The Politics of AIDS: Globalization, The State and Civil Society

The Politics of AIDS Globalization, the State and Civil Society

Edited by

Maj-Lis Follér and Håkan Thörn

The Politics of AIDS

Also by Håkan Thörn ANTI-APARTHEID AND THE EMERGENCE OF A GLOBAL CIVIL SOCIETY GLOBAL CIVIL SOCIETY: More or Less Democracy? (edited with Mikael Löfgren) HORIZONS: Perspectives on a Global Africa (edited with Elisabeth Abri)

Also by Maj-Lis Follér and Håkan Thörn NO NAME FEVER: Aids in the Age of Globalization (editors)

The Politics of AIDS Globalization, the State and Civil Society Edited by

Maj-Lis Follér Institute of Iberoamerican Studies, School of Global Studies, Göteborg University, Sweden

Håkan Thörn Department of Sociology, Göteborg University, Sweden

Editorial matter and selection © Maj-Lis Follér and Håkan Thörn 2008. Individual chapters © their respective authors 2008 All rights reserved. No reproduction, copy or transmission of this publication may be made without written permission. No paragraph of this publication may be reproduced, copied or transmitted save with written permission or in accordance with the provisions of the Copyright, Designs and Patents Act 1988, or under the terms of any licence permitting limited copying issued by the Copyright Licensing Agency, 90 Tottenham Court Road, London W1T 4LP. Any person who does any unauthorized act in relation to this publication may be liable to criminal prosecution and civil claims for damages. The authors have asserted their rights to be identified as the authors of this work in accordance with the Copyright, Designs and Patents Act 1988. First published 2008 by PALGRAVE MACMILLAN Houndmills, Basingstoke, Hampshire RG21 6XS and 175 Fifth Avenue, New York, N.Y. 10010 Companies and representatives throughout the world PALGRAVE MACMILLAN is the global academic imprint of the Palgrave Macmillan division of St. Martin’s Press, LLC and of Palgrave Macmillan Ltd. Macmillan® is a registered trademark in the United States, United Kingdom and other countries. Palgrave is a registered trademark in the European Union and other countries. ISBN-13: 978 0 230 55402 3 hardback hardback ISBN-10: 0 230 55402 4 This book is printed on paper suitable for recycling and made from fully managed and sustained forest sources. Logging, pulping and manufacturing processes are expected to conform to the environmental regulations of the country of origin. A catalogue record for this book is available from the British Library. A catalog record for this book is available from the Library of Congress. 10 9 8 7 6 5 4 3 2 1 17 16 15 14 13 12 11 10 09 08 Printed and bound in Great Britain by CPI Antony Rowe, Chippenham and Eastbourne

For our friend and colleague Gabriel Jagwe-Wadda † 14 September 2007 and all the others who have died from AIDS

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Contents Acknowledgements List of Tables, Figures and Illustrations About the Authors List of Abbreviations 1

ix x xi xv

Introduction: The Politics of AIDS Maj-Lis Follér and Håkan Thörn

Part 1

AIDS, Security and Global Governance

2

State Fragility, Human Security and HIV Dennis Altman

3

A Long Wave Event: HIV/AIDS, Politics, Governance and ‘Security’: Sundering the Intergenerational Bond? Tony Barnett

Part 2 AIDS and the African State in the Context of Globalization 4 5 6

7

8

AIDS and the Future of the African State Nana K. Poku The Unattended Dimension: AIDS and Governability in Africa Bertil Egerö and Mikael Hammarskjöld Multi-Sectoral Response to HIV/AIDS in the Context of Global Funding: Experiences from Uganda Edward K. Kirumira Governance Matters for AIDS: But what about the Politics? Lessons from South Africa and Uganda Peris Jones and Kjersti Koffeld Male Involvement in Uganda: Challenges and Opportunities Fred Henry Bateganya, Swizen Kyomuhendo, Gabriel Jagwe-Wadda and Chris Columbus Opesen

Part 3 9

Responses from Civil Society: Africa

Global Struggles, Local Contexts: Prospects for a Southern African AIDS Feminism Suzanne Leclerc-Madlala vii

1

15 17

27

47 49 71

87

97 123

139 141

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Contents

10

‘Brothers are Doing it For Themselves’: Remaking Masculinities in South Africa Steven Robins Gender, Sexuality and Global Linkages in the History of South African AIDS Activism, 1982–94 Mandisa Mbali Surviving Politics and the Politics of Surviving: Understanding Community Mobilization in South Africa May Chazan

11

12

Part 4 Responses from Civil Society: Latin America and Asia 13

14

15

From Global to Local and Back to Global: The Articulation of Politics, Knowledge and Assistance in Brazilian Responses to AIDS Cristiana Bastos Mechanisms of Representation and Coordination of the Brazilian AIDS Responses: A Perspective from Civil Society Veriano Terto Jr and Jonathan García AIDS and Civil Belonging: Disease Management and Political Change in Thailand and Laos Chris Lyttleton

156

177

199

223

225

242

255

Conclusion

275

16

277

Governing AIDS: Globalization, the State and Civil Society Håkan Thörn and Maj-Lis Follér

Index

297

Acknowledgements This book originates in The Politics of AIDS: Globalization and Civil Society, a conference held at the Museum of World Culture in Göteborg, Sweden on 18–19 May 2006. During the conference a number of distinguished scholars provided perspectives on the theme of the conference. We asked them to develop their thoughts further in written form and their contributions can be read in the anthology. For the book we also invited a few scholars who did not participate at the conference, but who have been kind in contributing their perspectives on the theme. We wish to thank all the authors. Bertil Egerö was of great support in the arrangement of the conference, contributing with his contacts in the field of social research on AIDS and with his valuable comments both during the conference and on parts of the manuscript. We also want to thank the members of the AIDS-network at Göteborg University and the other colleagues who took part in discussions that were extremely valuable to us, and who also functioned as discussants during the conference: Dick Durevall, Monica Lindberg Falk, Carolina Hjorth, Kristina Jönsson, Peter Magnusson, Ann Schlyter and Carin Olesen. The conference which made the book possible was generously funded by SIDA/SAREC, the Faculty of Social Science at Göteborg University and the Bank of Sweden Tercentary Foundation, who also contributed with funding for our editorial work. We hope that this book provides a contribution to a better understanding of the situation of the 33 million people living with HIV/AIDS and how it might be improved. Maj-Lis Follér and Håkan Thörn

ix

List of Tables, Figures and Illustrations Tables 3.1 4.1 6.1 6.2 8.1 12.1

Global summary of the HIV/AIDS epidemic, end 2005 Levels of HIV prevalence in selected populations, end 2005 Trends of HIV prevalence in Uganda since 1987 Foreign aid to civil society: stakeholders in Uganda by category Detailed statistical data on the uptake of VTC in PMTCT programme sites in Uganda Factors affecting whether and how people organize

31 55 89 90 125 206

Figures 3.1 3.2 3.3 4.1 4.2 4.3 4.4 4.5 6.1

HIV/AIDS: sundering the bonds of human society? The effect of HIV/AIDS on population in Rakai, Uganda, 1993 Projected population structure with and without the AIDS epidemic, Botswana 2020 Number of people living with HIV/AIDS, sub-Saharan Africa Population growth rates for selected Southern African countries Changes in life expectancy of selected African countries HIV prevalence among women and men aged 15–24, Zambia and Zimbabwe Dramatization of the impact of HIV/AIDS on political systems and processes HIV prevalence among ANC attendees in sentinel sites located in major towns from 1989 to 2005

36 37 38 55 58 58 59 62 88

Illustrations 10.1 10.2

‘Guilty’. Cartoon by Zapiro ‘Zuma’s reputation’. Cartoon by Zapiro

x

161 164

About the authors Dennis Altman is Professor of Politics at LaTrobe University, Australia. He was President of AIDS Society Asia and the Pacific (2001–5) and is currently a member of the Governing Council International AIDS Society. He is the author of 12 books, most recently Gore Vidal’s America (2005) and Global Sex (2001). Tony Barnett is Economic and Social Research Council Professorial Research Fellow at the London School of Economics. His two best known books about HIV are AIDS in Africa: its Present and Future Impact (1992) written with Piers Blaikie, and AIDS in the 21st Century: Disease and Globalization, (2002, revised, expanded and updated 2006), with Alan Whiteside. Cristiana Bastos, Ph.D., is an anthropologist and a researcher at the Institute of Social Sciences, University of Lisbon and is currently visiting faculty at Brown University. She has previously worked on the impact of the AIDS pandemic, with fieldwork in Brazil (Global Responses to AIDS: Science in Emergency 1999). She is currently working on aspects of Portuguese nineteenthand twentieth-century colonialism in Asia and Africa. She has published a number of articles and book chapters on the topic and is currently preparing a monograph. Fred Henry Bateganya is Assistant Lecturer and doctoral student at the Faculty of Social Sciences, Makerere University. He has previously worked on a number of HIV/AIDS-related research projects and assignments. He was the social scientist of the Technical Working Group (TWG) of the Uganda National HIV/AIDS Sero Behavioral Survey (UNHSBS: 2004/05). Currently, he is the lead social scientist on a WHO/TDR-funded study on a situation analysis of different ART programmes in Uganda. His doctoral project is titled ‘Construction of Illness and its Implications for Adherence to Medication (a case study of Antiretroviral Therapy in Uganda)’. May Chazan is a research associate with the Health Economics and HIV/AIDS Research Division (HEARD) at the University of KwaZulu-Natal in Durban, South Africa and a doctoral candidate at Carleton University in Ottawa, Canada. She has published several articles on HIV/AIDS in an urban context and her current work involves critically examining social mobilization around HIV and AIDS in South African communities. Bertil Egerö, sociologist, demographer and Associate Professor (emeritus) at Lund University, has worked with development issues since the 1960s, xi

xii

About the authors

specializing in population/development relations. His major concern with the AIDS epidemic relates to the extreme loss to death of people in their prime ages, lasting over decades and with profound impacts on the functioning of society at all levels. He has published several articles on this topic. Maj-Lis Follér has a Ph.D. in human ecology, and is Associate Professor in Latin American studies with a human ecological perspective. She is at present director at the Institute of Iberoamerican Studies at School of Global Studies, Göteborg University, Sweden. She is currently working on AIDS-related research in Brazil. Follér has published several articles on this topic and co-edited the anthology No Name Fever: AIDS in the Age of Globalization (2005, with Håkan Thörn). Jonathan Garcia, M.Phil., is based at the Center for Gender Sexuality and Health, Columbia University, New York, and works with the Brazilian Interdisciplinary AIDS Association (ABIA), in Rio de Janeiro. Research interests include social movements, political participation, religious institutions and health, HIV/AIDS, sexual rights, and access to health. He has published several articles and chapters on these topics. Mikael Hammarskjöld is a human geographer with more than 15 years’ experience of working with socio-economic issues in developing countries, principally as adviser or consultant to the Swedish International Development Agency (SIDA). He has considerable experience from multidisciplinary research on agricultural and rural development in Sub-Saharan Africa and from long-term field work in Venezuela; and is a specialist in HIV/AIDS and population-related issues, including the relationship between population and environment and the socio-economic consequences of HIV/AIDS. Gabriel Jagwe-Wadda died on 14 September 2007. He was a lecturer and a doctoral student at the Faculty of Social Sciences, Makerere University. He wrote mainly on fertility behaviour and reproductive health issues. His research interests included: family stress and adaptation, HIV/AIDS, and reproductive health. His doctoral research was titled ‘Family Adaptation to Prolonged Adversity in Uganda: A Study of Rural Families affected by HIV/AIDS Prime-age Mortality’. Peris Jones, Ph.D., is a Senior Research Fellow at the Norwegian Centre for Human Rights and is currently a visiting researcher at the Centre for the Study of AIDS, University of Pretoria. His research interests include the intersection between human rights, governance and service delivery. He recently completed a research project on access to anti-retroviral medication in a marginalized community in South Africa. Publications include the book

About the authors

xiii

Democratising Development: The Politics of Socio-Economic Rights in South Africa (2005, co-edited with Kristian Stokke) and several journal articles. Edward K. Kirumira is a Professor of Sociology at Makerere University, where he has taught since 1987. He specializes in population and international health with particular interest in reproductive health, HIV/ AIDS and broader emergent diseases research. He has authored papers in these areas and provided technical assistance to national and international programmes as well as being a technical adviser for several international agencies. He is a Fellow and Executive Council member of the Uganda National Academy of Sciences and is currently Dean of the Faculty of Social Sciences at Makerere University. Kjersti Koffeld works at the Norwegian Youth Council as an international officer, being responsible for exchange programmes between Norwegian children and youth organizations and similar organizations in the Global South. She holds a Master’s degree in Comparative Politics from the University of Bergen. As part of her Master’s research she was awarded a scholarship from the South Africa Programme at the Norwegian Centre for Human Rights. Swizen Kyomuhendo is a lecturer and a doctoral student at the Faculty of Social Sciences, Makerere University. Suzanne Leclerc-Madlala is a medical anthropologist and Professor in the School of Anthropology, Gender and Historical Studies at the University of KwaZulu-Natal. She has done extensive research on gender and sexuality in Southern Africa and has published in international journals on virginity testing, sexual cleansing practices, transactional sex and changing gender relations of the post-apartheid era. She currently serves as an adviser to UNAIDS and is the author of African Sexual Cultures for Blackwell’s Encyclopedia 2006. Chris Lyttleton is Associate Professor of Anthropology, Macquarie University, Sydney, Australia. His primary research focuses on the social impact of HIV/AIDS in Thailand and Laos; changing patterns of drug abuse in mainland SE Asia; and mobility, social change and cross-border disease vulnerability in the Upper Mekong. He has published widely on these topics including the monograph Watermelons, Bars and Trucks: Dangerous Intersections in Northwest Laos (2004) and the book Endangered Relations: Negotiating Sex and AIDS in Thailand (2000). Mandisa Mbali is a South African Rhodes Scholar and doctoral candidate based at the Welcome Unit for the History of Medicine at Oxford University.

xiv

About the authors

Her doctoral thesis is entitled ‘A history of AIDS activism in South Africa 1982–1994’. She has published several articles and chapters on this topic. Chris Columbus Opesen is a Teaching Assistant at the Faculty of Social Sciences, Makerere University. Nana K. Poku is John Ferguson Professor of African Studies at Bradford University. He joined the university’s Peace Studies Department in 2006 from the United Nations where he held the posts of Senior Policy Adviser to the Executive Secretary of the Economic Commission for Africa (ECA) and also Director of Research for the Secretary General’s Commission on HIV/AIDS and Governance in Africa (UN–CHGA). His current research focus is on health, poverty and migration. He has published and co-edited a number of books on these topics, including AIDS in Africa: How the poor are dying (2005) and The Political Economy of HIV/AIDS in Africa (2004, ed. with Alan Whiteside). Steven Robins, Ph.D. is an Associate Professor in the Department of Sociology and Social Anthropology at the University of Stellenbosch, South Africa. His recent research is on globally connected NGOs and CBOs involved in AIDS and housing activism (forthcoming). He has edited a book entitled Limits to Liberation After Apartheid: Citizenship, Governance and Culture (2005). Veriano Terto Jr. has an MS in Psychology and a Ph.D. in Collective Health. He is currently the Executive Director of the Brazilian Interdisciplinary AIDS Association (ABIA) in Rio de Janeiro. Among his main interests in the field of AIDS research are AIDS and homosexuality, seropositivity as a social category, the history of the Brazilian AIDS movement and access to AIDS treatments in Brazil and in the world. He has published a number of articles both in Brazil and abroad on issues concerning the impact of AIDS on Brazilian homosexual population, seropositivity as a social identity and access to AIDS treatment in Brazil. Håkan Thörn is Professor at the Department of Sociology, Göteborg University, Sweden. He was the co-curator of an exhibition on HIV/AIDS and globalization, produced by the Museum of World Culture, Göteborg, and is currently involved in a research project on the impact of international aid in South African civil society. Recent publications include Anti-Apartheid and the Emergence of a Global Civil Society (2006), and No Name Fever: AIDS in the Age of Globalization (2005, co-edited with Maj-Lis Follér).

List of Abbreviations ABC ABIA ACCESS

Abstinence, Being faithful in marriage, and Condoms Brazilian Interdisciplinary AIDS Association (Brazil) Alliance of Complementary Currencies Enabling Sustainable Society ACP AIDS Control Programme (Uganda) ACT UP AIDS Coalition To Unleash Power (US) AIC AIDS Information Center (Uganda) AIDS Acquired Immune Deficiency Syndrome AIM AIDS/HIV Integrated Model (Uganda) ANC Anti-Natal Care (Uganda) ANC African National Congress (South Africa) APN+ Asian Positive Peoples Network ART Anti-retroviral Therapy (or Treatment) ARV Anti-retrovirals ASEAN Association of South East Asian Nations AZT Azidothymidine BCC Behaviour, Change, Communication (strategy within PEPFAR) BJP Bharatiya Janata Party (Indian People’s Party) CBO Community Based Organization CCM Country Coordination Mechanism (Uganda) CDC Centres for Disease Control (US) CHAI Community-Lead HIV/AIDS Initiatives (Uganda) CHGA Commission on HIV/AIDS and Governance in Africa CIA Central Intelligence Agency (US) COSATU Congress of South African Trade Unions CRTA Centre of Reference and Training for AIDS (S. Paulo, Brazil) CSO Civil Society Organization CSW Commercial Sex Worker DACC District AIDS Coordination Committee (Uganda) DANIDA Danish International Development Agency DFID Department for International Development (UK) DHAC District HIV/AIDS Committee (Uganda) DHS Demographic and Health Surveys DNA Deoxyribonuclei acid DRC Democratic Republic of Congo ENONG National Meetings of NGOs (Brazil) ERONG Regional Meetings of NGOs (Brazil) FBO Faith Based Organization FDA Food and Drug Administration (in USA) xv

xvi

List of Abbreviations

FEDTRAW FSAW FTA GAP

Federation of Transvaal Women Federation of South African Women Free Trade Agreement Governance and AIDS Programme (at IDASA, South Africa) GAPA Support and Prevention Group for AIDS (Brazil) GASA Gay Association of South Africa GDP Gross Domestic Product GFATM Global Fund to fight AIDS, Tuberculosis and Malaria GIPA Greater Involvement of People Living with HIV/AIDS GLIA Great Lakes Initiative on AIDS GLOW Gay and Lesbian Organization of the Witwatersrand (South Africa) GPA Global Programme on AIDS HBMF Home Based Management of Malaria/Fever (Uganda) HDI Human Development Index (UNDP) HIV Human Immunodeficiency Virus ICAAP International Congress on AIDS in Asia and the Pacific IBASE Brazilian Institute for Socio-Economic Analyses IDASA The Institute for Democracy in South Africa IDU Intravenous Drug User IEC Independent Electoral Commission (South Africa) IEC Information Education and Communication (Uganda) ILGA International Lesbian and Gay Association ILO International Labour Organization IMC Inter-Ministerial Committee (Uganda) IMF International Monetary Fund INC Intra-Natal Care (Uganda) INGO International Non Governmental Organization ISER Institute for Religious Studies (Brazil) LNP+ Lao Network of People Living with HIV/AIDS LUSEA Lao Union of Science and Engineering Associations MACA Multi-sectoral Approach to Control of AIDS (Uganda) MAP Multi-Country HIV/AIDS Programme (World Bank) MoFRED Ministry of Finance, Planning and Economic Development (Uganda) MoH Ministry of Health MOPH Ministry of Public Health (Thailand) MTCT Mother to Child Transmission of HIV MSF Médecins Sans Frontières MSM Men who have Sex with Men NACOSA National AIDS Convention of South Africa NACWOLA National Community of Women Living with HIV/AIDS (Uganda)

List of Abbreviations

NAPHA

xvii

National Access to Antiretroviral Program for PLHA (Thailand) NAPWA National Association of People Living with HIV/AIDS (South Africa) NCC National Coordination Committee (Uganda) NEPAD New Partnership for Africa’s Development NGCLE National Coalition for Gay and Lesbian Equality (South Africa) NGO Non-Governmental Organization NORAD Norwegian Agency for Development Cooperation NOW Natal Organization of Women (South Africa) NPA Non-Profit Association NRM National Resistance Movement (Uganda) NSF National Strategic Framework for HIV/AIDS (Uganda) OLGA Organization of Lesbian and Gay Activists (South Africa) PAC Provincial AIDS Councils (South Africa) Pela VIDDA Value, Integration, and Dignity for the AIDS Patient (Brazil) PEPFAR US President’s Emergency Plan for AIDS Relief PHA People with HIV network PLI Philly Lutaaya Initiative PLWHA People Living With HIV/AIDS (or PLHA) PMTCT Preventing Mother To Child Transmission of HIV PNC Post-Natal Care (Uganda) PPTCT+ Prevention of Parent to Child Transmission of HIV/AIDS/STDs and extending the lives of mothers PWA People With AIDS RGO Rand Gay Organization (South Africa) RNA Ribonucleic acid RNP+ National Network for People Living with HIV/AIDS (Brazil) SADC Southern African Development Community SANAC South African National AIDS Council SSA Sub-Saharan Africa STD Sexual Transmitted Disease STI Sexual Transmitted Infection SUS Unified Health System (Brazil) TAC Treatment Action Campaign (South Africa) TAP Township AIDS project (South Africa) TASO The AIDS Support Organization (Uganda) TB Tuberculosis TGWU Transport and General Workers’ Union (South Africa) TNP+ Thai People Living with HIV/AIDS TRIPS Trade-Related Aspects of Intellectual Property Rights UAC Uganda AIDS Commission

xviii

List of Abbreviations

UACP UCS UDF UNAIDS UNDP UNESCO UNFPA UNGASS UNICEF USAID UWO VCT WB WHO WNC WTO

Uganda AIDS Control Programme Universal Coverage Scheme (Thailand) United Democratic Front (South Africa) The Joint United Nations Programme on HIV/AIDS United Nations Development Programme United Nations Education and Cultural Organization United Nations Population Fund United Nations General Assembly Special Session United Nations Children’s Fund US Agency for International Development United Women’s Organization (South Africa) Voluntary Counselling and Testing (Uganda) World Bank World Health Organization Women’s National Coalition (South Africa) World Trade Organization

1 Introduction: The Politics of AIDS Maj-Lis Follér and Håkan Thörn

Introduction HIV/AIDS is one of the major political challenges of our time. For more than two decades various initiatives have been taken to respond to the disease, not just by governments, but also by research communities, transnational corporations and in the context of civil society. After the first phase of the spread of the disease, when it was mainly associated with homosexuality, and gay movements were the main non-state actors, the patterns of contagion, as well as the field of actors, have broadened. However, the politics of HIV/AIDS has also become increasingly transnational, as nation states in the Global North have extended their programmes across borders and transnational networks composed of international bodies, NGOs, social movements and private foundations have increased their activity steadily. The political implications of the policies of transnational pharmaceutical companies and their pricing of medicines have also been an issue high on the political AIDS agenda all over the world. Consequently, AIDS politics, whether, local, national, transnational or global, must be approached as part of contemporary globalization, and thus is embedded in the power structures of contemporary world society. As a phenomenon that was first ‘discovered’ and medically and socially defined in the 1980s, HIV/AIDS coincides with the latest phase of economic, cultural and political globalization – and the disease, its spread and the various reactions to it, are intrinsically linked with the emergence of an increasingly integrated, and highly socially stratified world society (Barnett and Whiteside 2006; Altman 2001; Poku 2005; Follér and Thörn eds. 2005). The broadening of the HIV/AIDS issue during the last decade also coincides with a wave of increased activity in national civil societies in different parts of the world, as well as in an emerging global civil society and its increasing media visibility in connection with protests against WTO and G8 meetings and at the World Social Forum where hundreds of thousands of activists 1

2 The Politics of AIDS

have gathered in cities in the Global South (Porto Alegre, Mumbai, Caracas, Bamako, Nairobi). The social sciences have responded to these processes with a growing body of literature, developing theories and research on globalization, democracy and civil society. An important issue regards the meaning of the processes of democratization, as well as the status of the nation state as a political space, after the end of the Cold War. The fact that more countries than ever have adopted parliamentary democracy has been celebrated by many, while others have argued that this development not necessarily represents increased democratization as it happens in a world in which the power of the democratic institutions of the nation state has been seriously undermined by the process of neo-liberal economic globalization. Further, it has been argued that the increasing number, and various activities of the many types of organizations, including NGOs, INGOs and private foundations, that are the reference points for the claims of increased activity in civil society, can not per definition be assumed to contribute to democratization. We argue that these are issues open to theoretical debate and empirical investigation and that they are indeed crucial issues for thinking and research on the politics of AIDS. In May 2006 we invited a number of social scientists highly experienced in theorizing and researching HIV/AIDS to an inter-disciplinary conference in Göteborg, Sweden, titled The Politics of AIDS: Globalization and Civil Society. In addition to the scholars that were invited, activists, policy makers, teachers, journalists and social workers involved in AIDS work participated in the conference, and there was an open and creative discussion on how to understand and analyse current developments regarding the politics of AIDS, particularly the interaction between different political levels – local, national, global – and types of actors, supra-national organizations (the World Bank, IMF, G8, UN, etc.), corporations, CBOs, NGOs, INGOs, private foundations, governments and donor agencies. There was also a common agreement about the need for an increased input from the social sciences in the context of knowledge production related to HIV/AIDS. This encouraged us to ask the speakers, as well as a few scholars who did not participate in the conference, to make contributions to a volume on the politics of AIDS. This book links up with the multi-dimensional approach to globalization, emphasizing the interplay between economic, political and cultural processes (Scholte 2005; Beck 1999; Held et al. 1999; Thörn 2006; Follér and Thörn 2005). Contrary to the assumption made by many scholars in the field, we argue that it could not be assumed that globalization per definition means decreasing political importance of the nation state. Thus, our focus on globalization and civil society during the conference did not mean that questions regarding the role of national politics were ignored. On the contrary, the actual AIDS policies in different parts of the world show that globalization means different things in different national contexts. Thus, any analysis of globalization must in one way or another be anchored in different national

Maj-Lis Follér and Håkan Thörn

3

contexts, and comparative approaches are necessary for an understanding of the actual relations between the changes of national civil societies and the rise of a new global political space.

The politics of AIDS: themes, questions and structure In this Introductory chapter we will provide a brief overview of the chapters and the main themes and arguments of the book, highlighting the common threads of the different chapters and sections. Those who are specifically interested in a more general and conceptual discussion of the politics of AIDS may then proceed directly to the concluding chapter, in which, drawing on the most important empirical findings and the theoretical perspectives of the different chapters, we attempt both to clarify and develop the conceptual framework that the book departed from. As its title suggests, the over-arching theme of the book is to analyse the political responses to the AIDS epidemic. This theme is then divided into four interacting levels of politics, reflected in the different parts of the book: the global level, the macro-regional level (focusing on Africa), the national level (and its interaction with the global level) and civil society (and its interaction with the state and with globalization). The main theme and its subdivisions are also reflected in the questions which initially were put to the contributors: What are the major current issues regarding the politics of AIDS – seen in a global perspective? What is the significance of the macro-regional level (such as Africa) of political action? What is the role of the nation state in the increasingly complex multi-level political game of current global AIDS politics? What is the capacity of political institutions in dealing with the disease on a national level? What is role of democratic processes for an adequate political response to the disease and, conversely, how does HIV/AIDS impact on democracy? How is local, civil society based HIV/AIDS work in different parts of the world linked to, and affected by, the actions of INGOs, public foundations and corporations – and more generally by the process of globalization? These are indeed broad questions that, in order to be dealt with in a fully satisfying way, need more of substantial, globally oriented, comparative and interdisciplinary research than is at hand today. Listening to voices raised at various international conferences, we believe that there is a widespread and immediate demand for solid social science research that addresses them. In order to make a contribution to a research process that began with Tony Barnett and Alan Whiteside’s comprehensive, analytically innovative and empirically well-researched global overview of the AIDS problematic, Disease and Globalization: AIDS in the Twenty-First Century (see References), we chose to call for a number of case studies that may shed some further light on the burning issues concerning the politics of AIDS. We have structured the book and its sections according to the thematic focus of the contributions: while Dennis Altman’s and Tony Barnett’s

4 The Politics of AIDS

contributions (Chapters 2 and 3) look at current developments on a global level, the other contributions in this book focus on countries in the Global South, and particularly on the region of sub-Saharan Africa; the conditions for AIDS politics on the general level of the African macro-region is dealt with in the contributions by Nana K. Poku, and Bertil Egerö and Mikael Hammarskjöld (Chapters 4 and 5). Edward Kirumira (Chapter 6), Peris Jones and Kjersti Koffeld (Chapter 7) and Fred Bateganya, Swizen Kyomuhendo, Gabriel JagweWadda and Columbus Opesen (Chapter 8) all focus on different aspects of what has been labelled the ‘success story’ of AIDS politics in Uganda (Chapter 7 making a systematic comparison between Uganda and South Africa). Finally Suzanne Leclerc-Madlala, Steven Robins, Mandisa Mbali, May Chazan, Chris Lyttleton, Cristiana Bastos and Veriano Terto and Jonathan García, (Chapters 9–15) all focus on the politics of AIDS in the context of civil society. It is of course not a coincidence that this book first and foremost deals with countries in the Global South, and particularly with the region of subSaharan Africa. Approximately 33 million people are infected with HIV, and 90 per cent of them are living in poor countries in the South.1 Sub-Saharan Africa stands out: approximately 68 per cent of the infected live in this part of the world (UNAIDS 2007). The political responses to HIV/AIDS have varied in different parts of sub-Saharan Africa; and have had varied success; while Uganda is often cited as a success story, South Africa is generally reported as a great failure. There is however much more to say about these particular cases, which are given attention in several contributions in this book. Another case often reported as a success story is Brazil, and Cristiana Bastos’ and Veriano Terto Jr and Jonathan García’s chapters provide some reflections on how and why the Brazilian AIDS policy happened, and what there is to learn from it. Asia is now given increasing attention as reports state that the epidemic is steadily worsening in this part of the world – but there is so far relatively little research on its political and social aspects. In this volume Chris Lyttleton’s contribution compares the emerging AIDS politics in Thailand and Laos. In addition to political categories such as the state and civil society, several contributions specifically focus on the role of sociological categories such as class, gender, sexuality and race and how these intersect, sometimes constraining, sometimes facilitating political action on AIDS issues. While Suzanne Leclerc-Madlala and Mandisa Mbali look at intersections of race, sexuality and gender in South African civil society, the contributions by Steve Robins and Fred Bateganya, Swizen Kyomuhendo, Gabriel Jagwe-Wadda and Chris Columbus Opesen look at male involvement in AIDS, a theme that has previously been under-researched.

The contributions in the book Part 1 (AIDS, Security and Global Governance) includes two chapters. In Chapter 2 (State Fragility, Human Security and HIV) Dennis Altman departs

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from the assumption that the way that HIV/AIDS is conceptualized is of immediate consequence for the political responses to the disease. He points to contesting definitions emerging in opposition to each other in different institutional settings and with different political implications. The early ‘medical’ definition of AIDS as a narrow health issue was contested by the UNDP’s re-definition of the disease as a development issue. When the US government later reframed AIDS as a security issue, it was both an attempt to place it higher on the political agenda and to integrate the issue into an analysis of possible threats to global stability. The concept of ‘human security’ was then launched by the UNDP, once again emphasizing links to development and to the protection of individuals and communities rather than state boundaries. The chapter examines both the advantages and the problems in linking HIV/AIDS to a security discourse, with a particular focus on implications for democracy and civil society. In, Chapter 3 (A Long Wave Event: HIV/AIDS, Politics, Governance and ‘Security’: Sundering the Intergenerational Bond?) Tony Barnett approaches the links between HIV/AIDS and security from a slightly different angle. He departs from a broad meta-perspective, arguing that there is a disharmonious resonance between the life cycle of the Human Immunodeficiency Virus – HIV – and that of its human host. In severely affected countries, many people live long enough to reproduce and then die, leaving behind numerous orphans. According to Barnett this process has consequences that we do not yet fully understand. As a case in point – with relevance to the issue concerning the long-term effect of AIDS on democracy – he discusses the consequences of premature death for electoral processes in Southern Africa. Barnett further reviews the debate on the political and governance implications of the AIDS epidemic, with a particular focus on the attempts to link AIDS to a security discourse. He argues that ‘security analyses’ that predict social disorder arising from legions of poorly socialized and unruly children grown to adulthood lack clear evidence. Altman and Barnett both argue that it is not unproblematic to define AIDS in terms of a security issue. Altman mentions the risks of authoritarian responses as a consequence of securitization of the AIDS issue, and points to the example of the US ‘war on drugs’, which has legitimized military intervention in Latin America. Barnett points to the US-led ‘war on terror’, in which the concept of security is crucial, and which has led to violations of human rights in the name of the defence of democracy. As an example of this connection Barnett mentions that political analysts have argued that the estimated 14 million AIDS orphans are a likely source not just of ‘social unrest’ but also for terrorist recruitment. Altman on the other hand argues that the war on terror actually has meant a decline in interest in defining AIDS as a security issue. Part 2 (AIDS and the African State in the Context of Globalization) contains five chapters on the AIDS epidemic in the context of the macro-region

6 The Politics of AIDS

of Sub-Saharan Africa – and the role of the nation state in this context – with a particular focus on the cases of Uganda and South Africa. The conditions for AIDS politics on the general level of the African macro-region is analysed in the contributions of Nana K. Poku, and Bertil Egerö and Mikael Hammarskjöld. Edward Kirumira and Fred Bateganya, Swizen Kyomuhendo, Gabriel Jagwe-Wadda and Columbus Opesen look at the interaction between the state and civil society in the case of Uganda; and the different cases of state governance in Uganda and South Africa are compared in the contribution of Peris Jones and Kjersti Koffeld. In Chapter 4 (AIDS and the Future of the African State) Nana K. Poku argues that there are significant gaps of knowledge about the impact of HIV/AIDS for state consolidation on the African continent, where approximately 15 million people are currently HIV infected. He argues that colonial history, as well as post-colonial political culture, has created notoriously weak states with high levels of corruption. AIDS is making the situation even worse. With data from institutions such as the World Bank and UNAIDS he points to the high mortality of the HIV/AIDS epidemic in Africa, and its devastating effect on African societies. In a circular way mortality weakens state institutions, rendering the government increasingly ineffective in stopping the very agent that is weakening it. Poku’s message is that the epidemic relentlessly reduces state capacity, creating in increasingly ‘hollow states’ on the African continent. The analysis of the general impact of HIV/AIDS on states in Africa is continued in Chapter 5 (The Unattended Dimension: AIDS and Governability in Africa) in which Bertil Egerö and Mikael Hammarskjöld focus on the implications of the disease for the public services and their capacity to deliver as required. The authors are sceptical to the value of the concept of ‘governance’ in development studies, arguing that it seems more fit to suit the priorities of World Bank policies than genuine analytical purposes. For the purpose of their own analysis, they instead introduce the concept of ‘governability’ to cover ‘the administrative and financial capacity of a state apparatus to keep the complex web of regulated interactions and exchanges that characterize a nation; the decision-making, follow-up and controls, the relations to a private sector of the economy, the interaction with and services to civil society’ (pp. 72–3). Along the same lines as Poku, they highlight the fact that while the public sector has to engage in new and highly demanding tasks linked to the spread of HIV/AIDS, the epidemic itself continually weakens the capacity of the public sector to deliver. For instance, the introduction of Anti-Retroviral Drugs (ART), which infected people need to take throughout their lives, creates a need for an extension of health services in already poor countries with weak public sectors. A serious yet little recognized aspect stressed in the article is the loss of institutional memory when, unavoidably, old and knowledgeable people are replaced by less experienced staff. Further, in addition to the financial costs linked to loss of

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staff, staff replacement is in itself a demanding process. Regarding this situation Egerö and Hammarskjöld argue that international aid is necessary, but that the approaches currently favoured by donors are insufficient and even misdirected. They conclude that radical new thinking is required in international action on AIDS, supported by a broader research agenda that builds on at least three different research orientations: (1) civil society and social mobilization; (2) globalization (a wide spectrum of dimensions) and domestic development; and (3) the state in between civil society, market and the international context. The effects of international aid on state politics in Africa are further investigated in Chapter 6 (Multi-Sectoral Response to HIV/AIDS in the Context of Global Funding: Experiences from Uganda) by Edward Kirumira. Departing from the first AIDS case identified in Uganda in 1982, he gives an overview of the country’s AIDS policies until today, paying particular attention to the role of international aid. Edward Kirumira highlights five aspects of these interventions: 1) an open policy towards the AIDS pandemic; 2) co-operation with international and bilateral donor agencies; 3) emphasis on a multi-level policy intervention, involving national, district, institutional and community levels – in the context of civil society post-test clubs, community and religious organizations were actively involved; 4) a multisectoral approach that was carried out both in terms of programming and co-ordination, and built on a definition of HIV/AIDS that went beyond a narrow health perspective and instead approached it in broader terms as a social, political and cultural issue; and 5) on an individual level a successful encouragement of open declarations of HIV status. With the help of data from the Ugandan Ministry of Health, the Uganda AIDS Commission, UNAIDS and other sources he then highlights the problems that exist for the government when coordinating and integrating the national programme with the mechanisms of international funding. The author indicates that it is extremely difficult to manage the epidemic on a national level as long as there is a substantial economic dependence on development partners. In Chapter 7 (Governance Matters for AIDS: But what about the Politics? Lessons from South Africa and Uganda) Peris Jones and Kjersti Koffeld compare Uganda’s approach with that of the government in South Africa. As a point of departure for their comparison of what constitutes ‘good governance’ in the national contexts of South Africa and Uganda, they use a number of indicators, developed by the Governance and AIDS Programme (GAP) at the Institute for Democracy in South Africa (IDASA): participation, accountability, efficient and fair institutions, rule of law, gender-sensitivity, openness, transparency and responsiveness. Jones and Koffeld argue that the most important difference between Uganda and South Africa is related to leadership and relations between the government and civil society. While the government in Uganda is engaged in a serious dialogue with civil society

8 The Politics of AIDS

actors, and has included representatives in their policy structures, the South African government has generally taken a hostile attitude to civil society. This conclusion is in line with the governance theory that these authors’ use – that efficient policy intervention demands an inclusive approach by governments in relation to civil society. Another important difference between the governments of the two countries is the lack of an open attitude to the HIV/AIDS pandemic, which was the first decisive step in Uganda’s policy, and which has been largely absent in the case of South Africa. The authors also point to the obvious differences between the leadership of President Yoweri Museveni, who ‘has been able to have a deep personal and dramatic impact upon responses to HIV/AIDS’ (p. 17); and President Thabo Mbeki, whose AIDS-denialism is known world-wide. Although many aspects of the Ugandan case have been thoroughly researched, the important issue of male involvement has been neglected. Hence, Chapter 8 (Male Involvement in Uganda: Challenges and Opportunities) by Fred Bateganya, Swizen Kyomuhendo, Gabriel Jagwe-Wadda and Columbus Opesen, is a unique study that gives further insight into Ugandan AIDS politics. In their analysis of the low male involvement in Mother to Child Transmission of HIV/AIDS services (PMTCT) in Uganda, the authors employed a qualitative methodology involving in-depth interviews with parents, health providers and community members. Findings revealed that the Information, Education and Communication strategy (IEC) is inadequate and that there is low community support. Existing social inequalities, and the dominance of certain norms and values in Ugandan civil society, are intervening. According to the authors, the reasons for men’s reluctance to participate in the programme are stereotyped gender roles in combination with the stigma associated with the disease. They also emphasize that the involvement of men depends on the status and the socio-economic condition of their family. The authors also find that the programme’s communication to men is poor and that it has failed to include male community leadership. They conclude that, taken as a whole, the PMTCT programme and the criteria of service provision are ‘female centred and marginalizes male involvement’ (p. 135). While all of the chapters in Part 2 focus on the role of the state in AIDS politics, and emphasize the importance of interaction civil society as well as of the influence of globalization, Parts 3 and Part 4 turn the table around. Here civil society is the main focus, while the state is a counterpart and globalization is a context that sometimes facilitates, sometimes constrains, interaction with civil society. Part 3 (Responses from Civil Society: Africa) is a continuation of Part 2 also in the sense that it consists of four chapters that focus on Sub-Saharan Africa, more specifically South Africa. Further, a common theme of the four chapters is that they deepen our understanding of how inequalities and oppression – based on gender, class and race – both structure the social pattern of the

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epidemic and are important points of departure for AIDS movements in civil society. Three of the chapters (9–11) also make references to the trial against former Deputy-President Jacob Zuma, who in 2006 was taken to Johannesburg High Court on charges of rape, an event with high symbolic significance for the politics of AIDS in a South African context. The accuser was the daughter of a friend of Zuma’s who was infected with HIV. Zuma admitted that he had had sex with her, and that he knew that she was infected, explaining in relation to this that he had taken a shower afterwards. According to some of his critics, this statement was a hard strike against whatever progress had been made by years of public education on AIDS prevention in Southern Africa. In Chapter 9 (Global Struggles, Local Contexts: Prospects for a Southern African AIDS Feminism) Suzanne Leclerc-Madlala emphasizes that any adequate politics of AIDS need to accelerate the global struggle against patriarchy – the existing gender inequalities and its system of endorsing male privilege. She explains the situation in today’s Southern Africa, where young women are three to six times more likely to be HIV infected than young men of the same age. Among older women marriage appears to be a primary risk factor for infection; 60–80 per cent of HIV-positive tested women reported that they had had sexual relations only with their husbands. Leclerc-Madlala argues that in spite of this, the intersections of gender and HIV/AIDS, of power and sexuality, have not been adequately taken into account in Southern Africa’s response to AIDS. She analyses how and why these issues have been avoided in South Africa, and argues that the failure to address current socio-cultural norms of gender inequality, sexual violence and HIV/AIDS vulnerability is a crucial factor in order to understand the lack of adequate HIV prevention in the country. She uses the Zuma trial as a case in point. However, while the women outside of the court aggressively supporting Zuma ‘revealed the degree to which women had internalized their own oppression’ (p. 15), the protests of other groups of women also showed that the case provided a trigger for a feminist AIDS activism. In Chapter 10 (‘Brothers are Doing It For Themselves’: Remaking Masculinities in South Africa) Steven Robins characterizes the Zuma trial as the staging of a national drama about sex, gender, morality and political leadership in South Africa. In explaining how and why the trial could become such highly contested public battleground, Robins argues that it is a mistake to interpret it simply in terms of a leadership succession struggle within the ANC. Rather, the case, and particularly the debate around it, must be seen in the context of a process of politicization of sexuality and masculinity in response to HIV/AIDS in South Africa. In this process various actors have been struggling to define the appropriate responses to HIV/AIDS, debating AIDS treatment and the official prevention strategies of ABC (Abstain from sex before marriage, Be faithful and Condomize). Further, Robins emphasizes that Zuma’s claim that he simply had been acting in accordance with

10 The Politics of AIDS

norms related to Zulu ‘traditional masculinity’ – and the debate that this provoked – is an example of how ideas about masculinity in South Africa involve a tension between universalistic sexual rights and particularistic sexual cultures. Robins also provides an example of an attempt in South African civil society to challenge hegemonic masculinities ‘from below’. He looks at the case of Khululeka, a group of young men who seek to construct ‘alternative masculinities’ in a township-based support group for men living with AIDS in Cape Town. The group is an offshoot of Treatment Action Campaign (TAC), that challenges the latter’s rights-based AIDS activism and emphasis on women through a ‘cultural approach’ that oppose dominant male sexual cultures. In Chapter 11 (Gender, Sexuality and Global Linkages in the History of South African AIDS Activism 1982–1994) Mandisa Mbali argues that the Zuma case raised the important question about sexual coercion within political circles in South Africa, and also point to difficulties that feminists face when they address the link between gender-based violence and AIDS. Along these lines Mbali’s chapter is a study of how the politics of gender and sexuality in the context of the anti-apartheid movement has shaped contemporary South African AIDS activism. On the basis of archival research conducted at the Gay and Lesbian Archive and at the Women’s Health Project, as well as interviews with AIDS activists and feminist magazines, she compares and contrasts early political responses to AIDS by feminists and gay rights activists and discusses the impact of this legacy on the Treatment Action Campaign (TAC), the leading social movement organization in the context of contemporary South Africa AIDS activism. TAC is also a well-known actor in the context of global civil society and the chapter highlights how it has been shaped by pre-existing global activist linkages. Mbali argues that gay rights activists’ early involvement in AIDS activism partially explains their prominence in today’s TAC. By contrast many feminist activists paid the issue inadequate attention during the same period, because they viewed AIDS as mainly being a threat to ‘high risk’ women. Against this background, and also because the South African women’s movement has been, and still is, fragmented, feminists are experiencing difficulties in establishing a strong and autonomous voice within the AIDS movement. While there has been substantial scholarly interest in TAC, little attention has been paid to other forms of social mobilization against AIDS in Southern Africa. In Chapter 12 (Surviving Politics and the Politics of Surviving: Understanding Community Mobilization in South Africa) May Chazan makes an important and unique contribution to our understanding of communitybased activism in South Africa. Empirically, it is based on interviews with members of community-based initiatives and/or focus groups with umbrella NGOs and key academics. Chazan argues that research on community mobilization, especially what is often termed ‘survivalist initiatives’, remains under-theorized and she applies social movement theory in order to offer a

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more analytical understanding of the subject. Asking what is taking place, who is involved, why it is happening, how the groups are managing to mobilize and where it is occurring, some of the important findings are that the mobilization are driven mainly by poor, black women, often HIV infected, in the marginalized townships of South Africa. Chazan’s empirical research and theoretical reflections also gives her good reasons to argue that the widespread notion that this form of mobilization is ‘apolitical’ is misguided. Quite on the contrary, these collective efforts should be seen as a form of grassroots AIDS politics that must be taken into account by middle-class activist organizations, the state, NGOs as well as transnational actors. Southern Africa is the region of the world that is hardest hit by the AIDS epidemic, but there are important lessons to be learned from other parts of the world as well. Part 4 (Responses from Civil Society: Latin America and Asia) includes three chapters dealing with AIDS politics in Brazil (13–14) and Thailand and Laos (15). While it is fair to say that the HIV/AIDS situation in Brazil today is not as alarming as it was when the epidemic first hit the country during the 1980s and 1990s, the epidemic in many Asian countries is by contrast far from under control; on the contrary, many predictions state that Asia is a region that will face increasing problems within the near future if an accurate political response does not come about. Chris Lyttleton presents two cases that in many respects contrast each other and presents two different roads to the future. In Chapters 13 and 14 Cristiana Bastos, and Veriano Terto and Jonathan García re-consider Brazil’s response to AIDS, most often reported as another success story of AIDS politics. In Chapter 13 (From Global to Local and Back to Global: the Articulation of Politics, Knowledge and Assistance in Brazilian Responses to AIDS) Cristiana Bastos takes as her point of departure the fact that Brazilian AIDS expertise is now exported to many parts of the world, including Asia and Africa. This makes it important to closely examine the ‘success story’ of Brazilian AIDS politics. According to Bastos recent discussions have emphasized two major explanatory factors: 1) the power of an organized civil society, and 2) the ability to bypass patent regulations in order to produce and distribute their own ARVs. While this narrative is not inaccurate, Bastos argues that it is nevertheless deeply problematic because it reifies both factors and creates a closed model; as with many other development projects attempts to replicate it through investment in single factors may be doomed to failure. In contrast the chapter opens up the ‘Brazilian model’, accounting for the social, political and technical aspects behind the country’s organized response to AIDS in Brazil and its ability to produce and distribute ARVs. Bastos’s account emphasizes global flows and local events. In a unique historical combination, international politics, funding and expertise shaped the local responses in a vibrant civil society that was in the process of throwing over a dictatorial, albeit pro-modern, regime. By the

12 The Politics of AIDS

mid-1990s, various social actors had reached joint-action platforms and consensus was strengthened after the findings about the effects of multiple ARVs. From then on, local action according to Bastos became coordinated, exemplary and helped shape global politics. From her contextualization of ‘the Brazilian case’ she concludes that the Brazilian AIDS politics can not be exported as a ‘model’. However, by examining the complexity of external and internal, local and global factors, in Brazil, other countries can learn and invent their own local–national agendas. In Chapter 14 (Mechanisms of Representation and Coordination in the Brazilian AIDS Response: A Perspective from Civil Society) Veriano Terto Jr and Jonathan García set out to reveal the main principles and mechanisms of representation and coordination of the Brazilian response to HIV/AIDS, focusing on processes in civil society. As the epidemic (just as in the US) first was perceived as a ‘gay disease’, gay rights organizations were the first to mobilize communities in reaction to the epidemic. It was however inevitable that the Brazilian AIDS movement became embedded in a broad mobilization of civil society for a democratization of the political system after 20 years of military rule. Arguing that democracy is a process, not a condition, Terto Jr and García apply the concept of ‘democratic citizenship‘ to analyse the deeper significance of embodied democratic rights in the context of Brazilian AIDS politics. In Chapter 15 (AIDS and Civil Belongings: Disease Management and Political Change in Thailand and Laos) Chris Lyttleton analyses how political, cultural and biological belonging is re-shaped as a response to HIV/AIDS in Laos and Thailand. Using the term ‘therapeutic citizenship’, he argues that HIV plays a formative role in civil society, as the politics of disease management breeds new social collectivities and political change unforeseen during the early days of the epidemic. As examples of the role of civil society mobilization, the cases of Thailand and Laos present stark contrasts. Associated with other new social movements in an increasingly vivid Thai civil society, which has played a key role in the democratization process originating in the 1980s, AIDS activism is acting both in order to check and balance state power, and to enlarge a political and moral space in which people living with AIDS can be recognized and advocated. This process of mobilization is currently accelerating – in 2002 there were 400 groups in the country, while in 2006, there were 900 groups with more than 20 000 members. If the Thai movement is highly visible and active, AIDS activism in Laos provides a completely different story. Here, civic initiatives are met with severe hostility, and even repression, by the state, which Lyttleton argues ‘is now best termed post-socialist, that is, an economically and socially capitalist state managed by a one party-regime that has “no intention of allowing liberaldemocratic reforms”’ (p. 266). In spite of this, there are civic initiatives related to AIDS, being part of an incipient civil society in Laos. The AIDS-related NGOs that exist in Laos do however come as part and parcel of international

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aid (which the economy of Laos relies on heavily), rather than originating from initiatives by Lao citizens. In Chapter 16 (Governing AIDS: Globalization, the State and Civil Society) we argue that the concept of ‘governance’, which highlights policy networks involving constellations of global, national and local actors, may be a fruitful approach for an improved understanding and analysis of politics in the new context of rapidly increasing globalization – if it is used in a cautious and critical way. While this approach emphasizes the global level of politics, several authors in this volume have put forth good theoretical arguments and empirical evidence highlighting that the state is still a crucial political level. However, the various cases of state politics discussed in this volume show that the contemporary state cannot be seen as the centre of politics – but rather as an important node in contemporary global networks of power. Further, there are strong reasons to argue that the political significance of civil society, on a national and global level, has increased in this new situation. A number of contributions in this volume have shown that any successful AIDS politics is dependent on the strength of civil society and the capacity and will of governments and other actors to interact with civic actors. For example, in both Brazil and South Africa, the state’s challenge of the transnational pharmaceutical industry and the international patent regulations would not have been successful without support from civil society. We also argue that an important lesson regarding the issue of democracy is that it is much more complex than what most policy makers are willing to admit. While it goes without saying that a democratic political response to HIV/AIDS is preferred by almost everyone (including the editors of this volume) in today’s world, the history of successful AIDS politics shows that combining a forceful response to the disease with strong democratic rights may present a dilemma rather than an unambiguous solution. A review of successful political responses to AIDS both in the Global South and the Global North show that a number of states, among them Sweden, favoured interventionist strategies that clearly subordinated civil liberties to the ‘collective good’. Still, international agencies based in the Global North most often make ‘democratization from above’ a condition for providing aid to AIDS in the Global South. This brings us to the final and perhaps most important conclusion: if it is beyond doubt that international aid to the Global South is a necessary component of a forceful global response to the challenge that AIDS presents to the contemporary world, several contributions in this volume present convincing evidence that such aid may do more harm than good if it is insensitive to national development and local initiatives and demands. This is however an under-researched issue that, considering the amount of money that is spent on aid, in the immediate future must be further investigated and analysed through social science research. Finally, we would like to underline that all the chapters in this book are based on a crucial assumption, which may seem self-evident to some, but

14 The Politics of AIDS

unfortunately does not seem to guide all policy makers in the world facing different stages of ‘AIDS crises’: even though we may perceive HIV/AIDS as a disaster, it is not a natural disaster in the sense that its causes and development are external to human action. Although HIV/AIDS in its most basic definition represents biological processes that breaks down the human body and ultimately leads to death, the disease must also be understood as a social, economic, cultural and political phenomenon. Not just the consequences, but the causes and the development of the epidemic, have profound political dimensions – which also means that it is possible to do something about it.

Note 1. At a late stage in the production of this book (December 2007), UNAIDS/WHO published a new assessment of the global number of people infected by HIV, a reduction to 33.2 million from the earlier estimate of 39.5 million. Most of the reduction is related to a radical reassessment of HIV prevalence levels by India, which together with revision for five Sub-Saharan African countries (Angola, Kenya, Mozambique, Nigeria and Zimbabwe) accounts for 70% of the reduction in HIV prevalence. It is only to be hoped that the new figures are more accurate – they are certainly good news. However, since the new estimates result from improved data and analyses, the UNAIDS revision does not affect the general conclusions drawn in this book.

References Altman, D. (2001) Global Sex. Chicago: University of Chicago Press. Barnett, T. and Whiteside, A. (2006) AIDS in the Twenty-First Century: Disease and Globalization. Second Edition. Basingstoke: Palgrave Macmillan. Beck, U. (1999) What is Globalization? Cambridge: Polity Press. Follér, M. and Thörn, H. eds. (2005) No Name Fever. AIDS in the Age of Globalization. Lund: Studentlitteratur. Held, D., McGrew, A., Goldblatt, D. and Perraton, J. (1999), Global Transformations: Politics, Economics and Culture. Cambridge: Polity Press. Poku, N.K. (2005): The Politics of Africa’s AIDS Crisis. Cambridge: Polity Press. Scholte, J.A. (2005) Globalization: A Critical Introduction. Second Edition. London: Macmillan. Thörn, H. (2006) Anti-Apartheid and the Emergence of a Global Civil Society. Basingstoke and New York: Palgrave Macmillan. UNAIDS (2007) AIDS Epidemic Update: December 2007. Geneva: UNAIDS/WHO.

Part 1 AIDS, Security and Global Governance

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2 State Fragility, Human Security and HIV Dennis Altman

HIV as a security issue In 2001, alongside the Sixth International Congress on AIDS in Asia and the Pacific (ICAAP) in Melbourne, the then Australian Foreign Minister, Alexander Downer, hosted a meeting aimed at regional foreign and finance ministers. Almost all countries invited sent their health ministers, apparently disregarding Minister Downer’s acknowledgement that HIV/AIDS is far more than a health issue. Despite 20 years of trying to situate AIDS within broader frameworks it is still regarded by most people, and many governments, as just another health issue. Yet already in the mid-1980s the United Nations Development Program was developing sophisticated analyses of the relationship between AIDS and development that made clear it was an issue that cut across almost all aspects of social, economic and political life in countries with major epidemics (Reid 1995). The motivation to formulate HIV as a security issue was born of a political desire to place it higher on the political agenda as much as through an analysis of its impact on global stability (see also Chapter 3). There is evidence that officers in the CIA had been urging their superiors to consider the impact of HIV/AIDS on national and international stability since the late 1980s (Gellman 2000; Garrett 2004: 23). This view was expressed in several high level reports such as that complied jointly by the Chemical and Biological Arms Control Institute and the Center for Strategic and International Studies in the United States which claimed to ‘directly link health and global security for the first time’ (Chemical and Biological Arms Control Institute 2000). The report stressed the rapidity with which infections can spread; the threat of biological weapons; and the consequences for health of regional conflicts and failing states. The emerging discussion on HIV and security drew on reports of very high rates of infection among some armed forces and concern about the impact of peacekeeping forces, with some probably exaggerated claims about soldiers spreading infection. Claims started to appear that: ‘The military sector is 17

18 The Politics of AIDS

increasingly a matter of concern, because the growing rate of infection among military personnel is raising serious questions about the capacity of the armed forces to maintain order, and be mobilized to deal with threats’ (Carballo et al. 2000: 4). More recent work has cast doubt on some of these claims, and requires us to rethink the linkages between HIV and security. It is not evident that the major linkages are due to high rates of infection among the armed forces, if only because military forces are increasingly screening for HIV and debarring recruits who are positive (which may well create a pool of bitter and unemployed young positive men in some countries). Even so, the figures that are consistently quoted for military forces in many African countries indicate a real reason for concern, especially given the importance of the military as one of the few agencies of the state able to provide room for upward mobility (Tripoli and Patel 2002). It is possible that peacekeeping forces have significantly hastened the spread of HIV, as has been claimed for Haiti, Sierra Leone and Cambodia, but again hard data is not available. The United Nations now has programs in place to address the possibility (Bratt 2002). The linkages between HIV and security was taken up publicly by the United States at the end of the Clinton Presidency, when the issue was placed on the agenda of the Security Council, largely due to American pressure, influenced particularly by Vice President Al Gore and Ambassador Richard Holbroke. In their resolution the Security Council stressed that the pandemic, ‘if unchecked, may pose a risk to stability and security,’ and referred to the ways in which ‘conditions of violence and instability’ increased the risk of exposure to HIV (Security Council 2000). The following year the General Assembly devoted a special session to the issues of HIV/AIDS and resolved that the epidemic, especially in Africa, was ‘a state of emergency which threatens development, social cohesion, political stability, food security and life expectancy, and imposes a devastating economic burden’ (UN General Assembly 2001: para 8). This declaration was revisited in mid-2006, when the General Assembly declared that the epidemic ‘constitutes a global emergency and poses one of the most formidable challenges to the development, progress and stability of our respective societies and the world at large’. The language employed here echoes previous calls by public health experts to formally declare HIV/AIDS a disaster (Stabinski et al. 2003). The Security Council resolution had employed a largely traditional language in its emphasis on states and the military – its final call for action referred to ‘relevant United Nations bodies, Member States, industry and other relevant organizations’ without any mention of civil society. But both the Security Council and the General Assembly drew as well on the newer language of human security, with its emphasis on non-military threats to security and state viability. The language of the General Assembly, though hotly contested, did go far further in acknowledging the human

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and civil society aspects of the epidemic and the nature of responses it demands.

‘Human security’ The concept of ‘human security’ was developed in the 1990s through the United Nations Development Program (UNDP), with particular support from the Canadian and Scandinavian governments. UNDP developed the concept of human security, locating the concept of security within a framework of ‘the legitimate concerns of ordinary people’, and encompassing safety from chronic threats of hunger, disease and repression and protection from sudden disruptions in the patterns of everyday life. In brief, human security places the emphasis on protecting individuals and communities rather than merely state boundaries (Thomas 2000). More recently, UNDP has linked these definitions of human security to the rapid changes and insecurities brought about through globalization: ‘In the globalizing world of shrinking time, shrinking space and disappearing borders, people are confronting new threats to human security – sudden and hurtful disruptions in the pattern of daily life’ (UNDP 1999: 3; see also Smith 2004: 508–10). In some ways this conceptualization appears to echo the currently fashionable idea of ‘risk society’, a term which is often used to characterize the contemporary condition. Analyses of ‘human security’ tend to emphasize the community and individual, socio-economic and environmental threats and unstructured violence as deliberate counters to the state centered approach of more traditional concepts of security (Tow and Trood 2000: 9). The UNDP definition is, of course, very broad, and in the enthusiasm for the concept human security came to encompass almost all threats to humans, including economic inequality, population growth and natural disasters (Sabur 2003: 40–4). The basic argument for conceptualizing HIV within this framework is summed up in a paper on AIDS and Security written for UNAIDS: In exploring the links between AIDS and security, and the steps needed to reduce the epidemic’s impact, this paper draws on both the traditional understandings of security (which emphasizes territorial integrity and national sovereignty) as well as on the more expansive understanding (which incorporates the state’s capacity to protect and promote the well-being of citizens). Capturing the interplay between AIDS and security requires a broader and more inclusive concept of security: one that is human-centric and recognizes states’ obligations to guarantee citizens’ security. (van den Assum 2005; see also Altman 2005) The argument is cyclical: widespread HIV infection helps create conflict and instability but it is also more likely to spread – and less likely to be

20 The Politics of AIDS

effectively managed – in conditions of civil disorder. While Colin McInnes has claimed that ‘no empirical evidence to date suggests that HIV/AIDS has led to an increased rate of conflict in a country’ (McInnes 2006: 317) we could also ask what would constitute empirical evidence of, say, HIV further acerbating the preconditions for conflict in many of the countries where both have been evident, such as Rwanda, the Democratic Republic of the Congo (DRC), Uganda or Zimbabwe. Moreover it is in post-conflict situations, when populations are free to move but many social structures and mores have been destroyed, that populations are probably most vulnerable. The consequences of escalating commercial sex in the countries surrounding Iraq following very widespread dislocation are yet to become apparent. Nonetheless, there are some powerful arguments against over-securitizing HIV/AIDS. In their overview of human security MacFarlane and Khong argue for confining security issues to those involving organized violence, which excludes disease and they point to confusion between the impact on humans (thus accepting the need to look beyond the impact on states) and the actors involved (which they restrict to organized humans, usually, but not exclusively, states). If I read their argument correctly civil war in Darfur is a human security issue but AIDS is not, and ‘food security’ is a consequence of both security issues – conflict and actions of armed militia – and non-security causes such as drought. There are some dangers in stretching the concept of security too broadly – what MacFarlane and Khong identify as ‘conceptual overstretch’ (MacFarlane and Khong 2006: 236–43) – and they are clear that in the end: ‘HIV/AIDS is a health, not a security, issue. It does not involve individuals organizing to harm other individuals or do them in’ (ibid. 249). A similar view is expressed by Ostergard (2004: 146). In this view AIDS is perhaps like a tsunami, which has huge impact on human welfare but is not due to human agency. This is why comparisons between AIDS and the Holocaust are offensive and misleading, for government inaction is not equivalent to deliberate acts of genocide. Moreover, to securitize AIDS can lead to authoritarian responses and the further stigmatization of those who are, or are presumed to be, positive: if we talk of a security threat we need invoke a tangible enemy, and there is some history in the epidemic of turning the most vulnerable into targets of hostility. There is a useful warning against too broad an appeal to security concerns in the history of the United States ‘war on drugs’, and the linking of drug prohibition to justification for American military interventions in Latin America. If Macfarlane and Khong are right we need move to conceptualizing HIV as a problem of politics rather than security, as is suggested by the constant stress in UNAIDS documents on ‘political commitment’ as a crucial variable. Yet the link between security, state fragility/failure and HIV is too powerful a metaphor to totally abandon, for two reasons, even recognizing Susan Sontag’s warning against such metaphors (Sontag 2002). First it allows us to think of long-term impact of HIV as equivalent to conventional military conflict in

Dennis Altman 21

its ability to destroy a society. And using the analogy allows us to point to the allocation of resources by governments. Elsewhere I have used the example of the South African government commissioning new submarines to meet an unstated threat while millions were infected with HIV, but we could also use examples from Central and South Asia of governments that engage in huge military expenditures but are unwilling to use their own resources to prevent the dramatic growth of HIV epidemics. While there are powerful arguments for international assistance, the strongest responses to the epidemic have occurred where governments have allocated some of their own resources, however scarce, to comprehensive programs of prevention, care and support.

A disease of globalization As many of us have argued HIV is a disease of globalization (Altman 1999; Barnett and Whiteside 2002; Lee and Zwi 1996; see also Chapter 3), and this is apparent in its epidemiology, the international mobilization against its spread, and the dominance of certain discourses in the understandings of the epidemic. BUT responses to the epidemic need to be primarily at the state level, if only because states control resources and environments that make international and communal responses possible. The importance of ‘enabling environments’, which allow those infected and affected to articulate their needs and organize around them is crucial, and without supportive governments community level and peer education, care and support – the basic building blocks of the most successful responses to HIV – cannot succeed. Most states have not been able to respond well to HIV: the exceptions are well known and constitute a fairly short list. There is something of a consensus in naming Brazil, Thailand, Uganda, Senegal and Cambodia, although careful examination shows some problems and lacunae in each of these. In every case, however, there is some degree of political commitment, usually from the very top levels of government, and certain common characteristics: a willingness to speak openly about HIV and its spread; a recognition of the links between prevention and treatment; at least some degree of widespread access to antiretroviral therapies; a determination to control national programs and spend their own resources. In poorer countries funding for HIV/AIDS is largely external, but it is important to demand that states which are building up their military find resources for basic HIV prevention and care, if only to maintain a sense of local ownership and commitment. Given that HIV is often most prevalent in countries with weak infrastructures and limited resources, there is a clear link to larger concerns about the ability of many states in the contemporary world to meet the minimal obligations of government to their citizens. These concerns have made it fashionable to speak of failed states, though some agencies, such as Britain’s

22 The Politics of AIDS

Department for International Development (DfID) and Australia’s Department of Foreign Affairs prefer the term fragile states. There are several indices of failed states; one from the Washington-based research organization, the Fund for Peace, defines failure in terms of 12 variables, and lists about 80 countries – of the top all but Iraq are in Africa (Fund for Peace 2006). To some extent this matches the World Bank’s governance index which measures a number of indicators – voice and accountability; political stability; government effectiveness; regulatory quality; rule of law; control of corruption – that together suggest the viability of states (Kaufmann et al. 2005). As an antipodean aside, in both cases Papua New Guinea, East Timor and the Solomons appear to be insufficiently analysed, although Papua New Guinea becomes particularly relevant to this discussion as it already has a generalized and fast-growing epidemic, one that is arguably potentially similar to that of southern Africa (Butt and Eves 2007). I prefer to talk of state failure or fragility, reversing the grammar of the phrase, as all states will fail on some indicators, as the US response to Hurricane Katrina graphically reminds us. Indeed the Fund for Peace only sees a minority of countries as ‘sustainable’: a majority of western states, including the United States, France, Britain and Germany, are deemed as requiring ‘monitoring’. It has become commonplace to observe that HIV hastens state collapse which in turn helps create the conditions for further transmission of HIV. The reality is probably more complex: the states with highest HIV incidence in Africa are not the most fragile, and some that are – Liberia or Sudan, for example – are not among those with the highest HIV prevalence. Ironically there are suggestions of falling HIV incidence in Zimbabwe, which may be due to declining mobility and income. Sometimes exaggerated claims of the links between HIV and state fragility have been made, as in assertions that increasing HIV will breed terrorists, which seems very unlikely and quite unsupported by any evidence. What is clear is that AIDS has the potential to destroy whole societies. As Mark Malloch Brown, then head of UNDP, puts it: HIV/AIDS has a qualitatively different impact than a traditional health killer such as malaria. It rips across social structures, targeting a young continent’s young people, particularly its girls; by cutting deep into all sectors of society it undermines vital economic growth – perhaps reducing future national GDP size in the region by a third over the next twenty years. And by putting huge additional demand on already weak, hard to access, public services it is setting up the terms of a desperate conflict over inadequate resources. (Malloch Brown 2000) The toll of HIV/AIDS is cyclical, as already limited professional skills are lost, food production declines, health systems are stretched beyond their capacity,

Dennis Altman 23

etc., and with these losses the ability to limit further transmission is itself weakened. But there is also a more long-term impact of the epidemic; the steady decline in life expectancy and growing numbers of orphans seem to be matched by rising births, which suggests both resilience and possible future problems. We know little about the real psychosocial consequences of HIV: is the cycle of political irrationality and violence that is apparent in countries like the DRC and Zimbabwe linked in some ways to the impact of the epidemic? What happens to people dealing with an immense overload of grief, loss and denial? How much death and illness can already weak state structures support? For millions in southern Africa caring for the ill and burying their dead has become a central part of everyday life, removing them from active involvement in other civil activities (see Unity Dow on Botswana 2002). We don’t fully understand all the long-term effects of living with an ongoing epidemic, though as Alex de Waal has stressed there is a powerful intuitive reason for suspecting that most models understate the adverse impacts of AIDS (de Waal 2006). De Waal also stresses human resilience, as in the case of famines where HIV seemed to have been a contributing factor, but even the most resilient of societies cannot thrive where considerable numbers of its most productive members are falling sick and dying at the rates now common across parts of Africa.

AIDS and democracy While there are some rhetorical claims that democracies will respond better to AIDS, perhaps echoing Amartya Sen’s famous comment that famines do not occur in democracies, the evidence is mixed. Political commitment is clearly essential, but such commitment doesn’t necessarily result from democratic processes, which may indeed favour populist scare campaigns rather than appropriate responses. One political scientist claims that there is a significant connection between a free press and government commitment (Bor 2007) but the connection remains uncertain. There is evidence to support the claims that good responses demand grassroots/community action, which is related to the existence of sufficient political space for groups to organize free from government interference (Altman 1994). But even though this argument seems persuasive there may well be counter examples in current mobilization by government in China and Vietnam, where state controlled organizations are able to manage certain forms of effective prevention campaigns. Cuba, whose original response included quarantine of HIV positive people, for which it was denounced by many international experts, can also claim to have thereby forestalled a major epidemic. That a strong civil society can achieve a great deal even in face of government hostility is clearest in South Africa, where the government is constantly prodded by civil society through groups such as the Treatment Action

24 The Politics of AIDS

Campaign (Achmat 2006). There are several contributions to this volume from South Africans, so I will merely note the irony that a government which can boast of having successfully ended apartheid and institutionalized democracy has battled its own citizens for a decade as they have sought to persuade that government to respond rationally to the HIV crisis. Indeed the South African response is an excellent example of the danger of assuming that democratization in itself will improve governmental responses to HIV: this may be true in Brazil, but it has not proven to be the case in South Africa, the Ukraine or, until recently, Indonesia. That said, it is only the democratic framework of the South African state that has allowed space for groups like the TAC to develop and organize large and public demonstrations, and for all its failures the South African government has not silenced, or seriously attempted to silence, debate on the epidemic, even if it is clearly angered by some of its critics. Human security is another way of thinking about state failure – the condition when states threaten rather than defend individual security, either through intent or neglect. Of course this changes the debate: strong states might threaten human security more than weak. Thus governments which refuse to recognize the realities of sex and drug use are contributing to the spread of HIV, but through their ability to enforce prohibitions, not through their fragility. When agents of the state arrest prevention outreach workers, or prevent any acknowledgement of or prevention work with sex workers, homosexual men or drug users, they are not exhibiting state failure in the way that term is usually used, but they are certainly exhibiting a failure to respond to the challenges of HIV transmission. Once one turns the terms ‘failed state’ to ‘state failure’ one is measuring rather different characteristics, so that a ‘strong’ state may well fail on any number of measures where ‘weaker’ states do quite well. AIDS demands equal responses at all levels: community, international and national are all interconnected, and we need good policy research to see which works best under different national conditions. The rhetoric of the international AIDS world suggests that political commitment is vital, but while one can point to very high level leadership in countries like Uganda (see Chapters 6 and 7) and Thailand, it is less clear that this was the key factor in Brazil, even though Brazil’s is generally seen as the most impressive response of all middle income countries (see Chapters 13 and 14). Community mobilization is important, and again one can find striking examples in a number of countries, but it is also fragile and difficult to sustain, as a detailed study of AIDS in Senegal would reveal. Strongly Islamic regimes appear successful in slowing the onset of the epidemic, but also, one suspects, are not good at preventing its spread once it takes root in society. As the language of international security has focused more on terror and state collapse we need to rethink the connections of ‘the human’ to notions of

Dennis Altman 25

both security and politics. In the end, as the South African political scientist Pieter Fourie writes: The new security agenda, namely that ‘traditional’ and ‘human rights’ approaches to AIDS and security are no longer antithetical, can be taken as a paradoxical ‘gift’ of the AIDS pandemic – HIV has provided Africans as well as global elites with a wholly novel way of viewing crises, enabling social learning about what it means to be ‘secure’, what it means to be a caring global society, and how to implement a more just and fair global context. (Fourie 2006: 14) The emphasis on terrorism since 2001, and the escalation of traditional security tensions around Iraq, Palestine and the proliferation of nuclear weapons, has meant some decline in the interest in viewing HIV/AIDS through the lens of human security. Yet if Fourie is even partially correct HIV/AIDS needs to be studied by far more than just those immediately concerned with questions of health.

References Achmat, Zackie (2006), ‘Make Truth Powerful’, Closing Address Microbicides Conference, Cape Town, 26 April 2006. Altman, Dennis (1994), Power and Community, London: Falmer. Altman, Dennis (1999), ‘Globalization, Political Economy and HIV/AIDS’, Theory and Society 28: 559–84. Altman, Dennis (2005), ‘HIV and Security’, International Relations 17(4): 417–27. Barnett, Tony and Whiteside, Alan (2002), AIDS in the Twenty-First Century, Basingstoke: Palgrave. Bor, Jacob (2007), ‘The political economy of AIDS leadership in developing countries’, Social Science and Medicine 64: 1585–99. Bratt, Duane (2002), ‘Blue Condoms: the use of international peacekeepers in the fight against AIDS’, International Peacekeeping 9(3): 67–86. Butt, Leslie and Eves, Richard (2007), Making Sense of AIDS: Culture, Sexuality, and Power in Melanesia, University of Hawaii Press. Carballo, Manuel, Mansfield, Carolyn and Prokop, Michaela (2000), ‘Demobilization and its implications for HIV/AIDS – A background paper’, Geneva: International Centre for Migration and Health (ICMH). Chemical and Biological Arms Control Institute and Center for Strategic and International Studies (2000), Conflict and Contagion: Health as a Global Security Challenge Washington DC. de Waal, Alex (2006) AIDS and Power, London: Zed Books. Dow, Unity (2002), The Screaming of the Innocent, Melbourne: Spinifex. Fourie, Pieter (2006), ‘The United Nations and the securitization of HIV/AIDS’, seminar on HIV/AIDS and Human Security in South Africa, Centre for Conflict and Conflict Resolution (CCR), Cape Town, South Africa, June. Fund for Peace (2006), Failed State Index, Washington [http://www.fundforpeace.org/ programs/fsi/fsindex.php]

26 The Politics of AIDS Garrett, Laurie (2004), ‘HIV and National Security: where are the links?’ Council on Foreign Relations Report, New York. Gellman, Barton (2000), ‘Death Watch: The belated global response to AIDS in Africa’, Washington Post, 5 July. Kaufmann, D., Kraay, A. and Mastruzzi, M. (2005), Governance Matters IV: Governance Indicators for 1996–2004, Washington: World Bank Institute. Lee, Kelly and Zwi, Anthony (1996), ‘A Global Political Economy Approach to AIDS: Ideology, Interests and Implication’, New Political Economy 1(3): 355–73. MacFarlane, Neil and Khong, Yuen (2006), Human Security and the UN, Indiana University Press. McInnes, Colin (2006), ‘HIV/AIDS and security’, International Affairs 82(2) March: 315–26. Malloch Brown, Mark (2000), Statement at Security Council Meeting, 10 January. Ostergard, Robert (2004) ‘Politics in the hot zone: AIDS and national security in Africa’ in Poku, N. and Whiteside, A. (eds): Global Health and Governance, London, Palgrave Macmillan: 143–60. Reid, Elizabeth (1995), HIV and AIDS: The Global Inter-Connection, New York: Kumarian Press. Sabur, Abdus (2003), ‘Evolving a theoretical perspective on human security’, in Chari, P.R. and Gupta, Sonika. Human Security in South Asia, New Delhi Social Science Press. Security Council (2000), Resolution 1308: on the responsibility of the Security Council in the maintenance of international peace and security: HIV/AIDS and international peacekeeping operations. Smith, Stephen (2004), ‘Singing our world into existence: International Relations theory and September 11’, International Studies Quarterly 48: 499–515. Sontag, Susan (2002), Illness as Metaphor & AIDS and its Metaphors, London: Penguin Classics [first published 1989]. Stabinski, Lara et al. (2003), ‘Reframing HIV and AIDS’, British Medical Journal 327, 8 November: 1101–3. Thomas, Caroline (2000), Global Governance, Development and Human Security, London: Pluto. Tow, W. and Trood, R. (2000), ‘Linkages between traditional security and human security’, in Tow, W., Thakur, R. and Hyuen I. Asia’s Emerging Regional Order, Tokyo: United Nations University. Tripoli, Paolo and Patel, Preeti (2002), ‘The global impact of HIV/AIDS in peace support operations’, International Peacekeeping 9(3): 51–66. UNDP – Human Development Report (1999), Globalization with a Human Face. Human Development Report Office, New York: UNDP. United Nations General Assembly Declaration of Commitment on HIV/AIDS 25–27 June 2001. van den Assum, Laetitia (2005), ‘Towards a UNAIDS Framework Agenda for AIDS and Security’, paper written for UNAIDS.

3 A Long Wave Event: HIV/AIDS, Politics, Governance and ‘Security’: Sundering the Intergenerational Bond? Tony Barnett1

Introduction There is a disharmonious resonance between the life cycle of the Human Immunodeficiency Virus and that of its human host. In heavily affected countries many people live long enough to reproduce and then die, leaving behind numerous orphans. This process has implications that we do not understand. While some foresee social disorder arising from legions of poorly socialized and unruly children grown to adulthood, the evidence is far from clear. Those arguments and the evidence are reviewed here, particularly in relation to the links between premature death and electoral processes in Southern Africa. More than 20 years ago the question of whether or not the HIV/AIDS epidemic was going to have ‘impacts’ was widely disputed. Now we know differently. Those impacts exist, are poorly understood, and may have serious long-term consequences. We can either be aware we need to confront these some time in the future or, better, try to avoid them by taking action now. Acting now and in the near future to avoid impacts will save lives and suffering in other countries. As well as meeting these altruistic goals, such actions may even be in the long-term self interest of donor countries. Whether or not these impacts include ‘security’ effects, what these effects might be, whom they might affect, and how and why are all important questions to which we have few answers and little evidence on which to base our answers. Here I do two things: (a) discuss the existing evidence and argument and conclude that we cannot easily draw any clear link between the HIV/AIDS epidemic and ‘security’; (b) explore the issue of AIDS, politics and ‘security’ from the perspective of the deep relations between the nature of the pathogen, its social effects and the resultant political processes and consider what we might possibly say about the issue of HIV/AIDS and ‘security’. 27

28 The Politics of AIDS

Security is a troubling and greatly evocative word (see also Chapter 2). It can be taken to refer to the individual, communities, states or, most generally, the global community. Most often it is applied to states, and it is mainly in this sense that it is used here. However, such usage has dangers, not least in its neglect of other possible meanings, and also in its linkage to a variety of events, such as an HIV/AIDS epidemic, in which the effects of these events are discussed as though their greatest and perhaps only importance is because they supposedly pose a threat to a particular state or group of states. In so doing, others meanings may be obscured or their importance neglected. There is a danger that this is happening, in that some commentators are apt to draw too direct and simple a link between HIV/AIDS and security – and that on the basis of little solid evidence (see US administration documents cited below and Garrett 2005).

HIV and humans: a disharmonious resonance To begin with, we must attend to the evident disharmonious resonance between the life cycle of the virus, the length of infection in the individual human host and the length of a human generation. Put briefly, an infected person has children, these are orphaned and may grow up to become infected, but not before they have themselves had children – who are orphaned in turn. Hence a basic unit of social structure in most human societies, the three generation bond between grandparents, parents and the current generation – and on into the future – is rent asunder. Given mean life expectancies and reproductive cycles, such a bond probably spans about 70 years with variation depending on life expectancy and reproductive outcomes. In the absence of effective, sustainable and available ARV (antiretroviral) treatment regimens, a vaccine or behaviour change, this happens repeatedly. Moreover, this process should be read against the possible threat of developing viral resistance to existing ARV regimens when these are used widely in ‘resource constrained’ – for which read poor and ill-resourced – settings where sustainability is dependent on donor commitment. There are two kinds of resistance, the first, acquired resistance which manifests itself in an individual patient and is resistance to their particular drug regimen. Such resistance to individual ARVs or whole classes of ARVs is seen in as many as 20 per cent of patients seen in the UK and the US. In Thailand, recent reports suggest the appearance of widespread resistance to locally produced versions of Lamivudine, Nevirapine and Stavudine (The Nation (Thailand), 15 July 2005; personal communication from Dr Wasun Chantratita). This is not only resistance to the individual drugs but also to whole classes of these drugs. Second, and more worrying, is the possibility of viruses which have acquired resistance to particular ARVs or classes of ARVs being transmitted between people: this is transmitted resistance. The current evidence on this is very limited (Baggaley

Tony Barnett

29

et al. 2005; O’Rourke 2005; Smith 2005; Wainberg 2004; Little et al. 2002: 385–94; UK Group on Transmitted HIV Drug Resistance 2005: 1–6). The epidemic is producing very large numbers of orphans in poor and politically fragile societies (UNAIDS/UNICEF/USAID 2004). Children brought up in difficult circumstances develop a pragmatic and short-term survival perspective (Daniel 2005).2 Furthermore, behavioural change messages about HIV/AIDS may have the unintended consequence of stigmatizing the parental generation who are seen by their children as having acted sinfully and to have breached taboos. In many societies, and perhaps pronouncedly in Africa, respect for the ascendant generation is said to be a central cultural value. In such places and against the background of stigma, the intergenerational structural break may appear as loss of respect for elders in general: this at a time when rapid change is in any case already contributing to that process. In these circumstances, this breach is combined with an unmoderated pragmatic orientation towards the world, a rational orientation for children and young people who in any case are hard-pressed merely to survive from day to day. This may have substantial implications for social and political relations at the household, community, and ultimately the national level when these inadequately socialized people reach adulthood. Some observers of these processes see such orphans as a threat to local and international order. Bluntly put, those who are orphaned may be indifferent to prevailing norms and values, or look for salvation in millenarian and fundamentalist beliefs of one kind or another, and may ultimately do this with assistance from a Kalashnikov or a bomb. There is as yet little evidence to suggest that this is happening or that it will happen, but it is a view which is held by some of those who determine foreign policy in, for example, the United States. For these reasons, the implications of large scale orphaning and its relation to security do merit examination. A recent comprehensive and relatively measured report by the South African Institute for Strategic Studies says: The HIV/AIDS epidemic will cause major social changes in Southern Africa, and will most likely change the face of communities and societies in ways that we now find hard to imagine. In particular, the long-term consequences of the trauma many children will experience could be severe if adequate psychosocial care and support are not provided to all children affected by HIV/AIDS in the region. (Germann 2004: 112)3 There should be no doubt that the HIV/AIDS epidemic is extremely serious. Its impact is also serious and extends over generations and may have global implications. Our response to its challenges raises many important questions with which we must engage when we consider (a) what we believe is actually happening; (b) what evidence we have for those beliefs; and (c) how we develop policies as part of that response. Whatever the uncertainties, when

30 The Politics of AIDS

it comes to the implications of the HIV/AIDS epidemic for future politics and governance, we must take heed and we must act on the best information and advice that we can garner.

