I experienced my first miracle! The miracle was not that I came through surgery with flying colors and zero complications. Indeed, for major surgery it went as smoothly as humanly possible. The miracle I refer to was the care and compassion displayed by those I met. From the moment I entered New York Hospital I was treated with the utmost respect. Everyone I met was kind, excellent at their job, and caring. The position of the employee did not matter: the person that took out the trash in my room smiled, said good morning if I was awake and appeared happy. The fourth year medical student that observed my surgery introduced himself, explained his presence and stopped by my room after surgery at least twice to say hello. The nurse that interviewed me before surgery was thorough, had a wonderful brogue, and helped arrange to send me to an older part of the hospital that had private rooms for short term stays after surgery. In so doing my close friend who was going to stay the night with me to insure I received adequate post surgical care could remain in my room. A comfortable cot appeared for her—something we did not request. All this was great but the greatest shock was the nursing care--it exceeded my wildest expectations. The ratio of patient to nurses was appropriate as in the nurses could actually do a thorough job caring for their patients. Better yet, the nurses were young, smart and dedicated. They were good at their jobs, listened to me carefully, and we worked together to be sure I had no complications. It didn’t hurt that were also very pretty and I got a chance to flirt with them!
Another important variable was that each and every question asked was directed at me and not my friend. Not once did a hospital employee make a social gaffe that people with a disability experience daily. Frankly, I am stunned by the kindness I experienced. Aside from my worries about surgery, my main concern was about what would happen to my wheelchair while in surgery. I expressed this concern repeatedly. When it came time for surgery I was escorted through a maze of hallways to the operating room. I got the name of the man who escorted me and was responsible for my chair and humorously told him if my chair disappeared I would spend the rest of my tracking him down so I could shoot him. I had no reason to worry as the surgeon himself took responsibility and took my chair to my friend. He knew it was a central concern and told me that I now had nothing to worry about except that little thing called surgery—a joke that relieved the tension I felt.
What I experienced was a marvel—something I thought was no longer present in modern medicine, humanity. I was treated like a human being about to undergo a major surgical experience. All those I met before and after surgery were kind and caring. I sincerely hope they get to read these words as they all did a great job.
So here is the bad news—my ass feels like it is on fire. The surgical scar is on the perineum and I have a JP drain as well. I cannot sit up for more than hour so my life style for the next ten days will be severely compromised. I am also assuming it will be a month before I can really sit up and not worry about my skin. This is a bit of over kill on my part but skin integrity is something I take seriously. And here I can proudly proclaim that in 32 years of paralysis I have had but two sores on my ass neither of which required hospitalization. Sometimes being paranoid about skin integrity is not such a bad thing.
I may be a self-described bad cripple but even bad cripples can report happy news. And I am indeed quite happy. Surgery went well. One and all I met were respectful, professional and compassionate. A month of ever present worry has ended. Now I look forward to managing my urological care as I once did in a mater of weeks. My ass may burning as I write these words but life has never been so sweet.
Friday, July 30, 2010
Sunday, July 25, 2010
Silence
I will not be posting anything new for at least the next week. I am having surgery tomorrow. Rest assured I will have much to say about my experience. Apparently even prior to admission I am asking too many questions--you know little concerns such as what happens to my wheelchair while I am in surgery. I also asked if the hospital room had an accessible bathroom--the answer was "I think so". Not exactly comforting. But I suppose that is not what happens in hospitals. I am not sure if I am getting ready for surgery or battle. A bit of both perhaps.
Friday, July 23, 2010
Spinal Cord Injury Industry: Part II
In 2004 I lost my temper. Let me explain. I had had it with Christopher Reeve. It took me nine years of listening to drivel about a cure, a dreadful speech at the Democratic National Convention, and a TV show, “Christopher Reeve: Courageous Steps” to lose it. The result was an article in the Ragged Edge, reprinted in the Disability Rag Reader entitled “Wishing for Kryptonite” that I am particularly proud of. I only wish more people read what I had to say—Reeve was a dominate cultural force and my voice was not heard by those I wanted to reach.
In the past month I have confronted an identical dilemma Reeve presented. A new popular voice is emerging in the world of disability. I hope this person will not reach the level of fame Reeve enjoyed—I doubt this will happen but I still worry. I am referring to a man most readers will not have heard of but is on the rise nonetheless. I am referring to Francesco Clark author of the recently released book Walking Papers. Clark is a media darling, well connected in the fashion industry, single, charming, and handsome. He is also a quadriplegic who devotes his time and energy to a cure for SCI. He is an ambassador for the Christopher Reeve Foundation and founder of Clark’s Botanicals. He has been featured in the New York Times—or his parent house was. You can find Clark at fashionable parties in NYC with editors from Harper Bazaar, top models such as Maggie Rizer and Carolina Kurkova as well as designers Narcisco Rodriguez. Frankly I have no idea who these people are but they appear on the pages of Vanity Fair and other magazines that clutter the newsstand. Part of Clark’s emergence is tied to a media blitz associated with his book and the company he founded. Like Reeve, he is wealthy and well connected.
