The Politics of Disablement: A Sociological Approach (Critical Texts in Social Work and the Welfare State)

The Politics of Disablement

Critical Texts in Social Work and the Welfare State General Editor: Pe1er Leonard

Peter LeotuJrd

Personality and Ideology: Towards a Materialist Understandinc of tbe Individual

Michoel OUver 1be Politics of Disablement

The:.::Polities' of Disa:blement:

Michael Oliver in Disability Studies University of Greenwich

Reader

pal grave macmillan

*

''' 1'1ichael Oliver 1990 All right< •es.e1 vei.l. No reproduction, copy or transmission of this public�tion rnay be made without written permission. No paragraph of this publication may be reproduced, copied or transmitted with written permission or in accordance with the provisions of the

save

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To Joy Melinda.

I'."J•

For Eleanor, William, Dan and Jef1Hila, .. ,:•r ·· without whom been finished

the bok might

never

have

c; ., I

'· '"''

'The wind, the wind is blowing Through the graves the wind is blowing Freedom soon will come Then we'll come from the shadows.' Hy

Zaret andrl\rma Marly, The

Partisan

Contents�;,,,

Acknowledgements

IX X

Introduction

1

Diability Definitions: The Politics of Mean in&

I

The im portance of definitions

2

Criticisms of official definitions A

2

way forward

The Cultural

9

Production of Impairment aad Disability

Impairment : A st ru ct ur ed account

12

14

Implicit theories of disabil i ty

19

Towards a social theory of disability

22

Disability aad the Rise of Capitalism

25

The mode of thought and historical change

29

The mode of production and historicaJ change State intervention in the lives of disabled people

4

12

Cultural considerations of disabi lity Disability: A structured account

3

4

6

The politics of meaning

I7

26 32

Explanations - back to Comte and Marx

36

Rationalisation - disability

39

as

an administrative category

The lcleolopcal Coastnaction of Disability Individualism and ideology

The individualisation an d medicalisation of di sabil ity Theories of medicaJisati on Core and peripheral ideologies VII

43 44 46

49 54

VIII

5

CONTENTS

The Structuring of Disabled Identities disability

Cuhure and

Adj u s t m ent - a psychological approach

63

a social psychological approach Social adj ustment a sociological approach

65

Stigma

-

-

6

75

The Social Construction of the Disability Problem

78

70

73

disability The ,idl;:a.of dependency An ewnomic basis for the creation of dependency A politjcal bas.is for the creation of dependency A. profes!iional basis for the creat ion of dependency The creation of the dependent individual Tbe Politics of Disablement Existin« Possibilities The restructuring of the welfare state - the elimination -

ofdepend�ncy?

political participation of disabled people The politiaJ of pressure-group activity A n a t i onal disability income The

8

68

Women�· dis.d)IJ� Black people and disability Race and gender and disabil i ty

Social policy and

7

60 61

The Politics of Disablement

-

78 83

85 88

90 92

95 95

101 103 107

New Social Movements 112

The emergence of new social movements The history of the disability movemen t A typology of disa bili ty organisations The disability movement as a new social movement New directions for the future Counter-hegemonic politics

112 113 117 118 123 130

Postscript: The Wind is Blowing Bibliograplg

134

Index

146

'' 11 )!

b- JIIJ•h.

Acknowledgam0n.ls>, ;,

Throughout the years, man y disabled �<JR��ed to the development of my thinking about disaf.i�RfiwMHUWt�gs, in conversations and som etimes in heatedf;�eftd#.;.:JiJ;IWbfHd be invi dio us to single any of them out by �«b(Aftpiilfil�tkul to ,;) '>rti )o nniJs•n:> :)rlT them all. There are some individuals whose contributions I wish to ack­ nowledge, however. My colleague Gerrt�lP�1:M"uihg interest in the project and, in particular, his·C6Wb'J�ldld"Iapter 8, which is very much a joint effort. Amanda H&wi•uRI�IITelfer also put up with me and allowed me to bo��Ji� IMflihem, often at the cost of not getting on with theirc:Jw�wdikl.•.q :.rfl For giving me both shelter and encourag�t!tl.swri�taul to Lou Opit and his colleagues John Butler, Mike Calnan , Jan Pahl and Peter Alien. Vie George and Dave Reason' alsb!ailtiWtd. toe to , •:, •·.; share my ideas with them. There is a real sense in which this bok W6uld never ·have been finished without the assistance of Linda, jil, Maurice and· George. The now defunct Manpower Services Commission provided me with a wordprocessor which made the task of writing so much easier. However, despite my coming to terms with new tech nology the final manuscript was put in order by Cathy Lewington in her usual precise and efficient way. Finally, I am grateful to the Economic and Social Research Council, not simply �cause they awarded me a personal research grant to carry out the project, but in so doing, have attempted to pl ace the issue of disability firmly on the academic agenda. ,

·

,

MICHAEL OLfVER

IX

Introduction

The isue.ef disability and the experiences of disabled people have been gi.!len scant consideration in academic circles. Both the issue and the experience have been marginalised and only in the disci­ plines

of medicine and psychology has disability been afforded an

important place.

Unfortunately

this has, itself, been counter­

productive because it has resulted in the issue of disability being sec' I! as

essentially a medical one and the experience of disability as being contingent upon a variety of psychological adjustment proces­ ses. Hence there is an urgent need for other disciplines such as sociology, anthropology, history, politics and social administration to take these matters seriously rather than to merely offer descriptive

and atheoretical accounts which leave medical and psychological approaches unchallenged.

In order to counter the medical and psychological dominance in this area,

will

ul�tely nothing less

than a 'social theory of disability'

be necessary, but such

a theory cannot be produced until the various academic disciplines begin to take both the issue of disability and the experiences ofdisabled people seriously in their own right rather than

as .marginal to both theoretical developments and

empirical work. In the introduction to

a

bok on the work of the Italian sociologist

Antonio Gramsci, Peter Hamilton claims Like many a sociologist his understanding of the underpinnings of his society

was formed through (Bocock, 1986, p. 7)

a

marginalising experience.

As a disabled sociologist, my own experience of marginalisation has been more from the sociological community than from society at large. X

XI

INTRODUCTION

A soc iol ogis t having either a perso naJ or a professional interest in

disability will not find disability occ u p ies a ce n t ral or even a marginal

place on the soc i ologica l agend a. And even where it does appear,

sociology has done little except reproduce the medical a pproac h to the faster than most

issue. In recent years medical sociology has

other areas, but even within this

medical sociologists

have been unable to d istingu is h between illness and dis a bil i t y and have proceeded

as

if they are the same thing.

A sim i lar situation is found within the sister di s ci p line of soc iaJ

an thropology. The a nthropology of health and illness

has at t r ac ted in area have not even questioned the dominanu.>Of W.eumD:tid

mu ch attention in recent years but again, anthropologists working this

etii�
frame work , let alon e begu n to provide d isa bil ity within other cul tures.

.

wifhi.,t:W,-.iolo"ir:iUl thatuirlarpljsalimwiSjfl

In emphasising my own marginaJisati�

community, I am not seek i ng to d eny significa nt experience for d isabled

people within "SOIEietlas•.BrwHU:. beginr w dtfilai•�.why. this

Indeed , a central aim of this bok is to

marginalisation of disabled people withtn soci� hll.btco')rpade much harder precis ely because pf th e

marginalisatnmiofdialitiility

within sociology, social anthropology and

dem ic disci p l i n es .

a

;vat'iftt.ydofiiOther- aca·

'

; •! ;.in

Anyone interested in the hi s to ry of disa bai"' ;will encounter

exa c tly the same

proble m.

On the experience of diSability, history is

largely silent, and when it is discussed at all, it is within the context

of the history of m ed i c al advances.

J ust as women and

black people

havr. discovered that they must write their own histories, so too with disabled people. Only then will we have an adequate framework in

which to l ocate ou r pr�ent discussions. The point of this

prea mb le is to indicate the magn itud e of the

task

involved in a t te m p t i n g to produce a sociology, anthropology or history of disability. In the context of this bok, I am certainly not attempti ng to w rite ,the sociology of d i sa bilit y because, for the reasons indicated above, thi s is an imposible task at presen t . My aim is much more limited; to begin to apply sociologi cal perspectives

b

to the issue of disa ility as the basis for u l tim ately noth ing less than a sociaJ theory of di sa bi li t y . In b eg innin g to apply these

perspec t i ves,

prod uci ng

I started with the

basic ques t i on ; why is disability individualised and medi ca li sed

wi t hi n capitalist s oci ety? This gives rise

to a number of other

Xll

INTRODUCTION

questions, the first• of which is whether d isabi li ty is individualised and m ed icalised rinLaD.-cieties. If the answer to this is no, then it raises two furthertq&ations; how did individualisation and m edical

­

isation come aboutr•within capi talism and further, what are the

mouncing>chatlenges to this individualisation and medi­ ca.lisation within this•type -Of society ? These then are the basic issues to be addresed an({, they will be done in t he following way.

chances of

The

first chaputr:·will- raise

as

a central

concern

the issue of

m eaning, It ,wiJllook at the mean ing of d isability by focusing on the

debate that has gone- on in recent years over how disability should be

purpose and function of disabled people themselves, who suggest th a t the mea ning of disabili ty is distortt.'
purposes and, ind eed

the

,

official definitions. Finally, it will consider the argume nts of

.

.

.

xili

INTRODUCli'JON

disability, rather than one in which soaety adjustslto,,U,�� angocq

requirements of the individual. It will be sugsted !thattherct,is!no

universal proces but rather that adjustment is ,an dnteractiv.e,

process

related, not just to personal biography o�r·�� but• to

structura l features as weD, notably race and'geader."'"Tl , , .

?·nw;"

C hap ter 6 will suggest that the responses of dw-blcd,pc!Qpk, to disability need to be placed within the policy conte»t·within which they occur. The in fl uence of social policy responses to-disability, Will be analysed and it wiU be argued that these responses creat� ,rather than reduce dependency. This has facilitated about criso in the welfare state and its subsequent restructuring because of the perceived economic burdens of dependency-creating policies. Partly as a res ponse to this restructuring, as well as to .a growing awarenes of the inad equaci es of service provision fOr disabled people, there has arisen what might be called the politics .of disablement. Chapter 7 will consider this from the position of traditional political activities; tha t is, through the participation of disabled people in party politics and traditional presure group activities. The final chapter will then consider the rise of the d isa bility movement as par t of the broader phenomenon of new social movements w hi ch characterise capitalism in the late twentieth century. Before proceeding with the detail of the analysis to be presented,

there are a number of disclaimers that need to be The first

made.

of language in this bok. Throughout, the term 'disabled people' is used in preference to '

disclaimer

concerns the use

people with disabilities'. It is sometimes argued, often by able­

bodied

profesionals and some disabled people, that people with preferred term, for it asserts the value of the '

disabilities' is the

person first and the disability then becomes merely an app end age

.

This l ibe ral and humanist view ft ies in the face of r ea lity as it is

experienced by disabled people themselves who argue that fa r from being an appendage, disability is an essential part of the self. In this

view it is nonsensical to talk about the person and the disability

separa tel y and conseqt,tently

disab led people are demanding accept­

ance as they are, as d isabled people. The second disclaimer concerns precisely what is meant by the

term 'disabled people

'.

Is mental handicap included, and blindness

and deafness and no n yis ible disabilities like epi lepsy ? An adequate social theory of d i s ab ility as social r es tric tion must reject the -

INTRODUCTION

XIV

ca teg o r ies based upon medical or social scientific constructions and divorced from the direct experience of disabled people . All disabled people experience disability as social restriction, whether those restrictions occur as a consequence of inaccessible built environ ­ notions of intelligence and social competence, ments, . ·f� generaJ population to use sign language, the lack reading material in braille or hostile public attitudes to people with non-visible disabil.i�ies. The third disclaimer concerns the use of the term capitalist society in prefc,·ence to industrial, modern or other such terminology. There are obviously many differences in the ways capitalism has developed, not just between the east and the west, but also within the west itself. This has produced many varieties of social policies and welfare states which have their effects on definitions and experiences of disability. However, it will be a rgu ed later that there is an underlying logic to the development of capitalism which creates disability as an individual and medical problem. U nfortun­ ately not enough e m pi ric al material exists to undertake an adequate comparative study of disability within various capitalist countries, and this bok will have to be judged on the coherence of the argument advanced rather than the evidence it marshals. If a coherent argument and framework does emerge, then it could, of course, provide the framework for a proper comparative study. One final disclaimer concerns the style of the bok and the a ud ie nce to which it is addressed. My aim has been to write a bok which will both encourage academics to take disability seriously as an analytical category, and to devel op a theoretically informed understanding of disablement in socie ty amongst disabled people. The dangers of sucli an approach are obvious : a bok which is regarded as over-simplistic by academics or a bok which is regarded as over-complex and mystifying by disabled people. All I can say is that in writing this bok, I have fulfilled a personal need to bring my own discipline of soci ology and my own experience of disability closer together; whether I have succeeded in rendering disability relevant to soci o logy and sociology intelligible to disabled people is another question. ·

•

I

Disability Definitions: the P6l�tics of Meaning · ·''

� ·· ·· ll�i·r fl"''

'

·b'o,jr!l

•1

·p(lTI'll·•

The issue of meaning has been a centred' one· m 'di�c�l:dik�'of differences between the natural and social worldS' �rld tfi�Me�tiHii of appropriate methodologies to understand t'h� 'W6rlds�·AYtat'as the social sciences themselves are concerned; tb'e det)ate aroUnaffrls issue has centred on the violation of mea ning througt\'tlae ittl�sltion of inappropriate theoretical pers pecti ves or the ignoring bftneaiihig through the collection of non-reflexive and abstriltted·dlita�"" ' Many years ago Wright Mills {1970) criticised 'the\votl:'bf'social scien tists for either bei ng grand theory or abstra"ctclt"empiHcism. The subsequent case for a methodological middle ' way has had a profound effect on social scientific work ever since anti' there have been few areas, subjects or topics where theory and empiricism have not met. One exception h owever, has ben the area of disability, to which litde attention has ben paid . There have been notable excepti ons of course, including Topliss (1979), Blaxter (1980), Leonard (1984) and Borsay (1986a) who have approached the area from functionalist, interactionist, Marxist and Weberian positions. However Wright Mills' earlier indictment of social science in general is just as valid today in the area of disability as it was all those yea rs ago . Thus, while i t cannot be claimed that there has ben much grand theo rising about disability, it can be argued that almost all studies of disability have a grand theory underpinning them. That grand theory can be char.Jcterised as ' the pe rson al tragedy theory of disab ili ty ' . It has fallen to disabled people themselves (Finkelstein, 1980; Oliver, 1983) to provide both critiques of this implicit theory and to construc t their own alternatives, which might be called 'social oppression theory'. Abstracted empiricism has proceeded from the same implicit

2

THE POLITICS OF DISABLEMENT

underpinning, firstly by seeing d isabi lity as a pro blem, and then by to meas u re the extent of these p ro b l ems that dis a b led individuals have to face. Again it has fallen to disabled people t o pr ov ide cri tiques of this (Sutherland, 1981; Olive r , 1987) an d to begin to explo re alternative methodological strategies. A major focus for these de bates has centred on the isue of definitions of disability and these, the refore h ave consequently u nderg one a n um ber of ch a nges and modifications. Starti ng from the work of Harris ( 1971) and her na ti onal survey of disabled pe ople , a threefold dist i ncti on of impair ment , disabil ity and handi­ cap was developed. Following various discussions and refinements, a more sophist i cated scheme was adv ance d by Wood { 1981) and this was accepted by the World Health Organisation as th e basis for classifying i lln ess , disease and disability. However, these definitions have not rece ived universal a cc eptance, particularly amongst disabled people and their organisations. Before proceedin g further, it is necessary to expla i n why definitions are important and to spel l o ut the precise nature of the criticisms that have been made. devi si n g me thod ologicitl s trategi es

THE IMPORTANCE OF DEFINITIONS

The social world differs from the natural world in {at least) one fundamental respect; that is, human bein gs gi ve meanings to

objects in . the social wo rld and s ubseq uen tly orientate th eir behaviou r tow ard s t hese obj ects in terms of the meanings given to them. W.l. Thomas (196) succinctly puts i t thus: 'if men define situations as real, the y are real in their consequences'. As far as disability is c.oncerned, if it is seen as a tragedy, then disabled peop le will be treated as if they are the victims of some tragic happening or circumstance. This treatment will occur not just in everyday interactions but wiiJ also be translated in to social policies which will attempt to compensate these victims for the tragedies that have befallen them. Alternatively, it logically follows that if disabi li t y is defined as social oppr essi o n, then disabled people will be seen as the collective victims of an uncaring or unknowing society rather than as individual vi c tim s of circumstance. Such a view wil be translated into social policies geared towards alleviating oppre ssion rather

DISABILITY DEFINITIONS

compensating individuals lt almost goes without saying that present, the individual and tragic view of disability dominates

than at

3

.

both social interactions and social policies.

A second reason why definitions are im portant historically on the need to identify and clasify the growing numbers of the urban por in modern industrial societies. In this proces of

centres

identification and clasification, disability has always been important category, in that it offers a legitimate social

an status to

those who can be defined as unable to work as opposed to those

clasified as unwilling to do so (Stone, 1985). Throughout the twentieth century this process has become ever more sophisticated, requiring access to expert knowledge, usually residing in the ever-burgeoning medical and paramedical professions. Hence the simple dichotomy of the n ineteen th century has give n way to a whole new range of definitions based upon clinical criteria or functional limitation. A third reason why definitions are important stems from what might be called 'the politics of minori ty groups'. From the 1950s onwards, though earlier in the case of alcoholics, there was a growin g realisation that if parti�ular social problems were to be who may be

resolved, or at least ameliorated, then nothing more or less than a fundamental redefinition of the problem was neces . Th us a

number of groups including women, black people and homo­ sexuals,

set about challenging the prevailing definitions of what attacking the sexist and racist biases

constituted these problems by

in the language used to underpin these dominant definitions. They

did this by creating, su bstitu tin g or taking over terminology to provide more positive imagery (e.g. gay is good,

black is beautif ul,

etc.). Disabled people too have realised that dominant definitions of disability pose problems for individual and

group identity and have of disablist l anguage Whether it be offensive (cripple, spastic, mongol, etc.) or merely depe rsonali sing (the handicapped, the blind, the deaf, and so on), such terminology has ben attacked, and organisations of disabled people have fostered a growin g �up consciousnes and identity. There is one final reason why this issue of de fi ni ti ons is impor­ tant. From the late fifties onwards there was an upswing in the economy and an increasing concern to p rov ide more services for begun to challenge the use

.

disabled people out of an ever-growing national cake. But clearly, no government (of whatever persuasion) was going to

commit

-

THE

4

POLITICS OF DISABLEMENT

itself to ;l wholr: range of services without some idea of what the financial co n seq ue nceS of such a commitment might be. Thus, after some pilot work, thcr Office of Popula tio n Censuses and Surve ys (OPCS) was co mm issioned in the lat e sixties to carry out a national s urve y in B ri ta in which was published in 1971 (Harris, 1971). Subs equen t work in the international con t ex t (Wood, 1981) and ·

further s urve y in this country, which has rec en t ly (Martin, Meltzer and Elliot, 198), built on and extended this work. However, this work has proceed isola ted from the direct experience of d is ability as experienced by disabled people themselves, and this has led to a number of w ide ranging and fundamental criticisms of it.

more

recently

a

ben p ub lished

-

CRITICISMS OF OFFICIAL DEFINITIONS This work attempts to operationalise a bro adly similar conceptual framework and hence criticisms of one can be appl ied to them all. Specific criticisms of the WHO sc h eme have focused on the fact that it remains close to medical classifications of disease disability --l h a ndicap In so doing it conserves the notion of im pai rm en t as abnormality in function, di sabil i ty as not being able to pe rform an -

.

normal for a human being and handicap as the This reification of the idea of normality igno res the isue of what no rmality actua ll y is, but even if the idefl of normality is conceded, the fa il ure to recognise the s itu ati onal and cultural relativity of normality is a serious ommisi on in an international scheme (Nordenfelt, quoted in OECD, 1987, p. 5). Simi l ar criticism can be made of the OPCS schemes, in that they fail to recognise the inHuences of sub-cultures, g ender or ethnicity on the idea of normality. Further, the WHO and OPCS definitions take the environment for granted even tho ugh the handicap is no longer considered to be within the i ndi vid ua l As long as the environment consists of social roles that are considered to be normal, the ina bi l ity of the i ndi vid ua l to live up to the requirements of these roles puts him or her in a disadvantaged posi tio n and thus creates a handi ca p In this way the medical approa ch is conserved since c hanges must be brought to b ea r on the individ u a l rather than the environment (Soder, q uoted in OECD, 1987, p. 5). activity considered

inability to perform a normal social role.

.

.

5

DISABILITY DEFINITIONS: ,

At this point it is, perhaps, important to clariiY>Miat is wrong medical approach to disability-aDd to.empmltl d isability . It is not being argued thatthe-medical �·to iYness or impairm ent is inappropriate, although some·..-ific·.;iidiYI{Iual medical inte rven tions may well be, but rather that.Jl�;: rn with the

•

The problem . .. is that medical people tend trl Ketidl difficulties solely from the pe rs pective of propoSed treatmenis fOr a\ 'patW:nt', without recogn ising that the individual has to weigh up-Wtlet'her this treatmen t fits i nto the overall economy of their life. In tht past especially, doctors have ben too willing to sogest mtdical treatment and hospitalisation, even when this would not neassarily improve the quali ty of life for the person concerned. Indeed, questions about the quality of life have sometimes ben portrayed as som ething of an intrusion upon the purely medical equati on . (Brisenden, 1986, p. 176)

app roac h produces defin i ti on s of disa bil ity and limited and which fail to take into account wider aspects of disability. A maj o r reason for this has been the failure of the m edi cal profession , and indeed all ot he r professions , to involve disabled people in a meaningful way except as pasive objects of intervention, treatment and rehabilitation. This has not just trapped professionals within the medical app roac h but has had oppressive consequences for disabled people. Hence this medical

which are partial

Much of the work which has already ben done on definitions has been carried out by people who do not themselves experience the d ail y problems of disability. This has di rec tly affected the solu­ tions, and in turn has often served to perpetuate discrimination against us, as well as wasting resources on an enormo us scale. (Davis, 1986a, p. 2) qf both the WHO and OPCS schemes is that, in make concrete that which is not and can never be, they present disability as a static state and violate its situational and experiential components. A further criticism

attempting to

By trying to find strict measures of d isa bili ty or focussing on

THE POLITICS OF DISABLEMENT

6

'visible' handicaps we draw d i vid ing lines and make are very b l urry and const antl y chang­ ing. By agreeing that there are twenty million disabled or 36 m illi on , or even tha t half the po pulatio n are in som e way afected by disability, we delude ourselves into thinking there is some finite, no matter how large , num�r of people . In this way, both in the d e fi n i ng and in the meas u ring, we try to make the reality of disease, disability and death proble m atic, and in this way ma ke it a t le ast potentially someone else's problem. (Zola, 1981, p. 242) 'severe'

distinctions where m att ers

Because of these fundamental flaws, Disabled People's International has opposed the WHO scheme since its i nce ption . Finkdstein, as the the n Chair of its national counterpart, the British Council of Org ani sa tion s of Disa bled People, gives the fo l owing reasoning: I remained

convinced, however, that this classification system in medical and ad m inis tra tive approaches and that in thi s respect, it is not in our best interests to

its present form reinforces towards us

sup port it. (Finkelstein, 1985)

these definitions medicalise and individualise the solutions (policies) that are applied. Thus services too are based upon an individualised and medicalised view of di sa bility and are designed by able-bodied peopl e through a process over which disabled people have had lit t le or no control. Hence , we come to politics and the oppressive consequences that s uc h definitions and the research bas ed on them, can have for d i sa bl e d people. Not only do

problems of d isabi lity but they do the s ame to the

THE POLITICS OF MEANING

It could be argu ed that in polarising the tragic and o p pressive views

a conflict is being crea ted where none necessarily exists. Disability has both ind ivid ual and social dimensions and that is wh at official definitions from Harris ( 1971) throug h to WHO (Wood, 1981) have so u gh t to recognise and to oper a tion alise . The pro bl e m with this, is that the se schemes, while acknowledging that there are social dimensions to disabi lity, do not see d is abili ty as a ri sin g from social causes. Ultimately their rationale rests upon th e of disability,

7

DISABILITY DEFINITIONS

impai red individual and the social dimensions of dis abili ty and handi cap arise as a direct consequence of individu al impairments.

This view of disabili t y can an d does have op pres s ive consequences

for disabled peop le and can be quite clearly sh own in the method­

ology adopted by the recen t OPCS survey in Britain 1988). The foll owing is a list

(Martin

of questions drawn from

face interview schedule of this survey

et al.,

the face-to­

.

TABLE 1.1 Survey of disabled adults - OPCS,

1986

Can you tell me what is wrong with you? What complaint causes your difficulty in holding, gripping or turning things? Are your difficulties in understanding people mainly due to a hea rin g problem? Do you have a scar, blemish or deformity which limits your daily activities? Have you attended a special school because of a long-term health problem or disability? Does your health problem/disability mean that you need to live wi th relatives or someone else who qn help look after y ou? Did you move here because ofyour health problem/disability? How difficult is it for you to get about your immediate neighbourhood

on your own? Does your health problem/disability prevent you from going out often or as far as you would like?

Does your he alth probl em/ disability make it difficult for you

to

as

travel

by bus? Does your health problem/disability affect your work in any way at presen t?

These questions clea rly ulti mat e ly reduce the pro ble m s that disabled peop le face to their own personal i na dequa cies or func­ ti ona l limitations. It wou l d have been perfectly poss i ble to reformu­

late th ese q ues ti ons to locate the ultima t e causes of disability as w ithi n the p h ys ical apd social environments .

This reformulation is not on ly about methodology or semantics,

it

is also about oppres s ion In order to understand this, it is necessary .

t o und ersta nd t hat, acco rding to OPCS's own figures, people were given face-to-face interviews (Martin et

2231 di sa bled

al., 1988, Table

5.2). In these interviews, the interviewer visits the disabled person at

TH E POLITICS OF DISABLE M ENT

8

TABLE

1 .2

Alternative q uest ions

Can you tell me wha t is wrong with society? What defects in the d es ign of everyday eq ui p men t

like jars,

bottles and

t i n s ca uses you diffi cul t y in holding, grippi ng or turn i ng them ?

Are you r difficulties in understanding people m a inl y due inabilities to communicate with you ?

to

t he ir

Do other people's reactions to any scar, bl e m i sh or deformity you may have, l im i t your daily activities? Have you attended a special school because of your education author­ ity's pol i cy of sen d i ng people w i t h your health problem or disability

to such p l a ces? Are commu n i ty services so por that you need to rely on relatives or someone else to provide you with the right l eve l of personal asist­

ance? What inadeq uacies in you r housing caused you to move here? What are the environmental constraints which m ake it difficult for you

to get about in your i m m ed i a t e neigh bourhood ? Are there any t ra nsport or financial probl e ms which prevent you from

go in g ou t as often or as far as yo u would like? Do porly-designed buses make i t d ifficult for someone with you r h eal t h problem /disability to use them?

Do

you have proble m s

at work because of the

the atti tudes of others?

home

physical environmen t or

asks many structured qu esti ons in a structured way. It is of the i n terview process that the interviewer prese n ts as expert and the disabled person as an isolated individual i n experi­ and

in the nature

enced in research, and thus unable to reformulate the q uestions in a more a p p ropria te way. I t is ha rd ly surprising that, given t he nature

of the q ue stion s

and their direction that, by the end of the i n te rvi ew ,

the disa bled person

has come to believe that his or her proble ms are

caused by their own heal th/ disability p roble ms rather than by the

organisation

of society. I t

is

in this sense that the process of the

interview is oppressive, re i n fo rci ng on to isolated, individual di s­ abled people t h e idea that the problems they experience in everyday living are a direct result

of t heir

own p erson al inadequacies or .

functional limi tations.

But research can have oppressive conseq uences not simply be­ cause d i sa bled peop l e are the passive reci pients of the research process but also beca us e such research has failed to improve t h e

DISABILITY DEFIN ITIONS

9

q u a l i ty of life for them, while d oi ng no

harm to the career prospects researchers. The classic example of this was the often quoted study A Lift Apart ( Mi l l e r and Gwynne, 1 972 ) which has been

of the

savagely attacked by one such ' passive' recipient.

It was clear that Mil le r and Gwynne were d efi n i t el y not on our

Th ey were not really on the side of the staf either. They in fact, basica l ly on their own side, that is the side of supposedly 'detached ', ' balanced' , 'un biased' social s ci e n ti s ts ,

sid e .

were,

concerned above all w i th presenting themselves to the powers that

be as indispensable in trai n i ng ' practi tioners' to m a n age the

problem of disabled people in institutions. Thus the fundamental relationship between them and the res id en ts was

and exploited . (Hunt,

1 981 , p.

that of exploiters

5)

Finally, the theo re ti cal underpinnings of much research on disability

have usualy been so d i vor ced from the everyday experience of disabled people that they have felt victimised by

pr
w ho write articles about

the reac tion s to disability th a t are based more upon theory than

fact.

( Trieschm an n , 1980,

p. xii)

For these reasons more and more disabled people are refusing to

partic ipate in research over which they have no control and which

they regard as l ik e ly to further their oppression .

A WAY FORWARD

This debate over the nature of disability (whether it is ultimately

of disa b led individuals or the structural features and social forces of society ) , is symptomatic of a reducible to the functional limitations

more general debate that has occurred throughout the history of the

social sciences and has cen t red on the notion of methodological individualism. This da n be defined in the following way : Methodological individualism

is

a

doc t ri n e abou t

explanation

which asserts tha t all attempts to explain social (or individ ual ) phenomena are to be rejected

(or, according

to

a

current,

more

THE POLIT ICS OF DISABLEMENT

lO

so phi sti cated version , rejec ted as 'rock-bottom' exp l ana tions ) un less th ey are couched w ho l l y in terms of fac ts a bou t ind ivid u als . ( L u kes , 1 973, p. 1 1 0)

Clearly, neither t he WHO nor the OPCS's s chem es have been able to sh a k e off the shackles of methodological i nd ivid ua li s m which has been c ri t i c i sed thus; M ethod o logi cal individualism is th us an

exc l usiv is t, p rescript ive

doctrine about what exp lanations are to look like . . . it excludes

exp l a n a ti on s w h i c h appeal to social force s, structural features of soci ety, ins t i tu tio� al factors and so on. (Lukes, 1973,

p. 1 22)

been suggested , t h e social sc iences do not have a very in cri tical ly examining do m in an t definitions of d isa bi l i ty nor the pol i cies a nd practi ces to which t hey give rise. This is somewhat surprising, for there is a tradition withi n the soci al As has already

good t rac k-reco rd

sciences which has examined some of the definitions, policies and

p racti ces based upon m e t hodologi cal individualism and underpin­ ning a whole range of other social problems. What is urgently need ed therefore is a soc i a l theory of d isa bili ty , for

A social th eory of d isabi l ity should be in tegrated i n to, rather than separate from, e xisti ng social theories . It has to be re m em bered , however, that person al tra ged y th eory itself has performed a p art i c u l a r ideological function of its own. Like d efi cit theory as an explanation of por ed u ca ti ona l attainment, like sickness as an ex pl ana tion of cri mi nal behaviour, like character weaknes as an explanation of poverty a nd unemployment, and like all other victim blaming theories ( Ry an , 1 97 1 ) , pe rso na l tragedy theory

has served to individ ualise the problems of disability and hence l eave social and economic s tr uc tu res untouched . Social sc i ence in ge ne ra l and social pol i cy in partic ula r have moved far in rejecting i ndividualistic theori es and constructing a ran ge of alternative social ones - let us hope th at perso nal traged y theory, the last in the line, will soon disappear also, to be replaced by a much more ad eq u a te soci al ( op p ress i on) theory of dis abi l i ty. (Oiiver, 1986, p. l 6)

The p urpose

of this

book, therefore, is to attempt to d evelo p

a

DISABILITY DEFINITIONS

11

social theory of disability. A social theory of disability, ho weve r, must be located wi t h i n t he ex perience of disabled people themselves and their attempts, not only to redefine disability but also to construct a political movement amongst themselves and to develop services commensurate with their own self-defined n eed s. This process of re-definition has already ben begun by disabled people who have dispensed with the intricacies and complexities of the definitions discussed earlier and instead propose the following twofold classification.

Impairment lacking part of or all of a limb, or havi n g a defective l i m b , organism or mechanism of the body; Disability the disadvantage or res t riction of activity caused by a con­ temporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities. (UPIAS, 1976, pp. 3-4) What is at stake here is the issue of causation, and whereas previous definitions were u l ti ma tely reducible to the individual and attribut­

able to biological pathology, the above definition locates the causes of disability squarely within society and social organisation. The rest of the bok, th erefo re, will concentrate disability within the context of society and social organisation . It will be argued that the kind of society that one lives in will ha ve a crucial effect on the way the experience of disability is s truc t u red . The focus will then shift to consider the ways in which disab ility is 'prod uced' as an individual and medical problem within cap itali st society. The individual experience of di sa b il i ty within capitalism is itself con­ strained b y some of the structural features of capitalism including ideology, culture and the influence of race and ge nd e r as well as by the activities of key groups and institutions ( professionals and profesions) . These influences will be discussed before, finally, issues of social policy, change and poli t ics will be considered as part of broader developmen� within late capitalism.

2 The Cultural Production of I mpairment and Disability Building upon the distinction made between

impairment a nd disa­

bility, it is poss i ble to argue that both are culturally produced .

Further, in seeki n g to d eve l op a social theory of disability it has recently been argued that

'A theory of d isabili ty . . . then must offer

what is essen ti ally a social theory of impairment . ' (Abberley,

1 987,

p. 9)

While, from an epistemological poi n t ofview thi s may be the case,

for present purposes it is a socia l theory of disability as social restriction t h at is bei n g considered . However, it is pos ble to shc;,w that both i mpai r m e n t and disability are produced in similar ways .

IMPAIRMENT: A STRUCTURED ACCOUNT Recen tly i t has been estimated that th ere are some 50 million

seve rel y · im paired people in the world today , approximately one in

ten of the population ( Sh i rle y , 1 983) . These impairments are not

ra n domly distributed throu ghout the world but are culturally produced . The

societies men live in determine their chances of health,

sick n es and death . To the extent that they have the

means

to

their economic and social e nvironmen ts , they have the means to d etermine their life chances. (Susser and Watson, 1 97 1 , master

p . 45 ) Hence in some countries i m pai rme nt s are likely to stem from

infectious diseases, poverty, ign or ance and the failure to ensure that

exis ti n g medical treatments reach the population at risk (Shirley ,

12

CULTURAL PRODUCTION OF DISABILITY 1 983) . I n others, impairm en ts resu l ting from i nfectious d i seas es

13 are

declining, only to be replaced by those s temmi ng from the agei n g of the population, accidents at work, on the road or in the home, the

very su cces of some medicaJ technologies in ensuring the survival of some severely impaired

children and adults and

so on (Taylor,

in the Third

World , whereas on , are likely to

1 97 7 ) . To put the matter simply, impairments such as blin d n es and are

deafnes

likely to be more common

heart conditions, spina bifida, spi nal inj u ries and

be more common in

so

industrial societies. impairments is not a matter of chance, either acros diferent societies or wi thin a s ingl e society, for Again , the distribution of these

Social and economic forces

cause

bute the proportion of people

disorder directly ; t h ey redistri­

at high or low risk of being afected;

and they create new pathways for the transmission of d i sorde rs of all kinds th roug h

travel, m igra tion and the rapid diffusion of informa tion and behaviour by the mas communication media. Finally, social forces effect the conceptualisation, recogn ition and

vi si bili ty of d i sord e rs . A disord er in one place

and a t one time is perceptions and defini­ tions influence both the provision of care, the demands of those being cared for, and the size of any count of health needs. (Susser and Watson, 1 97 1 , p. 35) n ot seen as su ch in a nother; �ese social

Social cl as is an important fac tor here both in terms of the causes of

impai rmen ts or what DoyaJ ( 1 979) calls dege nerative diseases, and in terms of ou tcomes, what Le Grand ( 1 978) refers to as longs tand ­

ing illnesses.

