when I re-read Dr. King’s speech. In particular, I weep reading passage:
“One hundred years later, the life of the Negro is still sadly crippled by the manacles of segregation and the chains of discrimination. One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languishing in the corners of American society and finds himself an exile in his own land. So we have come here today to dramatize an appalling condition.”
I weep because when I replace the word ‘disabled’ for ‘negro’ things are truly looking sad. Not just in the United States but in all the Western countries where I know disabled people – not to mention third world countries. In the intervening 50 years we truly have not come far when it comes to segregation, discrimination, poverty and misery for disabled people.
As a group we have poorer education than average, we have far poorer health (on top of our disability), we earn less money, we have a poorer social life and most importantly, we have much less access to things in our societies that others take for granted. Services are off limits for many disabled people. Stores, cinemas, museums, police stations, yes even hospitals are often off limits for those of us with different kinds of disabilities.
This eloquently highlights why at times I am overwhelmed with despair over the lives of people with disabilities. Of course no one will ever put a burning cross on my lawn and I do not expect to be assaulted simply because I use a wheelchair. But disability based discrimination is rampant and takes many forms. Discrimination can be blatant; for instance, a restaurant employee can tell me "no wheelchairs" or a stranger can approach me and tell me they would rather be dead than paralyzed. Subtle forms of discrimination I have experienced assume that I am physically incapable of performing mundane tasks or that I am both physically and cognitively disabled. While I am energized by my first week of class at Syracuse University, like the Disability Rights Bastard I am not optimistic. I am not optimistic for a particular reason: people with a disability are hopelessly splintered into competing and antagonistic groups. People who are blind I am told are divided between cain and guide dog users. When I write about the social implications of adaptive skiing or biking some in disability studies scoff at me and tell me I have a privileged body. People who are deaf refer to wheelchair users as the chrome police only interested in ramps and wheelchairs. This must change but I do not see this happening any time soon. In line with this thinking Disability Rights Bastard wrote:
For a long time I have wished that we could gather enough people to engage in a march on our respective capitals. That we could be enough people to form a crip pride parade and proudly display our natural diversity. Where the wheelchair users held signs about “standing up for your rights” where the blind were wearing t-shirts saying “Blind is beautiful” where the folks with learning disabilities shouted: “I know things that you will never learn” to the tune of the deaf singing songs of their freedom. However, I don’t have high hopes for any of that to happen. We are moving towards a world where it is survival of the fittest and where money talks. If anything we are heading for a cut-throat world where the so-called weak are going to be culled and there will be no room for individual differences.
The weak are already being culled. In fact the weak, the deformed, the crippled, the different are not even being born. My good friend and colleague Stephen Kuusisto wrote at Planet of the Blind about De Facto Eugenics. See: http://www.planet-of-the-blind.com/2013/08/de-facto-eugenics.html Kuusisto prefaced his comments with a long passage from Andrew Solomon's critically acclaimed book Not Far From the Tree. Much lip service is paid to the idea of choice. The myth in American culture is that we are free and independent thinkers. We are in charge of our own destiny. We are autonomous beings. This myth plays into much of what bioethicists write about. We value concepts such advance directives, informed consent, autonomy, and personhood. This is great in theory. But as Kuusisto points out a naivety exists. When a woman is given a prenatal diagnosis for Down Syndrome is she really given a choice? Theoretically a pregnant woman has the right to end or continue her pregnancy. Yet Kuusisto correctly observes "prescriptive abortion is the norm". Last I checked nationally 93% of positive prenatal tests for Down Syndrome result in a terminated pregnancy. What if a woman chooses to bring a pregnancy to term? She is considered a religious fanatic or a contrarian that selfishly brings a person into existence who is not capable of making an economic contribution to society. Welcome to a brave new world. Kuusisto chilled me to the bone when he wrote "there is no need for Eugenic legislation in our current health care system" and that "radical decisions have already been made". Theses radical decisions are couched in dense academic prose by utilitarian philosophers such as Peter Singer and Julian Savulescu. Bioethics as a scholarly field seems to be enamored with utilitarian philosophers. I find this deeply troubling. So next October when I go to the American Society of Bioethics and Humanities meetings I will get to see and hear Julian Savulesco give a key note talk reserved for widely respected thinkers in the field. Yes, I will also hear Rosemarie Garland Thomsen give a talk as well but she is clearly on the B team in my estimation. The mere fact Savulescu was asked to speak and given the biggest platform humanly possible troubles me because as Kuusisto put it "radical decisions have already been made". Those radical decisions I know do not involve respect for my crippled body. Those decisions already made are a threat to me and all people with a disability.
