Hearing Mom

Sunday is Mother’s Day. I miss my mom. But I especially miss all the things I didn’t hear her say.Mom and me 2013

In her 80s, my mother’s mind and body succumbed to aging. She developed dementia, she had frequent falls and she often needed a wheelchair. But her hearing remained acute. Mine did not.

After my father died, when Mom was 85, she wanted to stay in the house they’d lived in together. It was far away from any of her children, and she had 24-hour-a-day nurses’ aides. Despite this attention, she often fell or had other physical issues that would send her to the hospital, then into rehab to recover, then home again with an aide, only to fall or suffer heart problems or infections once again, and start the cycle over.

Eventually, against her wishes, my siblings and I decided she would be better in the long-term nursing care facility at the community where they lived. She ended up thriving there.

But while she was still living at home, my hearing was a significant obstacle. It was difficult for me to hear her on the phone — and frustrating for us both — so I visited as often as I could. Even when I visited her, though, her soft voice and increasing dementia made it hard for me to understand her. My hearing loss also created some potentially dangerous situations. If I had to call her doctor or even 911, I couldn’t hear their responses. I’d hand the phone to my mother to listen for me and hope she was correctly repeating whatever the doctor said. I didn’t know about captioned phones then, or I’d surely have ordered one. If Text 911 had existed, that would have removed another barrier to communication.

Once she was in the nursing facility, there were fewer crises. But as she became less clear mentally, and as her voice weakened, I not only couldn’t understand what she was saying, but I was never sure she was saying what I thought she was saying. It’s hard enough for a fully hearing person to converse with someone with dementia. Imagine what it’s like when you aren’t sure you’ve understood correctly.

My mother died in 2014. Every mother’s Day I think about all that I missed in those last years of her life. Despite hearing aids and a cochlear implant, and hearing-assistive devices galore, my hearing and her dementia still created an enormous gap. The only way across it was with smiles and hugs and just being there — for her and for me.

Most people’s hearing problems are not as severe as mine. But if you’re having trouble hearing an elderly parent with a whispery voice — or if the parent is having trouble hearing you — don’t let that happen. If you are not ready for hearing aids, buy yourself a handheld device such as a pocket talker.

But whatever solution you come up with, don’t let those words be lost forever.

(A version of this post was first published in 2015 in AARP online.)

Photo courtesy of Katherine Bouton

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_highres

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.

Theatre for All

Theatre is one of the world’s oldest forms of entertainment, but in recent years I’d stopped going. My hearing loss was too big a barrier to enjoyment. Now, thanks to technology, I once again have access to theatre, and I’m loving it,

On Easter Sunday afternoon my husband and I went to see The Ferryman, the much acclaimed play by Jez Butterworth that takes place during the Troubles in Ireland. It’s a big cast with many voices. As recently as two years ago the only way I could have seen the play was if the Theater Development Fund had offered an open captioned performance through its Theater Access Program. iStock_000002637313Medium

This Sunday performance was not open captioned. But it was fully accessible to me, for two reasons.

The first is that the theater is owned by the Shubert Organization, which has installed a hearing loop. (For a list of other looped theaters, check out audiologist Louise Levy’s website.) If you have a hearing aid or cochlear implant with a telecoil, all you have to do is change the program to telecoil mode (usually by pushing a button on the earpiece) and the sound will go directly into your ear. If you don’t have a hearing aid with a telecoil, you can use the theater’s headset, which you get at the concierge desk. But really, just go back to your audiologist and ask for a telecoil. It costs almost nothing.

The second reason is captions. My hearing loss is severe enough that the enhanced sound delivered by a hearing loop is sometimes not enough especially in a multi-character play (with Irish accents). Understanding that the loop won’t help everyone, including the signing Deaf, many theaters usually also offer a handheld captioning device called I-Caption. Captions are also availably for your own phone or tablet from GalaPro. For I-Caption, you pick up the device at the concierge desk and drop it off when you leave.  It’s important to remember that captions are not available on I-Caption or GalaPro until four weeks after the show’s opening.

For the second act, I switched to GalaPro. This time I methodically set the captions up during the intermission, so they were ready to go as the curtain rose. The captions were almost perfectly synced to the dialogue and I barely missed a word from that point on.  Given the fast dialogue, Irish accents, and the need for sheer listening stamina (the play is three-plus hours), my guess is that I heard, and retained, more than most of the people in the theater. The combination of sound via the loop and sight via the captions may have made me the best hearing person in the theater.

The GalaPro app is free and available for iPhone or Android. You need to be sure you know the correct steps to activate the captions – before the play begins. It’s not difficult to set up, and the concierge desk can help, but don’t wait till the last minute to get started.

You begin by putting your phone into airplane mode and then sign onto the theater’s wifi system. Scroll down the list of shows to the show you’re attending, and fill in the password. This last step is the one that stumped me. What IS my GalaPro password? Turns out you don’t need one. The site actually tells you the password (GalaPro1). But if you wait till the curtain is about to go up before completing the setup, you’ll find yourself literally in the dark and caption-less until intermission. Yes, this has happened to me, more than once.

