Be Heard: The Voice of a Hard of Hearing Person

On accepting and honouring my not-so-perfect hearing

Photo by Jessica Flavia on Unsplash

“It is not easy being deaf. It never has been. Our lives are shorter. We experience mental ill-health at far greater rates than the general population. Our brains and bodies are continually stressed by the demands of having to live in a hearing world. Our access to language, education, healthcare and secure work continues to be curtailed both by legislation and by ignorance. We are simultaneously held to extraordinarily high and frustratingly low expectations. It is exhausting.”
~ Fiona Murphy, The Shape of Sound

Every year, the World Health Organisation (WHO) holds the World Hearing Day on 3 March to raise awareness and promote ear and hearing care. According to the WHO, over 80% of ear and hearing care needs remain unmet globally and that unaddressed hearing loss poses an annual cost of nearly USD $1 trillion. Societal misperceptions and stigmatisation often prevent people from seeking or receiving support for their hearing loss.

Despite being diagnosed with bilateral hearing loss almost four decades ago, I have only started to become curious about my own hearing loss in recent years.

I used to keep my hearing loss a secret because it was considered a taboo where I grew up. I was told that I could overcome it, as long as I did not see it as a problem.

I used to put in extra hours and effort after school and work to compensate for what I could not hear in classes or meetings. I believed I could live a “normal” life by working harder than able-bodied people. Intellectual knowledge is the armour that shields me from humiliating encounters (and also my own shame).

I used to (and still do) get nervous and apprehensive when meeting new people or talking on the phone after too many occasions of being laughed, frown or yelled at because I missed out on or misheard some details in conversations.

I used to habitually dissect every conversation I had with people, nitpick my communication skills, and ruminate about what I could have said or done differently. I self-taught myself to hear better using my eyes – by reading lips and monitoring facial expressions – to fill in the gaps and make educated guesses of what I could not hear.

I used to loathe myself for not enjoying television, radio, movies and social outings as much as my family and friends did. While I could hear sound, nothing made sense to me as if I was listening to foreign languages. I have often found myself feeling disoriented and isolated, like an outcast who belongs to nowhere and understands nothing.

I used to rely on a handful of people who knew about my condition to look out for me, but they could not be by my side all of the time. Over time, I worked the courage to ask people to face me and speak up clearly. However, people often reverted to their usual way of speaking after a few minutes – and I ended up having to voice my needs repeatedly. Each time was a blunt reminder that I had a “deficit” that needed “special treatments”.  Sometimes I chose not to disclose my hearing loss simply because I felt so burnt out from self-advocacy.

I used to wonder what it would be like to be fully deaf and living in the spaciousness of silence – something that I had never experienced – as my body tried to adjust and compensate my hearing loss with incessant tinnitus, like having an out of tune radio turned on all hours, which distorted my residual hearing even more.

Navigating life in a hearing-centric world as a hard of hearing person was lonely, anxiety-inducing, exhausting, and disheartening.

“Unless plotted out on the audiogram, my deafness was invisible.” ~ Fiona Murphy

Here is my audiogram from February 2022. It shows that I have bilateral sensorineural, reverse-slope hearing loss: mild for high-pitched sound (3k - 8k Hz) and moderate to moderately severe for low-pitched sound (250 - 3k Hz). This is one of the rarer forms of hearing loss and affects one in 12,000 people with hearing loss.

I bought my first pair of in-the-canal hearing aids when I turned 37 years old, as I started to join the dots between my unaddressed hearing loss and various health issues. Yet I continued to bury my head in the sand, hoping for some bliss in ignorance by resisting to delve into my hearing experience (and the deep wound associated with it) – until I read Fiona Murphy’s The Shape of Sound in April 2021.

For the first time in my life, I felt seen, understood, and validated.

The headache, gut issues and anxiety I had been experiencing was not because I was weak or unhealthy, but rather they were symptoms arisen from spending decades in hypervigilant state and chronic sensory overload, as I had to use every part of my body (sights, smell, taste and touch) to help me hear.

My avoidance of social outings and large parties was not because I was lazy or anti-social, but rather because it would take me about 24 to 48 hours to recover from the hangover of sensory overload and listening fatigue. I hated the fact that I missed out on a lot of fun and friendships because of this. I felt like I had no choice but sacrifice joy in order to manage my energy level and be functional in everyday life.

My inability to understand television shows, songs, movies and podcasts was not because I was stupid, but rather I had used up most of my cognitive energy to detect and decipher sounds, meaning there was often nothing left to retain, process, and interpret information, or shift quickly to follow the change of direction and flow in conversations. I would always breathe a sigh of relief when I had the option of subtitles, closed captions or transcripts – at least I had the opportunity to understand and engage with the content that everyone was talking about.

Hearing aids were not a magic fix. Wearing them was just as exhausting (if not more) as living with hearing loss. Sudden exposure to every sound (and noise) at the “normal” volume was a shock to the physical body. I continued to struggle to hear while my body was working hard to adjust to the new normal and relearn how to perceive and process all these amplified, echoey sounds.

