Margot’s story

I was six when my hearing loss was finally discovered. My mum was advised by an ENT specialist that my sensorineural deafness could not be helped with hearing aids. I simply had to learn to live with not hearing well. This news didn’t overly concern my mum, though, as my dad was also deaf; he had mastered the art of masking his deafness and getting by. My mum and dad both lived through the war; they were, by necessity, of the “stiff upper lip generation”, where you just got on with it and made the best of your lot in life. And, naturally, I was expected to as well.

For years I tried to hide my deafness. I was self-conscious. Embarrassed even, especially as I always had to sit at the front of the class in school when what I really wanted was to sit at the back with all the cool kids.

I left school at 16 and worked in a variety of office jobs, where it was possible to mostly “get by”. However, by my mid-twenties, my deteriorating hearing was impacting my ability to carry out tasks such as minute taking.

At 25, I took the initiative to finally see an audiologist and, to my surprise, was advised that hearing aids would, in fact, help me. But the cost was out of my reach; I couldn’t afford them on my wages. However, the audiologist was sympathetic to my situation and very kindly set up an unofficial payment plan. Due to that initial act of kindness when I first obtained hearing aids, I have remained loyal to my original hearing care providers.

While those first hearing aids improved my life, their limited lifespan (3 to 5 years) heralded a new cycle of financial debt: I needed hearing aids in order to work and had to work in order to afford hearing aids. The cost of hearing aids continues to be a barrier to a whole cohort of people within the 26 to 64 age range who, by a stroke of genetic bad luck, illness, or mishap, are deaf or hard of hearing. Hearing and communication should be a basic human right; one that everyone should have access to regardless of their ability to pay. We shouldn’t have to rely on the kindness of an understanding audiologist who bends the rules, or on securing bank loans.

There’s a constant undertow of anxiety when you live with hearing loss. Every day is a challenge. It affects your confidence, self-esteem, and mental wellbeing. You often have feelings of inadequacy. You feel stupid when you mis-hear or, worse, don’t hear at all.

Last year I started a University degree. After only three weeks at Uni, COVID hit and all lectures and tutorials were moved online. I soon discovered that in an online learning environment I was on equal footing with everyone else; without the struggle to hear in a face-to-face physical environment, I was confident and could fully engage in all lessons.

This year, half of my Uni subjects are face-to-face. After my first workshop, I left Uni with a humungous headache from concentration fatigue. My confidence took a nose-dive and by the time I got home, I was in a dark place, angry and sad and considering dropping out of Uni.

Like many people with disabilities, I’m used to “getting by”. The deaf have to accommodate the hearing. I find myself saying “sorry” every single time I need someone to repeat themselves. I’m so tired of apologising for being deaf.

Deafness is often described as an invisible disability. Despite all my lecturers receiving a copy of my disability access plan, they still didn’t see me as “disabled” and therefore made no efforts to accommodate me.  

After that first workshop, my husband, however, picked me up, dusted me off and persuaded me to contact my lecturers . . . and they were fabulous! They apologised to me and are now actively trying to be mindful of my needs.

Being deaf can be lonely, especially when, like me, you occupy that grey-space between the hearing and the profoundly deaf. I’m not entirely part of either community.

I’m also of the strong opinion that we are failing our senior citizens with age related deafness. After a life of hearing, they’re now confronted with not hearing well. Adapting to wearing hearing aids is tiring and tricky; some senior citizens are tech averse or are unaware of the limitations of hearing aids (which will never replace “normal” hearing) or they have arthritic hands and struggle to manipulate small hearing devices and even smaller batteries. This is an  issue that will only get bigger as we improve our lifespan.

It’s my view that we shouldn’t just accept hearing loss as a natural part of aging. I see our elderly constantly being overlooked and left out in a social context because they can’t hear properly. Once a senior citizen is fitted with a hearing aid, that should be the beginning of their new hearing journey and not the end. We need to have a proper aftercare program such as regular home visits to ensure our senior citizens are correctly using their hearing aids and demonstrate how to, for example, utilise captioning on the telly.

The deaf have as much to offer as anyone, but until technology catches up and society “sees us”, then we will remain “unseen”.

And yet, I still hold on to the hope that I might one day sit at the back with the cool kids.