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Friday, August 30, 2013

Martin Luther King I Have a Dream: But I Despair

Over the last week I have read quite a bit about Martin Luther King's famous speech "I Have a Dream". I listen to this speech at least once a year when I feel a sense of hopelessness overcoming me. King was a brilliant orator and I find his words moving at a very deep level that touches my soul. In recent days I wanted to write something about King but words have failed me. Thus I was delighted to read a great post by the Disability Rights Bastard. See:  He wrote that he weeps : 

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: 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. 


Sari said...

I've been enjoying your blog. You raise many thought-provoking points. My disabilities are of the "invisible" kind and clearly not of the magnitude of many. Just want to say, on the issue of Down Syndrome, my grand-daughter has Down Syndrome. My daughter was only 20 when she gave birth and she didn't know beforehand. She is very pro-choice for each individual woman. Of course she loves her child, we all do and at 13 we are seeing a new maturity and enjoyment of life. I am just staggered, about every day, how rude, insensitive and just plain ignorant so many people are in their attitude to my daughter and grand-daughter.

william Peace said...

Sari, The rudeness your grand daughter encounters will only get worse. Sorry to be so pessimistic but society now expects all women to terminate pregnancies that involve Downs and many other conditions that would result in a disabled human being. This uncomfortable reality no one wants to discuss.

Middle Child said...

When we had our children there was no prenatal (culling) screening - you might be given an ultrasound if the doc was worried right near the end that the baby might be in trouble. Anyhow every dose of radiation you have that way is dangerous to the baby which is why i don't understand people just having them for their own interest - When i was in my early 20's (a long time ago_)our neighbor jean was at home with her last child who had Downs Syndrome. She said he gave her so much love and she never stopped smiling.Her ekder kids all left home and she loved having Phillip about. He was able to help out a bit and late in the afternoon he would sit out on the back verandah with his guitar and sing for us... She luckily had an arrangement for when she died and her eldest daughter became Phillip's mother. You couldn't not love him because he was so happy - because he was loved. He is still alive and his life has been worthwhile not that that matters - he had a right to that life and a right to love and for him it worked. Jean's husband wanted her to put Phillip into a children's home but she refused and the husband got the boot! Good on jean...Sometimes in country towns and I mean small towns the people become aware and look out for people who need it - not always but in this case.