Portal de Periódicos da CAPES

Disability studies today and tomorrow

2005; Wiley; Volume: 27; Issue: 1 Linguagem: Inglês

10.1111/j.1467-9566.2005.00435.x

1467-9566

Tom Shakespeare,

Children's Rights and Participation

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 Disabling Society. Buckingham: Open University Press, ix + 198pp. 2003. £50 ISBN 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 between Disabled 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: Pearson 2003. $57.50 ISBN 0 130 89440 0 (hbk). Disability raises many interesting questions for the social sciences: What is disability? How has the concept changed at different times? How do societies treat people with impairment? What implications do impairment and disability have for social identity and social interaction? How are disabled people represented in the media and culture? It is obvious that these academic issues have major political implications. Since the early 1970s, disabled people in Britain and across the globe have been mobilising to challenge social exclusion. The resulting politics of identity, following the precedents of other 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 of sociology texts which explicitly addressed these questions. Nor had disability featured in more than one lecture of my undergraduate degree. Disability was a problem for social policy and a research domain for medical sociology, but not a central concern of mainstream sociology. When I told my professor of my thesis topic, he replied with one word: 'Goffman'. After reading Stigma and Asylums, and research studies by Blaxter, Locker, Topliss, Walker and a few others, I was left searching through the journals and trying to construct a sociology of disability by analogy with gender, race and other forms of social 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 transformation of the intellectual climate. 'Organic intellectuals'– disabled people active in the political struggle – were beginning to create theory and provide data to back up the civil rights agenda. Academic courses, provided first by the Open University and subsequently by the University of Leeds, offered routes into theory and research for disabled people who often lacked traditional qualifications. The journal Disability and Society (formerly Disability, Handicap and Society), under the editorship of Len Barton, offered its pages to activists as well as to academics, and grew to become the international flagship of the new field of disability studies. Fifteen years on, disability titles fill the catalogues of the major social science imprints, while nearly 200 scholars gathered in Lancaster in 2003 for the first annual UK Disability Studies conference. The seven books reviewed in this article give the opportunity to assess intellectual progress, and highlight the stubborn problems and remaining lacunae for the next generation of researchers. Neither the undergraduate not the postgraduate seeking introductions to disability studies can now complain about lack of choice. To textbooks by Colin Barnes et al. (1999), David Johnstone (1998), Deborah Marks (1999) and others are now added a key concepts volume by Colin Barnes and Geoff Mercer, a stimulating collection by John Swain, Sally French, Colin Cameron and others, and a new version of an old classic, Disabling Barriers, Enabling Environments. Colin Barnes and Geoff Mercer's book offers students a whistle-stop sociological introduction to some major themes in disability studies: models of disability; oppression in historical and contemporary societies; debates about impairment and the body; culture and representation; politics; and globalisation. It will bring readers up to date with the major literature, and some chapters are particularly fresh and stimulating – the discussion of debates around the body and impairment for example, and the chapter on disability and development. The lack of space, however, leads to some sweeping generalisations and a lack of nuance. Other sections seem telescoped, and occasionally inaccurate. For example, the authors claim wrongly that it is illegal for the beneficiaries of charities to be members of management committees or boards, and that charities cannot be involved in political campaigning. Such details aside, this textbook will be very useful for first-year undergraduates. Controversial Issues in a Disabling Society includes the work of nine different academics and activists, and contains short sections on language, models, genetics, independent living, inclusion, professionalism, charity and globalisation. The range of issues covered means that discussion is sometimes superficial, but it is always lively and varied. Overall, the authors are committed to the disability rights ideology, and question whether traditional approaches – medical treatments, rehabilitation, therapies, care, charities – are appropriate or beneficial for disabled people. Yet, they are often not afraid to challenge the dominant consensus of disability studies. For example, the chapter on genetics points out that some conditions – Huntington's disease, for instance – may be aptly described as 'tragedies'. There is a sympathetic discussion 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 is cited regularly, and the voices of disabled people are woven through every chapter. It is not always clear how representative these opinions are, but they have