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Tuesday, July 29, 2014

Compassion and Choices: Oblivious, Rude or Misleading?

As I have been packing up box after box I have been thinking about a disturbing video created and widely disseminated by the pro assisted suicide group Compassion and Choices. Frankly I found the video shocking. It is a perfect representation of why I find the debate concerning assisted suicide so frustrating. For many years I have sought to find common ground between those who oppose and those that support assisted suicide legislation. I think my quest for common ground is hopeless because two well worn stereotype exist. First, there are people such as myself. I am a self righteous crippled bastard with a chip on my shoulder who denounces and attacks others who want to control the circumstances surrounding the end of their life. In particular, I want other cripples to suffer just like me and go out of my way to attack others who simply want a good death they can control. The second are the reasonable scholars and average citizens who merely want to control the end of their life. These people want to eliminate suffering for the terminally ill. Such advocates wear buttons that state "My Life, My Death, My Choice".  The idea that ending one's life is a tight and sacrosanct.

I want a nuanced debate about the end of life. I want to witness a national debate that addresses how we approach the end of life. No one wants a human being to die alone and in pain. Sadly, this happens all too often. In the ABC-CLIO Companion to the Disability Rights Movement Fred Pelka wrote disability rights advocates "insist that decisions about suicide, just like decisions about aborting  a disabled fetus, should not be made based on stereotypes about the quality of life with a disability. Rather than fight for their right to die, they instead prefer to fight for their right to live with dignity and independence".  This is exactly why I am upset about the Compassion and Choices video.  They are utterly reliant on a disability archetype: disability is bad. People with a disability live a diminished life. People with a  disability are suffering. People are dying in pain because of unbalanced bitter cripples like me. The result of this faulty line of reasoning is the below Compassion and Choices three and half minute "celebration" of the ADA.




What does Compassion and Choices do? Find the tiny minority of people with a disability who fit the stereotype described above. Compassion and Choices exploits people with a disability and when a person such as myself objects I am dismissed as a crank. The fact is we humans are very social. We live and die in a social setting. We do not die in a social vacuum. Our deaths have social meaning. We typically die in a hospital or nursing home: both are total institutions and feared. In terms of end of life care, symbolically a person with a disability represents a reminder of the frailty of life. As such, we are an affront to others without a disability. We are feared. We are an ever present reminder that disability can be acquired at any time over the life cycle. Compassion and Choices and other  advocates for assisted suicide exploit severely disabled people. The script never changes just the names. For the skeptical I suggest you read about Larry MacAfee, David Rivlin, Christina Symanski, Tim Bowers, Dan Crews, and many unknown others. The all important question to me is why. Why do people with a disability want to die? It is because those that live with a  disability are discriminated against. Yes, 24 years after the ADA was passed into law ablism is rampant. The ADA has not resonated culturally nor has it ameliorated  the grim reality of life with a disability. Most people with a disability live in or on the edge of poverty. Most are unemployed (70%) and uneducated. A shocking number of people with a disability are socially isolated in the extreme. Physical and mental abuse are rampant. As I said, life with a disability is not easy.

Sara Myers and Dustin Hankinson are new. The names change but not the methods utilized by Compassion and Choices. How others fail to get this is a mystery to me. When I see a person with a disability or an elderly person with significant physical or cognitive deficits I think they are hard asses. Those people have a strong will. Life was likely not easy but they endured and I hope thrived.  I imagine what their life is like. How did they adapt and what can they do? I only consider what people are they capable of doing and dismiss what cannot be done.

To end, as I move around my home I have found myself thinking about the buttons worn by assisted suicide advocates are ironic: "My Life, My Death, My Choice".  My, my, my in triplicate. The word narcissistic springs to mind. Could it be people are that selfish? Could people desire autonomy and control that much? "Mine Mine Mine", the childhood refrain, has been repackaged by adults who are afraid of disability and death. I hope I am wrong for I believe all human beings lives have value. All people have the right to live. That includes a baby taking his or her first breath to the elderly person taking their last breath. Death is not a right it is physical inevitability. It is life that holds meaning.

5 comments:

Moose said...

Uuuuuugggh!!!

As you probably recall :-) I am pro-assisted suicide for those who are facing death and want it.

However, this 'commercial'... UGH!

To me, it's not so much a "disability is BAAD" message. The disabled people in the video seem to talk more about the right [whether it is used] to end their own life more than wanting to escape their illness or disability. Note the one woman who says, more or less, she'd like to have the choice even if she wouldn't use it.

But the voiceover. I don't know WHAT they were thinking. I suppose they were going for "compassionate," but what they got was pitying and cloying. The voice is so whiny I kept expecting Sally Struthers to come out and start moaning about the "poor, suffering people."

I think if the voiceover were more dry and factual it wouldn't come across as "We have to help these pooooor people!" and more about people making their own choices. The current noise is disgraceful.

Michael Watson said...

As is so often the case, you have addressed the issue well. End of life issues are so complex, and often difficult. For most of us, adequate support and pain control will be enough. Yet there are situations that are truly unendurable. The question is: how do we navigate end of life care so each of us has the best quality of life possible?

gail demasi said...

Really fine job addressing the major point - all life has dignity and value and death is an inevitable part of life and must not become the new selfie platform.

william Peace said...

Moose. Yes I know you support assisted suicide legislation. When we live in some sort of utopian society free of poverty and social inequality where all humans are equally valued then and only then could I support such legislation. We both know that day will never come. I wish I knew where the idea death is a "right" originated. I find this very odd. As to your other points, I agree the voice over was dreadful.
Michael. I am not sure what your use of the word "unbearable" refers to. If it is unbearable pain, based on my reading of the medical literature pain can be ameliorated at the end of life. Again, a generalization. I would suggest and the grossly inadequate reporting from WA and OR reveal people choose to die because they fear losing their autonomy and independence. I am in full agreement that we desperately need to support the highest quality of life for all people before they day. What that quality of life entails needs to be widely and seriously considered by all humans.

william Peace said...

Gail. I love that line "the new selfie platform". You really nailed it!