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.

Kathi 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.