Disability Studies Today

Disability Studies Today

Edited by

Colin Barnes, Mike 0/iver and Len Barton

polity

Copyright :,t) this collection Polity Press 2002 First published in 2002 by Polity Press in association with Blackwell Publishers Ltd, a Blackwell Publishing Compa ny. Reprinted in 1008

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Library of Congress Cataloging-in-Publication Data Disability studies today I edited by Colin Ba rnes, Mike Oli ver, and Len Barton. p.

cm.

Includes bi bliographical references and index. ISBN 978-0-7456-2656-7 (hc)-ISBN 978-0-74 56-2657-4 (pb) 1. Disability studies. 2. Sociology of disability. 3 . People with disab il ities I. Barnes, Colin. Il. Oliver, Mike. Ill. Barton, Len .

HV 1 56 8.2 0595 2002 305.9'081 6-dc2 1

200200 1 6 6 8

Typeset in 1 0 on 1 2 pt Sabon by Kolam Information Services Pvt Ltd., Pondicherry, India Printed in the Uni ted States by Odyssey Press Inc., Conic, New Hampshir� This book is printed on acid-free paper.

Contents

Contributors 1

Introduction Colin Barnes, Mike Oliver and Len Barton

2

American Pragmatism, Sociology and the Development of Disability Studies

VII

18

Gary L. Albrecht

3

Di s abi l it y Theory: Key Ideas, Issues and Thinkers

Carol Thomas

38

4

Disability and the Body Bill Hughes

5

Theorizing Divisions and Hierarchies: Towards a Commonality or Diversity? Ayesha Vernon and John Swain

77

History, Power and Identit y

98

6

58

Anne Borsay

7

Work, Disability, Disabled People and European Social Theory

120

Paul Ab berley 8

S hoot i ng for the Moon: Politics and Disability at the Begi nning of the Twenty-First Ce ntu r y Phi{ Lee

139

VI

9

Contents Academic Debates and Political Advocacy: The US D i sability Movement Harlan Hah n

10

Globalization and Disa bility Chris Holden and

11

12 13

Peter Beresford

Disability, Citizensh ip and Rights in a Changing World Marcia H. Rioux

1 •2 t •O

20

Emancipatory Disability Researc h

z;s

D isability, the Academy and the Inclusive Society Colin B a rn es , Mike 0/iver a"d Len Barton

2 '0

Geof Mercer

Index

2t l

Contributors

Paul Abberley is Tutor I Counsellor for the Open University, Milton Keynes, working in South Devon, England. Gary L. Albrecht is Professor of Public Health, Disability and Human Development at the University of Illinois at Chicago, United States of America. Colin Bames is Professor of Disability Studies at the Centre for Disability Studies, Department of Sociology and Social Policy, University of Leeds, England.

Len Barton is Professor of Inclusive Education at the Institute of Educa­ tion, University of London, England. Peter Beresford is Professor of Social Policy and Director of the Centre for Citizen Participation at Brunei University, England.

Anne Borsay is Reader in the Department of History at the University of Wales, Lampeter, Ceredigion, United Kingdom. Harlan Hahn gained his Ph.D. in Political Science in 1 964, M.S. in Rehabilitation in 1 983, and has published over a hundred journal

articles and seven books in the United States of America.

Chris Holden is a lecturer in Social Policy at Brunei University, England,

with research interests in the political economy of the welfare state and globalization.

vm

Contributors

Bill Hughes is Head of t he D i vision of S oc i o l o g y and Soc i a l Policy,

Gl a sgow Caledonian University, G la s go w, Sc o t l a nd .

Phil Lee is Head of the Centre for St ud i es in the S oci a l Sc i en c es ;lt Edge Hill College (Associ ate Col lege of the Uni versity of Lancaste r ) , Orms­ kirk, E ngla nd . Geof Mercer is Senior Lecturer i n th e Department of Sociology and Soc i a l Policy, Un i ve r s ity of Leeds, England. Mike Oliver i s Professor o f D isab i lity Studies in the School of Social Scienc e s a t the University of G reen wic h , England. Marcia H. Rioux i s Professor and Ch a i r of the S ch ool of H e a l t h Policy and M a n a ge m e n t at York U n ive rsi ty, Toronto, Canada. John Swain is Pro fe s so r of D i s a b il i t y and I n c l u sio n in th e School of He a l t h , Soc i a l Work a nd Education at t h e University of Nort h u m bria

in Newcastle, England.

Carol Thomas is Senior Lec t urer in Applied S oc i a l Science in the Depart­ me n t of A pp li ed Social Science at the University of L a nc as t e r, England. Ayesha Vernon is Senior Le c t u re r and Senior Research Fellow i n D i sabil­ ity Studies in t h e School of Health, Social Work and Education a t the University of North u m bria in Newcastle, En gland .

1 Introduction

Colin Barnes, Mike 0/iver and Len Barton

Over recent years the re has been an unprecedented upsurge of interest in the general area of disability amongst social scientists i n universities and col l eges across the world . There a re now 'disa bility studies' courses and spec ia l ist journal s in the United States and Canada ( Albrecht et al., 2001 ) , Britain (Barton and Ol i ver 1997), and Australia and New Zealand ( Sullivan and Muntford 1998). There are a lso networks of scholars studying disa bility in the Nordic countries (Tideman 1999) and throughout Europe ( van Oorschot and Hvinden 2001 ) . This has been accompanied by an increasi ngly expansive l iteratu re from a variety of perspectives. Recent examples include cultural studies ( Mitchell and Snyder 2001 ), de v elo pment studies ( Stone 1999), geography (Glee­ son 1999), history (Longmore and Umansky 200 1 ) , philosophy (Wendell 1996), social policy ( D rake 1999), social psychology (Marks 1999) and sociology ( Ba rnes et a l . , 1999). Perhaps i nevitably, with this heightened interest a number of important chal l enges and debates have eme rged which raise a number of important questions for all those interested in this newl y e m e rgent and increasingl y important field of enqu iry. This Reader a i ms to p rov ide an i ntroduction to, and an overview of, these concerns and controversies. Although the field is i n creasingl y inter­ dis c i pl i n a ry in nature, the emphasis is predominantly a sociological one, as it is ou r contention that socio lo gica l theories and insights, whether intentiona lly or otherw ise, ha v e and can continue to p l a y a crucial role in the development of disabil ity studies. Altho ugh the focus is primari ly on theoretica l innovation and advancement, the arguments p resented here

2

Colin Barnes, Mike 0/iver and Len Barton

have important politi c al and policy impl ications for both di s a h lcd a11d

non - di sa bled people.

Disa bil it y studies, like ethnic, women's, and gay and lesbian stud ies, has developed from a position of engagement and a cti v i s m rather tha n one of detachme nt . Thus, as editors, we have s o ught contributors who cou l d write from such a position. This is because it is o ur fi rm (.;Onv iction that this enhances, rather than detracts from , the q u al i ty o f the i r contr i­ butions, and that the dia logue within these chapters w i l l provide yer fu rther stimulus fo r the future dev e l op m e n t of disabi lity stud ies.

Background The incre a sed i nterest in d i sab il it y in the ac a demy should not be su rpris­ ing, given that there is now a growi ng recognition that it raises a n u m ber of i mpo rta nt theoretica l a nd e m pirical questions at both the indi vidual and the structural level that are not easi l y answered with reference to est a bl i shed w i s d o m . D isabi l ity is b o t h a common p e r s on a l e x pe r ience and a g lobal phen o m e non , with wi de s p read economic, cultural and political implicati on s for society as a whole. Pe o ple with accredited impai r me nt s have existed since the dawn of time, and have had a pres­ ence in all societies. Recent esti mates suggest that the re are around 8.2 million d isa bled people in B r i ta i n, 50 m i l l i o n i n the European Union and 5 00 m illion wo rldw i d e . Moreover, these figures a re set to rise d ra m ati c a l ly over the coming decades, both i n the rich, ' deve l oped ' nations of the m i n or ity world and in the poorer, 'developi ng' c o u n t r i es of the m a j o r it y world ( IDF 1 99 8 ) . 1n rich an d poor countries alike, disabled people a re amongst the poorest of t he poor ( Coleridge 1 993: Stone 1 9 99: WHO 2 00 1 ), which r a i ses a number of issu es for politicians and pol i c y makers a t a l l levels and in a l l states. Since its politicization in the 1 960s by d i sa b i lity activists and d is a bil ity organizations across the world, disability has beco m e a n i nc reas i ngly i mportant issue for politicians and policy makers at b o t h the national a n d the international levels. Many n a ti on a l governments now have some form of anti-discrim ination law or policy to secure the equal rights of disa bled pe opl e . Ea rl y examples i nclu de Britain's 1 970 Ch ron i ca l l y Sick and Disabled Person 's Act a n d the American 1 973 Rehabilitation Act. Although relati ve ly ineffective, both promoted i mp r ove d environmental access and the developme nt of more c om pre h e n si ve services for disa bled people. The latter incl uded the histo ri c Section 504 w hi c h prohi bited discrimi nation against disabled people in fede ral l y funded program mes.

Introduction

3

Government responsibility for securing equal rights for disabled people was formally recognized at the international level by the United Nations in 1 981, the UN's Inte rnational Yea r of Disa bled People . The following year the UN General Assem bly adopted by consensus a 'World Programme of Action Concerning Disabled Persons', outlining a globa l strategy o n the prevention o f disability and the real ization o f the full potential of disa bled people. The next ten years were designated 'The UN Decade of Disabled Persons'. Between 1990 and 1993 member states in close colla boration with i nternational disabled peoples' organizations devel oped 'The Standard Rules on the Equalization of Opportunities for Person s with D i sa bilities'. There are twenty-nvo Standard Rules covering medical and community- based services and facilities . The Rules were formally adopted by the UN in 1993 (WHO, 2001 ). The coming of disability studies Prior to the 1980s, one or two notable exceptions a side, academic interest in disabil ity was confined almost exclusively to conventional, individual i stic medical explanations, and even where others had become involved, they tended to reproduce disabi lity u ncritically within these frameworks. A classic exemplar i s found in the work of the influential American functionalist sociologist Talcott Pa rsons ( 1 951 ) , which centred on medicine as a mechanism of socia l integrati on and control. Since then various 'illness' perspectives have predominated in American sociology in particular. Initi a l ly, Parsons's (1951) interpretation of sickness as a social status and the rights and responsibilities assoc iated with the 'sick role' exerted a considerable i nfluence within sociology throughout the world. Subsequently, this work was supplemented by va rious interactionist and interpretive perspectives. For Parsons sickness, whether s hort or long term, is a deviation from the norm . Consequently the sociological analysis of the social responses to disab i l i ry became largely the preserve of soc iologists i nterested in the reaction to and m anagement of asc ribed social deviance. One nota ble exam ple is Erving Goffman's ( 1968) account of the i nteractions between the 'normal' and 'abnormal' entitled Stigma. Duri n g the fol lowing decade particular a ttention was pa id to the social construction of 'mental i l lness'. Examples include Thomas Scheff (1966) and D. L. Rosenhan ( 1 9 75 ) . Around the same time a psychoanalyst, Thomas Szasz ( 1 96 1 ) , had denied the very existence of mental illness, the validity of psychiatry as a legitimate medical discipl ine, and the reha bilitation potential of psychiatric hospita ls. For Szasz, the term 'menta l i llness' was a substitute

4

Colin Barnes,

Mike

Oliver and Len Barton

for a multitude of problems of li ving. The idea that menta l i l l ness an d other forms of ascri bed social deviance a re little more t h a n soci a l co n ­ structs gene rated by an i n c r easi n g l y dominant, mora listic soci a l o rde r was given a further boost by the writi ngs of the French p h i loso p h e r Michel Foucault ( 1 975, 1 979). Foucau lt's w ork was pa r ti ..:u l a r ly i nfluen­ tial on the development of postmodern thi n k i ng i n a varie ty of fie lds, i nc ludin g d isabi lity s t u dies, during the 1 990s, a s we shall sec i n s e v e ra l of the contri butions to this book. However, within sociology interest in the genera l area of 'disa bi l ity' inc r ease d during the late 1 960s and 1 970s with t h e p u h l i cat ion i n the United States of Robert Sc ott s The Making o f Blind Men ( 1 96 9 ) and Gary Albrecht's edited collection Th e Sociology of Physica l D isab il­ ity and R ehabilitat ion ( 1 976 ) and in Brit a i n of Mildred Blaxtcr's The Meaning of Disability ( 1 976 ) and Peter Townsend 's Pouerty in the United K ingdom ( 1 979 ) . But whilst each of these studies drew a t te ntio n to the va rious economic and social con se q uen c e s of the ascr i ption of a conventional 'disabled' identity, none made an y seri o us a tte m p t t o q u es­ tion its ideo log ic a l underpinnings: what has variou sly been called the 'individual', 'medical' or ' pe r so n a l tragedy' model of disabil ity. In sum, while this work recognized the significance of economic, socia l an d cultural factors in the production of disability, the causes of the wide­ spread economic and soci al deprivation encountered by disa bled people were located within the i n d i vid u a l and their i mpa i rment . The th eoretica l insights that had been applied to the concept of men tal i l lness w ere n ever extended to add ress other impairments, particularly p h ys i c a l di sa bi lity '. The challenge to orthodox views came not from w i t hi n th e aca d e m y but from disabled people themsel ves. Although the origins of politic a l activism amongst people with accredited impairments can be t r ac ed b a c k to the ni neteenth century ( Campbell and Oliver 1 996; Lo ngm ore an d Umansk y 200 1 ) , it escalated significantly during the 1 96 0 s and 1 9 7 0s . Inspired by the pol itica l and soc ial upheavals of th e perio d, d i s a ble d p eople b eg a n to organize c olle ct i vely in i ncreasi ngl y large n um bers to protest against t he i r incarcera tion in re s iden t i a l institutions, the i r poverry and the discrimination they encountered . The pattern is de m onstrated across the United States, Canada and various cou ntri es throughou t Eur ope Notable early examples i nc lude t he Am e r ica n In dependent Living Movement and the Swedish Self Advocacy Movement, as well as the formation of The D isablement Inc o m e G r ou p ( D I G ) a nd th e U nion of the Physical ly Impaired Against Segregation (UPIAS) in Bri tain ( Camp­ bell and Oliver 1 9 96 ) . But the British e xperience i s especially important, si nce i t g ene ra ted a r a d ical and controver sial new a pp r oach to th e ory and p r ac ti ce now '

'

.

Introduction

5

generally referred to as 'the social model of disability'. Here the activities of grass roots organizat ions controlled and run by disabled people, such as the UPIAS and the Liberation Network of People with Disabilities, are especially important. These and similar organizations provided the fertile grou nd in which disa bled activists could explore and reconfigure the whole notion of d isa bili t y. These 'organic intellectuals' (Gramsci 1971) produced an i mpressive body of work, the impact of which is only now being fully appreciated. Key texts include Paul Hunt's edited collection of disabled people's narratives entitled Stigma: The Experience of Disability (1966), UPIAS's Fundamental Principles of Disability ( 1976), Vie Finkel­ stein's Attitudes and D isa bled People (1980), Alan Sutherla nd's Disabled We Stand (1981 ), Mike Oliver's Social Work with Disabled People (1983) and The Politics of Disablement ( 1990). Drawing im p lici tl y, if not explicitly, on bo th personal experience and soc i olog ical insights, this l iterature con stitutes a direct challenge to con­ ventional thinking and practice on disabil i ty. For examp le , although not a sociologist, Paul Hunt, a resident in a residential home for 'physically d isabled people' during the 1950s and 1960s, 'read a lot to s upp le me nt his curta iled education' and was 'especially interested in the social and psychological aspects of disablement' (Hunt 1966: 144 ) . Moreover, Fin­ kelstein's early work is heavily i nfluenced by the writings of Karl Marx and Friedrich Engels (see Feuer 1969). As noted earlier, traditional ap· proaches centred almost exclusively on individual li m it ations , whether real or i magined, as the princ i pal cause of the m u l tiple deprivations encountered by disabled people. By contrast, the social interpretation of disability argues that peop le with accredited or perceived impa ir· ments, regardless of cause, a re disa bled by society's fai l ure to accommo· date their needs . This approach does not deny the signi ficance of impairment in disabled people's lives, but concentrates i nstead on the various ba rriers, economic, political and social, constructed on top of impairment. Thus 'disability' is not a product of individua l failings, but is socially created; explanations of its c hanging cha racter are found in the organization and structures of society. Rather than id en tif ying disability as a n individual li mitation, the s ocial model identifies society as the problem, and looks to fundamental pol itical and cultural changes to generate solutions.

Disability studies and the academy None the less, although the emergence of the soc ial model of d isa bi li ty provided the ' big idea ' (Hasler 1993) for the mobi lization of disa bled

6

Colin Barnes, Mike 0/iver and Len Barton

people across the UK duri ng the 1 9 80s and 1 9 90s, it was slow to find acceptance in sociology departments in British un iversities. T h i s is espe­ cially surprising given sociology's traditional focus on soci a l inequality and divisions associated with social class, gender and race. Studies of disabi l i ty have been typical l y situated within the context of 111 ed ical sociology and the sociology of health a nd illness courses where i nrerac­ tionist and phenomenological perspectives have preva iled. These have documented the impact and meaning of the onset of spc<.:ific acute and chronic i l l ness. This has been accompanied by a largely athcore tical tradition of socio-medical research driven by practica l mcd 1 c a l and hea lth service concerns. The outcome i s an extensive literatu re that chronicles the extent and nature of chronic i llness, its conseq ue nc:es for daily living, and its impact on social relationships, the sense of self and identity (Williams 1 997) . Consequently, despite the sociological insights of social model th inking, Britain's first disability studies course was not developed within a sociology department or even within a conventional university setting. It w a s con­ ceived and produced by an interdisciplinary team at the Open Uni versity ( O U ) in 1 9 75 . A key figure in the development of this course was a disa bled South African clinical psychologist, Vie Finkelstein; he was also a n anti­ apartheid and disability activist, and a founder member of the U PIAS. The OU provided an appropriate setting for this new course, as its e m e rgence signalled a radical new approach to university ed ucation. lt began oper­ ations i n 1 9 7 1 , and had no formal entry qualifications apart from being over 1 8 , resident in the UK, and competent in English. Pioneering a variety of multi-media teaching strategies and distance learning techniques, the OU provided unprecedented opportunities for all those disadvantaged by Britain's education system, includi ng disabled people. The course attracted more than 1 ,200 students in its first year. These included professi onals, voluntary workers and disabled people from all over the country. Entitled 'The Handicapped Person in the Community', its stated aim was to help students improve thei r ' professional and s ocial skills i n order to assist handicapped people to achieve maximum aottmt­ omy' ( Finkelstein 1 997: 4 1 ; emphasis added ) . From the outset the course was criticized for its 'sociological bias' ( finkelstein 1 997: 46 ) . 1t was updated twice before its abolition in 1 994, and each time more and more disabled people were involved in the production of course materials. The final version of the programme was re-titled 'The Disabling Societ:t ', to reflect its wider content. Over the years the OU team generated a wealth of material, which provided the basis for the development of a w hole host of disability studies courses and professiona l training schcm� s a t both the undergraduate and postgraduate levels in mainstream c oll eges

Introduction and uni versities across the UK. Nota ble examples include Handicap in

7 a

Social World edited by An ne Brechin a nd Penny Liddiard ( 1981) and

Disabling Barriers - Enabling Environments edited by John Swain, Vie Finkelstein, Sally French and Mike O liver (1993 ).

By way of contrast, disability was introduced o n to the mainstream academic agenda in the United States a nd Canada in the 1970s. Aga i n the link between disability activism and the academy was i nstrumental i n this process. D isability rights advocates and academics concerned with dis­ ability issues cam e together at numerous conferences and discovered that they shared similar concerns . Several were both advocates and academ­ ics, 'much like the participants in numerous civil rights movements' . A maj or catalyst i n bringing these two groups together was the 1977 'White House Conference on H andicapped Individuals', which attracted o ver 3,000 delegates. In the same year the first disabi lity studies course was offered. It was in the area of medical sociology, and focused on the experience of li ving with a 'disability, a critica l life experience which many persons avoid recognising' (Pfeiffer and Yoshida 1995: 476). The main tutor was a disabled person. In 1 98 1 a disabled sociologist and the chairperson of the Medical Sociology Section of the American Sociology Association, lrving K. Zola, founded the Disability Studies Quarterly and eo-founded the American- based Society for D i sability Studies. In the same year twelve d isabi l ity studies courses were being taught in American institutions. By 1986 the number had risen to 23 (Pfeiffer and Yoshida 1995). As in the UK, these early activities generated a small but significant body of work. Examples include Frank Bowe's Handicapping America (1978) and Zola's Missing Pieces: A Chronicle of Living with a Disability ( 1982). These and other studies drew attention to the disabl ing tendencies of American reha bilitation programmes as well as in American society. However, this literature, along with American approaches generally, fa iled to recognize the significance of the distinction between impairment a nd disability that characterized the British social model approach. In keeping with the traditions of American pragmatism, the a rguments for civil rights for disabled people were li nked with a minority group approach, rather than providing a comprehensive theoretical explanation for disability and the exclusion of disabled people from the mainstream of everyday life. Moreover, it has recently been suggested that socio-political interpret­ ations of disabil ity have hitherto had relatively l ittle impact on American sociology ( Gordon and Rosenblum 200 1 ) . However, over the last few years, a contrary and more radical perspec­ tive has emerged, championed by a small but vocal band of predom in­ a ntly disabled scholars, many of whom are based in the humanities a nd

8

Colin

Barnes, Mike

Oliver and Len Barton

cultural studies fields, in universities in N orth America a n d A us t ra las i a . This h a s led to a grow i ng demand for t h e development o f a m o re crit ic a l , interdisciplinary field of enq u i ry more in keeping w i t h the soc i o - pol i ti c a l position associated with t h e soci a l model approach ( R ioux and B a ch 1 994; Davis 1 995; Meekoshe and Dowse 1 997; L inton l 99 H ; A lbrcc ht et al. 200 1 ) . These initiatives provide increasingly common g ro u nd be ­

tween academics a n d resea rchers in the disabi lity studies field, a n(.l sig ni fy a growing i nterest in the social-political approach pi onee red by Briti s h writers. All of which has stimulated lively debates a bout the best way s forward for the future development of the social model of disa b i l ity an d the relations between disa bility activists and academ ics. It is t hese d e­ bates which form the starting point for the collection of pa pers th at follow.

What is disability studies, and how is it reflected in this book ? In many w a ys this collection charts the changing nature of disability studies: that is the transition from a rel atively stra ightforward dem an d

by d isa bled people for a s h i ft in emphasis away from the individ u a l an d on to the structural and cultural forces that shape their l ives into a n increasingly complex body of knowledge . For t h e originators of the O U

course, disabil ity studies concerned the 'study of disabled peopl e's l i fe­ styles and aspirations' ( Fi n kelstein 1 997: 3 7 ) . As a conseq uence, th e content of the OU course, and the few others that were deve loped from it i n Britain during the 1 980s, was concerned primari l y with soc i a l po lic y concerns a nd the practica l ities of coming to terms with a di s a bled l i fe­ style in a world designed a l most exclusively for non-disa bled l i ving. The esta blishment in 1 986 of the first international journal devoted exclu­ sively to disability issues, Disability, Handicap a nd Society, rename d

Disability and Society in 1 99 3 , by two of the co-editors of this book, Len Barton and Mike Oliver, provided a n appropriate forum for the further development of a truly comprehensive ' disa bility theory ' . This was forthcoming i n 1 990 with the publication o f O l i ver 's Th e Politics of Disablement. D rawing on a variety of influences including personal experience, the writings of disabled people such as Finkelstei n and Hunt, and the sociologica l insights of Marx, Auguste Comte ( Len ze r 1 975 ) and Antonio Gramsc i ( 1 97 1 ) amongst others, the book p rovides a theoretical explanation of the material ist and ideological foundati ons upon which contemporary responses to disabil ity are based. Generally associated with the social model of d isability, this book has h ad a

Introduction

9

considerable i nfluence both within and without universities and colleges across the world . As well as prov i d i ng a much -nee ded theoretical d imension to the disa bil ity studies agenda, the book gener ated considerable d eba te amongst both activists and academics al ike, not least concerning the role of non-disabled academics and previous studies of the experience of impairment. Other concerns have been expressed rega rding the social model's apparent neglect of the experience of impairment, the body, and questions of difference in relation to gender, ethnicity, sexuality and social class. Equally i mportan t is the contention that the largely materi­ alist interpretation of h isto ry genera ll y associated with social model writings is overly s i mplis ti c. This is said to undermine the importance of cultur a l factors in the oppre ssion of disabled people and to over­ emphasize the roles of paid work and the disabled people's movement in the s tr uggle for equality. More recently, questions have been raised regarding the social model's Anglo-American leani ngs and its potential inapplicability within a majority world context in terms of both policy and pol i tics . All of which raises further issues regarding the social model's use va l ue as a mea ningful theoretical base upon which to conduct soc io ­ logic al research. It is these issues and concerns t hat und e rlie th e ch apters for this b ook. In chapter 2 Gary Albrecht argues that the development of disability studies should be examined and understood in context. He d isc usses how Amer i can pragmatism and soc iology influenced its develop ment in the United States and d i rectly or i nd irectly addresses a n um be r of important q uestions. These include the c on ten tion that t hose involved in disa bi lity studies share a common discourse, that leaders and spokespeople in the field represe n t all disa bled people, and that only disabled people can effect iv e ly understand disability and con tr i bu te to th e development of the disc i p l ine . Other conce rns include whether disa bility studies share a common h istory and intel lectual traditi on ac ross countr i es a nd th rough ­ out h istory, and whether a d is ab i l i ty stud ies perspective can generate an agreed agenda for health and welfare p ol icy. In response Al brecht a rgues that pragm atism had a pr ofo und influence on American thinking, social pol icy and world-view. When combined with the e a rl y devel opment of Amer i can sociology - n ota bly inc l uding survey research and the interactionism of the Ch icago school - it pro­ vided a broad framework and m ethodology for a d dressing disability issues. He also shows how the American Independent Living Move ment exerted politica l pressu re in the American context, an d shaped disa bility studies a s a field. He concludes by suggesting t hat disability studies in the

10

Colin Barnes, Mike Oliver and Len Barton

United States have been characterized by a historica l insen s i b i l i t y ,wd a disconcerting insularity. He mainta i n s that a respectfu l dialo�uc bet w een scholars, pol icy makers a nd activi sts might address these conce rns. A similar theme emerges in the third cha pter, by Carol Thoma s . She focuses on the reconceptualization of disa bil ity by main ly British w r i te rs. In her review of the emergence of disabi lity studies as a n a l·a demic discipline, she centres on various developments surrounding the soc i al model . She maintains that in the early stages the flesh that was added to the bones of the model had a materialist cast. Here the roots of rhe socially engendered restrictions on activity experienced by people with impairments are sought i n the social relations of the capita list system of commodity production. Contemporary exclusion is located in the oper­ ation of socially created ' socia l barriers' . More recently, she argues, and as disability studies has gathered strength, other theoretical perspectives, much influenced by social constructionist thought, have also made thei r presence felt in disability studies. The social m odel itsel f has been criticized and vigorously defended. Ensuing debates about disability have demanded an engagement w i r h the significance of culture in the creation of disability and with the m.mer of impairment itself. The intersection of disability with other forms of oppression - gender, race, sexual orientation and to a lesser extent social class and age - has been placed on the agenda by disabled femi n i sts and those who are of a more postmodernist persuasion. This has dema nded that the lived experiences of categories of d isabled people ( men, women, straight, gay, and impairment-specific groups such as people with ' le a rn ­ ing difficulties' or 'mental health' system users and survivors) be better understood, and, in a postmodernist sense, that these categories are themselves deconstructed because they are essentialist a nd discursively constructed. She argues that debates within disa bility studies and between disabil­ ity studies writers and those in other disciplines, and especially medical sociologists, are engines for the formulation of an even more sophisti­ cated materialist sociology of disability. For Thomas this must encom­ pass the furthe r recognition and theorization of the psycho-emotional dimensions of d isability: namely, those disablist practices that undermine the psychological and emotional well-being of people with impai rments - what disabled activists have referred to as 'internalised oppression' (Rieser 1 990). Bill Hughes takes up the question of impairment in the fourth chapter. He argues that the sociology of the body offers an opportunity for drawing disabi lity studies i nto ma instream sociology, but suggests that it has so far failed to do s o . He maintains that the problem for the l arter is

Introduction

11

that the accusations of disablism are warra nted, since it has ignored the question of disability. Conversely, the problem for disability studies is that it has all but cut itself off from the possibility of developing a meaningful sociology of impairment. [n traci ng the development of orthodox, 'medical' sociological approaches to the study of the body, he maintains that, despite the partial advances offered by labelling theory and Goffman's study Stigma ( 1968), sociology has reinforced the physi­ cian's view that disability is a sickness . It is the a ntithesis of the concep­ tion of disability as a corporeal essence provided by disability studies, as it emerged from the social model of disability, that makes sociology a truly valuable frame of reference for reflections on disability. However, the social model pushed the study of impa irment to the fringes of disabil­ ity studies, and it is only recently that it and the sociology o f the body ha ve combined to try to map out the case for a sociology of i mpairment. D rawing on research that examines the multiple oppressio n encoun­ tered by disabled women from minority ethnic communities, Ayesha Vernon and John Swain remi nd us in chapter 5 that disabled people will not judge disabi lity theory by its contribution to academic or re­ search d iscourses, but ultimately by its role in initiating social change. It is in these terms that they a rgue that a consideration of socia l divisions needs to i n form the development of disability theory. Agai n feminist and postmodern insights are pertinent: in particular, the recogni tion of the contradiction that women are simultaneously united through the imbal­ ance of power relations between women and men in the economic and social structures o f society, but di vided through multiple social divisions. They a rgue that sim ilar contradictions a re relevant to a n understanding of the oppression experienced by disabled people. They mainta in that the challenges of addressing the contradictions between commonality and diversity are critical to the future development of disability theory. In order to theorize and promote the development of a meaningful inclusive society, the relationships between disa bility, ethnicity, sexuality, age and gender must be critically exami ned. In the follow i ng chapter Anne Borsay draws our attention to the poi nt that history is a m i ssing piece of the j i gsaw in disability studies. She argues that whi lst the field has expanded from its origins in social theory and social policy to i nclude politics, cult ure, leisure and the media, historical perspectives across the entire range of disabled people's experi ­ ences are virtually non-existent. This, s h e contends, is d ue t o the incom­ patibilities between sociology and h istory. Hence, an evaluation of the historical models devel oped by social scientists is used to launch a social history of disabil i ty in wh ich materialism and culturalism a re comple­ mentary rather than m utua lly exclusive. A comprehensive historical

12

Colin Barnes, Mike Oliver and Len Barton

su rvey is not attempted . I nstead , atten tion is cen tred on the i n re r face

between physical impairment, cha r i ty and medicine in the l a te n i netee nth and early twentieth centuries. Demonstrating the usefu lness of h i storical

sources, moral and medical su rvei llance proced ures and the ensu i ng resi stance strategies are examined. The cha pter concludes by e x ploring the place of the past in shaping present responses to, and the iden r i r i e s of, disa bled people. I n chapter 7 Paul Abberley argues that if we are to expla i n disa b i l i t y a s a form of soc i a l oppression, then we must de ve lop a n understa n d i n g of what society m ight look l i ke i f people with impairments are not to be disabled. This is necessary if we a re to develop effective pol ic ies to combat social exclusion . To achi eve this, he considers how two fo r ms of classical social theory, one conservative a nd the other radic a l , ad d ress the relationship between work and social i nclusion. He mainta i n s that, despite their d i fferences, they are sim i l a r in the sense that both i m pl y the inevita bility of socia l exclusion of some people with impa irments in any possible society. He draws upon feminist approaches to provide

a

v i s i on

of a more inclusive society in which work is not regarded as t he de fi n i ng characteristic of full social inclusion. The practica l application of such a view is the advocacy of a d ual strategy that takes account of those who

can work and valorizes the non-working l ives for those who are una ble to. This he rel ates to the economic and soci a l upheavals of conte m pora ry

European soci ety. The next c h a pte r by Ph i l Lee charts the devel opment of pol i t ical activity around the issue of disabi l i ty, primarily, but not exc l usi vely, within the United Kingdom over the last two decades. He shows that whilst the disa bled people's movement has made considerable progress, not least in advancing t he socia l model o f disabil ity and placing civil rights for disabled people firm l y on the political agenda, rea l politi ­

ca l gains have been quite limited. Furthermore, translating the social mode l into practical administrative procedures is l i kely to remain p rob­ lematic. This is largely because the social fa bric of the last third o f the twentieth century has been transformed with the coming of postmodern­ ity and the ensuing lurch to the right of Britai n 's political institutions. Lee suggests that rather than i ntensi fy the shift towa rd incl usivity, th is has resu lted in heightened social divisions. He continues with an assessment

of whether there are grounds for optimism in four key areas: the em·iron­ ment, the world of work, anti-discri mination legislation and wider social policy developments. The chapter concl udes with the contention that

there are a n umber of political paradoxes that envelop the fu ture pol itics of disability and the disa bled people 's movement that are l i ke ly to i n h i bit, rathe r than enha nce, the prospect o f further su bstantial political ga i n s .

Introduction

13

We stay in the realm o f pol itics i n chapter 9, by the American writer and disa b ility activ i st Harl an Hahn. His analysis examines several differ­ ent concepts that have previously been adopted as a basis for improving the status of disa bl ed people, and explores innovative ideas and pro­ posals that might achieve this objective in coming years. Although an effort is made to include comparative data, this investigation focuses primarily on a case study of changes in d isability laws and program mes in the United States. The first section contains a brief history of disability policy, including the problems created by j ud icial resistance to anti­ discrimination statutes such as the 1990 Americans with D isabilities Act. An attempt is made to assess the strengths and weaknesses of proposal s that stem from the emergin g social model for research and advocacy on behalf of disabled people. The second section assesses the threats to the lives of d isabled citizens p osed by plans such as rationing health care, assisted suicide and other medical interventions founded, in part, on quasi-uti l itarian constructs and on cost-val ue analysi s . The final part investigates several possible innovations implied by the principle of empowerment. In particular, e mphasis is given to the possibility of en­ hancing the strength of disa bled citizens through permanent, systemic and institutional change i n the policy-making process. The tenth chapter, by Chris Holden and Peter Beres ford, addresses the issues raised by a globalized political economy and ensuing debates within the discipline of social policy concerning the i m pact of changes in the world market on the welfare state. They take up the claim that there has been little attempt to relate the emergent discourses on global ­ ization a n d post-industrial capita lism t o those of the disabled peoples' movement and disabi l ity theorists. They contend that globalization impacts powerfully on the lives of disa bled people, with reference to various globalized responses to disabi l ity and disabled people and thei r organizations. They postulate that, in turn, this holds out the potential for the generation of a meaningful challenge to the n arrowly conceived economistic way in which globalization has often been presented and understood. The chapter begins with a brief summary of some of the economic changes which have been associated with globa lization and the d ifferent positions wh ich have been taken on the significance of these w ithin the political economy literature. These are j uxtaposed with earl ier economic developments and their impl ications for disabi l ity policy global l y. The discussion then addresses the impact of globalization u pon welfare policy, and considers the significance of these debates for disabled people and the welfare state. The authors argue that j ust as the last century witnessed the generation of a meaningful political analysis of the role

14

Colin Barnes, Mike O liver and Len Barton

of industrial capita l ism in the creation o f di sa b i l i t y, so t h i s m u s t now be extended to t a k e account of the impact of globa lization a n d post­ indu s tri a l ca pit a lis m . lt must a ddress both national a n d int e rn a t iona l

inequalities, as well as not io ns of welfa re and we l fa re policy develop­ ment. The theme of globalization contin ues i n th e ne x t c h a pt e r in which Marci a Rioux discusses the relationship be tween disabil ity and the con­ cept of human ri gh t s within a n international context. She a rgues that the way go v e r nme n ts a llocate their resou rces reflects their interp reta t i o n of ci t i zenship , the notion of r i g h t s a nd t he role of the stat e . She suggests that the protection o f soci al r i ghts must be considered as a minimum standard of l i fe and an entitlement that is fun d amenta l to co n tempo ra r y notions of social justice. She d raws an im porta nt distinction between soc i a l and economic g l oba li z a ti o n . She draws our attention to the fact th a t the former is not so m uch a new idea but one that needs to be pursued with renewed vigour an d cla ri t y i n the face of the lat t e r. She a rgues t ha t disabled people have never been inc l uded in the m a i n strea m of social rights . Tr a d iti o nal ly thei r issues have been re lega te d to social develop­ ment, to charity, to di spe n sati on , or to the determination of their as­ s u m e d best interests. But e c o n o m i c liberalization and g lob a l i z ati o n h a ve highlighted the extent to which so me people are e x c l u ded . The denial of lib er t i e s and the restriction of pa rt ic ipa t i o n in socie ty, those fu nd a men tal freedo ms that govern ments promise thei r citize ns in dem oc ra c i e s , m ust a l so be protected for those wi t h inpai r m ents . C h apter 1 2 by Geof Mercer considers the reform u l a t i o n of disabili ty­ re l a ted research si n c e the coming of the soci a l m od e l of d i sabi l i t y. He p r ovid es a broad o v e rvi ew of th e growing c r i ti q u e of e s ta b l i s h e d ways of re sea rchi ng d is a bility in the latter half of the twentieth cen t u ry from disabled peop l e a n d t h ei r orga ni z a t io n s . The st a rt ing poi nt is t h e re­ foc u si ng of s tu d i e s of d i sab i l it y away from the ways in wh i c h i n d ividual limitations cont ri bu te to th e exclusion o f disabled people from everyday social a ct ivi t ies , and towards the ways in which environmental and cultural b a r r iers e ffec t ive l y d i sa b le peo p l e w ith impai rme nts . He shows how the coming of the social model stimulated the nurturing of a new re search p aradigm that is informed by similar emancipatory i n tentions. A review of key issues pertaining to i ts development is p rov i de d with pa rt icul a r re fe ren c e to the Bri t is h li tera t u re. The discussion is located within competing pa r a d i gms of social in­ quiry. D r awi ng on the w ork of cr i t i c a l theorists, Mercer e xp l o res the e manc ipa tory claims of this new app roa c h to r esea rch i n g d i sa b i li ty issues. In c on tra s t to the more recent, overly pessi m istic s uggestion that emancipatory d isa bi l i t y research might p rov e to be n ot h i ng more or less

Introduction

15

than an 'impossible dream' ( Oliver 1 999) he argues that disabi lity re­ searchers are engaged in the advancement of both theory and practice . He concludes by suggesting that in order to sustain this momentum, disability researchers must devote far more attention to established methodological considerations and concerns. In the concluding chapter we begin by arguing that, given the i ncreas­ i ng interest in disability studies within the academy, it is essential that academics maintain strong links with disabled people and thei r organiza­ tions . We examine the ways in which these interactions are currently being developed. We argue that further interaction is essential i f we are to cultivate a more comprehensive understanding of the process and experi­ ence of disability and the ongoing excl usion of disabled people from the mainstream of everyday life . Finally, we examine some of the encroach­ ing economic and political forces that are likely to influence the shaping of this hitherto m utually beneficial interface.

REFERENCES

Albrecht, G. L. (ed.) 1976: The Sociology of Physical Disability and Rehabili­ tation. Pittsburgh: University of Pittsburgh Press. Albrecht, G. L., Seelman, K. and Bury, M. (eds ) 2001: Handbook of Disability Studies. London: Sage. Barnes, C., Mercer, G. and Shakespeare, T. 1999: Exploring Disability: A Socio­ logical Introduction. Cambridge: Polity. Barton, L. and Oliver, M. (eds) 1997: Disability Studies: Past, Present and Future. Leeds: Disability Press. Blaxter, M. 1976: The Meaning of Disability. London: Heinemann. Bowe, F. 1978: Handicapping America. New York: Ha rpe r & Row. Brechin, A., L i ddia rd , P. with Swain, j. 1981: Handicap in a Social World. Sevenoaks: Hodder and Sto ughto n in association with the Open University. Ca mpbe l l , J. a n d Oliver, M. 1996: Disability Politics: Understanding Our Past, Changing Our Future. London: Rourledge. Cole ridge , P. 1993: Disability, Liberty & Development. Oxford: Oxfam. Davis, L D. 1995: Enforcing Normalcy: Disability, Deafness and the Body. London: Verso. Drake, R. 1999: Understanding Disability Policy. London: Macmillan. Feuer, L. S. ( ed. ) 1969: Basic Writings on Politics and Philosophy: Karl Marx and Friedrich Engels. Glasgow: Collins. Finkelstein, V. 1980: Attitudes and Disabled People. New York : World Rehabili­ tation Fund. Finkelstein, V. 1997: Emancipating disability studies. In T. Shakespeare (ed_), The Disability Studies Reader, London: Cassell, 28-49.

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Foucault, M . 1 975: Th e Birth of the Clinic: An A rcheolog)' of Medtc
Books.

Hasler, F. 1 9 93: Developments in the Disabled Peo p l e 's Movement. I n J. S wain , V. Finkelstein, S. French and M. Oliver (eds ), Disa b ling Barriers - l:na bling Envtronments . iondon: Sage in Association with the Open U n ive r si t y, l ?!l- 8 4 . H unt, P. ( ed . ) 1 9 6 6 : Stigma: The Experience o f Disa bili ty. London : ( ;cof frey Chapman. IDF 1 99 8 : \Vorld Disa biliy R eport. Geneva : International D i sa b i lit y Forum . lenze r G. (ed . ) 1 97 5: August Comte and Positit1ism: The Essential Writmgs. New York: Harper Torchbooks. linton, S . 1 9 9 8 : Claiming Disability. New York: New York Uni versi ty Press. longmore, P. L. and Umansky, L. (eds) 20 0 1 : The New Disability History: American Perspectives. New York : New York University Press . Marks, D . 1 999: Disability: Contro!lersial Debates and Psychosocial Perspec­ ti!les. London: Ro u r l e dge . Meekoshe, H. and Dow s e , L. 1 997: Ena bling citizensh ip: gender, disa b i l i t y and citizenship i n Australia. Feminist Review, 57 ( Autumn), 45-72. M itchel l , D. and Snyder, S. 200 1 : Narrative Prosthesis: Disability and the Dependen c ies of D iscou rs e . Ann Arbor: Un iv e rs i ty of M ichigan Press. Oliver, M . 1 9 8 3 : Social Work with Disabled People. London: Macm i l l a n . Oliver, M . 1 9 9 0 : The Politics o f Disablement. Basingstoke: Macmillan. Oliver, M . 1 9 99: Final accounts with the pa ra s ite people. In M . Corker and S. French (eds), Disability Discourse, Buckingham: Open University Press, ·

1 8 1 -93.

Parsons, T. 1 95 1 : The Social System. New York: Free Press. Pfeiffer, D. and Yoshida, K. 1 99 5 : Teaching d i sabi l i ty studies in Canada and the USA. Disability and Society, 1 0(4), 475-500. Rieser, R. 1 990: Interna lised oppression: how it seems to me. In R. R iese r and M . Mason (eds), Disability Equality in the Classroom: A Human Rights Issue, London: Inner London Education Authority, 29-32. Rioux, M . H. and Bach, M. 1 9 94 : Disability is not Measles. Ontario: York University, Roeher Institute. Rosenhan, D . L. 1975 : On bei ng sane i n i nsane places . In S . Dinitz, R. K . Dynes and A. C. Clarke (e ds ), Det,iance: Studies in Definition, Management and Treatment, New York: Oxford Un i ver s i ty Press, 279-8 1 .

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T . 1966:

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Being Mentally Ill: A Sociological Theory. L ondon: Weidenfeld

& Nicolson.

Sc o tt, R. 1969: The Making of Blind Men. London: Sage. Stone, E. (ed.) 1999: Disability and Development. Leeds : Disa bility Press. Sullivan, M. and Muntford, R. 1998: The articulation and practice: the cr i ti que and resistance in Aote a r o a . Disability and Society, 13 (3), 183-9. Su th erla nd, A. T. 1981: Disabled We Stand. London: Sou veni r Press. Swain, ]., Finkelstein, V., French, S. and Ol i v e r M. (eds) 1993: Disabling Barriers - Enabling Environments. London: Sage in Association with the Open Univer­ sity. Szasz, T. S. 1961: The Myth of Mental Jll ness: Foundations of a Theory of Personal Conduct. New York: Dell. Tideman, M. (ed . ) 1999: Handikapp: synsatt p rinciper perspectiv. Stockholm: ,

Johanson & Skyttmo Forlag. Townsend,

P. 1979: Poverty in the United Kingdom. Harmondsworth: Penguin. Fundamental Pri11ciples of Disability. London: Union of Physically

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van Oorschot, V. and Hvinden, B. (eds) 2001: Disability Policies in European

K luwer law International. The Re;ected Body: Feminist and Philosophical Reflectio ns on Disabilit)'. Lon d on: Routledge. WHO 200 1 : Rethinking Care from the Perspective of Disabled People: Confer­ ence R ep ort and Recommendations. Geneva: World He a lth O r ga n iza t i on s D isa bi l i ty and Rehabilitation Team. Wil l iams , G . 1997: The socio l ogy o f disability: tow ar ds a materialist phenomen­ ology. In T. Sha kespeare (ed.), The Disability Studies Reader, London: Cassell, Societies. The Hague:

Wendell, S. 1996:

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234-44. Zola, I.

K. 1982: Missing Pieces: A Chronicle of Living with Te mple University Press.

Philadelphia:

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Disability.

2 American Pragmatism, Sociolo gy and the Development of Disability Studies

Gary

L.

Albrecht

Disability is increas i ngly in the publ ic consci ousness for a m y riad of reasons. As populations age and world news concern ing illness, disease and impairments is broadcast around the globe, disabilit y i s bec oming recognized as a universal experience ( Zola 1 9 8 9 ) . The visi b i l i t y of im­ pa irments, the personal experience of disabi lity in our lives, the e f fect s of the degraded environment, tobacco, HIV I AIDS, accidents, l a n d mi nes and civil wars on our well-being and that of others, vuln era bility of the food chain to disa bility-causing agents, neonatal intens ive care, and escalating health interventions for the elderly all contribut e to our aware­ ness of disability (Albrecht and Verbrugge 2000; Michau d et al. 200 1 ) . As these issues are played out in public, disabil ity becomes a case study o f t h e values, worth and position of people in a society. Indeed, a soci ety can be judged on how it treats its children, women, elderl y citize ns and disabled people . Disability studies developed as a field in response to the per ceived universality of the problem, academic interest i n explai n ing the place and meaning of disa bility in society, and activist expressions of emp ower­ ment, inclusion, normality and the politics of difference. Policy makers and politicians contributed to the growth of the field through their concern with the economic and social costs associated with disabil ity and public discussions of how government support might better be organized to plan for increased numbers of disabled people a n d the elderly ( Chard et al. 1 999; Blendon and Benson 200 1 ) . Dis ability studies,

American Pragmatism and Disability Studies

19

then, is an emergent field that spans the boundaries of academia, per­ sonal experience, political activism and public policy. There are six contentious propositions that shape discussion in the field: 1

2 3 4 5 6

people interested in disabi l ity share a common universe of discourse; leaders and s pokespeople in the field represent all disa bled people; only disabled people can effectively understand disabi l ity or contrib­ ute to the field; disability studies is an established field w ith a home; disa bility studies share a common history and intellectual tradition across countries and throughout history; and people in the field generally agree on health and welfa re policies for disabled people and what constitutes 'reasonable accommodation', 'empowerment' and 'quality of l i fe'.

These propositions provoke heated debates i n the d isa bi lity studies l it­ erature and the popular press over the experiences, meanings, context and consequences of disability ( Limon 1998; Barnes 1999; Greenhouse 200 1 ). They also represent the fault l ines in disabi lity studies, where politically correct values are applied to argue for a position or to silence dissent. For this reason, it is as i mportant to study the va lues of partici ­ pants i n the disa bility discourse, the politics a nd ideologies of the actors, and the attitudes, values, structure and culture of the society in which the discourse takes place, as it is to collect and consider evidence in support of a position. Although there is considerable disagreement among par­ tici pants in the disabil ity discourse, the passion of their a rguments attests to the vitality of the field and importance of the issues (Corker and French 1999; Altman and Barna rtt 2000; Al brecht et al. 200 1 ) . Whi le there are universa l questions that have been addressed across national bounda ries and perspectives, the maturation of a field is depend­ ent on historical context, experience, intellectu a l tradition, culture and the political economic system . The development of disability studies, then, should be examined and understood i n context. I wil l do this by discussing how pragmatism and American sociology influenced the devel­ opment of disability studies in the United States, and directly or i ndirectly addressed the six contentious questions posed above . First, I will consider how pragmatism shaped American thought, social pol icy and view of the world. Second, I will show how pragmatism combined with the early development of American sociology, i ncluding survey research and the social a rea studies and interactionism of the Chicago school, to provide a framework and method for addressing disability issues. Third, I will

20

Gary L. Albrech t

an a ly s e how t h e disability m o v e m e n t organized, exe r t ed pul i ti\.:a l i n flu­ e nc e in the American context, a n d shaped disa bi l i ty stu d i es as a field. Fourth, I w i l l consider how d i sa b i l i t y studies in the Un i ted S t ;t t t s w ere influenced by the p oli ti ca l economy, embodying the America n v a l u e s of r u gge d individualism, c a pit a l is m and democ racy. F i n a l l y, I wi ll rdlcct on the future directio n s of Ame rica n d i s a b i l i ty stu d ie s . ·

American pragmatism Pragmatism is a diverse p h i los op hy that has had a pervasive i n fl u e nce o n Am erican soci a l s c ie n ce a n d s ub s e q ue n tl y on d i sa b i l i t y studies . Pra g­

matism is a style of p h i los o phy initiated by C h a r les Sanders Jle i rce ( 1 8 3 9-1 9 14) a nd Wi l li a m james ( 1 842- 1 9 1 0 ) which d e e pl y i n f l ue n ced the work of Dewey ( 1 968-92) , Schiller ( 1 907 ) and M e a d ( 1 9 64 ) i n th e earl y twe ntieth c e n t u ry and the m o re re ce n t co n te m po r a r y p h i l osoph i c a l work of S e ll a rs ( 1 973 ), Quine ( 1 969), Putnam ( 1 9 78 ), Ro rty ( 1 979 , 1 99 1 ), Haack ( 1 993 ) and West ( 1 999). S i nce the tenets of th i s work raise many philosophies of sc i enc e and social policy questions, pragma­ t ism has deeply affected thinking in A m er i c a n social sciences and c u ltural studies.

Because of its multiple forms and re-inventions, however, it is d i ffi cult to characterize the work o f all pragmatists un de r o n e concept u a l u m ­ b re l l a . I n se a rc hing for a co mmon thread in t hi s work, S u s a n I la ack ( 1 996: 643 ) concl udes t h at pragmatism ' i s best characterized by the method expressed in the prag ma ti c maxim, accordi ng to which the m eaning of a concep t is d ete rmi ne d b)' the ex p eri e nt i a l or p r a c t i c al consequences of its a p plic a ti o n The e a r ly pragmatists worked in the context o f t h e Industrial Revolu­ tion and r a pid development of k n ow l ed ge in t he physica l sciences. They were attracted by t h e idea of ce rt a i n ty and t h e formulation of s c i e nt i fic laws t h a t had p r actic a l ap p li c a t i on s Peirce, for example, re a c t e d to t h e a priori methods t radi ti on a l l y favoured by m etap h y s i c i a n s by a rg uing for a scientific method wh e re the in qui rer is ready to 'drop the whole cart lo a d of his be l i efs, the moment experience is aga i n st them' ( Pei rce 1 9 3 1-5 8 : i. 1 4, 55). Acco rd i ng to his perspective, the sc i en ti fi c i n vesti­ gator is a c o n tri te falli bi list' in eval u ati ng the beliefs and e vi dence sh e enc ou nters . The pu rp os e was to e ncourag e schol ars to pursue truth in a d i s i n te r este d way and to p r odu ce theories and a b ody of w o rk that would wit h s t a n d multiple, severe tests. This a ppr oa ch to scientific m et ho d is co m p at i bl e with Popper's pr i n ciple of fa lsi fi c ati o n , where theor ies a re proposed and sub mi t te d ' to the severest test we can des i gn ( Po pp er '.

.

'

'

American Pragmatism and Disability Studies

21

1972: 16 ) . The attraction of this version of the scientific method is that it knowledge, realism and universality; truth lay in tested theory a nd in the 'facts' . William James's emphasis w a s d i fferent from Pei rce's. James stressed praxis, the practical consequences of believing in a particular concept or social policy. In discussing the complexities of metaphysical and moral questions, he says, for example: 'The pragmatic method in such cases is to try to i nterpret each notion by tracing its respective practical conse­ quences ' (james 1 907: 28 ) . James also recognized that there might not be scientific e vidence to settle every dispute. Therefore, he posited that 'religious beliefs' which in principle cannot be verified or falsified are often used to make decisions because they fit with the believer's life and have practical consequences . He also supported the notion that truth is socially constructed a nd can change over time. Both his emphasis on re ligi ous beliefs' and the social construction of truth acknowledge the subjective and relative aspects of knowledge. James's brand of pragma­ tism opens the door to later exp l or ati ons of th e subjective meanings of emphasized objective

'

experience.

John Dewey and F. C. S. Sch i l ler moved pragmatism in an i ncreasingly activist direction. Dewey did not engage in the 'quest for certainty' that captured the attention of Peirce. Instead, he recognized that knowing is i ntimately related to practice (Dewey 1 968-92) . He was a re fo rmi st, in that he a d voca ted that good theories are based on prac tic e , and are modified as experience with a programme demonstrates the success or fai l ure of an idea . Schiller ( 1 864-1 93 7) was more revolutionary than Dewey. He acknowledges the socia l construction of reality by arguing that truth is relative and means ' v al ued by us'. A proposition is true if it ' forwards our ends' ( Sc h il l e r 1 907: 8) . In terms of social activism, Schiller pointed out how values and subjective experience colour what we think of as bei ng true or right. A group of neo-pragmatists, including Rorty, Quine, Putnam and Haack, recognize that the 'objective ce rtitu d e' advocated by early prag­ matists is not a feasible goa l for science or epistemology. Yet, the y are keenl y interested i n the question o f truth, seeking to find a middle ground between dogmatism and scepticism (Haack 1 996: 6 5 6 ) . This work lays a philosophical foundation for many of the issues debated in contemporary cultural studies, incl uding the foll ow ing: What constitutes evidence? How is a text to be read? Who can spe ak about or understand the experience of another ? What are human rights? What is j ust in a given situation?

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Gary L. A lbrecht The confluence of pragmatism, American sociology and di sability studies

Pragmatism was influential in the development of s oc i o l ogy and su bse­ quently of disability studies in the United States, because it p ro v i ded a concept u a l framework for thinking about the critica l issues con fronting social scientists, and suggested the types of data a nd ana lysis t h a t should be used to co nst r uct arguments. Social scientists were concnncd with develop ing theories, methods and a body of kn ow ledge add ressing social behaviour that wo u ld be credi ble and u se ful Over the years, prag m a tism shaped the p u rs u it of these desiderata in the discipl in e of sociology i n three important ways. First, early pragmati sm emphasized that i f sociology is to be a sc i ence, it should fol low the 'scientific method' of the n atural sciences by e mbra­ cing the epistemological p r inciple of fa lsi fic ation. This princi ple, e l a bor­ ated and disseminated by Popper ( 1 972 ), suggests that scientists put fo r ward a theory, i n itially as an uncorroborated con j ec t u r e , and then test its predictions with ob se rvati on s to see if the theory stands u p to the test. If carefully designed tests of hypotheses p rove negative, the theory is experimentally fa l s ified, and the investigators will modify the theory or build a new one. If, on the other hand, the tests and data support the theory, scientists will c ont i n u e to use it on the basis of its unde fea ted hypotheses to further test and extend the theory. According to Pcirce, the extension of this approach leads to the development of ' laws', and points to what is true. Thus, pragmatism inculcated an early interest a mong sociolog ists in gathering 'objective' data through observations, s u rve y s and censuses that would describe social phenomena, help develop th eor y, and serve a s evidence testing an a rgument. Second, the pragmatists, especially William James, encouraged the a n c hor ing of analysi s in practical realities and social policies. James s ta te d that a pragmatist 'turns awa y from abstraction and insufficiency, from verbal solutions, from bad a priori reasons, from fixed pr i nc i p les closed systems, and pretended absolutes and origins. He turns towards concrete­ ness and adequacy, towards facts, towards action, and towards power' (James 1 907: 3 1 ) . Th r ough such arguments, James laid t he foundations for grounded theory, the study of social problems, observing behaviour and gathering data in the ' rea l' world, formulating social pol icies and testing their effects on behaviour and an examination of the distri bution and exercise of power in soc iety For James, pragmati sm involve d seei ng if theories and po l i c ies really made a difference. In this sense, James en c our­ a ged social action theo ry among pragmatists and sociologists alike. .

,

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Th ird, pragmatist thinking moved away from the strict 'objectivism' and application of the scientific method advocated by Peirce towards recognition of the importance of subjective experience, relativistic and culturally different conceptions of behaviour, paradigm shifts in the gathering and interpreting of i nformation, and competing communities of discourse . Rorty (1979, 1991) is an example of these positions. He dismisses claims to objectivity as wishful thinking, arguing that our stand­ ards of evidence and our scientific and social policy practices are cultural conventions. Rorty has been a powerful influence on cultural studies, i ncluding d isability studies, in so far as he stresses the importance of engaging in conversation about issues and analysing texts in an open d iscourse, taking into account the subjective differences and cultural grounding of the participants. This perspective in social science and the humanities high lights the reading o f situations and texts and analysis of both the observer I reader and that which is observed or is the text. Rorty's brand of positivism also emphasizes cultural and historical context. This approach to understanding raises important questions s uch as: Who has the right to speak and i nterpret? What constitutes a commu n i ty of dis­ course or a community of scholars ? What are the criteria of admission to such communities? How is an argument comprised and evidence pre­ sented that would convince others of its truth and usefulness? How do cultural context and history affect the definition of a situation and how the 'facts' are interpreted ? How are evidence, theory and argument translated into social policies that have the power to cha nge the behaviour of others and rearrange status hierarchies and the structure of i nstitutions ? In reviewing this broad range of pragmatic positions and their uses, it is noteworthy that there are not merely d ifferent, but radically opposed, forms of pragmatism. However, they do address many of the same funda­ mental questions of how we acquire and use knowledge, and they share the important principle that knowledge ought to be eva l uated in terms of its utility and the consequences of its application to practical problems. These three themes in pragmatism had a powerful impact on the development of sociology and later of disa bil ity studies in the Un ited States. They have conceptual and h istorical l inks to five methodological , substantive and t heoretical approaches to social research: quantitative, qualitative, historical / contextual, social action I social pol icy and inte­ grated work. Whi le there is considerable intermingling of these methodo­ logical approaches to social research, each has its own constituency undergi rded by a particu lar p h i l osoph y of science, i ntellectual context and projected use of the results. Quantitative research in the social sciences flowed easil y from the desire of sociologists to gain the status of scientists and have their

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di sc i p l i n e res pe cted for its rigour. A cco r d i ng to the Ji�:tates of the early pragmatists a n d the m e th od o l ogi es of t he natura l s�: i e nt i sts , t h e o ries should guide research, phenom e n a u n d er s t u d y must be measu red a c c u r­ ate l y, events a n d units counted, a n d hypothe s es tested in a d e d u c tive fashion. The U nited States Census, which bega n in 1 71.JO, w a s o n e of the early sources of such quantitative da t a . D u r i n g the last h u nd red years especially, t h e United States Public Health Service and medi�:a l scient ists h ave been inte rested in d e v e l opi ng epidemiological d a ta to iden t i fy p op u ­ l at i o n characteristics, define health problems, come up with s u i ta bl e interventions, and eve nt ua l ly assess the outcomes of those inte rve ntions. Quantitative socia l ep i d e m i o l o gy, s t rongly influenced by the socia l ecol­ ogy pe rs p ec t ive of the So c i olog y Department of the University of C h i �: ago in the 1 930s, was path break i ng i n exp l o r i n g the re l a t i o n s hip between social conditions and such social problem s as mental disorder ( Fa ris and Dunham 1 93 9 ) . This focu s o n quanti ta tive resea rch a ccord in g to th e ' scie n t i fic method' persists to th i s day i n American soci o l ogy . J o u rnals like the American Sociological Review and the journal of Health and Social Behavior a re rep l e te with a rticles using qua nt i t a t i ve method s to examine the re la t ions h i p between poverty, race, ge nde r, education, stress, access to resources, and em ploy m e n t and outcome vari a b l e s suc h a s discrimination, d i s pari t y in inco m e , access to opportunities, h e alth , well - be i n g and equal j ustice for all citize n s . Social science p u b l i shers like Sage Inc. have i n stitute d series of m e t h odologica l pri mers that guide researchers in how better to meas u re and analyse dat a , test h y poth­ eses and bui l d ever more sop his t icated models of in di v i d ua l , gro up a n d organizational behaviour. This vast l i t e r a ture confor ms to the spi rit of the ' sc i ent i fic me tho d ' propo s ed by Peirce a n d legitim ized by resea rch in t h e natural sciences. At the same time, much of thi s literature is con­ ce rned with social problems and issues of j ustice that carry forth a n o the r theme from the pra gm a t ists : the desire to m a ke a d i ffe re n ce a nd to j udge t he value of research by it p ractica l usefu l n ess . In the disability arena, these th e mes were al so carried over into re­ ha b i l ita t i o n and disa b i l ity research. I n the United States, reha bi lit ation r e search ty p i c a l l y meant medical reha b i l i tation of individua l s a fter tra u m a or the di ag nosis of impairme nt or social rehabil itation th ro ugh p h ys i ca l and occupational th e rapy and edu c a ti o n that would a l low i ndi­ v i duals to obt a i n a j ob or re tu rn to work. Medical re h a bi l itation re s earc h b urgeone d a fter the end of World War 11, and p a rticu l arl y from the 1 960s to the p re sent. This work was mos t often directed by physicians and a i m e d to acquire knowle dge that would improve fu ncti on a l stat us and pe rmit individua ls to l i ve independently i n t h e community. Socia l re­ h a b i l i tatio n research was often undertaken by eco n omis ts and resea rchers

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in vocational rehabilitation and speci al education, sometimes working in conj unction with physici ans to develop p rogrammes tha t would help impa ired and disabled people return to work . Thi s has traditionally been the major focus of the Veterans Administration and the branches of the Social Security Administration dedicated to disability. Medical researc hers employed the quantitative methods o f surveys, ta rgeted sam­ pling strategies , double-blinded clinical trials and evaluation studies to demonstrate patterns and outcomes that would help in implementing programmes to help disa bled people be more functionally independent. The social rehabi litation researchers, often inc luding sociologists a nd economists, also used quantitative methods and statistical models to determine which varia bles and interventions predicted return to work. Many disability studies scholars i n the United States were trained or heavily influenced by sociologists, so they carried over the social concerns and research paradigms from sociology to disabi lity studies. Quantitative resea rch in disability studies is an i l lustration of this influence. For example, Fuj iura and Rutkowski-Km itta (200 1 ) point out that counting disability is an important enterprise for disabled people, governments, policy makers and social scientists. Regardless of the heated debates over disabil ity definitions and who and what ought to be measured, if a ny­ thing, governments need to be a ble to identify and count disability if they are to p rovide health insurance and medical and social services and make the environment more accommodating. While there is deep concern over labelling, fai ling to take disabled peoples' experience into account a nd paying insufficient attention to the accessibility of the envi ronment, governments could not provide services o r even consider a l tering the environment unless they can identify disabled people and their needs . Fuj i u ra a n d Rutowski-Km itta o bserve that 'Although there arc notable exceptions, the organized political state exists to promote the well-being of its people. Data inform this process a nd help inform the planning and organization of state policy. Thus, the survei llance of health status is both an ancient practice and nearly universal among nation states' (2001 : 70). Furthermore, they agree with O bershall's contention ( 1972) that 'the demand for extensive and detailed i n formation by "social reformers, civic groups and philanthropists" was the foundation of much statistical work in the nineteenth century ' (Fujiura and Rutkowski-Kmitta 2001 : 70 ) . These goals of disa bility statistics still pertai n today. The difference is that current methodological and stati stical techniques allow research ­ e r s t o address social, cultural a n d environmental e ffects in a more preci se and integrated fashion ( Brown 2001) . This exercise has sti m ulated social scientists and disabil ity scholars to refine the theories a nd models which they use to understand disabi lity and its effects, health and social inter-

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ventions, the physical and soc i a l envi ronment, and the ou tcomes of different soci a l policies. Whi le the purposes of measuring di sa b i lit y and counti ng d i sa bled pe ople are re a sona bly clear, these activities are fraught with d i fficulty a nd controversy. This is because disa b i lity is a 'compl ica tt·d, m u l tidi­ mensional concept' ( Altman 200 1 : 97), the end purposes o f d i sability me a sures a re multiple, and identification ca n have negative conse­ quences, such as labelling and discrimination, for disabled people. De­ bates over these issues can be vividly seen in the ongoing cont roversies rega rding the World Health Organization's dev e l o pment a nd use of ICIDH c odes to c las s i fy disabi l ity and the Globa l Burden of Disease Project j ointly sponsored by the World Bank and the World Health O rganization ( Altm a n 200 1 ; Fujiura and Rutkowsk i-Km itta 200 1 ) . Regardless of ideological position or predilection for a parti c u l a r scien­ tific method, this quantitative researc h on disabi l i ty reflects the intlu­ ence of s oc iology and some key p rinc iples of p ra gm a t i sm o n disabi lity studies. Both the pragmatists and neo-pragmatists exert their infl uence on contempora ry sociol o g y and di sa bi l i ty studies. Among qua litative and cultural studies scholars today, there is a strong e m ph a sis on the social construction of reality, the importance of individual experience, culture a nd context in i nterpreting behaviour and texts, l i sten i n g to the ' voices' of the people being studied, and 'discourse' a m ong a n d between scholars and the people being studied. Harvard University and the Uni ve rsity of Chicago were tw o i nstitutions, among others, where pragmatism and qualitative a nd socio-historical research provi ded a foundation for entire a reas of s oc i o l ogic a l work and disability studies. This is not a teleological tale in which there is a direc t causal link between individuals, d i sciplines and departments. Nevertheless, pragmatism and co m pa t i ble soc i ological 'schools' have flourished at both Harvard a nd Chi ca go for yea rs. William ] ames was at Harv a rd at the turn of the centu ry, where he had a significant influence on n umer o u s soc i o logists, incl u d ing the extraordin· a ry African-American sc h o l a r W. E. B. DuBois ( 1 96 1 ) , who stu died with ]ames and called himself a 'realist pragmatist' (Kloppenberg 1 99 8 : 53 9 ) . Today Cornel West a n d H il a ry Putnam a re neo-pragmatists a t Ha rvard who h a ve an impact on current sociologists and cultural studies scholars, i ncluding William Wilson, a recent past president of the American Socio­ logical Associati on and Theda Skocpol. Wilson's research on the mean­ ing of work for inner city Blacks, social po l i c ies for poor minorities, and social j ustice is representative of this influence. Skocpol's contri butions have been i n understa nding the welfare state in h i storical and cultural context. Interestingly, both Wilson and Skoc po l came to Harvard from

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the University of Chicago, a nother intellectual centre influenced by prag­ matism. Two important early pragmatists, John Dewey and George Herbert Mead, did some of their most important work at the University of Chicago, where there seemed to be a commonality of interests between the pragmatists and groups of sociologists ( Bloom 2000) . As Abbott ( 1 999) points out, however, there was less a single University of Chicago 'school' tha n central themes and diverse groups of academics who made significant contributions to sociology in terms of social ecology, social psychology, demography and social organ ization. The interactionist perspective in sociology proposed in the work of Weber ( 1 946) and Simmel ( 1 95 5 ) emphasizes the i mportance of under­ standing the social world from the viewpoint of the individuals who act within it. This approach was influenced by Dewey and ela borated by Mead ( 1 93 4 ) and Blumer ( 1 96 9 ) at the University o f Ch icago into what is now known as symbolic interactionism. Blumer later moved to the Department of Sociol ogy at the University of California, Berkeley, where he trained many students in this research trad ition. Studen ts of Mead and Blumer a t the Univers ity of Chicago, l i ke Howard S . Becker ( Becker et al. 1 96 1 ), Erving Goffman ( 1 95 9, 1 96 1 ) and Anselm Strauss ( Strauss and Glaser 1 975; Strauss and Corbin 1 990; Strauss 1 993 ), used symbolic interactionism as a framework to produce path-breaking books in med­ ical sociology and in qualitative research methods. Symbolic interactionism is a form of socia l psychology that examines the interactions between people in terms of symbols, signs, gestures, shared rules, and written and spoken language . Symbolic interactionism was originally applied to analyses of indi viduals and groups, but only more recently to organizations and the more encom passi ng social struc­ ture. The essential point of th i s pe rspective is that people do not respond to the world directly, but instead place social meanings on it, organize it, and respond to it on the basis of these meanings. Thus, we live in a symbolic as well as a physical world, where social life involves a constant process of assigning meanings to our own acts and those of others and interpreting them within this framework. Other people use similar tech­ n iques to understand us and our behaviour. Symbol ic interactionism highlights subjective experience and the inte rpretation of social reality, but also allows individuals to take the place of others symbolically to better understand their behaviour. This perspective has been used by disability scholars to ask fundamental questions : How does an i m pairment become a disability? What does disability mean to people with different i mpairments and in diverse cul­ tures? What is the subjective experience of disability? How do others

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pe rceive, define and react to disabled people ? Is disa bility in the i n d i vidual, in the environment, or in t he interaction between the two ( l m ril· 2000 ) ? H o w do medical pro fes s ion a ls a n d service providers a c t towa rds d isa bled people, and why? By ad d ressi ng these questions from a symbolic i nterac­ tionist perspecti ve, d isabi lity scholars have deepened our theoretical and experiential understanding of what it means to be a disa bled perso n . Social i nteractionism is well equipped to analyse how social prohl ems, behaviour and institutions a re socially constructed. As Robertson ( 1 977: 1 3 5 ) aptly remarks, 'We are not born with any sense of time, of pl ace, or cause and effect, or of the society in which we live. We learn about these things through social interaction, and what we learn depends on the society in which we live and our particular place within it. ' Accord ing to Berger and Luckman n ( 1 96 6 ) , reality is socially constructed th rough three processes: externalization, objectification and interna l i zation. Externa lization occurs when people prod u ce cultural prod ucts th rough their social i nteractions. Examples of this in the disa bi lity arena a re lip reading and signing a m o ng deaf people a nd group cohesion among spinal cord inj ured individuals due to the visibility of, and meanings attached to, wheelcha ir use. Objectification occurs when these externa lized prod­ ucts take on a meaning of their own. For example, the wheelcha i r symbol is used worldwide to denote parking spaces and bathrooms t h at are intended to be available a nd accessible to disa bled people. Interna lization takes place when people learn p urported 'objective' facts about reality from others through the socialization process, and m a ke them a pa rt of thei r own subjective 'interna l' consciousness. Thus, individuals socialized in similar cultures share the same perceptions of reality, ra rely q uestion­ i ng where these beliefs originated, or why. Stigmatization of, a n d atti­ tudes towards, persons with mental illness are an example of such an internalization process. Within this intellectual tradition, lrving Kenneth Zola made a substan­ tial contri bution to the development of disability studies as a medical sociologist and a visibly disabled person. He was trained at Harvard in medical soci o logy, but his work is strongly flavoured with social inter­ actionism and the ethnographic work of Chicago sociologists. Zola's dissertation e x plored d i fferential percepti o n s of pai n and differences in behaviour when seek ing medical help among three diverse cu ltural groups in Boston: Irish-Americans, Italians and Jews ( Zola 1 966 ). His later work highlighted the subjective ex pe rien ce of disability, being an embodied su bject, and the universality of d isability ( Zola 1 989, 1 9 9 1 , 1 99 3 ) . H e was chair o f the Medical Sociology Section o f the American Sociological Association, fou n d er of Disability Studies Q11arterly, which publishes articles, personal statements, book and film reviews, and news

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o f interest to the academ ic disabili t y community, and a key mem ber of the disa bil ity movement responsible for t h e Americans with Disabilities Act of 1 990, accommodations in the e n v i ronme n t, and the emergence of disability studies as a field. He was one of the moving forces in establish ­ ing the Society for Disability Studies. Here was a scholar in the symbolic interactionist mould who inco rpora ted a c r itical component of pragma­ tism into h i s research by combining academic research and activism. He was, on t he one hand, a member of a Nationa l Academy of Sciences committee organized to identify the crit i ca l research issues in need of fundi ng and, on the other, an activist who could be seen dem onstr ating on the steps of a court-house a bout accessibility.

Social movements and politics As we h ave seen i n the case of Zol a , pragmatism and sociology were formative influences on the disability m o ve m ent . There is a myth that

si nce disabled people have a common e x perience a nd a si m i l ar view of their social worlds, orga n i zing a di s a b i l i t y movement to institute c han g es in soc ial pol icy and public attitudes is a natural and easy process. This my th does n ot reflect the rea lity. In the United States, disability groups originally formed around types of impairment, a ge, emp l oymen t status and m i l ita ry experience. There were, for example, powerful groups that coalesced a round visua l impairment, deafness, polio, spinal cord inj ury and mental illness. Some of these groups, l ike the March of Dimes, concentrated on the young, whi le others, like the Vocational Rehabi l itation Ad m i n i stration fo cu sed on re t urning d i sa bled people with skills and experience to the wo rk place Again, the Vetera ns Adminis­ tration is an enti re govern ment agency devoted to a ssisting veterans of military service with medical care and rehabilitation. These groups o fte n fought among themselves for the sca rce resources a vailable for medica l treatment, reh a b i l i tation, social services, i n de pen d ent l i ving and modifi­ cation of the environment. Behi nd the scenes, competition rather than c o o pera t io n was the rule of the day. That is why the convergence of these groups behind the Americans with Disabilities Act of 1 990 (ADA) was such news . Si nce Harlan Hahn has a chapter later in th i s book on disability politics and the disability movement, where he uses a mino ri t y group model to understand t h e evolution of the American disability movement, I w i l l keep my focus on how pragmatism and sociol ogy helped to shape disability studies and crystall ize the disability movement. From a social i nteraction ist perspective, the sel f that people present depends on the role -

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that they are playing. N ot all disa bled people have d i sa bi lity as t heir defining role. For example, in an examination of identity, roles and disa bil ity culture, Devlieger and Al brecht (2000) discovere d that inner city, disabled African-Americans who l i ved on the near west side of Chicago did not have a strong disabil ity identity or c l a i m a d i sabil ity culture. Instead , their master status was more likely to be A frican­ American, poor, survivor or gang mem ber. This is one of the reasons why the American disability movement is overwhelm ingly composed of white, privileged, educated adults with �·isible disabil ities . When these people speak for all disa bled people, many wonder whom they are representing. The disa bility movement leaders public ly preach unity and inclusion, but where are the poor, the people of colour, the ind i vid­ uals with non-visi ble disabilities and the intellectually disabled ? Power is about representation. If only some are represented in the movement, the others are without voice (Charlton 1 99 8 ) . The symbol ic interactionists have also noted that social life i s m ade predictable through shared expectations and rules. As indicated a bove, the members of the disability movement, often organized a round specific disa bil ities or issues, were in competition with other disab ility groups, and excluded those who did not share their disa bility or viewpoi nt. As a consequence, their impact was limited, and did not i nclude the majority of disa bled people in the nation. Erving Goffman ( 1 95 9 ) , using a d rama­ turgical metaphor, studied the aligning actions employed by p eople to redi rect potential l y disruptive interactions. He and other symbolic i n ter­ actionists suggest that finding a common identity and cause, orga nizing against an outside force, including people with the same inte rests, de­ veloping organizational signs, sym bols and culture, presenting a united front, and becoming pol itically astute are concrete actions that can be taken to unite groups. These are also the strategies most l i kely to p rod ut:e social change as expressed in public attit udes, laws, accessible envi ron­ ment and independent li ving. When the diverse disability groups recog­ nized that they had more to gain by gathering forces co-operatively and organizing behind a common set of strategies, they were a ble to ma rshal their energies, conceive a shared plan, take political actio n , change public opinion and s uccessfull y back the Ame ricans with Dis abilities Act. Following the dictates of social interactionist theory, leaders in the dis­ ability movement employed shared expectations and rules to control internal competition and implement a successful strategy developed around the civil rights model to energize publ ic opinion and pass the ADA . This group cohesion in the disa bility movement was rein forced by the development of shared signs, symbols and disability c u l ture. People within the movement were able to draw on their subjective experiences

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a nd demonstrate that disabi lity i s a shared, universal experience, to construct disa bi l ity as a social problem deserving of attention and re­ sources (Zola 1 9 89). All these strategies combined to produce and re­ inforce a vigorous disability movement.

American values and the political economy of disability The preponderance of disabil ity research in the United States has used the i ndividual, families or groups as the unit of analysis. Symbolic interac­ tionism began as a social psychology well suited to these types of a naly­ sis. However, there is a n eed to consider disabil ity from a societal and structura l perspective as wel l . There is analysis at this level using social construction and political economic perspectives to u n de rstan d societal definitions of disability, the organ ization of a response to disability and the disability marketplace (Al brecht 1 992; A l brecht and Bury 200 1 ) . Gordon and Rosenblum argue that sociologists have fai led to cultivate t he social constructionist model of disabil i ty, and continue 'to frame disability along "traditional" or "individua l " lines, that is by focusing on l i m i tations, medicalization, diagnoses, individual adj ustment' (200 1 : 1 6 ) . They base their observation o n a review o f 5 1 0 a rticles loc ated i n Sociological A bstracts, where they found that ' a fairly small proportion' ( 200 1 : 1 5 ), 17 per cent of the articles surveyed, addressed the social construction of disability. First, this study used only Sociological Ab­ stracts as its data source; secondly, 1 7 per cent of 5 1 0 articles ( 8 7) is not a triv ial number; and third, this review overlooks a number of important books. Gordon's and Rosenblum's sweeping i ndictment makes a l egitim­ ate case, but loses its impact by overstating their argument and overlook­ ing the force of importa nt work in the field. Two key books in the early 1 990s, for example, directly address the social construction of disabi lity. Oliver makes the socia l and cultural production of disability the central a rgument of The Politics of Disablement ( 1 990). Albrecht's book, The Disability Business: Rehabilitation in America ( 1 992 ), is devoted to a n a nalysis of the social construction of disa bil ity as a social p roblem and the development of a rehabilitation industry as an i nstitutional response. While not the dominant themes in d isabi lity research, work i nformed by the social construction of disability, the political economy of disab i lity, and analysis of the disabi l ity marketplace contributes significantly to our understanding of disabil ity on the societal and structura l levels. The social construction of disabi l ity and political economic forms of institutions are contingent on the values, interests and contexts of the particular society being studied. Therefore, an understanding of disability

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i n the United States req uires that American values and ideologies be ta k e n into account, beca use they i nfl uence the ways in which d i sa b i l i t y i s so ­ cially constructed and the i n stitutiona l I pol itical economic respons e to a defined social problem is orga nized. In the United States, the key va l ue s in the culture - of rugged individual ism, capitalism a nd democracy - h av e remained rem arka bly consistent over centuries ( Di M a ggio et a l . 1 9 9 6 ) . By contrast, Europea n nations, while also espousi ng democ ratic val u es, ar e generally more benign to those in need, have more comprehensi ve a n d complete health a n d welfare systems, and manifest less extrem e di ffe r­ ences in i ncome di stri bution in society a n d in services ava ila ble to thos e i n need, such as the unemployed, poor, women, children and disabled peo pl e ( Ardig6 1 9 95; Evans 1 995; Ayanian et a l . 2000; Ha yward et a l . 2000 ) . In the United States, then, emphasis on rugged individualism, c a pital­ ism a nd the America n brand of democracy a ffect how disa bi lity is defi n ed and the shared institutional response. Disability is typically desc r i be d as an individua l problem with which the disabled person m ust dea l . W hi l e there are substantial government programmes for disabled people, th ey emphasize protection for those in politically and economica l ly v a l ua b le occupations like the mil itary, transportation workers an d g ove rn men t employees, and are often aimed at return to work ( Mudrick 1 99 7; Ye lin 1 997). Whether in the public or the private sector, reha bil itation good s a nd services a re commodities that can be bought and sold. Disa h i l i ty is the focus of a multi-bi l l ion dollar business comprised of diverse st a k e ­ holders in a capita listic marketplace, where helping disabled people and making money a re i mportant goals. The stakeholder groups i n du d e health care and medical professiona ls; hospitals, therapy businesse s a n d home care agencies; assisted care l iving facilities; the pharmaceu tic al , medical su p p l y and technology industries and insurance com pan ies; architects, law p ractices, banks and accounting firms special izing in disability; government and lobby groups; politicia ns; and last, the c on ­ sumer ( Albrecht and Bury 200 1 ) . In this environment, the consu me r 1 disabled person is the stakeholder with the least power. Such political economic analyses in the United States a re i mportan t, because the American model of managed care , delivery of tech nic al medicine, definitional processes, and socia l policies are heing expo rted around the world through multinational companies and governm e nt policies . As American capitalism and democracy dictated the defini ti on of, and response to, disability contingent on one's place in, and percei v ed val ue to, society in the United States, so these forces will operate i n th e international arena as health, h uman services and disabi l ity becom e global businesses. Such anal yses are instrumental in helping us u nd er­ stand how values, the political economy and the physical and social

American Pragmatism an d Disability Studies

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environ ment affe ct a soc iety 's treatment o f disa bled people and to know best how to i n terve ne.

