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Monday, July 24, 2017

Illness as Metaphor--Hard to Kill a Bad Idea

Last week John McCain announced he had brain cancer. This is bad news for the 80 year old conservative politician. Worse, the cancer, a glioblastoma, is an aggressive and almost universally lethal. When I heard the news my head dropped a bit. I may not like McCain but this is a devastating diagnosis for any human being (especially when one is 80 years old). The odds McCain will live another five years is remote. You don't need an MD to come to this realization. You also do not need to be an MD to know immediately upon hearing the news military metaphors about McCain's "fight against cancer" would abound. Within hours, Twitter lit up with well wishes. When I read about what a fighter McCain is and that he and he alone was the one man that could beat the cancer I did my best to stop reading. Using cancer as a metaphor was debunked long ago by Susan Sontag in her searing memoir Illness as a Metaphor. I read Sontag's book in college. It was a transformative experience. I had just been paralyzed and despised my stigmatized identity. I seethed inside with a burning rage. After a decade of being morbidly sick as a child I was for the first time medically stable and living in a dorm at Hofstra University. In an effort to understand my fall from grace, I read. I was a voracious reader in search of answers: why did my existence seem to be an affront to others? Why did society freely and openly discriminate against people with a disability. It made no sense to me. Enter Susan Sontag and her complete and utter rejection of metaphor in terms of illness. It did not take a huge leap in logic and apply this to disability. The below quote is one that I underlined and have likely read thousands of times. If pushed I think I could paraphrase this from memory:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
I want to describe not what it’s really like to emigrate to the kingdom of the ill and to live there, but the punitive or sentimental fantasies concocted about that situation; not real geography but stereotypes of national character. My subject is not physical illness itself but the uses of illness as a figure or metaphor. My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphoric thinking. Yet it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped. It is toward an elucidation of those metaphors, and a liberation from them, that I dedicate this inquiry.

I know all about the "night side of life". I have resided in the kingdom of the ill and I was liberated from it long ago. I was also liberated and freed intellectually by Sontag and others. My liberation was the forceful rejection of the stigma associated with disability. As a young man I was enthralled--Sontag eloquently rejected the metaphors associated with cancer and illness in general. Her book was short and devastating blow to the daily bigotry I encountered. In my mind, she destroyed all the demeaning metaphors I had heard as a morbidly sick child. All those terrible and destructive metaphors came to mind when I read the flood of good will messages directed at McCain. I had heard them used to describe me as a boy. Even then I knew they were wrong. McCain is no ordinary man. He is a fighter. He is tough. Cancer does not know McCain--he cannot be defeated. He is a hero! Cancer can't beat McCain. Bull. Cancer does and will "beat" people. Cancer kills and that is a fact. People fear cancer. In much the same way, people fear disability. Christopher Reeve and his desire for cure is embraced and he is lauded over as the symbol of American spirit and the will to fight for a cure to paralysis. I and others who advocate for equal access to health care, education, employment, housing and mass transit are despised. As we have seen nation wide, ADAPT protests result in arrest and people with a disability are carried out of building by police screaming about Medicare and liberty. These are the lurid images and remind me of the bad old days when I too put my body on line for equal rights.

Resistance and liberty are worth fighting for. This fight is never about one person. It is not about me and the long odds I supposedly overcame to reach middle age. The fight against cancer is not about McCain's toughness or character. He will not be loser when he dies. The metaphors Sontag rejected remain. These metaphors are deadly because they obscure the real issues. What is the real issue? Access to health care and the built in and deeply ingrained ableism that is ever present in the fabric of society. I am not worried in the least about McCain. He will get world class health care. Almost all the mainstream press coverage ignores the harsh realities most with a glioblastoma will encounter. Being sick in America is a job. It requires a full time effort to insure bills get paid. Being ill requires health insurance. Without insurance one's experience and chances of survival become very different from what McCain can expect. In the Atlantic, James Hablin wrote:

The war cries omit the central fact that if McCain does live another five years, against long odds, the most significant factors in optimizing his chances will have been his access to the best available medical care—and to a supportive family, and to having his basic needs met without a second thought. McCain’s survival would be because he is spared the fights that many cancer patients are not—not the 28 million Americans without health insurance, and the 43,537,800 living in poverty. Link:

I can attest to the fact survival has nothing to do with personal integrity or moral character. I survived and become the man I am because my parents fought and insured I got the very best medical care humanly possible. I was lucky too. My parents happened to live near New York City at the exact same time pediatric neurology as a field of specialization was created. I regularly interacted with the founders of pediatric neurology who oversaw my care. I had a supporting cast of health care workers at a time when little could be done and in this absence received empathetic care. I am alive because of happenstance, privilege, and luck. I was not one iota different than all the morbidly sick children I knew that died.

The language associated with disability and cancer matter. The national discussion about McCain's character matters. It is a smoke screen that makes others, typical others who are not sick, feel better. I am not breaking any new ground here. What I am is a very small part of social, political, and intellectual dissent. As I often joke when attending academic conference, I am the cranky guy in the back who asks the hard questions. There is a reason some groan when I show up at a meeting. It is all too easy to use metaphors and intellectualize cancer and disability. I get it--I am a scholar and write for other scholars. This work is intellectually satisfying. Yet at night I lose sleep over the fact I feat academic discourse obscures the gritty reality of what people with a disability experience day in and day out. I have read many challenging books in disability studies, bioethics, philosophy, and a host of fields in the social sciences. When I am done reading I often wonder what good are these challenging books and essays when poverty abounds within the land of disability. What is the point of disability studies if the unemployment rate of people with disabilities has not changed in nearly 30 years? What is the point of bioethics if people with a disability still encounter social and physical barriers when trying to access health care? What is the point of writing about access to mass transportation if the bus drivers I have encountered in Denver don't like to use tie downs for my wheelchair and put my safety at risk?

In recent weeks I have struggled with the idea of futility. Everything seems futile. The fight to protect Medicaid. Charlie Gard and his parents efforts to bring him to the United States for futile medical treatment. The fact only 15% of dying Americans ever get to hospice care. The GOP effort to repeal and replace the Affordable Care Act. The passage of assisted suicide legislation. The presence of Donald Trump and his continued effort to effectively appeal to hatred and ignorance. The world seems to be a bleak place. And yet when I am a ready to pack it all in I see great beauty in the world. Just last night I went to the Cherry Creek Park near my home. Over 1.7 million people a year visit this 4,200 acre park near Denver. I live in big sky country and last night was spectacular.

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