Those interested in disability rights know about the Community Choice Act (HR1670 and S683). Like many, I am a firm believer in community based care and services. Not only does community based care save money, it empowers those that do not want to live in a nursing home. I am not talking about just the elderly. I am thinking of all those that can live independently with a few hours of basic assistance. Does it make any sense to send a person to a nursing home simply because they need assistance getting dressed and bathing? It does in most states because Medicaid provides long term care provided in an institutional setting. This is what ADAPT calls the institutional bias.
Obama and Biden were cosponsors of the Community Choice Act. They spoke of the CCA often. When disability came up on the campaign trail, they often mentioned their strong support for this bill. Obama repeatedly stated that health care reform was needed and that the CCA was going to be part of that. This was great--finally a president was elected that got disability rights and understood why community based care was important. All was great until ADAPT met with Nancy-Ann DeParle, the so called "health care csar" in the administration. ADAPT reported that the Community Choice Act would not be part of the president's health care reform. DeParle told this to ADAPT and I thought no way Obama can do this. He is too smart and more to the point I actually believed him when he said he supported the Community Choice Act. Surely ADAPT misunderstood DePerle and I wondered if chants at demonstrations such as "I'd rather got to jail than die in a nursing home" were helpful. Gosh, what jerk--that is me and Obama. I never should have doubted ADAPT.
The above came to me as I was reading an excellent article in the Times Union by Michael Volkman. Volkman pointed out something I had missed: at the president's White House disabilities page any mention of the Community Choice Act is gone. Instead of strident support Obama has empty platitudes. If I wanted platitudes and "special" services I would have voted Republican. At least with Republicans and conservatives, they are clear that people with a disabilities are not a priority. Their compassion is for "special children" not the adults they become. Disabled kids are ever so special and provide great photo opportunities--this is one thing Palin excelled at.
So what does Obama believe now? States should be encouraged to provide community based services because they are more cost effective and humane. Thank God, we are saved! What a bitter disappointment. Who is going to suffer because Obama failed to live up to his promise to support the CCA? The most vulnerable, those at the greatest risk. The nursing home industry, what Harriet McBryde Johnson called the disability gulag, has won once again.
Saturday, May 16, 2009
Wednesday, May 13, 2009
Disability as a Positive Influence on Life
Disability is bad. No one wants to be blind, deaf or paralyzed. Common sense dictates this normative belief. The limitations associated with a physical deficit are bad. Sure we can compensate, adapt, and we humans are very good at adapting, but no one wants to acquire a disability. Is this not why we humans dread old age? Disability, the lack of ability, is associated with old age. Old people are slow, feeble, and too many experience dementia. Wheelchairs? A fate worse than death. I would rather be dead than paralyzed. Blind? Oh no, I could never see a sunset and movies would be pointless. Deaf? I would be unable to connect and communicate with others. What does disability on the broadest of the term create in the minds of others? Negative connotations, limits, the need to "overcome", and for some dread. In extreme cases people even commit suicide rather than learn how to live life with a disability. Think Daniel James and his "loving" parents.
The above may be boring, so ordinary it does not merit thought. Sorry, but this thought process is all wrong. After thirty years of wheelchair use this is what I think when I see another paralyzed person: are they employed, married, do they have a car, if so what kind, and where do they live? If the person in question is married, employed, owns a house, and has a family I am sure of one thing: they are skilled problem solvers. This thought came to the forefront of my mind when I read a blog I had never come across, WheelchairJunky, written by Mark E. Smith. The first entry I read concerned the inherent problems associated with airline travel when one uses a wheelchair. Rather than focus on the myriad of ways airlines have consistently provided dreadful service to passengers that use a wheelchair the post noted the following:
"The fact is, in order to survive with disability, we become master problem-solvers. In the simplest terms, when we can’t perform a task one way, we have to find another way to do it – that is, we emotionally, mentally, and physically cope – and, when we do, not only do we move forward, but we also create a legacy of accomplishment and confidence. This same strategy proves invaluable to every aspect of our life. See, disability intrinsically teaches us that when when problems arise, and we face them head on, we ultimately find solutions and success."
