Disability and storytelling: a view from one lived experience

Author Linda Sargent discusses how crucial it is for children to read stories centred on disabled characters.

Disability can so often be a cruel tool for disconnecting us from the physical, outer world which can suddenly turn into an alien and threatening place where so much seems lost to us and we become like the Little Match Girl, outside in the cold looking in on those happy people inside, warm, comfortable, part of a group we are excluded from. Stories, though, can be an equally powerful tool for reconnecting, not only to this room, but potentially to a wider world, a rich inner world of the imagination, where so much is possible. We have the opportunity for not just experiencing this reconnection, but for making our own connections, and telling our stories.  

It was what happened for me. 

Adopted as a baby and growing up as the only child in a farm worker’s family in nineteen fifties/sixties rural Kent, I enjoyed a busy, active and bossy life tempered only with the ordinary anxieties of childhood, and then at eleven I was eventually diagnosed with Juvenile Arthritis/Still’s Disease – eventually, because it took time to find the right doctor who believed that my illness was real and not due to an “over-active imagination”. 

What followed was no more cycling, rounders, tree climbing, cartwheeling, handstands, and all of those taken for granted pain-free activities, and no more weekly walks through the gooseberry fields to the nearby tiny library. From here I carried home Kathleen Hale’s Orlando, Enid Blyton’s Famous Five and Secret Seven, Pamela Brown’s Swish of the Curtain. Milly-Molly-Mandy, collections of fairytales and so many more.  Stories that sustained me then and continued to sustain in the after time of disability and physical confinement. And still do. 

Having said that, stories arising from the lived experience of disability were scarce, if they existed at all. I lapped up What Katy Did and identified with her after her injury and subsequent disability, which in her case was, of course, temporary. Similarly, with The Secret Garden, here, Colin is eventually able to be cured and rise from his wheelchair restored to full health. And further back was the example of Dickens’ Tiny Tim, tragic but brave, but also potentially an object of pity. All familiar to many of us who are disabled. I also loved the stories by Rosemary Sutcliff, especially those set in Roman and pre and post Roman Britain. At the time I didn’t know she too was someone with Still’s Disease. Re-reading (as I often do) in adulthood, I can see how she brings this so vividly and truthfully into her storytelling where the characters live out real lives and those who are disabled are not there to serve as mere symbols. They are people adapting to the world they were in, making their own way and telling their own stories. So much must have surely arisen from her own lived experience. 

Perhaps Tosh’s Island grew from the impulse to try and tell my own story, to re-connect as I came to understand there would be no sudden complete cure.I was not tragic and not always easily brave, but often lonely and feeling left out, left behind by my contemporaries, sometimes mocked and even feared. Pain can be very isolating.  

Inspired by childhood memories of frequent visits to the nearby North Kent coast, the island in the title sprang from my day-dreaming that one of the old World War 2 Sea Forts on the horizon could be a tropical island. In the story, Tosh now unable to run and walk painlessly on the familiar shore, gazes out to her island imagining an easier life. It’s her island after all, her rules. Then, by the breakwater she sees a boy (Louis), drawing her island. Soon friends, together through Louis’s art and Tosh’s stories, they share magical visits to the island, and it becomes a place where both can escape from the realities of their own lives and Tosh can swap her painful legs for a mermaid existence. When they part Louis and Tosh agree to write to each other, with drawings and stories. 

In Tosh’s real world, at her new school, her best friend, Millie, keen to fit in to a new gang, starts to withdraw. As Tosh’s illness developsshe is excluded and often mocked as she begins a pretence which lands her in unforeseen difficulties that ripple through the rest of the story. Eventually, though, she and Louis are re-united on their beach and re-connected to their combined stories in a mutually supportive way, ready to face new adventures. 

And so the story of Tosh’s Island, a mixture of fact and fiction, yet all true, is not one of miraculous cures,sudden leaping from wheelchairs, but a way of finding our place in the world by connecting empathetically through the stories we can share through our own individual lived experiences. Importantly, the collaborative nature of working this story into a powerfully visual graphic novel form was hugely rewarding (and very connecting!) and can hopefully serve as an inspiration for other aspiring readers and artists: an affirmation of the power of imagination and its role in empathy and compassion. 

Tosh’s Island first appeared in weekly episodes during 2023 in the Phoenix Comic. The response from readers has been hugely positive:

“It can help you learn to live with a life-long condition and the way friendships and imagination can help along the way”. Sasha and Leon. “Tosh stands out to me, it’s like an … unexplainable feeling, she feels so much like me and it makes me feel more connected to the comic”. Amber, 11. 

And, unlike in my childhood, there are now starting to be a growing number of books appearing featuring disability, a rich variety, from picture books, middle grade and YA. Not all necessarily focussing on disability as a theme in itself, but as part of the story world, where a diversity of characters are confronted by their own individual challenges and adventures. There is so much more to explore, to learn and understand. 

Tosh’s Island by Linda Sergant, Joe Brady and Leo Marcell is out now.