The title of this blog entry is a direct quote from Josie Byzek, writer for New Mobility. This is what Ms. Byzek thought after watching the 22 minute clip from CSPAN when Obama spoke about the 19th Anniversary of the ADA. Sadly I think Ms. Byzek is correct. Obama's speech was a bitter disappointment. This speech was never going to make the national news and was uttered at the end of what USA Today characterized as a "tough day" for the president. Regardless, I expected Obama to realize who he was speaking to--the men and women that crafted the ADA and contemporary disability rights activists--and express a deep understanding of this legislation and its checkered history. What Obama delivered was boiler plate, utter and total crap that would go over great with people that knew nothing about disability. However, Obama's audience knew all about disability, a fact he was aware of as he pointed out the presence of Tammy Duckworth, David Paterson and other prominent people with a disability. How these people reacted to Obama's speech I do not know. I sure wish I was present. But like Byzek, I am angry and cannot help but conclude we are indeed screwed.
People with a disability are screwed because Obama relied on antiquated stereotypes and penchant to use his father-in-law as proof he knows all about disability. If Obama had any real insight, he would not portray his father-in-law as a super cripple, a dehumanizing characterization I reject as do others with a modicum of common sense. Worse yet, most of the speech was devoted to a time "long ago" when discrimination was rampant. "Long ago" was pre 1990 when the ADA was signed and the problem of disability rights was taken care of. Gee, this is news me as I have not nor have I ever felt equal to my peers that are bipedal. In fact I feel decidedly repressed every time I leave my home and try to find something as exotic as an accessible bathroom where I can take a piss.
Obama did not mention the ADA Restoration Act. I guess this would have been hard to explain and is further evidence he misjudged his audience. One aspect of his speech was clearly not well received. He spoke about stem cell research, signing the Reeve Act and health care. Laudable goals but anyone with a modicum of knowledge should know better than to bring up Reeve among a group of disability rights activists. Reeve is despised by many disability rights activists and in my estimation set back disability rights by a decade or more. Reeve message was simple, he wanted to be cured. Good for him but this desire ignored the hard battles won by disability rights activists and belittled those that had no interest in cure and instead sought to live their life free of bigotry and ignorance.
Perhaps I am being too critical of Obama. When trying to get elected he said and did all the right things as they pertained to disability. Since elected, another man has emerged, one I am learning how to dislike. What did I get out of Obama's speech?Obama wants to cure crippled people, hence he talks about Reeve and better medical care. At no point is any mention made that most people with a disability are uninsured and cannot afford health care. When obstacles are encountered in the post ADA land of nirvana the super cripple will overcome and persevere. How does he know this? Obama's father-in-law woke up early and made sure he had time to button his shirt and still get to work on time. He even struggled to walk up the steps of his home with two canes. Some how I think this was the least of his problems. Obama's words were not inspiring stuff but damaging stereotype. As Obama spoke I wondered what happened to his support for the Community Choice Act? This surely would have helped his father-in-law. No mention of this legislation was made, legislation he now supports in theory but it is off the table when talking about health care reform. Obama did not say a word, not one, about the current rate of unemployment among people with a disability. When the ADA was passed 19 years ago the unemployment rate was 70%, today it is 66% Surely we can do better in almost two decades.
Since Sunday I have been very cranky. I miss my son who is in China as part of the People to People program. It is getting hot (I detest the heat) and cannot afford to replace my central air conditioner that broke at the end of last summer. I am angry about the lack of interest in the anniversary of the ADA. Sorry, but 22 minutes on CSPAN does not constitute a major investment of the President's time. I am worried Obama is listening and enamored with people like Peter Singer who want to get the maximum "bang for their buck" when it comes to health care reform. Having a disability is not cheap and this cannot help but have a negative impact on the lives of people such as myself and others who may be perceived as an expensive burden not worth investing in. Most of all I am angry almost 20 years after the ADA was passed I still cannot leave my home without thinking about whether I can get into a bathroom, find a spot to park my car, navigate the aisle of the supermarket or a restaurant, encounter someone that thinks "its so good to see you out", or others who assume I have nothing better to do than answer silly questions about my disability because they are curious. This was what the ADA was supposed to ameliorate. It is why I am angry, hot, and unhappy. Today is a day I do not respect my fellow humans.
Tuesday, July 28, 2009
Sunday, July 26, 2009
Happy Anniversary: Who Cares?
Today is the 19th anniversary of the Americans with Disability Act. Unlike previous years when I had friends over to my home to celebrate the day I began to share the same civil rights as other Americans, today I have no such plans. I don't feel like celebrating in part because the ADA is the only civil rights legislation that has utterly failed to resonate with the general public. You average American does not care about the ADA and if they put any thought into the legislation at all they would be worried about how much it will cost them as a business owner or tax payer. How do I know this? I watched all three major network news programs (ABC, CBS, and NBC), local and national, and the ADA anniversary was filler on two programs for less than 15 seconds. This is deeply depressing and indicative of why 19 years after the law was passed equality for people with a disability has not changed substantially. Consider the following:
When the ADA was passed the unemployment rate among people with a disability was 70% Today the unemployment rate is 66%
The poverty rate among people with a disability is three times higher than those who do not have a disability. This has not changed one iota in 19 years.
It is estimated one in six Americans has a disability. When was the last time you saw a person with a visible disability at work or when shopping at a myriad of stores?
When was the last time you saw a blind person and their seeing eye dog at work, school, theatre, on a bus, at an airport, or in the community?
Does the college you went to or the school you attended teach American Sign Language as part of its language program?
Name three leaders in the history of the disability rights movement (FDR and Christopher Reeve do not count)?
What is the purpose of the ADA Restoration Act and when was it passed into law?
What does ADAPT stand for and advocate?
The above facts and questions are not or shouldn't be considered obscure. However, I estimate no more than a tiny fraction of people could answer the questions I posed. This is a problem and people are suffering because of it. People with a disability remain stigmatized, unemployed, and invisible. Progress, glacial at best, is an indictment of the American people. We as a country have failed. The ADA has failed. You my dear reader have failed. I have failed. We have all failed to follow and in some cases even acknowledge the law. This failure is not complicated. Indeed, is simple. The point of the ADA is that people with a disability cannot be discriminated against. In spite of this discrimination is common place. I know each and every day I leave my home I will encounter social and architectural barriers. Cab drivers in New York City will not stop to pick me up. The building where I teach has no ramp that conforms to the ADA and I cannot enter the bathroom. When I fly I routinely am treated poorly by airline personnel and significantly delayed getting off a plane. The public school my son attends in the affluent suburbs of New York has one accessible "short bus". The auditorium at my son's school is grossly inaccessible despite the fact it was just renovated.
