It isn’t easy to find a children’s book or young adult novel that accurately depicts disability. According to the Cooperative Children’s Book Council’s (CCBC) 2019 study, only 3.4 percent of all children’s literature had a disabled main character. It’s even harder to find disabled protagonists at the intersection of multiple marginalized identities, such as disabled characters of color, disabled LGBTQ characters, disabled religious and cultural minorities, or disabled fat characters. (It’s worth noting that the CCBC doesn’t currently track characters who fit into more than one identity.) These statistics aren’t surprising, given the landscape of existing disability media and the barriers disabled authors face when trying to get published.
Historically, many children’s books with disabled main characters fall into one of a few categories: inspiration porn, disability as a trauma/tragedy, or protagonist learning a life lesson from a disabled character (often a family member or friend). Inspiration porn, a term coined by late disability activist Stella Young, is found in stories that center around the disabled person being treated as if they’re inspirational simply for existing. It’s written with a “when life gives you lemons” feel-good structure designed to make readers, especially readers who don’t have a disability, feel empowered to do something they assumed to be impossible because disabled people are capable of very run-of-the-mill activities like graduating from high school or going to prom.
The disability as a trauma or tragedy trope often presents a cure, whether one exists in the story or not, as the ideal solution. In these stories, disabled characters don’t get to have nuanced perspectives on their disabilities or to ever feel pride or happiness about their lives; they’re only allowed to be angry or sad about their bodies. In stories where a protagonist learns a life lesson, a disabled friend or family member teaches them that life is meaningful, bullying is wrong, and it’s important to take risks. In life lesson books, like Jojo Moyes’s 2012 romance novel Me Before You, the disabled person usually dies at the end of the novel to further the protagonist’s character development.
In all of these stories that feature disabled characters, readers aren’t expected to empathize with the disabled character; we’re supposed to empathize with their friends, family, and loved ones. If we were meant to empathize with disabled characters, we would see much more varied media portrayals of disabled characters. We would see disabled protagonists who have several disabled people among their larger community, multiply marginalized disabled characters, characters whose disability isn’t their defining characteristic, and characters with rare and stigmatized disabilities. We would have disabled characters in all types of stories, including fantasy, romance, science fiction, mystery, and thriller, instead of the few we have in books like Leigh Bardugo’s Six of Crows (2018), Marieke Nijkamp’s Even If We Break (2020), and Leah Johnson’s You Should See Me in a Crown (2020).
When I’m looking for disability kidlit to recommend, I turn to Unbroken: 13 Stories Starring Disabled Teens, a 2018 anthology edited by Nijkamp, over and over, because there are so few books that fit this description and ask readers to empathize with a variety of disabled people, including multiply marginalized disabled characters in fantasy and science fiction. One of the reasons disability representation is so bleak is because it’s challenging for disabled authors to get published. A disabled author has to get through a series of industry gatekeepers—including a literary agent and an editor or team of editors—before their book is acquired, and they encounter obstacles at every turn, including how their book will be marketed, if they’ll be sent on a book tour, and if any of the publisher’s seasonal marketing budget will be allocated to them. According to Lee & Low’s 2019 Diversity in Publishing Baseline Survey, 89 percent of people working in the publishing industry are nondisabled. Only 10 percent of executive level publishing staff are disabled, with more independent book reviewers identifying as disabled than other areas of the industry (perhaps because reviewers are more likely to be allowed to work remotely).
When we publish so few children’s books with disabled main characters, we don’t offer young readers the opportunity to see themselves in the books they read, or encourage them to empathize with disabled people.
The number of disabled employees in publishing has a direct impact on the type of disability books that are published. Disabled authors often hear that agents and editors “didn’t connect with the voice” and even sometimes that “another type of diversity would be preferred over disability,” as if all marginalized people are just interchangeable selling points for a novel, and disability is currently not a popular trend. Books with rare and/or highly stigmatized disabilities—like schizophrenia, HIV, or characters who use augmentative and alternative communication (AAC) or are nonspeaking—are less likely to be published, especially if they challenge expectations about what it’s like to live with those disabilities. As with all marginalized identities, it’s important to support disabled authors who are writing about disabled characters from lived experience.
It’s unfortunate that the CCBC doesn’t offer statistics on how many disabled main characters are written by disabled authors (nor does it for LGBTQ characters) the way it does for race, and that may be by design. Although it’s important to support and champion disabled authors, there are many reasons an author may not feel comfortable or safe being open about their disability. Someone may risk increased violence, employment discrimination, housing discrimination, losing custody of their children, or police brutality as a result of being openly disabled, especially if they’re also a person of color, LGBTQ, or a religious minority. Children’s publishing shouldn’t require authors to be publicly vocal about their disabilities or pressure them to use their own disabilities as marketing tools; instead, an author should decide what aspects of their private life they’re comfortable sharing with the world.
It’s possible to support authors who are already vocal and proud of their disabled identities without making that level of openness a prerequisite for writing about disability. When we publish so few children’s books with disabled main characters, we don’t offer young readers the opportunity to see themselves in the books they read, or encourage them to empathize with disabled people. Given that young people of color are less likely to be diagnosed or identified as having a disability, it’s even more important that kids read books about more than just the white, cis, straight, middle class perspective of disability that is so pervasive in the media. Rather than disability being painted as solely an inspiration or a tragedy, in children’s books, disability should be presented as a part of life.
Editor’s Note: This story has been updated to reflect an incorrect statistic regarding the percent of children who are disabled. [July 22 at 3:30 PST.]