Seeing Hearing Loss

This week I’m going to refer you to a post by my friend and colleague Shari Eberts:

A New Take on the Audiogram Designed by Someone with Hearing Loss.

Her post is about Jay Alan Zimmerman’s new way of measuring hearing. He calls it the Hearing Visualizer. Jay’s idea is brilliant, simple, and emphasizes the positive. It focuses on what you CAN hear. Not on what you CAN’T.

If you’d like to watch Jay’s captioned presentation (it’s short and very entertaining, as well as informative. … Click on the video and then click on “Watch This Video on YouTube.”

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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.

“Crip Camp”: When Disability Rights Became Civil Rights

Last July I wrote about the 30th anniversary of the Americans with Disabilities Act, signed into law by President George Bush in July 1990. I wrote about how dramatically it changed life for people with disabilities, and how fortunate I felt to be a beneficiary of this act. My post was called What the ADA Means to Me.  

Now a stunning documentary, Crip Camp: A Disability Revolution, charts the origins of the disability-rights movement, which culminated (but did not end) with the signing of the ADA.

The story begins in 1971 at Camp Jened, a summer camp in the Catskills for teenagers with disabilities. Many of them had severe disabilities, but the loose, free spirit of Camp Jened allowed them to act like teenagers – dancing, smoking pot, making out. Their exuberance is contagious. It also gave them a chance to discuss the experience of disability in its many forms.

The opening scene of the movie is a home video of a toddler, James LeBrecht, born with spina bifida, literally catapulting himself around his parents’ home, throwing himself up stairs, metaphorically swinging from the chandeliers. We next see him in 1971 at Camp Jened, wheeling himself with the same jubilance he had as a toddler. LeBrecht, who directed, produced, wrote and is a central character in the documentary, is just one of the activists who got their start at Camp Jened and went on to change the world.

Judith Heumann lost the use of her legs to polio when she was two. Even at camp, she was clearly a leader. She would later become a noted disability-rights activist and was named Special Advisor for International Disability Rights by President Obama. (Barack and Michelle Obama are executive producers of “Crip Camp.”) Denise Sherer Jacobson, born with cerebral palsy, met her future husband, Neil Jacobson, who also had cerebral palsy, at Camp Jened. “Why do you have to marry a handicapped girl?” his parents asked when he told them he and Denise were getting married. “Why can’t you find a polio?” Heumann and the Jacobsons, as well as James LeBrecht, the force behind this film, are just a few of those whose independence and spirit were fostered by Camp Jened.

In 1977, Judith Heumann led a groundbreaking protest in San Francisco, called the Section 504 sit-in. Disability activists occupied a federal building for almost a month, demanding greater accessibility for all. Their victory was euphoric, but very soon they realized it wasn’t enough.

“I’m tired of being thankful for accessible toilets,” Heumann says. “If I have to be thankful for an accessible bathroom, when am I ever gonna be equal in the community?”

Two years after the Section 504 sit-in, Judith Neumann led people with disabilities from all over the country to Washington D.C. to stage a protest at the Capitol. The footage of demonstrators pulling themselves up the Capitol steps, because there were no wheelchair ramps, made me gasp.

In a 2016 Ted talk, Heumann told some of the stories behind the protest, including her own. As a child who lost the use of her legs to polio, she was told by a school official that she could not go to school because she was a “fire hazard.” Don’t worry, the principal said, we’ll send someone to your home, which they did, for a total of two and a half hours a week. Judy was eventually allowed to go to school, but when she got to high school, not one New York City high school was accessible. Her friends carried her up the steps. After she got a degree in teaching, she easily passed the written and oral tests to apply for her teaching license. But then came the physical test. “How do you go to the bathroom?” an interviewer asked her.

In her Ted talk, Heumann reminds us that, 40 years on, there’s still work left to do. Denise and and Neil Jacobson are still married and still activists, whizzing around Oakland in their mobilized wheelchairs, Denise’s graying hair highlighted with purple. What an extraordinary group of people. The movie is nominated for an Academy Award for Best Documentary Feature. It’s now available on Netflix.

