Why representation matters

‘Representation matters’ is a phrase we hear bandied around quite often in publishing, but what does it mean in the real world? People read fiction to discover new worlds and see the one we’re in from a different point of view, but if they never come across anyone like themselves in novels it can be an alienating experience, enhancing a feeling of not belonging.

Take me. I was born with a rare physical disability and spent a lot of time as a child recovering from fractures and operations. Once, in a hospital ward, I read The Secret Garden and wondered if, like Colin, I’d be able to magically get up and walk. The wondering lasted a couple of seconds, the time it took for me to realise it was a load of old tosh, as I did with Heidi and the character Clara. But what if instead I’d thought that it was my fault that I couldn’t walk because I wasn’t good enough or trying hard enough and internalised it?

As an Enid Blyton fan I wanted to be part of the Famous Five, going on fun adventures in my wheelchair or inventing wheelchair lacrosse at Mallory Towers. Those stories, however, where a character happens to be disabled and impairment isn’t the theme of the book, weren’t to be found.

Even as an adult reader, positive representations of disability were few and far between. I held my head in my hands when I read a very popular novel and its storyline of a disabled man choosing to take his own life, perpetuating the non-disabled person’s stereotype that if you have a disability then life isn’t worth living. “I really admire you,” a woman once told me. “If I were like you I’d kill myself”. Where do such ideas come from if not from our culture? This stuff gets personal.

That’s why in my novels I have deliberately included disabled characters going about their everyday lives. That doesn’t mean they’re perfect or exempt from jeopardy – it would make for a rather dull thriller if it they were – but what matters is that they’re there. According to the charity Scope, one in five people in the UK have a disability. So where are they in our fiction? Where is our sense of belonging?

The diversity situation is getting better but there’s still a long way to go. I’m part of the Society of Authors’ group for authors with disabilities and chronic illnesses (ADCI) and we’re a friendly, talented bunch of writers across all genres united by our passions for writing and enacting positive change in publishing. We’re glad to have found each other, have shared goals and the knowledge that we can discuss our publishing fears, worries and success in confidence with people who ‘get it’.

When you’re writing disabled characters, it feels like there’s a huge responsibility to get it right. No-one assumes that a middle-class white female character in a novel represents all middle class white women, but as so few characters in novels have a disability or chronic illness, and many of those that have appeared have been stereotypical, reinforcing tired old tropes of the disabled person being in the narrative to emphasise the sainthood of those caring for them or, on the other hand, overcoming disability to almost be able to ‘pass’ as the non-disabled norm, there’s a real sense of pressure.

One portrayal will never fit all. What’s needed is more writers telling stories from their own lived perspective, such as Elle McNicholl’s award-winning children’s books with neurodiverse characters, and Nell Pattison’s Paige Northwood thrillers set in the deaf community, to name just two. There are lots more I could mention. All of us in the ADCI group want the chance to publish our work and inspire others, who may have thought the industry wasn’t for them, to pick up a pen and start writing.

Disabled people have spent decades being mostly invisible, educated in separate schools, homed in institutions or unable to participate in wider society because it didn’t accommodate them. Change has come and we want to roll that snowball to grow to the size of a mountain. No longer will we be hidden behind closed doors, absent from pages in books. We stand (or wheel) alongside other minority groups experiencing a similar situation.

That’s why it’s ground-breaking that September 24th sees the launch of The Bookseller’s first ever disability issue, celebrating the ADCI in our industry. We don’t want disability to be a niche category but instead mainstream, with stories all can enjoy and books publishers will find financially advantageous.

Representation matters: they are not just two words. It’s a concept that can change lives and society – and is coming to a bookshop near you.

Penny Batchelor is the author of two psychological thrillers: My Perfect Sister and Her New Best Friend. She champions positive disability representation in fiction. Along with EC Scullion Penny is the co-founder and editor of the Thriller Women blog which publishes interviews with female thriller writers.