Growing up I loved baseball. I collected baseball cards, memorized statistics of my favorite players and team, the New York Mets. I played baseball at every opportunity and was a pretty good pitcher, My hero as a child was Tom Seaver, a highly touted prospect signed by the Mets when they were truly the worst team in baseball. One of my first indelible memories was the 1969 World Series. The Mets won the series in seven games and my father had eight tickets to the game. I did not go because I was sick but my siblings brought home a patch of grass from the outfield. I was allowed to plant the grass in our front yard, a ceremony that helped me over come my grief that I did not get to see the game.
The point of the above is that more than just a personal element of my life, baseball reflects the fabric of American society. This observation is far from original and came to me this weekend when I realized we were nearing the 70th anniversary of the most famous speech ever made in baseball. Here I refer to Lou Gehrig's brief farewell speech made July 4, 1939. Aside from Gehrig's quiet dignity, reputation for hard work, including playing 2,130 games in a row, his speech became legend in part because of Gary Cooper. The film, Pride of the Yankees, became a classic, watched by millions of people, myself included. This past weekend baseball honored Gehrig at 15 games where his speech was was read during the 7th inning stretch. This, I thought, was a weak honor at best and got me thinking about Gehrig's legacy.
Most know Gehrig died shortly after he retired. In fact he died within two years of his retirement from ALS, amyotrophic lateral sclerosis, widely known as Lou Gehrig's disease. ALS remains a devastating diagnosis and is inevitably a fatal condition. Indeed Gehrig never got to celebrate his 38th birthday. When Gehrig died people were stunned. How could the Iron Man of baseball die at such a young age? Gehrig was thought to be indestructible, tough as nails. Gehrig was tough but no person can overcome ALS. Overcome, a world I truly despise when it comes to disability. Why do I despise the word overcome? In terms of disability there is nothing to overcome. If I must overcome anything, it is bigotry and ignorance. Thus I am torn by Gehrig's legacy in disability history. Through no fault of his own, he has become a symbol of the belief that anyone can be struck down by disability in the prime of their life. That is disability is a tragedy, one that can be fatal as in Gehrig's case, or just as bad, render one permanently disabled. This sort of antiquated thinking is as prevalent today as it was in 1939. It is effectively used to raise money for ALS research and a host of other causes. On the positive side, Gehrig put a face on an obscure disease, one that was not studied because it was inevitably fatal. Gehrig may or may not have known he was dying. But what he did without question was live life to the fullest. For some with ALS, Gehrig's dignity is inspiring. He is inspiring not because he overcame his condition, this was and remains impossible, but rather he adapted. Legend has it Gehrig never complained about his disability and his inability to do ordinary things like walk, tie his shoes, or climb the stairs of his home. Gehrig was not defiant as some have maintained. Instead, he gracefully accepted a grim reality, one that would quickly claim his life. But he continued to live as many people with a disability have done so before and since Gehrig's untimely death. Thus it is not one's inevitable death or disability that is the problem but society's unwillingness to accept the fact that for some disability will become a part of life. This never ceases to amaze me given the prevalence of disability, especially as we humans live longer lives. Stigma persists and clings to disability. Such stigma is like velcro, strong and unable to rip away without great effort. A point that Gehrig realized 70 years ago as is evidenced by the fact he hated overly sentimental displays of affection. You see he realized that life with or without a disability was a gift. He realized he was to use his own words was "the luckiest man on the earth".
Monday, June 29, 2009
Thursday, June 25, 2009
White House Press Release
Three days ago the White released a press release. The press release was titled "President Obama Commemorates Anniversary of Olmstead and Announces New Initiatives to Assist Americans with Disabilities". Like the good scholar that I am, I printed out the release for posterity. I then made the mistake of carefully reading what the White House had to say, got pissed off, balled up the release in my fist and threw it across the room. What did Obama say that got me so mad? The President directed Human Services Secretary Kathleen Sebelius and Housing and Urban Development Secretary Shaun Donovan to work together "to identify ways to improve access to housing, community services, and independent living". Moreover the President has decided to celebrate the anniversary of the Olmstead decision to launch "The Year of Community Living" as part of the effort to to assist Americans with disabilities.
Great. Mr. President. This is wonderful rhetoric. I am sure plenty of disability rights groups will send supportive emails and post this on their websites. Mr. President I bet you even got some wonderful photos of you and some obviously disabled person published. This may go over well with those unfamiliar with disability rights but it falls hollow with me. Political gamesmanship is all this is, a smokescreen. The reality is you have failed to support the Community Choice Act, the only real chance people with a disability have to escape the disability gulag. Here I refer to Harriet McBryde Johnson's description of the nursing home industry that has a penchant for making giant profits at the cost of human lives. The fact is as of today no real choices or at best very few exist for those that seek to live within the community instead of an institution. People with a disability are needlessly trapped in institutions that still dot the landscape of America. The best chance these people had to escape, to become empowered, was the Community Choice Act, and this is not going to be part of the health care debate. So I see the Year of Community Living as nothing more and nothing less as than rhetoric. The reality is the Community Choice Act is not important enough to rally around and push through the legislative process. This was a chance to help real people and instead the White House chose the easy way out. Mr. President you say all the right things in terms of disability but your lack of real action is deeply depressing. I voted for you because I believed you would act and instead all I hear are words.