The fight for equality is not over. Last week, Edith Prentiss, a longtime advocate for people with disabilities, died in New York at age 69. A fierce activist, Edith seemed to be everywhere in her motorized wheelchair, making her voice heard – making all our voices heard. In the words of Victor Calise, New York City’s Commissioner for People with Disabilities, she was an advocate “for everyone and anyone, understanding that the disability rights movement was not just for people who use wheelchairs but for every person with every type of disability.”

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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.

The Return of Social Anxiety?

Tips for Post-Pandemic Life.

On the one-year anniversary of the World Health Organization’s declaration of Covid as a pandemic, we are beginning to see the light ahead. Vaccine numbers are soaring, restaurants are offering indoor dining, people are traveling. Pandemic “pods” are expanding to include more than the two or three friends or family that many have depended on for company. Soon enough, there will be weddings, awards ceremonies, even private parties. Are you ready?

I’m not. But I’m working on it.

Photo by Anna Shvets on Pexels.com

Re-entry anxiety is not just for people with hearing loss. There are dozens of Google entries discussing the phenomenon, some of them a little premature, like one back in August in Psychology Today, which suggested starting small and working with a re-entry buddy to help build confidence. Emma Warnock-Parkes, a clinical psychologist and researcher on social anxiety disorder at Oxford University, says this anxiety is perfectly normal: Quoted this week in the Guardian, she said, “We’ve all been social deprived this last year, and when you haven’t done something for a while, it can be a bit strange going back into it.” Don’t avoid social situations, though, she advises: “Avoidance incubates anxiety.”

But my social anxiety– and yours too probably, if you’re reading this – is compounded by my hearing loss. Even one-on-one conversation in a relatively quiet space can be difficult, especially if people continue to wear masks. For most of us, conversation of any sort in a group or social setting is a challenge, and an even larger one when we can’t read lips.

So what can we do to prepare?

I like the idea of a re-entry buddy. Take your first steps with someone you trust. That could be another person with hearing loss, or it could be a hearing person. But whoever the buddy is, and however well they hear, focus on your own ability to communicate. Don’t let them do it for you. They’re just there for moral support.

Use your assistive devices. If you have a Roger Pen or one of the excellent clip-on or mini-mics made by other manufacturers, don’t be shy about using it. If we are all still wearing masks though, the assistive device may amplify sound but not clarity. Masks muffle sound even when amplified by a mini-mic. See-through masks help with speechreading but also muffle sound.

Use a captioning app. Otter.ai and Google Live Transcribe are both free to people with hearing loss and easy to use. They’re also accurate. Show it to the person you’re talking to and briefly explain. Usually, “I don’t hear very well and this captioning app helps me follow conversation,” is enough. I find that hearing people are often fascinated by the app and want to get it themselves for recording conversations. Readers, if you use other captioning apps, please let me know about them in the comments section.

Start small, preferably with people who also have hearing loss. Practicing with people who know exactly what you’re going through may give you confidence to try out communication with a group of hearing people.

If you’ve been comfortable in your pandemic cocoon, re-entry may be hard. But it’s important. Isolation can lead to depression, and both contribute to cognitive decline. Those of us with hearing loss are already at higher risk of early onset and more severe cognitive decline. It’s important that we take the steps available to us – like being part of a close social network – to offset this risk.

If you’re concerned about re-entry, please share your thoughts. If you have ideas about how to make it easier, please share them too.  

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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.

Stigma: Why It’s So Hard to Talk About Hearing Loss

This week the World Health Organization asked me to speak at the launch of their global Report on Hearing. The audience, from all over the world via Zoom, were primarily hearing professionals and public health experts whose work is about hearing loss but who don’t have it themselves. I was asked to speak about my hearing-loss experience.

I described myself as a deaf person who lives in a hearing world. I was well into adulthood when I lost my hearing, and it happened overnight. I was 30 and healthy, with no family history of hearing loss. One morning I woke up profoundly deaf in my left ear. I went to a doctor, who did many tests and found no explanation for the loss. I still had one ear that worked, however, so I ignored the loss. I didn’t get hearing aids. I never learned Sign language

Over the next 20 years the loss became bilateral and more severe. I had to acknowledge it – to myself anyway.  Telling others would come later. I finally got hearing aids when I was 52, 22 years after that first diagnosis. They worked well enough for a while. And when they no longer helped, after 10 years, I got a cochlear implant in my now nearly dead left ear. A stronger hearing aid helped in the better ear.

