A friend sent me a link to an article in the Huffington Post by Timothy Shriver, Chairman of the Special Olympics and long time advocate for those with intellectual disabilities. In part Shriver was inspired to write because of a series of articles in the New York Times and specifically the death of Jonathan Carey. Carey was a 14 year old man with autism that died in the care of the State of New York. The state did not kill Carey but sure did play a significant role in his needless and tragic death. What has struck me about the story of Carey's death is the lack of a response. Just another person with a disability that is dead. Ho hum. This makes for filler on newscasts and newspapers. Worse yet, Carey is the tip of the iceberg according to Shriver--and he is sadly correct. The death of people with a disability is somehow seen not as tragic but a release from their suffering. This makes the general public feel good but scares me to death. It is indicative of a social, governmental and health care failure. This has led Shriver to postulate:
"How is it possible that more than three decades after the United States began to desegregate schools for people with intellectual disabilities, more than two decades after the United States passed the Americans with Disabilities Act, and five years after the United Nations adopted the Convention on the Rights of Persons with Disabilities, a massive dignity deficit remains? The bitter truth is that subtle but persistent discrimination against people with intellectual disabilities remains rampant around the world. Sadly, most people still perceive a person with an intellectual disability as incapable of contributing to his community and thus, treat her as a liability that is all too easily ignored. The language we use is revealing: they are "in-valids", "retards", "dis-abled".
It's a short distance from that type of discrimination to abuse and even murder, but it's an equally short distance from empowerment to dignity.
The phrase "out of sight out of mind" comes to mind. We shunt off people with disabilities to group homes, nursing homes, resource rooms at school, special seating at stadiums and in mass transportation. This sort of segregation is not only allowed but socially sanctioned. It is perfectly legal. It is also wrong and destroys the lives of millions of people with a disability. The disability does not matter--the social isolation and intolerance is simply wrong. What I want to know is when will this end? How many more people need to die before we as a society will not tolerate such abuses?
Saturday, June 25, 2011
Thursday, June 23, 2011
Grim News on Both Sides of the Atlantic
Every evening I look out my living room windows I consider myself an exceedingly lucky man. I have much to be thankful for. My life is rapidly resembling what it was before my wound last Fall. My son is home from college and we have spent some real quality time together. My family was and remains supportive. All this is quite unusual for a person with a disability. The ordinary is too often not possible for people with a disability. When I openly state this to others I know they look at me and roll their eyes. Come on they say, things are not that bad. They are correct. For me life is sweet. Life is not so sweet for my fellows with a disability. How do I know this? It does not take much thought on my part. Simply living life I come across needless obstacles large and small. I read about discrimination people with a disability encounter every day. For instance, a man was forced off an airplane by a pilot who deemed him a flight risk, a person with Down Syndrome was barred from boarding a flight, a couple being refused service in restaurant because they used wheelchairs, service dogs barred from schools, and the list of violations goes on and on. Little or nothing is done. Pilots get sent to sensitivity training, airlines are fined, and the cycle of civil rights violations endlessly repeats itself. Progress is a myth--or so I think on this gloomy day. I am gloomy not because of the weather but I have carefully read two well crafted and researched surveys. The results are troubling.
The surveys I refer to were conducted by Scope in the UK last May and the second by The ARC entitled "Still in the Shadows with Their Future Uncertain". Both surveys are readily available on line. Simply check out the Scope and ARC websites. The findings do not surprise me one iota.Let's start in the UK. According to Scope:
56% of people with a disability report they have experienced hostility, aggression, or violence from a stranger because of their impairment.
50% of people with a disability report experiencing weekly if not daily discrimination.
37% report people's attitude toward them have gotten worse over the past year.
41% of people without a a disability state they have never witnessed a person with a disability discriminated against.
The ARC survey is equally grim.
Fewer than one third of students with developmental or intellectual disabilities are fully included in regular classrooms in regular schools.
58% of parents report spending more than 40 hours per week providing support for their loved one.
46% of parents report that they have more care giving responsibilities than they can handle.
88% of parents report that they are suffering from physical fatigue, emotional stress, and guilt.
1 of 5 families report that someone in the family had to quit their job to stay at home to support the needs of their family member.
75% o families cannot afford or find after school activities, home care providers, or respite care.
62% of families report services utilized have been cut or eliminated.
43% of families report that schools have cut back on services.
32% of families report they are on the waiting list for government funded services with an average wait of more than five years.
A conservative estimate is that there are more than 1 million people waiting for services that will most likely never come.
