Disability studies today and tomorrow

Sociology of Health & Illness Vol. 27 No. 1 2005 ISSN 0141–9889, pp. 138–148

© Blackwell Publishing Ltd/Editorial Board 2005. Published by Blackwell Publishing, 9600 Garsington Road, Oxford, OX4 2DQ, UK and 350 Main Street, Malden MA 02148, USA

Blackwell Publishing, Ltd.Oxford, UKSHILSociology of Health & Illness0141-9889© Blackwell Publishing Ltd/Editorial Board 2005January 2005271Original ArticleReview article: Disability studiesTom Shakespeare

Review article: Disability studies today and tomorrowTom Shakespeare

PEALS, Bioscience Centre, University of Newcastle

Barnes, C. and Mercer, G.

Disability

. Oxford: Blackwell Publishers Ltd. vi+ 186pp. 2002. £45 ISBN 0 7456 2508 8 (hbk) £14.99 ISBN 0 7456 2509 6(pbk).

Swain, J., French, S. and Cameron, C. (eds)

Controversial Issues in a Disa-bling Society

. Buckingham: Open University Press, ix + 198pp. 2003. £50ISBN 0 335 20905 X (hbk) £17.99 ISBN 0 335 20904 1 (pbk).

Priestly, M.

Disability: a Lifecourse Approach

. Cambridge: Polity. 248pp.2003. $62.95 ISBN 0 7456 2512 6 (hbk) $26.95 ISBN 0 7456 2513 4 (pbk).

Barnes, C., Oliver, M. and Barton, L. (eds)

Disability Studies Today

. Oxford:Blackwell Publishers Ltd. vi + 280pp. 2002 £50 ISBN 0 7456 2656 4 (hbk)£15.99 ISBN 0 7456 2657 2 (pbk).

Longmore, P.K.

Why I Burned My Book and Other Essays on Disability.

Philadelphia: Temple University Press, ix + 278pp. 2003. $23.95 ISBN 1-59213-024-0 (pbk) $71.50 ISBN 1-59213-023-2 (hbk).

Tregaskis, C.

Constructions of Disability. Researching the interface betweenDisabled and Non-disabled People

. London: Routledge ix + 164pp. 2004.£17.99 ISBN 0 415 32183 2 (pbk).

Riddell, S. and Watson, N.

Disability, Culture and Identity

. Harlow: Pearson2003. $57.50 ISBN 0 130 89440 0 (hbk).

Introduction

Disability raises many interesting questions for the social sciences: What isdisability? How has the concept changed at different times? How do societiestreat people with impairment? What implications do impairment and disabilityhave for social identity and social interaction? How are disabled peoplerepresented in the media and culture? It is obvious that these academicissues have major political implications. Since the early 1970s, disabled peoplein Britain and across the globe have been mobilising to challenge socialexclusion. The resulting politics of identity, following the precedents of other

Review article: Disability studies 139

© Blackwell Publishing Ltd/Editorial Board 2005

oppressed groups, has challenged ways of naming and knowing disability,alongside demands for civil rights and social recognition.

When I started my PhD research in 1990, there was only a handful ofsociology texts which explicitly addressed these questions. Nor had disabilityfeatured in more than one lecture of my undergraduate degree. Disabilitywas a problem for social policy and a research domain for medical sociology,but not a central concern of mainstream sociology. When I told my professorof my thesis topic, he replied with one word: ‘Goffman’. After reading

Stigma

and

Asylums

, and research studies by Blaxter, Locker, Topliss, Walker and afew others, I was left searching through the journals and trying to constructa sociology of disability by analogy with gender, race and other forms ofsocial division. So the arrival of Mike Oliver’s

The Politics of Disablement

(1990), Colin Barnes’

Disabled People in Britain and Discrimination

(1991)and Jenny Morris’

Pride Against Prejudice

(1991) was a welcome transforma-tion of the intellectual climate. ‘Organic intellectuals’ – disabled peopleactive in the political struggle – were beginning to create theory and providedata to back up the civil rights agenda. Academic courses, provided first bythe Open University and subsequently by the University of Leeds, offeredroutes into theory and research for disabled people who often lacked tradi-tional qualifications. The journal

Disability and Society

(formerly

Disability,Handicap and Society

), under the editorship of Len Barton, offered its pagesto activists as well as to academics, and grew to become the internationalflagship of the new field of disability studies.