Great. Mr. President. This is wonderful rhetoric. I am sure plenty of disability rights groups will send supportive emails and post this on their websites. Mr. President I bet you even got some wonderful photos of you and some obviously disabled person published. This may go over well with those unfamiliar with disability rights but it falls hollow with me. Political gamesmanship is all this is, a smokescreen. The reality is you have failed to support the Community Choice Act, the only real chance people with a disability have to escape the disability gulag. Here I refer to Harriet McBryde Johnson's description of the nursing home industry that has a penchant for making giant profits at the cost of human lives. The fact is as of today no real choices or at best very few exist for those that seek to live within the community instead of an institution. People with a disability are needlessly trapped in institutions that still dot the landscape of America. The best chance these people had to escape, to become empowered, was the Community Choice Act, and this is not going to be part of the health care debate. So I see the Year of Community Living as nothing more and nothing less as than rhetoric. The reality is the Community Choice Act is not important enough to rally around and push through the legislative process. This was a chance to help real people and instead the White House chose the easy way out. Mr. President you say all the right things in terms of disability but your lack of real action is deeply depressing. I voted for you because I believed you would act and instead all I hear are words.
Wednesday, June 24, 2009
The Problem with Conservative Thinking
Although I come from a very conservative family, I do not share any of my parents political viewpoints. Indeed, when it comes to politics I keep my mouth shut at all family events. I never express my political views because I know they would be upsetting if not shocking to my siblings. What separates me from my family is political and personal. None of my siblings or extended family members encounter the stigma associated with disability. As many people with a disability can tell you, especially those with an obvious physical disability, disability is the perfect cure for a big ego. Just when my ego becomes over inflated a stranger will come up to me and applaud me for being able to get in and out of the car or even more remarkable being able to read. Wow, these strangers will say, you people are amazing. Ugh, talk about one's humanity being reduced to nothing.
The only family member I shared my political views with was my father. We were an odd pair when discussing politics. He was deeply and passionately conservative. He also knew exactly how much I deeply resented people seeing my disability first and humanity second. This, I told him, made my political views change radically. He respected my views but despised my politics. I felt the same way about his political views. I respected him but could not understand why he felt a man like Reagan was great. Reagan was great at giving speeches I told my father and deflecting the real aim of his politics: make the rich richer and the poor poorer. In reply my father would laugh and ask how this differed from any other man in a position of great power. In the end I learned how to respect political conservatives through my father. Since his death and the rise of the religious right this has become increasingly difficult. Thanks in large part to the influence of George Bush our country, always a conservative place, has morphed into a country where complexity is perceived to be bad and science is somehow not to be trusted. How we got to this state of affairs is way beyond my ability to explain. But here we are, a country of extremes where we seek out evil doers, George Bush's words not mine, and conservatives talk about compassion and love. This sort of talk makes my blood boil and sends my blood pressure through the roof. Thus I have taken a few days to calm down so I can write about an essay I just read by Helen Rittelmeyer entitled "Towards a Bioethics of Love: What Conservativism Can offer Disability Activism". The essay in question appeared in Doublethink Online and was discussed beyond the usual conservative avenues--in other words I did not go out of my way to get pissed off.
I do not know anything about the author. One article by her was more than enough for me to bear and I shudder to think of what else she has written. Based on her article and its tone her expertise in disability is restricted to the fact her sister has a genetic disorder. Her sister is as a result prone to seizures, non verbal with severe to profound mental retardation. In layman's terms, Rittelmeyer writes, her sister is a "10 month old mind trapped in a 20 year old body". I know of no one that thinks this way except for a few extreme transhumanists and thoughtless people that fail to acknowledge the humanity of all humans, those with and those without a cognitive deficit. It is clear the author loves her sister very much and unlike many sees no need to search out a cure for her sister's condition. I respect these viewpoints and wish they were shared by all. But we diverge when the author mixes the love she has for her sister with disability politics. According to Rittelmeyer bioethics and questions of disability are pressing and that she can "offer a conservative bioethics, one that sees love, not autonomy, as the basis of human dignity". Such sentiments mixed with politics are in my estimation nothing short of dangerous in large part because they conspicuously ignore the fact that disability rights are identical to civil rights.
The essay by Rittelmeyer does not begin to acknowledge must less accept a disability rights point of view. Disability is inherently bad, people with a disability needlessly suffer, are assumed to be in pain, physical and psychic, encounter endless adversity, and a diminished life. Moreover, disability is the defining aspect of an individual's life. There is no escape from disability. She writes "We cannot reduce a man to his disability, but neither can we look past it. Look past it to what? An imaginary person minus that disability?" Wow, no wonder disability rights remains grossly misunderstood by most people I encounter. At issue for the Rittelmeyer is dignity, human dignity, but what sort of dignity? Clearly, she and sadly many others cannot look past a wheelchair and see the human sitting in it for instance. This is the case despite the fact a disability such as quadriplegia is "less fundamental". What it is less fundamental from is not clear--perhaps her sister's condition? So what are people with a disability to do? In Rittelmeyer's opinion embrace conservative bioethics that require "the disabled and their families to show real heroism by accepting their suffering with some measure of grace and by swallowing their pride and accepting an unusual measure of dependence". Thus she goes on to note that "those who have had hardship thrust upon them have found some nobility in it"
Wow, civil rights and disability rights have been perverted in the name of love and conservative bioethics. The last thirty years of legislative initiatives, the independent living movement, and decades of activism have been replaced with an expectation that we people with disabilities need to "swallow our pride" and be "heroes". I see nothing heroic in having my civil rights stomped on. I see not reason to "swallow my pride" when treated like I am anything less than fully human. This is outrageous until I realized that some how "reasonable accommodations" have been transformed into charity and choice. The good person with a disability, the one with honor, accepts their stature in life: dependent, in need of hand out and happy for any societal largesse. The bad disabled person is one who demands equality: the right to get on and off a bus or airplane. Worse yet, expects to be able to vote, get into governmental offices and actually enjoy the fundamental rights all Americans take for granted. What Rittelmeyer wants is a return to an old era when people with a disability were trotted out a few times a year--Memorial Day, Veteran's Day, Mother's Day, etc.
