Proud of What They're Trying to Take Away

Because what's left?

Today is the last day of June, which means the corporations and cities take down Pride flags and, if you blink, you’ll miss the handoff. July is Disability Pride Month. I’m not part of the LGBTQ community, so I’ll leave that month to the people who live it. But I’ve watched how they do pride, the loud, unapologetic, we-were-never-the-problem version of it, and I’ve spent a long time trying to figure out how to do my own.

Pride is a strange word to aim at a body like mine.

The word “pride” shows up everywhere in disability spaces now, on the flag, in the month, in hashtags, and a lot of the time it gets used like it’s easy. It feels like a parade you just show up to. Be proud! Of what, exactly? That’s the question the slogan skips, and it’s the only question that matters to me.

My physical body does less every year. I am, by every measure the world uses, the thing it spends enormous energy trying to prevent, fix, cure, or quietly cut from the budget. When somebody hands me the word “pride” and points it at this, I need it to mean something more honest than a feeling.

Let me tell you what it doesn’t mean first, because the fake versions are everywhere and they’re exhausting.

Disability pride isn’t pretending the hard parts don’t exist. I’m not proud that I can’t scratch my own nose at 3 a.m. I’m not going to roll on a stage and tell you my disability is always a gift, because it isn’t. The people who need to hear that aren’t in the audience, they’re in the budget office. Toxic positivity is just inspiration porn wearing a Pride shirt with the accessible parking logo.

It’s not the costume version either. Pride isn’t celebrating disability like it’s a quirky accessory, a fun fact about me, or a brand. I didn’t choose this and I can’t return it. Treating it like a vibe is its own kind of erasure, just a friendlier one.

What’s left, when you strip out the lie and the costume?

This is the part I had to find the hard way. Disability pride, the real version, is the refusal of shame, and it’s heavier than it sounds.

Shame is the default setting. The world hands it to you early and constantly. Every stare, “what’s wrong with him,” buildings you can’t get into, medical forms that call you a defect, doctors who talk to the person accompanying you instead of you, all of it carries the same quiet message: you’re a problem, and the problem is you. You absorb that before you have words for it. Most disabled kids are fluent in shame before they hit puberty.

Pride is the decision to put that shame down. Just to set it on the floor and refuse to carry it anymore. To look at a body the world calls broken and decide it is, in fact, just my body. It’s the only one I get, and it’s gotten me to 35 and into rooms I was told I’d never reach.

That’s a daily act of resistance. Sometimes I’m great at it and sometimes the shame is right there waiting and I have to put it down again. Pride isn’t a state you arrive at, it’s a thing you do, over and over, usually before coffee.

And here’s where I have to turn, because this year I can’t write about pride as if it’s only personal.

This July, the same month the disability flags go up (barely), the country will also celebrate the 36th anniversary of the Americans with Disabilities Act. There will be statements, politicians posting black-and-white photos of the signing, and it will happen in the exact same month that this administration is dismantling what that law promised. It’s happening through Medicaid work requirements that strip coverage by paperwork, a Justice Department opinion inviting states to put us back in institutions, and cuts that impact hardest on the home care that lets people like me live outside a facility at all.

They’ll wave the ADA like a trophy in one hand and gut it with the other, and they’re counting on the celebration to cover the sound.

Pride, this year, can’t just be a feeling I sort out in private. The world is busy reattaching the shame I worked so hard to put down. It’s telling me again, through policy instead of playground taunts, that I’m a cost, a burden, a line item, and a problem to be managed. It’s the medical model disguised as austerity. The only appropriate response to a government trying to shame you back into the institution is to refuse, loudly, on the record, and publicly.

That’s what the LGBTQ folks understood when they turned a feeling into a march. Pride stopped being something you felt and became something you did where everyone could see it, specifically because the people in power wanted you ashamed and quiet. Pride was the refusal and visibility was the point.

That’s the version I’m taking into July. Not pride as a costume, slogan, or a comforting lie about how it’s all secretly a blessing. Pride as the flat refusal to be ashamed of the exact thing they’re trying to cut from the budget and eradicate entirely.

They want us quiet, grateful, and out of sight. The most defiant thing a disabled person can do this month is take up space and refuse to apologize for the body doing it.

The flags change tomorrow. The fight underneath them doesn’t.

Solidarity forever.

-Steve