A Few Things I Learned From My Hearing Loss
On being a foreigner in the land of the hearing-abled
As a young child, I was bullied in school for reasons I couldn’t understand. Other people were a mystery to me. I even suspected they were robots, while I was the only real boy alive. I eventually snapped out of that delusion, but the mystery remained. I didn’t get why people said the things they said. And I couldn’t fathom why entire classrooms of boys would pick on me. I came to think of these boys as large bodies of water, chaotic and ungovernable.
One day, when I was four, I decided to take back control and exact my revenge. The most chaotic and ungovernable of my bullies walked into the classroom carrying a tower of books. He was trying to help our teacher, but I had a different idea in mind. I tripped him up, and he fell on his face. The books sprawled on the green linoleum. It was hilarious and empowering, at least for a few seconds…
My epic book-sprawling revenge did not include a getaway plan. I just stood there, grinning and exposed to retaliation. The bully — dazed but certainly not incapacitated — simply got up and ran at me. He shoved me into a wall, and my head banged on the plaster. I heard a ring, and it wasn’t the school bell. Then the ring subsided, but so did many other sounds.
Since then, I have worn hearing aids. They’re as mundane a feature of my life as t-shirts and socks. For years, the official diagnosis from dozens of otorhinolaryngologists — or, you know, throat, nose, and ear doctors — was that, at the time of my fateful meeting with the plaster wall, I was incubating a case of chickenpox. The vaccine for it was still relatively new, and I hadn’t received my shot yet. After the episode with the bully, the virus flared up, and I was bedridden for weeks.
Decades later, in my 20s, another doctor came to me with a completely new diagnosis: Enlarged Vestibular Aqueducts (EVA). According to the Vestibular Disorder Association, it’s a “condition caused by a malformation in the inner ear that leads to loss of hearing and vestibular function.”
This condition doesn’t come with any symptoms — beyond hearing loss, of course. You typically don’t find out you have it until it’s too late. That is, until head trauma or a sudden change in air pressure deposits you in a more silent world.
With hearing aids, I have been able to insinuate myself into the society of people with normal hearing. Yet to this day, I feel like a spy infiltrating a country that isn’t my own. Being hard of hearing is like being a foreigner in the land of the hearing-abled.
In my case, I was also a conventional foreigner, in the international sense: I was born in Spain and raised in Argentina, but I moved to California when I was nine. As an adult, I returned to Argentina — but I wasn’t a local there anymore. I was now American to Argentines and Argentine (or from some vague Somewhere That is Not Here) to Americans.
From this confusion of sensorial and national boundaries, I’ve tried to make do. These are some of the lessons I’ve picked up along the way.
Letting people know of my disability
As part of my infiltration of hearing-abled society, I let my hair grow long to cover my ears and downplayed my disability. The ruse worked: people (at school, at work) could go for months or years without suspecting I wore hearing aids. Many never found out. (Especially as I grew older and savvier.)
My reasons for this subterfuge were complex. Shame or embarrassment certainly played a part. There’s a stigma attached to the hard of hearing. In media and popular culture, they’re often comic relief and represented as dumb or distracted. Interacting with them is perceived as a hassle. You might as well save yourself the trouble and speak to someone else.
Eventually, however, this spy game became exhausting — and it began to affect my mental health. Because hearing loss is tiring enough without also trying to pretend you don’t have it. That’s double the work! And there’s already enough work to begin with.
You see, being hard of hearing is a full-time job, and it requires a considerable expense of energy. To illustrate, let me walk you through a regular interaction as I might experience it.
Meet Sarah, my hypothetical interlocutor. Sarah is sitting next to me at the lunch table in our fancy, glass-encased, open-layout office. We’re both finished with our frankly disappointing salads, so she quietly decides to get dessert for the both of us. Without warning, she informs me she’s headed down to the market and asks me if I want chocolate-chip cookies.
She’s walking away as she’s asking this, so I don’t have a tremendous amount of time to come up with a response. And since I’m hard of hearing, I didn’t catch everything she said.
For instance, was that “cookies” or “cooking”? We do have plenty of projects in the metaphorical oven. Or was she referring to the literal cooking of food? Because I’m not in the mood for that. I have to get back to my desk in a few minutes. And besides, the office microwave has been out of order for the past five years, and Human Resources simply doesn’t care at this point. You mark that down, Sarah. Though I’m not sure if she said “mark it” or “market.” And was she asking me to “chip in”? God, is there another colleague’s birthday pool I have to contribute to? I’ll go broke before the end of the month at this rate.
By now, Sarah is definitely close to the door, and I’m still juggling the possibilities. In a moment of enlightenment, I recall an earlier conversation we had about our cookie preferences, in which she voted for oatmeal, and I insisted on chocolate chips. So I lean forward and shout out a resolute, confident, “Yes!”
This is the intellectual strain I endure just for dessert. Imagine job interviews and conference calls. Imagine heartfelt talks with friends and family. Imagine dates, hoping to make yourself attractive to some random person you met yesterday on an app. When you’re hard of hearing, every conversation is suspenseful. Will you misunderstand a word? Will you respond to a question that was never asked? Will you botch the interaction?
