Thanks to Elizabeth who left a comment on my last post I read What Health Insurance Means to Me at Busily Seeking...Continual Change. Wow, and I thought my words the last few days were harsh. I read this blog once in a while but for whatever reason it has fallen off my radar. I have always admired Jeneva Burroughs writing and found the below paragraph to be searing. I urge everyone to read the last two posts she has written about the health care debate.
During this election, I imagine very little will be said about healthcare, the only exception being Romney's undoubted promise to overturn "Obamacare," whatever that actually may be. Hovering behind him may be Paul Ryan, like the swordsman who beheaded Anne Boleyn, distracting our attention with homilies about hard work and shared sacrifice before he swings the arc of his sword behind us, neatly severing our intelligence from our primordial gut responses to the appeal of American individualism. He'll mop up our blood with Medicare vouchers and toss them to the crowd.
The Politics of Health Care Reform
Monday, June 25, 2012
I was interviewed this morning by a college radio station. The focus of the interview was on how people with a disability or those with a chronic health care concern will be affected by the Affordable Care Act. Note I refuse to use the derisive term Obamacare. The ACA is not about Obama it is about reforming the grossly dysfunctional American health care system. It is about the tens of millions of Americans that have no insurance or those with inadequate insurance. It is about people like me. It is about my son. It is about my neighbor. It is about any person that might happen to read this post and is an American citizen. And sadly much of the ACA is about politics and the conservative justices that make up the Supreme Court. This thought came to me as I was reading Wesley Smith who has a blog Second Hand Smoke. Smith is not my favorite commentator. In fact Smith reminds me of Sydney Hook. Like many others in the 1930s, during the Great Depression Hook embraced communism. Later he renounced his radical views and during the Cold War helped the FBI destroy the careers of many Leftists. Smith is not intent on destroying anyone's career but he is polemical in the extreme.
Here is what Smith has to say about the ACA, Obama and the Democratic Party goals:
They wanted to federalize a huge swath of the economy for political and ideological purposes. Indeed, Obama has already used Obamacare as a method to hand out constituency goodies�at insurance company expense�and use the law to create false wedge political issues, a primary reason for the culturally imperialistic Free Birth Control Rule. Obamacare was also a seizing of power. It is part of elevating the already extensive influence of the technocratic class�which is why I worry it will be allowed to stand by the Supreme Court that tends to reflect technocratic thinking. It is also about erecting a bureaucratic state unaccountable to the people. In short, the law is about making us less free.
Yikes this sort of rhetoric makes me yearn for the delights of the Tea Party. Smith was responding to the "liberal columnist" E. J. Dionne who had an Op Ed piece in the Washington Post over the weekend entitled "Will We Love the Healthcare Law if it Dies". Does Smith really need to label Dionne as a liberal columnist? No, the only point of this characterization is to undermine his credibility. What did Dionne write that was so objectionable? Smith used this quote from Dionne:
Maybe now, supporters of the ACA will find their voices and point to the 30 million people the law would help to buy health insurance, how much assistance it gives businesses, how it creates a more rational health insurance market, how it helps those 26 and under stay on their parents� health plans, how it protects those with pre-existing conditions. �Obamacare� isn�t about President Obama. It�s about beginning to bring an end to the scandal of a very rich nation leaving so many of its citizens without basic health coverage. However the court rules, we need to remember why this whole fight started in the first place.
I fail to grasp how any person with an ounce of common sense can defend our health care system as it is currently constructed. Health care costs are the leading cause of bankruptcy in the United States. Most Americans are one serious illness away from financial disaster. And what about those of us with permanent long term disabilities? We are uninsurable. We are a financial drain on profits. As Michael Berube noted no one wants to talk about disability. It is the skeleton in the closet. We people with a disability are silently shipped off to nursing homes never to heard from again. I am sure Smith will think I am being just as polemical as he was. There is a big difference between us however. I doubt he fears going to the hospital. I am sure no one will suggest he is better off dead than receiving life saving antibiotics. This is not rhetoric, this is the reality I have experienced. It is the dark under belly no one wants to talk about.
Here is what Smith has to say about the ACA, Obama and the Democratic Party goals:
They wanted to federalize a huge swath of the economy for political and ideological purposes. Indeed, Obama has already used Obamacare as a method to hand out constituency goodies�at insurance company expense�and use the law to create false wedge political issues, a primary reason for the culturally imperialistic Free Birth Control Rule. Obamacare was also a seizing of power. It is part of elevating the already extensive influence of the technocratic class�which is why I worry it will be allowed to stand by the Supreme Court that tends to reflect technocratic thinking. It is also about erecting a bureaucratic state unaccountable to the people. In short, the law is about making us less free.
Yikes this sort of rhetoric makes me yearn for the delights of the Tea Party. Smith was responding to the "liberal columnist" E. J. Dionne who had an Op Ed piece in the Washington Post over the weekend entitled "Will We Love the Healthcare Law if it Dies". Does Smith really need to label Dionne as a liberal columnist? No, the only point of this characterization is to undermine his credibility. What did Dionne write that was so objectionable? Smith used this quote from Dionne:
Maybe now, supporters of the ACA will find their voices and point to the 30 million people the law would help to buy health insurance, how much assistance it gives businesses, how it creates a more rational health insurance market, how it helps those 26 and under stay on their parents� health plans, how it protects those with pre-existing conditions. �Obamacare� isn�t about President Obama. It�s about beginning to bring an end to the scandal of a very rich nation leaving so many of its citizens without basic health coverage. However the court rules, we need to remember why this whole fight started in the first place.
I fail to grasp how any person with an ounce of common sense can defend our health care system as it is currently constructed. Health care costs are the leading cause of bankruptcy in the United States. Most Americans are one serious illness away from financial disaster. And what about those of us with permanent long term disabilities? We are uninsurable. We are a financial drain on profits. As Michael Berube noted no one wants to talk about disability. It is the skeleton in the closet. We people with a disability are silently shipped off to nursing homes never to heard from again. I am sure Smith will think I am being just as polemical as he was. There is a big difference between us however. I doubt he fears going to the hospital. I am sure no one will suggest he is better off dead than receiving life saving antibiotics. This is not rhetoric, this is the reality I have experienced. It is the dark under belly no one wants to talk about.
The Disability Bond Can Be Heartwarming
Saturday, June 23, 2012
Yesterday my son and I went to the local grocery store. It is great to have him home for a fews days despite the fact he can drive me crazy. Regardless, we were wandering around the grocery store as I wanted to cook something different and use some coupons. We ended up in the produce section where I saw a young girl and her mother. The girl was about six years old. She was sitting in a high end wheelchair tooling around at break neck speeds and bumping into all sorts of stuff. I was so excited! Sightings of adults using a wheelchair are rare in my area. Sightings of a child that uses an obviously high end wheelchair are unheard of. In fact this was a first in 18 years. I gave the young girl a huge smile. She totally ignored me. Awesome, I thought I am just another adult. I asked the mom about the wheelchair, it was an ultra light wheelchair with what looked like a seat insert. The girls posture was perfect. The wheelchair fitted her perfectly. I was ridiculously excited. For me, with one glance I can tell is a person is in the correct manual wheelchair and is seated properly. This is actually quite complicated and a wheelchair seating specialist can enhance a persons life. I engaged the mom and praised her daughter and her perfect positioning. She seemed quite pleased. As we talked, I was thrilled to see that she let her daughter explore on her own but always within sight. We talked shop a bit--little things about how hands get dirty from pushing all day, what rims might eliminate some dirt. I stated such issues were occupational hazards. She laughed. It was nothing short of wonderful--just a two or three minute chat with a stranger.
