My good friend and colleague Stephen Kuusisto wrote a post at his always thought provoking blog Planet of the Blind today titled The Scary Milk Man. http://kuusisto.typepad.com/planet_of_the_blind/ My first thought when I read his post was when did I get old. There are no more milk men. Yes, I am old. I vividly recall the milk man came to our house at least twice a week. We even had a milk box outside our back door. The milk man drove a white truck and wore a short white coat. The milk came in glass bottles. I grew up drinking whole milk--none of the low fat stuff I see on super market shelves that passes for milk. The milk man sticks out in my mind for two reasons: first, our neighbor's dog loved to piss on the milk box. My parents would get so mad! Second, whole milk in bottles back then had a layer of fat on the top. I would ceaselessly argue with my sibling about who got the first pour from a bottle. As the youngest I think I always lost this battle. I recall being so mad a glob of milk fat was floating in my bowl of cereal.
Unlike me, Kuusisto's memories of the milk man are not so warm or Norman Rockwell like. Kuusisto writes that he was afraid of the milk man. He feared the milk man was a physician. I get this. Imagine yourself a young boy with little vision. A white apparition is at the door ready to take you away. I get this in part because my life changed on a Sunday morning when I was 9 years old. I was a typical kid until that fateful day. All I recall is pain, gut wrenching pain. Thunderbolts of lightening hot pain shot up and down my legs like the most violent electrical storm one could imagine. Think searing pain. Red hot lava running up and down your legs at warp speed. Each step I took was agony. I was a drive little kid though. I wanted to watch Go Speed Racer Go before church. I made it to the bottom of the steps. By the time I got that far I could no longer feel my legs or stand. All I could feel was pain. The sort of pain that makes one think death is preferable. I screamed out in agony for my folks. It was a blood curdling wail. I must have scared them to death. I cannot imagine what they thought. The idea I yelled out in such pain makes me shiver--as a parent I can think of nothing worse than see your child in pain. It was on this mundane long ago Sunday my life radically changed. The next ten years would be filled with hospitalizations that would last for months on end. Multiple surgeries followed. Medical stability came in the form of paralysis ten years later--just before I was about head off to college.
Memory, especially my childhood memories, are a strange collage of disjointed events. My memories are dominated by various hospitalizations. I vividly recall the good and bad of growing up with other morbidly sick children. Frankly, I am amazed I survived intact. For this, I have my parents, Arnold Gold, my pediatric neurologist, and the dedicated nurses and therapists to thank. While I suffered, and I mean I truly physically suffered, I was not damaged by the experience. Of course I recall the pain but at the same time I recall life changing events. For example, when I was 10 years old I recall looking out the window of Babies 11 in the Washington Heights area where the sickest of the sick kids were placed on a ward of 16. The big window in the center of the ward over looked the San Juan theater on Broadway. I remember in the winter watching poor homeless men walking in the theater desperate to get warm. I knew all I had assumed about life was wrong. Poor people existed. People lived on the street. Some of my peers on the ward told me about their dysfunctional lives. Some told me their parents had beat them. I met inner city back kids that had been shot. I felt their anger. It was a shock. I understood bias for the first time. I saw kids, very sick kids who would not celebrate their 18th birthday, abandoned by their parents. In looking back I would not trade what I experienced for all the money in the world. I was fundamentally changed for the better. I am who I am because of what I endured.
I have been thinking a lot about my experiences because I have been working on a long range project. For the last several months I have been tracking down the family members of the people Jack Kevorkian killed. Kevorkian has an unknown but impressive body count--about 130 people. I use the term body count in deference to Stephen Drake and Diane Coleman, founders of Not Dead Yet. I also prefer the term body count to victim or killed as it indicates Kevorkian became a cultural icon in the 1990s. The research I am doing is depressing. Kevorkian preyed on the weak and disenfranchised. Many people Kevorkian killed were women. Most of the people listed on Kevorkian's body count were not terminally ill. What I have found is the myriad of ways life can go wrong. This makes me wonder. Why did I not buckle from a decade of hospitalizations? How did my parents cope? How did they make me feel good about myself and at the same time care for my siblings? Why am I relatively free of psychological trauma? I think about this at night. Why did I live and others die?
