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Beyond the Magically (Dis)abled

we need diverse booksThis past May, Twitter broke out in a glorious maelstrom of activity around the hashtag #WeNeedDiverseBooks that was thrilling to follow and — once I realized the plea wasn’t only for more books with central characters of color — even more thrilling to join.

As the mother of a teenager with autism, the founder of a center that supports children with special needs, and the author of a YA novel in which two characters with disabilities fall in love, I jumped on board, posting my first Twitter photo, which by the end of the day had a hundred retweets, about ninety-seven more than anything else I’d ever posted. It was all very heady and exciting. I had to sit down to catch my breath. Now that some time has passed and my breath has returned, I wonder what this will all mean for books featuring kids with disabilities.

There are 1.2 million teens between the ages of sixteen and twenty living with a disability in the United States — a huge minority group but also arguably the least well organized in advocating for representation. Not a big surprise when disability covers a wide spectrum of subgroups that often hesitate to align themselves with one another. We assume that the blind teen doesn’t have a lot in common with her autistic peer; that the physically disabled don’t want to get lumped in with the cognitively disabled; that a deaf child isn’t going to “see herself” in a book about a girl in a wheelchair. We parents are guilty of erecting these walls every time we highlight differences between our children (“Not all autistic kids are cognitively delayed!”). Instead of recognizing the common ground and similar struggles our children share, we’ve bought into the assumption that one group can’t relate to the other’s struggles.

keyes_flowers for algernon Then it occurred to me: why do I assume my son with autism can’t relate to, say, a story about a girl in a wheelchair, when I used to, easily? As a teenager, some of my favorite books featured main characters with disabilities, and I must not have been the only one because they sold like crazy. Who else remembers loving Karen, a memoir written by the mother of a plucky young girl with cerebral palsy? Or The Heart Is a Lonely Hunter by Carson McCullers, with a deaf-mute protagonist? Flowers for Algernon by Daniel Keyes, about Charley, the cognitively disabled man miraculously “cured”? Or Joanne Greenberg’s classic I Never Promised You a Rose Garden, which took us inside the mind of a schizophrenic teenage girl? All beloved bestsellers (and the latter three made into beloved movies). All featuring main characters with disabilities. Why did this once popular trend die away?

I would argue that my old fascination with those stories must have (at least in part) sprung from the mystery their main characters represented. I came of age before federal law mandated the inclusion of students with special needs in public schools. I never saw anyone with Down syndrome until I was in eighth grade and met the thirty-year-old daughter of my grandmother’s friend. In my diary, I noted that she looked like I imagined a Martian might.

I cringe at this now, but I also think: no wonder I was enchanted by Flowers for Algernon and Of Mice and Men. It was a little like reading about another world.

Now the world looks a lot different. According to the CDC, nearly ten million children in the United States have a developmental disability, a seventeen percent increase in just over a decade. This is only one subgroup, which doesn’t include children with physical impairments, chronic conditions, or mental health issues. Include those and it’s not an exaggeration to say disability is everywhere and yet — puzzlingly — characters with disabilities are less prevalent in books today than they were in the past. To take a quick snapshot (and, admittedly, comparing apples to oranges), last year’s ALA list of Best Fiction for YA featured 7.8% authors of color, 4.9% LGBTQ main characters, and only 2.9% characters with disabilities.

Out of My MindOf course there are exceptions. Forrest Gump (starring that ping-pong and running savant, among other talents) paved the way for a legion of magically abled disabled characters. Deficient in one area, they’ve been given the ability to fly or read minds or otherwise more than compensate for their limitations. Following this trend another one has appeared, by which two of the best-selling (and best) recent books about disability focus on characters who are challenged physically but not cognitively. In Out of My Mind by Sharon Draper and Wonder by R. J. Palacio the protagonists are exceptionally appealing, bright, funny, thoughtful creations. Melody might sit immobilized in a wheelchair, but she’s the smartest girl in her class. Auggie is also well read, advanced in science, and, as he and his friend remind us more than once, “He doesn’t have special needs!”