Most troubling to me about Rittelmeyer's views is that she is familiar with disability issues. For instance, she raises a good point that some disability activists insist that disability is solely a social problem. That is disability activists are too closely tied to a rigid social model of disability. This point has been made by many within and outside the disability rights community. It is an issue, one that has not as yet been resolved. But this does not mean the social model of disability can be ignored just as the medical model cannot be dismissed. This nuanced point however is not going to be picked up on by the vast majority of her conservative readers who will think: "finally a person that makes sense and by extension gives us the power to turn down all those expensive things disabled people want like special education and elevators in school". The bottom line is that a bioethics of love or conservative view of disability is a giant step backward, pun intended. Disabled people have rights and when they assert them are disliked. Rittelmeyer wants to undermine hard won civil rights earned by people with a disability that are largely ignored and replace them with an expectation that we should "swallow our pride" and accept social dependency. I think not. In fact I can think of much more colorful language to express myself that would fit quit well within a locker room. But that is exactly what Rittelmeyer wants and I refuse to accept the bait and act the part of the uppity cripple. You see I have dignity. I have civil rights. Ain't America great that someone like me that has not walked in thirty years can wield a pen. I am feeling the power today.
The only family member I shared my political views with was my father. We were an odd pair when discussing politics. He was deeply and passionately conservative. He also knew exactly how much I deeply resented people seeing my disability first and humanity second. This, I told him, made my political views change radically. He respected my views but despised my politics. I felt the same way about his political views. I respected him but could not understand why he felt a man like Reagan was great. Reagan was great at giving speeches I told my father and deflecting the real aim of his politics: make the rich richer and the poor poorer. In reply my father would laugh and ask how this differed from any other man in a position of great power. In the end I learned how to respect political conservatives through my father. Since his death and the rise of the religious right this has become increasingly difficult. Thanks in large part to the influence of George Bush our country, always a conservative place, has morphed into a country where complexity is perceived to be bad and science is somehow not to be trusted. How we got to this state of affairs is way beyond my ability to explain. But here we are, a country of extremes where we seek out evil doers, George Bush's words not mine, and conservatives talk about compassion and love. This sort of talk makes my blood boil and sends my blood pressure through the roof. Thus I have taken a few days to calm down so I can write about an essay I just read by Helen Rittelmeyer entitled "Towards a Bioethics of Love: What Conservativism Can offer Disability Activism". The essay in question appeared in Doublethink Online and was discussed beyond the usual conservative avenues--in other words I did not go out of my way to get pissed off.
I do not know anything about the author. One article by her was more than enough for me to bear and I shudder to think of what else she has written. Based on her article and its tone her expertise in disability is restricted to the fact her sister has a genetic disorder. Her sister is as a result prone to seizures, non verbal with severe to profound mental retardation. In layman's terms, Rittelmeyer writes, her sister is a "10 month old mind trapped in a 20 year old body". I know of no one that thinks this way except for a few extreme transhumanists and thoughtless people that fail to acknowledge the humanity of all humans, those with and those without a cognitive deficit. It is clear the author loves her sister very much and unlike many sees no need to search out a cure for her sister's condition. I respect these viewpoints and wish they were shared by all. But we diverge when the author mixes the love she has for her sister with disability politics. According to Rittelmeyer bioethics and questions of disability are pressing and that she can "offer a conservative bioethics, one that sees love, not autonomy, as the basis of human dignity". Such sentiments mixed with politics are in my estimation nothing short of dangerous in large part because they conspicuously ignore the fact that disability rights are identical to civil rights.
The essay by Rittelmeyer does not begin to acknowledge must less accept a disability rights point of view. Disability is inherently bad, people with a disability needlessly suffer, are assumed to be in pain, physical and psychic, encounter endless adversity, and a diminished life. Moreover, disability is the defining aspect of an individual's life. There is no escape from disability. She writes "We cannot reduce a man to his disability, but neither can we look past it. Look past it to what? An imaginary person minus that disability?" Wow, no wonder disability rights remains grossly misunderstood by most people I encounter. At issue for the Rittelmeyer is dignity, human dignity, but what sort of dignity? Clearly, she and sadly many others cannot look past a wheelchair and see the human sitting in it for instance. This is the case despite the fact a disability such as quadriplegia is "less fundamental". What it is less fundamental from is not clear--perhaps her sister's condition? So what are people with a disability to do? In Rittelmeyer's opinion embrace conservative bioethics that require "the disabled and their families to show real heroism by accepting their suffering with some measure of grace and by swallowing their pride and accepting an unusual measure of dependence". Thus she goes on to note that "those who have had hardship thrust upon them have found some nobility in it"
Wow, civil rights and disability rights have been perverted in the name of love and conservative bioethics. The last thirty years of legislative initiatives, the independent living movement, and decades of activism have been replaced with an expectation that we people with disabilities need to "swallow our pride" and be "heroes". I see nothing heroic in having my civil rights stomped on. I see not reason to "swallow my pride" when treated like I am anything less than fully human. This is outrageous until I realized that some how "reasonable accommodations" have been transformed into charity and choice. The good person with a disability, the one with honor, accepts their stature in life: dependent, in need of hand out and happy for any societal largesse. The bad disabled person is one who demands equality: the right to get on and off a bus or airplane. Worse yet, expects to be able to vote, get into governmental offices and actually enjoy the fundamental rights all Americans take for granted. What Rittelmeyer wants is a return to an old era when people with a disability were trotted out a few times a year--Memorial Day, Veteran's Day, Mother's Day, etc.
