Okay, I am steeling the title of this post from Bobby McFerrin's well-known song. I love this song as I take worrying to an Olympic level. I am in other words a world class worrier. My worries have worries. I worry if I am not worrying. I worry about everything. The apple does not fall far from the tree--my father was a gifted worrier too. One thing I do not worry about it is being happy. Sure the last six months have been very hard. Yes, I worried I was slipping into an abyss of depression. Not so now. My good days far out number the bad. I am verging on healed and am busy making plans for the future. But prior to my wound I would classify as a happy person. Yes, worriers can be happy. I was not always a happy person by nature. My happy view of life was one of the few good by products of divorce. I was always a planner--I planned years in advance, set markers to reach toward given goals and was driven. I remain a driven person but do not plan my life or set rigid goals to reach. Raising my son taught me so much about life and happiness. But here I am meandering too far from what I want to write about, specifically the simple fact I am a happy person. I love my life. It is rich and full. I get great joy from teaching, writing, sports, skiing and kayaking, and enjoy the company of my family and friends. Beyond my own happy existence, I can readily report that most people I know with a disability are also happy. Sure we people with a disability rail against social injustice but separate this from our overall happiness.
Being happy and having a disability are thought to be mutually exclusive. The psychological and medical literature is clear--we people with a disability are not supposed to be happy yet we are. Of course such sentiments are buried under academic jargon. But I assure you the general idea that disability excludes happiness dominates social discourse. It is revealed in headlines in newspapers, stories of overcoming disability, and other archetypes associated with disability. The general belief is that the worse a disability the more likely it is for that person to be unhappy. I think this notion is grossly wrong. Happiness and disability have nothing to do with one another. If you were miserable before being disabled I bet the odds are good the same person will be miserable after they are disabled. This reminds me that I was once told by a friend that I was a wise ass before I was crippled and that I remain a wise ass. Disability did not change me. The point is happiness and relating it to disability is misleading. Misleading in the extreme. Happiness or lack of it is not the problem people with disability encounter. No, our problem is social isolation and a refusal on the part of society to negotiate or accommodate our difference. In my case, the country remains largely inaccessible to wheelchairs. There is no real social commitment to making the country accessible. Sure we have the ADA that attempts to force businesses and school to be accessible but no one aside from people with a disability really care about access. Like it or not access remains poorly understood and under appreciated. I often see access as the first line item cur from limited budgets. People simply do not care nor do they want to spend any money on said access.
Social isolation and happiness are two very different things. Social isolation can lead and often does to depression. But no one asks why are people with a disability socially isolated to begin with. These thoughts were prompted by an article in the British Journal of Medicine. The article concerned the "well being" and "happiness" of people who are locked in or experience locked in syndrome. If you want to understand what it is like to be locked in read Jean-Dominique Bauby's poetic Diving Bell and the Butterfly. Few books move me to tears but his book did. I cannot imagine what it would be like to be locked in--unable to move at all with one's mind intact. Of course some people also look at me and think the same thing--I cannot imagine being paralyzed. As I often joke with others I cannot recommend the experience. But paralysis, even locked in syndrome, has nothing to do with happiness. And the researchers who wrote in the British Journal of Medicine seem shocked. People with locked in syndrome are happy. The majority of people with locked in syndrome are happy. Imagine that--happy disabled people. Happy severely disabled. Its a miracle! No, its not. The shocker to me is that people, your average person as well as people in the health care profession, do not get it--yes we people with a disability are happy. Oh the nerve! I guess we people with a disability are supposed to be miserable. You know pine to be "normal" again. Well my idea of normal includes paralysis as an integral part of life. Do I want to be paralyzed? No. But who among us considers our bodies ideal. Men often wish they were stronger, more fit or had more hair. Women want to be taller, slender and have a larger bust. Only a tiny percentage of us meet the cultural ideals of body types. We simply make do with our strengths and weakness. In this we people with a disability are identical to our peers who are bipedal. We do the best with what we have to work with. I have severe spasms. I use those spasms to my advantage. When I transfer I use the spasms to pull my wheelchair toward me. I thus do not really need brakes on my wheelchair. I could offer many other examples but I do not want to be labor the point. We people with a disability are no different than anyone else. We can be happy, sad, in love, alone, and experience anything your average bipedal person does. The problems we have, the physical ones are obvious and many like me let their freak fly. If there is one good thing about having a disability it is that I do not worry about what others think of me. The odds, I know, are very good, strangers do not think much of my existence. This is liberating in many ways--I am free to be who I am. Indeed, it is a position of power in some ways. People like Ed Roberts knew this and called it cripple power. Hence we all have the power to be happy--disabled and non disabled alike.
AAPD Oblivious to Disability?
Wednesday, February 23, 2011
I just got an email that truly pissed me off. The American Association of People with Disabilities (AAPD) invited me to the 2011 Gala in Washington DC. Last year I thought about going. This year no such thoughts entered my mind. In fact the mere email notice made me mad. Why am I mad? How about this--the AAPD Image Award goes to to the cast and creative team behind the television show Glee. Glee? Glee? No it cannot be Glee--you know the show where Arnie dreams of walking and portrays an image of disability that is one gross stereotype after another. And yes the same Arnie portrayed by an actor without a disability. A modern day equivalent of white people putting on black face circa 1930. Were the people at the AAPD smoking dope when they made this decision? Maybe they dropped some acid. How can the AAPD be oblivious to the fact Glee has enraged people with disabilities. Has the AAPD read anything about the outrage directed toward the show Glee? I am far from alone in expressing my outrage at the way people with disabilities are portrayed on Glee.
