How to Tell When We Will Die: On Pain, Disability, and Doom

by Johanna Hedva

Diarrhea never makes its way into myth.

There are many definitions of ableism, and I’d encourage you to look them all up, especially the ones written by disabled people. One of my favorites is by Talila A. Lewis, who updates it every year as a working definition so it changes as the world and Talila’s thinking does. Here’s the 2022 definition: able·ism /'āblizәm/ noun: A system of assigning value to people’s bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression leads to people and society determining people’s value based on their culture, age, language, appearance, religion, birth or living place, “health/wellness,” and/or their ability to satisfactorily re/produce, “excel,” and “behave.” You do not have to be disabled to experience ableism. If you remember one thing from that definition, I’d like it to be the last sentence.

And yet, I am in agreement with those in the disabled community who would portend that, no matter how it arrives, disability will arrive for everyone, sooner or later. In a way, this vastly disparate category is the most universal condition of all—the horizon of it is just closer to some than others. It is always there, and the question is not if but when it will arrive for you. This is not the same as any other political identity. Not everyone on this planet will one day become queer or not white or a woman or colonized, but they will become disabled.

This is why we need ableism. Ableism protects us from the most brutal truth: that our bodies will disobey us, malfunction, deteriorate, need help, be too expensive, decline until they finally stop moving, and die. Ableism is what lets us believe that this doesn’t have to be true, or at least, that we can forestall it, keep it at bay, and that this is based entirely upon our own will. Ableism and its fantasies allow us to operate as if our abilities, our bodies, are always at our command, under our control, and that they will function when and how and for as long as we want them to, as we need them to.

What will it take to spur people on a massive scale to tear down the system of ableism when doing so will leave no cushion between us and the actuality of all the ways we will suffer, we will be in pain, we will be unable to do what we want, and eventually, inevitably, we will die? How do we build a politic that stares into the face of our own end and finds a way to continue? It’s an unendurable task.

How privileged are you if you first require hope in order to act? What about those where hope was a luxury they couldn’t afford, and still they wrote books, they made music, they sang? They keep singing.

To those on the outside, activism looks insufferably self-serious, self-righteous, and is always prone to hypocrisy. So, you tweet about Black Lives Matter, but you buy your anti-racism books from Amazon? So, you preach about the climate catastrophe, but you flew on an airplane to go on vacation? So, you are pro-Palestine, but you have not boycotted any of the corporations that support Israel? Are these standards useful? In my opinion it’s better to risk hypocrisy, to try and fail, try and make mistakes, try again, than not to. What is gained, proved, accomplished by the not-trying? What happens by doing nothing?

Over the years, I’ve noticed that when topics of disability make their way into a mainstream place of discussion, it’s often around terminology, what the disabled community wants or doesn’t want to be called. The abled community usually responds that we should not take such things so seriously, and the disabled community can only reply by doubling down. I am not very stirred by this as progress. I don’t want the abled community to think that all we care about is words. As if the greatest challenge, the greatest harm, to the disabled community starts and stops there. On the other side of this, I think of how many newly disabled people are shamed and criticized by those of us who’ve been here longer because they don’t yet know the community’s preferred language. I often think of something a crip friend said about their disability justice activism: “I don’t want to leave anyone behind because they use the wrong word.” I wonder what would happen if all the mistakes and the things we don’t yet know, the ways in which we fumble and fuck up, were the moments that we let build us into an us?

A favorite recent meme: I’m only friends with people who would have been lobotomized in the 1950s.

Obviously, I’d prefer the conversation about access to be about real shit like universal health care, a living wage, and abolishing the police and prison-industrial complex, but I have to start where I am, with what is within reach, so for now, all-gender bathrooms and ramps and alt text will have to do.