Scrolling through the interwebs I learned it’s Disability Pride month (in NYC; so, basically, it’s Disability Pride everywhere because NYC is the centre of the uni, duh), and my stomach kind of flip-flopped, because even though I’ve had MS for 19 years, of all the identities I claim and am proud of, my disability feels like a pretty messed up status to throw a party hat on.
Also, parades are the worst. Even accessible ones. They’re boring; they’re full of children, there’s too much standing, fucking clowns, someone always throws up. I’m not putting on sunscreen to watch a 2-hour traffic jam whose soundtrack is a shitty high-school band. You know what’s worse than marching? Watching people march.
There’s a reason parades are free.
Thanks to COVID, I can calm down; because, at least for now, parades are canceled, except I don’t feel off the hook for participating in Disability Pride. I mean, these are my people, right? After 19 long years of living with MS, I owe it to the chronic illness community to figure out my feelings about disability pride. At the very least, I may discover an excuse to drink champagne. Do we get presents? Is there cake? I don’t know how these things work.
Wait, what? 19 years? How come you haven’t figured this out already?
My complete ignorance of the existence of past Disability Pride celebrations, for sure has something to do with the fact that disability visibility is still woefully lacking; but, it might also have something to do with the fact that despite living with some pretty disabling MS symptoms (pain, fatigue, spasticity, vision so low I can’t legally drive a car, and a bladder that only works with a catheter), for many years, I didn’t actually think of myself as disabled. I only occasionally use a wheelchair, and all my limbs are attached. MS was something I had (a disease). It wasn’t something I was (disabled), until I started to need mobility aids and people started asking “What’s wrong with you”.
Disabled was an excruciatingly difficult identity for me to accept.
Having an incurable disease versus having a disability might sound like semantics; but, to me, the distinction was huge, and I rejected the idea that I was disabled. Rejection, though, feels like the wrong word, because, really, I never even considered it. (Internalized ableism much?)
For whatever reason, denial seems to be particularly encouraged in people with MS. From the moment we’re diagnosed, we’re told not to let this disease define us. In response, we vow to never let MS change us. We tell ourselves, “I have MS but MS doesn’t have me”. We somehow think if our will is strong enough, we can simply decide not to become disabled.
And who could blame us? Culturally, we understand disability to be a very bad thing. Possibly the worst thing. There are people, lots of people, who believe that disability is a fate worse than death. We don’t define disability as different. We define it as less-than. So why would I succumb to a disabled identity, let alone slap on a sash and be proud of it?
Because those people are wrong.
If pride, in its simplest form, is a feeling of dignity and self-respect, maybe a little bit of a humble-brag for some of the things I’ve accomplished, then sure, sign me up for some pride. Easy-peasy. I have plenty to be proud of. But we’re talking about Disability Pride, and it feels itchy and uncomfortable to be proud of my disability when all I want to do is murder my disability. How can I be proud of something that diminishes me? That brings me to my knees? How can I be proud of the weakest part of me; the thing that everyone is afraid of, and afraid of becoming?
Being proud to be disabled isn’t about liking my disability. It isn’t about pretending that disability doesn’t straight-up suck. Rather, claiming disability pride is a rejection of the notion that I should feel ashamed of my body or my disability. It’s a rejection of the idea that I am less able to contribute and participate in the world, that I take more than I give, that I have less inherent value and potential than the able-bodied Becky next to me.
Fuck that shit.
Declaring my pride means that I don’t accept society’s definition of disability. Loving my disabled body is a radical act that can challenge the way people think about disability; one that promotes the idea that it’s normal to be imperfect.
Turns out there are lots of reasons for me to celebrate Disability Pride. But, in truth, I realize I must celebrate Disability Pride. Because, if I can’t be proud of my disabled life then I am contributing to the idea that disability makes me less-than. That’s a toxic message to put out into the world – one that diminishes others with disabilities and one that reinforces ableist institutions. Worst of all, it’s a dangerous message to give myself, and I think too highly of myself to do that.
Disability is part of who I am, and I am proud of what I’ve done with these circumstances. Disability pride isn’t about what I’ve lost, or what I can’t do. It’s a celebration of life, and a recognition that all bodies have value and deserve a parade with a high-five from Santa himself.
Disability pride acknowledges that I can do hard things; that I’m still here. Some days, that alone feels like enough to be proud of. So this July, I will slap on a party hat, pop open a bottle of the good stuff, and raise a glass to my broken body, and to yours as well. Happy Disability Pride, Trippers.
What are you proud of?