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By: Ben Johnston and Luke Trayser
Imagine waking up to find you’re a foreigner in your own body, and you suddenly can’t communicate as you used to with the people you love. What would you do? How would you adapt? How would you survive?
This was the scenario that greeted Jean-Dominique Bauby in December 1995. The brilliant French journalist and editor of Elle magazine suffered a massive stroke, leaving him in a coma for nearly three weeks. When he finally woke up, there was a chasm between his mental acuity and his physical abilities. While his brain was fully aware and active, his mouth, arms, and legs were paralyzed.
But he could still blink.
And so, with the help of his interlocutor, Claude Mendibil, Bauby wrote the book The Diving Bell and the Butterfly with hundreds of thousands of blinks. He chose the title because his body’s prison-like state became a diving bell—the heavy brass apparatus housing divers below the sea—while his mind, the butterfly, gave him the solace of endless fantasies and memories.
Bauby planned and conceived the book entirely in his own head. The writing process involved Mendibil slowly reciting the alphabet over and over until the correct letter was reached. When she said the letter he wanted, Bauby blinked. In a wise move, and to make dictation a bit smoother, Mendibil listed the letters by frequency, not alphabetically. Each word, on average, took roughly two minutes to write.
Bauby died of pneumonia days after his book was published, but his story lives on. The book became an international bestseller and was turned into an acclaimed feature film. (If you have not yet seen it, you should seek it out. It has a 94% critic rating and 92% audience score on Rotten Tomatoes.)
It’s hard to imagine a more productive life after locked-in syndrome. It also serves as a reminder that human expression is always at the mercy of physical capability. Without a partner to receive, document, and interpret Bauby’s incessant blinks, he would have had no means to communicate. His story would never have been written.
Students with complex needs share a plight that’s drastically similar to Jean-Dominique Bauby’s. Whether the needs are physical or cognitive, it’s often not clear what writing looks like for kids in self-contained special education classrooms. If writing is merely seen as letter forming, the inability to form those required letters is an instant and permanent stop sign. Bauby was fortunate that he was not stuck in his bed with his brain in a jar, but many students are not as lucky. Imagine how many stories live inside our special education classrooms, yearning for a chance to be told but limited by letter forming. Each student has a story, but for some, that story is trapped inside and needs means to be brought out in a healthy and useful way.
Simply put, when students can’t form letters, teachers often can’t teach writing. The challenge for educators: pull out what’s inside. This often requires the belief that there is more than what is seen on the surface.
We may not pull students out of catatonic states, or transpose a life story that becomes a bestseller. But we do have an opportunity right in front of us to awaken the stories inside our special education and autism classrooms. This is why we believe it’s important to develop instructional resources that keeps this mindset at the core of special education programs.
As educators, we have the same opportunities as Claude Mendibil. We can awaken something powerful in our students just as he did for his patients. To recognize it and bring it to the surface so it can be expressed is to give students the gift of the freedom and wonderment of life.
That’s what First Author was created to do. It’s our special education writing curriculum that was developed specifically for students with autism and other complex needs. It helps prepare students for the alternate assessment, but most importantly, it helps teachers show their students that they are authors who have the power to share their stories.
For more information on First Author and to request a sampler Click Here