What is happening? We first became aware of the HIV/AIDS epidemic in the early 1980s – assumed at that time to be confined to gay men in Europe and North America. That was then: fast forward to now. We see a huge epidemic, indeed what some prefer to call a pandemic. It might be more honest to recognize that with viable vaccines at least a decade away – and this pessimistic prediction has already remained fairly constant for a decade or more – we are really living with an endemic. In other words, HIV/AIDS is not going away in the near or foreseeable futures. It will be a constant presence in the lifetimes of most of those reading this. With its awful global reach, present on all continents and reported from every country in the world, resulting in millions of infections and millions of deaths, it is frequently compared to the Black Death. Thus, The Black Death . . . better informs the discussion of HIV/AIDS, though it claimed its death toll, featuring the elimination of more than a third of the European population, in roughly eighteen months’ time. Because the timeline of the Black Death was so short, it is easier to discern the impact the Yersinia pestis bacterium had on European societies. Striking similarities between HIV/AIDS and the Black Death can be seen, including the reshaping of the demographic distribution of societies, massive orphaning, labor shortages in agricultural and other select trades, strong challenges to military forces, an abiding shift in spiritual and religious views, fundamental economic transformations, and changes in the concepts of civil society and the roles of the state. (Garrett 2005) It is not clear whether the comparison is really useful; but when it is associated with a security agenda, it accretes another level of threat which may inadvertently associate it with another aspect of the security agenda, ‘the war on terror’. The combination of AIDS, orphans and terror begins to take on an independent life, perhaps regardless of either the strength of the evidence or the precise value of the parallel. In these circumstances, it becomes of the greatest importance to understand that HIV/AIDS confronts us with a new type of challenge – the challenge of a long wave event and how to begin thinking about such events. Official statistics as published by UNAIDS, the UN agency charged with coordinating the global response to the epidemic, are astounding and awful. Allowing for margins of error – and the pressures for exaggeration and spin

Tony Barnett Table 3.1

31

Global summary of the HIV/AIDS epidemic, end 2005 Estimate

Range

4.9 million

[4.3–6.6]

4.2 million 700 000

[3.6–5.8] 630 000–820 000

40.3 million

[36.7–45.3]

Adults Women Children <15

38 million 17.5 million 2.3 million

[34.5–42.6] [16.2–19.3] [2.1–2.8]

AIDS deaths in 2005

Total Adults Children <15

3.1 million 2.6 million 570 000

[2.8–3.6] [2.3–2.9] [510 000–670 000]

Total number of AIDS deaths since the beginning of the epidemic

Total

>25 million

Total number of AIDS orphans* since the beginning of the epidemic

Total

c. 14 million

Projected total number of AIDS orphans by 2010

Total

c. 25 million

Number of people newly infected with HIV in 2005

Total Adults Children <15

Number of people living with HIV/AIDS

Total

Note: * Defined as children who lost their mother or both parents to AIDS when they were under the age of 15. Source: US Bureau of Census (accessed 2007).

born out of the natural demands of advocacy in an ever-more cacophonous arena of demands for humanitarian action in a troubled world (Barnett et al. 2004: 20–2),4 – we must not remain unmoved. The current situation is summarized in Table 3.1. Even given the limitations of current disease surveillance methods and epidemic models, these figures are terrifying. Whether or not a society’s adult seroprevalence level is above 40 per cent (as in three southern African countries, Swaziland, Lesotho and Botswana), or at 35 per cent, 20 per cent or ‘only’ 5 per cent is of importance – but of only limited importance. These are all appalling levels which bode ill for any society. This is a terrible disease which kills, slowly, again and again. In India, estimates of numbers of people infected top five million, with a range between 2.5 million and 8.5 million (UNAIDS 2004). If the UK had a mortal infectious disease epidemic where prevalence levels were reported by the Health Protection Agency at a fraction of the levels in Africa, India (see, for example, Samura 2005), Papua New Guinea, Ukraine, Russia or a host of other countries, something would have to be done! But the global figures do not terrify us enough, we do not comprehend their implications, the reality is

32 The Politics of AIDS

geographically distant; their implications are distant in time. We do not attend to their implications. Why is this? There are several reasons why we may not be fearful enough. The first is perhaps scepticism as to the strength of evidence for the epidemic’s impact. Is this event actually happening and is it any different from numerous other dramatic crises occurring in the world? The second is that even if we accept that it is happening, we do not really know what to do about it (for these first two, see Barnett and Whiteside 2006). The third and fundamental problem is that we do not really know how to understand such an event. This is because it falls into a special class of events containing a small number of other slowly unfolding nightmares, one of which is global climatic change. Recent debates around the 2005 G8 meeting in Scotland show how hard it is to shift the US administration when its short- and medium-term material and political interests are threatened by acknowledgement of the seriousness of that possibility even in the face of the strongest scientific evidence and consensus (National Research Council, 2001; Joint Science Academies’ Statement)!

A long wave event This is a long wave event, one where troubling and large scale effects emerge gradually over decades. Many abrupt happenings, ‘disasters’, have long-term sequelae. Long wave events are not the same as these short wave events which have long-term effects. The distinction is subtle but important. Take an infectious disease with a short incubation period and a high rate of mortality – for example cholera. This has long-term effects inasmuch as people die and leave others bereft, but the event itself has a short wave form. We know that it is happening soon after it begins, we respond to it as best we can through public health measures and vaccination and treatment of infected and sick people. Similarly with a natural event such as a volcanic eruption or the 2004 Asian tsunami. Again, the effects were immediate and the need to respond was instantly apparent. But it is not only ‘natural’ events which fall into this category – indeed, a large and developed body of thought argues that there is no such thing as a ‘natural’ event (Blaikie et al. 2003): ‘natural events’ are the result of acts of human commission or omission. The tsunami created a human disaster because we had not established the necessary monitoring facilities and because the poor live within the flood range more than do the rich; the effects of global climatic change threaten future generations because we cannot achieve the political consensus to do something about it. However, long wave events can be clearly distinguished from these. Apart from the HIV/AIDS epidemic, some other events seem to fall into this class. They include: global climate change, arsenic poisoning from deep bore wells in Bangladesh, and possibly the epidemic of obesity in some societies. There are undoubtedly others: indeed these form the research agenda of the recently established MacKinder Centre for the Study of Long Wave Events at the

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London School of Economics. The point about such phenomena is that while they are not necessarily easy to identify at one point in time, they do share the following distinguishing features:

• we are usually unaware of their starting points; • by the time we become aware of their presence, dynamics and effects, it • •

• • •

takes a long time to slow down the process or to stop it – and in many cases the event may turn out to be unstoppable; engagement with their implications and long-term ramifications requires long-term thinking different from that which is familiar to us from experience with short wave events; a central reason these events are difficult to halt is that it is enormously hard to get people in positions to act to recognize them, mobilize resources for what they are, and take appropriate action. Such events fall outside the normal time horizons of politicians and business strategists for whom the ‘long term’ usually means five years; long wave events are likely to cover many decades and probably much longer; managing the consequences of long wave events makes novel demands and our existing experience is not necessarily a good guide to how we should respond; most political and administrative capacities are not established to deal with such events; when ‘discovered’, they are thought of and reacted to as ‘emergencies’, creating a probability that actions taken for good in the short term will make the situation worse in the long term.

HIV/AIDS is just such an event because of the peculiar and particular characteristics of the disease pathogen – HIV.

The distinctiveness of HIV The relation between the epidemic, its social effects (for example, large scale orphaning) and possible political outcomes directs us to the pathogen. There is a direct route from the characteristics of the pathogen through the course of the disease to its effects on human life cycle and intergenerational relations. HIV is a retrovirus: a fairly small group of viruses where the core is composed of RNA (ribonucleic acid) rather than the more common DNA (desoxyribonucleic (or deoxyribonucleic) acid) found in other life forms. The significance of this is that multiplication requires that it colonizes host cells; in this case, the cells of the human immune system. The virus converts these into ‘factories’ producing more viral particles. In the process the host cell is destroyed and many tens of millions of viral particles are expelled into the body of the infected person.

34 The Politics of AIDS

The human host’s immune system fights back and over a median period of about eight years (Whitworth et al. 2003)5 there is a continuing battle between host immune system and viral population. An infected person has greatly varying viral load over this period. This influences potential infectiousness to other people, susceptibility to other infections and state of health. A key feature of the virus, its translation of RNA to DNA, means it is particularly liable to errors in transcription of the genetic code, resulting in a high frequency of ‘mistakes’. These mistakes mean that within the human host, the virus is mutating and over time these mutations accumulate. The result is increased size of the pool of viral variation within an individual. It is this which enables the virus to outwit the human immune response and also in some cases ARV treatments. Because of the typically slow progress from infection to death, this group of viruses are described as lentiviruses, slow acting viruses. Viral mutability and the further possibility of recombination of mutated viruses with each other – both in individual people and in cases of re-infection of an already infected person, with a new viral clade – have serious implications. Particularly worrisome is possible development of either acquired or transmitted viral resistance where supplies of medication are interrupted and/or treatment compliance falls below 95 per cent for other reasons. The relatively long period that it takes for the HIV to prevail over the host immune system has social and economic implications. For much of the time, an infected person is in reasonable health and able to function at some socially and economically satisfactory level. They are also, of course, capable of sexual relations, and particularly infectious in the period after an initial viraemic episode (about 2–12 weeks from infection) and before terminal increased viral load sets in – anything between a few months to many years after infection. Depending on the social, cultural and economic environment, the reproductive rate6 of each initial infection can be greater or smaller. It is important to note that the sexual nature of transmission and the long viral life cycle (combined with high mutation potential) means that infection is likely to occur at an early stage in an individual’s life, perhaps even soon after sexual debut, and not necessarily result in illness until children have been conceived and born. Thus, in each individual infection, a host – woman or man – may remain alive long enough to reproduce and leave behind offspring who, if not infected at birth,7 can be infected in the future. Hence there is a pathological harmony between the viral and human life cycles. The full wave length of the HIV epidemic curve is probably up to 50 and perhaps 120 years long (Anderson 2000). Unlike most other infections, this passes from generation to generation and so the ‘normal’ epidemic sigmoid curve instead of merely reaching a peak, in the absence of marked changes to rates of transmission, receives an additional boost as each new generation becomes available for infection.

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Such pathological harmony between virus and host reproductive cycles has potentially significant social and economic results. And this is all the more the case when we consider that each succeeding generation is likely to be born into a higher HIV prevalent environment than its parents; the situation is exacerbated further as its orphan status – with sub-optimal socialization, early deprivation, poorer life chances – means that in all probability its likelihoods of contracting HIV is increased. Basia Zaba’s simulation of the life-time risk of infection among young women in a range of seroprevalent environments (UNAIDS 2000: 26) shows that in countries where adult seroprevalence is in the range 15–40 per cent, a young woman aged 15 has a 50–95 per cent chance of contracting HIV infection and dying of AIDS. Even at the relatively ‘low’ adult seroprevalence level of 5 per cent, a young woman’s lifetime risk of contracting HIV is around 20 per cent. The risk for young men is higher still. This has to be seen further against the declining life expectancy in countries with generalized AIDS epidemics. In several countries in southern Africa, after decades of improvement, life expectancy at birth has now declined from around 60 years to below 50 years and in some cases barely above 35 years (United Nations Department of Economic and Social Affairs 2000). Tragic as this is, more significant is what Alex de Waal (2003: 1–23) has described as ‘expectancy of adult life’. People who grow up in harsh circumstances and surrounded by premature death may soon become convinced of the inevitability of their own fate. The expectation that one may not live beyond 25 or 30 years no doubt alters one’s perspective on the future and whether there is one at all – and thus also on the present. In other words it dramatically discounts the returns on any investments, whether financial, business or personal. Why take out an insurance policy, why invest in land, why put money into your children’s education, why do anything but live for the present when there is every chance that you are either infected or will become infected? This is hardly a recipe for ‘behaviour change’ (on this see Barnett and Parkhurst 2005). The future may look very much like this to current orphans in many places where there is a generalized AIDS epidemic. And it is important always to consider that seroprevalence rates are not the same as AIDS epidemics – they are a peek into AIDS in the future. The worst is yet to come.

What does this do to human societies? The general situation with regard to the pathological harmony between pathogen and human society is outlined schematically in Figure 3.1. This illustrates the ways in which a generalized epidemic adversely affects the potential and actual capacity for a society and economy to reproduce itself in a variety of ways including via transmission of knowledge and education, through maintenance of social and cultural patterns and via the peopling

36 The Politics of AIDS

Increasing probability of infection Decreasing life expectancy Increasing possibility of acquired and transmitted viral resistance?

death and orphaning

1

20 Individual vireamia

death and orphaning

40 Epidemic curve

death and orphaning?

60

Year

Generation

Figure 3.1 HIV/AIDS: sundering the bonds of human society?

of institutions, whether government organs or community infrastructure in general. Figure 3.1 shows the following: 1. The resonance between the viral life cycle and the human generational cycle. Here we see that generation 1 reproduces itself and acts as a host for the HIV pathogen. As this generation dies it leaves orphans. 2. These orphans enter a world where the risk of infection with HIV has increased as the general epidemic curve rises. In addition, as orphans, this generation is also possibly more socially, culturally and economically exposed to infection. 3. Thus the pattern repeats itself; the second generation reproduces, but so also does the pathogen, and a third generation of orphans is produced. This generation faces an increased risk of infection for the same reasons as did its parents – but the risk is increased as general seroprevalence rises and social exposure to sexually transmitted infections (including HIV) also increases as a result of less adequate socialization, reflecting in part the decreased expectancy of adult life of the parent generation. 4. While ARV roll out increases national seroprevalence rates by keeping HIV+ people alive, it also reduces overall levels of viraemia in those who are HIV+ to below measurable levels. This is the good news; but in the background is the possibility of increased viral resistance to these medications as ARV roll out occurs under sub-optimal circumstances with poor

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d. Rakai parish level Age 65–69 60–64 55–59 50–54 45–49 40–44 35–39 30–34 25–29 20–24 15–19 10–14 5–9 0–4

Figure 3.2

100

50 Males

0

50 Females

100

The effect of HIV/AIDS on population in Rakai, Uganda, 1993

Source: Low-Beer et al. 1997: 553–7.

compliance (Paterson et al. 2000: 21–30) and inadequate health systems. We can only speculate about the significance of this development. So far experience is very limited (Mogae, F., President of the Republic of Botswana, 2005). In addition to these processes of disruption, epidemic-associated mortality affects the demographic structure of a society. These effects are not uniform and will vary from place to place. For some parts of Africa we have evidence of what has happened to population as a result of AIDS deaths. In heavily affected regions of Uganda the effects of AIDS could be observed in Rakai District as long ago as 1993 – reflected in the census data as shown in Figure 3.2. Figure 3.3 shows a simulation of Botswana’s population with and without AIDS mortality in 2020. Of course, initial population structure without AIDS will play a part in any outcome. For example, whereas the typical base structure in Africa and central Asia is characterized by high birth rate and relatively low life expectancy, producing a typical demographic triangle, in other regions, such as in Ukraine, Belarus and Russia, the base demographic picture is quite different as is the economic and political base. No doubt increased AIDS-related mortality will have different social and economic consequences as between these two regions (UNDP 2004; Sharp 2002). Thus generalization must be drawn with great care: an AIDS epidemic encounters pre-existing histories, cultures and social structures. Overgeneralization can all too easily lead to

38 The Politics of AIDS

Age in years

Projected population structure in 2020 80 75 70 MALES 65 60 55 50 45 40 35 30 25 20 15 10 5 0 140 120 100 80 60

Deficits due to AIDS

FEMALE

40

20

0

20

40

60

80 100 120 140

Population (thousands) Figure 3.3 Projected population structure with and without the AIDS epidemic, Botswana 2020 Source: US Bureau of Census, World Population Profile 2000.

hasty conclusions about state breakdown, security threats etc. In fact the long wave of the event, like any wave, crashes more or less intensely depending on the depth of the water. Some societies have deeper, calmer water than do others; they are richer, better organized, or in other respects more resilient.

Politics and governance effects With these provisos, we can however speculate as to the political and governance implications of HIV/AIDS epidemics. National strategic planners have been thinking about the likely security implications of the epidemic for some years – with more or less apocalyptic predictions. In the aftermath of 11 September 2001, some political analysts suggested that the projected 42 million children who will cumulatively have been orphaned by AIDS by the year 2010 are likely to be source of political and social unrest, even a source for terrorist recruitment ( Jensen 2004; Schönteich 2002; Fourie and Schönteich 2001: 35–6). In 2003, the Pretoria-based Institute for Security Studies predicted that the severe social and economic impact of HIV/AIDS, and the infiltration of the epidemic into the ruling political and military elites and middle classes of developing countries may intensify the struggle for political power to control scarce state resources. Such dynamics, even singularly, have

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the potential to lead to political instability. (Pharaoh and Schönteich, in Garrett 2005) Some of the more extreme predictions have come from within US administrations, thus: AIDS, other diseases, and health problems will hurt prospects for transition to democratic regimes as they undermine civil society, hamper the evolution of sound political and economic institutions, and intensify the struggle for power and resources. (National Intelligence Council 2005) This particular report concluded that the prospects for transition to democratic regimes were compromised by HIV/AIDS. It suggested that epidemic impacts may ‘serve to undermine civil society, hamper the evolution of sound political and economic institutions, and intensify the struggle for power and resources’ (National Intelligence Council, undated). And it was just such an assessment which prompted the then CIA Director George Tenet to state in February 2003 that: The national security dimensions of the virus are plain: It can undermine economic growth, exacerbate social tensions, diminish military preparedness, create huge social welfare costs, and further weaken already beleaguered states. And the virus respects no border. (Anderson 2003) All of this is crude and unsupported analysis. It is based on no evidence and little theory whatsoever and necessarily arrives at its conclusions through the prism of post 9/11 expectations of potential threats to the security of the USA. However, rather than rushing to premature conclusions as to ‘threats to national security’ or ‘state breakdown’ as a result of HIV/AIDS (rather than because of other factors) it is necessary to take a closer look at the processes and structures within AIDS affected countries to see what we may discern about an unclear future. Such a review should however be made in relation to the perspective on pathogen-host relations outlined above.

What do we know about politics, governance and AIDS? We have surprisingly little hard information about the effects of HIV/AIDS on governance and politics in even the most severely affected countries. One of the few solid pieces of indicative evidence and analysis is to be found in a 2004 report by Kondwani Chirambo. He makes the following observations about the influence of HIV/AIDS on politics in southern Africa. Noting the importance of elections as core mechanisms of any system claiming democratic credentials, he suggests that illness and death associated with HIV could already be affecting electoral systems in Southern Africa. Looking at data from Zambia’s 1991, 1996 and 2001 elections and from seroprevalence data

40 The Politics of AIDS

available since 1985, Chirambo provides perhaps the most convincing if only correlational analysis of the effect of AIDS on an electoral system. The study indicates that between 1964 and 1984 there were 14 by-elections as a result of the death of the incumbent member. This number increased to 59 during the period 1984 to 2003 – when the HIV epidemic first took off in that region. And we may want to note that in its earliest phases in Africa, HIV infections tended to cluster in wealthier, more mobile men rather than in other sections of the population – wealth, or at least higher spending power, which is not the same thing, and mobility being characteristic of politicians the world over. Of these 59 deaths, 39 occurred between 1993 and 2003 – the period of high HIV and AIDS prevalence. Of the 39 MPs who died in this time, 15 were in the age range 25–49 and 12 were between 50 and 60 years old. Only four were listed as having died from road accidents. Similar trends are observed in Zimbabwe; increased numbers of by-elections as a result of incumbents’ deaths due to illness. In the period between the 2000 parliamentary elections and 2004, Chirambo reports Zimbabwe as holding 14 by-elections. Eight of these were as a result of ‘illness’. The 2002 general elections in Lesotho cost R118 million. Since then, the country has already held six by-elections, three as a result of MPs dying of unspecified illnesses. AIDS seems a likely common factor. In the region’s core, South Africa, competing with India as the country with the largest number of HIV infections, a very serious conclusion might be drawn from this kind of analysis. Could it be that HIV and AIDS are eroding the South African electoral base and its supply of parliamentarians? Evidence for this supposition can be found in a recent publication (Strand et al. 2004) which suggests that increasing death rates in the voting age group could explain the downward trend in voter turnout over the last three elections in South Africa and may also be a contributor to political power shifts. Unusual levels of mortality among the electorate are reflected on the voters’ roll via the population register. This shows that between 1999 and 2003 almost 1.5 million of South Africa’s registered voters were removed from the voters’ roll because they had died. This out of a total of 20 674 926 registered voters. In the same time period the number of deaths among registered voters increased by 66 per cent. In some municipalities mortality increased by more than 300 per cent over the four years for women between 30 and 39 years of age. In Limpopo Province it increased by 160 per cent. Mortality in the age group 30 to 49 increased at a higher rate than in the other age groups. And the effects? Difficult to arrive at a sure conclusion, but it is reported that of the leading political parties in South Africa, the ANC and Inkatha Freedom Party (IFP) acknowledge HIV/AIDS as having put some strain on their party structures, creating increased need for replacement of cadres who have succumbed to illness or died. Although no severe ‘functional defects’ have arisen in the party structures, the loss of seniority and experience nevertheless is reported

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to have reduced parties’ capacities and ‘intellectual memory’ (Strand et al. 2004: 17). None of the above shows dramatic disruption, nor does it show failed state syndrome. But considered against the background provided above, it should give pause for thought. We must not forget that although the HIV epidemic is in its third decade, we are still not seeing the full and cumulative social and economic impacts of the elevated seroprevalence levels we now read and digest (if we do read them) with hardly a blink. Let me repeat them: 25 per cent, 30 per cent, 35 per cent, 40 per cent: these are not the impact of the epidemic, they are precursors to that impact. In that light we should think very carefully about whether the evidence from southern Africa also provides a hint of what lies ahead in terms of political and governance effects. Of course many worst case scenarios can be envisaged. For example differential seroprevalence rates between constituencies and even different allocations of ARVs could affect voting outcomes. There is certainly strong and current rumour from Zimbabwe that MDC (Movement for Democratic Change) members have less chance of accessing ARVs than do Mugabe supporters. Even in less than perfect democratic systems, more frequent elections – as recorded in parts of southern Africa, combined with a hollowed out electorate, as suggested for South Africa, means less experienced and less sophisticated electors and legislators. Declining adult life expectancy, increasing numbers of orphans, poorer socialization, second and third generation orphans, the orphans of orphans of orphans; all of these could constitute tipping points in already explosive local mixtures. What are the possible outcomes? The answer to this question lies not only in the internal operations of individual states but also in regional and global forces. A recent scenario exercise by UNAIDS and Royal Dutch Shell (2005) looked to understand African futures with HIV/AIDS. As with all scenarios and given normal distributions, there were three predictable outcomes (although some African participants evidently would have liked to include more): an optimistic, a pessimistic and a middle of the road. In the pessimistic, Africa goes down the tube and all the bad things currently going on are exacerbated by an out of control AIDS epidemic; in the middle scenario, ‘Africa goes it alone’ and manages to avoid the worst but the situation is bad, and mortality and suffering are high; in the best case, global assistance and African political leaders’ wisdom saves the continent from the worst, and while suffering (as we already know) dreadful effects, Africa is saved and saves itself from disaster. All too predictable, but of interest in relation to the questions we have posed about politics, governance and security. First of all, of course, there is no ‘African’ or any other political and governance effect of AIDS. There is likely to be a diversity of outcomes on that continent as elsewhere. As with the demographics, the starting point is important. Possibilities include failed state syndrome where hollowing out of effective democratic processes as currently found in South Africa, Botswana and a few other countries, leads to

42 The Politics of AIDS

disorder, regional secession, warlordism and the kinds of political developments already apparent in parts of the continent (and not only in Africa) without HIV/AIDS. Could the breakdown of intergenerational links and of political trust and systems lead to these effects in South Africa and Botswana? Well, the Prime Minister of the latter foresees serious possibilities. He is on record as saying: The impact of HIV/AIDS on the population, the economy, and the very fabric of our society undermines not only development, but poses a serious threat to our security and life as we know it. (Economic Commission on Africa, 2004) In South Africa, the government of President Mbeki seems to have left it until demands for AIDS treatment become such an urgent political issue they can produce violence. The evidence for this is the shooting with rubber bullets of ten people in Queenstown on 13 July 2005 (Treatment Action Campaign, 2005). These people were protesting for ARV treatment. In such circumstances, issues of trust between government and electorate, hollowing out of the electoral process and of the legislature, demands for AIDS treatment, external influences, and the long-term demographic and intergenerational breach effects described above could all come together to produce odd and unexpected political results. But perhaps not state breakdown in many cases – or at least not as a result of AIDS. Perhaps more likely among the possible responses is a form of authoritarian government – partly as defence of established interests, partly in response to an attempt to do something, partly because the last 50 years have stamped authoritarianism into the political culture of much of sub-Saharan Africa. The middle UNAIDS scenario comes out with something like this. A recent revealing visit to a small African community where AIDS deaths were familiar in the early 1980s and where we are now seeing the second and third generations of orphans may show a particular possibility. The parish council chairman is in his early thirties. An orphan at seven, he brought himself and his younger siblings up together with one older brother. He is a serious man and he has a mission. He makes it his responsibility to stop the present generation of young people from becoming infected. If he finds them working in bars or as fishermen he takes action to compel them back to school. Not much room for ‘human rights’ based approaches here but probably good public health nonetheless! According to him this is an effective strategy. And who can condemn him for these actions when between 70 and 90 per cent of children in the local schools are orphans? In a society where candidates for political office are being winnowed by the epidemic, how many, like this man, might enter local and national politics with commendable intentions and will, but take actions which would produce despair in most human rights activists? What if the survivors of this

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epidemic, the orphans or orphans of orphans are indeed the main actors on the future national stage? What if they enter it with desperate aims to achieve something to deal with the dreadful effects of this epidemic? What if state structures are so weakened by the epidemic? What if millenarian and syncretistic religious ideologies gain ground?8 And a dozen other ‘what ifs’. Among these and crucial to future thinking are two questions: (a) whether or not sustainable ARV treatment can be made available over the long term and (b) whether the next generation of such drugs able to confront viral resistance can be made readily and cheaply available rather than be subject to lengthy bargaining to achieve this necessary end. While the label ‘fascist’ may seem odd, Karl Polanyi’s (2000: 245) description of the harbinger ideas of fascism seems somehow apposite to describe aspects of this possibility. They include: ‘spread of irrationalistic philosophies, racialist aesthetics, anticapitalist demagogy, heterodox currency views, criticism of the party system, widespread disparagement of ‘regime’ or whatever was the name given to the existing democratic set up’. Poor countries are not immune to fascism and the BJP movement and its incumbency in government in India certainly trod a narrow line in this respect (see Corbridge and Harriss 2000). Fascism can be built on the basis of diverse ideological and cultural traditions. But probably as important in all of this is not what happens within a country as a result of HIV – which in most cases will be only a tipping point factor. Rather it is the stance of the external world to those countries with serious current HIV epidemics and looming AIDS epidemics. It is with these long wave events that we must all engage strategically. This is the real security issue. ‘Security’ in a globalized world is more than the defence of a ‘homeland’. Suggestions either that AIDS is a threat to ‘national security’ or that it necessarily leads to political and governance problems are facile and may be self-fulfilling. We can speculate but we just do not have the evidence on this, either way, for sub-Saharan African countries or anywhere else for that matter. Such simple-minded perspectives may move national security organs. They fail to engage with the key problem of the twenty-first century: living together on one small, diverse and increasingly crowded planetary homeland. Grasping the real nature of the HIV/AIDS long wave and finding meaningful data are necessary ways toward assessing what all of this means.

Notes 1. This is a slightly amended version of a paper originally published in International Affairs 82(2): 931–52, March 2006. It is reproduced here with kind permission of the publishers and Chatham House. My thanks to the following for most useful and informed comments on an earlier draft: Colette Clement, Sarah Knights, Bill Rau, Janet Seeley. 2. I am grateful to Dr Roland Msiska for this insight derived from his long-term observation of a group of street children in Lusaka.

44 The Politics of AIDS 3. It is odd that these authors speak about these changes in the future tense when the epidemic is already so old. 4. Demographic and Health Surveys (DHS) have run seroprevalence studies in various places using different methods from UNAIDS and the US Bureau of the Census from whence UNAIDS obtains most of its statistics. Their estimates of prevalence have tended to be lower than those reported by UNAIDS. 5. Median survival from seroconversion 8.6 years (95%CI 5.6 ->12 years) as reported by Whitworth et al. 2003. 6. An epidemic is a rate of disease that reaches unexpectedly high levels, affecting a large number of people in a relatively short time. Whether and how an epidemic develops is linked to the reproductive rate of the pathogen. The gradient, final height and rate of decline of the curve is determined by the average number of secondary cases generated by one primary case in a susceptible population and the period over which this takes place. This is also known as ‘the basic reproductive number’ and represented by the symbol R0 (Anderson and May 1992). In order for an epidemic to be maintained, R0 has to equal 1, in other words each person who gets better or dies has to infect one other person. At this point the disease is endemic but stable. When R0 > 1, each person infects more than one other person, the number of cases will rise. When R0 < 1, then the epidemic will be disappearing. The reproductive rate is the number of secondary cases resulting from each primary case. Where this is 0 or <1 the infection does not become epidemic. Where it is >1 epidemic development is likely. The larger the R0 number, the steeper the epidemic curve. 7. Of children born to HIV+ mothers, about 25% are HIV+ after the first two years and are actually carrying the virus rather than antibodies to it. 8. The role of syncretist African Zionist churches in Southern Africa in relation to the HIV epidemic is an important area for further research.

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Chirambo, K. (2004), AIDS and Electoral Democracy: Applying a New Lens To Election Coverage, IDASA Institute for Democracy in Southern Africa, June. Corbridge, S. and Harriss, J. (2000), Reinventing India: Liberalization, Hindu Nationalism and Popular Democracy. Cambridge: Polity Press. Daniel, M. (2005), ‘Hidden Wounds and Lost Dreams: Orphanhood, Exigency and the Culture of Silence in Botswana’. Ph.D. thesis, University of East Anglia, Norwich. de Waal, A. (2003), ‘How will HIV/AIDS transform African governance?’ African Affairs, 102: 1–23. Economic Commission on Africa (2004), Statement by H.E. Festus G. Mogae, President of Botswana. http://www.uneca.org/adf2000/daily_updates/speeches_and_press_ releases/120700stat Fourie, P. and Schönteich, M. (2001), ‘Africa’s New Security Threat: HIV/AIDS and Human Security in Southern Africa’, African Security Review, 10(4). Garrett, L. (2005), HIV and National Security: Where Are the Links?. US Council on Foreign Relations 18 July. Germann, S. (2004), ‘Call to Action: What do we do?’, Chapter 5 in Pharoah, R. (ed.) A Generation At Risk? HIV/AIDS, Vulnerable Children and Security In Southern Africa. Institute For Security Studies, Pretoria. Monograph No 109. Jensen, S.L.B. (2004), Fatal Years: How HIV/AIDS is Impacting National and International Security – A Desk Review of the Literature and Analytical Approaches. Geneva: UNAIDS Security and Humanitarian Response Unit, March–April. Joint Science Academies’ Statement (undated), Global Response to Climate Change. http://www.royalsoc.ac.uk/displaypagedoc.asp?id=13057. Little, S.J., Holte, S., Routy, J.P. et al. (2002), ‘Antiretroviral-Drug Resistance among Patients Recently Infected with HIV’, New England Journal of Medicine, 347: 385–94. Low-Beer, D., Stoneburner, R.L. and Mukulu, A. (1997), ‘Empirical Evidence for the Severe but Localised Impact of AIDS on Population Structure’, Nature Medicine, 3 (5): 553–7. Mogae, Festus G., President of the Republic of Botswana (2005), Speech at the opening session of the International AIDS Society Conference on HIV Pathogenesis and Treatment, Rio De Janeiro, Brazil, 24–27 July 2005, released Sunday 24 July 2005. National Intelligence Council (2005), Global Trends 2015: a Dialogue about the Future with Non-Government Experts. http://www.cia.gov/cia/reports/globaltrends2015/ National Research Council (2001), Climate Change Science: An Analysis of Some Key Questions, Committee on the Science of Climate Change. National Research Council, Washington DC. O’Rourke, M. (2005), A Single Case of Multidrug-Resistant HIV and Rapid Disease Progression, AIDS Clinical Care. http://aids-clinical-care.jwatch.org/cgi/content/full/ 2005/0301/1 Paterson, D.L., Swindells, S., Mohr, J. et al. (2000), ‘Adherence to Protease Inhibitor Therapy and Outcomes in Patients with HIV Infection’, Annals of Internal Medicine, 133(1): 21–30. Polanyi, K. (2000), The Great Transformation. Boston: Beacon Press. Pharaoh, R. and Schönteich, M. (2003), AIDS, Security, and Governance in Southern Africa: Exploring the Impact. Occasional Paper No. 65, Institute for Security Studies, Pretoria, cited in Garrett, op. cit. Samura, S. (2005), Living with AIDS, Channel 4 Television (UK), 27 June. Schönteich, M. (2002), ‘The Impact of Communicable Disease on Violent Conflict and International Security’. Presentation at the Demographic Association of Southern

46 The Politics of AIDS Africa Annual Workshop and Conference, University of the Western Cape, 24–27 September. Sharp, S. (2002), ‘Modelling the Macroeconomic Implications of a Generalised AIDS Epidemic in the Russian Federation’, Master’s Thesis, Department of Economics, University of Colorado, Boulder. Smith, S.M. (2005), ‘New York City HIV Superbug: Fear or Fear Not?’ Retrovirology, 2 (14), http://www.retrovirology.com/content/2/1/14 Strand, P., Matlosa, K., Strode, A. and Chirambo, K. (2004), HIV/AIDS and Democratic Governance in South Africa: Illustrating the Impact on Electoral Processes. Pretoria: IDASA. The Nation (Thailand), 15 July 2005. Treatment Action Campaign Newsletter (2005), Forty Injured, Ten Shot at Peaceful Protest to Demand Treatment. 13 July, Cape Town, various sources including: http://outfm.org/News/20050712%20tac%20activist%20shot.html UK Group on Transmitted HIV Drug Resistance (2005), ‘Trends in Primary Resistance to HIV Drugs in the United Kingdom: Multicentre Observational Study’, British Medical Journal, November: 1–6. UNAIDS (2000), Epidemic Update: 2005. Geneva: UNAIDS. UNAIDS (2004), India: Epidemiological Fact Sheet, Update 2004. Geneva: UNAIDS. UNAIDS and Royal Dutch Shell (2005), AIDS in Africa: Three Scenarios to 2025. Geneva: UNAIDS. http://www.unaids.org/en/AIDS+in+Africa_Three+scenarios +to+2025.asp UNAIDS/UNICEF/USAID (2004), Children on the Brink 2004: A Joint Report of New Orphan Estimates and a Framework for Action. New York: UNICEF. UNDESA, Population Divisions (2000), World Population Prospects: 2000 Revision. New York: United Nations Department of Economic and Social Affairs. UNDP (2004), HIV/AIDS in Eastern Europe and the Commonwealth of Independent States: Reversing the Epidemic – Facts and Policy Options. Bratislava, New York and Moscow: UNDP. US Bureau of Census, International database accessed November 2007: http://www. census.gov/ipc/www/idb/pyramids.html. Wainberg, M.A. (2004), ‘The Emergence of HIV Resistance and New Antiretrovirals: Are we Winning?’, Drug Resistance Updates, 7: 163–7. Whitworth, J., Shafer, L.A., Mahe, C. and Van der Paal, L. (2003), ‘Survival since Onset of HIV Infection in Relation to Background Mortality in the Masaka Natural History Cohort’, at Empirical Evidence for the Demographic and Socio-Economic Impact of AIDS conference, Durban, March.

Part 2 AIDS and the African State in the Context of Globalization

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4 AIDS and the future of the African State Nana K. Poku

Introduction1 ‘Seek ye first political kingdom and all else will follow.’ This was the optimistic proclamation of Kwame Nkrumah, the founding father of Ghana, at independence. Sixty years and seventy-two African coups later it has become painfully clear that ‘all else’ does not follow. In the intervening years, the aura of vigour surrounding the ‘political kingdom’ has faded, while the debilitating effects of its underlying fissures assume new realities. Across the continent, states preside over fractured societies with multiplicity of ethnic identities and divergent interests making it particularly difficult for governments to generate a legitimate basis for governance. In the process, ordinary people lurch between an alien superstructure (the western/colonial state) and a decaying traditional African past; their loyalties stretched between predatory elites and disintegrating tribal systems as many ordinary citizens head to the melting pots of ever expanding cities. Meanwhile the perverters of the ‘political kingdom’, Africa’s Big Men and their external allies, find innovative ways of plundering the wealth of the land and its people. The resulting societal decay presents a dramatic image of insecurity of ordinary people in circumstances where state managers – both domestic and international – are either unable to provide protection or are themselves the principal sources of brutality. Unsurprisingly, many states on the continent are weak and much of their enduring force derives more from the feebleness of potential challengers, than from inherent capabilities of the state itself. Against this background, the HIV/AIDS epidemic is corroding state structures through its impacts on vital human capacity. The net effect of the process is a further weakening of state structures and social networks. These are already under pressure from poverty and sundry other concomitant variables. The process is insidious with profound implications not only for the structure of families and the survival of communities, but also for the constitution of economies and, in the extreme, the very survival of certain states. 49

50 The Politics of AIDS

This chapter examines the impacts of HIV/AIDS on the African state. Much is already known about the social consequences of HIV/AIDS (Poku 2006, Poku et al. 2007a, Barnett and Whiteside 2006). There are significant gaps, however, in what we know about the implications of the epidemic for state consolidation on a continent where states are already notoriously weak. African countries now have to respond to the ravages of HIV/AIDS from a seriously weakened financial, human, institutional, and organizational base. This raises the question of how states already fragile from years of political and economic failures can continue to function amid HIV prevalence as high as 10, 20, 30 and higher percentages among their economically active populations. It is, however, with the issue of Africa’s weak states that I begin my analysis.

In context: the African state In Leviathan, Thomas Hobbes described the nature of the state as a form of institution – as he puts it, an ‘Artificial Man’, defined by prominence and sovereignty, the authorized representative giving life and motion to society and the body politic. Crucially, Hobbes argues for a form of social contract between the state and citizenry (Hobbes Chapter XIII). In this contract citizens confer on the state the right to control a definable territorial space and, in the process, the right to make and enforce such rules or laws as is deemed necessary in exchange for political, economic and military security. However mythical this proposition might sound, either for the imposition of minimal order or co-operative communal benefits, people have ceded to a central organ a monopoly of political authority and power. Reinforced by nineteenth and twentieth-century concepts of ideology and nationalism, the state system has now become the most prominent unit of political organization in the world; an organization to which millions of people owe allegiance and for which many are prepared to die. The African state is unique. Unlike elsewhere in the world where nationbuilders sought to replace the older empires with states comprising some combination of cultural, linguistic and patriotic unity, the African state emerged from the authoritarian structures of its colonial past. It was an outcome of a perverse divide and rule strategy pursued in the later parts of the eighteenth century by the leading nations of Western Europe. To the colonizers (as they called themselves) the strategy was simple; whenever they occupied a piece of land they could legitimately integrate that territory into their empire. This extension of the European notion of sovereignty brought with it a near total compartmentalization of political space in which there were very few uncolonized areas on the continent. Only 10 per cent of the continent was under direct European control in 1870, but by the end of the century only 10 per cent remained outside it.

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As late as 1951, a British historian wrote (cited in Wallerstein 2005: 11): ‘until the very recent penetration by Europe the greater part of the African continent was without the wheel, the plough and the transport animal, almost without stone houses or clothes except for skins; without writing and so without history.’ This image has remained the dominant subtext to much of the modern presentations of the continent. The vast area appears to be cited in order to stress its transience or even decrepitude; as if some curse of dubious scientific basis had been laid on political analysis of the whole continent. Yet the true history of Africa is rich with variety and invention as well as in tradition, culture and government. It is a history at least as old as that of Europe; at least as interesting if less known; and some would argue as impressive. The destruction brought by the colonial period was so total as to leave very little for modern historians to judge how African societies functioned before the arrival of Europeans. But we know it was neither always anarchic nor barbaric. It seemed to have been characterized by movement and splendour, conquest and innovation, trade and art. We have heard about the pyramids not in Egypt, but Sudan which predate the former by at least a century. The Great Zimbabwe ruins in southern Africa provide another example of advancements of civilizations in many parts of Africa. Using local granite, the Zimbabweans constructed a complex building 300 feet long and 220 feet wide, whose walls were 20 feet thick and 30 feet tall – this was around the thirteenth century when comparable societies were still in the ‘dark ages’. We might know more today about the sophistication of this civilization if the British South Africa Company had not given a concession to a prospector in 1895 to exploit the ruins. By the time he was stopped in 1902 the copper and gold objects that formed an integral part of the buildings had been extracted by force at the price of near total destruction of the ruins. Along with it went about a thousand years of history, which has been virtually impossible to reconstruct. By 1914 the political map of Africa was virtually complete. The resulting pattern containing comparable administrative units and clearly defined boundaries for which there was neither extension nor overlap. Each unit functioned on the conviction that the administrators were sovereign; that their subjects neither understood nor wanted self-government. This was later to prove the ‘Achilles heel’ of the African state. What Nkrumah and his compatriots inherited at independence were the authoritarian structures of the colonial state, an accompanying political culture, and an environment of politically relevant circumstances tied heavily to the nature of colonial rule. Imperial rule from the beginning expropriated political power. Unconcerned with the needs and wishes of the indigenous population, the colonial powers created governing structures primarily intended to control the territorial population, to implement exploitation of natural resources, and to maintain themselves and the European population.

52 The Politics of AIDS

It follows, therefore, that although independence brought an extraordinary opportunity to establish a new social contract to underwrite the state, in reality it was severely flawed. Future indigenous leaders, continuously exposed to the environment of authoritarian control, were accustomed to government justified on the basis of force. The idea that government was above self-interested political activity (which only served to subvert the public’s welfare) was communicated by colonial administrators. As a result, notions that authoritarianism was an appropriate mode of rule were part of the colonial political legacy. Indeed, such were the ambiguities in which rulers and the ruled were involved and of which they were generally only vaguely, if at all, aware. It would, however, be a mistake to blame everything on colonialism. Indeed, it should not serve to detract attention from the obvious failings of the political elite. State effectiveness has continually waned in Africa, because of ongoing parochialization of the public realm. In particular, resources allocation has typically come to follow ethnic or religious lines. While this is, in part, a function of the way the state was created, its use by postcolonial elites has created a skewed distribution of resources in favour of those groups that have power and wealth. In lamenting the African condition, Claude Ake (1987) concludes that African elites are responsible for ‘a pervasive alienation, the delinking of leaders from followers, a weak sense of national identity and the perception of the government as a hostile force’. The segmentation of society that has followed has impeded the many reforms of the political structures that possibly could enhance the consolidation of the African states. Instead, the parochialization of the political realm has played a central role in institutionalizing corruption. Owing to an absence of effective structures with autonomy and strength to check corruption, the governing elite of most African states have engaged in high and sometimes egregious levels of corruption, increasingly diverting states’ resources for personal gains. In countries such as Nigeria, Sierra Leone, Democratic Republic of Congo, the Central African Republic, and Zimbabwe, corruption is so extensive that it is viewed as a way of life. Making or receiving bribes is considered a practical method for supplementing ones income and achieving economic security far in excess of individual ability. An unpublished report from the UN into corruption in 15 African countries suggests that nearly 50 per cent of annual government budgets are misappropriated by corrupt governing elite. Much of the current analysis of the African State examines its functional capacities. Jeffrey Herbst (2000), who has written the very best book on the subject, discusses major functions of the state, of which a number of particular significance can be highlighted, including taxation, security, and economic development, among others. Although data are incomplete and state performances often vary widely, African states depend heavily on taxes on foreign trade (tariffs) and transactions for state revenue – nearly 40 per cent of revenue or more than twice the levels of other low and middle income

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areas of Asia and the Americas. On the other hand, domestic producer taxes (income, profits, capital gains) have been declining to less than 25 per cent and consumer taxes (sales, value added, excise) follow the same pattern. The gap is made up by foreign aid, borrowing and deficit financing, all areas in which the African state excels. As a result, state resources are low, against the high needs of development. Security is also below needs; many African states are not able to claim the Hobbesian legitimate monopoly of force, both because the ostensible monopoly and its legitimacy are contested. As a result of colonial legacy of artificiality, there are large areas where security is challenged by both rebellion and internal lawlessness. In many of these cases, rebel forces contest the legitimacy as well as the effectiveness of state security forces. William Zartman notes how there are large areas where security is challenged by both rebellion and internal lawlessness in Senegal, Guinea-Bissau, Liberia, Ivory Coast, Ghana, Nigeria, Chad, Sudan, Ethiopia, Somalia, Kenya, Uganda, Rwanda, Burundi, Congo (DRC), Angola, Zimbabwe, South Africa, and perhaps others – a list that includes all of Africa’s largest states (Zartman 2007). As a result, states have often had to form compromising (and often flawed) alliances to augment their own meagre capabilities. This includes reaching to militias, such as the Jeunes Patriotes in Ivory Coast or the Kamajors and Civil Defense Forces in Sierra Leone, Ninjas in Congo-Brazzaville, Janjaweed in Sudan, Civil Defense Forces in Zimbabwe and AlIR in Congo who serve as ‘official rebel armies’ to enforce partisan security and impose their own law and disorder. More officially, states opt to farm out security to private and public mercenaries at great cost to their own functional legitimacy (Reno 1999). It is, however, the failure to develop vibrant economies that most accounts for the continent’s weak states. Many of the problems of government derive from the fact that the economic base on which it is constructed is, and always has been, very weak. The attempt to create a strong state capable of achieving the Hobbesian ideal has therefore been stopped in its tracks by the inadequacy of the resources available for the purpose – an inadequacy which has only been exacerbated by the counterproductive effects of policies designed to increase elite access to their countries’ economic resources. Zaire under the authoritarian rule of Mobuto Sese Seko Kuku wa za Banga is a case in point and of whom Young and Turner (1985: 15) wrote the following: ‘corruption has become the system; it is a system by which the powerful exploit the less powerful, who in turn exploit the powerless.’ Indeed, so insidious was corruption under Mobuto that it coined a new polysyllabic term for political scientists: kleptocracy. ‘It’s like termites nibbling away at the structures of a society’, said a Belgian diplomat on his return from Zaire in 1979. The standard of living of state employees has in consequence steadily declined since independence, making mockery of the claims of power and privilege associated with Nkrumah’s ‘political kingdom’. This decline has been most dramatic among those who are least capable of exercising the

54 The Politics of AIDS

power required to divert an increasing proportion of the state’s declining revenues in their own direction – the poor. One implication of this trend is that approximately half the total population of the continent is actually poorer in 2006 than they were in 1990. With one-fifth of the world population, the continent is home to one in three poor persons in the world and four of every ten of its inhabitants live in what the World Bank classifies as ‘a condition of absolute poverty’. Nearly half the population of the continent (300 million people) lives on less than $1 a day: if current trends continue, by 2015 Africa will account for 50 per cent of the poor of the developing world (up from 25 per cent in 1990). Many other functions could be examined. They would, however, bear the same message; namely that the African state is weak and much of its enduring force derives more from the feebleness of potential challengers and external support, than from inherent capabilities of the state itself.

The impress of AIDS Africa’s weak states now have to contend with the ravages of HIV/AIDS. From an initial prevailing view that HIV/AIDS was not an important development issue, the world has now come to a consensus that HIV/AIDS is a disaster of biblical proportions. Estimates made in 1991 predicted that in sub-Saharan Africa nine million people would be infected with HIV and five million would have died of the disease by the end of that decade. Unfortunately, the epidemic was far more powerful than expected and three times as many people were infected and had died than had been initially estimated. Following an initial stage during which HIV spread throughout the population, the epidemic has now reached a more mature stage characterized by large numbers of people living with HIV/AIDS. As shown by Figure 4.1, the rate of increase seems to be slowing down, but this is occurring mainly because the increase in infections is being accompanied by rising mortality. Infection is concentrated in the socially and economically productive groups aged 15–45, with slightly more women infected than men. It is estimated that 24 million persons have died from HIV-related illnesses since the start of the epidemic worldwide, of whom more than 20 million were Africans (CHGA 2005a). It follows that the cumulative affected population in sub-Saharan Africa, taking into account spouses, children and elderly dependants, must be of the order of 250 million (29 million currently living with HIV plus 20 million who have died times a factor of 5 to represent those directly affected). This is a staggering proportion of the total population in sub-Saharan Africa – something like one-third of Africans are directly affected by the HIV epidemic. Few people can remain unaffected in indirect ways, i.e. through the illness and death of relatives, friends and in their workplaces and their communities.

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35 30

Million

25 20 15 10 5 0 1985 Figure 4.1

1989

1993

1997

2001

2005

2009

2013

2016

2020

Number of people living with HIV/AIDS, sub-Saharan Africa

Source: Projected by author using data from United Nations (2006).

Table 4.1 Levels of HIV prevalence in selected populations, end 2005 Country

Angola Botswana DRC Lesotho Malawi Mozambique Namibia South Africa Swaziland Tanzania Zambia Zimbabwe SADC SSA

Adults and children

Adults (15–49)

Women (15–49)

Adults (15–49) rate %

320 000 270 000 1 000 000 270 000 940 000 1 800 000 230 000 5 500 000 170 000 1 400 000 1 200 000 2 300 000 14 790 000 24 500 000

280 000 260 000 890 000 250 000 850 000 1 600 000 210 000 5 300 000 150 000 1 300 000 1 000 000 2 000 000 13 654 000 22 400 000

170 000 140 000 520 000 150 000 500 000 960 000 130 000 3 100 000 120 000 710 000 570 000 890 000 7 961 000 13 200 000

3.7 24.1 3.2 23.2 14.1 15.1 19.6 18.8 33.4 6.5 17.0 20.1 10.1* 6.1

*Calculated by author using UN Population Division estimates. Source: United Nations (2006).

The levels of HIV prevalence in parts of Southern Africa are extremely high: as can be seen from Table 4.1 there are increasing numbers of countries in the region with HIV infection rates among adults in excess of 15 per cent. The adult rate of HIV prevalence in the Southern African Development

56 The Politics of AIDS

Community (SADC) is 13.7 per cent compared with 7 per cent for sub-Saharan Africa as a whole (CHGA 2005b). No less than 15 million adults and children are currently infected with HIV in Southern Africa, accounting for 51 per cent of all infections in Africa (equal to 37 per cent of the global total of those living with HIV). While overall HIV prevalence rates are extremely high it is still the case that there is considerable variance – with a range from approximately 3.7 per cent in Angola and DRC to over 30 per cent in Swaziland (CHGA 2004b). It is unclear how far the variance in HIV data reflects the comparability of data between countries, since there is clearly a gap between countries in the quality of their seroprevalence surveys, or whether this reflects simply the timing of countries with respect to their experience of epidemic processes. It is likely to be a mixture of factors, as well as others, and this needs to be borne in mind when making cross-country comparisons. What stands out from Table 4.1 is the very high levels of HIV prevalence in general, and that on the basis of past experience it would appear likely that countries with relatively low current rates of HIV will follow the path of other countries in the region unless effective policies and programmes are implemented. There is only very limited evidence that sexual and other behaviours are changing within countries in the region, although there is some evidence for example from Uganda of declining incidence of HIV among young urban and rural women. In general what is notable for the region as a whole is the high level of prevalence. The gap between rural and urban HIV rates – previously substantial – is now narrowing rapidly in many countries. For some urban populations HIV is now as high as 40–50 per cent, rates of infection earlier considered wholly improbable. For example, in Botswana HIV prevalence in the capital city, Gaborone, has risen from 15 per cent in 1992 to 39 per cent in 2005 (CHGA 2005b). In the case of Francistown the prevalence was estimated at 43 per cent in 1998, and 10 of the country’s 15 sentinel sites now have HIV rates in excess of 33 per cent. The overall HIV prevalence rate for the adult population in 2006 was 39 per cent, making Botswana the country with the highest level of infection of any country. It is now projected that over the next 10 years, Botswana will lose a quarter or thereabouts of its total population to AIDS. This is in a country which has done remarkably well since independence and one where there has been sustained social and economic development. But it is still a country where about half the population lives in poverty, concentrated particularly among female-headed households. One of the key characteristics of the epidemic is the long time period between when a person becomes infected with the virus and the onset of AIDS and its various symptoms. That time period ranges from 5 to 10 years in most individuals. To simply look at the number of reported AIDS cases is to grossly underestimate the number of people infected with HIV – a mistake with deep consequences for countries. For both individuals and leaders, this ‘long wave event’, as Whiteside and Barnett have called it, makes it

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difficult to generate concern and to invest in effective interventions. Unfortunately, even if the pandemic were halted today, given the current number of people living with HIV/AIDS and those people already affected by the disease, the long-term impacts and consequences will become worse in the next two decades – and beyond (Barnett and Whiteside 2006). In the absence of HIV/AIDS, the population group aged 15–49 accounts for about 20 per cent of all deaths. But with AIDS the mortality rate of the adult population increases sharply. How much the mortality rate increases has been a subject of considerable debate in Africa due to the lack of adequate statistics on the causes of death. In the absence of such data one is forced to turn to two alternative methods. The first one is to project the AIDS-related increase in mortality on the basis of a mathematical modelling of the epidemic. Applying this approach to SSA countries suggests that HIV-related deaths represented 30 per cent of all deaths during the period 1996–2002 (Bradshaw et al. 2003). An alternative method is to estimate the increase in mortality directly from the excess deaths that can be attributable to AIDS. In the case of South Africa, this method indicates that about 27 per cent of the deaths recently observed in South Africa were HIV-related, which is quite consistent with the first approach (Groenewald et al. 2005). The reason why HIV/AIDS has such an impact on mortality can be understood from the typical characteristics of the HIV epidemic. In a typical African country the adult mortality was around 7 per 1000 before the advent of HIV/AIDS. A stable 7 per cent HIV prevalence rate (average for sub-Saharan Africa) would therefore increase the death rate of the whole population by about 20 per cent.2 For the more heavily infected countries with an HIV prevalence rate of 20 per cent, the increase would be much larger of the order of 80 per cent.3 The growing number of HIV/AIDS-related illnesses and deaths in society is affecting achievements in reducing death rates. Estimates made earlier in the epidemic’s history projected some slowing of population growth rates. However, as the epidemic has become more intense and extensive, we are seeing hard hit countries experiencing great loss of population, as more people die than are being born. Figure 4.2 is taken from the United Nations Commission on HIV/AIDS and Governance in Africa (United Nations 2007), according to their projections, by 2010, the population of Botswana, South Africa and Zimbabwe will decline by about 1 per cent per year. Without AIDS, the population would have grown by between 1.0 and 2.0 per cent in these countries (Stanecki 2004: 2). AIDS-related deaths are occurring especially among young and middle-aged adults, between the ages of 24 and 50. Women tend to die in the younger age brackets (20–35 years old) while men tend to die in the older age brackets (30–45 years old). Infants, too, are dying at an increasing rate because they acquire HIV/AIDS before they are born or shortly thereafter. In 1990 infant mortality in Zimbabwe was 54; in 2000 the rate had risen to 62.

58 The Politics of AIDS

Botswana Zimbabwe South Africa

%

3.5 3 2.5 2 1.5 1 0.5 0 ⫺0.5 ⫺1

Zambia Lesotho Namibia 2045–2050

2040–2045

2035–2040

2030–2035

2025–2030

2020–2025

2015–2020

2010–2015

2005–2010

2000–2005

1995–2000

1990–1995

Swaziland

Figure 4.2 Population growth rates for selected Southern African countries Source: United Nations (2007).

70 65 60

Botswana

55 South Africa

50 45

Zimbabwe

40

Kenya

35

Central African Republic

30 1985-90

1990-95

1995-2000

2000-05

2005-10

Figure 4.3 Changes in life expectancy of selected African countries Source: author using data from United Nations (2007).

In Kenya, infant mortality in 1990 was 67, in 2000 it was 69. Without AIDS infant mortality would have continued to decline in both countries (Stanecki 2004: 4). As infants and young adults die at increasing rates, overall life expectancy is dramatically declining. As of 2002, life expectancy in Botswana was less than half it would have been without AIDS. Figure 4.3 dramatizes the impacts of HIV/AIDS on life expectancy using data from United Nations (2007). In the case of Zimbabwe, life expectancy is now under 35 years instead of 69 as it would have been in the absence of AIDS. Seven sub-Saharan African countries (Angola, Botswana, Lesotho, Malawi, Mozambique, Rwanda, and Zambia) have life expectancies below 40 years. Each of the countries, except

HIV prevalence %

Nana K. Poku

20 18 16 14 12 10 8 6 4 2 0

59

18 Men Women 11.2

5 3

Zambia

Zimbabwe

Figure 4.4 HIV prevalence among women and men aged 15–24, Zambia and Zimbabwe Source: WHO-AFRO (2006).

for Angola and Mozambique, would have had an estimated life expectancy of 50 years or more without AIDS. The epidemic is restructuring the population. Age distribution in societies is changing dramatically, with fewer infants, young children and young adults than would be the case without HIV/AIDS. The implications are several. Fewer children mean a smaller pool of future human resources to take part in national development. Older adults will be proportionally more numerous and will have to take on new responsibilities to care for children and generate income. There will be fewer young and middle-aged adults to provide income and raise families. Families, businesses and nations will have a smaller number of adults to count on for leadership and management. For biological, cultural and socio-economic reasons, women are at higher risk of HIV/AIDS infection than men (Figure 4.4). Nearly 60 per cent of all people living with HIV/AIDS in sub-Saharan Africa are women. An even greater gender bias exists against young women, between the ages of 15 and 24. In that age group, over three-quarters of people living with HIV/AIDS are women (UNAIDS/WHO 2006). A study in the Kenya city of Kisumu found the HIV prevalence rate to be much higher among women in the 15 to 49 year age group – 31 per cent among women and just under 20 per cent among men (Buve et al. 2001). The gender differences were greatest in the 15–19 age group (23 versus 3.5 per cent infection rates for young women and young men, respectively). Elsewhere, where sexual relations tend to start later, the highest rates tend to be among women 20–30 years of age. Not only are women more likely to become infected, but they are more heavily affected by HIV/AIDS. Their income status is likely to fall if an adult male losses his job and dies as a result of HIV/AIDS. Women may have to

60 The Politics of AIDS

give up some of their income-generating activities or schooling to care for sick relatives. A study in eastern Zimbabwe, for example, found that only one-third of the widows of men who had been employed received a widow’s pension and fewer than 2 per cent of affected households received help with school fees, housing costs or subsistence from the social welfare services (Gregson et al. 2004: 9). As a result of these disparities in HIV infection rates, it is projected that by 2020, there will be more men than women in each age range between 15 and 44. The implications are unclear, but it may mean that men will seek younger and younger female partners. ‘This factor in turn may increase HIV infection rates among younger women’ (Stanecki 2004). Increased competition among men for female partners may result in increased violence. Or, it may provide women with greater control over selection of partners. Early in the epidemic, men with regular incomes and more education tended to have higher prevalence rates than others (Ainsworth and Semali 1998). However, once the epidemic became firmly established, prevalence began to follow prevailing fractures in the socio-economic structures of countries. Increasingly, young women, especially those who are living in poverty, and groups with less access to information and educational opportunities, are becoming infected at higher rates than young men. Married women whose husbands have more than one sex partner are at risk. HIV/AIDS can be described primarily as a disease growing out of poverty conditions, and class and gender inequalities. Children are increasingly more vulnerable because of the impacts of HIV/AIDS. New phenomena are occurring: a large number of orphaned children who cannot be easily or readily cared for through family relations; a growing number of child-headed households in which an older sibling cares for younger children. In 1990, an estimated 841 000 children in sub-Saharan Africa had been orphaned as a result of one or both parents dying due to AIDS; by 2003, the number was over 12 million – a 13-fold increase in just over one decade (UNAIDS, UNICEF and USAID 2004). More than 600 000 African infants become infected with HIV each year. They are infected before birth or shortly afterwards. Without appropriate drug treatment, the vast majority of these children live only a short time, usually less than three years. Currently, about 1 million infants and very young children are living with HIV/AIDS. Even when the children are protected from HIV infection, their mother and/or father is unlikely to receive effective treatment and be able to survive. The death of a parent will leave these children orphaned. As population structure changes, so too are changes occurring in the size and composition of households (Poku 2006). A family death always produces change: In some cases, households compensate for a death by asking urbanbased relatives to return home. In rural Kenya, household size decreased by a greater number when an adult woman died – because boys were sent to relatives and girls were fostered or married off. The death of an adult male

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resulted in a small, but still significant downward shift in household size (Yamano and Jayne 2002). Remarriage of a widow may or may not occur; if not, household size will definitely become smaller (Barnett and Whiteside 2002). What definitely is happening is that household composition is changing under the impacts of HIV/AIDS. Among the forms of households that may emerge following the death of a prime-aged adult are:

• Households headed by elderly people who are caring for young children. • Large households composed of unrelated fostered or orphaned children. • Households in which groups of children are cared for formally or infor• • • •

mally by neighbouring adults. Households composed of a single, childless adult woman or man. A growing number of households headed by women. Households headed by children, who are caring for siblings. Households dissolve completely and members disperse.

In Senegal, noted for its low prevalence, the tendency is for household members to disperse both before and following the death of a male family head (Niang and van Ufford 2002: 14) Across the continent, households are being re-configured in ways that have long-term implications for household livelihoods, poverty alleviation, national productivity and national development strategies. Government leaders that have assumed that African household systems will absorb the impacts of HIV/AIDS are likely to find that the changes in household structures severely constrain what households are able to do without additional assistance.

Towards a ‘hollowed states’ hypothesis The haemorrhaging of lives due to HIV/AIDS is hollowing out state institutions. Though the exact mechanisms through which the process is unfolding is not fully mapped and as a result, poorly understood, it is possible that the epidemic does not have a linear impact on state–society relation, but creates a multifaceted process which may even produce contradictory results. Over the longer term, sustained human capacity losses may leave states incapable of protecting and providing for their citizens, thus failing at a principle function of state effectiveness. Elsewhere, William Zartman (1995: 5) defines state collapse as a condition where ‘the basic functions of the state are no longer performed’. In other words, a position where governments fail to maintain efficient public institutions; to produce/deliver sound policies; promote the rule of law; sustain livelihoods; and provide an enabling environment for public, private and civil society to play their respective roles. In truth, these have all been hard to achieve by states born out of external aggression with a legitimacy deficit, but the position is getting progressively worse because of HIV/AIDS. With HIV/AIDS, although the territorial

62 The Politics of AIDS Impacts on core pillars of democracy Political representation Increased attrition among elected officials

Effects on democratic processes Increased number of by-elections Increased number of power-shifts in local representation to parliaments

Participation in elections Reshaped demographic pattern of electorates Support bases for political parties weakened differentially

Electoral administration and management

HIV/AIDS

Loss of competence and human resources

Skewed electoral representation Under-representation of specific social groups, such as youth, women and ethnic groups

Risks to political stability Continuity of government is disrupted Development of regional policy becomes disjointed Greater political alienation among groups that are underrepresented in government Increased illegitimacy of central government in certain regions

Decreased transparency in elections Reduced efficacy of electoral processes

Increased opportunities for electoral fraud Reduced confidence in the electoral system

Depleted rural electoral management systems

Popular political opinion

More people are likely to prioritize HIV/AIDS over other political issues

Increased percentage of the electorate is personally affected directly or indirectly by HIV/AIDS

Politicization of HIV/ AIDS through increased civil society activity

Greater political instability within states

Increased discontent with political leaders who do not commit to policies of social protection, prevention and treatment of HIV/ AIDS Distortion of public expenditure frameworks

Public administration and service delivery Reduced size of public sector work force Loss of institutional knowledge, specialized skills and managerial skills

Reduced capacity to implement democratic decisions Vicious circle of decline in service delivery Lowered capacity to achieve the MDC

Hollowed-out structures of state Increased corruption Reduced state legitimacy

Deteriorating work morale

Figure 4.5 Dramatization of the impact of HIV/AIDS on political systems and processes Source: Cited from Poku et al. (2007a): 24.

boundaries of the state remain, the impact is such that state structures are systematically eroded over time – see Figure 4.5. His Excellency Kenneth Kaunda provides the following image of what is going on in his beloved country, Zambia: At independence in 1964, the country had produced only 100 university graduates after 70 years of British rule. Of these, only 3 were medical doctors. We realized that we needed to develop our manpower in order for the country to attain the capacity to develop. To cut a long story short, by the time I was leaving office in 1991, we had produced about 35 000

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university graduates. But unfortunately, we have since then, lost many of these young women and men who we trained at great cost, to AIDS. In view of the critical contribution these people were making to national development, there can be no doubt that this loss, has seriously impaired the capacity of Government to provide the necessary economic and social services in many sectors of national development.4 A fundamental organizational principle of the state – that the civil servants who assure its effective functioning – is thrown into question by the incapacity from prolonged illnesses and early deaths of government employees due to the epidemic. It is not, however, only the absolute levels of mortality of public servants that should concern policy makers, serious though this is, they should also be particularly concerned about the broader implications of high and rising levels of morbidity and mortality for institutional knowledge formation and retention – that is, how to sustain an organization and ensure that it operates efficiently under conditions of persistent losses of human resource capacity. The impact of HIV/AIDS on the educated and professional cadres reduces their ability to pass on their accumulated knowledge and expertise to succeeding generations. As a result, younger and less experienced workers find it harder to acquire the specialized skills, expertise and professionalism needed for their jobs. In the longer term there will be fewer experienced officials available to train younger personnel in key formal skills, or pass on more informal standard operating procedures or norms such as ministerial accountability, bureaucratic neutrality, official ethics and institutional transparency with consequential effects on the quality of both public and private services. A highly publicized World Bank study argues that after allowing for inter-generational losses of human capital (and knowledge), the projected macroeconomic effects of HIV/AIDS will be severe (Bell et al. 2003). These inter-generational effects were already widely noted, especially in relation to the effects of HIV/AIDS on agriculture (McPherson 2003). The study, however, represents a watershed for the World Bank. To this point, its research had concluded that the macroeconomic impacts of HIV/AIDS would be limited (Bonnel 2000). This impact is further exaggerated by existing weaknesses in state capacity, such as reforms of the civil services, staff departures to the private sector or other countries, and financial constraints undertaken at the behest of international agencies. The outcome is that, in the most affected countries, the epidemic is already adversely affecting institutional robustness and vitality, reshaping governmental structures, and restructuring state–society relations. Existing problems of regime transition are accentuated by the human capacity loss associated with HIV/AIDS. Political and other power is concentrated among few individuals and originates from a relatively homogeneous pool, who also dominate the army and army-related business, etc.

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The removal of individuals or specific groups from power, stands to either harden the exclusivity of access to power or create the need for the governing elite to become more inclusive. These transitions can become source for unrest and ineffective government, further undermining the needs of the electorate. The state also stands to lose monopoly on violence as the virus becomes entrenched at high prevalence rates in the armies and police forces, destabilizing their unity and effectiveness both as peacekeepers and for humanitarian missions. AIDS undermines the preparedness of armed forces, and infected personnel who feel they have ‘nothing to lose’ may remain undeterred by institutional rules and regulations to reduce the spread of the disease (Heinecken 2001). Elsewhere, McPherson rightly argues that HIV/AIDS strips time out of the decision horizons of those who are infected or affected (McPherson 2003). Individuals who are HIV positive (or think they are) begin concentrating on the present and immediate future. Many activities that used to be attractive when life expectancies were ‘normal’ lose their appeal, and even their relevance.5 Consequently, HIV/AIDS changes economic behaviour, often dramatically. The act of saving, for example, requires individuals to forgo consumption. With time at a premium, the incentive to save diminishes. Investment, which involves the commitment of current resources in the expectation of some future benefit, becomes less attractive. At the macro level, these trends are self-reinforcing. The decline in savings reduces the resources available for investment. As investment falls, the rate of economic growth declines, reducing the supply of savings. As a result, we can expect national revenues to diminish in comparative terms and the productivity and profitability of businesses to fall. As production and service delivery is disrupted, income is also likely to fall. These are no longer projections; evidence suggests that families and businesses are shifting spending from productive activities to medical care and related services, reducing both savings and government revenues (CHGA 2005b). At the same time, the costs associated with dealing with the epidemic are increasing for government. Government agencies are diverting funds from planned development activities in order to pay for the increased costs of ill and dead employees. These declines in economic activity are reducing tax revenues, lowering the capacity of the public sector to undertake its functions at a time of increased demand for public services in health, education and training. While the macroeconomic impacts are not immediately clear (i.e. GDP), we can anticipate that reductions in skilled human capacity due to declining life expectancy, will eventually adversely affect economic output; an impact that will be compounded by reduction in productive efficiency associated with increased incidences of ill health and shortages of critical skills. In high HIV prevalence countries, we can also expect a non-linear impact of HIV/AIDS on economic growth – the longer they persist, the more difficult/costly

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recovery will become. We are already seeing this in Southern Africa – here the cumulative impact of HIV/AIDS has sapped the resilience and flexibility of countries in this region and thus reducing their ability to sustain economic growth. The decline in economic activity is taking place against a background of rising social service expenditure, both private and public, which further strains government budgets as well as increasing poverty. According to the Commission on HIV/AIDS and Governance in Africa, in countries with consistently low HIV/AIDS prevalence rates (e.g., below 4 per cent), we can expect Gross Domestic Product (GDP) to be only slightly affected. But in countries where the epidemic is 10 per cent or more we predict that if nothing changes, these economies could be 18 per cent smaller by 2020 (CHGA 2005b). Even with conservative assumptions, we calculate that HIV/AIDS-related mortality and morbidity has already cost Africa about 15 per cent of its GDP in 2000. This translates into a decline in income of 1.7 per cent per year between 1990 and 2000, an amount greater than previous estimates which were based solely on the loss of output due to the epidemic.

Looking to the future The net effect may be to generate institutional fragility compromising the overall capacity of the state to deal effectively with national emergencies. The effect is then circular; the epidemic weakens government institutions, rendering the government increasingly ineffective in stopping the very agent that is weakening it. The result is a downward spiral wherein the epidemic relentlessly reduces state capacity, even as the state requires ever-increasing capacity to stop the growing epidemic. The structures of government remain, but the ability to govern is diminished. It may be useful to refer to this situation as the ‘hollow states’. The concept refers to the existence of state systems, but the inability of the state to fulfil its stated responsibilities and functions. It implies a weak state, without the ability to provide sustained leadership across society. It further implies a state relying largely on the support of those who receive some benefit from its existence. Finally, it implies a form of governance in which the state is unable to adequately interact with citizens through democratic institutions. As the impact of HIV/AIDS runs its course over the next two decades, the key issue is how to maintain and expand the ability of the state to supply essential goods and services that affect all sectors of society. One of the biggest political challenges will be to prevent the hollowing out of state structures because of staff losses and reduced resources. It will require minimizing the current and future losses of human resources, especially in key development sectors. It will require new approaches to supporting both rural and urban livelihoods. The ongoing discussions raise the central question of

66 The Politics of AIDS

how African states can remain functional in the coming years. This question becomes even more pertinent, because it is likely that the worst of the epidemic’s impact lies ahead. There are, it seems to me, two elements which go some way to providing an answer: The first is the provision of treatment for people living with HIV/AIDS (PLWHA) on the continent. Although not a cure, triple antiretroviral therapy (ART) increases the quality of life of people living with HIV/AIDS, in addition to easing the burden of their care on families and health systems. Antiretroviral therapy reduces mortality by up to 90 per cent and the risk of major opportunistic infections by 55–80 per cent, at least in the first years of treatment. The reduction in the cost of ARV and other drugs have significantly changed the possibilities for treatment of PLWHA, but it has also changed the potential for reducing the socio-economic cost of the epidemic to countries in SSA. It has done so in the following ways: ARV treatment both directly reduces the infectivity of people and indirectly makes prevention programmes more effective by creating opportunities for effective treatment. This improves the probability that people with HIV, or those who think they may be HIV positive, to interact with Voluntary Counselling and Testing (VCT). In this sense, treatment and prevention are linked in effectiveness, and not in competition for resources, at least not always, and not everywhere. These links to effective prevention activities have now been confirmed by many studies and it is evident that increasing access to treatment has the potential to transform the effectiveness of prevention activities, in part through widening access to VCT and in part through the mobilization of civil society organizations and communities.6 The costs of the epidemic to societies and economies are of course much greater than those usually quantified by economists, and so the benefits from treating people will also be greater, once there is a full accounting for the losses. These costs are to a significant degree socio-economic, and are largely avoidable through increasing access to treatment. Thus the costs of inactivity in conditions of weak access to treatment are much greater than the UNAIDS estimate of losses of 2.6 per cent of GDP annually, once all of the direct and indirect costs of the epidemic are factored into the analysis. There is a separate and powerful case to be made in respect of access to ARV therapies for pregnant women where HIV transmission can be reduced substantially through the provision of Mother to Child Transmission (MTCT) of HIV programmes that are relatively inexpensive and clearly beneficial to mothers and infants. The benefits are, of course, not confined to the direct beneficiaries but also accrue to society as a whole. Thus in most countries in SSA even under the present cost conditions relating to the supply and delivery of ARV therapies, the total benefits undoubtedly exceed costs. This is true even in the poorest countries once there is a full calculation of all the benefits from increasing access to ARV treatment.

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The second element is human capacity planning. National policy makers must sustain and improve the pool of human resources in the face of HIV/AIDS. In most countries it is still the case that most workers are free of HIV infection and are productively employed. It follows that keeping the labour force free of HIV infection through an expansion of prevention activities must become everywhere a priority. It should not be assumed by the national planning process that public services can continue to be supported with the present establishments, and innovative ways of delivering educational, health and other services that are less human resource intensive must be developed. If present losses of skilled and professional labour are to be addressed, it is clear that responding to losses through an expansion of existing training programmes will rapidly become too costly for national budgets. Both new ways of delivering essential public services need to be developed and implemented, and less costly ways of meeting the needs for skilled and professionally qualified labour need to be identified and delivered. To match and improve skills the educational sector must adapt to the human resource needs of other sectors as well as its own. Managers must ensure that workplace training, and skills developed on the job are not lost. Professional criteria, the length and speed of training, standards and quality of training and the constraints on the capacity to train determined by infrastructure and number of teachers must be addressed. The losses of qualified personnel from public to private, rural to urban, national to international and to other employment requires that the public sector in particular undertake salary and other reforms so as to ensure that key human resources are retained for national and sectoral priorities. It is evident in many countries that conditions of service of public servants are no longer related to the need to retain and recruit the labour that is needed in the face of the attrition caused by HIV/AIDS and the internationalization of labour markets. Responding to the new and emerging conditions of labour markets – both internally and externally – will not be easy but it is essential that countries plan for the needed changes rather than simply respond to market outcomes. Losses of labour are not of course confined to the public sector but are common throughout the economy. Many international firms have already responded to the threats posed by HIV/AIDS for their human resources through comprehensive workplace programmes that ensure access to care, support and treatment for staff (and sometimes families). There are examples also of the public sector similarly developing workplace programmes for HIV/AIDS. The problem is that such programmes are far too limited in number and in terms of the coverage of the labour force, and efforts by government and enterprises supported as appropriate by international organizations and bilateral donors are needed to take these activities to scale. Additional resources – both financial and technical – will be needed if there is to be a rapid expansion of workplace programmes but research demonstrates their importance in the national response to the epidemic.

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Notes 1. I am very grateful to my Ph.D. student Jacqueline Therkelsen for providing an excellent research support. 2. Under the assumption that the median time from infection to death is 10 years, adult mortality would increase by 7 per 1000 or 100 per cent. As the group aged 15–49 typically accounts for 20 per cent of number of deaths in the absence of AIDS, the aggregate mortality would increase by 20 per cent. 3. With an HIV prevalence of 20 per cent, adult mortality rises from 7 to 27 deaths per 1000 or 386 per cent, which translates into a 77 per cent increase in the total demand for health services. 4. Taken from an interview with author by His Excellency Kenneth Kaunda, first President of Zambia on 19/03/06 in Lusaka, Zambia. 5. For purposes of exposition I focus on diminishing time horizons. HIV/AIDS also raises the risks faced by the individual. As HIV/AIDS spread reducing economic growth, these risks become systemic. In this regard, HIV/AIDS represents a ‘public bad’ with adverse spillover effects from the aggregate economy to all individuals and households. These spillover effects create conditions similar to those described by Gladwell (2000) causing societies to ‘tip’ into a sustained decline. 6. See, for example, The Evaluation of HIV/AIDS Drug Access Initiatives in Cote D’Ivoire, Senegal and Uganda: how access to antiretroviral treatment can become feasible in Africa, AIDS Vol. 17, Supplement 3, July 2003.

References Ainsworth, Martha and Semali, Innocent (1998), ‘Who dies from AIDS? Socioeconomic Correlates of Adult Deaths in Kagera Region, Tanzania’ in Ainsworth, Fransen and Over (eds) Confronting AIDS: Evidence from the Developing World, Background Papers from the World Bank Policy Research Report, Confronting AIDS: Public Priorities in a Global Epidemic. Brussels: European Commission. Ake, Claude (1987), ‘Sustaining Development on the Indigenous’, paper prepared for the World Bank long-term perspectives study on Africa (December): 24. Barnett, Tony and Whiteside, Alan (2002), ‘Poverty and HIV/AIDS: Impact, Coping and Mitigation Policy’, in G. A. Cornia (ed.) AIDS, Public Policy and Child Well-Being. Florence: UNICEF/Innocenti Research Centre. Barnett, Tony and Whiteside, Alan (2006), AIDS in the Twenty-first Century: Disease and Globalization. 2nd edn. Basingstoke: Palgrave Macmillan. Bell, C., Devarajan, S. and Gersbach, H. (2003), ‘The Long-Run Economic Costs of AIDS: Theory and an Application to South Africa’, Heidelberg University and the World Bank. Bonnel, R. (2000), ‘HIV/AIDS: Does it increase or decrease growth in Africa?’, draft World Bank, Washington, 6 November (published in the South African Journal of Economics, 68(5), December). Bradshaw, D., Groenewald, P., Laubscher, R., Nannan, N., Nojilana, B., Norman, R. et al. (2003), ‘Initial burden of disease estimates for South Africa, 2000’, South African Medical Journal 93: 682–8. Buve, A. et al. (2001), ‘Multicentre Study on Factors Determining Differences in Rate of Spread of HIV in Sub-Saharan Africa: Methods and Prevalence of HIV Infection’, AIDS 15, suppl 4, S5–S14.

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CHGA (Commission on HIV/AIDS and Governance in Africa) (2004a), ‘HIV/AIDS and Rural Communities’, background paper for CHGA Interactive Ethiopia. Addis Ababa. CHGA (2004b), ‘Impact of HIV/AIDS on Families and Communities in Africa’, Addis Ababa. CHGA (2005a), ‘Impact of HIV/AIDS on Gender, Orphans and Vulnerable Children’, Discussion outcomes of CHGA Interactive Cameroon, Addis Ababa. CHGA (2005b), ‘Impact of HIV/AIDS on Government Departments’, Addis Ababa. Gladwell, M. (2000), The Tipping Point How Little Things Can Make a Big Difference, Boston: Little, Brown and Co. Gregson, S., Terceira, N. Mushati, P. Nyamukapa, C., Campbell, C. (2004), ‘Community group participation: Can it help young women to avoid HIV? An exploratory study of social capital and school education in rural Zimbabwe’. Social Science & Medicine, 58(11): 2119–32. Groenewald, P., Nannan, N., Bourne, D., Laubscher, R. and Bradshaw, D. (2005), ‘Identifying deaths from AIDS in South Africa’, AIDS 19:193–201. Heinecken, L. (2001), ‘HIV/AIDS – The Military and the Impact on National, Regional and International Security’. Society in Transition 32(1): 120–47. Herbst, Jeffery (2000), State and Power in Africa. Princeton: Princeton University Press. Hobbes, Thomas (1968 [1651]), Leviathan. Harmondsworth: Penguin. McPherson, M. (2003), ‘Human Capital, Education, and Economic Growth: The Impacts of HIV/AIDS’, draft paper, Belfer Center, John F. Kennedy School of Government, Harvard University. McPherson, M.F. and Rakovski T.S. (2000), ‘Understanding the Growth Process in SubSaharan Africa: Empirical Evidence’ in (ed.) M.F. McPherson (2003) op. cit. McPherson, M.F. (ed.) (2002), ‘Restarting and Sustaining Growth and Development in Africa’, in (ed.) M.F. McPherson (2003) op. cit. Niang, C.I. and van Ufford, P.Q. (2002), ‘The Socio-Economic Impacts of HIV/AIDS on Children – The Case of Senegal’, working draft. Chiekh Anto Diop University, Dakar, January. Poku, Nana K. (2006), ‘The Politics of Africa’s AIDS Crisis’, Cambridge: Polity Press. Poku, Nana K., Whiteside, Alan and Sandkjaer, Bjorg (2007a) AIDS and Governance London: Ashgate Press. Poku, Nana K. and Senghor, Jeggan (2007b), Towards Africa’s Renewal, London: Ashgate Press. Rau, Bill (2002), ‘Intersecting Risks: HIV/AIDS and Child Labour’, Geneva: International Labour Organization. Reno, William (1999), Warlord Politics and African States, Colorado: Lynne Rienner Publishers. Stanecki, Karen A. (2004), ‘The AIDS Pandemic in the 21st Century’, International Population Reports WP/02-2. Washington, DC: US Census Bureau. United Nations Department of Social and Economic Affairs, Populations and HIV/AIDS index 2006, United Nations Publications, 2007. UNAIDS, UNICEF and USAID (2004), ‘Children on the Brink 2004: A Joint Report of New Orphan Estimates and a Framework for Action’, Geneva. UNAIDS/WHO (2006), ‘AIDS epidemic update: 2004’. Geneva. UNDP (2006), ‘Human Development Report’, Oxford: Oxford University Press. United Nations (2006), World Health data 2005. New York: UNDESA/Population Division. United Nations (2007), World Population Highlights, 2006 Revision. New York: UNDESA/Population Division.

70 The Politics of AIDS Wallerstein, I. (2005), Africa: The Politics of Independence and Unity, Nebraska University Press. WHO–AFRO (World Health Organization, Regional Office for Africa) (2006), HIV/AIDS Epidemiological Surveillance Update for the WHO African Region 2006. Harare. World Bank (1996), ‘World Bank Annual Report 1996’, Washington DC: World Bank. World Bank (1997), World Development Report: the State in a Changing World Oxford: Oxford University Press. World Bank (1996), Poverty Reduction and the World Bank: Progress and Challenges in the 1990s. Washington, DC: World Bank. Yamano, Takashi and Jayne, T.S. (2002), ‘Measuring the Impacts of Prime-age Adult Death on Rural Households in Kenya’, International Development Collaborative Working Papers KE-TEGEMEO-WP-05, Department of Agricultural Economics, Michigan State University. Young, Crawford and Turner, Thomas (1985), The Rise and Decline of the Zairian States. Madison: University of Wisconsin Press. Zartman, I. William (1995), Collapsed States: The Disintegration and Restoration of Legitimate Authority. Boulder: Lynne Rienner. Zartman, I. William (ed.) (1997), ‘Governance as Conflict Management: Politics and Violence in West Africa’, Brookings. Zartman, I. William (2005), Cowardly Lions: Missed Opportunities to Prevent State Collapse and Deadly Conflict, Boulder: Lynne Rienner. Zartman, I. William (2007), ‘The African State’, in Poku, Nana K. and Senghor Jeggan (2007) op. cit.

5 The Unattended Dimension: AIDS and Governability in Africa Bertil Egerö and Mikael Hammarskjöld

Introduction As predicted in the late 1980s, dramatic demographic impacts of the AIDS epidemic in heavily affected countries are now unfolding. Rising adult mortality inevitably weakens institutions and processes in all parts of society. However, aside from a fairly lively debate on the effects on democratic institutions and electoral processes, public sector impacts of AIDS morbidity and mortality have so far received little attention and are rarely mentioned among the factors influencing the fight against the epidemic. Much of current writing on institutional impacts, often based more on reasoning than on facts, conveys a firm conviction that the effects of the epidemic on public sector functioning are likely to be substantial if not catastrophic. Such predictions are supported by expectations that costs related to staff losses will escalate to unbearable heights. A more indirect effect, no less important, is the weakening of institutional memory that the replacement of senior staff with junior implies. Today, governments may lean on the promise of anti-retroviral therapy or ART1 as a remedy to further staff losses. But little is yet known about the many obstacles to sustained – and sustainable – services to an ever-growing body of clients, and whether and how these can be handled by a weak public sector. Looking at Sub-Saharan Africa, the chapter reviews evidence linked to AIDS impacts on ‘governability’ – the management and control capabilities expected from a public sector. While governments might show a satisfactory semblance of order and capacity to the world, prospects are that the discrepancy between demands (from citizens, market and donor organizations) and capabilities will widen, a development that could also jeopardize the sustained use of ART to mitigate internal staff losses.

Governability – distinct from ‘governance’ Almost 20 years ago, in 1989, a UN-hosted workshop analysed the current state of knowledge about demographic impacts of AIDS (UN 1991). At that 71

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time data was scanty, and the discussion drew on results from a variety of early models fed with some data on patterns of sexual relations. The different approaches were found to give basically the same picture: AIDS was going to have a substantial and long-term impact on adult mortality, and thereby on the age pyramids of affected populations. Thus the stage was set. The workshop proceedings were there for everyone to read. National and international actors had a unique chance to adjust their agendas to the gloomy future predicted, indeed to ‘nip it in the bud’, i.e. search for measures to pre-empt future impacts on societies and economies of long-term drains of their most able members, the productive young adults. However, the opportunity offered by these predictions was not grasped. True, sector impacts from the losses of agricultural extension workers, teachers and health staff have been widely discussed, often however with little noticeable impact on parallel discussions of the important roles these public sector employees can and should play in prevention and care activities. The losses among less obvious but equally important categories of civil servants are rarely made visible, even less analysed in terms of impacts such as bureaucratic malfunctioning or impediments to decision-making. Macro-economic impact studies have tended to come up with seemingly sobering conclusions – the effects of AIDS on GDP and economic growth are not very dramatic, especially if expressed in per caput terms. Common to such studies is that they pay insufficient attention to indirect or secondary level impacts, among them the weakening of the organizational capacity of the public sector itself (de Waal 2006: 86ff ). It is precisely the state capacity to organize and deliver that the current chapter addresses. This capacity is, as shown by various historical cases, not necessarily dependent on Western-style democratic institutions and processes.2 For this reason alone, the widely adopted concept of ‘governance’ would seem unsuitable for our purposes. There are, however, more general reasons to question the value of the concept in development studies. Its operationalization appears to be streamlined to suit World Bank policy priorities more than drawn from theoretical considerations. Much emphasis is placed on democracy, transparency and corruption, and less on what functions given the external constraints on countries ‘in the periphery of the world economy’,3 where the informal sector often balances the formal in importance for individual citizens. Accepting that ‘governance is a contested and difficult concept’ (Hydén 2007: 3; see also the discussion of the concept in Chapters 7 and 16) whose validity is far from clear, we have found it necessary to propose an approach that allows for more specific focus on the needs created by the AIDS epidemic; that the state delivers knowledge, means of prevention and means of staving off premature death. By governability we mean the administrative and financial capacity of a state apparatus to keep the complex web of regulated interactions and exchanges going that characterize a nation; the

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decision-making, follow-up and controls, the relations to a private sector of the economy, the interaction with and services to civil society in all its ramifications. The upholding of law and justice, infrastructure development and maintenance, adjustments to international processes and agreements are parts of the issue.

