There’s a post over at The River of Jordan that I have been mulling over for a long time. “Jordan”is a little boy whose mom writes with discernment about how he is not the sum of his disabilities. This is of course very very important for those who are outside this thing called “the disability community”. By analogy no one is ever believed to be the sum of his or her bones, the outcome of his or her dental work (well, maybe that isn’t true in Hollywood?) but outside the world of pwds where the indeterminacy of bodies is understood those who have impairments are still conceived of as faulty algebraic equations. In the post I’ve linked to above, Jordan’s mother writes about the myriad and indeed relentless ways that doctors attempted to persuade her that her infant son would be impaired in hyper-theric ways–she was told that he would have so many maladies and incapacities that his life wouldn’t be worth a thing.
Jordan’s mom writes:
“I recently edited a book that prepares people for taking a nursing exam. The author stresses that giving “false hope” is unethical. Nurses shouldn’t say, “Everything will be okay” when it might not be. But is it also unethical to give only worst-case scenarios? That seems to be all doctors give these days. I understand they want to protect themselves from malpractice suits. But would it be so bad to give a little hope once in a while? Anyway, can hope ever be “false?””
Often it seems to me that those of us who reside (whatever that means?) within the disability community are better able to talk about both the poetry and the pragmatism of being alive than those who live in the constant expectation that normal health is sustainable or to be counted on.
Wheelchair Dancer writes about the ways that “universal design” is being marketed as an aesthetic idea to the baby boomers who presumably have enough retirement income to imagine that they won’t be disabled they’ll just be “aging in place”. This is the architectural co-efficient of the medical narratives that are described by Jordan’s mom–the expectation is that disability is (for lack of a better term)a “take away”–as if living in a body is some kind of board game in which the “d” word is like the “Go to Jail” card in the Monopoly game.
Why should we who have disabling conditions have to assert and re-assert the full value of living or say that beyond mere existence there’s artful splendor about our ordinary days and nights? This is a serious question and its not enough to say that we are talking back to the normates or taking on the social construction of normalcy or whatever one wants to call the matter. We are all too often forced to talk among ourselves because the “Go to Jail” card troubles the public’s nerves like smoke above a scene of violence–the “d” word is so deeply and psychologically devastating that its far worse than Hester’s scarlet letter. (One can avoid having to wear the scarlet letter by the force of her will; avoiding disability is simply a matter of luck or concurrent with genetic counseling.)
It is the word “disability” that forces pwds to talk among ourselves.
Dark Angelwrites about having an undiagnosed autism-spectrum disorder and the agonies of living publicly as someone who was often judged to be deviant (to use VictorTurner’s anthropological term). Now that he knows what he “has” he feels like telling people to “Stuff it.”
Disability is not an extrinsic social or cultural matter but despite the staggering numbers of pwds here in this country and around the world we are still encoded as people who reside outside the ritual circle of the village. Baby boomers would rather “age in place” than admit to having disabilities. The pediatric doctors would rather talk about the calamities of disabilities than the complex ways that human beings grow and adapt and live–yes, really live.
S.K.
Planet of the Blind 