The mind is a mysterious thing. I wrote I am relatively free of psychological trauma. One exception exists. If I am in an elevator and I see a button SB lit up I break out in a cold sweat and my heart races. The response is primal, a sensation I have absolutely no control over. This is deeply disturbing as a rush of terrible memories lights up in my brain--the sort of memories too terrible to detail, the darkest of places I wish I could forget. As a boy I learned if I was being transported to the SB level of the neurological institute I was in for misery. SB was akin to death and hell on earth. I was a brave kid. I sucked up the idea of suffering in silence. I was a good Catholic boy. I thought of Christ on the crucifix who suffered and died for our sins. I embraced American rugged individualism. I would be strong and silent. I reasoned I was tough. I wanted my parents to be proud of me. I could take it and more to the point what good would crying do? No one wants to be around a teary eyed kid. Maybe I reasoned if I took the pain in silence the painful test I had to endure would end quicker. I may have been a child but considered myself to be manly. The worse the pain felt the more silent and stoic I became.
Survival comes at a cost. For Kuusisto, he fears the milk man. I fear the SB button. We crippled people endure. Some of us swagger. Kuusisto swaggers as a poet. I swagger too. Apparently I am swaggering as a bioethicist these days for when I am introduced as a bioethicist I cringe. My identity is wrapped up in anthropology and disability based scholarship and activism. I am proud to be an anthropologist. I am not proud of bioethics. Bioethics has a checkered history, a disgraceful history if one considers what has been done in the best interests of the crippled. I do not want to be associated with scholars such as Peter Singer and Julian Savulescu who are the first many think of when the field of bioethics is mentioned. Yet here I am teaching bioethics and disability theory to honors students at Syracuse University. And truth be told I am loving every second of my teaching experience. So I wonder am I making a difference? Am I undermining the many wrong preconceived notions about disability? Can I, as flawed as any other scholar, make a difference? Will I be able to teach my student how to swagger and be empowered? Will my scholarship sway others? Can I undermine the utilitarianism of Peter Singer? Can I prevent a man like Jack Kevorkian from amassing a body count of disenfranchised people with a disability? Sorry, I know I am rambling. Kuusisto's post today has my brain firing on all cylinders.
Thursday, September 26, 2013
Saturday, September 21, 2013
A Little Saturday Morning Levity
I was up well before light today. In fact I was done with my tea and had cleaned the kitchen before there was any semblance of light. I would like to point out for those who are not morning people that I am a polite morning person. I am quiet as a church mouse. I regale in my alone time and every good idea I have ever had has popped into my brain before 8AM.
I tend to be a serious person. In fact my son thinks I am without humor--a Data like being. If you do not know who Data is look up the TV series Star Trek. So in an effort to be funny I suggest you watch the following spoof. It reminded me of the dreadful articles the NY Post published about fake service dogs.
I tend to be a serious person. In fact my son thinks I am without humor--a Data like being. If you do not know who Data is look up the TV series Star Trek. So in an effort to be funny I suggest you watch the following spoof. It reminded me of the dreadful articles the NY Post published about fake service dogs.
Tuesday, September 17, 2013
Stephen Hawking on Assisted Suicide
A documentary is going to be released about the life of Stephen Hawking. In an interview that I assume was designed to spark interest and publicity Hawking lends his support to assisted suicide. A brief clip of Hawking is being widely discussed on-line and in the media. Hawking is without question a cultural icon. He has appeared on Star Trek and the Simpsons. He wrote an international best seller, A Brief History of Time, and is often referred to as one of the smartest people in the world. I will freely admit I do not understand what he writes about. Black holes and the cosmos are well beyond my interests and ability. I tried to read A Brief History of Time. I never got past page 25.
