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Sunday, June 22, 2014

The Disability Blues

Last academic year was without question the most rewarding of my career. I taught honors students at Syracuse University and gave a series of talks at a host of excellent universities. I talked about the lasting influence of Jack Kevorkian on end of life issues and how he preyed on women and the most vulnerable at Columbia University. I talked about utilitarian philosophy and its impact on those with significant disabilities at Yale University. I spoke to residents at Yale Medical school as well about how I was once offered assisted suicide.  I visited New York City and spoke at Cornell Medical College and discussed Clifford Geertz "thick description" of the health industrial complex and the atypical body. I went to the American Society of Bioethics annual meeting in Atlanta and gave a paper on the concept of autonomy.  I organized a one day conference at Syracuse University entitled Lives Worth Living.  The year was in short a whirl wind. A deeply satisfying whirlwind.

I am struggling to adapt to life not being at the same rapid pace this summer. As a result, since class ended in May I have been fighting the disability blues. In retrospect, I wonder what did I accomplish? In the last few months the answer to this question has periodically been nothing. I failed.  I did not influence others. I did not in any manageable way change the lives of people with a disability nor did I influence another scholar.  Abuse of the most vulnerable among us with a disability remains rampant. I read a story about an elderly man who killed his severely disabled son and then committed suicide. He feared after he died no one  would care for his son and was seriously concerned  his son would be abused. I have read stories about forced institutionalization and sterilization. I read about growth attenuation yet again.  I read how more and more students with a  disability are attending university but an even higher number are dropping out in debt and without a diploma. More personally, I encounter physical and social barriers on a regular basis. The other day when I went to the post office a car was parked in front of the ramp. I had to navigate down a hill in traffic to get to the next nearest ramp. I tried to check into a motel last week and the staff continually tried to talk to my son rather than me--the human using a wheelchair.  I could go on but the point is clear. Physical and social barriers to basic social inclusion are the norm.

All of the above gives me the blues--a deep feeling of sadness and difference. I am not typical. I am not normal. I will never be accepted. I will spend the rest of my life demonstrating that I am a human being, a man that should be respected and valued. Few people see the man I think I am. Most see a wheelchair and instantly think of all that I cannot do. This thinking is bizarre to me.  I see a crippled person, a human being with an obvious physical or cognitive deficit, and I think there goes a person that has endured and fought back against the sting of baseless disability based prejudice.  My crippled peers that are out and about are hard asses that have adapted and thrived. But my God some days I am just spent!

This summer I have had too many wasted days. Days of depression where I think the world is hostile and rotten. I cannot leave my home and remain shut in.  Two triggers have heightened my unhappiness. I grow increasingly dismayed by the conference I attended on the Philosophy of Disability at Syracuse University. I met some fascinating scholars but found the philosophy of disability to be so abstract it had no relevance to the real world. Why one need not even have any connection to disability to study disability. The lack of connection made one more objective in the estimation of some scholars. The second trigger was a mere photograph. I have been cleaning out my books in preparation for my move to a small town near Syracuse, NY in August. A week ago I found a photograph of me dated 1969. The photograph was taken just before I began to get sick and present with profound neurological deficits and severe pain. Looking at myself, a typical boy about to go through a decade of misery, made me shake my head. I never think of myself as typical, normal. It was a shock to see myself with a typical body. I was a cute little boy. I was standing near the house I grew up in. I had on jeans and red and blue stripped shirt. I was standing on a scooter I loved. I vividly remember the scooter and shirt--it was my favorite. The picture made me sad. I mourn for that typical child. I forget he ever existed. What I remember of my preteen and teen years are pain and suffering. Sure I recall the love of my parents and the dedication to my care. Without their fierce advocacy I would have died. But the reality is pain was my best friend for a decade. Pain left an indelible memory. So too did my medical care. Three massive spinal cord surgeries, dozens of spinal taps, life on the neurological wards of 16 morbidly sick kids most of whom would die, nine months in various body casts, three months post sclerosis surgery flat on my back not allowed to get out of bed, taking a boat load of prednisone and decadron, my body blowing up like a balloon with the typical moon shaped face, lots of demerol that took the edge of pain but did no eliminate it, etc. The tale of my childhood is long and miserable. The end result, a crippled atypical body that commands no social respect and a life in which I am forced to continually defend my right to live.  The worst part of my life is not the the blatant bigotry I encounter. The most damaging part of my life (where my concept of self in a Goffmanesque sense is challenged) is engaging others scholars interested in disability that consider disability to be a mere intellectual game or academic puzzle. These scholars mean well no doubt. They care about their work but as I learned in Syracuse it is divorced from the real world. I cannot do this. It is in part why I feel estranged from disability studies. I cannot separate disability based activism from my work as a scholar in disability studies, bioethics and anthropology. That is who I am.

