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Unformatted text preview: lflb’l‘di'rle’lfilfitl 13:13 ‘:|';lb4l:itll';l4'.«_’ HLIMi'l'uN til-.H'Uililz‘d Hills“: £12512 I Celebrating difference“? Being different This chapter explores the impact on people’s lives of being labelled 'different’. Being different can incur admiration and praise but more often it leads to prejudice, discrimination and oppression. Oppressed people are, however, increasingly affirming their identity and insisting that their difference is a cause for celebration. The first section of this chapter explores the impact of being negatively labelled on various groups within society and how they have affirmed and celebrated their identity; women who choose to be childless will be the main example. The second section examines the issue of ‘difference’ in the lives of disabled people and the development of the affirmative model of disability. The third section of the chapter focuses on the disability arts move- ment where alternative understandings of both disability and impairment have been promoted. ‘ Many people are perceived to be tragic, dangerous, inferior or less than human because they do not conform to societal norms. These norms change with social, economic and political circumstances so our perceptions of others vary over time and across cultures. Gay men in Britain, for example, were until the 1967 Sex Offenders Act regarded as criminal and cast into jail for their sexual activities. Later they were given an illness label and 'treated’ by psychiatrists who attempted to 'cure' them. More recently a fragile acceptance of their lifestyle has emerged although enormous prejudice still exists which is reflected in legislation and social policy. It is. for example. still very difficult for gay couples to adopt a child and gay partnerships are not given the same legal or social status as heterosexual marriage. In recent years lesbians and gay men have ’conte out’, have rejected the labels imposed on them and have celebrated their difference by establishing organizations such as Gay Pride. They have asserted a positive identity which UEi’l‘di’L’lfilfiH 13:13 H'eib4btil'ei42 HLIMtl'tN til-.H'U'iiilz‘d I-‘ti'tisil: £13512 (56. Values and ideologies has counteracted the negative identity imposed on them by Others and wh they may, in part, have internalized themselves. Another group who are stigmatized in most societies are women w choose not to have children, though in many developing countries no chop; exists (Foreman 1999a). Such women are often regarded as selfish-hemp tic, feclcless, child-hating and unfulfilled (Bartlett 1994; Safer 1996: MCAll" ter with Clarke 1993). Many of the women whom Bartlett interviewed spok“ of negative attitudes, pressure to become parents from family and friends " an erosion of selflesleern. One woman said, ’Often in a social situation I f the odd-one out . . . you’re a woman. you don't marry, and you don’t hav- children as well. That means I'm a non-person' (Bartlett 1994: 25). Simila l a woman interviewed by Safer (1996: 46), referring to family gatherings, s‘a 'I'm the only one there without a child so they think of me as less t evolved. There’s a certain hush when people say, “she doesn’t have children — they always bring up a person they know who had a child in her late forties People tall; as it you had a fatal disease.’ childless women are, however, beginning to speak out about the way the: view motherhood. Safer {1996) openly admits that; in some essential ways I seemed temperamentally unsuited for the job As heretical as it was to admit it. I realised that having a child of my own ‘ would force me to spend a great deal of time doing things I disliked . . . I I: tecoiled at the chaos and limitations a baby would bring. (Safer1996:20)1"‘ i Such is the stigma attached to women who choose to be childless that in 197‘ the British Organization of Non-Parents (BUN) was founded. The organist ation asserts that non-parents are ‘difierent hut equal' and states that: EON has been founded on the premise that the cultural and media bias - against those Without children must be redressed, and the organization seeks to stress that a life without children can be perfectly rewarding and ‘ fulfilling for those who choose it . . . The media and especially advertis- ing constantly push the message that having children is fun, natural and necessary. There is a strong unplication that if you do not conform there is something 'WRONG with you . . . BUN gives you the opportunity to know that you are not unique or freakish" and a chance to hear from or speak to others who feel the same. ‘ (EON undated pamphlet} EON has provided support and solidarity to many elective nonuparents and l has helped them to resist pressure, to feel valued and to assert and maintain a positive self-identity. The choices open to women have greatly increased in western society since - the earlyr 1950s. This has resulted from the development oi contraception and ' greater gender equality, for example in education, employment and the law. These changes have reduced the dependence of women on men and have OPEflEd up lifestyles which were previously unobtainahle and where marriage and family are no longer central. The spearhead for most of these changes has UEHlHHEUUH‘ 13:1b 33b4b31342 HUMflN HtHUlUtH Celebrating dtfirerence? 