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Friday, January 31, 2014

Syracuse University: Disability as Ways of Knowing,Part III

Last Fall Stephen Kuusisto and invited Adrienne Asch to speak at Syracuse University.  Many of Asch's friends knew she was terminally ill. We wanted to honor Asch for her many and important contributions to bioethics and disabilities scholarship. Sadly, Asch was unable to talk about her life and work at Syracuse. She was too ill to travel and died in November.  I will remember Asch for her early and ground breaking work on prenatal testing and selective abortion. With her death, bioethics lost an important scholar.

As part of Ach's proposed visit Kuusisto and I had suggested we have a round table discussion. The three of us would read from our respective work to be followed by a Charlie Rose style open discussion. It was with heavy hearts that Kuusisto, myself and others decided we should move forward with our plan. Hence on October 29 Kuusisto and I read from our work in honor of Asch.  The event was titled Disability as Ways of Knowing, Part III.

Below is a video of the one hour event. I hesitate to post an hour long video but am doing so because many people have been suggesting I post videos of myself speaking. The people have spoken and below is enough Bad Cripple to last an hour though it may seem like a lifetime.

Thursday, January 30, 2014

Naive in the Extreme

Last night I read a short essay by Maria Yang titled "People with overt disabilities: Are we more forgiving of their behavior". Link: Yang describes a flight she took in which a man with Down Syndrome was on the same plane and in the same row of seats. The man is described as child-like, naive, and socially inappropriate.  During the boarding process and flight people tolerate the presence of the man with Down Syndrome. His difference was obvious and Yang concluded people are kind. There are no significant insights in Yang's short essay. Yet I was annoyed by the tenor of Yang's essay. First, the man she described is a stereotype. The adult with Down Syndrome who has child-like enthusiasm for life. Second, I was discouraged by the following quote: "We judge ourselves by our intentions, but we judge others by their actions. For people with overt disabilities or deformities, we are more forgiving of their behaviors because we are more charitable about their intentions. Why do we not do the same for those people whose deformities or disabilities are not visible?"

I could not disagree with Yang more. First, she embraces a charity model of disability. This may or may not be the case but the charity has a central place in her essay. All passengers and airline employees were kind to the man in question. This is wonderful but a rarity. Thus I wonder would airline employees and passengers be as charitable if the person in question was not the stereotype for Down Syndrome. What if this man wanted to hug people instead of saying hi? What if this man spoke in a very loud voice? I do not think the response would have been charitable but rather hostile.  Second, I am taken aback by the line "we are more forgiving of  their behavior because we are more charitable about their intentions". Sorry but no. Charity is often absent when a disabled person is present. Moreover, the history of disability is littered with one nightmare after another usually accompanied by the belief it was in the best interests of people with a disability. Think Buck v. Bell and Willowbrook. Our social system remains hostile to the inclusion of all people with a disability. More to the point I have no interest in charity. We people with a disability do not want charity but rather equality.  We want and value the same things those within the mainstream do and thoughtlessly take for granted. We people with a disability are not a foil so typical people, those without cognitive and physical disabilities,  can feel good about themselves and be "charitable". 

No doubt Yang meant well. Yet based on this single short essay she appears to be hopelessly naive about disability based discrimination that abounds. I am willing to suggest Yang has likely never been on a plane and seated next to a man with Down Syndrome. Based on her experience she assumes much. The passenger and airline crew were polite to this young man and that must be the norm. It is not the norm. It is in fact the exception. When people with a disability, any disability, fly the odds of having a routine travel experience are remote. As I have noted many times, the airline industry has a deeply ingrained bias against people with a disabilities. Overwhelmingly negative experience are the norm. It is easy to find such stories in news papers and on line because they happen every day. People with a host of cognitive disabilities have been prevented from boarding because they represent a flight risk.  Expensive custom made wheelchairs are often broken. People with a host of physical disabilities are routinely humiliated. I for one have crawled off more than one airplane in frustration after an interminable wait for assistance. In recent years I have been asked "can't you walk a little bit".  When the reply is no stunned silence ensues.

I wonder about Yang. Why does she accepts a charity model of disability? Does she really think the trouble free experience the man with Down Syndrome she described is the norm?  At an abstract level I understand why Yang likes a charity model of disability. It feels good to give to the needy, poor, and disabled. It feels good to be kind to the less fortunate. Yang felt good about herself and willingness to be kind to the man with Down Syndrome. That was a mere few hours of her life.  And this is where I get frustrated. The "charitable" experience she described does reflect the reality of life with a disability as I know and experience it.  Thus when I cry foul as I am doing here others, typical able bodied others, often deem me bitter and angry.  This is neat little trick. In classifying people with a disability such as myself that expect to be treated equally and with respect as bitter or angry individualizes the perceived "problem". This obscures and undermines the issue--the violation of the civil rights of people with a disability. Rights protected by a myriad of laws and enforced by the Department of Justice.  If there is a problem it is that we as a society do not value the enforcement of these laws. Now that is something I hope Yang and others are willing to think about. To do so requires a leap in logic too many are unwilling to make.

Wednesday, January 29, 2014

Long Ago I Fell Out of my Wheelchair...

A long time ago I fell out of my wheelchair in New York City. This rarely happens but heck I will admit it was my fault. I was young and stupid. I was crossing the street, 14th and 5th Avenue near the New School, and it was rush hour. I had just attended a lecture and would like to state my mind was filled with important academic theories and ideas. If I stated that I would be lying. The fact is I saw a shapely young woman my age and was glancing her way as discreetly as humanly possible. I was oblivious to the fact my right front wheel was about to hit a pot hole.  I am clearly not James Bond material as before I knew it I pitched forward, my brief case and papers go flying, and I find myself on the street in the middle of one of the busiest intersections in the city.

I am screwed! Well, no. This is New York City and this is a classic New York City story. Before I can reach for my wheelchair I look up and see a mass of pedestrians circling me. In seconds I am surrounded by people in the middle of 14th street. I am not going to die. In fact I see people collecting the papers that spilled out of my brief case. A man in a business suit tells me relax, take your time getting back in your wheelchair. Others chime in too--don't worry take all the time you need. I adjust my wheelchair and body and realize with a start that not one car is honking its horn. In fact if anything it is strangely quiet for rush hour. Weird. I get back in my wheelchair with slight effort all the time being told by strangers not to worry. Many are urging me to relax. All offer support. I get upright and into my wheelchair, adjust my hips, and someone hands me my brief case. The circle of strangers that surround me all head to the sidewalk in unison. I go up the curb cut and start to think I should say thank you. Before I can utter the words all the strangers are gone. Cars have resumed jockeying for position and honking horns. I sit in puzzled. This was a cross between genuine human kindness and the Twilight Zone. Only in New York City.