In October 2020 our very own, Katie Douglass, was chosen to be a Loud Shirt Day ambassador for the Hear and Say Centre. In this piece, she reflects on her own experience of growing up hearing impaired in Australia.
I can hear the crows cawing, but I can’t hear the high-pitched buzzing of mosquitoes. I can hear the front door opening, but I can’t hear the gate swinging. I can hear the chatter of people nearby, but I can’t hear the words. I live in between two worlds — sound and silence. I was born deaf, yet I can hear.
When I was a baby, I would peacefully sleep through the sounds of my cousins running around and shouting. While my mum credited it to her parenting skills, my aunt was suspicious. She conducted secret hearing tests, banging pots and pans behind my back to see if I would react. I hate to spoil the ending for you, but I did not hear a single thing.
After failing multiple hearing tests at the local clinic, I was diagnosed with a severe to profound hearing loss much to the shock of my family — a family of hearing people with not a single deaf relative.
My diagnosis was back in the mid-1990s when cochlear implants were a relatively new thing. At the time, the approval criteria to receive a cochlear implant didn’t extend to those with less than a profound level of hearing loss. So, I was fitted with hearing aids instead and began auditory-verbal therapy where I was taught to use the sound I had to listen and speak. But, I still wasn’t hearing well. I recall attending a playgroup and while every other kid was singing along to ‘Puff the Magic Dragon’, I was sitting in the corner, silent and unengaged.
Then, the criteria changed and a couple of months after my 4th birthday, I received my first cochlear implant and got to ‘hear’ for the first time.
What it’s really like to hear for the first time
While the viral videos of babies and kids hearing for the first time are adorable, they don’t really tell the whole story. The ‘switch on’ — where the cochlear implant is fitted and activated — is actually the easy part. It’s what happens next that is comparable to training like an Olympic athlete.
A hearing aid and cochlear implant are often confused for the same thing but a hearing aid just amplifies sound. Invented by Australian scientist, Professor Graeme Clarke, the cochlear implant actually bypasses the damaged part of the inner ear and delivers electrical impulses to the hearing nerve to essentially ‘recreate’ hearing. The cochlear implant has two main components — an external processor and an internal implant.
The best way to describe getting ‘switched on’ is a cacophony of disorientating sounds and sensations that you feel in every fibre of your being. Every second, my brain is forming the neural pathways to perceive and process every sound — sounds that hearing people can filter out without even thinking about it. It opened up a whole world that I hadn’t been a part of before. I was suddenly aware of sounds that were unfamiliar to me, including thunderstorms and the ticking of a car indicator.
Learning to hear and speak didn’t just happen overnight. My family and I spent hours and hours with auditory-verbal therapists and audiologists at the Hear and Say Centre, a world-leading Paediatric Auditory-Verbal and Cochlear Implant Centre, to develop my speech and listening skills. After I was ‘switched on’, I had to train my brain to understand each and every signal coming through and prescribe meaning to the sounds. I had to learn to distinguish between ling sounds, vowels, closed set and open set word lists.
When I’m hearing and talking to people today, it might seem effortless just like when an athlete looks effortless gliding along the lanes of a pool. But what’s invisible is the sheer concentration and hard work it requires to join in conversations and for my brain to fill in the gaps. Just imagine having a conversation with someone at a dinner party and you’re missing every fourth word. Your brain has to work to piece together the sentences. Add in a noisy background or multiple conversations and that puzzle just got a bit difficult.
Luckily, there have been advancements in hearing technology to make life a lot easier. When I got my cochlear implant at four years old, it was the size of a mini backpack. It involved wearing a harness to strap it on my back with a long wire leading up to behind my ears. Today, it’s a lightweight and small behind-the-ear accessory. It now comes with Bluetooth capability that streams phone calls, music, and podcasts from my iPhone. If you told me when I was a kid that I would be able to wear my cochlear implant in the ocean or pool, I would have laughed. Now, it’s a reality with the Cochlear Aqua+ — no more worrying about not hearing the shark alarm at the beach.
