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.
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.
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.
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.
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:
Top Comments
I so badly wanted to hear stories like this where they didn't like their implant, I started to think I was the only one! I went deaf at the age of two because of combinations of medications I had to take when I was sick in the hospital. i got the implant when i was three maybe four. I don't remember the surgery or what happened when i wore it for the first time, but I remember taking it off as soon as I came home from school and refusing to wear the ci a few times at home or church. I started wearing it again because my family wouldn't stop telling me 'well maybe you'd understand me better if you would wear the CI!" They still say that, even while I'm wearing my implant! at first it was funny, but now it fells like they don't think I'm listening as hard as i can. Even if I wasn't wearing the implant, that dosen't mean they shouldn't involve me! i hated it because 1)everything sounded weird 2)it always fell of and i had the strongest magnet available 3) i felt like everyone thought i was faking how much i could hear (or not hear) with the implant. Mostly because i still couldn't hear as much as they thought i should have. i heard more but not enough to be considered hearing and it felt like a lot of pressure for me.
I don't know if I hate it enough that I'd give it up though, it has helped me and hearing people. I only wish I had been taught sign language. that would've helped me so much in school and busy places where my implant couldn't help me!
The only thing that made me confused in this post is the surgery part. I don't think they remove the cochlear during the surgery, they do have to do a lot in this surgery, but I don't think removing the cochlear is part of it.
Within the first three paragraphs there are already blatant factual errors. "The whole cochlear has to be removed." WHAT? The cochlea (that is the word, not cochlear) is not removed, in fact, it is NOT a discrete organ at all but channels through the temporal bone.
Did you ever consider the fact that she continued to have you rely on visual communication may have been the reason that you were unable to get a good deal of benefit from the implant? If a child is simply given an implant and not the follow up auditory training to build the pathways in the brain, the CI will not be successful. If your brain was not given the opportunity to code spoken language and sound without visual language, of course you will always prefer and use a signed language.
Obviously Gemma is not an audiologist -- So what if she mistakenly said they remove the cochlea. Her point remains: It destroys ALL natural hearing ability in the implanted ear(s).
Meaning, if at a later life the implantee were to wish to "revert" back to pre-operative state, that is impossible. Any residual natural hearing they may have had is no longer possible.
Why should a Deaf person have to be able to HEAR the English language?
I know Gemma - she can lipread, she can speak, and she can read and write. She put ALOT of effort into ALL of these areas as she grew up -- before I met her.
In other cases of Cochlear implants, I have friends who got them as a child - similar to Gemma - used them at school (with difficulty) and then proceeded to university, upon graduating they decided to no longer use the implant processor because of the other negative side-effects the concentration and emotional and social struggle that it caused. Again, they live a normal life with a normal job, integrated into both hearing and Deaf communities.
I do know others who chose as adults to get Cochlear Implants, and they love it. So much so that they got a second one too.
I am glad to not have a Deaf child, simply because as a hearing person it would be such a hard decision on what to do, because I am surrounded by people who do not use sign language, and thus would not be able/want to communicate with the child if they could not hear ("too much effort", etc")
Sign language isn't only for the Deaf. I am fully-hearing, but I prefer (linguistically) the Auslan language, for a variety of reasons including lateral thinking and auditory processing delays.
There will never be a simple answer for anyone in the position of the parent. But Gemma is at least trying to get the other side of the story that isn't so glamorous into awareness, so that parents CAN make a fully INFORMED educated decision. I know people who were never even told by the doctors that there was a community and language for the Deaf - I think that is sad, hiding the other side.