Just as

we know that poverty is not rand om ly distributed inter­

nation ally or nationally (Cole and Miles, 1 984; Townsend, 1 979) , neither

is impairment, for in the

Third

World at

least

Not only does d isability usually guarantee the pover ty of the victim but, most importantly, poverty is i tsel f a major cause of disability. ( Doy al , 1 983, p. 7) '

There is

a

si mil ar relation in the industrial cou n tries , as is clearly s research ( 1 979) in Britain. Hence, if

indicated by Townse nd

'

poverty is not ra n domly distributed and there is a n intrinsic link

THE POLITICS O F DISABLEMENT

14

between poverty and impai rment, then neither is impairment

dom l y d i s tri b uted .

ran­

Even a structured account of impairment cannot, however, be

red uced to co u n t ing the numbers of impaired people in any one country, locality, class or soc i a l group, for Beliefs about sickness, the

behaviours exhibited by sick persons, sic k persons are res pond e d to by fam i l y a n d p rac titio ne rs are all aspects of social reality. They, l i ke the h ea l th care system itself, are cultural constructions, sha ped d is ti n c tly in different societies and in different social structural settings within t h ose societies. ( K i ei n m an , 1 980, p. 38) and

the ways in which

The discovery of an isolated tribe in West Africa where many of the

population were born wi th on l y two toes illustrates this poi nt , for this made no difference to those with only two toes or indeed the rest

of

the population (Barrett and McCann, 1979) . Such differences as pathological in our society, and the people so afflicted subjected to medical intervention. In discussing i mpai rmen t , it was not in tended to provide• a would be regarded

comprehensive discussion of the nature of impai rment but to show

that

it occurs in a structured way . However

such a view does not

d eny the significance

of germs, genes

and

trauma, but rather points out that t hei r effects are onl y ever apparent in a real social and historical context, whose na t u re is

determined by a complex interaction of m ate ria l and non-material

factors. (Abberley, 1 987, p. 1 2)

This account of i mpai rm en t challenges the notion underpinning personal tragedy theory, that impairments are chance events hap­

pening to unfortunate individuals . What now needs to be consid e red is the evidence on the cultural production of disability, before

conside ri ng

the ways in which d i sa b i l i ty

(as

social restriction) is

structured.

CU LTU RAL CONSIDERATIONS OF DISABI LITY An thropologists have placed culture at the centre of their enterprise

C U LTU RA L PRODUCTION OF DISABILITY

but in

looki n g at disability cross-culturally,

it

has to be s t ressed at

the outset that an anthropology of disability has

w ri t ten .

15

not yet been

Thus, as on e anthropologist has noted

The non- typi cal , the devian t, and the disdained were characteris­ ticaJiy i gnored , treated in footnotes ,

or consid ered within a quasi­ mys tiq ue of the impure or tainted , a symbolic categoriza­ tion, ra ther than u n i ve rsal phenomena in tegrated into other aspects of l ife . (Ablon , 1 98 1 , p . 5)

religious

W here anthropologis ts ( Foster and Anderson, 1 978; Hellman, 1 984) h ave discussed disability, it has been within a framework derived from health and illnes , and domi n a ted by the medical model. This is probably because most ant h ro pologi s ts have internalised the pe rson a l tragedy theory of disability and have therefore seen disa­ bility as a non-problematic category and not one to be s u bj ec ted to cr iti cal analysis. There have ben except ions of course; in the field of mental handi cap Farber ( 1 968) developed the concept of surpl us popul ation to ex pla i n the social s tatus of me_. taly h and i capped people historic­ ally, cros-culturally and contemporaneously, and Edgerton ( 1 967) used anthropological me t hods to study the effects of sti gm a on mentally handicapped people within American soci e ty . Further, while Farber was able to acknowledge the view of d isabil i ty as a social imposition rather than a person al limitation, 'the vicissitudes in the life of the m entally retarded i ndivi dual result primarily from the status and role asigned him ' . ( Farber, 1 968, p. 1 5) He conclu ­ ded that the life-chances of m e ntally ha ndicapped people are determined 'both by being labelled as deviants and by th ei r i n com pe tence ' (p. 1 9) . Edge rton ( 1 976) in his cross-cul tural review of d e via n ce suggests th at disabled people are troublesome but that ' non -wes te rn societies vary in their res pon se ' to this trouble; so me ti mes treating these troublesome people prefere n ti al ly , sometimes toleran tly , sometimes h ars hl y and someti01es even killing them off. But, for him, the c r u ci a l issue is no t that societal responses vary, but why this should be so. The most relevant issue he re is not

tion - or

bl ind n ess ,

w h at causes mental retarda­ wh y

or any other physical d isabil i ty - but

THE POL ITICS OF

16

DISABLEMENT

some cultures regard it as seriously trou b lesom e and others do not. About this subject , we remain almost who l l y i g no ran t . ( Ed ger ton 1 976, pp. 62-3) W i th regard to blindness, Gwaltney's ( 1 970) s t u d y in a Mexican

village showed that it could o n l y be u nderstood in terms of i ts own

culture and not on the basis of pre-exis ti n g assumptions abou t the nature of blindness, a poi n t that has also been made in a compara­ tive study (Scott, 1 969) . Thus Gwaltney suggests The preva i li ng belief that filarially i nd uced blindness is the

con s eq uen ce of omn i po ten t , d ivine intervention tends towards the emergence of an essen ti ally accommodative cultural response. ( 1 970, p p . v-vi)

This cultural response was manifested in the p rovis i on of child

g uides for blind

people, social accolades for those who were deferen­

tial to b l i n d people, social a pprob ri u m to th os e who were not, and

an elaborate system of informal social mech an is ms to ensure the participation and i n tegra t ion of blind peo ple into the community.

Further, there were no attempts t hro ugh their own ind igenous

medical technology or sorcery to provide cures for bl ind ness ,

i ndicating what was an 'essentially accommodative adj u s t men t to blindness'

( Gwal tney ,

1 967) . Thus blindness was not seen as a

tragedy that affected pa rt i c u l a r individuals but as part of the

stru ggle to live i n a harsh environment which could i mpose a number of disas ters on th e community, and hence blindness was a

proble m of the

comm u n i ty

and not for affl i c ted ind i vid u al s .

In the case of d eafness the cl ai ms of the deaf comm u n i ty for

the

existence of a separate deaf culture ( Ladd , 1 988) should make

deafness an a pprop ria te area for anthropo log ical s tud y . However, few have ventured into t h i s territory, wi th the notable exceptions of F a r b ( 1 975) and Groce

( 1 985) .

Groce's stud y of Martha's Vineyard ,

an island o ff the N ew E ngl a n d coastline, shows how deafnes can be

seen as social restriction rather than personal t raged y . There were a much higher proportion of deaf people on the island because of intermarriage and

However,

the presence of a dominan t deafness gene.

the deaf people were not excluded from society and did

not forge thei r own deaf cu ltu re , for everyone knew s ig n

language

and the society was 'functionally bilingual' . There thus existed few

C U LTU RA L

PRODUCTION

OF

DISABILITY

17

social res t ric ti ons on deaf peopl e and the y made a co ns id e ra ble contri­ b u tion to the life of the community. Farb also found th at deafmembers

Amazonian tribe he studied were accorded full social inclusion abi l i ty of the w ho le tribe to use sign language . These studies are i m por tan t , not si m pl y beca use th ey throw l igh t on another culture, bu t because they highlight the way in which we d isab le deaf people in our ow n socie ty . We do this because of our failure to lea rn how to communicate with th e m , not their i n a bi lity to communicate with us. This might sound unrealistic but has to be seen i n the context of our attempts to educate our children in other la nguages , includ i ng dead on es , and the recent pl ans for a n a tion a l curriculum when all children will be taught a foreign language. I ndeed, our failure to perceive signing as another language w it h a l l tha t im plies , but instead to se i t as a mechanical me t hod of communication w hic h daf peop le use, is itself disabling. There have btn few anthropologists who have taken physical disability seriously as an analyti cal category, although a distin­ guished anthropologist, Profesr Murphy of Col um bi a , has a tte mp­ ted to locate his own personal experie nce of d i sa bi li ty within an a n th ropologi cal framework ( Murphy, 1 987) . His bok is not an an thropology of disability bu t a personal accoun t of a journey into disa bility , not dissimilar to the personal accounts of ni netee n th ­ century anthropologists and their journeys to distant parts of th e world and their encounte rs with strange and exotic peoples. While he acknowledges that disability imposes social restrictions, he does not suggest that d isa bi li ty is ca u sed by social restrictions, and the weaknesses in his explana tion of the marginality of disabled people will be discussed later in the ch a p te r. The central p roble ms , therefore in trying to provid e an ad eq ua te theoretical and empirical account of disability cross-culturally, stem from t he pa uc i ty ofexis t i n g material and the location ofw h a t ma te ria l th ere is wi t h i n person al tragedy theory and the medical model. However, by building on the work of those who have ta ken d isa bi lity serious ly , and by reinterpreting exis ti ng material, it is posi ble to move towards a more s tr uc tu red cross-cultural account of d isa b i lity . of the

because of the

D I SAB I LITY: Disabled

A

STRUCTU RED ACCOUNT

people have existed in all

societies and at any given

THE POLITICS OF DISABLEMENT

18

historical period . However, the kinds of d is abl i n g restrictions existed and the experiences

and

col lect ively ,

h ave v aried

of

tha t

disabled people, both i ndi vid u al l y

from

socie ty to socie ty and from age to

age. Two anthropologists, who have taken disability se riou sly as a category for an alys i s , have noted the d iffi cu l ties involved in trying to

p rovid e appropriate ' ethnol ogical data' on physical d isabili ty both

becaus e no

logical or medical clasifi cations exist cros-culturally and

also be ca us e the social disabilities ofindivid uals and groups are pecu­ liar to the social condi ti ons of the particular societies concerned .

For example, carrot-coloured hair is a ph ys ical feature and a

h and i ca p in certain social si t u ations , bu t a person

with

th i s

characteristic is no t included in this clas. Nor is the symptom itself the o nl y cri te rion, for t hough the infantile paralysis may limp as a res u l t

deemed to

be

person afHicted with

of

the disease and be

ha nd icapped , yet t he person with an i l l -fi t ti ng shoe

or a boil on h i s foot may

be

excl u ded . When one introduces the

concepts of other cultures than our own, then confusion is m ul tipli ed . Eve n

societies, i ts

asum i ng the existence of s uch a cl ass in other content varies. The di sfigu ring scar in Dallas becomes

a h onorifi c mark in Dahomey. (Hanks and Hanks, 1 980, p. 1 1 )

Their con tri bution is im porta n t , not least because they recogn i se

that disability and illness cannot be cat egorised

as

if they were the

same th i n g , but they also ackn owledge the cultural and situational re l ativity of both defin itions and experiences

of disability.

Fu rt her , in reviewing material on disability from a wide range of

societies t h ey fou nd t ha t the posi t ions of disabled people 'are as v ari ed as any normal group. The gam ut runs from ruler to outcas t , from warrior to priest, from infant to aged ' . (Hanks and Hanks , 1 980, p. 1 2) From this review it is dear that the individ ualised, tragic view of di s a bi l i ty prevalent in modem ind ustrial society i s not universal by any means. Such variations as do

determined by a focus upon ; th e

occu r

range of

are not random, how ev er,

factors two

but are

of w h ic h Hanks and Hanks

social obligations to and the ri gh ts ofdisabled people They also recog nise the e xis ten ce of othe r

given society . determinants. in a

The

type of economy i s a factor with its varying productive units,

C U LTU RAL PRODUCTION OF DISABILITY

19

man power, amount of surplus and its mode of distribu­ tion . The social structure is important, whether egalitarian or hi e ra rchica l, how it defines ac hievem e n t , how i t v al u es age and sex . To t hese may be added the 'Weltanschauung ' , the position of the group i n relation to its ne igh bou rs , the es the ti c ca non s an d m an y m ore fu n cti o nally related factors. (Hanks and H an k s , 1 980, p. 1 3) need for

Few , if any

an t h ropologi s ts have taken this work seriously and it in any way, though a sociologist (Safilios-Rothschild, 1 970) did a tte m pt to loca te her work in a historical and cross­ cultural fram ewo rk , listing no les than seven factors which may influence prejudice towards disabled people. U n fortun a te ly none of these writers provide a conceptual frame­ wo rk which explai ns and i n tegrates these differences, so while they may have dispensed with the issue of ra ndom n es , the pro b l e m of relativism remains. I n addition, within the anthropological li te ra­ ture, three theoretical perspectives are drawn on, u s u al ly uncri tic­ ally and often i mplicitly , in a t te m pti ng to explain what hap pen s to disabled peopl e . None of these is adequate in itself but they need to be d isc ussed before a more adequate social theory c a n be advanced.

bui lt

upon

I M PLICIT THEORI ES OF DISABI LITY

The first

implicit theoretical underpinning s te ms from

work of Evans-Pritchard

the i n fl ue n tia l

( 1 937) and suggests th a t

in societies

d om ina ted by religious or magical ways of thinking, disability is li ke ly to be perceived as p u n is h me n t by the gods or i ndivi d u al disabled people to be seen as victims of witchcraft. For example, the Wapogoro tribe see epilepsy as a phenomenon that fits within thei r

belief system . E pilepsy is fo r them .something dramatic, frightening a n d inexplic­ able. I t must therefore be a s pi ri t who has taken posession of the patient. Some e pil e ptics may be regarded with a certain degree of respec t on this accoun t . They even can become a mganga should they not be too m u ch afected intellectuaJiy. But mostly the s piri t possessi n g them is s u pposed to be evil. (Aaii-Jilek, 1 965, p. 64)

THE POLITICS OF DISABLEMENT

20

Obviously the way d i s a bil i ty is pe rce ived will be dependent u pon s pecific con te n t of the magical or religious bel ie fs of a given society. The p ro ble m with this ex p l an ation is that it sees rel i gio us or m agica l beliefs as a u tonomo u s and as the sole determining factor i n both de fini n g disability and accounting for the way disabled peop l e are treated in a given society. Even a mongs t the Wapogoro, Aaii-Jilek ( 1 965) found i t ne cessa ry to trea t her ep ileptic patients within the context of their fam ili e s rather than as ind ivid uals req ui ring specific modern medical treatments. Similarly, a study of Nav ajo I ndians (Rubin et al. , 1 965) found a high incidence of limping within the population, d ue to congenital hip the

disease. But because the Navajo did not believe the condition was ei the r stigmatising or d isabli ng, they rejected all offers of modern medical treatment.

The second und erpinnin g is bas ed on the work of Tu rner ( 1 967) and d evelops the concept of 'liminali ty' . This has recently been used to e x plain t he soci a l pos i t ion of d i sa bled people in a l l societies. The long-term physically impaired are neither sick nor well, neither de ad nor fully alive, nei ther out of soc i ety nor wholly in it. They are h u man bei ngs but t h e i r bodies are warped or malfunc­

ti o n in g , leaving their full humani ty in doubt. They are not ill , for illness is

t ra ns i t i ona l to ei the r

death or recov e ry . . . The

s ick

person lives in a state of social sus pe nsion until he or she gets b e t ter . The disabled spend a lifetime in a s imi lar suspended state. They a re neither fish nor fowl; they society as undefined , am big u ou s

exist in pa r ti a l isola tion from people. ( Murphy, 1 98 7 , p. 1 1 2 )

There are two pro ble m s with this ex pla n a ti on; to begin w i th , as has al read y been suggested, in not all soci eti es are disabled people,

or col l ecti ve l y , p l aced on the ma rgins . In addi­ tion, the explan a t ion of the social position of disabled people is reduced to the idea of a binary distinction of human t h ought ( Uvi­ Strauss, 1 97 7 ) or t he search for symbolic order ( Dou g l as , 1 96) . This red uctionism, i s grou nd ed in

either individually

a pa r ti c u l a r kind of d esc ri p ti ve anthropology

societies as, in the

...

which sees

final a n a l ys is , the embodiment not of social and

econom ic relationships, b ut of t h o u g h t systems. (Abberley, 1 988, p.

306)

21

C U LTU RA L PRODUCT ION OF D I SA B I L I TY

and fu rther it perpetuates t h e idea of a m e ta ph ys i ca l oth e r nes s w hi l s t d i rec t '

',

­

i ng atte n t ion away from the real p hysical and social differences

which di s a dv a n t age d isa bled peop l e (Abberley , 1 988, p. 306) .

lead ing to the a b su rd view that There are, however, no strong economic reasons for s yste m atica lly excl uding and a bas i ng the physi ca lly h a nd ica pped

1 987,

.

( M urphy,

p . 1 1 0)

There are, i ndeed , strong econom ic r easons for the e xcl us ion of

a nd it is the embodimen t of these social and relations under ca pi ta l is m which has led d i rec tl y to the excl usion of d i sa b l ed people within ca p i ta l i s t societies . This is a t he m e which wil l be returned to later. d i s a bled people

economic

The third underpi n n i ng is what cou ld be termed t h e

'

su rp l us

po pul a t i on thesis' and argues that in societies w h ere economic survival is a constant struggle, anY, weak or d e pend e nt members who th rea te n t h is s u rvi va l will be dea l t wit h . Thus disabled children may be killed a t birth, d isa b l ed ad u l ts may be forced out of the com munity and disa bled o l d peop l e si m ply left

to die. Th us

Ras m u ssen ( 1 908) cites an example of an Eskimo man and one of his wives who were b a d l y burned in an e x p l os ion The wife was s i m ply .

left to die but; th e husband , if he recovered, migh t aga i n make

an

economic contribution , and so was saved . Nevertheless he resolved the si t u a ti o n by flinging h imse l f i n to the sea.

However,

O n e s hou l d not be misled by the simplicity of economic factors in this case. Th e Australians too had a sl i m margin of surp l us

practised i n fa n t i c ide

,

but see m ed not to have di s posed of the

physical l y h a n dicapped in th is way . Certainly in Australia age was a mark of aut� ori ty as to make t h i s action difficult. The Paiute of the G reat Basin of North America, who had an almost eq ually precarious existence, n eithe r practised in fa n t i ci d e nor a ban d on ed their disabled. ( Ha n ks and Hanks, 1 980, p. 1 6)

And certainly in

relati o n to mentally h an d i capped people, both

THE POLITICS OF D ISABLEMENT

22

Farber ( 1 968) and Sod er ( 1 984} attempt to go beyond economic determinism and point to the role of val ues and ideology in shaping social p racti ces , in cap itaJ ist societies at least. As has recen tly been poi nted ou t ,

As t he historical record has

shown, the definitions of

men tal

retardation have varied in d i rect

correlation with the current soci al values and economic demands of the d efi ni n g society. (Manion and Bers a n i, 1 987, p. 236)

TOWARDS A SOC IAL TH EORY OF DISAB I L I TY a

a t tem pti ng t o d ev e l op

In

soci ologica l not

soci al theory of disability within

a

framework, it is necessary to stres w hat is and what is

being a t tem pt ed . lt is no t the intention

to u se

the

category

'disability' to resolve disputes within sociology i tself, whether t h ey

be abou t economic determi n i s m , relative autonomy, ideology or w h ateve r else. Rather the intention is more limited ; to show that d isa bi l i ty

as a ca tegory can only be und ers tood within a fra m ework,

which suggests that it is culturally produced and socia ll y structured . Central to this framework is the mode

of production, wh a t Hanks ( 1980) refer to as th e type of economy and its varying prod uctive units: th at is to say, wheth er a society has an economy and Hanks

based upon hunting and gathering, fishing, agriculture or manufac· t uring industry, and how it organises the production p roces, throu.gh the household or family un i t, the band or the tribe or the

individual wage

i m portan t

labourer.

Obviously the mode of prod uction has

i mpl i ca tions for disabled members of a

given society. for exam pl e , is l i kel y to be less life·threatening soci e ty than in a nomadic on e .

Restricted mobflity,

in an agricultural However, as has already been su ggested , disability i s not defined

or cu l tu ral l y produced sol el y in terms of its relationship to the mode of production . The core or

p la y , whether these

val ues

cen tral are

values may also have a

based

role

to

upon magical, rel i giou s or

scien tific ways of thinking. Thus a society based upon religious or

magical

ways of thi nking may define disability very d ifferen t ly from

one based upon science or medicine. Thus, in some societies,

someone with polio may be seen as the victim of witchcraft, and som eone with epi l epsy as poses by God or the devil. The i m portant i mplication of this is that d isabi l i ty is not always defined

CULTURAL PRODUCTION OF DISABILITY

23

as a personal tragedy w i t h n egat i ve consequences; i t may be seen as a sign of be ing chosen, as being posessed by a god, and conseq uently,

the person may have their s tatus enhanced.

Taki ng both a his torical and an a n t h ropologi ca l perspective, position can be summed up a s follows;

the

T h ro ughou t h is tory , d i scr i m i n a tory

pra cti ces against the sick and disabled have varied greatly from country to co u n try and from ce n t u ry to century; they have ranged from complete rej ec tion and os tracism to semideification and the according of special privile­ ges an d honors. (Safilios- Rothsch ild , 1 970, p. 4) The poi n t has alread y been made that these differences cannot be expl ai n ed by chance or cu lt u ral relativism, but are cul turally produced through the rel a tionshi p between the mode of p rod u ction and the central values of the soci e ty concerned . There have ben d is p utes over the preci se nature of t h is relation­ sh i p , going back at least as far as Marx and Weber. For Marx, The mode of prod u c tion in material life determines th e gen era l character of the soci al, political and spiritual proces of l i fe . It is no t the consciousness of men that determi nes their existence but, on the contrary, their social existence that determi nes their consciousness. (Marx, 1 9 1 3, p. 266) Weber ( 1 948) took a les deterministic view and attempted to show how crucial the develop men t of Protestant religious values were in s hapi ng the de velop ment of capitalism. This is not the place to enter into these theore ti cal discussions, bu t while acce pti ng th a t pri m acy must be gi ve n to the mode of prod ucti on , there are other factors which also need to be taken into accoun t. In cons iderin g e x perie nces of disability in different soci e ti es , it h as been suggested that all• disabled people have one thing in common,

m aterial pla n.�= the d isab led individual is . . . less able to to the demands of h i s environment: he has reduced power to insulate himself from the assaults of an essenti a ll y hostile milieu. However , the disadvantage he experiences is likely to d iffe r in relation to the na tu re of the society in which he finds himself. (Wood and Badley , 1 978, p. 1 49) On a

ad ap t

TH E POLITICS OF D I SABLEM ENT

24

Two c r u ci al factors in this are the

size of the economic surplus redistributed amongst

produced by any given soc ie ty and how this is the pop u la t ion

as a whole.

The size of the economic s u rpl us available for redistri bution is

impo rta n t for weak

or d epen den t members : those societies with little su rpl us may be forc ed to leave individuals to cope for th e m sel ves , starve or may even deliberately put people to d e ath . On the o the r h and , socie ties which produce very l a rge economic surpluses wiU almost ce r tai n l y have established elaborate mechanisms of redistribution; but who gets what am o u n t will be sign ifican tly influenced by the iedology und erpi n n i ng this redistri bution process. M od em industrial socieites in vari a b l y produce l arg e economic s u rp l uses which are redistributed and a major mechanism for t h i s redistri bution is the welfare sta te . Again, t h e way in w h i ch the welfare state operates is si gn i fica n tl y influenced by the ideologies u n d erpi nni n g it (George and Wilding, 1 976) and in the case of Britain, t he id eol ogy underpinning redistribution for disabled peop l e is personal tragedy theory . Precisely why this should be so, give n that personal \ragedy theory is not the on l y way di sa bil i ty is culturally prod u ced , will be con si d e red later. Th is chapter has shown that this cul t u ral p rod uc­ tion of d i s a b i li ty is dependent upon a v ari ety of factors i n c l udi n g the type of economy, the size of the economic s u rpl u s and the val ues that influence the redistribu tion of this s u rp l u s. The general point to be e m phasised is that or no

our consciousness of

the worl d is a human construction ra the r

mechanical refl ect i on of external real ity . Further­ human construction of the world as perceived is d i ffere n t historical periods and different soci al groups . 1 985, p. 23)

than a m e rely

more, this different in ( Manning,

Before looking at differences be twee n groups within a pa rti c u lar

society we need to

look at how services for disabled peopl e have d evel o ped from a h is t o rical perspecti ve, for 'The history of disability is critical to understanding the contemporary situation and t his has been com pletely ignored . ' (Scott, 1 976, p. 47)

3

Disability and the Rise of Capitalism The s t ressi ng of the need to provide a theoretical explan a tion of u nde rsta nd ­ i n g of it, do not i m pl y the endorsement of the t h eory of historical materialism, n o r its a ppl icab i l i t y to a proper u nderstanding of the n a tu re of d isability, for

d isa bi l i ty and the i m po r ta n ce of d evelo pi n g a historical

I t is not necessary to be a Marxist to recognise that economic conditions have

a

significant i m pact on soc i a l behaviour and

rela tionsh ips between ( Harbert, 1 98, p. 1 2)

differen t

groups of

on

i ndividuals in societ y .

The previous c h ap ters have sugges ted that the defini tions and experiences of disability vary from socie ty to society d e pend in g on a whole range of m ateri a l and social factors . The cr u ci aJ issue to be d iscussed in the next two c h ap te rs is why the view of disability as an ind ivid ual , medical problem and a p ersona l

d o minan t one in modem ca pi ta l is t soc ieties .

tragedy

has been the

Given that no adequate social theory of d i sa bi l i ty has yet bee n advanced, it is necesry to draw upon t he work of some earlier social theorists whoso main concern was to develop an understand' i ng of the rise and progres of capi talis m . Notwi thstanding recent cri tiques of evolutionary approaches to human h is tory (G iddens, 1 984) , it will be suggested that su c h a pproach es , derived particularly from the work of Marx, C om te and Weber, can at least provide a framework to fac i l i ta (e our understanding of the prese n t s i t u a ti on in respect of d i sa bi l i ty . 25

26

THE POLIT ICS

OF DISABLEM ENT

TH E MODE OF PRODUCTION AND H I STORICAL CHANGE

framework derived from historical materialism does, at least, add to our unde rs t a n d in g of what happened to disabled people with the coming of industrial socie t y . A general statement of this view of history is as follows: A

In Marx's view, to understand the nature of h uman beings one environment and the historical nature of this relationship in creating and satis fy i ng human needs. This material environmen t may, in the fi rst instance, be the constraints of the physical environmen t. However, as societies d evelop and become more complicated, the environ ment itself will become more com p l ica ted and com pr ise more socio-cultural constraints. ( Forder et al. , 1 984, p. 89) must understand t h e ir relationship to the m a te ri a l

These socio-cultural constrain ts may include the nature of the living condi tions of people i n rural or urban e n v i ron me n ts and the relationships between i n st i tu t i on s , groups and individuals, all of which are related to t he socio-economic structure of society at particular poi n ts in history. work environment, the

So an understanding of h is torica l process makes possible an unders ta nding of h uman nature and the social rela t ions hi ps which exist at any par ti cu la r point i n time. ( Forder et al. , 1 984, p. 90)

But h is torical materialism is not just about placing social relation­ It also attempts to prov id e an evolutionary perspective on the whole of h u man h istory , and of particular relevance here are the transitions from feudal through capitalist to socialist society. No attempt has been made to apply this (or i ndeed any other social t heo ry ) to the history of disabil i ty, though Finkelstein ( 1 980) has located his accoun t within a material­ ist framework and d eveloped an evolutionary model, broad ly along the lines of the three stages of the historical m a te ri alis t model men tioned above, though withou t using the same terminology. His model is couched in terms of three phases of historical development . Phase I corresponds to Bri tain before the ind ustrial revolution; that is feudal society . Ph ase 2 corresponds to the proces ships within -a historical setting.

DISABILITY AN D THE RISE OF CAPITALISM

27

of industrialisation when the focus of work shifted from the home to t h e factory; that is ca pi ta l i s t society. This tak� us up to the present day , and Phase 3 refers to the kind of society to which we are cu rren t ly moving, though Finkelstein does no t spell out the differ· ences between Ph ases 2 and 3, nor does he comment on w h et he r Phase 3 m arks the beginning of the t ra n si tion to socialism as predicted by historical materialism . The economic base in Phase I , ag ri c u l t u re or smaU-scale i ndustry , did not preclude the great majority of d i sabled peopl e from part ic i ­ pa ti ng in the p rod u c t ion proces , and eve n where the y could not participate ful ly , th ey were still able to m a ke a con t ri b u tio n In t h i s era disa bled people were regarded as i n divid ually unfortunate and not segregated from the rest of society. With the rise of the fac to ry in Phase 2, many more disabled people were excluded fro m the prod uction process for .

The s peed of factory work, the enforced discipline, the t i me· keepi ng and production norms - all these were a h ighl y unfavour· able change from the slower, more self-determined and flexible methods of work i n to wh i ch m a ny handi ca pped people had been integrated. (Ryan and Thomas, 1 980, p. 1 0 1 ) As capi t alism developed, t h is process of exclusion from the workforce continued for all kinds of dis a bled people.

By the 1 890's, the pop ul a tion of Britain was increasin g ly urban t h e e m ploy m en t of the m aj ori ty was industrial, rather than rural The blind a nd the de af growing up in slowly ch a n ging scattered rural com m u n iti es had more easily been absorbed i n to the work and life of those societies wi t h out the need for special provision. Deafness, while working alone at agricul tural tasks that al l children learned by observation wi th little formal schoo ling did not limit the capac i ty for employmen t too severel y Blindness was less of a hazard i n uncongested familiar rural surroundings, and routine tasksi invol vi ng repetitive tactile s kil l s could be learned a n d p rac tised by man y of the bl i nd wi t h o u t speci a l t rai ni ng . The environment of an industrial society was however different. (Topliss, 1 979, p. 1 1 ) an d

.

,

.

Changes

in

the

organisation

of work from

a

rural based , cooperative

THE POLITICS OF DI SABLEM ENT

28

coul d to the to an urban , factory-based one organ i sed around the individual waged labourer, h ad profou n d consequences. system

where

prod uct ion

individual s contri buted what they

process,

'The opera t i on of the la bou r market in the nineteenth century

effec tiv e ly d e pressed h an d i capped of the market. ( Morris,

people of all ki n ds to the bottom

1 969, p . 9)

As a resu l t of this, disabled people came to be regarded as a social

and ed ucational problem and more and more were segregated in insti tu tions of all kinds including wor khou ses , asylums, colonies and s pe c ial schools, and out of the

emergence of Phase

3,

m a ins t ream of social life. The

accord i n g to Fi n k e ls tei n , will see the libera­

tion of d isabled people from the segrega tive practices of society l a rge l y as a con seq ue nce of the utilisation of new technologies and the working toge t her of p rofe ssion a ls and disabled people towards com mon goals . Whether this is likely to be be re t u rn ed

so, is an issue w h i ch will

to i n later chapters.

For Finkelstein, disability is a pa rad ox involving the state of the i n divid ual ( his or her impairment) and t h e state of society ( the social restrictions imposed on a n individual ) . By adopting a three-stage

evol u tionary perspective, he sees the paradox emerging in Phase 2. I n Phase l

disabled individuals formed part of a la rger underclass

but in Phas e 2 t h ey

were

separated

from

th e i r class ori gin s and

became a s pec ial, segregated group, w h e reby the paradox e me rged

be regarded both as ind i vid ua l impairment w h i ch is j ust beginning, sees the end of the paradox w h ere b y d i s a bi l i ty comes to be perceived sole l y as and d i s a b i l i ty came to

and s oci a l restriction.

Phase 3,

social restriction . Like historical m ater i a l i s m , this model has explanatory

power

particularly in helping us to understand wh at h a ppe ned in Phase or with

the emergence of cap i ta l is t

2

society. However, it does tend to

ov e rsi mpl ify w h a t was h appe n i n g prior to this ca pi tal i s t emergence.

I , some kind of ideal ised community exis ted people, amongst other m i nori ty groups, were treated more benignly. While it is ce r ta i n l y true that th e emergence of ca pi tal i s m had profound effects on social rel at i ons generally and I t i m p l i es that in Phase

and that d isabled

that many acceptable social roles and positio n s d is appea red , and

t ha t this d i rectl y affected disabled people in many instances, it is

difficult to assess whether these c ha n ges affected the quality of the positivel y , la rgel y because

experience of d isabi lity negatively or

his tory is silent on the ex perience of di sa bi l i ty .

DISAB I L I TY AND THE R ISE OF CAPITALISM

29

A similar model has been advanced to explain v ari ation s in soci a l

in the modern al., 1 98 1 ) . They suggest that there are three

responses to and personal experie nces of disability world (Soltolowska tl

kinds of society in the modern world ; what they call developing, in termediary-developed and highly-developed or types I, II and I l l . Type I societies are characterised by the spontaneous participa tion

of disabled people; type 1 1 societies are characterised by the separation of disabled people from the rest of society; and type 1 1 I societies are, or shoul d be, characterised by the integration of d isabled

people,

made

possible

by

the

supply

of

'

n ecessa ry

a p pl ia nces This contemporary model, like Fi nkelstein's h istorical one, is o f '.

considerable value in highlighting the importance o f the m od e of prod uction in sig n i fi ca n tly influencing pe rce pti on s and e x perie n ce s of d isability. However, both models are over-simplistic and over­ optimistic. They are over-simplistic in that t h ey assume a simple relationship between the mode of production and perceptions and experiences of d isability , without considering a range of other influential factors, many of which were discussed in the previou s chapter. They are also too opqmistic in

that

both asume that

technological developments will liberate disabled people and inte­ grate them back i n to society. The ambigui ties of the role of t e ch nology in modern society will be returned to in Chapter 8, bu t

for now ,

we need to consider some of the ot h e r factors which of dis abil i ty

i nfluence percepti ons and ex periences

.

THE MODE OF THOUGHT AND H I STORICAL C HANGE A ug u s te Com te also provided an evolutionary model aimed at providing an understand ing of the developmen t

He s u ggested that the human

intellectual

of h uman hi s tory be u nder­ .

process could

stood in terms of three stages of developmen t ; the theological , the me taphysical and the pos i t iv i s t i c stages. This model su ggests that

there has been a shi � from a religious interpretation of rea li t y to a more naturalistic one and fi nal l y to

a sci en t i fi c way of u nderst a nd ing

both the natural and social worlds: each b ra n c h

of our un d erst an d i ng passes through three different

stages: the t heologi c a l or ficti tious s t age ; the metaphysical or

30

THE POLITICS OF DISABLEMENT

abstract s tage ;

and the scien tific or pos i t i ve stage. In o t h e r words,

the h uman mind, by i ts

very nature, employs successively in each three methods of p h i l oso ph isi ng whose character is essentially differen t and even radica l l y opposed: first, the theological method , n ex t the me t ap h ys i ca l method, and finally the pos i t i ve method . Thi s gi ves rise to t h ree kinds of ph ilosop hy or of gen e ra l conce p tual systems about all phenomena which are mu tually exclusive. (Comte, 1 855, p. 2) of its fields of i nvest i g at i on

This evolutionary model has p roved useful in develo p i n g an of changing historical perceptions of deviance ( Kit­ trie, 1 97 1 ) i nc l u d in g d rug addiction, ho m os e x ua li t y , alcoholism and mental illness; each being regarded first as moral , then legal a nd now medical problems. As a result of these pe rcept i ons particular deviants were subjected to moral, th en l ega l and now medical mechanisms of social control. Si m i l ar ly , a recent review of the medicalisation of deviance suggests understanding

that three major par ad ig m s may be id e n t i fied that have held reign over deviance des ign a t io n s in various historical pe riod s : deviance as sin; deviance as cri me and deviance as sickness. ( Con rad and Sc h n e ide r, 1 980, p. 27)

There have been few a t t em p ts to utilise th i s evolut io n ary model to of c han gi n g his to rica l perce ption s of di&ability. H owever, a recent a n aly si s of the ideology of care underlying the devel op me n t of services for men tally h andi ca pped peop l e suggests a similar approach ( Sod er , 1 984) . This a n a l ys i s suggests that initially the care p rovid ed was based upon a philo­ sophy of com pas ion l inked to religious and philan th ropic perspec­ tives; then services were prov id ed based upon the ph i l osop h y of protection, both for the d isa b led ind ivid uals and society; and fina l l y care was p rov ided on the basis of optimism, linked to the develop­ ment of new scientific and ped ago g ic a p proac h es to the problem of develop an understand ing

men tal handicap.

Com te's model has al so been used to illustrate changing patterns of prejudice i n res pec t of people with epil epsy : increasing rationalisation did not ameliorate social prej udice e pi l ep ti cs - it merely caused one form of prejudice to be

agai nst

DISABI LITY AND THE RISE OF CAPITALISM

31

substi tuted for another. H e was no longer isolated as unclean, as a ri tually un tou c hable

person , but instead he was isol at ed as i n sa n e ,

and placed in in s ti t ut ion s where he was su bj ec ted to extremely substandard conditions of life. However later evidence suggests that further rationalisation and i n c reasing knowledge of the causation of epi l e psy , separating it from i n sa n i t y , may lead improvements i n social conditions for e pi lep ti cs

- as

catches up with findings of the scientific community .

to

the culture

( Pas te rn a k ,

198 1 ' p. 227) Th i s op timi s m mirrors op ti m i sm found i n the work of Comte a n d in Soder's analysis of mental handicap, but wh e t her this is justified in

respect of the med ical i sat io n of d isab ili ty will be re tu r ned to in the

n e xt chapter. For now we need to consider two criticisms of this

ev ol u tionary model and its appl i ca tion , one internal and the other external. The internal criticism of th ese models is that the ' phenomena' are

not m utual ly exclusive' as Comte implies. While one percept i on '

may dominate at a particular poin t in history , it does not do so at the

expense of the others. In modem industrial societies, people with by some as possed by d e mons , still

epilepsy may still be percei ved

s u bjec t to legal regulation

(with regard to marriage, work or

d rivi ng ) and yet be t h e recipients of sophisticated medical treat­ ments of one kind or another (Oiiver,

1 979) . Similarly , the explana­ be a medi cal or

tion for the birth of a disabled child will cl ea rl y

scientific one, but that does not mean that some parents may not feel

that it is a punishmen t for some previous sin. Thus, whil e the model

may add to our understanding of c hanging perceptions of dev i a nce

and disability, it cannot and does not explain t he m , in causal terms ,

at least

.