The failure of the ADA is proof positive that one cannot legislate equality and civil rights for a disenfranchised group of people without the public support. And let me assure you there is no public support for the ADA and the civil rights of people with a disability. Let me also assure you that in spite of what the Supreme Court thinks people with a disability are a distinct and insular minority group. Economically, socially and politically people with a disability are oppressed. We people with a disability are not in positions of power. We are not elected to office, appointed as judges, hired as teachers, employed or visible in our community. The consequences of this are profound and its historic roots unknown. Disability in the broadest sense of the term is a bogey man--something people fear but rarely acknowledge. In the "olden days" institutions dotted the landscape where we warehoused people with a disability. The conditions at these institutions were horrific (think Willowbrook). The doors to these institutions may be closed and little blue wheelchair signs abound but people with a disability remain isolated at multiple levels. I know all about isolation because I am always the only person that uses a wheelchair where ever I go. I am the only person that uses a wheelchair at work. I am the only regular shopper at a number of stores I frequent that uses a wheelchair. I am always the only wheelchair user on a plane, train or bus. I am the only dinner at a restaurant that uses a wheelchair. I am the only person that attends a local parade, town or school board meeting that uses a wheelchair. I am the only professor my students have had that uses a wheelchair. You get the point but has the question why popped into your head? Why am I so singularly unusual? I am unusual because bigotry is the norm. Architectural and social barriers exist because we Americans permit them. We vote against inclusion and all those expensive elevators, wheelchair lifts, interpreters for the deaf, aides and special education teachers in our schools. We build multi million dollar athletic fields in our communities but fight like rabid dogs to prevent a group home from opening.
The average American does not argue for inclusion, that is left to people like me and as a result I am considered to be a narcissist, interested in my own welfare. For change to happen we crippled people must get angry and stay that way. We must become uppity cripples just as blacks were once called "uppity niggers". We must piss on charity, think Jerry Lewis, and assert our civil rights. That means get on the bus, plane, train and airplane and go to school or work. In return we must reach out and get other disenfranchised groups and the general public to support us. When people complain about our presence and the cost of access we must react--civil disobedience of the sort practiced by ADAPT works. We must spread this word and find a charismatic leader who has the chance to become a media darling. We need a go to guy or gal the media can count on when disability rights makes the news. The message must be clear: equality is not solely about architectural barriers but equal access in our communities, the ability to get to and from school or work, representation in government and private business. We have rights, equal rights, and they must be respected. It is the law. Break this law and you go to jail. Like I said the message is simple and the laws are already in place. We just need people to comply.
When the ADA was passed the unemployment rate among people with a disability was 70% Today the unemployment rate is 66%
The poverty rate among people with a disability is three times higher than those who do not have a disability. This has not changed one iota in 19 years.
It is estimated one in six Americans has a disability. When was the last time you saw a person with a visible disability at work or when shopping at a myriad of stores?
When was the last time you saw a blind person and their seeing eye dog at work, school, theatre, on a bus, at an airport, or in the community?
Does the college you went to or the school you attended teach American Sign Language as part of its language program?
Name three leaders in the history of the disability rights movement (FDR and Christopher Reeve do not count)?
What is the purpose of the ADA Restoration Act and when was it passed into law?
What does ADAPT stand for and advocate?
The above facts and questions are not or shouldn't be considered obscure. However, I estimate no more than a tiny fraction of people could answer the questions I posed. This is a problem and people are suffering because of it. People with a disability remain stigmatized, unemployed, and invisible. Progress, glacial at best, is an indictment of the American people. We as a country have failed. The ADA has failed. You my dear reader have failed. I have failed. We have all failed to follow and in some cases even acknowledge the law. This failure is not complicated. Indeed, is simple. The point of the ADA is that people with a disability cannot be discriminated against. In spite of this discrimination is common place. I know each and every day I leave my home I will encounter social and architectural barriers. Cab drivers in New York City will not stop to pick me up. The building where I teach has no ramp that conforms to the ADA and I cannot enter the bathroom. When I fly I routinely am treated poorly by airline personnel and significantly delayed getting off a plane. The public school my son attends in the affluent suburbs of New York has one accessible "short bus". The auditorium at my son's school is grossly inaccessible despite the fact it was just renovated.
The failure of the ADA is proof positive that one cannot legislate equality and civil rights for a disenfranchised group of people without the public support. And let me assure you there is no public support for the ADA and the civil rights of people with a disability. Let me also assure you that in spite of what the Supreme Court thinks people with a disability are a distinct and insular minority group. Economically, socially and politically people with a disability are oppressed. We people with a disability are not in positions of power. We are not elected to office, appointed as judges, hired as teachers, employed or visible in our community. The consequences of this are profound and its historic roots unknown. Disability in the broadest sense of the term is a bogey man--something people fear but rarely acknowledge. In the "olden days" institutions dotted the landscape where we warehoused people with a disability. The conditions at these institutions were horrific (think Willowbrook). The doors to these institutions may be closed and little blue wheelchair signs abound but people with a disability remain isolated at multiple levels. I know all about isolation because I am always the only person that uses a wheelchair where ever I go. I am the only person that uses a wheelchair at work. I am the only regular shopper at a number of stores I frequent that uses a wheelchair. I am always the only wheelchair user on a plane, train or bus. I am the only dinner at a restaurant that uses a wheelchair. I am the only person that attends a local parade, town or school board meeting that uses a wheelchair. I am the only professor my students have had that uses a wheelchair. You get the point but has the question why popped into your head? Why am I so singularly unusual? I am unusual because bigotry is the norm. Architectural and social barriers exist because we Americans permit them. We vote against inclusion and all those expensive elevators, wheelchair lifts, interpreters for the deaf, aides and special education teachers in our schools. We build multi million dollar athletic fields in our communities but fight like rabid dogs to prevent a group home from opening.
The average American does not argue for inclusion, that is left to people like me and as a result I am considered to be a narcissist, interested in my own welfare. For change to happen we crippled people must get angry and stay that way. We must become uppity cripples just as blacks were once called "uppity niggers". We must piss on charity, think Jerry Lewis, and assert our civil rights. That means get on the bus, plane, train and airplane and go to school or work. In return we must reach out and get other disenfranchised groups and the general public to support us. When people complain about our presence and the cost of access we must react--civil disobedience of the sort practiced by ADAPT works. We must spread this word and find a charismatic leader who has the chance to become a media darling. We need a go to guy or gal the media can count on when disability rights makes the news. The message must be clear: equality is not solely about architectural barriers but equal access in our communities, the ability to get to and from school or work, representation in government and private business. We have rights, equal rights, and they must be respected. It is the law. Break this law and you go to jail. Like I said the message is simple and the laws are already in place. We just need people to comply.
Wednesday, July 22, 2009
The Politics of Handicapped Parking
In the last year I have noticed a change in handicapped parking. This change has nothing to do with the fact the spots are always filled by people that do not appear to be handicapped. Frankly, I am so discouraged that I rarely try to park in this area. However, in the last few months I have concluded that I no longer have the right to park in handicapped parking. If I can can ski and kayak for miles upon miles do I really need to be 10 feet from the entrance to the supermarket? My son and I jokingly call handicapped parking "old people parking". We do not mean this in a nasty way. There are many elderly residents near our home who need to park close to the entrance. I watch these people get out of their car and slowly walk to the supermarket and think to myself they need the spot far more than I do. The main problem I have parking is that I need extra space to get in and out of my car. The wide spaces in handicapped parking are ideal. Instead I now tend to park off center or far away and take a spot where I doubt a person will use the park next to me. This works most of the time.
In the odd event I use handicapped parking I have noted a new phenomenon is taking place. When use handicapped parking some people object to my presence. Perhaps the fact I drive a VW SUV replete with kayak racks figures into their objection. And yes the people that object to my presence cannot help but know I use a wheelchair. The people who object are usually elderly or little kids. To me, this is a sign of social progress. The little kids want to know "why should that guy use handicapped parking?" This is a good question. If people with a disability want to reject the medical model of disability this is one consequence. Hence I too wonder why do I have handicapped parking plates? The practical answer is yes I need handicapped plates. I need the plates not because I need to be close to the entrance know traversing the parking lot is dangerous. I cannot tell you how many times I have nearly been hit by a car speeding along in the parking lot. Thus when I go to the mall or a super store like the Home Depot I use handicapped parking. I don't like doing this one bit. Sure handicapped parking is abused in the extreme. I estimate half of the people that use these spots have no need to use them and I wonder if I fit within this group.
