Well the weather is finally warm and the ladies are out in their summer finest. Makes my male heart soar with glee. I saw many lovely women today as I was out and about. I guess I will never grow up--seeing a beautiful woman makes me happy. Gosh, men (me?) are so easy to please. And I am now the proud owner of more calloused hands--yes as I am doing more my hands are returning to their previous callous state. Thanks to last month's post I am no longer self conscious about my hands. I do not try to hide them like I have been doing for decades. I have manly hands and no one as a result pushes me around. Hell, I do not even have handles on my wheelchair--I gave them up long ago. I do not get pushed and I do not get carried. The only person that I will allow push my wheelchair is my son and only when I am faced with an impossible hill--think San Francisco or Seattle waterfront.
As pleased as I am with my hands I am not pleased with my beard. I am getting asked questions not about my beard, snowy white, but rather my hair. Yes, my short hair is now object of questioning. I do not like the question. People want to know if I am dying my hair or asking me why I don't dye my beard. For the record, I am not nor will I ever dye may hair. I am getting old and that fact does not bother me one iota. But I do not like the question about hair dying. In fact a large part of me misses my long hair. Amazingly even my mother misses it too--she thinks the long hair was preferable to my white beard. Go figure. This leads me to ask is it that unusual to see a guy with a white beard and dark hair? Am I breaking some sort of social rule I am unaware of? My post about my calloused hands led to a totally unexpected response. So here i go again: what should I do with my beard? I am tempted to shave it off but am hesitant--growing a beard requires two of looking very scruffy. I do not want to go through that again. I also love the idea of being a paralyzed Santa next Christmas.
Wound Care: The Final Entry
Monday, May 23, 2011
My original wound from last Fall is healed. Yes, my long experience with wound care has come to a halt. My right hip, the large grossly infected hip wound is officially gone. I will have quite the scar to remind me to be exceedingly careful. I am by no means going to simply hop up and resume my old schedule. That will take time and patience. But the life threatening original problem is gone. I am happy in the extreme. I can move my bed out of my living room and into the bedroom. I can put all my furniture back. I can actually relax when sitting. Today is a big day! I did not get here alone however. I had world class help from my family, friends, and the wound care people at Northern Westchester Hospital. The big question now is the future: how to never ever put myself in this position again. I am going to be cautious in the extreme. Going out today and buying the biggest mirror I can find for self examination. But for now it is party time!
Exoskeleton as a Social Problem: The Glorification of Walking
Monday, May 16, 2011
I have written a number of posts about the exoskeleton. This is an invention that simply will not die a peaceful death and go away. I am actually beginning to get worried the device will be taken seriously. I see it as yet another dubious invention designed to help paralyzed people walk. By itself, the ideal of walking, is not a bad thing. We humans, I will readily acknowledge, are designed to walk. It is the how we have navigated the world for millions of years. But it is not the only means of navigating the world--especially when a disability enters one's life. We humans are quite capable of adaptation in the face of a bodily deficit. We adapt for practical and social reasons. The paralyzed cannot walk and hence use a wheelchair. I consider a wheelchair a powerful and liberating technological revolution--note the word revolution. I cannot function without my wheelchair. Crawling is an inefficient means of locomotion, my only other legitimate option. Or is the exoskeleton the next best thing? I think not. Indeed, I have no doubt it is not. I am less troubled by its invention---it is the by product of the defense department--than I am by the social reception it has and will continue to receive. So let me be very clear: if researchers want to spend money on the exoskeleton go ahead. Just do not ask me to fund it or support the effort.
My problem with the exoskeleton is the blatant message it sends to its users and society. Walking is the ideal and only means of locomotion. Anything different, is bad, less, demeaning; you fill in the blank with your favorite adjective. We should all aspire to walk. It is the begin and end all. You cannot function if you cannot walk. You cannot be employed if you cannot walk. Society demands little of us but one requirement to be a full member of humanity is the ability to walk. Walking means you are human, walking means you are a functional member of society. If you cannot walk you are either sick, lazy, or hopelessly dysfunctional. Your life must be dedicated to walking. Lose the ability to walk and you cannot pass go or collect $200. Walking is required. We are taught this from childhood. We see images of little children learning to walk, holding their parents hand and we are moved to tears. This is just the start--our physical environment is designed solely for people that can walk. Sure there are ramps and elevators but do we really value those things? In a word, no. We add those ramps and elevators because we in America are required to do so by law. If I have learned one thing in my 30+ years of paralysis it is that bipedal people do not care one iota about my existence or how needlessly difficult my life is. It is difficult not because I am unable to walk but because my mere presence is not wanted. How else do you explain the continued lack of physical access and gross lack of social supports?
