Since I began writing this blog certain topics have generated extended and extremely negative feedback from readers. Topics that are sure to prompt negative responses, tirades really often laced with profanity, include any mention of "inspiration porn". I no longer use this term and consider its impact akin to using the word Eugenics with an academic. The mere use of the term Eugenics or "inspiration porn" negate any sort of constructive dialogue. Two other topics include the cure industry and assisted suicide. I find this quite frustrating and enlightening at the same time. Like any other human being, I do not like to be called an asshole, bitter, or a fucking idiot. However such replies are helpful in understanding the larger social significance of disability. The same can be said when I read tabloids such as the New York Post and other mainstream media rags that knowingly or unknowingly denigrate disability rights. I know the majority of Americans have limited if any experience with disability. What little knowledge people do possess is often wrong and firmly rooted in the medical or charity model of disability. Add in the fact I work with other academics and on university campuses and my social interactions are skewed. Skewed in the sense I work in an environment that frees me from the basest forms of disability based bigotry. Given this, the tirades I receive remind me of my lowly social status.
The moniker bad cripple is apt. Some people take the time to let me exactly how rotten I am. I let the nasty comments I receive stand because I feel they are a good indication of what most people really think about disability but in routine social interaction are unwilling to state. In recent months I have gotten a lot of severely critical email regarding my post about Shane Burcaw. I took this young man, a university student, to task. I objected to his overly simplistic message about being happy as well as his willingness to use of "inspiration porn". I was also not impressed with his efforts to get on the Ellen show. My post has generated many angry replies. The last two comments were as follows:
I just finished watching Shane Burcaw's video on youtube and I decided to look him up and see how his "Laugh at My Nightmare" program was going and I found this; a blog about how much a few people dislike this young man for being happy. What the literal fuck is wrong with all of you. Who the hell are you to judge this person, someone who was born with a life threatening disability, on being fucking happy and sharing his view on life. This so called "inspiration porn" is probably the biggest load of bullshit I have ever heard. Now I'm not a blogger or anything; in fact I created this account just to say how fucking disgusted I am by this shit. You should all be ashamed of yourselves . And to everyone, including the piece of shit author of this, who left any kind of negative comment towards this young man and his fucking happiness, I sincerely hope you have to somehow live through the same hell he is. I want all of you to feel the pain he feels.
Today's comment:
Most likely you will delete this comment based on the unparalleled amount of self righteousness exuded in this pathetic article, but wow if I've ever read a more bitter sounding, hate filled, twisted perspective article in my entire life. You should be ashamed. The kid is clearly going in the direction he was meant to go. He is not faking a sense of humor. He has it and used it to cope with everyday life the same way you seem to cry behind your key board about someone else's happiness that you can't achieve. For self loathing maybe? Here's an idea make a youtube video and advise all the cripples to be self loathing cry babies. Maybe that will work better.
The comment left today prompted me to write. These two diatribes accusing me of being: "self righteous", full of "bull shit", and a "piece of shit author". I should also be "ashamed" of myself as I am a "self loathing cry baby".
While the language leaves much to be desired I do not think the views expressed are far from the norm. Disability is grossly misunderstood. Much of what has been taught in secondary schools is badly antiquated. The fact is the vast majority of the population firmly believes disability is a medical problem. A few may be aware that people with a disability have been discriminated against but that problem was solved a long time ago with a law that insures all new buildings are accessible. At no point does civil rights enter the equation. People with a disability it is thought are "suffering". The few plucky cripples such as Burcaw are inspiring because in spite of the "nightmare"that is his life he is happy. The point here is the symbolism associated with disability is inherently negative or ridiculously positive. Thus two extremes exists culturally. Burcaw is an inspiring figure for happily overcoming his disability. I am the exact opposite. I am bitter and mad at the world. My anger stems from my disability, paralysis, and my disability alone. Any nuance is utterly absent. One is either a hero (Burcaw) or the anti-Christ (yes I have been declared the anti Christ).
