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Thursday, September 22, 2011

Identity and Disability: Part II

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.

Wednesday, September 21, 2011

Identity and Disability

The below was inspired by Rachel Cohen-Rottenberg who maintains a blog I read on a regular basis entitled Journeys with Autism.If you have not read her work I urge you to visit her blog. Rachel asked me to write a guest post in September. I chose the topic, identity because it is a central concept in anthropology and key to social progress for people with a disability. Please note I finished the post a full nine days before the end of the month.

Identity and Disability

I am a crippled man. I am a proud man. Hear me roar. Yes, I am ripping off the 1970s women’s movement song “I am Woman” by Helen Reddy and Ray Burton. Being a crippled man is an integral part of my identity. I cannot imagine life without paralysis. I never think about a cure to spinal cord injury, walking or running. Such thoughts are for others; people who without question accept that walking is the only means of locomotion. As a result of my paralysis and wheelchair use I am a member of a minority group even if the Supreme Court does not agree with me. I am often asked about cure, about walking, about wheelchair access, about sex, about work, about family. These questions make one thing clear--my privacy is not respected. I am not respected. I have a stigmatized identity. Hence, well meaning people ask, “Wouldn’t you want to be cured?”, or “Wouldn’t your life be easier if you were not paralyzed?” These types of questions are so far off base it boggles my mind. The people that ask me these questions never think why. Why is life with a disability such as paralysis difficult? The answer is obvious to people with a disability. Our physical and social environment are designed for bipedal people who learn at a prescribed rate. Deviate from the norm in American society and you will see the dark underbelly of a puritanical society. I know all about this because I have seen it for the last 30 years.

I am intimately familiar with the concept of identity. Identity is of central importance to anthropologists. It is a powerful organizing presence in all cultures. When we think of identity, social structures that come to mind include ethnicity, nationalism, religion, sexuality, gender, etc. When we seek to protect a given culture or minority group the underlying belief is that people have identities and that their identity is a vital part of their concept of self. This is a given when it concerns religion, gender, nationality and sexuality to mention but a few types of identity. No one would accost a woman and ask would you like to be a man? No one would dare ask a black man if he ever wished he was white. In sharp contrast people, strangers, feel free to ask me if I wished I could be cured. The idea I consider disability to be part of my identity simply does not cross the mind of others—non disabled others. Disability for the vast majority of Americans is thought to be a medical or architectural problem—one that was solved a long time ago when the ADA was passed into law. This is dead wrong. Prejudice is alive and well. I experience it, as do all other people with a disability.

So why is identity so important to people with a disability? Disability identity is important because it will lead to social debate and careful consideration of disability well beyond the narrow way it is currently perceived. In the Foreword to Simi Linton’s ground-breaking text Claiming Disability Michael Berube noted:

"If disability is not understood in terms of complex, overdetermined and sometimes tenuous relations to identity, it will not be sufficiently incorporated into the curriculum of the liberal arts or into the definition of what constitutes the “humanities”. And if we do not imagine “disability” as a broad general subject that shapes the humanities, it is all the less likely that we will manage to imagine disability as a broad, general subject that shapes public life and public policy."

Like most people, disabled and non disabled, I did not always think this way. Disability is afterall the only minority group you can join—and not by choice. What connects all people with disabilities is a shared identity and the routine and unacknowledged violation of our civil rights. Disability scholars call the prejudice people with disabilities encounter ableism. While we people with a disability certainly understand ableism is a form of oppression when we confront others and assert ourselves we are classified as bitter. I am routinely told I have a “chip on my shoulder”. When told this I sarcastically agree—hence I identify myself as a bad cripple—one not afraid to assert my civil rights. If this puts a chip on my shoulder than I plead guilty. This takes some guts, we people with a disability are expected to be subservient, content with what society is willing to dole out for us. When we do not adhere to our prescribed role our presence is not wanted. The type of disability is not relevant—it is a variation on a single belief that is deeply ingrained in schools, businesses and our culture. One person has railed:

"People have a great deal of prejudice about autism& other developmental disabilities. I’ve been bullied out of activities and classes because I am autistic; I’ve been discouraged from even trying others. People and professionals who are familiar with autism but unfamiliar with me assume that I am less capable of many things I am—usually in a patronizing & insulting way. It is often assumed that I cannot be good at some of my hobbies and simultaneously assumed that I have some sort of magic autistic savant skill. That part of being autistic really sucks—having to prove my humanity & my individuality over and over and over again is exhausting (Timetolisten.blogspot,com)."

I would venture to say every person with a disability can relate to the quotation above. I have repeatedly been lauded for the ordinary and told I am amazing. Conversely, I have been told I cannot do many ordinary things. This is nothing short of dehumanizing. It is also why all people with a disability should embrace an identity closely linked to disability with one proviso: disability identity is not defined by a given disabling condition or body centered feature. Identification here is not a medical diagnosis or arbitrary label. With an identity tied to disability it is logical to conclude our experiences are similar. The prejudice we encounter socially sanctioned and deadly. With this realization I shudder to think of how many dreams and ambitions have been crushed. No one would tell a non-disabled child he or she cannot do something. That is an educational anathema. But this is exactly what happens to people with a disability. Frankly, I have had it. I will not tolerate being told what I can and cannot do. I know with an identity tied to disability, by being proud and disabled, I can resist and thrive.