I have paid close attention to what Hawking has to say about disability. In this regard, Hawking has little to offer. I find his social commentary about disability or anything else for that matter within the realm of the social sciences decidedly unimpressive. In the brief clip available Hawking supports the "right to die" but only if the person involved is part of the decision making process. Here is the quote the media will undoubtedly focus on:
The reference to "the case with me" refers to when he had pneumonia in 1985. He was put on a vent and recalls his wife could have turned off the "life support machine". It is pronouncements such as these that make me wonder just how much thought if any he has given to the social circumstances of people with a disability. Hawking is obviously a historic figure in theoretical physics. He is also the most widely recognized man in the world with a serious disability. As such, his words carry great weight. Sadly, his observations about disability and assisted suicide are in my estimation the words of a very privileged man who has led a privileged life. For decades he has lived the life of a greatly admired intellectual. His concerns and life are limited to the cosmos. Thus when he speaks about disability I often groan inwardly. Even a brilliant man has flaws. For instance he stated:
If one is disabled, one should concentrate on the things one can do and not regret the things one cannot do. In fact, my disability has been a help in a way, it has freed me from teaching or sitting on boring committees and given me more time to think and do research.Theoretical physics is one of the few fields in which being disabled is no handicap - it is all in the mind.
For Hawking, life is indeed all in the mind. I do not get a sense he has any contact or interest in other people with a disability. I do not think he has any interest in disability rights. This is of course beyond criticism. He can do whatever he likes with his life. The same can be sad for me. But when I read that his disability freed him from teaching or boring academic meetings I shake my head. Talk about being part of the Ivory Tower! Not many academics live in this rarified realm. I am equally sure he is very confident safe guards will protect people who might be pushed or encouraged to end their life. I do not share this optimism. I live in a world where disability based bias is rampant. I live in a world that remains largely inaccessible. I live in a world where health care providers express great angst about the cost of making facilities and private practices accessible. I live in a world of tight budgets and too often see the first line item cut pertains to equal access. At the age of 71, I have no hope Hawking will turn his superior intellect to the sort of real world worries other people with a disability occupy themselves with. In fact, when I watched the short clip of Hawking I recalled an anecdote I read about Dwight Eisenhower. When Eisenhower retired he realized he had not answered or picked up a phone in decades. Apparently generals and presidents do not answer the phone or make phone calls. Eisenhower was supposedly startled the first time he had to make a phone call on his own. He had forgotten what a dial tone sounded like and had to ask his wife for help. Hawking is a man of such privilege. When Hawking talks of the cosmos he is the man. When Hawking talks about disability or assisted suicide he is a mere mortal. As flawed as me and any other human.
I have paid close attention to what Hawking has to say about disability. In this regard, Hawking has little to offer. I find his social commentary about disability or anything else for that matter within the realm of the social sciences decidedly unimpressive. In the brief clip available Hawking supports the "right to die" but only if the person involved is part of the decision making process. Here is the quote the media will undoubtedly focus on:
"I think those who have a terminal illness and are in great pain should have the right to choose to end their lives, and those who help them should be free from prosecution... There must be safeguards that the person concerned genuinely wants to end their life and are not being pressurized into it or have it done without their knowledge and consent as would have been the case with me."
The reference to "the case with me" refers to when he had pneumonia in 1985. He was put on a vent and recalls his wife could have turned off the "life support machine". It is pronouncements such as these that make me wonder just how much thought if any he has given to the social circumstances of people with a disability. Hawking is obviously a historic figure in theoretical physics. He is also the most widely recognized man in the world with a serious disability. As such, his words carry great weight. Sadly, his observations about disability and assisted suicide are in my estimation the words of a very privileged man who has led a privileged life. For decades he has lived the life of a greatly admired intellectual. His concerns and life are limited to the cosmos. Thus when he speaks about disability I often groan inwardly. Even a brilliant man has flaws. For instance he stated:
If one is disabled, one should concentrate on the things one can do and not regret the things one cannot do. In fact, my disability has been a help in a way, it has freed me from teaching or sitting on boring committees and given me more time to think and do research.Theoretical physics is one of the few fields in which being disabled is no handicap - it is all in the mind.