Why did it take me so long to get hearing aids? Why did it take me even longer to acknowledge the loss and ask for accommodations that would have helped me? I’m not alone in this delay. It takes people an average of 7 years from the time of diagnosis to treatment.

The answer is stigma. Stigma ranges from deep-seated fear and misunderstanding of deafness in some societies to an association of hearing loss with aging, and with cognitive decline and dementia.

The stigma of hearing loss has a long history, dating back to pre-Christian Hebrew law, which prohibited the deaf from participating in the rituals of the temple. Aristotle declared the deaf “incapable of reason,” and thus ineligible for citizenship. Jesus cast out the “deaf and dumb” spirit that possessed a child, and until quite recently some fundamentalist Christians cited that passage associating deafness with possession by the devil. Superstitions are still powerful in many societies.

The stigma of hearing loss is pervasive and hugely damaging.

Hearing loss is universally dismissed as a condition of aging. Millions of people simply retreat into isolation rather than take steps that would allow them to continue to be active members of society. That isolation leads to depression, depression contributes to dementia. A life lost because of the stigma of seeming old and useless.

Acknowledging hearing loss  is not easy. Coming to terms with deafness can take a long time. Hearing-health professionals need to understand that, and to help their patients understand. Professionals and patients also need to understand that although hearing aids work well for many, they are not enough for people with severe loss. We need additional devices and accommodations. Cochlear implants are miracles, but they are not a magic bullet. It takes dedicated hard work to learn to hear again with a cochlear implant.

Despite my hearing aid and my cochlear implant, the best technologies available, I still couldn’t hear. I lost my job, a job I loved. I could no longer function professionally.

But stigma was at work here too. My employer would have found another job for me, one that didn’t require hearing well, and would have provided accommodations like a captioned phone. I was too proud to acknowledge my loss, too ashamed to accept a job that would have been an acknowledgment of my disability. So I quit. I walked out. And that’s when grief hit me.

Grief is a totally appropriate response to losing your hearing. I grieved not just the loss of one of my senses, but the loss of my work, the loss of my self, the loss of my identity. I retreated into isolation and depression, combined with anger and continuing denial.

But I was lucky. I found a support group, almost by chance, the Hearing Loss Association of America, #HLAA.

I made friends through HLAA with people who had gone through what I had. We shared stories and strategies. We supported each other. We found a safe space together for our hearing loss.

I went on to write a book about my experience and to become an advocate for people with hearing loss. I found new friends, a new profession, a new life. I defied the stigma, and now I try to help others to do the same.

Hearing loss is preventable and it is treatable. That’s what the WHO report is saying.

Once we begin to treat it — with hearings aids, yes, for those with severe loss, but for the far more numerous cases of mild to moderate loss, with direct-to-consumer hearing devices – once we treat it, stigma will begin to fade away.

Everyone wears things in their ears these days. Apple sold 60 million Airpods in 2019. Airpods Pro include many of the same features as hearing aids and cost a fraction of hearing aids. Other less expensive hearing devices look like fancy bluetooth mics or expensive earbuds. Once enough people are wearing them, young people as well as old, stigma disappears.

It won’t be easy. But acknowledging the toll hearing loss takes on individuals and societies is a good start. Then we need to invest in prevention, education, and better technology.

We need to make hearing loss a thing of the past.

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Everyone’s experience of hearing loss is different. I invite readers to share their experience with hearing loss in the Comments section.

Here’s a link to the WHO Report. If you click on the video at the bottom you can see my talk and those of others.

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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.

On World Hearing Day, A Joyful Song and a Somber Accounting.

Today, March 3, is World Hearing Day. And today the World Health Organization released its first ever Report on World Hearing.

Awareness of hearing loss as a global problem has been slow in coming. That this is the first report on hearing loss from the prestigious WHO is evidence of that. One explanation for the delay is the invisibility of hearing loss – the vast number of people who hide it. And one explanation for the invisibility is the stigma of hearing loss.

And a powerful stigma it is. WHO predicts that if current trends go unchecked by 2050 (a date that used to seem so long ago and now seems perilously on the horizon) one in four people worldwide will have hearing loss.