American exce ptionalism and the future of disability studies As we have seen, American disability studies have been shaped by prag ­ matism; soc io l ogy, including quantitative, symbolic interactionist and politica l econo m i c analyses; and the particular context i n which the disci pline ha s gro wn in the United States. At the same time, American disability studie s have been characterized by a ge ne ra l lack of histori cal sensi bility and a disconcertin g insula rity. M uch-needed contri butions on the historical gr ou nd i ng of disability studies are finally appearing (Stiker 1 999 ; Bra d doc k and Parish 200 1 ; Long more and Umansky 200 1 ; Fleische r a nd Zam es 200 1 ), but there is ne e d for more schol arship l i ke this in the United States and other countries . Commenting fr om a British perspective, Col in Ba rnes ( 1 999) aptly notes disturbin g trends in discussing Limon's ( 1 998 ) recent book, Claiming Disab ility. Barnes argues that d i s a b i lit y scholars, exemplified by Linton, are fre quently re - i n ven t i n g the whee l ' because they do not have a deep his to rical anchoring in their discipl ines and do not read the work of others ca refully: 'It is clear, however, from the recent body of writing coming out of North America, that some of the emergent c rop of "disability scho lars " a re ignorant of, or choose to overlook, develop­ ments on this sid e of the Atlantic and, indeed, elsewhere' ( 1 999: 577 ) . These remarks are well taken , because it i s eas y for discip l i ne-based s c holars to have m yopic vision when they work i n a new, i n terdiscipl i n ­ a ry field. The re qui rement fo r disabi l ity studies to ex p lore the history of d i s abil i ty and t o b e open to perspecti ves and research across bord ers and d isc i p l i nes is i mperative, if it is to a cquire mat u r i ty as a n academic discipline and c red ibil ity in the activist worl d ( Ba rnes et al. 1 999; G lee­ son 1 9 99; Llewe l l yn and Hogan 2000; S. ]. Wi lliams 2001 ). In conclus ion, i t is an openness to, and respect for, others that will permit a shared un iverse o f discourse, d i scussions of disability definitions and representati ons, appreci ation of diverse intellectual positions, the experiences of o thers, the vision of disabi lity studies as a d i scipline, and how theo ry and research can bear upon practice (G. H. Williams 200 1 ). Disabilitv studies is a product of the inte llectual trad itions a n d the cultural set t i n gs where it is ev ol v i n g. It is most l i kely to mature as scholars, policy m a kers and acti v i sts listen to each other and engage in re s pectfu l discou rse a bout the fa u lt l ines, issues, theories and applications of the field to the rea l world. Let the rec ip roc a l dialogue begin. '

'

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Albrecht R E FERENCES

Abbon, Andrew 1 9 99: Department & Discipline: Chicag o Sociology at One Hundred. Chicago: University of Chicago Press. Albrecht, Gary L. 1 9 92: The Disability Business: R e habilitation irr A merica . New bury Park, CA: Sage. Albrecht, Gary L. and Bury, Michael 200 1 : The political economy of the disa b il­ ity marketplace. In Gary L. Al brecht, Katherine D. Seelman and M ic h ae l Bury (eds ) , Han db ook of D isa b ility Studies, Thousand Oaks, C A : S a e g , 5 85-608 . Albrecht, Gary L. and Verbrugge, Lois 2000: The globa l emergence of disa b ili ty. In Gary L. Albrecht, Ray Fitzpatrick and Susan C. Scrimshaw (cd s ), Th e Handbook of Social Studies in Health and Medicine, Thousand Oa ks , CA: Sage, 2 93-307. Albrecht, Gary L., Seelman, Katherine D . and Bury, Michael 200 1 : The fo r ma ­ tion of disa bility studies. In Gary L. Al brecht, Katherine D. Seel ma n a nd Michael Bury (eds), Handbook of D isa b ility Studies, Thousand Oa ks, CA : S age , 1 -8 . Altman, Barba ra M . 2 00 1 : Disa bility definitions, models, classification s�.:he rn es and applications. In Gary L. Albrecht, Katherine D . Seelman and M ichael (eds), Handbook of Disability Studies, Thousand Oaks, CA: Sage , 97- 1 22 . Altman, Barbara M . and Barnartt, Sharon N. ( eds) 2000: Expanding th e Scope of Socia l Science Research in Disability. Stamford, Cf: JAI Press. Ardig6, A. 1 995: Public attitudes and changes in hea lth care syste ms: a confron ­ tation and a puzzle. In 0. Borre and E. Scarbough (eds ) , The Scope of Gm,ern­ men t, Oxford: Oxford University Press, 388-406. Ayanian, John Z., Wei ssman, joel S., Schneider, Eric C., Ginsburg, jack A. and Zaslavsky, Alan M. 2000: Unmet health needs of uninsured adults i n the United States. Journal of the A merican Medical Association, 284, 206 1 -2069 Barnes, Colin 1 99 9 : Disability studies: new or not so new directions? Disabilit

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Barnes, Colin, Mercer, Geof a nd Shakespeare, Tom 1 99 9 : Exploring Disability: A Soc iological Introduction. Cam bri dge: Polity. Becker, Howard S., Geer, Blanche, Hughes, E verett and Strauss, A. 1 96 1 : Boys in White. Chicago: University of Chicago Press. Berger, P. and Luckmann, T. 1 966 : The Social Construction of Reality. Ga rden Cit)·, NY: Doubleday. Blendon, Robert J. and Benson, John M. 200 1 : Americans' views on health policy: a fifty-year historical perspective. Health Affairs. 20, 33-46 . Bloom, Samuel W. 2000: The institutionalization of medical sociology in the United States, 1 920-1980. In C. Bird, P. Conrad and A. M. Fremo nt (eds), Ha ndb o o k of M edica l Sociology, 5th edn, Uppe r Saddle River, Nj : Pre ntice­ Hall, 1 1-32.

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Blumer, Herbert 1 969: S)•mbolic Interactionism: Perspective and Method. Engle­ wood Cli ffs, NJ: Prentice-Hall. Braddock, David L. a nd Parish, Susan L. 200 1: An institutional history of disa bility. In Gary L. Albrecht, Katherine D. Seelman and M ichael Bury ( eds), Handbook of Disability Studies, Thousand Oaks, CA: Sage, 1 1 -68. Brown, Scott C. 200 1 : Methodological paradigms that shape disability research. ln Gary L. Albrecht, Katherine D. Seelman and Mike Bury (eds) , Handbook of Disability Studies, Thousand Oaks, CA: Sage Publications, 1 45-70. Chard, Jiri, Lilford, Richard and Gardiner, Derek 1 9 99: Looking beyond the next patient: sociology and modern health care. Lancet, 3 53, 486-9 8 . Charlton, James I. 1998: Nothing About Us Without Us: Disability, Oppression and Empowerment. Berkeley: University of California Press. Corker, Mairian and French, Sally {eds) 1 999: Disability Discourse. Buckingham: Open University Press. Devlieger, Patrick J. and Albrecht, Gary L. 2000: Your experience is not my e xperience: the concept and experience of disability on Chicago's near west s ide. Journal of Disability Policy Studies, 1 1 , 5 1 -60. Dewey, John 1 968-92: The Collected Works of John Dewey, 37 vols. Carbon­ dale: Southern Illinois University Press. DiMaggio, P., Evans, J. and Bryson, B. 1 996: Have Americans' social attitudes become more polarized ? American Sociological Review, 1 02, 690-75 5 . DuBois, W. E . B. 1 96 1 : The Souls o f Black Folk. Greenwich, CT: Fawcett. Evans, G. 1 995: Why is America different? Explaining cross-national varia­ tion in support for welfare distribution . Working Paper Series, Centre for Research into Elections and Social Trends, Oxford: Nuffield College, 36, 1 -2 8 .

Faris, Robert E . L. and Dunham, H . Warren 1939: Mental Disorders in Urban Areas. Chicago: University of Chicago Press. Fleischer, Doris Z. and Zames, Freida 2 0 0 I : The Disability Rights Movement: From Charity to Confrontation. Phi ladelphia: Temple University Press. Fujiura, Glenn T. and Rutkowski-Kmitta, Violet 200 1 : Counring disability. In Gary L . Albrecht, Katherine D. Seelman and Michael Bury (eds), Handbook of Disability Studies, Thousand Oaks, CA: Sage, 69-96 . Gleeson, Brendon 1 999: Geographies of Disability. London: Routledge. Goffman, Erving 1 959: The Presentation of the Self in Everyday Life. New York: Doubleday. Goffman, Erving 196 1 : Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. Chicago: Aldine. Gordon, Beth 0 . and Rosenblum, Karen E. 200 1 : Bringing disability into the sociological frame : a comparison of disability with race, sex, and sexual o rientation statuses. Disability and Society, 16, 5- 19. Greenhouse, Linda 200 1 : Justices accept two cases to clarify protection for d isabled. New York Times, 1 7 April, p. A 1 3 . Haack, Susan 1 993. Evidence and Inquiry: Towards Reconstruction in Episte­ mology. Oxford: Blackwel l .

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Haack, Susan 1 99 6 . P rag m a t i s m . In N. B u n n i n and E. P. Tsu i ·Jamcs (nl s ), The Black well Companion to Philosophy, Oxford : Blackwell, 64 J-6 I . Haywa rd, Mark D . , C ri m m i n s , Eileen M . , M i les, Ton i P. a n d Yang, Y u 2000: The significance of socioeconomic status in ex p l a i ni ng the racial gap in c h ronic health conditions. A merica n Sociological Review, 65, 9 1 0-3 0. James, Willia m 1 907: Pragmatism. C a m bri dge MA: H arv a rd U n i ve rsit y Press. lmrie, Rob 2000: D is a b l i ng environments and the geog r ap h y of access : pol ici es and p r a c t i c es . Disability and Society, 15, 5-24 . K loppenberg, James A. 1 998: Pragmatism. In R. W. Fox and J.T. K lopp enberg ( e d s ), A Companion to A merican Thought, O x fo rd : Blackwell, 5 3 7- 4 0 . linton, Simi 1 99 8 : Claiming Disability: Knowledge and Identity. New York: New York University Press. llewellyn, A. and Hoga n , K. 2000: The use and abuse o f m ode l s o f d i sa bi l i t y. ,

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longmore, Paul K . a n d Umansky, Lauri (eds) 200 1 : The

New Disabili ty History: American Perspectives. New York : New York U n i vers i ty Press . Mead, George H er be rt 1 964 ( 1 934 ): Selected Writings: George Herbert Mead,

ed. A. J. Reek, New York: Bobbs-Merrill. Michaud, Catherine M . , Murray, Christopher J . L. and Bloom , Barry R . 200 1 : Burden of disease-implications for future resea rch. Journal of the A merican Medical Association, 285, 5 35-9. Mudrick, Nancy R . 1 997: Employment discrimination laws for di s ability : uti l iza­ tion a n d outcomes. Annals of the American A cademy of Political and SoCial Science, 549, 53-70. O bersha l l , A. 1 972: The sociological st udy of the history of social resea rc h . In A. Obershall (ed. ), Th e Establishment ofEmpirical Sociology: Studies in Continu­ ity, Discontinuity, and Institutionalization, New York: Harper & Row, 2- 1 4. Oliver, Michael 1 9 9 0 : The Politics of Disablement. New York: St Mart i n 's Press . Peirce, C. S. 1 93 1 -58 Collected Papers, ed. C. H a r t s h orn e , P. Weiss and A. Bu rks. Cambridge, MA: H a rv ard University Press. Popper, K a rl R. 1 972: Ob;ective Knowledge: An Evolutionary Approach . Oxford: Clarendon Press.

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Simmel, Ge o rg 1 955: Conflict and the Web of Group Affiliations. Ne w York: Free Press. S t i k e r Henri-Jacques 1 9 9 9 : A His to ry of Disability. Ann Arbor, Ml: University of M ichigan Press. ,

Strauss, A. 1 9 9 3 : Continual Permutations of Action. New York: Aldine De G r u yte r. Stra u ss, A. and Corbin, ]. 1 990: B as ics of Qualitative M eth o d. Newbury Park, CA: S a g e . Strau ss, A. and Gla ser, B. 1 975: Chronic Illness and the Qualit)' of Life. St Louis, MO: Mosby.

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3 Disability Theory: Key Ideas, Issues and Thinkers

Carol Thomas

Introduction ' Disability' is a commonplace term. Its meaning, at one level, is beguilingly obvious - not being able to do something. In lay terms, refer r ing to people with impairments as d isabled signals that they belong to that group of people who cannot engage in 'normal ' activities beca use o f thei r ' a bnor­ mal ' bodily or intellectual 'deficit' or 'incapacity ' . Disability stu d ies ( DS ) activists and writers in Britain have overturned this everyday mean ing of d isability, together with derivatives of it adopted in many academic dis­ ciplines. In contrast, DS proponents assert that the i n ability of people wi th impairments to undertake social activities is a consequence of the e rection of bar r iers by the non-disabled majority. These social barriers - bo th physical and attitudinal - limit activity and constra i n the l ives of pe op le with impai rment. In short, these barriers socially exclude and work to oppress those with a socially ascri bed i mpai rment . The term 'disabi l i t y ' now refers to a type of social oppression, and disabl ism enters the voca bu­ lary alongside sexism, racism and other discriminatory practices. This simple exposition of the revolutionizing o f the meaning of dis­ ability gives no hint of the political and conceptual struggles invol ved in its achievement, or o f those yet to come in the advancement o f the social status of disabled people and the related theorizing of their social pos­ ition . In reality, the key ideas, issues and th i n kers informing this new understanding of disability did not, and will n ot, belong exclusive ly to the academy. This c ha p t er on key ideas, i ssues and thinkers - past and p resen t - recognizes that the gaining of new know ledge about d i sa b i l ity

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involves a dynamic interplay of, a s well a s conflict between, forces at a number o f levels: the i ndividual and the collective, the broader political, and the more narrowly academic and d i sciplinary. The first part of the chapter outlines the social model of disability - its distinguishing ideas and poli tical roots. This is followed by a review of more traditional ideas a bout disability that have been challenged by the d isabled people's movement and DS - perspectives found in biomedi­ cine, the rehabilitative sciences and services, and in rP.edical sociology. This includes a discussion of the influential International Classification of Impairments, Disabilities and Handicaps ( ICIDH) and its new incar­ nation as JCID H-2 . The next section of the chapter reviews ideas about disability within DS, outlining, in turn, materialist perspectives on the economic roots of disability, and feminist, postmodernist and poststructuralist views on the cultural generation of disability and the sign i ficance of impai rment . The concl usion s ummarizes the c hapter themes and considers the issues that lie a head for disability studies thinkers.

The social model of disability In Britain, the reformulating of disability as a form o f social oppression as opposed to a purely medical or wel fare concern bega n i n the 1 970s. Disa bled i n d ividuals and grou ps began to self-organize to resist, among other things, their relegation to residential institutions, their excl usion from the labour market and the opportunity to earn a living wage, and their enforced poverty. The h istory of these early activities and pre­ occupations of the disabled people's movement in Britain is now well documented ( O iiver 1 9 96c; Camp bell and Ol iver 1 9 96; Barton and Oliver 1 997) and archived ( http: I I www.leeds.ac . u k I disabi lity-studies I archi­ veuk / index. html ) . These politica l struggles in turn gave birth to radical new ideas about disability. One of the founding organizations in this m ovement, the Union of the Physically Impaired Aga inst Segregation (UPIAS ) bequeathed an important statement that played a key role in shifting the concept of disa bility i nto the realm of the social : [Disability i s l the d isadvantage o r restriction o f activity ca used b y a con­ tempora ry social organisation which takes no or little account of people who have [ . . . ) impairments and thus excludes them from the mainstream of social activi ties. ( UPIAS 1 976 , cited i n Oliver 1 9 96c: 22)

This socio-political recasting of disabil ity led the activist and scholar Mike Oliver to talk of 'the social model of d i sability '. The possi bil ity was

40

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Thomas

opened up th at the restrictions of activity and m y ri a d disa d v a ntages experienced b y people w ith impairments could be placed at the door of society, seen as a conse q u e nce of the soci al relations h i ps be tween the impaired and the non-impaired, rather than as caused by impairment per se. Ideas a bout disa bil ity in lay, medical , wel fa rist and other cultural discourses - that restrictions of activity and social disdava ntagc a re the inevita ble and tragic consequence of being i mpaired - cou ld be chal­ lenged and refuted. In fact, these traditiona l ideas could be understood to be a key part of the oppressive apparatus determining the l i ves of people with impa i rment (Fink el ste i n 1 9 80; Oliver 1 9 90; Barnes 1 99 1 ; Morris 1 9 9 1 ; Barton 1 996; Barton and Oliver 1 997) . The social modellist idea that d i sa bility is the outcome of soc i a l ar­ rangements that work to restrict the activities of people with impair­ ments throug h the erection of social barriers has become the leitmotif of disa bility stud ies in Britain. The social model of disability is the ra llyi ng cal l for disa b ility organizations identifying with the disa bled people 's movement . W hen disa bled i ndividuals encounter the social model , the effect is often revelatory and liberatory, enabling them, perhaps for th e first time, to recognize most of their difficulty as socially caused . Disab­ ling bar riers in all areas of soc ial life come into v iew - in h ou sing , education, em ployment, transport, cultural and leisure activities, hea lth and welfare s ervices, civil and political rights, and els e where. What are the key antagonistic ideas that social modellists have been attempting to combat in the academy and a mong those in the me d ical and rehabilitative professions who have seen d i s ab i l ity as their territory of expertise?

Ideas about disability

to

be challenged

Biomedicine and rehabilitation

Biomedicine h a s as its foc u s individual deviations of body and mind from socially recognized norms. Impairment per se is of central concern - its detection, avo idance, elimination, treatment and classification - though chronic and d egenerative diseases remain hard n uts to crack . M uch biomedical hope and expectation a re currently i nvested in a fast-moving genetic science which appears to its practitioners to o ffer a brave new world of disease eradication and radical new treatments for the restor­ ation of norma l functioning. In this 'medical model' perspective, disabil­ ity continues to be equated with the impairment itsel f - 'the disability' is the impairment. The emergence of the social model of disability has had

D isabilit)' Theory

41

l ittle o r no impact on constructions o f disabil ity i n the heartlands of Western scientific medicine. I n the domain of rehabilitative science and services, the biomedical perspective on disability continues to have a weighty presence in training and practice, although the focus i s on a different set of issues: the adj ustment and adaptation of disa bled individuals to a life 'as near normal' as possi ble. The same is true of social care or welfare services, although new entrants to professions such as social work in Britai n are l ikely to have been introduced to social modellist thought in their training ( Oiiver and Sapey 1 999) . The social disadvantages associ ated with impairment are certainly recognized, and some thera pists may attribute many of these to discrimination and inequality structured into the wider social environment. Nevertheless, at the core of this re habil i tative world-view is a strong adherence to the idea that i m pai rment inevitably leads to soci al di fficulties and exclusions, and that most of the latter can be causally a ttributed to impairment. This combination of ideas - that i mpairment causes limitations in activity, but so too do restrictions built into the wider social environment - has drawn many in the rehabilitative services towards the International Classification of Impairments, Disabilities and Handicaps ( I CIDH) . The influential and authoritative ideas embodied in the ICIDH require some attention. ­

The ICIDH The ICIDH was de v eloped for the World Health Organization by Philip Wood, E l izabeth Bradley and Mike Bury in the 1 970s. Published i n 1 9 80 ( Wood 1 980), the ICIDH represented an important attempt to move away from a biomedical view of disability. Bury has expressed this as follows: These were very exciting days for the three of us. As we saw it, the [WHO] was moving away from a narrow medical model of health and disease one primarily concerned with body systems and aetiologies to one which recognised the consequences of health- related phenomena . We were par­ ticularly concerned to a rgue for a clearer recognition of social disadvantage - the focus of handicap codes in the classification. Our aim was to bring such disadvantages to the fore. ( Bury 2000: 1 0 73 )

-

-

Handicap was defined i n the ICIDH schema as ' a disadvantage for a given individual, resulting from an impairment or a disabil ity, that limits or prevents the fulfillment o f a role that is normal (depending on the age, sex, social and cultural factors) for that individual' ( cited in O l iver

42

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1 996a: 40- 1 ). The schema's definition of d isabi l ity rcflcncJ the te r m's literal and lay meaning of 'lack of abi lity': 'a disab i l ity is a ny restri ction or lack (resulting from impairment) of abi lity to perform an activity in the manner or within the range considered norma l for a h u m a n bei n g' (ibid . ) . Thus disa bility ( restricted activity) was not eq uated w i t h i mpairment, but wa s seen as caused by it in large measure. Bury a rgues that the schema al lowed the social d isadvantages (handicaps ) experienced by disabled people to come into view; there was roo m for the poss i b i l ity that some restrictions of activity could be seen to be caused, or i nflu­ enced, by social factors ( Bury 1 997, 2000 ) . These ideas were used in a signi ficant seam of social policy and sociological research on disa bil ity in the 1 9 80s and 1 990s (reviewed in Bury 1 9 97, 2000 ) . However, despite this move in the direction of social consequences and determination, most social modellists have opposed the ICIDH on the grounds that it retai ns a medical model causal link between impairment and disabi lity such that the former determines the latter ( Oiiver 1 996c ) , and beca use the term 'handi c ap' (as well as being offensive because of its ' beggi ng' associations: cap-in-hand ) j ust does not do the job of re-centring the problems of disabi l ity in social arra ngements and practices . The WHO 's ICIDH schema has recently been revised i n the form of ICIDH-2 (Pfei ffer 1 99 8, 2000; Bickenbach et a l . 1 9 99; Bury 2000 ) . The term 'disability' has been replaced with 'disablement', with a foc us on limits to activities, and ' hand icap' is superseded by considerations of ' partici pation'; impairment remains as before - loss or a bnormal ity of psychological, physiologica l or a n atom ical struct ure or function . Do these changes in ter minology represent a shi ft in thi nk i ng in the di rect ion of social modellist ideas ? The authors of I CIDH-2 have certain l y ac­ knowledged the voices of disabled peo ple's organizat ions in Brita i n a nd internationa lly, and have wanted to gi ve a n upbeat spin to 'disa blement' . However, the many voices of those with a professi onal interest in the schema have also been attended to. The end result is a schema that differs from the original ICIDH in its use of language and in details, but not in its three-tier 'impairment-disability-h andicap' structure, although the old causal links from level one to level three are not so clearly in evidence: The ICIDH-2 em bo di e s what is now termed t he ' biopsychosocial' mode l , a synthesis of the medical and soci a l ap proa ches to disablement. Each d i ­ mension o f disablement is conceptua lized a s an interaction between intrin­ sic fea t ure s of the individual and tha t pe rs o n s social and physit.:a l environment. ( Bi cke n b a ch et al. 1 9 99: 1 1 83 ) '

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43

Within DS, opinions d iffer on whether /C/DH-2 has anything to offer disa bled people ( Pfeiffer 2000; Hurst 2000 ) . The outcome of the present period of field-testing ICJDH-2 will be of interest to al l . Medical sociology

The JCIDH was the definitional approach to disabil ity favoured by medical sociologists i n Britain . As an architect of the JC/DH schema, the medical sociologist Mike Bury has defended its use in the field known a s 'the sociology of chronic illness and disability' ( Bury 1 997). Bury has been one of the few sociologists to publ icly engage with social modellist ideas, although he finds little of value in them (see also the debate in Barnes and Mercer 1 996 ). In his view ( Bury 2000: 1 074 ) , the key prob­ lem with the social model of disa bility is its 'oversocialised' cha racter as witnessed in O liver's ( 1 996a, 1 996c) denial of any causal link between impairment and restricted activity (disability ) . For Bury, chronic illnesses such as stroke, arthritis and multiple sclerosis undeniably cause restricted activity. Advocates of the social model have c reated what has frequently seemed to me to be a confusing and confused ' radical' alternative to disablement: by turns Marxist, constructionist and deeply individua listic. I do not believe that the 'social m ode l has really engaged with the real issues facing the vast majority of disabled people, and, despite its rhetoric and undoubted attractions for some, it has not produced a cogent approach which can serve the real practical needs of disa bled people, or indeed the research community. ( Bury 2000: 1 075 ) '

I have discussed the difference in positions adopted by Bury and Oliver at length elsewhere (Thomas 1 999). Writing from a social modellist stance, I can see the logic in Bury's argument a bout oversocialization i n cases where the social model i s presented in a rather crude form. M y own a rgument can be briefly summarized as fol lows. If the social model posi tion were that all restrictions of activity experienced by people with i mpairment are caused by social barriers (and this is how it sometimes appears), then this would i ndeed be an oversoci a lized stance. But this is not the claim made in the UPIAS reformulation of disabi lity cited a bove . The UPIAS statement asserts that disability comes into being when aspects of contempora ry social structure and practice operate to disad­ vantage and exclude people with impairments through a restriction of their activity. Disabi lity is not equated with restricted activity per se, as it is in the ICID H schema . The potential for i m pairment to limit activities is not denied , but such restrictions do not constitute disability; I have

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used the term i m p a i r m ent e ffects' to distinguish these k i nds of l i m its on activity (Thomas 1 99 9 ) . The important point here is that med i c a l s oc i ­ ologists, . social policy writers � nd other s ?c i al scientists have gro s s l y underestimated, a n d freque ntly Ignored, socially engende red restri ct io ns disadvantages and exclusions - th at is, d i sa b i lity. lmpa irrncn r e ffe ct s a r� focused u po n at the expense of what rea l ly trou bles most peop l e w h o l i v e with i mpairment - disa bi l ity. R estrict i o ns o f activity a r e freq ue n tl y a t­ tributed solely to i mpai r m ent effects when they a re act u a l l y the re s u l t of disa b l i sm (or a co m b i nati o n of the t w o ) . To put i t in a way th a t m ak es use of the lClDH's own te r mi no l ogy, a sociology of handicap is wo efull v underdeveloped . A large body of soc i olog i c al resea rch on ' h a n dic a p' simply has not come into bei ng ( see Blaxter 1 976 for an early e xa m pl e of what could have been built on ) . There is a weig h ty literature in the sociology of chron ic i l l n es s an d disa b i l it y re garding the pheno menology of the expe r i ence of li vi ng w ith chronic ill nesses and other impa i r m ents ( Anderson and B u r y 1 9 8 8 · Conrad 1 9 90; Bury 1 99 1 , 1 99 7; R adley 1 99 3 , 1 994; Kel ly a nd F ie l d 1 9 96 ) . In the interpretivist tradition, attention has been foc u s e d on h ow 'sufferers' give meani ng to, and cope with, their changed id e n ti t y an d sense of purpose in the wake of a c h ro n ic illness diagnos i s or m aj or i n j u ry. Key concepts in this field a re biographical disruptio n , il l n ess narrati ve, coping, illness m anagement and negotiated ord e r s. W hil e having the m erit of highl ighting so m e of the impo rtant existen ti al an d ontological di m ensio n s of experiences that had previously bee n v ie w e d solely th roug h biomedical lenses, this research has thrown l i t t l e ligh t on the m ate ri al and wider social dimensi ons of being or beco m i n g i mpa ire d. Gareth Williams ( 1 996: 2 09- 1 0), who has written in both the me d ical sociol o gy and OS ca m p s , puts i t wel l : the work o f many sociologists starts off b y viewing the experien ce of chronic illness and disable ment in its context of social and econ om ic circum stances, but gets side-tracked into increasingly solipsistic ex pl or­ ations of identity and self.

In m y vie w (a v i ew not shared by m an y in DS) t h i s literature in me dical s oc iol ogy is of i n terest and value, but it is not a s oc i o l og y of d i sa b i l i t y. I t does no t begin to address the i s sues of pressi n g concern to m any disa bl ed

people: independent living, poverty, e mplo y ment, e d uca t ion , com m un i­ cation, transportation, accessing built enviro nm ents and civil r ig h t s . By dismi ssin g the so c ial model of d isa bility as oversoc ial ized , Bu ry a n d ot hers actually side-step the necessity to engage with the ide a th at d is ­ ability i s a form of soc i a l oppression, something that they a re ha pp y to

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contemplate in other sets of socia l relationships associated with gender, 'race', sexuality and class. Another significant literature in sociology that a ppears to have some­ thing important to say about disability is 'the sociology of the body', a growing preoccupa tion in the 1 980s and beyond, signa lling the consider­ able impact of postmodernist and poststructuralist ideas on a wide range of disciplines in the academy. As we shall see in the next section, some writers within disabi l ity studies have also drawn upon these theoretical perspectives, but as far as the wider literature on the sociology of the body is concerned, very little has been said a bout impairment or d i sability. The

sociology of the body

The ' missing' impaired and disa bled body in the sociology of the body is, in part, a reflection of the fact that 'rea l ' bodies - material and organic ­ of any type are a bsent. The socia l constructionist character of much of the theorizing ensures that it is the cultural representations and discursive positionings of bodies ( that is, of 'norm a l ' bodies) that is the focus of interest. The ' fixed ', material , body has bee n viewed as a complex of i deas manufactured by essential ist, though powerfu l , cultura l discourses incl uding the biological sciences and medicine (Turner 1 9 92 ) . However, this constructionist sociology of the body has recently become the subject of critique, and there are some calls for the real material body to be brought back in. Of particular note is the work of Simon Wil l iams and Gillian Bendelow in their book The Lived B ody ( 1 9 9 8 ) . These authors reject the 'shifting sands' social construction ist project of reducing the body to a series of representations, while at the same time retaining what they see as some of the valuable i nsights that a constructionist perspective offers. They argue that sociologists, as em bodied subjects themselves, need to move from the theorization 'of ' the body (in which the body is obj ectified) to an embodied sociology: theorising not so much about bodies ( in a largely disembodied male way) but from bodies a s lived en t i t ies including those of its practitioners as well as its subjects. Social institutions and discursive practices cannot be under­ stood apart from the real lived experiences and actions of embodied human beings across t i me and s p ace. Social theory must therefore be rooted in the p roblems of human embodiment. (Williams and Bendelow 1 998: 209) ,

Whether such a move would bring the sociology of the body i nto a serious engagement with impai rment and disabil ity is uncertain, and perhaps unl ikely. It is significant that i n their extended argu ment a bout

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the need to return to ' rea l ', 'lived' , bodies, Wi l liams a nd 1\cndcl ow ( 1 998 ) barely mention disability, eit her i n the traditional med ica l soci ologic al sense of restricted activity or in the social mod cllist sense o f s oci al oppression. Thus it appears that ideas in the field of the sociol ogy of the body have yet to o ffer anything of significance o n th e su bjec t of disabil ity.

Debates within disability studies In asserting that disability is socially ca used and a form of social op pr es­ sion, the social model of disability unleashes a series of ne w sociological questions, not least: How can this socia l phenome n on be theorized ? What is its social history ? In the newly emergi ng British disability studies of the 1 9 8 0s, some of the leading thinkers sought answers to these questions in Marxist or materia list pa radigms ( Finkel­ stein 1 980; Oliver 1 9 90; Barnes 1 99 1 ) . With the gather i ng of interest in DS, t hese influential ideas have been challenged by a growing n u m ber of disability stud ies writers employing other theoretical systems, pa rti cu­ larly feminism (s), postmodernism and poststructuralism ( Priestley 1 998; Thomas 1 9 99 ) . There is now lively debate about the nature o f bo th disability and impairment in DS, and some of the key issues sha l l be explored. Materialist perspectives

on

disability

Building on the early in sights of Vie Finkelstein ( 1 9 8 0 ) , Mike Oliver ( 1 990) examined the relationship between disability and capita l i st rela­ tions of production . The issue is as follows: if disabilit y is the rest ri ction of activity imposed on people with impairment by contempora ry soci al structures and practices, how did this come i nto bei ng? In Ol iver 's vie w the answer l ies in the emergence of industrial capita l ism. In brief, w hen the wage-labour relation became increasingly bound up with large- sca le industry from the late eighteenth century in Britain, p eople with i mp air­ ment began to be systematically excluded from di rect i n volvemen t in economic activity. Long hours of labour in factory en vironments req uire d a standardized dexterity, speed and intensity of work. Ma ny people wit h impairments were una ble to sell their labour power under such con di ­ tions; they were increasingly socially posi tioned as dependants, exc l u de d in the economy of generalized comm odity production. D u r ing the nine­ teenth century, large-scale industry increasingly usu rped sma l l -scale

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manufacture and petty commod i ty production, the dependency of impaired people was co n so l idat e d , and the pol icy s o l ut i on to the 'social problem' the y posed was found in institutionalization a n d m edicalization ( for a more detailed account of the a rg u m e n t, see Oliver 1 990; Thomas 1 999 ) . The exclusions and d e p e ndenc y that disa bled peop le experien­ ced in the twent i eth century - b a rri e r s i n e mpl o ym e n t , education, welfa re services, h ousi ng , transport, c u ltura l and leisure domains, whether i n i nst i tut io n a l o r community settings - could b e traced ba ck t o thi s earl ier econ om i c r e le gat io n of the impaired to the c ategory of the ' non­ productive' and the d epe ndant . O liver summarizes his position as follows: Hence the economy, through both the operation of the labour market and the social organisation of work, plays a key role in producing the category disabili ty and in determining societal responses to disabled people. Further, the oppression that disabled people face is rooted in the economic and social structures of capitalism which themselves produce racism, sexism, homophobia, ageism and disablism. (Oliver 1 996b: 3 3 )

The Australian-based scholar Brendan Gleeson ( 1 9 97, 1 9 9 9 ) h a s con­ s id e r a b ly d e ve l o ped this materialist perspective on the historical emer­

genc e of disa b ility, m a rs h a l ling evidence for the argument that dis a bility has its or i gi ns in t he transition from feudal to c apita l i st socia l relations of production . These kinds of ana lyses make t h e decisive point that disabil­ ity is not a transhistorical, ubiquitous, soci a l phenomenon , but is bound up with soci al rela t i o n s hi p s at s pecific historica l j unctures. This enables us to move beyond s i m pli s ti c ideas about d isability being a type of always occurri ng ' restricted activi ty'; d i s a bil i ty is located sp a ti a l ly, temporally and economi c al l y. In my v i ew, this material ist perspective on the economic roots of disability, where di s a b i li ty i s viewed in a social-relational sense (a phe­ nomenon of social relationships between groups of people in socio­ structural circumstances ) , is of grea t interest and va l u e . However, materialist wri te rs i n d is a b i lit y studies need to be a ble to update t h e i r analyses to take theoretical account of contemporary developments i n capitalist economic s ystems . The c hal lenge is to examine whether eco ­ nomic arrangements characteristic of a global c a p i ta lis m , or hype rc a p i t­ a l is m ( Sch o lte 2000) - with its m u l ti - and t ra n s-national corporations, supra-territorial money and finance systems, and burgeo n i ng informa­ tion a nd communications industries - is changing, pe rh a p s t r ansform ing , the social position of people with i m pa i rments, for better or w o r se. Do people with i m pa i rments now occ u p y an entirely different rel a tio ns hi p to

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the wage-labour economy beca use ' new technol ogi es' no longe r auto­ matica lly excl ude thei r partici pation ? Perhaps it depends on the type of impairment. What new d ivisions, exclu sions a nd dependenc ies are opened up? The analysis of such questions has begun in DS ( Roulstone 1 99 8 ; Sapey 2000; Beresford and Holden 2000 ) , but a great deal remains to be exami ned. How has this m aterialist, or Marxian, rendering of the hasic social modellist proposition that disabi lity is the socially produced restrictions on activity experienced by people with impairments bee n c h a l lenged within British D S ?

The foregrounding of 'difference' and culture Disa bility studies in Britain has been enriched by the growing p resence of perspectives and issues that have challenged the materialist prioriti za tion of the economic roots of d isa bil ity a nd the contemporary o peration of structural barriers i n the wider social environmen t . Questions have been posed a bout the adequacy of this agenda in deal ing with matters of difference among disabled people, especially those associated w ith gender, 'race', sexuality or type of impairment (e.g., Corbett 1 994; Warmsley 1 997; Morris 1 996; Crow 1 996; Appleby 1 9 94; Vc rnon 1 996; Corker 1 9 9 8 ) . Taking dea fness as an example, perhaps peo ple with particular forms of impairment experience forms of d isabl ism t hat are as much about l a nguage, communication a nd cultural systems as they are about the disa bling barriers traditionally identified in social modellist thought ( Cocker 1 99 8 ) ? Or perhaps disabled women occu py di fferent kinds of social locations to disabled men, because more than one system of oppression is in operation, so that they have priorities not addressed i n conventional social modellist thinking (Morris 1 9 9 1 , 1 99 3 , 1 996 ) . The writing that has emerged through an engagement with such questions has drawn upon fem inist, postmodernist, poststructural ist and other social constructionist theoretical ideas. The work of feminists in disability studies is of particular note, but this should not be mistaken for a single set of i deas. Wider femi nist thinking has fragmented into several fcmin­ isms, each linked to other theoretical traditions, some material ist and some social constructi onist �Thomas 1 9 99, 200 1 , 2002 ). The soc i a l model of disability itsel f has come into the firing line: is i t too limited, exclusive, inadequate, i n need of adaptation, transformation or replacement? Vigorous debate is ongoing. Here, two issues of signifi­ cance in the exchange of ideas will be discussed: culture and disability, and the need to theorize impairment.

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Culture and disability

such as Tom Shakespeare ( 1 997) and Mairian Cocker ( 1 998, 1 99 9 ) have argued that much social m o d e l l ist think­ ing seriously d o wn plays the i mportance of cultural processes and dis­ courses in the generation of disa b i l ity and d i sabl ism: Writers

C o rker and French

A determinist view, [materia lism] does not give much explanatory space or autonomy to the realm of culture and meaning. (Shakespeare 1 997: 224)

Because human agency is lost in the materialism of the socia l model and because discourse is seen to be a side-effect of social structure, neither can be the focus for social change. (Corker 1 998: 3 9 )

In the minds o f these w r i te rs , materialism mi s takenl y sees culture as either of l ittle significance or as s eco nda ry to, and determined by, the economic - as part of an ideological su perstruc ture . I n contrast, consider­ a b le emphasis is placed on the d isability-engendering role played by cu ltural ideas, always negative , about p e o ple with impairment: these i deas position those w i t h culturally ascri bed bodily and behavioural di fferences, ' a bo min a t ion s ' , in locations of powerlessness and depend­ ency, p rofo undl y u n d e r m i n ing their sense of self-worth and identity. Foucauldi a n notions of the sel f-disciplining of the bo d y in the shadow of powerful medical and welfa rist d i scourses on impa i rment a re seen to offer ways of under sta ndi n g the subordi nation experienced by disabled people ( Price and S h i l d rick 1 99 8 ) . Postmodernist and p oststr uc t ura l i s t perspectives o n the cu ltural co n ­ struction of our s oc i a l worlds involve the rejection of wh at a re seen to be rationa l ist, modernist ideas. The materialist view of the roots of d isa bil ity being located in ca pita l ist s o c ia l relations of production is d i s miss ed as m istakenly modernist. Em phasis is p l a c e d on the need to tra n scen d the dualistic thinking attri buted to modernism, wherein the body is s ep a r­ ated from the mind, the biological from the social, and the cultural from the economic. Rather, a l l social phe n o m e n a , including disability and i mpairment, should be understood to be woven thr o ugh , and out of, c ult u ral ideas and disc u rsive practices: there is no 'reality' independent of i deas concerning it. Materia listically oriented writers have, in turn, critiqued the p o s i t i o n of t h o se who a ttach such o v e rrid i n g signi ficance to the cultural, a l though it is acknow ledged that more atte n t i o n to cultural and i d e o l ogi c a l forces in the shaping of di s ah l ism is require d ( Barnes 1 996; Oliver 1 9 96c ). Ba rnes,

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Thomas

for exam ple, objects to what he suggests is a reduction of expl anations for social p h e n ome n a to 'thought processes' ( Ba rnes 1 996: 49 ) . Some i n disability studies see the possibil ity of drawing on the strengths of both the materialist and the social constructionist a rguments: ' ! This form of oppression] needs eo be considered as a product of both cul tura l va l ues and m aterial relations of power (such as political econ omy, p a t r i a rch y and imperialism) ' ( Priestley 1 99 8 : 87) . We await with interest the further elaboration of arguments on these issues. Impairment

One issue over which materialist, soc i al constructionist and feminist perspectives within DS have clashed is the relevance and n a t u re of impairment (Thomas 1 999, 200 1 , 2002 ) . Social modell ists like Oliver ( 1 996c ) and Barnes ( 1 9 9 8 ) have argued that the personal experience of living with impairment is n ot the concern of disa bility studies, and that intellectual and political energies should be concentrated on un de r st a nd­ ing and tackling the wider social causes of disability. They see a focus on impairment as posing a danger to the gains made by the social model 's conceptual severing of i m p air men t from disability - it gives succour to the ' impairment causes disabil ity' pos i ti o n s in the medica l model of disability, medical sociology and other disciplines. The argument for the nec es sit y o f p a yi ng attention to impairmen t has been m ade on a number of grounds. Fi rst, feminist wri ters l i k e Je nny Morris ( 1 996) and Liz Crow ( 1 996) have argued that the social mode llist relegation of impai rment to the domain of 'the private and personal ' i s a reflection in DS of a patriarcha l se pa ra ti on of 'the personal' from 'the public', the priva te from the social (Thomas 200 1 ) . Jenny Morris sees this as problematic: there was a concern amongst some disabled women tha t the way our experience was being politici sed d i d n ' t leave much room for a c knowledg­ ing our experience of our bodies; that too often there wasn't room for talking about the experience of impairment, that a lot of us feel pressurised into j ust focusing on social barriers. ( Morris 1 996 : 1 3 )

A plea was bei ng made for impa irment experiences to be acknowledged, discussed and shared in disability politics and DS; bringing to l i fe the 'personal is political' feminist slogan. It was seen as a nti-holistic and unacceptable to construct impairment in terms of the 'private'. Further, it was suggested that impairment did restr ict activities in important ways ( Morris 1 996; Crow 1 996; French 1 9 93; Wendell 1 996 ) , a position seen

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as particularly problematic by those socia l model lists who equate d isabil­ ity with 'restricted activity' ( see the discussion in Thomas 1 9 9 9 ) . Clearly, on this point, there is some overlap with the medical socio l ogica l argu­ ments of Mike Bury discussed earlier, about a causa l link between i llness and disabi lity. A second variant in this l ine of argument is the contention of social constructioni st feminists that the distinction between disability (as socia l ) a n d impairment (as biological, of the body ) is a product of modernist, 'essentia l ist', dualistic thinking (Shildrick and Price 1 99 6 ; Price and Shildrick 1 99 8 ; Corker 1 99 8 ; Corker and French 1 999 ) . In this view, both impa irment and disability are discursively constructed social cat­ egories, the forme r having no relationship to a supposedly underlying biological rea l ity, itself another construct. The po stmodernist feminist writers Janet Price and Margrit Shildrick express this as fol lows: The postmodernist claim that t here is no essential b i ol og ic a ll y given corpus upon which meaning is i n sc r i b ed , and no u nmed i a ted access to a body prior to discourse, re m a i n s contentious. It is not that the mate rial i t y of the body is in doubt, but that materiality is a process negotiated throu gh the d i scu r s i v e exercise of what F o uca u lt ( 1 980) c a ll s power I knowledge. To both the b i om e d i c al pro fession with its fantasy of descriptive objectivity, and to the [disabled peo p le s movement! with its investment in the notion that im pa i r ment can be separated off from disability, the claim is anath­ ema. While both may subscri be to the view that health care pra c tice s a re both normative and normal isi ng, there is little recognition that those practices are also constitutive of the body. As J u d ith Butler p uts it . . 'there is no reference to a pure body which is not at the same time a further fo r m at i o n o f that body' ( 1 993: 1 0). What that means is that the physi c al impairments o f the body, and the socially constructed disability are equally constructs held in place b y reg u l a to ry practices that produce and govern all b odi e s ( Price and Shildrick 199 8: 234) '

.

.

So, for Price and Shildrick, powerful discourses in m edicine and other regulatory domains work to represent, con struct and position some people as ' i m paired' or 'disabled' and others as 'norma l ' . In this view, there is nothing inherent, or ' pre-social', i n individuals' bodily states that can sustain the idea of 'real' bodily differences - 'impaired' and 'disabled' people are entirely discursi ve ly constructed. A third argument i n a similar vein is found i n the work of DS writers Bill Hughes and Kevin P ate rs on ( 1 997; Hughes 2000 ) : there i s a po werfu l convergence betw ee n biomedicine and th e social model of disability with respect to the body. Both treat it as a pre social ine rt p hys ica l object, as discrete, palpable and separate fr om the se lf. The definitional -

,

,

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Carol Thomas

separation of impairment and disa bility which is n o w a sem a n t i c �: o n v � n tion for the soc ial model fol lows the traditional, Ca rtesia n , western meta ­ na rrative of human constitution . ( Hughes and Patcrson 1 9 97: .l 2 9 )

The apparent social modellist relegation of impairment to t h e realm o f the biological is t h u s seen as an e x a mple o f untenable dual istic t h i nking; impairment is naturalized when it should be thought of as social. How­ ever, unlike postmodernist thinkers, Hughes and Paterson do n ot w a nt to deny the ' reality' of impa i rment and the materiality of bod ies. Their solution lies with a future sociology of i mpairment, one tha t d raws on phenomenological perspectives in particular, emphasizing the import­ a nce of the lived experience of impairment. I n response to the earlier feminist calls for impairment to he taken seriously, and for i t to become a concern within DS, M i ke Oliver ( 1 996c) has acknowledged that a sociology of impairment may well constitute a field of study, but has also stuck to his guns, that impai rment is n ot the business of DS. Not all materialistically oriented DS writers have agreed with this stance. Pa ul Abberley ( 1 9 87, 1 996), for example, has long a rgued aga inst the social modellist naturalization of impairment through its relegation to the realm of the biological (leaving it, unchallenged, in the hands of the biomedics ). However, unlike socia l constructionist thinkers, Abberley has drawn a ttention to the ' real' social produc tion of impai r ment - the materia l creation of impairment in capital ist a nd other socie ties. Impairment is produced through a myriad of social production and other processes: a ccidents and injury in work-places; accidents in transporta­ tion; medical mistakes, drug therapies and surgical advances (extending the life expectancy of many people with impairment); wars, street and domestic violence, and so fort h Thus impairment is as much social as it is biological . This is an important argument, suggesting that DS should encompass the study of both disability and impairment. The arguments a bout the nature and relevance of impai rment are ongoing. One thing is certa in: impairment wil l not go away in DS debates; it is an issue that requires further theoretica l a nd politic al a ttention. This is a particularly pressing m atter given the rising star of the genetic sciences a n d associated technologies, whose advances have profound implications for disabled people. .

Conclusion This chapter has reviewed a range of competing ideas about disability. 'Traditional' ways of thinking about disa b ility - in biomedicine, rehabi li-

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tative science a n d services, and in medical sociology - have been out­ l i ned, as h a s the chal lenge to these ideas forged through the political struggle of disa bled people agai nst their day-to-day su bordination and oppression. The emergence of DS as an academic discipline in Britain saw the conceptual elaboration of the social model of disa bility. In the early stages, the flesh that was added to the bones of this model had a materi­ a list cast: the roots of the socially engendered restriction of activity experienced by people with impairment were sought in the social rela­ tions of the capital ist system of commodity production. Contemporary exclusions were located in the operation of socio-structural 'social bar­ riers'. More recently, a nd as DS has gathered strength, other theoretical perspectives, much influenced by social constructionist thought, have also made their presence felt in DS. The social model itself has, in turn, been criticized and vigorously defended. Ensui ng debates a bout disabi lity have demanded an engagement with the significance of culture in the creation of disability, and with the matter of impairment itself. The intersection of disability with other forms of oppression - gender, 'race', sexual orientation (and, to a lesser extent, class and age ) - has been placed on the theoretical agenda by feminists and others. The need to recognize and deal conceptually with 'difference' among disa bled people has also been a growing theme in DS. This has demanded both that the difference in the lived experiences of categories of disabled people (men, women, stra ight, gay, with learning difficu l ty and I or phys­ ical impairment and I or mental ' i l lness', and so on) are better understood and, in a postmodernist sense, that these categories are themselves decon­ structed because they a re essentialist and discursively generated . Debates within DS, and between D S writers and those in other traditions - especially medical soc iologists - are engines for the formulation of a n ever more sophisticated sociol ogy of d i sabi l i ty. In my view, the deepening of a materialist theorization of disability, but one that encompasses questions of cu lture, difference a nd impairment, is requ i red (Thomas 1 9 99, 200 1 , 2002 ) . I have a lso argued for the recognition and theorization of what I have called the psycho-emotional dimensions of disabi lity - those dis­ ablist practices that undermine the psychological and emotional wel l-being of people with i mpai rment - something l a rgel y unacknowledged as a form of disablism in social modellist thought (Thomas 1 99 9 ) . Other writers will set d ifferent priorities for DS, but w hatever our agendas, a considerable amount of research and theorizing lies a head . Thought needs to be further applied to many disabil ity issues, not least the i mpact of glo ba lization, disability in developing societies, informati on technology: communica­ tion systems, genetic science and med ical practices, i ndependent living,

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welfare system change, the a c h i evement of ful l civil rights, m ed i a r epre ­ sentations - t h e list go e s on. Disability studies is a y o u ng discipline, with an encourag i ng rate of expansion. However, it shou ld n o t be fo rgotte n that its radical edge and its relevance to disa bled peo p l e i n our communities h i nges on its a bility to maintain its c lose alli a n ce and involvement with t h e ongo i n g politica l struggles of disabled people. REFERENCES P. 1 987: The concept of oppression and the development of a soc ial t heo ry of disability. Disability, Handicap and Socie�y. 2, 5-20. Abberley, P. 1 996: Work, utopia and impa irment. In L. Ba rton (cd. ) , D ist�b ility and Society: Emerging Issues and lnsights. London: L ong m a n , 6 1 -79. Anderson, R. and Bury, M . (eds) 1 98 8 : Living with Chronic Illness: Tb e Experi­ ence of Pa tie n ts and thei r Families. London : Unwin H yman. Apple by, Y. 1 994: O u t in the margins. Disability and Society, 9 ( 1 ) , 1 9-3 2 . Abberley,

Barnes, C. 1 99 1 : Disabled People in Britain and Discrimination. London : H urst & Co.

of people in western soci ety. In L. Barton (ed.), Disa bility and Society: Emerging Issues a nd Insights. London: Longman, 43-6 1 . Barnes, C . 1 99 8 : Review o f The R ejected Body b y Susan Wendel l . Disability and Society, 13 ( 1 ) : 1 45-6 . Barnes, C. 1 99 6 : Theories of disa bility and the origins of the o p pression disa bled

Ba rnes, C. and Mercer, G. (eds ) 1 996: Exploring the Divide: Illness and Disabil­ ity. Leeds: Disabil ity Press .

Barton, L. (ed.) 1 9 96: D isa b il i ty and London: Longma n .

Society:

Emerging Issues and ln sig hts.

Barton, L . and O l iver, M. ( e d s ) 1 9 97: Disability Studies: Past, Prese nt a n d Futu re. Leeds: Disa bility Press .

Beresford, P. and Holden, C.

2000: We have choices: globalisation a n d welfare 1 5 (7), 973-89 .

user movements. Disability and Society,

J. E . , Chatterji, S . , Badley, E . M . a n d Ustun , T. B. 1 999: Mode ls of disa blement, universalism and the international cla ssification of i m p a i rme nts,

Bickenbach,

disabilities and ha ndicaps .

Social Science and Medicine, 48, 1 1 73-87.

Blaxter, M. 1 976 : The .�feanmg of Disability. London: Heinemann.

B ury, M . 1 99 1 : The sociology of chronic i l l ness: a review of resea rch and prospects. Sociology of Health and lllness, 1 3 (4), 1 67-82.

Bury, M . 1 9 97: Bury, M .

2000:

1 073-7. Butler, J . 1 9 93: Routledge.

Health and Illn ess

in a

Cha nging Society.

London: Routledge.

A comment on the ICIDH2 . Disa b ility

and Society, 1 5 ( 7),

Bodies that Matter: On the Discursive Limits

of 'Sex '.

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Disability Theory 55 Campbell, ] . and Oliver, M . 1 996: Disability Politics: Understanding o u r Past, Changing our Fu ture . London: Routledge. Conrad, P. 1990: Qualitative research on chronic illness: a commentary on method and conceptual development. Social Science and Medicine, 30 ( 1 1 ), 1 257-63 .

Corben, J . 1 994: A proud label: exploring t h e relationship between d isability politics and gay pride. Disability and Society, 9 ( 3 ), 343-5 7 . Corker, M . 1 99 8 : D eaf and Disabled, o r Deafness Disabled ? Buckingham: Open Universi ty Press. Corker, M. and French, S. (eds ) 1 999: Disability Discourse. Buckingham: Open University Press. Crow, L. 1 9 9 6 : Including all of our lives: renewing the social model of disability. In C. Barnes and G. Mercer (eds ), Exploring the Divide: Illness and D isability, Leeds: Disability Press, 5 5-73 . Finkelstein , V. 1 9 8 0 : Attitudes and Disabled Pe ople: Issues for Discussion. New York: World Rehabi l itation Fund. French, S. 1 9 9 3 : Disa bility, impairment or something i n between? In J. Swain, V. Finkelstein, S. French, and M . Oliver (eds), Disabling Barriers - Enabling Environments, London: Sage, 1 7-24 . G leeson, B. ]. 1 9 9 7 : Disability studies: a historical materialist view. Disability and Socie ty, 1 2 (2), 1 79-202. Gl e eson B. J. 1 999: Geographies of Disability London: Routledge. Hughes, B. 2000: Medicine and the aesthetic invalidation of disabled people. Disability and So cie ty, 1 5 (4), 555-6 8 . H ughes, B. a n d Paterson, K. 1 997: The social model o f disability and the disap­ pearing body: towards a sociology of impairment. Disability and Society, 1 2 ,

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( 3 ), 3 25- 40.

Hurst, R. 2000: To revise or not to revise? Disability and Societ)•, 1 5 (7), 1 08 3-7. Kelly, M. and Field, D. 1 996: Medical sociology, chronic i llness and the body. Soc1ology of Health and Illness, 1 8 ( 2), 24 1-57. Morris, J. 1 9 9 1 : Pride Against Prejudice: Transforming A ttitudes to D isability. London: Women's Press. Morris, J. 1 99 3 : Gender and disability. In ]. Swain, V. Finkelstein, S. French, and M. Oliver (eds ), Disabling Barriers - E nabling Environments, London: Sage, 85-92.

Morris, J. (ed. ) 1 996: Enco u n ters with Strangers: Feminism and Disability. London: Women's Press. Ol iver, M. 1 990: The Politics of Disablement. London: M acmillan. Oliver, M . 1 996a: Defining impai rment and disability: issues at stake. In C. Barnes and G. Mercer (eds), Exploring the Divide: lllness and Disability, Leeds: Disability P ress, 1 39-54. Oliver, M . 1 9 96 b : A sociology of disability or a disablist sociology? In L. Barton (ed.), Disability and Society: Emerging Issues and lnsights, London: Longman, 1 8- 42. Oliver, M. 1 996c: Understanding Disability. London : Macmi llan.

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Oliver, M. and Sapey, B. 1 9 99: So cia l Work With Dzsabled l'eople. 2nd e dn. Basingstoke: Macmillan. Pfei ffe r, D. 1 998: The /CIDH and t h e need for its re v isi on . Disa b1lity and So ciety, 1 3 (4 ), 503-2 3 . Pfeiffer, D. 2000: The devils a r e i n the details: the /C/DH2 a n d the dis ab il ity move m e n t . Disability and Society, 1 5 (7), 1 079-8 2. Price, J. and Sh i l d r ic k , M . 1 9 9 8 : Uncertain tho ugh ts on the dis / a b led bod y. I n M. Shild rick and J. Price (eds), Vital Signs: Feminist Reconflguratw ns of the B iological Body, Ed i nb urg h: Edinburgh University Press, 224 - 49 . P r i est le y, M. 1 99 8 : Constructions and c rea tio ns: idea lism, mater ialis m and d i s­ ability theory. Disability and Society, 1 3 ( 1 ) , 75-9 5 . Ra d l ey, A. (ed. ) 1 993 : Worlds of Illness: Biographical and Cultural Pe rspectives on Health and Disease. London: Routledge. Radley, A. (ed. ) 1 994: Mak ing Sense of Illn ess. London: Sage . Rou lstone, A. 1 998: Enabling Tech11ology: Disabled People, Work and New Techn o logy. B u ck i ngh a m : Open Uni versity Press. Sapey, B. 2000: Di sa blement in the i nformational age . Disability and Society, 1 5 ( 4 ), 6 1 9-36.

Sc h ol te , ]. A . 2000: grave.

Globalization:

A Crit ica l Introduction . Ba s ingstok c: Pa l ­

Shakes p e a re , T. 1 996: Disabi lity, id enti t y, difference. In C. Barnes a nd G. M e rce r ( e d s), Exploring the Divide: Illness and Disabilit)•, Leeds: D i sa bi li ty Press, 94- 1 1 3. Shakespea re, T. 1 997: Cultural representation of d isabled people: d ustbi ns of disavowa l ? In L. Barton and M. Oliver (eds), Disability Studies: Past, Present and Futu re , Leeds: Disabi lity Press, 2 1 7-36. Sh i l d ri c k , M . a nd Price, J. 1 996 : B re a k i ng rhe boundaries of the bro ken bodr. Body and Socie ty, 2 (4), 93-1 1 3 . Thomas, C . 1 9 99: Female Forms: Experiencing and Understandi ng D isabili ty. Buckingha m: Open Un ive r si ty Press. Thomas, C. 200 1 : Feminism and d i sa bi l i ty : the theoretical and political s ig n i fi ­ cance of the persona l and the experiential. In L. Barton (ed.), Disability, Politics and the St ruggle for Change. London : Da v i d Fulton Pu blication s 45-5 8 .

•

The 'Disa bled' Body. In M. Evans and E. Le e ( eds ), Rea l Bas i n gs tok e : Macmillan ( forthcoming) Turner, B. S . 1 992: Regulating Bodies: Essays in Medical So ciology. London: R o u t l e d ge . Vernon, A. 1 996: A s tr anger i n many c amps: the experience of disabled black and ethnic minority women. In J. Morris ( ed . ), Encounters with Stra ngers : Femi­ nism and Disability, London: Women's Press, 48-68. Warmsley, j. 1 997: I nc l udi ng people with learning difficulties: theory and prac­ tice. In L. Ba rt on and M . Oliver 1 eds), Disab ility Studies: Past, Present a11d Future, Leeds: Di s a b i l ity Press, 6 2-77. Thomas, C. 2002 : Bodies ,

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Wendell, S. 1 996: The Rejected Body: Feminist Philosophical R eflectio ns o n Disability. London: Rourledge. Williams, G. 1996: Representing disability: some questions of phenomenology and politics. In C. Barnes and G. Mercer (eds), Exploring the Divide: Illness and Disability, Leeds: Disability Press, 1 94 -2 1 2 . Williams, S. and Bendelow, G. 1 99 8 : The Lived Body: Sociological Themes, Embodied Issues. London : Routledge . Wood, P. 1980: International Classifications of Impairments, Disabilities and Handicaps. Geneva : World Health Organization.

4 Disability and the Body

Bill Hughes

Introduction The rel a t i onsh i p between disa b il i ty and the body - once settled a n d n on­ controversial - has become, since the 1 960s, a highly conteste d dom a in

. The long historical partnership between modernity and medic a l i za ti on produced a hegemonic conception of disability as an outco m e of b io­ physical or mental impairment. Disa bled peo ple were peo p k w ith broken bodies or fa ulty m i n ds . It is the fat e of b reakage - as m a tt e r o ur of place - to be swept up and disposed of. To the mode r n m in d, in particular, to appear to be ' broken' or •faulty' was to offend aga i n st th e sense of order, to repres ent a h i nt of c haos in a c o n te x t domi na ted b y cl a rity and perspective. As Alain Touraine ( 1 99 5 : 2 0 1 ) p ut i t, 'The triumph of rationa l i st m ode rn ity rejected or forgot a ny t h i n g th at se e m ed to re sist the tri umph of reason, or else confi ned it in repressive i n st i ­ tutions.' If the h i s to r y of modernity i s, as Toura i ne suggest s, one of forgetfulness, exclusi on and confinement, then su rely th � most ex e m p la ry particular i nstance of this history is the moder n expe n ence of disa b l ed people. The defin ition of disabil ity as a corporeal probl em has meant th at, for the most part, throughout modernity, disabled people ha ve com e u n der the jurisdiction, control and su rveillance of ( bio) medicine. This pro cess of locating disability within the disciplinary scope of medicine h a s in fl u­ enced profoundly the st a t e of knowledge a bout i t Disabil ity ha ;; b ee n u nd e rs to od as a sickn ess, and di s a bled people have been u n d e r st o od a s i n v a l i d s The medi cal ization or c orpo rea l i zatio n of disabi l i ty su gg e s ts, .

.

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59

therefore, that the l i fe o f a disabled person m ust b e understood i n terms of in c a pac i t y and confinement. Social p olicy has followed through with this discourse such that, in modernity, disabled people have been con­ fined, indeed i ncarcerated, socially exc luded, stripped of their social responsibilities and constituted a s the epitome of dependency. The appli­ cation of the label 'invalid' to disabled people has contributed to their ' invalidation'- that is, to thei r constitution as strangers (Hughes 1 999; 2000). This argu m e n t suggests that the p roduction of medical knowledge about disabled people has itsel f been disabling. However, a materialist critique of the medical model of disability has developed a pace since the 1 960s. The 'social model o f disabi lity' ( Oiiver 1 9 90; Finkelstein 1 980) deve loped as the intellectua l expression of the movement of disabled peopl e . lt embodi es the a rg u ment that disabil ity should be understood not as a corporeal deficit but i n terms of the ways in which social structure excl udes and oppresses disabled people. By separating physical or mental impairment from social processes of dis­ crim i nation, exclusion and oppression, the social model of disability was able to make the case that disability was a pu blic issue rather t h an a persona l trouble ( Ba rnes et al. 1 999 ) . In so doing , however, the social model instituted an analytical d i stinction between i m pairment and dis­ ability. I ronical ly, just a s sociology - through (the new) sociology of the body - was trying to deconstruct the dual ity of body and society (Wil­ liams and Bendelow 1 99 8 ) , disability studies - by consigning impairment to a pre-social domain - was constructing a new dualism. In the early 1 990s the soc io l ogy of the body and disability studies seemed to be ships passing in the n ight . The problem for the sociology of the body was that the a cc u sation s of disablism that were made aga inst it were w arranted (Hughes and Paterson 1 997) . The problem for disability studies was that it had cut itsel f off from the possi bility of developing a sociology of impairment (Hughes and Paterson 1 997) . I think that it is probably fai r t o say that disability studies has made m ore p rogress with its problem than the sociology of the body has made with its. Th is cha pter is divided into three sections, entitled 'Thesis', 'Antithesis' and ' Synthesis' . This is not an attempt to claim a particular philosophical heritage for what follows. It is simply a heuristic device that I have used to try to map out the relationship, in modernity, between the body and disa b i lity. Mapping sociology into the relationship between the body and disabil ity has been a relatively simple task, because I have accepted the 'orthodox' soc i ology of the body account which argues that the body in sociology has been - until recentl y - an 'absent prese nce' (Shilling 1 993, Williams and Bendelow 1 99 8 ) . M edicine has dominated the i nterpretation of disa bi l it y for m ost of modernity. Consequently,

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disa bil ity has been construed in corporeal terms as a n outcom e of phys­ ical or mental impai rment, and sociology has been - with respect to the interpretation of disability - an 'a bsent presence' in which the 'presence ' - as the first section will demon strate - is often d i fficult to detect. I n the post-World War Il period, medical sociology bega n to offer expla na ti ons of disa b i lity. Yet, despite the partial advances offered by la bel l i n g t he ory and Goffman 's ( 1 96 8 ) account of stigma, as a body of know ledge, medical sociology tended to con firm the physicia ns' view that di sa b i lity was a sickness ( Ba rnes and Mercer 1 9 96 ). It was the antithesi s of the conception of disa bility as a corporeal essence, provided by disa bi l ity studies, as it eme rged from the ' socia l model of disabil ity', t h at ma de sociology a trul y valuable frame of reference for reflections on d i sa bil ity. However, the socia l model push ed the study of i mpairment to the fri nges of disab i lity studies , and it is onl y recently that it and the sociology o f the body have combined to try to map out the case for a ' sociol ogy of impairment' ( H ughes and Pate rson 1 997) .

Thesis

The ontological essence of disability is a physical or mental impairm ent or a biological 'deficit' or 'flaw' that limits what disabled people can do. The dominant framework for understanding disa bility in the modern period has been the medical m odel (Oiiver 1 9 90 ) . From the e arly nine­ teenth century onwards, biomedicine l egitimated the view that biophys­ ical 'abnormality' or 'maladapta tion' leads to, or is the cause of, s ocial 'abnormality' or 'maladaptation'. In other words, to be defined a s a 'flawed' body is simultaneously to be defined as incapable of adeq uate social participation . The corpo rea lization of disability meant, in prac ti cal terms, the segregation of those so label led . The logic of the med ical model runs from diagnosis to social response. In causal terms, th ere seem to be three linked elements in the chain: impairment leads to disability, which in turn leads to confinement or 'institutionaliz ati on ' . The social response to the ' flawed' body - particularly in the ninete e nth century - was anthropoemic . This concept refers to the expulsion or ex ile of alien persons . The Victorian penchant for excl udi ng people fro m social participation on the ground of what today migh t be called 'di ffere nce ' was summed up by Fouca ult's ( 1 96 9 ) notion of the 'great confine me nt' . The segregation associated with confinement was not only equiv alen t to a custodial sentence - often for life - but was also a sentence of 'soc ia l death', which was - in itself a sort of tacit legitimation for the denia l of

Disability and

the Body 6 1

human rights and the appl ication of oppressive practices o f care ( Barnes 1 990). These institutiona l spaces of exclusion, into which d isabled people were cast, were, after all, 'civi lized' by medical jurisdictio n . The very authority that h a d objectified disabled people by reducing them to their impairments now had the opportunity to define disabled people's needs and, in many cases, act in loco parentis. However, the transformation of impairment into a social p roblem is not simply a story of medical intervention . Political economy was a major protagonist ( F ink elstein 1 9 80: Oliver 1 990) . The capitalist system that emerged in full-blooded form out of the rapid economic changes of the early to mid nineteenth century made wage slavery - for the vast majority of people - the sole option for survival. Disabled people did not have this option. They were excluded from industrial p rod uctio n on the grounds that their l a bour power was impaired . The labour market, which prized above a l l the skil l of corpo rea l repetition that was matched to a pace set by machinery and later the production line, was closed to 'cripples'. 'Mechanised production required a uniform work-force, who could pe r form similar tasks and work was not organised to cater for the range of intellectual and bodi ly differences between people' ( Mark s 1 999: 8 0 ) . Further, the pool of disabled people was refreshed continu­ ously as other pe op le became - to use a contemporary military euphem­ ism - 'collateral damage' of the ca pitalist mode of production . Not regarded as 'fit' to join the rese rve army of labour, in a society where labour powe r determined one's place, disabled people became materially constituted as a waste product. At best, they were defined as a class of unfortunates who had better be thankful that the goodness of the com­ munity or the largesse of the infant 'therapeutic state' (O'Neil 1 9 86) was on hand to save them from destitution and starvation. The medical model of disability is, and has been, strongly associated with the potentially reactionary theme that ' biology is destiny' , and is embedded in popular cu lture by the 'naturalization' of t he view that natural aptitudes determine l i fe chances . Nurture is causally impotent. In the soc ial world, it is natural e ndow m ent that is the most efficacious variable. At its worst, in the nineteenth century, the medicalization of di sability dovetailed with what Fouca u lt called ' the racisms of the state' ( 1 979: 5 4 ) , with the Darwinist and euge n icist perspectives which prom­ ised to cleanse the social body of impurity, imperfection, degene racy and defectiveness. Even in the twe n tiet h centu ry, not only i n Fascist Germany, but a lso in post-World War 11 Social Democra tic Sweden, the view that disability represen ts a conta minant within and a threat to the physical and mora l integrity of the popul ation was manifest in state-sponsored programmes of sterilization ( M u l ler-Hill 1 994 ) . In the United States,

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Margaret Sanger, a major proponent of bi rth control, dec l a red i n 1 9 19: 'More chi ldren from the fit, less from the unfit - that is the chief issue of birth control ' ( quoted in Lupton 1 994: 1 3 9} . The concept of ' fitn ess' was used, in such contexts, as a criterion for making 'humanity' - cefi ned in terms of aesthetic ideals of embodiment - into a relative term. W. odernity is riddled with such eugenic concept ions of 'social hygie ne ' . They are based on the view that disabled people are e ither ' u nfit' to be in society or to reproduce. The eugenic gaze proposes collective sol ut i ons to the contaminant that disabled bodies represent, but does not p ropose col­ lectivist explanations. It i s imprisoned in the repertoi re of socio - hiology and social Darwinism, and treats disability as an error of na:: u re that should be righted. When wedded to a rigid concept of heredity, biological reductionism may - at its worst - translate into a pol itics of genocide. At the level of culture, impairment, or bodily 'abnor mality' , is inter­ preted and represented, ubiquitously, as a personal tragedy (Oiiver 1 9 90). Consequently, the non-disabled gaze is structured by pity and fear, and such negative emotional responses tend to have an · elective affinity' with social responses that are characterized by a pol icy mix of alms and segregation or, to put it another way, charitable paternalism and exclusion. The domina nce of such ablist practices inform institu­ tional, social, cultural and even emotional responses to disabled people . At work in this process is a c rude visual materialism in which the truth of a disabled person is read off from physical appearance. Such judgements are self-fulfil ling prophecies because they take place in a cultural context in which values regard ing physica l appearance are not only inse parable from moral order, but a lso inform a system of aesthetic strati fication ( Synnott 1 9 9 3 ) , the foot of which is over-represented by the most battered and bruised proleta rians. The impact of early capitalism on labouring bodies is a matter of record: 'Women made unfit for c hi ldbear­ ing, children deformed, men enfeebled, li mbs crushed, whole generations wrecked, afflicted with disease and infirmity, purely to fill the purses of the bourgeoisie' (Engels 1 98 7: 1 84 ) . And, the author might have added, it was these very 'unfortunates' who provided the bourgeoisie with the opportunity to do charita ble works, which might i nclude the funding of places of asylum for mendicants or people damaged in the process of production. Impaired bodies might have been surplus to economi.c val ue, but they had emotional value for the dominant class and can be credited, therefore, with at least one usefu l function. In the twentieth century, the medical model of disabi lity developed beyond the strategy of confinement. Reha bilitation became the watch­ word and objective of a practical, ' norma l izing' strategy in which bio­ medical authorities took the view that the impaired body could benefit

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from rationalization and reform ( Seymour 1 9 9 8 ) . The goal of rehabili­ tation was to fix or improve the ' performance' of broken bodies and thus make them 'fit', once again, to carry out their social roles and responsi­ bilities: The rehabilitation role obligates its occupants to resume as many of their previous roles as possible, or develop new capabilities. It is also expected that the person with the i mpairment will take their cue from rehabil itation professionals and fully co-operate in attempts to develop ways to retrieve some element of normality. ( Barnes, et al. 1 999: 4 1 -2)

It was in the guise of post-Pa rsonian functional ism that sociology first entered - with any serious i ntent - the debate about disability. Sociology accommodated itself to the medical agenda. Nomenclature was testi­ mony; the study of disability was located within medical sociology. Disability was a sickness, a particular form of social deviance based on individual physical or mental 'incapacity'. In adopting an uncritical approach to the medical distinction between 'the normal and the patho­ logical' ( Canguilhem 1 99 1 ), medical sociology simply reiterated the thesi s that impairment was inva l idity, and thereby rein forced the m od­ ernist agenda by which the medicalization of disability had ensured the social and cultural invalidation of disabled people.

Antithesis Disability is not a medical or personal problem but a s et of physical and social barriers that constrain, regulate and discrim iltale against people with impairments.

For disabled people the l egacy of modernity was one of invalidation . This originated i n the processes that exc luded 'impaired labour power' from the work-force and in medical systems of classification in w hich disability came to mean a 'faulty' or abnormal body. A disa bled person was a victim of the cruel whim of nature or circumstance and became the kind of person that her body al lowed her to be. The barriers to citizenship, to living a ful l and active l i fe, were - tragically and u n fortunately - physical and internal . The ontological essence of disabi lity was impairment. For example, with respect to people with mobility impairments, the medical model suggests that 'the i r immobil ity is their own fault or the conse· quence of a deviant corpo reality which requires medical ca re, or, fai ling that, the application of charita ble works' ( lmrie 2000: 1 6 5 2 ) .

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The antithesis of this perspective began to evolve i n the 'counter-culture ' of the late 1 960s. In this h istorical moment of conven t i o n - brea k i ng reflex­ ivity, a great many taken-for-granted ideas were put to t he test. Sexual m ores, gender re lations, civil rights for people of colour, the scope and operation of state power, relations between t h e genera tions were j ust some of the issues that were transformed , rapidly, fro m matte rs of c o n s e ns u s to sources of conflict and division. This was t h e breed ing ground for new social movements and struggles for citizenship a n d emanc i pation fought out in the name of a va riety o f excluded gro up s . lt was the c radle of i de n t it y politics (Nicholson and Seidman 1 995 ) , the inspi ration for ra dical and liberal sociology's championing of the underdog which claimeu that dis­ abled people were stigmatized, and that their 'deviance' was a m p l i fied by negative social reactions a nd pejorative labels ( see, e.g., Goffman 1 96 8 and Lemert 1 972) . 1t was a lso the historical locus for the rise of the lnuependent L ivi ng Movement (ILM) ( Barnes et al. 1 99 9 ) . These developments were li nked, and provided a dy n a m ic in which the discourses of dependency, charity and medical ization that had defined disability from the Industrial Revol ution onwards came under challenge. However, what gave this c hall en ge its cutting edge was n ot so much the general climate of emancipatory discourse, which, in fact, was largely absorbed into consumer culture by the late 1 970s, but rather the fact that the c h al l e n g e came, primarily, from disabled people themselves. In the 1 970s, the Union of the Physical l y Impaired Against Segrega tion ( UPJAS) advocated organized struggle against disa bility disc rimina tion on the gr o u n ds that disabil ity was a social problem rather than the outcome of a 'natural' ( f)law. In what might be descri bed as its 'manifesto', entitled The Fundamental Principles of Disability, UPIAS redefined disabi lity as 'the disadvantage or restriction of activity caused by a contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from pa rticipation in the mainstream of social activities' ( 1 9 76: 1 4 ) . This was a radical departure from t h e tradition t h a t p u t natural 'a bnormal ities' and the science of pathology at the aetiological core of disability. Impairment was cut l o ose from disability. The biological and the social were separated into d isti nct domains, and disability became a concept that was allocated to the latter. The ontological essence of disability was transformed from a physical or mental deficit into a matter of e xclusion and discrimination. To be a disabled person was to be oppressed . 'Disability' was transformed in its implications - in the USA - into a claim for civil rights (Driedger 1 98 9 ), and descr i be d, in Great Britain, as a form of collective political agency that had all the hallmarks of a ' new social movement' ( Oii ver 1 996b). The distinction bet\veen

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disability and impairment was the theoretical move that grounded the 'social model of disability' (Oiiver 1 990 ) . It split disabil ity d i scourse into a professional, non-disabled frame of reference that was biological and an activist praxis that was pol itical and social. The study of disability had undergone a transformation that might be described as a 'paradigm shift' (Kuhn 1 970 ) . The 'social model of disability' transformed disabi­ lity from an objective medical fact derived from the universal body of knowledge known as clinical pathology into a n outcome of relations of pm..·er. How these relations of power a re expressed in socia l patterns which exclude disabled people was the question posed by the social mode l . With the body removed from t h e definition o f disabil ity, i t became possi ble to rew rite d isability a s a socio-pol itical d iscourse and thus to outline the ra nge, form and types of discrimi nation that made the world a hosti le place for disabled people (Barnes 1 9 9 1 ) . It also became possi ble to express the experience of disabled people, in contemporary Western society, in terms of the 'barriers' that block the paths to social, cultural and political participation (Swain et al. 1 99 3 ) . These accounts of disabil­ ity lead to its characterization as a form of (social ) oppression (Ol iver 1 9 90; Barnes 1 996 ) : The defining feature o f disability theory has been its focus o n the social exclusion and oppression of disabled people. The barriers are embedded in pol i ci e s and practices based on the individualistic, medicalized approach to disability. Consequently the removal of such obstacles involves far more than gaining control over material resources and the range and quality of services. It requires a fundamental reappraisal of the meaning a nd hence medicalization of disa bility a nd recognition that the multiple deprivations experienced by people with accredited impairments are the outcome of hostile physical and social environments: in other words, the way society is organised. ( Barncs et al. 1 999: 1 6 8 )

The social model of disabil ity, the disabil ity movement and disabil ity studies a re a l l manifestations of the fact that, in the last twenty years disability has been transform ed, and that the dominance of the biomed­ ica l conception of disability has been contested by a political discourse. Decarcerated d i sabled people have refused to accept the view that they are victi ms of defective bodi es or that they need care, cure or charity. Passivity and disability are no longe r synonymous. Disabil ity politics i s n o strange r t o direct action, a n d s logans such as 'Rights not charity' represent criticisms of traditional views of disabled people. They also express demand for cu ltural a n d political cha nge, as opposed to the usual diet of 'improvements' i n medical services ( Paterson and H ughes 2000 ) .

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Impairment is social and disability embodied. The claim t hat to complement the 'social model of disa bi lity' a ' sociology of impairment' might be necessary has to be understood in the context of the e mergence of what Turner ( 1 996: 1) has called the 'soma tic society'. This is a society 'within which major political and personal pro b l e m s are both problematised within the body and expressed through it'. Th is term suggests that, in the contemporary world, the body has come to be recognized as the key domain in which struggles over power and control are c ontested. 'Bio-politics' has come to dominate contem porary pol itics to the extent that we have witnessed a 'somatic turn'. O nce social scientists became uncomforta ble with the distinction between nature and cu lture, the idea of the body as a pre-social obj ect became very d i fficult to susta i n .

