Stigma: Why It’s So Hard to Talk About Hearing Loss

This week the World Health Organization asked me to speak at the launch of their global Report on Hearing. The audience, from all over the world via Zoom, were primarily hearing professionals and public health experts whose work is about hearing loss but who don’t have it themselves. I was asked to speak about my hearing-loss experience.

I described myself as a deaf person who lives in a hearing world. I was well into adulthood when I lost my hearing, and it happened overnight. I was 30 and healthy, with no family history of hearing loss. One morning I woke up profoundly deaf in my left ear. I went to a doctor, who did many tests and found no explanation for the loss. I still had one ear that worked, however, so I ignored the loss. I didn’t get hearing aids. I never learned Sign language

Over the next 20 years the loss became bilateral and more severe. I had to acknowledge it – to myself anyway.  Telling others would come later. I finally got hearing aids when I was 52, 22 years after that first diagnosis. They worked well enough for a while. And when they no longer helped, after 10 years, I got a cochlear implant in my now nearly dead left ear. A stronger hearing aid helped in the better ear.

Why did it take me so long to get hearing aids? Why did it take me even longer to acknowledge the loss and ask for accommodations that would have helped me? I’m not alone in this delay. It takes people an average of 7 years from the time of diagnosis to treatment.

The answer is stigma. Stigma ranges from deep-seated fear and misunderstanding of deafness in some societies to an association of hearing loss with aging, and with cognitive decline and dementia.

The stigma of hearing loss has a long history, dating back to pre-Christian Hebrew law, which prohibited the deaf from participating in the rituals of the temple. Aristotle declared the deaf “incapable of reason,” and thus ineligible for citizenship. Jesus cast out the “deaf and dumb” spirit that possessed a child, and until quite recently some fundamentalist Christians cited that passage associating deafness with possession by the devil. Superstitions are still powerful in many societies.

The stigma of hearing loss is pervasive and hugely damaging.

Hearing loss is universally dismissed as a condition of aging. Millions of people simply retreat into isolation rather than take steps that would allow them to continue to be active members of society. That isolation leads to depression, depression contributes to dementia. A life lost because of the stigma of seeming old and useless.

Acknowledging hearing loss  is not easy. Coming to terms with deafness can take a long time. Hearing-health professionals need to understand that, and to help their patients understand. Professionals and patients also need to understand that although hearing aids work well for many, they are not enough for people with severe loss. We need additional devices and accommodations. Cochlear implants are miracles, but they are not a magic bullet. It takes dedicated hard work to learn to hear again with a cochlear implant.

Despite my hearing aid and my cochlear implant, the best technologies available, I still couldn’t hear. I lost my job, a job I loved. I could no longer function professionally.

But stigma was at work here too. My employer would have found another job for me, one that didn’t require hearing well, and would have provided accommodations like a captioned phone. I was too proud to acknowledge my loss, too ashamed to accept a job that would have been an acknowledgment of my disability. So I quit. I walked out. And that’s when grief hit me.

Grief is a totally appropriate response to losing your hearing. I grieved not just the loss of one of my senses, but the loss of my work, the loss of my self, the loss of my identity. I retreated into isolation and depression, combined with anger and continuing denial.

But I was lucky. I found a support group, almost by chance, the Hearing Loss Association of America, #HLAA.

I made friends through HLAA with people who had gone through what I had. We shared stories and strategies. We supported each other. We found a safe space together for our hearing loss.

I went on to write a book about my experience and to become an advocate for people with hearing loss. I found new friends, a new profession, a new life. I defied the stigma, and now I try to help others to do the same.

Hearing loss is preventable and it is treatable. That’s what the WHO report is saying.

Once we begin to treat it — with hearings aids, yes, for those with severe loss, but for the far more numerous cases of mild to moderate loss, with direct-to-consumer hearing devices – once we treat it, stigma will begin to fade away.

Everyone wears things in their ears these days. Apple sold 60 million Airpods in 2019. Airpods Pro include many of the same features as hearing aids and cost a fraction of hearing aids. Other less expensive hearing devices look like fancy bluetooth mics or expensive earbuds. Once enough people are wearing them, young people as well as old, stigma disappears.

It won’t be easy. But acknowledging the toll hearing loss takes on individuals and societies is a good start. Then we need to invest in prevention, education, and better technology.

We need to make hearing loss a thing of the past.

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Everyone’s experience of hearing loss is different. I invite readers to share their experience with hearing loss in the Comments section.