the undoubted merit of bringing the text alive and grounding it in the everyday experience of disability. Discussion questions and debate activities are offered in each chapter. All this means that the text would be particularly useful for beginners in disability studies, and particularly for professional courses 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 produced for the Open University course on the The Disabling Society in 1993, and became one of the most widely-used readers in disability studies. The same format – short, pithy entries, predominantly authored by disabled people, both activists and academics – has been retained, although the majority of chapters are newly commissioned. All but two of the 45 chapters are from a UK 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 years since the first edition have seen little progress for disabled people, as the dominant picture remains one of discrimination, prejudice, injustice and poverty. This suggestion that nothing has changed remains only an assertion, and one which is undermined by some of the examples offered in subsequent chapters. Many observers might see the passing of the Disability Discrimination Act, and the creation of the Disability Rights Commission as major achievements over this period: the book lacks full and balanced assessment of the impact of either. Second, the claim that any radical change in prospects for a better quality of life can only come from disabled people taking the initiative for themselves. I would perhaps be less purist: given the chequered record of some disabled-led initiatives, and the major contributions which many non-disabled professionals and allies make to the lives of disabled people, the best way forward might not be separatist isolation, but for disabled and non-disabled people and organisations to work together in collaboration. The collection opens with chapters by two of the founding fathers of UK disability studies, Mike Oliver and Vic Finkelstein, who reiterate the political benefits and intellectual coherence of the social model of disability which they have done so much to promote. These perspectives set the tone for the volume, which includes no balanced debate about the social model. Many areas of disabled people's lives are ignored: rehabilitation, living with pain or degenerative illness, the role of surgery and other medical interventions. Nor is there any discussion of the new WHO International Classification of Function, which may offer the potential for moving beyond the now sterile social model/medical model debate, and which has been adopted by Disabled People's International, the global representative body. On the plus side, most non-health related areas of the disability experience are covered, and some of the chapters are excellent. The two middle sections of the book –Controlling life styles and In charge of support and help– give accessible summaries of important fields – for example, leisure, employment, housing, community care and independent living – which will be very useful to the beginner. Several of the chapters draw on research projects, and include the voices of disabled people. However, the quality of entries is uneven, and the book would have benefited from much tighter editing: some of the chapters would set a poor example to undergraduate readers. Overall, I found it a disappointing read. Disability: a Lifecourse Approach is an accessible and well written survey of the literature on different stages of the lifecourse, and is better suited as a sociological introduction to disability. By looking at how impairment and disability impact across the lifecycle – chapters cover the antenatal period, childhood, youth, adult, old age and death – Mark Priestley manages to draw out continuities and parallels, and connect disability studies to wider social science debates on youth, adulthood and ageing, as well as bioethics controversies. Helpful summaries and questions for discussion make it a useful student text, although the breadth of research covered will make the volume valuable to a much wider audience looking for an overview of these issues. Impressive though the volume is, some opportunities for making connections and breaking new theoretical ground were perhaps missed. For example, disability affects non-disabled family members at different stages of the lifecourse: there is important literature on young carers, on siblings of disabled children, and on the impact of caring on partners and adult children, particularly women. By focusing almost exclusively on disabled people themselves, Priestley neglects the impact of disability on non-disabled people, and misses the chance to offer a disability rights-based re-reading of some of these debates. I also looked in vain for a theorization of disability across the individual life span: having distinct chapters on children, youth, adults etc, obscured the fact that most individuals do not experience impairment at every stage of life. There was discussion of how people become impaired in adulthood or old age; it is however also true that some children with impairment grow up to be non-disabled adults. Equally, many children with impairment have shortened life spans. This raises questions about the transition to adulthood: what are the reasonable aspirations of a man with Duchenne muscular dystrophy, who may die at the age of 25 without having left home or attended