The external criticism concerns thi s issue of causali ty and takes us

ba ck to the Marx/Weber de ba te

and it is clear that chan ging terms of the

perceptions of epile psy cannot be accounted for so l e l y in

mode of thought for The drift to the town a n d the growing com plex ity of industrial machinery at the ti me meant the d eve lop me n t industrial

r

ej ec ts for

of a class of

whom i t was clear that special provision

. The p roble m of s evere ep ileptics in a city such as Br ad fo rd , where the wool trade meant fast moving

would have to be made

.

.

32

THE POLITICS

OF DISABLEM ENT

machinery, an d crowded workshops, mu s t have been particularly acute. Uon es and Tillotson, 1 965, pp. �) Hence the nature of d isab i l ity ca n on l y be understood by using a model which takes account of both changes in the mode of p rod u c­ tion and the mode of thought , and the relationship bet ween them. What now n eeds to be considered is this relationship between the two, and the ways in which the economic surplus is redistributed through social policies w h i ch both meet the needs of the ch an gi n g mode of prod uc tio n and which are co m m en s u rate with curren t soci a l perceptions about what are, and are not, a ppro p ria te ways of d ea li n g w i t h t h i s pro ble m .

STATE I NTERVENTION I N TH E LIVES OF DI SABLED PEO PLE The rise of capi talism brought profound ch a nges in the orga n i satio n of work, in social re lations and a t t i t ud es , and these c h a nges h ad i m p l ica tio n s for family life. These factors, wi th the d e mogra p h i c explosion which accompanied them, posed new p robl e m s for social orde r and with the breakdown of t rad i tion a l social re la tio n s , new p rob l em s of classification an d con trol . The mai n sol u t ion to this problem was the institution ( Rot h m a n , , 1 97 1 ) , and while institutions existed in feudal times, it was with the rise of ca pi ta lis m that the institu tion became the major mechanism of social control . Thus there was a proliferation of prisons, as y l u ms ,

workhouses, hospitals, industrial schools and colonies. The institu· tion was a rem a rkabl y successful vehicle in dealing with t h e p rob le m of i mposing order and it was in accord with cha ngi ng social val�1es con s eq u e n t upon the 'civilising process' ( Eiias, 1 9 7 7 ) and the switch from ' punishment of the body to punishment of the mind ' ( Foucault, 1 97 7 ) . The insti tution was successful because it embodied both re p ressive and i d eo logi ca l mechanisms of control ( A i t h u ss e r , 1 97 1 ) . lt was rep ressive in that it offered the possi b ili t y of forced removal from the co mm un i t y for a n yone who refused to conform to the new ord e r . But it was ideological also, in that it acted as a v i si b l e mon ument, rep l aci n g the p u bl ic s pec tacle of the stocks, the pi ll ory and the gallows, to the fa te of those who would not or could not conform.

DISA B I LITY AND THE RISE OF CAPITALI S M

33

Total institutions work their effects on soci ety through t h e mythic a nd sym bolic weight of thei r walls on t h e world outside, through the ways , in ot her wo rds , i n wh i ch peop l e fantasize, d rea m and fear the archipelago of con finemen t . ( lg na t ieff, 1 983, p. 1 69) t he pri sons and as y l u m s which o pe ra ted as control; t he workhouse as wel l wa s crucial, and its ideological function was always more i m por ta nt than i ts repres­ s iv e one: It

was not

j ust

mechanisms of social

the workhouse rep res e n ted

the ultimate sanction . The fac t that be ad mi tted did not detract from the power of its n ega ti ve image, a n im age that was sustained by the acco u n ts that circulated about the harsh treatment and separation of families t ha t ad mission en tai led . The success of 'less eligibility' in d ete rri ng the able bodied a nd others from seeking relief rel ied h e a v i l y on th e currency of such images . Newspapers, songs a n d goss i p , as well as orchestra ted cam paigns for the aboli tion or reform of the s yste m , all lent support to the deli berate a t tem p ts that were m ad e to ensu re t ha t entry to a work house was wide l y regarded as an awful fa te. ( Parker, 1 98, p. 9) comparatively few people came to

successful m e t h od of in t h e workhouse, a success fu l method of i m pos ing d i sc ipl i n e on the pote n tia l workforce. But it still faced the age-old problem of separating o u t those who wou l d not from those who could not conform to the ne w order. Hence t h rough o u t the eightttnth and ni n e t ee nt h centuries i n sti t u ­ tions became ever more specific in their purposes and selective in t h e i r personnel. This d istinction between t h e d eservi n g and t h e undeserving, which h a s s haped the developmen t of welfare pol ic i es throughout h i s tory , has never been satisfactorily resolved . These d evel op me n ts the n , facili tated the s e grega t i on of disabled people, initially i n workhouses and asy l u ms , but grad u a l l y in m ore s peci alist establishments of one kind or another: In t he

insti tution , the state had found a

dealing with

the

p rob le m of order, and

the rise of s pe ci al i s t as y l u ms s igni fied an i m por t a n t shift in the way in w hi c h the por, d epe nd e n t and deviant were con ta i n ed . . . Public work house s , as op posed to d o mes tic relief, were increasingly used for al l those who co u l d not or would not s upport themselves

34

THE POLITICS OF D I SABLEM ENT

eco no m ically . In these, id i ots , lunatics, the chronic sick, the old and vagrants were mixed up w i t h allegedly able-bodied u nem ­ ploy m e n t . ( Rya n a nd Tho ma s, 1 980, p. l OO) However, it q u i ckl y became clear that workhouses

could

not

d u m pi n g grou nds for such disparate groups of people. A crucial issue was that of se parat i n g out those who could not work from those who could but wo ul d not; effective d is c i p l i ne and deterrence req u ired these groups to be sepa rated from each o t h er . But further s epa ra tio n a n d s pecia l i sation was n ecessary wi th i n the former group in order to successfully m a n age and control this group i n ways that were socially acceptable at the time. The Poor Law Amendment Act ( 1 834) p l ay ed an i mporta n t part in t h is process of increasing specialisation and the d i sabi l i ty category was crucial i n separati ng out those u n wi ll in g from those unable to sim pl y funct ion as resid u al

work. In

the reg ul ation s

of the Poor Law ad ministration and thus in the

eyes of the Poor Law administrators, five

categories were i mpor­ in defining the i n tern al universe of paupers; children, the sick, the insane, 'defectives', and the 'aged and infirm'. Of these, all bu t the first are part of today's concept of disability. T he five groups were the means of d efin i ng who was able-bodied; if a person didn't fall i n to one of t hem , he was able-bodied by d efault. tan t

This stra tegy of defini tion by default remains at the core of current

d isability programs. None provides positive d efinition of

'a bl e- bod i ed ' ; instead, 'able to work' is a residual category whose me a ni ng

the 'unable to work' categories precisely defined . (Stone, 1 985, p. 40)

can be known only afte r

have been

l t wou ld be a m istake to imagine that the succes of the insti tu t ion all or even a majority of disabled peopl e ended up in on e . I n fe ud a l times th e fa m il y and the community were t he p laces in which d isabled people existed . With the co m i n g of capi talism the family remained the set ti ng w here t he m ajori ty of d i s a b l ed peo pl e lived out th e i r lives. Wha t did c h an ge h owever , par tl y as a conse­ quence of the ideological climate created by institutions setting people a part from the rest of society, was t h a t disability became a th ing of shame; the process of s tigmati sation ca ught the deserving as we l l as the undeserving. But not all fam i lies could cope with meant that

35

DISABILITY AND THE RISE OF CAPITALISM

difficulties of hav i n g disabled people segregated within them , parti­

cularly work i n g-c lass families which were al read y u nder press u re in

t h e n ew cap i tal i st social o rd er . Hence disabled peop le became seg rega ted from their communities and wider soci e t ies and , only when the fa m i l i es were un willing or

u n a b l e to cope, did they become

possible c an d id a te s for the institution.

Nobody wanted to go into an i n s ti t u t ion but not every rel a ti ve found it posible to keep their dependent kin, especially so it seem s , the mentally disordered and the aged . ( Parker,

1 988,

p. 23)

Both the family and t he institution, therefore, became places of

segregatio n . But, as fa r as t h e balance between i nstitutional and

fam i l y provision for d isabled peop l e is concerned

We know next to no t h i n g about this, b u t it is reasonable to suppose, for ex am ple ,

production i n

that t h e undoubted decline in d omestic

the o u twork

ind ustries, the a r t i s a n al

sector a n d

the

cottage economy of the agri c u l t ural labourer made it m o re

difficult for por families, particularly women , to provide d o mes­ tic care for the aged and insane. ( l gnatieff,

1 983, p. 1 72)

Thus, as a con seq uen ce of the increasing separa t i on between work and

home, the boundaries of family

obligations towards d isa bl ed

people were re-drawn; so the new asylums and workhouses met a need a mon g por families struggl i ng to cope wi th 'burdens which for

the first time may have been felt to be unbearable' ( l gn a ti eff, 1 983) . Th i s d i s t i nc ti on betwe n segregatio n in the fam ily and in the ins t i t u tion remained into the twe n tie t h century as t he state became more interventionist and the fou n da t i on s of the welfare state as

we

know it tod ay , d eve loped . As one commentator puts i t

The provis ion o f personal

care

a nd p ractical assistance to disabled

peopl e falls into two mai n divisions , that of res id e n t i al care and

th a t of s u ppo r t and assistance to disabled people in their

own

homes. (Topliss, 1 982, p. 7 7 ) W h a t has chan ged i n t h e tw e nt i e t h century has been t h e balance

THE POLITICS

36

OF

DISABLEMENT

between i ns t i t u tional and family care. To

be

sure, there has been a

'de-ins t i t utionalisation' or 'decarceration' movement in the latter pan of the twentieth cen t ury and undou btedly many people pre­ viously in i nsti tutions have ben returned to the com m u n i ty . The clos u re, initially of the workhouses and colonies and later the longstay hospitals has undoubtedly put many thousands

of

those

previously inca rcerated back i n to the community; but two poin ts need to be made about this. Firstly, within the different groups of people who are poor, old sick, disa bled , insane and so on, just as the proportions within each group who were institutionalised , were different, so too have ben the rates of d ischarge back into the comm unity. Secondly, while the n u m bers of people may vary significan tly, the ideological shift from insti t u t ional to comm un ity care has been m uch more significant. As far as d isabled people are concerned , the m ajority have always lived in the community, albeit sometimes segregated from i t , and so perhaps the shift has been more apparent than real. A similar poin t has recen tly been made i n an analysis o f the his torical developmen t of social control w i t h the rise of capi talism. There have been two transformations - one transparent, the other opaq ue, one real, the other even tually illusory - in the master patterns and s trategies for controll i ng deviance in Western i nd us­ trial societies. The first, which took place between the end of the eighteenth and nineteenth cen tu ries, laid the foundations of all deviancy control systems . The second , which is supposed to be happening now, is thought by some to represent a questioning, even a radical reversal of that earlier transformation, by others merely to signify a con tinuation and intensification of i ts patterns. (Cohen,

1 985,

p.

1 3)

Rather than consider here whether these transformations actually mean

a

loose n i ng of the s tructures of social con trol or not, what now

needs to be considered is why these changes took place.

E X P LANATI ONS - BAC K TO COMTE AND MARX

I n seeking to explain, rather than merely descri be , what happened to disa bled people w i th the com ing of capi talist society, it should be

DISABIL ITY AND T H E RISE OF CAPITALISM

37

po i n t ed o u t th at m ove men t away

both th e movement to i ns t i t u tiona l care and the from i t will be i ncorporated within the same ex pl ana tory fra m ework The first e x pl a n at ion d ra ws he a v i l y on the Comtean framework and suggests that what happened to disab l ed people, and others , can be seen as th e p rog ress ive evol u tion of reason and h um a n i t y , and that the move from communi ty to institution and back again , reflects changing ideas about soci a l progress. This view is what Abrams ( 1 982) calls the enlightenment theory of social welfare' and i ncorporates the establishment of segregated institutions in Benth­ amite terms as improvements on earlier form s of provision . Further it also incorpora tes variants of the anti-institution movement of the late twentieth century, sparked of b y the work of Goffinan ( 1 96 1 ) and a number of damning p u bl ic enquiries about t he conditions i n longstay hos p ita l s suggesting that the move back t o com mun i t y care reflects our changing ideas abut t he appropriateness of institu­ tional provis ion in modern society. What it fails to e xplai n however, is that m an y of those confined to i nsti t u tio n s experienced t h i s as p u ni s h m e n t rather than t re a tment, and indeed, as recen t studies have made clear (Scull, 1 977), return to the co m m u n i t y can a l so be an ex treme l y p u n i tive expe rie nce Ch a ngi n g ideas about the nature of th e institution and of commun­ i ty i n corpora t ed in the e n l ig h t en m e n t theory are thus .

'

,

,

.

too one-d i mensional to be altogether sa tisfac tory . It recognises, one m i ght say , that men make their own h i story but no t the equally i m portan t fact that they do not make it just as they plea se Of co u rse men act on the basis of id eas but the ideas they have a t a n y pa r t i c u l a r time a nd still more the influence of these id ea s i s n o t j u st an i nte l lect ua l matter. M a n y g ood ideas ne v e r get a hea ri ng; many bad ideas flourish for generations. (Abrams, 1 982, pp. 1 1 - 1 2) .

The s uccess or failure of t hese ideas are dependent u p on a whole range of other factots such as the economic and social co nd i tion s under w h i c h they d evelop and the support or resistance t hey encoun ter from people in powe rfu l pol i t i ca l positions and institutions . The second e x p l an a tion draws on the Marxian model and sug­ gests th a t ch anges in' policy and provi s i on for disabled peop l e were dete r m i n ed by c h a n ges in the mode of production. Thus

38

THE POLITICS OF DISABLEM ENT

of the n i neteen th century were . . . as much the result in work and family life, and cor responding methods of conta i nin g the por, as they were the i nspi ra tion of philanthropists and scientists. With other similar i nsti tuti ons of the period , they have remained the ma in alternative to the family ever since . (Ryan and Th om as , 1 980, p. 1 0 1 ) The as y l ums

of far-reach i ng changes

Similarly, the change back to communi ty care was not simply the prod u ct of anti-institution ideas , which had been around in the nine teenth as well as the twenti e t h cent uries, but also beca us e ' segregativ e modes of social control became . . . far more costly and p. 1 35) . This explanation is what Abrams ( 1 982) calls 'the necessity theory of social welfa re' and incorporates not just the econ o mi c rationality u nd erpi nn i ng much social provision but also the need to im pose and maintain order in the ch a n gi ng industrial world. While this the ory

difficult to justify' (Scull, 1 97 7 ,

attention to the ways in which social facts and impel men to act in certain ways . . . it corrects the bland tendency of enlightenment theory to detach ideas from their soci al context. But at the same time it ten d s to deny the equally important fact t ha t what men do in the face of even the most cons trai ni ng social condi tions is indeed some th i ng they choose to do. (Abrams, 1 982, pp. 1 2- 1 3) forces

us

to pay

conditions constrain and

ne i the r the i nst i t u t ion nor community care can be explained in terms of humanitarianism or necessity. The ' action theory -of welfare' is also i mportant and Parker ( 1 988) , in his historical review of residential care, suggests two factors of relevance. Firstly he s u gges ts that the willingnes, or otherwise, of families to care for their dependents was i m po rtant and he cites historians like lgna tieff ( 1 983) who have claimed that 'the working clas family have played an active ra t he r than a pasive part, in the h istory of institutional development' . Thus he suggests that

But

s ol e l y

the level of

demand for

care seems to have been a that care as perceived by they consider they and their fa m ili es after the dependent or disruptive

institu tional

fu nc t ion of (a) the acceptability

relatives; (b) the cos ts which bear i n continuing to look

of

D ISABILITY AND THE RISE

OF CAPITALISM

membe["; and (c) the numbe[" of d e pendent ["d a ti ves . ( PaTker, 1 988, p. 24)

39

peop le without close

Some families have also played an active part in seeking to have re l a tiv es removed fmm longstay hos pi tals , special school s and childTen's homes, though as the defects i n community care become more and more a ppa re n t , other families are acti vely cam paign ing fol" institutions to remain. Seco nd l y , he suggests t h at institutions have been i mpoTtan t historically because of the role t he y have played in ca mpaign s of res c ue , notably of childTen in t h e latter half of the nineteenth century. Th is rescue mission was also an important facto[" in the d evelopment of residen tial cal"e for disabled peopl e after the Second World War, when the Cheshire Foundation supposedly 'rescued' many disabled adults fmm isol a ti on in families, fmm longstay hos p itals , from geriatric wards and other unsuitable provision . That history may subsequently reinterpret such action as incarceration rathel" than rescue does not invalidate the actions of individuals at p art icu l ar historical points. Thus while the 'action theory of wel fare' may not ex pl a in the forms that provision may take when ex tTa cted from historical context, it is useful in developing an understanding of the precise nature and form of that provision , consequen t upon the i n fl uence of individuals, families and groups at a particular point in time. However, wha t the action theory does not explain, acco rd i n g to A bra ms ( 1 982) , i s that some groups 'prove persistently more influential than othe rs' , necessi tating the developmen t of a 'power t heory of welfare'. U nd o u b tedly the group that has bee n most persistently infl ue n t i a l in the context of disability, has been t h e medical profession and this will be discussed more fu l ly in the following chapter. Before that, there is o ne further ex pl ana tion which needs to be discussed and this draws upon Weberian notions of rati on al i ty , t h ough it does also i n corpoTa te elements of th e necessity theory. RATIONALI SATION - D I SAB I L ITY AS AN ADM I N I STRAT I V E CATEGORY

different from that d is c ussed previously that it takes d isability itself seriously as a

The wor k of Stone ( 1 985) is i n this chapter in

40

THE POLITICS OF D I SABLEM ENT

theoretical category and grou nds i ts theorising in a dis c u ssion of t h e development of w elfa re poli cies in respect of disa bili ty in Britain, the USA and Germ a ny . Whil e ma king no reference to the work ofW e ber , the argument she presents can be located in his notion of the develop­ ment of capitalism bei ng a cco mpanied by an increasing 'rationalisa­ tion' of the world . Weber's a pproach can be summarised thus: By 'rationalisation ' Weber meant the process by which explicit , abstract, calculable rules and procedures are increasingly substi­ tuted for sentiment, tradition and rule of thu m b in all spheres of activity. Rationalisation leads to the displacemen t of reli gion by s pe cial ised science as a major source of intellectual authority; the s u bs ti tuti o n of the trained expert for the cul tivated man of letters; t he ousting of the s ki lle d hand worker by machine technology ; the replacemen t of tradi tional judicial wisdom by abs t ract , systematic statu tory codes. Rationalisation demystifies and instrumentalises

life. (Wrong, 1 970, p. 26) In respect of p rov isi on to meet the changing needs of d i sa bled people wi th the development o f capitalism, th i s was done thr-ough the e l a bora ti on of ever more detailed systems of bureaucratic organ isa­ tion and administration . Stone's ( 1 985) basic arg umen t is that all societies function through the 'distributive prin ci ple ' in that goods and services p roduced have to be allocated amongst the population as a whole. Th e major mechanism of distribu tion (and p rod ucti on ) is work, but ri ot everyone is able or will i n g to work. Thus a d istributive system based on need will also exi s t and the 'distributive d ilem m a ' centres on how to allocate goods and services based upon the very differen t principles of work and need. With the rise of capitalism, disability has become an important boundary category through which people are allocated either to the work-based or need s- based system of distribu tion . The increasing specialisation of both categorisation and provision is thus a function of t he increasing rati on al i sa tion of the world . This e x pl a n ation incorporates ele ments of necessi ty theory, both in the n eed to redistribute goods and services and in rela ti o n to labour supply. The di sabil ity concept

was

essen t i al to the development

of

a

DISAB I L ITY AND THE RISE OF CAPITALISM

41

workforce in e a rly capi t a lis m and remains indispensable i nstrument of the state in con trolling tabor supply. p.

as a n

(Stone, 1 985,

1 79)

However, it fails to acknowledge the contradictory aspects of rationa lisation noted by Weber in the distinction he makes between formal rationality and substantive rationality ( Weber,

1 968)

and the

possi b le to argue, as Stone does, that the formal rationali ty underpinning the disa bil i ty category makes it the asc ription of privilege, in that it offers legi timate social status to those clasified as unabl e to work . But the substan tive rat ionaJi t y , enshrined i n the experience of disabi l i t y , is way the latter may con trad ict the former. I t is

much more concerned with the processes of stigmatisation and oppression . Stone acknowledges the contradictions inheren t ment of capitaJism discussed both

in the develop­

by Marx and

Weber, and

pol i ti cal versions of con tra­ diction theory ' . In the economic version, the s tate experi en c es a discusses what she calls 'economic and

fiscal crisis because it must constan tly expand its expenditures while its revenues cannot grow fast en�ugh to meet these expenditures . The political version streses 'legal rights t o social aid ' which engenders poli tical support from some sections of society

but

opposition from others. &th versions p red ic t even tuaJ system breakdown because of either economic crises or t he erosion of political support. However, by concen trating on the boundaries between various parts of the capitalist system , rather

t h an on its

i nternaJ logic she concludes that a concept tha t mediates the fli cting distri butive prin ci p l es offers a

The in terpretation of d isability as

boundary between two

con

very different an swe r to t he q uestio n of co-existence. (Stone, 1 985, p.

20) the short term , therefore, is that the d isabil i ty it is rocially constructed and flexible, can resolve

The answer, at least in category, because

an y systemic contradictions that may occur.

By the late twentieth century, however, Stone notes that the

d isability category has become less flexible eligibility get m o re and more d e ta i l ed ;

as

once

the stand a rd s for

certain grou ps are

accepted into the category they cannot be ejected

from

i t ; peopl e

THE POL ITICS OF DI SABLE MENT

42

become socialised into their role as disabled; and disability categor­ isation is legitimated by the med ical and welfare bureaucracies . This has provoked a crisis in disability programmes which may not be s u bject to categorical resolu tion, for Keepers of the category will have to elaborate

ever

more situa­

tions in which people are legitimately needy, until the categories became so large as to engulf the whole. (Stone, 1 985, p. 1 92)

If such

a

si tuation

were

to occur, where the distribu tive dilemma

was resolved on the basis of need , then that would surely mark the transition from capitalism to socialism predicted by Marx. But that is to go too far, too fas t , and we need to resume the consideration of what d isability under capitalism is actually like rather than consider what it might be l ike under socialism. This chapter has attempted to discuss disability in the context of the rise of capitalist society and has suggested that economic development, the changing nature of ideas and the need to maintain order, have all influenced social responses to and the experience of it. The rise of the insti tution

as a mechanism of both social

provision

and social control has played a key role in structuring both perceptions and experiences of disabili ty, and facilitated the exclu­ sion of disabled people from the mainstream of social life. Within this, the ideological dimension has been at least as i mportant as the physical provision of segregated establishments and i t is precisely this ideological dimension which is now being challenged with the development of communi ty care. What needs to be considered next is the way the i ndividualisation of life under capi talism has contri­ buted to the individualisation of disability and the role of powerful groups, notably, the medical profession , in this process.

4

The Ideological Construction of Disability No a t te mp t to d eve l op a social theory of d isa bil i ty can issue of ideology for

i gn ore

the

there is a dear re la tion s h ip between prevailing social structures ,

domi na n t

ideology and the way society handles its deviants .

( Abbot and Sapsford,

1 987, p. 7)

But part of the problematic

for

so ci al theory

is that there is no one

u n i ve rs a l ly agreed defini tion of ideo logy , and indeed, in some

d efin i t ion s , the very nature of ideology is to obscure the relationship between social structures, social pol i ci es and the treatment of deviants.

be characterised by a set of val ues or beliefs u nd erpi n ni ng social p rac ti ces , whether t hose social pract i ces be the work process, medical i n te rvent io n or the provision of welfare s e rv i ces . But that itself is no t e nou gh , fo r , by l eavi ng it there, social co n sci o us n ess can be reduced to a pl u ra l is t vision of sets of compet­ Here, ideology w il l

i n g ideologies. Hence it is necessary to turn to the work of Gramsci ( 1 97 1 ) who attempted. to p rov id e a spec ific li nk between social

structures a nd i deol dgi es by disti n gu is h i n g between what he called 'organic' and ' a r b i t ra ry ' ideologies.

But, further, he a tte m p ted to add ress the is s ue of power dominant ideology through the development of the con­ cept of hegemo ny 'fhich becomes more all-bracing th an ideology and

·

for I t is the sheer taken-for-gran tedness of h ege m o n y that yi e ld s its

full affects

-

the ' naturalness' of a wa y of thinking about social,

economic, pol i t i ca l

and ethical issues . ( H a m i l ton , 1 987, p. 8) 43

THE POLITICS OF D I SABLEM ENT

The hegemony that defines d isability i n capitalist society is consti­ tu ted by the organic ideology ofindivid ualism, the arbi trary ideologies of medicalisation underpinning medical in tervention and personal tragedy theory u nderpinning m uch social policy . I ncorporated also are ideologies related to concepts of normality , able-bodiedness and able-mindedness. These ideologies wil l be the subject of the next two chapters and the issue of hegemony will be returned to subsequently .

I N D I V I DU A LISM AND I D EOLOGY

The ways in which the rise of capitalism excluded disabled people from the process of work and its consequent social relations was described in the previous chapter. But it also changed the way

disa bled people were viewed , for 'Capital ism , whether free market or welfare, encourages us to view people . . . as a commodity for sale in the labour m arket. ( Burton, 1 983, p . 67) The req uirements of the capitalist economy were for individuals to sell thei r labour in a free market and this necessitated a break from collectivist notions of work as the product of family,and group involvemen t. I t demanded nothing less than the ideological con­

struction of the individual. Or to put it in a slightly differen t way, 'Thus individ ualism is seen as being the ideological foundation upon

which the transition to capitalism was based. ( Dalley , 1 988, p.

32)

That this ideological construction of the individual was rooted in history, Marx had

no

dou bt.

The further back we go into history, the more the individual, and , therefore, the producing i nd ividual seems to depend on and constitute a part of a larger whole: at first i t is, quite naturally, the family and the clan, which is but

an

enlarged family; later on, it is

the community growing u p i n i ts different forms out of the clash and the amalgamation of clans. ( Marx, 1 9 1 3, p. 267 ) Hence, i ndividuals always existed but only

as

part of larger social

groupings whether they be families, clans or communities . It was only with the rise of capi talism that the isolated, private ind ivid ual appeared on the historical stage. It is but i n the eighteenth century, in ' bourgeois society' , that the

I DEOLOG I CAL CONSTRUCTION OF DISA B I L ITY

45

different forms of social u n ion confron t the individ ual as a mere means to his private ends, as an ou tward necessity. But the period in which this view of t he isolated i ndividual the very one in which th e

becomes prevalent, is inter·relations of soci e ty (general from

this poin t of view) have reached the highest state of developme n t . ( M a rx,

1 9 1 3, p. 268)

This h i ghes t state of deve lop me n t (that is, the rise of capi talis m )

did not simpl y bring with it new p ro b l ems for social order and social control . I t also required new ways of seeing or constructing these problems of order a n d con tro l . Within this set of problems, the 'body'

-

the body of i ndividuals

and the body of populations - appears as the bearer of new variables, not merely

between the scarce and the n umerous, the

submissive and the restive, rich and poor, heal t h y and sick, strong and weak, but also between the more or less uti l i za b l e , more or

les ame na bl e to profitable investment , those with greater or leser prospects of survival, death and i ll n e ss , and wi th more or less ca pacity for being usefully trained . ( Foucaul t , 1 980, p. 1 72)

This, then, is t h e ideological underpinning for the sepa ration and

specialisation processes which took place wi th the rise and develop· ment of the institution a n d which were described in the

previous

chapter. or

Further·, as Lukes as pointed out, thi s i deologi c al construction of, way of seeing, the i ndivid ual not only legitimates one view but

delegiti mates others . But every way of seeing is also a way of not seeing; and in this case a view of man as essentially property�wning or self-interested or 'rational' or co n ce � e d to max i mise his util ity amounts to the

ideological legitimation of a particular view of society and social relations - and

the implicit delegitima tion of others. ( Lukes,

1 97 3 ,

pp. 1 49-50) I n relating this d iscussion to d i s abili t y , it is not the ideological

construction of property·owning, seJf.interested or rational ind i ·

viduals t h a t is i m portant . Rather it is the co n s t ru c t io n of 'able· bodied ' and 'able-minded ' i ndividuals which is significant, with

THE POL ITICS OF DISABLEM ENT

46

th e i r

phys i cal capab il i t i es of o pe rat in g the new machines and their to subm i t to the new work disciplines imposed by the

willingness fa c to ry .

This pa r t i c u lar id eol ogica l construction can best be understood within Gramsci's dis ti nc t ion between 'orga ni c' and ' a rbi t rary ' id eo logies .

O ne m us t dis ti ng u is h between historically o rg a n i c ideologies, thos e , that is, which are n eces sa ry to a given structure, and ideologies that a re arbitrary, rationalistic, or 'willed'. To the extent that ideologies a re his torically necessary they have a validity which is 'psychological'; they ' org anise ' human masses, and cre a te the terrai n on w hi ch men move, acq u ire consciousness of their position, s t ruggle, etc. To the extent that they are arbitrary they only create individual ' movements' , pol emics a nd so on. ( G ra m sci , 1 97 1 , p. 377) These o rga n ic and a rbit rar y ideologies, would b e t te r be cal le d 'core ' and 'peripheral', precisely because they are interrela ted and interdependent; in this part i c ula r case the core (organic) ideology of individualism gives rise to the ideological co nstr u ct i o n of t he disabled individual as the a n t it hes i s of a b l e-bod iedn ess and able­ mindednes, and the m edicalis at i o n of d i s ab i l i ty as a particular kind of pro bl e m . Precisely how this construction occurred now needs to

be discussed .

TH E

INDIVIDUALISATION AND MEDICALISATION OF

DISAB l UTY How d isa bi l i ty came to be conceiv ed within the co re ideology of

an individual problem , can be understood by the work of Foucault in general and his work on madness in parti cul a r ( Foucault, 1 965) . His views have been summarised as fol lows : individ ualism as

refe rence to

The very idea that 'madness' is individual pathology, a negative phenomenon, a defect to be remedied , is the object of his investigation . This concept of madness is not the achievement of psychiatric ration al i ty . Rather it is a complex and non-intentional

I DEOLOGICAL CONSTRUCTI O N OF DI SABI LITY

47

social prod uct, which formed the basis for psychiatry. ( Hirst and Woolley, 1 982, p . 1 65 ) Thus, for Foucault, psych iatry as organised professional acttvtty only becomes poss i bl e when ( i ) madness has ben transformed from a diverse set of social valuations to a uniform category of pathology, and (ii) the m ad have been excl uded from no rmal social life and isolated in a specialist domain. Central to the argument is that t here can be no such thing as madness without the idea of 'unmadness'; reason wi thou t unreason, to be less clumsy. If we pursue this in relation to disability, then perhaps things will become clearer. The idea of disability as i nd i vi d ual pathology only becomes posible w hen we h ave an idea of i ndivid u al able­ bodiedness, wh i c h is itself rel a ted to the rise of capitalism and the development of wage l a bou r Prior to this, the individual's contribu­ tion had been to the family, the community, the band, in te rms of labour, and wh i l e , of course differences in individual contributions were noted, and often sanctions applied, individuals did not, in the mai n, suffer exclusion . Under ca pi talism that is precisely what happened and disability became; individual pathology; disa bl ed people could not meet the demands of ind i vidual wage labour and so becam e controlled through exclusion . This proces of exclusion was facili tated by focusing on the body, of individuals and populations, and with the rise of capi talism , the main group who came to focu s their gaze on the body, was the medical profesion . As disabled peopl e were part of the p rocess of control by exclusion, the m ed ical is ing of di s a bil ity was con n ec ted to th e rise of t he med i ca l p rofess ion and the developmen t of t h e germ theory of illness a nd d ise ase . .

'

'

A cl assi c illus tration of the medical model is the germ th eory derived from th e sci�ntific medical work of Pasteur and Koch in t h e nineteenth century; their work established a sci en ti fic basis for the emergence of medicine as a profession equipped with a satisfactory knowl edge basis. The medical model is not concerned pri marily with que5tions of p reven tion since it approaches the problem of disease through the experience of germ theory which i nvol ves a highly interventionist and specific form of medical practice. Germ th eory was si mp l y one component with i n a wider scientific revolution in Victorian medi cine ( Tu rner, 1 987 , p. 2 1 4-) ,

.

48

THE POLITICS OF DISABLEMENT

Th i s a pproach , based upon the medical model, igno res th e

ex peri e n ce of illnes and disease an d negl ec ts issues of prevention. I n

additi on many o f the major disorders in modern socie ty have no known biochemical cause or are unresponsive to medical treat­ ments. F i n aUy , this approach ignores the i nfl uence that cultural, or

even sulrcultural factors, may have upon the disease process. Despite these well-known criticisms, it

remains

true that in the

twen ti et h cen tury, we have seen an increasing medicalisation

of

soci e ty; medicine has acquired the righ t to define and trea t a whole range of co nd i t ions and prob l ems that p reviously would h ave been as moral or soc i a l in origin (Conrad and Sch neider , 1 980 ; Man ni ng and Oliver, 1 985) .

regarded

That d i sa bili ty h as

beco me

medicalised , t he re

can b e no doubt. of d isa bled peop l e from the determination of whether a foetus is handicapped or not th ro ugh to the deaths of old people from a va riety of d is a bl i ng conditions. Some of these involve men ts are, of course, e n ti rely appropriate, as i n Doctors are centrally involved i n the l i ves

the d i agnosis o f impairmen t, the stabilisation of medical con d i tion

after trauma, the t rea t m en t of illnes occu rring i nd ependen t of disa b i l i ty and the provi sion of ph ys ica l rehabili tation. But doctors

are

a

l so involved in assessing driving ability, prescribing wheel­

cha i rs , determining the

a llocation of financial benefits, selecti ng educational provision and measu ring work capa bilities and poten ­ tia l ; in none of th ese cases is it i m med i ate l y obvious th at medical training and qualifications m ake doctors the most ap prop r ia t e persons to . be so i nvolved . Not only that, but many of the ne wer professions such as physiotherapy, occ upat iona l th era py, health

nursing an�l. even teach i ng , either work in organisations do m i na ted by doctors or have their profesional practice structured by a discourse based upon the medical model . There have, o f course been substa n tial gai ns from this medi cali sa ­ tion of d isa bi l i ty , which has increased survival rates an d prolonged life expec ta ncies for many disabled people as well as eradicating v is i ting ,

hierarchically

some disabling conditions.

But the issue for the late twen tieth

century is not one of life-expectancy but e xpect a tion of life and i t is here that the nega ti ve

and partial view prompted

by medicalisation

is most open to criticis m .

one rooted in an undue the very nature of which is

The medical mod el of disability is em p h as is on clinical d i agnosis ,

•

I DEOLOG ICAL CONSTR UCTION OF DISAB I L ITY

49

destined to lead to a partial and i n hi bi ting view of the d i sa bled ind i vi d ua l . In o rder to understand d isa b i l i ty as an experience, as a lived thing, we need m uch more than the medical 'facts', however necessary these are in d e term in ing medication. The problem comes when they determine not only the form of trea t m en t ( if t reat ment is a ppropri ate ) , but also the form of life for the person who hap pens to be disabled. ( B rise n den , 1 986, p. 1 73) The medicalisation of everyday life a nd of society is th us a fac t for the vast majority of the current population, disabled peop l e a mong t hem . How th is genera l p he no meno n came about now needs to be considered along with specific explanations of how the proc ess occurred in respect of d isa b ili ty . To facil ita te this, the historical framework developed by Abrams ( 1982) a nd discussed in the previous cha p ter, will be returned to, incorporating enlig h tenmen t , necessity, action a nd power theories of welfare.

T H EO R I ES OF MEDICALISATION

The enlightenment t heory of medicalisation s u ggests that medical­ isation is a consequence of both the rise of science and the progress of humanitarian ideas. Within this explanation , medicalisation is seen as largely beneficial and progresive, providing treatment to the ill rather than ph y sica l pu nis hme n t for sinners , or deprivation of liberty for th e criminal. While this may appear to be progressive, treatment may no t always be ex perie nced in this li gh t and th e consequences of medical la bels may be negative and profound . This poin t has been made wi th rega rd to e p i lepsy : In

the

initial decades of this

e p i l e p sy . As

cen t ury

much was learned about

a result ph ysi cia ns ga i ned much be t te r control of the epi lep tic p roces (which som e ti m es results in se izures ) . The d es i re to control the dise ase , _howeve r, seems to go h and in hand wi th the desire to con t ro l the diseased person . Thus, epileptics were both he lped and harmed ; they we re benefitted insofa r as their illness was more accurately d i agnosed and better treated ; t h ey were i nj u red insofar as they, as persons , were st igm a tised and socially segregated . . . It has taken decades of work, much of it still

50

TH E POLITICS OF DISABLEMENT

unfinished, to u ndo some of the oppressive social e ffec ts of

a n d to restore t h e epileptic to the before his disease became so wel l under­ stood . Parad oxi cal ly then, w h at is good for e pi lepsy may not be good for the e p il epti c (Szasz, 1 96, p. 3)

'medical progress ' in epi lepsy,

soc i a l status he enjoy ed

.