When I read the nasty comments I shake my head in wonder. I truly wish to connect with a wide audience curious about disability. I try as best I can to frame disability in a way that will foster the proverbial light bulb to come on. People with a disability that I know are quite content with their given physical deficit. For me paralysis is a non factor in my life. I adapted long ago and will continue to adapt as I age. What is at issue is the social response to my existence. We live in a country with rampant unemployment--70% of people with a disability are unemployed. Mass transportation is often difficult or impossible to access. Housing is deeply problematic. When I move I operate on the assumption 95% of homes and buildings are not accessible. My choices are severely limited in terms of where I can live and how I can get to work. My anger and frustration does not stem from paralysis but rather a society that is knowingly reluctant to make the most basic so called reasonable accommodations. This is the leap in logic the majority of Americans have failed to make: disability is not about a given physical deficit. disability is about social, economic, and political exclusion.
I the discussions that concern disability to be inherently biased. In my experience there is always the proverbial but. That little word, but, is the bane of my existence. The proverbial but has existed for as long as the ADA has existed. Go to any meeting nationwide, think grass roots, and the proverbial but will come up at some point. For example, let me create a school budget meeting. In attendance are the usual suspects: PTA president, principal, board of education members, a lawyer etc. At some point during this endless meeting held in the evening after a long day of work the subject of transportation comes up. The district has a single wheelchair accessible bus. It is referred to as the special bus and likely transports every student in the district to and from school as well as to a host of school trips. The contract the entire bus fleet is coming to an end. Two companies are being considered. The existing company is cheaper than the competing company. There is one primary difference between the two bus companies aside from cost. The competing company is new and has made a commitment to include more than one short accessible or "special" bus. It has instead, via a grant from the Federal Government, included a wheelchair lift to 10% of all its big yellow school buses. The director of transportation states the new company would be able to transport all students with a disability on the big yellow school bus if they desired. The new accessible buses would require a change to the bus schedule. After this short recitation there will be dead silence. All will agree access is important. All will agree every effort should be made to be as inclusive as possible to students with a disability. Access is the right thing to do. And yes here comes that dangerous word, but. But the new company is more costly. They have a limited track record and are an unknown entity. The budget is tight. Then someone will ask well how many students with a disability do we transport? The number is very small. This makes no sense. we must spend our money wisely. Another person will state changing the bus schedule will prompt a hail of protests. Many heads nod in agreement. The lawyer will state the school is in compliance with the ADA and in the event a student or parent complains we can provide them with cab voucher. Yet another person will chime in that they know a student that broke his leg and that is what his parents insisted upon. The transportation director will state how much was spent on such vouchers. Before you know it one and all agree cab vouchers are a reasonable accommodation and that the district should remain with the existing bus company. All participants go home thinking they fulfilled their civic responsibility.
What is not stated in the meeting? The use of a single small bus, a "special bus" is a form of segregation. Students in the district have been taught a lesson. Segregation of people with a disability is the norm. Students with a disability have no right to be on the big yellow bus. Worse, the kids call the short bus the "retard bus". Kids are smart and they have learned their lesson. Their peers with a disability do not have the same rights as they do. They can be relegated to the "retard bus" and excluded. No person mentions the fact the kids with a disability are quickly and efficiently prevented from participating in routine social interaction. Typical kids grow up and become adults that simply accept people with a disability are different and do not have the same civil rights. That is typical people get to choose when and where they will spend money on disability inclusion. The ADA becomes a choice--we will comply when it is not too expensive or problematic. In part this is why people feel free to take me to task on firmly linking disability rights with civil rights. If this linkage was accepted, one the federal government instituted twenty-three years ago, opposition to disability inclusion would be objectionable. In failing to perceive disability as a civil rights issue all sorts of abuses both physical and social can be excused. Disability many think is solely about physical suffering. The nasty comments quoted above clearly demonstrate this. Burcaw has accepted his suffering with grace and dignity. I am a bad guy because I refuse to accept my lot in life--subservient cripple happy for society's largesse. In fact I am "biting the hand that feeds me"--those generous souls who donate money to the handicapped. Thus I am a bitter asshole. What I find frustrating in the extreme is how to undermine this line of reasoning. The anger I prompted is devoid of reason. How exactly can I get people to think? Suggestions welcome.
