Disability Rights and Wrongs Revisited

Tom Shakespeare

• Publisher: Routledge
• Year: 2013
• ISBN:
  9781134577668
• Edition: 2
• Topic: Medicine
• Subtopic: Health Care Delivery

Over the last forty years, the field of disability studies has emerged from the political activism of disabled people. In this challenging review of the field, leading disability academic and activist Tom Shakespeare argues that disability research needs a firmer conceptual and empirical footing.

This new edition is updated throughout, reflecting Shakespeare's most recent thinking, drawing on current research, and responding to controversies surrounding the first edition and the World Report on Disability, as well as incorporating new chapters on cultural disability studies, personal assistance, sexuality, and violence. Using a critical realist approach, Disability Rights and Wrongs Revisited promotes a pluralist, engaged and nuanced approach to disability. Key topics discussed include:

• dichotomies – going beyond dangerous polarizations such as medical model versus social model to achieve a complex, multi-factorial account of disability
• identity - the drawbacks of the disability movement's emphasis on identity politics
• bioethics - choices at the beginning and end of life and in the field of genetic and stem cell therapies
• relationships – feminist and virtue ethics approaches to questions of intimacy, assistance and friendship.

This stimulating and accessible book challenges disability studies orthodoxy, promoting a new conceptualization of disability and fresh research agenda. It is an invaluable resource for researchers and students in disability studies and sociology, as well as professionals, policy makers and activists.

1

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 disability, 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 deficit-reducing 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.

Outline of the book

Part I, ‘Foundations’, tries to establish some firm foundations for understanding disability. I think it is reasonable to suggest that there are currently at least four approaches to disability on offer within the social sciences. First, there is the sociology of chronic illness. Helpfully, Carol Thomas (1999, 2007, 2012) has explored this tradition in some depth. Although I do not fully accept her critique of medical sociology, I do not want to repeat her good work, and I do not have space to discuss this literature here. Second, there is the social model-inspired British materialist tradition, exemplified by the work of Michael Oliver and Colin Barnes and Carol Thomas. Third, there are the various approaches that emphasise discourse and the role of culture, which I have labelled ‘cultural disability studies’. These include the dominant North American disability studies authors, recent arrivals such as Rob McRuer and Fiona Kumari Campbell, and also authors who propose the term ‘Critical Disability Studies’ for their approach, such as Dan Goodley, Helen Meekosha and Russell Shuttleworth. These authors ‘trouble’ the category of disability, and emphasise the role of discourse rather more than the impact of material forces. Reviewers suggested that I devote attention to them in the second edition, and I have complied with this request, with a reluctance that should become evident by the end of the chapter. Fourth, I want to aggregate an even more diverse set of approaches that rely on a realist or critical realist ontology and seek to establish a relational understanding of disability. Many of the researchers within the Nordic countries adopt this perspective, and I am happy to locate myself in this emerging tradition which seeks to provide adequate empirical evidence on how disability arises as a complex interaction of factors. To offer a crude headline, people are disabled by society and by their bodies and minds. Finally, Part I ends with Chapter 5 exploring the complex issues in disability identity, questioning whether the disability rights movement can represent the diversity of disabled people, and suggesting that identity politics may cause more problems than it solves.

I realise in retrospect that Part II, ‘Applications’, reveals the sociological and philosophical issues which most interest me. My predominant focus is the relationships between people and their experiences in the most personal areas of life. The intellectual approach is multi-disciplinary, bringing together social, psychological and ethical concepts and evidence. I am interested in roles and responsibilities, feeling and emotions, and duties and values. These come together when we need to understand issues such as prenatal diagnosis, end-of-life support and assistance, families, friendship, love and sex, and even violence. It is not that I think that education and housing and transport are unimportant, far from it. But I do confess to finding them less interesting, on a personal level. For me, it is the relational aspects of life that are of the greatest fascination.

My academic journey

Like all researchers, my personal background and experience of disability have influenced my work in disability studies, and in the first edition of this book, I felt it was appropriate to include a brief description of my own journey, describing how I was born with achondroplasia, and how my father and children shared this restricted growth condition. After 2006, my life changed in two ways. First, I went to work at the World Health Organization, the technical agency for health within the United Nations system. The major part of my responsibilities was to contribute to the writing and production of the first World Report on Disability (WHO, 2011), published in association with the World Bank, and to promote barrier removal and mainstreaming throughout WHO. For the first time, I had to learn about disability on a global scale: not only was our team prioritising research from low- and middle-income countries, but also I was to travel widely in our efforts to launch the World Report and promote disability inclusion. Moreover, such a report has to be based solely on facts: no opinion, no ‘advocacy’, but simply the scientific evidence, which meant refereed articles, reports of human rights bodies, and reliable statistics. The consultation, editorial, refereeing and editing process which the team undertook to produce a reliable report was the most rigorous intellectual exercise I have ever experienced, and I have huge respect for the WHO’s Alana Officer, who oversaw the efforts of our small team and who, together with Aleksandra Posarac from World Bank, achieved such success with the World Report. I think that the World Report on Disability will contribute very significantly to the impact of the UN Convention on the Rights of Persons with Disabilities (UN, 2006). I was delighted, at the age of 45, to have such a huge learning experience, and I returned to academia in 2013 with a new global interest and a strengthened commitment to the best available scientific evidence, which I hope is reflected in the improvements to this volume.

