Beth Vrabel remembers sitting in the bleachers at her son’s baseball game when an unforgettable email appeared on her phone. A young girl with albinism had just finished reading her middle grade novel, A Blind Guide to Stinkville, the story of a 12-year-old with albinism and resulting vision impairment. “All of my friends are convinced that you wrote it about me,” the girl emailed to Vrabel, and went on to explain how thrilling it was to come across a protagonist like herself.
“It’s a moment you could almost lick the back of and stick to a wall,” Vrabel says. “It’s going to be stuck in my memory forever. There I was, sitting at a baseball game and crying because the letter meant so much to me.”
The inclusion of protagonists with disabilities in children’s literature is, overall, a relatively recent development. Nonprofits such as We Need Diverse Books and websites such as Disability in Kidlit emphasize the importance of all children getting to see themselves represented as a story’s main character. Authors of books for young people have called upon their experiences as parents of children with disabilities, and on volunteer work or extensive research, to create characters who reflect the physical, emotional, and developmental challenges that readers and their peers may face.
The story is more than the challenge
Vrabel and her husband often tell their two children, “Everyone has a challenge, and everybody has a story. Your story is so much more than your challenge.”
Their daughter, Emma, is a person with albinism and mild vision impairment. “If you meet my daughter, you’re going to see an incredibly vibrant, passionate person who happens to be visually impaired,” Vrabel says. “It’s something you tack on at the end when you meet her – it’s not first and foremost.”
When she was 12, Emma asked her parents for help in finding a book that featured a child who happens to be visually impaired. “We did a search and couldn’t find such a book,” Vrabel explains.
She describes the books they did find: teenage horror stories about albinos taking over the world, graphic novels in which people with a visual impairment are mystical or evil. “To see vision impairment become the centerpiece of every story, or to get that sense of albinos as ‘the other,’ is just devastating,” she says.
In the end, Vrabel ended up writing the novel her daughter requested to read. SkyPony published A Blind Guide to Stinkville in 2015. “Most kids do have challenges – one aspect that sets them apart,” she says. “There’s a stark need for awareness and shared experiences within the stories we write. But the challenge isn’t the center of a character’s life – or it shouldn’t be. Too often, we make it so.”
She followed up Stinkville with a companion book, A Blind Guide to Normal (SkyPony, 2016), which also features a middle-grade character with a vision impairment. Both books are very, very funny; at one point, her protagonist’s glass eye rolls across a cafeteria floor.
“Everyone has their own way of handling things,” Vrabel says. “My approach is to incorporate some humor. Kids have such a unique ability to transition from serious to silly in a moment. If you’re going to write for that audience, you need to embrace this. Humor can get you through anything.”
Her latest novel, Caleb and Kit (Running Press, 2017), is a story about the friendship between a neglected tween and a boy who has cystic fibrosis. This time, Vrabel found herself inspired by her son who has asthma and underwent testing as a toddler to rule out the disease. With a journalism degree and seven years of professional work in the field, she began to research cystic fibrosis with the goal of creating an authentic character.
“I must’ve read dozens of articles about cystic fibrosis, and watched YouTube videos and talked with people about their experiences,” she says. “I put out a call on social media and got wonderful responses from people who opened their hearts and didn’t shy away from answering painful questions.”
Some of these people became good friends. “The closer I became with them, the more imperative it became for Caleb to be authentic,” she says. “This isn’t a book about the disease. It’s about people first, about Caleb and his story. I’m happy to turn the tide in any small way that I can toward great stories about characters going through real-life experiences, who just happen to have something else going on, too.”
A diverse chorus of protagonists
As both a reader and a writer, Rachel DeWoskin is eager to experience the world from someone else’s perspective. Before becoming an author and professor of creative writing at the University of Chicago, she spent a decade in Shanghai as the star of a Chinese soap opera – an American woman surrounded by a culture very different from her own. “I accidentally modeled otherness in a very explicit way,” she says. “I’m always interested in questions of insiders and outsiders, of people on the peripheries.”
Her young daughter’s obsession with the 1939 film The Wizard of Oz, and her own horror at how the little people were portrayed, inspired her to write Big Girl Small (Farrar, Straus and Giroux, 2011). “The ‘munchkins’ are dressed in rompers and licking lollipops, playing something like babies, even though they’re dignified, professionally trained actors, and they have no names in the movie’s credits,” she says. “My daughter – who was a tall 4-year-old – effortlessly identified with Dorothy, and I couldn’t help but wonder what her life – and aspirations – would be like if she were in a different body. If she were a Little Person, she’d still want to be Judy Garland, not a ‘munchkin.’”
For her 16-year-old protagonist who stands 3 feet, 9 inches tall, DeWoskin interviewed dozens of kids and read medical books, novels, and social histories about little people. She also reached out members of the nonprofit Little People of America for their perspectives and attended one of their conferences.
“People told me their stories, showed me photos, talked about what childhood and high school were like. They showed me tools – the raised pedals in their cars, grabbers for reaching cereal on the top shelf at Trader Joe’s,” she says. “They were very generous about sharing their lives.”
Most of the fan mail she received after the publication of Big Girl Small came from little people thanking her for making Judy Lohden the protagonist. “She isn’t a prop or best friend or sidekick in the patronizing and unfair way I’ve seen so often – she’s not a ‘mini-me’ – what even is that?”
DeWoskin notes that the novel became a story about any girl in trouble, regardless of her size or shape or ability. “It’s about girls on the margins – in other words, anyone who has ever felt she isn’t normal,” she explains. “So, every girl.”
