Berkeley Bionics, the California based developer of the the exoskeleton I have railed against is in the news again. In a media release they have announced a partnership with ten of the nations leading rehabilitation centers. Yes, the exoskeleton is going to be used at ten leading centers for rehabilitation. I do not know whether to laugh or cry. I am sure Berkeley Bionics is thrilled--the stock worth will surely go up. The rehabilitation centers, some I admire, get a cool new toy to play with. This will draw newly paralyzed people and the skeptic in me wonders if this too is about profit margin. These ten rehabilitation centers will become the first "eLEGS Centers in the world". If there were audio to this blog you would hear an audible groan.
I am still stunned the exoskeleton gets heaped with such praise. It was one of CNN's top ten innovations, a Wired top ten gadget, and one of TIME's best inventions, all in 2010. The hype and media reception over this device puzzles me. I get the hype coming out of Berkeley Bionics--they are a corporation, a new one at that, trying to make a name for themselves. Thus I can dismiss words from Eythor Bender, CEO who thinks "We are on the verge of a new era of mobility for people with paralysis, using bionic exoskeletons -- first in rehabilitation centers -- and later making them available for home/personal use. We have been fortunate to team up with some of the most respected rehabilitation centers in the world, embarking on this important journey". The journey Bender refers to I would suggest is first and foremost one designed for profit. That profit starts with creating customers in rehabilitation centers too naive to understand the larger implications of the exoskeleton.
I do not blame newly minted paralyzed people with wanting to try out the exoskeleton. In theory it sounds like a good idea. I do not blame rehabilitation centers for trying this new technology out either. I would think there is some possible medical benefit to the exoskeleton, especially for a very young person with a spinal cord injury. And since I am an American, and we Americans love to play the blame game, where does the blame lye in the glorification of the exoskeleton? I place blame blame on American society at large for consistently refusing to perceive wheelchair use as anything less than a tragedy. Terms like "wheelchair bound" are used daily and we as a nation refuse to value people that use a wheelchair. We refuse to make our buildings accessible--courts, schools, stores, stadiums, airports, mass transportation centers, hospitals, universities, etc. I have encountered obstacles at each one of these places--not twenty years ago when the ADA was passed into law but today. What happens when I complain about the lack of access? I am deemed unreasonable, a bitter cripple who wishes he could walk. This line of reasoning makes me crazy. It misses the point so badly it would be laughable if it were no so common place. I am mad because we do not value access--it is not expected or desired. We only provide access because it is the law. That law, civil rights legislation called the ADA is begrudgingly adhered to but no one really cares. If people cared I would not encounter the needless architectural problems I come across daily.
Into the void of not caring about access for people with a disability, by access here I mean equal rights not only terms of architecture but civil rights, we waste valuable and limited resources with dubious inventions like the exoskeleton. This highlights a problem that has plagued the ADA--the notion of a "reasonable accommodation". The people who decide what is reasonable are not people with a disability--they are simply not in positions of power. Into this void steps (pun intended) the exoskeleton. Anyone who can walk thinks walking is the best form of locomotion. They are right it is what the human body was designed to do but I would argue a wheelchair is no less efficient means of motion. I do not know a single content person that uses a wheelchair that dreams or has ambitions of walking again. We simply move on with life. We get jobs, have a career, family,etc. If we have any mutual desire it is for more efficient reliable wheelchairs. Here is where I get upset--imagine if the resources put into the development of the exoskeleton were put into wheelchair technology? What inventions, new designs, different materials could have been developed as a result? I assure you finding a high end wheelchair is no easy task. American manufacturers have no interest in the development of high end wheelchair because insurance will not pay for such wheelchairs. And insurance drives the wheelchair business.
Do not take my extended complaints about the exoskeleton to infer I am anti technology. Nothing could be further from the truth. My point is that all technology has a social element and I cannot overlook the very bad message the exoskeleton sends. Indeed, it makes me mourn for a simple time when people who were paralyzed were told point blank you are paralyzed and will never walk again. Yes, this is a hard reality to accept. However people, once paralyzed, need to maximize the muscles they can move and this is where technology need to be directed. Thus while the exoskeleton makes headlines another technological innovation received scant press. Here I refer to an invention that I think combines technology with an additional cool factor. The New York Times reported about a device that enables a high level quad to steer his or her wheelchair via a tongue piercing. The magnetic stud would allow a person to steer the wheelchair with their tongue thereby negating the need for a sip and puff wheelchair. This is exciting to me--it combines non traditional body modification and technology in a way that truly empowers a person (curiously this story appeared in the Health section of the NYT and not Technology section).
The point I have tried to stress is that technological innovation is designed to meet a perceived social need. There is no need to walk after a paralyzing injury. The only need I have along with all those who are paralyzed and even more generally disabled in in some way is to be valued, our simple presence wanted. This starts with being treated equally--that means equal access to all parts of society. This is very much a minority viewpoint. To consider one's paralyzed body equal requires going against the social grain. I have been doing this for the past thirty two years and hope someday it will no longer be necessary. Inventions like the exoskeleton and the resources used to develop it make me doubt that day will be coming any time soon.
Wednesday, June 8, 2011
Saturday, May 28, 2011
Ladies, Ladies, Ladies
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.
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.
Monday, May 23, 2011
Wound Care: The Final Entry
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!
Monday, May 16, 2011
Exoskeleton as a Social Problem: The Glorification of Walking
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.
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.
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.
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