Disability Studies: A Student's Guide
Publication Year: 2014
This textbook brings together a wide range of expert voices from the field of disability studies and the disabled people's movement to tackle the essential topics relevant to this area of study. From the outset disability is discussed from a social model perspective, demonstrating how future practice and discourse could break down barriers and lead to more equal relationships for disabled people in everyday life.
An interdisciplinary and broad-ranging text, the book includes 50 chapters on topics relevant across health and social care. Reflective questions and suggestions for further reading throughout will help readers gain a critical appreciation of the subject and expand their knowledge.
This will be valuable reading for students and professionals across disability studies, health, nursing, social work, social care, social policy and sociology.
- Front Matter
- Subject Index
- Chapter 1: Access
- Chapter 2: The Affirmation Model
- Chapter 3: Ageing
- Chapter 4: Alienation
- Chapter 5: Barriers
- Chapter 6: Bodies
- Chapter 7: Care
- Chapter 8: Charity
- Chapter 9: Citizenship
- Chapter 10: Disability Arts
- Chapter 11: Disability Research
- Chapter 12: Disability Studies
- Chapter 13: The Disabled People's Movement
- Chapter 14: Discrimination
- Chapter 15: Education (Post-Compulsory)
- Chapter 16: Education (School)
- Chapter 17: Eugenics
- Chapter 18: Families
- Chapter 19: Feminist Disability Studies
- Chapter 20: Harassment and Hate Crime
- Chapter 21: The Historical Construction of Disability
- Chapter 22: Humour
- Chapter 23: Identity
- Chapter 24: Impairment
- Chapter 25: Inclusion
- Chapter 26: Independent Living
- Chapter 27: International Perspectives
- Chapter 28: Intersectionality
- Chapter 29: Language
- Chapter 30: Media Representations
- Chapter 31: The Medical Model
- Chapter 32: Narrative
- Chapter 33: Need
- Chapter 34: Normalcy
- Chapter 35: Oppression
- Chapter 36: Personalisation
- Chapter 37: The Personal Tragedy Model
- Chapter 38: Professionals
- Chapter 39: Psycho-Emotional Disablism
- Chapter 40: Resilience
- Chapter 41: Rights and Legislation
- Chapter 42: Service Users' Organisations
- Chapter 43: Sexuality
- Chapter 44: The Social Model
- Chapter 45: Sport
- Chapter 46: Stereotypes
- Chapter 47: Stigma
- Chapter 48: Traveller Identity
- Chapter 49: Vulnerability
- Chapter 50: Welfare Reform
[Page ii]SAGE has been part of the global academic community since 1965, supporting high quality research and learning that transforms society and our understanding of individuals, groups, and cultures. SAGE is the independent, innovative, natural home for authors, editors and societies who share our commitment and passion for the social sciences.
Find out more at: http://www.sagepublications.com
Editorial arrangement, Introduction, Chapters 2, 4, 6, 7, 8, 11, 13, 14, 20, 21, 22, 23, 24, 25, 30, 31, 34, 35, 37, 44, 45, 46, 47, 49 © Colin Cameron 2014
Chapter 1 © Tony Heaton 2014
Chapter 3 © Sarah Keyes 2014
Chapter 5 © Laurence Clark 2014
Chapter 9 © WaiYeen Peng 2014
Chapter 10 © Colin Hambrook 2014
Chapter 12 © Colin Cameron and Michele Moore 2014
Chapter 15 © Nicola Martin 2014
Chapter 16 © Dawn Benson 2014
Chapter 17 © Emmeline Burdett 2014
Chapter 18 © Alison Wilde and Adele Hoskison-Clark 2014
Chapter 19 © Ana Bê 2014
Chapter 26 © Florence Garabedian 2014
Chapter 27 © Michele Moore 2014
Chapter 28 © Sarah Woodin 2014
Chapter 29 © Rebecca Mallett and Jenny Slater 2014
Chapter 32 © Tanya Titchkosky and Rod Michalko 2014
Chapter 33 © Larry Arnold 2014
Chapter 36 © Alan Roulstone 2014
Chapter 38 © Toby Brandon 2014
Chapter 39 © Donna Reeve 2014
Chapter 40 © Katherine Runswick-Cole and Dan Goodley 2014
Chapter 41 © Joanne Brown 2014
Chapter 42 © Peter Beresford 2014
Chapter 43 © Margrit Shildrick 2014
Chapter 48 © Rosaleen McDonagh 2014
Chapter 50 © Bill Scott 2014
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[Page v]To Maggie
Oh I love to be a cripple
Not a Raspberry or Ripple
But a downright dirty cripple(Garry Robson, ‘Raspberry’, 2010)
About the Editor and Contributors[Page xi]
Larry Arnold is an autistic activist and academic who has been involved in the disability movement since the early 1980s. He seeks to redefine normalcy as only one of the many ways of being human. He is what he is, not what he could never be, and never what he isn't.
