The harder President Obama pushes for health care reform the more hysterical its advocates and proponents become. In this "debate" not a single individual or political entity has impressed me. The Democrats and Republicans are doing what they do best--being politicians with an extreme bias. Semantics, power plays, harsh sounds bites are all the norm. Nuanced debate is absent. Reason is replaced by inflexible and rigid unchanging views. Into this void is Obama who appears with every passing day to be the master at political compromise. This is bitterly disappointing to me but anything and anyone is better than former President Bush and his Republican administration. This thought came to me when I read Sarah Palin's Facebook commentary about health care. She wrote:
"The Democrats promise that a government health care system will reduce the cost of health care, but as the economist Thomas Sowell has pointed out, government health care will not reduce the cost; it will simply refuse to pay the cost. And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil."
Pailn's rhetoric, right or wrong, is counter productive. I have chosen this quote because of the use of the word evil. It reminded me of Bush, the abuse of religion on the part of politicians, and the utter lack of the ability to enter into a reasonable discussion about health care reform. To be fair, I need not rely on Palin's words. Nancy Pelosi, on the other side of the debate, is equally inflexible and hysterical. Both those for and against health care reform raise good points. For instance, I agree with Palin that people who are elderly or disabled are likely to to suffer if health care reform is passed as it currently is proposed. This doe s not make the proposal, HR 3200, "evil", rather inherently flawed. Instead of using such inflammatory wording Palin could have stated that funding for people like her son in the form of group homes is grossly under inadequate. She could have noted that group homes still encounter stiff resistance when they open and question why is this the case. This in turn could have led her to discuss the history of discrimination people with cognitive disabilities have experienced thus emphasizing the need to fund group homes and community based living for people with disabilities and the elderly.
I do not see a debate taking place about health care reform among the general population as well. I was away last weekend and attended a great party. Surrounded by conservatives who oppose Obama I was taken aback by the vigor with which they opposed health care reform. Obama was characterized as being a "communist", one who wanted to destroy capitalism, and that providing "free health care to people who did not have a real job would kill the economy". When I asked what should be people who are ill or elderly do if they have no health insurance they had no reply. I asked what do they suggest paralyzed people do when a wheelchair breaks and the replacement cost is $5,000 and not covered by insurance. I also asked did it make any economic sense that medications are so expensive it leads many to go bankrupt. Again, they had no ready answer. I asked these questions not to undermine their thoughts, well maybe I did, but to get them to think in a more nuanced way. Health care reform is in my estimation needed, especially for people who face staggering medical bills and cannot afford insurance. This fact is acknowledged but again extreme views and examples are used to illustrate this point. Thus I lay blame with not only politicians who rely on rhetoric and sound bites but the media that thrives on such clips. Whipping people into a frenzy is all too easy. Debate, reasonable discussions among those that disagree but are respectful to the opposition does not exactly make must see television. Think CSPAN and a long detailed discussion of the minutiae of the 1,017 page health care reform bill. Such viewing may not be entertaining but it sure is important. I simply wish we had much more of this.
Tuesday, August 11, 2009
Sunday, August 2, 2009
The Medical Industrial Complex: Normalcy Rules!
This morning I realized that I have written 170 posts since I started this blog. Wow, that is a lot of text with what I hope is an obvious and consistent theme: disability rights are akin to equal rights. We people with a disability are equal to all those without a disability. The severity of any given disability is not relevant. The issue is civil rights and equality. How and why people with a disability are disenfranchised is my central interest because the ramifications are profound. People with disabilities are literally dying, unemployed, subjected to extreme medical procedures, stigmatized, isolated, segregated, beaten, and exploited. I have written about all this with dedication, passion, and caring. Like most people with a disability, I want to be equal, merely ordinary. Until that happens for me and all people with a disability I will continue to be a bad cripple and rail against injustice.
What I have not written about, not once, is my academic interest in the history of anthropology and how the military industrial complex has shaped the discipline. The term, military industrial complex, was coined by Eisenhower and fascinates me. It has changed not just anthropology but college education and our entire economy. This, of course, is well beyond the realm of this blog. However, the military industrial complex has a direct connection to our health care system and disability. Thirty years ago our health care system was characterized by the editor of the New England Journal of Medicine as the "medical industrial complex". I have come of age in that system or medical industrial complex as a "normal" child for 10 years, a profoundly ill person with neurological deficits for 10 years, and my adult life as a person with a disability. Growing up it depressed me that so little could be done to help people with serious neurological conditions. Far too many children I knew died before they became adults. Today, I am stunned by medical and scientific advances that extend life and good health. I am a direct recipient of these advances. Yet I have no doubt that our health care system is profoundly flawed and in desperate need of major change. The answer to our inherently flawed health care system does not exist in other nations. The British, Canadians, French, and Germans who we most often look toward for comparison have equally flawed health care systems.