This leads on to the n ecess i ty theory of medicalisation, which

stresses the need to impose ord e r in the new i ndus tri al society and

describes the way in which medicine became the main agent in this process of social control ( Zola, 1 972). This expl an a ti on contains two strands; one seein g medicine as an independent social and ideo­ logical force and the other seeing medicine as a n agent of th e capitalist r u li n g class and a contributor to the 'legi timation of ca pi t al i s m (Navarro, 1 976) . A l l yi ng medicalisation and social con ­ trol its d rawbacks, for it h as t he po ten ti a l to produce a sys te m of '

s ocia l con trol ' unlimited i n i ts po t en ti al a ppl i cat i on s ( Ki ttrie, 1 97 1 , '

p . 362) ; and a p rofessi on an d society

which are so concerned wi t h p h ys i c al and functional well bei n g as

to sacri fice civil l i berty and moral i n tegrity must inevitably p ress

for a s cie n tifi c environment similar to that provid ed for laying

h en s on progressive chicken farms

-

hens who prod uce eggs

industriou s ly and have no disease or oth e r cares. (Freidson, 1 970,

p.

356)

The action theory of medicalisation sees this process as the

struggle between various groups to i mpose their own specific set of

me an i ngs upon par t i c ul a r socia l ph enome n a

.

Within this frame­

wor k the question of wh y medical labels stick to some groups or ,

cond ition s and not others is always an empirical question . Hence ca m pai gns to medicalise some conditions such as alcoholism and hyperki nesis and to demedicalise o the rs such as homosexuality are always consequent upon th e struggle between competing

grou ps The fact that throughout the twentieth century, far more .

soci al phe no m en a h av e bee n med i cali sed tha n demedical ised is

expl ai n ed by reference to th e notion of ' medical imperialism', the

medical profes ion winnin g battles both to d efin e and t re a t these p henom e n a

.

does not explain is the success of the medical profes i on in ach ievi ng this dominant posi tion . Th i s req ui res a further dimension, What it

IDEOLOGICAL CONSTRUCTION OF DISABI LITY

51

su p plied by the power th eory of medicalisation. There are at least three ve rsions of this; the first suggests that this d ominan ce has been

achieved because of the s u periori ty of medical kn ow led ge ( based

on

sci ence ) ove r ot h er fonn s of k nowl edge ; the second suggests that

power was

achieved because the medica) professi on was

well­

organised and able to gain dom i nant positions wi th i n the new bureaucracies arisin g as part of the ra tionalis i ng of society; the thi rd emphasises

the interconnections between the medical profess ion and ruling clas .

the capi talist

These explanations, taken separa tely , offer only a partial account

of the medicaJisation p roces for i t

was

certainly shaped by the

development of scientific and medical kn owl ed ge, by the need for

more effective and fa r- reac hi ng fonns of social control , by the

struggles

between competing groups and by- t he structure and

rates al

these elements; which reconce ptuali ses medica) interven­

location of power . What is needed is an expl ana t ion which incorpo­

tion as social control, medica) knowledge

as ideology

and which

links the two. But before attem pti n g to provide this kind of

ex plan a tion, i t needs to be no ted that few writers have a tt em pted to ex plain this issue of the medicali$ltion of d isabi l i ty .

While there is an ever-burgeoni ng literature on the med i cal isa tion of social problems generally, there ha ve been few attempts to discuss

the

medicalisation of disability, ei ther in historical or curren t

context. Where disability is discussed, its location within th e medical

model goes unchallenged

and explanations for medi call y­

dominated service p rovision rarely go beyond the enl igh te n m en t

theory of welfare.

need

There

are two exce ptions to this, however,

which

to be discussed.

The first of these is con tai ned in the work of Stone ( 1 985) who casts doctors in the role o( 'reluctant imperialists' . Her central thesis is that the disa bi l i ty category perfonns the fun ction of sorting people into the work - based �r needs- based syst em s, and consequently, som e allocation methotl need to be d eveloped i n o rd e r to carry out this tas k . This w as doqe by making disability a clinical concept and hence, ass igning the jole of allocation to the medical profession . ' However, disability certification was not a task the profes i on wan ted to assu me . Most physicians believed that medical scien c e was not capable of assessi n g disability, and that adoption of the certifying

TH E POLITICS OF DISABLEMENT

52

role would

only create enormous tensions

between doctors

and

t h ei r patients . (Stone, 1 985, p. 1 1 2)

However, once i t bec a m e obvious that medical ce rt i fi ca t ion was goi ng to be t h e mechanism of allocation, the profession took the role on, fea r i n g that if they did no t, a government-created corps of physicians might grow up to rival their own ind epend ent profess io n . While it may be t ru e that certain key members of t h e American Medical Association took this view at one time spec i fi call y in respect of d is abi l i ty , the m edi ca l profession as a w hol e has not ben reluctantly i m perial is t in i ndu s t rial societies, notably with regard to other areas such as madnes. Hence the medicalisatio� of d is a bi l i t y was as m uc h a product of the structural pos i t ion of the medical p rofession in ca p i tal ist society as it was the attitudes and beliefs of partic ul ar groups of d oc tors . Just such a stru c tura l explanation has ben provided by Finkel­ s te in ( 1 980) who lin k s medicalisation with t he rise of t h e institution and the segregation of disabled people and w ho argues that this s eg reg a tio n fac il i t a ted t h e d evelop me n t of a w hol e range of s peci a l ­ ist, profess ion a l worker s . hos pital environment faci li tated the deve lop m ent of nurses, physiotherapists, occu pation al th e rapis ts, soc i a l worke rs ( a l m o n e rs ) , cou nsellors, etc., and the alms houses, as yl u m s , charitable homes ensured the s uccess of t he move towards segre­ ga tio n . 'flu development of sucussfol medical practices in hospitals Thus the

ensured greater numbers of people with physical impainnmts surviv­ ing and must have strengthened the connection between disabled people and institution� as well as facilitating the medical dominance in the field. ( My emphasis; Finkel s te in , 1 980, p. 1 0)

But seei ng medicalisation ( m ed ical dominance in Finkelstein's te rm s) arising from th e establishment and success of hos pi tal - based

medicine is only

hospital-based m ed ici ne the population and to d istinguish be twe en workers and non-workers within th e new capi t a lis t social order. Hence the medicalisation of d isa bility occur­ red h is torica ll y as part of this wid er social process, and the strategic position th a t the med ica l profession was able to ac h ieve for itse lf part of the s tory, for t his

i tself arose out of the need to cl ass ify and control

under capi talism.

IDEOLOGICA L CONSTRUCTION

OF

DISAB I L ITY

53

Part of the reason for this medicalisation generally was the success of the germ-theory approach to treating certain conditions, but the twentieth century has seen some fundamental ch anges in

the

patterns of disease and disability. Changing patterns of disease and societal response to these new problems has aggrava ted the m ed ic al care crisis a nd underlined the growin g i mportance of the disability problem . The heal th

problems apparent today have few q uick and inex pe n s i ve solu­ tions.

( Ai brech t and Levy, 1 984, p. 49)

Medical interventions based upon germ theory are no longer succesful with the chronic and degenerative diseases which are coming to dominate morbidity rates in modem, industrial societies. There are no cures, and maintenance rather th an treatment has come to play a major part in medical intervention . This raises th e q uestion as to why, given this changing pattern and the fact that many disabling conditions no longer respond to medical treatments ( i .e. the cure) , does the medical profession continue to dominate the sphere of d isability? A maj o r factor,

undoubtedly, is that the medical profession has expanded the area of i ts activity, to rehabilitation as well as treatment, as the pattern of diseases shifted from acute to chronic. As d e ma nd for rehabilitation services increased and insurance

benefits e xpand ed,

there

was an

incentive for physicians to enter

the rehabilitative field . Under the aegis

of designing comprehen­

sive medical rehabilitation programs, hospitals, and p hysici a ns began to incorporate rehabilitation services into the medical model . Definitions of disabling conditions and appropriate treat­

ments were expanded to include medical intervention and physi­ cian control .

(Ai brech t and Levy, 1 98 1 , p. 22)

The power of the medical profession and its strategic structural posi t ion cannot mask the defects in the medicalisation of rehabilita­ tion any more than they "can m as k the defects in the medicalisation of treatment . These defects are well-known : th e physicalist nature o f i ts pro­ grammes to the neglect of other pe rsonal and social factors ( Oliver et

al., 1 988); the difficul ties

in measuring success or failure and hence

THE POLITICS OF DISABLE M ENT

the

concen tration on e m ploy men t status

as

a measure of su ccess

( Aibrecht and Levy, 1 984) ; and the fa i l u re to involve disabled people

m eaningfu l l y in

the whole rehabili tation process ( Finkelstein , 1 988 ) . Even the econ o m i c rationality underpinning the rehabili ta tion in­ d u s tr y is being called i n to q uestion; originally developed to turn (or return) people into produ c tive and socia l ly useful human beings, their cost-effectiveness is increasingly being caled in to qu es tion : Disability progr a m s are considered to be very ex pe nsive and rapi d ly becoming more so, and there is conce rn whether resources are being efficientJy allocated . ( E rlange r and Roth, 1 985, p. 3 1 9)

CORE AND PERI PHERAL I DEOLOGI ES Des pite

these

criticisms and questions, the medical

and

rehabilita­

tion enterprises rem a in two of the most important of the

h u m an service industries and this is closely connected with the way both practices are linked to social control and their theories fit with the ideology of cap i tali sm and the cons tructi on of the able-bodied individual. Thus, for exam ple , The

aim of returning the individual to norm al i ty is the central the whole rehabilitation machine is cons tructed . I f, as happened to me fol lowi ng my spinal injury, the foundation stone upon w h i ch

disability cannot be cured, normative assumptions are not aban­ so th a t they not tbe treatment phase searching for a cure but also totaly colour the helper's perception of the rest of that perso n ' s

doned . On the contrary, they are re-formulated only dominate

life . The rehabilitation aim now becomes to assist the individual

as ' normal as possible'. was endless soul -destroyi ng hours a t Stoke Mandeville Hospital trying to approximate to able-bodied stan­ to be

The result, for me,

dards by 'walking' with calipers and crutches . . . Rehabilitation

philosophy em phas ises physical normality and, with this, the aiJow the individual to approxi mate as

a t tain ment of s ki ll s that

closely

as

pos i ble to able-bodied behaviour (e.g. only using a

a last resort, rather than seeing it as a disabled mobility aid like a pair of shoes is an able-bodied person's mobility aid ) . ( Finkelstein, 1 988, pp. 4-5)

wheelchair as

peoples'

55

I DEOLOGICAL CONSTRUCTION OF DI SABI LITY

This ideology of able-bodied normality underpins the professional approach to t he issue of d is a bil i ty from pre- bi rth until death . Th us, the Abortion Act ( 1 967) makes termination posi ble if ' there is a substantial risk that if the child were born it would suffer from such

physical or mental abnormalities as to be seriously ha ndi ca p ped ' .

N o strict criteria are laid down t o specify a bn orma li ty , nor is a definition of seriousl y handicapped provided , so the ter minat ion decision is left in the

h and s

of two doctors. Given the earlier

discussion of the di ffic ul t i es of d efin i ng d isabi l i ty and h an d ica p , this

d ecis ion will ultimately be based upon personal judgements of indivi­ d uals ,

who, whatever their training, are not i mm u ne from the fe t ters

of the id eology of the able-bodied and able-m inded individual . It should be made dear that this is not an attempt to engage in the 'abortion debate' but to illu st ra te the similarities in the id eo logi es of profes i ona l practice

in o therwise disparate a reas . has implications for disabled

u nd e rpi n ning abortion

The

genera l consensus is

that

if

a

This ideology people:

disabled person ad mits

that

eugen i c abortion is justifiable, he is t here by undermining t h e value of his own life. (Graham Mon teith,

1 987,

p.

38)

and for society: if able-bodied soc i ety were to accept t hat those are equal human bei n gs

with rights,

with

disabili ties

they would also have to

a ban don the notion that screening and aborti on are ben e fi ts to

society, an d that the be tt e r for all

This

earlier a handicapped person concern ed . (Davis, 1 987, p. 287)

is ki l l ed off the

ideo l ogy is not o n l y relevant t o life-and-death issues but to

other areas as well. The current po p ula ri ty of 'conductive education '

is a product of this i deology of the able-bod ied individual , for its aim is to teach chi ldren with cerebral palsy to walk, talk and engage in

all other activi ties in as near n ormal a way as poss ible . No

consideration

is given to the iss ue

of the

to the idea that the en v ironm e n t could

ideology of ' no rm a li ty ' nor

be changed rather than the

individual.

The object of Conductive Ed ucation is not to accommod a t e the severe dysfunctional p a tients in an insti tute, or to send

them

to

a

THE POLITICS OF DISABLEM ENT

56

a basic task to render possi bl e a normal educa t ion , travel lin g in the streets, st:lf-supporting and work. In order to bri ng about an equ i l i bri u m between child and environment, we do not c ha n ge the e nv i ron men t , but the adap ta­ tio n of the child's constitution. (Hari, 1 968, q uo ted in Co tta m and Sutton, 1 985, pp. 4 1-2)

s peci al school , but to accom pl is h

And scan t regard is paid to the costs i n vol ved in te r m s of pai n , coercion, loss of childhood, d i s rupti on of family li fe, acceptance of al tern a tive ways of doi ng t h i ngs and so on. Agai n this is not a consideration of the pros and cons of conducti ve education but a poin ter to the ideological simi l ari ties that it has with other practices. The search for the cure of a variety of disabl i ng cond i ti on s such as multi ple scleros is muscular dys t rop hy and s pi nal injury is also supported by this i d eol ogy as is mu ch of the practice of geri a t ric medicine aimed at restoring the functional ca paci ti es of old people rather than p rovid ing the support of services which allow them to live i n dignity with their d ecl i ni n g ph ys ical capabilities. Lo n g ago, the unitary idea of able-bodied and able-mindedness was mocked : ,

,

in an i m po r ta n t senst: there is on ly one com plete u n bl us h i n g

male America: a young, married, white, hete rosex ual Protestant fa th e r of college education, fully empl oyed of good co m plexi o n weight and height, and a rece n t record in sports . The general i den ti ty values of a society may be fully en tren c hed nowhere, and yet they can cast some kind of shadow on the en cou n ters en co u ntered eve rywh ere in d ail y l ivi n g. (Gotfman, 1 963, pp. 1 28-9) in

,

,

.

.

. ·

But t hese identity values can be s t ruct u rall y located and are fully

of individualism and they cast a of disabled people t hrough th ei r i ncorpora tion into the peripheral ideol ogies of able-bod ied ness and able­ mindednes and the medicalisation of disa bi l i ty Shadows are cast on the lives of disabled people not s im pl y because of the existence of these ideologies bu t because of the disc u rs ive practices (Foucault, 1 972) which accom pany them . H ence, if w e re t u rn t o the issue of t he cure for disabling condi t ions , the discu rsive pract ices s ur rou nd i ng th is issue us uall y focus on walking. I gn ori n g the strictures of Fin kel s tei n ( 1 98) on w alk in g, Dr Hari sugges ts entrenched in t h e core ideology

shadow on the lives

.

I DEOLOG ICAL CONSTRUCTION OF DISAB I LI TY

57

ped agogue is to promote the discovery of which en a bl e the s pi n al cord injury pa ti ent to learn how to walk, etc. and e n te r eve ryd ay life wi tho ut any s pecial mechanism.

The d u ty o f th e cond it ions

But further, 'In order to make a s pin al cord injury patient walk, i nd iv id ual to do so. ( H ari , 1 975, quoted in Cottam and Sutton, 1 985, pp. 1 6 1 -2) Thus the implica­ tion is clear: those who re mai n unable to walk, lack the will so to do. Similarly, in respect of ageing, m uch medical intervention is geared towards returning the old person to as near normality as posi ble . U su a lly the s pok en ass u mpt io n s behind this n o rma li ty are t h e fu nctional capacities and capa bil i ties of twenty-five-year-olds and it is t hese to w hi ch the old person must aspire . Further t each in g must restore the will of the

The bio-medical theories not only individualise and medicalise old age, but al so they overlok t h e rel a ti on ship between socio-economic status, the economy a nd heal th. (Estes et al. , 1 982, p. 1 53)

has fu r th er consequences in that it is becom in g increasingly less possible

This

to debate the broad span of social an d allied pol ici es necessary to which exist in this political and cultural climate which id en tifies older people as patients and soci al casualties. ( M id wi n t er , 1 987, p. 1 234) ch a n ge the atti t ude s

to discuss s t u t tering as d isab il ity that t hese discursive practices direct our attention to the s tu tte rer ' s mouth as the source of the proble m of stu t teri n g . He goes on to suggest there are, however, other c h oices on whi c h we cou ld focus our atten tion . Shap iro ( 1 98 1 ) u ses this idea

and s uggests

In the case

of the s t u t te ring child, for example, one might well and deal with the parent-child relationship, for th e parents might be pu t ti ng pressure on the child that, if removed , might bring an end to s t u tteri n g . Or, going further out in the causal sequence, the parents might be under pressure, given such sit u a tions as a s t res sfu l work setting or a s tressfu l mari tal relationship. ( Shapi ro, 1 98 1 , pp. 92-3) i gnore

the

mou t h

58

THE POLITICS OF DISABLEM ENT

He goes on to suggest that we could move further and fu rther away from the stutterer's mouth until we focused on the 'structure of the econom y as a whole'. But his analysis itself remains locked into a discursive practice which sees stuttering as s tress- rel ated . An alternative might be to see stuttering as merely a natural phenomenon a nd one of the myriad ways in which communication takes place, which might also include Oxbridge Engl ish , Espe ra n to, sign language, Braille, Makaton and so on . Thus the problem of s t u ttering can therefore be seen as the res u l t of social expectations about appropriate (and i na p prop riate ) ways of com m unicating rather than the product of stress among individuals or families. S hapiro, of course, recognises that these discursive practices are not free- float ing but grounded in particula r concrete p rac ti ces and forms of socia l relations . And

The way that we speak about phenomena like stuttering is condi tioned by the discourses within which such p henome na are embedded . Speech p a thology , for example, is not a phenomenon lying around wai ti ng to be d i scovered . It is an id eol �i cal commitment that represents various modes of responsib il i ty and control. The fact that ' speech problems' are regarded as such is thus the function of a latent ideology, one that is structurally rep resen ted by the vocations of persons such as speech therapists. We therefore look i n to the mouths of stutterers because we regard it as relatively more legi ti ma te to load the responsibility for stuttering onto the stutterer than el sewhere . (Shapiro, 1 98 1 , p.

93)

Hence d isability is s t ruct u ra ll y represented by the vocations of and the para-medical professions, and we load res pons ibi l i ty for the restrictions that disabled people experi ence on to disabled people t h e mse lves , who are restricted because of the fu n ction al or psychologi cal l i m i ta t ions im posed by their individual impairments rather than by t he social restrictions imposed by soci e ty . To sum up, the d isabl ed individual is an ideological co ns t ru ct io n related to the core ideology of individualism and the peripheral ideologies related to medicalisation a nd normality. And the indi­ vidual experience of d isabi l i ty is structured by the discursive practices which stem from these ideologies. doctors

IDEOLOGICAL CONSTRUCTION OF DISABILITY

59

Lukes, in his discussion of individualism in general, comes

to

conclusions of relevance to the ideological construction of the disabled individual. He recognises that there have ben indispensible gains from the rise of individualism; it was central to the breaking down of tradi tional hierarchies and privileges and in establishing the legal rights of individuals. Further, he suggests that These are crucial and indispensible gains but, if we are to take equality and liberty seriously, they must be transcended. And that

can only be achieved on the basis of a view of un-abstracud individuo.ls in their C()ncrete, soci4l speci.ficity, who in virtue of being

persons, all

require

to be treaud and to live in

a social order which

treats them as possessing dignity, as capable of exercising increasing their autonomy, of engaging in valued activities

private

and of developing their several pokntialities. emphasis; Lukes, 197 3 , p. 1 5 3 ) space,

and a

( My

Likewise, this is not to deny the real and indispensible gains brought about by the individualisation and medicalisation of disa­ bility, but these gains must also be transcended and the italicised portion of the above quotation · would not

be

out of place in any

charter on disability. Before considering the implications of this view of no-abstracted individuals for disability policy, it is necessary to consider the disabled i ndividual who is located within this ideo­ logical construction, and that will be discussed in the following chapter.

5

The Structuring of Disabled Identities The personal response o f individuals t o thei r disabilities cannot be u nderstood me re l y as a reaction to trauma or t rag edy but h ave to be located within a framework which takes account of both h is tory and ideology . Thus

the individ uaJ must cen t re upon relations of which the person is constituted : the performance of labour and the incorporation of ideology . ( Leonard, 1 984, p. 1 80) a m a t e r iaJis t understanding of

two aspects of the

e nsem

The effects of changes in

ble of social

the la bour market and their implications in Chapter 3, and

fo r sociaJ relations h ave al ready been discussed

the incorporation of the ideology of individ ualism has been des­ cribed in Ch a p te r 4; the effects that these factors have on identity fo r m a tion for disabled people will be discussed below .

There is no doubt tha t the historicaJ process has a significan t

influence on id e n ti ty formation in gen e r al , for

there is a considerable consensus about the extent to which

the seen as a matter of a s pecificaJiy h istorica l en try i n to some specific historical figuration - an interweaving of pe rsonal and col lec ti ve histories. In this dou ble sense iden tity formation en ma s se is seen as a historicaJly located historical seq uence. ( Abrams, 1 982, p. 24 1 ) process must be

This 'historically l oca ted historicaJ sequen ce i m plies that there is a cultural context to identi ty formation , and as far as disabi l i ty is concerned raises the question as to whether there is a cul ture of '

disabi lity .

60

61

TH E STRUCTU R I NG OF DISABLED I DENTITIES

C U LTU RE AND DISAB I LITY

Earlier it was suggested that p ri or to the rise of capitalism, disabled people were integrated within their communities a nd had a legiti­ mated number of social (and economic) roles. Thei r exclusion as a conseq uence of the rise of capitalism had an influence on this cultural context as an ana l ys is of the prese nta t ion of d isa bil i ty in the Victorian novel suggests. Not until the rise of senti men talism and the obsession with the ex cl ud ed and the marginal, which climaxes in the reign of Victoria, did th e blind, the deaf and the halt become major characters in large numbers of boks written by authors and intended for readers wh o , thinking of themselves as non­ h an d icapped , are able to regard the handicapped as essen tially alien, absolute others. In such a context, fellow human beings with drastically impaired percep t ion, manipulation and ambula­ tion tend, of course, to be s t ereotyped , either negatively or positively; but in any case rendered as something more or less than human . (Fiedler, 1 98 1 ) Throughout the twentieth century, whether it be in the novel, newspaper stories or television and films, disabled peop l e continue to be portrayed as more than or less than human, rarely as ordinary people doing ordinary th i n gs . W�thout a full analysis of images of disability it is not possible to do other than present exam p les of these images. Sir Clifford, in Ltuly Cllattnlefs Lo'Dtr, is an obvious example of the p resen tation of disabled people as less than human. The story of Sir Douglas Bader as portrayed in Reach For The Sky is an example of a disabled person being por t rayed as more than human . These portrayals see disabled people either as pathetic victims of some appalling tragedy or as superheroes struggl i ng to overcome a tremen dous burden. B u t the i mage of disabled people as

mo re than human does not always emphasise recent anal ysi s of children's fi c ti on has show n

goodness, for

as

a

the disabled adult has often been portrayed as an embittered and menacing character who , like Long Jo h n Silver, seks to manipu­ late children for his own ends, or as a man bearing a grudge against society, who uses his d i s torted body or artificial l i m bs in a

1

62

THE

POLITICS

OF

sinister and aggressive fashion, p . 1 22)

DISABLEMENT

e.g. Captain Hook. (Quicke, 1 985

I n recent years there has been a growing r ecogn i tion of the fact that these dominant cul tural i m ages not onl y violate the actual ex perie n ce of disability, but also are posi tivel y un hel pful in provid­ ing role models for disabled people and in breaking down prejudice amongst the rest of the popu l a tion Thus there ha ve been attempts, particularly by the mass media, to break down some of these images through the development of specialist programmes, drama and documentaries, but there is still a long way to go; at present, the best that can be said is that dominant images are being challenged but they are far from being replaced by more authentic ones. The disability arts movement is in creas in g ly becom i n g the focus of the moun ting of these challenges but it has, itself, had to struggle to free itself from the domination of able-bodied professionals who tended to s tress arts as therapy ( Lord, 1 98 1 ) rather than arts as cultural i magery. That, too, is changing, for as disabled people s t ruggle to take control over their own lives, .

The same process has been happening in the arts. Disabled people who were active in the arts are in creas i n gly meeting wi th those who were active in what might be called, the poli tics of disability, and together we are trying to develop a new way of looking at, and presenting, di s a b i li ty 'as a way of life'. ( Finkelstein, 1 987, p. I )

The point about this brief discussion of c ul tura l images has been to show how they s upport the ideology of individualism, in present­ i n g the disabled in d i vid ual as les than or more than human . There has been little attempt to present the collective experience of d isa b i li ty cu l tu rally and hence the process of identity formation for disabled individuals has usually been constrained by images of super heroes or pathetic victims. But this proces of id e n t i ty forma­ tion does not merel y take place within the context of what Mead ( 1 934) m ight have called ' the generalised other' but of 'significan t others' as well. Crucial si gn ificant others in the lives of disabled p eop le are those v as t array of p rofess ion als who either write th ings about or do things to disabled people. Their world-views of disa­ bility, heavily influenced by the medical profession, also individualise ,

THE STRUCTU RING

than human is the effects of this on

disability and reinforce the les disabled prople. It

formation

which

will next

63

OF DISABLED I DENTITI ES

cul tural image of

d i sa bi l ity identity

be considered.

ADJUSTM ENT - A PSYCHOLOG ICAL APPROACH In G ram sc i s terms these significant others are 'intellectuals', gives this term a broad m ean i ng '

t h ou gh he

By

.

'intellectuals' m u s t be understood not those

s trata com monly

described by this term, bu t in gen e ral the enti re social s t ra t u m which exercises whether in

an the fiel d

organi sa tional function in

of production,

of political administration.

or in

(Gramsci,

the wide sense or in that

-

that of cul ture,

p. 97)

1 97 1 ,

I n terms of disability, these i�tellectuals are precisely that group of

people who do things to or I

about

disabled

people and

both their theories and their practice are constrained by the ideology

of ind ivid ualis m and by cu l tu ra l images of disabled peop le

as

less

The concept which links these strands is that of adj us tmen t .

The

than human.

argument suggests that

wh e n

something happens

to the mind

become

as

to an individual's

wel. Thus,

again, in order to fOrm a

disabled

in

order

to

id entity t!te ,

d isabled individual must undergo medical treatment and phy sica l

tlie previous ch apter ) as well as t�!_Yrocess of psychological adjustment or com i ng to terms with diSability. Further, in orde r to adjust may need to gri eve and mourn for hi s lost ab i lity and pass th rou gh a series of stages before adjus t me nt is complete. -

However, the conceptual framework provided by the adjust m e n t

has

been severely c riti cised on theoretical grounds ( Finkelstein,

1 980; Oliver ,

as well as on the grounds that it does not accord of d isa bi lity (Sutherland , 1 98 1 ) , and al tern a tive frameworks such as social adj ust m ent (Oiiver et al., 1 988) and social oppression (U PIAS, 1 976) have been developed. But it i s not j ust disabled people who have p rovided theoretical and experiential cri ti cisms of this framework, but researchers also h ave found it difcult to provide empirical evidence. 1 98 1 )

with t h e actual ex perie�ce

64

TH E POLITICS OF D ISABLEMENT

Our view of the available literature s ugges ts that a great deal of va ria bi l i ty exists in individual reac tion s to ne ga t ive life even ts , bo th within a pa rtic ul ar life c ri s is and across different crises. We have fo u n d little reliable evidence to indicate that people go t h ro ugh stages of emotion a l responses followi ng an undesirable life event. We have a l so reviewed a substantial body of ev id en ce suggesting that a large min ori ty of vi c tim s of aversive l ife e v en ts ex peri en ce d istress or d iso rgan isa tion lon g after recovery might be expected . Current theoretical models of reac t i ons to a ve rs iv e outcomes cannot account for the va ri e ty of responses tha t a ppear (Silver and Wortman , 1 980, p. 309) .

The crucial issue t h i s raises is why does the conce p t of adj us tment exert su ch a powerful i n fl u en ce over w h a t professionals ( i nte l l ec tual s ) actually say and do about disability? I t is clea r that this i nfl u en ce cannot be acco u n ted for in terms of theoretical coherence or em p irical grounding, for as one disabled sociol ogis t has pointed upon his own ex per i enc e of disability , out in

­

I realised how me age r are our attempts to write a nd do research• adj u s t m e n t and ad a p ta t i o n It would be nice if, at some poin t , growing up e nd s and maturi ty begi ns, or if one could say that successful adj u stme nt and ad ap tation to a parti c u la r d i ffi cu l ty has been a c h i eved For most pro ble ms , or perhaps mos t basic life issues, there is no si ngle time for su c h a resolu tion to occur. about

.

.

The

P{O b l e ms

must be

faced,

evaluated, re-defined , and

reada pted to, agai n and again and again . And I knew now that this a pplied to m ysel f No m a t te r how m uch I was admired by others or by mys � lf, there was s ti l l much more I had to face. ' My Polio' and ' My Accident' were not j ust my past; th ey were part of my p rese n t and my fu t u re ( Zola, 1 982, p . 84) .

.

H e n c e, p rofess io n a ls are cle a rl y influenced by cu l t u ra l images and ideo log i cal constructions of disability as an i n di vi d ual medical and tragi c problem . The issue of adjustment, therefore, became the focus for professional intervention and re i n fo rced these very images and constructions by roo ti n g t h e m i n p rac ti ce I n rece n t years a l i n k has emerged between these professional constructions of d is a bi l i t y as adj us t me n t and cultural i mages of d isabled peopl e . Hence, ,

.

THE STRUCTUR l NG

OF

DlSABLED l D ENTlTI ES

65

The most preva len t

image in films and es peci all y in television the past several decades has been the maladj u sted disabled person. These s tories i n volve c h a rac te rs w i th phys i ca l or sensory, ra the r than mental ha nd i ca ps . The plots follow a consistent pattern: The disabled central characters are bitter an d se l f- p i t y in g because, how eve r long they have ben d isabled , they have never adjusted to their h a nd i ca ps , and never accepted t h e ms elves as they are. ( Longmore, 1 987, p. 70) d u ring

is disabled peo pl e who have the p robl e m . Th ey treat th eir and friends badly until long-s uffering enough , they confront these disabled people giving th e m 'an emotional slap in the face ' . Tbe disabled person then realises that it is him o r her who has the problem, accepts the rebuke and becomes a we l l -adj u s ted adult. The pro blems with these c u l tu ral images, as wi th p rofess ion a l constructions, is that they ignore issues of soc i a l prej ud ice and institutional discrimination . The no n -d is a b led have little trouble in accepting disabled people and i n deed u nde rs t a nd t he prob l ems of disability better than the disabled people themselves. Thus, ultimately these im ages pl ace ' respon si bil i ty for any pro b l e ms squarely a nd almost exclusively on the d i s a bled individ ual' ( Longmore, 1 98 7 , p. 7 1 )

Thus, it families

STIGMA - A SOC IAL

PSYCHOLOG ICAL

APPROAC H

A si gn ifica n t advance on the purely psychological conceptions of adj ustme n t is the idea of s t igm a , originally advanced in th e work of Goffman ( 1 963) . He poin te d out that stigmas were originally i n fli cted , through marking or branding, on certain individ uals who had transgresed the norms or values of a pa rti c ul a r society. I n modern societies s tig m a s emerged t h rough the proceses o f social interaction w he re by individuals were marked out or set as i d e because of some attribute t h ey posssed or because something d isc redi t a bl e was k nown about the m . S t igm a t i sed iden ti ties were form ed throu gh i nte rperson a l in teractions rather t h an psychological reactions to events. Thus while s t igm a may have ex i s ted in all societies, i n ancient on es i t was inflicted because of some transgres­ sion o r othe r ; in m ode m societies, the s tigma i tself was the transgres­ sion. In both kinds of soc i eti es , stigma i mplid mo ra l op pro b rium or blameworthi ness.

66

THE

POLITICS OF DISABLEM ENT

Pa rt ly because of Goffman's pos ition in social science, and partly

because of the originali ty of his i nsights, stigma b ecame the domi­

nant concep tual framework for developi ng an understand i ng of the ex perience of disability. No one men tioned tha t the e m pi rical evidence for his insigh ts was derived from secondary sources heavily dominated by psychological models ( Barker et al. , 1 953; Wright, 1 960) an d that much of this data was gathered i n one country in one specific period . And onl y Finkelstein ( 1 980) pointed out that while Goffman's work was concerned with social contexts , interactions and processes, stigma was ultimately reducible to th e indi vid ual ; there could be no stigmatising process unless the individual posses­ sed a s t igm a in the first place. There were some attempts at i m plici t criticism wh e n Goffman's framework didn't quite match empirical rulity, and it therefore needed to be extended and developed to u n d e rstand the stigma of h omosexu a l ity ( H um ph reys , 1 972) or lep rosy (Gussow and Tracey, ' 1 968) : he d ea l s mainly with single individuals in brief encounters

with

normals, usually in 'unfocussed gatherings'. He seems less con-• cerned with pati e nts ' efforts towards destigmatisation in more permanent groupings, especially in social settings where they Jive together in more or les continuous interaction, where

they are

a ble to develop their own su bcu l ture , norms and id eology , and

wh ere they possess

some measure of control over penetrating

dissona11t and d iscredi ti ng views from without. (Gussow and Tracy,

1 968, p. 3 1 6)

appropriate meta ph or for descri bing d isabled people in social interactions, i t i s unable t o explain why this stigmatisation occu rs o r to incorporate collective rather than personal respo n se s to s tig m a . A rece n t attempt has bee n made to rescue stigma from its i ndividualistic, in te ractionist and relativist position ( Ainley et al., 1 986) almost to the point of providing a sociological account. Th us , while stigma 'may be an w ha t ha ppens to individual

The overall structure of soci ety is determined not only by its cultural attri b utes such as norms, values and religious beliefs but

also by the nature of its social orga nisa tion s and its poli tical

economic structures.

and

These factors contribute significantly to the

67

THE STRUCTUR I NG OF DISABLED I DENTITI ES

way

i n which the concept of stigma i s used a nd and Arnold, 1 986 p. 44)

how it is

viewed in

society. (Becker

to

Unfortunately, whi l e this is acknowledged, individual adaptation .

s tig m a is still red uced

Changing one ' s appearance is on e of many ways to cope with stigma. For most persons with visible stigmas, however, s u c h a ch a nge is no t posi ble. For these persons - ethnic minorities and those with physical disabilities - and for all the persons with 'hidden stigmas', coping with stigma is a process of individual ad ap ta tion . (Beclter and A mold , 1 986, pp. 49-50) The idea that individuals m igh t confront, rej ect, o r ignore , as a del ibera te strategy, their stigmas rather than cope with them, is not even considered . Stigma is all emb ra c i n g but s til l an individual p rob l em. And even w h e n co nsid e ri ng the pol i t ical move men t of d i sabled people , it is ana l ysed in ter ms of destigmatisation and interactional proceses. almos t to tal ly isolated from th e general population, today more visible and often live in the m ai n st ream of American society . One purpose of t hi s social movement has ben to lok beyond the parti cu lars of specific disabilities to the commonalities experie nced by all di sa b led people and their expe ri en ce of stigma. Consequently, some of the stigma attached to p hysical l y disabled as a group has l ese n ed , and individual self-esteem has improved as wel l . (Becker an d Arnold, 1 986, p p . 54-5) At one ti me

disabled people are

seen as sy non y ­ the sel f-hel p movement; populist and the more explicitly poli ti cal aspects of the movement are ign ored . Within the bok, th e �nsideration of the issue of soci a l con trol offers the oppor t unity to provide a s tru c t u ral account of stigma but again this is not ta k en , for Thus the poli ti cal movement of disabled peop l e is mous with

Social

con trol involves

reactions to stigmas (or dev ian ce ) . Reac­

tions may occur for various reasons (e.g. fear,

vengeance ) ,

but

an

68

THE POLITICS OF DI SABLEMENT

im portant conseq uence is often the restriction or terminatio n of s ocia l relations. (Stafford and Scott, 1 986, p. 87) Stafford and Scott do not mean social relations in the sociological sense of the term, however, but i nterpersonal relations, as with

skinny children being excl uded from neighbourhood games of

basketball, and the avoidance of ugly people as dating partners. No people in segregated institutions

m e n tion of the exclusion of d isa b led

as part of the process of social control is even acknowledged . Thus, disabled people have not found stigma a helpful or useful con ce p t in developing and formulating their own collective experi­ ence

of disability as social restriction . To begin with, it has been of the shackles of the individualistic

u nable (so far) to throw

a pp roach to disability with its focus on the discredited and the discred i ta ble.

