Stigma is defined as “a mark of disgrace associated with a particular circumstance, quality, or person.” It often arises from external forces like prejudices, stereotypes or societal norms, but it can also come from inside ourselves — perhaps as we internalize the negative perceptions of others or suffer from a generalized fear of being different from the norm.
Stigma surrounding hearing loss can make us afraid to admit that we have trouble hearing. The shame and embarrassment of stigma drives us to behave in unproductive and unhealthy ways, like neglecting to ask friends and family to use communication best practices or refusing to seek out the professional assistance we need. It may lead us to avoid socializing or prevent us from applying for a deserved promotion. Over time, these behaviors can lead to isolation, depression, and a plethora of health problems.
We must nip hearing loss stigma in the bud. But how?
Hearing Loss Stigma Can Take Many Forms
Stigma takes many forms. It can be overt, like when people make jokes about people with hearing loss being stupid, or old, or when people smirk and reply “What?” whenever you mention your hearing loss. These actions are rude and likely a result of ignorance. As hearing loss becomes more common, these overt actions may begin to fade away.
More often with hearing loss, stigma is subtle — a gentle exclusion from a conversation or outing because of the extra work required to make sure that you can hear. We may impose it on ourselves by skipping out on a social event or dinner with clients for fear that we will have trouble hearing. It can occur at the doctor’s office, when medical personnel address questions to your family instead of to you, treating you as if you are incapable of understanding when your only real issue is hearing loss. We must rely on self-advocacy and education to change these behaviors.
My Battle With Hearing Loss Stigma
Hearing loss stigma was a significant force in my home growing up. My father had hearing loss, but never discussed it, creating an unmentionable topic that festered and weakened our family relationships. He never asked us to use communication best practices or to rearrange the seating at a meal so he could hear better. We didn’t know how to help him and so we did not adequately try. I look back on this with regret. His fear of discovery and shame about his hearing issues eventually drove him into isolation and sadness, tearing our family apart.
When I developed hearing loss as a young adult, I followed in his footsteps, hiding my hearing loss and living with denial and secrecy. But once I had children this all changed. I saw them watching me laugh at jokes I hadn’t heard and faking my way through conversations — just as I had watched my father do. I knew something had to change. I needed to break the cycle of stigma before it infected my children as well. So I did.
Breaking The Cycle of Hearing Loss Stigma
Breaking the cycle of hearing loss stigma takes hard work and determination. Each of us must battle it individually to some degree, but we can also take it on together, as a hearing loss community. If you are struggling with hearing loss stigma, or want to see it wither away, here is what you can do.
1. Get educated. Knowledge is power so be sure to get your hearing tested to understand the type and severity of your hearing problems. Learn about the variety of hearing assistive technologies that are available including hearing aids, cochlear implants, and assistive listening devices like pocket talkers and Apps. More choices will be available when the new class of OTC hearing aids hit the market in 2020/21.
2. Understand your specific hearing challenges. Everyone’s hearing difficulties are unique so each of us must learn to identify which listening situations are most problematic and, through trial and error, which adjustments or accommodations are most helpful. Then we must take the next step: Be brave and ask for and utilize the assistance that we need.
3. Make peace with your hearing loss. This was a tough one for me but it is an important one. If we seem comfortable with our hearing loss, others will be too. We must forgive ourselves if we miss some of the dialogue in a social situation and pace ourselves so we can maintain energy for future conversations. And if something goes wrong, that is okay. Some of the mis-hearings can be hilarious if we let them be.
4. Normalize it. Don’t let hearing loss be an unmentionable topic, like it was in my house growing up. Do the opposite. Talk about your hearing loss as much as possible — when you meet new people or are in an unfamiliar group setting. You will be amazed how many others will relate to your experiences.
5. Be your awesome self. Live your life as you see fit, without reservation or fear. Successes will help you will build confidence and show others that people with hearing loss are capable, smart, and uniquely talented, just like everybody else. Failures will provide opportunities for learning and growth.
6. See that you are not alone. Stigma thrives when we feel different. Seek out hearing loss peers that can relate to your frustrations and provide comfort on your most difficult hearing loss days. At my first Hearing Loss Association of America (HLAA) meeting, I was amazed at the wonderful things other people with hearing loss were accomplishing in their lives. This gave me hope that I too could lead a dynamic and happy life despite my hearing issues.
7. Advocate for change. Be the force for change that you would like to see in the world. Ask for accommodations at work or at your place of worship, at museums and entertainment venues. And when they are available, utilize them with pride. The more accommodations are used, the more likely their prevalence will expand. Self-advocate with your family and friends. They may not know you need help if you don’t ask.
Readers, how do you combat the stigma of hearing loss?