Bill Peace has written an editorial over at his blog Bad Cripple that raises a number of questions about the relationship between disability and the American medical system.
http://badcripple.blogspot.com/2009/08/medical-industrial-complex-normalcy.html
The intersections between warfare and medicine are of course well known but often the repercussions of these industrialized systems, the human repercussions, are less understood. Bill’s post discusses among other things the ways in which both industrialized systems rely on fear to reinforce their hold over the public.
It is a matter of some interest and importance I think that people with disabilities are largely overlooked in the public discussions of health care reform. This is particularly distressing insofar as one in five Americans currently has a disability of some kind and many more will be joining the ranks in the next decade as the boomers continue to age. Certainly from a policy perspective alone our senators and representatives should be working overtime with the lights ablaze to adopt serious health care reform–and yet the lobbyists are deflecting the absolute seriousness of this matter with vintage fear mongering rhetoric which is straight out of the Cold War. One is reminded of the poet Allen Ginsberg’s litany from “Howl” that the Communists are coming and they’re going to steal your family automobile. Someone is going to steal your current health insurance. We must sacrifice our notion of government as a social contract in order to prevent alien hordes from stealing your magnificent and over priced HMO. Well I digress…
People with disabilities represent the nature of human physical life, a fact that in these United States frightens the bejesus out of the normativity industries which are of course promoting wrinkle creams and plastic surgery and medical ablutions of every kind. Some folks in the disability rights and advocacy communities resent the endless promise of medicine to find cures for disability, believing that a cure factored model of disability as a subjective “medicalized” defect reinforces the abjection of pwds. I too believe this though I’m pro-cure for many disabling conditions. Perhaps more than anything I continue to hold out hope that medicine as practiced in the U.S. will learn from disability studies just how limiting it is to conceive of patients as being merely defective healthy people. Such a position is in fact illusory and untenable insofar as all of life and nature resides in paradoxes. As Carl Jung once said: “Human reality is made up of a thousand vulgarities.” We are each destined to fall apart both physically and all too often emotionally. Medicine which cannot comprehend human suffering and admit that much of it is unsolvable is bankrupt both in spiritual and in financial terms. Very often “less cure” is the better road for a patient.
Another way that the current health care debate can be informed by people with disabilities has to do with the religious truth that we cannot understand a thing until we have experienced it inwardly. PWDs know more about the paradoxes and yes, the calamities, and yes, the ironic gifts of our human bodies than the galleries of lobbyists who champion business as usual.
When I was in Washington DC two weeks ago at an arts pow wow sponsored by the Kennedy Center and the National Endowment for the Arts the participants, most of whom had disabilities, were addressed by a representative from the Obama administration who discussed the President’s decision to sign the United Nations human rights charter for people with disabilities. This was well and good but I noticed that health care was scarcely mentioned and I remain convinced that the dialogue about reforming our health care system is skewed toward superfluous ideas about perfect bodies. If we continue to imagine health care in these terms we can be mislead into imagining that health is just another form of self-help commodity fetishism like wrinkle cream–hence its just a shopping choice and not a human right. Disability teaches us that there are indeed real bodies in the balance.
S.K.
Planet of the Blind 