Melissa Hart, Brian Tashima, Rachel DeWoskin & Naseem Jamnia | February 2019

Melissa Hart, Brian Tashima, Rachel DeWoskin & Naseem Jamnia

Search for a children’s or young adult novel that includes a character with Down syndrome—a character like my younger brother, Mark—and you’ll come up with fewer than a dozen titles. When Mark and I were growing up together, I was wild to read books about kids like him and siblings like me.

But they didn’t exist.

A recent World Report on Disability finds that approximately one billion people worldwide live with a disability, and one in ten are children. That’s one hundred million kids struggling with physical and/or cognitive challenges… kids who need to see themselves represented in literature written for and about them.

Thirty years after I tried and failed to find stories that mirrored mine and my brother’s, authors and publishers are recognizing the urgency of including diverse voices and characters in children’s and YA novels.

Now, readers have Sharon M. Draper’s Out of My Mind about a brilliant mute girl challenged by severe cerebral palsy, and Beth Vrabel’s A Blind Guide to Stinkville with a protagonist who navigates albinism and visual impairment. We have Phil Bildner’s A Whole New Ballgame with a boy who has autism and his friend who’s in a wheelchair, and Erin Entrada Kelly’s Hello, Universe—a middle-grade novel with a deaf character who befriends another with a learning disability—which won the Newbery this year.

At the 2018 AWP Conference in Tampa, Florida, I and other children’s and young adult authors spoke of the importance of disability representation in children’s literature, as well as what writers of disabled characters can do to make sure they are crafting accurate and respectful portrayals. What follows is a summary of our discussion.

Melissa Hart

Children and young adult readers deserve realistic characters reflective of themselves and the people around them. Yet, too often, kids with physical or intellectual disabilities are absent from literature for young readers—or, if present, the disability is the focus of the book. How can authors responsibly integrate characters with varying abilities into their work so that the disability isn’t the story, but merely a challenge that a particular character faces within the narrative?

Brian Tashima

Being already familiar with the disability you plan to portray is a good place to start; in fact, in many cases such familiarity is often the original inspiration for the work itself. If you look beneath the surface, you’ll find that a lot of authors who write books with disabled characters are either disabled themselves or have a close family member who is. In my case, my son is on the autism spectrum, and the fact that he can do so many amazing things despite his condition is what really motivated me to write what I did, which is a sci-fi/fantasy story about a boy whose autism is the source of his magic.

Rachel DeWoskin

Empathy is also a requirement. Wonder is the central engine of fiction—and sometimes that can take the shape of a question about what your own life might be like if it were radically different. Imagining someone else’s life—fully and with nuance and compassion—is what fiction (both reading and writing) is about. Of course, as with any writing project, thorough research is essential. Fiction asks questions, rather than answering them, but in order to make the work true, authors have a responsibility to reach out to people and communities familiar with the particulars of their characters’ lives. This is a practice of empathy, too, one that makes for a deep experience and a better book: immerse yourself in the life of a human being other than yourself, understand her/his/their challenges, joys, ideas, and dreams. Because I wondered what it would be like for my perspective to be altered—and what it would feel like to experience the world with senses other than my sight, I wrote a book about a girl who loses her eyesight in an accident. I took private Braille lessons at the Chicago Lighthouse for the Blind, and asked a million questions of anyone who would chat with me—blind teens taught me to play “beep ball,” baseball in which the ball and bases make noise. I saw these kids skateboard, bike, and do all the things kids do. They taught me more than just how to listen to traffic and find things by way of feeling and hearing; they gave me a new way to consider the world. Which is what books do, too.

Naseem Jamnia

Employing (yes, that means paying) sensitivity readers is also a good idea. Sensitivity readers are people with a particular identity who will read drafts of your manuscript and provide you with specific feedback regarding how your characters are being presented. As a sensitivity reader myself, I read for trans and queer portrayal, psychiatric disabilities, and Muslim and Middle Eastern representation. And I recommend using us even if you’re “familiar” with a community; I hired an autistic friend to read my latest essay for The Rumpus about my autistic brother, despite my lifelong involvement in his care. You can usually find us within the communities you are writing about—for example, Brian’s sensitivity reader is the executive director of the autism nonprofit he’s involved with—or from online databases, social media, or even your own personal author network. A sensitivity reader isn’t meant to “okay” your work—they’re meant to make it more compassionate and realistic, to give those authors a glimpse into their world, the nuances of their lives and the barriers they face. Just as a white person necessarily cannot truly understand how a Black person in America feels about certain topics, a wheelchair user will know more about how they interact with the world than an able-bodied person ever would. It’s not a matter of trying to protect yourself from criticism (and you’ll likely get that anyway; cannot make everyone happy). It’s about ensuring that your audience has realistic representation and does the least amount of harm.

