Hydra Versus Cyborg

I have a strong fascination with body art. I have always been captivated by tattoos and to a lesser extent non traditional piercings. In part my interest stemmed from the stigma attached to both the disabled body and people who knowingly modified their body via tattoos. In the last twenty years society has experienced a veritable revolution in disability and body art. Today we people with a disability are protected by law, civil rights legislation known as the ADA. Indeed, we have had 40 years of progressive legislation all designed to empower people with disabilities. In body art, tattooing is now acknowledged to be a fine art. Tattoo artists and their customers are no longer restricted to bikers, sailors and other social outlaws. Today anyone and everyone seems to have at least one tattoo. I love this change and hate it at the same time. It is great people are more open to body art and always look forward to seeing art literally walk by me. However, I mourn the way tattooing has been commodified by television shows and mundane things like housewares and clothing . Likewise, some time I miss the old days when I fought an up hill and pitch battle for access and disability rights. Don't get me wrong, equal rights is still a battle for people with disabilities but an ever so polite one. How does tattooing and disability relate beyond the concept of stigma? How we perceive the body, the tattooed body, disabled body and modified body in the broadest sense of the term has undergone a radical transformation. We take for granted the incorporation of the body and technology. But how we define, value and perceive that technology is what captivates me. I think my wheelchair is the essence of cool. Others see it as the ultimate symbol of disability. I think my mother's prosthesis is also cool. Others look at the loss of a limb and not the technology that replaced it. This too adds a layer of complexity. The mixing of technology and the body, much of it from the health industrial complex is dependent upon how we value a given device. Cochlear implaints for instance are valued and an entire industry now exists around their usage. Do we value interpreters for the deaf? Not so much. How about hearing aides for the elderly. No this is not valued or covered by health insurance. Who cares if the elderly can communicate.

The thoughts above were prompted by a post by Wheelchair Dancer on February 27 entitled Crip Anatomies. She wrotte:

"I am beginning to be disturbed by the almost universal insistence that my body, my flesh body that is, disappears when I gain an assistive technology body part. I would rather begin to investigate myself and my movement potential as a kind of hydra. And I do mean hydra instead of cyborg. In cyborgs, the mechanical and the fleshly are distinct but fused into one humanoid and recognizably humanoid organism. There's no excess; technology replaces the flesh bits. Hydras seem to allow for the possibility of the technical and the flesh to continue to exist together, even if they organism they jointly create is now akin to that which traditionally has been relegated to the category of freak or monster."

I love the idea of hydras. Something about cyborgs have always bothered me. Perhaps it is my horror of Star Trek Borg like organisms or cyborgs from the Terminator movies or if you want to go farther back to Frankenstein. The essence of these cyborgs was the destruction of the creatures humanity. In some ways my wheelchair does the exact same thing--it destroys my humanity because all people seem to notice is the wheelchair and not the human using it. Hydras seem to incorporate both the human and technological component. Rather than seeing a freak or monster I see a unique human being, one that has done what we human beings have always done--adapt. I am paralyzed and I have adapted via my wheelchair. Blind people adapt via use of a guide dog. These sort of observations could go on and on. The point is we as a people have melded technology and the human body in ways never dreamed possible 20 years ago--roughly when the ADA was passed into law. What we are slow to change is not technology but how we perceive those advances and inventions. It is here where the problems lies. We value cell phones, computers, the internet, televisions and gaming platforms. One can access these technologies with ease. Why our choices are diverse and as varied as the colors of a rainbow. How important is this technology? Our economy would crumble without it. Now try and access the usage of a wound vacuum such as the one I used or purchase a wheelchair. All of sudden our choices are severely limited. Wound vacuums are not covered by insurance. Wheelchairs are covered but you get a stripped down model that will last a year or two. And we are talking about high priced items. Wheelchair can easily top $8,000 to $10,000 and more. Try and service a wheelchair in less than 24 hours and you are out luck. What happens if yoru cell phone or computer breaks? It can be serviced or replaced at a host of places. Just today I saw that happen when I bought a fancy new cell phone. This to me is an obvious social issue. One that requires a social revolution comparable to the technological revolution that has already taken place. I for one hope to see more hydras working on the problem.