Fifteen years on, disability titles fill the catalogues of the major socialscience imprints, while nearly 200 scholars gathered in Lancaster in 2003 forthe first annual UK Disability Studies conference. The seven books reviewedin this article give the opportunity to assess intellectual progress, and high-light the stubborn problems and remaining lacunae for the next generationof researchers.

Starting points

Neither the undergraduate not the postgraduate seeking introductions todisability studies can now complain about lack of choice. To textbooks byColin Barnes

et al

. (1999), David Johnstone (1998), Deborah Marks (1999)and others are now added a key concepts volume by Colin Barnes and GeoffMercer, a stimulating collection by John Swain, Sally French, Colin Cameronand others, and a new version of an old classic,

Disabling Barriers, EnablingEnvironments.

Colin Barnes and Geoff Mercer’s book offers students a whistle-stopsociological introduction to some major themes in disability studies: modelsof disability; oppression in historical and contemporary societies; debatesabout impairment and the body; culture and representation; politics; andglobalisation. It will bring readers up to date with the major literature, and

140 Tom Shakespeare


some chapters are particularly fresh and stimulating – the discussion ofdebates around the body and impairment for example, and the chapter ondisability and development. The lack of space, however, leads to some sweep-ing generalisations and a lack of nuance. Other sections seem telescoped,and occasionally inaccurate. For example, the authors claim wrongly that itis illegal for the beneficiaries of charities to be members of managementcommittees or boards, and that charities cannot be involved in politicalcampaigning. Such details aside, this textbook will be very useful for first-yearundergraduates.

Controversial Issues in a Disabling Society

includes the work of nine differentacademics and activists, and contains short sections on language, models,genetics, independent living, inclusion, professionalism, charity and global-isation. The range of issues covered means that discussion is sometimessuperficial, but it is always lively and varied. Overall, the authors are com-mitted to the disability rights ideology, and question whether traditionalapproaches – medical treatments, rehabilitation, therapies, care, charities –are appropriate or beneficial for disabled people. Yet, they are often not afraidto challenge the dominant consensus of disability studies. For example, thechapter on genetics points out that some conditions – Huntington’s disease,for instance – may be aptly described as ‘tragedies’. There is a sympatheticdiscussion of a voluntary organisation working with people with aphasia,balancing the traditional disability rights rejection of charity.

Evidence from a variety of research projects undertaken by the authors iscited regularly, and the voices of disabled people are woven through everychapter. It is not always clear how representative these opinions are, but theyhave the undoubted merit of bringing the text alive and grounding it in theeveryday experience of disability. Discussion questions and debate activitiesare offered in each chapter. All this means that the text would be particularlyuseful for beginners in disability studies, and particularly for professionalcourses where it is necessary to challenge attitudes and stimulate thinking,rather than engage in systematic sociological exploration.

The first edition of

Disabling Barriers

–

Enabling Environments

was producedfor the Open University course on the The Disabling Society in 1993, andbecame one of the most widely-used readers in disability studies. The sameformat – short, pithy entries, predominantly authored by disabled people,both activists and academics – has been retained, although the majority ofchapters are newly commissioned. All but two of the 45 chapters are from aUK perspective. The new edition also retains the same structure as the old one.

In their introduction, the editors make two claims. First, that the 10 yearssince the first edition have seen little progress for disabled people, as thedominant picture remains one of discrimination, prejudice, injustice andpoverty. This suggestion that nothing has changed remains only an assertion,and one which is undermined by some of the examples offered in subsequentchapters. Many observers might see the passing of the Disability Discrimina-tion Act, and the creation of the Disability Rights Commission as major



achievements over this period: the book lacks full and balanced assessment ofthe impact of either. Second, the claim that any radical change in prospectsfor a better quality of life can only come from disabled people taking theinitiative for themselves. I would perhaps be less purist: given the chequeredrecord of some disabled-led initiatives, and the major contributions whichmany non-disabled professionals and allies make to the lives of disabled people,the best way forward might not be separatist isolation, but for disabled andnon-disabled people and organisations to work together in collaboration.

