I suspect most people with a disability fear even the most routine hospitalization. We do not fear any of the commonplace indignities those without a disability worry about when hospitalized. Our fear is primal–will our lives be considered devoid of value? This concern was addressed by Diane Coleman and Stephen Drake, Anita Silvers,and Theresa Soriano all of whom I want to thank for writing thought-provoking responses to my essay.
What I experienced did not occur in a social vacuum. As Coleman and Drake wrote, my experience is indicative of a much larger pattern of discrimination not usually addressed by bioethicists. For instance, the National Disability Rights Network report that Coleman and Drake referred to, which condemns the withdrawal of life saving treatment from people with a disability, has failed to resonate and has garnered little or no support within the bioethics community.
Worse yet, few scholars have discussed the implications of New York State’s Palliative Care Information Act for people with a disability. The law, which went into effect in 2011, requires “physicians and nurse practitioners to offer terminally-ill patients information and counseling concerning palliative care and end-of-life options.” The hospitalist I met did this–my prognosis was made clear, the range of options discussed, risks and benefits were detailed, and my rights to comprehensive pain management were articulated. The problem is, at no point was I terminally ill.
Disability in its many forms does not in any way mean one is terminally ill. Carol Gill, Marilyn Golden, and many other disability scholars have forcefully argued that end-of-life autonomy when applied to people with a disability becomes a vehicle for social oppression. I experienced this first hand and, as Coleman and Drake point out,I am hardly alone.
Anita Silvers wrote that my experience stirred “familiar feelings of fear.” I decry the fear that people with a disability feel when accessing health care. This fear, as Silverspoints out, is palpable and figures significantly in narratives produced by people with a disability.
Much can be learned from the disability experience. We people with a disability are highly skilled at navigating the health care system and institutions such as hospitals. Given this, we have much to offer others, who too often buckle under adverse conditions. We people with a disability have what anthropologist Clifford Geertz identified as “local knowledge.” That is we are intimately familiar with the rituals and symbols others may not notice that can and often do dictatebehavior. Thus, people with a disability are masters of adaptation and representative of human variation.
Silvers’ comments hint at this and to me highlight that what is deemed “normal” in a health care setting is a transient experience in the life cycle. I am reminded of the poet and disability scholar Kenny Fries, who eloquently wrote in the History of My Shoes about Darwin’s journey toward evolution and Fries’s own narrative of life with a disability. For Fries, these seemingly disparate narratives illustrate “all I have come to understand about chance and change, fear and transformation, variation and cultural context, ideas about the body that question the definition of existence of difference in all of our lives.”
Theresa Soriano needlessly apologizes for her profession and the fear and alienation I experienced. Her comments reveal a cultural- and class-based divide that exists between patients with a disability and the physicians charged with their care. Much can be learned if physicians and people with a disability willingly enter into a dialogue that extends beyond a detailed medical history.
I have no doubt the hospitalist I met considered me an atypical, time- consuming patient with a complex history that lacked basic social and medical supports to survive. This assessment is nothing more than a caricature, perhaps based on the conglomeration of past experience. Thus I truly appreciate Soriano’s call for physicians to listen far more carefully to their patients. I second her assertion that communication is fundamental to patient-centered care. I heard these buzzwords often but not once did I see them in action.
What is particularly sobering to me is Soriano’s statement that many patients whom physicians routinely encounter cannot articulate the indignities they have experienced. Based on Soriano’s observation I cannot help but feel that my words carry extra weight, as I am able to articulate my views clearly.
Finally, when I hear the word “disabled” I do not think of impairment or a medical diagnosis, but rather about a class of people who call into question accepted notions of social justice and equality. This is why I fear the health care system. In Disability, Difference, Discrimination: Perspectives on Justice and Public Policy, Anita Silvers, David Wasserman, and Mary Mahowald wrote: “Traditional democratic morality privileges the perspectives fashioned by familiar ways of functioning, thereby magnifying normal bodily and intellectual performances into standards against which the disabled shrink so as to become invisible. Traditional political morality thus has adopted a discourse in which disability, in virtue of the functional limitations it represents, is easily supposed to alter people so profoundly as to render them naturally and irredeemably unequal.” The phrase “irredeemably unequal” is exactly how I feel when I enter a hospital or try to access the health care system.
Given my inferior social status, why not have a life and death discussion at 2 AM? The discussion needs to be had; what is the difference in timing? This gets to the heart of the issue: would such a discussion have been had, at any time of day, with a man who walked in the door with a comparable condition? Not a chance. I did not walk in the door and I am paralyzed. As such, my life has diminished value. And this thought process is something I will continue to rail against.
William J. Peace is an independent scholar. His research interests include disability rights, bioethics, body art and modification, and the history of anthropology. His blog is Bad Cripple.