Societal misperceptions about hearing loss can prevent people from seeking the help that they need. And even when we do look for help, our doctors may minimize the condition, sidelining it as a normal part of aging. The same goes for policy makers who have historically left hearing care out of many public insurance plans. This year’s World Hearing Day is all about changing mindsets about hearing loss in hopes of making “ear and hearing care a reality for all!”
Hearing loss has often been referred to as an “invisible disability”, not just because of the lack of visible symptoms, but because it has long been stigmatized in communities and ignored by policy-makers.
Tedros Adhanom Ghebreyesus, WHO Director-General
My Take on Changing Mindsets
My father had hearing loss but never discussed it. His mother had hearing loss but pretended she did not. I spent five years in denial about my hearing loss, and then another 15 years hiding it. Why?
Two reasons: Stigma and a lack of urgency from my health care providers.
I was recently asked to share my hearing loss journey at the World Hearing Forum Stakeholder’s Meeting to kickoff the group’s discussion of mindset change. In honor of World Hearing Day 2024, I share these remarks below. I hope they will jumpstart your own conversations about hearing loss stigma and encourage you to help advocate for better hearing care for all.
My hearing loss stigma started at home
I first noticed my hearing loss in my mid-20s in graduate school, but my hearing loss journey began well before, as a child watching my father struggle with his own hearing issues. He was highly stigmatized by his hearing loss and would do almost anything to hide it.
He wore hearing aids, but they were never seen—always hidden by sideburns grown long for that purpose. I remember social gatherings where he would disappear only to be found sitting at a table in the corner by himself. As a child, I didn’t understand why, but when I developed my own hearing loss, I knew. He probably couldn’t hear well in the loud party space and was embarrassed and exhausted and just couldn’t bring himself to keep trying.
My father never asked anyone to speak louder or to face him when they spoke or tried to position himself within the family group so that he could hear better. He never asked for a quiet table at a restaurant or did anything to draw attention to his hearing loss. In fact, he would often fake it, pretending to hear what others said rather than admit that he couldn’t. His greatest fear was that his secret would be discovered and because of this fear he eventually isolated himself from everyone and everything he held dear.
Not surprisingly, when I first started having trouble hearing in class in graduate school, I was terrified. Would I soon be the person in the corner at parties sitting all alone?
Providers ignored my hearing loss, so I did too
Despite my fear, I went to get my hearing tested. I don’t remember much about that first appointment, other than the result—mild hearing loss. I was told it was too slight to treat and even though I was missing things in class, was sent away without help. The provider didn’t even suggest that a different seat in the classroom might be helpful.
Thinking back on it, I don’t feel like they took my hearing difficulties seriously. They certainly didn’t offer any solutions but told me to return when things got worse. It was the perfect excuse to ignore my hearing loss for several more years. Which I did.
My hearing worsened and years later, I purchased my first pair of hearing aids. But I often refused to wear them, afraid someone might see. I was embarrassed and ashamed. I wasn’t sure why. Was it a learned response from watching my father, or was it something larger—the societal stigma associated with hearing loss that I wanted to avoid? In any event, my mother’s reaction was not encouraging. “Do you really need to wear them?” she asked me. Families can be stigmatized by hearing loss too.
Eventually, the answer became yes, I really did need to wear them. Still, I avoided them as much as possible. I remember sneaking them in before important meetings at work, wearing them hidden behind my long hair, and whipping them out as soon as the meeting was over. I got pretty good at it but I always worried that a telltale whistle might one day give me away.
Having children helped change my mindset
But then I had children of my own and everything changed. Since my hearing loss is genetic, I worried that I might have passed it on to them. I saw them watching me doing the same things I had watched my father do—hiding my hearing loss and laughing at jokes I hadn’t heard. I realized I was passing on the stigma to another generation. To break the cycle, I needed to accept my hearing loss. So, finally, I did.
I started wearing my hearing aids all the time and working to educate my family and friends about how they could help me hear them better. They helped me request quieter tables at restaurants and to use captioning devices at the movies. I refuse to let my hearing loss isolate me. It is hard work, but it is worth it.
Advocacy helps me pay it forward
Soon, I turned to advocacy. I started this blog to share my daily ups and downs with hearing loss and the tricks I use to live well with it. Later I joined Hearing Loss Association of America, where I am now on the national board. For the first time, I met other people with hearing loss and began to feel less alone in my struggles.
I began speaking at audiology conferences and aging conferences to share the person with hearing loss’ perspective. I want the broader health care community to understand the ways that hearing loss can impact all aspects of life. The way it can separate you from the people and activities that you love. But also, the ways it can be treated to enhance life and personal connections. My hope is that one day, the medical community will take hearing loss as seriously as they do other sensory disorders.
During the pandemic, my advocacy expanded to include the hearing loss documentary We Hear You. And I wrote the book Hear & Beyond: Live Skillfully with Hearing Loss with fellow advocate Gael Hannan. Through my advocacy, I hope that I can help others to live more comfortably with their own hearing issues too.
Help Support World Hearing Day
World Hearing Day is held on March 3rd each year to help raise awareness on how to prevent deafness and hearing loss and to promote ear and hearing care across the world. This year’s theme is changing mindsets about hearing loss. Please join in!
With your help, I remain hopeful that one day, we will all live in a world free from hearing loss stigma. And one where access to quality hearing health care is available for all.
Readers, will you help celebrate World Hearing Day?
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