Disability History Month: Juggling Spoons – The Art of Creating With Disability by Lorraine Wilson

Book cover for THIS IS OUR UNDOING by Lorraine Wilson, featuring watercolour artwork of a fox peeking out between the trees of a moonlit forest and the title and author name in yellow I don’t know if you’re familiar with the concept of ‘spoons’ to describe living with disabling illness, so I’m going to start with a wee story. In 2003, Christine Miserandino was having lunch with a friend, who asked what life was like living with chronic illness (read her essay here). Christine proceeded to hijack spoons from neighbouring tables to show that each day she started with x number of spoons’ worth of energy, pain levels and resilience. For every activity she did that day, she paid a spoon, or two, or three, losing energy and gaining pain until she ran out of cutlery. The analogy has caught on amongst the disabled community as a succinct explanation of our intangible reality.

I’m a ‘spoonie’. I live with illnesses that cause chronic pain, ‘brain fog’ and fatigue amongst other fun symptoms, so each day is a balancing act of how many spoons I have, versus how many things I want or need to do. So what costs spoons? Anything, to be honest. A phone-call, a walk, driving, watching TV, meeting a friend for coffee … writing, attending writing events (even online), presenting at writer events (so many spoons). I recently spent four days away on a writing retreat with a few friends. It was wonderful, it also cost me two weeks of almost constant migraine afterwards.

So how does writing and being an author work when you’re a spoonie? Put simply, it depends on two things: kindness, and planning. My own kindness in forgiving myself the days I simply cannot write and setting myself achievable targets, and the kindness of others in remembering that I might need to rest, or leave early, or cancel at the last minute. Also the kindness of the entire industry in making (keeping) events accessible, but that’s a whole other blogpost (see this great SoA guide)! And planning – it takes organisation, being ill. If I have an event on Saturday, I must ration meds and activity during the week so I reach the weekend with enough spoons and medicines to see me through. I must clear my diary for recovery time afterwards. If I’ve a deadline coming up, I must factor in ‘crash’ days, and not commit to coffee with friends or that event mid-month I really want to
go to, and I’ll need those recovery days again.

It’s not easy; in fact it’s exhausting and if you stop to think about how much your life has shrunk due to your disability, it can be heart-breaking. But there’s an upside. Or three.

I left a demanding career due to my health, and in searching for distraction I discovered, and fell in love with writing. I found an amazingly supportive community of disabled writers. And being a spoonie has made me a more thoughtful writer. The one thing I have in abundance is time lying in the dark on my own, making for introspection aplenty. It’s driven me to explore the duality of a character’s strengths and weaknesses, empowerment and disempowerment. It’s also, obviously, made me much more aware of the portrayal of disability and neurodivergence in the books I read, and thus determined to write characters who are the heroes of their own stories, regardless of whether their bodies or their minds fit the preconceived hero mould.

When I look at bad disability representation in fiction, there are a few main tropes. There’s the easy visible disfigurement, no  invisible illnesses please unless we’re implying hypochondria (hello, swooning Victorian lady). A facial scar is perfect – obvious but not actually restrictive. There’s disability as a sign of evil (the Bond movies and a lot of European folklore) or as a thing to be cured before the character can attain their desires (The Witcher, and any SFF where disability is miraculously ‘eliminated’). If they’re not evil and can’t be cured, well, hell, they are just going to have to inspire the main character with their stoic bravery (see also ‘supercrip’ narratives). It’s enough to make you scream, if that didn’t cost spoons.

But there’s great stuff out there too. There’s Kaz (Six of Crows, Leigh Bardugo) Rae (The Theft of Sunlight, Intisar Khanani) and Harper (A Curse So Dark And Lonely, Brigid Kemmerer), all living with chronic pain and mobility impairment but also with complex, badass character arcs; there’s Makkari in Marvel’s movie The Eternals, a superhero who didn’t need to be cured to be super, and a host of characters in John Scalzi’s Lock In.

So much of fiction is about transformation, about being forged in fire and emerging a wiser version of yourself. Disability transforms you, it forges you; it also exposes the underbelly of the world around you. For storytellers whether disabled or not, there is a power in that, as well as a challenge. Disabled people make up 20% of the UK population. That’s a massive readership crying out for stories of people like themselves having adventures, romance, solving crimes and taming dragons. And there are a lot of disabled writers out there creating these stories while we juggle spoons, support one another, and fight to have our voices heard. We are masters of defying the odds though, and our stories are mighty. Alan Rickman said you can cut a heart out with a spoon after all, and he was never wrong.

Lorraine Wilson is a conservation scientist who now writes speculative fiction influenced by folklore and the wilderness. Her debut novel, This Is Our Undoing, was released this summer and a second is due out next year. You can find her on Twitter as @raine_clouds and purchase a copy of her debut directly from the publisher, Luna Press, here.

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