I was reminded of my low status social status and glorification of walking when I read a story in the San Francisco Chronicle yesterday, May 15. In "Exoskeleton Lets UC Berkeley Grad Take Huge Step" the newspaper reports that "Austin Whitney walked on Saturday. No faith healers were involved. Yet when the paralyzed 22-year-old rose from his wheelchair and stepped across the UC Berkeley commencement stage to shake Chancellor Robert Birgeneau's hand, the crowd of 15,000 at Edwards Stadium went wild with cheers, as if witnessing a miracle". Rather than cheer I hung my head in despair. I will never be valued as an American in my life time. Twenty years after the ADA people still do not get disability. Worse yet, the glorification took place at the University of California at Berkeley, the home of the disability rights movement. A university that Ed Roberts had to sue to attend, a university that saw the first group of "Rolling Quads" that forced themselves onto an American college campus. I was deeply depressed when I read this story. There really is no place for me in American society. Social progress is glacial. Wheelchair use is perceived to be the same failure it was when I was paralyzed in 1978. But the exoskeleton is a miracle! It is like putting on an "Iron Man suit and acquiring super powers". How we Americans love technology but are fickle in what we embrace. Wheelchair bad exoskeleton good.
Let's delve into this miracle a little bit. Researchers have been working on the exoskeleton for a decade at Berkeley. The exoskeleton requires a walker or crutches and the user must wear a back pack power supply. No mention how heavy this is. It takes months to master and no mention is made of how far you can actually traverse or the sort of terrain you can go over. In short, it took months for the user, a lead researcher and four graduate students to program the exoskeleton so it could go across a stage. This was a made for TV event. Did the user walk across the stage in the exoskeleton when his name came up in the alphabet? Of course not, he was the main attraction at graduation. In the old days this was called a freak show. I am so glad we as a society have progressed. The newspaper reports: "On Saturday, as more than 2,000 seniors in caps and gowns stood beneath chilly gray skies waiting for their names to be called, Whitney remained behind the stage until nearly all had shaken the chancellor's hand. Then, his yellow history honors ribbon flapping against the exoskeleton strapped around his gown, he wheeled his chair up onto the stage, accompanied by members of the engineering team". And yes he then rises and walks across the stage! Oh Lord it is a miracle! The crowd goes nuts! And all this can be yours for a cool $15,000, the stripped down model that is. The super cool model cost $90,000 or $60,000 cheaper then the New Zealand model. Gee what a bargain.
I never met Ed Roberts but I bet he would appalled at what took place. I am stunned a university such as the University of California at Berkeley could lower itself to such a level. Surely someone in the administration should know its history as a leader in disability rights and put forth a basic question: is an exoskeleton demonstration a good idea? What if anything does such a demonstration mean symbolically? How will such a demonstration make other people who use a wheelchair and are graduating feel? I can answer these questions. Symbolically the university acknowledges walking is the cultural ideal. Those that cannot walk and use a wheelchair are lesser humans. Those that graduated and used a wheelchair are social failures. Thus by extension I am a social failure as is every other person that uses a wheelchair. We need to aspire to walk. No walking no wild cheers.
Having been virtually stuck in my own home for the last seven months because of my wound I have desperately missed social interaction. Now that I am nearly healed and getting out more I am shocked at the routine and every day violation of my rights. I am stunned at just how unequal the world remains for those that use a wheelchair. Ah, how quickly we forget! Even a cosmopolitan city such as New York presents needless barriers. For instance I was just at the NYC Tattoo convention. I emailed the organizers and was assured the site was accessible. When I arrived there were four steps to enter and get to the ticket booth. I would think this is need to know information, How exactly was I expected to access the ticket booth independently? I was not supposed to because, well you know, people that use a wheelchair are not independent. I am expected to ask for help and use the back door entrance. Similarly I am not allowed in the elevator myself. I must have a guard press the up or down button for me. What I am needlessly deprived of is independence and respect. We as a society do not value my existence hence a lift to the front entrance is not needed. Enter through the back door, a supposedly reasonable and, dare I say cost free, accommodation. I would vehemently disagree. It is not reasonable to make people dependent. It is in a word cheap. I have value. I have rights. Too bad people that walk do not see it that way. Today I feel like a black man living in Alabama when the Jim Crow Laws were in place. Equality was decades away. The ADA was a start, the battle is far from won, indeed it seems the most basic victory is very distant.
