The first time I read Wonder by R. J. Palacio, my son Charlie, who has cerebral palsy, was not even two year’s old. I was in a constant state of vigilance bordering on panic while trying to monitor his tracheotomy and g-tube and oxygen levels. I remember being jealous of Auggie—of what he could do despite his disability. He was so smart and he was funny and seemed to mostly have his act together. But my Charlie could not talk and I did not know if he would. He also couldn’t crawl or walk or feed himself. When you first met him, you had to really work to get to know him. That future where he would make friends or enemies seemed illusive at best. But as he grew older and learned to use his speaking device and his wheelchair, the world became more accessible to him and he to it. He began to want to be known in that way that we all want to be known—for our nuances rather than labels.
This is the story I wanted to tell – of people reaching big no matter their circumstance – so that any person of any ability can relate.
When I sat down to write Roll with It, it wasn’t with disability in mind. It was a story of a person striving to be understood on her own terms. Though Ellie has cerebral palsy, she becomes known for so much more than her wheelchair. She is tough and loving in surprising ways. She moves to Oklahoma with her mother to help take care of her grandfather who has Alzheimer’s disease. They move into a trailer. It’s tiny. She shares a bedroom with her mother. And all the conflict of being in such a confined space with family ensues. But Ellie has purpose. More than anything, she wants to be a baker. She’s always in the kitchen, honing her skills and writing letters to the chefs whose recipes she tries. She dreams big. And she makes two friends in the trailer park that have big hearts and hopes too. Which is my point. We all aspire to something. This is the story I wanted to tell – of people reaching big no matter their circumstance – so that any person of any ability can relate.
Writing is activism in the best sense.
Books are built-in doors to other worlds and what better way to change the dialogue when it comes to disability than with a book? Mark Haddon’s The Curious Incident of the Dog in the Night-time, Sharon Draper’s Out of My Mind, Lynda Mullaly Hunt’s Fish in a Tree, these stories, and so many more, are invitations for the rest of society to enter into the special needs community and see and understand. They are seeds of empathy waiting to be planted.
Writing is activism in the best sense. It presents worlds with a cornucopia of multi-faceted characters, because no one is just one kind of person. We need to read of people whose stories bring much more than their labels to light. We need fighters and bakers and dreamers and gamers and gardeners and musicians and mathematicians and comedians. We need it all if we’re aiming for truth, which is why I wanted Ellie’s disability to be part of her story, not the whole.
That’s what it is for my son who loves math and sprinkle cookies and Johnny Cash and also has cerebral palsy. I wrote Roll with It for him, so he can see a world in which someone lives a full life regardless of whether they walk or roll.
Jamie Sumner is a special needs mom and author.
Discover her new book, Roll with It.
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