The impact of post-Cartesian philosophy - part i c u larly

i n its phenomenological and poststructura list guise s - was such th at sociolo­ gists felt compelled to interrogate the p lace of embodiment i n social life and a world disgruntled by ra tionality went i n search o f sensuali ty, pleas u re and desire. Meanwhile the bod y was making itsel f ever-present in socia l a n d p o l i t ical life, be it in t h e shape of a battered woman, a term inated foetus, a

victim of tortu re or televised war, a proud celebration of womanhood, disability, colo u r or homosexuality, an organ i n transit for tra n splanta t ion,

a human-machine stepping on the moon, a sample of DNA under the m icroscope, a man who was a woman or vice versa, a body tra nsformed by diet, exercise or the surgeon's k nife , a homeless person ca mped on the

streets of the worl d's ric hest nation, a mass grave, another world record smashed. ( Hancock et a l . 2000: 1 7 )

Yet, as sociology rushed headlong t o embrace a l l things somatic, disabil­ ity studies had banished the body from its debates. W h i lst sociology was responding to the 'deafening chorus to "bring the body back in" ' ( Wil­ liams and Bendelow 1 9 9 8 : 9), disability studies was consigning impair­ ment to the margins of i ts agenda (Hughes and Paterson 1 9 97 ) . The dualism that consigned impairment to biological explanation and dis­ abi lity to sociological explanation had been a better servant of disability politics than of disa bility theory. The sociology of the body was, in itself, a recognition of the coming of age of a post-Cartesian agenda ( Burkitt 1 999), which - following in the wake of feminist debates about the relationship between sex and gender - was reconfiguring sociological debates about time (Adam 1 995 ) , nature and the environment ( Spaa rgaren et al. 2000 )

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67

a nd the emotions (Will iams 2000) . These aspiring sociological agendas delved into the largely unexplored spaces in which nature and culture collided. These agendas were motivated philosophically by feminist, poststruc­ turalist and phenomenological ideas (Turner 1 996; Wi l liams and Bend­ elow 1 9 98 ) . Disability studies, on the other hand, had its roots in historical materialism, rather than a critique of the Cartesian subject, and was therefore, understandably, much more concerned with advan­ cing the cause of disabled people than with the cognitive contortions associated with bringing mind, body and society into an intellectually satisfying symbiosis. In addition, attention to corporeal i ty and reaction­ ary politics had been, for many disabled people throughout modernity, two sides of the same coin. Furthermore, as Shakespeare ( 1 992: 40) argued, 'the achievement of the disability movement has been to b reak the link between our bodies and our social situation and to focus on the real cause of disabil ity, i .e. discrim ination and prej udice'. However, the advantages of forgetting the body with all i ts negative associations needed to be balanced against Deborah Marks's ( 1 999: 1 1 5 ) claim that 'To leave out impai rmen t means that it becomes d i fficult to d istinguish disabil ity from other forms of oppression'. This important practical difficulty could be traced to a theoretical problem at the core of the social model. The social model - in the dualistic tra dition - defined impairment solely in biological terms and thus denied its socia l nature (Hughes and Paterson 1 997). If i m pairment was the opposite of disabi lity, and disability was socially constituted, then impairment must be biologically constituted. Impairment must, therefore, be ta ken to refer to that palpable and pathological fleshy object that constitutes the subject matter of medical science. If follows that impairment m ust be devoid of social meaning and separate from the self. As such, i mpairment could make claim to epistemological validity only as a form of biological dysfunction, and could be identified solely by the authority of the medical gaze. In other words , the Cartesian approach to impairment and disabil ity sponsored by the soci a l model com pelled it to adopt a concept of the body that was indistinguishable from the one p romoted by biomedicine. This was a curious, even i ronic, affinity. The political radica lism of disabi lity studies was underpinned by a theoretical conservatism that conceded impairment to medical hegemony. Thus the social mode l, conceived as the intractable opponent of all things associ­ ated with the medica l model of disability, came to share with it a common conception of the body a s a domain of corporeality untouched by culture. This body, devoid of history, affect, meaning and agency was 'typically assumed to be a fixed, materia l entity subject to the empirical

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rules of biological science, existing prior to the muta bil ity a n d flux of cultural cha nge and d iversity and characterised by uncha ngea ble inner necessities' ( Csordas 1 99 4 : 6 ) . The more tel ling contradiction is that within d i sability studies, despite the theorization of impairment in purely objectivist and pol itica l l y neu­ tral terms, there is a tradition in which d isabled people have d i scussed their impa i rments as i n tegral to their experience of d i sc r i m i nation ( Oli ve r et a l . 1 98 8 ; Morris 1 98 9 ) . It was feminists who, as proponents of the social model (Morris 1 98 9, 1 9 9 1 ; Crow 1 99 6 ) , developed ' i nsider critiques' which suggested that, i f the personal was po l i t i c a l and the experience of impairment was persona l , then it must be pol itical. This argument e x posed the dualistic approach to impairment and disability as theoretically problematic . Yet the norm of conflating impairment with ( personal ) experience persisted, partly beca use, at this stage in the devel­ opment of the politics of disablement, there was understanda ble reluc­ tance to accept the argument that disability might be person a l and that such a claim might also be political. If one claims that o p pre ssi on is embodied ( Paterson and Hughes 1 999) that is, lived and fel t by dis­ abled people in the course of their daily lives - then one has to collapse the distinction between private troubles and publ ic issues. O ne has to take the view that the analytical utility of this dualistic axiom wh ich ha s been accepted by both sociology and disa bility studies has had its day. Once the legacy of post-Cartesian ideas began to bite at the theoretical core of a d iscipline / movement (think of the experience of women's studies I feminism), either as deconstructionism or a s the phenomeno­ logical politicization of the experience of everyday l i fe, then its modernist d ualistic i nheritance rapidly became indigestible . One can see how thi s process worked with respect to disa bility studies. Recogniti on of the i mpaired body as a social issue began to be registered itself in a number of ways. Mike Oliver ( l 9 96a ) gave, al beit rel uctant and l imited, l egitimacy to the deconstruction of the impai rment-disability duality when he accepted the poss ib i lit y of a ' socia l model of i mpair­ ment'. Almost a decade before this, an influential figure in disabi lity studies, Paul Abberley ( 1 9 8 7: 1 4) had a rgued that for disa bled people 'the body is t he site of oppressi on, both in form and what is done with it'. Colin Barnes ( 1 996: 57) has recently developed a materialist account of cultural responses to impairment. He argues that the 'interaction be­ tween the material and cultural forces' that sustain the 'myth of the body perfect' should provide a starting point for ' future sociological accounts of disability and, indeed, other forms of societal oppression'. In other words, even w i thin the materialist tradition that was the original inspiration for both d i sability studies and the social model of disabil ity, -

Disabilit)'

and the

Body

69

there i s a growi ng interest i n developing some kind o f sociological agenda fo r impairment . Carol Thomas ( 1 99 9 : 1 4 3 ) , for example, has devel oped a feminist materialist 'non-reductionist ontology of the body' which highlights what she calls ' impairment effects'. The cultural, somatic and linguistic 'turns' th at have produced post­ structura lism a n d re-animated phenomenol ogical approaches have also been i nfluential in making links between impairment and oppression (see, e.g., Corker 1 999, Corker and French 1 999; Hughes and Paterson 1 997; H ughes 1 999, 2000; Paterson and Hughes 1 999; Shakespeare 1 994; Shildrick 1 997 ) . An i mportant testimony to both the growth of theoret­ ical eclecticism in disability studies and the development of an agenda around the social aspects of impa irment is the b readth of the theoretical and 'somatic' content of a recent a n d important 'disabil ity' Reader that appeare d in the USA in 1 997 ( Da vis 1 997) . The body disa ppeared from disa bi lity discourse because, as Tom Sha­ kespeare ( 1 992: 40) put it, 'to mention biology, to admit pain, to con­ front our impai rments has been to risk the oppressors seizing on evidence that disa bility is really a bout physica l l i mitation a fter all'. It appe ars that disabled people, through the mouthpiece of disability studies, are pre­ pared to take that risk . Such confidence is the outcome of struggle, of a develop ing praxis in which impai rment i s transformed by the agency of disabled people themselves into a matter of pride . As disabled people have begun to rescue their bodies from the aesthetic priorities and dis­ cri m inatory perceptions of the non-disabled gaze ( H ughes 1 999 ) , they have recognized that interpretation of impairment cannot be left exclu­ sively to the normalizing sciences of biomedicine . Indeed, the sociology o f impairment makes the case that 'the impaired body has a history and is as much a cultural phenomenon as it is a biological entity' ( Paterson and Hughes 1 999: 600 ) . From a Fouca uldia n position, the impaired body is inseparable from the power that is visited upon it. As a discursive construction, i mpairment is culturally comple x . It is a p rod uct of the intense disciplinary practices that produce i t . In her poststructuralist critique of the Disabi l ity Living Allowance ( D LA), Margrit Shildrick ( 1 9 9 7 : 53) argues that the questionnaire used to d e ter­ mine eligibility for the a l l owance is comprehensive, a monument to the intensity and voyeurism of state surve i llance in respect of disabled peo­ ple's physical and social lives. 'No area of bodily functioning escapes the requirement of total visibil ity, and fu rther the ever more detailed subdiv­ ision of bodily behaviour into a set of d i scontinuous functions speaks to a fetishistic fragmentation of the embodi ed person'. The governance of impai rment, as Shildrick's argument indicates, is administratively dense, but it is a lso mediated by complex p rocesses of

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cultural constitution i n which, increasingly, j udgements of a uthenticity and moral worth are based on aesthetic c riteria . Worth is reduced ro appearance, performance ( Russell 2000; Featherstone 1 9 9 2 ) and superfi­ cial concepts of competence. With the collapse of aesthetics into ethics, the ideal of physical beauty and perfection has becom e the not-so-new tyranny for a new millennium ( Glassner 1 992 ) . There is a struggle in contemporary culture between an agenda that celebrates physical differ­ ence and one that valorizes impossi bly rigid regimes of bod i l y mainten­ ance and consumer asceticism. The narrowing of norms about the ideal body creates an environment in which physical capital becomes a much more important indicator of cultural capita l . Impairment has been politi­ cized by aesthetic discrimination: Beautyism, and its attendant fascism, the prejud ice and discrimi nation in favour of the bea utiful and attractive ( however defined) a nd against rhe ugly and less attractive are virtu a l l y institutional ised in o u r society and a re the last major bastion of inequality . . The pursuit of beauty. . . . is widely regarded as an excellent investment with su bstantial psychic, SOl:ia l and economic returns and for these reasons it is increasing i n �a l ienee m Europe, North America and around the world. ( Synnott 1 9 93 : l OO) .

.

Disabled people a re right to be wary of the potential ossi fication of aesthetic discrim ination. Contemporary ideas which suggest that the body is very amenable to reconstruction and re-formation by way of regimes of maintenance and enhancement i mply that the ' body we have is the body we deserve ' . What might be called ' body fascism' a rises from the confusion of the ethical subject with the aesthetic ideal of em bodi­ ment, and when this confusion meets the i deology of the flex i ble body, then disabled people should expect and be ready to fight prej udice and discrimination. However, discrim ination and i mpairment meet in other less obvious ways: for example, through the ways in which non- impa ired carnality constitutes itself as the corporeal blueprint for ' being in the world'. The social world and the built environment are carnally constituted or, to put it another way, deeply i n formed by carnal norms (Paterson and Hughes 1 99 9 ) . The spaces and places that people carve out for themselves are not onl y products of bodies ( what existe ntialists call 'projects', com binations of schemes of the imagination and the physical and mental labour that make them possible). They are also designed with particular kinds of bodies in mind. For example, the world made by and for Homo erectus is alien to the wheelchai r user, and the visual culture of postmoderniry excludes visually impaired people . The contemporary carnal order is

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not only profoundly disabl ist, but also a stubborn material factor in the constitution of disa bilitr as a specific form of oppression. Disabled people do not recognize themselves in the way in which space and time are organized, precisely becau se they have played little or no part in the constitution of the carnal order of modernity. This is hardly surprising, since disa bled people's experience of modernity has been largely one of incarceration and segregation. Decarceration made disability access a political problem because i m paired bodies encountered the barriers erected by a world which was a reflection of, and dominated, by the tempora l, spatia l and mobility needs of non-impaired people (Paterson and Hughes 1 9 9 9 ; Imrie 2000 ) . A phenomenological sociology of im­ pai rment seeks to demonstrate that the carnal presuppositions that inform and structure the world of institutional a s well as inter-subjective relations, including embodied norms of communication, are experienced by disabled people as places of exclusion . Discrimination is built into the everyday world in such a way that impaired bodies 'dys-appear ' . This describes the process whereby the impaired body-as-subject - in the process o f everyday social encounters - is objectified, a nd thus experiences itself as an awkward presence ( Paterson and Hughes 1 99 9 ) . In other words, the body, 'normally' taken for granted by most people in most situations, becomes a palpable factor in social encounters only when attention i s drawn to it. Invariably, people with visi ble impairments, in the context of everyday social en­ counters, experience their bodies as an influential presence largely be­ cause their bodies a re treated as such by non-disabled social actors. The encounter is thereby transformed from an encounter between two per­ sons to one betwee n a person and an o bject. Dys-appearance therefore refers to the deh umanization of disabled people, as wel l as the immanent experience of alienation that i s a ssociated with it. Furthermore, the disability movement has been able to demonstrate clearly that forms of excl usion from physical and social space a re ubiqui­ tous ( lmrie and Kumar 1 9 9 8 ) , and that the movement and mobility of people with impairments is constrained. This is becau se the physical and social worlds are made, by and large, i n the image and likeness of non­ disabled bodies ( l m rie 2000) . Even where buildings and public spaces a re designed to meet the access needs of d isabled people, they are usually profoundly inappropriate with respect to 'concerns about aesthetics, privacy, socia bil ity and comfort' ( Ma rks 2000: 5 2 ) . The carnal hegem­ ony of non-disabled bodies is designed i nto the fabric of everyday living and the amenities that help to make of it a pleasurable experience . As some doors open to people with impairments, it is becoming appa rent that there a re multiple barriers on the other side. It is a bit like being

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invited to a parry and then discovering, on a rriva l , that one is not welcome . The more that disabled people ente r the spaces of modernity from which they have been excluded hitherto, the more they a re likely to recognize the ways in which disability discrimination is embodied in the c a rnal norms that constitute the 'objecti ve' status of the taken­ for-granted worl d . The greatest figure in modern a rchitecture, Le Corbusier, argued 'that a l l men have the same organism and the same functions . . . . The same needs' (quoted in Imrie 1 996: 8 1 ). Such a uni­ versal claim - typical of li beral modernity - cuts across bodily di fference and suggests a homogeneous aesthetic of the built envi ronment which will, by definition , exclude disabled people. Architectura l practice is informed by 'normalising discourses which serve to alienate impaired bodies and to prioritise what one m ight term the "mobile body " ' ( lmrie 2000: 1 64 1 ).

Conclusions It seems clear that the contemporary neo-liberal state has set its sights on an individual istic response to disa bil ity. However, the discourse of rights that grounds thi s response is not wholly indebted to the medica l model and the 'flawed' body school of disa bility. The neo-liberal perspective recognizes the validity of a nti-discrimination legislation , and therefore shifts the debate about disa bility from corporeal and cognitive impair­ ment to opportunities. Disability activists have every right not to be too impressed by this development, given that the gap between opportunities and reality is massive. Furthermore, a lthough 'trendy' doctrines of social inclusion have acquired some of the rhetoric of the social model of disability, there is no rea l evidence that the exclusion experienced by disabled people has been mitigated i n any fundamental way. As the sociology of impairment develops, one thing is becomi ng evident. As limited opportunities open up for disabled people, they reveal the extent to which non-impaired carnality is the 'constitutiona l ' force behind norms about space, movement, mobility and temporality. What is inter­ esting a bout all these domains is that, like the body, they occupy an a mbivalent territory that straddles the traditional distinction between nature a nd culture, and reveal new ways in which disability discrimin­ ation is embodied in contemporary socia l relations. However, i f modern­ ity ' begins' with a biologically reductionist view of disability and 'ends' with one in which the meaning of disabi l ity is contested at the level of politics, one is tempted by tempered optimism and even encouraged to invoke that rather tattered value cal led progress.

D isability and

the Body 73

However, where there are opportunities, there are threats. The very cautious optimism expressed in the last pa ragra ph gl o sses the fact that abroad in the contemporary world is a reactiona ry, disahl i st d iscourse w hich threatens to up s et d is a b l e d pe op l e's bumpy ride t ow a rds incl u sio n a n d e m a ncip a tion. One might c a l l this the d is c o u rse of bodily perfection. Wh i l s t it h as a long h i sto ry in Western culture (Stone 1 995; Synnott 1 9 93) and can claim the eugenic movement as one of its mo s t infamo u s ' t ri u mphs', it has been rei nv i go r a ted of late by two important develop ­ ments. The first deri ves from contemporary scientific work, i n particular the exponentia l growt h of the 'new genetics' and the 'geneticization' of explanations of human be h avio u r ( S h a k esp eare 1 995; Stein berg 1 997; Sp a ll o n e 1 9 9 8 ) . The second arises from popular culture: in particular, the pr o ce sse s that const i t u te the a e s theti c inval idation of disa b l ed people (Hughes 1 999; 2000 ) . Both arc connected to the aestheticization of everyday life (Welsch 1 9 96), a n d how this prod uces new forms of dis­ c r i mi n a ti on that are fo c u s ed on embodiment and appearance. One of the potential dangers of the 'somatic society' (Turner 1 99 6 ) is that 'cultural c a pital ' ( Bou rdieu 1 984) may come to be defined, inc reasi n g l y, in term s of p h y si c a l attributes. This m ight mean th a t dist i ncti o n , hiera rch y and the emotive j udgements that might acco m p an y an aest h etici z ed system of power relations could deepen the pre j u d i c e, exclusion and oppr e ssi on that disabled people have e x p e ri e nced throughout modernity. D i sa b i l i t y s t u di e s and t he di sabi l i ty movement, it c ould be argued, could use the sociology of im pa irmen t as a tool to me a sure and counter the nature and e xten t of these contemporary, cultural th rea ts . In this c h a p ter, I have a rgued that there a re three key ' m oments' in the development of the rel a tion s h i p between d i s a bi lity a n d the body. The fi rst corresponds to the medicalization of dis abili t y, and e m e rged from the historical collision of m odernit y, medicine and i mp a irment. From this confluence of forces, d i sa b i lity emerged as a social identity tha t was pred icated on the presence of physica l or menta l i mpairment - that is, on an 'obj ective fact' of embodiment. Di s a b i l ity became a pathology that could be de tected in an individual's c orpore a l and I or mental d i spo s ition. The second ' moment' constituted the antithesis of t he first. The po litical movement of disabled peo ple recast the concept of disabil i ty in te rms that d rew upon the dia lectic of em an c ipa t io n . The 'problem' of d isabi lit y was reformulated as a problem of social organization rathe r th a n co r porea l status, a prob l e m of pol i t i cs rather t h a n nature. The third 'moment' arises out of t h e erosion of the legi t i m acy of a w o rld conceived in dual i sti c terms. The post-Ca rtesian age is one of ' body politics', in which society is 'somatic' (Turner 1 99 6 ) , d i s abil i t y e m bodied, and im­ p a i rment social.

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O'Neil , J. 1 9 8 6 : The disciplinary society. British Jou rnal of So(iology, 37 ( 1 ) , 42-62.

Paterson, K . and Hughes, B. 1 99 9 : Disabi lity studies and phenomenology: t he carnal pol iti cs of everyday life . Disabiltty & Society, 1 4 ( 5 ), 5 9 7-6 1 0. Paterson, K. and Hughes, B. 2000: Di sa bl ed bodies. In P. H a nc oc k , B. H ughes, E. J a gge r, K. Pa te rso n , R. Russell, E . Tu lle-Winton and M. Ty l e r (eds), The Body, Culture and Society: An Introduction, Buckingham: Open University P r ess , 2 9- 44. Russell, R. 2000: Ethical bodies. In P. Hancock, B. H u ghes , E. Jagger, K. Paterson, R. Russell, E. Tu l l e - Winton, and M. Tyler (eds ), The Body, Culture and Society: An Introduction, Buckingham: Open University Press, 1 0 1 - 1 6 . Seymour, W. 1 9 98: Remaking the B ody : Rehabilitation a n d Cha nge. London: Routledge . Shakespeare, T. 1 992: A response to Liz Crow. Coalition, September, 40-2. Shakespeare, T. 1 994: Cu ltural representations of disa bled people: dustbins for disavowal . D isa bilt ty and Society, 9 ( 3 ), 28 3-30 1 . Sha kespeare, T. 1 99 5 : Back to the future ? New gene ti cs and dis a b le d people. Cntical Social Policy, 44 1 5, 22-35 .

S h i l dr i ck , M. 1 997: Leaky Bodies and Boundaries: Feminism, Postmodemism and (Bio) Ethics. London: R o u tl e dge . Shilling, C. 1 993: The Body and Social Theory. London: Sage. Spaargaren, G . , Mol, A. and Buttel, F. 2 000 : Environme11t and Global Modernity. London: Sage. Spallone, P. 1 998: The new biology of violence: new geneticisms for old. Body and Society, 4 (4), 47- 65. Steinberg, D. L. 1 99 7: Bodies i n Glass: Genetics, Eugenics a n d Embryo Ethics. Mancheste r: Manchester University Press. S tone, S. D. 1 9 95: The myth of bodily perfection. Disa bility and Society, LO (4), 4 1 3-24.

Swa in, ] . , Finkelstein, V., French, S . and Oliver, M . 1 99 3 : D isa b li ng Barriers ­

Enabling

Environments .

London: Sage.

Synnott, A. 1 993: The Body Social: Symbolism, Self and Society. London:

Routledge. Thomas, C. 1 999: Female Forms: Experiencing and Understanding Disab ility. Milton Keynes: Open University Press.

Touraine, A. 1 9 9 5 : Critique of Modernity. Oxford: Blac kwell. Turner, B.S. 1 996: The Body and Society, 2nd edn. London: Sage. UPIAS 1 9 7 6 : Fundamental Principles of Disability. London: Union of the Physic­ ally Impa i red Aga inst Segregation. Welsch, W. 1 9 96 : Aestheticization processes: ph e no me n a , distinctions and pro­ spects. Theory, Culture and Society, 13 ( 1 ) , 1 -24. Williams, S. J. 2 00 0 : Emotion and Social Theory. Lon d on : Sage. Wil liams, S. J. and Bendelow, G. 1 998: The Lived Body: Sociological Them es, Embodied Issues. London: Routledge.

5 Theorizing Divisions and Hierarchies : Towards a Commonality or Diversity ?

Ayesha Vernon and John Swain

Introduction Payne claims that t h e idea of ' "social divisions" is one of the most useful and powerful tools available' ( 2000a : 1) in understanding ourselves, society and why society operates as it does. Certainly the notion of social division has a long history in social theory, particularly in association with understand i ngs of inequa l ity and hierarchies in power rel ations. Membership of a category in a social d ivision can confer unequal oppor­ tunities of a ccess to desirabl e resources of all kinds, incl uding wealth, privi lege and the production and c ons umption of resources. Social theory has assoc iated social divisions of class, race and gender, and more re­ cently sexua lity and disabil ity, with inequalities which are woven i nto the very structure and fabric of British society and organ i zations. The devel­ opment of the social model of disability has, i n a general sense, brought disability i nto th i s arena of soc i o l ogy, to be considered and an a lysed a longside other social divisions in gene ral texts such as Alcock ( 1 99 6 ) and Payne ( 2000b ) . I t is a way o f understanding t h a t applies to, and connects, the experiences of disabled people with those of Black and ethnic minority groups, gays and lesbia ns, old people and women. The commonal ities in issues of racism, sexi sm , homophobia and disablism can be explored through themes such as prej udic i a l attitudes and d is­ criminatory language (Thom pson 1 9 9 7 ) . Alcock ( 1 9 96 ) , for insta nce, explici t l y com pa res the 'discri m i nation and disad v an t age expe rienced '

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by d isable d people with that experienced by people w ithin other social divisions. Nevertheless, this is also a n arena of co nside ra b l e compl e xity and debate, as is evident i n a compa rison between the followin g two q uot a­ t i ons. Rachel Hurst of Di s a b led People's International states: When you come toget h e r with other disabled p eop l e , you have the t i m e and opportunity to discuss what the s it u at i on really is - what oppression is _ who is oppressing you; wh e re oppression comes from, what d i sc r i m i n ation is a n d where it comes from . ( C o l e r i dg e 1 99 3 : 54)

On the other hand, Abu- Habi b, talking about the work of O X FA M with disabled women, particularly in the Middle East, states : We soon saw tha t w e needed t o consciously reject s i m p l i s t i c a n a l yse s which focus on d i s a b i l i ty in i s o l a t i on from o the r important issues and soc i a l re la t i on s . M ost importantly, we rec ogn i sed t h a t d isa bl e d peop l e a re not sexless: they are men a n d women with di fferent i n te rests , different charac­ teri st ics incl uding age , economic status, a sp ira t i o ns and different l i fe ex­ periences. ( 1 997: 1 1 ) Whilst the o ri e n tati o n of the first q u ota t i on is to w a rd commonal i ty or universality, the second s p eaks to diversity and di fference. In various guises, this interplay between commonality and diversity is central to reflections on develo ping disability theory from the vantage p oint of 'divi s ion s and hiera rchies'. From this v iewpoint we reflect first on the for m s of discrimi nation faced by d iffe r e nt groups, p a r t ic u l arl y groups whose day-to-day experi­ e nce involves m u l tiple discrimination. Though our remit is broad, our main focus is the experiences of disabled women from Black and ethnic mi n o r i ty communities. We reflect on how such experiences have been analysed by the people themselves, and on the arg u m e nt that the i nter­ action of socia l divisions creates simultaneous oppression . We then turn to questions of identity as a key c o ncept in the poli t i cs of social divi s ions. In part icula r, we explore evolving posi t ive identities in relation to new socia l movements, in contrast to the possibi lities for fragmented iden­ tities in the interaction among social d iv i s i ons. On t h is basis we explore the implications for disability theory per se, contrasting th e soc i o log i ca l position of h istorical materialism with that of the growing influe nce of postmodernity. Finally, we look towards fut u re possi bilities for building disability theory founded in commonality b u t speaking to diversity. This chapter draws upon research conducted by Vernon ( 1 99 8 b ) , which exam ined t he underlying c om pl exit y that makes up the experience of

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mu l t i ple oppression, gi v en the m ulti-faceted nature o f each of t he com­ ponent identities that shape, in part i cular, Black and ethnic minority disabled women 's da il y existe nce.

Reflecting

on

experience: simultaneous oppression ?

Socia l d i v isions ov er l ap, of course . A perso n 's employment position, for ins tanc e, may be associated wi th c lass, ge n der, age, ethnicity or disa bility, or indeed any combination of con tr i buti n g factors. In particular, we a re going to explore how social divi sions, particularly of gender, race and d isab i lity, conj oin and interact with one another in Black and ethnic minority d i sa bled women's l i ved e x perie n ce s . From this viewpoint, ge nder, class, race, sexual ity, age and disa b i l ity combine in important and v a ry i n g ways to exacerbate or modi fy t he experience of disa b l i sm , sexism and I or racism. The simulta neo u s discrimination faced by d i sa bled people from B l ack and ethnic minority c omm u n i ti es manifests itself in many ways in day­ to-da y l i v i ng. The evidence re l ating to this p a rt i cular group is sparse, but points t o major barriers at all levels of instit u t ion a l discrim i n ation. Two studies of the fa m i lies of Asian peop l e with lea rn i n g difficulties ( ADAPT 1 993; Azmi et al. 1 996 ) , for instance, p ro v ided evidence of high levels of poverty, w i th 69 per cent of families h a v ing no full-time wage earner, and ha lf of the fam ilies being on inc o me support. In terms of a tti t u des, 'there is a lack of u ndersta nding among the maj ority population concerning the life-style, social customs and religi o us practices of pe o ple from ethnic minority groups' (French and Vernon 1 997: 6 2 )

Discrimi nation within the provis i on of serv i c es has received pa rti c ular attention. One consisten t finding su ggests that d iscri m i n ation has been denied and rationalized by service pro v i ders through my t hs that, for i nstance, Black fa m i l ies prefer 'to l oo k after their own ' ( B axter 1 995 ) . T h e doc u men ted views o f Black disabled people c o nsiste n tly speak to e xperiences of segregation a n d marginalization within services. For in­ stance, i n t he i r research into the views a n d e x pe rie nces of young Black d isabled people, Big n a l l and Butt ( 2000) found feelings of segregation due to racism in settings seg reg a ted due to disablism, as evident in the fo l low i n g quo t a tions from two pa rticipants: I felt - well, it was alright a ft e r a while, b u t I think some of the teachers were a bit racist against me beca use I was t h e only brown one there . I felt a bit out of place, but it wa s all right a fter a wh i le . ( Pinky)

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You feel like, oh why wasn't there, you know, someone you r age as well and who's Asian, you know. You always see the white people but I used to get on with them as well . . . but you do think but why, where a rc the Asian people you know, someti mes. (Tu bassam)

Summarizing the evidence from several stu dies, Butt and M i rza state : The fact that major surveys o f the experience of disa bility persist i n hardly mentioning the experience of black disa bled people should not deter u s from appreciating the messages that emerge from existing work. Racism, sex ism and d isabl ism intermingle to amplify the need for supportive social care. However these same factors sometimes mean that black disabled people and their carers get a less than adequate service. ( Butt and Mirza 1 996: 94)

In their study of young Black disabled people's experiences and views, Bignall and Butt conclude: Our i nterviews revealed that most of these young people did not have the relevant information to help them achieve independence. Hardly any knew of new provisions, such as D i rect Payments, which would help with inde­ pendent living. Most people did not know where to get help or information they wanted, for example, to move into their own place or go to university. ( Bignall and Butt 2000 : 49)

Language is often seen as the main barrier to effective service provision. It is therefore assumed that an adequate supply of leaflets and interpreters in appropriate languages would solve the problem . However, com m unica­ tion consists of more than language skill s and literacy. The research suggests that even among British-born Eng l i sh-speaki ng Asians, there is considerable lack of knowledge of what services a re on offer. Research by Banton and Hirsch bears out the findings of previous research. They state: Communication problems are identified in all work in thi s area . Such problems are partly to do with l anguage differences, but a lso arise from the separate lives led by different ethnic groups in our society and the consequent unlikely coincidence of commun i cations a bout services arising through informal contacts. i Banton and Hirsch 2000 : 32 )

Perhaps the most consistent recommendation from research has been the necessity for the direct involvement of d isabled clients, including Black disabled clients, i n the planning of services (Butt and Box 1 997) . Again, this needs to be understood within the context of multi ple discrimin­ ation. Concl uding their study with Asian deaf young people and thei r families, Jones, Atkin and Ahmad state:

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identities are not closely tied to single issues and young people and their families simultaneously held on to different identity claims. To this exte nt, it i s not a question of forsaking one claim for an o t her and choosing, for instance, 'deafness' over 'ethnicity', but to negotiate the space to be deaf and other things as we l l . It is only through addressing these tensions that services will adequately respond to the needs of Asian deaf people and their families. (]ones et al. 200 1 : 6 8 )

In h e r analysis of experiences o f multiple oppression, Vernon ( 1 99 8 b ) suggests that, t o some extent, it i s of no relevance whether it w a s sexism, racism or disablism that contri buted to a particular experience . Laila, one of the partici pants i n her researc h , echoed feelings shared by many in the study: 'I feel oppression is the denial of opportunity. There are lots of things you have to battle against and i f they don't get you on one, they w i l l get you on a nother. ' Bl ack and ethnic minority disabled women's awareness of pa rticular issues changes accord i ng to the circumstances and situations they are confronted with. For example, if they cannot use women's health centres because of steps at the e n t rance , then disablism at that point may be the most significant a spect o f their oppression. If, on the other hand, a male doctor accuses them of being h ysterical , then sexi sm will be their grea test concern at that moment in time. In the latter situation it would be d i fficult to determine how much of the doctor's response is related to his attitude to women and h ow much to his perception that d isabled people are asexual. As Begum states: The very nature of simulta neous oppression means that as Black Disabled men and women, and Black Disabled lesbians and gay men, we cannot i d ent i fy a single source of oppression to reflect the reality o f our lives. No meani ngful ana lysis of multiple oppression can take place without an acknowledgement that Black Disabled people are subject to simultaneous oppression and as a consequence of this we cannot simply prioritise one aspect of our oppression to the exclusion of others. ( Begum 1 994: 3 5 )

Thus, as argued b y Stuart, Black d isa bled people are subjected t o a unique form of institutional discrimination which is different from the sum of racism experienced as a Black person and disablism experienced a s a disabled person. Their experiences 'isolate Black disa bled people and pl ace them at the margins of the ethnic m inority and disa bled populations' ( 1 99 3 : 95 ) . H i ll drew attention to the extremes of oppres­ sion faced by Black disabled people. She stated that the cumulative effect of discrimination is such that Black disa bled people are 'the most socially, economically and educationally deprived and oppressed members of society ' ( 1 9 9 1 : 6 ) .

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C ompara b l e a n a l y ses of the e x p eri enc e s of the i nt e ra c t i on of other soc i a l d ivisions - for e x a m ple , disa bled and old, di sa b l e d Jnd female, disa b l e d and gay or lesbian, a n d di s a bl e d an d wor king class, ind icate that there a re parallels. For i n st a nc e , in the most extensive research into the v iews and e x pe r ie n ce s of d is a b l ed lesbians and bisexua l women, th ere was e viden c e that they felt m a rg i n a l i ze d by the lesbian a n d ga y groups: 'many disabled l es bi a n a nd b i se xu a l women have e x per i e nced a lienation rather than nurturing and support from the l e s b i a n and gay community' ( G i l l espie-Sells et a l . 1 99 8 : 57}. The a s s oc i a t i on between soci a l div i s io n s and ex pe r i enc e s of d i scr i m i n ­ ation is complex, p a rt icu l a r l y in the interplay of factors. Bhavnani has po in te d out that Black women's experience cannot a l w a y s be assumed to be d i ffe re nt from white w o m e n , Black men or wh ite men in all contexts. The interplay of factors such as 'race', gender, class, age and disability create a mu l t i pl icity of d i scrimination. These may, in some contexts, s u g g e st simila rities with, as well as d iffe rence s between, white women a n d Black and white men. ( Bhavnani 1 994: p. viii)

The experience of racism may ce rt a i n l y be m o dified or e x a c e rbat ed by an i ndi vidua l 's class position. On th e axes of pri vilege I p e n a l t y ( H i i i- Collins 1 990), so c ia l c lass is an i mporta n t determinant of many crit i c a l factors . As class p ri vilege i ncreases, the effects of other pen a l t i e s is likely to dec rea s e . Equally, the effect of other p e n alt i e s may be e xacerbated by l owe r social class po sitio ning . Moreover, disa b lis m and rac i s m signifi­ c a n t l y lessen the chances of dis a bl e d people and Black and ethn i c minor­ ity people progress i ng h igh e r up the s oc i a l class l a d der, a fact evident i n the ir high unemploy me nt rates as wel l as their concentration i n low-paid and low-skilled j obs ( Brown 1 9 84; Oliver 1 99 1 ) . The im po rta nc e o f the s oc i o -ec on o mi c context for disabled people's lives is aptly illustrated by Morris ( 1 99 1 ) when she co n t ra s t s the s it u at i o n of two people who a r e both extensively pa ralyse d , yet whose options a n d l i fe - s tyl e s are very different: a l a wyer, who owns several homes and bought 'all the tech n o l ogy he needs to create i n de pe nde nc e for h i m s e l f ' (p. 1 4 1 ) , and a y o u ng wom an w i t h no mate ri a l resources who was consigned to a lo ng - stay hosp ital . Cl e a r ly, th en, c las s privilege can be a po we r fu l diluter of d i sc ri m ination , both economically a nd socially. Thus, a l t h ough the p oten tia l for discrimination is gre a tly i ncrea se d fo r tho s e w ho posses s m ul t i p le identities, because the ideologies of oppression do not operate independently of one a nother ( H i l i - Col lins 1 990; Miles 1 989), t he ir effects cannot be assumed to be i nvaria bly experienced

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simultaneously. For some, thei r p rivileged class position may modify the intersection of gender, race and I or disa bility. For others, their working­ c lass backgroun d and / or sexuality may heighten the experience of gender, race and I or disability. Hence, the experience of disab l ism, racism or sexism may be modified or e xacerbated by the presence of privileges or other penalties respectively. Furthermore, multiple penalties may increase the experience of one penalty. For example, disabled women's expe r ience of sexism is often exacerbated by the intersection of gender and disabil ity ( Lloy d 1 9 92; Lonsda le 1 9 9 0 ) . Gender, class, race, sexual ity, age a nd d isa bility are not, however, invariably expe r i enced at the same time. Although B l ack and ethn ic mi nority d isabled women are simultaneously sub j ect to institu­ tional manifestations of gender, race and disability, on an individual level the experience varies c o nsiderably from day to day, depend ing on the context. Sometimes, the oppression rela tes to disabil ity in a n obvious manner, so, for example, when two participants in Vernon's ( 1 998b) research, Nelam and Laila, were refused interviews a fter, but not before, their poten tial employers had knowledge of thei r having an impai r ment. At other times, it may be any combi nation of disability, race and gender exacerbating the i r experience. For example, Emma (also from Vernon's researc h ) was denied a mainstream m anagement post on the assump ­ tion that because of her visual impairment she would 'not cope' . The assumption and pronouncement that she would not 'co pe' are disabling i n t hemselves. However, Emma felt that the underlying reason was racism, beca use they did not want a Black person as a manager in the counciL Thus, disability seem s to have been used to mask racism, al­ though it is possible that both d isabi l ity and race played a part in the denial of promotion for Emma. In her research with physi otherapists French (200 1 ) also found that it can be d i fficult to know whether it was age, gender, disa bility or something else a bout the participants that prevented promotion. To summarize, it would seem that factors of gender, race, class and disa bility interact a n d impinge differently in different situations, some­ times in combination and sometimes individually, e ither exacerbating or modifying the experience of discrimination, d epending on the context.

Reflecting

on

identity

The concept of identity has i ncreasi ngly come to prominence i n areas of inqui ry across the soc ial sciences (Jenkins 1 9 96 ) . In relation to social divisions, q uestions of identi t y take analys i s ex pl i c i t l y into the p o litical

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arena. Hetherington s ugge sts that identity has become sign ificant through resistance to dominance in unequal power relations: One of the main issues be h ind this interest in identity and in identity politics more generally has been the relationship between m a rgina lisation and a pol itics of resistance, and a ffirmative, e mpo w e r i n g choices o f identity and a politics of d i fference. ( Hetheri ngron 1 99 B : 2 1 )

In relation to disa bil ity, Vernon ( 1 9 9 8 b ) found a c o m p l ex relationship between e x p e rie n ce s of multiple oppression and i d en t i ty. I n the case of the following partici pant, for instance, race and cultural eth n ic identity seemed to pre d omi na te over disa bility identity. Shazia felt that because her impairments a re h i d d e n , racism is more pr edomina n t in her experi­ ence when she is away fro m her family, as the visibil ity of her skin colour is there for all to see and to m a rk her out as being different: For thirty years I h a ve experienced racial discri mination on a daily basis and i t 's something that defines me. That's why I say Black and Asian before disabled for me. It's absolutely fundamenta l to my life. It doesn't matter where I have been, at home, on the street, i n ed uca t i o n I have faced it and I am still facing it. My impairments I live with. Being a woman I am proud of. I don't see th e m as negatively as I do being Bla ck . It's not being Black that's negative, but it's the experience of it wh ic h is such that you think, unless you are Black you a re not going to unde rsta nd th is, the fea r on a d a i l y level, the fea r of bei ng attacked beca u se of your ski n colour.

Although the threat of racism is far more predom inant in Shaz ia's life, i f her impairments h a d been more v isib l e , i t may be that her sense of v u lnerability would have been greater rather than less. It is apparent, then, that the more overt the discrimination, t h e more heightened one's awareness a nd sense of vulnera bility around that par­ ticular identity. There is a clear i nterrelationshi p between d isabi l i t y iden­ tity and disability politics. As Monks states: People who are socially excluded and oppressed, a n d who a re often a lso defined as l a ck i ng qua lities of a normative social being, may find solidarity in the shared experience of e xcl u s i on itse l f . . . . The 'communities' which emerge may become po l it i c a l l y active . . . Experience of t.he interdepend­ ence, mutuality and solida rity which arise from shared activities and com­ munication i s an important part of membership, even o f di rect political action . (Monks 1 999: 7 1 )

The growth o f the disa bled people's movement and the emergence of the social model of disability were the fertile g rou nd s for the positive

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a ffirmative of disa bl ed identity. Barnes, Mercer and Shakespeare ( 1 999: 1 78 ) suggest that involvement i n social protest has been the 'cata lyst to a more positive disabled identity'. Oliver and Barnes state that 'The re­ evaluation of a disabled identity within a politica l context i nvolves processes which challenge traditional views of disabled people as incap­ able, powerless and passive' ( 1 99 8 : 7 1 ). Richard Wood summarizes these developments as follows: Discovering o u r identity as disabled people is very, very important. It's still i mporta n t today, otherwise people won't value themselves. I think that is probably the b i ggest s uccess that the movement has been a b le to point to. It i s ou r m ovement, nobody else owns it. We know who we a re . I think we're fairly clear a bout where we're g o i ng and why we're going there. (Camp)ell and Ol i v e r 1 996: 124)

roots of disability arts lie in the politicizing of disability issues. As Shakespeare et al. state : 'Drama, ca baret, writing and visual a rts have been harnessed to cha llenge negative i mages, and build a sense of unity' ( 1 99 6 : 1 8 6 ) . Fin kelstein, who was one of the founders of the London Disability Arts Forum ( LOAF) in 1 9 87, stated that it is 'essential for us to create our own pu blic i mage, based upon free acceptance of our d istinctive group identity' ( Ca m pbel l and Ol iver 1 996 ) . This devel­ opment of identity has i ndeed been central to d isability arts, chall enging the values that underlie institutional discrimination. Through song lyrics, poetry, writing, drama and so on, disabled people have ce lebrated di ffer­ ence and rejected the ideology of no r m ality wherein disabled people a re deva l u ed as 'a bnormal'. They are creati ng images of strength and pride, the antithesis of dependency and helplessness (Swain and French 2000). Whilst new social movements have produced new foci for the politics of collective identities, for many social scientists the broad picture is one of fractured, fluid, multiple and contested identities. Accordi ng to Bradley ( 1 9 96 : 23 ) , for instance, identity is no longer predom inantly c lass-based , and people can now draw their sense o f identity from a much broader range of sources, including gender, age, marital status, sexual preference, consumption patterns and , we would add, disability. Furthermore, identity is a matter of ' becomi ng' rather than simply ' being': Furthermore, t h e

Far from being ete r n a l l y fixed in s o m e essenti a l i ud past, they are subject to continuous ' p l a y ' of h i story, c u lt u re and powe r . . . identities a re the

the

names we give to the d i fferent ways we a re posi tioned by, and posi tion n a r rati ves o f the pa st. ( Ha l l 1 990: 225 )

o u rs e l ves within, the

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In a context of diversity and fluidity, identity is contested with i n conflicts of interest and power inequal ities. Marsh provides the fol lowing exa mple: [AI Catholic male homosexual from a working-class background i n I reland who is the head of a suburban girls' comprehensive school i n Yorkshi re will have to j uggle with a range of separate and competing claims on his self i mage which raise questions of gender, sexual ity, religion , nationality, class and ethnicity. (Marsh 2000: 3 1 )

New social movements are expressions o f collective identity, but they are also sites of contested identities . Williams shows how the commonality between women stressed by the feminism of the 1 970s has been cha i­ lenged: Femin ism based on Black, lesbian and disabled poli tics has pointed to the need to deconstruct the category of 'woman' in order to understand the complex and inter-connected range of identities and subject positions through which w omen's experiences are c onstituted, a s well a s the ways these also change over time and place. (Williams 1 9 96: 69)

Modood ( 1 997) has traced the complex changes i n patterns of ethnic i dentity for second- and third-generation members of mi nority ethnic groups in B r i t a in He suggests that identities are more consciously chosen, publicly celebrated, debated and contested. Numerous commentators have i dentified parallel patterns of fragmen­ tation in disabled identities . A number of related a rguments can be identified. Perhaps first is the possibility of fragmentation within the movement. Monks, for instance, c laims that: .

By the ea rly 1 990s there was undeniable d i fferentiation of the movement motivated by claims of particular experience of disa blement. A current major dilemma for the movement, then, l ies in the membershi p's recogni­ tion of pecu liarities of experience being coupled with a commitment to collective political action. ( Monks 1 999: 75 )

Morris writes: Black disabled people and disabled gay men and lesbians express their particular concerns in particular contexts . . . such groups should not be treated as an 'added on' optional extra to a more general analysis of d isability. (Morris 1 9 9 1 : 12)

Such criticisms are repeatedly endorsed from different viewpoi nts by Camp bell and Oliver ( 1 996}. For instance, Hill states:

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I got fed u p t o the back teeth o f b e i n g told b y white disabled people that as

black disabled people we shouldn't be concerned with issues of race and disabil ity; that we sho u l d be concerned only with i ssues of disability because that was the fight; that was t h e most important element in our character. I am of the belief that black disabled people share a lot in common with white disabled people. We have lots of issues in common but we cannot ignore the fact that to a very large extent t here still is that added element of racism that we have to encounter as black people. I didn't think that the white disability movement was taking that on boa r d . ( Camp­ bell and Ol iver 1 996: 1 32 )

This fragmentation is potentially limitless with the interaction of di ffer­ ent social d ivisions. For example, REGARD is a campaigning organiza­ tion of disabled lesbians and gay men established to address the heterosexism that exists within the disabled people's movement and communities. However, the research by Gillespie-Sells, H i l l and Robbins suggests that this group is not representative of all disabled lesbians and gay men: Discussion with REGARD revea led a reluctance on beha lf of Black dis­ a bled lesbians to 'come out' and be identified. The reason put forwa rd was homophobia i n t h e d i sability community. . . . There were also problems of anti - lesbianism within families and minority ethnic communities; in add­ ition there was a l ack of support to tackle the hostility that asserting their sexua lity a roused. ( G illespie-Sells et al. 1 998: 62)

Disabled refugees and asylum seekers a re another more recent addition to the list of groups whose interests a re not ful l y taken into account by single issue move ments. They 'constitute one of the most disadvantaged groups with i n our society' (Roberts 2000: 945 ) . Disabled refugees and asyl um seekers are 'lost in the system' because both 'the disability move­ ment and the refugee community focus thei r attention . . . on issues affecting the majority of their populations and fail to engage adequately with issues which affect a sma ll minority'. This is a feature of m ost social movements. It is i ronical that the very thing they are united on is also the very thing that leads to division between them - that is, ' identity and d i fference' . Thus, as a Black femi­ nist writer, Audrey Lorde, has stated: I call a mythical male, young, hetero­

Somewhere on the edge of consciousness, there is what norm . . . this norm is usually defined a s w hite, thin,

sexual, Christian and financia lly secure. !t is with this mythical norm that the trappings of powe r reside within this society. Those of u s who stand outside that power o fte n ide n t i fy one way i n which we a r c di fferent, and

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we assume that to be the p r i m a ry ca use of a l l oppression, forgetting o th e r distortions around difference, some of which we ourselves may be practis­ ing. ( 1 984: 3 7 )

The experience of Black disa bled people w i t h i n t h e disa bled people's movement demonstrates this, as H i l l stated: As w a s the case w ithin soc iety generally, s o it w a s w i t h i n t h e disa bled c o m m u n i t ie s - two s oc i e t i e s were d e ve l op i ng , one black, one white separate and unequal . . . . as far as the d isability movement was c oncerned, disa blism alw a y s took precedence, not only over rac i s m but also over other human rights. (Hill 1 994 : 7 5)

This attitude is also prev a l ent in the Black community, as McDona ld's experience of his family's reaction demonstrates: 'to fight for the rights of black people is one thing; to fight for the rights of disa bled people is something else, there is not enough time and energy to fight two di fferent wars' ( 1 99 1 : 3 ) . Social movements orga nized around single issue politics force individ­ uals with multiple negative identities - s uch as disa bled Black people - to prioritize one or the other struggle. The interplay between identity, difference, politics a nd power is far more complex. As Anita expla i ned in Vernon's ( 1 998b) research: Lot of the t i m e you c a n ' t separate it. I thi n k tha t your gender, race and disa bility combine at times to create a discrimina tory experience. for example, in e d uc a t i on it was disabil ity, in work it w a s race and disabi lity and at home it i s being a woman that predominates one's experience. By se p a r ati ng it, you lose the tota l i ty of th e person's experience.

Jackie, who i s a woman , a Black person and a person with lea rning difficulties, expressed a similar view: 'My view is that I can't separate them. This is me. I relate to them all in di fferent ways' (Walmsley and Downer 1 997: 4 5 ) . It can be argued that the oppression that different groups experience is unique, and thus underpins different identities: 'it may be necessary to move away from the unitary, essentialist disabi ­ lity identity and think of a variety of disabil ity identities' (Shakespeare 1 99 6 : 1 1 0 ) . To summarize, identity - o r rather, identities - can b e viewed a s multi­ faceted and fluid. Indeed, it is questionable whether Black and ethnic minority disabled people , for instance, can or should be considered as a heterogeneous group, or 'Black and disabled' as a s table i d entity. Wil­ liams states, 'At one or many moments, in one or many p l aces issues o f

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disa bility may b e h igh lighted; at a not h er moment the inequalities o f c l ass may p redo m inate for the sa m e person or group' ( 1 9 92 : 2 1 5 ) . From this

v iewpoint, in a social context of rapid change , there is an ever expanding range of identi ty choices and explanations of t he socia l world i n terms of ' l arge - scale and re l atively stable social categories which do violence to the complexity of the everyday e x pe rie nces of individuals' ( Mason 2000: 1 1 1 ) .

Reflecting on disability theory Turni n g to disa bil ity theory per se, no tio n s of social divisions and h ier­ archy are c e n tra l . The fou ndations of the s ocia l model, and hence dis­ ability theory, lie i n historical mate r ial i sm , with the most often cited texts being F inkelstein ( 1 980) and O liver ( 1 9 90 ) . In a more recent statement Oliver expla i ns: 'the economy, through both the o pe ra tion of the labour market and the social organisation of work, plays a key role in p rodu c ing the ca tegory disability and in determi ning s o cieta l responses to disabled p eople' ( 1 996: 33 ) . In this accoun t, disabil ity, in p resent - day Western society, is a production of the ec o nomi c and soc i a l power relations of capitalism, and disabi lity theory is rooted in materialist th e ory of the p r oduction of social division. The foun d a t i o n of disabil ity theory, it can be argued , asso ciates d i sabi l ity with social class as the form of social inequality that has rece iv ed the most atten ti on in sociology ( Bradley 1 996 ) . In Marxist theory, inequalities o f w e a lth and po we r a re a direct product of the de v e l op ing capital ist s y stem , widening t he gap between those who own the means of prod uction, the bou rgeoisie, and the worki n g class, or p roletariat: The epoch of the bourgeoisie possesses . . . this d istinctive feature: it has simpl ified the class antagonisms. Society as a whole i s mo re and more splitting into two great hostile camps, i n to two great classes directly facing each other - bou rgeoisie and proletariat . ( Ma rx and Engels 1 9 34: 1 0 )

The same theoretical basis offers a framework that inco rp orates the analysis of disabl i ng power relations a l ongs ide ot h er socia l d ivisions: 'T h e op pression that disabled p eop l e face i s rooted i n the economic and soci a l structures of c a p i t alis m which themselves produce racism, sexism , homo p hobia , ageism and d isa blism' ( O i iver 1 996: 3 3 ) . A m a teri a l i st account of the c r eation of disabil ity pl ace s ideol ogy at the centre of the a n alysis of social division. Thompson ( 1 997) suggests that a dom inant ideology operates i n a number o f wa ys, by :

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A s w e have mapped earlier, however, recognition o f diversi ty of experi­ ence and i dentity in terms of multiple social divisions challenges the development of a comprehensive theoretical account. Perhaps the most straightforward references to other social d ivisions and m ovements is through comparison to inform and understand developments within the disabled people's movement and disa bility theory. Priestley, for in stance, s uggests that: For an emergent movement, the recognition of difference may give rise to fears of fragme ntation. As the experi ence of the women's movement or the Black civil rights movement shows, such fears are easily manifested in a reluctance to acknowledge separatism or specific inte rest groups. Consequently, there may be much for the Disabled People's Movement to learn from issues of difference within other social movements. ( Priestley 1 999: 66}

Such insights are not as recent as Priestley might seem to imply - at least not for Finkelstein, who was imprisoned and then deported having actively fought agai nst apartheid in South Africa : 'So some of the a rguments I was raising about oppression of disabled people origin­ ated from oppression of Black people' (quoted in Campbell and Ol iver 1 996: 1 2 0 ) . Two related bodies of critique h ave emanated from feminist academics and activists and from writers in postmodernist schools of thought. It needs to be emphas ized that both are broad sources rather than single coherence perspectives. Two recent contri butions to the feminist(s) an­ alysis of disability i ssues, for instance, are grounded in radical ly different stances, Thomas ( 1 99 9 ) being a materia list feminist and Fawcett (2000) a postmodernist femini st. It is difficult to capture these substantial and complex analyses within succinct summaries, though the conflicting foundations are clear. Thomas i n her book is starting o u t with a social-relational conception o f disability, a n d seeking to explain disablism in terms of its roots in the level of development of the productive forces, the social relations of production and reproduction, and the cultural formations and ideologies in society. (Thomas 1 9 99: 143 )

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Postmodernists eschew grand narratives, overarching frameworks and all-encompassing theoretical perspectives. Postmodernists critique any emphasis on commonalities and coherence and celebrate fragmentation. Fawcett writes of critiques of materialist accounts from a postmodernist orientation: Such critiques include universalist conceptions of basic human need . . . and notions of i nalienable human rights based on fundamental citizenship entitlements . Postmodern orientations can therefore be seen to remove the very foundation of disa b ility rights movements based on the social model of disability and to severely challenge modernist feminist move­ ments. ( Fawcett 2000: 1 25 )

The fragmentation of experience and identity finds its theoretical expres­ sion in strong postmodernist orientations. Wi lliams ( 1 996) traces parallel developments in feminism, and in doing so refers to disability pol itics, which is ironic, given the general neglect of disability i ssues by feminist ana lysis and activism (Morris 1 99 6 ): Feminism based o n Black, lesbian and disabled politics has pointed to the need to deconstruct the category 'woman' in order to understand the complex and inter-connected range of identities and subject positions through which w o m e n s experiences are constituted, a s well as the way these a lso change over time and place. (Williams 1 996: 69) '

The same l i ne of reasoning poi nts to the need to deconstruct the category of 'disa bled people'. Whilst postmodernist thought has proved very infl uential in the social sciences, including disabil ity stud ies, there has been a backlash and a reassertion of modernity, though 'one less s u re of itself, more uncertain, detraditionalised, provisional and risk ridden - in general, more a reflect­ ive modernity' ( Hetherington 1 99 8 : 7 ) . In terms of disability theory, Barton ( 1 9 96: 9) warns against the ' regressive relativism of particular forms of postmodernism'. Linking theoretical development with devel­ opments within the movement, Finkelstein states: Emancipatory movements are usually started by people on the political left but as the new-born movement manages to fumble its way through the first muddy barriers, not w ithout casualties, individuals to the centre and right of the pol itical spectrum all too often 'discover' t he movement's message and cla im it for their own. ( Finkelstein 200 1 : 1 3 )

Perhaps the most serious criticis m of postmodernity (or forms of post­ modernity), and one which takes us into our concl uding section, is that

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pos i ted by Cr ook : ' An i nabi lit y to s pec i fy possi b l e mechanisms of change, and an i na bi lity to state why c hange is better than n o c ha n ge ' ( 1 990: 59). To s u mmari ze, the concepts of division a nd hierarchy have a substan­ tial and contested role to play within socia l t he o ry ge nera l ly, and disabil­ ity theory in p a rt ic u l a r. Essentially, the debate addresses the pol itics of disa bil ity in terms of t h e or i z i n g d ay - t o- d a y experience, pe r s o n a l identity, collective ide n t it y and social change.

Conclusion As many disabled commentators recognize, disabled pe o ple will not judge disabil i ty t heo ry by its contri bution to academic or research discourses, but u l t i m ately by its role i n social c h a n ge , in the emancipation of disabled people. It is in these terms that the consideration of social divisions needs to i n for m the devel o p m en t of disabi lity the or y. Again, debates in feminism are pertinent. Ramazanoglu ( 1 989) put forward t he view, endorsed by others, that feminists should work positively with the contradiction that women are simultaneously united through the i m ba l ance of powe r rela­ tions between women and men in the economic and social structures of society, but divided through multiple social divisions. Langan states: This i nv o l v e s challenging the nature of power, whoever holds it, including

being se nsitive to the power some women have over o t he r women, and the need, for example, for wh i te feminists to confront their own racism. This appr o a c h pla ce s a greater em p hasis on the active, resisting role of women. ( Langan 1 992: 5 )

A s w e have i l lustrated in this ch a p te r, similar contradictions o f oppres­ sion are apparent for disabled people. Jackie Downer, who has been a central figure in the Bl ack People First movement, states : Black People First? If you see one you can tell me - no such thing. lt was gonna exist but it doesn't. People need space and choice - Black, gay men and women, c hi l d re n . I set up a Black friendly gro u p and it was stressful. People were saying 'Why c a n't we have mixed groups , what's wrong with us ?' You can s egrega t e yoursel f, people need to unite a nd segregating doesn't help the mo v e m e n t . ( Q uoted in G o o d l e y 2000: 8 3 )

I ndeed, it can be a rgued that fragmentation has played a major role histori c ally in the social op p ress i on of di sa bl e d people. Segregated sc h oo lin g, for insta nce, not only separated disabled people from non­ disa bled pe o p le in schools and i n their local communities; it sepa rated

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disabled people from other disabled people, as categorized by impair­ ments, and continues to do so. Disabled people were, and still are, separated by c harity organizations, in day centres, residential homes and so on. In some 'homes', such as the large-scale hos p i tals for people label led ' men ta l l y handicapped', women with learning difficulties have been separated from men with learning di fficulties, as an expression of policy a n d service provision of eugenics. The challenges of addressing the contradictions of c ommonality and d iversity are critical to disability theory evolving from the social model of disa bility and promoting emancipation from social oppression. They involve theorizi ng the rel ationship between disa b i lity, ethnicity, sexua l ity, age and gender, to promote the real i zation of i ncl usive disability theory and an inclusive disabled people's movement. Barnes states: The politics of disablement is about far more than disabled people; it is a bout challenging o p p re ssion in all its forms . . . . Like racism, se x i sm , het­ erosexism and all other forms of social oppression, [disability) is a h u m a n creation . It is impossible, therefore, to confront one type of oppression wit h o u t confronting them all and, o f course, the cultural values that c reated and sustain them. ( 1 996a : p. xii) Vernon

endorses this view, arguing that:

The experience o f disa bled Bla ck peopl e , women, gay men and lesbians, older people and those from the work ing c l a s s is fully integ r ate d to take accounr of the fact that the experience is often exacerbated by the inter­ action of other forms of oppressions. The pol itics of eradicating disability, therefore, must take into account the whole o pp res s i ve structure of our society and be careful to challenge all forms of oppre ssio n wherever it is found. ( 1 99 8 a : 209 )

It is the nature of oppression in the capitalist system, at least in prese n t­ da y Western so cieties, that oppression fragments social divisions and casts one group against another - i n cludi n g poor white people a ga inst poor Black people, disabled people against poor people, disa bled people against women, a nd Black disabled women against whi te disabled men. Thus, 'disabled people have no choice but to attempt to build a better world because it is i mpossible to have a vision of inclusionary capitalism: we a l l need a world where impairment is va l ued and celebrated and all disabling barriers a re erad icated. S uc h a world wou ld be inclusionary for al l ' ( Oiiver a nd Ba rncs 1 99 8 : 62 ) . Disabled people, too, ha ve no choice but to struggle towards this vision collectively, to unity that gives fu ll recognition to d iversi ty.

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How might we summarize the implications for future theoretical de­ velopments ? To paraph rase Hetherington ( 1 99 8 ) , we do so only with uncertainty and provisiona lly. Yet there a re signposts. Fi rst, theorizing disability should retain and strengthen a nalyses of the material forces that create poverty, unequal structures and power re lations, and i nstitu­ tionalized d iscrimination. The second imperative for developing theory is that it 'put disabled people in a leading role for constr uctive social change - a complete reversal of expectations about disabled people' ( Finkelstein 200 1 : 1 1 ) . Finally, theoretical development s ho u ld recognize that eman­ cipation of disabled people can never be realized in a society that sustains racism, sexism, homophobia and ageism. Theorizing disability from the viewpoint of social divisions and hierarchies is generated by the recogni­ tion of both commonalities and diversity.

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Williams, F. 1 992: Som ew he re over the rainbow: universality and d i v ers i ty in s o ci a l pol icy. In N. Manning and N. Page (eds ) , Social Policy Ret•iew, London: Social Policy Association, 200-1 9 . Williams, F. 1 996 : Postmodernism, feminism an d the question of difference. In N. Pa rto n ( ed . ) , Social Theory, Social Change and S o c ial Work, London: Ro u tl edge .

6 History, Pow er and Identity

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Introduction History is a missing piece of the j igsaw in disability studies. Whereas the field has expanded from its origins in social theory and social policy to include poli tics, culture, leisure and the medi a , historical perspectives across the entire range of disabled people 's experiences are v i rtu a l l y non­ existent. The purpose of this chapter is to show why it is important to study the past and how i t is done. An evaluation of the historica l models developed by social scientists i s used to l a u nch a social history of disa b i l ­ ity in which materialism a n d culturalism are complementary rathe r than mutual l y exclusive. A compre hensive historical survey is not attempted . Rather, attention focuses on the interface between physica l i m pa i rment,

charity and medicine in the late nineteenth and early twentieth centuries.

Surveillance procedures, a n d resistance to them, will be exami ned with the help of a case study of the Nottingham and District Cripples' Guild, thus demonstrating the use of a historical source. And the cha pter wil l conclude by exploring the pl ace o f the past i n shaping t h e present identities of disa bled people. Bur it is appropriate to begin by looking at the relationship between sociology and hi story.

Sociology and history The neglect of history is largely due to the formative infl uence of soci­ ology in disa bil ity studies. Both history and socio l ogy emerged from the

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same intellectual sta ble, sharing in later ni neteenth-century Britain a positivist comm itment to the obj ective understanding of the human condition ( Bentley 1 9 99; Warren 1 99 8 ) . At this early stage in the growth of modern academic disciplines, the boundaries between the humanities and the social sciences were more permeable than they are today. There­ fore, the founding fathers of sociology were not averse to addressi ng the historical processes of social change. Herbert S pencer ( 1 820-1 903 ), for example, anticipated Darwin in argui ng that societies evolved l i ke bio­ logical organisms through peaceful adaptation and ferocious combat (Burrow 1 96 6 ). Si milarly, Marx ( 1 8 1 8-8 3 ) posited a tran sition from ancient to feudal, capitalist and sociali st modes of production, driven by class conflict which arose when economic forces and social relations clashed ( Marx 1 96 1 ). Yet, in tracking how societies evolved, these first sociologists were already employing a methodology which differed from that of thei r contemporary historians. The divide open ing up was between the 'nomothetic' and the 'idio­ graphic' approaches. Sociologists adopted a nomothetic methodology, which sought 'universals rather than particulars', amalgamated individ­ ual events into abstractions, privileged 'structure over h u man agency', and took 'pride i n conceptual rigour'. Contrariwise, historians fol lowed an idiographic methodology, which a ddressed the particular rather than the universal, eschewed the abstract for the concrete, gave priority to agency rather than structure, and engaged in the meticulous scrutiny of empirical evi dence (Wilson 1 993: 3 6 ) . The recent postmodernist assault on rationality has challenged the desi re of both disciplines for objective knowledge (Jenkins 1 99 1 ; Lyon 1994 ) . According to Anthony Giddens, however, the nomothetic I idiographic dichotomy is untenable. Giddens insists that: Structure, or structural properties, . . . exist only in so far as there is con­ tinuity i n social reproduction a cr oss time and space. And such continuity in turn exists only in and through the reflexively monitored activities of situated actors, having a range of intended and unintended consequences.

Therefore, 'every research i nvestigation i n the social sciences or history is involved in relating action to structure', and '[n]o amount of j uggling with abstract concepts could substitute for the direct study of such problems in the actual contexts of i nteraction' ( Giddens 1 9 84: 2 1 2, 2 1 9, 358, 3 62 ) . But however plausible i n theory, this fusion has not materialized i n practice. H i storians, whilst making considerable use of sociological ideas, have resisted the 'mechanica l ' application of models or polar

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types; and any theoretical enterprises have bee n pragmatic, tlex i ble and 'grounded' in 'the materials themselves' w ithout 'ad herence to a pre­ e xisting theory' (Jordanova 2000: 6 8-70 ) . It fol lows that most historian s d o not dea l readily with t h e conceptual strategies which arc t h e stuff of sociology. No less an impediment to collaboration are d iffering stances towards empirical evidence. Though the quantitative and qua litativ e social surv ey personifies sociology's distinguished empirical trad ition, data a re collected to test for the genera l val idity of theoretical concepts. History, conversely, starts from the empirical deta i l . Initially preoccupied with the written documentary record (e.g., d iaries, Parl iamenta ry Papers, minute-books, and the press) , it has now come to recognize the import­ ance of oral testimonies, literary texts and visua l representations (e.g . , a rt, architecture, fi l m and photography ) . But all these sources are sub­ j ected to a forensic exami nation, which scrutinizes their provenance and content. Are they authentic ? Who was the author? Why were they produced? And what do they d isc lose about the historica l p roblem under review (Marwick 1 970) ? From the answers to these q uestions, h istorians are more likely to construct na rratives of individual agency than analyses of social structu re. And, as a result, their work may be i naccessi ble to social scientists trained to think in conceptual ways. Compou nding the problem of methodology is the orientation of his­ torical subject matter. When the discipl i ne began to professionalize in Britain, from the 1 860s, it converged on the state and beca m e preocc u­ pied with constitutional, administrative, l egal, ecclesiastica l , imperial a nd diplomatic history. This bias persists, but from the outset soci al history snapped at the heels of its stronger sibling. I n his famous English Social History, published during World War 11, G. M. Trevelyan defined the subject 'negatively as the history of a people w ith the pol itics left out' ( 1 9 73 : p . v i i ) . Trevelyan was continuing a literary genre which pre-dated the 1 860s a nd targeted the ' popular' market. Since the late n ineteenth century, however, 'professiona l ' social h istories had appeared for an academic readershi p . As in sociology, evolutionary writers produced accounts based on the Darwinian 'survival of the fittest' (Trail l and Mann 1 895), and Marxist writers produced accounts based on the evils of the economic system (Hammond and Hammond 1 934). Ma rxism was the more influential, ultimate l y inspiring a generation of historians after 1 945. However, it was not until the 1 9 6 0s that social history in Britain became a mature sub-discipline with the proficiency to locate social issues such as disability within their historical contexts ( Bentley 1 999; Wilson 1 99 3 ) . Though regarded b y some as economic a l l y determ inist, t h e best Marx­ ist historiography fashioned sophisticated arg u ments that were anchored

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to a close analysis o f historica l records (Warren 1 9 9 8 ) . I n The Making of the English Work ing Class { 1 9 6 3 ) , for instance, Edward Thompson com­ plemented economic conditioning with individual agency, acquired from a growing awareness of change and from socio-political experiments directed at inequal ities. Equally important was the way in which such initiatives encouraged reflection a bout the nature of history. Fi rst, there was greater receptiveness to ideas from other disciplines. Contributing to the Times Literary Supplement in 1 966, Keith Thomas thus maintained that the social sciences would augment the historian's 'social vocabulary', that statistical methods would permit the more accurate measurement of historical trends, and that social anthropology and social psychology would bring exciting insights. Equipped with these new tools, the social historian would be able to explain 'the workings of human society and the fluctuations in human affairs' which had long defeated the mainstream discipline . Second, there was a commitment 'to rescue the poor . . . from the enormous condescension of posteri ty' {Thompson, 1 96 3 : 1 3 ) . The result was a more catholic agenda, in which the ordina ry lives of everyday people joined the dominant narrative o f political elites. But though we now have vi brant social histories of class, gender and race, the marginality o f d i sabled people has prevented them from penetrati ng territory won by other disadvantaged groups. Soc i a l exclusion has been matched by intel­ lectual exclusion.

Histories of disability So far we have attri buted the shortage of disabi l ity histories to three factors: the a lien nature of historical methodology to social scientists, the late arrival of socia l history as a special ism within historical scholarship, and the translation of d isa bled people's social discrimi nation to academic discourse. As a consequence, the histories of disability which have been constructed are largely framed within the nomothetic mode of the social sciences. Indebted to Ma rxism and underpinned by the materialism of the social model, these studies have favoured a developmenta l a p p roach, homing in on the tra nsition from feudalism to modern industri a l capital­ ism. Vie Finkelstein began the debate in 1 9 8 0 with his provocative but imprecise identification of three 'phases ' . In phase 1, impai red people were congregated at the bottom of the economic pile in the company of poorly paid workers, the unemployed and the mentally i l l . Phase 2 saw the emergence of segregated disabi lity institutions in response to 'a new prod uctive technology'. ' ( L jarge scale i ndustry with production­ lines geared to able- bodied norms' excluded impa i red people who had

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previously been integrated, socially active members of their class and community. Furthermore, the growth of hospital-based medicine encour­ aged the expansion of professionals whose expert knowledge was disab­ ling. But, paradoxically, public services also helped disa bled people to acquire social independence and tackle the professional wntrol of their l ives. It was this critique which gave birth to the social mode l and the onset of phase 3 ( Finkelstein 1 9 80: 8-1 1 ) . Finkelstein's schema was valuable for the way in which industrializa­ tion was h ighlighted. On his own admission, however, it sought 'to say something about the context in which attitudes are formed', and was not 'a h istorical analysis of disability' ( Finkelstein 1 9 8 0 : 8 ) . Therefore, the dynamics of the industrial process and its social and political outcomes were not made plain. Michael Oliver has tackled these deficiencies. First, he complicated the influence of the 'economic base' by argui ng that whereas ful l y-fledged capitalism was excl usive, 'agriculture or small­ sca le industry . . . did not precl ude the great majority of disa bled people from participating in the production process' . Next, the ' m ode of thought' and the problem of order were added to the impact of the economy. Essentia lly, O l i ver argued that the evolution of inte llectual concepts, ' from a religious interpretation of real ity' to a metaphysical and then a scientific one, interacted with the disruption thrown up by the rise of capitalism to alter 'historical perceptions of disabil ity' and to propagate new medical and i nstitutional methods for subdu ing deviancy. This tripartite model of economy, i deology and politics advan..:ed a far more subtle understanding of economic development than Finkelstein's, and the dissecti on of social policies was situated within a political matrix which included beliefs and val ues and the policing of disorder ( O liver 1 990: 27-3 0 ) . Nevertheless, Oliver endorsed the supposition that impair­ ment in pre-industrial Britain was for the most part unproblematic: a trap into which Brendan G leeson has also fal len. Gleeson's d istinctive contribution was his geographical insight: the argument that 'the historical production of space ' was 'a contested process where the exercise of power largely determines who benefits and who loses from the creation of new places and l andscapes' . What he advocated was an 'embodied m aterialism', in which disability was 'seen as part of a broader process of social embodiment - the a scription of roles and representations to body types that varies in time and space'. This theoretical standpoint was executed i n a comparison of feudal England and the industrial city. Gleeson maintained that physical i mpair­ ment was so commonplace among the medieval peasantry that it was 'probably a general feature of peasant social space' ; b odily impai rment may have 'marked itsel f out', but only when it had 'spiritual significa nce'

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or threatened le p ro sy. Wit h t h e grad u al shift to i n dust r i a l capitalism and urban l i ving, t h i s in c lus i o n was sacrificed. One disabling feature of the . . . city was the new separation of home and work, a socio-spatial phenomenon which was all but a bse n t in the feudal era . . . . In addition, industrial workplaces were structured and used in ways that d isa bled ' uncompetitive' workers . . . . The rise of mechanised forms of production introduced productivity standards that assumed a 'normal' ( that is to say, usually male and non-impaired) worker's body and disabled all others . Th e u ps h ot of t h is 'labour market exclusion' was 'socio-spatial margin­ alisation', whether through inca rceration, home working, or street

tradi n g . Therefore, even those disab led pe o p le who we re visible on the t h o ro u gh fare s of the Victo ria n city we re not engaged in the customary ped e s tr i a n activities of sh o p p i n g , so c i a l i z i ng or circulating. Rather, the street was 'a pla ce of subsis tenc e ' which also served as a stage t h a t ' co nsta n tly retold the story of t hei r social di fference' ( Gieeson 1 999: 33, 34, 93-6, 1 06-1 0 ) .

Towards a cultural perspective Run n i ng t h roughou t these histories of disa bi lity, which s pa n twenty years, is a common emp h a s is on the m a te r i a l implications of the econ­ omy for soc i a l and political life. Prior to the I n d u st r i a l Revol ution of the late e i g h tee n t h century, disabled peo p le were part of an undifferentiated m a s s poor, and hence c l u s te red at the l owe r reaches o f society but not excl uded from it. After i ndustrialization, new tec h no logies deba rred t hem from the w o r k - force and set in train s e gre ga to ry state p ol i c ie s implemented by professional e xpe rts . Colin Barnes has shown that dis­ crimination long p re- d ated t h i s era , fin d i n g examples in ' G ree k culture, Judaeo-Christian rel igions and E uro p e an drama and art since well before the renaissance' ( 1 996: 5 1-2 ) . However, the economic and politi c a l , as well as the c ult u ral , chronology of materialist histories is faulty. Fi rst, the d o c t r i n e of economic ra tio n ali ty w a s w i de l y u p h eld before the late eigh teent h century. 'Regularl y la b o u ri n g people a re the K i ng­ dom's greatest t rea s ure a n d st re n g t h, ' insisted the Q uaker c l ot h merchant and social thinker J o h n Bel lers in 1 7 1 4; 'for . . . if the poor la bourers did not ra i se much more food and manufacture than what d i d su b s i s t them· selves, every ge n t l e m a n must be a l a bo ur er and every idle man must starve' ( 1 98 7: 204; see al so B orsa y 1 998 ). Given s u ch espousal of the work ethic, the p re - i n d ustr i a l labour m ar k e t may not have been very

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hospitable to impaired partiCipants. Second, the impact of economic change was vari able, and the onset of factory employment was far from rapid; in 1 84 1 , for instance, only 6 per cent of the tota l labour force worked in textile plants, the one sector where mechanization was significant ( Evans 1 9 8 3 ) . Finally, the evolution of the state was complex. Though the nineteenth century did witness an expansion of collectivist legislation, the non-statutory services kept a vital role that was particu­ larly extended i n the area of disability. Yes, there were workhouses for the destitute, built under the Poor Law Amendment Act of 1 8 34 (Crowther 1 98 1 ) Yes, the state had required the erection of l u natic asy lums since 1 845 ( Scull 1 99 3 ) and mental deficiency i nstitutions since 1 9 1 3 (Thomson 1 99 8 ) . But m uch of the segregated provision for physically impaired adults and children was provided by charitable bodies which were i ncreasi ngly drawn i nto partnerships with govern­ ment ( Parker 1 96 5 ; Topliss 1 9 75 ) . Therefore, it is difficult to see the incarceration of disabled people as si mply the outcome of an oppress ive state. The assumption that industrialization ushered in a concentration of economic power in big, mechanized factories and a concentration of political power in a centralized, professionalized state is not only histor­ ically flawed. There is also a conceptual problem: the omission of a cultural d i mension. The social model from which histories of d i sabi­ l ity have been derived already stand s accused of an 'arid materialism' ( Paterson and Hughes 1 9 99: 5 9 9 ) , which rides roughshod over the multiplicity of disabled peoples' experiences ( Barnes et al. 1 999 ) . The architects of the model have pitted themselves against any conces­ sions, warning that they reduce 'explanations for cultural pheno­ mena . . . to the level of thought processes, thus detracti ng attention away from economic and social considerations' ( Barnes 1 996: 4 9 ) . In some respects, however, the polarity is exaggerated, because phenomen­ ology has ' long e mphasized the "social construction of real ity" ' , whilst cultural Marxists 'have stressed the importance of thought and imagin­ ation in the production of . . . "society" ' (Burke 1 992: 1 20 ) . What histor­ ical study requires is a conceptual framework which holds materialism and culturalism - or structure and agency - in tension. As Peter Burke has amplified: .

The current emp hasis on cultural creativity and o n culture as an active force in history needs to be accompanied by some sense of th e constraints within wh ic h that creativity operates . Rather than simply replacing the social history of c u l t u r e by the cultural history of society we need to work wi t h the two i dea s together and simultaneously, however diffic u l t this may

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be. In other words, it is most useful to see the relation between culture and society in dialectical terms, with both pa rtners at once active and passive, determining and determined. ( Bu rke 1 992: 1 23 )

In the re m ainder of this c h apte r, I attempt the endeavour that Burke outlines, ap p ly i ng a cultural concept of power to the surveilla nce pro­ cedures that charity and medicine deployed to police disabled people between the late Victoria n per i od and the o u tbrea k of World War 11.

Moral surveillance Whereas m ateria l ism envisages the state as a unitary structure, cultural­ ism frag men ts it into 'one segment o f a much broader p lay of power relations'. Not only a re professio nals and burea ucracies, leisure pursuits and cultural representations encompassed ( Ba rns et al 1 999: 8 ) , but so is a mixed economy of welfa re with inputs from the voluntary, commercial and informal sectors ( Kidd 1 999). On this scenario, social policy ceases to be a statu tor y 'tool to regu late a population from the top down' a nd becomes 'more di ffuse' ( Shore a nd Wright 1 997: 5 ). Fo ucault s concept of disc iplinary power captures this dismem be rm ent . For him, dis c ipline could not be tied to an i nstitution or an apparatus, but c o m p r i sed 'a whole set of instruments, techniques, p roce d u res, levels of a pplication, targets' ( Fouca ult 1 99 1 : 2 1 5 ) . Therefore, power penetrated the socia l body, tailoring the 'docile' subject t o modern economic a n d polit i cal demands by means of conti n uo u s survei l lance a nd m o n i to r i n g , [and] the a p pl i ca t i o n of endless rules of cond u c t, manner, attitude and appear­ ance' ( O ' Brien and Penna 1 998: 1 1 6 ) . It follows that the community is no less a site for the t r ansaction of power than the institution, and that charities a re no less conduits than the state. Charita ble activity in Britai n accelerated rapid l y from the late eight­ eenth century. The new phi l a nth ro p ic organizations were frequently p atronized by the m iddle classes, imbued with the fervour of evangelical religion and i n c rea s ingl y a ffl uent due to c o mm ercial and industrial growth . Their aim was to ensure tha t , in the aftermath of the Frenc h R e v ol ut ion a n d pol itica l radica lism at home, the poo r behaved as orderly and economically p rodu c ti v e citizens ( Borsay 1 999; Prochaska 1 98 8 ) . I n the case o f i m pai rment, the effects we re d iffe renti a l . B l i n d and de a f people, denied access to the wo rd of God, appea led to Christian sympa­ t h ies , partic ularly since new methods of teaching them to commu­ nicate offered a j ustification for schools Employment faci l ities often followed, as ex pupils struggled to find work in the o pen l a bour market .

'

'

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( Topliss 1 975 ) . Provision for physical, as opposed to sensory, i mpair­ ments, on the other hand, was slower to materi a l i ze. Some proj ects did date from the early nineteenth century. In 1 8 1 7, for example, a small General Institution for the Relief of Person s labou ring under Bodily Deformity was esta blished in B i rm ingh a m (White 1 99 7 ) . Similar insti­ tutions followed elsewhere (Cholmeley 1 98 5 ) . But despite the toll of factory accidents, and their exploitation in the campaign for legislative reform ( G ra y 1 99 6 ) , foundations for physica l l y i m paired people bur­ geoned only in the late Victorian period. The thrust behind this philanthropic impulse was 'the "soc i a l " discov­ ery of the "crippled child'", itself part of a bro ad er recon figuration of childhood in which the 'wage-earning "non-ch ild" of the la bouring poor was transformed into the economically worthless "child-scholar" ' . Therefore, between 1 8 70 and 1 9 14 - during which time state schools joined charitable and commercial schools to provide elementary educa­ tion that was free and compulsory - more than forty voluntary agencies for 'crippled' children appeared. At first, their ethos was senti menta l , as the names bring out only too clearly: the Crutch and Kindness League, the League of Hearts and Hands, the Guild of the Brave Poor Things. In 1 893, however, the Charity Organization Society (COS) published an influential report on The Epileptic and Crippled Child and Adult. Re­ nowned for a rabid bel ief in persona l responsi bility since set up in 1 867, the COS p romoted a scientific brand of philanthropy in which, through collaboration with statutory and voluntary bodies, it sought to direct charitable assistance only towards the deserving poor who were predis­ posed towards self-help. Therefore, 'crippled' children were schooled in the virtues of independence, their alleged triumph over disaster potently endorsing the flagging ideology of indivi d ua l ism ( Cooter 1 99 3 : 53-9) . The self-help menta lity was not the monopoly of the Cha r i t y O rgan­ ization Society. Dee p l y embedded in the Victorian mind-set, it was taken up at the opening of the twentieth century by a new t y pe of philanthropic organization epitomi zed by the guilds of hel p . Whereas the COS opposed much state intervention, the guilds saw themselves as p a rtne rs of govern­ ment, shaping a new civic consciousness which closed the gap between donor and recipient ( La ybourn 1 997). Their model was the German Elberfield system, in which unpaid workers administered relief a nd offered a casework service ( Lewis 1 995). In practice, however, the guilds were dom inated by middle-class members whose attitudes and methods differed little from those of the COS (Cushlow 1 99 7 ) . The Nottingham District Cripples' Guild (NDCG) - my case study for the survei llance of d isabled people - grew out of this tradition in 1 908 . We know of its existence from six surviving A nnual Reports for the years 1 9 1 4, 1 9 1 5 ,

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1 924, 1 93 9 , 1 950 / 1 , and 1 964, - all of which are lodged at the Local Studies Library in Nottingham . The piecemeal character of this evidence is typical of many organizations for and of d isabled people, whose records are far less likely than those of statutory bodies and major charities to find safe repose in local li braries and record offices (Foster and Sheppard 1 9 9 5 ), or national repositories like the Public Record Office ( http: / / www.pro.gov.uk), the British Library ( http: / / opac97. bl .uk), and the Wellcome Library for the H i story and Understanding of Medicine ( http: I / library.wel lcome.ac.uk ) . Even with few sources, how­ ever, it is possible to tease out a history of disability by situating the topic under investigation within its wider societal context. The Annual Reports for the Nottingham D istrict Cri pples' Guild show that between 1 9 1 4 and 1 964 members were offered a recreational pro­ gramme of enterta i nments and excu rsions. By the end of the period , this was all that was left. Prior to World War 11, however, the guild was at the centre of a web of voluntary and statutory organizations, which included the Charity Organization Society, the National Society for the Prevention of Cruelty to Children, the Education Com m ittee of the local authority, and the Poor Law guardians and their successors, the Public Assistance Committee ( NDCG 1 9 1 4 ) . Within this network, the guild was respon­ sible for a system of first moral and then medical surveillance. The Annual Reports for 1 9 1 4 and 1 9 1 5 split the city i nto fifteen districts. Each was serviced by a group of visitors who were headed by a 'captain': a title imported from El berfield ( Lewis 1 995: 73 ) . The visitor attached to every case was to ' be the cripple's trusted friend' and send in reports which spelt out 'any useful thing to be done' ( NDCG 1 9 1 5: 8 ) . In 1 9 1 3, the guild had adopted the COS's 'casepaper' system. Therefore, all appli­ cations were subjected to a robust scrutiny, which noted the employment record, patterns of income and expenditure, signs of thrift and recourse to poor relief ( K idd 1 99 9 ) . Requests for help were then processed by the weekly committees, whose members sought the causes of need, j udged whether satisfying it was a proper use of funds, and tried to learn systematically from their experiences (NDCG 1 9 1 4 ) . I n reaching decisions, a stringent moral discourse was imposed. Like the COS and the new philanthropy i n general, the NDCG bel ieved that charitable assistance was not suitable where sel f-help was unlikely to result (NDCG 1 9 1 4 ) . In the Annual Report for 1 9 1 5, two categories of miscreant were depicted: the u biquitous adult male unwilling to take employment and the neglectful fam i l ies o f 'crippled' children. A

bright i ntelligen t child with seriou s l y deformed feet and a ppea l i ng per­

sona lity, l i v i n g in unsa t i s factory surrou ndings a n d recei ving many pen nies,

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was m edi c a l ly exami ned. h w a s clear that a n

operation would very g reat l y improve his c on d i ti o n This the p arents o ppose d in the fi rs t i nsta nce but eventually, l a rge ly owi ng to the intervention of the I n s pec to r of the NSPCC, the operation was pe r form e d and gave every promise of success. A re t u r n from the hos p ital to the home would, it was feared, d e s troy the benefit of the treatment. Arrangements w e r e made with the E d u c at i on Autho ri ty to send the c h i l d away to a Sanatori um Sc h ool until hi s c u re had been completed. The cost was to be shared by th e Education Authorit y a nd the Guild. The c h i l d however returned h om e resumed the receipt of his pennies, his pa re n t s refused to take advantage of t h e arra n gements s u gg es t ed, d epri ve d the child of months of benefit at the sea, and seriously l e sse n ed the success of the h o spita l treatment. (NDCG 1 9 1 5 : 6 ) .

