American society loves people with a disability that want to die. These people are heros. These people are lauded as brave. Their stories are gut wrenching. Their writing is powerful. The latest such person with a disability that is being belatedly embraced is Christina Symanski who I have already written about. Symanski died last December but few noticed her death outside of her immediate family and those in the disability community that read her blog Life Paralyzed. I was deeply touched by her writing and disturbed by her death. I have tried to give a balanced perspective on the social significance of her death. This is exactly what you will not find in the news stories that I have read over the last few days. The first newspaper to write about Symanski was the New Jersey Star Ledger. This story was picked up by the UK's Daily Mail and then the Huffington Post. I expect the news of Symanski's death will go viral over the weekend and be picked up by hundreds of news outlets. I have no doubt she will be lauded for choosing to die. Proponents of assisted suicide legislation will bemoan her heroic suffering--Symanski slowly dehydrated and starved herself to death over a period of two months. Comments from readers on line are predictable--if we can euthanize our pets with dignity why did Symanski have to suffer a horribly painful death. The news stories are maudlin in the extreme and devoid of any serious discussion. For example, the story in the local NJ paper adds details such as Symanski's last meal. The Huffington Post notes as an artist Symanski had decided she had suffered enough--the assumption being artists need to suffer to produce great art. The Daily Mail went into great detail about how Symanski was paralyzed and saved by her boyfriend who she was about to move in with.
None of what I read in the newspaper accounts of Symanski's life and death discussed a single important issue. In my estimation, they followed a standard formula when writing about disability. Disability is bad, very bad. Disability is a personal tragedy. Some people with a severe disability would prefer to die. This desire to die is a perfectly reasonable and rational response. People with a disability have the right (duty) to die. This formula is more pronounced and provides great visuals when a vivacious young woman such as Symanski is involved. Big before and after pictures are included in the news stories. Symanksi with a big beaming smile with her boyfriend juxtaposed against her alone post injury sitting in her wheelchair. The not so subtle message is life was awesome before paralysis and horrible afterwards. Too jaundiced a viewpoint perhaps? I think not. For instance, in the Daily Mail story the following quote by Symanski is produced in large bold print: "I couldn't handle the thought of sentencing Jimmy to the hell that had become my life. I wanted a better life than I could give him, for him. I loved him too much to be selfish. I had to let him go, even if it killed me, and that's exactly what it did".
What strikes me about Symanski is how decidedly unusual her reaction to paralysis was. In her blog she wrote that she was willing to wait five to ten years for a cure to spinal cord injury. After this period of time, she would reassess her situation. This line of reasoning is well outside of the norm and highlights the dangers of what I identified as the Reeve School of Paralysis in my last post. A period of depression after spinal cord injury is a common reaction--I will not deny a spinal cord injury can be devastating personally and physically. Believe me, I know. But virtually everyone, the vast majority, adapt and move on with life. Some do so with flair, others struggle. What strikes me is how anonymous we paralyzed people are, that is we who simply move on regardless of our level of paralysis. I know quadriplegics with a higher level of injury than Symanski. I know a physician who has a level of injury similar to mine. I know business men and adaptive athletes all of whom are paralyzed. You do not read about us. We are boring and defy conventional norms that sell newspapers. Ironically, we are the majority. According to the latest statistics, there are 1,275,000 people in the United States living with a spinal cord injury. More generally there are 5,596,000 people who report they live with some sort of paralysis due to other conditions such as stroke and Multiple Sclerosis. In 2010 I read about one person with a spinal cord injury that chose to die--Christina Symanski.
The fact is more people are living with a spinal cord injury than ever before. Virtually all those I meet say the same thing--paralysis is the least of their problems. Access to health insurance, employment, mass transportation and housing all pose significant barriers. The result is people living with paralysis have a significantly lower level of income. This is the sort of story I want to read about. Instead of reading about the abundance of needless barriers we paralyzed people are forced to deal with media outlets focus on Symanski. Her post injury life is perceived through a lens of suffering. And Symanski did indeed suffer. She experienced autonomic dysreflexia, a serious and dangerous problem for people with a high spinal cord injury. However, she was hardly alone--many people with her level of injury experience what she did. None of them chose to die. No story about Symanski addressed why she could not teach as she had before her injury. No story discussed why she was forced to live in an institution for a year. No story discussed how she escaped institutional life, a remarkable feat by itself. No story discussed whether her unconventional death was legal. No story discussed her art work as a means of developing a viable income. No story questioned why she and her boyfriend could not have lived happily ever after. Such a discussion and asking the hard questions I pose do not fit the script, the narrative of disability we thoughtlessly accept. So yes Symanski's death is a tragedy and I mourn for a woman I never met. I feel bad for her family and loved ones. My sorrow however is not on the life lived post injury but rather on the life she chose not to live. What bothers me the most was her refusal to adapt and her failure to connect with the vibrant disability community I have come to know and love. Life is a gift, a real blessing with or without a spinal cord injury. It bothers me to no end others cannot see what is so obvious to me.