Most troubling to me about Rittelmeyer's views is that she is familiar with disability issues. For instance, she raises a good point that some disability activists insist that disability is solely a social problem. That is disability activists are too closely tied to a rigid social model of disability. This point has been made by many within and outside the disability rights community. It is an issue, one that has not as yet been resolved. But this does not mean the social model of disability can be ignored just as the medical model cannot be dismissed. This nuanced point however is not going to be picked up on by the vast majority of her conservative readers who will think: "finally a person that makes sense and by extension gives us the power to turn down all those expensive things disabled people want like special education and elevators in school". The bottom line is that a bioethics of love or conservative view of disability is a giant step backward, pun intended. Disabled people have rights and when they assert them are disliked. Rittelmeyer wants to undermine hard won civil rights earned by people with a disability that are largely ignored and replace them with an expectation that we should "swallow our pride" and accept social dependency. I think not. In fact I can think of much more colorful language to express myself that would fit quit well within a locker room. But that is exactly what Rittelmeyer wants and I refuse to accept the bait and act the part of the uppity cripple. You see I have dignity. I have civil rights. Ain't America great that someone like me that has not walked in thirty years can wield a pen. I am feeling the power today.
Friday, June 19, 2009
Remember Wendy Portillio?
Almost a year ago a teacher from Port St. Lucie Florida was thrust into the national spot light. Some may recall Wendy Portillo permitted or perhaps encouraged her kindergarten class to vote on whether Alex Barton could remain in Kindergarten. Alex Barton was predictably voted out of Kindergarten, humiliated by his peers and teacher, and forced to withdraw from school. The uproar that followed was nothing short of a type of hysteria and I vowed not to write a single word despite the fact I was as outraged as many others. The ugly incident reminded me of many horrible school incidents I experienced as a child with profound neurological deficits. At the time I thought no competent teacher could be that insensitive to a child. Whether the child in question had a disability or not seemed to lack relevance. No teacher should knowingly humiliate a child. If such an event took place the teacher should be fired and never permitted back in a classroom. Once the media spot light died down I thought the truth about what took place in Port St. Lucie would eventually emerge. The news coming out of Florida in recent days is not positive in my estimation.
The Port St. Lucie School District has quietly reinstated Ms. Portillo with full tenure. The vote to reinstate her by the School Board was unanimous and did not merit a word on the national news or a single newspaper outside of Florida. I am sure Ms. Portillo has a had a hard time but I have grave reservations about her judgement and teaching skills. Whether she ever sets foot in a classroom again has not been decided. Her unpaid suspension ends in five months. Based on news reports, the effort to reinstate Ms. Portillo was strong--parents and teachers alike wanted her back. Fine, but what I want to know is why Melissa Barton, Alex's mother, was not asked to comment at the Board of Education meeting when Ms. Portillo was reinstated. Surely the mother of the child that was humiliated should have at least been present if not asked to give her opinion before Ms. Portillo was reinstated. I have no idea if Ms. Portillo is a competent teacher or not. However, I do have serious reservations about any adult that would ask young children to vote on whether a child should be permitted in class. I am also disheartened to read that in the estimation of some the disability blogging community is largely responsible for the emotional firestorm that ensued and needlessly "crucified" a teacher. From a distance, it seems to me that the Port St. Lucie School School District has played a cool game of politics. They reinstated a teacher they wanted to keep regardless of the fact she humiliated a child. The larger significance of the school board's action is important. It sends a clear message to all those that do not fit in, disabled and not disabled, that difference will not be tolerated. We may acquiesce to pressure but in the end we will get exactly what we want. What do schools want? Compliant children that do not question authority. Children that will do exactly what they are told and take innumerable standardized exams and not ask why they are doing so. Education is secondary to the control of young minds that are being wasted across our nation. Secondary education is in deep trouble and I for one am concerned about the future as we are raising a generation of young people that do not know how to think and act independently.
The Port St. Lucie School District has quietly reinstated Ms. Portillo with full tenure. The vote to reinstate her by the School Board was unanimous and did not merit a word on the national news or a single newspaper outside of Florida. I am sure Ms. Portillo has a had a hard time but I have grave reservations about her judgement and teaching skills. Whether she ever sets foot in a classroom again has not been decided. Her unpaid suspension ends in five months. Based on news reports, the effort to reinstate Ms. Portillo was strong--parents and teachers alike wanted her back. Fine, but what I want to know is why Melissa Barton, Alex's mother, was not asked to comment at the Board of Education meeting when Ms. Portillo was reinstated. Surely the mother of the child that was humiliated should have at least been present if not asked to give her opinion before Ms. Portillo was reinstated. I have no idea if Ms. Portillo is a competent teacher or not. However, I do have serious reservations about any adult that would ask young children to vote on whether a child should be permitted in class. I am also disheartened to read that in the estimation of some the disability blogging community is largely responsible for the emotional firestorm that ensued and needlessly "crucified" a teacher. From a distance, it seems to me that the Port St. Lucie School School District has played a cool game of politics. They reinstated a teacher they wanted to keep regardless of the fact she humiliated a child. The larger significance of the school board's action is important. It sends a clear message to all those that do not fit in, disabled and not disabled, that difference will not be tolerated. We may acquiesce to pressure but in the end we will get exactly what we want. What do schools want? Compliant children that do not question authority. Children that will do exactly what they are told and take innumerable standardized exams and not ask why they are doing so. Education is secondary to the control of young minds that are being wasted across our nation. Secondary education is in deep trouble and I for one am concerned about the future as we are raising a generation of young people that do not know how to think and act independently.