For Hawking, life is indeed all in the mind. I do not get a sense he has any contact or interest in other people with a disability. I do not think he has any interest in disability rights. This is of course beyond criticism. He can do whatever he likes with his life. The same can be sad for me. But when I read that his disability freed him from teaching or boring academic meetings I shake my head. Talk about being part of the Ivory Tower! Not many academics live in this rarified realm. I am equally sure he is very confident safe guards will protect people who might be pushed or encouraged to end their life. I do not share this optimism. I live in a world where disability based bias is rampant. I live in a world that remains largely inaccessible. I live in a world where health care providers express great angst about the cost of making facilities and private practices accessible. I live in a world of tight budgets and too often see the first line item cut pertains to equal access. At the age of 71, I have no hope Hawking will turn his superior intellect to the sort of real world worries other people with a disability occupy themselves with. In fact, when I watched the short clip of Hawking I recalled an anecdote I read about Dwight Eisenhower. When Eisenhower retired he realized he had not answered or picked up a phone in decades. Apparently generals and presidents do not answer the phone or make phone calls. Eisenhower was supposedly startled the first time he had to make a phone call on his own. He had forgotten what a dial tone sounded like and had to ask his wife for help. Hawking is a man of such privilege. When Hawking talks of the cosmos he is the man. When Hawking talks about disability or assisted suicide he is a mere mortal. As flawed as me and any other human.
Monday, September 16, 2013
Barry Corbet: A Long Overdue Appreciation
I deeply admired Barry Corbet. His writing appealed to me for a variety of reasons. He published essays in an eclectic collection of magazines and was quick to grasp the importance of the internet. He always made astute observations but what really drew me in was the fact there was a subliminal fuck you attitude in his work. He was smart. He was an accomplished outdoorsman and athlete pre and post SCI. He had a healthy ego. He knew how to have fun. He had a distinguished career as a mountain climber. All this was on display for one that read his work carefully. His personality was imprinted on the pages of New Mobility during his tenure as editor. Speaking of which, in the most recent issue New Mobility has an article by Broughton Coburn. The article is based on a longer essay in Dartmouth Alumni Magazine. See: http://now.dartmouth.edu/2013/07/the-remarkable-life-and-uncommon-courage-of-barry-corbet-58/
By far my favorite article Barry Corbet wrote was published by the AARP. It concerned his admission to a nursing home after shoulder surgery. It was was chilling and insightful on par with Erving Goffman's classic text Asylums. What I vividly recall about the essay in question was the understated and insightful observations about institutional life. For example, I found this passage and was struck by its balanced observations:
For 35 years riding a wheelchair has been a distinguishing mark of my identity. In the group photos the wheelchair is what makes me easy to spot. Not here. Here my persona is preempted by all these stupendously old women—there are very few men in the long-term care sections—who create gridlock in the dining room and accidentally lock wheels passing one another in the halls. Practically everyone’s in a wheelchair, but I’m the only one not new to wheels. Wheelchairs are engines of liberation to me. They enable me to go where I want, when I want. This place reminds me why nondisabled people think they are tragic. In the custodial sections residents are propped up and seat-belted in their chairs, left with nothing to do but the impossible task of getting comfortable on old, unupholstered bones. Their heads hang down and they wait, their chairs no more than movable restraints.
Stillness. For a man of action and powerful intellect the stillness and lack of stimulation must have been soul crushing. Another article Barry Corbet wrote has been on my mind. Here I refer to "The Conquest of the Ordinary". See: http://barrycorbet.com/john-young-lecture.html This Thursday I will be giving a talk to medical students at UpState Medical School. I find these opportunities to speak to young men and women embarking on a medical career fascinating. My experience as a morbidly sick kid from 1969 to 1979 fits firmly within the realm of medical history. Obviously, revolutionary change in medical technology has taken place. There have been equally profound changes socially and practically. Rehabilitation today for people post SCI is short--mere weeks. Much time is spent on "recovery". In the olden days "recovery" was hard core and meant something radically different. What was instilled in us was an intense form independence. To ask for help was strictly forbidden. No one spoke about recovery. If the word was used it meant a well fitting wheelchair, the ability to do every transfer one could imagine, getting from the floor back into a wheelchair, driving, and every activity of daily living. Yes, much time was spent on ADLs. What I recall the most during rehab ws fear. I was 18 years old and hell bent on going to college. Denizens of rehabilitation were a strange mix of humanity. Older folks dominated most of whom had a stroke. I recall a paralyzed neurosurgeon who was in car wreck. He was a miserable and nasty man. I vividly recall a blackman my age who had been shot. He was smart and hardened. He wanted to be a drug dealer as soon as he was released. We had nothing in common and yet got a long and liked each other. I hated the way the old folks would fawn over me and say that my peer "was from a different culture". Never had I seen such obvious bigotry.
