We cannot have a unified disability rights movement if it also ignores the lived experiences of chronic illness. How do we resist ableism without turning that resistance on our own bodies? How do we stay grounded in the present while trying to build a better future?
I’ve had several conversations recently about the intersection of pain and disability pride, and the difficulty of holding space for both. I’m still teasing out how to articulate it, but I see the two as simultaneously connected and distinct.
My pride comes from the resilience of our community. Our ability to thrive regardless of the circumstances. Our unwillingness to settle for anything less than what we deserve. The incredible activists upon whose shoulders we perch, who made this life as we know it possible and allowed us to dream even bigger.
Pride in this identity isn’t the same as being proud of pain. The pain is part of me, but I would get rid of it in an instant. I still strive for a cure to my pain without seeking to “cure” my disability. It isn’t the disabled experience that is demonized; it’s the discomfort you can’t escape that comes from within.
But we can’t untangle the inner workings of bodies from disability. I think it comes down to the socialization of disability. I lean towards abled versus disabled as the crux of our identity, that the world enables certain people while disabling others (through lack of ramps, captioning, etc.). The desire to rid ourselves of pain is distinct from these interactions because it doesn’t involve society at large.
I’m still unsure how to reconcile the disabling effects of pain — can they also be characterized as a social problem? If providers were willing to come to our homes, if remote work were the norm, would things be different?
I’m sure we can hold space for both pride and pain. Wanting to feel better doesn’t make you a bad activist — it makes you human. However, the movement has a ways to go in figuring out how to incorporate both of these ideas at once without allowing our bodies to serve as a battleground.