This paper responds to the reviews by Edwards, Holm, Koch, Thomas and Vehmas of Disability Rights and Wrongs (2006). After summarising the recent history of disability studies as a discipline, it explores: the political nature of disability research, questions of ontology and definition, and the uses and abuses of the expressivist argument. Disability is an emerging field of enquiry and constructive debate is to be welcomed.
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Disability is a complex, scalar, multi-dimensional phenomenon. The social exclusion and devaluation of disabled people is widespread and persistent, both in Britain and worldwide. Developing more adequate understandings of the disability phenomenon and improving the participation and quality of life of disabled people are linked and urgent concerns.
Prevailing approaches to disability have been flawed because they tend to individualise disability, and to neglect the social and environmental contexts which create additional burdens for disabled people, or alternatively facilitate their participation. These problems are characteristic of both mainstream medical ethics (seeing impairment as a problem to be avoided) and medical sociology (dominated by the chronic illness approach). Sometimes these approaches are labelled “medical model” by British disability studies researchers. I object to this practice because it creates a straw person and suggests that medicine is undesirable. Despite the deficiencies of medical sociology and medical ethics, it would be foolish to ignore the many valuable contributions to understanding disability made from these perspectives. Moreover, it is not medicine, but inappropriate medicalisation which is the root of the problem.
Spurred by the unprecedented growth of disabled people’s activism in many countries of the world, disability studies developed as a radical challenge to individualist or over-medicalised ways of thinking. It is now a worldwide discipline, with particular strengths in Britain, USA, Canada and the Nordic countries, but also notable contributions from Australia, France and Germany. Within and between each country, there are differences of emphasis and definition. For example, North American researchers have been influenced by a minority group conception of disability, and latterly have been preoccupied with cultural representation and meaning; Nordic researchers have relied on a relational understanding and have concentrated on evaluating welfare services; British researchers have adopted a strong “social model” conception and explored the role of barriers and oppression in the lives of disabled people. In my book, Disability Rights and Wrongs, I suggested that there is a “family” of social contextual approaches to disability, all of which share the same basic emphasis on the social construction or social creation of the disability problem.
I welcome the growth of disability studies, applaud the commitment to social change, and accept the dominant role of social and cultural contexts and meanings in the creation of the disability problem. My motivation for writing Disability Rights and Wrongs was frustration with the state of disability studies research in the UK, which I believe is often blocked by an unhealthy reliance on the social model of disability and an unquestioning faith in the benefits of identity politics. This is not to deny the valuable work which continues to go on under the banner of disability studies. While the close connection to the lives and political movements of disabled people is a distinctive and valuable aspect of UK disability studies, I believe that it is necessary for academic theory and research to attempt to find the truth, rather than relying on ideology or slogans.
I realised that challenging deeply held beliefs would not be popular. Nor did I have any illusions that my account would be flawless. Therefore I welcome constructive criticism. I am grateful to the editors of this journal for giving space to this symposium, and to the authors who have engaged with my work and given me food for thought. It was my ambition to promote a more open debate about disability and about suitable remedies for the disadvantages faced by disabled people. Where in this journal and elsewhere my arguments have prompted re-evaluation and inspired other researchers, I am grateful for evidence that the hard slog of writing was not wasted.
AS POLITICAL AS LIFE ITSELF?
Thomas and Koch are among those who have regretted my revisionist approach to disability theory and disability politics. Thomas, while seeming to agree with me that the social model is no longer helpful, believes that I may be undermining the discipline of disability studies by washing dirty linen in public. Yet while Thomas is very critical of my rejection of the social model, she concludes by conceding that my position is very close to hers.
To clarify, my objection to the social model is not that it is partisan, but that it is wrong. It fails to capture the complexity of disabled people’s lives. Of course, many disabled people face oppression much of the time. But disability cannot be defined as oppression, because to do so creates a dangerous circularity. It would not be possible to set out to discover whether or not disabled people are oppressed, if disability had previously been defined as oppression. You cannot assume that which needs to be proven. After all, some disabled people may not be oppressed, or may not always be oppressed. Does that mean that they are not disabled? Are there then two groups, “disabled people” and “people with impairment”? What about the ways in which disabled people are disadvantaged by factors which cannot be reduced to oppression?