college or broken away from parental support and control? To greater extent than the first four books, Disability Studies Today offers original insights via essays from a range of British and North American authors which deepen understandings and question core assumptions of disability studies. Useful reviews of American and British disability studies from Gary Albrecht and Carol Thomas open the volume. Bill Hughes contributes an overdue analysis of the relationship between disability studies and the sociology of the body. While mainstream sociology has neglected or medicalised disability, Hughes suggests that disability studies has in turn marginalised impairment. He challenges dualistic thinking and explores the ways in which impairment is social, and disability embodied. Anne Borsay challenges the lack of historical depth within disability theory, and provides an analysis of the surveillance activities which charities and medicine deployed to police disabled people between the late Victorian period and the beginning of World War II. Phil Lee continues the critical theme by analysing the rhetoric of the disability movement and of New Labour. He suggests that some over-simplistic applications of the social model can promote an underdeveloped and fundamentalist politics which inhibits the development of realistic strategies. I particularly appreciated the inclusion of these critical voices within a mainstream disability studies collection. Another welcome feature is the international emphasis, with several chapters exploring the impact of globalisation. Finally, three books which offer analysis based on original research and will be of interest to the disability specialist. Paul Longmore is one of the most important voices in US disability studies, and his collection showcases the four 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 the obstacles which disabled people face in academia. Longmore relates his years of struggle to overcome discrimination, financial barriers and the byzantine US social security regulations, in order to succeed as a disabled academic. At about the same time as I was starting my own postgraduate career, Paul publicly burned his own book, The Invention of George Washington, outside the federal building in downtown Los Angeles to highlight the fact that he was unable to earn a living without the government disability support which enabled him to survive as a disabled person. Most disabled people no longer face the same stark choice between dependency on welfare, and total withdrawal of welfare if they try to survive in the job market. But many disabled people find that their schooling leaves them unable to get the qualifications they need to attend university, or that barriers to participation in higher education prevent them reaching their intellectual potential, or that discrimination from employers makes it impossible for them to use their degrees in subsequent employment. Claire Tregaskis' book reports on research exploring the interface between disabled and non-disabled people, conducted in a leisure centre. Her personal, reflexive style of writing is engaging, and the book casts valuable light on the experience of a person with impairment doing research with non-disabled people. Tregaskis engages with several traditions: mainstream social research methodology; disability studies, particularly the psycho-emotional approach pioneered by Carol Thomas; and Social Role Valorisation. Most UK disability studies authors have either ignored or rejected SRV, despite the importance and influence of ideas about normalisation, particularly in the learning difficulties field. The balanced critique here is very useful. Tregaskis' detailed analysis of interactions between disabled and non-disabled people is fascinating and important. In my opinion, however, she slips into the common disability rights error of seeing oppression in every negative response. For example, when non-disabled people park in disabled parking bays (p.67), I question whether this represents unconscious hatred of disabled people, as opposed to selfishness, lack of respect, or laziness. The danger of an 'emancipatory research' approach is that it may lead to a default explanation of exclusions or difficulties in terms of oppression or institutional discrimination. Tregaskis herself recognises this, in recounting the anecdote of a woman with learning difficulties whom 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 than they would have done with a non-disabled person behaving in similar ways. But for Tregaskis, staff actions on this occasion revealed their underlying assumption that disabled people are eternal children in need of surveillance. Disability, Culture and Identity brings together eleven papers, either reporting on research with various groups of disabled people – young people, older people, Asians, people with learning difficulties, mental health survivors – or exploring broader issues, including multiculturalism and the relationship between deaf and disability studies. Of all the books under review, this was the most valuable to me, because almost all the chapters were based on original empirical research. At first sight it is a rather disparate collection, however dominant themes and inter-connections emerge as the papers are read together. A particularly strong aspect of the book is the focus on how people with different impairments identify, and