Activism and Advocacy / Anxiety / chronic fatigue / chronic pain / cons / Fibromyalgia / internalized ableism / Living fully

The Power of Creativity and the Disabled Writing Community

I spent 2014 in an acute state of fear.

Yeah, I know that seems hyperbolic, but I was quite terrified. The chronic pain I had been experiencing from the neuropathy of fibromyalgia had levelled up to a state where it felt like someone had injected several areas of my body with burning hot, vibrating curling irons. The most relentless spots were at my hips, knees, and ankles. I couldn’t stand for long, and I definitely couldn’t walk for long on my own power. I’d envisioned the writing on the wall—I would probably end up in a wheelchair. The thought of this had brought me to tears often enough. After all, my world as I’d known it would be over, right?

Reflecting back, I feel really bad for Past Me, because she was #DisabledAndAlone. The only information I’d had to go on stemmed from the typical ableist narratives that we internalize from non-disabled people, especially those in the medical community. I was too young to not be able to move. Everyone had told me this in some shape or form. So, because of my difficulty with walking, I’d also felt like a failure because I couldn’t exercise as instructed. I needed a cane, bought one, but my pain was bilateral, and as a result, I kept falling, getting injured, and needed time to recover before I could move again.

Lather, rinse, repeat.

At that time, I don’t think I fully understood I was disabled. The messages I kept receiving had seemed to me like I could practically cure myself if only I exercised and did yoga. (By the way, Years Later Me made a t-shirt with “What’s the cure for yoga?” on it.)

Also in 2014, I’d decided to do a creative writing exercise to distract myself from my condition. Little did I know this absurd space opera story would predominantly feature a disabled character with a lust for life and a determination to have as much adventure as the galaxy offered. She was fearless, she would still be stopped by her neuropathy at times, but she made it work. She wore souped-up electric red roller-boots as her assistive tech. When she ended up in a hoverchair, she had it painted silver with racing flames. Her name was Noola.

ID: Fan art coloured pencil drawing of Noola Quirk from Life in the ’Cosm, chapter 3, by August Zacher. She has poofy scarlet red hair, a blue and orange tunic dress, blue leggings, and tall red roller boots. She's holding a silver helmet in her right hand and sporting a blue backpack. She has a bright smile.
Noola Quirk fan art by August Zacher

This character became my first community. She got me to realize that I am not a tragic protagonist in a tragic story. And when I decided to submit the book, it got published. That’s when my true destiny was launched. Okay, perhaps that’s a bit dramatic, but you should hear the musical score in my head when I think about what came next!

My first writer’s con. Anticlimactic? Not at all! On the first day, I felt led to a magnificent side quest: at the conference, there had been enough people using mobility aids that I thought, Wait a second. These are only the disabilities I can perceive. There have to be many others with “invisible” conditions, states, and disabilities, too. I need to connect with these humans!

I founded the Spoonie Authors Network a month later, in 2016, without a clue how to begin. But thanks to social media, I encountered disabled and neurodivergent authors who gladly volunteered their time to write as contributing bloggers. We learned from each other’s experiences. Twitter had also become a great way to encounter disabled, d/Deaf, and neurodivergent advocates, authors, and readers. Listening to and reading about their lived experiences had been life-changing for me. A huge chunk of the internalized ableism I carried got crushed into bits. I learned to have pride using the word disabled and even the reclaimed Crip. Through meeting and befriending a disability studies educator, I understood how harmful many commonly-used expressions are, and I eventually became a sensitivity editor of ableist terms. In 2018, I thought out loud to my publisher about wanting to do a fiction anthology where all the stories and their protagonists were disabled, d/Deaf, neurodivergent, and/or who managed mental illness and/or chronic conditions. The director of this small press was also disabled and neurodivergent. He accepted this accidental pitch right away. And that same anthology was nominated for an award last year.

Writing aside, I owe a major debt to a fellow disabled author who witnessed me suffering needlessly with my cane. She’d insisted I try her rollator (a walker with wheels and a seat). It changed my life that instant. When my husband watched me try a rollator in the shop, he too was amazed how well I’d taken to it. (I bought it, named it Noola, and put racer flames on it.) I learned one of the biggest lessons from that experience—accommodations, assistive tech, and mobility devices free us. We are only hindered when they are absent from our environments.

Now that I know I will most likely need a wheelchair for the times I cannot stand too long—even with Noola’s faithful assistance—I browse the internet for all kinds of cool ones. And when someone I know got a rollator-wheelchair combo, I said, “Is it okay that I’m happy for you and massively jealous at the same time?”

But there is something I must not forget to mention. I would be doing my community the greatest injustice if I left out its predominant characteristic: disabled people are funny as all heck! Sometimes, I swear I’ve laughed myself into another dimension. I’m convinced that snark is a superpower, too. As a humorist writer, I will always be won over with the clever-clever funny, especially punch-up humour and satire. Some of the hashtags have been hilarious, and using humour to depict and share the frustration we go through can feel quite cathartic, like a salve for my brain.

When writer conferences decided that part of their mandate is to celebrate the reality of diversity, which includes diversity within disabled, d/Deaf, neurodivergent, Spoonie, and Mad communities, and they invite us to share the intersection of our lived experiences, the best thing happens. Our world expands with each voice, each perspective, and each story.

If I am grateful for anything these past six years and change, it’s not the publishing contracts or the award nomination as much as the community I’ve built and am continuing to build. Because of all these people, I am more confident, loved, feisty…

…but I’m not anywhere nearly as afraid.

Greyscale headshot of Cait Gordon

Cait Gordon is a disability advocate and the author of humorous space opera novels Life in the ’Cosm and The Stealth Lovers. She is also the co-editor of the Nothing Without Us anthology, a 2020 Prix Aurora Award finalist for Best Related Work. When Cait’s not writing, she’s editing manuscripts and running The Spoonie Authors Network, a blog whose contributors manage disabilities and/or chronic conditions. Her latest new adventure is hosting the In the ’Cosm podcast, which is really an excuse to gush over authors she admires. You can find Cait on Twitter and get latest updates about what she’s up to by visiting her author website.

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