I am having a good morning. The comments on my 500th post and by extension on Facebook have cheered me up. There are other people fighting the good fight. There are people who get how deadly ableism is, that is our ingrained bias against people with a disability. The issue for is why. Why do the vast majority of Americans have no clue what ableism mean? Why do people fail to equate disability rights with civil rights? Why are people resistant to go against the grain and question entrenched beliefs that make no sense? More specifically, why do health care professionals take such a dim view of life with a disability? In part, people with a disability are the symbolic representation of the limits of medical science. Health care professionals, public schools, and a host of other institutions do not know how to react when people with a disability thrive. We are not following our prescribed roles as tragic failures. Complicating matters further is fear--people with a disability are feared. Thus at a practical and symbolic level people with a disability call into question the utility of science and technology. How does this play out in the real world? In the case of spinal cord injury people without a disability gush over impractical and essentially worthless technology such as the exoskeleton. Much time is wasted encouraging newly paralyzed men and women to learn how to "walk". This is problematic. Symbolically, the use of a exoskeleton sends the message walking is good using a wheelchair is bad. Instead of pushing a newly paralyzed person to walk and investigate stem cell research I would argue figuring out how to manage one's bladder and bowels is far more important.
Culturally, technology reigns supreme and the hard work it takes for a person with a disability to navigate the world is not valued. Daniel Callahan maintains that we have created a "beast". That is technology has replaced care; what was once the bedrock of the medical sciences. This directly affects people with a disability because we are perceived as failures. Technology we revere did not cure us. This is a personal tragedy. Note the word personal. The idea disability is a uniquely individual experience permits and empowers ableism. This cultural assumption enables a host of social violations to occur because people with a disability are not a unique and distinct minority group. People with a disability are losers. Worse yet, if people with a disability really tried hard enough, think Christopher Reeve, they would spend their time overcoming their disability. This thought crossed my mind when I was reading about Marshal Sahlins, an eminent anthropologist, who resigned from the National Academy of Science in protest over the NAS election of Napoleon Chagnon. This has generated a heated debate within anthropology. I reread an interview with Sahlins in Dissent and was struck by the following quote:
The premise of American overseas aggression, according to Donald Rumsfeld and others, is something like the line in the movie Full Metal Jacket: “inside every gook there is an American trying to get out.” All we have to do to liberate this innately freedom-loving, self-interested, democracy-needing, capitalist-in-waiting is to rid him of the oppressive, evil-minded regime holding him down—by force if necessary. That is, Chagnon’s view of self-aggrandizing human nature is the sociobiological equivalent of the neocon premise of the virtues of American imperialism: making the world safe for self-interest. It is the same native Western ideology of the innate character of mankind. A huge ethnocentric and egocentric philosophy of human nature underlies the double imperialism of our sociobiological science and our global militarism.
It does not require a stretch of the imagination to replace "inside every gook" with "inside every disabled person" there is an able bodied American trying to get out. I would argue we need to ask an entirely different set of questions. This is something Jackie Leech Scully has proposed in her book Disability Bioethics. Deaf for almost thirty years, Scully wrote that no person had ever asked her "what is it like to hear as you do"" Instead, people have asked me "How much can you hear"? Similarly, people have asked me "How long have you been paralyzed"? instead of "What does it feel like to be paralyzed"? These questions are profoundly different. One is asking about the experience of deafness or paralysis the other sets one up to fail; the standard or norm is created by the questioner and assumes a terrible flaw exists. The impairment is the start and end of the narrative. The disability is firmly tied to an individual. In pushing people to ask a totally different set of questions it is my hope people will come to a fundamental conclusion--disability is normal, it is an integral part of the life cycle and human history. What was once a singularly uniques story becomes a social problem that deserves careful consideration.
I'm glad you're having a good day and hope that continues. I am certain that your voice is like the proverbial stone in the placid lake from which ripples keep moving outward.
ReplyDeleteOn that note, you've reminded me that I once wrote an essay that appeared in an anthology about an experience I had with my daughter who has uncontrolled seizures and profound developmental disabilities. I was on a routine visit with preeminent geneticist at UCLA -- a very intellectual, learned man whom I had often enjoyed sparring with about literature, etc. This visit, though, we was surrounded by a six-pack of students, residents, etc. and when he walked into the room, he turned to them and threw his hand out, simultaneously stating to this students, "This is the disaster of a life with uncontrolled seizures." Right in front of my daughter, in my presence, he said this to his students. I've never forgotten it.
There is another set of ableism that goes even deeper than the bias against the "obvious disabled" and that is the bias against the "invisibly disabled". I am a member of the latter. My disability is not always obvious. There are days at a time where I don't need my canes or a chair. Where the only medical device I have on is 10 sets of finger splints that most people think are jewelry. It's those days that I get a dirty look from people who see the handicap placard in my car. I get the look from the able bodied and even sometimes the fellow disabled. I find it very sad. So many people are programmed to think that if you look fine, then nothing can be wrong with you, never mind that you could be disabled.
ReplyDeleteWhat people don't realize is that in my instance, I have a folded up cane in my purse and sometimes I get out of my car and don't need it - then by the time I'm done in the store/office/whatever - I can barely walk, even with it.
I think people in general need to be educated about disabilities and the effect that others can have on our daily well-being. It takes a long hard toll on a human being when they are knocked down each day by seemingly innocent questions like "what's wrong with you?" "why can't you....?" "what can't you do?" "your life must be hard" and other stupid commentary.
Thanks for bringing this subject to light - and may you have many more good days!
Sometimes people seemed afraid of my husband - you could have knocked him over with a flick of your fingers, but to witness shop assistants seem to be afraid to take money for goods he had bought out of his shirt pocket was at times funny but other times it made Don sad. He got to know which shops were okay with him because sometimes he would get really dizzy and the shopkeepers got to know that he sometimes needed the chair tilted back. In a country town it was easier I feel - Rural people might be a but gruff at times but they are a practical bunch... I still hold in my mind's eye the faces of those who were kind and decent to Don, people who's names I will never know but I can picture them. Luckily the others seem to be fading as they deserve to.
ReplyDeleteYou are right care is getting much worse and people seem hynbotised by technology and the cure.
Elizabeth, Stories such as the one you related are disheartening. You reminded me of grand rounds when I was on the neurological ward with 16 other sick kids at Columbia Babies Hospital circa 1970 something. Some physicians would present my case and and simply launch into a clinical description. Dehumanizing seems apt.
ReplyDeleteFamily Values, You are spot on r.e. invisible disabilities. This is why I never say anything to people who park in handicap parking for instance. In fact I would think the stigma associated with a disability that is not apparent is worse than what I encounter.
Middle Child, Ah, fear of people with a disability is rampant. I cannot tell you how many times I have heard "Watch out for the wheelchair". Sometimes if the mood strikes and I am with my son I will loudly state "Watch out for the bipedal person". People look at me like I am nuts but once in a while I see the light bulb go off in someone's head.
“Inside every cripple a non disabled person is trying to get out”—Absolutely true, William. How ironic that those who are physically impaired are the ones who are stronger than we are. Sometimes, it's not the matter of the sizes, it is the matter of great willingness to cope up with everything.
ReplyDelete#Erminia@ParmeleLawFirm.com