The Human Body: Can Disability Be Cool?

When I think of my wheelchair I think one thing: indispensible. I can assure you crawling is not an efficient means of locomotion. I cannot go far on the rare occasion when my wheelchair has a mechanical problem. I firmly believe wheelchairs need to be rugged in the extreme. When I get a wheelchair frame on the day it arrives I drop it out a third story window. If it survives the fall it is good to go. I have high end hubs and wheels. I have top notch upholstery. I change all parts that experience wear and tear on a regular basis. When I travel or go out on an errand I always carry a spare tire, inner tube and pump. I am in fact entirely dependent upon my wheelchair for locomotion. This dependency does not bother me one iota. I am very attached to my wheelchair. I love that it empowers me. It makes my life go. I feel at home in my wheelchair and there is a bond that is hard to describe. I was thinking about this bond as well as how frail the human body is this weekend. I am coming to the end of my journey with my wound. Within a few weeks or at most a month or two I will be up and around. I have found myself thinking that I want to in some way remember this time in my life. One way to remember is to modify your body. In a way I have already done that: I have grown a beard. I look like a paralyzed Santa Claus. My hair has little grey but my beard is white. But I was thinking of something more. Perhaps a tattoo or some other permanent mark. Perhaps some intense experience. I want to do something to remind me of this dark time. And if you think I am exaggerating I suggest you spend six months in bed in your own home.

My thoughts above have me looking through various body art books. I have an intense interest in body art and modification. I am thrilled and appalled at the way tattoos and body art have gone mainstream. I am thrilled because tattoo as an art form, a fine art, is now widely acknowledged. I am appalled because an under ground art form has been transformed and commodified. One can buy tattoo purses, wallets, sheets, lap top covers and Sailor Jerry rum to mention but a few items I have seen. The American Museum of Natural History even had an exhibit many years ago that thrilled me--until I saw the gift shop and how much it cost to enter the exhibit. The rise of body art has caught the attention of many academics. These academics talk about the post modern or post modern physical body. I lecture about this in one of the classes I teach, Body Art and Modification. I always hold this lecture off for the end of the term. It is a hard concept to grasp, the post modern or post physical body. I quickly learned to use popular culture references--the Terminator movies or any other reference to cyborgs. Students get this. They are all over this as it excites their imagination. I refer to prostheses, chips implanted in the brain, hearing aides, glasses, pace makers etc. The technology students get--they get it way better than me. It is an integral part of their life and upbringing. But they fail to see the whole picture--or least struggle with it. What do they struggle with: In the words of Stephen Kuusisto:

The post-physical body is a confluence of material reality and imagination but it is also co-determined by or within politics. The production of material culture is therefore still a matter of 19th century economics. Accordingly the cyborigian person with a disability is a hostage of sorts. We are, it seems, living in the age of the promissory “improved” body—yet that body is still stuck between the territories of production (politics), reproduction (material expense) and imagination (compulsory normativity).

Students, and I would venture to guess the average person, does not get the hostage reference used by Kuusisto. Sure technology is cool. The mix of technology and the human body is even more cool. But that interplay is subject to many other variables. Politics, culture, and economics are major influences. Wheelchair technology, especially power chair technology, is amazing. It can transform a person's life just as my wheelchair has changed mine. But what good is that technology if it is so expensive it cannot be utilized. And wheelchairs, wheelchair cushions, and the bed I am in right now are way past the budget of most people. This does not begin to address the issue of health care coverage of supposedly "complex technology". Worse yet, wheelchairs and associated needed adaptive devices are not seen as empowering by business people and politicians. They are seen as just costly. Socially there is stigma attached to some technology. People do not react positively to a power wheelchair. They are big, bulky, and powerful. People seem to want to leap out of the way or stare. I saw this first hand this weekend--I was able to get out and I was at the Home Depot. A man with his family was shopping. The man used a power chair and it was like watching Moses part the Red Sea. Wherever he went people scattered. This man's wheelchair was empowering to him but to the rest of the world, or those shopping at the Home Depot on Saturday, he was a person to be avoided.

Given the above i am skeptical about the post modern human body. Our acceptance of other bodies is socially based. The technologically to change the human body exists and it may be empowering but that empowerment is socially decided or constructed. To me my wheelchair is cool technology. To others, it is a sign of weakness and infirmity. Are hearing aides the elderly use cool? In a word no and I haste to ad not covered by health insurance. In contrast, cochlear implants are accepted technology and an entire industry now exists to support them. I could go on with multiple other examples but the point i am making should be clear. In only one instance have I seen a mix of technology and disability negate the stigma attached to wheelchair use. This is when I ski--sit skis for some reason are not only accepted but to a degree are socially prestigious. We can see this in the incorporation of mono skiers in the X Games and open acceptance of adaptive skiers at most ski resorts. I wish I could duplicate this elsewhere. In the mean time I am content with my white beard. It seems to have had a good impact on young children. I noticed more smiles from little kids in the few instances when I get out. Of course another interpretation could be is that I am simply getting old and they are smiling at the old guy--and the wheelchair and old age match in their minds. I do not want to think this way and will instead think I am more like Santa Claus.