In addition, its focus on proces and interpersonal

interactions ignores the institutionalised practices ingrained with social relations ( i n the sociologi cal sense) . And fin a lly therefore, ,

have preferred to rein terpret the collective experiences in terms of s truc t ural notions of discrimination and oppression rather t ha n they

in terpersonal ones of s t igm a

and

s tigm a tisation

.

SOC I AL ADJUSTMENT - A SOC IOLOGICAL APPROAC H Thus,

neither

the

psy c h o logical

nor

the

social-psychological

approaches provides an adeq u ate account of the experience of disability at t e m pts

�nd, as

has already been mentioned, there have been

dev e lop alternative frameworks using the concepts of social adjustment and social oppresion . These attempt to locate the

to

experience of disability within a wider social context and to consider the wider social forces which structure the experien ce of disa b i lity

.

In a s tudy of the experience of spinal cord injury, the concept of social adj ustme n t was developed to facilitate an understanding of

the wide variet y of person al res ponses to sp inal injury : understanding

the consequences of SC I invol ves a com p le x

relations hip between the impaired indiv id ual

,

the socia l context

with i n which the impairment occurs and the meanings available

to i ndivid ua l s to enable them to make sense of what is happening. This is what we mean by social adj ustment: it is more than simp l y

THE STRUCTURING OF DISABLED I DENTIT I ES

69

the functional limitations tha� an individual has or the social restric­ tions encountered; it is a com p lex relationship between impairmen t, mea n i ng . (O live r et al. , 1 98, pp. 1 1 - 1 2)

social restrictions and

of spinal inj u ry, th ere fore , cannot be unde rs tood of p urely i ntern al psy chological or i n t erpe rsonal processes, but requires a whole range of other m a t erial fac tors suc h as hou s i ng , finance, emp loy men t , the bui l t environment and family circumstances to be taken into account. Further, all of these material factors can and will change over time, sometimes for the better and sometimes for the worse, hence giving the experience of disability a temporal d i m ens i on This framework does not need to present disabled people as more t h an or les than hu m an b u t ra t h er as ord i n ary people copi ng with extraord i nary circumstances'. While this is a s igni fi ca nt advance, the s tud y does concentrate on one type of im pai rm e nt and does not attempt to show h ow these material factors are rel a ted to

The

in

ex pe rie nce

term s

.

'

wider social forces.

The i dea th a t d i sa bi lity was a particular for m of social oppression first arti cu la ted by the U nion of the Physically I m pa i red

was

Segregat ion in 1 975; subsequently it was used by a grou p of people to an alyse t he i r own exp eri ences of disability (Sutherland , 1 98 1 ) ; and l a te r, incorporated within a materialist framework ( Leonard, 1 984) . H owev er , to a na lyse d i sa bi l i t y as oppression from an ex perie n ti al base is not itself enough, for Agai n st

d isa b l ed

To c l a i m that disa bled

people are oppressed involves . . . argu i ng a At an e mpi ri ca l level, it is to argue t h a t on significant dimensions disabled people can be regarded as a gro u p whose mem bers are in an inferior pos i ti on to other members of society beca use t h ey are disabled people. I t i s also to argue that these disadvan tages are dialectically re l a ted to an ideology or gro u p of id eolo gi es which justify and pe rpet u a te this s i t u a ti on Beyond t h is it is to m a ke the claim that such disadvantages and their s u ppor t ing ideologies are neither natural nor inevitable. Finally it involves the. identification of some be n efi ci a ry of this state of affairs. ( A b be rle y , 1 987, p. 7)

n um be r of other poi nts

.

.

As A b be rl e y h i m se lf ac k nowl edges there is p l en ty of e m p irica l evidence to suggest that disabled peo p l e are in a n inferior position, whether it be in terms of housing ( Bors a y , l 986a) , e mploy m en t ,

70

THE POLITICS OF DISABLEM ENT

( Lon sdale , 1 986), fi na nce (Townsend, 1 979), transport ( H oad , 1 986) or education ( A n d erson , 1 979) . Th a t these disadvantages are related to the core ideology of individualism and th e peripheral ideologies u nd e rpi n n i n g medicalisation and personal traged y theory was the argument presen ted i n th e previous c hap te r . C hap te r 2 p rovi d ed ex am pl es to show that disabled people are not treated as i n fe rior in all societies nor at all historical points, thus demons tra t­ ing that their supporting ideologies are nei ther natural nor i nevi t­ a ble . Fi n all y , the broad answer to the q ues ti on 'Who benefits?', is that ca p ital i s m itself ben efi ts in that disabled people may perform an econom ic function as pa r t of the reserve pol of labour and an ideologi cal function in being maintained in their position ofinferiority. Thus they serve as a warning to those unable or unwilling to wo rk ( Oiive r, 1 986) . I t is c l e a r from this that disability can be see n both o bjec tive l y and subjectively as a particular form of oppression. But again, as Abbe rl ey points out, this is not to suggest that a monolithic theory of opp ress io n , into which all o pp resed groups are fi t ted , can be developed . Disability is a par ti cul ar form of oppression, in that sexual and racial oppression are 'wholly ideological'; whereas• i m pai rm e n t is 'reaJ ' and 'forms a bedrock upon which j ustifi ca tory oppressive theories are based' (A bberley, 1 987, p. 8). Th i s oppres­ sion is also m ulti-dimensional rath e r than monolithic in that 'more than h alf the disabled people in B ri tain today s u ffer the addi tional burd en of racial and/or sexual oppres s ion ' (Abberley, 1 987, p. 7 ) . I t i s to the 'Xays that expe rien ce of disability is s t ruc tu red i n te rms of race and gender th a t attention now need s to be focused.

WOM EN AND DISAB I LITY

While a great dea l of material has been published on both specific in general , there has been almost no con s i d erati on of the w ay s in which gender m igh t s tr u c t u r e th e ex peri e n ce of d i sab i l i ty and hence disabled identities. To be sure some studies have discussed the experience of women as well as men ( Biaxter, 1 980; S u th e rland , 1 98 1 ) and one collection con cen t ra ted exclusively on the experience of women (Campling, 1 98 1 ) , but even there, few of the women specifically d iscus sed the effects of gender on th ei r experience of disability. Some national organisations, like i m pairments and d i sa b i li ty

THE STRUCTURING OF DISABLED IDENTITIES

71

the Spinal I nj u ries Asiation and the British Co u nci l of Orga n isa tions of Disabled Peop le , have established groups to co ns i d er this iss ue , a nd i n ternation ally , Di sa bled People 's International is cur­ re n tly sponsoring a similar initiative. But, as a recent Ameri can p u blica t ion d ev o t ed s pec ifically to an a n a ly s is ofgend e r a nd d is a b i l ity , no tes , ­

t he atten tion gi ve n to d i sa b i l i ty i n genera l a nd ce rtai n in particu la r, one category within the disabled po pu la t io n has received little recognition or s t udy : women. Like many soci al c h a nge m ove me nt s , th e d i s abili ty movement has often directed its energies toward pri m a ri l y male ex perie nces . Male sexual concerns and e m ploy m ent issues, for example , have received more a tten tion than c h i ld - bea ring prob l ems . (Deegan and Brooks, 1 985, p. I ) Des p i te

impai r m en ts

Part of t h e reason for this is tha t the experience of d i s a bil i ty , like 'ideology of m asc ulinity ' ( Bri ttan and Maynard , 1 984), w h ic h limits the range of persona l responses open to both disabled men a n d women .

ex pe ri e nce gen eral l y, is structured by the

to fig h t the social s tigm a of to fill socially powerful male roles . Disabled women do no t h a ve th i s o pt ion . Disabled wo men are perceived as i n ad eq u a te for economically p roducti ve roles ( tradi­ tionally considered ap propri a te for males) and for the nurturant, rep roductive roles cons id e red a p pro pria te for females. ( Fine a nd Asch, 1 985, p. 6) Whereas

d isabl ed men are obliged

d i sa bil ity , t hey can aspi re

Hence disabled wom e n find it difficult to enter male roles but, at the often denied access to traditional female rol es because they are often seen as asexual and unsuitable for, or inca pa bl e of, m o the rhood . It is this 'double disability' which st ru c tures the experience of disabled women and compou n d s the oppression of d isa bility alone. same time are

The lack of approved social ro les for d i s abled women derives from a constellation o f co n fo u nd i ng forces. Di sabled women ( like racial

or ethnic m i nori ty women) ex perience a major disadvantage in re l a tion to their relevant 's i ngle ' minority reference groups:

THE POLITICS OF DI SABLEMENT

72

disabled men and n on -d is abled women. The di sad van tage is ' d o u ble '

because disabled women fare worse than both relevant

com pa ri s on groups economically, socially and psychologically. ( Fin e and Asch, 1 985, p .

7)

W hile, from a theor e tica l (and poli ti ca l ) point of view, this wo u ld certainly appear to be the case, there is a lack of substantive e m pi ri cal data of e i th e r an objective or s u bj ective kind which directly compares the experience of disabled women and men .

This can lead to v iewpoi n t ( M u rphy,

an a l te rn ati ve position, al beit from a male

1 98 7 ) , which s ugges ts that the experience of

di sa b led women may be less oppressive than tha t of disabl ed men . Th ese arguments are now unknown to disabled women, who are

h a ppy to re h ea rs e them withou t agreeing

For example,

wi t h

them .

it has long been thought that

' women s

rol es in

society are n o t as severely limited by the wheelchair as are men's roles . The traditional view of sex roles holds that dependency and

passivity are more nat u ra l for females than for males. A woman,

eve n if disability req u ires that she use

a

wheelchair, can still

m an age a h ouse hold , direct others in household tasks, provid e emotional s u ppor t to a fam i l y , and function sex ual l y in a 'relatively passive' manner. ( Bonwich, 1 985, p. 56) In other words, there are strong

links between the assumed passivity

of disabled people and the assumed passivity of wom e n . It should be recognised that this passivity

as iated

with dis­

abled peop le is not n a tural but 'wholly ideologica l ' in Abberley's ( 1 987) sense of the term . In the case of differences between d i s abled

men and disabled women, even where these d i ffe ren ces may app ea r to be ' real ' or n atural, this may not be t h e case. For example, the

management of bladder incontinence, which is ofte n assumed to be m uch more difficult for women than men, is usuaiJy ex plained in terms of bi ol ogical differences . But s urely biology cannot account for

the vast array of methods, devices and equipment available to disabled men whereas disabled wome n on ly have the choice between

catheterisation and incontinence pads? Even where new techniques such as the electro-stimulation of bladder muscles through surgical

implants have been developed, considerably more have been given to men, who need them

les, than women, who need them more.

,

THE STRUCTURING OF DISABLED IDENTITI ES

73

Perhaps a n approp ria te slogan would be that 'incontinence I s a feminist issue'. Thus the different ( and more oppressive) experience of disability for women does not occur naturally but because The combined forces of a hostile economy, a discriminatory society, and a negative sel f- i m age contribute to a systematic rolelessness for disabled women. There is no avenue for self­ affirmation. ( Fi n e and Asch, 1 985, p. 9) BLACK PEOPLE AND DISABI LITY

There is a similar paucity of empirical material on the ways in which race may structure the individual and collective experiences of disability and hence its im plications for disabled identity, although this issue is now beginning to be addresd. However, it has been a rgued that black, disabled identity can onl y be understood within the context of institutionalised rac ism which is defined as follows; 'All at ti tudes, procedures and patterns - social and economic whose effect, though not necessarily whose conscious atten tion, is to create and maintain the power, influence and well-being of white people at the expense of black people. ' Or, in other words . . . the able-bodied have now become white and the disabled people black. It th erefore follows that the black or Asian disabled person faces a double disadvantage: that of being both black and disabled. (Confederation of I ndian Organ­ is ations , 1 987, p. 2) The crucial issue this raises is the double disadvantage of being both black and disabled . Few studies have addresed this issue of double disadvantage, though it has ben pointed out that current community care policies in Bri ta i n fail to consider the individual needs of black, disabled people (Con nelly , 1 988) and an Ameri can study has shown that black people fare considerably worse in obtai n ing disability benefits than do their white counterparts (Thorpe and Toikka, 1 980) . S i m il ar l y there is the suggestion that a handicapped person's race is

a

factor

THE POLITICS OF DISABLE M ENT

in the decision making and will determine the rehabilitative services provided . The impli cation of the services provided is that whites are more likely than blacks to be self-sufficient after rehabili tation . ( Baldwin and S mith,

1 984, p. 3 1 3)

Thus amid a growing awareness that this problem exists, more research is being u ndertaken and calls are being made for more appropriate responses. The findings of the research project so far make it clear that t here is an urgen t need to educate all members of the community about the needs of Afro-Caribbean disabled people. There needs to be more awareness about the disadvantages they face

as

a first step

towards respond ing positively and appropriately towards them. This will only come about if Afro-Caribbean disabled people themselves are encouraged to communicate their needs, aspira­ tions and expectations and suggest how best society can respond to them. (Nathwani ,

1 987, p. 1 5)

The record of voluntary organisations in dealing with issues Qf race is a por one (NCVO, 1 984) , although some disability organ­ isations, notably the Greater London Association of Disabled People, are beginning to address this issue, as other disability organisations are beginning to address the isue specifically in respect

of sickle cell

of gender. And ·

disease, black people have begun

to create their own organisations both to promote self-help and a better understanding of the disease as well as reducing the stigma attached to it. Further, they are beginning to move beyond stigma avoidance and are -attempting to focus on service provision and more specifically political issues.

A recent conference has identified some of the key factors which structure the experience of being both black and disabled (Confeder­ ation of I ndian Organisations,

1 987, pp. 7-8):

Asian people's experience of disabili ties are essentially different from other people with disabilities because of language difficu l­ ties and institutional racism.

2

There appears to be a severe lack

of

accessible information

regarding available services, such as employment, education , training, recreation, grants and allowances for disabled people.

TH E STRUCTURING

3

OF

DISABLED IDENTITIES

75

is a need fo r Asian disabled peopl e as weU as thei r carers i ntegra te with the rest of the community: to combat the isolation that a lot of t hem experience and to do awa y with any st ig m a that may be attached t o d isa b i l i t y . There

to meet one another and also

Cl ea r l y , t hen , race

can h ave a considerable influence on iden ti ty similar way to gender, bu t if the evidence on the precise nature of this influence is slender in terms of race and ge nde r separately, i t is almost non-existent i n te r m s of t h e ways i n which being both black and female m ight structure the ex per i en ce of formation in a

d isability.

RAC E AND GENDER

AN D DISABI LITY

One study wh i c h examined Black

these issues

m en and white men

found that

were most similar in the losses th ey

perce ived , e m p h asisin g - more than the fe m ale su bjects - loss of independence and i n a bility to make and spend money. Wo m en ,

on the other hand, were more concerned than were men with the effec t s of their

disability o n their personal relationships an d responsibilities . Thus, losses attri bu ted to disability seemed to be rather closel y linked to societal •sex ro l e prescriptions . At the same time, i nab il ity to perfonn tasks, w h e the r in the occupational s phere or inside the h om e , was th e l os s m os t freq u en t l y cited by a l l 4 race-sex groups, h i gh l igh t i ng a need for effective vocational rehabili tation . ( K u tner, 1 979, p. 65) This would suggest that th e effects of di s ab ili ty on econom ic and si gn i fi ca n t effect on the experi en ce of d i sab i l i ty than race, but on the basis of one study, this cannot be t a ke n as definitive. In the absence of e m p i r i ca l data, there has also been l it tl e theori s i ng on the effects of a combination of race, gender and d isa bi l i ty on perso na l experience, though it has been s ugges ted that concepts like ' m u l t iple m i n or ity statuses' and ' m ultiple m i nority groups' m igh t be a usefu l s ta r ti n g poi n t for analysis ( Deega n , 1 985) . Not on l y m i gh t such concepts be a useful basis for generating a n ge n de r-re l ated roles are likely to ha ve a more

76

THE

POLITICS OF DISABLEM ENT

u nde rs t a n d i n g of individ ual expe rie n ces but t h ey may also have im p l icati on s for a wider unde rstand i ng of the way society fu nc tions , not as a massive united and anonymous force but as a com pl ex and contradictory set of soci al relations. This also has i mp li cati ons for the way m i n ority groups are pe rcei ved .

I nstead of defi n i n g ea ch mi nori ty as oppressed and restri c ted i n by a large and u nifi ed m ajori ty , the patte rn of such discrimination can be perceived as ben e fi tti n g only a very small e li te . This n u m e ricall y ti ny group ben efi ts from the competition between disadvantaged grou ps . The disposses and second class citizens, because of their alienation and sense of isolation, allow th e m se l ves to be defined as in opposition with other disenfranchised groups. M i n ority grou ps often participate in each oth er' s exploitation, as we ll as passively support con trol by t h e few. ( Deegan, 1 985, p. 52) op por t u n i t i es

This draws at t en t ion to the i mpo r ta n t point that struggles within the i deologi cal terrain generated by op pression do not occur just between the oppressors and the opp ressed, but also amongst the, oppressed th em se l ves . A recent example of this is the way some fe m i n is ts , in the an al ys i s of the effects of community care policies on wom e n , h ave port rayed disabled people as 'chronically dependent d i sa bled ' ( Dalley, 1 988) . But i t is not j us t th e l a ng uage in wh i c h the di sco u rse is cond uc ted which fu rt hers the oppress ion of disabled people, but also their reci pes for action, as in t he case of the assertion that res i d ential care is less oppressive to women than community care, t he re fore we need more residential establishments ( Fi nch , 1 984) , ignori ng the ' evidence that res id e n ti al care is oppres ive to disabled peopl e ( M iller and G wyn ne, 1 97 1 ; U PIAS, 1 98 1 ) . To sum up, the process of identity formation i n respect of d i sa bled peopl e cannot be understood without reference to the historical process leading to the formation of c u l t ural i mages of disabled people. Th es e cultural images have portrayed disabled people as less t h a n or more than human and have ben reinforced by professional con cept io n s of d isa b il i ty as adjustment to trag ed y or the manage· ment of s ti gma . Such co nceptions not on ly fail to take accou n t of history and culture, bu t also locate the pro ble m within the indi­ v id u al , fai l i n g to take account of the ways in which ot h er factors like race or gend e r may structure the process of identity formation.

TH E

STRUCTURING

OF DI SABLED IDENT I T I ES

77

Thus the disabled identity i s not formed si mply throu gh internal psychological processes but may be externally imposed. The impli­ cations of this are that this process is not fixed but can be cha nged by challenging dominan t cu l t u ral images and by resisting the ideologies underpinning racism and sexism, for Whilst it is i m porta nt to escape from an externally imposed handicapped id e n ti ty it is also important to resist th e definitions of normality embedded in the ideologies of the able-bodied . ( Leonard , 1 984, pp. 197-8) ,

This resistance implies confronting disablism not just in th e ideologies of the able-bodied but in the i ns ti t u t iona lised practices stemming from these ideologies. This i ss u e will be returned to in the final chapter, but before then consideration needs to be given to the ways in which disability has been constructed as a social problem and the policy imp li cat ion s of this construction, beca use these factors too can play an important part in the process of disabled identity formation.

6

The Social Construction of the Disability Problem So far, it has been s ugges ted that the ideologica l construction of disability has been determined by the core ideology of capitalism,

namely individualism; and that peripheral ideologies associ a ted

with medicalisation

and und erpinn ed by personal tragedy theory

have presented a particular view of the d isabled individual. But that

is on l y part of the s tory , for the category d i sab i l i ty has also ben cons tructed as

a

particular kind of social problem . Hence

We con tend that di s a bi l i ty defini tions are not rationally deter-• mined but soci ally constructed . Despi t e the obj ect i v e reality, what becomes a disability is determined by the social meanings indi­

viduals attach to

particular

phys ica l and mental impairments.

Certain d isabilities become defined as social problems through the s uccesful efforts of powerful groups to market

their own self

in teres�. Consequently the so-called 'objective' criteria ofd isa bi l ity reflects

the biases, self-in terests, and moral evaluations of those in 1 98 1 , p. 14)

a position to infl�;�ence po l icy . (Aibrecht and Levy,

SOC IAL PO L I C Y AND DISABILITY This process of social construction is not

de penden t

solely on

individ ual meanings or the activities of powerfu l groups and vested

inte re sts , for the category disability is i tself produced in part by policy

responses to i t . Thus, to tak e an extreme position,

Fundamen tal ly, disability is defined by pu bl ic policy.

In

other

words, disability is whatever policy says it is. This observation embodies an au thoritative recognition that a disability implies a

78

SOCIAL CONSTRUCTION OF DISABILITY

79

problem or a disadvantage that req uires compensatory or ame­ liorative action . The concept does not seek to specify w hethe r the p robl em is located in the individual or in the environmen t. Nor does it attempt to identify the rationale for measures that are taken in reaction to the perceived disadvantage. Nonetheless,

represent an official belief that a disability consti­ ci rcumstan ce that o bliges a pu bli c or a private agency to offer some type of response. ( H ahn, 1 985,

such policies

tutes a d isadvantageous

p.

294)

While not d e n ying that pol icy de fi ni t i ons pl ay an important role in the social construction of disability,

it

is clear that these defini­

tions are themselves social ly con s truc ted . And further, core and

peripheral ideologies have influenced this social construction to the point where disabi l i ty has become a pro ble m

of individ ual disadvan­

tage to be remedied through the development of appropriate social

1 986; Borsay, 1 986b) . l ysis has been slow to recogn ise the role of development of social pol i cies (George and Wilding,

pol icies (Oiiver, Social policy ideology in the

1 976)

a na

although in recen t years it has been given a much more

(e.g. Wilding, 1 982; Manning, 1 985). Howe ver, disability policy h as not been subjected to any rigorous analysis of central focus,

its ideological

underpinnings in th e same way that many other social

problems have been deconstructed and

even reconstructed.

Although little conscious attention has ben devoted to the p roblem , the recogn i tion that pu blic policy contains some un­

spoken assumptions about th e leve l

of physical or other abili ties req uired to sustain a pe rson ' s life seems almost i nescapable. ( H ah n , 1 985, p . 296)

There are a n um be r of reasons why these unspoken or

id eologi es

asumptions

have not received much attention . H istorically, disa­

bility policies have not developed in their own right and so

What is coming to be called disability pol i cy is in fact an va ri ety of policies, eac h wi th q uite differen t origi n s

aggregate of a

and purposes, reflecting

a

historical situation in which concern for

disa bi l i ty has been i n te rtwi ned with effor ts much broader issue

are a s .

to establish policy in

( Erl a nge r and Roth, 1 985, p. 320)

TH E POLITICS

80

OF DISABLEM ENT

These other pol icy areas have historically in c l uded issues of poverty, com pe n sa tion for industrial workers and military personnel as wel l as broad er issues of social co n trol . Current broader issues i ncl ude

those of basic rights, the restructuring of social secu ri ty programs and b ro ad er issues of health and welfare which are likely to i m pinge on the lives of d isa bl ed people among a variety of other groups. Thus it is not surprising that Rarely has public policy toward d isabi lity been introd uced or 'disability policy ' . Ra t her, it h as ben most often seen as a s u bs e t of some other, more general policy area such as tabor, veterans, or welfare policy. ( Erlanger and Roth, 1 985, p. 320) a n a l ys ed as

But

is no longer true in many cap itali s t countries which have to devel op pol icies specifically in respect of disabled peop l e In Britain, for exam pl e , the ChronicaJJy Sick a nd Disabled Person s Act ( 1 970) a nd the Disabled Person's (Services, Consul ta t ion and Representation) Act ( 1 986) , along with the appoin t ment of a Minister for the Disabled in the I 970s, indicate moves towards the consideration of disabili ty as a discrete policy issue, rather than as a mere adjunct to other policy issues Hence the explanation for the c u rren t failure to examine the h idde n assumptions or ideologies underpinning th ese specific policy i n i tia ti ves m ust lie elsewhere. Part of the answer is undoubtedly that these ideologies are so deepl y embedded in social consciousness ge ne rall y that they become 'facts'; they are na t ural ised Thus eve ryo n e kn�ws that dis abili ty is a personal tragedy for individuals so 'afflicted ' ; hence ideology becomes common sense. And t hi s common s e n s e is reinforced bot h by aesthe tic ' and 'existential' anxiety: this

begu n

.

'

.

.

'

widespread avers1on toward disabled individuals may be the product of both an 'aesthetic' a n xi e ty , which narcissistically rejects m arked deviations from ' normal' phys i cal appearances, and of an 'existential' an xie ty , which may find an i m plici t or proj ec ted danger of dehabilitating d isa bi l i ty even more terrifying than the inevitability of dea th ( Hahn, 1 986, p. 125) .

These a nxie ties have further con t ri b u ted to the exclusion of disabled peop le from the mainstream of soci a l and economic life and in-

SOCIAL CONSTRUCTION

OF DISABI LITY

81

have p laced disabled people in segregated residential homes, s pec i a l schools and day ce n tres . And where poli cies h ave c ha nged toward keeping people in the comm u n i ty , the ideology o f personal tragedy theOry has ensured tha t poli ci es have ben geared towards doing things to and on behalf of disabled peopl e , rather than enabling them to do t h ings for fluenced policies that

establishments such as

themselves.

H oweve r ,

cord i ng to Gramsci ( 1 97 1 ) 'ideas are ma teri a l forces' , change, so wi U ideology. Th u s , as capitalist economies have expe ri e nced a varie ty of fiscal crises, so the ideology underpin ning welfare provision for disabled people has changed as wel No longer does it reflect t raged y and anxiety and the influence of benevolent hu ma ni tari a nis m . Ra t h e r , it reflects th e burden th a t non-productive disabled peop le are assumed to be a nd the i nfl u ence of monetarist realism. The ideological climate in which this finds expresion focuses upon the notion of d e pe nden cy . Thus, the idea of dependency has been used to socially construct, or perhaps, more a cc ura tel y , sociall y reconstruct the p robl e m of disability, along with a whole ra nge of o the r social p roble m s which have been reconstructed in similar ways in m any capi talist co u n ­ tries. John Moon:, Minister for H ea l th and Social Services in Britain, p rovid ed a re in t e rpre t a tion of the d eve lop m e n t of the welfare s tate : ac

and a s these material forces

For more than a quarter of a cen t u ry after t h e last war publ i c in Bri tai n , encouraged by pol itici an s , travelled down the aberran t path toward ever more d e pendence on an eve r more powerful state. Under t h e guise of com pas i on peopl e were enco u raged to se themselves as 'victims of ci rcu ms ta n ce ' , mere p u tty in th e grip of giant forces beyond their control . Rather than being seen as individuals, peopl e were ca tegori s ed in to groups a n d given labels that ens h ri ned their de penden t status: 'unemployed', 'single pa ren t ' , ' h and i ca pped ' . Thus their confidence and will to he l p themselves was subtly u nd e rm i ned , and they were taught to think only Government act ion could affect their lives. This kind of climate can in time corrupt t he human spirit. Everyone knows the sullen a pa th y of dependence and can com­ pare it with the sh eer d elig ht of personal achievement. To deliberately set up a s yste m which creates the forme r instead of opi n ion

82

THE POLITICS OF DISABLEMENT

the latter is to act d i rec tly against the best interests welfare of individuals and soci e ty . ( Moore, 1 988)

This reconstruction

has

and indeed

been very successful at both

the

the ideo­ popu l a r fears about the ' cu l tu r e of d e pend en cy ' and facilitating a res tr u c t uri n g of the welfare state. However, this account goes beyond the social constructionist ex pl an a t io n which tends to se ideas in g eneral , and the idea of d epend en cy in pa rti cu l a r, as free- floati n g and natural. Rather, i t argues t hat dependency is created t h ro ugh t h e a ppl i ca ti on of p a rt ic u l ar social policies. Moore is no t the first to poi n t to the way i n which social problems are created, particularly in respect of old people (Townsend, 1 98 1 ; Walker, 1 980) , though there are disagree­ ments about the mechanisms where by this de penden cy is created. However, both views recog n i se that d e pendency is not constructed throug h ch a n gi n g ideas; it is created by a range of economic, political, social, technological and id eol ogi cal forces. It is important a t this poin t to distinguish between a social con struct ioni s t and a social creationist view of d i sa bi lit y , as these distinctions have been noted elsewhere ( Hahn, 1 986; Oliver, 1 985; Stone, 1 985), but rarely • d i s c us s ed in any detail (Oiiver, 1 988) . The social constructionist world-view has been appl ied to a number of issues not unrelated to disability, incl ud ing med i ci n e ( Frei d son , 1 970) and special ed ucational needs ( Barton and Tom­ linson , 1 98 1 ) . This approach has thrown off the shackles of indi­ vidualism ·,and focused u pon the cultural and social prod uc tion of knowledge, showing that illness and s pecial educational needs are not simply issues of ��dividual pat hology . But s uc h an a pproach has been cri t i cised for i ts influence on m edica l soci ology (Bury, 1 986) and on special education (Oiiver, 1 98) , on the grounds of its d i ffi c u l ti es in dealing wi th the problem of relativism and i ts tend en cy to reduce the historical proces to that of label-changing. The essential difference between a social const ruc t ion i s t and a soc i al creationist view of disa bi li ty centres on where the ' p roblem ' is actually located. Both views have begun to move away from the core ideology of ind i vid u a l i s m . The soci a l constructionist view sees the problem as being located wi th i n the m inds of able-bodied people, whether i n d ividual l y (prej udice) or col l e ct ive l y , t h roug h the mani­ fes t at ion of hostile social a t tit u des and the enact m e n t of soci a l policies based upon a tragic view of disabi lity. Th e social creationist logical and political level, giving rise to

SOCIAL CONSTRUCTION OF DISABILITY

83

view, however, sees the problem as located within the institutional­ ised practices of society .

This leads to the notion of institutionalised discrimination which has been developed in recent years to explain why, despite legisla­ tion and anti-sexist and an t i-raci s t policies, discrimination against women and black people has persisted . Such discrimination has pers is ted because the implementation of these policies (i.e. through awareness training) has focused on negative individual and social attitudes rather than on the be havio u r of powerful organisations and institutions. Hence 'although the battle for formal equality has been relatively successful, the structures of disadvantage remain intact' . (Gregory, 1 987, p. 5) The idea of institutionalised discrimination against disabled people has also been used in recent years (Oiiver, 1 985; 1 988) to a rgue for anti-discrimination legislation in respect of disability, in order to chan ge behaviour rather than attitudes. Thus sexism, racism and disablism are real and are socially created by a racist, sexist and disablist society. The important advance that the social creationist approach makes over the social constructionist one, therefore, is that it does not assume that the institutionalised practices of society are nothing more nor less than the sum total of individual and collective views of the people who comprise that are not free-floating, they are themselves material forces. The point, however, is not to choose between these two views but to fi'nd a way of in tegra ti ng them; a start towards which has already ben made.

society. To make the poin t again; ideas

H ence, studies founded on a socio-political orientation reflect

a

significant attempt to bridge the gap between disability as a social construct, or th e relatively abstract concepts g u idi ng research and disability as a social creation, or the actual experience of disabled

citizens, which has ben conspicuously a bse nt in mos t previous investigations of the issue. (Hahn, 1 986, p. 1 32) TH E I DEA OF DEPENDENCY Before considering the ways in which de pe nden cy is created , it is

necesry to define what is meant by the term . In common sense usage, dependency implies the inability to do th ings for oneself a nd conseq u e nt ly the reliance upon others to carry out some or all of the

84

THE POLITICS OF DISAB LEM ENT

everyday life . Conversely, i nd e pe nd en ce s uggests that the need s no assis t ance whatever from a nyone else and t his fits n ice l y with the c u rre n t political rhetoric w hich stresses com pe t i tive individualism. In reali ty , of course, no one in a modern industrial soci e ty is co m pl ete l y independent: we live in a state of mutual interdependence. The dependence of disabled people there­ fore, is not a fea t u re which marks them out as different in kind from tasks of

individual

­

the rest of the population but different in degree.

a link between this common sense usage of th e and t h e way it is used in discussions of social policy, but these more technical discussions see at leas t two dimen­ s i ons to the term . The first of these concerns the ways in whi c h welfare states have created whole groups or c lasses of people who becom e d e pend e n t upon the s ta te for education, health care, finan­ cial support and i ndeed, any o the r provision the s tate is p re pa red to offer ( Moore, 1 988) . The second focuses on the ina b i l ity of indi­ v id u a ls or grou ps to provide their own self-care because of th ei r functional limitations or i m pai rmen ts ( I IJsley, 1 98 1 ) . Bo th of these dimensions of d e pen d e n cy have figured l a rge in curren t attempts to restructure welfare states by reducing the size a nd scope of state , benefits and services and by shifting ex i s ti ng provision away from There is obviously

term dependency

institutions and into the community. These two di mensions h ave fa c ilitated th e deve lop ment of reduc­ tionist explanations of th e phenomenon of dependency. Psycho· logi cal reductionism has focused upon the way the self-reliance of individuals and families has been eroded by the ' nanny s ta te and has thereby ' created 'pathological individuals'. Sociological reduc· tionism has foc u sed upon the common characteristics of different groups, of w hi ch de pendency is a major feat u re , thereby creatin g 'pathological groups'. Social sc i en ce has often been actively involved i n the crea tion of these reductionist explanations to the point where social scientists h ave been criticised for '

treating the concept of dependen cy as non-problematic. What is to a large'e�ten t on the underlying th eo retic al and conceptual models These in turn reflect pa r t i c u lar values and ideologies. ( Wilkin , 1 987, p. 867) measured and how it is interpreted and used will depend

In recent years both sociological ( I l lsley, 1 98 1 ) and feminist

SOCIAL CONSTRUCTION OF DISAB I L ITY

85

critiques of welfare provision ( Finch, 1 984; Dalley, 1 988) have come to prominence, and while both have addressed the issue of depen­ dency amongst disabled people, unfortunately they have done it in an uncritical way. Both have taken dependency as given; the former then seeking to identify the common characteristics of dependency groups and to explain, in sociological terms, the rising tide of dependents in the late twentieth century. The latter have sought to identify the physical and emotional costs of caring for dependents and to provide alternative approaches to the problem. Neither have sought to examine the concept of dependence critically and to suggest that the dichotomy dependence/independence is a false one; nor have they drawn on the growing body of work by disabled people themselves which has sought to suggest that disability, and hence dependency, is not an intrinsic feature of their impairments but is socially created by a disabling and disablist society. I t is to some of the ways in which this dependency is created by the institutionalised practices of modern society, that the rest of this chapter will now turn.

AN ECONOMIC BASIS FOR TH E CREATI ON OF DEPENDENCY Work is central to industrial societies not simply because it produces the good s to sustain life but also because it creates particular forms of social relations. Thus anyone unable to work, for whatever reason, is likely to experience difficulties both in acquiring the necessities to sustain life physically, and also in establishing a set of satisfactory social relationships. Disabled people have not always ben excluded from working but the arrival of industrial society has created particular problems, which have already been discussed in Chapter 2; disabled people often being excluded from the work process, because of the changes in methods of working and the new ind ustrial discipline continuing to make meaningful participation in work difficult, if not impo:;sible. The onset of industrial society did not simply change ways of working, but also had a profound effect on social relations with the creation of the industrial proletariat and the gradual erosion of existing communi ties, as labour moved to the new towns. I ndustrial­ isation had profound conseq uences for disabled people therefore,

86

THE

POLITICS OF DISABLEMENT

both in that they were l es s able to participate in the work process

and also because many previously acceptable soc ia l roles, such as b egg i n g or 'village id i o t ' were d isappearing.