I could provide many more on statistics but the above should suffice. Yes, the economy has affected the rich and poor in the the UK and USA. But I think these figures demonstrate a disproportionate number of people with disabilities, especially those with cognitive disabilities, have been profoundly hurt. Where I wonder is the outrage? We saw it spill over into the streets of London last month. Here in the USA the assault on disability support services does not even merit a spot on the national news or blurb in the newspaper. What is most troubling to me is that things are going to get far worse before they get better. Republicans led by Paul Ryan propose to cut more than $770 billion over the next ten years from the Medicaid program. Nationally, more than 700,000 people with cognitive disabilities are living with caregivers who are 60 years or older. Worse yet 73% of families report they do not have adequate savings for retirement.
Yes, the statistics are grim indeed. Beyond the numbers, even if you fudge them, what deeply bothers me is the most basic: no one cares. My neighbors do not care. Institutions do not care. I care. I care a lot. I lost sleep thinking about these surveys last night. The power went out for a while and I feared for the future. I feared not for myself but others--others I know who are socially and economically isolated. Who speaks for them? Who protects them? Our government? Do not make me laugh. Our so called representatives are a class apart from those that elect them to office. Sorry but I cannot provide any positive spin on the above. Grim, grim, grim.
The surveys I refer to were conducted by Scope in the UK last May and the second by The ARC entitled "Still in the Shadows with Their Future Uncertain". Both surveys are readily available on line. Simply check out the Scope and ARC websites. The findings do not surprise me one iota.Let's start in the UK. According to Scope:
56% of people with a disability report they have experienced hostility, aggression, or violence from a stranger because of their impairment.
50% of people with a disability report experiencing weekly if not daily discrimination.
37% report people's attitude toward them have gotten worse over the past year.
41% of people without a a disability state they have never witnessed a person with a disability discriminated against.
The ARC survey is equally grim.
Fewer than one third of students with developmental or intellectual disabilities are fully included in regular classrooms in regular schools.
58% of parents report spending more than 40 hours per week providing support for their loved one.
46% of parents report that they have more care giving responsibilities than they can handle.
88% of parents report that they are suffering from physical fatigue, emotional stress, and guilt.
1 of 5 families report that someone in the family had to quit their job to stay at home to support the needs of their family member.
75% o families cannot afford or find after school activities, home care providers, or respite care.
62% of families report services utilized have been cut or eliminated.
43% of families report that schools have cut back on services.
32% of families report they are on the waiting list for government funded services with an average wait of more than five years.
A conservative estimate is that there are more than 1 million people waiting for services that will most likely never come.
I could provide many more on statistics but the above should suffice. Yes, the economy has affected the rich and poor in the the UK and USA. But I think these figures demonstrate a disproportionate number of people with disabilities, especially those with cognitive disabilities, have been profoundly hurt. Where I wonder is the outrage? We saw it spill over into the streets of London last month. Here in the USA the assault on disability support services does not even merit a spot on the national news or blurb in the newspaper. What is most troubling to me is that things are going to get far worse before they get better. Republicans led by Paul Ryan propose to cut more than $770 billion over the next ten years from the Medicaid program. Nationally, more than 700,000 people with cognitive disabilities are living with caregivers who are 60 years or older. Worse yet 73% of families report they do not have adequate savings for retirement.
Yes, the statistics are grim indeed. Beyond the numbers, even if you fudge them, what deeply bothers me is the most basic: no one cares. My neighbors do not care. Institutions do not care. I care. I care a lot. I lost sleep thinking about these surveys last night. The power went out for a while and I feared for the future. I feared not for myself but others--others I know who are socially and economically isolated. Who speaks for them? Who protects them? Our government? Do not make me laugh. Our so called representatives are a class apart from those that elect them to office. Sorry but I cannot provide any positive spin on the above. Grim, grim, grim.
Wednesday, June 22, 2011
Catching up: Me and Roy Campanella
Wow, it has been a while since I have put up a post. No bad news to report here. I am just delighted to slowly be getting my life back. I am sitting up more and more each day. I am doing more each day. Things that were once a chore are now a delight. This week I did a major expedition to the grocery store. The first time I have done this mundane chore since September. My timing is perfect as my son is home from college and eating me out of house and home. No human can eat as much as a hungry 19 year old male. I am also getting out on the water--yes, I have been kayaking twice. I re outfitted the interior of my boat with mixed results. The good news is my skin is exceptionally well padded. The bad news is sitting on a roho cushion has severely limited my lateral stability. Skin cares comes first so I am hoping to adapt.