If the Glee reference were not enough I was more outraged by the list of speakers. A few token crips are on the agenda--no surprise there. The AAPD tagged Stevie Wonder and Bob Dole among others. But also speaking is Gerald Arpey, the President and CEO of American Airlines. Yes , the CEO of a major American airliner is asked to speak. This person works in an industry that has a long history of discrimination against people with disabilities. Why just last year the DOJ reported complaints against the big American carriers, airlines like American, rose sharply. Come on, how oblivious can the AAPD be? I do not expect much from such galas. They are all about show not substance But the AAPD must make some effort to ground such a gala in reality. Of course prominently displayed in the email was the offer of sponsorships. Opportunities are available from $1,000 to $250,000. Yikes that is a lot of money. Instead of patting themselves on the back fro a job well done perhaps the AAPD could look into the following states:
California: Budget cuts threaten developmentally disabled children. See also ADAPT protests at what they dubbed Arnieville.
South Carolina: An all out effort is being made to reduce disability services.
Illinois: Budget cuts across the board that affect elderly and disabled people. Some worry entire programs will be eliminated.
I could go on state by state. Who gets hurt? People with no voice, no connected lobbyists, those that can least afford to suffer, those most in need. I have yet to read one thing the AAPD has done to stop the budget cuts that hurt people with disabilities. What I wonder were organizers thinking? It is obvious the AAPD is divorced from the reality most people with disabilities experience. Anyone with an ounce of common sense would not invite the cast of Glee or CEO of any American airline. But hey what do I know. I have only been thinking and writing about disability rights since Bob Murphy put the idea in my brain shortly after I was paralyzed. His book, The Body Silent, changed my life. To me, this is only another example that those in Washington DC politics are a class apart from the average citizen. But for now I am just mad. Furious in fact. The AAPD can go kiss my skinny Irish ass.
If the Glee reference were not enough I was more outraged by the list of speakers. A few token crips are on the agenda--no surprise there. The AAPD tagged Stevie Wonder and Bob Dole among others. But also speaking is Gerald Arpey, the President and CEO of American Airlines. Yes , the CEO of a major American airliner is asked to speak. This person works in an industry that has a long history of discrimination against people with disabilities. Why just last year the DOJ reported complaints against the big American carriers, airlines like American, rose sharply. Come on, how oblivious can the AAPD be? I do not expect much from such galas. They are all about show not substance But the AAPD must make some effort to ground such a gala in reality. Of course prominently displayed in the email was the offer of sponsorships. Opportunities are available from $1,000 to $250,000. Yikes that is a lot of money. Instead of patting themselves on the back fro a job well done perhaps the AAPD could look into the following states:
California: Budget cuts threaten developmentally disabled children. See also ADAPT protests at what they dubbed Arnieville.
South Carolina: An all out effort is being made to reduce disability services.
Illinois: Budget cuts across the board that affect elderly and disabled people. Some worry entire programs will be eliminated.
I could go on state by state. Who gets hurt? People with no voice, no connected lobbyists, those that can least afford to suffer, those most in need. I have yet to read one thing the AAPD has done to stop the budget cuts that hurt people with disabilities. What I wonder were organizers thinking? It is obvious the AAPD is divorced from the reality most people with disabilities experience. Anyone with an ounce of common sense would not invite the cast of Glee or CEO of any American airline. But hey what do I know. I have only been thinking and writing about disability rights since Bob Murphy put the idea in my brain shortly after I was paralyzed. His book, The Body Silent, changed my life. To me, this is only another example that those in Washington DC politics are a class apart from the average citizen. But for now I am just mad. Furious in fact. The AAPD can go kiss my skinny Irish ass.
Nearing the End
I was at wound care yesterday. The wound continues to make progress. I have great granulation and the wound is fully filled in. After much discussion the wound vacuum is off or as they dryly put we discontinued therapy. A happy day indeed! I referred to the wound vacuum as my ball and chain. It was necessary and speeded healing but the company that has a monopoly on the wound vacuum market, KCI, was a nightmare to deal with. KCI is the perfect representation of evil, the perfect example of all that is wrong with corporate America. Regardless I am wound vacuum free. This does not mean the wound is healed. The skin needs to grow back and close the last part of the wound, around the size of a fifty cent piece. I hope to be free of wound care in a month. For now I am changing the dressing daily and will have wound care come once week to measure the wound and confirm it is getting smaller. As my brother told me on the way home from seeing the doctor, "don't fuck it up now". Words of wisdom and colorful too! I was warned by him and the surgeon--do not sit up too much. There is more healing to be done. To insure I am careful I remind myself that if I wound that wound today I would be very upset. I want to be healed and never ever worry about such problems again.
I have learned a hard lesson--the hardest. Skin care prevention is of paramount importance. Never in my wildest dreams did I ever think it would take six months to heal a wound. Never did I envision myself stuck in bed and isolated. Never did I dream I would miss the ski season. Denial is a powerful emotion. In fact in part it got me through this extended nightmare. One thing has dominated my thoughts as I near the end of my long journey in wound care. Helping others avoid this problem or helping those cope with an existing skin problem. I will give the surgeon a copy of my posts and hope there is something I can do. No one should be forced to endure what I have. It is a form of cruel and unusual punishment to be stuck in one's home for months on end. Worse yet some, many actually, are forced into nursing homes for the exact same problem--a far worse fate than I experienced. Something needs to be done to help those in similar circumstances. Also education in the form of prevention must be given higher priority. High end cushions need to be given to all paralyzed people and those at risk. This would not only be good for people but save valuable health care dollars. We just need the vision to make this happen.
I have learned a hard lesson--the hardest. Skin care prevention is of paramount importance. Never in my wildest dreams did I ever think it would take six months to heal a wound. Never did I envision myself stuck in bed and isolated. Never did I dream I would miss the ski season. Denial is a powerful emotion. In fact in part it got me through this extended nightmare. One thing has dominated my thoughts as I near the end of my long journey in wound care. Helping others avoid this problem or helping those cope with an existing skin problem. I will give the surgeon a copy of my posts and hope there is something I can do. No one should be forced to endure what I have. It is a form of cruel and unusual punishment to be stuck in one's home for months on end. Worse yet some, many actually, are forced into nursing homes for the exact same problem--a far worse fate than I experienced. Something needs to be done to help those in similar circumstances. Also education in the form of prevention must be given higher priority. High end cushions need to be given to all paralyzed people and those at risk. This would not only be good for people but save valuable health care dollars. We just need the vision to make this happen.
