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Disability Representation

The truth about stories is that’s all we are. - Thomas King, The Inconvenient Indian
Six piles of books leaning against the wall. The image is in black and white except for one pile of blue books
Image source: Jon Tyson/Unsplash/Anne Zbitnew

Ableism is intentional and unintentional discrimination against disabled people. According to Alaina Lavoie, communications manager for We Need Diverse Books and adjunct professor at Emerson College, in Boston, Massachusetts, "Literary agents and editors often turn down books with disabled main characters because they explain they 'can't connect to the story' or don't think the book has marketing potential."

Since 2015, Lee & Low Books has tracked diversity in the publishing industry. Posted on their Open Books blog, the 2019 study identified 11 percent of responders identifying as disabled, still less than half of the percentage of disabled people in North America.

Diversity in Publishing

Disabled writers sometimes have their books rejected by non-disabled publishing gatekeeperson the grounds that they have failed to followthe stereotyped narratives of popular books written by non-disabled writers. One consistent stereotype is that disabled people are a burden to their families. The perpetuation of stereotypes in the publishing world can make it difficult for disabled authors to publish authentic and positive representations of their lives, which is why it is so important that their narratives be heard. Many disabled people consider disability to be part of who they are, their identity. Disability narratives are nuanced and complex and should not be forced into stereotypical arcs.

In a 2020 article in The Guardian, Frances Ryan, the disabled author of Crippled: Austerity and the Demonization of Disabled People, notes that disability, particularly in fiction, is often written by non-disabled authors, and sometimes perpetuates tropes including the evil disabled person, or stories where death is better than living life as a wheelchair user. Disabled authors are often expected to write only about their identity. Ryan reminds that publishing professionals including agents, editors, and critics shape how readers view disability, and whether disabled talent is elevated or ignored. Having more disabled people in publishing positions will require a cultural shift. To help make this happen, Ryan suggests measures such as ensuring internships are paid, offering remote or flexible work hours, and advertising jobs that explicitly ask for disabled applicants.

Disabled authors not only need the publishing industry to improve, but the industries around them - including the media, which decides how these books will be presented to their audiences. "In one television interview about my book, I've been asked by a producer if I would be filmed "doing things around my house in my wheelchair" - something I doubt a non-disabled author would be asked. (I said no.) The more frequently disabled writers are given a platform, the less likely it is their disability will be fetishized."
- Frances Ryan

Disability Representation in Authorship

Four rows of photos on a closeline
The Catchpole Agency website homepage featuring four rows of polaroid photos on a clothesline with the names of authors written in the borders of the images. Image source:

It is estimated that 20% of Canadians aged 15 years and older have a disability. The Diversity Baseline Survey (2019) in the US found that only 11% of people in the publishing industry identified as disabled and in the UK, a similar 2019 survey on diversity and inclusion by the Publishers Association found that only 6.6% of the industry were disability identified. Space must be made for disabled people in a variety of roles in the publishing industry and this includes disabled authors who can tell stories that illustrate a rich variety of experiences that resist tropes and stereotypes.

In January 2022, literary agents and authors James and Lucy Catchpole published a list of 20 books about disability - children's and young adult, adult anthology and non-fiction, adult memoir, adult fiction, and poetry - by disabled authors. In compiling the list, they looked for great writing, with disability or disabled characters in the forefront, and no stereotypical tropes.

In 2020, the advent of the coronavirus pandemic meant that many events such as tours, performances, and panels moved online. Events that didn't accommodate accessibility requests were suddenly beamed directly into people's homes. At a book event held in the San Francisco Public Library, writer and activist Alice Wong spoke about how disabled, neurodivergent, and chronically ill arts practitioners had previously been forced to find alternatives to inaccessible spaces despite being essential cultural workers. Much has also been written on how accommodations, such as virtual appointments, meetings, and events, have been denied to disabled people for years, but are now suddenly the norm.

Wong created the Disability Visibility Book Circle, a one-time $1,000 grant given to 13 disabled writers who published or promoted their books in 2020 and 2021. The purpose of the grant was to allow each writer to create their own virtual promotional event - a talk, interview or reading, with captions and an ASL interpreter. From Kay Ulunday Barrrett's More than Organs, a love letter to Brown, Queer and Trans futures to J. Albert Mann's The Degenerates, a historical novel about four young women institutionalized in the early 20th century, the Disability Visibility Book Circle celebrates, and uplifts disabled writers' creative work all over the US.

Alice Wong released Disability-Visibility: First-Person Stories from the Twenty-First Century, her second collection of essays by and about disabled people. Published by Vintage Books, it is available as a paperback, e-book, and audiobook and a version adapted for young adults. To increase access, Wong commissioned disabled writer Sarah Luterman to write a plain language version available for free download from her website.

Disability Visibility book cover
Disability Visibility: First Person Stories from the Twenty-First Century by Alice Wong white book cover with multi-colour triangles.
Image source: Penguin Random House
Silhouette of a human face speaking

Profile: Amanda Leduc

 A full colour illustration of a smiling Emily Willan, including her shoulders and head.
A full colour head and shoulder portrait illustration of a smiling Amanda Leduc.
Illustration: Rachel Asevicius

Amanda Leduc is a disabled author, editor, storyteller, and activist with cerebral palsy who explores disability and its representation in culture and entertainment. She views the intersection between storytelling and disability as a way to open conversations about representation and how society can be more inclusive. Her non-fiction book Disfigured: On Fairy Tales, Disability, and Making Space (2020) and her novel The Centaur's Wife (2021) both connect "the fight for disability justice to the growth of modern, magical stories, and [argue] for increased awareness and acceptance of that which is other - helping us to see and celebrate the magic inherent in different bodies." (Amanda Leduc, 2022).

These titles are among the first published simultaneously in print and accessible editions (by Coach House and Penguin Random House, respectively).

Leduc works as communications and development coordinator at The FOLD (Festival of Literary Diversity), where she has been instrumental in making the festival a leader in event accessibility. From the initial question, "Who's missing?", Leduc considers accessibility structurally: how can everyone have access to the space, and how can they access the content being put on in the space? The questions born from these initial questions direct the work of inclusion. To those who complain about the extra work involved in accommodating accessibility needs, Leduc responds that "work done without considering accessibility is incomplete."

For those not necessarily planning to focus on accessibility but who are still hoping to find a way to contribute to access, Leduc encourages listening to the disability community and applying your strengths and interests to accessibility. "One question will grow into many other questions," she says, insisting that you don't have to have a broad accessibility skillset; just find your "thing" and embrace it.