The Politics of Disablement
Critical Texts in Social Work and the Welfare State General Editor: Pe1er Leonard
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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
Copyright, Designs and Patents Act 198, or under the terms of any licence permitting limited copying issued by the Copyright Licensing Agency, 90 Tottenham Court Road, London W1T 4LP. Any person who does any unauthorised
act in relation to this publication
may be liable to criminal prosecution and civil claims for damages.
The author has asserted his right to be identifed as the author of this work in accordance with the Copyright, Designs and Paten ts Act 1988.
First publisheo:H9!JO by PALGRAVE MACMILLAN
Houndmills, Basingstoke, Hampshire RG21 6XS and 175 fifth Avenue, New York, N. V. 10010 Companies and representatives throughout the world PAL GRAVE MACMILLAN is the global academic imprint of the Palgrave
MacmiUan division of St. Martin's Press, LLC and of Palgrave Macmillan Ltd.
Macmillan® is a registered trademark in the United States, United Kingdom
and other countries. Palgrave is a registered trademark in the European Union and other countries.
ISBN 978-0--333-43292-1 hardcover ISBN 978-0--333-43293-8 paperback
This bok is printed on paper suitable for recycling and made from fully managed and sustained forest sources. Logging. pulping and manufacturing processes are expected
to conform to the environmental regulations of the country of origin.
A catalogue record for this book is available from the British Library. Printed by the MPG Books Group in the UK
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�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