Introduction

This book is my attempt to offer a chart, a better way for disability studies. While I value the achievements that have been won through the close alliance of disability politics and disability research, I think that disability studies has failed to balance the demands of radical social change and intellectual rigour. Translation of ideas and ideologies from activism to academia has not been accompanied by a sufficient process of self-criticism, testing and empirical verification. The British materialist tradition in disability studies that has successfully inspired generations of activists has not translated into an adequate body of good empirical research, perhaps partly because of the reliance on an overly narrow and reductionist conception of disability. Meanwhile, it is my view that the cultural version of disability studies, which also espouses political commitment, has become fatally contaminated by post-structuralist and post-modernist theory, and thus failed to provide helpful analysis or evidence. It is vital to state that in rejecting the ‘strong’ social model of dis-

ability, I am not rejecting the human rights approach to disability (UN, 2006). Many activists and writers appear to believe that the materialist social model is the only appropriate or effective analysis or definition of disability. There seems to have been an assumption that without the ‘strong’ social model, there can be no political progress and no social movement of disabled people. If I believed that this was the case, it would be very much more difficult for me to suggest that the social model should be revised. In the first edition of this book, I demonstrated that the ‘strong’ social

model is not the only progressive account of disability, and explained

how there is a family of social approaches to disability, of which the British social model is just one example: others include the North American minority group approach, the social constructionist approach, the Nordic relational model. All of these approaches reject an individualist understanding of disability, and to different extents locate the disabled person in a broader context. To varying degrees, each of these approaches shares a basic political commitment to improving the lives of disabled people, by promoting social inclusion and removing the barriers that oppress disabled people. In the first edition, I also demonstrated how the term ‘medical model’

is often used as a slur word (Kelly and Field, 1994: 35), concealing the many examples of empirical research within medical sociology and social policy which have made space for environmental and social factors in the construction of disability (Goffman, 1968a, 1968b; Safilios-Rothschild, 1970; Albrecht, 1976; Blaxter, 1976; Carver and Rodda, 1978; Laura, 1980; Locker, 1983; Marinelli and Dell Orto, 1984; Stone, 1984; Hedlund, 2000; see also the discussion in Noreau and Boschen 2010). Even the WHO’s International Classification of Impairments, Disability and Health (ICIDH) was originally an attempt to shift emphasis away from the medical diagnosis towards the social consequences of impairment (Bury, 2000). The first edition of this book was my attempt to offer a way beyond

the impasse of ‘social creationist’ disability studies. While I valued the achievements that have been won through the close alliance of disability politics and disability research, I suggested that the weaknesses of the British approach outweighed the benefits. In this edition of the book, I also look at a ‘social constructionist’ approach, which emerges from the academic work of disabled and non-disabled scholars. Rather than the Marxist theory which underpins the work of Mike Oliver, Colin Barnes and others in the British social model tradition – which in this new edition I am labelling materialist disability studies – the Critical Disability Studies approach is more likely to draw on post-structuralist and postmodernist philosophers such as Michel Foucault, Judith Butler, and Gilles Deleuze and Félix Guettari. This approach to disability often takes a step back from the political commitments of the social model tradition, to explore cultural representations and the role of discourse. Scholars sometimes appear more concerned with deconstructing the category of disability or intellectual disability than in changing the social conditions of disabled people or people with learning difficulties. Responding to the theoretical deficits which I, among others, identified (Shakespeare, 1999b), these scholars have been active in building disability studies as a discipline within academia, particularly in the

North American humanities field. I will argue that Cultural Disability Studies is over-theoretical and does not offer much in the way of practical help in understanding the lives of disabled people, let alone changing them for the better. While there are some interesting examples of empirical social research coming out of this tradition, particularly in Europe, I question whether this approach can advance policy and practice in disability. When it comes to theory, my motto is taken from William of Ockham: ‘Do not multiply entities unnecessarily’, or alternatively, as Einstein once said, ‘Make everything as simple as possible, but not simpler.’ The disability rights movement has gone through different phases,

since its origins in the 1970s. For the first decade, it was primarily an oppositional force, criticising the status quo, and calling for barrier removal and social inclusion. In the second decade, the formation of the Independent Living Fund in 1988, the shift to community care in the early 1990s, and the passing of the Community Care (Direct Payments) Act 1996 not only enabled more disabled people to live in their communities, it also led the disability movement to respond by becoming a major service provider in many localities, as far afield as Avon and Norfolk. Meanwhile, the Disability Discrimination Acts of 1995 and 2005 meant that public buildings and transport services became far more accessible. Now with the global financial crisis and the advent of a deficitreducing Conservative-Liberal Democrat government, austerity has led to cutbacks in both welfare benefits and services, which have often appeared deliberately to be targeted at disabled people (Strathclyde Centre for Disability Research and Glasgow Media Unit 2012, www. wearespartacus.org.uk 2012). The few thousand activists in the core disability movement have not appeared greatly to renew or revise their analysis or ideology during this period, although there have been generational changes as key individuals have retired or died. The ‘strong’ social model that I criticised in the first edition of this book still seems to hold sway. Indeed, the crude dichotomies of the British social model have also strongly influenced international thinking on disability, as expressed, for example, in the UN Convention on the Rights of Persons with Disabilities (UN, 2006). Over the same period, I and others have been writing and talking

about the need for a new approach to understanding disability, which enables research and practice to progress, forms new alliances, and advances an agenda of disability equality. This work has been controversial. However, I suspect that there is support and agreement and interest in new approaches from many quarters, and therefore I have tried to consolidate my ideas and work in different fields in the current volume. The resulting book brings together two decades’ worth of thinking and talking about

disability, bioethics and care. It represents my attempt to establish a balanced, rational and coherent analysis of disability, based on a critical realist approach that will be of value to practitioners, researchers, and disabled people themselves. I have particularly tried to ensure that issues concerning people with learning difficulties are not ignored (Chappell, 1998). The book draws on my experiences of being a disabled person, and

the son, father, husband and friend of disabled people. It has been influenced by my personal experience of disabled people’s organisations and other voluntary organisations. The book draws on qualitative research I have conducted over the past decade, as well as the wealth of research on disability within disability studies and medical sociology. In first writing, and subsequently revising this book, I have tried to ground my discussions in the available empirical research evidence at all times. Too often, disability studies is not grounded in an adequate understanding of what I call ‘actually existing disability’, which means comprehending both the diversity of illness and impairment experiences and contexts, and the breadth of everyday life. Discussions with philosophers and professionals have also been very valuable to me in shaping my ideas. The resulting book therefore reflects an interdisciplinary perspective, drawing on sociology, social policy, social work, philosophy, psychology and development studies. I have tried to be scholarly, but also to orient the discussion towards politics and policy, with a view to supporting progressive social changes that benefit disabled people and their families. The target audience includes disabled people and those who work with them, as well as academics and policy-makers. I have tried to write clearly and accessibly, with a view to helping non-academics think deeper about questions that matter in their lives, as well as contributing to a reinvigorated and empirically-based disability studies.