The collection opens with chapters by two of the founding fathers of UKdisability studies, Mike Oliver and Vic Finkelstein, who reiterate the politicalbenefits and intellectual coherence of the social model of disability whichthey have done so much to promote. These perspectives set the tone for thevolume, which includes no balanced debate about the social model. Manyareas of disabled people’s lives are ignored: rehabilitation, living with painor degenerative illness, the role of surgery and other medical interventions.Nor is there any discussion of the new WHO International Classification ofFunction, which may offer the potential for moving beyond the now sterilesocial model /medical model debate, and which has been adopted by DisabledPeople’s International, the global representative body.

On the plus side, most non-health related areas of the disability experienceare covered, and some of the chapters are excellent. The two middle sectionsof the book –

Controlling life styles

and

In charge of support and help

– giveaccessible summaries of important fields – for example, leisure, employment,housing, community care and independent living – which will be very usefulto the beginner. Several of the chapters draw on research projects, andinclude the voices of disabled people. However, the quality of entries isuneven, and the book would have benefited from much tighter editing: someof the chapters would set a poor example to undergraduate readers. Overall,I found it a disappointing read.

Fresh perspectives

Disability: a Lifecourse

Approach

is an accessible and well written survey ofthe literature on different stages of the lifecourse, and is better suited as asociological introduction to disability. By looking at how impairment anddisability impact across the lifecycle – chapters cover the antenatal period,childhood, youth, adult, old age and death – Mark Priestley manages to drawout continuities and parallels, and connect disability studies to wider socialscience debates on youth, adulthood and ageing, as well as bioethics contro-versies. Helpful summaries and questions for discussion make it a usefulstudent text, although the breadth of research covered will make the volumevaluable to a much wider audience looking for an overview of these issues.

Impressive though the volume is, some opportunities for making connectionsand breaking new theoretical ground were perhaps missed. For example,

142 Tom Shakespeare


disability affects non-disabled family members at different stages of the life-course: there is important literature on young carers, on siblings of disabledchildren, and on the impact of caring on partners and adult children, par-ticularly women. By focusing almost exclusively on disabled people them-selves, Priestley neglects the impact of disability on non-disabled people, andmisses the chance to offer a disability rights-based re-reading of some ofthese debates. I also looked in vain for a theorization of disability across theindividual life span: having distinct chapters on children, youth, adults etc,obscured the fact that most individuals do not experience impairment at everystage of life. There was discussion of how people become impaired in adult-hood or old age; it is however also true that some children with impairmentgrow up to be non-disabled adults. Equally, many children with impairmenthave shortened life spans. This raises questions about the transition toadulthood: what are the reasonable aspirations of a man with Duchennemuscular dystrophy, who may die at the age of 25 without having left homeor attended college or broken away from parental support and control?

To greater extent than the first four books,


offersoriginal insights via essays from a range of British and North Americanauthors which deepen understandings and question core assumptions ofdisability studies. Useful reviews of American and British disability studiesfrom Gary Albrecht and Carol Thomas open the volume. Bill Hughes con-tributes an overdue analysis of the relationship between disability studiesand the sociology of the body. While mainstream sociology has neglected ormedicalised disability, Hughes suggests that disability studies has in turnmarginalised impairment. He challenges dualistic thinking and explores theways in which impairment is social, and disability embodied. Anne Borsaychallenges the lack of historical depth within disability theory, and providesan analysis of the surveillance activities which charities and medicine deployedto police disabled people between the late Victorian period and the beginningof World War II. Phil Lee continues the critical theme by analysing the rhetoricof the disability movement and of New Labour. He suggests that someover-simplistic applications of the social model can promote an underdevelopedand fundamentalist politics which inhibits the development of realisticstrategies. I particularly appreciated the inclusion of these critical voiceswithin a mainstream disability studies collection. Another welcome featureis the international emphasis, with several chapters exploring the impact ofglobalisation.

Original analysis

Finally, three books which offer analysis based on original research and willbe of interest to the disability specialist. Paul Longmore is one of the mostimportant voices in US disability studies, and his collection showcases thefour areas in which he is active: disability historiography; writings on film



and culture; the bioethical debate about end of life; US disability politics.All his work is distinguished by clarity of thought and depth of scholarship.