Less welcome was becoming paralysed in 2008. My incomplete spinal cord injury (L2) was a complication of achondroplasia, and developed over a few days after a summer of pain from a prolapsed disc. I underwent spinal surgery, and spent ten weeks in rehabilitation, learning how to use a wheelchair, manage bowel and bladder, and maximise my functioning. Physiotherapy continued as an outpatient for two years, during which time I was lucky enough to regain the ability to weight-bear and walk with difficulty. However, I am still currently dependent on a wheelchair for most of the day. Acquiring an impairment in addition to my congenital impairment was very difficult. I had experienced pain and limitation throughout my adult life, but now I was dependent and restricted. I experienced my increased disability as resulting more from my own lack of functioning than as a result of inaccessible environments, although of course I have experienced my share of those. This change in my life expanded my understanding of disability greatly. For example, for the first time I now understood the significance and value of rehabilitation, which has been a very neglected topic in disability studies. However, this experience reinforced rather than challenged my rejection of the ‘strong’ social model. I remain convinced that the relational account of disability that I provided in the first edition of this book is the best way of understanding the complex and multi-dimensional experience of disablement. Now I have returned to academic life, I hope to apply my learning to develop engaged and useful research about disability both in Britain but also in the majority world.

PART I

FOUNDATIONS

2

MATERIALIST APPROACHES TO DISABILITY

Few new truths have ever won their way against the resistance of established ideas save by being overstated.

(Isaiah Berlin, Vico and Herder (1976))

Introduction

The social model of disability has been called ‘the big idea’ of the disability movement (Hasler, 1993). To many, it appears to be the fundamental political principle that both first initiated and now sustains the disability rights challenge to mainstream society. Both in Britain but also increasingly on the global disability rights stage, the term ‘social model’ has become synonymous with progressive approaches to disability, while ‘medical model’ sums up everything which is backward-looking and reactionary.

Neither in this chapter, nor in my wider disability research, do I reject the idea that disability is powerfully shaped by social forces. In the first edition of this book I wrote of the ‘family of social contextual approaches’, of which the British social model is a leading example. The role of factors such as the environmental, social and economic policies, cultural representations, individual attitudes in disabling people with health conditions cannot be denied. In North America, Australia and other countries, activists and scholars talk of the social model, but generally as a looser social-contextual concept, often entwined with a minority group approach (Hahn, 1988, 1985; Davis, 1995). However, in this chapter I want to focus on the British version of the social model, sometimes also called the ‘strong social model’.

The British social model itself is a very simple and brief statement that turns the traditional definition of disability on its head. As the Union of Physically Impaired Against Segregation (UPIAS) activists argued: ‘In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society’ (UPIAS, 1976: 3).

The benefits of all social approaches are that they shift attention away from individuals and their physical or mental deficits to the ways in which society includes or excludes them. Mike Oliver (1990) coined the term ‘social creationist’ to describe the British social model approach, distinguishing it from both the biological determinism of the ‘medical model’ and the less materialist approaches associated with social constructionism (discussed in Chapter 3). Like social constructionism, the materialist approach signals that the experience of disabled people is dependent on social context, and differs in different cultures and at different times. Rather than disability being inescapable, it becomes a product of social arrangements, and can thus be reduced, or possibly even eliminated. However, unlike the social constructionist approach, social creationism roots the problem firmly in material social forces and physical environments, not just ideas, cultures and discourses.

The redefinition of disability in the British social model parallels the feminist movement’s redefinition of women’s experience in the early 1970s. Anne Oakley (1972) and others had distinguished between sex – the biological difference between male and female – and gender, the socio-cultural distinction between men and women, or masculine and feminine. The former was biological and universal, the latter was social, and specific to particular times and places. Thus, it could be claimed that sex corresponds to impairment, and gender corresponds to disability. The disability movement was following a well-established path of de-naturalising forms of social oppression, demonstrating that what was thought throughout history to be natural was actually a product of specific social relations and ways of thinking.

The British social model was crucial to the disability movement for two reasons. First, it identified a political strategy: barrier removal. If people with impairments are disabled by society, then the priority is to dismantle these disabling barriers, in order to promote the inclusion of people with impairments. Rather than pursuing a strategy of cure or rehabilitation, it is better to pursue a strategy of social transformation. In particular, if disability could be proven to be the result of discrimination (Barnes, 1991), then campaigners for anti-discrimination legislation saw civil rights – on the model of the Americans with Disabilities Act, and the British Equal Opportunities and Race Relations laws – as the ultimate solution....