Here’s a link to the WHO Report. If you click on the video at the bottom you can see my talk and those of others.

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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.

26 thoughts on “Stigma: Why It’s So Hard to Talk About Hearing Loss

  1. Wonderful essay! My experience is different as I grew up with a hearing loss. However the stigma was realized early. My father wanted to hide my hearing loss. He was ashamed. Thus that spilled over on to me as a child. He emphasized perfect speaking. However speaking with a progressive hearing loss gets worse not better. Fast forward 60 years I’ve finally accepted my hearing loss. Lots of therapy plus the wonderful support of my HLAA peers. I now feel like a whole person mostly with two cochlear implants. They are not perfect. But knowing I have the loving support of my peers I’m a very happy person with a hearing loss! Thank you for sharing your journey with us!

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  2. Love this article! Very interesting about the history of the stigma of hearing loss! Thank you for defying the stigma and helping others to do so, too! And Yay for HLAA!
    Marilyn Weinhouse, HLAA-Denver Chapter

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    • Hi Marilyn, I did a lot of research on the stigma of hearing loss when I was writing Shouting Won’t Help. I came upon some horrific stories. But those were the days before hearing aids. No matter how much we may grumble about them they allow us to hear.

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  3. Katherine, you are lucky you had an employer that was willing to give you a different job, which is required by law even if you didn’t accept it. Most people’s experiences that I have read is that workers are being put on performance improvement plans and ultimately let go instead of the employer following the law and making accommodations. I have read so many comments from people about this happening to them on a group I am on and it is very sad. The worst part is the employer’s pretty much get away with it because even though there is a law it isn’t really on our side, or, people don’t have the know how or strength to fight back.

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    • Yes, I was lucky. But I had worked there for 22 years and had only the most sterling annual performance reviews. The problem really was a new department head – I was fine with the old one and with my previous bosses. So it was a pretty touchy situation for them. As you say, employers usually get around it — it can be very hard to prove you were fired for hearing loss. (I wasn’t fired, by the way – I took a buyout.)
      It was definitely a good move for me though. I’d never have written the books or made the friends I have if I’d stayed..

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  4. Katherine, you explained so well what hearing loss is. I grew up with a hearing loss in the 1950s. It was difficult for me to explain my hearing loss to those who were hearing. I am now age 84. I use to think I was the only one who did not hear well. Many think a hearing aid will give you 20/20 hearing similar to eyeglasses. Joining the Hearing Loss Association of America (HLAA) is the most knowledgeable organization for those who speak and listen and are experiencing hearing loss. HLAA shares the latest options for their hearing loss including hearing aids/cochlear implants that hearing aid health providers may fail to share with their clients.

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  5. Katherine I love you for your articles, which hit the issues right on the head. Your clarity is always helpful and inspiring. I am scheduled for cochler implant surgery in a couple of weeks, wish me luck.

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  6. Thank you Katherine. That was the best and most concise statement about the stigma of hearing loss I have ever read. I had not thought about hearing loss and the stigma attached to it in an historical sense.

    Generally my HA and CI make it possible to function at nearly normal levels. Now comes the COVID mask. I feel like my hearing loss has been shoved back to square one. The required isolation for much of the time sets it up for me to convince myself that being isolated is not such a bad idea. It’s like having permission to isolate (read withdraw) and not feel guilty about it. Of course, this is sick!

    Yet, it’s the truth. When this period of our lives passes and we do in fact return to “normalcy”, we will still have to deal with a culture that does not “see” our disability and find ways to help them to see us more completely. In my opinion, the ADA has not even begun to address the needs of the hearing impaired.

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    • Oddly, I’ve felt in general more connected during Covid. A couple of groups I belong to — book group, etc.made up of hearing people — were always a challenge to me. We’ve continued to meet on Zoom or other sites and the difference is that now I can hear them. I realized I barely knew some of the people I see regularly in these groups before. Of course it will be wonderful to see friends and family, to hug people and kiss babies, cry at weddings, I’m a little anxious about it. Re-entry anxiety. I like your thought about our having permission to withdraw and not feel guilty about it.

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    • Thanks Shari. It was actually a wonderful event. There was one other speaker with hearing loss, a young woman who has a travel TV show (I recommended her to Holly for your project) and a sweet South African choir who sang and signed. And lots of speakers from other countries. It made me feel like a citizen of the world, not just the US.

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    • Ah, yes. Sometimes I think it’s hardest for the spouse. (As I wrote that I realized that I thought you were the one with hearing loss. But is it your spouse? A different issue entirely.)