Thursday, June 18, 2009
Scary Thoughts: How Many with SCI Needlessly Die
Yesterday I described myself as "an old time crip". It never ceases to amaze me how things have changed since i was first paralyzed. My first wheelchair was a piece of crap manufactured by Everest and Jennings. It weighed 50 pounds, was poorly made, and came in one color and fell apart in 6 months. What did I do to this wheelchair? I went up and down curbs, played basketball, and led an active life. For this, the "lifetime" warranty was voided and in the next two years went through at least four other wheelchairs until I found one of the first rigid frame wheelchairs ever made. I happily parted ways with E&J and did a little dance years later when they went out of business.
Technology has changed dramatically. People with SCI can expect to live a rich and full life post injury. This should not be subject to question. However, I have no doubt questions about the quality of life post SCI is still subject to intense discussion. I am sure people with high level SCI injuries are given a crystal clear image of life post injury that is far from positive. The focus is on respirators, a total lack of independence, pressure sores, nursing home care, chronic infection and worse. No doubt some people will hear all this and read between the lines: life with a high level SCI injury is not worth living. The message can be delivered subtly or bluntly. We can make your loved one comfortable and they will expire from secondary complications associated with their injury. Does this take place today? You're damn right it does. I saw this 30 years ago and sadly we have not progressed that much socially. I vividly recall late one night asking a rehab nurse why there were no people with a high level SCIs on the ward. She looked at me with an odd expression and replied "think about it". Naive, I thought and thought and could not think of an answer that made sense. The nurse shook her head and told me to raise my level of injury from T-3 to C-3 and asked me if I really wanted to live that sort of life. After a pause I said not but that was not up to me, people had the right to choose. Such a decision I thought was made by doctor, patient, and family. Again she shook her head. That decision, she told me, was made in the ER and operating rooms by doctors. Patients who would be dependent upon a respirator and unable to independently move died. "They were allowed to die with dignity" she told me. I lost a lot of sleep that night wondering about the so called "quality of my life", what doctors and other medical professionals thought of my existence and shuddered to think of the many who would die not of a high level SCI but a social assumption that their life was not worth living.
These thoughts flooded back to me yesterday when I read "How I Didn't Die" by Terrie Lincoln, Systems Advocate, at the Center for Disability Rights and cross posted at Not Dead Yet. Apparently the Center for Disability Rights and Not Dead Yet share some office space in the same building. Stephen Drake, one of my favorite people in the fight for disability rights, had been contacted by someone from "How We Die, a website and TV series devoted to "end of life decisions". Drake was able to convince the people at this show to include the stories of people who were supposed to die--indeed were pushed to die by doctors. Ms. Lincoln's story is among the first to be discussed. I encourage you to all read her story. It did not happen thirty years ago but a mere twelve. Twelve years ago! Twelve years ago a person with a SCI was pushed to die! When I read her story all I could think of was the disparity between her life and mine. I was the father of a 5 year old boy living the good life in suburbia. Ms. Lincoln was being pressured by doctors to die, that her life was not worth living. What Ms. Lincoln and I shared was a supportive family. Her mother refused to listen to doctors and fought back. Likewise, my parents never questioned my ability. I was going to live a rich and full life like my siblings. I may be paralyzed but the most important part of my body, my brain, worked perfectly and it was up to me to use it. My parents did not give a damn whether I was paralyzed or not. They loved me for who I was.
Ms. Lincoln's story deeply depressed me. Surely we have come far technologically but the social lag, the stigma attached to life after SCI has not abated. It should not be up to a strong and supportive family to encourage a person with a SCI to continue to live. This should be a given no matter the level of injury. But this sort of thinking was naive thirty years ago and as Ms. Lincoln demonstrated was equally naive twelve years ago. I suspect it is naive thinking today. And it makes me wonder just how many people today will die of complications associated with SCI that need not die. How many doctors exist that are wiling to make this decision for a patient? How many people have died over the years? I suspect the numbers are staggering. These sorts of thought kept me awake thirty years and I wonder if the problem, needless deaths--is worse not better. How many people die today as a result of a value judgment made by doctors? I think of Daniel James and his "loving" parents that received a tidal wave of support when they escorted him to Dignitas shortly after his SCI where he died, a result of assisted suicide. More generally, I wonder about the elderly and all those that have had extended hospitalizations and are given a choice between assisted suicide and continued care? Are people such as this, surely depressed, given a real choice? What about the elderly who are visited by well funded right to die groups? Are these people really being a given choice or being told to die? I do not have answers to the questions I pose but I am convinced of one thing: good people, young and old alike, die needlessly everyday. These needless deaths have less to with medicine than the value judgments made by those that work in a supposedly hard science we call medicine.
Technology has changed dramatically. People with SCI can expect to live a rich and full life post injury. This should not be subject to question. However, I have no doubt questions about the quality of life post SCI is still subject to intense discussion. I am sure people with high level SCI injuries are given a crystal clear image of life post injury that is far from positive. The focus is on respirators, a total lack of independence, pressure sores, nursing home care, chronic infection and worse. No doubt some people will hear all this and read between the lines: life with a high level SCI injury is not worth living. The message can be delivered subtly or bluntly. We can make your loved one comfortable and they will expire from secondary complications associated with their injury. Does this take place today? You're damn right it does. I saw this 30 years ago and sadly we have not progressed that much socially. I vividly recall late one night asking a rehab nurse why there were no people with a high level SCIs on the ward. She looked at me with an odd expression and replied "think about it". Naive, I thought and thought and could not think of an answer that made sense. The nurse shook her head and told me to raise my level of injury from T-3 to C-3 and asked me if I really wanted to live that sort of life. After a pause I said not but that was not up to me, people had the right to choose. Such a decision I thought was made by doctor, patient, and family. Again she shook her head. That decision, she told me, was made in the ER and operating rooms by doctors. Patients who would be dependent upon a respirator and unable to independently move died. "They were allowed to die with dignity" she told me. I lost a lot of sleep that night wondering about the so called "quality of my life", what doctors and other medical professionals thought of my existence and shuddered to think of the many who would die not of a high level SCI but a social assumption that their life was not worth living.