You can check whether GalaPro is available at the show you want to see by going on TheaterAccessNYC, another useful tool offered by the Theater Development Fund, in this case in partnership with the Broadway League. The website is just one of many TDF services that make Broadway theater accessible to almost all. In addition to open-captioned performances, TDF-TAP also offers ASL-interpretation, accessibility for the blind and for people with disabilities like autism. The TKTS booths (at Lincoln Center, in Times Square, and at the South Street Seaport) sell same-day half-price tickets. TDF also offers special pricing for students, the elderly and many other groups. See here to find out if you qualify for membership.

GalaPro does have limitations, especially in a play with very fast dialogue. I saw Theresa Rebeck’s Bernhardt/Hamlet last fall, with the magnificent Janet McTeer playing Sarah Bernhardt. The play itself is intricately layered with McTeer playing Bernhardt playing Hamlet. It’s also very very fast. Everyone once in a while GalaPro seemed to take a breather, so I did miss some lines.

I haven’t tried GalaPro at a musical but I imagine the captions have an easier time keeping up, especially with the songs, which inevitably repeat many phrases. I’m seeing Kiss Me Kate later this month, with open captions via TDF-TAP. I’ll keep an eye on GalaPro for comparison.

Meanwhile, the loop can work very well on its own for me. Last week I saw What the Constitution Means to Me, Heidi Schreck’s autobiographical play. I had good seats, with a good sightline to the actors, and thanks to the loop I understood every word.

I’m very lucky to live in New York, where I have easy access to the theater. Until recently, I didn’t go much because it was too hard to hear. Gala Pro, I-Caption, and looping have given me back the theater again.

Meanwhile, here’s a list of looped venues across the country, with thanks to David Myers and Jerry Bergman.

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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_highres 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.

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.)

Ollie on bed
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.

 

 

 

 

 

Crowdsourcing Hearing Info

The Mayo Clinic, in collaboration with the Hearing Loss Association of America (#HLAA) and the Ida Institute, an independent non-profit organization that promotes hearing health, has established an online forum where you can find support, answers to specific questions, share experiences and even gripe if you feel like it.

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Photo by Pixabay on Pexels.com

The forum is monitored by Mayo Clinic staff as well as volunteer mentors, and this oversight should help keep the discussions civil and the information credible. I’ve been following it for the past couple of weeks and I’ve found a lot of interesting information, and a lot of people whose hearing-loss experiences help put my own in perspective.

To join the group:

Go to https://connect.mayoclinic.org/group/hearing-loss/.Click on the “Join” button at the top, create a user name (you can use a nickname or a first name plus @ — for instance Katherine@), enter your email address and follow the prompts.

Anyone can read the discussions, whether or not you join, but if you want to initiate a topic or comment on an existing discussion, you’ll need to fill in information in the section titled “Introduce Yourself.”

An online forum is not a substitute for an in-person support group. Whether you are new to hearing loss or a veteran of hearing loss, you might benefit from joining an HLAA or ALDA (Association of Late Deafened Adults) chapter near you. But I also recommend joining this forum. You can learn from the discussions and also contribute to others’ knowledge.

(If you think you’ve already read this post, you’re right! It was published in a longer form a few weeks ago. Now that I’ve had a chance to read the discussions over a few weeks, I thought it was worth another post. Please share your experiences.)

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.

 

 

Answers to Questions About Hearing Health

black and white business career close up
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We all have questions about our hearing, our hearing aids, and our life with hearing loss. How can we enhance our hearing experience? How do we deal with hearing related issues like tinnitus and vertigo? How does hearing loss affect cognitive health?

Sometimes these issues may be addressed at HLAA chapter meetings, or through informal contacts made at HLAA’s annual convention (to be held this year in Rochester, June 20-23). Books like mine also offer information, as does the HLAA website. But now the Mayo Clinic is offering a new service where people with hearing loss, at every stage of their life, can get and share information with others.

The Mayo Clinic, in collaboration with the Hearing Loss Association of America (#HLAA) and the Ida Institute, an independent non-profit organization that promotes hearing health, has established an online forum where you can find support, answers to specific questions, share experiences and even gripe if you feel like it.

The forum is monitored by Mayo Clinic staff as well as volunteer mentors, and this oversight should help keep the discussions civil and the information credible.

To join the group go to https://connect.mayoclinic.org/group/hearing-loss/. Click on the “Join” button at the top, create a user name (you can use a nickname or a first name plus @ — for instance Katherine@), enter your email address and follow the prompts.

Anyone can read the discussions, whether or not you join, but if you want to initiate a topic or comment on an existing discussion, you’ll need to fill in information in the section titled “Introduce Yourself.”