Thursday, September 5, 2013
Sunday, September 1, 2013
Bioethics and American Society Has Lost It's Way
I have spent much of the weekend reading Tom Koch's book Thieves of Virtue. Koch is about as cranky a scholar as humanly possible. His crankiness holds great appeal to me. I am after all a bit on the cranky side myself--not much of a shock given my moniker is bad cripple. While I am by no means an insider when it comes to bioethics, I suspect when Koch shows up at an academic conference and speaks I bet there are some scholars that likely inwardly groan. By itself, this makes me like Koch as I find the formulaic politeness many bioethicists practice unsettling. Koch's crankiness is evident on every page of his new book. I get why Koch is cranky. In fact he has every right to be.
There are passages in Koch's book I find remarkable and thought provoking. For instance, the Introduction begins with the following: Bioethics was supposed to be about you and me, about people and the medicine they receive, or desire. It was to be a tool with which individuals and the societies they inhabit could answer questions of medical practice and the research that sometimes puts those politely called human subjects at risk... it was to be a public service that brought a specific kind of analytic, moral philosophy to questions of medical care and delivery... The result would be, its progenitors promised, a set of generally applicable, universally accepted ethical guidelines at once intellectually and morally robust. The realities of patient care and treatment (or nontreatment) were the medium of that experiment... Medicine is about how to do things; bioethics was forged to decide whether we should do them and if so, when and to whom. Well that plan did not work out as expected. And I will put it even more bluntly than Koch--bioethics has been hijacked. Like Koch, I am disillusioned in that somewhere between the 1960s and the present bioethics began to consider medical care to be a commodity. Our health care system many bioethicists correctly state does not have infinite resources. Here is where bioethics goes off the rails. Medical care is expensive and its practice cannot be based on human compassion but rather on economic efficiency. Koch calls this "life boat ethics. Scarcity is a given requiring ethical triage. In this door enters scholars such as Peter Singer and a parade of utilitarian philosophers.
Way back when I went through the medical mill (1969 to 1978) I cannot recall a single person bemoaning the cost of health care. Of course I am looking back through the eyes of a young boy so my statement must be taken with a grain of salt. Yet even as a boy I was acutely aware of the fact I was morbidly ill. Pediatric neurology as a field was established a mere two years before I showed obvious signs of profound neurological deficits. There was not much to be done. Modern imaging and diagnostic testing did not exist. In the absence of modern technology we take for granted I would speculate I was among the last generation of people (patients) who were shown great compassion. Compassion still exists (or I hope it does) but things are different. Technology, expensive technology, rules medical care. I am not at all sure how progress is perceived now. Likely it is the introduction of some sort of new technological gadget that improves a profit margin. Do not get me wrong--cool gadgets such the wound vacuum and air fluidized beds, ultra light wheelchairs, etc are nothing short of awesome. I am a direct beneficiary. But as any anthropologist will tell you there is always a down side to technological innovation. This is where I think bioethics has failed spectacularly. A history lesson is needed.
Between 1951 and 1953 polio pandemics swept the world. Parents of young children were terrified of the disease. In one year amore than 60,0000 people contracted polio in the United States alone. Our health care and social systems were mobilized to care for those that got polio. School gyms were turned into wards. Negative pressure ventilation machines, iron lungs, were invented. These machines were considered a great advance in health care. Everyone knew the iron lung was not a cure to polio. Everyone knew the iron lung would not return a person that had polio to normal. Everyone knew people with polio might need life long care. Hospitals and rehabilitation centers for crippled children sprung up in every corner of America the most famous of which was Warm Springs. Koch insightfully observed:
Nobody asked about the cost of new technologies that permitted patient survival. No one warned that the continuing care and rehabilitation for those left with withered limbs would be economically unsustainable. Nobody suggested that the folks saved by these extraordinary interventions would be a social burden whose public cost of care could never be recovered. Nor did anyone whisper that the long-term severity of even the best-anticipated outcomes would leave the afflicted with a quality of life so intolerable that... they would be better off dead. Medical and social ethics demanded society and its physicians do all that was possible to save and, after saving to help rehabilitate polio's fragile survivors... Cost was not an issue because to not spend the monies, to not save the poliomyelitis patient, was unthinkable.
