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Friday, October 19, 2012

I am Off to a Conference

I am heading to Washington DC today. I am giving a short presentation about the Carter Case. My focus will be on the larger ramification of a recent ruling in British Columbia. The meeting is organized by the American Society of Bioethics and Humanities. The ASBH has been kind enough to waive registration fee as it was way past my budget. I have never attended this event and am very curious about the papers to be presented and the way in which bioethicists interact. Perhaps I will be spending some time at the bar--I know this is where the real action takes place when anthropologists get together.

Below is my presentation:

Gloria Taylor had ALS, an undoubtedly devastating condition.  As Taylor lost the ability to move her body she told the press “I simply cannot understand why the law holds the able-bodied who are terminally ill are allowed to shoot themselves when they have had enough because they are able to hold a gun steady, but because my illness affects my ability to move and control my body, I cannot be allowed compassionate help to allow me to commit an equivalent act using lethal medication”.  Taylor is not the first person with a disability to make this argument.  In 1990 a Georgia court ruled that Larry MacAfee, a 38 year old quadriplegic, who was not terminally ill had the right to disconnect himself from his respirator and die. David Rivlin, also a quadriplegic, sought court intervention in his desire to die at approximately the same time. Unlike MacAfee, who changed his mind, Rivlin utilized court sanctioned assisted suicide. More recently in 2010 Dan Crews expressed a desire to die rather than be forced into a nursing home. In 2011 another quadriplegic, Christina Symanski, legally starved herself to death. The legal arguments these men and women utilized were compelling. As we have heard, Taylor argued that the provisions of the Criminal Code that prevented her from receiving assistance were inconsistent with the Canadian Charter of Rights and Freedoms that award all citizens the rights to life, liberty, personal security and equality. 
I would argue that the legal arguments presented by those people with a disability that express a desire to die share one larger and troubling cultural response: wide spread social support. These men and women are applauded in their effort to die. These people are brave!  We are eager to help these people in part because society celebrates and values personal autonomy and dignity. This is hardly an insightful observation. But it does beg the question—why do we support people with a disability that want to die? To me, the social support people with a disability receive in their effort to die via assisted suicide reveals a deeply ingrained stereotype that is not questioned. Here I refer to the fact we consistently fail to provide the necessary social supports that would empower people like Carter, MacAfee, Rivlin and Symanksi to live rich, full and productive lives.  Rather than discussing this failure the media and the court sympathetically nod their collective heads. We accept it as a given that no one would want to lose their dignity and autonomy.  Bluntly put, one is better off dead than disabled—a phrase that is used as a rally cry for disability rights activists who proudly proclaim nothing about us without us.
Of course few actually state a person with a severe disability is better off dead.  Instead we praise Justice Lynn Smith who relied on a host of scholars and experts from around the globe in rendering her opinion. For example, Peter Singer praised Smith and her decision in the Carter case noting it “could serve as a textbook on the facts, law, and ethics of assistance in dying” (Singer July 16, 20012).  Singer and others correctly observe Smith’s decision focused on at risk populations—the elderly and disabled—and concluded “the empirical evidence gathered in two jurisdictions does not support the hypothesis that physician assisted death has imposed a particular risk to socially vulnerable populations”. I could not disagree anymore. I also reject Smith’s conclusion that it is possible to design a system that permits assisted suicide and protects vulnerable populations. I object on two grounds: first, assisted suicide in a clinical setting will not be perceived as a criminal act. It will be thought of as an act of mercy. No doctor or health care professional will ever be prosecuted for assisting a person with a disability in his or her effort to die. Second, in Canada and the United States the larger bias against people with a disability carriers over and into the judicial realm. Disability theorists such as Lenny Davis (2002) have argued disabled plaintiffs are seen as narsisstic. The theory of narcissism as used by Davis reveals a central flaw of the disability rights movement: the primary problem people with a disability encounter is not a given bodily deficit, in the Carter case the inability to end one’s life, but rather society and the courts refusal to negotiate difference.  This refusal on the part of “normates” to use Rosemarie Garland-Thomsen’s awkward phrase makes requests by people like Taylor appear to be reasonable and establishes a double standard in terms of health care and end of life issues.