I spent much of the afternoon wondering why I was delighted by this social encounter. Really, I was over the top happy. I realized that I am often in a sense lonely. Where are others like me? Where are the kids with a disability that will grow and become responsible adults? Where are my crippled peers? In this sense I am lonely. Of course I have friends and colleagues that have a disability but they are scattered all over the country. I am weary of always being the only person that uses a wheelchair at a social event. I am tired of being shunted off to an obscure entrance, told to wait while someone mythic person finds the key to a lift. I watched others poured into the building. Does any one else see how wrong this is? No. This is the weakness of so called "reasonable accommodations". I find many "reasonable accommodations" very unreasonable if not deeply objectionable. On bad days I think things will never change. But yesterday was not a bad day. I saw the future. I saw a mom with her daughter that used a wheelchair. I saw a good wheelchair that fit this young girl perfectly. I saw normal human interaction and was part of it! This is what the ADA was designed to do. Insure equality for all people with a disability. In my mind I want to believe the young girl I met goes to the totally accessible local public school. She gets on a bus with her peers. She participates in all class trips. She has many friends and is not taunted by others. She participates in all gym activities. She is included in any after school activity she wishes. The thought of this experience so different from my own makes my heart soar. I hope it is the reality she will experience.
I spent much of the afternoon wondering why I was delighted by this social encounter. Really, I was over the top happy. I realized that I am often in a sense lonely. Where are others like me? Where are the kids with a disability that will grow and become responsible adults? Where are my crippled peers? In this sense I am lonely. Of course I have friends and colleagues that have a disability but they are scattered all over the country. I am weary of always being the only person that uses a wheelchair at a social event. I am tired of being shunted off to an obscure entrance, told to wait while someone mythic person finds the key to a lift. I watched others poured into the building. Does any one else see how wrong this is? No. This is the weakness of so called "reasonable accommodations". I find many "reasonable accommodations" very unreasonable if not deeply objectionable. On bad days I think things will never change. But yesterday was not a bad day. I saw the future. I saw a mom with her daughter that used a wheelchair. I saw a good wheelchair that fit this young girl perfectly. I saw normal human interaction and was part of it! This is what the ADA was designed to do. Insure equality for all people with a disability. In my mind I want to believe the young girl I met goes to the totally accessible local public school. She gets on a bus with her peers. She participates in all class trips. She has many friends and is not taunted by others. She participates in all gym activities. She is included in any after school activity she wishes. The thought of this experience so different from my own makes my heart soar. I hope it is the reality she will experience.
Blatant Discrimination: Who Receives Support and Why
Thursday, June 21, 2012
Yesterday I read a story about Becky Andrews, a blind woman who was blatantly discriminated against at an Ann Taylor store in Salt Lake City. Apparently Ms. Andrews likes the clothes Ann Taylor sells. She walked into the store with her guide dog, in harness, and was asked to leave. According to Ms. Andrews she politely explained her dog was a service animal and was legally allowed to enter any public establishment. Her words did not resonate with the employees or the manager she spoke to. In frustration, and I assume anger, she eventually left the store. I share Ms. Andrews outrage. I too have been subjected to blatant discrimination. While I am no longer shocked by people who discriminate against me, I find the experience deeply unsettling. For more about what Ms. Taylor experienced read her blog Cruisn' with Cricket. See her post of June 19, "Finding Lemonade". Link: http://cruisinwithcricket.blogspot.com/
Ms. Andrews story is all over the internet and could go viral. Multiple mainstream news outlets have used her story and she has appeared on a local Salt Lake television news program. A few things have struck me about Ms. Andrews. For example, she is a slender and attractive woman. Her blog has photos of her with her family and guide dog Cricket, a yellow lab. This makes me wonder--is her story of blatant discrimination enhanced by her appearance? Ms. Andrews has also been clear she has no intention of suing Ann Taylor even though she has every right to file a lawsuit--what took place was a serious civil rights violation covered under the ADA. Instead, Ms. Andrews has offered to help educate Ann Taylor employees. In my humble opinion, Ms. Andrews is being far too nice and this too has me wondering. I hesitate to read comments after disability stories--they are routinely horrible and ignorant. However, in this case the comments are 100% supportive. Ms Andrews is the paragon of virtue. She has literally turned the other cheek and has taken the high road. She asked for nothing from Ann Taylor. She will not file a law suit. Her comments exude dignity and grace. As the days have passed Ann Taylor looks worse and worse and Ms. Andrews more dignified. And this too makes me wonder. What if she lashed out in anger? What if she tweeted when she was discriminated against? What if she filed a law suit? What if she appeared at the front of the Ann Taylor with a lawyer and dozens of other blind people? What if she organized a disruptive protest? Somehow I sincerely doubt all the comments would be supportive. And again this has me wondering. Ed Roberts, a founder of the disability rights movement, believed anger was a powerful and useful emotion. Angry people get stuff done when focused on a constructive goal like access. Where is Ms. Andrews anger? One can be angry and polite. One can use anger to force significant social change. But that is not how society perceives people with a disability. Yes, the thinking goes we are angry. Angry we cannot walk, hear or see. We are bitter and angry because our bodies cannot do what other bodies do without thought or appreciation. We are angry over our physical misfortune. This thinking is so wrong it boggles the mind. I find it hard to fathom how any intelligent person thinks this way. Experience tells me otherwise.
I was also struck that every story I read about Ms. Andrews included a diagnosis. All stories in the main stream press noted she had Retinitis Pigmentosa. I fail to understand why this is an any way relevant to the discrimination she experienced at the Ann Taylor store. Did she need to prove she had a legitimate disability? Noting why she is visually impaired utterly misses the point. Laws protecting the civil rights of people that rely on a guide dog date back to the 1960s. I may be wrong on this point and I am sure Stephen Kuusisto could weigh in with a fascinating history. More to the point, the ADA is now over twenty years old. Ms Andrews has every right to expect that her civil rights will not be violated so long after the ADA was passed. Ms. Andrews and I share the same civil rights as those that can walk and see. No news story I read raised this point. No comment focused on the real issue--the violation of Ms. Andrews civil rights.
