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Tuesday, October 7, 2014

Terminal Normativity Displayed by Ezekial Emanuel

Last month the Atlantic published an article by Ezekiel Emanuel. Aside from the provocative title, “Why I Hope to Die at 75", there is nothing original or particularly insightful in the article. Link: Emanuel wants to die at 75 for reasons that highlight a life of privilege. I have no idea why he wrote this essay. Perhaps he shares the views of his brother Rahm Emanuel, former White Chief of Staff, who in 2010 caused a controversy by referring to liberals as “fucking retarded”. What is very clear is that Emanuel cannot perceive life in a different body. Specifically a body that is not fit, white, and male. Emanuel believes as we age our bodies and mind deteriorate. He does not advocate for assisted suicide. He simply has no interest in living beyond 75 years of age. He considers his life complete at 75. His family thinks his desire to die at 75 is crazy. I disagree. He is not crazy. Rather he is a narrow minded bioethicist utterly incapable of creativity and imagination. He is a privileged white male that cannot imagine life without a body that functions typically. Emanuel is very sure about his position. Emanuel’s certainty reveals why I am ill at ease with the field of bioethics. The atypical body is not respected. Normativity rules the discipline. The thought we live in an ableist society is noted and summarily dismissed. Among the most objectionable passages the below took me aback:

 "But here is a simple truth that many of us seem to resist: living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic."

Clearly disability is bad. I am surprised to learn I am not creative. I am surprised to learn I cannot contribute at work or to society. I am surprised to learn my life has been devoid of vibrancy. I am surprised to learn my life has been one of deprivation. A few things do not surprise me. I am not surprised to a well-known bioethicist has such an overwhelmingly negative view of life with a disability and the aging process. I am not surprised that my life as a man with disability may or may not be worse than death. I am not surprised by the anti disability and ableist rhetoric. I am not surprised I am treated differently as a man with a disability. I know this because people, generally strangers, tell me they would rather be dead than use a wheelchair. 

For Emanuel, there is only one way of living, that is a life with typical physical ability and typical cognitive functioning. I would fail the test for fitness Emanuel refers to conducted by Eileen Crimmins. An assessment of physical functioning includes the ability to walk ¼ of a mile. I fail. Climb ten stairs. I fail. Stand or sit for two hours. Half a failure. Stand up. I fail. Bend and here I assume being bipedal is required. I fail. Kneel with out special equipment. I fail.  My failure is physical. Society’s failure is how disability is framed. Simply put, society demands normalcy. I reject this via a life time of adapting to a body that is atypical. Each and every physical deficit described by Emanuel as fit can easily be adapted to and, for lack of a better word, overcome.

Aging and disability are terrible. Emauel described his father in the following paragraph.

About a decade ago, just shy of his 77th birthday, he began having pain in his abdomen. Like every good doctor, he kept denying that it was anything important. But after three weeks with no improvement, he was persuaded to see his physician. He had in fact had a heart attack, which led to a cardiac catheterization and ultimately a bypass. Since then, he has not been the same. Once the prototype of a hyperactive Emanuel, suddenly his walking, his talking, his humor got slower. Today he can swim, read the newspaper, needle his kids on the phone, and still live with my mother in their own house. But everything seems sluggish. Although he didn’t die from the heart attack, no one would say he is living a vibrant life. When he discussed it with me, my father said, “I have slowed down tremendously. That is a fact. I no longer make rounds at the hospital or teach.” Despite this, he also said he was happy.