Thomas’ over-reliance on the notion of “disablism” risks similar reductionism, creating a false analogy with racism. For example, people with intellectual impairments or dyslexia are disadvantaged by living in societies based on written information and expecting high levels of literacy and education. But this does not constitute oppression, any more than snow and ice or floods constitute oppression for people with mobility impairments. Not all barriers are discriminatory. Where people are penalised, through no fault of their own, because they are unable to read or get around, then societies which aspire to being inclusive and egalitarian have a duty to compensate such individuals. Failure to do so effectively undermines a society’s claim to fairness and humanity. In other words, there are important additional steps to be made in the argument.
Disability is always an interaction between individual factors—predominantly impairment, aspirations and motivations and contextual factors—environments, policies, barriers and so forth. As Thomas has spotted, my approach to disability is unoriginal, and largely compatible with the WHO International Classification of Functioning, Disability and Health. Discrimination and prejudice almost always play a major part in the lives of disabled people. But disabled people also face other difficulties arising from the predicament of having impaired bodies or minds.
I do not pretend to have an original critique of the social model. In my book, I cite many authors inside and outside disability studies who have made similar claims. But I disagree with Thomas when she suggests that British disability studies has taken on board these criticisms and developed a more sophisticated approach. Over the last ten years, I have often witnessed younger researchers trying to take a more nuanced approach, but being sidelined by an older generation of academics who still repeat the crude formulas from the 1970s, or by activists who are deeply suspicious of university research and who want their ideological viewpoints reinforced, rather than challenged.
Koch and Thomas claim that by challenging the social model, I am seeking to depoliticise disability research, and that I have become an enemy to disability rights. Not so. I think that academic research has an important role to play in developing more adequate understandings of the social exclusion and discrimination that many disabled people face. For example, the evidence which researchers can gather empirical evidence about disabling barriers and prejudices can help lever change and publicise oppression.1 Again and again in my own work I have tried to do this. I also agree that social researchers should be politically engaged, and my political work to promote disability rights over the last two decades shows that I have always been so engaged. Regardless of my scepticism towards one particular current in disability studies thinking, I will continue to work for disability equality both as a researcher and as a campaigner.
With Vehmas, I believe that while academics should be engaged with contemporary political issues, they should also aspire to the best possible standards of data collection and analysis. If they allow their moral, emotional or political preconceptions or affiliations to contaminate their research, then they will produce shallow data or misleading arguments which will be incapable of serving broader political objectives. I accuse sections of the British disability studies community of sometimes demonstrating exactly these failings. As Vehmas argues, science and ideology must be kept separate as far as possible. Biased research will never persuade the media or the government that change is needed.
Thomas is astonished that I do not mention the journal Disability and Society. She overlooks the fact that I cite no less than 112 separate articles from the journal or its earlier incarnation Disability, Handicap and Society. While I value the leading role that the publication has taken, the partisan nature of its editorial policy seems to me to be dangerous to the discipline. Often, papers are refereed and books are reviewed according to ideological rather than intellectual criteria. These experiences leave me unable to share Thomas’ positive evaluation of the journal.
Koch claims that I do not acknowledge that social and workplace discrimination remains a reality for many persons. While space limitations meant that the current book does not engage with employment, I do make clear in the text that disabled people face such barriers, and in other research—for example with people with restricted growth—I have demonstrated and analysed those barriers in some detail. Incidentally, I think that the employment situation of disabled people is complex. While there is considerable evidence of extensive unfair discrimination, it is also the case that many disabled people are limited in the type of work they can do, or the amount of work they can do, because of their impairments. Additionally, some disabled people lack the training, confidence or motivation to work, while others would prefer to rely on welfare benefits than enter the labour market. Thinking solely in terms of employer discrimination rather than this wider range of factors limits our understanding of the stubborn and persistent nature of disabled people’s exclusion from the workforce.