Adapt, cope and compensate. This can do only one thing--enhance the quality of one's life. Thus disability need not always be considered a bad thing. I have not just adapted but utilized my disability to improve my life. My paralysis offers advantages physically and socially. These advantages can be large and small, important and inconsequential. For instance, I use the spasms in my body to balance myself and hold my wheelchair in place when I transfer to and from my wheelchair. I never tire when I spend an entire day in the museum moving long distances. Because some people do not know how to interact when I am present I have learned how settle down people and make them feel comfortable thereby improving my social skills. Since I encounter baseless bigotry I am skilled at asserting my rights. I am able to form a strong relationship with the college students I teach because my wheelchair negates the distance they feel from other professors. When I meet another paralyzed person it is possible to have an intimate conversation almost immediately. These are just a few of the positives that spring to mind. There are dozens of others if not hundreds, even, thousands. Is it any wonder than I am Disabled and Proud?
The above may be boring, so ordinary it does not merit thought. Sorry, but this thought process is all wrong. After thirty years of wheelchair use this is what I think when I see another paralyzed person: are they employed, married, do they have a car, if so what kind, and where do they live? If the person in question is married, employed, owns a house, and has a family I am sure of one thing: they are skilled problem solvers. This thought came to the forefront of my mind when I read a blog I had never come across, WheelchairJunky, written by Mark E. Smith. The first entry I read concerned the inherent problems associated with airline travel when one uses a wheelchair. Rather than focus on the myriad of ways airlines have consistently provided dreadful service to passengers that use a wheelchair the post noted the following:
"The fact is, in order to survive with disability, we become master problem-solvers. In the simplest terms, when we can’t perform a task one way, we have to find another way to do it – that is, we emotionally, mentally, and physically cope – and, when we do, not only do we move forward, but we also create a legacy of accomplishment and confidence. This same strategy proves invaluable to every aspect of our life. See, disability intrinsically teaches us that when when problems arise, and we face them head on, we ultimately find solutions and success."
Adapt, cope and compensate. This can do only one thing--enhance the quality of one's life. Thus disability need not always be considered a bad thing. I have not just adapted but utilized my disability to improve my life. My paralysis offers advantages physically and socially. These advantages can be large and small, important and inconsequential. For instance, I use the spasms in my body to balance myself and hold my wheelchair in place when I transfer to and from my wheelchair. I never tire when I spend an entire day in the museum moving long distances. Because some people do not know how to interact when I am present I have learned how settle down people and make them feel comfortable thereby improving my social skills. Since I encounter baseless bigotry I am skilled at asserting my rights. I am able to form a strong relationship with the college students I teach because my wheelchair negates the distance they feel from other professors. When I meet another paralyzed person it is possible to have an intimate conversation almost immediately. These are just a few of the positives that spring to mind. There are dozens of others if not hundreds, even, thousands. Is it any wonder than I am Disabled and Proud?
Monday, May 11, 2009
The Hockey News Can Do It Right
I am a huge hockey fan. I follow the New York Rangers carefully and my son tells me I know way too much about the players. While I don't have the same passion since the Rangers were eliminated, I still enjoy watching the Stanley Cup playoffs. I also enjoy reading the Bible--of hockey--the Hockey News. One of my favorite parts of the Hockey News is "Beyond the Spotlight", a feature article about past and present hockey players. When I opened up the most recent issue I groaned when I saw the headline "Admirable Adjustment" by Anthony Murphy. I thought, oh no, here comes another super crip overcoming impossible odds story that makes my blood boil. Aside from the bad headline, the article is first rate. It is about Matt Cook, a former Jr. A player for the Bonnyville Pontiacs of the Alberta League who was diagnosed with cancer and had a leg amputated. This is where the story begins not ends.
The Hockey News story points out that it would be "easy to let sympathy for a person's plight draw attention away from the achievements of a pure athlete". The focus here is on the athlete, Matt Cook, and what he has accomplished since meeting Paul Rosen, veteran goaltender for the Canadian men's national sledge hockey team. Sledge hockey is not that different than stand up hockey in theory and practice. It is a fast passed hard hitting game. Cook's transition to sledge hockey was difficult but once he mastered the required skills he excelled. In fact he is the only rookie on Canada's roster for the 2009 Sledge Hockey World Championship which began last week.