I wish I could write that I have the solution to our health care woes. However, no single individual is that smart; not even Peter Singer, the media darling who has an insidinary impact on the health care debate. To me, the problem with our health care system is directly related to the human penchant to fit into the mainstream, to be normal, that is healthy. This thought came to me after reading Stephen Kuusisto's post "What Disability Knows: Part One and Part Two" (see Planet of the Blind). Kuusisto points out that all those with a visible disability can never be perceived as normal. Disability is thus mistakenly married to normativity. Divorce is not possible. I, and many others who study disability, agree. The stigma attached to the calamity known as disability is as unfortunate as it is unnecessary. We humans are a diverse bunch and this diversity is the essence of our strength. Yet we fear difference and particularly disability. In disability I see only potential, adaptation, and the best that humanity has to offer. I do not see illness, infirmity, or limits. In Kuusisto's estimation the idea of normal or mainstream is destructive and he recently "told a group of artists and advocates for people with disabilities at the Kennedy Center for the Arts in Washington, DC that the mainstream is one of the great, tragic ideas of our time. There is no mainstream. No one is physically solid, reliable, capable as a solo act, protected against catastrophe; there is only the stream in which each one of us must work to find solace in meaning". This is not only eloquent writing but brilliant thinking in terms of health care: who decides what is "normal" or "mainstream"? The answer is as simple as it is dangerous: the medical industrial complex.
The medical industrial complex is much like the military industrial complex I study in my historical work about anthropology. For a military industrial complex to exist, war or the fear of war must be present. Since 1941, the attack on Pearl Harbor and the more recent events of September 11, 2001 we have had an abundance of fear mongering and war. In the medical industrial complex fear is required as well. What do we humans fear? Ill-health, disease, the absence of normalcy and disability. Ill-health is why the medical industrial complex exists. The sick, infirm, and disabled are the primary consumers. The big bucks and profit is in abnormality, exactly what we fear. Healthy people, the mainstream, need not apply. Healthy people are the worst customers. What I want to know is how do we determine what is normal? Who is normal and why are they normal? As one who has not been perceived to be "normal" in thirty years I ask this question because I know power rests among the normate to use Rose Marie Garland-Thompson's awkward term. The normates define and control what it means to be different. These people, normates, dictate not only what is healthy but how ill health is treated. Certain illnesses carry great stigma, AIDS for instance, while others are deemed so rare they are not worth researching (think ALS or Lou Gehrig's Disease). This is why disability studies has much to offer the debate about our health care system--our bodies, disabled bodies, have been medicalized. Disability studies is the one field that is devoted to this subject in the form of why. Why is the disabled body so objectionable? What are the practical and theoretical implications of the rejection of the disabled body?
Policy makers, if they were smart, would listen carefully to what disability studies scholars have to say. We people with a disability are the best customers of the medical industrial complex. The problem is that we people with a disability and by extension disability studies scholars are outsiders. The debate over health care is dictated by people like Peter Signer and others who want to get the most bang for their buck and know nothing about disability. I am not dismissing the great cost involved in disability. I am intimately familiar with this. Rather, I want to point out what many know but do not acknowledge: the greatest economic savings do not rest among those that are ill or disabled. If we want to save money and lives the greatest economic and human savings are to found keeping people healthy. Healthy people, normates, are cheap and powerful. The normate, those that control the medical industrial complex, profit from illness. The largest profits are made diagnosing and treating the sick who get well. Just ask anyone that has undergone basic diagnostic testing, medical treatment and been deemed healthy afterwards. The money, capitalistic profit and core of our medical industrial complex, is dependent upon abnormality. Money is made when the medical industrial complex finds perceived pathology. Our perception of what is normal has become increasingly narrow. The reason is simple--profits. The more abnormal one becomes the greater the profit margin. We crippled people have become too costly and will be the direct targets of cost saving measures. Worse, our costly asses are not valued and it is all too easy to moan and groan about the costs of disability and old age. Why treat an elderly person who will die in the near future? Why should an insurance company pay for a $5,000 wheelchair when a wheelchair for $500 will suffice? These sorts of decisions are short sighted savings and laden with value judgments that keep me up at night.