Koch also claims that my arguments have been disowned by the disability studies and disability rights community. Certainly, some activists and researchers have been hurt and angered by my approach. But many others have responded very positively to my attempt to open up a more nuanced space for understanding disability. Unsolicited comments such as “stimulating and thought provoking”, “a breath of fresh air”, “a real breakthrough” have arrived in my email inbox from dozens of disabled researchers. They do not agree with all my arguments but accept the constructive intention behind my book and share my commitment to improving the intellectual rigour of disability studies. Koch appears worried about my possible ostracism among the disability movement, but I am glad to report that my contributions continue to be in demand among disabled and non-disabled audiences.
Koch questions how I can claim to be disabled. I believed I had discussed this point in the introduction to my book, but let me reiterate. I have restricted growth, which has caused me increasing physical limitation and pain over the last ten years. From my research with other restricted growth people, I note that most suffer similarly, and some end up reliant on wheelchairs. Every single time I leave my home I experience staring and negative comments, and distressingly commonly I experience hostility and abuse in public spaces. As I previously explained, due to intellect and class privilege, I have avoided many of the economic and social disadvantages to which many other restricted growth people are vulnerable, but it is incorrect to say that I am never socially disadvantaged or publicly ostracised. Someone who knows nothing about my life has no right to suggest that my identification as a disabled person is inappropriate.
Koch advocates a constructionist approach and approves of those who take a Foucauldian line. In earlier years, I found Foucault intellectually invigorating, and many of my publications betrayed the influence of his arguments. I collaborated with the late Mairian Corker in editing a volume which brought post-structuralist and post-modern approaches to bear on disability.2 Latterly, I have come to the conclusion that Foucault is of more use if you are seeking to build an academic career than if you are seeking to change society. I object to the esoteric and inaccessible language and arguments which contaminate many recent offerings in disability studies—whether influenced by Foucault himself, or by Deleuze and Guattari or other fashionable Continental theorists. I also question whether the postmodern opposition to emancipatory metanarratives and universal ethical norms undermines the potential of these approaches for achieving the political goals of subaltern groups.3
However, as Edwards has spotted, traces of my earlier thinking remain in the book, which he suggests creates inconsistencies. In combining and revising earlier material to form the book, I may have left hostages to fortune, and I regret that. But I do not think there is any basic contradiction in my approach.
Different cultures, across space and time, have defined human variation in different ways. For example, schizophrenia or epilepsy have sometimes been regarded as spirit possession, to be exorcised. Equally, only when society has developed certain expectations of its members does the lack of ability to fulfil those expectations become obvious and problematic. For example, dyslexia remains hidden until society demands literacy in order for people to be able to achieve employment. Moreover, given that impairment is often scalar—for example, there is not a polar distinction between blindness and vision, but a continuum of visual acuity—legal and welfare systems have to define how much visual impairment constitutes blindness, for official and administrative purposes. Therefore there are process of social definition and meaning inherent in the categorisation of impairment, and in the identification of disabled people. Equally, the ways in which societies define and categorise physical and mental differences have implications for the way in which people with those differences live their lives.4
However, to accept this obvious point does not mean adopting a relativist position, or signing up with the anthropologists and the postmodernists. Critical realists make a distinction between ontology and epistemology. There has always been dyslexia or schizophrenia, regardless of how societies have understood and defined it. Epilepsy remains an organic brain phenomenon, even if a tribal group defines it as spirit possession. In many circumstances, impairment is problematic in itself, as well as having broader cultural and political consequences.
Whereas social constructionism has been welcomed as a tool for political change, it may prove a false friend, as I long ago argued.5 For those with hidden impairments, such as dyslexia or chronic fatigue syndrome, a realist and medically based approach to defining and understanding impairment is preferable to the vagaries of constructionism. Many disabled people long for a diagnosis to entitle them to welfare benefits and other exemptions, and it is hard to see a practical alternative to administering the complex entitlements consequent on disability.