It’s almost as if we’re ensuring acceptance of disabled characters by making them extra smart and appealing. I fault no one for this — in fact, I’ve done it myself in my own book, Say What You Will, in which Amy, nonverbal from cerebral palsy, speaks through a computer with wisdom that, well, I never had as a teen. It’s not a crime, because many kids with disabilities do have normal intelligence, and their experience living as an “outsider” has made many of them wise and thoughtful beyond their years, but I want to make a plea to myself and others. Let’s all remember, as readers and writers, that the best stories — and the most lasting — are the ones that sound the grace note of truth.

Reread Flowers for Algernon now and marvel at the prescience Keyes had for the debate about “cures” and what is lost in the impulse to eliminate disability from our world. More importantly: the operation Charley undergoes is science fiction, but the character is not. Charley is a complicated, multifaceted man in every phase of the story.

mcgovern_say what you willLiving with disability is a fascinating and complex journey. It is a balancing act of tolerance and love. I don’t just want books that put a few kids in wheelchairs, I want books that tell the truth of this experience in all its complexity. As much as I love The Curious Incident of the Dog in the Night-time, I’d love to read about more characters with autism who aren’t high-functioning. I want to see kids who are distant and difficult and the wonder of how they are loved even so. We don’t need to sell disability or put a polish on it. We need to show the humanity that lies beneath the difference. The real stories will resonate not just within this community but with every reader like the one I was — pulling books with disabled characters off the shelves because those were the good ones.

From the November/December 2014 issue of The Horn Book Magazine.

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Comments

  1. I remember the book “Karen” by Marie Killiea! I bought this book at a book fair in 3rd grade and read it over and over. There was something about the Killiea family that really touched my heart. I’ve never known someone who suffered from cerebral palsy as did Karen, but that didn’t matter. I loved this book and the story of perseverance it told. It was my favorite childhood book, and I still own it, and it’s sequel, to this day. Yes, we do need more books today that “show the humanity” of the disabled. Thank you Cammie, for the mention of “Karen” in your article! Much appreciated.

  2. Hi There

    I have just finished reading to my son a Amazon Kindle book called ‘Four Wheeled Hero’ based around a young boy named Tommy who is wheelchair bound and his best mate Smithy. Every night I would read him one chapter before he went to bed, and he could hardly wait for bedtime to come to hear the next. The book is very funny as well as having a story line that keeps you glued to the book from start to finish. The reason why I have sent this note to you is the fact that I have never seen a book published where a child in a wheelchair is the hero of the day and as such would give that feel good feeling to any child in that situation who reads it, as it did my son. As a mother it was wonderful to see his face as we worked our way through the chapters, watching the enjoyment and excitement he showed as the two boys followed their quest. I have added a couple prints from the book that can explain it better than me. An excellent book for all children young and old. There are only a few books with disabled children in them as I suppose they are not seen as interesting, but this book changes all of that.

    This is an Amazon Kindle Book and if anyone cannot afford to buy the Kindle Tablet then go onto the Amazon Kindle Book web page where you will find a free kindle app available to download onto PC’s mobile phones etc. This app gives you all of the Kindle Tablet program to allow you the get your copy of Four Wheeled Hero as well as thousands of other titles, some free of charge.

    Best Regards

    Brenda Green

    This exciting adventure story for children will have all lovers of traditional fantasy ‘boy hero’ tales on the edge of their seats until the final word.

    The story has two young teenage heroes, Tommy and Smithy. But this is a children’s fantasy adventure story with a difference because one of the heroes, Tommy, is confined to a wheelchair following a terrible accident.

    The story begins when Tommy is sent a magical stone from his Uncle Bill who is on an expedition in the Brazilian Rain Forest. Bill was given the stone by a village chieftain after he saved his son’s life. He was told that the stone had magical powers so he sent it to Tommy for his stone collection.

    But it turned out to be much more ‘valuable’ than for inclusion in the stone collection for, a couple of days later, Tommy’s father, who is the manager of the local bank, is kidnapped by robbers when they realise that the alarm system has been set and they have to wait until Monday when it would allow the vault to be opened.

    When Tommy and Smithy decide to try to track the robbers down the real power of the magic stone is revealed. This power is that when Tommy thinks of something the stone makes it happen so the robbers are in for some real surprises as Tommy’s wheelchair develops some very unusual and effective weapons and powers. So, with the help of Smithy’s cat, Tiger, who more than lives up to his name, the robbers are taught a lesson they certainly don’t expect.

    This is an exuberant and exciting children’s adventure that will appeal to young and old alike.

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