One of the most powerful essays,

Why I burned my book

, outlines theobstacles which disabled people face in academia. Longmore relates his yearsof struggle to overcome discrimination, financial barriers and the byzantineUS social security regulations, in order to succeed as a disabled academic.At about the same time as I was starting my own postgraduate career, Paulpublicly burned his own book,

The Invention of George Washington

, outsidethe federal building in downtown Los Angeles to highlight the fact that hewas unable to earn a living without the government disability supportwhich enabled him to survive as a disabled person. Most disabled people nolonger face the same stark choice between dependency on welfare, and totalwithdrawal of welfare if they try to survive in the job market. But manydisabled people find that their schooling leaves them unable to get thequalifications they need to attend university, or that barriers to participationin higher education prevent them reaching their intellectual potential, orthat discrimination from employers makes it impossible for them to use theirdegrees in subsequent employment.

Claire Tregaskis’ book reports on research exploring the interface betweendisabled and non-disabled people, conducted in a leisure centre. Her personal,reflexive style of writing is engaging, and the book casts valuable light on theexperience of a person with impairment doing research with non-disabledpeople. Tregaskis engages with several traditions: mainstream social researchmethodology; disability studies, particularly the psycho-emotional approachpioneered by Carol Thomas; and Social Role Valorisation. Most UK disabilitystudies authors have either ignored or rejected SRV, despite the importance andinfluence of ideas about normalisation, particularly in the learning difficultiesfield. The balanced critique here is very useful. Tregaskis’ detailed analysis of inter-actions between disabled and non-disabled people is fascinating and important.

In my opinion, however, she slips into the common disability rights errorof seeing oppression in every negative response. For example, when non-disabled people park in disabled parking bays (p.67), I question whether thisrepresents unconscious hatred of disabled people, as opposed to selfishness,lack of respect, or laziness. The danger of an ‘emancipatory research’ approachis that it may lead to a default explanation of exclusions or difficulties interms of oppression or institutional discrimination. Tregaskis herself recog-nises this, in recounting the anecdote of a woman with learning difficultieswhom the leisure centre staff appeared to be excluding and patronising (p.64ff):it transpired that her behaviour had included vandalism and racist abuse,and to me, it seemed that staff took a much less punitive line with her thanthey would have done with a non-disabled person behaving in similar ways.But for Tregaskis, staff actions on this occasion revealed their underlyingassumption that disabled people are eternal children in need of surveillance.

Disability, Culture and Identity

brings together eleven papers, either report-ing on research with various groups of disabled people – young people, older

144 Tom Shakespeare


people, Asians, people with learning difficulties, mental health survivors – orexploring broader issues, including multiculturalism and the relationshipbetween deaf and disability studies. Of all the books under review, this wasthe most valuable to me, because almost all the chapters were based onoriginal empirical research. At first sight it is a rather disparate collection,however dominant themes and inter-connections emerge as the papers areread together.

A particularly strong aspect of the book is the focus on how people withdifferent impairments identify, and how these identities are shaped in inter-action with other people, and with the dominant structures and values ofsociety. For example, Priestley’s research found that older people and theirorganisations were unwilling to identify as disabled, and had no awarenessof social model approaches. Watson recuperates Goffman, showing how eve-ryday interactions are central to the identity of disabled people. Fergusondiscusses how organisations of people with mental illness view terminology– ranging from ‘patients’ to ‘users’ to ‘survivors’. Goodley shows how self-advocacy groups challenge labels and develop a distinctive politics which insome ways is implicitly at odds with the disability rights movement. Severalchapters draw on the politics of recognition – Nancy Fraser and Axel Hon-neth, for example – to give a new perspective on disability studies.