What is known about the impacts of AIDS in the public sector? Public services are affected so severely in some countries that old methods of administration are no longer sustainable and they need to be reconstructed – i.e. adopting new ways of working and managing human resources – to account for AIDS’ impacts on their own staff. Special efforts will be needed if they are to maintain their organizational integrity, protect and add to existing knowledge and expertise, and meet the rising demands on service delivery.4 The meaning of ‘impact’ of AIDS on government offices is not immediately clear. There are some obvious features, such as (paid) AIDS-related staff absenteeism affecting both performance and budget losses, effects that extend beyond the death of an employee through a period of staff recruitment and work training. Frequent staff losses to death inevitably lead to accumulating expenses for pensions and other support to surviving families. But there are also other more subtle changes, less easy to observe and still with problematic impacts. In those countries where prevalence levels are high, AIDS deaths will increasingly force government departments to replace senior staff with younger and less experienced persons. The effects are not only a matter of efficiency and finance. Applying the process to a whole government, de Waal (2006: 69–70) summarizes the thinking of McPherson et al. (2000) in the following terms: [such] countries . . . would find it difficult to sustain the complicated, rulebound systems necessary for modern democracy. Their institutions would slowly grind to a halt. In contrast to the familiar systems of state failure – violent conflict and civil disorder – we would see a much quieter form of paralysis. States might end with a whimper rather than a bang. Meanwhile, the pattern of political governance would regress to more traditional, authoritarian structures. . . AIDS would create new patterns of power – or recreate old ones. The threat of such regression is most likely some way from materializing even in heavily affected countries. Rather, as de Waal asserts (2006: 3), governments have so far proved ‘remarkably effective at managing the HIV/AIDS epidemic in a way that minimizes political threats’. Perhaps it is a matter of time scale, and also of finding the indicators of change that enables an

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analysis of AIDS-related effects separate from those of other external interventions, such as structural adjustment and staff reduction, or staff leaving for better job prospects. Concrete manifestations are however not lacking. Health services are on their knees not only through growing queues of AIDS-sick patients adding to the normal flow of sick people. Health-care staff are understood to be particularly exposed to the risks of HIV infection – something that might

Box 5.1 Special studies required to identify AIDS-related staff impacts As Rau (2004) points out, a variety of factors make it difficult to identify the specific effects of HIV/AIDS: 1. Systematic information on AIDS morbidity and mortality has rarely been collected, and the non-anecdotic information available refers to particular sectors such as health and education, and mostly to subnational units and for short periods of time. 2. In most cases, governments have only recently mounted extensive prevention and care programmes for government employees, and where ministries and other public sector entities have introduced HIV/AIDS workplace policies, the effects of the epidemic have in most cases fallen outside the scope of regular workforce planning. 3. The effects of HIV/AIDS on the government workforce tend to be both confused with and compounded by other changes affecting the public sector: a. Public sector reforms or restructuring programmes have in a large number of countries resulted in downsizing of the civil service. This may result in vacancies caused by AIDS death, retirement and other reasons not being filled. b. ‘Brain drain’ especially of middle rank civil servants to NGOs, private companies, international organizations, etc., could be at least as important as AIDS-induced losses. c. Today’s senior civil servants, who started working in the ‘expansion decades’ following independence, are moving into retirement and thereby contributing to loss of institutional memory. Clearly, simple management information data on staff turnover, although a necessary input, would not suffice for an understanding of what is happening. Special studies addressing cause and effect relations are required. At the same time, the weakening of the public sector is likely to influence negatively on the capacity to maintain quality and accuracy in such basic information.

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add to the propensity to leave for other jobs or even other countries with better working conditions. Whether and how the public sector can mitigate internal impacts by supplying ARV to staff depends to a great extent on its ability to manage the health staff crisis.

The bureaucracy and administrative capacity In 2000 one of the present authors travelled to four countries in sub-Saharan Africa searching for actors to scale up HIV/AIDS-related advocacy (UNFPA 2001). Malawi was one of the countries visited. Hit early and badly by the epidemic, the country was suffering from inevitably growing losses of adults. Research in rural areas told about the plight of AIDS-affected communities with serious difficulties to secure their own food, and where food support ranked by far higher than health interventions or education. In the capital, many offices in government buildings were empty – important staff had fallen sick or passed away, and the budget did not permit replacing them. When asked, donor representatives interviewed criticized the government for being late in preparing requested plans and strategies to meet the epidemic; to what extent the government would actually be able to see them implemented appeared not to be much of an issue for the donors. Hard data on staff impact in Malawi’s public sector was difficult to come by at that time. A more recent Sida-commissioned study (Arrehag et al. 2006) offers statistical data for five of the government departments for the period 1990 to 2000. During this period, the average annual attrition rate5 was over 2.3 per cent, the Ministry of Water Development worst hit with 15 per cent. Here as in the other four ministries, around half the loss was estimated to be caused by AIDS. Staff death rates were, with one exception, higher than the national average. Malawi has experienced an uninterrupted increase in HIV prevalence since it was detected in the mid-1980s. In 2003 national HIV prevalence was estimated at 14 per cent. Due to the incubation period of 7–10 years, the ensuing rise in adult mortality should still be underway. By contrast, in Uganda average prevalence rates have fallen from a peak of perhaps 15 per cent during the early 1990s to 6–7 per cent by the end of the decade.6 Many signs point to a rising wave of AIDS-related adult mortality in the early 1990s, possibly sinking again to a lower and relatively stable level later in the decade (see e.g. Epstein 2001). The significance of the epidemic ‘going visible’ is as yet not sufficiently understood. It did lead to a flurry of activities for instance in Makerere University,7 and certainly added to the motivation to pay serious attention to impacts in the broader public sector. A survey covering the years 1995 to 1999 was carried out by Uganda’s Ministry of Public Service (Uganda 2000). Estimated staff loss to death fluctuated around 8 per cent a year, with roughly half the deaths believed to be caused

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by AIDS. The majority of the deceased had at least five years of service in the public sector, many considerably more. These changes have direct financial implications. The government has to carry the costs of absenteeism, of sickness and treatment in staff or their dependants, and ultimately of costs linked to death and burial. The Uganda study reported a dramatic rise in ‘direct financial costs on HIV/AIDS related problems’ from 18.5 million shillings in 1995 to almost 817 million in 1999. To these must be added indirect costs such as ‘loss of skills and experience, hiring new personnel, direct replacement, training and loss of man-hours’ (Uganda 2000: xiii). Trend data is not available from the Malawi study, only an estimate of the additional personnel costs 1990–2000 linked to the epidemic. For the four ministries they add up to between 57 and 84 million kwacha. Extrapolated to the public sector as a whole, the cost is 73–106 million kwacha or between US$ 1.5 and 2.3 million. The authors are convinced that these figures underestimate real costs (Arrehag et al. 2006: 86). How do we relate to the different attrition estimates of countries like Malawi and Uganda? The Malawi study notes: ‘A consequence of the age distribution of death rates is that the pool of employees who are ready to take on senior positions is shrinking. . . In the long run, this will have serious implications for the future leadership and quality of management in the public sector’ (Arrehag et al. 2006 p. 80). Although, as de Waal (2006: 76–7) reminds us, the capitals of these and similar countries are known to have large numbers of ‘talented and qualified individuals’ left without jobs that would fit their competence, this type of professional is not the best substitute when the loss of experience and institutional memory is the key challenge for the public sector. Haacker (2004) offers a way to estimate the full effect of AIDS mortality on institutional memory: The efficiency of an organization at any level may depend on the number of employees who ‘know the ropes’ and who have developed their problem-solving skills through experience. By thinning out this stock of experience, increased mortality – in addition to disruptions caused by sickness and higher attrition – can have an accumulative effect. These longer-term effects are captured in the term ‘institutional memory.’. . . To gain a sense of the implications of HIV for institutional memory, consider its impact on the number of government employees with a tenure of 10 years. Suppose that the attrition rate, excluding HIV/AIDS-related mortality, is 2 per cent and that with HIV/AIDS it rises by another 2.4 percentage points. In the absence of HIV/AIDS, attrition over a 10-year period would be 18 percent, but including the effects of HIV/AIDS it is 36 per cent. Equivalently, institutional memory (here measured by the number of employees remaining with the institution for 10 years) declines by 22 percent. (Haacker 2004: 209)

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There is no easy answer, no shortcut available to handle this issue. Rapid actions to recruit and train new professionals is one answer, job sharing and multi-skills development another. However, as Haacker himself notes, staff recruitment procedures are often and with good reason laborious. In Malawi, all government recruitment is highly centralized. Most staff is on permanent employment, which means that replacement cannot start until they die or retire. A sector ministry requires the approval of three government bodies before recruitment can start, a process estimated to take well over six months. Such conditions are likely to deter prospective workers from even considering employment in the public sector, if alternatives exist.

The health care role of the public sector A few years ago, the donor community spent two international meetings – in Abuja and in Oslo – debating their realization that sub-Saharan African countries were being drained of their health personnel by efficient European recruiting agencies. This special type of brain-drain is growing as a response to the ‘greying’ of Europe’s populations and the lack of vitality that would bring strong new generations to take over social responsibility. In addition, professional training is expensive. To recruit new graduates or more experienced health staff brings good economy to (privatized) health care in the rich countries. In Sweden, we heard at the time the minister for development cooperation explain that it would go against liberal principles to bar such people from choosing where to live and work, a dubious argument at a time when Sweden was priding itself of a very restrictive immigration policy even in relation to vulnerable refugees with asylum rights. It went contrary to a new Swedish policy aimed at subsuming all Swedish international relations under the goal of reducing poverty in poor countries (GoS 2003). It certainly contradicted international support to important measures to fight AIDS through prevention, care and, especially, ART. Internationally, despite strong reactions even from professionals within the rich countries, little seems to happen to restrict recruitment (Sankore 2006). Migration trends among health sector personnel are in most cases not systematically documented. However, a revision of credential verification records gives a good indication of the intention to migrate. In Zambia, recent records show that over two-thirds of nurses looking for work abroad intended to go to other Southern African countries, especially South Africa and Botswana, while over 80 per cent of Malawi and Ghana nurses’ requests were for the UK. South Africa appears to have double roles in this process: emigrated South African doctors and nurses are now estimated to make up around 6 per cent of medical staff in the UK. Back home, an estimated 32 000 vacancies wait to be filled by health staff from other sub-Saharan countries,

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attracted by the better employment conditions compared to those in their own countries (El Pais 2006). The effects of such migration are felt all the more as many of the migrating nurses are highly trained and experienced, whose leaving thus undermines both supervision of critical services and the training of future nurses (Dussault and Dovlo 2005). International job seeking is only one factor behind health worker attrition. Another factor is AIDS: Rau (2004) calculates that 16 per cent of health sector workers (public and private) in South Africa are HIV positive, a proportion that reaches 20 per cent among junior health workers (18–35 years). In the absence of ART, some 6000 health workers would die from AIDS every year. According to the 2006 World Health Report, all countries in the ‘AIDS belt’ of sub-Saharan Africa except Botswana, Namibia and South Africa currently have a critical shortage of health workers – a problem well-known long before donors began to scale up their support to health sector interventions directed at infectious diseases and governments decided to scale up ART programmes. This is the most conspicuous of capacity shortcomings in the public sector: its ability to respond lags further and further behind demands escalating through AIDS-related illnesses, while at the same time it is losing staff to AIDS mortality. In a 2005 review of AIDS and the public sector, Uganda’s Ministry of Health presented a gloomy picture of both international and government funding, in the face of prospects for rising HIV prevalence levels. In particular government funding is going down, while population increase alone, over 3 per cent a year, would seem to motivate steadily rising budget allocations. The delivery of AIDS-related services is impaired by the weakness of both human resources and infrastructure. In the worst affected districts, only 40–45 per cent of approved staff positions are filled by trained health workers (Uganda 2005a). The competition for scarce financial and human resources will inevitably intensify. When the Uganda government promises its own staff and their closest kin full access to ART (see below), the stage is set for a process of priority-setting that will not be easily accepted by the political opposition and people at large. Current practices by private sector institutions such as banks and insurance companies to offer free ARV services to their higher-level staff are very likely to be copied – if this has not happened already – by the public sector. In Malawi, the situation is no better. The health infrastructure is extremely weak, with hardly any skilled staff. Only 10 per cent of the health services is equipped to deliver essential health care. Despite many vacancies, less than 15 per cent of the nurses who have graduated from governmentfunded training have entered the public health service. Many of the already employed leave, switching to the NGO and private markets, or emigrating (Arrehag et al. 2006: 89). The cumbersome bureaucratic procedures

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described above imply that the government cannot keep pace with the rise in vacancies. The AIDS-related deaths not only among health staff but also in the administration itself seem to ensure that things can only get worse. The Malawi government is, even more than the Ugandan, exposed to the risks of abusing office to ensure that scarce resources in ARV services go to its own officers. That risk is heightened with a public service policy that gives staff the right to ART. At the same time, there are strong arguments to back up such a policy – a well-functioning public sector is badly needed if the work to halt the further spread of the epidemic is to make progress.

The national perspective What donor-dependent governments do, or pretend to do, generally reflects what donors request. The room for national political agendas is small (see e.g. Abrahamsson 1997). There is of course always room for initiatives that could attract donors, provided these stay within their defined limits of thinking and acting. The emergence of life-saving drugs might have been what allowed both sides to reflect on the question of AIDS impacts ‘in-house’, i.e. on the same public sector that had so far been assumed to be able to deliver if only given better financial resources. Uganda, with its special political history of tackling AIDS from the mid1980s, with AIDS-related mortality rising to a peak somewhere in the early 1990s, took until the end of that decade to investigate the impacts on the internal situation of the public service (Uganda 2000). Four years later, a draft policy for the public sector had been prepared (Uganda 2004), surprisingly nowhere mentioned in what might be the final draft of Uganda’s long awaited national AIDS policy (Uganda 2005). Uganda’s Public Service Policy is an important document in what it states about the rights of HIV positive staff, non-discrimination, the need to minimize transfers that lead to couple separation, and the need to consider transfers of HIV positive staff only to stations with better medical attention. It also proposes free ART to the officers and their immediate family members. What this means in financial8 and service capacity terms is not spelled out. Implementation is presented as an additional task within the ‘business as usual’ mandate of each ministry. The difficult thing to see and adapt to is that the situation is in no way only ‘business-as-usual’. AIDS is here to stay for the foreseeable future. This requires a profound reassessment of human and financial resources in every sphere of the public sector. In Uganda, the Ministry of Health is basically the same today as in the early years of the epidemic. Yet it is expected to assume a variety of roles today, as the leading agent of a multitude of efforts to contain the epidemic. The financial management and control requirements of such roles appear to be seriously underestimated. Thus, when the Global Fund a

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few years ago transferred substantial sums to the government, a small entity was created within the Ministry of Health to manage the funds to the benefit of a myriad of actors and activities around the country. The result – high corruption, virtually the whole fund emptied – was not entirely surprising. ‘Yet another impact of AIDS’, was the sad comment of a senior colleague at Makerere.9 The conditions under which governments engage in AIDS issues are profoundly different from those in most other areas. ‘A government’s political commitment to preventing HIV/AIDS consists solely in a promise to implement a package of internationally recommended prevention strategies. There is no discernible system of political rewards for success and penalties for failure’, summarises de Waal (2006: 4). Until the advent of ARV, the public sector had nothing substantial to deliver besides condoms and care for the sick. Thus, if we leave out South Africa with its – until recently (Guardian 2006) – peculiar government position on AIDS, there is no case of civil society seriously challenging government on its responses to the epidemic. ARV certainly represents a political opportunity for most governments in sub-Saharan Africa, but it is also a risky challenge. In countries with high HIV prevalence levels, every year a considerable number of healthy people get infected, who some years later will be in need of ART. Thus, any ART programme will see its pool of clients to be served indefinitely just growing and growing, through a steady – if not rising – flow of new clients demanding ART for the rest of their lives. The macroeconomic implications are only just beginning to be exposed (Haacker 2004a). The demands on personnel are no less dramatic. Haacker (2004: 228) cites a study on Zambia estimating that treatment to 10 000 patients will require 13 trained physicians, 13 nurses, 32 laboratory technicians, and 15 pharmacists. Thus, to achieve ‘full coverage of antiretroviral drugs, with 100 000 patients in the first year and 330 000 patients in the fifth year, would require 130 physicians and 316 technicians in year one, rising to 429 physicians (about 50 percent of Zambia’s current physician workforce) and 1043 technicians (more than twice the number of technicians in Zambia) by year five.’ Uganda has started an ambitious ART programme, towards the end of 2006 estimated to cover around 80 000 clients and aiming to incorporate all the currently over 190 000 believed to be in need (estimated from Uganda 2005a). Around September the same year, a huge containment of ARV drugs was discovered in the airport stores, kept in store too long to be of use. This is just one of many examples of the organizational and staff capacity required to keep an ART programme running – ideally without jeopardizing all the other health-care programmes needed equally. A UNAIDS summary reminds us of the dimensions of the task: Government, civil society and private sector leaders must put into place the systems and agreements that will guarantee wide and equitable access

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to microbicides, new generations of drugs, and vaccines for HIV and sexually transmitted infections, as well as improved treatments for diseases such as tuberculosis, which now accounts for the largest proportion of global AIDS-related deaths. (UNAIDS 2006) Behind the optimistic ‘three by five’ calls for the scaling up of ART in AIDShit countries lies the reality of a public sector that itself is badly hit and poorly equipped to scale up its own organizational capacity. This is why the ARV promise of turning a mortal disease into a disease to live with can mark the beginnings of a new state-citizen relation of confrontation and clashes. Here can be found the seeds of a more serious attack on ‘democracy’ than what AIDS implies for electoral systems and their functioning. The question what might happen brings in the whole debate on how states function in sub-Saharan African contexts (see also Chapter 4). The reality that ‘Africa Works’ (title of a book by Chabal and Daloz 1999) is only contradicted by a few ‘failed states’, the most apparent of them Somalia. States survive in an overwhelming proportion of the cases. That they don’t necessarily develop in the direction of (Western) rational efficiency – the case made in ‘Africa Works’ – is nowadays generally agreed. Nor do they necessarily develop to democracies in the Western sense. Centralized power, bureaucratic control and weak justice systems, combined with the lack of distinguishable social (class) bases for organized opposition, make them politically very resilient to economic stagnation and hardships. This, says de Waal (2006), may also mean that they ‘are well-constructed to withstand the dreadful attrition caused by AIDS’ – and thereby basically unable to deliver a significant response to the epidemic. This leaves the playing field wide open for other actors. South Africa and Uganda, often cited as dynamic actors on HIV/AIDS, are replete with NGOs and CBOs engaged in AIDS-related matters. These organizations are increasingly important recipients of international funding, increasingly capable of setting and developing agendas for action, increasingly competing with the public sector for legitimacy and confidence.10 Indeed, the line is increasingly blurred between NGO and ‘private sector’ – both deliver services, both charge for their services, both are staffed with competent professionals and exist publicly through similar publicity interventions. The special requirements for good ARV services might well create alliances between the two sectors, paving the way for international funding to reach both. The state/non-state relation can be one of competition, but also of complementarity. This requires that the state defines and defends its special areas of authority and control, and maintains the ability to deliver in these areas. That again would presuppose that the state ensures a clear advantage in the production and management of knowledge production. The complexity of impacts and challenges of the AIDS epidemic requires much more work especially in the social sciences than is the case so far. To stay abreast of, guide

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and direct the diversity of other actors, the commonly existing national AIDS commissions need to access and interpret scientific data from active, coordinated research programmes – independent from the state while enabled to attract skilled social scientists. Today, with governments basically lacking an understanding of the importance of scientific production and donors leaning on rapid consultancy work with confines they themselves define, such an agenda is unlikely to develop.

The ‘international community’ – an externality or the driving mechanism? In 2005, UNDP published a report focusing on AIDS’ direct impact on the effectiveness of government institutions. Among its recommendations for action were to require from all service-providing institutions that they set off a part of overall budgets to building supplementary capacity, and that existing state structures are examined to reveal how they impede or facilitate service delivery. Another approach would be to search for ways to improve public administration practices in order to increase efficiency and improve services even in the absence of new resources. Yet by themselves, admits the report, such measures are insufficient to meet ‘the extraordinary challenges facing public authorities at all levels, particularly in key sectors such as health and education, and those responsible for expanding vital infrastructure.’ (UNDP 2005, cited in UNAIDS 2006). One reason is, that resource allocation decisions often are restricted by macroeconomic realities and agreements with international lending institutions. UNDP gives the example of Zambia, that to become eligible for the Highly Indebted Country Initiative had to agree to maintain its public sector wage bill at a maximum of 8 per cent of gross domestic product (UNDP 2005). Aimed at reducing deficits and controlling inflation, this restriction severely limits the country’s ability to employ more public sector workers. The same constraint is faced by the Ugandan government, and effectively stops an expansion of health sector staff so much that newly graduated health workers find themselves unemployed.11 Under such conditions, Europe is assured to get its demands for cheap health staff satisfied even in the future, irrespective of the needs in the poor countries. Are such constraints on national budgets and policy options necessary? They certainly do not contribute to dynamizing the labour market, when the ability of millions to pay for services is so low that the private sector cannot be expected to bridge the gap in service provision. For the international community, the immediate challenge given by AIDS is to scale up its responses. By this is meant not only higher levels of financial flows – the risks on the receiving side are evident, as exemplified above – but also the need to add efficient responses to the structural and contextual dimensions of the problem. The limited approaches still favoured by

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donors are simply insufficient and misdirected. For instance, the British DFID responded to the Malawi health staff shortage with measures such as12 salary increases for certain categories (good, but creates disorder in government salary structures), recruitment of foreign physicians to fill gaps (expensive and unsustainable), and an expansion of the domestic training capacity (unclear for whose benefit, when today only a minority gets employment). The inflation-control and other financial policies that impede a revitalization of the health sector are not mentioned. In spite of donors’ demands for democracy and transparency in poor aiddependent countries, the wider set of international relations is at least as important, often probably much more important, for economic as well as social development. These relations are basically controlled by the richer economies and their organizations such as EU, WTO and the Bretton Woods institutions. Their mandates and goals differ and are often contradictory, with impacts on poor nations that, taken together, might effectively thwart development. The EU package of agricultural trade policies is one example, the IMF/World Bank demands on financial policies in poor countries another. Indeed, responses of a different and much more demanding kind, are required. Only one example may be given. The new directives to the government adopted by the Swedish parliament in 2003 demands that all foreign relations be subsumed under the one goal of reducing poverty in the world (GoS 2003). Thus, not only development cooperation but trade policies, immigration policies, foreign policy in general, should be guided by this aim. A tricky demand for a national government, indeed, and made worse by its subordination to decision-making in the EU, its relation to the World Bank and IMF, and other international ties. Nevertheless, it represents a bold step – indeed a new gear – in Swedish thinking about global poverty and development problems. A similarly radical new thinking is required in international actions on AIDS, in a way comparable to the thinking required to address global climatic change. High on the agenda should be the conditions that make a generalized epidemic of this kind possible in poor countries – endemic poverty, growing social and economic polarization, people’s uncertainty about the future, the fatalism among young generations, to mention the most easily accessible dimensions. The AIDS epidemic – indeed the AIDS pandemic – has too long been referred to the medical establishment supported by behavioural change specialists. The experiences of over two decades of work to contain the AIDS epidemic do not give much reason to hope for significant advances. The scientific knowledge acquired during these decades is indeed advanced, in certain important but still limited dimensions of the challenge. A broader research agenda is required, directed to the medium- and long-term perspectives of AIDS and society and building on at least three different research orientations: (1) civil society and social mobilization; (2) globalization (a wide spectrum

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of dimensions) and domestic development; and (3) the state in between civil society, market and the international context. The comparative lack of knowledge about how AIDS impacts on public sector organization and management is a clear indication that research agendas on AIDS need to be liberated from the dominating perspectives of the donor community and, in the same vein as most domestic funding to science in the richer countries, supported to bring its own contributions to bear on the global struggle against AIDS.

Notes 1. ARV is the commonly used acronym for life-saving drugs – antiretrovirals – to HIV/AIDS clients. ART stands for the drugs intake and control regimen required to suppress AIDS. 2. The twentieth century experiences of socialist states offers many examples of this. Today, Cuba is a good example of efficient organization, as evident from its good record in health and social development. Even mature democracies are known to immobilize the democratic processes in situations that require broad mobilization and efficiency in solving national problems. 3. This quote and the one in the next paragraph are from Hydén 2007. Personal contact with Göran Hydén in Lund in January 2007 helped clarify issues. See also Hydén et al. (2004). 4. UNAIDS 2006: 186, referring to Sengwana and Quinlan 2004. 5. Attrition refers to the organisational loss of labour, and is measured as the number of workers who during one year left the organisation per 1000 workers employed. 6. Allen (2005) is one of the writers trying to bring sense in the debate about peak levels. Before the mid-1990s, national averages depended almost entirely on sentinel data from southern Uganda. The often quoted maximum level of 30% seems to derive from one observation, ‘Mbarara urban’ in the south-west in 1992. Allen reports a national average in 1993 to just under 12%, still based on a geographically skewed set of sites. See also Uganda 2005a, where a peak of 18% is offered, and Way 2003. 7. Students and staff at Makerere took a series of initiatives aimed at getting the central administration to act. The appeals were left unanswered, however, and most staff appears to have resigned itself to such human impacts as ‘a fact of life’ (see Egerö 2006). 8. True, the document estimates the costs for its own printing and dissemination, and recommends concerned departments to calculate the likely financial implications of AIDS including health care etc. to be made available. By 2005, the small budget required for printing and dissemination had not yet been secured (Uganda 2005a). 9. Although investigations are made and some money returned, the political dimension of this scandal has not been under serious discussion. The Global Fund has since resumed funding. 10. Uganda’s Ministry of Health notes, that ‘Indeed, experiences with such as PEPFAR suggest that the reliance on project aid perpetuates the vertical nature of AIDS funding, cutting it out from Uganda’s broader development agenda’ (Uganda 2005a).

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11. Personal information from a member of the Swedish embassy in Kampala. Similar constraints on employment are likely to be found in many countries. Despite urgent needs in the health sector Kenya was estimated to have had 4000 unemployed nurses in 2005 (Krauss 2005). 12. According to Arrehag et al. (2005: 89).

References Abrahamsson, Hans (1997), Seizing the Opportunity: Power and Powerlessness in a Changing World Order, The Case of Mozambique. PADRIGU, Göteborg University. Allen, Tim (2006), ‘AIDS and Evidence: Interrogating some Ugandan Myths’, Journal of Biosocial Science 38(1): 7–28. Arrehag, Lisa et al. (2006), The Impact of AIDS on the Economy, Livelihoods and Poverty of Malawi. Country Economic Report 2006: 1, Sida Stockholm. Chabal, Patrick and Daloz, Jean-Pascal (1999), Africa Works: Disorder as Political Instrument, London: James Curry. De Waal, Alex (2006), AIDS and Power: Why there is no political crisis – yet. Zed books and David Philip. Dussault, Gilles and Dovlo, Dela (2005), Mobile populations: The human resources crisis in the health sector, AF-AIDS eForum on mobile populations 4 July 2005 http://www.healthdev.org/eforums/cms/inv-archives.asp. Egerö, Bertil (2006), ‘HIV/AIDS on the Campus: Universities and the Threat of an Epidemic’, Eastern Africa Social Science Research Review XXII (2) June: 31–50. El Pais (2006), ‘Los blancos se van de Suráfrica, discriminación poco positiva’, El Pais (Spain), 13.11.06 p. 8. Epstein, Helen (2001), ‘AIDS: The Lesson of Uganda’, New York Review of Books 6 June. GoS (2003), Sveriges politik för global utveckling [Sweden’s policy for global development], Government of Sweden Skr. 2004/05: 4. Guardian (2006), ‘South African government ends Aids denial’, Guardian unlimited 28 October, http://www.guardian.co.uk/aids/story/0„1933873,00.html Haacker, M. (2004), ‘The impact of HIV/AIDS on government finance and public services’, in M. Haacker (ed.) The Macroeconomics of HIV/AIDS. Washington: International Monetary Fund. Available at http://www.imf.org/external/pubs/ft/AIDS/ eng/index.htm. Haacker, M. (2004a), ‘The Impact on the Social Fabric and the Economy’, in M. Haacker (ed.) The Macroeconomics of HIV/AIDS. Washington: International Monetary Fund. Available at http://www.imf.org/external/pubs/ft/AIDS/eng/index.htm. Hydén, Göran (2007), ‘Governance and poverty reduction in Africa’, in publication in Proceedings of the National Academy of Sciences, USA, August. Hydén, Göran, Julius Court and Kenneth Mease (2004), Making Sense of Governance: Empirical Evidence from Sixteen Developing Countries, Boulder, C. Lynne Rienner Publishers. Krauss, K. (2005), Mobile populations: News – African health care worker shortage, Topic 3: The brain drain of health professionals from Southern Africa, 24 June, www.healthdev.org/eforums. McPherson, Malcolm, Hoover, Deborah and Snodgrass, Donald (2000), The Impact on Economic Growth in Africa of Rising Costs and Labour Productivity Losses Associated with HIV/AIDS, JFK School of Government, Harvard, August.

86 The Politics of AIDS Rau, Bill (2004), HIV/AIDS and the Public Sector Workforce, Family Health International and The Futures Group, http://www.fhi.org/en/HIVAIDS/pub/guide/publicsector. htm. Sankore, Rotimi (2006), How the Brain Drain to the West Worsens Africa’s Public Health Crisis, Pambazuka News 14 September, http://www.pambazuka.org/en/category/ comment/37062. Sengwana, M. and Quinlan, T. (2004), Review of studies of socio-economic impact of HIV/AIDS in sub-Saharan Africa. Durban, Health Economics and HIV/AIDS Research Division (HEARD) of the University of KwaZulu Natal, Durban. Uganda (2000), Baseline Survey of the Trends and Impact of HIV/AIDS on the Public Service in Uganda, Final Report. Ministry of Public Service, Kampala, December. Uganda (2004), Draft Public Service HIV/AIDS Policy. Ministry of Public Service, Kampala, October. Uganda (2005), Uganda National AIDS Policy, Final Draft (as submitted to Cabinet). Office of the President, Uganda AIDS Commission, Kampala, July. Uganda (2005a), Compendium of the Ministry Issues Papers at the Joint AIDS Annual Review 2005, GoU December. UNAIDS (2006), Report on the Global HIV/AIDS Epidemic, 2006. UNGASS & Toronto Report, available at http://www.unaids.org/en/HIV_data/2006GlobalReport/default.asp. UNDP (2005), Hoping and coping: a call for action – the capacity challenge of HIV/AIDS in least developed countries. New York, United Nations Development Programme and the Office of the High Representative for the Least Developed Countries, Landlocked Developing Countries and Small Island Developing States. Available at http://www.undp.org/hiv/docs/hoping_and_coping_final.pdf. UNFPA (2001), Strategic Options for HIV/AIDS Advocacy in Africa, authors A.E. Opubor, B. Egerö and O.M. Kumah. New York, June. UN (1991), The AIDS Epidemic and its Demographic Consequences, Proceedings of a UN/WHO Workshop, New York 13–15 December 1989, United Nations ST/ESA/SER.A/119. Way, Peter O. (2003), The future of adult mortality under the AIDS threat: Estimating and projecting incidence; projecting mortality with HIV/AIDS, Workshop on HIV/AIDS and adult mortality in developing countries, UN Population Division 8–13 September. WHO (2006), World Health Report, WHO, Geneva.

6 Multi-Sectoral Response to HIV/AIDS in the Context of Global Funding: Experiences from Uganda Edward K. Kirumira

Introduction Since the identification of HIV/AIDS in Uganda in 1982, the government has adopted a range of targeted interventions, particularly after 1986, which were eventually consolidated into a multi-sectoral national response with the creation of the Uganda AIDS Commission in 1991/92. First, the interventions started with an open policy towards the AIDS pandemic. Government decided very early on in the epidemic to chart an open policy toward AIDS and Uganda thus became the first country in the region to openly declare AIDS cases. Secondly, there was support by the international and bilateral donor agencies. Third, the level of AIDS intervention was at the national, district, institutional and community level. At the community level for example, AIDS control activities were implemented through various groups and institutions like the post-test clubs, community and religiousbased groups/organizations. Fourth, interventions also took a multi-sectoral approach both in terms of programming and coordination. The multisectoral approach was born out of the realization that the impact of the epidemic went beyond the domain of health and cut across all aspects of individual, family, community and national life. Fifth, at an individual level, the open declaration of HIV status, for example through the Philly Lutaaya Initiative (PLI)1 and others that followed, were a major breakthrough, especially in the fight against stigmatization of people living with HIV/AIDS. With the levels of required funding (perceived or actual) rising, coupled with what has become a highly congested and often contested scene of actors in Uganda’s response to the HIV/AIDS pandemic, the country is experiencing an increasing socio-political and economic challenge to programme coordination and monitoring (UAC 2005a). The ‘community– NGO–government–development partners’ nexus underscores the sociopolitical undercurrents in the coordination and management of the national response. 87

88 The Politics of AIDS Nsambya

Rubaga

Mbarara

Jinja

Tororo

Mbale

Lacor

Prevalence (%)

35 30 25 20 15 10 5 02

01

05 20

20

99

98

00

20

20

19

97

19

95

96

19

19

94

19

93

19

92

19

91

19

90

19

19

19

89

0

Year Figure 6.1 HIV prevalence among ANC attendees in sentinel sites located in major towns from 1989 to 2005 Source: Wabwire-Mangen et al. (2006).

Background to the HIV/AIDS epidemic in Uganda Ugandans have been living with HIV/AIDS pandemic since 1982 when the first clinical case of HIV/AIDS was identified from two fish landing sites, Lukunya and Kasensero in Rakai District. The disease has greatly affected the entire life spectrum of Ugandans. It has particularly had serious impact on the productive and reproductive age group between 15 to 45 years. Bearing in mind that the disease has been around for over two decades, the generation gap directly affected is stretched to those in their 70s. HIV/AIDS does not only impact on the infected but also on those affected by the disease particularly those who care for the sick and/or ultimately their dependants (Atekyereza and Kirumira 2004; WHO 2006). Figure 6.1 shows the trend of HIV prevalence in major urban sentinel sites from 1989 to 2005 (see also Table 6.1). The figure shows a peak around 1992 and a general declining trend until around 2000 when the prevalence tends to stabilize. Studies showing similar declining patterns in rural settings include Mbulaiteye et al. (2002). There also exists significant variation in the sero prevalence rates across geographic areas of the country. For example, according to data from the 2003 surveillance reports, Lacor Hospital in Gulu District recorded the highest prevalence of 11.9 per cent, twice the national average. The lowest rates of prevalence were recorded in Matany Hospital in Moroto District at 0.7 per cent. Overall, national figures show that prevalence has oscillated between 6.1 and 7 per cent for the period 2001 to date and therefore, despite the significant progress registered by Uganda in reversing the 30 per cent HIV sero prevalence rate of the early 1990s to the current 6 to 7 per cent, HIV/AIDS remains a formidable challenge to effective socio-economic development in the country.

Edward K. Kirumira 89 Table 6.1

Trends of HIV prevalence in Uganda since 1987

Period

Significant event description

1982 1987–8 1992 1995 1997 1998 1999 2000 2001 2004 2005

First AIDS cases identified in Uganda First national sero-survey Peak of infections (some urban sites with over 50%) Official announcement of decline in HIV prevalence Significant decline registered for the next four years

‘Stabilization’ of incidence and prevalence rates

Average prevalence rate [%] – 9.02 30.0 18.5 14.7 9.5 8.3 6.1 6.5 6.0 6.5

Source: MOH 2002: 5; UAC 2005b; AVERT 2006.3

HIV/AIDS national response coordination Coordination of the national response to the HIV/AIDS pandemic started in 1987 with the creation of the Uganda AIDS Control Programme (UACP) within the Ministry of Health. By 1990 it was increasingly recognized that the pandemic was not merely a disease problem and indeed could not be effectively coordinated from a purely medical perspective. In 1992 the Uganda AIDS Commission (UAC) was established by a Statute of Parliament as the national coordinating body for all matters related to HIV/AIDS. UAC was strategically placed under the President’s Office, outside of any particular line Ministry, underscoring the critical nature and multi-sectorality of the national response to the AIDS pandemic. The placement of UAC also signified the importance of the political factor both in the coordination and in the implementation of the HIV/AIDS national response. In addition, it was a recognition of the diverse actors in the AIDS scene and therefore the presence of diverse, if not divergent, interests and approaches to the AIDS pandemic.4 Table 6.2 presents a synopsis of what has become a highly congested scene of actors in Uganda’s response to the pandemic and certainly an increasing challenge to programme coordination, its monitoring and evaluation.

Internationalization of the HIV/AIDS funding and coordination mechanisms Partly due to the policy of openness, Uganda has been able to attract significant funding for HIV/AIDS activities. Five major funding streams in Uganda are worthy of note: namely, the Multi-Country HIV/AIDS Program for Africa

90 The Politics of AIDS Table 6.2

Stakeholders by Category

Type Research & academic institution Bilateral agency Cultural group UN agency PHA network Central government Civil society

Frequency Type 5 6 6 12 18 23 26

Private company District-based NGO International NGO Local government Faith based organisations (FBO) National NGO Community based organizations

Frequency 26 73 93 109 119 127 260

Source: Data collected from 903 out of 1231 registered stakeholders (72%) countrywide (UAC 2005c).5

(MAP), the Global Fund for AIDS, Tuberculosis and Malaria (GFATM), the Presidential Emergency Program for AIDS Relief (PEPFAR), the Bilaterals and Foundations/agencies, and the Regional Initiatives (UAC 2005b). Under the World Bank-funded Multi-Country HIV/AIDS Program for Africa (MAP-I), a contribution of US$50 million was made for a period three years. The projected level of funding for MAP-II6 is US$110 367 685, to finance only recurrent expenditure such as training, travel for supervision, monitoring and evaluation, technical support, drugs and medical supplies, equipment and minimal capital expenditure in the form of minor civil works such as minimal health facility upgrade (Adupa et al. 2005). MAP also sought to nurture and strengthen community HIV/AIDS initiatives (CHAI), with the aim of strengthening prevention and control activities of HIV/AIDS through community driven initiatives. Under the Global Fund, Uganda has obtained five approved grants from the GFATM for the three programme areas that are under the mandate of the Global Fund. Uganda’s programme of cooperation with the GFATM operates under a broad intersectoral National Coordination Committee (NCC) as the Country Coordination Mechanism (CCM), with the Ministry of Finance, Planning and Economic Development (MoFPED) as Principle Recipient for all the GFATM grants approved so far. The current programme support under the Presidential Emergency Programme for AIDS Relief (PEPFAR) is being implemented on a five-year planning cycle basis with the current cycle running from 2004 to 2009 with a budget estimated at US$1089 m. The thrust of the PEPFAR programme is prevention mainly through the Behavioral Change and Communication (BCC) strategy emphasizing the delay or total abstinence from sexual activity as a means of avoiding contracting HIV/AIDS. The recipients are FBOs, CSOs and government units. The grants range from 20 000–750 000 US dollars. Under the funding stream that includes bilateral, foundation and various civil agencies, we note for example DFID that has provided project support for special

Edward K. Kirumira 91

strategic interventions in service delivery and accountability, advocacy and empowerment over the last three years, averaging £6.2million per year. This will continue at £5.2million during 2005/06 and £3.0million sterling per year during the following two years. Irish Aid is currently implementing a three-year funding support programme of about US$ 6.4m, and DANIDA is providing support to the national HIV/AIDS response through contribution to the Ministry of Health drug budget and through direct budgetary support to various implementing organizations like The AIDS Support Organization (TASO), Straight Talk Foundation, Hospice, UNAIDS. Regional Initiatives have included the Great Lakes Initiative on AIDS (GLIA) in which Uganda is a major stakeholder. The GLIA comprises the six countries of Burundi, Democratic Republic of Congo, Rwanda, Kenya, Tanzania, and Uganda. GLIA was formed in Kampala in March 1998 and launched in Kigali in April 1999. A Convention establishing the Sub-regional Grouping was signed in Bujumbura on 27 July 2004. The World Bank is providing a grant of US$ 20 million to the GLIA for a four-year period. The grant was approved on 15 March 2005, and signed with GLIA partners in Washington on 14 April 2005. The countries are expected to make an annual member contribution of US$50 000 each. It is important to observe though that although the number of implementing agencies/players has grown exponentially over the last 15 years in Uganda, as shown in Table 6.2, the funding sources are narrowing to an ever so limited number of development partners and/or funding mechanisms. For instance PEPFAR and the Global Fund are supporting most of the faithbased organizations. On the other hand, a large portion of the financing of activities of the two major NGOs dealing with testing and care and support comes from USAID funds; that is, AIC (over 80 per cent) and TASO (approx. 60 per cent).7 This notwithstanding the fact that both organizations, in the last five years, have experienced rapid growth evidenced in opening branch offices in varied parts of Uganda.8 To appreciate the politics of coordination and management of the HIV/AIDS national response, one must of necessity comprehend the funding mechanisms in the country.

Internal or external locus of HIV/AIDS coordination? With the observed increase of actors, narrowing of funding sources, and increase in volume of funding, the AIDS issue has increasingly become much more than a health issue; much more than a prevention issue, it has actually become a test of governance (see also Chapter 7). Each of the funding mechanisms, although loosely linked to the overall coordination oversight of the Uganda AIDS Commission, has evolved its own management and coordination structures. In due course, the overall national coordinating mechanism has essentially adopted a ‘project mode’ albeit using existing government systems and processes. The National Coordination Committee

92 The Politics of AIDS

is officially responsible for the GFATM funds, the UAC responsible for the overall coordination, and all these loosely serviced by the National Partnership Forum that sits under the stewardship of the Uganda AIDS Commission. The World Bank-funded Multi-Country HIV/AIDS Program for Africa (MAP-1) is coordinated under the Uganda AIDS Control Project. PEPFAR funds, on the other hand, continue to be directly coordinated through the US Embassy. In 2002, government had also established an Inter-Ministerial Committee (IMC) in 2002 to provide high level policy and political oversight. Taking the GFATM as an example, it has been reported that far too often the varied Committees within the Country Coordinating Mechanism (CCM)9 have been presented with decisions that had already been made at higher levels rather than issues for debate and decision making. This has led to a significant number of the substantive membership simply stopping attending in person and preferring delegating to more junior officers. Indeed the assessment report of the performance of the Global Fund noted that in spite of the publication of the detailed Procedures Manual of the National Coordination Committee (NCC) in 2004, a general lack of awareness of the actual role and functions of the NCC even among some members of the Committee pertained (UAC 2005c). The lines of reporting and accountability within the Uganda Global Fund structures still remain unclear. It was noted that neither the Ministry of Health inter-disciplinary and multi-sectoral Area Teams that regularly mentor and supervise district level implementation activities (including district level public/private partnerships), nor the Offices of the District Directors of Health Services were involved in the selection of grantees and sub-grantees or the monitoring of performance of the latter. Another example is the situation pertaining with the PEPFAR funds. The day-to-day management of PEPFAR is undertaken by a unit within the US Embassy that is accountable directly to the US Ambassador. PEPFAR has so far been considered as off-budget and not discounted against the health sector budget, a situation that may already have changed for the worst as far as the health sector budget ceiling is concerned. Indeed both the PEPFAR and GFATM funding mechanisms have heightened the debate on strategy options for the national response with ARV and ABC proponents often seeking political support and greater influence in the coordination of the pandemic as reflected in the National Strategic Framework 2000/1–2005/6 (UAC 2004). Strong lobbies of each do exist in the current debate as the country prepares its new National Strategic Framework 2007–2011 and the Monitoring and Evaluation Framework 2006/7–2010/11. In the statement issued jointly by the Government of Uganda and the GFATM Secretariat Team (led by Brad Herbert), on the period of the Global Fund suspension, it was observed that: The interim period is also an opportunity for all stakeholders to re-examine the grant structures and objectives and to seek to realign some

Edward K. Kirumira 93

activities so as to harmonise with other programs in the country. The CCM (Country Coordinating Mechanism), which is to be strengthened by measures including personal representation by the Permanent Secretary of the MoFPED,10 is expected to play a lead role in this. Uganda government’s Ministry of Finance and Economic Development has added its voice from several perspectives. It has been argued that ‘the lack of incentive to limit donor project expenditures at a sectoral level has placed upward pressure on the aggregate fiscal deficit, which in turn has complicated monetary policy, and especially exchange rate management’ (MoFPED 2004). Secondly that project aid often has political strings attached and it may promote local business interests of the donor, fuel corruption, and distort public funds from social services to project management, in place of the real development needs of the recipient. The third argument has been that of lack of ownership and oversight over the funding mechanisms and allocations of donor funding (e.g. PEPFAR) and the observation that the project support profile has leaned heavily on non-direct programme activities. For instance, 68 per cent of the funds have gone to what the Ministry term as non-Health Sector Support Programme inputs such as Technical Advisory, capacity building and project overhead.

Conclusions Coordination targets harmonization – of both programmes and funding mechanisms. The fact that HIV/AIDS is addressed in all sectors by different stakeholders at all levels with support from various sources makes coordination a complex issue. Coordination entails facilitation, negotiation and partnering to accommodate everyone while recognizing capacities and mandates (UAC 2005a). In an African context, the complexity is further aggravated by the globalizing influences of bilateral, multilateral and industry funding environment within which nation governments operate. Establishing appropriate, less politically prone AIDS Coordination structures and systems at national and district level remains a huge challenge in Uganda’s way forward in containing the epidemic and taking advantage of the funding levels that the country has enjoyed so far. This is especially important when taking into consideration the projected stagnating prevalence and incidence rates, where the country has to think seriously of reorienting its approach in the new National Strategic Framework (Wabwire-Mangen et al. 2006). Goal 3 of the current Uganda National Strategic Framework (2000/ 1–2005/6) relates to strengthening the national capacity to coordinate and manage the multi-sectoral response to HIV/AIDS. Strategies and activities have included issues of institutional arrangements, capacities, roles and

94 The Politics of AIDS

responsibilities; coordination mechanisms; and management arrangements related to implementation of the National HIV/AIDS programme. At the various programmatic levels and in the different sectors, uneven progress was found in planning for coordination and institutional arrangements for programme implementation (UAC 2005c). In addition, therefore, to guiding the formulation of policies for the national response to HIV/AIDS, the UAC is faced with a major challenge of facilitating and coordinating planning and monitoring related to the national response to HIV/AIDS; and, coordinating the mobilization and allocation of resources for the national response and monitoring their utilization. In this respect the country is emphasizing the coordination principle of the ‘three ones’11 and, indeed during the 4th National HIV/AIDS Partnership Forum (30 January 2006), it was reiterated that ‘as the number of stakeholders and amount of funds increases, there is need for focused coordination. . .the need to harmonize and share information on resource mobilization and management becomes critical now than ever before.’ It has been strongly suggested, for example, that the Health Policy Advisory Committee of the Uganda Health Sector Wide Approach is perhaps the most suitable option for subsuming the functions of the NCC/CCM as it is a well-established high-level strategic national coordination structure embracing all three target diseases within a clearly defined national sector strategic frame, the Health Sector Strategic Plan, and, operates through the national budget and management systems. Under this option, the GFATM and other funding streams will be automatically brought into the Health SWAp, opening the way for including as much as possible donor resources in the budget support mechanism, reinforcing of the principle of ‘3-Ones’, and ensuring mutual complementarity in the roles of various stakeholders – local and international – that are involved in the HIV/AIDS national response. Subsequent Joint AIDS Review meetings in Uganda have emphasized that the Action Plan that should evolve must drive implementation, improve oversight, emphasize results, and provide a solid basis for the alignment of multilateral institutions’ and international partners’ support; within related efforts to progressively strengthen the next National Strategic Framework and root it in broader development plans and planning processes. Secondly, that the respective Action Plans of individual actors should clearly delineate roles and responsibilities of national stakeholders, multilateral institutions and international partners – who does what, when, and where (UAC 2006b). The point is made clear that as long as the majority of funding for the HIV/AIDS national response continues to depend on development partners, the management of the epidemic assumes, in a significant measure, the ability of the country to appreciate and manage the socio-political relationship that comes with the funding and the capacity to coordinate the global, state and civil society demands, interests and expectations in the fight against the pandemic.

Edward K. Kirumira 95

Notes 1. Philly Lutaaya was a popular Uganda musician based in Sweden who became the first public figure to declare publicly that he was HIV+. He also composed a number of chart-topping songs on AIDS. The PLI was thus designed around the concept of disclosure. 2. However, some sources quote 10%. 3. These are overall antenatal clinic and not general population prevalence rates. See also Kirumira (2003) for a discussion on declining rates. 4. This factor culminated in the formation of the National Partnership Forum in 2001 that brings together different categories of constituencies (stakeholders), with UAC as the Secretariat. 5. An earlier inventory of agencies with HIV/AIDS activities and HIV/AIDS interventions in Uganda is contained in AMREF-Uganda (2001) 6. MAP-II programme duration is expected to run from 1 July 2006 to 30 June 2009 with Uganda AIDS Commission as the Executing Agency. 7. AIC is the AIDS Information Center which is the oldest and largest counselling and testing NGO, while TASO is The AIDS Support Organization with a major mandate of care and support for HIV/AIDS affected persons. 8. AIC for example has expanded from one office in Kampala in the early 1990s to eight branches spread in Central, Western, Northern and West Nile regions. 9. A committee of 27 representatives from government, civil society organizations, faith based organizations and the private sector. 10. The Ministry of Finance, Planning and Economic Development (MoFPED) was the principal recipient, on behalf of the Government of Uganda, for the Global Fund. 11. The “three ones” refer to: One agreed national framework of action to provide the basis for coordinating work of all partners; One national AIDS coordinating authority with a broad-based multi-sectoral mandate, and One country-level monitoring and evaluation system.

References Adupa, R.L., W.L. Kirungi and E. Sekatawa (2005), Preparation of a Project Proposal for Supporting the National HIV/AIDS Response under Phase Two of the World Bank Multi-Country AIDS Programme. Kampala: UAC Synthesis Report. AMREF-Uganda (2001), Inventory of Agencies with HIV/AIDS Activities and HIV/AIDS Interventions in Uganda: A Review of Actors, interventions, Achievements and Constraints relating to the HIV/AIDS Challenge in Uganda. AMREF-Uganda: Uganda AIDS Commission Secretariat. Atekyereza, P.R. and E.K. Kirumira (2004), ‘The Impact of the AIDS Epidemic on Families and Family Coping Strategies in Uganda’, Research Review Supplement 15: 33–44. AVERT (2006), HIV and AIDS in Uganda. http://www.avert.org/aidsuganda.htm. Kirumira, E.K. (2003), ‘HIV/AIDS Incidence and Prevalence: Reality or Myth?’, In B.P. Tersbøl (ed.) Proceedings from the Seminar Gender, Sexuality and HIV/AIDS – research and intervention in Africa. Copenhagen: University of Copenhagen. Mbulaiteye, S.M., C. Mahe, J.A. Whitworth, et al. (2002), ‘Declining HIV-1 Incidence and the associated Prevalence over ten years in a rural population in south-west Uganda: A Cohort Study’, Lancet, 360: 41–6.

96 The Politics of AIDS Ministry of Finance, Planning and Economic Development (MoFPED) (2004), Budget Working Paper. Kampala: MoFPED. Ministry of Health (2002), HIV and AIDS Surveillance Report. Kampala: Ministry of Health. Uganda AIDS Commission (2004), The Revised National Strategic Framework for HIV/AIDS Activities in Uganda 2000/1–2005/6: A Guide for all HIV/AIDS Stakeholders. Kampala: UAC. Uganda AIDS Commission (2005a), The 3rd HIV/AIDS Partnership Forum: Reporting the Present, Preparing the Future – Forum Report. Kampala: UAC. Uganda AIDS Commission (2005b), Annual HIV/AIDS Status Report, July 2004–June 2005. Kampala: UAC. Uganda AIDS Commission (2005c), National Mapping of HIV/AIDS Interventions in Uganda (Phase II). Kampala: UAC. Uganda AIDS Commission (2006a), Report of the 4th National Partnership Forum. Kampala: UAC. Uganda AIDS Commission (2006b), The Joint AIDS Review Report. Kampala: UAC. Wabwire-Mangen, F., A. Opio, N.N. Tumwesigye, N. Asingwire and P. Bukuluki (2006), ‘Accelerating HIV prevention in Uganda: The road towards universal access drivers of the HIV/AIDS epidemic and effectiveness of prevention interventions in Uganda: A Synthesis Report’. Kampala: UAC. World Health Organization (2006), World Health Report 2006: Working Together for Health. Geneva: WHO.

7 Governance Matters for AIDS: But what about the politics? Lessons from South Africa and Uganda Peris Jones and Kjersti Koffeld1

Introduction ‘Governance’ is ordained in contemporary debate and policy as decisive for overcoming the persistent problems of international development. The Commission for Africa, for example, in its identification of governance as laying no less than ‘at the core of all of Africa’s problems’ (Commission for Africa 2005: 23–5) reconfirms something of a zeitgeist. Similarly, a host of development agencies appear to embrace the concept as integral to their work and objectives. The World Bank, for instance, has regarded ‘good’ governance for a number of years as being closely connected to securing economic development. The UNDP relates it to fostering human development placing greater emphasis upon democratic governance. Somewhere in between these poles sits the aforementioned Commission for Africa. Closer to Africa itself, ‘democracy and good governance’ are identified by the New Partnership for Africa’s Development as key to eradicating poverty and promoting socio-economic development (UNDP 2002; Commission for Africa 2005; NEPAD 2002). With so many competing interpretations it would appear reasonable to enquire why governance has become so popular. In short, what exactly do we want it to do: enhance neo-liberalism, and/or secure fundamental democratic freedoms, and/or, enable efficient outcomes in policy implementation? Moreover, of particular interest, what specific dimensions of ‘governance’ can be identified as more likely to lead to efficient and equitable policy outcomes: leadership, efficient bureaucratic structures and incentives, civic engagement or perhaps some combination of these (Putnam 1994). Otherwise, for all the heat of governance policy statements and minimalist institutional reforms and capacity-building, there still remains little light shed upon the concept. One might therefore be forgiven for thinking that the popularity of governance is precisely because it is ‘the kind of polite and non-threatening epithet that makes for easy conversation in any gathering of African and international leaders’ (Booth 2005: 494). 97

98 The Politics of AIDS

The AIDS epidemic itself is increasingly cast within a frame of political analysis and understanding that in turn can throw into sharp relief the complex nature of governance. After all, mixed and tardy state responses have been an unfortunate characteristic of the epidemic. This has prompted civil society AIDS activists – and both UNAIDS (1996) and the UNDP (2002) – to identify the critical bearing democratization has upon enabling successful governance of the epidemic. One leading activist has suggested that ‘What should have been learned from the last decade is that on almost every level HIV/AIDS is an expression of a crisis of politics and accountable and democratic governance that faces our world’ (Heywood 2004). But 20 years into the epidemic it is somewhat disappointing therefore to note that the relationship between AIDS and governance is ‘not an underresearched area, it is one which has barely been touched at all’ (Barnett and Whiteside 2002: 299). Where interest has been shown in the relationship between HIV/AIDS and governance, it has tended towards first examining how government and formal democratic capacity is eroded by AIDS (de Waal 2003; Mattes 2003; HEARD 2003). While notable exceptions highlight one or more political components of it that shape policy frameworks and responses (Patterson 2006; Jones 2005; Friedman and Mottiar 2005; Heywood 2005; Parkhurst and Lush 2004; Putzel 2003a, 2003b; Parkhurst 2001, 2002), nonetheless, there has been a paucity of attention to governance as multidimensional and occurring simultaneously across a range of different arenas. To date one of the most advanced analyses is provided by Patterson (2006), who seeks to locate state AIDS policies within a broader understanding of the nature of the state. In this she identifies four key characteristics of the state in Africa that are considered to have a critical bearing upon AIDS policies: the degree of centralization (in terms of the degree of executive and presidential power); the degree of neo-patrimonialism (at a basic level of definition, corruption); the degree of security (political stability); and overall the degree of state capacity (measured crudely in terms of gross national product). Patterson uses these characteristics as a foil to problematize the unevenness of AIDS policy responses. So, for example, whereas on the basis of these characteristics one would expect a middle-income country like South Africa to perform well on AIDS in comparison to most other African countries, it is apparently out-performed by Uganda, and more so Rwanda, to name but two countries, in terms of their ‘AIDS Program Effort’.2 Patterson’s findings are useful in problematizing explanation of AIDS policy and programmes. Not only does she bring into focus the critical role of power, representation and political institutions in understanding responses to the epidemic, but also the inherent complexity of explaining state responses. Such analysis provides an important backdrop to assessing what it is that enables an effective response to HIV/AIDS. The chapter attempts to

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contribute further to this end by using ‘governance’ to provide an even more integrated and joined-up approach. It does so, first, by identifying, and then, second, interrogating which components of governance are particularly significant in the context of AIDS. It does so by comparing and contrasting two country responses in depth, namely, South Africa (see also Chapters 9–12) and Uganda (see also Chapters 6 and 8). In conclusion, the chapter suggests the critical need for prevailing understandings of governance to be expanded upon to incorporate a politics of accountability that is essential to testing and changing how governance responds to HIV/AIDS.

Governance theories Governance theory has gained major popularity across social science disciplines and both urban and international development discourse. Although there are major differences in how governance as a concept is used within these fields, there are also some similarities. Common to analysis across the global North and South and also across left and right of the political spectrum, are renewed conceptions of governance as something more than just government (Kjær 2004: 188–9). During the 1980s the public sector in the global North experienced major restructuring (often labelled the ‘new public management’ reforms), involving decentralization, privatization, and the transfer of private sector management principles to the public sector. The result was an increasing number of actors constituting what has been termed ‘policy networks’ within public administration (Castells 2000; Hajer and Wagenaar 2003; Rhodes 1997). Rhodes defines governance as ‘self-organizing, interorganizational networks that are characterized by interdependence, resource exchange, rules of the game and considerable autonomy from the state’ (Rhodes 1997: 15). Leaving aside the particular focus upon ‘network management’, there is a bigger sense in which ‘governance refers to a broader process of managing the rules by which public policy is formulated and implemented’ (Kjær 2004: 57). It is regarded as providing ‘some standard against which to examine behaviour in the public sector, and analyse what has happened’ (Peters 2000: 38). This notion of ‘managing the rules’ is elaborated upon by Hydén (1992) who suggests it can be ‘defined as regime management, [whereby] governance is concerned with how rules (or structures) affect political action and the prospects for solving given societal problems’. These rules apply to the political arena within which state, civil society and economic actors operate and interact to make authoritative decisions, setting the terms and conditions under which policies are made and implemented. A critical measure of the quality of governance is therefore how well the various actors handle these rules (Hydén, Court and Mease, 2004b; Hydén, 1999). The added value of such an analysis is that governance is portrayed as multi-dimensional

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occurring across not one but several arenas: ‘civil society’ (channelling participation into public affairs), ‘political society’ (channelling ideas and interests into policy proposals), ‘government’ (where policies are made by government institutions and government has the most important role in putting rules in place), ‘bureaucracy’ (policy implementation), ‘economic society’ (state–market relations) and the ‘judicial system’ (structures to deal with disputes and conflicts). Reading governance in this way safeguards against simplistic and one-dimensional explanations of ‘good governance’. For example, while some mention is made of the role of accountability, the principal author of the ‘Blair’ Commission report tends to reify ‘capacity’ issues or administrative machinery as key to governance (Vallely 2005: 6). However, reference to how bureaucracy relates to the other arenas will remind us of the critical role of politics in enabling or disabling ‘capacity’ in the first place. This is also what Patterson has in focus, in that while identifying statecentric characteristics, her analysis extends to looking in particular also at civil society and donor relations with the state. The approach in the chapter is not to detract from Patterson’s important contribution but, rather, the aim is to embolden it by using governance as an even more ‘joined-up’ and inter-relational analysis of state responses to AIDS. Beetham, for example, stresses the importance more generally of not seeing institutions as ends in themselves, but rather as means to a (democratic) end (Beetham 1999). Many observers greeted the collapse of communism and subsequent ‘Third Wave’ transitions to democratization – in Eastern Europe and parts of Africa in particular – as a triumph of western liberal democracy. Donor agencies ushered in an era of ‘good governance’ characterized by aid tied to minimal institutional and judicial reforms and elite negotiations. Less triumphalist accounts are generally more critical of the quality of democracy in these transitions describing it as elitist and formal rather than popular and substantive (Grugel 2002). The UNDP, for example, talks about democratic governance, rather than governance per se. It sees this as a critical dimension in that democracy should be ‘By the people and for the people’ (UNDP 2002: 52) and that it is ‘first and foremost about the idea that politics is as important to successful development as economics’ (UNDP 2002: v). But that said, moving beyond rhetoric requires active support in constructing concrete mechanisms of vertical accountability, that is, the ways in which public officials and government practice are actually scrutinized and sanctioned by ‘the people’ (Jones and Stokke 2005). As the impact of the HIV/AIDS pandemic becomes ever more apparent in sub-Saharan Africa, questions concerning state performance and responses towards the epidemic are paramount. Hydén indicates how governance is tested in situations ’where regime changes are needed to meet new demands or deal with new problems’ (Hydén 1992: 14). There is arguably no bigger test of governance in the current era than that posed by the devastation of the HIV/AIDS epidemic.

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Governance in the context of AIDS: Uganda and South Africa Both South Africa and Uganda have undergone major political transitions in recent decades. While South Africa emerged as a multi-party democracy in the post-apartheid era, Uganda became a non-party system under the leadership of President Yoweri Museveni and the National Resistance Movement (NRM) by the end of the civil war in 1986. The points of departure for consolidation of power differed substantially between the two countries. Whereas South Africa had a well-functioning – albeit racially skewed – infrastructure, Uganda was a war-torn society after 20 years of civil war and internal political strife. Furthermore, at the time of transition, South Africa was among the strongest economies in Africa, while Uganda was among the poorest countries in the region. So far close to one million people have lost their lives to AIDS related diseases in Uganda, resulting in more than 1.7 million orphans (Hsu 2004: 19; Tveit 2004: 11). In South Africa an estimated 5.3 million people are living with HIV/AIDS; the country thus has the largest number of individuals infected in the world (UNAIDS 2004). Yet the unfolding trajectories of the epidemic and the political responses differ substantially between the two countries. A major challenge has been to ensure that the epidemic is on top of the political agenda, and is considered to be a national priority. In this the two countries differ sharply, and a correlation is often portrayed between pro-active leadership and Uganda’s apparently dramatic decrease in HIV prevalence. In other countries, such as South Africa, according to de Waal, the generally insufficient and tardy response can be traced to the general regressive dynamics of governance, institution building, state-formation and economic growth in the region (de Waal 2003: 14–17). Other scholars point to how more generally the lack of political action may in itself have accelerated the pandemic (Joseph 2003: 163; Layman 2003). That said, the apparently steep decline in prevalence figures in Uganda has, however, been challenged and is regarded by some observers as still in double figures nationally (see Parkhurst 2002; Guardian 23 September 2004). A lot of the decline might also be accounted for by a high number of AIDS deaths. In 2002 South Africa and Uganda ranked as 119th (medium human development) and 146th (low human development) respectively on the UNDP’s Human Development Index, while Freedom House ranked South Africa as ‘Free’ and Uganda as ‘Partly Free’ in 2004 (Freedom House 2005; UNDP 2004b: 141). Given a link between general governance and governance in the context of HIV/AIDS, and adding the argument that sound governance may be the missing key for solving persistent development problems in the region, the assumption follows that South Africa has a better starting point than Uganda to overcome an HIV/AIDS epidemic. The question remains, however, whether there is a positive causal link between general governance performance and governance in the context of HIV/AIDS. The subsequent

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sections will give a thorough analysis of the two countries’ respective epidemics and the political responses to the disease.

What characteristics? What characteristics may therefore constitute good governance in the context of HIV/AIDS? The Governance and AIDS Programme (GAP) at the Institute for Democracy in South Africa (IDASA) identifies participation, accountability, efficient and fair institutions, rule of law, gender-sensitivity, openness, transparency, and responsiveness, as particularly significant in the context of AIDS (IDASA 2004). Some integral questions can therefore be used as the basis of what governance in the context of HIV/AIDS should consist of:

• Institutions; are there institutions in place to coordinate the political response?

• Participation; to what degree has the civil society and PLWAs had the possibility of participating in the process of policy development?

• Accountability; to what degree can the government be held accountable towards the citizens in its HIV/AIDS work?

• Transparency; how transparent has the political process been, how easy is it to get an insight into what is happening?

• Responsiveness; to what degree does the government respond to the citizens’ needs and aspirations?

• Effective political leadership; how has the leadership handled the epidemic? • Rule of law; are there laws and regulations in place which secure the rights of PLWAs?

• Openness; to what degree has the political debate been characterized by openness? Many of these features overlap with Hydén’s (1992; 1999) governance ‘rules’ and institutional arenas mentioned earlier. However, additional components in the context of HIV/AIDS that reflect the particularities of the disease such as its social stigma include, for example, ‘openness’. As such these questions serve as useful guidelines when comparing the two countries’ respective cases. Institutions Institutions play an important role in a political response to HIV/AIDS. They are a central means for coordinating the response from various actors (both governmental and non-governmental) and facilitating participation of stakeholders. Throughout the history of HIV/AIDS in South Africa, there have been a number of institutional arrangements in place, which have often replaced each other following reviews of existing programmes and plans.

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South African National AIDS Council (SANAC) was established in 2000 as a result of the 1997 review of the National AIDS Plan, and is meant to be the embodiment of the partnership between government and civil society. The establishment of such a body was much anticipated, but has since been heavily criticized for being both ineffective and inefficient in its work (Chirambo 2004; Nattrass 2004; Strode and Grant 2004; Van der Vliet 2004). South Africa is commonly acclaimed for its good policy making, while the ability to implement policies and effectively operationalize governance has been found wanting (Landsberg and Mackay 2004: 14). This seems to be the case with SANAC, although there are policies in place prescribing the Council’s role and work, five years after its inception it is still not considered to play the lead role it was intended to. An internal evaluation of the Council recognizes weaknesses within SANAC (Chirambo 2004). This also reinforces Patterson’s (2006) point that while Uganda is much more centralized than South Africa, the latter tends to centralize policies when it comes to HIV/AIDS, which renders them more under Executive and Presidential influence. The Uganda AIDS Commission (UAC) was established in 1992 as part of the multi-sectoral approach to HIV/AIDS adopted in 1990/91. The Commission was set up to manage and coordinate the political response to HIV/AIDS, and has since been portrayed as a template for similar bodies in the region (Putzel 2003a; Strode and Grant 2004: 11). In different evaluations of the Commission the tendency to duplicate the work of other ministries, and weak coordination on district level have been highlighted as serious flaws of the Commission (Putzel 2003a: 30; UAC 2000: xl-xli). Uganda has been praised for the timeliness of its response, and the establishment of the UAC is an important feature of this. However, there seem to be differing views among actors working in the field about how successful the UAC has been. Both South Africa and Uganda have recognized the need to establish institutions coordinating their response to the epidemic and HIV/AIDS activities. However, while SANAC has been heavily criticized since it’s beginning, the UAC is generally held in high esteem. The following paragraphs will touch upon some of the reasons for this by further analysing important features of governance in the context of HIV/AIDS. Participation Participation of civil society is regarded as an important feature of successful HIV/AIDS interventions (Hsu 2004: viii). One of the major findings of the review of South Africa’s national AIDS plan conducted in 1997 was specifically the need for more comprehensive multi-sectoralism in the political response to the pandemic. HIV/AIDS should no longer be considered to be relevant only for the health sectors; it had to be mainstreamed into all sectors and departments. The fact that the AIDS Plan and subsequently the HIV/AIDS and STDs Programmes were set up within the Department of Health downscaled rather than highlighted the urgency of dealing with

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the epidemic immediately. This undermined the potential for an effective multi-sectoral coordinated response. Analyses of the South African case point to this as one of the serious flaws of the political response (Nattrass 2004: 43). When set up in 1986, the AIDS Control Programme (ACP) in Uganda was also established within the Ministry of Health. But ever since ACP’s formation, there has been a broad involvement of different actors in the Programme. However, because the Health Sector did the coordination, the epidemic continued to be addressed almost exclusively as a health problem. Consequently, there was a generally inadequate response and participation by other organizations in the public and private sectors, which felt that AIDS prevention and control was not their responsibility. Following the review of ACP in 1988 it was therefore recognized that a broader involvement of different sectors was needed. This paved the way for Uganda’s multi-sectoral approach. Uganda has since often been cited as the leading example of a multi-sectoral response in sub-Saharan Africa (Strode and Grant 2004: 11). In 2001 more than 700 non-governmental agencies and organizations were involved with HIV/AIDS activities in the country, while separate sectoral ACPs had been set up in 13 ministries by 2000 (UAC 2000). The founding of SANAC in 2000 came as a result of the Strategic Plan 2000–2005, in which the council is given a central role as the embodiment of the partnership between government and civil society. SANAC is being heavily criticized, however, because of its composition. Representatives from government sectors (16 in total) dominate SANAC while there is only one NGO representative to represent the 600-plus organizations involved with HIV/AIDS work (van der Vliet 2004: 58). Scientists and researchers are not recognized as a sector and are therefore not represented, while traditional healers are the only representatives from the medical profession.3 The impression has been created that the council is not an independent body and that the government regards itself as the key sector in the response to the epidemic. Furthermore, it has taken responsibility away from other sectors (Strode and Grant 2004: 24, 37–8). Representatives from NGOs and AIDS activists feel marginalized, both within the council, as well as in the process to become part of it. The selection process is being steered by the government, and it appears that the process is quite biased. A well-known example is the fact that SANAC includes no representative from the Treatment Action Campaign (although one of its leaders is part of SANAC in a sectoral capacity – legal and human rights representative), one of the most active and visible organizations in the AIDS movement in South Africa (van der Vliet 2004: 58). There is a general sentiment within civil society organizations that as long as one does not criticize the government, one is taken on board. If organizations are critical, on the other hand, it is unlikely that they will be consulted and invited to take part in the process ( Jones 2005). In addition, the council’s lack of mechanisms to facilitate interactions with non-members is another element in that: ‘The private sector, donors,

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organizations, NGOs and CBOs can only engage with SANAC through their sectoral representative, if they have one. There is no other structural mechanism for allowing such groups to influence the agendas of meetings or the work of SANAC’ (Strode and Grant 2004: 25). Most recently, the South African government actively excluded both the Treatment Action Campaign and also the AIDS Law Project, in spite of the in support from UNAIDS among others, from its country delegation at the 2006 United Nations General Assembly Special Session on HIV/AIDS. The issue is just one of many illustrating the polarized nature of state–civil society relations in South Africa. The UAC was set up in 1992 to coordinate, oversee and plan HIV/AIDS prevention and control activities throughout Uganda. It thereby plays an important role in policy formulation as well. The President appoints members, and at the moment the UAC consists of a total of 18 members including a full-time chairperson. Civil society organization have since the beginning of the response to the epidemic been referred to as partners by the government (Tveit 2004: 67). This is also reflected in the composition of the UAC, as a number of members are drawn from various CSOs. Also faith-based organizations and religious leaders play an active role in the Commission. This is of particular importance, seeing as such organizations wield enormous influence in Uganda (USAID 2002: 6). PLWAs furthermore have a central place in the UAC, and are in general included in the development of HIV/AIDS policies. High-profile NGOs such as The AIDS Support Organization (TASO) and the National Community of Women Living with HIV/AIDS in Uganda (NACWOLA) have since their inception, in 1987 and 1992 respectively, addressed and advocated the special needs of PLWAs. Such organizations have made significant contributions to ensuring that PLWAs are taken on board in policy formulation (Tveit 2004: 68; USAID 2002: 6). Throughout the year, meetings are organized between the UAC, NGO representatives, and the government and development partners. This facilitates policy input from the various stakeholders as well as interaction between them. The mode for appointing members to the Commission can be criticized however. Given that it is the President who selects the members, it is quite likely that his personal preferences affect the appointments. As long as the President has a high personal interest and engagement in overcoming the epidemic, this may not constitute any problem. The situation may change, however, depending on the person in office. It can therefore be argued that a more objective selection process where more people are involved is a necessary measure to institutionalize the process. In addition to SANAC and the UAC operating on national level, both bodies have also established sub-divisions on lower district and local levels. Decentralization is generally considered an important means to involve the broadest range of actors possible. Provincial AIDS Councils (PACs) were established in line with recommendations of the Strategic Plan 2000–2005 in all nine provinces in South Africa. Membership of the PACs would be

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similar to that of SANAC, and their mandate was to coordinate the provincial multi-sectoral approach with emphasis on districts, municipalities and communities. In spite of clearly defined terms of reference,4 the PACs have not become the central actors they were intended to be (Strode and Grant 2004: 15). There is a general feeling that the people working within the PACs do not have a clear understanding of either their own, or the PACs’ roles. This evidently undermines the legitimacy of the structures, and NGOs working in the field tend to perceive the PACs as ineffective. In Uganda, District AIDS Coordination Committees (DACCs) were established by the UAC in 1992. The primary role of these committees was to coordinate the response to HIV/AIDS in the then 39 districts, and contributed to the general decentralization of government programmes (Tveit 2004: 63; UAC 2002b). AIDS committees were in some districts also formed at subcounty, parish and village levels. The District HIV/AIDS Committees (DHACs) replaced the DACCs following a review of the HIV/AIDS coordination in 2001, given that DACCs did not produce expected outcomes due to financial constraints. DHACs are constituted by a broad membership, including all Heads of Departments, PLWAs and local and international NGOs (UAC 2002b). The committees have thereby effectively contributed to a broader involvement of non-governmental actors. Both South Africa and Uganda have clear policies concerning involvement of a wide range of actors in their respective HIV/AIDS response coordinating bodies. Despite this, it seems evident that Uganda to a greater degree has succeeded in taking all sectors and NGOs on board in the policy formulation (Putzel 2003b; Parkhurst and Lush 2004). While South Africa’s civil society flourished in the apartheid era in the context of civil mobilization and resistance to the state, the NGO community weakened after 1994. Many senior staff and leaders took positions in the new government, or, were to some extent co-opted through providing subcontracting services to government. The vigorous AIDS discourse in the country has seen a re-awakening of civil society, though, which has responded in a concerted and energetic fashion. However, the political leadership has been reluctant to accept criticism from the NGO community and has denied them an active part in policy formulation. Uganda’s more inclusive drive also reflects the urgency with which Museveni regarded control of the epidemic as key to security and stability in the country (see Patterson 2006). Accountability If there are no mechanisms in place facilitating citizens’ participation, accountability becomes harder to achieve. When looking at accountability as a feature of South Africa and Uganda’s governance of the HIV/AIDS epidemic, there are at least two possible angles. First, the question on internal accountability: are the main coordinating bodies (SANAC and the UAC respectively)

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accountable to anyone? Secondly, are there institutional arrangements in place, such as elections, which can secure external accountability towards citizens if decision-makers fail to fulfil their promises? When SANAC was established in 2000, it was set up with a secretariat within the Department of Health. The secretariat was later moved out in order to increase the Council’s independence (Strode and Grant 2004: 22). However, with its structure being dominated by government representatives, the Council is still not perceived as an independent body. Adding to this is the fact that ‘SANAC is not accountable to anyone; it does not report to any structure and its minutes and procedures are kept confidential’ (Strode and Grant 2004: 23). This is identified as one of the most serious flaws of the country’s governance of the HIV/AIDS epidemic (Chirambo 2004). If SANAC had been made a statutory body, and thereby accountable to the parliament, it is probable that the Council could have played the leading role it was intended to in South Africa’s fight to overcome the pandemic. Instead, there are no existing means at the moment to hold SANAC accountable for its (in)actions or to dismiss any of its members. An Act of Parliament established the UAC as a statutory body in 1992. Because it is placed in the President’s office, it is accountable to the President and the government. Furthermore, as the UAC regularly organizes conventions and meetings where stakeholders have the opportunity to influence and criticize the Commission’s work, there are real opportunities for holding the UAC accountable for its doings. It can be argued, however, that since the UAC’s members are appointed by the President, the institutional arrangements would have been further improved by making the Commission accountable to the Parliament, rather than to the President himself. Free and fair elections are seen by many to be the ultimate means to ensure that decision-makers take responsibility for their actions. This is the arena where the public is given a chance to judge the political leadership’s management of a state’s affairs. South Africa has since its transition in 1994 been a multi-party democracy with elections held every five years. The Independent Electoral Commission (IEC) declared both elections in 1999 and 2004 as free and fair. While high levels of violence characterized the run-up to the first multi-racial elections in 1994, the elections in April 2004 were described as pleasingly ‘dull’ (Economist, 2004). Although South Africa is correctly construed to be a multi-party democracy, the ANC remains the heavily dominant political force. And, in light of ineffective and poorly supported opposition parties some regard the ANC’s secure grip on power as an unhealthy development (Landsberg and Mackay 2004: 14). However, the elections do provide the public with the opportunity to contest and question the leadership’s political interventions vis-à-vis HIV/AIDS. The problem lies in that the black majority sees no real alternative to the ANC despite the leadership’s views on HIV/AIDS.