That’s an alarming number, but perhaps even more alarming is that 430 million people right now have disabling hearing loss. “Disabling” — as I wrote in my previous post, quoting the language of the Americans with Disabilities Act — means that an impairment “substantially limits one or more major life activities.” Not all hearing loss is disabling. Disabling hearing loss does not include the signing Deaf, who have a perfectly good language, and are not disabled as long as society doesn’t throw obstacles in their way. “Accessibility alleviates disability,” as I wrote in a presentation recently. (I’m not sure I coined that phrase, but it’s a good one so I use it.)

Learn to hear better!

But the vast majority of those with hearing loss are not sign-language users, and in many of them, including me, the loss is a disability.

The report notes that 60 percent of hearing loss can be prevented. In children, prevention includes immunization, especially against rubella and meningitis, and better maternal and neonatal care. In adulthood, it means limiting exposure to noise and ototoxins. There are other causes of course, including heredity, which can be exacerbated by these.

Universal vaccination and screening, better maternal and prenatal health care – these things are expensive, right? In the short run, yes. But in the long run it is money well invested. The report calculates that governments can expect a return of nearly $16 (US) for every $1 invested.

WHO invited me to speak at their launch ceremony this morning. It was a wonderful event (except that it was held at 5 am EST). Sandile Majola and the Ndlovu Youth Choir of South Africa kicked it off – and woke me up — with a rousing performance sung and signed in a sunny outdoor setting. I was asked to talk about my own loss and what role stigma played in how I dealt with the loss.

As I wrote my talk, I realized that stigma has affected me in ways I’d not realized before. I’ll post a version of that talk separately. World Hearing Day celebrates hearing, but it also is an opportunity to remind ourselves that hearing is easy to lose and hard to get back. As individuals and as countries, we need to protect this precious resource.

Defining Disability

Do I have a disability?

It depends on when you ask.

If I am alone at home with no noise except my breathing and quiet tapping on the computer keyboard, and I’m wearing my hearing aid and cochlear implant, then No, I don’t. Or at least I don’t perceive the disability. If the phone rings and the captioning service works, then No, I don’t. If I join a Zoom meeting that’s captioned, No, I don’t. If I’m watching TV with captions, No, I don’t.

TV Captions

That doesn’t make me a person without a disability. It just makes me feel like one.

Under the ADA, there’s no question about my status. “An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.”

The accommodations I describe  – a quiet home, hearing aid and cochlear implant, captions on my phone, captioned Zoom meetings and TV – alleviate the hearing deficit to the point that I forget I have it. And that’s what we aim to do when we advocate for accommodations in the outside world.

These accommodations allow me to participate in the ADA’s “major life activities.” But not entirely, and this is why I am a person with a disability. With hearing loss as severe as mine, accommodations don’t cure or reverse the disability. They lessen the struggle. They mitigate it. But they don’t make it go away.

For those with less severe hearing loss, which is the vast majority of people who self-identify as having hearing difficulties, accommodations don’t just alleviate but may eliminate the disability. If you have mild to moderate hearing loss, you might have trouble hearing in a restaurant. Accommodations in a restaurant can be something as simple as a corner table, carpeting, acoustic tiles or other noise absorbers, tables spaced farther apart. We don’t think of them as accommodations but they are. They make a built environment compatible for people who might otherwise not be able to participate. In this case accommodations don’t just alleviate the disability, they may make it disappear.

Sometimes accommodations aggravate the disability. I’d put movie-theater cupholder captioning screens in this category. They are so awkward to use, and so often mistakenly programmed, that they simply remind me that I can’t hear the movie. If all movies had open captions along the bottom of the screen, that would be an accommodation that would allow me to forget my disability.

Do I have a disability? Yes.

Am I disabled? No, because accommodations allow me to function. Without accommodations I would be disabled – I AM disabled. But only temporarily.

The “people first” preference for disabilities is correct not only in the sense we usually use it – I am a person first, and my disability is a part of me. But it is also correct because this disability I have isn’t always disabling. So it shouldn’t define me.

I welcome comments on accommodations that make you forget you have a disability, as well as accommodations that just make it harder.

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For more about living with hearing loss, read my books at Amazon.com.Smart Hearing is a guide to everything about hearing loss. Shouting Won’t Help is my personal story of loss and renewal. Both are available in paperback and on Kindle. Available only at Amazon.com unless you can persuade your local bookstore to order one for you.

