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Defining Human to Leave Out Almost Everyone
The phases of life we'd rather not see
I’ve just finished reading Meghan O’Rourke’s The Invisible Kingdom: Reimagining Chronic Illness (don’t worry, I have Six Frigates: The Epic History of the Founding of the U.S. Navy on deck for a change of pace). O’Rourke had an excellent conversation with Ross Douthat on Ezra Klein’s podcast a few months back if you’d like to learn more about her story.
One of the passages that stuck with me came near the end of the book, as O’Rourke talked about the tidy stories people expect to hear about illness.
[Arthur] Frank identifies three kinds of illness stories: restitution narratives, chaos narratives, and quest narratives. In restitution narratives, the sickness is bearable because the ill people believe that in the end they will get better. Restitution narratives emphasize recovery over the reality of illness. In fact, the restitution narrative could be called the dominant mode of late-capitalist illness narratives. As Frank notes, "Contemporary culture treats health as the normal condition that people ought to have restored." Frank himself had cancer. During his treatment, he noticed that health care workers interpreted his experiences "within a narrative of movement toward recovery of health."
Sometimes it feels like we talk about health as though it had a gravitational pull. It is the natural state, and it feels like it should just take a gentle push to get the body rolling back down to its resting state of strength and ability. There’s some truth to this claim. I think Victoria Sweet writes very well about seeing her role as a doctor as assisting the body, not controlling it.
But this point of view is frustrating when a full recovery is impossible or when it gives us strange expectations about aging. In Anne Helen Peterson’s Culture Study, she had a recent post about “Zoom dysmorphia” (discomfort with seeing our own faces all day) and casually dropped this line:
I’ve read pieces comparing the embrace of “Baby Botox” (not for babies, just “baby” amounts) to sunscreen use: before, people didn’t know that we needed it. Now, it’s the norm — just the way you take care of yourself.
I won’t tackle the sunscreen claim, but I got angry seeing the argument that botox was in some way a part of maintaining health. (Peterson goes on to say she thinks it can be “necessary” in the way dying your hair or other ways of hiding your age are “necessary” for women due to societal expectations).
Wrinkles are what a person looks like if they’re lucky enough to grow old. Physical weakness is part of who we are at the beginning and end of our lives, and, especially for the chronically ill, for large parts of the middle. And, as Richard John Neuhaus points out in Death on a Friday Afternoon, we can’t strike the normal progression of life out of our definition of humanity.
It has always struck me as puzzling that some people say that an embryo or a very small fetus does not look like a human being. That is exactly what a human being looks like when it is two weeks or two months old. It is what you looked like and what I looked like.
The restitution narrative treats suffering and dependence as an unnatural state—a privation of something that we rightfully have. But (to paraphrase Hamlet) the thousand natural shocks are what flesh is heir to. The lively health we experience for a time as teenagers and in our early twenties is not the way our bodies will work for the rest of our lives. It is not what we had at the beginnings of our lives. We do better with a supportive culture for all persons and capacities, rather than an expectation we’ll sustain that sort of strength forever.