Chapter One: Infirmity
You never forget the first time a doctor gives up: when they tell you that they don't know what to do-they have no further tests to run, no treatments to offer-and that you're on your own. It happened to me at the age of twenty-seven, with chronic pain, but it will happen to many of us at some point, with conditions that may be disabling or eventually fatal. The vulnerability of bodies belongs to the human condition.
I don't remember what movie we had gone to see, but I know we were at The Oaks, an old arts cinema on the outskirts of Pittsburgh, when pain stabbed me in the side, followed by an urgent need to urinate. After bolting for the bathroom, I felt better, but with a band of tension running through my groin. As the hours went by, the pain resolved into a need to pee, again, which woke me up at one or two a.m. I went to the bathroom-but as if in some bad dream, urinating made no difference. The band of sensation remained, insusceptible to feedback from my body. I spent a night of hallucinatory sleeplessness sprawled on the bathroom floor, peeing from time to time in a vain attempt to snooze the somatic alarm.
The next day started sensibly, with a trip to my primary care doctor, who guessed that I had a urinary tract infection and prescribed a course of antibiotics. But the test came back negative, as did tests for more abstruse conditions. The pain did not abate. From that point on, the time line is hazy. My memory is poor and medical bureaucracy defeated any attempt to have my records transferred from Pittsburgh to MIT when I moved eleven years later.
But I won't forget the principal episodes. First, a urodynamic study in which I was catheterized, asked to drink a vat of fluids, and made to piss into a machine that measured rate and flow and function. Normal. Second, a cystoscopy in which an apparently teenage urologist projected an old-fashioned cystoscope through my urethra in agonizing increments, like a telescopic radio antenna. It certainly felt like something was wrong, but the report again was negative: nothing of clinical interest; no visible lesion or infection in the bladder or along the way. It must have been a busy morning in the clinic, because the doctor and nurse forgot about me after the null result. I gingerly restored my clothes and let myself out, hobbling awkwardly down Forbes Avenue back to the ludicrous Gothic skyscraper in which I worked, the turgid penis of Pitt's Cathedral of Learning looming over me as blood dripped into my underwear from mine.
The final consultation in Pittsburgh was with another urologist. At that point, I was getting used to what I called "my symptoms"—able to sleep through the discomfort. I was living my life, more or less, with the hum of pain as background noise. The urologist advised me to keep it up. "I don't know what explains the sensation," he said. "There doesn't seem to be a definite cause. Unfortunately, that's not uncommon. Try to ignore it if you can." He prescribed low-dose Neurontin, an anticonvulsant and nerve pain medication, intended as a sleep aid, and sent me on my way. I'm still not sure if the drug was a placebo. It seemed to help, but I stopped taking it, without discernible effects, a few years later.
And that was that, for roughly thirteen years. No diagnosis; no treatment. I ignored the pain when I could and threw myself into work, nervously enduring flare-ups that would decimate sleep, along with daily life, from time to time. Meanwhile, the rest of my family had their own travails. In 2008, my wife's mother was diagnosed with Stage III ovarian cancer. My mother-in-law is the writer and critic Susan Gubar, who with Sandra Gilbert wrote The Madwoman in the Attic
, a feminist classic that asked "Is the pen a metaphorical penis?" A force of nature, she metabolized her illness through writing, describing with brutal precision the tortuous "debulking" surgery to remove the most visible tumors, followed by chemotherapy, the painful insertion of drains that failed to relieve a postoperative infection, and her subsequent ileostomy. Her Memoir of a Debulked Woman
cites writers and artists who have grappled with illness, including a nod to Virginia Woolf, who censured literature's silence on the subject in her essay "On Being Ill." Woolf herself was characteristically decorous: "She may as well not have had bowels, for all the evidence of them in her book," the novelist Hilary Mantel complained, recounting her own brutal surgery in "Meeting the Devil." Susan's book rectifies Woolf's omission, with frank descriptions of struggling to shit after the debulking that removed more than a foot of intestine, her fear of soiling herself in public, the "bed of pain" to which she was attached for seventeen days as the drains failed to do their job, the excrement that dribbles from the stoma of her "ostomy," and the persisting disabilities of cancer and its treatment. "More than half a year after the last chemotherapy," she wrote, "my feet were still dead and I could not stand up for more than a few minutes without aches and fatigue setting in." Despite all this, she has survived so far, against all odds, thanks to a drug trial that worked when a third round of chemo did not.