In 2002 Clark dove into a swimming pool and emerged a quadriplegic. He was 24 years old. Walking Papers details his life post injury. His book has been mentioned or reviewed in Vanity Fair, Paper Magazine, Talking Makeup, Tonic and many other fashion periodicals I have never read or heard of. Every mention of his book is breathless—he is lauded as an inspiring figure—see comments at Amazon.com for a stereotypical response. Reviews all note that Clark “suffered a devastating injury”, his life was “thrust into the unknown” and he was “paralyzed from the neck down for the rest of his life”. Oh please spare me the melodrama and hyperbole. This happens to thousands of people a year, none of whom ever warrant a word in the news. Clark is only of interest because he refused to do what the vast majority of people with a SCI do—move on with life. Instead, Clark spent years doing five hours a day of physical therapy in his parent garage converted into a gym at the cost of $35,000. He entered multiple clinical trials and sought alternative therapies for a cure to SCI. He traveled to China where he underwent surgery performed by the controversial surgeon Hongyun Huang. The surgery performed by Huang costs in excess of $25,000 and does not include travel expenses. Most American neurologists reject Huang’s findings and strongly advise their patients not to go to China.
I do not begrudge Clark his wealth and strong family support. He is a lucky man, he states this often and with vigor in Walking Papers. Yet I think he uses his entry into clinical trials, cutting edge research, and surgery as buzz words to distance himself from the social ramifications of his SCI. These interests are well out of the norm—a luxury really—that the vast majority of people with a SCI cannot afford. Let me reiterate—Clark can use his economic power as he sees fit. However, he fails to realize or acknowledge that money can buy many things but it cannot purchase equality. At no point in Walking Papers does Clark delve into a basic fact, people with SCI are marginalized by society and denied their humanity and civil rights. This is as needless as it is wrong. It is also illegal. Searching for a cure to SCI may make Clark feel better about himself but does little to enhance his quality of life, protect or affirm his civil rights, or help other people with a comparable injury that do not have the same financial or familial support.
Clark is very much like Reeve in that he is part of or at the very least enamored with celebrity culture. Clark loves to drop names and was thrilled when friends arranged to have Madonna call him. He was part of the fashion industry before and after his injury—not exactly an industry known for deep thought or advancing social causes. In essence Clark’s book is as superficial as the industry he works in. He is willing to let others consider him inspiring without thinking about the ramifications of such an assessment. Exactly why is Clark inspiring? I cannot think of a single reason after reading 220 pages and wasting twenty dollars. Clark is wealthy man that with his family support lives at home in a lovely house. With strong family support (i.e. financial backing) and connections he started a business of manufacturing and selling very expensive creams and cosmetics at high end department stores. This is a very ordinary story and only unusual because Clark is paralyzed. Here is the key: why should Clark’s success make him any different than a person that can walk? It should not but for doing the ordinary Clark is perceived as inspiring. I for one fail to see any inspiration and instead read a dreary story about capitalistic success. If readers want to read a real life success story I suggest they read about Ed Roberts, known as the father of the Independent Living movement. Roberts is inspiring to me. Robert Murphy, author of the Body Silent is also inspiring to me because he made me realize the stigma I encountered after my SCI was not of my own making but rather a social problem. I was liberated by his book.
None of the figures I admire or history of disability based oppression I deplore factor into Clark’s book. No, for Clark, the problem is entirely personal and practical—paralysis. How very wrong this is! What an erroneous conclusion to reach, one based on an antiquated medical model of disability. Clark accepts without thought the idea disability, SCI in particular, is bad, very bad. Clark is correct in that no one wants to be paralyzed but he needs to put far more thought into the question why. Why is he able to live a rich and full life while others with the exact same level of injury and inalienable civil rights are rotting away in an institution with no chance of escape? Unlike Clark whose focus is on cure and his business I consider the person locked away in an institution far more important. We are talking about people’s lives—lives that are needlessly being lost or wasted. This is a critically important human rights issue Clark and others concerned with a cure to SCI can gleefully ignore. Frankly, I don’t know how these people sleep at night.
In the past month I have confronted an identical dilemma Reeve presented. A new popular voice is emerging in the world of disability. I hope this person will not reach the level of fame Reeve enjoyed—I doubt this will happen but I still worry. I am referring to a man most readers will not have heard of but is on the rise nonetheless. I am referring to Francesco Clark author of the recently released book Walking Papers. Clark is a media darling, well connected in the fashion industry, single, charming, and handsome. He is also a quadriplegic who devotes his time and energy to a cure for SCI. He is an ambassador for the Christopher Reeve Foundation and founder of Clark’s Botanicals. He has been featured in the New York Times—or his parent house was. You can find Clark at fashionable parties in NYC with editors from Harper Bazaar, top models such as Maggie Rizer and Carolina Kurkova as well as designers Narcisco Rodriguez. Frankly I have no idea who these people are but they appear on the pages of Vanity Fair and other magazines that clutter the newsstand. Part of Clark’s emergence is tied to a media blitz associated with his book and the company he founded. Like Reeve, he is wealthy and well connected.