Please note what was not discussed above: disability. Instead, a major media outlet got a story right. Sure we are talking about hockey, not one of the three big time sports in the USA. But for Canadians, hockey is big business and fans follow the game with passion. In the story about Cook one learns about his development as a player and the basic rules of sledge hockey. The focus is squarely on what he has and hopes to achieve. The article ends with the following comment by Cook: "Its about being able to get up after having a two minute shift , throwing a hit and your lying on your back, then making it to the bench". To me, this sounds like your archetypical hard ass and tough as nails hockey player who loves the game. This is the sort of coverage athletes in adaptive sports expect and deserve. It is also gives me hope that some smart television executive at a network like Universal Sports will discover adaptive sports and start broadcasting them. The winter X Games have done a great job in this regard and the mono ski race is now a hot ticket and popular event. I see no reason why other adaptive sports cannot have a broad appeal--the athletes are all playing for the love of the game. This is what athletics is supposed to be about--the game.
The Hockey News story points out that it would be "easy to let sympathy for a person's plight draw attention away from the achievements of a pure athlete". The focus here is on the athlete, Matt Cook, and what he has accomplished since meeting Paul Rosen, veteran goaltender for the Canadian men's national sledge hockey team. Sledge hockey is not that different than stand up hockey in theory and practice. It is a fast passed hard hitting game. Cook's transition to sledge hockey was difficult but once he mastered the required skills he excelled. In fact he is the only rookie on Canada's roster for the 2009 Sledge Hockey World Championship which began last week.
Please note what was not discussed above: disability. Instead, a major media outlet got a story right. Sure we are talking about hockey, not one of the three big time sports in the USA. But for Canadians, hockey is big business and fans follow the game with passion. In the story about Cook one learns about his development as a player and the basic rules of sledge hockey. The focus is squarely on what he has and hopes to achieve. The article ends with the following comment by Cook: "Its about being able to get up after having a two minute shift , throwing a hit and your lying on your back, then making it to the bench". To me, this sounds like your archetypical hard ass and tough as nails hockey player who loves the game. This is the sort of coverage athletes in adaptive sports expect and deserve. It is also gives me hope that some smart television executive at a network like Universal Sports will discover adaptive sports and start broadcasting them. The winter X Games have done a great job in this regard and the mono ski race is now a hot ticket and popular event. I see no reason why other adaptive sports cannot have a broad appeal--the athletes are all playing for the love of the game. This is what athletics is supposed to be about--the game.
Medical Ethics are Doomed to Fail and We all Suffer
This weekend was great--I got my kayak out on the water for the first time Saturday. I had a fun and the highlight was seeing a bald eagle. I wanted to kayak on Sunday but it was too windy. Instead I went for a drive to scope out where I can access to the Hudson River (getting to the water is the hardest part of kayaking). While I was out I decided to figure out where the Hastings Center was located as I knew it was near the Hudson River. For quite some time I have been reading the Hastings Center Report. The Hastings Center is one of the foremost centers for medical ethics and has an outstanding reputation in academia. While I disagree with much of what is produced by the scholars in residence, I cannot dispute their reasoning. The work published is top notch and thought provoking. Earlier this year I was inspired to apply for a short term visiting scholar position. Much to my chagrin I was accepted. I had thought my strident views and support of disability rights as well as comments about Ashley X over the last two years would preclude my acceptance. I was wrong and look forward to next January when I will start my work at the Hastings Center.
At lunch time I found a great place to eat that overlooked the Hudson river and spent my meal finishing up a book I thoroughly enjoyed. The book in question, A life Worth Living, by Robert Martensen, a physician, historian, and bioethicist is worth reading multiple times. Martensen is a wonderful writer. He has the ability to take a complex subject, provide a specific case study, and analyze the larger ramifications of the medical decisions made. He obviously cares deeply about the patients he treats, those he works with, and is by no means a hack for what we call the health care industry. What Martensen did, what I suspect is his gift, was to make me think and evaluate the cultural implications of high tech medicine. In the olden days when I was sick high tech medicine did not exist. Children and adults with neurological conditions died at an alarming rate. Neurology was in its infancy, pun intended, and the ethical conundrums we are faced with today did not exist. Thus Martensen reinforced something anthropologists have known and written about for a long time: culture change always lags behind technological change. This is particularly evident in hospitals today where ethical issues pertaining to life with a disability are becoming increasingly common and difficult to entangle.
