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  1. #1

    phd thesis chapter 1

    Rationale...
    Disability community
    All a person needs is a disability to be assured a place in the disability community. Christopher Reeves is a prominent member of the disability community whether he wants to be a member or not. This does not automatically mean that Christopher Reeves is part of the disability culture. Disability culture refers to an identification with commonalities with other disabled people that make possible a sense of community belonging, unity, identity and pride.

    The failure to pass
    In Stigma (1979) Goffman argues that a stigmatised individual who passes as a normal(non-stigmatised) person often experiences anxiety. The anxiety arises as a result of how much the individual fears exposure. Passing refers to maintaining a non stigmatised image.

    According to Steven Brown, (Creating A Disability Mythology, in International Journal Of Rehabilitation research, winter 1992) the problem has been the way in which our success is measured. Brown States,
    Our Success has been seen in the ways overcame our disabilities not in how we have adapted or used our disabilities to forge ourselves.
    This lack of acknowledgment, by disabled people, of the interplay of personality and disability, is because we have been taught that disability must be overcome. We are taught this in numerous ways, such as having famous people from history who overcame their disability pointed out.

    Brown continues(Creating A Disability Mythology, in International Journal Of Rehabilitation research, winter 1992)
    As long as we buy into the mainstream notion of success through overcoming we are submitting to an ideal to which we cannot possibly remain true. No matter what we do we remain disabled."

    Coming Home
    The process of Coming Home for disabled people can be compared with coming out as a gay person, both are as much a personal as a political statement. It says that I belong. I have found a place where I am accepted. It is a process that comes of a need to be free of the self hate that we are taught by the medical and social models. We are set unfair goals by society which uses the supercrip as a tool for making disabled people feel inferior. This self flagellation is a part of the oppression according to Kelly at http://www.ragged-edge-mag.com/0103/0103ft1.html
    Like inspirational stories of the past covering the "first black to do this" or "first woman to do that," the vignettes have been criticised by activists for their underlying assumption that we are as a group inferior to normalise, thereby making remarkable our smallest achievement. These stories, the critique runs, not only deny group oppression by individualising disability, but reinforce that oppression by seeming to blame the vast majority of disabled people for not achieving.
    We are taught that disability is something to be ashamed of, as users of goods and services, rather than producers of value. Even our creativity, our art, is seen as not having the same value as art made by non disabled artists, because it is seen as therapy.

    Identity and connectedness
    Coming home is a feeling of identity and connectedness that many disabled people don't feel in the company of non-disabled people, it's a new consciousness. Coming home for disabled people is a point of recognition and acceptance of disability not in a negative sense, but as accepting of disability as a part of our own unique personal experience of the world. Disability culture is the collective experience of being home.

    Reflectiveness of disability culture
    It is the belief that disabled people need to associate with other disabled people to show us a non- normative reflection of ourselves. These non-normative reflections emphasise the similarities of experiences, rather than the differences, between disabilities and the way we experience them. For example, most non-disabled people assume that having a disability is frustrating, I am not saying that we don't feel frustration. However, the frustration is not always about what we cannot do. Frustration can sometimes be caused by trying to explain to nondisabled people, that because you can't do something they take for granted that you aren't necessarily frustrated by not being able to do it. It is a relief to find that most disabled people find that having to explain why you aren't frustrated, frustrating. This can be a source of understanding among disabled people. It is this type of understanding that only someone with a disability can appreciate that builds a mutual dependency among the disabled community. For example Stothers says (http://www.mainstream-mag.com/1996/896wgs.html)
    "For years, my own mental picture of myself was a mug shot, and an idealised one at that. At one time, someone told me I should look at myself naked in the mirror to truly see my body. I did it, too. The experience was

    It is only when disabled people talk together that this appears a normal reflection.

    In other words I had to look in the mirror that was me and see me staring back. It is this staring back that has resulted in the richness and appreciation of the wonder of disability as a distinctive and unique culture. Disabled people have begun to collectively and individually claim their history as part of the process of coming home. This history is often not pleasant but is part of the collective experience and deserves acceptance that it happened. For example Nabil Shaban wrote, First to Go (1996). This stage-play is concerned with the extermination of disabled people via the Nazi Euthanasia Programme.

    Disability Pride
    It's about choosing to be with disabled people and identifying who you are with a clear loud proud voice. I have athototic/dystonic cerebral palsy which is as much a part of who I am as my maleness. It speaks of disabled pride. Disabled pride for me means not apologising for who I am, my experiences, my body.