A Fate I Escaped
Sunday, February 20, 2011
These last six months have been very hard. First, I was in the hospital and endured two bloody debridements. Second, I was on enforced bed rest and dependent upon my family to care for me for months. These two major events say nothing of the tremendous expense wound care has involved. The biggest expense was the purchase of a clinitron bed and the extended rental of a KCI wound vacuum. Even with all this I consider myself very lucky. I had a family that sacrificed and cared for me in my own home. For this, I am eternally grateful. But what I am most relieved about is that I am home and have been since I was released from the hospital. Accordingly, I am lucky times two because I escaped a nursing home. Most paralyzed people are not so lucky. Nursing homes are a necessary evil. Most such institutions are a place people go to die. Death in my estimation takes place long before the heart stops beating. Death in institutions is caused by inertia or lackthereof. The routine, the needs of the institution are paramount. No action takes place, indeed inaction is desired. Routine is serene and secure. People that rock the boat, ignore the routine are trouble. The routine is mind numbing if not deadly. What is worse, far more troubling, is that the age of people entering nursing homes is dropping. Paralyzed people often end up in nursing homes. Look at the history of the disability rights movement--some of the biggest advances originated in the halls of nursing home pushed by young people. Young people locked away and unable to have a social life. This is how the battle for mass transportation, specifically buses in Denver, started and spread across the country int he late 1970s.
The above thoughts came to mind when I read an article in the Houston Chronicle about the number of people with disabilities now living in nursing homes. According to the article, people age 31-64 have entered nursing homes at a higher rate than those 65 or older. People under 65 now constitute 14% of the nursing home population. I find this figure stunning, shocking in fact. Why do people under 65 end up in a nursing home? Simple: money. Most people cannot afford home care services. Young people end up in nursing homes because of traumatic injuries while others are institutionalized because they have chronic conditions. Enduring life in a nursing home at a young age is for me unimaginable. I have surely struggled since I have been stuck in bed and isolated. However my struggles pale in comparison to a person my age that finds himself or herself in a nursing home. I find it hard to fathom why we do not rely more on home based care. It is a far more humane way to live. One can maintain a level of dignity the best institution in the world cannot provide. I think it is not in dispute that community based long term care is the ideal. However this ideal is not well funded, long waiting lists are common in most states and the nursing home industry yields great clout within political circles. We as a people should be outraged. We should demand appropriate home based care that is not only available but affordable. No such demand exists. Sure groups like ADAPT forcefully push for community based care but how many Americans even know ADAPT exists. Sadly, not many. Part of the problem is that people do not want to consider much less seriously think of life with a disability. Like it not though most of us who live long enough will have to cope with some sort of disabling condition. What is also not considered is the social isolation that is often associated with disability. Why are people with a disability isolated? American society both socially and practically is not designed to be inclusive. Stigma is still attached to disability in spite pf the fact the ADA was passed 20 years ago.
I will be the first person to admit the social plight of people with a disability is markedly better than it was 30 years ago when I was paralyzed. This is a far cry from saying I am considered equal to my fellow Americans that wake up in the morning and stand up. Wheelchair use and disability in general remains a quasi tragedy in the estimation of most people. See my last post about Mr. Lakeman int he NY Daily News to see how this message is delivered in a routine everyday fashion. It is not hard for me to conclude we can reduce the number of people, young and old alike, in nursing homes if we valued the elderly and people with disabilities. The fact is we do not value disabled lives or the lives of the elderly. If we did, adequate social supports would exist. Supports that would have made my fear of a nursing home a thing of the past.
The above thoughts came to mind when I read an article in the Houston Chronicle about the number of people with disabilities now living in nursing homes. According to the article, people age 31-64 have entered nursing homes at a higher rate than those 65 or older. People under 65 now constitute 14% of the nursing home population. I find this figure stunning, shocking in fact. Why do people under 65 end up in a nursing home? Simple: money. Most people cannot afford home care services. Young people end up in nursing homes because of traumatic injuries while others are institutionalized because they have chronic conditions. Enduring life in a nursing home at a young age is for me unimaginable. I have surely struggled since I have been stuck in bed and isolated. However my struggles pale in comparison to a person my age that finds himself or herself in a nursing home. I find it hard to fathom why we do not rely more on home based care. It is a far more humane way to live. One can maintain a level of dignity the best institution in the world cannot provide. I think it is not in dispute that community based long term care is the ideal. However this ideal is not well funded, long waiting lists are common in most states and the nursing home industry yields great clout within political circles. We as a people should be outraged. We should demand appropriate home based care that is not only available but affordable. No such demand exists. Sure groups like ADAPT forcefully push for community based care but how many Americans even know ADAPT exists. Sadly, not many. Part of the problem is that people do not want to consider much less seriously think of life with a disability. Like it not though most of us who live long enough will have to cope with some sort of disabling condition. What is also not considered is the social isolation that is often associated with disability. Why are people with a disability isolated? American society both socially and practically is not designed to be inclusive. Stigma is still attached to disability in spite pf the fact the ADA was passed 20 years ago.
I will be the first person to admit the social plight of people with a disability is markedly better than it was 30 years ago when I was paralyzed. This is a far cry from saying I am considered equal to my fellow Americans that wake up in the morning and stand up. Wheelchair use and disability in general remains a quasi tragedy in the estimation of most people. See my last post about Mr. Lakeman int he NY Daily News to see how this message is delivered in a routine everyday fashion. It is not hard for me to conclude we can reduce the number of people, young and old alike, in nursing homes if we valued the elderly and people with disabilities. The fact is we do not value disabled lives or the lives of the elderly. If we did, adequate social supports would exist. Supports that would have made my fear of a nursing home a thing of the past.
