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Friday, May 9, 2014

Loneliness, Autonomy, Fear and Tim Bowers

Every person I have met with a disability routinely feels lonely. I am not referring to typical loneliness most feel at some point in their life. I refer to loneliness in a deeply painful way that makes your soul and bones ache. This is the sort of loneliness I feel. It is the loneliness most people with a disability feel on a regular basis. I know I do. I know there are days I am weary. I simply cannot face a hostile world. I cannot leave my home because I do not have the psychic strength to deal with the fact my existence is not welcome. I cannot deal with the routine harassment or stares or the mothers who yank their kids arm when they see and tell their child "watch out for that wheelchair". Well done, mom. A lesson has been learned: fear the human being using a wheelchair. 

I am not particularly lonely today. Yet I want to write about loneliness because my friend Stephen Kuusisto at Planet of the Blind astutely wrote that he belongs to "fellowship of lonesome people". Link: http://www.planet-of-the-blind.com/2014/05/confessions-of-a-lonesome-disabled-and-autonomous-man.html Amen brother! Kuusisto contends mainstream lives, typical lives, are the "products of foundation". Kuusisto notes: 

The underpinning or “base” I’m referring to results from autonomy. Its a Greek word. It refers to the capacity of a rational individual to make informed, un-coerced decisions. People who grow up in fear don’t necessarily develop such capacities. Loneliness is a byproduct of fear. I don’t know how to be among you, it says. If I’m lucky enough to be among you, I must hide who I am. 

I never thought that loneliness was a by product of fear. Fearful I am. I know I am without a doubt very lucky. I had great parents. I had the foundation Kuusisto refers to growing up. I had a good foundation for much of my life. But I have always struggled with fear. I am a fearful man. I am fearful because I know the bipedal hordes that surround me consider my existence sad, an affront really, and most wish I did not exist. I am the symbolic representation of all that can wrong. Kuusisto is correct when he asserts:

Autonomy deficiency is the biggest problem faced by people with disabilities. We don’t talk about it enough. Instead we say “self-advocacy” —as in Joey needs to learn how to be a self-advocate...You can’t be a self-advocate, or a member of a community, or even a decent dog owner, without having achieved the capacity to make informed and healthy decisions.
Kuusisto is correct--people with a disability have an autonomy deficiency. I would not use the same phrase however. I suggest we people with a disability are given the illusion of autonomy so that those around us who despise our existence feel better when our human rights are violated. We are not bigots, we are honoring autonomy. In a word, bull. Tim Bowers was given the illusion of autonomy. Last Fall while hunting Bowers had a devastating cervical spinal cord injury. At family request, he was taken out of a medically induced coma and asked if wanted to live by his family and doctors. Bowers decided life as a vent dependent quadriplegic was not for him. He chose to die. Bowers decision was hailed as a victory for autonomy. Bioethicists crowed his death while sad was evidence bioethics has made a major contribution to patient centered care. Bowers decided for himself that he wanted to die. Peter Schwartz, Indiana University Center for Bioethics stated: The case of Tim Bowers is truly a triumph of autonomy, a case where he had a chance to make a decision.  In addition, people who knew him have asserted that he was consistent in never wanting to live in a wheelchair.  Link: http://iucb.wordpress.com/2013/11/16/tragedy-and-choice/ 

I find it hard to wrap my brain around the celebration of Bowers death albeit a sad one of supposed choice and tragedy. Bowers death was tragic. But choice? Autonomy? No. Bowers and his family did not make an informed decision. They made a decision based on fear and stunning ignorance about the quality of life for a man post spinal cord injury. All point to the fact Bowers, before his injury, had stated he would not want to live life in a wheelchair.  Let me ask this: have you ever met a person that desired to be paralyzed and use a wheelchair? Many people speculate what life post spinal cord injury is like. All come away with a negative assessment and use a throw away line like "I would never want to live in a wheelchair".  Do these people ever ask a paralyzed person what life is like post injury. Never.  If they did they would not like the answer. For example, I would state life is sweet pre and post paralysis. I like my body very much. It serves me well. In fact I would not change a thing about my life. This is the answer people do not want to hear. They want tragedy. They want sorrow. They want me and others with a disability to wail and be full of sorrow. Why is this? Kuusisto noted that:

Now everyone loves autonomy: religious zealots, ideologues, business men, politicians, generals and admirals—all wave the autonomy flag. This is because “informed” (for them) means willing. In turn they get to decide what’s healthy for you. 

This is why I am so fearful. I fear the unknown they. I truly fear any health care system dominated by people who know nothing about life with a disability. Good people in Indiana  legally killed a man. There I said it. The physicians and family of Tim Bowers needlessly killed him. They couched the decision in emotional rhetoric that obscures the real issue: Bowers was victim of a compassionate and legal homicide. In stating this I am an extremist.  Bioethicists will shut down and refuse to engage. Bowers family will cry and scream in out rage. We loved our son. I loved my brother. How dare you! I dare to state the painful and hurtful truth because I do not want others to needlessly die.  I do not want to die. All the wrong questions were asked at the time Bowers was injured. No one speculated about what he could do. No asked how can he be autonomous? No one asked how can he hold his soon to be born child? No one asked about the future? No one reached out to others with a similar injury leading a good life.  Again, this is why I am fearful. People such as Bowers that die are applauded. People that choose to live are expected to demonstrate they remain human. They must demonstrate their life is worth living.  They are, in a capitalist society, deemed an economic drain  not physically capable of making a contribution to society. Thus I would observe as many others have it is far easier to die than it is to live. But my oh my life is sweet. I would not change a thing--including paralysis. A conclusion I suspect Bowers would have come to had he been given a chance. 

4 comments:

Glee said...

Yes Bill. The Loneliness of the Long Distance Cripple. I feel it much lately as the autonomous ones walk away, cos they can.

B Burton said...

Why should anyone have to prove the value of their life? Isn't that what the Right To Life movement has been preaching: that all life is valuable?

Yet I find that I am not considered important enough for people to provide me with accommodations. Neither is my friend who has low vision. Neither is my friend who uses a wheelchair.

Dammit, we all have value. We all deserve consideration.

Ronn said...

Bill: A couple of months ago, you blogged:"... Bower's death has been hailed by bioethicists as a perfect case of patient autonomy."
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I haven't seen any bioethicist-specific surveys about the Bowers case but I can personally state that all but one bioethicicst that I have read or spoken to about this case has expressed grave doubts about the voluntariness of Bowers' decision and believed that minimal informed consent criteria were NOT met.
I don't post this as a counter-argument or as an attempt to change your generalization about bioethicists - merely as a qualified defense of my own profession. Because even a garden-variety hospital ethicist like myself recognized that the Bowers case was handled wrong and delivered the horrific message that continued life with a spinal injury doesn't even merit a cooling off period to establish capacity, much less an even-handed discussion with someone who has survived a similar injury.

william Peace said...

Ronn, As always an interesting comment. There is no monolithic bioethicist. The field is diverse--remarkably so. We have scholars like Peter Singer, Dominic Wilkinson, and there utilitarian philosophers. On the other hand we have Eva Kittay, Anita Silvers, and Joseph Fins.
When I referred to Bowers autonomy being hailed it was in reference to those who spoke to the press or wrote about his death. Art Caplan and most bioethicists quoted were very supportive if not enthusiastic. I would like to think your typical bioethicist working in a clinical setting saw Bowers death as shocking. A gross violation of standard protocol post SCI. Like you, my fear is Bowers will be used as a bench make for others who experience a devastating SCI.