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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.

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: 

"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: 

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: 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.