Friday, February 17, 2012
Wednesday, February 15, 2012
The Reeve School of Paralysis
When Christopher Reeve was paralyzed in 1995 I grossly underestimated the impact he would have on the public perception of disability, especially spinal cord injury. For many years, I refused to criticize anything he said or did. I had much to complain about. Between 1995 and his death in 2004 Reeve was obnoxious and selfish in the extreme. His life revolved around one thing--cure for paralysis. The general public, mainstream media outlets and his Hollywood friends all hailed Reeve as a "hero". In sharp contrast, I kept thinking that in time he surely he will get it--it being the social implications of disability. Surely he would begin to advocate not just for a cure to spinal cord injury alone but social equality. Experience and exposure to other people with a disability I was convinced would help Reeve see the light. This never took place. Hence, by 2002 I could not be silent. I published a nasty article, "Wishing for Kryptonite", in Ragged Edge. I blasted Reeve and have not stopped blasting him. Reeve was an unmitigated disaster for disability rights and created what I call the Reeve School of paralysis. Simply put, the Reeve School of paralysis perceives disability to be a personal tragedy. A spinal cord injury is a personal catastrophe. Life is bifurcated. There were the golden years before paralysis when life was perfect and the tragic, compromised, and diminished life after a spinal cord injury. Reeve would "suffer" with dignity. He would show great courage in the face of a horrific tragedy. It helped that he was good looking and stoic. He played this part to perfection. But wait there is more! Reeve, thanks to his fame before his injury, became an icon. He was the perfect cripple. He was not like other paralyzed people who wallowed in self pity. He wanted to be cured. He dedicated his life to cure. He founded the Reeve Foundation. He lobbied on behalf of other paralyzed people. He embraced high tech medical care--care meaning research for a cure and emphasis on dubious clinical trials for cure. He became a cure junkie and for this he was beloved by all--all those that knew nothing about disability.
Reeve cemented an antiquated perception of disability. Disability is a fate worse than death. It is a singular experience, a tragic experience. The "job" for all people with a spinal cord injury is to seek a cure to paralysis. No risk is too great. No procedure too risky. No amount of money is too much. No matter what the focus is always on walking. High tech medicine is embraced even if it is shockingly expensive and impractical. Think the exoskeleton. Reeve also helped establish the idea that if we cannot be cured today then our paralyzed bodies must be maintained in good working order. This is a full time job unto itself. It can require a staff of people as Reeve had. But it requires total dedication. A family, job, and social life is of secondary importance. The fact this is an economic impossible for virtually every paralyzed person is never discussed or even mentioned.
In sharp contrast to the Reeve School of paralysis, I come from the old school of paralysis circa 1978. The school of paralysis I attended was hard. We did not talk or think about cure. Doctors were brutally honest. You will never walk again. There is nothing to be done. You are paralyzed and that is the beginning and the end of the story. Good luck and off to rehab you go. Rehab back then was hard core and extensive. It was a morbidly depressing environment. There were few if any pretty rehab centers. Rehab in 1978 was usually one floor in a critical care hospital. I was on the 8th floor of the Neurological Institute at Columbia Presbyterian Hospital. The floor was a pit and a testament to all that could go wrong with the human body. The only bright spot was the physical and occupational therapists. I could have a normal life paralyzed but I had to relearn everything. The therapists were all young and very pretty. This certainly helped me work hard. I wanted to impress them and get away from rehab as soon as humanly possible. I was driven and the therapists were serious task masters. I learned how to dress. I learned how to get my wheelchair in and out of the car. I learned how to pop over and up curbs. I learned how to take care of my skin. I learned how to make transfers of every sort. All this was mundane, boring and time consuming. It was exhausting physically and mentally. However, there was one relentless message sent--it was the core of rehab circa 1978. You must be as independent as humanly possible. Not spoken but implied was my diminished social status as a paralyzed person. Hence, the worst thing I could ever do was ask for help. Asking for help was tantamount to failure. If it took an hour to get dressed so be it. Asking for help was out of the question. If you ever ask for help you will make all people with a disability look bad. This independence was deeply ingrained. For decades I accepted this as gospel. I would rather die than ask for help. Help was an acknowledgment of weakness. If I asked for help I would be less than human, a disgrace to every other paralyzed person.
