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Tuesday, December 30, 2014

The Right to Die

I find the notion that one has the right to die impossible to disentangle. Death is not a right it is a biological inevitability.  All humans that are born will die. Death is inevitable. The so called right to die is incorrectly framed. People want to control how their life will end. Superficially, this makes sense but typically people die in a hospital or nursing home after a long physical decline. According to various sources, only 25% of Americans die at home. What the right to die really involves is a primal desire for control. In my opinion the belief a person can control one's death is narcissistic in the extreme.  As I have noted many times, we do not live or die in a social vacuum. Our death has meaning that extends well beyond the person that has died or is dying. Our lives are not equally valued, a fact those that advocate for assisted suicide legislation refuse to acknowledge. Bias exists in many forms. For me, the bias I deal with on a daily basis is called ableism. I rarely hear this term. In fact the only place I hear this term is on university campuses. Fred Pelka, in the ABC-Clio Companion to the Disability Rights Movement, defined ableism as follows: "Ableism is that set of often contradictory stereotypes about people with disabilities that acts as a barrier to keep them from achieving their full potential as equal citizens in society". 

Ableism is deeply ingrained into the fabric of American society. Ableism is everywhere. It is in our language and use of metaphors. It is in the built environment. Ableism surrounds us and is impossible to avoid. I come across the worst sort of ableism and I do not even need set foot outside my door.  I continue to research and write about the death of Tim Bowers, a man that experienced a severe spinal cord injury and died within 24 hours. I was looking for follow up stories in small town Indiana newspapers where Bowers lived and died. I discovered a dreadful article about life as a quadriplegic in the Indy Star. Here I refer to Marisa Kwiatkowski entitled "He Had the Right to Die. But Could He?" Link: http://www.indystar.com/story/news/2014/12/20/right-die/20696633/ This article can only be characterized as ablesim run amuck. The article is about Arun Goel and his family. In 2001, Goel broke his neck and as a result is a quadriplegic. Goel had recently retired from a practice in cardiology and his wife, Sarla was a pediatrician. The main reason the article was published was because Goel's daughter, Malini, recently made a short documentary about her father, "Should Tomorrow Be", that won best shorts competition at the Mallorca International Film festival.  I have not seen the documentary which is apparently based on films taken at the point of injury and recovered many years later.

I have no idea what sort of life Goel lived before or since his injury. All I know is he has an upper level injury and experiences the typical complications. I have no issues with the family.  I do have serious issues with Kwiatkowski. The language used in her poorly written article is deeply objectionable. The emotional rhetoric is over the top.

I quote:

 "Tears leaked from the corners of Dr. Arun Goel's eyes, pooling on the pillow under his head. He couldn't brush them away. His daughter, Malini, wiped his cheeks for him. She caressed his forehead. That gentle stroke of her fingers was more than just a tender gesture between father and daughter. It might be the last moments they spent together". 

Stunning words even for a small town newspaper. What this conveys and is designed to prompt is quite obvious; in a word pity. Goel's injury "left his mind intact" and required "life sustaining treatment". Equally obvious leap in logic--his injury is a nightmare of the worst sort, a mind intact in a body that can do nothing. Oh the horror. But wait it gets worse. Goel's injury gave him "the legal right to decide whether to continue receiving that treatment. More painfully blunt, Arun had a choice: life or die". Oh please. Every person has the right to receive or refuse treatment. If a typical person had an infection they could refuse to take an anti biotic and untreated would become a life threatening condition. The only difference between Goel and a typical person is that his life as a quadriplegic is inherently different. Different here means less valuable as in his life does not have the same value as a person that is bipedal. I know this because Kwiatkowski thinks Goel's life is "a story of love, of family, and maybe, of incredible will power." This is ableism in its purely emotional form. Goel is a tragic figure of epic proportions. Nothing could be worse than a spinal cord injury. Kwiatkowski breathlessly noted: "Arun, who had walked four miles on the treadmill the day of his accident was a quadriplegic. He would never walk again. The 62 year old couldn't scratch his nose, hug his family, or wipe aways his own tears". I cringed inwardly when I read those words. How misleading. A second reference to Goel crying and tears. And no hugs? I am sure his family hugged him many times. Why people even hug me. Amazing? I think not.

The article blithely moves on to 2006 when Goel decided to die. People flew in from all over the world to say good bye. His family pleaded with him not to die. Goel did not want to be a burden. He feared living in a nursing home. His family tried to bribe him to live with offers of getting him a puppy or taking a trip to France. Goel supposedly told his family dependency was a disease. The family had signed living will stipulating that neither spouse would receive more than three months life sustaining treatment. According to Kwiatkowski, "he decided to exercise his legal right. He decided to die". This is grossly misleading. This too is ableism. It is simply assumed life as a quadriplegic is a fate worse than death. Goel had suffered enough. But wait there is more! I sound like a carnival barker. Goel decided to live and in 2007 he received a diaphragmatic pacemaker that enabled him to breath on his own. This is life changing for a quadriplegic. Not for Goel though--doctors told him his life expectancy was six months to a year. This estimate was made nine years ago and places Goel firmly in the miracle category. His disability and life are individualized. No one wondered about the life changing ability to breath off a ventilator. No one asked why would he require nursing home care. Why did no one deem Goel depressed and in need of psychiatric care and perhaps medication? All that people saw was what he could not do. Apparently Goel's "diagnosis" prevents him from venturing far from home. His wife, Sarla, is apparently his primary care giver and according to Kwiatkowski "takes him to restaurants, concerts, or galas 10 to 12 times a year". The phrase here dehumanizing and infantilizes Goel.