Tabloid Propaganda and Paralysis
Thursday, February 17, 2011
Like many men, I read tabloid sports sections. In New York that means I read the NY Post and NY Daily News. The writing quality is not impressive. I am certainly not breaking any new ground here with this observation. Sports reporting relies heavily on well worn themes--praising the under dog, over coming injury, winning in spite of long odds etc. Redemption and overcoming are constants and often the subject of special interest pieces. A few weeks ago I read one such story. The story, "A Life Back on Track" February 6 NY Daily News, annoyed me to no end. The article by Wayne Coffey was about Andrew Lakeman. Lakeman was a New York based jockey. I use the past tense because in 2007 he suffered a bad spill at the track--that is his horse fell and " his body was crushed as if it were a potato chip". Lakeman suffered a complete spinal cord injury. The tone of this article is so over the top it is hard to believe. For example, Coffey wrote: "It's almost impossible to imagine anyone overcoming more than Andrew Lakeman, who knows little of what the future will bring beyond this: he will spend every day of it in a motorized wheelchair, paralyzed from the chest down". Please enter here soaring melodramatic music. I do not mean to diminish or belittle Mr. Lakeman. Any paralyzing injury requires a tremendous adjustment and time to accept. I do not nor I am sure does Mr.. Lakeman recommend the experience. But what the article does not delve into at all is why--why is paralysis so difficult. Why is it "impossible to imagine" how a person "overcomes" such an injury. I would maintain the hardest part about a paralyzing injury is not paralysis but rather the way society responds to paralyzed people. The article in the NY Daily News highlights the inherent social problems Mr. Lakeman will encounter. I find this ironic in that the article also chronicles with Mr. Lakeman's struggle with alcohol and drug abuse as well as bulimia. All these issues are handled well and respectfully. If one reads the article carefully it is obvious paralysis is terrible, a fate worse than death.
There is no way Mr. Lakeman can be average, normal if you will. There is no way he could respond with nuance to his disability and spinal cord injury. His friend, Kristina Dupps, a former trainer makes this clear. She is quoted as saying: "He's either going to shoot himself or make something good of his life". The fact is reality for people with spinal cord is somewhere between. It is not a world of extremes. What is extreme is the social reaction to Mr. Lakeman's injury. He apparently has the choice of giving up, committing suicide, something he considered, or overcoming his disability. Mr. Lakeman is no longer human for he has entered the dreaded territory i refer to as the "Super Crip" image. I have railed against this concept again and again. The "super crip" notion is a gross generalization that defies reality. It is also inherently dehumanizing. A paralyzed person can not lead a normal life and is reduced to the "super crip" who puts all those other weak willed lazy crippled people to shame. Mr. Lakeman is a hero! He refuses to give up. He wants to work at the track and train horses. Wow, is this not amazing! He is a saint because he is "happy to be doing what I'm doing now. I really would't change a thing. This is what I love". My question is simple: what other choice does Mr. Lakeman have. He is a good horseman and has spent his entire life around the track. It seems to me becoming a trainer or selecting any of a number of other jobs at the track is pretty reasonable response.
What bothers me about articles such as the one described above are the assumptions made and not so subtle subtext. Life after paralysis unbearably hard and an ordinary life is not possible. Those that attain such lofty goals such as a job and a complete life are hailed as super humans. Mr. Lakeman I am sure would agree is as flawed as he was before he was paralyzed. He is no different than any other trainer that can walk. Here is fascinating fodder for an article. How many paralyzed trainers are there in New York and elsewhere? What obstacles did they encounter at the track. Was it hard for them to find trainers willing to trust them with horses that routinely cost hundreds of thousands of dollars. I can think of one other name horse trainer based in California who trained Derby horse Brother Derek. Is there an association of paralyzed trainers? Mr. Lakeman trains one horse. How is his quest for owners and other horses going. Such questions are not addressed. Instead we get unfortunate lines such as: "Andrew Lakeman doesn't ride horses any more. He trains them. He moves his chair onto the platform and is hoisted up, and rolls forward and turns on the ignition [to his car]. For Andrew Lakeman, everything is new, his life free of alcohol and bulimia and free of limitations, too, no matter what the wheelchair suggests".
What exactly does a wheelchair suggest? To me it signals Mr. Lakeman simply moved on after a severe injury. It means he has a job and, like others trainers works long, hard, if not brutal hours with high strung animals that are worth a small fortune. The pressure Mr. Lakeman deals with is intense. But this is not the message the general reader will come away with. Mr. Lakeman is reduced to a stereotype--the "super crip". Thus the real hard questions are not addressed. Why are people with disabilities routinely unemployed? Why are housing options severely limited? Why is independence a struggle? Why is mass transportation still difficult to access twenty years after the ADA was passed? These are issues passed over and deflected. Coffey wrote that Mr. Lakeman "knew he wanted to be independent--he rejected the idea of returning to England because he did not want his parents to care for him:". This begs the question why Mr. Lakeman could not be independent in the United States. What support services were available? If there were none why was this the case. And more to the point why does it seem as though accepting such dependence was a reasonable response to paralysis. Like every other american I know, we fiercely value our independence.
Do not take my words as a critique of Mr. Lakeman. He works in a tough industry. The race track is littered with people who have substance abuse problems, marriages fail often under the stress, and a nomadic or seasonal lifestyle is the norm. While majestic, thoroughbred horses require intense effort to maintain at peak performance. The hours people work at the track are long and hard. Success at the track is based on one thing--wins. Those wins are hard to come by. If I were Mr. Lakeman I would be delighted by the article in question. It raised his profile and he may attract the interest of a horse owner. But I am not Mr. Lakeman. I am not a novice to paralysis and have spent 30 years thinking about the social ramifications of paralysis. I utterly reject dominant sociocultural norms associated with disability. I hope with time a more nuanced understanding of disability will emerge. For that to happen the content of articles such as the one discussed need to shift fundamentally. The questions asked need to be about the social implications of disability and not rely on outdated stereotypes. Such articles may sell papers but are ultimately destructive to the people with disabilities that merely want to lead an ordinary life.