The new mechanism for controlling econom i cal ly unproductive peopl e was the workhouse or the asylum, an d over the years a wh ol e

range of specialised institutions grew up to contain this group. These establishments were u ndoubted l y successful in

controlli ng indi­ n ot work. They also performed a particular id eological fun ction , standing as vis i ble monuments to the fate of others who might no longer choose to s u bj uga te themselves to the d is ci p lin a ry req ui reme n ts of the new work system . Th ere were p ro bl ems too in that it was son recognised that these institutions not o n l y crea ted d e pend en cy in individuals but also created depen­ dent groups. Th i s led to fears about the 'burdens of pau peri s m ' in the earl y twentieth cen t u ry and the establishment of the Poor Law Commission . Similar concerns are around today, al though , of course, the l a n gu age is different, and c u rren t moves towards com­ munity care have a strong economic rat i onality u nd erpin n i n g them. The reason for going over th is again here is that the issues are still th e same; disabled people are li kely to face exclusion from the­ workforce because of their perceived inabilities, and h en ce depen­ dency is s till being created . And even where attempts are made to i n fl u en ce the wor k system , they do not have the desi red efect viduals who would not or could

because, on the whole, these programmes tend to focus on labour supply. Their ai m is to make individual disabled people s u i table for work but,, while they may succeed in individual cases, such pro­

grammes m ay also have the opposite effect. By packaging and

them as a special case, the idea that there is something dilferent abou t d isa bled workers is reinforced and may be excl u s ion

sel l i ng

­

ary r at h e r then i nclusionary . B u t it doesn't have to be this way, for The alternative, or more p rope rl y the

s u ppleme nt ,

to these

programs is a focus on t he demand side of the market, maki n g people more e m ploya b le and

more a

part of gen eral social life by

changing the social organisation of work and of ot he r aspec ts of

everyd ay life,

through

the removal of architectural barriers,

nondiscrimination and affirmative action programs, m a i n st ream ­ ing in the schools, and

so on. U n til recently, there has been al m os t 1 985,

no con c ern wi th these poss i bi l ities . ( Erl anger and Roth,

p . 3 39)

87

SOCIAL CONSTRUCTION OF D ISAB ILITY

I t could, of course, be argued that gove rnme n t pol icy aimed at p rovid ing aids to employment and the ad ap ta tion of workplaces is precisely this approach, but it is nothing of the kind. These initiatives are all geared towards the supply side of labour, at making individual disabled people more econom i cally prod u c ti ve and hence more accepta ble to employers. There are no government i ncen ti ves to create barrier-free work environments nor can Ford claim a grant if it wants to make its assembly line usable by all the pote n tial workforce. Neither can other manufacturers wi shi n g to des i g n mach i nery or tools that are usable by everyone, �ardles of their fun c ti on al abilities, seek government assistance. There are v irt ual ly no a t te m p ts in modem capitalist societies that are targeted at the social organi sation of work, at the demand side of labour. And give n the size of the reserve pol of labour that cu rren tly exists in most capi talis t societies, it is unlikely that such targeting will occur in the forese ble future. Given this historical and current si t u a tion it is hard ly surprising that uncritical sociologi cal reductionism can characterise disabled p eople and other groups as foll ows : Their condition or situation makes them economically unproduc­ t ive and hence economica lly and socially dependent. ( l lls ley 1 98 1 , p. 328) ,

This is onl y pa rt l y true, h oweve r ,' for des pi te the high rates of unem­ ployme nt in the ind ustrialised world, the majority of d i sa bled peop le of work i ng age do have a job, and hence are economically productive. In addition, day ce n t res adult tra inin g centres and sheltered work­ shops make a considerable economic contribution by carry i ng out jobs that cannot easily be mechanised at wage rates that make Thi rd World workers look expensive. But more importantly, this takes a narrow view of the economy and fails to recogn ise the importance of cons u m ption At present the benefits paid to disabled people amount to almost seven billion pounds a year (Disability Alliance, 1 987) most of which 'will almost i nvariabl y be spent to the fu ll (George and Wilding, 1 984) . The numbers of firms now producing aids and equip­ m en t for disabled people and the seriousness with which motor manu­ facturers now take disabled motorists are testament to the important and 'productive' role tha t disabled people pl ay in the economy of late capitalism; that is, a n economy driven by con su m p t io n ,

.

'

.

THE POLITICS OF DISABLEM ENT

88

nar row d efi ni tion , the Bri tish roya l family can economically un prod u ctive and econom i call y and socially d epen d e n t . However, it is recognised that the institu­ ti on of the m on a rchy performs an importan t economic role and they are not labelled 'dependents', except by their fierces t critics. That disabled people can be so labelled therefore, is due to a variety of other fac tors and is not solely a function of inaccurate assumptions a bou t their role in the economy. Some of these oth er factors will now Following l lls l ey 's

be

characterised

as

be considered .

A POL ITICAL BAS I S FOR THE CREATION OF DEPENDENCY

Policies enacted th roug h the legislative process also h a ve the effec t of of the Bri tish welfare state is l egi t imated by the desire to reduce our 'culture of dep e n d en cy ' . In the case of disability , both the National Assistance Act ( 1 948) and the C h ron ically Sick and Di sa bled Person's Ac t ( 1 970) aimed to p rov id e services for di s a bl ed peopl e and in so d oi n g , rei n fo rced crea t i ng depende n cy and the c u rren t restructuring

the no tion that people who happen to have d isa bil i ties are people are ' h e l p l ess ' , unable to choose for themselves the aids to opportunity th ey need . (Shearer, 1 98 1 , p. 82} wh o

Mo re rece n tly , the Disa bl ed Person's Representation) Act ( 1 986) , born

i nadequacies

of prev ious

( Services, Consul ta ti on and out of both a recognition of the

legisl a ti on as wel l

as

a wish

to

involve

disabled people more in shaping their own destinies, is underpinned

by the desire to improve the services for this ' depen de n t grou p' . I t offers disabled people the right t o be assessed, consulted and represented . However, it is noticeably s i le nt on how these rights can be achieved i n the face of recalcitrant local a u thori ti es , just as previous legis la ti o n was s i l en t on how services could be obtained . I n fac t , this Act i s yet a fu r th er extension of the professional and administrative approaches to the problem s of d isa bil i ty , rather than an acknowledgement of d isa bi l i ty as a human rig hts issue. Yet in the l a te stages of the Second World War, the D is a b led Person's ( Employment) Act ( 1 944) recogni sed that d i sa bled people

SOC I A L CONSTRUCT ION OF DISABI LITY

89

had a right to work. This legislation was not uninftuenced by the shortage of labour at the time or the collective guilt of seeing ex­ servicemen, disabled while fighting for their country; but economic and social climates change, and these rights have never been enforced. U nsuccesful attempts to acknowledge the human rights issue involved, through the passage of anti-discrimination legisla­ tion, have surfaced in recent years but Parliament in its wisdom has never allowed the issue to receive legi slative acknowledgement (Oiiver, 1 985). Thus the legislative framework remains locked into a profes ional and administrative approach to service provision. The ways in which service provision further �rpetuates de�ndency will be considered in the next section, but first, one further political basis for the creation of de�ndency needs to be considered. A further way in which de�ndency is, at least, reinforr.ed is through the manner in which the discourse with regard to disability and social policy is conducted . From the patronising way politicians discus disability in Parliament, through the failure of social policy analysts to examine critically the concept of d isability (Oiiver, 1 986) , to the failure of policymakers to consult with disabled �pie, this de�ndency is reinforced . Nor indeed when attention is turned to community care does the discourse alter, for community care implies 'looking after �pie' (Audit Commission, 1 986) . The nature of this discourse has recently ben criticised thus: the need to be 'looked afte r may weD adequately describe the way potentially physically disabled candidates for 'community care' are �rceived by people who are not disabled. This viewpoint has a long history, and a correspondingly successful appl i catio n in practice - which has led to large n umbers of us becoming passive recipients of a wide range of professional and other interventions. But, however good passivity and the creation of de�ndency may be for the careers of service providers, it is bad news for disabled people and the public purse. (BCODP, 1 987, 3.2) '

The political sphere thus pl ays a s ignificant role in the social creation of de�ndency a�ongst disabled people in terms of both its legislative enactments and the way it conducts its discourse about policy Further, it lays the foundations for the ideological climate within which services are provided and professional practice carried out. .

90

THE POLITICS OF DISABLEM ENT

A PROFESS IONA L BAS I S FOR TH E CREATION OF DEPENDENCY

number of ways in which d e pe nd ency is created t hrough the d eli ve ry of professionalised services. The kinds of services that are available, nota bly residential and day care facilities wi th their inst i t utionaJised regimes, thei r failure to involve disabled people m eani n gfully in the running of such facilities, the transportation of users in s pecia l i s ed transport and the rigidity of the routine a c t i v ities wh ich take p l ace therein, alJ serve to institutionaJise disabled people and c reate de penden cy . While in recent years some attempts have been made to address this problem of d epend enc y creation in these facilities, it remains unfortunately true that power and con trol continue to rem ai n with professional staff. Many co m m u n i ty ser­ vices are delivered in si m i lar ways and reinforce dependency; disabled people are offe red little choice about aids and equipment; t ime s at wh i c h profess i onals can attend to help with matters like toiletin g , dressing or preparing a meal are restri cted ; and the limited range of tas k s that professionals can perform are limited because of professionalist boundaries, employer req u i reme n ts or trade union There are a

practices.

The p rofessional-client relationship can i tself also be de pe nde n cy­ creating and the very l a n guage used suggests that power is unequally distributed wi t h i n this rel a tio n sh i p . Even when new profess ional approach es have been d e veloped , as with the move from a medical to a n educational approach to mental ha nd ica p , the problem remains for both approaches that they

create a professional/clien t relationship which enshrines the pro­ fessional in a world of exclusive and privileged knowledge , and con s eque n tly entombs the individual wi th l ea rn i ng difficulties in a fundamentally d epende nt role. ( Brechin a n d Swain, 1 988, p. 2 1 8) Recent attempts to address this problem through changing t he terminology from 'client' to 'user' or 'consumer' ackn ow l edge that the problem exis ts , but do little to change the structures withi n which these power relations are located . Economic structures deter­ mine the rol e s of p rofession als as gate ke epe rs of scarce resources, l egal structures determine their controlling func tion s as administra­ tors of services, career structures determine their d ecis ions a bou t

SOCIAL CONSTRUCTION OF DISABILITY

91

whose side they are actually on and cognitive structures d e t e rmine their practice with individual disabled people who need h elp otherwise, why would they be employed to help them? This is not just another attack on overburdened professionals, for they are as much trapped in dependency-creating relationships as are their clien ts. However, all is not as it seems , for in a fundamental sense it is professionals who are dependent upon disabled people . They are dependent on them for their jobs, their salaries, their subsidised transport, their quality of life and so on. Thus if disabled people and profesionals are trapped i n these dependency-creating relationships, is there a way out of the trap? A false start has already ben made through the promotion of the goal of independence which figures largely in the interventions of most professionals and the articulated aims of most disabled people . I t h as ben a false start, however, because i n advancing th e idea of independence, professionals and disabled people have not been talking about the same thing. Professionals tend to define independ­ ence in terms of self-care activi ties such as washing, d ress ing, toileting, cooking and eating without assistance. Disabled people, however, define independence diferen tly, seeing it as the a bi l i ty to be in control of and make decisions about one's life, rather than doing things alone or without help. Hence it is 'a mind process not contingent upon a normal body' (Huemann, 1 983) . If disabled people and profesionals are ever going to engage in dependency-reducing rather than dependency-creating relation­ s h ips , then the following advice from a disabled sociologist must be taken into account: must expand the notion of indepe nde nce from physical to sociopsychologic decision-making. I n de pe nd ent living must include not only the quality of physical tasks we can do but the q uality of life we can lead. Our notion of human integrity must take into account the notion of taking risks. Rehabilitation personnel must change the model of service from doing something to �meone to planning and creating services with someone. In s h ort , we must free ourselves from some of the culture-bound and time-limited standards and ph ilosoph y that currently exist. (Zola, 1 982, p. 396) We

achievements

There are, of course, many other

ways in which de pendency is

92

THE POLITICS OF DISABLEM ENT

created, whether these are patronising social attitudes or the in­ accessibility of the built environment, which constantl y force dis­ abled people to seek help. There is no need to consider these further here, but, we need now to consider

the disabled i nd ividual who

stands at the end of these economic, political and professional

processes which create dependency, for both the experience of disability and of dependency are structured by these wider forces.

TH E C R EATION

OF THE DEPENDENT I N DIV I DUAL

A recent study of a small group of young d isabled people attending

a

further ed ucation college found that Many of the students arrive i n college with very negative self­ image and por self-esteem. Often they appear to have ben

conditioned i n to accepting a devalued social role as sick, pitifu l , a burden of charity. (Hutchinson and Tennyson, 1 986, p. 33)

Precisely how and why these disabled young people came to see , themselves in this way now needs to be addresd .

Al of the young people studied came t o the college from special

schools and there is no doubt that the medical hegemony in special

ed ucation has hardly been challenged by recent legislative changes (Warnock,

1 978; Ed ucation Act 1 98 1 ) . In practice medical need still

predominat,es over educational need; disabled children still have

operations (necesry and unnecessary) at times which fit in with the schedules of surgeons and hospitals rather than educational

programmes, childrei are still taken out from classes for doctor's appointments or physiotherapy and the school nurse is still a more influential figure than the teachers

(Bart, 1984).

If children are

brought up to believe, through experiencing a range of medical and paramedical in terventions, that they if

are

il, we cannot be surprised

they passively accept the sick role. But i t is not only the intrusion of medicine into ed ucation which

creates dependency through an acceptance of the sick role. They also see themselves as pitiful because they are socialised into accepting disability as a tragedy personal to them . This occurs

because teachers, like other professionals, also hold to this view of

disability, curriculum materials portray disabled people ( if

th ey

SOCI AL CONSTRUCTION OF D ISABILITY

93

appear at all) as pathetic victims or arch-villains and their education takes p lace in a con tex t in which any u nders tand i ng of the hi s tory and pol it ics of di sabi l ity is absent. The s i t u a ti on has been summa­ ri sed as follows;

ed uca tio n system, then, is one of the main channels the predominant able- bodied /m i nded percep­ tion of the world a n d ens uri ng that disabled school le ave r s are social ly immature and i sol a ted . This isolat ion results in pasive acceptan ce of social discrimination, lack of skiDs in faci n g the tasks of ad u l thood and ignorance about the main social issues of our time. All this reinforces the ' eternal children' myth and ensures at the same time disabled schol leavers l ack the sk i l l s for overcom i ng the m y th . (BCODP, 1 986, p. 6) The special

for disseminating

However, it is no t just th e educational environment which creates this depend en cy ; the social environment plays a significant role in sha ping the view that some disabled people hold of themselves as burdens of charity. To begin wi th , many of the traditional vol u n ta ry organ isa tions for disabled people are quite shamdes in th e way they reinforce this charitable image through their fu nd- rai sing campaigns. Brandon ( 1 988) accuses many of these organisations of j 'rattling collection boxes on the most grosly disablist of themes . The prime objec ti ve is to maximise i n com e , regardles of t he image presented. The unfortunate thing' about this is that many of these organ isa tions are not eve n aware of the way in which this approach creates depende ncy , and even if they are, then an instrumental, 'ends justifies means' philosophy i s still often used ( Hadley, 1 988) . But it is not only volu n tary organ isations who beg on behalf of disabled people: some professi onals are even e m ployed by govern­ ment age nci es to do so. For example, disablement resettlement officers (D ROs ) employed by the Manpower Services Commission, i nstead of ensuring that employers are carrying ou t their legal duties u nd er the Disabled Person's ( Employment) Act, are gi ven the task of pers u adin g employers to give jobs to d is a bled people. Perh aps it is a mark of ou r civilisation in th e industrialised worl d that we employ some people to beg on behalf of others; in many so-called less civilised societies, disabled people are at l eas t accorded the d ign i ty of begging on their own behalf.

Fi n al l y , many disabled people

are forced

i nto the position of

'

THE POLITICS OF DISABLEM ENT

p assive recipients of the unwanted gifts or inappropriate services for to refuse such 'generosity' would confirm the 'fact' that disabled people have not come to terms with their disability and have a 'chip on their shoulder' . Examples of unwanted or unsuitable gifts are the wheelchairs designed by Lord Snowdon which tu rned out to be unusable by anyone who is paral ysed ; and examples of inappro­ priate services are the special vehicles, usually with the name of the donor written large all over the side, which are often used to transport disabled people. These are particularly used to carry disabled people to and from segregated facilities such as special schools, day centres and residential homes. This chapter has suggested that social policies in respect of disability have been influenced, albeit unknowingly, by the core id eology of individualism. However, recently peripheral ideologies have shifted away from the ideologies of disability as personal tragedy and towards disability as dependency. This dependency is created amongst disabled people, not because of the effects of the functional limitations on their capaci t i es for self-care, but because their lives are shaped by a variety of economic, political and social forces which produce it. Dependency is not a problem simply for the • dependent individual but also for politi cians , planners and profes­ sionals who have to manage (control) this dependency in accord with current social values and economic circumstance. This p roblem and the political responses to it, both on the part of the state and of disabled people themselves, will be the subject of the next two �apters; for it is only through a proper consideration of the politics of disabi lity that disabled people can be seen as not simply constituted by the ��riety of structural forces already considered in this book, but also as active agents in the process of constituting society in its tota lity.

7 The Poli tics of Disablemen t

Existing Possibilities finaJ two chapters will con sis t of an an al ysi s of the curren t provision of services, a consideration of future tren ds within the capitalist s ta te and a mo re spec u l ati ve and visionary discussion of aJternative possibilities. A cri t iq u e of the current restructuring of the welfare s ta te aJon g lines set by the politicaJ righ t will be provided and this will be fol lowed by a consideration of alterna tive con­ ceptualisations provided by th e political left. FinaJly it will be argued that we need to move beyond the traditionaJ left-right framework for u nde rs ta nd ing political ac tivi ti es , with its asated and traditional notions of interest representation, an d move towards an understanding of the di sability movement as part of the develop­ ment of new social movements, characteristic of late capital i sm . Only then will we begin to grasp th e importance of the pol i ti cs of The

disablement.

THE RESTRUCTU RING O F

THE WELFARE STATE - THE

ELI M I NATION O F DEPENDENCY? Since the mid- 1 970s there has been a world econ omic recession,

result of whi c h has

fu t u re of welfa re

one been to caJI into question both the nature and

states in the i nd ustrial world. This questioning has

u s u all y been raised within the

at leas t three dimensions�

(a)

a

crisis in

l a ng u age of crisi s , of w h i ch there are

the welfare state in t h a t

it was not

meetin g social

needs, ( b)

a crisis of the wel fare state in that it was creating n eed s that it could not mee t,

95

THE POLITICS OF DISABLEMENT

96 (c)

a crisis by

the welfare state in that the rising cost of welfare was

creating a

crisis of capitalism

i tself.

Further, The crisis definition

is now being used as an ideological basi s for

red ucing social expenditure, changing redistributive patterns in d isfavour

of

pons i bility

the margi n a l groups and red ucing government

in social

pol icy .

While both the precise response

to

res­

(Oyen , 1 986, p. 6)

nature of

this crisis and the ideological

it differ from ind ustrial country to i nd ustrial country, all

h ave had broadl y similar experiences. In

Britain, the left have the view that there is a crisis in the welfare state and that the solution is to increase p ubli c expenditure on i t . The right, on the other h a nd , have subscribed to t h e view that there is a crisis of the welfare state and, if not properly managed and con trolled , it could indeed become a crisis of the capitali s t state. As the right have held political powe r for most of thi s period, it is thei r view of the n a ture of the crisis which has shaped the process of • restructuring the welfare state. A maj or und erpinning of the ideo­ logi cal basis for this res tru ct u ring has ben the issue of dependency. Reductions in expenditure, changes in redistribution and the grad ua l withdrawal of the state from people's lives, have all been legitimated on the grounds of the need to reduce dependency. There is �i t tl e doubt, with regard to disabled people, that their experiences of the we l fa re state coincide with both the 'crisis in' and 'crisis or dimensions. I n other words, they have not received all the broadly subscribed to

services they need an d in many cases those services that they have

received

or reinforced their dependency. So, it has to be ( or both) of are u nlikely to succeed in red u cing de pendency,

have created

said that fu ture policy options s tem m i ng from either these dimensions

whether it be physical or ture

wi l l

on l y serve to

social. Simply increasing public expendi­ lock disabled people further into the

dependency-creating relationships already described, and reduc­

tion s and redistributions

will condemn disabled people

and loneliness in the community

or institu tionalisa tion in

to isolation resid e nt i al

care. In the previous chapter, primacy was given to the economic basis for creating d e pendency, but

it has to be concluded that in the

97

EX ISTING POSS I B I LITI ES

curren t

pol i tical cl i ma te , there is l itt l e scope for inte rve n in g i n the

economy, for

Social policy has been ass i gned . . . to the role of intervening in a natural order of econom ic relationships to modify

their outcome

in the interests of 'social' goals. In bo t h cap i ta l ist and state socialist societies, social policy has opera ted as a ' handmaiden ' to the economy. (Walker, 1 984, p. 33) Hence the chances of tackl i ng

this econom ic basis for the creation of

dependency amongst disabled people 'are slim because the same

societal forces

which manufacture d isabi li ty also m i tiga te against a

structural response' (Borsay, 1 986a, p. 1 88) . This does not imply the complete pessimism of a n eco n o m i ca lly

determinist position which is an accusation sometimes made of sociology in general, and

M a rxis t sociology in part ic ul a r . While th e

economic may be de t e rm i n i ng 'in the last instance', there is con­ siderabl e scope within what Gramsci called the state (conceptual­ ised as a

social relation)

and civil society for individuals,

groups,

interests or classes to act autonomously . The poin t being made h ere is not tha t economics determines poli tics, bu t the more limi ted one

th at the poli tics of social policy is circumscribed by economic considerations. Certainly,

in

the current political climate, the Conservative

G ove rn men t in Britain shows little in cli na tio n to in tervene in th e economy, and

as far as soc ial policy and state welfare is concerned , it

is actively withdrawing through th e strategy of p r i vat isa t ion ( Le G rand and Robinson, 1 984) . This privatisation has th ree

aspects; p rovision , reductions in s ta te subsidies and reductions in state regulation; and is underpinned by the rhetoric of targeting, consumer choice and dependency red u c ti on . It is emph a­ sised by recen t government reports ( DHSS, 1 988; N ISW, 1 988) wh ich s t ress the need to give co nsu mers (a key word in the new rheto ri c) more choice of, a nd control over, services . In reality, no one, except those on the ex.treme righ t , see all welfare services being provided by the private m arket as th e ma i n obj ective , but rath er it is the red uctions in t he role of the state within a ' m i xed economy of welfare ' which is the main goal . A s fa•· a s d i s ab l ed people are concerned , this privatisation i s not somethin g t ha t has occu rred only in recent years. Services suc h as reductions in state

98

THE

POLITICS OF DISABLEMENT

residential care and special education have been provided by

organis a tions like the C heshi re Foundation and the S pasti cs Society a l mos t since the i n cepti on of the welfare state, and

aJ th e evidence

suggests that these services create dependency in ex actl y the sam e way as state services. More recently the privatisa tion of some

cash

payments for some severely disabled people who would previously have had statutory rights to such payments, through the establish­

m en t of a tru s t fund to be adm i nistered by the Disablement Income Group,

is on ly likely to reinforce dependency by furthering the

i m age of disabled people

as burdens of charity.

It is, perh ap s , ironic that the model for providing these privati sed services is that of the supermarket; the argument being that packages of care can be purchased just as customers purchase products from supermarket shelves. I ronic, because many disabled people find s hopp i ng in supermarkets diffic ul t if not i m pos i bl e because of p hysical access, difficulties in reaching shelves and the fact that prod uc ts and pac k aging are

tailored

to the needs of the

modern nuclear family and not to the needs of individuals. In short , supermarkets offer

a

li m i ted range of products which suit the needs

of par ti cu lar groups in society and

if not in these groups, then the

consumer is not sovereign, as the rhetoric would have it. Thus, for

many disabled people , the s uperm arket model of provision is unlikely to offer an y t h i n g

substantially d ifferen t from the provis ion

of s ta te services; that is to say, little choice over wha t is provided and

li t tl e control over how it is p rovided . Further, the s u perm arket

model, u tili s i n g the rhetoric of consumerism has ben criticised, for

In sum . . . this model is a ' h arml ess

version' of consumerism

-

it

req u i res little serious change, b u t much public visibility . I t is

abou t the appearance, not s u bstan ce ,

P· l )

of change. ( Winkler, 1 987,

What the su per market is alleged to offer, but clearl y does

not,

is

ch oi ce and control . The key issue for the future as far as the left is concerned is whe t h er the 'crisis

in' th e welfare sta te can be resolved

by ofering users of services choice and control. The trad i tiona l view from the left suggests that it can, by the modification and ad apta t ion of first pri n ci pl e s :

The c h all en ge that faces

us is

not th e choice between

universalist

•

EXISTING POSSI BILITIES

and selective services.

99

The real challenge resides in the questi on :

w ha t parti cular infrastructure of universalist services is needed in

order to provide a framework of values and opport u ni ty

bases be developed acceptable selective services provi d ed as social rights, on criteria of need s of s pecifi c categories, groups and te rri torial areas and not depe nd ent upon ind ividual tests of means? (Titmuss, 1 968, p. 1 22) within and around which can

To u pd ate the language somewhat, it s hou ld be posi ble to allow for choice and control in service provision within a universalist infrastructure if consumers h ave social rights to these services and if there are mechanisms w he reby the needs of groups and communi­ ties, w h et he r local or interest commu ni t ies , can be arti cu lat ed by t h em , themselves. This view i s therefore articulated by some of t h e new thinkers on the left where it is only the words, not the ideas, that have c hanged . The goal would be truly universal services; that is, for the community and not separate client groups, dis t rib uted according to need rather th an a bil i ty to pay . They wou ld be based on small local areas, as far as possible, to enable democratic involvement a nd control. This would help to counteract pa ternal i sm and d e pendence. (W a lker, 1 984, p. 43) Specifically, as far as disabled people are concerned, th e left i n Britain, in the shape of the Labour Party (Meacher et al. , 1 986) , has a ttem p ted to switch the emphasis away from n eed s and on to rights. But i t has become clear that if disabled people are to have social rights to servi ces, then the legislative framework must do more than s i mply list these services (Chronically Sick an d Disabled Person's Act) or provide profesional and ad mi nis trative approaches to the i r p rovis i on ( Dis a bled Person 's [Services, Con sul ta tion and Represe n ­ tation] Act) . This inevitably im pl ies t he n ecesi ty for anti­ discrimination l egisl a tion which would not only provide public affirmation of the u naccep tabi li ty of d iscri mi nation against disabled people, but also, if pro perl y d rafted , a fra mework for the enforce­ men t of service delivery and a mechanism for profesional accounta­ bility. In both political and policy - maki n g terms, an e m phas is on social rights rather than individual needs, suggests a move away from the id eology of individualism and th e beginnings of attempts to

1 00

THE

address

POLITICS O F DISABLEMENT

the creation of dependency at both political and profess ional

levels. By i tself it would not be enough, of course, as the experience in the areas of race and gender demonstrate (Gregory, 1 987) . Therefore an essential adj unct would be legislation facilitating complete freedom of information which goes beyond current attempts to provide acces to i nformation held on computers and in locaJ authority files. The locked medical cabinets

would

need to be opened and the unofficial

documents that are kept as ways of avoiding information-disclosure ( as

with

current practices which require information to be provided

to parents under the statementing regulations of the Education Act [ 1 98 1 ] ) , would need to be made available. Finally, a mechanism whereby the needs of groups and communi­ ties can

be

articulated , needs to be developed . This can only be

accomplished through the adeq uate funding and resourcing of organisations controlled and run by disabled people which have ben goi ng from strength to strength throughout the world in the 1 980s . Significantly, there is some evidence that these organisations of disabled people find it easier to flourish in the underdeveloped rather than the industrial world .

This is due, in part, to the­

resistance to change of bureaucratic and

profesional

structures in

the ind ustrial world, but also to the existence of a large and powerful sector of tradi tional organisations for the disabled who remain locked into dependency-creating service provision and attitudes, and who, consequen tly, have vested interests in maintaining the s

latus

qUIJ. ,

these developments by themselves, or an incremen tal approach to them, is likely to prove successful . Anti-discrimination None of

legislation without freedom of information and a supportive network

of disabled people, will simply mean that the lawyers will get rich; freedom of information

by

people will be subjected

itself will mean that individual disabled

to profesional

mystification and slight of

hand ; and support for the disabled people's movement without a framework which guarantees basic human rights will leave the movement politically emasculated. But an integrated programme as suggested above, could provide a means of addressing the problems of dependency-creation at both political and professional levels, and

hence go

some

way to resolving the 'crises' both, in and of, the

welfare s tate, at least as far as disabled people are concerned. Given that this in tegrated programme could represent a way

EXISTI NG POSSIBILITIES

101

forward i n terms of offering a more appropria te basis for the provision of welfare state services for and with disabled people, the crucial question then concerns the possibilities of getting this and/or other programmes on to the political agenda. There are two ways in which this question can be examined; firstly, in terms of direct participation through the ballot box, and secondly, through pressure-group activity. It is these political strategies that now need to be considered .

THE POLITICAL PARTICI PATION

OF

DISABLED PEOPLE

That d isa bled people con s ti tute a potentially powerful political force there can be no doubt, for according to Fry ( 1 987) a recent MORI poll in Britain found that 9% of the public ( 1 8 + ) considered themselves to be d i sa b l ed and 27% said that another member of their family was disabled . This study (Fry, 1 987) looked at the political participation of disabled people in the General Election of 1987, and found that many disabled people did not even appear on the electoral register; others, particularly blind and deaf peopl e were denied access to all the information necesary to make an informed choice; and other disabled people, postal and proxy voting notwithstanding, found the p robl em of transport and physical access to polling stations too daunting to allow them to exercise their right to vote. There are two further ways in which it is difficult for disabled peop le to pa rti ci pa te wi thin the party system. Firstly, many local constituency headquarters are inaccesible and hence it is very difficult for them to become grasroots activists and to feed in disa b ility issues at this level . Second l y , although th e re are ex am ples of disabled politicians at the local and national level, it is also very difficult for many disabled poli ti cal activists to offer themselves as candidates at local or national elections, for the problems of both cam­ paigning and door-to-door canvassing may prove to be i m poss i b l e Even if these barriers to political participation were removed, it would not neces rily mean that the disabled population would cohere into an ac tive political force to which all political parties would need to take notice. There are a number of reasons for this. ,

.

To

begin with there is a great deal of variety within

the disa bled

1 02

THE POLITICS OF DISABLEM ENT

population as a whole - differences in soci al clas, age, sex, fa m i l y circumstances and clinical conditions - as well as the fact that disability may have d eveloped after poli tical commitments had been established. In addition, many disabled peop l e do not necessarily regard themselves as disabled, or even if they do, would not contemplate joini n g an organisa tion for disabled people . Finally, as a consequence of disability, some people may d ise n gage from politi c al activity, ei ther beca•JSe their physi cal i m pai rmen t poses l imi ta tion s of a ph ys i cal or psychological kind, or because t h ey are aw are that in many contexts they lack any basis for exercising power, e.g. through the wi thd rawal of thei r l abour. (Oiiver, 1 984, p. 23)

E x te nd i ng this a nal ysis , it has been suggested a lso that the med i cal approach to disabi li ty has fostered artificial divis i ons within the di sa b l ed population ( Borsay, 1 986a) .

But

th ese divisions do not

arise simply from the medical

app roach , for th e state also provides services in such a way as to

foster divisions within the disabled pop ul ation . Hence, it gives tax

allowances to blind people but not to other categories of disability,

m o bili ty allowances to those who cannot can,

walk but not for those who

and higher pensions and benefits for those injured

the services than for those with congenital

disabilities

at work or in or those who

have had accidents. This is not an unin ten tion al consequence of but a deliberate tactic which the state has developed in its d ea,l i ngs with other groups and can summed up as 'divide and

s ta te provision rule' .

This idea of dislt;bled people as a group divided amongst i tsel f has obvious i mp l i cations for any notions of clas-based political a ctivi ty :

The myriad of disability-specific programs and policies, the segregation of disabled people, the inabili ty to gain access to organised society, to experience an integrated and ad eq ua te

education, to obtain m ea n i ngfu l employment, and to socialy interact and partici pa te has resulted in a politicaly powerles and d i ffu se clas of people who are unable to coalesce wi th other gro u ps of disabled peopl e on common issues, to vote , to be seen or heard. This class has accepted the s tigma and caste of second­ hand citizenship and t h e incorrect j udgement of social inferiority. ( Funk, 1 987, p. 24)

EXISTI NG POSS IBI LITIES

This description of th e political ' und ercl ass thesis' developed to

1 03

situation fits in nea tly ex pl ain the

with the political s i tua tion of

black people . The usefulness of

this

idea of an underclas is

still

within sociology , cen tri ng around the issue of whethe r is a sub-group of the

worki ng

clas or a

group

being d e ba ted an

underclass

rel ega ted to the

margins of society on the basis of personal or group characteristics.

In either case disabled people as an underclas are likely to remain powe rles and marginalised, at l eas t as far as organ i sed political act ivity is concerned. Thus it is unlikely that disabled people can expect the party politi cal proces to serve their interests well . If we re t u rn to the issue of anti-discrimination legisl a tion , while it is true that this issue has ben forced on to party-political agend as , and indeed, several bills have even ben introduced in Parliament, nonetheles, all of these have ben defeated, usualy covertly, but on one occasion, overtly th ro ugh the operation of the party pol iti cal system; that is, t h rough a sustained campaign by Conserva ti ve whips to ensure that their p arty members voted it down (OJiver, 1 985) . Hen ce, d isa bl ed people can hardly ex pect to art ic ulate and achieve their pol i t ical ends through the party sys tem, and this raises the q uestion of whether t hey can expect p ress ure-gro u p activity to serve them better.

THE POLITICS OF PRESSURE-GROUP

ACTIVITY

m id - 1 960s

onwards, it beca me clear that, despite rising number of groups were not shari ng in the new material and social benefits that were being created, and that traditional political activity was not even getting these issues on to th e political agenda. This resul ted in the creation of new kinds of presure groups who were likely to campaign around single issues of one kind or another. Groups like Shelter and the Child Poverty Action Group are examples of these, and specifically, in the area of disability, the Disablement I ncome Group is the most prom ine n t exa m ple . The establishmen t of these groups From the

affl u ence, a

was a

reaction to what was perceived

character of British

democracy .

to

be the frau d u le nt

There were of course s peci al

1 04

TH E POLITICS OF DI SABLEM ENT

cond i ti ons w h i c h e xpla i ned the new ex p ression of protest . Public running high . The polici es of s uccess iv e Governments had been built on rel a ti vel y full e m pl oy m en t and steadily i ncreas i n g national weal th. This meant that the views and interests of workers, pen sion ers and o thers were believed to weigh more heavily than they had done before the war in the conduct of na tion a l affairs . . . Some groups - like the elderly, one­ pa ren t families and sick and disabled people - were observed to h ave been left beh i n d in the race for prosperity . ( Townsen d , 1 986, expectations had been

pp.i-ii ) If, then, dis a bl ed people

could not get

i ss u es

on to

the

political

age n d a through the normal processes of political participation , then this raises th e issue of whether the avenue of pressure-grou p activity was like l y to be m ore successful . The most sophis ti cated analysis of so

is provided by Borsay ( 1 986a) who draws h eavil y on the p rovided by Cawson ( 1 982). Cawson suggests that p luralis t analyses of pressure-group poli tics are now i nad eq ua te because of the n a t u r e of t h e 'corporate state ' , and that it i s necessary to distinguish between com peti tive groups, whose members share a com mon in terest, and corpora te groups, whose members s h are a common pos i tion within the division of Jabour. Needles to say, it is the latter who h ave most i nfluence on the political de c i s i on - m aki ng process. As mos t d isability organisations are of the form er kind, their partnership with govern ment (Oiiver, 1 984) is un lik ely to have this

far

framework

much in flu e �ce . This pa rtne rsh i p does not i nev i ta bl y banish the needs and op in ions of ph ysically disabled people from sight, but the allegiance of corporate professional i n te res ts to economic devel op men t stacks the cards aga ins t their fai thfu l representation in the sh ap i ng and administration of policy. (Borsay, 1 986a, p. 1 5)

of the s truc t u ral location of organisations that lead s to such pessimism . As most of th ese organisations are registered as charities, direct and overt political activity is preclu d ed . But more importantly, these d isabi l i ty organisations have, over the years, built up a relationsh i p with the state, or the 'es ta bl is h men t' as Borsay calls it, which gi ves them I t is n ot, however, sim ply a matter

these d is ab i l i ty

credibili ty, but little power.