One last point. I wonder if the public support for Ms. Andrews civil rights is rooted in the knowledge any so called reasonable accommodation for people who cannot see does not incur a significant cost. Everyone knows ramps and elevators are expensive. Worse yet, they are rarely used. So the thinking goes this is an utter waste of money. No one questions why the lifts and elevators are not used. In my experience maybe one in ten bus drivers know how to tie down my wheelchair. In my experience a locked elevator is a useless waste of space. Locked alternative access to buildings is also an utter failure. Call bells are not answered. These violations are socially acceptable. No one ever supports me when these fundamental violations occur. My point is not to distance myself from Ms. Andrews and other people who cannot see. Instead I am pointing out that all violations of civil rights must be met with condemnation. The root cause is identical. Disability rights are civil rights.
Ms. Andrews story is all over the internet and could go viral. Multiple mainstream news outlets have used her story and she has appeared on a local Salt Lake television news program. A few things have struck me about Ms. Andrews. For example, she is a slender and attractive woman. Her blog has photos of her with her family and guide dog Cricket, a yellow lab. This makes me wonder--is her story of blatant discrimination enhanced by her appearance? Ms. Andrews has also been clear she has no intention of suing Ann Taylor even though she has every right to file a lawsuit--what took place was a serious civil rights violation covered under the ADA. Instead, Ms. Andrews has offered to help educate Ann Taylor employees. In my humble opinion, Ms. Andrews is being far too nice and this too has me wondering. I hesitate to read comments after disability stories--they are routinely horrible and ignorant. However, in this case the comments are 100% supportive. Ms Andrews is the paragon of virtue. She has literally turned the other cheek and has taken the high road. She asked for nothing from Ann Taylor. She will not file a law suit. Her comments exude dignity and grace. As the days have passed Ann Taylor looks worse and worse and Ms. Andrews more dignified. And this too makes me wonder. What if she lashed out in anger? What if she tweeted when she was discriminated against? What if she filed a law suit? What if she appeared at the front of the Ann Taylor with a lawyer and dozens of other blind people? What if she organized a disruptive protest? Somehow I sincerely doubt all the comments would be supportive. And again this has me wondering. Ed Roberts, a founder of the disability rights movement, believed anger was a powerful and useful emotion. Angry people get stuff done when focused on a constructive goal like access. Where is Ms. Andrews anger? One can be angry and polite. One can use anger to force significant social change. But that is not how society perceives people with a disability. Yes, the thinking goes we are angry. Angry we cannot walk, hear or see. We are bitter and angry because our bodies cannot do what other bodies do without thought or appreciation. We are angry over our physical misfortune. This thinking is so wrong it boggles the mind. I find it hard to fathom how any intelligent person thinks this way. Experience tells me otherwise.
I was also struck that every story I read about Ms. Andrews included a diagnosis. All stories in the main stream press noted she had Retinitis Pigmentosa. I fail to understand why this is an any way relevant to the discrimination she experienced at the Ann Taylor store. Did she need to prove she had a legitimate disability? Noting why she is visually impaired utterly misses the point. Laws protecting the civil rights of people that rely on a guide dog date back to the 1960s. I may be wrong on this point and I am sure Stephen Kuusisto could weigh in with a fascinating history. More to the point, the ADA is now over twenty years old. Ms Andrews has every right to expect that her civil rights will not be violated so long after the ADA was passed. Ms. Andrews and I share the same civil rights as those that can walk and see. No news story I read raised this point. No comment focused on the real issue--the violation of Ms. Andrews civil rights.
One last point. I wonder if the public support for Ms. Andrews civil rights is rooted in the knowledge any so called reasonable accommodation for people who cannot see does not incur a significant cost. Everyone knows ramps and elevators are expensive. Worse yet, they are rarely used. So the thinking goes this is an utter waste of money. No one questions why the lifts and elevators are not used. In my experience maybe one in ten bus drivers know how to tie down my wheelchair. In my experience a locked elevator is a useless waste of space. Locked alternative access to buildings is also an utter failure. Call bells are not answered. These violations are socially acceptable. No one ever supports me when these fundamental violations occur. My point is not to distance myself from Ms. Andrews and other people who cannot see. Instead I am pointing out that all violations of civil rights must be met with condemnation. The root cause is identical. Disability rights are civil rights.
Disability and Health Care: Michael Berube Rules
Tuesday, June 19, 2012
Over the weekend Michael Berube published an outstanding article, "Our Great Healthcare Denial" in Salon. See http://www.salon.com/writer/michael_berube/. Berube makes many astute observations about healthcare and disability. The most stunning and accurate observation was: "We simply do not think about disability when we talk about health care". This silence affects liberals and conservatives alike. So the issue become why, why do we not talk about disability and healthcare? In a word denial. When I read this I stopped dead in my tracks. Wow, can the controversy over healthcare really be that basic? I do not know but Berube was persuasive. He wrote:
"if you stopped for a moment and shuddered at the thought that you or a loved one might lose your faculties, physical or cognitive, then that�s probably a good indicator of what�s going on here: Individually and collectively, we are in denial. And in a sense we have to be. No one of sound mind and body can wake up every day with a visceral awareness that their soundness of mind and body is a happy accident. None of us wants to start up the car in the knowledge that a random patch of ice can put us or our children into comas, and none of us wants to make our retirement plans on the assumption that we will be too infirm to enjoy it."
Berube goes on to note that when we think of the uninsured the first person that pops into our collective thought is a healthy young man or woman in their 20s, the picture of perfect health. The thinking goes, these people do not need healthcare and hence go without. The logic Berube describes is as follows:
"Americans think of health insurance as a personal calculation, like putting only just so much change in parking meters. You make that gamble, you leave your car too long, you get a ticket, it�s your problem. Or you make that decision, you go without insurance, you get sick, fine, you knew the risks. You pays your money and you takes your chances, and don�t come around here looking for a handout when you lose your shirt. Quite apart from the cruelty of this devil-take-the-hindmost approach to health care, what�s really stunning is how profoundly foolish it is. Sure, people know (or know that they have to pretend not to know) the risks of smoking, or drinking heavily, or eating bacon double cheeseburgers, or riding their motorcycle without a helmet. But most disabilities don�t work that way. They�re not the result of calculations and risk management."
I love the line "most disabilities don't work that way". Amen. Looking back to the first time I got sick I had no clue nor did my parents of how my life would be radically altered. I did nothing wrong. I woke up like any other day, a child interested in Sunday morning cartoons. People do not plan to become paralyzed. People do not plan on becoming disabled in the myriad of ways it is possible for this to happen. It is not supposed to be part of the life process. Well, I am living proof as are many others of the folly that disability is not relevant or part of life. In fact, if you live long enough the odds are very good one will age into a disability, physical or cognitive or perhaps both. To me, Berube is tapping into the American ideal of fierce independence. We are in control of our own destiny. This is utter nonsense to me. None of us are independent entities but rather a complex result of a multitude of social factors. Berube wrote:
"Once you�re born, health care and health insurance is a personal matter, and your encounters with nature�s mishaps are nobody�s business but your own. That�s why you haven�t heard from any American conservatives with the honesty or integrity to admit that the Affordable Care Act, known derisively in some (or all) quarters as �Obamacare,� prohibits insurance companies from denying coverage to disabled children under 19. Or that starting in 2014, the law will prevent insurers from excluding anyone from coverage or charging higher premiums for any pre-existing condition � including a disability."