There is no way Mr. Lakeman can be average, normal if you will. There is no way he could respond with nuance to his disability and spinal cord injury. His friend, Kristina Dupps, a former trainer makes this clear. She is quoted as saying: "He's either going to shoot himself or make something good of his life". The fact is reality for people with spinal cord is somewhere between. It is not a world of extremes. What is extreme is the social reaction to Mr. Lakeman's injury. He apparently has the choice of giving up, committing suicide, something he considered, or overcoming his disability. Mr. Lakeman is no longer human for he has entered the dreaded territory i refer to as the "Super Crip" image. I have railed against this concept again and again. The "super crip" notion is a gross generalization that defies reality. It is also inherently dehumanizing. A paralyzed person can not lead a normal life and is reduced to the "super crip" who puts all those other weak willed lazy crippled people to shame. Mr. Lakeman is a hero! He refuses to give up. He wants to work at the track and train horses. Wow, is this not amazing! He is a saint because he is "happy to be doing what I'm doing now. I really would't change a thing. This is what I love". My question is simple: what other choice does Mr. Lakeman have. He is a good horseman and has spent his entire life around the track. It seems to me becoming a trainer or selecting any of a number of other jobs at the track is pretty reasonable response.
What bothers me about articles such as the one described above are the assumptions made and not so subtle subtext. Life after paralysis unbearably hard and an ordinary life is not possible. Those that attain such lofty goals such as a job and a complete life are hailed as super humans. Mr. Lakeman I am sure would agree is as flawed as he was before he was paralyzed. He is no different than any other trainer that can walk. Here is fascinating fodder for an article. How many paralyzed trainers are there in New York and elsewhere? What obstacles did they encounter at the track. Was it hard for them to find trainers willing to trust them with horses that routinely cost hundreds of thousands of dollars. I can think of one other name horse trainer based in California who trained Derby horse Brother Derek. Is there an association of paralyzed trainers? Mr. Lakeman trains one horse. How is his quest for owners and other horses going. Such questions are not addressed. Instead we get unfortunate lines such as: "Andrew Lakeman doesn't ride horses any more. He trains them. He moves his chair onto the platform and is hoisted up, and rolls forward and turns on the ignition [to his car]. For Andrew Lakeman, everything is new, his life free of alcohol and bulimia and free of limitations, too, no matter what the wheelchair suggests".
What exactly does a wheelchair suggest? To me it signals Mr. Lakeman simply moved on after a severe injury. It means he has a job and, like others trainers works long, hard, if not brutal hours with high strung animals that are worth a small fortune. The pressure Mr. Lakeman deals with is intense. But this is not the message the general reader will come away with. Mr. Lakeman is reduced to a stereotype--the "super crip". Thus the real hard questions are not addressed. Why are people with disabilities routinely unemployed? Why are housing options severely limited? Why is independence a struggle? Why is mass transportation still difficult to access twenty years after the ADA was passed? These are issues passed over and deflected. Coffey wrote that Mr. Lakeman "knew he wanted to be independent--he rejected the idea of returning to England because he did not want his parents to care for him:". This begs the question why Mr. Lakeman could not be independent in the United States. What support services were available? If there were none why was this the case. And more to the point why does it seem as though accepting such dependence was a reasonable response to paralysis. Like every other american I know, we fiercely value our independence.
Do not take my words as a critique of Mr. Lakeman. He works in a tough industry. The race track is littered with people who have substance abuse problems, marriages fail often under the stress, and a nomadic or seasonal lifestyle is the norm. While majestic, thoroughbred horses require intense effort to maintain at peak performance. The hours people work at the track are long and hard. Success at the track is based on one thing--wins. Those wins are hard to come by. If I were Mr. Lakeman I would be delighted by the article in question. It raised his profile and he may attract the interest of a horse owner. But I am not Mr. Lakeman. I am not a novice to paralysis and have spent 30 years thinking about the social ramifications of paralysis. I utterly reject dominant sociocultural norms associated with disability. I hope with time a more nuanced understanding of disability will emerge. For that to happen the content of articles such as the one discussed need to shift fundamentally. The questions asked need to be about the social implications of disability and not rely on outdated stereotypes. Such articles may sell papers but are ultimately destructive to the people with disabilities that merely want to lead an ordinary life.
The Human Body: Can Disability Be Cool?
Monday, February 14, 2011
When I think of my wheelchair I think one thing: indispensible. I can assure you crawling is not an efficient means of locomotion. I cannot go far on the rare occasion when my wheelchair has a mechanical problem. I firmly believe wheelchairs need to be rugged in the extreme. When I get a wheelchair frame on the day it arrives I drop it out a third story window. If it survives the fall it is good to go. I have high end hubs and wheels. I have top notch upholstery. I change all parts that experience wear and tear on a regular basis. When I travel or go out on an errand I always carry a spare tire, inner tube and pump. I am in fact entirely dependent upon my wheelchair for locomotion. This dependency does not bother me one iota. I am very attached to my wheelchair. I love that it empowers me. It makes my life go. I feel at home in my wheelchair and there is a bond that is hard to describe. I was thinking about this bond as well as how frail the human body is this weekend. I am coming to the end of my journey with my wound. Within a few weeks or at most a month or two I will be up and around. I have found myself thinking that I want to in some way remember this time in my life. One way to remember is to modify your body. In a way I have already done that: I have grown a beard. I look like a paralyzed Santa Claus. My hair has little grey but my beard is white. But I was thinking of something more. Perhaps a tattoo or some other permanent mark. Perhaps some intense experience. I want to do something to remind me of this dark time. And if you think I am exaggerating I suggest you spend six months in bed in your own home.
