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Wednesday, April 18, 2012

Better off Dead Than Disabled

In the last week a few people have asked if I am going to comment on a day time TV show Dr. Phil. After my experience with Dr. OZ months ago I am gun shy to say the least about weighing in any topic discussed on day time TV. I do not get the allure of day time TV. The only time I would think of turning on the TV during the day would be to follow a breaking national news story or local weather alerts. I cannot imagine siting down in the middle of the day and watching a TV program. So with some trepidation I am going to make some general observations about Dr. Phil and how he recently advocated for the "mercy killing" of people with disabilities.  I will not provide the link to his show. It is simply too offensive. Dr. Phil had a mother, Annette Corriveau, on his show who wanted to euthanasia her children. Yes, she wanted the right to kill her children. Is that putting it too harshly? I think not. Who else was on the show? The lawyer  Geoffrey Fleiger who defended Jack Kevorkian. So much for balance.  What the show was all about was pulling on viewers heart strings. Corriveau's children have Sanfilippo Syndrome. It was not clear what type they have. It was not clear the level of their cognition. It was not clear whether they were in pain. It was not clear what their daily life is like. It was not clear whether they could see or hear. It was not clear how much they are able to communicate. Inconvenient facts such as these only get in the way of the gut wrenching emotion TV programs thrive on.

No hard questions were asked. No one who actually spends time with Corriveau's children were interviewed. No one asked what their daily lives are like. No one asked why they have not left the institution they reside in for over two decades. No one asked Corriveau how she determined her children are suffering--a hard to access fact when she seems them infrequently. Apparently simply visiting her children is too upsetting. Yet Corriveau does the have the time to go on the Dr. Phil show and be interviewed on Canadian TV with Robert Latimer, a man who was convicted of murdering his disabled daughter.  Corriveau is setting herself up to be the expert on when it is acceptable for a parent to kill their children. Worse yet, Canadians seem to be rewriting history as it pertains to Latimer. He is not identified as a convicted murder but as an expert on children and disability. What shocks me is the social support parents receive when they express a desire to kill their children with a disability. Oh, how horrible it must be to raise a special needs child. Oh, how you must suffer. Only these parents know what such a miserable existence parenting a child can entail. I am not exaggerating. When Dr. Phil asked for a show of hands as to who supports Corriveau virtually the entire audience raised their hand. I just hung my head.

I do not know if it is the weak economy, the health care reform debate, or that the divide between rich and poor is expanding daily but these are hard times for people with a disability and by extension anyone else that does not fit into society. I have never truly believed people thought I was better off dead as the disability rights slogan mockingly proclaims. That belief has been shattered in the last two years. I have no doubt people with a disability are perceived to be suffering and those people that have no experience with disability think we should be put out of our misery.  I am not being mellow dramatic. I was offered assisted suicide in an underhanded way in 2010. Next week a paper will be put on line in advance of publication detailing my experience. The point, here is we are well on our way down a slippery slope if the masses are listening and watching people like Dr. Phil and Dr. Oz. Killing people with a disability is not seen as inherently wrong but rather an act of compassion, mercy even.  Great for day time emotional tear jerking TV shows but way short of facts and devoid of reality. The fact is people with a disability lead rich and full lives. I am one of many.  But I am one of many at risk. And that thought keeps me up at night and fearful of accessing the health care system that is hostile to my existence.

Monday, April 16, 2012

TEDMED: Abysmal Transportation at a Great Conference

The above photograph of a Washington DC trolly bus was the bane of my existence at the TEDMED conference I attended. The conference itself was an amazing experience. It was nothing like the anthropology conferences I have been attending since I became a professional anthropologist. Anthropology conferences are bare bones. No swag, sub basic speaker set ups at mid line or cheap hotel/conference centers. Well, last week I learned how the other half lives. I have no idea how much money was poured into the TEDMED conference but it was substantial. And this I suppose reflects the significant sum of money people invest in attending. While I did not shell out anything to attend thanks to the Hastings Center that got me a scholarship, others forked over $5,000. What does this money buy a delegate? Access to the Kennedy Center, a social hub in the form of a huge tent--think circus sized tent, dinner at the Library of Congress, excellent food, meaning breakfast lunch and dinner, and an open bar in the evening. It was the open bar that shocked me. An open bar and anthropologists is a bad mix. Think stupor here!

While I could wax poetic about the facilities and speakers there was one glaring flaw--transportation in the form of buses from my hotel to events all over Washington DC was problematic at best. And here I am being far too polite. Transportation was a disgrace, totally unacceptable. Prior to attending the conference I inquired multiple times about accessible transportation. The first reply was typical. Of course we have accessible transportation. When I inquired as to what that accessible transportation entails I was informed "some buses" have wheelchair lifts. At any other conference I would have interpreted "some buses" to mean you are on your own. We have an accessible bus but have not seen it since the Nixon Administration. However, given the conference was a TEDMED event I had higher hopes and expectations. I will say this about the buses. I was able to get to every event. That is as far as my praise can go. By itself this is an indictment of just how bad bus service is in America for people with a disability.

What I was told before I left for Washington DC was correct. Some buses were accessible. Not many, but some. If each and every bus that had a lift operated and the driver knew how to use the lift  I would have experienced minor inconvenience. But as most people that use a wheelchair know just because a bus has a lift does not mean it works. I would estimate half the wheelchair lifts on "some buses" were not operational. This transformed my transportation experience from being a minor inconvenience to a major problem.

 What problems did I encounter? The usual excuses abounded: "the lift is broken", "the key is missing", "I don't know how to use it", "the tie downs are gone", "I don't know how to use the tie downs" etc. At any other conference or tour of the city this would be expected. But we are not talking about any other conference or city tour. Major funding goes into the TEDMED conference. It is a spectacular conference, speakers uniformly superb, polished even, and all other events were extremely accessible. The Kennedy Center was a delight, bathrooms abounded, staff helpful and professional.

By the end of the second day I realized two things. One, at least two buses and as many as six would pass me by before I could get on. Some accessible buses became a lonely singular bus. I lost a great deal of time simply waiting and watching other delegates get on and off bus after bus after bus. This did not seem to bother any delegate or employees. Second, the transportation supervisor lied to me and was willing to say anything to get me to stop complaining. After watching many buses pass me by I confronted her and told her each and every bus with a lift had to be tested before it was put in service; and be tested by the driver. She said of course we do that. The next bus arrived and the driver told me he had never used a lift a before and had no idea how to operate it. I quickly learned the transportation supervisor was worthless.  The actual drivers were the one's to know. In the end I was able to manage and did not miss any event. However, if I had trouble at a prestigious conference such as TEDMED what takes place at an ordinary conference? What happens to the average tourist with a disability who tries to use a trolly bus? These question make me think back to 2004 when my son and I tried to visit the new Air and Space Museum outside Dulles Airport. Just like I experienced at the TEDMED conference, the bus had a lift but it did not work. Eight years later it appears not much if anything has changed. Lip service is paid to accessible transportation. Try and use those pesky lifts and a new harsher reality emerges.