In 2002 Clark dove into a swimming pool and emerged a quadriplegic. He was 24 years old. Walking Papers details his life post injury. His book has been mentioned or reviewed in Vanity Fair, Paper Magazine, Talking Makeup, Tonic and many other fashion periodicals I have never read or heard of. Every mention of his book is breathless—he is lauded as an inspiring figure—see comments at Amazon.com for a stereotypical response. Reviews all note that Clark “suffered a devastating injury”, his life was “thrust into the unknown” and he was “paralyzed from the neck down for the rest of his life”. Oh please spare me the melodrama and hyperbole. This happens to thousands of people a year, none of whom ever warrant a word in the news. Clark is only of interest because he refused to do what the vast majority of people with a SCI do—move on with life. Instead, Clark spent years doing five hours a day of physical therapy in his parent garage converted into a gym at the cost of $35,000. He entered multiple clinical trials and sought alternative therapies for a cure to SCI. He traveled to China where he underwent surgery performed by the controversial surgeon Hongyun Huang. The surgery performed by Huang costs in excess of $25,000 and does not include travel expenses. Most American neurologists reject Huang’s findings and strongly advise their patients not to go to China.
I do not begrudge Clark his wealth and strong family support. He is a lucky man, he states this often and with vigor in Walking Papers. Yet I think he uses his entry into clinical trials, cutting edge research, and surgery as buzz words to distance himself from the social ramifications of his SCI. These interests are well out of the norm—a luxury really—that the vast majority of people with a SCI cannot afford. Let me reiterate—Clark can use his economic power as he sees fit. However, he fails to realize or acknowledge that money can buy many things but it cannot purchase equality. At no point in Walking Papers does Clark delve into a basic fact, people with SCI are marginalized by society and denied their humanity and civil rights. This is as needless as it is wrong. It is also illegal. Searching for a cure to SCI may make Clark feel better about himself but does little to enhance his quality of life, protect or affirm his civil rights, or help other people with a comparable injury that do not have the same financial or familial support.
Clark is very much like Reeve in that he is part of or at the very least enamored with celebrity culture. Clark loves to drop names and was thrilled when friends arranged to have Madonna call him. He was part of the fashion industry before and after his injury—not exactly an industry known for deep thought or advancing social causes. In essence Clark’s book is as superficial as the industry he works in. He is willing to let others consider him inspiring without thinking about the ramifications of such an assessment. Exactly why is Clark inspiring? I cannot think of a single reason after reading 220 pages and wasting twenty dollars. Clark is wealthy man that with his family support lives at home in a lovely house. With strong family support (i.e. financial backing) and connections he started a business of manufacturing and selling very expensive creams and cosmetics at high end department stores. This is a very ordinary story and only unusual because Clark is paralyzed. Here is the key: why should Clark’s success make him any different than a person that can walk? It should not but for doing the ordinary Clark is perceived as inspiring. I for one fail to see any inspiration and instead read a dreary story about capitalistic success. If readers want to read a real life success story I suggest they read about Ed Roberts, known as the father of the Independent Living movement. Roberts is inspiring to me. Robert Murphy, author of the Body Silent is also inspiring to me because he made me realize the stigma I encountered after my SCI was not of my own making but rather a social problem. I was liberated by his book.
None of the figures I admire or history of disability based oppression I deplore factor into Clark’s book. No, for Clark, the problem is entirely personal and practical—paralysis. How very wrong this is! What an erroneous conclusion to reach, one based on an antiquated medical model of disability. Clark accepts without thought the idea disability, SCI in particular, is bad, very bad. Clark is correct in that no one wants to be paralyzed but he needs to put far more thought into the question why. Why is he able to live a rich and full life while others with the exact same level of injury and inalienable civil rights are rotting away in an institution with no chance of escape? Unlike Clark whose focus is on cure and his business I consider the person locked away in an institution far more important. We are talking about people’s lives—lives that are needlessly being lost or wasted. This is a critically important human rights issue Clark and others concerned with a cure to SCI can gleefully ignore. Frankly, I don’t know how these people sleep at night.
Spinal Cord Injury Cure Industry: Part I
I try to avoid writing about the spinal cord injury cure industry. I have strong views about the business of spinal cord injury, none of them positive. My views sharply contrast others who spend much of their post SCI life working toward or hoping for a cure. Let me be clear on one thing: I am not opposed to research for a cure to spinal cord injury. It is a laudable goal, certainly worth the time and effort of scientific researchers. Such a goal should also receive substantial financial backing from the government and private industry. However, I am convinced those with a SCI that have a single minded interest in a cure at the expense of a life, family and career are wasting their time (the archetype being Christopher Reeve). At best, I think these people efforts are misplaced. At worst, I think some medical professionals in the field of spinal cord injury cure and treatment are charlatans that prey on the desperate.