Meanwhile, her daughter, my wife Marah, was found to have a dermoid cyst on her left ovary—"dermoid" meaning the kind of cyst that can grow teeth and hair—which had to be surgically removed. She is high risk for breast and ovarian cancer, having inherited the BRCA2 gene from her mother, and is regularly screened. My father-in-law survived open-heart surgery, and back in England, my mother was diagnosed with early-onset Alzheimer's.
I document these trials not because we are unusually stricken—a family of Jobs—but because I'm sure we're not. We all face transient illness and incapacity. And everyone knows someone with cancer, heart disease, chronic pain. In the time of Covid-19, we have friends and relatives who have suffered or died, often in isolation. The fragility of health and everything that depends on it is impossible to ignore. Even the most robust are bound to age, capacities fading as they leave the demographic once dubbed by disability activists "the temporarily able-bodied"; disability should matter to anyone who is hoping to get old. A non-ideal approach to life does not wish these facts away, leaving the body behind. Instead, it asks how we should live with the malfunctioning bodies we have.
One of the most basic lessons of recent work in the philosophy of medicine is the need to take care with words. Beginning with the idea of health as the proper functioning of the body and its parts, an emerging consensus contrasts disease—
a category of malfunction—with illness, which is the negative impact of disease on lived experience. Disease is biological; illness is, at least in part, "phenomenological," a matter of how life feels. It is, as philosophers say, "contingent" whether or not disease makes life go worse. In general, how well you are able to live when your body malfunctions depends on the effects, which are mediated everywhere by luck and social circumstance. If you have free access to medication, a serious disease like type 1 diabetes may not involve much illness; if you have no health care, a minor infection or dysentery may kill you. The result is that illness is distributed even more inequitably than disease, following lines of wealth, race, and nationality.
Matters are more subtle still with disability, both long-term and the incremental disabilities of aging. In the last few decades, disability theorists have argued for a social understanding of what it means to be physically disabled. Thus, in Extraordinary Bodies
, the critic Rosemarie Garland-Thomson aimed "to move disability away from the realm of medicine into that of political minorities." It was the work of these minorities that led to the passing of the Americans with Disabilities Act in the U.S. and the Disability Discrimination Act in the U.K. Disability is the focus of a struggle for civil rights.
It has taken time for these ideas to migrate into my corner of philosophy, but a recent book by the philosopher Elizabeth Barnes agrees: "To be physically disabled is not to have a defective body, but simply to have a minority body." Garland-Thomson and Barnes do not line up on everything: they differ on the nature or "metaphysics" of disability. But it is common ground between them-as among many disability theorists and activists-that when you abstract from prejudice and poor accommodations, physical disability does not generally make life worse. Like being gay in a homophobic culture, being disabled may be to one's detriment, but that's a social failing, not a natural inevitability. Physical disability is not, in itself, an obstacle to living well.
It's a claim that provokes both puzzlement and resistance. Philosophers often treat the imposition of disability as a paradigm of injury or harm. And able-bodied people may view the prospect of being deaf or blind or unable to walk with dread. But while it's easy to misinterpret, there is truth in the activists' claim: given adequate accommodations, physical disability need not prevent us from living lives that are, in general, no worse than the lives most people lead.
If physical disability is a category of overt bodily malfunction, it's not akin to illness but disease. Bodily malfunction is biological; its effects on lived experience are contingent, subject to circumstance. That means there is a sense in which physical disability cannot be bad for you in itself. If it makes life worse, that's because it affects how you actually live. A wider moral is drawn in the Daoist parable of the farmer's luck, which I learned from Jon J Muth's radiant picture book Zen Shorts
. When the farmer's horse runs away, his neighbors sympathize: "Such bad luck!" "Maybe," the farmer replies. His horse returns with two more: "Such good luck!" "Maybe," the farmer replies. The farmer's son tries to ride one of the untamed horses and breaks his leg: "Such bad luck!" "Maybe," the farmer replies. With his broken leg, the son cannot be drafted to fight in a war: "Such good luck!" "Maybe," the farmer replies . . .