Her most recent novel, Blind (Viking, 2014), grew out of a discussion she had with her children about Menena Cottin’s picture book The Black Book of Colors (Groundwood, 2008), in which all of the pictures are invisible, but children can feel them on raised lines and read image-based descriptions in Braille.
“It’s a deeply empathic portrayal of the perspective of a little boy who isn’t sighted,” she says. “My daughters and I got into a profound conversation about blindness and what it would be like to read that book as a sighted reader and then lose your sight and learn to read it with your fingers and other senses.”
DeWoskin spent a year and a half learning Braille while working on her manuscript about a 15-year-old girl who loses her eyesight in an accident. “I also spent a lot of time thinking of what it would be like,” she says. “The terrible fear and frustration of having an accident that alters your perspective so dramatically that you have to recalibrate literally how you’re going to see, how you’ll make meaning of the world.”
These days, she finds that many authors of books for young readers are attuned to the importance of including protagonists with disabilities. One of these is R.J. Palacio, author of Wonder (Knopf, 2012), the story of a 10-year-old boy with a severe facial deformity.
DeWoskin and her older daughter chose Wonder for their mother/daughter book club. “That book lovingly and thoughtfully gives them Auggie’s point of view, so when they encounter kids in the world who look different or have some sort of disability, they think of him as someone they know,” the author says. “That book trained my girls to think, ‘That kid looks different and might be having a tricky day, so I’m going to smile and look her in the eye.’”
She urges authors wanting to include protagonists with disabilities to craft complex characters and involve people with first-hand experience who can make sure the story is nuanced before it goes to print. She hopes that young people with disabilities will continue to write as well.
“It’s time for us to amp up the diversity both of our protagonists and our authors,” she says. “Finding books that give us insight into experiences that aren’t ours, that offer more than one vision of ourselves in the world, is essential to being a 3-D human being.”
Flip the script
Brian Tashima is the author of the Joel Suzuki sci-fi/fantasy series. His protagonist is a teenage boy on the autism spectrum in a world where autism becomes a superpower. Tashima’s son is on the spectrum; at 12, he requested a book written just for him.
“I’ve been a musician and a songwriter my whole life,” Tashima explains. “I’d never written a book before. But I’m glad he asked me.” He plans 11 books in the series, with the goal of giving children with autism a relatable and empowering literary hero.
He’s found that books tend to portray autism as an obstacle that the character needs to overcome to achieve his or her goals. “I wanted to flip the script,” he says. “My character being on the spectrum is a source of magic and power. Even though my son has his fair share of challenges with communication and interpersonal skills, he does amazing things. He taught himself to use a computer before he could speak. He can memorize long strings of numbers. That’s an incredible power.”
He notes with gratitude the increase of characters on the spectrum in literature, in television programs such as The Good Doctor and films such as the newest installment of the Power Rangers series (the Blue Ranger is a superhero living with autism).
“I want them to just come out and identify as on the spectrum, and then back off and show that the character is just a person,” Tashima says. “We all have individual differences – there’s no need to single us out. Have your character do something unexpected, which will not only break down stereotypes for the good of the community but help your story to feel fresh and different.”
Tashima is on the board of directors for the nonprofit Autism Empowerment, which does programs and provides community services for people with autism. “It’s really important to me to make sure my characters are a respectful and accurate portrayal of people on the spectrum,” he says. “To that extent, I immerse myself in that world for my writing and my son.”
He also shows the rough drafts of his manuscripts to a “sensitivity reader,” someone who can vet the work for authenticity of voice and experience. Tashima’s reader is the executive director of the nonprofit – a woman who is on the spectrum. “She gives me her feedback on the characters, and if I’m missing the mark, she’ll let me know by saying, ‘I don’t think they would react like this,’ or ‘Your usage of this word isn’t appropriate for the community.’ If the disability you’re writing about is not something that you yourself live with,” he advises authors, “make sure you consult with someone who is personally affected by it before you complete your manuscript.”
Tashima describes his work as an adventure series first, with a hero speaks to young readers regardless of ability. In classrooms, when he visits to talk about his books, students thank him for writing stories that make them feel better about themselves and being on the spectrum.
“Kids who aren’t on the spectrum read it and say things like, ‘Now, I understand my classmate more. I understand why he acts the way he does.’ I love hearing that. I’m promoting acceptance in the community.”
Research and readers are essential
Corinne Duyvis cofounded Disability in Kidlit four years ago along with New York Times best-selling author Kody Deplinger, who was born legally blind. The site offers themed book lists, recommended reading, an excellent searchable database, and numerous book reviews.
Duyvis is the author of On the Edge of Gone (Abrams, 2016), a YA sci-fi novel about a teen with autism during the apocalypse. Diagnosed with autism herself, Duyvis is hesitant about books with disability as a major theme written by non-disabled writers. “Non-disabled people get to determine the entire narrative around disabled people in real life, in fiction, and in other media; people typically never consult us, or only as an afterthought or curiosity,” she explains.
She believes research and sensitivity readers like the one used by Tashima are completely essential when writing about any character with a disability. “We’ve spent four years putting together all kinds of advice for authors who want to write disabled characters,” she says of Disability in Kidlit. “Our reviews can be especially useful if people are interested in seeing how disabled readers perceive existing disabled characters.”
Vrabel agrees with Duyvis that writers wanting to incorporate characters with disabilities into their own stories for young people need to find a personal connection and do plenty of research. “Don’t just throw in a disability to add depth to a character,” she says. “That’s going to fall flat, and readers are savvy enough to know the difference.”
Contributing editor Melissa Hart is the author of Avenging the Owl, a middle-grade novel with a character who has Down syndrome, based on her brother. Web: melissahart.com