Ana Bê is currently a doctoral candidate at Lancaster University. Her research is located primarily in Disability Studies and feminist theory. More about her can be found at http://www.AnaBeOnline.com.
Dawn Benson is a senior lecturer in Disability Studies and inclusive education at Northumbria University, Newcastle upon Tyne. She is a parent of disabled teenagers.
Peter Beresford OBE is professor of social policy and director of the Centre for Citizen Participation at Brunel University. He is a long-term user of mental health services and Chair of Shaping Our Lives, the national independent user-controlled organisation and network.
Toby Brandon is a reader in disability and mental health at Northumbria University, Newcastle upon Tyne. He has published around disablist hate crime, advocacy and disability theory, and is a review editor for the international journal Disability & Society. He is also Chair of the charity Disability North.
In 2012 Joanne Brown graduated with first class honours in BA Joint Honours Disability Studies at Northumbria University, Newcastle upon Tyne, in 2012. She completed her MRes in Social Sciences at Northumbria in 2013, and has recently been accepted to commence doctoral study at the University of Glasgow.
Emmeline Burdett gained her PhD from University College London in 2011. Her research interests include disability and bioethics, and representations of disability in history and literature. She is a book reviewer for H-Disability.
Colin Cameron is a senior lecturer in Disability Studies and social work at Northumbria University, Newcastle upon Tyne. He is a member of the boards of directors of Disability Arts Online, Lothian Centre for Inclusive Living and Shaping Our Lives, and of the editorial board of Disability & Society.
Laurence Clark divides his time between research and consultancy through his company Difference Matters and performing stand-up comedy. Research interests include personalisation, access to information and media representations of disabled people. He lives in Liverpool.
[Page xii]Florence Garabedian is chief executive of Lothian Centre for Inclusive Living. She is also Chair of Self-directed Support Scotland and works closely with Inclusion Scotland and Independent Living in Scotland.
Dan Goodley is professor of Disability Studies and education at the University of Sheffield, a proud dad to two girls and a fan of Nottingham Forest. Recent writing includes Disability Studies: An Interdisciplinary Introduction (2011).
Colin Hambrook is a disabled artist and founder/editor of http://disabilityartsonline.org.uk – a unique journal dedicated to showcasing the artistic practice of disabled artists, writers and performers through blogs, reviews and discussion. He lives in Hove, East Sussex.
Tony Heaton OBE is the chief executive officer of the disability arts organisation Shape and is a practising sculptor with a long involvement in the creative, social and political aspects of disability. He lives and works in London.
Adele Hoskison-Clark is a disabled parent, the mother of two boys, Tom and Jamie. She is currently undertaking an MA in Social Work at Lancaster University. Her dissertation focused on self-directed support and disabled parents. She lives in Liverpool.