My views as expressed above make some people with a SCI and their loved ones very angry. I do not intentionally want to anger these people—they are just as free as I am to express their opinion. I respect them but that respect is not a two way street. It is not unusual for me to be racked over the coals when I am critical of the SCI cure industry and those that devote their time and energy toward that goal. More to the point, I don’t like being called an “asshole”, a “bad person”, have someone “pity” me, or be considered “narcissistic and bitter” by those interested in a cure. These are direct quotes from comments posted on this blog in 2007—one of the first times I commented about the spinal cord injury business and its larger ramifications. This moral outrage and personal condemnation puzzles me. Let me reiterate: I am not opposed to research for a cure to spinal cord injury. If others want to devote all their time and energy to this goal they are free to do so. If people want to spend a small fortune and go to China for what I consider dubious surgery they are free to do so. I depart from such people in a fundamental way: I have no interest in a cure to SCI. Am I selfish in thinking this way? Yes. In part, at issue is the meaning of the word cure. To me cure would be the eradication of a disease or condition. In terms of SCI, this is not going to happen any time soon, certainly not in my lifetime. Even the most ardent researcher will acknowledge this. Given this, my thinking is why bother getting involved. Is a little more movement or sensation really worth the time and risk or major surgery? For me the answer is a resounding no. I cannot walk but that is hardly a prerequisite for what I want to do with my life. I also have come to conclude that the major problems people with a SCI encounter are social. This more than any level of injury prevents people from leading a rich and full life after a SCI.
I am severely critical of the SCI cure industry and those people who that focus on a cure for three primary reasons. First, these people become media darlings, their lives reduced to nothing more and nothing less than a SCI. This is not only sad but dehumanizing. This stereotype, specifically the paralyzed person that ardently wishes to walk again, is effectively used to raise money (the Reeve Foundation exploited this to an extreme) and deflect attention from the issues that present the greatest obstacles. Those obstacles are the refusal to modify our social environment to be inclusive. It is far easier to donate money, feel good about this and forget that the law requires schools and other public places be accessible. This costs money most are unwilling to spend I in this manner. Current newspaper headlines about draconian budget cuts nationwide to disability services are proof people do not care one iota about the rights of people with a disability.
Second, Americans are not taught about the disability rights movement past or present. As a result civil rights and disability rights are not thought to be one in the same. This is a significant problem. While I can understand why those without a SCI don’t know the history of disability rights in America, I cannot begin to fathom how a person with a SCI would not express a strong interest in the subject. Of those who seem the most resistant to learning about and acknowledging this past are those interested in a cure to SCI. It is as though the efforts of disability rights activists are somehow not relevant. Yet the same people who focus on cure thoughtlessly use the same ramps and elevators activists fought for and enjoy many rights those before them did not enjoy.
Third, the people that devote their energies to a cure for SCI either knowingly or unknowingly accept a negative perception of wheelchair use. I see nothing wrong with using a wheelchair. This does not mean I want to be paralyzed. A wheelchair is an alternate means of locomotion. It is not superior or inferior to walking. It is simply different. People whose primary goal is a cure to SCI don’t accept or get this. Moreover, it appears to me many people that focus on a cure have the luxury of thinking about this lofty goal. By luxury that is they have the financial or familial support to seek out this goal. They are free to spend their money as they see fit. But I draw the line when this goal and its dehumanizing fund raising methods affect others with a SCI. If we allow and encourage the general pubic to donate money to a cure for SCI using dehumanizing images and beliefs how can we expect society to consider use equals, our civil rights the same? And what happens to the vast majority of people with a SCI that do not have financial or familial support? What are their lives like? In a word, grim. Most people with a high SCI end up in a nursing home. This is not a life but in some ways a death sentence. I don’t ever see people who focus on cure talking about those with a comparable injury that live in an institution—and this is the norm rather than the exception. These people, those without resources who have a SCI, are who I worry about and who can benefit the most from an inclusive society that acknowledges disability rights. To them and me a cure for SCI is just not relevant.
My views as expressed above make some people with a SCI and their loved ones very angry. I do not intentionally want to anger these people—they are just as free as I am to express their opinion. I respect them but that respect is not a two way street. It is not unusual for me to be racked over the coals when I am critical of the SCI cure industry and those that devote their time and energy toward that goal. More to the point, I don’t like being called an “asshole”, a “bad person”, have someone “pity” me, or be considered “narcissistic and bitter” by those interested in a cure. These are direct quotes from comments posted on this blog in 2007—one of the first times I commented about the spinal cord injury business and its larger ramifications. This moral outrage and personal condemnation puzzles me. Let me reiterate: I am not opposed to research for a cure to spinal cord injury. If others want to devote all their time and energy to this goal they are free to do so. If people want to spend a small fortune and go to China for what I consider dubious surgery they are free to do so. I depart from such people in a fundamental way: I have no interest in a cure to SCI. Am I selfish in thinking this way? Yes. In part, at issue is the meaning of the word cure. To me cure would be the eradication of a disease or condition. In terms of SCI, this is not going to happen any time soon, certainly not in my lifetime. Even the most ardent researcher will acknowledge this. Given this, my thinking is why bother getting involved. Is a little more movement or sensation really worth the time and risk or major surgery? For me the answer is a resounding no. I cannot walk but that is hardly a prerequisite for what I want to do with my life. I also have come to conclude that the major problems people with a SCI encounter are social. This more than any level of injury prevents people from leading a rich and full life after a SCI.
