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Unformatted text preview: I E’IBIETIQBBE 12:31 9354581342 HLIMflN SERVICES PflGE @2318 CONTROVERSIAL ISSUES IN - S A DIS-ABLING SOCIETY ‘ John Swain ‘ Sally French . Colin Cameron x}, 069} H Open University Press 33527332333 12:31 3354531342 HUMAN SERVICES Introduction: enabling questions I ' What is this book about? Disability studies is a burgeoning domain of study, as is evident in the growth of courses, research and literature. It has its roots in the growth of the disabled people's movement within Britain and internationally, and the foundation of the social model of disability..Disability studies is centrally the study of the dis- abling society. At its best it is an arena of critical debate addressingcontro- versial issues concerning, not just the meaning of disability, but the nature of society, dominant values, quality of life, and even the tight to live. We begin by considering the rationale by which we deem issues ‘controversial'. The starting point has to be definitions of ‘disability' (and related terms). The dominant view of disability is individual or essentialist, that is as some- thing wrong with the individual. A disabled person is thought of as someone who cannot see, cannot hear, cannot walk, has Down syndrome, has a mental illness and so on. The words ’cannot' and ’has’ are crucial. What is at fault is the individual and what needs changing is the individual. There has, however, been what is sometimes referred to as a "paradigm shift’, at least for some disr abled people. This is a shift in thinking of disability as a condition of‘the indi- ‘ vidual, to understanding disability as a condition of a society in which people with impairments are discriminated against, segregated and denied full para ticipative citizenship. 'It is a shift from ‘disabled' being seen as a personal tragedy, to ’disabled' being a positive identity. And it is a shift from depenr dency and passivity, to the rights of disabled people to control decision- mahingprocesses that shape thEiI lives I As challenges to ways of viewing women came from women themselves (with the feminist movement) and challenges to ways of viewing Black people came from Black people themselves, so challenges to ways of viewing disability have emerged from the disabled people's movement. Disabled people have generated an alternative view: the social model of disability. F'flGE B3313 E’IBHETKQBBE 12:31 9354581342 HUMAN SERVICES PdGE @4318 2 introduction: enabling questions From this viewpoint, society is at fault, that is a disablingsociety that is geared to, built for and by, and controlled by nonvdisabled people we society that excludes disabled people. This exclusion is created and constructed in every aspect of living, including ways of thinking, language, the built environment, power structures, information, values, rules and regulations. Whether you are disabled or not you are living in a disabling society. The roors of contro- versial issues lie in the challenge of individual models by the social model, and there is evidence that, though it is slow, progress is being made. Bames‘and Mercer (2001a: l 1) state: 'Manypeople across the world, including politicians and policy rnakers, no‘wr recognize that "disability" is an equal oppor- tunities/human rights issue on a par with sexism, heterosexism, racism and other iom‘ls of social enclusionf ‘ - At another level the social model is oi itseli challenging. There are contro- versial issues in understanding the social world through the social model. Key concepts are widely deployed and employed in discussions generated by the social model,;principally: barriers, discrimination (and institutional discrimi- nation) and oppression. What is the meaningoi each of these terms and how do they relate to each other? There are, for instance, different models of barriers. The SEAwall model (Swain et al. 1998) presents one way of con« ceiving the institutional barriers that prevent people with impairments achieving access to and participation in organizations. Figure 1 depicts these barriers as the bricks in a wall of institutional discrimination. The wall (rather than more usual concentric circles) graphically illustrates the marginalization of disabled people. In this model of institutional discrimination, attitudinal barriers are constructed on environmental barriers, which are themselves constructed on structural barriers. No graphics can depict the interlinking and interaction among the three levels, though ideology plays a lsey role in the articulation and inter-reliance between each layer. Middleton (1999: 71), however, suggests that this particular model ‘is limited in being two dimen- sional and undynantic, suggesting that any progress is dependent on the whole wall beingdismantled at some point. in time.’ She describes the SEA- ‘wall model as ’revolutionary' and contrasts it with other more 'persuasive’ models of social change. ‘ ‘ ' This takes the debates into a broader arena that can, as ever, be couched in , 'a number of ways. Essentially, to address disability ls to address the nature of the society in which we live as the social, cultural and historical context of ‘ disability. 'We do not live, however, in a society that is solely disablist in ops pressing people. Racism, sexism, classisrh, homephobia and ageism have all generated analyses of the social‘world. How, for instance, does the social model of disability relate to feminist theories? ‘ . To complicate matters further. the social model is not an ossified way of thinking. It is itsclf the subject of debate and development. Two crucial and often explicitly related arenas of debate are over the capacity of the social model to encompass the personal experiences of all people with impairments and to provide a basis for understanding and studying impairments as well as disability. - F'flGE @5318 HLlMflN SERVICES 9354581342 ‘ 12:31 ‘ BB!2?HQEIEIB awn—auflcuflufifih «Em himsfiqfl. Ho mEmeEuE gs nufiwfiuu ‘ him...va HHEESE mfiflugw Eufimmamfi ma Baum-333:“. 435mg fiwfihfim "magma NEE“.qu dmnnmwmuwnfi wfima finm amt..an fizflfififi "mummy: TE #anmifium 3;me Hahn?» Ea EUR «mafia: E Ema, Ha. Hm“: 53mm" FE ‘ HmGonoEm mgnflmmfi . 36 BE daummmqmmuo finanafifi noummwfibfi 32553 “a flammm an H 5.3m wanna Efifiu E HEEchmfivflfi "mflflumflm EH 50:33 353 Hmufiufiflflm . Hash—m Hflfiflafikgfinm .mumuman ummdmnm. mun—Nme Egan wgfimmfi “E . mwuws ~333me dmflanefiu 53%.”ch 3: manna mflaumfiammm "Badman 9:5:an mguafia E’IBIETIQBBE 12:31 9354581342 HUMAN SERVICES PdGE ElEur'lB . 4 Introduction: maria amenities Disability studies is itself the subject of controversy, in terms of its theoreti- cal basis and who controls courses and research and Whether it should be shaped and controlled by disabled academics or grassroots activists or non- disabied academics. There are fundamental challenges to policy, provision and _ . professional practice that are directly relevant to all who work with disabled people, whether in the field of social work, health or educatiOn. Again key ‘ concepts are the focus of controversy. At the time of writing ’inclusion’ has become the catchword in the development of policy, service provision and professional practice and in its vvalte the questions multiply. Howr is inclusion different from integration? How is inclusion in policy realized in professional practice? Who controls the decision-making processes in moves towards inclusion? ‘ . ' . Finally in this brief overview of our conception of controversial ismes in a disabling society, there. are the broadest implications of the social model of dis» ability. While the model may underpin academic study and understanding, the social model of disability is essentially about social change. The debates around Controversial issues have an ultimate political purpose: to challenge and break down the barriers, discrimination and oppression disabled people face. In this sense, the social model of disability is the vision of the liberation and emancipation of disabled people, through developing collective and indin vidual "critical consciousness’ (McLaren and Leonard 1993) and activation. Debate cngcndcted by controversial issues in a disabling society is not tor the sake of debate. It is to change the lives of disabled people, through changing the disabling environment, prejudicial attitudes, and unequal power relations that disable people with impairments and exclude them from full partici- patory citizenship. ' Who is this book for? This book is aimed at a wide readership including disabled people, pro- lessionals and policy makers who are involved with disabled people, whether they themselves are disabled or non-disabled, for example health workers, social workers, teachers and students of these professions. The book will also be of use to academics and students who are teaching or studying disability studies, sociology and 'equallty studies' and non-professionals who are involved with disabled people, for example personal assistants and parents. We also hope there will be a wider audience for the boolt as issues of disability have relevance to us all and a non-disablist society would be better tor everyone. what is in this book? The book aims to generate questioning and to promote debate. it has three parts. In Part One. we reflect on Foundations for the study of disability. These foundations lie in ways of thinking about disability, the language that El3r’2?r'2ElEll3 12:31 3354531342 HUMAN SERVICES Introduction.- enabling questions 5 is used and the struggle for the control of meanings. They include questions about disability studies as a field of study. Disability studies is a relatively new area of academic inquiry which is interdisciplinary and diverse, drawing on psychology, sociology, linguistics, economics, anthropology, politics, history and media studies — but what will it do for disabled people?