This is the sort of discussion I would love to engage in. I would like to discuss why the Supreme Court controls the near and long term future of my son's health care. I would like discuss why I am effectively barred from comprehensive insurance until 2014--assuming healthcare reform moves forward (this is no sure thing). I would like to know how insurance companies justify charging me as paralyzed man a higher premium than a man who is bipedal. So much for the notion of being equal. How about we talk about disability? How about having a civil discussion. Instead we get Rick Santorum and Sarah Palin who use their disabled children to forward their political platforms and sway voters with empty emotional rhetoric: "Liberals want to kill our babies". This makes a great headline but has no semblance to the reality people with a disability live. Let's talk about healthcare bills being the leading cause of bankruptcy in America. Let's talk about misleading insurance policies. Let's talk about the people who are forced into nursing homes because of the institutional bias. Let's talk about the politicians we elect who ignore the views of those who voted them into office and instead cater to insurance lobbyists. These subjects are worthy of intense discussion.
"if you stopped for a moment and shuddered at the thought that you or a loved one might lose your faculties, physical or cognitive, then that�s probably a good indicator of what�s going on here: Individually and collectively, we are in denial. And in a sense we have to be. No one of sound mind and body can wake up every day with a visceral awareness that their soundness of mind and body is a happy accident. None of us wants to start up the car in the knowledge that a random patch of ice can put us or our children into comas, and none of us wants to make our retirement plans on the assumption that we will be too infirm to enjoy it."
Berube goes on to note that when we think of the uninsured the first person that pops into our collective thought is a healthy young man or woman in their 20s, the picture of perfect health. The thinking goes, these people do not need healthcare and hence go without. The logic Berube describes is as follows:
"Americans think of health insurance as a personal calculation, like putting only just so much change in parking meters. You make that gamble, you leave your car too long, you get a ticket, it�s your problem. Or you make that decision, you go without insurance, you get sick, fine, you knew the risks. You pays your money and you takes your chances, and don�t come around here looking for a handout when you lose your shirt. Quite apart from the cruelty of this devil-take-the-hindmost approach to health care, what�s really stunning is how profoundly foolish it is. Sure, people know (or know that they have to pretend not to know) the risks of smoking, or drinking heavily, or eating bacon double cheeseburgers, or riding their motorcycle without a helmet. But most disabilities don�t work that way. They�re not the result of calculations and risk management."
I love the line "most disabilities don't work that way". Amen. Looking back to the first time I got sick I had no clue nor did my parents of how my life would be radically altered. I did nothing wrong. I woke up like any other day, a child interested in Sunday morning cartoons. People do not plan to become paralyzed. People do not plan on becoming disabled in the myriad of ways it is possible for this to happen. It is not supposed to be part of the life process. Well, I am living proof as are many others of the folly that disability is not relevant or part of life. In fact, if you live long enough the odds are very good one will age into a disability, physical or cognitive or perhaps both. To me, Berube is tapping into the American ideal of fierce independence. We are in control of our own destiny. This is utter nonsense to me. None of us are independent entities but rather a complex result of a multitude of social factors. Berube wrote:
"Once you�re born, health care and health insurance is a personal matter, and your encounters with nature�s mishaps are nobody�s business but your own. That�s why you haven�t heard from any American conservatives with the honesty or integrity to admit that the Affordable Care Act, known derisively in some (or all) quarters as �Obamacare,� prohibits insurance companies from denying coverage to disabled children under 19. Or that starting in 2014, the law will prevent insurers from excluding anyone from coverage or charging higher premiums for any pre-existing condition � including a disability."
This is the sort of discussion I would love to engage in. I would like to discuss why the Supreme Court controls the near and long term future of my son's health care. I would like discuss why I am effectively barred from comprehensive insurance until 2014--assuming healthcare reform moves forward (this is no sure thing). I would like to know how insurance companies justify charging me as paralyzed man a higher premium than a man who is bipedal. So much for the notion of being equal. How about we talk about disability? How about having a civil discussion. Instead we get Rick Santorum and Sarah Palin who use their disabled children to forward their political platforms and sway voters with empty emotional rhetoric: "Liberals want to kill our babies". This makes a great headline but has no semblance to the reality people with a disability live. Let's talk about healthcare bills being the leading cause of bankruptcy in America. Let's talk about misleading insurance policies. Let's talk about the people who are forced into nursing homes because of the institutional bias. Let's talk about the politicians we elect who ignore the views of those who voted them into office and instead cater to insurance lobbyists. These subjects are worthy of intense discussion.
Are My Views Extreme?
Tuesday, June 12, 2012
I woke up this morning and as usual looked forward to reading comments about my latest post. I was pleased to see Elizabeth and Phil, two regular readers, as well as Catherine left comments. I was a bit taken aback by the comments. Elizabeth believes my views are as "extreme" as those I "excoriate". She also thinks the disability community response to "mercy killing" and "euthanasia" is "horribly simplistic. I urge you to read the comment Elizabeth left in full. Phil also took me to task. He wrote that he does "not believe that when a person chooses to die that he or she contributes to the devaluation of the disabled or the very sick". Death is a right in Phil's estimation--a popular sentiment or belief in American society. We are rugged individualists one and all. Both Phil and Elizabeth if I understand them correctly believe death should not be feared--that is a part of life.
I tried to address the points above without much luck in a long reply. A good friend suggested a post rather than a reply was in order. As usual, my friend was correct. So, before reading further look at the comments left by Catherine, Elizabeth and Phil.
It was not my intention to "excoriate" Mr. Johnson or any other individual. I do my level best to avoid personal confrontation. Mr. Johnson has the right to express his views. I thought I treated his views with respect, the same respect I would hope he would treat my words with. I was in no way attacking his character or desire to die. I had no interest in "excoriating" him or any other person with or without a disability. To do so, would be utterly pointless and counter productive. As I have attempted in the past, I tried to use Mr. Johnson's as a spring board to highlight the gross inequities that exist when people with a disability access the health care system. Simply put, the health care system as currently constructed is hostile to people with a disability. Yet Elizabeth is correct that thousands upon thousands of people have worked tirelessly for disability rights. In the twenty plus years since the ADA was passed American society is more accessible physically and socially. This is a given. Much heavy lifting still needs to be done however. And like it or not, lives are at stake. My life and Mr. Johnson's life are at stake. I suggest Elizabeth and others read my article, "Comfort Care as Denial of Personhood" in the Hastings Center Report. A physician strongly suggested death was preferable for me. The physician could make my death happen. This did not take place in the decades before the ADA was passed into law protecting my civil rights. This took place in 2010 more than twenty years after my civil rights were supposedly protected. This incident shook me to the very core. It shattered my trust and confidence. It took me a long time to come to terms with the fact a highly educated physician sincerely believed my life had no value. My death was the preferred course of action. Perhaps the physician believed in euthanasia. Perhaps he believed he was being "merciful", that I had suffered long enough. Here I will agree with Elizabeth--there was nothing simplistic about the thought process. The views that led up to this incident are complex and culturally laden. They did not take place in a void. They took place in a well respected hospital and both of us brought much cultural baggage to the exchange. I believed my life had value while the physician felt it had none. Our respective views were formed well before the incident took place.
