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.