It’s About Attitude

Ten years ago when my hearing dropped suddenly and severely, I despaired of ever living a hearing life again. Despite a cochlear implant and a sophisticated hearing aid, that despair seemed justified. I could hear, but I could not function in a hearing world

Some terrible times are burned into my memory.

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Photo by Pixabay on Pexels.com

Taking my daughter and some of her friends to a restaurant for her 21st birthday. My daughter sat next to me and helped with handwritten notes and clearly enunciated explanations, but that wasn’t enough. I was never even sure of her friends’ names, although I do know three of them were named Sarah.

Going to a college friend’s funeral in Cambridge in a beautiful Harvard chapel with terrible acoustics. Several old classmates were there but I didn’t recognize them and I couldn’t hear names clearly enough to know who I was talking to.

My children’s college graduations – both lovely occasions, of which I heard nothing, from start to finish. But even the milder hearing loss I had from age 30 on meant that I never really heard any school event, pre-k to graduate school.

The daily morning meeting of editors in my department at The New York Times. 15 to 20 people planning a daily section, of which about a fifth would be content I was responsible for. I delivered my information but I never heard the responses, or questions about it. I cringe at the memory.

Most of the 2008-2010 theater seasons. As theater editor I was expected to see as much as possible. No one said anything about hearing it. I remember going to a play with Ben Brantley, the theater critic. Not only could I not hear a word of the play but I couldn’t hear him in the intermission either. Did I tell him? Vaguely. Maybe. At that point in my career the stigma of hearing loss and aging was terrifying. (Readers of my memoir, Shouting Won’t Help, know that that strategy did not work!)

Now a mere a decade later, technology has delivered the tools I need to function in a hearing world. Over the next few weeks, I’ll discuss some that I personally use. Some allow me to hear at the theater, some at the movies, some over dinner in a noisy restaurant, some in a gym class, some to hear music again. I can go hiking and hear my companion ten feet ahead of me. I can hear everyone at my book club (as long as they speak one at a time). I can communicate with friends who are even deafer than me, friends I used to “talk” to over our computers sitting side by side. I can understand on a windy cold morning when someone asks me my dog’s name. (Oliver.)

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Oliver

But it’s not just technology that allows me to hear better now. It’s attitude. I ask for CART captions. I ask for a seat in the front. I ask people to repeat themselves slowly and clearly. I ask my Pilates teacher to wear my clip-on mic so I can hear her. I make myself tell everyone that I have hearing loss, and explain to them over and over again how to talk so that I can understand them. I credit my friends at the Hearing Loss Association of America, #HLAA, for showing me the way.

In addition, instead of giving in to my hearing loss, I make myself hear better. I make myself listen. I did auditory rehabilitation – that is, I practiced listening — in both informal and formal programs, and part of what I learned was how to listen.

I accept my hearing loss – I use my devices, flawed as they sometimes seem, I ask for help. Most of all, I demand respect. It’s surprising how successful that is.

Next week I’ll write about how technology has allowed me to  love theater again. The week after, I’ll write about the new live captioning devices that me possible conversation in a noisy place. And the week after that I’ll write about how a new hearing aid can completely change the way you hear, even if the one you already had was top of the line and cost more than you’ve ever spent on any one thing except maybe a car or a house.

 

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

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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.

 

 

 

 

 

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.

 

 

 

 

 

My New Book

SMART HEARING: Strategies, Skills and Resources for Living Better with Hearing Loss. Smart Hearing_Cover_highres

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook.

If you’re one of the the millions of Americans who have experienced hearing loss, whether newcomer or longtime veteran, this book is for you. It’s also for your friends and family, employers, counselors, clergy. Hearing loss is much misunderstood.

If you follow my blog, you’ve read some of this, but there’s much much more. Smart Hearing is an easy-to-read, comprehensive look at a big, confusing field. I hope you’ll read it, and share it with others who don’t seem to fully get what it is like to have hearing loss.

The opening chapters are about the basics: how to find an audiologist, how to buy a hearing aid, and how pay for it. Later chapters guide you through the world of assistive listening technology, CART captioning, hearing loops, and telecoils. Find out what a cochlear implant is, and who can benefit from one. Chapters on tinnitus and vertigo offer suggestions for prevention and treatment. (In the case of vertigo, some of the suggestions are from personal experience.)

The past year has been a tumultuous time in the hearing-health field. Smart Hearing untangles the confusion about over-the-counter hearing aids, PSAPs, the FDA and what it approves and what it doesn’t.

Everyday experiences are often frustrating for those with hearing loss: dinner parties, travel, work, restaurants. There’s a chapter on managing each of these challenges.

Finally, Smart Hearing urges reader to take note of the sometimes significant health costs of not treating hearing loss.

I hope you’ll read it and share it, and maybe even get your library to order it.