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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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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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

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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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Is it OK if I Leave Now?

Whether or not you are open about your hearing loss, there often comes a point at which you just can’t try to listen anymore.

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I’m very open about my hearing loss. At this point, in fact, my hearing loss practically defines me, since I write and speak about it. The other night at a dinner party in a restaurant, the woman sitting next to me said she’d heard I was some kind of disability guru. A slight distortion but I like it.

There were seven of us at dinner, the others were in couples, I was on my own and knew only the hosts. They had told me in advance who would be there, so I didn’t have to struggle with names. The specials were on a blackboard, so I knew what I was ordering. The restaurant was reasonably quiet. So far so good.

The woman on my right was a well-known feminist scholar and I was slightly intimidated. But she was funny and friendly and very interesting. She was on my good side so I heard her her well.

After a while it seemed only polite to turn to the people on our other sides. On my left, my bad ear, was a man who was also hard of hearing. His bad ear was facing my bad ear. By twisting and leaning in and trying not to fall into my dinner plate, I caught enough for a reasonably coherent discussion.

Towards the end of dinner, over dessert and coffee, the conversation got more general, and apparently more hilarious, as everyone was laughing. It’s fun to watch people laugh – at least for a while. As it got funnier and funnier. I got more and more tired and stressed.

Under other circumstances- – with closer friends, if I were not a guest – I might have excused myself. But I didn’t know these people well and everyone had been very generous in acknowledging my hearing loss and speaking clearly. Now they were just enjoying themselves, and it seemed wrong to interrupt and ask that I be included. In fact, at that point there was probably no way I could have been included as the restaurant had gotten busy and loud.

The alternative was to excuse myself and leave. But I knew that would break up the conversation and probably end the evening. So I didn’t. Instead I relied on that old standby – faking it. I think it was the right decision.

What would you have done?

 

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.

 

 

 

 

 

 

 

 

Holiday Gifts for the HOH

What’s an HOH? The acronym (pronounced ‘ho’) stands for Head of Household, House of Hades, Head Over Heels …. And Hard of Hearing.

This highly subjective list is for your favorite HOH, last definition. The books are some of my favorites, personal endorsements. The technology is randomly chosen. You may find a better or cheaper brand. Please share in the Comments section.

I’m not going to write about hearing aids, hearing assistive devices or PSAP’s (Personal Sound Amplification Products). Not that they aren’t great gifts: I know a man who gave his sister the hearing aids she couldn’t afford after he landed a new high-paying job.

Books

Here are some of my favorites, shamelessly starting with my own.

*Smart Hearing: Strategies, Skills and Resources for Living Better with Hearing Loss (2018). A primer for veterans of hearing loss as well as newbies – and for anyone who lives, loves or works with someone with hearing loss.

*Shouting Won’t Help (2013) Yup, also by me. A memoir of losing my hearing and — for a while, my sanity — as I tried to adjust to my new self. I did eventually find my way to acceptance, and I share that journey.

*Gael Hannan’s funny and wise The Way I Hear It (2018) is, like my books, a combination of memoir and advice from someone who’s been there.

*Deaf Sentence, (2009). David Lodge’s classic and hilarious portrait of a clueless professor of linguistics coming to terms with aging via his hearing loss.

*El Deafo (2014). Cece Bell’s graphic novel/memoir about a young girl with a great big hearing aid is meant for kids, but this adult loved it.

[These links are to Amazon but you can buy any of them — in paperback, e-book and in some cases other formats – at B&N.com or by asking your local bookstore to order them.]

 

Household Technology

*A sunrise alarm clock. There are lots of versions of this clock, which allows you to wake up to simulated sunrise (or a classic alarm). Wirecutter recommends the Philips Wake-Up Light HF 3520.

*TV Ears, an alternative to turning the set up to a volume that your next-door neighbor can hear. Williams Sound and Amazon both offer a variety of brands.

*A wireless strobe-light door chime. One of the more frustrating things about hearing loss is not being able to hear the doorbell. There are lots of brands, prices, and places to buy them.

*An ASL wall clock. Learn how to sign the numbers as well as what time it is. Available at Café Press as well as other retailers. 51CrF+bHS6L._SL500_

 

Protect Your Hearing

*Musicians earplugs. These allow you to hear what you want to while dampening loud sounds. Available at a wide range of prices, for professional musicians and anyone who loves music. Even if you don’t think it’s loud, it is.

*Noise-canceling earmuffs. Buy the kind made for yard work. They’re much cheaper than the $300 Bose, which is also excellent. Wear them to the stadium and they’ll protect your hearing and keep your ears warm.

 

Personal amplifiers.

*Bose Hearphones. These are $499, but people who use them say they are worth the price. Bose recommends them for “enhancing conversation.” Available at Bose, Best Buy and many other retailers.

*A Pocketalker. A simple and low-cost device for one-on-one conversation with someone with hearing loss. PocketTalker is the Williams Sound brand. Others are available.

Do something good for your favorite HOH and for HOH’s everywhere.

*HLAA Membership. Give your loved one a membership in the Hearing Loss Association of America, or make a donation in their name. You’ll be helping support HLAA’s mission of “information, education, support, and advocacy,” and introducing them to a world of people with hearing loss. “Hearing Life” magazine is a bi-monthly bonus.

 

Readers, what are your suggestions for HOH gifts you’d like to give or get?

 

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.