These thoughts flooded back to me yesterday when I read "How I Didn't Die" by Terrie Lincoln, Systems Advocate, at the Center for Disability Rights and cross posted at Not Dead Yet. Apparently the Center for Disability Rights and Not Dead Yet share some office space in the same building. Stephen Drake, one of my favorite people in the fight for disability rights, had been contacted by someone from "How We Die, a website and TV series devoted to "end of life decisions". Drake was able to convince the people at this show to include the stories of people who were supposed to die--indeed were pushed to die by doctors. Ms. Lincoln's story is among the first to be discussed. I encourage you to all read her story. It did not happen thirty years ago but a mere twelve. Twelve years ago! Twelve years ago a person with a SCI was pushed to die! When I read her story all I could think of was the disparity between her life and mine. I was the father of a 5 year old boy living the good life in suburbia. Ms. Lincoln was being pressured by doctors to die, that her life was not worth living. What Ms. Lincoln and I shared was a supportive family. Her mother refused to listen to doctors and fought back. Likewise, my parents never questioned my ability. I was going to live a rich and full life like my siblings. I may be paralyzed but the most important part of my body, my brain, worked perfectly and it was up to me to use it. My parents did not give a damn whether I was paralyzed or not. They loved me for who I was.
Ms. Lincoln's story deeply depressed me. Surely we have come far technologically but the social lag, the stigma attached to life after SCI has not abated. It should not be up to a strong and supportive family to encourage a person with a SCI to continue to live. This should be a given no matter the level of injury. But this sort of thinking was naive thirty years ago and as Ms. Lincoln demonstrated was equally naive twelve years ago. I suspect it is naive thinking today. And it makes me wonder just how many people today will die of complications associated with SCI that need not die. How many doctors exist that are wiling to make this decision for a patient? How many people have died over the years? I suspect the numbers are staggering. These sorts of thought kept me awake thirty years and I wonder if the problem, needless deaths--is worse not better. How many people die today as a result of a value judgment made by doctors? I think of Daniel James and his "loving" parents that received a tidal wave of support when they escorted him to Dignitas shortly after his SCI where he died, a result of assisted suicide. More generally, I wonder about the elderly and all those that have had extended hospitalizations and are given a choice between assisted suicide and continued care? Are people such as this, surely depressed, given a real choice? What about the elderly who are visited by well funded right to die groups? Are these people really being a given choice or being told to die? I do not have answers to the questions I pose but I am convinced of one thing: good people, young and old alike, die needlessly everyday. These needless deaths have less to with medicine than the value judgments made by those that work in a supposedly hard science we call medicine.
Wednesday, June 17, 2009
Punk Rock and Disability History
I do not like Punk music. However, I do understand why Punk musically and culturally is important. Originally a musically based movement, punk transformed into an important oppositional subculture. I knew this instinctively when I heard the Sex Pistols for the first time as a college student. What attracted me to Punk had less to do with the music produced than the anti-corporate and in your face anti establishment beliefs. The sort of anarchistic nihilism the punks fostered suited my mood circa 1978. I was newly disabled, hopelessly confused as to the meaning of disability and desperate to have sex ( I was 18 years old afterall). I did not understand the moral condemnation that punks were subjected to. I could not fathom how the Sex Pistols became demonized or to borrow the words of Dick Hebdige emerged as "folk devils". What I directly related to was the punk motto "no future". This is exactly what I was thinking and worrying about: did I have a future as a crippled man? What did I do while I contemplated my fate? I sat in my room, smoked too much pot and listened to the punk "national anthem" God Save the Queen again and again and again. I listened to Johnny Rotten of the Sex Pistols Scream:
God Save the Queen, the fascist regime
They made you a moron, a potential H-bomb
God Save the Queen, she ain't no human being
There is no future in England's dream
No future, no future, no future for you
Did I relate God Save the Queen to the dismal social situation in England? At an abstract level I suppose I did but what I really thought about was my growing disdain for the cultural construction of disability. I despised the people that smiled at me but considered ramps, elevators to be a waste of money and my life a tragedy. I despised the lack of value placed on my existence and grew increasingly angry. I dealt with this the only way I knew how: I retreated into a a social shell and was determined to excel the only way I knew how: I would get outstanding grades and whenever possible get as drunk or stoned as possible. This worked quite well circa 1980. I was in the perfect social environment, college, and had few responsibilities aside from school. My interest in punk never subsided even though God Save the Queen and the Sex Pistols were surpassed by many other punk bands. God Save the Queen as my favorite song was replaced by Ian Drury's single "Sex,& Drugs & Rock & Roll", and in 1981 by Spasticus Autisticus. Written by Drury and Chaz Jankel, it was released as a single and on the album Lord Upminister I instantly loved the fact the song the BBC deemed the song offensive and upset the delicate sensibilities of the British. The song also reminded me of the classic book and film Spartacus by Howard Fast. I vividly recalled watching this film with my brother and was drawn to the manly and defiant Kirk Douglas who starred as Spartacus. The song inspired me to read Fast's classic again and I was surprised at how little I knew about the text and its author despite the fact I loved the book. Sure I recalled the main character was born a slave, trained as a gladiator, led a slave revolt that was eventually crushed by Crassus. What I did not know was that Fast was among those black listed during the Cold War and that Spartacus was instrumental in turing the tide against McCarthyism that reigned supreme in Hollywood.
