“Look Mom! You are just like the queen!” my 14-year-old son texted me a few days ago, after seeing news coverage and a photo of the queen of England wearing a hearing aid. Apparently, this was the first time the 93-year-old monarch has been seen wearing a hearing aid in public. This is surprising given her age, but maybe not so surprising given the stigma that continues to surround hearing loss. Perhaps she thought a hearing aid would make her look dotty, undignified or even weak. I know these feelings firsthand.
My hearing loss began in my mid-20s, when I was in graduate school. Early in the semester I started missing things in class — comments that were made under one’s breath or as an aside. Other students were growing weary of my continually asking them to repeat the punch lines of classroom jokes. I knew what the problem was. I was losing my hearing, just like my father had done in his early adulthood. This adult-onset genetic hearing loss was now in its third generation in my family. I hoped I would not pass it on to my children.
My father was stigmatized by his hearing loss and would do anything to hide it, including wearing his sideburns long enough to hide his hearing aids well beyond the time this was fashionable. He never asked anyone to speak up, or to face him when they spoke so he could hear them better. He never asked for a quieter table at a restaurant or did anything else that would draw attention to his hearing loss. It was an unmentionable topic, and one that eventually drove a wedge between him and his family, his friends and almost everyone else. Was this to be my fate as well?
This adult-onset genetic hearing loss was now in its third generation in my family. I hoped I would not pass it on to my children.
Looking back on it, I see that my family was not supportive. My mother would often whisper secrets to my sister and me behind my father’s back, saying, “Don’t worry, he can’t hear us.” As a child, I knew this wasn’t nice, but I don’t think I fully understood the damage it was doing. It is likely that this behavior added to his feelings of shame and embarrassment. It makes me sad to think of it.
When I started having problems hearing, I hid it, following his example. For friends I could hear well, I was always available, but for the ones with quieter voices, I made excuses. The same thing happened at work. The quality of my client relationships depended more on the strength and tone of the client’s voice than on business-related factors. This was not sustainable. I knew it was time for a hearing aid.
But when I got my first pair of hearing aids, I hardly ever wore them, afraid someone might notice them. I was embarrassed and ashamed, bogged down with stigma and fear, much as my father had been. Was it a learned response from watching my father, or was it something larger — the societal stigma that’s still associated with hearing loss? In any event, my mother’s reaction was not encouraging. “Do you really need to wear them?” she asked me. Unfortunately, the answer was yes. While my hearing loss was still deemed “mild,” I was unable to follow a group conversation well or hear people whose voices were in my hardest-hit frequencies unless I wore my hearing aids.
When I got my first pair of hearing aids, I hardly ever wore them, afraid someone might notice them. I was embarrassed and ashamed, bogged down with stigma and fear.
My battle with my hearing loss continued, but life went on. My hearing loss progressed to “moderate,” meaning I needed to wear my hearing aids in all situations to communicate well. Even so, I hated them, and only wore them some of the time. I would sneak them in before important meetings at work, and eagerly rip them from my ears first thing upon leaving the office. I never wore them socially unless I really needed them.
But when I had children, everything changed. I saw them watching me, just like I had observed my father faking his way through conversations and laughing at jokes he had not heard. I was traveling down a path from which there was no return. I knew I needed to break the cycle and provide a better example for my children. I needed to become the role model I had never found for myself. So I did. It had taken me almost 15 years after my hearing loss began.
I began wearing my hearing aids all the time, volunteering at hearing loss-related charities, talking about my hearing loss to anyone who would listen and advocating as a board member of the Hearing Loss Association of America. Coming out of my hearing loss closet was a slow process, but every time I talked about my hearing loss, or asked someone to switch seats with me so I could hear better, it got easier. Last year I was bold enough to rearrange the entire Thanksgiving dinner table so I would have a seat more advantageous for hearing. I see my children watching me still, but now they are learning the self-advocacy skills they might need should they develop hearing issues themselves in early adulthood.
The more that people with hearing loss can see others like themselves achieving with purpose and ease, the more inspiration we will have to do the same in our own lives.
When I received the text from my son, I was surprised ― first that he would notice news about the queen of England, but also at his excitement at seeing a world leader and hero to millions wearing hearing aids. It shows the awesome power of role modeling. The more that people with hearing loss can see others like themselves achieving with purpose and ease, the more inspiration we will have to do the same in our own lives. He was excited to see someone modeling this for me.
Positive role models are probably even more important for children with hearing loss. It is exciting that the American Girl doll company decided to have Joss, its girl of the year 2020, be not only a fierce surfer girl but a hearing aid wearer. This is the first American Girl doll with a disability, an important step that models inclusion and diversity. I applaud them for it. The more that young people of all abilities see themselves represented in positive ways, the more confidence they will have in their own potential and the more optimism they will have for the future.
A role model could have made all the difference in my journey. I had to learn the hard way that having hearing loss did not mean I would never achieve my goals.
A role model could have made all the difference in my journey. I had to learn the hard way that having hearing loss did not mean I would never achieve my goals. I know now that I can do meaningful and productive work, enjoy social activities, contribute to my community and raise a family, all with hearing loss. And if you have hearing loss, so can you.
Hopefully, one day soon, someone wearing a hearing aid, no matter their age or occupation, will no longer be newsworthy. But until then, I will continue to enjoy showing off my hearing aids and feeling like a queen.
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