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Disability in Kidlit and the Changing Landscape of Disabilities in Books: An Interview With Corinne Duyvis

Corinne Duyvis

Diversity in literature has become a big topic for discussion in recent years. There’s no denying we need more of it. Author Corinne Duyvis is one of the people working to promote diverse titles and change the way we read about the world through her books and the blog she co-founded, Disability in Kidlit. Recently, she spoke to us about the work she’s done, her writing, and her own experience with disabilities.

TMS: What is the history of Disability in Kidlit? What sorts of responses has the blog gotten? How do you hope it will expand in the future?

Corinne Duyvis: Originally, author Kody Keplinger and I conceived of Disability in Kidlit as a temporary, one-month special online event. The goal was to discuss the portrayal of disabilities in middle grade & young adult books, whether through articles or reviews. Our biggest rule: contributors should only talk about their own conditions. Too often, disabled people are excluded from conversations about disabled people, and we wanted to take a different approach. We invited friends to join us, put out a public call for contributors, and lined up one or more posts for each day of July 2013.

The reaction was awesome. We had more posts than we knew what to do with, and people were excited about what we’d posted and grateful for what they’d learned. We were the only place talking about this topic to this degree, and apparently, there was a need for it!

We discussed and discussed it behind the scenes, and eventually decided to continue the site on a permanent basis. There was enough interest to sustain it for a while, and since we’d taken on an extra editor during the event—Kayla Whaley—the workload would be more manageable.

Two and a half years later, here we are: nearly two hundred thoughtful, informative posts, over ninety contributors, several themed events, and posts lined up through April. We’ve heard from disabled readers who are thrilled to see these topics being discussed; educators and booksellers who use the site as a tool to find books with good portrayals of disability; readers interested in learning more; and authors and editors grateful to find information on how to approach disabled characters.

I would be perfectly happy to keep going on this basis, but we do have various plans: for more themed events, for an official editors’ Seal of Approval to make it easier to find books we recommend, and more.

TMS: How do you feel about the depictions of disability in YA and MG literature right now? Do your writers find more good books or bad?

Duyvis: That’s a very good question! I should do a tally at some point. Glancing at our recent reviews, I think the answer lies somewhere in the middle. Most of our reviews are mixed. Most authors genuinely try, which means they’ll do research and want to treat their character with the utmost respect; that leads to a lot of good. At the same time, most authors aren’t disabled themselves, and don’t have a lot of pre-existing knowledge on disability tropes or the specific disability they’re portraying, so they’re starting from square one; that leads to a lot of missteps.

As a result, you might have a book with a disabled character who’s not painted as a victim, martyr, burden, or inspiration, with all the details/symptoms of the condition itself accurately described—which is great! These characters are very necessary and are a huge step above most portrayals. But these books might get other details wrong, like characters not knowing information about their condition that they logically would, or a certain assistive tool or physical restriction being used in the wrong situation or not even mentioned in situations where it should be. People who don’t live with the condition wouldn’t notice such details, but they can be enough to completely yank a disabled reader out of the book. That’s an example of a book that would probably still get a positive review, but with caveats.

More often, it’s a case of a disability that’s technically written correctly, but other elements of the portrayal chafe. The character’s role in the narrative could be solely to be a burden on their family, or the book could imply that disabled people might be better off dead. Or the disability is sensationalized or demonized. The author might have done tons of research on the disability itself, which is commendable, but as these portrayals still send extremely harmful messages, these books are likely to get negative reviews.

And of course, all of this is subjective. We’ve had reviewers disagree with each other before, and we as editors don’t always agree with our reviewers’ opinions either. But we as a website aren’t here to pass down a verdict; we’re here to provide a platform to the voices that are often ignored and pushed aside, even when it concerns topics about their identity.

As for how I feel about the portrayals personally? Honestly, it fluctuates. Sometimes I look at new and heavily promoted books and I just want to give up, since it doesn’t seem like anyone is listening or even cares. Other times, I see all the authors who genuinely try, all the readers who value the existing portrayals, all the books we’ve championed and all the new books we’re still discovering on a daily basis … it’s hard not to feel optimistic. I absolutely think we’re headed in the right direction.

TMS: You’ve been very outspoken about having autism and ADD. How do you feel these conditions have influenced your writing?

Duyvis: They’ve influenced it quite a lot, both directly and indirectly. A few examples:

Autism leads to obsessions, which means that when I’m interested in something—like writing, or a specific story—I tend to invest myself in it completely.

ADD leads to both distractions and hyperfocus, which means my writing process is a bit of a mess and swings from “can’t focus on anything for more than two minutes at a time” to “writing 9000 words in a day and barely eating.”