My problem with the exoskeleton is the blatant message it sends to its users and society. Walking is the ideal and only means of locomotion. Anything different, is bad, less, demeaning; you fill in the blank with your favorite adjective. We should all aspire to walk. It is the begin and end all. You cannot function if you cannot walk. You cannot be employed if you cannot walk. Society demands little of us but one requirement to be a full member of humanity is the ability to walk. Walking means you are human, walking means you are a functional member of society. If you cannot walk you are either sick, lazy, or hopelessly dysfunctional. Your life must be dedicated to walking. Lose the ability to walk and you cannot pass go or collect $200. Walking is required. We are taught this from childhood. We see images of little children learning to walk, holding their parents hand and we are moved to tears. This is just the start--our physical environment is designed solely for people that can walk. Sure there are ramps and elevators but do we really value those things? In a word, no. We add those ramps and elevators because we in America are required to do so by law. If I have learned one thing in my 30+ years of paralysis it is that bipedal people do not care one iota about my existence or how needlessly difficult my life is. It is difficult not because I am unable to walk but because my mere presence is not wanted. How else do you explain the continued lack of physical access and gross lack of social supports?
I was reminded of my low status social status and glorification of walking when I read a story in the San Francisco Chronicle yesterday, May 15. In "Exoskeleton Lets UC Berkeley Grad Take Huge Step" the newspaper reports that "Austin Whitney walked on Saturday. No faith healers were involved. Yet when the paralyzed 22-year-old rose from his wheelchair and stepped across the UC Berkeley commencement stage to shake Chancellor Robert Birgeneau's hand, the crowd of 15,000 at Edwards Stadium went wild with cheers, as if witnessing a miracle". Rather than cheer I hung my head in despair. I will never be valued as an American in my life time. Twenty years after the ADA people still do not get disability. Worse yet, the glorification took place at the University of California at Berkeley, the home of the disability rights movement. A university that Ed Roberts had to sue to attend, a university that saw the first group of "Rolling Quads" that forced themselves onto an American college campus. I was deeply depressed when I read this story. There really is no place for me in American society. Social progress is glacial. Wheelchair use is perceived to be the same failure it was when I was paralyzed in 1978. But the exoskeleton is a miracle! It is like putting on an "Iron Man suit and acquiring super powers". How we Americans love technology but are fickle in what we embrace. Wheelchair bad exoskeleton good.
Let's delve into this miracle a little bit. Researchers have been working on the exoskeleton for a decade at Berkeley. The exoskeleton requires a walker or crutches and the user must wear a back pack power supply. No mention how heavy this is. It takes months to master and no mention is made of how far you can actually traverse or the sort of terrain you can go over. In short, it took months for the user, a lead researcher and four graduate students to program the exoskeleton so it could go across a stage. This was a made for TV event. Did the user walk across the stage in the exoskeleton when his name came up in the alphabet? Of course not, he was the main attraction at graduation. In the old days this was called a freak show. I am so glad we as a society have progressed. The newspaper reports: "On Saturday, as more than 2,000 seniors in caps and gowns stood beneath chilly gray skies waiting for their names to be called, Whitney remained behind the stage until nearly all had shaken the chancellor's hand. Then, his yellow history honors ribbon flapping against the exoskeleton strapped around his gown, he wheeled his chair up onto the stage, accompanied by members of the engineering team". And yes he then rises and walks across the stage! Oh Lord it is a miracle! The crowd goes nuts! And all this can be yours for a cool $15,000, the stripped down model that is. The super cool model cost $90,000 or $60,000 cheaper then the New Zealand model. Gee what a bargain.
I never met Ed Roberts but I bet he would appalled at what took place. I am stunned a university such as the University of California at Berkeley could lower itself to such a level. Surely someone in the administration should know its history as a leader in disability rights and put forth a basic question: is an exoskeleton demonstration a good idea? What if anything does such a demonstration mean symbolically? How will such a demonstration make other people who use a wheelchair and are graduating feel? I can answer these questions. Symbolically the university acknowledges walking is the cultural ideal. Those that cannot walk and use a wheelchair are lesser humans. Those that graduated and used a wheelchair are social failures. Thus by extension I am a social failure as is every other person that uses a wheelchair. We need to aspire to walk. No walking no wild cheers.