how these identities are shaped in interaction with other people, and with the dominant structures and values of society. For example, Priestley's research found that older people and their organisations were unwilling to identify as disabled, and had no awareness of social model approaches. Watson recuperates Goffman, showing how everyday interactions are central to the identity of disabled people. Ferguson discusses 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 in some ways is implicitly at odds with the disability rights movement. Several chapters draw on the politics of recognition – Nancy Fraser and Axel Honneth, for example – to give a new perspective on disability studies. Another theme is the possibility of disability culture – or in Mairian Scott-Hill's chapter, deaf or Deaf culture. Paul Darke launches a bitter attack on the arts establishment's neglect and dilution of the liberatory promise of Disability Arts. It is not clear how far his critique is disability-specific: that is, many non-disabled artists have similar complaints about how the arts are funded, and the lack of grassroots participation or political emphasis. In my experience, money has often been forthcoming for cultural organisations controlled by disabled people, but with a few important exceptions, high quality art and artists have not emerged. Whereas Paul Longmore's book includes reviews of several films, and analysis of the main forms of disabling stereotype, the specifics of cultural representation are curiously absent from Riddell and Watson's collection. In this volume, culture refers to ways of living 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 Does He Take Sugar, and its replacement by a mainstreaming of disability issues. Readers of this journal may be particularly interested in how these authors approach issues in the field of healthcare. Disability studies has been criticised for failing to deal with impairment, a challenge which Oliver vigorously refutes in his chapter in Disabling Barriers, Enabling Environments. But these books do almost entirely ignore impairment-related issues which are important to the lives of many disabled people. While bodies do come in – for example, a useful chapter in the Barnes and Mercer introduction, and Bill Hughes's discussion in Disability Studies Today– there is little empirical research or sophisticated exploration of this topic in these pages. There are, however, extensive discussions of the role of medical professionals and professionals allied to medicine. The prevailing attitude to professionals is very negative. For example, it would be easy to conclude from Barnes and Mercer's discussion of medicalisation that disabled people had derived no benefit from the development of health services. The authors of Controversial Issues echo the critique of Oliver and others that non-disabled professionals are parasitical on disabled people, and that professional practice is self-interested, oppressive and abusive. In these texts, diagnosis is always an unwelcome form of labelling, although outside political rhetoric, people with impairment and illness sometimes seek out diagnosis, and feel validated by it. A rather more balanced account is provided by Watson, who shows how interactions with health professionals, while contaminated by ignorance and prejudice, nevertheless can be reformed, not least through the involvement of disabled people in training medical students. Bioethical issues have been prominent in disability politics, and there are extended discussions in three of these volumes. Colin Gobe gives a succinct summary of genetics in Controversial Issues, and by providing a case study of a woman with Huntington's disease, shows that impairment can indeed be a tragedy. Priestley's treatment of 'Birthrights' seems to me less strong than the rest of his volume. Suggesting that selective abortion and prenatal screening are eugenic requires both a definition of the term, and careful exploration of the motives and practices of professionals and prospective parents. Talking about 'right to life' risks moving into the territory of 'foetal rights' and other anti-abortion discourses. Citing phenomena such as late abortion and wrongful birth suits as if they are common rather than exceptionally rare is misleading. Both Priestley and Longmore engage with end-of-life issues. Initially, it appears paradoxical that the disability rights movement supports the autonomy of disabled people in every area except the right to advance directives and assisted suicide. However, Longmore persuasively documents how the disabling contexts and values are the main problems for people with impairment and degenerative illness, as well as exposing the anti-disability prejudices of euthanasia activists. These critiques provide valuable balancing arguments to the individualistic focus on choices and rights which permeate bioethical thinking on this increasingly important issue. Disability activists and materialist theorists may celebrate the absence of bodies and impairment from these books, but it seems to me dangerous for disability studies to neglect medicine and new biomedical technologies. Medical interventions are vital to the survival and rehabilitation of many people who experience impairment as a consequence of disease or trauma. Disability studies has valuable work to do: distinguishing between appropriate and normalising medical therapies; challenging doctors' tendency to define a disabled person's health and status totally with reference to their impairment; analysing the potential, and dangers, of new treatments – such as stem cell research, gene therapy, pharmaco-genetics; asking broader questions about access and equity. Exploration of biomedicine, the role of health professionals and the impaired body is an area where social model ideology seems to have blocked intellectual progress. 