If we want to save money this is what I propose: make basic health care affordable. Lower the price of medications for conditions such as high blood pressure so that even the poorest Americans can afford it. If we did this, perhaps what is known as the stroke belt among black Americans in the Southeast would not exist. Force people to live a healthy life style via gut wrenching taxes. If you want to smoke make it cost prohibitive. Raise the price of cigarettes by $10 a pack every year for the next five years and few people will smoke. If we don't want kids to drink soda and eat unhealthy foods ban them from schools. Tax soda and junk foods so severely they are unaffordable. I am not naive. I know we lack the resolve to follow through on my outlandish suggestions. I also know if we did it would have a profound and unsettling impact on our economy; in other words corporations would suffer. Our government will never let this happen and this is part of the problem I am trying to emphasize with my extreme examples. Disability has been eliminated from the discourse on health care reform or perhaps more accurately it is framed only as it pertains to "savings". That is disability is abnormality, costly, and must be reduced. To me, this is akin to targeting and eliminating what makes us so special and diverse. The advances in our medical industrial complex have created more diversity--I see people at adaptive sports programs that are amazingly unique. I marvel at the human spirit and adaptive ability we all possess. I am equally sad to know that physical and cognitive disability is stigmatized and there are times this knowledge makes me ashamed to be human.
Let me make one final point in this long and rambling post. I am not opposed to rationing health care. I can live with rationing health care but I can only do so if all are treated equally. Based on what I read and sense, we people with a disability are in for a very rough experience. Disability scholars may not have all the answers or even some of the answers but they must be part of the debate. The elderly, chronically ill, long term cancer survivors, people with a disability all have experience with our flawed health system and yet they are not sitting down to talk with President Obama or his advisors. This has me worried. People with first hand experience need to play a central role in any discussion about the medical industrial complex. I do not see this taking place and cannot help but conclude the so called health care reform in retrospect may seem like the biggest corporate grab for wealth our nation will ever witness. And who will get hurt the most? Why of course those that are the most vulnerable.
What I have not written about, not once, is my academic interest in the history of anthropology and how the military industrial complex has shaped the discipline. The term, military industrial complex, was coined by Eisenhower and fascinates me. It has changed not just anthropology but college education and our entire economy. This, of course, is well beyond the realm of this blog. However, the military industrial complex has a direct connection to our health care system and disability. Thirty years ago our health care system was characterized by the editor of the New England Journal of Medicine as the "medical industrial complex". I have come of age in that system or medical industrial complex as a "normal" child for 10 years, a profoundly ill person with neurological deficits for 10 years, and my adult life as a person with a disability. Growing up it depressed me that so little could be done to help people with serious neurological conditions. Far too many children I knew died before they became adults. Today, I am stunned by medical and scientific advances that extend life and good health. I am a direct recipient of these advances. Yet I have no doubt that our health care system is profoundly flawed and in desperate need of major change. The answer to our inherently flawed health care system does not exist in other nations. The British, Canadians, French, and Germans who we most often look toward for comparison have equally flawed health care systems.
I wish I could write that I have the solution to our health care woes. However, no single individual is that smart; not even Peter Singer, the media darling who has an insidinary impact on the health care debate. To me, the problem with our health care system is directly related to the human penchant to fit into the mainstream, to be normal, that is healthy. This thought came to me after reading Stephen Kuusisto's post "What Disability Knows: Part One and Part Two" (see Planet of the Blind). Kuusisto points out that all those with a visible disability can never be perceived as normal. Disability is thus mistakenly married to normativity. Divorce is not possible. I, and many others who study disability, agree. The stigma attached to the calamity known as disability is as unfortunate as it is unnecessary. We humans are a diverse bunch and this diversity is the essence of our strength. Yet we fear difference and particularly disability. In disability I see only potential, adaptation, and the best that humanity has to offer. I do not see illness, infirmity, or limits. In Kuusisto's estimation the idea of normal or mainstream is destructive and he recently "told a group of artists and advocates for people with disabilities at the Kennedy Center for the Arts in Washington, DC that the mainstream is one of the great, tragic ideas of our time. There is no mainstream. No one is physically solid, reliable, capable as a solo act, protected against catastrophe; there is only the stream in which each one of us must work to find solace in meaning". This is not only eloquent writing but brilliant thinking in terms of health care: who decides what is "normal" or "mainstream"? The answer is as simple as it is dangerous: the medical industrial complex.