Melissa Hart

Along those lines, what sort of reactions have you encountered from readers so far? Has following your suggestions led to a positive reception? Have you encountered any concerns or negative feedback?

Brian Tashima

Thankfully, the response I’ve received from the autism community so far has been overwhelmingly favorable. I tried really hard to make sure that, even though autism is the source of my character’s power, it wasn’t something that was romanticized; I always like to say that I’m not trying to minimize the challenges of autism, I’m trying to emphasize the positives. Probably one of the highlights of my writing career so far was when I received a letter from an autistic student saying “thank you for writing this, it’s made me feel so much better about myself.”

Naseem Jamnia

In general, I try to be as inclusive as possible in my work, even if I don’t have a particular disability or other identity. The novel I signed with my agent features a character with albinism, and though albinism isn’t a disability itself, it does usually come with visual impairment. I’m hoping that young readers with albinism or visual impairment are excited to see a character like them. Every time I write an identity not my own, I do a ton of research in the hopes of being compassionate and realistic.

One of my (currently tabled) manuscripts features an autistic and nonverbal narrator, because those are the types of characters I don’t see as a sibling to an autistic and nonverbal individual. I want to ensure that he has a voice, too, that someone shares his stories. But even so, I constantly wonder if my writing inadvertently silences an autistic writer’s voice. Ultimately, I would much rather put my work away than contribute to that.

Rachel DeWoskin

That’s a valid point, and I’m always aware of the potential dangers of writing someone else’s voice or experience. But I’m confident that you, in your thinking and writing, are treating your character with care and nuance. And creating more stories in the world that feature characters with all sorts of complexities is good outcome, a necessary one. We can and should also continue to promote work by authors who are or have historically been marginalized.

Brian Tashima

My feeling is that there’s room for everyone. Everybody has a different perspective and a different story to tell, so one person writing about a particular disability shouldn’t exclude someone else from doing so as well. In fact, the more the merrier, I say.

Naseem Jamnia

I partially disagree. I think we need to consider what stories are ours to tell and what are out of our lanes. What I really hope is that narratives including disabilities written by disabled people become as widely published as those by nondisabled people. Too often we hear, “We already have an x topic book.” In all cases, though, it’s important to do your due diligence and really consider what impact your words will have on the world before you put them out there. I strongly believe that as writers, we have a social responsibility to make the world a better, more inclusive place, but we must make sure we’re not contributing to harmful stereotypes or beliefs that we may not even realize we hold.

Melissa Hart

Are there any other recently published children’s books that you feel do a particularly good job of portraying nuanced characters with disabilities?

Rachel DeWoskin

Wonder by R.J. Palacio—which I read with my then fifth grader for our mother/daughter book club—is a good example of a story that gives kids a way to understand how to be their best selves in the world. When my kids, and the other girls in our reading group, encounter kids who look or seem different, they now make eye contact and smile, because, as they put it, “August taught us that’s what other kids like, too.”

Brian Tashima

A couple of my favorite books with autistic protagonists are Marcelo in the Real World by Francisco X. Stork and Mockingbird by Kathryn Erskine. I think those authors did a great job with their particular portrayals. But I do feel that even imperfect portrayals—and granted, there are a few of those out there—are a step in the right direction, because at least they invite discussion and feedback, which will hopefully lead to more and better examples of representation as we go forward.

Naseem Jamnia

Francisco X. Stork also wrote The Memory of Light, which is one of the best books I’ve read detailing teenaged depression and suicide (I say this as someone whose depression kicked in during childhood). Other great ones are Darius The Great Is Not Okay, Starfish, and Unbroken: 13 Stories Starring Disabled Teens. What I like about these titles especially is that (as far as I am aware) all of these authors have the disability they are writing about. I always encourage people to seek out books written by disabled authors. It’s also important to read/write non-“issue” books—that is, books in which characters with disabilities are just living their life, therefore normalizing their existence! I try really hard to normalize all marginalized identities by writing them in this way.

 

Melissa Hart, whose brother has Down syndrome, is the author of several books including the award-winning novel Avenging the Owl and the upcoming nonfiction work Better with Books: Diverse Fiction to Open Minds and Ignite Empathy in Children.

Brian Tashima serves on the board of directors of the Vancouver, WA-based nonprofit organization Autism Empowerment. He is the author of the Joel Suzuki series of novels.

Rachel DeWoskin is the author of the award-winning novels Repeat After Me, Big Girl Small, Blind, and the nonfiction memoir Foreign Babes in Beijing: Behind the Scenes of a New China. Her latest work, Someday We Will Fly, is forthcoming.

Naseem Jamnia is a former scientist and a current MFA student at the University of Nevada, Reno. They’ve published in The Washington Post, The Rumpus, Bitch Media, and more, and are the coauthor of Positive Interactions with At-Risk Children.