Defining Human to Leave Out Almost Everyone
The phases of life we'd rather not see
This week, I’m talking about the stages of life we try to erase from our understanding of what it means to be human. On Thursday, I’ll share some of your reactions to The Meaning of Birth.
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.
I'm not sure if this counts as being "left out" as human, but eh, here goes.
No one prepares you for the penultimate phase of aging. There is some vague knowledge of that final stage: you'll maybe wear diapers and need help with showering and taking medicines. Most folks I encounter seem to assume that they will just have to enter a nursing home at that point. For many people, that may be the best option. Yet often that phase of highly intensive care is 3 months - 3 years long. There's a stage prior to that where additional help is needed, but full-time care is not. You are able to get dressed on your own, maybe you have no incontinence, but your executive functioning has declined. This is the stage where parents need their children to help. The burden of care is not so extreme, but things become increasingly hard to navigate solo. This phase can easily last 10+ years.
You go to a doctor's visit and you're not able to get much out of it. The doctor maybe said 10 different things, but you fixate on 1-2 of them (which aren't the most important things). You have an erroneous medical bill for a rental device that was returned, but you don't know how to send the photo of the receipt on your phone to the credit card company. You get stuck when some stage in the process requires you to use your online account, and you don't know how to dig through menu options to find the dispute form. Your claim for a prescription to be covered by Medicare was rejected, as was your appeal, and now you wonder if you should even bother trying to get this prescription. It takes multiple phone calls to various agencies to begin the process, and requires a very direct conversation with your doctor about a possible error they are making. You feel nervous driving even though you haven't been in an accident, and you don't know how to call a Lyft on your phone yourself.
These are all examples from my grandmother who is 86 with a terminal lung condition, and who moved in with us one year ago. She's in such good shape otherwise. She is very sharp in lots of ways and manages her brand new Apple watch (which has fall detection and she uses for its oxygen detection). She still balances her own check book! But we easily put in 2-5 hours a week of helping her with these little tasks that start to add up, and her other children easily contribute a combined 8+ hours a week to helping her or visiting her. People can slow down very unevenly, so it's hard to predict exactly when and how they will need care.
We know that we are the outliers when it comes to Americans, but I just can't wrap my head around how much other families have isolated their elderly members. I have regularly suggested that it's a good idea to have more children so that you can have more assistance when you are older. The general response is "I don't want to force my children to change my diapers." When grandma gets to that point, we'll hire a different caregiver (not that I'm above changing diapers, but that I'm busy with the baby's diapers!). No one seems to consider that they may slow down and need help a decade before diapers enter the equation.
As a result of living in a close-in, gentrifying suburb of a major metropolis, it seems like I see every stage and mode of being that is not “default male professional worker in his 30s” erased. Perhaps that’s an exaggeration, but it often feels that way at times! It pops up a lot in local design choices - policies, programs, buildings. A new apartment building will have a dog park and a pet washing station planned, but no playground. The streets will get plowed but people using wheelchairs or pushing strollers get left stuck with frozen slush in the curb cuts. There’s talk of making the municipality “for all” but the definition of all — or human — doesn’t extend to the very young or very old, caregivers, etc. The given neutral state is unencumbered and unattached, and then maybe we try to accommodate other situations instead of designing universally from the start. Except most people have some encumberments, so the “all” ends up being very limited.