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Thursday, March 31, 2011

Assisted Suicide: No Assistance Wanted

I do not want to die. This sentiment hardly makes me unusual. What does make me different is I have a legitimate worry. I worry someone will decide to kill me. I do not think someone will kill me maliciously, for spite, or hate. I worry someone will kill me with kindness in their heart. I am not paranoid. I know more than a few other people with a disability that have the same worry. Like it or not, people with a disability are not valued. Our lives are deemed tragic. Social expectations are limited at best. No one expects us to have a job, be a parent, or live a vibrant life. No, our role is to get well. For me, that means I should spend all my time thinking about walking. I should go from doctor to doctor to make this happen, subject myself to experimental stem cell treatment. If I did this I would be lauded as courageous. I consider efforts for cure to spinal cord injury an abject waste of my time. I can happily leave that quest to medical researchers. Instead, I rail against social prejudice and the stigma that clings to disability 20 years after the ADA supposedly made me equal to my bipedal peers. Of one thing I am sure, in daily life and in particular a hospital setting I am very far from equal.

I have been preoccupied with end of life issues since I read an article by Neil Shapiro in the Monterey Herald entitled “Right to Die Gives Dignity to the Disabled” (3/21/11). What strikes me as remarkable is the universal social support people with disabilities receive if they express a desire to die. Why is help to die given so willingly when social supports that are needed to live a full and equal life with a disability despised. Do not doubt me on this. Think for yourself. Read about draconian budget cuts sweeping the nation that adversely affects people with disabilities. Better yet talk to a parent of a child with a severe disability. They can regale you with horror stories about how they have to fight tooth and nail for the most basic support. Talk to a person with a disability who has no job or health insurance and as a result cannot afford a good wheelchair or cushion to prevent a pressure sore from developing.

Many disability studies scholars have explained why people with a disability are not valued. They argue knowledge is socially situated and has inherent logic to its members. Identities are socially constructed and fit into the aforementioned socially constructed knowledge. Certain bodies, disabled bodies (my body) are excluded from dominant social ideologies. The disabled body is inherently flawed. The person with a disability must be in pain, physical or mental. The person with a disability must be unhappy with his or her flawed body. The person with a disability has thus lost their dignity. The person with a disability has lost control and independence. This, for Americans, is a fate worse than death. So it makes sense to put the poor bastards out of their misery? Ah, no it does not. What the above reasoning utterly fails to consider is why. Why are people with disabilities shut off from routine social interaction? Instead of addressing this vexing question we have people like Neil Shapiro who out of the kindness of his hearts wants to help people with a disability die. He also thinks Dr. Kevorkian was a “quirky Michigan doctor”. Shapiro wrote:

“It seems to me that the right to decide that one has suffered enough, that whatever joy remains in life is outweighed by that suffering and that it is time to die, is one of the most fundamental of human and civil rights. Why should one's neighbors be able to dictate that one should not be able to terminate one's unbearable pain? But unless we follow Oregon and Washington, we may never have this right.
There is a great irony in all of this. Those who are not incapacitated are physically able to commit suicide, and need no assistance. Those who require, but are routinely denied, that assistance are the disabled. We spend billions of dollars making sure that they have the same right as the rest of us to shop, visit the beach and the like, but we deny them the right to die with dignity. Go figure.”

Where do I begin? If it were up to my neighbors as Shapiro puts it, I would have been denied an education. I would not be able to get on a bus or plane. I would not have a job or be father. We people with a disability had to fight for these fundamental rights. Even though we people with a disability are supposedly equal I have never felt that way—ever. The idea of equality for people with a disability is illusive at best. As for the billions of dollars spent on access, which Shapiro seems to resent, has saved countless lives, mine included. But just because we spend money on access and inclusion does not mean we value the people who are supposedly equal and included. When it comes to disability rights, as a society we merely pay lip service to these inherent civil rights most take for granted. We do not in reality accept the presence of people with a disability. If we did I would not be forced to enter the back of so many buildings or have to call ahead to ask about access on a regular basis. Simply put, the disabled body remains unwanted and is perceived as defective. Worse yet, the disabled body is costly. Hospitals remain grossly inaccessible. Efforts to be inclusive are often ignored or belittled. The message society sends is not subtle. There is a word that comes to mind—oppression. Add in an illness, social isolation, dependence upon others and the logical leap to thinking my life is not worth living is dangerously short. Thus it is ever so easy to write one wants to control the way we die and the circumstances surrounding death. This desire is understandable but in my estimation dangerous for people with a disability. We need to take a much closer examination of the pros and cons to assisted suicide. When we do sentiments such as those expressed by Shapiro will be deemed not only dangerous but simply wrong.


