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: