I went looking for calm in my body. I found Pride instead

Hello,

Honestly, I was wracking my poor little brain about what to say for Disability Pride Month. Of course there’s a million things that make me proud to be disabled, and a million more that make me proud of the disability community. I’ve written about them on this newsletter for the past five (!!) years, and I stand by all of it. Disability Pride is, very genuinely and sincerely, the animating force behind everything I do.

And - a confession - I’ve been finding it difficult to locate within myself recently. Not because it’s weakened (fear not), but because it’s been buried. Under fear, anger, anxiety, grief. Under the work of getting better after I was ill and, I think more saliently, the work of activism in a political climate that keeps getting worse. Who has the time or energy to feel proud? We’re all bloody exhausted.

But then something happened.

There I was last week, lying on my physio’s table and, well, complaining. I’ve had an anxious couple of weeks and we were trying to work out why (this probably doesn’t sound like physio to you but I have a brain injury and these things are complicated, ok?). I’d had a panic attack that day and it had taken me by surprise - especially as my usual techniques for staving them off had clearly and spectacularly failed. “Can you tell me if there’s a place in your body that feels calm in those moments?” Ellie asked.

And, truly, my instinct was to laugh. My body is, it’s safe to say, not the epitome of calm. It’s literally always doing like seven thousand things. It does all of those things with the volume cranked all the way up. It hurts, it’s chaotic, it’s a lot. I’m not mad about it, it’s just not calm. I’m pretty sure I looked at Ellie and rolled my eyes.

But what do you know? Her question has got under my skin. Because no, I do not find calm in this body of mine, but working with Ellie has made me recognise that my body is telling me things and it would be a good idea if I stopped ignoring them. So I’ve been asking myself this week: if not calm or safety, is there another feeling that my body gives me that I can hold onto in the midst of overwhelm?

A surprising answer came back: Disability Pride.

Right down in the core of me, under the aforementioned chaos and pain and anger and grief. Under the noise of my own brain and the noise of the world. There it is. Steady and unbuffeted. Diamond-hard, steely. Unwavering. Pride.

Just because the crap on top of it can make it hard to find doesn’t mean it’s not there.

• Disability pride is a radical act

• Disability Pride Month dreaming

• Disability Pride - even when it’s hard

What was surprising was how embodied that Pride feels.

For so long, my Disability Pride was external. I was proud of our history, our activism, our community. Then I was proud of who we are - funny, resilient, caring, determined, welcoming and so much more. And of course, proud of the things we do - the things we create, the spaces we build, the changes we wrestle from the world. Our bodies - my body - never really came into it. It wasn’t that I believed that disabled bodies were a problem, or even that that they didn’t matter. Bodies just were not a factor in or part of the many things that made up Disability Pride for me.

And now they are.

Disabled bodies are astonishing. Do you know that? They hold rage and grace, grief and love, pain and so much beauty. They adapt and fail and take up space and contain entire universes. Disabled bodies are works of art and works of scientific wonder. They are sexy and hot and cool and rebellious as hell. They are imperfect in the way that all the best things are, which is to say that the imperfections are the whole glorious point. They are needy in the way that all the best things are, which is to say that they force us to recognise that caring for each other is the most fundamental part of being alive and happy at the same time. They are contradictory in the way that all the best things are, which is to say that without anguish, there is simply no joy.

Who wouldn’t be proud of them?

And the more I have pride in my friends’ bodies, the more I am proud of my own. More and more, I like her. I like that she combines vulnerability and strength and doesn’t hide either even when I want her to. I like that she knows exactly how she wants to sit and move and speak and there’s nothing any of us can do about it. I like the way she relaxes into the girls’ arms when they spin me into my chair, and how years of struggling to communicate means she can express a whole sentence with the waggle of an eyebrow. I like how she makes my queerness, my at-odds-with-the-world-ness so legible, because who wouldn’t want to be at odds with the world we are in. I like that she knows that surviving and thriving are drastically different and broadly the same. I like that she demands change from others and demands care from me. I’m beginning to see that, despite or maybe in spite of what society says, my disabled body has never let me down, has in fact never been anything less than what I needed her to be.

Yes, that’s where Pride is. I am so proud of this body. That’s what I can always come back to when I am anxious, or when the world is so loud it makes other forms of Disability Pride temporarily hard to locate. Disabled bodies - yours, mine - are astonishing things. What a privilege it is to love and be proud of them.

Speak soon,
Luce