I talk a lot about the struggles I face living with disability. I especially don’t pull punches when I describe my symptoms, mostly because if I’d seen someone do the same I would have been diagnosed years sooner.
What I’ve talked less about are the upsides to living with my conditions. Because—surprise—there are
I think I’ve been hesitant to broach this subject for fear I’ll be seen as relishing my conditions. That people will think I’m enjoying “playing the victim”. What I didn’t realise, until very recently, is how essential disability pride is, not just as a survival mechanism, but also one that allows us to
For those not familiar with her work, Carly Findlay is an award-winning writer, speaker, and appearance activist who lives with ichthyosis. She recently published her memoir, Say Hello and I was lucky enough to land myself a review copy. Ironically, my health has been a bit scrappy lately, so it took me approximately 84 years to get through it but goddamn am I glad I did.
Carly is a woman not afraid to take pride in her disability. She acknowledges the struggles but she also (rightly) points out that most of those struggles are the fault of a society that doesn’t support those with disability (particularly those with visible differences).
And she’s right. Disability isn’t a tragedy and to view it as such is horrifically unfair to those of us who live with it. Yeah, it sucks being in pain. And it sucks when you butt up against institutional or social barriers. But I shouldn’t have to SAY THAT just so I can also say this:
If I hadn’t gotten sick I wouldn’t now be focussing on my creative pursuits to the level I am. When I was working full time, I had no energy to do anything outside of work. I’d get home and feel like a sack of mashed potato. Getting sick has meant I’ve had to fall back on anything that can earn me passive income. It’s meant becoming a vector artist, a content writer, and an author. And I love it.
I’m finally writing my first novel, a
Carly also talks about the importance of community and the indispensable relationships she’s formed, both with others with ichthyosis and those in the disability community as a whole. At this
I’ve met some truly amazing people since getting diagnosed. My local pelvic pain group has been there for me through my worst times but also my best. My friendship circle right now is a patchwork quilt of different conditions and it’s the best thing that could have happened to me because these are people I’d fight a bear for and they’d do the same for me. The importance of community, of finding your tribe, cannot be understated. I’m quite literally grateful to my disability for allowing me to forge bonds with some truly awesome people.
Say Hello was an eye-opener for me. It gave me the words and the guts to talk about my disability in a more holistic way. I’m not someone to be pitied and neither is Carly Findlay. I can only hope to make as much of a difference in the world with my writing as she is with hers.
While I have you here…
I’d like to recommend a book that I’ve read and loved. This gives you something cool to read and, if you click through and buy anything in the next 24 hours, I get a kickback from Amazon. Win/win.
The only downside to Carly Findlay’s first memoir is that I couldn’t read it sooner. It’s exactly what I needed to read as someone living with disability.
Get it on Amazon here.