Existing discussions address hyperacusis, how to improve hearing clarity, tips for speaking to someone with hearing loss, acoustic neuroma, trouble with TV captions, Meniere’s disease, dealing with tinnitus and much more.

An online forum is not a substitute for an in-person support group. Whether you are new to hearing loss or a veteran of hearing loss, you might benefit from joining an HLAA or ALDA (Association of Late Deafened Adults) chapter near you. But I also recommend joining this forum. You can learn from the discussions and also contribute to others’ knowledge.

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For more about hearing health, my book “Smart Hearing.” (2018) will tell you everything I know about hearing loss, hearing aids, and hearing health. “Shouting Won’t Help,” (2013) will tell you how I coped with unexpected hearing loss 

You can get them 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.

 

 

 

 

 

The Language of Disability: It Can Be Hard to Get It Right

Last week I went to a panel discussion organized by the New York Museum Access Consortium. There were four panelists representing different disabilities and a moderator from MAC. The audience was made up mostly of people from disability rights organizations and museum personnel.images

The evening’s topic was “Mindful Communication.” Avoiding hurtful or offensive language when talking about disability isn’t as easy as it sounds. “People first” is a generally accepted standard. To use hearing loss as an example, a person is not “hearing impaired,” because that suggests that the way he or she hears defines who he or she is. We prefer “people with hearing loss.” (For more on parsing terms for hearing loss see my post “Deaf, Hard of Hearing, Hearing Impaired? Be Careful What You Call Us.”) It took me a long time to realize that “hearing impaired” is a distasteful term to many with hearing loss – and I have hearing loss! So I’m relatively easy on others who slip up on the politically correct terms.

After the panelists introduced themselves, with visual descriptions for the blind in the audience, the moderator led the discussion with a variety of questions. I can’t do justice to the full hour’s discussion but a couple of comments stuck with me.

The panelists were asked what kind of language they found offensive. I expected to hear them say that casual ignorant slurs were hurtful. Instead, the answers were much more complicated.

Ansel, who has visible disabilities and uses a wheelchair, said he dislikes it when someone trying to be kind says: “God bless you.” He doesn’t feel the need to be blessed, and finds it condescending. But he doesn’t get angry. “If it makes them feel good, it’s okay.”

Nefertiti, who is blind, dislikes being called “amazing.” When she was growing up, people were always saying how amazing she was. “I was such an amazing kid just for getting up in the morning! It gave me a little bit of an ego.” She prefers to think of herself as “just a human being doing what I do. It doesn’t mean I’m amazing just because I’m blind.” Of the term “disabled” she said cheerfully, “I feel pretty abled.”

In the question and answer period, one museum employee spoke about the difficulty of using correct and acceptable language in written literature like museum guides. “We’re working with a staff with a fear around language,” she said, to nods of agreement from others in the audience. Another of the panelists, Madison, suggested that staff take their lead from the community in question. Nefertiti similarly suggested listening to the person or group and then mirroring the language they use.

This brought the conversation back around to the panel’s topic: Mindful Listening. Mindful Listening is always important, as Nefertiti pointed out. If, for instance, a sighted person offers to help a blind person cross the street, and doesn’t listen to a polite “No thanks,” nobody wins: “The blind person is offended and the sighted person is baffled.”

Some of the more digressive responses were also insightful. One of the challenges Nefertiti faces as a blind woman was something I’d never considered. Being blind, she said, means that she misses the culture of body language. Someone will say “She’s a nice girl but….” Think of all the ways you could end that sentence without saying another word:  With a shrug (suggesting “… she’s not very effective at her job”), with a roll of the eyes (“…. the clothes she wears make her look like a slut”), with a shake of the head (“… not for me!”), with raised eyebrows accompanied by a shoulder hitch (“… who knows what she’ll get into next”). Etc.

A full transcript of the discussion can be found here. 

Coincidentally, this week Major League Baseball announced that it would discontinue use of the term “Disabled List” for players who were injured. The change came about after advocates for people with disabilities complained, according to the New York Times. The Times quoted Jay Ruderman, president of the Ruderman Family Foundation, which encourages greater inclusion of people with disabilities in society: “The disability community identifies with the term ‘disabled,’” he said “When it’s used incorrectly, when someone is injured, not disabled, that’s offensive.” He went on: “People with disabilities do not consider themselves injured….Someone who tears an A.C.L. is not permanently disabled.”

It’s true (usually) that they are not permanently disabled, but should they happen to use a wheelchair for a period of time, they are entitled to the same rights under the Americans with Disabilities Act as people with more permanent disabilities. Nobody ever said the ADA was restricted to those with permanent injuries. In any case, goodbye to the DL and welcome the “Injured.”

Most of my readers have hearing loss. I’d love to hear your comments about terms and comments that offend you.

For more about hearing health, my book “SMART HEARING.” will tell you everything I know about hearing loss, hearing aids, and hearing health. Available online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or NOOK.

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