Treating Hearing Loss Globally

Earlier this month, marking World Hearing Day, the prestigious medical journal The Lancet announced the formation of a commission to study the impact of hearing loss across the globe.  Worldwide, more than 1.3 billion people have hearing loss and more than half a billion have disabling hearing loss. We usually think of hearing loss in terms of our own country, where the numbers are large – around 50 million – but minuscule in proportion to the staggering global numbers.

What does “disabling” mean when you’re talking about hearing loss? What is the impact of disabling loss on half a billion people?

For children, a disabling loss affects their ability to learn to speak, resulting in lower literacy and lower quality of life. For adults, a disabling loss can lead to profound isolation, withdrawal from community and family, an increased risk of psychological illness, and of cognitive decline, including dementia.

The new commission will include experts in otology, audiology, neuroscience, engineering, public health and public policy. Half the commissioners will be from low-income and middle-income countries. More than 80 percent of those with hearing loss are from these countries. The report is expected to be released on World Hearing Day in 2021.

In a Lancet article last July, (see my post The Toll of Hearing Loss is Global), several of those forming this commission described the need for a two-fold approach: Prevention and Treatment.

Prevention of childhood hearing loss would most benefit poorer countries, in a profound way: The authors suggested that prevention could reduce prevalence by 50 percent or more. Among the many possible solutions for prevention are vaccinations against rubella, measles and mumps, education about and treatment of other conditions, better maternal health care and universal screening of newborns.

Among the possible solutions for treatment are some that are already familiar to Americans with hearing loss: the use of non-FDA-approved hearing devices (less expensive than FDA approved hearing aids), better accessibility to hearing health care, the use of smartphone apps, telemedicine, solar powered batteries, and much else.

Although the incidence of hearing loss in the United States is lower it still is much higher than it should be, given our national wealth and resources. Our issue is not so much prevention as the lack of adequate and affordable treatment. In addition, in the U.S. hearing loss can sometimes seem like an invisible condition – and accommodations are often hard to find.

The commission’s attention to the worldwide toll of hearing loss should serve as a reminder that hearing loss is also a debilitating problem for many people here at home. Older Americans and the poor are disproportionately affected. We owe the same attention to treating hearing loss in the U.S., especially among the poor and elderly, that the Lancet Commission will be paying to the issue worldwide.

 

 

I Have a Disability. How About You?

December 3rd (that’s today) is National Disability Day, a United Nations recognized event also known worldwide as the International Day of People with Disability.

National Disability Day promotes education about the needs of people with disabilities as well as compassion and understanding of the challenges they face.

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Some disabilities are visible at a glance. People dependent on wheelchairs for mobility may have different degrees of severity of physical impairment but if they need a wheelchair, for whatever reason, they are eligible for accommodations under the Americans with Disabilities Act.

Hearing loss, on the other hand, is not only invisible but not everyone with hearing loss is disabled. Mild hearing loss is not usually a disability. Severe to profound hearing loss is, and these people are entitled to accommodations under the ADA. But many who have severe and even disabling hearing loss refuse to acknowledge it, fearful of stigma and discrimination. In order to get accommodations under the ADA, you must acknowledge disability. Many are unwilling to take that step. That complicates advocacy for all of us with hearing loss.

Deputy Inspector Daniel Carione of the New York City Police Department put this eloquently in a talk he gave at a meeting of HLAA’s New York City Chapter last spring. Carione was a 22-year much-decorated veteran of the NYPD when he was forced to take early retirement in 2011. The reason? He wore hearing aids. He decided to fight the ruling. Before he had any legal ground to stand on, he told the audience, he had to make an important admission to himself.

“The Americans with Disabilities Act is not this heroic shield that falls from the sky and protects each and every person who may or may not be disabled,” he said. “You have to be disabled. That was very difficult for me to accept.”

Dan Carione does not look disabled. He was—and is—a powerful physical and intellectual presence. To use the word disabled about himself defied the visible reality. But his attorney knew that admitting disability was essential. “One of the first things she taught me was to use the word disabled. It’s counter-intuitive. It hit me in the head like a dart because I didn’t want to use the word disabled. But if you’re not disabled, the ADA can’t protect you.”