,

This vignette mani fests a refusa l t o grasp the real ities of poverty in early twentieth-century Britain (Vincent 1 99 1 ) . The diseases which 'crippled' many mem bers of the guild - rickets, tubercu losis, infantile paral ysis were associated with economic and social deprivation. Yet the causes of such hardship in inadequate wages, parsimonious social security benefits and bad housing were never confronted. Nor were parents credi ted with a reluctance to decant their children into institutions which, for all the benevolent gloss, imposed a harsh, disciplinarian regime. I nstead, dis­ abled people and their families were subjected to moral condemnation through a surveillance network funded and managed by the voluntary sector. By the mid- 1 920s, however, the casework which dispensed these j udgements was in retreat as a shift towa rds medical treatment after World War I seized the agenda (NDCG 1 924) .

Medical surveillance The hagiographic tale of medicine's progress has now been de bugged by sociologists and historians, and the celebration of great inventions, heroic doctors and benevolent institutions subdued by critical enquiry (Jordanova 1 995) . Particularly corrosive was Foucault's connection between know­ ledge and power. 'We should admit . . . that power produces knowledge,' he wrote; 'that power and knowledge directly imply one another; that there is no power relation without the correlative constitution of a field of knowledge, nor any knowledge that does not presuppose a nd consti­ tute at the same time power relations' ( 1 99 1 : 27). The medical special ity of orthopaedics, closely associated with physical impa irment at the start of the twentieth century, illustrates well the politicization of clinical knowledge. Early hospitals like the General Institution in Birmingham were largely preoccupied with deformities of the feet, and became

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ever more marginal ized a fter 1 8 50 'by the rise o f "orthopaedic surgery" . . . in general hospitals'. Simultaneously, there was a refinement of ph)'·­ siotherapeutic techniques (medical gymnastics, massage, electrotherapy, hydrotherapy) a nd the a bsorption of a holistic philosophy of diet, rest and fresh air. Nevertheless, a fatal istic attitude often prevailed. Many surgeons admitted 'to a large class of "statio nary cripples" who, as a result of congenital malformations, accidents of childbirth, i n fantile paralysis or long-standing rickets, were beyond the surgical pa le a nd were capable of help only through special educational and training facilities' (Cooter 1 99 3 : 1 8, 60). Clinical interest rallied after 1 900 primarily because of the prevalence of 'crippling' conditions thrown up by the increase in surgery at paediat­ ric hospitals. As chronically impaired children blocked beds intended fo r acute, short-term cases, a n a lternative model of long-term treatment unfolded . It was exemplified by Agnes Hunt's charitable convalescen t home at Baschurch near Oswestry in Shropshire, which, during the Edwardian period, pioneered an orthopaedic facility of intern ational renown with a programme of surgery, open-air therapy and satellite a fter-ca re cl inics. Between 1 9 14 and 1 9 1 8 World Wa r I created add ­ itional clinical opportunities. Two-thirds of all casualties suffered loco­ motor injuries; and the treatmen t of fractures, gunshot wounds and nerve lesions all fell w ithin the prov ince of orthopaedics. Furthermore, the orthopaedic hospita ls set up during the war for m i litary patients gener­ ated a new power base which their medical occupants were anxious not to lose . So, on return to civilian work, orthopaedic surgeons promoted 'an ambitious scheme to recreate the power and glory of their m i litary empire' through a national scheme for the cure of 'crippled' children. The influence of local a u thorities in medical planning made it impossi ble for the Ministry of Health to co-ordinate this scheme. Conseq uently, o rtho­ paedics turned to the charitable sector in the form of the Central Council for the Care of Cripples ( Cooter 1 993: 1 5 3; Hunt 1 924a, 1 924b, 1 924c ) The Central Council (eventua lly t h e Royal Association for Disabi l ity and Rehabil itation) was set up i n 1 9 1 9 . Whereas pre-war charities had been divided between medicine, education and wel fa re, the Central Council brought toget her representation from these different constitu­ encies. Based on the arrangements at Baschurch, the national scheme of which it became the sponsor advocated a network of centra l orthopaedic hospita ls, allied to a series of affiliated l ocal after-ca re clinics. The central orthopaedic hospita l provided the 'cri ppled' child with skilled su rgery and nursing, a good diet, education and 'the benefits of the sun and the open air . . . for as long as his physical disability demands' . The local after-care clinics supplied a ' short-cut' to accurate diagnosis and hosp ital

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admission, enabled 'the surgeon to supervise his own handiwork . . . and to rea lize the end results,' and offere d him ' a wonderful school' in which to learn 'more and more all his l i fe how best to h e l p the crippled chi ld' (Girdlestone 1 924: 3 ). The Nottingha m District Cripples' Guild was a recogn ized enth usiast for this nationa l scheme (Anderson 1 969), and in 1 923 a new honorary orthopaedic surgeon was appointed to implement the pla n. Su bsequently lauded as ' one of the pioneers of modern orthopaedic surgery ' , he played a key part in establ ishing both a central hospital and a constellation of after-care clinics ( NDCG 1 964: 6 ) . When the Harlow Wood Ortho­ paedic Hospi tal o pene d in 1 92 9 to serve Nottinghamshire and the East Midlands, the guild referred patients - more than forty a yea r by 1 939. However, its role was fundamentally recast from the mid- 1 920s on, when direct responsibility was assumed for running the first of what became six after-care clinics. At these clinics, a nd at Harlow Wood, power resided primarily in the hands of the orthopaedic surgeons. But the gui l d rein­ forced this professional control by e stablishing a visiting sub-committee of 'ladies' whose job was to remain 'in touch with patients, especially those who are inclined to stay away from the Clinic and there by risk undoing much of th e good that the Hospital or out-patient treatment was intended to do for them' (NDGC 1 939: 7). Charitable e ffort was bei ng harnessed to medical surveillance. By 1 9 36 there were forty orthopaedic hospitals in the British Isles and 400 orthopaedic clinics (An derso n 1 96 9 ) . The ir h istory demolishes any claim to an objective base for medical authority. Though the surge of interest in the 'crippled' child bore some relation to the tra jectory of clinical knowledge, it wa s a lso embroiled in a quest for professional power. Orthopaedics was a poor relation within medicine. Long-term rehabilitation did use some technology, but the bone-setting that was its main craft fell short of the scientific paradigm . Tap ping i nto contempor­ ary concerns about child welfare not only boosted the profil e of ortho­ paedics, but also unlocked charitable resources to expand the arenas of practice. Furthermore, it allowed the speciality to authenticate its expert­ ise and build a platform from which to capitalize on the exigencies of World War I. The experience gained from military casualties th e n invested the reversion to 'crippled' children wi th a credibility which underwrote the development of an orthopaedic power base where the influence of the hospital radiated into the community. Childhood impairments were decl ining during the inter-war period a s the incidence of rickets and tuberculosis fell, and orthopa edic surgeons i ncreasingly moved on to the management o f fracture cases in order to advance thei r professional ambitions (Cooter 1 9 93 ) . However, the net-

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works established with the collaboration of organizations like the Nottingham District Cripples' Guild were an important precursor of the 'survei llance medicine' which David Armstrong has dated from World War II. Though the national scheme lacked the resources to spread 'its gaze over the normal person to establish early detection . . . and enable the potentially abnormal to be adequately known' ( Armstrong 1 983: 9 ) , its supervisory aspirations exposed many disabled people to painful and intrusive medica l intervention. For by 1 923 a minute to the Board of Education supporting a proposal for a n orthopaedic hospital in Yorkshire was asserting that every disabled child required surgery (Bourke 1 996).

The politics of resistance The medicalization of physical impairment propelled by the national scheme was legitimated by recourse to economic rationality. As a repre­ sentative of the Board of Education argued in 1 920, the proper treatment of 'child c ripples' was a 'sound investment' , because it meant that 'thou­ sands . . . who would otherwise grow up to be a burden on their relatives and the community will become useful, sel f-supporting citizens' ( Girdle­ stone 1 924: 2 1 ) . This mission to rescue disabled people from idleness had eugenic undertones. Physical impairment was not necessari l y v iewed with the biological determinism of Darwin, but the impediments to reform were stressed in a way which resonated with the social evolution­ ism of Spencer ( Freeden 1 979; Harris 1 995) . Therefore, supporters of the nationa l scheme warned that though slum clearance removed 'crippled' children from insanitary envi ronments that bred disease, a new house did not ' bestow a new sense of the responsi bil ities of parenthood or civic life'. The ' malign influence of alcohol' was likewise unaffected (Watson 1 930: 8 0-4) . Long hospital stays protected against the 'defective' family who not only undermined the prescribed post-operative care but a lso inculcated financial dependency. And, by acquiring the functional ability to work, 'crippled' ch ildren were released from degeneracy and tooled for the full citizenship that was conditional upon economic activity ( Parker 1 998 ) . This connotation of impai rment implies a profound d i sablism in British society, which undercuts the politics of resistance. Foucault was adamant that 'we can never be ensnared by power; we can a lways modify its grip' ( 1 9 8 8 : 1 23 ) . However, the idea that recipients, perceived in eugenic terms, might resist assistance was a l ien to most early twentieth­ century service providers; so, when cl ients - like those of the Nottingham District Cripples' Guild - forfeited help rather than knuckle down to the

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terms attac hed , the i r actions we re co n s t r u ed as delinquent ( NDGC, 1 9 1 5 ) . The e xp res s io n of c on s u m e r opinion was a lso re n der ed red undant by the w i de s p r ead assumption that the benevolent and the pr o fess io n al knew best. In t h e first issue of th e Cripples ' Journal, for insta nce, the e d i to r claimed that its appeal was ' pri ma r i ly . . . to a l l institutions, m ed ical men, nursing staffs and helpers' (Watson 1 924) . No reference was made to the p a t i e nt s whom we m i gh t deduce from the ti de were its

audience. There were signs of this co nve n i e n t elision in the m ed i c a l re presenta­ ti on of the or t hopae d i c h o s p i t al as a ha ppy, s u p po rt i v e envi ronment for disabled children : As o ne approaches such a hospital one becomes aware of i t s presence by eye and by ea r - an a t tra c ti ve sight and a most cheerful sou n d . One secs wards open to sun a nd wind, one hea rs happy shouts a nd l a u g h ter. Gaiety and fun seem to be d i stilled unendingly out of the children. (Gird lestone 1 924: 30)

Few accounts of thi s hospitalization survive from pa t i e n t s ' sta ndpoints. However, we know from the 'me m o r i e s ' recorded i n Mau rice White's pop ula r h istory of the Royal O r t hopa edi c Hospi ta l in Bi rm i n g h a m that children we re su b j ec t ed to repe ated surgica l interventions o v er many y ear s . Mr N . H. Field, for e xa mple, re ca l led how he was a d m i tted at th e age of t hree with s pi n a l TB and immobilized on a s pi nal fra me for si x years. S i m i l a rl y, Bobby James was admi tte d in 1 92 8 with 'very serious deformities to both his legs'; only a few m o nt h s old, he was to spend ten years 'on and o ff ' in the h o s p i t a l, where he un d e rw e n t sixteen operati ons (White 1 997: 1 96-7, 205 ) . Whilst neither Mr F i e ld nor Bobby j a me s c om p l a i n e d about t h e treat­ m e n t which t he y recei ved, the st ud y was a celebration of a revered local institution which was unl i kely to elicit critical co m m en t. Conve rsely, Out of Sight - the Ch annel 4 d oc um enta ry on the e xperi e nc e of d i sa bili t y i n the first hal f o f the twentieth c e n t u ry - po r tra yed harrowing personal testimonies to e xc r uc i a t i n g surgery and har sh regimes in the institutions which acc om m o d a ted 'crippled' children. Ta ke Bill Elvy, born in 1 9 1 8 with ' severely deformed hands and feet which p re v en ted him from walking'. Admitte d to an institution for 'crippled' children, he was periodically dispa t ched to hosp i t a l for surgery. They operated on me when I was still very youn g . It was so frightening. I n and out o f h osp i ta l all the t i m e I was. You c ould n 't have any visitors and a n y w ay my parents couldn't afford to come 'cos the hospital was in London . I used to have to live in the Sha ftesbury Home to get rea dy for

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them doing ope ra t i o n s on me. But you got no real care there even tho u g h they m ust h a v e k nown how bad the opera tions we re and how much pain I was in. They were meant to prepare me, b u i ld me strength u p k i n d of th i n g for caning m e off for the next operation on me h a n d s or me feet. But it was very ha rs h . You m ore than likely got a c l ou t round the ear or a wallop ra t h e r than caring. It was l i k e prison to us kids. All our letters were censored, in and o u t . You were there t o do your chores, h a rd graft and try and keep your head down a s fa r as I cou l d see. Then the ho sp i ta l would ring and say, 'Right, let's have him i n fo r a nother op. ' And off I'd be sent for some more torture at t he hospital. (Humphries and Gordon 1 9 92: 80-1 )

Though this story, and the others in the col lection, cannot be specifically bound to orthopaedic hospitals under the national scheme, they do cast doubt on the benign i mage of medical ization and l ong-term care . Even under such extreme circumstances there were acts of resistance: strikes against bad food or excessive punishment, raids on the kitchen or the orchard to supplement meagre diets, bids to escape ( Humphries and Gordon 1 992: 80-1 ) . Bur if d isabled people were able to show defiance, the structures within which they exercised that power were ultimate ly co n st r ai n i n g . Instituti onal practices were not overturned as a result of thei r child i n m ate s rebelling. Consequently, power was structured rather than free-floating, because, despite having some scope for resistance, all individuals and all social groups were not e q uall y a b le to e xert their influence .

Identity and history In examining the transition from moral to medica l surveillance, and the ca pacity of disabled people to resist, I have discarded the notion of a unitary state and teased out the dispersal of power through charity and medici ne. The construction of identity is also swayed by this decentring. The social model of disability locates personal identity in the concrete experiences of discri mination. Critics of a cultural bent have pressed for the re i n st a te m e nt of an individual dimension which acknowledges that pain, fatigue, de p res s io n and 'internalised oppression' may accompany impairment (Marks 1 99 9 : 25-6 ; see a lso Barnes and Mercer 1 996). D ismissive of calls for the incl usion of social class, gender, ethnicity and age, this group refutes the re levance of structural characteristics. Iden­ tities, fluid through a n ongoing process of e n gagem e n t with a rapidly cha nging worl d ( Sa rup 1 99 6 ) , have to be reflexi ve l y fa bricated by 'sus­ taining . . . coherent, yet co nti nuo u sl y revised, biogra ph ical narratives'. As Anthony G iddens has elaborated :

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Because of the 'openness' of social life today, the plura l i zation of con te x ts of action and diversity of 'authorities', l i fe - st y l e choice is increasingly

important in the constitution of self-identity and daily activity_ Reflexively organized life-planning, which nor m al l y presumes consideration of risks as filtered th rough contact with expert knowledge, becomes a central feature of structuring self-identity_ ( G iddens 1 99 1 : 5 )

Disa bled people's material disadvantages discredit the wholesale rejec­ tion of structural factors. Poverty excl udes many from the prosperity which is essential for ' l ife-style choice', whilst the consumption of social policies inflicts professional control and damaging assumptions about dependency, which any e xpression of resistance may only partially alle­ viate (Hughes 2000; Marks 1 9 9 9 ) . Therefore, it is impo rtant to mine a lternative reserves for positive identity. The disabled people 's movement is confident that di rect political action will not only win policy changes, but a lso empower its participants and erode their negative self-images. The Disability Arts Movement has also attacked offensive and demeaning stereotypes in the media ( Ba rnes et al. 1 999). However, since ide ntities a re rooted in the past as we l l as the present, knowing where we have been helps us to know where we are and where we are going (Jenkins 1 99 1 ; S a ru p 1 996 ) . As a result, histories of disa bility are another, complementary route to individual and collective esteem. Whilst memory is a key factor in structuring fixed identities, it assumes greater significa nce when these become more transitory. With reminiscence, often used as a therapy for elderly people, persona l narra­ tives occupy a private space of little relevance beyond the settings in which they are told . History, on the other hand, offers a public space for reflexive interaction with the pa st, having proved its worth as part of a 'pedagogica l political culture' which hel ps individuals a nd social groups to comprehend their 'place in local, national and international rea lities' (Sarup 1 993: 1 86-7). D isa bled people's testimonies have a n important role to play in this process. Of course, there is a risk that these narratives are privileged over other accounts and regarded as 'the truth . . . [rather than) inevitably partial' . Furthermore , their ' "confessional" stance may function as a form of self-subjugation, affirming a fixed "disa bled" identity' that either represents all disabled people as ' "triumphing over adversity" or . . . as . . . pathologica l objects available for voyeuristic gaze' (Marks 1 999: 1 8 3 ) . None the less, these stories - rich in detail and telling i n their condemnation of past practices - may be liberating for those whose self-esteem has been battered by discrimination. In the words of one former inmate of a mental deficiency institution: 'I'd just like people to

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know so they can realize what it was we'd had to go through . It's not j ust what was written down! They did it just to keep us locked up, so that people would think we're mental' ( Fido and Potts 1 997: 45 ) . Placing such experiences within a wider historical context, and search­ ing for their antecedents i n previous centuries, increases their potency by supplying the story, or 'chain of events', with a 'discourse' or 'plot' that explicates what has happened ( Sarup 1 996: 1 7 ) . Far from being a nostal­ gic q uest for a cosy, comforting past, histories that com bine i ntellectual rigour with the revelation of exploitation have the potential to raise persona l and political consciousness. First, they may undermine the passive, tragic, medical assumptions of the individual model and shift the burden of responsibility to the economic, social and political organ­ ization of society. Second, they may demonstrate that attitudes and policies towa rds disability a re culturally constructed, and hence open to change. Third, they may reach disabled people - for example, those with learning difficu lties or the impairments of old age - who are not currently active in the disability movement. And fina lly, as the record of l abour history and women's history testifies, they may encourage the inclusive­ ness necessary for effective political action, breaking down the artific i a l divisions between different types o f impairment ( Barnes et a l . 1 999; Tosh 1 9 9 1 ) . In these ways, an awareness of disabi l ity in the past n urtures m ore positive individual and collective identities.

Conclusion This chapter has been organized around four main themes. First, I traced the neglect of the past in disability studies to incompati bilities between sociology and h istory. Second, the materialist histories developed i n the social sciences have been evaluated from a cultural perspective. Thi rd, a case study of moral and medical surveillance has been used to show that though power operates outside the unitary state, resistan ce is constra ined by structu ra l forces which artic ulate the work ethic. And, finally, history's most valuable contri bution to d i sability studies has been seen as the encouragement of a critical reflexivity to feed personal and political identities. Con fronting the past is no panacea. Though we might hope to lea rn from at least i ts worst mistakes, hi story never repeats itself exactly, so there a re few problems today for which blueprint solutions can be extracted (Tosh 1 99 1 ) . Nor is historical research - l i ke social research ( Oliver 1 9 96) - necessa rily emancipatory for t hose who conduct and consume it. But if undertaken w ith a sensitivity to­ wards the pe rspectives of disa bled people, and if critica l l y orientated

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towards the institutions of able-bodied society, history is c ap a bl e of enhancing individual and col lecti ve consciousness . As Young and Quibell conclude for intellectual impairment in the twentieth century : 'When one can intertwine th[e) sense of a h istor ic a l story with the autobiographies of rea l people, deeper and broader understanding becomes possible' (2000: 759 ) . REFERENCES Ande rson, J. 1 969: A R e co rd of Fifty Years Service to the Disabled by the Ce n tral Council fo r the Disabled. London: Central Council for the Disabled. Armstrong, D. 1 9 8 3 : Political Anatomy of the Body: Medical K n owledge in Britain in the Twentieth Century. Cambridge: Ca m b r idge U n i v e rsit y P re s s . Barnes, C . 1 996: Th e o r i e s of disabi lity and the o r i gi n s of the oppression of disabled people in Western society. In L. Barton ( e d . ) , Disability and Society: Emerging Issues and lnsights. Lo nd on : Longman, 43-60. Barnes, C. and M e rc e r G. (eds) 1 996: Exp lo ring the Divide: Illness and Disabil­ ity. Leeds: Disa bility Press. Barnes, C., Mercer, G. and Shakespea re, T. 1 999: Exploring D isa bili ty: A Socio logical Introduction. Cambridge: Polity. Barns, 1., Dudley, ]., Harris, P. and Petersen, A. 1 999: Introduction: themes, context and perspectives. In A. Petersen, I. B ar ns, ]. Dudley and P. H a rr i s, Poststructuralism, Citizenship and Social Policy. London: Ro ut l e dge 1 -24. Bellers, ]. 1 987: An essay towa rds the i m p ro vement of physic k . ln G. Clarkc {ed.), John Bellers: His Life, Times and Writings . Lon don: R o ut l e d g e & Kega n Pa ul, 1 74-220. Bentley, M. 1 99 9 : Modern Historiography: An In troduc tion . London : Rout­ ledge. Borsay, A. 1 998: Returning patients to the commun ity: disability, medici ne and economic rationality before the Industrial Revolut ion . D isa b i lity and Society. 1 3 ( 5 ) , 645-63. Borsay, A. 1 999: Medicine and Charity i n Georgian Bath : A Social Hist ory of the ,

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Bou rke , J. 1 9 9 6 : Dismembering the Male: Men 's B odies, B rita in and the Great War. Lon d on : Reaktion Books. B u r k e, P. 1 992: History and Social Theory. Cam brid ge : Polity. Burrow, J. W. 1 966: Evolution and Society: A Study in Victorian So cia l Th eo ry. Cam bri dge : Cambridge University Press. Cholmeley, J . A. 1 985: History• of the R oya l National Orthopaedic Hospital. London: Chapman and Hal l . Cooter, R . 1 9 93 : Surgery a nd Society i n Peace and War: Orthopaedics and the Organization of Modern Medicine 1 880- 1 948. Basingstoke: Macmillan. Crowther, A. 1 9 8 1 : The Workhouse System 1 834-1 92 9: The History of an English Social Institution. London: Methuen.

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Evans, E. J. 1 9 8 3 : The Forging of the Modern State: Early Industrial Brita in 1 783-1 870. London: Longman. Fido, R. and Potts, M . 1 997: Using oral h istories. In D. Atkinson, M. jackson and J. Walmsley (eds ), Fo rgotten Lives: Exploring the History of L earning Disabil­ it)'. Kidderminster: British Institute of Learning Disabilities, 34- 46. Finkelstein, V. 1 9 8 0 : Attitudes and Disabled People. New York: World Reha bili­ tation Fund. Foster, J . and Sheppard, j. 1 9 95: B ritish Archives: A Guide to A rchive Resources in the U1zited Kingdo m . 3rd edn. Basingstoke: Macmillan. Foucault, M. 1 98 8 : Power and sex. In M. D . Kritzmann, (ed.), Politics, Philoso­ phy, Culture. London: Routledge. Foucault, M. 1 99 1 : Discipline and Punish: The Birth of th e Prison. Harmonds­ worth : Penguin (originally published in 1 977, Alan Sheridan) . Freeden, M . 1 9 79: Eugenics a n d progressive thought: a study in ideological affinity. Historical journal. 22 ( 3 ) , 645-7 1 . Giddens, A . 1 984: The Constitution of Society: Outline of the Theory of Stru c­ turation. Cambridge: Polity. Giddens, A. 1 99 1 : Modernity and Self-Identity: Self and Society in the Late Modern Age . Cambridge: Pol ity. Girdlestone, G. R. 1 924: The Ca re and Cure of Cripp le d Children. Bristol and London: John Wright and Si mpkin Marshal!. Gleeson, B. 1 999: Geographies o f D isability. London: Routledge. Gray, R. 1 996: The Fa cto ry Question and Industrial E nglan d 1 83 0-1 860. Cambridge: Cambridge University Press. Hamrnond, J. L. and Hammond, B. 1 934: The Bleak Age. West Drayton: Pen­ gum. Harris, J. 1 9 9 5 : Between civic virtue and social Darwinism: the concept of the residuum. In D. Englander and R . O'Day (eds), Retrieved Riches: Socia l Investigation in B ritain 1 840-1 9 1 4 . Aldershot: Scolar Press, 67-8 7. Hughes, B. 2000: Medicine and the aesthetic invalidation of disabled people. Disability and So c ie ty 15 ( 4 ) , 5 5 5-6 8 . Humphries, S. and Gordon, P. 1 9 92: Out o f Sight: The Experience o f Disability 1 900-1 950. Plymouth: Northcote House. Hunt, A. G. 1 924a : Baschurch and a fter: 1 . The birth of a pioneer hospital . .

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Scull, A. 1 993: The Most Solitary of Afflictions: Madness and Society in Britain 1 700-1 900. New Haven: Yale University Press. Shore, C. and Wright, S. 1 997: Po l ic y : a new field of anthropology. In C. S hore and S. Wright (eds ), Anthropology of Policy: Critical Perspectives on Govern­ ance and Power, London: R o u t ledge 3-3 9. Thomas, K. 1 966: The tools and the job. Times Literary Supplement, 275-6. ,

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Thompson, E . 1 963: The Making of the English Wo rk ing Class. Harmonds­ worth: Pengu in. Thomson, M. 1 99 8 : The Problem o f Mental Deficiency: Eugenics, Democracy, mzd Social Po licy in Britain c . l 8 70- 1 95 9 . Oxford: Clarendon Press. Topliss, E. 1 97 5 : Provision for the Disabled. Oxford and London: Basil Blackwell and Martin Robertson. Tosh, J. 1 99 1 : The Pursuit of History: Aims, Methods and New Directions in the Study of Modern History. London: Longman. Traill, H . D. and Mann, ]. S. 1 8 95: Social England. London : Cassell. Trevelyan, G. M. 1 9 73: English Social History. London: Longman. Vincent, D . 1 9 9 1 : Poor Citizens: The State and the Poor in Twentieth Century Britain. London: Longman. \X'arren, J . 1 99 8 : The Past and Its Presenters: An Introduction to Issues in Historiography. London: Hodder & Stoughton . Watson, F. 1 924: The g is t of the m atter. Cripp les Journal. 1 ( 1 ), editoria l . Watson, F. 1 930: Ci�·ili<.ation and the Cripple. London: John Ba le. White, M . 1 9 9 7 : Years o f Caring: The R oyal O rthopaedic Hospital. Studley: Brewin Books . Wilson, A. 1 993 : A critical portrait of social history. In A. Wilson (ed.), Rethink­ ing Social History: English Society 1 5 70-1 920 and its Interpretation. Man· chester: Manchester University Press, 9-5 8 . Young, D . A. a n d Quibell, R . 2000: Why rights a re never enough: rights, intel­ lectual disability and u nderstanding. Disability and Society, 15 ( 5 ), 747-64. '

7 Work, Disability, Disabled People and European Social Theory

Paul

A bberley

Introduction In this chapter I consider how two forms of classic soc i a l theory, one ge nerally classified as conservative, the other as radical, understand the rel a tionship between work and social inclusion. I argue that, despite their differences, they converge insofa r as they both imply the inevit­ ability of the social exclusion of some impaired people i n any possible society. I indicate where other k inds of social theory, partic ularly certai n approaches within feminism, can provide a vision of a more inclusive society in which work is not regarded as the defin i ng cha racter­ istic of ful l socia l i nclusion . The practical i m pl ication of such a view is the a dvocacy of a dua l strategy, of work facilitation for those who want it and can meaningfully take part in the labour process and the general valorization of non-working li v e s for those, including impaired people, who a re unable to work. To achieve this, it is necessary to relate to the rea l changes occurring in E uropean soc i a l a n d economic life. I f we are to look at d isabi lity a s a form o f oppression, we need to dev e lop views of what a society would need to be like for impaired people not to be disa bled, in order to develop effective policies to combat social exclusion. And this requires social theory, since, if we are to un d erstan d how we might overcome social exclusion, we must have some ideas about what it is that brings a bout social inc l u sion.

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Disability and the discourse of citizenship The notion of citizenship i s frequently employed today at both national and European levels to deal with issues related to the social status of disabled people . 'The language of citizenship continues to lie at the heart of New Labour's project and in particular its proposals for welfa re reform' (Dean 1 999: 2 1 3 ) . Equally, the European Commission has pro­ posed the declaration of the year 2003 a s the European Yea r of Disabled Citizens, with the objective of 'strengthening the concept of citizenship for people with disabilities' ( Eu ropea n Commission 2000). Thus the concept of the enhancement of citizenship is used to focus on the social exclusion of disabled people from the mainstream of European social l i fe. Although ostensi bly a purely descriptive term, the idea of social exclu­ sion is theoretically laden, in that it seems to imply a ma jority who a re ' included' in a relatively unproblematic manner and a problem minority whose 'outsiderness' can be remedied by what are essentially minor social adjustments. The term is thus essentially related to a sociological perspective which characteri zes society as a su bstantive or potential unity, as proposed by for example Durkheim, rather than the fundamen­ tally conflictual and contradictory entity posited by a mongst others, Marx. Indeed, Silver ( 1 994) argues that the origins of European Union ( EU) discussion of social exclusion lie in the French, and by extension Durkheimian, concern primarily with moral and cultural integration, rather than the economic activity that in Durkheim's idealist social theory is presented as a mechanism for bringing about the former, ultim­ ately desira ble end (Durkhei m 1 964). Hav ing said this, it is still useful to point out that the antithesis between exclusion and i nclusion constitutes a relevant terra in even for those of us for whom the perspective it implies appears to be fundamentally mistaken a bout the nature of societies in general. In particular, the attempt by some writers to construct a debate based upon a n antithesis between excl usion and citizensh i p - 'soc ial exclusion may. . . . be seen a s the den i a l ( or non- rea l isation ) of the civil, political and social rights of c itizens h ip' ( Walker and Walker 1 997: 8 ) - would seem to locate discussion in a usefu l framework for disabled people. It is thus proba bly not excessi ve to make the claim that citizenship can be regarded as 'one of the central organising features of Western political discou rse ' (Hindess 1 9 93 : 1 9 ) , and thus a notion that disabil ity theory must repeat­ edly address.

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To talk of a 'discourse' is to say more than that new words are heing used to convey old ideas. Rather, it means that a set of i nterrelated concepts are being employed to try to unde rsta nd the social world and ultimately to govern paths of action which seem to be open to us . A discourse both opens up and closes down possibilities for action; it constitutes ways of acting in the world at the same time as it posits a descripti on of it. 'Discou rse' draws attention to the language of politics, not simply as a way of expressing its content, but as the very substance of it. I n its idealist form the term is used to imply that language is everything, and that 'materia l ' relations are the mere epiphenomenal product of discourse. In its more plausi ble, less sel f-obsessed usage, the notion of discourse points to the fact that the concepts through which we both understa nd and act in and upon the world affect these actions and thus the world itself, whi lst still maintaining the materi a l ity of the world and of social relations. Dwyer argues that notions of citizenship can 'provide a bench-mark against which it is possible to assess the status of certain ind ividuals or groups in relation to access to the agreed rights and resources that are general l y available to all those who are regarded as citizens . . . also . . . the levels and causes of inequality within a society' ( Dwyer 2000 : 3 ). In addition to this sociological aspect, as a political focus, citizenship is very much about relationships between individuals, groups, rights, d uties and state institutions; it is about relative degrees of incorpor­ ation and empowerment . . . effective citizenship . . . means bei ng incl uded in the systems of rights and welfa re prov i sions that a re mediated or man­ aged by state agencies, and having one's needs met through m a i nstream pol itical intermedi a tion. (Harrison 1 995: 20-1 )

Such discourses, crossing academic boundaries between the self-styled 'purely' descriptive and the political, a re clearly of relevance to disa bled people's struggle to reconceptualize and transform our situati on. Levitas, in her study of social exclusion a nd New Labour, m a kes a useful distinction between three ideal types of discourse of social excl usion: a redistributionist discourse (RED) developed in British critical social

policy, whose prime concern is with poverty; a mora l underclass discourse ( MUD) which centres on the moral and behavioural delinquency of the

excluded themselves; and a social i ntegrationist d iscourse ( SID ) whose centra l focus is on paid work. ( Levitas 1 99 8 : 7)

Each of these perspectives contains its own p rescriptions for combating social excl usion - in particular, SID's emphasis on exclusion from paid work leads its proponents away from a broader view of social participa-

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tion, and towards a concentration o n 'work' as definitional o f social mem bership. Thus a SID-type European Commission document, whilst ostensi bl y a imed at promoting the social integration of disabled people, looks o n l y at training and help in entering the labour market; and on the 'key issue of im proved access to means of transport and p u b l i c buildings', states that the Commission should 'press for the adoption of the pro­ posed Di rective on the travel conditions of workers with motor disabil­ ities' (European Commission 1 994 : 5 1 -2 ) . Since this document starts with a focu s on employment, this partiality is not surprising in itself; but it does indicate some consequences of a work-based focus for the citizenshi p of disabled people in Europe as a whole. That this is also the case in the specific conditions of the UK is evidenced by a consideration of the first five years of the Disability Discrimination Act ( DDA) undertaken by the Roya l National Institute for the Blind. The complexity a n d exorbitant cost of bringing cases in the county court for discrimination in the provision of goods services, facil ities and premises makes it virtually impossible for disabled people to enforce their rights i n these areas, concl udes The Price of Justice ( Royal National Institute for the Blind 2000 ) . Since the DDA came into force in 1 996, more than 5,000 cases claiming discrimination at work have been taken to employme nt tribunals. In contrast, the RNIB knows of only twenty-five cases claiming discrimination in the p rovision of goods, services and facilities. Since there is no evidence that disabled people face more discrimi nation at work than in the rest of their lives, the report attributes the disparity to the different ways that parts of the DDA are enforced . Em ployment cases go to e m ployment tribunals, where it costs noth ing to bring a cla im a nd the risks of having costs awarded against an a p p l i ca n t are negligible. In contrast, claims agai nst a shop m anager for v e r bally a busing a disabled person, or a company for fa i l ing to p r oduce hills in Bra i l le, would have to go through the county courts, an often compl icated, costl y process which is said by the RNIB to put most people off at the first hurdle. Thus the adoption of a SID perspective by the state serves to define what is 'significant' discrimination, whose combating i t will fac i l itate, and what, by implication, i s of less i mportance . A recen t study ( Burchardt 2000) suggests that one in six of those in work who become disabled loses his or her job within twelve months. The r e sea rc h also i ndicates that disabled people fi nd i t hard holding on to a new job: one in three of those who get work i s out of i t again within a year, compared to one in five non-disa bled people. The fi ndings indicate that while we are sup­ posedly surrounded by inc reasingly positive images o f disabled people, like publicity surrounding British performe r s i n the Pa ralympics and the ,

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Paul A bberley

government's awareness campaign a imed at d isa bled people capable of and wanting to work, they are still significantly disadva ntaged . About 60 per cent of disa bled people of working age do not have a j o b . ' "Disabled people make up half of a l l those who a re not employed but would like to work and one third of those who a re available to start in a fortnight" says the study' ( Burchardt 2000: 1 3- 1 4 ) . Depend ing on how disability is defined, disabled people a re currently calculated to make up 1 2- 1 6 per cent of the working age population. The proportion is growi ng, with 3 per· cent of those in work reporting each year that they have become 'limited in daily activities', and half of them reporting a continuing im­ pai rment twelve months later. The report, based on analysis of o fficial data, also shows that d isa bled people remain relatively poor despite social security changes since 1 985: 'earnings differentials between disabled and non-disabled workers, con­ tro l ling for di fferences i n a ge, education and occupation, have increased. The disability "penalty" appears to be growing.' ( Burcha rdt 2000: 1 4). Hal f of all disabled people live on incomes of less than half the national average, a level commonly taken to represent the poverty line. Of dis­ abled adults with children, 60 per cent fall below this bench-mark. Burchardt says that benefit rules need to be made more flexible to help disabled people stay in work if they have fluctuating medical conditions. And benefit l evels need to be reviewed to help those who a re un­ e mp loyed, who have non-working partners, or who have retired early. Those with more severe impairments are slipping behind th e rest of the

population, and will continue to do so while the benefits that make up a high proportion of their family income are up- rated only in line with inflation. Unless the link between national prosperity and benefit income is restored, the standards of living of those who have few opportunities for paid work will cont i nue to diverge from those who are in employment. ( Burchardt 2000: 5 3 )

Functionalism and disability What are the pre-conditions of social inclusio n ? The classical conserva­ tive viewpoint in social theory is e mbodied in the work of the founding father of functionalist sociology Emile Durkheim ( 1 964 ). He posi ts a fundamental distinction between non- or pre-industrial societies and industrial ones. In the former social integration is characterized as based on the similarity of roles in the social division of labour, 'mechan­ ical' solidarity. A fter industrialization, with a growing separateness and distinction o f the individual from the group as the division of la bour is

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i n c rea s i ngl y speci al i z ed and i ndividuated, a good society is one w ith s t rong bonds of 'organic' sol i d a r i t y. These b o n ds are constituted throu gh the recognition of the role of others i n the complex division of labour that m ak es up that society. The venue where thi s solidarit y is to be forged is the occu pa t i o n al associations. Thus, to be deprived of such a role is to be deprived of the poss i bility of full societal mem be rsh i p . Whi lst s ome of his po le m ical writing, like the e ssa y 'Individualism and the i ntellectuals' ( Durkheim 1 97 1 ) , w rit ten as an intervention in the Dreyfus Affair, p laces great stress upon the necessity for the good s oc i ety to recogn i z e diversity, there is no s uggestion that this extends to the incorporation of those u nable to work into society. Foll ow i ng this v iew, the modern English s oc iolog i st Ed a Topliss came in 1 982 to advance the following argument for the i n evit a bi l it y of dis­ crimination a g ai n s t disabled people:

While the particular type or degree of impairment whic h disables a person for fu ll participation in society may change, it is inevitable that there will always be a l ine , somewhat indefinite but none the less real , between the able-bodied majority and a disabled minority whose interests are given less sal ience in the activities of society as a whole. Similarly the values which underpin society must be those which su pport the interests and a cti v i ties of the ma j ority, hence the emphasis on vigorous independence and competitive achievement, particularly in the occupa­ tional sphere, with the unfortunate spin-off that it e ncourages a stigmatis­ ing and negative view of the disabilities which handicap individuals in these valued aspects of l i fe. Because of the centrality of such values in the formation of citizens of the type needed to sust a i n the social arrangements desired by the a ble-bodied majority, they will continue to be fostered by fam1ly upbringing, education and public esteem. By contrast, d i sablement which handicaps an individual in these a reas will contin ue to be negatively valued, thus tending towards the imputation o f general inferiority to the disabled individual, or stigmatisation. (Topliss 1 9 82: 1 1 1 - 1 2)

For Topliss the inevita ble d i sad v a n tage of disabled people, in any pos­ sible society, stems from our genera l inabilit y to meet standards of perfor m an ce in work. T h is can be c o m pa red to other perspecti v es l i ke interactionism, w h e re writers (e.g., Haber and Sm i th 1 97 1 ) draw a similar conclusion, hut s u ggest that the core 'deficiency' of disabled people is an a esthetic one. However, aesthetic j u dgements may the m ­ selves he re lated, a l beit in a complex manner, to t he requirements of production, so it seems unlikely t h at the aesthetic e x pla n a t ion , however attractive it may be i n ce r t a i n cases, possesses the irreduc i b i l ity that its proponents ascri be to it.

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Paul A bberley The historical construction of disability

Topliss's analysis points to an importa n t truth about the social exclusion of disabled people t o day : that it is intimately related to our exclu­ sion from the world of w o rk . And it seems fair to contrast this to pre­ industrial societies, which , for all their negative features, 'did not p re c l ude the great majority of di sabl ed people from partici pating in the p ro d uction process, and even where they could not partici pate fully, they were still a ble to make a contri bution. In this era disa bled pe o p l e w e re regar d e d as indi v idually un fo rtun a t e and not seg r egated from the rest of society' (Oiiver 1 990: 27). Indeed, certa i n important occ upations like shoemaking and repair seem to have had a disproportionately large number of disa b led practitioners, as disabled people or their relatives who could afford to do so b ought in to suitably se denta ry occupations. Now this is not the w h o l e picture, and there are c le a r l y many salient differences be t w een feudal societies and our own, and this m a ke s disabi l ­ ity to d a y a very d ifferent t hi ng from disability in the past ( Gieeson 1 999; Bredberg 1 99 9 ) . H istor i c al l y, then , disab i lity can be u n de rst oo d as a changing social experience arising from the specific ways i n wh i c h society or gan i zes its fundamental activities like work transport, leisure , educa­ tion and domestic life as they relate to the im p a i r ed individua l ; so d i sab i l i ty differs not only between historical eras but also within eras and between societies. It i s a bove all a relationship, between impaired peo p le and society. It fo l lo w s that changes i n society as a whole, which may not be directed at d i s a ble d peo p le at all, can have profound impli­ cations for d i sabi lity. This certainly seems to have been what ha pp e n ed in Brita i n in the nineteenth century, as the j uggernaut of industri alization c ru s h e d all p re vi o u s social a rrangements that resisted its p r og r ess i o n . To exam i ne this, I turn to what is often regarded as the po l ar opposite of c onserv a ti v e social theory, Marxism .

Marxism, industrialization and impairment In The Condition of the Working Class in E11gland, written in 1 844 / 5, Enge l s argues that the Industrial Revolution created the proletaria t in a g iganti c process of c o n c en t ration, pol a r i zation and urbanization, and wi th it, despite expansion of the whole economy and an increased demand for labour, a 'surplus population', wh ich Marxists were later to refe r to as the 'reserve arm y of l a bour'. He was concerned to explore the conditions of l i fe and the collective and individual behaviour that this

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p roce s s pro du c e d, and the greater part of the book is devo te d to the de s c r i p t i o n and analysis of these ma te ri a l conditi ons. His a cco unt is ba se d on fi r st- h a n d observations, informants a n d pr inted evidence, such as c om mis s i o n reports and contemporary jo u rn a ls and p e r i o d ic al s . ' Cr ip p l es ' are cited as evidence of i n j u r i o u s working practices: 'The Commissioners men t i on a c ro w d of cripples who a ppe a red before them, who clearly owed their di st o rt i o n to the long-working ho u r s '

( E n ge l s 1 969: 1 8 0 ) . He cites the e viden ce of a nu m be r of docto rs who ma l fo r m a t io n and defo r mi ty t o wo r k i n g prac­ tices, as an 'aspect of t he phy s i o l o gic a l resu l t s o f t he fa c tory s y stem ' ( Engels 1 969: 1 8 1 ) He continues: 'I have seldom tra v e r se d Manchester without me e ti n g three or four of them, s u ffe ri n g from p rec i sel y the same d i s to r tio n s of the s p i n a l columns and l egs as that described . . . It is evident, at a gl a n c e, whence the di st o rti ons of these cri pples come; t he y a l l look e xact ly a li ke ' ( Engels 1 969: 1 82 ) . He continues for some pages to relate partic u l a r fo r m s of i m p ai rm e n t to fa c to ry work ing conditions, and to condemn 'a s t a te o f t h i ngs which pe r mits so many d e fo rm i t i e s and m u t i l a t io n s for the be n efi t of a s i ng le class, and p l un ges so many i n d u st r i ­ ous worki ng-people i n t o want and starvation by re aso n of inj u r i es under­ gone in the se r v i c e and through the fa u l t of the bo u rge o i si e ' ( Engels 1 969: 1 94 ) . He c on cl u d e s his d esc r i p t ion of 'the Engl i s h manufacturing p role ta ri at ' thus: 'In all directions, w h i t h ers o e v er we may t urn , we fi n d want and disease permanent or temporary . . . slow but s u r e undermining, and final destruction of the human be i n g physically as well as m e n t a l l y ' ( Eng e l s 1 969: 2 3 8 ) . A hundred y e a r s later Wal Hann ington, leader o f the Une m p l o yed Workers Movement, used a similar an a ly s i s and so u rce s of evidence, this time to condemn not fac t o ry work, but the lack of it: 'These youths . . . meet pro blem s which render them i n c re a s ing l y conscious of t h e way in which the i r l ives have been st u n ted and t h e ir young hopes f r us t ra te d and of the results of the phy s ic a l impairment which they have suffered t h r ough the u n emp l oy men t and poverty of their parents' ( Han­ n i ngto n 1 93 7: 78 ) . Doyal ( 1 9 7 9 ) refin e d this general thesis, and docu­ me nt ed a rel a ti o n s h ip between 'capital i sm' a n d impairment on a w i d e variety of fronts , adding consumption, industrial p o l l u ti o n , stress and i mp e r i a l i sm to the labour-centred c o nc e rn s of E n ge l s a n d Ha nn i n gt o n . Now I i n no way wish to d i sp u t e the g e n e r al accuracy and pertinence of these s t u d ies . My poi n t i s rather that such an a n a ly si s , l i n k i n g i m p a i r­ ment to ca p i ta l i s m as a very ap p a re n t symptom of its inhuman ity and irrational i ty, is of l i tt le use i n the s t ru g g l e a g a i ns t the disablement of impai re d peop le . A l l i t i m plies i s that the number of i m p a i r e d pe o p l e is se en as dec l i n i ng in a soc iety p rogressively a bol i sh i n� the i n j u rious relate par ti c u l a r kinds of

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consequences of prod uction for profit. But there are two cruc ia l objec­ tions to the notion of the problem of disability ending up in the dustbin of history. F i r st, . whi lst socially produced impairments of the kind outlined by Doyal and others may decrease in number, it is inconceivable that the rate of impai rment should ever be reduced to zero. Secondly, and of significance for disa bled people today, it is an issue whether such a situation, even could it occur, wo ul d be desirable. If Marxist analyses are exclusively concerned with the prevention and cure of impairment, this emphasis is no accidenta l conseq uence of the marginality of disabled people to Marxism's primary concern with pro­ d u c t ion relations under ca pitalism; rather, it is deeply grounded in Marx­ ist notions of humanity as intrinsically involving labour (Abberley 1 996 ). But, in addition to this, it may also be that important elements o f social inclusion may be overlooke d in theoretical perspectives w h ich place excessive emphasis upon ensuring material wel l-bei ng.

Respect What soc i a l utopias that a i m at eliminating deprivation often fail to deal with are assaults on human dignity: 'social utopias are oriented predomin­ antly toward the elimi nation of human misery, natural law predominantly t owards the elimination of human degradation' ( Bioch 1 98 6 : 234 ) . De­ grading or i nsulting behavi o u r is injurious because it restricts people in t h ei r p ositi v e app r a i s a l of self, depriving them of what Hegel c alled 'rec­ ognition', and what Otis Redding and Aretha Franklin have sung of as ' respect' . Honneth ( 1 995a, 1 9 9 5 b ) argues that social struggles motivated by the experience of being denied conditions for i dentity formation which he ca lls 'disrespect' - establish necessa ry conditions for se lf­ realization as an autonomous individual . His accounts of self-confidence , self-respect and self-esteem involve dynamic processes whereby individ­ uals come to experience themselves in certain ways, ways that necessarily involve recognition from others. They are thus inter-subjective a n d ultim­ ately social processes, which are not an abstract property, but an emergent, developing result o f the experience of others' attitudes to the su bject. Whereas Thompson ( 1 96 3 ) and Barrington Moo re ( 1 978 ) had previ­ ously argued that motives for revolt and resistance can be identified in the destruction of t r ad i tiona l ways of life, Honneth wants to argue that such motivation can also occur when established ways of li v i ng have become intolerable. It may be the case that the experience of disempowering 'care', and the threat of the institution being offered as a 'promise' in the golden age of welfare, allows disabled people as a group for the first

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Disability

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time to identify ' respect', rather than physical survival , as a collective objective. The viola tion of self-confidence, sel f-respect and self-esteem can be see n as provi d i ng the pre-theoretical basis for socia l critique, and once it becomes clear that these a re experiences shared by many others, the potential emerges for col lecti ve action aimed at e xpanding soc i a l patterns of recogn ition . The importance of the establishment of a pre-theoretical expe rience of oppression is that i t esta blishes a basis for theories of oppression, independent of the intellectuals who formulate the m . Oppression is t h u s seen a s an objective condition 'exposed' b y theory, not a purely intell ectual con struct arising solely out of 'oppression' di sco u rse. Thi s leads to the debates engendered by the Anglophone adoptions of a variety of elements from the work of Fouca ult. For Fouca uldians o f a p hilosoph ical idealist turn, the notion of pre-theorized oppression is a fundamenta l l y incoherent one; n othing can exist prior to discourse 'about' it, which is seen as, in truth , giving rise to it. It may be that such notions hold a pa rticular appeal in relation to the theorizing of learning d i fficulty, or of deafness. Others, however, may find i t useful to take from Foucault a notion of power, more s u btle and more supple than the traditiona l hierarch ical structure found in the work of Weberi a n orga nization theori sts, and t ry to a pply this to developing a sense of the m u ltiple levels at which the rel ations between impaired people and those they interact with con struct the web o f disa blement. I have argued in an exploratory analysis of the discourse of occupational therapists ( Abberley 1 9 9 5 ) that the deve lop­ ment of mec h a n isms to meet the 'obvious' need for the work of 'profes­ sionals' to be eval uated is itse l f sufficient to give rise to a work process tha t disempowers cl ients. There is, I think, considerable benefit to be gai ned from a Foucauld ian emphasis on h ow and where power circulates in our understa nding of the process of disa blement. For Hon neth, 'trust i n onese l f' involves the capacity to express needs and desi res without fear of being abandoned as a res ult. For his general theory, it is usua l l y only when extreme experiences of physical violation, such a s rape or torture , occ ur that one's a b i lity to free ly identify and express one's needs without anxiety is t hrown into question. But i n the a utobiographies of disabled people we repeatedly encounter i n st a nces of such fu nda mental experiences of insecurity prod uced by medica l , reh a b i l ita tive, fa m i l y or genera l public i nteractions. Thi s notion of bodi ly i ntegrity, Honneth a rgues, ca ptures someth i ng that cuts ac ross historica l a n d cultural d i fferences to a fa r greate r degree than do the two other elements of respect and esteem, which are essenti a l l y h istorical a rtefacts .

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Self-respect is a bout viewing oneself as entitled to the same status and treatment as anyone else, and is organized in terms of lega l rights. This aspect has changed historically, and Honneth i ndicates a change in both the proportion of the population who have been regarded as full citizens a nd the content of citizen rights, particularly political and wel fare rights which indicate what capacities and opportunities must be present for the exercise of legal capacities to be feasible . Self-respect, t hen, is constituted through interactive experiences which legitimate claims to citizenship. Finally, self-esteem addresses what it is that makes the i ndividual special, unique, different and of value. There must therefore be something posi­ tive in this aspect of i dentity, something 'valuable' . Honneth disputes Mead's claim that individua lity involves what 'we do better than others' ( Mead 1 9 34: 205), si nce modern divisions of labour and eva luations of non-productive roles gi ve rise to a socially produced hierarchy ranging from esteem to insignificance. Rather, he claims that a good society is one i n which common va lues would match the concerns of individuals in such a way that no member would be denied the possibility to earn esteem for her or his contribution - 'to the extent to which every member of a society is i n a position to esteem himself or herself, one can speak of a state of societal solidarity' (Honneth 1 995b: 1 29 ) .

Work and disability theory today Claus Offe, among others, has suggested that the cha nging patterns of work with i n Europe suggest the need for social policy in the EU as a whole to break from work- based entitlement to a citizenship entit lement of basic income or social dividend (Offe 2000) . Yet both the British governmen t a nd European programmes put entry to the work-force at the core of their strategies to combat social exclusion. Research ( Lunt and Thornton 1 9 94) has surveyed some of the issues i nvolved in implementing employment policies in te rms of a social model of disablement. Direct discrimination and lack of suitable educational and training opportun ities have been and continue to b e a barrier. Just as importantly, the structure of employment has implications for d i sabled people. Jobs designed around the capacity, stamina and resources of the average worker, nine-to-five, five day a week employment, which have been termed 'j ob-shaped jobs', a re incompatible with the needs of a wide variety of citizens. This first became apparent in relation to women, but is equall y relevant to disabled people, whatever their gender. In Great Britain unemployment is at a twenty-year low ( a t the time of writing),

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but it i s d u bi o us that thi s is the result of more long-term job-shaped jobs. With a cc e l e ra ting technological change and the globalization of markets, for the less skilled, future prospects of stable em p l o y m e nt look bleak, whereas for those p ossessi ng qualifications three or four career cha nges in forty years do not seem unlikely. Both these tendencies make the prospects of inclusion in the permanent labour force, and consequent citizenshi p status, more problematic for disabled people. As techno­ logic a l advances and increased globalization combine to make perma n ­ ent full-time employment an i ncrea sin gl y rare phenomenon for the majority of the work-force, disa bled people will con tin u e to be in the forefront of those groups who cannot provide the versatility and work rates demanded by the labour market. Beyond this, though, is an underlying pro b le m : even in a s ociety which did m a ke profound, genuine a ttempts, well supporte d by financial pro v i­ sion , to integrate impaired people into the world of work, some would be excluded. Whatever efforts are made, some will not be capable of produ­ cing goods or se rv ices of social value - that is, 'participating in the creation o f social wealth'. This is so because in any society, certain, though v a ry i ng , prod u cts are of value and others are not, reg ardless of the effort that goes into their prod uct i o n . To explore the po s si b le nature of the s ituation o f disabled people i n E u rope in the future, it is necessary to locate the possibil ities of disabil ity practice and policy i n the co n te xt of future developments in social and economic tendencies at present only nascent. In particular, there are two significant trends i n the analysis o f work. The first foresees a dramatic decline in demand for labour as a result of technologica l advances. Thus Bauman writes: For t he first t i me in h u m a n history, the poor, so to speak have lost their uses. They a re not the vehicles of s o c i a l repentance and salvation; they are not the hewers of wood and d rawers of wa te r, who feed and defend; t he y are not the 'reserve army of la bour', no r the flesh and bones of military power either; and most certainly they are not the consumers who w i l l provide t h e effective 'market c l ea ri ng ' demand a n d s t a rt up rec overy. The new poor are fully and tru l y useless a nd red undant, an d thus become bu rdensome 'others' who have outstayed their we l co m e . socia l

( 1 997: 4-5 )

Rifkin ( 1 9 95 ) and Forr este r ( 1 99 9 ) si m i l a r ly e nv isa ge th e rapid erosion of any need for surplus l a bour other than that which the g lobal economy can supply cheaply, ready tr aine d and without social rights fro m beyond n ationa l and continental bounda ries. On a nother view, w ith its basis i n the analysis o f demographic trends, the rati o o f e m pl o yed to reti red

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requires migrant la b o ur to support the n on - pro d uctive and maintain, even at a c onst r ain e d level, the welfa re state . In ne ithe r case are the mass of disa bled pe o p l e likely to fig u re in the list of req ui rements, since, even as consumers, the y a re not l i kely to gen e ra te a l arge ma rket. Thi s point proba bly requires a d istinction between poor disa bled people and the m inority of p e nsio n - r ich 'normal age impaired' people whose needs wil l increa si ng l y lead to the expansion of th e Saga hol ida y I m obi l ity aid I sta irl ift market and concomitant p e r sonal services. One of the more w ide ra ng i ng and detai led of these analyses can be found in the work of Ulrich Beck. In his rece n t book ( 2000 ) he argue s that th e work soc i e ty is irrevocably gone, and t ha t sources of i den t i t y w i l l i n future reside in the 'self-active civil soc i et y ' characteristic of 'second mode r n i ty

­

-

'.

The nature of the welfare state The expa ns i on of welfare states in the post-World Wa r 11 per i o d was an o u tcome of the stren gth of the wo r ki ng class , w h ic h forc ed the b o ur ge o i s ie to provid e services, resources and interventions . H o w ev er, the fact that the b ourgeoisi e rema i ned, and remains, the dom i na n t class should be looked to for an expl anation of why these services, in addition to be i ng useful, have at the same time a cont r ol l ing function. The dual fu nc tion of the welfare state, which takes pla ce within a set of c l as s ( and ot h e r ) forces continuous ly in struggle, co n si s t s in services pro v i d e d with an inextricably dominating c h a r acte r and function . Th i s appl ies ac r oss the whole range of welfare pr ov i s i o n , but v a ries in relation to the relative sectional powers of consumers, provide rs and the overa rc hi n g class rela­ tions. This is not a conse qu e nc e of any class or soc ial group 'lying'; rather, it res u l t s from the dominant group s vision of rea lity b ein g pre­ sented as u n i v ersa l and valid for all groups. What hap p ens is not, though, the s imp l e outcome of what the ruling cl ass wants - the d om i nan c e of the state takes place within a set of power relationships of which the bo ur ge oi s ie is on ly one pl a ye r, a l beit at p resent the dominant o ne The nature of welfare is t h e outcome of a stru ggle which t ak es place between classes and other social groups in a situation of power relations dominated by the bourgeoisie. We l fare is a social relation in contradiction, not an i nst ru ment that can be split into d ifferent parts. Thus contention over the frontier of control, in relation to welfare as much as to production, has a historical ly tran s formati ve effect, even though it does not address the relations which co n sti t ute the most profound determinants of t he social formati on . Scientific knowledge is itsel f produced a nd reproduced no t in the a bs t ract, b ut through activities that em body power relations, ­

'

­

.

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though this is not to imply that knowledge does not have a certain autonomy. But this autonomy exis ts with i n a set of power relations that determine not only hO\'v k nowledge is used, but what and how knowledge is produced.

Feminist analyses and social status One area where the analysis of oppression has become rich enough to deal with this i ssue is feminist theory. Femi nists have pointed out that Marxism is deeply marked by the maleness of its origi nators - and never more so than in the key role assumed by work in the constitution of human social identity. It is argued that the apparent gender neutrality of Marxist theoretical categories is i n rea l ity a gender bias which legiti mizes Marxism's excessive focus on the ' masculine sphere' of commodity pro­ duction. Whilst some approaches in feminist sociology have reproduced the concern with work as definitional of social inclusion (Abberley 1 996), others have more profoundly disputed labour-dependent concep· tions of humanity. Lister's work on feminism and citizenship ( 1 997) is identified by Faw­ cett (2000 ) as developing a viewpoint which recognizes that the notion does not need to have an identical and homogeneous meaning for all members of society. Fawcett praises Lister for highlighti n g gendered assumptions and formulating a reappropriation of citizenship that ac­ knowledges the effects of structural constraint on women whilst at the same time emphasizing individual agency. Viewing c itizenship as a dy­ namic process, Lister is seen as developing an approach which does not involve a hierarchical framework, but rather looks to both universal i sm and diversity. Lister argues for a concept of citizenship as differentiated universalism 'which embodies the creative tension between universalism a n d particularity or di fference' ( Lister 1 997: 1 97 ) . However, whilst her theoretical formulations place 'work' a s only one aspect of citizenship qualification, the proposal that 'policy needs to create the conditions i n which t he citizen the earner I carer and carer I earner - can flourish' ( Lister 1 997: 20 1 ) seems to be more involved with the redefin i tion of 'work' than that of the conditions of citizenship. Whi lst enhancing the social status of the not inconsiderable number of disabled people who a re also care rs, such a formulation does nothing to benefit those who do not partici pate in this now expanded category. However, this move of Lister's is not a simple advocacy of the equation of 'care work' with 'work-shaped work'. Rather, she cites the work of Tronto ( 1 993 ), who both de ge n de r s the n otion of care a nd makes it -

-

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'both a mora l value and a p ol itic a l basis for the pol i ti c a l achievement of a good soci et y ' ( 1 9 9 3 : 9 ) . Such a world , ' w here the da i l y caring o f p eople for each other is a valued p re m ise of human existence' ( Lister 1 997: p. x), is to be distin­ gu i shed from the ' comp u lso ry al truism' ( Land a nd Rose 1 9 8 5 ) which d eprives both care-givers and rec i pie n t s of choices as to how needs are met and reinforc es en forc e d de pendence . This d et r act s from the citizen­ ship of both care-givers and care-recipients. L i ster points out that in the p u b lic sphere 'the obstacles to wo m e n 's citizenship . . . a re to be found in the labour m ar k et , the ( welfare) state and the polis' ( L i ste r 1 9 97: 202 ). This diagnosi s is eq u ally appli c a b le to major aspects o f the determin a nts of the soci a l st a tu s of disa b led people, female or m a l e . Equally e x te n da b le to some d i sa b led people is the conclus ion th a t ' the strengthenin g of . . . labour market position is important a l so for . . . social citi z en s h ip ri gh ts ' ( L ister 1 997: 202 ) . Indeed, it may be t hat for all d isabled people , the improved labour m arket position of some visibly disabled peo p lt:: may be a d vantage ous , i f the status-enhancing e ffect s of improved st at u s of o t he rs 'rubs off' on us all. But the opposi te effect can equally occ ur, and as more d isabled people become 'work-normalized', those who a re not m a y find their exclusion, isolation and st i g m a ti za tio n e xacerbated. An i ncl usion which is dependent u p on employmenr is by no means a d v a ntageo u s to all disabled peop l e, since it is not l ikely in m od ern labour m arkets that all disabled peo p le could find or rel i a bl y reta in employment. Those d i sabled peop l e further from the ideal type of the 'normal' worker will remain socially excluded on the SID model, whilst those o f us w h ose cap a cit i e s to confo r m decline with advancing i mp a i r me nt and c hang in g demands of labour markets will find exclusion c reeping up on us at an accelerated p a ce . It is thus probabl y more in our i n tere s t s to pursue a nd emphas i ze the aspects of citizenship less tied to economic function. But I s u spect that we cannot concern ourselves with econo m ics only with regard to specific financial compensations for the extra costs of di sa bl e m ent either on an individual ( disable d living allowance ) or collective ( c ost of m aking p u bl i c places accessible) basis . Such m ea s ures, however well they are carried out , w i l l not produce a wor l d in which we h ave e qu a l it y of earning power.

Conclusion The theoreti c a l perspectives I have considered a bove seem to me to imply an important d istinction between disablement and other fo rm s of op­ p r e ss i on . Whi lst the latter involve steps in which freedom can possi bly be

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seen a s c om i n g through full integration into the world of work, for impai red people the overcoming of disablement, whilst immensely lib­ erative, would still leave an uneradicated residue of disadvantage in relation to power over the material world. This in turn restricts our a bility to be full y integrated into the world of work in any possible society. One implication that can be drawn from this, which finds most support i n classical sociol og i c al perspectives, with their emphasis on the role of work in social me m be r shi p , is that it would be undesi rable to be an i mpai red pe rso n in any p o s si b l e society, and thus that the abolition of disablement also i n vo l ves as far as po s si b le the a bolition of i mpairment. The dominant strand o f both nationa l and European policy on the social inclusion of disabled people stresses the sign ifi ca nc e of i ncorporation in the glo bal, flexi ble labour force . Th i s work-based model of social mem bership and identity is integral l y linked to the p reventi o n I cure ­ orientated perspecti ve of a l l o pathi c medicine and to the spe ci fi c i nstru­ mental logic of gene t i c engineering, a bortion and euthanasia. Ultimately it involves a value-j udgement upon the undesira bi l ity of impaired modes of being. However, this logic allows for the i ntegration of perhaps a substantial proportion of any existing impaired population into the work proc ess , but only in so far as there is a happ y conjunction between an individua l 's impairment, technology and s ocially valued activity. Thus the abolition of an in d i v idual 's disablem ent is ultimately de pe nden t upon, and subordinate to, the l ogic of productivity. An alte r na t iv e kind of theory can be seen as o ffe ri ng another future in so fa r as it rejects work as crucia l ly definitiona l of social m e m be rs hip and is sce p ti c al about some of the progressive i m perati ves implicit in modern science . This is by no means to deny that the o ri gins of our oppression, even for those with jobs , lie in our h i st o ri c a l exclu sion as a group from access to work; nor is it to oppose c ampa i gns for increasing access to employment. It is, how e ver, to point out that a consistently li berative analysis of disablement today must recognize that fu l l integration of impaired people in s ocial production can never constitute the future to which all disabled people can aspire. If we must lo ok elsewhere than to a paradise of labour for the concrete utopia that informs the deve lopment of theories of o u r oppression, it i s not on the ba sis of classical analyses of social l a bour that our thi n k ing will be further dev eloped. Rather, it in­ volves a break with such anal yses, and a n explicit recogni tion that the aspi rations and demands of disa b l e d people involv e the de v el o pment of values and ideas which ru n profoundly counter to the domi nant cultural problematic of both left and right . This is not a matter of choice, but of the future survival of alternative, i m paired modes of being. One p r a ctica l implication of th i s view is to ca ution a ga i nst the ov er-ent husiastic espousa l

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of work- based program mes for ov erco m i ng the exc l u s i o n of disabled pe ople w hich leave w e lfa r e systems u n cha n ged o r, worse sti l l , depleted. They m ust be m a i nta i n ed, enhanced and above all democratized if d i s ­ abled people as a whole are to e xper i e n ce any degree of e mancipation . At a more general level, systems of basic i nc om e ( Offe 2000 ) , u n c onnec te d to i ndi v idua l labour, in addition to rea listic comp e n sa t o r y benefits on the model of the British mobility allowances, would seem to al l ow for fuller social integration for disabled people in the context of the likely co m ing world of work ( Beck 2000). I am th us arguing that w e need to d eve l o p the oreti cal perspec ti v e s that exp ress the s tan dp o i nt of disabled people, whose i n teres t s are not necessarily served b y the standpoints of other social groups, dominant or themselves oppressed, of which d i s able d people are also members. Such sociol ogy involves the e mp ow e r m e nt of disabled people because k nowledge is itsel f an aspect of power. Di s a bled people have inhabited a cultural, political and i ntellectual world from whose makins they have been excluded, and in which th e y have been relevant only as p robl e ms. Scientific knowl ed ge, i nc lud i ng socio l ogy, has been used to rei n fo rce and j usti fy this exclusion. The new sociology of disablement needs to cha l l en ge this 'obj ectivity' and ' truth ', and replace it with knowledge that arises from the position of the oppressed a nd seeks to un d e rs t and t ha t oppress i on. It re q ui r es an intimate involvement with the real hist orical movement of disabled people if it is to be of use. Equally, such d e v elop m e nts ha ve si gn ific a nce for the mainstream of social th e o ry, in that they p rov i de a testing gro u n d for the ade quacy of theoretical perspectives that cl a im to account for the experiences of all a society's members .

REFERENCES

Abberley, P. 1 995: D isabling ideology in health and we lfare - the case of occupa­ tional t h e ra p y. Disability and Society 10 (2), 22 1 -32. Ab berle y, P. 1 996: Work, utopia and impairment. In L. Barwn (ed. ) Disability and Society: Emerging Issues and Insights. London, Longman, 6 1 -79. Barrington Moo re, J. 1 978: Iniustice: The Social Bases of Obedience and Revolt. New York: M. E. Sharpe. Bauman, Z. 1 997: No way back to bliss: how to cope with the restless chaos of modernity. Times Literary Supplement, 24 January. Beck, U. 2000: The Brave New World of Work . Cambridge: Polity. Bloch, E. 1 9 86: Natural Law and Human Dignity. Cambridge, MA: MIT Press. Bre dberg, E. 1 999: Writing disability history: problems, perspectives and so urc e s .

Disability and Society,

1 4 (2 ), 1 8 9-202 .

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2000: Enduring E co n o m ic Exclusion - Disabled People, Income York: Joseph Rowntree Foundation. Dean, H . 1 999: Citizenship. In M . Powell (ed . ) , New Labour, New Welfare State? The 'Third Way ' in British Social Policy, Bristol: Policy Press, 2 1 3-3 3 . Doyal, L. 1 9 79: The Political Economy of Health. London: Pluto Press. Durkheim, E. 1 964: The Division of Labour in Society. Glencoe, IL: Free Press. Durkheim, E. 1 97 1 : Individualism and the intellectuals, tr. S. and J. Lukes. Political Studies, 1 7, 1 4-30. Dwyer, P. 2000: Welfare Rights a nd Responsibilities: Contesting Social Citizen­ ship, Bristol: Policy Press. Engels, F. 1 96 9 1 1 844/5 ) : The Condition of the Work ing Cla s s in England. St Albans: Granada Publishing. European Commission 1 994: E u ropean Social Poli cy: A \Vay Forward for the Urrion . Brussels: European Commission. European Commission 2000: Towards a barrier free Europe for people with disabilities. 1 2 May COM ( 2000 ) 2 84 final, Brussels, European Commission. Fawcett, B. 2000: Feminist Pe rsp ec tives on D isab ility. Harlow : Prentice-Hall. Forrester, V. 1 999: The Economic Horror. Cambridge: Pol ity. Gleeson, B. 1 99 9 : Geographies of Disability. London: Routledge. Ha ber, L. and Smith, T. 1 97 1 : Disability and deviance. American Soc io logica l R eview, 36, 8 2-95 . Hannington, W. 1 93 7: The Problem of the Dis tressed Areas. London: Gollancz / Left Book Cl ub. Harrison, M. L . 1 995: Housing, 'Race ', Social Policy and Empowerment. Alder­ shot: Avebury Press. Hindess, B. 1 993: Citizenship in the modern west. In B. Turner ( e d . ) , Citizensh ip and Social R ights, London: Sage. Honneth, A. 1 995a: The Fragmented World of the Social: Essays in Social and Political Philosophy. Al bany, N Y: SUNY Press. Honneth, A. 1 99 5 b : The S t ruggle for Recognition - The Moral Grammar of Social Conflicts. Cambridge: Pol ity. Land, H. and Rose, H. 1 98 5 : Compulsory altruism for some or an altruistic society for all ? In P. Bean, J. Ferris and D. Whynes (eds), In Defense of Welfare, London: Tavistock . Levitas, R. 1 998: The Inclusive Society? Social Exclusion a n d New Labour. London: Macmillan. Lister, R. 1 9 9 7 : Citizenship: Feminist Perspectives. New York: New York Univer­ sity Press. Lunt, N. and Thornton, P. 1 9 94: Disability and employment: towards an under­ standing of discourse and pol icy. Disabili ty and Society, 9 ( 2 ) 223-3 8 . Mead, G . H . 1 93 4 : M ind, Self and Society from the Standpoint o f a Social Behat•iourist. Chicago: University of Chicago Press. Offe, C. 20 00: Pathways from here. Boston Revie w, October / November. O l iver, M. 1 9 90 : The P olit ics of Disablement. London: Macmillan. Rifkin, J. 1 995: Th e E n d of Work . New York: Putnam.

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Royal National Institute for the Blind 2000: The Price of ] 11 s t t ce. London: RNIB. Si lver, H. 1 994: Soc i a l exclusion and social sol ida rity: three paradigms. Inter­

national Labour

Review, 1 3 3

( 5-6) 1 3 3-63 .

Thompson, E . P. 1 96 3 : The Making of the English Working Class. Lo n d on : Gollancz. Topliss, E. 1 9 82: Social Responses to Handicap. London: Longma n . Tronto, J . 1 993: Moral Boundaries. New York: Routledge. Walker, A. and Walker, C. ( eds) 1 997: Britain Dit,ided: The Growth of Exclusion in the 1 980s and 1 9 90s. London: Child Poverty Action Group.

8 Shooting for the Moon: Politics and Disability at the Beginning of the Twenty-First Century

Phi/ Lee

Introduction Most of the writing a bout disabil ity and politics h a s been generated by activists within or around the disabil ity movement itself, b roadly conceived. I will suggest that these writings tend - understanda bly per­ haps - toward a rather 'romanticized' view of the relationshi p between these two concepts. Recent developments in state policy - nota bly the Disabi l i ty Discrimination Act ( D DA) of 1 995 and the introduction of the D isability Rights Commission in 2000 have revealed considera ble disagreements amongst disabled activists about how closely involved they should be with such developments. I will suggest that certai n para­ doxes face the British disability movement, and that these have to be comprehended in realpolitik terms . It is insufficient to claim simply that civil rights for disa bled people will only be real i zed by continuous radical struggle outside the arena of the state's apparati ( see Barnes et a l . 1 996: 1 1 5 ) . The centra l i ssue is over which issues and through which strategies ( how) such struggles should take p lace - in and around the state. There is evidence that such strategic thinking is taking place, but it is underdevel­ oped. Whilst the present conjuncture appea rs to be most unfavoura ble for disabled people to make significant pol itical gains, there are a number of rea l potential opportunities if a n effective pol itics of coa lition can be built. -

1 40

Phi/ Lee The constituency of 'the disabled'

A key issue when attempting to p olitic a l ly mobil ize any group is under­ standing their precise nature and numbers. Just who are 'the d isa bled' and how, and who, might best advance, and define, their interests ? We will see below j ust how pertinent these questions a re . On w hom , and concerning what issues, should the demands of the movement be based ? The Disability Rights Commission's Disability Briefing ( N ovember 2000) Labour Force Survey, drawing on the government's Labour Force Survey ( Summer 2000 ), indicates that there are over 6 . 6 million d isa bled people of working age - 20 per ce n t of the working age p opulation. Yet, as Barnes et al. observe , many people of w orking age ' defined as "dis­ abled" in national surveys . . . do not see themselves in this way, and even fewer actively engage in politica l activities with the disabled people's movement' ( 1 999: 1 74 ) . Moreover, in 1 99 1 there were j ust over 1 0 million people i n Britain over the age of 60. A t the beginning of the new millennium people over 85 years old make up about 1 1 per cent of the elderly population. The social needs, due to i ncrea s i ng inca pa c ity, of this growing and disparate group are vast (see Zarb 1 993 ) . l t i s instructive t o note also that the disa bi l ity movement recognizes that it has ' been relatively unsuccessful in rea c hing out to the disabled population as a whole' (Barnes et al. 1 9 99: 1 79 ) . Significa ntly, the movement has been dominated, a nd fuelled, by the successes achieved for a very particular constituenc y, notably ' those with physical and sensory impairments, who are both relatively active and relatively young' ( Barnes at al. 1 9 99: 1 79 ) . This fact has had considerable impact on the present structure of British disability politics. It is also not mischievous to acknowledge that able-bodied people do not readily think much a bout disability, other than, o f course, when members of their own families are affected . Taylor·Gooby ( 1 98 5 ) has argued, more generally, that the electorate will support only those wel­ fare policies that they perceive to be in their own ' felt' interests. The able­ bodied may be forc ed to think a bout 'disability' by television charity programmes, or 'accidental' meeti ngs with disabled people in shops or wherever. In these instances, though, their gaze will be one of the charit­ able impulse. We will all die, but we do not like to think much about the fact. The majority of the able-bodied will, equal ly, get fra i ler, and become - dis-abled. We are all in this sense 'tabs' ( see Rae 1 9 8 9 for the first usage of this term ) only temporarily a ble-bodied. Disabil ity, like death though, is something we do not care to think about too much - in '

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contemporary argot 'we do not want to go there'. This fact, too, has significant effects on the present structure of British disabil ity pol itics.

The present p olitical conjuncture Less than twenty years ago, m a n y of us l ived through the maelstrom that was Thatcherism ! Yet, electora lly the political party that delivered those enormous transformations to our body politic a nd social structu re appears now to be, for all practicable p urposes, unelectable . Thatcherism had a very clear, a nd well-documented strategy ( Ha l l a nd Jacques 1 9 8 9 ) , to shift the terrai n o f British politics considerably t o the right. Many commentators on the left perceive the present New Labour government as a product - prisoner? - o f that earl ier period . For Hal l, the Blair project, in its a ssumptions and overal l goa ls, is sti ll 'essentially framed by, and mov i ng on terrain esta blished by Thatcherism' ( 1 9 9 8 : 1 4 ) . Whatever else, New Labour politics are dominated b y style - a form of hyper-politics, in which politics is exclu si vely preoccupied with itself. Politics reduced to the language - or sou nd bite - of politics ( for a most i nsightful discussion , see Fai rc lough 2000 ) . There is little of an intellec­ tual project marked out by New La bour. Certai n measu res are, on occasion, described as influenced by communitarianism and I or ethical socialism . If any overarching intellectu a l description is employed, it i s that o f the Thi rd Way ( Bla ir 1 9 98; Giddens 1 99 8 , 2000, 2002 ) - a l ­ legedly a new pol itical project carefu lly picking its way between the untrammel led excesses of the private market and the dead hand of state control . It is difficult not to have sympathy with Hall's severe judgements on the Third Way - he l ight-heartedly quotes Francis Wheen's w ry observa­ tion in his Guardian column - about it occupying some 'vacant space between the Fourth d imension and the Second Coming' ( Hall 1 998 : 1 0). On a more serious note, it is difficult to detect real intellectual suste n ­ ance, or the seeds o f a convincing pol itical strategy in Giddens's o r any other New Labour s upporter's writings ( see Mouffe 1 99 8 ; Rustin 1 999; Westergaard 1 99 9 ) . To paraphrase Giddens's contri butions ( 1 9 9 8 , 2000, 2002 ), perhaps overly cynically, we live in a globa l marketplace - this is a fact of life - and the principal pol itical task must be to adapt society and its members to the n eeds of this global economy. There is, a s with New Labour generally, some genuine concern with 'social e xclusion' - noti ng that it is not simply econom ic factors that relegate some groups to the margins of society. There is no mention of disabilities in any of this. I n

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fact, we might add that there is very little writing a bout disabilities in any mainstream commentaries on recent political developments, or within the discourses of sociology. Hall appears correct also in noting that New La bour's principal audi­ ence appears to be a mythologized 'Middle England' - 'a profoundly traditionalist and backward looking cultural investment' (Hall 1 998: 1 3 ) . He goes on to a rgue that: [T]he framing strategy of New Labour's economic repertoire remains essen­ tially the neo-liberal one: the de-regulation of markets, the wholesa l e refash­ ioning of the pu blic sector by the New Ma nagerialism, the continued privatisation of public assets, low taxation, breaking the 'inhibitions' to market flexibility, institutionalising the culture of private provision and personal risk, and privileging in its moral discourse the values of self­ sufficiency, competitiveness and entrepreneurial dynamism. (Hall 1 99 !l : 1 1 )

Not a particularly pleasin g prospect, but there are, nevertheless, this author wants to stress, 'spaces' for political gains ( see Mulgan 1 998). They are, of course, limited, and their successful realization will require detailed comprehension of the political terrain, alongside carefully designed and orchestrated strategies and campaigns. The maj ority of the electorate, meanwhile, appear to remain disen­ gaged from active politics - busy trying to be enterprising subj ects, standing, as much as possible, on their own two feet . Above a l l , wise 'consumers' - in the retail parks and on matters of their own welfa re j udging 'what they can spend now' with less and less concern for the public sphere and the idea of a common c itizenship. Some aspects of the disabil ity movement's trajectory could be construed to gel with this notably, the emphasis on ownership and choice in benefits and on getting disabled people into work . New Labour continues to strenuously 'buy into' the idea that direct taxation should remain static, however much social exclusion apparently requires tackling. It is undoubtedly true, as Oliver and Barnes ( 1 99 8 ) have a rgued, that the costs o f excluding disa bled people from the work-force a re consider­ able. The Treasury could make significant savings i n benefits by i ntrodu­ cing policies that accommodate disabled people's employment needs within the work-place. Equally, though, activists need to recognize, in my opinion, that any important political advances for disa bled people will require significant costs to ' business', notably w ith significant re­ structuring of work environments - see below. Money saved by the Treasury will not automatically be passed to employers. Such advances will also require a significant sea change in British political culture, involving, among other things, fundamental shifts in the mind-set of

Shooting for the Moon 143 the electorate. For that mind-set t o b e shifted, campaigns must tap into existing possi bilities . It is worth reflecting, for example, on one of the products of the new post-Thatcherite, consumption-orientated culture: the growing number of television and newspaper advertisements that focus on private 'risks', particularly in the sphere of pensions, health and life insurance. The undoubted retreat of British public welfare - with its assumption of collective response to risk ( see Taylor-Gooby 2000) might superficially induce deep pessimism into welfare activists con­ cerned with extending public provision a n d civi l rights for disabled people. Yet these advertisements are undoubtedly designed to puncture the complacency - i ndeed, the a bove-noted amnesia - the genera l public may feel towards thei r own frailty - bringing them face to face with their 'tab' status. In this sense, there may be real, if somewhat i ronic, oppor­ tunities for political advancement. Before we leave this brief overview o f the conj u ncture, it would be most remiss not to note that disability issues, as conceptualized by the disability movement, were not very salient in the l ast genera l election. This fact was discussed most perceptively on a recent Radio Four pro­ gramme Sunday Best - Why People Hate Prejudice against Disability ( August 200 1 ) . We also need to recognize what Barnes et al. ( 1 999: 1 54-5 ) have documented : the actual and potential exclusions of many disabled people from participation in the electoral process.

The politicization of disability - a new social movement ? Within such a conj u ncture it is hardly surprising that the broadly defined left have found much comfort in the progressive efforts of groups other than the traditiona l ly defined, male trade union-led worki ng class, and considerable energy has been spent on analysing the nature of so-called new social movements (NSMs ) . For many progressive intellectuals the 'crisis of Marxism' in the 1 98 0s was a 'watershed' - a symbolic confirm­ ation that the European working class had compromised its revolution­ ary potential by allowing itself to be eo-opted into the management of welfare capitalism. These developments provoked a search for alterna­ tive 'agencies' of 'revolutionary change' . Of pa rticular note were the women's movement, the anti-nuclear movement and the green move­ ment. Some of this material smacks of considerable optimism - romanti­ cism ? By romantic ism I mea n a n overly optimistic assessment o f the achievements and prospects for radical change. It is not the intention of this article to overview the many arcane arguments that su rround NSM s notably how to characterize them, -

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whether they are rea l l y ' new ' or not, and their potential for progressive change . This has been done e xtensi vely elsewhere ( see Ba gg ule y 1 992; Fagan and Lee 1 9 97; Martin 200 1 ) . For our purposes we ne e d simply to note three substantive points. First, commentators such as H abermas ( 1 9 8 7 ) and Melucci ( 1 989) emphasized the cultural and sy m boli c n ature of these new movements, arguing that NSMs could resist the further encroach m ents of bu rea ucrat­ ized s ys tem s into e v eryda y life. Habermas ( 1 9 8 1 : 3 6-7) su ggests that these sel f-hel p organizations will develop in such ways as to chal lenge the organized political party system thro ugh t heir emphasis on expressive politics and more di rect forms of democracy. Second, and most importan t for our purposes, there are a number of significant contri butors who have characte r ized the disability move­ ment as an NSM. O liver ( 1 990) was the first, a rgu i ng that the d isabi lity movement ought to be characterized as an NSM, as it is internation­ al is t , aims at empowerment and consciousness raising, offers a critical evaluation of society, and lies at the periphery of the conventional poli­ tical system . Further, it is such a movement beca use it can be seen to focus on the quality of life of a particular section of society, and as such m ust be seen as post-materialist. For our p ur p oses, whether this characterization is correct or not is less important than the content of Oliver's desc r i ptors and the i mplicit j udgements contained therein. There is a celebr a tion of the rej e ction of con v enti o na l political forms and a strong belief in the inherently progressive nature of the enter­ prise that a c l early identi fiable di s abilit y movement has embarked upon. Third, it is clear from many commentators that NSMs should be viewed as co m p lex, flexible movements n eeding to adapt i n form and content to the environment around them . Whilst, in one sense, this may be regarded as a potential strength, it also signifies a certain tempora lity and fragility ( Ba rtholomew and Mayer 1 9 92). Giddens ( 1 9 9 1 : 1 55 ) indicates signifi c antl y that NSMs will o n ly be able to capita l ize o n thi s adaptability if they can connect with 'institutionall y immanent possibil­ ities'. For Gidd ens , and I would concur, this must i n dicate a n abi lity to engage with the wider, conventional political system.