What struck me the most was the internal monologue around how I wanted to define and open up about my hearing loss with other people. Would I call myself Deaf, deaf, hearing impaired, hard of hearing, or disabled? None of these terms resonated. I could still hear without hearing aids, and I was still capable to do many things and contribute to the society. However, the extent of hearing loss was significant enough to affect my health and quality of life, but not severe enough to be qualified for any government disability support¹. I felt like I was stuck in this awkward space where I was neither abled nor disabled, as Murphy articulated so eloquently in her memoir:

“Could I even call myself deaf, given that I could hear? I felt as if I resided in a serrated in-between place: half-hearing and half-deaf. Instead of two halves making a whole, each half rubbed up against and eroded each other.”

“I began to feel jealous of people without any hearing at all. It seemed easier to be either one or the other, hearing or deaf. Did being half-deaf even count as disabled? Now that I had to think openly how I defined myself, I dreaded being laughed at or told to leave…Entering a place of truth meant exposing myself to a horrifying lack of certainty. It seemed safer to stay within the unshifting story that I was ‘normal’.”

1. My first pair of hearing aids cost more than AUD $10,000 in 2016. While I was fortunate enough to be able to afford them, I could not help but wonder how many people would leave their hearing loss unaddressed because their conditions were not severe enough to receive government disability support and they did not have the financial means to access the much-needed resources and support.

Photo by Annie Spratt on Unsplash

Four months ago, I changed to a pair of behind-the-ear hearing aids with Bluetooth technology.

Now I can take phone calls directly through my hearing aids, adjust the sound and volume settings for different situations on my phone, and also use a portable microphone to capture speech at large group meetings.

Hearing technology has certainly improved since I got my first pair of hearing aids seven years ago.  However, it still cannot replicate the sophistication of natural hearing. While I have some control of the hearing aid settings in real time, there are still many things that are beyond my control and can affect my hearing ability and experiences. For examples:

• Multiple people may speak on top of each other all at once.

• The conversation may shift from one side to the other across a large conference room within seconds.

• People may put their hands in front of their lips, or face the opposite direction from me, when they speak.

• The seating arrangements or dim lighting may prevent me from seeing people’s faces clearly.

• Music is being played in the background.

Sometimes the technology can be unreliable or inflexible, like the Bluetooth connectivity dropping out; the hearing aid app glitching; the microphone not picking up people’s voices beyond a certain distance or picking up too much background noises that mask the speaker’s voice. So often I get caught up in trying to fix the technological issues, move to a different position in the room if I can, or ask people to speak up subtly, that I end up missing out on most of the spoken words and feeling disappointed, embarrassed and even resentful at myself.

I have also noted an interesting observation since starting to share more about my hearing experience. Many people genuinely believe that I can hear like an able-bodied person with these new hearing aids. They look so surprised when they find out the technology is not as good as it is claimed to be, and that I still struggle with hearing, listening fatigue and tinnitus. I often feel challenged and exhausted by having to debunk the myths about the hearing technology and explain my hearing challenges and needs again and again.

Only recently I have come to realise that it is a privilege (and not a nuisance) to have the opportunity to live life as a hard of hearing person and be able to share my lived experiences. As crazy as it may sound, if I were given the power to change one thing about my life, I would not choose to fix my hearing loss. Because I cannot hear well, I have learned to:

• Pay attention and stay fully present in conversations.

• Listen deeply beyond the spoken words. Take note of what is not being said. Watch the body language and micro expression.

• Observe, smell, taste and feel the energy around me.

• Communicate in simple words, plainly and clearly.

• Never assume people understand what I say. Always check for understanding.

• Be kind, patient and considerate to others as we may not know their struggles.

• Respect and honour the limits of my physical, mental, and emotional body.

• Let go of the need to hear and know everything, trusting that whatever I can or cannot hear is meant to be.

• Practise radical acceptance for things that I cannot control.

• Be prepared and responsive to change, knowing that nothing is static.

• Embrace boundaries and constraints as they are the portal to creativity.

• Make bold choices that align with personal values, even when other people do not understand or agree.

• Ask for help. Suffering in silence is not helpful to anyone.

• Be vulnerable and open in sharing personal stories. Representation matters and we can bring upon systemic, inclusive changes that benefit all through collective awareness and actions.

My hearing loss is a gift in disguise, as in each loss there is always a gain. I may have been deprived of some parts of a “normal” human experience, and things can be difficult at times. My body carries many scars and wounds from trying to fit in and match the ableist standards. However, in return, I get to walk a path less travelled and discover the beauty, richness and organicity of our diverse human nature. This journey has stretched my mind and expanded my heart, bringing me home to the truth of my existence. For this, I am forever grateful.

“It’s said a writer lives twice: once in the moment, then once again in the retelling. Perhaps a deaf person lives many more times? First in the anticipation of a conversation, then physically alert, ready to latch onto each sentence, phrase, word – a short life in every syllable. Then reliving the aftershock of conversations, replaying them, wondering: did I hear that correctly?” ~ Fiona Murphy