Do I Belong? Reflections on Disability Pride Month

It’s Disability Pride Month, and I’ve tried to write about it so many times.

I’ve opened social media. Typed. Deleted. Typed again. It shouldn’t be hard to make this post. But.. I couldn’t.

July is disability pride month. It is meant to celebrate people with disabilities, honoring the anniversary of the Americans with Disabilities Act (ADA). It’s about recognizing that disability is a part of who we are and making disability visible.

So as a disabled scientist and advocate for the chronic illness communiy, why did I find it so hard to talk about? I shared this on facebook and instagram, and the response was overwhelming. I wanted to talk about it here too.

It’s not that I don’t have things to say. I’ve spent years speaking up about disability and accessibility on social media, in science, in research and academia. I’ve tried to be an advocate, a visible voice in a space that so often leaves people like me out.

But to be honest, I still sometimes wonder if I “count.” There are moments I hesitate to use my parking placard if someone might see me walking into a store. I instinctively prepare a justification in my head, just in case. Or hope that maybe one of my large surgical incisions will be visible in my outfit, so I look sick enough.

Even after everything I’ve been through, countless hospital stays, diagnosis after diagnosis, I still wrestle with that strange, in-between identity. I’ve been sicker before. I’ve also had stretches where I’ve felt almost fine. That fluctuation makes it easy to doubt myself.

I’ve had symptoms for more than a decade and I still find it hard to fully embrace the word “disabled.”

And it feels almost shameful to admit that when I’ve worked so hard to be an example for others. But maybe that’s exactly why I need to write this. Maybe pride isn’t perfect? Maybe you can cheer others on while sometimes doubting yourself. So if you’re in that in-between space, I see you. Disability Pride Month is still for you.

So if you’re reading this and you’ve ever felt unsure… not “sick enough”… not “disabled enough”… you are not alone and you deserve to take up space.