    It is this attitude that says I am disabled and proud of it. It goes to the core of the person. Disability culture is about feeling connected to other disabled people. To come home is about acceptance of the individuals own differences from the mainstream society. We can't accept others differences until we first accept our own individuality. Our experiences are as valid as anyone else's. The rest of society may not be prepared to validate and accept my unique and awkward body, but it is a part of who I am and who I will become.

    The disability rights movement
    The disability rights movement has effectively accomplished a social revolution. To accomplish this revolution, it has relied on the social model, as a means of de-constructing the medical and other models to show the prejudices and inadequacies. For example, there is a lack of a historical understanding of the role and meaning of disability according to Paul K. Longmore and David Goldberger (http://www.historycooperative.org/cg.../longmore.html)
    The medical paradigm dominant in modern societies has framed disability as limitation in social or vocational functioning due to chronic medical problems. By casting it as a matter of pathology, the medicalized perspective has individualised and privatised disability, effectively restricting historical investigation or interpretation. A merely "personal" condition, it defies systematic study.

    The Social model
    The social model has shown the impact of these models and systems of thought on disabled peoples lives. Because the social model argues that disability doesn't reside within the individual, placing the disability within the social and physical structures, it allows disabling practices to be analysed. The social model emphasises the social impact of the environment as the place that creates and continues to maintain disabling practices, it is a useful tool for forcing change. An example of its usefulness in deconstructing disabling practices is seen in the area of access. Issues such as the lack of kerb cuts and ramps which were once seen as an individual problem has been transformed into a philosophy of access for all, including disabled people. However this model is now under attack because of a number of issues that will be discussed next.

    There is no denying the disability community has in the past 30 years gained considerable equality through the disability rights movement and the self help movement. This equality has been won against a background of resistance to change. The social model of disability is a valuable tool for analysis of the status of disabled people with in society this is because it sees the disability not as an individual experience but as a social category. However, it fails to be able to address a number of important issues that effect disabled people, such as the physicality of pain, losses of body function due to disability, and sexuality issues.

    The social model places the disabling experience in the social and built structures of the community. This means that if society were made more accessible and tolerant, disability as a category of experience, will become redundant. According to Longmore (Disability Rag, Sep/October 95) the US disability rights movement has undergone a shift towards recognising a collective identity. In addressing the legal aspects of the past 30 years Longmore,(http://www.independentliving.org/doc3/longm95.html) argues
    This body of laws departed significantly from previous policies because it sought not just to provide more "help" to persons regarded as disadvantaged by disability, but rather expressed and implemented a fundamental redefinition of "disability as a social more than a medical problem."
    In doing so it challenged the rehabilitative medical system, by stating that for the majority of disabled people, prejudice and societies attitudes pose far greater problems than the actual disability. For example, the acceptance of human rights legislation has been passed which specifically protects disabled people, guaranteeing their access as a human right.

    The new cultural model
    An expression of this change in the focus of disabled academics according to Longmore(http://www.independentliving.org/doc3/longm95.html) is found in the formulation of a new cultural view
    The researchers, many of whom are people with disabilities themselves, consider disability not from a medical or social-service perspective, but in terms of cultural formulations and depictions. They look at a range of cultural expression as varied as novels and movies, public policy, architecture, urban planning, philosophy, and law. They gauge how stereotypes -- talk of "abnormalities," "defects," "invalids," even "monstrosities" -- have come to be accepted.
    However the development and awareness of this cultural consciousness probably could not have happened without the success of the disability rights movement, which was grounded in the social model.

    The individual cost of the social model
    This rights movement has won considerable physical and social changes in terms of access to the community. However, a consequence of this emphasis on the social model has been that disabled people have been prevented from acknowledging some of the physiological aspects of their disabilities, by the need to stress the social construction of disability. Many disability activists have now begun to acknowledge the cost to disabled people. For example Nadina Laspina http://www.raggededgemagazine.com/mar98/pride.htm
    LaSpina and Robert know that they're both "losing more function every day, living with pain."
    "And we don't like that either," she adds. "We're not masochists. We would gladly get rid of the pain."
    She continues, "We just don't want to be 'nondisabled.' "
    The article continues
    But the pain does matter. Denying that, and saying everything is wonderful, is not the way to do it," she continues. "Maybe we needed to do that for awhile in the movement, among ourselves. But we may have turned people away too, by doing that."
    "People with progressive disabilities really don't like getting weaker. They're afraid. And in a way we have made people afraid to admit those feelings."