Sarah Keyes is currently a researcher in ageing and dementia in the School of Health and Social Science at the University of Edinburgh. Her work focuses on meaningful involvement of people with dementia within research processes that impact on the development of inclusive policy and practice.
Dr Rebecca Mallett (Senior Lecturer in Education and Disability Studies, Sheffield Hallam University: firstname.lastname@example.org). Rebecca's main research areas include ‘disability’ in popular culture, methods of interpretation within Cultural Disability Studies and, more recently, the commodification of impairment categories, such as ‘autism’.
Nicola Martin is Principal Lecturer at London South Bank University. She is an Honorary Visiting Fellow at Cambridge University and editor of The Journal of Inclusive Practice in Further and Higher Education. Her research interests include critical Disability Studies, identity, autism and post-school inclusion.
Rosaleen McDonagh is a feminist disabled Traveller living in Dublin. Active in disability and Traveller politics for many years, she has written for theatre and TV, and has had several of her plays performed in Ireland.
Rod Michalko taught Disability Studies at the University of Toronto and is now retired. He has written three books and numerous articles. Rod is currently writing fiction with the theme of blindness.
Michele Moore is professor of inclusive education at Northumbria University, Newcastle upon Tyne, and editor of the leading international journal Disability & Society. Her current research is concerned with understanding international perspectives on disability to advance the global agenda for inclusion.
[Page xiii]WaiYeen Peng graduated with first class honours in BA Joint Honours Disability Studies at Northumbria University, Newcastle upon Tyne, in 2012. She is currently engaged in postgraduate study at Northumbria to gain Early Years Professional Status.
Donna Reeve is an honorary teaching fellow at Lancaster University with research interests in psycho-emotional disablism, identity, the body, social theory and disability.
Alan Roulstone is professor of disability and inclusion at Northumbria University, Newcastle upon Tyne. He has researched, taught and written on disability issues for over twenty years, and aims to produce research with disabled people which furthers the struggle towards a more enabling society.
Katherine Runswick-Cole is Senior Research Fellow in Disability Studies and Psychology at Manchester Metropolitan University, Manchester. Much of her research focuses on the lives of disabled children, young people and their families. She has published extensively in the area and is co-editor of Disabled Children's Childhood Studies: Critical Perspectives in a Global Context (2013, Palgrave).
Margrit Shildrick is professor of gender and knowledge production at Linköping University, Sweden, and adjunct professor of critical Disability Studies at York University, Toronto. Her publications include Dangerous Discourses of Disability, Sexuality and Subjectivity (2009), as well as several other books and edited collections and many journal articles.
Bill Scott is the manager of Inclusion Scotland, a national network of disabled people's organisations funded by the Scottish Government. He lives in Edinburgh.
Jenny Slater is a lecturer in education and Disability Studies at Sheffield Hallam University. Her research interests include the intersections of disability, youth, gender and sexuality.
Tanya Titchkosky teaches Disability Studies in the Department of Humanities, Social Science and Social Justice Education at the University of Toronto, Canada. Her writing includes The Question of Access: Disability, Space, Meaning (2011); Reading and Writing Disability Differently (2007); and Disability, Self and Society (2003).
Alison Wilde is currently lecturer in special educational needs (SEN) and inclusion in the School of Education, Bangor University, Wales. Her teaching and research is primarily in the areas of SEN and inclusion, Disability Studies and cultural/media representation.
Sarah Woodin is a research fellow in sociology and social policy at the University of Leeds. Her research interests focus on disability and independent living in its broadest sense.