Speaking of adapting, I read a new biography about the life of Roy Campanella. Campanella was among the first black men to break the color barrier in baseball. The history of baseball, particularly integration, has always fascinated me. I have the utmost respect for the men that endured the grossest forms of bigotry to integrate baseball. How men such as Jackie Robison endured the abuse he took is beyond my comprehension. He was far from alone however. In fact, as the biography of Campanella points out there was a very good chance Campanella and not Robinson could have been the first black player in the major leagues. As much a this history is of interest to me I read the book for two reasons: to learn more about the relationship between Campanella and Robison, secondly, to learn about Campanella's post baseball life as a C 5-6 quadriplegic circa 1958. The book in question, Campy: The Two LIves of Roy Campanella by Neil Lanctot, will be of great interest to baseball historians. More than any other author to date he delves into the rocky relationship between Jackie Robinson and Campanella. This contribution is counter balanced by the poorly done chapters on Campenalla's spinal cord injury in a car crash and his life as a paralyzed man. This is a small part of the book (just three chapters of twenty) but undermines the solid scholarship that preceded it. The author, Lanctot, is a baseball historian and has written a previous book about negro league baseball. Thus to be fair he likely knows nothing about disability history. It appears as if his history of disability was limited to rehabilitation, specifically Howard Rusk and the famed Rusk Institute where Campanella was treated after his injury. The lack of attention to contextualizing Campanella's injury is not just unfortunate but leaves the reader with the unmistakable impression that a spinal cord injury is the worst possible thing that could happen to a human being. I certainly do not recommend the experience but what is ignored amid the obvious loss of movement is the social consequences of paralysis. This is where the author could have made an important contribution. Instead he accepted the dominant sociocultural belief--paralysis is a devastating physical injury. This is of course true but the real ramifications are social. Few if any people that walk can make this critically important leap in logic.
In the final three chapters of the biography of Campanella the author frames his spinal cord injury in an overwhelmingly negative tone. Negative even for a baseball book. Here are some examples:
"the almost superhuman recuperative powers that had brushed aside a blistered eye, dislocated thumb, and mangled hands now failed him. Hour after hour, he lay like a corpse, his legs useless, his arms could be extended but able to little else".
"He was what the doctors called a C5 C6 quadriplegic, an utterly dependent prisoner of the Stryker bed, with no control of his bowels or bladder".
"Just getting of the car into Salt Spray [his home]was an ordeal, involved a sliding board and the formidable hoisting skills of his now live in attendant".
"Outwardly, Roy appeared to be handling his plight rather admirably".
"Roy's triumphs--the TV shows, the benefit, the book--all helped keep the worrisome bad thoughts under control. But painful reminders of his past glories and current limitations were inescapable".
"The third Mrs. Campanella proved to be exactly what Roy needed. Thanks to her earlier nurse's training, she was unfazed by his quadriplegia and her attentiveness was nothing short of phenomenal".
"For all his undeniable mastery of the wheelchair he was still utterly dependent out of it. Each morning he began with a two hour ordeal of being lifted out of bed, bathed, shaved and dressed by an attendant whose devotion to the job was often suspect".
"Baseball, though a welcome respite as always, could only temporarily distract him from the day-to-day struggles of a quadriplegic's existence. His life remained limited to the bed or wheelchair, an especially cruel punishment for a man who had once loved nothing more than taking off at a moment's notice".
The above passages are only the most aggregious. I dislike critiquing authors for the books they did not write rather than for the book published. In this case I think the author missed a golden opportunity to delve into the history of disability. I do not expect it to be his focus but he does have the obligation as a historian to contextualize his work. He utterly failed to do this. Yes, he discussed Howard Rusk but did not bother to mention why Campanella never got a job in baseball, visited many stadiums that had no access at all and was often carried to his seat when he attended a game. Surely this compounded Campanella's perceived struggle. This struggle however was not with his body but rather society's failure to accommodate his difference. In this, Campanella shared much with his paralyzed peers who the author states he felt close to. But that is the extent of the analysis.
Maybe I am not being fair to the author--this is afterall a baseball book. But I think I have the right to offer my views as the sub title does refer to the so called "Two lives of Roy Campanella". It is this second life, one with paralysis that is exceptionally weak. It left me wondering what Campanella really struggled with--was it racism in baseball or paralysis. Obvious and striking parallels could have been made but were not. In short, to use a bad pun so rampantly used in sports, the author really missed the ball.