In search of solace I have been doing a lot of reading. At the conference I met Simo Vehas who I liked very much. Our meeting inspired me to re read a book he and two other scholars edited: Arguing About Disability. Last semester I required my students to read the Introduction and two other chapters. One concerned cochlear implants, the other on the preference for deaf embryos.  In retrospect I should have had students read Jackie Leach Scully's chapter "Disability and the Thinking Body".  Scully discusses the difficult transition in the way disability is framed. Once the domain of the hard or medical sciences disability is now perceived by some as a form of human variation in a Darwinian sense. Disability for me is an emancipatory movement tied to traditional notions of minority rights issues. But as many know disability touches upon a diverse number of fields and cannot be perceived in isolation. The challenge disability presents in the words of Scully is it "offers new perspectives on issues such as autonomy, competence, embodiment, wholeness, human perfectibility, finitude and limits, the relationship between the individual and the community, all of them notions that pervade every aspect of our lives, issues with which moral philosophy and bioethics constantly grapple. It recentres the body within philosophical thought.

My anthropological spin on the above is that a cultural divide exists between bioethics, academic disability studies scholars, and philosophers who do not grasp the gritty reality most people with a disability encounter on a daily basis. Sure many scholars with a disability work in these disciplines and I include myself here. This life experience however does not necessarily lead to enlightenment nor does it in all cases provide scholars with unique insight. We have a real problem that has yet to be resolved. I have put a great deal of thought into this and have been unable to find the words to express it. Again, Scully comes to the rescue. Here is the heart of the problem from my perspective:

philosophical work on disability is hampered by lack of answers to some very basic questions about what it is like to live as/with an anomalous body. The challenge of  unusual embodiment is that it poses hard questions of justification to normative standards, especially to the normative ethical evaluations that are performed from a non-disabled perspective (that is, most normative ethics). I would argue that the philosophical engagement with bodily difference will not make much progress unit the data base of empirical, experiential and scientific knowledge of it is expanded. And this relies on philosophers, social scientists and life scientists taking an interest in disability as a phenomenon worthy of study rather than a problem to be dealt with.

Major props to Scully. She hit the nail on the head. Problem one is philosophers talk to other philosophers. Disability studies scholars talk among themselves and are fighting to establish disability as a legitimate avenue of research. Bioethics scholars and those in the life or hard sciences are just as insular. There is no multidisciplinary effort to establish disability as a valued academic inquiry. The result is the existence of people/scholars such as myself is problematic. The problem (people with a disability)  is individualized and scholars fail to address the systemic or fundamental flaw that is blatantly obvious to me. That flaw being the failure to acknowledge my humanity and civil rights. This plays out in the formation of a conference at Syracuse, a university widely respected for producing serious and important scholarship in disability related fields of inquiry, that presented profound access issues. In individualizing disability as a problem to be solved enables ingrained exclusionary practices to continue. Another example should suffice. For the last year I have advocated for the inclusion of disability related topics and disabled scholars at the American Society for Bioethics and Humanities annul meeting. Last year I was the Ombudsman for disability at the annual meeting. In looking back at my work and the great deal of time I spent advocating for the most basic forms of access at the ASBH meetings I accomplished virtually nothing. I have spent approximately ten days trying to do something very simple. Reserve a room at the discounted rate given to ASBH members in San Diego. This should take no more than ten minutes on line. However if a scholar with a disability wants to share a room and have a roll in shower (a standard request) the work involved is significant. It took me many phone calls and emails to the ASBH and hotel offices to reserve room. The reason for this is obvious: I am a problem. My attendance is a problem. An ADA room is a problem. No one wants to think of disability as being more than an individual problem. This plays out reserving a room, attending a conference and publishing and presenting papers. Everywhere I go I am a problem.

I have news for the world: I am not a problem. I am a human being. All people with a disability are not a problem. When all the academic discourse is stripped to its barest essential what philosophy, disability studies and bioethics should reveal is that we people with a disability are merely human. Humans that in the face of great social and physical barriers and significant bodily deficits become ever more human. In fact our human connectedness with others only heightens the human to human bond. A bond that calls into question cherished notions of autonomy and rugged American individualism. Hence my existence is a threat. My presence at academic meetings is unwanted and odious.  I represent nothing more than a problem. My humanity thereby is denied. No wonder I often feel alone. No wonder melancholy is sometimes my best friend.