Performing Disability Pride: Balancing the Power of Visibility and the Space to Simply Be

I wrestled with every word I wrote here. I finally figured out my thoughts just under the wire as Disability Pride Month ends. It's a reminder that disability pride is a process.

I need to confess how much I struggled with overwhelming guilt that I’m just now getting around to the obligatory “here-are-my-complicated-thoughts-about-Disability-Pride-Month-post” as the month is about to end. I had every intention of writing something during the first week of July. And then the second week. But the days came and went, and I could not bring myself to write about Disability Pride simply because my calendar dictated that I should.

Or, more specifically, my social media content calendar. I often joke that I’m a “professional disabled person”—yes, because it’s central to who I am, but also because it’s the basis of my entire livelihood. Ken’s job in the Barbie movie is Beach. Mine is Disability. I mean, if I’m not making a big show of being disabled and proud on the internet, do I even get to keep my Disability Card™?

I say this mostly in jest. There are more than 1.3 billion disabled people in the world. About 2.5 billion people around the globe don’t have access to the internet. I barely survived high school math, but I can at the very least appreciate the data as indicators that being a very online disabled person is not, in fact, standard.

But I can’t shake the increasing sense of urgency I feel to make myself visible online. To not fade away in the face of a world where people make it clear every day that they’d rather disabled people just disappear.

This is not a dramatization. In June, the U.S. Department of “Justice” issued an opinion memo against a 1999 landmark Supreme Court ruling in Olmstead v. L.C. that disabled people have the right to live in our communities instead of being institutionalized. Then, in July (to really get into the spirit of Disability Pride Month) the DOJ decided this isn’t just an opinion and declared “that its long-standing guidance on enforcement of the ADA’s integration mandate and Olmstead v. L.C. is ‘not enforceable.’” Translation: this administration is blatantly rolling back protections that support the basic rights of disabled people to freely exist.

So, I channel my anger by using the privilege of my platform to be as loud and proud as possible. I try to feed the insatiable algorithms in the hopes it might open even one person’s heart and mind to shifting their thinking about disability. And I try to sprinkle in joy among the frustration and heartbreak of what I post.

But I’m also always teetering on the edge of burnout. And I know this is true of so many disabled people. We fight back and bleed out our stories until we’re worn down and dry. (It’s giving vibes of Seymour feeding Audrey II in Little Shop of Horrors.)

We get stuck on the hamster wheel of posting hot takes and explaining our experiences and clapping back at trolls.

Instead of just existing as disabled people, we often end up performing our existence as disabled people. We perform being proud for public consumption.

Look at us—surviving, even thriving, among the unchecked chaos surrounding us. We’re here, we’re loud, we’re proud. Really, we mean it!

Disability pride is a process. It’s messy and beautiful and complicated and exasperating. It’s never straightforward, and there is so much more to it than can ever be captured in social media posts. That’s not to say expressions of disability pride online are inauthentic. Rather, the glimpses of our lives we share are so often strategically crafted to counter harmful narratives instead of being pure unfettered pride and joy.

As much as I’m intentional about visibility, I’m most proud of my identity as a disabled woman in the moments when I’m not putting myself under a spotlight or a microscope. When I’m spending time with my husband, my family, and my friends, knowing I can be fully myself without asking permission, defending my existence, or making apologies for who I am. Embracing disability pride in this moment is allowing myself the space to simply be.

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