Influence of postmodern analysis Increasi ngly, disability activ ists have argued that it is necess a ry to engage with developments in postmo d ern theory ( Shakespeare and Watson 1 997) if they are to properly conceptua lize their project. M u llard and

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Spicker ( 1 9 9 8 : 1 30) offer a useful summary of the essence of the 'post­ modern ' contri bution: In the postmodern period . . . . society has become more fragmented, more diverse, more full of differences . . . . Postmodernity can be described as the process which seeks to replace the values of homogeneity and universalism with those of . . . pluralism, variety and ambivalence.

As Bauman ( 1 992: p . ix) states, postmodernist theory braces people ' for a l i fe without truths, standa rds and ideals . . . . for sniffing a knife of unfree­ dam under any cloak of saintly righteousness'. At first glance, then, not a very likely a l l y for either critical wel fare theory or a radical politics wishing to champion precisely issues such as equality and rights, and disclose 'truths' a bout the e xtent of continuing inequalities and injust­ ices ! ( see Mann 1 998: 8 2 ) . This clear emphasis within postmodernism o n diversity, fragmentation and, a bove a l l , difference was welcomed by many radical scholars wrest­ ling with the precise ways in which 'class' issues and i dentities rel ated to other forms of 'difference' - sexualities, age, gender and, of course, i mpairments. It al lows for a certa in legitimacy to be attached to privil­ eging the pol i tical interests of separate groups. We c a n see that such contributions are possible, without any postmodernist vogue, by assess­ ing the power ful and i n fluential contribution made by Lister ( 1 99 7}. She argued that the term 'citizenship' conveyed a 'false universa lism' that failed to recognize the significant differences between the genders . It is one thing to recognize that diversity and difference must be accom­ modated by radica l activists, altogether another to know how to do this, and to what e xtent. The starting poi nt must be com prehending ful l }' the complexities of the social and structu ral relationships between such vari­ a bles as age, race, gender, sexua l ity and impairment. Some very insightful work has been done, and is documented perceptively by Wi lliams ( 1 994 : 207) . Building from such work, the second stage involves appreciating the optimum ways to make significant political gains. For it is vita l to recog­ nize that an unproblematic emphasis on 'difference' in the present con­ j uncture could be politica l l y problematic, if not dangerous. As Taylor­ Gooby ( 1 994} indicates, emphasizing diversity, pl ura lism and choice might easily be used as a smokescreen for the promotion of forms of selectivism, and the further residualization of welfa re . Fu rther, the use of discretionary benefits could easily be deepened; sectiona l groups could be p layed off agai nst each other; those caring for certain groups may

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be overlooked, or disadvantaged; precarious short-term projects could be relying on insecure and vulnera ble grant aid; new inequal ities could emerge, either i ntentiona l l y or unintentiona l ly. Moreover, the political strategi es that flow from these ' additions' are not always clear. Consider, for example, al beit briefly and simplistically, the contrast between ' l i be ral' (or 'rights-based' ) feminists, who adopt a universal position advocating sexual equali ty, and those 'di fference' feminists who would clai m that such equalities a re inevita bly ta ilored to suit the needs of men (Pateman 1 98 8 ) . We m ust be careful not to throw out the universalistic bathwater in the rush to ma rinade provision with various groups' diverse, and multi-faceted, identifi able needs. The notion of citizenship envi saged in the post-war settlemen t, whi lst funda­ mentally flawed, did at least recognize the i mporta nce of social rights. Is it possible to reconcile u niversalism with a proper political com m itment to recognizing, and accommodating, diversity ?

Difference and particularistic universalism In a most stimulating paper Thompson and Hoggett ( 1 996 ) suggest that it is. They o ffer a defence of what they describe as a 'sophisticated universalism' that, whilst committed to equality, is a bl e to be sensitive to d i versity by ' incorporating sign ificant e lements of both selectivism and particularism' ( 1 996: 2 1 ) . By this latter term, they a re descri bing a process whereby 'different standa rds are appropriate to different circum­ sta nces for different individuals and groups' ( 1 996: 22 ) . The core of their argument is contai ned in the following passage: If the particularistic critic of universalism condemns it for fa iling to notice a n d thus allow for d i ffe ren ce , then the mora l fo rce of that condemnation m ust be derived from a commitment to a normative princ ipl e holding that differences ( or at least certain d i ffe ren ces ) should be respected. But what is this norm of respect if not some kind of universalist pr i n ci p l e? (Thornpson and Hogge t t 1 996: 34)

They reinforce the point i n a more accessible manner: 'any universalism that m akes serious attempts to be sensitive to the differences between particular cases, and any particulari sm with the moral force to adj udicate between differences, are in fact the same theories looked at from opposite points of view' ( 1 996: 3 5 ) . More specifically, and meeting Taylor­ Gooby's charge a bove, they are c lear that 'the demand to protect rights, meet needs, or reward desert, can in practice enjoin very different treat-

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ments for particular individua ls or groups' ( 1 996: 3 5 ) . This has been a useful, i f somewhat a bstract, sortie that has a l lowed us to recognize that any successful p olitics of diversity must be ultimatel y guided - j ustified ­ by egalitarian, or universal, principle( s ) .

Self-organization Oliver's description of the disabil ity movement as an NSM implied a freshness, a certain 'romanticism', a bout its politics; a clear rejection of reformism and conventional political forms of activity. There is also a celebration of the fact that these activities lie at the perip hery of the conventional p o li t i ca l system. These activists have also established a c ritical evaluation of society, princi pal ly through a clear critique of model s that imply that the primary way to treat disabled people is to get them to adapt to the world as they find it. Grounding their p ractice firmly in what has become known as the 'social model' - effectively a structural sociological model - they have indicted the inaccessible environ ment they find themselves stuck in. Inaccessi ble buildings, transport designed to excl ude wheelchairs, housing that cannot accommodate those with mo­ bility problems, become objects for unequivoca l pol itical challenge. Such act ivis m has begun to critique the conventiona l ways in which disabled people have been regarded and treated, as well as to challenge the excep­ tional levels of discrimination that they face ( Ba rnes 1 99 1 ). In essence, the culmination of such activity has been the demand for equal rights and treatment. Much of the progress of the disability movement is due to such uncom­ promising natio n a l and international political organization and activity. There is now British, as wel l as American, legislation that does directly outlaw some, a l beit limited, forms of discrimination aga inst disabled people - see below. But the political context i nto which such demands were being made, as we shall see, was also significant. Ask ing the 'impos­ sible', demanding that people adopt completely new mind-sets - shooting for th e moon - h a s advanced the collective interests of disa b led people in Brita i n and the USA in significant ways. Is it, however, sufficient ? And a re there certain dangers with i n such an approach?

More than

a

new social movement ?

More often than not when academic commenta tors refer to the politics of disability, it is the emergence of the sel f-conscious movement described

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above to which they refer (Campbel l and Ol iver 1 996; Rcynolds in John­ stone 1 998: eh. 6 ) . The emergence of articulate, organized and effective disability activists is seen, quite correctly, as crucial - putting the politics into disability. However, as a l ready indicated, this article suggests that this is a limiting, and lim ited, way to understand the interrelationship between pol itics and disa b i lity, focusing too exclusively on the political activists, their actions and desires. I w i sh to stretch the linkages between these terms - 'pol itics' and 'disability' . Returning to our discussion of NSMs, some politica l progressive largely social democratic - commentators were much less pessimistic about the conjuncture de scri bed above, and a rgued that the labour movement had made , and consolidated, considerable gains in citizenship rights during the post-war period (Therborn 1 986; Esping-Andersen 1 98 5 ; Giddens 1 9 9 1 ) . Gains that had helped to create new opportunities for poli tical participa tion, whilst increasing the economic sec urity of previously marginalized sections of the population. For these c ommen­ tators - and I am i n considerable agreement with their position - NSMs needed to be seen as a di rect, material development within this new phase of politics. At i ssue here is the extent to which activists wish their activities to be seen as 'reformist' activities within the existing state machinery, or as unsullied, uncompromised activities outside such a framework. The ori­ ginal NSM concept applied to the disability movement in the early 1 990s was undoubtedly motivated by sen sitivity towards the latter position. However, over the years a number of commentators have acknowledged that the disability movement is concerned centrally with issues of co n ­ tinuing and deep material inequality. Shakespea re ( 1 9 9 3 : 25 8-9) pre­ serves the unsullied discourse by arguing that the movement has to focus on issues to do with 'liberation' rather than simply developing post­ material values. Fagan and Lee ( 1 997) put it more bluntly when insisting that so-called new social movements are every bit as much concerned with distribution issues a nd resource allocation as any other previous movements have been. Their point is that, at the end of the day, politics is a bout such perennial concerns.

The social model - conceptually strong, politically problematic The disability movement a lso offered a very clear critical evaluation of society, emphasizing the importance of consciousness raising. The central vehicle for this critique wa s , of course, the social model of disability. My

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argument will be that some over-simplistic applications of this model can promote an underdeveloped - indeed fundamentalist - pol i ti cs which inhibits the development of rea l istic strategies . Producing evidence of this i naccessible, segregated and exclusionary world is relativel y straightforwa rd. Yet how far is the 'able-bodied' ma­ jority prepared to go i n reconstructing 'its' social order so that ' it' can accommodate a far wider spectrum of a bi lities ? What political, adapta­ tional choices are this majority prepared to make; or rather, a s disability activists would see it, can they be forced i nto making? The social model developed from subjecting the time-hono u red manner of conceptualizing d i sa bility since the end of the nineteenth century - the medical model to a comprehensive critique ( Oiiver 1 996; Priestley 1 9 9 9 ) . This original model, as an ideal type, defines people as disabled as a result of conditions necessitating medical inter­ vention and diagnosis. Despite the clear limiting effects of this model on the way that disa bled people are conceptualized, the extraordinary 'suc­ cesses' of Western medicine has had far-reaching impact. The medical model, despite the growi ng i m pact of the socia l model on the pol i tical activity of some disabled people and the practices of some professionals, still holds enorm ous sway. This is partly, of course, due to the fact that medical diagnoses and interventions are so extremely im­ portant for the management and maintena nce of some disabling condi­ tions. It must be appreciated that we cannot simply d ispense with medicine ( see Doyal and Doyal 1 984 ) . Radicals still have to be able to conceptualize individual actions and individualized interventions; they cannot simply be 'magic-ed' away. Nor can individual action simply be reduced to structura l determinations. There has to be a politics of indi­ vidual actions and interventions, a nd in the case of d isability politics, this must recogn ize the saliency, and vital necessity, of medical interventions . In spite of this observation, it is not surprising that a thoroughly structural sociologica l view - the social model - has had such an enormous ideological i mpact over the last two decades. Non­ disabled people can relatively easily accept the idea conceptually that 'disabled' people are hugely constrained by an environment that is 'dis­ abling' . Its attractiveness is enhanced a lso by the fact that t he model has been so clea rly constructed out of the 'experiences' of disabled people, and disseminated br them. Yet we must be cautious. Left-leaning i n tellectuals equally accurately explain poverty or unemployment as systemic failures, not i n dividual ones. Of cou rse, i n a simple intellectual sense that would be true - many can theoretically appreciate that capita list society structurally generates poverry. But it would be phenomenal ly simp listic p olitics that merely -

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stated that we eradicate poverty by systemically overthrowing capitalism. It would be equa lly nai·ve not to recognize that the behaviour of certain indi viduals does compound their poverty, in the same way that i ndivid­ uals' smoking jeopardizes their health status. The soc i a l model , despite its conceptua l insights, has clear limita tions ­ not least, the potential simplistic and uncompromising, i ndeed frmda­ memalist, politics that it m ight generate (see Lee and Raban 1 9 8 8 ) . I n the last decade there has been considerable criticism of the social m odel from both within and outside the disabled m ovement. Barnes ( 2000: 443 ) observes that it is simply misinterpretation by some disabi l ity activists that has led these c riticisms to flourish. The simple fact is that to avoid such 'misinterpretations' requires a clear modification of the political drift of the model. Many disabled people themselves a re unconvinced that the model sufficiently allows for issues of personal identity. Following this theme, Hughes and Paterson ( 1 997) comment on the socia l model's theoretical basis for an emancipatory politics, but a re uncon vinced that this model could encapsulate an emancipatory politics of identity. Swain and french develop this point: Non-disa bled people can generally accept that a wheelchair user c a nnor enter a building becau se of steps. Non-disa bled peop le are much more threatened and challenged by the notion that a wheelchair use r could be pleased and proud to be the person he or she is. (2000: 570)

They construct an affirmative model, largely derived from work in the Disability Arts Movement, which asserts positive personal identities, both individual and collective, that combat the personal tragedy view. Finkel­ stein ( 2002 ) , on the other hand, suggests that any attempt to incorporate personal experiences detracts fro m the e ffectiveness of the social model. Shakespea re and Watson defend the model whilst warning, insufficiently in my opinion, that to base it too firmly on a Marxist world-view m ight lead a 'universalising and monolithic rationality' ( 1 9 97: 299 ) . They take up the theme explored above, and one increasingly popular across the British left, that the model has to develop 'a more nuanced world-view drawing on feminist and postmodern accounts' ( 1 997: 2 9 9 ) .

Limitations of identity politics One fi nal observation demands comment, and it derives from the em­ phasis placed on experie1ztial understanding with i n the model; only the

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'disabled' being able to have the proper political i nsights. As Branfie ld so graphica lly puts it 'Non-disabled people cannot possibly know. . . . . their experience, their h istory, thei r culture i s our oppression' ( 1 99 8 : 1 43 ) . rf the model does not incorporate sufficient understanding of personal identity, its employment by activists within the movement most certainly does! Such activists appear to want to exclude those without impairments from any front-line political i nvolvement. This position can only, in the long run, marginalize the pol i tics of disability, leading eventu a l ly to splits and recriminations a bout who can 'know' what a bout which conditions. An interesti ng debate has ensued, within the movement, about the 'visibil­ ity' of various conditions and the impediments to political progress im­ posed by such fundamental ism (see Drake 1 997; H um p hrey 1 999, 2000) . A n y pol itics based purely o n 'identity' i s likely t o face major problems, not least due to the fact that such socially constructed identities are con­ testable and subject to change; sub- and splinter groups emerge, as different aspects of the identities are prioritized. What of non-visible impairments ­ learning or mental health ones ? Or deaf people 'who are classified as disa bled . . . . but who repudiate the disabled identity on the grounds they constitute a distinct linguistic and cultural minority ? ' ( Hu mphrey 2000: 6 5 ) . Would it be acceptable for an obese woman to call hersel f disabled ? It is instructive to note how the social model became operationalized within th e UNISON group researched by Humphrey. She a rgues that it 'both reified the disability identity and reduced it to particular kinds of impairments - physical, immutable, tangible and "severe" ones - in a way which can deter many people from adopting a disabled i dentity and participating in a disa bility community' ( 2000: 6 9 ) . Humphrey goes on to suggest that an inclusive model of disa bility needs to be constructed. Her work dramatically poses the q uestion of what disabled activists mean by their 'community ' . However - another note of caution - it is a l l too easy to privilege the term 'comm unity' as much communitaria n discourse does, reifying it in such a way as to disguise considerable differences within it ( see Young 1 990 ) . When referring, for example, to the Muslim comm unity of Leicester, to whom are we referring - the community leaders (sic ) , the community of Muslim men, or whom ? What of gender, age, etc.? Hum­ phrey ( 2000 ) is precisely drawing attention to the considerable diversity of conditions that can be described as 'disa bled', and the vital political need for clear coalitions of interest to be esta blished between them . It is worth noting that ' disability' is a difficult category to both politic a l ly organize and respond to, given the wide disparities in the politica l dem ands which those different constituent parts make - from 'independence' through to improvement in conditions of 'dependency'.

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on

the agenda

Barnes et al. ( 1 99 9 ) are c lear that a 'civil rights' agenda was generated by the i nternational actions of the d isa bility movement. They document why anti-discrimination legislation (ADL) became the most favoured option for such political activists. We must, however, be cautious not to exagger­ ate this point. Other salient political factors must also be considered in a British context. First, control of Parliament by Thatcherite radical con­ servatism produced an extremely difficult situation for many British 'welfare' pressure groups concerned with lobbying. In this situation, H arlow and Rawlings ( 1 992: 2 9 8 ) suggest that legal processes were increasingly asked to assume the function of the surrogate political system. Second, community activism had blossomed i n the 1 9 70s, and out of such activity had developed the law centre movement. At a local level, radica ls were a ble to see concrete ga ins from legal interventions. Thi rd, pressure groups such as the Child Poverty Action Group and Mind were increasingly using public interest law to secure political change, the former by employing legal test cases, the latter through rights enforce­ ment. Gooding ( 1 994) and Barnes et al. ( 1 999) document the cam paigns, and the resultant limited successes, of the first extensive piece of ADL: the 1 990 Americans with Disabilities Act (ADA). Su bsequently, Australia, New Zealand, France and Britain introduced such civil rights-orientated legislation. The struggle for the 1 995 British Disability D iscrim i nation Act ( DDA) i s also wel l documented by Barnes et al. ( 1 99 9 ) . Of significant interest for o u r concerns is the political j udgement they make about the passing of this legislation. They suggest that it reopened internal divisions and brought to an end the uneasy coalition between organizations of and organizations for disa b led people. These a re the divisions referred to by Will iams ( 1 994 ) as struggles from below (of) and from above (for) . Barnes et al. ( 1 999) employ the more conventional distinction between 'reformist' organizations and 'radical' ones. With clear 'radical' sympathies, they are clearly worried that their members' interests will be diluted by too proximate involvement with the formal political system, and i n particular the state's administrative machinery. In an earl ier contribution Barnes and Oliver ( 1 996) depict this particula r dilemma most graphically: To get too close to the government is to risk incorporation and end up carrying out their proposals rather than ours. To move too far away i s to risk margi nalisation and eventual demise . . . . To remain aloof risks

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appearing unreal istic a n d / or unreasona ble, and denies possible access to much- needed resources_

( 1 996: 1 1 5 )

There is, therefore, a n understandable ambivalence in Barnes e t al.'s ( 1 999) descriptions of both the experiences of campaigns for British civil rights and the nature of their achievement. On the one hand, 'the disabled peoples' movement can claim to have made significant advance in convincing the general public of the merits of ADL'. On the other, one must be very sceptical of such legislation, and its implementation 'm ust be coupled with the spread of user-led initiatives' ( Ba rnes et al. 1 999: 1 72). Even with such initiatives, there is 'no gua rantee that these measures will be implemented as intended, or that their outcomes will necessarily be as anticipated' ( 1 999: 1 73 ) . Such intellectual ambivalence was matched politically by the refusal of ' radical' disability groups - of not for - to get involved with the consultation for the DDA. It was regarded as too weak and, i n any case, unenforceable. Of course, non-compliance cou ld have been a useful strategy to try to strengthen this piece of legislation . If it was so, it d id not work_ The DDA was, by any standards, an insufficient instrument.

State action The Disabil ity Discrimination Act ( 1 995 ) makes discrimination against disa bled people il legal in the areas of employment, services and the sale and rental of property. Howeve r, there are substantial limits on the scope of both the employment and services provision . Employment discrimin­ ation only applies to employers with more than fifteen employees in total, and does not a pply to certain categories: for example the armed forces, police officers, barristers and fire-fighters . The prohi bition agai nst dis­ crimination in the provision of goods and services expressly does not a pply to education and transport. Goadi ng in an insightful overview of the act's operations and development has argued that the DDA suffered from funda mental design faults: notably, 'its restrictive and complex definition of disabi lity; the broad scope for " j usti fying" potential discrim­ i nation, particu larly with regard to services; its failure to tackle indirect and direct discrimination' (Goading 2000: 542 ) . Moreover, the D D A failed t o i nclude a n y strategic enforcement agency such a s the Equal Opportunities Commission or Commission for Racial Equality. The DDA defines discri m ination in two ways. The first is 'less favour­ able treatment': where an employer or service provider treats a disabled person less fa voura bly for a reason to do with that person's d isabi lity, a nd

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cannot demonstrate j ustification for it. The second is if an empl oyer or service provider discrimi nates aga inst a disa bled person by fa i l ing to provide such reasonable adj ustment to the environment as requ i red by the act. Much re v ol ves around the concept of 'less fa voura ble': less favourable than whom ? We are back with d i sability and 'difference'; and I will return to it below. It is instructive to note that much of the lega l istic controversy revolves around disputation a bout medica l categorization, and / or other forms of individualized actions. There is little emphasis on col lective, proactive measures. British anti-discriminatory laws principa l ly operate by s e eki n g to create disincentives against discrimination. As Gooding indicates: This disincentive effect might be postulated to depend on the perceived like l i hood of successful l e g a l action being taken to counter discrimination and the estimated costs (in terms of financial compensation and adve rse publicity) to an employer or service provider of losing such cases. (Gooding 2000: 5 4 3 )

The Labour Party was critical of the DDA whi lst in opposition, and entered government in 1 99 7 with a manifesto commitment to secure civil rights for disabled people. Towards this end a Disabled Rights Taskforce was set up. Its report From Exclusion to Inclusion ( Disability Rights Taskforce 1 999) made a significant number of recommendations. In particular, the DDA's right of non-discrimination should be extended to small employers, prison and police officers, and, in modified forms to take a ccount of the particular nature of such services, to education and transport. New Labour also rectified the lack of an enforce m ent agency by creating the Disability Rights Commission ( DRC) in April 2000. My concern is not with the minutiae of these legal enac t ment s and the procedures they invoke, but rather with the principles at work, and at stake, in their operations. Freedman ( 1 999) argues that if the deep-seated prej udices experienced by ce rt a i n groups are to be tackled effectively, it is essential that the am biguous and restrictive goal of 'equ a l opportuni ties' is transcended (see Drake 2001 ) . This means a dopting the political goal of 'substantive equality', involving the use of social pol icy i nstruments such a s education, training and family friendly measures. E ffecti vel y this could shift emphasis away from individualized instances o f ' un fair' or 'unequal ' treatment on to m ore proactive actions promoting equal op­ portunities ( a ffirmative action programmes) and encouraging employers into 'good' practices (contract compliance). This is not to argue that combating discrimination should be seen, as it is in European Community measures, as exclusively a w elfa re matter.

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A 'rights strategy' is a necessary, but not a sufficient, strategy. In particu­ lar, with regard to disabled people, there needs to be an assertion o f positive rights to supplement the right to equal treatment, even when the latter guarantees the valuing of differences a nd di ver sities . A strong welfare e lement must be central - collective provision of transport, caring and health services, and education - for those who cannot meet their needs within the labour market.

Politics, 'difference' and work It is essential to examine what we mean when we a rgue that disabled people a re 'different'. Some people are born 'disabled', and, as we h ave seen, the social construction of d isa b i l ity , and in particular the structure of the social environment, compound and reinforce those initial 'disabil­ ities ' . Others - many others - become disabled during the life course - a fact of huge political signi ficance. There are three other further vital issues that requ i re noting. The first i s that the d isabled people considered within the soc i al constructions to be the least able-bodied - the least able to l ive 'normal l i ves - have been r es ponded to politic a l ly. It has long been an established principle that some disabled people should be, and a re, treated differently - an obvious example being that whilst all children's needs are covered between the ages of three and sixteen, children with special educational needs may receive more resources. Second, financial support for disabled persons differentiates not only between the able-bodied and the disa bled, but also in accordance with the assessed severity of t he impa irment. Thi rd, much of this provision may, and often does, contain elements of severe discrimination agai nst disabled people (Barnes 1 99 1 ). Yet this new postmodern e m phasis on 'di fference' appears to m ean for disabled people, at first glance and somewhat iro n ica l ly, forget your differences. Simply adapt the environment. Simply restructure the e n vir­ onment, and those 'differences' - in terms of our abil i ty to contribute and be productive - will simply melt away. As Bran field ( 1 99 9 : 40 1 ) p uts it, 'the disa bil ity movement, at its mo st basic level, is fighting for our right not to be disabled . . . there is . . . . nothing inevitable abo u t disa b i l i ty. Stated thus, this is a politically dangerous idea , for it minimizes, an d potentiall y trivia l i zes, the necessary social care and accomm odations that many d i sable d people require . A t a comm o n - s en se leve l, a nd withi n the present political conj uncture as descri bed above, there wou ld also he considera ble resistance to tak i ng this idea , as Branfield does, to its logic a l conclusion. The soc ial model '

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simplistically applies to all i mpairments. I can hear people now - 'Of course , there are ba rriers to certain people, disa bled people, doi ng certain jobs - brain surgeon ( learning difficul ties ) or electrician ( partially sighted).' I ndeed, I can hear some of my own students in seminars. In the United States a lega l category of 'insurmountable barriers' can be i nvoked i n anti-discrimination discourse, barriers related to an impair­ ment that would cause, even with appropriate modification, i n superable problems in accessing and carrying out certain types of work . Such intellectual resistance would involve a severe, but - and this is also a n important point - unde rstanda ble misunderstanding. Of course, there a re certain jobs that no amount of modification of the environment will enable people with certain impairments to perform. Such people would simply not be able to meet a basic job specification : that is, they would not be quali fied for the job - in the same way as I was never able, sadly, to play for Manchester United or asked to accompany Miles Davis! So such common-sense a rguments should not be the starting point of resistance to change, and they can be combated. I n realpo/itik terms, the maj or source of resistance will a lways be, as noted earlier, the costs to the employer of carrying out the necessary restructuring. The world of work is, in a ny case, changing ra pidly; undergoing constant, and necessary, restructuring. Employers have to introduce major changes in their infrastructure and practices merely to keep up with competitive pressures. Cas tells ( 1 996 ) assesses the recent changes i n the productive force s - i nformationalization, shifts away from manufac­ turing to service industries; the general effects of globalization, etc. - as of greater significance than the original transformations wreaked by early industrialization. Barnes ( 2000) suggests that these developments offer a major strategic opportunity for major political advances by disabled people. Certainly computerized technology does appear to open up considera ble possibilities for employment for certain categories of dis­ abled people, and one that complements New Labour's objective of returning people to work and taking them off benefits . Vast savings could be made of social security budgets by increasing disabled peoples' access to work. Without disagreeing with Barnes, I must add some notes of political caution. First, as Barnes ( 2000 : 446 ) recognizes, these flexible production techniques may be enabling to some, but will increase the social isolation of others. Second, potential beneficiaries are much more likely to be those disabled people whom we noted above are in the vanguard of the disabil­ ity movement. The i ncreased social isolation and margi nalization are likely to a ffect people with learning difficulties, the mentally distressed and older workers.

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It would be unproductive to try to politica lly organize to force all large employers to adapt their e nvironments in the s hort, or even medium, term for every variety of impai rment. The costs would be massive and, as such, would be a constant, and successful, cause of employer resistance. How­ ever, within localities, agreements could be brokered that facilitated, through government quota schem e s , the adopti on of cer ta i n environments for certa in i m pa irments, i ncluding learning difficulties. This would reduce choice of work for disa bled people, and some sections of the movement might oppose it on these g rounds, but it could achieve significant pol i tical gains for ma ny. Government departments could be charged with initial quotas, alongside other public bodies such as local authori ties and univer­ sities. The political brokerin g could also involve shifting the control of grants to disabled people from certai n voluntary and privatized organiza­ tions to organizations o f disabled people ( Barnes 2000) .

The politics of coalition

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conclusion

This chapte r has established a number of key things a bout the relation­ ship of disabi lity and politics. First, there remain maj or barriers within the electorate to recognizing that d isabled people are entitled to ful l , and equal citizenship, or civil rights, and can make p roduct i ve contributions to society, particularly in the world of work . Second, there is an irony to this, as many working people and older people will become disabled themselves . Thi rd, and reflecting the above two points, the disabil ity movement manages only to engage with a narrow constituency of the disabled . There are considera ble 'absences', such as older persons with severe physical i mpairments and people with learning difficulties. Fourth, campaigns based on the social model of disability wi l l , and have, pro­ duced some significant gains, but over- rel iance on it can also produce a simplistic and fundamentalist politics incapable of difficult pol itical cal· culations. For example, i t is very d i fficult to privi lege the choices of disabled people - which may, and will, di ffer - at the same time as winning the a rguments w ith the e lectorate a bout the fact that disabled people should be al lowed such ch o ices . Moreover, w hat has to be worked out is how to m a ke it impossible for governments to ignore carefully orchestrated demands and campa igns. Difficult, sensitive political calculations will have to be made i n the next few yea rs of struggle. Politics is not just a bout powerful ideologies and di rect action ; it is also about smoke-filled rooms, balancing interests and, often, m a k i ng only slow and pa inful ga ins. It is about the nature of the opposition and w h y it i n h i bits, or de feats, p rogress. So political

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j u dge men t s have to be b roug ht to bear on da y to day d e ve l o pm e nts . What should be prioritized t he n ? First, there is great pote n t i a l , in my opinion, in campaigns that stress that all peop l e a re 'ta bs' - temp o ra ri l y 'a ble-bodied' . As ind ic a te d above, a dv e rt ising campaigns for pensions and life insurance a l rea dy 'tap' in to this. This would c re a te a con s i de r a b l y more em pathet i c environ ment in which more s p ec i fi c demands could b e m a d e . An a n a l o gy would b e w i t h men's health issues. For years, go ve r nm ents a rg u ed that m e n simply w o u l d not be in te re s t ed in campaigns a b ou t their health. Yet, campaigns in Australia ( see Lu pto n 1 995: eh. 4) ha ve had a h uge impact, and the recent British television advertisement involving Rob b ie Will i a ms high­ l i gh ting the need to check for te s t ic u l a r cancer has been muc h discussed. Second, of course, ca re fu l l y s e l e cte d campa i gns highlighting t h e inad­ equacies of t h e DDA l egis lat ion m ust be d e s i gn ed and carried out, chosen to h i g h l ight the worse ' a bsences' in c o v era ge . These exte rnal campaigns, however, shou l d not be all owed to prevent engagement with the present state machinery. We should also not underestimate that these ca mpa i gn s m a y s tr ugg l e to engage a l l d i s a b led people in situ for exa mple, in edu ca t i o na l establishments w i t h out effective access. Third, heavy e m ph as i s should b e placed on t h e p o l i t ics of c o a l i t io n, in which 'identities may be su p pl a n te d by iss ues , as substantive campaigns around housing, health, we l fa re , e duca tio n , employm e nt , immi grat io n , reprod uc ti o n and media re pre se n t at ion s combat 'the m ul ti d i m e n s i on a l opp ress i o n m a t r i x (Hu m p h re y 2000: 75 ) . There is, in my opi n i on , much po te n ti a l for c a m p a ign s that l ink up with older people for e x a m p l e , for better pe ns i o n s and guar a nte e d ri g h ts to hea l t h care treatment. We will all age, an d , as stated a bove, this co ul d be heavi ly s tress e d in such campaign­ ing. Fourth, m a jo r efforts have to be made to engage those pa rts of the dis ab l e d constituency that the m o ve ment itsel f a cc epts that it i l l serves . -

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REFERENCES Ba gg u le y P. 1 9 92 : Social cha nge the m iddle c l a s s and the emergence of 'new ,

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social movements' : a critical analysis. Sociological Review, 40 ( 1 ) , 26-48.

Barnes, C. 1 99 1 : Disabled People in Britain and Discrimination: A Case for Anti­ Discrimination L egis latio n . London: Hurst.

Barnes, C. 2000: A wo rking s oci a l mode l . Critical Social Policy, 20 1 4 ), 44 1 -5 7.

Barnes, C. and Oliver, M. 1 996: Disability r igh ts : rhetoric and reality in the UK. Disability and Society, 10 ( 1 ), 1 1 1- 1 6 . Ba rnes, C . , Mercer, G. a n d Shakespeare, T. 1 9 9 9 : Exploring Disability: A Socio­ logical Introduction. Cambridge: Polity.

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1 4 1-59. 1 992: Intimation of Postrnodernity. Lon d on: Routledge . The Third Way. London: Fa bi a n Society. Branlield, F. 1 99 8 : What are you d o i ng here ? N o n d i sa b l e d people and the disabi lity movement: a response to Robert F. Drake. Disability and Society, 13 ( 1 ) , 1 43- 4. Branlield, F. 1 999: The disabi l i ty movement: a movement of disa bled people a response to Pa ul S. Duckett. Disability and Society, 1 4 ( 3 ), 399- 403. Campbe l l , J. and Oli ver, M. 1 996: Disability Politics: Understanding Our Past, Changing Our Future. Lon d on : Routledge . Castells, M. 1 996: The Information Age: Economy, Society and Culture, vol . 1 : The Rise of the Network Society, .Mol d e n M A : Blackwe l l . Disabil i ty Rights Taskforce 1 999: From Exclusion to Inclusion. London : Depart­

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than the Parts: The Politics of Biology. London: Pluto Press. Drake, R. F. 1 997: What am I doing here ? 'Non disabled' people and the disa bil­ ity movement. Disability and Society, 12 (4), 643-5 . D rake, R. F. 20 0 1 : The Principles of Social Policy. Basingstoke: Palgrave. Esping-Andersen , G. 1 985: Politics against Markets - the Social Democratic Road to Power. Cambridge , MA: Harvard University Press. Faga n, T. a nd Lee, P. 1 997: 'New' social m ovements and social policy: a case study of the disa bil ity mo veme n t. In M . Lavelette and A. Pratt (eds), Social Policy: A Conceptual and Theoretical Introductimz. London: Sage, 1 40-60. Fa irclough, N. 2 0 0 0 : New Labour, New Language? London : Ro utled ge . Finkelste i n , V. 2002: The social model of di sab i l i ty repossessed. Coalition ( Feb­ ruary ): Greater Ma nchester Coa lition of Disa bled People, 1 0- 1 7. Freedman, S. 1 999: A Critical Review of the Concept of Equality in UK A nti­ Discrimination Laws. Cambridge: Unive rsity of Cambridge Centre for Public

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The Third Way and its Critics. Ca m bridge : Polity. Where Now For New Labour? Cambridge : Polity. Gooding, C. 1 994: Disabling Laws, Enabling Acts: Disability Rights in Britain and America. London : Pluto Press . Goad ing, C, 2000: Disa b i l i ty D iscrimination Act: from statute to practice. Crit­ ical Social Policy, 20 (4), 533- 49. Habermas, J . 1 98 1 : N e w social movements. Telos, 49, 3 3-7. Habermas, J. 1 98 7: The Theory of Communicative Action, vol. 2. Cam bridge: Po l i ty. Giddens, A. 2002 :

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Hall, S. 1 998: The great moving nowhere show. Marxism Today, November / December, 9-1 4 . Hall, S. and Jacques, M . 1 9 8 9 : New Times . London: Lawrence a n d Wise hart. Harlow, C. and Rawlings, R. 1 992: Pressure through the La w. London: Rout­ ledge. H umphrey, J. C. 1 999: Disa bled people and the politics of di fference. D isab ility and Society, 1 4 (2), 1 73-8 8 . Humphrey, J. C. 2000: Researching disability politics, o r some problems w i t h the social model in practice. Disabili ty and Soc iety, 15 ( 1 ) , 6 3-8 5 . Hughes, B . and Paterson, K . 1 997: The social model o f disability a n d the disap­ pearing body: towards a sociology of impairment. Disability and Society, 1 2, 325- 40. Johnstone, D_ 1 9 98: An Introduction to Disability Studies. London: Fulton. Lee, P. and Raban, C. 1 98 8 : Welfare Theory and Social Policy: Reform or Revolution. London: Sage. Lister, R. 1 997: Citize nsh ip : Feminist Perspectives. London: Macmillan. Lupton, D. 1 99 5 : The Im pera t i ve of Hea lth . London: Sage. Mann, K . 1 998 : Lamppost modernism: traditional and critical social policy ? Critical Social Policy, 1 8 ( 1 ), 77- 1 02 . Martin, G . lOO t : Social movements, welfare and social policy : a critica l analysi s. Critical Soaal Policy, 2 1 ( 3 ) , 3 6 1-8 3 . Melucci, A. 1 98 9 : Nomads of the Prese nt : Social Movements and lndir•idual Needs in Contemporary S oc iety. London: Hutchinson Radius. Mouffe, C . 1 998: The radical centre: pol itics without adversaries. S o un di1Zgs , 9, 1 1 -23. M ulgan, G. 1 998: Whin ge and a prayer. Marxism Today, Novem be r / December, 1 5-1 6 . Mullard, M . and Spicker, P. 1 99 8 : S o cial Policy i n a Changing S ociety. London:

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Ol iver, M. 1 990: The Politics o f Disablement. Basingstoke: Macmillan. Oliver, M. 1 996: Understanding Disability: From Theory t o Pra ctice. Basing­ stoke: Macmi llan. O liver, M. and Barnes, C. 1 998: From Exclusion to Inclusion: Social Policy and Disabled Peop le . London: Longman. Pateman, C. 1 9 8 8 : The Sexual Contract. Cambridge: Polity. Priestley, M. 1 999: Disability Politics and Community Care. London: Jessica Kingsley. Rae, A . 1 9 89: What's in a name? Int e rna t ional Rehabilitation Review, 8 . Rustin , M. 1 999: A Third Way with teeth. S oundings , 1 1 , 7-2 1 . Shakespeare, T. 1 993: D isabled people's self-organisation: a new soc ial move­ ment ? Disability, Handicap and Soc ie ty, 8 (3), 249-64. Shakespeare, T. and Watson, N. 1 997: Defending the social model. Disability and So ciety, 12 (l), 293-300. Swain, ]. and French, S. 2000: Towards an affirmation view of disa bility. Dis­ ab i lity and Society, 15 (4 ) , 569-82.

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Taylor-Gooby, P. 1 9 8 5 : Public Op inio n, Ideology and State Welfa re. London: Roudedge & Kegan PauL Taylor-Gooby, P. (ed. ) 1 994: Postmodern ism a nd social policy: a great leap backwards ? journal of Social Policy, 23 ( 3 ) , 3 85- 404. Taylor-Gooby, P. (ed.) 2000: Risk, Trust and Welfare. Basingstoke: Macmillan. Therborn, G. 1 986: Why Some People are More Unemployed than Others. London: Verso. Thompso n , S. and Hoggett, P. 1 996: Universalism, selectivism and particu larism: towards a postmodern social policy. Critical Socia l Policy, 16 ( l ) , 2 1 - 4 3. Westergaard, J . 1 999: Where does the third way lead ? New Political Economy, 4, November. Wil l i a m s, F. 1 994: Somewhere over the rain bow: universality and diversity in social policy. In N. Manning and R_ Page (eds), Social Policy Review, voL 4, London: Social Policy Association, 200-1 9. Young, L 1 990: The ideal of community and t h e politics of difference. In L Nicholson (ed . ) Femimsm I Postmodernism. London: Routledge, 3 00-2 3 . Zarb, G . 1 993: The d u a l experience o f ageing w ith a disabi lity. I n J . Swain, V. Finkelstein, S. French and M. Ol iver (eds), Disabling Barriers - Enabling Environments, London: Sage, 1 8 6-9 5 .

9 Academic Debates and Political Advocacy: The US Disability Movement

Harlan Hahn

Introduction The issue of di s a b i l i ty in the USA a nd elsewhere has re fl ec te d w idel y di v e rge n t orientations as well as radical shifts in p ubl i c policy during the twentieth century. C ont rary to pop u l a r bel ief, e fforts to improve the status of disabled citizens have b ee n ma rked by significa nt change s . Mu ch of the variation can be explai ned by the fact that so-ca lled ex pe r t s and professionals h ave never been able to reach a gree m e n t on policies concerning t he str uggle s of disabled people. Four issues in these dev e l op ments seem es pe c ia lly i mport a nt First, most politic al c h a n ges h a ve b ee n p r e ce d ed by an intense conflict a mong researchers and p rofe ssi on als about the most a ppropri ate framework for studyi ng d isab i l i t y Second, despite the seemi ngly abstract - or e v en e soteric - nature of these debates, the ou tc om e of t h e arguments has been shaped, at the end of the day, by social an d po l i tical considerations rather than by the al lege d success or fai lure of plans based on any of these st ud i es . Third, e ve n the l i mited or begru dgin g acceptance of a new a p proach o r d in a r i l y did not occur be c au s e an earlier paradigm wa s vanquished . I n stead prior theoretical constructs ordinarily have s urv iv e d a longside the latest plans. Finally, at ­

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This study w a s supported in p a r t b y a M a r y Switzer D i stinguished Rehabilitation Researc h

Fellowship from the National Institute on Disabil ity and Reh a bilitation Research ( N I D RR ) .

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least until recently, disabled people themselves have seldom been invited to participate in such d iscussions. Obviously these ten dencies have had many d ifferent effects. One con­ sequence has become particularly evident when the remedies implied by established paradigms have not been successful in achieving the results they initially appeared to promise. In such circumstances, researchers and policy makers have frequently been provoked to begin a renewed search for innovative ideas and c reative solutions. Unfortunately, many of the individuals who formulated earlier measures have already invested so much intel lectual energy and resources in existing plans that they are reluctant to advance new proposals. The capacity of politicians or pro­ fessors to change their minds or to relinquish reputations based on previous work in order to pursue a lternative solutions is rare. The purpose of this analysis is to examine several different concepts that have previously been adopted as a basis for improving the status of d isabled people and to explore new thoughts and proposals that m ight achieve this objective in coming years. Although an effort is made to incl ude comparative data, this investigation focuses primarily on a case study of changes in US disability laws a nd programmes . The first section contains a brief history of disabil ity policy, including the problems created by j udicial resistance to anti -discrimination statutes such as the Americans with Disabilities Act. An attempt wil l be made to assess the strengths and weakness of proposals that stem from the emerging social model for research and advocacy on beha lf of disa bled people . The second portion assesses the threat to the l ives of disabled citizens posed by plans such as rationing health care, assisted suicide and other medical interventions founded, in pa rt, on quasi-utilitarian constructs and on cost-value analysis. The final part investigates severa l possi ble innov­ ations impl ied by the principle of empowerment. In pa rticular, emphasis is devoted here to the possibility of enhanc i ng the strength o f disabled citizens through permanent, systemic and institutional change in the policy-ma k i ng process.

A brief history of disability

policy

One dom i n a n t i ssue in early controversies surrounding disabled people and soc iety has revol ved a bout compet i ng claims concerning the associ­ ation between disability and work. Prior to the transition from feudalism to capital ism, ma ny disa bled individua ls worki ng in families supported by peasa nt fa rms and small shops made i m portant contributions to household econom ies. Yet, policies dating from the e a rly Engl ish Poor

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Laws, which defined disabled people as almost the only grou p worthy of receiving so-called outdoor relief that did not require them to live in dreaded a lmshouses or workhouses, a lso seemed to be founded on the supposition that disability signified an inability to work. The fi rst major disabil ity policy adopted i n the United States, for e xample, was designed to a i d officers of the Revolutionary army who 'became so disabled as to prevent thei r. . . getting their livelihood, and may stand in need of relief' ( quoted in Liachowitz 1 98 8 : 2 2 ) . Such program mes were also designed exclusively for military o fficers, rather than enlisted personnel; money for the first such benefits was not appropriated by Congress until long after most e ligible recipients had died. In the nineteenth century, the so-ca lled Arrears Act of 1 8 79 was enacted seemingly on the premiss that veterans who had survived for more than twenty years after the Civil War had become eligible through disability or other means to receive benefits that a Republ ican Congress wanted to dispense to former members of the Union army ( Skocpol 1 992 ). None the less, the keystone o f US wel fare policy, the Social Security Act, enacted during the administration of a powerful disabled president, was designed to provide government bene­ fits only on the basis of age, not disability. During World War II, exten­ sive provisions were made for the medical rehabilitation of veterans with disabilities. However, direct payments to unemployed disabled persons were not provided in the USA until a post-war compromise defining disability as a n inability to engage in 'substantial ga i n fu l activity ' was finally adopted by Congress (Erlanger and Roth 1 98 5 ) . A s Western nations emerged from the transition from feudal ism to capitalism, as well as the separation of home and work, the economic value o f d isabled workers became a growing concern. Despite the prior resistance of the Supreme Court to a l most any form of government regulation of the US economy, state workers' compensati o n laws were passed in the early twentieth century to protect l a bourers from serious inj ury o r disability due to accidents in operating crude machinery ( Erlan­ ger and Roth 1 985 ) . Perhaps the principal public response to the growing problem of joblessness and begging a mong disabled citizens, however, was the introduction of vocational rehabilitation program mes. These plans were first adopted for disabled veterans of World War I, and they were broadened in 1 920 to i nclude unemployed disabled civilians (Ober­ mann 1 965 ) . As predicted by Marx's concept o f an 'industria l reserve army', when the demand for labour in defe nce industries increased during World War II due to the absence of young, non-disa bled, heterosexual and predominantly white males serving in the m i l i ta r y abroad, disabled workers, along with other oppressed groups such as ageing individuals, gays and lesbians, African-Americans, La tin os a n d housewives, were

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temporari ly admitted to the work-force. Disabled adu lts, who compi led favourable work records during these years, were granted the opportunity to hold j o bs primari l y through the waiver of requirements that all em­ ployees pass a medical examination. But, with the massive return of non­ disabled veterans a fter the war, these requirements were frequently re­ instated ; and unemployment among disabled workers continued to soar. The ubiquitous questions about disability on job applications and admis­ sion forms became a device primarily to sort out an excessive number of candidates during a period of h igh demand for employment and, thereby, to simpl i fy the complex decisions that must be made in the h iring process. Despite the boasts of rehabil itation counsellors who claimed extraordin­ ary success i n job placements to impress gull ible politicians, the i ncredible unemployment rate that plagued disabled persons in the USA and other industria lized countries remained at the level of approximately two-thirds ( Bowe 1 978; Hahn 1 98 4 ) . The major theme of reha bilitation research in the post-war years was an emphasis on so-ca lled psychological adj ustment ( Abberley 1 99 3 ) , which in the USA could mean either a relentless struggle to 'overcome' an impairment or a passive acceptance of supposed limita­ tions du ring extended periods of unemployment. By the final quarter of the twentieth century, there was a growing search for new programmatic approaches to the social and economic problems that con fronted disa bled people everywhere in the world. In both developing and industrial ized nations, disabled citizens have been com pelled to encounter extraordina ry levels of poverty; m assive un­ employment, formidable barriers to housing, transportation and freedom of movement, as well as exclusion or segregation in education and public accommodations. At least part of the source of these developments could be traced to extraordinari ly high rates of unemployment; vocational programmes primarily for the most co-operative, middle-class and least impaired cl ients; as well as the lack o f effective services for signifi­ cantly impaired individuals. Hence, the i nitial objectives of the US Re­ habilitation Act of 1 973, which was finally passed by Congress over President Nixon's veto, included pla n s to conduct a study o f environ­ mental ba rriers, to reverse the priority i n rehabilitation programmes that had previously favoured their least impaired clients, and to esta blish plans to aid disabled individuals for whom employment did not appear to be a ' feasible' economic goal . Perhaps the most crucial component to this measure, however, was an anti-d iscrimination clause known as Section S04, copied almost verbatim fro m the Civil Rights Act of 1 964, that appl ied to institutions receiving 'substantial Federal financial assist­ ance'. This cla use was i n se rted in the rehabilitation bill by Congressional staff mem bers a l m ost as an a fterthought ( Scotch 1 9 8 4 ) . I n accordance

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w ith co n ventional p r ocedures , th e Depa rt m e nt of Hea lth, Education

and Welfa re (HEW) was designated as the lead agency to d r a ft admin­ i s tr a ti v e rules to implement this p o r t i o n of the l eg i slat i on . De s p it e at­ te m pts by disabled citizens to persua d e government officials to s ign the regul ati ons , no a c t i on had been taken d u r i ng three presidential administrations. The fi r st national law to p rotect disabled Americans fro m the effects of p e rnic i ous discrimination, therefore, was not enacted after an intense legislative c ontrove r sy, a relentless struggle to gain b roa d pol itical sup­ po rt , or m as s i v e public prote st s and demonstra tions. Moreove r, most of the m e m b e rs of C ongr e s s who v o t e d for the final version of the R e ha b il i ­ tation Act had little und e rsta ndi ng of the content or meaning of S ect i o n 5 04. When HEW lawye rs bega n to comprehend the s we e p i n g i m pl ic a­ tions - and the po tent ial costs - of this legal requirement, to p adm i nis ­ tr a to rs res ponded by a t te m pt i ng - in a word that wo u l d eventually become an infamous part of the Wash ington lexicon - to 'ston e wall' the issue, simply by not taking any a ctio n on it. Despite repeated efforts to per s uade government officials to sign reg u l at i o n s drafted by attorneys, n othing had been done about the matter when Presi d e n t J i m m y Carter e ntered office in 1 977. The unenviable task of c h oos i ng between the claims of disabled peop l e and p o l i t ic al wor r i e s a b o ut b u d geta r y concerns as well as broad l e gal p recede n ts , therefore, fell to Carter's new S ecretary of H ea lt h , Education and Wel fare, Joseph A. Cali fano, J r. For a while Califano continued to stall, but the i m per a t i ve to s ign the regulations became almost i ne scap a bl e when a group of disa bled people organ i ze d sit-ins and protests at HEW o ffices and elsewhe r e . These demonstrations have been described as exemplary m ode l s of po l i t i cal protest (Johnson 1 999; Shaw 1 99 6 ) . Another event that may have contributed to C a l i fano's decision to sign the regu lat i o n s on 28 April 1 977 happ ene d twenty-five days ea r li er. While d i s ab l ed protesters were p ic k e t i ng his home, Cal i fano suddenly re a l iz e d that his dog was not in the house. Cal i fano ( 1 9 8 1 : 260) a llowed hi s i magi ne d fears to influence his j u d geme nt. Later he said, ' I saw the television pi ctures and the newspaper head lines: CALIFANO DOG ATTACKS CRIPPLED WOMAN . . . CALIFANO DOG BITES BLIND MAN.' The percepti o n of rigid cultural norms that moulded Califano's behav­ io u r certainly seemed to permit less discretion than the attitudes that s haped Sheriff B u l l Connor's decision to use po lice dogs and fire hoses against a group of demonstrators led by the Rev. M a rt i n Luther K i n g, Jr., a lmost fifteen years e a r l ie r in B ir m i n gh a m , Alabama. Califano's acti o n may re vea l the faint residue of pate rnal ist i c sentiments that had moulded n on-d isa bled beliefs about disabled people for ce n t u r ies; but t he s ign in g

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of the regulations signal led a victory that would open up opportunities for many new developments in the interpretation of disability rights . Suddenly aware that the signing of the Section 504 regulations had actually been caused by these protests, the disabled segment of US society, which had been a lmost politically dormant even when a promin­ ent disabled leader was elected President, began to stir sl ightly. Several new developments began to indicate that many disabled people were prepared to claim a direct role in decisions affecting their fate. At the University of Illinois and the University of California, Berkeley, for example, d i sabled college students demanded to leave hospitals and nursing homes in order to live on their own. This defiance of professional a uthority led to the emergence of the concept of independent living which was, at first, so closely intertwined w i th the struggle for equal rights that they were frequently described as the ' independent living I disability rights movement'. Other goals were sought in the courts by disa bled individuals who initiate d litigation ( Olson 1 9 84) before the formation of groups such as the Disabi lity Rights Education and Defense Fund (DREDF). The trend marked by protests, demonstrations and acts of civil disobedience, of course, was also pursued in l ocal incidents such as the one-day stoppage of bus traffic in Denver, Colorado, by 'the gang of nineteen' and the Rev. Wade Blank, one of the founders of a group known initially as Americans D isabled for Accessible Public Transporta­ tion (AD APT ) . Some o f the changes that occurred in the disability rights movement are illustrated by transitions within ADAPT in the final quarter of the twentieth century. For several years, ADAPT focused on attempts to persuade the America n Public Transit Associ ation (APTA ) to pass a resol ution call ing upon its mem bership, which consists primarily of municipal transportation bureaus, to provide full access to disabled passengers o n public vehicles. Blocki ng the sightsee i ng buses of APTA delegates after their business meetings, wheelchair users frequently re­ vived another theme from the civil rights movement by demanding ' access to the bus, even if it is the back of the bus'. APTA often called the police to arrest the demonstrators, and ADAPT leaders later held news confe rences to disseminate inform ation about the inaccessibility of local gaol s. While gove rnment policy on the accessibil ity of pub l ic buildings and transportation evolved at a glacial pace ( Katzmann 1 9 8 6), the conflict between ADAPT and APTA was con stantl y re-enacted throughout the 1 9 80s. In the last decade of the century, however, several factors, includ­ ing the death of the Rev. Blank, caused ADAPT to concentrate on efforts to get disabled men and women out of n u rsing homes a nd enabling them

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to gai n the support needed to l ive in their own homes. A D A PT wanted to allocate a fraction of the funds designated for nursing homes and grant them directly to disa bled individuals so that they could hire their own personal assistants and defray other costs of l iving independently. By replacing the American Public Tran sit Association with the nursing home industry, ADAPT challenged a formidable adversary. The issue, however, embodied numerous themes - including de-institutionalization, attendant or assistive services, and persona l autonomy - that had been a significant part of the disability move ment for years. Moreover, these acts of civil disobedience may have contributed to the growth of a new sense of personal and political identity among disabled citizens. A survey of ADAPT demonstrators, for example, found that more than half would not take a 'magic pill' to become cured; and these feelings were most c losely related to a positive rather than a negative orientation toward the i r experience as disabled people ( Hahn and Beaulau rier, in press) . Meanwhi le, the i nstability stirred by the growing i nfluence o f d isabled Americans was also reflected by a mounting debate among academicians engaged in the study of disa b i lity. While some members of the non­ disabled public seemed willing to accept at least some of the objectives implied by the concept of i ndependent l iving, researchers as well as ordinary citizens appeared to resist the goal of equal rights. During the last quarter-century, a group o f u niversity professors, many of whom were disabled themselves, began to dism antle the conventional paradigm that had long dom inated i nvestigations of disability. Oliver ( 1 990) per­ formed a crucial task by dissecting 'the sense of personal tragedy' that permeated perceptions of disability in Western culture. In addition, in­ creasing controversy began to revolve around the definition of disability ( Liachowitz 1 98 8; Higgins 1 992; Bickenbach 1 993; Swain et al. 1 993 ) . Much o f this debate also focused o n a socio-political concept, which defined disability as the product of interactions between individuals and the surrounding environment ( Hahn 1 98 2 , 1 985a, 1 9 85 b, 1 9 86b, 1 9 8 7a, 1 993a, 1 993b). From this perspective, of course, disability can be per­ ceived as the product of a disabling environment instead of organic impairments, defects or deficiencies. This understanding provided an agenda for the examination o f topics such as personal identity, architec­ tural or communications barriers, accessible transportation and public accommodations, and unfair practices in employment, education and government programmes. In addition, it formed the foundation for legal and political arguments about the principle of equality. Most dis­ a bled people simply wanted 'to level the playing field' . They did not seek special favours. They wished to gain the same rights and privi leges that

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had been granted to non-disabled citizens. They sought only to be treated equally. Many disabled Americans identified discrimination as the principal problem that t hey confronted in everyday l i fe. This perception was fou nded on several sources of information. First, a large proportion reca lled specific encounters in thei r lives w hen non-disabled persons had displayed unsophisticated and blatantly prej udicial attitudes. Be­ cause they had been told that they lived in a world where such opinions were virtua lly non-existent, t hese i nc idents were especially salient and hurtfu l . The assumptions that shaped their behaviour had been suddenly destroyed. They frequently felt vulnerable and defenceless. Similarly, some disabled people analysed factors such as circumstances and non­ verbal behaviour to for m an interpretation in which their disabilities represented the only possible explanation for rejection or animosity. The expectation of a few acti vists that the prohibition of discrimination would yield equa l or i mpartial treatment for disabled people, however, was soon shattered. Finally, there is definitive empi rical evidence of unfavourable a ttitudes towards disabled people in the research literature of the social sciences. While the dominance of a medical model of disability - as well as the absence of survey questions a bout visible or la belled traits that might elicit p rej udicial reactions - precluded further analyses of this issue, the early psychological experiments by Kleck ( 1 966) and the sociological studies concluded by Richardson ( 1 970 ) and by Richardson and his colleagues ( 1 96 8 ) provided strong and inci­ sive data about a ttitudes toward disa bled people that could be cited to build a persua s i ve case against bi as and discri m i nation (Hahn 1 99 6 ) . The quest for equality a roused intense covert resistance from the non­ disabled majori ty. Some opponents simply felt that disabled people were biologically inferior. According to this bel ief, since disa bled citizens did not possess the same a b i lities as their non-disabled counterparts, critics were not prepared to recognize that the a lleged i nequality of disa bled persons was spawned primarily by a disabl i ng envi ronment instead of bodi ly impairments. While few so-called 'experts' seemed willing to claim publicly that disab led people were biological ly i n ferior, the lack of a definitive refutation of this allegation fuel led lingering suspicions. Part of the hidden opposition to the goa ls of disabled people also reflected a dawning realization that, if major features of the a rchitectural and communications environment were no longer regarded as fixed or unaltera ble, the granting of equal status to disabled citizens would entail major expenditures . Unlike changes that had been achieved by other minority groups, the agenda of the disability rights movement carried a high price tag. I n order to fu lfil the promise of equal rights for all persons,

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the i nclusion of disabled citizens i n many facets of society required a sizeable allocation of economic resources. Both social instituti ons and physical structures would need to be changed permanently. Many en­ trenched i nterests recognized that spendi ng increased funds to gain equal rights for disabled citizens necessa rily meant that less money would be available for other purposes. Most of the organizations that were secretly opposed to the objectives of disabled people, however, did not proclaim their resistance either in legislative chambers or i n corridors haunted by l obbyists. They were probably influenced by the phenomenon of paterna lism, which prevented non-disabled professiona ls and others from calling attention to the ad­ vantages they enjoyed as the alleged protectors of disabled people ( Hahn 1 9 8 3 ) . Because of historical traditions that had defined disabled people as the 'deserving poor', the disabi lity movement was enmeshed in a legacy of charity. Most non-disabled observers cla imed that they were sympathetic to d i sabled people, even if they did not actively support their objectives. Paternalism implies that benefits for disabled people are mo­ tivated by private philanthropy instead of government decision making. Prevailing assumptions about charitable sentiments placed disabled people in an unequal and subordinate position, where they could expect support only from personal benefactors, not from the government or from themselves. Paterna lism also prevented the emergence of opportun­ ities for compromise or a healthy debate concerning disability pol icies. Since everyon e appeared to favour increased rights for disabled people, the relative a bsence of conflicting opinions about solutions to the prob­ lem stemming from disability reduced the prominence of these issues. Poli ticians were rel uctant to admit to the i r wnstituents that they had voted against rights for d isabled people. Most of the bills endorsed by the disability rights movement were passed without major opposition and by overwhelming legislative majorities . Instead, as evidenced by the failure to sign the regulation for Section 5 04, most of the hidden disagreements about disability rights were revealed by official inaction concerning the implementation and enforcement of these laws. Decades a fter the accept­ ance both of the legislative provisions a nd of administrative rules that later accompanied them, observable evidence reveals pervasive n on-com­ pliance in many US communities with legal mandates to provide access­ i ble facilities and programmes for persons with sensory and mobility impairments. The preval ence of paternalistic sentiments, however, produced a situ­ ation in which many members of Congress were prepared to extend and e x pa nd legal rights. Disabled people were finally granted protection agai nst discrim ination i n the private sector as well as with in e ntities

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rece i ving 'substantial Federa l financial assistance' that were covered by Section 504. Under the leade r shi p of Senator Tom Harkin from Iowa, the Americans with Disabi lities Act ( ADA) was passed and signed by the President in 1 990 . The approval of this statute, which was the only measure to be endorsed by a conservative administration, seemed re­ markable in many respects . The legislative history of the bill suggested that Congressional representatives who voted for the law also appeared to understand the social model of di s a bi l ity and the need to combat the discri mi nation imposed by a d isabling environment . Most legal and other commentators anticipated that the princi pa l controversy regarding the ADA wou ld revolve around the clause requiring ' reasonable accommo­ dations ' in employmen t, public accommodations and other areas of eve r yday l i fe ( Hahn 1 993a ) . Thi s was the first legal provision to impose an a ffirmative obligation upon members of the dominant majority in order to bestow equal rights on a d i s ad v antaged group. Despite the p otential threat that s uch mandates could be subverted either by inaction or by escalating opposition, many activists in the disabil ity movement felt that they had achieved another unqualified v ictory. The path to securing equal rights for disabled Americans was amply buttressed by available literature i n disability studie s . Extending the arguments implied by the socio- p olitical definition and the concept of a disabling envi ronment, for example, I (Hahn 1 98 7a, 1 9 93a , 1 994, 1 996, 1 9 97a) p roposed a 'minority-group model ' for the study of dis­ a bil ity. From this pers pective , the problems faced by disabled citizens are essentially similar to the difficultie s encountered by other minorities. The basic issues are pre j udice and discrimina tion evoked by visible or labelled human di ffe re nces ( Hahn 1 98 8 ) . Like other physical traits indicating age, race or ethnicity, and gender, the principle features differentiating dis­ abled a n d non-disabled persons are frequently obvious and percepti b le to others. In addition, visible characteristics signifying a d isabi lity usua lly a re devalued. On other occasions, evidence of a so-called ' hidden disabil­ ity' may be found only in dossiers, files a nd other sources containing information from m e dical reco rd s , employment applications, insurance forms a n d similar s ources. Non - dis a bled p e o p le , of course, often react to both visi b le and labelled attributes of disabled individuals. T hese phe­ nomena have prevented an explicit test of the 'minority-group model'. Ne vertheless , there are strong reasons to believe that adverse reactions by non-disa bled persons comprise the basic sou rce of the problems of disabled peopl e. As a resu l t , like other minorities, disa bled c itizens have been plagued by social inequali ties such as extraordinarily high rates of unemployme n t , poverty and wel fare dependency; school segregation; i nadequate housing and transportation; and exclusion from many publ ic

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facilities that appear to be reserved excl usively for the non-disabled maj ority ( Bowe 1 978 ). Moreover, laws prohibiting discrimination on the basis of disa bility appeared to be the primary remedy for t hese obs­ tacles. O ne of the last remaining obstacles to the quest by disabled people for equal rights entailed the interpretation of anti-discrimination laws by the judicial branch of government. The fi rst Supreme Court contro­ versy involving Section 504 of the Rehabil itation Act of 1 973 appeared to be a harbinger of future events. In 1 979, by refusing to reverse the decision of a community college to deny admission to a nursing student beca use of her hearing impairment, the j udges concluded that accommo­ dations for disabled people could not ' fundamentally alter' the nature of a public programme ( Southeastern Community College v. Davis, 442 U . S . 397) . In Cleburne v. Cleburne Living Center (473 U.S. 432), a 5-4 decision by the j ustices held that discrimination against disabled Ameri­ cans would not be struck down unless the acts violated the minimal co nst i tut ional standard of 'reasonableness'. Although this 1 9 8 5 case invalidated a municipal ordinance banning 'group homes' for persons with developmental disa bilities in residential neighbourhoods on the grounds that it was 'unreasonable', the finding seemed to imply that only the most blatant acts of bigotry and i rrationality would be invalidated by the courts. Under the leadership of Chief justice William Rehnq u i st, the Supreme Court also nullified a Bil l of Rights for developmentally disabled people in 1 9 8 1 ( Pennhurst v. Halder­ man, 45 1 U . S . 1 ) a nd equal e ducational opportunities for disabled students in 1 98 2 ( Rowley v. Hudson Central Board of Education, 45 8 u.s. 1 76). Perhaps more importantly, most appellate courts continue to subscribe to a 'functional lim itations' rather than a mi n or i t y group' model of disability. The crucial pa rts of Section 5 04 and the ADA which prohibit discrimination against 'otherwise qualified' disabled individuals were interpreted in a highly re s t ri ct i ve manner by US cou rts. The j udges appeared to think that if plaintiffs a lleging discrimination were d isabled, they could not be 'otherwise qualified' . Conversely, of course , if they were 'otherwise qualified,' they could not be disabled. By the end of the twentieth century, the misunderstanding of disability in A merican law was so grievous that some disabled researchers began to u rge the movement to a bandon a strategy based solely on lawsuits and to explore other means of seeking political objectives ( Hahn in press) . After nearly forty years of litigation, the courts seemed reluctant to heed the plea of Jacobus tenBroek ( 1 966) to grant disabled people 'the right to live in the world'. '

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The pursuit of p olitical and conceptual alternatives Increasing disillusionment with the legal process prompted many disabled researchers and activists in the USA to pursue alternative means of fulfil­ l i ng their aspirations. In addition to litigation, another major objective of the disa bility movement has revolved a bout strategies to enhance the political influence of disa bled citizens. Eventual ly, a signi ficant proportion of disabled people appeared to begin to consider the struggle to i mprove their status in society as a more sign ificant aspiration than their own personal rehabilitation. The first national survey of disabled Americans d i sc losed in 1 9 86 that the largest percentage felt that disabled persons are 'a minority group in the same sense as are Blacks and Hispanics ' ( Harris 1 9 86: 1 1 4 ) . The fundamental goals of the disa bil ity movement are nearly identical to the aim of other minorities. They are striving to improve their status in society. They want to achieve gen uine equality, or parity between the privileges afforded disa bled and non-disabled citizens. In addition, the tactics adopted by disadvantaged groups, which range from community organizing to non-violent civil disobedience, are essentially similar. Per­ haps the primary differences between the experience of disabled people and other minori ties are reflected in the residual effects of medical con­ cepts that have been inherited from earlier studies of disa bility.

Quality of life In many respects, the search outside the court-room for methods of improving the status of disabled people seemed to converge with a growing interest in the consequences of health care_ Increasingly, d octors became discontented with a conti nual - a nd a l most exclusive - emphasis on refining their proced ures and forms of treatment. In a period of growing medical costs and fiscal stringency, the emphasis on the effects of professional intervention promoted intensified attempts to measure health ca re outcomes. This trend coincided with a mounting demand to scrutinize the cond uct of professiona ls (Haug and Sussman 1 96 9 ) . In addition, lega l restrictions prompted by the exposure of grave violations of ethical princi ples compelled health professionals to secure the consent of the cl ient before em barking on most interventions ( Rothman 1 9 9 1 ) . The first attempts to assess the satisfa ction o r dissatisfaction o f patients or cl ients were, of course, denounced as too subj ective by medical re­ sea rchers. Th us, scienti sts began to search for other methods of analysing the consequences of the i r practices.

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The barriers to the study of hea lth care outcomes for disabled people seem to be especially formidable. By definition, of course, impairments are usually permanent. The purpose of medica l rehabil itation is not to eradi­ cate a functional problem. Despite the desire of many physicians to 'fix' what they view as unacceptable bodi l y anomalies, often the most that can be e xpected from a lengthy process of rehabilitation is the arrest of a steady deterioration of physical or mental attributes. ' Cure', or even the amelioration of chronic c on d itions, is usually not a viable prospect. Resea rchers ca nnot easily measure improvements in such characteristics. Although some studies have attempted to appraise personal improve­ ments, a great deal of research on outcomes has consisted of investigations within separate diagnostic categories. From the perspective of disability studies, however, dia gn ostic classifications may be of limited value . While they may help to identify usefu l i nformation about the aetiology or cause of impairments for planning prevention strategies, they provide little data either about the functiona l status of a disa bled individual or about the presence of traits that may spawn prej udice and discrimination. Finally, the standards posed by ' quality of life' have often been invoked to the detriment of d isabled people . One of the first v ersi o ns of the notion of 'quality of life', for example, appeared in the 'bioethical' for­ mula: QL NE x ( H + S), where NE is natural endowment, H is home, and S is society ( Shaw 1 977) . However, within the same society, S drops out of the equation, so QL NE x H. In other words, where people in society are treated similarly, 'qual ity of life' is determined by 'natural endowment' times the influence of the 'home ' . And the ' home' vari able generally reflects the inheritance from parents and opportunities sha ped by socio-economic status. To put it simply - and, some might claim, crudely - non-disabled rich people enjoy a higher 'quality of life ' than persons who are poor and disabled. The 'formula ', therefore, merely becomes a tautology. Nourishment and water have sometimes been with­ held from disa bled infants and adults, who a re 'allowed' to die because the prospects for their lives do not meet the expectations of medical practi­ tioners . In addition, relatively few studies have focused on the social participa­ tion of disabled people a fter they leave hospitals or rehabilitation facil­ ities. In fact, a n investigation employing the Craig Handicap Assessment and Reporting Technique (CHART) discovered no relation between the community reintegration sub-scale and other predictors of rehabili­ tation effectiveness. The Harris survey ( 1 986: 37-4 1 ) found that disa bled people were much less likely than their non-disabled counterparts to engage in everyday activities such as shopping at supermarkets, eati ng at restaurants, attending concerts or seeing films, and visiting ne ighbours ==

==

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or friends. In fact, m uch of the isolation and excl usion of disabled people can be a ttributed to the prevalence of architectural and communications barriers, even where they are prohi bited by law, that frequently prevent them from leavi ng their own dwel lings or 'back bedrooms' . The increasing realization that disabled people might sometimes need to move beyond their homes and enter the outside world gradually encouraged the development of measurements that departed from strictly clinical assessments by encompassing the external environment. One of the fi rst significant steps in this direction was taken when the Inter­ national Classification of Impairments, Disabilities, and Handicaps ( !CID H) was publ ished by the World Health Organization ( 1 980). This

classification scheme included a separate category called 'Handicap', for ' a disadvantage . . . resulting from an i mpairment or a disability, that lim its or prevents the fulfillment of a role that is normal (depending on age, sex, and social and culture factors) for that individual' (WHO 1 980: 1 83 ) . While some disabled leaders viewed this category as an opportunity to col lect important data about environmental accessibility, others felt that the ICIDH signified the first wave of a renewed eugenics movement (Pfeiffer 1 99 8 ) . One valu a ble by-product of the ICIDH, however, was a model that i ncorporated envi ronmental dimensions in plans for research on disability ( Fougeyrollas et al. 1 998 ) . Final l y, environmental compon­ ents of research on disa bility were featured prominently in an important Institute of Medicine ( 1 997) report on rehabilitation science and engi n­ eering. Despite these indications of gradual progress toward the accept­ ance of measures that woul d incorporate environmenta l as well as intra - personal varia bles in assessing health care outcomes, most medical reha bi l itation professional s preferred to engage in arduous and ofte n futile attem pts to operational ize a concept such as 'quality of life' that allegedly could be related in a more direct manner to clinical eval uations of indi vid ual functioning. A review of articles containing 'qual ity-of-life' instruments disclosed troubling inconsistencies. Within a relatively short period o f time, however, research and publications on measures of Health-Related Quality of Life ( HRQOL) e xpanded profuse ly. Many of these conceptualizations were promoted by i nternational scientists such as the WHOQO L G roup, the EuroQOL Group, REAVES (the International Network on Health Expectancy and the Disability Process ), and sim i l a r informal as wel l as formal organizations. Reiser ( 1 993 ) noted that interest in the perceptions of the so-called 'patient' and the appraisal of 'quality of life' eventually converged . Another major impetus for the increasing popularity of so-called qual­ ity of l i fe measures emerged, ironica lly, from trends in the soc ial sciences. Prominent researche rs in the 1 960s who witnessed dramatic outbreaks of

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ghetto vi olence prompted by long-standing grievances bega n to dream about the possibility of conducting periodic surveys to gather data on 'social indicators' similar to the econom ic i ndicators that had been used so successfully as a basis for fiscal policy. Drawing upon Cantril's ( 1 96 5 ) studies o f 'self-anchoring sca les', in which respondents were asked to indicate their position on a ten-rung ladder representing the best ( top) and worst ( bottom ) life they could lead, social scientists sought to fashion instruments that could be used longitudinall y in frequent surveys ( Campbell et al. 1 976 ) . Along with employment a nd family life , health was consistently rated throughout the world as one of three principal human concerns. Perhaps the major d rawback s to the 'social indicators' movement, however, entailed both the difficulty of applying them in a determin i stic manner to complex phenomena such as urban uprisings and the i nability to find a funding source willing to invest as much in social problems as it spends on econom ic forecasts. The proliferation of the so-called health-related quality of life meas­ ures, however, seemed desti ned to continue una bated. Biomedical scien­ tists appeared to stumble over themselves in a frantic rush to discover a composite indicator of health outcomes, both to satisfy the demands of administrators who sought to end escal ating costs and to attract a consen­ sus a mong professional colleagues that could yield personal rewards for the i nventor of such an instrument. The inappropriateness of the use of such scales in the study of disability is indicated by evidence revealing that disabled people tend to rate the quality of their lives h i g he r than most non-disabled individuals (Aibrecht and Devlieger 1 99 9 ) . A sign i fi­ cantly disabled psychotherapist reported that many of her clients who were almost comatose derived pleasure from 'the sensuous touch of the sheets on the skin ' . Most HRQOL assessments, however, were based on clinical definitions that restrict the measure of observable differences in outcomes to organic conditions within the human body. Implicit within these measures is the incorrect and unspoken assumption that ' q uality of life' is a direct, unmediated reflection o f physiological traits, and that impaired people m ust, therefore, experience a lower quality of life than individuals without bodily impairments. Despite the supposed familiarity of health professionals with the controversy about the so-called handicap dimension of the International Classification of Impairments, Disabil­ ities, and Handicaps, these scientists were reluctant either to extend their research beyond the physiological boundaries of the body or to admit researchers from other disc i p linary traditions i nto the exclusive province of medical investigations. As a result, social or environmental measures were neither accepted as a supplement nor appended to the clinical o r biomedical mode l .

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Continual reliance on the c linical approach in nearly all branches of the health sciences imposes additional restraints on the progress of such investigations . The well-established standards of 'universal design' or an accessible environment for disabled people were never added to the 'med­ ical model'. For many disabled persons who actually know that their organic conditions cannot be ameliorated and for health practitioners who rea lize that they cannot 'fix' or repair such i mpairments, changes that make the surrounding environment more accessible may represent the only feasible means of improving major facets o f life, including their mobi lity, navigational skills, community participation and opportunities for socia l interactions with families, neighbours and friends. Without a n accessible environment a n d public o r private transportation, many dis­ a bled people are condemned to l ive indefinitely either i n institutions or in thei r own domiciles and 'back bedrooms', where they remain vi rtually inca rcerated without any real chance to interact with other human beings. Disabled people are seldom confined to wheelchairs, but often they are confined to nursing homes, residential institutions, houses or apartments. They a re freq uently barred from obta ining needed health care or social services simply because architectura l or communication barriers prevent them from 'getting from here to there' . The persistent adherence to a clinical perspective that has excluded the accessibil ity of the environment from ana l ysts of ' health-related quality of life' has prevented researchers from exploring many significant issues. O bviously, the most important advances in human m ortality have resulted from environmenta l rather than cl i n ical changes, through improved sanitation and rel ated policies adopted in nineteenth-century cities. As organi zed medicine acqui red increasing power in the twentieth century, however, the domi nant em­ phasis in health a ffa irs shifted from the analysis of public policies that affect large numbers of people to the refinement o f clinical techniques performed on ind ividuals. As a result, the major unit of analysis in health-rel ated research reflected a corresponding tendency to move from aggregate entities such as governmental jurisdiction to the free-standing individu a l . This trend has h a d t h e u n fortunate consequence of inhi biting the development of adeq uate measures for rigorous examination of the impact of gove rnment policy on pu blic health. Analyses of such pol icies and programmes have not been fully or effectively integrated i nto the study of health services. At least, this research literatu re has not provided politica l leaders with clear gu idance about the best means of improving public health. These lacunae h a ve had a detrimental i m pact on disabled peopl e. In pa rticu lar, the a bsence of such i nvestigations has impeded the ability o f resea rchers to a n swer many crucial questions.

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Do disabled residents of communities that strictly enforce laws requiring accessible public accommodations, for example, enjoy i ncreased social interaction and pa rticipation in comparison with counterpa rts who live in local i ties that have not fully implemented such stat utes ? Such an investigation would clearly seem consistent with the 'assessment' func­ tion of public health. Does the reduced social i solation and confinement that may presumably result from such legislation have a positive effect on personal health or longevi ty ? The u s e o f traditional methods t o examine 'health-related quality of life ' , however has a lso confronted two other obstacles. What is 'health' ? What is 'quality'? The first iss ue, of course, revi ved debate a bout the WHO definition of health as a state of complete physical, mental and social well-being, rather than simply the a bsence of disease. This formu­ lation has frequently been attacked as too idealistic . For many years, few, if any, prominent schola rs devoted their work exclusively to the sea rch for a more practical meaning. Most theoreticians and practitioners seemed content to allow health to be defined by an i n d i vidual need which represented a deficiency from a condition that was often approxi­ mated by a bell-shaped curve or some notion o f 'normal ity ' . Such a conceptualization appeared to work reasonably well in a period domin­ ated by acute problems, in which the su bjective apprai sal of signs or symptoms represented need, and a cure was the desired outcome. In this paradigm, of course, disabled people were usually perceived a s individ­ uals w ith deficienci es from a customary norm, or as 'outliers' on a bell­ shaped curve, who could not be helped by con ventiona l techniques. Gradually, as predominant health concerns shifted from acute to chronic difficulties, 'cure' no longer represented a feasi ble outcome. In fact, disabled participants i n civil disobedience who tended to express favour­ able attitudes a bout many of their experiences with disability a lso stated that they would rej ect a 'cure' , even if it were offered to them ( Hahn and Beaulaurier, in press ) . The change from predominantly 'acute' to 'chronic' health problems meant that researchers had to redefine both ' need' and outcomes as practicable objectives. People with chronic conditions frequently seek health care for second­ ary conditions, but may seldom 'need ' medical treatment because of permanent impairments . Often the most that doctors can do for disabled individuals is to treat ordinary health problems or to monitor increases or decreases in functional capabilities. Full cognizance of the implications of these c ircumstances may require a significant redefinition of common medical objectives. For many years, such goa ls have revolved around the implications of morbidity and mort a lity. In the modern era, however, chronic limitations cannot be eliminated. Even though people with

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chronic health prob l em s can survive, the ful l restoration of 'normal' functioning i s usually not a viable prospect. A crucial question that appears to emerge from these trends, therefore, might be stated as fol l ows: If 'cure' is not an appropriate goal of medical intervention in chronic health problems, what can disabled people reasonably expect from health professional s ? What should health professionals expect of themselves ? How can their efforts be measured ? What are the criteria for success or fai l u re ? Possible answers to such questions have not yet reached the level of extensive public discuss i o n Some disabled people have urged that rigid evaluations need to be applied to professional conduct in order to p re v e nt further damage, and a few have even proposed that the goal of 'fixing' impai rments be a bandoned so that physicians and scientists can concen­ trate excl usively on the aim of extending life. Most non-disabled people still appear to believe that they must consult medical experts when a disabling incident occurs or, at least, that few other service providers can effectively engage in these activities. And the demand for norms or cri teria regarding the performance of these duties seems almost inevitable. Even m ore fu n damentally, there seems to be a pressing need to revamp the theoretica l fra mework i n which the standard of 'quality of life' initially emerged. The basic precepts of the principles of utilitarianism are, of course, guided by the familiar maxim about 'the greatest good for the greatest n u m ber'. Almost by definition, since disabled people are proba bly destined to remain a m inority for several decades, they are not likely to benefit from the application of judgements based on such logic. Uti litarianism ap pears to fit most comfortably in a legal context of indi vidua listic choice based on the concept of l i berty rather than the standard of equality. In addition, choice often i mplies a trade-off between people or goods of greater or lesser value. Thus, health care practices that yield the most benefit for the largest number of people ordinarily can be expected to provide rewards primarily for the non-disabled segment of the popu lation that fits in the area under the 'norm a l ' curve within a fraction of a standard deviation from the mean. Perhaps even more fundamentally, utilitarian concepts have been adopted as a foundation for cost ben e fit' or 'cost-value' calculations, yie ld ing an outcom e that j ustifies neglect of the needs and i n tere s ts of disabled citizens. The cle a rest example is the concept of DALYs, l iterally Disability Adjusted Life Years. This formu lation, which emerged fro m a proj ect sponsored by the World Bank, seemed to combine i ndices of mortality, or death, and morhidity, or 'a diseased state' of some kind, into a single measure of ' health' . Disabil ity is defined excl usively both as a negative factor that detracts from a health y life and as a form of ill .