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 field of disability studies. Despite the inclusion of some welcome new voices – Tregaskis, Goodley, Carr, Reeve – there are still some who feel that everything important was said 10 years ago, and all that remains is to restate the orthodoxy. Sadly, two of the most innovative and original thinkers – Paul Abberley and Mairian Scott-Hill – died during the preparation of this review. Their willingness to think anew and to make wider connections will be much missed in British disability studies, together with their stimulating companionship. Second, judging by these books, there is still a dearth of empirical research about oppression and exclusion, disabling social relations, and other important aspects of the lives of disabled people. There is much talk about emancipatory research, but less evidence of the voices and experiences of disabled people, or systematic documenting of discrimination and rights-violations. Third, in recent years there have been a series of important academic critiques of the social model approach (Williams 1999, Bickenbach et al. 1999, Shakespeare and Watson 2001) following on from the first wave of disability movement revisionism (Morris 1991, Crow 1996), plus the emergence of the new WHO International Classification of Functioning. Yet, with the exception 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 new perspectives, rethink orthodoxies, engage with critiques, and generate new and better accounts of disabled people's lives and the social exclusion they face. Otherwise it will become ghettoised and irrelevant, forfeiting power and influence in the wider world. None of which is to deny the immense achievement of disability studies over the last 20 years, documented in these pages. It is difficult to think of any other area of social science, since the heyday of feminism, which has been so engaged with social change, and which has made such an impact on the lives of its constituency. Chronic illness or sociology of the body perspectives sometimes make more intellectual sense, but arguably they have not achieved a fraction of the social transformation of disability studies, and nor have they remained accessible to a broader public. This strength of disability studies is demonstrated whenever scholars from other areas draw on social-model and rights-based analysis to cast light on other areas of social exclusion, such as mental illness, HIV/AIDS and old age. The task for disability studies in the next decade is to remain engaged and readable, while deepening the conceptual sophistication and gathering the empirical evidence. In order to do this, I believe that the stranglehold of political ideology has to be broken, and disability studies has to assert its right – and duty – to ask the difficult questions. Here are four important issues which might do for starters: How can we more adequately theorise disability? Clearly it cannot be reduced to an individual medical problem, nor to a socially-created oppression. Disability is an interaction between impaired bodies and excluding environments. Yet even to speak of 'disabled people' as a category is problematic, given the differences between types and causes of impairments, and the interrelation of impairment and disability with other social divisions and identities. Disability theorists need to do justice to the specificities of the experiences of people with learning difficulties, or of mental illness, or of disabled people from different cultural traditions. Biomedicine and assistive technologies offer new options for curing or alleviating illness and impairment. How are these to be assessed? How can the politics of disability identity be reconciled with impairment prevention and cure, rather than the two seen as polar opposites? Independent living: is the direct-payments model the only answer to the support needs of disabled people? Currently, the majority of disabled and older people receive homecare, not personal assistance: how will this balance change in future? Is there a role for some form of reformed residential care? Employment: Paul Abberley drew attention to the continuing problem of those 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? The disabled population is increasingly polarised between those in work and those dependent on benefits: how can the exclusion and immiseration of the latter best be alleviated? In an ageing society, and one in which predictive genetic information reminds us that we are all potentially impaired, engaging with the challenge of different forms of embodiment, and removing the barriers which disable people, 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 disability studies can come together with other research areas – including sociology of health and illness – then the whole field can advance. There is plenty of work for the next generation of disability scholars, and many suggestions in these volumes for how to proceed.