Ala’s story

My name is Ala. I’m 38 years old and am based in Sydney. I’m a freelance writer and also an English language teacher and a visual artist. I have moderate to severe sensory neural hearing loss in both ears and I need a hearing aid. I should be wearing it more often but I wear it mostly in crowded places.

I grew up in the Philippines and hearing loss actually runs in my family on my mother’s side but I did not know this because it was never spoken of. It was never spoken of even when three of my uncles wore hearing aids. As far as I knew there was only one deaf person in my family: my uncle Jiggs – my mom’s eldest brother. He was born profoundly deaf due to complications with hydrocephaly as a baby and the way I see it, because uncle Jiggs was profoundly deaf, I feel like my grandparents had such a hard time dealing with having a deaf son that they didn’t really bother with the other kids who had hearing loss, so for those uncles of mine, those three uncles with hearing loss, growing up with a deaf brother, their hearing losss must have seemed like a trifle in the family. It was not made out to be a big deal.

I was never screened for hearing loss. Nobody looked out for the signs and so I was absolutely shocked when I was diagnosed with hearing loss at the age of 19 and even more shocked to hear that it was genetic – that it ran in the family. But at the same time it made perfect sense. All my friends knew me to be like a space cadet, you know? Always floating around in space. A friend once commented that I was a conversation starter, not an ender. I could begin conversations but I would trail off. My concentration was very poor.

I always knew that something was not right. I couldn’t concentrate in class. Whenever the teacher would call me to answer I’d be like “what?”. I never knew what was going on, but I would score highly in my tests because when I studied on my own I did fine.

Even after I was diagnosed with it, my hearing loss still wasn’t discussed in my family. It’s not like everyone banded together to support me or anything. That didn’t happen and so, I ignored the problem. I didn’t really consider it a significant problem then. And it didn’t really fit in with my personal narrative at that time. This was 20 years ago, mind you, and back then in the Philippines I was a model and I was a TV presenter so, you know, a very glamorous career, and being hard of hearing did not fit in with that.

People with hearing loss are exceptional at pretending that they know what’s going on. We know all the social cues. You know when to laugh, when to nod when we’re having conversations with people, even though we don’t really know what’s happening 100%.

When I moved to Australia I worked in hospitality. I sang in a band. I was really good at faking it until my late 20s when my hearing began to deteriorate even more and I really began to feel the way it limited my life and it really hurt me whenever people would dismiss me in a conversation. That thing when you ask people to repeat themselves and they say “nah, never mind”, you know? Like, they get tired of talking to you.

It would hurt when they would laugh at me when I didn’t hear the right thing. Like, I knew I wasn’t stupid, but I worried that people would think that I was. Also, people thought it was acceptable to make fun of it and because of that I felt pressured to appear normal even though I knew I wasn’t normal and I began to feel really insecure about my future job prospects.

I knew I couldn’t work in hospitality for much longer and I lost belief in myself and even then, I didn’t really think the hearing loss was responsible for it. Somehow I just thought I was defective somehow. Something was wrong with me.

I was very depressed towards my late 20s. I eventually caved in and got hearing aids. And they did help but I was still very insecure knowing that I had hearing loss. I was terrified that I might forget to take the hearing aids to work with me. I would have panic attacks thinking about going to work without the hearing aids.

I was an English teacher already by then. One day, I was at work in the staff room with all the other teachers and I asked my boss to please repeat something that he just said because I didn’t catch it and he started going “huh?”. He was making fun of me. He was pretending to be hard of hearing. Usually I let it slide, but that time I think I began to to get a bit upset and people could see it. My co-worker noticed this and she stood up, she cut in, and she went straight to my boss and she said “that wasn’t very nice” and everyone in the room fell silent. My boss went red and he walked out of the room and I was just like “wow, somebody stood up for me”. I didn’t think that my disability mattered enough for anyone to stand up for me. It was a really big moment.

My boss apologized to me very sincerely after. I think it was a big realization for him. I think that a lot of people think it’s funny to make fun of people who can’t hear properly and I think a lot of people feel that way because the disability has never really been humanized. It’s always the subject of jokes. It’s associated with growing old and it’s not taken seriously.

So I decided to write about it. To give it a human voice. I eventually wrote an article for SBS and ABC. When I published those articles about living with hearing loss, I discovered that it was more common than I thought. I was not alone.

I found a community and it’s really affirming to hear that they have the same fears and anxieties that I do. The fear of your hearing aid breaking at the crucial moment. The fear of not being able to get work. And I also learned that even mild hearing loss has really significant effects, like it’s linked to memory loss, low self-esteem, anxiety, higher rates of unemployment, and a higher risk of dementia in old age.

At the heart of it, hearing loss is a communication problem. A great thinker named Marshall McLuhan once said “the quality of your communication is the quality of your life” and these are words that I take to heart to remind myself why I mustn’t let my hearing loss prevent me from living.

I decided that it was up to me to reach out to people and teach them how to communicate with me because they didn’t know how. To do this I would have to openly identify as a person with hearing loss and really make it visible by talking about it and writing about it. This took an enormous leap of courage.

It still feels very vulnerable to let people know about it but it’s either I do it, I come out with it, or I fade away if I stop. So far it’s really paid off.

I’m surprised at how accepting and considerate people can be when I make myself vulnerable and tell them about it. It also really helped my family realize that we are, in fact, a hearing loss family, which explains a lot of the way we behave and miscommunicate. In fact, my mum eventually went in for a hearing test and discovered that her hearing was even worse than mine and just today she told me that my grandfather and his sisters all had hearing loss as well. Go figure!

If my children end up having it, I want to prepare them. I want them to have more knowledge and information. More support than I did. And to not let it stop them from being whatever they want to be. So I hope they carry it with more confidence from the very beginning than I did.