I woke up this morning and as usual looked forward to reading comments about my latest post. I was pleased to see Elizabeth and Phil, two regular readers, as well as Catherine left comments. I was a bit taken aback by the comments. Elizabeth believes my views are as "extreme" as those I "excoriate". She also thinks the disability community response to "mercy killing" and "euthanasia" is "horribly simplistic. I urge you to read the comment Elizabeth left in full. Phil also took me to task. He wrote that he does "not believe that when a person chooses to die that he or she contributes to the devaluation of the disabled or the very sick". Death is a right in Phil's estimation--a popular sentiment or belief in American society. We are rugged individualists one and all. Both Phil and Elizabeth if I understand them correctly believe death should not be feared--that is a part of life.
I tried to address the points above without much luck in a long reply. A good friend suggested a post rather than a reply was in order. As usual, my friend was correct. So, before reading further look at the comments left by Catherine, Elizabeth and Phil.
It was not my intention to "excoriate" Mr. Johnson or any other individual. I do my level best to avoid personal confrontation. Mr. Johnson has the right to express his views. I thought I treated his views with respect, the same respect I would hope he would treat my words with. I was in no way attacking his character or desire to die. I had no interest in "excoriating" him or any other person with or without a disability. To do so, would be utterly pointless and counter productive. As I have attempted in the past, I tried to use Mr. Johnson's as a spring board to highlight the gross inequities that exist when people with a disability access the health care system. Simply put, the health care system as currently constructed is hostile to people with a disability. Yet Elizabeth is correct that thousands upon thousands of people have worked tirelessly for disability rights. In the twenty plus years since the ADA was passed American society is more accessible physically and socially. This is a given. Much heavy lifting still needs to be done however. And like it or not, lives are at stake. My life and Mr. Johnson's life are at stake. I suggest Elizabeth and others read my article, "Comfort Care as Denial of Personhood" in the Hastings Center Report. A physician strongly suggested death was preferable for me. The physician could make my death happen. This did not take place in the decades before the ADA was passed into law protecting my civil rights. This took place in 2010 more than twenty years after my civil rights were supposedly protected. This incident shook me to the very core. It shattered my trust and confidence. It took me a long time to come to terms with the fact a highly educated physician sincerely believed my life had no value. My death was the preferred course of action. Perhaps the physician believed in euthanasia. Perhaps he believed he was being "merciful", that I had suffered long enough. Here I will agree with Elizabeth--there was nothing simplistic about the thought process. The views that led up to this incident are complex and culturally laden. They did not take place in a void. They took place in a well respected hospital and both of us brought much cultural baggage to the exchange. I believed my life had value while the physician felt it had none. Our respective views were formed well before the incident took place.
Given the above, I vehemently disagree with Phil comment that he does "not believe that when a person chooses to die that he or she contributes to the devaluation of the disabled or the very sick". Phil is correct in that we do have the ability to "adapt" or chose not to "suffer" or to not be alone or decide a life is not worth living. I do not question this. We are entitled to our beliefs. I do question how such decisions are made. I do question whether we are really given a real choice. Disturbing ethical examples abound. For instance, a woman I knew became pregnant recently and she had tests to determine if her child would have Down Syndrome. The test was positive. She was given the results and a business card with a scheduled abortion date. Is this really a choice? Statistics demonstrate well over 90% of women choose abortion over having a child with Down Syndrome. To me, this is perilously close to a form of modern day Eugenics. Does using the word Eugenics make me an extremist or do I hold a simplistic viewpoint for using the word? I think not. Let me use one more example. A young man or woman in their early twenties is in a car accident. Suddenly they must learn to adapt to a high level spinal cord injury. How will this person adapt or will they choose not to adapt? Will this young person be told about sip and puff power wheelchairs and the world of adaptive sports? Will this person meet another well adjusted high level quadriplegic who is married and has children? I doubt it. I think it is far more likely this person will be shipped to a rehab center and quietly sent to a nursing home weeks or months later. Perhaps this person will become like Christina Symanski who chose to die. Again, I ask the question why. Why do some people choose to die? Why are some encouraged to die? Why do we have the resources to end the lives of those with a disability and in fact laud such people for their courageous actions? Meanwhile people like me, those that choose to live life to the fullest encounter discrimination decades after the ADA was passed. People like myself, disenfranchised and without power, are perceived to be an economic burden. Theoretically I share the same civil rights as others but I do not live in the world of theory. I live in a world that is hostile to my inclusion. I live in a world where I am repeatedly told I am a difficult person. Why am I difficult? I am difficult because I assert my civil rights. I point out injustices that make others uncomfortable. I am not silent. I am an uppity cripple. Here the obvious allusion is to so called uppity niggers that asserted their rights, civil rights no person would ever question today. Well, I am not near there yet. My civil rights are open to debate.
In all seriousness, it is very hard to express how hard it is for me and others with a disability to simply leave our homes. I know I will be stared at. I know I will encounter needless architectural obstacles. I know people will say demeaning things to me. Worse yet, none of these people that thoughtlessly violate my civil rights consider themselves to be bigoted. They are just "curious", "interested" or want to share their thoughts me. No consideration is given to my life, the inability to ever fit within the mainstream. I am public property. My existence open to good natured debate. Maybe this makes me an extremist. Perhaps Elizabeth is correct. I do live an extreme life. People with a disability are socially isolated. People with a disability are unemployed in overwhelming numbers. People with a disability are far more likely to be uneducated. People with a spinal cord injury like mine are less likely to marry and have children. People with a disability often cannot access the health care system. People with a disability are likely to live in an institution. I could go on but my point is clear. I do in fact live an extreme life.