6? 1.3611 the women’s movement which has a long history predating the mid— ymeteenth century when women campaigned lot the vote. More recent eminlst analyses view motherhood as an oppressive institution that is domi~ latgld'hy men. Lawler (1996) states that ungaging in maternal work, which is only one, temporary aspect oi a woman’s life, has come to be defined as the whole oi her identity . . . Nurturance, patience and the rest are not valued (or paid) because it is , considered ’only natural” that women should care selflessly and un- conditionally not only for children but for adult men also . . . Even if women do not become mothers they cannot escape the oppressiveness of I the institution of motherhood . . . If women do not bear children then their childlessness is what defines them. ' (Lawier 1996: 154—5) it has to be said, however, that the pressure to have children applies only to :ome women. Single women, lesbians and disabled women, for example, are )iteri regarded as unfit to he mothers and can find themselves subjected to iisapprovai when they want to have children. There are many other groups within society who are devalued including old scople. people from ethnic minorities and those who are labelled mentally ill. almost Without exception the response to oppression is sell-organization as a means of fighting back. The Black Civil Rights Movement, Mad Pride and the Association of Retired and Persons over 50 are all examples of organizations :hat challenge oppression at both a personal and political level, Questions for discussion 1 Have you ever been labelled negatively? How, if at all, did you reduce the impact of it? ‘ 2 How may group identity change the feelings and behaviour of people who are negatively labelled? 3 How may social, economic, cultural and political changes impact (for , better or worse) on people who are negatively labelled? celebrating disability and impairment Throughout history and in most cultures disabled people have been viewed as inferior, dangerous, tragic, pathetic and not quite human. They have been kept apart from other people by the practice of institutionalization and by hostile attitudes and an inaccessible environment (Hughes 1993), Such are the negative presumptions held about impairment and disability, that the abortion or impaired foetuses is barely challenged (Parens and Melt 2000) and compulsory sterilization of people with learning difficulties has been widely practised in many parts of the world (Park and Radiord 1999). Pflfit UdflE UEr'l'jrrElfilfitl 13:12:: Ellib4lntlllj42 ‘ HLIMtfltN til-.H'U'lUt‘d I-‘fltlsil: Him-’12 o8 Values and ideologies The erroneous idea that disabled people cannot contribute to society, 0; enjoy an adequate quality of life, lies at the heart of this response. The prob, ferns that disabled people experience are seen to result from impairmen: rather than the failure of society to meet that person's needs in terms 0; appropriate human help and accessibility, Furthermore people who sequin an impairment. are assumed to suffer feelings of loss from Which there will be no gain and from which they will never completely recover. Matty disablet‘ people have internalized these ideas resulting in a negative sell-image for, a: Linton (1998b: 152) points out. ‘Disabled people and nondisabled people have both been Schooled in the same ableist discourse.’ Similarly Morris (1991} states: Most of the people we have dealings with, including our most intimate relationships. are not like us. It is therefore very difficult for us to recog- nise and challenge the values and judgements that are applied to us and our lives. Our ideas about disability and about ourselves are generally formed by those who are not disabled. (Morris 1991: 37} Disabled people Who view their impairments as positive or neutral have found it difficult or impossible to convince nonvclisahled people that this is the case (Linton l993a). Talking of Helen Keller, Crow (2000: 854) states that 'It seemed that she could never fully satisfy people’s curiosity for details nor could she reassure them entirely that she was content