When an elderly person asks me why I am in handicapped parking they take a long look at my car and the kayak roof rack. Often they remark I look fit, strong, and bet I could push my wheelchair far and paddle my boat a long way. This observation is correct. Like the little kids that ask me about handicapped parking, these elderly folks have a point. A good one at that. The question "why do I use handicapped parking" reinforces that I need to live by what I preach. I always write about the same topic on this blog and hammer home a civil rights viewpoint. Hence when I read the following words by Sandy Lahmann in the Summit Daily News I decided I no longer have the right to park in handicapped parking:
"It's time to recognize that disability is not always a medical experience. The medical aspects of disability are not the defining aspects of disability. Throw out the medical model.
Instead, disability rights activists promote the socio-political model of disability. Disability is not a medical problem. Disability is a social and political problem. It's not my medical status as a person with a disability that holds me back or gets in my way. It's my social and political status as a person with a disability that holds me back and gets in my way.
The biggest problems for myself and other people with disabilities include difficulty obtaining meaningful employment despite having education and skills, being stuck as a result with an income below poverty level, difficulty accessing transportation services, and prejudicial attitudes."
Ms. Lahmann is 100% correct. The problems I confront daily are social and have nothing to do with parking near the entrance to stores where I shop. I will leave those spots to the people that have a demonstrated physical need. My refusal to use handicapped parking is political and practical. If I am going to preach about and advocate for a social model of disability I need to live my life in a way that reflects that stance. At the practical level, I do not have a demonstrated physical need to park in handicapped parking. Hence, I am not truly entitled to use these spots. My use of them now is based on an out dated medical model of disability. The real test of my dedication to a social model of disability will come in the days, weeks and months to come. I am not going to go to motor vehicles and change my plates. That would be too much of a hassle, one hard to explain to a disinterested New York State Employee (though a perverse part of me would like to have this social encounter). The real challenge will come when it is rainy or snowy and the parking lot is filled. Will I drive around and around like millions of others or will I snag one of those prime spots near the entrance. I for one hope I have the dedication to live by words and political beliefs. As my son points out to me once in a while, "Dad, equality sucks".
In the odd event I use handicapped parking I have noted a new phenomenon is taking place. When use handicapped parking some people object to my presence. Perhaps the fact I drive a VW SUV replete with kayak racks figures into their objection. And yes the people that object to my presence cannot help but know I use a wheelchair. The people who object are usually elderly or little kids. To me, this is a sign of social progress. The little kids want to know "why should that guy use handicapped parking?" This is a good question. If people with a disability want to reject the medical model of disability this is one consequence. Hence I too wonder why do I have handicapped parking plates? The practical answer is yes I need handicapped plates. I need the plates not because I need to be close to the entrance know traversing the parking lot is dangerous. I cannot tell you how many times I have nearly been hit by a car speeding along in the parking lot. Thus when I go to the mall or a super store like the Home Depot I use handicapped parking. I don't like doing this one bit. Sure handicapped parking is abused in the extreme. I estimate half of the people that use these spots have no need to use them and I wonder if I fit within this group.
When an elderly person asks me why I am in handicapped parking they take a long look at my car and the kayak roof rack. Often they remark I look fit, strong, and bet I could push my wheelchair far and paddle my boat a long way. This observation is correct. Like the little kids that ask me about handicapped parking, these elderly folks have a point. A good one at that. The question "why do I use handicapped parking" reinforces that I need to live by what I preach. I always write about the same topic on this blog and hammer home a civil rights viewpoint. Hence when I read the following words by Sandy Lahmann in the Summit Daily News I decided I no longer have the right to park in handicapped parking:
"It's time to recognize that disability is not always a medical experience. The medical aspects of disability are not the defining aspects of disability. Throw out the medical model.
Instead, disability rights activists promote the socio-political model of disability. Disability is not a medical problem. Disability is a social and political problem. It's not my medical status as a person with a disability that holds me back or gets in my way. It's my social and political status as a person with a disability that holds me back and gets in my way.
The biggest problems for myself and other people with disabilities include difficulty obtaining meaningful employment despite having education and skills, being stuck as a result with an income below poverty level, difficulty accessing transportation services, and prejudicial attitudes."
Ms. Lahmann is 100% correct. The problems I confront daily are social and have nothing to do with parking near the entrance to stores where I shop. I will leave those spots to the people that have a demonstrated physical need. My refusal to use handicapped parking is political and practical. If I am going to preach about and advocate for a social model of disability I need to live my life in a way that reflects that stance. At the practical level, I do not have a demonstrated physical need to park in handicapped parking. Hence, I am not truly entitled to use these spots. My use of them now is based on an out dated medical model of disability. The real test of my dedication to a social model of disability will come in the days, weeks and months to come. I am not going to go to motor vehicles and change my plates. That would be too much of a hassle, one hard to explain to a disinterested New York State Employee (though a perverse part of me would like to have this social encounter). The real challenge will come when it is rainy or snowy and the parking lot is filled. Will I drive around and around like millions of others or will I snag one of those prime spots near the entrance. I for one hope I have the dedication to live by words and political beliefs. As my son points out to me once in a while, "Dad, equality sucks".
Sunday, July 19, 2009
Peter Singer and Health Care Reform
For the past few days Peter Singer's article "Why We Must Ration Health Care" published by the New York Times has been listed in the top ten most popular articles read on the NYT homepage. Singer is a "name scholar", sure to prompt a strong if not violent reaction from readers. I was once one of these people as Singer's writings could make me furious within paragraphs. I am no longer angered by Singer though his work and its influence on Obama's plans for health care reform worry me greatly. I am worried because significant changes in our health care system are inevitable and needed. The changes that are ahead of us will change the lives of the elderly, disabled, chronically sick, terminally ill, and those people with serious health problems such as cancer and a multitude of other conditions. What do these populations share in common? They are expensive and their lives are not valued. This is a social and economic problem. Scholars and activists have no neat ready solutions for the social problems we are confronted with today with regard to health care. No tidy sound bites make the national news. No nuanced debate is taking place that appeals to a general audience. In this void we have people like Singer who are described as bioethicists but are in fact ill tempered polemicists pushing a particular viewpoint. Thus when I read Singer's aforementioned article it struck me as more of the same polemics with a particular focus on QALY--quality adjusted life year.