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President Yoweri Museveni and the NRM classify Uganda as a no-party democracy. Parliamentary and Presidential elections are held every five years, and the first were organized in 1996 following a prolonged transition period since 1986. The Constitution of 1995 allows political parties to exist in name, but they are barred from doing any of the things that parties normally do, such as holding rallies, electing leaders or opening offices outside Kampala, the capital. The ruling party faces no such restrictions, on the grounds that it is a ‘movement’, not a party (Human Rights Watch, 1999: 51, 62). President Museveni has since the NRM’s take-over argued the need for political stability based on national unity, rather than a contestation of power between political parties. He has further claimed that Uganda is not ready for multi-party politics, because parties would inevitably represent tribes, rather than ideas or social classes, heightening the danger of ethnic strife. Keeping Uganda’s violent past in mind this might be understandable. The consequence of such a ban, however, is that apart from movements, only independent candidates with no party affiliation are allowed to run for elections. This undoubtedly undermines the legitimacy of the Ugandan elections as an institutional arrangement, as no real opposition is allowed (Human Rights Watch 1999: 53; Odongo 2000). In recent years, though, President Museveni has signalled a gradual process of change towards becoming a multi-party democracy, and the first multi-party elections were held in February 2006. When comparing the two cases, it is evident that they differ in their approaches to accountability. While the internal accountability of SANAC, and AIDS policy per se in South Africa is weak, the institutional arrangements for securing external accountability are relatively widespread (for example, elections, and with the judiciary, see below). The situation in Uganda is the opposite, with ample opportunities to hold the UAC accountable, but strict limits on external accountability. Thus, there does not seem to be a direct link between the two forms of accountability, as the hypothesis suggests. Other mechanisms of accountability appear to be at play beyond electoral politics. Transparency If policy formulation processes are not transparent, participation by stakeholders and the public in general is greatly impeded. Ever since the then South African Health Minister Dlamini-Zuma’s handling of specific projects and initiatives in the 1990s, NGOs and AIDS activists have felt marginalized by government HIV/AIDS initiatives. This was pointed out by NACOSA the same year as one particular initiative was planned: ‘Sarafina II [the particular prevention project in question] has done immense damage to the individuals and organizations active in the AIDS field. The process was not transparent and this has resulted in a rift between the Department of Health, NACOSA and the NGOs’ (NACOSA 1996, cited in van der Vliet 2004: 55). SANAC, as mentioned, has been heavily criticized specifically because there are no mechanisms for involving people and sectors that are not members

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of the Council. Also stated is that minutes and reports of SANAC’s meetings and work are kept confidential and are not being published, and a web site has not been established, so there are few possibilities to get an insight into the Council’s work. Moreover, as a consequence of the Council’s structural dysfunctions, SANAC is not being used as the coordinating and consultative body, which it was intended to be (Chirambo 2004). Policies are thus often formulated within government departments without consultations with SANAC. Bearing in mind that the Council was established as the embodiment of the partnership between government and civil society, it indicates the weak condition of transparency in policy formulation on HIV/AIDS in South Africa. The UAC’s official web page serves as a useful starting point to access information on the Commission’s work and Uganda’s response to the epidemic in general.5 Major reports and documents are available, including all National Strategic Framework for HIV/AIDS (NSF) and status reports on progress and work so far. There are annual reports for the Commission’s work for the years 1996–2000 but none besides these. The general information on the web page, however, does give a well-documented picture of what is going on in the UAC. Another feature of the political response is the ongoing consultations with NGOs and other stakeholders. The development and revision of the NSFs have been conducted through a protracted process of consultations with a broad range of interested parties. Consultative workshops have given all stakeholders the opportunity to influence the process (Parkhurst 2001: 78; UAC 2000: iv). A study conducted in the district of Masaka, for example, points to high levels of satisfaction among CSOs and reflects their opportunities to participate in and influence policy formulation (Tveit 2004: 77–82). In general it seems reasonable to claim that the processes on HIV/AIDS policy formulation in Uganda have been characterized by transparency to a greater degree than in South Africa, also reflecting the greater urgency of Museveni’s security objectives. Responsiveness Responsiveness is a critical feature of governance in the context of HIV/AIDS. The question is how well government policies adapt in the face of perceived incidence and estimated prevalence of HIV, and impact of AIDS-related illness and death. One way of gauging the level of responsiveness is by looking into the budgeting of HIV/AIDS programmes and activities. South Africa and Uganda have very different economic conditions and as such differing starting points. While South Africa is among the strongest economies in sub-Saharan Africa, Uganda is among the poorest countries in the region.6 The South African public sector response has almost totally been funded from state revenue, with some additional donor funds (Guthrie and Hickey 2004: 231). Donor funds are primarily given directly to the NGO sector (for numbers on the

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size of these funds, see Chapter 6). In spite of political controversies and reluctance from high political level to acknowledge the gravity of the situation, there has been a steady increase in HIV/AIDS budget lines in recent years. The average annual real growth rate in the budgets between 2000/01 and 2005/06 is 54 per cent, while the total HIV/AIDS budget (both nominal and real) more than doubled between 2001/02 and 2002/03.7 Although the money allocated in 2005/06 constitutes only 0.56 per cent of total government expenditure, there has been an increase from 2000/01 (0.09 per cent) to 2005/06 in total HIV/AIDS allocations as a share of total government expenditure (Guthrie and Hickey 2004: 129 and 137).8 These numbers show serious commitment on the part of government to making financial resources available for HIV/AIDS programs. In Uganda extensive financial resources have been allocated to HIV/AIDS activities in Uganda. The first NSF (1994–1998) was estimated at US$ 78.9 million for the government sector and around US$ 500 million including the non-governmental sector, whereas the costs of the latest NSF (2000/01– 2005/06) was estimated at approximately US$ 181.5 million (Tveit 2004: 70; UAC 2000: xlvi). The cost of the latest NSF constitutes 3.31 per cent of total government expenditure over the five-year period (UAC 2000: xlvi). Despite economic annual growth rates close to 7 per cent in the 1990s and in the beginning of the new millennium, Uganda is still heavily aid dependent. Aid accounts for more than 50 per cent of the national government budget. This is also reflected in funding of HIV/AIDS programmes. Ever since the HIV/AIDS crisis confronting Uganda was publicly announced in 1986, there has been a wide range of multilateral, bilateral and private external support agencies, which have contributed both financially and technically. There is no single central channel for external resources, and it is therefore difficult to get a complete overview of all the actors. It was estimated by the Ugandan government in 1996, however, that external support agencies have provided over 70 per cent of the funding for AIDS related activities (Tveit 2004: 71). The clear difference between the two countries in terms of state ability to fund responses from own sources is cited as another factor contributing to Uganda’s broad governance network, with international donor influence accommodated (Putzel 2003b; Parkhurst and Lush 2004). This is in contrast to South Africa where donors have been frustrated in efforts merely to get government to sign memoranda of understanding. Treatment and care of PLWAs can also be regarded in relation to responsiveness. As an increasing number of people fall ill from AIDS related diseases, the need for treatment increases substantially. ARV treatment can prolong the lives of HIV/AIDS patients for several years, and the medicines also play a crucial role in preventing MTCT (Mother to Child Transmission of HIV). The fierce contestation over government responsibility for ARV treatment in the public sector has been central to AIDS activist struggles in South Africa. Eventually, in 2002, the battle between AIDS activists and the government went

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to the Constitutional Court, which ruled that the government had a positive obligation to provide MTCT prevention nation-wide (i.e. beyond the 18 sites the government wished to confine treatment to, see Jones 2005). Following this court ruling, in August 2003 the government made a dramatic change in its stance by committing to making ARV treatment available throughout the public sector. The treatment plan subsequently adopted in November 2003 builds the foundation for the most extensive ARV programme in the world, with a target of more than 1 million people on treatment by 2007/08 (Chirambo 2004). Implementation of the plan has been criticized, however, due to the slow roll-out of treatment to date (Joint Civil Society Monitoring Forum 2005). The initial target of having 53 000 people on treatment by 31 March 2004 was moved back a year. Despite good policies, the implementation of the plan does not seem to be sufficiently prioritized. At the time of the final update of this chapter, in mid-2007, treatment coverage (i.e. the percentage of those in need who actually get ARVs) is 36 per cent, or, in other words, 67 per cent of PLWAs in need are still not accessing ARVs (see the Joint Civil Society Monitoring Forum 2007). An important influence upon public reactions to treatment and the pace of roll-out appears to be the often contradictory comments from the Minister of Health, as well as the silence of the President in recent years (see next section). A majority of Uganda’s HIV/AIDS programmes focus on prevention rather than treatment. There is increasing attention, though, given to ARV treatment as well. A pilot study on the effect of nevirapine upon MTCT was conducted in the country in the period 1998–2000. The study revealed positive results of a reduction of up to 50 per cent of HIV transmissions, which led to implementation of similar MTCT prevention interventions in five major hospitals (UAC 2002a: 8). Uganda furthermore participated in a UNAIDS pilot project on provision of ARV treatment in 1998. This facilitated the development of necessary infrastructure for administering the drugs. The Ministry of Health in February 2005 announced the start of a campaign to distribute free ARVs to 12 000 patients by July 2005. However, the cost of the treatment greatly hinders free access to the drugs for PLWAs. By the end of 2006 it is estimated that treatment coverage was approximately 41 per cent, or, 96 000 out of 230 000 (see Avert.org). Although apparently out-performing South Africa, it is not clear how many of these received treatment from the public sector. There is also no additional information available on the progress of the roll-out of the drugs, including concerns raised over certain well-connected social groups being prioritized over others (Lumonya 2005). Uganda also participates in the joint UNAIDS/WHO ‘3 by 5 initiative’,9 and a number of donors are funding ARV programmes (UAC 2004: 15). It thus seems clear that there is a general commitment in government to make treatment available but lingering questions about its accessibility. The South African leadership is often criticized for having responded too late to the emerging epidemic. However, as HIV prevalence rates were still

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low in 1994, other social problems were more observable and seemingly more acute for the new government than an invisible disease. The situation was different in Uganda in 1986 given that the epidemic was more mature, with higher numbers of people infected and affected, and this probably facilitated President Museveni’s implementation of HIV/AIDS as a political priority. Another problematic issue related to responsiveness as a feature of governance in the context of HIV/AIDS is the question of to whom the government should respond: the majority or the minority of the population? Some people may claim that it is unfair that a government spends large sums on treatment of AIDS patients who after all constitute only a small (and at that heavily stigmatized) portion of the total population. Such ‘controversial’ policies may thereby be easier to implement in a less democratic system. But such responses also allude to the critical role of leadership. Political leadership Political leadership is persistently highlighted in AIDS discourse as one of the most crucial elements of a successful governance of the HIV/AIDS epidemic (Barnett and Whiteside 2002; Parkhurst and Lush 2004; Putzel 2003b; Schneider and Stein 2001; UNDP 2004a). A visionary and vigorous leadership is understood to be decisive in confronting the pandemic with the timeliness and determination needed to implement efficient and effective measures. Within the governance discourse, however, there has been little focus on leadership itself as a feature of governance, although an exception is the work of Hydén and, in the context of AIDS, Patterson (2006) and Putzel (2003a; 2003b) in particular. Lack of a visionary and coherent political leadership is what is most often cited as a serious weakness of South Africa’s political response to HIV/AIDS (Barnett and Whiteside 2002; Chirambo 2004). Despite HIV/AIDS being declared as a special presidential lead project in 1994, the new government led by President Nelson Mandela never fully managed to operationalize the epidemic as a political issue. Although Mandela was outspoken on the HIV/AIDS epidemic abroad, he was less so inside South Africa. This can be understood in light of the general conservatism surrounding open public discussion around sexual matters among most South Africans. But it is also due to the newly elected government choosing to prioritize stabilization of the political transition. Following the elections in 1999, Thabo Mbeki assumed the presidency. The subsequent years would be marked by confrontations both between the government and AIDS activists, as well as within the ANC. By repeatedly questioning the science of HIV/AIDS, the President’s and the Health Minister’s stances (in stark contrast to Museveni in Uganda (see Putzel 2003b)) effectively contributed to undermining efficient implementation of efforts. Thus, instead of a united high-level political leadership pointing out a future direction for the fight against HIV/AIDS, the central leadership has been characterized by ongoing disputes on science, facts and

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numbers (van der Vliet 2004). Given the special role of the ANC as a liberation movement, President Mbeki exerts great influence on a majority of South Africa’s population. There has been a range of accounts seeking explanation of Mbeki’s so-called ‘denialist’ views, i.e. that HIV does not lead to AIDS. What is apparent, however, is that government’s responses have been and are still refracted around earlier racialized accounts of HIV/AIDS and African sexual behaviour. These views deeply affect government responses, which to date concerning treatment, are lacking coherence and in fact send contradictory and confusing messages to the public concerning the role of traditional medication in particular. Furthermore, in 2006, the former deputy President, Jacob Zuma, further undermined scientific evidence in revealing in a court case that he had sex with a HIV positive woman and showered afterwards as a method to avoid transmission of the virus (see also Chapters 9–11). Zuma was previously chair of SANAC. In Uganda, the President’s great political will to confront the epidemic is often cited as the primary reason why Uganda has managed to turn the epidemic (Putzel 2003a and b) and is in marked contrast to South Africa. By calling for action from every segment of the population the fight has become a joint national project. Furthermore, his position as the leader of the liberation movement has given his political message greater insight into and coverage of the population, including gaining the confidence of traditionalists and conservative church-based constituencies. Adding to this is his charisma, his closeness to ordinary people and great rhetorical skills. At the time when the NRM seized power, the Ugandan population had experienced years of civil strife and political mismanagement and was eagerly awaiting positive changes. President Museveni thus exercised his power at a particularly favourable time. There has been a firm direction in the response, and his openness has hence helped increase awareness and knowledge among Ugandans. The great degree of political commitment from the highest political levels has cascaded down to lower district and local levels. Given the strong guidance from the highest political level, local level politicians have a stronger incentive to act also at local and district level. There is a feeling among people working in the HIV/AIDS field, however, that the political commitment is stronger on the national than on the lower political levels (Tveit 2004: 77–9). That said, Uganda’s centralization is generally much less apparent when it comes to the AIDS issue than perhaps other issues (Patterson 2006). This is undoubtedly because it was prioritized, as mentioned, in the context of the need for internal security but also because it represented an avenue for Museveni to acquire international credibility. Given that the UAC was established within the president’s office, the Commission has, since its inception, enjoyed high political credibility. President Museveni was the first chair of the UAC, and has since been followed by an Anglican and a Catholic bishop (USAID 2002: 7). These have been

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appointed directly by the President, and have thereby been given support from highest political level. Hence, the Commission has a leadership with both high moral and political authority. In addition, the other members of the UAC are appointed by the President, which further secures the political trustworthiness of the Commission. Despite the importance of political will and commitment as explanatory factors for the diverse outcomes in confronting HIV/AIDS, one needs to be aware that political commitment provides only part of the explanation. Sole reliance on charismatic leadership may be dangerous; as leaders may change their mind or leave office, it is of utmost importance to institutionalize responses and gains both within party programmes and within organizations of the state. However, in maintaining a resolute focus on the ongoing challenge of an HIV/AIDS epidemic, high-level political leadership has an important role to play. By addressing HIV/AIDS from the highest political level, the sense of urgency is more likely to cascade down to lower levels including the general population. So, if leaders are unwilling to act to engage mainstream views, what other governance arenas can provide alternative or complementary sources of accountability? Rule of law The rule of law is an important source of protection and promotion of PLWAs’ rights. As a consequence of the general stigma related to the disease, there is a great danger of discrimination against PLWAs and their families. Proper legislation provides a useful tool in fighting prejudices and enforcing fundamental human rights. South Africa is generally acclaimed for having one of the most progressive constitutions in the world (Walker et al. 2004: 110). Its unique Bill of Rights obliges the government to be proactive in ensuring social and economic as well as civil and political rights. Law in section 9 of the Constitution establishes equality and protection against discrimination. Since 1994 several laws have been enacted that protect the rights of PLWAs. These deal with discrimination against PLWAs in relation to employment, education, and access to health facilities and practices in the insurance sector. In addition to the enactment of legislation, jurisprudence has affirmed that PLWAs are entitled to special protection under the law and may not be unfairly discriminated against.10 Civil society has used the judicial system as an active tool for pushing for government action, particularly on the question of treatment and MTCT prevention. As seen above, AIDS activists under lead of TAC took the government to court on the issue of institutionalizing an MTCT prevention programme. It was claimed that the government denied unborn children their constitutional right to life by not providing nevirapine to pregnant women. Afterwards, although the civil society campaign for a national treatment plan never resulted in litigation, the threat of this infused the campaign and negotiations with government from the outset to the finish (Heywood 2005). Thus, in the context of civil society mobilization, the legal

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framework and role of litigation in South Africa has been a critical source of accountability of policy makers and in promoting the rights of PLWAs. Although there is no explicit legislation related to HIV/AIDS in Uganda as far as we are aware, the Constitution can potentially be applied to securing PLWAs’ rights. The Ugandan Constitution of 1995 was written after a seven-year-long constitutional reform process. This process involved broad consultation through hearings and submissions to the constitutional review commission, and it is generally considered to have been among the more democratic constitution-making processes in Africa (Hydén 1998: 109). Chapter 4 of the Constitution of 1995 treats Human Rights and Freedom of the individual. Section 21, clauses (2) and (3) relate to equality and freedom from discrimination. While HIV/AIDS is not specifically mentioned, it can be understood as ‘disability’, which is one of the grounds against which discrimination is prohibited. The revised NSF furthermore refers briefly to some laws, which are relevant for the protection of PLWAs’ legal and social rights, but ‘these have not been clarified, widely disseminated, or applied by the Ministry of Justice and Constitutional Affairs’ (UAC 2004: 21). Furthermore, criminalization of sex workers and sexual minorities, similar to most other African countries, as well as government recommendations for compulsory testing as a prerequisite for marriage, stand in contravention of international human rights norms in Uganda. Openness The degree of openness in political debate is regarded as a particularly significant component when addressing HIV/AIDS because of its important role in hindering prejudices and stigmatization of PLWAs. The post-apartheid leadership in South Africa has been criticized for not addressing HIV/AIDS in a more open manner. As was pointed out above, former President Nelson Mandela seldom openly discussed the epidemic within South Africa. President Mbeki further contributed to a lack of openness by taking a stance of denial of the epidemic. As late as 2003 the President announced that he personally did not know anyone who had died of AIDS (Sunday Herald 2005). Despite high levels of awareness among the South African population, there is still a high degree of stigma related to HIV/AIDS.11 There are few people who are outspoken about their HIV status, and there are thus few role models to look to, both among ordinary people and public personalities.12 The result has been that, despite massive awareness of the causes of AIDS, there has been almost no change in sexual behaviour among South Africans. Nelson Mandela has since acknowledged that he should have done more while still President, and has now become a prominent and outspoken figure together with Archbishop Desmond Tutu in the country’s and international AIDS discourse. In January 2005 Nelson Mandela publicly announced that his only surviving son had died of AIDS, and stated in a press conference that ‘The only way of making [AIDS] appear to be a normal illness like TB or cancer

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is to come out and say that someone has died of HIV/AIDS and people will stop seeing AIDS as an extraordinary disease’ (Mail & Guardian 7–13 January 2005). This openness is in stark contrast to the current President and his Minister of Health, prompting Stephen Lewis, the out-going UN Special Envoy to Africa on AIDS, at the International AIDS conference in Toronto to describe the government’s AIDS policy as ‘more worthy of a lunatic fringe than of a concerned and compassionate state’ (in BBC 2006). Since the NRM seized power in 1986, the debate on HIV/AIDS in Uganda has been characterized by a policy of openness. Although this is not an explicitly stated policy per se, it is generally perceived to be of major importance for the country’s success in overcoming the epidemic (Tveit 2004: 78; UAC 2000: ii). The role of President Museveni in creating this environment should not be underestimated. By addressing the issue early and taking the lead in speaking out on HIV/AIDS he helped reduce the stigma and discrimination attached to the disease. Furthermore, respected public persons openly disclosed their HIV positive status. Philly Lutaaya, a well-known musician, and Canon Gideon Byamugisha, a respected member of the clergy, were among the champions. In addition, organizations such as TASO have contributed significantly to giving AIDS a human face by actively using PLWAs as counsellors and educators. Although a level of stigma still certainly exists, there is no doubt that openness on the part of the President, community leaders and AIDS activists has led to an accepting and non-discriminatory response to the epidemic. The degree of openness surrounding the pandemic in the two countries therefore differs substantially.

Conclusion What, then, do these different responses to HIV/AIDS in South Africa and Uganda tell us about governance more generally, and governance responses to the epidemic specifically? Features integral to ‘good’ governance of AIDS have been identified. Not least, one of the biggest contrasts between the two cases is specifically related to leadership and civic engagement. Above all, while Uganda, generally, has included civil society in a genuine fashion in the UAC, to ensure an open and transparent process of policy formulation, this is not the case in South Africa. Indeed the different country responses tend to underscore powerfully the critical importance of integrated multi-sectoral actor networks in effective governance. Following governance theory, such networks implicitly recognize that states are no longer able to implement policies in a vacuum, but instead require cooperation with other actors. This recognition still appears to be resisted by the South African government particularly in responding to HIV/AIDS, although more recently there is encouraging evidence of change. The lesson for more mainstream accounts of governance is also that genuine political inclusion is therefore a prerequisite for co-ordinated and effective

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responses. Other components of good governance in the context of HIV/AIDS are not necessarily in line with general understandings of governance. For example, in terms of enabling tolerance and destigmatizing the disease, the degree of openness is critical in confronting the epidemic. HIV/AIDS policy outcomes are especially contingent upon the degree of openness created by political leaders and civil society. Again, there are striking differences between Uganda and South Africa. Even in accounts of governance that are, at least at face value, more concerned with democratization, such as the UNDP, it is often not made clear enough where the impetus or mechanism for political (in-)action lays. It may be tempting to suggest, for example, as does Putzel (2003b), that it is because President Museveni was unshackled from democratic checks and balances that he has been able to have such a deep personal and dramatic impact upon HIV/AIDS. The ability to rise above the taboo and stigma, not least, has been a considerable achievement. This raises the question, however, of how much more effective these responses might have been if they were more thoroughly democratized and institutionalized. In particular, criminalization of sex workers and sexual minorities, and the more recent imprint of abstinence and generally conservative policies are not commensurate with good preventative practices (Human Rights Watch 2005). These excluded groups, for example, have much higher prevalence levels than the national average. In this, Putzel may therefore be juxtaposing quite questionable ‘means’ with contested ‘ends’. In other words, that the ‘end’ of an apparently successful campaign against AIDS was due in part to the ‘means’ based upon conservative-oriented and unopposed policies needs qualifying. If we also take into consideration the high levels of mortality of PLWAs (also contributing to lowering prevalence) and the skewed geography of responses between the North and South, the drop in prevalence is further problematized. With also recent evidence of the clampdown on political opponents, misuse of Global Funds, greater likelihood of inaccessibility of treatment for the poor majority, and, above all, that so much of Uganda’s response has been related to one (albeit key) figure suggests, as does Patterson (2006), the need for more thorough institutionalization, democratization and accountability of AIDS policy. In contrast, those checks and balances in South Africa may not have produced a coordinated and unified response to the epidemic. But they have provided an absolutely critical means for civil society to seek to acquire and transform constitutional rights and enhance accountability ( Jones and Stokke 2005). That this does not come about easily, or solely, through formal attributes of democracy is a powerful reminder to global development organizations and global civil society that mechanisms for accountability come about through politics of engagement and struggle. There is an urgent need in South Africa to re-imagine the rules governing AIDS policies and implementation: to move beyond a heavily polarized, tragic and debilitating

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situation that until recently has been all too characteristic of state–civil society relations. Governance has proven to be of great analytical value in assessing the political and exclusionary responses to the pandemic in the two cases. Increased understanding of governance as multi-dimensional and spanning a number of arenas is therefore vital for comprehending what exactly constitutes a ‘good’ response to HIV/AIDS: because what may work in one country may not work in another. That neo-patrimonialism is lower in South Africa than Uganda, for example, has not resulted in a better performance in the former (Patterson 2006). It appears to reaffirm Patterson’s contention that there is ‘no one political explanation for why some countries have effectively developed AIDS policies while others have lagged behind. Instead, country context, state–civil society relations, and a country’s experience with donors shape the politics of AIDS’ (Patterson 2006). This chapter is therefore in broad agreement with the need for a new political paradigm for AIDS in Africa. This must be one, however, that not only identifies key characteristics of states and governance, but, moreover, in so doing, seeks to create the democratic means to overturn poor practices.

Notes 1. Kjersti Koffeld co-authored the chapter while on a scholarship at the South Africa Programme, Norwegian Centre for Human Rights. 2. The AIDS Program Effort is a useful measurement of AIDS policy responsiveness, as based on USAID, UNAIDS, WHO and the POLICY Project definitions (in Patterson 2006: 24–5). 3. The sectors represented within SANAC include: government, parliament, business, PLWHAs, NGOs, faith-based organizations, trade unions, women, youth, traditional leaders, legal and human rights groups, disabled people, celebrities, sporting bodies, local government and the hospitality industry (Strode and Grant 2004: 37). 4. The PACs terms of references read: initiate, guide and develop a Provincial AIDS Plan based on the 2000–2005 Strategic Plan; feed back province-specific issues to SANAC; strengthen partnership responses among government departments, sectors of civil society and local spheres of government; mobilize resources for the provincial AIDS plan; monitor the implementation of that plan; and advise the Provincial Cabinet on matters relating to HIV/AIDS (Strode and Grant 2004: 15). 5. See www.aidsuganda.org for more information. 6. South Africa’s GDP per capita value (PPP US$) was 10 070 in 2002, while Uganda’s was only 1390 (UNDP 2004b). However, it is important to keep in mind the great internal inequalities in both countries. 7. The total HIV/AIDS budget (nominal) increased from 213 698 in 2000/01 to 2 220 202 in 2005/06 (all numbers in ZAR thousands) (Guthrie and Hickey 2004: 129).

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8. The total health expenditure as a share of the country’s budget has remained stable at approximately 11.4% throughout the period (Guthrie and Hickey 2004: 136). 9. ‘Treat 3 million by 2005’ (3 by 5) is the global initiative of the World Health Organization and UNAIDS to provide antiretroviral therapy to 3 million people with HIV/AIDS in developing countries by the end of 2005. 10. Notably, the Constitutional Court in Hoffmann v South African Airlines (SAA) ruled that the airline had violated Hoffmann’s right not to be unfairly discriminated against as a PLWHA and infringed his right to equality, dignity and fair labour practices. The court held that SAA unjustly discriminated against Hoffmann in refusing him the job of a cabin attendant when the HIV test they required of him showed positive. 11. The Treatment Action Campaign’s now famous t-shirts labelled ‘HIV positive’ were introduced after Gugu Dlamini, a young nurse, was stoned to death by after having disclosed her status as HIV positive on radio and TV on World AIDS Day in 1998. 12. Judge Edwin Cameron, when disclosing that he was HIV positive in April 1999, became the first, and only, government official in South Africa to announce publicly that he had HIV.

References AVERT (undated), ‘Who is getting AIDS drugs?’ at www.avert.org/aidsdrugs.htm, 20 June. Barnett, T. and Whiteside, A. (2002), AIDS in the Twenty-First Century. Disease and Globalization. Basingstoke and New York: Palgrave Macmillan. BBC (2006), ‘South Africa AIDS policy attacked’. http://news.bbc.co.uk/1/hi/world/ africa/5265432.stm Beetham, D. (1999), Democracy and Human Rights. Oxford: Polity Press. Booth, D. (2005), ‘The Africa Commission Report: What about the Politics?’ Overseas Development Institute. Castells, M. (2000), The Rise of the Network Society. 2nd edn. Malden: Blackwell Publishers. Chirambo, K. (2004), Director of Governance and AIDS Programme at Institute for Democracy in South Africa (IDASA). Interview, Pretoria, 29 November. Commission for Africa (2005), Our Common Interest: An Argument. Penguin Books. de Waal, A. (2003), ‘How will HIV/AIDS Transform African Governance?’ in African Affairs, 102: 1–23. Economist (2004), ‘Thabo Mbeki’s Big Win’, April. Freedom House (2005), Freedom in the World 2005 http://www.freedomhouse.org/ research/survey2005.htm 10 April. Friedman, S. and Mottiar, S. (2005), ‘A Rewarding Engagement? The Treatment Action Campaign and the Politics of HIV/AIDS’, Politics & Society, 33. Grugel, J. (2002), Democratization: A Critical Introduction. Basingstoke: Palgrave Macmillan. Guardian (2004), ‘Uganda’s AIDS success story challenged’, 23 September, London. Guthrie, T. and Hickey, A. (2004), Funding the Fight. Budgeting for HIV/AIDS in Developing Countries. Cape Town: IDASA. Hajer, M.A. and Wagenaar, H. (eds) (2003), Deliberative Policy Analysis. Understanding Governance in the Network Society. Cambridge: Cambridge University Press. HEARD (2003), Workshop on HIV/AIDS, Democracy and Development in South Africa. Durban: Health Economics and HIV/AIDS Research Division (HEARD).

120 The Politics of AIDS Heywood, M. (2004), Human rights and HIV/AIDS in the context of 3 by 5: time for new directions?, Canadian HIV/AIDS Law and Policy Review, 9(2), August. Heywood, M. (2005), ‘Shaping, making and breaking the law in the Campaign for a National Treatment Plan’, in Jones and Stokke (2005), (eds): 181–212. Hsu, Lee-Nah (2004), Building Dynamic Democratic Governance and HIV-Resilient Societies. Bangkok: UNDP UNAIDS. Human Rights Watch (1999), Hostile to Democracy: The Movement System and Political Repression in Uganda. New York: HRW. Human Rights Watch (2005), The Less They Know, the Better Abstinence-Only HIV/AIDS Programs in Uganda. New York: HRW. Hydén, G. (1992), ‘Governance and the Study of Politics’ in Governance and Politics in Africa. Edited by Hydén, G. and Bratton, M. Boulder: Lynne Rienner Publishers Inc: 1–26. Hydén, G. (1998), ‘The challenges of constitutionalizing politics in Uganda’, in Developing Uganda. Edited by Hansen, H.B. and Twaddle, M. Oxford: James Currey Ltd: 109–19. Hydén, G. (1999), ‘Governance and the Reconstitution of Political Order’, in State, Conflict, and Democracy in Africa. Edited by Richard Joseph. Boulder: Lynne Rienner Publishers Inc: 179–95. Hydén, G., Court, J., and Mease, K. (2004a), Making Sense of Governance: The Need for Involving Local Stakeholders. www.odi.org.uk/wga_governance/ Docs/Making_sense_Goverance_stakeholders.pdf. Hydén, G., Court, J., and Mease, K. (2004b), Making Sense of Governance: Empirical Evidence from 16 Developing Countries. Boulder: Lynne Rienner Publishers, Inc. IDASA (2004), What is good governance in the context of HIV/AIDS? http://www.idasa.org. za/index.asp?page=Programme%5Fdetails%2Easp%3FRID%3D23. Joint Civil Society Monitoring Forum (2007 and 2005) see www.jcsmf.org.za, 10 July 2007. Jones, P.S. (2005), ‘A Test of Governance’: Rights-based struggles and the politics of HIV/AIDS policy in South Africa’, Political Geography, 24: 419–47. Jones, P.S. and Stokke, K. (2005) (eds), Democratising Development: The Politics of SocioEconomic Rights in South Africa. Leiden: Martinus Njihoff. Joseph, R. (2003), ‘Africa: States in Crisis’, Journal of Democracy, 14(3), July: 159–69. Kjær, A.M. (2004), Governance. Cambridge: Polity Press. Landsberg, C. and Mackay, S. (2004), Southern Africa Post-Apartheid? The Search for Democratic Governance. Cape Town: IDASA. Layman, T. (2003), ‘Good Governance and Public Sector Accountability’, in AIDS and Governance in Southern Africa: Emerging Theories and Perspectives. Edited by IDASA. Pretoria: IDASA: 137–46. Lumonya, D. (2005), ‘Is the Aids fight in Uganda indeed a success story?’, Monitor (Uganda), 20 December. Mail & Guardian (2005), ‘Madiba mourns’, 7–13 January. Johannesburg. Mattes, R. (2003), Healthy Democracies? The potential impact of AIDS on democracy in Southern Africa. Occasional Paper 71. Cape Town: University of Cape Town. Nattrass, N. (2004), The Moral Economy of AIDS in South Africa. Cambridge: Cambridge University Press. NEPAD (2002), ‘Declaration on Democracy, Political, Economic and Corporate Governance’, AHG/235 (XXXVIII). http://www.nepad.org/2005/files/documents/ 2.pdf).

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Odongo, O. (2000), A Political History of Uganda. Yoweri Museveni’s Referendum 2000. London: WiCU Publishing Press Ltd. Parkhurst, J.O. (2001), ‘The Crisis of AIDS and the Politics of Response: The Case of Uganda’, International Relations 15(6): 69–87. Parkhurst, J.O. (2002), ‘The Ugandan success story? Evidence and claims of HIV-1 prevention’, Lancet Vol. 360, 6: July 78–80. Parkhurst, J.O. and Lush, L. (2004), ‘The political environment of HIV: lessons from a comparison of Uganda and South Africa’, Social Science & Medicine Vol. 59: 1913–24. Patterson, A. (2006), The Politics of AIDS in Africa. Boulder, CO and London: Lynne Rienner. Peters, B.G. (2000), ‘Governance and Comparative Politics’, in Debating Governance: Authority, Steering, and Democracy, Edited by Pierre, J., Oxford: Oxford University Press: 36–53. Plusnews (2005b), Treatment map: Uganda. http://www.plusnews.org/aids/treatment/ Uganda.asp. Putnam, R. (1994), Making Democracy Work: Civic Traditions in Modern Italy. Princeton: Princeton University Press. Putzel, J. (2003a), Institutionalising an Emergency Response: HIV/AIDS and Governance in Uganda and Senegal. Report submitted to Department for International Development, May 2003. London: London School of Economics and Political Science. Putzel, J. (2003b), ‘The Politics of Action on AIDS: A case study of Uganda’, Public Administration and Development, 24: 19–30. Rhodes, R.A.W. (1997), Understanding Governance: Policy Networks, Governance, Reflexivity and Accountability. Buckingham: Open University Press. Schneider, H. and Stein, J. (2001) ‘Implementing AIDS policy in post-apartheid South Africa’ Social Science & Medicine Vol. 52: 723–31. Strode, A. and Grant, K.B. (2004), Understanding the institutional dynamics of South Africa’s response to the HIV/AIDS pandemic. Pretoria: IDASA. Sunday Herald (2005), ‘Thabo Mbeki claims he doesn’t know anyone with AIDS, yet three of his officials died of AIDS . . . like 600 South African do every day. So why is he still in denial?’ http://www.sundayherald.com/print36998. Tveit, K. (2004), ‘Combating the HIV/AIDS pandemic: An analysis of why Uganda has been relatively successful in fighting HIV/AIDS’. Cand. Polit Degree Thesis. Oslo: Department of Political Science, University of Oslo. Uganda AIDS Commission (UAC) (2000), The National Strategic Framework for HIV/AIDS. Activities in Uganda 2000/1 to 2005/6. Kampala: Uganda AIDS Commission. Uganda AIDS Commission (UAC) (2002a), HIV/AIDS in Uganda: The epidemic and the response. Kampala: Uganda AIDS Commission. Uganda AIDS Commission (UAC) (2002b), HIV/AIDS coordination at decentralized levels in Uganda: Guideline for district HIV/AIDS coordination. October 2002. Kampala: Uganda AIDS Commission. Uganda AIDS Commission (UAC) (2004), The Revised National Strategic Framework for HIV/AIDS Activities in Uganda: 2003/04–2005/6. Kampala: Uganda AIDS Commission. Ugandan Parliament (2005) ‘Chapter 4, Human Rights and Freedom’ in Ugandan Constitution. http://www.parliament.go.ug/Constitute.htm. UNAIDS/WHO (1996), International Guidelines on HIV/AIDS and Human Rights. Geneva. UNAIDS (2004), South Africa. http://www.unaids.org/en/geographical+area/by+country/ south+africa.asp

122 The Politics of AIDS UNDP (2002), Human Development Report. Deepening Democracy in a Fragmented World. New York: UNDP. UNDP (2004a), Committed Leadership can Reverse the Course of the HIV/AIDS Epidemic. Human Development Viewpoint. New York: UNDP. UNDP (2004b), Human Development Report. Cultural Liberty in Today’s Diverse World. New York: UNDP. USAID (2002), What Happened in Uganda? Declining HIV Prevalence, Behavior Change, and the National Response. Washington, DC: USAID. Vallely, P. (2005), Development, DFID, Spring. Van Der Vliet, V. (2004), ‘South Africa Divided against AIDS: a Crisis of Leadership’, in AIDS and South Africa. The Social Expression of a Pandemic. Edited by Kauffman, K.D. and Lindauer, D.L. Basingstoke and New York: Palgrave Macmillan Ltd: 48–96. Walker, L., Reid, G. and Cornell, M. (2004), Waiting to happen: HIV/AIDS in South Africa: The bigger picture. Boulder: Lynne Rienner Publishers, Inc.

8 Male Involvement in Uganda: Challenges and Opportunities Fred Henry Bateganya, Swizen Kyomuhendo, Gabriel Jagwe-Wadda and Chris Columbus Opesen

Introduction The Government of Uganda’s (GoU) structured response to HIV/AIDS started in 1986 (see Chapters 6–7). The response to addressing HIV/AIDS in Uganda can be explained at three levels, namely, the Government of Uganda, civil society organizations, and bilateral and multilateral support from the health development partners. The AIDS Support Organization (TASO) and the AIDS information center (AIC) were the first Civil Society Organizations (CSOs) to respond to HIV/AIDS in Uganda. They were founded in 1992 and 1993 respectively. TASO started as an organization that offered psychosocial support and counselling to members who had lost partners and dear ones to HIV/AIDS. With additional funding, mostly from donors, they took on testing of HIV/AIDS status for their members. On the other hand, AIC started as an organization that offered counselling and HIV testing services to individuals who wanted to know their HIV/AIDS status. Uganda has adopted a three dimension approach to HIV/AIDS. These include: prevention and awareness, treatment and care of people living with HIV/AIDS (PLWHAs) and care and support of the infected and affected persons and families. The current chapter will limit itself to the prevention of HIV to the unborn baby by the mothers through what is known medically as the vertical transmission. To explain this, the chapter will interrogate the prevention of Mother to Child Transmission of HIV (PMTCT) programme in Uganda. It is documented that there is low male involvement in the PMTCT programme in Uganda. The researchers set out to find out the reasons responsible for this low male involvement.

Background to PMTCT in Uganda Globally the MTCT risk without any medical intervention is clinically estimated at about 30 per cent (UNAIDS, 2004 and 2005). In effect it is estimated that 16 000 babies are born with HIV/AIDS every day world-wide and that 123

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two-thirds of such infection occur in sub-Saharan Africa alone. To this effect, a number of studies have been conducted globally, first in USA, France and Switzerland in the developed world and subsequently comparative confirmatory studies were also done in Thailand, South Africa, Tanzania and Uganda, in the developing countries, with therapeutic, infrastructural, financial and technical support from the international community (MoH 2003a; Boehringer Ingelheim Corporation 2006). In 1997, the National Institute for Health (NIH) USA requested Boehringer Ingelheim Pharmaceutical Corporation for support for the HIV/NET 012 study to determine what had not yet been clearly defined by studies done elsewhere in the developed world (MoH 2003a). The corporation provided support and supplied drugs to the institute for studies in Uganda whose findings consequently confirmed that the potential of ARVs if provided within comprehensive Ante-Natal Care (ANC), Intra-Natal Care (INC) to Post-Natal Care (PNC) phases to the mother–baby pair reduces the MTCT risk by 50 per cent (MoH 2003a). Following the findings from these studies associating administration of ARVs during pregnancy, labour, and post partum period with tremendous reduction of MTCT risk (by up to between 40 to 50 per cent) PMTCT interventions were developed (MoH 2003a; Boehringer Ingelheim Corporation 2006). In 2000, to experiment with the possibility of integrating the programme to the existing health systems, with support from Health Development Partners, national and global, Uganda initiated a pilot phase of the PMTCT programme in three districts (MoH 2004). The experiences and lessons developed from this phase helped in the scaling-up of the programme nationally. Following a scaled-up plan it is reported that by December 2003 a total of 93 public health facilities in 33 districts were implementing PMTCT (MoH 2004). Considering Uganda’s sector-wide approach in fighting AIDS and integration of the programme in the existing health systems, a lot of experiences and ‘best practices’ have been adopted by other countries in the continent and other continents. The current PMTCT package includes: voluntary counselling and testing (VCT), anti-retroviral therapy (ART) for positive mother–baby pair, quality ante-natal care (ANC), intra-natal care (INC) and post-natal care (PNC), counselling and support for infant feeding, and promotion of community and family support (MoH 2003a, 2003b and 2004). It is clear in the PMTCT policy that the programme should promote male partner involvement in reproductive health and infant feeding issues.

Challenges of PMTCT programme in Uganda MoH reports (2003 and 2004) indicate that there are two major challenges encountered by PMTCT programme in Uganda, namely the structural inadequacies and the low male parents’ involvement and support to the programme. The reports show that not all women attend ANC clinics: 90 per cent

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Table 8.1 Detailed statistical data on the uptake of VTC in PMTCT programme sites in Uganda Year

2000 2001 2002 2003

% counselled

% that refused counselling

% tested after counselling

% not tested after counselling

69 74 72 77

31 26 28 23

72 68 69 55

28 32 31 45

Source: Adapted from MoH 2003c: Programme annual report.

of mothers attend ANC services only once during pregnancy mainly, in their third trimester, and only 38 per cent of mothers deliver in the hospitals/health facilities. 30 per cent of women counselled in ANC clinics refuse to take HIV-tests and 40 per cent of those tested do not enrol on the programme (MoH 2003c) (see Table 8.1). The MoH (2003a and 2003c) report noted that ‘the low uptake of PMTCT programme is not surprisingly below average. The problemme lies in the low involvement and support for the programme by male parents yet they are the primary decision makers in the house.’ Another MoH report (MoH 2003c: 49–50), observed that ‘despite scaling up the programme, the obstacle to increased uptake is the low male parent’s involvement in the programme.’ Expectant mothers are refusing to take up the programme for fear of violence and loss of partners’.

Problem statement Ministry of Health Sentinel reports (MoH 2003a, 2003b, 2003c, 2003d and 2004) show low male parent involvement and support for the PMTCT programme. Specifically, MoH (2003c) observed that at least 30 per cent of the Ante-natal Care (ANC) clients decline in VCT, while 40 per cent of pregnant women who test HIV positive decline to take up the subsequent packages of the programme including the freely supplied ART. Another MoH report (2004) revealed that each subsequent stage of the programme is characterized by loss of a substantial percentage of enrolled mothers for the PMTCT programme. A number of factors were believed to be responsible for this decline. Among other factors the low male parents’ involvement and support for the PMTCT programme was identified. While this low male involvement was broadly known, the reasons for this tendency (state of affairs) were largely unknown. The purpose of the study therefore was to interrogate factors responsible for low male parent participation in the PMTCT programme.

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Study objectives The general objective of the study was to establish and examine factors responsible for low male parent participation in PMTCT programmes. Specifically the study was carried out to: 1. Establish socio-cultural constraints to male parents’ involvement in the PMTCT programme. 2. Study the programmatic structural constraints to male parents’ involvement in PMTCT programme. 3. Identify measures that will foster active male parents’ involvement and support for the PMTCT programme. 4. Assess the impact of community support to male parents’ involvement in PMTCT services.

Methodology The study employed a qualitative methodology in interrogating the various reasons responsible for low male involvement in the programme. Specifically, the study was interested in establishing the ‘whys’. The study respondents were parents, health-care providers and community members. The study instruments used included: in-depth interviews, key informants interviews’ and focus group discussions (FGDs). The data analysis was done manually though the Nudist 6 (N6) computer package was used for summarizing and categorizing the data.

Findings The nature of the PMTCT service delivery It was found that the current PMTCT programme doesn’t cater for male partners in as far as services are concerned. According to the policy, pregnant women with HIV infection are treated with either (a) Niverapin at the onset of labour pains and Niverapin syrup given to the baby within 72 hours after birth, (b) Zidovudine from 36 weeks of gestation until one week after delivery and syrup to the baby for the first week after birth, or (c) Zidovudine and Lamivudine from 36 weeks of gestation until one week after delivery for the mother and to the baby for the first week after birth (MoH 2003a). As indicated above, it is only the females who are the recipients while the males are dormant actors in the programme. This passive tendency among males in the PMTCT was severally echoed by several respondents who remarked among other things that: why should men come too? When a woman is tested she is catered for and given her ARVs, so they feel even when they come, they gain nothing. (FGD, male parent at Victoria Nile Primary School)

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Apart from counselling, men don’t receive Niverapin. The ARVs are only given to the mother and baby. I think when men see their wives taking these ARVs they imagine they are being neglected thus being left to die, so in subsequent stages, they don’t turn up. (Key informant, female health worker at Jinja hospital) It was evident during the study that there are still some serious concerns over disclosure of HIV status among some respondents. While Voluntary Counselling and Testing (VCT) is included among the services offered under the PMTCT programme, some males openly said that they were uncomfortable with this testing, more so if it is only done to the women (their partners). A health worker for example informed us during an interview that we have seen and heard [of] several male partners who threaten to abandon their spouses if they go and test for HIV. In this community, the male is the head of the family so the women have to oblige otherwise we can’t buy for them food if they are left by their husbands. We have had cases here where some women have told us that their husbands have threatened to abandon them if they take the HIV test. (Key informant, female health worker at Jinja hospital) The nature of provision of services and the criteria used has contributed to low male involvement in the PMTCT programme. The males use this marginalization to justify their non-involvement. HIV/AIDS disease and stigma Although Uganda has had an open HIV/AIDS awareness policy over the last 20 years, it was clear from the discussions held with respondents that HIV/AIDS stigma is still high among the population. Reasons for this in the study area were attributed, among other things, to the nature of transmission of the HIV – at its inception sexual transmission was mainly emphasized. People who contracted HIV in the early stages of the epidemic were variously criticized and labelled immoral. This labelling was still evident during the study. The fear of being labelled an immoral person also contributes to the low male involvement in the PMTCT. Some men fear being tested for HIV because if found positive this will trigger such labelling in the community. An in-depth interview respondent remarked that You can imagine even in religious places of worship, such people [PLWHAs] are stigmatized as immoral. This is what is making people keep away from the programme even when they know they are positive. (A 28-year-old parent at Gabula road, Jinja) It is clear, therefore, that such stigma has negatively impacted the PMTCT and is being blamed for low male parents’ involvement in the programme.

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Since PMTCT is associated with stigma, many male parents have shunned the programme and also discourage their spouses from being part of the programme including those who are positive, and are aware, in order to avoid labelling. To this effect, one male participant noted that There is lack of community support for this programme. Any one who enrols for this programme at any level even just VCT is counted sick. In effect many men including those who know their sero statuses as either positive or negative are evading the programme to avoid such labelling. (Male parent in a FGD at Kiira Primary School, Jinja) It was established that many people were absconding from the programme and resorting to private user friendly clinics and traditional birth attendants because of the fear of stigma. This finding collaborates with what was found in 2003 by MoH that many couples may get involved in the preliminary stages of the PMTCT programme but turn down the subsequent services in the INC and PNC Phases (MoH 2003c). Community support Establishing community support for the PMTCT programme was one of the objectives of the study. Findings indicate that there was low community support for the programme. The framework and the structuring of the PMTCT programme were found to have excluded community leaders and politicians. This was exacerbated by the lack of direct monetary benefits. As a result, local leaders just looked on since there was nothing offered, ceremonial or otherwise, to encourage a sense of ownership of the programme as is the case with other programmes.1 This oversight in the implementation stage of the PMTCT programme could be said to have contributed to the low male parents’ involvement in the programme. A parent at Nizam village observed that this programme has excluded opinion and community leaders, most of whom are men. And since the structure of the programme is excluding them they are not benefiting from the programme as they are getting nothing, when asked to support it they ask themselves how they will benefit. They stand aside ‘praying’ the programme fails so that their worth is appreciated. (In-depth interview, a 34-year-old parent, Nizam LC1 village, Jinja) Another revealed that I have to be honest. We hold regular meetings but in all, we have never discussed the issue of encouraging men to participate in the programme [i.e. PMTCT]. I even doubt if we have any of the community leaders participating in this programme. (In-depth interview, opinion leader, male parent Nizam village, Jinja)

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Politicians who are supposed to play a major role in mobilization and advocacy were also reported to be silent about the programme. This muted support for the PMTCT programme to some extent contributes to the low community support in general and low male involvement in particular. Views highlighting politicians’ conduct in regard to this programme are better captured by the remarks below: instead of submitting information about this programme to the community, they come politicking ‘kisanja’. Our leaders are even worse, they are too officious after elections, they are only part of us during ‘kakuyege’ [campaigns] but after going through they forget all our problems they used to claim to know. (In-depth interview, a 23-year-old male parent, Kisenyi, LC1 village, Jinja) Gender division of labor and the role of men in health seeking Findings reveal that male participation in health seeking is informed by the broader allocation of tasks (labour) in the study community. Gender allocation of reproductive roles varies from tradition to tradition. Family gender allocation of reproductive roles plays a very vital role in influencing the health seeking behaviour of family members. The health-seeking behaviour of males in the area of child reproduction is very poor. Regardless of the socio-economic characteristics, time and again male parents tend to engage much more in productive rather than reproductive roles. The reproductive roles are left for women, and men’s involvement is very limited. Given the existing structure of subordination and domination (patriarchy), in most traditional African societies the health-seeking behaviour of males and females is patterned and systemic. Mothers, because of their socialization and internalization of culture, are expected to embrace reproductive roles as their domain (Jagwe-Wadda 2005). Where men engage in reproductive roles they are sometimes discouraged through peer pressure by fellow men. Thus, the assistance given by men to their wives is limited and rarely involves major reproductive roles like escorting a wife to ANC, INC and PNC clinics unless the situation is seriously demanding, as in the event of a caesarean medical recommended, which would make male partners’ presence more important. The nature of the work done by males also influences the extent of maleparents’ involvement in reproductive roles and health-seeking behaviour. Men doing labour-intensive activities like fishing, mining, and casual labour have no time for reproductive health programmes like PMTCT. These gender roles are obvious and are understood by each gender. Traditionally, men are breadwinners and must look for money. One participant emphasized that Men tend to ignore things like pregnancy issues such as antenatal care and delivery, as [these are] meant for women. For fishermen, a man simply leaves money behind and goes to Buvuma Islands where he can spend

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over one week fishing without coming back. He has no time for these programmes, moneymaking takes priority among men. (FGD, a male parent, Victoria Nile P/S, Jinja) Similarly, a male parent asserted that When a woman insists that the man should escort her, he simply pays a deaf ear or even gets harsh. In most cases we only escort wives during labour pains or simply give them transport. (FGD, a male parent in Naranbai P/S, Jinja) With this internalized division of roles, each sex is conscious and protective of its roles. Roles are obvious and well known to each gender. For instance the wife’s, aunts’, sisters’, grandmothers’ and mothers-in-law’s roles lie in the reproductive field. They have to go with the wife to ANC, intra-natal care (INC), PNC and take the children for health days. Some key informants indicated that I want to tell you what exactly is on the ground as really an informed person in the field. Take a look at clients out there. You will not see a single male parent. When we ask these mothers for their husbands, they say, ‘abasajja bagenze kukola!’ [the husbands have gone to work]. When we insist that they ask their husbands to come, some women say, ‘what shall we eat if we all come here’ (Key informant interview, a health worker in PMTCT site Jinja Hospital, Jinja). From our tradition, the work for men was distinguished. If a child is sick or a wife is pregnant, my role is to give her money to go to the hospital as I go to look for more money. Imagine a situation where a woman takes over a month in the maternity ward, do I have to sacrifice my roles to be with her in the ward? How about those I am keeping in my home – the sisters, the aunts, grandmothers, what will they do and of course they know their work. (In-depth interview, a 39-year-old parent in Kyaggwe road LCI village, Jinja) Contrary to the traditional views, the issue of the socio-economic status is a very important one. Besides the values of tradition, wealthy families may have male parents less involved in the reproductive PMTCT programme compared to poor ones. Whereas in a wealthy family the wife may drive herself to ANC/PNC, a poor man may escort his wife for especially when she is weak or unable to walk. Involvement in this programme depends on the family status. Whereas in a wealthy family, the woman can simply drive herself to the health

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unit, in a humble background like mine, a man has to escort his wife. You have to ask her, when again are you meant to report? (In-depth interview, a 40-year-old man, Nalufenya LCI village, Jinja) However, not all people value the traditional gender role allocation all that much. Some people attach less significance to these gender stereotypes, its impact on male involvement in reproductive roles may be very marginal. For some people these divisions are not as binding as they used to be in traditional families. Escorting the wife to PMTCT or not is more a question of rationality and the nature of work one does than gender stereotypes. Activities such as fishing, military service and mining, may keep the man away from home. In such a situation the husband cannot leave work to escort a wife for PMTCT services. To me, that is not the problem, rather it is the nature of work men do. Personally, I am a soldier and always in military service. I simply go home once in a while and return to the barracks, leaving the wife pregnant. Next time you may go home and find the child even walking. This means that despite your wish to attend to your family, you have no opportunity of escorting your madam to the health center. (In-depth interview, a 33-yearold male parent, Kisenyi LCI village, Jinja) The growing magnitude of urbanization and a tendency towards nuclearsized families has impeded the continuity of traditional gender role stereotypes. Without any choice, some male parents today in the urban areas may assume some of the roles that were traditionally meant for women. For instance, cooking, washing, take care of children, especially where the wife is gainfully employed and busy at work. Therefore, in such a situation, lack of male involvement in the programme would be a matter of choice or attributed to lack of awareness rather than traditional values. This has been exacerbated by the declining availability of relatives who can provide the needed reproductive assistance. This was clearly articulated by one key informant: Unlike those days, life is changing and men are engaging in things they used to avoid traditionally as roles for women. Men can cook, wash, take children to the clinics and if they can do that, then how do the traditions come in to bar them from involving in this programme? Besides, where are the idle aunts, grandmothers or sisters to play their reproductive roles in town today? You have to escort your wife for delivery. You are simply living with only your child and your wife. Perhaps your wife even hates all your relatives, and even neighbours today are individualistic. (In-depth interview, 27-year-old man, Gabula road LCI village, Jinja)

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Health-facility based factors affecting male involvement in the PMTCT programme It was found that health-facility based factors were also responsible for low male involvement in the PMTCT programme. While the health units in the study area were many, this section will be limited to the Jinja Hospital, a national referral hospital found in Eastern Uganda. The PMTCT facilities at the hospital (like other hospitals) do not take care of the needs of female clients’ spouses whenever they accompany their partners for ANC, INC and PNC. The traditional design of these facilities has not been modified and seemed to be insensitive to the few males who chose to attend the clinics. For example, obstetric units have no privacy and stop men from involving in the INC phase of the programme. The entrance to the obstetric wards has a clear sign reading ‘Abasajja tebakirizibwa!’ meaning ‘men are not allowed’. This is testimony to the gender insensitivity of the programme. A key informant at the hospital noted that the way maternity wards are designed is generally gender insensitive; they are just open and to make it worse most women are used to female health workers. They fear any man peeping in not even a male doctor. Men themselves also fear seeing another person delivering in the same ward. Even we health workers feel bad seeing one couple watching another wife pushing there and so we keep men out. (Health worker, Jinja hospital) The attitude of some health workers was identified as a reason for low male involvement. It was reported that some health workers in the PMTCT programme show inappropriate attitudes towards male parents. Some were reported to be rude and harsh to male partners who came with their wives to the health facility. Male faulting especially at the time of birth by pregnant women was identified as another reason for low male involvement in the PMTCT programme. Male faulting involves apportioning blame to men especially by health workers and women at the point of delivery. To minimize abuse, swearing and other unpleasant language from wives in maternity, health workers are forced to stop men from involving in the programme at the intra-natal care level – particularly obstetric wards. Parents noted that the nature of childbirth, coupled with the character of some of the women, mean most males stay away. This is clearly explained in the views below: it is the character of women that has affected male involvement in this programme. Men simply fear their wives when they are in labour pains. She can abuse him or even bite off your finger if you joke around and some swear never wanting to be with you again. This is what men want to avoid. (A 37-year-old parent, at Gabula road LCI village)

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Information Education and Communication (IEC) strategy Eighty per cent of the respondents interviewed did not know anything about the programme. The IEC materials, such as posters, flyers, films, etc., were said to be placed in the PMTCT sites, yet not all men visit these sites. Use of the print media was reported to be ineffective because many people cannot afford to buy newspapers. Finding an appropriate language to use in the IEC was another challenge as Jinja has a mosaic of ethnic groups. The challenges of ineffective IEC ware captured by the views of a parent at Nizam road during an interview: there is lack of awareness about the programme. But this is all because the system of communication is too poor. If they think they are going to communicate to women in ANC alone thinking they are informing the whole community, am sorry that is inadequate, men will stay behind information and will not act. If they think they will use newspapers, they are missing the point. Our reading culture is too poor and besides how many more men are literate and do not buy newspapers than those who do in Uganda? And worse of all, if they think they are going to communicate using the less informative and vague business like advertisements on Kiira FM and that is all, they are wasting their resources. Men are ever working; those with radios and TVs have no time to listen to them. Those with time are poor to buy radios and feed them with batteries. And precisely, using such modes to communication such a vital programme is equal to keeping quite about it. (In-depth interview, a male parent in Nizzam road LCI village, Jinja) No civil society organizations (CSOs) in the PMTCT in Jinja There is evidence that civil society organizations (CSOs) have been instrumental in the HIV/AIDS response in Uganda (Asingwiire et al. 2006). However, in Jinja Municipality, the study site, though there are a number of CSOs, like the AIDS Information Center (AIC), and The AIDS Support Organization (TASO) among others, these CSOs did not play in visible role in the PMTCT programme. Whereas TASO provides VCT and psychosocial support among other services, and AIC provides VCT, these programmes run parallel to, and are independent from, the PMTCT programme. Consequently, the programme uptake and involvement of male parents in the programme is reportedly still low in the area. This situation seems to obtain even in other districts where the CSOs do not participate directly in the PMTCT programme. This is mainly because of low programme awareness, poor social mobilization and lack of moral support from the civil society sector. Involvement of CSOs in the PMTCT programme would promote programme uptake and male parents’ involvement in it as in those other districts2 where CSOs have input in the programme especially through social mobilization, service delivery and research.

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Effective strategies and measures to promote male parents’ involvement in the PMTCT programme From the above findings we suggest a couple of strategies and measures that could be used to increase male involvement in the PMTCT in particular and uptake of PMTCT services in general. These include: the adoption of better IEC strategies; community support mobilization; involvement of CSOs in mobilization and advocacy; and programme re-design to become gender sensitive. Adoption of better IEC strategies, such as inclusion of the programme in the education curriculum, use of plays and films and avoidance of media forms that may arouse stigma, fraud and fear feelings among the populace, were recommended as very effective IEC strategies, raising programme awareness and supportive attitudes. The IEC strategies adopted should be acceptable and appropriate to all or most of the ethnic groups and socio-economic statuses of the population found in the study area. For instance, one male parent was of the view that There is need to improve the communication methods. Radios are not effective. They are only good for people who are working men [who] have time to listen. Of course some people can even prefer to listen to music instead of live talk shows on health issues. Moreover it is only those with radios and those who can afford to buy batteries who will benefit from that media. The methods adopted should be able to benefit even the deaf since all categories of the population have people who are ignorant about the programme or who know little about it. (In-depth interview, a 32-year-old teacher and parent Gabula road LC I village, Jinja) So policy makers should therefore involve IEC strategies which are more effective. The programme should be integrated in the education curriculum involving the use of plays, dramas, films and music festivals that have wider audience. One community leader observed that Let them involve the school community. First, integrating it in the curriculum so that the teachers will understand it and also the children especially males will internalize as their role and as they grow. Public measures like use of music festivals, plays could be better alternatives. For instance, in creating AIDS awareness, Phillip Lutaaya’s film did a lot and also dramas like ‘Ndiwulira Bakayimbira’ and if entry is free, this will convey a better message to many male parents at a go and therefore change their attitude. (FGD, male parent at Victoria Nile P/S, Jinja) The PMTCT programme implementers should as a matter of urgency bring on board opinion and local leaders. This will serve more than one purpose.

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Firstly, this will give the programme a sense of the legitimacy as the population will take pride in associating with a program which their leaders have ‘brought’ in the area. Secondly, involvement of the general population through their elected and opinion leaders will create a sense of community ownership of the programme. Every available opportunity should be used to mobilize the population thus politicians, religious leaders and traditional leaders should be integrated into the mobilization machinery of the programme. The issues discussed above were also echoed by a 27-year-old parent at Nalufenya village: The program generally needs to mobilize community and moral support. The office of the District Directorate of Health Services, medical superintendent and other key stake holders have to pass on the information to the politicians, the community development organizations, the NGOs and CBOs around to back up the programme. If leaders like the Mayor openly went with his wife for his programme and the public is informed, I think the programme would catch the attention and many will support it. (FGD, a male parent (and a teacher), Jinja S S, Jinja) Civil society organizations should be used for mobilization and advocacy of the PMTCT programme. Where CSOs lack the resources to run the activities, they should be helped to handle specific aspects of the program. This has worked in Bushenyi and Lira where USAID and the HIV/AIDS Integrated District Model (AIM) have funded PMTCT and other related programmes (MoH 2004). It is reported that male involvement and uptake of services is quite high in comparison. There is need for programme re-design in order for it to become gender sensitive, focusing on policy reviews and modification of the facilities. There is a need to provide services to the males who come with their partners. In addition, the attitude of health workers in PMTCT sites must also be positively sensitive to male parents without male faulting and aggressive language being directed to male parents. In addition, the conceptualization of the programme should also be gender neutral to read Prevention of parent to child transmission of HIV/AIDS/STDs (PPTCT+).

Implications and conclusions This chapter has identified a number of issues that may inform our understanding pertaining to low male involvement in the PMTCT programme:

• The current nature of PMTCT programme and criteria of service provision is female centred and marginalizes male involvement with regard to service provision.

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• HIV/AIDS stigma is still high and negatively impacts on low male involvement forcing the male partners to shun the programme activities.

• Lack of support from community leadership is partly to blame for • •

•

•

poor mobilization and advocacy and general low involvement by males. The traditional patriarchal tendencies and stereotyping of gender roles, though on the decline, have been a major contributing factor for poor male involvement. The traditional design of facilities does not motivate full male participation in ANC, INC and PNC clinics. Some areas in the facility (obstetric wards) are perceived as female domains only, and men are not allowed to enter (thus rendered redundant). Male faulting is another obstacle to male involvement especially when health-care providers apportion blame to males as the main cause of the problems, and accuse them for being argumentative during ANC, delivery and PNC. The role and involvement of the CSOs in the PMTCT programme should be promoted and embarked upon both nationally and internationally. This should also involve creating awareness among CSOs of the programme and the role they should play in it.

We believe that there is still room for improvement in male involvement and these obstacles can be circumvented if equity issues in access to PMTCT services are addressed. Strengthening PMTCT programmes in Uganda will require borrowing best practices from other countries on the African continent and beyond. There is a lot to be learned from lessons in other counties where community mobilization and IEC strategies have been more effective. For example, in Zambia it has been found that involving male partners can make a real difference in improving women’s uptake of PMTCT services. If men are engaged in outreach services successfully, they are far more likely to support women at critical turning points e.g. deciding whether to take an HIV test, returning for test results, taking ART drugs, and practising safe infant feeding methods. Similarly, providing men directly with information confirms their important role in such decisions as uptake of VCT services and removes sole responsibility from women. It is argued that this would be more successful if men are given information directly outside the antenatal or maternal child health clinic setting, which many men perceive as the exclusive realm of women. These attempts have worked well in Zambia and Kenya (Baek and Kalibala 2003). There is need for a holistic care for the family as an entity and not simply focusing on the mother and the child. Men should be encouraged and made to see the benefits of PMTCT themselves instead of relegating them to the periphery when they turn up for PMTCT services.

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Notes 1. Other health programmes have catered for local leaders in terms of mobilization and other roles. The home-based management of malaria/fever (HBMF) was variously mentioned by leaders interviewed. 2. Districts like Kampala, Bushenyi and Lira are reported to be doing well in PMTCT, which is due to involvement of CSOs, among other factors.

References Asingwiire, Narathius et al. (2006), Review of the Current Status of district HIV/AIDS Responses Commissioned by the AIDS/HIV Integrated Model District programme (AIM) in 16 AIM supported districts to provide a basis for understanding requirements for scale up. Baek, Carolyn and Sam Kalibala (2003), ‘How Implementing PMTCT Services Expands HIV Prevention and Care: Evaluation finds multiple benefits for facilities, clients’; Horizon Report on Operations Research on HIV/AIDS, Population Council, INC. Boehringer Ingelheim Corporation (2006), Press release statement, 13 May 2006. Jagwe-Wadda, G. (2005), ‘Gender Rewards and Fertility Behaviour in Sub-Saharan Africa: A traditional perspective’, in Mukama, R. and Murindwa-Rutanga (2005) (eds), Confronting 21st Century Challenges Vol.3, Faculty of Social Sciences, Makerere University Printery: 165–81. MoH, the Republic of Uganda (2003a), Policy for Reduction of Mother to Child Transmission of HIV/AIDS/STDS in Uganda. 2003. MoH, the Republic of Uganda (2003b), The Communication Strategy for Reduction of Mother To Child Transmission of HIV/AIDS 2003–2005. MoH, the Republic of Uganda (2003c), PMTCT Programme Annual Report 2003. MoH, the Republic of Uganda (2003d), A Review of the PMTCT Programme in Uganda. The Human Rights Based Approach. UNICEF, Aug–Oct 2003. MoH, the Republic of Uganda (2004), PMTCT Programme Annual Report 2004. UNAIDS (2004), Report on the global AIDS epidemic – July 2004. Geneva. UNAIDS (2005), AIDS in Africa, Three Scenarios to 2025, Geneva.

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Part 3 Responses from Civil Society: Africa

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9 Global Struggles, Local Contexts: Prospects for a Southern African AIDS Feminism Suzanne Leclerc-Madlala

Introduction At the launch of the 2004 United Nations Task Force Report on Women and Girls in Southern Africa, Secretary General Kofi Annan made the following remark: ‘Across all levels of society, we need to see a deep social revolution that transforms relationships between women and men, so that women will be able to take greater control of their lives, financially as well as physically’ (UNAIDS 2004). In calling for a social revolution, Mr Annan was reflecting the thoughts of many AIDS activists and researchers in the region who were long familiar with the tragic consequences of gender inequality in the context of HIV/AIDS. The need to accelerate the global struggle against patriarchy and its system of endorsing male privilege while promoting female vulnerability is perhaps nowhere more clearly evinced than in Southern Africa today. Here, young women are three to six times more likely to be HIV infected than young men of the same age. Among older women marriage appears to be a primary risk factor for infection. In one regional study it was found that 60–80 per cent of HIV positive women reported to have had sexual relations only with their husbands (UNAIDS 2004). At every stage in the maturation of this epidemic, from the prevalence of HIV infection to the management of the AIDS sick, dying and orphaned, women in Southern Africa are disproportionably infected and affected by the disease. Feminist health activists have long argued that women’s social and political inequality directly compromises their health and life chances (Wilton 1997), and the extraordinary impact of HIV/AIDS on women in Southern Africa is an attestation to the validity of this argument. From the earliest days of social science research on HIV/AIDS in Africa, studies revealed the myriad ways in which existing gender power imbalances impacted on women’s lives and hindered their abilities to protect themselves against infection and slow the rapidly rising rates of HIV. Works by Bledsoe (1990), Ingstadt (1990), Schoeph (1992), Ulin (1992), McGrath et al. (1993) Obbo (1993), Udvardy (1995) and Haram (1996) for example, all demonstrated the need for placing 141

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gender inequality and local social constructions of gender at the centre of strategies aimed at preventing the spread of HIV in Africa. From the perspective of those scholars, the intersection of gender and AIDS presented a natural platform from which to launch programmes that could potentially address two struggles simultaneously; the struggle against gender inequality and the struggle against HIV/AIDS. Many believed that the increasing visibility of the social devastation caused by the disease and its inordinate impact on women could provide the sort of trigger needed to spark a broad-based women’s movement against the region’s entrenched patriarchy. From the growing body of feminist-oriented literature on gender and AIDS in Africa throughout the 1990s there emerged a sense that something positive might yet derive from the exigency of HIV/AIDS. In retrospect, such hopes were naïve. For one thing, with very few exceptions almost all the early researchers who conducted studies of gender and AIDS in Africa were non-African middle-class academic women from the northern developed world. While their interests in the lives of poor African women were no doubt genuine, their analyses, interpretations and recommendations were necessarily framed by the ideas and ideals of a western women’s liberation movement. To assume that those same ideas and ideals had been, or could be readily exported and applied within the context of AIDS in Africa was to assume too much. Among the many things that a decade of conducting ethnographic research on HIV/AIDS among Zulu-speaking people in the province of KwaZulu-Natal has taught me is that the globalization of epistemologies (including gender analysis) and the diffusion of ideas (such as feminism) across different cultural settings is far from being a linear process with predictable results. Gender ideologies structure, and in turn are structured by, the particularities of social, cultural, economic and political contexts. In many ways our understanding of global forces in relation to gender and how they are inflected at the local level is still at a nascent stage. Another problem had to do with the way particular academic perspectives influenced public debates on HIV/AIDS early in the region. While biomedical approaches predominated in shaping the politics of HIV/AIDS and determining responses to the disease, some social science perspectives also contributed to the shaping process. The perspectives of economists in particular, and those interested in drawing attention to geopolitics and macro-economic forces that made African societies especially vulnerable to HIV/AIDS, had a significant impact on local public engagement with the disease. In demonstrating the potential for social chaos and economic collapse in the wake of the epidemic, the compelling work of scholars such as Barnett and Whiteside (1999 and 2002) helped to draw international attention and funding to the AIDS crisis. However, such studies also had the unintended effect of making other social science approaches to the study of HIV/AIDS, especially micro-level studies that incorporated gender analysis, seem unimportant, secondary, and even trivial. Highlighting

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gender power imbalances simply did not carry the same weight or allure as did highlighting global power imbalances. It is only more recently that international bodies such as UNAIDS (2004) and regional stakeholders like the Southern African Development Community (2006) are acknowledging the shortcomings of policies and interventions that have failed to account for and address gender inequalities in the context of HIV/AIDS. It is precisely due to the epidemic’s unabated growth in Southern Africa that we are now seeing a wider appreciation for perspectives aimed at understanding gendered relations of power and their cultural and social implications that have alarming implications for our ability to slow the growth of HIV/AIDS.

Feminism for AIDS In lieu of the kind of social movement against HIV/AIDS and gender inequality as envisioned by feminist scholars, UNAIDS and others as essential to any long-term solution to HIV/AIDS in Southern Africa, there has emerged a social movement that has sought to represent the interests of all those infected and affected by the disease. The Treatment Action Campaign (TAC) was launched in 1998 to promote equitable access to HIV treatment and is by far the most influential AIDS activist organization in Southern Africa. With its primary goal of ensuring that everyone living with HIV/AIDS receives affordable treatment regardless of their ability to pay, the movement has used the discourse of human rights to become one of the most successful transnational social movements in the world. Yet, the extent to which this organization has conceived and articulated a gendered approach to HIV/AIDS or has addressed the concerns of women infected and affected by the disease, including women working in the organization itself, remains limited. In the KwaZulu-Natal office of the TAC for example, women have voiced their concerns regarding issues such as on-going sexual harassment by male activists (see also Chapter 11), resistance by male colleagues to listen to or to include a gender discourse in the organization, lack of capacity building opportunities for women activists, and the glorification of particular male leaders. Such experiences have caused some women members of the TAC to feel sidelined and have prompted calls for the organization to take on gender issues with the same rigour that it has applied to race and class (Connor 2005). While most women activists within the TAC such as Mthathi and Richter (2006) hope to transform the organization into a more gender sensitive civil society body with a more clearly gendered approach to HIV/AIDS, others see the need for an entirely new social movement around the disease, created by and led by women with a central focus on gender inequality and gender-based violence. What follows is an exploration of the interplay between global discourses, local contexts, civil society and countervailing forces in the development of

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a grassroots Southern African feminist movement against HIV/AIDS. Such a movement would link the fight against HIV/AIDS to the subversion of existing gender regimes reinforcing and reproducing the patriarchal systems that make women throughout the region so vulnerable to the disease. Borrowing from Richter (2005) the term ‘AIDS feminism’ is used here to describe such a movement. This chapter considers how and why this type of approach to HIV/AIDS is not only appropriate, but crucial.

A view from below In 1995, a year into South Africa’s new democratic dispensation, I was asked to conduct an external evaluation of one of KwaZulu-Natal’s first foreignfunded HIV/AIDS awareness programmes. Implemented through the Valley Trust, one of the province’s largest and oldest non-government development organizations, the programme relied heavily on the promotion of male condoms for HIV prevention. Charts and graphs indicating increases in condom distribution over time were neatly displayed in the office of the AIDS programme director. My brief was to assess the extent to which the organization’s AIDS awareness programme and wide distribution of condoms was resulting in behaviour change for safer sex amongst the youth in the semi-rural villages served by the Valley Trust. The programme director was obviously proud of his programme, and seemed to fully expect that my research would yield a glowing report. However, my experiences and knowledge of the local dynamics related to gender, sexuality and HIV/AIDS in the province caused me to be less than optimistic. Having come from North America to South Africa in 1984 at the height of apartheid to marry my Zulu-speaking fiancé, my life up until then had been largely spent with my husband’s family in a run-down, peri-urban black community known as St Wendolin’s. This community had no electricity or piped water, but plenty of opportunities for experiencing the violent final years of the struggle against the apartheid system. Although the radio and newspapers carried intermittent warnings about a growing HIV/AIDS epidemic, the more immediate threats to wellbeing posed by the changing political order made warnings of the distant threat of AIDS sound contemptible. AIDS messages were ignored along with their premier prevention technology, the condom. My experiences in St Wendolin’s made me less than hopeful about the success of the Valley Trust’s AIDS programme. By the end of the evaluation study, my research had revealed that the youth (for purposes of the study defined as persons between the ages of 15 and 25), held very inconsistent views on HIV/AIDS including many myths and misconceptions that hindered the acceptance of HIV prevention messages. Among other things there were widespread beliefs that condoms contained lubricants that carried the HI virus and that fruits and poultry sold in the

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area had been injected with HIV-infected blood. Some young men believed that sex with a virgin could cure them of AIDS, that having multiple concurrent sexual partners was a necessary part of being a man, and that hitting and beating a girlfriend was a way to show love. For young women there was an acceptance that gender-based violence was a normal part of relationships with men. For many young women sexual coercion and forced sex were the norm, for some the only type of sexual activity they had known since becoming sexually active. They described relationships with men where the dividing line between commercial and non-commercial sex was very blurred. Whether driven by poverty or motivated by a desire for consumer commodities or an opportunity to be taken out for dinner at a fancy beachfront hotel, young women engaged in activities that put them at direct risk for HIV. There was a shared understanding among both young men and women that a woman’s sexuality was a valued resource, and that any man with whom a woman shared that resource was implicitly expected to thank her with some kind of financial gift, favour or kindness. Condom use was reported to be very limited and inconsistent. Intergenerational relationships, where young women liaised with older men, often yielded the highest financial rewards and were not uncommon. In such relationships women were reluctant to suggest safe sex. The large age disparity served to increase their vulnerability to both sexual violence and HIV infection (Leclerc-Madlala 2002, 2003). After completing the evaluation study of that particular AIDS programme, I went on to conduct ethnographic study of local constructions of gender and HIV/AIDS in KwaZulu-Natal. What emerged most clearly from the research evidence was that notions of gender and the various expressions of gender inequality were major underlying drivers in the local spread of HIV. Research findings from studies undertaken in other communities throughout the Southern African region reveal that the social drivers of HIV, including common prescriptions for gender, are similar. Currently Southern Africa is home to the only countries in the world where over 20 per cent of the adult population is HIV positive, those being Botswana, Lesotho, Zambia, Zimbabwe, Namibia, Swaziland and South Africa (UNAIDS 2006). Women and girls account for over 57 per cent of people living with HIV in the region, and in the age group 15–24 years they represent more than 75 per cent of those infected. According to global bodies such as the WHO and UNAIDS sexual violence is a primary contributor to the region’s high rates of infection (United Nations 2004). In South Africa the real rate of rape (as opposed to the official, government-approved rate), is estimated to be just under 2 million per year, or one every 30 seconds (Smith 2004). There are indications that the victims of sexual violence are becoming increasingly younger, with nearly half (42.7%) of reported rapes for 2005 involving minor children (Canham 2006). Smith (2004) has reported that in the country’s largest urban township of Soweto, 90 per cent of rapes are committed against children under 12.

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The arguments put forth in the literature on gender and HIV/AIDS from the early 1990s up until today have a particular resonance and validity in the current context of Southern Africa’s hyper-epidemic. Empowering women and creating more equitable and enabling social contexts in which women have choices and are able to exercise those choices seems pivotal to the fight against HIV/AIDS. Currently there is growing acknowledgement in global bodies such as UNAIDS and WHO on the need to re-focus HIV prevention efforts away from individual behavioural change in favour of promoting more fundamental social change. What is required to reverse the epidemic and sustain HIV prevention in the Southern African region is a social movement that aims to dislodge embedded ideologies that endorse male privilege and foster female vulnerability. Current regimes of gender inequality that make the region’s women and girls so hugely vulnerable to HIV/AIDS and violence must be challenged, and they must be challenged by society as a whole.1

Silence and alliance By most accounts, and in accordance with international definitions, the women’s movement throughout Southern Africa is weak. This is not to say that women’s activism in the region has been non-existent, either historically or more recently. Back in 1956 a group of 20 000 South African women marched on the apartheid government’s Union Buildings to demand an end to oppressive laws that required them to carry passes in urban areas. The enemy then was the apartheid system. Any feminist aspirations at the time were necessarily subordinated by the need to maintain solidarity with all the oppressed, women and men. Basu (1995) has argued that the ‘politics of alliance’ in many post-colonial or post-authoritarian countries often precluded women from establishing the type of autonomous structures theoretically required to advance a ‘woman’s movement’ as separate from a liberation or nationalist movement. According to Anthias and Yuval-Davis (1989) nationalism enables women’s entry into the public sphere but it rests upon a profoundly gendered model of political society. Nationalism, it would seem, is in many respects a double-edged sword for women. In South Africa, women’s eagerness to put gender issues on the agenda for democratic transition resulted in the formation of the ‘Woman’s National Coalition’ in 1992. According to some observers this initiative was the closest that South Africa, or the region more generally, has come in recent times to a strong woman’s movement (Hassim 2005). Established by the African National Congress’s Woman’s League headed by Winnie Mandela, the Women’s National Coalition consisted of a broad front of women’s organizations brought together with the singular purpose of drafting a ‘Women’s Equity Charter’ in the run-up to democratic elections. The broadness of the Coalition was both a strength and a weakness for the new movement. Tensions began to emerge before the transition of 1994,

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with critics accusing the Coalition of being urban-biased and dominated by middle-class, educated, white women. Moreover, because it was led by women based in political parties, after elections many of the Coalition’s leaders moved into state structures. Shortly after 1994 the Coalition collapsed, leaving in its wake a loose collection of heterogeneous organizations that today operate in distinct arenas as networks or coalitions, community-based organizations, or national policy advocacy groups. Concurrent with the collapse of the Coalition and the decline of the women’s movement in the post-1994 democratic period was the rapid increase in HIV infection rates and the growth of the HIV/AIDS epidemic. Not having been adequately addressed by the Mandela government, President Mbeki became heir to an HIV epidemic that was in the process of its own transition; transitioning from an epidemic of largely invisible HIV infection into an epidemic of highly visible AIDS-related sickness and death. As the 1990s drew to a close public outcry against government’s mediocre response to the disease could no longer be ignored. By the close of the 1990s the media was carrying regular (as opposed to intermittent) reports about the disease. Radio, television and print media started to examine the impact of AIDS on people’s lives and the wider implications of the epidemic for the economic development of the Southern African region as a whole. The marked increase in media coverage of HIV/AIDS at that time was matched by an increase in reportage of all manner of gender-based violence. In addition to being declared the ‘rape capital of the world’ by Human Rights Watch in 1995, South Africa had also gained notoriety by the turn of the century as the world leader in ‘intimate femicide’, whereby a woman is killed by her intimate partner ( Jewkes and Abrahams 2000). Reports about the rape of children and babies, some as young as three months, were not uncommon features on the evening television news. Fear of rape quickly became, and remains, a major source of anxiety for South African women and girls. Among other things, the heinous trends led researchers to ponder and examine the relationship between the country’s high rates of gender-based violence and the high rates of HIV/AIDS. One woman journalist who dared to draw attention to the extreme degree of rape in South Africa and suggest a link with the AIDS epidemic was Charlene Smith. In an article published in one of the country’s leading weekend newspapers entitled ‘Rape has Become a Sickening Way of Life in our Land’, Ms Smith presented nation-wide statistics on the rape crisis for the year 2004. A former member of the African National Congress and an ally of President Mbeki during the long battle against apartheid, Ms Smith (a white woman) hoped that her article would provoke a national debate on the subject and contribute towards the search for solutions. But alas, the President’s reaction to Ms Smith’s article revealed the extent to which Mbeki’s denialist views on AIDS extended to his views on other serious issues affecting his country, including rape.2

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Race or gender? President Mbeki’s response to Ms Smith’s article was nothing short of explosive. He used the web site of the governing African National Congress to launch a searing attack on Ms Smith, accusing her of perpetuating the image of black men as ‘savage beast, unable to control their sexual urges (LaFraniere 2004: 2)’. He went on further to add: I, for my part, will not keep quiet while others whose minds are corrupted by the disease of racism accuse us, the black people of South Africa, Africa and the world as being, by virtue of our Africanness and skin colour, lazy, liars, foul-smelling, diseased, corrupt, violent, amoral, sexually depraved, animalistic, savage and rapist. In the succeeding month the debates sparked by Ms Smith’s article on rape had almost nothing to do with rape. An issue which many perceived to be predominantly a gender issue, had quickly been turned into a race issue. The deafening silence on the part of black women and their unwillingness to either come to the defense of Ms Smith or try to redirect public attention to the issue of rape, was marked. Only one black woman, a local human rights activist, ventured a public opinion on the matter. According to her, Mbeki was obsessed with his own notions of race and was far too touchy about issues of black male sexuality. As a result, she believed the President was less than enthusiastic about fighting sexual violence and AIDS.3 Any hope of sparking a national debate on rape or a national debate on the relationship between sexual violence and HIV/AIDS quickly faded with Mbeki’s response to the Smith article. The message from the presidency was clear: any mention of anything that might allude to colonial stereotypes of black male sexuality could be expected to be met with accusations of racism and a sharp personal attack by the state president on one’s character. Who would dare to take such a risk at a time when the political climate was becoming increasingly unwelcoming to criticism? Very few people spoke up, most especially very few black women who were expected to be loyal to the ‘politics of alliance’ that tied their aspirations to those of their black male comrades. Mbeki’s reaction also served to draw attention to on-going debates about the western roots of feminist ideology and the lack of consensus on what constituted ‘African feminism’. Like colonial constructions of black sexuality, this was the type of knowledge that could be used by the president to undermine efforts to unite local women around gender issues. By his strong objection to Ms Smith’s article and his denial of a rape problem in South Africa, some of the motivations behind Mbeki’s failure to provide leadership on AIDS were revealed. His statements at the time appeared to be aimed at helping to ensure that a women’s movement that reached beyond racial

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divides and placed issues of sexual violence and HIV/AIDS at the centre of a broad-based social movement would be difficult to realise.

Dismayed but not discouraged Women may have retreated from public debates on matters that clearly irked the state president, but back in their individual structures and organizations there were signs of a growing determination by women of all races to assert gender and sexual rights. From the start of 2005 there was seldom a meeting of feminist-minded people where the need for a strong woman’s movement was not discussed. In June of that year, 50 women AIDS activists organized a workshop in Durban to discuss women and AIDS issues.4 Among the topics debated over the two days were the problem of sexism in the AIDS activist sector and the marginalization of all issues affecting women infected and affected by HIV/AIDS. Of major concern for women activists was the lack of clear gender policies in AIDS organizations, the under-representation of women in the leadership of these organizations, the lack of focus on womenspecific HIV prevention and treatment issues, and the lack of space for women in organizations to talk about and challenge gender issues within the sector. What emerged from this workshop was a consensus that women needed a space to strategize collectively about how best to challenge gender ideologies and dynamics in the context of an HIV/AIDS epidemic that is disproportionately affecting them. The meeting closed with the formation of a women’s network called ‘WoMandla AIDS Network’ that committed itself to addressing the entire scope of gender issues in relation to AIDS. Another significant meeting was called in 2005 by two of the country’s top organizations working in the gender-based violence sector. The aim of this meeting, hosted by the Centre for the Study of Violence and the Tshwaranang Legal Advocacy Center in Johannesburg, was to draw-in representatives and members of the HIV/AIDS sector in order to develop joint initiatives for addressing the intersection of AIDS and gender-based violence. The need for a feminist movement against these two epidemics was clearly articulated during this meeting. Some of the views expressed by participants included the following: We’ve been doing the same interventions that we started 10 years ago. Its time to stop networking for the sake of networking. We need to move to mass mobilization. (C. Edwards, KwaZulu-Natal Network for Violence against Women) The gender sector has been neutralized with democracy. Its time for a revival and mobilization . . . and sustained lobbying of policy makers. (S. Meintjies, University of Witswaterand)

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Women need to wake up and see that our men’s refusal to go for HIV testing and wear the condom is actually a domestic violence issue. Where is the legislation that protects us against this? (H. Combrink, Community Law Centre)

Zuma as trigger With the start of 2006, feminists throughout the country were focusing their attentions on identifying ways to promote the development of a grassroots woman’s movement. Among the strategies that required identification were strategies to promote the participation of ordinary working-class women, most especially those from rural areas for whom dictates of culture and custom often justified their subordination and increased their vulnerability to both HIV/AIDS and gender-based violence. There was wide agreement in feminist circles that much more work needed to be done to conscientize rural women about their human rights and about gender issues in general. The declaration by the UN of 2006 as the year for ‘HIV Prevention Acceleration’, coincided with the 50th anniversary of the South African Women’s Anti-Pass March. Women’s arguments about the need to revive the women’s movement in the region were bolstered by the stark realities of women’s extraordinary and growing suffering due to AIDS. The idea that HIV/AIDS would never be adequately addressed without empowering women had slowly come to establish itself among many of the region’s feminist intelligentsia, AIDS activists, and AIDS researchers and policy strategists. By 2006 the challenge was not so much about demonstrating how women’s lack of power and women’s vulnerability to HIV were linked, but rather about finding appropriate triggers that would arouse local women to take action to demand the realization of their rights as protection against AIDS. In March of that year the rape trial of former Deputy President Jacob Zuma provided such a trigger (see also Chapters 10–11). A charismatic figure of South Africa’s liberation struggle, Mr Zuma had recently been fired as deputy president after being indicted on bribery charges and soon thereafter had been accused of raping the daughter of a family friend. As part of his testimony 64-year-old Zuma said his accuser, a 31-year-old HIV-positive AIDS activist, had signaled a desire to have sex with him by wearing a knee-length skirt to his house and sitting crossed-legged, revealing her thigh. Claiming the privileges that patriarchal Zulu traditions bestow on men, Zuma said he was actually obligated to have sex, seeing that his accuser was aroused. Zuma stated that according to Zulu culture a man cannot just leave a woman if she is aroused because denying her would be tantamount to rape. Zuma believed that his chances of contracting HIV were small because he had taken a shower after sex to minimize his risks.

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Burn the bitch While much public attention was given to Zuma’s insistence that his testimony reflected traditional values, of greater significance to the emerging AIDS feminism were the statements and comments made by women supporters who gathered outside the court building during the trial. Burning incense on the roadside in an effort to solicit supernatural support for the case, Zuma supporters bore witness to the persistence of traditional views and patriarchal mindsets in a country that boasts one of the world’s most progressive Constitutions. It was the women supporters who, by revealing the degree to which women had internalized their own oppression, also revealed the extent of the work that would be required for a women’s movement to take root. During the trial women supporters of Zuma burned pictures of the accused and danced while shouting ‘Burn the bitch!’ ‘Throw her in jail!’ ‘Come rape us Zuma!’ These women insisted that by exposing such a private matter and laying a rape charge the accuser was actually the criminal in this case, guilty of tarnishing the reputation of a respected leader. The aggressive tenor of the comments and actions by these women sent a strong signal to other women that they would face considerable social pressure should they decide to speak out on sexual violence or related matters. Women who transgressed the ‘boundaries of silence’ as defined by the existing patriarchal order could expect to be insulted, degraded, and portrayed as attention-seeking traitors. The normativeness of sexual violence in the lives of South African women and the common understanding that rape is something to be quietly tolerated was neatly portrayed in a statement made by one of the women supporters who said: ‘Rape, rape, what rape? We’ve all been raped. Why is she complaining? Who does she think she is?’ While progressive-minded people found this display of female support for an unapologetic rapist to be deeply disturbing, the Zuma trial served to rivet public attention to the twin epidemics of sexual violence and HIV/AIDS like nothing else before. News of the trial was reported throughout the region, provoking what could be described as a ‘show-down’ between the forces of conservative patriarchy on the one hand and the forces of liberal and radical feminism on the other. The need to lend support to the rape victim resulted in the launch of the ‘One in Nine Campaign’ by seven women’s rights and AIDS organizations. The campaign was named as a reminder that only one in every nine local women who are raped actually report the rape. The campaign message was, and remains, an encouragement to all women that they must continue to speak out against sexual crimes, despite the backlash by those determined to protect the gender status quo. The Zuma trial was a defining moment in the evolution of feminism in Southern Africa. The public nature of the trial and the fact that it was a black woman accusing a black man of sexual violation provided a unique opportunity for observing the role of women in maintaining patriarchy, the wide occurrence and common acceptance of rape and violence, and the

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entrenched nature of misogyny and gender inequality in society. The trial prompted leading women members of the ruling political party to issue an immediate Call to Action. Meeting at the time to examine the role of women in building peace and well-being, the ‘Call to Action’ called on women to take back their lives. It stated: South Africa is a country at peace. How is it possible then that the country’s rape and abuse statistics reflect those of a country in conflict, in a war zone? As women of this country, from all walks of life, across race and class, we cannot keep silent any longer.5

Conclusion The Zuma rape trial has been the singular most important recent event to give momentum to the cause of gender equality in the region. With calls to revive the South African Women’s movement having grown steadily over the past several years, the fervent feminist sentiment unleashed by the rape trial has ensured that the movement’s decline in the early phase of democracy will not be allowed to continue. During the various local celebrations that marked the 9 August 2006 National Woman’s Day and the 50th anniversary of the Woman’s Anti-Pass March, a renewed spirit of determination was noticeable. For the very first time since political transition in 1994, African women’s voices were the most audible in demanding an end to the gender power imbalances that give men privileges and curtail women’s autonomy. Writing in a popular weekly newspaper on the eve of Woman’s Day, Pumla GobodoMadikizela (2006: 25), a Cape Town academic, stated bluntly: ‘The enemy is no longer apartheid. The enemy is an old system that unites women across color and class lines – the system of patriarchy.’ If gender issues were once sidelined by a focus on the ‘bigger’ issues of racial oppression and political liberation, and if the women’s movement was once hampered through the politics of alliance that was necessary for mobilization against apartheid, current trends are towards a new autonomy for women. On National Women’s Day 2006 the ‘Progressive Women’s Federation’ was launched. This launch marked the beginning of an organization for women and led by women, representing a symbolic break from struggle-era alliance politics. A decade after democratic transition, South African women have come to see the need for a dedicated women’s movement to address gender issues, with sexual violence and HIV/AIDS being central gender issues needing urgent attention. While women’s political activism may have been enabled by the larger struggle against apartheid in South Africa or colonial, racial or class oppression more generally throughout the region, calls during this current phase of democracy are for women to stand together as women. This change has been widely welcomed by feminists in the region. Fighting against a long history of patriarchy with its traditions of patrilineal descent,

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polygamy, wife-inheritance, bridewealth exchange, virginity testing, widow cleansing and many other customary practices that reflect social values for male dominance will not be easy. The forces that maintain social and cultural oppression are often more insidious than those that maintain political oppression. Yet by not challenging these things and allowing the existing social order to persist allows for the twinned scourges of sexual violence and HIV/AIDS to persist. Southern African women could make a difference by harnessing their collective strength, courage and determination to fight for a better future. From the perspective of many, an independent women’s movement, strategically positioned to challenge the norms of gender inequality that drive the region’s hyper-epidemic, is possibly the only thing that can turn the tide of HIV/AIDS in this part of the world. Should the Progressive Women’s Federation prove unable to spark a broad-based women’s movement in Southern Africa, the global feminist alliances and regional networks that have been forged in recent times are now of such a density that they cannot be easily dissolved. The agenda for gender equality, globally and locally will only move forward. Feminism as a transnational social movement given expression through local women’s determination to realize their human rights will not be easily crushed by the failure of one particular organization. Neither will it be crushed by the personal sensitivities of any particular state president, present or future. The rape trial of Jacob Zuma, a popular liberation hero, political comrade and presidential hopeful, was an especially sharp and clear clarion call for women to rethink their alliances in the post-democratic era. If it took this trial to provide the proverbial ‘straw that broke the camel’s back’, spurring women to confront the gender power imbalances that have allowed HIV/AIDS and sexual violence to reproduce themselves so seamlessly throughout the region, then something very good has come out of it. For an emerging AIDS feminism, this rape was the right rape at the right time.