As a hidden disability, and one with stigma attached, hearing loss is often not acknowledged. This harms not only those who refuse to acknowledge it but it also makes getting accommodations for the rest of us even harder. If a movie theater thinks you’re the only person in the audience who needs captions, that makes it easy to say it’s an expense they can’t afford. I go to a movie theater in the small town where I live part time. The audience is preponderantly gray. Statistics tell us that many have hearing loss that is severe if not disabling. Half of those in the United States 75 and over have disabling hearing loss, according to the NIDCD. But you’d never know it because you can’t see it and they aren’t talking about it.

So on this National Disability Day, if you have hearing loss and can’t hear a speaker at a lecture or at your place of worship, can’t hear at a movie, can’t hear that airline announcement, speak up. Ask for a hearing assistive device. Ask for captions. Ask for accommodations. Speak up for yourself, and you will be speaking up for all of us.

 

For more about hearing health, my book “Smart Hearing.” will tell you everything I know about hearing loss, hearing aids, and hearing health.Smart Hearing Cover final

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.

 

 

 

 

 

Let’s Make Hearing Loss a Visible Disability

Hearing loss is often referred to as an invisible disability, because there are no telltale markers — no wheelchair, no white cane. It’s invisible even compared to Deafness, with its vibrant silent language.

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NYPD Officer Daniel Carione and his attorney, Colleen Meenan, who successfully sued for the right to wear hearing aids.

For a long time, people with hearing loss wanted to keep it invisible. They wanted hearing aids no one could see, they pretended they could hear when they couldn’t. Even today hearing aid companies advertise: “So small no one will ever know you’re wearing them.” Hearing loss is for old people, or damaged people, and our culture values youth and health.

But as more and more of us use hearing aids – both because we are getting older and because we live in a noisy society – we want accommodations. We want captions on our TV’s and in movie theaters, we want hearing assistive devices that work in lectures and live theater. (The hearing assistive device that works best in large venues is the induction loop, hands down.) We want to be able to hear – even if it means “hearing” through captions – in an emergency room or hospital, in a courthouse, at a town hall meeting, at a house of worship, at a lecture, on an airplane, at a political rally, on public transportation.

We want to be able to work, and we want the accommodations that make that possible.

Hearing loss is a disability that prevents us from participating in corporate, municipal, religious, cultural, and educational life — unless accommodations are provided. Accommodations insure equal access.

We are guaranteed accommodations under the Americans with Disabilities Act. But if we want to claim those accommodations, we need to acknowledge not only that we have hearing loss but that it is a disability. (That’s the name of the act, after all.)

This notion was reinforced by the speaker at our HLAA-NYC chapter meeting last week. Dan Carione, a New York City police offer with an illustrious 28-year career, was forced to retire in 2011 when the NYPD decided officers could not wear hearing aids. He fought that ruling and won. (You can read about his four-year fight in an article published by Hearing Loss Magazine, or in a New York Times Op-Ed.)  But before he had any legal ground to stand on, he had to make an important admission to himself.

“The Americans with Disabilities Act is not this heroic shield that falls from the sky and protects each and every person who may or may not be disabled,” he said. “You have to be disabled.  That was very difficult for me to accept.”

Dan Carione does not look disabled. He was – and is – a powerful physical and intellectual presence. To use the word disabled about himself defied the visible reality.  “God bless Colleen [his attorney Colleen Meenan],” he said. “One of the first things she taught me was to use the word disabled.  It’s counter-intuitive.  Counter-intuitive, it hit me in the head like a dart because I didn’t want to use the word disabled.  But if you’re not disabled, the ADA can’t protect you.”

So if we want access equal to the access that hearing people have, we have to be open about our hearing loss. We have to acknowledge that it is a disability. That does not mean it’s disabling – it’s only disabling if we are denied the accommodations that make us equal.

For more information on living with hearing loss, see my books on Amazon.com.