Children use toys and media characters to spark their imaginations and cast themselves as the star of their own stories. Through play, they connect with other kids and dream about their future. Options are few, however, for kids who wear a device or otherwise look “different” to see themselves reflected during play.
By Jill R. Dorson
Melissa Shang has Charcot-Marie-Tooth (CMT) disease and spends much of her time in a wheelchair, though she can stand and walk short distances with her ankle foot orthoses (AFOs). As far as the 14-year-old is concerned, however, her physical ailments don’t make her different from an average teenager.
She’d like to see the media and toy industries agree, and give her more characters—on television, in the movies, in books—and dolls that look more like her.
“I’ve read a few books that showed what living with a disability was like pretty well,” Shang said. “In the ‘Arlene on the Scene’ series, the main character has Charcot-Marie-Tooth, just like me. She uses leg braces, and in middle school she felt very self-conscious about herself and wanted to be like everyone else, but she finally just accepted herself.”
Shang has already done more than accept herself. She’s busy trying to get other people to accept kids like her or, better yet, understand them.
“A lot of people seem to think that I sit around all day and think about my disability and all the things I can’t do,” said Shang. “But I don’t. I’m a teenager and I like talking about boys and crushes and I also get on my phone a little too much. I look forward to going to school and seeing my friends. I don’t let my disability define me.”
In fact, Shang, who is in eighth grade and lives in Newton, MA, has been making her own grassroots effort to get the world at-large to understand better what it’s like to have a disability. But she’s finding what orthotists, physical therapists, and other lower extremity practitioners already know: there are few books, games, films, television shows, or toys that represent children with a lower extremity disability. When most professionals in the field are asked what’s out there for kids, they’re stumped.
Gordon Ruder, BSc, MSc, CO(c), FCBC, a Canadian orthotist who owns Boundless Biomechanical Bracing and is the programdirector at George Brown College’s Department of Prosthetics and Orthotics in Toronto, said there’s not a lot available for practitioners to give to kids who are getting their first device.
“If it’s going to come from anywhere, it’s going to come from a patient-centered group,” he said. “And usually in the form of a pamphlet or on their web page versus something children can connect with.”
This anecdotal evidence is backed by the book Disability and Popular Culture: Focusing Passion, Creating Community and Expressing Defiance, by Kate Ellis, PhD, a senior research fellow in the Internet Studies Department at Curtin University, Perth, Australia.
“There is a distinct lack of research into disability toys from a cultural studies perspective,” Ellis writes. “Indeed, when it comes to disability and toys, the majority of academic discussion centres on developmental psychology, physiotherapy and the construction of special toys for children with ‘special needs.’ In short, the discussion is entirely medicalized.”
Despite limited resources, professionals say entertainment that either reflects the disabled community or is adapted to include it is critical to the mental well-being and self-esteem of children with a lower extremity disability.
Seeing a person—not a disability
“I think the more society is exposed, the more these characters are humanized,” said Dana Dempsey MS, CTRS, the director of the Therapeutic Recreation Department at Texas Scottish Rite Hospital in Dallas. “There’s a certain amount of wanting to empathize as well as wanting to support and advocate once you know the character. What happens in society is that those [children] are somewhat separated and [because of that], being disabled becomes a term more than a face or personality.”
Board and table games, said Dempsey, are the obvious entertainment options that make things “even-steven”—meaning that all can participate. Books and television would seem the same, but as both Shang and Dempsey point out, there are many examples of disabled characters as “sidekicks,” but few as protagonists.
Shang in 2014 started a petition asking the American Girl doll company to create a “Girl of the Year” with a disability. The company does have wheelchairs and two kinds of crutches available on their website as accessories but has not made a key character who is wheelchair-bound or wears AFOs. The 2012 “Girl of the Year” doll, McKenna, did have a tutor named Josie, who was in a wheelchair, but Josie wasn’t the main character.
“Her job was to make the main character look better,” Shang said. “That’s not what people with disabilities are all about. The ‘Girl of the Year’ is my favorite part [of the American Girl brand], they make a doll [with a story] that will go out and conquer something. Through them, I was able to put myself into able-bodied things, like dancing, gymnastics, or horseback riding, but I’ve been disappointed because I was tired of seeing characters I couldn’t relate to.”
Shang’s online petition has netted more than 140,000 signatures in support of an American Girl doll with a visible disability. Her plea was moving and direct:
“Being a disabled girl is hard. CMT prevents me from activities like running and ice-skating, and all the stuff that other girls take for granted. For once, I don’t want to be invisible or a side character that the main American Girl has to help: I want other girls to know what it’s like to be me, through a disabled American Girl’s story.”
The company contacted Shang and thanked her for her support but has not yet made a doll whose life story includes living with a disability.
Dempsey, as well as other professionals in the industry, are somewhat stumped when it comes to finding books, games, films, or anything else that represent disabled kids as more mainstream.
Toys “R” Us has a section on its website featuring toys for “Differently-Abled Kids,” while FatBrain Toys has a section for kids with special needs; yet, neither offers dolls or toys that represent the physically disabled population. Most are geared toward children with a learning or mental disability.
