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Tuesday, June 15, 2010
Adaptation and Enhancement
The trailer for Fixed has put my brain in over drive the last few days. I am torn about the very idea of being fixed and title of the film. I do not think my body needs to be fixed. Let me be emphatic: I am quite happy with my body the way it is. I have no interest in stem cell research or a cure for paralysis. This does not mean I like being paralyzed. But paralysis is a fact of life for me and will not change. However, I can change society and the cultural response to paralysis and disability in general--this is why I write about and study disability. I want to make a concrete contribution to the lives of those with a disability. This effort is an uphill and often thankless battle. Disability is perceived to be a problem by many people and institutions. The medical establishment in particular views disability as the ultimate symbolic failure and seeks out cures no matter how impractical. I am not opposed to pure research but rather deal with the here and now. And right now I am wondering why disability in the broadest sense of the term yields so many stupid and needless inventions. I see silly and impractical inventions hailed all the time and can only shake my head in wonder. For example, a few months back I read about an exo-skeleton that enables a paraplegic to walk. This exo-skeleton may have a cool factor but is totally impractical. A wheelchair is a far superior technological device that is not only empowering but liberating. Yet no one thinks a wheelchair is cool. A wheelchair is bad, the ultimate symbol of disability and dependence. This is why the notion of being "fixed", the title of the trailer and film is so misleading. It ties directly into negative assumptions about disability. I deeply resent the popular cultural assumptions about disability because they are misguided and wrong. I do not see anything wrong with disability. Instead I see great beauty in disability--it brings out the best in the human spirit and our ability to adapt. And if we humans have proved anything we are very good at adapting--we have been doing it for millions of years. If you doubt me I suggest you read the work of Charles Darwin.
Why do I see beauty in disability? It has nothing, and I mean nil, about "overcoming" a disability or being "inspiring" to others. Such notions are demeaning and destructive. I find the way people adapt to their disabled bodies fascinating. One must discard all you have been taught and think in a radically different way. You must do this daily. This can entail something as mundane as how to navigate a street or get from the ground back into a wheelchair. The environment we people with a disability must navigate is hostile both practically and socially. Architectural barriers remain common place and discrimination is rampant. Thus we learn to adapt. This does not mean I am opposed to pure research for cures to a host of disabling conditions. I am also not opposed to human enhancement and technology. But my idea of enhancement does not often jive with people in the field. Enhancement in my estimation is too often rooted in a medical or profit model of disability. What people fail to realize is the beauty of disability and how it enhances our life. In the words of the artist Reva Lehrer: "In order to have a good life with a disability, you have to learn to re-invent your world almost hour by hour. You discover ways to re-imagine everything, and how not to take the average answers to everyday questions. There is a great deal of creativity in disability if you decide that "reality" is just a raw material for you to mould. So many times, these re-inventions have been the keys to open new doors for everyone."
The new doors Lehrer describes can take many different forms. These forms do not include sitting around hoping, praying or supporting a cure to paralysis. These doors do not include any technology that is an impractical attempt to mitigate disability, to make others feel more comfortable with the disabled body. Don't misunderstand the point I am trying to make. I support all efforts to enhance the quality of life of people with a disability. At issue is how is that life perceived. For instance, I keep up with the latest technological gadgets and advancements in the wheelchair, bike, and ski industry. I rapidly incorporate those advances into my life. None of this involves a desire to walk, to fit in and make my disability disappear. In my case, paralysis is part of who I am as a human being--it is an integral part of my identity. I see nothing wrong with my body. This viewpoint is radically different from what people in human enhancement think. They see the body as a platform to incorporate and improve the human body. Well, this works in some case but not all. For instance, I laud the advances in prosthetic technology. Such advances improve the quality of life for amputees. But I do question where and why such advances have been made. The fact amputation is one of the "signature" wounds of the Iraq war cannot be ignored. It is undoubtedly a factor in the evolution and advancement of such technology. At the other end of the spectrum we have the Ashley Treatment and growth attenuation. I consider this ethically unacceptable. It is a medical solution to a social problem, one that could be solved if we as a society provided the appropriate support services for those with cognitive and physical disabilities. Hence I find the words of people like George Devorsky who supported the Ashley Treatment disturbing at best.
As to the film Fixed that prompted me to write, I have great hopes it will be well done. The scene with John Hockenberry and his family is wonderful. I loved his book Moving Violations and have found his subsequent comments about disability thought provoking. I am usually in agreement with what Hockenberry has to say about disability. Interestingly, he has played with the idea of how to make disability cool. He has put lights on his wheelchair, painted it different colors and listened to some smart people--his children. I too listen to kids as they have no preconceived ideas about disability. This makes me wish we could put children in charger of the durable medical goods industry that has a penchant for treating its customers like dirt, making over priced and inferior products, and stifling innovation. Why is this this attitude common? It gets back to what I have been writing about since I began this blog--valuing the life of those that live with a disability. We are afterall creative people that exemplify human adaptability.