Use Your Words
By Jamie Pacton
Lately, I’ve been thinking a lot about words—how I use them, how my non-verbal son tries to use them, and how people who have been traditionally left out of the conversation about themselves use them.
I’ve been thinking about how Martin Luther King and Raif Badawi (the Saudi blogger now being tortured for creating a liberal blog) have used their words to fight injustice, give voices to marginalized groups, and who suffer deeply because of their what they have to say.
I’ve been thinking about people like Amy Sequenzia, a non-verbal disability advocate who’s writing to change how people perceive autism, to mourn autistic people killed by their caregivers, and to raise her voice against so-called advocacy groups like Autism Speaks, despite all the resistance she’s facing.
And I’ve been thinking about the words of my friend Emily’s 15-year-old daughter, Reanna, a waifish self-proclaimed feminist with a big laugh, a keen intelligence, and a love for books.
Reanna’s got Cerebral Palsy, which makes her hands shake, her back ache, and her voice slower than her brain. But she has a lot to say, and she’s letting me share something with you here. Reanna wrote the poem below, “School is Hell” when she was just 12. There’s a searing loneliness in the poem that makes my heart hurt, but there’s also insight that can help all of us parent, teach, and empathize with our kids with special needs a bit better.
Each semester, I teach “What I Saw” by Kitt McKenzie in my English Composition classes. As my students and I discuss the writing choices McKenzie makes and the actual substance of the essay (it’s about an autistic girl watching the way a non-verbal autistic boy’s being treated by those who are supposed to help him and what he might be trying to say through his behavior), it blows my students’ preconceptions about disability and autism wide open. It challenges them to think beyond their own experiences, and it makes them re-see a familiar activity like high school gym class from an unfamiliar perspective. I think such a re-visionining and listening to the words of those we think can’t speak is a necessary part of advocacy (and probably also our humanity). As such, I’ll be adding Reanna’s poem to my classes’ reading lists in future semesters, as I think it will move and challenge my students as well.
And now, without further ado, Reanna’s words about her “Inclusive” experience at school.
School Is Like Hell
By Reanna Hensley
School is like hell,
Waiting for the day to end,
Only to start again.
Everyday a million conversations happen,
Not one with me talking,
Making myself ask
Am I the ugly duckling?
My mind acts like lightning,
Words racing through my mind,
Finding five answers to each question,
When I speak everyone chuckles,
Making my knees buckle.
My disability is like the bad grade that never goes away,
Always having to deal,
Trying to move past,
But how do you when things always remind you of what you can’t?
Drag the cat out of the bag,
Say your bashing to my face,
I don’t want to guess,
I can’t hear your comment in space.
Music is like my safety blanket,
A doom, a boom from the drums,
Pierce the Veil and Black Veil Brides putting my feelings into songs,
Drumming filling my ears,
Going to my fantasy land.
I keep waiting, wanting, wishing for a friend,
Being ignored all day at school,
No one getting that I am a human being,
Not an emotionless building,
School is my nightmare that never ends.
About the Author
Jamie Pacton lives, teaches, and writes near the shores of Lake Michigan in Milwaukee. She’s a Columnist and Contributing Editor at the Autism and Aspergers Digest and her work has appeared in The Writer, Cricket, Parents, and many other publications. When she’s not grading papers or at her computer working on her YA novel, she’s usually at the zoo, park, pool, or art museum with her two young sons (one of whom has autism, and both of whom are magnificent). You can learn more about Jamie at her blog, www.jamiepacton.com.