I can see it non-disabled people’s eyes. The anticipation, the holding of breath, the waiting for a neat conclusion. When I talk about my life, when I describe recent difficulties or periods of pain or illness, they want a story in the traditional sense. They want resolution, a clear narrative arc, a sense of an at least partially happy ending.
And I give it to them. I find the discomfort and messiness hard to articulate and I want to save them from it, even if I can do no such thing for myself. So, I wrap up things up tidily, perhaps with a comforting smile, and say ‘but things are much better’ or ‘everything is fine now.’
But that’s not my life.
Chronic illnesses and pain don’t just end conveniently when we want them to. It doesn’t follow a three act structure with a beginning, middle and end, that is so important in Western storytelling. It comes round again and again, with peaks and troughs, improvements and flare-ups. Pain might be gone for weeks, months or even years but that doesn’t necessarily mean a chapter can be closed.
Of course, all lives are singular and hard to encapsulate neatly but disabled lives and disabled bodies especially belie a narrow, potentially suffocating ideal of what a story looks like.
As a writer, I know how powerful a clear narrative structure is and how difficult it can be to fit a disabled story into a non-disabled mould. In nature writing, which is where I began my writing journey, publishing has often leaned into the idea of the nature ‘cure’ which doesn’t speak to how I, and many other disabled people, experience nature.
Sure, I love being in nature when I can be and find aspects of it both soothing and energising. It can help me feel better in some ways, particularly with my anxiety, but activities like hillwalking – which I love – can also make my physical pain worse. In short, it’s complicated and not a straightforward ‘cure’.
Writers like Josie George and Polly Atkin are writing about nature in fantastic, nuanced ways, showcasing how complex and moving writing which takes a different, winding and complicated shape can be. But there are still far too few disabled voices getting published in mainstream literature and I’ve got to wonder if this is partly due to the industry not knowing what to do with our stories or perceiving them as ‘unsellable’, alongside a lack of accessibility.
This is a problem that goes beyond the writing world, forcing disabled narratives into obscurity and making it harder to tell everyday stories of our lives, with their joys, difficulties and challenges.
The pre-existing shapes that stories are slotted into do us all a disservice. Whether we are disabled or non-disabled, readers or writers, the shapes of stories are important. Seeing similar patterns to our own, seeing similar experiences represented or finding something relatable in a story should be something that disabled people can do.
We should be telling our own stories, in all their intricacy, complications and potential for discomfort. And for non-disabled people to never read or hear a disabled story forces us further into invisibility, giving ground to the idea that we don’t exist and therefore don’t need to be listened to or valued, or have our needs met.
After attending an insightful recent workshop on disabled narratives with Charlotte Heather, founder of The Remote Body which runs writing workshops for disabled and chronically ill people, I was inspired to think further about what shape my story could have.
Instead of an ‘arc’, I was encouraged to think of it as a circle, or a perforated line, or as a meandering river with tributaries breaking off it – to try out different ways of telling that reflect the way my pain goes up and down without a clear endpoint, and repeats itself cyclically.
The possibilities are endless, and creatively rich. They’re not only important in terms of amplifying disabled voices, but they are interesting from a craft perspective and have so much to add.
So next time I talk about my pain or my body, I’ll try not to grin and bear it, and make my story fit into non-disabled patterns.
I’ll try not to make other people comfortable when talking about my own discomfort. I’ll let it be the shape that it is; organic, changeable, hard to figure out. I won’t shut down possible futures by ascribing my own ending.