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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: 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: 

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. 

Thursday, May 8, 2014

Life is Never Dull in the Land of Disability

I thoroughly enjoyed using my handcycle all winter and this wet and cold spring thanks to a trainer. My bike sits smack dab in the middle of my living room. A perk of living alone is that no one complains about the appropriateness of a bike in the middle of the largest room in my house. As the weather theoretical is supposed to be warming, I am eager to ride my bike outside. I have had a few rides outside but not many. I am still learning about my bike too. Yesterday I brought the bike to a great local bike shop for a tune up. I had a long gear talk with the bike guys. Bike people I have learned are gear geeks. One and all were very impressed with the bike design. No upgrades are needed and the bike needs a few minor tweaks. As I left the bike shop I felt really good. No one asked rude or intrusive questions such as why I was paralyzed. No one stared at me. No one was rude. No one said anything nasty. The focus was squarely on my bike and because it was different there was even a cool factor involved. Maybe, I thought, people are not as rotten as I think. Maybe ableism will become a thing of the past. Maybe I will fit into mainstream society before I die. This is a weirdly optimistic line of thought.

For those that know me, do not worry. I am not going to suddenly become Mr. Sunshine. As is the norm, one positive social interaction at the bike shop was quickly followed by an overwhelmingly negative experience. I went to the local market after I left the bike shop. Within minutes I knew I was in trouble. An older man started following me around. He kept his distance but it was painfully obvious he was stalking me. I was worried. I knew he would engage me at some point. I knew it was going to be unpleasant.  I did my best to lose the guy. I succeeded--sort off. As I left the store there he sat in a pick up truck in handicapped parking no less waiting for me. Worse, he was on the passenger side of my car (I enter my car on that side). I put my bags in the back of my car and left my car to go to another shop. I do not need to go anywhere but I hoped the man would tire of waiting for me. I had no such luck. Screw it. I went to my car and the man is standing between his car and mine. His driver side window is down and his wife is sitting inside. I know I am screwed. I open my door lock my wheelchair and he drops the bomb I knew was coming. He said "God struck you down because you have evil in your heart. You committed a mortal sin". My face remains passive as though set in stone. He went on: "If you are not evil God struck you down, crippled and maimed you body, because your parents are evil and committed unspeakable sins for which God is punishing you". His wife then chimed in: "We will pray for your rotten soul and terrible body. God may forgive you. You must pray for forgiveness. Even evil people can see the light through the goodness of God".

These two radically different social interactions took place on the same day, in the same town, and within a mile of each other. Is it any wonder newly minted crippled people struggle? I am reminded of a line in excellent film Murderball: "In the beginning paralysis is a mind fuck". The mind fuck is not adapting to a paralyzed body but to the verbal assaults by strangers, social isolation that comes with wheelchair use, and stunning ignorance routinely displayed by bigots such as those I described above. I have been paralyzed for three decades and still struggle when accosted. I have learned engaging people who invoke God is punishing me is useless. However, I have developed a reply that will at least lead to silence. I replied to the man and woman by simply stating "Thank you for sharing your thoughts" with dripping dead pan sarcasm.  I better tread lightly here, who knows I might get struck by lightning.

Sunday, May 4, 2014

Has the End of Life Been Hijacked?

I regularly find myself puzzled by advocates for assisted suicide.  There is a fervor for death I find unsettling. That fervor is palatable in some people. Here I think of Thaddeus Pope, a legal scholar I respect but a man I do not understand. Why I wonder do advocates for assisted suicide get so excited when they engage me and others who are opposed to assisted suicide? I also wonder what do they really think of me? Am I respected as a scholar and activist? I simply do not know. In fact I sometimes feel like a speed bump in the road--a warning to slow down that can and is often ignored.  What I do know is that far too many people in this country die badly. Alone, often scared, and almost always in a hospital. This is not good. This is the common ground advocates and opponents share--we want the end of life to be as humane as possible. We are profoundly different in the way we approach this fundamental dilemma.

As I drove up to Syracuse early this morning I was thinking about end of life issues and how it feels nearly impossible to change other people minds. I find this frustrating in the extreme. I also feel there is a core problem I am missing. So as I pumped gas into my car I was dumbstruck to read an article in the Vancouver Sun. The Canadians I feel have a more nuanced approach to end of life care. I could be wrong but long ago a Canadian Border Guard told me "Unlike you Americans we still value dissent". As I read "Death with Dignity Isn't About Euthanasia, Says Palliative Care Expert". See: In this article Harvey Chochinov. Here is an excerpt from an otherwise mundane article:

While palliative care — in which patients are kept comfortable, clean and pain free — is a growing part of the public conversation about death, Chochinov says Canada lacks national guidelines for the humane treatment of a dying person.
Instead, he says, the very notion of dying with dignity has been “hijacked” by the right-to-die movement.
“I think we’re going entirely in the wrong direction by saying the way to deal with our inadequacies in end-of-life care is by a euthanasia policy. I think we need to do something much more constructive, such as giving doctors good training in pain management.”
Even where doctor-assisted death is legal, a small fraction of the population requests it, he notes.

The right to die movement? When death become a right? We are all going to die. Death is a biological certainty.  Death is not a right but part of the life cycle. Like Chochinov I believe we need to have a vibrant national debate about how we deal with the end of life. I agree we need to foster a constructive discussion. Jack Kevorkian put this discussion on the front page of every newspaper in the nation in the 1990s.  Kevorkian, unknown to many young college students, was a polarizing figure--a ghoul really.  He was a polarizing influence. Who I wonder can bridge the gap between people such as myself who oppose assisted suicide and those that fiercely advocate for it in the form of state laws and the push for VSED as a viable final solution.  Is it even possible to build a bridge between two mutually antagonistic groups? When I read the rhetoric on both sides I think any sort of common ground will never be found. I hope I am wrong. I am however convinced of one thing: framing end of life, death itself, as a right and forming a right to die movement is inherently wrong.  In short, I second Chochinov's call for better medical training and pain management and more--more as in teaching physicians to be kind and compassionate to the patients they treat who are approaching the end of their life or are mere hours from death.  This is hard work. Emotional labor too few physicians are willing to engage in. Now that is subject worthy of sinking our collective teeth into.