"All human beings are born free and equal in dignity and rights." -- Universal Declaration of Human Rights (1948) article 1
“Who could say I have ‘no worthwhile quality of life’? I am sure that no doctor could have predicted when I was 28 days old that despite my physical problems I would lead such a full and happy life. I do not doubt they were ‘acting in good faith’ when they advised my parents to abandon me, but that does not mean their advice was correct.”
-- Alison Davis, “Right to Life of Handicapped,” “Journal of Medical Ethics 9 (1983)
If you think about it, we able-bodied citizens are one step away from disability. The misjudged dive, the snowboard mishap, the car accident, and the botched bungie jump seem obvious in this regard. But some of us learn lessons the healthy never think about. Time is a factor here. Most of us have worn casts, used crutches, and lost our voices. And so we temporarily consider what it must be like for the permanately disabled. Others of us contract serious diseases that bring us closer to the brink of disability, and therefore force a longer consideration of what it’s like to, like McGee, not be able to speak, like McGee, to be voiceless.
Cancer, in all its manifestations, offers long and short term experiences of what it means to be disabled; To lose the small motor skills required to turn the ignition key, to feed the parking meter, to use the credit card meter at the pump, to button the pant and tie the shoe, to swallow, to walk, to eliminate. But even in this, neither McGee nor I can know what it means to experience disability as a form of identity. What we do understand, however, is this: there is a certain stigma attached to disease, and those who have suffered irreversible injuries know the social discrimination that accompanies the wheelchair, crutch, and walker.
In “Disability Studies”(2008), Professor Tobin Siebers suggests (I think) that, to some extent, traditional social attitudes toward disability derive from the medical definition of disability as “a defect that must be cured or eliminated if the person is to achieve full capacity as a human being”(3). What deserves scrutiny here is the correspondent nature of the terms " disease" and "disability." A slippage that fosters the assumption that being disabled precludes the possibilty of achievement, contentment, and happiness. The rhetoric of "cure" and "elimination" may fit a medical model, but seems inadequate as a descriptor of disability. Simply put, disability is a state of being, cancer is a disease. During its reign, cancer, whether temporary or lasting, induces a feeling of being defective, as diseased, as incapacitated.
My friend, whose son has Down Syndrome, asked me if I felt “inferior” when I was sick. After thinking a bit, I decided I had a feeling akin to this, but not exactly that. I would say excluded, or ignored, would be a better description, at least for me. It was as if the world was passing me by. Being invalid, in home-immuno-isolation (and here I shudder to imagine what folks like Greg Mingay, who had a marrow transplant, have gone through), and gazing out the window with the turn to Fall, made me melancholic, depressed, afraid, and, in a science-fictiony way, obsolete. Dave’s question made some sense to me when I considered his experience of having an intellectually challenged (I’m borrowing Sieber’s term here) son. Perhaps being cognitively and intellectually challenged is sometimes a kind of disability where the existential feeling of being “ignored” manifests itself as a form of negative identity legitimized by a society that encourages “enforced systems of exclusion and oppression”(3).
A key idea in Seibers’ book is the “defect” is less in the person than the social context that defines them, or perhaps better, in the way their public identity is prescribed, or circumscribed. If nothing else, my readings on BIID (Body Integrity Identity Disorder) reveal more about the radical polarity between exotic and romanticized media representations of disability (fictional films, like “Boxing Helena,” “I Am Sam,” and “Charly”), and exclusionary and reductive representations of disability (news images that sensationalize stories like that of Terry Schiavo, and questionable representations that masquerade under the umbrella of aesthetic value [or do they?], like those of Diane Arbus) in the cultural perception of disability – there seems to be no middle ground.
Why else would not having a limb become such an obsession, if not for the fact that the limbless are percieved as so radically different. As Siebers has it, “It is as if disability operates symbolically as an othering other. It represents a diacritical marker of difference that secures inferior, marginal, or minority status, while not having its presence as a marker acknowledged in the process”(6) (It should be noted here that Siebers is not using the term minority here in the sense of identity politics).
It may be that BIID is a direct consequence of society’s failure to recognize that “Disability is not a physical or mental defect but a cultural and minority identity”(4). Changing the social rhetoric and fostering the cultural integration/assimilation of disability might go a long way toward demythologizing what a “wannabe” wants to be.
It is the way disability is culturally understood, through a network of social apparatuses, at the center of which, what Siebers calls the “Ideology of Ability,” shapes the kinds of representations of disability BIID sufferers apire to. What casts suspicion on the term “sufferer” is the aporia at the heart of the question it begs: why would one aspire to suffering? Seibers writes, "It is not the fact of physical difference that matters, but the representation attached to difference – what makes the difference identifiable”(17). Siebers’ insistence on the liberatory aspects of seeing disability as a minority identity politic implies attaching a political meaning to disability, and reassigning a progressive signification to a once null signifier, the sign gaining its authority from its union with a now empowered signifier! Hallelujah!
What radically differentiates successful BIID wannabes from the disabled is the issue of body modification. And this has everything to do with how the “fact of physical difference” is subsumed by the “representation attached to difference” which shapes the BIID objective. The concept of “choice” inheres in the verb form, “to modify”; but the disabled had no choice in their state, and I would presume to say, never would have chosen to be handicapped. This is not to say they are unhappy, lacking in something, or are defective in some way, it simply assumes their lot was not a choice.
Now, I know there will be BIID folks who object to my equating amputation by choice with tatoos, piercings, and other such cultural manifestations, but the fact is, as in the case of every desire to modify one’s body, establishing a physical and psychological identity is at the core of painting one’s fingernails, piercing one's penis (there’s that rascally Prince Albert again), and amputating one’s arm. Disabled citizen’s don’t choose to be handicapped, but society chooses the way they are percieved, and these public perceptions, reinforced by cultural representations, profoundly shape the kinds of body modifications BIID folks seek.
Best – Randy Tessier
The Los Chickens B/W is, from left to right, Charlie Tysklind, Brophy Dale (see photo), Dave Cavender (the tall guy), Don Kuhli, and Guppy Boy. This shot was taken in front of the bar at Mr. Flood's Party.
The B/W shot of my son, Russell, (on bass) and the Ann Arbor Community High Big Jazz Band backing up Wynton Marsalis was taken at a rehearsal for an appearance at Hill Auditorium. I've also included some pics from his younger days. 
