July is Disability Pride Month.
It’s a month to celebrate our disabled identity, our disabled community and our disabled culture.
Reaching a sense of pride as a disabled person takes work – every damn day. I didn’t always have disability pride. I didn’t even have disability as part of my identity, even though I’ve had Ichthyosis since birth. It was just over 12 years ago when I met other disabled and chronically ill people and that saw our lived experiences were so similar that I realised that yes, I am disabled, too. It’s been liberating and affirming.
Most of the time I feel fucking fabulous. Being disabled just is – it’s a part of me. I don’t hide it, I don’t deny it, and I certainly don’t stop talking about disability and accessibility issues and rights.
But then I am reminded that the world isn’t for me, or other disabled people, when I (or we) encounter ableism or discrimination. And those moments can undo years of work – leaving me feeling unworthy, embarrassed, ugly, gaslit.
I have been thinking of the shame I have carried with me for as long as I can remember. It’s the shame associated with what I leave behind. The skin on my carpet; the build up of ointment on my phone ear piece; the way people gingerly touch things I’ve touched – their fingers like pincers; a child loudly declaring that I smell. leaving my face print on someone else’s silk shirt after I’ve given them a hug; the suggestion that I use a dedicated toilet in a previous workplace because of the skin that fell from my pants as I pulled them down.
I am wanting to write more about it. But I don’t feel like I’m emotionally fit for that right now.
When I talk to other disabled people about the shame I carry because of my disability, they relate. Their diagnosis is always almost different to mine – but they also worry about taking up space; worry about leaving pieces of themselves behind. And I exhale, knowing someone else gets it. I find comfort in being a part of the disability community. We are stronger together.
Happy Disability Pride Month – wherever you are on your journey to finding disability identity and pride. You belong here.
Image: a woman with a red face, short dark curly hair, wearing a blue shirt with birds and snakes on it, tied at the waist, and a long yellow skirt with blue, green and purple paint details. She’s smiling, hand on a hip, sun coming through the window.
If this post has helped you, made you think differently about disability or you have used it in your work, please consider buying me a drink.