What you may be wondering does Spasticus Autisticus have do with the Howard Fast? The song was written to mark the International Year of the Disabled Persons in 1981. The song was banned by the BBC and the lyrics marked a transition in my life. I was done getting drunk and stoned as it became boring. I was also done being a wall flower content to get good grades but little else. At some level I was making the transition from confused and compliant to one that would eventually become defiant and a self described Bad Cripple. Spasticus Autisticus helped me make this change. The lyrics some 30 years later are worth reading anew:
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I wiggle when I piddle
'Cos my middle is a riddle
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I dribble when I nibble
And I quibble when I scribble
Hello to you out there in Normal Land
You may not comprehend my tale or understand
As I crawl past your window give me lucky looks
You can read my body but you'll never read my books
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm knobbled on the cobbles
'Cos I hobble when I wobble
Swim!
So place your hard-earned peanuts in my tin
And thank the Creator you're not in the state I'm in
So long have I been languished on the shelf
I must give all proceedings to myself
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
54 appliances in leather and elastic
100,000 thank you's from 27 ... spastics
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Widdling, griddling, skittling, diddling, fiddling, diddling, widdling, diddling, spasticus
I'm spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
Spasticus!
The refrain, "I'm Spasticus, autisticus" reminded me of Kirk Douglas at the end of Spartacus when he and his fellow slaves are hung and all reply defiantly "I am Spartacus". So began my journey of rebellion in college, one that has not as yet ended. But I hope someday it will as I am getting too old and cranky to fight. Thus I am increasingly interested and drawn to the work of the next generation of disability rights activists. They are small in number but strong in spirit and have embraced the internet with gusto. Thankfully, they start from a position of legal equality that has not yet been matched by social equality--not by a long shot in fact. But I hope like me they are full of piss and vinegar. For I am willing accept my roll as "an old time crip" and am happy provide a history lesson every once in a while.
God Save the Queen, the fascist regime
They made you a moron, a potential H-bomb
God Save the Queen, she ain't no human being
There is no future in England's dream
No future, no future, no future for you
Did I relate God Save the Queen to the dismal social situation in England? At an abstract level I suppose I did but what I really thought about was my growing disdain for the cultural construction of disability. I despised the people that smiled at me but considered ramps, elevators to be a waste of money and my life a tragedy. I despised the lack of value placed on my existence and grew increasingly angry. I dealt with this the only way I knew how: I retreated into a a social shell and was determined to excel the only way I knew how: I would get outstanding grades and whenever possible get as drunk or stoned as possible. This worked quite well circa 1980. I was in the perfect social environment, college, and had few responsibilities aside from school. My interest in punk never subsided even though God Save the Queen and the Sex Pistols were surpassed by many other punk bands. God Save the Queen as my favorite song was replaced by Ian Drury's single "Sex,& Drugs & Rock & Roll", and in 1981 by Spasticus Autisticus. Written by Drury and Chaz Jankel, it was released as a single and on the album Lord Upminister I instantly loved the fact the song the BBC deemed the song offensive and upset the delicate sensibilities of the British. The song also reminded me of the classic book and film Spartacus by Howard Fast. I vividly recalled watching this film with my brother and was drawn to the manly and defiant Kirk Douglas who starred as Spartacus. The song inspired me to read Fast's classic again and I was surprised at how little I knew about the text and its author despite the fact I loved the book. Sure I recalled the main character was born a slave, trained as a gladiator, led a slave revolt that was eventually crushed by Crassus. What I did not know was that Fast was among those black listed during the Cold War and that Spartacus was instrumental in turing the tide against McCarthyism that reigned supreme in Hollywood.
What you may be wondering does Spasticus Autisticus have do with the Howard Fast? The song was written to mark the International Year of the Disabled Persons in 1981. The song was banned by the BBC and the lyrics marked a transition in my life. I was done getting drunk and stoned as it became boring. I was also done being a wall flower content to get good grades but little else. At some level I was making the transition from confused and compliant to one that would eventually become defiant and a self described Bad Cripple. Spasticus Autisticus helped me make this change. The lyrics some 30 years later are worth reading anew:
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I wiggle when I piddle
'Cos my middle is a riddle
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I dribble when I nibble
And I quibble when I scribble
Hello to you out there in Normal Land
You may not comprehend my tale or understand
As I crawl past your window give me lucky looks
You can read my body but you'll never read my books
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm knobbled on the cobbles
'Cos I hobble when I wobble
Swim!
So place your hard-earned peanuts in my tin
And thank the Creator you're not in the state I'm in
So long have I been languished on the shelf
I must give all proceedings to myself
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
I'm spasticus, I'm spasticus
I'm spasticus autisticus
54 appliances in leather and elastic
100,000 thank you's from 27 ... spastics
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Widdling, griddling, skittling, diddling, fiddling, diddling, widdling, diddling, spasticus
I'm spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
Spasticus, spasticus
Spasticus autisticus
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
I'm spasticus!
Spasticus!
The refrain, "I'm Spasticus, autisticus" reminded me of Kirk Douglas at the end of Spartacus when he and his fellow slaves are hung and all reply defiantly "I am Spartacus". So began my journey of rebellion in college, one that has not as yet ended. But I hope someday it will as I am getting too old and cranky to fight. Thus I am increasingly interested and drawn to the work of the next generation of disability rights activists. They are small in number but strong in spirit and have embraced the internet with gusto. Thankfully, they start from a position of legal equality that has not yet been matched by social equality--not by a long shot in fact. But I hope like me they are full of piss and vinegar. For I am willing accept my roll as "an old time crip" and am happy provide a history lesson every once in a while.