Feisty Kitten said...

I agree, and I think its laughable that suicide is considered a crime, and is fought against, but assisted suicide for the disabled is more socially acceptable. As if an able bodied person "has everything to live for" and we don't. What makes me laugh the most, is that in spite of my disability I live a fuller life than most people I know, and I'm brilliant, and with my mind I have potential far greater than many of my able bodied peers.

Eric Fischer said...

The thought that assisted suicide is being pushed more and more as an agenda, already accepted in my country of birth, Holland, where they actually "euthanize" babies who are born extremely compromised or suffer conditions characterized as terminal, despite proof to the contrary, where the idea of "a life not worth living" is already accepted I want to rage against the inept technocratic intellectuals who think that logic has some kind of uber moral standing. All these people who are coming out and yet in insidious fashion altering our sense of human worth, "helping" others form decisions over life and death are a brougue of nefarious ethics.

Helena Sue said...

Hi William,

I stumbled across your blog by accident and found your writing intriguing.

You wrote about the regular isolation from social activity that accompanies disability. What action do you think the public should be taking to fight against this? Personally, what would make you feel better?

william Peace said...

Feisty, You comments reinforce that disability is primarily a social problem. The general perception is that disability is inherently bad and limits one's life. The limits however are socially imposed in the form of stigma, lower expectations, and lack of access to resources others take for granted.
Eric, The concept of a "life not worthing" is subjective in the extreme. When I was paralyzed in 1978 high level quads were allowed to die--the belief being life was not worth living. Today, a person with the same high level sci injury is treated and most go on to lead a rich and full life. I truly fear those that see my life as not worth living. How to rail against this is another issue.
Langue, Welcome! Yi=ou sure ask a hard question. I would suggest that the public thinks disability issues and rights are not relevant to them--it is a problem that does not affect them. This is patently false. It is in the best interest of every American to support disability rights. Hence disability rights should have mass appeal. This mass appeal is utterly absent. What can you do? Well support and defend disability rights when the issue comes up. If you are at a school board meeting fight for physical access when it is the first line item cut. Ask about access and when it is absent ask why? If you see a person's rights being violated support them. In short, be vocal, take action do your part when appropriate.

Anonymous said...

Making suicide against the law is illogical. What are you going to do to the people who break this law by committing suicide- arrest them? Put the cuffs on them & read them their rights? If they've succeeded, then they're dead, & there's no point in trying to prosecute them, because you know they won't do it again- they won't do anything again- they're dead. If they're not dead, then they haven't broken the law, and thus can't be arrested for it. Either way, this law doesn't work. It has no functionality as a piece of law. Therefore, it ought to be abolished, since it is worthless. By logical extension, laws allowing assisted suicide are equally worthless and should not be passed. Why? Besides the fact that it's bad law, due to a complete lack of logic, and bad law shouldn't be made, these laws do not prevent suicide but carry a high potential for abuse, as Bill has so eloquently demonstrated. Speaking as a person from a state without any pro-assisted-suicide laws, it doesn't mean that people here are prevented from it. That is most untrue. My own grandmother committed suicide using pills given by her doctor & a 12-gauge shotgun. My point, and I do have one, is that people who really want to die are going to commit suicide regardless of whether it's illegal or not. If a person is sufficiently determined, like my grandmother, than nothing and no one can prevent them from committing suicide, therefore any law against it would be illogical, and a law supporting "assisted suicide" carries such a high potential for abuse as to be impractical, & impractical laws should not be passed. The bottom line, for anyone who's actually read this entire comment, is that so-called "assisted suicide" laws are illogical, impractical, and can be used far too easily to deprive our citizens of their legal civil rights, based on mere physical differences, the discrimination against which was outlawed by the ADA in 1990, so such laws should not be passed, because they violate the human rights guaranteed by the Constitution as well as those ennumerated by the International Declaration of Human Rights proclaimed by Amnesty International and accepted by the the United Nations in 1948.

sanda said...

Thank you. (I got here via NotDeadYet) I think the word "oppression" is perfect. I have come up with a word and I hope others feel free to build on it.
The word is disabilophobia - the fear, loathing and hatred of disability and people with disabilities. It fits on a list, such as: xenophobia