For those unfamiliar with the health care industry, lacking any experience with disability or illness, and who don't have a clue as to what ableism is Singer's position is seductive. The health care system in America is hopelessly flawed--agreed. Rationing in health care already exists--agreed. Too many people suffer or die--agreed. Medical care is shockingly expensive--agreed. We need to maximize the "bang for our buck" as Obama puts it--agreed (sort of). All these statements are put in terms we can all directly relate to--starkly economic words. What is not discussed is the down side to a strictly economic discussion. For instance, Singer correctly points out economists have used QALY for 30 years to compare the cost effectiveness of medical procedures in this country and abroad. Singer argues that QALY "tells us what brings about the greatest health benefit, irrespective of where that benefit falls". Singer is half correct. QALY indicates the greatest economic benefit but significant problems arise when we start to think about the value of human life. Singer loves to use disability as an example in his work. He discusses a "hypothetical assumption that a year with quadraplegia is valued at only half as much as a year without". How he comes up with this hypothetical figure I do not know. What I do know is that people who are quadriplegics would strongly disagree about the value of their life post injury has to them. I also know, as do doctors, nurses, insurance companies, nurses, social workers, nursing homes, and many others that living a life as a quadriplegic or a paraplegic for that matter is expensive. Some of the problems encountered by paralyzed people are directly related to their physical condition (the vast majority have well established solutions) but the real issues are less medical and economic than they are social. No price tag can be placed on the social problems encountered by people with a disability. In contrast, it sure is easy to inflame the public when one writes about how much a wheelchair costs or the lifetime economic impact disability has on one's life. What is lost is the social reasons why life with a disability is so expensive and why stigma is still attached to disability. No one wants to think about why 66% of people with a disability are unemployed and likely without health insurance. The result is we as a culture consider some people to be costly--those populations I have already mentioned like the disabled. If we want to maximize health care benefits do you think any money will be spent on the elderly, terminally ill, or disabled people? The skeptic in me wants to scream "not a chance". A more likely scenario is we will spend as much as we value a given life. Thus if you are sick, disabled or elderly you are screwed. These people, humans one and all, are screwed because their lives are not valued and from an economic viewpoint not worthy of saving. These people are losers and remind me of Susan Sontag's seminal work Illness as a Metphor. Illness, Sontag wrote, was the "nightside of life". Singer does not think about the "nightside of life", he wants to divert our attention away from this sort of discussion. What Singer proposes via ideas like using QALY is nothing more than a giant smokescreen. He wants to hide the human element of health care and place a dollar amount on human life. Perhaps this should make me angrier than it does.
What puzzles me the most about Singer is why the NYT loves to publish his work. I suppose his name helps sell papers and fills a void. The void I refer to is how do we fix the health care system and make it accessible and affordable to all Americans? I wish I had an answer to this question and I bet if I did I would be a very rich and powerful man. Sadly, I have no faith the American government, Obama included, is going to provide the people of our nation with an efficient solution. If you have not noticed the government does not exactly operate all that efficiently. As a New Yorker this thought strikes me ever time I listen to the news about what is going on in Albany or visit the department of motor vehicles. My snide comments do not mean I am opposed to health care reform, or worse yet, I will use that dirt word that sends terror into the heart of my fellow Americans--nationalized medicine. To me health care reform comes down to choosing between the lesser of two evils or maybe even a hyrid system: Our choices as I see them are maintaining the current system and "trusting" the corporate structure that dictates how we access health care. This is untenable in my estimation. Alternatively, we can place our trust in the American government and look toward other countries that already operate health care systems such as those in Britain and Canada. This too is untenable. A possible solution lies between these extremes and given Obama's penchant for compromise this seems more likely. The real key is who will Obama listen to and seek council with. Obviously, Singer has the attention of the general public and the Obama administration. This causes me great concern in large part because I think Obama has distanced himself from disability rights groups and disability issues since he was elected. I thus wonder in his haste to foster change will Obama be like Singer and ignore the human element of health care thereby avoiding thinking about Sontag's nightside of life.
For those unfamiliar with the health care industry, lacking any experience with disability or illness, and who don't have a clue as to what ableism is Singer's position is seductive. The health care system in America is hopelessly flawed--agreed. Rationing in health care already exists--agreed. Too many people suffer or die--agreed. Medical care is shockingly expensive--agreed. We need to maximize the "bang for our buck" as Obama puts it--agreed (sort of). All these statements are put in terms we can all directly relate to--starkly economic words. What is not discussed is the down side to a strictly economic discussion. For instance, Singer correctly points out economists have used QALY for 30 years to compare the cost effectiveness of medical procedures in this country and abroad. Singer argues that QALY "tells us what brings about the greatest health benefit, irrespective of where that benefit falls". Singer is half correct. QALY indicates the greatest economic benefit but significant problems arise when we start to think about the value of human life. Singer loves to use disability as an example in his work. He discusses a "hypothetical assumption that a year with quadraplegia is valued at only half as much as a year without". How he comes up with this hypothetical figure I do not know. What I do know is that people who are quadriplegics would strongly disagree about the value of their life post injury has to them. I also know, as do doctors, nurses, insurance companies, nurses, social workers, nursing homes, and many others that living a life as a quadriplegic or a paraplegic for that matter is expensive. Some of the problems encountered by paralyzed people are directly related to their physical condition (the vast majority have well established solutions) but the real issues are less medical and economic than they are social. No price tag can be placed on the social problems encountered by people with a disability. In contrast, it sure is easy to inflame the public when one writes about how much a wheelchair costs or the lifetime economic impact disability has on one's life. What is lost is the social reasons why life with a disability is so expensive and why stigma is still attached to disability. No one wants to think about why 66% of people with a disability are unemployed and likely without health insurance. The result is we as a culture consider some people to be costly--those populations I have already mentioned like the disabled. If we want to maximize health care benefits do you think any money will be spent on the elderly, terminally ill, or disabled people? The skeptic in me wants to scream "not a chance". A more likely scenario is we will spend as much as we value a given life. Thus if you are sick, disabled or elderly you are screwed. These people, humans one and all, are screwed because their lives are not valued and from an economic viewpoint not worthy of saving. These people are losers and remind me of Susan Sontag's seminal work Illness as a Metphor. Illness, Sontag wrote, was the "nightside of life". Singer does not think about the "nightside of life", he wants to divert our attention away from this sort of discussion. What Singer proposes via ideas like using QALY is nothing more than a giant smokescreen. He wants to hide the human element of health care and place a dollar amount on human life. Perhaps this should make me angrier than it does.
What puzzles me the most about Singer is why the NYT loves to publish his work. I suppose his name helps sell papers and fills a void. The void I refer to is how do we fix the health care system and make it accessible and affordable to all Americans? I wish I had an answer to this question and I bet if I did I would be a very rich and powerful man. Sadly, I have no faith the American government, Obama included, is going to provide the people of our nation with an efficient solution. If you have not noticed the government does not exactly operate all that efficiently. As a New Yorker this thought strikes me ever time I listen to the news about what is going on in Albany or visit the department of motor vehicles. My snide comments do not mean I am opposed to health care reform, or worse yet, I will use that dirt word that sends terror into the heart of my fellow Americans--nationalized medicine. To me health care reform comes down to choosing between the lesser of two evils or maybe even a hyrid system: Our choices as I see them are maintaining the current system and "trusting" the corporate structure that dictates how we access health care. This is untenable in my estimation. Alternatively, we can place our trust in the American government and look toward other countries that already operate health care systems such as those in Britain and Canada. This too is untenable. A possible solution lies between these extremes and given Obama's penchant for compromise this seems more likely. The real key is who will Obama listen to and seek council with. Obviously, Singer has the attention of the general public and the Obama administration. This causes me great concern in large part because I think Obama has distanced himself from disability rights groups and disability issues since he was elected. I thus wonder in his haste to foster change will Obama be like Singer and ignore the human element of health care thereby avoiding thinking about Sontag's nightside of life.
