The Privilege of Deafness
FOR FILMMAKER CHANTAL DEGUIRE, THE ABSENCE OF HEARING ISN’T A LOSS — IT’S THE GAIN OF A RICH CULTURE AND COMMUNITY.
Iawoke to see wires leading to an infant crib and a man in a lab coat standing at the foot of my bed. He dropped a form on the table beside me and left. As the words came into view, I smiled. Titan, my son, is deaf. I doubt my parents felt that happiness when they learned my older sister and I are both deaf. As a strong Catholic, my mother likely took it as punishment from God.
It was the early 1980s in Ottawa. I was two years old, playing in the living room with my favourite stuffed animal, when my world stopped. My parents directed me to a huge speaker, turned the volume to the max, and ran from the room. I stood there, confused and alone, the speaker blasting.
Tests later revealed that I was born with severe to profound hearing loss — that’s the medical term, anyway. All I knew was that my parents were like pantomime puppets without sound, just gesture and expression. Unable to participate fully in their world, I created an elaborate imaginary realm, starting with the monster beneath my bed. At first he haunted my dreams, but eventually I befriended him. Others soon joined him in a vivid imaginary universe.
Still, I struggled to speak. Words had to be repeated, consonants practised. By age four, I could talk and lipread fairly well, but I preferred the beautiful 3D world to the one-dimensional oral world that seemed flat and unfocused.
Once in school, I sat in class, eyes glazed, unable to follow. I hated the big boxy hearing aid I had to wear strapped to my chest. Other kids stared at me and the cumbersome FM system hardly helped — though sometimes I could hear the teacher pee if she forgot to turn off her microphone.
No one seemed to notice — not at school or home — that treating me like a hearing child wasn’t working. While other students raised their hands, laughed and talked, I retreated into my daydreams. There, I drew and created my own complex cosmology — an imaginary world with an alphabet, intricate customs, a coding and mathematical system. This universe had no barriers. Unlimited. Free.
I was 11 by the time anyone at school asked why I’d been left behind academically. By then, I’d discovered video-game programming, and started a lunchtime computer club. Intrigued, our new principal looked into my records and learned I hadn’t received the standard testing all my classmates had.
So I took the tests and they revealed I was highly gifted.
I looked around at the classmates and teachers who thought I was dumb, who’d underestimated me because I’m deaf. I finally felt recognized.
I moved to a new high school and fixed my hopes on the gifted class, excited to specialize in science and determined not to be left behind.
At my new school, I confidently raised my hand and asked classmates to stand up and talk facing me so I wouldn’t miss anything. People paid attention at first, but stopped before long. I couldn’t participate in discussions, couldn’t connect with anyone. It was like watching a TV show without audio or captioning.
Standing at my locker in the teeming hallway of my high school, my hands would shake so much I could barely turn the lock. People rushed by while I stood there, an island, isolated and alone. A classmate told me that the sound of my breathing was too loud, so I actually tried breathing less.
I began to feel like a ghost, floating between worlds, unable to truly participate in either. I was bored without my imaginary companions and the universe I’d built. I felt there was nothing to look forward to, no point to living, even.
I was untethered, breathless, adrift. That’s when I attempted suicide the first time.
Finding Sarah changed my life. I met her at a Deaf camp the following summer. I was shy and she noticed me struggling. Even as a teenager she carried herself like one of those perfectly dressed Italian women, bold and self-assured. Sarah patiently spelled things out, signing slowly, mouthing certain words. She told me about Sir James Whitney School for the Deaf in Belleville, Ont., where everyone communicates in American Sign Language (ASL). She said it felt like family there.
On my first day at the school, I watched the other students using only ASL — no mouthing or lipreading — and felt like I’d crash-landed on a surreal planet. People were curious, open and genuine. There was no fakeness. No guessing games. It was exhilarating, but also socially and emotionally exhausting. I’d retreat to my room after the school day and play saxophone or just lie in bed and stare at the ceiling.
One night, when our English class was publicly performing poems in ASL, one of my classmates blew my mind wide open. It was a simple poem, but he immediately drew us into the concept and mood. It was like watching a one-man film. Using his hands, face and body, he zoomed in and out, placing himself and the audience deep inside his composition, then shifting again in time and space.
I understood that night that I’d found my true language — a mode of communication that matched my brain’s wiring perfectly. As a result, I became more outgoing and could be myself with my classmates. I saw myself as part of a community and a culture — capital ‘D’ Deaf — rather than someone with a medical condition — small ‘d’ deaf.
Discovering this deep bond with other Deaf students was like falling into a familiar embrace.
It was the difference, for me, between life and death.
Buoyed, I experimented with not speaking aloud at all. I had to take some classes at a nearby mainstream school and presented myself as fully Deaf, rather than a deaf person who can lipread and speak well. Surprisingly, I felt more welcome than ever.
No one got angry if I didn’t turn when they yelled my name. Some students even tried to learn sign language. I felt respected. Outside of school, I began ordering coffee in ASL. Even when the barista didn’t understand everything I signed, the dynamic had changed.
I am Deaf. I communicate in ASL. It’s who I am. Why pretend otherwise?
After high school, I attended Gallaudet University in Washington, D.C., where everyone is Deaf. It was fun and distracting to have so many opportunities to connect with other people. That’s when I came to understand deafness not as a loss or an absence, but a gain.
Often when a person lacks one sense, it enhances their other traits. Empathy. Interpreting body language. For me, as a filmmaker, my deaf experience is at the root of my visual intelligence. My storytelling is rich with colour and motion. I even convey sound visually: the play of light and shadow or a reflection will indicate noise — footsteps or a ringing phone — just out of sight. I take this further when I make music videos, layering rhythms and tone with movement and visual pattern, signing, too. The sight of a bird’s wing flapping or a golf club swinging offer their own kind of poetic beat.
Seeing Deafness as a gift has shifted something inside me. It has opened up my world, transformed all that isolation and anxiety into a passion for sharing the insights of my Deafness and Deaf culture through storytelling and art. I want other people to experience the expressive potential of this beautiful language, this beautiful community. I want other people to see what I see. I want them to speak of “deaf gain” rather than “hearing loss.” I want them to stop seeing deafness as a medical condition that requires “fixing.” I want people to understand why I am happy to have a Deaf child, and why I consider our shared Deaf experience a privilege.
I worry, naturally, about the world my son will inherit. I worry that he will be prevented from enjoying his full rights as a Canadian citizen if he chooses to communicate mainly in sign language. I worry that our community is shrinking as a result of medical interventions that promise much and deliver little.
But right now, Titan is a normal kid growing up in Toronto. He loves trains. He loves to run. And he is Deaf. It’s part of his personality, his unique colour.
Recently at a party, Titan saw someone at the front of the hall signing to the group. He had something to add so he climbed right up beside the man and started signing himself. There’s no way I would have been able to do that at five years old.
My son has no fear. He feels accepted. This is my gift to him.
I WANT OTHER PEOPLE TO EXPERIENCE THE EXPRESSIVE POTENTIAL OF THIS BEAUTIFUL LANGUAGE, THIS BEAUTIFUL COMMUNITY. I WANT OTHER PEOPLE TO SEE WHAT I SEE.