Notes 1. Using social levers to promote societal change as opposed to individual behavioural change formed the core of discussions at the recent UNAIDS expert think-tank meeting on Behavioural Change and Prevention of HIV, held in Geneva 24–26 September 2006. Addressing gender inequalities in Southern Africa was viewed as a vital component of societal change for a more effective response to HIV prevention in the region. 2. For further discussion on Mbeki’s denialist views see Mbali (2003) and Ek (2005). 3. The black woman activist in question was Rhoda Kadali, a journalist, as quoted in LaFraniere 2004. 4. The workshop was organized by the Gender AIDS Forum and the Centre for Civil Society, University of KwaZulu-Natal. It took place on 5–6 June, 2005.

154 The Politics of AIDS 5. The ‘Call to Action’ was issued on 10 March 2006 by women meeting at the ‘Women Leading the Way: Health, Wealth and Peace Conference’ held at the Gordon Institute of Business Science, Johannesburg.

References Anthias, F. and Yuval-Davis, N. (1989), Women-Nation-State. London: Macmillan. Basu, A. (ed.) (1995), The Challenge of Local Feminisms: Women’s Movements in Global Perspective. Boulder: Westview Press. Barnett, T. and Whiteside A. (1999), HIV/AIDS and Development: Case Studies and a Conceptual Framework. Norwich/Durban. Barnett, T. and Whiteside, A. (2002), AIDS in the Twenty-First Century. Disease and Globalization. London and New York: Palgrave Macmillan. Bledsoe, C. (1990), ‘The Politics of AIDS, Condoms and Heterosexual Relations in Africa. Recent Evidence from the Local Print Media’, in Penn Handwerker, W. (ed.), Births and Power: Social Change and the Politics of Reproduction. Boulder: Westview Press. Canham, T. (2006), Child rape: shock figures. Sunday Tribune, 1 October 2006. Connor, C. (2005), A Feminist Challenge: Women’s Experiences in the Treatment Action Campaign in KwaZulu-Natal. School for International Study, Research Project. University of KwaZulu-Natal, South Africa. Ek, A.-C. (2005), ‘Perilous silence and discriminating visibility’, in Follér, M.-L. and Thörn, H. (eds), No Name Fever: AIDS in the Age of Globalization. Göteborg: Studentlitteratur. Gobodo-Madikizela, P. (2006), ‘Time for women to make history yet again’, Mail and Guardian, 4–10 August: 25. Haram, L. (1996), ‘The Gendered Epidemic: Sexually Transmitted Disease and AIDS among the Meru People of Northern Tanzania’, in Bergstrom, S. and HolmbeeOtleson, G. (eds), Reproductive Health Research in Developing Countries, Summary Report No. 4. Centre for Development, Oslo: University of Oslo Press. Hassim, S. (2005), ‘Voices, Hierarchies and Spaces: Reconfiguring the Woman’s Movement in Democratic South Africa’. Paper presented at Centre for Civil Society seminar, 26 August, University of KwaZulu-Natal, Durban. Ingstadt, B. (1990), ‘The Cultural Construction of AIDS and Its Consequences for Prevention in Botswana’, Medical Anthropology Quarterly 4: 28–40. Jewkes, R. and Abrahams, N. (2000), Violence against Women in South Africa: Rape and Sexual Coercion. Johannesburg: Medical Research Council. LaFraniere, S. (2004), ‘After Apartheid: Heated Words about Rape and Race’, New York Times, 24 November. Leclerc-Madlala, S. (2002), ‘On the Virgin Cleansing Myth: Gendered Bodies, AIDS and Ethnomedicine’, African Journal of AIDS Research 1: 87–95. Leclerc-Madlala, S. (2003), ‘Transactional Sex and the Pursuit of Modernity’, Social Dynamics 29(2): 213–33. Mbali, M. (2003), ‘HIV/AIDS Policy Making in Post-Apartheid South Africa’, in Daniel, J., Habib, A. and Southall, R. (eds), The State of The Nation 2003–2004. Cape Town: Human Sciences Research Council. McGrath, J., Rwabukwali, C., Schumann, D., Pearson-Marks, J., Nakayiwa, S., Namande, B., Nakyobe, L. and Mukasa, R. (1993), ‘Anthropology and AIDS: The Cultural Context of Sexual Risk Behaviour among Urban Women in Kampala, Uganda’. Social Science and Medicine 36: 429–39.

Suzanne Leclerc-Madlala 155 Mthathi, S. and Richter, M. (2006), ‘The Need for AIDS Feminism’. Paper presented at XVI International AIDS Conference, 13–18 August. Toronto, Canada. Obbo, C. (1993), ‘HIV Transmission: Men are the Solution’, in James, M. and Busia, A. (eds), Theorizing Black Feminisms: The Visionary Pragmatism of Black Women. London: Routledge. Richter, M. (2005), ‘A new feminism’, Mail and Guardian, 9–14 December: 19. Southern African Development Community (2006), Expert Think-Tank Meeting on HIV Prevention in High-Prevalence Countries in Southern Africa. Gaborone: SADC Secretariat. Schoeph, B. (1992), ‘Women at Risk: Case Studies from Zaire’, in Herdt, G. and Lindenbaum, S. (eds), The Time of AIDS – Social Analysis, Theory, and Method. London: Sage. Smith, C. (2004), Powerful without Authority: Sexual Violence in South Africa. Human Science Research Council Report, Johannesburg: HSRC Press. Udvardy, M. (1995), ‘The Lifecourse of Property and Personhood: Provisional Women and Enduring Men of the Giriama of Kenya’, Research in Economic Anthropology 16: 325–48. Ulin, P. (1992), ‘African Women and AIDS: Negotiating Behavioural Change’, Social Science and Medicine 34: 63–73. UNAIDS (2004), Women and HIV/AIDS: Confronting the Crisis. Geneva: United Nations. UNAIDS (2006), Towards Universal Access 2010 in East and Southern Africa: A Status Report. Geneva: United Nations. United Nations (2004), Task Team Report on Women and Girls in Southern Africa. New York: United Nations. Wilton, T. (1997), EnGendering AIDS – Deconstructing Sex, Text and Epidemic. London: Sage.

10 ‘Brothers are Doing it For Themselves’: Remaking Masculinities in South Africa Steven Robins1

Introduction The AIDS pandemic in South Africa has contributed towards prising open questions on sexuality and sexual rights in ways that were unprecedented in the past. Partly as a result of exposure to HIV/AIDS prevention programmes driven by the international health agencies, the state, NGOs and social movements such as the Treatment Action Campaign (TAC), parents and politicians are increasingly compelled to talk openly about sex and sexual rights in the home and in public domains. Meanwhile gender, gay, AIDS and anti-rape activists have responded to the pandemic by highlighting the need to activate and realize the gender and sexual rights provisions in South Africa’s progressive Constitution. However, the AIDS pandemic and the promotion of new sexual and gender rights have also triggered a conservative backlash from religious leaders and ‘traditionalists’. So, while social movement, NGOs, and public health responses to the AIDS pandemic may have contributed towards a ‘sexual revolution’ in terms of which formerly taboo topics on sex have morphed into morally respectable subjects for discussion and debate in both private and public spaces, this had not translated into the realization of the sexual and gender equality as envisaged by the architects of the constitution. It is within this contested setting that new forms of AIDS activism and sexual citizenship are emerging. Modern democracies everywhere are increasingly concerned with questions of sexual equality between homosexuals and heterosexuals, as well as between men and women (Fassin 2006: 92). ‘The politicization of sexuality’, Eric Fassin concludes, ‘partakes in a broader process of denaturalisation of the social order [and is] therefore an object of democratic debate. . . This is why sex is the [latest] frontier in the democratic definition of our societies’ (Fassin 2006: 92). In South Africa, the AIDS pandemic, same-sex marriage legislation, gender equity policies, and high profile sexual harassment cases all contributed towards the sexualization of politics and the politicization of sexuality. In 2006 the media reported on a number of high profile sex scandals 156

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that involved senior politicians and government officials. The expulsion of former African National Congress (ANC) chief whip Mbulelo Goniwe from parliament and party structures in 2006 appeared to signal a ‘zero tolerance’ policy towards sexual harassment. It also signalled the growing influence of gender and sexual equality activism within the ANC. The ANC government’s promotion of same-sex marriage legislation in 2006 in the face of strong conservative opposition was another indication that sexual equality was becoming a new frontier of democratization in post-apartheid South Africa. The vigorous public debates in response to the 2006 Jacob Zuma rape trial also revealed the degree with which sexual politics has become visible in the public sphere after apartheid (Robins 2008, forthcoming; Suttner 2008, forthcoming; Vetten 2007; Reddy and Potgieter 2006). This chapter will focus on these post-apartheid sexual developments in relation to, the establishment of Khululeka a community-based HIV men’s support group in Gugulethu, Cape Town. This case study investigates innovative attempts by a group of young men in Cape Town to develop new understandings of masculinity in a time of AIDS. Khululeka, is an offshoot from the AIDS social movement Treatment Action Campaign (TAC). It was formed largely in response to the belief by its founder, Phumzile Nywagi (see Robins 2006), that township men are conspicuously absent from public clinics and HIV/AIDS support groups. Whereas TAC tends to be a predominantly rights-based movement largely consisting of women, Khululeka has attempted to address men’s issues, including dominant male sexual cultures. It has emerged at a time when men are increasingly singled out in the media and popular discourse as the source of sexual violence and HIV infection. Rather than romantizing these initiatives as interrogations of ‘traditionalist’ masculinities, or portray them as heroic counter-hegemonic ‘alternative masculinities’ (Connell 1993; Cornwall and Lindisfarne 1994) or forms of ‘resistance from below’, a close reading of the accounts of Khululeka members reveals deeply ambivalent responses to ‘hegemonic masculinities’.2 The case study raises a number of questions. For instance, how similar are Khululeka’s calls for ‘sexual responsibility’ from those promoted by public health professionals, global health agencies, religious conservatives and traditionalists? What are the implications of these discourses on sexuality, rights and responsibilities for responding to HIV/AIDS and for furthering our understandings of post-apartheid politics, citizenship, and liberal democracy? Before discussing Khululeka, I will use the Zuma trial as a lens onto dominant masculinities in South Africa.

‘The Zuma Affair’: A lens onto hegemonic masculinities? Watching the unfolding court saga, my eyes remained fixed on you [ Jacob Zuma, the rape accused]. My ears have been pinned to the radio and I have scanned the papers for a sign that you are aware of the power

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you command. I have waited, in vain, for an indication that you understand the burden of that power and that you will exercise it wisely and judiciously. . . . Outside, your supporters were burning her effigies and she [the rape accuser] was physically threatened. If you see yourself as a father figure in the struggle, what message does the actions of your supporters, and the strategy adopted by your defence, give to South Africans? What guidance does the behaviour of your legal team give us at a time when we are trying to transform our legal framework, and build a society that cares for every human being, especially the most vulnerable? (Nomboniso Gasa, Mail & Guardian, 17 March 2006) I align myself with Zuma’s fight to be accorded respect and dignity, not least by the partisan character assassins masquerading as the media, by certain women’s groups and, lately, by a nebulous bunch calling itself ‘the bishops of the Methodist Church’. . . . In Gasa’s view, the little angel who claims she was ‘raped’ by Zuma can do no wrong. Gasa attempts all sorts of convoluted ‘reasoning’ to excuse the glaring defects of the sainted ‘raped’ woman, while never giving the accused the benefit of the doubt . . . Whether or not Zuma is acquitted, his enemies and the little angel have ‘won’ because his integrity and character have been rubbished almost beyond repair. ( Jon Qwelane, Boksburg, Mail & Guardian, 7 April, 2006) The rise of AIDS, gay and gender activism has contributed towards transforming ‘private’ sexual matters into contested public concerns.3 This ‘clash of values’ around sexuality was very evident in Jacob Zuma’s rape trial in May 2006 (see also Chapters 9 and 11). During the trial, which was held in the Johannesburg High Court, the former Deputy President and his defence counsel argued that the rape accuser had seduced Zuma by wearing ‘revealing clothes’. The clothing referred to here was the kanga, a traditional African cloth that is worn in villages throughout sub-continent. As the Mail & Guardian reporter Nicole Johnston pointed out the African kanga ‘has been the hallmark of female modesty and respectability [and is] handed out at political rallies emblazoned with slogans and the faces of political leaders’ (Mail & Guardian, 5 May 2006: 2). During the trial, however, the mundane cotton kanga was sexualized and transformed into an object of seduction, much like the infamous cigar during the Monica Lewinsky and Bill Clinton scandal. Responding to what they perceived to be a systematic attempt to discredit the rape accuser and portray her as an unscrupulous seducer, a small group of gender and anti-rape activists from the People Opposing Women Abuse (POWA) faced a huge crowd of jeering Zuma supporters when they demonstrated outside the Johannesburg High Court dressed in cotton kangas. As the journalist Johnston concluded, they were demonstrating to ‘re-appropriate their right to wear the kanga – anywhere, any time’ (Mail & Guardian, 5 May 2006: 2).

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Zuma was ultimately acquitted by Justice Willem van der Merwe, and the complainant was portrayed by Zuma’s legal counsel, and his supporters, as a psychologically disturbed, manipulative seductress, pathological liar and serial rape accuser. In his ruling, the Judge lashed out at the media, activists and Zuma supporters for prejudging the case and being more interested in sexual and gender politics than the actual evidence presented in the rape case. The Judge chastised pressure groups, NGOs, governmental organizations and the media for having ‘breached the sub judice rule’.4 In the preface to his 174page judgment delivered in the Johannesburg High Court on 4 May 2006, the Judge argued that ‘it is not acceptable that a court be bombarded with political, personal or group agendas and comments. As one contributor to a daily newspaper very correctly put it: ‘This trial is more about sexual politics and gender relations than it is about rape.’ In his final concluding statement, the white Judge also lambasted Zuma for having unprotected sex with an HIV-positive woman and being unable to control his sexual desires. Paraphrasing Kipling, Judge van der Merwe concluded, ‘If you can control your sexual urges, then you are a man, my son’.5 This statement revealed how lingering colonial legacies of racial paternalism continued to discursively link sex, gender and race in post-apartheid in South Africa. For media commentators and gender activists, the trial was a lens onto a deeply embedded authoritarian culture of patriarchy, misogyny, and sexual violence. However, few commentators reflected on the historical transformations that produced these cultural forms and social practices (see below). Instead, commentary was focused on the visceral immediacy of events inside and outside the court. For example, journalists covering the daily demonstrations outside the Johannesburg High Court reported on Zuma supporters who burnt photographs and effigies of the rape accuser and chanted ‘burn the bitch’.6 Zuma’s supporters, many of whom wore ‘100% Zulu Boy’ T-shirts, were also accused of intimidating anti-rape activists protesting outside the court. The latter had launched a ‘One in Nine Campaign’ to draw attention to the fact that so few women are prepared to report their rapes to the police. Rape activists highlighted the fact that there were 55 000 reported cases of rape in 2004/05 whereas the South African Law Reform Commission had provided estimates of 1.69 million rapes per year.7 Gender activists also questioned the judge’s decision to permit the defence to lead testimony on the complainant’s ‘sexual history’, a decision that activists believed was designed to demonstrate that she had a history of false rape accusations going back to her childhood. As Nomboniso Gasa, a gender and political analyst, put it: We are told that the ‘sexual history’ of this person is being probed to show her lack of credibility as an accuser. In reality, what we have witnessed has been the rehearsing of a series of painful episodes in her life. You replicated your favourite song ‘give me my machine gun’ and discharged fire without

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any holds barred. You have not only fed into the most backward sections of South African law, but you have deployed your training as an armed fighter in that arena against an unarmed individual. Are the weapons you have deployed compatible with that vision and appropriate to the target?8 The judge thoroughly dismissed the complainant’s evidence, and completely endorsed Zuma’s claim that he had consensual sex at his home in November 2005. There was no room for any consideration of sexual ambiguity, which is often the result of such unequal power relations, in this judgment. Activists argued in the press that the judgment, and the treatment meted out to the rape accuser by Zuma’s supporters, would simply reinforce this ‘one in nine’ syndrome among rape victims. After the judgment against the ‘kanga-clad seductress’, gender activists appeared to have even stronger grounds for believing the judicial system would continue to be perceived by rape victims to be unsympathetic to their predicament. Some activists also claimed that the relentless crossexamination of the complainant by Zuma’s defence lawyer constituted ‘secondary rape’ of the victim by the criminal justice system. Zuma’s acquittal, they argued, would also be interpreted by many of his followers as vindication of their patriarchal beliefs and claims that women are predisposed to fabricate rape in order to access money and power. It was not only the gender activists who were enraged by Zuma’s sexual behaviour. Zuma had also angered AIDS activists with his court testimony that he had sex without a condom with an HIV-positive woman because he had calculated that the risk of infection was low. Zuma also told the court that by showering after he had sex with the rape accuser he intended to reduce the risk of infection. According to AIDS activists, these statements contributed towards widespread confusion and misinformation about HIV/AIDS, including the proliferation of AIDS myths, dissident theories, and popular beliefs that sex with virgins could cure AIDS and that the disease was caused by witchcraft (Robins 2004).9 Gender and AIDS activists and media commentators argued that Zuma’s trial highlighted the deeply entrenched character of patriarchy in South African society. They also claimed that the trial reflected the dismal failure of the national political leadership to confront sexual violence and HIV/AIDS. After all, Zuma had been the president of both the Moral Regeneration Campaign and the South African National AIDS Commission (SANAC), government bodies that activists regarded as entirely ineffectual. These failures of government were perceived to be especially disturbing in a country with a ‘rape pandemic’ and an estimated 5.5 million people living with AIDS.10 So, notwithstanding a progressive constitution that promised sexual rights and gender equality, as well as better health care for all, there seemed to be deeply embedded social and cultural barriers in the way of realising these rights.

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Illustration 10.1 ‘Guilty’. Cartoon by Zapiro

Performing ‘Zulu manhood’: sexual rights versus sexual cultures? During the liberation struggle questions of sexuality and sexual rights were generally sidelined and subordinated within anti-apartheid political discourse. By 2006 this had significantly changed, and sexual politics seemed to be on the rise. For example, Judge van der Merwe claimed that media commentators, gender activists and Zuma supporters had transformed the trial into a public drama about sexual politics. The trial was also transformed by the media into a morality tale that ending up reinforcing racist stereotypes about ‘sexually irresponsible’ African men. Such representations of African sexuality had been vehemently contested by President Mbeki. In fact, the President’s AIDS denialism seems to have been fuelled by his belief that AIDS and anti-rape activism reinforced racist ‘western’ ideas about promiscuous and disorderly African sexualities (see Robins 2004).11 Although these troubling questions about ‘African sexuality’ had been vigorously challenged by the President and ANC national leadership, the Jacob Zuma rape trial appeared to re-insert troubling concerns about masculinity squarely within the public domain. In the Johannesburg High Court in May 2006, South Africans witnessed a televised ‘postmodern’ spectacle in which a tribal elder-cum-liberation

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struggle icon performed ‘Zulu traditional masculinity’ for consumption by both the court and the broader citizenry. According to Zuma’s version of ‘African masculinity,’ in Zulu culture ‘leaving a woman in that state [of sexual arousal]’ was the worst thing a man could do. ‘She could even have you arrested and charged with rape’, he told the attentive court. In terms of this logic, he would have violated and disrespected her dignity as a woman had he not had sexual intercourse with her. Addressing the judge as ‘nkosi’ – yenkantolo (the king of the court), Zuma referred to his accuser’s private parts as isibhaya sika bab’wakhe – her father’s kraal. He conceded that he entered ‘the kraal’ without ijazi ka mkhwenyana – the groom/husband’s coat, i.e., a condom. These translations of isiZulu idioms are usually associated with ‘deep’ rural KwaZulu-Natal. To those attending the Johannesburg High Court hearing, and millions of others following the trial through the extensive media coverage, these words signified that Zuma was indeed a ‘real’ Zulu man: ‘100% Zulu boy’ as his supporters’ T-shirts put it. Here again, images of ‘Zulu virility’ seemed to represent and embody a broader post-apartheid political process of African re-traditionalization. It was in his discussion of lobolo (bridewealth) that Zuma publicly performed his ‘Zulu masculinity’ most vividly. In response to questions about two ‘aunts’ who had attempted to initiate lobolo negotiations with the complainant, Zuma answered that he ‘had his cows ready’. As he put it, ‘Lobolo is an issue between the girl . . . and the family. Should [Kwezi] have told these two ladies that “Yes, I want Zuma to pay lobolo”, I would definitely do it.’ This discussion on lobolo sought to valorize timeless conceptions of ‘traditional Zulu masculinity’ and thereby normalize and redeem his sexual behaviour. Zuma’s court statements suggested that he was indeed an authentic Zulu traditionalist. This representation of Zuluness was mediated to South Africans and the wider world via television, radio, the Internet and a local and international press fascinated with primordialist fantasies of Zulu culture. This representation of the ‘100% Zulu man’ was strategic and effective in making the case that the sex had indeed been consensual. Zuma’s behaviour was, after all, how Zulu men are meant to act, so this patriarchal argument went. This particular understanding of Zulu masculinity was self-consciously fashioned and situationally deployed by Zuma in the Johannesburg High Court as a sign of Zulu authenticity and virility. It contrasted starkly with the image of President Mbeki as the (Xhosa) modernist architect of South Africa’s rights-based constitutional democracy that is widely perceived to challenge ‘African culture’ by undermining traditional leadership and promoting gender equity.12 Zuma’s performance of African masculinity was not that different to the ideas about Zuluness and customary law produced by Shepstone and countless other colonial officials. Historians and anthropologists have shown how these historical constructions of ‘tradition’ and ‘customary law’ were produced through ongoing ‘conversations’ between colonial administrators and

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tribal elders (Channock, 1985, Mamdani, 1996; Hamilton 1998). Zuma’s version of Zulu masculinity performed at the Johannesburg High Court was packaged as primordial ethnic essence, and was designed to prop up Zuma’s legal defence of consensual sex. This strategy was no doubt perceived by his legal team to be effective precisely because South Africa is a postcolonial country in which reified conceptions of African culture carry considerable clout in the courts and on the streets. Zuma’s performance of unblemished virile Zulu masculinity in court, as well as his homophobic comments at Heritage Day celebrations in September 2006, mirrored popular perspectives on sexuality, gender and masculinity. This was also a public performance of an essential African identity, thereby reiterating the well-established anthropological point concerning the centrality of conceptions of sexuality and gender in anchoring constructions of cultural identity (Spiegel 1991).13 This also partly explains Zuma’s popularity across a variety of constituencies, social classes and ideological camps, including ‘traditionalists’, the ANC and South African Communist Party (SACP) Youth Leagues and certain sections of the leadership of the popular Left. For Zuma and his supporters within the SACP, ANC, and Congress of South African Trade Unions (COSATU), being a ‘traditional Zulu man’ and a ‘modern revolutionary’ was neither contradictory nor incompatible. Zuma’s renewed popularity within certain sections of the ANC–SACP–COSATU alliance was not only rooted in the patronage possibilities that are likely to emerge should he succeed Mbeki as President, but was also partly the result of Zuma’s capacity to reinvent himself as a ‘man of all seasons’ and ideological persuasions, a post-ideological position that straddled the political binaries of Left and Right, modern and traditional.14 It also reflected the compatibility of the combination of political militancy with social and sexual conservatism. In fact, one of the factors that appeared to unite Zuma’s diverse constituency in the aftermath of the rape trial was the linking of African populism with culturally embedded ideas about ‘traditional’ masculinity and conservative sexual politics.15 Consequently, Zuma’s populism and courtroom performance of ‘Zulu masculinity’ can be clearly distinguished from the liberal modernist and managerialist approach of President Mbeki, a man who was seen to be promoting gender equity and same-sex marriage for gay and lesbian couples.16 The following section focuses on how HIV/AIDS may be creating, under certain circumstances, conditions for some men to begin to reconsider the kinds of ‘traditionalist’ or ‘hegemonic’ masculinities that were so strikingly visible during Jacob Zuma’s rape trial.

HIV and masculinities? It is well documented that South African men tend to stay away from public health clinics, few get tested for HIV, and even fewer join AIDS support

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Illustration 10.2 ‘Zuma’s reputation’. Cartoon by Zapiro

groups. When men do turn up at HIV, TB and STI clinics, they are often labelled by nurses and counsellors as the villains of the piece. They are blamed for being irresponsible in their sexual lives, health and lifestyles. Given that public health clinics are not known for being ‘male-friendly’, it is hardly surprising that clinics in South Africa remain largely women’s spaces. This perhaps also explains why seven out of ten adults accessing antiretroviral therapy (ART) in South Africa are women. Notwithstanding the difficulties of integrating men into the public health system, they are increasingly being exposed to HIV prevention and treatment messages that call for ‘responsible’ sex and lifestyles. This is especially the case for those HIV-positive men who seek treatment. For instance, HIV positive patients at the Medecins sans Frontières (MSF or ‘Doctors Without Borders’) and Western Cape Department of Health primary health-care clinics for infectious diseases in Khayelitsha have to meet a number of criteria to access ART. These selection criteria initially involved three-sessions of counselling, the nomination of a self-selected treatment supporter, participation in a support group, a home visit to validate social circumstances and residency in Khayelitsha, and the signing of a contract with the health services. By 2006 structured counselling continued, support groups and treatment supporters were encouraged but not mandatory, while home visits were only required for patients with social and psychological problems (Coetzee et al. 2004). Patients were also expected to refrain from consuming alcohol and

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drugs, and were encouraged to adhere to healthy diets, life-styles and drug adherence. Notwithstanding the flexibility of the Khayelitsha programme, selection criteria can end up functioning as a form of social triage by screening out and excluding the poorest of the poor, especially unemployed men, who are more likely to have social problems and be vulnerable to drug and alcohol abuse, and hence be perceived to be less ARV adherent.17 The Western Cape Province and MSF treatment programme in Khayalitsha, Cape Town, is an example of a donor-funded programme that has been able to produce exceptionally high levels of drug adherence, even as the programme has expanded (Coetzee et al. 2004). These programmes have also contributed towards profound transformations in patients’ subjectivities and sexual lives (Robins 2006). These changes, which have been promoted through TAC community mobilization and treatment literacy workshops, have contributed towards creating empowered, knowledge and drug adherent patients. By June 2006 over 16 000 people had passed through ART programme in the Western Cape, with almost 4500 receiving treatment at MSF’s three ARV sites in Khayelitsha. TAC and MSF also established a highly successful treatment programme in rural Lusikisiki (formerly Transkei) in the Eastern Cape Province. Many of the protocols and practices developed by MSF and TAC at these highly successful programmes have infused the national ART programme that commenced in April 2004. These kinds of community-based patient mobilization programmes encourage new forms of ‘therapeutic citizenship’ characterized by political claims and demands based on individual responsibility, self-help and ‘caring for the self’ (Nguyen 2005; Foucault, 1997; see also Chapter 15). These projects of self-fashioning can also be considered to constitute new forms of ‘responsibilized’ citizenship’ (see Robins 2006; Barry et al. 1996, Rose and Novas 2005). The ‘targets’ of these HIV prevention and treatment literacy programmes are required to develop new ways of ‘caring for the self’ and being ‘responsible’ in their sexual lives, diets and lifestyles (see Nguyen 2005; Foucault 1997). The life-and-death necessity for these changes, it would seem, can create the conditions for questioning taken-for-granted assumptions about culture, identity and sexuality.18

Khululeka: the making of a men’s support group A few years ago, in an interview with Phumzile,19 he complained to me that Xhosa male circumcision rituals were no longer capable of teaching young men to act responsibly: ‘It’s just pain’ (see Ngwane 2004).20 Reflecting on the role of male initiation in an age of AIDS, Phumzile claimed that most young men returned from initiation as ‘sexually irresponsible’ as they were before they went to ‘the bush’. You know, initiation as it is, it doesn’t mean anything nowadays. It’s just pain, it seems. It doesn’t give any way forward to life. One would just go to

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initiation for the sake of going there. But not knowing the concept traditionally, how our rituals [demand] that you have to change your lifestyle, to know yourself . . . One would go to initiation and come and do the same thing that he used to do. I mean there don’t seem to be regulations around sex. I mean young people can sleep around with who they want. Or am I wrong? The church may say things, but do people listen? Parents may say one thing, but do they listen? Is there any authority, or is it the case that it’s anarchic, and youth can do as they want? For Phumzile, initiation had little impact in terms of producing ‘responsible’ sexual behaviour among young men he knew. Phumzile’s account to me of the ‘failure of initiation’ stemmed from his frustration with counselling men about HIV prevention and treatment. He stated that he preferred counselling women as they, unlike men, took HIV seriously. He also told me about his own high-risk sexual lifestyle and how he became ill as a result of HIV. Phumzile’s illness and treatment experiences (see below) created the conditions for his dramatic changes in his lifestyle. It also created the conditions for other changes in subjectivity, including his commitment to engaging with questions of ‘responsible’ sexual behaviour and masculinity in his personal life and in his community (see Robins 2006). In September 2005, Phumzile established Khululeka Men’s Support Group in Gugulethu, a working class Xhosa-speaking township in Cape Town. Khululeka is an innovative off-shoot of the South African AIDS activist movement, but it departs in significant respects from the organizational forms and objectives of the TAC and MSF. Whereas TAC’s membership is about per cent women, Khululeka is one of a small number of men’s support groups in South Africa. Khululeka focuses exclusively on working class African men, a social group that tends to avoid interacting with the public health system. Khululeka is a Xhosa word for ‘freedom’, ‘to be free’, or, as Phumzile put it, ‘It means to feel free to talk about HIV’. The support group comprised 20 young men, many of whom had participated in MSF and TAC antiretroviral (ARV) treatment programmes in Khayelitsha, Cape Town. It is one of a handful of HIV support groups in South Africa that focus specifically on men’s issues. Khululeka was started in response to Phumzile’s observation that men were virtually invisible in community health clinics and AIDS support groups. All of the members of this group were open about their seropositive status, and their aim was to provide ‘safe sex’ education and treatment literacy in the communities in which they lived. In addition, since most of Khululeka’s members were unemployed, the group wanted to create opportunities for skills training and job creation. The members of Khululeka regarded men as their primary target in their efforts to challenge AIDS stigma and promote healthy lifestyles and ‘safe sex’ practices. They also tackled the issue how problems of unemployment, poverty, and HIV impacted on men’s sense of identity and dignity. According

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to Phumzile, ‘When you are HIV-positive, and on top of that you are unemployed, you can lose everything. Your wife and children don’t respect you because you are sick, without a job and now you cannot provide for them. You are nobody. You are useless. This is why we have created Khululeka, to help men discover their manhood and dignity again’. Themba,21 another Khululeka member stated the following: ‘We saw that men were nowhere to be seen at support groups and clinics. They only visit clinics when they are seriously ill. They also sleep around, drink and smoke too much, and this is a problem when you take ARVs. This is why we decided we need to work with men.’ All of the members of Khululeka live openly with HIV, and they spoke about how disclosure allowed them to ‘feel free’, and that this equipped them, both physically and psychologically, to deal with HIV and AIDS. According to Vuyo,22 ‘AIDS is just a mind game’ and unless you develop the right psychological attitude you will be broken down and lose all strength and hope: ‘HIV is just a mind game. But if you treat it like any other disease, like TB, then you can challenge it and do like you are now. If you are diagnosed, your first thought is that you will die. But now it is different – we have ARVs. Now behaviours need to change and so do our life styles.’ Vuyo also referred to how illness could infantilize and undermine one’s sense of manhood and dignity: ‘My dreams vanished when I was diagnosed. When I was first diagnosed, I couldn’t wash myself, walk or feed myself. . . . It was as if you are turned around back into being a baby.’ It was this traumatic transition from being a healthy man to being a helpless ‘baby’ that rocked the existential foundations of Phumzile and Vuyo. These profoundly unsettling experiences destabilized their prior sense of self and identity. This extreme vulnerability facilitated the conditions for beginning a process of critical reflection on their pre-HIV life-styles and identities, thereby creating the possibility of imagining new identities and ways of being in the world. The radical changes in individual subjectivity and identity that come from these kinds of life-threatening illness experiences can also, under certain conditions, become a catalyst for a renewed commitment towards family, neighbours and community, in particular in relation to fighting the pandemic (see Robins 2006). Soon after its formation, Khululeka members became involved in numerous community-based activities, including AIDS awareness and sex education campaigns in public spaces such as township shebeens (taverns), railway stations and taxi ranks, on community radio talk shows, and at funerals of people who died of AIDS. Members were also involved in collecting money for families that were unable to pay funeral costs, and visited HIV-positive people in hospitals and their homes. The group’s meeting place was a Rotary Clubfunded shipping container in the backyard of Phumzile’s house in Gugulethu. They also had outings and braais (barbecues) where they socialized and discussed matters of common concern. These rituals of togetherness and solidarity contributed towards the production of sociality under conditions

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of illness that are usually characterized by extreme stigma and social isolation. Many of Khululeka’s members carry the double burden of HIV/AIDS and structural unemployment.23 Many also had children, but because of unemployment they were unable to formalize these relationships through marriage. One of the reasons for the establishment of Khululeka was to address unemployment and thereby enhance the capacity of men to fulfil the social roles of fatherhood. Now that ARVs had given them their lives back, notwithstanding the long-term health uncertainties about living with HIV, they now had to reclaim their social lives, which in many cases had been put on hold as a result of illness. Finding a job was a crucial starting point in this production of ‘new life’. For Khululeka’s members, being permanent volunteer activists was no longer financially viable. Most of the men were between 30 and 40 years old and were keen to establish stable families. Having managed to come to grips with their sero-positive status, and having accepted the reality of life-long commitment to ARV treatment, they turned their attention to new challenges. For many their hope was to find work as treatment literacy practitioners,24 patient advocates and counsellors within the public health sector. Yet, only two Khululeka members, both of whom had been trained as treatment literacy practitioners by TAC and MSF, had full-time employment. The following section explores how Khululeka members frame these concerns and how their illness, together with their social and economic circumstances, creates the conditions for the questioning of taken-for-granted assumptions about manhood and ‘culture’. Illness narratives, treatment testimonies and ‘new’ masculinities During a group discussion with Khululeka members in Gugulethu on 18 February 2006, ‘Thabo’, a 40-something-year-old former ANC liberation fighter described how diagnosis with AIDS could destroy one’s sense of manhood and hope for the future. He recalled that after his diagnosis he had had virtually no support, ‘Even my brothers wouldn’t support me’. ‘Thabo’ explained how illness, AIDS stigma, and the fear of dying were a devastating concoction, especially for African men whose identity was intimately tied to sexuality and reproduction. So while Khululeka members were selfconsciously seeking to fashion ‘new masculinities’ they were constrained by their ambivalence and tacit acceptance of dominant conceptions of what it means to be a ‘real African man’: Especially here in Africa, sexual issues are men’s pride. Here as an African man you are being judged according to how many women you have. I mean especially among young ones, it’s very rare that you find a young man having one girlfriend, for example. Most of the time . . . men marry more than one wife . . . Every man judges his future and well being

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according to the size of his family [laughter from others in the room]. So the doctor says, ‘My friend, I’m very sorry you’re HIV-positive.’ So you just have to stop everything. Imagine that. This makes a vacuum in somebody’s heart [laughter]. All the plans you have are gone. So you find out you are HIV-positive and you say, ‘I am no longer a man, I have to do away with all my girlfriends.’ So this is when the fear and stigma starts. Many people believe that if you’re HIV-positive you only have a period of 3 or 5 years and then you’re gone [laughter]. And you had all these plans. . . Apart from material needs for employment and livelihoods, the need for dignity and respect as a man was a key reason given by members for why Khululeka was established. The need for a ‘safe’ space for men to address specifically male issues was also put forward as the reason for Khululeka’s existence. However, as was mentioned earlier, members also tacitly acknowledged that men, including themselves, remained caught within the discursive webs of dominant masculinities. There seemed to be considerable ambivalence when it came to squaring up to these hegemonic discourses on masculinity. Khululeka members seemed, at times, to endorse dominant models of masculinity, even as they sought to construct new alternatives. The following quotes from participants who attended at a Khululeka workshop at Gordon’s Bay, Cape Town, in December 2006 reveal both critical reflexivity and ambivalence as to what it means to be an ‘African man’. Many of the statements were also ambiguous as to whether they were referring to ‘other men’ or to the participants themselves. Khululeka members appeared to both problematize and subscribe to dominant ideas about African masculinity. They also seemed uncertain as to whether the ‘problem’ was with individual (mis)behaviour or with inappropriate cultural models of masculinity. Men often expect to have sex without a condom because they have ‘paid’ for their wives through lobola [bridewealth]. Some men want to sleep around to feel stronger. I often ask ‘Where are the guys in support groups and treatment literacy meetings?’ I ask women where their partners are. Many say that they have left them. Domestic violence is done by us. . . . We are trying to change. For me, it is very strange to tell my sexual issues to a woman. Men don’t come out openly [about their status]. They are not like women, they are usually scared. This is the purpose of a men’s support group. We talk together about things we can’t discuss with female partners.

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Black men have been oppressed – they lack jobs, housing, shelter, which leads to a higher risk of encountering other social ills such as prostitution. . . . This is not a colour question. It is about poverty and traditions. Some of the excerpts cited above also resonate with Phumzile’s account of his illness and treatment experiences (see Robins 2006). In my early discussions with Phumzile, he had represented himself as a ‘typical African man’ who had many girlfriends. He also spoke about how, as a result of his illness, family, fatherhood, and ‘sexual responsibility’ became central to his life. He also revealed to me in a series of conversations how he had arrived at such ‘ethical clarity’ about what he needed to do to change his lifestyle. In 2001 he became desperately ill with headaches, dizziness, thrush and a range of other opportunistic infections. He lost almost 30 kilograms, his CD4 count was down to 110, and his viral load was 710 000. He could not walk, and he was barely conscious at times. Following treatment at MSF’s ART programme in Khayelitsha he experienced a dramatic recovery. When I met Phumzile in 2004, his viral load was undetectable and his CD4 count was 584. Phumzile viewed HIV as ‘a blessing in disguise’, and he interpreted his recovery as a result of ARV treatment as ‘gift of life’ that he could not afford to squander. This interpretation of his illness and treatment experiences framed his new HIV-positive identity and his commitments to self-discipline and to the family and community: ‘I am like a born-again. ARVs, that’s where my commitment comes from. It’s like committing yourself to life because the drugs are a lifetime thing. ARVs are now my life’ (Robins 2006). This was a striking narrative of the journey from ‘near death’ to ethical self-reflection and action. Concerns about how to be a responsible father also featured prominently in my discussions with Phumzile. He spoke about how, following his diagnosis, he had suicidal thoughts: ‘But then I thought about my children, and what it would be like for them to grow up without a father.’ He claimed that even though he had separated from his first wife, his illness had in fact strengthened his relationship with his children. He wanted to provide them with fatherly direction and support. Having got his life back through ARVs, Phumzile was determined to build a future for himself and his family. He remarried an HIV-positive woman and their infant recently tested sero-negative. In 2007 he was employed and his men’s support group was growing. Looking back on his life, Phumzile spoke about how he had erred by not taking life, and the threat of HIV, more seriously. He claimed that his lifestyle of ‘sexual recklessness’ and ‘womanizing’ had led to his HIV-positive status and illness. Given his illness experiences, he was determined to be a responsible father and to teach his children to value life: I used to take things for granted. I used to ignore things. I used to not to care. I’d say, ‘That won’t happen to me.’ The way I see things now is very

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much different. That if you don’t think of tomorrow, you are nothing. You know, if you don’t think of your future, or the people out there, or your kids. That was my major problem. Now I realize my kids wouldn’t love to live without their father. Even if I am not staying with them, I must give moral support, give them life, and give them direction to life. So, that’s what I’m doing right now. Its time to put my feet on the ground and change the way I see things. . . . At the age of forty you find out that [you] have wasted many years along the way there, doing nothing at all. Not focusing on the right way to succeed. Not having the vision that sometime I could have my own house, my own children, my own car, have a good job, be a father. . . . It’s very hard these days, given unemployment and lack of opportunities [but] you have to have a vision. . . . After Phumzile had returned to good health through ARV treatment he was able to start the long process of remaking his social life, both in terms of his family and personal life-style and in relation to his contribution to his community. New conceptions of masculinity, fatherhood, and responsible sexuality were key aspects of this process of identity formation. These notions of ‘new life’ and ‘positive living’ strongly influenced his decision to establish Khululeka in 2005. It remains to be seen, however, whether these kinds of initiatives are indeed catalysts for creating ‘responsibilized’ masculinities in a time of AIDS.

Concluding reflections Historical studies show that apartheid and racial capitalism profoundly transformed African family structures and conceptions of masculinity (see Hunter 2006). During the past few decades, such changes in sexuality in South Africa have occurred as a result of structural unemployment, greatly reduced marital rates and new forms of domestic and sexual fluidity. These developments have rendered both men and women more socially and economically vulnerable, and also contributed towards the spread of the AIDS pandemic. It is within this context of historical transformation that a handful of men’s support groups such as Khululeka have emerged. These groups are also emerging at a time when African men are increasingly singled out as the source of sexual aggressiveness and HIV infection. While men are generally conspicuously absent from clinics, they are regularly portrayed in media and popular discourses as being irresponsible, violent, dangerous and morally and psychologically flawed. The ‘Zuma Affair’ did not help men’s cause in this regard. Yet, this chapter has argued that men’s support groups such as Khululeka are signalling the possibility of changing this negative image by promoting ideas and practices of male responsibility, and thereby challenging essentialist and racist stereotypes of African sexuality.

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There have been recent calls from public health experts for a ‘new contract’ between health providers and client (Coetzee and Schneider 2004). The advocates of this contract suggest that the passive and paternalistic surveillance model of direct observation therapy (DOT) for the treatment of tuberculosis is not a viable solution for life-long ARV treatment. Instead what is needed, they argue, are highly motivated, ‘responsibilized’ and knowledgeable HIVpositive clients. It is too early to tell to what degree local initiatives such as Khululeka can respond to these calls. What is clear, however, is that these new community-level initiatives can offer men hope and repertoires for responding constructively to HIV/AIDS at a time when male sexuality is routinely pathologized and blamed for the spread of the pandemic. The perpetuation of negative stereotypes about male sexuality is likely to ensure that men continue to evade the public health system, with disastrous consequences for the entire population. It remains to be seen whether initiatives such as Khululeka will provide a more optimistic script than the one that circulated in the public sphere in the wake of the Zuma rape trial. Initiatives such as Khululeka, which are also connected to social movements such as the TAC, reveal how community activism can, under certain conditions, contribute towards the ‘conversion’ of HIV-positive men into ‘responsiblized citizens’ and socially committed activists (see Robins 2006). For these activists the Zuma Affair was a morality tale par excellence. It demonstrated how irresponsible sexual behaviour can precipitate not only the collapse of one’s immune system but also a dramatic ‘fall from grace’. Here too, we have evidence of the rhetorical productivity of binary logics, in this case between the ‘responsible’ and ‘irresponsible’ male. Yet, behind these rhetorical strategies lie the complex and contradictory negotiations and re-constructions of South African masculinities and cultures of sexuality. It is not yet clear whether these experiments do indeed offer alternatives to conservative discourses on male sexuality. Yet the one thing that seems certain is that the AIDS pandemic and the gender and sexual equality provisions in the South African Constitution are contributing towards the twin processes of the politicization of sexuality and the sexualization of politics. This chapter has argued that new forms of ‘responsibilized’ or therapeutic citizenship associated with antiretroviral therapy (ART), including those forged in support groups for men living with AIDS, have created conditions for reflection on alternatives to mainstream, ‘hegemonic’ masculinities. The Khululeka case study has also raised questions concerning to what degree these ‘new’ masculinities are indeed alternatives to dominant masculinities or simply reworkings of prevailing cultures of masculinity. Whereas many men on antiretroviral therapy are certainly becoming aware of the urgent need to change their lifestyles, diets and sexual lives in order to facilitate effective treatment and drug adherence, it is too early to tell whether this will translate into long-term shifts in male subjectivity, sexual citizenship, and cultures of masculinity. What is clear, however, is that HIV is indeed a

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significant factor that is contributing towards raising questions about masculinity in ways that have served as potent catalysts to public debates about gender and sexual rights.

Notes 1. Thanks to Aretha Franklin and Annie Lennox for their powerful renditions of the song ‘Sisters are doing it for themselves’. I would like to thank Chris Colvin, Jean Comaroff, Raymond Suttner, and Lauren Muller for their insightful comments on earlier drafts of this chapter. I also wish to thank Manmeet Bindra, Phumzile Nywagi and members of Khululeka for their generous support and insights. Finally, thanks to Jonathan Zapiro aka ‘Zapiro’ for his superb cartoons. 2. Although I use the term ‘hegemonic masculinities’ in this chapter, I recognize that it is a highly problematic concept that often fails to adequately take into account the historical and cultural particularities and settings within which these discourses and practices take place. 3. In addition, like the United States and other parts of the world, a conservative reaction to this ‘sexual revolution’ is being fuelled by the rise of Evangelical Christianity and the promotion of moralizing discourses on ‘family values’. In South Africa, this backlash has also been fuelled by President Thabo Mbeki’s promotion of gender equality within ANC and government structures. These calls for gender and sexual equality have catalysed a conservative mobilization and re-articulation of deeply embedded discourses on ‘African tradition’ and Christian ‘family values’. 4. For the full judgment see Mail & Guardian website: http://www.mg.co.za/specialreport.aspx?area=zuma_report. 5. For the full judgment see Mail & Guardian website: http://www.mg.co.za/specialreport.aspx?area=zuma_report. 6. Lisa Vetten (2007: 439) writes that ‘on [the] . . . first day of the trial, stones were thrown at a woman wearing a headscarf similar to that of the complainant. Those at court also said they heard the woman described as a slut. Both the insult and the action evoke echoes of the stoning of women for adultery. The following week, a woman arrived with a placard bearing the complainant’s name and the claim that she shamed all South African women. Not only were flyers with a photograph of the complainant, as well as her name and address made available for sale, but her picture was publicly burned, an action which led some journalists to draw parallels with the burning of witches (Vetten 2007: 439, cited in Suttner 2007: 10). 7. Sunday Independent 16 April 2006. 8. Mail & Guardian, 17 March 2006. 9. In his press conference a day after the acquittal Zuma apologized for having made a ‘mistake’ by having ‘unsafe sex’ with an HIV-positive woman. He stated that he would recommit himself to promoting AIDS prevention programmes. Yet, he still sought to justify his shower statement by telling a female journalist, ‘If you’ve been in the kitchen, my dear, peeling onions, you wash your hands, not so? What’s so funny about washing my hands after doing something?’ Mail & Guardian, 12 May 2006: 31. 10. AIDS activists slammed the national leadership for a series of failures including President Mbeki’s controversial denial of the scale of the pandemic, his questioning of the link between HIV and AIDS, and his support for dissident claims that

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11.

12.

13.

14.

15.

16.

17.

antiretroviral drugs (ARVs) were dangerously toxic (see Robins 2004). Similarly, the Minister of Health had infuriated AIDS activists by supporting the dubious AIDS remedies of vitamin manufacturer Dr Matthias Rath and promoting her own ‘African solution’ for AIDS comprising a diet of garlic, onion, the African potato and olive oil. Zuma’s sexual behaviour and court statements were, from the perspective of activists, yet another leadership blunder. This was also evident in President Mbeki’s attack on the anti-rape activist Charlene Smith. In his weekly letter posted on the ANC Today website, the President claimed that Smith’s shocking rape statistics reproduced racist stereotypes of black men as habitual rapists. A similar attack was launched by ANC portfolio committee members against film-maker Cliff Bestall for producing a devastating television documentary on baby rape. Raymond Suttner is currently working on the range of hegemonic masculinities within the ANC during the liberation struggle and post-1994. He has also published on ‘underground masculinities’ where he shows that ‘the militaristic masculinities were qualified by gender conscious people like [Chris] Hani’ (personal correspondence, 14 June 2007). Suttner has also written a fascinating paper on the Zuma rape trial and what he refers to as ‘African National Congress masculinities’ (forthcoming). Spiegel draws attention to the centrality of bonyatsi (extramarital relations) for the identity and ‘worldview’ of Basotho men and women he met in 1973 in Lesotho. He argues that these sexual relations referred to much more than simply sexual intercourse with multiple partners. As he puts it, ‘Many of the Basotho to whom I talked about bonyatsi were of the opinion that it is a feature of all human social life, that it was part of the Creation’ (Spiegel 1995: 151). I would like to thank Raymond Suttner for pointing to the salience of ‘the patronage factor’ in explaining Zuma’s popularity with the Tripartite Alliance. He also points out that President Mbeki’s rule has been characterized by patronage politics (personal correspondence, 14 June 2007). It is important to note here that it is clearly not the case that all rank-and-file members and leadership figures within the ANC and its Alliance partners share Zuma’s ideas about sexuality and masculinity. In fact, there has been strong and widespread criticism of Zuma’s sexual behaviour from within the Alliance and from those who identify with the ANC. It is important to note that Zuma and his supporters did not challenge Mbeki’s centralist managerialist approach until he was dismissed following corruption allegations in 2005 (Raymond Suttner, personal correspondence 14 June 2007). Although recent studies of ART in Khayelitsha, Cape Town, and other ART sites in South Africa reveal high levels of drug adherence (Coetzee et al. 2004), drug and alcohol abuse, especially among unemployed men, has been identified as a barrier to adherence, thereby creating the potential for serious problems of drug resistance. This is particularly worrying in the Western Cape Province, where research has shown that drug and alcohol abuse is rampant (HSRC 1998; MRC 2003, cited in Fuleihan 2006: 59). In addition, it is quite possible that alcohol abuse could be used to justify forms of ‘social triage’, whereby public health workers end up routinely excluding patients they consider ‘irresponsible’ and unlikely to comply with ARV drug regimes. To compound matters, a number of recent studies in South Africa reveal that men access HIV/AIDS services much later than women, largely because clinics are not ‘male-friendly’ and health-seeking behaviour is perceived to be a sign of weakness (Peacock 2005, cited in Fuleihan 2006: 63).

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18. Central to Foucault’s genealogy of ethics was the technique of locating ethical problems, a moment when prior taken for granted forms are rendered ‘problems of thought’. 19. Taped interview with Phumzile Nywagi, Cape Town, 1 September 2005. I first met Phumzile over two years ago at the MSF clinic in Lusikisiki, Eastern Cape Province. At the time he was working for MSF as a research fieldworker. 20. See Zolani Ngwane’s (2005) excellent study of new forms of Xhosa initiation in the Eastern Cape Province. Ngwane shows how young men begin to challenge their elders’ conception of initiation as pain-centred rite of passage. 21. Not his real name. 22. Not his real name. 23. Studies suggest that in the past young men stood a much better chance of gaining access to formal employment that allowed them to pay ilobola (bridewealth) and thereby marry, have children, and establish relatively stable family households. During the past three decades, however, dramatically rising rates of unemployment (currently estimated to be 30–40%) have made this life-cycle trajectory increasingly difficult to achieve. This has in turn undermined the ability of young men to assume the social roles of fatherhood. Mark Hunter (2006: 106) observes that many Zulu-speaking men in KwaZulu-Natal are abandoning pregnant women because of conditions related to poverty and unemployment. Many of these men are extremely frustrated at not being able to conform to accepted social roles of fatherhood, including paying inhlawulo (damages for impregnation), ilobolo (bridewealth), and acting as a ‘provider’. This creates conditions whereby manliness is partially boosted by fathering children, but at the same time those men who are unable to fulfil the social roles associated with fatherhood are branded as unmanly and ‘irresponsible’ (ibid.). 24. Treatment literacy practitioners were trained by the Treatment Action Campaign (TAC) and MSF to provide HIV/AIDS prevention and treatment knowledge to its members and to the broader community.

References Barnett, T. and Whiteside, A. (2006), AIDS in the Twenty-First Century: Disease and Globalization. Second Edition. Basingstoke: Palgrave Macmillan. Barry, A., Osborne, T., and Rose, R. (eds) (1996), Foucault and Practical Reason: Liberalism, Neo-liberalism and Rationalities of Government. London: University College London. Channock, M. (1985), Law, Custom, and Social Order: The Colonial Experience in Malawi and Zambia. Portsmouth, NH: Heinemann. Coetzee, D. and Schneider, H. (2004), ‘Editorial’, South African Medical Journal 93(10): 1–3. Coetzee, D., Boulle, A., Hildebrand, K., Asselman, V., Van Cutsem, G., Goemaere, E. (2004), ‘Promoting adherence to antiretroviral therapy: The experience from a primary care setting in Khayelitsha, South Africa’, AIDS, 18: S27–S31. Connell, R.W. (1993), Masculinities. Cambridge: Polity Press. Cornwall, A. and Lindisfarne, N. (1994), ‘Dislocating Masculinity: Gender, Power and Anthropology’, In A. Cornwall and N. Lindisfarne (eds), Dislocating Masculinity: Comparative Ethnographies. London: Routledge: 11–47.

176 The Politics of AIDS Fassin, E. (2006), ‘The Rise and Fall of Sexual Politics in the Public Sphere: A Transatlantic Contrast’. Public Culture 18(1): 79–110. Foucault, M. (1997), ‘On the Genealogy of Ethics: An Overviews of Work in Progress’, in Ethics, Subjectivity and Truth: Essential Works of Foucault, vol. 1, Paul Rabinow (ed), New York: New Press. Fuleihan, N.C. (2006), ‘The Public Sector HIV/AIDS Treatment Roll-Out Campaign in the Western Cape: A Case Study Highlighting Success Factors and Challenges’. Master of Philosophy in HIV/AIDS and Society, Faculty of Humanities, University of Cape Town. Hamilton, C. (1998), Terrific Majesty: The Powers of Shaka Zulu and the Limits of Historical Invention, Harvard University Press. Hunter, M. (2006), ‘Fathers without amandla: Zulu-speaking men and fatherhood’, In L. Richter, and R. Morrell (eds), Baba: Men and Fatherhood in South Africa. Cape Town: Human Sciences Research Council Press. Mail & Guardian Jacob Zuma Special Report http://www.mg.co.za/specialreport.aspx? area=zuma_report Mamdani, M. (1996), Citizen and Subject: Contemporary Africa and the Legacy of Late Colonialism. Princeton, NJ: Princeton University Press. Morrell, R. (ed.) (2001), Changing Men in South Africa. London: Zed Books. Nguyen, V. K. (2005), ‘Antiretroviral Globalism : Biopolitics and Therapeutic Citizenship’, in A. Ong and S.J. Collier (eds), Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems. Oxford: Blackwell. Ngwane, Z. (2004), ‘ “Real Men Reawaken their Fathers’ Homesteads, the Educated Leave them in Ruins”: The Politics of Domestic Reproduction in Post-Apartheid Rural South Africa’. In B. Weiss (ed.), Producing African Futures: Ritual and Reproduction in a Neoliberal Age. Leiden: Brisbane. Reddy, V. and Potgieter, C. (2006), ‘ “Real men stand up for the truth”: discursive meanings in the Jacob Zuma rape trial’, Southern African Linguistics and Applied Language Studies, 24(4): 511–21. Robins, S. (2004), ‘ “Long Live Zackie, Long Live”: AIDS Activism, Science and Citizenship after Apartheid’. Journal of Southern African Studies 30(3): 651–72. Robins, S. (2006), ‘From Rights to “Ritual”: AIDS activism and treatment testimonies in South Africa’, American Anthropologist 108(2) ( June): 312–23. Robins, S. (2008), ‘Sexual Rights and Cultures: Reflections on the Jacob Zuma Trial’, Journal for Southern African Studies, 34(2). Rose, N. and C. Novas (2005), ‘Biological Citizenship’. In A. Ong and Stephen J. Collier (eds), Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems. Oxford: Blackwell Publishing. Spiegel, M. (1995), ‘Migration, urbanisation and domestic fluidity: Reviewing some South African examples’. African Anthropology II(2): 90–113. Suttner, R. (2008), The Jacob Zuma rape trial: Power and African National Congress (ANC) masculinities. Forthcoming. Vetten, L. (2007), ‘Violence against women in South Africa’, in S. Buhlungu, J. Daniel, R. Southall, and J. Lutchman (eds), State of the Nation. South Africa 2007. Cape Town: HSRC Press, 425–47.

11 Gender, Sexuality and Global Linkages in the History of South African AIDS Activism, 1982–94 Mandisa Mbali

Introduction The Treatment Action Campaign (TAC) is South Africa’s most prominent and powerful new social movement and it is estimated to have 9500 members. TAC’s demands remain unmet as the South African government is only providing treatment to just over one-third of the people who need to access it.1 Nevertheless, unlike many other social movements it has successfully had one of its key demands met: for government to develop and adopt an antiretroviral (ARV) roll-out plan and begin to provide HIV treatment. Therefore, it comes as little surprise that there has been a growing literature on TAC (Friedman and Mottiar 2006; Heywood 2004). By contrast, AIDS activism in an earlier period in South Africa and its legacy for contemporary AIDS activism as evident in TAC has received less attention. AIDS is a sexually transmitted epidemic and numerous studies have demonstrated how the changing dynamics of gender and sexuality have shaped the epidemic (Horowitz 2002; Marks 2002; Hunter 2002; Delius and Glaser 2002). Fewer have focused on how the politics of gender and sexuality have moulded AIDS activism itself. This chapter aims to draw out how activism based on gender and sexuality has been constitutive of AIDS activism over time (see also Chapters 9–10). In particular, it traces and compares feminist and gay rights activists’ early political responses to AIDS and draws out some of the legacies of this earlier work for contemporary AIDS activism. It does this in four ways. First, it compares how their conceptualization of risk impacted on their response. It argues that gay activists had a fairly clear sense of being at risk of HIV infection in a relatively early period. By contrast, feminists disagreed on which groups of women were at risk of contracting HIV and what placed women at risk. The view that AIDS primarily affected prostitutes and that prostitution resulted from ‘family breakdown’ due to the apartheid system was also expressed by some feminists. In addition, many women perceived of AIDS as primarily affecting gay men. The earliest articles dealing with AIDS in feminist publications were often primarily educational, 177

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implying that all people had a high degree of autonomy and rationality in their sex lives. Despite the fact that feminists were working on both violence against women and AIDS they only began to discuss the link between violence against women and AIDS in any depth later in the period. This partly related to difficulties confronting sexual coercion within ‘struggle’ circles and a reluctance by many middle-class activists to be associated with prostitution and ‘homosexuality’. By contrast, gay activists seldom debated whether AIDS was an issue for their community and a few were open about living with HIV from a far earlier period. Furthermore, gay activists who were open about their HIV status framed their demands in terms of human rights-based discourse. Secondly, it looks at how the wider racial fracturing of these movements inhibited unified responses to AIDS. In the 1980s, the gay movement splintered over racism within the main gay organization the Gay Association of South Africa (GASA), which related to its refusal to support Simon Nkoli following his jailing for anti-apartheid activity. The racial divisions within the women’s movement were similarly brought to the fore over the 1991 Women and Gender Conference at the University of Natal. Thirdly, it will draw out how AIDS activists from both movements were influenced by their different global linkages. Gay AIDS activists generally looked North to their colleagues in America and Europe with whom they met at international gay meetings and international AIDS conferences and from whom they received funding, strategic ideas and support. By contrast, feminists were often initially alerted to the fact that AIDS might become a major problem for South African women by women from other African countries whom they met at conferences. Fourthly, this chapter draws out some of the legacies of earlier feminist and gay rights AIDS activism for contemporary AIDS activism. First, it argues that the early openness and visible leadership of gay men on the issue and an early acceptance that they were at risk partially explains the prominence of gay activists within TAC. By contrast, feminist women activists still experience difficulties in establishing an independent voice in AIDS activism. Some of these difficulties appear to be inherent in bringing together and organizing women from different races and sexual orientations around a feminist agenda in South Africa. One central difficulty in organizing women as women has been (and remains) how to balance conflicting demands for autonomy from and engagement with larger mixed-gender political parties and civil society organizations. The recent trial and acquittal of Jacob Zuma raises ongoing issues around sexual coercion within ‘struggle’ circles (see also Chapters 9–10). It also shows that there are ongoing difficulties faced by feminists in addressing the link between gender-based violence and AIDS (see also Chapter 9). Yet, the trial has witnessed a resurgence of feminist activism, as evidenced in the One-in-Nine campaign in support of the complainant in the case.

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Different conceptualization of risk and the different responses this catalysed For much of the 1980s AIDS was seen by South African epidemiologists as primarily affecting gay men. By 1989, of the 98 cases voluntarily reported to the government’s main AIDS policy-making body, the AIDS Advisory Group, 81 per cent were reported to have fallen into the ‘homosexual/bisexual category’ (Sher 1989: 314–8). In the mid-1980s it was estimated that 10–15 per cent of gay men in Johannesburg were infected with HIV (Sher 1989). The male/female ratio was 24:1 and only seven black patients had ‘heterosexually acquired African AIDS’ (Schoub et al. 1988: 153). In the 1980s, this was mirrored by shocking headlines announcing the arrival of the ‘gay plague’ or homosexual disease in South Africa.2 Epidemiologists held that a ‘heterosexual’ epidemic following an ‘African pattern’ was most likely to be the area of greatest future growth. They placed prostitution at the centre of their explanations for the spread of HIV: Once established in the heterosexual population the epidemic will be sustained, as in other parts of Africa and indeed as with all epidemics of STDs, by a promiscuous core consisting largely of female prostitutes. (Schoub et al. 1988: 156) Prostitutes were a threat to the ‘intermediate population’ and they called for serious consideration to be given to ‘efforts to shrink the promiscuous core of prostitution, irrespective of the guise under which it is practiced’ (Schoub et al. 1988: 156) Most epidemiological studies from the early 1990s posited a ‘two stage’ theory of the South African AIDS epidemic. Broadly-speaking this theory was that there was an epidemic among white ‘homosexuals’ which levelled off in the late 1980s and gave way to an African ‘heterosexual’ epidemic. While it is true that there were rising HIV infections among Africans from the late 1980s, there are reasons why social scientists may wish to view this theory with caution. In particular, in the wake of social constructionist theories of scientific knowledge it is worth problematizing the sexual orientation and racial categories at work in this explanation of the epidemiology of AIDS. First, social constructionists would argue that sexuality is not objectively fixed into three mutually exclusive categories of ‘homosexual’, ‘bisexual’ and ‘heterosexual’ and that these distinct categories of people were invented in the modern sense in the nineteenth century (Foucault 1976). By contrast, those holding essentialist views of sexual orientation would argue that ‘there are objective, intrinsic, culture-independent facts about what a person’s sexual orientation is’ (Stein 1990).3

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In a South African context, the dominant homophobic construction of ‘homosexuality’ is that it is an ‘unAfrican’, ‘white-import’. Historian Marc Epprecht has thoroughly refuted this prejudiced idea, and shown that in fact homophobia is an unAfrican, western import (2004). In an African context, epidemiology cannot be seen as objective and untainted by the social and cultural prejudices of the researchers conducting it, including the possibility that their research may have been influenced by the mistaken, but widespread idea of homosexuality as an exclusively white phenomenon in South Africa. In relation to the early history of AIDS in Zaire, Brooke Grundfest Schoepf has critiqued how some AIDS researchers used ‘rapid assessments’ and ‘cobbled together assessments’ to blame AIDS on a monolithic and unchanging ‘African sexuality’ (2004). This placed the blame for AIDS at an individual and cultural level, divorced from any sense of how social and economic relations also affected African sexuality over time. As Simon Nkoli’s infection with the virus shows, there clearly were cases of same-sex transmission of HIV to black males by the early 1990s. In any event, more research is clearly required to test to what extent epidemiologists’ biases about race and sexual orientation may have led the phenomenon of samesex male sexual transmission between races or among black people being overlooked in the period. Nevertheless, despite possible racial biases in their reading of ‘gayness’, epidemiologists’ framing of AIDS as a ‘gay’ epidemic had important implications for how gay and feminist activists dealt with the issue of AIDS prior to 1994. In line with international trends, gay men bore the brunt of early AIDS-related discrimination in South Africa. For instance, in Natal in 1986 posters were put up asking those who were gay or ‘moffies’ (a derogatory term for gay men) not to give blood.4 From 1985, GASA, the main nationwide gay organization, published basic information about HIV transmission in its newsletter and arranged talks and seminars on AIDS. This shows that the issue was clearly seen as an important gay issue by gay organizations in the country at the time. For instance, speaking at the GASA Natal Coastal branch’s 1984/5 AGM, the branch chairman argued that AIDS would mean a massive homophobic back-lash which had to be addressed: Individually, some of us will be brought close to the reality of long term suffering and death, and collectively we will all be faced with caring for and dealing with people who are lonely and perhaps deserted by those closest to them. This is the kind of true gay spirit which I see developing out of the AIDS crisis.5 As will be discussed in the next section of this chapter, gay rights activism splintered around this period due to racism and conservatism within the gay rights movement and differences over how to deal with apartheid. Nevertheless, despite the fracturing of the gay movement in the mid-1980s, this

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early recognition that AIDS was a key issue for the gay community partially explains why later in the period HIV-positive gay AIDS activists would be the first social grouping to be prominently open about their HIV status to push for a human rights-based approach to AIDS. In particular, Peter Busse revealed his positive HIV status in 1990 and Shaun Mellors did so at the NACOSA conference in 1992. By contrast, feminists disagreed on which groups of women were at risk of infection and what placed women at risk. The idea that AIDS primarily affected prostitutes was the dominant epidemiological representation of the issue and it also had purchase among feminists, in broader ‘struggle’ circles, and among the wider public. Before moving on to addressing the earliest feminist responses to the AIDS epidemic, it may be worth briefly analysing the general characteristics of the women’s movement in the period. As Shireen Hassim has shown, as in the present, the women’s movement over the period was made of up several heterogeneous organizations (Hassim 2006a). Prior to 1990, it can be roughly divided into those who were based within the country and those who were in exile. Those based internally generally belonged to United Democratic Front (UDF) affiliated organizations like the Natal Organization of Women (NOW), the Federation of Transvaal Women (FEDTRAW) and the United Women’s Organization (UWO). There were also academic and popular feminist publications inside the country which profiled the activities of women in trade unions and UDF affiliated women’s organizations. SPEAK magazine was founded in 1982 as an accessible newsletter published in English and isiZulu which profiled the activities of community-based women’s organizations in Durban. It later became national in distribution and in terms of the issues it covered.6 Agenda journal founded in 1986 aimed to provide a space to bring together feminist academics and activists to publish theoretical discussions about women and gender. The majority of those in exile were largely linked to the African National Congress’s (ANC) Women’s Section which later became the ANC Women’s League. Over the period a key dilemma was to what extent it should remain autonomous of the larger mixed-gender anti-apartheid organizations with which it was affiliated, and to what extent it should be integrated within those organizations (Hassim 2006a). In general, while many women activists articulated positions on socioeconomic and political issues which were in fact promoting women’s rights, a parallel debate also raged over whether feminism itself was a legitimate ideology. It was widely stigmatized in anti-apartheid circles as a ‘separatist’ strategy promoted by white feminists (some of whom were lesbians) linked to rape crisis organizations, at white universities. This had the consequence that many anti-apartheid women who were actually articulating and organizing around feminist positions would not have referred to themselves as feminists for strategic reasons.7 For instance, feminist thought influenced exiled women

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in the ANC when they interacted with western feminists. Similarly, those based in East and Southern Africa saw that obtaining ‘liberation’ through nationalism did not necessarily ensure liberation for women. This all stimulated thinking that women and men within the movement did not have identical concerns and that there was value in building more autonomous structures (Hassim 2006a). Some women activists articulating feminist positions may not have referred to themselves as feminists as such in the period; this paper will nevertheless use the term ‘feminist’ to refer to activists who advocated for positions based on principles of gender equality and women’s rights over the period. In the transition period following Mandela’s release from jail, the unbanning of the ANC and the beginning of the political negotiations for a transition to democracy from 1990–94, most of the UDF affiliated women’s organizations collapsed as semi-autonomous organizations and merged with the ANC Women’s League. Yet, in this period the women’s movement was perhaps at its strongest point in South African history, and, as a consequence, it was instrumental in the inclusion of women in negotiating teams and of the gender equality clause in the constitution. Hassim offers three reasons for the success of the women’s movement in this four-year period (Hassim 2006a). First, the negotiations offered new possibilities for the women’s movement to make its claims at a national level. Secondly, the creation of the Women’s National Coalition (WNC), an autonomous, multi-party national representative structure of women activists, allowed women to make claims independently of the ANC. Thirdly, the WNC was driven by women in the ANC and so it could also use the converse strategy of engagement with the ANC to command its support at crucial junctures in the negotiations. It is paradoxical that the women’s movement did not muster a more rigorous response to AIDS by the early 1990s, a period in which it was probably at its most organized and influential to date and when there was clear evidence of growing HIV infections from annual antenatal surveys. Feminist publications were generally quite vocal on AIDS as were a few feminists who were affiliated to the progressive health movement.8 However, this did not translate into a coherent strategic response to AIDS across the women’s movement which is evident in the fact that the WNC’s ‘Women’s Charter for Effective Equality’ produced in February 1994 included only one minor mention of AIDS.9 This chapter will now turn to the earliest recorded utterances by feminist activists on AIDS. The idea that the family was ‘under attack’ due to migrancy was often repeated in feminist circles. For instance, at the 1990 Maputo Conference, Liz Floyd argued that:

It is natural for men in migrant labor to look for relationships that provide some of the comforts of home, and some women accept compromises,

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with their partners having a wife at home and a girlfriend at work. Many men remain faithful to their wives despite the conditions.10 Floyd went on to argue that women impoverished by migrancy became prostitutes and were involved in financially dependent relationships with multiple boyfriends.11 At the same conference, Manto Tsbalalala-Msimang also argued that prostitution was the main reason for the spread of AIDS.12 Similarly, Anna Strebel argued that in South Africa migrant labour has ‘forced on women and men sexual practices which can only increase the risks of HIV infection’ (1992: 50). In ‘struggle’ circles the idea that apartheid had ‘destroyed’ the family and created prostitution, which spread AIDS was also often repeated. For instance at the Maputo conference Antony Zwi also called for ‘The role of the migrant labor system in promoting the spread of HIV infection to be recognized’, especially in terms of how it prevented workers and families from living together.13 It appears that the idea that AIDS primarily affected prostitutes was also a common view among South African women more generally. For instance, in an article in SPEAK magazine Montsho Matlana recounted: I know women who get angry about the use of condoms. They say: ‘Do you think I’m a prostitute infected with STDs (sexually transmitted diseases). Never use that rubber in my body’. (1993: 33) An article in SPEAK magazine on women living with HIV published in early 1994, featured an interview with an HIV-positive, female sex worker, Themba Zintle. Demonstrating the extent to which she felt stigmatized for her involvement in sex work she mentioned both how she got into sex work and emphasized that AIDS also affected ‘normal’ women. She said: Life was very difficult for me. I had no money. I decided to sell my body so I could survive. . . . Many people think HIV is only a disease ‘loose’ women get. Yet the majority of women with HIV are not prostitutes.14 As other feminists pointed out at the time, this mechanistic view of prostitution as an effect of industrialization in South Africa is problematic in that it existed in different forms in pre-industrial society. For instance, Rachel Holmes argued that: Industrialization did not ‘invent’ prostitution; rather it modified and altered its forms, intensifying its practice in line with the intensification of population in urbanized environments, which is a key facet of industrialization. (1994: 44)

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Moreover, as Belinda Bozzoli has argued, there are many aspects of female oppression in South Africa which cannot be explained away merely as effects of capitalism (1983: 142). Similarly, this idea of prostitution as stemming from the ‘collapse’ of the family was powerfully critiqued by Luise White in the period, in her history of prostitution in colonial Nairobi (1990). White critiqued the idea of prostitutes as degraded victims from broken homes, by pointing out that prostitutes often used their wages to support family members: in terms of this, she saw prostitutes as victims of poor, but ‘strong families’ working to keep them together (1990: 9). The representation of AIDS as primarily a problem for prostitutes also conveniently deflected the problem from ‘normal’ heterosexual women, such as anti-apartheid activists in the women’s movement.15 It is worth noting that it was extremely difficult for feminists to address the ‘bed politics’ of their male comrades in the period. For instance, at the 1989 COSATU national conference controversial resolutions were proposed by the Transport and General Workers’ Union (TGWU) dealing with sexual harassment within COSATU and ‘bed politics’ in particular: They said that often male comrades used their ‘political experience and organizational seniority’ to embark on casual affairs with new women membership. These were ‘unequal’ relationships and when they collapsed the women often left the organization. (Bonin 1989: 19) In response, male delegates accused women comrades of encouraging sexual attention (Bonin 1989). The issue became buried after it was referred to the Central Executive Committee for discussion and was not raised again at the 1991 COSATU conference.16 Many women also believed in the ‘gay plague’ stereotype of AIDS, and as a consequence exposed themselves to HIV infection. For instance, one woman living with HIV who was anonymously interviewed by SPEAK magazine in 1993 did not believe she was at risk of HIV infection because when she first heard about AIDS in the 1980s she heard that it only affected gay men in San Fransisco.17 Many HIV-negative women thought that the few women who became infected were prostitutes, not ‘normal’ women like themselves. For instance, prior to her diagnosis with HIV, AIDS activist Promise Mthembu believed that it was primarily white and coloured prostitutes who were at risk: At the time, the way it was presented to me it wasn’t a black man’s disease at all. . . . They were saying it affected sex workers and I believed that not many sex workers were black because you would see white women in magazines or coloured women, pretty women so it was not you, you know.18 The ‘unreality’ of AIDS in the period, partly caused by the long asymptomatic period, made AIDS awareness activities a focus of early feminist

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responses to AIDS.19 AIDS was first conceived of as primarily a problem requiring greater access to information (women needed to be informed of the risk and methods of prevention) implying an autonomous, rational-actor model of sexual behaviour. Yet, towards the end of the period there was also a greater recognition in feminist circles of the role played by coercion and violence in the spread of AIDS: a recognition that with full knowledge of all the facts in the world many women might still not be in a position to demand safer sex. Yet, HIV prevention as information transfer remained the dominant model throughout the period. Unsurprisingly this model was also dominant in feminist circles as evinced in SPEAK magazine’s first article on AIDS in 1988. Importantly it asserted that ‘We need to discuss AIDS in our unions and community organizations. We need to speak to our children about AIDS. We need to practice safe sex with condoms’.20 Violence against women was a central concern for the women’s movement in its own right, throughout the period. SPEAK magazine covered numerous incidents where community-based women’s groups mobilized against rape and sexual harassment. For instance, it highlighted how in 1986 women at Turfloop University organized against ‘continual rapes and harassment’ by male students and demonstrated outside a male hostel after an attempted rape.21 The next year it also ran a special issue on sexual harassment highlighting that women were offered jobs in exchange for sex and passes were made at women at union rallies asking ‘Why do we have to defend ourselves from men we work with who are our comrades at meetings and rallies?’22 Unsurprisingly, in 1994 violence against women featured strongly in the WNC’s Women’s Charter for Effective Equality.23 However, it took time for feminists to fully establish the links between women’s subordinate social-economic and cultural status – most forcefully expressed in violence against women – and HIV transmission. This may have related to the fact that internationally, for most of the 1980s, epidemiological research on women and AIDS was thin in comparison to the large and growing body of research focusing on gay men in the AIDS epidemic (Susser 2002: 46). Writing in 1992 on priorities for local research, Shireen Hassim argued that while one study showed women’s greater vulnerability to HIV infection there was a dearth of research on ‘factors which prevent women from making choices about sexual practices’.24 A local body of literature on gendered social factors placing women at greater risk of HIV infection would develop later in the decade, but it seems as if this research did not easily translate into effective feminist activism addressing the link between sexism and AIDS.25 In 1991, a later edition of SPEAK had an article that mentioned discussions at a Township AIDS Project (TAP) meeting on how women could organize around AIDS. At the meeting women ‘said it is men who control women’s sex lives. It is seen as a man’s right to have sex whenever he wants to, and with whoever he wants to’.26 There was also a growing recognition towards the end of the period under discussion that female requests to use

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condoms would often result in males using physical violence or ending relationships.27 Yet it is important not to overstate this shift: while there was a growing understanding of the relationships between gendered factors such as violence against women and HIV transmission, the dominant reading of HIV transmission in the women’s movement was that it was a consequence of poor levels of access to information. As discussed above, the WNC was perhaps the strongest, relatively autonomous manifestation of the women’s movement in South African history, including as it did a broad front of women’s organizations and the women’s sections of several political parties (Hassim 2006b).28 Yet even it failed to fully articulate the links between violence against women and sexual coercion and AIDS. Indeed, the 1994 Women’s National Charter only mentioned AIDS once under the health article (11) which called for women to have access to ‘information pertaining to reproductive health services’.29

The impact of the fragmentation of both movements on their responses to AIDS Several theorists of gender and sexuality have demonstrated the basic instability at the heart of the categories ‘homosexual’/‘heterosexual’ and woman/man. For instance, Judith Butler has disputed the idea that sex is a pristine natural surface onto which gender is culturally projected (1993). In terms of this, she has argued that: ‘The subject position’ of women . . . is never fixed by the signifier ‘women’; that term does not describe a pre-existing constituency, but is rather part of the very production and formulation of that constituency, one that is perpetually renegotiated and articulated in relation to other signifiers in the political field’. (Butler 1993: 195)30 Similarly, Michel Foucault showed how the modern category of ‘the homosexual’ was produced as a category by medicalization and other forms of modern power-knowledge (Foucault 1976; Altman 1993). The motivation for this type of policing was to make sexuality economically useful (to reproduce labour) and politically conservative (to maintain the political status quo) (Foucault, 1976). This brings into question any essentialized rigid construction of the accepted categories of ‘gay’ and ‘straight’. Foucault wasn’t the first theorist to question how ‘natural’ and rigid these categories were. Alfred Kinsey found that 50 per cent of white males where not exclusively heterosexual throughout their lives. This led him to argue that we should re-examine ‘homosexual’, ‘bisexual’ and ‘heterosexual’ as categories and perhaps conceive of sexual

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orientation as being more of a sliding scale of desire between the poles of same and opposite sex.31 Any political mobilization based on these categories is bound to be complex, but in the context of the late apartheid and transition era South Africa, there was also the added dilemma of how to address the racist policies of the day. Indeed, the gay rights and the women’s movements were seriously divided due to racial tensions. First, merely participating in an organization of gay people or women was no indication of being feminist or in favour of human rights for all gay and lesbian people or even for people of all races. Similarly, women’s organizations were not always initially founded with the aim of promoting women’s rights. In some cases, male activists urged for women to ‘organize’ other women to strengthen the overall ‘struggle’ for national liberation. For instance, a founder member of the Durban Women’s Movement, which became the UDF affiliated Natal Organization of Women (NOW) argued that ‘the men decided that women needed to be mobilized as part of the struggle and that’s what set off the impetus’.32 Moreover, many women’s organizations and activists would not necessarily have described themselves as feminists. As discussed above, of all the organizations in the women’s movement, rape crisis was seen as being more characteristically self-defined as feminist.33 Cherryl Walker has raised some of these issues in relation to the women’s movement in an earlier period. In particular, in relation to the Federation of South African Women (FSAW) in the 1950s she has shown that while the movement had some goals which were women’s rights-related, many members may not have described themselves as ‘feminists’ (1991: xiv). Indeed, many members of FSAW in the 1950s may have put their blackness before their femaleness in determining their political practice although its pass campaigns drew on both aspects on their identities (Walker 1991: xiv). Belinda Bozzoli has argued that there were ‘many patriarchies’ in modern South Africa (1983:155). At a very basic level, the history of domestic labour in South Africa shows that the liberation of white women from the ‘double shift’ of housework tied their black female domestic labourers into semi-feudal relationships (Bozzoli 1983: 160). At a 1991 conference tensions exploded over black and white women’s different experiences of patriarchy and issues over whether privileged white female academics could represent black women’s experiences. The ‘Women and Gender in Southern Africa’ conference was held from 30 January to 2 February at the University of Natal in Durban and was organized by the Gender Research Group. At this conference ‘Some black women expressed their anger at being the subjects of academic research with little control over the nature or products of research’.34 In particular, questions were asked by black women over the extent to which white women could understand the nature of black women’s oppression. In turn, white women at the conference felt betrayed.35 The conference also brought to

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the fore divisions between feminist activists (generally black) and academics (generally white). Black women present stated that: We deplore the marginalizing of black women at this conference. We feel that there are black women working at the grassroots level, in political organizations and in universities who could have presented papers here. We cannot condone the way entrenched apartheid relationships have been reproduced at this conference. . . .36 The conference also brought to the fore tensions between feminism and gay rights activism by lesbians. As Altman has argued in relation to the international context, in South Africa lesbians faced a ‘dual oppression’ within both the women’s movement where they faced homophobia and the gay rights movement where they faced sexism (1993: 216). Lesbian delegates at the 1991 Durban conference felt that it was not a ‘safe space’ for them as there were no papers on lesbianism and heterosexism. They argued for sexuality to be addressed as it ‘relate[d] to gender and to discrimination against women’ and went on to charge that: Lesbianism offers a fundamental challenge – political challenge – to gender relations, and is therefore vital in a conference on women and gender. The omission of lesbianism, and a questioning and problematising of sexuality, further serves to perpetuate our oppression as women.37 The absence of an alliance between the women’s movement and the gay rights movement lesbians at the conference is indicated by the fact that lesbian participants called for academics to become aware of the lobbying of the Organization of Lesbian and Gay Activists’s (OLGA) for the ANC to push for the inclusion of a clause guaranteeing non-discrimination on the grounds of sexual orientation in the country’s new constitution.38 Lesbians’ double oppression was also manifest in sexism lesbians faced within gay rights activism. Discussing the early days of transition-era, multi-racial, progressive gay activism, Bev Ditsie has argued that I don’t think the men in GLOW saw lesbians as women. . . . If they had seen us as women then they would have had to deal with their own sexism. Men are men, including most gay men.39 Bev Ditsie famously argued for women’s rights, as enshrined in international law and gender machinery, to include non-discrimination and equal rights for lesbians at the 1995 United Nations Beijing Conference on Women. The marginalization of lesbians within gay AIDS activism and the ‘AIDS world’ more generally was addressed in a 1992 article in Agenda. The article highlighted that due to limited research the real HIV transmission risk for

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lesbians was ignored by AIDS workers in all fields including government and NGOs. The small research project discussed, therefore, showed lack of knowledge about dental dams among lesbians and how to use or obtain them (Tallis 1992). These issues affected the early HIV prevention work of lesbian activist Bev Ditsie who worked with the Township AIDS Project (TAP) and the Gay and Lesbian Organization of the Witwatersrand (GLOW). A lack of research on transmission between lesbians presented difficulties in trying to educate women about HIV prevention, as Ditsie said in an interview with the author: I was trying to work out where do we/I fit in. Without research you speculate and you try to work out risk you take heed of blood, open sores and you work it out that way. . . . So I would run safer sex workshops for girls and women emphasizing that sado-masochism could lead to infections.40 To return to a discussion of the women’s movement’s shortcomings, it is worth noting that women’s rights were generally seen as a ‘secondary’ or ‘subordinate’ struggles in the period. By the early 1990s, the ANC Women’s League was probably the most influential section of the women’s movement. Yet it enjoyed questionable independence from the ANC and had the problem of dual accountability to both its female constituency and its ‘parent’ organization (Walker 1991: xvi–xviii). The enormous legitimacy of the national struggle meant that ‘At this stage an autonomous, mass-based women’s movement with an explicitly feminist agenda . . . [appeared] . . . to be outside the realm of feasible politics’ (Walker 1991: xviii). This statement may seem suspect given that the Women’s National Coalition (formed in 1991) doubtless enjoyed a degree of autonomy and success in increasing the number of women in the first democratic parliament and in achieving Constitutional reform promoting gender equality. However, here Walker did point towards lasting dilemmas around autonomy: in an effort to preserve the WNC’s autonomy women representing political parties were not allowed to hold offices in the coalition. This robbed the WNC of important leaders who had moved into government and prevented the WNC from becoming a powerful alliance of women in government and civil society post-1994 (Hassim 2006: 165). Even if there had not been confusion and debates within feminist circles around which groups of women were at risk and what placed women at risk, the inherent divisions caused by racial and sexual orientation differences between participants within the women’s movement would have blunted a coherent response to AIDS. In addition to which, it appears that women had extreme difficulties in successfully challenging the sexism of male antiapartheid comrades demonstrated by the ‘bed politics’ incident at the 1988 COSATU conference discussed above. Racial divisions were not unique to the women’s movement. GASA was dominated by white middle class men and has been characterized by Mark

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Gevisser as having been ‘apolitical’ and ‘non-militant’ and was mainly focused on providing social support (Gevisser 1994: 50–1). While their colleagues in Gay Men’s Health Crisis and AIDS Coalition to Unleash Power (ACT UP) in the United States were engaging in civil disobedience for more treatment research and more action from the Reagan Administration, in 1985, GASA was content with recognition by the minister of health as the ‘official mouthpiece of the gay community’, even while it was not represented on the AIDS Advisory Group, the government’s main AIDS policy-making body.41 Issues of racism and ‘apoliticism’ on apartheid came to a head with the jailing of prominent anti-apartheid gay activist Simon Nkoli on trumped up charges with several other United Democratic Front (UDF) detainees. While Nkoli became a cause c´ elèbre for anti-apartheid, gay rights activists around the world, GASA refused to condemn apartheid or support Nkoli, leading to its expulsion from the International Lesbian and Gay Association (ILGA) (Gevisser 1994). While GASA splintered, several new anti-apartheid, gay organizations were formed such as the Gay and Lesbian Organization of the Witwatersrand (GLOW) and the Organization of Lesbian and Gay Associations (OGLA). Speaking of the history behind the formation of GLOW in 1992, its president Cecil Nyati said that: GLOW was formed in 1989 because other gay and lesbian organizations did not really have a place for blacks. They were dominated by white, middle-class men. Many of us did not feel comfortable in these organizations. (Nyati quoted in Panda 1992: 11) Regional organizations such as GASA 6010 provided AIDS prevention and care services that were noted by gay intellectuals and activists at the time (Gevisser 1994). However, the serious divisions within the gay movement doubtless inhibited a more coordinated national response to AIDS as is clearly the case within the women’s movement. This history is of particular relevance to contemporary AIDS activism. This is the case as TAC was founded by its chairperson, Zackie Achmat, the former chairperson of the National Coalition for Gay and Lesbian Equality (NGCLE). Additionally, it was initially affiliated with the National Association of People Living with HIV/AIDS (NAPWA), which was founded by gay activist Peter Busse. While gay men are well represented in the leadership tier of AIDS activist organizations, women have only very recently come to assume visible public leadership positions in such organizations. In addition to which, a qualitative, co-authored participatory study conducted by the author and a colleague in 2004 found that women AIDS activists from a range of mixedgender organizations in KwaZulu-Natal reported having experienced sexism within their organizations (Mbali and Connor 2007). The sexism reported included: resistance within AIDS activist organizations and movements to

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discussions of sexism and feminist or even gendered discourse; a valorization of certain male activists, who generally occupied public, vocal ‘spokesperson’ roles; general difficulties in building solidarity between women within organizations and working cultures that did not politically empower women. In her chapter in this volume, Leclerc-Madlala describes nascent efforts to do autonomous feminist AIDS organizing in response to internal organizational sexism and sexism in wider society in the wake of the Zuma trial. Research on feminist responses to the epidemic in an earlier period and more recently indicates that for this activism to be effective, it must overcome both sexism in mixed gender organizations and wider society and divisions caused by socio-economic and cultural differences between women such as racial differences and women’s diverse sexual orientations.

