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Tuesday, December 24, 2013

The Relentless Push for Assisted Suicide Legislation

Relentless. Those that seek to pass assisted suicide legislation into law are relentless. Nothing will disuade them from their goal. I have not observed this sort of commitment outside of religious or political fanaticism. I am not suggesting the people and organizations that advocate for assisted suicide are fanatics. Quite the contrary, most are good people with a strong opinion on an important topic. Most that advocate for assisted suicide are white, middle aged, and well educated. I will acknowledge they have good reason to be concerned about the way we die. To witness the bad death of a parent, spouse, sibling, child, or close friend is a horrific life changing experience. What advocates fail to grasp is people die badly for cultural reasons. Americans fear death and value autonomy above all else. I find it tiresome to hear people state that when I cannot control my bladder and bowels I want to die. I will not let another person wipe my ass, dress my body, and feed me. I would rather die than go to a nursing home. All of this undermines a narrow concept of autonomy.

I too bemoan the fact people die badly. However, assisted suicide legislation is not the answer. We simply do not need such laws. I have long wondered why people insist on pushing assisted suicide legislation when what is need is a national discussion about end of life in general. My recent experience in Boston testifying in opposition to H1998 helped me understand where proponents of such legislation have gone wrong: they have turned the debate surrounding the end of life into a public policy question.  At no point are the larger cultural implications of assisted suicide legislation considered. This reduces the debate to be about individuals rather than about the social forces that drive one to conclude their life has no value and death is preferable to life. To me, this is a socio-cultural tragedy not an individual failure or issue of choice. More to the point, lives are at stake. This was on full display symbolically in Boston. Proponents of assisted suicide wore blue stickers that read “My life. My Choice. My death”. This slogan is wrong. Simply put, no human being dies in a social vacuum. Death is never about an individual alone.

Recently I came across an article circa 1996 by one of my former professors, Cheryl Mwaria. In “Physician-Assisted Suicide: An Anthropological Perspective” she wrote “Missing from this debate is a discussion of the social  consequences of hidden expectations and obligations with respect to access to health care, allocation of resources, terminal and chronic illness, disability, difference, suffering, and the nature of death itself”.  Anthropologists have known that the end of life and suicide are perceived quite differently from culture to culture. This is not exactly news to most social scientists. After all one of Emile Durheim’s most famous texts is Suicide written in 1897.  Durkheim observed that there were four types of suicide: Egoistic, Altruistic, Anomic and Fatalistic. For those interested, I urge readers to take a fresh look at Durkheim. I have and in conjunction with the work of Margaret Pabst Battin’s Ethical Issues in Suicide I think it is very hard if not impossible to ignore the cultural reasons why people choose to end their life. Thus the sticker My life. My choice. My Death undermines our ability to understand the social mechanisms that can and do lead to unnecessary deaths. Those most at risk are those with chronic illnesses, the terminally ill, the elderly and those with a disability. Let me put it more bluntly, my life is at risk.  

Those that argue assisted suicide is about individual choice, the relief of pain and suffering are being disingenuous. People do not choose to die because they are in pain. People die because their life lacks meaning and they fear losing their autonomy.  But groups such as Compassion and Choices that lobby for assisted suicide legislation never define what autonomy or dignity is. A good death is not defined by those for or against assisted suicide legislation. It seems to me a good death can radically differ from one person to the next and from one culture to another. Compassion and Choices would have people believe there is a uniformity in the way people die. This is simply incorrect from a social scientific viewpoint and constructed on sloppy thinking. As Mwaria pointed out a term such as death with dignity encompasses a hidden assumption: “that life with a profound disability is lacking dignity. There is  a genuine and warranted fear on the part of many people with profound disabilities that their lives will devalued, considered not worth living”. This plays out in a myriad of ways throughout the life cycle but is most apparent at the start and end of life. Trisomy 13 &18 was until recently considered a condition incompatible with life. Thanks to the work of Barb Farlow and others this belief is changing. Even staunch advocates of assisted suicide such as Battin concede what is known as the social burden argument is “problematic” with regard to physician assisted suicide. Let me be more blunt: people with a disability have good reason to fearful because physicians who do not know anything about life with a disability are the experts and gate keepers when it comes to assisted suicide.  What physicians know is the cost in terms of care and finance can be enormous. Here enters scholars such as Peter Singer and other utilitarian philosophers. They have changed the cultural perception of death in academic and popular culture. Rarely do I hear people discuss how we can compassionately care for the sick. Instead the phrase patient centered care is thrown about as the panacea that can correct all wrongs. In reality patient centered care means you are on your own. I never hear people discuss the need for social supports for people with a disability. What I hear and read about is the efficient expenditure of limited health care resources. For most this is an interesting topic of discussion. It is an abstract discussion seeking to help the greater good. For me the subtext is obvious: I am an expensive person. My existence and others like me is costly.

Clearly I am not in a warm and fuzzy mood on Christmas Eve. I am seriously worried about my future. I am a white, single, middle aged man who will grow old alone. This scares me. I am not afraid of dying. Death is inevitable and I plan to squeeze every last ounce of energy out of my body. A body that has served me well despite being paralyzed. I will not under any circumstances go gentle into that good night. I am not worried about myself. I am worried about a nameless and faceless physician who I do not know that will decide I have “suffered enough” or lived long enough. Perhaps I do not need those life saving antibiotics. Perhaps this physician will paint a gloomy picture of the future that any sane person would find unacceptable. I do not envision things getting any better.  

Monday, December 23, 2013

Watch Out

Like many others, I struggle during the holiday season. Holiday cheer often creates a time of great stress, family strife, financial stress, and depression. I think I have experienced much of this in last week or so. I have also been happy. My son is home and Sunday we went to the American Museum of Natural History and Zabars.  We enjoyed a West Side day in the city and it was amazingly warm. Nearly 70f.  It was great to see lots of families and children of all ages stare in wonder at the impressive museum collections.  It was not an easy day for me. My wheelchair is akin to a portable social isolation unit. I cannot simply enter an elevator like others. On a busy day I wait with others who do there very best to distance themselves from me. I heard dozens of parents tell their children "Watch out for the wheelchair". I saw other parents yank their kid's hand hand firmly and pull them away from me. I was stared at often. I was avoided by most. This bothers me. Bad lessons were taught by good parents.  I felt great stigma.

As I drank my tea this morning I was very tired. My son and I had a late into the night chat about life. It was truly wonderful but I was slow to get moving in the morning.  Then I read Stephen Kuusisto's latest post at Planet of the Blind and knew I was not alone. Link:  I was struck by the following: "I'm just a blind guy. I walk with a guide dog. I don't represent anything.  I don't portend God's unhappiness. I don't need you to prat for me. I don't require a donation. I don't want you to run in front of me and open the door".  For people with a disability we always seem to represent something we are not.  Anonymity is impossible. Routine is never routine. Social exchanges are awkward at best. Physical access is never simple.  Stares common place. It is hard to feel normal if not impossible. The ordinary is impossible. We people with a disabled body represent something we are not for others who know nothing about disability or my life in particular. The psychic drain this causes is a heavy burden to bear. It is in fact relentlessly depressing. It wears on you in an evolutionary way. It is easy to be ground down. It is easy to to let millions of small psychic cuts and wounds destroy your life. It is easy to remain shut in to your home and away from others. It is easy to cope in self destructive ways. There are many easy ways to be defeated by the bipedal hordes that think they know all about my life when in reality they know nothing.  Like Kuusisto, I represent nothing. I am simply a human being. Nothing more, nothing less. And yet when I was driving home with my son I felt less than human and this is not an easy reality to fight.