I shudder to think of how Emanuel would describe me. His father and I are delusional. Amazing. How can a man so well educated utterly fail to grasp that elderly and disabled people are happy with life? Does being sluggish or slow really matter? To a degree the answer is yes in terms of time. It takes me longer to perform typical activities—my activities of daily living in rehab speak. So what. Let’s think out of the box for a second. Could my life or that of an elderly person be brought up to speed. You bet! How about personal and family support networks? How about community supports? All have been demonstrated to enhance the life of elderly and disabled people. The problem is not with the body but the lack of a socially constructed environment that is accessible to people that use adaptive technology such as wheelchairs. The elderly Emauel states “are likely to be more incapacitated. Does that sound desirable? Not to me.” Emanuel goes on to state:

Our expectations shrink. Aware of our diminishing capacities, we choose ever more restricted activities and projects, to ensure we can fulfill them. Indeed, this constriction happens almost imperceptibly. Over time, and without our conscious choice, we transform our lives. We don’t notice that we are aspiring to and doing less and less. And so we remain content, but the canvas is now tiny. The American immortal, once a vital figure in his or her profession and community, is happy to cultivate avocational interests, to take up bird watching, bicycle riding, pottery, and the like. And then, as walking becomes harder and the pain of arthritis limits the fingers’ mobility, life comes to center around sitting in the den reading or listening to books on tape and doing crossword puzzles.

Emanuel cannot imagine bodily difference.  He observes diminishing capacities.  Like many, he observes what people cannot do. In contrast, I see a world of possibilities and the ability of the human body to adapt. I value the interconnectedness that disability in the broadest sense of the term creates and makes obvious. I value the elderly and their “sluggish” bodies. I admire a myriad of adaptive devices that empower people. I admire the wild creativity of the other--in this case those who are elderly or disabled or both. Toward the end of the article Emanuel suggests his views will be condemned.  In an effort to be clear he states:

I am not saying that those who want to live as long as possible are unethical or wrong. I am certainly not scorning or dismissing people who want to live on despite their physical and mental limitations. I’m not even trying to convince anyone I’m right. Indeed, I often advise people in this age group on how to get the best medical care available in the United States for their ailments. That is their choice, and I want to support them.
And I am not advocating 75 as the official statistic of a complete, good life in order to save resources, ration health care, or address public-policy issues arising from the increases in life expectancy. What I am trying to do is delineate my views for a good life and make my friends and others think about how they want to live as they grow older. I want them to think of an alternative to succumbing to that slow constriction of activities and aspirations imperceptibly imposed by aging.

Emanuel ignores the power of his words. We do not live in a social vacuum nor is our decision making process free of outside influences. Emanuel is correct in that no one openly scorns a person like me or an elderly person. Instead we kill them with kindness and maintain their life on the precipice of disaster. As Mary Johnson wrote in Make Them Go Away: Clint Eastwood, Christopher Reeve, & the Case Against Disability Rights, no one wakes up thinking I am going to discriminate against the disabled. We good hearted people and care about the handicapped and elderly! Sorry but no.  Society does not value our existence.  The backlash I experience when I assert my civil rights or when people who are elderly demand to be treated equally is about fear. Emanuel’s article to me is about fear as well. People fear aging and the end of life. In response to that fear end of life has morphed into a right to die. This is what happens when the normate to use Rose Marie Garland Thomsen’s awkward word, dictate and set the terms of the debate about aging and disability.  Disability becomes the ultimate fear—a fate worse than death. Based on my life as a paralyzed man for the last 38 years I can assure others there is nothing to fear. Disability is not necessarily bad and aging is merely a biological inevitability.  All who are born will die. This is a given. It is the way we adapt to life that is most important. All people when given the chance have something to contribute.


Unknown said...

Thanks for your sane response to Emanuel. As I was skimming his essay--it wasn't worth actually reading--I couldn't help but wonder how he'll feel when he's 74.

Middle Child said...

He'll probably change his mind when the big day comes -

elf said...

Dr. Alex Smith over at GeriPal has a great response:

elf said...

Dr. Smith over at GeriPal has a great response to the original:

Sara Buscher said...

His reasons for not living past 75 struck me as self-centered egotism. His biggest concern is how he will be remembered!! He should be concerned about how he has positively impacted the lives of other people. Nothing about love and relationships here. Egad!! How would you like to be his 75+ patient?