There are a number of people I would like to thank for their involvement in the emergence of this book. Nigel Stinton, for the conversation on the train from Alnmouth during which I first thought of it. Sarah Gibson, Emma Milman and Katie Forsythe at Sage, for their support during the production process. The Joint Hons. Disability Studies students at Northumbria, for the opportunity to develop and rehearse my ideas. Professor Kath McCourt and Gerry Rice, for the sabbatical leave without which I couldn't have managed to get so much of it organised and written. Everyone else in the contributors list, for agreeing to write the other chapters and then doing so. Gordon Cameron, Maggie Cameron, Andie Reynolds, Esther Woodbury, Martin Sarosi and Dr Donald Cameron, for reading various chapters at various stages and giving generally very helpful advice. Paula Curtis, for coming up with just the right quote at just the right time. Dr Emmeline Burdett and Professor Michele Moore, for their assistance with editing. Finally, David Feingold, for the permission to use his artwork on the front cover. To all of you, again, many, many thanks.
An editorial in The Guardian newspaper in January 2013, reflecting on the achievements of the 2012 London Paralympic Games, contained the following statement: ‘A nation learned to see through disability – to the person inside’ (The Guardian 2013). An article in The Observer newspaper a couple of months later stated that ‘We extend greater understanding to people with disabilities, especially those who overcome their disadvantages in competition’ (Porter 2013). Reading both of these made me groan and wonder how supposedly high-quality, well-informed broadsheets can still – after more than four decades of campaigning by disabled people – get it so fundamentally wrong. To start with, apart from making a dodgy Cartesian body/person distinction, the first statement suggests that a view which overlooks impairment is in some way progressive. This is quite contrary to the thinking developed by the disabled people's movement, which argues that our impairments are a core part of who we are and are important in having shaped the experiences that have made us who we are. To suggest that it is a kindness to overlook a disabled person's impairment is as absurd and insulting as to suggest it is a kindness to overlook a woman's gender or a black person's skin colour – both ways of thinking which have long been consigned to the dustbin of ludicrous historical ideas. The second statement suggests that greater understanding is a favour to be bestowed by the non-disabled on disabled people, on condition that disabled people acquiesce with a view that identifies disadvantage as caused by impaired physicality and take responsibility for overcoming disadvantage through individual effort. This is not understanding, it is tolerance. It suggests that disabled people will be tolerated so long as they acknowledge their own deficit and their need to change. It is paternalistic and carries what Read (2000: 33) has described as ‘a strong whiff of charity’. The disabled people's movement argues that disabled people's disadvantage is structural and is caused by physical and social barriers – such as the attitudes revealed in these two statements. We really don't seem to have come far since Miller and Gwynne (1972: 44) wrote over forty years ago:
in many respects the cripple has ‘never had it so good’. Public attitudes are less prejudiced, more enlightened. Children are taught not to laugh at cripples but instead to sympathise with them as unfortunate fellow-beings.
The self-congratulatory tone persists. While it is still being announced that society's views towards disabled people are becoming less prejudiced and more enlightened there remains an attachment to a way of thinking unable to regard impairment other than as misfortune. Whether impairment is to be sympathised with, ‘looked through’ or transcended, it is consistently looked upon as a regrettable attribute with the potential to reduce its bearer in the eyes of others. This is a hegemonic view, an ideological position regarded as obvious and uncontroversial, and is considered part of common sense.
[Page xvi]While attitudes towards disabled people seem always to be represented as ‘improving’ it is possible, however, to look at things differently. As Barton (2001: 169) observes:
disability also must be defined as a more complex social construct, one which reflects not a benign evolution of acceptance but a dynamic set of representations that are deeply embedded in historical and cultural contexts.
Disability is not a fixed characteristic belonging to individuals, but an oppressive social relationship ‘imposed on top of our impairments’ (Union of the Physically Impaired Against Segregation 1976: 14). Ideology involves the power of ideas to maintain existing structures and social relations (Thompson 2001: 27), and disability is an ideological construct that has been used to strengthen perceptions of the value of conformity. For as long as impairment is understood as a sign of suffering or tragedy, as something ‘wrong’ with people rather than as part of human diversity, it doesn't really matter how much else changes. Disabled people will never be ‘really’ equal, for power relations will continue to mark them as deficient and this will have real, material consequences.
