Claire Roy who maintains the wonderful blog Life with a Severely Disabled Daughter has thrown down the gauntlet challenging this bad cripple about identity. If you have not read her blog I urge you to do so. She writes with great passion and I admire her work. I am happy to engage her here in large part because she poses an excellent question. Specifically, she wonders how issues of identity “relate to my daughter and others like her… those with severe intellectual and physical disabilities”. Roy writes that the slogan “disabled and proud” does not resonate for her daughter who cannot express herself and is entirely dependent upon others. Roy is blunt in her assessment of her daughter’s condition noting, “if it was possible to fix it, we would… fuck identity”. Obviously no one wants to have a permanent disability—myself included. For those of us with an obvious physical deficit it is our most identifiable feature. But Roy wonders is this identity. In a word no.
Identity in terms of disability is not defined by a medical diagnosis. Disability cannot be defined by labels such brain damage or spinal cord injury nor socially imposed categories of existence. This harkens to a medical model of disability that for decades determined the identity and roles millions of people with a disability had. The focus here was not on what a person with a disability could do but rather on their physical and mental limitations. By framing the person with a disability within the realm of pathology or limitations disability was individualized. It was a personal problem unique to themselves. This voided any possibility of systemic social analysis. The phrase divide and conquer seems apt. Disability was thus perceived only in relation to normal—meaning typical cognition and typical physical ability. We people with a disability were rendered powerless—the symbolic and real life opposite of the norm. This unacknowledged belief system was the organizing principle for decades. It led to special schools, reliance on institutional care and its modern equivalent group homes. Separate when it came to disability was socially acceptable.
Obviously I reject the medical model and instead embrace an identity that incorporates my disability (here I am leaving aside a discussion of the social model of disability). Some people with a disability can be proud of their disability in the sense it has formed who they are as a person. Here is the fundamental leap people need to make—when I see a person with a disability one thought comes to mind—adaptation. How has that person coped and adapted to a physical or cognitive deficit. I do not see limitations but rather a whole set of ways that individual has adapted to his or her circumstances. This is why I am no different from any other person with a disability. We all adapt. When I think of my identity, my disability is a central part of that thought process. However, I do not ever think of myself in relation to bipedal locomotion. I think how can I adapt a given activity to my abilities? If I want to ski I need a sit ski. If I want to kayak I know I need a slightly higher back. I do not think or ever wish I was “normal” so I could kayak or ski like others. Likewise when I see or read about Roy’s daughter I think how does she help her daughter adapt. What is it that she can do? How does she get the most out of her physical body and cognitive ability? Comparing Roy’s daughter to a person with “normal” cognition is as pointless as comparing my wheelchair use to bipedal locomotion. Both Roy’s daughter and myself will come away with the short end of the stick.
In challenging disability as identity Roy has led me to think widely on the meaning of disability and how it has evolved in the last two decades. This in turn led me to think about the two of the more controversial articles I have written—the first about Christopher Reeve and the other about growth attenuation known at the time as the Ashley Treatment. When I published these articles some of the responses I received via email were overwhelmingly negative. By negative I mean verging on hate mail. This took me aback until I realized I was questioning the accepted social order. As a close friend put it, no one likes to have his or her parade pissed on. And this in part is the problem with an identity tied to disability. As I see it, there is nothing wrong with being disabled and I mean this in the broadest sense of the term. When I see some like Roy’s daughter I see a hard assed survivor utilizing her cognitive abilities as best she can. When I see a man or woman who is blind with a guide dog, I think that is a cool form of adaptation. When I see a quadriplegic in a power wheelchair I think how fast and how far can they go. When I see deaf people signing I admire the beauty and grace of a language I do not know. I see varying forms of identity that is tied in some way to their unique abilities. All I see are endless possibilities. To me this is an identity all people with a disability share.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Thursday, September 22, 2011
Identity and Disability: Part II
Posted by william Peace at 12:10 PM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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Wow! This was fascinating and I love the focus on adaptation and creativity.
This was a really cool post. I'd never thought about identity being encapsulated by various components of my disability. I wrote an entry about how although my disability may (medically) stay the same, my identity and how I see my "self" has changed over the years. http://perfectlyimperfecta.blogspot.com/2011/08/stable-disability-but-evolving-self.html
Nice to follow the debate... through this exchange, and others, I'm being linked to some blogs by simply amazing people who clearly think deeply about their, or their childrens place in life..THANKS
Fantastic blog, thank you. Your comments re. normality and identity are especially useful as have been struggling with that myself recently.
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