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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 descriptions are attached to individuals or groups which. in turn, guides the attitudes and behaviour of others towards them. Labelling theory was first applied to criminal behaviour. where it was noted that the application of labels such as fcriminal‘ and ‘addict’ tended to increase the deviant behaviour. One of the reasons for this is that we tend to live up to other people’s expectations of us. Labelling somebody negatively may also lead to increased surveillance or Segregation from the wider com- munity which further increases (and even creates) the predicted behaviour (Fulcher and Scott 1999). These processes, whereby people tend to live up to the expectations of others, have been termed the self-fulfilling prophecy (Gross 1987). y. A major iactor in the labelling process is that labels are usually bestowed by those who have power and authority ('experts’) upon those who do not. Fiske (1993) referred to this as 'imperialising' power. Power of this type was present , in the British colonies where a minority of influential British people con trolled indigenous populations by means of force, coercion and western ideologies which were geared towards maintaining control (Potter 2000). Professionals including doctors, social workers, psychologists and teachers are endorsed with institutional authority to make judgements and impose labels on people. By virtue of the recognized kn0wledge and qualifications they have gained through education, they are judged to have demonstrated their fitness to make valid pronouncements on the ‘cases’ with whom they deal. The education that they have received, however, has not taken place in a sonal vacuum but reflects existing relationships of power within society. Professionals are granted social power only as long as they conform with the codes of practice and values of their professions. The judgements that they make and the labels they impose reflect particular cultural nouns. By defin- ing what is considered aberrant the boundaries of what is deemed acCeptablE (or normal) are marked out (Thomson 1997). Labelling is not, however, the exclusive domain of the powerful. People may label themselves (‘l’m a cockney’) and label each other (“he’s a Geordie‘). Such labels may be positive or negative, enduring or transient. in the 19505 gangs of rebellious young men, who dressed and behaved in a cer- tain way. labelled themselves “Teddy boys’, and in the 19605 two rival groups, the “mods” and the ’roclters’, noted four their motorbikes and physical combat in seaside towns, emerged to enrage the ’respectable’ majority. People may be labelled by the school they attended (‘he's an old Etonian’), by their sexual orientation {‘l‘rn a dyke'), or by their country or origin (’she's a Yank“). . . ‘ In themselves names are not necessarily good or bad. They can be used either positively or negatively, to affirm a person’s identity or to oppress, coerce, control and exclude (Saraga 1998). Naming can, on the one hand, he E’IBIETIQBBE 12:31 9354581342 HUMAN SERVICES PflGE 12318 What’s in it Home? 13 an exercise of power and part of a process of control but, 011 the Other hand, he an expression of personal or group identity and part of a process of liberation. ‘ Questions for discussion 1 Some labels can be seen as more stigmatizing than others. Thinlc about yourself in terms of labels applied to you. What labels do you 'accept as positive and aspire to? What labels dolyou find offensive . and demeaning? Why? ‘ y 2 What positive and negative labels do you give to yourself? How far do these tally with labels given to you by others? ‘ 3 Is it possible to resist the labels we are given by others. for example by teachers and parents and'acquirc new ones? How can we achieve this? - Disabling and enabling labels - The words used to describe disabled people are almost invariably negative or passive. They may; for example, be labelled‘by theirimpairment (‘he's a para- p1egic',"she’s an amputee”) as if that were their most important attribute. Many words in common use, for example “shornsighted', meaning laclc of insight, show how deeply rooted negative perceptions of disability are in our culture. The very words ‘idisabled’ (not able) and ’invalid' {not valid) indicate the lowly status that disabiedpeople have within society. Stone (1999a) found similar conceptions of disabled people in her studies of ancient , Chinese script. ‘ Descriptions of disabled people. frequently have tragic overtones, 5 for example ’sufferers’ and ‘Victims’, and they are often spoken of as an homo-- geneous group, for example ’the disabled' and i'the blind‘, which is reflected in the titles of many leading charities. Disabled people are also referred to as - ’patients’ and ‘clients’i and are thought to have ’needs’ rather than ’rights'. As French and Sim (1993: 31) state, ‘Basic human rights are often regarded as disabled people's needs, for example the “need” for an accessible toilet.’ Some labels applied to disabled people, such as ’brave' and ‘extraordinary’ appear, on the surface, to be positive but are regarded by disabled people as negative. This is because such descriptions give a distorted image with which few disabled people can identify. French .(1989: 30) states that such words ‘either gives rise to the notion that disabled people are superhuman, or that anything they achieve — however minor » is worthy of congratulation and admiration.’ I The euphemism “physically challenged’ gives rise to images oi disabled people keenly and happily struggling against adversity within a disabling society, while being admired for doing so. It reinforces the notion that society E’IBIETIQBBE 12:31 9354581342 HUMAN SERVICES PflGE 13318 14 Foundations is fixed and that disabled people must ‘overcome’ what are viewed as ‘their’ problems if they are ever to become valid members of it. An issue which gives rise to considerable discussion is whether the term 'disabled people“ or 'people with disabilities’ should be used. “People with disabilities’ is said to humanize disabled people by putting the person before the disability. It implies that we have only to change our attitudes in order to change the realities around us. Oliver and Barnes (1998). however. draw attention to a number of important negative implications arising from the tendency to place the word ’people’ before ‘disability'. They point-out that it blurs the distinction between impairment and disability implying that disabil- ity is the property of disabled people and not Society. It sidesteps the need for social and environmental change and explicitly denies the political nature of ‘ disability. Placing the word ‘disabled' before the word ‘people', on the other hand. is a political statement arising'from theunderStanding that disability is 'done" to people rather than being something that they ‘have‘. The same tendency to obscure the political meaning of disability can be found in the use of euphemisms aimed, ostensibly, at drawing attention away ‘ from people ’5 impairments. In her discussion of the term ‘differently abled’ for ‘ instance, Wendell (1997) states: ‘ I assume the point of using this tertn is to suggest that there is nothing wrong with being the way we are, just different. Yet to call someone ’differently abled’ is much like calling her ‘differently coloured” or ‘difier- ently gendered’. . . If anything, it increases the ‘otherness’ of disabled people, because it reinforces the paradigm of young,‘ strong and healthy, with all body parts working perfectly. ' (Wendell 1997‘! 271—2) Many people labelled as being learningdisabled prefer the term “people with learning difficulties“. Brechin (1999) explains that this puts the person before the ‘prohlem’ which, given their history of extreme segregation, abuse and neglect, may be particularly important. It is also a less all-embracing term than 'rnentally handicapped’ which preceded it and suggests that people are capa- ‘ ble of learning if given the opportunity to do so. Brechin does, however, find the term problematic for the same reasons put forward by Oliver and Barnes (1998) in their discussion of disabled people generally. She states that, “If the whole problem by definition lies with the individual, then our understandings and our interventions start and stop with the individual' (Brechin 1999: 53, emphasis in original)“ There is, however, considerable controversy about this issue by the recipie cuts or such labels. Aspis, who describes herself as ’a disabled person who has been labelled by the system as having learning difficulties' (1999: 174), says that the name and the identity ‘learning difficulties’ ‘have been imposed upon me by the system, in particular the education system, which prefidefines learning ability’ (Aspis 1999; 174). Other people labelled as haying learning difficulties reject the process of labelling altogether as the folloWing q'uor rations illustrate: E’IBIETIQBBE 12:31 9354581342 HUMAN SERVICES PflGE 14318 What’s in a name? 15 Nobody has got learning difficulties-everyone is clever. (French-and Swain 1999: 328) I’m thinking that disabled is not the right word. I’m thinking that You're still a human being that . . . we are put here on this world to be loved and be cared for, not to be called names . . . labelling-shouldhe banned eom~ pletely, right off, and scrub it right in the bin; the scrap heap.‘ ‘ (Palmer et all 199.9? 36) One of the slogans of People First, an organizationof people labelled as having learning difficulties, is Label Jars not People. It is worth mentioning herethat many people labelled in this way were deemed ineducableand were given no formal education until a change in the law in 1970. This clearly illustrates how words are translated into policy and practice. ‘ I I H Since the introduction of the term ‘special eduCational needs' in the Warnocls Report (1978), the label ‘special needs has gained common cur- rency and has become recognized as a legitimate personal description, for example ‘Jirnrny has special needs’ or “I’m a special needs teacher’. This may, in turn, lead disabled children to identify and measure themselves as “other than' or ‘less their supposedly ‘t’ioi‘méEIl’ children (Middleton 1999). The term ‘special educational needs’, and the practices that emanate from it. have been criticized for stigmatizing children, for produdng a negative, homogenous category, and for being uncritical of educational practice and maintaining the status quo (Armstrong et al. 2000), This sense of stigmatieation and difference is clearly evident in the following quotation from a teenage boy with a visual impairment who is talking about, his special schooll ‘l‘m not worried about telling them Where it is, we Worried about telling then-l what it is. I tell thern it’s a private school” (Swain and'French 1998: 98). ' ‘ As the names used to identify people with impairments reflect dominant discourses of tragedy and inferiority, it is not surprising that many disabled ‘ people are unwilling to identify themselves as disabled. A disabled person quoted by Shakespeare et a1. (1996: 51), for example, states, ‘I was in denial about being disabled most of the time, and ill saw anyone who was disabled I didn’t want to talk to them, and if I did talk to them, it Was as if T was able- bodied. . . doing the old patronising bit.’ ‘ p p I I . However, although the discourse is usually about the labelling of disabled people by others, disablcd‘people have also labelled themselves and in so doing have turned negative labels into proud labels People in the Deaf com- . munity write 'deaf’ W'ltl'i a-capltal ‘D' as a symbolof sell-respect, strength and solidarity, and labels such as 'crip' are used by disabled people in a similar way; Marta Russell, the author of Beyond Ramps (Russell 1998),'for example. ‘ describes herself as an ‘uppity crip’. Labelling by disabled people themselves celebrates difference and fosters a collective identity. This is What Eiske (l993) terms ’localisirig power', thatis the bottom-up power of subordinated groups. E’IBIETIQBBE 12:31 9354581342 HUMAN SERVICES PflGE 15318 15 Foundation: Questions for discussion 1 What are the implications of labelling for disabled people in terms of personal and political control over identity and quality of life? What labels might disabled people accept as positive and aspire to? Why? 2 How successful have disabled people been in naming themselves? Has this had an),r implications for policy and practice? 3 ' Do disabled people need labels? ‘ Questioning labels This case study is based on research conducted at the University of Northurn- bria (Swain et a1. 1999; Gillman et a1. 2000}, Two projects explored the pro cesSes and meaning of labelling, particularhr labels of “learning difficulties“, ‘challenging behaviour' and ’autism'. Semi-srrucruted interviews and focus groups were conducted with people with learning difficulties, family carers, care workers and professionals, including social workers, general prac- titioners, psychiatrists and nurses. The resaarch‘addreSsed the processes by ' which people are labelled and the implications of labels in determining inter- ventions. Here we shall concentrate on the views and experiences of care workers and family carers. Challenging behaviour is one of the most problematic labels in tCl'lTlS of definitions and criteria for labelling, the procesSes by which people are labelled and the consequences of being labelled. The most common behav- iours thought to be challenging in this research involved some form of violence or aggression towards staff or other service users. However, a wide range of behaviours was deemed to be challenging including sexual assault: He put his hand upon my breast, and said, ‘l’m sick of this place“ I took hold of his hand, removed it and said, "Leave it”, or something like that. And because I had removed his hand, he sort of nippedus quite badly on the arm. Dne- lnteresting point about this statement is that such seitual abuse is referred to as challenging. If this had been an example of abuse perpetrated by, rather than upon, staff, it would not have been regarded as challenging behaviour. The next example underlines this point. Here expressions of dislflte‘ior a day centre are seen as challenging: We had experience here of a bebafiour which was quite challenging, that the person concerned would come in, she is from a different cultural background, so that had a bearing on it, But she would come in, and would wail and scream, and would be totally inconsolable She wouldn't even attempt to propel her wheelchair, even though, to all intents and purposes she appeared to be capable of doing so, but would really drown out any attempt that you had to talk to her, El3t'2?t'255l3 12:31 3354551342 HUMAN SERVICES What's in a name? 17 As in the previous example, similar defiance by staff would not be deemed Challenging as such, however unacceptable it was thought to he, Another question arising from this quotation is whether overcompliance would be seen to be as challenging as behaviours that might‘be said to‘resist the status quo such as silent acceptance of verbal abuse from other clients or staff.“ The consequences of behaviour were also referred to in defining what is challenging, particularly dangers to the person themselves or others: I thinle it is not taken seriously unless there’s physical contact, someone actually is violent towards you. or furniture, whateverr The everyday somebody Screaming all day, you’d say that is challenging, but it’s not taken really seriously unless people are‘hurt. Something that puts them - or others in danger basically seems to be the main criteria. Perhaps inevitably, one factor in whether behaviour is seen as challenging or not is whether it is manageable, and this depends on a variety of consider- ations, including predictability: - The two people I’ve got, one of them, there’s triggerpoints. you can actually see the signs of him building up. And you know that there’s . going to be an outburst, for want of a better expression, you ltnow, well, towards you. The other person shows no signs at all. There's no trigger ' points, nothing, and she can just become very, very violent towards you for no reason at all. ' - Though the care workers found it easy to identify examples of challenging behaviour and people whose behaviour was seen as challenging, they also talked of the difficulties of defining what is challenging, suggesting, for instance, that such judgements are relative to individual values: It depends how people see it as a, you lsnow, what I might see as a 'chal- lenging behaviour you mightn't. It seemed, too, that the label of challenging was not just dependent on who was making the judgement but who was being judged. Some behaviours could be acceptable from one person but not another. " The research suggested that labels can be seen in a more positive light. Some participants sought diagnosis and labelling in the belief that they would ‘ he followed by treatment, intervention or social suppot'r'that