- Part Two'examines Values and ideologies that impinge on the day-to-day lives of disabled people. it starts with questions of life and death and the highly controversial notion that life can be unworthy of life. Recent develop- ments in genetics. the human genome project, have served to bring these issues to the lore. Thereare questions of diverse identities and experiences. depending on ethnic origin, gender, age and other social divisions. Disabled people also challenge dominant values. What’s so good about independence? Why is disability seen as a tragedy? Who wants charity? Finally there are questions concerning “whose body?’ There is controversy around the use of cosmetic surgery with people with Down syndrome, cochlear implants for deaf children, and the rights of all disabled people to participate in sexual activity. Part Three turns to questions of Policy, provision and practice. Language and developments that can appear just, progressive and even liberating, are " not always what they seem. Changing policy, provision and practice under flags such as meeting special needs, community care and inclusion require close scrutiny in terms of the actual changes in the daily lives of disabled people.'The concept of 'needs’, for instance, has played a key role in the unequal power relationshlpbetween prolessionals and disabled people, needs being defined and assessed by professionals in controlling the provision of services. Have recent changes in social policy. such as y’direct payments“ and a market orientation to health and social care, moved disabled people away from professional control of their lives? Why are disabled people increasingly rejecting the' idea of care and arguing that this has been experienced as oppression and control? How can ’carers’- be part of the solution rather than part of the problem? The politics of‘change are being played out in an increas- ineg broad arena, nationally and internationally. Why have disabled people struggled for civil rights legislation — and why do they continue to do so? Why ‘ are disabled people dissatisfied with the Disability Discrimination Act 19135? How far are Western ideas about disability relevant to disabled people in the majority world and vice versa? ‘ How to use this book Controversial Issues in a Disabling Society is not a reader or a straightforward text- book, but rather a resource book oi material dealing with specific, substantive issues. It is an introductory book, touching on a wide range of issues. It is a collection of relatively short chapters, each setting questions for discussion, outlining the context of a set of key issues and presenting particular argu- ments. The book provides a series of analyses that challenge dominant positions and ideologies from a social model viewpoint of disability. The F'flGE BFr'1l3 E’IBIETIQBBE 12:31 3354581342 HUMAN SERVICES ‘ PflGE @8318 h H introduction: enabling questions is designed to lend itself to teaching methods with a high degree of I student involvement such as seminars, group discussion and debates. Each chapterhas three sections. working from the most general to the moSt ' specific; first, a coverage of general issues: second, an examination of the I issues as they apply specifically to disabled people; and third, a case study. The Case studies are varied and include the experiences and views of individual disabled people, institutions and organizations. A short list of Questions for ‘ discussion is provided at the end of each of the three sections of the chapter and a Debate activity at the end of the chapter. The aim of the questions is to facilitate you in reflecting on the‘toplcs being discussed in the chapter. They are open-ended questions to fuel debate, rather than questions demanding 'right or wrong' answers. There are different types of questions: ' 1‘ Some questions-ask you to examine the issues in terms of your personal experiences and views. it can he argued that issues are controversial only if they involve you in reflecting on deeply held understandings. values and beliefs. ' y . 2 Some questions relate to and can be answered in the context of the dis- cussion in the chapter. These might involve you responding to contrasting views or a particular position that has been presented. We hope that in either case you ,will take a critical stance'to ask your own questions and develop your own arguments. ‘ I 3 Either questions require you to look beyond the discussion within the chap- ter. This‘is an introductory book that we hope Will take you beyond our particular argumentsln the questions, and the debate activities, we hope we are raising issues that will give you a basis for exploring the literature, Within disability studies and, as relevant, social sciences generally, and also gathering evidence, for instance, from disabled people themselves and their organizations, A shortlist of ’further reading” is included with each chapter as a starting point. I We hope that the material in this book will help focus and stimulate work in discussion groups, seminars and tutorials. French et a1. (1994) state: Group discussion is an active, democratic