So, it all depends. Specifically: whether a physical disability makes your life go better or worse, all told, depends on what effects it has. What is more, a wealth of data attests to the fact that, even in the world as it is, the effects are not so bad: people with physical disabilities do not rate their own well-being significantly lower than other people rate theirs. "A massive body of research has demonstrated that people who acquire a range of disabilities typically do not experience much or any permanent reduction in the enjoyment of life," a recent survey of the literature concludes.
For all that, puzzlement persists. There's no denying that needing a wheelchair, or being blind or being deaf, estranges you from things of value: the pleasure of a solitary mountain hike; the look of the scenery; the strains of birdsong in the air. It is in that sense harmful. As the farmer's luck reminds us, there may be collateral benefits. But other things being equal, how can disabilities like these fail to make your life go worse? Isn't that what happens when you take away something good?
The puzzle turns on mistakes about the nature of the good life that go back to Aristotle. It isn't just that Aristotle is preoccupied with the ideal life, the one you ought to choose if everything were up to you, nor that he would regard disability of any kind as incompatible with living well. It is that he thinks the best life is "lacking in nothing." It is the "most desirable of things," to which nothing can be added. If anything good was missing from eudaimonia, he argues, adding it would count as an improvement; but it's already the best. This goes along with Aristotle's vision of a single, ideal life, organized around a single activity—contemplation, as it turns out, though the first nine books of the Nicomachean Ethics
lead us to expect, instead, the life of the accomplished statesman.
Aristotle's monomania is repressed by contemporary authors who recruit him to the project of self-help. Psychologist Jonathan Haidt is typical: "In saying that well being or happiness (eudaimonia
) is 'an activity of soul in accordance with excellence or virtue,'" he writes, "Aristotle wasn't saying that happiness comes from giving to the poor and suppressing your sexuality. He was saying that a good life is one where you develop your strengths, realize your potential, and become what it is in your nature to become." But apart from being more sex-positive, Aristotle was saying exactly what Haidt says he wasn't. Eudaimonia
, for Aristotle, is a life of intellectual excellence, meditating on the cosmos and its laws, or it's a life of practical virtue-of courage, temperance, generosity, justice, friendship, pride-supplied with every gift of fortune. There is no room in Aristotle's thinking for a plurality of good-enough lives, in which individual human beings develop their particular talents, interests, and tastes.
The mirage of a life so perfect it is lacking in nothing; the conviction that there is just one path to flourishing: these are ideas we should resist. When I think of my heroes, people who lived good lives if anyone does—none of them perfect—what stands out is how different they are: Martin Luther King, Jr.; Iris Murdoch; Bill Veeck; a political visionary and activist; a novelist and philosopher; a baseball executive. The list goes on, increasingly scattered: my teacher D. H. Mellor; Talmudic icon Rabbi Hillel; the scientist Marie Curie . . . Feel free to supply a list of your own. I'll bet its members won't have much in common.
What this diversity reflects is a liberalization of what goes into living well in the long aftermath of Aristotle's ethics. There is not just one activity to love—contemplation or statesmanship—but a vast array of things worth doing, ranging from music, literature, TV, film, to sports and games, conversation with friends and family, the essential labor of doctors, nurses, teachers, farmers, sanitary workers, to commercial innovation, science pure and applied . . . even philosophy.
It's not that anything goes. Aristotle may have been wrong to focus on a single ideal life, but he was right to affirm that some things are worth wanting, while others are not. Take Bartleby in Herman Melville's incomparable short story, "Bartleby, the Scrivener." Narrated by a complacent but well-meaning lawyer who hires the mysterious Bartleby as a copyist, the story pivots on Bartleby's sudden refusal to proofread. Requested to do so, "Bartleby in a singularly mild, firm voice, replied, 'I would prefer not to.'" Things spiral from there. Never giving any reason, Bartleby repeats his mantra. He prefers not to eat anything but ginger nuts; not to talk to colleagues or to check for mail at the post office; not to help the lawyer hold down a piece of tape; not to leave work at all—Bartleby begins to live there; not to answer questions about his life, preferring to be left alone; not to quit the office even when he's fired; not to copy anymore, but also not to move in with the lawyer or to take another job; and when forcibly removed to prison, not to eat—until he dies. We may sympathize with Bartleby, but his desires do not make sense.
Copyright © 2022 by Kieran Setiya. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.