There’s a moment in the movie CODA that shocked me – after all these years – with the visceral understanding of how similar and yet how different the experience of deafness is to someone who is culturally Deaf and to someone like me who is functionally deaf and oral.

CODA, which stands for Child of Deaf Adult, is about a Deaf family who live in a small fishing town where everyone else is hearing. Father, mother and young adult son are Deaf. Ruby (Emilia Jones), their 17-year-old daughter, is hearing.

She gets up at 3 am to join her father and brother on their small commercial fishing boat, partly as part of the crew and partly as interpreter. She’s the only interpreter for her family and although there’s a reference to a Deaf community, there seem to be no other Deaf people in town. In one scene she is signing at a doctor’s office for her parents (Marlee Matlin and Troy Kotsur, who are both deaf, as is Daniel Durant, who plays her brother). The parents have a fairly intimate problem and her father is not the least shy about expressing it in the most graphic terms. Ruby gamely edits as she translates. It’s a hilarious scene, and also touching.

At school, Ruby is shunned and made fun of, both for her Deaf family and for smelling like fish. Her brother is mocked when he tries to join others in a bar. The family has only itself, until Ruby finds a way to connect, and brings the family with her. It’s a moving coming-of-age story, funny and sweet, but with the twist of providing an insight into what life might be like for a Deaf family living in an isolated area.

But back to that scene. Ruby loves to sing and joins the school choir (really a chorus, singing nonsectarian pop music). She’s encouraged by the teacher, who sees real talent. The choir holds a concert and Ruby has a solo. She has a beautiful voice and her singing is mesmerizing. But then the camera shifts to the parents – and the sound goes off. You are watching them watch her in dead silence. Instead of faking it, pretending they’re appreciating it, they start signing to each other about what to have for dinner.

If I were in that audience, I also would not be able to appreciate Ruby’s singing. But instead of silence I’d hear a cacophony of sound. Without the visual information, I might not even know it was music. Where her parents are encased in silence, I’d be turning my hearing aids down to spare myself the noise. In the end Ruby finds a way to share her singing with her parents. It’s a beautiful scene, which I don’t want to give away.  

The Deaf and hard of hearing (like me) share many accommodation needs and should be partners in advocacy. In the past, this hasn’t always happened, maybe because the Deaf are afraid that accommodations that work only for them, like sign-language interpreting, will be threatened by accommodations like looping that work only for people with hearing loss, not the Deaf. But we share a need for captions. Marlee Matlin was an early and influential advocate for television captions. In 1995 she testified before Congress on the need for captioning on television, with the result that we now all have captioning on TV. (Now we just need to get accurate captioning on TV.) She’s a spokeswoman for the National Captioning Institute as well as for the largest provider of television closed captions.

You don’t have to be Deaf or hard of hearing to love CODA. But you may relate to it in a different way from those who don’t give their hearing much thought.

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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

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.

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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.

Sometimes, out of nowhere, my hearing loss catches up to me. My frustration about not hearing something important comes rushing back, a reminder of my difficult early days with hearing devices. It can quickly turn into panic.

Ordinarily I’m fine with my hearing aids and cochlear implant, supplemented by a remote mic when necessary, Otter a.i. for in-person captions, and Innocaption+ on my phone.

On Labor Day, though, there was a crisis, and I couldn’t access the direct-to-iPhone  Bluetooth link, which sends the audio to my hearing aid and cochlear implant. I had Innocaption captions, but no audio. It’s a challenging way to deal with an emergency.

I am living in rural Massachusetts at the moment, in a house with a dense woody area behind it going up a hill. My dog, Ollie, likes to sit outside in the evening, ready to bound in when I call him. (Treats are involved.) 

Monday evening around 6:30 or 7, I stepped out to call him. He was on the hillside, waiting expectantly. For some reason, I looked away and when I looked back up he was gone. I heard a loud strangled cry. I ran up to the hillside, afraid he’d been snatched by a coyote or a cougar.

No sign of him. Then I realized he was behind the house, behaving strangely. He’d encountered a porcupine and had a snout full of quills. They hung off his face and rattled when he moved.

