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Tuesday, July 10, 2012

Assisted Suicide: I do Have Reasons to Be Afraid

I consider myself to be a friend of Ann Neumann. This sentiment is shared by Ann. Our friendship is a testament to the fact that two people who vigorously disagree with one another can maintain a valued friendship. Ann is in favor assisted suicide legislation. I am staunchly opposed. We have engaged in good natured debate on this subject and more broadly about religion. We have found areas where we are in full agreement. For instance we are both extremely critical of the Catholic Church. We are both critical of pro-life groups and how they have latched on to disability rights opposition to assisted suicide. We each find the hypocracy of pro life groups distasteful. I suspect we also read each others blogs. I do not usually comment on her posts at the Other Spoon but I did respond to her post of June 11 "When the Dying Want to Die". I left a cranky comment and Ann addressed my comment on July 7 in her post "Quick Links: You Should Be Reading..."

I will quote Ann in full:

 read Bill Peace's comment to my prior post!  Bill and I are friends; he's disabled and I'm not; we disagree on a number of things--and not always respectfully, of course--but we keep the friendship going.  My response to his comment is:  What--legislatively, practically, pragmatically--does his experience as a discriminated member of society have to do with the legalization of aid in dying (or even removal of terminal patients from unhelpful treatments, etc)? 

I think I know what Bill's answer would be.  Discrimination is real and so is fear.  People confuse and conflate disability with terminality all the time.  I would never take him to task for how he feels.  Or over not seizing his autonomy from hypothetical others, including "pro-life" organizations that have worked very hard to recruit disabled individuals and groups to "their side"--with scary threats of a "culture of death" just waiting around to kill off the "abnormal."  But--and this is really, really important to my point--Bill's had to fight his entire life to make his own health care decisions, to convince everybody that his pain and his life are worth something to him.  Individuals wanting to do the same are no threat to Bill.

I do not know what Ann's experience with disability is. I suspect it is limited. In fact, I suspect I am her only friend with what society would deem a severe disability. By itself this is not unusual. In fact I often feel like an endangered species whenever I go out as I am always the only person with a disability present. Regardless, Ann's words fall flat for me. On the one hand she acknowledges discrimination is present and terminal illness is routinely confused with disability. On this we agree.  Yet I get a sense Ann is content to let me fight for my rights in isolation. I am afterall highly unusual. She also reduces such a fight to be about "feelings".  She would also "never take me to task" for how I feel. I can assure you my fight is not with "hypothetical others". My fight is very real. It involves baseless prejudice acted upon by real people who would like to see me and all the other cripples shut up and quietly and gratefully accept what society deems appropriate to give us. Real people consider me an expensive burden, an economic drain. Real people tell me "I would rather be dead than use a wheelchair". Real people knowingly oppose  disability rights. Real people go to great lengths to avoid compliance with the ADA. Real people routinely cut budgets and the first line item to go is always about access. Real people think I cannot read. Real people avoid me because they fear disability. Real people worry I am contagious. Real people with children grab their kids hand in fear and pull their child away from me.  I need not go on as you surely get the point. Bigotry is very real, compromises my life and has in fact destroyed countless lives. 

Ann asks what my experience with discrimination has to do with legislation for "aide in dying". First, the term "aid in dying" by itself is grossly misleading. It is designed to put people's mind at ease with kind and benign words. Do not be fooled, "aide in dying" is assisted suicide. Second, my experience with discrimination has everything to do with legalizing assisted suicide. Ann is not in an at risk population. I certainly am as a person with a severe disability. Thus we have a two tier system--two ways of dealing with people who want to die. For example, if Ann expressed a desire to die in the face of a routine but non lethal illness such a request would be met with staunch opposition. She would be required to see a psychiatrist and most likely be medicated. All would be opposed to Ann ending her life. If I expressed a similar desire with a similar non life threatening illness the response would radically different. Most if not all would think I have suffered enough and that my request is reasonable. No psychiatrist will be called. No prescriptions given. I would indeed be given aide in dying. The reason for this is simple as it is complex and deadly--my life is not valued. Third, based on my experience in 2010 with a life threatening wound, many assumptions are made about the lives of people with a disability. Those assumptions are made by health care professionals who are not free of bias. Most doctors have no experience with people such as myself who are paralyzed. In fact not a single hospitalist I met had ever treated a paralyzed man. Like many others, the hospitalists assumed I was single, unemployed, and lived in a nursing home. In short, they believed I had nothing to live for. Again, this highlights the two tier system. If I walked in the door would they have made the same assumptions? Not a chance. For me, these dangers are very real and if assisted suicide legislation is passed people with a disability will die. I may die needlessly.  

