I am very excited and proud. The disability rights movement in Britain has scored a huge victory. Every major British paper is reporting about the Hardest Hit march that took place in London. As the Brits put it: "Disabled people, those with long-term conditions and their families are being hit hard by cuts to the benefits and services they need to live their lives. The Hardest Hit campaign, organised jointly by the Disability Benefits Consortium and the UK Disabled People�s Council, brings together individuals and organisations to send a clear message to the Government: stop these cuts."
What struck me aside from powerful visuals of the march in London was the same thing that has undermined the disability rights movement in the USA: the inability to form a powerful political coalition. If the British can do it and hold a massive march in London then we in the USA can do the same.
Look at the diversity of groups participating:
Leonard Cheshire Disability
Sense for deafblind people
Arthritis CAre Empowering peope with Arthritis
Parkinson's UK Changing Attitudes
Mind For Better Health Care
Rethink
Disability Alliance
Terrence Higgins Trust
Action Duchenne
Deafblind UK
Kids
Sue Ryder
Mencap
Motor Neuron Disease Association
Radar the disability rights people
National Autistic Society
Scope
MS Society
Action for me
Child Poverty Action Group
LASA
Disability Wales
Inclusion London
PCS
Livability
Macular Disease Society
Dementia UK
Tourettes Action
Transport for All
Stroke Association
Ambitious about Autism
This list is not complete. The point is disparate disability groups came together to say no. No we do not accept the proposed budget cuts. We are human being and out lives have meaning. We are important. The draconian budgets will compromise lives.
What really stunned me is the number of people that assembled and marched. Many had never protested before. All had a great deal of difficulty getting to London. Simply put the mass transportation system that works wonderfully for those that can walk is a disaster for people with disabilities. Thus the fact that about 8,000 people showed up to march is astounding. The visuals are nothing short of awesome. I was moved to tears and encouraged about the power of ordinary people. I thought of the wonderful capacity of people to adapt to disability and society's effort to exclude. This dichotomy is so frustrating. We people with a disability have so much to give to the world and yet we are devalued and needless obstacles put in out way. Yet we overcome--over come social bias that is not our disability. There is nothing to overcome when it comes to disability itself. It is society that disables us not our bodies.
Maybe I am nuts but a large part of me is deeply moved by disability. I do not see flaws but a human being that adapts in the strictest sense of the term. I think of my adviser at Columbia, Robert Murphy who wrote the Body Silent and published and accomplished more after he became a quadriplegic. I think of how he used to drive to work with Morton Fried (a famous anthropologist) whose eye sight was terrible due to diabetes. Fried would drive even though he could not see. Murphy would direct him even though he could not move. To me this is human adaptability at its best. And that is what I saw in the Hardest Hit March--the very best humanity has to offer the world. Hopefully the British Government saw what I did.
Pictures and videos to follow.
Stephen Hawking Wastes His Time with the NYT
Wednesday, May 11, 2011
Stephen Hawking is the most well-known physicist in the world. He also has ALS or Lou Gehrig's disease. I cannot understand Hawking's work. I tried to read his best selling book, A Brief History of Time: From Big Bang to Black Holes. I did not get through or understand the first chapter. How an estimated 10 million other people who bought the book, and I presume understood it, is a mystery to me. For some time now, Hawking has been totally paralyzed. Like others with ALS and those with motor neuron disease he communicates via a computer. Communication is slow and labor intensive. Hawking gives few interviews for this reason. I think Hawking is wise for the NYT interview published recently was dreadful. Apparently Hawking is "one of the longest living survivors of ALS, and perhaps the most inspirational". I should have stopped reading here as the interview just got worse as it progressed. The interview was different. It was "a kind of interview". The interviewer sent Hawking's daughter a list of ten questions before the interviewer and Hawking met. At the interview Hawking played his answers to the interviewer. Given how Hawking communicates this seems logical. Rather than see the logic in this means of adaptive communication the interviewer noted "despite the limitations, it was Dr. Hawking who wanted to do the interview in person rather than by email". How dehumanizing. How rude. No wonder Hawking does not give interviews. He is too busy and too famous to waste his time answering stupid questions.