Because these conditions led to my being unable to hold down a regular job, I am able to spend my time on writing.

Because these conditions led to my interest in disability politics and representation, I’ve learned an awful lot about this topic over the years, much of which I incorporate into my novels and characters.

There’s probably more, but these are the ones that come immediately to mind!

TMS: What messages or themes do you try to get across in your stories?

Duyvis: I never start with a message or theme. I start with a story, a kernel of an idea or character, which I then develop.

In the development stage, themes might pop up. Many of my interests—regarding marginalization, social justice, identity—are applicable to many situations, so these original story concepts inevitably spark ways to dig deeper into the issue at hand. “Hey, if someone sees through another person’s eyes much of the time, their own sense of identity must be pretty messed up. How could that manifest itself?” and “If I’m writing a story about an autistic girl in the apocalypse—how would she respond differently? How would people feel about her presence? Hey, how does this apocalypse affect other disabled people, anyway, not to mention other marginalized groups?”

Like most authors, I don’t try to send a message with my work, unless it’s something obvious like “hey, consent is kinda important” and “maybe don’t consider disabled people as less valuable than other people?” and “teen girls, it’s OK to like yourself.” Most stories will reflect these sorts of opinions, even if it’s not intentional on the part of the author. But even then, I’m less interested in imparting that message and more interested in exploring that particular topic from the perspective of my characters, within the context of the story.

So do I go into a story with a message or theme? Nah. But am I aware of them and actively explore them as they develop? Absolutely.

TMS: Can you talk a bit about your upcoming book?

Duyvis: On the Edge of Gone is an apocalyptic sci-fi novel set about twenty years into the future. A massive comet with the potential to wipe out the planet is on its way to Earth; while people with valuable skills, resources, or positions are able to escape into underground shelters or generation ships, most others are out of luck. One of those people is autistic, sixteen-year-old Denise, who has long given up hope of survival.

Then, shortly before the comet hits, Denise finds herself on a generation ship by pure happenstance. She realizes that if she makes herself indispensable on board, she might be able to stay when the ship eventually takes off … but she doesn’t want to leave without her sister, who went missing days before the impact. Denise has to juggle her tasks on the increasingly panicky ship with her dangerous trips into the destroyed city of Amsterdam to find her sister, her struggles with her drug-addicted mother, and—as the pressure and chaos build—her own increasingly fragile mental state.

It’s part sci-fi and part disaster novel, with a heavy focus on character.

I’m so excited about the nice things people have been saying so far. Kirkus Reviews gave me a starred review and said Denise was “superbly nuanced” and the book is “life-affirming science fiction” and a “nerve-racking adventure.” Laura Ruby—who just won the Printz Award for the absolutely beautiful Bone Gap!—called Denise “utterly unique and ferocious” and said her “raw, honest voice and her gripping story will stay with [her] for a long, long time.” And Book Riot said, “On the Edge of Gone brings a dimension of reality to apocalypse stories that is sorely needed … Duyvis complicates the issue of privilege and raises the question of who—in the face of limited resources—is worth saving? And how does Denise herself define ‘worth’ in a world that values the things she is so often not? On the Edge of Gone is a rare gem of a book.”

I mean, if that’s not cool, I don’t know what is.

It’s out March 8, by the way!

TMS: Are there any books you would recommend that focus on characters with ADD or autism?

Duyvis: My absolute favorite is Anne Ursu’s The Real Boy. It’s a fantasy novel for middle grade readers that never actually uses the word “autism” because of its setting, but it’s very clear to anyone even slightly familiar with the condition. Although I try to keep an open mind for every book I read, I wasn’t particularly hopeful when I started The Real Boy. There have been far too many autism books that people raved about that I was horrified by. But from the very first chapter, there were lines that resonated with me so much I just wanted to scream with joy. Finally, I recognized my own reactions and thought processes and quirks in a book, and finally, the character who has them isn’t infantilized or sensationalized. He’s just himself, uncomfortable and well-intentioned and so very full of heart.

(Just writing this is making me want to re-read the book.)

If you want to read more about why I loved this one so much, I gave it a rave review at Disability in Kidlit last year. I highly recommend The Real Boy for younger and older readers alike, whether they’re interested in reading a wonderful portrayal of autism or simply looking for a thoughtful, beautiful fantasy story.

For more about Corinne Duyvis, you can visit her website here or go to Disability in Kidlit here.

(image via Corinne Duyvis)

Alex Townsend is freelance writer, a cool person, and really into gender studies and superheroes. It’s a magical day when all these things come together. You can follow her on her tumblr and see her comments on silver age comics. Happy reading!

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