Tuesday, June 16, 2009
White Castle Misses the Point
A news report coming out of Minneapolis St. Paul caught my eye this morning as I ate my usual boring but healthy breakfast. On the surface, the report is a supposedly supportive story about a woman that was turned away from White Castle. The woman in question, Ariel Wade, was not turned away from the front door or refused service inside the well-known hamburger chain. Ariel Wade was refused service when she appeared in her electric mobility scooter at the drive through window. Not surprisingly, she was turned away because it is well established policy that drive through windows are for licensed motor vehicles only.
What the story in the Minneapolis St. Paul Tribune by James Eli Shiffer is about has nothing to do with disability rights. The subtext, what is not stated, is obvious: ain't it a hoot to think about some lady in an electric scooter trying to get White Castle hamburgers past midnight and within sight of the State Capital. Better yet, Ariel Wade is "madder than fish grease" that White Castle staff refused to fork over burgers to her in the drive through. Ariel Wade refused to be bought off with free meal vouchers despite the fact she is a former exotic dancer and until recently worked selling bingo tickets at a bar. Ariel Wade claims the fact she was refused service is evidence that the White Castle policy discriminates against disabled people that cannot drive. Based on some 249 replies to this story the general public thinks Ariel Wade is nuts, one of those crazy and unreasonable people that abound when it comes to those pesky cripple people and their "civil rights". One outraged person wrote if Ariel Wade wanted a hamburger so badly she should have called a taxi and gone to the drive through. Many people cited safety issues and wondered what the story had to do with disability rights.
Given the way the story is framed, I too was initially puzzled. Ariel Wade is no saint nor is she a whistle blower. In fact, it would not surprise me if Ariel Wade had a lot to drink the night she showed up at the White Castle. I state this not to slander Ms. Wade but acknowledge the few times in my life I have sought out post midnight burgers had less to do with hunger than the amount of beer I had ben drinking and my impaired judgement. So, buried deep within the story is the real issue. The White Castle "dining room" closed at 11PM but the drive through remained open 24 hours. The only access to White Castle burgers is via the drive through. Thus the argument could be made under the ADA that if a store is open 24 hours it must be made accessible during that 24 hour period. This is an interesting but unexplored aspect of the ADA. It also has wide ranging implications: any store can be open 24 hours a day but what if only limited access was made available to people with a disability? To me, this is a clear violation of the ADA. I have encountered a similar problem in the past--not at stores but at libraries. During exam periods the library had extended hours and in many cases the only accessible entrance was closed. Security was supposed to have a key but that damn key was elusive or its existence a total mystery. The point is Ariel Wade has raised an interesting legal question pertaining to the ADA. Sadly it is framed in way that is designed to prompt outrage, a gut reaction, and no thought. A passing glance of this story reinforces the antiquated notion that people with a disability are unreasonable and narcisstic. The reality as I know it is quite different and yet another opportunity to discuss the civil rights of people with a disability has been hopelessly skewed.
What the story in the Minneapolis St. Paul Tribune by James Eli Shiffer is about has nothing to do with disability rights. The subtext, what is not stated, is obvious: ain't it a hoot to think about some lady in an electric scooter trying to get White Castle hamburgers past midnight and within sight of the State Capital. Better yet, Ariel Wade is "madder than fish grease" that White Castle staff refused to fork over burgers to her in the drive through. Ariel Wade refused to be bought off with free meal vouchers despite the fact she is a former exotic dancer and until recently worked selling bingo tickets at a bar. Ariel Wade claims the fact she was refused service is evidence that the White Castle policy discriminates against disabled people that cannot drive. Based on some 249 replies to this story the general public thinks Ariel Wade is nuts, one of those crazy and unreasonable people that abound when it comes to those pesky cripple people and their "civil rights". One outraged person wrote if Ariel Wade wanted a hamburger so badly she should have called a taxi and gone to the drive through. Many people cited safety issues and wondered what the story had to do with disability rights.
Given the way the story is framed, I too was initially puzzled. Ariel Wade is no saint nor is she a whistle blower. In fact, it would not surprise me if Ariel Wade had a lot to drink the night she showed up at the White Castle. I state this not to slander Ms. Wade but acknowledge the few times in my life I have sought out post midnight burgers had less to do with hunger than the amount of beer I had ben drinking and my impaired judgement. So, buried deep within the story is the real issue. The White Castle "dining room" closed at 11PM but the drive through remained open 24 hours. The only access to White Castle burgers is via the drive through. Thus the argument could be made under the ADA that if a store is open 24 hours it must be made accessible during that 24 hour period. This is an interesting but unexplored aspect of the ADA. It also has wide ranging implications: any store can be open 24 hours a day but what if only limited access was made available to people with a disability? To me, this is a clear violation of the ADA. I have encountered a similar problem in the past--not at stores but at libraries. During exam periods the library had extended hours and in many cases the only accessible entrance was closed. Security was supposed to have a key but that damn key was elusive or its existence a total mystery. The point is Ariel Wade has raised an interesting legal question pertaining to the ADA. Sadly it is framed in way that is designed to prompt outrage, a gut reaction, and no thought. A passing glance of this story reinforces the antiquated notion that people with a disability are unreasonable and narcisstic. The reality as I know it is quite different and yet another opportunity to discuss the civil rights of people with a disability has been hopelessly skewed.
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