All of us in rehabilitation shared one thing: we worked hard. I suspect all of us were driven by fear. Old folks did not want to end up in a nursing home. I wanted to go to college. Our days were booked from early morning to early supper. Therapy was non stop. At the end of the day we were exhausted--bone weary. We had a lot of time to kill at night. And like many people under great stress we acted out. We drank a lot. We smoked pot. We took drugs--legal and illegal. We had sex (gasp). We pushed staff members to the limits both good and bad. Some staff member could not take us and quit. I get this. We were a rough crowd. Others fell in love and got married. It was all very primal and unique. The best way I can describe the social and physical environment was a mix of hard core neurological rehabilitation and research, a party hardy college campus, military boot camp, and the wards were akin to Animal House like fraternity.
Rehabilitation today is mechanized and isolated. Many rehabilitation centers are in lovely but remote areas. A system exists. People are streamlined through a shockingly brief stay. There is an utter lack of disability culture. In fact if a culture of disability exists it is the creation of cure junkies. This is not a bad thing but rather very different. What is missing is the lack of connection with the larger world of disability. Yes, guest speakers with a disability visit. But those invited are for instance parlympians. Again this is good but unrealistic. Newly minted crippled people are isolated and have no roll models. They are just not exposed to typical post SCI lives. They do not know a vibrant disability culture exists. They have no clue, none, disability rights and civil rights are one in the same. They have no idea about the history of disability or that the vibrant field of disability studies examines our past and present. This is sad. And thus Corbet's essay circa 2001 is remarkable more than a decade later. He wrote:
By far my favorite article Barry Corbet wrote was published by the AARP. It concerned his admission to a nursing home after shoulder surgery. It was was chilling and insightful on par with Erving Goffman's classic text Asylums. What I vividly recall about the essay in question was the understated and insightful observations about institutional life. For example, I found this passage and was struck by its balanced observations:
For 35 years riding a wheelchair has been a distinguishing mark of my identity. In the group photos the wheelchair is what makes me easy to spot. Not here. Here my persona is preempted by all these stupendously old women—there are very few men in the long-term care sections—who create gridlock in the dining room and accidentally lock wheels passing one another in the halls. Practically everyone’s in a wheelchair, but I’m the only one not new to wheels. Wheelchairs are engines of liberation to me. They enable me to go where I want, when I want. This place reminds me why nondisabled people think they are tragic. In the custodial sections residents are propped up and seat-belted in their chairs, left with nothing to do but the impossible task of getting comfortable on old, unupholstered bones. Their heads hang down and they wait, their chairs no more than movable restraints.
Stillness. For a man of action and powerful intellect the stillness and lack of stimulation must have been soul crushing. Another article Barry Corbet wrote has been on my mind. Here I refer to "The Conquest of the Ordinary". See: http://barrycorbet.com/john-young-lecture.html This Thursday I will be giving a talk to medical students at UpState Medical School. I find these opportunities to speak to young men and women embarking on a medical career fascinating. My experience as a morbidly sick kid from 1969 to 1979 fits firmly within the realm of medical history. Obviously, revolutionary change in medical technology has taken place. There have been equally profound changes socially and practically. Rehabilitation today for people post SCI is short--mere weeks. Much time is spent on "recovery". In the olden days "recovery" was hard core and meant something radically different. What was instilled in us was an intense form independence. To ask for help was strictly forbidden. No one spoke about recovery. If the word was used it meant a well fitting wheelchair, the ability to do every transfer one could imagine, getting from the floor back into a wheelchair, driving, and every activity of daily living. Yes, much time was spent on ADLs. What I recall the most during rehab ws fear. I was 18 years old and hell bent on going to college. Denizens of rehabilitation were a strange mix of humanity. Older folks dominated most of whom had a stroke. I recall a paralyzed neurosurgeon who was in car wreck. He was a miserable and nasty man. I vividly recall a blackman my age who had been shot. He was smart and hardened. He wanted to be a drug dealer as soon as he was released. We had nothing in common and yet got a long and liked each other. I hated the way the old folks would fawn over me and say that my peer "was from a different culture". Never had I seen such obvious bigotry.
