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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: 


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. 

4 comments:

Jisun Lee said...

William, where do you see the voice of parents and loved ones in disability culture? I struggle with this as a parent who writes about her child. I am fully aware that I cannot speak on his behalf, not only because he is too young but also because I will never walk in his shoes when it comes to disability. It feels important for me to advocate and attempt to shift the conversation that I see around me, I also struggle with whether that is my place or not. I am also keenly aware of the criticism placed on parent advocates and bloggers and think that much of it is valid. What are your thoughts on where parents should be in the disability community?

william Peace said...

Jisun Lee, You have asked a critically important question r.e. your place as a parent in disability culture. First, if you believe a disability culture exists you have taken a huge leap the many have failed to make (and that includes some parents of kids with a disability). Second, you struggle to find your place in disability culture because there is a divide between people with a disability and parents who care for a child with a disability. Sadly, these two groups, both dedicated to disability culture and disability rights, often clash. I bemoan this. It bothers me and much to my deep regret have hurt the feelings of parents who have a child with a disability. Yet, I have no idea how to unite people that in theory should be allies in every sense of the term. One part of this is the care vs. cure divide. I have no interest in cure and am critical of the cure industry--specifically the SCI cure advocates. Parents of children with a disability wish cures existed. I get his. No person wants to have a profound disability--especially a parent of a child with a profound cognitive disability. But how do we get these two strong groups of people together? I have no idea. I wish I did. I hope to be inspired by a book I am eager to read. It is a memoir written by Rachel Adams who has a son with Down Syndrome. She is the organizer of Columbia University's disability scholars group. Lastly, keep writing on your blog! It is excellent. I have not made a comment but am a regular reader.

Henning S√łndergaard said...

Bill, you are right in the fact that there is a divide between people with disabilities and parents of children with disabilities. That is quite natural, I think, due to the different nature of the two groups. However, I also feel like there should be a natural kinship between the groups because some of the struggles we (will) face in our daily lives are very similar.
I have a friend who I got to know many years ago because she was an OT at a SCI rehab center I was connected to. 13 years ago she gave birth to a daughter who ended up with CP and severe cognitive difficulties, and my friend is now a full-time mom. We have had lots of disability related discussions over the years. And I have often thought that the things that unite us weighs far greater than the things that divide us in that particular case. Granted, she was pretty close to disability culture, both privately and professionally, before her daughter. But what I am trying to say is that I do think it’s possible for us to unite if both groups are willing to open up to the things that can bring us together instead of focusing on the differences.

Jisun Lee said...

The cure industry, yes, this is very alive within the DS community as well. This troubles me so much, yet I do understand it. I think there is a very profound disconnect between parents and individuals that mirrors most parental relationships. I'd be hard pressed to find a parent child relationship in which no conflict existed over the parent's idea of what they wanted for their child and the grown child's actual life. Perhaps this will be a divide that will always exist, but I hope not. When I look to others, such as the LGTB community, I do believe there's been progress made in this area.

Thank you so much for your kind words on the blog, means more to me than you probably know. I'm looking forward to reading Adams's book. :)