herself. When the noon disabled world feted her courage, for Helen, her impairments Were a natural, largely neutral condition.' Similarly Kent (2000) writes: I will always believe that blindness is a neutral trait, neither to be prized nor shunned. Very few people including those dearest to me share that conviction I feel that l have failed them when I run into jarring reminders that I have not changed their perspective. In those crushing moments I fear that i am not really aCcepted after all. (Kent 2000: a2) In recent years disabled people have formed a vibrant international move- ment which has challenged the disabling physical and social environment in which they are compelled to live. A central aim of the disabled people move- ment has been to change the definition of disability from one of helplessness and tragedy, brought about by impairment, to one of civil rights and equality where disabling barriers are believed to be the cause of disability The affirmative model of disability (Swain and French 2000) extends the social model by focusing on the benefits and positive aspects of being disabled and having an impairment. This is a direct challenge to the tragedy model and is lilter to be interpreted as an expression of bravery or simply ignored “the writings and experiences of disabled people demonstrate, however, that, far from being tragic, being disabled can have benefits. if, for example, a person has sufficient resources, giving up paid employment and pursuing interests anti hobbies, following an accident, may enhance that person’s life. Similarly, UEKlHKEUUH 13:13 Hdb4bflld42 HUMQN HtHUiUtH Celebrating difirrener? 69 disabled peeple sometimes find that they can escape class oppression. abuse uur‘neglfict by virtue of being disabled. Martha, a Malaysian woman with a .' fisual impairment whom we interviewed. was separated from a poor and ‘ .‘hBEIectful family and sent to a special school at the age of 5. She said: '; .1 I got a better education that any of them [siblings] and much better health care too. We had regular inoculations and regular medical and l ‘ dental checks. ‘ She subsequently went to university and qualified as a teacher which none of as; brothers or sisters achieved. Similarly, the deaf children on Martha’s Vine- .Iyard (an island off the east coast of the USA which had a high incidenoe of inherited deafness) were the only ones to receive an education (Grace 1985). Many children who were sent to “open air’ schools. because of conditions such as asthma and tuberculosis. escaped appalling poverty. Peter Holmes recalled: My first impression at the age of seven or eight was its vastness. Previ- ously all I had ever seen was factories. terraced houses and bomb-sites. To a child like myself it was magnificent. The countryside and woods were overwhelming and very beautiful and the air so sweet . . . We ' would wall; through the woods and visit farms seeing animals and flow- ers and trees that most of us had only ever seen in books . . . The food was very good. We also had indoor toilets and bathrooms, something we did not have at home. and real toilet paper w not newspaper. (quoted in Wilmot and Soul 1998: 257) A further way in which disability and impairnier'it may be perceived as beneficial to some disabled people is that society’s expectations and require- ments are more difficult to satisfy and may. therefore, be legitimately avoided. A disabled man quoted by Shakespeare et a1. (1996: at) said, “I am never going to be able to conform to society’s requirements and i am thrilled because I am blissfully released from all that crap. That's the liberation of dis- figurement.’ Young people (particularly women) are frequently under pressure to form heterosexual relationships, to marry and have children. These expectations are not applied so readily to disabled people who may. indeed, be viewed as asexual. Although this has the potential to cause a great deal of aroriety and pain, some disabled people can see its advantages. As Vasey (1992b: 74) says. ’We are not usually snapped up in the ilOWer of youth for our domestic and child rearing skills, or for our decorative value, so we do not have to spend years disentangling ourselves from wearisome relationships as is the ease with many non-disabled women.’ Although it is more difficult for disabled people to form sexual relation- ships. because of disabling environmental and social barriers. when they do any limitations imposed by impairment may, paradoxically. lead to advan- tages. Shakespeare et a1. (1996: 106). who interviewed disabled people about their sexuality and sexual relationships remark that, ’Because disabled people Ffifit Ubil! UEi’lHKEUUH 13:13 ‘:|';lb4btll';l42 HLIMtl'uN ‘.:i|-_H"t-"J.l_ll-_‘:i l-‘ti'ulsil: Id #12 70 Values and ideologies are not able to make love in a straight forward manner, or in a crimenrla position, they were impelled to experiment and enjoyed a more interest " sexual life as a result.’ ‘ For some people who become disabled their lives change complete; though not necessarily for the Worse. A woman quoted by Mi'JI'IlS ( SIETESI H (‘6' As a result of becoming paralysed life has changed completely. Before in accident it seemed as if I was set to spend the rest of my life as a religiofi sister, but I was not solemnly professed so was not accepted back into it; order. Instead I am now very happily married with a home of my own; (Morris 1939: 120' Bennett (2001), a disabled doctor, states: I was horrified by What I imagined to be the experience of disable people, which I encountered in my practice. Now 15 years after becom , lug disabled. I find myself completely at home with the concept, of eiiec-. tlvely being me! . . . Now I know that my assessment of the potential, quality of life of severely disabled people was clearly flawed, . (Basnett 2001: 453) . It; As for non-disabled people, the quality of life of disabled people depends my whether they can achieve a lifestyle of their choice. This, in turn, depends eat their personal resources, the resources within society and their own unique;fo situation. Morris (1993a) believes that the assumption that disabled peoplefi want to be other than who they are is one oi the most oppressive experienced? to which they are subjected. ' The writings of disablecl people demonstrate that being born with impairment or becoming disabled later in life can give a perspective on ‘ which is both interesting and affirmative and can be used positively. This illustrated in the following quotations: I A few years later, at my special school, I remember one of the care stat-I. loudly telling me that I should never give up hope because one day- Lg. doctors would find a cure for my affliction, and I loudly told her that I didn‘t want to be ’cured'. I remember this incident because of the utter : disbelief this statement caused among all the non-disabled people present, 1 1 and the delight this statement caused amongst all my disabled friends. g; (Mason 2000: 8) p I cannot wish that I had never contracted ME, because it has made me a different person, a person I am glad to he. would not want to miss being and could not relinquish even if I were cured. (Wendell 1996: 83) I do not Wish for a cure for Asperger’s Syndrome. What I Wish for is a curt: ‘ ‘ for the common ill that pervades tho many lives, the ill that malces people compare themselves to a normal that is measured in terms of perfect and absolute standards, most of which are impossible for anyone to reach. ‘ (T—Tolliday Willey 19-99: as) lflb’l‘jf'zlfilfitl 13:13 Hdb4btlltl42 HLIMtl'iN til-.H'U'iiilzti l-‘ti'iisila lath-’12 Celebrating dtfiereece? 71 Some peggple who acquire an impairment do experience feelings of loss although this is by no means inevitable. John Hull (1991, 1997iv tor example, Writes that he grieved for four and a half years over his loss of sight. l-lis griev- ing pmcess did. however, subside and being disabled has led him to write «mfmmative and penetrating books about the experience of blindness. Nobody can ateurately predict the amount of tragedy or happiness a person my experience in life — there are thousands of interacting variables and, in addition, there are numerous ways of viewing any situation ~ and yet people feel confident to make such predictions about disabled people without aslting them or conceiving of a society where disabled people are accepted and included. The inherent assumption is that disabled people want to be other than as they are, even though this would mean a rejection of identity and self. For many disabled people the tragedy view of disability is in itself disabling. It denies their experiences of a disabling society. their enjoyment of life, and even their identity and self-awareness as disabled people. Questions for discussion 1 Why is the tragedy model of disability so prevalent? 2 Why have disabled people rejected the tragedy model of disability? 