A few days ago the New York Times published an article on its front page, “Aid in Dying Movement Takes Hold in Some States”, by Erik Eckholm. Link:
http://www.nytimes.com/2014/02/08/us/easing-terminal-patients-path-to-death-legally.html?hp&_r=0 As an opponent of assisted suicide, I cringe when I read most articles published by the NYT that discuss end of life issues. I bemoan the lack of journalistic rigor, questionable ethics, and sloppy language used by Eckholm and many others who have published articles in the NYT on end of life issues. For the last week I tried to ignore what Eckholm had written. Yet I was and remain angry. I am not angry at Eckholm or the NYT. I am angry for the people who read this article and thought it was “fair”. There was nothing “fair” about this article. My anger does not stem from disagreement. I am happy to engage those I disagree with and do so on a regular basis. What angered me was how grossly one sided the article was. Those unfamiliar with the heated debate surrounding assisted suicide will completely miss the fact the article and author are grossly biased. For instance, Eckholm wrote Compassion and Choices, the leading advocacy group for assisted suicide, believes “giving a fading patient the opportunity for a peaceful and dignified death is not suicide”. Out of context this appears to be a given. We all have the right to die with dignity. We want to insure people in their final hours have a peaceful death. We all want a compassionate end of life. We all care about the elderly, disabled, and terminally ill. We do not want these people to suffer. Eckholm presents assisted suicide as being about the milk of human kindness.
Stop the emotional gravy train. Think, really think about the implications of assisted suicide. Dig a little deeper, read a few articles by ethicists, and it will become very clear death is a complex subject. Few die at home surrounded by loved ones. Most people die in a hospital. Given this, the end of life issues cannot be constricted the individual level. Death is part of the health industrial complex. We do not die in a social vacuum. We die in institutions called hospitals or nursing homes. Articles such as the one by Eckholm rely heavily on the individual and anecdotal evidence to promote assisted suicide. Thus I balk when Eckholm presents Compassion and Choices as the sole arbiter and advocate for a compassionate and peaceful end of life. Those unfamiliar with Compassion and Choices and the complex issues families face when end of life approaches are easily swayed by emotion. Who could be opposed to good end of life care? Only religious zealots or bitter crippled people like me who want to impose their suffering on others (these words are often thrown in face). I am told “just because I made a decision to live my life with a disability does not mean others are capable or desire to the same thing”. Following this line of logic, I am a narcissist who does not care about human suffering. We all know people with a disability suffer. I am suffering. It is what we crippled people do. I do suffer but do so because of the deep stigma associated with disability. My “suffering” is socially created by ingrained disability based bias and bigotry. The sad fact is most people without a disability, and certainly the vast majority of those working in the health are system, cannot imagine my life and the life of all those with a disability is valued. We crippled people lead a good life in spite of the hostile social and physical environments we must navigate.
Eckholm and others who advocate for assisted suicide conveniently ignore the above. Eckholm follows a well worn script. They typically follow a three step process. First, quote an obscure religious leader who is opposed to assisted suicide. In this case Eckholm quotes Archbishop Michael J. Sheehan of Santa Fe, NM who stated “the church teaches that life is sacred from conception through to natural death”. Conception nor natural death are not defined but the suggestion is such a notion is based on religious orthodoxy and not science. In addition the Archbishop ominously foresees assisted suicide legislation could have “dangerous consequences”. These is no mention of a single non religious disability rights organizations that also points out the inherent dangers to assisted suicide legislation. Step two, find a person with a disability or someone facing the end of his or her life that can be exploited and used to push for assisted suicide. Paint a grim picture of this person’s perceived quality of life. In this case Eckholm used Robert Mitton, a man “with a failing heart”. Mr Mitton does not want to endure another brutally painful surgery. Colorful or overly emotional language is used to derail sober analysis. For example, Mr. Mitton was told by doctors “the only way to take care of this is to rip me open again and that’s not what I’m going to do”. Mr. Mitton, cue the melancholy music, wants to die in peace. Mr. Mitton believes a dignified death “should be a basic human right”. Step three, quote someone from Compassion and Choices. In this case it is the president of Compassion and Choices Barbara Coombs Lee who maintains “there is a quiet, constant demand all over the country for a right to die on one’s own terms”. The conclusion is not hard to reach: who in their right mind could oppose assisted suicide?
The emotional and anecdotal approach to end of life care or so called aid in dying is presented in a way that appears to be fair. The formula concocted and utilized by Eckholm and others does not permit a person such as myself or any disability rights groups for that matter to enter into the discussion. Systemic social analysis is effectively derailed. We crippled people, however, upend the legal and social band wagon. Our existence, an existence we value, causes too much discomfort. Worse, we people with a disability are articulate and organized. We point out in no uncertain terms that our lives are worth living. We point out all lives are worth living. We are not religious fanatics. We are merely human. We crippled people are human as are the elderly and terminally ill. I am human. Our bodies are different. As a result of our bodily difference, symbolically we represent a threat to others—typical others who fear death and disability. Let me tell you there is nothing to fear. We will all die. This is a given. Death is not a human right. Death is the fate all who are born will inevitably face. Human rights are about living. Living these days is not easy. Not when social supports for the disenfranchised are cut to the bone. It is not easy to live when food stamps are cut and too many people cannot afford to pay rent and eat. It is not easy to live when one cannot afford health care insurance or pay for prescribed medications. If we are going to have an emotional discussion let’s discuss why life is so hard for so many. Let’s discuss what drives a human being to believe their life has no value.