At age 70 Goel apparently has mixed feelings about life. Unlike others his misgivings are about the choice to live or die post spinal cord injury. Again, this is ableism. When I think about my life I never frame it as pre and post paralysis. In fact no one I know does this. Life is what you make it. All people have strengths and weaknesses. My disability, like all others with a disability, is about much more than what my body cannot do. Walking is not relevant in assessing the contributions I have made. Is my disability a variable? Of course as is Goel's but it is not how I frame my existence. Disability is a part of my identity--note the word part. What bothers me is not the physical deficits I adapted to long ago but the social consequences of disability. I decry the fact a wheelchair often acts as a portable social isolation unit. I abhor the fact many lives have been lost and no one seems to care about this outside of the disability rights community. Articles such as the one I have deconstructed are counter productive and represent a real missed opportunity. Like I said ableism run amuck.

4 comments:

h smith said...

The idea of having an intact mind in a body that wont respond "is" terrifying though and that isnt ableism, its human and primal. Things like locked in syndrome and high sci's are among the worst nightmares people can imagine and ableism wont go away until we acknowledge and talk about that reality. And about the fact that disability does suck however we try to spin it. Because we live in THIS world, not in a wished for ideal.And just as dying isnt done in a social vacuum, neither is living.

I became a wheelchair user 5yrs ago, and powerchair dependant 18mths ago, minus the vital powerchair part which means I'm bedbound and unnecessarily needing fulltime care. I have a very distinct before and after life, Before where I was valued, respected,considered part of my community and society, and After where I'm not. Before when I had a life worth living, and After when I really dont.

I battle the comparable attractiveness of death constantly, because death "is" preferable to the existence I now have. But I'm still here because I'm too angry and bitter to end my own life. How dare my fellow humans discard me like this, purely because my body melted a bit and needs some help to stabilise and mobilise. How dare people think its acceptable for my life to be wasted staring at a wall wondering if I'm going to eat today when with a bit of care,equipment and a social attitude switch I could be cooking my own meals and sharing them and my life with other human beings whos time for me isnt dependant on my chequebook. But sadly no amount of indignation, rage, sorrow, or any other emotion or attitude, changes reality. Society dares, just like it used to dare putting crippled babies out in the forest to die, and many of us are powerless against that fact.

And thats why the intact mind- unresponsive body thing terrifies people. We know our fellow humans wont have our back.Losing the ability to physically move ourselves out of danger and towards life sustaining resources is something that its sensible to fear when you're living among humans.

And the occasional story of a severely disabled person with the good fortune to have resources, equipment, loved ones willing and able to support them etc, having a great life in spite of their physical condition, is just their individual story. But if that ever became the norm we'd maybe stand a chance of fighting ableism.

Happy new year...

william Peace said...

HSmith, Not sure how to respond. Disability sucks. No argument there. Your obvious anger however is misplaced. There is the physical aspect of disability that is undeniable and life changing. This is easily adapted to over time. At the 5 year mark you are just getting started with the adaptation process. What you are missing is that declaring a cervical injury a nightmare ignores the social consequences that do far more damage than an injury itself. Deeming an injury "the worst nightmare people can imagine" dismisses the social dimensions, individualizes disability, and reinforces well worn stereotypes. No one asks why there are so few social supports. No one asked why access to mass transportation and housing is complex and difficult to access. No one asks why PCAs are poorly paid and trained. These are all practical problems that should not exist. This is why ableism is a key concept. I would suggest you direct your anger outward and question why death seems ro be preferable. There is a great chapter in Robert F. Murphy's book the Body Silent about anger. Anger directed outward is healthy and makes change possible. Anger directed inward is inherently unhealthy. When Murphy wrote his book he was a quadriplegic. I urge you to read it. Good luck from a guy 38 years post paralysis who considers life to be sweet.

h smith said...

Hi William, its my ability to communicate clearly thats misplaced rather than my anger, which is very much focused outside. I agree with you, it isnt the physical aspect of disability thats the (or my) problem.

It isnt my body or its limitations that make death look like a rational choice. Its the decisions made by the society I'm in about my worth as a human being. About my access to basic needs let alone access to the wider world. About what my expectations should be as someone with a physically disabled body. My anger is towards the society that allows and collaborates in such exclusion, dismissal,abandonment and suffering, and plugs its ears when thats protested about. But its impotent anger because this is just how it is. And not only for disabled people.

You're calling the kind of mindset/behaviour I object to "ableism" but I dont think its that simple. Because the questions you ask, questions I've asked, arent exclusive to the disabled community. The social support, universal access, adequately educated decision makers, protection from being despatched etc arent there for "anyone" in any social grouping. And the "nightmare" part of fearing an injury that leaves us dependant on the people around us and our wider society isnt the injury itself, its the knowledge that we'd be dependant on the people around us and society. Thats an entirely rational fear. And I dont think it can be countered by arguing that some,fortunate,people with severe physical disabilitys have a great life. Because that isnt the norm.

And its not the norm for disabled people in general to have the resources and enabling to not have their life screwed by their own disability. But we're also not outside the wider norm in having barriers and practical problems that just shouldn't and needn't exist.

And so when able bodied peoples life experience is of struggling to get their needs met,being frustrated by barriers in the way of their wants and often of feeling alone, floundering and unsupported, its entirely natural that losing the ability to move on top of that is a terrifying prospect. No one trusts theyd be taken care of let alone be enabled to live well and fully, because when/where has that "ever" been the norm for disabled people?




Nessie Siler said...

What I would like to see, is more people affirming we have the right to live, the same as an able bodied individual has. As you have eloquently addressed countless times, at issue is the belief among able bodied persons that life with a disability is inherently less. We know that this is not the case, and spend our lives affirming our truth.

We need to just keep talking till we're hoarse, and maybe someday we'll make a dent. Case in point, the ABLE Act. What do you think of it, William?