Another theme is the possibility of disability culture – or in MairianScott-Hill’s chapter, deaf or Deaf culture. Paul Darke launches a bitter attackon the arts establishment’s neglect and dilution of the liberatory promise ofDisability Arts. It is not clear how far his critique is disability-specific: thatis, many non-disabled artists have similar complaints about how the arts arefunded, and the lack of grassroots participation or political emphasis. In myexperience, money has often been forthcoming for cultural organisationscontrolled by disabled people, but with a few important exceptions, highquality art and artists have not emerged. Whereas Paul Longmore’s bookincludes reviews of several films, and analysis of the main forms of disablingstereotype, the specifics of cultural representation are curiously absent fromRiddell and Watson’s collection. In this volume, culture refers to ways ofliving and identifying and relating, rather than to cultural or media studies,with the exception of an interesting analysis of the demise of Radio 4’s

DoesHe Take Sugar

, and its replacement by a mainstreaming of disability issues.

Perspectives on health and medicine

Readers of this journal may be particularly interested in how these authorsapproach issues in the field of healthcare. Disability studies has been criticisedfor failing to deal with impairment, a challenge which Oliver vigorouslyrefutes in his chapter in

Disabling Barriers, Enabling Environments

. But thesebooks do almost entirely ignore impairment-related issues which are import-ant to the lives of many disabled people. While bodies do come in – for



example, a useful chapter in the Barnes and Mercer introduction, and BillHughes’s discussion in


– there is little empiricalresearch or sophisticated exploration of this topic in these pages.

There are, however, extensive discussions of the role of medical professionalsand professionals allied to medicine. The prevailing attitude to professionalsis very negative. For example, it would be easy to conclude from Barnes andMercer’s discussion of medicalisation that disabled people had derived nobenefit from the development of health services. The authors of

ControversialIssues

echo the critique of Oliver and others that non-disabled professionalsare parasitical on disabled people, and that professional practice is self-interested, oppressive and abusive. In these texts, diagnosis is always anunwelcome form of labelling, although outside political rhetoric, people withimpairment and illness sometimes seek out diagnosis, and feel validated byit. A rather more balanced account is provided by Watson, who shows howinteractions with health professionals, while contaminated by ignorance andprejudice, nevertheless can be reformed, not least through the involvementof disabled people in training medical students.

Bioethical issues have been prominent in disability politics, and there areextended discussions in three of these volumes. Colin Gobe gives a succinctsummary of genetics in

Controversial Issues

, and by providing a case studyof a woman with Huntington’s disease, shows that impairment can indeed bea tragedy. Priestley’s treatment of ‘Birthrights’ seems to me less strong thanthe rest of his volume. Suggesting that selective abortion and prenatalscreening are eugenic requires both a definition of the term, and carefulexploration of the motives and practices of professionals and prospectiveparents. Talking about ‘right to life’ risks moving into the territory of ‘foetalrights’ and other anti-abortion discourses. Citing phenomena such as lateabortion and wrongful birth suits as if they are common rather than excep-tionally rare is misleading. Both Priestley and Longmore engage with end-of-life issues. Initially, it appears paradoxical that the disability rightsmovement supports the autonomy of disabled people in every area except theright to advance directives and assisted suicide. However, Longmore persua-sively documents how the disabling contexts and values are the main problemsfor people with impairment and degenerative illness, as well as exposing theanti-disability prejudices of euthanasia activists. These critiques provide val-uable balancing arguments to the individualistic focus on choices and rightswhich permeate bioethical thinking on this increasingly important issue.

Disability activists and materialist theorists may celebrate the absence ofbodies and impairment from these books, but it seems to me dangerous fordisability studies to neglect medicine and new biomedical technologies.Medical interventions are vital to the survival and rehabilitation of manypeople who experience impairment as a consequence of disease or trauma.Disability studies has valuable work to do: distinguishing between appropriateand normalising medical therapies; challenging doctors’ tendency to definea disabled person’s health and status totally with reference to their impairment;

146 Tom Shakespeare


analysing the potential, and dangers, of new treatments – such as stem cellresearch, gene therapy, pharmaco-genetics; asking broader questions aboutaccess and equity. Exploration of biomedicine, the role of health professionalsand the impaired body is an area where social model ideology seems to haveblocked intellectual progress.