 Let me address my second point and the theory of narcissism. Before Taylor entered court it was assumed disability, especially one as severe as ALS, is a personal tragedy. Carter’s desire to die with or without assistance was perceived to be a reasonable response to her condition. This leap of logic is based on a very narrow definition of autonomy. Not surprisingly, the empirical evidence the court sought, specifically that the lives of people with a disability were less valued and at risk, was found to be lacking. I would counter how do you measure the value of a life and how do we define autonomy? Do we use the utilitarian logic of Peter Singer or address the literature produced by disability studies scholars who seek to broaden our understanding of life with a body well outside the norm? Smith correctly found that when dealing with end of life issues such as assisted suicide and withholding life support “a bright-line ethical distinction” was elusive.  In part an ethical distinction to borrow Smith’s words was elusive because there is a societal double standard in the way people with and without a disability are treated.  This double standard is based on a narrow perception of autonomy and calls into question why some people with a disability like Taylor want to die.  Here I think the statistics from Oregon’s Death with Dignity Act enacted in 1997 are revealing. Since 1997, 935 people have had death With Dignity Act prescriptions written and 596 people have died from ingesting the lethal medication. The most common end of life concerns have remained consistent, foremost among them: decreasing ability to participate in activities that made life enjoyable, loss of autonomy, loss of dignity, losing control of bodily functions, burden on family and friends, inadequate pain control, and the financial implications of treatment.
I am not terminally ill. Yet as a person with a disability I have felt and experienced each and every item listed. I cannot walk and have as a result lost a degree of my autonomy. There are activities I once enjoyed that I can no longer do that made my life enjoyable.  I have lost some dignity in the eyes of others. I have tenuous control of many bodily functions. I worry about being a burden to my son and extended family. I worry about the financial implications of my health care especially since I sit on a wheelchair cushion with a short life span that costs $500 and is not covered by insurance.  I have experienced severe pain that made me wish I were dead. Yet here I am deeply perplexed. Why is my existence and that of other people with a disability so easily called into question? Why does a request to die such as Taylor’s garner so much attention while budgets for social supports are slashed nation wide, cuts that are largely ignored?
I would contend that autonomy, however we define it, is fleeting, its loss hardly a tragedy. Thus I believe discussions about whether Taylor had the legal right to end her life with assistance is a smoke-screen that obscures the humanity of people with a disability. We need to keep our attention squarely focused on who wants to avail themselves of assisted suicide and why. The answer to me is obvious: people choose to die because they feel their life has no value. And whose lives do we not value--my crippled body, the elderly, terminally ill and those born with severe cognitive and physical disabilities that are deemed “incompatible with life”.  This calls into question how we define humanity. Do not be swayed by emotion. Let’s enter into a serious debate that is devoid of compassion.  This brings me back to the first point I raised—ending the life of a person with a disability, the elderly or terminally ill is unlikely to ever be considered a criminal act.  It will be perceived as an act of mercy, a compassionate and self less gesture on part of a physician. This thought keeps me up at night and makes fear accessing the health care system.
Earlier this year I wrote an essay about a chilling experience I had in the Hastings Center Report that I think calls into question the inherent dangers associated with assisted suicide.  I do not have the time to detail what happened but suffice it to say what took place was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. Health care systems are well equipped to deal with normal bodies. Efficient protocols exist within institutions, and the presence of a disabled body creates havoc. Before I utter one word or am examined by a physician, it is obvious that my presence is a problem. Sitting in my wheelchair, I am a living symbol of all that can go wrong with a body and of the limits of medical science to correct it. As a result it is all too easy to consider people with disabilities as the “other”. In the words of the noted anthropologist Robert Murphy we people with a disability are “the living symbol of failure, frailty, and emasculation, a counterpoint to normality” (Murphy 1990:1-2).  This sort of symbolism is difficult to empirically demonstrate exists for Justice Smith and proponents of assisted suicide legislation. What I can tell you is that when I see a person with a disability I consider their bodily and cognitive deficits not relevant. I see a person that has adapted and survived a hostile social environment.  I do not see an objectionable body but rather a person that has thrived and if people working within the health care industry were smart they would listen to what people with a disability have to say.