    Disability Culture and Pride
    For Nadina LaSpina and others the acceptance of a disability culture does not automatically assume that a disabled person likes every facet of having a disability. In her comparison with her Italian and female identity she draws this distinction,
    (http://www.raggededgemagazine.com/mar98/pride.htm)
    "I like being Italian, she goes on. "I'm proud of being Italian. There are things I'm ashamed of, like the existence of the Mafia - but these things do not stop me from embracing my Italian-ness. I love being a woman, but I hate going through menopause. But I wouldn't want a sex-change operation just because of menopause. Certainly the pain and physical limitations of disability are not wonderful, yet that identity is who I am. And I am proud of it."

    To put this question of pride into an individual context, almost every disabled person at some stage is asked whether they would take a pill, a potion, or other cure for their disability. To feel that there is nothing worth while about the experience of disability, that in fact the whole experience is a negative one, leaves little room for a sense of self worth. It is this fundamental issue of developing a sense of self worth, that is addressed in the following,
    http://www.ragged-edge-mag.com/jan98/vision.htm
    Bill Stothers says,
    "When you ask people, 'If you could take a pill and not be disabled any more, would you?' they say they wouldn't if it meant losing the experience and the memory of their life as it is now." . . .
    Although it sounds bizarre, the search for a cure is regarded among the disabled as a distraction from the more important process of acceptance and assimilation. ...
    The problem is simply that the social model is inadequate for addressing the physiological and individual aspects of the experience of disability.

    Group identity and Pride
    For a sense of disabled pride to develop we need to be with other disabled people. Describing the process of developing a group identity as part of the process of developing this sense of pride, Nadina Laspina and Robert ........ (http://www.raggededgemagazine.com/mar98/pride.htm) put it is these terms....
    "Disability pride cannot happen in isolation," LaSpina continues. "We see this. To feel disability pride, one must be a part of the disability community."'
    "I see pride most strongly when I can be proud of others in the community," Robert adds.
    If the pride didn't emanate from pride in the disability community, if it's not pride in the "us" of disabled people, both Robert and LaSpina stress, "it would be just pride for accomplishing something 'in spite of' - or 'overcoming' disability.
    "That's playing by the rules of the nondisabled majority," LaSpina says.
    "When we talk about disability pride," LaSpina explains, "we are always talking about accomplishing it as a movement, with each other."

    Disability consciousness
    Disability activists from around the world have been arguing that disability is a culture, and that this has a different meaning to community for this group of disabled people. The process of identifying with disabled people as a culture is the process of a shift in the consciousness of the disability community. It is this move away from individualising the disability experience, separating the individual disabled experience, to a collective consciousness of an "us" that these writers explore. This experience is summed up in the following from a discussion of the meaning of Disability Culture held in Adelaide in 1998 http://www.dadaanat.net.au/text/papers/culture.html

    Some artists with a disability choose not to define their work in terms of disability culture, preferring to be regarded as making work in the same cultural contexts as artists without a disability. Other artists with a disability make work which is influenced or informed by their life experiences or by the nature of their disability. This needs to be a personal choice and remains so within the open disability culture model proposed by Tony Doyle which is not based on dogma or exclusiveness but on flexibility and inclusion. As South Australian artist with a disability John Ways puts it "accommodating other people (without a disability) is my choice, not theirs."

    For people like Doyle, this melting pot mentality, which sees disabled art as art -deprived of and separated from the artists experience of disability, is unsuitable for exploring the notion of disability as an informing spirit of disabled culture. The melting pot mentality fails to see that an artist like the severely disabled Mexican painter, Freda Kahlo, was expressing her sensuality, disability and pain in her art. Her art is some of the most graphically painful art because of her disability which she gave voice to in her art.

    Disabled embodiment and culture
    The social model is silent on issues of disabled embodiment, seeing any discussion of bodies and in particular disabled bodies as problematic. It places the disability in the social realm, seeing the structure of society as the sole or main cause of disability. This places disabled activists in a position that is untenable for long because to maintain the social definition of disability they cannot acknowledge their biological self, this includes pain which is often a signal to slow down. According to Wendy Seymour in Bodily Alterations(1989pg 14) drawing on Turner's (1984) work the Body and Society argues
    I can touch, feel, smell, and see my body, but I need my body in order to carry out these acts of touching, feeling, smelling and seeing. I possess my body in a much more thorough and immediate sense than I could ever possess other objects. Yet although I possess my body in this thoroughgoing sense, the very intimacy of possession is the source of my destruction, since the death of my body is also my death. Disease that involves loss of bodily function or control challenges the intimacy of the relationship between body as being and body as resource, and can constitute a most profound form of alienation.