Thursday, July 16, 2009
More on the Assisted Suicide
A blog I regularly read, Firstthings at Secondhandsmoke by Wesley J. Smith always makes me think. I do not agree with Smith all the time but even when I take exception to his words he makes me reconsider my views. For this reason alone, his blog is at the top of my reading list. Smith often effectively takes proponents of assisted suicide to task and yesterday he took exception to a stunning article by Barbara Coombs Lee of Compassion and Choices in the Huffington Post ("Healthcare Reform and the Price of Torture"). Lee's article shocked me. I understand reasoned debate. I understand why some people advocate for assisted suicide. I understand and do not like the fact that some people needlessly suffer at the end of their life. What I do not understand is fear mongering. Lee's article is designed to do generate fear--fear of doctors, fear of dying, fear of hospitals, generate mistrust, and drive a wedge between patient and health care providers. Who then can step in? Compassion and Choices who will lovingly end your life. This is is not helpful, indeed it is counter productive. How disturbing was Lee's article? Judge for yourself as I will quote a single passage that is indicative of the tone of her article:
Lee writes:
"In this country we usually torture people before we allow them to die of whatever is killing them --- cancer, emphysema, the multi-organ failure of diabetes or heart disease.
Like the episodes of military torture from which our nation is recovering, medical torture reflects a culture and a set of assumptions. Reform is not about just identifying a few "bad actors" and weeding them out. Our medical-industrial complex follows a cultural paradigm to do as many things to people near death as is medically possible. Our broken system rewards that paradigm with fee-for-service payments.
Standard routine is to torture those in the process of dying by inflicting upon them a host of toxic chemicals, invasive machinery and painful surgeries. It's the American way of dying --- agonized and prolonged imprisonment in an intensive care unit, pinned down under a maze of tubes and machines, enduring one medical procedure after another, unable to hold or be held by loved ones."
It's an American tragedy, really. Every player in the medical-industrial complex is in on it."
The above words by Lee are designed to incite people's rage. No doctor or institution wants patients to suffer much less be tortured to death as Lee maintains. I know this as do most people familiar with hospital settings. In part this is why we have hospice's today--to provide end of life care designed to ease pain and suffering. In this regard, great strides have been made in the last two decades. However, this does not mean people do not suffer at the end of their life. But there are reasons, many complex variables, that go into a death that is difficult and painful. This is a discussion worth having, one that can benefit us all. Thus I find Lee's words extremist. Excellent exceptions exist. For instance, I recently read an outstanding book by Robert Martensen, a physician, historian, and bioethicist. His text, A Life Worth Living: A Doctor's Reflections on Illness in a High-Tech Era, is must reading for any person about to enter the crucible of the hospital or facing end of life issues. You will find no clear cut answers in Martensen's book just conundrums encountered by patients and physicians that will force you to think about the way we live our lives and the manner in which it ends. I have spent more than a few nights tossing in turning in bed thinking about the issues raised by Martensen. For this, I am grateful to Martensen. In contrast, I am disappointed with Lee and Compassion and Choices. Lee did not make me think, rather she made me wonder why she needed to use such extreme rhetoric designed to generate fear and mistrust. This is not advocacy. This is not nuanced debate. This is not constructive at any level. For me, Lee's article reinforces why the debate associated concerning assisted suicide is so frustrating.
Lee writes:
"In this country we usually torture people before we allow them to die of whatever is killing them --- cancer, emphysema, the multi-organ failure of diabetes or heart disease.
Like the episodes of military torture from which our nation is recovering, medical torture reflects a culture and a set of assumptions. Reform is not about just identifying a few "bad actors" and weeding them out. Our medical-industrial complex follows a cultural paradigm to do as many things to people near death as is medically possible. Our broken system rewards that paradigm with fee-for-service payments.
Standard routine is to torture those in the process of dying by inflicting upon them a host of toxic chemicals, invasive machinery and painful surgeries. It's the American way of dying --- agonized and prolonged imprisonment in an intensive care unit, pinned down under a maze of tubes and machines, enduring one medical procedure after another, unable to hold or be held by loved ones."
It's an American tragedy, really. Every player in the medical-industrial complex is in on it."
The above words by Lee are designed to incite people's rage. No doctor or institution wants patients to suffer much less be tortured to death as Lee maintains. I know this as do most people familiar with hospital settings. In part this is why we have hospice's today--to provide end of life care designed to ease pain and suffering. In this regard, great strides have been made in the last two decades. However, this does not mean people do not suffer at the end of their life. But there are reasons, many complex variables, that go into a death that is difficult and painful. This is a discussion worth having, one that can benefit us all. Thus I find Lee's words extremist. Excellent exceptions exist. For instance, I recently read an outstanding book by Robert Martensen, a physician, historian, and bioethicist. His text, A Life Worth Living: A Doctor's Reflections on Illness in a High-Tech Era, is must reading for any person about to enter the crucible of the hospital or facing end of life issues. You will find no clear cut answers in Martensen's book just conundrums encountered by patients and physicians that will force you to think about the way we live our lives and the manner in which it ends. I have spent more than a few nights tossing in turning in bed thinking about the issues raised by Martensen. For this, I am grateful to Martensen. In contrast, I am disappointed with Lee and Compassion and Choices. Lee did not make me think, rather she made me wonder why she needed to use such extreme rhetoric designed to generate fear and mistrust. This is not advocacy. This is not nuanced debate. This is not constructive at any level. For me, Lee's article reinforces why the debate associated concerning assisted suicide is so frustrating.
Wednesday, July 15, 2009
Growth Attenuation: Ethics of Treatment
In 2006 and 2007 I published two articles about the Ashley Treatment in Counter Punch. The articles generated a tremendous amount of email--as in hundreds upon hundreds of replies. Most email I received was positive but a few were shockingly mean spirited and bordered on hate mail. What I learned in the days after I wrote the articles in Counter Punch about the Ashley Treatment and growth attenuation was that people had a violent reaction to the subject. People were either opposed to what had been done to Ashley, that is they thought the child was mutilated by doctors, or believed it was perfectly logical and reasonable medical treatment. This juxtaposition of extreme views has always intrigued me and I have followed the Ashley Treatment as it has evolved sine 2006 when the story exploded in the news. I have tried to understand both sides of the debate, and there are only two sides--those for and those opposed to the treatment. No middle ground exists.
I will acknowledge that I have consistently failed to understand why doctors and some parents of children with profound physical and cognitive deficits are drawn to what I consider an extreme medical solution to a problem that is largely social in nature. Between 2006 and today, many articles have appeared in medical journals about the Ashley Treatment. Doctors no longer refer the "Ashley Treatment" and instead discuss growth attenuation. This change is more than a matter of semantics and in my estimation is an attempt to avoid the harshest critiques outside of medicine. I have tried to remain objective but nothing I have read has led me to believe that growth attenuation is a viable treatment option. Indeed, I remain convinced that growth attenuation is ethically questionable at best. Yet doctors, Douglas Diekema among others, seem driven to establish growth attenuation as a viable treatment option. I do not understand this forceful drive and was disturbed to read an article in Pediatrics by Diekema, David Allen, Michael Kappy and Norman Fost entitled "Growth Attenuation Therapy: Principals for Practice" (June 2009; 123:1556-1561). This paper seeks to establish the principals for growth attenuation in practice, that is provide the scientific rationale for the effectiveness of growth attenuation. The authors identify seven such principals for growth attenuation treatment:
1. Nonambulatory children with profound cognitive disabilities.
2. Growth attenuation should be given the equal respect with growth promoting therapy.
3. Families caring for a child with cognitive disabilities should be informed about growth attenuation in early childhood.
4. Informed consent should give the risk and benefits of growth attenuation in both the short and long term.
5. Potential benefits of growth attenuation adds a new dimension for precocious puberty for children with a profound cognitive disability.