'

-

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health that imposes a substantial 'burden' on society as well as the indiv idua l . Pa rt of the fallacy of this concept appears to reflect confusion about the concepts of disa b i l ity, sick ness or il lness, disease and impa ir­ ment. Disabil ity is neither a disease, a term that often stands for diagnos­ tic classifications, nor a sickness, a w ord that usually implies an acute health problem from which a pe rson can be expected to recover fully. Nor does it result excl usively from bodily impairments; in fact, disability is produced primarily by the effects of a disabling envi ronment. Disabil­ ity may be, i n p a rt , a chronic or persistent condition ; but, since environ­ mental configuratio n s are seldom unalterable, it can be mitigated or ameliorated especially through improvements in the architectural and communications mil ieux. It i s entirel y possible to have a significant disability and to be perfectly ' healthy' , in the conventional meaning of the term, simultaneously. DALYs not only signify an outdated notion; this measure also seems oddly i ncongruent in an era in which growing numbers of disabled people are beginning to consider disability as a positive source of personal a n d political identity, as well as an experience from which many valuable perspectives c a n be deri ved ( G roce et al. 1 999; Hahn 1 997a ) . Perhaps m ost importantly, DALYs pose a substantial danger to the lives and well -being of disabled people. As Nord ( 1 99 9 : 1 23 ) concl uded, this threat 'is a heritage from utilitarian thinking in the QUALY ap­ proach, in which . . . the equal v a luati o n of life for disabled people was not recognized as a salient societal concern'. The widespread use of DALYs and the inc reasing costs of medic al treatment could promote numerous life-threa tening plans, including a revival of the eugenics movement, the rationing of health care, and the lega lization of eutha­ nasia . For many disabled people, breat h i ng an atmosphere fostered by ideas that c haracterize ' a healthy life' as 'living without a disa b i l ity' has been permeated by t he stale, sweet taste o f death. Many disabled people have privately expressed the fea r that the paternali stic attitudes displayed by the non-d isabled may actually conceal u nacceptable feelings of hostil­ ity and repugnance that, if they were ever to become exposed, m ight be related to a repressed desire even to kill disabled people. O bviously, women would feel j ustifiably threatened by the preva lence of measures that weight life as a female as only a fraction of the value of the life of males. Yet, for rea son s which have not been fully uncovered and which c o m prise a pressing mandate for future scholars in disability studies, the general public does not display similar reactions w hen thi s formul a is applied to disabled people. Although the World Bank has cla imed that the DALYs score of a particular country will not be u sed as a basis for decisions a bout the extension or foreclos u re of loans, there is nothing to

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prevent other agencies from using the statistic in this manner. Many nations m ight curta i l social services to d isabled people in the belief th at fewer services might mean fewer disabled citizens, which would reduce costs and contribute to a higher DALYs measure, to convey the impres­ sion of a hea lthy and productive work-force. One example of the appli­ cation of these concepts to contemporary American policy was provided by e fforts of the state of Oregon to obta i n a waiver from Federal Medic­ aid standards by rationing health care on the basis of d i scriminatory priorities from a pu blic opinion survey that were deemed i nconsistent with the ADA (US Department of Health and Human Services 1 992). Eventua l l y, other political leaders may find it difficult, if not i mpossible, to resist the temptation to invoke such medical excuses, which were used during the Holoca ust to e xterminate m i l l ions of disabled people . Obviously there is a pressing need for an alternative method of meas­ uring adva nces toward the goals of the disabil ity movement. Experience in the United States has demonstrated that the principles of civil rights embodied in laws such as Section 504 and the ADA have been subverted by the reliance of the courts upon an antiquated functional u nde rstand­ ing of d isabil ity that has prevented disabled people from fulfilling the aspirations implied by this legislation. Moreover, the utilitarian suppos­ itions embedded in 'quality of life' measures have redounded to the disadvantage - and even to the l i fe-threatening detriment - of disabled people . Conseq uently, a high priority m ust be assigned in coming years to the search for objectives and strategies to replace concepts that have been exposed as antithetical to the i nterests of the d isa bility rights move ment. In fact, without a new agenda and priorities, the re is a danger that the move ment could flounder and lose its sense of purpose .

Empowerment:

an

alternative remedy

Perhaps one of the most popular recent strategies for soci al change has revolved a round the c oncept of empowerment. Unlike quasi-utilitarian notions that e m phasize princ i ples of l i berty and free choice a lmost to the exclusion of other values, empowerment seems to impl y at least an opportunity to consider the standard of equality. A fundamental goal of empowerment is to increase the i nfluence of re latively powerless sectors of soc iety. Since d i sabled people comprise a group that has been signi fi­ cantly disadvantaged by the envi ronment s urrounding them , empower­ ment would mean that they could eventually be elevated to a level commensurate with the benefits traditionally enj oyed by their non­ disabled counterpa rrs . The fi rst stage of the agenda, therefore, might be

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achieved merely by le vc ling the p laying field ' . Pa rt of this task would require that criteria take into account the so-called taken- fo r-granted environment that confers major pri v ilege s upon non-disa bled persons and corresponding disadvantages upon disabled people (Hahn 2000 ) . The disabi lity movem ent cannot become a ful l participant i n decis­ ions a bout the distribution of resources until this initial goa l is accom­ plished. There is, however, still considerable debate a bout whether the struggle by disabled people for equal rights is a zero-sum game. From one vantage point, resources may appear to be so plenti ful that the interests of a mi nority such as disabled Americans can be accommodated without disturbing the rewards that have previously been allocated to other segments of the population. By contrast, some analysts may contend that granting the demands of disabled citizens would enta il red istribution of resources that could require pol itical leaders to take privileges away from groups that traditionally have enjoyed them . The latter prospect obviously e ntai ls more political difficulties than the former scenario. Even when dominant i nterests display a supposedly sympathetic or pa­ ternalistic attitude toward disa bled people, there is still a strong l ikeli­ hood that powerful groups will not voluntarily surrender their traditional advantages for altruistic reasons. Since disabled people seem destined to remain a minority at least until longevity extends beyond existing pa rameters, it is also u nl ikely that they can fulfil a l l their aspi rations within the confines of a political system ba sed on the rule of the ma j ori ty. Certainly, there are some strategies that disabled people can pursue to enhance their i nfluence. Perhaps one of the m ost important of these is the effort to redefine disa bility as a positive source of identity instead of a trait enveloped by fee l ings of shame or inferiority. This way of e xpanding the constituency of disabled people admittedly rests upon the shaky premiss that votes count in free e lections, tha t the verdict of the electorate exerts some influence on the selection of government representat i ves, and that political institutions are capable of shaping the behaviour of fi nancial elites. Many Americans believe that all these myths were shattered by the presidential e lections of 2000. But, in a supposedl y d e mocratic country, politics appears to remain the only pos­ sible means by which ordinary people can seek to shape the policies that affect their l ives. The mobi lization of alienated citizens has not yet seemed to emerge as a viable option. In addition, leaders of the disability rights movement must a lways be m indful of the possibility of improving the status of disabled people thro ugh sweeping changes i n the economic system. Capitalism is undou btedly a root cause of the oppression of disa bled people, and any act that diminishes the stranglehold of this '

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form of control on human behaviour must be counted as an achievement for the movem ent. Perhaps one of the most effective means of securing empowerment for disabled people, however, involves permanent systematic alterations in the decision-making process. Some local governments in the USA have attempted to augment the legislative strength of racial or ethnic m inor­ ities through devices such as proportional representation, which per mits the weighting of votes and sometimes the recounting of ballots based on second or third choices after win ners with a specified number of fi rst choices have been selected. Other l ocalities have experimented with cumu lative voting, which al lows the electorate to distribute votes for cand idates in various combinations in order to maximize the strength of their preferences ( Guinier 1 994) . Yet these measures were frequently repealed after their consequences were revealed, and they have seldom achieved the desi red results. Unl ess the strivings of disa bled people have a continuing effect on the political and economic institutions of a nation or the globe, they may never exert an impact that extends beyond a tempor­ ary and consta ntly shifting score-card of wins and losses. Animus toward disabled people seems to be an endemic and deep- seated characteristic of most cultures of the world. Thus, the battles of the disability movement cannot be waged solely within the confines of the existing political process; they must also seek to impose an imprint on the structure of society. In add ition, and perhaps most importantly, the empowerment of disabled people must be permanent. In a legacy within socia l work that has been perpetuated by early works a bout community organizing, em­ powerment is frequently equated with a temporary intervention into a neighbourhood or loca lity that is intended to have lasting and sustained effects. Ironica lly, pol itical science, as a disci pline that is supposed to be concerned with the issues of power, m i n ority rights and majority rule, has devoted relatively little attention to the concept of empowerment. Studies by Browning, Marshal! and Tabb ( 1 98 4 ) have suggested that local ethnic groups are often able to satisfy their political goals through governing coal itions; but a nother investigation indicated that the empowerment of disadvantaged groups may be relatively short-lived a fter t he election of a minority candidate to high public office (Gillam 1 99 8 ) . Perhaps t h e principal countries in which disabled people have been granted the greatest opportunity to pa rticipate in government dec i si on making, however, are Uganda and South Africa. Although Western law­ makers may be unwil ling ord inari ly to accept recommendations born in developing nations, increased attention might be devoted to j ustifications for the creation of seats on loca l cou ncils that are reserved for represen­ tatives of disadva ntaged groups, inc l u d i ng disa bled people. Democ ratic

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gove rnment must be concerned not only about majoritarian rule; it must also d iscover mechanisms by which gro u ps such as menta l ly and physic­ ally disabled people, ex -conv icts and others who have been a lmost per­ manently excluded from the political process may be able to secure official recognition of their needs a n d interests. Details of this proposal, such as decisions about the citizens who wou ld participate i n the selec­ tion of representatives, as well as the qualifications of office-holders who would occupy these seats, could be negotiated after governments endorse the principles of the plan. By seeking a voice on local councils, disabled people would not be asking for pity or charity. Instead, they would be seeking to become ful l participants in political decision making on an equal basis with the non-disabled portion of society. As a result, estab­ lishing seats to represent disadvantaged and marginalized groups should also be rega rded, at least in the USA, as an effort to fulfil a frequently neglected commitment to diversity and i nclusion.

Conclusion D i sabled people, like other minorities, have followed a long and some­ what tortuous path toward full inclusion in soc i a l , economic and polit­ ical structures. They have been told that they must complete long a n d seemingly senseless rehabilitation programmes i n order t o work; a n d later they were granted public benefits for not working. M a n y disability policies in the n ineteenth and early twentieth centuries were designed to support groups such as Republican Congressmen , who sought to re­ inforce the loyalties of Civil War veterans with specious assumptions about the link between ageing and disabil ity a l m ost twenty years a fte r the war. Similarly, the conflict between labourers and business interests that were willing to support workers' compensation laws to protect themselves from the dangers of crude machinery and the potential liabil­ ity that could result from a shi ft in prevailing legal doctrines about employer responsibilities. Rehabilitation measures, of course, were intro­ duced after World Wa r I in part to avoid the embarrassment of un­ employed disabled veterans begging on city streets. Subsequently, however, employers were permitted to continue the discriminatory prac­ tice of using questions on employment applications or visible evidence from interviews to sort out - and to reject - disabled workers seeking jobs; and the unemployment rate for disabled workers has held consist­ ently at approximately two-thirds. Only during World War 11, when most young non-disabled males were i n military service, were disa bled people adm i tted to the l a bour force, ordinarily through the wa iver of medical

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requirements. After this war, disabled veterans were offered medical rehabilitation to 'fix' thei r impairments; and disabled civilians i n voca­ tional reha bilitation were told by psychiatrists and administrators that their inabil ity to find jobs could be ascri bed to a lack of psychological 'adj ustment'. In addition, Congress finally enacted social wel fare policies to provide SSI and SSDI payments to disabled people who were declared to be 'unable to engage in substantial gainful activity'. The relatively abrupt shift to civil rights remedies began w ith the adoption, almost as an afterthought, of Section 504 of the Reha bilitation Act of 1 973 . Perhaps even m ore importa ntly, the failure of several administrations to sign regulations to implement the law, prompted a series of sit-ins and protests that contri buted significantly to the birth of the disability movement in the USA. Ea rly indications of unremitting judicial attempts to undercut such laws were revealed by an initial Supreme Court case in which a hearing-impa ired nurse was denied acceptance by a community college programme on the grounds that her admission would result in a 'fundamental alteration' of the curriculum. Despite such forewarnings, Congress continued to pass even more strin­ gent bans against disa bility discrimination, including the Individuals with Disabilities Education Act (IDEA), the Ci v i l Rights Restoration Act and the Americans with Disa bilities Act (ADA). In subsequent litigation, however, the Court decided that disabled people were not entitled to a strong defence against discrim ination under the 'equal protection' clause of the Fou rteenth Amendment to the US Constitution; that a deaf student who was merely passed by her teachers was receiving an 'appropriate' education, e ven though she may not have been able to learn what was being said in the classroom; that disabled people in i nstitutions may not claim 'habilitation' or other minimal forms of training; and that a Bill of Rights for developmentally disa bled people was not really a 'bill of rights' after a l l . Plainti ffs were frequently caught in a dilemma by j udicial interpretations of statutes prohibiting discrimination aga inst 'otherwise qualified' disa bled individuals a nd, if they were 'otherwise qualified', they could not be d isabled. Similarly, numerous a ppellate courts have refused to a pply the ADA aga inst employers who fi red personnel sus­ pected of having AIDS merely because they did not have the symptoms of the disease . Many of these results could be attributed to j udicial under­ standings of the functi onal thrust of the defin ition of disabi l i ty in A DA. Although this cla use a l so prohi bited discrimi nation against persons who are 'regarded a s' having a disa bility or who have a 'history' of d isabi lity, courts have viewed m edica l evidence of a functional impairment as an essentia l pre-cond ition for lega l findings a bout disabil ity. Perhaps at least part of the e xpla na tion for this i n te rpretation can be a scri bed to the

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absence of data based on the visible or label led cha racteristics of a disability. Visi bility and labell ing can be operationalized, and informa­ tion a bout these attributes would not be difficult to collect; but neither the government nor private foundations ha ve exhi bited much interest in funding the surveys. Once again, public policies can be traced to the availability of research findings and to the theoretica l or conceptual orientations that guide such investigations. The strong popular interest in quasi-utilitarian concepts of 'quality of l i fe' that emerged during the l a tter part of the twentieth century, along w ith a mounting c oncern for measuring the costs and outcomes of health care, prompted a relatively detai led analysis of the effects of this approach on d isa bled people. Thinly concealed within this perspective, for example, a re majoritarian assumptions that tend to treat disabled people as 'outliers' or deviants from the norms prescribed by a bell­ shaped curve. Perhaps even more significantly, utilitarianism seems to be an inappropriate source of measurements related to disability or chroni c health conditions. Emerging from an era in which the signs or symptoms of acute sickness indicated a need for medical treatment, the difficulty of measuring outcomes has been exacerbated by the preva­ lence of chronic problems which denote the absence of such a 'cure' and the persistence of the condition. Perhaps the most dangerous aspect of 'quality of life' measures involves their use in 'cost-benefit' or 'cost­ value' calculations, in which the worth of disabled people is purposely diminished in rel a tion to non-disa bled persons. Another manifestation of the inordinate stress on 'quality of life' is revealed by the invention of so-called DALYs, which purport to measure 'health' by subtracting the number of years lived with a disability from the longevity of individ­ uals. Such concepts have provoked a major fear among disabled people about a possi ble resurgence of eugenics, euthanasia and the rationi n g of health. The defects of existing conceptualizations have sparked a new search for a replacement for prior methods of assessing the status of disabled people. In this analysis, the principle of 'empowerment' is proposed a s an excellent potential replacement for earlier measures. Unlike utilitarian notions that emphasize c hoice almost to the exclusion of other values, empowerment also encompasses an opportunity to examine the issue of equality. In fact, empowerment i s often characterized by an increase in the social, economic and political influence of disadvantaged groups in relation to privileged segme nts of society. In fields such as social work, empowerment has tended to revolve around temporary interventions that are supposed to produce enduring effects. Experiments with propor­ tiona l representation, cumulative voting and 'gerrymandering' have

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seldom produced the results desi red by their originators. But the pro­ spects for disabled people being able to satisfy thei r aspirations without systemic and permanent modifications of the decision-making process a re slight. The h igh levels of political participation displayed by d isabled people in Uganda and South Africa may provide a foundation for a debate a bout new arrangements such as the representation of d isa bled and other disadvantaged people through reserved seats in local councils. Both the dissatisfaction aroused by prior a pproaches and the promise indicated by untried plans demonstrate the need for a lively debate about the future of disabled people framed by innovative approaches to the controversy.

REFERENCES Abberley, P. 1 9 9 3 : D isabled people and 'normality' . In J . Swain, V. Finkelstein, S . French and M. Oliver (eds) , Disabling Barriers - Enabling Environments, London: Sage, 107- 1 5 . Albrecht, G. l . and Devliger, P. 1 999: The disability pa rad o x : high quality o f life against all odds. Social Science and Medicine, 4 8 , 977-8 8 . Bickcnbach, J. E. 1993: Physical Disability and Social Policy. Toronto: University of Toronto Press. B ickenbach, j. E., Chattedi, S., Badley, E. and Ustun, T. B . 1 99 9 : Models of disablement, u n i versa l i sm, and the international classification of impairments, disabilities, and handicaps. Social Sc ienc e and Medicine, 4 8 , 1 1 73-87. Bowe, F. 1 978: Handicapping A merica: Barriers to Disa b led People. New York: Harper & Row. tenBroek, J. 1 966: The right to live in the world: the disabled in the law of torts. Califomia Law Review, 54, 84 1 -64. Browning, R. P. , Marshall, D . R., and Ta bb, D. H . 1 984: Protest is not Enough: The Struggle of Blacks a nd Hispanics for Equality in Urban Politics. Berkeley: University of California Press. Califano, j. 1 9 8 1 : Governing America: A n Insider's Report from the White House and the Cabinet. New York : Simon & Schuster. Campbell, A . , Converse, P. and Rodgers, W. L. 1 9 76: The Q ua lity of American Life: Perceptions, Eualuations, and Satisfactions. New York: Russell Sage Foundation . Cantril, H. 1 96 5 : The Pattem of Human Concerns. New Brunswick, NJ: Rutgers University Press. D i j kers, M. P. J. M., Whiteneck, G. and EI-Ja roudi, R. 2000: Measures of social outcomes i n disa bility resea rch . A rchives of Physical Medicine and Rehabili­ tation, 8 1 , supp. 2, 563-80. Erlanger, H . S . and Roth, W. 1 9 85: Disabil ity pol icy: the pa rts and the whole. American Behal'ioral Scientzst, 2 8 ( 3 ) , 3 1 9- 45 .

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Fougeyrollas, P., Norea u, L., Bergeron, H., Cloutier, R., Dion, S. A. , and St M ichel, G. 1 9 9 8 : Social consequences of long-term impairments and disabil­ ities: conceptual a pproach and assessment of handicap. International journal of Rehabilitation Research, 2 1 ( 1 ) , 1 27- 4 1 . Gillam, K . L. 1 998: I s there an empowerment life cycle? Urban Affairs R eview, 3 3 , 74 1 -66.

Groce, N . , Chamie, M., and Me, A. 1 998: Measuring the quality of life : rethink­ ing the World Bank's d isa bility adjusted life years. lntemational R ehabilitation Research Review, 4, 1 2-1 6. Guinier, L. 1 994: The Tyranny of the Maiority: Fundamental Fairness in Repre­ sentative Democracy. New York: Free Press. Hahn, H. 1 982: Disability and rehabilitation policy: is paternalistic neglect really benign ? Public Administration Review, 43. 385-9. Hahn, H. 1 98 3 : Paternalism and public policy. Society, 20, 36-46. Hahn, H . 1 984: The Issue o f Equality: European Perceptions of Employment Policy for Disabled Persons. New York: World Rehabilitation Fund . Hahn, H. 1 98 5 a : Changing perceptions of d isability and the future of rehabili­ tation. In L. G. Perlman and G. E Austin, (eds), Societal lnfluences on Rehabili­ tation Planning: A Blueprint for the Twenty-first Century, Alexandria, VA: National Reha bilitation Association, 53-64. Hahn, H. 1 9 85b: Disability and the problem of discrimination. American Behav­ ioral Scientist, 2 8 ( 3 ), 293-3 1 8 . Hahn, H . 1 986b: Public support for rehabilitation: the analysis o f U.S. disability policy, Disability, Handicap, and Society, 1 ( 2 ), 1 2 1 -3 7. Hahn, H. 1 987a: Adapting the environment to people with disabil ities: consti­ tutional issues in Canada. International journal of R ehabilitation Research, 1 0 (4), 3 6 3-72. Hahn, H. 1 98 8 : The politics of physica l di fferences. journal of Social Issues, 44, 39- 43 . Hahn, H . 1 993a: Equality a nd the environment: the interpretation o f 'reasonable accommodations' in the Americans with Disabilities Act . Journal of R ehabili­ tation Administration, 1 7, 10 1-6. Hahn, H. 1 993b: The political implications of disabili ty definitions and data . Journal of Disability Policy Studies, 4 ( 2 ) , 4 1 -52 . Hahn, H. 1 994: The minority group model of disability: implications for medica l sociology. In R. Wetz and J. J. Kronenfeld (eds), Research in the Sociology of Health Care, vol . 1 1 , Greenwich, CT: JAI Press, 3-24. Hahn, H. 1 996: Antidiscrimination laws and social research on disabilit}·: the minority group perspective. Behavioral Sciences and the Law, 1 4, 1 - 1 9 . Hahn, H , 1 997a : An agenda for citizens with disabilities: pursuing identity and empowerment. Journal of Vocational Rehabilitation, 9 ( 1 ), 3 1 -7. Hahn, H. 2000: Accommodations and the ADA: biased reasoning or unreason­ a ble bias ? Berkeley journal of Employment and Labor Law, 21 ( 1 ) , 1 66-9 2 . Hahn, H. (In press) Adjudication or empowerment: contrasting experiences with the social model of disability. I n L . Barton, (ed. ), Society and Disability.

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Hahn, H. and Bea u l a u rie r, R. (In press) : ADAPT or peris h : a research on inte r­ views with participants i n nonviolent prot ests . Journal of Disability Policy

Studies. Harris, L. 1 986: The /CD Survey of Disabled Americans: Bringing Disabled Americans into the Mainstream. New York: Louis Harris and Associates. Haug, S. and Sussman, M . 1 96 9 : Revolt of the clients. Social Problems, 1 3, 1 08-1 4.

Higgins, P. C. 1 992: Making Disability: Exploring the Social Transformation of Human Variation. Spr i ngfie l d , IL: Charles C. Thomas. Johnson, V. 1 999: Mobilizing the disabled. In J. F re e ma n and V. Jo hn so n ( eds ) , Waves of Protest: Social Movements since the Sixties, Lanham, MD: R o wma n and Littlefield. Katzmann, R. 1 986: Institutional Disability: The Saga of Transportation Policy for the Disabled. Washington, DC: B ro ok i ng s Institution . K lec k , R. 1 966: Emotional arousal in interactions with st i gm a ti zed pers ons . Psychological Reports, 1 9 ( 3 ), 1 226. L i ach o w itz, C. H . 1988: Disability as a Social Construct: Legislative Roots. Philadelphia: Un i ve rs i ty of P e n n s y lv a n i a Press. Nord, E. 1 9 99: Cost- Value Analysis in Health Care: Making Sense out of Q UALYs. New York: Ca m b r idge University Press. Obermann, T. E. 1 965: A History of Vocational Rehabilitation. Minneapolis: T. S. Denison Co. O live r, M. 1 990: The Politics of Disablement. Basingstoke: Macmillan. Olson, S. M. 1 9 84: Clients and Lawyers: Securing the Rights of Disabled Per­ sons. Westport, CT: G ree n wood Press. Pfeiffer, D. 1 998 : The ICIDH a nd its need for rev i s ion. Disability and Society, 13 (4), 503-23.

Richardson, S . A . 1 970: Age and sex differences in values toward physical handicaps. Journal of Health and Social Behavior, 1 1 ( 3 ) , 207- 1 4 . Richardson, S. A . and Ro yc e , ]. 1 968: Race and handicap i n children's p re fer­ ences for ot he r children. Child Development, 39, 457-80. Roth m a n , D . 1 99 1 : Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Making. New York: Basic Books. Scotc h, R. K. 1 984: From Good Will to Civil Rights: Transforming Federal Disability Policy. Philadelphia: Temple University Press. Shaw, A . 1 977: A short formula for q u a l i ty of life. Hastings Center Report, 5 ( 1 ) , 37- 43 . Shaw, R . 1 9 9 6 : The Activist's Handbook . Be r k ele y: University o f Ca l i fo rn i a Press. Skocpol, T. 1 992: Protecting Soldiers and Mothers: The Political Origin of Social Policy in the United States. C a m b r i d ge , MA: H a r vard University Press. Swain , j . , Finkelstein, V. , French, S. and Oliver, M . (eds) 1 99 3 : Disabling Barriers - Enabling Environments. London: Sage. US Department of H e a l th and Human Services 1 992: Press re l ea se , 3 August. World Hea lth Orga nization 1 9 80: International Classification of Impairments, Disabilities, and Handicaps. Geneva: World Hea lth Orga nization.

10 Globalization and Disability

Chris Holden and Peter Beresford

Our aim

has been

gap

between

The

to

r

b u i ld the global

economy

that leaves no one behind.

(Presidem Clinton, Warwick University, 1 4 Dec e m ber 2000)

ich

and

poor has g row n greater over the eight years of million more people are i n absolute poverty

his presi dency . . . Now 1 00

than

when he beca me president.

Barry Coates, Di rector, World Development Movement,

Channel 4 News, UK, 14 December 2000

Introduction In an extremely short space of time, the idea of 'globalization' has

become a key issue in national and international politics and policy. It has also become a central topic of debate in a range of socia l science disciplines. In many of these it has become the key topic of debate, and for some the central explanatory paradigm in understanding contempor­ ary social change. This chapter discusses what relevance debates about globalization in the social sciences may have for disabled people, how they are impacting upon policy a ffecting disabled people, and the impli­ cations this may have for disabled people and their organizations. We focus on the political economy a spects of globalization, and debates within the d i scipline of social policy about the impact of changes in the world market on the wel fare state.

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So far there has been relatively limited discussion o f global ization either in relation to, or by, disabled people. As we have a rgued elsewhere, there has been l ittle attempt to relate the d i scourses of globalization and of disabled people to each other ( Beresford and Holden 2000 ) . Yet, as we shall see, global ization clearly impacts powerfully on the lives of disabled people; i ncreasingly there are globalized responses to disability ( Stone 1 999: 7-9), and d i sa bled people and their organizations can be expected to challenge the na rrowly economistic way in which globalization has often tended to be presented . Just as disabled people made sense of disabil­ ity in the twentieth century through their analysis of industrial capitalism, so we may expect that an understanding of 'post-industrial' capital­ ism, incl uding globalization, will help make sense of disability in the twenty-fi rst century. The chapter begi ns with a brief summary of some of the economic changes which have been associated with global ization and the di fferent positions which have been taken on the significance of these within the political economy literature . We put these in context with earlier eco­ nomic developments and their implications for disabil ity global ly. We then move on to a discussion of the alleged effects o f the changes relating to globa l ization upon wel fare states a nd consider, i n particular, the significance of these debates for disabled people. Finally, we discuss changes in the nature of long-term ca re for older people a nd other d isabled people, stemming from the growth of private provision and the increasing internationalization of that provision .

The political economy of globalization 'Globalization' has now become a household term. The political econ­ omy aspects of globalization a re associated with the increasing i ntegra­ tion of the world economy. This has manifested itsel f through internationa l trade ( w h ich has been growing at a faster rate than world output for most of the post-wa r period ), foreign direct investment (FDI, w hich has been growing at an even faster rate than trade since the 1 980s), and world financial flows (where i nternational dealing in curren­ cies, shares and complex financial instruments has grown to unpreced­ ented levels) . However, commentators differ as to the significance of these developments. The di fferent positions taken by the various write rs have been grouped by Held et a l . ( 1 9 99) into th ree categories: the 'hypergloha l i ze rs' , the 'sceptics' a nd the 'transformationalists'. Hyperglobal izcrs tend to emphasize the extent of economic integra­ tion, arguing that the i ncreased mobi l i ty of ca pital has led to the

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supplanting of national econom ies by a genuinely single globa l ma rket. Multinational, or 'transnationa l', corporations can move across the globe with ease, searching out the most efficient outlets for investment and creating an international division of labour in the process. These corporations have no allegiance to nation-states, and are not su hject to control by them. Hyperglobalizers may be either neo-libera ls celebrating the triumph of unfettered capitalism or Marxists who oppose the e xploit­ ation and inequality which results from this. For neo-liberals such as Ohmae ( 1 99 0 ), globalization renders the nation-state effectively redun­ dant, a rel ic of a bygone age. Sceptics, however, question many of the assumptions of the hyperglo­ balizers. First, sceptics tend to argue that recent changes in the world economy represent a deepening of internationalization, rather than a qualitative shift towards a genuinely ' global' economy where borders are i rrelevant. Ruigrok and van Tulder ( 1 99 5), for example, conv incingly demonstrate that the majority of the world's largest fi rms reta i n a clear national base, despite significant overseas sales. Secondly, sceptics a rgue that the extent of internationalization in the contemporary world econ­ omy is no more than, and probably less than, that which existed in the period of the classical gold standard from the 1 870s up to World War I (Hirst and Thompson 1 9 99). Thirdly, sceptics point out that the pattern of i nternational investment is not evenly distributed, with most of it flowing from advanced capitalist economies to other advanced capitalist economies. Moreover, most of this investment is regionally based, with the world split into three main blocs around the USA, Europe and Japan (Hirst and Thompson 1 999; Ruigrok and van Tulder 1 99 5 ) . Finally, sceptics reject the notion that nation-states have become powerless or irrelevant, a particularly important argument for social policy. The transformationalist thesis accepts that contemporary processes of globalization are unprecedented, but argues that these processes are contradictory and 'open-ended' ( Held et a l . 1 99 9 ) . Transformationalists reject teleological notions of globalization, whether they be the utopian ones of neo-li berals or the dystopian ones of some Marxists. Rather, globalization is seen as reflexive and contested: 'globalisation today reflects the varied and self-conscious political or economic projects of national elites and transnational social forces pursuing often conflicting visions of world order' ( Held et al. 1 999: 430). For transformationalists, globalization presents nation-states with new challenges which they must take account of and adapt to. However, it does not rob them of power, since states may proactively shape processes of globalization. State power is thus transformed, rather than diminished. According to Held et al . , states in advanced capita l ist societies (SIACS)

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a re undergoing a profound transformation as their powers, roles and functions a re rearticulated, reconstituted and re-embedded at the intersec­ tion of globalising and regionalising networks and systems. The metaphors of the loss, diminution or erosion of state power can misrepresent this reconfiguration or transformation . . . . For while globalisation is engender­ ing a reconfiguration of state-market relations in the economic domain, SIACS and multilateral agencies are deeply implicated in that very p roc ess . (Held et al. 1 999: 440)

This chapter takes a 'transformationalist' a pproach, in so far as it is accepted that the world market is becoming more integrated, but sees 'globalization' as a contested process or set of processes, not a fully real ized end point. Furthermore, whilst nation-states may have to adapt to new c i rcumstances, rather than losing power, their power is being transformed. Indeed, the most powerful capita list states are active agents in shaping processes of globalization. In social policy this means that the state is not withdrawing, but that the form of its intervention is changing m some areas.

Disability: from industrialization to globalization O u r focus is on the globalization of the late twentieth and early twenty­ first centu ries. But this needs to be put in the context o f preceding economic developments. The disa bled people's movement has analysed the way in which nineteenth-century industrializatio n c reated dominant modern understandi ngs of disability. As Mike Oliver has written : Whatever the fate o f disabled people before the advent of capitalist society . . . with its coming they suffered economic and social excl usion. As a consequence of this exclusion, disability was produced in a particular form; as a n individual problem requiring medical treatment. Old age ( and I would suggest, madness and distress) suffered a similar fate . (Oliver 1 996: 1 27)

Critiques o f i nd ustrial iza t i on by d isabled commentators have highlighted its role in the creation of impairment and the construction of disa b ility (Abberley 1 99 6 , 1 997; Finkelstein 1 9 8 1 ) . Its association with environ­ mental pollution, unhealthy and dangerous industri al conditions and accidents, a s well as poverty, li nked with low wages and excl usion from the labour ma rket, have been key factors in generating i m pai rment and chronic disease. D i sabil ity has been inextricably assoc i a ted with poverty in the West si nce industrialization . This has been c e n t r a l l y related to the disemployment of d isa bled people in capital ist and capita l i st-driven

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economies. In a statement presented to the United Nations World Summit on Social Development in 1 995 on beha l f of Disa bled People 's Inter­ national, Lisa Kaupinen, General Secretary of the World Federation of the Deaf, said: 'We are t he poorest of the poor in most societies . . . . Two thirds of disabled people are estimated to be without employment . Social exclusion and isolation a re the day-to-day experience of disa bled people' (Kaupinen 1 99 5 ) . It is generally accepted that the majority of disabled people live in 'developing' countries ( Be resford 1 996). People with impairments in the developing world are more l ikely to be poor ( Stone 1 99 9 : 4 ) . Disabil­ ity Awareness i n Action has stated: 'In the developing world, the ex­ tremely high percentage of unemployment among disabled people means they a re forced to beg to survive' ( 1 99 5 : 1 ). Western industrial conceptualizations of disability and impairment were rapidly applied to the rest of the world and imposed upon societies in the Southern hemisphere without regard to their pa rticular h istories, cultures, traditions, circumstances or preferences ( Coleridge 1 99 3; Ingstad and Reynolds-Whyte 1 99 6 ; Stone 1 99 9 ) . As M i ke Oliver has said, j ust as industrialized societies created their own particular category of disability, so they generated an industry to service it ( and then exported it to the developing world) . This industry was based on a med ic alized individual model of disability and was associated with the medicalized ' rehabilita tion', segregation, exclusion and institutional­ ization of disabled people ( Oiiver 1 996: 1 27 ) . We can expect global ization t o continue t o play a central role in the social constructi on of disability and impairment, like nineteenth-century industrialization before it, even if the resulting dominant paradigms differ from those of the past. We can also expect that many of the key features of globalization, like the deregulation of ca pital, the labour market and employment conditions, will have similar effects to earlier industrialization in terms of maintaining exclusions and the link between poverty and disability. The removal of disa bling physical and social structures is unlikely to be prioritized within the imperatives of a global­ ized economy. However, one key difference between early industrialization and glob­ alization can be identified. The process of industrialization which happened in the UK in the nineteenth century is currently taking place in the developing world . Many of the companies which are leading this development are multinational s based in the developed nations. The increased mobility o f capital has led to a shift in unsk i l led and semi­ skilled manufacture t o developing nations. The impairment-creating and disabling conditions associated with Western industrial economies in the

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nineteenth centuries are now being re p l i cat ed by globalization in the Third Wor l d .

Globalization, social

po l ic y

and disabled people

Debates within the discipline of soc ia l policy have reflected those within the wider political economy literature . Th u s, some writers view global­ ization as having profound, irresisti ble effects on the capacity of nation­ states to shape auton omously their own social and economic pol ic i es, while others are more sceptical . The popular v iew is that the i nter­ national mobility of capital propels governments into competi t i on with each other for investment. They a re thus constrained to follow policies of low in fl a t io n, low taxation, low pu b l ic spending, flexi ble la bour markets and privatization - that is, to minimize the i r economic and social in­ volveme nt, except where i t facilitates ca pital accumulation. Mishra sums up this view very we l l : Put simply, by providi ng capital with an 'exit' option, globalisation has strengthened the bargaining power of capital very considerably against government as well as la bour . . . . Thus money and investment capital can vote with their feet if they do not l ike government policies . . . . Indeed global isation v irtua l l y sounds the death-knell of the classical social demo­ cratic strategy o f ful l employment, high l e ve l s of public expenditure and progressive taxation. (Mishra 1 999: 6 )

I f Mishra a n d others a re right, the consequences for disa bled people of such constra ints on the wel fare state are profound. Whilst the nature of state wel fa re for disabled people has often taken oppressive forms (Oliver and Barnes 1 99 8 ) , the provision of support services funded on the b a s is of collective social responsibility and risk pooling is a prerequisite for the equal pa r t ici p ati o n of disabled people in society. Also more recently, because of the intervention of disabled people and other social care serv ice users and their creation of new forms of support and new ways of orga nizing and c ontro l l i n g it, fu rt h e r prospects for a c hievi ng equality through col lective prov i sion have emerged. The removal of disabling social barriers necessita tes that society must have go al s other than simply profit maximiza tion. However, many writers have pointed out th at multinational c orpora tio n s ( MNCs ) are seeking more than simply low taxes and· c heap la bour when taking decisions to i nvest. They may also seek de ve l op e d infrastructure, skil led labour or si m p ly new markets for their goods . The fac t that most FDI flows to a dv a n ced capital ist countries undermines the be lief that firms primarily seek che a p labour when

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investing abroad . Furthermore, competition between na tion-states can be regulated where there is the pol itical w i l l to do so through multilateral agreements. In any case, many writers have pointed out that di fferent welfare states respond very differently in meeting the challenges of globalization ( Esp­ ing-Andersen 1 9 96a, 1 9 96 b; Keohane and Milner 1 996: 1 4; Held et al. 1 999: 1 3 ) . Esping-Andersen, for exampl e, argues that ' One of the most powerful conclusions in comparative research is that political and insti­ tutional mechanisms of interest representation and political consensus building matter tremendously in terms of managing welfare , e mployment and growth objectives' ( 1 99 6 a : 6 ) . Thus, while post-war Western welfare states addressed similar objectives, they differed in terms of how they pursued these. Similarly, as these same welfare states see k to adapt to the changing conditions associated with globalization, they do so very di ffer­ ently. As Esping-Andersen points out, ' Each of these welfa re state re­ sponses combines benefits and costs in a way which is hardly Pareto opti mal' ( 1 996b: 2 5 8 ) . However, even Esping-Andersen ( 1 996b) argues that the costs imposed upon welfare states by globalization point towards a particular set of policy options, or ' positive sum solutions in a w orld of trade-offs' . These positive-sum solutions involve an emphasis on education a s the preferred social policy weapon. This is because the social policies consistent with higher levels o f employment, it is argued, are those which promote the flexibility of la bour. Policies which offer greater protection to those who are already empl oyed, on the other hand, tend to reduce the net n u m ber of jobs and create a division between those 'inside' paid employment and those outside it. Yet, when combined with education policies premissed upon skill acquisition and 'life long learning', fie xi ble labour markets can also promote equal ity of opportunity, eliminating the surplus of unskilled workers and ensuring that inferior, low-paid jobs do not become life­ cycle traps, but merely stopgaps or first-entry jobs. This is consistent with New Labour's pol icies, which are premissed upon increasing labour market participation rates and i ncreasing skill levels through educational reforms ( Holden 1 999). These pol icies have in turn been influenced by the ideas of Reich ( 1 991 ) , who argues that workers in countries like the USA and the UK must compete with each other to attract internationally mobile investment. Only by competing on the basis of high skills, rather than low wages, can workers in such countries hope to maintain their standard of li-.·ing. Labour market participation is also seen by New Labour as a means of combating social excl usion, hence the various types of 'new deal' on offer. New Labour's policies of increasing labour market participation thus dovetail with its educational policies t o in-

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crease labour supply, aggregate skill levels and therefore la bour market efficiency. Such policies do have their critics. Jordan ( 1 99 8 ) has poi nted out how a new emphasis on attaching obligations to rights (or 'reciprocity') has been linked to this elevation of labour markets, involving a drive to increase participation in them through the placing of cond ition ality on benefits. Jordan develops a s ustained critique of the new 'Ciinton I Blair orthodoxy' on the basis that it provides neither efficiency nor social justice. He argues that the emphasis on education can only be part of the solution, since an increasing proportion of work in modern industri­ alized economies must take the form of 'low-productivity tasks for social reproduction' (Jordan 1 998: 67). Such work, he a rgues, is not suscepti ble to technologica l change or enhanced efficiency. Placing the work ethic at the centre of social policy may be counter-productive if it leads to a 'blaming a ttitude ' towards those who can no longer find work in trad­ itional industries, or to costly social divisions, p unitive p olicies and a breakdown of trust a nd co-operation . Such pol icies lead i n the d irection of forced labour and 'the barbarity of the workhouse' (Jordan 1 998 : 67) . The implications of this for disabled people a re m a ny. The emphasis on education has yet to be matc hed by ful l recognition of the need for disabled people's full and equal incl usion in education. Inclusive educa­ tion for all disabled children and equal access to further and higher education for disa bled adults continue to be distant goals. New Labo ur's emphasis on increasing the opportunities for employment has been wel­ comed by many disabled people, who have consistently expressed their desire to work, have campaigned for equality in the la bour m arket, a nd conceived of employment as a right to be guaranteed and sa feguarded ( Oiiver and Barnes 1 99 8 ) . The exclusion of disabled people from the la bour ma rket has been one of the principal sou rces of their oppression. As argued a bove, the development of industria l capitalism tended to exclude disa bled people from the world of work, and there fore from equal participation in society. Disabled people have one of the highest rates of unem ployment in Western societies like the UK. Mental hea l th service users tend to have the highest rate among d isabled people (Bird 1 999; Mind / BBC 2000 ) . Yet, when in work, disa bled people have often been consigned t o the lowest-paying jobs ( O iiver and Barnes 1 99 8 ) . There is evidence that the growth of those c l a i m ing inca pacity I invalidity benefit has resulted from the expulsion of many disabled people from the la bour market follow i ng the growth of unemployment after 1 9 8 0 . Accord ing to Berthoud ( 1 998: 1 2): 'As the supply of labour has e xpanded faster than demand, em ploy­ ers may have become more selective in thei r choice of staff, excluding

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Beresford

marginal workers, such as disa bled people . ' New Labour polic i e s effect­ ively increase the la bour supply sti l l fu rt her. This may be efficient for em p lo ye rs, who h a ve a w i d er pool of labour to draw on. However, if mo re disabled people are to enter the labour marke t , especia ll y if they are not si m p l y to be pu s hed i nto the l ow est - pa y i n g j obs, comprehensive su ppo rt policies will need to be put in place which exceed those which have bee n offe re d by New L a b our. Furthermore, the perception that they will be in a p p rop riate l y forc e d i nto e m p l oym e nt is a source of gre a t anxiety for many disabled peopl e . New Labour's reform of the 'a l l work te st ' (the pass i ng o f which i s a c ond i tion for cl a iming incapacity benefit) to focus on what d isabled people can do, a s well as what they ca nnot do (DSS 1 99 8 ), ha s been w e lc om ed by ma ny. Yet disabled peop l e ha ve pointe d out that offe r in g support to find work shoul d b e sepa r ate d from b e nefit assessment if it is to be effect ive and equitable. The narrow spin p lac ed on work by a 'hyperglobalizing' approach to gl ob a liz at io n converts the liberatory ideal of the disabled people's movement into an opp ress ive and con t r ol l ing ob ligat i on . The UK gove r nment slogan, 'Work for those who can, secu rity for th ose who c a n 't ' , over-simplifies and ignores the real i ty that many disabled peo p l e face. The truth is th a t many service users want both - work and sup port. Thus the inclusive rhetoric of welfa re to work is experienced by many d is ab led peop le as a policy of assimilation, base d on pressure to con fo r m within a d e reg ul a ted l a bour m a rk e t. Policies premissed upon globa lizat i o n and the need for increased com­ petiti v e n e ss thus h av e a number of important ramifications for disa b le d people. Yet, a s we have argued, the perception that g l obal ization forces governments to adopt certain k inds of policies is open to qu e stio n . In thi s context, 'globalization' may be s e en as a pow e r fu l l e gitim a t ing idea . As M o ran and Wood put it: 'Constructing exte rna l constraints . . . allows particular nationa l elites to pre se n t their policy p re fe renc es as the more or less unavoidable consequences of forc e s over which nationally organ ­ ised institutions can have little or n o c ontrol ' ( 1 9 96: 1 40 ) . The disabled people 's movement, however, ha s s h own that established i d e a s can be challenged, and, throug h taking po l itica l action, has demo n stra ted that the ri g hts and needs of people can be b r ought ce nt re stage, de s p ite the argument that 'there is no altern ative ' ( Beresford and Ho l d en 2000 ) . Furthe r m ore , disabled people have orga nize d o n a n i ntern a tio n a l , as well as a nati o nal , basis. In this t h ey have mirrored the mobili zations of anti-capitalist prote sters at meetings of the Wo rl d Trade Organization , the Inter n a tio n al Monetary Fund and the World Bank. Th e se mobiliza­ tio ns ha ve brou ght toge th e r a d ive rse and often incoherent alliance of interests. The y have nevertheless succeeded in c re a ting a p ublic debate

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about global ization, and the policies o f the world's most powerful gov­ ernments towards the world economy.

Globalization, social

care

and disabled peopl e

We argued a bove that the state is not withdrawing as such, but tha t the form of its intervention may be changing in some a reas. The elevation of educa tion as a social and economic policy is one example of this. How­ ever, the provision of social care, and i ts underpinning ideology, is one area in the UK where the form of state i ntervention has changed d ra m at­ ically over the last two decades. There have also been corresponding shifts in other EU countries. In the UK this has primarily bee n the result of the shift towards private provision in the 1 980s, fol lowing the in­ creased availabilit y of social sec urity funding for long-term care places ( Bradshaw 1 9 88; Harrington and Pol lock 1 998 ) . This was compounded by the Conservative government's insistence that 85 per cent of the 'special transitional grant', which funded the community care reforms after 1 9 93, be spent in the independent sector (Edwards and Kenny 1 997). However, the move away from state provision did not mark the end of state intervention; rather, the form of state i nvolvement shifted to subsidy and regulation. In recent years this shift towards state-funded and regu lated private provision has promoted i nternational ization, as the provision of social ca re in the private sector has become more concen­ trated. B}• 1 99 8 , the independent sector provided 88 per cent of all residential and nursing ca re home places (DoH 1 9 9 8 a ) . There were 347, 400 resi­ dential places in 24,800 residential homes ( i ncluding small homes) and 1 93,900 places i n 5 , 800 nursing care homes. The majority of these were for older people, but many were for other adults with learn ing d i fficul­ ties, physical impairments or psychiatric diagnoses. Corporate penetra­ tion is greater in nursing than in residential care, partly because homes are typica lly la rger than in residentia l care. They therefore a fford some econom ies of scale i n del ivering the service, which large corporate pro­ viders can add to their economies of scale in purchasing supplies. Between 1 9 8 8 , when the market analysts Laing and B uisson started maintaining records, and 1 9 97, major providers more than doubled their share of the for-profit ca re home market ( Laing and Buisson 1 997: A 1 8 6 ) . Lai ng and Buisson's definition of 'major provider' includes all organizations with three or more homes. Yet t here has clearly been a process of consol idation in the c a re home sector. For the first time in 1 996 the num ber of for-profit major providers fell slightly. More

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significantly, the number of UK stock ma rket-quoted companies fel l sharply as the result of a series o f mergers and acquisitions ( M&As) during 1 996 a nd 1 99 7, reflecting increasing concentration ( Laing and Buisson 1 997: A 1 86 ) . At the end of 1 99 8 , there were 288 for-profit major providers ( CCMN, March 1 99 9 ) . However, the ten largest operators owned or leased 1 3 . 8 per cent of tota l UK for-profit capacity, wh ilst the three largest owned or leased 7.9 per cent ( Laing and Buisson 1 999-2000: 1 76 ) . Having faci l itated the rise to dominance of independ­ ent provision during the 1 9 8 0s through open-ended social security funding and the conditions attached to the special transitional grant, governments have s ubsequently facilitated concentration within the market through restricting local authority budgets . This is because it is the la rger firms which can best withstand the current tight financia l climate, b y uti lizing their substantia l economies of scale. Sma l ler homes therefore experience by far the most severe financial problems. For example, Andrews and Phillips ( 1 99 8 : 1 0 ) found that in Devon, where the i r study was focused, 70 per cent of the homes operat­ ing at or below their margins of profitability in 1 994 were registered for fifteen beds or fewer. Many proprietors were disillusioned with working in the residential sector, and over one-third of home-owners stated they would sel l their business i f it were possible. Smaller homes a re not necessarily owned by sma l l companies, but on the whole this is the case, partly because large companies have engaged in some new building in order to take advantage of economies of scale. Accord i ng to Bartlett and Burnip ( 1 9 99: 1 0 ) , in the process of improving quality in care homes, 'the loss of good smaller homes along the way seems i nevitable' . As Andrews and Phillips ( 1 99 8 : 1 0) point out: 'Ironically, it is the smaller homes, being less "institutional", which sit best with the phi losophy of care in the community. ' The shift towards private provision has facilitated internationalization because, as Porter ( 1 990: 247) puts it, 'With rare exceptions, govern­ ment-owned service organisations do not compete global l y' . Foreign direct investment (FDI) in services has increased even more rapidly than in manufacturing in recent years (Hirst and Thompson 1 9 99; Stop­ ford and Strange 1 99 1 : 8 7 ) . This reflects both the increased importa nce of services in advanced capitalist economies such as Brita i n (Daniels 1 993), as wel l as the preference of service firms for FDI rather than trade when expanding abroad. Cross-border sales of services often have to take the form of FDI, since many services require physical proximity to the consumer, because they are consumed as they are produced ( H oek­ man and Primo Braga 1 9 97: 286). So, for example, when a doctor travels abroad to carry out an operation, this may be regarded as trade, but

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when a health care company wishes to del iver its services a broad o n a more regular basis, it must i nvest i n setting u p and running its own hospital . Multinationals have moved i nto the British health care market since the 1 970s , when it was first open ed up (Mohan 1 9 9 1 ) . Many of these multinational health care corporations were American, reflecting the longer tradition of private provision in that country and the greater expertise which such firms have consequently acquired. This has been reflected in recent years within the British socia l care market, where American firms have taken advantage of opportunities for their expansion. Thus the second largest long-term care operator i n the UK, Ashbourne, is owned by the American Sun Healthcare, which a lso has operations in Germany, Spain and Australia. Sun Healthcare consist­ ently expanded its international operations in the second half of the 1 9 90s. By the end of 1 9 98 , it operated 1 86 facil ities with more than 1 1 , 700 beds outside the USA, an increase of 12 per cent over 1 997 ( Sun Healthcare 1 99 8 : 1 2 ) . In February 1 9 99 the company had 80,720 full­ time and part-time employees worldwide ( Sun Healthcare 1 998: form 1 0k, 5 ) . Ca lcula ti ons show that, of these 1 0,53 2 were based o utsi de the USA. The company's annual reports (Sun Healthcare 1 996: 1 1 ) pin-point 'favoura ble ma rket conditions and regulatory envi ronments' abroad as incentives for explo ring opportunities outside the USA. Sun Healthcare entered the UK market i n 1 994, buying up the British firms Exceler, Apta and Ash bourne, and merging them i nto the country's second-largest provider. However, Sun Healthcare has experienced substantial problems arising from its borrowing to fund its expansion and from changes to the US system of state reimbursement for health care, and in 1 999 entered 'chapter 1 1 protection', the US equiva lent of receivership (Sun Health­ care Group press release 26 October 1 99 9 ) . Other U S firms have also entered the British market. The American Nationa l Medical Enterprises ( NME, later Tenet Healthcare Corpor­ ation ), for example, had a majority shareholding in Westmi nster Health Care (WHC ) from early in its existence, before withdrawing in 1 996. WHC has a l so built alliances with US companies in retirement h ome management a n d in health care real estate. WHC's most recent owners, Canterbury, were backed by the American investment bank Goldman Sachs and the A merican pri vate equity firm Welsh, Carson, Anderson and Stowe ( CCMN, M a rch 1 9 99 ) . Canterbury's chief executive, Chai Pate!, told Community Care Market News ( May 1 99 9 ) that the group was actively considering a number of propositions regarding expansion i nto Europe, including 'a num ber of potential opportun ities for the group across all its acti vities in Germany, France and Spain'. ldun Healthcare, which acq u i red the UK firm Ta maris a fter its fai l ure in 1 9 9 9 ( CCMN,

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Novem ber 1 999, March 2000 ) , is a subsidiary of the Amcric a n - based real estate investment trust ( REIT) Omega Worldw ide. However, British firms have also begun to internationalize. The largest provider of long-term care in the UK, the British United Provident Association ( BUPA ) , has significantly expa nded both its insurance and its directly provided services abroad in recent years. BUPA claims to insure four million people from 1 1 5 d i fferent national ities who live in around 1 90 countries (http: / / www.bupa-intl.com / about2.htm l ) . The maj ority of these a re British, living at home or abroa d , but B UPA claims that one m i l lion o f its members live outside the UK. By 1 997, BUPA had direct operations in seven countries other than the UK ( BUPA 1 997: 3 ) , including Spain, Ireland, Thailand, Hong Kong and Saudi Ara bia. Its Annual Review ( BUPA 1 997: 8) indicated that in 1 997 the organization had met its 'ambitious target for international deve lopment', and had become 'a more comprehensive i nternational healrhcare business' . In 1 999, the organization o pened a primary care and diagnostic cl inic in India. Its Spanish arm, Santitas, has recently moved into care home operation ( CCM N, July 2000). BUPA's status a s a provident society means that, technically, i t is non­ profit making. However, it can be regarded as operating within the market as any for-profit firm would: it must compete with other busi­ nesses, must do this in a cost-effective wa}·, and has attempted t o expand and gain market share throughout its existence ( Mayn a rd and Wil liams 1 984: 107). The doubling of its advertising budget between 1 979 and 1 9 8 1 has been taken as 'evidence of a m o re expansionary, marketing­ oriented strategy' ( Griffith and Rayner 1 98 5 : 1 5 ), a trend which has continued. The increasing arriva l of for-profit organizations in the British health care market a fter 1 979 had intensified competition (Papadakis and Taylor-Gooby 1 9 8 7 : 6 8 ), c ompelling BUPA to adopt the strategic thinking of its for-profit competitors. From the late 1 9 80s, competition in health insurance increased, as banks, building societies and insurance companies entered the market. By 1 996, BUPA's share of that m arket had fallen to 46 per cent ( Laing and Buisson 1 996). Whilst Private Patients Plan (PPP) decided to demutu a lize to raise the capital necessary to compete (May and Brunsdon 1 999: 285), BUPA has increasingly expanded into other areas of health care. However, the dominance of the NHS in acute hospital care has influenced BUPA's move into social care, as well as its expansion a broad. Like other long-term care pro­ viders, BUPA has borrowed substantial sums in order to fund the expan­ sion of its care home operations ( CCMN, February 2000), a lthough its provident status means it is not under pressure fro m shareholders to demonstrate short-term profit gain.

Globalization and Disability 203 Furthermore, these developments are taking place i n a context where in the UK, for example, the nature of voluntary or charita ble organizations in the contemporary economy increasingl y mirrors that of other large organizations. This relates partly to the way in which vol untary organiza­ tions are i ncreasingly being used by government to pursue its own agenda. Funding to voluntary organizations often comes primarily from govern­ ments and official bodies . Voluntary organizations are often the favoured providers of government and its agencies, since they can implement government policy, but carry more legitimacy tha n government bodies among the public. This increasingly sem i-official status of some voluntary organizations also exists at the supranational level, where organiza­ tions like the World Bank and IMF have accorded international non-governmental organizations (INGOs) unprecedented influence (Economist 1 999). Thus the role of the IMF and World Bank in effectively dictating the economic and social policies of developing countries has sometimes in practice been complemented, rather than challenged, by large INGOs. This is linked to the increased professionalization and man­ agerialization of such voluntary organizations, including those which may be large-scale 'care' providers. An example i n the U K is Leonard C heshi re, which has 1 0,000 plus domestic service users of domici l iary, day care and residential services, as well as parallel operations internationally. Like BUPA, such organizations increasingly operate on a similar basis to for­ profit firms, but, rather than being listed on the Stock Exchange, reinvest their 'su rpl us' in the organization, notably in i ts infrastructural, lobbying and profi le-raising activities. The increasing com petit i on a nd innovation introduced by internationalized for-profit firms can only extend such ten­ dencies, as voluntary organ izations struggle to retai n and expand their market share, both i ndividually a nd as a service supply sector. Mohan ( 1 9 9 1 : 864) points out that, when considered from the stand­ point of overall market share, the impact of multinationals in health care may appear to be l imited, and this is also the case for social care . However, international ization is likely to increase i n the socia l care sector as the continued restriction of state fundi ng and the higher costs imposed by forthco m i ng cha nges to the regulatory system ( D oH 1 9 9 8 b, 1 999a, 1 999b) conti nue to squeeze out smaller providers. By the end of 2000, there were signs that the over-capacity in the sector was reversing in some areas, as small providers took advantage of the rise in property prices to get out of the business before the new regulatory changes were imple­ mented ( CC M N, October 2000 ) . Furthermore, as i s demonstrated by the transform�uion of BUPA into a multinational health care busi ness, the q ualitati ve effects of m u l tination a l i nvol vement in the market are at least as important a s the extent of that involvement. As Mohan ( 1 9 9 1 ) argues,

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multinationals a re leaders in terms of i nnovation in ma rketing and b udgeting techniques, as well as in work organization. As such, they are often more cost-efficient ( though not necessa rily more e ffective at meeting need ) than domestic providers, and increase the level of compe­ tition in the market overall. Th is has an e ffect on a l l providers, be they for-profit firms, provident associations or charities, as they must increas­ ingly operate accordi ng to the criteria of for-profit firms if they are to capture and retain market share. The implications of this for users of these services are m any. Fi rst, the merger and acquisition process, which is a feature of the concentration of provision and the entry of foreign firms, may severely disrupt the lives of residents. Changes of ownership may lead to changes of regime within the company 's care homes, to accelerated turnover of sta ff, and in some cases to the closure of some homes and the physical transfer of the residents. All of these tend to have a negative effect on the rights, health and well-being of residents, especia lly the very old, in the worst cases leading to fatalities. The better providers may consult residents about changes to the services they receive, but residents have no control over changes in ownership. Secondly, l a rge companies approach issues of quality on the basis of branding and standardization. Their goal is to be seen to deliver high­ quality services of the same standard across all their homes, wherever they may be located . Quality is thus controlled through process standa rds, which stipulate the tasks to be completed by workers. The individual j u dgement of the worker is thus s u bordinated to a more 'Taylorist' system of work control. Thi s may produce high-quality care in one sense, but it also standardizes that care. Internationalized firms may also be able to draw on a greater pool of expertise in c reating their quality systems. However, some disabled writers ( O i iver and Barnes 1 998) have criticized the very notion of 'care' as part of a paternal i stic ideology which under­ pins the dependent status which disabled people are often forced into. Furthermore, increasing provision by large companies may reduce the degree of choice available to purchasing agencies, especially if local mon­ opolies emerge as a result of the concentration process. This si mply serves to highlight the contentious nature of much 'commun ity' and socia l 'care' provision, and intensifies the debate about what kind of services should be made availa ble to disa bled people, young or old .

Conclusion The increasing i ntegration of the world economy c learly raises a number of i mportant issues for social policy and for disabled people. The idea

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that the world market, and the internationalized companies which oper­ ate within it, constitute an irresisti ble force which no government can withstand has been used as a powerful wea pon i n j ustify i ng welfare budget restraint. It has also infl uenced the development of specific gov­ ern ment policies and spending priorities, most nota bly the emphasis on labour market efficiency and education . The government's concern with increa sing labour supply by widening participation in work is promoting an ideology of 'inclusion' in work for disa bled people. This i s in contras t t o t h e earlier phase o f capital i sm which Finkelstein ( 1 9 8 1 ) a n d others identified as effectively expelling disabled people from the labour force and socially marginalizing the m . Yet, without adequate support, disa bled people wi l l continue to be disproportionately pushed i n to low-paid routine jobs, especially as an increase in labour supply w i l l increase competition for jobs. Furthermore, the government's persistent emphasis on paid employment risks fu rther marginalizing those left on benefits ( Riddel l 200 1 ) However, global ization may have implications for disabled people at levels other than simply policy formatio n . Thus, the i nternational ization of social care providers has reflected the i ncreasing i nternationa lization of other services, and of the world economy more genera lly. One of the i ronies of globalization may be that as it rei n forces disability through its damaging and disrupting effects, it also gives rise to an internationa l ized social care i ndustry to meet the needs which it helps generate. All these developments increase, rather than reduce, the i mportance of govern­ ments and other domestic actors, including the political movements of disa bled people and others . They highlight the continuing need for dis­ abled people and their movements to develop their demands and their strategies for achieving them i n relation to governments. But they also point to the increasing importance of acti ng internationally, as well as national ly, and of addressing and developing strategies for action and change in relation to multinational corporations. New rel ationships are developing between governments and these MNCs. Complex and new relationships between politicians, civil ser­ vants and M N C e xecutives a re emergi ng, associated with significant interchange of, and links between, personnel. These pose new and diffi­ cult questions ahout accounta bil ity for disabled people and other social care serv ice users . There are worrying questions a bout whether increas­ ing econ omic press u re will lead to increased warehousing of disa bled people in standa rdized low-grade residential institutions instead of them being ensured adeq uate and appropriate personal assistance to live i nde­ pendently. The emphasis on em ployment for disabled people within the framewo rk of a discri m i n a tory a m i oppress ive labou r market also raises .

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big questions about whether disabled peop le will i ncrea singly be c ategor­ ized on the basis of those who can and those who can't work, with the former deemed 'accepta ble' and capa ble of 'inclusion' and the latter stereotyped as 'dependent' and 'socially excl uded ' . Such economic pres­ sures, combined with advances in, and the renewa l of interest in, gene technology and the perception of new possibilities for genetic forecasti n g and engineering, may come to constitute a funda mental assault on the human and civil r i ghts of disabled people included in the second category. We may expect to see an increasing polarization of attitudes towards disabled people, in line w ith the government slogan 'Work for those who can, security for those who can't' . This may be translated into greater 'tolerance' of t hose who can be fitted into a global ized labour market and i ncreased intolerance of those who it is perceived cannot. Organ izations of disabled people and mental health service users / sur­ vivors are worried that there may be an increased emphasis on genetic solutions to reduce, if not eradicate, this latter group. This makes it all the more important for disabled people and their organizations to develop their own critiques of globalization as a basis for both taking forward their understandings of disability and developing new strategies to deal with its contemporary expressions . Globalization is not a force beyond human control (although some governments en­ courage this assumption); rather, it is part of the development of a pattern of human relations w h ic h all of us h ave a stake in shaping. REFERENCES Abberley, P. 1 996: Utopia and impairment. In L. Barton (ed. ), Disability and Socie ty: Emerging Issues and Insights. Lo nd on: Longmans, 6 1 -79. Abberley, P. 1 997: The limits of classical social theory in the a nalysis and transformation of disablement (Can this really be the end; to be stuck inside of Mobile with the Memphis blues again ? ) . In L. Barton and M. Oliver ( eds), Disability Studies: Past, Present and Future. Leeds: Disability Press, 25- 44 . Andrews, G . and Phillips, D . 1 9 98: Markets and private residential homes: promoting efficiency or chaos. Generations Review 8 ( 3 ) , 9-1 1 . Bartlett, H . and Burnip, S . 1 999: Improvi ng care i n nursing and residential homes. Generations Review, 9 ( 1 ), 8-1 0. Beresford, P. 1 996 : Poverty and disabled people: challenging dominant debates and policies. Disability and Society, 1 1 (4), 5 5 3-67. Beresford, P. and Holden, C. 2000: We have choices: globalisation a nd welfare user movements. Disability and Society, 15 (7), 973-89. Berthoud, R. 1 998: Disability Benefits: A Review of the Issues and Options for Reform. York: Joseph Rowntree Foundation.

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Bird, L . 1 999: The Fundamental Facts . . . All the Latest Facts and Figures on Mental lllness. London: Mental Health Foundation. Bradshaw, J. 1 98 8 : Financing private care for the elderly. In S. Baldwin, G. Parker, and R. Wailer (eds), Social Security and Community Care. Aldershot: Avebury Press. BUPA 1 99 7: B UPA A nnual Review. London: BUPA. CCMN ( Com munity Care Market News ) . Coleridge, P. 1 993: D isa b ility Liberation a n d Development. Oxford: Oxfam. Daniels, P. W. 1 993: Service Industries in the World Econo my. Oxford: Blackwell. Disability Awa reness in Action 1 995: Employment special. Disability A wa reness in Action Newsletter, 27 May. DoH ( Departm ent of Health ) 1 998a: Community Care Statistics: Residential Personal Social Services for Adults, England. London: Government Statistical Service . DoH ( Department of Health) 1 99 8 b: Modernising Social Se rvices . London: DoH. DoH ( Department of Health) 1 999a: Fit for the Future? National Required Standards for Residential and Nursing Homes for Older People Consultatio n Docum ent (including regulatory impact statement). London: DoH. DoH (Dep a rtment of Health ) 1 999b: Regulatory Impa ct Appraisal - M ode rnis ­ ing Social Services London : DoH. DSS ( Depa rtment of Soc i a l Security) 1 99 8 : A New Co n tract for Welfare: S uppo rt {or Disa bled People. London: Stationery Office. Econom ist 1 999: The non-governmental order. Economist, 1 1 December, 22- 4. Edwa rds, P. a nd Kenny, D . 1 997: Comm u n ity Care Trends 1 99 7: The Impact of Fu nding o n Local Authorities. London: Local Government Managemen t Boa rd . Espi ng-A nder sen , G . 1 996a : After the golden age. In G. Esping-A ndersen (ed. ) Welfare States in Transition: National A dap tations in Global Economies Londo n: Sage, 1 -3 1 . Esping-An dersen, G . 1 996b: Positive-sum solutions in a world of trade-offs? I n G. Espin g-An dersen (ed . ) Welfa re States in Transition: National Adaptations in Global Econo mies. London: Sage, 256-67. Finkels tein, V. I 98 1 : Disa bi lity and the helper I helped relationship: an historica l view. In A. Brechin et a l . (eds) , Handicap in a Social World, London: Hodde r and Stough ton, 59-6 3 . Gri ffith, B. an d Rayner, G . 1 98 5 : Commercial Medicine i n London . London : Greater London Council Industry and Employment Branch. Harri ngton, C. and Pol lock, A. M. 1 998: Decentralisation and privatisati on o f long- term care in UK a nd USA. Lancet, 3 5 1 ( 1 3 June), 1 8 05-8 . Held, D . , McGre w, A . , Goldblatt, D . a nd Perraton, J. 1 999: G l oba l Transfo rm­ ations: Politics, E conomics and Culture. Cambridge: Polity. Hirst, P. a nd Thom pson, G . 1 999: Globalisation in Question, 2nd edn. Cam­ bridge: Polity. ,

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Hoekman, B. and Primo Braga, C. A. 1 9 9 7 : Protection and trade in services: a su rvey. Open Economies R eview 8 ( 3 ), 2 8 5-308 . Holden, C. 1 99 9 : Globalization, mcial exclusion and Labou r's new work ethic. Critical Social Poli cy 1 9 ( 4), 529-3 8 . lngstad, B . and Reynolds-Whyte, S. (eds) 1 996: D isab i lity and Culture. Berkeley, University of Ca lifornia Press. Jordan, B. 1 99 8 : The New Politics of Wlelfa re : Social Justice in a Global Context. London: Sage. Kaupinen, L. 1 99 5 : Statement on behalf of the World Federation of the Deaf, the World Blind Union, the International League of Societies for Persons with Mental Handicap, Reha bilitation International and Disa bled People's Inter­

national. D isability Awareness in A ctio n Newsletter 25 March, 2 . Keohane, R. 0. a n d Milner, H . V. ( eds) 1 9 9 6 : Internationalization and Domestic Politics Cambridge : Cambridge University Press. Laing and Buisson 1 996: Review of Private Healthcare. London: La ing and Buisson. Laing and Buisson 1 997: Review of Priva te Healthcare. London: La ing and Buisson. Laing and Buisson 1 9 99-2000: Hea lth ca re Market Review. London: La ing and Buisson. May, A. and Brunsdon, E. 1 999: Commercial and occupational welfare . In M. Page and R. Silburn (eds), B ri t is h Social Welfare in the Twentieth Century. Basingstoke: Macmillan, 27 1 -9 8 . Maynard, A . and Williams, A. 1 984: Privatisation and the National Health Service. In J. Le Grand and R. Robi nson, (eds), Privatisation and the Welfare State. London: George Alien & Unwin. Mind / BBC 2000: Me nta l Health Factfile, January, London , Mind. Mishra, R . 1 9 99: G lobalization and the Welfare State. Cheltenham: Edwa rd Elgar. Mohan, J. 1 99 1 : The internationalization and commercialization of health care in Britain. Environment and Pla n ning A, 23: 8 5 3-67. Moran, M . and Wood, B. 1 9 96: The globa lization of health care policy. In P. Gummet (ed. ) , Globalization and Public Po licy, Cheltenha m: Edward Elgar. Ohmae, K. 1 990: The B orderless World. New York: Harper Collins. Oliver, M. 1 9 9 6 : Un dersta nding D isabili ty : From The ory to Practice. Basing­ stoke: Macmillan. O liver, M. and Barnes, C. 1 99 8 : Disabled People and Social Policy: From Exc lusio n to Inclusion . London: longman . Papadakis, E . a n d Taylor-Gooby, P. 1 9 87: The Private Provision of Pu blic Welfa re: State, Market and Community. Brighton: Wheatsheaf. Porter, M . 1 990: The Co mpetitive Advantage of Nations. London: Macmillan. Reich, R. B . 1 99 1 : The Work of Nations. London : Simon and Schuster. Riddell, S. (2001 ) : Disa bled people's rights. SPA News, Newsletter of the Social Policy Association, May I June, 29. Ruigrok, W. and Tulder, R. van 1 99 5 : Th e Logic of Inte rnational Restructuring. London : Routledge .

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Stone, E. (ed . ) 1 999: Disability and Development: Learning from Action and Research on Disability in the Majo ri ty World. Leeds: Disability Press. Stopford, S. and Strange, S. 1 99 1 : Rival States, Rival Firms: Competition for World Market Shares. Cambridge: Cam bridge University Press. Sun Healthca re 1 996: Sun Healthcare Group Inc. Annual Report. Albuquerque, NM: S u n Healthcare. Sun Healthcare 1 998: Sun Healthcare Group Inc. Annual Report. Al buquerque, NM: Sun Hea l thcare.

11 Disability, Citizenship and Rights in a Changing World

Marcia H.

Rioux

The best reparation fo r th e su ffe ri n g of v ic ti m s and communities - and the h igh e st recognition of the i r efforts - is the transformation of our society into one that ma kes a living rea l ity of the h uma n ri gh ts for which they s tr u gg l ed . Nelson Mandela, Civilization lvlagazme, June I 999

lt then occu rred t o me th a t the right to be the same . . . and the right to be different . . . were not o p posed to eac h other. On the contrary, the right to be the same in te r ms of fundamental civil, political, legal, economic and soc i a l rights p rovi d ed the foundation for the expression of difference t h r oug h choice in the s p he r e of culture, l i fe - sty l e and pe rso n a l pr i o r i t i es . In other wo r ds , p ro v i ded that d i ffe re n c e was not used w m a i n t a i n inequa l ­ ity, subordination, inj ustice and marginalisation.

Albie Sachs, Human Rights in the Twenty-First CelltUY)'

In 1 996 the Supreme Court of Canada ruled that no one could be lawfully sterilized without personally consenting, unless it is a matter of medical necessity. There is no legislation in Canada that permits a third party (including parents, next-of-kin, the publ ic trustee or the admin is­ trator of a facility) to consent to a non-therapeutic sterilization on behalf of a person with a disability. This case was the first in a l ine of cases that together make it possible to tease out the lega l and social parameters of what human rights and equality mean for disa bled people. S imilar cases in other countries pro-

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vide contrasting views of disabil ity, and also build a picture of what human rights mean in practice, and how pervasively the notions of charity and disentitlement attach to disability. These cases draw a line in the sand as to where rights can be exercised by disabled people and where the usual rules, norms, standards and customs do not require that disa bled people be treated to the same benefits of citizenship as do others. These are not cases a bout substantive issues - sterilization, sign language i nterpretation and so on. Rather, they a re case studies of the interplay between law, social theory and disability. The tension between promot­ ing rights, enabling citizenship and paternalistic protection underlie these legal cases ( Rioux 1 99 0 ) . The court in the Et•e case limited the parens patriae power, a benefi­ cent, paternalistic area o f responsibility, and a rgued that the right to procreate or the privilege to give birth is fundamental, thereby circum­ scri bing the power of the state to restrict fundamental rights based o n disability or on the duty of the state to protect vulnerable people. In England, at the same time, the House of Lords rejected the findings of Eve, and applied the best interests test to a similar situation, a seventeen­ year-old girl with an intellectual disabi lity. They determined that the procedure was in her best interests, and upheld the trial judge's granting of the application for wardship and gave perm ission for the operation to be performed. The court made a finding that the right to reproduce is va luable only if the individual can exercise a utonomy. In their view such a right would be i rrelevant to the girl concerned, and even harmful in the pa rticular case, and it was the prerogative of the court to determine when that would be the case. They viewed intellectual disabil ity as such a case. Lord Hailsha m , LC, stated that while the history within the Canadian court's decision of the parens patriae jurisdiction was 'extremely helpful ' t o him, he found that his I M r J u stice Laforest wntmg on behalf of the Canadian Supreme Court! c o n c l us i o n that the procedure of the sterilization should never be authorized for non -thera peutic purposes (is] tota lly u n c o n v i n cing and i n startl i ng contradiction to the welfare p r i n c i p l e which should be the first and paramount considera tion in wardship cases . . . . To talk of the 'basic right' to reproduce of an individual who is not capable of knowing the causal connection between intercou rse and childbi rth, the nature of preg­ nancy, what is involved in d e l i v e r y, u n a b l e to form maternal instincts or to care for a child a ppears to me wholly to part company with reality. ( Re B 1 98 7 ) .

Mr Justice LaForest w rote fo r the Canadian court :

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The grave intrusion on a person's rights and the certain physical damage that ensues from non-therapeutic sterilization without consent, when com­ pa red to the high l y questionable advantages that can result from it, have persuaded me that it can never safely be determined that such a procedure is for the benefit of that person. Accordingly, the procedure should never be authorized for non-therapeutic purposes under the parens patriae j u risdic­ ti o n .

Lord Bridge, while not d is p u ting the Eve decision on the facts, was critical of t he nature of rights that was proposed by the Canadian court. H is criticism was categorical and reve a l i ng. This sweeping generalization seems to me, w it h respect, to be entirely unhelpful. To say that the court can never authorize sterilization of a ward as being in her best interests would be patently wrong. To say that it can only do so if the operation is 'therapeutic' as opposed to 'non­ therapeutic' is to divert attention from the true issue, which is whether t he o pera t i o n is in the ward's best interest, and !turn it into al debate as to where the line is to be drawn between 'therapeutic and 'non-therapeutic'.

He rejected the Canadian Supreme Court's rights analysis, and focused on the insignificance of rights in this context and the potential harm that could result. He dismissed the argument by stating that: The Supre me Court of Canada in Re Eve (Eve, 1 986) at 5, refers . . . to 'the great privilege of giving birth'. The sad fact i n . . . [this I case is that the mental a nd physical handicaps under which the ward suffers effectively render her incapable of ever exercising that right or enjoying that privilege . . . I fi n d it difficult to understan d how anyone examining the facts h umanely, compassionately and objectively could reach any other conclusion. Lord Oliver interpreted the Eve decision as having challenged the notion that the best interests of the female invol ved were the primary concern . He wrote: His

(Mr J ustice LaForest's) conclusion was that sterilization should never be authoriz ed for non-therapeutic purposes under the parens patriae j uris­ diction . If i n that conclusion the expressi on 'non-therapeutic' was intended to exclude m easures taken for the necessary protection from future harm of the person over whom the jurisdiction is exercisa ble then I respectfully . . . disagree with it for i t seems to me to contradict what is the sole and paramount c riteria for the exercise o f the jurisdiction, viz the welfare and the benefit o f the ward.

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The critique o f the Canadian case b y the House o f Lords i s important to understanding what is meant by rights and citizenship when they attach to d i sa bi l i t y The two courts addressed the question from very dist i nct perspectives which led them to quite different determinations. The Canadian co urt a pp roached it from the perspective of rights and equality, while the British court conceptualized it as a welfare issue a nd found resolution in the legal concept of ' best interests' as a legitimate determination of the court and a basis for granting wardsh ip. The right which the Canadian court argued was being protected was the natural right to bear children. This right took precedence i n the court's decision o ver the right to enable sterilization to be performed without the indivioual's consent. Their argument was framed in terms of the non -therapeut ic nature of the medical procedure itsel f. This is con­ sistent with the usual legal discourse about non-therapeutic medical treatment. The Br itish court, on the other hand, p u t that right itself in question. They claimed it as a limited right, de pen de n t on the a b i l i ty to exercise it. If, as they claim, the right is limited only to those who c a n make a legiti mate case for being able to exerci se it, then they can rightly argue that it can be removed by whatever authority is put in a position to determine who can fulfil the prerequ isite on which the r i ght is based. The Canadian court recognized the context of the steril ization deci­ sion. That it is a q uestion of values was written into the decision: .

There are other reasons for a p p ro ach i ng an application for steri l ization of a mentally i ncompetent [sic] person with the utmost caution. To begin with, the decision i n vo l ve s values in an area where our soc i a l h istory clouds o u r vision and encourages many to perceive the mentally handicapped [sic] as somewhat less than human. This attitude has been a i de d and abetted by now discredited e ugen i c theories whose influence was felt in this country as well as the United States.

They thereby put in question the concept that a right is de pe nde nt on the a bility of those who have to e xercise it a condition that is not otherwise conventional l y a cc e pted. But even i f it were j ust to make a right dependent on the abi lity to exercise it, it would not be so from a rights perspective in the case where the l imitation of the right is based on an assumption tha t there is a prima facie class of people who will be unlikely to be a ble to exercise the right. In this case , it is the cl a ss of women who have learning difficulties. It would also not be just in the case where other c itizens were not similarly expected to be able to show that they could exercise the right according to the presumed or set criteria. There is n o re q ui rem ent that fem ales who a re not disabled unde rsta nd 'the ea usal connection between intercourse and childbi rth, -

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the na tu re of pregnancy, wh at is involved in delivery, and [ a ble! t o form

m a t e rna l insti ncts or to care for a child ' . The welfa re p r i nc i p l e that is t h e 'w e l fa r e and benefit of t he ward' and 'the be st interests of the w o m a n ' was th e principle that the Canadian court fou n d contentious. The c our t made the a rgument t ha t the 'best interests of the w o m a n ' ou gh t to be fr a m e d in terms of her ri g h t to bear c h i l d r en and t h e preservation of that ri g h t o ve r t h e rig ht of the s ta te to interfere w i t h in the p a ramete rs of the parens patriae power. The claim by the Eng l i sh court that the 'best i n t e re sts' test c o u l d be s u bstitu t ed for the mo re st ri ngent consent procedures required for m e d i c a l treatment that was non-the rapeutic e masc u l a te d the l o n g h i st o r y of l e g a l j urisprudence i n medical law and enabled the label of learni ng d i ffic u lt y to ov e r r i de t r a d i ti o nal le ga l p r ot e ct i on s for individuals i n medical tre a tm e n t . In many n a ti o n s , custom and laws have b ee n in p l a c e to p rote ct those too infirm or too i nc a p a bl e to protest their fu ndamental deprivation. But in the process of ' protecting', such laws and c us to m s someti mes put p eo p l e i n t h e pos i t i on of ha vi ng to prove that they are en ti tl e d to goods and services and opportunities that are considered the rights of th e non­ disabled pop ula t io n. The result is that for many disabled pe op le , r i g h ts become p r ivi le ges to be e a rne d . T h i s mo d el o f l a w, w h ic h bestows r i ghts as 'charitable pr iv i l ege ' (Rioux 1 9 93 , 1 994 ) e m ph as i z e s benevolence and pity, and puts in pra c ti c e c o ntro l e xercised th ro u gh expert and p rofe s ­ sional decision ma ki n g . The rationale for den yi n g r i g hts is usua lly a rgued from the perspective of t h e best interests of t h e individual concerned . Th is raises some fu nda m e n ta l question s about the basis for rights entitlements, and gi ve s t h e a uthorit y in law to e x p erts to decide who o ugh t to be a ble to e xercise their r i ghts and the crite ri a one has to m ee t to be given the option to e x e r cise those rights. For the disabled individual, the decision may fall t o the k nowledge o f the 'expe rt' a bout a p a rt i c u l a r d i s a b i l i ty. Law and j urisprudence re l a t i ng t o d isa b i l i t y, by the ir chara c ter, set up a frame w o r k for the c on s i d e rat i on of social fa c ts, including t h e recognition of past discriminatory and d i ffe re nt i al responses to d i sa b led persons. So l ega l cases and their a rguments - for e xa mple , t h e c on t ra st ing cases of Eve a nd B - h e l p to focus on cl a r i fy i ng the meaning and re al i ty of human rights and c i t i ze n sh i p for disabled people . They sugge s t that there is, at least in some places and in some l egal circles, an attempt to move beyond impairment as the sole criterion for the exercise of r ights. The c ou r ts a n d l eg i slatu r e s i n o t h e r countries are also struggling with how to put r i g h ts into practi ce , and with w h a t huma n rights and ci ti ze n ­ ship mean w hen disability beco m es part of the consideration. It is telling th a t the resolution of th e se issues for non-disabled or non-identified d isabled people is no t an issue in the same m a n n e r. This is where th e

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questions at the margins become central to the e xercise of human rights and citizenship and the places where it becomes clear how rights are infringed and the exercise of c it i z enshi p restricted on the basi s of di sa b i l­ ity. In a similar case in Australia ( Marion, 1 9 92 ) , the court acknowledged that steril ization was not about medical issues per se, but rather gender issues and disa bil i ty discrimination ( B r ad y et al. 200 1 ) . The court de­ c i d ed in Marion that the scope of parent a l a uthority did not extend to special medical procedures, and that steril ization of children requires a jud i ci a l or quasi-judicial a uthority in a l l cases. While it clearl y articulated the need for heightened accountability in th i s type of decision mak ing, it exp ressed the i s s ue s as the balancing of the right of bodil y integrity of the child with the family interests and with the child welfa re approach, using the ' best interests of the child' as the paramount principle for decision making. The balance of the s oc ial and mora l issues i n this case can be d i st i ngu i shed from both the Engl i s h and the Canadian decision. The result has been an individual ized case-by-case approach to deter­ mining when ste r i l i z a t i on is j ustifiable. The requirement of court author­ ization e n s u res a hearing from those experienced in d i fferent ways in the care of those with [an i intellectual d isa b ili ty and from those with experi­ ence of the long term social and psychological effects of sterilization' ( Marion, 1 9 92 at 25 9 ) . The H igh Court prescribed guiding principles, which are the guidelines to be followed by the court authorizing the procedure. The guiding princ iples are: '

•

•

•

The issue for the court in c onsider i ng whether to consent to a steril­ ization p rocedure i s whether i n all the ci rcumsta nces of the particular child the procedure is in the child's best interests ( Marion, 1 992 at 259). Steri l i z ation procedures shou ld never be authorized un less s ome compe l l ing justification is identified a nd d em o n s trate d ' ( Marion, 1 992 at 26 8 ) . To come to the view that a steri lization p roce d ure is in a chi ld's best interests, the court has to be sa t isfied that sterilization is a step of 'last resort ', o r in other words that 'alternative and less invasive p roc e d ­ ures have a l l fa iled or it i s certa i n that no other procedure or treat­ ment will work ' ( Marian, 1 9 9 2 at 2 5 9-6 0 ) . '

Significa ntly, the court recogni zed t h e policy inherent in past discrimin­ a tory practices related to d i sa b i l i ty and put sterili zation i n its broader

2 1 6 Marcia Rioux context, i ncluding the h istory of the cugl'll ics movement of the early part of the twentieth century. The funda menta l pri m: i p l c of hodily integrity was acknowledged as having equa l importance for d isa bled persons as it has for others, therehy inherently recognizing their equal va l ue and entitlement a s citizens. The court, to preser ve the conventional notion of family privacy and autonomy, balanced the child's right to bodily integrity with the interests of the fam ily. The court, however, still held the child's best i nterests to be the over­ riding principle for decision making. 'Some commentators see l this] as endorsing an approach to deci sion making in these matters based on fundamental human rights, whereas others see it as endorsing a paternal­ istic child welfare approach' ( Brady et al. 200 1 : 7). There is general agreement that this has the potential for discrepancies in outcomes for children.