1 05

EXISTI NG POSS I B I L I T I ES

The s t ri n g of more formal vol un ta ry organisations or chari ties, which for many years have doubled up as pressure groups i n

the

field of physical handicap, meet the same structural barriers to change, but the status which flows from their long traditions and

their connections with t h e ' esta bl ish m en t ' gi ve them a credibility

and au ra in government circles which more recen t ( an d perhaps more radical) groups of disabled people cannot easily imitate. ( Borsay, 1 986a, p. 1 6 )

This credibility has been based upon h i s t ory and tradition rather than the cl a i m to representativeness of t h ese organisations, whose are

'key decision-makers'

u s ually salaried profess ion al staff who

articulate their own assumptions abou t the needs of d i sa bled people

rather than the needs

of disabled

people as they themselves express

them. Two recent examples of this are the attempts of t h e Govern­ ment with the pu bl i c support of RADAR to abolish the Quota,

esta b lished under the Disabled Person's ( Employment) Act, 1 944,

and the opposition of the Spastics Society to anti-discrimination legislation. Pressure from individual d isa bled people a n d from organisations controlled and run about-turns in both cases.

by

d i sabl ed people forced public

There is one further aspect of the poli ti cs of disability as pressure­ group

activi ty

that needs to

be considered ; that

of minority-group

politics. I n the wake of the Civil Righ ts and Women's Movements in

the U nited States in the

1 960s, i t wa5 s uggested

that disabled people

should seek to articulate and c lai m their rights to full citizenship on the basis of th eir own particular needs as a minority group

(Hahn ,

1 986) . However , there are problems with this approach, for The minority group approach bas ica l ly argues that di s a bl ed

people should

be

bro u g ht into t he

Ame rican poli tica l sy s te m

as

a n other interest group. The structure of decision m ak i ng isn ' t

a ttacked . I ns t ead the idea is to improve the odds that the disabled

will be recognized

as

having legi timate demands . ( Liggett, 1 988,

p. 27 1 ) Using what she calls 'an in terpret i ve a pproach ' , based on

the

work of Foucaul t , Liggett takes her c riticis m s fu'hher than this. Just as earlier, it was argued that profess iona l interventions i n the lives of d is a b led people were s tructured by

certain discursive practices, so,

1 06

THE POLITICS OF DISABLEMENT

she argues, is the politics of disability. Thus the minority group approach

is double-edged because it means enlarging the discursive practi­ ces which participate in the constitution of disa bi l ity . I n other words, the price ofl)ecoming politically active on their own behalf is accepti ng the consequences of defining disability within new perspectives, which have their own priorities and needs. The new perspectives then become involved in disciplining disability. ( L iggett, 1 988, p . 27 1 ) Thus, accepting disabled people as a mi nori t y group also involves the accepting of t he disabled/non-disabled distinction; accepting the 'normalising' society. This has implications for disabled people seeking to ga i n control over their own lives, for in order to participate in their own management disabled people have to participate as disabled. Even among the politically active, the price of being heard is understanding that it is the disabled who are speaking. ( Liggett, 1 988, p. 2 73)

While not disagreei ng with t h is analysis of the politics of disability as mi n o ri ty group activity, Ligget t 's probl ems arise when she suggests a lte rnative political strategies. These strategies involve 're ftection ' and sometimes the acceptance, sometimes the rejection of disabled identities, depending upon the specifics of particular situations. However, s u ch strategies would inevi tably look like special plead­ ing and further, move away from the strategies d isabled people have chosen for the mselves ; that is, the pe rsonal and public affirmation of disabled identities and the demands that disabled people be a ccepted by and integrated into society as they are; tha t is, as disabled people. Thus, the structural position of these organ isa tions , their relation­ s h ip to t h e state, their non-representativeness in terms of the needs and wishes of disabled people and their acceptance of the norma li s ­ ing of society, lead to the inevitable conclusion that for disabled people . . . the chances of immediate and radi ca l reform of social policies are sl i m . ( Borsay, 1 986a, p. 1 9)

EXISTING pOSS I B ILIT I ES

107

It is h ard to disagree wi t h this con cl u s ion when an aly s i n g d is abili t y p ressu re-grou p ac tivi ty from a pl u ra list, corpora tist or minori ty group posi tion , but an a n al ys i s b ased upon the idea of ' new social m oveme n ts ' within late capitalism, ca n lead to very differen t concl usions. However, that is the s u bjec t of the next chapter an d no d isc ussio n of pressure-gro up activity would be com plete without some discussion of the single, most su s tained exa mpl e of pressure­ group activity within the field of d is a b il ity in B ritain; the campaign for a national di s abil i ty income.

A NATIONAL D I SAB I LITY I NCOME The cam pa i g n for a national d isa bil i ty income began

in 1 965 with

the formation of the Disablement I ncome Group by two disa bl ed

housewives. This group provided a major focus for pressure-group activity a n d published plans for a national disability income com ­ prisi n g two elements; a d isablement costs allowance and an income

maintenance sch eme . A decade later, the Disa bili ty Alliance was formed, initially co m pr i s i ng

over fifty

volu n tary organisation s,

which has now grown to over ninety, and they put forward their own p roposals which were b roadl y similar to those of DIG. Recen tly

have updated their plans · ( DIG, 1 987; Disability Allia nc e , 1 987 ) , which are, again broadly s i m i la r , except that the Alliance

both

propos al s plan to i ncorpora te a' se pa ra te, i nd ependent benefit for

those who care for a d isabl ed person, whereas DIG argue that if d is a b l ed people were give n a proper, adequate income, it wo uld be unnecessary to pay carers sep ara te ly . There are difficulties in assessing the success or fa il u re of these p ress u re - grou p activities over the last twenty years, though it has to be said t ha t a national disability income has not yet become a

rea li ty . On the other hand , all of the major political parti es have made pu blic commitments to the establishment of such a scheme

( Disab i l i ty Alliance, 1 987, pp. 4-5) , but have couched these pro­

noun ce men ts with get�u t cl a uses such as 'when economic ci rc u m ­ stances permit' a n d Des pi te

'as

a matter of p rio r i ty ' .

these expressed commitments, n o substantial progress has been made towards the i n troduc ti on of a comprehen si ve d isabil i ty income scheme. The past decade has instead seen a

1 08

THE POLITICS OF DISA BLEM ENT

series of piecemeal changes which, although sometimes useful, have failed to correct the longstanding anomaJies in social security provision for people with disabilities. Furthermore, in a number of vital areas, benefits have been cut and new anomalies created . (Disability Alliance, 1 987, p. 5) ·

So, during the past twenty years, there have been some incremental improvements, usually connected to the performance of the economy, but there have also been reversals. There are a number of reasons why this sustained cam paign has been u nsuccessful. To begin with, both DIG and the Alliance have suffered from the problem already referred to, that as registered charities, they have been unable to campaign in an overt poli tical way. They have therefore found it necessary to divide their organisa­ tions into two component parts in order to retain their charitable status and to continue with political activities. In addition, both organisations have found it necesry to set up information and advisory services in order to steer disabled people through the maze of benefits and to help individuals to receive all the benefits they are entitled to. Finally, they have carried out research to demonstrate , that the financial position of disabled people is considerably worse than that of their able-bodied counterparts. Hence, neither organ­ isation has been able to concentrate solely on pressure-group activities. Both groups can also be cri ticised for taking a somewhat naive view of the political proc�s in that their campaigning is based upon three assumptions; that 1evidence must be produced to show the chronic financial circumstances of disabled people; that proposals for a national disabili'ty income must be properly costed to show that the burden on the economy will be marginal; and that sustained pressure m ust be mounted to hammer these points home to the political decision-makers. This approach has been called 'the social administration approach' and has been criticised for i ts asumptions about consensual values, rational decision-making, its unproblem­ atic view of the state and its failure to acknowledge, let alone consider the role of ideology. Perhaps the only thing that can be said in its favour is that If the empiricist study of consensual solutions to defined social problems did not exist, it would be necessary to inven t it:

1 09

EXISTING POSSIBI LITI ES

democratic welfare capitalism presupposes the tion approach . (Taylor-Goby and Dale,

social administra­

1 98 1 ,

p.

1 5)

What the income approach to d isabil ity fails to understand , m ad e on the s tren gth of particular cases, but in ways whereby the capitalist system i tse lf ben efi ts , reg a rdless of the appearance of consensual values concern­ i ng the need for a national disability income. The establis h m en t of such a scheme i m pli es the paying of one group of people a sufficient i n com e for not working to enable them to have a q ual i ty of l i fe com parable to another group of peo ple who do work. This, of course, has enormous implications for any system which requires its me m bers to produce sufficient goods and services to sustain the material life of the population, and indeed for its id eological underpinnings which emphasises the value of those who do work and denigrates those who do not. In short, the fundamental q ues tion of whether a national d isabili ty income is achievable within capi tal ­ is m , has never ben addresed . This failure to addres fundamental issues h as brought criticism of both DIG and the Dis abi lity Alliance from the more 'populist' organisation , the Union of the Physically Impaired Against Segrega­ tio n (UPIAS) . The two major criticisms of this approach are tha t it concentrates on a sy mptom ( i . e . the poverty of di sabled people) rather than the cause (i.e. the oppress ion of disabled people by society) , and that both organisations have moved away from representi ng disabled people and instead prese n t an 'expert' view of the problem . The logical conclusion to this approach, according to this analysis, is to make th i ngs worse, becauS(: such an approach would be 'expert-led' in that it would require detailed individual assessments. The consequence of this for disabled people would be that therefore, is that political decisions are n o t

We would be requi red to sit alone under observation on one side of the table, wh ile facing us on the o ther side, social administra­ tors would si t togethe.r in panels . We would be passive, n ervo us , deferential, careful not to upset the panel: in short, showing all the psychological attributes commonly associated wi t h disability. I t would b e the social ad mi n i s tra tors who would gain strength, support and confidence from colleagues on the pa ne l . A to ke n number of the more privileged physically impaired people might

1 10

T H E POLITICS OF DISABLEM ENT

be i ncluded , as they are in t h e Alliance. But the whole approach wou ld reinforce the historical and tradi tional si tuation wh ere by

physically impaired people are made dependent u pon the think­

i ng and decisions of others. ( UPIAS, 1 976, p. 1 8) This

debate about ex pe rt or 'mass' repres e n tation in respect of '

'

pressure group activit y has co n t i nued into the 1 980s, with Town­

send ( 1 986) cl ai m ing that these groups can only be 'representative' in certain senses. But what they can do is commit themselves unreservedly to the

interests of m i l l ions of por peo p l e , call representative injustices to public notice and exc hange blow with blow in an expert struggle with the Govern ment over the effects, implications a nd constitu­

tional niceties of policy. (Townsend, 1 986, p. v) But like U PIAS before i t, BCODP denies the claims of such groups

suggests that expert representation can only be counter-productive, and argues that the only way forward i s to ful ly involve disabled people in their own political to be representative i n any sense,

movement. If this a n al ysis is correct, then i t is , perh a ps fortunate that a ,

national disa bility i ncome is likely to be unachievable with in capitalist society. However, it does raise the cash-versus-services debate in respect of p rovi s ion for disabled people. Both left and right agree that the kl(y issue is to give d isa bl ed people choice in respect of services and control ove r their own lives. I n theory, this can then be polarised into a market solution by givi ng people sufficient cash ( i.e. a national d isability i ncdm e ) to purchase their own services, or a state solution by making services and professionals accountable (i.e. anti-discrimination l egis lat i on freedom of information and a strong d isabil i ty movemen t ) . In practice, these solutions are not m u t ual ly exclusive and neither DIG or the A l li a nc e would argue that service d evelop m e n t s were unnecessary , n or would UPIAS arg ue against an adequate income for disabled people if it were part of a wider pa ckage of reforms. The cruci a l issue from a poli tical point of view, however, is whether the tradi tion a l , single-issue pre ss u re-g ro up campaign for a na tio n a l disability i n com e is any l onge r a relevant tactic for the post­ capitalist world to which we are moving. The following chapter will ,

EX ISTING POSS I B I LITI ES

Ill

suggest that the politics of disablement can only be properly understood as part of the new social movemen ts which are part of post-ea pi talist society.

8 The Politics of Disablement New Social Movemen ts

The p receding analys is has suggested that disabled people cannot

look to ei the r the welfare state or traditional political activities to

effect considerable material and soci a l i m prove m ents in th e quality

of

their

live s . The only hope, therefore, is that the

d isa bi l i ty

movement will continue to grow in strength and consequen tly have a subs tan tial i m p ac t

on th e politics of welfare provi s i on . Th i s

c h a pte r will thus consider the emergence of new poli ti ca l activities, which have been c haracte ri sed as ' new soci a l

m ovemen ts ' , and movemen t as part of t his new phenomenon . The structure and ta c tic s of the d isab i l ity movement

discuss the

emergent disability

will be considered , along with the role of the state, before, finally, an

assessment of fu t ure possibilities will be made.

TH E EMERGENCE OF N EW SOC IAL MOVEMENTS Just as earlier social theori sti had been con cer ned to

understand the

far-reaching changes that were occurring as a resu l t of i nd ustrialisa­

tion; so after a pe riod of relative sta bi li ty, from the 1 960s onwards academics have once again begun to address this issue of social

change (Kumar, 1 978) . Changes i n the economy from one driven by consum p tion rather than prod uction , the rise in technology, chang­ ing occupational pa t te rns , socia l d isorgani s a tion affecting fa mi ly and soci al life, i ncreas i ng crime and hooliganism, crises in the wel fare state, the ecological crisis and various ki nds of political unrest have all been features of capitalism in the late twentieth century. This has led some socio logis ts to characterise the end of the twen tieth cen t ury as the era of late capitalism or to herald the coming of post-i ndustrial or post-capi talist society.

1 12

1 13

NEW SOC IAL M OVEM ENTS

This has had an infl uence on the political system and si nce the 1 970s there has ben t he emergence of many new movements compris i ng of n eig hbou r hood groups, environmentalists, the unem­ ployed, welfare reci p i e n ts , mino ri ty groups and ' the generally

( C as tells ,

disenfranchised'

1 978; Touraine,

1 98 1 ; Bogs,

1 986) .

Th ese movements have been seen as constituting the social basis for n ew forms of transformative pol i t ica l action or change. These social movements

are

groun d ed in through the pa rty system targe ted at political decision­

'new' in the sense that t h ey are not

traditional forms of pol i tical participation

or s ingle- iss ue pres u re-gro u p ac ti v i ty makers.

Instead, they a re culturally innovative in that they

underlying s trugg les for

genuine

participatory

are part of the

democracy, social

equality and j ustice, whic h have a ri se n out of ' the crisis in industrial

culture' (Touraine, 1 98 1 ) .

These new social movements are con­

sciou s l y e ngaged in critical evaluation of capi talist society and in the cre ation

of al tern a ti ve models of social organ isa tion at local,

national and international levels , as well as try ing to reconstruct t he

world i d eologically and to create a l terna tive forms of service

provi­ It is in this sense that Touraine ( 1 98 1 ) defines such moveme n ts as 'social l y conftictful ' and 'culturally orien ted forms of behaviour' . Before con sid e ring the rel a tions h i p between the disa bi li ty move­ ment and these new social movem en ts , it is necessary to consider the h is tory of the disa bi li ty movement in Britain itself. Cru cial to this consideration is lihe dis ti nction between organisa t ions for the dis­ abled and organ isation s of disabled people:J In practice, th is centres o n the issue of who controls and ru ns the organisation, and i n real i ty , o rgan i sa tio ns of disab led people are those organisations w he re at least 50 per cent of the management com mi t tee or controlling body must, themselves, be di sa bl ed . These o rga n isa ti ons have em erged in the last twen ty years, but this e mergence must be placed in the con tex t of th e growth of the traditional vol u n tary organisation for the di sa bl ed . s ion .

THE H I STORY OF TH E DISABILITY MOVEM ENT The rise of traditional vol u nta ry

organisations can be l inked to the itself and by the middle of the nineteenth cen tury there were a considerable number of s m a l l societies for the bl i n d in

ri se of ca pi tal is m

1 14

THE POLITICS OF DISABLE M ENT

existence . This led to the es ta b l is hmen t of the Royal Nation al

Insti t u te fo r the Blind ( RNIB) in 1 868, and throu g hou t the latter

organ i sation s grew up for the welfa re of in these organisations s igni fi ed a move away from 'i nd i vi d ual concern for the h a ndi ca p ped' to a concern to promo te the we lfa re of particular gro ups (Topliss, 1 979) , and such grou ps were s u ccessfu l in raising pub l i c awa ren ess a nd e n co u ragi ng the state to take on part i c ula r responsibilities. This trend continued into the twen ti e th century a n d it was not until the esta bli s h m en t of the welfare st a te , with its principle of cradle·to-grave sec uri ty , after the Second World War, that further ch a n ges occurred. Effec tive l y this meant that the state took over com pl e te responsibility for wel fa re provision for disabled people, though in practi ce, the state w as h a ppy to allow voluntary organ i sa ­ tions to continue to p rov id e services, so m e ti mes in pa rtn e rs h i p and sometimes as sole prov i ders . U l ti mately, however, responsibility now lay with the state. There was some concern , at th e time, that thi s m i g h t ad ve rsel y affec t th ese volu n tary o rga nisa ti on s, but, in practice, the state was never a ble to assume total responsibility, and voluntary organisations continued to grow at local an d national half of the centu ry similar

th e deaf and the crippled . The growth

levels, often with state

support.

affluence of the postwar years, coupled with l egislat ive ch an ges and increases in service p rovi s ion , i t soon became clear tha t disabled people, among other groups, were n o t hav i ng all their needs met and, often, even those needs that were acknowledged , were being met in inappropri a .e or oppressi ve ways. The traditional organisations, locked into a partnership a pproach with the state, were u n a bl e -to do anything about t h is , and disillusion set in , leading to the formation of s i ngle-iss u e groups like DIG . Further, as has already ben d isc ussed , this disillusion son spread to the new s i ngl e- iss ue pressure groups, and more and more disabled peopl e came to realise that, if the y were going to improve the q uality of th ei r own lives, they had to do it t h em selves, prompting th e rise of sel f- hel p and pop ulis t forms of organ is a tion (Ol i ver, 1 984) . Such groups woul d not have emerged had t h e existing volu n t ary organi sa tions been adequately articulating and represen ti n g the needs and wishes of disab l ed people. Hence, these new l y - e me rging groups were critical of the traditional groups on a number of gro u n d s . A maj or thrust of this criticism of organisations run by non­ disa bled people is that they operate wi thi n a framework which Des pi te the

1 15

NEW SOC IAL MOVEMENTS

assumes that disabled people cannot take control of their own lives an d , therefore , req u ire the 'charitable' assistance of well-meaning p rofessionals , voluntary workers or politicians ( Ba tty e , 1 96; C rine,

1 982; BCODP, 1 988) .

. Closely all i ed to this c ri ti ci s m is the view that peopl e who run organisations for rather than of disabled people operate within a medical rather tha n a social model of disability w h i ch locates the problems faced by disabled people within the individ ual rather than

being contingent upon social organisation (Oli v e r , 1 983) . 1 FinaUy,

these groups are criticised on t he grou nds of the interests they

act ual ly serve,

whether they be of the

the profesional staff or the person al

viduals through the honours system .

tor,

the careers of aggrandisement of key indi­ A ccordi ng to one commenta­ establishment,

these key individuals

can

get sucked into the ol d

boy

network, even if they

are

women,

( and few of the big- ti me rs are) and rapi d ly get out of touch, for

example, with life i n sid e the run-down council estates and the m ental h and ic ap hosp i t al s . As they get more powerful, they get more out of touch . Life loks d iffere n t from the inside of a BMW. (Bra nd on , 1 988, p. 27) There were also

a n u m be r of external influences on th e d i sa b i l i ty the similar rise of move me n ts of black people and women, and the passage of anti-discrimination legislation in movem en t, noticea bly

these areas. Similarly, in some other countries, such legislation had

ben pas in respect of disabled people, but in Britain, at least, the

Govern men t set its face agai nst such an approach (Oliver,

1 985) .

There are two other events which gave further impetus to the disability movement, and helped to give it a national and i n te rn a tion al le vels . The

sense of cohesiveness at

first of t h ese was the l!!tiJ� Nations plan to desi gn ate 1 98 1

I nternational Year for t h e Disabled. I ts very ti tl e reinforced the idea

that disabled people should h ave thi ngs done for them

and it was that the initiative became the I n te rna ti on al Year of Disabled People . That did not stop many of the planned events from rein forci ng the charitable images of dis­ abled people, but disabled people set th e m selves the task of ex ploit ­ ing the opportunity IYDP offered them and formed their own national, u m bre ll a organisation, the British Council of Org anisations only after considerable lo bby ing

1 16

TH E POLITICS OF DISABLEM ENT

of Disabled People, which has gone from strength to strength since then, and now claims a membership of nearly 50 independent organisations representing over I 00 00 disabled people nationally. The second event was the plan of Rehabilitation International (an organisation for the disabled) to publish its own Charter on Disability, the central aim of which was To take all necessary steps to ensure the fullest possible integra­ tion of an equal participation by disabled people in all aspects of the life of their communities. At the very same conference where this Charter was being discussed, the organisation turned down a proposal from a group of disabled people that Rehabilitation l n �ernational should, itself, become an organisation of disabled people, by making sure that it was controlled by disabled people themselves. So, while integration and participation could be recommended to everyone else, it was not for Rehabilita­ tion International i tself. Perhaps it was fortunate that the organisa­ tion took this blinkered view, for the decision led directly to the formation ofDisabled Peoples' International (DPI ) , the international • eq uivalent of BCODP. One final point needs to be made in respect of the history of the disability movement in Britain, and that concerns the coming to power of the Thatcher Government in 1 979. This Government was committed to reducing public expenditure, minimising the role of the state and privatising a whole range of services. Throughout the eighties, this has had profound implications for disabled people; inadeq uate existing�'services have become even more inadequate, specific political goals like a national disability income and anti­ discrimination legislation are further away than ever, and some rights and benefits have been removed altogether. The traditional disability organisations have been able to do little about this, and this has reinforced the message to the disability movement that the ' only thing it can do is to 'organise' ( Ryan, 1 988) . Hence for the first time, in 1 988 disabled people in this country organised their own opposition to the Social Security Act ( 1 986) and took to the s treets in London and other big cities as a way of registering their protests. This brief history of the rise of disability organisations can be summarised in the following way.

N EW SOC IAL MOVEMENTS

1 17

A TY POLOGY OF D I SAB I L I TY ORGAN ISATIO NS Earlier

( Olive r, 1 984) , a typology of d isab i l i ty organisat i ons was a key to their historical development. W i th some amendments and addi­ tion s , the following is intended to prov i de a profi le of such o rga n is a­ tions and their historical developm en t .

constru cted to describe their range and scope and to provide

Partnership/patronage Organ isations for disabled people;

cha ri ta bl e bodies; provision of in conj u nc tion with statutory agencies) ; cons ulta ti ve and ad v isory role for p rofession al agencies; Exam ples : RADAR, RN I B, S pas t i cs Soc ie ty , J oi nt Committee on M ob i l ity . services (often

2

Economic/parliamentarian

Primarily organisations for disabl ed peopl e; single issue; parl i amen­

tary l obbying a nd resea rc h ( m a i n ly on

economic issues); legal i sti c bodies; may or may not be party pol i tical . Exam ples: DIG, Disabil­ i ty Al l i anc e (part of the 'poverty lobby' associated wi th Child Poverty Action Group, Fabian Soci e ty , etc.) . 3

Consumerist/self-help

Organisations of disabled people; self-help proj ec ts and other activi­

ties aimed at problem-solving and providing se rvi ces to meet self­ defined n eed s of me m be rs ; may or may not be political/campaigning gro ups also; may work in colla bora tion with local or nation a l statutory and/or volu n tary agenci es . Exa m ples : S pi na l Injuries Association, Derbys h i re Centre for I n tegra ted Liv i ng .

4

Populist/activist

Organisations of disabled people; political actiVIst groups; often an tagonistic to the partnership approach; primary activities focused on 'em p owerment', personal a nd /o r political; collec tive action and con sci ous ness raising. E x am ple s : U PIAS, Sisters aga i ns t Disable­ ment, British Deaf Associ at i on .

1 18

THE POLITICS OF DISABLEMENT

Umbrellalco-ordiMting

5

Organisations of disabled peopl e; collective grou pings of organ i sa­ t ion s co mpris i ng con s ume ri st an d /or pop ulist groups; rej ect ing of divisions within the disabled population based upon clinical condi­ tion, fu n ct ional limitation

or

age ; may function at local, national or

inte rn a ti on al levels; primarily political organisations aiming to facilitate the empowerment

of disabled people by a variety of means.

Examples: Greenwich Association ofDisabled People, BCODP, DPI . There

n um be r of points

are a

need to

that

be made about this

typology. First, it is i ntended to be flexi ble and descriptive and will

not necessari ly fit all orga n isations conveniently within it. Secondly, it does provi de

tion 1 bei ng

a trajectory of historical developmen t, with organisa­

the earliest and organisation 5 being the newest on the

scene. Finally, and most im portan tly , m ovemen t

as

a

new

in referring

to

the disability 3-5 are

social movement, only organ i sa ti ons

con tained wi thin this definition.

It is to the claim that these

organisa tion s can be called a new

social

now

needs

to

be

movement that attention

given .

THE DI SAB I LITY MOVEMENT

AS A NEW SOCIAL

MOVEMENT

There

are

considered

foqr as

characteristics the

relevant to

of new

social

m ovem e n ts that can be

d isabi l i t y movement as a new social

first of t hese is that they tend to be located at the the traditional political sys tem and in fact, some tim es

movemen t. The

peri phery of

they are d e li be ra te ly marginalised (Hardin, 1 982 ) . lbis is certainly true of the d isabi l i ty movement, which does not relationship to the state

as

have the

do the organ isa t ion s for

the same

disabled ,

ei th er in ter m s of consultation procedures, lobbying or, indeed, resourcing. For example, RADAR, the um bre ll a 'organisation for', is usually given a grant of £225 00 per year by the DHSS, whereas its 'organisation of coun t erpart , BCODP is lucky to get £ 1 0 00 per year. However, this does n ot mean

that

the political significance and

m e a ni ng of the d i sabil i ty movement can be ta k en to be marginal and

neither can its tra nsfor ma tive

potential .

New social

move m en ts

in

NEW SOCIAL MOVEMENTS general do have great significance and m ean i ng in t he

1 19

changing

po litica l circumstances tha t are currently occur ri ng .

c learly focused around what have come to be termed as 'new social move­ m en ts' . . . The new social movements are characterised by not only a grea t e r wiUingnes to employ a wide variety of fo r ms of poli tical action, but also by a n underl y i n g orientation towards political values that have widespread ramifications. In part icul ar their u nderlyi ng scheme of values stress the i m portan ce of po l i t i ­ cal participati o n and person a l self-actualisation in wa ys that have i mplicati o ns for the forms that political behaviour takes. ( Weale, 1 98, pp. 1-2) The changing n a tu re of poli tical interests is most

Ibis definition a ccu ra tel y fits in with the emergence of self-help/ consumerist groups within the di sa bi li ty movement, both in terms of the importance s uch groups place on personal self-actualisation, and their wiUingness to follow p ro-acti ve strategies t o wa rds what, ulti­ mately, become pol itical goals.

Sel f- he lp groups were slow to develop . . . but they have flourished and have become a powerful s ou rce of mutual support, education and action among people affected by particular health concerns o r disabilities . . . while learn i ng and working together, disabled people can combine their power to infl uence social and pol i ti cal decisions that affect their l ives . ( C rewe and Zola, 1 983, pp. xi i i-xiv)

However, the devel o pmen t of sel f- help strategies can i ni tia l l y be purely practical , rather t ha n expli ci tl y pol i tica l . One case s t u dy highl ights the way i n wh i ch t h e self- he lp approach is often a response to the perceived failings in profesi on al s ervi ce provision. Thus while the initial impetus was to en cou rage disabled people ' to sol v e their problems themselves and not have them solved for them ' , the re w as also a further a i m which was 'to id en ti fy the needs o f the me mbe rs hip as a whole and articulate them, both to statutory a ge ncies and political pa�ties at both a local a n d a national level' (O iiver a nd Hasler, 1 98 7, p. 1 1 6) . H ence , The s el f- he lp movement is . . . but one part of the s truggle. It is

a

1 20

THE POLITICS OF DISABLEMENT

pre-requisite for ch a nge , but nei ther the sol e nor the sufcient aven ue . We must deal as m u ch with social arrangements as wit h self-conceptions; one, in fact, reinforces the other. ( Zola, 1 979, p . 455)

This link between the person al and the feature of these new social movem en ts : To varying degrees

and i n

poli tical i s

often an i n tegral

varying ways the new movements also

seek to connect the personal (or cultural) and political realms , or at least th ey raise psychological issues that were often s u b m erged

or igno red . . . (Boggs , 1 986, p . 5 1 ) specific form of self-help, more or less u niq ue to the disa bi l i ty perhaps, the clearest practical illustration of the ways in which the disability movement corresponds with gen eral definitions of new movements, can be found in the i n creasing numbers of C e ntres for Independ en t and I n tegrated Living (C I Ls) being esta blis hed both in th e U K a n d in other countries, including the United States, A us tra l i a , Canada and japa n . C I Ls rep res e n t both an attempt to achiev e self-actualisation, and a form of d i rect action aimed at creating new solutions to problems defined by disabled people themselves (Oiiver, 1 987b) . The second characteristic of new social movements is that they offer a critica l evaluation of society . . . as part of 'a conflict between a d eclin in g but still vigorous system of domination and newly em e rgen t fo� of opposition' (Bogs, 1 986, p. 4) . I deol ogi cal ly , the I n depe nd en t Livi ng Movement which led to the establishment of t he first C I Ls in California and other parts of the United States in the late 1 960s, also represents an explicit critique of prevailing social st r uct ures and the position of disabled people within them. The ration al e behind the I ndependent Living Movement was that the obstacles to self-actualisation were perceived to be the result of Jiving in hostile physical and social environments and the fact th a t � h a t services were provided, were restricting ra ther than enabl ing . The movement set about attempting to ch a nge this situation , firstly by red efini n g the p roble m in this way and then by settin g up alternative kinds of service-provision u nder the co n trol of disabled people themselves. The si t ua tion in the U ni ted States, where C I Ls emerged , is A

movemen t and,

121

NEW SOCIAL MOVEMENTS

different from that in Britain in three i mportant respects. Firstly , the US has a trad i ti on of seeing som e p robl ems as h u man ri gh ts issues, both in terms of constitutional history and the influence of the civil

rights movemen t . Secondly , there were very few statutory services available to d'asabled people in America and thirdly, th ere was no large, organised voluntary sector of organisations for the disabled .

In Britain , there was no human rights tradi tion, though there were many state services and a la rge vol u n tary sector, both of w h ic h had

proved to

be inadequate.

Hence, the tactics ofC I I. in

Britai n had

to

reflect this different con tex t and the issue here was more concerned with controlling services than creating them . Thus the change of name from

cen tres for independent to i n tegrated living and the

ch a n ge in tactics also.

C I Ls are poised at the fulcrum of the contemporary s truggl e to t i lt the balance of h is to ry in favour of a fairer and more eq uitable future for disabled people. Th e De r bys h i re Coalition argues t h a t the key to social change is t h e active participation of peopl e who

are themselves disabled and that CII.

.

.

.

can exert a beneficial

influence on the existing se rvice i nfrastructure in Britain. ( Davis , 1 983, p. 1 6)

More generaly, this feature of the I ndependent Living Movement political stra tegy , prefigures the increasingl y dom i nant view that disability is not merdy socially co ns t ructed , bu t soci a ll y cru ted as a form of institutionalised social oppresion like i ns t itu t ional ised as a

racism or sexism (Sutherland , 1 98 1 ; A b be rl ey , 1 987) . The I ndepen­

dent Living Movement by no means circumscribes the disability move ment as a whol e . It is, however, one of its principal d i m ensio n s , both as an u n d e rlyin g ideology and a practical political strategy.

Furthermore, its development illustrates the influence on t he disa­ bility movement of other contemporary movements, su ch as civil rights, consumerism, self-hdp, demedicalisation/self-care, deinstitutionalisation . The signifi ca n ce of i nd e pend en t living

ca nn o t

be understood apart

from t he contributions of t hese other movements. ( De J on g , 1 983, p. 5) Th e si gn ifica n ce of these other social movements is that they

are

1 22

THE POLITICS

taken as evidence of the

OF

DISABLEMENT

emergence of a 'post-materialist paradigm ' .

denominator a mongst these moveme n ts, i ncl u di n g the d isabili ty movement, is that they typ ically emerge as a response to the perceived fa i lure of existing politi cal institutions and s trategies to achieve the objectives of a particular social group as they themselves defi ne them. This has be en particularly true in the United States where the civil rights tradition has profoundly in­

T h e common

fluenced the disability movement.

1

The civil righ ts movement has had an effect not on ly on the sec uring of cert ai n rights but also on the manne r in which these righ ts have been secured. When traditional legal channels have been exh a u s ted , disabled peop le have learned to e mploy other techniques of social p rotes t . (De Jong, 1 983, p. 1 2)

Lacking such a t rad ition in Britain, and not even having basic rights enshrined i n law through anti-discrimination legisla tion , the disability move m en t in this country has been more circumspect in terms of tactics, although the lessons of the American movement have been noted and there have been a few organ ised boycotts, si t- ins and street demonstrations. The third characteristic of new social movements resulting from fundamental c hanges in the constitution of the political agenda has · been an increa$ing predominance of . . . 'post-materialist' or 'post­ acquisitive' values over those that have to do with i ncome, satisfaction of mat«Erial need s a nd soci al security . (Otfe, 1980, p. 12)

While i t

is certainly true that the disability movement i s concerned issues rela t ing to the quality of life of d isa bl ed people, it is also true that many disabled peop le still face material deprivation as well as soci a l disadvantage and the movement is cen tra l l y concerned with this. It would be i n acc urate to at tempt to characterise th e disability movem e n t as s temm ing from a middle-class and disabled elite co n cerned o nly with their own quality of life , as WiUiams ( 1983) at te m pts to do in his c ritique of the I ndepend en t Living Movement. A fi n al characteristic of new social movements is that they with

1 23

NEW SOC I A L MOVEMENTS

sometimes tend to focus on issues that cross na t ional

boundaries,

and hence they become internationalist . This is certainly true of the disabili ty movemen t and at DPI's

objec t ives and strategies

Cong ress, the

� �nd the

movement

were c l earl y defined around the central issues of empowerment and

of d i sab led people ac ti ng collectively to

achieve collective goals.

It

was noted b y th e C ongress t h a t poli tical ac tion aimed at govern me n tal bodies - or at private groups or individuals, was more likely to produce results than through a legislative or cons ti tuti on al route. Countries which had pas legislation favourable to d isabled peopl e, did no t necessarily

find that i mproved condi tions followed - or that disabled people had more control over their l ives as a result. The prereq uisite for successful action lay in the proper organ isa tion of di sab led persons' groups,

a nd the development of a high l e ve l of p u b l i c d isabili ty issues . . . This did not n ecesarily mean that disabled people's o rga nisa tions were i n an an tagon i st ic

awareness of

relationship to established organisations which were not con·

d isabled people. Bu t it did mean that ou r own voice of disabled people and our needs. (DPI, 1 986, p. 2 1 ) trolled by

organisations shou ld asert that they were the true and valid

The discussion so far has indicated that the

d isab i l ity movement can

be considered as part of new social movemen ts generall y . The crucial q uestion this therefore raises, is wh a t

po li ti ca l ac tion i n

does it

mean for

genera l and the possibility of im provi ng t he

q ual i t y of life for disabled people in particular?

N EW DIRECTIONS FOR THE FUTURE Thus far, attempts to

consider the meaning and significance of these gene rally (Bog, 1 986; Laclau and Mouffe, 1 985) have usually taken place within a framework d e ri ved from the work of Gramsci ( 1 97 t ) . Within this framework there are three discrete areas that need to be consi de red ; the economy, the s t a te and new social movements

civil society, all

given

a sense of unity by the concept of hege m ony.

For Gramsci, the economy referred to the

production; the state consisted of a ll

dominant mode of

state-funded institutions

in-

1 24

TH E POLITICS OF DI SAB LEMENT

eludi ng

the political, term civil society

the bureaucratic a n d

the means of viole nce ; the

connotes the other organizations in a soci al formation which are the processes of material p rod uc tion in the econom y , nor part of state funded organizations, but w h ich are relatively long- l as t i ng institutions supported and run by people ou tside of the other two major spheres. (Bocock, 1 987, pp . 33-4) nei ther part of

The im p ortan ce of the concept of hegemony in Gramsci, was that claimed tha t dominance, or leaders hip of all the people , could n eve r be s imply reduced to dominance in the economic s phe re, but could be established within the state or civi l society. Thus, poli ti cs , not economics , can have a central role in the establishment of h egemon y , and within Gramsci's fram ework, this politics can take p l ace both within the state and ci vi l society, al tho ugh it

The borderline between state and civil soci e ty is a constantly shifting one and one which has to be negotiated, m ain tain ed and con t i n ualy re-adjusted ove r time. (Bocock, 1 987, p. 34) To ses

put the matter simply , poli tical activity within the state compri­ trad i tional party politics and corpora tis t pressure group activi­

ties; political activity within civil society com prises the activities of t h e new social movem e nts . The crucial iss u e for these new social move men ts th,us becomes one of how far they can effect political and social change, either by shifting power across the borderline and away from state politi�l institutions, or by exerti ng greater and grea ter external i n fl u e n ce on these existing institutions. It is within this framework that consideration can be given to the si gni fican ce of the d isa bili ty movement as a new social movemen t . The role of the economy has al read y ben considered and somew ha t pessimistic conclusions arrived at. However, there is one aspect of economic development tha t needs to be considered at this point, and that is the role and potential of new tech nology , before givi n g consideration to the state, civil socie ty and the posibili ti es of d evelopi n g counter-hegemonic political structures. A major factor to be consid ered in the d evelopmen t of post­ capitalist soci e ty is the influence of new tech nological developmen ts on the economic, social and material needs of disabled people.

1 25

N EW SOCIAL M OVEM ENTS

Finke l s tei n ( 1 980) , while not specifically calli ng Phase 3 of his model clear where both the p roble m and the solution

pos t cap italism , is -

lies.