My vet was closed but had emergency information on their phone message. I called one emergency vet after another. The most I could make out of what they said — using captions, no audio — is that they were full and could take no more animals. One suggested I get him a cone so I raced to the pet store before it closed. Another customer helped me try (unsuccessfully) to snap the cone in place around his neck. It wouldn’t have helped anyway.

How could Ollie go through the night with quills in his face? That’s when I started to panic.

Meanwhile I had texted my daughter, who took over the search. She found a vet about 45 minutes away, who told her I’d have to go to a different vet an hour and a half away because they were full. Her husband, a paramedic, got on the phone. A friend once said about my daughter’s husband, somewhat enviously, “Paramedics can do everything.” Apparently this includes talking a vet into accepting one more dog. They texted me the information.

I was low on gas and so went to the gas station to fill my car. It was closed. Labor Day. I didn’t think gas stations ever closed. A second was also closed. I finally found a third.

I was able to control my panic once the vet appointment was set up, and drove the long dark drive without incident. The vet took Ollie and said she’d have to sedate him. I said I would come back in the morning. It was not a peaceful night, but at least I wasn’t sleeping in the car. I picked up Ollie at 8 am the next morning and he seemed fine, if a little groggy.

What have I learned from this incident? I knew my phone was having sporadic trouble connecting with my new hearing aid. But I put off figuring out the problem. Yesterday, I had an appointment with customer support. Bingo, a very simple solution. Answer the phone by pressing the button on the hearing aid. I tried it on my next incoming call and it worked perfectly and even took me directly to Innocaption in case I also wanted captions.

Last week I wrote about being prepared for emergencies. I hadn’t really thought of a dog with porcupine quills on Labor Day evening and a nonworking phone connection as the kind of emergency I might encounter.

If one of your hearing instruments isn’t working properly, don’t put it off. You never know when you’ll need everything working perfectly.

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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.

We all want hearing aids to be more affordable. That’s the impetus behind the Over-the-Counter Hearing Aid Act of 2017. Although signed into law by President Trump, it is still not active, though it’s been on the FDA’s schedule a few times. In July, President Biden signed an executive order on Promoting Competition in the American Economy, which included a call for the FDA to issue regulations for OTC hearing aids in the next 120 days.

Audiologists should be reimbursed for their services, even if the hearing aids are bought over the counter. That’s partly up to to Medicare. A proposal to separate the cost of devices from the cost of audiological services would seem to benefit all.

The need for affordable hearing aids is also behind the movement for Medicare to cover hearing aids, which would likely have a trickle-down effect on private insurers. President Biden called for Medicare coverage for hearing services in his budget request for fiscal 2022, and it is part of the $3.5 trillion social-policy package that Senate Democrats just approved, along party lines. (This is nowhere near the last step, don’t expect any changes in Medicare soon.)

Affordable hearing aids are also behind the consumer-electronics push to issue devices. Two good devices are already available: The Bose Sound Control Hearing Aids, which go for $849.95 a pair. They are considered hearing aids by the FDA, but not OTC hearing aids even though you can buy them without an audiologist. They are the only hearing aid in their category. They’re so popular that Bose limits purchase to two pairs per customer.

The Apple Airpods Pro ($249 a pair on the Apple website) also have many of the features found in hearing aids. Apple does not advertise them as hearing devices, but experts like Abram Bailey at HearingTracker.com have praised their features and called them hearing aids in all but name.

Affordability is also behind Costco’s popularity as a hearing-aid retailer. Costco sells its own Kirkland brand as well as discounted aids from the major manufacturers. Costco has hearing professionals on staff. Consumers might want to buy at Costco and have their hearing aid services, like programming and cleaning, provided by their audiologist.

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Changes in all these areas could result in widespread availability of less expensive hearing aids, but there’s another problem, which is less often discussed. Audiologists aren’t reimbursed for services that may be needed with these devices.  

Writing on StatNews.com, a highly regarded medical website, three prominent specialists in the hearing field, addressed the issue. Frank Lin, Charlotte Yeh, and Cristine Cassel* urged Congress to distinguish between Medicare coverage for hearing aids and Medicare coverage for the hearing-care services of an audiologist.

