Disability Pride, or something like it*

I’ve heard that by the time you ask yourself a question that starts with “Can I?” or “Will I?”, you already know the answer.

That may not always be true, but it certainly was when I posted a status asking people to define “disability” and then requested @forgottendancer elaborate on their perspective and experience about a year ago at time of writing. I was going on three years of pain then, and at every new physical therapist—I am now on my fifth—I would look at the survey that asked me “How difficult would it be for you to place a 25-pound box on a shelf overhead? Would it be: not at all difficult, a little difficult, somewhat difficult, difficult, very difficult, or impossible?” and try to figure out which of those answers best said, “Well, I could do it if you needed me to, but only if I knew I had a freezer meal or could order in for dinner, and only if I didn’t have any work to finish, and only if I really had to, because it would place me in bed for at least the following day if not more, and what does it mean to be able to do something, anyway, and if that’s what you care about, isn’t this actually a yes-or-no question, and when I worked in customer service our system counted any score on our 0-5 review system that wasn’t a 5 as a 0, and is the same sort of thing true here?” I had come to the conclusion by then—as well as the acceptance—that this wasn’t getting better, no matter which of the seven (!) diagnoses I had been given by then was right, and I was trying, best I could, to figure out what came next. In the short-term. In the long-term. In my life.

I added “disabled” to my Twitter bio.
Then I deleted it.
Then I put it back in.
Then I added it to Fet.
Then I deleted that one.
This happened like that for a comedically long while.

What I was feeling when removing and re-adding over and over again was… not shame, really, but some form of imposter syndrome, laced with a solid dose of ableism. “Can I say I am this?” is what I was trying to figure out, and no one could give me the answer, so I started off at “why shouldn’t I?” At first it was “I’m not really as disabled as other people” or “maybe I really am faking/overstating this and I just need to get over it,” but it was also “I can’t really be disabled; I’m 25” and it was “I can’t say I’m disabled; I still have so much I’m accomplishing,” and it was “I can’t be disabled; I’m happy.” All of that. Probably more. When it’s written like that, it seems so obviously ableist—or maybe it just does to me now, knowing all I know. But I really did think that, and so do many people. “I could never live if I couldn’t run,” we tell ourselves. “I would be miserable if I weren’t working.” “I could not bear to live this carefully forever.”

But I am living this carefully forever.

So I kept wrestling with it. And I kept looking at definitions. And one day, I just put all the bios back and exited out and that was that.

Soon after that happened, I bought patches to put up next to my desk. “Not All Disabilities are Visible,” one says. “Chronically Ch(ill)” says another. The next day, I brought an extra heating pad and my TENS unit to keep at work. Before long at all, I said it out loud, and then I began learning about disability justice and consuming all the content I could on it and advocating where I could, and joining into a worldwide network of others. Many had the same story as me, and even the same diagnoses. I recognized some on earlier parts of my journey. Some recognized me on theirs. I suddenly had a life filled with people who knew the things that the doctors didn’t give us enough attention to figure out, who had concrete advice on how to make cooking and writing and sex happen with all of this and how to do it well at that, who knew where to find the most stylish canes and the comfiest pillows. Over the last year I’ve become sincerely happy for the word/identity/community and don’t imagine I’ll ever keep a bio without it again. It’s important people know.

Now I’m told it’s Disability Pride month. And I’ve been wondering—do I feel pride?

Over this year, I’ve felt held in my new community, particularly in light of the pandemic. I’m surrounded by those who have a vastly different view of the world than what I was raised with, and it’s one I need right now. My old mantra—“good things come to those who work their butts off”—doesn’t fly anymore, because we all know it isn’t that simple. We don’t talk as much about productivity or long-term goals; life could change in an instant and we have mourned our goals before. We focus instead on personhood, pleasure, in-the-moment enjoyment, getting through. We nap. I once had a therapist tell me “you are not a human doing, you are a human being,” and I didn’t know how to just *be.* Maybe I still don’t. But these days, I admire the people I’ve met who do know how just as much as I ever looked up to prodigies and the prolific. In that all this is an accomplishment in shifting an engrained and hammered-home Western model of life, I can understand disability pride. I am certainly proud of being among other disabled folks.