Fighting for one's civil rights and fighting for the right to die is a misleading analogy. The fight for civil rights is about the right to live free of baseless prejudice. That is what the ADA was supposed to do for me and millions of other Americans.  The fight for the so called right to die is inherently problematic. Unlike Ann, I see no reason for such legislation. Palliative care has advanced significantly and there is no reason why people should die in pain--this is often sited by advocates as the reason why we need assisted suicide legislation. This is patently false but polls well for groups like Compassion and Choices. In fact, a physician can medicate a patient to relieve pain even if death might occur. The reality is people choose to die in Oregon and Washington because their perceived quality of life is compromised. No one asks the very basic question, why, why is their quality of life compromised? By way of answering this question on the quality of life let me briefly compare my life to others with a paralyzing injury who have struggled or died. We all shared the same legal rights. We were all equal in the eyes of the law. We all had paralyzing injuries. Yet I live a rich and vibrant life while others such as Dan Crews has expressed a desire to die and Christina Symanski actually ended her life slowly and painfully. Why are our lives so radically different? Some may believe my analogy is flawed. I am a paraplegic while Crews and Symanski were quadriplegics. The difference is significant but not enough to express a desire to die much less act out on it. For me, the difference is the social response to disability. This in turn gets me back to the two tier system. It is present even within the minutia of disability itself. While my life is not valued I suspect the life of a quadriplegic is valued even less than my life. This is very hard for me to fathom and makes me wonder just how much can we devalue people with a disability? 


Catherine said...

Yes, you do have reasons to be afraid. As does any who are not strong and have someone to make sure that what is wanted by the individual is what takes place. Anyone with any situation that makes it beneficial to others, to be dead, is at risk, high risk and should be afraid. Even with assisted suicide being strictly illegal, anyone who is a perceived burden to others who have any decision making input could be on the the side of life threatening decisions. And, yes, I have personally seen this, and it is well supported by most people who have strong ideas on who should live.

On the other hand, Bill, you are sadly mistaken if you think medical technology and skills have eliminated horrible pain. I have seen children crying in pain with no solution. Adults writhing and begging to be put out. And all because pain alleviation would increase the chances of killing them, it cannot or will not be used. There are situations when people simply do not want to live that way; the pain is too great, and to say, "too bad" which is about what happens here, is a terrible, terrible thing. My father died in great pain over a period of time that ripped his guts out and leaves a pain to those of us who loved him to this day. He was 52 lbs when he died and had everything we could get for his pain. I know too many kids with end stage neuroblastoma, and many of them die in a pain that leaves those who love them in a whole other kind of pain for many years. So please do not presume that medicine can or will take care of the pain. To do so is often too directly bringing this discussion full circle.

But someone, like my children's godmother, my dear friend who chose to die rather than go on a ventilator or go further in treatment for her ALS? She was a dynamic woman and a powerhouse in business and much beloved. But she firmly made her decision and etched it in legal stone as to how she did not want her life to be and hated every second of her time disabled. Yes, she saw the psychiatrists as her family wanted her alive longer, She held firm. She died some months ago, and what does assauge our pain is that she full made that choice. Her only wish was that she could have gone sooner.

william Peace said...

Catherine, Yes, any person that is not self aware and able to direct their own health care is at risk. This includes many people far beyond disability. Indeed, the people most at risk are the elderly.
As I understand pain management today, there is no need to suffer. I will acknowledge though some people such as yourself would disagree. As far as I know in all states medication can be given for pain relief even if death occurs. I do agree that kids are treated differently. Health care for children can be extremely aggressive--I know this as I experienced it first hand and without question I suffered horribly from pain as a child. But this was ages ago when pain management was primitive at best.

Alicia said...

Great post, I also think people don't understand that severe pain is not incompatible with a good life, I am always in physical pain, I know people that live with more extreme pain and we still want to live, why is that such a impossible idea? There are many ways to live, life is not so limited, disabled people and people with chronic illness can be more creative than non-disabled people in our lives and ideas about life but we must be allowed to live fully, to receive the necessary care and help when we want to die. Of course suicide prevention for those with more severe mental illness is very problematic, we are also part of the disability community and our lives are also not valued, all possible sides of this are extremely complicated and shows that society doesn't want to accept any kind of disabled person.