When I mention all this to hearing-abled people, they’re quick to venture that I should ask others to repeat themselves. And I do, often. But here’s the practical problem: when you’re hard of hearing, you don’t miss the occasional word — you miss several words in every single phrase. Either you engage in mental gymnastics to fill in the blanks, or the conversation will never get going.
Before proceeding with even the simplest chat, I mentally draw what I like to call a semantic circle: out of all the words I know, upon the vast panorama of potential vocabulary scattered on an imaginary board, what terms or phrases is this person, in this context, most likely to use? This means I don’t have to hear an entire word — syllable by syllable, consonant by vowel — in order to pick up on it.
So, in summary: yes, hearing loss is tiring. And pretending I didn’t have it wasn’t doing me any favors. Because it meant no one understood my exhaustion, my misunderstandings, and my distractions. Instead of tracing these back to my disability, they assumed the worst: that I was aloof, uninterested, distant. And I gained little human connection out of the whole endeavor.
So I began to say outright: I’m hard of hearing. Speak up — you’re talking too softly. Can you please type that down? Sorry, that word escapes me. Come closer and say it to my right ear — it’s the better one.
Alas, before I could embrace this degree of transparency and straightforwardness, I had to shift my mindset.
Being tougher on others than on myself
Part of the shame that comes with being disabled arises from the absolute, profound conviction that you’re a potential nuisance to everyone else. “I’m sorry” turns into a personal mantra worthy of being tattooed somewhere on your body for reference purposes.
Under this view, you’re the one who has to make all the effort for the convenience of others.
I remember an interesting chat I once had with a fellow, hearing-impaired friend. We were trading anecdotes — much like the one above with Sarah — and sharing coping techniques and strategies. To sharpen my ear and comprehension skills, he advised me to listen to music videos and concentrate on the singers’ words. The noisier the song, the better for this exercise.
He then asked me, point-blank, “Do you read lips?” Well, no. I don’t. “You should learn how to read lips!” I felt like enacting my best Sean Bean impression and replying, “One does not simply… learn how to read lips.”
At no point did it occur to either of us that, perhaps, saddling ourselves with a long and challenging to-do list was not the only solution to our hearing-related woes. Perhaps we should task everyone else with meeting us halfway.
It’s fine to accept your disability and concoct workarounds so you can stop moping and start living. But that can-do spirit veers quickly into the toxic. You end up expecting too much of yourself and setting unrealistic goals.
After all, you only have so much energy to give. If every interaction requires you to be Gene Hackman’s character in The Conversation — furrowing your brow and deciphering fugitive voices in life’s wall-of-sound — then you’ll rapidly burn out. You need to manage your energy and ask for help when you need it.
Even if this risks being annoying. And that’s the hardest lesson of all.
Making the world fit your needs
Growing up, “ableism” and “accessibility” weren’t mainstream topics. (And I didn’t grow up that long ago: I’m in my early thirties.)
So the message I received — from my parents, acquaintances, and girlfriends — was that the world was hearing-abled, and I had to adapt to it. I was at fault for not adjusting to everyone else’s volume level. Of course, no one quite phrased it this way, because that would’ve been impolite. But the theme was clear, and I internalized it.
Only recently have I begun to consider how I might do things differently. How the world can, in small ways, adapt to me. And what I can do to make that happen.
In meetings at work, I now communicate my preferred seating arrangement. Whoever’s going to be presenting should be on my right side and as close to me as possible. If the conference call is distorted by electronic fizz, I raise my hand and let everyone know I’m not catching a thing. If I don’t understand an important word, I ask for it to be repeated. And if that’s not enough, I request that someone send it to me via text message.
I do likewise in more informal contexts. If my friends and I are headed to a noisy bar, I advise against it. Or at least I recommend sitting near the back.
I also defend myself against ableism. A few years ago, a friend laughed at me because, being hearing-impaired, I naturally speak “a little weird.” I smiled then. Today, I would have a few words with her.
These are tiny life-hacks. If my hearing loss were deeper, I would push harder for assistive technology like FM or soundfield systems in the workplace. The spectrum of hearing loss is wide. Some have cochlear implants. (I don’t.) Others are entirely deaf and communicate through sign language. (Not my case, either.)
But whatever your hearing loss situation, my lesson remains: ask more of other people. And accept that you’ll potentially be a nuisance to someone, somewhere, at some point. It shouldn’t matter, because you have a life to live. And let’s face it: you’re still going to be doing most of the work in every conversation. It’s just that changing your environment — rather than simply reacting to it — needs to be part of that work.
The hill is vertical enough. Try flattening it before you splurge on climbing equipment. It sounds hard, and it is — but at least you won’t fall later.
Do you have a story about a health condition or medical procedure? One of those you tell people at parties, and everyone bursts out laughing at your misfortune? Or maybe one of those you’ve never shared with fear of being a downer? We would love to hear it! Contribute to Innards, and join the team.
