The other day I was giving a doctor I'd just met my usual spiel about how I'm researching the origins of the caregiving crisis. I asked, rhetorically, how is it possible that an essential part of the human experience has become a crisis?
He said something I've heard many times before: The answer is simple. Before modern medicine the sick and disabled either lived or died. The strong survived and the weak didn't. There was hardly any need for caregiving.
When I hear the weak/strong line, I brace myself for whatever’s coming next. We’ve already slid into something that strikes me as eugenics adjacent: framing it as natural that this category of people, the weak, should die.
No wonder people recovering from accidents and illness cling to the terminology of war. They are warriors. They are survivors. They have to prove that they’re not weak, that their death is not merely what’s natural and right.
The pervasiveness of this myth that disability is new baffles me. Why would we think that people in the old days were either healthy or dead?
Most of us from the Christian tradition come away with the idea that there were a lot of sick people eager to be healed, even if we just glimpsed it in the stained glass and frescoes. If the disabled died right away without lingering like they do now, who was Jesus healing? Who left those piles of crutches at shrines?
A visit to a museum in Montreal taught me that the ancient Egyptians made pilgrimages to the shrines of Imhotep. Cleaning out my uncle’s house, I was amused to find a replica of the oldest prescription, a Sumerian tablet pressed with cuneiform. Visiting the beguines in Ghent, I learned that medieval monasteries providing shelter to the frail elderly were the origins of today’s nursing homes.
If you've survived high school English, you've certainly had to answer some multiple choice questions on a number of plot devices that hinge on disability and care work. In Already Toast, Kate Washington provides a nice overview of the literary trope of the angel in the house.
Even if you managed to avoid all of those nerd things, if you’re reading this you came of age before Disney started working to address their problematic depictions of the disabled as villains.
No one really thinks there was no one who needed care prior to modern medicine. It’s just an off-hand remark, a cliche no one but me is literal enough to make a fuss about. It’s just something that quietly shapes the way we view the people in our lives.
Why is the idea that disability is new so appealing that people who know it’s not true still embrace the idea?
It’s easy to imagine why a doctor would mute his knowledge of history in order to roll with it. If every major disability and illness were a death sentence before modern medicine, it makes modern medicine seem incredibly powerful. Of course a doctor wants to see himself as saving lives, rescuing the weak from inevitable death. He wants to believe his work is part of a trajectory that is eradicating human suffering.
As much as doctors have a reputation for big egos, not all of them are ready to admit that they aspire to be modern day saints. Even those that require their patients to make modern day pilgrimages to their offices.
If eras before ours had virtually no disabled people, it makes our society appear uniquely benevolent. We may have a military caste strewn across the globe, conquering, pillaging, and demanding tribute. We may hide in our homes, guarded by security systems and gated communities, watching glowing boxes warn us of the havoc in our cities. Sure, the disabled aren’t treated particularly well today, but they’re alive and that’s a lot better than previous eras.
If we can convince ourselves that the past was worse than this, far more cruel and brutal, we can maintain the notion of human progress. The doctors and scientists are our saviors, rescuing all of us from our brutish nature.
The more I dive into the history of disability and care work, the more the narrative of human progress crumbles. There aren’t a lot of books on the history of care work, so I have to wade through books on related topics. In order to make sense of the information I find, I have to learn about the daily lives of people in different times.
Historic accounts reveal the same human emotions and core experiences, in settings that sometimes feel familiar and sometimes feel unimaginably different. Things that were flattened into bland facts in history textbooks jump back into their complicated reality. Things don't necessarily get better or worse as much as they are simply different.
In order for this moment in history to be the pinnacle in the story of human progress, we require a past that's brutal. This myth of progress requires that we condemn humanity as inherently bad, as something to rise above. It requires people be flattened into villains. Into good and evil, weak and strong. The world is rendered legible when we believe that those who die are weak and those that live are strong, that there are no accidents of capricious fate.
When we look at the historical record and see people we can relate to, we can let go of the myth that the past was all dark ages of cruelty and suffering. Human evolution happens on a scale more akin to geology than a single lifetime. It doesn’t wrap up neatly into a morality tale.
Which is fine, because without the myth that humans are inherently brutal, we don't need to be rescued from being human.
Speaking of embracing being human, Kate Bowler’s Everything Happens is the warm, funny, real podcast we need right now.
I keep falling into the rabbit hole of medieval disability studies. A paper comparing the causes of death in the medieval era to today does show a lot of things that seem like fast ways to die. Just like many people are surviving COVID and facing long-term disability, survival does not mean the restoration of our previous level of health. Rickets and scarlet fever leave survivors permanently altered. TB and leprosy aren’t known for being quick ways to go. Kisha Tracy and Danièle Cybulskie discuss disability and caregiving during the medieval era on The Medieval Podcast.
You might find this piece by Meg Conley on the ways we judge women to be as interesting and delightful as I found it.
This comic by Nathan Gray on the weight family caregivers carry while providing end of life care was originally published in the LA Times, which has a paywall. It's now republished sans paywall.
Good news for US credit scores: most medical debt is going to be removed from your credit report starting this summer.
Eve Ettinger looks into our age of burnout. What does it mean when everyone is burnt out? And what does it mean that the symptoms of burnout align with the symptoms of CPTSD?
Wellspouse has a talk on PTSD in caregiving coming up on April 9th. It's free to Wellspouse members (and membership costs $30 a year).