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

by Johanna Hedva

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?