But am I proud to be disabled?

I don’t know that that’s quite right—but in that “pride” may be the opposite of “shame,” sure. Though I still have times of hesitance and second-guessing, I identify as disabled and I do it fairly loudly. I declare it as a way of honoring my body, my limits. A thing that is held up and honored in the extreme haunt community as well as kink, there is something major to be said about that sort of self-awareness and the ability to say “this is where I hit a wall; this is where I cannot come alongside you anymore” and to ask/expect others to understand and even accommodate that. And there is something major to be said about showing everyone that mine, too, is a disabled body, and to challenging old communities to think more often of how to provide for *this* one, to wearing my brace and my heating pad and my TENS unit in public; I will not let something as insignificant as vanity tell me that I must be in more pain when I have other options.

I don’t know that “disability pride” is quite right, but in that I am disabled and I am proud of *myself*, sure. That’s important, too. I do spend a lot of time hating my body. Not for how it looks (though that is certainly not an experience I hold as any lesser in my mind for those who do) but for how it feels. For having been saddled with this. Of course I hate it. I am aware, every second, of how much it does not work. I do not acclimate to it, these feelings of pinching and burning and weakness and the new pain that makes me physically ill, the idea that standing too quickly makes me pass out and the ongoing need to do so next to a wall or a support, the fact I cannot plan ahead and at the same time constantly must. But I am still doing what I can to make myself a joyful person. I am more than this body. I was always meant to be. I am still reaching towards the peculiar and the extraordinary, the manic pixie dream girlhood that’s now about me and not *them*. I am still doing what I can to show my reverence for and obedience to my King, measured these days more in who I am over how much I do, and *He is proud of me*, and so how could I dare not be proud of myself?

I don’t know that “disability pride” is quite right, but it isn’t not, either. When I say it’s important that people know, I say that because telling people I am disabled is a form of liberation. It is a way of saying “nope, that isn’t going to be possible for me” without going through the entire traumatic story of my medical misadventures for the thousandth time. It’s a way of making it clear I’m not looking for their cure of yoga/CBD/positive thinking, or even of [insert medical procedure here]. Those comments still come, certainly, and there’s the hurt and frustration of being told I’m too young/pretty?/active to be disabled, but I can handle that, and then I know who to avoid. It happens faster this way, if it’s going to.

It’s a way of outlining my interactions from the first moment, just as I have had to learn to set boundaries in other areas of life *before* the problem happens. It’s freedom from lengthy explanation and letting people down. I’m disabled. I cannot and will not ever be able to give you a clear and definite commitment to that time, date, or activity level. I cannot and will not ever be able to guarantee rapid-fire deadlines. I am letting us both out of the awkwardness and inconvenience of last-minute excuses. I’m disabled and I cannot and will not attend your event if there isn’t going to be adequate seating or air conditioning, and I am letting us out of the drama of my fainting during your fun. I’m disabled, and I can’t be expected to do the chair-stacking and the banner-hanging and the heavy lifting and the all-nighters just because of my youth and verve. I’m disabled and I do not have patience for you speaking about you or me in terms of what we have/will accomplish alone. I’m disabled. I just am.

I’m comfortable with it now. That’s what I suppose I’m trying to say. As much as I am at home in this body, in my submission, in my wild and unfettered dreaming, I am confident and comfortable in telling you I’m disabled. That’s more than I was a year ago. I know myself and the world better for it, and *I* am better for it.

Happy Disability Pride month. I am disabled. I have pride. We’ll go from there.


*Note: I am not currently looking for any advice or suggestions of things-to-try. Thank you for understanding in advance.*