My thoughts above have me looking through various body art books. I have an intense interest in body art and modification. I am thrilled and appalled at the way tattoos and body art have gone mainstream. I am thrilled because tattoo as an art form, a fine art, is now widely acknowledged. I am appalled because an under ground art form has been transformed and commodified. One can buy tattoo purses, wallets, sheets, lap top covers and Sailor Jerry rum to mention but a few items I have seen. The American Museum of Natural History even had an exhibit many years ago that thrilled me--until I saw the gift shop and how much it cost to enter the exhibit. The rise of body art has caught the attention of many academics. These academics talk about the post modern or post modern physical body. I lecture about this in one of the classes I teach, Body Art and Modification. I always hold this lecture off for the end of the term. It is a hard concept to grasp, the post modern or post physical body. I quickly learned to use popular culture references--the Terminator movies or any other reference to cyborgs. Students get this. They are all over this as it excites their imagination. I refer to prostheses, chips implanted in the brain, hearing aides, glasses, pace makers etc. The technology students get--they get it way better than me. It is an integral part of their life and upbringing. But they fail to see the whole picture--or least struggle with it. What do they struggle with: In the words of Stephen Kuusisto:
The post-physical body is a confluence of material reality and imagination but it is also co-determined by or within politics. The production of material culture is therefore still a matter of 19th century economics. Accordingly the cyborigian person with a disability is a hostage of sorts. We are, it seems, living in the age of the promissory �improved� body�yet that body is still stuck between the territories of production (politics), reproduction (material expense) and imagination (compulsory normativity).
Students, and I would venture to guess the average person, does not get the hostage reference used by Kuusisto. Sure technology is cool. The mix of technology and the human body is even more cool. But that interplay is subject to many other variables. Politics, culture, and economics are major influences. Wheelchair technology, especially power chair technology, is amazing. It can transform a person's life just as my wheelchair has changed mine. But what good is that technology if it is so expensive it cannot be utilized. And wheelchairs, wheelchair cushions, and the bed I am in right now are way past the budget of most people. This does not begin to address the issue of health care coverage of supposedly "complex technology". Worse yet, wheelchairs and associated needed adaptive devices are not seen as empowering by business people and politicians. They are seen as just costly. Socially there is stigma attached to some technology. People do not react positively to a power wheelchair. They are big, bulky, and powerful. People seem to want to leap out of the way or stare. I saw this first hand this weekend--I was able to get out and I was at the Home Depot. A man with his family was shopping. The man used a power chair and it was like watching Moses part the Red Sea. Wherever he went people scattered. This man's wheelchair was empowering to him but to the rest of the world, or those shopping at the Home Depot on Saturday, he was a person to be avoided.
Given the above i am skeptical about the post modern human body. Our acceptance of other bodies is socially based. The technologically to change the human body exists and it may be empowering but that empowerment is socially decided or constructed. To me my wheelchair is cool technology. To others, it is a sign of weakness and infirmity. Are hearing aides the elderly use cool? In a word no and I haste to ad not covered by health insurance. In contrast, cochlear implants are accepted technology and an entire industry now exists to support them. I could go on with multiple other examples but the point i am making should be clear. In only one instance have I seen a mix of technology and disability negate the stigma attached to wheelchair use. This is when I ski--sit skis for some reason are not only accepted but to a degree are socially prestigious. We can see this in the incorporation of mono skiers in the X Games and open acceptance of adaptive skiers at most ski resorts. I wish I could duplicate this elsewhere. In the mean time I am content with my white beard. It seems to have had a good impact on young children. I noticed more smiles from little kids in the few instances when I get out. Of course another interpretation could be is that I am simply getting old and they are smiling at the old guy--and the wheelchair and old age match in their minds. I do not want to think this way and will instead think I am more like Santa Claus.
My thoughts above have me looking through various body art books. I have an intense interest in body art and modification. I am thrilled and appalled at the way tattoos and body art have gone mainstream. I am thrilled because tattoo as an art form, a fine art, is now widely acknowledged. I am appalled because an under ground art form has been transformed and commodified. One can buy tattoo purses, wallets, sheets, lap top covers and Sailor Jerry rum to mention but a few items I have seen. The American Museum of Natural History even had an exhibit many years ago that thrilled me--until I saw the gift shop and how much it cost to enter the exhibit. The rise of body art has caught the attention of many academics. These academics talk about the post modern or post modern physical body. I lecture about this in one of the classes I teach, Body Art and Modification. I always hold this lecture off for the end of the term. It is a hard concept to grasp, the post modern or post physical body. I quickly learned to use popular culture references--the Terminator movies or any other reference to cyborgs. Students get this. They are all over this as it excites their imagination. I refer to prostheses, chips implanted in the brain, hearing aides, glasses, pace makers etc. The technology students get--they get it way better than me. It is an integral part of their life and upbringing. But they fail to see the whole picture--or least struggle with it. What do they struggle with: In the words of Stephen Kuusisto:
The post-physical body is a confluence of material reality and imagination but it is also co-determined by or within politics. The production of material culture is therefore still a matter of 19th century economics. Accordingly the cyborigian person with a disability is a hostage of sorts. We are, it seems, living in the age of the promissory �improved� body�yet that body is still stuck between the territories of production (politics), reproduction (material expense) and imagination (compulsory normativity).