    The social model of disability however fails to accept the body, and as such fails to address, in depth the body of Freda, her pain, sensuality and sexuality.

    Authenticity
    This group writers and analysts who write from a cultural perspective of disability are interesting because they are claiming a distinction, an authenticity, an authority, to speak about disability that has not been recognised, let alone analysed. For example the following taken from http://trace.ntu.ac.uk/access/debate.htm
    Let's have a look at the background:
    The idea for this project and with it the main responsibility including rules and regulations came from the National Disability Arts Forum.
    Read: "Disability Arts".
    Not "Arts and Disability".
    Disabled people themselves have coined this term to identify the arts produced by disabled people that fill a yawning void - the arts that are informed by the experience of disability and which validate this experience.
    further down the article continues
    We are trying to create opportunities within all sectors of the arts world for disabled artists whose prime concern is not a longing for assimilation into mainstream arts, but who want to explore their own experience and find an audience that is receptive and able to appreciate what they are doing.

    When disabled people argue that the creative value of their work is intrinsically connected to their disability as an expression of who they are, it challenges fundamental assumptions about disability and art. The online debate over The Citrus Affair, a fiction writing contest for disabled writers, one of whom was Tom Shakespeare, is very much about this consciousness. It is this disability art, this disabled creative force, that is at the heart of this thesis.

  2. #2
    ty, abu...

    joy
    "You've got to learn to love the little things in life in order to be happy, like a sip of whiskey in the evening or a beautiful morning sunrise."
    ~Gus McRae, "Lonesome Dove"

  3. #3
    I do not want to be part of disability culture - put me back in the AB's please

    this is SO depressing

  4. #4
    Senior Member ChesBay's Avatar
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    It's late so could just give a quick read ... looks good. It's been a while since I've spent time in the world of academia but just a few thoughts off the top of my head...

    * I am "hearing" mostly about physical disability in your writing ,do you perhaps want want to narrow the scope to that?

    To effectively write about the "Disability Community," it seems important to take a "cross disability approach," including but not limited to persons with cognitive disabilities,( mental retardation, TBI, etc.) Mental illness; the "Deaf Community"; sensory impairments (visual / blind); autism; on and on...

    In my opinion it is a very good thing that Civil Rights legislation such as the "Rehab Act/504", "ADA", have benefited all. Also some parts of the disability movement which were fragmented in the past because of funding streams, service delivery systems and other reasons (MR Vs. Physical Disability for instance) have been merging and for the most part I view that as a good thing ... especially when the "Disability Community" needs people to "show up in numbers."

    Still a ways to go in this area (cross disability representation and consensus on some issues and priorities) as there can be different agendas and needs ... many commonalties shared too though, attitudinal barriers, employment, civil rights...

    Just some thoughts not criticisms ... do you want to narrow your thesis statement down a bit for the sake of specificity and avoidance of generalizations which may not be applicable to all persons with disabilities? Or, get very ambitious and research and cite supporting literature for true "cross disability representation" to reflect as many dimensions of the "disability movement and culture" as possible.

    Important and interesting work ... keep posting.
    Paul

    Edited to say... just reread, your Disability Communtiy & Culture Background sent me off on a tangent of sorts... You final paragraph on Disability and arts is interesting topic.. the build up to it loses me a bit. One last thought and can be issue of debate... I always view "People First Language" as more enightened. Artist with disability rather than "Disabled Artist".

    I think of "Steven Hawking" as a "Cosmologist" rather than "Disabled Cosmologist."
    http://www.vsarts.org/resources/gene...g/language.cfm

    Off to bed...

    [This message was edited by Paul on 04-18-04 at 02:53 AM.]

    [This message was edited by Paul on 04-18-04 at 02:59 AM.]

  5. #5
    Basicly I am looking at writers who have assumed this position and are exploring the meaning of disability in their writing. I am not loooking at autobiographical writing. The reason for this is that I am interested in the creative areas and also dont want to get into the area of life writing, I am therefore restricting it to fiction, poetry, and plays. While the debate is still in process as to whether disability is a culture there is a large group of writers who approach it from o cultural approach.

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