Taking stock of disability studies

Taken as a whole, this collection of books generates a feeling of disappointment,for three reasons. First, there are signs of stagnation in the promising fieldof disability studies. Despite the inclusion of some welcome new voices –Tregaskis, Goodley, Carr, Reeve – there are still some who feel that everythingimportant was said 10 years ago, and all that remains is to restate the ortho-doxy. Sadly, two of the most innovative and original thinkers – Paul Abber-ley and Mairian Scott-Hill – died during the preparation of this review. Theirwillingness to think anew and to make wider connections will be much missedin British disability studies, together with their stimulating companionship.

Second, judging by these books, there is still a dearth of empirical researchabout oppression and exclusion, disabling social relations, and other import-ant aspects of the lives of disabled people. There is much talk about eman-cipatory research, but less evidence of the voices and experiences of disabledpeople, or systematic documenting of discrimination and rights-violations.

Third, in recent years there have been a series of important academiccritiques of the social model approach (Williams 1999, Bickenbach

et al

. 1999,Shakespeare and Watson 2001) following on from the first wave of disabilitymovement revisionism (Morris 1991, Crow 1996), plus the emergence of thenew WHO International Classification of Functioning. Yet, with the excep-tion of Carol Thomas, none of these authors engages with these challenges.

If disability studies is to survive and grow, it needs to open up to newperspectives, rethink orthodoxies, engage with critiques, and generate newand better accounts of disabled people’s lives and the social exclusion theyface. Otherwise it will become ghettoised and irrelevant, forfeiting powerand influence in the wider world.

None of which is to deny the immense achievement of disability studiesover the last 20 years, documented in these pages. It is difficult to think ofany other area of social science, since the heyday of feminism, which hasbeen so engaged with social change, and which has made such an impact onthe lives of its constituency. Chronic illness or sociology of the body perspec-tives sometimes make more intellectual sense, but arguably they have notachieved a fraction of the social transformation of disability studies, and norhave they remained accessible to a broader public. This strength of disabilitystudies is demonstrated whenever scholars from other areas draw on social-model and rights-based analysis to cast light on other areas of social exclu-sion, such as mental illness, HIV/AIDS and old age.



The task for disability studies in the next decade is to remain engaged andreadable, while deepening the conceptual sophistication and gathering theempirical evidence. In order to do this, I believe that the stranglehold ofpolitical ideology has to be broken, and disability studies has to assert itsright – and duty – to ask the difficult questions. Here are four importantissues which might do for starters:

1 How can we more adequately theorise disability? Clearly it cannotbe reduced to an individual medical problem, nor to a socially-created oppression. Disability is an interaction between impaired bodiesand excluding environments. Yet even to speak of ‘disabled people’ as acategory is problematic, given the differences between types and causesof impairments, and the interrelation of impairment and disabilitywith other social divisions and identities. Disability theorists need to dojustice to the specificities of the experiences of people with learningdifficulties, or of mental illness, or of disabled people from different culturaltraditions.

2 Biomedicine and assistive technologies offer new options for curing oralleviating illness and impairment. How are these to be assessed? Howcan the politics of disability identity be reconciled with impairmentprevention and cure, rather than the two seen as polar opposites?

3 Independent living: is the direct-payments model the only answer to thesupport needs of disabled people? Currently, the majority of disabledand older people receive homecare, not personal assistance: how will thisbalance change in future? Is there a role for some form of reformedresidential care?

4 Employment: Paul Abberley drew attention to the continuing problem ofthose disabled people who will never be able to work. What has to change,in society, for their needs to be met and their status to be improved? Thedisabled population is increasingly polarised between those in work andthose dependent on benefits: how can the exclusion and immiseration ofthe latter best be alleviated?

In an ageing society, and one in which predictive genetic informationreminds us that we are all potentially impaired, engaging with the challengeof different forms of embodiment, and removing the barriers which disablepeople, becomes more urgent than ever. Disability is not a marginal issue,and these books show it is at last getting the attention it deserves. If disab-ility studies can come together with other research areas – including sociologyof health and illness – then the whole field can advance. There is plenty ofwork for the next generation of disability scholars, and many suggestions inthese volumes for how to proceed.

Address for correspondence:

Tom Shakespeare, PEALS, University of Newcas-tle, Bioscience Centre, Times Square, Newcastle, NE1 4EP e-mail: [email protected]

148 Tom Shakespeare


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Disability studies today and tomorrow

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