Most people would find the thought of going through life unable to speak hard to imagine. We talk so much every day! What could you do instead? Maybe write? But you can’t write either because your hands won’t listen to your brain. You can’t gesture. You can’t even walk. But you have a brain that’s insatiably curious, and you want more than anything to be understood, to have friends, to even be able to tell your mom you love her.
Welcome to the life of eleven-year-old Melody, the main character of Sharon Draper’s remarkable book Out of My Mind.
Melody has cerebral palsy (CP), an umbrella term for various real movement disorders that affect a person’s ability to walk, think, balance, speak, and even see. Children with CP have had seizures, co-occurring learning, and intellectual disabilities, and up to 10% of them will die before the age of 18.
In the book, Melody is blessed (cursed?) with a photographic memory. She remembers and can recall everything that has ever happened to her. She has so many ideas, interests, and thoughts she wants to express. But when we first meet her, Melody is confined to a wheelchair. She requires round-the-clock care and is unable to feed or dress herself due to CP. And at the age of eleven, Melody has never spoken a single word out loud. She does have a large Plexiglass tray attached to her wheelchair with some basic phrases on it, but life, even at the age of eleven, is so much more complex than what those few words can convey.
When she enters a public elementary school, she is grouped together with other children receiving special education services. Initially taught in a separate room, Melody notes that “our school began something called ‘inclusion classes.’ I thought that was funny. I’ve never been included in anything. But these classes are supposed to give kids like me a chance to interact with what everybody else calls the ‘normal’ students. What’s normal?”
As anyone whose brain or body works differently than the norm can probably tell you, this does not go well. Melody is subject to subtle (and not-so-subtle) shunning until, fortunately, a new teacher steps in and enforces consequences for the bullies. A few weeks later, one of Melody’s friends showed up at school with a programmable talking computer.
Melody knows that she needs a computer like that, too.
Once she is finally able to communicate this to her parents, they begin the long process of seeking approval for such a device. Again, as anyone who has navigated government assistance entities can tell you, this takes a long time. In the interim, Melody is sitting through classes whose content she has already mastered, struggling to make herself understood by teachers and caregivers, and even having difficulties telling her dad that her pet fish jumped out of its bowl.
But miraculously, the computer arrives. Melody and her family spend hours programming it with words, phrases, greetings, names, and anything else she might need. And when prompted, Melody is finally able to “speak” her first sentences:
“Hi, Dad. Hi, Mom. I am so happy.”
She uses her new computer to talk to everyone at school and soon discovers, to her delight, that she is finally able to answer questions in class. A LOT of questions, and all of her answers are correct. Melody soon tries out for the school trivia team and, after some resistance from peers and teachers, is accepted. The team does so well that they are invited to make television appearances and soon qualify for a national competition.
To know how Melody does on the team, one will have to read the book, as I do not wish to spoil anything more. Suffice it to say that her story is so remarkable because it’s realistic. And because it’s realistic, it certainly aligns with the Alliance’s mission of raising awareness and promoting inclusion of all learners.
Melody’s journey will be familiar to any parent of an exceptional child, anyone who works in social services, and those impacted by disability of any kind. I highly recommend this book to anyone who wishes to understand the inner world of a very bright person of any age.