Given the above, I vehemently disagree with Phil comment that he does "not believe that when a person chooses to die that he or she contributes to the devaluation of the disabled or the very sick". Phil is correct in that we do have the ability to "adapt" or chose not to "suffer" or to not be alone or decide a life is not worth living. I do not question this. We are entitled to our beliefs. I do question how such decisions are made. I do question whether we are really given a real choice. Disturbing ethical examples abound. For instance, a woman I knew became pregnant recently and she had tests to determine if her child would have Down Syndrome. The test was positive. She was given the results and a business card with a scheduled abortion date. Is this really a choice? Statistics demonstrate well over 90% of women choose abortion over having a child with Down Syndrome. To me, this is perilously close to a form of modern day Eugenics. Does using the word Eugenics make me an extremist or do I hold a simplistic viewpoint for using the word? I think not. Let me use one more example. A young man or woman in their early twenties is in a car accident. Suddenly they must learn to adapt to a high level spinal cord injury. How will this person adapt or will they choose not to adapt? Will this young person be told about sip and puff power wheelchairs and the world of adaptive sports? Will this person meet another well adjusted high level quadriplegic who is married and has children? I doubt it. I think it is far more likely this person will be shipped to a rehab center and quietly sent to a nursing home weeks or months later. Perhaps this person will become like Christina Symanski who chose to die. Again, I ask the question why. Why do some people choose to die? Why are some encouraged to die? Why do we have the resources to end the lives of those with a disability and in fact laud such people for their courageous actions? Meanwhile people like me, those that choose to live life to the fullest encounter discrimination decades after the ADA was passed. People like myself, disenfranchised and without power, are perceived to be an economic burden. Theoretically I share the same civil rights as others but I do not live in the world of theory. I live in a world that is hostile to my inclusion. I live in a world where I am repeatedly told I am a difficult person. Why am I difficult? I am difficult because I assert my civil rights. I point out injustices that make others uncomfortable. I am not silent. I am an uppity cripple. Here the obvious allusion is to so called uppity niggers that asserted their rights, civil rights no person would ever question today. Well, I am not near there yet. My civil rights are open to debate.
In all seriousness, it is very hard to express how hard it is for me and others with a disability to simply leave our homes. I know I will be stared at. I know I will encounter needless architectural obstacles. I know people will say demeaning things to me. Worse yet, none of these people that thoughtlessly violate my civil rights consider themselves to be bigoted. They are just "curious", "interested" or want to share their thoughts me. No consideration is given to my life, the inability to ever fit within the mainstream. I am public property. My existence open to good natured debate. Maybe this makes me an extremist. Perhaps Elizabeth is correct. I do live an extreme life. People with a disability are socially isolated. People with a disability are unemployed in overwhelming numbers. People with a disability are far more likely to be uneducated. People with a spinal cord injury like mine are less likely to marry and have children. People with a disability often cannot access the health care system. People with a disability are likely to live in an institution. I could go on but my point is clear. I do in fact live an extreme life.
I tried to address the points above without much luck in a long reply. A good friend suggested a post rather than a reply was in order. As usual, my friend was correct. So, before reading further look at the comments left by Catherine, Elizabeth and Phil.
It was not my intention to "excoriate" Mr. Johnson or any other individual. I do my level best to avoid personal confrontation. Mr. Johnson has the right to express his views. I thought I treated his views with respect, the same respect I would hope he would treat my words with. I was in no way attacking his character or desire to die. I had no interest in "excoriating" him or any other person with or without a disability. To do so, would be utterly pointless and counter productive. As I have attempted in the past, I tried to use Mr. Johnson's as a spring board to highlight the gross inequities that exist when people with a disability access the health care system. Simply put, the health care system as currently constructed is hostile to people with a disability. Yet Elizabeth is correct that thousands upon thousands of people have worked tirelessly for disability rights. In the twenty plus years since the ADA was passed American society is more accessible physically and socially. This is a given. Much heavy lifting still needs to be done however. And like it or not, lives are at stake. My life and Mr. Johnson's life are at stake. I suggest Elizabeth and others read my article, "Comfort Care as Denial of Personhood" in the Hastings Center Report. A physician strongly suggested death was preferable for me. The physician could make my death happen. This did not take place in the decades before the ADA was passed into law protecting my civil rights. This took place in 2010 more than twenty years after my civil rights were supposedly protected. This incident shook me to the very core. It shattered my trust and confidence. It took me a long time to come to terms with the fact a highly educated physician sincerely believed my life had no value. My death was the preferred course of action. Perhaps the physician believed in euthanasia. Perhaps he believed he was being "merciful", that I had suffered long enough. Here I will agree with Elizabeth--there was nothing simplistic about the thought process. The views that led up to this incident are complex and culturally laden. They did not take place in a void. They took place in a well respected hospital and both of us brought much cultural baggage to the exchange. I believed my life had value while the physician felt it had none. Our respective views were formed well before the incident took place.
Given the above, I vehemently disagree with Phil comment that he does "not believe that when a person chooses to die that he or she contributes to the devaluation of the disabled or the very sick". Phil is correct in that we do have the ability to "adapt" or chose not to "suffer" or to not be alone or decide a life is not worth living. I do not question this. We are entitled to our beliefs. I do question how such decisions are made. I do question whether we are really given a real choice. Disturbing ethical examples abound. For instance, a woman I knew became pregnant recently and she had tests to determine if her child would have Down Syndrome. The test was positive. She was given the results and a business card with a scheduled abortion date. Is this really a choice? Statistics demonstrate well over 90% of women choose abortion over having a child with Down Syndrome. To me, this is perilously close to a form of modern day Eugenics. Does using the word Eugenics make me an extremist or do I hold a simplistic viewpoint for using the word? I think not. Let me use one more example. A young man or woman in their early twenties is in a car accident. Suddenly they must learn to adapt to a high level spinal cord injury. How will this person adapt or will they choose not to adapt? Will this young person be told about sip and puff power wheelchairs and the world of adaptive sports? Will this person meet another well adjusted high level quadriplegic who is married and has children? I doubt it. I think it is far more likely this person will be shipped to a rehab center and quietly sent to a nursing home weeks or months later. Perhaps this person will become like Christina Symanski who chose to die. Again, I ask the question why. Why do some people choose to die? Why are some encouraged to die? Why do we have the resources to end the lives of those with a disability and in fact laud such people for their courageous actions? Meanwhile people like me, those that choose to live life to the fullest encounter discrimination decades after the ADA was passed. People like myself, disenfranchised and without power, are perceived to be an economic burden. Theoretically I share the same civil rights as others but I do not live in the world of theory. I live in a world that is hostile to my inclusion. I live in a world where I am repeatedly told I am a difficult person. Why am I difficult? I am difficult because I assert my civil rights. I point out injustices that make others uncomfortable. I am not silent. I am an uppity cripple. Here the obvious allusion is to so called uppity niggers that asserted their rights, civil rights no person would ever question today. Well, I am not near there yet. My civil rights are open to debate.