Wow. Unthinkable. To not do our level best to care and rehabilitate the ill, ill in larger numbers, was unthinkable. Money was not a consideration. Insurance companies did not dictate care. This line of logic no longer exists. We do the unthinkable every day. We discharge patients from hospitals as quickly as humanly possible. The men and women charged to do this are called hospitalists who are ethically compromised. They answer not to the patient but the institution where they work. For those seriously ill and in need of rehabilitation had better recover quickly as a few weeks of rehabilitation is the best one can hope for. The elderly who have a stroke have mere weeks to recover and then are sent to a nursing home. A young person who experiences a traumatic spinal cord injury gets a few weeks of rehabilitation and are then sent to live with their parents or a nursing home. To me, these scenarios that play out every day and coast to coast are unthinkable. To me, this is a social failure that costs the lives of a multitude of vulnerable people. People very much like me.
I find it ethically unacceptable that the traditional goals of medical care (medical care in the best interests of the patient) has been abandoned. In its place we as a society have embraced a faustian bargain in the form of socially acceptable utilitarianism. Again, enter Peter Singer and insurance company bean counters. Grandma is dying, what difference does a few weeks make? The amount we could spend on her care is better spent paying her grandchildren's tuition bills. A man experiences an upper level SCI rendering him a quadriplegic--who wants to live a life like that? Let's let nature take its course. A woman gets a prenatal diagnosis of Down Syndrome and at the same time is given a date to terminate her pregnancy. Is this a choice? I think not. I surely know what is wrong with our health care system but I have no idea how to fix the problem. Koch's final chapter offers a way to proceed via complex ethics and presents some interesting alternatives. I have no idea if Koch's forward thinking final chapter is a way out of the unacceptable situation our nation is in when it comes to health care. Perhaps the Affordable Health Care is a step in the right direction. I do know the ACA can not in the long term make how we deliver health care any worse than it is today. Maybe I am perfect for the field of bioethics. I have just written a post and failed to present a single possible solution. Now this thought bothers me and believe me it does.
There are passages in Koch's book I find remarkable and thought provoking. For instance, the Introduction begins with the following: Bioethics was supposed to be about you and me, about people and the medicine they receive, or desire. It was to be a tool with which individuals and the societies they inhabit could answer questions of medical practice and the research that sometimes puts those politely called human subjects at risk... it was to be a public service that brought a specific kind of analytic, moral philosophy to questions of medical care and delivery... The result would be, its progenitors promised, a set of generally applicable, universally accepted ethical guidelines at once intellectually and morally robust. The realities of patient care and treatment (or nontreatment) were the medium of that experiment... Medicine is about how to do things; bioethics was forged to decide whether we should do them and if so, when and to whom. Well that plan did not work out as expected. And I will put it even more bluntly than Koch--bioethics has been hijacked. Like Koch, I am disillusioned in that somewhere between the 1960s and the present bioethics began to consider medical care to be a commodity. Our health care system many bioethicists correctly state does not have infinite resources. Here is where bioethics goes off the rails. Medical care is expensive and its practice cannot be based on human compassion but rather on economic efficiency. Koch calls this "life boat ethics. Scarcity is a given requiring ethical triage. In this door enters scholars such as Peter Singer and a parade of utilitarian philosophers.