6. Ethics committee review before growth attenuation treatment.
7. Growth attenuation should be part of a research protocol.
I do not in any way question the motives of the doctors who promote growth attenuation. I have no doubt they are trying to do their best for children and their families. I am equally sure that doctors regularly encounter ethical dilemmas that have no obvious or clear cut answer. I can also readily understand men and women of science who have dedicated their lives to helping people actively seek to fix medical problems both physical and cognitive. Yet it seems to me that those that are promoting growth attenuation are ignoring or minimizing the history of this treatment and its implications. Growth attenuation is a both a medical and cultural response to developmentally fragile children. Like it or not, once a treatment such as growth attenuation exists its very existence provides a reason to use it. The rationale for why it is or is not utilized will change. In this regard there are profound flaws in the paper that undermine the use of growth attenuation. Among them are the following:
1. Doctors have failed to provide an adequate definition of what a cognitive disability is. The authors of the paper acknowledge this fact and in terms of growth attenuation "define profound cognitive disability as including nonambulation and requiring assistance with nearly every aspect of daily living, remaining completely dependent on others for even basic care even after careful attempts at training, and the inability to understand or express oneself in nuance ways". This is a vague definition and I can readily think of multiple conditions that fit under this rubric. Thus I cannot help but conclude a specific population or type of child is being selected and considered for growth attenuation while all others are automatically dismissed. This leads me to ask why is it ethically acceptable to attenuate the growth of children with a cognitive disability but no other human beings? What does this mean culturally? To me, this is a strong indication that in spite of what the law may state people with disabilities are not valued. Any and all means must be utilized to "correct" their deficits. This is an extreme medical solution to an issue that is partly medical but largely social. By social I mean the utter failure of our culture to acknowledge the civil rights of people with disabilities.
2. Doctors assume the permanence of a cognitive deficit is life long before growth attenuation is permitted. That is they are making a "reasonable assumption" no change will take place. This is a significant leap in logic. Doctors are human and mistakes are made every day in every hospital in the nation. Of course we do our best to minimize our errors but they are simply inevitable. This leads to me wonder what happens if doctors make a mistake diagnosing a child with a seemingly profound and life long cognitive deficit? What will they say to this person when they are an adult? I realize the odds of this happening are remote but it is possible. Many of us know people who have been misdiagnosed, told they were terminally ill only to discover this was not the case.
3. The paper maintains that selecting children to attenuate their growth is a "separate issue". I think not. If seven principals for practice can be written out in detail surely a central component must be determining exactly who can and cannot be subjected to growth attenuation treatment. The selection process is a core issue that is brushed aside. As one blogger has noted "profound cognitive disability is only an alibi, a magic they use to turn something that would be regarded as unethical if applied to physically disabled children without cognitive disability into something that looks OK when it is applied to children with a cognitive disability".
4. The authors maintain that doing nothing does not lead to the best outcome. The authors have a point here and provide a child with scoleosis as an example. In this regard, doing nothing for a child with scoleosis is indeed not advisable--and I speak from experience having had surgery long ago. However, I fail to see how children with a profound cognitive disability can be harmed by doing nothing. And is this not what doctors are in essence supposed to do--"do no harm". Surely treatment options for children and adults with profound cognitive disabilities exist that will render them medically stable.
5. To date, growth attenuation is limited to treating female children. There is a half a century track record of treating female children with hormones and the debate about the safety of this treatment is far from resolved. Medical attempts to alter the height of children remains controversial and has a checkered past. For a critical study see Normal at Any Cost. Although written by non academics the text provides a cautionary tale and contains a wealth of references.
6. The authors believe that adequate legal protections are in place to protect children that will be considered for growth attenuation. This is subject to debate. These legal protections did not protect Ashley who was unlawfully sterilized and added safe guards needed to be established. Assuming legal safe guards exist is simply not true and ignores a long history of violating the sanctity of disabled bodies in American history. I need not review the history of the Eugenics Movement here and will simply point out that tens of thousands of people were sterilized against their will. Ignoring this past as unpleasant as it may be sets a dangerous president.
None of the above flaws broach the subject of whether growth attenuation solves the quality of life issues it is designed to eliminate. Here I refer to the reduction in the ease and problems associated with caring for a person with a profound cognitive disability. This is not what I think medicine should be concerned with--social issues that have non medical solutions. Those solutions, providing adequate resources to families caring for children with profound cognitive disabilities, would exist if and when we value the lives of those individuals. Medicine and growth attenuation can change the human body but not the inherent cultural problem we are confronted with.
I will acknowledge that I have consistently failed to understand why doctors and some parents of children with profound physical and cognitive deficits are drawn to what I consider an extreme medical solution to a problem that is largely social in nature. Between 2006 and today, many articles have appeared in medical journals about the Ashley Treatment. Doctors no longer refer the "Ashley Treatment" and instead discuss growth attenuation. This change is more than a matter of semantics and in my estimation is an attempt to avoid the harshest critiques outside of medicine. I have tried to remain objective but nothing I have read has led me to believe that growth attenuation is a viable treatment option. Indeed, I remain convinced that growth attenuation is ethically questionable at best. Yet doctors, Douglas Diekema among others, seem driven to establish growth attenuation as a viable treatment option. I do not understand this forceful drive and was disturbed to read an article in Pediatrics by Diekema, David Allen, Michael Kappy and Norman Fost entitled "Growth Attenuation Therapy: Principals for Practice" (June 2009; 123:1556-1561). This paper seeks to establish the principals for growth attenuation in practice, that is provide the scientific rationale for the effectiveness of growth attenuation. The authors identify seven such principals for growth attenuation treatment:
1. Nonambulatory children with profound cognitive disabilities.
2. Growth attenuation should be given the equal respect with growth promoting therapy.
3. Families caring for a child with cognitive disabilities should be informed about growth attenuation in early childhood.
4. Informed consent should give the risk and benefits of growth attenuation in both the short and long term.
5. Potential benefits of growth attenuation adds a new dimension for precocious puberty for children with a profound cognitive disability.
6. Ethics committee review before growth attenuation treatment.
7. Growth attenuation should be part of a research protocol.
I do not in any way question the motives of the doctors who promote growth attenuation. I have no doubt they are trying to do their best for children and their families. I am equally sure that doctors regularly encounter ethical dilemmas that have no obvious or clear cut answer. I can also readily understand men and women of science who have dedicated their lives to helping people actively seek to fix medical problems both physical and cognitive. Yet it seems to me that those that are promoting growth attenuation are ignoring or minimizing the history of this treatment and its implications. Growth attenuation is a both a medical and cultural response to developmentally fragile children. Like it or not, once a treatment such as growth attenuation exists its very existence provides a reason to use it. The rationale for why it is or is not utilized will change. In this regard there are profound flaws in the paper that undermine the use of growth attenuation. Among them are the following:
1. Doctors have failed to provide an adequate definition of what a cognitive disability is. The authors of the paper acknowledge this fact and in terms of growth attenuation "define profound cognitive disability as including nonambulation and requiring assistance with nearly every aspect of daily living, remaining completely dependent on others for even basic care even after careful attempts at training, and the inability to understand or express oneself in nuance ways". This is a vague definition and I can readily think of multiple conditions that fit under this rubric. Thus I cannot help but conclude a specific population or type of child is being selected and considered for growth attenuation while all others are automatically dismissed. This leads me to ask why is it ethically acceptable to attenuate the growth of children with a cognitive disability but no other human beings? What does this mean culturally? To me, this is a strong indication that in spite of what the law may state people with disabilities are not valued. Any and all means must be utilized to "correct" their deficits. This is an extreme medical solution to an issue that is partly medical but largely social. By social I mean the utter failure of our culture to acknowledge the civil rights of people with disabilities.