Don't Worry Be Happy

Okay, I am steeling the title of this post from Bobby McFerrin's well-known song. I love this song as I take worrying to an Olympic level. I am in other words a world class worrier. My worries have worries. I worry if I am not worrying. I worry about everything. The apple does not fall far from the tree--my father was a gifted worrier too. One thing I do not worry about it is being happy. Sure the last six months have been very hard. Yes, I worried I was slipping into an abyss of depression. Not so now. My good days far out number the bad. I am verging on healed and am busy making plans for the future. But prior to my wound I would classify as a happy person. Yes, worriers can be happy. I was not always a happy person by nature. My happy view of life was one of the few good by products of divorce. I was always a planner--I planned years in advance, set markers to reach toward given goals and was driven. I remain a driven person but do not plan my life or set rigid goals to reach. Raising my son taught me so much about life and happiness. But here I am meandering too far from what I want to write about, specifically the simple fact I am a happy person. I love my life. It is rich and full. I get great joy from teaching, writing, sports, skiing and kayaking, and enjoy the company of my family and friends. Beyond my own happy existence, I can readily report that most people I know with a disability are also happy. Sure we people with a disability rail against social injustice but separate this from our overall happiness.

Being happy and having a disability are thought to be mutually exclusive. The psychological and medical literature is clear--we people with a disability are not supposed to be happy yet we are. Of course such sentiments are buried under academic jargon. But I assure you the general idea that disability excludes happiness dominates social discourse. It is revealed in headlines in newspapers, stories of overcoming disability, and other archetypes associated with disability. The general belief is that the worse a disability the more likely it is for that person to be unhappy. I think this notion is grossly wrong. Happiness and disability have nothing to do with one another. If you were miserable before being disabled I bet the odds are good the same person will be miserable after they are disabled. This reminds me that I was once told by a friend that I was a wise ass before I was crippled and that I remain a wise ass. Disability did not change me. The point is happiness and relating it to disability is misleading. Misleading in the extreme. Happiness or lack of it is not the problem people with disability encounter. No, our problem is social isolation and a refusal on the part of society to negotiate or accommodate our difference. In my case, the country remains largely inaccessible to wheelchairs. There is no real social commitment to making the country accessible. Sure we have the ADA that attempts to force businesses and school to be accessible but no one aside from people with a disability really care about access. Like it or not access remains poorly understood and under appreciated. I often see access as the first line item cur from limited budgets. People simply do not care nor do they want to spend any money on said access.

Social isolation and happiness are two very different things. Social isolation can lead and often does to depression. But no one asks why are people with a disability socially isolated to begin with. These thoughts were prompted by an article in the British Journal of Medicine. The article concerned the "well being" and "happiness" of people who are locked in or experience locked in syndrome. If you want to understand what it is like to be locked in read Jean-Dominique Bauby's poetic Diving Bell and the Butterfly. Few books move me to tears but his book did. I cannot imagine what it would be like to be locked in--unable to move at all with one's mind intact. Of course some people also look at me and think the same thing--I cannot imagine being paralyzed. As I often joke with others I cannot recommend the experience. But paralysis, even locked in syndrome, has nothing to do with happiness. And the researchers who wrote in the British Journal of Medicine seem shocked. People with locked in syndrome are happy. The majority of people with locked in syndrome are happy. Imagine that--happy disabled people. Happy severely disabled. Its a miracle! No, its not. The shocker to me is that people, your average person as well as people in the health care profession, do not get it--yes we people with a disability are happy. Oh the nerve! I guess we people with a disability are supposed to be miserable. You know pine to be "normal" again. Well my idea of normal includes paralysis as an integral part of life. Do I want to be paralyzed? No. But who among us considers our bodies ideal. Men often wish they were stronger, more fit or had more hair. Women want to be taller, slender and have a larger bust. Only a tiny percentage of us meet the cultural ideals of body types. We simply make do with our strengths and weakness. In this we people with a disability are identical to our peers who are bipedal. We do the best with what we have to work with. I have severe spasms. I use those spasms to my advantage. When I transfer I use the spasms to pull my wheelchair toward me. I thus do not really need brakes on my wheelchair. I could offer many other examples but I do not want to be labor the point. We people with a disability are no different than anyone else. We can be happy, sad, in love, alone, and experience anything your average bipedal person does. The problems we have, the physical ones are obvious and many like me let their freak fly. If there is one good thing about having a disability it is that I do not worry about what others think of me. The odds, I know, are very good, strangers do not think much of my existence. This is liberating in many ways--I am free to be who I am. Indeed, it is a position of power in some ways. People like Ed Roberts knew this and called it cripple power. Hence we all have the power to be happy--disabled and non disabled alike.