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  7. What an excellent article Katherine! It is so true. I loved your book – it’s the only book I have found that discusses hearing loss at all. I grew up with a unilateral hearing loss -I’m profoundly deaf in my left ear and have a now mild- moderate loss in my right ear . This was due to having meningitis as a baby (17 days old) almost 42 years ago. I had extra support at school from year 3-12 from wonderful itinerant support teachers who advocated for me and was largely the only and first person in my school who had hearing loss so we had to educate a lot of teachers and peers who knew very little about hearing loss and were not always supportive initially . I didn’t wear hearing aids until I finally went to get my hearing tested for the first time since I was 18, about 4 years ago despite noticing a difference in my hearing in my 30’s. The audiologists have been fantastic. I now wear a CROS aid and hearing aid . CROS stands for Contralatoral Routing of Outside Signal and takes the sound from my dead left side into my right ear . It is AMAZING! Now I don’t have to turn my head every time I want to hear something on my left side ( a hard habit to break) . I used to imagine this type of hearing aid in primary school but could never work out how to get the two sides to talk to each other
    ( thank you Bluetooth!).
    The stigma around hearing loss is real – I am still learning to talk about it and deal with the grief of losing hearing in my right ear. I never thought about the loss much in my right ear growing up but it’s definitely there now. I have to really watch my energy levels . I’m a musician as well and have been playing the violin since I was 3 . I had one violin teacher who refused to teach me because of my hearing loss as a child – we found another teacher, and other who was extremely negative . Other violin teachers were more supportive. I played in orchestras from the Age of 8-16 then joined the orchestra I play with now 20 or so years ago which is a great group of friends. The CROS helps there too. A lot of smaller sounds are coming back but the hardest thing to deal with is the fatigue and occasional tinnitus which comes from over tiredness.
    I’m in Canberra Australia.

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    • How great that you can play in an orchestra. When I was writing Shouting Won’t Help back in 2011 and 2012 I met many musicians with hearing loss and included their stories in my book. I love music, though I have never been a musician, and my hearing loss has made listening to music a challenge. But if I watch, with captions, the words add to what my (deficient) ears are hearing and I can still get a great deal of pleasure out of it. I can listen to a solo singer or player, but I can’t hear harmony. I love opera and can still enjoy the singing, though not the orchestral music. Thanks for sharing your experience.

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  8. It is so good to read your post, and congratulations on the recent speaking opportunity. I’ve found that some people hide their hearing loss because there is an implicit bias about one’s hearing ability. I hid mine for a number of years because I observed how people acted awkwardly around me when they discovered I was hard of hearing. We need to de-stigmatize the words “hearing loss” by continuing to share our stories.

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    • I agree about the term, and in fact HLAA changed the name of its magazine from Hearing Loss to Hearing Life. But whatever we call it, it’s the condition itself that’s stigmatized.

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  9. Love your blog on stigma. Love your WHO talk. Love you.

    Hearing aid manufacturers are guilty of promoting “invisible” devices, fostering the belief that hearing aids can magically restore hearing and charging outrageously high prices for them.

    Congress is guilty of failing to make Medicare cover hearing aids and to require private insurers to pay more than a tiny amount toward their cost.

    I, too, was helped greatly by HLAA to cope with hearing loss. But, as a hearing loss advocate, I urge all who read this to do less preaching to the choir and more outreach to the clueless majority of Americans who think all of us are ASL fluent or we’ll hear them better if the just raise their voices.

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    • Thanks for the nice compliments Jerry. And I couldn’t agree more about what needs to be done. Definitely Medicare and insurance coverage are needed. But also the FDA has to get moving on OTC hearing aids. They were supposed to issue guidelines last summer. As we heard at our chapter meeting last week, they’ve found plenty of time for other non-Covid related business. There’s no excuse for stalling on the OTC regulations.

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  10. I can laugh now. But at the time it was harder. I was living with Jim, who was 23 years older, when I decided at 28 to get hearing aids. I was in a new town, and it’s hard to make friends if you can’t hear what they’re saying. Jim told me to “say anything — that will be more interesting.” But I think he was more worried about the stigma attached to aids than I was. And I think he thought hearing aids would be disfiguring. I went ahead and got some and wore them all day, every day for two years before I finally just told him that I was. His response was essentially a shrug. It’s not always the person with hearing loss who is reacting to the stigma. How I wish I could have heard your talk!

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