I was one of several disability rights activists that spoke yesterday before the Massachusetts legislature's Joint Committee on Public Health in opposition to H 1998, which would legalize assisted suicide in the state. The group called Second Thoughts was instrumental last year in the defeat of the Massachusetts assisted suicide referendum, Question 2. John Kelly and others deserve our thanks for their hard work and efforts. I was delighted to be among those that are opposed to assisted suicide legislation but I am concerned we are fighting an uphill battle. In fact it appeared to me the audience was dominated by proponents of assisted suicide. This is disheartening. Equally problematic was the fact very few people with a disability were present (by disability I mean people with an obvious disability such as wheelchair users). In a large room filled to capacity of well over 100 people I would estimate there were less than ten people present that used a wheelchair. This is a real problem symbolically and practically because it reveals how disenfranchised we people with a disability are.
Merely getting to the State House was difficult if not impossible for some people with a disability. I hate to admit this but my testimony was terrible. I am a good public speaker but failed miserably to impress. I have lots of excuses or to be kind to myself legitimate reasons for why I spoke so poorly. The trip to Boston was going to be brief. I left on Monday and returned home Tuesday. I have not been to Boston in many years. I now remember why I do not go to Boston--it is a very difficult city to navigate for a wheelchair user such as myself. My visit was especially difficult because it had snowed in Boston a few days before I arrived and the streets were clogged with snow. Finding curb cuts and a place to cross the street was a challenge. More than once I had to take a much longer route to get to where I was going. This I expected. What I did not expect was the ADA nightmare that the Omni Parker House presented. I chose this hotel for one reason--it was two block from the State House. The Parker House was without question not accessible. Valet parking was at the center of a small side street. There was no curb curt. The valet entrance to the hotel was not accessible. I exited my car and had no choice but to navigate up the street in the road. This was not less than ideal it and was to a degree dangerous. The main entrance was unacceptable. The automatic doors were extremely narrow and it is unlikely a person using a power wheelchair could get in the building. Regardless, the lobby was gorgeous and hotel staff exceedingly polite and efficient.
I can overlook the awkward entrance and valet parking. This is uncommon but I am staying one night and the location is ideal. I tell myself forget it--a minor inconvenience. I get to my room, throw my bags down and go out eat a lunch that was delicious. I go back to my room and realize I have a major problem. The bed is high--really high. Not a chance I can make the transfer. The bed is as high as the dresser in the room.
This is an increasingly common problem. The fashion trend in the hotel industry is for beds to be high. These beds look good and I am sure housekeepers love them because it is involves less bending over when sheets are changed. I call the front desk to complain and they connect me to housekeeping and two very polite men show up. The established solution I am told is to remove the box spring. They do this and I can now make a transfer. I now know why beds have a box spring. I spent a miserably uncomfortable night on a mattress that was a lumpy mess. I also woke with a small but very red skin mark. I am not happy. I pack up my things in the morning, check my bag, and head off the State House--an impressive building indeed.
The State House is indeed two blocks away but if you use a wheelchair the State House is actually four blocks away. Four block that are uphill. I arrive early am relieved to find an accessible restroom. The room where the hearing is being held is easy to find. Wheelchair access in the room leaves much to be desire. Essentially a wheelchair user is relegated to the aisles. The assumption of coure is that a large number of people that use a wheelchair will never appear. Once settled in the room, I wait over two hours to give testimony. The room a veritable steam bath and I am spent by the time I speak. I struggle in the heat and felt sick. I did my best under the circumstance but my best was not very good.
I provide this personal narrative to highlight an essential problem: people with a disability are grossly under represented for symbolic reasons--I accept this as a given. In addition, 23 years post ADA real daunting logistical barriers are common place. These barriers are so overwhelming there is no doubt in my mind some people with a disability could not attend the hearing because it was physically impossible to get to the State House. I had trouble too but I am well aware I enjoy a position of privilege. I had the support of Not Dead Yet and could stay in an expensive though not very accessible hotel. I had my own car. I could afford to go out to eat and had a nice dinner. I was not dependent upon mass transportation or an ineffective para-transit system. I do not use a wide or large power wheelchair. I do not have autism so the large overheated room with far too much stimuli did not affect me as it did others. This list could become very long. The point is we people with a disability were grossly under represented for reasons I find objectionable. Physical barriers are simply unacceptable.
Two final points. First, the drive home was twice as long as usual. I drove through a snow storm and the roads were slick with snow and ice. A three hour drive became six hours. Second I have mixed feelings about the hearing. Three minute presentation are useless. Testimony is essentially a brief summary published work or opinion. I am glad I attended the hearing and consider my testimony and the testimony of others opposed to assisted suicide legislation critically important. Yet on my snowy drive home I could not help but worry. Will a staffer collect the testimony into two neat piles: for assisted suicide and opposed to assisted suicide. Will this staffer, who might not be familiar with the issue, write a one page summary of the testimony. Will politicians delve deeply into the materials provided which would take days to read through. I doubt it. I am skeptical and might be wrong. This is not a constructive observation because I have no viable solution or alternative to offer. For better or worse, I witnessed and participated in the democratic process--a process too few people with a disability have the power to attend.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Wednesday, December 18, 2013
I Testified in Boston: A Problematic Trip from Start to Finish
Posted by william Peace at 5:42 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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Honest and incisive post as always, Bill! Thank you for your chronicle of a visit to Boston, your pictures make it all real. The oppression you experienced is part of the same oppressive social fabric that supports people dying to avoid living even a short while like us.
And I think, from your own individual perspective and the potential legislative impact of your individual testimony, I think feeling a bit desolate is natural and even correct. But the impact and importance of your visit and testimony comes from another area, from precisely that which we went to the Statehouse to proclaim: that we are all interdependent, that we recognize each other as fully human and are willing to fight for each other. So your coming, and Cathy Ludlum and Stephen Mendelsohn and Denise Karuth and everyone who had to travel a long way, you strengthen us all and bolster our ranks when so many of us could not get there – again based on the same oppressive social fabric. That oppression renders sidewalks as afterthoughts, something to be shoveled when a prison crew becomes available. The transportation people just want to make sure the roads are clear, and bring hot tea to the cripples next week. So it's because your presence mattered so much to US (ME!) that you really get to feel proud! And we will be using excerpts and tweeting and linking to your testimony over the next few months as we continue to fight this battle in the Statehouse. Your testimony is now a document that we can all refer to come because you were there. And as for your presentation, it was heroic under the circumstances, and words stand on their own, you know :-). It will be the testimony that keeps on testifying :-)
I totally understand your comments about the difficulty gathering people with disabilities together at hearings, rallies, etc. Living down by the cape I have an hour drive to Boston which isn't much but parking is always a nightmare. The snow yesterday totally prevented my attendance. With all the internet social media, Skype, etc. there should be a way to accomplish more activism in cyberspace than in a room full of perhaps, disinterested people.
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