All of us in rehabilitation shared one thing: we worked hard. I suspect all of us were driven by fear. Old folks did not want to end up in a nursing home. I wanted to go to college. Our days were booked from early morning to early supper. Therapy was non stop. At the end of the day we were exhausted--bone weary. We had a lot of time to kill at night. And like many people under great stress we acted out. We drank a lot. We smoked pot. We took drugs--legal and illegal. We had sex (gasp). We pushed staff members to the limits both good and bad. Some staff member could not take us and quit. I get this. We were a rough crowd. Others fell in love and got married. It was all very primal and unique. The best way I can describe the social and physical environment was a mix of hard core neurological rehabilitation and research, a party hardy college campus, military boot camp, and the wards were akin to Animal House like fraternity.
Rehabilitation today is mechanized and isolated. Many rehabilitation centers are in lovely but remote areas. A system exists. People are streamlined through a shockingly brief stay. There is an utter lack of disability culture. In fact if a culture of disability exists it is the creation of cure junkies. This is not a bad thing but rather very different. What is missing is the lack of connection with the larger world of disability. Yes, guest speakers with a disability visit. But those invited are for instance parlympians. Again this is good but unrealistic. Newly minted crippled people are isolated and have no roll models. They are just not exposed to typical post SCI lives. They do not know a vibrant disability culture exists. They have no clue, none, disability rights and civil rights are one in the same. They have no idea about the history of disability or that the vibrant field of disability studies examines our past and present. This is sad. And thus Corbet's essay circa 2001 is remarkable more than a decade later. He wrote:
We've patched together our lives after years of disability, and now we're patching together our culture after decades of fragmentation. We've reinvented ourselves personally, and now we're doing it collectively.We need your help. Newly injured people aren't being reborn into a vacuum; they need to know that. They won't want to belong at first -- you can't really argue that disability is just what they always wanted -- but that changes. Please -- direct your patients to our culture, make them aware of it.Teach us to fight our isolation. We need to maintain our connections. It's hard for a lot of us to travel to see friends. If we don't go to work every day, we don't see new people. Our working friends are usually free in the evening, but some of us can't socialize then: We fight chronic pain or we don't have transportation or we spend our evenings doing two-hour bowel programs.Teach us not to go gently. Teach us to fight the loss of every old friend and lover. To call, e-mail, write. To be available. Teach us to observe the occasions, to nourish the memories. A lifetime of relationships is one of life's best rewards; losing them is one of its worst mistakes. It's not always a simple matter to connect your patients to their culture, but there is one easy way.Expose them to the disability press.
The disability press today can be characterized in a variety of ways. It could be the collective blogs and websites produced by people with a disability. It could be disability studies departments nationwide. It could be adaptive sport programs located at many ski resorts. It could be Syracuse University Disability Culture Center. It could be independent living centers that dot the landscape. After reading many of Corbet's essays over the last few days combined with new job enthusiasm at Syracuse University I am energized. I get up well before dawn these days. I am writing a lot. I am socializing. I am advocating for disability inclusion at the ASBH. I am about to take on utilitarian philosophers in November when I talk at Yale University. I am enthused by my students in the honors program at Syracuse. In short, like Corbet I am drawn to disability culture. I just wish newly minted cripples knew about the world in which I navigate.
Thursday, September 12, 2013
Disability as Disaster
The video is entitled "From One Second to the Next". Texting and driving is dangerous. I tried it once and almost killed myself. I never attempted to text while driving again. I get the need for this sort of video. In fact it has been viewed over two million times. I assume it is widely shown in high-school and colleges across the nation. This age group are utterly dependent upon texting. I get this too. If I want to talk to my son I text him please answer the phone. So yes this video is very much needed.