Like Martensen, I think our health care system is profoundly flawed and that people needlessly suffer and die. Those most vulnerable include people with a disability, children, and the elderly. The fact is being young, old or disabled is costly. Only one group of this troika is valued--children. The elderly and disabled are not valued and too often shipped off to a nursing home or rehab center. This undoubtedly saves lots of money but can also needlessly hasten the death of people sent to what Harriet McBryde Johnson called the disability gulag. Organizations like ADPAT, Not Dead Yet, and the Disability Education Rights and Defense Fund work hard to insure the elderly are not encouraged to take advantage of assisted suicide laws that have passed in some states. ADAPT champions the Community Choice Act and seeks to eliminate the nursing home bias. What these organizations do not advocate is the the rights of children. This is the job of parents and the vast majority do a good job when confronted with caring for a profoundly ill child. Parents are given an exceedingly wide latitude in medical settings. But some parents do not excel when confronted with a sick child, one who will have life long disabilities. A case in point is the Ashley X whose story I have followed and written about for two years.
What struck me about Ashley X is the bewildered initial response of the doctors that performed what Ashley's parents dubbed the "Ashley Treatment". People were outraged by what was done to Ashley X--myself included. I wondered how parents and doctors could device such an elaborate and medically unnecessary protocol. Two things have remained at the forefront of my mind: first, the Ashley Treatment would not be considered for any other human except children that have profound physical and cognitive deficits. What does this say about our culture and people with physical and cognitive disabilities? Second, how could the men and women that formed a medical ethics committee approve such a radical treatment? Surely someone must have pointed out there are social and practical answers to the parents concerns about Ashley X. The first point is fodder for debate while the second is not. The medical ethics committee failed Ashley X. They were in my opinion swayed by Ashley X's powerful father who advocates on behalf of other "Pillow Angels" via a highly public blog. This is, of course, easy for me to write. I was not confronted with two determined parents and peers who came up with the idea of attenuating the growth of a child not to mention giving her hormones and removing her uterus and breasts. As I have written before this was a radical intervention to solve a problem that is social.
The question remains: why, why didn't the medical ethics committee say no? This question gets me back to Martensen's book and his discussion of how the most vulnerable people are treated. Martensen details his experience as a "chief ethics officer" at a major hospital. It was not a job he wanted but rather one that was added onto his existing responsibilities. The position was in his estimation created to help the hospital recover from a previous ethics scandal. Much to Martensen's surprise the position came with no power or clout. There was not a system in place to prevent future transgressions. Moreover, no one, doctors and administrators in particular, wanted a committee evaluating their morals and ethics. Why then do these commitees exist? According to Martensen
"Unless something goes seriously wrong--or rather, unless something serious goes wrong that the public might find out about--an ethicist's actual functions tend to be ornamental and cosmetic. During the two years I held the post of chief ethics officer... I lived with the expectation that if something from the organization's murk should bubble into public view, I would at best be charged with cleaning it up, at worst be the designated fall guy".
This revelation is deeply distressing. It also makes me wonder about the value of informed consent and internal review boards. Do they exist to insure ethical decisions are carefully considered or do they merely legally protect an institution from potential scandal. If Martensen is correct, the actions or lack of action taken by the ethics committee in Seattle that approved the Ashley Treatment was understandable. It also makes me wonder if the agreement the hospital reached with the WPAS was designed to protect children like Ashley or simply cover the institution's legal liability. These are the sort of issues I look forward to tackling when I am at the Hastings Center. It is also why I feel a little bit like a Christian about to be thrown in with the lions.