Audiologists aren’t needed to purchase OTC hearing aids or any of the consumer-electronics devices. But audiological care can be crucial in ensuring that you’re buying something appropriate for your hearing loss, or that you don’t have an underlying condition that is causing the loss. They can also fit those OTC hearing aids, offer advice on how best to benefit from them, and repair them if necessary – for a fee, of course. The authors call these “essential support services” in maximizing the benefit of these devices.

Those who have more severe hearing loss will still need traditional audiologist-fitted hearing aids. FDA-approved hearing aids should be covered by Medicare. The authors are not arguing that OTC hearing aids be covered, just that audiological services should be. Distinguishing these audiological services from the cost of the hearing aid helps ensure that older adults with hearing loss can safely and optimally benefit from these new technologies.

So perhaps in addition to OTC hearing aids and other FDA alternatives, we need to change the way audiologists are reimbursed. This would be good for people with less severe loss, or not enough money to buy FDA approved hearing aids. But it would be good for audiologists as well. It’s clear that the hearing aid sales model is changing. Separating coverage of hearing aids from coverage of audiological services would seem to benefit everyone.

* The authors of the STAT article: Frank Lin is an otolaryngologist and professor and director of the Cochlear Center for Hearing and Public Health at the Johns Hopkins Bloomberg School of Public Health. He was a member of the National Academy of Medicine consensus study on hearing care that recommended the FDA create rules for OTC hearing aids. Charlotte Yeh is an emergency medicine physician and chief medical officer of AARP Services, Inc. Christine Cassel is a geriatrician and adjunct professor of medicine at the University of California, San Francisco. She was a member of President Obama’s Council of Advisors on Science and Technology which recommended that the FDA create rules for OTC hearing aids. The views expressed here are the authors and do not necessarily reflect the opinions of their organizations.

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.

It’s July 4^th weekend and for many of us it marks our return to at least some degree of socializing. Picnics are good. But beware fireworks, marching bands, ceremonial cannon shots. These are all part of celebrating our nation’s birthday. They are also all hazardous to your hearing health.

That may be even more true this year. Living in relative isolation, with quick trips to the supermarket, most of us haven’t been exposed to anywhere near the amount and intensity of noise that we encountered in everyday life pre-Covid. I wonder if this respite from noise now makes us more susceptible to noise damage.

Here are a few reminders of how you can protect your hearing.

Fireworks. Don’t stay home from celebrations, but do buy yourself a good pair of earplugs. You’ll still hear the boom, and earplugs won’t diminish the visual spectacle. A website called The Best Earbuds offers advice accumulated from readers and personal experience. This article from Healthy Hearing explains why fireworks are so loud, and also offers a guide to commonly encountered noise.

Yard cleanup. Don’t use that chainsaw to cut dead limbs without a good pair of noise-canceling headphones. I don’t mean those fancy Bose headphones that people wear on airplanes (which cost around $300). Headphones specifically made for yard work are much less expensive and better protection. A chainsaw registers at about 118 decibels. The Occupational Safety and Health Administration requires ear protection in the workplace at that decibel level for any duration of time.

Auto racing. You may be a diehard NASCAR fan, but auto racing is about the same noise level as a jackhammer — that is, LOUD. 130 dBs. The drivers and crew wear headphones. So should you.

Summer workouts. You want to get rid of the Covid 15. The weather finally cooperates. But if you’re motivating yourself with music coming in to your ears through earbuds, check the decibel level. You don’t want to improve your cardiovascular health at the expense of your hearing. Some experts recommend keeping the volume at 80 percent or below..

Outdoor concerts. What could the problem be? You’re in the great outdoors. But don’t forget that music (and sports) venues are designed to retain the sound. In fact, if the noise spills over into neighboring areas, the venue may have to be redesigned. There’s a reason so many musicians and fans have hearing loss and tinnitus.  Wear noise-canceling earbuds or headphones.

It’s summertime, and the livin’ is noisy. Hold on to your hearing so you can keep on enjoying it year after year. My iPhone has a decibel meter and I imagine other smart phones do as well. Check to see what you’re being exposed to. And if it’s too loud for too long, put on your noise-cancelling earbuds or headphones.

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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.