Having been virtually stuck in my own home for the last seven months because of my wound I have desperately missed social interaction. Now that I am nearly healed and getting out more I am shocked at the routine and every day violation of my rights. I am stunned at just how unequal the world remains for those that use a wheelchair. Ah, how quickly we forget! Even a cosmopolitan city such as New York presents needless barriers. For instance I was just at the NYC Tattoo convention. I emailed the organizers and was assured the site was accessible. When I arrived there were four steps to enter and get to the ticket booth. I would think this is need to know information, How exactly was I expected to access the ticket booth independently? I was not supposed to because, well you know, people that use a wheelchair are not independent. I am expected to ask for help and use the back door entrance. Similarly I am not allowed in the elevator myself. I must have a guard press the up or down button for me. What I am needlessly deprived of is independence and respect. We as a society do not value my existence hence a lift to the front entrance is not needed. Enter through the back door, a supposedly reasonable and, dare I say cost free, accommodation. I would vehemently disagree. It is not reasonable to make people dependent. It is in a word cheap. I have value. I have rights. Too bad people that walk do not see it that way. Today I feel like a black man living in Alabama when the Jim Crow Laws were in place. Equality was decades away. The ADA was a start, the battle is far from won, indeed it seems the most basic victory is very distant.
Hardest Hit March: Part Two
Thursday, May 12, 2011
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.
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: 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
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.
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.
Custom Steamer Product: Sunn Radical lowering shock shuttle
Wednesday, May 4, 2011
This is a new product I have recently machined up for a mate who rides on board a Sunn Radical. Only slightly heavier than the stock product it gives a good way to adjust the bike for different tracks and make the bike handle better in general
Can be fitted with 3, 2, 1 and zero offset so get optimal Geo for any track.
Contact Kev if intrested in the product.
NYC Cab of Tommorrow: A Bipedal Only Cab
Mayor Bloomberg announced the winner of the "taxi of tomorrow" winner. The winner is a a suburban mom mobile, the Nissan NV200. The taxis that will come to dominate the city has lots of features people want. Passenger airbags, a GPS system, USB charging ports, separate climate controls, sliding doors, see through roof, and it gets 25 mpg. The contract between Nissan and the city will last 10 years and is worth about $1 billion in sales. Mayor Bloomberg is thrilled. He stated "It's going to be the safest and most convenient cab the city has ever had. They will be custom designed to meet the specific demands of carrying 6000,000 passengers a day in New York City traffic".
I have no idea if Mayor Bloomberg made the right choice in selecting the Nissan NV 200. But I do know Bloomberg and the Taxi and Limousine Commission do not give a damn about wheelchair access. Yes, I suppose we pesky people with a disability, especially those that use a wheelchair, are not part of the future. It is hard to get excited knowing that of the 13,237 taxis in New York City a grand total of 240 are required to be accessible. Getting a cab in New York City is never easy for a person that uses a wheelchair. In my experience a NYC cabbie would rather pick up a deranged and armed gunman before stopping for a person that uses a wheelchair. If you think I exaggerate I suggest you try to hail a cab using a wheelchair. The so called "taxi of tomorrow" is yet another sign of inequality. It is a not so subtle fuck you to every New Yorker that uses a wheelchair. In fact., I think it is an in your face sort of fuck you. We crippled people are not part of the past, present, or future. What this means to me is that for the next decade or more getting a cab in New York City will remain problematic at best. Yes, the cabs will transport 600,000 people. 600,000 people that can walk. We people that have a disability and use a wheelchair are screwed. Worse yet, I am not surprised. This is just another example of how people with a disability always seem to get the shaft. It is so common, so expected, it does not even merit shock and indignation. Only one story I read about the "taxi of tomorrow" even mentioned the lack of wheelchair access. Where is the outrage? I am mad as hell and seem to be the lone voice of dissent. How is that we have an amenity laden cab and yet one that is not accessible. The reason is simple: we value a GPS unit, we value USB ports, we value a sun roof, sliding doors, air bags etc. We value these things. They are part of the fabric of our lives. Today, I realize my existence as a New Yorker is not as important as material things. What a sad but not surprising commentary.
I have no idea if Mayor Bloomberg made the right choice in selecting the Nissan NV 200. But I do know Bloomberg and the Taxi and Limousine Commission do not give a damn about wheelchair access. Yes, I suppose we pesky people with a disability, especially those that use a wheelchair, are not part of the future. It is hard to get excited knowing that of the 13,237 taxis in New York City a grand total of 240 are required to be accessible. Getting a cab in New York City is never easy for a person that uses a wheelchair. In my experience a NYC cabbie would rather pick up a deranged and armed gunman before stopping for a person that uses a wheelchair. If you think I exaggerate I suggest you try to hail a cab using a wheelchair. The so called "taxi of tomorrow" is yet another sign of inequality. It is a not so subtle fuck you to every New Yorker that uses a wheelchair. In fact., I think it is an in your face sort of fuck you. We crippled people are not part of the past, present, or future. What this means to me is that for the next decade or more getting a cab in New York City will remain problematic at best. Yes, the cabs will transport 600,000 people. 600,000 people that can walk. We people that have a disability and use a wheelchair are screwed. Worse yet, I am not surprised. This is just another example of how people with a disability always seem to get the shaft. It is so common, so expected, it does not even merit shock and indignation. Only one story I read about the "taxi of tomorrow" even mentioned the lack of wheelchair access. Where is the outrage? I am mad as hell and seem to be the lone voice of dissent. How is that we have an amenity laden cab and yet one that is not accessible. The reason is simple: we value a GPS unit, we value USB ports, we value a sun roof, sliding doors, air bags etc. We value these things. They are part of the fabric of our lives. Today, I realize my existence as a New Yorker is not as important as material things. What a sad but not surprising commentary.