D isa bled peo pl e , also, no less than able-bodied people, need to express t h ei r essen tial human nat u re by mou l d i ng the social and ma terial environ men t and so in fl u e n ce the course of history . What stands in the way, (at a time w hen the material and technological basi s for solving the h u man and material needs of d isa bl ed people have mostly been solved ) , is the dominance of ph ase 2 attitudes and relationships. Such a tti t udes take society and, indeed, the d epend ency relationship as give n . ( Finkels tein , 1 980, p. 39)

But not all commentators see the issue as one of outdated tud es , moulding technology in partic ul a r d i rec ti ons , but point to the fact that technology i tself will not necesarily produce or equally distribute its benefits ( I II i ch , 1 973; Habermas, 1 97 1 ) . These techno­ logical developments have not been uni versa l l y welcomed in terms of health care in general ( Reiser, 1 978; Taylor, 1 979) no r disability in particular (Oiiver, 1 978) . Zola, writing from his own expe rie n ce a tti

has suggested that

can do too much for those of us with d isa bi li ti es The com ple ten ess that they rob us of our integrity by making us feel useless. ( Zola, 1 982, p. 395)

Tech n ology

.

machines that tec h nology creates ma y achieve such

And he applies thi s an a lysis not j ust to the development of machines, gadge ts and prostheses, but also to what he calls the over­ '

technicalization of care'. To be handJed by a by a person, 1 982 , p .

can

machine or animal, where once I was handled

only be i n valid ati n g of me as

a

person . ( Zola,

396)

terms of i ts effects on the work system and the material it m ay be oppressive rather than liberat­ ing. In a review of ch a n ges in the work system in what he calls 'post­ i nd us tri al society' , Comes ( 1 98) discusses both the opti mistic and pessimistic views of th e effects of new technology on the work Further, in

and social en vi ron me nts

"

,

THE POLITICS OF DISABLEM ENT

1 26

opportumt1es of disabled people. He suggests that s u c h develop­ men ts can be viewed optimistically, New jobs and new opportunities to organise and locate work on an entirely different basis using new technologies are inc reas ingly being perce ived as offering even more gro u nd s for optimis m . This is becaus e such new jobs, in which physical req u i reme n ts are

replaced by e lec t ron i c skill, streng th and pre ci sion are parti cu lar ly sui table for people with d i sab i l i ti es , and beca use new develop­ ments in comm u n ications have increased opportuni ties for home­ based

em ploy m en t . ( Co mes , 1 988, p. 1 5)

But he then sounds a cau tionary note, suggesting that many disabled peop l e may not have the ed ucational o ppo r t uni ti es or training pot en tial to take advantage of such opport u nities . Further,

the new skills th a t will be req u i red to master new technology may

require a degree of confidence and independent thinking that many d isabled people c u rrently lack. Finally, he suggests that many disabled peop l e are already falli ng behind in the mastery of these skills 'because of problems of access, mobili ty, finance and discrimi­ natory atti tudes' (Comes,

1 988) .

He agrees wi th F i n kels te in 's ( 1 980) analysis, that the problem is that while we are in phase 3 in terms of economic and tech n ologica l developments, we, no ne theless , remain locked into ph ase 2 atti­ t u des , or in Comes' terms, t h at 'existing pol ic ies, programmes, attitudes a nd expectations may be too de pe nden t on the institutional

arrangements, values and ideal s of an ind ustrial society '

(Comes ,

1 988) . And he goes on to locate the solution as bei ng in the hands of the d i s a bili ty movement itself. Their successful pa rti c ipation in all spheres of l i fe within post­ - economic, cultural and pol i tica l - will depend extent to which they themselves and their suppor­ ters can lay claim to and exercise t ha t right not only during the

i nd ustrial soci e ty

grea tly on th e

transition from school to work but th ro u g hou t their lifetimes. (Comes,

1 988, p. 1 7)

If then, the d i s ab il ity movement is cen t ra l to ens uri ng that tech nology is used to l i berate rather than further oppress d i sa b l ed peop l e , then a clear u n d ers ta nd i ng of its double-edged nature needs

1 27

NEW SOCIAL MOVEMENTS to be developed within the movement. A start i n

this d irection

has

been made by recogn i si n g that the men tali ty which allows technology

to be used for evil purposes is th e very same me n tali ty which

faci l ita tes the oppresion (and indeed, even the crea ti on ) of disabled

people . Rele n tJes ly , the connection between d isa bili ty and the bomb

becomes clear. The me n tal i ty that made Ch eshi re a complia nt

partici pan t in the mass crea tion of disa bility at Hiroshima is the of the mass incarceration of d i sa b l ed people in a chain of segregated institu­ tions. I n the first case he went over the tops of the heads of disabled peopl e in a B29 bomber, in the second he went over our heads in the name of ch ari ty . I n creasi n gly , over the years, both actions have come to attract our abhorrence . . . we have to find th e strength to I NSIST th at our rep resen tati ve organ is a tion s are sa me mentality which made him the instigator

fully involved in decisions about the dismaotJing of disabled apartheid. And we have to add our instant voice to the clamour for

world tlisarml - with the aim of removing for all time, this particular and horrifYing cause of unnecessary disability. ( Dav is , l 986b., p. 3) But, in order to ch all e nge what might be caled a tti t ud es (Finkel­

stein, Comes) , mentality (Davis) or more properly, in the context of this analysis, ideology, then clearly the disability movement must

work out an app ropri ate political strategy. As has already been indi cated , this cannot be t h rough traditional political participation

in parties or pressure groups, but has to be addres in terms of the

rela tionship between the di sa bility movement and the state, the second element within Gramsci's ( 1 97 1 ) framework.

The re l a tionshi ps of these new social movements in general to the

s tate h ave been considered i n som e detail and raise crucial issues of political strategy.

If social move men t s carry forw ard a revol t of ci v i l society against

the state - and thus remain la rgel y outside the bou rgeois public

sphe re - they typi cal ly have failed to engage th e state system

as

part of a larger democratizing project . In the absence of a

co h e re n t approach to the state, political strategy is rend e red abstract and i m po te n t .

(Bog, 1 986,

p. 56-7)

TH E POLITICS OF DISABLEMENT

1 28

o the r hand , to engage in an uncri tical re la ti onsh i p to the to risk a t best, i nco rporation and a bsorpt ion , and at worst, isolation and m arginalis a tion a nd perha ps , u l ti m a tel y , obl ivion . Leaving aside the question of whether the s ta te represe n ts spec i fi c interests or is relatively autonomous, the d isabi li ty movement has to decide how it wishes such a relationship to develop . Should it settle for incorporation into state activities with the prospect of piecemeal gains in social policy and legis la tion with the risks that represen ta­ tions to political institutions wil l be ignored or manipulated? Or, should it remain separate fro m the sta te and concentrate on consciou sness - ra isi ng act ivi t ies lead ing to long- term c h anges in poli cy and practice and the empowerment of disa b led people, with the attendant risks that the movement may be m argi nali sed or On the

state , is

isolated?

In pract i ce , it cannot be a m a tte r of choosing

on e

or the

ot h e r

of

these posi t ions , for the disability movement m u s t d eve lop a relation­ so

and play a policy and profess i ona l practice. On the other hand, it must remain i ndepende n t of the state to en su re that the changes that take pl ace do not ulti m a tel y re O ect t he es t a blis h m en t • view and re p roduce paternalistic and dependency-creating services , but are based upon ch a n ging and dynam ic concep t ions of d i sa bi l i ty as articulated by disabled people the mselves . Such is the nature of a crucial issue fac i ng the disability movement ove r the next few years and the complexities of the task should not be underestimated . In order,• however, to develop an appropriate relationship with the state, all new social movements, i ncl u d i ng th e d i sa bili ty move­ ship with the s ta te

role in

that it can secure proper resources

changing social

ment, must establish..a firm

basis within civil society.

The i mpo r ta n t point is that these m ove me n ts , as e me rge n t, broad-based agencies of social change, are situated pr i mari l y within civil socie ty rather than the conve n tion a l

realm of plu ral ist

democracy . Further, the tendency toward convergence

movements ( for ex a m p le , fem inism and the g i v es

peace

of some

move me n t)

them a radical poten ti al far greater than the s um of

particular groups. Even tho ugh their capacit y to overthrow any

power s t r uc ture is still m i n i m al , they have begun

to introd uce a new l ang u age of cri ti ca l discourse that departs profoundly from the theory and practice of conventional politics. ( Boggs, 1 986, p. 22)

N EW SOC IAL MOVEMENTS

Thus,

1 29

because these move men ts are developing within the do not risk i nco rpora tion into

sepa rate sphere of civil society, t hey

the s tate , nor indeed, do they need to follow a

political

agenda or

strategy set by the state. Hence, they can engage in con sciou s n ess­ raising activities, demonstrations, sit-ins and other forms of political

activity within civil society . Further, they can develop links with each

other

so

that their potential

as

a whole is greater than that of their

con s ti tu en t parts . F i nall y , t h e rel a tionsh i p to orga nised labour needs

to be renegotiated , which means that l abour will have 'to confront its

own legacy of rac is m ,

sexism

and national cha u vi n is m ' because

The complex rel a t ion s h ip between labour and

social

movements,

clas and politics - not to mention the recomposition of the work

fo rce

itself - invalidates any

sch eme that asigns to labour

a ( Boggs,

hegemonic or pri vi le ged role in social transformation .

1 986, p. 233) As far as the d isa bi l ity

d evel opm ent have

movement is

ing d isability as

poss ib i l i ti es of

wi t hin

concerned , its growth and

the realm of c i vil society. It has used consciousness and se l f-af rma t ion as a pol i ti ca l tactic and has begun to be invol ved in political activities such as d emon s tra ti ons and sit­ ins ou tside the realm of s tate political activities. 'By recon ce p t u a lis­

been

social restriction or oppression , it has opened up the collaborating or coo pera tin g with other socia lly

restricted or oppressed groups.;J

B ut

it has abo crossed the borderline between the state

and

c iv i l

society by developing its own service provision, sometimes in

conflict and sometimes in cooperation with state profesionals, and

has, on occasions, engaged in interest represe ntation within the state

political appa rat us . The i ss u e of crossing the borderline

to

the

economy and es ta blishing links with organised l abour , however, has yet to be properly addres . It could be said that as well

as

overooming i ts racism , sexism and chauvinism, organised labour has to overcome its disablism

too. While the labour movement has been Quota, establ i s hed by the Disabled Person 's ( E m ploy m e n t ) Ac t, 1 944, it !t� �n disa b l i st in its resis tance to ch a nging work- practices to facili ta te the em­ of disabled people and to rewriting job specifications to enable disabled people to get the kind of personal sup port they need to live better lives in bo t h the com munity and residential care. broadly support i ve in wishing to retain the

1 30

THE POLITICS OF DISABLEMENT

COUNTER-HEGEMONIC POLITICS

The concept of hegemony is a unifying one in that it contextualises the relationships between the economy, the state and civil society . While hegemony may be exercised in all three realms, I n any given historical situation, hegemony is only going to be found as the partial exercise of leadership of the dominant class, or alliance of clas fractions, in some of these spheres but not in all of them equally successfully at aU times. ( Bocock , 1 986, p. 94)

And this, of course, raises the possibility of counter-hegemonic tendencies emanating from civil society rather than from traditional political institutions or changes within the economy, for Contemporary social movements are thus hardly marginal ex­

pressions of protest but are situated within the unfolding contra­ dictions of a rapidly changing industrial order, as part of the historic attempts to secure genuine democracy, social equality, and peaceful international relations against the imperatives of exploitation and domination . ( Bogs, 1 986, p. 3) And it is not unrealistic to suggest that only when peace, democracy and equality have been secured, that the social restrictions and oppressions associated with disability can be eradicated. This chapter has �mggested that the disability movement has a central role to play in the eradication of these restrictions and oppressions as part of the emergent f!ew social movements. I t has to be admitted that nowhere in the world have these new movements been succesful in overturning the slJtus qw. Their significance has ben in placing new issues on to the political agenda, in presenting old issues in new forms and indeed, in opening up n ew areas and arenas of political discourse. It is their counter­ hegemonic potential , not their actual achievements, that are signi­ ficant in late capitalism. To say that the new movements have

a

counter-hegemonic

poten tial is also to suggest that they have emerged in opposition

(at least partially) to those ideologies that legitimate the power

structure; technological rationality, nationalism, competitive indi-

NEW

SOCIAL

MOVEMENTS

131

vidualism, and , of course, racism and sexism. (Boggs, 1 986, p. 243) Perhaps, after reading this bok, d isa blism can be placed at the end of the above quote, for a ce n tral theme of it has been that disability merits sociological analysis and demystification in precisely the same way as all the other 'isms. Unfortunately, up to now the sociology of disability is both theoretically backward and a hi nd rance rather than a help to disabled people. In par,ticular, it has ignored the advances made in the last 15 years in the study of sexual and racial eq u ali ty and reproduces in the study of disa­ bi li ty p aral lel deficiencies to those found in what is now sen by man y as racist and sexist sociology. (Abberley, 1 987, pp. H) In eradicati n g the social restrictions and oppressions of disability , both the disability movement and non-disablist sociology have a part to piay.

Postscript: The Wind is Blowing

There is a sense in which this bok can be read both pessimistically and optimistically. The argument suggests that the dominant view of disabili ty as an individual, basic, medical problem is created by the prod uctive forces, material condi tions and social relations of capitalism. The c h a nces of transcendi ng these forces, conditions and relations are therefore intrinsically bound up with the possibilities of ca p i talis m i tself being transcended. These possibilities do not appear to be likely to materialise in the foreseeable future, for, even allowing the idea of post-capitalist society, such a socie ty appears more as an exte nsion of capitalist forces, conditions and relations than as a transition on the road to socialism. However, disability does not appear as an individual, tragic and medical problem in all societies that have existed historicaly nor in some that exist currently. So it may be th at the material conditions and social �elations of disability can be improved without wai ting upon the possibility of the transcending of the prod uctive forces of capi talism itself. Thus. there are grounds for optimism from this , more limited view. The most i mportant fac tor in this optimism is the rise of a strong, vibrant and inte rnational disability movement within a decade. But there are other grounds for optimism also. The sheer size of the disabili ty problem ( Marti n et al. , 1 988) with its associated appalling material conditions ( Martin and White, 1 98) will inevitably mean that some political action will be taken. The criticism of existing service provision that are emerging from even establishment organisations ( Fiedler, 1 988; Beardshaw, 1 988) should ensure that changes take place therein . The contradictions that many profes­ sional groups, including the medical profesion (Royal College of Physicians, 1 986) , are experiencing in relation to their obligations to 1 32

•

POSTSCRI PT

1 33

their employers and th ei r d uties to their clients, mean that profes­ sional p rac tice is being re-evaluated . Finally, the appearance of many more disabled peop le on the stree ts and in general social intercourse is beginning to change p ublic consciousness about disability

0

Marx himself knew that

the course of general development was to above have all occurred at a particular historical point, making c h a nge inevitable. Th e wind is indeed blowing; the direction that wind takes will depend upon more than just disabled people themselves. influenced by 'accidents'.

The 'accidents' referred

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B I BLIOGRAPHY Weber, M. ( 1 968) . Economy and

1 45

SociLlJ, 3 vols (New York:

Bed m i nster

Press) . Wilding, P . ( 1 982) .

Proftssimull Power a nd Socia l Welfare ( London : Routledge & Kegan Paul) . Wilkin, D. ( 1 98 7 ) . 'Conceptual Problems in lkpendency Resea rc h , Social Scintu and Medicine, Vol . 24, no. 1 0. Williams, G. ( 1 983 ) . 'The Movement for I ndependent Living: An Evaluation and Critique' , Social Science and MediciJUJ, Vol. 1 7, no. 1 5 . Williams, P . , and Rosenberg, J. ( eds) ( 1 980) . Social &ientists and the '

Plt.Jsically HtuUi (London: Amo Press) . ( 1 987 ) . 'Consumerism in H eal th Care: market Model', Policy & Politics, Vol. 1 5, no. I .

W inkler, F.

Beyond the Super­

Wood , P., and Badley, N . ( 1 978) . ' An Epidemiological Appraisal Disablement', in Bennett, A. (ed. ) .

Wood , P . ( 1 98 1 ) . lnternatimull Classification of lmpainnenls, and Handicaps (Geneva: World Heal th Organisation ) .

of

Disabilities

Plt.Jsiul Disability: A Psychological Approach (New York: Harper Row) . Wright Mills, C. ( 1 970) . Tire Sociological Imagination ( Harmondsworth: W righ t , B . ( 1 960) .

Penguin) .

Wrong, D. ( 1 9 70) . Max

Weber ( New J ersey: Prentice-Hall) . Zola, I . ( 1 97 2 ) . 'Medicine as an I ns t i t u tio n of Social Con t rol , SociobJgi­ cal Reuiew, Vol . 20. '

Zola, I . ( 1 979) . H el ping One Another: A Speculative History of the Self- He l p Mo ve men t ' , A rchioes of Physical Medicine and Rehabilita­ tion, Vol . 60. Zola, I . ( 1 98 1 ) . Mising Pieces: A Chronicle of Living with a Disability ( Philadelphia: Te m pl e University Press) . Zola, I . ( 1 982). 'Social and C u l t u ral Disincentives to I ndependent Living', Archives of Physical Medicine and Rehabilitation, Vol. 63. '

Index

Aaii-Jilek, L. Abberley, P.

Ba ttye , L.

1 15 Beardshaw, V. 1 32 Becker, G. 67 Bersani, H. 22 black people xi, 3, 73-5, 83, I 03, 1 15 Blaxter, M. I , 70 blindness xiii-xiv 3, 1 6, 2 7 , 1 0 1 , 1 02, 1 1 3- 1 4 Bocock, R. x , 1 24, 1 30 Boggs, C. 1 1 3, 1 20, 1 23, 1 27- 3 1

1 9-20

1 2, 1 4, 20- 1 , 69, 70, 72, 1 2 1 , 1 3 1

Abbot, P. 43 Ablon , J . 15 a bortion 55 Abortion Act ( 1 967) 55 Abrams, P. 37, 38, 39, 49, 60 action theory of wel fa re 38-9, 49, 50- I adjustment 63-5, 68-70 Ainley, S. 66 Albrech t, G. 53, 54, 78 alcoholism 3, 30, 50 Althusser, L. 32 America: welfare & civil rights 40, 67, 7 1 , 7 3 , 1 05, 1 20- 1 , 1 22 Am erican M�ical Association 52 Anderson, B. 15 Anderson, E . 70 anthropology, social x;xi, 1 4-20 passim, 23 Amold, R. 67 arts movemen t 62 Asch, A. 7 1 -2, 73 as yl u ms ut institutions A udit Commission 89 Bader, Sir Douglas B ad l ey , N . 23

Baldwin , C .

74 Barker, R. 66 B arre tt , D. 14 Bart, D. 92 Barton, L. 82

61

pasm

Bon wi ch , E.

72 I , 69, 79 , 97, 1 02, Borsay, A. 1 04- 5 , 1 06 Brandon, D. 93, 1 1 5 Brechin, A. 90 Brisenden, S. 5, 49 Britain changi ng socie ty 26- 7, 80, 8 1 2, 1 1 3- 1 6 welfare aspects 40, 70, 7 3 , 80, 96, 1 07 , 1 2 1 , 1 22 British Council of Organisa tions of Disabled People ( BCOD P ) 6, 7 1 , 89, 93, 1 1 0, 1 1 5- 1 6, 1 1 8 British Deaf Association 117 Brittan, A. 71 Brooks, N. 7 1 Burton, M . 44 Bury, M. 82 Campling, J . capi talism

70- 1

development & features

1 46

xiv, I I ,

INDEX 23, 25-9, 32, 34, 36, 40- 1 , 44-

70, 87, 1 09, 1 1 2 view of disabled people xi-xii, xiv, 2 1 , 22, 23-4, 25, 4 1 -2, 47, 5, 6 1 ,

52, 54, 78, 1 32 sa also individualism;

socialism, transition to; society; state, the Castells, M . 1 1 3 Cawson, A. 1 04 Centres fOr Independent & Integrated Living (CILs) 1 20- 1 cerrbral palsy 55 charities set voluntary organisations Cheshire G. L. 1 27 Cheshire Foundation 39, 98 Child Action Poverty Group I 03, 1 17

children

2 1 , 34, 39, 55-6, 68, 92-3

see tJiso education Chronically Sick & Disabled Person's Act ( 1 970) 80, 88 civil rights movements 4 1 , 88-9,

1 05, 1 2 1 , 1 22

Cohen, S. 36 Cole, S. 1 3 communication for deaf & blind people xiv, 17

73, 76, 86, 89

Dale,J. 1 09 Dalley, G . 44, 76, 85 Davis, A. 55 Davis, K.

5, 1 2 1

De jong, G. 1 2 1 , 1 22 deafness xiii-xiv, 3, 1 6- 1 7, 27, 101, 1 14

Deegan, M. 7 1 , 75, 76 definitions of disability, etc.

xii, 2-

6, 1 1 , 25, 34, 4 1 -2

dependency 81 , 82, 83-94, 96- 1 0 1 sa tUs. self-help movement; society, new social movements Derbyshire Centre for Integrated Living I 1 7, 1 2 1 deviance 1 5, 30, 36 disabili ty: definitions xii, 2-6, 1 1 , 25, 34, 4 1 -2

Disability Alliance

87, 1 071f,

1 17

disability movement

1 1 3-23,

1 26-9 su also self-help

movement; society, new social movements Disabled People's International (DPI ) 6, 7 1 , 1 1 6, 1 1 8, 1 23 Disabled Person's Employment Act ( 1 94)

1 6-

disablist language 3, 58, 90 ethnic difficulties 74 community care 36, 37, 38-9, 42, Comte, A. 25, 29-30, 3 1 , 37 conductive education 55-6 Confederation of Indian Organisations 73, 74 Connelly, N. 73 Conrad, P. 30, 48 consumerist group see self-help movement contradiction theory 4 1 Comes, P. 1 25-6, 1 27 Couam, P. 56, 57 Crewe, N. 1 1 9 Crine, A. 1 1 5 culture see under society

147

88-9, 93, 1 05, 1 29

Disabled Person's (Services, Consultation & Representative) Act ( 1 986)

80, 88

Disablement I ncome Group (DIG) 98, 1 03, 1 07fT, 1 1 4, 1 17

disablement resettlement ofcers (DROs) 93 discrimination see oppresion; society, restrictions disease & illnes 2, 4, 1 2- 1 4, 1 8, 20, 47-8, 53

distributive principles

1 3, 24, 32,

40- 1 , 42 Douglas, M. 20 Doyal, L. 1 3 drug addiction 30

economic influences

3, 1 3, 1 8- 1 9,

1 48

INDEX 2 1 -5 passim, 32, 42, 96 7, 1 04,

1 09, 1 23, 1 24, 1 29 stt also capi ta l is m ; state,

Edgerton, R.

the

1 5- 1 6

ed ucation 1 7, 5$-, 70, 74, 84, 923, 98, 1 02, 1 26 Ed ucation Act ( 1 98 1 ) 92, 1 00 Elias, N . 32

Elliot, D.

4

employment

69, 74, 87, 88-9, 93,

1 26, 1 29 set also work ethic

enlightenment .theory ofsocial welfare 37 , 38, 49 environment bu ildi ng deficiencies xiv, 69, 86, 92, 98, 1 20 social influence 4, 22-4, 27 - 9, 55, 79, 1 1 3 , 1 20 epilepsy xiii, 1 9-20, 22, 30-2, 4950 Erlanger, H. 79, 80, 86

Estes, C. 57 ethnic groups see black people; minority groups Evans-Pritchard, E. 1 9 Fabian Society

fa m i l y : role of

1 17 34-6, 38-9, 44, 69,

72 Farb, P. 1 6-J 7 Farber, B. 1 5, 22 Fiedler, L. 60, 1 32 financial aid su urultr wdfare state

George, V. 24, 79, 87 geriatric m ed i ci n e 56-7 germ theoi'Y 47-8, 53 Germany: welfal'e policies 40 Giddens, A. 25 Gofman, E. 3 7 , 56, 66 Gl'aham Monteith, W. 55 Gramsci, A. x, 43, 46, 63, 8 1 , 97, 1 23-4, 1 27 Greater London Association of Disa bled People 74 Greenwich Association of Disabled People 1 1 8 Gregory,J. 83, l OO Groce, N . 1 6- 1 7 Gussow, Z. 66 Gwaltney , J . 16 Gwynne, G. 9 , 76 Habermas , J . 1 25 Hadley, J . 93 Hahn, H . 79, 80 , 8 2 , 83 , 1 05 Hamil ton, P. x, 43

handicap 2, 4, 6, 7 1 8- 1 9, 2 1 , 22 Hanks, ] . &: L. Harbert, W. 25 Hardin, B. 1 18 Hari, M. 56-7 Harris, A. 2, 4, 6 Hasler, F. 1 19 health care system see welfare state heart con d i t ions 13 hegemony concept 43-4, 1 23-4,

1 30- 1

52, 54, 56, 62, 63, 66, 1 25, 1 26,

Hellman, C . 1 5 Hirst, P. 46-7 historical materialism 25-9, 49 homosexuality 3, 30, 50, 66

1 27

hospitals

Finch , J .

76, 85

Fine, M. 7 1 -2, 73 Finkelstein, V. I, 6,

26-7, 28, 29,

Forder, A. 26 Foster, G. 15 Foucauh, M . 32, 45, 46- 7, 56, 1 05 freedom of information 1 00,

1 10 Fl'eidson, E. 50, 82 Fl'f, E. 101 Funk, R . 1 02

stt

institutions

Huemann,J. 9 1 Humphreys, L . 66 Hunt, P. 9 H utchinson, D. 92 hyperkinesis 50

identity formation 4, 76

xii-xiii, 60, 62-

INDEX ideologies

43-59, 60, 78-82

87, 90, 98 I n ternational Year of Disabled People 1 15 Joint Committee on Mobility 32 Kittrie, N. 30, 50 Kle i n ma n , A. 14 Koch, R . 47 Kumar, K. 1 12 Kutner, N. 75 Ladau, E.

1 23

16 Le Grand , j . legislation

Ladd, P.

pas, 94 see alSfJ capitalism; individualism ; medicalisation concept lgnatieff, M. 33, 35, 38 l llich, I. 1 25 i ll nes su disease & illness lllsley, R. 84, 87, 88 impairment 2, 4, 7, 1 1 , 1 2- 1 7 , 28 , 48, 1 10 su also blindness; deafness incontinence 72-3 independence S« dependency; self-help movement Independent Living Movement 1 20-2 individualism concept capitalist ideology xi-xii, xiv, 42, 44, 46-9, 58-9, 70, 78, 82, 94, 1 32 dominance of view 3 , 6, 1 8, 25, 62-3, 84 met hodological individualism 9- 1 0 and stigma 68 su also personal tragedy theory industrialisation stt society, industrial institutionalised discrimination 83 , 85 institutions historical 28, 3 1 , 32-9, 42, 45, 52, 86 oppresivenes 9, 52, 68, 76, 8 1 ,

Jones, K .

1 49

117

1 3, 97

80, 83, 889, 99- 100; 1 03, 1 05 , I t O; 1 1 5, 1 16, 1 22 epilepsy 31 Leonard, P. I, 60, 69, 77 leprosy 66 Uvi-Strauss;�c . 20 Levy, J. 53, 54, 78 Liggeu, H. 1 05-6 liminality, cOncept of · 20 Longmore, P; . 65 Lonsdale, S. 70 Lord, G . 62 Lukes, S. 45, 59 anti-discrimination

M cCann , E. 14 M anion, M . 22 Manning, N. 24, 48, 79 Manpower Services Commission 93 Martin, J. 4, 7, 1 32 Marx, K. & Marxism I , 23, 25, 26, 3 1 , 37, 4 1 , 42, 44-5, 97 , 1 33 Maynard, M. 71 Meacher, M . 99 Mead, G. H.

62

media 33, 6 1 , 62, 65 medical profesion growth & power

xii, 3, 39, 42,

43, 47-8, 50-4, 62, 92, 1 32-3

medicalisation concept x-xii , xiv, 4-6, 25, 46-54, 58, 59, 70, 1 02, 1 1 5, 1 32 mental illnes 30- 1 and old age 56, 57 technology 1 3, 1 6 M el tzer , H . 4 mental handicap & illnes xm, 1 5- 1 6, 2 1 -2, 30- 1 , 34, 46-7' 90 M idwinter, E. 57 Miles, I . 13 M iller, E. 9, 76 minority groups 28, 67, 7 1 , 75-6, 1 05-6, 1 1 3 set also black people

1 50

I N DEX creation of dependency 88-9, 97- 1 00, 1 1 2 means of participation xiii, 1 00-

Moore,John ( Minister for Heal th) 8 1 -2, 84 Morris, P. 28

Mouffe, C. 1 23 multiple m i nority groups 75···6 56 multi ple M u rph y, R . 1 7 , 20, 2 1 , 72 m uscular dystrGphy 56

I L

Nathwam,' A. ·

" ' ·

:

,

74 ASs is ta nce Act ·

!UltY i ·gg

d isability income r o, 1'161 ! · Navarro, V. 50 NCVO 74 t h�ry of social · · 38 No�e,.fel t 4

1 07-9,

occ u pat ional

therapy · 48, 52 OECD 4 Offe, C. 1 22 Ofce of Population Censuses & Surveys (OPCS) 4, 5, 7-8, 1 0 old people 1 04 Oliver, M.

35, 48, 56, 5 7 , 82,

I , 2, 1 0, 3 1 , 48, 53, 63,

69, 70, 79, 82, 83, 89 , 1 02, 1 03, 1 04, 1 1 4, 1 1 5, 1 1 7 , 1 1 9, 1 20, ' 1 25 op press ion social I , 2, 6-7, 1 8-2 1.,·68- 70, 72, 76, 1 1 4, 1 30- 1 also society, rest r i c ti ons Oyen , E. 96 set

Parker, R.

3 3 , 35, 38-9

Parliament stt state, the Pasteur, Louis 47 personal tragedy theory I , 2-3, 1 0, 1 5, 24, 25, 70, 78, 80- 1 , 82, 92-3, 94 also individ ualism

set

48, 52 politics contradiction theory

physiotherapy

4- 1

3, 1 06, 1 1 6-20, 1 23-4, 1 27-9 8 1 -2, 89, 95, 96- 7 , 99, 1 03, 1 09, 1 1 0, 1 1 6, 1 24

party views

su also legislation; presure group ac tivi ty; self-help movement Poor Law Commission 86 population 1 3, 27, 32 surplus theory 1 5, 2 1 poverty 3, 1 2- 1 4, 34-, 80, 86, 1 09 power theory of welfare 39, 49 pressure group activity xiii, 1 0 1 , 1 03-7, 1 08, I 1 0, 1 1 4 prisons su institutions privatisation 97-8, 1 1 6 profesionalised services 1 1 , 76, 89, � I , 93-4, 1 05, 1 1 0, 1 1 5, 1 1 9, 1 33 psychiatry 47 psychol ogy & psychological adjustmen t x, 63-4-, 65, 66, 68, 69, 77, 84

Quicke,J.

Quota,

the

6 1 -2 105, 1 29

racism x i i i , 3, 70, 73-7, 83, 1 00, 1 2 1 , 1 29, 1 3 1 RADAR 1 05, 1 1 7, 1 1 8 Rasmussen, K. 2 1 rationalisation 39-4 1 rehabilitation 53-4, 63, 74, 75, 9 1 Rehabilitation International 1 16 Re iser, S. 1 25 religiou s & su pe rst i t ious influence 1 6, 1 9-20, 22-3, 29, 3 1 , 40 �sidential care set institutions Robinson, R. 97 Roth, W. 79, 80, 86 Rot h man, D. 32 Royal Col l ege of Physicians 1 32-3 Royal National I ns ti tu te for the Blind (RNIB) 1 1 4, 1 1 7 Rubin, D. 20 Ryan, J . 1 0, 27, 34, 38, 1 1 6

I N DEX Salilios·Rothschild, C .

Sapsford , R.

Schneider, ) .

1 9, 23

43

30, 48

Scott, R.

1 6, 24, 68 Scull, A. 37, 38 segregat ion su institutions self·help movement 67, 84, 1 06, 1 1 7- 1 8, 1 1 9-23 su also dependency;

m ove men t

b

disa il i t y

services for disabled people d eve l opme n t

1 1 3-20

inadequacies

24,

30, 53, 98, 1 1 0,

xiii , 90- 1 , 94, 96-

1 0 1 , 1 1 4, 1 2 1 ut also welfare state sexism x i i i , 3, 70, 75-7, 83, 1 00, 1 2 1 , 1 29, 1 3 1 su also women

Shapiro,

M.

Shearer, A. Shelter

movement s

new I l l,

1 1 2-J 6. 1 1 8-29 types 26-9 su also capitalism

sociology, social science

xii i ,

107,

x-x t , xn,

I, 9- 1 0, 22; 68- 70, 82, 84, 87 , 97, 1 3 1 ' Soder, M. 4, 22 1 00, 3 1 Sokolowska, M . 29 Spastics Society lJ8, 1 05 , 1 1 7 spma

t

a

spma tnj· u nes ·

1 3,

56, 57, 69

S p in al I nj u ries �ia tion

.7 1 ,

1 17 Stafford, M.

68

state, the atti tude to d is a bl ed

32-6, 50 2,

78-82, 87-9, 96-7, 1 1 4 fiscal constraints 4t , s't , 84, 96, 97-8, 1 00, 1 02, 1 1 0, 1 1 8

57-8 88

103

and voluntary

Shirley, 0. 1 2- 1 3 sickle cel l disease 74

o rga ni sa tion s

Si l ve r, R. 64 S i s te rs Agai nst Disablement S m i th , R. 74 Snowden, Lord 94

1 04-5, 1 27-9 econo m ic influences; politics; welfare state stigmatisation 1 5, 20, 34, 65-, su also

1 17

social adjustment su adjust ment social construction 78-83 social creation 82-3

social oppression stt oppression Social Securi ties Act ( 1 968)

1 16

social theory of disability

151

7, 91 1 , 22-4, 25, 43, 77, 78-94, 1 1 5 x,

soc i a l is m : transition to 26- 7 , 42, I l l , 1 1 2, 1 24-5, 1 32 socie ty cultural production & image of d isa i l i t y 1 2-24, 60-5, 66-7,

b

76-7, 80- 1 , 1 1 3 forces & res t ric t ion s xiv, I 0- 1 1 , 28, 32-6, 47, 50-2, 78-83, 991 00, 1 02-3, 1 09, 1 2 1 , 1 27, 1 2931 (see also stigmatisation) ind ustrial 3, 1 3, 18, 24, 26-9, 3 1 , 36, 50, 84, 85-6, 100

74-5, 1 02 3, 34, 39-40, 5 1 -2, 82 stuttering 57-8 Stone, D.

supermarkets

98

Susr, M.

1 2, 1 3 Sutherland, A . 2 , 63, 69 , 70, 1 2 1 S utton . A . 56, 57 Swain, J. Szasz, T.

Taylor, D.

90

50 13

Taylor, R.

1 25 Taylor·Gooby, P. tech nology 1 3, 1 6,

7

1 09 28, 29, 40, 1 24-

Tennyson, C. 92 therapy 48, 52 Third Worl d 1 3, 87, 100 Thomas, F . 27, 34, 38 Thomas, W. I. 2 Thorpe, C. 73 Tillotson, A. 32

1 52

I NDEX

Titmuss, R. Toik k a , R.

99

cultural inH uence

73

Tomli nson , S. 82 Topl is, E. I , 27, 35, 1 1 4 Touraine, A. 113 1 3, 70, 82, Townsend , P. Tracy, G . 66

transport

1 04, 1 1 0

70, 90, 94 9 47 20

Union of the Physically I m paired Against Segregation ( U PIAS) 63, 69, 76, 1 09- 1 0,

1 17

U n i ted Nations

1 4, 24,

financial benefits

Trieschmann, R.

Turn er, B. Turner, V.

xiv,

84-5, 1 1 4

1 15

48, 74, 84, 87, 98, 1 02, 1 07-9, 1 1 0 wheelchai rs 48, 54, 94 White, A. 1 32 Wilding, P. 24, 79, 87 Wilkin, D. 84 Williams, G. 1 22 Wi n kler , F. 98 women xi, 3, 70-3, 75, 76, 83, 1 05, 1 15

see also

sexism

Wood, P. 2, 4, 6, 23 Woolley, P. 46-7 work ethic 43, 60, 85-7, 89, 1 25-6 inability to work 27, 34, 4 1 , 47,

70, 85, 86 6, 39, 7 1 , 93, 98, 1 03-5, 1 07- 1 0, 1 1 3-20

voluntary organisations

Wal ker, A.

82, 97, 99 Warnock Report 92 Watson, W. 1 2, 1 3 Weale, A. 1 19 Weber, � . 1 , 23, 25, 3 1 , 39, 40, 4 1 welfare state crises & restructuring

xiii, 80, 8 1 -2, 88, 95- 1 0 1 , 1 1 2, 1 1 6

industrialisation

26-8, 40- 1 ,

44, 46, 85-6

workhouses see institutions World H ea lth Organistaion (WHO) 2, 4, 5, 6, 1 0 Wortman, C . 64 Wright, B. 66 Wright Mills, C. Wrong, D. 40 �a,

I.

6, 50, 64, 9 1 , 1 1 9, 1 20, 1 25