Fiona’s story

The diagnosis

When I was six years old, I was very quiet and seemingly diligent student. However, nothing at school was sinking in. Because I was so well behaved, I could slide through the cracks.

It was only when I commenced year two that my teacher realised that most of my copy books were completely blank. It became apparent that I was completely illiterate. My teacher spoke to my mum and advised her that I get tested for a learning disorder.

I was referred to an early childhood testing centre and underwent so many tests. I can vividly remember taking the hearing test very seriously. My hands were sweaty as I pressed on the button and I listened to all the sounds. I thought it had been the easiest test that day!

That afternoon I was diagnosed as being profoundly deaf in my left ear.

After the diagnosis

There are no hearing aids powerful enough to produce any level of functional hearing in my left ear. At that stage they weren’t offering cochlear implants for unilateral hearing loss. The audiologist simply reassured my mum that because I could speak fluently, I would be “fine”.

Despite the audiologist’s reassurances, my mum recognised that I was still really struggling to learn how to read. I wasn’t offered any support in the classroom, so she stepped up to become my teacher at home. She juggled this while working full-time and was raising four kids.

Coincidently, my school had a special unit for children with disabilities. They provided lessons via Auslan. However, I wasn’t given the opportunity to go to that class as Auslan was treated as the “last resort”. At that time, this made me feel really proud. I thought being able to speak fluently made me superior to anyone who signed. I no longer believe this. I really wish that I had been given the opportunity to learn how to sign!

Learning to be deaf

When I eventually learned how to read and write, I became an absolute bookworm. It took years for me to realise that reading was the only activity that made me feel really comfortable. In fact, it’s only recently that I’ve realised how exhausted I am all the time. I simply assumed that everyone experienced daily headaches. I also assumed it was normal to come home from work,  collapse on the couch and not be able to watch TV or even talk to people. Because I didn’t know about listening fatigue, I spent most of my twenties trying to keep up with my friends. I worked long hours and socialised most nights. Every few months I would become absolutely bedridden with illness. I was literally burning myself out.

It’s only recently that I have begun to recognise how much deafness has formed my identity—from my personality to how I structure my day as well as how I engage and interact with people. Now that I understand how my deafness impacts my life, I can account for it in way that feels empowering. For example, I now plan for my days so I can avoid burning out.

I’m slowly becoming better at talking about being deaf and advocating for myself. Connecting with the deaf community has been really important. It is the only way I have learned how to survive in the world. Hearing loss is more than just the decibels going down in your ears. It’s a full body experience that affects every aspect of your life.

Deaf pride

Today, I feel really proud to be deaf. I think it adds so much richness to my life. Deaf people are brilliant listeners. We are constantly having to figure out how to access information that isn’t readily available to us.

I believe there needs to be a shift in how society talks about hearing loss. It is still considered to be the individual’s problem that needs to be fixed. Communication is a two-way street. Hearing people could learn a lot about how to listen from deaf people!