What causes hearing loss stigma? Does it come from within — our own insecurities about whether we are now as whole as we once were before we lost our hearing? Or from external factors like societal pressures that demand perfection and youth. For me, it started in my childhood, watching my father struggle with his own hearing issues. He wore one hearing aid, then two, but always kept his hair grown long over his ears to hide them, even when this was no longer in fashion.
Many of us with hearing loss battle stigma for years. We worry people will think less of us because we cannot hear well or that they won’t want to bother taking the extra effort it takes to communicate with us in certain environments. It can sometimes feel easier to disengage, sitting home alone rather than take the risk of social interaction. But we know that is not the right answer.
In We Hear You, our award-winning documentary about the hearing loss experience, we address this issue head-on. Each of the individuals featured in the film hid their hearing loss for many years — some more successfully than others. All kept their hearing aids hidden behind long hair and never told anyone about them. Until something changed. For each of us, once we learned to accept our hearing loss, the pressure receded. We felt better and we communicated better.
Do you recognize yourself in the captioned clip below?
To watch the full documentary, visit Vimeo On Demand. Ten percent of proceeds will be donated to hearing loss charities.
My Battle with Hearing Loss Stigma
When I was diagnosed with my own hearing loss in my mid-20s I was terrified. Memories of my father sitting alone flooded my thoughts. Would I now be the one missing whispered conversations? Would I spend my time sitting alone at social events sitting apart from family and friends? I vowed this would not be me, choosing to ignore my hearing loss instead, hoping foolishly that it might disappear.
I faked my way through important conversations and avoided colleagues at work that were hardest for me to hear. Denial and shame were my constant companions. It took me more than 10 years to shake them.
Eventually, my hearing loss worsened to the point where I could no longer fake it and still perform my job. But even when I finally purchased hearing aids, I didn’t always wear them. I would sneak them in before important meetings at work and rip them out quickly afterwards, never wearing them socially or at home. Sadly, I was following in my father’s footsteps of embarrassment and concealment.
My Children Taught Me to Accept My Hearing Loss
But then I had children of my own. I saw their tiny eyes watching me hide my hearing loss and being embarrassed by it, just like I had watched my father all those years ago. I was passing on the stigma that I had inherited from him. What if my children developed hearing loss as adults like I had? My loss is genetic so it is possible. Would they feel the same shame and discomfort? I needed to break the cycle. So I did.
I began wearing my hearing aids all the time, asking for quieter tables at restaurants, and teaching my friends and family the best practice communication tips that help me hear my best. I started volunteering at hearing loss non-profits and met other people who understood my struggles. They taught me the tips and tricks I used today to navigate life with hearing loss and helped me feel less alone. Finding others like me helped me heal.
Hearing Loss No Longer an Unmentionable Topic
Hearing loss is no longer an unmentionable topic in my family. We discuss it as often and with as little fanfare as my love of yoga or my poor sense of direction. It is just one part of who I am, and one that I no longer need to hide. I see my children watching me still, but this time they are learning the self-advocacy skills they will need if they develop hearing issues themselves.
My children helped me battle back stigma. I hope by sharing my story, I will help others to do the same.
Readers, where did you learn your hearing loss stigma?