It took more than 30 years for me to read a novel that centred around someone like me. So when I read Sensitive, by Allayne L. Webster, last year — I immediately felt seen.

This young adult novel revolves around 13-year-old Samantha, who has eczema and allergies (like Webster herself). She’s sick of medical appointments, tests, pain; sick of looking and feeling different. All she wants is to be “normal”.

So when she moves to a new town, she decides to reinvent herself — and pretend to be healthy.

Sensitive is based on Webster’s experiences with chronic atopic eczema and multiple life-threatening allergies.(Supplied: UQP)

Her internal struggles are accompanied by the external barriers of people’s attitudes to her condition; the notion that her body should be ‘fixed’ is regularly expressed by her doctors and family.

I grappled with these kinds of attitudes and my own internal angst throughout my childhood, thinking I was the only one.

Reading this novel was one of the first steps towards feeling at ease in my body.

More than that, it was professionally encouraging: at the time I read Sensitive, I was already working on my own novel, which revolves around a disabled girl. It was empowering to see voices like mine in the pages of books.

Growing up, the only disabled characters I’d encountered in my reading were evil, alienated or monstrous (think: Captain Hook in J.M. Barrie’s Peter Pan).

How, as an avid reader in a society where roughly one in five people live with a disability, could it take more than 30 years for me to come across an ‘authentic’ and relatable representation of disability?

The history of disability representation

My experience is not unique.

Jessica Walton, a disabled author of children’s and young adult fiction (Introducing Teddy; Stars In Their Eyes) told ABC Arts: “I don’t think I remember seeing a lot of disability representation in fiction when I was growing up.”

A non-binary person in a black tshirt and cardigan stands in a TV studio
Writer Jessica Walton co-wrote an episode of Get Krack!n in 2019 that focused on disability.(Supplied: Jessica Walton)

And when we do find disabled characters, they tend to be the creations of white, non-disabled men — for instance, William Shakespeare’s Richard III, Captain Ahab in Herman Melville’s Moby-Dick, and Christopher Boone in Mark Haddon’s The Curious Incident of the Dog in the Night-Time.

These characters are often portrayed using tropes and inhumane stereotypes; at best they appear as tragedies or objects of inspiration (as in Winston Groom’s novel Forrest Gump), and at worse as witches or evil monsters (such as Mr Hyde in Robert Louis Stevenson’s The Strange Case of Dr. Jekyll and Mr. Hyde).

Kay Kerr, an autistic journalist and YA author (Please Don’t Hug Me; Social Queue), says: “The disability-as-tragedy narrative was probably quite prominent [when I was] growing up … [Or there were stories focussed on] the sibling of a disabled character and how hard their life has been made by having the disabled sibling.”

Why does Own Voices representation matter?

In the last decade in particular, there have been increased calls for better representation of disability in literature, from across Europe, Australia, the United States and beyond.

In 2015, Dutch author Corinne Duyvis (The Art Of Saving The World; On the Edge of Gone) parlayed this sense of frustration into a movement, Own Voices, highlighting books that centre characters from groups who are typically marginalised, written by authors from the same marginalised group.

The movement took off on social media, where #OwnVoices was used by people across the world to find and amplify these kinds of stories.

This push is about smashing harmful perceptions of disability and instead providing real, complex representations of disabled people – as beings capable of joy, creativity, lust, intelligence and pain.

Publishing more books written by disabled authors is one of the many ways our society can shift towards treating disabled people as equal, valued members of our communities.

A young woman with a bob haircut wearing a pink dress standing in a garden surrounded by pink flowers
Kay Kerr was writing the first draft of her debut young adult novel, Please Don’t Hug Me, when she was diagnosed with autism.(Supplied: Kay Kerr)

I personally think there are ways non-disabled authors can write disabled characters well, but this should not exclude or outnumber Own Voices stories, as it does now.

Walton says: “I’d love to see more disabled authors being published, because once we’re writing about our experiences, that really gets across authentically what it’s like to be disabled.”

Both disabled and non-disabled readers enjoy and benefit from these kinds of stories.

For disabled readers, it is often about being seen, heard, and validated, as well as feeling safe to enjoy a story. Every time I read an Own Voices disabled character, I learn more about myself and our world. These characters give me language to describe my experiences of things like going to the pool, physical pain or meeting new people.