The first personal story clearly fits into a badly dated disability as tragedy genre. I had hoped that after 40 years of progressive legislation designed to empower people with disabilities a video such as this one would be a thing of the past. Sadly though, the pity/trajedy model of disability still resonates. I do not feel sorry for the mother or her son X. In much the same way, I hope no one feels sorry for me. I surely wish her son never experienced a severe spinal cord injury. I can say the same about any person that damages their spinal cord. But accidents happen--horrible life changing accidents happen. I truly wish the young boy X was not paralyzed. I simply wish the story could have been framed differently. I cringed when I heard the mother state "his legs are gone, his wheelchair are his legs". I also cringed when she stated her son is "on life support" and she cannot tell her son "go in the yard and play".
At issue is how the story is told. It is designed to put the fear of God into the hearts of parents. It is designed to scare young people too. For what is the worst case scenario? A severe disability. What is the worst disability one could have? Living on "life support". This mother is absolutely correct about one thing: when it comes to disability "everything is a production". This both true and false. It is true that spontaniety is often impossible when one is disabled. The "production" in life for a person with a disability exists on a sliding scale. For a person such as myself who is independent the "production" process is minimal. It takes me longer to do mundane tasks and as most people with an injury comparable to mine this limits what can be accomplished in a given day. Everything being a production is false in most instances. People do not ask the all important why? When I am out and about the why figures into a social and physical environment designed for people who are bipedal. Wheelchair access is simply not valued. Ramps are often perceived as an eye sore and located in the back of buildings. Access often involves entering a remote and hard to find door. As a result, I have seen the worst parts of some of the best buildings in New York City. Elevators are often turned off. Wheelchair lifts are often used to store garbage. The list of violations are long. The root cause however is the same: access is not valued. This creates a destructive vortex. Businesses spend a great deal of money to make buildings accessible. This is not done by choice but to comply with the law. So when the wheelchair lift is not used or the accessible entrance in the back is rusted shut people get mad and think money was wasted. Again, no one asks the question why. Why is the lift or elevator not used? Well in my experience a locked elevator or locked wheelchair lift is a waste of money and useless.
Let me provide one example. The sandwich food chain Cosi is an access nightmare. The look they prefer involves tables at the entrance and a sandwich making station at a higher level up about four to eight stairs. In the Cosi stores I have been in often have a wheelchair lift. Great. Not so fast. In every Cosi store I have been in the wheelchair lift is locked. Only the manager has the key. Most stores use the lift as storage for either trash or surplus supplies. When I ask for the wheelchair lift to be cleared I instantly become a pain in the ass customer. I have even seen more than one wheelchair lift purposely rendered in operative by breaking the key in the off position.
The point I am trying to get at is that I wish this mother and her son well. But they need to rethink life and how they fit in it. Yes, everything is indeed a major production for this mom and her son. Life as a vent dependent quad is not easy. It is in reality hard and expensive. Some might say the same thing about me. People often comment about what a hassle it is for me to get my wheelchair in and out of my car. What choice do I have? None. And frankly I have never thought of this mundane activity as anything but, well, a mundane activity. It is not a blip on my radar. What is very much on my radar is the refusal of bipedal people to accommodate what the ADA deems "reasonable accommodations". This too is what I want this mother and her son to learn. The people who often determine what is and is not a reasonable accommodation know nothing about disability. To return to the example of the Cosi food chain, I am sure the corporation that required its stores to have a wheelchair lifts were meeting the letter of the law. I bet an executive may have even thought it is not just a legal requirement but the right thing to do. The failure here is not physical but rather social. No one values those wheelchair lifts. At a fundamental level this is deeply entrenched. Culturally we believe that a choice is involved as to when, where, and how much will be spent on making a building accessible. This is false. The law is very clear.
I find videos such as the one above counter productive. The take away message is not just texting and driving is dangerous. The message the mother effectively delivers is disability is inherently bad. Disability is a tragedy. I consider this message to be as deadly as text messaging while driving. Thus yet another opportunity was lost. This has been a recurring theme for decades and as a result social progress in terms of disability proceeds at a glacial pace.
Thursday, September 5, 2013
Nasty Comments Got Me Thinking
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.
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.
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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