Talk About Hearing Loss. A Lot.

Why is it that everyone who develops hearing loss seems to have to start at Square 1 to figure out what to do about it?

 I was reminded of this when I read an article by Deborah Copaken called PSA: Your AirPods Pro are Hearing Aids. It appeared on Copaken’s blog Ladyparts on Substack. Generally first time writers on hearing loss get a lot wrong, but Copaken got it right. Her discovery of the facts about hearing loss, however, and the apparent novelty of the information for those who commented on the article, reminded me of how little most people know about this condition.

Copaken is only 55, so her hearing loss isn’t age related. She probably had little cause to know about hearing loss because it wasn’t affecting most of her peers. But this lack of awareness is also true for people who are 65 and even 75, when two-thirds will be affected by diminishing hearing – and a diminishing ability to communicate. They don’t know about it either.

There are lots of books and blogs about hearing loss, my own included. Jane Brody writes about hearing loss every year or so. Articles like Copaken’s appear from time to time in the mainstream press and everyone seems surprised by the news. Recent movies have focussed on hearing loss. Sound of Metal was nominated for several Oscars. It got some things about losing your hearing right and some wrong. I haven’t seen CODA, streaming on Apple TV+, but my fellow blogger and HLAA member Shari Eberts wrote that it gives a mostly accurate portrayal of the effect of communication difficulties. A new documentary called We Hear You, produced and featuring members of HLAA, is not yet available to the public. But a preview and talkback are being shown by HLAA this week. Registration is sold out but keep an eye out for it streaming elsewhere.

Why aren’t these voices heard? Why is the fact that Medicare doesn’t cover hearing aids a nasty surprise to so many? Why isn’t it understood that the ubiquitous presence of ASL interpreters is useless to 95 percent of those with hearing loss? Why is that when you note on a plane reservation that you have hearing loss (Any disabilities?) they send a wheelchair to meet you at the gate?

The answer is stigma. Hearing loss is seen as a conditioning of aging – even though 60 percent of those with hearing loss develop it before they are 60. We reject the notion of aging in our society. Some of us think aging is when you’re over 90. Until we get there, we prefer to think of ourselves as forever 40. We don’t want to be old and we don’t want to hear about it.

Hearing loss affects people of all ages. It affects people who are exposed to noise, at work or recreationally. It affects those with inherited hearing loss. It affects people treated with certain drugs, drugs that may save their lives, like some cancer drugs. It affects musicians. It affects veterans as young as their 20’s. It affects almost half a billion people around the world, disproportionately the poorest — but the wealthy can’t escape it either.

Articles like Copaken’s are valuable because they reach a new audience, people who don’t (yet) have hearing loss. My book “Shouting Won’t Help” reached a new audience as well, because I was young and worked at the New York Times. (The reaction seemed to be, Huh? She has hearing loss?) Maybe “We Hear You” will too. It’s already won some distinguished awards.

We can all contribute to raising the profile of hearing loss, with an emphasis on the essential role of communication. We can normalize it, make people aware of the needs we have and the accommodations that work for us. Talk about your hearing loss. Make yourself – and the rest of us – heard.

**

For more about living with hearing loss, read my books “Smart Hearing: Strategies, Skills and Resources for Living Better With Hearing Loss” and “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook and paperback on Amazon.com.

20 thoughts on “Talk About Hearing Loss. A Lot.

  1. Well said. I just completed a 2-day hospital stay for dizziness. My sister (she’s my interpreter) could not stay in the emergency room with me; staffers said California state law does not allow. I saw 2 other patients who were allowed attendants. You are the only person I could think of to tell.

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    • That sounds infuriating. Were you given any accommodations? CART? This is an important issue and HLAA is working on it. I’m going to forward your comment to one of the people involved in providing hearing access for hospitalized patients.

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      • Oh Katherine I should have said she couldn’t stay in the emergency WAITING room with me. I think she was allowed in when I was being seen. But no, no CART, no accommodation.

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  2. Loved your blog. I share your sentiments. BTW, where did you get the statistic that 60% of those with hearing loss develop it before they are 60?

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  3. Dear Katherine:
    I wrote and recorded a song about hearing loss after I got my hearing aids — it’s called “WUT?.” That’s the actual voice of my hearing aid guru (Dr. Joseph Montano of Cornell Weill in NYC that you hear near the end, “critiquing” my scat singing).

    Don’t worry — I’m not offended by what he says — I wrote that line. Toward the end of my song I do a quick demo of putting my hearing aids in — it took me 5 years to get mine, so I know there’s a lot of resistance. Enjoy!