The medical industrial complex is much like the military industrial complex I study in my historical work about anthropology. For a military industrial complex to exist, war or the fear of war must be present. Since 1941, the attack on Pearl Harbor and the more recent events of September 11, 2001 we have had an abundance of fear mongering and war. In the medical industrial complex fear is required as well. What do we humans fear? Ill-health, disease, the absence of normalcy and disability. Ill-health is why the medical industrial complex exists. The sick, infirm, and disabled are the primary consumers. The big bucks and profit is in abnormality, exactly what we fear. Healthy people, the mainstream, need not apply. Healthy people are the worst customers. What I want to know is how do we determine what is normal? Who is normal and why are they normal? As one who has not been perceived to be "normal" in thirty years I ask this question because I know power rests among the normate to use Rose Marie Garland-Thompson's awkward term. The normates define and control what it means to be different. These people, normates, dictate not only what is healthy but how ill health is treated. Certain illnesses carry great stigma, AIDS for instance, while others are deemed so rare they are not worth researching (think ALS or Lou Gehrig's Disease). This is why disability studies has much to offer the debate about our health care system--our bodies, disabled bodies, have been medicalized. Disability studies is the one field that is devoted to this subject in the form of why. Why is the disabled body so objectionable? What are the practical and theoretical implications of the rejection of the disabled body?
Policy makers, if they were smart, would listen carefully to what disability studies scholars have to say. We people with a disability are the best customers of the medical industrial complex. The problem is that we people with a disability and by extension disability studies scholars are outsiders. The debate over health care is dictated by people like Peter Signer and others who want to get the most bang for their buck and know nothing about disability. I am not dismissing the great cost involved in disability. I am intimately familiar with this. Rather, I want to point out what many know but do not acknowledge: the greatest economic savings do not rest among those that are ill or disabled. If we want to save money and lives the greatest economic and human savings are to found keeping people healthy. Healthy people, normates, are cheap and powerful. The normate, those that control the medical industrial complex, profit from illness. The largest profits are made diagnosing and treating the sick who get well. Just ask anyone that has undergone basic diagnostic testing, medical treatment and been deemed healthy afterwards. The money, capitalistic profit and core of our medical industrial complex, is dependent upon abnormality. Money is made when the medical industrial complex finds perceived pathology. Our perception of what is normal has become increasingly narrow. The reason is simple--profits. The more abnormal one becomes the greater the profit margin. We crippled people have become too costly and will be the direct targets of cost saving measures. Worse, our costly asses are not valued and it is all too easy to moan and groan about the costs of disability and old age. Why treat an elderly person who will die in the near future? Why should an insurance company pay for a $5,000 wheelchair when a wheelchair for $500 will suffice? These sorts of decisions are short sighted savings and laden with value judgments that keep me up at night.
If we want to save money this is what I propose: make basic health care affordable. Lower the price of medications for conditions such as high blood pressure so that even the poorest Americans can afford it. If we did this, perhaps what is known as the stroke belt among black Americans in the Southeast would not exist. Force people to live a healthy life style via gut wrenching taxes. If you want to smoke make it cost prohibitive. Raise the price of cigarettes by $10 a pack every year for the next five years and few people will smoke. If we don't want kids to drink soda and eat unhealthy foods ban them from schools. Tax soda and junk foods so severely they are unaffordable. I am not naive. I know we lack the resolve to follow through on my outlandish suggestions. I also know if we did it would have a profound and unsettling impact on our economy; in other words corporations would suffer. Our government will never let this happen and this is part of the problem I am trying to emphasize with my extreme examples. Disability has been eliminated from the discourse on health care reform or perhaps more accurately it is framed only as it pertains to "savings". That is disability is abnormality, costly, and must be reduced. To me, this is akin to targeting and eliminating what makes us so special and diverse. The advances in our medical industrial complex have created more diversity--I see people at adaptive sports programs that are amazingly unique. I marvel at the human spirit and adaptive ability we all possess. I am equally sad to know that physical and cognitive disability is stigmatized and there are times this knowledge makes me ashamed to be human.
Let me make one final point in this long and rambling post. I am not opposed to rationing health care. I can live with rationing health care but I can only do so if all are treated equally. Based on what I read and sense, we people with a disability are in for a very rough experience. Disability scholars may not have all the answers or even some of the answers but they must be part of the debate. The elderly, chronically ill, long term cancer survivors, people with a disability all have experience with our flawed health system and yet they are not sitting down to talk with President Obama or his advisors. This has me worried. People with first hand experience need to play a central role in any discussion about the medical industrial complex. I do not see this taking place and cannot help but conclude the so called health care reform in retrospect may seem like the biggest corporate grab for wealth our nation will ever witness. And who will get hurt the most? Why of course those that are the most vulnerable.
Tuesday, July 28, 2009
Jesus Christ, We're Screwed
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.
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.
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.
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