Are My Views Extreme?

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.

Choosing to Die has Ramifications

Last night I read an editorial in the Spokesman-Review by Curtis Johnson. Mr. Johnson has ALS and it is rapidly progressing. He will die in the near future and he is not pleased with the Death with Dignity laws--see "Put Real Dignity in Choice to Die".  There are two thrusts to Mr. Johnson's editorial. First, the fact the lethal prescription in the state of Washington must be self administered which in Mr. Johnson's opinion renders the law useless for those who need it.  Mr. Johnson noted: 


"This leaves patients with the choice of ending their lives prematurely or crossing that threshold where they won’t be able to, thus damning them to a lingering end of dependence, misery and pain.  Left with this choice, I must go with prematurely ending my life."


The second point raised by Mr. Johnson concerns organ donation. He believes his organs could help others who will die waiting for a life saving transplant. He notes:


"Although my motor neurons are wasted, only my muscle tissue is affected. Otherwise I’m a perfectly healthy 55-year-old male. I exercised daily. My blood pressure is still 110/70, and my heart rate a steady 70. I have perfectly functioning lungs, kidneys, heart and liver.  There are candidates out there who could use my organs to save their lives. But even as a living donor, I am excluded from donating anything".


For those unfamiliar with assisted suicide legislation, likely the vast majority who will read Mr. Johnson's editorial, will be persuaded by his words. Mr. Johnson taps into very basic assumptions about disability and the end of life. For example, disability is a fate worse than death and that death is preferable when faced with a fatal condition like ALS. Mr Johnson wrote:


"I have become trapped inside a motionless body, a living mummy, a burden to those around me. The list of things I can’t do grows longer each day. My core is almost gone, and soon my arms and legs will become completely detached. Most of my muscles visibly vibrate 24/7.  All that constant contraction causes perpetual fatigue and tension headaches. My doctor tells me ALS is a painless disease and that there is no reason to consider suicide. Maybe I’m just a wimp. 

I am a social creature by nature, a party lover, invariably the last to leave. Now that my speech has lost its volume and become incoherently garbled, I find myself irrelevant in social situations. This isolation is every bit as painful as the physical pain and frustration imposed by ALS. Now, too, I am losing power in my arms and hands such that I type with one gnarled index finger and can no longer even pick up my iPhone."

Mr. Johnson is not a wimp. Mr. Johnson, like all of us, was not prepared to learn how to adapt to his condition. But adapt we do. In fact the vast majority of us when faced with a life altering disability or  those who are forced to deal with end of life issues adapt. Some struggle for years with Depression while others rapidly move on. Some are ruined financially due to medical bills that insurance refuses to cover. Some die gracefully. Some rage at death and become embittered. Some people with a disability adapt with grace and beauty. Very, very few choose to die--they are the exception not the rule. And here is where I am left angry. Why is it that only people like Mr. Johnson who want to die are given support. Why is it that paralyzed people that want to walk are lauded while those who adapt to paralysis and want adaptive devices to empower them are perceived as a social burden or an economic drain. 

When I read Mr. Johnson's editorial here is what I thought: why has no one spoken to him about brain scape or the myriad of ways he can communicate. I have met many respirator dependent quadriplegics, some with ALS, who lead rich and rewarding lives. Mr. Johnson can continue to have a rich and vibrant social life. While his condition is indeed fatal I see no reason why he cannot enjoy his life in the here and now. His words above are based on an implied social fallacy: life with a disability is inherently less, it is an existence that lacks dignity. People with a disability are not social beings. People with a disability cannot or do not socialize and are a burden on society.  No one delves into the why behind this faulty premise. For example, I do not visit any of my friends homes--friends who do not have a disability that is because I cannot enter their home. Steps abound as do needless architectural barriers at work, stadiums, office buildings, hospitals, athletic facilities, libraries, and the list goes on and on. This is not a medical problem this is a social problem. American society does not value the existence of people like me and Mr. Johnson. The physical environment is built specifically for those that are bipedal. Access issues are an after thought--something that must be included because the law states it must be so. Such access is not valued--it is merely a box that must be checked off.  

As for organ donation, Mr. Johnson's words sent chills down my spine--the chills only went to T-3, my level of paralysis and sort of wander down my side (a very strange sensation). Mr. Johnson's words are simply dangerous. What would happen to any individual with a high cervical spinal injury and more generally any spinal cord injury? Would this person become the ideal organ donor? Imagine if you were suddenly paralyzed, had never met a person with a spinal cord injury and knew nothing about disability. What would you think if you were told you will be paralyzed for the rest of your life? Would you be happy? Hardly. What if news of paralysis was followed by "you can be an organ donor and never live with paralysis". I have no doubt many would choose to donate their organs and die. This decision would be one based on fear and ignorance. Yes, disability may indeed be a fate worse than death. None of this even broaches the economic implications of long term disabling conditions. Simply put, it is expensive to be disabled. The other day I figured out that in the last 35 years I have spent nearly $25,000 on Roho Cushions alone. I shudder to think of what I have spent on basic necessities like catheters, wheelchairs, tires, inner tubes, medications, home renovations etc. Being paralyzed is an ever present economic drain. Would some choose to die rather than go into debt, declare bankruptcy and be forced to live in a nursing home? Worse yet, would organ brokers seek out paralyzed people. As Mr. Johnson notes our organs are perfect. Perhaps this sounds far fetched--too much like Soylent Green the classic science fiction film. I am not so sure. I am after all told once or twice a year by a total stranger that they would prefer to be dead than use a wheelchair. Don't take my word for it, Dr. Phil just had a show in which he advocated parents should be allowed to kill their disabled children. This was deemed "mercyful".  Frankly, I fear such mercy. I truly fear for my life when I enter an institution such as a hospital. I am fearful not of death but some "caring soul", a "professional" who thinks I have suffered enough.