What It’s Like Growing Up With Moderate to Severe Hearing Loss
Sorry, can you repeat that?
Three — that’s how many times you can ask someone, “What did you say?” before prompting nervous laughter, slight annoyance, or awkward silence. In my experience, anyway.
I’ve always felt a bit hesitant to talk about my hearing loss. For nearly as long as I can remember, I have worn hearing aids, from bulky behind-the-ear styles to more subtle in-the-canal types.
Hearing aids have been my lifeline to experiencing the world more vibrantly and I treasure them. But growing up, I didn’t want to be defined by them, or to be completely honest, what wearing them meant — that I had a disability.
I was about four or five when my family first suspected something was wrong with my hearing. I would consistently ignore people who spoke to me from a distance and slightly mispronounce words (both of which are only endearing when you’re under the age of 10 or over the age of 80).
Doctors determined that my bilateral hearing loss fell in the range of moderate to severe, determined by the inability to hear sounds lower than 55–70 decibels (dB). For reference, normal conversations are typically about 60 dB.
I was fitted out with two specially molded hearing aids that amplified my surroundings (and my self-consciousness). My parents assured me that I would not be limited by my hearing loss. I would be special for what I could do, not for what my ears couldn’t.
And so, as I started elementary school, I rapidly moved from special education to the general classroom to accelerated learning. I learned to lip-read and make educated guesses if I didn’t fully hear someone. I took piano lessons, where my teacher said I had a knack for playing by ear.
Through it all, I secretly tried avoiding wearing my hearing aids as much as possible. That all changed the day I threw them away.
Once I reached the third grade, I had gotten into the habit of taking off my hearing aids for lunch at school. (Why I thought this would be a cool thing to do, I’ll never know.) I’d hide them in the shadow of the mandatory milk and juice cartons on the tray. And sure enough, the time came when I forgot about them.
Panic sunk in when I realized they were missing. I ran back to the cafeteria and told the lunch monitors, who proceeded to roll out the trash bins and hand me a pair of gloves.
While I stood there feeling sorry for myself, the janitor came to my aid, helping me rummage through half-eaten cheese pizzas and dirty napkins. I’ll never forget his kind, crinkly-eyed smile as he handed me the hearing aids that I had been so careless with.
From that point forward (after cleaning them thoroughly), I made sure I wore them anytime I wasn’t sleeping or showering.
Or swimming, you might suggest. Well, that’s a story for another time.
As the years passed, my hearing loss eventually felt normal. Outside of the audiologist’s office, I rarely talked about it. Mostly, no one seemed to notice or they were too polite to bring it up.
Sure, occasionally, someone would look at my ears and ask what happened. I’d brush it off. It’s like wearing glasses, I’d say. My hearing loss didn’t faze me. Until it did.
Why did I feel so embarrassed when I heard my hearing aids’ high-pitched feedback as I hugged a friend? When I just couldn’t figure out what someone had whispered from a few inches away? When a colleague tried to match me up with his deaf nephew?
Most recently, I came across the Voluntary Self-Identification of Disability form when filling out a job application. My eyes jumped to the “Deaf or hard of hearing” item at the top of the second column. I deliberated over the checkboxes, wondering if my hearing loss “substantially limits a major life activity.”
The Equal Employment Opportunity Commission clarified it for me:
“If a mitigating measure eliminates or reduces the symptoms or impact of an impairment, that fact cannot be used in determining if a person meets the definition of disability. The determination of disability must focus on whether the individual would be substantially limited in performing a major life activity without the mitigating measure.”
Mitigating measures included hearing aids but not ordinary eyeglasses or contact lenses. After all, corrective lenses are intended to fully correct your eyesight. And while hearing aids can restore some sound and clarity, they cannot restore perfect hearing.
Looking at the other disabilities listed, I hovered between “No” and “I Don’t Wish to Answer.” Suddenly, I felt guilty. Here I was, debating a label on a confidential form that’s meant to promote equal opportunities.
Why did I feel ashamed to simply acknowledge, “Yes, I Have a Disability”?
Disability stigma runs deep. It’s one of the top reasons why, along with cost, some 28 million people with hearing loss in the U.S. don’t wear hearing aids, even though they would benefit from using them.
I had internalized ableism when I thought I was combatting it. I did my best to fit into the “hearing world” but often received reminders that I didn’t quite belong. On the other hand, I couldn’t identify with Deaf culture either; as a child, I didn’t personally know anyone who was Deaf and I barely learned any ASL.
Come to think of it, I don’t remember meeting many other people with hearing aids either. There were one or two kids in high school who had developmental disabilities in addition to their hearing loss, so they were always sequestered in their own classroom. Elsewhere, there were elderly people, most of whom loudly complained about their hearing aids to me.
Then, there were others, of varied ages, who were experiencing some degree of hearing loss but told me they still weren’t sure about wearing hearing aids. Back then, I didn’t know what to say.
These days? I’m happy to share my story. I want to help break down the stigmas around wearing hearing aids and show that anyone can be known for more than their disability. But I can also appreciate how hearing loss has played a role in shaping my personality, my worldview, perhaps my life’s trajectory.
Do you have any questions about living with hearing loss?