The political influence of pre-existing global activist linkages on contemporary movements and networks Global linkages were vital in terms of providing sources of information, solidarity and financial support for both gay and feminist activism focused on AIDS. More research needs to be done in this area, however, preliminary research suggests that whereas, on the whole, gay AIDS activism received financial support and strategic ideas from the North, feminists tended to become alerted to the problem AIDS would become for South African women from interacting with their African peers at conferences and in exile. One key way that Northern movements shaped gay AIDS activism is through providing funding. For instance, the Swedish lesbian and gay movement pledged to finance the Township AIDS Project (TAP) founded by the Rand Gay Organization (RGO) and supported by the Gay and Lesbian Organization of the Witwatersrand (GLOW).42 Similarly, Norwegian funding was also associated with the founding of TAP.43 The American AIDS organization AIDS Coalition to Unleash Power (ACT UP) also appears to have briefly had a branch in South Africa. However, its South African branch was more militant than most South African AIDS NGOs in the period. Indeed, its focus on encouraging accountability among ‘defunct, money guzzling organizations’ in the AIDS sector was seen by most AIDS activists as possibly ‘angering people without results’.44 This kind of militant AIDS activism would only be in evidence in the Treatment Action Campaign later in the decade.45 By contrast, the women’s movement had much stronger links with African AIDS NGOs and women’s organizations. SPEAK magazine ran an article in 1992 profiling the story of Noering Kaleeba including her role in founding TASO and being open about living with HIV.46 Similarly, the next year it ran an interview with Elizabeth Ngugi, a Kenyan doctor and AIDS worker who urged South Africans to learn from Kenya and hold their government to account on carrying out plans and turning them into action.47 Similarly,

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Agenda’s first article mentioning AIDS was a report on Debbie Bonin’s visit to Kampala, Uganda. It pointed out that 50 per cent of Africans living with HIV were women and mentioned a speech given by openly HIV-positive Ugandan musician Philly Lutaya (Bonin 1990: 33–4). These links have only been drawn in a very preliminary way by the research discussed in this chapter and it is an area that clearly requires further research.

Concluding remarks: legacies for the present To shift to the present, issues around the gender and sexuality politics linked to HIV have been brought to the forefront of South African politics and public debate following the trial and acquittal of Jacob Zuma on the charge of rape. It is not within the scope of this chapter to recount all the political and social implications of the trial, which are dealt with more fully in the chapters by Suzanne Leclerc-Madlala and Steven Robins; however, there are several disturbing aspects of the trial and its aftermath which are traceable in the history recounted in the chapter. First, the issue of sexual coercion by more senior male activists of more junior female members in struggle circles was an issue feminist activists tried to raise in an earlier period, as shown by the debate over ‘bed politics’ at the 1989 COSATU conference. In relation to this, the idea that women ‘invite’ sexual harassment and coercion also existed in struggle circles in the 1980s. Secondly, the state of the women’s movement in South Africa today and issues around the independence of the ANC Women’s League were at issue in the early 1990s and have also been raised by the ANC Women’s League’s climb-down on the Zuma affair.48 Thirdly, although there is a much greater consensus in feminist circles today over the link between violence against women and women’s gendered vulnerability to HIV infection, there appears to be extreme ongoing difficulties confronting violence against women and getting men to confront their risk of HIV infection and to change their behaviour. As Suzanne Leclerc-Madlala shows in Chapter 9, there is a desperate need for a resurgence of a strong and independent women’s movement and there are some encouraging early signs that the Zuma rape trial may have acted as a catalyst for this to happen. Yet the complexities of this endeavour are suggested by the inherent instability of the category ‘women’ and what it means in South Africa, a racially divided society in both the past (as this chapter argued) and the present. In addition, women activists in gendermixed organizations in the past and in the present have had to overcome both sexism within such organizations and wider society and differences in race, class and sexual orientation between themselves to organize autonomously as women. Furthermore, despite the fact that some South African women of all races have been organizing around an explicit women’s rights agenda since

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at least the 1950s, there remains a reluctance to identify themselves as ‘feminist’, a body of thought that is still widely stigmatized as being ‘white’ and on occasion ‘lesbian’. This is despite the fact that a weighty body of research indicates that women’s subordination makes women more vulnerable to HIV infection and is a fundamental driver of new infection. It is clear women’s empowerment will be needed to arrest the growth in new infections. This can only be obtained through effective, explicitly feminist AIDS activism led by black women, of the type suggested by Leclerc-Madlala. To return to racial divisions as a barrier to effective nascent AIDS activism, this problem was not unique to AIDS activism within the women’s movement, as gay organizations also fractured over racial divisions. Although, as this chapter argued, gay organizations were more alert to the risk of HIV transmission posed by unprotected sex between men. This may have been shaped by the epidemiologists’ earlier focus on HIV transmission between gay men both in South Africa and internationally and the fact that a significant body of literature on women’s gendered risk of HIV transmission only emerged from the mid-1990s. In turn, gay men’s deeper acceptance of risk may partially explain why the first South African AIDS activists to reveal that they were living with HIV were gay men. Lastly, the chapter explored how global linkages may have shaped feminist and gay rights AIDS activism. It argued that whereas gay AIDS activism gained financial support and strategic ideas for Northern gay AIDS activism, particularly from Scandinavian gay organizations, feminists’ thinking on AIDS was shaped by meeting women activists from other parts of Africa at conferences. It is impossible in the scope of a short chapter to draw out all the possible points of similarity and diversion between gay rights and feminist AIDS activism or the relationship between both groupings within AIDS activism in the past or today. While the historical research outlined here is preliminary and ongoing, it points towards how contemporary AIDS activism is shaped by longer trends. It has also pointed towards possible future constraints to nascent feminist activism directed at empowering women to assert their sexual rights.

Notes 1. At the time of writing in September 2006, the Treatment Action Campaign estimates that the government has only 175 000 people on treatment; by contrast there were 336 000 preventable AIDS deaths in 2005. 2. Gay and Lesbian Archive (GALA), Gay Association of South Africa (GASA), Gay Association of South Africa, Gay Association of South Africa/Gay Association of South Africa 6010 (GASA/GASA 6010) Box, Media Scrap Books, ‘Scrap Book Kept by Leon Eksteen who died in August 1986. He was the 5th Capetonian to die of AIDS’, Leon Eksteen, ‘ “Homosexual” disease kills SAA staff’, Argus, 4 January 1983. GALA, GASA, GASA/GASA 6010 Box, Media Scrap Books, ‘Scrap Book Kept

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3. 4.

5.

6. 7. 8.

9.

10.

11. 12.

13.

14. 15.

16. 17. 18. 19. 20.

by Leon Eksteen’, Leon Eksteen. ‘ “Gay” plague: More victims?’ Sunday Times, 9 January 1983, p.3. This is how Edward Stein has characterized the essentialist viewpoint on sexual orientation. GALA, GASA, GASA/GASA 6010 Box, Media Scrap Books, ‘Scrap Book Kept by Leon Eksteen’, Leon Eksteen, Shaun Harris, ‘Row brews over “moffie” posters’, unknown newspaper. GALA, GASA, GASA/GASA 6010 Box, Media Scrap Books, Vol. 8(5), ‘Gays angry over blood transfusion poster’, The Citizen, 29 January 1986, p.15. GALA, GASA, Gay Groups Minutes Etc Box, File A: National Gay Groups Minutes– Northern Cape, Eastern Cape, Natal Costal (Durban) and Port Elizabeth 1984–85, “GASA Natal Coast: Chairman’s Report 1984/5:Report of the Second AGM held on Friday, 19 April 1985 at GASA Natal Coast Office 51 Williams Rd, Congella, Durban”, p.11. Interview with Shamim Meer and Karen Hurt. Interview with Deborah Bonin, 2 February 2006, Yossi’s Restaurant, Durban, South Africa. Interview with Deborah Bonin. The progressive health movement included organizations such as the National Progressive Primary Health Care Network (NPPHCN), the National Medical and Dental Association (NAMDA) and the ANC’s Health Desk. South African History Archive (SAHA), 2457 Collection, Wits and UCT Women’s Movements and Powa Box, Women’s Charter for Effective Equality. Adopted at the National Convention convened by the Women’s National Coalition, 25–27 February 1994, p.6. Centre for Health Policy, Personal papers, Helen Schneider, (eds) Z. Stein and A. Zwi, Action on AIDS in Southern Africa: Maputo Conference on Health in Transition in Southern Africa, April 1990, L. Floyd, ‘HIV and AIDS in South Africa Today’, in (eds) Z. Stein and A. Zwi, Action on AIDS in Southern Africa: Maputo Conference on Health in Transition in Southern Africa, April 1990, (New York, 1990), p.86. Ibid. Centre for Health Policy, Women’s Health Project Archive, Manto Tsabalala Msimang, ‘An overview of some considerations in formulating policy on women’s health’, Paper presented at the 1990 Maputo conference on women’s health, 1.3:27, p.2. Centre for Health Policy, Personal papers, Helen Schneider, (eds) Z. Stein and A. Zwi, Action on AIDS in Southern Africa: Maputo Conference on Health in Southern Africa, April 1990, A. Zwi ‘HIV and AIDS in South Africa – Towards an Appropriate Public Health Response’ (New York, 1990), p.59. ‘Learning to live with AIDS’, SPEAK, February 1994, p.25. Bozzoli also notes that such functionalist explanations of sexism as having roots in capitalism neatly absolved the left of having to address its own internal sexism (Bozzoli, 1983: 142). S. Meer, ‘Relationships: A site of struggle’, Agenda, No. 11 ‘Sexual politics’, (1991), p.37. ‘I learned the hard way’, SPEAK, No. 38, May 1993, p.14. Interview with Promise Mthembu, 19 August 2003 at the Gender AIDS Forum Offices, Smith Street, Durban, South Africa. Liz Floyd argued AIDS felt ‘unreal’ for these reasons in the early 1990s (Floyd 1990: 85). ‘AIDS–Let’s Talk About It’, SPEAK, ‘Viva COSATU women’, No. 20, July–Aug. 1988.

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21. ‘Yesterday, today, tomorrow’, SPEAK, Feb.–Apr. 1986, p.10. 22. ‘We are not toys!!’, SPEAK, March–May 1987, p.5. 23. For instance the WNC charter contains a clause on violence against women advocating the establishment of shelters, counselling and freedom from sexual harassment (article 10) and article (8) calling for women to have choice on ‘the nature and frequency of sexual contact in marriage and intimate relationships’. SAHA, 2457 Collection, Wits and UCT Women’s Movements and Powa Box, File I18 National Women’s Coalition, Women’s Charter for Effective Equality. Adopted at the National Convention convened by the Women’s National Coalition, 25–27 February 1994, p.6. 24. Shireen Hassim’s personal papers, S. Hassim, ‘Women’s health projects in South Africa: A framework for funding’, Prepared for Oxfam Canada, January 1992, p.7. 25. A significant body of research addressing gendered barriers to HIV prevention in South Africa was only generated from the mid-1990s (Strebel 1992; Abdool Karim et al. 1995; Campbell 2000). 26. SPEAK No. 34, 1991, ‘Enough is enough: Joburg women march to stop violence against women’, p:11. 27. ‘Educating around AIDS’, SPEAK, No. 38, July 1992, p.25; Strebel 1992. 28. Hassim argues that it was ‘perhaps the closest that South Africa has come to having a strong women’s movement defined against the criterion of relative autonomy in the context of an alliance’ (2006b), p.8. 29. SAHA, 2457 Collection, Wits and UCT Women’s Movements and Powa Box, Women’s Charter for Effective Equality. Adopted at the National Convention convened by the Women’s National Coalition, 25–27 February, 1994, p.7. 30. I would argue in terms of this framework that race is another signifier which influences the construction of the category ‘women’ in South Africa both historically and in the present. 31. The impact of Kinsey’s research on how we the social constructionist debate (or the nature versus nurture debate) around sexual orientation have been discussed at length by Edward Stein (1990: 3–4). 32. Interview with Shamim Meer and Karen Hunt. Writing during the transition era, Cherryl Walker questioned to what extent the ANC was committed to women’s rights for their own sake or simply as a tool to mobilize women (1991: p xvi). 33. Interview with Deborah Bonin. 34. University of Witwatersrand Historical papers, Helen Joseph Papers A1985/P12, ANC Women’s League, Box P5-12 P Women, File H2.12: Women’s Movement, Report. Conference. Women & Gender in Southern Africa. 30 January–2 February, 1991. University of Natal, Durban, p.9. 35. Interview with D. Bonin. 36. Historical papers, Helen Joseph Papers A1985/P12, ANC Women’s League Box P5-12 P Women, File H2.12: Women’s Movement, Report. Conference. Women & Gender in Southern Africa. 30 January–2 February, 1991. University of Natal, Durban, ‘Statement and recommendations based on a meeting of Black women on Saturday, 2 February 1991 at the Women and Gender in Souther Africa Conference’, p.19. 37. SAHA, Helen Joseph Papers A1985/P12, ANC Women’s League, Box P5-12 P, File H2.12: Women’s Movement, Women, Report. Conference. Women & Gender in Southern Africa. 30 January–2 February, 1991. University of Natal, Durban ,‘Statement by Lesbian women: Based on a report-back of a discussion by a group of lesbians at the conference on the gap of lesbian issues’, pp.20–1.

196 The Politics of AIDS 38. 39. 40. 41. 42. 43.

44.

45.

46. 47. 48.

Ibid. Interview with Bev Ditsie, 5 October 2006, Johannesburg. Interview with Bev Ditsie. GASA Natal Coast: Chairman’s Report 1984/5’, p.11. GALA, Peter Tatchell Collection, AM2715, Peter Tatchell, ‘Out and against apartheid’, HIM, No. 28, p.12. Bjorn Ivensen and Beate Christiansen are noted as representatives of Norweigian funders (LLH Norway) and as co-founders of TAP, SAHA, GALA, Triangle Project Collection AM2974, Box B9.1.1–AIDS Consortium–Broader Community Liaison, Minutes, ‘AIDS Consortium Meeting: 23 January 1993: Minutes’, p.2. GALA, Triangle Project Collection AM2974, Box B9.1.1–AIDS Consortium– Broader Community Liaison, Minutes, ‘AIDS Consortium Meeting: 23 February 1993: Minutes’, p.3; SAHA, GALA, Triangle Project Collection AM2974, Box B9.1.1–AIDS Consortium–Broader Community Liaison, Minutes, ‘AIDS Consortium Meeting: 23 March 1993: Minutes’, p.10. Indeed, this demand for accountability in the AIDS sector mirrors TAC’s critique of NAPWA as lacking accountability to people living with HIV and for not being financially transparent (Hassan 2004). ‘We Miss You All: AIDS in the Family’, SPEAK, October 1992. ‘Act Against AIDS Now!’, SPEAK, March 1993, p.24. I am referring to their call for support for the victim in December 2005 followed by their welcoming of Zuma’s ANC National Executive Committee’s reinstatement of him as Deputy President of the ANC following his acquittal in May 2006 (ANCWL 2006; Mail & Guardian 2006).

References African National Congress Women’s League (2006), ANCWL media release on the rape charges against Deputy President Jacob Zuma. Abdool Karim, Q. et al. (1995), ‘Reducing the risk of HIV infection among South African sex workers: Socio-economic and gender barriers’. American Journal of Public Health, 85(11): 1521–5. AIDS Consortium (1993), AIDS Consortium Meeting: 23 February 1993: Minutes. AIDS Consortium (1993), AIDS Consortium Meeting: 23 March 1993: Minutes. Altman, D. (1993), Homosexual Oppression and Liberation. London: Serpent’s Tail. Bonin, D. (1989), COSATU Congress. Agenda, 5: 19. Bonin, D. (1990), 1st Regional Meeting of Women and Health in Africa. Agenda, 6: 33–4. Bozzoli, B. (1983), ‘Marxism, Feminism and South African Studies’. Journal of Southern African Studies, 9(2): 139–71. Butler, J. (1993), Bodies that Matter: On the Discursive Limits of ‘Sex’. New York and London: Routledge. Campbell, C. (2000), "Selling sex in the time of AIDS: The psycho-social context of condom use by southern African sex workers. Social Science and Medicine, 50: 479–94. Conference on Women & Gender in Southern Africa (1991), Report. Conference. Women & Gender in Southern Africa. 30 January–2 February, 1991. Durban: University of Natal. Delius, P. and Glaser, C. (2002), ‘Sexual Socialisation in South Africa: A Historical Perspective’. African Studies, 61(1).

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Epprecht, M. (2004), Hungochani: The history of dissident sexuality in Southern Africa, Montreal and Kingston: McGill-Queens University Press. Floyd, L. (1990), ‘HIV and AIDS in South Africa Today’. In Z. Stein and A. Zwi (eds) Action on AIDS in Southern Africa: Maputo Conference on Health in Transition in Southern Africa, April 1990. New York: Committee for Health in Southern Africa. Foucault, M. (1976), The History of Sexuality: An Introduction, Transl. Robert Hurley. Harmondsworth: Penguin. Friedman, S. and Mottiar, S. (2006), ‘Rewarding engagement?: The Treatment Action Campaign and the politics of HIV/AIDS’. In R. Ballard, A. Habib, and I. Valodia (eds) Voices of Protest: Social Movements in Post-Apartheid South Africa. Pietermaritzburg: University of KwaZulu-Natal Press. Gay Association of South Africa (1985), GASA Natal Coast: Chairman’s Report 1984/5: Report of the Second AGM held on Friday, 19 April 1985 at GASA Natal Coast Office, 51 Williams Rd, Congella, Durban. Gevisser, M. (1994), ‘A different fight for freedom’. In M. Gevisser and E. Cameron (eds) Defiant Desire: Gay and lesbian lives in South Africa. Johannesburg: Ravan Press. Grundfest-Schoepf, B. (2004), ‘AIDS, history and struggles over meaning’. In E. Kalipeni, S. Craddock, J.R. Oppong and Ghosh, J. HIV & AIDS in Africa: Beyond Epidemiology. Oxford: Blackwell. Harris, S. (unknown), ‘Row brews over ‘moffie’ posters’, Unknown newspaper. Hassan, F. (2004), ‘Re: Request for urgent forensic investigation into prima facie allegations of an abuse of public funds”, Letter dated 8 March 2004 addressed to Auditor general from AIDS Law Project on behalf of TAC. Available at: www.tac. org.za/. Hassim, S. (1992), Women’s health projects in South Africa: A framework for funding prepared for Oxfam Canada, January 1992. Unpublished. Hassim, S. (2006a), Women’s Organizations and Democracy in South Africa: Contesting Authority. Scottville: University of KwaZulu-Natal Press. Hassim, S. (2006b), ‘Voices, hierarchies and spaces: Reconfiguring the women’s movement in democratic South Africa’ In R. Ballard, A. Habib, and I. Valodia (eds) Voices of Protest: Social Movements in Post-Apartheid South Africa. Pietermaritzburg: University of KwaZulu-Natal Press. Heywood, M. (2004), ‘The price of denial’. Development Update: From disaster to development. HIV and AIDS in Southern Africa, 5(3): 93–122. Holmes, R. (1994), Selling sex for a living. Agenda, 23. ‘Homosexual’ disease kills SAA staff”, Argus, 4 January 1983. Horowitz, S. (2002), ‘Migrancy and HIV/AIDS: A historical perspective’. South African Historical Journal, 45: 103–23. Hunter, M. (2002), ‘The Materiality of Everyday Sex: Thinking beyond prostitution’. African Studies. 61(1): 99–120. Mail & Guardian (2006), ‘ANC Women’s League hails Zuma decision’. Mail & Guardian, 15 May 2006, Available at www.mg.co.za. Matlala, N. (1993), ‘Don’t take out your condom in a taxi’. SPEAK, 55. Marks, S. (2002), ‘An Epidemic Waiting to Happen? The Spread of HIV/AIDS in South Africa in Social and Historical Perspective’. African Studies, 61: 13–26. Mbali, M. and Connor, C. (2007), ‘South African AIDS activism – A feminist view’. In E. Win, C. Clark, A. Holmes (eds) Women Navigate Power. Johannesburg: ActionAid. Meer, S. (1991), ‘Relationships: A site of struggle”. Agenda, 11: 37. Panda, T. (1992), ‘Gay and proud’. SPEAK, December 1992.

198 The Politics of AIDS Schoub, B.D. et al. (1988), ‘Epidemiological considerations of the present status and future growth of the acquired immune immunodeficiency syndrome epidemic in South Africa’. South African Medical Journal, 74: 153. Sher, R. (1989), ‘HIV infection in South Africa 1982–1989: A review’. South African Medical Journal, 76: 314–18. SPEAK (1986), ‘Yesterday, today, tomorrow’. SPEAK, Feb.–Apr., p.10. SPEAK (1987), ‘We are not toys!!’. SPEAK, March–May, p.5. SPEAK (1988), ‘AIDS-Let’s Talk About It’. SPEAK, ‘Viva COSATU women’, 20, July–Aug. 1988. SPEAK (1992), ‘Educating around AIDS’. SPEAK, 38, July, p.25. SPEAK (1992), ‘We Miss You All: AIDS in the Family’. SPEAK, October. SPEAK (1993), ‘Act Against AIDS Now!’. SPEAK, March, p.24. SPEAK (1993), ‘I learned the hard way’. SPEAK, 38, May, p.14. SPEAK (1994), ‘Learning to live with AIDS’. SPEAK, February, p.25. Stein, E. (1990), ‘Chapter One: Introduction’. In E. Stein (ed.) Forms of desire: Sexual orientation and the social constructionist controversy. New York and London: Routledge. Strebel, A. (1992), ‘There’s Absolutely Nothing I Can Do, Just Believe in God’: South African women with AIDS’. Agenda, 12: 50–1. Sunday Times (1983), ‘ “Gay” plague: More victims’. Sunday Times, 9 January. Susser, I. (2002), Health rights for women in the age of AIDS. International Journal of Epidemiology, 31(1): 45–8. Tallis, V. (1992), Lesbians and AIDS. Agenda, 15, pp.69–80. Tacthell, P. (Undated), Out and against apartheid. HIM, 28, p.12. The Citizen. (1986), ‘Gays angry over blood transfusion poster’. The Citizen, 29 January 1986. Tshabalala-Msimang, M. (1990), ‘An overview of some considerations in formulating policy on women’s health’, Paper presented at the 1990 Maputo conference on women’s health. Walker, C. (1991), Women and Resistance in South Africa. New York: Monthly Review Press. White, L. (1990), The Comforts of Home: Prostitution in Colonial Nairobi. Chicago and London: University of Chicago Press. Women’s National Coalition (1994), Women’s Charter for Effective Equality. Adopted at the National Convention convened by the Women’s National Coalition, 25–27 February 1994. Zwi, A. (1990), ‘HIV and AIDS in South Africa – Towards an Appropriate Public Health Response. In Z. Stein and A. Zwi (eds) Action on AIDS in Southern Africa: Maputo Conference on Health in Transition in Southern Africa, April 1990. New York: Committee for Health in Southern Africa.

12 Surviving Politics and the Politics of Surviving: Understanding Community Mobilization in South Africa May Chazan*

Introduction Social mobilization is a growing theme among AIDS researchers in southern Africa. As many become increasingly weary of attempts to measure and predict ‘impact’ (which could mean anything from macro-economic effects to psychological traumas), and as the promise of technological interventions wanes, some scholars are shifting their gaze to learn from what those most affected are doing every day to respond to HIV/AIDS – a shift in focus from formulaic or sequential views of impact to understanding differentiated, creative, and perhaps unpredictable collective responses. In South Africa, ‘local’1 responses to HIV/AIDS may shape how the epidemic is experienced by many. These responses appear to involve people organizing within communities around prevention, care, support, training, advocacy and treatment, and they may collectively influence the future impact of AIDS on households, communities and the society more broadly (Birdsall and Kelly 2005). Yet, amid the escalating epidemic, the country’s rapid social, economic and political transition, and the changing roles of the state, civil society and international actors, emerge a multitude of unanswered questions. Indeed, little is known about why and how local mobilization is taking place, and what effect these efforts are having. Aside from substantive scholarly interest in South Africa’s Treatment Action Campaign (TAC, see Chapters 10 and 11), there is currently only a small body of research on other forms of social mobilization around AIDS (e.g., Campbell et al. 2002; Birdsall and Kelly 2005; Teljeur 2002). Further, while there are existing literatures that could inform the study of community AIDS mobilization – among these social movement theories – the assumptions embedded within the central and overlapping concepts of ‘local’, ‘community’, ‘civil society’ and ‘mobilization’ remain under-theorised in the AIDS field. 199

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Our limited understanding in this area is as much a conceptual gap as an empirical one. There is a need for more detailed, nuanced and integrated understandings of how and to what end communities are organizing around this growing epidemic. This chapter therefore has three objectives: (1) to explore why, how and where community mobilizations are taking place in South Africa, through examination of both existing and primary research;2 (2) to consider community responses to HIV/ AIDS through a lens of social movement theory in order to bring new conceptual tools and offer a more theorized understanding of community AIDS mobilization; and (3) to offer potential directions (both conceptual and empirical) for future research. It aims primarily to extend the conceptual context in which community responses are framed. The chapter begins with an examination of the conceptual terrain: how community mobilization is understood and how a broader engagement with social movement theories might add to this discussion. Based on new research with community group members, activists, organizers, and other researchers, it then summarizes what activities are taking place in response to HIV/ AIDS within South African communities, who is involved, why mobilization is taking place, and how and where it is happening. The chapter ends by revisiting current conceptualizations of community mobilization in light of the empirical research.

HIV/AIDS and social mobilization in South Africa: the conceptual terrain This chapter draws from three intersecting bodies of literature: research on ‘local’, ‘grassroots’ or ‘survivalist’ AIDS responses (e.g., Campbell et al. 2002; Birdsall and Kelly 2005; Teljeur 2002); analyses of South Africa’s AIDS activism and the Treatment Action Campaign (e.g., Friedman and Mottiar 2004; Robins 2004); and the social movements literature more broadly (e.g., Della Porta and Diani 1999; Tarrow 1998; Ballard et al. (eds) 2006). In mapping the conceptual terrain of this chapter, I will thus begin by outlining key themes and limitations within these literatures – that is, what we know, what we assume, and how we try to explain ‘local’ AIDS mobilizations in South Africa.

A tale of two mobilizations: taking stock of community response Two ‘types’ of HIV/AIDS mobilizations are commonly cited among academics, advocates and community organizers in South Africa: (1) activism, most often associated with TAC, and understood as lobbying for policy change or making overt demands on government or pharmaceutical companies; and (2) ‘survivalist’ activities, or the collective efforts of ‘the poor’ to

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‘cope’ with HIV/AIDS (i.e., care for the sick, generate incomes, and mitigate the epidemic’s impacts). Although not specifically the focus of this chapter, AIDS activism (particularly TAC actions and strategies) has been researched extensively in South Africa and thus warrants attention here – the themes and issues arising within this area may lend insights into other types of mobilizations. The emphasis on TAC has likely been because of its unprecedented successes as a treatment lobby. In 2002, TAC took the South African government to court to demand Nevirapine for prevention of mother-to-child transmission on the basis that access to this medication is women’s constitutional right; TAC won. In 2003, TAC went to court in conjunction with the government to demand lower cost anti-retroviral therapies (ARVs) from pharmaceutical companies; the case was won when pharmaceutical companies withdrew (Friedman and Mottiar 2004). Later that year, TAC instigated mass civil action, demanding a treatment ‘roll-out’ that would make ARVs accessible through the public health system. The government reportedly responded with a plan to treat 53 000 people by April 2004, just after the third national election (TAC 2006). TAC is a broad, well-networked and well-resourced social movement organization, with links to many other groups nationally, internationally and within communities. In addition to numerous transnational relationships, TAC has sought alliances with unions, churches and community-based organizations within South Africa – there are over 1000 organizations who are TAC members. It has become a node of AIDS initiatives (Friedman and Mottiar 2004). TAC’s transnational networks and its contribution to global AIDS activism have received significant attention. Other scholars have investigated TAC as part of their broader inquiry into citizenship and democracy in postapartheid South Africa, approaching it as one potential venue for expanding the voices of citizens, especially poor citizens, in policy processes (Friedman 2006). Still others have highlighted TAC’s historical dimensions and its linkages with the anti-apartheid struggle (i.e., noting how anti-apartheid leaders are integrally involved in the organization and examining the borrowing and reinvention of anti-apartheid symbol and strategy) (Robins 2006a). While TAC’s national and transnational dimensions have been most highly studied, a smaller but growing literature examines the experiences and motivations of members of TAC’s community support groups. What has emerged is that engagement in these groups is often motivated by shared near-death experiences and members’ transformations or ‘re-births’ as people who are determined to ‘live positively’ with HIV. They are driven not only by struggles over civil rights, but also by spirituality, religion, family and community (Robins 2004; Robins 2006b). Engagement in grassroots TAC groups, furthermore, appears to have empowering effects, where members become more likely to voice their concerns in provincial and national meetings (Friedman and Mottiar 2004). Thus TAC-based activism has most

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commonly been framed as a global and national movement, but it clearly has grassroots components; it is simultaneously globalized and localized. The degrees to which national and grassroots agendas differ, however, and the psychosocial dimensions of rights-based mobilizations, require further investigation. TAC membership is overwhelmingly women (i.e., ‘black township women’), especially within community initiatives and support groups (Dlamini 2006). Gender politics within TAC and the gender dynamics of AIDS activism have, however, not been comprehensively addressed in the literature. Moreover, gender issues are on the TAC agenda nationally, but there are hints that TAC may be splintered along gender lines in some contexts; in KwaZulu-Natal the emergence of groups like the Gender AIDS Forum may be one such example (Alexander 2006). Yet, despite its research and media attention, TAC is not the only civil society organization engaged with AIDS, and its reach is far from universal. There are indeed thousands of other non-governmental and faith-based AIDS organizations operating; these appear to be springing up all over the country, including in the more remote urban, peri-urban and rural areas where TAC has yet to penetrate. At the community level, ‘local’ responses to the epidemic – also referred to as ‘survivalist’, community or grassroots mobilization – involve people coming together around prevention, care, support, training, advocacy and treatment. They are understood as encompassing a spectrum of organizational structures from informal networks of relatives, neighbours and friends, through to formal activities undertaken by local government, nongovernment, community-based, faith-based and civil-society organizations. These ‘community’ initiatives are not necessarily discrete from national civil society responses, although it appears that many are operating independently, with few ties to other initiatives or networks (Birdsall and Kelly 2005). Some are linked up through South Africa’s AIDS Consortium and other umbrella organizations; others are apparently unconnected or linked only to near-by initiatives. While comparatively very little is known about how ‘survivalist’ mobilization is taking place at the community level, early evidence suggests that these efforts are significantly differentiated between places and are changing quickly in response to the evolving epidemic. Some scholars have suggested that although these initiatives tend to be small-scale and unconnected, they may collectively alter the impact of the epidemic, not only within households and communities, but within the society more generally (Birdsall and Kelly 2005). Preliminary evidence indicates that, as with TAC, this kind of mobilization is highly gendered; women, and especially older women, are the ones organizing to care for the sick and the orphaned (Marais 2005). Research in this area has focused on surveying what groups are doing (e.g., home-based care, income generation projects, community outreach,

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education), and how they are funded (Teljeur 2002; Birdsall and Kelly 2005). Academic and policy dialogue has emphasized ‘scaling up’ community initiatives, to make them larger and more efficient, and learning from ‘best practices’ to reproduce initiatives successful in one community within other contexts. While learning from the experiences of those most affected is crucial, the implications of ‘scaling up’ and the transferability of projects between communities have yet to be adequately examined. From a theoretical perspective, community responses tend to be framed as ahistorical and apolitical, with research focusing on impact and effect rather than on the social, economic and political contexts in which groups arise, operate and, potentially, exert influence (Friedman 2006). Community AIDS initiatives are often depoliticized alongside an assumption that mobilization is ‘empowering’ for members involved. By contrast, a small number of scholars are questioning this assumption of empowerment, suggesting instead that ‘local’ responses may be largely neoliberal outgrowths: conceptualized predominantly in economic terms (not understood for their complex historical, political and psychosocial dimensions), intended to shift responsibility for service delivery onto ‘communities’ and absolve the state from responsibility, and thereby serving to compound the burdens on the poor (Marais 2005). A number of communitarian explanations have been put forth to account for why and how groups form, and these tend to reinforce assumptions that groups and group members are not driven by political motivations; they focus more on forms of altruism and less on understanding social expectations and/ or resistances against social systems. Academic emphasis has been placed on understanding these initiatives as aspects of voluntarism, depicting the bonds of ‘community’ or ‘social capital’ as positive interpersonal relations that are mostly inclusive and may protect against infection and impact (Campbell et al. 2002), as well as motivations stemming from philosophies of horizontal philanthropy (caring and helping behaviours between the poor themselves) and ubuntu (a moral philosophy of communalism based on a belief in shared destiny) (Fowler 2004). Yet, due to limited primary research in this area, we actually know very little about the perceptions, motivations and experiences of community organizers and members. Thus, ‘activism’ and ‘survivalism’ tend to be conceptualized and researched discretely and separately. Moreover, there appears to be a tension between ideologies embedded in much South African activism and realities of ‘survivalist’ HIV/ AIDS responses: ‘activism’ is viewed as fundamentally challenging the structures that shift social burdens onto marginalized groups; ‘survivalism’ is perceived as the acceptance of (or the taking of responsibility for) these burdens by impoverished citizens themselves. While depoliticized in some academic (especially development-oriented) literature, ‘survivalist’ activities are seen by certain academics and activists as the antithesis to politicized movements. The framing of these initiatives in depoliticized ways is,

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in some instances, viewed as quietly legitimizing ‘the system’ and justifying state withdrawal from care (Alexander 2006; Pithouse 2006). Yet, the majority of community mobilizations are ‘survivalist’ in nature. Scholars are thus trying to make sense of community AIDS mobilizations from a number of different perspectives, but we continue to face limitations in our ability to account for what is happening and why. Explanations tend toward categorizing and dichotomizing social mobilizations (e.g., national versus grassroots actors, empowering versus marginalizing effects, activist versus ‘survivalist’ mobilizations), but we do not have adequate empirical research to support these categorizations. What research we do have does not necessarily reflect our current conceptual frameworks. These dichotomies may be in danger of delineating differences where lines are blurry, as well as of employing rudimentary explanatory devices where we have yet to grapple with the complexities of motivations, perceptions, and long-term effects. Overall, there is a plethora of research on TAC and on South Africa’s AIDS activism, while the seemingly much more widespread ‘survivalist’ mobilizations remain under-researched. It is unclear what community groups are doing, who is involved, why they form and grow, how they differ in different communities, how they link up with other groups and larger networks, how they are changing and what effects they are having. The burning question is what societal effects might ensue from the widespread and varied forms of social organization currently underway. The minimal existing research in this area clearly requires further conceptual development and engagement with various theories of social mobilization. It is thus to one ‘new’ theoretical perspective that I now turn.

Digging deeper: AIDS responses through a social movement theory lens Many bodies of scholarship offer insights into how and why groups organize. The questions guiding this study emerged predominantly from one such area: social movement theories. To date, analyses of TAC and transnational AIDS activism have drawn on this literature extensively, but research into other forms of community mobilizations, particularly ‘survivalist’ responses, has yet to engage with this theoretical perspective (likely because the two ‘types’ of mobilizations tend to be viewed as different). The following is a more detailed examination of how community mobilization is emerging around AIDS through a lens of social movement theorizing. This discussion is intended to (a) overview social movement research; (b) set HIV/ AIDS mobilizations within a context of contemporary social mobilization in South Africa; and (c) highlight relevant questions that emerge from this theoretical perspective.

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There have been many definitions of what constitutes a social movement, with some common elements among them. Social movements are viewed as existing largely in the sphere of civil society; as organized expressions of interests operating in a space between family, state and market; as socially-directed collectives comprising multiple organizations and networks; as sharing some element of collective identity; and as focused on changing some dimension of the social, political or economic system (Ballard et al. 2005). Often cited is Tarrow’s (1998) definition of social movements as ‘sequences of contentious politics. . . based on common purpose and social solidarities in sustained interaction with elites, opponents and authorities’, where contentious politics are conducted by ‘people who lack regular access to institutions, who act in the name of new or unaccepted claims, and who behave in ways that fundamentally challenge authorities’ (pp. 2–4). The dimensions of central importance here are the challenging of social systems by people who perceive some sense of exclusion; this does not necessarily imply a desire to overthrow or completely reject these systems or their authorities. Not all struggles are considered to be movements, although they do have the potential to evolve into such (Ballard et al. 2005). As discussed earlier, most community AIDS responses are ‘survivalist’; they are often assumed to be apolitical, unconnected with other organizations, and not making demands on the state (or any other elite, opponent or authority). As such, many scholars do not consider these to be social movement organisations (Habib 2003). Much debate within social movement research has focused on understanding the instrumental tactics and strategies used by social movement organizations, as well as on delineating what qualifies as a social movement. These are, however, not the debates with which I wish to engage. While the purpose here is not to decide what is and what is not a social movement organization, there are a number of good reasons for examining ‘survivalist’ mobilizations through a lens of social movement theorizing. First, even if we assume that ‘survivalist’ groups are not engaged in contentious politics, the extent to which these struggles may become part of a larger social movement or may affect broader social change is yet unknown. Second, it may be that there are some elements of contention driving community group members, but whether and how contentious politics play out in ‘survivalist’ mobilizations is not well understood. While likely not a full rejection of authority, these groups may pose a sort of middle-ground contestation: challenging how resources are allocated; articulating the needs and perspectives of those ‘on the ground’, especially the poor; and contributing demands for inclusion in policies and programmes. If this is the case, ‘survivalist’ groups could be seen as manifestations of democracy. It is also possible that group members perceive themselves to be excluded from the democratic system.

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Third, whether defined as part of a social movement or not, it would seem that in a context of persistent stigma and ‘denialism’, to become publicly involved in an AIDS group is to fundamentally challenge certain social systems. These groups may be a response to those who collectively deny them human integrity through discrimination; and that through recourse to communitarian and/or spiritual ethos, members are resisting exclusion from their immediate ‘communities’ or from society. It may also be that these groups pose a challenge to how various levels of government are responding to the epidemic. Fourth, it seems that unravelling the gender politics of AIDS mobilizations is crucial – women’s groups may be inherently political, as nodes of power (and/ or resistance). At the community level, where men are often absent and do not appear to be organizing to the same extent around AIDS (Marais 2005), the political dimensions of women’s mobilization should not be overlooked or viewed as contained within domestic spheres. Understanding gender dynamics and politics within South African communities may well be central to making sense of ‘survivalist’ mobilizations. Finally, social movement theorists have examined the formation, growth, and objectives of various forms of social organization, and thus they can likely contribute to our understanding collective responses to AIDS. Below is an overview of four overlapping sets of factors (relating to four areas of social movement research) that influence how social movements form and operate: (1) resource availability (or ‘resource mobilization’); (2) political opportunities (or ‘political opportunity structure’); (3) collective identities (or ‘new social movement theory’); and (4) social inequalities (see Table 12.1 for a summary). These four intersecting themes have given rise to a number of key questions, which are outlined below and which frame this study. The resource mobilization school has suggested that a grievance alone is not enough to explain the development of a movement; rather, sufficient resources are required in order for groups to engage in activism (McCarthy and Zald 1979). Given the resource poor settings in which AIDS mobilization Table 12.1 Factors affecting whether and how people organize (themes in social movement research) 1. Resource availability 2. Political opportunities

3. Collective identities

4. Social inequalities

Mobilization depends on sufficient resources. Mobilization is shaped by institutional structures, access to polity members and voice in lobbying for policy change. Mobilization is influenced by how social organizations perceive their roles and sense of agency, frame their collective pursuits, and choose to position the demands they make. Race-gender-class-sexuality-age shape the nature of social mobilizations and their effects.

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is taking place in South Africa, this approach raises several questions:

• How is access to resources (or lack thereof) affecting the nature, scale, and form of ‘survivalist’ mobilizations?

• If community AIDS groups could access resources, would they ‘scale up’? Would they make political demands?

• How might linking into national and international networks influence such processes? Political opportunity structure approaches have suggested the need to consider not only the availability of resources, but also the political opportunities offered to groups: whether institutional frameworks are open to processes of activism; how easily groups can access or form alliances with polity members; and whether groups face repression (from the state or other groups) (Tarrow 1998; Della Porta and Diani 1999). Accordingly, Ballard et al. (2005) have noted that contemporary South African social movements are influenced by the opportunities and constraints in the post-1994 political environment. These are not spontaneous grassroots uprisings; instead, they depend on access to material and human resources, solidarity networks and, often, external interventions from prominent personalities. Contemporary movement leaders often have roots in the country’s liberation (and in the ANC), and thus many of their affiliated social movement organizations now have access to government members. Yet, these are not merely ‘carry-over’ movements. While current movements may draw on anti-apartheid networks and actors (and, to varying extents, imagery), they are also in some ways ‘new’ forms of mobilization (Ballard et al. 2005). The institutional environment changed drastically post-1994. Immediately after the transition, state–civil society relations transformed from adversarial opposition to a more collaborative developmentoriented dynamic. The government had gained legitimacy and was generally viewed as working to alleviate deprivation. Thus, while conditions remained poor for many, marginalized groups appeared not inclined to mobilize. If communities had wanted to mobilize, this would have been difficult because much of the oppositional structure had been absorbed into the state apparatus. Many prominent social justice actors were internalized into such activities as drafting the constitution and developing redress policies (Gumede 2005); many non-governmental and community-based organizations became involved in development delivery (Habib 2003); and it was (and has remained) taboo for those once engaged in the anti-apartheid movement to speak out against the ANC – akin to breaking ranks (Gumede 2005). The post-apartheid fusion of civil society and state,3 especially the realization that many community organizations took on development delivery, could begin to explain the tension elucidated earlier – where some academics and activists view ‘survivalist’ AIDS activities as legitimizing a system of state withdrawal. Yet, whether community groups actually perceive a

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downloading of responsibility, whether they make (or would like to make) demands on government, and whether they have or perceive themselves to have opportunities to do so, all remain unknown. Ballard et al. (2005) describe the mid- to late 1990s as a ‘hiatus’ in activism, spurred by certain changes in the political structure. In recent years, however, social movements have emerged in part because of the opening of other political opportunities. For example, TAC has drawn on the new constitution’s enshrinement of first (civil and political) and second (social, economic and cultural) generation rights to mobilize groups around the ‘right to health’. This changing political structure, and its implications for social mobilization, raises additional questions:

• To what extent is community mobilization ‘new’ as a result of AIDS? Are HIV/ AIDS initiatives drawing on or re-mobilizing old networks for new purposes? • What are the structural opportunities and/ or constraints facing community groups? • How do groups perceive their government’s responses to AIDS and their own capacities for involvement in political processes? Proponents of new social movement theory further examine the roles of collective values, identities and perceptions in shaping movements – going beyond the structural to the representational. This is an area that could significantly expand what is known about ‘survivalist’ AIDS mobilizations, and thus is central to the analysis in this chapter. Some contend that effective movements are based around (a) a sense of injustice, (b) an element of collective identity (as well as an external ‘other’ that can be blamed for the problem or seen to have a responsibility in the solution), and (c) a perception of collective agency (Klandermans 1997). An important element of new social movement analysis is getting to grips with what discourses frame how groups organize, what issues they include and exclude from their mandates, and where they perceive injustices. In this regard, two examples are of particular relevance to AIDS mobilizations. First, a broader orthodoxy of framing justice issues in terms of cultural and class identities in contemporary South African movements could begin to explain why gender politics within TAC and AIDS mobilizations more generally have not been comprehensively addressed.4 Present-day discourses have again been influenced by the post-apartheid moment – struggles are no longer about liberation, there has been a shift from race-based to culturaland class-based discourses, and overcoming racial oppression has given way to empowering ‘Africanness’ (Gumede 2005). There is also an ‘ultra left’ movement opposing pro-growth policies: this movement is comprised largely of political actors previously connected to the anti-apartheid struggle, who now have taken on the anti-globalization/ anti-privatization/pro-poor fight

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from a clearly defined class-based perspective (Ballard et al. 2005). Among certain activists and scholars, the dominance of these cultural- and classbased discourses is seen to be minimizing issues of gender; there is a call for critical analyses of how the intersections of race, class, and gender affect AIDS groups’ collective identities, values and perceptions (Alexander 2006; see also Chapters 9–11 and 16 for discussion of this theme). Second, the new social movement school provides insights into why AIDS activism initially focused so explicitly on treatment, rather than on other dimensions of the epidemic, such as prevention, impact mitigation or care provision. From this perspective, access to treatment can clearly be framed as a social justice issue (i.e., who has access, who does not, and why?), and this framing allows for a definable opposition (i.e., the state, certain politicians, or pharmaceutical companies). The denial of treatment symbolizes a more direct subversion of ‘rights’ than, for example, attempting to provide redress for the underlying social, economic and political causes of the epidemic, or to define an opposition around prevention, given the complex nature of who is to blame and who should take responsibility. Moreover, it could be, in part, because ‘survivalist’ groups are organizing around prevention, impacts and care provision (where the injustices and perpetrators are far less clear than in treatment lobbies) that they are perceived as separate from activist mobilizations. This is not to say that, as the effects of AIDS escalate, more blatant forms of ‘activism’ against the epidemic’s uneven impacts might not develop. Future mobilization might be expected around a ‘right’ to a comprehensive social security system in order to assist impoverished families in caring for the ill and the orphaned.5 However, ‘survivalist’ activities such as home-based care and income generation have not yet become central to the activism agenda, and are not yet widely framed as social justice issues. The question, then, is why? The ‘new social movement’ school would point to perceptions – dominant assumptions around care-taking responsibilities. As discussed earlier, care-taking tends not to be framed in terms of state responsibility in AIDS discourses in South Africa; rather the focus has been on ‘community’ and ‘home-based’ responses, which some critics point out mean poor women bearing the burdens (Marais 2005). This is also reinforced by, and justified through, the identity-based discourse of ubuntu – again, an ethos that wellbeing comes from communalism, or the bonding sense of shared destinies, resilience and mutual assistance. It may be that group members do not view the burden on women or on ‘communities’ as an injustice, although little is actually known about the perceptions of community groups themselves. Thus, the ‘new social movement’ tradition raises a number of key questions about what drives ‘local’ AIDS mobilizations:

• What discourses frame community groups’ philosophies and activities? • Do they perceive an injustice? Do they perceive an opposition?

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• How do they perceive their roles? • How do they perceive their capacity to affect change? Finally, social movement theorists have examined the effects of social inequalities on movement organizing, suggesting that race, class and gender can interact in ways that can amplify or moderate mobilization (Kumba 2000; Cohen 1999). From this perspective, and given that mobilization appears to be taking place predominantly among older women, there may be a need to ask how the intersections between gender–class–race and generation affect groups’ abilities to access resources, apply for new social transfers, and link with social movement networks; and how these layers intersect to affect their political opportunities, identities and perceived roles. Again, a number of questions are raised:

• Do, or how do, the gender, class, race and age dynamics (and their variant combinations and intersections) within groups affect their collective values and identities? Their leveraging of resources and support? Their political opportunities? • Is community mobilization ‘empowering’ for groups members (i.e., predominantly women) and/ or is it increasing their burden? • Might the feminization of community mobilization reproduce gender inequalities and the ‘naturalness’ of women’s roles as care-givers? The questions arising from this conceptual mapping have collectively guided this study, although clearly not all can be addressed in this chapter. Nevertheless, this discussion has served to situate community-level AIDS responses within South Africa’s historical, political, social and economic context, and within a context of contemporary South African movements. I will return to these questions and issues towards the end of the chapter in light of what we are seeing taking place ‘on the ground’.

Community mobilizations ‘on-the-ground’: What? Who? Why? How? Where? Having mapped the theoretical terrain of HIV/ AIDS mobilizations, I turn now to a brief synopsis of findings from interviews with members of eight ‘survivalist’ community AIDS projects, as well as from focus groups and interviews with other community organizers, advocates, activists and researchers throughout South Africa (see Chazan 2006 for detailed empirical findings). The synopsis focuses predominantly on the experiences and perceptions of community group members from:

• Mothers-2-Mothers (in Khayelitsha, a township of Cape Town, Western Cape)

• Malibongwe Women’s Development (in Athlone, Cape Town)

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• Qaphelani Community Outreach (in Osizweni, a township of Newcastle, in the predominatly rural Amajuba region of KwaZulu-Natal) Sihlangene Support Group (in the city of Newcastle) Buhlebuzile Group (in Vosloorus, a township of Johannesburg, Gauteng) Vosloorus Home Care Services (in Vosloorus) Kennedy Road Drop-in Centre (in an urban shack settlement in Durban, KwaZulu-Natal) • Hillcrest AIDS Centre Trust (in Hillcrest, a suburb of Durban).

• • • •

The summary that follows considers the questions: What is taking place in South African communities? Who is involved? Why is it happening? How are groups managing to mobilize? Where is this occurring?

What? In Guguletu we have had big impacts because now there is a demand for training; people are asking us to do training. Some have gone on to train as nurses after doing our training, others have found jobs. The course gave them skills and knowledge. I give them certificates, which boosts their esteem. We are getting people who were sitting at home because of the unemployment participating, and now we see changes in the way they talk, the way they dress. Some start to volunteer and then find jobs. The community goes to them for advice. (HIV/ AIDS Coordinator, Malibongwe Women’s Development) The eight community initiatives in this study are engaged in a variety of overlapping activities, including home-based care, income generation projects such as community gardens and crafts projects (to assist with financial burdens on AIDS-affected families), support groups, respite units and hospices, drop-in and day care centres, community outreach (such as disseminating food packages), projects to assist with accessing social grants, services and treatment, treatment literacy initiatives, and so on. The majority of projects are addressing not only HIV/ AIDS but also broader social struggles, such as unemployment and food insecurity. The groups range from minimally funded and affiliated with other groups to highly networked and internationally funded projects. Given the current assumptions around community AIDS projects, two findings warrant attention. First, most groups do not perceive themselves as primarily activist organizations, although they are clearly political and politicized. Several groups express tensions with, and instances of making demands on, municipal governments – they challenge their social and political systems at the very ‘local’ level. In addition, many members are activists involved in other social movement organizations such as TAC and Durban’s Abahlali (shack dwellers) movement. Members appear to have many

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identities (e.g., ‘care-giver’, ‘organizer’, ‘activist’, etc.), which they draw on differently in different contexts. Second, all of the groups have had some contact with other groups (at times in the form of competition over resources), some funding, or some support from umbrella organizations. Indeed, almost all of the initiatives have accessed some form of ‘training’ from government (national, provincial, district, municipal) or non-government bodies, where economic sustainability (i.e., that the groups should aim to generate funds to be self-sustaining) has reportedly been emphasized. Who? We need men because it is not only women who are sick, and men need men to take care of them . . . women are trying to protect their children. . . . Women are the ones who feel responsible. (Founding member, Kennedy Road Drop-in Centre) We have seen in previous research that both activist and ‘survivalist’ activities tend to be carried out predominantly by women. This was reinforced in this study: several groups estimated that over 90 per cent of those publicly involved in AIDS activities are women, although until specifically asked about the gender dynamic of their groups, the fact that women are the mobilizing forces tended to be unrecognized. The most commonly cited profile of community mobilizer was the older, poor, unemployed, ‘African’ (black) woman in the townships or informal settlements. This was, however, not exclusively the case. The research revealed men increasingly involved and suggested that men who do get involved are powerful mobilizers, often in ‘management’ roles and more visible positions. It became clear that some young men are finding meaning in caretaking work. The research also demonstrated mobilizations among youth, the affluent, people who are well educated, people who quit their jobs to join these groups, and retired nurses and politicians. This further supports that some groups are political, although perhaps not overtly so. Moreover, in challenging ‘local’ social systems, many groups are generating behavioural and social change, such as breaking gender and generational divides by drawing young men and older women into caretaking roles. Why? I’m not going to die soon. I am going to be at my kids’ graduation and marriage. I am going to know my grandkids . . . Getting involved was about more than a job. I wanted to know a lot of things and I wanted to get information and support. I was working in security in the night shift, but thinking about this thing all the time. I resigned and did the training . . . I am not doing this so that people will say ‘thank you’. I’m giving the help I didn’t get. (Mentor, Mothers-2-Mothers Programme)

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A number of reasons were cited as to why groups organize and what motivates people to join. Most participants are driven by a myriad of complex factors: being personally affected (being HIV positive, experiencing a bout of acute or near-death illness, having a family member who is living with HIV, or suffering with personal loss); out of caring for the community; as a livelihood strategy (or hope of future funding or employment); for education and training opportunities; for information and support; for religious reasons or out of a sense of shared destiny; out of feelings of duty or responsibility; and to resist discrimination. Many participants expressed the formation of collective identities within their groups, both around ‘being positive’ and around counteracting the psychosocial impacts of unemployment. Indeed, these groups are providing opportunities for people to play organizational and caring roles in their communities, boosting their self-esteem, giving them a sense of purpose, and allowing them to ‘feel employed’ and ‘not sit around’. Motivations underpinning community mobilizations may be differentiated by gender. For women, child welfare appears to be a key mobilizing issue; women speak of caring for orphans, feeding children, preventing young girls from ‘selling their bodies’, providing educational and training opportunities for future generations, and so on. For men, mobilization appears to be driven more by a quest for purpose, employment, dignity and identity (the need to ‘feel employed’). This emerging differentiation, however, is not absolute and these motivations are not mutually exclusive. Furthermore, in asking ‘why?’, it is also useful to ask ‘why not?’, which raises the question of why so few men are involved in these activities (for a discussion, see Chapter 10, and on the case of Uganda, Chapter 8). The Cape Town and Newcastle focus groups hinted at a number of potential reasons, relating to social norms and the expression of masculine identities: fewer men know their HIV status because they are not routinely tested (women are tested when they are pregnant and thus referred to community projects); many men do not want to be associated with these initiatives in case they are perceived as HIV-positive; there is additional stigma for men to be involved because the groups are viewed as women’s activities; men are expected to be strong and not need help; and working publicly with these groups could open men up to the compounded discrimination associated with being male, HIV positive, and unemployed.

How? The money is coming out of our pockets; people are taking it from their grants. These two women right here are taking the money from their child grants to pay for transport. (Secretary, Qaphelani Outreach) While understanding how groups organize requires further research, some overall trends emerged in this study. Many community initiatives are inspired

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and/or guided by one strong leader – a person with vision, charm, skills and/or authority. In addition, mobilization is often facilitated by linkages with clinics, hospitals and churches, which provide institutional support in various forms. Interviews with umbrella organizations also raised the question of whether groups are mobilizing from the top down (e.g. as a result of efforts by larger organizations like TAC and NAPWA) or from the bottom up (i.e., motivated from within the community without external prodding). The research with community initiatives suggested that both forms of mobilization are taking place simultaneously and interactively. The question of ‘how?’ also inevitably raises issues around barriers to mobilizing. Funding is clearly the most common struggle faced by the groups in this study. Many projects are using family members’ earnings or individuals’ social grants to fund community AIDS initiatives. Some are accessing external funding, either from international NGOs or foundations, or more commonly from the Departments of Health and/ or of Social Welfare; these groups highlight the strains on them to sustain resource flows and meet donors’ reporting requirements. Negotiating bureaucracies at local, provincial and national levels is a major barrier to mobilization.

Where? There appears to be an urban–rural divide in mobilizations. Cities, including townships, peri-urban areas, and shack settlements, appear as hotbeds of community organizing, whereas in rural areas mobilization is hindered by disproportionate stigma, minimal access to information, and lack of transportation. The research also indicated a differentiation in mobilization by place. Cape Town, as compared to Newcastle, for instance, appeared to be much more active in treatment and care initiatives. In Cape Town, ARV roll-out is reportedly making a difference and stigma is on the decline. Initiatives carrying out ‘the latest’ in AIDS response, such as ‘treatment literacy,’ are springing up. In Newcastle, there appears to be much less access to resources and perception of political opportunity; stigma is still viewed as a major issue; ARV roll-out is perceived as slow; and issues of food insecurity and unemployment are deemed more immediate concerns than HIV/ AIDS, and thus are more central to mobilizations. This differentiation may be due, in part, to a strong TAC presence in the Western Cape and to strong linkages between TAC and ANC members in the area. TAC is a well-resourced mobilizer – it exerts pressure on government, gains media attention, raises awareness, facilitates support groups, and runs training workshops. It has extensive networks not only into government, but throughout communities in the Western Cape. By contrast, Newcastle participants suggested that TAC is not operating anywhere in the Amajuba

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District; many had not heard of the organization. Whether these findings speak to a unique dimension of mobilizations in Cape Town or to a broader urban–rural divide was not entirely evident.

The conceptual terrain revisited: emerging themes and unanswered questions How, then, can we learn from these on-the-ground experiences, and from previous work, to extend our understanding of community HIV/AIDS mobilizations? The above discussion provides insights into a number of the central concepts that were introduced earlier in the chapter and which are under-theorized in AIDS research: ‘community’, ‘civil society’, ‘local’, and ‘mobilization’. I do not wish to dwell on semantics; however, it is important to consider the assumptions embedded within these concepts if we are to unravel complex AIDS responses and their effects. I will thus revisit each concept in an attempt to add nuance to how we conceptualize community AIDS mobilizations. As this is an exploratory chapter, I will also highlight emerging issues and lingering questions for future investigation. The notion of ‘community’ is often associated with ‘social capital’ (Campbell et al. 2002) and assumed to comprise positive, caring, ‘innocent’ and even protective social relations. Yet this research has shown that communities are not free from power relations and hierarchies; community initiatives can and do engage in struggles with other projects. There is a need to understand the complex power dynamics within communities, both among group members and more broadly, when allocating recognition and resources. We see also that ‘community’ is not static or homogeneous. It is a process of developing social relations and, in some cases, collective or shared identities. The mobilizations in this study are community-generating processes, but not in any simple or neat way. For example, while groups are beginning to generate new spaces where historical gender roles blur, this is not happening quickly or uniformly; processes of involving men have been slow and uneven. Moreover, men who join tend to be in ‘management’ positions, reinforcing the need to continuously examine how power relations operate within various ‘community’ organizations. The concept of ‘civil society’ generally refers to those aspects of society between state, family and market. However, we have seen that civil society and state are not always distinct in South Africa, as many civil society organizations affiliated with the anti-apartheid struggle were absorbed into the state apparatus when the ANC came to power (for a discussion of a similar tendency in Brazil, see Chapter 14; and for a general discussion, Chapter 16). Emerging community organizations – clearly ‘civil society’ – are carrying out development activities that might otherwise have been the responsibility of the state. They are often dependent on the state for funding (and thus for

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survival). This, together with a lingering culture of solidarity for the liberation struggle, may leave some groups in positions where they feel unable to question or oppose their government.6 The blur between state and civil society has implications for how citizens perceive what is just and their own roles, duties, rights, entitlements and capacities to affect change. The majority of mobilizations in South Africa are ‘survivalist’ – assumed to be taken up with the business of surviving, not making explicit demands on the state, and thus not considered to be social movement organizations. Yet, this could change as political cultures continue to transform, perhaps fuelled by rising sentiments of ‘broken promises’ (as expressed by some participants), increasing AIDS burdens, and development of new inter-community and transnational networks. It is often assumed that community mobilizations are limited in their capacities to affect societal change because they are small in scale and ‘local’ (i.e., largely unconnected from other networks and having little effect outside the place of operation). Much emphasis is placed on ‘scaling up’ and reproducing these initiatives. This research, however, depicts a more complex reality, with two key points for future research. First, the power of these groups may lie in their capacities to holistically address specific localized needs. The eight profiled groups reveal how ‘survivalist’ mobilizations not only fill crucial roles in response to HIV/AIDS, but also address a myriad of other pressing societal issues. They are windows into the intersections between HIV/AIDS, food insecurity and unemployment in South Africa, and their outcomes are often intangible – providing hope for the future and a sense of purpose. These mobilizations are addressing HIV/AIDS comprehensively, targeting underlying vulnerabilities. And vulnerabilities are not uniform: this study shows different groups and regions facing different issues, different epidemics, different levels of stigma, different political opportunities, and thus different mobilizations. This raises the questions: Is it necessary or even advantageous to focus on scaling up or transplanting these projects? Should we instead seek to provide direct support to community initiatives in order for them to continue operating in localized ways? Second, despite assumptions around ‘localness’, the projects in this study are not isolated initiatives: they have all had (varying degrees) of influence from other near-by and/ or far-away groups, external funders, training programmes, or umbrella organizations. They all possess similar organizational structures, which are formal and sophisticated, and similar discourses span community projects throughout the country, from rural Amajuba to the bustle of Khayelitsha. Although spread across the country, participants spoke remarkably similar ‘languages’ – referring repeatedly to ‘services’, ‘clients’, ‘executives’, ‘plenaries’, and so on. Clearly, these activities are hybrids of global and local conditions; responding to localized needs but influenced by globalized discourses and external actors.7 Yet, the extent to which ‘local’

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groups can and do draw on their ‘globalness’ to affect change, and what the consequence would be of facilitating solidarity networks among existing groups (alongside efforts to ‘scale up’), is not known. Thus, it would be worthwhile examining whether and how members of ‘survivalist’ projects are linking with community mobilizers elsewhere, and whether such linking is a facet of trying to ‘learn’ from one another (in the sense of improving the efficiency and efficacy of home-based care, treatment literacy, and so on), or whether there are also dimensions of contentious politics, solidarity, or demands-making.8 Understanding ‘survivalist’ networking could be aided by a growing literature on ‘globalization from below’ (e.g., Appadurai 2000), which has been employed in the context of TAC and could lend insights into AIDS mobilizations more broadly. The concept of ‘mobilisation’ itself also warrants development. We have seen that ‘survivalist’ initiatives tend to be framed as largely apolitical, with ‘activist’ and ‘survivalist’ mobilizations conceptualized as two distinct realms of collective response. In this study, however, most participants did not perceive their efforts as apolitical. Some expressed solidarity with activist organizations and there were clear overlaps between leaders and members involved in the two ‘types’ of initiatives. In many cases, project members attend demonstrations, sign petitions and so on. Moreover, while sentiments toward national government varied between participants, there were obvious tensions with, and demands being made on, municipal governments. Many members are, furthermore, driven by a resistance against discrimination and exclusion from their ‘communities’. They are articulating the multifaceted challenges they face in their daily lives and countering the isolation of living with HIV or caring for someone with the virus; they are generating behavioural, ideational and social change. There were also clearly ‘politics’ at play within and between the groups – competition over resources, positions and roles, and gender politics. ‘Survivalist’ groups are, evidently, inherently political and politicized: they are challenging social systems at the very ‘local’ level. It would thus be worth asking whether community mobilization could become a means of expanding citizens’ voices, as has been probed in relation to TAC. By contrast, it is also important to ask whether and how social mobilization is ‘empowering’ and to consider potential downfalls – for example, that AIDS mobilization within South Africa could be concentrating social burdens on marginalized groups. It bears reiterating that some participants are using pensions and child grants to fund community projects. Indeed, social ‘responsibility’ was a repeated theme among group members. There emerges a tension around whose responsibility it is to care for the sick and affected – a simultaneous belief among some that government, especially local government, is not doing enough to respond to AIDS, alongside feelings of duty, altruism and compassion. Neoliberal philosophies appear to be reinforced by emphasis on ‘income generation’,

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placing the onus on community projects to be economically self-sustaining. It would thus be useful to investigate in more depth the training offered to community initiatives, the discourses and assumptions embedded within these workshops, and the conditions and incentives attached to accessing funding. We must also consider how the depoliticizing of ‘survivalist’ projects intersects with gender and age dynamics. We have seen that mobilization is taking place predominantly among older women; from this preliminary study, it appears that the feminization of community response is reproducing gender inequalities. The uncritical acceptance by many that women are the ones who are (and perhaps should be) responding to AIDS within communities seems to be perpetuating a belief that women are the ‘natural’ care-givers, compounding expectations on women to do unpaid and invisible work. Yet, we have seen the constraints on men engaging in community organizing, with differentiated stigmas and norms for men and women. Men who do mobilize are dedicated and powerful leaders who work extremely hard and find purpose in these activities. More study is needed to deconstruct the social norms and gender dynamics around community mobilizations, as well as to understand whether and how these are changing. A number of questions remain unanswered. What assumptions underpin the depoliticization of AIDS initiatives, and who or what actually ‘does’ the depoliticizing? If it were not women, especially older, poor women, mobilizing, would citizens be encouraged to work long hours, in difficult conditions, with no salaries? Would there be more recognition of the public roles played by these initiatives and the politics that extend beyond the domestic sphere? What roles and responsibilities should women, men, communities and governments be playing? In summary, the findings of this research add theoretical nuance to notions of community, civil society, localness and mobilization, as they apply to HIV/ AIDS research. A number of key points emerge: ‘survivalism’ and social activism appear to be overlapping forms of mobilization, not discrete activities; the extent to which groups can make political demands and affect societal change depends on their perceptions and levels of political voice, broader state–civil society relationships, and the political economy of AIDS training and funding; community initiatives play vital roles in addressing the multi-dimensional stresses people face, but they can be divisive and laden with uneven power relations; and while clearly addressing localized needs, many community initiatives draw on localized and globalized discourses and link with broad networks. The concept of social mobilization needs to be approached critically, as emphasis on community response may be reinforcing inequalities and perpetuating a sense of duty among poor women to quietly bear the burdens of AIDS. Indeed, gender analysis will be a crucial dimension of future research in this area. Moreover, the dichotomies and categories currently at play within research on community AIDS mobilizations

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require further examination; they may not adequately reflect the complex realities of those at the centre of these initiatives.

Conclusions and directions for future research Aside from analyses of AIDS activism and specifically TAC, social mobilization around HIV/AIDS at the community level has been both under-studied and under-theorized. There has been limited academic research on how ‘survivalist’ groups are forming in response to South Africa’s epidemic and what effect these groups are having. This chapter has provided a conceptual exploration of ‘survivalist’ mobilizations drawing on preliminary field research. The evolving study is likely to include in-depth ethnographies with a few selected community initiatives, taking the initiatives as entry points to gain a better understanding of the dynamics and effects of these projects. The focus is likely to be, at least in part, on older women and grandmothers, as they are key community organizers, investigating the intersections between their collective responses to the unfolding epidemic, food insecurity and unemployment. This will require extensive participant observation and interviews with multiple group members, people accessing the projects, and community members more broadly. It will also require more detailed examination of the training offered to the community projects, the gender and age dynamics within the groups and communities, and the funding and support structures upon which the groups draw. On a theoretical level, social movement theories have lent insights into why and how community groups are organizing. A number of emerging issues and questions, however, fall outside of this literature. For example, social movement research does not necessarily shed light on the everyday practices and politics of community response; the deep spirituality apparently associated with mobilization and ‘living positively’; the political economy of mobilizations, funding structures and training discourses; or the possibility of AIDS mobilizations as alternative forms of globalization, solidarity building and resistance. Future research could benefit from engagement with critiques of ‘community’ and ‘participatory’ development, the growing literature on ‘globalization from below’, theories of resistance, theological concepts (e.g., liberation theology theories), psychosocial analysis, and recent writings on governance and governmentality. Community-level mobilization is dynamic, changing with the changing epidemic, and it is likely to escalate as impacts unfold. The phenomena of citizens, especially poor, often older female, citizens, coming together to prevent HIV, care for the sick, create income generation strategies, lobby for funding and support, and access treatment can shed light on South Africa’s broader reconfiguration of state, civil society and international actors. These activities can also provide important windows into the multi-dimensional stresses faced by many vulnerable and affected groups, and the types of social

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change and societal support they desire. These seemingly small ‘projects’ have much wider implications. This chapter has repeatedly conveyed the need to question whether and how community AIDS projects are ‘survivalist’, and whether the assumptions embedded in such a framing are accurate. One could not discount that highly affected South African communities are taken up with the business of surviving, but human motivations are more complicated still. We have seen that mobilizers are driven by necessity and duty, but also by their quests for purpose and belonging. Furthermore, ‘survivalist’ initiatives are clearly not apolitical. Who mobilizes, how, and why, are social justice issues that cannot be ignored in resource poor settings. We need to continuously ask where the burdens are falling and why, and what underlying ideologies and structures are fuelling the type of mobilizations we are seeing. We need to acknowledge that groups are surviving amid and despite complex webs of politics: politics that download responsibility to the poor, politics within and between organizations, gender politics, municipal politics, and so on. We also need to recognize that these groups are generating their own politics – systems of distributing human and material resources, networks and hierarchies of power, and new social relations, communities and norms. Understanding the crucial and complex AIDS-related work undertaken within communities is a necessary first step to addressing South Africa’s unprecedented epidemic. There are opportunities to learn from the amazingly creative collective responses of people within vulnerable communities. Such learning could provide new avenues for governmental, non-governmental and international actors to support those most affected by AIDS in ways that neither compound their burdens nor undermine their expertise.

Notes * The fieldwork for this chapter was conducted with assistance from S’bo Radebe and Maanda Nelufule from HEARD. I would also like to thank all those who participated in this preliminary study, especially the members of the eight community projects: Mothers-2-Mothers (Khayelitsha), Malibongwe Women’s Development (Cape Town), Qaphelani Community Outreach (Osizweni), Sihlangene Support Group (Newcastle), Buhlebuzile Group (Vosloorus), Vosloorus Home Care Services (Vosloorus), Kennedy Road Drop-in Centre (Durban), and Hillcrest AIDS Centre Trust (Hillcrest). 1. This term tends to be used interchangeably with ‘grassroots’, ‘community’, and ‘civil society’ responses in the AIDS field although these concepts have not been fully developed in this literature. 2. This chapter draws on preliminary fieldwork carried out in 2006 in and around Durban, Cape Town, Newcastle and Johannesburg, including: interviews with

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5.

6. 7. 8.

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members of eight community-based initiatives (eight preliminary case studies); interviews and/or focus groups with umbrella organizations (non-government or government bodies that support community initiatives); interviews and/or focus groups with key academics, researchers and activists; and gathering, collecting and appraising relevant literature, both published and unpublished. This is not to claim a complete merging of state and civil society, but rather a notable overlap in the immediate post-1994 political environment. As stated earlier, this is not suggesting that gender is not on the agenda at TAC or among other groups. Indeed, TAC has recently appointed a female leader in its national office, and there are clearly members on board to address gender–AIDSrelated issues. The concern is that gender politics in AIDS mobilizations have not been adequately examined by analysts and scholars. Indeed, some are calling for a ‘basic income grant’ as one way of mitigating AIDS impacts, and a disability grant has recently been established for those in the later stages of HIV. Although with the continued politicization of AIDS, this dynamic may be changing. As has been noted with the localized–globalized hybridity of TAC. In this regard, one pertinent example is the Canadian Stephen Lewis Foundation’s Grandmothers-to-Grandmothers Initiative, which is facilitating mobilization of Canadian grandmothers in solidarity with AIDS-affected grandmothers in community projects in parts of Africa.

References Alexander, A. (2006), Personal communication, Durban, 08 May. Appadurai, A. (2000), ‘Grassroots globalization and the research imagination’. Public Culture 12(1): 1–19. Ballard, R., Habib, A. and Valodia, I. (eds) (2006), Voices of Protest: Social Movements in Post-Apartheid South Africa. South Africa: University of KwaZulu-Natal Press. Ballard, R., Habib, A., Valodia, I. and Zuern, E. (2005), ‘Globalization, marginalization and contemporary social movements in South Africa’. African Affairs 104/417: 615–34. Birdsall, K. and Kelly, K. (2005), Community Responses to HIV/AIDS in South Africa: Findings from a Multi-community Study. Centre for AIDS Development, Research and Evaluation (CADRE). Campbell, C., Williams, B., and Gilgen, D. (2002), ‘Is social capital a useful conceptual tool for exploring community level influences on HIV infection? An exploratory case study from South Africa’. AIDS Care 14(1): 41–54. Chazan, M. (2006), Full Report Working Paper: Understanding Community Mobilization around HIV/AIDS in South Africa. Health Economics an HIV/AIDS Research Division (HEARD): www.heard.org.za. Cohen, C. (1999), The Boundaries of Blackness: AIDS and the Breakdown of Black Politics. Chicago: University of Chicago Press. Della Porta, D. and Diani, M. (1999), Social Movements: An Introduction. Oxford: Blackwell. Dlamini, L. (2006), Personal communication, Durban, 09 May. Fowler, A. (2004), Civil Society Capacity Building and the HIV/AIDS Pandemic. Netherlands, PSO Seminar Paper. Friedman (2006), Personal communication, Johannesburg, 23 May.

222 The Politics of AIDS Friedman, S. and Mottiar, S. (2004), A Moral Tale to Tell: The Treatment Action Campaign and the Politics of HIV/AIDS. Durban: Centre for Policy Studies, University of KwaZuluNatal. Gumede, W.M. (2005), Thabo Mbeki and the Battle for the Soul of the ANC. Cape Town: Zebra Press. Habib, A. (2003), ‘State–civil society relations in post-apartheid South Africa’. In Daniel, J., Habib, A. and Southall, R. State of the Nation: South Africa 2003–2004. Cape Town: Human Sciences Research Council. Klandermans, B. (1997), The Social Psychology of Collective Protest. Oxford: Blackwell. Kumba, B. (2000), Gender and Social Movements. Minneapolis : University of Minnesota Press. Marais, H. (2005), Buckling:The Impact of AIDS in South Africa. Pretoria: Centre for the Study of AIDS, University of Pretoria. McCarthy, J. and Zald, M. (1979), ‘Resource mobilization theory and social movements: A partial theory. American Journal of Sociology 82(6). Pithouse, R. (2006), Personal communication, Durban, 22 May. Robins, S. (2004), ‘ “Long live Zackie, long live”: AIDS activism, science and citizenship after apartheid’. Journal of Southern African Studies 30(3): 651–72. Robins, S. (2006a), Personal communication, Cape Town, 12 May. Robins, S. (2006b), ‘From “rights” to “ritual”: AIDS activism in South Africa’. American Anthropologist 108(2): 312–23. TAC (2006), Treatment Action Campaign, South Africa, Internet Source: www.tac.org.za. Tarrow, S. (1998), Power in Movement: Social Movements and Contentious Politics. Cambridge: Cambridge University Press. Teljeur, E. (2002), ‘Response of non-governmental organizations, community-based organizations and communities’. In: Kelly, K., Parker, W. and Gelb, S. (eds) HIV/AIDS, Economics and Governance in South Africa: Key Issues in Understanding Response. Johannesburg, CADRE/USAID.

Part 4 Responses from Civil Society: Latin America and Asia

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13 From Global to Local and Back to Global: The Articulation of Politics, Knowledge and Assistance in Brazilian Responses to AIDS Cristiana Bastos

Introduction1 Brazil is regarded worldwide as an example of a successful and articulated response to the AIDS epidemic. Investing in prevention and assistance, civil society and government are engaged together in efforts towards reducing the number of new infections and the death rate. In the year 2000 the number of people infected with HIV in Brazil was estimated at 600 000 – about a half the 1 200 000 earlier projected by the World Bank for the country.2 The number of people receiving antiretroviral therapies keeps increasing; by September 2005 about 170 000 people were receiving treatment, with an overall 75 per cent adherence.3 Brazilian expertise on AIDS is now exported to different world settings, including Asia, Africa, Eastern Europe. What are the reasons behind this apparent success? Recent discussions have emphasized two major factors: the power of an organized civil society (see also Chapter 14) and the ability to produce and distribute antivirals in the public system. That ability counted on several elements: political will to provide medicines free of charge within the public system, technical ability to produce the medicines in national laboratories, political ability to subvert the rules imposed by big pharmaceutical companies and trade organizations regarding patented formulae, and creativity to replicate the formulae via reverse engineering. This model is accurate, yet oversimplified; attempts to export it to other situations may lead to the reification of its components, to artificial investment in single factors and to predictable failure. While there is general enthusiasm over Brazil’s experience, AIDS scholars have critically analysed some of the problems involved with the possibility of replicating it elsewhere (Berkman et al. 2005). In this chapter I will contribute to the discussion by historicizing the organized response to AIDS in Brazil. I will show how the articulation of local 225

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action and global flows in funding and expertise created a unique situation, one that shaped the actual local responses and turned the conflicting and scattered scenario of 1980s Brazil into the joint platform of action that, from the mid-1990s on, allowed for the development of an exemplary national AIDS programme.

Short retrospective of a change Things have changed since the time I first approached Brazil’s responses to AIDS in the early 1990s.4 Many of the activists, physicians, public health specialists, epidemiologists and social scientists that I met back then, struggling with difficulties and inventing creative responses to overcome an anxious present and a jeopardized future, ten years later became successful consultants for a variety of countries in Africa, Asia, Eastern Europe, and international agencies. From just another response to a global crisis, Brazil became a global exporter of response expertise. Time and again, in international meetings, we can find delegates from different places asking Brazilian delegates for guidelines. Particularly since 2001, Brazil has been regarded by policy makers, AIDS activists, physicians around the world and the leading health organizations as the best example of a successful response to AIDS.5 Not fully a part of the inner circle of developed countries, Brazil appears as proof that there are ways of curbing the epidemic, proving wrong the grim predictions hanging over the developing countries. India and China, aware of dire predictions regarding the expansion of AIDS in their population, and often depicted as potential ‘new Africas’ in terms of future infections rates, have people who work on the possibility of learning, borrowing or importing expertise from the Brazilian experience. What can explain this shift in Brazil’s position in the global context of responses to AIDS?

World fractures, before and after the ‘cocktail’ Ever since the announcement, back in 1996 at the International Conference on AIDS held in Vancouver, Canada, of the effective anti-HIV treatments, the world tends to split between those who are able to reach, purchase, and use those treatments, making AIDS a somehow manageable disease, in spite of its costs, and those who, unable to pay for the new treatments, will remain under the collective and individual stresses of the devastating epidemic. This fracture is well known in world health patterns; it resonates the split between the ‘developed’ and the ‘developing’ or, as it is more popularly used in Brazil, between ‘first’ and ‘third world’, or still, in some political lingo, the ‘North’ and the ‘South’. Hardly anyone takes literally the geographical references of this partition, as it is a matter of economics and politics rather than of space. And yet the distinction remains stable and convenient, sometimes

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overlapping with geography, sometimes referring to exceptions to that tendency, such as the ‘first world within’ the developing countries and the ‘third world within’ the developed nations. During its first decade, the AIDS epidemic short-circuited that partition. AIDS potentially affected everyone, whether or not they had the means to pay for treatment; treatments were just not there.6 Nor was there enough accumulated knowledge that could be readily capitalized into the development of new drugs, even if there had been enough attention and funding. For a few years AIDS remained a leveller that killed rich and poor, left and right. For those who had been surrounded by preventable yet prevailing endemic diseases like malaria, tuberculosis, malaria, pneumonias and gastro-intestinal disorders, AIDS came as another disruption and another terrible disease in a too well-known scenario, unbeatable by treatments that were unaffordable to begin with. But for those who were living in sanitized environments, using informed behaviour to avoid ailments, doing their best and paying their most to keep illness at bay, a new incurable disease appeared as a galvanizing shock. It was first compared to cancer (the ‘gay cancer’) in its unpredictability and means to defeat modern medicine. But when AIDS became known as an infectious disease, indignation arose even more among those not used to that sort of vulnerability. How could a ‘mere’ infection, in spite of its complexities, not be handled by modern medicine? Was it the politicians that prevented it selectively, as many in the US thought for a while? Was it homophobia? Racism? Fear of different lifestyles? Neglect for the populations at risk? A first wave of activism developed to supply what seemed to be missing: by fund and awareness raising, it tried to promote public acknowledgement, intense research, rapid solutions, treatments and drugs – a cure. The rationale was, with more money and less red tape, more awareness and less denial, a cure should come faster out of the medical research labs. Things turned out to be slower and more complex. It took years, and many lives, before anything palpable made a real difference in treatment. Yet, something else ‘less palpable’ developed within that context. The activism that grew at the time created a new sort of social movement with a major influence in global health politics. It is interesting to note that while most of the world reacted to AIDS with assorted forms of denial, with a ‘not us’, ‘not here’, and ‘no such thing exists’, as it lingered for too long in some places,7 it was a niche of parochially oriented politics within the gay communities in the richer cities of the western world8 that developed a sort of awareness and activism that ended influencing global politics. In the second half of the 1980s some of the energy of the early AIDS activism had affected global agencies like the WHO and a few major donor NGOs. It was a time when activism moved faster than biomedical research. There were still no appropriate medicines available, but there were intense developments in prevention, awareness, and stigma-reduction. There was

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global action, transnational efforts, cooperation, new sorts of connections, bridge-building; humbleness and empathy went hand in hand with creative anger and radical movements. For many, it was an entirely new world of awareness, emotions and politics. At moments, it seemed as though all health politics on earth were going to change. Talk of empowerment, gender, sex, oppression, prevention, commerce and education, became as familiar in AIDS conferences as reports of clinical trials and laboratory research were. What public health specialists around the world had been preaching for decades – bring the social into the medical, or, health is politics – was now nearly commonsense in the AIDS front. In 1996, after years of trial, fighting, and error, too late for many, right on time for many others, the news of an efficient therapy finally broke out. On time for many, but, in fact, only for some; precisely for those who had most expressed their indignation with the fact that their lives had been under threat due to the lack of medical knowledge on how to handle this infection. For that fraction of humankind, after 1996, things seemed on their way to be under control; that was the fraction that was more familiar with, and could afford to access, the powers of medical knowledge. For most others, whether thought of as in the wrong side of the world, of power, and of economics, things remained, as usual, out of reach. As it happened for parasitic infections and for lung bacterial infections, there might well be an efficient treatment somewhere, but not right there, not in one’s reach. Coughing, wasting, burning with fever, what was there radically new with AIDS that might not be known before? At this point, the question is whether the pattern of a dual health system in a fractured world re-emerged with the announcement and use of effective AIDS treatments after 1996. Evidence supports a yes, but only partially so. The lack of knowledge and means to treat AIDS, previously shared by rich and poor alike, was replaced by scarce commodities and valuable knowledge. None of them being free, available at a high cost, they re-introduced the differentiation that had been temporarily suspended. The frenzy moments experienced at International AIDS Conferences, with all different world representatives together working towards a common goal, gave place to the routine of a world with commodities and prices, a world whose citizens are consumers and the non-consumers are excluded. There must be an emphasis on the exorbitant price consumers are paying for their product, which can amount to tens of thousands of dollar per person annually. It is not just the prime matter and the manufacturing process that they are paying for, it is the embedded cost of privately owned knowledge. Pharmaceutical companies’ royalties include the costs of research, showing how a pill is also the sum of an endless chain of operations, cognitive, legal, chemical, intellectual, manual. And yet things did not go back to where they were before the global efforts to fight AIDS that arose in the late 1980s and early 1990s. There were

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undeletable marks everywhere: the global consciousness about the pandemic, the engagement of multiple sectors of the society, and the need to use complex, multilayered models of understanding, where the social dimensions are a mandatory element within the main frame. And that is when, where, and why, Brazil comes to play a particular and highly visible role.