The interview itself was based on a lecture Hawking gave at Arizona State University entitled "My Brief History". Hawking rarely comments about his disability and I suppose that is what made his lecture and this interview of interest. He did mention his disability--he had no choice really. One question stunned me. The interviewer asked "I don't mean to ask this disrespectfully, but there are some experts on ALS who insist that you can't possibly suffer from the condition. They say you've done far too well, in their opinion. How do you respond to this kind of speculation?" This question is not only rude but point blank disrespectful. What is he supposed to say, sorry I did not die in the expected time frame for others with ALS. How about I am not suffering I have a medical condition. Or how about not asking a question based on baseless speculation. I will give Hawking credit though his reply was polite. I doubt I would have been nearly as nice. He noted in part: "I don�t have much positive to say about motor neuron disease. But it taught me not to pity myself, because others were worse off and to get on with what I still could do. I�m happier now than before I developed the condition. I am lucky to be working in theoretical physics, one of the few areas in which disability is not a serious handicap".
The second question asked was simply patronizing: "Given all you've experienced, what words would you offer to someone who has been diagnosed with a serious illness, perhaps ALS." Sure let's reduce the world's best physicist to his disease, you know the one he "suffers" from. Again, Hawking was polite. He answered: "My advice to other disabled people would be, concentrate on things your disability doesn�t prevent you doing well, and don�t regret the things it interferes with. Don�t be disabled in spirit, as well as physically."
The remaining questions concerned his work and were entirely appropriate. The final question was spontaneous--asked when they met. The interviewer asked: I don't want to tire you out, especially if doing answers is so difficult. But I'm wondering: The speech you gave the other night here in Tempe, My Brief History, was very personal. Were you trying to make a statement on the record so that people would know who you are? The answer "after five minutes I hope my experience will help other people". Does the interviewer really need to let readers know it took five minutes to provide a single sentence answer. No, it was done to prompt an emotional reaction--pity.
This sort of interview is so frustrating to me. What an opportunity was lost. I can think of many questions to ask Hawking who strikes me as a private person. To the best of my knowledge he rarely if ever answers questions about his disability. Now I know why. Like any other human he does not want to be pigeon holed according to a preconceived notion or type. He is not an inspiration to me or any other person with a disability. He does not advocate for disability rights as far as I know. Not every person with a disability wants to do this. His passion is physics. He is a physicist. Hence I admire Hawking's work not the man. His disability is not relevant in any way. If I had a hero it would be a person like Ed Roberts who advanced disability rights. Sadly, no one outside of the disability community even knows who Roberts was. Now this is a problem worth addressing instead of asking inane questions directed at a world famous physicist.
The interview itself was based on a lecture Hawking gave at Arizona State University entitled "My Brief History". Hawking rarely comments about his disability and I suppose that is what made his lecture and this interview of interest. He did mention his disability--he had no choice really. One question stunned me. The interviewer asked "I don't mean to ask this disrespectfully, but there are some experts on ALS who insist that you can't possibly suffer from the condition. They say you've done far too well, in their opinion. How do you respond to this kind of speculation?" This question is not only rude but point blank disrespectful. What is he supposed to say, sorry I did not die in the expected time frame for others with ALS. How about I am not suffering I have a medical condition. Or how about not asking a question based on baseless speculation. I will give Hawking credit though his reply was polite. I doubt I would have been nearly as nice. He noted in part: "I don�t have much positive to say about motor neuron disease. But it taught me not to pity myself, because others were worse off and to get on with what I still could do. I�m happier now than before I developed the condition. I am lucky to be working in theoretical physics, one of the few areas in which disability is not a serious handicap".
The second question asked was simply patronizing: "Given all you've experienced, what words would you offer to someone who has been diagnosed with a serious illness, perhaps ALS." Sure let's reduce the world's best physicist to his disease, you know the one he "suffers" from. Again, Hawking was polite. He answered: "My advice to other disabled people would be, concentrate on things your disability doesn�t prevent you doing well, and don�t regret the things it interferes with. Don�t be disabled in spirit, as well as physically."