At lunch time I found a great place to eat that overlooked the Hudson river and spent my meal finishing up a book I thoroughly enjoyed. The book in question, A life Worth Living, by Robert Martensen, a physician, historian, and bioethicist is worth reading multiple times. Martensen is a wonderful writer. He has the ability to take a complex subject, provide a specific case study, and analyze the larger ramifications of the medical decisions made. He obviously cares deeply about the patients he treats, those he works with, and is by no means a hack for what we call the health care industry. What Martensen did, what I suspect is his gift, was to make me think and evaluate the cultural implications of high tech medicine. In the olden days when I was sick high tech medicine did not exist. Children and adults with neurological conditions died at an alarming rate. Neurology was in its infancy, pun intended, and the ethical conundrums we are faced with today did not exist. Thus Martensen reinforced something anthropologists have known and written about for a long time: culture change always lags behind technological change. This is particularly evident in hospitals today where ethical issues pertaining to life with a disability are becoming increasingly common and difficult to entangle.
Like Martensen, I think our health care system is profoundly flawed and that people needlessly suffer and die. Those most vulnerable include people with a disability, children, and the elderly. The fact is being young, old or disabled is costly. Only one group of this troika is valued--children. The elderly and disabled are not valued and too often shipped off to a nursing home or rehab center. This undoubtedly saves lots of money but can also needlessly hasten the death of people sent to what Harriet McBryde Johnson called the disability gulag. Organizations like ADPAT, Not Dead Yet, and the Disability Education Rights and Defense Fund work hard to insure the elderly are not encouraged to take advantage of assisted suicide laws that have passed in some states. ADAPT champions the Community Choice Act and seeks to eliminate the nursing home bias. What these organizations do not advocate is the the rights of children. This is the job of parents and the vast majority do a good job when confronted with caring for a profoundly ill child. Parents are given an exceedingly wide latitude in medical settings. But some parents do not excel when confronted with a sick child, one who will have life long disabilities. A case in point is the Ashley X whose story I have followed and written about for two years.
What struck me about Ashley X is the bewildered initial response of the doctors that performed what Ashley's parents dubbed the "Ashley Treatment". People were outraged by what was done to Ashley X--myself included. I wondered how parents and doctors could device such an elaborate and medically unnecessary protocol. Two things have remained at the forefront of my mind: first, the Ashley Treatment would not be considered for any other human except children that have profound physical and cognitive deficits. What does this say about our culture and people with physical and cognitive disabilities? Second, how could the men and women that formed a medical ethics committee approve such a radical treatment? Surely someone must have pointed out there are social and practical answers to the parents concerns about Ashley X. The first point is fodder for debate while the second is not. The medical ethics committee failed Ashley X. They were in my opinion swayed by Ashley X's powerful father who advocates on behalf of other "Pillow Angels" via a highly public blog. This is, of course, easy for me to write. I was not confronted with two determined parents and peers who came up with the idea of attenuating the growth of a child not to mention giving her hormones and removing her uterus and breasts. As I have written before this was a radical intervention to solve a problem that is social.
The question remains: why, why didn't the medical ethics committee say no? This question gets me back to Martensen's book and his discussion of how the most vulnerable people are treated. Martensen details his experience as a "chief ethics officer" at a major hospital. It was not a job he wanted but rather one that was added onto his existing responsibilities. The position was in his estimation created to help the hospital recover from a previous ethics scandal. Much to Martensen's surprise the position came with no power or clout. There was not a system in place to prevent future transgressions. Moreover, no one, doctors and administrators in particular, wanted a committee evaluating their morals and ethics. Why then do these commitees exist? According to Martensen
"Unless something goes seriously wrong--or rather, unless something serious goes wrong that the public might find out about--an ethicist's actual functions tend to be ornamental and cosmetic. During the two years I held the post of chief ethics officer... I lived with the expectation that if something from the organization's murk should bubble into public view, I would at best be charged with cleaning it up, at worst be the designated fall guy".
This revelation is deeply distressing. It also makes me wonder about the value of informed consent and internal review boards. Do they exist to insure ethical decisions are carefully considered or do they merely legally protect an institution from potential scandal. If Martensen is correct, the actions or lack of action taken by the ethics committee in Seattle that approved the Ashley Treatment was understandable. It also makes me wonder if the agreement the hospital reached with the WPAS was designed to protect children like Ashley or simply cover the institution's legal liability. These are the sort of issues I look forward to tackling when I am at the Hastings Center. It is also why I feel a little bit like a Christian about to be thrown in with the lions.
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