I am severely critical of the SCI cure industry and those people who that focus on a cure for three primary reasons. First, these people become media darlings, their lives reduced to nothing more and nothing less than a SCI. This is not only sad but dehumanizing. This stereotype, specifically the paralyzed person that ardently wishes to walk again, is effectively used to raise money (the Reeve Foundation exploited this to an extreme) and deflect attention from the issues that present the greatest obstacles. Those obstacles are the refusal to modify our social environment to be inclusive. It is far easier to donate money, feel good about this and forget that the law requires schools and other public places be accessible. This costs money most are unwilling to spend I in this manner. Current newspaper headlines about draconian budget cuts nationwide to disability services are proof people do not care one iota about the rights of people with a disability.
Second, Americans are not taught about the disability rights movement past or present. As a result civil rights and disability rights are not thought to be one in the same. This is a significant problem. While I can understand why those without a SCI don’t know the history of disability rights in America, I cannot begin to fathom how a person with a SCI would not express a strong interest in the subject. Of those who seem the most resistant to learning about and acknowledging this past are those interested in a cure to SCI. It is as though the efforts of disability rights activists are somehow not relevant. Yet the same people who focus on cure thoughtlessly use the same ramps and elevators activists fought for and enjoy many rights those before them did not enjoy.
Third, the people that devote their energies to a cure for SCI either knowingly or unknowingly accept a negative perception of wheelchair use. I see nothing wrong with using a wheelchair. This does not mean I want to be paralyzed. A wheelchair is an alternate means of locomotion. It is not superior or inferior to walking. It is simply different. People whose primary goal is a cure to SCI don’t accept or get this. Moreover, it appears to me many people that focus on a cure have the luxury of thinking about this lofty goal. By luxury that is they have the financial or familial support to seek out this goal. They are free to spend their money as they see fit. But I draw the line when this goal and its dehumanizing fund raising methods affect others with a SCI. If we allow and encourage the general pubic to donate money to a cure for SCI using dehumanizing images and beliefs how can we expect society to consider use equals, our civil rights the same? And what happens to the vast majority of people with a SCI that do not have financial or familial support? What are their lives like? In a word, grim. Most people with a high SCI end up in a nursing home. This is not a life but in some ways a death sentence. I don’t ever see people who focus on cure talking about those with a comparable injury that live in an institution—and this is the norm rather than the exception. These people, those without resources who have a SCI, are who I worry about and who can benefit the most from an inclusive society that acknowledges disability rights. To them and me a cure for SCI is just not relevant.
Monday, July 19, 2010
New York City Triathlon: Inspiring Trouble
The NYC Triathlon took place this weekend. News reports about the event are few and far between. The stories that did appear today all report that man collapsed near the finish line and is in critical condition. Bill Burke, the race director, has stated that twelve people were hospitalized, a number far fewer than expected. For those unfamiliar with the race, the competitors swim 1.5 kilometers, bike 40 kilometers, and run 10 kilometers. This was all done in humid 90 degree weather. Given the fact 3,000 people participated in the race the number of competitors hospitalized was very low. This fact does not sell newspapers. In the post race stories I read no mention is made of who won the race or even how many finished. However, many stories mentioned that in 2008 a racer died--the only death in the 10 year history of the race. The implications of the news reports is clear--the only thing news worthy about the race is those who collapse or die. Like the average reader of the news, I do not understand what drives a person to compete in a triathlon. This thought preoccupied my mind as I volunteered this weekend at the Vermont 100, one the oldest and most prestigious 100 mile races. Many things struck me about the Vermont 100 and the NYC Triathlon foremost among them the dichotomy in competitors with disabilities. The Vermont 100 had none, the NYC Triathlon had 71 competitors with a disability. I am not sure why the Vermont 100 does not draw any competitors with disabilities while the NYC Triathlon does. Perhaps the Vermont 100 is more hard core--few people are capable of completing the race and it is not an olympic event. The NYC Triathlon, though difficult, is not as daunting--an observation that only makes sense when discussing extreme events. Like the NYC Triathlon, the Vermont 100 does not draw much media attention. I wish it did as I was deeply impressed by the hundreds of volunteers that donated their time and energy and, especially, by those that ran the race.