The remaining questions concerned his work and were entirely appropriate. The final question was spontaneous--asked when they met. The interviewer asked: I don't want to tire you out, especially if doing answers is so difficult. But I'm wondering: The speech you gave the other night here in Tempe, My Brief History, was very personal. Were you trying to make a statement on the record so that people would know who you are? The answer "after five minutes I hope my experience will help other people". Does the interviewer really need to let readers know it took five minutes to provide a single sentence answer. No, it was done to prompt an emotional reaction--pity.
This sort of interview is so frustrating to me. What an opportunity was lost. I can think of many questions to ask Hawking who strikes me as a private person. To the best of my knowledge he rarely if ever answers questions about his disability. Now I know why. Like any other human he does not want to be pigeon holed according to a preconceived notion or type. He is not an inspiration to me or any other person with a disability. He does not advocate for disability rights as far as I know. Not every person with a disability wants to do this. His passion is physics. He is a physicist. Hence I admire Hawking's work not the man. His disability is not relevant in any way. If I had a hero it would be a person like Ed Roberts who advanced disability rights. Sadly, no one outside of the disability community even knows who Roberts was. Now this is a problem worth addressing instead of asking inane questions directed at a world famous physicist.
Civil Rights American Style
Thursday, May 5, 2011
It has been difficult to watch the news since last Sunday night when President Obama announced Osma bin Laden was killed. The media frenzy has been intense. CNN must be thrilled; it is a classic example of media over saturation in the extreme. I am disgusted by the entire discussion. I understand but found the so called spontaneous celebrations disheartening. I was left with little doubt why most people in the Middle East hate the United States. What do they know of us? Armed soldiers and bombs that reign down death with regularity. What has struck me about the media is the endless news loop that we Americans are fighting for freedom. This has me thinking about the meaning of freedom as we know it. Americans have been fighting for the concept of freedom for over two hundred years. We have had good wars, World War II, bad wars, Vietnam War, police actions, Korean War, and now we have the endless war, the war on terrorism. It struck me last night as I watched yet another story about the death of Osma bin Laden that fighting for freedom has become a ritual. If we Americans are not fighting for something, exposing an injustice, or celebrating our freedom we are at a loss for words. We have been so busy fighting we have forgotten what exactly it is we are fighting for. It feels to me we are fighting to fight. Worse yet, we no longer have a way of measuring our supposed success or failure. Was killing Osama bin Laden good or bad for the war on terrorism? Check in at 11PM for the latest poll results.Is it not possible to think for ourselves? Do we really need a poll to tell us how to feel?
What does the above have to do with disability? If we value freedom above all else, civil liberties, what we now call civil rights comes in a close second place. we are all taught racism is bad, very bad. This is a good lesson many fail to learn. Racism is alive and well in spite of the fact we elected a black man president. In much the same way, just because we passed the ADA 20 years ago bias and discrimination did not suddenly end. This point was made forcefully by John Hockeberry. I recently attended a lecture he gave at Columbia University entitled "A Law is Just the Beginning: 20 Years of Americans with Disabilities Act". As usual, Hockenberry was an engaging and entertaining speaker. He has the rare ability to make one laugh and think at the same time. As Hockenberry talked I realized what a jerk I was when the ADA was passed. I really thought the country was going to be revolutionized. I honestly swallowed the rhetoric hook line and sinker. What a rube! I am no more equal today than I was 20 years ago. Architectural barriers abound. Social oppression though no longer blatant is still present in an ever so polite socially sanitized form (see inaccessible taxis for the future I posted about). These thoughts came to me as I was inspired to reread Hockenbery's memoir Moving Violations. Hockenberry's book is outstanding. I loved it when I first read it in 1995 and it has withstood the test of time--my time that is. Hockenberry's work still resonates deeply within in me. His experience reflects my experience. We were both paralyzed in our late teens, came of age before the ADA, and felt great self imposed pressure to excel. In terms of the present discussion, one passage in his book jumped out last night as CNN droned on.