Citizenship These cases provide a way in to understanding how concepts of citizen­ ship and the consequent rights have been applied in the c ase of d isabled people. Citizenship determines the conditions for full membership and inclusion in a society. The mea n i ng of citizenshi p touches on the defin ­ ition of the community and the conditions of inclusion a nd exclusion that is, who belongs and under what conditions. Claims for c itizenship then can be seen as claims for mem be rship, for determining who i s in and who i s out. Setting the boundaries of citizenship frames the rights and responsibilities of citizens and the elements of both state and individual responsibil ity. The boundaries of citizenship have historically determined the relationship among individuals who share a relationship with a state and between the individual and the state (Jensen and Papillon 2000 ) . There i s n o universally agreed-upon notion of citizenship, although the many definitions share commonal ities. A u seful definition for our pur­ poses is one that presents it as a dynamic relationship along three com­ plementary d imensions: rights and responsibilities, access and belonging (Jensen and Phil lips 1 99 6 ) . Kymlinka and Norman ( 1 99 5 : 2 8 3 ) used a two-dimensional approach, rights and belonging. Marshall ( 1 96 3 ) intro­ duced the notion that in addition to civil rights ( freedom of speech, mobi lity, religion and association; the right to enter contracts; and the right to due process of law) and political rights (the right to vote and to participate in elections) conferred on indivi duals, citizenship also con­ ferred a status on an individual that entitles them to soc i a l and economic security. 'Soc ial citizenship was p resented as a status that recognized the

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individual's rights to be included i n the institutions of society, to have basic needs met, to be car ed for when needed, to develop capacities and to make contributions to society' ( Roeher 1 99 3 ) . Social righ ts included such rights as the right to education, a ccess to housing and health services, a nd i ncome security. Citizenship p resumes equality between citizens, as w e ll as e q uality in the way in which the sta te operates in relation to i ndi v i d ua l s . Citizens are presumed to be equal in rights . Thus, the state gu a r a n tees e q ual ity by making rights and respo n sibilities equa lly available to all citi zens . To e nsu re social rights, then, requires more than formal equality (equa l treatment); it requires equa l i ty i n practice - that i s, equality of results ( Rioux 1 994) . Rights and responsibility as elements of c i tizensh i p entai l that there b e some way of gu a ra n teeing that they can b e realized, i f they are not to be hollow rig h ts . The i n stituti ons of socie ty, both the political institutions and social i n s t itutions such as school s, the l a bour market, and health care have to be able to guarantee the r eali za tion of those r i ght s . A citizen al s o has to h a v e both the right and the capacity to participate. Di sa bled people tend to lack both . They lack the right as a consequence of lega l structures that assume an inherent inca pac i t y and u se lega l n o tio n s of p a tern a l ism t o safe gua rd them. The y trade rights for c harity ( Herr 1 977; Rioux 1 993 ) . The capacity to participate is restricted by lega l, social and physical barriers to participation t h a t result from insti­ tutional design and the l ack of su p p o rt provided by the state an d com­ munity to those with disabil ities. The third e l ement of citizenship, the element of belonging, usually refers to being part o f a specific p o l it i c a l community, to participate in its economic and social life and to enjoy its support in case of need. Ci tizenship defines the

boundaries of belonging, giving specific recognition and status to the ones entitled to participate and benefit from the po litica l community. From the time of ancient Greece, the status of citizen identified those who were part of the community, distinguishing them from those excluded from it, whether because they were strangers or because they were not deemed deserving. (Jensen a nd Papillon 2000: 1 1 )

The disa bled sta tus has a l most uni v e r sa ll y been a cond iti o n that has been us e d as a rat ionale for disen t i tli n g people from c itizensh i p based on an ethical a rgument of who is de s e rvi ng . Claims to p rotec t ion from harm fr om sel f or others a n d to se rv i ce s have bee n more widely availa ble to disabled pe o ple than has a cla i m to citizenship. Th is is certa i n l y the case in the We s t e r n industrial ized states, where the s t a t u s of 'worthy poor' led to some entitlements bu t not to the exercise of citi zens h i p status. In many

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cases, there are sti l l rights to serv ices, hut not r i gh t s to ci t i ze nsh i p . The cou rt in E ng l and i n its find i ng in Re lJ w a s following th i s reasoning, in particular when it arg u e d that there was n o need to c o ns i d e r the right of an i n tellectually disa b l e d wom a n not to he steri l ized , beca use the issue is a bout pro te c t i ng a woman in whose best i nt e re s t s the a cti o n is being t a k en. Incl usion, as it i s used here, d oe s not s u g ge s t homogeniza tion of the po p u la ti on, b u t rec ogn i zes di fferent i al r ights and that di ffe re nce has to be accommodated for citizenship and rights to be a c h i eve d ( M i now 1 990; Sachs 1 996 ) . The s teri l iza ti on cases suggest ways in which c i tizen s hip and t h e consequent ri ghts have been c i rcu m sc ri b e d for disabled pe ople. First, ec on o mic globalization has had an impa ct on li mi t i ng citizenship and its attached rights. Second, ri ght s a re made dependent on normative standards and on cu sto m a ry practice. In this second case, a new l egal status has been substituted that either does not carry c i t izensh i p or ca rrie s a re s tri c t e d form of c itizen s h ip. This happens when r i gh t s are depe n d e nt on formal e q u a li t y or eq u a l treatment or where an i nd i v id u a l is expected to show some thresh ol d capacity to 'responsi bly' exercise th e right be fore being entitled to it.

Globalization There is a growing literature that a rgues that the so cia l bon d of citizen­ ship and the e ffective e xe rc i s e of rights a re bei ng cha l l eng ed as a res u l t of gl o baliza t i o n . As states are becoming i nc rea s i ngl y less a u tono m o u s and self-governing, as a res u lt of structura l readj u stment ( Esping-Andersen 1 9 8 5 ; Kau l et a l . 1 99 9 ) , international mo net a ry systems and global tra d i n g p o lic i e s, the relationship of the i n di vi dua l to the s ta t e is much less c l ea r. The boundaries of citizenship and the i ncumbent right s are no l onge r seen as n ecessa r il y within the i n flu ence of the st ate, as national policies b ecom e less central to economic deve lopment and democratic deve lopme n t. As ec on omic effectiveness and e fficiency and monetary crises become state priorities, there has been widespread a cc e p t an ce of privatizing the impacts of poverty, lack of education, is ol at i on and neglect of those who a re unable to contribute economically. This h a s had a s i gn i fic a nt im pact on those with disabilities. I nc reasing ly in this context, there is evidence that disa b i lity is being privatized ( Ri oux and Zubrow 200 1 ). The shrink­ ing publ i c doma i n excludes those who are i n need or who requi re insti­ t u ti o nal restructuring to pa rt i ci p a t e in the soc i a l , economic and p o li t ica l life of the state and to e x erc is e citize nship and rights. The ec o n omi c

Disability, Citizenship

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rationale for privatizing the issue o f disa bility has become both politically and functionally useful for the globalization of capital and for govern­ ments that are downsizing, decentral izi ng and dealing with i mposed debt restructuring and liberalization. While 'the public domain has been reoriented to i ncorporate market machinery into its activities; it has a lso undergone a change in goals which are no longer committed to a socio-political perspective that covers the values of equity and social justice' (Arora 200 1 : 23; Kuttner 1 984). The narrower perspectives of efficiency and profitability have replaced these goals. States have then a rbitrarily d isowned their responsi­ bility towa rds meeting the basic needs of citizens. Deficit reduction is argued to be a greater socia l good than social j ustice and basic rights (Kuttncr 1 9 84 ) . Ind ividual self-sufficiency triumphs in this scheme as a va lued economic and cultural commodity. Consequently, social well­ being has effectively shifted from a public good to a private good, and social activities - hea lth, education, housing, jobs, job security, etc. - are privatized and run with a profit motive as the norm . Efforts towards legitimating these changes continue to be made through policy aimed at replacing the discourse of basic rights with that of efficiency and profit­ abil ity, often used interchangeably. Social concerns, from this vantage point, a re not supposed to i nterfere w ith economic processes of the market or the state. This is meant to increase efficiency. The question of access to this e fficiency is not cons1dered important. Access comes to be defined as an individual problem not a social concern . . . many social problems a re simply dismissed as ind i vidual problems, cal l i ng for indi vidual sol utions. UnempiO)'ment becomes a problem of acquiring skills, insecurity i n jobs a matter of upgrading skills, hea lth and education more a subject of consciousness raisi ng. Structural content of problems facing the society is thereby de· linked from everyth ing except ma rket opportunities. Ma rkets themselves become an im porta nt social concern when redefinition of issues cre ates legitimacy for them. They a re expected to answer social problems but through their own definition of i ssues, through individual iza tion, so to say. ( A r o r a 200 1 : 29) Health is n o t simply turned i n to a business with growing access on market orienta tion; implicit in th i s process is its loss of status as a right. It is this denial of meaning of citizensh i p thro u gh a denial of even basic rights that is the most disturbing i m plication of libera l ization. ( Arora 200 1 : 3 2 )

The fai l ure of t h e economic li hera l ization and reforms p rogramme of the 1 990s ( D rachc 200 I ) to ta ke an integrated view of econom ic and social

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policy accounts for the trend towards redefinition of many problems as individual problems rather than soc ial concerns, thereby denying the responsibil ity of state to even address the m . Thi s has had a significant impact on the exercise of rights and citizenship fo r disabled people, who have a history of exclusion that is being further entrenched by the supremacy of economic policy.

Non-rights-bearing citizens Rights and citizenship have often been restricted for disa bled persons by the argument that rights a rc extended to people only to the extent to which they can show a capacity to exercise them. United Nations instru­ ments created specifically for d isabled people in the 1 970s had clauses that limited the full exercise of rights by incorporating clauses that l i mited rights 'to the extent possi ble' . The clause covered both the cap­ acity of the individual to exercise the rights and the capacity of the state to provide support for their exercise. See specifically the Declaration on the Rights of Mentally Retarded Persons ( 1 97 1 ) and the UN Declaration on the Rights of Disabled Persons ( 1 975 ) . This is precisely the argument of the English court in Re B. When disability is seen as a permanent status in which the impairment is the locus of the disability, then there is a strong argument for such restriction. When disability is recognized as a social construct, the functional incapacity resulting not from individua l i mpairment but as a consequence of social relationship, the argument for restricting citizenship and rights is not sustainable. Equa l i ty requires that focus n ot only be d i r e c te d at ' i l l ness' or 'impai rment' but also at activity a nd participation. Unless [disab led people] are treate d with dignity and re spect , there is little h o pe that the struc t u ral features of society will be re-moulded to incorporate accommodations to i ncl ud e them. (Jones a n d Ma rks 2000: 1 53 )

The history of this type o f exclusion of i ndividuals in receipt of relief can be found, for example, under the English Poor Laws, which excluded those who were poor from citizenship. The Poor Law treated the claims of the poor, not a s a n integral p a rt of the

rights of the citizen, but as an alternative to them - as cla i m s, which could

be met only if the claimants ceased to be c i t izen s in any true sense of the

word. For pa u p e rs forfeited in prac t ice the c i vil right of persona l li berty, by inte rnment in the w o r k h o use , and they forfeited by law any p o l i tic a l rights t he y might possess. (Ma rs h a l l 1 96 3 : 8 8 )

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Full citizenshi p required the capacity to be self-supporti ng and fully responsible. Whi le there has been a shift from the 'poor relief' of the English Poor Laws and their pretenders in other nations, such as Canada and the United States, wel fa re laws and disabil ity benefits i n many countries stil l require that disabled people p rove that they are perman­ ently incapable of working ( limiting the right to work) and require that people l ive in designated housing and receive social programmes through the agency that filters the state benefits as a condition of receiving them (l imiting the right to choice of personal life-style or self-determination ) . Means testing as a method o f determining disability benefits is not uncommon, and it limits entitl ement to own property and other benefits of citizenship. The social rights of citizenship have consequently been restricted for disabled people by the context in which disabil ity is viewed. The provi sion of public services such as education, health care, hous­ ing and income support is rarely seen in terms of promoting human rights. While the idea of a national minimum standard of living a s a right of ci tizenship has been an important underpinning of the wel fare state in i ndustrialized democracies since World War 11, d isabled people, preci sely bec au se of their disabled status, have not had access to these services as they a re provided to others (with parallel systems of services being esta bl ished for those with disabilities) or to the same level of services. They have not been included within the planning of services and support of generic services, but have been provided for, if at all, outside the para meters of the legitimate boundaries of the rights-bearing citizens. Services for disabled persons have, then, been provided a s char­ itable benefits, n ot as part of the state mandate to provide for its citizens. Claims of out-of-control expenditures that threaten economic growth have been used by governments as a basis for re-eva luating the provision of services and for, in some cases, redefining what is a disabil ity. The inabil ity of governments to support their current levels of public expend­ iture on such services has there fore been used as an a rgument for down­ sizing . The notion of social citizenship, one that i ncorporates a n element of entitlem ent, has been argued by the 'cost-cutters' (Mende l son 1 99 3 ) , and those t r y i ng to limit the role of the state, to encourage citizens to take but not give, to di sengage from the la bour force, and to be willing to l i ve off soc ial assi sta nce. The 'cost-cutters' a rgue that it is necessary to rei ntro­ duce the notion of respons i bil ity into citizenship. This has led to the increasing privatization of social d isadvantage. This is the argument underlying the reasoning of both the English and the Austra l i a n courts with respect t o sterilization a nd the m echanism for transforming disabled people into non- rights-bea ring citizens.

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There has been i nc reasing n:cogmunn, however, th a t economic exclusion a n J poverty a ffect the c a pacity of the in d i v i d u a l to exercise citizens h i p . In some countrie s , policies have been enacted that require tax expen d i tures to pro v i d e the support that disabled people need to exercise their cit i zensh i p . For example, t he Americans with Disa bi lities Act ( 1 990) mandates expendi tures on m a k ing the society accessible. Human rights legislation in a number of countries a lso makes provision for the redress of tho se who have been disadva ntaged and for de c is i ons that require expenditure to enable citizens to participate in thei r societies. Th e se develop ment s enhance both the ability to exercise citizenship ri ght s and to ta k e on s oc ia l responsi bilities. Recent reflections on the im p o rt a nce of social policy in c i ti ze n shi p can be seen in a statement s uch as t he followi n g in Britain's Prime Min ister Tony Blair's New Brita in: My Vision of a Young Country ( 1 9 96 : 1 ) : Peo ple a re not se p a ra te economic actors competing i n the ma r ketp lace of life . They are citizens of a community. We are social be i n gs. We develop the moral power of personal responsibility for each other and ourselves . ' The conse qu e nces of exc lu sion a nd poverty for access to the ful l rights of citizenship are at least recognized in theory, even if they are not yet fully ameliorated for the most marginalized groups, i ncludi n g dis a b l ed p erso ns . The fiction of the rights of citizenship is exposed when there a re social, lega l and political mechanisms for enabling people to be declared non­ c i t ize n s i n relation to the exercise of some rights. The fiction is also ex po sed when meaningful access limits the level of partici pation, whether due to economic or other reasons, for a particular group. Both these circumstances have faced disabled people ex pect ing to exercise their ci tizensh ip '

.

Globalizing social rights Both the trend t owa rd globalization and the legal-social recognition of a class of non-rights- bearing citizens have had an impact on the exercise of citizenship for disa bled people. The result for disabled people has been the denia l of their citizensh i p and the r igh ts that would normally be accorded to others. This has occurred both t hrough benign neglect and through the systemic denial of any attempts to carry out structu ral adj ustment to enable their participation a nd through the ongoing, nor­ mative and legal a ssumptions of incapacity that have led to charita ble support.

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An a lte rnati v e to these l i m i ting approaches to cit izens h i p is to intro­ duce notions a bout the extent and degree of r i ghts violations that can be documented and the i m p l i c ations that this has for soc i a l and economic development. The crisis is not then an economic c ris i s, but a crisis of soc i a l ju st i c e, a crisis of e q u a lity and a crisis of fai rness. This leads to questions ab out why some people have so m uch and some so little; why power rests in the hands of only a few; why j obs depend on colour, race and able- bodiedness; why learning is limited to sub j ects that measure people as ec o no mi c entities or c on tri b u tors and so on. The importance of parity of social sustainability wi t h issues of econom ic and environmental sustainability becom es evident when these q u estions a re ra i sed. The i ncorporati o n of s oc ia l rights within the parame ters of human rights in the Un iv e rsal Decla rat i o n o n Hum a n R i g hts , enacted by t he United Natio ns i n 1 948 , wa s a s i gnifi cant development. Michael lgna t ieff in The Rights Revolution (2000) held that the d ec larat i o n a l tered the balance between nationa l sovereignty and individual rights. With the declaration, the rights of individuals were suppose d to prevail over the rights of states when those states engaged in abominable p ractices . This m ig h t be the most revolutionary of a l l the changes tha t have ta ken place . . . . With each passing yea r, we get c loser to a new dispensation in wh i c h the sovereign rights o f states a re conditional u pon there being a dequ a te p ro t ecti ons for the basic human rights of citizens. ( lgnatieff

2000: 4 9 )

The decla rati on provided a starting point for recognizing t h e globaliza­ tion of social rights - the rights of every individua l to a basic minimum standa rd of l iv i ng commensurate with human d ign ity and a sense of inclu sion in the comm unity (Mishra 200 1 ) . lt i s arguably a global social cha rter despi te the fact that its system o f ratification and i mplementation is v ol u nt a r y, which focuses national social pol i c y on a set of i nternational no rm s and standa rds , initiatives and developments, a i med at establishi ng social rights. Th is recognizes the poten t ial of social a n d economic pol icy as social i n vestment to contri bute to t he spurring o f human capital a nd there fore to econom ic growth . Two major covenants of the United Nations, the I nternati onal Coven­ an t on Ci v i l and Pol itical R i ghts (ICCPR ) and the International Covenant o f Eco n o m i c , Soc i a l , and Pol i tical Rights ( ICESPR) h a ve established the framework for the ad v ancement of human rights w o rldwid e, aimed at the institutiona lization of a set of universal nor ms with i n each nation­ state. These two covenants we re ado pte d by the United Nations i n 1 966. I t took a n other ten years fo r them to rece i ve t h e m i n i m u m of thi rty-five

224 Marcia

Ricmx

ratifications to come i n to fonT . 1\y J 9 'J 9 about t h ree-q ua rters ( 1 4 1 out of 1 85 ) of the m e m ber states of the U N had ratified the ICESPR. It was in the late 1 980s that a system of supervising compl iance with the covenant was put in place. The concept of global soc i a l rights is premissed on the notion that there are certain fundamental ba sic needs w h ich an individ­ ual ought to be entitled to have met as a human being. The ICESPR begins to move towa rds the ent renchment of social rights on a global scale. Its i mplementation, however, involves a consideration of a nation's material wealth. Th e universa l validity o f the covenant is subject to the economic constraints of the individua l nation-state. Thus the c ovenant acknowledges that states are expected to ach ieve the rights enumerated ' progressively' and to the 'maximum of avail­ able resources ' . While this acknowledges the significant disparity be­ tween the economic developments of individual nations, it prov ides no mechanism to determine how such a calculation is to be made. The expert comm ittee a ppointed by the Economic and Social Council ( ECOSOC) oversees compliance with the cov en a n t . In General Comment no. 5 ( 1 994 ) , the committee specified core obligations under the covenant to 'ensure the satisfaction of, at the very least, minimum essential levels of each of the rights', which it is incumbent on the states to ensure . These core obligations include essenti a l foodstuffs, essentia l primary health care, basic shelter and housing, and basic forms of education . What 'essential' and 'basic' mean in the general comment is not made clear. The formula for calculating what a country can reasona bly invest in even these minimal core obl igations has not been worked out; nor has the formula for deciding the degree of availa ble resources and expenditure that wou ld be requi red by econom ically advantaged nations. Which types of ' resource constraints' would entitle a lesser standard of enforcement of the covenant is a lso left unanswered. Despite these l imitations, these instruments put soc i a l rights on a par with the traditional liberal rights of civil and political li berties, and set a normative standard that all nations honour their commitment to these substa ntive rights, without distinction based on category, i ncluding disability. They subject the social policy of nation-states, at least nomin­ ally, to international norms and monitoring. In the case of d isa bil i ty, this has a particu l a r consequence, because the conventional assumptions a bout disa bi lity as a restrictive condition attri buta ble singularly to the inherent biological or medical condition of the person individualize the discrimination, including the restrictions on rights and citizenship. This is a c ross-national phenomenon. The social pol icy of pa rticular states is generally based on notions of disability as an individual path­ ology ( Oiiver 1 990; Rioux 1 997; Barnes 1 999), and is legitim ized

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by scientific rationalization of incapacity. The significance of bi lateral and multilatera l aid as well as i nternational NGO aid work in the field of d isability has resulted in entrenching conventional notions of disability in the types of program mes that have been funded in developing coun­ tr ies. In some cases, this has supported notions of limited citizenship and s ocial rights by develop i ng services and facilities based on charity and soci al development models, rather than rights models. Consequently, to promote h uman rights and citizenship for disabled people requires the support of international norms. The entrenched globa l i zation of science and economics that have supported l i m iting rights and citizenship of disabled people underscores the claim for globalizing social rights. Some argue that this a nticipates the begi nning of a global citizenship based not on nationhood but on personhood (Jensen and Papillon 2000 ) . For disa bled people who have been caught in a definition of thei r status as static, unchanging, individua l and biomedically based, and on the strength of such scientific notions have had governments claim that it costs too much in the current economic climate to entrench their rights and citizenship, this has importa nt impl ications. It does not fol low from this that it is n ecessary for the individual to a p peal only to global rights, and not to the benefits of citi zensh i p found in the state apparatus. If science is global, then so too should there be the i nstitutionalization of a set of human rights, enforceable at the national level . It i s an argument for the accept­ ance of i n te rnational norms and for internationa l mon i toring of those norms and standards. If economic and scientific globalization dis­ proportionately disadvantage some c lasses of people, then it is reason­ a ble to argue that social rights ought a lso to be globalized and moni tore d. The way governments allocate their resources is a reflection of their inter pretation of citizenship and rights and the role of the state. The devel opm ent and p rotection of social rights - that is, a minimum standard of l i fe as an entitlement - is fundamental to social j ustice. Social globa lization is not so m uch a new idea as one that needs to be pursued with renewed vigour and clarity in the face of economic globalization. Disa bled people have never been included in the mainstream of social rights. Trad itiona lly their issues have been relegated to social develop­ m ent, to c h a rity, to di spensation or to the determination of their be st interes ts. But econom ic l i beralization and globalization have high­ lighted the ex tent to which some peop le are excluded through the denial o f their l i berties and the restriction of participation i n society. Those fundamental freedoms that governments promise to their

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citize n s in demm.: ra..:ics m u st also he protc..:tcd for those w i t h disabil­ ities .

REFERENCES

Arora, D. 200 1 : website. Ins titu te for Swdies in Industrial Det'elopment, Delh i and Robarts Centre for Canadian Studies, York University. Blair, T. 1 996: New B ritain : My Visi o n of a Yo u ng Country. London: Fourth Estate . Brady, S., Britton, J . and Grover, S . 200 1 : A R ep o rt Commissioned by the Sex

Discrimination Commissioner and the Disability Discrimination Co mmis ­ sioner at the Human Righ ts and Equal Opportunity Com mission . Sydney. Drache, D. (ed . ) 200 1 : The Market and the P u blic Domain: Global Govemance and the Asymmetry of P owe r. London: Routledge. Esping-Andersen, G. 1 9 8 5 :

Politics against Markets: The Social Democratic

Road to Po wer. Princeton: Princeton University Press.

Herr, S. 1 977: Rights into action: implementing the human rights of the mentally handicapped. Catho lic University Law Review, 26, 203-3 18 . lgnatieff, M. 2000: The Rights Revolution. Toronto: House of Anansi Press. Jensen, J. and Papi llon, M. 20 00 : website. The Canadian Policy R esea rch Net­ works.

Jensen, J. and Phillips, S. D. 1 9 96: Regime shift: new citizenship practices in Canada. International journal of Canadian S tudies , 1 4 , 1 1 1 -36. Jones, M. and Basser Marks, L . 2000: Valuing people through law - whatever happened to Marion? In Marks (ed.), Law in Co n tex t Special Issues: Explor­ atio ns on Law and Disability in Australia, Sydney: Federation Press, 147-80. Kaul, 1., Grun berg, I . and Stern, M. A. 1 999: Global Public Goods: International Co-operation in the 2 1 st Century. New York: United Nations Development Program. Kuttner, R. 1 98 4 : The Economic Illusion: False Choices be t ween Prosperity and Social Justice. Boston: Houghton Mifflin. Kymlinka, W. and Norman, W. 1 9 95 : Return of the citizen: a survey of recent work on citizenship theory. In R. Beiner (ed.), Theorizing Citizenship, Albany, NY: State University of New York Press, 2 83-322. Marshall, T. H. 1 9 6 3: Citizenship and social class. I n T. H. Marshall (ed. ), Sociology at the Crossroads and Other Essays, London: Heinemann. Mendelson, M . 1 9 9 3 : Social Policy in Real Time . I n L. Bella (ed . ) Rethinking Social Welfare : People. Policy and Practice. Newfoundland: Dicks and Company Ltd, 5-2 2 . Minow, M . 1 990: Making A ll the Difference: Inclusion, Exclusion and American Law. lthaca, NY: Cornell University Press. Mishra, R. 200 1 : Globalizing social rights. Robarts Cen tre for Canadian Studies website. Oliver, M. 1 9 90 : The Polit ics of D isa blem ent. Basingstoke: Macmillan.

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Rioux, M . H. 1 990: Sterilization and mental handicap: a rights issue. Jou r nal of Leisurability, 1 7, 3-1 1 . Rioux, M . H . 1 993: Exchanging charity for rights: the challenge for the next decade. British Institute of Learning Disabilities, 8 9, 1 - 8 . Rioux, M. H. 1 994: Towards a concept of equality of well-being: overcoming the s oc i a l and legal construction of inequality. Canadian Journal of Law and Jurisprudence, 1 27-4 7.

R io ux, M. H. 1 9 9 7 : Disability: the place of judgement in a world of fact. Journal of lntellectttal Disability Research, 4 1 , 1 02- 1 1 . Rioux, M. H . forthcoming: On second thoughts: constructi ng knowledge, law, disa b i l i ty an d inequality. In S . S. Herr et al. (eds), Different but Equal: The Rights of Persons with Intellectual Disability, Oxford: Oxford University Press. Rioux, M. H. and Zubrow, E. 200 1 : Social disability and the public good. In D. Drache (ed . ) , The Market and the Public Domain: Global Governance and the Asymmetry of Power, London: Routledge, 1 4 8 -71 . Roeher, I . 1 99 3 : Social Well-being: A Paradigm for Reform. Toronto: R oe her Institute. Sachs, A. 1 996 : Human rights in the twenty first century: real dichotomies, false antagonism. In Human Rights in the 2 1 st CentUT)', Ottawa: Canadian Institute for the Administration of Justice.

12 Emancipatory Disability Research

Geof Mercer

Introduction The a lternati ve conceptual framework for understanding disa bility that emerged in the 1 9 60s and 1 970s shifted a ttention to the ways in which a 'disabling society' rather than individual impairments contributed to the exclusion of disabled people from everyday social life. By the late 1 9 80s, disabled people argued for an extension of t he notion of social ba rriers to a critique of contemporary resea rch on disability. This resulted in the generation of a new emancipato ry research paradigm that complemented radical, socio-political models of disability. This chapter w i l l review key issues in the emergence of emancipatory disability research with particular reference to the British literature . The discussion begins by outlining competing paradigms of social inquiry, and highl ights the formative influence of critical theorists on those writers appraising the defining features of a radica l approach to doing disability research. The disc ussion then concentrates on the issues raised when moving from theorizing to understanding the products of d i sability resea rch and the importance of attending to methodo­ logical as well as epistemologica l questions. It argues, against recently expressed pessi mistic concerns, that 'good' , openly partisa n, emancipa­ tory research is a ' realistic goa l ' that should not be weighed down with an 'impossible dream' of what can be achieved by research alone ( Oiiver 1 9 97).

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The parasite people

From the domin a nt pe rs pec tive , disa b il i t y w a s e q u a te d with 'undesirable d ifference' and individual functional li m i ta t i o n s . Hence it located the 'solution' primarily in me d ical and allied p ro fess i ona l reha bilitation. This orthodoxy un d erpi nne d a s y s tem that condemned disabled pe o p l e to the status of s econd -c l ass citizens, c haracterized by wide- ra ng i ng social exclusion from mainstream society and segregated living in resi­ d en tia l insti tutions. Criticism of this e s tabl i s h e d , individ u a l i zed a pp roach to d i sabil i t y 'took off' in E u r o p e and North A me r i c a in the 1 9 6 0s. In Britain, the U ni o n of the Phy s ic a l ly Impa i re d Agai ns t Segregatio n (UPIAS 1 976) wa s in the va ngu a rd of th ose advoc ating an a lternative socio­ po litic a l a na l y s i s . This p in - p o i n ted t h e i m p act of ' d i sabl i ng ' soc i a l and environmental barriers on peo p le with i m pairments and, more s p ecific ally, the ro l e o f n on - d i s abl ed 'experts' in c ont ro l ling their lives . The need to extend this critiqu e to the ac t i vi t i e s of m a i n s tre am re­ search experts was accentuated by the e xperiences of disa bled residents at the Le Court Cheshire Home in the south of E ng l a nd d uring t he 1 960s. They had invited the Tavistock Institute to i nvestigate l i v i ng conditions at Le Court fo l l o wing a d i s p ute with management. However, as P a u l Hunt, a resident and key player in establ ish ing UPIAS, bitterly record s , it soon became clea r that the research experts were 'definite ly not on our s i d e ' . ( 1 98 1 : 3 9 ) . Ins te ad , t h ey p la y e d the role of ' d etache d ' and 'un biased ' soc i a l scientists ( 1 9 8 1 : 3 9 ) whil e pursui ng a tra d i t i o na l , individual ap­ pro ach to d i sability. The rese a rch e rs , Eric M i l le r and Geraldine Gwynne ( 1 972), d e s cr i be themselves as trapped between two i rreconci lable inte r­ ests. For their part, the disa bled res ide nts were at a loss to understand the researchers' fa i l u re to c o ndemn an i n stit u t i on al regime that even t hey acknowledged was equivalent to ' social death' for inmates ( M i l l e r and Gwynne 1 972: 8 ) . H unt ( 1 98 1 ) c ate g o ri zed the researchers as 'parasite pe o pl e ', by siding with the oppressors, looking afte r their own p ro fes sional and a cademic interests, and leaving the residents fe e l i ng exploited and bet ra y e d . This c o ncl u sio n is ec hoed in more rece n t critiques: ' Di s ­ a b l e d peo pl e have come to see rese a rc h as a v io l atio n of thei r experience, as irreleva nt to their needs and as failing t o improve the i r material circumstances a n d q u ality of l i fe ' ( O i iver 1 9 92: 1 05 ) . Hunt a l so con­ demned the r e se a rc her s ' lack of scientific rigour, n otabl y the i r refusal to engage in an ' objec t i v e evaluation' ( 1 98 1 : 40), by wh i ch he meant the fai lure to s i d e with those experienci ng social oppressi on . Th i s g e n eral attack on tr a d ition a l resea rch as disa b l i st has a c ted a s a reference p oint to l a ter writers exploring a new co u r se for d i s a bilit y research. ­

­

23 0

Geof Mercer Paradigm wars

In the 1 980s, the l i terature o n research within the social sciences empha­ sized the deep divisions between competing perspectives ( Blaikie 1 99 3 ) . Th is was captured i n references t o ' paradigm wars' . Thus, when a new approach to disability research was articulated in the early 1 990s, it took as its reference point the contrasting ambitions and assumptions associ­ ated with the main positivist, i nterpretive and critica l theory accounts ( O l iver 1 992 ) .

Positivism Until the last decades of the twentieth century, positivism (or a revised post­ positivism ) dominated social research. Its foundations lay in nineteenth and early twentieth-century arguments that the social sciences should adopt a similar logic of inquiry to that of the natural sciences ( Blaikie 1 993; Smith 1 99 8 ) . This guided answers to central questions of ontology (what is the nature of reality?), epistemology (what is the relationship between the knower I researcher and knowledge ? ) and methodology (how does the knower I researcher go a bout obtaining knowledge about the social worl d ? ) ( Guba and Lincoln 1 994). The early formulation of positivism attracted widespread criticism and underwent important revisions while also demonstrating 'internal' differences ( Blaikie 1 993; Guba and Lincoln 1 994 ) . Yet, at its ontological core is the assumption that the social and the natural worlds contain a s ingle reality and discernible patterns and uniformities, although these vary over time and across cultures. Thi s is generally ( but not exclu­ sively) linked with a quantifying approach ( using numerical data and associated techniques and assumptions) to establish cause-and-effect re­ lationships between social phenomena. In a hypothetico-deductive meth­ odology, there is a distinctive sequence of stages: specify theory, derive hypotheses, operationalize concepts and develop measures, collect data, test hypotheses, and reassess theory. There is a further attachment to the criteria of validity, relia bility and objectivity for j udging the quality of k nowledge generated ( Smith 1 99 8 ) . Its epistemology is secured by a commitment to value neutrality and objectivity, even i f these are difficult to achieve in practice (Hammersley 2 000).

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23 1

Interpretive approach By contrast, the interpretive paradigm ( including hermeneutics and phe­ nomenology) stresses clear-cut differences between the natural and social sciences. Its unifying bel ief centres on the social construction of reality and the existence of multiple versions (ontological pluralism ) . It high­ lights everyday experiences a nd understandings. The theoretica l and research orientation is shifted from establishing causal explanations to exploring the si tu ati on s pec ifi c interpretation of social action. Particular weight is a ttached to the authent icity of lay accounts. Knowledge is not so much 'discovered' as 'produced' and refined through i nteraction (consensus bu ildin g ) between researcher and research partici­ pants ( Schwandt 1 9 94 ) . The accent is on interpretive (qualitative ) data, with an inductive buildup of concepts, research questions and theories, rather than testing hypotheses; information expressed in feeli ngs, atti­ tudes and actions; and engaging resea rcher and researched as fel low participants in producing, generating and validating meanings a bout these phenomena (Lincoln and Guba 2000 ) . -

'

'

Critical social theory A very di fferent refutation of positivist social theory and research insisted that it had become so obsessed with objectivity that the critical potential of the 'sociological imagination' to expose entrenched power relations was downgraded ( M ills 1 95 9 ) . A key contri bution of critical social theory was that it reinterpreted many seemi ng ly 'personal troubles' as more appropriately understood as 'public issues' that have their origins in wider social structures and processes. Moreover, successful knowledge claims were linked with dominant interests and social relations in s pecific social and historical contexts. An early influence was Paolo Freire ( 1 972) , who sponsored participa­ toq• research in pursuit of 'education for l i be ration' among poor people in Lati n America . He outlined a process of 'conscientization' or c ritical reflection on everyday realities and common-sense knowledge. This em­ phasized em powerment through sel f-understanding as the outcome of social investigation, education and political action (Reason 1 9 8 8 ) . It accentuated interactive or dialo gic ' methods, which went well beyond interpretive empathy for the subject and stressed the researcher's panisan involvement in emancipatory struggle s . '

23 2

Geof Mercer

This praxis orientation was epitomized by the resea rcher's participa­ tion in social movements as a means of 'raising their capacity for histor­ ical action' (Touraine 1 9 8 1 : 1 45 ) . Ta king the side of the socially excluded acted as a catalyst for investigating the interplay of theory, practice and action. In comparison with the positivist submission that pa rtial ity pro­ vided a source of contamination in research, critical theori sts h ighlighted its capacity to generate theoretical i nsights and inform pol itical practice. Thi s also underscored feminist writi ngs, such as Ma ria Mies's ( 1 983 ) account of 'conscious partial ity' in producing research k nowledge. Since the 1 970s, critical theorists and researc hers have begun to recog­ nize the breadth of social oppression beyond social class to include, for exa mple, social divisions a round ' race' and gender. Again, the rebuttal of mainstream social theory also implicated research approaches for their role in ' silencing' these di fferent forms of social inequal ity and domin­ ation (Kinche loe and McLaren 2000). In addition, the proliferation of contrasting theories of power and domination encouraged wide-ranging debates about the possibilities for emancipation and empowerment of oppressed groups. Major influences include Gramsci's disc ussion of he­ gemony and the generation of willing consent among subordinate groups to a Foucauldian emphasis on discourse and power I knowledge relations. Power is less about confrontation with an external force. It has become more diffuse and covert with the development of systems for public surveil lance and self-regulation (Foucault 1 984). This in turn has led to a reformulation of research into emancipation I empowerment as a long drawn-out process, with l ulls and reversals as well as radical advances, and no fixed end state. Most recently, the debates within critical theory have moved beyond the esta blished trinity of research paradigms. Lincoln and Guba (2000) add poststructuralist I postmodern a s wel l as participatory approaches. These offer different epistemologies (attending to previously ignored groups), novel ways of representation ( in experience and text), and innovative styles of research (and ways of determining its 'quality' or authenticity) .

Emancipatory research In probably the most influential a n d widely cited contri bution to esta b­ lishing the credentials of the new paradigm for emancipatory disability research, Mike Oliver ( 1 992 ) locates it firmly within critical t heory precepts, incl uding anti-imperialist I racist and feminist attacks on posi­ tivist and, to a lesser degree, interpretive research models, together with

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'social model ' theorizing of disability. H e follows Jurgen Ha bermas ( 1 974 ) in a rguing that the historical shi ft in research approaches - from positi vist to interpretive to critical -emanc ipatory - is und erpi n n ed by different kinds of re asoning for producing research knowledge - instru­ menta l ! technical , practical and critical ! emanc ipatory. A further link is with distinctive forms of pol i c y maki ng : engineering / p rediction ( positiv­ ist), enlightenment (interpretive ), and struggle (emancipatory). Finally, each is associated with a disti n c ti ve view of disability - individual , social and political - although in any s pecific historical conj uncture these may overlap. On this basis, traditional research is castigated for reinforcing a personal tragedy approach to disa bility that represents disabled people as victims of their individual pathology, largely passive to their circum­ stances, and as i n need of 'care a n d protection' (Oiiver 1 992; Rioux and Bach 1 994 ). The emancipatory mode is geared to praxis-oriented research that exposes social opp ressi o n and faci l itates political action to transform society (Humphries 1 997). Echoing Paul Hunt's ( 1 98 1 ) denunciation of the 'parasite people', a stark choice is outlined: 'Do researchers wish to j oin with disa bled people and use their expertise and skills i n their struggles against oppression or do they wish to continue to use these skills and expe rtise in ways in which disa bled people find oppressive?' ( O iiver 1 99 2 : 1 02 ) . Support for emancipatory struggles then translates i nto a disab ility resea rch model that stresses the following features: •

•

•

•

rejecti on of the individual model of disability and its replacement by a social model a pproach; c o nce n t ration on a partisan research approach ( so denying researcher objectivity and neutra lity) in order to facilitate the political struggles of disabled people; reversa l of the traditional researcher-researched hierarchy I social re­ lations of research production, while also chal lenging the material relations of research p rod ucti o n ; plura lism i n choice of methodologies and methods.

These points illustrate how the early writers on emancipatory disabi lity research promoted it as a radica l alternative to the positivist and inter­ pretive p a ra d i g m s , by st r ess i ng a bove a l l its commitm ent to political change and em powerment rooted in a social model approach. In com­ parison, methodologica l c riteria were do w nplayed. Hence, the choice of methods was rega rded as a subsidiary matter, and the su pport for plural­ ism did not reflect deta i led consideration of the many difficu l t issues raised when transl ating these broad a m bitions into everyday rese a rch

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practice ( Stone and P rie s t l c y 1 99 6 ) . This contrasts u n favourably with the b urgeon i ng literatu re on this subject by feminist researchers (e .g. Lather 1 99 1 ; Stanley a nd Wise 1 99 3 ; M a y n a rd 1 9 94): 'We who do empi rical researc h in the name of emanc ipatory po lit ics must d i scov er ways to connect our research me t ho d ol ogy to our theoretical concerns and polit­ ical commitments' ( Lather 1 99 1 : 1 72 ) . Even a sympathetic review of d isa b i l i ty research in the m i d - 1 9 9 0 s felt o b l iged to point out that ' no n e of the advocates of t he paradigm have yet la i d cla i m to the achievement of truly emancipatory researc h within the context of a field study' ( Stone and P r i es tl e y 1 996: 706 ) .

Social model approach The orthodoxy a mong British disa bi lity writers has been that 'the adop­ tion of a social m odel of di sa b i l i t y ' provides 'the ontologica l and epi­ ste mo logi cal basis for research production' ( P riest le y 1 997: 91 ). This confirms its c lear separation from a n i n d iv id ual or pe rs o n a l tragedy approach. It is graphically illustrated in the ' t ra n sla t i o n ' of survey ques­ t ion s addressed to disabled people by government de p artme n t s . One item from the Office of Populations, Censuses a n d Surveys ( OPCS) asked: 'Does your health problem / disabi lity a ffect your work in any way at present ? ' Its social model alternative reads, 'Do you have problems at work be c a use of the physical environment or the attitudes of others ? ' ( Oiiver 1 990: 7-8) . However, the revised questions also demonstrate the structuralist lean­ ings o f early social model ac c o unts ( Barnes et al. 1 999). Thi s has tr iggere d criticism from disa bled feminists that disabi lity research must widen its o nt o l ogical gaze to incorporate the fem inist m a x i m that the ' p er s o n al is pol i t i c a l ' and include the experience of both impairment and disability (Morris 1 992 ) . The social m ode l was also censored for ignoring or down­ play i ng differences in the experience of oppression within the disabl ed population. As mo re disciplines and theoretical perspectives entered these debates, the p a r a m e te r s of disability research became even more d i s p ara t e and contested. Most nota bly, poststructural ist accounts now offered a sig n i fic a n t competi ng d i sco u r se around emancipation . The early l iterature was inclined towa rd s a 'standpoi nt' po s it i on in which disabled people's exp er i ence s and knowledge c la i m s , at least where informed by a social model app ro ach , were reg a rde d as 'authen­ tic' . However, the focus shifted increasingly to differences in the experi­ ence of oppression among disabled p e op l e , particularly on the ba si s of age, gender and ' race ' . This effectively undermined the notion of a

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homogeneous category o f 'privileged' knowers. The spotl ight turned to competi ng discourses, voices and experiences within the disabled popu­ lation ( Corker 1 999). This has been reinforced by the poststructuralist accent on listeni ng to the range of disabled people's voices and hitherto silenced narratives. It also a l lowed for much more analytical space i n considering the fluidity o f identities a n d experiences. This has evident consequences for the conduct of disabil ity research. The social model has been furthe r criticized for exaggerating the commona l ity of different impairment groups. Deaf people, people with learning difficulties and mental health system users / survivors have all questioned the inclusiveness of the social model. This has focused atten­ tion on c ontrasting epistemologies and on competing ' knowledge claims' within the disabled population. In their review of research with mental health system survivors, Peter Beresford and Jan Wal lcraft ( 1 997) i l l us­ trate not only variation between the accounts of 'survivors' and disability writers, but also the contrasting viewpoints articulated among those with direct experience of an oppressive psychiatric system. ( An associated, but largely unexplored, issue is the choice of research strategy for disabil ity researc h with 'a ble-bod ied' people and their experiences of disabling others . ) Even so, argum ents for the i ncorporation of the diversity of disabi l ity experiences into social model resea rc h remain highly contested. Vie Finkelstei n , o n e of the m a i n a rchitects of the social barriers approach in Britain , argues against an obsession with experience, because of its overlap with impairment and individualistic concerns. Equa lly, subjective experience is not necessarily the same as critical awareness and under­ standing, and experiential studies too often ignore power relations and wider contextual factors. As a feminist critic has argued: represented as unmediated: s poken words are placed dir­ th no account given of how and w he re they c a m e from, the power relati ons involved, the publishing deals sig n ed the edi ti ng and selection processes. Or researchers take as self-evident the i d en t i t i es of those w h ose e x pe r ie n ce is being documented . . . O u r experience is part of a soc i a l , h i storica l , cultural, economic, p o lit ic a l process. ( Skeggs 1 995: 1 5 ) [ E l xpe ri ence is

ectly on a page

wi

,

Instead, F i n kclstein ties the social model and d isability research to a critical a n a l ysis of the 'inner workings of the d i sa bling society' ( 1 99 9 : 8 6 1 ) t h a t must avoid entrapment i n professiona l and service provider agendas. This underscores his condemnation of those studies that pursue emancipatory a i m s within po licy reforms of community c a re, but in so doing risk d i l uting the necessary research focus on soc ial ba rriers.

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On a different tack disa bility theorists have a lso been charged with slowness i n acknowledging the valid ity of di fferent national contexts a nd agendas in disabi l i ty theorizing and practice. A particular i nstance is provided by assertions that social model-based research is inappropriate outside Western industrial capitalist societies. For example, Emma Stone ( 1 997) reported considerable difficulties in doing emancipatory disa bi l ity research field-work in China, because it was perceived as an instrument of Western i mper i a lism and at odds with Chinese experience and culture. A stark choice beckoned for the researcher between championing the social model perspective and overriding disabled people's perceptions and experiences, or making compromi ses to salvage the research project. The originators of the socia l model did not claim that it was a compre­ hensive theory of disability. However, recent theoretical debates have s ignificant and wider implications for the conduct o f di s abil i t y researc h .

Partisanship a n d commitment t o political change Howard Becker's ( 1 967) much-quoted question, 'Whose side are we on ?', has been widely i nvoked to h ighlight the necessary pa rtisanship of disa bility research. It is bolstered by a dismissal of the ' myth' of neutral­ ity and objectivity stressed by positivists. At issue i s whether academics too often cede thei r claimed independence in order to secure their own professional position, although this needs to be set against the institu­ tional and structural constrai nts i n which resea rchers work (Barnes 1 9 96; Shakespeare 1 996; Stone and Priestley 1 996; Zarb 1 997) . The contrary position elaborated by mainstream researchers is that partisan approaches threaten a 'rampant subjecti vity where one finds only what one is predisposed to look for' ( Lather 1 99 1 : 5 2 ) . For emanc ipatory researchers, the 'conscious pa rtiality' p ro m oted b y Maria Mies ( 1 9 8 3 ) must resonate with disabled people's lived experience in an unequal society. The partisanship of disability directs it to 'expl ore and identify appropriate avenues for change' ( Finkelstein 1 999: 862), or 'gain' and empowerment (Oiiver 1 997) . This e levates outcomes as a c e n t ra l i ssue in judging research. Indeed, Oliver downgrades research in which he was i nvolved Walking into Darkness (Oiiver et a l . 1 9 8 8 ) precisely because of its lack of tangible impact on service prov ision. However, the reasons why local and national policy makers accept, ignore or rej e ct resea rch findings and recommendations are diverse and rarely within the control of the researchers, let alone the participants. Contributors to the feminist literature similarly dismiss statements that 'studies which cannot be directly linked to transformational politics a re -

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not feminist. I t raises the question a s t o how far the resea rcher is i n control of the extent a n d direction o f any change which her research might bring about' ( Maynard 1 994 : 1 7) . Moreover, research may 'suc­ ceed' or 'fail' at different levels, or have an unintended impact, with any j udge ment liable to variation over time. In most instances, there can be no guaranteed 'outcomes', except perhaps a n end-o f- research report. The same difficulties surround attempts to esta blish whether benefits have accrued to disa bled participants or disabled people more widely. The criteria for j udging disa bility research a re not so much whether it facilitated the self-empowerment of disabled people i n terms of ' individ­ ual self-assertion, upward mobil ity and the psychologica l experience of feeling powerful' (Lather 1 99 1 : 3 ). Nor is emancipatory research 'suc­ cessfu l ' on ly when it leads to a l l social barriers being overturned, so that people with impairments are liberated from the disabling society, perhaps waiti ng on a muc h longer-term evaluation of the impact, well 'after the event' (Oliver 1 99 7: 2 5 ) . Rather, empowerment and emancipation are used interchangeably and are defined in terms of revealing social barriers , changing perceptions of disability, and generating political action. Even then, em powerment I emancipation is not in the gi ft of the researcher: 'The issue then for emancipatory research is not how to empower people, but, once people have decided to empower themselves, precisely what research can then do to facilitate this p rocess ' ( Ol iver 1 992: 1 1 1 ) . By contrast, disability write rs have been quick to argue that some (disa bled and non-disa bled ) researchers have benefited professionally and materi­ ally from their involvement (as with those teaching and writing a bout disa bi lity studies ) . Indeed, the literature is replete with 'confessions' from disa bil ity researchers that they have been the chief beneficiaries of thei r work - what Fi nkelstein ( 1 999: 8 6 3 ) has aptly la bel led ' Oliver's gibe ' . This has done little to stimulate innovative research practices. One freq uently mentioned exception is the project sponsored by the British Council of Organisations of D isabled People ( BCODP) into the social exclusion of disabled people ( Barnes 1 99 1 ) . Its emancipatory cre­ dentials rested on its commitment to political change within a social model approach and accountability to disabled people through an advis­ ory gro u p of representatives from organ izations controlled b y d isa bled people. A further e m phasis was the wide-ranging dissemination of its findings to st i m u late campaigns and legislative acti on. Indeed, the priority accorded to produci ng and disseminating materials in a variety of access­ ible form ats has become a feature of emancipatory disability research. The stress o n pol itical cha nge and gai n constructs a research ' balance sheet' in w h ich oppressor and oppressed and the i r respective gains are easily identified. In concrete social conte xts, such calculations are often

23 8

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disputed. Research is not necessarily a zero-sum contest with o ne 'winner' and loser , just as among the winners / losers some gain / lose m o re than others do. Moreover, oppressors and oppressed are not al ways e a sily distinguished, or stable categories across di fferent soc ial contexts. What benefits disabled people may not advance the i n terests of other o ppress ed groups. Participants are not always agr eed on whe re their best interests lie. Nor does the failure to t r a n s form the lives of research p a rt i c ipants n ecess a r ily preclude a lack of i m pac t more widel y. Further­ more, disabled people may be implicated i n the oppression of e ach other, or espouse reactionary v i e wp o i n ts - for example, on the basis of people's age, 'race' or ge nder. What research can achieve also depends on the social and historical context. Researchers work within a range of organizati onal and struc­ tural constraints, and sometimes relat i vely minor c h a nges assume signifi­ cance. Certa i nly, i f disability research is equated solely with grandiose political pro j e c ts , it wil l miss many opportunities for a positive impact, including many pote n ti a ll y illuminating small-scale studies. '

'

Social and material relations

of research production

E arly descriptio ns of emancipatory disabi lity research targeted the ways in which researchers position themselves w ith respect to the social and materia l relations of research prod uction ( Oiiver 1 992; Zarb 1 992). The 'material relations' of resea rch productio n cover the reliance on e x tern a l funding bodies, as well as organizations that unde rta k e research, incl uding universities (Lioyd et al. 1 996; Oliver 1 997) . Typical e x pectat io n s and constraints fro m funders reinforce traditional research hierarchies and values ( Moore et al. 1 99 8 ) . However, d i sab i li ty writers h a v e concentrated on reversing entrenched social relationships. Indeed, the transformative potential of d isabil ity resea rch is equated with disa bled people being ' actively involved in determining the aims, methods and uses of the research' ( Zarb 1 997: 5 2) . Hence, researchers m ust forg o their traditional autonomy and 'learn how to put their know l edge and skills at the d i s posa l of their research subjects, for them to use in whatever way they c hoo se' ( Oiiver 1 992: 1 1 1 ) . The aspiration to break down the traditional hierarchy and build researcher accountability to disabled part i c i pants raises q uest io n s about the nature of cont r ol' and how it is 'measured'. '

1

Who controls what the res e a rc h will be about and how it will be carried out?

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How far have we come i n invol ving disabled people in the research process? What opportunities exist for disabled people to criticize the research and i nfluence future directions ? What happens to the products of the research ? ( Zarb 1 992 : 1 2 8 )

A continuum spanni ng 'wea k ' to 'strong' direction b y disabled people may be identified . Instances of disabled participants assuming full control are rare, but this has been claimed in some research studies involving groups of mental health survivors ( Chamberlain 1 98 8). In other cases, the intention has been to eradicate the distinction between researcher and researched by an emphasis on 'eo-researchers and eo-su bjects' ( Reason 1 988: 1 ) This indicates a reflective dialogue with neither side dominating the other ( Lloyd et al. 1 996 ) . Some believe tha t participatory options are the most realistic in the present pol itical and economic context (Ward 1 99 7; Zarb 1 997). However, d isa b i lity theorists in Britain demonstrate conflicting v iews of partici patory research and whether it rests on less than full control by disa bled people. Mike Oliver ( 1 992) is particularly dismissive, and equates it with playing by the rules of the system and geared to improving organizational efficiency rather than challenging esta blished values or structu res. However, this ignores the several branches of participatory (action ) research and the commitment of some variants to the 'vital link between knowledge generation, education, collective action and the empowerment of oppressed people' ( Cocks and Cockram 1 995 : 3 1 ) . This rad ica l form draws on l i beration theology, Third World community development programmes and neo-Marxist forms of critical theory (Woodiu 1 992). It highlights the active, partisan support for disadvan­ taged groups in exposing power relations and developing emancipatory action ( Kemmis a nd McTaggart 2000 ) . From this perspective, what is needed is 'a worka ble "dialogue" between the research community and disabled people in order to faci l itate the latter's empowerment' ( Ba rnes 1 992: 1 22 ) . In practice, partici patory a pproaches include many i nstructive at­ tempts to overcome the conceptual and practical difficulties in findi ng common ground between resea rchers ( perhaps from different disciplin­ ary and I or theoretica l perspectives) and resea rch participants ( Kemmis and McTagga rt 2000). These offer some ways forward to some of the key dilemmas con fronting emancipatory disa bility research. For example, how are lay and academic concepts and theories i ntegrated ? What happens when d i sa hled people insist on individualistic accounts of dis­ ability ? ( Ba rnes a nd Mercer 1 9 97; Moore et al. 1 99 8 ) . Quite simply, the .

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structural constraints and inequalities between resea rcher and resea rched are not easily elim inated, and building a trusting relationship is often problematic ( Lioyd et a l . 1 9 9 6 ) . T he disabil ity literat ure has also been very reticent to acknowledge power relations and hierarchies within research teams. Not that all disabled people have the time or inclination, even i f politically aware, t o take control of resea rch production. A graphic illustration is provided by John Swain's ( 1 995 ) description of the d i ffi­ culties he encountered in involving 1 4-1 8-year-olds in a newly opened college for students with 'special educational needs' in a disabil ity re­ search project. His experience details a more general experience of dis­ abled participants tending to defer to the 'research experts' , particu larly in a reas perceived as technical matters, such as devising research ques­ tions, collecting and analysing data , and di sseminating research: 'there was much resistance to the idea that emancipatory research should involve a reversal o f the social relations of research production' ( Priestley 1 997: 1 04 ) . In Priestley's research, his categorization as an 'independent' expert was actually exploited by the disabled people's organization to collect views from service users, as well as in the research dissemination process. Disabled participants attached more weight to bui lding a 'working partnership towards mutually beneficial outcomes' ( 1 997: 1 04-5 ) .

Participatory research w a s given a major boost b y t h e intervention o f t h e Joseph Rowntree Foundation (JRF), a maj or funder of disabil ity research. It now requires that funded projects be located within a social model of disabil ity, include significant and appropriate user involvement, and have a clear potenti a l to improve disa bled people's lives. Nota ble examples include Jenny Morris's ( 1 9 9 3 ) study of community support for disabled people and a series of studies of direct payments building on Gerry Zarb and Pamela Nadash's ( 1 994 ) infl uential work. Most recently, the National Lottery's Community Fund has become a major funder of disability research that gives priority to user-led initiatives. Even so, studies with service providers suggest that non-disabled professionals demonstrate considerable reluctance to include disabled people as eo­ researchers (Moore et al. 1 99 8 ) . A further claim i s that the pioneers of disa bility theory ignored the diversity of research contexts and participants. This has been raised extensively in studies undertaken with people with learning difficulties, where some of the most imaginative attempts to develop collaborative approaches have been implemented (Ward 1 997; Chappell 2000 ) . The absence of researchers with learning difficulties within academ ic i nsti­ tutions has also been an important factor. The spotlight has been on ways

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in which researchers (whether non-disabled or disabled ) 'take the side' of people with learning d i fficulties ( Goodley and Moore 2000 ) . This has generated a number o f inventive methodological approaches, often adopting 'advocacy' models, with people with learni ng difficulties acting as research advisers through to conducting their own research with some researcher support ( People First 1 994; Sample 1 996; March et a l . 1 997; Ward 1 997; Stalker 1 99 8; Rodgers 1 999) . The aim of emancipatory research is to ena ble participants to take more control of their l ives, to a greater or lesser degree. Ki rsten Stalker further confirms how research with people with learning difficulties has moved a considerable distance over the last decade towards recognizing them as reliable i n formants who hold 'valid opinions and have a right to express them ' and are the 'best authority on their own l ives, experiences, feel i ngs and views' ( 1 9 98: 5 ) . Nevertheless, barriers to assuming full control rema i n . There is a tendency towards acquiescence among re­ search pa rtici pants whose lives a re routinely control led by others. This raises basic methodological and ethical questions as to whether all par­ ticipants u nderstand and agree to the 'rules of engagement' in the re­ search process. Yet even this stage may not be reached, because external bodies such as public service agencies and medical ethics committees tak e decisions a bout research partici pation o n behalf of client groups such a s people with the label of learning difficulties ( Rodgers 1 99 9 ) . Similar presum ptions of i ncapacity have also applied i n research with disabled children ( Wa rd 1 997). Another important suggestion is that researchers need to allow for differing degrees of participation, both across issue areas and within specific groups. Jan Walmsley (200 1 ) suggests that col laboration is easier to achieve where the focus is on improving services rather than data analysis or theory generation. A further concern is the i mportance of making resea rch more accessi ble. While the use of Braille, large print and cassettes for people with sensory i mpairments has become more widespread, equ ivalent support for those with cognitive impairments has been fa r less w idely recognized (Ward 1 997; Goodley and Moore 2000 ) . There a re additional ba rriers to overcome i n the employment o f dis­ abled resea rchers ( O liver and Barnes 1 997; Zarb 1 997). The orga n i za­ tion of the resea rch m u st be more accommodating towards individual researc her su pport needs, within the context of a n i naccessible built environment a n d transport system. The uncertain trajectory of some impairments adds a fu rther challenge to project management. Fundi n g bodies a re not as sensi tive as they m ight b e t o such constrai nts m allocating more time and resources for disabi lity rese a rch.

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The breadth of opinion on the role of the researche r in emancipatory research may be illustrated by two very contrasting sta ndpoints. Tom Shakespeare a rgues, 'I don't really care' whether my work is rated as 'emancipatory research' . He professes to follow his own ' i ndividual and ethical standa rds, rather than trying to conform to an orthodoxy' ( 1 997: 1 8 5 ) . While welcoming 'advice and feedback', he wou l d not want 'to be accountable to anyone other than my publisher and my conscience' ( 1 997: 1 8 6 ) . In contrast, Vie Finkelstein ( 1 999) warns aga inst the emer­ gence o f a new breed of disability research 'expert' who will assume the mantle of other 'disabling' professionals unless radical changes are made to the social relations of research production. Methodology and methods matter

In this discussion, 'methods' comprise the specific techniques for data collection, such as surveys or pa rticipant observation, and analysis, while 'methodology' refers to a theory of how research should be conducted (Hard i ng 1 987). Early ela boration of emancipatory disability research tended to conflate methods and methodology and to treat both as ancil­ lary, technical matters. The contrary argument u nderlined here is that 'methodology matters' ( Stanley 1 997), and requires much more than a vague commitment to plura l i sm, whether of methodologies or m e thods The methodological criteria advanced for eval uating social research (as opposed to 'retreating' i nto relativism ) vary significantly between paradigms. In positivism, the emphasis is on .

internal validity ( i somorphism of findings with rea lity), external validity (generalisa bi lity), reliability (in the sense of stabil ity), and objectivity (dis­ tanced and neutral observer) . . . (while those within the interpretive para­ digm stress) . . . the trustworthiness criteria of credibility (paralleling internal validity), transfera bility ( pa ralleling external validity ), dependabil ­ ity (paralleli ng reliability), a n d confirmability (paralle ling objectivity ) . (Guba and Lincoln 1 994: 1 1 4 )

More recently, the sa me authors have supplemented their account by noting the recent concern with achieving 'authenticity' in both interpret­ ive and poststructuralist accounts ( Lincoln and Guba 2000). The broad i ntention is to make transparent how the research unfolds, from d esign through data collection, analysis and recommendations. The aim is a transparent and persuasive research narrative that makes the whole process more accountable and understandable t o research partici­ pants and others ( Mies 1 9 8 3 ; Stanley and Wise 1 99 3 ; Maynard 1 994 ) .

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Non eth ele ss the appli cation of forma l tests of 'qual ity control' promoted by ma i nstre am resea rch has often hidden disa blist assump tions that rarel y ackn owle dge the specific circumstances of researching disa bility (S ampl e 1 996; Stalker 1 998 ) . For the most part, disa bility resea rch h a s concentrated on participant vali datio n : that is, the involvement of disabled people in identifying res earch qu estions, col lecting data a nd dissemi nating findings. The notion of tak ing fiel d-work data back to respondents for verification is w idely rega rded as a key marker, whereas c ollectivizing the whole pro­ cess of data co l lection and analysis (except perhaps to a small advisory group ) is i n frequently practised . Not least, achieving ful l participation requ i res addit ional time and resources i f it is to prove effective. Only two of th e th i rty key activists who pro v i ded in-depth interviews for Campbell and O l i ve r's ( 1 9 96 ) study of disabil ity pol itics took up the offer to 'vali date' i nterview transcripts or read the draft manuscript. Oliver can­ di dly adm its that ' we neither had the time, energy or money to make it a wh olly coll ective production' (O i iver 1 99 7: 1 9 ) . This option may result in sub sta ntial changes in the research agenda, and possi bly its funding, som ethi ng i n stitutions a re reluctant to sanction . An other b ench-m ark has been feminist contentions that the validity of thei r met hod s is re fl ected i n the qua lity of their relationshi p with partici­ pa nts. f riendlin ess, openness and ge n eral close rapport with participa nts h a ve ac qui red a confirmatory status. Researchers record how thei r d is­ a bled pa rticipa nts expressed their appreciation that their views were tak en ser iou sly a nd they were enco u raged to express th eir 'real' feel ings (Barn es a nd Mercer 1 99 7 ) . H owever, such declara tions are i m precise ind icato rs o f 'qua l ity assura nce'. There are also ethical issues in exploit­ ing an i ndivi dual 's willingness to reveal 'private' thoughts or re l ation­ ships i n order to enhance the 'quality' of the research data . T his suggests much g reat er sensitivity to how resea rchers directly and indirectly i n fl u­ enc e t h e resea rch process (Lloyd et a l . 1 996; Davies 2000) . In practice, the probl ems of ba lancing methodological and political goals surface infreq u entl y i n the disability literature . Dis abil ity re sea rchers have a lso demonstrated a wi llingness to i ncorp­ orate new a pproac hes to col lecting, processing and analysing thei r data ( Ba rne s a nd Me rcer 1 997), including innovati ve studies with disa bled children a nd people with learning difficulties ( Wa rd 1 9 9 7 ) . Q u a l itative disab ility re se a rc hers have particula rly stressed the importa nce of choos­ i ng a d i sa bled person as inte rv iewer o r the equiva lent (Vernon 1 997 ) , but little d i sc u ss i on h a s taken place abo ut how far this matching process shoul d he e x t ended to cover, for e x a m ple, age , ethnicity, soc i a l c l a ss and type of i m pa i rm e nt.

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Having an impa i rment does not autom at ica lly give someone a n affinity with disab led people, n o r an inclination to do disa bil ity resea rc h . The cultural gul f between researchers and researched has as much to do with social indicators like class, education, employment an d general life experi­ ences a s with impairments. ( Barnes 1 992: 1 2 1 -2 )

Notwithstanding if the merits o f employing non-disabled researc hers are disputed, it is rare for anyone to contend, like Humphrey ( 2000), that research knowledge may be improved by their invol vement ( providing they start from a social model baseline ) , because taken-for-granted ideas and practices among disabled participants require detailed deconstruction. There have also been few attempts to involve research participants, beyond a small advisory committee, in collectivizing the processing and analysis of data. The excepti ons are mainly restricted to small -scale, interview-based studies, but the enduring impression is that participants defer to resea rcher expertise (Vernon 1 997). More generally, disciplinary and theoretical perspectives exacerbate the division between participants and researchers by influencing what the researcher 'hears' and how it is interpreted. This includes a decision about how far researchers will go in re-presenting or 're-authoring' lay accounts by making inferences, selecting, abstracting and reformulating what people said or ' really meant' ( Shakespeare et al. 1 996; Vernon 1 997; Corker 1 99 9 ) . Initially, exponents o f emancipatory disabil ity resea rch expressed un­ certainty a bout the relative merits of different qua ntitative and qualita­ tive research methods. 'I a m not sure whether interviews, questionnaires, participant observation, transcript analysis, etc . , are compatible or in­ compati ble w ith emancipatory resea rch' ( O l i ver 1 997: 2 1 ) . Subsequently, the majority has emulated the general trend in social research by utilizing more qual itative procedures and data. This is j ustified on the grounds that quantitative methods are inherently exploitative of research partici­ pants and produce less 'authentic ' data, in comparison with the qual ita­ tive emphasis on inter-subjectivity and non-hierarchical rel ationships. Even though there are some nota ble counter-examples, including Miller and Gwynne's ( 1 972) much-derided study of life i n a residential home, a generally dismissive attitude to the quantifying method won favour. It was forcibly expressed by critics of the OPCS surveys, who charged that reliance on postal questionnaires and structured interviews reinforced the wide gulf between research expert and lay disabled respondent (Oliver 1 990; Abberley 1 992 ) . Nevertheless, mainstream quantitative research has been widely ex­ ploited by emanc ipatory resea rc hers to e x pose the extent of d isabl i ng barriers ( Barnes 1 99 1 ) . Even within feminism, there have been growing

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claims that experientia l studies have done much less than quantitative studies to document women's social oppression ( Oa kley 2000 ) . Equally the 'qualitative turn' has been charged with discouraging researchers from devising 'participant-centred' structured interviews and surveys that might facilitate resistance to disabling barriers and attitudes (Kelly et al. 1 9 94; Maynard 1 994 ) . In addition, specific methodological issues such as sampling, data processing and constructing concepts and explan­ ations have generated little debate. A s Michele Moore and her colleagues ( 1 9 9 8 ) demonstrate, the process of doing disability research throws up many unexpected issues. One of the most significant is the degree to which presumptions of objectivity and detachment are still prevalent, while fam iliarity with the counter-assertions of emanci patory disa bility research remain unknown or contested. Again, disabi l ity debates demonstrate too little recognition of the very different sites and contexts in which research is carried out - from personal inter­ views with a small sample of disabled volun teers to a large-scale study with m any orga nizations i nvolving disabled and non-disa bled participants.

Conclusion The emanc ipatory paradigm has been adopted as a distinctive approach to doing disa bility research. This encompasses its ontological and epi­ stemological location i n a social model of disability, a n associated com ­ mitment to a partisan approach in challenging t h e social exclusion of disabled people, and a broad accountability to disabled people and their organizations. However, these have each attracted criticism from the increas i ngly diverse theoretica l traditions that now engage with disabil­ ity, wh i l e associated issues have been raised a bout the ease of translating these broad principles into research practice. There has been a pa rticular silence within the disabil ity research l itera­ ture on methodological issues, i ncluding the appropriateness and merits of spec i fic methods of data collection, processing a n d analysis. While disabil i t y re search is full of d i sclaimers along the lines that ' I n the final analysis I would not claim to have accomplished a truly "emancipatory" piece o f work ' ( Priestley 1 997: 1 05), pa rallel methodological confessions ( or dec l a ra t i ons ) arc a rari ty. A fi na l tho ught on emanci patory d i sabil ity rese a rch surrounds con­ cern s tha t i t i s proving 'an i m possible dre a m ' (Oiiver 1 997) . Disability resea rch s houl d he j u dged i n terms of its capacity to facil ita te the e m ­ powerme n t of d i sa bled people. Ce rta i n l y, it is not a n easy option, with an agree d set of epi stemological and methodological guidelines and

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standards. Eq u al l y, the disabl ing world of social barriers will not ea s i l y succumb to indi vidual emancipatory proj e c ts . Yet such research has an i mportant part to play i n c ha l l e n g in g disabling soc i a l barriers, pa rtic u ­ larly where it is unashamedly rigorous and transparent in its method­ ology and partisan in its o bjectives. REFERENCES Abbe rley, P. 1 992: Coun ti n g us out: a discussion of the OPCS disability surveys.

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Ba rn e s, C. a n d Mercer, G. (eds) 1 99 7: Doing Disability Research . Leeds: D i s a b i l ­ i t y Press . Barnes, C., Mercer, G. a n d Shakespeare,

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13 Disability, the Academy and the Inclusive Society

Colin Barnes, Mik e Oliver and Len Barton

Introduction In the introd uction to this book we described the ways in which the protracted interface between the emergent disabled people's movement and the academy helped stimulate the development of disa bil ity studies i n Brita i n a n d t h e United States i n the last decades of the twentieth century. Subsequent chapters have provided a broad overview of the current state of k nowledge with in the context of this relatively new field of inquiry, with particula r emphasis on sociol ogical influences. In this concluding chapter we examine this relationsh ip analytically, in order to explain how this particular form of knowledge production might continue to contribute to our understanding of disabil ity and, in so doing, help work toward the fu rther inclusion of disabled people in mainstream society.

Disability studies and the academy in the twenty-first century

When consideri ng the re lationship between political activism a n d the academy in the main, it is apparent that for most of its history the university has been a locus of quiet conservatism, rather than a force for radical social and political change. However, it is easy to forget that at certain times and under specific conditions, the academy has p layed a key role in the germination and n urturi ng of revolutionary soc i a l forces that, when unleashed, have the potential for radical political and cultural

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change. Examples include European universities an d the revolutionary movem ents of the 1 840s and 1 960s, Am erican ca mpuses and the civi l rig hts a n d anti-Vietnam War campaigns o f t h e 1 9 60s a n d 1 9 70s . Final ly, the academy played a key role in the Cultural Revol ution in the People's Republic of China in the 1 980s, culminating in the massacre at Tianan­ men Square on 4 June 1 989. Tnese e xamples notwithstanding, the fact remai ns that by and large the academ y has been a reactionary, rather than a radical , political force for most of its history. However, as we have moved into the twenty-first century, it ha s been a rgued that we are s eeing far-reaching changes not j ust in the rol e and organization of the university, but in the nature of knowledge prod uction itself:

W h at is occu rring today in our post-industr ial soc iety is a c r isi s not only in the structure of a u tho r i t y and in the cogni tive structures of society as was the case a few d e c a de s ago but in the very constitution of kn o wl edge as a result of the extension of dem ocracy into knowledge itself. ( D e l a nt y 200 1 : 2)

As several con tri b u tors to th is vol ume have made clear, a central driving force i n the development of disabi lity studies has been the insistence by disa bled people that thei r experiences be properly i ncorporated . Thi s may b e i n terpreted as an extension o f democracy i nto the academic production of knowledge a bout disa b i lity. Accordingly, 'The university in the age of mass education has been a m a j or s ite fo r the a rticulation of d e mocratic a n d progressive va lues, for instance of ra cial equality, human rights, fem i nism and socia l democracy' (Delanty 200 1 : 9 ) . Indeed, i n the late twentieth century new social movements emerged , notably with refe rence to women, people from m i nority ethnic groups, gay men and lesbians and, l atterly, d isabled people, and their inte l l ectual heart has often beaten, and continues to beat, within academic i nstitutions. Furthe rm ore, many of those i nvolved in the production of what at the ti me seemed new and radical ide a s worke d in uni vers ities and col leges. A s w e have seen throughout this book, this has certainly been the case with disab i l ity studies, where there has been a fusion between the every­ d ay struggles of disa bled people and th e sch olarly work produced by disa bled a n d non-disa bled academics. The outcom e of this sym biotic rel ationsh i p has been twofold . Fi rst, disabi l i ty stud ies has developed as an acad emic d i sc i p l i ne in its own right, base d upon the d irect experience o f d isa blemen t . Sewnd, the l inks between disa bled people and d i sabi lity studies have hccn mainta i ned. However, the prec ise natu re of these l i nks is becoming inc reasingly problem a t ic, a s hoth the move m e nt grows in st rength and d i sability

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studies becomes more pop ular as a legi tim a t e field of inqu i ry. Aga in,

Del anty makes this point i n re sp e ct of kn ow l e dge pr odu ct io n ge n e ra lly : 'With . . . . the com ing of new poli tics, the university has become a major

site of b a t t l e s of cultural id en t it y, confrontations which have had major

r epe rcu s s i o n s for the very meaning of discipl ine-based k no wledge as well as h i sto rica l l y informed canon' (Delanty 200 1 : 4). Such c on fl ict s have seen d i sa bil i ty studies cha l lenge the tr adit io n a l disciplines of m edici n e , sociology and psychology with r ega r d to the l egi t imac y of th e knowledge they have produced about disa bility. Not only that, but the relationship between the d i s ab i lity movement, as the p r odu ce r and tra n sfo rm e r of a cohesive unde rst a ndi ng of the col lective experience of di sab il ity, and the academy, as the produc e r and a r bit e r of all forms of kn owl ed ge about impairment and disa bi l ity, has a lso come un de r scrutiny. It is to this r e lat i o n sh i p that we now t u r n .

The disability movement and the academy In conceptualizing the re la ti onsh i p between the acade m y and the disa bil­ ity movement, it is pos s ibl e to identi fy t h re e d i ffe re n t ap pr o a ch es. The first, which we will call the 'inside-out' approach, derives from the women's movement, and i s based upon the argument that the per­ sonal is pol it ica l (Morris 1 99 1 ) . It argues that direct expe rie n ce of a p h eno me n on is e ssent ial not only for faci l itating an understanding of it, but also fo r de v e lopi ng an appropriate po li t ic a l response. In some of the more extreme ve rs ion s it is s ugge ste d that on ly those w i t h direct experience a re e n t itled to speak about it: only women can speak about wome n' s experiences; only black p eop le can speak about the black experience; on l y d isa bled p eo pl e a bo ut t he dis abi l ity e xperience, and so on . Thus, we see within the British disabled people's movem ent that some groups are c o mp ris ed solely of disabled pe op le , both as individual members and as salaried em ploy ees . Others take slightly di fferen t pos­

itions in r e spe ct of non - di sa bl e d allies, as they have come to be called. Some will not admit non-disabled p e o p l e as members, but will employ them as staff, and other groups will admit non -di sa bl ed pe o p le to all areas

of the organization, as l o n g a s disabled people remain i n control (Morgan et al. 200 1 a) . In sum, th e re is no one u n ive rsa l position on h o w the relationship between e xp e ri e nce and the movement shoul d be con­ structed. The sa m e is true of th e way in which d isab i l i t y studies i s taught and researched wi t h i n the university. The r el a tionsh i p be t we en expe r ie n c e and s c hola rsh ip is constructed d iffer e n tl y between different universities

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and the indi viduals and groups concerned ( Pfeiffer and Yoshida 1 995; Gordon a nd Rosenblum 200 1 ; Al brech t e t al. 200 1 ) . There a re a number o f problems with the inside-out standpoint. To begi n w i th, it can take a position of exclusivity that can result in the ma rginal ization of the group concerned . Most groups recognize this, and while they may have a separatist element or wing, they none the less attempt to build relationships with the rest of the world. Additionally, as noted a bove, the inside-out a p proac h ultimately reduces experience en­ tirely to the i ndividual level, rendering the prospect of producing mean­ ingfu l a n a lyses based on collective insights almost impossible. Finally, positi ons based exclusively on direct experience can often come across as special pleading - leading to the kind of experience-based work which has been characterized as the 'true confessions brigade' : that of ' [t] hose intent on writing a bout themsel ves rather than engaging in serious pol it­ ica l ana l ysis of a society tha t is inherently d i sabling' i Ba rnes 1 99 8 : 1 4 6 ) . Our second approach is t h e 'outside-in' position. Th is emerged from some groups of disa bled people themselves, partl y because of the way in which d i rect expe rience has sometimes been over-privileged, and even over-sent i mentalized. It has recently been trenchantly restated by Vie Fi nkelstei n : The pol i t ic a l and cultu ral v is i o n inspired b y the new focus on disma ntl ing the rea l disa b l ing barriers 'our there ' has been prog re ssive l y eroded and turned i n wa rd into contemplative and abstract concerns a bout the subject­ ive experiences of the disabling world. ( Finkelstein 1 9 96: 34 ) This outsi de-in stance does not deny the importance of di rect e xperience, but suggests that, by itsel f, i t is not enough . In this context Finkelstein argues that while the direct experience of disabling barriers ( i nside ) is importa n t , it has to be wedded to a political a nalysis ( outside ) of why these harriers exist and how to eradicate them. This is precisely why the relations h i p between the academy and the disabi l ity movement is so importa n t ; whilst the movement can provide direct experience, the acad­ emy can p rov ide a coherent, scholarly pol itical anal ysis. Therefore, what is at sta k e is not whether such a relationship should be constituted, but how it should be constituted and maintained . Aga i n t here a rc some difficulties with this approach . Carol Thomas 1 999), ( for exa m p l e , has recently argued that this perspective fails to take accoun t of the ac h ievements of grou ps l i k e the women's movement, which h a s rooted the hulk of its acti vities in 'the personal is pol itica l ' standpo i n t . Further, she suggests that i t is structu red upon a n erroneous separa t i o n of the p r i v a te and public spheres that is no longe r tenable i n

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the postmodern world of the twenty-first century. Finally, she suggests that the solution to this problem is to write oneself into the picture - that is, to be explicit a bout the relationship between subjective experience ( inside) and objective action in the wider world ( outside). The third approach is that of 'outside-out' , and is the one favoured by most accredited e xperts of all kinds, including academics. It has its origins in the nineteenth century and the development of positivism as a world-view. Central to this is the assertion that the social world can be properly understood only through the a pplication of the principles of rational thought and the natural sciences ( Giddens 200 1 ), and not by bui lding upon personal experience as the two previous positions dis­ cussed would suggest. The outside-out position is the one that has sustained the academy throughout its existence. As a consequence, most universities a nd colleges have constructed themselves as orga niza­ tions devoted a l most excl usively to the pursuit of objective k nowledge . However, in recent years this approach has inc reasingl y come under attack. In response, many academic i nstitutions and subject disciplines a re now trying to i ncorporate direct experience into their work (Truman et al. 2000 ). Nevertheless, in many respects these attempts sti l l seek to j ustify and sustain the position of the academy a s ultimate arbiter of what counts as meani ngful knowledge; trying to both have your cake and eat it, so to speak. A classic example is the recent work of Ma rti n Ham mersley ( 1 995, 2000 ), who, while providing a detai led appraisal of research based upon the other two positions, suggests that, ultimately, it is the role of the academic researcher to produce knowledge through the oper­ ationalization of objective research procedures. A further example is Alan Dyson, who calls himself a professional intellectual, rather than a positivist. He has recently argued that the academy has a role to play as ' instigator and sustainer of rational debate ' between the insider a nd outsider positions (Dyson 1999). This outside-out perspective also gives rise to a numbe r o f difficulties: not least that this i s precisely the position the academy has adopted for most of its history. This, as we have already suggested, is one of reaction and conservatism. In seeki ng, at this juncture, to take direct experience seriously, we would suggest that many academics and researchers are in serious danger of doing what they have a lways done - that is, colonize and reproduce in a less radical form the work, ideas and experience of others. For this reason we suggest that attempts to build meaningful working and fruitful relationshi ps between the academy and disabled people a nd their organizations based on the outside-out position should be treated with the utmost c a ution.