In looking back, this hard core approach to rehab was archetypically American. A celebration of independence taken to an extreme. The strange thing is it worked for a driven person such as myself. For others, it was too much. I did not think about the people who could not cope for a long time. I kept my head down and worked as hard as humanly possible. Fast forward 30 years and I am divorced and have a teenage son. On a lark my son and I went skiing at the invitation of my niece Maggie who, at the time, was an intern at Vermont Adaptive. That weekend was stunning. A veritable revolution had taken place in adaptive sports. The gear, sit skis in particular, were cool. It was obvious given time and effort I could ski. This technological revolution paled in comparison to the social revolution. I saw paralyzed people asking for help! Indeed, it was obvious that I would need help to be physically more active. This dichotomy was hard for me to wrap my brain around. Asking for help in my mind was inherently bad but skiing is fun and liberating. I have learned much skiing and later kayaking. What I have learned has less to do with adaptive sports than the profound way the social perception of paralysis has changed as well as how we approach spinal cord injury. I have come to reject both the rehab model I experienced circa 1978 and the Reeve School of paralysis as unhealthy extremes.
I have long believed we need a far more nuanced understanding of paralysis in particular and disability in general. Focusing on an extreme form of independence that I experienced is as counter productive as the Reeve School of paralysis. But how do we foster a more nuanced understanding of disability? I see no hope among newly paralyzed people. The rehab newly paralyzed people receive is austere at best. They are set up to fail. By fail, I mean they are inadequately trained in how to care for their bodies and quickly experience complications and are hospitalized again and again. The result is that they often perceive themselves to be singularly unusual. Divorced from the larger community of paralyzed people, especially old timers such as myself and disability rights activists, this an understandable reaction. It is also decidedly wrong. This is where I worry the most. The implications are deadly. For example, Chritina Symanski believed:
"Unless you've been in my shoes, I have a hard time absorbing any justifications, or reasonings as to why I MUST, or SHOULD continue to suffer. I'm not just referring to "quadriplegics" in general. I'm talking about women, with high level complete spinal cord injuries, that are in their thirties, that were injured in their twenties, that have no children, that lost a career, that have IBS, and that suffer from daily bouts of autonomic dysreflexia. If you are one of the few people on the planet that fit in that category, by all means, share your insight, and advice on coping with me.
If you don't belong in my boat, please save your judgement, and just take a moment to think what you might do in my situation, and how you might want to be treated... Imagine needing to ask someone for every need; from scratching an itch, to brushing your teeth, to tying your shoes. I can guarantee you, from experience, that your worst fantasies, would not do justice, to the reality of actually living this way. I have lived on both sides of the fence, both as an able bodied adult, and as a disabled adult. I know exactly what I'm missing out on, and how much better life could be."
If I followed Symanski's logic, no medical expert and the vast majority of paralyzed people could not comment or offer advice on how to cope. She was an island of despair unto herself. This enabled her to embrace her suffering and the misery of disability. She clearly fits within the Reeve School of disability. Worse yet, Symanski is lauded for her suffering. This is particularly convenient as it lets society off the hook. We do not allocate resources on the mundane like appropriate support services. Instead we laud the exoskeleton, search for a cure, and other dubious ventures that have no practical benefit. No one wants to discuss why young people with a spinal cord injury often end up in a nursing home. This does not fit the cultural script we have created. And here is where a nuanced understanding of disability is within our grasp. We need to develop and foster a positive approach to life after disability. we need a new script or narrative. I am not suggesting a "disabled and proud" approach as the activists posters proclaim. This does not resonate with people who have no experience with disability. We need to sell the sub basic fact that disability is a part of life. At some point in our life disability will touch our lives or the lives of our family members. Thus it is in all our best interests to insure homes, transportation, and the work place are accessible to all. By accessible I am not talking about architecture alone. I mean we accept disability is an inherent part of the human condition. For some it will have a profound impact on their life. For others it may be a transient state. But it an integral part of life, especially as we age.
Reeve cemented an antiquated perception of disability. Disability is a fate worse than death. It is a singular experience, a tragic experience. The "job" for all people with a spinal cord injury is to seek a cure to paralysis. No risk is too great. No procedure too risky. No amount of money is too much. No matter what the focus is always on walking. High tech medicine is embraced even if it is shockingly expensive and impractical. Think the exoskeleton. Reeve also helped establish the idea that if we cannot be cured today then our paralyzed bodies must be maintained in good working order. This is a full time job unto itself. It can require a staff of people as Reeve had. But it requires total dedication. A family, job, and social life is of secondary importance. The fact this is an economic impossible for virtually every paralyzed person is never discussed or even mentioned.