I am going to follow news reports about both races in the coming days. I am particularly interested in the NYC Triathlon. In large part because of the controversy pertaining to paratriathlon competitors--the NYC race is the national paratriathlon championship and the only race to award spots for the world paratriathlon championships held in Budapest this September. The controversy I refer to is a new rule imposed by the International Triathlon Union. The new rule requires all visually impaired triathletes to wear blackout glasses during the race's running portion. The rule is supposed to "level the playing field" among the blind. This makes no sense to me. Just as there are multiple levels of paralysis that significantly affect one's physical function so too are there multiple levels of vision. I know in any race or adaptive sport that I, as a T-3 paraplegic compete in, am radically different from a T-12 paraplegic. I have no trunk control whereas as a T-12 paraplegic does. This represents a huge disadvantage for me. I assume this analogy extends to blind triathletes as well--a point made in a New York Times article that appeared before the race by Aaron Scheidies who has won four triathlon world titles. Schiedies is partially blind--he has 20/500 vision. Schiedies relies has a guide when he competes but also uses his partial vision to navigate the race. The complexities of paratriathlon rules would seem to me to be news worthy as it has larger cultural implications. Here I refer to the cultural ideal of a level playing field. In an effort to understand the rules of the paratriathlon I took a look at the USA Triathlon Competitive Rules. I am baffled by this 30 page plus document, six pages of which are devoted to "Rule Modifications for Para Triathletes". This document brought back memories from long ago when I played wheelchair basketball in college. All players had to be classified--a process that was exceedingly complex, fraught with subjective decisions, and highly political. I doubt much has changed. Indeed, I suspect classification and the rules governing competition are far more involved. Again, all this seems to be great fodder for the media. They can use the complexity of the paratriathlon to highlight just how difficult it is to establish a level playing field for athletic competition. However this has not taken place nor do I expect it will. I am pessimistic because stories about adaptive sports figures always rely on the lowest common denominator--an emotional or knee jerk reaction that reinforce preconceived ideas about disability. For adaptive athletes this firmly places them in the "inspirational" category. This demeaning characterization never seems to change. For instance, the NYC Triathlon race owner, John Korff has stated the following about paratriathlon competitors: "They are the toughest athletes in our race". Please spare me the platitudes. Triathlete competitors are all tough, no one group is tougher. Sadly, this sort of quote diverts attention from meaty issues such as rule changes that affect world class athletes such as Aaron Schiedies. Perhaps I am jaded--maybe a story about how Mr. Schiedies performed will appear that discusses how the rule changes affected him and 70 other competitors.
I am going to follow news reports about both races in the coming days. I am particularly interested in the NYC Triathlon. In large part because of the controversy pertaining to paratriathlon competitors--the NYC race is the national paratriathlon championship and the only race to award spots for the world paratriathlon championships held in Budapest this September. The controversy I refer to is a new rule imposed by the International Triathlon Union. The new rule requires all visually impaired triathletes to wear blackout glasses during the race's running portion. The rule is supposed to "level the playing field" among the blind. This makes no sense to me. Just as there are multiple levels of paralysis that significantly affect one's physical function so too are there multiple levels of vision. I know in any race or adaptive sport that I, as a T-3 paraplegic compete in, am radically different from a T-12 paraplegic. I have no trunk control whereas as a T-12 paraplegic does. This represents a huge disadvantage for me. I assume this analogy extends to blind triathletes as well--a point made in a New York Times article that appeared before the race by Aaron Scheidies who has won four triathlon world titles. Schiedies is partially blind--he has 20/500 vision. Schiedies relies has a guide when he competes but also uses his partial vision to navigate the race. The complexities of paratriathlon rules would seem to me to be news worthy as it has larger cultural implications. Here I refer to the cultural ideal of a level playing field. In an effort to understand the rules of the paratriathlon I took a look at the USA Triathlon Competitive Rules. I am baffled by this 30 page plus document, six pages of which are devoted to "Rule Modifications for Para Triathletes". This document brought back memories from long ago when I played wheelchair basketball in college. All players had to be classified--a process that was exceedingly complex, fraught with subjective decisions, and highly political. I doubt much has changed. Indeed, I suspect classification and the rules governing competition are far more involved. Again, all this seems to be great fodder for the media. They can use the complexity of the paratriathlon to highlight just how difficult it is to establish a level playing field for athletic competition. However this has not taken place nor do I expect it will. I am pessimistic because stories about adaptive sports figures always rely on the lowest common denominator--an emotional or knee jerk reaction that reinforce preconceived ideas about disability. For adaptive athletes this firmly places them in the "inspirational" category. This demeaning characterization never seems to change. For instance, the NYC Triathlon race owner, John Korff has stated the following about paratriathlon competitors: "They are the toughest athletes in our race". Please spare me the platitudes. Triathlete competitors are all tough, no one group is tougher. Sadly, this sort of quote diverts attention from meaty issues such as rule changes that affect world class athletes such as Aaron Schiedies. Perhaps I am jaded--maybe a story about how Mr. Schiedies performed will appear that discusses how the rule changes affected him and 70 other competitors.
Wednesday, July 14, 2010
Separate, Not Equal
I read the following quote on the wonderful blog Wheelchair Dancer:
"I think disableds live with a lot of separate but equal. You know the
accessible entrance round the back, by the trash cans. The separate
and ineffective transit systems, because the mass transit is
inaccessible. I think of our lives as having a parallel track, one
which we and only we are able to see. On the good side, this parallel
track is the place of disability history and culture. On the less
appealing side, it is the place of isolation and frustration with a
world of environmental and attitudinal barriers. And somewhere in
there, I hear my voice, artificially bright and cheery -- I'm striving
for lightness and neutrality, but what I really want to say is
unprintable -- saying, "No, don't worry. I've got it. I just have to
do it differently, in my own way." I'm trying to convince the person
in front of me that what I am doing is valid and effective for me.