would lead to a better quality of life for the individual and possibly the family. Expert know- ledge is not necessarily the exclusive territory of professionals. Family carers make it their business to access what they consider to be appropriate medical ' knowledge, which is then incorporated into their explanations about their relatives” symptoms and behaviour. A family carer told us how she had been convinced for many years that her son was ‘autistic’, a diagnosis that was finally given when her son was in his twenties: ‘ When Malcolm was growing up, we read articles about autism, and I approached the school. I was told, “too are always looking for answsrs, accept that Malcolm has learning difficulties and then you will overcome till of your problems! ' ‘ PIfiIGE 15315 E’IBIETIQBBE 12:31 9354581342 HUMtfitN SERVICES PflGE lIFr'llE ‘ 15, foundations . - I 5 labelcanprovide anestplanation that can be useful to family carers in their I ‘ adagififig's‘with the generalpublic and, indeed, professionals. Misunderstand- of indiiiidual's’ behaviour can lead to disapproval and assumptions about j melypfisgnj With-,leamhm difficulties and his or her family. two participants ‘ .. cemented; I . l I With the antistic kid we fostered, I used to want a sheet of paper to hand around to pggp]: to explain what was going on . . . he looked like a naughty boy who had control over me. This is what it looked like and it's how the public picked it up as well. The need for a fonnal label also was seen as important by those carers whose son’s or daughter’s learning difficulty was not intraediately visible: I used to wish that he was in a wheelchair or that he had Down’s Syn“ drome. so people could see he was different from other children. Nevertheless labelling people is a powerful business and misses numerous thorny questions. What are the consequences for the labelled person? Is it a basis for a better understanding or does it invoke stereotyping and discrimi- natory assumptions about a person's worth which can be used to justify the exclusion of an individual from. treatment such as organ transplantation and * dialysis. A participant commented: If you. and I as adults began to develop a continence problem, we would be sent for screening and possible treatment. If you've got teaming diffi- culties and you have developed this in adulthood, it is accepted to be just . part of learning difficulties. The label challenging behaviour can precipitate management procedures. A key worker from a day centre,for instance, described the behavioural pro- gramme that had been designed by a clinical psychologist to enable staff to deal with challenging behaviour. ‘ The research suggested, however. that the consequences of labelling can be . highly detrimental: A keyworker from a day centre, for instance. described the behavioural programme that had been designed by a clinical psychologist to enable staff to deal with challenging behaviour: Once we start having outbursts from her. she’dlbe directed to the time out chair. She can use the time-out for up to fifteen minutes . . . If she is calm for up to two minutes, she can leave the chair. If after fifteen min- utes she is still being aggressive then we have to bring her into the time- out room, and she is allowed to stay in there for five minutes . . _ WE hold the door handle just to stop her getting out. After five minutes we can actually lock the door, and that's classed as seclusion . . . When she has these outbursts she's given medication.‘ (Gillman et al. 1997: 636) In this instance the. purpose of labelling is to instigate control of the person being labelled. ' ‘ 88327332888 12:81 8884881842 HUMAN SERVICES PflGE 18318 What’s in it name? 19 Questions for discussion 1 Are you ever thought to have challenging behaviour? It so. what are these behaviours and what effect do they have on you and other people? 2 Are there any circumstances under which being labelled as a person with challenging behaviour might have positive consequences? 3- The term 'challenging’ has certain connotations when applied to the ‘ behaviour of people with learning difficulties, all of which are nega- tive and problem related. Why is this? 1 Debate activity Debate the proposition: Labelling disabled people is always harmful The following quotations may provide you with a starting point: i' I'm done with names Names are nothing but collars men tie around your neck to drag you where they like ‘ {Gray 2001: ‘72) Discovering that your child has a specific need or disability is prob- ably one of the most devastating experiences that a parent will live through . . . we have information on over 1000 rate syndromes and rare disorders and can put families in touch witheach other i . . our definition of children with disabilities includes children who are born with specific and rare disorders, children'th develop acute and long~tenn health conditions and children who have spe» cial educational needs. ‘ (Contact a Family 2001“) Further reading Brechin, A. (1999) Understandings of learning disability, in J. Swain and 8. French (eds) Therapy and Learning Dtfi‘iculties: Advocacy, 'Partt'cz'nation and Partnership. Oxford; Butterwordi-Heinemann. ‘ ‘ Corker, M. and French. 5. (eds) (1999)"Dt'mbt'lin; Discourse. Buckingham: Open Uni- . versity Press, Fulcher, J. and Scott, J. (1999) Sociology. Oxford: Oxford University Press, Saraga, :E.'(ed.) (1998) Embodyiitg the Social: Constructions osz'fi'rEfice. London: Eoutledgel ...
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This note was uploaded on 04/14/2008 for the course RHB 493 taught by Professor Larson during the Spring '08 term at SFASU.

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