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Thursday, March 6, 2014

A Bad Cripple Goes to NYC

Last month Joseph Fins invited me to talk at Weill Cornell Medical College where he is professor of Medical Ethics. I was somewhat surprised by his invitation. Fins is the past president of the American Society of Bioethics (ASBH), a Hastings Center Fellow, and a major figure in bioethics. Our dealings in the past had been testy. Let me correct that, I have been severely critical of Fins and others about the lack of interest and concern about disability access at ASBH meetings. Last Fall I sent Fins a blistering email and as President of the ASBH he was well within his rights to hit the delete button.  Much to his credit, Fins did not delete my email nor did he reply in kind. Instead he called me directly and suggested I become part of the ASBH Presidential Task Force on disability. He also asked me to come to his office for lunch prior to the ASBH meetings in Atlanta so we could discuss the lack of access at past ASBH meetings. A week later we participated in a meeting in Atlanta with many others interested in making the ASBH meetings accessible.  While the results have been meagre there is at least an on going dialogue for the first time. 

Simply put, Fins is a major player in bioethics. He is also a larger than life figure—a big gregarious man. If he is a room you will know he is present. I enjoy his company and respect his extensive scholarship in neuroscience and neuroethics. He reminds me of the many outstanding neurologists I was exposed to growing up on neurological wards of 16 morbidly sick kids. And oddly enough it turns out his father as well as mine worked in the lucrative world of advertising—real life Mad Men. 

I was surprised and delighted to be invited by Fins to talk to residents in the morning and faculty in the late afternoon. I was surprised because invitations like this are infrequent. I consider myself an engaged scholar—I work in my area of expertise, bioethics and disability studies, but act as a scholar and disability rights activist. I am for example on the board of Not Dead Yet and at the same time work and teach at Syracuse University in the honors program. My position in disability activism and academia is to a degree liminal. I am not a bioethicist. I am not a hard core activist. I am neither fish nor fowl and I am doing my best to establish a unique position. I suppose one could characterize me as a buffer that works in two mutually antagonistic fields. It helps that I have legitimacy in academia and disability rights. I am crippled—no way to ignore that. But I also have a PhD from a prestigious Ivy League university that gets my foot in the door. Most importantly, I think I can make a real contribution via the sort of talk Fins asked me to make. 

In the last year it has become clear to me that my work resonates in the health sciences—especially in teaching hospitals. Physicians know our health care system is failing people with a disability. They see first hand the over whelming effort made during critical care to save people’s lives. These lives are then lost or destroyed in the weeks and months that follow when the required long term social and physical supports are grossly inadequate. It must be gut wrenching to watch. Imagine treating a person after a traumatic spinal cord injury and taking them from the crisis of injury to medical stability. What a great victory. But the knowledge that this same person is given an ill fitting wheelchair, an inappropriate wheelchair cushion, and after two weeks of rehabilitation is sent to a nursing home at the age of 25. This social failure must break the hearts of all involved not to mention be soul crushing for the person who was injured and is trying as hard as humanly possible to reinvent them self.

I suspect Fins gets disability far more than his peers in medicine and bioethics Fins sees well beyond any given diagnosis and considers familial, social, and economic issues. If framed correctly, I can envision him incorporating a disability rights perspective that could improve the lives of people with a disability. Based on how Fins described his recent research and his forth coming Rights Come to Mind: Brain Injury. Ethics, & The Struggle for Consciousness, his work has had a profound impact on his conception of disability. But I know something Fins does appreciate enough but will over time come to realize. We are treading into uncharted territory and mine fields abound. Incorporating a more nuanced discussion of disability in the health care setting, especially in medical education, is going to be an uphill battle. Great social skills are required as are an open mind, willingness to admit error, and the swift ability to accept change. All this is based on the premise of mutual respect. For my part, I am deferential to clinicians. I go out of my way to reassure them that I am not “in the trenches” nor do I make the life and death decisions they do. I am in short not here to second guess—a statement that prompts a veritable sigh of relief. Fins did the same thing with me and showed the respect that is too often absent in the life of a scholar with a disability

Fins went all out to make me feel welcome. The medical school picked up my expenses and Fins made sure I was escorted every where I went. He introduced me to people as his colleague and was gracious at every turn. In the morning I spoke to residents with Fins and two other scholars in a good sized auditorium.  We had a wonderful lunch at the faculty club and I got to spend some time with Kim Overby discussing her work. Kim was kind enough to show me where I was going to be speaking to faculty. To say I was more than a bit intimidated would be modest. My first thought was I am in way over my head. I half expected Obama and Putin to walk in the door with an entourage and discuss the crisis in the Ukraine. I was deep in the heart of power central. 

Rather than read my paper, “A Thick Description of the Atypical Body in the Health Care Setting”, I talked off the top of my head. I tried to accomplish three things: establish the devaluation of people with a disability that can and does result in unnecessary death. I suggested a Geertzian approach to patient care in the form of a thick description that could lead to greater enlightenment. I essentially argued medical knowledge takes one only so far, the webs of social significance of any given patient must be understood. Lastly I discussed the Tim Bowers case as an example of a life needlessly ended. I took strong exception to the reaction of most bioethicists—that Bowers asserted his autonomy and though his death was sad it was his choice to make. I tried to emphasize Bowers was given the illusion of choice and provided an overwhelmingly negative assessment of disability.

I think my talk went well. I am sure three people left the room clearly unhappy with my words--perhaps there were more.  While I am unsure how my words were received I have no doubt those that escorted me around were taken aback by how inaccessible the hospital was. Locked bathrooms abounded. Accessible entrances were blocked off. Getting from point A to point B required great thought and an obscure path of travel. As one would anticipate the more prestigious the location in the facility the greater the lack of access. The Faculty Club and Boardroom bathrooms were grossly inaccessible and gorgeous. Getting in and out of the building was a not easy either. The accessible entrance was blocked off after 5pm and required some creative maneuvering. It was one of those rare times needless obstacles actually made me happy. If my existence were truly valued I doubt bathrooms and entrances would be inconvenient or absent. This drove home an abstract quite effectively.  


Unknown said...

Great opportunity Bill and I'm sure you really gave them something to think about.

Andrea Nestor said...

I love your blog. You capture my feelings perfectly. I live in a small town in central MN, and while the buildings I need to go into are reasonably accessible (bank, supermarket, post office), there are many places I cannot access at all (beauty salon, florist, many others). I find myself isolating in my tiny condo (don't get me started on the availability of 3 br wheelchair-accessible rental housing, it does not exist here so my two kids and I are crammed into a small 2 bedroom and my daughter sleeps in the living room), rarely going out, and I don't go out with friends anymore like I loved to do when I could walk. Now it's all so cumbersome - favorite haunts require me to go in a back door beside the dumpsters and roll through a kitchen with sticky floors to get out to the main pub/restaurant. The only accessible bathroom is a men's bathroom. It's just easier to stay home and be alone. This is how a disabled person slips away - it is a gradual slump, like a slug sliding down a wall, just waiting to hit the bottom.

I look forward to your future posts!

william Peace said...

Andrea. I can completely relate to you. There are days I just cannot leave my home. I just cannot take the stares, rude comments, and ever present eye balling of my body. This is a real problem that can quickly compromise one's life. I get cumbersome too. Logistics can be daunting. But out you must go. Forget old haunts and move forward. Find new haunts. New friends. New experiences. In short, do not give the bastards the satisfaction of isolating you. Easy advice to give. Hard advice to follow. And thanks for kind words.