3 What are the major ideas underpinning the affirmative model oi dis- ability and how, if at all, does it add to the social model of disability? From tragedy to pride: disability arts Disability arts is a relatively recent, though well-established, branch of the dis- abled people's movement. A wide variety of activities are encompassed Within disability arts including theatre, dance, poetry, photographyr cornedys music and visual art. Although disability arts is concerned with gaining access for disabled people to mainstream artistic facilities and opportunities. its main function is to communicate the distinctive history, skills, customs, experiences and concerns of disabled people, which many believe constitute a distinctive lifestyle and culture (Vasey 1992b). Disability arts gives disabled individuals the opportunity to express their views and experiences of impairment and dis- ability which often run counter to mainstream stereotypes. A central feature of disability arts is, however, collective experience. Disabled people are increasingly coming together to help each other express themselves in art and to share information and ideas. Barnes et a1. (1999) define disability arts as: the development of shared cultural meanings and the collective expression of the experience of disability and struggle. It entails using art to expose the discrimination and prejudice disabled people face and to generate group consciousness and solidarity. Disability cabarets can empower people in much the same way as going on a direct action demonstration. {Barnes ct a1. 1999: 205—6) UEi’lHHEUUH 13:12:: Ellib4btillj42 HLIMtfliN til-.H'u'liilz‘j l-‘tfliisil: UHHlE 72 Values and ideologies Disability arts is a political as well as an artistic endeavour. It involves makin the implicit theories of disability explicit by exposing the derogatory nature i: disabiist images and stereotypes and challenging negative attitudes. discrimi nation and oppression. Through their art disabled people are promoting ver different images of disability. Oliver and Barnes (1998) argue that disabilit arts produces. at one and the same time, a culture of resistance an celebration. Morrison and Finkelstein (1993: 27) state that, “The arts can hair ' a liberating effect on people . . . having someone on stage conimunicatin ideas and feelings that an isolated disabled person never suspecred wer shared by others can be a turning point for ntany.’ The active participation of disabled people in disability arts does, in itsel; combat images of passivity and dependence and can raise political awarenes and self-esteem. As Corbett (1996} states; One of the distinctive features of this assertive energy. found in ail groups that seek. an identity which fosters their proud image. is in its focus on artistic expression. Whether it is in photography or art, sculpture or dance, acting or singing, disability arts has become a definite part of the new language of a political movement that seeks a wide audience and which supports diverse voices celebrating the joy of difference. (Corbett 1996:25) An example of a disability arts organization is DASh (Disability Arts in Shrop shire). Ruth Kaye, a visually impaired writer and poet. is the chairperson u DASh and was interviewed for this chapter. Below is one of her poems whicl portrays her experience as a visually impaired person: Seat‘ [ asked for an empty seat. She said ‘Over there' And waved her hand in the air. somewhere. At a seat she could see — which meant Nothing at all To me. So I {altered into empty space, We. not that way!’ i could hear the anger in her face Curling to her feet ‘ As she pinched me hard into my place. Into that empty seat And tidied me away So I said “Thank you". DASh was founded in 1992 as the Disability Arts Initiative. it has a Wide range of hinders including the Arts Council, District and County Councils o: UEi’lHHEUUH 13:12:: Ellib4btllld42 HLIMi'fl'iN HtHVlUt‘d I-‘tfl'iisil: iii-’12 Celebrating difference? 73 shrapghiff, the Regional Arts Lottery Programme and West Midland Arts. The ‘membffi of DASh have a wide spectrum of impairments, including learning I difficulties, and practise many art forms including photography. dance, drama, writing. video. embroidery. sculpture and woodwork. Since 1996 ‘ D'ASh has organized a disability arts festival every year where local and estab- mhed artists from all disciplines. and from both inside and outside the region. perform their art. It also funds disabled people to train in mainstream organiz- Vafigans and base yearmround programme of workshops aimed at developing she skills of local disabled artists. DASh produces a monthly news-sheet which ‘ gives information about art events and job and training opportunities throughou’t the UK and abroad. One of DASl-i’s current projects. which gxtci‘ids beyond the organization, is the production of a disability arts book on the theme of Utopia. It will feature many different art forms and will be ‘ launched at a disability arts exhibition in 2003. An annual countrywide exhibition of commissioned work, the DASH- gASH, tours throughout the region and beyond helping to foster the skills of disabled artists and to develop new networks and audiences. DASh is also involved. through an initiative entitled Beyond the Ramp, in