Advice for writing about your lived experience of disability
Writing about your lived experience of disability can be a powerful way to self-advocate. For Inform, Katerina Bryant provides some advice for how you can write your own story.
My debut book, Hysteria: A Memoir of Illness, Strength and Women’s Stories Throughout History is coming out in September. The process of writing the book was not only clarifying in viewing my experience of illness and disability but allowed me to communicate my needs and experiences to my family.
There is a lot to be said for the power and joy of writing your own experience (whether for yourself, family, publication or all of the above). During the hardest parts of my illness and trying to understand my diagnosis, writing anchored me. It centred my voice during a time where I found myself feeling lost.
The difficult part of writing lived experience is working out where to begin (and end). Each moment cannot possibly fit on the page. It can be equally hard to decide what to say or edit yourself down to a cohesive narrative. Here’s what helped me get the words on the page.
Write a scene
Start small. It’s easy to overwhelm yourself at the beginning. After a medical appointment or an interaction that left me thinking, I got in the habit of writing what had happened. Start to finish. Try not to summarise but write it as it occurred.
As you’re writing, think about what you have found most powerful to read. Is it a heartfelt in-scene description of a conversation? Or is it a scene about family miscommunication that leaves you laughing? Let your preferences guide how you write.
Build a little catalogue of scenes as they occur. You can edit them for clarity later. It’s important to write out what happened and how you felt at the time. Later, viewing the scenes you have collected, it will be easier to assess what you have and then shape them into a narrative.
Think of a moment that makes you smile
When writing Hysteria, it was important to me to write not just the hard parts of living with chronic illness but the joy and humour that tinged my days. Like my partner trying to cheat at a board game while I began dissociating – it broke the moment for me, and I came out of dissociation laughing. Is there a moment like this that comes to mind for you? Something silly that helps you communicate your experience as one that is varied. When we write the highs and lows, it not only allows our readers to connect with us but for us to see our experience as multidimensional.
Write characters
It’s not easy to write yourself and the people around you as characters. In our everyday conversations, we don’t really describe ourselves. But for readers, description helps us imagine who we’re reading about. This doesn’t have to be overdone. It’s not an eighteenth-century novel, but an account of lived experience. And if your audience is yourself or your family, you may not wish to include descriptions (after all, they may not appreciate being described!). But if you want to build an image of the people around you, try to incorporate small details into your writing. In Hysteria, for example, I describe the roughness of my partner’s stubble against my cheek as he hugs me after a difficult appointment. Try to build description into your scenes so it feels genuine and not like a character summary.
Be open
I wrote Hysteria thinking no one would see it but my family and me. This freedom allowed me to write out everything I was feeling without fear; I didn’t imagine a reader sitting over my shoulder. This was just for me and I could say what I wanted. Once it found a home with a publisher, I had to reconsider this viewpoint! In the end, I didn’t remove much as I felt it represented me. But even if you want your writing to be published and widely read, ‘nobody but me will read this’ is a good mentality to start with.
Write everything and edit later, only then thinking about what you wouldn’t be comfortable with a reader learning. Of course, if your manuscript (or story or journal) is never meant for anyone else’s eyes, then this is a moot point. For me, I’ve found that being open on the page allowed me to tap into feelings I had otherwise been unable express. Not only was it good for my book, but it was good for me too.
Writing about lived experience can be equal parts empowering and painful. It’s a powerful way to self-advocate and express, but if discussing trauma, it can be overwhelming. I think my most important advice would be to go gently, go kindly, and write.
Katerina Bryant is a writer based in South Australia. Her first book, Hysteria: A Memoir of Illness, Strength and Women’s Stories Throughout History, will be published by NewSouth in September 2020.