In all seriousness, it is very hard to express how hard it is for me and others with a disability to simply leave our homes. I know I will be stared at. I know I will encounter needless architectural obstacles. I know people will say demeaning things to me. Worse yet, none of these people that thoughtlessly violate my civil rights consider themselves to be bigoted. They are just "curious", "interested" or want to share their thoughts me. No consideration is given to my life, the inability to ever fit within the mainstream. I am public property. My existence open to good natured debate. Maybe this makes me an extremist. Perhaps Elizabeth is correct. I do live an extreme life. People with a disability are socially isolated. People with a disability are unemployed in overwhelming numbers. People with a disability are far more likely to be uneducated. People with a spinal cord injury like mine are less likely to marry and have children. People with a disability often cannot access the health care system. People with a disability are likely to live in an institution. I could go on but my point is clear. I do in fact live an extreme life.
Choosing to Die has Ramifications
Monday, June 11, 2012
Last night I read an editorial in the Spokesman-Review by Curtis Johnson. Mr. Johnson has ALS and it is rapidly progressing. He will die in the near future and he is not pleased with the Death with Dignity laws--see "Put Real Dignity in Choice to Die". There are two thrusts to Mr. Johnson's editorial. First, the fact the lethal prescription in the state of Washington must be self administered which in Mr. Johnson's opinion renders the law useless for those who need it. Mr. Johnson noted:
"This leaves patients with the choice of ending their lives prematurely or crossing that threshold where they won�t be able to, thus damning them to a lingering end of dependence, misery and pain. Left with this choice, I must go with prematurely ending my life."
The second point raised by Mr. Johnson concerns organ donation. He believes his organs could help others who will die waiting for a life saving transplant. He notes:
"Although my motor neurons are wasted, only my muscle tissue is affected. Otherwise I�m a perfectly healthy 55-year-old male. I exercised daily. My blood pressure is still 110/70, and my heart rate a steady 70. I have perfectly functioning lungs, kidneys, heart and liver. There are candidates out there who could use my organs to save their lives. But even as a living donor, I am excluded from donating anything".
For those unfamiliar with assisted suicide legislation, likely the vast majority who will read Mr. Johnson's editorial, will be persuaded by his words. Mr. Johnson taps into very basic assumptions about disability and the end of life. For example, disability is a fate worse than death and that death is preferable when faced with a fatal condition like ALS. Mr Johnson wrote:
"I have become trapped inside a motionless body, a living mummy, a burden to those around me. The list of things I can�t do grows longer each day. My core is almost gone, and soon my arms and legs will become completely detached. Most of my muscles visibly vibrate 24/7. All that constant contraction causes perpetual fatigue and tension headaches. My doctor tells me ALS is a painless disease and that there is no reason to consider suicide. Maybe I�m just a wimp.
"This leaves patients with the choice of ending their lives prematurely or crossing that threshold where they won�t be able to, thus damning them to a lingering end of dependence, misery and pain. Left with this choice, I must go with prematurely ending my life."
The second point raised by Mr. Johnson concerns organ donation. He believes his organs could help others who will die waiting for a life saving transplant. He notes:
"Although my motor neurons are wasted, only my muscle tissue is affected. Otherwise I�m a perfectly healthy 55-year-old male. I exercised daily. My blood pressure is still 110/70, and my heart rate a steady 70. I have perfectly functioning lungs, kidneys, heart and liver. There are candidates out there who could use my organs to save their lives. But even as a living donor, I am excluded from donating anything".
For those unfamiliar with assisted suicide legislation, likely the vast majority who will read Mr. Johnson's editorial, will be persuaded by his words. Mr. Johnson taps into very basic assumptions about disability and the end of life. For example, disability is a fate worse than death and that death is preferable when faced with a fatal condition like ALS. Mr Johnson wrote:
"I have become trapped inside a motionless body, a living mummy, a burden to those around me. The list of things I can�t do grows longer each day. My core is almost gone, and soon my arms and legs will become completely detached. Most of my muscles visibly vibrate 24/7. All that constant contraction causes perpetual fatigue and tension headaches. My doctor tells me ALS is a painless disease and that there is no reason to consider suicide. Maybe I�m just a wimp.
I am a social creature by nature, a party lover, invariably the last to leave. Now that my speech has lost its volume and become incoherently garbled, I find myself irrelevant in social situations. This isolation is every bit as painful as the physical pain and frustration imposed by ALS. Now, too, I am losing power in my arms and hands such that I type with one gnarled index finger and can no longer even pick up my iPhone."
Mr. Johnson is not a wimp. Mr. Johnson, like all of us, was not prepared to learn how to adapt to his condition. But adapt we do. In fact the vast majority of us when faced with a life altering disability or those who are forced to deal with end of life issues adapt. Some struggle for years with Depression while others rapidly move on. Some are ruined financially due to medical bills that insurance refuses to cover. Some die gracefully. Some rage at death and become embittered. Some people with a disability adapt with grace and beauty. Very, very few choose to die--they are the exception not the rule. And here is where I am left angry. Why is it that only people like Mr. Johnson who want to die are given support. Why is it that paralyzed people that want to walk are lauded while those who adapt to paralysis and want adaptive devices to empower them are perceived as a social burden or an economic drain.
When I read Mr. Johnson's editorial here is what I thought: why has no one spoken to him about brain scape or the myriad of ways he can communicate. I have met many respirator dependent quadriplegics, some with ALS, who lead rich and rewarding lives. Mr. Johnson can continue to have a rich and vibrant social life. While his condition is indeed fatal I see no reason why he cannot enjoy his life in the here and now. His words above are based on an implied social fallacy: life with a disability is inherently less, it is an existence that lacks dignity. People with a disability are not social beings. People with a disability cannot or do not socialize and are a burden on society. No one delves into the why behind this faulty premise. For example, I do not visit any of my friends homes--friends who do not have a disability that is because I cannot enter their home. Steps abound as do needless architectural barriers at work, stadiums, office buildings, hospitals, athletic facilities, libraries, and the list goes on and on. This is not a medical problem this is a social problem. American society does not value the existence of people like me and Mr. Johnson. The physical environment is built specifically for those that are bipedal. Access issues are an after thought--something that must be included because the law states it must be so. Such access is not valued--it is merely a box that must be checked off.