In sharp contrast to the Reeve School of paralysis, I come from the old school of paralysis circa 1978. The school of paralysis I attended was hard. We did not talk or think about cure. Doctors were brutally honest. You will never walk again. There is nothing to be done. You are paralyzed and that is the beginning and the end of the story. Good luck and off to rehab you go. Rehab back then was hard core and extensive. It was a morbidly depressing environment. There were few if any pretty rehab centers. Rehab in 1978 was usually one floor in a critical care hospital. I was on the 8th floor of the Neurological Institute at Columbia Presbyterian Hospital. The floor was a pit and a testament to all that could go wrong with the human body. The only bright spot was the physical and occupational therapists. I could have a normal life paralyzed but I had to relearn everything. The therapists were all young and very pretty. This certainly helped me work hard. I wanted to impress them and get away from rehab as soon as humanly possible. I was driven and the therapists were serious task masters. I learned how to dress. I learned how to get my wheelchair in and out of the car. I learned how to pop over and up curbs. I learned how to take care of my skin. I learned how to make transfers of every sort. All this was mundane, boring and time consuming. It was exhausting physically and mentally. However, there was one relentless message sent--it was the core of rehab circa 1978. You must be as independent as humanly possible. Not spoken but implied was my diminished social status as a paralyzed person. Hence, the worst thing I could ever do was ask for help. Asking for help was tantamount to failure. If it took an hour to get dressed so be it. Asking for help was out of the question. If you ever ask for help you will make all people with a disability look bad. This independence was deeply ingrained. For decades I accepted this as gospel. I would rather die than ask for help. Help was an acknowledgment of weakness. If I asked for help I would be less than human, a disgrace to every other paralyzed person.
In looking back, this hard core approach to rehab was archetypically American. A celebration of independence taken to an extreme. The strange thing is it worked for a driven person such as myself. For others, it was too much. I did not think about the people who could not cope for a long time. I kept my head down and worked as hard as humanly possible. Fast forward 30 years and I am divorced and have a teenage son. On a lark my son and I went skiing at the invitation of my niece Maggie who, at the time, was an intern at Vermont Adaptive. That weekend was stunning. A veritable revolution had taken place in adaptive sports. The gear, sit skis in particular, were cool. It was obvious given time and effort I could ski. This technological revolution paled in comparison to the social revolution. I saw paralyzed people asking for help! Indeed, it was obvious that I would need help to be physically more active. This dichotomy was hard for me to wrap my brain around. Asking for help in my mind was inherently bad but skiing is fun and liberating. I have learned much skiing and later kayaking. What I have learned has less to do with adaptive sports than the profound way the social perception of paralysis has changed as well as how we approach spinal cord injury. I have come to reject both the rehab model I experienced circa 1978 and the Reeve School of paralysis as unhealthy extremes.
I have long believed we need a far more nuanced understanding of paralysis in particular and disability in general. Focusing on an extreme form of independence that I experienced is as counter productive as the Reeve School of paralysis. But how do we foster a more nuanced understanding of disability? I see no hope among newly paralyzed people. The rehab newly paralyzed people receive is austere at best. They are set up to fail. By fail, I mean they are inadequately trained in how to care for their bodies and quickly experience complications and are hospitalized again and again. The result is that they often perceive themselves to be singularly unusual. Divorced from the larger community of paralyzed people, especially old timers such as myself and disability rights activists, this an understandable reaction. It is also decidedly wrong. This is where I worry the most. The implications are deadly. For example, Chritina Symanski believed:
"Unless you've been in my shoes, I have a hard time absorbing any justifications, or reasonings as to why I MUST, or SHOULD continue to suffer. I'm not just referring to "quadriplegics" in general. I'm talking about women, with high level complete spinal cord injuries, that are in their thirties, that were injured in their twenties, that have no children, that lost a career, that have IBS, and that suffer from daily bouts of autonomic dysreflexia. If you are one of the few people on the planet that fit in that category, by all means, share your insight, and advice on coping with me.
If you don't belong in my boat, please save your judgement, and just take a moment to think what you might do in my situation, and how you might want to be treated... Imagine needing to ask someone for every need; from scratching an itch, to brushing your teeth, to tying your shoes. I can guarantee you, from experience, that your worst fantasies, would not do justice, to the reality of actually living this way. I have lived on both sides of the fence, both as an able bodied adult, and as a disabled adult. I know exactly what I'm missing out on, and how much better life could be."
