Why The Stigma is So Sticky

by Kathi Mestayer

 

Years ago, I read that if you lose your hearing (relatively) young, you adjust to it better.  That makes sense, given what we now know about declining brain plasticity as we age, and the importance of getting cochlear implants (for those who need them) as early as possible, so their brains are better able to adjust to the CI signals.

I’m from a hard-of-hearing family (or as Gael says, HoH).  My father started wearing hearing aids—first the body aids and then the cute little ones that were seated in his eyeglass frames—when I was very young.  I can’t even remember when that started; it seems like he was always hard-of-hearing.  Now, he has a cochlear implant.  My sister and I both started losing our hearing in our early 40s.

Dealing with Dad, as well as Aunt Claire and other family members, for so long made us really good at the skills you need to communicate.  I can rephrase a sentence instantly, direct my voice, slow down, and face people.  When I’m in a group conversation, I catch myself checking to see if I’m blocking anyone’s view of the speaker, so that everyone can lip-read.  Why on earth would anyone even try to start a conversation from another room?  I’ve become pretty good at spotting other hard-of-hearing people, especially when they’re “faking it”—smiling and nodding and hoping nobody notices—or if they consistently turn their head to one side when listening.

I never really “got” the stigma thing myself, at least not as acutely as many people do.  But I have talked, read, and written a lot about it.  To me, hearing loss just seemed inevitable, especially once Dad, his sister, and my sister developed it.  Sure, I get pissy and cranky about it sometimes, and the other day I told my husband, “I’m tired of being hard-of-hearing.”

So I was really curious about the stigma associated with hearing loss.  Why is it so strong?  Why don’t we try to avoid or hide our eyeglasses as diligently as hearing aids?  When I thought about it, I came up with several contributing factors.

The expectation that hearing aids will bring our hearing to normal (before hearing loss) is a big problem. Hearing aids really don’t compensate for hearing loss the way most eyeglasses correct our vision.  But people often don’t learn that until they’re had the experience, all too common, of adjusting their standards downward for the hearing aid’s actual capabilities.  Despite the great advances in hearing aids over the years, they just don’t work as well as the natural systems that most of us were born with.  If we were all more cognizant of that fact, maybe we’d hear “I tried hearing aids, and they don’t work,” less often.  We should know what to expect at the get-go.

Another contribution to the stigma is that hearing loss, especially at the mild stages, can be easy to hide, but it’s an illusion many of us cling to far too long.  In a 2011 study by ASHA and AARP, over half of the self-described people with “untreated hearing loss” said that minor hearing difficulties are easy enough to live with untreated.  Define “minor.”  I have to wonder if the respondents’ spouses and family members would agree.

My AHA moment came at a party.  The hostess, Kathleen, took me aside and said, emphatically so I would hear her, “KATHI!  Your FRIENDS really LIKE IT when you wear your HEARING AIDS!”  Okay, I can take a hint.  Time to take them out of the dresser drawer full-time.

Another reason for the stigma is cultural.  The basic difference between visual and sound signals was brought home when Lance Strate, professor of media ecology at Fordham, wrote about it in the New York Times in 2008.   According to Strate, sound is our species’ primary warning signal.  We can hear things that we can’t see, when we’re not facing them, even fast asleep.   That makes sound a very important alert medium.

“We evolved with speech, not with writing,” says Strate.   It’s nice to think of humans as having evolved way beyond that stage, but even in the contemporary world, our hearing loss might signal that we are less-than-ideal tribe members.  We’re more likely to miss the warning when brakes screech, a dog barks, a child screams, or the snap of a tiger stepping on a branch.

There are plenty of reasons for people to avoid owning up to and dealing with hearing loss.  I still meet people that I think of as independent-minded, grounded, brave, compassionate, but who will not wear hearing aids even though they can afford them.

My heart goes out to them.  They are missing so much, and further exhausting their tired brains by trying to make sense out of speech without the volume or the frequency tweaks that technology offers.

What can I do?  Write about hearing and hearing loss.  Talk about it openly at any opportunity. Give advice when asked.  Work with government agencies to help the HoHs.  Ask for accommodations.   Wear my neckloop as if it was jewelry.  Wear the “hearing aid smiley-face button.”  Get that blue metal flake ear mold and pierce it. Every time I do one of these “embarrassing” things, I hope I’m making it easier for someone else to do it next time.

 

 

kathy mestayerKathi Mestayer has been involved in hearing loss-related activities for many years.  She is a writer for Hearing Health Magazine as well as her own blog, Hearing Aids R Cool, and serves on the Advisory Board of the Virginia Dept for the Deaf and Hard-of-Hearing.

 

 

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About Gael Hannan

Gael Hannan is a sought-after speaker for her humorous and insightful performances about hearing loss. Unheard Voices and EarRage! are ground-breaking solo shows that illuminate the profound impact of hearing loss on a person’s life and relationships, and which Gael has presented to appreciative audiences around Canada, the United States and New Zealand. A DVD/video version of Unheard Voices is now available. She has received awards for her work, including the Consumer Advocacy Award from the Canadian Association of Speech Language Pathologists and Audiologists. Gael lives with her husband and son in Toronto.

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Neal Steiger

Not sure that I experience “stigma,” but my wife and friends share the frustration of impeded communication with different degrees of tolerance. I often have to say, “Please, repeat,” or words like that, or in noisy space, “Sorry, there’s so much background noise. Please say again?” I figure that people who aren’t patient enough to understand the need for slowing down the conversation don’t make good friends anyway. And nothing leads to social withdrawal and impending senility faster than pretending to have heard something that I didn’t. But stigma? I’m proud that I use whatever I have to try communicate… Read more »

Martha

It doesn’t even show has been the main theme song for the hearing aid industry for as long as I can remember.
I find it very interesting that we can wear all sorts of things in our ears and people do not think anything about
it, but lo and behold if it is a HEARING AID it is ‘different’ and definitely not “cool”. Things are getting a little
better each year. I look forward to having hearing aids or cochlear implants as fashionable attire just like
glasses.

Peter Taylor

When I was diagnosed with binaural hearing loss af he age of 35, I was crestfallen. Somehow, having one hearing aid at that age was terrible, and having two was inconceivable. I learn to get over it. Today, I wear hearing assistive devices openly and use every trick I know to hear people. Yes, I do fake it sometimes, I think that’s almost inevitable in some circumstances. I find that when you are meeting with someone in person, you can ask them to slow down; that never works owith people I n the telephone. People speak the way they speak,… Read more »

Elizabeth

I always thought part of the stigma was due to the majority of those with hearing loss being elderly. We don’t want to think we’re old, now, do we? So many young people wear glasses, but far fewer wear hearing aides.

CCAC

Nice point of view. We wrote a long paper (too long!) about the stigma of hearing loss and deafness a few years ago (never published or was it? Maybe I did a workshop ;-) – just if it adds a little to understanding. For us, stigma is a sociological term – it’s not inside an individual (although we internalize this stuff, yes). Stigma is a societal thing (and as said in this article, cultural too). I think there are huge social dynamics in how others (our groups, our societies) perceive deafness and hearing loss with all sorts of stereotypes that… Read more »

Gladys

As a late deafened adult hearing loss hit me like a “ton of bricks.” I did not know what all I was missing until others in my family got angry with me. Even hearing aids only helped a short time. I could not use the phone and work at my job, hear radio, the music , friends, and my loved ones. It is very different from growing up with a family who has hearing loss and they all wear hearing aids . There was no map or role model until I found classes , learned Speechreading and coping strategies. A… Read more »