The book cover of Social Queue by Kay Kerr, an illustration of a woman and a group of people vying for her
In Social Queue, 18-year-old Zoe’s article about her dismal dating life goes viral.(Supplied: Text)

Kerr says: “If I pick up a novel and I know that it’s an autistic author, I know that I’m not going to come up against bad stereotypes or things that might frame an autistic character as being emotionless.”

For non-disabled readers, Own Voices stories provide opportunities to relate to and understand a disabled person’s experience.

Walton says about her novel Stars In Their Eyes: “There was a review where someone said that they really felt like they understood what it must be like to be the disabled person in that situation, and then they were going to apply that to their real life.”

More broadly, novels that explore perspectives different from one’s own offer up one of the great pleasures of reading: to be transported.

Where we’re at with Own Voices

These days, you can find books about disability written by disabled authors in most bookstores – albeit, mainly in the non-fiction sections.

Recent Australian examples include Growing Up Disabled In Australia edited by Carly Findlay, The Shape of Sound by Fiona Murphy, Unseen by Jacinta Parsons, My Friend Fox by Heidi Everett and Show Me Where it Hurts by Kylie Maslen.

Outside Australia, notable recent examples include Disability Visibility edited by Alice Wong, The Pretty One by Keah Brown and Being Heumann by Judith Heumann.

In fiction, however, published stories by disabled authors have been harder to find.

In a 2018 research paper, academics Emily Booth and Bhuva Narayan found that over four decades, only 30 of 1,359 published Australian YA fiction books could be classified as Own Voices. Narrowing that search to disability would yield an even smaller number.

Great recent examples include Michelle Kadarusman’s 2020 middle grade novel The Theory of Hummingbirds, in which protagonist Alba deals with medical treatments for her club foot and grapples with the desire to be ‘normal’, while searching for wormholes with her friend Levi; and Kay Kerr’s Social Queue, about a young autistic woman who is navigating the dating scene as well as an internship at an online media company.

Walton’s new YA graphic novel Stars In Their Eyes (illustrated by Aśka,) follows a couple of days in the life of Maisie, a queer disabled teenager who is heading to a fan convention.

The book cover of Stars In Their Eyes by Jessica Walton and Aśka, illustration of two young people holding each other's hands
Jess Gately in The AU Review writes that Stars in Their Eyes is “a refreshingly fun and hopeful take on the coming of age story … that celebrates nerdiness and reinforces the value of representation”.(Supplied: Fremantle Press)

By exploring the joys and challenges disabled people encounter, and modelling ways non-disabled people can support us, these stories promote realistic perceptions of disability and respectful, just treatment of disabled people.

Walton says: “It’s definitely getting better … a lot of people are starting to write themselves in [to literature].

“But there are still a lot of gaps to be addressed.”

Plugging the gaps

Own Voices fiction by disabled writers might be on the rise, but it still centres on a relatively narrow range of experiences.

This stark under-representation has been created by systems built on ableist ideas and expectations, which have excluded disabled authors.

Barriers into publishing exist everywhere, and skewed perceptions of the marketability of our stories persist.

Disabled writers who also belong to other marginalised groups face even greater barriers to publishing their stories.

Kerr says: “There’s ways to go in terms of intersections of identity.”

Most disabled characters don’t belong to any other socially marginalised group. This pattern doesn’t reflect the diversity of the disability community in Australia, which includes people of all genders, ethnicities, cultures, immigration statuses, religions, education levels and sexualities.

A young person with long hair sitting in front of a wall of green
Bridgford is now a parent, but says there’s stigma in medical systems and communities against disabled parents.(Supplied: Liel Bridgford)

Many issues myself and other marginalised disabled people deal with are rarely represented on the page. These include physical barriers to accessing health, education and leisure, as well as dealing with prejudice when dating, searching for work, or parenting.

Our gusto, creativity, and sense of connection are also missing.

Walton says: “I would definitely like to see publishers making more of an effort to find and publish disabled stories.

“I don’t think I’ve seen many Indigenous disabled characters … [or] LGBTIQA+ disabled characters in fiction … [Finding authors] who are part of more than one underrepresented group in literature would be really great, because there are lots of us who do belong to more than one community.”