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Happy Hearing Loss Awareness Month: ALDA, community, and allyship

by Grace Avila

Happy Hearing Loss Awareness Month! This month, I’m going to reflect on the past couple of years that I’ve been HoH and celebrate my journey and how far I’ve come. To those who are also HoH and late-deafened, I hope that you join me this month and celebrate your own story.

According to the National Institute on Deafness and Other Communication Disorders (NIDCD), “one in eight people in the United States (13 percent, or 30 million) aged 12 years or older has hearing loss in both ears, based on standard hearing examinations.” 13 percent of the United States’ population has hearing loss. If you happen to be one of those people, you might agree that learning how to live with hearing loss can be tricky, especially when the world seems to be against you and ableism is everywhere you turn.

As someone who is HoH, finding a community was one of the most helpful things for me. In 2019, I began volunteering with the Association of Late-Deafened Adults (ALDA) as the editor for their quarterly newsletter. Through ALDA, I had the opportunity to hear about other people’s experiences living with hearing loss, learned about the fight for movie theaters to include open captioning, and gained knowledge about hearing health and technology. In fact, I purchased a new hearing aid last summer because of an insightful article that I edited about testing out hearing aids! Another thing that I am grateful for are the people I’ve connected with through ALDA. They are proudly and unapologetically HoH and late-deafened. Each of them write confidently and tell their stories boldly. Finding a community helped me find people I could relate to and learn from.

Many of us had similar experiences when it came to navigating the world around us: struggles with understanding people in conversations over the past two years due to masks, the discouragement that came with someone saying “nevermind” rather than repeating themselves, lack of captions in virtual meetings, and listening fatigue. It was amazing to me that I was not the only one to experience these things.

Anne Marie Killilea, a member of ALDA, also added in her two cents. “There are at least three things I wish people would understand about being a late-deafened person: 1.) My brain is not the same as my hearing loss. Just because I cannot hear does not mean I can't think. This is in regards to not hiring me as a late-deafened nurse because I disclosed my hearing loss to potential employers. 2.) Don't ever think that just because I can't hear everything you say, I don't understand what you are saying! That’s not true! I can speech read (lip read) and understand more than you think. And 3.) When there are several televisions on at restaurants, why aren’t the closed captions automatically turned on?” Killilea said.

Others in ALDA envisioned what their perfect, accessible world would look like.

“In my perfect hearing world, there should be hearing loops in all restaurants, auditoriums, theaters and in all public transportation buildings to help those of us who cannot hear well with background noise,” Linda Bilodeau, a member of ALDA, said.

This month, I encourage you not only to learn more about hearing loss, but find ways that you can support those who are HoH and late-deafened. Some examples are:

  • Remember that hearing does not equal understanding. If someone with hearing loss is still struggling to understand what you are saying, consider writing or typing it out

  • Speak clearly and enunciate, especially with masks!

  • If you have a family member or friend who is hoh or late-deafened, consider downloading a live transcription app such as Ava or

  • Do not say “hearing impaired”. “hearing impairment”, or “suffers from hearing loss”. Please be mindful of your language!

  • Please caption your Instagram videos and Tik Toks, you never know who is going to benefit from them

  • And never ever say “nevermind”

These are all the things I know that I would benefit from immensely. Hoh and late-deafened friends, did I forget anything?? The list above are some ways that you can help out this month and every month after. Those of us with hearing loss thank you in advance for being more accessible and taking the time to educate yourself about how to be supportive to those of us with hearing loss.

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