teaching method where each partidpant has the right to contribute ideas, and in Which'the teacher does not dominate. The members of the group pool their knowledge and learn from each other. Discussion is a particularly useful method for exploring complex, multifaceted issues. By considering the interpre- tations and ideas of others, individual learners are provideri With a broader perspective. (French et al. 1994: Brown and Atkins (1938: SO) warn, however, that ‘it is relatively easy to have a vague meandering discussion. It is much more difficult for students to dis- cuss cohereutly, to question and to think.” ' Controversial issues seem to us to have particular use in debates of various kinds. One format we have used follows the steps of Habeshaw et a1. (1983). El3r’2?r'2l2ll2ll3 12:31 3354531342 HUMAN SERVICES Introduction: enabling questions '7 i The group is asked to prepare for a tutorial by reading statements that illus- trate a variety of viewpoints in a controversial area. 2 At the start of the session the participants are divided into as many sub- groups as there are points of view in the controversial area and then each group is asked to prepare a case for its viewpoint. It can be useful to have a proposition for debate. for example: 'we believe that all disabled pupils should be educated in inclusive schools with their non-disabled peers! The division into subgroups can be random, that is partiCipants are allocated to groups irrespective of their personal beliefs about the issues under dis- cussion. This has the advantage of improving participants.r skills in argu- ment and increasing their capacity for understanding the other person’s viewpoint. Arguments are less likely to be rejected if counter-arguments are provided. , . 3 For the debate each subgroup selects a first. and second speaker. The first speaker for each subgroup sets out the argument from their viewpoint. After the first speakers, the second speaker from each subgroup attempts to answer points made from the other viewpoints. The debate is then opened up for-a free discussion. ‘ I . it Finally participants are asked to vote for or against the proposition based on their personal beliefs. ' Overall we hope that this book will be of use to you in furthering the debates in the struggle for the liberation and emancipation of all disabled people. changing ways of thinking, breaking down disabling barriers and creating a more inclusive society. I F'flGE @3313 33527332333 12:31 3354531342 HLlMtl'tN SERVICES QB What’s ina name? Mind your language Within a social world the way that we understand the objects and relation- ships around us are framed within the language that we use. Names are given to objects, groups and categories of phenomena in order to distinguish them from others. This makes it possible for us to understand and control them better and to communicate about them with each other. We begin, then. by examining this process of labelling people and then address the issues in relation to disabled people. The. chapter ends with a case study, from research, of labels applied to ‘people with learning difficulties’. The naming and classifying of objects is an activity that has gone on since human beings first evolved; For instance, according to the Bible, God brought ‘every beast of the field and fond of the air to Adam to see what: he would call .them' (Genesis 2': 19). This naming process signalled the dominion of human beings ‘o‘ver everything that moves upon the earth (Genesis l: 28). When parents choose a name for a newborn child they are placing an identity upon that child. Frequently infants will be given names that come from parents or ‘ grandparents in order to establish continuity in lines of genealogy. his usual for wives to give ,up their maiden names and to adopt the surnames of their husbands and for children to be given the surnames of their fathers rather than their mothers. This reflects the way in which power is structured within a patriarchal society. As badges of identity the names we are given, or the names we give ourselves, have a powerful influence in shaping out under- ' standing of who we are, where we have come from and Where we bEIong. Designations like “man/woman, ‘blacls/white’, 'olclfyoung’. "Catholic/Protes- tant’, ‘gay,’ straight‘, ‘wotking class/middle class' are labels by which we come to identify ourselves. They (“an evoke feelings of superiority or inferiority or be marks of inclusion or exclusion, humiliation or pride. Fundamentally they are, reflections of the way in which society is organized and the positions we F'flGE 18313 13332733213138 12:31 931545131342 HLlMi’liN SERVICES PflGE 113113 12 Foundations hold within it. Burr (1997: 7) suggests that language is “more than simply a . way at expressing ourselves. When people talk to each other the world gets construcred. Our use of language can therefore be thought of as a form of social action-’ I Labelling is the process whereby de...
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