addressing access issues for disabled people in mainstream art. An important area of the organization's work. is; to provide a forum for social contact among disabled artists where they can share ideas and experiences. Ruth states that DASh ‘is a very irisndly. open. wide thinking, daring, adventurous and talented organisationf pnsh gives disabled artists the opportunity to see and experience the work of others and to evaluate their own work. Some members of DASh make their living as artists while for others it is a hobby. Ruth, who has had a career in journalism. has written poetry since she was 11. She was always told that it was good. but DASh has given her extra confidence and has provided her with opportunities to publish and perform her work. Although members of flash do not necessarily confine themselves to expressing Ideas and experi- ences about disability, Ruth believes that disability always comes through in their art. She explains: when you're disabled everything you do has disability reflected in it. It has to because that’s who you are, and art is always expressed from who you are. t know when I’m writing about something that is not meant to be about disability you can still feel it in there if you read it in a certain way. Our minds are set around disability and our work shows that. There are no restrictions on how people choose to express themselves at DASh. Although the worlc of some artists may express anger at their situation as disabled people, Ruth is more concerned with finding commonalities and aiding people's understanding of disability by “pricking something in their mind or heart.’ in her poem. ‘The Bucket’, for example. the problem which is portrayed may or may not relate to disability: U2flflKEUUH 13:13 33b4b31342 74 Values and ideologies Tire Bucket 1?“ 2nd 15t 2m 1st 2nd Disability arts is one of the powerful ways in which disabled people hav expressed their positive identity and their personal and collective eaperienc of impairment and disability. Disabled people are creating poSItive images t themselves and are demanding the right to be the mien,r they are — to be equr bot different. Questions for discussion ‘My head is stuck in a bucket And I can’t remove iL’ “Your head? Stuck? in a bucket? Well, can you prove it?‘ ’Listen to the muffled echoes of my voice And hear the rattling tin. You must believe, you have no choicer It‘s a bucket that I’m in Will you take it off for me? And let me reappear? I'm not complaining needlessly — i It isn't nice in here.’ 'Well how did the bucket get there? Did someone force you in? What makes you think that I should care If you are wrapped in tin?’ 'Thc bucket put itself on me Before I’d time to screamr I saw it come determinedly — But thought it was a dreamt It was as if the bucket knew me And picked me from the crowd And now its fastened to me, Like some cold, metallic shroud,” ‘Welir thenr if the bucket needs you And knew your head was bare, I'm afraid I cannot please you. You’ll have to stay in there.’ 1 Is disability arts a personal or a political activity? 2 How far does disability arts affirm and celebrate the experience of dis- ability and impairment? 3 What impact might disability arts have on the majority perceptions of disabled people? HUMQN HtHUlUtH Ffifit 11512 UEi’lHi’ElfilfiH 13:12:: Ellib4btlllj42 HLIMtfltN til-.H'U'lUlzlj l-‘fltlsil: 12.512 Celebrating difference? '7 5 Debate activity Debate; the proposition: Far from being tragic. impairment and disabil- ity am a cause for celebration. The following quotations may provide Wu with a starting point. I can't imagine becoming bearing, I'd need a psychiatrist, 11:1 need a speech therapist, I’d need some new friends, I'd lose all my old friends. T'd lose my job . . . It really hits hearing people that a deal person doesn’t want to become hearing. 1 am what i am. (Shakespeare et a1. 1996; 184} when I go out I don't know whether I'm passing sortieone ‘I know Lu- not, unless they speak to me. And I feel shut: off a bit. I feel iso lated by that. Because i used to go along that path and people used to say “Hello, hello there” you know. Now I go passed and nobody . . . it's a feeling of isolation . . . I've lost all my social life. I've lost all that, apart irorn'rny family, (French et a1. 1997‘: 38) Further reading Linton, s. (1998) Claiming Disability: Knowledge and identity. New York; New York Uni- versity Press. ‘ Mason, M. (2000) Int-army Hyman. London: Working Press. Mon-isr J. {1991) Pride against Prejudlce: Transformng Attitudes to Disability. London: The Women’s Press. Swain, J. and French; 3 (2000) Towards an affirmation model of disability. Disability and Society, 15(4): $69—$52. - ...
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