Students, and I would venture to guess the average person, does not get the hostage reference used by Kuusisto. Sure technology is cool. The mix of technology and the human body is even more cool. But that interplay is subject to many other variables. Politics, culture, and economics are major influences. Wheelchair technology, especially power chair technology, is amazing. It can transform a person's life just as my wheelchair has changed mine. But what good is that technology if it is so expensive it cannot be utilized. And wheelchairs, wheelchair cushions, and the bed I am in right now are way past the budget of most people. This does not begin to address the issue of health care coverage of supposedly "complex technology". Worse yet, wheelchairs and associated needed adaptive devices are not seen as empowering by business people and politicians. They are seen as just costly. Socially there is stigma attached to some technology. People do not react positively to a power wheelchair. They are big, bulky, and powerful. People seem to want to leap out of the way or stare. I saw this first hand this weekend--I was able to get out and I was at the Home Depot. A man with his family was shopping. The man used a power chair and it was like watching Moses part the Red Sea. Wherever he went people scattered. This man's wheelchair was empowering to him but to the rest of the world, or those shopping at the Home Depot on Saturday, he was a person to be avoided.
Given the above i am skeptical about the post modern human body. Our acceptance of other bodies is socially based. The technologically to change the human body exists and it may be empowering but that empowerment is socially decided or constructed. To me my wheelchair is cool technology. To others, it is a sign of weakness and infirmity. Are hearing aides the elderly use cool? In a word no and I haste to ad not covered by health insurance. In contrast, cochlear implants are accepted technology and an entire industry now exists to support them. I could go on with multiple other examples but the point i am making should be clear. In only one instance have I seen a mix of technology and disability negate the stigma attached to wheelchair use. This is when I ski--sit skis for some reason are not only accepted but to a degree are socially prestigious. We can see this in the incorporation of mono skiers in the X Games and open acceptance of adaptive skiers at most ski resorts. I wish I could duplicate this elsewhere. In the mean time I am content with my white beard. It seems to have had a good impact on young children. I noticed more smiles from little kids in the few instances when I get out. Of course another interpretation could be is that I am simply getting old and they are smiling at the old guy--and the wheelchair and old age match in their minds. I do not want to think this way and will instead think I am more like Santa Claus.
Hopelessly Flawed Health Care System and Decision Making
Sunday, February 6, 2011
I have had way to much contact with our health care system since last summer. First i had urological surgery and then a severe pressure sore I am still dealing with. In the last few months all those I have met that work in the health industrial complex agree the American health care system is deeply flawed. The words I have heard the most to describe our health care system are grossly dysfunctional. Few agree with me that we need to somehow move toward a single government run system. Even fewer like what Obama has proposed. When I state my endorsement of a single payer system the reaction is often one of silence or polite indifference. A few will venture a negative comment about socialized medicine while others point out that the government also runs the department of motor vehicles and query "how is that working out for you". I usually reply that I trust the government more than I trust health insurance companies and policies that are designed not be utilized. This exchange is pointless as nothing is accomplished. I do not pretend to have the answer to our current health care crisis--and there is no doubt the word crisis applies. I do know something has to change. I feel very strongly about this because I am virtually uninsurable. Insurance companies have the right to make money but we Americans I believe have the right to be able to afford adequate health insurance. Our government has utterly failed to protect half the population and people like me that are locked out of insurance industry. There is no question to me that health care is a basic human right. From an economic point of view I understand health insurance companies are designed to make money--this is why such corporations exist. But the health care industry must be regulated in a way that all Americans can access the system equally. Too many I know fear getting ill. People fear illness because they worry about the costs involved. This is just wrong.
What we need is a massive cultural change when it comes to how we perceive the health industrial complex. We need health care professionals to become human again. I think it is just too easy for us to complain and not demand social change. When I was ready to be discharged from the hospital in the Fall my choices were stark--go to a nursing home or get a clinitron bed and have family care for me. This was not really a choice. The surgeon following my care said simply "that's the way it is, there is nothing I can do". The discharge planner did nothing--explained what was and was not covered and told me "that's all I can do". Sorry but that is not acceptable. We Americans value personal autonomy almost as much as we value life itself. This throwing up of hands and saying "that's the way it is"is not acceptable and must change. There is much debate within bioethics about the degree to which doctors advise their patients. Doctors now routinely lay out the options as though we are playing the old TV game show Let's Make a Deal. This is done under the belief that patients are the best person equipped to decide what is best for them. In theory this is correct--in theory. But how many people understand the nuances, meaning, and ramifications of those decisions. In the end we end up feeling very much alone and isolated. Most of us die in a hospital, unaware and medicated into oblivion. For the vast majority unfamiliar with hospitals they are unable to know what is the "right thing to do". I am not suggesting we put such decision making back into the hands of doctors and the health care industry. What I am suggesting is that we need to have health care professionals empower people to navigate a complex cultural system that is not only vastly different but scary. In my estimation few doctors are capable of doing this. They are in many instances oblivious to the needs of those they are charged with healing. Patient care representatives are no better--they are adept what deciphering what one is and is not covered for by a given insurance company. They do nothing more and nothing less. Their job is to get a person out the door without any fuss. What happens when they leave the front door is of no concern.
I am naive? You bet. But I am also hopeful that if enough people get fed up and refuse to be abused by health care industrial complex change will be forced upon corporations that simply do not care one iota. I know this because I am spending much of my time fighting my health insurance company and the wound vacuum company KCI. If I have learned one thing it is that these companies do not care one iota. They are nothing short of evil. They want one thing and one thing only--payment. KCI has earned my particular wrath as they are stunning in their disregard for the humans that use their products. Those that I have spoken to at KCI have no heart--no soul. The corporate mentality has infected the people that work for KCI to the extent they have no empathy. None. To me this is a symptom of a much larger grossly dysfunctional health care industrial complex. This complex can be changed. We must demand it. How we do this I do not know. I do know we as are all cultural systems capable of such change. Look at the newspapers and read about what is transpiring in Egypt. I for one never thought such change was possible. A friend of mine has written about the situation in Egypt and noted we have had American Pharaoh in place for decades. If Egyptian citizens can rail against the government and force such a cataclysmic change i posit the question--why can we Americans not demand comparable change in our health care industrial complex?