"No, honestly, I don't need your help. Thank you, though."
This struck a chord with me because despite my moniker bad cripple I am really not such a bad guy. I don't like to purposely hurt people. I do my best to not insult others. I am very polite with strangers. I consider myself a dedicated teacher, willing to go out my way to help students. But there is one thing I cannot tolerate--demeaning attitudes and a subservient social status based on nothing more and nothing less than the fact I use a wheelchair. Hence long ago I gave up trying to put others at ease if my mere presence was upsetting. I forcefully assert my civil rights when they are violated. I do this in a firm but polite manner that some have told me is a bit intense. I really don't care to engage those that want to help me when I obviously need no help. As a result I think I have perfected the "no thank you" that translates into an impolite buzz off. I have no hesitation to glare at people when I catch them staring at me. When the "special elevator" is filled with trash or locked I am not happy. I let the powers that be know it. I do my best to makes sure this seemingly meaningless problem is resolved.
What is the point of the above descriptions of my behavior? Reading the quote by Wheelchair Dancer made me feel happy. It is good to know I am not alone. For this is exactly how I am made to feel when my civil rights are violated--alone and singularly unusual. I know I am not the only wheelchair user in the world. I am not the only person inconvenienced. But this is what people desperately want to think--that people with disabilities are lone individuals, narcissists that unreasonably demand the world be made accessible. You know who I am talking about, people like Ron Paul and school boards that approve draconian budget cuts to special education. Or how about the New Jersey Governor who eliminates books for the blind? This is not what leadership entails but rather narrow minded thinking that hurts those most vulnerable. It is easy and dangerous to think this way. I like to remind people that we cripples are the only minority group that can be joined in the blink of an eye. This is a danger but a remote one. The real danger is social invisibility that is sanctioned by American culture. We crippled people are out of sight and out of mind. Hence, why spend the money on "special" education and making the social environment accessible is an easy argument to put forth. It is however a sound bite argument when put to the test utterly fails. But we live in a sound bite world that ignores and does educate people about disability history and disability rights. No one asks why do we not commonly see people with a disability in the work force, at school, and on mass transportation systems nationwide? I can tell you why--American society is hostile to the presence of people with disabilities. We choose not to employ people with disabilities. We choose not to put wheelchair lifts on buses. We choose to construct homes that are not accessible. We choose to provide substandard education to those with disabilities. We choose to create ineffective and costly paratransit systems. We choose to segregate children with disabilities in resource rooms. All these are choices we as Americans have made. We should be ashamed. We are needlessly destroying lives, an untold number of people have been lost. This is a social tragedy. And today, a gloomy rainy day here in New York I do not feel alone. I know Wheelchair Dancer is out there fighting the good fight. You go girl! Let em have it.
"I think disableds live with a lot of separate but equal. You know the
accessible entrance round the back, by the trash cans. The separate
and ineffective transit systems, because the mass transit is
inaccessible. I think of our lives as having a parallel track, one
which we and only we are able to see. On the good side, this parallel
track is the place of disability history and culture. On the less
appealing side, it is the place of isolation and frustration with a
world of environmental and attitudinal barriers. And somewhere in
there, I hear my voice, artificially bright and cheery -- I'm striving
for lightness and neutrality, but what I really want to say is
unprintable -- saying, "No, don't worry. I've got it. I just have to
do it differently, in my own way." I'm trying to convince the person
in front of me that what I am doing is valid and effective for me.
"No, honestly, I don't need your help. Thank you, though."
This struck a chord with me because despite my moniker bad cripple I am really not such a bad guy. I don't like to purposely hurt people. I do my best to not insult others. I am very polite with strangers. I consider myself a dedicated teacher, willing to go out my way to help students. But there is one thing I cannot tolerate--demeaning attitudes and a subservient social status based on nothing more and nothing less than the fact I use a wheelchair. Hence long ago I gave up trying to put others at ease if my mere presence was upsetting. I forcefully assert my civil rights when they are violated. I do this in a firm but polite manner that some have told me is a bit intense. I really don't care to engage those that want to help me when I obviously need no help. As a result I think I have perfected the "no thank you" that translates into an impolite buzz off. I have no hesitation to glare at people when I catch them staring at me. When the "special elevator" is filled with trash or locked I am not happy. I let the powers that be know it. I do my best to makes sure this seemingly meaningless problem is resolved.
