Like any middle schooler, I usually start my day with cereal. Every morning, after brushing my teeth, I have a bowl of Cinnamon Toast Crunch with milk, and try to catch all the flakes with my spoon before they go soggy. I get dressed for the day, and try to put on some makeup before my mom yells at me for hogging the bathroom. Then I go catch the bus.
While in most other ways I’m just your typical eighth grader, I also happen to have been born with Charcot-Marie-Tooth, a form of muscular dystrophy. Charcot-Marie-Tooth is a degenerative nerve disease that causes muscles in my arms and legs to atrophy over time. I wear leg braces and use a wheelchair to get around, and have an aide at school who helps me spin my locker combination. Every morning, an accessible bus arrives at my house to pick me up. Actually, it’s more of a van, with a “School Bus” sign on top.
For the most part, despite my wheelchair and knowledge of medical terminology (you build that kind of vocabulary when it’s about your own limbs), my daily reality is mostly the same as that of my classmates. I groan over the same math and science homework, giggle with the same friends, and like every other adolescent, I probably spend too much time on my phone. As a girl with a disability, I know that my story is not a sad one.
For the past four years, I’ve been trying to convince everyone else as well that my story doesn’t have to be a sad one. In 2013, I started a Change.org petition asking American Girl, my favorite doll company, to make a doll with a disability. As a longtime fan of the company, whose dolls are accompanied by books and movies with positive stories of girls overcoming challenges, I wanted to see a story with a heroine who was in a wheelchair like me. The petition got 140,000 signatures, and got a lot of news coverage. People clearly wanted to see kids with disabilities featured in an upbeat ways.
It would not be fair to say that American Girl completely ignores disability. They do make accessories for dolls like a wheelchair, crutches, a hearing aid and a diabetes care kit. In one of the stories there is a secondary character in a wheelchair; in another, a boy in the hospital with polio, and the 2017 Girl of the Year has a stutter. But these were not the characters I wanted to see.
I was inspired to take matters into my own hands and write a book of my own, starring a girl with a disability. I knew exactly what genre of book I wanted to write. I’ve never been a fan of “great children’s literature” that was somber or tragic. My friends and I have loved the Cupcake Diaries series, paperbacks with pink covers that described four best friends and their adventures together, making cupcakes. Not exactly heavy stuff, but fun to read. I wanted to write something like the Cupcake Diaries, but starring a middle-school girl with a disability and her filmmaking adventures with her best friends. Instead of making cupcakes, they would make special-effect YouTube video.
My older sister Eva helped me set up a Kickstarter campaign to hire an editor. We wrote the first draft of the book, called “Mia Lee Is Wheeling Through Middle School,” and found a literary agent. Using our money from our Kickstarter campaign, we hired someone to help us edit our draft into a polished copy, then sent it out to publishing houses.
When the responses started to come in, they were almost all the same: for a girl who was in a wheelchair with a degenerative nerve disease, Mia Lee was just too happy.
“I keep expecting more from the plotline than what’s currently here,” one publisher wrote. “What if it was about sisters who were twins, and one had Charcot-Marie-Tooth and one didn’t? That would create a more important conflict.” Another said that Mia Lee’s character didn’t seem suited for a lighthearted story. Finally, my agent told me, “I just don’t think people are ready for this type of story for this type of character.”
What she meant is that Mia Lee, my sassy, YouTube-loving heroine, differed too much from the convention of what a disabled kid is supposed to be like. There are very few stories about kids in wheelchairs, and there are even fewer with a disabled person who is cheerful and happy. Disability is always seen as a misfortune, and disabled characters are simply opportunities to demonstrate the kindness of the able-bodied protagonists.
For once, I want to see the disabled kids not in the hospital, but in the school cafeteria eating lunch with their friends. I wanted young readers to think of disabled kids not as miserable people to be pitied, but as people living normal lives in spite of their challenges. I want young readers to see disabled kids as friends, people to gossip with, to take selfies with and to go see movies with on the weekends. Not having books that show disability in a lighthearted way makes it harder for everyone else to see disability as a normal part of life.
Although I wasn’t able to find a publisher who believed in that kind of story, I used the funds from my Kickstarter to self-publish the book on Amazon. “Mia Lee Is Wheeling Through Middle School” was released last August at the National Youth Transitions Center, and has sold hundreds of copies to parents and kids around the country.
Since its publication, I’ve gone back to being your average middle schooler. Last month, I was in my school play, and now I am getting ready to graduate. On the weekends, I go to the library, where sometimes, I see my book on the “just returned” shelf. I often wonder who had it checked out. Maybe it was someone who would go on to invite the special needs kid in his class over for a play date. Or maybe, it was another kid with a disability, who could point to the pages and say: “She’s just like me! And she’s happy, too!”
Melissa Shang, a student at Gibbons Middle School in Westborough, Mass., is a co-author, with her sister Eva Shang, of “Mia Lee Is Wheeling Through Middle School.”
Copyright: New York Times, 2017
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