6 comments:
Since I gave up TV 15 years ago and mainstream press about 5 years ago, I have slowly been relieved of some acculturated mainstream biases. And, more often, become aware how many such biases I still harbor.
I wonder how we can retrain mainstream journalists to reduce the ableism in their writing? (also the racism, sexism, ageism, religious bias, and on and on).
I wonder what it would take to get an editorial by William Peace into the NYT with equally prominent placement?
Second Summit, I have tried for years to get the NYT to publish an editorial. I never came close. I am far from alone. Many other scholars and activist in the disability rights community have tried and failed. Te only newspaper I can recall just one exception. The Wall Street Journal published an editorial Stephen Drake and Diane Coleman. To get an editorial in the NYT would require a social revolution or act of God. Maybe both.
Your concluding paragraph makes many excellent points. However, I don't see the movement for greater access to assisted suicide as merely an expedient to make up for society's deficiency to provide greater support to the disenfranchised (e.g., cutbacks to food stamps, health insurance, etc.).
I agree that lives made miserable by an indifferent and callous society can make the option for assisted dying more attractive, and that's indeed a very serious problem, but the death with dignity movement should not be thwarted because of it. There's a danger of creating a false dichotomy by conflating these issues.
Stephen, I did not mean to imply the only factor leading those to seek assisted suicide was due to the lack of social supports. A multitude of factors drive a person to conclude his/her life has no value. In my opinion the so called death with dignity movement is an extension of utilitarian philosophy as well as the acceptance that health care is a limited and valuable commodity. We both know health care is exceptionally difficult for people with a disability to access and that medical institutions in the broadest sense of the term are hostile social environments culturally and physically. This creates a social vortex and the message is not subtle: when one is no longer productive or autonomous one's life has no value. One thus becomes an expensive burden in capitalist society.
I recently was sent here to your blog when engaging in a discussion elsewhere online about assisted dying. I do agree with you that it is not acceptable to euthanize the disabled. I do not support assisted dying for someone who is not terminal and isn't in uncontrollable pain. What concerns me about the entire issue and causes me to want some form of assisted dying is the harrowing, frightful, and utterly unnecessary 'bad deaths' many people are forced to endure.
My Grandmother, who raised me and meant more to me than anything in the world, took four years in a nursing home to die. She was terminal; she had COPD, diverticulitis, ulcers, dementia, bone-on-bone arthritis throughout her body and was 70 years old (when she went to the nursing home for the last time). On the rare occasions she was lucid, she would beg us to kill her. She would scream in pain when the nurses moved her. She finally died after four years of this, crying and confused. I was there. I am not a religious person, but the amount of agony that lady suffered for so long was a sin. If there is a hell, I deserve it for letting her suffer that. I really wish she hadn't had to go through that, that there would have been some other way to 'assist' her in passing when she so desperately needed to go.
This is what I think we, as a society, need to avoid. There needs to be some option, other than starving or dehydrating our elderly to death (which was the only option they gave us-- pull her tubes or this keeps going on, and I could not get three of my six aunts to agree with me). My Gram had built a tolerance to pain medication, too. By the end, even the strongest drugs didn't touch her pain, and she was allergic to several pain med categories, too. She has been gone for 12 years now. I'm only 35 and already have a deep-seated terror of dying the same way when I am older.
Sorry this is so long, but how do you feel about this issue? I've read back pretty far in your blog (back to February so far), and I haven't seen you address this specific issue on assisted dying. I respect your opinions on it and would love to know what I can do or a post I could point to to address the truly terminal and in agony. So many people talk, but you are an actual scholar with the education and experience to point me to the truth on it. How can we ethically hasten the deaths of the truly terminal and in pain? Should we? If not, how can we avoid prolonged suffering?
Thanks in advance for your time.
Chopsy,
Thank you for your thoughtful comment. I am sorry your grandmother had an end of life experience that was so terrible. Your family's experience with your grandmother is all too common. This is simply unacceptable. Most people want to die at home but very few are able to do this. The sort of change needed to end of life care is not to be found in assisted suicide laws but rather a prolonged and detailed discussion of end of life care. I agree VSED is not the answer that lobbyists associated with compassion and choices push. If you look at the statistics for the so called Death with Dignity laws in Oregon and Washington the vast majority of people do not select to end their lives because of pain but rather they fear losing their autonomy. People also fear being a burden personally and financially on their family. The answer to me for better end of life care is for all people to express their wishes to loved ones. We also need a national discussion about conditions in nursing homes and hospitals. Why are social supports for those near death so inadequate. Families should not be faced with situations such ass the one you described. I have no answers here and am glad to have made you think.
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