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Thursday, May 12, 2011

Hardest Hit March: Part Two

I have read dozens of articles in British news papers today about he Hardest Hit March. Amazingly, the press is doing a damn good job covering the impact the march has had. Sure the focus is on the obstacles protesters had to overcome but I can overlook this given the focus is on civil rights.

One story however stood out as particularly impassioned. Jody McIntyre in the Guardian wrote "Disabled People Must Fight for a Different Society" and noted:

Today, thousands of us marched to demand that our voices are heard. But just like the thousands of students who took over the Millbank Tower last December, they will be ignored, because the government not only do not understand our struggle, they do not care. The demonstration was called "The Hardest Hit March", but I personally object to such defeatist language. Yes, disabled people will be among the hardest hit by these cuts, but they will also hit back the hardest. We are not asking for sympathy from the public or from the government, we are demanding our fundamental right to live free and independent lives.
This is not a struggle for disabled people, this is a struggle for every one of us.

Hit back indeed. Today I hope the British showed us what can happen when people with a disability forget about our differences and band together. I hope leaders of ADAPT and Not Dead Yet and the DREDF are paying close attention to what is going on in London. Imagine what a protest like the Hardest Hit March would look like in Washington DC? Now that is something to dream about. That is something we must make happen.

Hardest Hit March: BBC News

Below is a BBC report. Note that 9 billion pounds is being cut.

Hardest Hit March: Part One

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
Disability Alliance
Terrence Higgins Trust
Action Duchenne
Deafblind UK
Sue Ryder
Motor Neuron Disease Association
Radar the disability rights people
National Autistic Society
MS Society
Action for me
Child Poverty Action Group
Disability Wales
Inclusion London
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.

Wednesday, May 11, 2011

Stephen Hawking Wastes His Time with the NYT

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.