As for organ donation, Mr. Johnson's words sent chills down my spine--the chills only went to T-3, my level of paralysis and sort of wander down my side (a very strange sensation). Mr. Johnson's words are simply dangerous. What would happen to any individual with a high cervical spinal injury and more generally any spinal cord injury? Would this person become the ideal organ donor? Imagine if you were suddenly paralyzed, had never met a person with a spinal cord injury and knew nothing about disability. What would you think if you were told you will be paralyzed for the rest of your life? Would you be happy? Hardly. What if news of paralysis was followed by "you can be an organ donor and never live with paralysis". I have no doubt many would choose to donate their organs and die. This decision would be one based on fear and ignorance. Yes, disability may indeed be a fate worse than death. None of this even broaches the economic implications of long term disabling conditions. Simply put, it is expensive to be disabled. The other day I figured out that in the last 35 years I have spent nearly $25,000 on Roho Cushions alone. I shudder to think of what I have spent on basic necessities like catheters, wheelchairs, tires, inner tubes, medications, home renovations etc. Being paralyzed is an ever present economic drain. Would some choose to die rather than go into debt, declare bankruptcy and be forced to live in a nursing home? Worse yet, would organ brokers seek out paralyzed people. As Mr. Johnson notes our organs are perfect. Perhaps this sounds far fetched--too much like Soylent Green the classic science fiction film. I am not so sure. I am after all told once or twice a year by a total stranger that they would prefer to be dead than use a wheelchair. Don't take my word for it, Dr. Phil just had a show in which he advocated parents should be allowed to kill their disabled children. This was deemed "mercyful". Frankly, I fear such mercy. I truly fear for my life when I enter an institution such as a hospital. I am fearful not of death but some "caring soul", a "professional" who thinks I have suffered enough.
Cant' You Walk a Little Bit?
Friday, June 8, 2012
I flew from New York JFK Airport to San Jose recently. As usual, the experience was trying at best. Flying in the post 9/11 era is miserable. Security is designed to humiliate passengers into being subservient. Airlines nickel and dime passengers at every opportunity and there is a fee for everything. None of this is news to anyone who has flown in the last few years. I am not your typical passenger and my experience is well out of the norm. I would love to have an ordinary experience�that is to be subject to routine degradation. But my degradation surpasses what bipedal people will ever experience. If one uses a wheelchair you are sure to have a negative experience flying�it is the norm.
The hardest part of flying for me is the most basic�getting on and off the plane. Flying home to New York from San Jose on the Red Eye led to the following encounter. In terms of problems one can encounter this was minor. It made me yearn to be bipedal.
We have landed and the door to the plane is open. People begin to stream out of the plane and the stewardess states to the ground crew �We have one straight back, he has his own wheelchair in the belly of the plane�. A declarative statement. No problem you may think. Ten minutes later I hear the ground crew ask the stewardess �How many wheelchairs do you need?� The reply, �One straightback and he has his own wheelchair.� The flow of exiting passengers is now a trickle�parents with kids and seasoned travelers who just woke up. The ground crew looks into the plane and asks �How many wheelchairs?� Again, the reply, �One straightback, he has his own chair.� Another ten minutes go by. At least twenty minutes have passed since the stewardess requested a straightback. Every passenger has exited the plane. The pilot and co-pilot have exited as well. Three women, ground personnel, look in at me. They stare, say nothing and exit. They return moments later with an airline wheelchair wide enough to sit two people. Without preamble I am told, commanded really, �Get in this chair�. The stewardess again states �He needs a straighback and he has his own chair�. Ground personnel look perplexed, do not reply and exit the plane again. Minutes later they return. They have my wheelchair now. Again, the ground personnel state �Get in the wheelchair�. Yet again the stewardess states �He needs a straighback. That is his wheelchair outside.� I look at her, she looks at me we both say �JFK sucks�. The ground personnel look hopelessly bewildered. I am loudly told �Just walk a little bit to the wheelchair.� Maybe they think in addition to being paralyzed I am perhaps deaf. I state that I need a straightback. Ground personnel are taken aback. I am asked �You can�t walk a little bit?� No, I reply. The stewardess says �He needs a straightback�. Yes, I say �I need a straightback�. Utter confusion reigns supreme. Ground personnel are befuddled and one person asks the stewardess, not me, �You mean he cannot walk at all? What do we do? How do we get him out of the seat?� Stunned silence ensues. I take a deep breath and remain calm. I state yet again I need a straightback. A look of confusion mixed with fear comes across the ground personnel and they ask me �Are you certain you cannot walk a little bit?� The stewardess and I just look at one another. In unison we say �we need a straightback�. Completely perplexed ground personnel leave the plane. A few minutes go by. Not only have all the passengers left but the cleaning crew is on board the plane and they are looking at me and wondering why the hell is this guy still on the plane. Ground personnel return and they have the straightback. This tiny wheelchair is placed next to my aisle seat. I transfer into the straightback, position straps against my legs. The straightback is pushed all of the six or eight feet and then I transfer into my wheelchair. Time elapsed since landing: 45 minutes.
Casey Martin Qualifies for the US Open
Thursday, June 7, 2012
I have been relatively silent in the past two weeks. The reasons are pretty simple. I have been away from home for much of the time. Yesterday I was stuck in the car for the entire day. Classifying myself as "stuck in the car" is misleading--I love long drives. The longer the better in fact. Being in the car enables me to listen to the radio for hours. I have eclectic tastes--I listen to horrible local AM stations, especially talk radio. I listen to much music, mostly pre corporate rock. I listen to NPR outlets. Yesterday much of my time was spent listening to sports talk. I find this sort of dialog mind numbing. However, yesterday was different. Casey Martin is back in the news. Casey Martin is unknown outside of golfing and his few minutes of fame took place when he sued the PGA Golf Tour in the late 1990s. Martin has a physical disability that makes walking inherently difficult and he believed he had the right to use a golf cart under the ADA on the PGA Tour. The use of a gold cart was in his opinion a "reasonable accommodation". The PGA and many well-know golfers vehemently disagreed. Martin won his case that was decided by the Supreme Court. In 2001 Martin was national news. What was and was not a "reasonable accommodation" was widely discussed in the popular press. Sport fans were not happy. The PGA was predictably stuffy. What I remember most circa 2001 was friends asking me what I thought. I felt Martin was correct--using a golf cart was very much within the realm of the ADA. Using a golf cart was indeed a "reasonable accommodation". This was not a popular position to take. As I recall, people that engaged me wanted to know where do we draw the line? Was walking not an integral part of the game of golf? I believed then as I do now that Martin's use of a cart did not give him an unfair advantage nor did it change the character of the sport. In Martin's case, it simply empowered him to play the game at the elite level he had achieved.
I have not thought about Martin for ten years. He glided into obscurity after he failed to qualify for the PGA Tour. Apparently he has forged a new career as a golf coach in Oregon where he grew up and went to college. Against all odds, Martin qualified for the US Open this week. This has rekindled a debate about whether the use of a golf cart is indeed a "reasonable accommodation." In 2001 the attacks on Martin by professional golfers was vicious. Some classified his use of a golf cart as outrageous. Walking is part of the game! If you doubt this, many said, try walking 18 holes of golf. Fast forward eleven years and such inflammatory comments are hard to find in the mainstream press. Perhaps the last decade that has witnessed a veritable revolution in adaptive sports has made the general public open to reasonable accommodations of the sort used by Martin and other adaptive athletes. I am not sure this is the case. I would suggest discrimination is alive and well. I would also contend the fact Martin is a long shot at best to win is another variable. I have noticed that no one complains when a person with a disability participates against those without a disability--provided they lose badly--as in come in dead last. When a person with a disability actually wins is when other athletes and the general public complain. All of a sudden the athlete with a disability is not so "inspiring". Instead, the athlete that has a "reasonable accommodation" is perceived to have an unfair advantage. Oscar Pistorius is the best example of this line of reasoning. When he was winning in competitions against other amputees one and all were impressed. When he ran and lost against athletes with two legs no one complained. When he started defeating athletes who had legs all of a sudden he was not inspiring in the least. Instead his prostheses amounted to cheating.