Koch cites approvingly the Canadian Down Syndrome Society’s redefinition of Down syndrome as a normal condition rather than an affliction, disease, defect or disorder. While lauding the humanity of their initiative, I am uncomfortable with the ease with which they adopt the relativist position. For example, if Down syndrome is just a social construct, then does that imply that the various medical and surgical interventions to help people with Down syndrome should be dispensed with? My friends with Down syndrome have variously suffered major cardiac malformations, gastro-intestinal problems and hearing loss. I understand that they have a higher likelihood of experiencing Alzheimer disease in later life. All these dimensions of the syndrome, together with the intellectual impairments which they also experience, result from having three copies of chromosome 21. None of this means that David, Charlie, Amy, Billy and the rest are less worthy of respect or inclusion. I count myself privileged to have known them. But I wonder how much it helps them to pretend that they are simply different, rather than disabled. It is not clear what is meant by saying that Down syndrome is a “natural genetic variation occurring in human society”. Of course that’s true, just as it’s accurate to describe HIV a natural virus occurring in human society. But Down syndrome is neither statistically normal nor, in my view, a neutral difference. It is a predicament which makes life harder, and I can understand why some prospective parents might wish to avoid it in their children.
An opposite error seems to be made by Thomas.6 She bases her approach on the social model dichotomy between impairment and disability, leaving the former to the medical sociologists and defining the latter solely in terms of oppression, and reserving it for disability studies. It would be wrong to think that medical sociology ignores socio-political issues, and dangerous for disability studies to ignore questions of impairment and the body. I would prefer to see the field of disability studies including both domains and overcoming the crude dualism, the better to understand the complex dialectic of disability.
Holm and Vehmas worry that I have too easily dismissed the expressivist objection to prenatal diagnosis. While I am sceptical about the expressivist argument—which as Holm usefully demonstrates comes in different versions—I accept that it does important work in forcing us to attend to the ways in which prenatal diagnosis—or other techniques of impairment prevention—potentially send negative messages about the lives of existing disabled people. I strongly concur with Holm’s suggestion that actually existing prenatal diagnosis is deficient in many respects. I do not think, contra Koch’s critique, that genetic testing is value neutral. In my book, I draw attention to negative language, to the prejudices of certain professionals, to lack of informed consent, and to the ways in which the social and cultural context is discriminatory. Among the implications of the evidence which I summarise are that we urgently require institutional reform of prenatal diagnosis, better training of doctors and allied professions, and better provision of support to disabled people and their families.
It is the strong version of expressivism which I find dubious. I do not accept that those couples who seek to discover information about their pregnancy and make the painful decision to end a pregnancy where impairment is detected are thus inevitably discriminatory or prejudiced against disabled people. It is possible, and sometimes it is undoubtedly the case they might have such motivations. But some impairments not only make the lives of those who experience them more limited and burdensome, but also correspondingly disrupt the lives of those who care for them, and it seems to me rational and humane for potential parents to seek to avoid such outcomes. Equally, it is understandable that some disabled people are hurt and threatened by this. I have often experienced those feelings myself, when I have heard discussion of the desirability of preventing the birth with individuals with disabilities.
Several important distinctions are necessary here. Negative valuation of the lives of disabled people are often based on prejudice, but are sometimes founded on evidence. Some disabled people do experience very poor quality of life, and sometimes the lives of some parents and carers are also limited as a result. But the fact that someone’s quality of life is assessed to be low does not have necessary implication for the value of their life, nor of its worth to them and to those who love them. It may be a complex balancing act, but it is possible—indeed desirable—to cherish and support and include existing disabled people, even while investing in measures which might minimise the impact of disability on future generations. Clinicians, philosophers and prospective parents have an obligation to be sensitive and respectful when they come to discuss disability and screening. So, of course, do social scientists and activists.
Better understanding and more regular exchange between the fields of medical ethics and disability studies would be desirable. It was one of my goals in writing my book to help each community understand more of the other’s arguments and concerns. Forthcoming publications will further aid in this endeavour.7 8 I believe that it is necessary for philosophers to understand the structural approach to disability, and the political concerns which underpin disability studies. Equally, it is desirable for disability studies scholars to refine and strengthen their arguments, and to understand the diversity of philosophical responses to the challenge of disability. I value the role of this journal in facilitating this necessary and stimulating exchange, and thank the other contributors for their attention to my work.
Competing interests: None.
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