Escaping predicaments in Brazil While the grim predictions about the course of the epidemic remained at the front, with relief for the few who could pay the costs of treatment and delayed hope for the many who could not, unexpected good news came from Brazil. Curbing the epidemic, alleviating collective stresses and making treatments available for those who need it, Brazil came as the much quoted example. How did this happen? This is the question that people from everywhere put to those who have been involved with, or close to, Brazilian AIDS politics. In academic circles in the United States I would witness directly that kind of interest about AIDS in Brazil. In one event at a major university, delegates from India and China asked for Brazil’s inspiration in order to model their own countries’ responses to AIDS.9 Brazil was represented by no ordinary delegate, but by the very President who had been in office when the crucial decisions were made, Fernando Henrique Cardoso, together with his wife, anthropologist Ruth Cardoso, involved with AIDS-related programmes during her time in Brasília. When asked about the reasons for Brazil’s apparent success, President Cardoso tried not to single out the role of his office, acknowledging that his successor President Lula da Silva followed the same policies. Rather than the former president, it was as a sociologist that he provided an answer emphasizing the fact that Brazil had a strong civil society. That was, in his words, the crucial factor behind the success of an original policy. That policy included medication policies, attitudes towards patent rights and policies of knowledge, international negotiations with the World Trade Organization, and a high public investment in health. The answer was not about the efficiency of medicines, nor a display of figures and tables illustrating success rates. Neither was it one of epidemiological graphics, or a speech about individual agency, singling out heroic actions or political decisions. Nor was it a chronological list of key events. He offered instead a synthetic and valid sociological explanation. But, as other explanations, it has its limitations. In the following sections I will discuss some of its difficulties and suggest how we might introduce some complexity into the explanation. It is true that Brazil has a very strong movement and motivated AIDS constituency, or, in other words, a strong and organized ‘civil society’. That accounts for people directly affected by AIDS either by being sick, infected,

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vulnerable, by feeling powerless to cure or to distribute means for treatment. It includes people who were widowed, orphaned, in loss, anger, solidarity, or simply touched by the general impact of a major epidemic. That movement’s main component corresponds to the AIDS NGOs that developed in the country, particularly, but not exclusively, in the cities of São Paulo and Rio de Janeiro. But this movement had not been there forever, nor even for too long. In the late 1980s and early 1990s, when Brazil was not yet a positive example for international AIDS news but was rather seen as a source of preoccupation for international agencies as a site where the epidemic might grow rapidly, local ‘civil society’ as we know it today was still in the making. The nation had just re-emerged from a dictatorship that would not support civil rights. In many senses, the social movement originated in the struggle against the dictatorship, benefiting from a wider international support for humanitarian causes, development and civil rights. Community associations were influenced by different streams, including the sectors of the Catholic church and international funding for development (e.g. Ford Foundation) and towards the reduction of social affliction (e.g. Norwegian Red Cross). As some analysts have shown, the very word ‘Non-Governmental Organization’ (NGO) arose from northern funding and support to the fight against authoritarian regimes in Latin America (Landim 1988). One of the reasons evoked was that there was no strong civil society in Brazil and that it needed to be strengthened as a means to overcome under-development. Apparently, the funding of local NGOs by development agencies had a rapid positive outcome. At the outburst of the AIDS epidemic, there was enough strength among the Brazilian NGO sector to grow rapidly and intervene; AIDS was one major catalyst of the sector. On top of that, the AIDS movement recruited a sort of radical energy that transcended the fight for individual rights as practised in the US. In a sense, the AIDS movement in Brazil was more universal oriented than its US counterpart. While New York AIDS activists fought for immediate results and requested action from their representatives via letters and faxes, Brazilian activists set out for wider goals and took on more radical stances, while having shorter expectations of immediate influence. They acted against an inherited authoritarian state that for decades had done nothing for the population but repress it. In the beginning, the government was, by definition, the enemy. Only much later did that sort of energy affect the government as well.

AIDS, knowledge and politics In my first approach to the Brazilian experience my interest focused on the production and use of medical knowledge. I aimed at understanding the role of Brazil in the global processes of knowledge making in a world of fractures and inequities.

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In the early years of the epidemic in the US the blatant scarcity of knowledge made every little bit and piece of information matter. Whether this referred to a detail of the HIV genome, a folk drug reported to work, a tonic, coming out of a mainstream laboratory or from the new age repertoire, from spontaneous clinical trials with existing drugs or from exotic traditions of old Chinese medicine or African healers, all knowledge was important and circulated rapidly. For those whose lives were at stake – a large number in New York city alone – every bit of new knowledge was crucial, anything counted, and anything took easily a life of its own, beyond the plot of research it was embedded in. One could talk on the streets about the most sophisticated details of high-tech genetic research and on the lab benches one could be found talking about the wildest ideas about cannibalism, orgies and blood rituals as the origin of AIDS. Bits and pieces circulated with meanings attached and invested. My interest covered the entire variety of knowledge flows, which included scientific knowledge, clinical knowledge, practical knowledge, organizing knowledge, activism, ways of coping, and many other sorts of knowledge. While I tried to keep up with them all, as they affected one another, I had a main interest in the dynamics of production of hard-core biomedical knowledge. Biomedical research was a piece among a wider variety of circulating knowledge – yet not just another piece like any other, but one around which many others evolved and shaped. HIV had recently been named and described as a new entity. It was not uncontested. The field allowed for dissention and variety. This should not be surprising to anyone familiar with the history of medical knowledge, as consensus is never achieved rapidly. The history of other infectious diseases has shown that it may take a long time before scientists agree on what should be taken as etiology, modes of transmission, not to speak of consensus about treatment, prevention or public health measures. But while this is familiar to historians and students of science, it appeared disturbingly confusing in the context of the exposure of the process of production of knowledge about AIDS. The sense of emergency surrounding AIDS exposed the slow road to consensus achievement. Rarely, if ever, was there so much direct scrutiny over what was going on in science labs. Besides being visible, what else was new regarding the process of producing knowledge, or consensus achieving, in the field of AIDS? One thing stood out: that the constituencies, or at least its more vocal segment, the politicized gay groups in North American cities, directly influenced research. At a first stage, constituencies asked for research to be done, to be done fast, and to be done efficiently. They helped scientists by raising funds and providing volunteers for trials. At a second stage, the growth of treatment activism created a sophisticated form of influence; activists studied and mapped the field in order to signal specific lines of research that were uncovered, or some that were wasting time by repeating others. They formulated new questions. They provided their own body tissues and cells for research, participated in

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clinical trials, and suggested creative venues of exploring the immune system, immune reactions, AIDS related infections, HIV infection, HIV itself, HIV specific treatments, or treatments directed to some components of HIV. This happened particularly in the early 1990s, and some of the antiretrovirals that would later become part of the consensus therapy, announced in 1996, were part of those discussions. Compared to epidemics of the past, things were indeed fast; and yet they were too slow for the urgency of the many that had their lives on hold. There were attempts to document and theorize this interaction, along the lines of what had been done a decade earlier regarding the impact of women’s movement on health. It was about the constituency influencing the production of knowledge at instances, of politics helping define some of the choices that are made in the process of research and the making of new knowledge, as Steve Epstein so thoroughly analysed (1996). But the question was not just about empowered constituencies who could fight for their rights and had almost immediate impact on the AIDS research policies followed in the US and northern Europe. AIDS affected the entire world and, for moments at least, it appeared that global action was promoted: the WHO, followed by the creation of UNAIDS and the joint efforts of international agencies, national governments and private foundations, promoted a sort of action that involved the entire world at once. Or so it seemed. What would that mean in terms of knowledge production and circulation? What would be the role of those who had always been familiar to infectious diseases, to epidemics, to the complex presence of social dimensions at the very forefront of health, suffering and health care? Or, in other words, what was the role of the developing world in the production of an understanding of the global epidemic? How could we describe it along the lines of an understanding of how knowledge is made, consensus is achieved, adopted, imported, exported? Would there be dissent, as later happened with some African leaders, or, instead, unrestrained acceptance, or a promoted critical discussion in what mattered the most? The mainly gay AIDS constituencies in northern countries, as had happened with the women’s movement two decades before, were able to point out some of their needs and some of the lines along which research should be promoted. Would the Third World countries be able to make the case for the need to develop low cost treatments, effective prevention models, potential synergies with prevalent diseases, infectious co-factors, specific pathologies, and bring their own experience with infectious disease into the mainstream research? One thing seemed obvious to me: that Third World scientists were far more acquainted with infectious diseases than their US peers. While ‘tropical medicine’ had nearly disappeared in the ‘North’ by the eve of AIDS, it was alive and flourishing in southern countries. How would that shape into

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the possibility of producing a meaningful input into the global knowledge about AIDS?

Brazil in the world system That hypothesis brought me to Brazil in 1990. AZT had just been out, but its effects were limited and its cost was high. There was no cure for AIDS. HIV’s genome was being worked. There was still much to learn. It was not yet clear to everyone what should be the leading way to develop adequate responses to the new epidemic and the many infections related to it. In a country that had always kept the scientific and medical specialty in infectious diseases (DIP – Doenças Infecciosas e Parasitárias), how did the new epidemic fit? What were its links to other infections, to prevailing poverty and its health correlates, to the fracture between rich and poor, the first and third world within? How would that be approached in the clinic, in the media, in the public policies? Was the accumulated knowledge regarding infectious diseases of any use, or did AIDS appear as something entirely different? Would there be any connection between the previous work and research by local scientists, clinicians, constituencies and the new demands of the AIDS epidemic? Would there be any impact of local developments in the global scenario? While conducting fieldwork, I could find plenty of potential contributions to flow from local to global, from South to North; some of them were defined at the core models for the understanding of immunological diseases. But in the daily life of working with AIDS, the needs of the clinic, the urgency of treating efficiently, and the specific requests to make a research idea into a viable research project, shrank Brazilian biomedical creativity into a timid position; physicians would rather follow what came out in the press than venture hypotheses based on clinical experience, and researchers were, at best, partners in international research projects, as I have discussed in detail elsewhere (Bastos 1999). At the time they placed themselves at the periphery of the science-making world, and they could not aim at providing the elements for a major shift in the global understanding of AIDS. Most of what turned into consensus was being framed elsewhere and imported. What they could do was to provide the best clinical assistance as long as there were the means for it; there were indeed a few exceptional settings where this happened. They could think and hope for affordable remedies but they could not create them and send them to the world. They could also engage in clinical trials or epidemiological research. Even though they provided a breakthrough view in some stances, like a first-hand understanding of the link between contemporary TB and HIV, they did not fully take it as a major contribution that inverted the usual core–periphery distribution of knowledge. Among the Brazilian social sciences and AIDS NGOs I found a different atmosphere than that of biomedical settings. It happened as if the NGO connections with mainstream centres like the WHO and Northern funding

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agencies followed different routes and rules than those of the biomedical community. Different agendas and different paces. At that time, the leadership of the AIDS programme at the WHO was engaged in listening to worldwide constituencies as the only way to develop efficient AIDS policies. With no chemical cure in sight, prevention was the word, and prevention was to be implemented by community organizations if it was to be implemented at all. In that sense, the flows between the main central agencies and the NGOs I visited in Brazil happened both ways. In contrast to what happened within the core of biomedical sciences, the creative responses developed by social activists in Brazil came rapidly to the top levels of global institutions and, from there, spread around the world. A good example comes from the formulations of Herbert Daniel,10 a board member of the Brazilian Interdisciplinary AIDS Association (ABIA) and a founder of the Pela VIDDA group.11 A writer and a political activist, Daniel published extensively in ABIA’s newsletter and spoke out in many public places. His voice, together with Betinho’s, another founder of ABIA whose life had been long involved with anti-dictatorship politics,12 helped shaping a public awareness regarding AIDS as a political and social issue that affected everyone closely. The media had been treating AIDS as not only a gay and exotic disease but also as a foreign, northerner disease. The acknowledgement, by public figures, that AIDS was also their problem, and their insistence on the fact that it was anyone’s problem, helped broaden its scope. Or, in other words, the idea that AIDS was a problem that affected society in general and that it should be addressed by public institutions started earlier in Brazil than in most other places. The awareness-raising promoted by ABIA, in which Daniel had a major role, included a number of messages regarding prevention, sharing responsibilities, stigma-reduction, and the promotion of solidarity. The very words of Daniel were adopted by WHO. The first leader of its Global Programme, Jonathan Mann,13 acknowledged the fact by making a public homage to Daniel in the 1992 International Conference held in Amsterdam and by dedicating to him the state-of-the-art book AIDS in the World (Mann et al. 1992). In sum, the circulation of knowledge in the spheres of prevention and social action was intense and multi-directional, whereas its biomedical counterpart very much remained as the traditional, North–South colonial style that accounted for no meaningful South–North contribution except when – like under colonialism – they were about prime matters and raw data.

Interconnections Why were these two spheres so different? If we imagine a densely connected world, as theorizers of globalization like to suggest, actual networks emerge with different densities, both due to their particular qualities and to

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historical contingencies. For instance, the leadership of Jonathan Mann at the Global Programme created a difference in attitude and in the promotion of community-based organizations as partners in the struggle to contain AIDS. Whether street sex workers, religious agents or gay activists, their voices were crucial in understanding, reacting and acting upon the epidemic. Knowledge flowed in different directions, back and forth, shortening and inverting hierarchies. Nothing of the sort happened in the high-tech world of contemporary biomedicine, even though there might have been a lot to learn from the wards of the most remote and peripheral hospitals. While in the field I got a sense that the networks of biomedicine and the networks of social action, the latter intimate to the social sciences (for many of the NGO leaders were social scientists), were quite independent in spite of sharing the same wider goal. At least this was my experience in Rio de Janeiro in the early 1990s. Even though major NGOs such as ABIA had been created with the participation of physicians and biomedical researchers, there seemed to be little communication between them and social activists. One the one hand, activists regarded health services as part of the government sphere, prone to the same rationale that they were confronting by definition. Individual physicians might be good partners in a common struggle, but the biomedical establishment was on the side of the government, and whatever the government was doing was inadequate. On the other hand, AIDS physicians regarded activists as complainers that were not always fair on their targets, unable to address the true difficulties of treating AIDS, lost in rhetoric about human rights and condoms, and incapable of fighting for the basic health needs that the populations with AIDS would require. The spheres were, then, apart. The interaction between biomedicine and social organizations, as I had known it before in New York city, via the world of ‘treatment activism’, did not develop in Brazil until the mid-1990s. And even then it was as a response to attempts to implement vaccine trials seen with mistrust in a country accustomed to reacting against potentially damaging experiences from pharmaceutical companies.14 By the time I left Brazil and wrote Global Responses, in the mid-1990s, my expectations regarding the Brazilian impact on the global making of knowledge in response to AIDS had not been matched. I could report no spectacular influence in change, parallel to what is described for the impact of northern gay-based activism in the world of biomedical research. I had to refrain from theorizing about new trends in global interaction and about new ways of knowledge making. If in the sphere of activism one could find an intense circulation of knowledge throughout the entire world, in several directions, at the core of biomedicine the interactions followed a pattern of core– periphery distribution of knowledge. Whatever might be new and meaningful came from the first world. That also meant that if a cure for AIDS was to be found, it was likely to be first-world style, therefore expensive and prone to replicate the divide between rich and poor that had been there before.

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Change But things changed. Things started changing after the 1996 announcement of the effectiveness of a combination of antivirals at the Vancouver International conference on AIDS. Like AZT before them, the combination of new drugs was expected to be expensive. The optimal therapy consisted of a succession of antiviral ‘cocktails’, each of their components at a prohibitive cost. Neither the prime matters nor the manufacturing process made them that expensive; it was the less tangible payment for patented knowledge that accounted for their price. The pharmaceutical companies that developed the drugs demanded returns from the expenses with the research involved in the development of those formulae. A major partner in the health industry and a crucial element in the development of new treatments, pharmaceutical companies do not necessarily abide to a logic of serving the public by maximizing health and well being; theirs is the corporate logic of maximizing profit.15 It was at this moment that Brazil took an innovative stance within the complex web of medical care, justice, knowledge, trade rights and human rights brought together by the AIDS epidemic. After years of fighting for the end of AIDS, now there were treatments that might, at least, put an end to many of the ailments experienced by people with AIDS. Both the clinical and the serological evaluation of the effects of the new treatments were highly encouraging. People felt much better and HIV seemed to go undetectable in their blood. The new drugs were the closest there was to a cure. Yet they were too expensive, and the main reason behind it was the embedded cost of knowledge. Like in older times when pharmacists charged their clients for the use of family recipes kept in secret, companies were charging for the use of ‘secret’, or patented, knowledge – but now at exorbitant prices. According to international rules of trade, companies and subjects are entitled to charge for the use of any piece of knowledge they ‘own’.16 But ‘owning’ and charging for knowledge that is life saving, particularly at a time when so much pressure had been mounting to make available any piece of knowledge that could intervene on the AIDS epidemic, incurred an immoral resonance. Around the world, companies were criticized for the prices charged and were pressed into making them available for less cost and more people. Brazil was able to short-circuit the problem and make those expensive drugs available for free in the public system. How did it happen? Within the limits of this article we can only outline the factors that contributed to that ‘success story’. a) The public health system In spite of being so poorly endowed, the system existed and guaranteed assistance to anyone. As it depended on public funding and often went through periods of intense deprivation, whoever could afford private care sought it

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elsewhere, leaving the public system for the poor and the disenfranchised. However, the public system provided high quality care on occasions, such as within the public University Hospitals, where the better equipment and prestigious medical faculty could be found. In Brazil, unlike the United States, public universities are in the highest ranks of educational prestige, and their hospitals are accordingly equipped and praised. Assistance involving expensive procedures and sophisticated techniques was more readily found within those settings than in the private sector. Eventually, some sectors of the university hospitals worked with special grants and partnerships that provided the most sophisticated equipment and brought together the most distinguished researchers. Under those circumstances, the public sector was the place where most action upon AIDS took place. b) The specialty of infectious diseases AIDS was allocated to the specialty of Infectious Diseases in the early years of the epidemic. That specialty was almost entirely based on the public system. Its clients were mostly the poorer populations, affected by endemic and epidemic diseases, from which the groups with higher living standards were more protected. Health practitioners involved with the specialty had, more often than in others, a strong sense of social commitment. c) The development of a mature, multi-actor AIDS culture If the different sectors involved in the response to the AIDS epidemic in Brazil, like the NGOs, the health services, and the government, were seemingly disconnected in the 1980s, showing different agendas and different connections to the wider world, by the mid-1990s they had developed strong links and converging agendas – something that was not unconnected to the fact that a major loan from the World Bank required coordinated action (Biehl 2004, Foller 2005). The existence of a tangible goal like the antiviral therapies automatically created a common agenda for the different sectors. After years of raising public awareness regarding the need to develop an effective response to AIDS, there was something clearly identified to fight for: the new, albeit expensive, antiretroviral therapies. d) The law Brazilian constitution grants protection to its citizens. Under that principle, AIDS advocates developed suits against the government for not providing adequate treatment to people in need – people who were HIV infected and sick and were not given the existing treatments. Some of those law suits were a success (Scheffer et al. 2005) and created a precedent to the general distribution of the antiretrovirals in the public system. None of this would

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have been possible if it were not for the accumulated history of awareness raising and bridge-building between the different sectors. e) The know-how Biomedical research has had an important role in the history of Brazilian nation-building, and much of it was associated with the development of selfsufficient laboratories, with a local pharmaceutical industry and with the development of knowledge about infectious diseases. With the combination of that history, sophisticated laboratories, pharmaceutical know-how and a commitment to social causes, Brazilian scientists were able to replicate, via reverse engineering, the formulas of some of the antiretroviral treatments that made a difference for people with AIDS. That ability gave Brazil an increased power of negotiation regarding patented knowledge. f ) Power of negotiation Brazilian government had too easily signed WTO TRIPS (trade-related aspects of intellectual property rights), tying the country to the payment of royalties that included regarding those related to AIDS drugs. However, the mounting pressure from what was already an organized civil society, with a common agenda of responding to AIDS and using all possible means to be successful in the task, lead to an arm-bending situation with international pharmaceutical companies. Brazil threatened to break the prevailing patent rules and manufacture the drugs in the country if the pharmaceutical companies did not drastically reduce the price charges for the anti-retroviral drugs. This sort of arm-bending would not be possible if it were not for Brazil’s particular history and insertion within the Americas – combining, at once, the full entrance in neoliberal economy and an older tradition of struggling against what were seen as northern imperialist rules and regulations.

Conclusion The synergistic combination of the factors described above may depict how, at a precise historical moment, Brazil was able to provide an exemplary response to the AIDS epidemic. No single factor accounts for this unique response – it is the outcome of a combination of forces, events and singularities. The amount of energy developed within the activists’ sphere was reinforced by the international agencies and became strong enough, after a few years, to ‘infect’ the government to act in the same sort of style – the ‘activist state’ that President Cardoso sometimes refers to (Biehl 2004: 115). NGOs recruited the government for their cause and the government recruited the NGOs for their intervention in the public sector. A synergy resulted in action of a kind that inspired the world.

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Notes 1. This paper was presented at the conference The Politics of AIDS: Globalization and Civil Society, jointly promoted by the Göteborg University and the Museum of World Culture, 18–19 May 2006. I am very thankful to Maj-Lis Follér and Håkan Thörn for the invitation and for the useful comments that emerged at the discussion. Final editing for this paper was done while Visiting Faculty at the Watson Institute for International Studies and the Department of Portuguese and Brazilian Studies, Brown University, with a grant from the Luso-American Foundation for Development. 2. The ‘good news’ should be contextualized: they mean there are fewer new cases than the worst projections; the number of new HIV infections per year has approximately stabilized, and actually slightly reduced for men – while the new cases among women have grown (http://www.aids.gov.br/). 3. http://www.unaids.org/en/Regions_Countries/Regions/LatinAmerica.asp. 4. I conducted fieldwork among AIDS workers in Rio de Janeiro between 1990 and 1992, preceded by a short exploratory trip in 1989 and completed by follow-up trips. This was initially part of the work towards a PhD thesis in anthropology at the City University of New York Graduate Center, later turned into the book Global Responses to AIDS (Bastos 1999), but became – as occasionally happens with fieldwork – a larger experience of involvement with the different communities of actors intervening in the local responses to the epidemic – activists, health workers, bench scientists and social scientists. I also worked as a news reporter covering the International AIDS Conferences for the Portuguese weekly Expresso. 5. In a chapter dedicated to civil society and AIDS in Brazil, Maj-Lis Follér (2005) analyses in detail the entanglement of local and global social actors involved in the Brazilian civil society responses to AIDS. Critically analysing the role of pharmaceutical corporations, in the process, João Biehl (2004) develops the concept of a new, treatment centred and pharmaceutically-bound biomedical citizenship and the new mechanisms of exclusion it carries along. 6. In New York city and California, at least, there were all sorts of exploratory uses of promising drugs, whether coming from traditional herbalist bodies of knowledge (like the Chinese cucumber) or from manufactured drugs available over the counter outside the US. In pre-internet times, solid networks of consumers developed to discuss the uses and availability of non-tested drugs that offered the slightest promise of benefit. 7. In South Africa that sort of reaction was endorsed by the government until the mid-2000s, to the dismay of AIDS activists there and anywhere. 8. The West and East of the early 1980s are about the cold war partition, which still structured much of the international scene at the time. 9. I would witness this interest at a conference at the Watson Institute for International Studies and the Portuguese and Brazilian Studies department, Brown University, fall 2004, re-stated two years later. 10. Herbert Daniel (1946–92), a political activist and an author of fiction and nonfiction books, was one of the most influential AIDS activists in Rio de Janeiro, in Brazil and in wider spheres. Parallel to the empowerment of people living with AIDS (PWAs) that developed in the northern hemisphere, Daniel fought for the political stance of refusing to accomplish the predicament of death in its many senses, ‘civil death’ – or the erasure of political rights by a conservative and prejudiced society – being among them. He promoted solidarity as an answer to fight

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11.

12.

13.

14.

15.

16.

fear and hopelessness and he had a major role in the early years of ABIA and Pela VIDDA. Among many articles and speeches, he wrote the booklets A vida antes da morte, and A Terceira Epidemia. Pela VIDDA is an acronym whose initials mean ‘Pela Valorização, Integração e Dignidade do Doente de Aids’ (for the valorization, integration, and dignification of the AIDS patient) and that stands for ‘For Life’ (pela vida). It was founded in Rio de Janeiro in 1989, mostly due to the impulse of Herbert Daniel. After Pela VIDDA-RJ, many other similar groups developed in other Brazilian cities. Betinho, or Herbert de Souza (1935–97), was the founder of both ABIA and of IBASE, an umbrella NGO that supported all different research and intervention projects in Rio de Janeiro. Betinho wrote extensively and was one of the most prominent voices of people with AIDS in Brazil. His articles include ‘O dia da cura’; ‘A AIDS não é mortal’, ‘Direitos humanos e AIDS.’ Jonathan Mann was the leading figure of the distinctive global action upon AIDS promoted initially by the WHO. A Public Health specialist with a close understanding of the complex entanglements of health and society in the developing world, particularly as experienced in Africa, Mann initiated and headed, from 1986 on, WHO’s Special Programme on AIDS (later Global Programme on AIDS (GPA)). He promoted an innovative policy engaged in listening to the local constituencies and taking immediate action. He actually went around the world to assess the issues and defined invertention programmes accordingly. He included human rights issues in the frontline of AIDS action. The AIDS prorgramme became somehow too visible within WHO structures and in 1990 he resigned from the job claiming lack of support. He moved to the Harvard School of Public Health and started a new sort of influence from there – unhappily interrupted by his sudden death in 1998. In the mid-1990s WHO and other agencies tried to implement joint projects with Brazilian research centres in order to develop extensive efficacy trials for vaccine prototypes that had passed security trials. The issue generated an extensive public discussion and one of the issues often raised was the need for caution regarding any attempts on the part of northern laboratories to use Third World bodies as guinea pigs for experimentation; this reaction, adopted by many Brazilian activists, contrasted sharply with the eagerness with which people with AIDS in the US volunteered to participate in clinical trials. While the latter expected their participation in clinical trials to improve their chances of getting closer to a treatment, the former had historical reasons to be cautious, due to occurrence of unsafe practices in the past. Overall, the vaccine trial issue gave rise to an expansion in the scope of topics discussed by Brazilian AIDS NGOs, from a purely social issues sphere to a wider understanding of the biomedical issues at stake. AIDS activists were not shy to present pharmaceutical companies as guided by homicidal greed. A number of times they were targeted due to the prohibitive prices charged for certain drugs used for people with AIDS. This happened from early on in AIDS activism, before the ‘cocktail’ of antiretrovirals. Targets included the companies that produced AZT, the first antiretroviral drug on the market, as well as manufacturers of drugs used in the treatment of specific opportunistic infections. This is a problem that affects many other aspects of human life and the creation of inequalities. Any piece of knowledge can be patented and henceforth ‘owned’, the ‘owner’ being entitled to charge for its use even to those who may have used

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it for centuries, as happens with the indigenous knowledge regarding therapeutic uses of plants.

References Bastos, Cristiana (1999), Global Responses to AIDS: Science in Emergency. Bloomington: Indiana University Press. Berkman, A., J. Garcia, M. Muñoz-Laboy, V. Paiva, and R. Parker (2005), ‘A Critical Analysis of the Brazilian Response to HIV/AIDS: Lessons Learned for Controlling and Mitigating the Epidemic in Developing Countries’. American Journal of Public Health 95(7): 1162–72. Biehl, João (2004), ‘The Activist State: Global Pharmaceuticals, AIDS, and Citizenship in Brazil’. Social Text 22(3): 105–32. Daniel, Herbert, and Richard Parker (1993), Sexuality, Politics and AIDS in Brazil : In Another World? New York: Taylor and Francis. Epstein, Steven (1996), Impure Science: AIDS, Activism and the Politics of Knowledge. Berkeley: University of California Press. Follér, Maj-Lis (2005), ‘Civil Society and HIV/AIDS in Brazil’, in Maj-Lis Follér and H˙akan Thörn (eds), No Name Fever: AIDS in the Age of Globalization. Göteborg: Studentlitteratur. Galvão, Jane (2002), ‘A política brasileira de distribuição de medicamentos antiretrovirais: privilégio ou um direito?’ Cadernos de Saúde Pública 18(1): 213–19. Galvão, Jane (2005), ‘Brazil and Access to HIV/AIDS Drugs: A Question of Human Rights and Public Health’. American Journal of Public Health 95(7): 1110–16. Landim, Leilah (1988), Sem fins lucrativos. Rio de Janeiro: ISER. Mann, Jonathan, Daniel Tarantola and Thomas Netter (eds) (1992), AIDS in The World. Harvard University Press. Oxfam GB (2001), Drug Companies vs. Brazil: The Threat to Public Health. Oxford: Oxfam. Scheffer, Mario et al. (2005), O remédio via justiça: um estudo sobre o acesso a novos medicamentos e exames em HIV/AIDS no Brasil por meio de ações judiciais Brasília: Ministério da Saúde.

14 Mechanisms of Representation and Coordination of the Brazilian AIDS Responses: A Perspective from Civil Society Veriano Terto Jr and Jonathan García

Introduction This chapter presents some principles and mechanisms of representation and coordination that have shaped the Brazilian response to HIV/AIDS. It takes the perspective of civil society, since the authors have worked primarily in this context. We argue that the responses to the epidemic in Brazil parallel the construction of democracy in the country in the last 25 years (see also Chapter 13). Some particularities of the Brazilian response will be noted – not to say that they can be supplanted in other countries but that they can serve as reference for other young systems of democracy in developing countries. The chapter first describes briefly the context in which the responses to HIV/AIDS developed. The argument is structured according to how democratic principles have been framed as a result of history, how they have been actively constructed by legal frameworks and governmental agencies, and, most importantly, we focus on how democratic principles emerged from activists and civil society. We explore the ways in which these principles influence the structure, policy, and base-level practices of the current Brazilian public health system – with an eye on these principles’ impacts the elaboration of concepts that drive actions from civil society organizations and mobilize social movements working with HIV/AIDS. This leads to a description of some of the governmental and non-governmental mechanisms that regulate politics and initiatives, noting the ways in which these mechanisms are interpenetrating. In the last section, we reflect upon some ‘lessons’ learned in the Brazilian experience, considering the importance and particularities of social movements working in relation to the epidemic.

Fundamental principles: sojourn in history The responses to HIV/AIDS in Brazil began from the grassroots and local organizations and municipal governments (Parker 1997). Only later did this 242

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response become national and increasingly involve higher levels of government. Gay rights organizations were the first to mobilize communities in reaction to the challenge of an epidemic that arrived in Brazil as a ‘gay disease’ (Terto Jr 1997). These organizations provided information to try to correct misconceptions about the disease; they worked to mobilize a reaction against social prejudice related to the epidemic towards homosexuals and other affected populations. The first official AIDS cases in Brazil were reported in 1981. But AIDS was preceded by an epidemic of prejudice that already existed in the country (Daniel and Parker 1991). The first HIV/AIDS-related non-governmental organizations were founded in 1985 in São Paulo and Rio de Janeiro, the cities that have been most affected from the beginning of the epidemic. Several of these organizations included people from the gay rights movement from the early 1980s as well as leaders in science, medicine, academia, and religions, among others – people who noted the growth of the epidemic in the absence of governmental responses to this crisis. It was only until 1989 that organizations were founded and composed of People Living With HIV/AIDS (PLWHA) (Galvão 2000). It is significant that the emergence of the first AIDS organizations and the conformation of a Brazilian AIDS social movement paralleled a broader mobilization of the Brazilian civil society in search of the redemocratization of the political system after 20 years of military dictatorship. This period of social mobilization coupled with negotiations with ruling elites is known as abertura (opening) and is characterized by the efforts of diverse progressive sectors (including workers, universities, base communities of the Catholic Church, as well as some segments of the elite) of Brazilian society to re-establish democracy and restore citizenship (Berkman et al. 2005; Follér 2005). With the gradual withdrawal of military control emerged freedom of expression, free elections, proliferation of political parties, social justice: all emblematic symbols of this nascent democracy. Notably, several principles (including equity, freedom, diversity, participation and solidarity) of the democratization movement shaped the principles and concepts that guided social movements and government responses to the epidemic. This brief historical narrative helps us to better understand today’s landscape of diverse responses from the civil society organizations and contexts and spaces in which they were generated.

Principles from civil society: Re-framing democratic citizenship in times of HIV/AIDS There are several principles and concepts that emerged from civil society that have shaped the ethical and pragmatic responses to HIV/AIDS – including those of the government, public health officials, scholars, the business sector, religious groups, among other social actors in civil society. This section

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evokes more questions than it provides answers. How have civil society organizations reframed democratic principles? Have they created a separate set of principles? How have these principles been expressed by grassroots groups and other civil society organizations? Have principles coming from the ‘top’ been vindicated by people on the ground through their understandings of citizenship in their daily interactions with ‘politics’? The proposition of principles from civil society sectors working with HIV/AIDS were influenced by the broader movement for the creation of a more just and inclusive public health system (Unified Health System). They also fostered an impetus for advancing existing and new civil rights, as we describe in following paragraphs. This is exemplified by the extension of universal treatment for people with HIV/AIDS without distinguishing AIDS from other illnesses that were equally covered universally. This was important for guaranteeing social justice and equity for HIV/AIDS patients as much as for other patients. It also shows an interpenetrating dynamic between state institutions and grassroots sectors – a relationship that needs deeper investigation and analysis. The undertone of the chapter explores the significance of embodied democratic rights – with special attention to how they are distributed, interpreted and lived. As opposed to viewing democratic rights as removed from the individual, or ’given’ to the individual by the state, the embodiment of rights requires that the person not only understands the meanings of these rights, but also that these rights are created and defined by the individual according to personal and communal experiences and needs. Citizens constitute rights, and rights constitute citizenship. Social movements constructed concepts that reframed AIDS as a social and political crisis to be confronted by reconceptualizing and reaffirming the meanings of citizenship, of democracy, and of life itself. These concepts were effective in mobilization because they drew from contemporary political and cultural ideals of Brazilian society, as well as because of the strong leadership of charismatic activists who personally lived with the virus. In fact, the force of these driving principles was ignited in activist circles early on in response to the epidemic. Among them were Betinho (Herbert de Souza) and Herbert Daniel. Betinho was involved in activism from the 1960s in issues including human rights, citizenship, socio-economic exclusion, and hunger, and was a prominent leader of the democratization movement. In the 1980s he was one the first public figures to come out as an HIV+ person. He participated in the foundation of several non-governmental organizations, such as ISER (Institute for Religious Studies), ABIA (Brazilian Interdisciplinary AIDS Association), and IBASE (Instituto Brasileiro de Análises Sócio-Econômicos). Solidarity incarnate – Betinho was a leader in joining forces within the ambit of social justice and understanding HIV/AIDS within a broader spectrum of causes. One of his most famous texts, A Cura da AIDS (1994), captures the shift from thinking of PLWHA as the living dead. He writes: ‘Suddenly, I realized that the cure for AIDS already existed before

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it ever did, and that its name was life’ (in Souza 1994 – translated by the authors). This concept of ‘cure’, despite the fact that it was anachronistic in a time when there were so few possibilities to treat AIDS, was determinant for social movements to reaffirm AIDS as a crisis that would be overcome by medical, social and political solidary efforts. Betinho also considered the democratization of information as one of the foundational principles in the process of building a true democracy, where even the poor and marginalized have rights and responsibilities. For information is crucial to understanding what a right is – and thus the just distribution of knowledge among citizens is imperative in the very definition of a right. As stated earlier, rights must be claimed by citizens in order for them to have any democratic significance. The democratization of information has been integral to the response from civil society to the HIV/AIDS epidemic from the emergence of the movement until today. Adherence to this principle continues to be a challenge to activists, nongovernmental organizations, the Ministry of Health, and donor agencies. In the distribution of information, the language of particular populations, their socio-economic conditions, and their culture must be considered. Thus, the pragmatic distribution of knowledge brought forth the emergence of culturally-sensitive and epidemiologically informed interventions aimed at ‘target populations’ and ‘risk groups’. This necessity to particularize information (according to identities, for example) has had a complex, dialectic, and sometimes contradictory relationship with the democratization of knowledge of universal rights. In order to keep the spirit of this principle alive, it is important to remember that democratizing information requires that people truly understand the significance and importance of knowledge. Today one of the most common ways in which this challenge has been addressed is by capacitating ‘community multipliers’ that reproduce this knowledge within local communities, creating a sense of personal ownership and responsibility over our rights. Another set of major concepts that emerged in civil society that should be highlighted is related to a conscious shift in framing the idea of dying from to living with HIV/AIDS. These principled concepts are generally viewed as important because they ‘provide’ some ‘psychological solace’ for the individual with HIV/AIDS. But most importantly, they provide an integral sense of continued citizenship – if citizenship is understood as ‘deserving’ a set of fundamental rights (as opposed to privileges). With more social, political and economic implications, the concepts of social and civil death have been recognized by civil society organizations fighting for the rights of PLWHA in response to decisions of governments, donors, and civil society organizations since the beginning of the response to HIV/AIDS worldwide. This is clear, especially in the cost-benefit analyses made at the time of investment and in evaluating the trade-offs between prevention and treatment. Affirming life after having been diagnosed with HIV reinforces the rights of PLWHA, in

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opposition to discourses that frame the PLWHA as a passive patient or a deathbound person that could be excluded from different social and civil spheres of human life (Daniel 1989). These concepts were proposed by Herbert Daniel, another leading and remarkable HIV-positive activist and writer in the fields of human rights and sexual rights in Brazil who also fought against the dictatorship from the 1960s. Daniel was one of the directors of ABIA (Brazililan Interdisciplinary AIDS Association) until his death in 1992. The continuance of a ‘normal’ life has been emphasized by PLWHA by reclaiming the rights to have romantic relationships and having children, for example. Certainly this principle of living with AIDS has been deeply enforced by the development of life-prolonging treatment and self-care.

Principles of the Unified Health System: in search of a democratic public health One of the results of the democratization process in the 1980s was the creation of the Constitution of 1988, in which a series of rights was established and others were proposed. Among the most progressive rights written into the new constitution was that which defined health as a collective right and responsibility of the state. The so-called Sanitary Reform Movement that existed in Brazil from the 1950s had been advocating for this constitutional right to public healthcare for many years ( Jatene 1999; Arretche 2002). This constitutional right to healthcare facilitated arguments that would be made on behalf of universal access to medications for HIV/AIDS, marking the beginning of a long path to obtaining meaningful healthcare rights, among other human rights, for those living with AIDS. The Constitution of 1988 also ‘replaced the previous centralized and insurance-based model’ with a decentralized system that guaranteed ‘free and universal entitlement to any level of health care along with the state responsibility over its provision’ (Arretche 2002: 10). According to this constitutional mandate, the public health system was restructured into a ‘Unified Health System’ (Sistema Único de Saúde – SUS). The Unified Health System has three main ideological principles, namely: universality, integrality, and equity; and operational principles, two of which are social control/participation (controle social) and decentralization. The conception and proposition of these principles emerged from a coming together of several social movements, including the women’s and family health movements, the mental health movements, the insipient AIDS movement, and other health-related movements composed of health professionals, public health officials, scientists and activists in search for a ‘new public health’ that could respond to the disparities in access to health and other forms of social exclusion prevalent in the country. First, the idea of universality emerged directly from an attempt to democratize health services to treat all

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Brazilians – calling for the proactive investment in addressing health disparities in places where the state does not reach the population (Gouveia and Palma 1999). Second, because of the division between different aspects of medical care that were disunited before the Unified Health System was developed, the idea of integrality brings together treatment and prevention (Mattos 2003). This principle is particularly important when applied to the rights of people with HIV/AIDS, because it mirrors the global movement towards a comprehensive approach integrating prevention, treatment and care. Third, the principle of equity in health is proximal to that of universality, but it highlights the necessity of extending the obligation of the state to cover disadvantaged social groups and geographic regions where healthcare is scarce, without distinction of race, socio-economic status, race, or health condition. Moreover, the first of the operational principles, social control, refers to the importance of community participation. This principle is operationalized through Health Conferences and Councils at the national, state and municipal levels. This principle is particularly important in the discussion elaborated here, in an attempt to better understand the interaction between civil society and the state. The term social control could be equivocated with social engineering (where the population would be controlled from above); conversely, the idea of social control here is actually referring to the control of society from below – stressing the participation of people on the ground experiencing the health system as well as health agents. Second, the principle of decentralization in the administration of the Unified Health System is important for delineating the responsibilities of each level of government (local, state, and federal). This decentralization is two-fold: managerial and in funding. Throughout the development of the governmental response to HIV/AIDS, the idea of decentralization emerges as crucial for reaching local communities and for holding these communities accountable for the management of local health systems (CONSAÚDE 2006). Within these principles that guide the policies of the health system, we can see the extent to which principles of democracy brought forth by civil society have been incorporated. The road towards the consolidation of the right to health continues today. Reflecting upon the history of the ‘democratic’ dialogue between principles that emerged from the top (i.e. from the constitution, legal mandates, donor agencies, etc.) and those that sprouted from the grassroots (and especially from the embodied experience of HIV/AIDS activists) – it seems that HIV/AIDS-related rights can only be consolidated when they are dialectically supplied through structural frameworks and claimed by the voices of citizens. The consolidation of the Unified Health System is still a great challenge for the Brazilian population in upholding and applying its principles (Pinheiro and Mattos 2005; Berkman et al. 2005). In spite of these challenges, these principles are still valued strongly and are shared and defended by health professionals, managers, by AIDS and health-related social movements.

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National AIDS Coordinating Authority The governmental reaction to HIV/AIDS began at the municipal and state levels in the early 1980s – a response which may or may not be considered coming from the ‘top’. Notably, the state of São Paulo funded the Center of Reference and Training for AIDS (CRTA) with money that was not tied to the federal government. The decentralized programmes created by São Paulo served as an example for other states and for the federal government of the greater potential of decentralized programmes tailored to specific populations – a design concordant with the newly established constitutional mandate. The programmes run and funded independently by São Paulo used studies conducted by the CRTA regarding the influence of public opinion and civil society organizations to create comprehensive policies that took into consideration the characteristics of the epidemic in this state. The development of state-run programmes was hindered, however, by a shortage of state-level funding (Teixeira 1997: 61). On another level, the centralization of the National Coordination differed from the more decentralized AIDS policy programmes that were funded by some states without using federal money. The reaction of the Brazilian federal government began with the creation of the National Coordination for Sexually Transmitted Diseases and AIDS (Coordenação Nacional de DST/AIDS) in 1986. In 1988 the National Coordination became consolidated with the technical and financial help of international governments. This institutionalization led to higher levels of centralization of policy decisions: The National Coordination created policy and the Brazilian states implemented these measures. The ‘national’ character of AIDS-related health policy diminished the autonomy of the states to produce programmes that catered to the specific epidemiological and cultural needs of each state’s population. In the beginning of the 1990s, there was a period of dismantling of some of what was constituted by the end of the 1980s. However, after political pressure from different sectors of society, some political changes occurred within the government administration in the early 1990s, which led to a period of reconstruction and institutionalization of the National AIDS Programme (Follér 2005). Additionally, the World Bank loans that have provided support from 1992 until now have been crucial for that new phase for the functioning of the National AIDS Programme. The World Bank loans reinforced the institutional structure of the AIDS programme – in comparison to programmes that addressed other diseases such as malaria, which are less organized. Funding from the World Bank also opened a line for funding civil society organizations, creating a reference for accessing public funds (Galvão 2000). The resulting proliferation of non-governmental organizations and other civil society organizations supported by governmental funds

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was important in the context of a young democracy where the relationship between the state and civil society was healing from authoritarian control from the time of dictatorship. But, on the other hand, arguments that civil society is being co-opted by the state and that non-governmental organizations are ‘used’ to implement (sometimes interest group driven) political agendas, are supported by the possibility that non-government organizations and activists are being left to do the job of the state, including the provision of healthcare and other social services – which ought to be the responsibility of the government in order to assure commitment, equality and universality in these rights. These are current debates that centre on the mechanisms through which principles emerging from civil society and from the state are implemented. Currently, the National AIDS Programme follows several mechanisms of coordination. One of the most important organs is the National AIDS Commission, which became an important subcommittee within the National Coordination to create a stronger link between the government and civil society and to pressure politically other parts of the National Coordination. This Commission is composed of epidemiologists, leaders of the Health and Sanitation Movement, physicians, and representatives of the AIDS social movement. Besides the National AIDS Commission, the National AIDS Programme includes several working groups, committees, and advisory boards where civil representation is an integral part of institutional decisionmaking. Working groups are focused on different areas, such as epidemiology, research, access to treatment, and human rights. The bureaucratic structure of the National AIDS Programme is decentralized in the sense that these AIDS commissions, working groups, committees, and advisory boards are also present in the state- and municipal-level AIDS programmes where civil society is represented. This depends, however, on the level of institutional capacity of the state-level programme. Depending on the local level of democracy, per se, there is a disparity in the participation of non-governmental organizations, in their autonomy, and in their programmatic roles. The participation and representation of civil society in AIDS programmes and commissions reflect (or should reflect) the participation of civil society in the regulation and politics of a public health system, the United Health System, as a whole. The social control principle is one of the most important in guiding this representation not only in AIDS programmes, but also more generally. It is worth mentioning that the policies of the public health system are decided by vote at biannual national, state, and city-level health conferences, where civil society comes together with health professionals, managers, and health agents. A question that is left unanswered is whether the quantity of structures for representation at different regional levels and their frequency of gathering really respond to the needs of the people and to the demands of social movements (i.e., the quality of representation).

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AIDS social movement coordination and the construction of solidarity Currently, there are approximately 700 AIDS NGOs in Brazil working on education, prevention, care, research and advocacy. It is difficult to know how many of these organizations work exclusively on AIDS because some of them are organizations that work on multiple causes. Take, for instance, a women’s rights organization that has several projects, some of which are related to HIV/AIDS and others related to breast cancer, domestic violence, racial discrimination, etc. On other hand, there are organizations that work primarily on HIV/AIDS and include other projects, such as those focused on intellectual property rights and sexual and reproductive rights. That is to say that there are few organizations dedicated purely to working on HIV/AIDS. Many HIV/AIDS NGOs are organized in regional and national networks according to their agendas (e.g., HIV/AIDS network, Women’s network, etc.). Organizations such as GAPA (Grupo de Apoio à Prevenção à AIDS) have institutions in several states, and they share common principles and missions. Although they are autonomous, they constitute a somewhat formal network. However, there is no truly formal and central structure for the national coordination of Brazilian NGOs working with HIV/AIDS. Since 1989, approximately every two years, the HIV/AIDS NGOs gather in national meetings called ENONGs (Encontro Nacional de ONGs). At these meetings representatives are elected to serve on several commissions of representation in governmental and non-governmental forums. The meeting is an occasion for the deliberation of political positions, for the exchange of experiences, and for capacity building. At the last ENONG (held on 13 September 2005 in Curitiba, Paraná) approximately 380 AIDS NGOs representatives took part in deliberative assemblies, workshops and lectures. In addition to these representatives from AIDS NGOs, a number of scholars, health professionals, and governmental officials participated – but they have not been granted the ability to vote on decisions at this forum. More recently founded, ERONGs (Encontros Regionais de ONGs), the regional meetings of AIDS NGOs, occur approximately every two years, as well. These meetings are more focused on debating regional issues – and they function as a type of preparation for the national meeting (ENONG). In addition to these regional and national meetings where decisions are taken and where common principles are discussed and reinforced, there is a national network of people living with AIDS (RNP+ or Rede Nacional de Pessoas Vivendo com HIV/AIDS). This network was founded in 1995 and focuses on the integration and visibility of PLWHA in the collective response to AIDS, as well as in the promotion and defence of civil rights. Notably, this network is constituted by persons living with HIV/AIDS and not by organizations. The multiple types of forums dedicated to uniting people and organizations

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working for the health and rights of PLWHA display several aspects of the principles mentioned before, including the democratization of information and the value of life after HIV infection. The diversity of identities and agendas that come together in these conferences also show the complexities in defining an ‘HIV and AIDS social movement’ where competition occurs, even within communal spaces for the discussion about similar forms of adversity. Moreover, despite the relatively high-level organization in the relationship between non-governmental organizations, the HIV/AIDS social movement should not be limited to NGOs. The ambit of civil society is broader and less tangible than institutional representation through NGOs. The social movement is a collective response that includes religious institutions, corporations, universities, women’s community associations, and so forth. The social movement inhabits a ‘sphere of power’ within civil society. Yet, the movement undoubtedly interacts with other power centres, sometimes in cooperation and other times in contention with government agencies (e.g. Ministry of Health and Ministry of Education). In Brazil, the relationship between AIDS NGOs, the state, and donor agencies is so closely tied that the very definition of collective action comes into question – partly because it somewhat resembles the corporatist model of political negotiation between trade unions, the state and business. The social movement depends to some extent on government agencies, especially through earmarked funding streams; while, at same time, the National AIDS Programme has appointed leading activists from the Sanitary Reform Movement as well as from the HIV and AIDS movement to head the National AIDS Programmes. The importance of inter-sectorality based on solidarity cannot be forgotten. Even taking into account the participation of other sectors of civil society, the social movement should also foster the flow of information, the exchange of principles and experiences, the creation of cultures and frameworks, and the inclusion of diversity. Some factors that can impede the solidarity among sectors include competition for funds, co-optation by the government or by the private sector (e.g. pharmaceutical industry), fragmentation and competing agendas, clash of identities (such as political divisions developed between men and women, whites and people of color, and between PWA and HIV individuals), just to mention a few fault lines within the AIDS social movement (Epstein 2005). These are challenges that must be confronted and kept in mind in this daily exercise of solidarity with the common goal of creating a broader response to HIV/AIDS based on embodied democratic citizenship. According to the National Network of Prostitutes (Rede Nacional de Prostitutas) democracy is strong when differences in cultures are valorized and not generalized. Solidarity captures these differences without denying them (Leite 2006).

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Points of reflection

• The emergence of the Brazilian AIDS social movement is linked with

•

•

•

•

•

the broader socio-political mobilization to redemocratize the country in the 1980s. In this sense, the responses to HIV/AIDS are embedded in the historical, political and economic context (Galvão 2000; Parker 1997). Since its advent, Brazilian AIDS NGOs saw AIDS as a political issue and not only as a health issue or a moral question. This political vision is evident in the focus of the HIV/AIDS movement on social mobilization, collective participation, and public health based on human rights. These are strategies that go beyond the technical, biomedical or traditional responses of public health. The political emphasis of the response to HIV/AIDS fostered interdisciplinarity, integrality, and intersectorality. These principles are necessary to mobilize and integrate different disciplines and social sectors and to mobilize effective networks of solidarity. AIDS responses depend on the development and linking of technical and political capacities. The Unified Health System, for example, is a structure composed of a network of public laboratories, hospitals, expertise, and other health services and goods. The political capacity of the social movement has placed pressure on the Unified Health System through mechanisms of representation and participation through social control (controle social), improving more and more the ability of the system to respond to the needs of the population. On the other hand, quality needs assessment also improves the technical infrastructure of the Unified Health System (Pinheiro and Mattos 2005). AIDS responses can also stimulate and strengthen the democratization of public health systems as well as reinforce technical, legal and political solutions to health problems. It is worth mentioning the law granting universal access to AIDS treatment (Law 9313/96) as an example. Certainly the political pressure from civil society organizations and people living with AIDS was crucial for enactment of this law. This law improved the overall technical capacity of the public health to distribute medication; it improved the efficiency of the judicial system; and it guaranteed from legal and public health perspectives the treatment for people with AIDS. Community participation also produces knowledge, expertise, and access to rights and citizenship. When civil society creates and proposes concepts and principles, as described earlier, it is an intervention in the production of knowledge related to and representations of the HIV/AIDS epidemics. These concepts created a counter-discourse to the panic and terror discourses that defined earlier understandings of HIV/AIDS. This argument is made clear today when civil society organizations are questioning the meanings of intellectual property and patent protection systems in order to democratize access to medication and guarantee its universality. The question of democratizing knowledge is particularly important as it is

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produced from below from the dialogue between civil society organizations and local communities. Exchanges of power between socio-political agents undoubtedly guide the ways in which (and for what purposes) information is produced, gathered and disseminated. Information is key for devising efficient prevention campaigns, mobilizing resources, creating a sense of ownership of the epidemic, determining prospects for investment, and coordinating relationships between different levels of the Brazilian federalist government. In the case of the Brazilian response to HIV/AIDS, knowledge can be framed as a dialectical relationship between the democratic principles of the Unified Health System and those that emerge organically from civil society.

Conclusion The level of democracy, the definition of what is deserved as a right and the ability of citizens to articulate their needs, has had great impact on the organization of AIDS responses. Both the principles brought by civil society and those written into law have both defined the meaning of citizenship for those living HIV/AIDS. Notwithstanding, rights can only be truly meaningful when these are incorporated and understood in daily experience. The consolidation of democracy has several levels – and this idea of embodiment of rights can be exercised when equity, freedom, diversity, participation and solidarity can be guaranteed. The response to HIV/AIDS, embedded within a long trajectory of redemocratization, highlights a dynamic process of narrowing the gap between the state, its institutions, and the people. As mentioned earlier, a democracy begins with free elections and freedom of expression, but the embodiment of these democratic rights has occurred in certain places because of the way that civil society, communities, and individuals have taken ownership of these rights as part of themselves. In this chapter, we discuss the particularities of the Brazilian responses to the crisis imposed by HIV/AIDS and focused on the roles played by the civil society organizations. We hope to have demonstrated, based on the Brazilian experience, that the contributions of those organizations can go beyond the conduction of prevention and care activities complementary to the state. Instead, those organizations can also play an active role in the proposition of principles and concepts that can guide knowledge, expertise and practices, as well as reinforce democratic contexts necessary for effective responses to HIV/AIDS.

References Arretche, M. (2002), The Politics of Health Care Reform in Brazil. Washington DC: Woodrow Wilson Center.

254 The Politics of AIDS Berkman, A., Garcia, J., Muñoz-Laboy, M., Paiva, V. and Parker, R. (2005) ‘A Critical Analysis of the Brazilian Response to HIV/AIDS: Lessons Learned for Controlling and Mitigating the Epidemic in Developing Countries’, American Journal of Public Health 95(7): 1162–72. CONSAÚDE (2006), SUS – Sistema Único de Saúde. Accessed on 18 October 2006 at http://www.consaude.com.br/sus/indice.htm. Daniel, H. (1989), Vida antes da morte/Life before death. Rio de Janeiro: Jabuti. Daniel H. and Parker, R. (1991), AIDS: a terceira epidemia. São Paulo: Iglu. Epstein, S. (2005), ‘AIDS activism and state policies in the United States’. In Follér, M.-L. and Thörn, H. (eds) No Name Fever: AIDS in the Age of Globalization. Lund: Studentlitteratur, pp. 169–91. Follér, M.-L. (2005), ‘Civil Society and HIV/AIDS in Brazil: the emergence of an AIDS policy’. In Follér, M.-L. and Thörn, H. (eds), No Name Fever: AIDS in the Age of Globalization. Lund: Studentlitteratur, pp. 195–225. Galvão, J. (2000), AIDS no Brasil: a agenda de construção de uma epidemia. São Paulo: ABIA, Ed. 34. Gouveia, R. and Palma, J.J. (1999), SUS: na contramão do neoliberalismo e da exclusão social Estudos Avançados (dossiê Saúde Pública), 35: 139–46. Jatene, A. (1999), Novo modelo de saúde. Estudos Avançados, n. 35 (dossiê Saúde Pública), 35: 51–64. Leite, G. (2006), Nossa frágil democracia. Beijo da Rua, Rio de Janeiro: Coluna da Gabi, contra-capa. Mattos, R. (2003), ‘Integralidade e a Formulação de Políticas Específicas de Saúde’. In Pinheiro R. and Mattos, R. (eds) Construção da Integralidade: cotidiano, saberes e práticas em saúde. Rio de Janeiro, IMS/UERJ, ABRASCO, pp. 45–60. Parker, R. (1997), ‘Introdução’. In Parker, R. and Galvão, J. (eds) Políticas, Instituições e AIDS: enfrentando a epidemia no Brasil. Rio de Janeiro: ABIA, Jorge Zahar Ed., pp. 7–15. Pinheiro, R. and Mattos, R. (eds) (2005), Construção Social da Demanda. Rio de Janeiro: IMS/UERJ, ABRASCO. Teixeira, P. (1997), ‘Políticas públicas em AIDS’. In Parker, R. and Galvão, J. (eds), Políticas, Instituições e AIDS. Enfrentando a epidemia no Brasil. Rio de Janeiro: Jorge Zahar Editor, p. 61. Souza. H. (1994), A Cura da AIDS/The Cure of AIDS. Rio de Janeiro: Relume-Dumará. Terto, Jr V. (1997), Reinventando a Vida: histórias sobre homossexualidade e AIDS no Brasil, 249p. Tese (doutorado em Saúde Coletiva) – Instituto de Medicina Social, Universidade do Estado do Rio de Janeiro, Rio de Janeiro.

15 AIDS and Civil Belonging: Disease Management and Political Change in Thailand and Laos Chris Lyttleton1

Introduction At what media scribes termed a ‘council of war on AIDS’, optimistic reports at the XVI International AIDS Conference 2006 in Toronto noted that for the first time in history AIDS seems to be marking time and the global proportion of people with HIV to have peaked, the roll-out of ARVs is making headway, and global expenditures for AIDS have risen to $8 billion in 2005. Not all trends are as positive: WHO reported earlier that year that its much touted plan to provide ARV access to 3 million infected people had only reached 1.3 million by the end of 2005. Others argue the urgent issue is not numbers but quality of healthcare that accompanies ARV distribution. A recurring theme is that budgets fell woefully short of the UNAIDS estimate of $15 billion required for 2006. Likewise the ongoing battles over affordable ARV provision remain centre stage. As more people receive ARVs, the requirement to move to second-line treatment has become more pressing. While first-line drugs are now produced generically at manageable costs for use in many developing countries, second-line drugs remain patent protected and out-of-reach. Abbot recently dropped the price of Lopinavir/Ritonavir for patients who develop resistance to first-line treatment by roughly 30 per cent. It remains, however, unaffordable in virtually all developing countries. In other words, bare-knuckled contests over equitable treatment that have characterized the history of HIV/AIDS over the past decade remain the order of the day. PLWHA groups and associated civil society coalitions have won tremendous advances. The day Abbott was making its announcement with accompanying fanfare at Toronto the Thai press reported an event given far less global publicity: GlaxoSmithKline abandoned its attempt to seek a Thai patent on its ARV drug Combid. Had it been approved by the Thai Department of Intellectual Property, GlaxoSmithKline would have gained a monopoly on its sale and the drug would have immediately become 255

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financially out-of-reach for most of 50 000 Thai patients currently using a generic version. The withdrawal of Glaxo’s application came a day after demonstrations by 500 members of TNP+, a coalition of Thai people living with HIV/AIDS. August 2006 was indeed a special month for the Thai network of people living with HIV/AIDS (TNP+). They received one of five inaugural ‘redribbon’ awards at Toronto ‘for their outstanding contributions to the frontline response to HIV and AIDS’. Simultaneously, the World Bank unveiled its report ‘The Economics of Effective AIDS Treatment: Evaluating Policy Options for Thailand’ (Revenga et al. 2006), wherein it made no bones about its acclaim for the Thai model of wholehearted engagement in prevention and more recently treatment programmes. While the report cautioned that urgent action is needed to ensure ongoing access to newer medicines through compulsory licensing, it singles out TNP+ as a key determinant in Thailand’s comparative success. To this end, TNP+ is regarded as exemplary in the role civil society can play in working to lessen the damages of AIDS. That a group of people marked in previous years by socially incapacitating stigma and fear have become internationally lauded is remarkable in many ways. The belonging entailed in coalitions of HIV-infected people has taken on a particularly generative form of social subjectivity for those active within PLWHA support groups. It involves assertion of rights at many levels, ranging from local community integration to state management agreements through to national and international policy formulation and implementation frameworks. It does not, however, indicate that future successes are guaranteed – there remain major challenges in how HIV is being addressed in Thailand. It does indicate that forms of belonging orchestrated through bio-political formations centred on HIV-infection have gained a profile and influence in Thailand somewhat more effectively than in many other countries. Across the border in Lao PDR (forthwith Laos), being HIV-infected is not yet a socially mobilizable constituency, it is barely a publicly inhabitable space. Lao HIV spokespeople do not take the global stage to provide that sense of history and activism success found in moving testimonies from HIV-infected people from countries such as Brazil, Uganda and, of course, Thailand against whom so much of the Lao response is measured in terms of both threats and achievements. Comparisons are awkward however. While Thailand and Laos share much common history and cultural heritage as well as long borders, they also have traversed markedly different political and economic trajectories. The scale of infection differs hugely. Thailand is credited with earnest programmes that have reduced new infections markedly. Laos is credited with having so far prevented dramatic spread although there remains much conjecture as to how deliberate this has been.

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Estimates from 2005 show that throughout Thailand in a population of approximately 62 million (Brown et al. 2005):

• 1 090 000 adults have been infected overall • 530 000 adults have died of AIDS • 560 000 adults are currently living with HIV or AIDS. In Laos with a population of roughly 5.5 million, figures differ markedly. In 2005, according to the Lao Centre for HIV/AIDS/STIs:

• 1636 people have tested positive • 584 have died from AIDS • 946 diagnosed AIDS cases. Despite these massive differences in stages and scale of epidemic spread and responses it has fostered, in this chapter I will consider how forms of political, cultural and biological belonging are being reshaped under the presence of HIV in both countries. To this end, civil society initiatives encouraged by international HIV management regimes is a useful rubric to employ. Thailand has one of the more vigorous civil society manifestations in SE Asia. In Laos civil society is nascent. In what follows, I do not intend to replay how civil society fosters comprehensive responses to HIV/AIDS. Instead I wish to reverse the equation and consider that in both countries HIV has a formative role to play in civil society, by showing how the politics of disease management is seeding formations of political change and social collectivities in ways that epidemiologists and social scientists seldom imagined in the early days of AIDS. Such developments underscore the premise that HIV/AIDS is never simply about a virus and its medicalized control; they remind us that disease is always social and the social is always political.

Bio-political belonging and civil society Nguyen’s (2005) notion of ‘therapeutic citizenship’ (see also Chapter 10) moves us beyond determinative models of infected people as simple recipients (or not) of state or NGO orchestrated assistance. Nowadays, HIV infection has discursive entailments well beyond the structuring of meaning evident in earlier stages of global HIV prevention strategies (Lyttleton 2000). Nguyen argues that in the context of HIV/AIDS the biosocial merges with the bio-political, that is to say, being HIV-infected involves social identity negotiations premised on a biological condition that are now enmeshed in global manoeuvers to broaden the distribution and access to ARVs. Thus, a community of those infected constellates through internationalization of treatment regimes and ongoing articulation of market capitalization and

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humanitarian demands this treatment entails. Consistent brinksmanship between profits, advocacy, publicity and lives requires particular forms of worldwide deployment of resources. HIV management is structured by the ways ‘diseased’ bodies become ever more contentious political responsibilities as rights-based imperatives underpin visions of universal health. In turn, practices and knowledges that accompany this global turn are mediated through international, national and local forms of management that bring into being specific forms of subjectivity. The key to Nguyen’s argument is that the person with HIV seeking help through biomedical means embodies certain types of social relations implicit in a ‘therapeutic economy’ that determines the ways in which one’s access to assistance is maximized and controlled (2005: 126). For those infected (and affected), therapeutic citizenship moves beyond national systems of belonging but assimilates those with HIV to a larger mode of identity politics with specific attenuated routines that accompany attempts to seek treatment and help. ‘Therapeutic citizenship is a biological citizenship – a system of claims and ethical projects that arise out of the conjugation of techniques used to govern populations and manage individual bodies’ (Nguyen 2005: 126). ARV distribution is an industry engaging many competing stakeholders and like any capitalist enterprise it has its ultimate impact in individual subjectivities of those caught up in its machinations. Nguyen shows how emerging configurations of personal transformation (confessional technologies), ‘indigenous’ formations of self-governance, and negotiated access to biomedical assistance play themselves out in Burkina Faso. It is not to say that subjectivities become homogeneous as particular biosocial formations are politicized and globalized. In Thailand and Laos the modalities of self-help within support groups differ from elsewhere in important ways as discursive strategies of belonging are embedded within local moral economies and frameworks of meaning (Lyttleton 2004). Nevertheless, at heart is the way in which therapeutic citizenship is essentially stateless (Nguyen 2005: 142) – it becomes a global discourse of belonging that overlies that wrought by national citizenship that might or might not provide adequate assistance for those with HIV/AIDS. In other words, being HIVinfected involves the ‘biomedical production of subjects’ (Nguyen 2005: 132) that cannot be removed from the rapid increase in pharmaceuticalization of treatment in developing countries. International donors are central to this conjunction of claims made on global responsibility. So too are activist groups. The Global Fund insists that civil society groups be part of its coordinating committee mechanisms that prepare proposals for GFATM funding. This builds on principles established by the GIPA (Greater Involvement of People Living with HIV/AIDS) accord formulated in Paris in 1994 which entailed commitment to support ‘full involvement’ of PLWHA in the response to HIV/AIDS. Not that all responses to inclusion of PLWHA in project activities have been positive. A recent study

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on access to prevention services and commodities for PLWHA noted that in many countries GIPA stipulations that PLWHA take a lead role in countryspecific co-ordination of Global Fund projects have been tokenistic at best (International HIV/AIDS Alliance 2005: 33). This view was evident in the Toronto conference when PLWHA spokespeople described often meaningless attempts to include PLWHA representatives in project planning and implementation. Thus frequently PLWHA involvement takes its place alongside or subordinate to NGOs who assist both managerially and financially in mobilization of PLWHA support groups. This tandem grouping has been evident since the early formation of PLWHA support groups constellating primarily for emotional and alternative health therapy. Hierarchical arrangements are often still firmly in place as the collective focus of NGOs and HIV/AIDS support groups shifts towards assistance with ARV provision. Civil society coalitions (PLWHA groups and NGOs) play a key role in the growing primacy of biomedical initiatives amid broader advocacy of health and social needs of those with HIV. While TNP+ has achieved a degree of operational autonomy, it also owes its success to a growing influence of broader civil society in Thailand. In Laos, the Lao Network of People Living with HIV/AIDS (LNP+) is recently formed and has no political voice. This does not mean it has no role to play. However, the formative ways in which bio-politics shapes the biosocial, and with it the impetus for LNP+ to develop its own profile, remains a work in progress. Thailand and Laos find themselves at quite different standpoints as regards the role of civil society in HIV programming. In both cases, therapeutic citizenship is refracted through the underlying synergy of PLWHA and NGO operations as they take place on the ground. It allows a consideration of the summary by Guan (2002) that suggests in socialist countries civil society emerges under conflict dynamics whereas in more democratic countries (arguably Thailand since the mid-1990s) civil society emerges as social capital that is able to be successfully employed by community organizations. In the conflict model, civil society is regarded with suspicion and emerges only in contra-distinction to the state. It seeks to create spaces outside of state functioning; in such scenarios social capital must be created alchemically (out of very little) rather than tapped into. The Global Fund pays no regard to such distinctions. It insists on local organizations being involved. I will thus describe how in Laos the bio-politics of HIV is creating different orientations than it is in Thailand. Nonetheless, in both cases people with HIV are becoming political players in ways unforeseen several years ago.

Thailand civil society and the rise of PLWHA groups Thailand has a vibrant civil society (Guan 2002: 21) and, despite recent attempts by ex-Prime Minster Thaksin to rein them in, local NGOs remain prominent in political machinations. According to Naruemon (2002), NGOs

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have been able to expand their role in Thai civil society in the vacuum created as political parties, trade unions and peasant associations have been unable to increase political participation. Civil society has itself become a heavily utilised term in most government circles, defining a key element in the uneasy transition from authoritarian rule to democracy beginning in the 1980s and taking much greater profile since the 1992 overthrow of the military government.2 While there are still debates over degrees of patronage and elite networks informing Thai politics, NGOs have established a strong public platform through linkages with grassroots activism, and sequentially embellished their image as the popular conscience of Thai civil society. They act as both checks and balances on government power and as a means to assist in grassroots social change (Naruemon 2002: 186). Of most relevance to our concerns here is their association with new social movements; NGOs are considered to enlarge political space available to local groups and to diminish entrenched political hierarchies and their power. As Pongpaichit Pasuk notes: ‘There is growing intellectual support for a concept of civil society which challenges old hierarchies and exclusions . . . battles which are fought by demonstrations, protests, networking and attacks on the dominant cultural discourse’ (1999: 16–17). Central to these manoeuvres is the fundamental focus on a growing notion of individual and collective rights, which we can see crystallized in the growing influence of PLWHA groups’ demands for the right to health. The rise of PLWHA groups in Thailand is definitively a new social movement (Kumphitak et al. 2004). We see this in the moral space support groups have reclaimed for those infected with HIV; we see it also in their advocacy during a number of civil demonstrations. In the past HIV support groups were predominantly associated with NGO assistance (Wiput et al. 1999, Del Casino 2001). Nowadays PLWHA groups, in particular the leadership provided by TNP+, receive recognition in their own right. In large part this growing public influence stems from their ability to effect fundamental policy changes, often through mass mobilization. It also stems from the crucial role they play in what the World Bank calls public ‘augmentation’ practices, meaning that people with HIV/AIDS have become central players in distribution and access to pharmaceutical treatment. Starting from a position of overt stigma and discrimination the growing presence of HIV/AIDS support groups in Thailand has allowed people with HIV to reconstitute the public and moral space provided them through processes of transformation and visible orientation to social good. It is particularly significant that HIV/AIDS has come to mark one of the more successful community coalitions in the history of social change in Thailand. Through presentation of a public face to HIV, support groups promoted the normalization of being HIV positive through solidarity and the social platform for public disclosure of HIV status (Usa et al. 2000). During the 1990s, activities within PLWHA groups were primarily geared to income

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generation, accessing treatments and sharing moral support and knowledge about medical and self-care techniques. These groups also challenged social discrimination, and the anxiety, fear, guilt, sadness, ignorance, blame and anger those with HIV confront, by offering a very specific way of being publicly positive that built on narratives of social redemption (Lyttleton 2004). In early 2002 there were just over 400 groups throughout the country, and well over half (250) were in the upper northern provinces. This is a product of both the relatively advanced stages of the epidemic compared to other regions and the productive relationships between NGOs, PLWHA leaders and state bodies evident in the northern provinces. Since 2002 the number of groups has doubled.3 In 2006 there were over 900 groups with more than 20 000 members. Most growth has taken place in central and northeastern regions, due largely to ARV roll-out and the role of support groups in this distribution. Accompanying growth in group numbers, according to long-term group leaders, the tenor and dynamics of PLWHA groups has also changed notably since the arrival of affordable ARVs. In the late 1990s the Ministry of Public Health (MOPH) began to provide triple-therapy to people with HIV/AIDS but uptake was minimal due to prohibitive cost of medicines. In 2002 the National Access to Antiretroviral Program for PLWHA (NAPHA) made ARVs cheaply available and access expanded throughout the country. According to the World Bank more than 80 per cent of those living with AIDS had access to public medical treatment by the end of 2004 (Revenga et al. 2006: xxiii). By March 2006 more than 80 000 HIV-infected were receiving ARVs in Thailand. In other words, it is not only previous prevention programmes that gain Thailand international acclaim. So too its treatment programme is measuring tremendous success. It could not have been achieved without the steadfast commitment of people with HIV themselves coupled with ways in which human rights have gained increased international legitimacy through rubrics of health management. These advances came about through legal action of civil society groups: ACCESS, MSF, the Thai Foundation for Consumers and notably the TNP+. In the late 1990s concern that monopoly patent laws maintained a prohibitively high cost for HIV/AIDS drugs led to a combined push for the Thai Department of Intellectual Property to override patents and allow production of generic medicines via compulsory licensing. This legal action was the first time that ‘people infected with HIV braved stigmatization to stage public demonstrations and proved to be a watershed event in terms of awareness and self confidence for people with HIV/AIDS’ (Ford et al. 2004: 560). HIV/AIDS groups maintained a prominent role in negotiations with Thai and US governments and when compulsory licensing was refused in 2000, a lawsuit was filed at both Thai and international trade courts. A major victory was gained in 2002 when two HIV-infected Thai (and ACCESS foundation) legally forced Bristol-Myers Squibb to retract a patent on Didanosine (Kumphitak et al. 2004: 2). The court noted that ‘lack of access to medicines

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due to high price prejudices the human rights of patients to proper medical treatment’ (Ford et al. 2004: 561). This verdict allowed MOPH to produce generic drugs without breaking TRIPS obligations and meant the national treatment programme could expand rapidly. The success of TNP+ political forays did not stop with production of cheaper drugs. In 2005 the Thai government bowed to pressure to include ARVs within a subsidized health scheme. This universal coverage scheme (UCS), established in 2001, entitled patients to hospital care for 30 baht (approximately 75 cents) per visit regardless of ailment.4 It meant a majority of those with HIV/AIDS could access ARVs when necessary at minimal cost. At the same time, it created the programmatic logic and practical need for increased involvement of PLWHA groups in ARV distribution.

Conflicting roles While technically someone infected with HIV does not have to join a support group to receive ARVs, there are many pressures to do so and this has contributed substantially to the growth in hospital-based support groups throughout Thailand. District hospitals typically organize ARV distribution and CD4 check-ups on a specific day each month.5 There are also various protocols for joining NAPHA that require coordinated management such as contractual agreements ensuring adherence to drug regimens and ongoing training and awareness sessions. To successfully manage these meetings and improve the quality of healthcare provision surrounding ARV uptake, GFATM supports an ongoing collaboration between PLWHA volunteers and district level health officials. Now, in district hospitals nationwide PLWHA volunteers are trained in ARV provision and adherence requirements. This process is not straightforward on any number of levels – as the World Bank notes, ‘for this PHA role to be sustainable, long-term funding and ongoing technical support will be essential, and the government will need to facilitate liaison between PHA representatives and hospitals’ (Revenga et al. 2006: 60). To date, liaison has been remarkably effective in many hospitals and PLWHA volunteers have become central to the success of expanded ARV uptake. Volunteers act as facilitators at monthly meetings and assist with logistic demands of administering drugs. They act as key resource people in the initial preparation of new patients about to enter ARV regimen. They provide counselling and training. Most importantly, if a patient does not come to the monthly meeting or omits to take the ARVs for more than seven days, he or she automatically relinquishes any right to ongoing drug provision. PLWHA volunteers are supposed to ensure these details are adequately understood. They provide crucial follow-up counselling and home-visits to assist with side effects and adherence difficulties. At the policy and practical level, there is substantial concern over compliance; not simply for the health of the individual but for the emergence of resistant forms of viral infection.

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PLWHA volunteers are now enlisted in the state’s programme of management of infected bodies arguably for their own good but undeniably also for the state of the nation’s health. It has also meant that PLWHA groups face ongoing challenges in their role as social advocates. The generative conjunction of medicalized assistance and a changing civil society have created ongoing momentum for TNP+ to lay claim to rights entailed in the therapeutic economy of global ARV programmes. On the one hand, PLWHA members played a key role in creating possibility of treatment; and PLWHA volunteers have since become essential to national ARV provision. On the other hand, advocacy successes have lead to ongoing commitment from PLWHA leadership to campaign for progressive social change. A further role for volunteers (and other group members) is ongoing political agitation as they continue to advocate for increased access to excluded populations, manoeuvres that place them in direct confrontation with the state. In 2006 many thousand PLWHA members congregated with thousands of others from various sectors to voice their concern over proposed FTA between Thailand and the US that would impact on agricultural commodity prices and the cost of HIV medications. Articles published in TNP+ newsletters underline the increased effectiveness of coordination with diverse social forums in political advocacy.6 Other organizations such as the Thai AIDS Treatment Action Group build on the broad-based support within the PLWHA movement to concentrate their focus specifically on issues of drug availability. The social responsibilities taken on by people with HIV therefore proceed in two divergent directions: one (funded by NGO or Global Fund assistance) is to help ‘friends’ access and adhere to medical treatment (as well as other broad-based initiatives for PLWHA). They thereby expand membership in a global therapeutic community. The other, for which they wish to remain free from state control, is to participate in public action against state controls and policies – to expand the rights and political weight of that therapeutic community. In other words, PLWHA have become a prominent and united political presence in public forums, a role that volunteers to whom I have spoken see as fundamental to their identity as PLWHA spokespeople. I have described elsewhere contradictions in their designated roles as both advocates against and agents for the state (Lyttleton et al. 2007). PLWHA groups must now juggle the dual demands of assisting the state to expand ARV distribution and challenging restrictive policies. As ARVs are now seen as central to physical and social normality, the sense of responsibility established by an earlier generation of PLWHA initiatives within local communities is waning and strategies to reduce dependency on drug therapy receive less attention. This trend has led some Thai researchers to cite a re-medicalization of HIV/AIDS. These days ARVs foster the normalization of HIV status through medical means that in the past PLWHA groups had

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to battle for through social manoeuvers geared to emotional and psychological support at the community level. Despite such shortcomings, clearly there is an upside as many people now consider longevity in ways previously unimagined. And as Revenga et al. note: The change in PHAs’ involvement in health care from receiver to coprovider has led to improved acceptance of and support for PHAs within the health care system. Increased control over their health has also brought benefits for PHAs in terms of self-image, confidence, and dignity. (2006: 36) In turn, increased political voice and confidence spurred by renewed engagement in the social order has created a focus on new targets for an expanded belonging. Whereas previously PLWHA collectives were oriented to local community acceptance, a growing mood of social empowerment has now prompted activism against broader forces of political and moral exclusion. A key initiative begun in 2006 by the TNP+ is to address structures of political exclusion that deprive those without full Thai citizenship from access to subsidized medical treatment for HIV/AIDS. In Thailand there are over a million ethnic minorities mostly living in mountainous border regions.7 ‘Despite being born in Thailand, almost half of the country’s hilltribe people lack Thai citizenship, and are unable to vote, buy land, seek legal employment, or travel freely’ (Lynch 2004). As moves by the government to address this situation have slowly begun, in the meantime lack of citizenship has lead to the creation of a disadvantaged underclass where access to education and government services is limited. Many seek work in circumstances ripe for exploitation. Many become HIV infected. Thus even as the notion of therapeutic citizenship might be essentially stateless, the rights of entry are seldom free. In Thailand those without full national citizenship cannot receive subsidized medical treatment.8 Numerous other cultural and material obstacles also adhere, but at heart is the ability of the infected minority peoples to receive equitable assistance. Very few from ethnic minority groups join PLWHA support groups (Lyttleton et al. 2007). Lack of citizenship has prompted high levels of vulnerability; it also denies help when infection is confirmed. In this context the TNP+ recently began to make lists of those with HIV/AIDS in minority groups who are excluded from ARV provision. It remains unclear what leverage they will muster to amend this situation, but they intend to try. Gaining Thai citizenship remains a highly vexed issue and subject to protracted legal wrangles centred in a politics of ‘otherness’. It is notable that the World Bank report does not mention ethnic groups and insists combined insurance schemes for ARV provision reach nearly 100 per cent of the population (Revenga et al. 2006: 38). This reflects a national mindset that commonly relegates ethnic

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minority groups below the radar. It is notable that TNP+ now wishes to challenge processes of social marginalization that move well beyond the presence of a virus.

The power to change Guan (2002: 5) suggests that civil society in (pro)-democratic countries builds out of existing social capital in community groups. In this perspective, social capital born of informal associations promotes networks that help to maintain enlightened channels of political change, making the state (somewhat) responsive to needs of its citizenry. This view is commonplace. Many recent development polices from the World Bank down suggest social cohesion implied by reservoirs of social capital will bring improved social progress. As Fukuyama notes, social capital fosters efficiency and co-operation: Social capital can be defined simply as an instantiated set of informal values or norms shared among members of a group that permits them to co-operate with one another. If members of a group come to expect that others will behave reliably and honestly, then they will come to trust one another. Trust acts like a lubricant that makes any group or organisation run more efficiently. . . . The norms that produce social capital must include virtues like truth telling, meeting obligations and reciprocity. (Fukuyama 2000: 98, 99) The achievements of TNP+ would indicate that PLWHA groups have collectively built levels of social capital. Much of the history of PLWHA groups is predicated on providing members with a means by which they come to terms with a socially disadvantaged condition, where HIV carriers are widely regarded as a form of social and moral pollution, and turn this into a form of belonging and empowerment. Many PLWHA members cite joining PLWHA groups as a profound transformation (Tanabe 1999) and the primary means for re-establishing social acceptance (Lyttleton 2004: 21). People with HIV regain a sense of social identity through communal solidarity within support groups and the social capital this implies – characterized by the trust, honesty and reciprocity evident in the open and forthright sharing about living with HIV (helping each other). But it can be argued further that achieving a degree of normalization – that is to say, social redemption – in turn promotes community integration and defuses stigma as their humanity resurfaces through group activities (often also oriented to helping others). Importantly, the process does not stop here. This social capital is nowadays being used to broaden their influence within a political realm. TNP+ is gaining social profile and greater influence through the combined symbolic weight of a number of convergent characteristics. Taken

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together, the scale of infection in Thailand, the availability of drugs and the normalization this represents, regular public meetings, a vital role in state functioning and collaboration with other public forums, collectively promote the social glue and thereby social capital within the PLWHA groups and their networks in ways unimaginable several years ago. After tremendous groundwork established over the years by charismatic spokespeople, PLWHA networks have become stronger for the experience of having moved their members beyond a maligned condition. Based on a profound cultural logic of redemption, the power of stigma can at times deliver greater legitimacy once it is traversed. TNP+ is using this capital in a number of directions. As mentioned, one of these is political advocacy for marginalized populations. Others include an ongoing need for reproductive health knowledge as HIV becomes further domesticated in Thai society. Of course stigma has not gone, and there are regular conflicts between the dual roles the TNP+ is charting. In some contexts local authorities in charge of distributing welfare funds voice disapproval of activism nowadays associated with PLWHA groups. Such tensions notwithstanding, TNP+ is creating new avenues of influence that lie directly in the power gained from successful integration within the biosocial order.