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Disability studies and the inclusive society Based on the a bove analys i s, it is p ossibl e to suggest that the orthod oxy of the o utside - ou t position is no longer s ustainable. The re a re several reasons for this. To begi n with, in the postmodern world, knowledge is becom i n g much more diffused thro u ghout society, and the u ni versity is no l on g e r the o n l y, o r even the most importa nt, p ro du c er of what counts as u se ful or meaningful k now l e dge ( Castells 1 996 ) . Addi tionally, the conventional symbiosis between the state and the acade my is bre akin g down . This is espe c i a l l y evident with the i n s i d io u s e nc roa c h men t of m a rket forces into a cad e m i c life. Lastly, with the r i s e of ne w soc i al movements we have seen a g radual cha lle n ge to t he right of the acad e my to deci d e w hat counts for k now le dge. All this means that 'the central task of the univ ersity in the twenty first cen t u ry is to become the key a c to r in th e pu b l ic sphere and the re b y enhance the democratization o f k now­ ledge' ( De l a n ty 200 1 : 9 ) . Fu rt h e rm ore, 'In o rga nized mo der nity the uni versity w as i mport a n t in shaping s oc i a l citizenship; today it has the add itio nal task of cu ltivating technological and cultural forms of c i tizen­ ship' ( D elanty 200 1 : 1 0) . In l igh t of the above, i t m a y be a rgued from a disability rights per s pec­ tive th at, si nce the u n i ve rs i t y ha s fai led to shape social citizenship, we cannot be confident t hat it will p erform a d equ atel y the extra task of nurtu ring tech n o log i ca l and cultu ral c i t iz e nshi p. Howeve r, w e d o not a ccep t this rather p e ssi m i s t ic view. As the contributors to this book have shown, our k now l e d ge and u n derst an d ing of t he complexity of the experi­ ence of d i s a bili ty has been g reatl y enhanced by the symbi otic rel a ti o ns h i p between disa bled pe ople and the ac a d emy, whether that rel ationship has been constructed from an outside-in or an inside-out position. Equa l ly, we remain o p t i m i st ic that this re l a tionshi p will flourish and grow under the cha n gi n g conditions of postmodernity, es pec i a l l y given the relatively firm base u pon which it now rests. As a con seq u e nce, we would expect th e body o f k nowledge c oncer n i n g the nature o f disability to c on t i n u e to g row and, in t u rn , help fac i l i tate the further i nc lu sion of disa bled peopl e i n t o the mainstream of society. It goes without saying, of course , that the disability mov eme nt needs to grow in s t re ngt h too .

The academy and postmodernity There is l i tt l e d o u bt that if the l i n k s between the academy and t he disa bled com m u n i ty a re to con t i n u e to be m utually beneficial, th e n

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Mike Oliver and Le11

Barton

academ ics and resea rchers must be acti vely involved with disabled people and their organizations on a contin uous basis. But the intensifying marketization of academic life means that establishing and mainta ining protracted involvemem with grass-roots o rganizations is increasingly di fficult. Indeed, the increasing impact of economic rationality within the academy is a major cause for concern. Since the mid- 1 990s there has been a growing emphasis on issues of economic viability, fiscal relevance and competition that have their roots in business interests and thinking. There is little doubt that this has contri buted to a n increasing emphasis on assessment-led learning and the vocationalizing of scholarship . Forms of managerialism are also developing that have little interest in critical theory or political analysis. In a recent d iscussion of the impact of globalization and market priorities on academ ic activities, Simon (2001) maintains that such forces have brought into question the very nature of what constitutes critical thought in un iversity life. The extent to which we can still speak a bout the transformative capacity of intellectual endeavour is one that needs to be urgently and seriously addressed. This has pa rticular significance in relation to disability studies in terms of the dangers of becoming i ncorporated into these burgeoning insti­ tutional processes and demands. We have already seen the deradicaliza­ tion of m uch that now passes for sociology, and even the transformative potential of specific disciplines such as feminism and black studies is now being called into question ( hooks 19 84; Sheldon 1 9 99). Accordingly, disabil ity studies needs to be wary of incorporation, as it has already attracted its fair share of criticism from disability activists in the USA ( Limon 1 998) and in the UK (GMCDP 2000�. The combination of heightened teaching, research and administrative responsibil ities within most universities and col leges means that, all too often, academics a nd researchers have l ittle time to be actively involved in 'non-academic' activities such as attending local group meetings on a regular basis, for example. Furthermore , historical l y, academics generally have been seen as part of the problem rather tha n the solution within the disabled people's movement. Consequently, many organizations have neither the inclination nor the resources to pay for academic involve­ ment. The situation is exacerbated further by the growing sense of ' research fatigue' amongst disabled people and their organizations, as a direct result of the increased a ttention paid to them by academics and researchers over recent years ( Morgan et al. 200 1 b) . None the less, i n our view, universities a n d colleges a re likely to remain the seed-beds for tomorrow's pol iticians and policy makers. Therefore it is i mportant that disabled people's perspectives be properly repre­ sented within the academy - notwithstanding that the more m a instream

Disability and the A cademy

257

d isa b i l i ty st ud ies becomes, the more attention it i s likely t o attract from scholars of the ' ou tsid e - o u t ' persuasion, many of whom, for a v ar i ety of reasons, see thei r primary role as problematizing what n e e d not necessar­ ily be problematic. Hence, exponents of d i s a b i l i ty studies are inevitably d r awn into seemingly ever more co mple x and tedious debate s that b ec o m e i n m a ny ways almost unrecognizable to those without any kind of form al ac a d e m ic training. This i s a p ro bl e m for many disabled p eo pl e , as they have o n l y a limited access to education, and higher education i n particula r ( Hu rst 1 99 8 ) . As w e have already arg u ed, it i s esse n t ia l that the rel a tionship between the disa b i lity movement and the academy con­ tinue to develop i f w e are to e n sure that the disability studies agenda will reflect the i ssu es and concern s of disabled peop le and their o rga n i za tion s . However, whilst all of this m a y be viewed as 'heal thy', since it he i gh te n s the level of s c h o l a rl y debate and d ia l o gu e , both inside and outside the u n i versity, it poses particular problems for th o s e of us try i ng to com m u nicate effectively with both. As di sc us se d by Geof Mercer i n c h a p te r 1 2, researchers have raised several i mportant is s ue s when trying to ba l a n ce t he demands of an ' e ma n ci p a tory ' disabil ity resea rch agenda with those of the aca d e my. Bes i d es c om p o un din g the distance between academics a n d the genera l public, these considerations can e ffe ct i ve l y neutra l i ze the political im p l i ca t ion s of a di s a b i li t y s tu d ies per s pect i ve , i n much the same way that feminism h a s been neutralized wi th in British a n d A merica n universities over the last couple of decades. It is wo r t h noting too that the status and income ge n era l l y associated with u n i versity life has the added risk of se d uc in g academics into think­ ing tha t their v iews a re more i mp ortant than they re all y a re. Here, it is u sefu l to remem ber that one de fi n itio n of the word ' acad e m i c ' i s 'of theoretica l in te re s t only, with no pra ct i c al application' . I f thi s is what disa b i l i t y studies is to bec om e , then the re is n o doubt in our m in d s that we ha v e fa i le d those who b ro ug h t us here: disabled people and t hei r organiza tions.

Personal reflections Ne ve rt h e less , the extent to w h ich we have bee n , or c an continue to be, effective in bu i l d i ng re l a t ionships be tw een d i sa bled peopl e and the acad­ emy in o u r work is q u e s tion a bl e . That work is often u ne ven in both q u a l i t y and i m pact. Nor can we cl a i m that 'emancipatory p r inc i p l e s ' are ea si l y de monstrable i n the work a l re a d y prod uced. We see the se as ideals to wa r d s w h i c h we a re , and shou l d he, a spi ring, and which a re, a nd should be, su bj ect to cha nge dur i ng the ongoing p roc e s s of engagement.

258

Colin Barnes,

Mike Oliver and Len Barton

However, the securing and maintenance of constructive d ialogue w ith disabled people, both at the individual and the collective levels, presents ongoing problems. The extent to which interactions a re founded on reciprocity, trust and respect demonstrates that much m ore needs to be done. Establishing mutually beneficial relationships w ith disabled scholars is one thing, achieving them with grass-roots disability activists or disabled people with little or no interest in disability issues and concerns is a far more onerous enterprise. Indeed, one of our greatest difficulties concerns the growing dilemma emanating from the demands and tensions of writing for both an aca­ demic and a lay audience. It involves issues of accessibility, values and purpose of writing, and also the reg u la tory influence of the academic role. Our very positions, titles and the growing demands of satisfying peer reviewers, the results of which involve status and money at an individual, departmental and university level, means that we are legit­ imators of that which we seek to critique. Within the academic commu­ nity this is a divisive process ( see, e.g., Barnes 1996; Bury 1996; Shakespeare 1 996 ) . All of which can only serve to exacerbate the fragile relationship between representatives of the academic and non-academic communities. Perhaps it is fitting that the final word on this subject comes from a disabled woman activist: Penny Germon, writing about activists and academics. She states: It would seem th at thus far the academic and research agenda and how far it is useful to a c tivi sts has been to a large degree left to ch a nce and the personal i n tegr it y of the indiv iduals concerned. Consequently ch a nne l s of communication and accountability remain ambiguous and unexplored . There is a need to d eve l o p a me anin gful structure for de bate and analysis which bri n gs together academics and activists, wh ic h reflects a wide range of perspectives and which is open and accountable to the wider movement. Inevitably this will in v ol v e us in discussions about how we fa c i li ta te debate which is encouraging and supportive whilst also providing opportunity to develop, to learn, to challenge and to disagree. This wil l mean creating different fora and using different media and engagi ng in sustained develop­ ment work. (Germon 1998: 254)

We would argue that, to achieve this formidable but desirable goal , a disability studies perspective must continue to support and develop the outside-in approach to disability scholarship and research . Failure to do so will almost certainly result in the fracturing of the tenuous link between the disabled community and the academy. It is our firm belief that this would be a tragedy for all concerned.

Disability and the A cademy

25 9

Final comment Whilst the primary focus of a tte n ti on in thi s chapte r has been on disabil­ i ty studies, the questions raised also have i mportant i m plications for the status, purpose and o u tcome s of sociological inquiry in the p o s tm o d er n world, as well as for the institutions i n which it takes p lace. It is our c o n victi o n that addressi ng such challenges is essentia l if both d i sability studies and sociological a n a l y sis are to continue to play a significant and meaningful part in the realization of an all-inclusive society in which disabled people a re able to pa rti c ipate ful l y, irrespective of the na tu re of their impairment, age, gender, ethn i ci ty, social class or sexual persuasion.

REF ERENCES A lbre ch t , G. L., See l ma n, K. D. a nd Bury, M. 200 1 : The Disability Studies Handb ook . L o n d on : Sage . Bar nes, C. 1 996: Disa bility and the myth of the i nde p e n de n t researcher. D isa b il­ ity a11d Society, 1 1 ( 1 ), 1 1 0- 1 3 . Ba rne s, C . 1 9 9 8 : The rejected body: a review. D isa b ility and Society, 1 3 , 1 45-46. B u ry, M. 1 996: Disabil ity and the myth of the independent researcher: a reply. Disability and Society 1 3 ( 1 ), 1 4 5 -6 . Cas te ll s , M. 1 996: The Jnformatio, Age: Eco n o m y, Society and Culture, v o l . 1 : The R ise of the Network Society. Maiden, MA: Blackwell Publishers Inc. D e la n t y, G . 200 1 : Cha llmging Knowledge: The University in the Knowledge Society. Buckingham: Open University Press. Dyson , A. 1 999: Professional intellectuals from powerful groups: wrong from the sta rt ? In P. C l o ug h and L. Barton ( ed s ), A rticulating with Difficulty: R esearch Voices in Inclusive Education, London: Paul Chapman Publishing, 1 - 1 5 . Finkelstei n , V. 1 996: Outside 'inside out'. Coalition, April, 30-6. Germon , P. 1 998: Act i v i s ts and academics: part of the same or a world a pa rt? I n T. Sha kespeare (ed . ) , The Disa bility Reader: Soc ia l Science Perspectives, Lond on : Ca ssell, 24 5-5 5 .

Gidden s , A . 200 I : Sociolog)•, 4th edn, Cam bridge: Polity. G MCD P 2 000: Coali t io n : Special Iss u e: Where Have all the A ctivists Gone ? Man c h ester: Greater M a n c h e s t e r Coalition of Disabled People, A ugu s t . Gordo n , B. 0 . a n d Rosenblum, K . E. 200 1 : B r i n g i n g d isability i n t o the socio­

l og i c a l fra tnl': a com pa r i son with d i s a b i l i ty, race, se x and sex u a l orientation stat uses. Disability and Society, 1 6 ( 1 ) , 5- 1 9 .

Ham m e r s l e y, M . 1 99 5 : The Politics o f Social R esearch . London: Sage. Ha m m crslc y, M. 2000 : Taking Sides in Social Resea rch . London : Routl e d ge . h oo k s, b. 1 9 H 4 : femimst Theory: From Margin to Centre, Boston: South End P re s s .

Colin Barnes, Mike 0/iver and Len Barton

260

Hurst, A. 1998: Higher Education and Disabilities: International Perspectives. Aldersh ot: Ave bu ry Press. Limon, S. 1998: Claiming Disability: Knowledge and Identity. New York: New York University Press.

Mo rgan , H., Barnes, C. and Mercer, G. 200 1a : Creating Independent Futures: An Evaluatimr of Services led by Disabled People, Stage

Two

Report. Leeds:

Dis ability Press. Mor ga n, H., B ar n es, C. and Mercer, G. 2001b: Creating Independent Fut11res: An Evaluation

of Services

led by Disabled People, Stage Three Report. Leeds:

Di s abil ity Press. Mo rris J. 1991: Pride against Prejudice. London: Women's Press. Pfeiffer, D. and Yoshida, K. 1995: Teac hi n g disability studies in Ca n a d a and the USA. Disability and Society, 10 (4), 475-500. Shakespeare, T. 1996: Rules of en ga gement: doing disability resea rch . Disability and Society, 11 (1), 115-19. She ldon, A. 1999: Per so n a l and perplexi ng: feminist disability p o l itic s eval uated. Disability and Society, special i ssu e: Theory and Experience, 14 (5), 643-58. Simon, R. 2001: The university: a p l ac e to think. In H. Giroux and K. Myrsiades (eds), Beyond the Corporate University, Oxford: Roman and Little fi el d, 45-56. Thomas, C. 1999: Female Forms. Buckingham: Open University P r e ss Truman , C., Me rtens , D. M. and Humphries, B. (eds) 2000: Research and Inequality. Lo ndo n: UCL Press. ,

.

Index

Abberley,

ADAPT ( Americans Disabled for

Abu - H a bib,

Accessible Public Transportation ) 79, 1 67-8 advocacy models 24 1 aesthetic judgements 70, 73, 1 25 age 5 3 , 8 3 , 1 56 ; see also elderly Ahmad, W. I . V. 8 0- 1 Albrecht, Gary L. : consumers 3 2 ; disability awareness 1 8; The Disability Business 3 1 ; disability studies 1 , 8, 1 9, 2 5 3; identity 30; pragmatism 9; quality of life ratings 1 76; societal perspective 3 1 ; The Sociology of Physical Disability and Rehabilitation 4 Alcock, P. 77-8 alienation 7 1 ; see also exclusion Altman, Barbara M . 1 9, 26 American Public Transit Association 1 6 7-8 American Sociological Association 26 American Sociological Review 24 Americans w ith Disabilities Act

Paul : impairment 52; ind ustrialization 1 93; Marxism 1 26-8 ; occupationa l therapists 1 29; Office of Populations, Censuses and Surveys 244; oppression 1 2, 68; psychological adj ustment 1 65; work/i nclusion 1 33 Abbott, Andrew 27 abnorma lity 6 2 a bo r t i o n 1 3 5 L. 78

academy: activism 7, 250- 1 , 2 5 8 ; disa bil ity movement 2 52-4, 25 8 ; disa bility politics 1 47-8; disa bil ity studies 5-8 , 5 3 , 250- 1 , 2 5 4 ; identity 2 5 2 ; market forces 25 6 ; new social movements 1 5 1 ; postmodern i sm 255-7

accessi b i l i t y 2 5 , 7 1 , 1 34, 222 accou nta bility 238-9 activism : academy 7, 2 5 0- 1 , 258; disa b i l ity 4, 5; disability movement 1 47; disabi lity po l itics 65-6, 1 39; disa b i l i ty stu dies 2, 256 Adam, B . 66

( 1 9 90) 1 52, 1 6 3 , 1 7 1 , 1 85;

accessibility 222; cohesion 3 0- 1 ; Hahn 1 3, 1 7 1 ; resistance to 1 3, 1 8 1 ; Zola 29 Anderson, J. 1 1 0

262

Index

oppression 65, 1 1 3; participatory research 239-40, 243; politics of disablement 93; poverty 2; rehabilitation 6 3; researchers 236, 241, 244; restructuring of employment 1 56; sickness 60; social exclusion 237; social model of disability 43 , 59, 104, 234; social policy 224-5; socia l protest 85; true confessions 253; United Nations 3; welfare 195 Barns, I. 1 05 barriers 156; a rchitecture 72, 1 75; c itizenship 63; communications 1 75; cultural 14; educational 1 3 0, 156; environmental 14, 29, 1 49, 175, 1 81- 2, 229; housing 165; lan gua ge 80; physical 63-6, 17 7 ; removal costs 169-70; social 10, 38,4� 53 , 63-6, 130,195, 22� 235, 246; Swa in 65 Barrington Moore,j. 128 Bartholomew, A. 144 Bartlett, H. 200 Barton, Len 1, 8- 9, 39, 91 Baschurch convalescent home 109 B case 214, 218, 220 Bauman, Z. 131, 145 Bach, M. 8, 233 Baxter, C. 79 Bagguley, P. 1 44 Beaulaurier, R. 168, 178 Banton, M. 80 beautyism 70 Barnartt, Sharon N. 1 9 Beck, Ulrich 132, 136 Barnes, Colin 1 ; aca demy 258; Becker, Howard S. 27, 236 a ctivism 139; ami-discrimination beggin g 194 legislation 152, 153; body/ Begum, N. 81 disability 6 5; care practices 61, 2 04; civil rights 152, 153 ; cultural Bellers, John 103 Bendelow, Gillian 45-6, 59, 66, 67 perspective 103; Disability Arts Benson,john M. 18 Movement 114; Disability Bentley, M. 99, 10 0 Discrimination Act 152; disability movement 140, 147, 1 5 0; disability Beresford, Pe ter 13, 48, 191, 194, 198, 235 organizations 152-3; disability Berger, P. 28 scholars 33; disa bility studies 19; Berthoud, R. 197-8 discrimination 155; emancipatory Bhavnani, R. 82 disability research 244-5; Bickenbach, j. E. 42, 1 68 employment 157; exclusion 142, Bignall, T. 79, 80 143; flexible production 156; biological determinism 6 1 , 62, 111 identifying as disabled 140; biomedicine 40- 1 , 51-2, 5 8- 9, 60, 176 impairment 40, 50-2, 68-9, 115; biophysical model of disability 42 inclusion 93; Independent Living Movement 64; labour market 197; bio-politics 66 Bird, L. 197 materialism 46, 49-5 0;

Anderson,R. 44 Andrews, G. 2 00 anti-capitalism protests 198 anti-discrimination discourse 156 anti-discrimination legislation 2-3, 152, 153, 154, 166, 170-2 Appleby, Y. 48 Apta 20 1 architecture 72, 17 5 Ardig6, A. 32 Armstrong, David 111 Arora, D. 2 1 9 Arrears Act (1879) 16 4 Ashbourne care provider 201 Asian families 79, 8 0-1 as similation 198 asylum seeke rs 87 Atkin, K. 80-1 attitudes 18, 168, 169 Australasia 8, 2 15 authenticity 70, 23 1 , 2 34-5 , 242 autonomy 6, 24-5 Ayanian, John Z. 32 Azmi,S. 79

Index birth con trol 62 Black people 8 1 , 8 8 ; see also race; racism Black Pe :.Jple First 92 Blaikie, N . 230 Blair, Tony 1 4 1 , 1 97, 222; see als 'J New La bour Blank , R::v Wade 1 6 7 Blaxt er, M i ldred 4, 44 Blendo n, Robe rt J. 1 8 bli nd p eople see visually impaired people Bloch, E. 1 2 8 Blo om, Samuel W. 27 Blume r, Herbe rt 27 body: a rc h itectural practice 72; capi tal 1 sm 62; deviance 63; diffe re nce 9; d i sabil ity 5 8-60, 6 5 ; disa bil ity studies 6 9 ; feminist mater i a lism 69; Foucault 49, 69; impairm ent 1 0- 1 1 , 67; integrity 2 1 5-1 6 ; labou r market 6 1 ; med i cal model 6 7-8 , 73 ;

oppre ssion 6 8; perfectio n 73 , 1 1 1 , 1 7 4; politics of 73 body fasci s m 70 B orsay, Anne 1 1 - 1 2, 1 03 , 1 05

Bourdi eu , Pierr e 73

Bourkc. J 1 1 1

Bowe, Fra n k 7, 1 65 , 1 72

Box, L. 80 Bradd ock, David

L. 3 3 Brad le y. E l i zabe th 4 1 Brad le y. H. 85, 8 9 Brads haw, .J . 1 99 Brady, S. 2 1 5, 2 1 6 Bra n fi c l d , E 1 5 1 , 1 5 5 Brec h i n , A 11ne 7 Bred berg, E. 1 26 Bridge, lord 2 1 2 Brita i n : c h a rity 1 05-6; Chronica l l y Sick and Disabled Person 's Act 2 ; DoH 1 99, 203; DSS 1 98 ; hea l t h c a re ma rket 20 1 , 202 , 2 0 �-4 ; new social movement 6 4-5 ; Poor Laws 1 04, 1 0 7, 1 6 .3-4, 220; social care market 20 I ; soc i a l model of disa b i l i ty 4-5 , .1 9-40; s e e also New La bou r

263

British Council of Organ isations o f D isabled People 237 B ro wn , C. 82 Brown, Scott C. 25 Browning, R. P. 1 8 3 Brunsdon, E . 202 BUPA ( British United Provident Association ) 202, 203-4 Burchardt, T. 1 23-4 Burke, Peter 1 04-5 Burkitt, I. 66 Burnip, S. 200 B urrow, J. W. 99 Bury, Michael 3 1 , 4 1 -5, 5 1 , 2 5 8 Butler, J udith 5 1 Butt, J. 79, 8 0 Califano, Joseph A. 1 66-7 Campbell, A. 1 76 Campbell, J . : activism 4 ; d isa bi lity arts 85; disa bil i ty movement 1 4 7-8; oppression 90; participatory research 243 ; race/disability 8 7; socia l model of d isability 39 Canada 7-8, 2 1 0, 2 1 1 - 1 2 Cangu i l helm, G . 6 3 Canterbury 20 1 -2 Cantril, H. 1 76 capitalism: body 62; disability 1 4, 46 -7, 1 27-8, 1 93; exclusion 46-7, 6 1 , 1 03; Finkelstein 6 1 , 205; global 47; hyperca pitalism 47; impairment 52, 1 2 7; O liver 47, 6 1 , 1 02; oppression 89, 1 82-3 ; post-industrial 14, 1 9 1 ; services 200; USA 32 care homes 1 9 9-200 care practices 6 1 , 1 28-9, 1 3 3-4, 204 care provision 1 99, 200- 1 , 203, 205 Carter, Ji mmy 1 6 6 Castells, Manuel 1 5 6, 255 census, USA 24 Centra l Council for the Care of Cripples 1 0 9 Chamberlain, J . 2 3 9 Chappe l l , A . L . 240 Chard, Jiri 1 8 charity: Britain 1 05-6; ca re 203; d isa bility 1 2, 1 04, 2 1 1 ;

Index

264

charity : Britain (cont.) e mp l oyment 105-6; or t hop aedic s 110; r ig ht s 65-6,

217; segregation 93 Charity Organization Society 107; The Epileptic and Crippled Child and Adult 1 06

Char!ton, James I. 30 Cheshire, Leonard 203 Chicago school 9, 19-20 ,24, 26, 27 Child Poverty Action Group 1 52 children: cripp l e d 106 ; disabled 1 5 5, 1 9 7, 243; impairment 1 10-1 1 ; s urgica l intervention 1 1 2-13 China 236,251 Cholmeley, J. A. 106 C h ron ic ally Sick and Disabled Person's Act 2 citizenship 1 21 , 1 6 9-70; barriers 63; as benchmark 12 2; c omm unit y 222; consumers 142 ; disentitlement 211 , 2 1 7-18 ; eq u ali ty 211, 2 1 7; feminist theory 1 33; globalization 2 1 8-20; labour ma rke t 1 34; living standards 221; m emb er sh ip '

'

216 - 1 8; non-rights-bearing 221, 222-3; participation 217 ; responsi bility 21 7, 22 1 ; rights 14, 1 30, 134, 21 3-1 7, 22 0-2; social 2 1 6-17,221 ,225; United Nations 220; u ni v ersal is m 1 45, 146 civil rights 54,64, 1 52,153,155, 18 1, 2 1 0 ,216-1 7 Civil Rights Act (1964) 16 5-6 Civil Rights Restoration Act 185 Civil War, American 1 6 4,1 8 4 Civilization Magazine 210 Cleburne v. Cleburne Living Center 1 72

Clinton , Bill 1 90, 197 coalition of interests 151,157-8 Co ate s Barry 190 Cockram, J. 239 Cocks, E. 239 Coleridge, P. 2, 78, 1 9 4 com m o dit y p r od u ction 5 3 commonality 30,235 communications 53 , 8 0, 1 75 ,

community 222, 240 Community Care Market

News

200,

201 -2,203 community care reforms 199 Comte, Auguste 8 con finemen t 6 0- 1 , 1 77 Connor, Bull 1 66 Conrad, P. 44 consciousness ra1smg 148-9 consumers 32 , 142

con val escent home 109 Cooter, R. 106, 109 , 1 10-11 Corben, J. 48 Corbin, J. 27 Le Corbusier 72 Corker, Mairian 1 9, 48 ,49, 51, 69,

235 ,244

Craig Handicap Assessment an d Reporting Technique 1 74 Cripples' journal 1 1 2 critical social theory 231-3

Crook, S. 92 Crow, Liz 48 , 50, 68 Crowther, A. 1 0 4 Crutch and Kindness League 106 Csordas, T. 6 8 cu ltur al c a p i tal 73 cultural co nstr u c t ion i s m 49 cultural perspective: dis a b i l ity 48,

49-50, 1 03-4; industrialization 1 04-5; materialism 98; p ow er 1 05 cultural studies 1 cumulative voting 18 3, 186-7 Cushlow, F. 1 06

Dan i el s, P. W. 200 Darwin, Charles 1 1 1 Davies, J. M. 243 Davis, L. 69 Davis, L . D . 8 deaf people 48 ,80-1, 1 05-6 ,

151,235 Dean, H. 121 Decade of Disabled Persons 3

decarceration 71 decision-making

1 8 3 -4

defor mi t y 1 08-9, 1 27 degra dati o n 128 deh umaniza tion 71

Index Delan ry, G. 25 1 , 2 52, 2 55 demo cracy, USA 32 demog raphic trends 1 3 1 -2 depri vatio n 1 08 deserv ing poor 1 70, 2 1 7- 1 8 develo ping count ries 1 94-5 devel opme nt studi es 1 devia nce 3, 4, 63, 64, 1 8 6 Devl ieger, Patrick J. 30, 1 76 Dewe y, John 20, 2 1 , 27 difference 48, 1 55; body 9; c onfine ment 60- 1 ; feminism 1 46; Fouca u lt 60- 1 ; fragmentation 90; identity 8 7-8 ; postm odernism 145 dignity 1 2 8 D iMagg io, P. 32 disa bi l ity 2-3, 4, 1 0; activism 4, 5; asyl u m seekers 8 7; biomedicine 5 8-9; body 5 8�0, 65; capitalism 1 4 , 46 -7, 1 2 7-8, 1 93; charity 1 2, 1 04 , 2 1 1 ; constructi ons 3 1 ; cultura l perspe cti ve 48 , 4 9-50, 1 03-4; economic costs 1 8 ; expe rienc e 2, 7, 1 8 , 1 5 0- 1 ; fem i n i sm 1 0, 90- 1 , 2 3 4 ; glob a l i zation 5 3 , 1 9 1 , 206 ; h istory 1 0 1 -3 , 1 1 5-1 6, 1 26; ide n t i ty 4, 3 0, 8 5 , 1 40, 1 8 2 ; impa i r ment 2 7-8 , 38, 40- 1 , 43-4, 4 8 , 65; oppression 1 2, 44-5, 5 3, 1 20 , 1 5 0 , 1 5 1 ; posi tive exper ience 1 8 0, 1 82; poverty 2, 4, 1 0 8 ; pre - i n dustrial ization 1 02, 1 6 3-4; priv a t i zati on 1 9 5 , 2 1 8-1 9; race 86-7; segrega tion 1 04; sex u a lity 4 8 , 82, 8 7; social con structi on 5 , 3 1 -2 , 1 5 5, 1 94 ; as soc i a l d i vision 77; socia l pol icy 1 6 3 -72 ; sociology 1 -2, 5-6; sta t i stic s 2, 1 40; su bjectivity 2 8 ; see also ba rriers; medica l model; soci a l model Dis a bi l i t y Adjusted Life Years

1 79-8 1 , 1 86 Disability and Society 8 disab i l i ty a rts 8 5

Disab i l ity A rts Movement 1 1 4 , 1 5 0 D isabi l i ty Awa reness in Action 1 94 disa b i l i t y b enefits see welfare benefits

265

Disabilitv Discrimination Act

( 1 995 ) 1 2 3 , 1 39, 1 5 2, 1 5 3-4, 1 5 8 Disabilit)\ Handicap and Society 8

Disa bility Living Allowance 6 9-70 disability movement: academy 252-4, 258; activism 147; Campbe l l 1 47-8; c i v i l rights 1 52 ; exclusion 7 1 ; inclusion 3 0 , 1 57; industrialization 1 9 3; mind-set 1 47; minority-group model 1 73; new social movement 144, 1 4 8 ; Oliver 4, 1 44 , 147-8 , 1 93 ; representation 3 0, 1 40; rights 2 5 5 ; Shakespeare 67, 1 4 8; social model of disability 1 47; sociology of impairment 73 disability politics: academy 1 47-8; activism 6 5-6, 1 3 9 ; medical intervention 1 49; new social movement 1 43-4; postmodernism 14�; social model of disa b i lity 73, 1 4 9 -50 Disability Rights Commission 1 3 9 , 1 40, 1 5 4

Disability Rights Education and Defense Fund 1 67 disabil ity studies 1 , 3-5 , 1 9-20, 2 5 1 -2; academy 5-8, 5 3 , 250- 1 , 254; activism 2; Al brecht 1 , 8, 1 9 , 253; body 69; femini sts 48; Finkelstein 5 , 6, 7, 8 ; French 7, 1 9 ; historical material ism 67; history 1 0, 1 1 -1 2, 33, 9 8-9; impairment 59, 66; materialist perspectives 46-8; neo-pragmatism 26; Ol iver 1 ; Open University 6-7, 8 ; post-Cartesianism 66-8; pragmatism 9, 1 9-2 1 , 22, 26; social barriers 3 8 ; social model of disabili ty 59; social policy 8 ; sociology 25; sociology of impairment 73

Disability Studies Quarterly 2 8-9

7,

d i sa bility theory: Ba rton 9 1 ; nation states 236; Oliver 8-9; partici patory research 2 3 9-40; social cha nges I 1 ; soc i a l di visions 8 9-92

266

Index

disabled living allowance 134 disabled people: categorizat ion 206; disemployment 193-4; employment 123-4, 142, 205-6; gender differences 78, 83; organizations for/of 152-3; as political constituency 140-1; positive images 123-4; testimonies 1 14-15; unemployment 82, 124, 130-1, 132, 165 Disabled People's International 78, 194 Disabled People's Movement 12, 90 Disabled Rights Taskforce, From Exclusion to Inclusion 1 54 disablement 42, 134-5, 136 The Disablement Income Group 4

Disabling Barriers - Enabling Environments (Swain, Finkelstein,

French and Oliver) 7 disablism: bodily pe rfection 7 3; Hughes 1 1 , 59; impairment 48, 111-12; modernity 71; racism 79-80; research 229; social model 49 disadvantage 77-8, 114 discipline 105 discourse 122-3, 156 discrimination 79, 80-1, 82; age 156; disadvantage 77-8; employment 83, 1 23, 185; impairment 70-1; learning difficulties 156; Oliver 68; oppression 78; prejudice 169; RNIB 123; services 79-80, 155; simultaneous 79; stigmatiza tion 125; UPIAS 64; welfare 154-5; see also Disability Discrimination Act disease 1 08; see also illness disemployment 193-4 disempowerment 128 -9 disentitlement 211, 217-18 disrespect 128 diversity: coalition of interests 151; commonality 235; experience 53, 90; identity 90; postmodernism 145; rights 146-7; universalism 28, 78, 146-7

DoH 199, 203 dominance 84, 232 Downer, J. 88 Downer, Jackie 92 Dowse, L. 8 Doyal, L. 127, 128, 149 Drache, D. 219 Drake, R. F. 1, 151, 154 Dreyfus Affair 125 Driedger, D. 64 DSS 198 dualism 49 DuBois, W. E. B. 26 Dunham, H. Warren 24 Durkheim, E mile 121, 124-5 Dwyer, P. 122 dys-appearance 71 Dyson, Alan 254 Economic and Social Council 224 economic factors 18, 222; experience of disability 82; history 100-1; inclusion 184; rationality 103; state 219 economics: globalization 13-14, 225; libera lization 219-20 Economist 203 ECOSOC 224 education: barriers 130, 156; free 106; inclusion 197; labour market 196, 197; segregation 92-3 Education Committee 107 Edwards, P. 199 Elberfield system, Germany 106 elderly 140, 199; see also age electoral systems 140, 143, 1 8 3 Elvy, Bill 112-13 emancipatory disability research 14-15, 228, 237; interpretivism 232-3; Mercer 257; methodology 242-5; Oliver 228, 230, 237, 238, 245; partisanship 236-8; pluralism 233-4; political change 237-8; poststructuralism 23 4-5; praxis­ oriented research 233; researchers 233-4; social and material relations 238-42; social model 2 33 , 234-6

Index emancipatory movements 9 1 embodiment 28 , 4 5-6 , 6 6 , 6 8, 70; see also body employers' responsi bility 1 84 employment: Barnes 1 5 7; charity 1 05-6; disa bled people 1 23-4, 1 42, 205-6; discri mination 8 3 , 1 2 3 , 1 8 5 ; exclusion 1 22-3, 1 26; impairment 4 7-8; New La bour 1 5 6; pre-industrialization 1 26; restructuring 1 56; see also labour ma rket; work empowerment 1 8 1-2, 1 8 3-4 , 1 86-7 Engels, Friedrich 5, 62, 8 9 , 1 26-7 environm ent 1 4, 29, 1 49, 1 75, 1 8 1 -2, 229; see also barriers epidem iology, social 24

The Epileptic and Crippled Child and Adult, Charity Organization Societ y 1 06 epistemolog)' 2 1 , 2 3 0 , 24 5 equa l i ty 1 6 8-9, 1 9 7, 2 1 1 , 2 1 7, 2 20 Erlanger, H. S. 1 64 Esping-Andersen, G. 1 48, 1 96 , 2 1 8 ethnicity 86; see also race

eugenics: birth control 62; bodily perfection 73, 1 1 1 ; DALYs 1 80, 1 8 6 ; service provision 9 3 ; ste r i l ization, compu lsory 2 1 6; lJSA 6 1 -2 Europe a n Comm i ssion 1 2 1 , 1 23 Eu rope a n Union 32, 1 2 1 , 1 54-5 Europe a n Year of Disabled Ci ti zens 1 2 1 EuroQOL Group 1 75 euthanasia 1 3 5 , 1 80, 1 86 Eva ns, E . j. 1 04 Evans, G. 32

Eve c a s e

2 1 1 , 2 1 2, 2 1 4

evolu ti onary a pproach I 00, 1 1 1 Exce l e r 20 1

except i o n a l i sm 3 3

exclus i o n : ca pital ism 46-7, 6 1 , 1 03 ; costs o f 1 42; disabi l ity movement 7 1 ; economic 222; electorate 143; employment 1 22-3, 1 26 ; i n tel lect ual 1 0 1 ; labour market 1 0 3 ; oppression 84, 1 97;

267

production 1 0 1-2; w heelchair user 70-1 ; see also barriers; soci a l exclusion experience: d isa bility 2, 7, 18, 1 50- 1 ; diversity 5 3, 90; fragmentation 9 1 ; illness 44; impairment 9 , 50; labelling 25; positive 1 8 0, 1 82; postmodernism 1 0; scholarship 252-3, 254; subjective 235 experiential studies 245 externalization 28 factory accidents 1 0 6 Fagan, T. 1 44, 148 Fairclough, N . 1 4 1 falsification principle (Popper) 20-1 fa mily responsibility 1 1 1 Faris, Robert E. L. 24 Fawcett, B. 90- 1 , 1 3 3 Featherstone, M . 70 Federal Medicaid 1 8 1 feet, de formed 1 08-9 fem i nism : citizenship 1 33 ; difference 1 46; disability 1 0, 90-1 , 234; disabilit}' studies 48; identities 86; inclusive society 1 2 ; materialist 69, 90- 1 ; oppression 1 3 3-4; partisanship 232; postmodernism 90- 1 ; racism 92; research 234, 243 , 244-5; sex/gender 66; social model of disabi l ity 50; transformational politics 23 6-7 Feuer, L. S. 5 Fido, R. 1 1 5 Field, D . 44 Field, N . H. 1 1 2 F inkelstein, Vie: capitalism 6 1 , 205 ; disa b i lity arts 8 5; disability studies 5, 6, 7, 8; emancipatory movements 9 1 ; historical materialism 8 9; histories of disabi lity 1 0 1 -2 ; industria l ization 1 02, 1 9 3 ; material ism 46; outside-in a pproach 253-4; partisanshi p 2 3 6 ; people w i th impairment 40; researchers 237, 242 ; soc ial ba rriers 235; social change 94; social model of

268

Index

Finkelstein, Vie: capitalism (cont.) disability 59, 102, 150; South Africa 90 Fleischer, Doris Z. 33 flexibility: labour market 195, 196; production 15 6 foreign direct investment 191, 1 95,

2 00

Forrester, V. 1 31 Foster, J. 1 06-7 Foucault, Michel 4; body 4 9 6 9; difference 60-1; discipline 1 05; knowledge 5 1 , 108; oppression 1 29; power 51 , 1 05, 1 0 8 , 129; racisms of state 6 1 ; surveillance 232 Fougeyrollas, P. 175 fragmentation 90, 91, 92, 145 Franklin, Ar eth a 128 Freeden, M. 1 1 1 Freedman, S. 154 freedom of movement 165 Freire, Paulo 231 French, Sally: disa b i lity arts 85; disability studies 7, 19; identity 150; i m pairm e n t 50, 51, 69; physiotherapists 83; simultaneous discrimination 79, 83; social model 49 Fujiura, Glenn T. 25, 26 ,

The Fundamental

Disability

64

Principles of

gender 48, 53, 66, 7 7 , 8 2 83 gender differences 78, 83, 130--1 General Institution for the Relief of Persons labouring under Bodily Deformity 1 06, 108-9 genetic medicine 53, 73, 135 Germany 6 1 , 106 Germon, Penny 2 5 8 ,

gerrymandering

186-7

ghetto violence 176 Giddens, Anthony 99, 1 1 3-1 4 , 141 , 144, 148,254 Gillam, K. L 183

Gillespie-Sells, K.

82,

87

Girdlestone, G. R. 110, 1 1 1 112 Glaser, B. 27 Glassner, B. 70 ,

Gleeson, Brendan I, 33, 47, 102-3,

126

Global Burden of Disease Project 26 globalization: citizenship 2 1 8-20; disability 53, 191, 206; economics 13-14, 225; hyperglobalizers 1 9 1 -2, 1 9 8; inclusion 190; nation states 1 92, 198; political economy 190; p ove rty 190; sceptics 192; science 225; social care 199-206; social constructions 194; social rights 222-6; social sciences 190; transformationalists 192-3; welfare state 1 3, 14, 191, 196 GMCDP 256

Goffman, Erving 3, 11, 27, 30, 60, 64 Goldman Sachs 201-2 Goading, C. 152, 153, 154 Goodley, D. 92, 241 Gordon, Beth 0. 7, 31, 253 Gordon, P. 1 13 governments see state Gramsci, Antonio 5, 8, 2 32 Gray, R. 106 Greenhouse, Linda 19 Griffith, B. 202 Groce, N. 180 Guba, E. G. 230, 23 1 , 232,242 Guild of the Brave Poor Things 106 Guinier, L 1 8 3 Gwynne, G. V . 229, 244 Haack, Susan 20, 21 Haber, l. 125

Habermas, J. 144, 23 3 Hahn, Harlan: Americans with Disabilities Act 13, 171; attitudes 168, 1 69; 'cure' for dis a bl ed people 1 6 8 , 1 7 8; DALYs 180; disability movement 29; levelling the playing field approach 18 2; minority-group model of disability 171-2; 'otherwise qualified' individuals 172; paternalism 170-1; unemployment 16 5 Hailsham, Lord 211 Hall, S . 85, 141, 1 42 Hammersley, Martin 23 0, 254

Index Ha mmond , B. 1 00 Hammond, j. L. 1 00 Ha ncock, P. 66 hand!c a p 4 1 -2, 42, 44, 1 75, 1 76

Handicap in a Social World ( Brechin and Liddiard ) 7 Hannington, Wal 1 2 7

Hard ing, S. 242

Harkm, Tom 1 70- 1 Harlow, C. 1 5 2

Harlow Wood O rthopaedic Hospital 1 1 0 Harri ngton , C . 1 99 Harris, j. 1 1 1 Harri s, L . 1 73 , 1 74 5 Harr ison, M. L. 1 22 Harvar d Univ ersity 26 H a s l e r, F. 5 Haug , S. 1 73 Hayw ard , Mar k D. 32 health 1 7 6, 1 78 He a l t h , E ducation and We lfa re Depa rtmc m 1 66 h ealth ca re: multin ational s 201 , 203-4; r a t io n i ng 1 8 0, 1 86; U S wmpa nies 20 1 -2 hea lth i n s u ra nce 25 Health R elated Qua li ty of Life 1 75, 1 76 , 1 78 Hege l , G . W. F. 1 28 hege mon y 7 1 -2, 232 Held, D . 1 9 1 , 1 92-3, 1 96 Herr, S . 2 1 7 Heth eri ngto n , K . 8 3 , 9 1 , 94 Higg i ns , P. C . 1 6 8 H i l l , M . 8 1 , 8 6-7 , 8 7 , 8 8 H i ii-Co l l ins, P. 8 2 Hi ndes s , B . 1 2 1 Hirsc h, M . M . 80 H i rsr, P. 1 92, 200 hist oric a l ma terial ism 6 7, 89, 1 1 5 hist ory I , 1 00- 1 ; di sa b i l i t y 1 0 1 -3, 1 1 5- 1 6 , 1 26; d i s a b i l i ty studies 1 0, 1 1 - 1 2 , 3 3 , 9 8-9; identities 1 1 3- 1 5 ; i d i ogr a ph i c metho dology 99; ped agogy 1 1 4 ; sociology 1 1 - 1 2 , 98- H) ) • tes t i monies 1 1 4- 1 5 Hoek ma n , B . 200 H og a n K H Hogge tt , P. 1 4 6 -

,

.

.

269

Holden, Chris 1 3, 48, 1 9 1 , 1 96, 1 98 homophobia 77 Honneth, A. 1 28 , 1 2 9 , 1 30 hooks. bel l 2 5 6 Hous� of Lords 2 1 1-1 3 housing 1 65 Hughes, Bill: accessibility 7 1 ; aest hetic worth 73; b iomedicine 5 1 -2; di sa b l i s m 1 1 , 5 9 ; identity 1 50; impairment 1 0- 1 1, 66, 67, 69, 70-1 ; invalidation 5 9 ; oppression 6 8 ; politica l change 65-6; resistance 1 1 4; social model 1 04; sociology of i mpairment 60 human rights 1 4, 2 1 0-1 1 , 2 1 4-1 5, 222-3 Humphrey, j. C. 1 5 1 , 1 58 , 244 Humphries, B. 233 Hum phries, S . 1 1 3 Hunt, A. G. 109 Hunt, Pau l 5 , 8 , 229, 2 3 3 H u r st , A. 2 5 7 Hurst, R. 4 3 Hurst, Rachel 7 8 Hvinden, B . 1 hyperglobalizers 1 9 1 -2, 1 9 8

ICIDH 26, 39, 4 1-4, 1 75, 1 76 ICIDH-2 39, 42-3 identities: ac a d em y 252; affirmative model 1 50; A l brech t 30; collective 8 5 , 86; commonality 30; conflicting 86; difference 87-8; disability 4, 30, 8 5 , 1 40, 1 8 2 ; diversity 90; dominance 84;

ethnicity 86; feminism 86; fragmentation 91; h i s tory 1 1 3- 1 5 ; Hughes 1 50 ; inclusion 1 1 3; mu l tip l e 8 3-4, 86, 8 8-9 ; negative

8 8 ; Oliver 85; oppression 84, 88; personal 1 50, 1 5 1 ; pol i t ic s of 85, 8 7-8; power relations 84; social constructions 1 5 1 ; socia l model of d i s a b il i ty 8 4-5 ; work 1 32 identity pol itics 64, 8 5 , 87-8, 1 50-1 IDF (International D i sa bility Foru m ) 2 idiographic methodology 99 ldun Healthcare 20 1 -2

270

Index

193; impairment 126-8; lgnatieff, Michael 223 Marxism 126-8; Oliver 1 94 illness 3, 6, 44, 51, 60, 178 inequalities 77, 232 impairment 178-9; Abberley 52; Ingstad, B. 194 Barnes 40, 50-2, 68-9, 115; inside-out approach 252-3 body 1 0-1 1 , 67; capitalism 52, Institute of Medi�.:ine report 17 5 127; children 110--11; disability 27-8, 38,40--1, 43�, 48, integration 135 integrity of body 215-16 65; disability groups 29 ; disability intellectual disabilities see learning studies 59, 66; disablism 48, difficulties 111-12; discrimination 70-1, interactionism 19-20, 125; social 28, 71; employment 47-8; 29-30; symbolic 27, 30-1 equality 220; experience 9, 50; internalization 28 Finkelstein 40; French 50, 51, 69; International Classifi cation of Hughes 10-11, 66, 67, 69, 70-1; Impairments, Disabilities and industrialization 126-8; Handicaps see ICIDH interpretivism 44, 69; International Monetary Fund 198, materialism 68-9; medical 203 intervention 174; medical International Network on Health model 40-- 1; Morris 40; Expectancy and the Disability Oliver 50-2; oppression 40, 69; Process 175 participation 125; international non-governmental phenomenological sociology 71; organizations 203 physical 106, 140, 199; International Year of Disabled pre-industrial 102-3; production People 3 causes 61, 62, 106, 127, 184; internationalization of care 200--1, sensory 70--1, 83, 105-6, 140, 241; 205 social model of disability 11, 50--2, interpretivism 44, 69, 231, 232-3, 61, 67, 156; sociology of body 242 10-11; visibility 71, 84, 151, 171-2 interviewers 243 lmrie, Rob 28, 63, 71, 72 invalidation 59, 63-6 incapacity 60--3, 225 incapacity benefit 198 Jacques, M. 1 41 inclusion 151; Barnes 93; disability James, Bobby 1 1 2 movement 30, 157; economic 184; james, William 20, 21, 22, 26 education 197; feminism 12; jenkins, K. 99, 114 globalization 190; identity 113; jenkins, R. 83 labour market 135; Oliver 93; Jensen, J. 216, 217, 225 political 184, 187; social job-shaped jobs 130 120, 135, 184 johnson, V. 166 independent living 29, 53, 167 johnstone, D. 148 Independent Living Movement 4, Jones, L 80--1 9-10, 64 jones, M. 220 independent sector see private sector Jordan, B. 197 individual 32, 130, 218 Individuals with Disabilities Education Jordanova, L. 99, 108 Joseph Rowntree Foundation 240 Act 185 Journal of Health and Social industrialization 1 94-5; Behavior 24 Abberley 193; cultural journals 1, 8, 24 perspective 104-5; disabi lity justice 225 movement 193; Finkelstein 102,

Index Katzmann, R. 1 6 7 K a u l , I. 2 1 8 Kau p in e n , Lisa 1 94 Kelly, L. 245 Kelly, M. 44 Kemm is, S. 2 3 9 Kenn y, D . 1 99 {eohane, R. 0. 1 96 i
land, H. 1 34 L a n g a n , M . 92 la:tg uag e d i ffic ulties 80 Lc.the r, P. 2 3 4 , 236 L2 ybo u rn , K . 1 06 Le Co urt Cheshire Home 229 Leagu e of H e a rts and Hands 1 06 lean in g d i fficulties : care prov i s ion 1 9 9 ; discrimination 1 56; men ta l competence 2 1 3-1 4; .lo n - v i s i bl e 1 5 1 ; :>roc rea tion r ights 2 1 4; and

271

race 79; research 240- 1 ; seg re g a tion 93; sterilization 2 1 1 , 2 1 4 Lee, Phi! 1 2, 1 44, 1 48, 1 50 Lemert, E. 64 Lenzer, G. 8 lesbian and gay c om m unity 82, 87 levelling the playing field ap proa ch 1 82 Levitas, R. 1 2 2 Lewis, j. 1 06 , 1 0 7 Liachowirz, C. H . 1 64, 1 6 8 l ibera l iza t ion , economic 2 1 9-20 Li beration Network of People with Disabilities 5 Liddiard, Penny 7 Lincoln, Y. S. 230, 23 1 , 232, 242 Linton, Simi 8, 1 9, 33 , 256 Lister, R . 1 33, 1 34 , 1 45 The Lived Body ( Wi l l i am s and Bendelow) 45-6 living conditions 229 living stan da rds 2 2 1 , 225-6 Ll e w e l l y n, A. 33 Lloyd, M. 83, 238, 239, 240, 243 local councils 1 8 3-4 London Disability Arts Fo r u m 85 long-term care p l a ces 1 99 Longmo r e, P. 1 , 4, 33 Lonsda l e, S. 83 Lorde, Audrey 8 7-8 Luckman, T. 28 l u n a t i c as y lu m s 1 04 Lunt, N. 1 30 Lupton, D. 62, 1 5 8 Lyon, D . 99 McDonald, P. 8 8 McLaren, P. 232 M cTa gga rt , T. 2 3 9 Mandela, Nelson 2 1 0 Mann, j . S. 1 00 Mann, K. 1 4 1 , 1 45 March, j. 24 1 March of Dimes 2 9 marginalization 79, 1 0 1 , 1 56 Marion case 2 1 5 market forces 256 Marks, Deborah 1 , 6 1 , 67, 7 1 , 1 1 3 , 1 14

272

Index

Marks, L. A. B. 220 Marsh, I. 86 Marshall, D. R. 183 Marshall, T. H. 216- 17, 220 Martin, G. 144 Marwick, A. 100 Marx, Ka rl 5, 8, 89, 99, 121 , 1 6 4 Marxi sm 43, 46, 89, 100-1, 104-5, 126-8 Mason , D. 89 materialism: Barnes 46, 49-50; culturalism 9 8 ; disability studies 46-8; feminism 69, 90-1; Finkelstein 46; historical 67,89, 115; impairment 6 8-9; medical model of disability 59-60; Oliver 46,49-50; social division 89 May, A. 202 Mayer, M. 144 Maynard, A. 202 Maynard, M. 234,237, 242,245 Mead, George Herbert 20, 27, 1 30 means testing 221 mechanization 6 1 , 1 04 media representation 54 medical intervention 149,173, 174, 178, 179 ; orthopaedic 109, 110; surgical 11 2-13 medical model of disability: biologica l destiny 61; body 67-8, 73; expert knowledge 1 02; impairment 40-1; materialism 59-60; Oliver 60, 149; resistance 113 medical sociology 6,7, 43-5, 51, 6 0 medicine 12, 25, 174 Meekoshe, H. 8 Mel ucci, A. 144 Mendelson, M. 221 mental competence 213-14; see also learning difficulties mental health 151, 158 ,239 mental illness 3-4, 104,156, 199 Mercer, Geof: e mancipatory disability research 257; illness 60; oppression 113; participatory research 239-40,243; social model 1 4,43; social protest 85 methodology issues 23, 9 9, 230, 242-5

Michaud, Catheri ne M. 18 Mies, Maria 232,236, 242 migrant la bour 132 Miles, R. 82 Miller, E. J. 229, 244 Mills, C. W. 231 Milner, H. V. 196 Mind 152 Mind/BBC 2000 197 minority-group model of disability 171-2, 173 Minow, M. 218 Mirza, K. 80 Mishra, R. 195,223 Mitchell, D. 1 mobi lity allowa nces 136 modernity 49, 5 8 , 63-6, 71 Modood, T. 86 Mohan, J. 201, 203-4 Monks, J. 84, 86 Moore, Michele 238, 239, 240, 241, 245 moral underclass d iscourse 122 Moran , M. 198 Morgan, H. 252,256 Morris, Jenny: community support 240; economic factors 82; feminism/disability 91, 234; multiple identities 86; people with impairment 40; personaU political 252; socia l model 48,50, 68 Mouffe, C. 1 41 Mudrick, Nancy R. 32 Mulgan, G. 1 42 Mullard, M. 1 44-5 Muller-Hill, B. 61 multinationals 47, 192, 19 5,20 1 , 203-4, 205-6 Muntford, R. 1 Muslim community 151 Nadash, Pamela 240 nation states 1 9 2 , 198, 236 National Academy of Sciences 29 National Lottery's Community Fund 240 National Medical Enterprises 201 National Society for the Prevention of Cruelty to Children 107

Index nee-l iberalis m 72, 1 92 nee- pragmatism 2 1 , 26 New L a bour: all work test 1 98 ; emp l oym ent policies 1 56; socia l exclusion 1 2 1 , 1 22, 1 4 1-2, 1 96-7; Th i rd Way 1 4 1 ; welfa re state 1 2 1 ne w social movements 1 48; aca demy 2 5 1 ; Britain 64-5 ; col le ctive iden tity 86; disa b i lity move ment 1 44, 1 47; disab i lity polit ics 143 -4 ; Ident ity pol itics 85, 87-8; Oiiver 64-5; single issues 88 _ N1c ho l son , L. 64 Ni xon , Rich ard 1 65 no mo thetic methodology 99 n on-dis a bled people 7 1 -2,

1 5 1 , 1 6 9, 2 52

l\ or d, E . 1 80 nor ma l i ty 62-3, 90, 1 78 No rma n, N. 2 1 6 Notti ngh a m and District Cripples' G u i l d 98; Annual Reports 1 06- 7; o rth opaed ic surgery 1 1 0; recrea tiona l programme 1 07; self-he l p 1 07-8; su rv e i l l ance medicine 1 1 1 n urs ing hom es 1 99 O akley, A. 245 O be rm a n n , T. E . 1 64 O jers h a l l, A. 2 5 o jecti v i ty 22-3 , 2 8, 99 0 Bri e n , M . 1 0 5 oc c upa t i ona l t herapists 1 29 O ife, Cl a ns 1 3 0, 1 36 O ffi c e of Populations, Censu ses and S urv eys 234, 244 Ohm ae, K . 1 92 Oli vcr, Lo rd 2 1 2 Oli v er, M i ke: capitalism 47, 6 1 , 1 02 ; ca re p ra ctices 204; costs o f e xc l u s i on 1 42 ; critica l theory 23 2 - 3 ; Disa b ility and Society 8 ; d i sa b i l i t y movement 4, 1 44, 147-8, 1 ?3; d i sa bi l i ty organiz ations 1 52-3; di sa b i l i ty studies 1 ; disa bility

�

theo ry 8-9 ; D isa bling

Ba rrie rs - Enablin Em,ironments g 7; d i s c ri m i n ation 6 !! ; e manci patory

273

disabil ity research 22 8 , 230, 2 3 7, 238, 245; handicap 4 1-2; historical materia lism 89; identity 85; impa irment 50-2; inclusion 93; industrialization 1 94; labour market 1 97; materialism 46, 49 5 0 ; medical model 60, 149; methodology 244; new social movement 64-5; OPCS 234, 244; oppression 65, 89, 90; participator)' research 239, 243; partisanship 236; passivity 233; people with impairment 40; personal tragedy approach 62, 1 6 8 ; The Po li ti cs of Disablement 8-9, 3 1 ; pre­ i ndustrialization 1 26; race/ disabi l i ty 86, 87; research 1 1 5 , 229; researchers 1 5, 233, 24 1 ; socia l model o f disabil i ty 3 9-40, 4 1 , 4 3 , 59, 65; social model of impairment 68; social policy 224-5 ; Social Work with D isa b led People 5; sociology of i mpa i rment 52; state welfare 1 95 ; unemployment 8 2 ; Walking into -

Darkness 236

Olson, S . M. 1 67 Omega Worldwide 202 O'Neil, j. 6 1 ontology 60, 230, 2 3 1 Oorsc hot, V. van 1 Open University 6-7, 8 oppression: Abberle y 1 2, 68; Barnes 65, 1 1 3; body 68; Campbell 90; capita lism 89, 1 82-3 ; care practices 6 1 ; cultural 50; disabil i ty 1 2, 44-5, 53, 1 20, 1 50, 1 5 1 ; disa blement 1 .34-5, 1 36 ; discrimi nation 78; exclusion 84, 1 9 7 ; feminist theory 1 33-4; Foucault 1 29; fragmentation 92; Hughes 68; i denti ty 84, 8 8 ; impairment 4 0 , 6 9 ; i nternalized 1 1 3 ; intersections 1 0, 8 1 ; Mercer 1 1 3 ; O l i ver 65, 89, 90; social 6 5 , 2 3 3 , 245; solidarity 84-5; Vernon 8 1 , 84, 93; wel fa re pol icies 1 95 Oregon 1 8 1 organ izations for/of disa bled people 1 52-3

274

Index

disability arts 85; disabled people 140-1; of disablement 93; discourse 122; emancipatory 150; outside-in approach 253 -4 , 258 identity 150-1; inclusion 184 , 187; outsider-out approach 254 mind-set 142-3; protest 2-3, 71, OXFAM 78 166; of resistance 111-13; rights 216-17; social division Papadakis, E. 202 78-9; transfor mational 236-7 Papillon, M. 216,217,225 Pollock, A. M. 1 99 Paralympics 123-4 Poor Laws 1 04, 107, 1 6 3-4, 220 parasite people 229, 233 poor relief 221 Parish, Susan L. 33 Popper, Karl R. 20-1, 22 Parker,]. 1 04, 111 Porter, M. 200-1 Parsons, Talcon 3 positivism 2 3 , 230- 2, 254 participation 259; citizenship 217; post-Cartesianism 66-8, 73 feminism 232; impairment 125; postmodernism 10; academy 255-7; incapacity 60-3; labour criticism 91-2; cultural market 1 28 , 135, 1 96-7; constructionism 49; difference 145; social 1 22- 3; validation 243 disability politics 144-6; participatory research 2 3 9-4 0 243 diversity 145; experience 10; particularism/universalism 99, 133 feminism 90-1; fragmentation 145; partisanship 2 3 1 , 232, 236-8 rationality 99; sociology 259; passivity 233 visually impaired people 70-1 Pate!, Chai 20 1 poststructuralism 49, 234-5, 242 Pateman, C. 1 46 Potts, M. 115 paternalism 166-7, 170-1, 182,204, poverty 149-50; Bauman 131; 211,214 deserving poor 1 70, 217-18; Paterson, Kevin: accessibility 71; developing countries 194; biomedicine 51-2; disablism 59; disability 2, 4, 108; identity 1 50; impairment 66, 67, globalization 1 90; 69, 70-1; oppression 68; political lifestyle 114; unemployment 101, change 65-6; social model 104; 124, 1 32, 165; wage levels 101; sociology of impairment 60 welfare benefits 124 patriarchy 50 power: culturalism 105; Payne, G. 77 discipline 105; Foucault 51, 105, Peirce, Charles Sanders 20, 22, 24 1 08, 1 2 9; identity 84; Penna, S. 105 knowledge 51, 108, 132-3; Pennhurst v. Halderman 172 representation 30; researchers 240; People First 241 social class 132 personaVpolitical 50, 234, 252, 253-4 pragmatism 9, 1 9- 21, 22, 26 personal tragedy approach 62, 150, pre-industrialization 1 02-4, 126, 168, 233,234 163-4 Pfeiffer, D. 7, 42, 43, 175, 253 prejudice 77, 169 Phillips, D. 200 Price, Janet 49, 51 Phillips, S. D. 216 The Price of Justice (RNIB) 123 physical appearance 62, 70 Priestley, M. 46, 50, 90, 149, 234, physiotherapy 83, 109 236, 240, 245 pluralism 231, 233-4 Prima Braga, C. A. 200 political economy 190 Private Patients Plan 2 02 politics: of body 73; change 65-6, private sector 170- 1 , 199, 200-1 237-8; coalition of interests 157-8; orthopaedic hospitals 109, 1 10

Out of Sight documentary

112-13

,

Index pri va tization 1 95, pri v1leges 2 1 4 Prochaska, F. 1 05

2 1 8-1 9

procreation rights 2 1 1 , 2 1 3- 1 4; see also sterilization, compulsory production: excl usion 1 0 1-2; flexi ble 1 56; impairment of workers 6 1 , 62, 1 06, 1 27, 1 84; mechanised 6 1 , 1 04; see also i n d ustria lization propo rtion al rep resentati on 1 8 3,

1 86- 7

psyc h o-em otional factors 1 0 p sychological adj ustment 1 65, 1 8 5 psych ological experimen ts 1 69 Pu b l ic Assi stance Committee 107 p u b l ic/priva te spher es 50, 253-4 P utna m , H i l a ry 20, 2 1 , 26 qual i t a t i ve/qua ntitati ve research

23-4 , 244

q ua l i t}' of l i fe cri teria 1 73-4; A l br ech t 1 76 ; CHART 1 74; Disa b i l ity Adju sted L i fe Years

1 79-80 · formul a 1 74· ' Harris u rvey 1 74-5; Hea lth Rel ated Quality of Life 1 75,

;

uti li ta ri anism 1 79, 1 80, 1 86 Q uibe l l , R. 1 1 6 Q u ine, W. V. 0. 20, 2 1

1 78;

Rah a n , C. 1 .5 0 4 8 , 5 .3 , 77, 82, 86-7 rac i a l d i sc rimin ation 79, 8 1 , 84 ra cism 6 1 , 79-8 0, 82, 92 Ra dle y, A . 44 Rae . A . 1 4 1 R a :n a z a n oglu, C. 92 ra tio n a l i t y 5 8 , 9 9 , 1 03 R a w l i n gs , R. 1 52 Rayn e r, G . 202 re a l ity/s oc i a l constru ction 2 1 , 28, 23 1 Rez su n , P. 23 1 , 23 9 RE AV E S 1 75 rec iproc i t y 1 97 Re cd ing , Otis 1 2 8 re d ist r i b u t ionist d i scou rse 1 22 re fugees 8 7 RE GA R D 87

race

2 75

rehabilitation : Barnes 63; biomedicine 40- 1 ; counsellors 1 65; medical practice 1 74; norma lization 62-3; research 24-5; veterans 1 84, 1 85 Rehabilitation Act ( 1 973 ), US: Section 504 2-3, 1 65, 1 70, 1 7 1 ,

1 72, 1 8 1 , 1 85 Rehnquist, William 1 72 Reich, R. B. 1 96 Reiser, 1 75 representation 30, 1 40, 1 83-4 research: disabl ism 229; feminist theory 234, 243, 244-5; learning difficu lties 24 1; mental health 239; methodology 242-5; Ol iver 1 1 5, 229; pa rticipatory 239-40, 243; reh a b i l i tation 24-5; social 1 1 5, 230-2; see also emanci patory disability research research fatigue 256 research su bjects 239-40, 24 1 , 244 researchers: accounta b i l i ty 23 8-9; Ba rnes 236, 24 1 , 244; emancipatory disability resea rch 2 3 3-4; Finkelstein 237, 242; with learning difficulties 240- l ; Oliver 1 5, 233, 24 1 ; parasite people 229, 233; partisanship 23 1 , 232; power 240; resea rched 239-4 0, 244; Shakespeare 236, 242, 244; Vernon 243, 244 residential care 1 99, 229 resistance: costs of change 1 56; Hughes 1 1 4; Marks 1 1 4; med icalization 1 1 3 ; non -d isabled people 1 6 9; politics of 1 1 1 - 1 3 respect 1 28-9 responsi b i lity 1 06, 1 1 1 , 1 84, 2 1 7, 22 1 Reynolds-Whyte, S. 1 94 Riddell, S. 205 Rieser, R. 1 0 Rifkin, j. 1 3 1 rights: c h a rity 65-6, 2 1 7; citizenship 14, 1 3 0, 1 34, 2 1 3 , 2 1 6- 1 7, 220-2; disabi lity movement 7, 1 67, 255; diversity 1 46-7; privi leges 2 1 4 ; reciprocity 1 97; social 222-6

276

Index

Rioux, Marcia H .: case studies 2 t 1; passivity 233; privatization 2 1 8; rights 14, 2 1 4, 2 1 7 ; social model 8, 2 1 1, 214,217, 218; social policy 224-S Robbins, B. 87 Roberts, K. 87 Robertson, lan 28 Rodgers, J. 241 Roeher, I. 217 Rorty, Richard 20, 21, 23 Rose, H. 134 Rosenblum, Karen E. 7, 3 1 , 2S3 Rosenhan, D. L. 3 Roth, W. 1 64 Rothman, D. 173 Roulstone, A. 48 Rowley v. Hudson Central Board of Education 172

Royal Association for Disability and Rehabilitation 109 Royal National Institute for the Blind 123 Royal Orthopaedic Hospital 112 Ruigrok, W. 192 Russell, R. 70 Rustin, M. 14 1 Rutkowski-Kmitta, Violet 2S, 26 Sachs, Albie 210, 21 8 Sage Inc. 24 Sample, P. L. 241, 243 Sanger, Margaret 62 Santitas 202 Sapey, B. 4 1 , 48 Sarup, M. 1 1 3, 1 14 , liS sceptics/globalization 1 92 Scheff, T homas 3 Schiller, F. C. S. 20, 21 scholarship 2S2-3, 2S4; see also academv" Scholte,j. A. 47 Schwandt, T. A. 23 1 science 22S scientific method 20- 1 , 22, 24 Scotch, R. K. 166 Scott, Robert 4 Scull, A. 104 segregation 79, 92-3, 101, 1 04 Seidman, S. 64

Self Advocacy Movement 4 self-anchoring scales 176 self-esteem 128, 129 self-help 10 6 107-8 self-presentation 29-30 self-respect 128, 1 29, 130 Sel lars, W. 20 sensory impairment 241 service sector 79-80, 155, 220, 221; provision costs 93; social care 25, ,

199-206

sex/gender 66 sexism 83 sexual equality 146 sexuality 53, 77; disability 48, 82, 87 Seymour, W. 63 Shakespeare, Tom: academy 258; body 69; disability arts 85; disability movement 67, 148; genetics 73; identities 81!; postmodernism 144; protest 85; researchers 236, 242, 244; social model of disability 49, 150 Shaw, A. 1 66, 174 Sheldon, A. 256 Sheppard 107 Shildrick, Margrit 49, 51, 69-70 Shilling, C. 59-60 Shore, C. 1 OS sickness see disease; illness silencing 232 Silver, H. 121 Simmel, Georg 27 Simon, R. 256 Skeggs, B. 235 Skocpol, Theda 26-7, 1 64 slum clearance 11 1 Smith, M. J. 230-2 Smith, T. 125 Snyder, S. 1 social action theory 22 social care: Britain 201; BUPA 202; globalization 199-206; internationalization 205; service users 205-6 social changes 1 1, 92, 94, 1 81-2 social citizenship 21 6-17, 221, 255 social class 53, 77, 82, 83, 89, 132 social construction: deviance 4; disability S, 31-2, 155, 194;

Index glo b alizati on 1 94; identit ies 1 5 1 ; me ntal illn ess 3 ; reali ty 2 1 , 2 8 , 2 3 1 ; sociolog y 3 1 ; sociology of the b ody 45 social dea th 60- 1 229 social divisions: d sa bility theory 8 9-92; disabl ed peopl e's � ove ment 1 2; inequa lities 77; Inte ra ctions 82-3; mater ia lism 89; ove rlap s 7 9; pol itics of 78- 9 so c1 al exc l usio n 1 0 1 , 1 94; Ba rnes 237 ; ba rrie rs 1 0 , 5 3; e mpl oyment 1 26· Europ ea n ' Uni on 1 2 1 ; New Labour 1 2 1 , 1 22, 1 4 1 -2, 1 96-7; a nd oppre ssion 65 , 8 4, 1 97; soc i a l i ntegrat ionist di sco urse 1 34 · work 206 soc i a l his tory 1 0, 1 0 1 soc1a l h ygiene 62 social i n clusi on s e e inclusio n soci a l i n tegra tioni st disco u rse 1 22-3, 1 34, 1 3 6 soc ia l i n ter actio n ism 28 29-30 s oci a l mo del of dis a bi l it : au then t icity 2 3 4-5 · Barn es 43 59 1 04, 2 3 4 ; Brita i n 4'-5, 39-40; ' ' B u ry 43; consc iousne ss r� isin g 1 48- 9; cult u re/ disa b i l ity 4 8 , 4 9-50 disab ; il ity move men t 1 4 7; disa l ity bi po h � 1cs 7 3 , 1 4 9-50 ; disa bility stud 1 es 5 9; disa blis m 49; e ma ncip ator y disa bi lity re se a rc h 233 2 3 4-6 · ' ' ep is te m ol ogy 24 5; fem m i sts 50; Fink elste i n 5 9 , 1 02, 1 50; H ughes 1 04; ident ity 84-5; 1 m pa 1 r rn enr 1 1 , 5 0-2, 5 , 6 1 2 , 6 7, 1 5 6 ; Me rce r 14 43 '· Mor r i s 48, 50, 6 8 ; l i v er 8-9 , 3 9 -4 0 , 4 1 , 4 3 , 5 9 , 65; Sha kes pea re 49, 1 5 0 socia l p o l icy I , 1 0 5 , 1 62-3 ; Barn cs 2 24- 5 ; disa bil ity 1 6 3-72; d1s a h i l i ty studi es 8· O l i ve r 224-5·' Rio u x 224- 5 ; s t a r 224-5 � SOC ia l p ro d u ctio n 52 ' 1 3 5 soci al p s y ch o l og y 1 soc i a l sc ie nces I 1 5 ' 1 90 '· see also soc i !>l ogy

i

0

;

O

277

soc ial security 25, 1 24, 1 64, 1 9 9 Social Sec urity Act, U S A 1 64 Social Security Administration 25 socia l su rveys 1 00 social work 1 86-7 society 3 1 , 66, 73, 99, 1 2 1 Society for Disability Studies 7 , 29 Sociological Abstracts 3 1 sociology: body 1 0- 1 1 , 45-6, 66; Ch icago school 9, 1 9-20, 24, 2 6 , 27; constructions of d isability 3 1 ; disabil ity 1 -2, 5-6, 5 3 , 1 69; disabil ity studies 25; functiona lism 1 24-5 ; history 1 1 - 1 2 , 9 8- 1 0 1 ; impairment 52, 6 0 , 73; methodol ogy 22-4, 99; phenomenologica l 7 1 ; postmodernism 259; pragma tism 22; soc ial surveys 1 00; see also medica l sociology sol idarity 84-5, 1 24, 1 25, 1 30 soma tic society 66, 73 South Africa 90, 1 8 3 , 1 8 7

Southeastern Community College v. Da11is 1 72

Spaargaren , G . 67 Spa llone, P. 73 special educational needs 1 55 , 240 Spencer, Herbert 99, 1 1 1 Spicker, P. 1 45 stakeholder groups 3 2 Stalker, Kirsten 24 1 , 24 3 The Sta ndard Rules on the Equ alization of O pportun ities for Persons with Disabil ities 3 Stanley, L. 234, 242 state: advanced capitalist soc ieties 1 92-3; and cha rity 1 04 ; citizenship 14; economic factors 2 1 9; individual 2 1 8 ; multinationals 205-6 ; rights 224; social policy 224-5 ; surve i l l a nce 69-70; see also nation states Steinberg, D. L. 73 steri lization , compu lsory 6 1 , 2 1 0, 2 1 3 , 2 1 5 , 2 1 6, 2 1 8 , 22 1 stigmatization 28, 60, 64, 1 25 Stiker, Henri-jacques 3 3

278

Index

Stone, Emma I , 2, 1 9 1 , 1 94, 233-4,

236 Stone, S. D . 73 Stopford, S . 200 Strange, S. 200 Strauss, Anselm 27 Stuart, 0. 8 1 su bjectivity 28, 4 5 6 , 235 Sullivan, M . 1 Sun Healthcare 2 0 1 -

Sunday Best - Why People Hate Prejudice against Disabilit'}'

( Radio 4 ) 1 43 surgical intervention 1 1 2-1 3 ; see also orthopaedic hospitals surveillance 69-70, 9 8 , 1 05-7, 1 08-1 1 ,

232

Sussman, M. 1 73 Sutherland, Alan 5 Swain, John: a ffirmative model 1 50; barriers 65; disabil ity arts 85; D isabling Ba"iers 7; research 240; social c h a n ge 1 1 ; socio-political dimension 1 6 8 Sweden 6 1 sym bolic interactionism 27, 30-1 Synnott, A. 62, 70, 73 Szasz, Thomas 3-4 Tabb, D . H . 1 83 tabs ( temporarily able-bodied ) 140- 1 , 158

Tamaris 20 1 Tavistock Institute 229 Taylor-Gooby, P. 1 40 , 1 43, 1 4 5 ,

146, 202 tenBroek, j acobus 1 72 Tenet Healthcare Corporation 20 1 testicular cancer 1 5 8 testimonies 1 1 4-15 Tharcherism 141 Therborn, G. 1 4 8 Third Way 1 4 1 Thomas, Carol 4 6 ; capitalism 47 ; feminist materialism 69; feminists 48; impairment 44, 50-2; materialist feminism 90-1 ; outside-in approach 253-4; public/ private spheres 50; reconceptualization of disa b i lity 1 0;

restricted acti vity 5 1 ; social model 43 ; sociology of disability 5 3 Thomas, Keith 1 0 1 Thompson, E . P. 1 0 1 , 1 28 Thompson, G. 1 92, 200 Thompson, N. 77-8 , 8 9-90 Thompson, S. 1 46 Thomson, M . 1 04 Thornton, P. 1 3 0 Tideman, M. 1 Times Literary Supplement 1 0 1 Top liss, Eda 1 04, 1 06, 1 25 , 1 26 Tosh, j. 1 1 5 Touraine, Alain 58, 232 Townsend, Pete r 4 Traill, H. D. 1 0 0 tra nsformationa l politics 236-7 transformationalists/ globalization 1 92-3 transportation 165 Trevelyan, G . M. 1 00 Tronto, J. 1 3 3-4 true confessions 253 Truman, C. 254 Tulder, R. van 1 92 Turner, B. S. 45, 66, 67, 73 Uganda 1 83 , 1 87 Umansky, Lauri 1 , 4, 3 3 Unemployed Workers Movement 1 27 unemployment 1 97; disabled people 1 3 0- 1 ; gender differences 1 30-1 ; Hahn 1 65 ; O l iver 82; poverty 1 0 1 , 1 24, 1 32, 1 65; systemic failure 1 4 9 Union o f the Physically Impaired Against Segregation 4, 5, 39, 43,

64, 229; The Fundamental Principles of Disability 64 UNISON group 1 5 1 United Nations: citizenship 220;

Decade of D isabled Persons 3 ; Declaration on the Rights of Disabled Persons 220; Declaration on the Rights of Mentally Retarded Persons 220; International Covenant of Economic, Social and Political Rights 223-4; International Covenant on Civil and

Index Political Rights 223-4; International Year of Disa bled

People 3 ; The Standard Rules on the Equalization of Opportunities for Persons with Disabilities 3; Universal Declaration on Human Rights 223; World Programme of Action Concerning Disabled Persons 3 ; World Summit on Social Development 1 94 United States of America: ADAPT 79, 1 6 7-8; Americans with Disabilities Act 1 3, 29, 30-1 , 1 52, 1 6 3 , 1 7 1 , 1 8 1 , 1 85, 222: anti-discrimination legislation 1 66, 1 72; APTA 1 6 7-8; Arrears Act ( 1 879) 1 64; capitalism 32; census 24; civil rights 64; Civil R i gh ts Act 1 65-6; Civil Rights Restoration Act 1 85 ; Civil War 1 64, 1 84; democracy 32; Department of Health and Human Services 1 8 1 ; Disability Discrimi nation Act 1 23, 1 3 9, 1 52, 1 5 3-4, 1 5 8 ; Disability Rights Ed ucation and Defense Fund 1 67; disa b i l ity s t u d ies 7-8; e ugenics 6 1 -2 ; exceptionalism 3 3 ; Health, Ed ucation and Welfare De pa rtment 1 66; Independent Living Movement 9- 1 0; indiv idu a l i sm 32; managed care 32; pragmatism 1 9- 2 0, 20- 1 ; Public Health Service 24 ; Rehabilitation Act ( 1 973 ) 2-3, 1 65, 1 70, 1 7 1 , 1 72, 1 8 1 , 1 85 ; Revol utionary army 1 64 ; Socia l Secu rity Act 1 64; survey research 9; wnrkers' compensation laws 1 64-5 , 1 84 universa lism 2 8 , 78, 99, 1 3 3, 1 45, 1 46-7 u n i ver s i t y see academy

uti litarianism 1 79, 1 80, 1 86

validation 243 Verbrugge,

loi s 1 8

\"ernon, Ayesh a : di fference 48; disc r i m i nation 79, 83; multiple

ident ities

88;

oppression 78-9, 8 1 ,

279

84, 93; researchers 243, 244; social c h a nge 1 1 veterans 1 84, 1 85 Veterans Administration 25, 29 Vincent, D. 1 08 violation of rights 223 visually impaired people 70-1 , 8 3 , 1 05-6 Vocational Rehabilitation Administration 2 9 voluntary organizations 203

wage levels 1 0 1 , 1 9 7 Walker, A. 121 Walker, C. 1 2 1 Wallcraft, ]an 2 3 5 Walmsley, ]. 88, 2 4 1 war casualties 1 09 Ward, L. 2 3 9, 24 0 , 24 1 , 243 Warmsley, J. 48 Warren, J . 99, 1 0 1 wartime, disabled workers 1 65, 1 84-5 Watson, F. I l l , 1 1 2 Watson, N. 144, 1 50 Weber, Max 27 welfare: disability studies 54; discrimination 1 54-5 ; globalization 1 3 , 1 4, 1 9 1 , 1 96 ; New labour 1 2 1 ; Oliver 1 9 5 ; paternalism 2 14 ; policies 32, 1 40, 1 8 5, 1 95 ; power relations 1 3 2-3; US studies 26 welfare benefits 1 24, 22 1 ; disabled living allowance 1 34; incapacity rule 1 98, 221 ; mobility allowances 1 3 6; social security 25, 1 24, 1 64, 1 99 Welsch, W. 73 Welsh, Carson, Anderson and Stowe 20 1 -2 Wendel l, S. 1 , 50 West, Come! 20, 26 Westergaard, J. 1 4 1 Westminster Health Care 20 1 wheelchair user 70-1 , 1 5 0 Wheen, Francis 1 4 1 White, Maurice 1 06, 1 1 2 White House Conference on Handicapped Individuals 7

280

In dex

Williams, A. 202 Williams, F. 86, 8 8-9, 9 1 , 145, 1 5 2 Wil liams, G. 6, 33, 44 Williams, Robbie 1 5 8 Williams, Simon 3 3 , 45-6 , 5 9 , 66, 67 Wilson, A. 99, 1 00 Wilson, William 26-7 Wise, S. 234, 242 women's movement 25 3-4 Wood, B. 1 9 8 Wood, Philip 4 1 Wood, Richard 85 Woodill, G . 239 work: age 1 56; care work 1 3 3-4; disabil ity 1 63-4; identity 1 32; inclusion 1 20, 1 33 , 1 35 ; migrants 1 3 2; social exclusion 206; social integrationist discourse 1 36 ; see also employment; labour market work ethic 1 03-4, 1 97 worker control 204 workers' compensation laws 1 64-5, 1 84 workhouses 1 04, 1 64

World Bank 26, 1 79-8 1 , 1 9 8 , 203 World Development Movement 1 90 World Federation of the Deaf 1 94 World Health Organization: hea lth definition 1 78 ; ICIDH 26, 41 -3, 1 75; WHOQOL 1 75 World Programme of Action Concerning D isabled Persons 3 World Summit on Social Development 1 94 World Trade O rganization 1 9 8 Wright, S. 1 05 Yelin, Edward H. 32 Yoshida, K . 7, 2 5 3 Young, D. A. 1 1 6 Young, I. 1 5 1 Zames, Frieda 33 Zarb, Gerry 140, 236, 238, 239, 240, 24 1 Zola, lrving K. 7, 1 8, 28, 3 1 Zubrow, E. 2 1 8