Virginia Sole-Smith sent a newsletter yesterday that hit a lot of pain points for me–I’ve been working on my ableism but it’s still so hard to think that my health is just mainly…out of my control. But in the context of the pandemic, it’s really useful to remember that we can “do everything right” and still get sick [emphasis from the author]:
Healthcare mental load, and Covid mental load especially, means there are always things to research and buy and new therapies or treatments or routines to try. These tasks are important. They might genuinely help. And all of these tasks reinforce the understandable but ableist framing of health as simply a matter of willpower, which we see all the time in the discourse of disease. We talk about “beating cancer” and forget that this classifies anyone who dies as a loser. Kids with cardiac conditions are often called “heart warriors,” a term I hate because I don’t want my child to be a soldier in a war against her own body. We have to let go of the idea that sickness equals failure and remember that being able-bodied is the part that’s temporary.
[…] Because here’s the universal truth about health that we keep having to learn over and over: We don’t have as much control as we think.
[…] If it’s possible to delay or prevent infection, we should try to do it. But we can take on those personal responsibilities in an effort to protect ourselves and others without accepting the blame if they don’t work. If they don’t work, it’s not because we weren’t perfect enough or worthy enough. It’s because we were plunged into this pandemic and led by a tyrant who refused to accept science. And because, even now, with ostensibly pro-science leadership at the helm, we are seeing key public health plays fumbled in the name of economics and political capital.
I don’t know about you, but I needed to read something like this. She’s talking specifically about kids getting sick and internalizing this narrative that they did something “wrong,” but I think a lot of conscientious adults feel the same way–when in reality, it was our systems failing us as we got sick, not our own vigilance or moral goodness.