The mainstream press is not interested in Martin. His participation in the US Open is filler. Golfing magazines and other specialist publications remain hostile. For instance, I just read the opening to an article "US Open and the Casey Martin Question" that began: "As we ramp up towards the U.S. Open that will be played at the Olympic Club, I have to get something off my chest: Casey Martin should not be playing at The Open this year." The author notes that Martin is "afflicted" with a birth defect that makes walking 18 holes of golf too painful. Under the guise of the ADA, the Supreme Court decided walking was not an integral part of the game and that Martin could use a golf cart. Blasphemy! "Anyone who has played 18 holes will tell you walking is certainly a portion of the four-day tournament". Jack Nicklaus, Arnold Palmer, and Tiger Woods agree! Using a cart is akin to destroying the integrity of the game. Worse yet, why should Martin be allowed to have "special rules"? Why should Martin "ride easily in a cart for four days in the name of fairness". The author of this opinion piece concludes: " the world is not fair. I am sorry to spoil it for you. As many times as we try to even the playing field we are doing it at another�s expense".
The above line of reasoning is classic. We Americans are all born equal. We are rugged individualists. We pull ourselves up by our boot straps. Some people are not so fortunate. We have "special schools" and "special education" for them. We provide such accommodations out of the goodness of our hearts. We do not to consider individuals with a disability to be equal to the all powerful bipeds for the author notes life is not fair. And my goodness what could be more unfair than a disability! Thus Martin is not only a bad sport but hopelessly selfish. He is destroying the integrity of the game. He is ruining the sport for all. To me, this line of reasoning is twisted, hopelessly backwards. It is also common place. It makes me wonder exactly what has the ADA accomplished in the last 20 years. On bad days, I shake my head and conclude the ADA has done nothing. On good day, I think the exact opposite. The truth I suspect lies somewhere between these polar opposites. What remains my constant refrain is the underlying problem with not only the ADA but all legislation meant to empower people with a disability--the total lack of a social mandate. Culturally people object to the notion of any so called "reasonable accommodation". This runs counter to cultural ideals we learn and incorporate without thinking. We Americans are all equal. We must treat one and all equally. One succeeds through hard work and hard work alone. Special accommodations are bad--it undermines our entire culture. Anyone with an ounce of common sense can read through this cultural ideal as utter fantasy--a fantasy we accept and propagate. The presence of people with a disability upsets the cultural balance. It is a reminder that "life is not fair". Lost in this cultural quagmire is the simple fact that disability rights are civil rights. Now that concept is worth thinking about and supporting.
I have not thought about Martin for ten years. He glided into obscurity after he failed to qualify for the PGA Tour. Apparently he has forged a new career as a golf coach in Oregon where he grew up and went to college. Against all odds, Martin qualified for the US Open this week. This has rekindled a debate about whether the use of a golf cart is indeed a "reasonable accommodation." In 2001 the attacks on Martin by professional golfers was vicious. Some classified his use of a golf cart as outrageous. Walking is part of the game! If you doubt this, many said, try walking 18 holes of golf. Fast forward eleven years and such inflammatory comments are hard to find in the mainstream press. Perhaps the last decade that has witnessed a veritable revolution in adaptive sports has made the general public open to reasonable accommodations of the sort used by Martin and other adaptive athletes. I am not sure this is the case. I would suggest discrimination is alive and well. I would also contend the fact Martin is a long shot at best to win is another variable. I have noticed that no one complains when a person with a disability participates against those without a disability--provided they lose badly--as in come in dead last. When a person with a disability actually wins is when other athletes and the general public complain. All of a sudden the athlete with a disability is not so "inspiring". Instead, the athlete that has a "reasonable accommodation" is perceived to have an unfair advantage. Oscar Pistorius is the best example of this line of reasoning. When he was winning in competitions against other amputees one and all were impressed. When he ran and lost against athletes with two legs no one complained. When he started defeating athletes who had legs all of a sudden he was not inspiring in the least. Instead his prostheses amounted to cheating.
The mainstream press is not interested in Martin. His participation in the US Open is filler. Golfing magazines and other specialist publications remain hostile. For instance, I just read the opening to an article "US Open and the Casey Martin Question" that began: "As we ramp up towards the U.S. Open that will be played at the Olympic Club, I have to get something off my chest: Casey Martin should not be playing at The Open this year." The author notes that Martin is "afflicted" with a birth defect that makes walking 18 holes of golf too painful. Under the guise of the ADA, the Supreme Court decided walking was not an integral part of the game and that Martin could use a golf cart. Blasphemy! "Anyone who has played 18 holes will tell you walking is certainly a portion of the four-day tournament". Jack Nicklaus, Arnold Palmer, and Tiger Woods agree! Using a cart is akin to destroying the integrity of the game. Worse yet, why should Martin be allowed to have "special rules"? Why should Martin "ride easily in a cart for four days in the name of fairness". The author of this opinion piece concludes: " the world is not fair. I am sorry to spoil it for you. As many times as we try to even the playing field we are doing it at another�s expense".
The above line of reasoning is classic. We Americans are all born equal. We are rugged individualists. We pull ourselves up by our boot straps. Some people are not so fortunate. We have "special schools" and "special education" for them. We provide such accommodations out of the goodness of our hearts. We do not to consider individuals with a disability to be equal to the all powerful bipeds for the author notes life is not fair. And my goodness what could be more unfair than a disability! Thus Martin is not only a bad sport but hopelessly selfish. He is destroying the integrity of the game. He is ruining the sport for all. To me, this line of reasoning is twisted, hopelessly backwards. It is also common place. It makes me wonder exactly what has the ADA accomplished in the last 20 years. On bad days, I shake my head and conclude the ADA has done nothing. On good day, I think the exact opposite. The truth I suspect lies somewhere between these polar opposites. What remains my constant refrain is the underlying problem with not only the ADA but all legislation meant to empower people with a disability--the total lack of a social mandate. Culturally people object to the notion of any so called "reasonable accommodation". This runs counter to cultural ideals we learn and incorporate without thinking. We Americans are all equal. We must treat one and all equally. One succeeds through hard work and hard work alone. Special accommodations are bad--it undermines our entire culture. Anyone with an ounce of common sense can read through this cultural ideal as utter fantasy--a fantasy we accept and propagate. The presence of people with a disability upsets the cultural balance. It is a reminder that "life is not fair". Lost in this cultural quagmire is the simple fact that disability rights are civil rights. Now that concept is worth thinking about and supporting.
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