What we call civil rights in America is people jumping through hoops for their freedom, then having their scores tallied like figure skaters in the Olympics. Uppity niggers score low, so do illegal immigrants, and welfare mothers and crips who ask too loudly why there is no ramp into the theater. "We fought for it, so it's only fair that you should have to". It is America's real declaration of independence that poisons and isolates Jews, Asians, and whites from each other. It is less about race today than it is about this brutal free-for-all of who gets what, who deserves more, who's being fair, who's taking advantage". pp. 351.
Wow, does this reflect my experience in the last decade. No one really cares about access or civil rights for people with a disability but rather does the school, work place, or bus conform to a poorly written law no one except a lawyer reads. The concept, the idea of freedom and civil rights are not even worthy of discussion. This makes me mourn for a time before the ADA existed though I do not want to relive those days. Prior to the ADA I knew who was my friend and who was a foe. Today, I have no idea. The person that slaps me on the back and gives me a big smile hello could be the same person that bitterly complains about the money "wasted on special needs" kids at school board meetings. I wish I had a solution to the vexing problems I have risen. Indeed I am ready to throw up my hands and say enough, I do not give a damn! Of course, I cannot do that. It is just not possible. I am too much of a hard ass to give the bigots of the world the satisfaction who ever they may be.
What does the above have to do with disability? If we value freedom above all else, civil liberties, what we now call civil rights comes in a close second place. we are all taught racism is bad, very bad. This is a good lesson many fail to learn. Racism is alive and well in spite of the fact we elected a black man president. In much the same way, just because we passed the ADA 20 years ago bias and discrimination did not suddenly end. This point was made forcefully by John Hockeberry. I recently attended a lecture he gave at Columbia University entitled "A Law is Just the Beginning: 20 Years of Americans with Disabilities Act". As usual, Hockenberry was an engaging and entertaining speaker. He has the rare ability to make one laugh and think at the same time. As Hockenberry talked I realized what a jerk I was when the ADA was passed. I really thought the country was going to be revolutionized. I honestly swallowed the rhetoric hook line and sinker. What a rube! I am no more equal today than I was 20 years ago. Architectural barriers abound. Social oppression though no longer blatant is still present in an ever so polite socially sanitized form (see inaccessible taxis for the future I posted about). These thoughts came to me as I was inspired to reread Hockenbery's memoir Moving Violations. Hockenberry's book is outstanding. I loved it when I first read it in 1995 and it has withstood the test of time--my time that is. Hockenberry's work still resonates deeply within in me. His experience reflects my experience. We were both paralyzed in our late teens, came of age before the ADA, and felt great self imposed pressure to excel. In terms of the present discussion, one passage in his book jumped out last night as CNN droned on.
What we call civil rights in America is people jumping through hoops for their freedom, then having their scores tallied like figure skaters in the Olympics. Uppity niggers score low, so do illegal immigrants, and welfare mothers and crips who ask too loudly why there is no ramp into the theater. "We fought for it, so it's only fair that you should have to". It is America's real declaration of independence that poisons and isolates Jews, Asians, and whites from each other. It is less about race today than it is about this brutal free-for-all of who gets what, who deserves more, who's being fair, who's taking advantage". pp. 351.
Wow, does this reflect my experience in the last decade. No one really cares about access or civil rights for people with a disability but rather does the school, work place, or bus conform to a poorly written law no one except a lawyer reads. The concept, the idea of freedom and civil rights are not even worthy of discussion. This makes me mourn for a time before the ADA existed though I do not want to relive those days. Prior to the ADA I knew who was my friend and who was a foe. Today, I have no idea. The person that slaps me on the back and gives me a big smile hello could be the same person that bitterly complains about the money "wasted on special needs" kids at school board meetings. I wish I had a solution to the vexing problems I have risen. Indeed I am ready to throw up my hands and say enough, I do not give a damn! Of course, I cannot do that. It is just not possible. I am too much of a hard ass to give the bigots of the world the satisfaction who ever they may be.
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