    “WUT?” by Christine Lavin (and Dr. Joseph Montano)

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      • Sure! I recorded that in the middle of the night in my cabin at the artists’ colony at Yaddo in Saratoga Springs in September 2019. My first night at Yaddo I got lost returning to my cabin, and then my left hearing aid fell out. I was in the woods, in the dark, but thanks to the flashlight on my iPhone I found my hearing aid! Onwards and upwards!

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  4. We all have to start at square 1 because, as you have said, well-meaning people still bring wheelchairs to the deaf. If we understood that we are presently in the midst of a hearing loss “pandemic” perhaps then there would be a more focused effort to treat and prevent hearing loss on a world-wide scale.

    Yes – stigma is the problem. Thanks Katherine.

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  5. Christine Lavine – I absolutely LOVE Your Wut?!!!

    I’ve been wearing hearing aids for about 57 of my 62 years. I hate the stigma! It’s hard enough bearing through the embarrassment caused by communication breakdowns, to face discrimination, to be isolated in a room full of people who may even be your family. Yet the marketing strategy of hearing aids manufacturers amplify that hearing loss and hearing aids are something to be hidden so that we can appear “normal”.
    The angle is not to stand tall, take notice and accept it but to cover hearing loss up as much as possible.
    For the most part there isn’t even a choice if you want people to notice your hearing aids and no wonder – they are not attractive. Once, in my 40s I had silver and purple aids with lifesaver swirl molds and short hair cut away from my ears – yes – I OWNED it! Yes – take notice – No I can’t hear you well, even with them on – these are tools and they don’t give me back normal hearing. I depend on lip-reading, communication strategies and advocacy.

    The nest two times I got hearing aids I could only get silver, tan or black. If we are going to destroy the stigma and come out of the hair with hearing aids then revolutionize the design to be attractive, flaunting and fun! Let people take notice and have the opportunity to have a discussion to blow some myths out of the water. Selective hearing?? Yes, but guess what – I don’t get to choose.

    Many elderly folks who could benefit from hearing aids find handling them too awkward and why? Because they are so darn small! Designs have been obliterated in the name of vanity that would have been way better for folks who fumble with tiny battery doors and slippery tiny expensive casings and molds strung on strings.

    We preach to the choir (and sing the blues!) but yet we keep hiding, on purpose! And yet hearing aids, communication skills, knowledge and advocacy are necessary keeps us connected, which in turn staves off depression, isolation, anxiety and loneliness not to mention the comorbidity of dementia and Alzheimer’s.

    And from NIH –

    About 28.8 million U.S. adults could benefit from using hearing aids

    Among adults aged 70 and older with hearing loss who could benefit from hearing aids, fewer than one in three (30 percent) has ever used them. Even fewer adults aged 20 to 69 (approximately 16 percent) who could benefit from wearing hearing aids have ever used them.

    Thanks for the chance to rant!

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    • When I got mine I wanted teal blue with sparkles, but I was told that only kids could get colorful aids, not adults. When I was the keynote speaker at a music conference a few years back in Stamford CT, Dr. montano was in the audience and I brought him up to explain my hearing loss on the chart (that chart is in my video).

      The next day he returned, set up in a conference room and did 60 free quick hearing tests for musicians who were concerned about their hearing.when he left there were still people who wanted tests, but he had to leave. I was worried when I knew my hearing was compromised, but helping others address it helps me deal with it myself. Am in subway. Here’s my stop. Bye!

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  6. Christine – I’d like to use your Wut?! as an intro to a presentation I’m doing at the MD Association of Rehab Counselors in November – would that be ok with you?
    You can reach me directly through jane.hager@maryland.gov.
    Thank you for the connection venue here, Katherine!

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  7. Hi Katherine, Great post. I know just what you mean about the stigma, having tried with disastrous results to tell one of my closest friends that she needed hearing aids. She said I completely spoiled her evening and acted depressed for the rest of the night. I haven’t dared bring it up again. BTW she has the beginnings of Alzheimers. xoxLeslie >

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    • That’s so nice of you to say about the doctors.
      But you are treating your hearing loss, unlike Leslie’s friend, so you’re giving yourself the best possible chance of slowing it down. I’m sure it’s frightening though.

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      • Time has given me the chance to study and learn what I can do for myself and to help teach others as well. Hindsight is wonderful but we can’t live in the past. I am in three different national Alzheimer’s ongoing studies so that they/I can monitor my progress. While I have many docs on my case, I still live each day to the fullest and advocate, educate, support and provide others with tools to help them with their journeys that mirror my own. This way we all can Step Up to what is before us and feel we are living and hearing the best that there is Right now.

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