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.
Friday, July 23, 2010
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.
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