“Can’t you just get hand controls? You can use your hands, right?”
This is the typical response I get from someone when I mention that I am unable to drive. The gaze of the non-disabled viewer rakes over me with skepticism and confusion. It’s quite similar to the male gaze, something I had learned about as an undergraduate Film Studies major, where women are objectified by the curious and intriguing gaze of a male spectator.
“No,” I try to explain. It has nothing to do with my cerebral palsy, the disability I was born with. “I have heightened sensitivity to sound. I have a startle reflex so if I become startled by sudden noises, I might lose control of the car.”
I have an invisible sensory condition known as hyperacusis. Sometimes it makes me hysterical.
Sudden loud noises cause my muscles to tighten and my mind to go into panic mode. The noise is overwhelming, filling every fiber and inch of my being with excruciating pain.
“What does it feel like?”
It feels like I’m experiencing sensory overload, sound pounding with augmenting reverberations filling my ears.
It feels like I’m locked in a room with only solid walls and no doors to escape, claustrophobia caused by noise engulfing me. Even with musician’s earplugs in my ears and my hands covering my ears, there is no escape.
I’m trapped by sound until it fades into the distance.
Motorcycles rush by amidst a blur of cars and city buses. The unmistakable wail of an approaching siren as a firetruck zooms down a busy street. The earsplitting crack of thunder that clashes against a dark and gloomy sky. A dazzling display of colorful fireworks that illuminate the night, but seem like bombs detonating inside my ears instead.
These are my primary triggers. Fireworks and thunder especially. The 4th of July is a dreaded holiday, one viewed from my perspective with overwhelming fear and deep-seated loathing. My attempts to drown out the sound with musician’s earplugs and noise-cancelling headphones feel futile, even when it does help dampen some of the painful noise.
In elementary school, I remember wanting to leave class early because the sound of the bell hurt my ears as it buzzed with sharp indignation. As a young toddler, the cacophonous din of the vacuum cleaner would cause me to throw a tantrum, body and mind rife with pain.
I wish I could say it’s gotten better. I wish I could say it gets easier.
It doesn’t. Sometimes I feel isolated by a misunderstood condition. It’s hard to explain to other people who don’t have sensory conditions that noise causes pain. And no, it’s not all in my head.
It’s present, alive and real. It’s part of who I am, part of my ever-growing, ever-changing narrative as a disabled woman.
I have hyperacusis.
And sometimes it makes me hysterical.
Lara Ameen is a screenwriter, disability advocate and PhD student in Education with an emphasis in Disability Studies at Chapman University. She holds an MFA in Screenwriting from California State University, Northridge, and a BA in Film Studies with a minor in Disability Studies from UC Berkeley. Her research and creative interests focus on disability representation in the media, particularly film, television and new media. Her scripts have placed in ScreenCraft’s Bahamas Screenwriter’s Residency Program, Austin Film Festival Screenplay Competition and Fresh Voices Screenplay Competition. When she’s not writing TV or short film scripts, she writes paranormal fantasy novellas about queer disabled characters who save the world. She is also working on her first novel.
Check out her blog