Money: How it is Spent Makes No Sense
Tuesday, May 3, 2011
A few days ago I read about my favorite invention I love to poke fun of--the human exoskeleton that enables paralyzed people to walk. Today I read 89 protesters from my favorite disability rights group, ADAPT, were arrested in Washington DC. What do these two disparate stories have to do with one another? Money stupid! Rex Bionics, a New Zealand company, has just sold its first custom fitted robotic exoskeleton to Dave MacCalman. MacCalman has represented New Zealand in the Paralympics, winning gold and silver medals. The exoskeleton is, in my estimation, silly in the extreme. In fact the words pointless waste of resources come to mind. And when it comes to resources much was spent. The exoskeleton took seven years and $10 million in development costs. Read that sentence again--carefully. And exactly how much does an exoskeleton cost? It retails for nearly $150,000 USA dollars. That is a lot of money. Now if I had a spare $150,000 I would not spend it on an exoskeleton. No, I would spend such money wisely. I would buy a high end sports car. A Porsche 911 Turbo that retails for $135,500. I would even have money left over to buy gas, go up to 135 mph, have 500 horse power, get 24 miles to a gallon, and be able to go from 0 to 60 in less than three seconds. This is may not be what everyone needs but it sure is valued by some. The point here is that the exoskeleton is about as practical as a Porsche 911 turbo. Practical or not we value such cars, priceless engineering, and walking. Walking is very nice. Driving a Porsche 911 is very nice too. But are either really important in the bigger picture of life? Not in my opinion. Would it nice to be able to walk around my house? Yes it would but it is nothing to aspire to nor is it worth spending $150,000. Waking does not define who we are as humans any more than the Porsche 911 turbo defines car making.
The exoskeleton and Porsche 911 are feats of engineering that are not needed. There are far more important things in life than the ability to walk or drive a car that costs $150,000. This is what I was thinking when I read about the 89 people from ADAPT that got arrested. ADAPT was protesting Paul Ryan's Medicaid plan that would force people with a disability into a nursing home rather than live in their own home. The issue as I understand it would turn Medicaid into block grants and reduce spending by more than $700 billion over ten years. The protesters were arrested by Capital Police for occupying the rotunda. I wish I was there for I know how sound travels in a rotunda. I bet they were loud and confrontation. ADAPT people get what is important. People with a disability, like all those pesky people that can walk, value their independence. This is something we as a society should invest in--independence and autonomy. No one can be independent and autonomous in a nursing home. In an institution you do not control your own destiny. Why we do not seek to empower people is a mystery. Why we spend invest, develop, and spend millions on things, material objects such as an exoskeleton and Porsche 911 turbos is a mystery. Which is more important, a material object, albeit a very cool one like a Porsche, or people's lives?
The exoskeleton and Porsche 911 are feats of engineering that are not needed. There are far more important things in life than the ability to walk or drive a car that costs $150,000. This is what I was thinking when I read about the 89 people from ADAPT that got arrested. ADAPT was protesting Paul Ryan's Medicaid plan that would force people with a disability into a nursing home rather than live in their own home. The issue as I understand it would turn Medicaid into block grants and reduce spending by more than $700 billion over ten years. The protesters were arrested by Capital Police for occupying the rotunda. I wish I was there for I know how sound travels in a rotunda. I bet they were loud and confrontation. ADAPT people get what is important. People with a disability, like all those pesky people that can walk, value their independence. This is something we as a society should invest in--independence and autonomy. No one can be independent and autonomous in a nursing home. In an institution you do not control your own destiny. Why we do not seek to empower people is a mystery. Why we spend invest, develop, and spend millions on things, material objects such as an exoskeleton and Porsche 911 turbos is a mystery. Which is more important, a material object, albeit a very cool one like a Porsche, or people's lives?
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