This is where Disability Studies comes in. Grounded in the thinking of the disabled people's movement, Disability Studies offers a critical perspective with which to think differently about the way disability is constructed, created, and related to in everyday life. Still a young academic discipline, Disability Studies is part of a movement for change which looks for new answers to old questions, in insights developed by disabled people themselves. It is not about the study of physical conditions, but about the study of the social relations which exclude people with impairments from full participation as equals in ordinary community life. It is not about bodies as objects for study, but about the way society structures the way bodies are experienced. It is not just about the study of disabled people in society, but about the way difference is used to define the boundaries of what is considered normal.
Disability Studies: A Student's Guide is intended as an introduction to many of the themes and issues explored within the discipline. It is a reference book not just for Disability Studies students, but for students on a range of courses – social work, nursing and other health professions, education, community studies, for example – in which disability is considered as an issue but where perhaps there is not the time to peruse lengthy tomes on the subject. I hope, though, that it will also be regarded as a starting point from which to begin to explore Disability Studies in greater depth. One of the book's distinguishing characteristics is the brevity of its chapters, but it needs to be emphasised that these are tasters. There are questions to encourage discussion and recommendations for further reading at the end of each chapter. Many of these recommendations are for journal articles which, if you are a student, you will be able to access through your university e-library. Chapters have been organised alphabetically, though they do not need to be read in this way. If this is an area completely new to you, you might want to start by reading the chapters on models of disability, particularly the medical and social models, as the distinction between these provides the foundation for most of what is written in the rest of the book.
This book has been written by a lot of people, most of whom are disabled and some of whom aren't, but who all have a background either in Disability Studies or in the disabled people's movement. When inviting people to contribute to the book I felt that to involve academics, activists and students would give it strength. As well as chapters written by people involved in developing Disability Studies theory, teaching and research, there are [Page xvii]others by people daily involved at the cutting edge of disability politics and culture, and two by recent Disability Studies graduates at Northumbria University. This means, among other things, that many of the chapters have been written in different styles. It also means that some points are made more than once, by different people coming from different angles. I don't see this as a problem though.
Isaiah Berlin (2008: 22) distinguished between writers he characterised as ‘hedgehogs’ and ‘foxes’. While foxes are ‘those who pursue many ends, often unrelated and even contradictory’, hedgehogs are those ‘who relate everything to a single central vision, one system more or less coherent or articulate, in terms of which they understand, think and feel’. I think that I would describe most of the contributors to this book, myself included, with only one or two exceptions, as hedgehogs (I hope they don't mind being called that). Our thinking is underpinned by the social model which identifies disability as a social structural issue rather than as a problem to do with some people's bodies. In other words, people with impairments do not ‘have’ disabilities, but are disabled by the physical and social barriers they encounter in everyday life. Given this shared understanding, it was almost inevitable that there should be some repetition of ideas, but in terms of the scope of the book I think that what is revealed by this is consistency., 2013References2001) ‘Textual practices of erasure: representations of disability and the founding of the United Way’, in J.C.Wilson and C.Lewiecki-Wilson (eds), Embodied Rhetorics: Disability in Language and Culture. Carbondale, IL: Southern Illinois University Press, pp. 169–99.(2008) ‘The hedgehog and the fox’, in Russian Thinkers. London: Penguin, pp. 22–81.(Guardian, The (2013) ‘Across the disabling divide’, The Guardian, 12 January 2013.1972) A Life Apart: A Pilot Study of Residential Institutions for the Physically Handicapped and the Young Chronic Sick. London: Tavistock.and (2013) ‘Britain is signing away the right to call itself a liberal democracy’, The Observer, 31 March 2013.(2000) Disability, the Family and Society: Listening to Mothers. Buckingham: Open University Press.(2001) Anti-Discriminatory Practice. Basingstoke: Macmillan.(Union of the Physically Impaired Against Segregation (1976) Fundamental Principles of Disability. London: UPIAS.[Page xviii]