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: http://www.geripal.org/2014/09/hey-dr-emanuel-you-might-not-want-to.html
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:
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.
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.
ReplyDeleteHe'll probably change his mind when the big day comes -
ReplyDeleteDr. Alex Smith over at GeriPal has a great response:
ReplyDeletehttp://www.geripal.org/2014/09/hey-dr-emanuel-you-might-not-want-to.html
Dr. Smith over at GeriPal has a great response to the original:
ReplyDeletehttp://www.geripal.org/2014/09/hey-dr-emanuel-you-might-not-want-to.html
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?
ReplyDelete