2. Doctors assume the permanence of a cognitive deficit is life long before growth attenuation is permitted. That is they are making a "reasonable assumption" no change will take place. This is a significant leap in logic. Doctors are human and mistakes are made every day in every hospital in the nation. Of course we do our best to minimize our errors but they are simply inevitable. This leads to me wonder what happens if doctors make a mistake diagnosing a child with a seemingly profound and life long cognitive deficit? What will they say to this person when they are an adult? I realize the odds of this happening are remote but it is possible. Many of us know people who have been misdiagnosed, told they were terminally ill only to discover this was not the case.
3. The paper maintains that selecting children to attenuate their growth is a "separate issue". I think not. If seven principals for practice can be written out in detail surely a central component must be determining exactly who can and cannot be subjected to growth attenuation treatment. The selection process is a core issue that is brushed aside. As one blogger has noted "profound cognitive disability is only an alibi, a magic they use to turn something that would be regarded as unethical if applied to physically disabled children without cognitive disability into something that looks OK when it is applied to children with a cognitive disability".
4. The authors maintain that doing nothing does not lead to the best outcome. The authors have a point here and provide a child with scoleosis as an example. In this regard, doing nothing for a child with scoleosis is indeed not advisable--and I speak from experience having had surgery long ago. However, I fail to see how children with a profound cognitive disability can be harmed by doing nothing. And is this not what doctors are in essence supposed to do--"do no harm". Surely treatment options for children and adults with profound cognitive disabilities exist that will render them medically stable.
5. To date, growth attenuation is limited to treating female children. There is a half a century track record of treating female children with hormones and the debate about the safety of this treatment is far from resolved. Medical attempts to alter the height of children remains controversial and has a checkered past. For a critical study see Normal at Any Cost. Although written by non academics the text provides a cautionary tale and contains a wealth of references.
6. The authors believe that adequate legal protections are in place to protect children that will be considered for growth attenuation. This is subject to debate. These legal protections did not protect Ashley who was unlawfully sterilized and added safe guards needed to be established. Assuming legal safe guards exist is simply not true and ignores a long history of violating the sanctity of disabled bodies in American history. I need not review the history of the Eugenics Movement here and will simply point out that tens of thousands of people were sterilized against their will. Ignoring this past as unpleasant as it may be sets a dangerous president.
None of the above flaws broach the subject of whether growth attenuation solves the quality of life issues it is designed to eliminate. Here I refer to the reduction in the ease and problems associated with caring for a person with a profound cognitive disability. This is not what I think medicine should be concerned with--social issues that have non medical solutions. Those solutions, providing adequate resources to families caring for children with profound cognitive disabilities, would exist if and when we value the lives of those individuals. Medicine and growth attenuation can change the human body but not the inherent cultural problem we are confronted with.
Sunday, July 12, 2009
Assisted Suicide: A Necessary but Depressing Debate
In the past I have posted a number of entries on assisted suicide. The well funded, organized, and influential groups that advocate for assisted suicide laws in this country and abroad have enjoyed great success in the last few years. I find their success deeply disturbing for many reasons foremost among them is the logic that provides the theoretical and practical basis for assisted suicide laws deeply flawed. On the surface, the laws that advocate for assisted suicide make sense. Surely no one wants to see a loved on, or any human for that matter, needlessly suffer when death is inevitable. The fact is we humans are living longer thanks to modern medicine and as a result horror stories about the end of life abound. However, when the emotional angst of the assisted suicide argument is removed and one takes a long hard look at end of life issues two facts emerge: first, assisted suicide laws are not necessary and, second, the people who take advantage of assisted suicide laws or the "services" of groups such as Dignitas are not terminally ill.
I have no doubt advocates for assisted suicide completely disagree with my assessment. The debate between those for and those opposed to assisted suicide is not resolved, their disagreements long long standing, and I see no reason to believe common ground can be found. This is unfortunate because too many people needlessly suffer before they die, a situation that must be resolved. But killing people, what assisted suicide seeks to do, is not the answer. Thus it is imperative that the two sides of this debate seek common ground and this is where I think scholars in disability studies and activists in disability rights have much to contribute. Yet such activists and scholars within the field of disability are hopelessly divided, a thought that came to me after reading two fascinating and pointed commentaries by Stephen Drake of Not Dead Yet (see Not Dead Yet blog for Wednesday July 8 entitled "Tom Shakespeare Makes a Less Than Honest Case for Assisted Suicide") and Tom Shakespeare, a British disability studies scholar (See "A Chance for Dignity and Dying", Guardian July 7).
Drake and Shakespeare respective views are radically different. Readers of this blog will likely know Drake's work via Not Dead Yet. Drake is along time and influential advocate against assisted suicide. I consider his blog Not Dead Yet to be mandatory reading for anyone interested in the subject. My views are very similar to Drake and I have the utmost respect not only for his advocacy but his writing. I have a similar respect for Shakespeare but often find myself at odds with his views--at least since 2000 when he made a controversial break with disability scholars in Britain that culminated in his highly polemical 2006 book Disability Rights and Wrongs. Between 2000 and the present Shakespeare has come out in favor of legalizing suicide for terminally ill people. Shakespeare has also been extremely critical if not disrespectful of disability advocates and scholars that oppose assisted suicide. Thus I consider Shakespeare to be the "bad boy" of disability rights scholarship. He is without question a contrarian, one who is not only very smart but seems to take delight in holding views that are at odds with the majority. Shakespeare's views on assisted suicide and the social model of disability are two examples. While I do not agree with Shakespeare's views on assisted suicide he must be taken very seriously. This is why I was delighted to see Drake dissect Shakespeare's editorial in the Guardian in which he advocated as a disability rights scholar for assisted suicide. Like Drake, I found Shakespeare's position and arguments weak and misleading. I also agree with Drake that Shakespeare is simply wrong in advocating for effective assisted suicide legislation in Britain. However, I think Drake could temper his critique because writing that Shakespeare's editorial relies on "easy platitudes, fuzzy assertions and some pretty gross misrepresentations of euthanasia laws" only heightens an existing divide between the two men. In my estimation Drake is correct in his assertion about Shakespeare's editorial in the Guardian but neglects to point readers in the direction to Shakespeare's aforementioned book, especially chapter 8 on "Autonomy and the end of life". Instead of going for the jugular in his pointed critique of Shakespeare I wish Drake had stuck to the facts--they are not only in his favor but on the side of any reasoned argument against assisted. For instance, Shakespeare is clear on the fact he favors assisted suicide for only those who are terminally ill. Yet Shakespeare does not in any way define who is and is not terminally ill. This is not a matter of minor debate but a central issue that gets to the core of assisted suicide at a practical and theoretical level.