If I followed Symanski's logic, no medical expert and the vast majority of paralyzed people could not comment or offer advice on how to cope. She was an island of despair unto herself. This enabled her to embrace her suffering and the misery of disability. She clearly fits within the Reeve School of disability. Worse yet, Symanski is lauded for her suffering. This is particularly convenient as it lets society off the hook. We do not allocate resources on the mundane like appropriate support services. Instead we laud the exoskeleton, search for a cure, and other dubious ventures that have no practical benefit. No one wants to discuss why young people with a spinal cord injury often end up in a nursing home. This does not fit the cultural script we have created. And here is where a nuanced understanding of disability is within our grasp. We need to develop and foster a positive approach to life after disability. we need a new script or narrative. I am not suggesting a "disabled and proud" approach as the activists posters proclaim. This does not resonate with people who have no experience with disability. We need to sell the sub basic fact that disability is a part of life. At some point in our life disability will touch our lives or the lives of our family members. Thus it is in all our best interests to insure homes, transportation, and the work place are accessible to all. By accessible I am not talking about architecture alone. I mean we accept disability is an inherent part of the human condition. For some it will have a profound impact on their life. For others it may be a transient state. But it an integral part of life, especially as we age.
Monday, February 13, 2012
Skiing Again!
I am in Vermont and skiing. I have skied three times. Day one was great. Day two a bust. Day three awesome. This is the very last aspect of my life to be reclaimed since my wound healed. I am not happy, I am thrilled. I am also in bad shape. My conditioning is not good. I cannot ski all day yet. I made five runs today. I got better each time. My speed increased, I was linking turns well and gained a huge amount of confidence. Will ski tomorrow morning and head home. I am also teaching at Purchase College. I truly enjoy teaching there. The students are smart and appreciate the value of an education. I am adjusting to the evening class that ends at 9:50pm. And yes I hold them to 9:50pm or darn close.
Been thinking of a new post while I am driving to and from Vermont. I think well when driving. For some time I have been feeling divorced from newly paralyzed people. They don't seem to get it. It meaninig equality. Some newly paralyzed people think they are unique unto themselves. Zero thought is given to where ramps and elevators came from or that there was and is a civil rights battle to be waged. I get this, it takes time to get up to speed and learn how to adapt to a paralyzed body and the social implications of wheelchair use. What I do not get is the unique sentiment. I refer to this as the Reeve school of paralysis. There is an unwillingness to accept paralysis and move on with life. Part of this is the fact the cure industry has its hooks into the rehabilitatioin n business. Not sure where blame lies but I perceive newly minted paralyzed people as set up to fail. There is far too much hand holding. I do not advocate stepping back in time where the mentality was sink or swim. Too many sank and were never heard from again. What strikes me is that we paralyzed people are not unique. We share common social, economic, and political barriers. Yes, no two people are paralyzed the same way. But paralysis is the least of problems. We old timers get this, especially those active in the struggle forequal rights. And here is where being unique hurts us. We are divided and easily oppressed. We must be united politically. We must be hard assessing. We must assert ourselves and advocate for all people with disabilities. This philosophy is the antithesis of the most wellknown paralyzed person in recent memory, Christopher Reeve. More on this in my next post.
Been thinking of a new post while I am driving to and from Vermont. I think well when driving. For some time I have been feeling divorced from newly paralyzed people. They don't seem to get it. It meaninig equality. Some newly paralyzed people think they are unique unto themselves. Zero thought is given to where ramps and elevators came from or that there was and is a civil rights battle to be waged. I get this, it takes time to get up to speed and learn how to adapt to a paralyzed body and the social implications of wheelchair use. What I do not get is the unique sentiment. I refer to this as the Reeve school of paralysis. There is an unwillingness to accept paralysis and move on with life. Part of this is the fact the cure industry has its hooks into the rehabilitatioin n business. Not sure where blame lies but I perceive newly minted paralyzed people as set up to fail. There is far too much hand holding. I do not advocate stepping back in time where the mentality was sink or swim. Too many sank and were never heard from again. What strikes me is that we paralyzed people are not unique. We share common social, economic, and political barriers. Yes, no two people are paralyzed the same way. But paralysis is the least of problems. We old timers get this, especially those active in the struggle forequal rights. And here is where being unique hurts us. We are divided and easily oppressed. We must be united politically. We must be hard assessing. We must assert ourselves and advocate for all people with disabilities. This philosophy is the antithesis of the most wellknown paralyzed person in recent memory, Christopher Reeve. More on this in my next post.
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