Growing up in two worlds
Despite being born deaf, I’ve been living in a world full of sound. Within months of receiving my first cochlear implant, I attended a mainstream school where I played percussion, netball, and attended drama classes. I went on to study at university, move to another city, and work in a full-time job. Everyday, I get to talk and laugh with my family and friends. I listen to podcasts and music on my way to work. I’ve lived a life as close to normal as possible, but growing up with bionic ears did come with its own unique challenges.
You know that pool game Marco Polo you played as a kid? Not exactly my idea of a fun time.
Closed captioning is also one of my biggest frustrations. If you ever want to have a good chuckle, turn on the TV news subtitles and you’ll find the most bizarre combination of words. Even better, turn on the descriptive captions — I’m talking ‘funky mystery music’ or ‘sobbing mathematically’.
My hearing loss could be described as an invisible disability (unless you can make out my cochlear implant underneath my thick hair). There have been times where I haven’t understood someone correctly or asked them to repeat themselves and I’ve been patronised or spoken down to. If I ask someone to repeat what they said, I might be brushed off and told ‘never mind’.
There are little things I have to be conscious of to help me move in this world better. For example, lighting makes a huge difference — if I can’t see, I can’t rely on lip-reading. If someone has their back towards me or is in another room, I might struggle to hear every single word. Recently, I was at a train station trying to get home and there were massive delays but I couldn’t hear the announcements telling me which platform to go to. There was no one around to help and I just had to hop on a random train and hope for the best.
However, being deaf also comes with its funny moments. Often, I hear a word or phrase so close to what was said but is absolutely wrong and makes no sense, much to the bemusement of my family and friends. One time, I was having a conversation with a friend in a noisy shopping centre and she was telling me about whether she should get eye cream and if she’s too young to start using it. I spent the better part of that conversation confused and wondering why on earth she’d be too young for ice cream.
I also enjoy that I can switch on and off from the world at will. When I turn off my cochlear implants, I can retreat into a world of peaceful silence and shut out sounds. I can take them off strategically, especially when I disagree with a friend’s choice of music or when I was being lectured to by my mum as a kid.
What most people take for granted is that our sense of hearing allows us to connect with the world and the people around us. The reality of being deaf in a hearing world was brought into a sharp focus when the COVID-19 pandemic hit and face masks in public spaces were either strongly recommended or mandatory. While my cochlear implants give me sound, I still rely on visual cues to help me understand what people are saying. Suddenly, my ability to lip read and, ultimately, my way of communicating, was taken away. I struggled to explain to shop assistants why I couldn’t understand what they were saying. I had to work up the courage to ask people to write down what they were saying. I ended up afraid I would miss vital information or do the wrong thing.
Am I deaf or hearing?
Whenever I have to fill out a form that has a self-disclosure box asking if I have a disability, I always hesitate. I battle an internal dialogue that switches from ‘I’m deaf, but I can hear and speak just like everyone else’ to ‘I can hear perfectly fine but I might struggle to hear certain things so they should know, right?’. When it was suggested that I apply for NDIS funding, I baulked at the suggestion despite needing thousands of dollars worth of equipment (batteries, replacement parts, visual fire alarms) to make life a little bit easier. This is the reality of being on a continuum where I question if I deserve space in the disability box.
It raises an interesting dilemma of what it means to be ‘disabled’ in today’s society.
What being deaf has taught me
I don’t feel like I’ve lost anything by being deaf. If anything, I have gained so much. I’ve gained an empathy for those who might be considered different in our society. I’ve gained an understanding of how well humans adapt and turn the impossible into possible. I’ve gained an appreciation for everyday sounds that other people take for granted.
David Owens, author of Volume Control: Hearing in a Deafening World, said it best:
Loud Shirt Day
And this is why I’m getting loud on Friday 23rd October. I’m taking part in Loud Shirt Day this year to give back to the Hear and Say Centre who gave me the life-changing gift of speech and sound. An annual fundraising appeal, Loud Shirt Day is about wearing your brightest and loudest clothes (no plain white tees need apply) to raise awareness and money for deaf children.
Want to get LOUD?
If you would like to learn more or donate to this amazing cause, click on the button below.Donate