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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.

3 comments:

Elizabeth McClung said...

I assume Reeve ran over your dog.

My friend with a C3 works out at one of the centers Reeve founded. The functional is now at a C5 level, enough for a hand cycle.

Did you know Reeve enough to attack him? Because you aren't listing quotes or his ideas, but something more personal, more in the gut. You don't LIKE how he was seen in media, and how perhaps that makes people look at you (but then you don't like people who ask for help either). First off, HE'S DEAD!!!!! GET OVER IT! Is his life worse off than yours? Yes. Living is the greatest revenge and you won - you can attack a dead person all you want, if that is what you want to use to define your view of 'good living'.

Reeve was as selfish as you were about having your sore healed. I guess that makes you 'obnoxious and selfish in the extreme' - he had a problem and worked toward sorting it. You did. Does that make you bad? Not to me, but then, Reeve was never evil to me. Hansen, who takes money from others in order to ONLY give to SCI and not to cancer or progressive spinal cord injuries, on that you are silent. Or that he takes money and builds.....a center for a spinal cord cure, again silent. Look at all this hating you could be getting on with.

I know your school, and have seen dozens of minds and spirits broken in it, I have seen hundreds who envison and hope for nothing, and have gotten just what they were trained for. It seemed sad, not part of a community, and too afraid of failing, too afraid of needing to risk asking for help to even think of trying. Sad Cripples.

I fear that any mono-focus, either yours or his, creates bad neighbors. And, yes, unless you have experienced a particular experience, do you have the right to overwrite it? (and when have medical 'experts' not usually trailed years if not decades behind those with the condition in understanding?) It is why I don't tell you that you are doing spinal cord injury the wrong way, or making bad choices, or whatever, because how can I know what your life is like, and what your limits are?

I fail to see, if you want a better world for those with SCI or disabilities, how this helps them, your focus of hating the dead. Let the dead bury the dead, and come back to those who are living.

william Peace said...

Elizabeth, My dislike for Reeve is personal. He lived less than a mile or two from my house. Our kids are about he same age. Our area is grossly inaccessible. He did nothing, not a thing to use his influence to make any change that would have benefited many. That is the personal background. Yes, he is dead but his legacy lives on. No winners or losers are involved. He wanted a cure to SCI, I want equality. These goals are not mutually exclusive. I have no idea what "school" I come from that has broken dozen of minds and spirits. Do civil rights break people's spirit? Is an effort that all people are equal and should share the same equal rights a mono focus? I do not hate the dead--here I assume you mean Reeve. Inequality and prejudice bother me. I fail to see how this makes me hateful.

DellyCartwright said...

This is incredible. Bless you. I am behind this 100%. I had no idea but now I will scream louder and fight harder. I have three children with disabilities.