lifestyle

"I'm deaf, I'm happy, and I don't need to be 'fixed'."

Gemma and Amanda on their wedding day last year.

By GEMMA GALEA

When I was around 11 months old, my mother crept close to my cradle whilst I was sleeping and shouted. I did not move.

She shouted again, closer. I slumbered on, blissfully unaware.

My mother had just discovered I was profoundly deaf.

At the age of three, I was enrolled in Farrar School for the Deaf. I was taught using a method called Signed English. It is not a language but instead, an attempt to teach English through signs, with English grammatical structure.

After two years of consideration and testing, it was decided I was a good candidate for cochlear implant surgery. It wasn’t without risk; to have the implant means the entire cochlear must be removed, so any residual hearing is destroyed. There are also possible outcomes like facial paralysis, nerve damage and infection.

I remember being wheeled down the corridor in a hospital bed, age five, completely oblivious as to what was going to happen. Suddenly a doctor in scrubs appeared, removed his frightening-looking mask and began mouthing words at me that I could not hear.

My mother was there and they were both smiling at me. I felt an immediate panic rise in my chest and I began screaming wildly and fighting.

Gemma at age five, after cochlear implant surgery.

I remember the needle in my arm almost coming out as the nurses and my mother struggled to hold me down. It took three of them to hold me down as they struggled to inject the anaesthesia.

I guess this characterises my entire relationship with the cochlear implant, and the whole notion of “fixing” my deafness: “Not happy, Jan.”

When my implant was turned on two weeks later, that supposedly momentous moment was filmed. My experience wasn’t like a lot of the viral YouTube videos you see of kids hearing for the first time: Instead, the video shows me clearly distressed at hearing my first sounds, jumping onto my mother immediately and shaking my head forcefully “NO” every time I was asked if I liked it.

Not really the stuff of 60 Minutes.

My mother was advised by the medical profession to stop signing with me. She didn’t agree with this advice and continued to sign with me.

But my school began the eternally annoying practice of speaking at me – with their hands over their mouths. I barely heard them. Day in, day out, I was forced to train like this for an hour at a time, at the expense of my education – ssshhh, ch, p, mmmm, ahhh. Noises that meant nothing to me but earnt me a meaningless star on the chart.

I was tossed from school to school, six times over my life, as people struggled to categorise me. Was I deaf? Hearing impaired? Hearing? It was an exhausting, confusing, and disheartening process.

Then at 14 I was given my first Auslan interpreter. I didn’t know Auslan yet — but suddenly the world came alive. Things began to make sense.

ADVERTISEMENT

Soon after, I went to the only school in NSW where all classes were delivered in Auslan. By Year 10, I was school captain. I began to find my true Deaf identity: Deaf with a capital D, culturally and linguistically Deaf.

Gemma today.

The cochlear implant was a constant source of annoyance for me and became a struggle between my mother and I. I began to assert my Deaf identity in my mid-teens when I saw other happily Deaf kids around me. I liked who I was. I didn’t need to hear. But my mother insisted, and so the tug-of-war continued.

Looking back, I appreciate what she was trying to do: she wanted me to have the best of both worlds. But I already felt I had that – and more to the point, the cochlear implant was impeding my access to the hearing world.

I already knew I lipread better when I turned my processor off – the noises people’s speech made never seemed to match what their lips were saying. Trying to understand what was going on in a crowded room, or at a family function, or with background noise, was impossible. Sometimes, I would quietly turn my processor off for some peace and quiet.

By 21 I had made the decision: I took the processor off for the last time.

I am now 27, happily married, and a teacher of both hearing and deaf students.

My wife Amanda is hearing, but an Auslan interpreter, so Auslan is the language we use at home.

Amanda and Gemma’s wedding waltz, which they performed in Auslan to each other (post continues after video):

I find the media and medical profession’s view of the cochlear implant incredibly biased. The cochlear implant will never cure deafness.

I believe all children should be taught sign language as a human right. It is their first possible access to language, and in some countries it is a legal requirement.

Gemma signing with some deaf friends.

I support anyone who wants to get a cochlear implant and has made that as an informed decision. What I hate seeing is parents, confused, vulnerable and in need of support, being shoved down the medical intervention path.

They are rarely told about the other side, nor given information and access to Deaf mentors and people like myself who have a very positive experience of being Deaf.

If there were a magic pill that could make me hearing, I wouldn’t take it. I love being Deaf: the language, the culture and the rich history are so unique and I wouldn’t change it for the world.

I don’t need to be fixed. Put THAT on camera.

A video “marry-oke” from Gemma and Amanda’s wedding day, produced by Amanda’s brother:

00:00 / ???