Both Shakespeare and Drake know all too well that people who are not terminally ill have had assisted suicides. The case of Daniel James that I have written about in the past is but one of many examples. James death was heart wrenching and highlights why disability rights scholars and activists need to play an active role in the discussion about assisted suicide. Like it or not, people with disabilities are not equal, face overwhelming social stigma, and have a great deal of trouble accessing basic and even substandard health care in this country and abroad. The consequences of these social inequities are profound and place people with disabilities at a high risk. A high risk for what? I can readily envision a world in which it would be all too easy to classify a host of medical conditions as "terminal". People with ALS, MS, SCI, and a host of other debilitating but not life threatening conditions could be deemed terminally ill. Why think of the savings! No wheelchairs would need to be manufactured nor would ramps or elevators be required. If you think I am kidding, you are very wrong. In my lifetime I have witnessed profound changes in the way people with SCI are treated. When I was paralyzed 30 years ago people with high cervical injuries, think Christopher Reeve, died. They did not die from their injury but the belief no person with a high level cervical injury could ever have a good quality of life. Hence such people died of neglect and doctors let "nature take its course". This is both misguided, dangerous and has significant implications for all those that are disenfranchised--the elderly, disabled, chronically ill among many others.
Shakespeare concludes his Guardian editorial by noting that all people, those with and without a disability, should have control over their lives as well as how their life ends. He also pointedly states "being disabled in itself is no reason to die". I do not disagree with these statements but know that in theory Shakespeare may be correct but the reality as I know it is very different. We do not all get to choose the way we die nor are we born equal. We also all have limits, social and economic, that dictate where and how we live. This has an impact on how we access health care and how we end our life. I for one fear old age. I do not fear aging and infirmity. I know all too much about the limits of the human body. What I fear is the lack of social respect and value my life will have as I age. I wonder will the fact my body is not easy to care and labor intensive hasten the end of my life? Will I die of a giant bed sore because the people charged with my care do not have the time or will to regularly move my body if I am no longer capable of doing this? Will my inevitable death be perceived as a release from being paralyzed and hence receive substandard care? These fears are very real and shed light on a social problem that people with disabilities must be a part of in resolving. It is why we must be part of the debate on assisted suicide--we have unique insights that others do not. We are accustom to defending our rights, that is our very right to exist and escape what Harriett McBryde Johnson once described as the "disability gulag". All our voices need to be heard--people like me via my blog, Drake via Not Dead Yet and Shakespeare in spite of the fact I do not agree with his views.
I have no doubt advocates for assisted suicide completely disagree with my assessment. The debate between those for and those opposed to assisted suicide is not resolved, their disagreements long long standing, and I see no reason to believe common ground can be found. This is unfortunate because too many people needlessly suffer before they die, a situation that must be resolved. But killing people, what assisted suicide seeks to do, is not the answer. Thus it is imperative that the two sides of this debate seek common ground and this is where I think scholars in disability studies and activists in disability rights have much to contribute. Yet such activists and scholars within the field of disability are hopelessly divided, a thought that came to me after reading two fascinating and pointed commentaries by Stephen Drake of Not Dead Yet (see Not Dead Yet blog for Wednesday July 8 entitled "Tom Shakespeare Makes a Less Than Honest Case for Assisted Suicide") and Tom Shakespeare, a British disability studies scholar (See "A Chance for Dignity and Dying", Guardian July 7).
Drake and Shakespeare respective views are radically different. Readers of this blog will likely know Drake's work via Not Dead Yet. Drake is along time and influential advocate against assisted suicide. I consider his blog Not Dead Yet to be mandatory reading for anyone interested in the subject. My views are very similar to Drake and I have the utmost respect not only for his advocacy but his writing. I have a similar respect for Shakespeare but often find myself at odds with his views--at least since 2000 when he made a controversial break with disability scholars in Britain that culminated in his highly polemical 2006 book Disability Rights and Wrongs. Between 2000 and the present Shakespeare has come out in favor of legalizing suicide for terminally ill people. Shakespeare has also been extremely critical if not disrespectful of disability advocates and scholars that oppose assisted suicide. Thus I consider Shakespeare to be the "bad boy" of disability rights scholarship. He is without question a contrarian, one who is not only very smart but seems to take delight in holding views that are at odds with the majority. Shakespeare's views on assisted suicide and the social model of disability are two examples. While I do not agree with Shakespeare's views on assisted suicide he must be taken very seriously. This is why I was delighted to see Drake dissect Shakespeare's editorial in the Guardian in which he advocated as a disability rights scholar for assisted suicide. Like Drake, I found Shakespeare's position and arguments weak and misleading. I also agree with Drake that Shakespeare is simply wrong in advocating for effective assisted suicide legislation in Britain. However, I think Drake could temper his critique because writing that Shakespeare's editorial relies on "easy platitudes, fuzzy assertions and some pretty gross misrepresentations of euthanasia laws" only heightens an existing divide between the two men. In my estimation Drake is correct in his assertion about Shakespeare's editorial in the Guardian but neglects to point readers in the direction to Shakespeare's aforementioned book, especially chapter 8 on "Autonomy and the end of life". Instead of going for the jugular in his pointed critique of Shakespeare I wish Drake had stuck to the facts--they are not only in his favor but on the side of any reasoned argument against assisted. For instance, Shakespeare is clear on the fact he favors assisted suicide for only those who are terminally ill. Yet Shakespeare does not in any way define who is and is not terminally ill. This is not a matter of minor debate but a central issue that gets to the core of assisted suicide at a practical and theoretical level.
Both Shakespeare and Drake know all too well that people who are not terminally ill have had assisted suicides. The case of Daniel James that I have written about in the past is but one of many examples. James death was heart wrenching and highlights why disability rights scholars and activists need to play an active role in the discussion about assisted suicide. Like it or not, people with disabilities are not equal, face overwhelming social stigma, and have a great deal of trouble accessing basic and even substandard health care in this country and abroad. The consequences of these social inequities are profound and place people with disabilities at a high risk. A high risk for what? I can readily envision a world in which it would be all too easy to classify a host of medical conditions as "terminal". People with ALS, MS, SCI, and a host of other debilitating but not life threatening conditions could be deemed terminally ill. Why think of the savings! No wheelchairs would need to be manufactured nor would ramps or elevators be required. If you think I am kidding, you are very wrong. In my lifetime I have witnessed profound changes in the way people with SCI are treated. When I was paralyzed 30 years ago people with high cervical injuries, think Christopher Reeve, died. They did not die from their injury but the belief no person with a high level cervical injury could ever have a good quality of life. Hence such people died of neglect and doctors let "nature take its course". This is both misguided, dangerous and has significant implications for all those that are disenfranchised--the elderly, disabled, chronically ill among many others.
Shakespeare concludes his Guardian editorial by noting that all people, those with and without a disability, should have control over their lives as well as how their life ends. He also pointedly states "being disabled in itself is no reason to die". I do not disagree with these statements but know that in theory Shakespeare may be correct but the reality as I know it is very different. We do not all get to choose the way we die nor are we born equal. We also all have limits, social and economic, that dictate where and how we live. This has an impact on how we access health care and how we end our life. I for one fear old age. I do not fear aging and infirmity. I know all too much about the limits of the human body. What I fear is the lack of social respect and value my life will have as I age. I wonder will the fact my body is not easy to care and labor intensive hasten the end of my life? Will I die of a giant bed sore because the people charged with my care do not have the time or will to regularly move my body if I am no longer capable of doing this? Will my inevitable death be perceived as a release from being paralyzed and hence receive substandard care? These fears are very real and shed light on a social problem that people with disabilities must be a part of in resolving. It is why we must be part of the debate on assisted suicide--we have unique insights that others do not. We are accustom to defending our rights, that is our very right to exist and escape what Harriett McBryde Johnson once described as the "disability gulag". All our voices need to be heard--people like me via my blog, Drake via Not Dead Yet and Shakespeare in spite of the fact I do not agree with his views.
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