Way back when I went through the medical mill (1969 to 1978) I cannot recall a single person bemoaning the cost of health care. Of course I am looking back through the eyes of a young boy so my statement must be taken with a grain of salt. Yet even as a boy I was acutely aware of the fact I was morbidly ill. Pediatric neurology as a field was established a mere two years before I showed obvious signs of profound neurological deficits. There was not much to be done. Modern imaging and diagnostic testing did not exist. In the absence of modern technology we take for granted I would speculate I was among the last generation of people (patients) who were shown great compassion. Compassion still exists (or I hope it does) but things are different. Technology, expensive technology, rules medical care. I am not at all sure how progress is perceived now. Likely it is the introduction of some sort of new technological gadget that improves a profit margin. Do not get me wrong--cool gadgets such the wound vacuum and air fluidized beds, ultra light wheelchairs, etc are nothing short of awesome. I am a direct beneficiary. But as any anthropologist will tell you there is always a down side to technological innovation. This is where I think bioethics has failed spectacularly. A history lesson is needed.
Between 1951 and 1953 polio pandemics swept the world. Parents of young children were terrified of the disease. In one year amore than 60,0000 people contracted polio in the United States alone. Our health care and social systems were mobilized to care for those that got polio. School gyms were turned into wards. Negative pressure ventilation machines, iron lungs, were invented. These machines were considered a great advance in health care. Everyone knew the iron lung was not a cure to polio. Everyone knew the iron lung would not return a person that had polio to normal. Everyone knew people with polio might need life long care. Hospitals and rehabilitation centers for crippled children sprung up in every corner of America the most famous of which was Warm Springs. Koch insightfully observed:
Nobody asked about the cost of new technologies that permitted patient survival. No one warned that the continuing care and rehabilitation for those left with withered limbs would be economically unsustainable. Nobody suggested that the folks saved by these extraordinary interventions would be a social burden whose public cost of care could never be recovered. Nor did anyone whisper that the long-term severity of even the best-anticipated outcomes would leave the afflicted with a quality of life so intolerable that... they would be better off dead. Medical and social ethics demanded society and its physicians do all that was possible to save and, after saving to help rehabilitate polio's fragile survivors... Cost was not an issue because to not spend the monies, to not save the poliomyelitis patient, was unthinkable.
Wow. Unthinkable. To not do our level best to care and rehabilitate the ill, ill in larger numbers, was unthinkable. Money was not a consideration. Insurance companies did not dictate care. This line of logic no longer exists. We do the unthinkable every day. We discharge patients from hospitals as quickly as humanly possible. The men and women charged to do this are called hospitalists who are ethically compromised. They answer not to the patient but the institution where they work. For those seriously ill and in need of rehabilitation had better recover quickly as a few weeks of rehabilitation is the best one can hope for. The elderly who have a stroke have mere weeks to recover and then are sent to a nursing home. A young person who experiences a traumatic spinal cord injury gets a few weeks of rehabilitation and are then sent to live with their parents or a nursing home. To me, these scenarios that play out every day and coast to coast are unthinkable. To me, this is a social failure that costs the lives of a multitude of vulnerable people. People very much like me.
I find it ethically unacceptable that the traditional goals of medical care (medical care in the best interests of the patient) has been abandoned. In its place we as a society have embraced a faustian bargain in the form of socially acceptable utilitarianism. Again, enter Peter Singer and insurance company bean counters. Grandma is dying, what difference does a few weeks make? The amount we could spend on her care is better spent paying her grandchildren's tuition bills. A man experiences an upper level SCI rendering him a quadriplegic--who wants to live a life like that? Let's let nature take its course. A woman gets a prenatal diagnosis of Down Syndrome and at the same time is given a date to terminate her pregnancy. Is this a choice? I think not. I surely know what is wrong with our health care system but I have no idea how to fix the problem. Koch's final chapter offers a way to proceed via complex ethics and presents some interesting alternatives. I have no idea if Koch's forward thinking final chapter is a way out of the unacceptable situation our nation is in when it comes to health care. Perhaps the Affordable Health Care is a step in the right direction. I do know the ACA can not in the long term make how we deliver health care any worse than it is today. Maybe I am perfect for the field of bioethics. I have just written a post and failed to present a single possible solution. Now this thought bothers me and believe me it does.
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