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.