What is the point of the above descriptions of my behavior? Reading the quote by Wheelchair Dancer made me feel happy. It is good to know I am not alone. For this is exactly how I am made to feel when my civil rights are violated--alone and singularly unusual. I know I am not the only wheelchair user in the world. I am not the only person inconvenienced. But this is what people desperately want to think--that people with disabilities are lone individuals, narcissists that unreasonably demand the world be made accessible. You know who I am talking about, people like Ron Paul and school boards that approve draconian budget cuts to special education. Or how about the New Jersey Governor who eliminates books for the blind? This is not what leadership entails but rather narrow minded thinking that hurts those most vulnerable. It is easy and dangerous to think this way. I like to remind people that we cripples are the only minority group that can be joined in the blink of an eye. This is a danger but a remote one. The real danger is social invisibility that is sanctioned by American culture. We crippled people are out of sight and out of mind. Hence, why spend the money on "special" education and making the social environment accessible is an easy argument to put forth. It is however a sound bite argument when put to the test utterly fails. But we live in a sound bite world that ignores and does educate people about disability history and disability rights. No one asks why do we not commonly see people with a disability in the work force, at school, and on mass transportation systems nationwide? I can tell you why--American society is hostile to the presence of people with disabilities. We choose not to employ people with disabilities. We choose not to put wheelchair lifts on buses. We choose to construct homes that are not accessible. We choose to provide substandard education to those with disabilities. We choose to create ineffective and costly paratransit systems. We choose to segregate children with disabilities in resource rooms. All these are choices we as Americans have made. We should be ashamed. We are needlessly destroying lives, an untold number of people have been lost. This is a social tragedy. And today, a gloomy rainy day here in New York I do not feel alone. I know Wheelchair Dancer is out there fighting the good fight. You go girl! Let em have it.
Monday, July 12, 2010
Continue: A Good Physical Rehabilitation Idea
continue from Jeffrey Rosenbluth on Vimeo.
I thoroughly enjoyed this short film about an myriad of adaptive sports and outdoor activities. The film, much to my chagrin, was made by Jeffrey Rosenbluth, a doctor who specializes in spinal cord injury rehabilitation. My personal bias would have prevented me from ever guessing an MD much less one that specializes rehabilitation made the film. Everyone knows rehabilitation medicine is a dead end medical career. There is not much positive I can say about physical rehabilitation aside from the fact that many physical and occupational therapists are very attractive and dedicated women who do an amazing job. They are the only inspiring figures in rehabilitation, a field I passed through long ago and hope to never return. Rehabilitation has changed radically since I experienced it in the late 1970s. Back then doctors, nurses, therapists, and social workers were struggling to figure out exactly what rehabilitation entailed. Adaptive equipment was primitive at best and choices severely limited. Yet there was a large measure of excitement. People with spinal cord injuries were expected to survive and thrive after injury. Wheelchair technology was about to explode with a dizzy array of options once the monopoly enjoyed by Everest & Jennings was broken. Adaptive sports gear was being created and there was real hope for the future. I was driven to work exceptionally hard in rehabilitation. I worked hard for a simple reason--rehabilitation is deeply depressing. One must work long and hard to relearn how to do the ordinary. This hurts one's ego and can be a shattering experience. Add in the fact rehabilitation settings are grim. Back in the 1970s rehabilitation was often done in an acute care hospital. A few rehabilitation hospitals existed but as far as I recall rehabilitation floors were common. This is where I experienced rehabilitation. I was the only young person surrounded by elderly people may of whom had strokes. Such a setting was not a bad place. I was scared to death and driven to get out.
Much has changed in rehabilitation--a veritable revolution has taken place. Yet I wonder if all the changes are positive. In the 1970s rehabilitation lasted as long as it was deemed necessary. Today, health insurance dictates care and the sort of adaptive equipment a person will use. This sends shivers down my spine. The durable medical goods industry is populated by crooks that sell inferior products to newly paralyzed people who know nothing about wheelchairs they will use. Rehabilitation setting have also changed. Gone are the rehabilitation floors in acute care hospitals. They have been replaced by rehabilitation centers in rural or suburban areas that are quite pretty. Gone by extension is the fear I felt provided by a grim social and physical setting. Thus I think rehabilitation hospitals provide social cocoons where one can, if well insured, hide from the real world. I cannot blame people though--the real world is a hostile place to people with disabilities.
The above memories were triggered by the film Continue. The film also gave me hope that at some rehabilitation centers appear to get the physical and social consequences to paralysis. Rosenbluth works at the University of Utah and directs the acute rehabilitation program. There he has set up TRAILS: Theraputic Recreation and Independent Lifestyles. I am not a fan of cute acronyms but I do like what TRAILS seeks to accomplish: the return to a healthy, rich and full life via recreational activities. For a newly paralyzed person they experience a shock to body and mind but it is the mind that really gets fucked. The mind more than the body must learn to adapt. People need to learn how to reject the stigma associated with using a wheelchair and assert their rights as a human being. This is not easy but I can readily imagine this transition being assisted by recreational activities. The feeling of equality is in part what draws me to adaptive sports such as skiing and kayaking. This feeling is liberating and for a newly paralyzed person I would imagine this experience can have profound and long lasting consequences. It is a return to being "normal", that is being an ordinary person. Society denies we paralyzed people our ability to be ordinary--we are reduced to stereotypes that belittle and demean us. Our choices are limited--at one extreme we are portrayed as angry or bitter and at the other end of the spectrum we are lauded as heroes that overcome paralysis. The truth is we are just like anyone else except we cannot walk, a physical deficit that leads to social denigration. I for one reject this inferior social status and hope through the program created by Rosenbluth newly paralyzed people will come to the same conclusion.
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