When it comes to media, gaming, or literature, the entertainment options for kids with a disability widen a bit. Dempsey pointed out that many video games are perfect for kids with a disability: Whether it’s a dancing game or air guitar or even Mario Bros., these kinds of games allow disabled kids to participate on a leveled playing field.
“The kids can be with each other and be engaged together,” Dempsey said.
Ruder said he and his colleagues mostly have given pamphlets to patients or directed them to a special interest group for support. That’s about to change: Ruder recently oversaw a student project at George Brown that led to the soon-to-be-published storybook, “Beau and His New AFO.”
When Stephanie Blunt, an orthotic technician who graduated from George Brown College and is currently on pregnancy leave, was a student in Ruder’s program, she and two of her peers, Amelia Levick and Katrina Whitmell, decided to write a book for kids with AFOs.
Hamilton Health Sciences, one of the largest hospital systems in Canada, partnered with the students, and will publish “Beau and His New AFO” later this year. Hamilton Health will distribute the book, which is geared toward teaching elementary-aged children about their device, to patients in its system and will create an audiovisual version that can be played inside patients’ rooms.
“We wanted to give kids the ability to normalize what it means to have an AFO or device,” Blunt said from her home near Toronto. “They never see kids with an AFO or in a wheelchair on TV or in a book. So, we wanted them to be able to say, ‘Hey, there’s kids just like me who wear devices.’ There are two characters, one who is ambulatory and one who is in a wheelchair. That’s important because not every AFO user can walk.”
During her training, Blunt recognized that kids with a disability wanted to “connect with their toys and dolls” just like the average kid. She even worked with a child who asked if AFOs could be made for her American Girl doll.
“It’s unfortunate that they can’t pick a wheelchair or an AFO for their toys,” Blunt said, “It makes them feel outcasted.”
Although her book is more of an educational tool than a mainstream storybook, it is designed not only to help kids understand what they can and can’t do with an AFO and how to care for it, but to give them a tool for explaining to other kids what having an AFO means. Blunt hopes children will take it to show-and-tell and begin to educate their classmates about the device they use.
Shang has also written a book. “Mia Lee Is Wheeling Through Middle School” features a main character who wears AFOs and is in a wheelchair. The idea behind the book isn’t so much to educate those around her but to create a strong main character whose disability doesn’t define her. The book was published in 2016 and is available through Amazon.
“Mia Lee is a star motion-picture maker and is trying to become the video club president. She meets a lot of people and makes a lot of new friends and she has to figure out if people are trying to be her friend because they feel sorry for her or because they really want to be friends,” Shang said. “She grows from this experience.”
Learning by watching
For Dempsey, the recreational therapist, both Shang’s and Blunt’s books would fit right into her goal of helping to make her patients as independent as possible. When working with kids with disabilities, she has learned that, like other kids, they want to fit in and that they often learn by watching. Through Texas Shriners, she takes a group of her young patients with disabilities to specialty camps every year, where they can play with and learn from other kids with similar conditions. She believes the camps provide the opportunity for kids to see how others cope in like situations, but she’s also seen that the development within this community is the same as it is anywhere else.
“Just like typically developing kids, they see each other on the playground and, well, how you do think kids learn how to use the monkey bars? They watch other kids,” Dempsey said. “It’s the same thing. If kids with disabilities can see how other kids are doing it, even if they can’t do it the same way, they can take something away from it.”
Patrick DeHeer, DPM, owner of greater Indianapolis’ Hoosier Foot and Health and team podiatrist to the Indiana Pacers, said he has seen little he can use in his practice to either educate or entertain kids who wear devices. Because of that, he directs kids and their parents to stay active in whatever way they can—running, jumping, swimming, or any other activity. Of particular note, DeHeer said he believes that, for kids with AFOs, baseball is a sport many can reasonably participate in.
“Getting an AFO into a baseball cleat isn’t an easy thing, but I’ve had kids who have played baseball,” he said. “It’s a sport that kids with AFOs can be somewhat successful in.”
He is enthusiastic about books like Blunt’s.
“I don’t have anything like [‘Beau and His New AFO’],” DeHeer said. “But I think it’s brilliant.”
The author thinks so, too.
“This is a niche that is really untapped,” Blunt said. “I think it has great potential for our population. And we made it generic on purpose, so we could adapt it to kids from another population, like kids with spina bifida or cerebral palsy.”
For Shang, while putting disabled kids front and center is something of a passion, it is more of a hobby than a feature that defines her. But as a disabled person herself, she’d still like to see the larger world acknowledge her existence through characters—whether physical, like dolls, or in books, games, magazines, or films—who are more mainstream than disabled.
“I want people who don’t have disabilities to have a better understanding of what it’s like to live with a disability and what our lives are really like,” Shang said. “And I want people with disabilities to know that they can succeed and to see that they are properly represented.”
Jill R. Dorson is a freelance writer in San Diego County, CA.