Speaking of adapting, I read a new biography about the life of Roy Campanella. Campanella was among the first black men to break the color barrier in baseball. The history of baseball, particularly integration, has always fascinated me. I have the utmost respect for the men that endured the grossest forms of bigotry to integrate baseball. How men such as Jackie Robison endured the abuse he took is beyond my comprehension. He was far from alone however. In fact, as the biography of Campanella points out there was a very good chance Campanella and not Robinson could have been the first black player in the major leagues. As much a this history is of interest to me I read the book for two reasons: to learn more about the relationship between Campanella and Robison, secondly, to learn about Campanella's post baseball life as a C 5-6 quadriplegic circa 1958. The book in question, Campy: The Two LIves of Roy Campanella by Neil Lanctot, will be of great interest to baseball historians. More than any other author to date he delves into the rocky relationship between Jackie Robinson and Campanella. This contribution is counter balanced by the poorly done chapters on Campenalla's spinal cord injury in a car crash and his life as a paralyzed man. This is a small part of the book (just three chapters of twenty) but undermines the solid scholarship that preceded it. The author, Lanctot, is a baseball historian and has written a previous book about negro league baseball. Thus to be fair he likely knows nothing about disability history. It appears as if his history of disability was limited to rehabilitation, specifically Howard Rusk and the famed Rusk Institute where Campanella was treated after his injury. The lack of attention to contextualizing Campanella's injury is not just unfortunate but leaves the reader with the unmistakable impression that a spinal cord injury is the worst possible thing that could happen to a human being. I certainly do not recommend the experience but what is ignored amid the obvious loss of movement is the social consequences of paralysis. This is where the author could have made an important contribution. Instead he accepted the dominant sociocultural belief--paralysis is a devastating physical injury. This is of course true but the real ramifications are social. Few if any people that walk can make this critically important leap in logic.
In the final three chapters of the biography of Campanella the author frames his spinal cord injury in an overwhelmingly negative tone. Negative even for a baseball book. Here are some examples:
"the almost superhuman recuperative powers that had brushed aside a blistered eye, dislocated thumb, and mangled hands now failed him. Hour after hour, he lay like a corpse, his legs useless, his arms could be extended but able to little else".
"He was what the doctors called a C5 C6 quadriplegic, an utterly dependent prisoner of the Stryker bed, with no control of his bowels or bladder".
"Just getting of the car into Salt Spray [his home]was an ordeal, involved a sliding board and the formidable hoisting skills of his now live in attendant".
"Outwardly, Roy appeared to be handling his plight rather admirably".
"Roy's triumphs--the TV shows, the benefit, the book--all helped keep the worrisome bad thoughts under control. But painful reminders of his past glories and current limitations were inescapable".
"The third Mrs. Campanella proved to be exactly what Roy needed. Thanks to her earlier nurse's training, she was unfazed by his quadriplegia and her attentiveness was nothing short of phenomenal".
"For all his undeniable mastery of the wheelchair he was still utterly dependent out of it. Each morning he began with a two hour ordeal of being lifted out of bed, bathed, shaved and dressed by an attendant whose devotion to the job was often suspect".
"Baseball, though a welcome respite as always, could only temporarily distract him from the day-to-day struggles of a quadriplegic's existence. His life remained limited to the bed or wheelchair, an especially cruel punishment for a man who had once loved nothing more than taking off at a moment's notice".
The above passages are only the most aggregious. I dislike critiquing authors for the books they did not write rather than for the book published. In this case I think the author missed a golden opportunity to delve into the history of disability. I do not expect it to be his focus but he does have the obligation as a historian to contextualize his work. He utterly failed to do this. Yes, he discussed Howard Rusk but did not bother to mention why Campanella never got a job in baseball, visited many stadiums that had no access at all and was often carried to his seat when he attended a game. Surely this compounded Campanella's perceived struggle. This struggle however was not with his body but rather society's failure to accommodate his difference. In this, Campanella shared much with his paralyzed peers who the author states he felt close to. But that is the extent of the analysis.
Maybe I am not being fair to the author--this is afterall a baseball book. But I think I have the right to offer my views as the sub title does refer to the so called "Two lives of Roy Campanella". It is this second life, one with paralysis that is exceptionally weak. It left me wondering what Campanella really struggled with--was it racism in baseball or paralysis. Obvious and striking parallels could have been made but were not. In short, to use a bad pun so rampantly used in sports, the author really missed the ball.
Wednesday, June 8, 2011
You Cannot Kill a Bad Idea: The Exoskeleton Lives
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.
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.
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.
Subscribe to:
Posts (Atom)