What we need is a massive cultural change when it comes to how we perceive the health industrial complex. We need health care professionals to become human again. I think it is just too easy for us to complain and not demand social change. When I was ready to be discharged from the hospital in the Fall my choices were stark--go to a nursing home or get a clinitron bed and have family care for me. This was not really a choice. The surgeon following my care said simply "that's the way it is, there is nothing I can do". The discharge planner did nothing--explained what was and was not covered and told me "that's all I can do". Sorry but that is not acceptable. We Americans value personal autonomy almost as much as we value life itself. This throwing up of hands and saying "that's the way it is"is not acceptable and must change. There is much debate within bioethics about the degree to which doctors advise their patients. Doctors now routinely lay out the options as though we are playing the old TV game show Let's Make a Deal. This is done under the belief that patients are the best person equipped to decide what is best for them. In theory this is correct--in theory. But how many people understand the nuances, meaning, and ramifications of those decisions. In the end we end up feeling very much alone and isolated. Most of us die in a hospital, unaware and medicated into oblivion. For the vast majority unfamiliar with hospitals they are unable to know what is the "right thing to do". I am not suggesting we put such decision making back into the hands of doctors and the health care industry. What I am suggesting is that we need to have health care professionals empower people to navigate a complex cultural system that is not only vastly different but scary. In my estimation few doctors are capable of doing this. They are in many instances oblivious to the needs of those they are charged with healing. Patient care representatives are no better--they are adept what deciphering what one is and is not covered for by a given insurance company. They do nothing more and nothing less. Their job is to get a person out the door without any fuss. What happens when they leave the front door is of no concern.
I am naive? You bet. But I am also hopeful that if enough people get fed up and refuse to be abused by health care industrial complex change will be forced upon corporations that simply do not care one iota. I know this because I am spending much of my time fighting my health insurance company and the wound vacuum company KCI. If I have learned one thing it is that these companies do not care one iota. They are nothing short of evil. They want one thing and one thing only--payment. KCI has earned my particular wrath as they are stunning in their disregard for the humans that use their products. Those that I have spoken to at KCI have no heart--no soul. The corporate mentality has infected the people that work for KCI to the extent they have no empathy. None. To me this is a symptom of a much larger grossly dysfunctional health care industrial complex. This complex can be changed. We must demand it. How we do this I do not know. I do know we as are all cultural systems capable of such change. Look at the newspapers and read about what is transpiring in Egypt. I for one never thought such change was possible. A friend of mine has written about the situation in Egypt and noted we have had American Pharaoh in place for decades. If Egyptian citizens can rail against the government and force such a cataclysmic change i posit the question--why can we Americans not demand comparable change in our health care industrial complex?
Taxis In NYC
Friday, February 4, 2011
Hailing a cab in New York City should be easy. It is easy for all those that are bipedal. If you ever want an exercise in frustration I suggest you use a wheelchair and try hailing cab. Good luck with that effort. I for one have given up. I refuse to give my money to rude cab drivers. Every experience I have had with cab drivers in the city has been overwhelmingly negative. Last time i took a cab the driver spent the entire ride telling me what a hassle it was to "help" a person like me, that he lost time "helping" me, and that they should have "special" taxis for people like me. I told this man I would be thrilled to use a "special" taxi but of the 13,237 yellow cabs only 230 are wheelchair-accessible. Gee no wonder i have trouble.
The situation hailing a cab in NYC is unlikely to get better any time soon. The city is in the process of choosing the cab of the future and of the three finalists only one is accessible. It is unlikely this accessible cab will be chosen. The city has suggested and had a stealth experimental dispatching number people with a disability could call when they needed a taxi This was in the estimation of the city a reasonable accommodation. If this is reasonable to you I think we have vastly different interpretation of the word. Now Senator Tom Harkin has backed the accessible taxi. This is great but for one thing--Harkin is from Iowa not New York. I applaud Harkin's support but doubt it will do much good. I wish I had an answer to the problem of hailing cabs in New York and other cities such as Chicago. I do know other cities present no problems--mostly Western cities such as Seattle and San Francisco. I also know cities like London present no problems either. Perhaps we need to study the issue of why--why is this a problem in some cities and not an issue in others. In the meantime i will continue to use MTA buses that provide slow but reliable service.
The situation hailing a cab in NYC is unlikely to get better any time soon. The city is in the process of choosing the cab of the future and of the three finalists only one is accessible. It is unlikely this accessible cab will be chosen. The city has suggested and had a stealth experimental dispatching number people with a disability could call when they needed a taxi This was in the estimation of the city a reasonable accommodation. If this is reasonable to you I think we have vastly different interpretation of the word. Now Senator Tom Harkin has backed the accessible taxi. This is great but for one thing--Harkin is from Iowa not New York. I applaud Harkin's support but doubt it will do much good. I wish I had an answer to the problem of hailing cabs in New York and other cities such as Chicago. I do know other cities present no problems--mostly Western cities such as Seattle and San Francisco. I also know cities like London present no problems either. Perhaps we need to study the issue of why--why is this a problem in some cities and not an issue in others. In the meantime i will continue to use MTA buses that provide slow but reliable service.
A Room with a View
Wednesday, February 2, 2011
This is what I look at from my bed in the living room. My house is oriented to the northwest so the sunsets are wonderfully colorful. I have a set of three six foot sliding doors in the living room that open up onto a deck. My house is on a ridge and I can see for miles. Every day I look out my window I realize I am a very lucky man. I may be stuck inside and house and bed bound but it is a beautiful place to be stuck.
We are having yet another snow/ice storm. For the first time my roof had to be cleared of snow. My brother spent hours on my roof yesterday shoveling snow. Thankfully I have no gutters and a slight slope roof incline. Of course this is easy for me to write as I was not the one on the roof. Schools are closed today and I have not seen a car go by since I saw a plow go by at 5AM. How I love winter! My love this year is tempered by the fact I have been a mere observer this season. Next year I am going to ski to my heart's content. Who knows I may even get to ski in late March. Ah, dreams on an icy day.
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