LNP+ and civil manoeuvres in Laos In Laos the situation is very different, the history of positive people’s networks much shorter and repositories of social capital less apparent. Laos is now best termed post-socialist, that is, an economically and socially capitalist state managed by a one-party regime that has ‘no intention of allowing liberaldemocratic reforms’ and which continues to insist on its ‘exclusive leading role and crushes signs of political dissidence’(Evans 2003: 2). In this envisioning, Laos still abides by its overriding totalitarian mission wherein the state’s responsibility is ‘to organize and transform all human behaviour in the service of a higher goal such as creating the ‘new socialist man’ ” (Evans 2003: 3). To pursue this goal within a growing climate of economic liberalism, Laos relies heavily on international aid: foreign loans and investment constitute 20 per cent of GDP and grants a further 12 per cent. Over $20 million per year is channelled through roughly 100 international NGOs.9 The number of NGOs has doubled from 53 in 1997 (Lilao 2005: 39). The NGO sector is completely structured by international management and funding frameworks. There are no local NGOs; more often than not when the Lao government refers to civil society it cites mass organizations (Lao Women’s Union, Lao Youth Union, etc.). This is consistent with the state’s control over a sector it regards as potentially troublesome – that is, civil congregations and challenges to state dominance that might be fostered by local NGOs. As Guan suggests, civil society in socialist regimes must chisel their space from within the existing political landscape; to date in Laos this has been

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akin to scraping at rock with a blunt instrument. Instead the international NGOs have shouldered the role of representing a token nod to non-state community mobilization. As Evans notes: ‘Within these organizations, Lao employees are exposed to ideas, debates and literature that would normally have been unavailable to them. In this sense the IGOs [intergovernmental organizations] and NGOs have created a kind of incipient civil society’ (2004: 29). Their role should not be overplayed. International NGOs are hugely sensitive to their vulnerability to expulsion and do not directly advocate for overt social reform. Nevertheless, the situation is changing and the current emphasis on governance and conditionality in loans from bilateral and multilateral aid donors including GFATM has made the Lao government more sensitive to demands for civil society institutions. Coupled with pressure from ASEAN members to allow degrees of political freedom, there has recently been a nod to a sanctioned form of local organization: the term NGO is not used but instead non-profit associations (NPAs). Since 2003, a mechanism for establishing formal associations began with the inauguration of LUSEA (the Lao Union of Science and Engineering Associations) an official vetting body that oversees the constitution of these bodies. NPAs must be registered with the state and receive approval for their constitution, rules and regulations and five-year strategic plan of action. In other words, insofar as the state still retains direct control of their activities they only give the appearance of being civil society organizations, and in some instances appear to be more an opportunity for retired bureaucrats to provide ongoing services to the country and convenient channels for donor funds. At the same time, they undeniably represent a significant new direction. By late 2006, 18 associations had acquired the necessary government approval, with three more awaiting certification. Some INGOs are in the process of establishing splinter groups of local associations who will work in local participatory development. It remains clear, however, that no criticism of government will be promoted (Bramwell 2006). In 2005 the LNP+ requested formal recognition as a non-profit association, and is still awaiting final approval. This marks a significant step in its evolution as a coalition of infected people with a public profile and a mandate to bring public attention to issues related to the presence of HIV. It signals a further expansion of global therapeutic citizenship into previously carefully-guarded sociopolitical terrain. But while the template might indeed have global dimensions, there remain significant constraints on what this idealized citizenship entails. Since their inception in 2003, LNP+ has operated within the umbrella of the Lao Red Cross, a mass organization that has chapters in every province. In a direct reference to the internationalization of such bodies, its 2005 annual report notes that LNP+ was established ‘following the principles of Greater Involvement of PLWHA (GIPA) outlined by UNAIDS and endorsed during the UN General Assembly Special Meeting on HIV/AIDS’. In globally

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characteristic fashion, LNP+ indicates its mission is to enhance the capacity of local communities affected by HIV to participate in education, care and support and community awareness programmes. Following training assistance from APN+ (Asia-Pacific Positive Peoples Network) and TNP+, in late 2004 the Lao network developed a terms of reference for duties and activities and now includes representatives from the seven provinces that have PLWHA support groups (Laos has 16 provinces). The number of publicly disclosed people with HIV is small in Laos. In mid2006, 329 positive people belong to groups in these seven provinces. This represents a reasonable proportion of the known number of HIV-infected people, but overall it is a small number of constituents to mobilize any sort of social presence. Activities in each of the groups are geared to assistance with health issues and in the larger provinces some NGO supported income-generation schemes. Until recently ARVs have only been available in Savannakhet province largely through clinical and financial support from MSF. In mid-2006 ARV provision also began in the capital of Vientiane. For several years a few PLWHA in northern Laos have crossed the border to access treatment in Thailand. Like many developing countries who first establish support groups, NGOassisted support groups focus on monthly sessions of emotional exchange and assistance with everyday health difficulties. And even as these identitybased coalitions might be linked to globalizing forms of belonging spearheaded by international AIDS agencies, it would be wrong to see them as cardboard copy replicas of support groups in other countries, in particular their ability to encourage social reform. Nonetheless, baseline activities proceed within a standard international model: PLWHA representatives in LNP+ have been trained in project management, proposal writing and the tenets of working partnerships with NGOs and donor bodies. They have been trained in OI/ARV medical knowledge, and they have been alerted to the role they have to play in advocacy for the benefit of those stigmatized by HIV infection. To foster such initiatives and operate more definitively as members of a global coalition, LNP+ wishes to become an independent association, structurally apart from the Lao Red Cross. The chief intent is to operate as a legitimate body representing the interests of infected people who might, in Nguyen’s terms, acquire more meaningful therapeutic citizenship. To this end, the network wishes to help the fledgling support groups and to do so more effectively they must gain the operational profile required by donor bodies, in particular GFATM. While this may well afford more international support, it does not mean they will be able to lobby for greater assistance nationally. At present, advocacy means strategies to reduce stigma primarily at the community level rather than argue for policy changes in budget allocation or treatment programmes. Not all LNP+ activities are completely depoliticized, but almost. A key initiative is to gain representation

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on decision-making bodies. Thus as an independent body – following GIPA principles – the LNP+ will be able to provide representation for PLWHA groups on committees and working groups. But as representatives indicated, such advances still fall a long way short of gaining adequate voice, despite pro-forma NGO training in public speaking. One informant described the presence of PLWHA at meetings as being like a flower on the table, that is, required to complete the ensemble but with no expectation of any substantive contribution, instead still being told what to say and how to say it. Thus representatives are realistic that becoming an association is a crucial first step, but broader advances in terms of PLWHA rights cannot be taken for granted. It will still require the assistance of sympathetic NGOs rather than overt social or policy change. Insofar as civil society is locally perceived as problematic due to its confrontational dynamics, the LNP+ is clear it cannot operate in such modalities. There will be no strident demands for cheaper drugs, no talk of equitable rights to treatment, no mention of joining with other people’s forums (unless outside national borders) and obviously no possibility of social agitation and public demonstration. To date, there have been limited opportunities for PLWHA volunteers to assist with ARV scale-up as treatment programmes have received virtually no government funding.10 Despite such constraints, the growing profile of LNP+ creates the possibility of new social formations that have an impact beyond providing a visible constituency. The social and globally recognized presence of LNP+ becomes increasingly hard to ignore in the growing international surveillance of state management of biological and social distress. The symbolic weight of globalized therapeutic citizenship creates its own gravity and in turn leverage. The fact that LNP+ now intends to stand alongside the Community and Environmental Development Association, and Association of Lao Architects and Civil Engineers and other such bodies is highly significant. It means HIV positive people are in the first line of independent constitutive bodies in Laos. They do not yet have a strong voice but the very fact that carrying a virus gives them a right to advance an identity-based coalition and record its needs and demands bespeaks the growing room that identity politics is creating in Laos. It is a first step, but one that no other pathology has created. We know that HIV has been treated like no other disease, much to the distress of many who are affected by its presence. But like no other disease it is also creating political leverage, in part through recognition that HIV requires global responses and substantial financial help, in part because marginalized groups can increasingly claim health as one of a rights-based development’s non-negotiable deliverables. In turn this creates an opening for civil society, not in direct conflict with the state but rather through the subtle and creeping politics of AIDS and its embodied presence.

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Conclusion Political power has often grown from social, economic or cultural difference – most often when advantage is conferred by access to social, cultural and economic resources. But sometimes difference is a resource in its own right, wherein distinction is used as a platform to argue for equality, to render injustice intolerable and to seek redress for the underlying discrimination that hierarchizes difference. Such achievements are by no means guaranteed and the process of gaining them is long and hard as attested by all those who advocate for marginalized peoples. In the past having HIV immediately relegated most people to a condition of disadvantage; it still occurs widely today. But the growing public profile of a global community of HIV-infected people is making advances. In Thailand, these advances have been significant and the momentum conferred by the ability to visibly change the social and therapeutic landscape for those with HIV/AIDS has lead TNP+ to address an ever wider range of social inequalities. In Laos, such steps are nascent and take place in a climate where individual rights are enshrined in state-based constitutive mechanisms with no civil society support for their maintenance or amendment. This is not always bad; ethnic minority groups in Laos ostensibly suffer less legal discrimination than in Thailand. It does mean, however, that if changes are needed, the fledgling LNP+ is not yet in a position to argue for them. But this is changing. The almost universal focus on governance within Western donor circles brings with it template managerialism that is not necessarily conducive to community empowerment nor cultural integrity (Mosse 2005). Rights-based development has become increasingly leveraged by supposed liberal democratic reforms (sometimes militarily enforced) rather than broader attention to everyday livelihood choices. All too often Bretton Woods-style conditionality has made life much worse for those with HIV/AIDS. But one must give credit for a constant repetition of need for civil society in certain forums. There is a direct connection between GFATM funding mechanisms and the growing power of positive people’s networks. I do not wish to overstate the case. Numerous obstacles and shortcomings remain. But in both Thailand and Laos the presence of GFATM and its links with civil society have been productive. In Thailand, financial support has been instrumental in providing the means for PLWHA to work with government. In turn, their increasing role as state agents has only increased their ability to operate as non-state agents. In Laos, so far, it is more the promise of support from donor bodies rather than its actual delivery that is wreaking subtle change. It has provided the impetus for LNP+ to become an autonomous body, a rare event in Laos. In so doing, those with HIV are creating a forum for public exposure that will potentially follow their cross-border counterparts. Not in terms of radical social mobilization, this is still a bridge too far, but in terms of creating the

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potential for a disenfranchised group to gain some reservoir of social capital as they bring perceived benefits to Lao citizens with HIV/AIDS. Working for the common good of those most in need (i.e. for those suffering from the most stigmatized disease in recent times) is a moral endeavour that will in turn generate levels of acceptance that solidify LNP+’s social platform. At present, making the platform steady still needs careful assistance from international NGOs. In Thailand, the World Bank report commented that ‘[PLWHA] partnership with other national groups and international organizations has been successful because of an understanding among all involved that the relationship is one of equals’ (Revenga et al. 2006: 60). This is a large claim that doubtless does not hold in every instance. However it does point to the social and political levelling effect that therapeutic citizenship in its more positive terms connotes. Global citizens defined by their infection; at this scale, in-country social hierarchies are under more pressure to abide by global human rights adjudications. This is becoming obvious in Thailand and evident nonetheless in Laos. As such, the conjunction of the biosocial and the bio-political are generating change in both countries (and worldwide). Civil society responses are markedly different but, in both Laos and Thailand, fundamental to the way the moral, social and political economy is coming to terms with having to deal with pervasive threats to its citizen body.

Notes 1. I am enormously grateful to members of TNP+ and LNP+ who shared their time, energy, knowledge and experience with me. AIDSNET in Chiang Mai provided valuable help, as did various NGO staff in Laos. Earlier research that forms part of this chapter was assisted by the Social Research Institute at Chiang Mai University. The research was funded by Macquarie University. 2. In September 2006, military rule again entered the Thai political landscape with the overthrow of the Thaksin government. 3. In the course of their growth, groups have classified themselves into stratified networks organized at the sub-district, district, provincial, zone, and region. 4. This scheme was dismantled in early 2007 by the interim military-backed government and replaced by a policy of free provision of medical care. 5. ARVs are distributed in monthly amounts allowing a degree of compliance monitoring. 6. See for example: ‘Social and Political Transformation: increasing people’s power’ Peuan O April–June 2006: 5. 7. A situation further complicated by 2–3 million migrants entering Thailand from surrounding countries in the last 15 years. 8. Alongside the promise of free medical care, the military-backed government has also declared HIV/AIDS treatment will be offered to all illegal migrants and highlanders without full citizenship. To what extent this is practised remains to be seen.

272 The Politics of AIDS 9. The NGO Co-ordination Committee lists 73 registered INGOs; the Ministry of Foreign Affairs counts more than 100 indicating additional small NGOs which have not yet established an official Memorandum of Understanding. 10. A 2006 application to GFATM included ARV provision for the first time.

References Brown, Tim, Wiwat Peerapatanapokin and Emiko Masaki (2005), Thailand Situation Update, Integrated Analysis and Advocacy (A2) Meeting 18 April, Bangkok. Bramwell, L. (2006), PRSPs and Civil Society Participation in Lao PDR. Paper presented at ANGOC Round Table Siem Reap 23–26 May. Del Casino, V. (2001), ‘Healthier Geographies: Mediating the gaps between the needs of people living with HIV and AIDS and health care in Chiang Mai, Thailand’, Professional Geographer 53(3): 407–21. Evans, G. (2003), The Politics of Ritual and Remembrance: Laos since 1975 Chiang Mai: Silkworm Press. Evans, G. (2004), ‘Laos Situation Analysis and Trend Assessment’, Writenet: UNHCR. Ford, N., Wilson, D., Bunjumnong, O. and Angerer, T. (2004), ‘The role of civil society in protecting public health over commercial interests: lessons from Thailand’, Lancet 363: 560–3. Fukuyama, F. (2000), ‘Social Capital’ in Huntington and Lawrence (eds) Culture Matters: How Values Shape Human Progress. New York: Basic Books, pp. 98–111. Guan, L.H. (2002), ‘Introduction’, in Guan G.H. (ed.) Civil Society in SE Asia. Singapore: ISEAS. International HIV/AIDS Alliance (2005), Identification and Analysis of Access to Prevention Services and Commodities for People Living with HIV/AIDS and Effect on Positive Prevention, unpublished review. Kumphitak, A., Kasi-Sedapan, S., Wilson, D., Ford, N., Adpoon, P., Kaetkaew, S., Praemchaiporn, J., Sae-Lim, A., Tapa, S., Teemanka, S., Tienudom, N., Upakaew, K. (2004), Involvement of people living with HIV/AIDS in treatment preparedness in Thailand. Geneva: WHO. Lilao Bouapao (2005), Rural Development in Lao PDR. Chiang Mai: Chiang Mai University. Lynch, M. (2004), Lives on Hold: the Human Cost of Statelessness, Washington: Refugees International. Lyttleton, C. (2004), ‘Fleeing the Fire’, Medical Anthropology 23: 1–40. Lyttleton, C. (2000), Endangered relations: Negotiating Sex and AIDS in Thailand. Reading: Harwood Academic Press. Lyttleton C., Beesey, A. and Malee SithiKriengKrai (2007), ‘Expanding community through provision of ARVs in Thailand’, AIDS Care (in press). Mosse, D. (2005), The AID Effect. Pluto Press. Naruemon Thabchumpon (2002), ‘NGOs and Grassroots Participation in the Political Reform Process’, in McCargo (ed.) Reforming Thai Politics. Singapore: ISEAS. Nguyen, V.-K. (2005), ‘Antiretroviral Globalism, Biopolitics and Therapeutic Citizenship’, in Ong, A and Collier S. (eds) Global Assemblages: Technology, Politics and Ethics as Anthropological Problems. MA: Blackwell Publishing, pp. 124–44. Pasuk Pongpaichit (1999), Civilising the State: State Civil Society and Politics in Thailand. Amsterdam: CASA.

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Revenga A., Over, M., Masaki, E., Peerapatapkin, W., Gold, J., Tangcharoensathien, V. and Thanprasertsauk, S. (2006), The Economics of Effective AIDS Treatment: Evaluating Policy Options for Thailand. Washington: World Bank. Tanabe, S. (1999), Practice and Self-governance: HIV/AIDS self-help groups in Northern Thailand, Paper presented at 7th International Thai Studies Conference, Amsterdam, 3–7 July. Usa Duongsa, Guntamala, L., Chanjaroen, K., Natpratan, P., Nak-Klinkoon, S., Wuthi, S., Dechaboon, P., Piyajitpirat, S., Suwanpatthana, N. and Phusahat, A. (2000), Study report on Development of and Lessons learned from Positive People’s Groups and Network (the case of the upper North, Thailand). UNAIDS: Bangkok. Wiput Wooncharoen, Chansithat na Ayuthaya, P., Kaewnakron, W., Tiawkun. W. and Tantininitirakul, S. (1999), Advances in Controlling AIDS in Thailand (in Thai) Bangkok: Health Research Institute.

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16 Governing AIDS: Globalization, the State and Civil Society Håkan Thörn and Maj-Lis Follér

Governance and the securitization of the AIDS issue The process of globalization has encouraged social scientists to re-define the concept of politics, making it less state-centred. In connection with this, the concept of ‘governance’ has emerged as a mode of re-thinking politics – in a national as well as in a global context. During the last decade, a number of works in the social sciences, including analyses of AIDS politics in a global context (e.g. Jones 2005; Söderholm 1997), have used the concept of governance in order to grasp new political developments. ‘Governance’ refers to a set of perspectives rather than to a coherent theory (c.f. Rhodes 2000); generally it emphasizes social and political steering through self-organizing interorganizational networks, of which public, private and voluntary organizations can be part. As an analytical approach, ‘governance’ often focuses on boundaries, empirically investigating the transformation of boundaries between the state, the market and civil society. Looking at the relations between global politics and local government from the perspective of governance, and particularly so from the approach of global governance (Held and Koenig-Archibugi 2005), local politics should not be looked upon as a level that, according to the conventional hierarchical model, per definition is subsumed to the national level of politics. Seen in this perspective, local AIDS politics may thus in some cases have a wider scope than that of the state, as actors may engage in regional alliances across borders, and directly interact with supra-national institutions, such as UNAIDS or the World Bank, thus bypassing the state. ‘Governance’ is however an increasingly popular concept not just in the social sciences, but also in the context of policy making – and particularly so in global policy networks focusing on aid to countries in the Global South, involving institutions and organizations such as WHO, UNAIDS, and the World Bank. Altman (Chapter 2) and Jones and Koffeld (Chapter 7) mention the World Bank’s ‘governance index’, with which the efficiency of various policies is measured and compared. While aid discourses often define the 277

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operations of global policy networks in terms of ‘good governance’ and ‘partnership’, there are good reasons for a critical analysis of these discourses – and of the power relations they may (mis-)represent. To sum up, the relevance of the concept of governance for an analysis of the politics of AIDS is that it highlights the point that relations between national, local, regional and supranational political levels are objects of negotiations and are partly determined by the contexts of specific political issues. Considering the fact that some researchers have suggested that governance de-politicizes world politics in general (through establishing a technocratic political discourse), and particularly so in the case of development politics ( Jones 2005, see also Egerö and Hammarskjöld’s critique of the use of the concept in this context in Chapter 5), we think that the concept of governance should be used in a critical and cautious way. This was precisely Jones and Koffeld’s critical assessment of the concept of governance in Chapter 7, pointing to the fact that it has become catch-all-phrase in empty globe-talk – ‘the kind of polite and non-threatening epithet that makes for easy conversation in any gathering of African and international leaders’ (p. 97), they quote Booth (2005). Further, it has been adopted by a number of ideological missions and political projects, as for example it has been used both to enhance neo-liberalism and as a tool to make policy implementation more effective. Nevertheless, Jones and Koffeld argue that ‘governance’ may be used as an analytical concept in order to understand the steering of social processes through various forms of networks. Drawing on works by Rhodes (2000), Kjaer (2004) and Hydén (1992), they understand governance as the rules (in the sense of structures) and regulations that influence any attempt to define and solve social problems. Looking at governance in this way, Jones and Koffeld also emphasized that research on AIDS and governance has, at least until recently, been practically non-existent. In this sense, the chapters in this book that relate to governance and AIDS point out directions for an emerging and important field of research. While Jones and Koffeld look at the effect of certain forms of governance on AIDS, in Chapter 3 Tony Barnett emphasized that an additional urgent question regards the effect of AIDS on governance. The chapter by Nana K. Poku (4) contributed to such an analysis, indicating that AIDS mortality has seriously undermined the capacity for governance in Africa. The rise of a discourse that defines AIDS as a security issue, a theme that was in focus both in Barnett’s and in Altman’s contributions to this volume, may also be seen in connection with governance; it represents an attempt to reframe AIDS as a political issue in a global context. More specifically, the original intention of the definition of AIDS as a security issue, which has roots both in the UN (where it was related to the broader concept of ‘human security’, developed by the United Nations Development Program) and in the CIA, was according to Altman to broaden the AIDS issue – in opposition to a more narrow definition of AIDS as a health issue – ‘born of a political desire

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to place it higher on the political agenda as much as through an analysis of its impact on global stability’ (p. 7). The security discourse (on AIDS) could thus be seen as an attempt to establish a form of global AIDS governance, born out of a fear of what AIDS might do to global governance more generally. While both Altman and Barnett also see political possibilities in defining AIDS as a security issue, they nevertheless arrive at different conclusions regarding in what sense, and on which level of action, security may be a productive political concept. Barnett is sceptical to an approach that defines AIDS as a threat to ‘national security’ and argues that ‘the real security issue’ in a globalized world ‘is the stance of the external world to those countries with serious current HIV epidemics and looming AIDS epidemics’ (p. 43). Altman on the other hand emphasizes the relevance of a security approach on a national level and argues that the concept of ‘human security’ may be used to challenge an established discourse about ‘failed states’. While it is assumed that ‘failed states’ equals ‘weak states’, Altman suggests that we instead should talk about ‘state failure’, implying that not just weak states but also strong states can fail; and particularly so when it comes to defending individual security; ‘strong states might threaten security more than weak’ (p. 24). These different views once again point to the fact that the role of the nation state in a globalized world is a hotly debated issue.

The state of the state in the context of globalization What are the possibilities of the nation state to fight AIDS and all its social causes and consequences? Which are the appropriate strategies for state action? Are democratic states more likely to provide effective responses to AIDS than authoritarian states? These are questions not only relevant for the politics of AIDS but for any contemporary politics. But what does the case of AIDS, which in many countries in the world (and indeed in a global perspective) is one of the most urgent political issues, tell us about questions regarding the status of the nation state in the context of globalization? Judging from the contributions in this volume, the state still matters, to quote Altman, ‘if not only because states control resources and environments that make international and communal responses possible’ (p. 21). It is also because they want to emphasize the importance of the state’s political capacity that Egerö and Hammarskjöld prefer the concept of ‘governability’ rather than that of ‘governance’, which they argue is too much associated with World Bank language and policies. It is however also clearly evident from the contributions in this book that any generalizing questions about ‘the power of the nation state’ are mistaken, because states have very different power resources. To a large extent, the constraints and possibilities for state action are dependent on overlapping external factors; the position of a particular state in the international inter-state hierarchy (in turn dependent on its position in the history of colonialism and

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imperialism), its capacity to attract and/or resist transnational capital and its relations to supra-national bodies. There is however no simple deterministic logic at play here; and although external dependency is undoubtedly important, a substantial amount of research has also shown that internal factors are crucial in order to understand the political capacity of any given nation state. Such factors are economical, political and cultural relations and developments, such as relations between the state and civil society. During the last decades we have seen shifting conjunctures with regard to theories on the role of national politics in relation to an international or global politics, in which concepts such as modernization, development/under-development, dependency/interdependency and liberalization have appeared (and disappeared). At present, we think that the most productive contemporary approach in order to explain and understand the capacity or role of any nation state, is the one that emphasizes the need to look at how any given state manages to negotiate its position in relation to the particular contexts (for example historical legacies, regional and global economic and political structures, etc.) that may constrain and/or facilitate its action space. The different contributions in this volume that discussed ‘good’ and ‘bad’ examples of national AIDS politics were doing precisely this – as they all pointed to the complexities of the developments that have led to ‘success’ or ‘failure’. For example, when Nana K. Poku analysed the relationship between the AIDS epidemic and the fragility of African states in Chapter 4, arguing that it is possible to talk in general terms about ‘the African state’, he highlighted several explanations for this. They included the authoritarian legacy of colonial rule and the failure of post-colonial elites, producing a number of specific common traits that defines the contemporary African state; such as a parochialisation of the public realm that has institutionalised corruption, and a resource allocation that has come to follow ethnic or religious lines. These historical developments have indeed made African states extremely ill-equipped to come to terms with the accelerating poverty, fuelled by the latest phase of economic globalization, which has increased global structural inequalities. Poku cites predictions stating that if current trends continue, 50 per cent of the poor in the developing world will by 2015 live in African countries, compared with 25 per cent in 1990. And HIV/AIDS is definitely making the situation worse. Further, the loss of skills due to the high AIDS mortality in the age groups that make up the core of national institutions are seriously weakening the African state. Poku thus presents strong arguments for his thesis that AIDS is ‘hollowing out’ state institutions, a development that may eventually lead to ‘state collapses’ on the continent. This negative impact on AIDS mortality on political action on the African continent was also emphasized by Egerö and Hammarskjöld in Chapter 5. Looking particularly at the cases of Uganda and Malawi they emphasized how AIDS mortality is seriously threatening the state’s capacity for governability.

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They indeed provided a striking image of this when they accounted for a trip to Malawi, during which one of the authors found that in the capital Lilongwe, ‘many offices in government buildings were empty – important staff had fallen sick or passed away, and the budget did not permit replacing them’ (p. 75). Further, Egerö and Hammarskjöld, also made an important point when they highlighted the loss of ‘institutional memory’ when younger and less experienced persons actually do replace those senior officers that have died from AIDS in the public sector. Turning to the ‘good examples’, the case of Brazil is reported as one of the foremost ‘success stories’ in the world, particularly in the context of the Global South: it has developed a uniquely determined governmental AIDS policy, including free distribution of medicines. In her discussion of Brazilian AIDS politics, and the different interpretations and conclusions that have been drawn from the case, Cristiana Bastos in Chapter 13 related the internal dynamics of the Brazilian case to the process of globalization. She showed how the Brazilian AIDS politics emerged as a complex articulation of global politics, international funding and expertise, linked to national processes in connection with the emergence of new social movements and the fall of the dictatorship in Brazil. An important dimension of Brazil’s AIDS politics is that it has resisted claims made by transnational pharmaceutical companies that the Brazilian domestic production of medicines are violating international patent regulations. Here Brazil has referred to a rule in the WTO agreement that allows for patents to be ignored in the cases where a country faces a serious threat to its public health. From her contextualization of ‘the Brazilian case’, Bastos drew the conclusion that the model cannot be exported – or rather, that the case can not be perceived or generalized in terms of a ‘model’. This is not to say that other countries cannot learn from Brazil, but that such learning is mainly about producing context-sensitive knowledge about the specific possibilities and constraints for articulating effective local/national AIDS politics. Uganda is another well known ‘success story’ of AIDS politics in the Global South. According to reports, a number of interventions carried out by the government, in close cooperation with international donors and civil society, resulted in that the peaking HIV sero-prevalence rate of 30 per cent of the population (50 per cent in some urban sites) in the early 1990s was reversed, going down to 6 per cent in the year 2000. This ‘success story’ has however begun to be questioned; Ugandan AIDS politics might not have been all about success; figures may not be all that reliable, and whatever decline in HIV prevalence there may have been, it might not have come about solely as a consequence of state policies (de Waal 2006). The chapters dealing with Uganda in this volume confirmed that the Ugandan case cannot unambiguously be labelled a ‘success’. While Kirumira pointed to problematic aspects of international aid (Chapter 6), Fred Bateganya, Swizen Kyomuhendo, Gabriel Jagwe-Wadda and Chris Columbus Opesen (Chapter 8)

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identified two major challenges facing the government: the structural inadequacies and the low male parent’s involvement. Still, the contributions on Uganda in this volume gave evidence that Ugandan AIDS politics, taken as a whole, is an example of an adequate and relatively successful response to the epidemic. Considering the crucial aspects of Uganda’s AIDS intervention highlighted by Kirumira together with Jones and Koffeld’s comparison between Uganda and South Africa in Chapter 7, it is evident that the factors behind Uganda’s productive political response were in most aspects similar to those in Brazil, as described and analysed by Bastos and Terto and García (Chapter 14), especially regarding the crucial aspect of active involvement of civil society and a dialogue between the state and civic actors. And it might further be argued that the latter aspect is precisely what has been lacking in South Africa, where state AIDS politics clearly has not been successful.

AIDS and democracy A hotly debated issue in theories and empirical research on AIDS politics is related to democracy, and more specifically whether democratic states are more effective in fighting the AIDS pandemic than authoritarian states (Nelufule 2004). This is a research issue with important and direct implications for actual policies, as international AIDS aid to the Global South often comes with a ‘democratic check-list’, built on the assumption that democratization in the receiving country is not only desired, but necessary for an effective AIDS policy. While the case of Brazil may indicate that there is such a connection, Dennis Altman argued forcefully (Chapter 2) for the view that there is no obvious connection between democratization and improved state response to HIV/AIDS; it has for example not been proven in the cases of South Africa, Indonesia and Ukraine. Further, Jones and Koffeld cite Putzel, who argues that in Uganda Museveni, ‘unshackled from democratic checks and balances’ (p. 117) was able to make a dramatic impact on AIDS responses – and here the criminalization of sex workers and sexual minorities is mentioned. Further, as Altman notes, Cuba can claim that its authoritarian measures against AIDS – which has included quarantine of HIV infected people – has prevented a serious epidemic in the country. And as Peter Baldwin shows in his important work Disease and Democracy: The Industrialised World Faces AIDS (2005), a lesson from the democratic countries in the Global North is that they developed surprisingly different responses, where some states favoured interventionist strategies that clearly subordinated civil liberties to the ‘collective good’. An example is Sweden, as its successful response to AIDS in the 1980s had little do to with values that we associate with democracy. Quite the opposite: the central features of Sweden’s early response to AIDS were measures that some observers have defined as rather authoritarian – including the government’s

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shutting down of gay sauna clubs and a law forcing the individual to reveal his/her HIV status before having sex (risking jail if violating the law). Again, in explaining the relation between democracy and AIDS policy, we would once again emphasize the importance of an analysis that looks at the specific context of each country. For example, Baldwin’s study (2005) concludes that the responses to the AIDS epidemic by the nations of Western Europe and North America largely corresponded to historical patterns; i.e. prevention tactics adopted during the nineteenth century in relation to epidemics of contagious disease. Applying this approach to countries in the Global South would of course once again remind us of colonial legacies. This does however not exclude the possibility to learn lessons from previous cases regarding the relations between democracy and effective AIDS governance. Democratic politics has thus not in any unambiguous way been proven the most efficient way to combat the AIDS epidemic. Contrary to the assumption often made in global policy declarations on what constitutes ‘good governance’ in the case of AIDS politics, Baldwin’s book, and a number of contributions in this volume, show that the relation between an effective AIDS policy and democracy constitutes a potential dilemma. To put it abstract: the means to achieve the desired ends of a democratic society and a society which has defeated the AIDS pandemic are not necessarily in harmony, they may even contradict each other. In many contemporary cases of AIDS politics, this dilemma boils down to the problem of balancing the human rights of the infected with the protection of the un-infected. While many policy documents tend to suppress this dilemma, further research into this area must acknowledge it. The political and ethical consequences of such an approach are well formulated by Strand (2007): A comparative analysis of the effectiveness of governance types in responding to the epidemic may yield the result that authoritarian AIDS governance is most effective. . . . Such a finding would not, however, lead us to advocate non-democratic forms of government. Defeating the epidemic would be a Pyrrhic victory if in doing so we lay to waste the democratic gains of the last two decades. (p. 222) A problem with the general discussion on the relation between democracy and AIDS politics is however that it often uses the concept of ‘democracy’ as if it represented a homogeneous, non-contradictory set of principles, values and practices – and that analyses too often depart from, and too much emphasize, abstract models rather than historical realities, with all their ‘imperfections’ and contradictions. This often happens even where democracy is limited to a well established view of democracy as parliamentary democracy, composed of a set of political institutions, processes and rights. We think that a more refined and subtle analysis on the relations between democracy and an effective AIDS politics would benefit from putting more

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emphasis on breaking down ‘democracy’ into different elements, empirically investigating the presence/absence or strength/weakness of certain aspects of democratic politics – as was for example done in Jones and Koffeld’s Chapter 7 in this volume. Given this modification of how to analytically use the concept of ‘democracy’, we still think that there are good reasons to believe that there are important aspects of democracy that may be shown to support an effective response to AIDS. For example, the element of an ‘open attitude’ to the disease, which has proved to be so important for example in Uganda, is clearly characteristic of a democratic rather than an authoritarian state. And it may be argued that one of the most important explanations as to why the young democratic state of South Africa has failed to respond adequately to this disease is because it has failed in this democratic aspect. Another factor intrinsically connected to democracy and democratization that undoubtedly has been crucial in order to put AIDS on the political agenda on all continents, and which is highlighted in this volume, is mobilization in civil society.

Civil society and social movements Originally responding to developments in Eastern Europe and Latin America in the 1980s and 1990s, a wave of international research on democratization and ‘development’ has increasingly emphasized the role of civil society. Further, while previous definitions of ‘civil society’ have been associated with the modern nation state, a number of scholars are now pointing to the need to explore the emerging global civil society to which national civil societies are increasingly linked (Anheier et al. 2004/5; Kaldor 2003).The importance of civil society and social movements for establishing AIDS as a crucial issue on political agendas on a national and global level has also been highlighted by a number of scholars (Altman 1999, 2001; Barnett and Whiteside 2006; Bastos 1999; Epstein 1996; Follér and Thörn 2005; Söderholm 1997). In addition to this, policy makers have also recently shown an increasing interest in civil society; it is part and parcel of the package of ‘good governance’, which in the language of the World Bank and other influential institutions has redefined – or perhaps even replaced – ‘development’. To quote Göran Hydén (2006: 183), ‘civil society is in – development is out’. Considering these developments, there are good reasons to be suspicious of any celebration of civil society in general, especially as processes occurring in civil society, in spite of much talk and theorizing, in many cases still tend to be under-researched. For example, research on relations between the growing AIDS activist sector and democratization is largely lacking (Nelufule 2004). Further, many definitions of civil society lack an analytical dimension, simply referring to a space between the market and the state, predominantly occupied by NGOs.

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While certain theories on civil society operate with an implicit functionalist perspective, emphasizing the complementarity of civil society in relation to the state and the economy, we would emphasize that any relevant research on civil society must highlight conflicts, and deal with questions such as the following: What are the relations in terms of power – between civil society actors on the one hand and the state and the market on the other? What is at stake in conflicts that civic actors are involved in – whether their opponents are states, corporations or other civic actors? What constitutes the power that civic actors can mobilize in such conflicts? The contributions in this volume offered a number of both theoretical and empirical insights on activism and mobilization in civil society. They suggested that we look at civil society as a space for communication and struggle over the articulation of political issues, rules, regulations, agendas and collective identities. For example in Chris Lyttleton’s chapter (15) on AIDS and civil belonging in Thailand and Laos, the concept of ‘therapeutic citizenship’ (Nguyen 2005) was used to highlight shared forms of political, cultural and biological belongings that have been reshaped under the presence of HIV in both of these countries. An emphasis on the conflictive and political nature of civil society also implies highlighting social movements as forms of collective action aimed at social change (Melucci 1996, Della Porta and Tarrow 2005; Thörn 2006; Teixera 2002) – a perspective that was used in the contributions on civil society in Part 3 and Part 4. As Terto Jr and García emphasize in Chapter 14, it is important to distinguish a social movement from an NGO. ‘Social movement’ is an analytical concept that refers to a broad constellation of collective actors, which on an empirical level may include various forms of organizations (including NGOs), groups and networks (Thörn 2006). May Chazan’s chapter (12) is an excellent example of how social movement theory, and in particular the ‘new social movement approach’, can provide a coherent and productive analysis that improves our understanding of what is going on ‘on the ground’. Looking at a number of empirically heterogeneous forms of ‘social AIDS activism’ – so called ‘survivalist projects’, Chazan explained how and why these projects mobilize. In opposition to scholars who define these initiatives as rather spontaneous, ‘non-political’, and as different from social movement activism (e.g. Habib 2003), she argued that they indeed are inherently political as they challenge social systems at a local level. The first important AIDS movement appeared in the US during the 1980s. Through a multi-faceted action repertoire it worked on a number of levels in order to achieve a recognition of AIDS as a social and political problem; putting pressure on political decision makers to respond adequately; influencing public opinion in order to de-stigmatize the diseased; and engaging directly with medical science in order to create an understanding for the medical needs of the diseased and to speed up research (Epstein 1996; Altman 1999). In the 1990s, ACT UP made AIDS increasingly visible through

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a number of media oriented symbolic actions, which inspired activists in different parts of the world, including Brazil and South Africa in the Global South. The first social movement that made an impact in the Global South appeared in Brazilian civil society. In Chapter 13, Cristiana Bastos cited the former president (and sociologist) Fernando Henrique Cardoso, stating that the crucial factor behind Brazil’s uniquely determined governmental AIDS policy was the pressure of a broad AIDS-related social movement, which was part and parcel of a wider process of democratization after 20 years of dictatorship (Bastos 1999, Follér 2005, Galvão 2000). Bastos mentions bridge-building (with the medical science community, with pharmaceutical corporations and policy makers) as an important aspect of this wave of AIDS activism, as well as the struggle to redefine AIDS as a health issue, which also affected the broader health sector: ‘Talk of empowerment, gender, sex oppression, prevention, commerce and education became as familiar in AIDS conferences as reports of clinical trials and laboratory research’ (p. 228). As, highlighted by Terto Jr and García it was extremely important that the political vision of the Brazilian AIDS movement at an early stage did not stop at defining the AIDS issue as a health issue or as a political issue in the narrow sense. Rather, it focused on broad social mobilization, popular participation and a concept of public health based on human rights. They also argued that the Brazilian AIDS policy emerged as a result of the interpenetration of governmental and non-governmental mechanisms that regulate politics and initiatives. The case of AIDS-related mobilization in South African civil society, which was dealt with in several of the contributions in this volume, is particularly interesting for several reasons. First, while it is mainly a phenomenon associated with the period after the first democratic elections in South Africa, it has, in contra-distinction to the case of Brazil and Thailand, emerged and continued to grow in a political climate defined by a hostile attitude from the government. Second, its leading social movement organization, the Treatment Action Campaign (TAC), has earned a global reputation for its successful national campaigns not just in relation to the South African government, but also for its global campaign against the policies of transnational pharmaceutical corporations. The lack of an effective AIDS-policy in South Africa is largely due to the AIDS-denialism of President Thabo Mbeki. This position has also included a hostile attitude toward AIDS-related NGOs and social movements who base their work on the well-established assumption that AIDS is caused by HIV. The position of the government, as well as the space of action for AIDSrelated movement, is however presently changing. The approach of the government has in fact been a mobilizing factor in South African civil society, and the changing position of the former is largely due to the mobilization and pressure of the TAC, which in 2003 launched a successful campaign of

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civil disobedience to support a ‘framework agreement’, on a government HIV/AIDS policy ( Jones 2005; Mbali 2003). TAC is a broad social movement organization, which has sought alliances with unions, politically active churches and CBOs, and has functioned as a node in the network of civic HIV/AIDS initiatives. In Chapter 11, Mandisa Mbali emphasized the importance of the legacies of earlier feminist and gay activism in South Africa, and the influence of global linkages for the emergence of TAC. Such links were employed by TAC, when 38 pharmaceutical companies brought charges against the South African state for suspected breaches of the WTO agreement, motivated by a planned import of medicines from Brazil. With support from Médecins Sans Frontières (MSF) and Oxfam, the TAC initiated an extensive national and transnational campaign and the pharmaceutical industry subsequently dropped the charges because of the globally spread negative publicity (Olesen 2006). The case of civic AIDS activism in Thailand, as analysed by Lyttleton in Chapter 15, partly follows a similar path as that of Brazil. The emergence of a civil society in Laos is by contrast largely a result of a ‘democratization from above’ – i.e. a process in which democratic values are imposed by donor agencies, rather than emerging from local communities. Lyttleton is rather sceptical to this development: ‘All too often Bretton Woods-style conditionality has made life much worse for those with HIV/AIDS’ (p. 270). Contrasting the influence of ‘global civil society actors’ (for example INGOs, private foundations and donor agencies) in the national civil societies of Brazil and South Africa with that of Laos, it might be argued that the stronger the local base for civil society mobilization, the more it may be able to benefit from transnational interactions. In the case of a weak national/local civil society, there are obvious risks of the emergence of a kind of ‘NGO-imperialism’, which might be rather insensitive to local needs and collective identities. What conclusions can be drawn from the cases in this book regarding the relation between on the one hand democracy/democratization and on the other hand AIDS activism in civil society? The functionalist approach emphasizes the complementarity of civic actors; if there is a democratic government, there are institutional conditions for a strong civil society, which may then watch over and strengthen democratic institutions. Such an argument is often based on the assumption that the mobilization of civil society presupposes a democratic state, providing the legal framework for freedom of speech, which is fundamental for civic actors. We would however rather emphasize the fact that historically, the mobilization of civil society has been a precondition for democratization of state apparatuses. Apartheid South Africa is just one historical example of the fact that a civil society can exist – and indeed produce the conditions for democratic change – in spite of a repressive state apparatus. And looking at the cases of Brazil and Thailand, it might even be argued that AIDS activism, through engaging in struggles of power over the allocation of resources as well as over the definition of health

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issues and collective identities, not just benefited from, but contributed to, democratization of the state apparatus. This is of course not to say that civic mobilization does not benefit from democratic state governance when such is present. As Jones and Koffeld forcefully argue in relation to South Africa, while the democratic ‘checks and balances’ of the state has not resulted in an adequate response to the epidemic they have provided an absolutely critical means for civil society to seek to acquire and transform constitutional rights and enhance accountability. That this does not come about easily or solely through formal attributes of democracy is a powerful reminder to global development organizations and global civil society that mechanisms for accountability come about through politics of engagement and struggle. There is an urgent need in South Africa to reimagine the rules governing AIDS policies and implementation to move beyond a heavily polarized, tragic and debilitating situation currently characteristic of state–civil society relations. (pp. 117–18) Thus it may be concluded that democracy and democratization, as well as adequate political responses to social and political problems in any country, is always the result of complex interplay between the government, civil society and other powerful actors. All this being said about the importance of civil society for democratization and powerful AIDS governance, it must also be emphasized that the approach to civil society put forth in this volume does not assume that there is a necessary link between the growth of civil society and increasing democratization (Hearn 2000, Ottaway and Carothers 2000) – or that civil society per definition is inherently democratic. As will be discussed in the next section, the political cultures of civil society also include power structures and power relations that are crucial obstacles both for a successful political response to AIDS – and for a truly democratic society.

The politics of class, gender, race and sexuality As Nana K. Poku emphasized in Chapter 4, ‘HIV/AIDS can be described primarily as a disease growing out of poverty conditions and class and gender inequalities’ (p. 60) – and, as pointed out by Leclerc-Madlala, Robins and Mbali in Chapter 9–11 , out of racism and oppression based on sexuality. It is no coincidence that the AIDS epidemic has struck hardest on a continent where nearly half the population (300 million people) lives on less than one US dollar a day. The fact that the latest phase of economic globalization has created increasing class cleavages during the last decades (UNDP 2006) is perhaps more clearly visible in Africa than in any other region in the world. According to Poku, half the population of the continent is poorer in 2006 than it was in 1990. Adding to the weakness of the African states

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emphasized by Poku, poverty and class inequalities are major obstacles for self-organized mobilization in the civil societies of these countries. History has indeed showed that poverty may ignite social protest, but in order to sustain and organize such protests over a longer period of time, human and economic resources are needed – and they are not abundant in the parts of the world that are most severely struck by HIV/AIDS. This means that ‘selforganization’ in civil society often has to rely on middle-class support and leadership, which risks reproducing the inequalities that the struggle sets out to fight. As already mentioned, this is particularly the case where international donor funding plays a major role in civil society. At the same time the case of South African civil society, and particularly the ‘survivalist struggles’ analysed by May Chazan in Chapter 12, does prove that it is possible to reverse vicious circles of poverty, disease and political inactivity. Women are harder hit by HIV/AIDS than men in various ways. In subSaharan Africa, almost 60 per cent of all the infected are women. In the age group of 15–24 the situation is even worse, as three quarters of people living with HIV/AIDS are women. The reason behind this is the deep structures of gender inequality, manifested in various practices on different levels of society – making women vulnerable in numerous ways. As Suzanne LeclercMadlala noted in Chapter 9: At every stage of the maturation of this epidemic, from the prevalence of HIV infection to the management of the AIDS sick, dying and orphaned, women in Southern Africa are disproportionately infected and affected by the disease. (p. 141) Leclerc-Madlala’s chapter showed how regimes of gender equality in the context of Southern Africa intersect with class and intergenerational inequalities, as for example in the case of the ‘transactional’ sexual relationships, where young women who liaise with older men get financial rewards. An important aspect of Leclerc-Madlala’s analysis is that vulnerability to HIV/AIDS in this part of the world is intrinsically connected to the vulnerability of women to male violence; citing WHO she argues that sexual violence is a primary contributor to the high levels of HIV infection rate in the region. According to Leclerc-Madlala, the number of rapes per year estimated in South Africa is two million (one every 30 seconds). There is often a dimension of inter-generational inequality to rape too; in Soweto, 90 per cent of the rapes reported are committed against children under 12 years. The issue of rape and AIDS gained an extremely high symbolic significance in South African public space in 2006, during the ‘Zuma trial’ highlighted in Chapters 9–11. While the Zuma case may indeed give reasons for pessimism regarding to what extent awareness about the risks of contracting HIV/AIDS is present in South African civil society, both Mbali and Leclerc-Madlala argued that the trial has sparked a new wave of AIDS-related feminist activism in

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South Africa. Leclerc-Madlala emphasized the importance of the ‘Southern Africanness’ of this AIDS feminism (meaning sensitive to the specific context of Southern Africa), pointing to how feminist studies on gender and AIDS in Africa often have been naïve and insensitive to the particular context, which, she argued, is related to the fact that these studies in most cases have been carried out by middle-class academics from the Global North, whose feminist ideas could not easily be exported to Southern Africa. The contributions in this book that focused on the oppression of women all avoid the danger of producing a stereotyped image of women as passive victims. May Chazan’s contribution is an example of women’s agency in a context largely determined by structures of class and gender inequality and oppression. Further, with their explicit attempt to go beyond one-dimensional images of men as perpetrators of sexual oppression and violence, the chapters by Robins and Bateganya, Kyomuhendo, Jagwe-Wadda and Opesen contributed to fill an important gap in gender-related AIDS research regarding the role of men in relation to AIDS. Their analysis pointed to the fact that gender oppression always intersects with other structural inequalities and forms of oppression, such as class stratification and racism. That the issue of race is crucial in order to understand and analyse the current HIV/AIDS epidemic in many parts of the world has been highlighted by several contributions in this volume. The issue has recently emerged on the political agenda in Brazil, where the black population, often the poorest, is the group perceived as the most vulnerable to the disease and where a campaign titled ‘AIDS and Racism’ was launched in 2005. Regarding the case of South Africa, Mbali (2003) and Jones (2005) have previously argued that the legacy of apartheid is an important component in order to understand the denialist position of Mbeki; at an early stage of the epidemic, primarily white South African health authorities and doctors often used a discourse on ‘African sexuality’, based on racist and sexist stereotypes, in their attempts to explain the epidemic. Second, Gauri and Lieberman (2004) argue that the legacy of apartheid is an important obstacle for the possibilities of creating a political consensus on the AIDS issue in South Africa in general; a specificity of the South African case is ‘a political discourse around who is afflicted with AIDS, and who is to blame’ (p. 30), connected to ‘a clear and consistent racialization of the disease’ (ibid.), something which is also linked to widespread homophobia. In this volume, Mandisa Mbali highlighted how racial fracturing of the early South African AIDS activism contributed to prevent unified responses to AIDS. For example, the main gay activist organization, Gay Association of South Africa (GASA), refused to support the well known gay activist Simon Nkoli when he was jailed by the apartheid authorities for antiapartheid activities in the 1980s. Mbali also discusses and analyses debates related to racial divisions in the South African women’s movement. Further Jones (2004a; 2004b) has emphasized that the race issue is also crucial in the context of international aid, which in some cases has been based

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on a discourse including racist notions about ‘African sexuality’, which has led the developmental agencies of both Britain (DFID) and Norway (NORAD) to emphasize prevention (including the distribution of condoms) rather than the distribution of ARTs. This indicates that the politics of aid is not only an important but also sometimes problematic aspect of AIDS politics.

The Politics of Aid(s) The role of international aid in AIDS politics has been briefly touched upon above. We do however feel that this is one of the most urgent issues for future research, as it is an extremely significant, but largely under-researched, aspect of AIDS politics. While a redistribution of resources from the Global North to the Global South is absolutely necessary in order to come to terms with AIDS and the poverty that is intrinsically linked with it, international aid programmes are not always sensitive to the specific social and cultural conditions of the receiving context. Too often, aid comes with conditions that may produce intended or unintended consequences that are contraproductive in fighting AIDS and poverty. For example, while international aid has been part of the successful programme to fight HIV/AIDS in Uganda, both Kirumira’s and Egerö and Hammarskjöld’s chapters argued that the aid programmes of two of the most important donor agencies in the field of HIV/AIDS, the Global Fund (to Fight AIDS, Turberculosis and Malaria), and PEPFAR, have also created various kinds of problems in the country. Kirumira’s chapter indicated that to the success story of Uganda it must be added that the positive trend might now be changing, and that this may partly be due to conditions put by influential donor agencies. An example of such conditions is that PEPFAR, a US, five-year 15 billion dollar initiative to fight HIV/AIDS (launched by George W. Bush in 2003), demands that receivers of aid should not advocate the use of (or distribute) condoms. For reasons that are obviously ‘moral’, PEPFAR instead emphasizes abstinence from sex as the most preferred AIDS prevention method. In practice this means that any organization that is to receive funding from PEPFAR, must sign a statement in which they agree not to distribute condoms. Kirumira also points to other problematic aspects of the politics of international aid in Uganda, particularly in the case of PEPFAR. These problems are not just related to the strings that are attached to its aid, but also to the fact that its size and strength makes it a powerful, but largely autonomous, actor in Ugandan society. First, while the number of AIDS-related actors in Ugandan civil society is growing, the funding resources for AIDS-related programmes is narrowing to a limited number of actors, mostly faith-based organizations, which according to Kirumira are preferred as partners both by PEPFAR and the Global Fund. Second, Kirumira points to problems of democratic accountability, as the management of PEPFAR is run by a unit within the US Embassy which is accountable only to the US Ambassador.

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Third, there may be unintended financial problems, as PEPFAR has not been discounted against the health sector budget – according to Kirumira ‘a situation that may already have changed for the worst as far as the health sector budget ceiling is concerned’ (p. 92). If the large sums of money that are being channelled into the country by international donors such as PEPFAR operate independently of the national budget, it may in the long run create serious problems with inflation. This example perhaps once again points to the fact that while the politics of AIDS is increasingly global and local, the national level is still crucial in order to manage and co-ordinate effective responses to AIDS in various parts of the world. As contemporary AIDS politics is to a large extent a form of ‘donor politics’, these developments raise important questions both for research and theories on global governance in general, and for the future of HIV/AIDS politics in particular. In the context of aid, cooperation is per definition shaped by the unequal distribution of wealth globally; ‘international aid’ means that organizations in the Global North provide resources to organizations in the Global South, who are the agents that are supposed to carry out the actions that the partners have agreed on. While it is likely that these power relations, which are part and parcel of the formation of the networks, will have a significant influence on the process of co-operation, it is not a case of ‘simple’ reproduction of power. Receivers of aid can be expected to resist conditions put by donors and to create a space for independent interpretation and action. Further, power struggles can be expected to occur within in the local context receiving aid. While up until 1989 aid clearly was framed by the political alliances and agendas of the Cold War, the fall of the Soviet Union shifted its political emphasis; it largely became tied to the neo-liberal agenda of deregulation and privatization. An important change that has come in the latter phase is the increasing emphasis on NGOs as aid agents. While international NGOs (INGOs) are often used to channel money from governments and various foundations, local NGOs have become increasingly important as receivers of aid. The trend has been hotly debated and the concept of ‘the aid industry’ (e.g. Van Rooy 1998) – denoting a conglomeration of organizations and networks with a self-serving purpose – has been coined. Advocates of the emphasis on NGOs in aid politics have argued that it provides a more efficient, and sometimes also more legitimate, way of aiding development, as it bypasses state bureaucracies and nepotist networks, and reaches actors ‘on the ground’, well suited for implementation because of their knowledge of the specific context. Critics have on the other hand argued that it is yet another strategy of domination, even more arbitrarily designed than previously, as the NGOs in both ends, and the NGO representatives often appointed to bodies monitoring the use of aid, lack democratic legitimacy and accountability. The criticism directed at aid and development has led to a certain degree of reflexivity in the community of donors during the last decade; the current wide

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use of the concept of ‘partnership’ should be seen as a sign of an attempt to achieve a more equal relationship between donor and receiver, thus providing the latter more autonomy than previously. Recent research has however showed that beneath the surface of such declarations, old colonial perceptions about development still prevail among donors (Escobar 1995; Eriksson Baaz 2005; Jones 2004b; Bell & Slater 2002). The broad picture of the often problematic impact of the ‘aid industry’, which in many cases has been proved to be accurate, has led to widespread cynicism about any attempt by the rich parts of the world to aid the improvement of social conditions in the poor countries in the South. It must however be emphasized that aid is not a homogenous phenomenon, and that it has not always been a failure. In the case of South Africa, a successful example of aid is the support from the Swedish government to the ANC and other antiapartheid organizations during the apartheid era. While it might be correctly argued that this support did serve the interests of Swedish foreign policy, it also made a contribution to the process which led to the first democratic elections in South Africa in 1994. The major lesson to be learned from this case is that the effectiveness of this aid was related to the fact that it was designed as a support with minimal conditions to a strong and well organized social movement (Thörn 2006). To conclude, future research on the impact of international aid to AIDSrelated activities must, beyond the debate on whether international aid in general should be considered as ‘good or bad’, seek to provide a differentiated and nuanced analysis, focusing on the (different) institutional settings, ideological commitments (implicitly or explicitly expressed) and political agendas of donors – how these may impact on their AIDS aid and what this means in terms or influence on local AIDS work in the Global South.

Conclusion We set out with a number of questions regarding the current state of the politics of AIDS, and we have arrived with a number of answers, but also with new questions, that need further research. Globalization, social, economic, political and cultural, seems to be here to stay, affecting any local decision or action, whether individual or collective. The concept of ‘governance’ may be a fruitful approach for an improved understanding and analysis of politics in this new context – if it is used in a cautious and critical way. This approach highlights policy networks that are performed in ‘glocal’ forms, involving constellations of global, national and local actors. While many studies show that such projects increase in number on a global or transnational level, several authors in this volume have put forth good arguments and empirical evidence that emphasize that the state is still an important political level, particularly if we are concerned with democratic governance.

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Beyond any state-centric approach, however, the various cases of state politics discussed in this volume show that the contemporary state cannot be seen as the centre of politics – but rather as an important node in networks of power that govern the contemporary world. In this situation, the possibilities and constraints for state action is a matter of negotiating with the particular context in which the state is located. While this approach to the nation state indicates that external/internal is an increasingly problematic distinction (as domestic politics are increasingly indistinguishable from global processes), we may still use it as a shorthand in order to distinguish between different fields of political action that the state must relate to. Regarding the external context for any state intending to perform a politics of AIDS we should ask the question: How can it negotiate its position in relation to other powerful states and to various transnational actors, such as supranational institutions, transnational corporations, private foundations, aid agencies and resourceful NGOs? However, as a number of contributions in this volume have shown, any successful AIDS politics in the context of a nation state is dependent on the strength of civil society and the capacity and will of the government to interact with civic actors – and to include them in policy programmes. As Chris Lyttleton and Veriano Terto Jr and Jonathan García point out in Chapters 14 and 15, we must however also ask questions about the limits to cooperation between the state and civil society. If civic actors are included to the degree that they become one with the government, the border between the state and civil society collapses; which means a suppression of the antagonism between state and civil society that is a precondition for a ‘healthy’ democracy, and for the further deepening of democratic processes. Many arguments based on empirical observations and data put forth in this volume make it difficult to be optimistic about the future of the epidemic and its social consequences. There are however also a number of examples that actually prove that it is possible to construct adequate political responses to the disease. Perhaps Antonio Gramsci’s famous statement about ‘the pessimism of the intellect and the optimism of the will’ is particularly adequate here. In order that the course of the epidemic can possibly be changed, a number of things are needed, but it can not happen without a political will, among the elites of course, but also among people who do not belong to the elites. We must constantly remind ourselves that, historically, popular movements have most importantly played a crucial role in processes of change that has been to the benefit of the many rather than the few.

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Anheier, H., Glasius, M. and Kaldor, M. (2004/5) Global Civil Society Yearbook. London: Sage. Baldwin, P. (2005), Disease and Democracy: The Industrialized World Faces AIDS. Berkeley: UCLA Press. Barnett, T. and Whiteside, A. (2006), AIDS in the Twenty-First Century: Disease and Globalization. Second Edition. Basingstoke: Palgrave Macmillan. Bastos, C. (1999), Global Response to AIDS. Science in Emergency. Bloomington and Indianapolis: Indiana University Press. Bell, M. and Slater, D. (2002), ‘Aid and the Geo-Politics of the Post-Colonial: Critical Reflection on New Labour’s Overseas Development Strategy’, Development and Change, 33(2): 335–60. Booth, D. (2005), The Africa Commission Report: What about the Politics? Overseas Development Institute. de Waal, A. (2006), AIDS and Power: Why There Is No Political Crisis – Yet. London and New York: Zed Books. Della Porta, D. and Tarrow, S. (2005), Transnational Protest and Global Activism: People, Passions and Power, Oxford: Rowman & Littlefield. Epstein, S. (1996), Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press. Eriksson Baaz, M. (2005), Paternalism of Partnership: A Postcolonial Reading of Identity in Development Aid. London: Zed. Escobar, A. (1995), Encountering Development: The Making and Unmaking of the Third World. Princeton: Princeton University Press. Follér, M. (2005), ‘Civil Society and HIV/AIDS in Brazil. The emergence of an AIDS policy’, in No Name Fever. AIDS in the Age of Globalization. Lund: Studentlitteratur, pp. 193–226. Follér, M. and H. Thörn (eds) (2005), No Name Fever. AIDS in the Age of Globalization. Lund: Studentlitteratur. Galvão, J. (2000), AIDS no Brasil. A agenda de construção de uma epidemia. São Paulo: ABIA/editora 34. Gauri, V. and Lieberman, E.S. (2004), ‘AIDS and the State: The Politics of Government Responses to the Epidemic in Brazil and South Africa’, paper presented at APSA, September. Habib, A. (2003), ‘State–Civil Society Relations in Post-Apartheid South Africa’, in Daniel, J., Habid, A. and Southall, R. State of the Nation: South Africa 2003–2004. Cape Town: HSRC, pp. 227–41. Hearn, J. (2000), ‘Aiding Democracy? Donors and Civil Society in South Africa’, Third World Quarterly, 21(5): 815–30. Held, D. and Koenig-Archibugi, M. (eds) (2005), Global Governance and Public Accountability. Oxford: Blackwell. Hydén, G. (1992), ‘Governance and the Study of Politics’ in Governance and Politics in Africa. Edited by Hyden, G. and Bratton, M. Boulder: Lynne Rienner Publishers Inc. pp. 1–26. Hydén, G. (2006), ‘Civil Society: What Next’, Development Dialogue, 1(47): 183–201. Jones, P.S. (2004a), ‘When “development” devastates: donor discourses, access to hiv/AIDS treatment in Africa and rethinking the landscape of development’, Third World Quarterly, 25(2): 385–404. Jones, P. (2004b), ‘Of Gifts and Return Gifts: Beyond the Political and Practical Deficits of Donor Assistance’, in Development Update 5(2): 157–82.

296 The Politics of AIDS Jones, P. (2005), ‘A Test of Governance: Rights-based struggles and the politics of HIV/AIDS policy in South Africa’, Political Geography 4(24): 47. Kaldor, M. (2003), Global Civil Society: An Answer to War. Oxford: Blackwell. Kjaer, A.M. (2004), Governance. Cambridge: Polity Press. Mbali, M. (2003), ‘HIV/AIDS Policy-Making in Post-Apartheid South Africa’, in Daniel, J., Habid, A. and Southall, R. State of the Nation: South Africa 2003–2004. Cape Town: HSRC, pp. 312–29. Melucci, A. (1996), Challenging Codes: Collective Action in the Information Age, Cambridge: Cambridge University Press. Nelufule, M.D. (2004), ‘AIDS and Democracy: What do We Know?’, Paper prepared for the Democracy, Governance and HIV/AIDS in Africa Roundtable, Pretoria, July, 19–20. Nguyen, V.-K. (2005), ‘Antiretroviral Globalism, Biopolitics and Therapeutic Citizenship’, in Ong, A. and Collier, S. (eds) Global Assemblages: Technology, Politics and Ethics as Anthropological Problems. MA: Blackwell Publishing pp. 124–44. Olesen, T. (2006), ‘ “In the Court of Public Opinion”: Transnational Problems Construction in the HIV/AIDS Medicine Access Campaign 1998–2001’, International Sociology 1(21): 5–30. Ottaway, M. and Carothers, T. (eds) (2000), Funding Virtue. Civil Society Aid and Democracy Promotion, Carnegie Endowment for Int. Peace. Poku, N.K. (2005), The Politics of Africa’s AIDS Crisis. Cambridge: Polity Press. Rhodes, R.A.W. (2000), ‘The Governance Narrative: Key Findings and Lessons from the ESRC’s Whitehall Programme’, Public Administration, 78(2). Strand, P. (2007), ‘Comparing AIDS Governance’, in Poku, N.K, Whiteside, A. and Sandkjaer, B. (eds) AIDS and Governance. Aldershot: Ashgate, pp. 217–36. Söderholm, P. (1997), Global Governance of AIDS: Partnerships with Civil Society. Lund: Lund University Press. Teixera, C.A. (2002), ‘A Atuação das Organizações Não-Governamentais: Entre o Estado e o Conjunto da Sociedade’ in E. Dagnino (ed.) Sociedade Civil e Espaços Públicos no Brasil. São Paulo: Editora Paz e Terra. Thörn, H. (2006), Anti-Apartheid and the Emergence of a Global Civil Society. Basingstoke and New York: Palgrave Macmillan. UNAIDS (2006), AIDS Epidemic Update: December 2006. Geneva: UNAIDS/WHO. UNDP (2006), Annual Report: Global Partnership for Development, New York: United Nations. Van Rooy, A. (ed.) (1998), Civil Society and the Aid Industry. London: Earthscan.

Index Annan, Kofi 141 Anthias, Floya 146 apartheid system 146, 171, 287 collapse of the family 183–4 APN (Asia–Pacific Positive Peoples Network) 268 ART (Anti-retroviral therapy – or treatment) 6, 66, 77–8, 80–1, 124–5, 164, 170, 291 ARV (Anti-retrovirals) 28, 34, 41–3, 79, 80, 111, 124, 127, 167–8, 171–2, 177, 201, 214, 225, 255, 258, 261–2, 268

ABC (Abstain from sex before marriage, Be faithful and Condomize) 9, 92 ABIA (Brazilian Interdisciplinary AIDS Association) 234–5, 244, 246 accountability 7, 102, 108, 291 internal 106 external 107 Achmat, Zackie 190 ACT UP (AIDS Coalition to Unleash Power) 190–1, 285 adult mortality 57 ‘African sexuality’ 180, 290–1 see also masculinity Agenda journal 181, 188–9, 192 AIC (Aids Information Center) 91, 133 aid see donors’ and international aid AIDS/HIV activism 12, 98, 104, 108, 110, 112, 114, 116, 157, 177–8, 181, 191, 193, 201, 209, 227, 287 community based 10, 24, 105, 167, 172, 199, 210–20, 243 AIM (Integrated District Model) 135 culture 237 denial 8, 113, 115, 286 dying from/living with 245 endemic 30, 44 feminism 144 ‘gay disease’ 12, 184 life cycle 27–8 pandemic 30, 156, 229 pathological harmony 34–5 reproductive rate 34 retrovirus 33 stigma 8, 127–8, 136, 266 vertical transmission 123 see also HIV Ake, Claude 52 Altman, Dennis 4–5, chapter 2, 277, 279, 282 ANC (African National Congress) 40, 107, 113, 157, 163, 207 Women’s Section (League) 181–2, 192 Angola 14, 53, 56, 58

Baldwin, Peter 282–3 Ballard, Richard 207–8 Barnett, Tony 5, chapter 3, 56, 142, 278–9 Bastos, Cristiana 11, 12, chapter 13, 281, 286 Basu, Amrita 146 Bateganya, Fred 6, 8, chapter 8, 281, 290 Beetham, David 100 Belarus 37 Betinho (Herbert de Souza) 234, 244–5 biomedical research, 235, 238 see also medical science BJP (Bharatiya Janata Party, Indian People’s Party) 43 Bonin, Debbie 192 Booth, David 278 Botswana 31, 37, 41, 56, 58, 77, 145 Bozzoli, Belinda 184, 187 brain drain 77 Brazil 11, 12, 13, 21, 24, 225–38, 242–53, 256, 281–2, 286, 290 abertura (opening) 243 biomedical creativity 233 social sciences 233 success story 11, 225, 229, 281 Bretton Woods institutions 83 conditionality 270, 287 bureaucracy 100 297

298 Index Burkina Faso, 258 Burundi 53, 91 Bush, George W. 291 Busse, Peter 181, 190 Butler, Judith 186 Byamugisha, Canon Gideon

116

Cambodia 18, 21 Cardoso, Fernando Henrique 229, 238, 286 Cardoso, Ruth 229 CBO (Community Based Organization) 105 CCM (Country Coordinating Mechanism) 92 Center for Strategic and International Studies in the United States 17 Central African Republic 52 centralization 98 see also state Chad 53 Chazan, May 10, chapter 12, 285, 289–90 Chemical and Biological Arms Control Institute 17 children 60, 145 China 23, 226 Chirambo, Kondwani 39–40 CIA (Central Intelligence Agency) 17, 39 citizenship democratic 12 lack of 264 rights 244 therapeutic 12, 165, 172, 257–8, 264, 268, 271, 285 globalized 269 civil society 7, 8, 23, 80, 83, 100, 103, 114, 116–17, 207, 215, 225, 229, 238, 242–53, 256–7, 259–60, 265, 269, 284–8 class 4, 8, 60, 143, 152, 192, 206, 208–10, 288–90 Clinton Presidency 18 collective action 251 colonialism 50–1 legacy of 280, 283 Commission for Africa 97 communitarian explanations 203 community 215

leadership 136, 214 condom 80, 144, 150, 160, 162, 169, 183, 185–6, 235, 291 conflict 17, 19–20, 262, 266, 285 corruption 6, 22, 52, 72, 80, 93, 98, 280 see also state COSATU (Congress of South African Trade Unions) 163 bed politics 184 countries democratic 259 socialist 259 CRTA (Center of Reference and Training for AIDS) 248 CSO (Civil Society Organization) 105, 109, 123, 133, 135–6 Cuba 23, 282 culture 129, 157, 159, 165, 168, 216, 288 see also political culture and sexual culture DACC (District AIDS Coordination Committee) 106 DANIDA (Danish International Development Agency) 91 Daniel, Herbert 234, 244, 246 democracy 5, 81, 107, 242, 282–4, 287–8 no party 108 democratization 2, 24, 117, 246, 252, 287–8 of information 245 re- 253 Third Wave 100 demographic impacts 71 de Waal, Alex 23, 35, 73, 80–1, 101 development 17 DFID (Department for International Development) 83, 291 DHAC (District HIV/AIDS Committee) 106 Ditsie, Bev 189 DOT (Direct Observation Therapy) 172 donors, see international aid Downer, Alexander 17 DRC (Democratic Republic of the Congo) 20, 23, 52–3, 56, 91

Index drugs AZT (Azidothymidine) 233 Combid 255 Didanosine 261 Lamivudine 28, 126 Lopinavir/Ritonavir 255 Nevirapine 28, 111, 126–7, 201 Stavudine 28 Zidovudine 126 see also pharmaceutical industry drug users 24 East Timor 22 economy, decline in economic activity 64–5 economic society, 100 see also inequality, class, international aid, racial capitalism educated cadres 63 Egerö, Bertil 6, 7, chapter 5, 278–81, 291 Egypt 51 elections free and fair 107 electoral system 40 embodied democratic rights 244 empowerment 203, 232 enabling environments 21 Epprecht, Marc 180 Epstein, Steve 232 Ethiopia 53 European Union 83 Evans, Grant 267 fascism 43 Fassin, Eric 156 FEDTRAW (Federation of Transvaal Women) 181 feminists 10, 151, 181, 187, 193 African 148 grassroots movement against HIV/AIDS 144 health activists 141, 287 scholars 143 see also gender Floyd, Liz 182 Follér, Maj-Lis chapter 1, chapter 16 Foucault, Michel 186 Fourie, Peter 25 France 124 Freedom House 101

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FSAW (Federation of South African Women) 187 Fukuyama, Francis 265 GAP (Governance and AIDS Programme) 7 García, Jonathan 11, 12, chapter 14, 285–6, 294 GASA (Gay Association of South Africa) 178, 180, 189–90, 290 Gauri, Varun 290 Gay and Lesbian Archive 10 gay activists 287 organization 187 men 30 movement 178 rights 10, 178, 188 gender 4, 7–10, 59–60, 141–53, 156–73, 177–93, 202–20, 286, 288–90 analysis 142 -based violence 145, 149, 185–6 division of labour 129 inequality 9, 141–2, 146, 185, 288–9 issue 148 neutral 135 politics 206, 208 sensitivity 7 roles 8, 131, 136 see also ‘feminists’, ‘male’, ‘masculinity’, ‘women’ Gevisser, Marc 190 GFATM (Global Fund for AIDS, Tuberculosis and Malaria) 90–4, 258, 262, 267, 270, 291 Ghana 49, 53, 77 GLIA (Great Lakes Initiative on AIDS) 91 global consciousness 229 expenditures 255 health politics 227–8 linkages 191, 193, 287 glocal networks 293 globalization 2, 7, 8, 19, 21, 83, 93, 142, 280–1, 293 Gobodo-Madikizela, Pumla 152 Goniwe, Mbulelo 157 Gore, Al 18

300 Index government 7, 87, 100, 112, 123, 261 governance 6, 7, 8, 13, 39, 41, 72, 97–102, 116, 118, 277–9, 283, 293 governability 6, 71–2, 279 Gramsci, Antonio 294 Grundfest-Schopfe, Brooke 180 Guan, Lee Hock 259, 266 Guinea-Bissau 53 Haacker, Markus 77, 80 Haiti 18 Hammarskjöld, Mikael 6, 7, chapter 5, 278–81, 291 Hassim, Shireen 181–2, 185 health as a collective right and responsibility of the state 246 clinics 163–4 dual system 228 infrastructure 78 public system 236–7, 242, 244 workers 78, 82–3 Herbst, Jeffrey 52 HIV prevalence 22, 55, 75, 78, 80, 89, 101, 111, 281 see also AIDS/HIV Holbroke, Richard 18 homophobia 180 see also gay household 60–1 human capacity loss 63 planning 67 human rights 5, 104, 114–15, 143, 178, 181, 235–6, 244, 249, 261–2, 283, 286 human security 5, 19, 20, 24, 278 Hydén, Göran 99–100, 102, 112, 284 IBASE (Instituto Brasileiro de Análises Sócio–Econômicos) 244 IDASA (Institute for Democracy in South Africa) 7, 102 identity 9, 52, 163, 165–8, 170–1, 205, 208–9, 213, 257–8, 263, 265, 268–9 IEC (Independent Electoral Commission) 107 IFP (Inkatha Freedom Party) 40 IMF (International Monetary Fund) 83 India 31, 40, 43, 226

Indonesia 24, 282 inequality 19, 141–3, 145–6, 152–3, 289–90 see also gender inequality and power imbalances Information Education and Communication strategy 133 institutional memory loss 76 international aid 7, 13, 53, 87, 110, 123, 233–4, 258, 270, 281, dependency on 79, 83, 93, 110, 266–7, 291–3 interventionist strategies 13, 282 intimate femicide 147 Irish Aid 91 ISER (Institute for Religious Studies) 244 Islamic regimes 24 Ivory Coast 53 Jagwe-Wadda, Gabriel 6, 8, chapter 8, 281, 290 job seeking 119 Jones, Peris 7, chapter 7, 277–8, 282, 284, 288, 290 judicial system 100, 114 Kaleeba, Noering 191 kanga (traditional African cloth) 158 Kaunda, Kenneth 62 Kenya 14, 53, 60, 91, 136 Khong, Yuen 20 Khululeka (community based HIV men’s support group) 157, 167–9, 171–2 Kinsey, Alfred 186 Kirumira, Edward 6, 7, chapter 6, 281–2, 291–2 Kjaer, Anne Mette 278 Koffeld, Kjersti 7, chapter 7, 277–8, 282, 284, 288 Kyomuhendo, Swizen 6, 8, chapter 8, 281, 290 Laos 12, 255–71, 285 post-socialist 266 Red Cross 267–8 Leclerc-Madlala, Suzanne 8, chapter 9, 288–90 lesbians 188 Lesotho 31, 35, 58, 145

Index

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Leviathan 50 Liberia 53 Lieberman, Evan S. 290 life expectancy 23, 58 LNP+ (Lao Network of People Living with HIV/AIDS) 259, 267–9 long wave event 32, 56 LUSEA (Lao Union of Science and Engineering Associations) 267 Lutaaya, Philly 116, 192 Lyttleton, Chris 12, chapter 15, 285, 287, 294

MSF (Médecins Sans Frontières) 164–6, 170, 261, 287 MTCT (Mother to Child Transmission of HIV) 66, 110–11, 114, 124 Prevention of (PMTCT) 123–36 Mthathi, Sipho 143 Mthembu, Promise 184 Mugabe, Robert 41 multi-sectoral approach 7, 87, 103–4, 106, 116, 237, 243, 251 Museveni, Yoweri 8, 101, 106, 108–9, 112–13, 116–17, 282

MacFarlane, Neil 20 MAP (Multi-country HIV/AIDS Program for Africa) 89–90, 92 Malawi 58, 75–9, 83, 280–1 male circumcision 165 faulting 136 health seeking 129, 164 initiation 165–6 ‘not allowed’ 132 involvement 125–7, 132, 134–6 sexuality 172 Mandela, Nelson 112, 115, 147, 182 Mandela, Winnie 146 managing the rules 99 Mann, Jonathan 234–5 masculinity 10 Zulu traditional 162–3 new/alternative 168–9, 171–2 Mbali, Mandisa 10, chapter 11, 287, 289–90 Mbeki, Thabo 8, 42, 112–13, 115, 147–8, 161–3, 286 McPherson, Malcolm 73 media 1, 133–4, 147, 156–62, 171, 202, 214, 233–4, 255, 286 medical science 285–6 see also biomedical research Mellors, Shaun 181 military 5, 12, 17–18, 20–1, 30, 38–9, 50, 131, 243, 260 migrant labour 183 misogyny 159 mobilization 217 Mobutu Sese Seko Kuku wa za Banga 53 Mozambique 14, 58

Namibia 145 NACOSA (National AIDS Convention of South Africa) 108 NACWOLA (National Community of Women Living with HIV/AIDS in Uganda) 105 NAPHA (National Access to Antiretroviral Programme for PLWHA) 261–2 Naruemon, Thabchumpon 259 National Coordination for Sexually Transmitted Diseases and AIDS 248–9 nationalism 146 neo-patrimonialism 98 new social movements, see social movements NEPAD (New Partnership for Africa’s Development) 97 NGO (Non-Governmental Organization) 81, 87, 104–6, 108–9, 214, 230, 233, 243, 250–2, 259–60, 263, 266–9, 285, 292 imperialism 287 Ngugi, Elisabeth 191 Nguyen, Vinh-Kim 257–8 Nigeria 14, 52–3 NIH (National Institute for Health) 124 Nkoli, Simon 180, 190, 290 Nkrumah, Kwame 49, 51 NORAD (Norwegian Agency for Development Cooperation) 291 NOW (Natal Organization of Women) 181 NPA (Non-Profit Association) 267 NRM (National Resistance Movement) 101, 108, 116

302 Index NSF (National Strategic Framework for HIV/AIDS) 109 Nyati, Cecil 190 Nywagi, Phumzile 157, 165–6, 170 OLGA (Organization of Lesbian and Gay Activists) 188 openness 7, 89, 102, 115–16, 284 Opesen, Chris Columbus 6, 8, chapter 8, 281, 290 orphans 5, 23, 27, 29, 36, 41–3, 60, 101 Ostergard, Robert 20 Oxfam 287 PAC (Provincial Aids Council) 105–6 Papua New Guinea 22, 31 Pasuk, Pongpaichit 260 partnership 278 participation 7, 102–3, 247 patent regulations 13, 225, 236, 261 patriarchy 136, 141, 151–2, 159, 187 struggle against 9 Zulu traditions 150 Patterson, Amy 98, 100, 103, 112, 118 PEPFAR (Presidential Emergency Program for AIDS Relief) 90–2, 291–2 PHA (People with HIV network) 262, 264 pharmaceutical industry 13, 200–1, 225, 228, 236, 238, 281, 286 Abbot 255 Boehringer Ingelheim Pharmaceutical Corporation 124 Bristol-Myers Squibb 261 GlaxoSmithKline 255 see also drugs PLI (Philly Lutaaya Initiative) 87 PLWHA (People Living With HIV/AIDS) 66, 105–6, 110, 114–17, 123, 127, 243–6, 256, 258–69 Poku, Nana K. 6, chapter 4, 278, 280, 288–9 Polanyi, Karl 43 policies 7, 87, 98 policy networks 99 political opportunity structure 207 political culture 6, 42, 216, 288 leadership 102, 112, 116

society 100 will 113–14, 225, 294 politics 1, 3, 20, 38, 41, 293 of alliance 146 sexualization of 156, 172 population 59 POWA (People Opposing Women Abuse) 158 poverty 54, 97, 288 power 284 imbalances 185 gender and global 143 see also inequalities prevention 21, 23, 62, 80, 90, 111, 123, 144, 165, 189, 209, 227, 245, 256, 283 private sector 81 Progressive Women’s Federation 152 prostitution 115, 183–4 see also sex workers public sector 73, 75–6, 80, 82, 99 Putzel, James 112, 117, 282 race issue 148, 290 racial capitalism 171 paternalism 159 rape 145, 151–3, 159, 289 anti-rape activists 158 ‘burn the bitch’ 159 capital of the world 147 Rau, Bill 78 resource mobilization 206 responsiveness 7, 102, 109, 112 Rhodes, Roderick A. W 99, 278 Richter, Marlis 143–4 risk society 19 Robins, Steven 9, chapter 10, 288, 290 rule of law 7, 102, 114 Russia 31, 37 Rwanda 20, 53, 58, 91, 98 SACP (South African Communist Party) 163 same-sex marriage legislation 157 SANAC (South African National AIDS Council) 103, 105–9 security 5, 17, 27–8, 39, 41, 43, 53, 98, 278–9 see also human security

Index Sen, Amartya 23 Senegal 21, 24, 53, 61 sexual culture 10, 15, 157, 161 equality; between homosexuals and heterosexuals 156; between men and women 156 minorities 115 responsibility 157, 170–1 violence 9, 145, 148, 151, 159, 185, 192, 289 see also gender sexuality 186 politicization of 156, 172 Sierra Leone 18, 52 Smith, Charlene 147–8 social capital 215, 265, 270 commitment 237 inequalities 210 movements 1, 10–12, 143, 156–7, 177, 199–201, 204–11, 219, 227, 230, 242–52, 260, 281, 284–7 science 2, 13, 81, 99, 142, 233, 277 theory 200, 204–6, 208, 219, 285 solidarity 251 Solomons 22 Somalia 53, 81 Sontag, Susan 20 South Africa 7, 8, 10, 11, 13, 21, 23, 40–2, 53, 57, 77–8, 97–118, 124, 144–6, 156–73, 177–93, 199–220, 282, 286, 290, 293 Institute for Strategic Studies 29 South African Development Community 143 SPEAK magazine 181, 184–5, 191 staff impacts 74 state activist 238 African 50–1, 280 capacity 72, 98, 100 constitution 114–15, 156, 237 independence 52 kleptocracy 53 militias 53 nation 280 node 294 political elite 52 failed 21, 24, 81

303

fragile 22, 29 hollow 6, 61, 65 structures 49 system 50 weak 6, 53–4 see also corruption stigmatization 20, 87, 115, 261 see also AIDS/HIV stigma Strand, Per 283 Strebel, Anna 183 Sudan 51, 53 support groups 260–2, 268 survivalist initiatives 10, 200, 202–6, 209–10, 216, 218–20, 285, 289 Swaziland 31, 56, 145 Sweden 13, 77, 282, 293 Switzerland 124 symbolic actions 286

TAC (Treatment Action Campaign) 10, 23–4, 42, 105, 114, 143, 156–7, 166, 172, 177, 199–202, 204, 208, 211, 214, 286–7 Tanzania 91, 124 TAP (Township AIDS Project) 185, 191 TASO (The AIDS Support Organization) 91, 105, 116, 133 Tenet, George 39 Terto Jr, Veriano 11, 12, chapter 14, 285–6, 294 Thailand 12, 21, 24, 28, 124, 255–271, 285–6 Thörn, Håkan chapter 1, chapter 16 TNP+ (coalition of Thai people living with HIV/AIDS) 256, 259, 261–6, 270 transmitted resistance 28 transparency 7, 62–3, 72, 83, 102, 108 treatment 209 activism 231, 235 Ante-Natal Care (ANC) 124–5, 130, 132, 136 coverage 111 Intra-Natal Care (INC) 124, 128, 130, 132, 136 Post-Natal Care (PNC) 124, 128, 130, 132, 136 see also ART and drugs

304 Index TRIPS (Trade-Related Aspects of Intellectual Property Rights) 238, 262 Tsabalala-Msimang, Manto 183 Turner, Thomas 53 Tutu, Desmond 115 UAC (Uganda AIDS Commission) 91, 103, 105, 107, 113, 116 UACP (Uganda Aids Control Programme) 89, 104 UDF (United Democratic Front) 181 Uganda 7, 8, 20, 21, 24, 37, 53, 75–6, 78–80, 82, 87–94, 97–118, 123–36, 256, 280–2 National Strategic Framework 93 Ukraine 24, 31, 37, 282 unemployment 168 United Kingdom 28, 31, 77 United Nations 18, 52 CHGA (UN Commission on HIV/AIDS and Governance in Africa) 57–8 General Assembly Special Session on HIV/AIDS 105 Security Council 18 UNAIDS (Joint UN Programme on HIV/AIDS) 6, 7, 30, 41–2, 80, 91, 98, 105, 111, 143, 146, 232, 255, 277 UNDP (UN Development Programme) 5, 17, 82, 97–8, 100, 117 Human Development Index 101 WHO (World Health Organization) 111, 146, 227, 232, 234, 255, 277, 289 Unified Health System (Sistema Único de Saúde) 246–7, 248 United States of America 18, 28–9, 124, 230–1, 285 USAID (US Agency for International Development) 91, 135 urban–rural divide 214 urbanization 131

UWO (United Women’s Organization) 181 van der Merwe, Willem 159, 161 VCT (Voluntary Counselling and Testing) 66, 124–5, 127, 136 Vietnam 23 voluntarism 203 Walker, Cherryl 187, 189 war on drugs 20 war on terror 5, 30 White, Luise 184 Whiteside, Alan 56, 142 WoMandla AIDS Network 149 Woman’s National Coalition 146, 182 women 59, 105, 124, 141, 146, 164, 218–9 movement 146–7, 149–53, 181–2, 189, 192 oppression of 290 sexuality 145 Women’s Equity Charter 146 Women’s Health Project 10 World Bank 6, 22, 63, 72, 83, 91, 97, 248, 256, 262, 264–5, 271, 277, 284 World Social Forum 1 WTO (World Trade Organization) 83, 281 Young, Crawford Yuval-Davis, Nira

53 146

Zaire 53, 180 Zambia 39, 58, 62, 77, 80, 82, 136, 145 Zartman, William 53, 61 Zimbabwe 14, 20, 23, 40–1, 51–3, 58, 145 Zintle, Themba 183 Zuluness 162 Zuma, Jacob 9, 10, 113, 150–3, 157–63, 171, 178, 192, 289 Zwi, Antony 183