Books used to be part of my prison.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,

Books used to be part of my prison.  Rows and rows of books meant for five-year-olds filled my bookshelves and reinforced the “experts’ ” views that I should be taught the simplest concepts over and over and over… Every time I read those books out loud and I stumbled over and skipped words my apraxic body told the experts that they were right about me.  I was humiliated and resigned to basic book reading continuing indefinitely. Last summer I learned to spell and Dana Johnson told my ABA therapists that I should have access to age-appropriate books, beginning with Copper Sun by Sharon Draper. 

The first thing I remember about this book is the way that it made me feel, like a thinking person, a person who could consider serious topics, instead of like a person who needed to practice reading stories that focused on relaying one or two basic lessons.  The next thing I remember about Copper Sun is overhearing my ABA therapist trying to convince my mother that the book was inappropriate for me.  A lot has happened since then.  A few weeks after I started Copper Sun,  my mother stopped all my ABA therapy.  When I read Copper Sun I had just started S2C and I wasn’t fluent on the boards yet so I couldn’t tell anyone how real the change was or how that one book made me believe that there was hope for me and my education.  When Dana Johnson presumed competence and pushed to give me a book meant for a teenager and not a five-year-old she opened a whole world of possibilities for me.  I am able now to express myself fully and choose my own books.  As I am writing this using a keyboard, I am remembering all that I have experienced through books in the 10 months since I read Copper Sun.  These books have allowed me to explore historical events (The Book Thief, by Markus S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,Zusak and The Good Earth, by Pearl Buck),  science fiction (Out of the Silent Planet, by C.S. Lewis and Foundation, by Isaac Asimov), fantasy (Life of Pi, by Yan Martel and the Harry Potter, books 1-5, by J.K. Rowling), ethics (Animal Farm, by George Orwell), family sagas (Homecoming, by Cynthia Voigt),  and more.  I am in two book clubs now,  and I am taking an AP English Literature course.  Books are an appreciable part of my discussions with friends,  and those relationships have grown as we have exchanged ideas about works of fiction. I have loved some of these books (Book Thief and Copper Sun), while others have been less engaging for me (The Good Earth and Homecoming). Some books have been interesting even though I did not expect them to be (Out of the Silent Planet) while others that I expected to love were soon too predictable (Harry Potter). Regardless, I learned from all of them.

While fiction has expanded my perspectives, reading nonfiction gives me the opportunity to delve into areas I love like astrophysics, space, and nature.  When I read the works of Carl Sagan (Cosmos),  Neil Degrasse Tyson (Astrophysics for People in a Hurry, Origins, and Cosmic Queries), Bill Bryson (A Short History of Nearly Everything), Aimee Nezhukumatathil (World of Wonders, In Praise of Fireflies, Whale Sharks and Other Astonishments)  and most recently the unique perspective of Chanda Prescod-Weinstein (Disordered Cosmos), which was recommended by a nonspeaking friend, my interest in those topics evolves and expands.  

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,Reading has also given me a way to truly accept that autistic individuals are both like and unlike me.  When I read Ido In Autismland by Ido Kedar I see our similarities and our differences.  I admire the feat of his compelling work of fiction,  In Two Worlds and it gives me the confidence to include publishing my own writing among my growing list of goals.  I’ve read books (The Reason I Jump, Naoki Higashida, Fall Down Seven Times, Get Up 8, Naoki Higashida, How Can I Talk If My Lips Don’t Move, Tito Mukhopadhyay, Carly’s Voice, Arthur, and Carly Fleischman) and essays  (Leaders Around Me: Autobiographies of Autistics Who Type, Spell & Point to Communicate, Life In Letters: A Book About Autism) written by other nonspeakers and poetry (Imane Boukaila, Hannah Emerson and Sid Ghosh) by nonspeakers that opened my mind to waves of thoughts that fuel my creative work and propel me to risk as they have by sharing vulnerabilities in my own poems. 

I have barely scratched the surface of all that books have done for me.  There are so many books I want to read and the list grows as I read more and more.  Books used to hold me back but now they are shaping my future. 

Amelia is an amazing artist and an advocate that was part of I-ASC’s SpellX and Boards & Chords.

The mission of I-ASC is to advance communication access for nonspeaking individuals globally through trainingeducationadvocacy and research I-ASC supports all forms of augmentative and alternative communication (AAC) with a focus on methods of spelling and typing. I-ASC currently offers Practitioner training in Spelling to Communicate (S2C) with the hope that other methods of AAC using spelling or typing will join our association.

2 responses to “Books used to be part of my prison”

  1. Gloria OByrne says:

    You have made the world a better place. Thank you for opening our eyes to Amelia, my beautiful grand niece. It is a sobering realization of how we misunderstand people who cannot communicate in the way we expect them to. Blessings to you and your good work!

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