When Seeing is Hearing

Isolation isn’t conducive to writing about communication difficulties. Since communication difficulties are what this blog is about, I haven’t written much in recent months.

I’m getting along just fine with no one to talk to. I’m hearing well. Or at least I feel like I’m hearing well. But that’s because everything I hear – the television, the telephone, Zoom calls – is captioned. When I can see the words, I can also hear them.

That seeing enhances hearing is a well known phenomenon, which I’ve written about in the past. Researchers call it the McGurk effect, named after one of the British scientists who discovered in the 1970s that people comprehend speech better if they also see it. They called it “hearing lips and seeing voices.”

This is why good communication strategies are important. It’s why we need to make sure we can see a speaker in order to hear them. We all intuitively speech read. The speaker’s facial expressions contribute to our comprehension.  How the words are formed in the mouth and on the lips is also important, which is why we used to call it lipreading. Now we know that lipreading is augmented by facial expression and body language, and we call it speechreading.

I’m a good speechreader, but only if I can also hear what’s being said. If I hit the trifecta — hear the speaker, see the speaker, AND get captions — I hear perfectly! Fortunately for me, that’s often the case with virtual meetings and conversations.

There are times when captions fail me, however, especially with live TV. I like to watch the network news to catch up on the day. One network, my favorite, has terrible captioning. The captions routinely start stuttering, the same few words repeated over and over again while the speakers cluelessly move on. Eventually I give up and change the channel. Readers if you also have this experience, is it worse on a particular network? I’m reluctant to slam mine, but feel free chime in.

This network is presumably using ASR — Automatic Speech Recognition. Unfortunately the network’s system can’t even recognize the names of the network’s star correspondents. Far superior is CART captioning — Communication Access Real Time Translation. It would seem well worth the small investment in a good CART captioner. Networks, listen up! increase your viewership. The same problem exists, by the way, with live sports captioning.

Maybe I AM hearing better. Without the anxiety and stress of trying to hear and understand all day — trying to communicate — I’m more relaxed. These past few months, as bad as they’ve been, have for me included one benefit, a big benefit. I can hear.

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Here is a link for filing a complaint to the FCC. You will not be able to complain about a recurring problem, just one specific station/show on one specific date. So if you are trying to watch NBC Nightly News, for instance, you will have to choose one specific date and time to complain about.

A Question About Sound

If a tree falls and I’m not wearing my hearing aids, does it make a sound?

One morning last week I was sitting at the kitchen table drinking coffee when I noticed something odd out the window. We have a large, old, beautiful and very decrepit barn. From where I was sitting, a tree trunk seemed to be leaning on it. It’s a woodsy overgrown area, so at first I thought I just hadn’t noticed it before.

Later I went out to look more closely and saw that the tree trunk had pierced the barn roof, leaving a hole about six by eight feet, now filled with tree trunk. Not only that, as the tree man told me later (see photo), the trunk had snapped off, hit the sloping ground, and then flipped back up, like an Olympic pole vaulter. I’m sorry I missed it!

Downed tree, left, leans into barn.

But I’m more concerned that I didn’t hear it. It must have made a loud noise as the trunk cracked and fell and an even louder noise as it sank into the roof. It was a windless night, and quiet.

I have a dog who barks at people coming to the door and at stray raccoons and other creatures who venture too close to the house. But the cracking tree doesn’t seem to have phased him. Maybe because it was one (or two) short sharp sounds. That may be why I didn’t hear it either. I have some residual hearing, though, and it dismays me that I could miss something so dramatic.

But back to the question. It’s a play on the old philosophy trope, “If a tree falls in a forest and no one is there to hear it, does it make a sound?” An amusing essay in Medium by John Hydrisko attributes it (or the idea of it) to George Berkeley, an 18th century Irish philosopher whose belief was summed up in the phrase: esse est percipi (aut percipere); to be is to be perceived (or to perceive). For Berkeley, Hydrisko writes, if the tree is not perceived it doesn’t exist. “If you asked George Berkeley, ‘If a tree falls in a forest and no one is there to hear it? — he would probably cut you off, “What tree?’” No one there to perceive it. Thus it doesn’t exist.

The Oxford English dictionary defines “sound” as “Vibrations that travel through the air or another medium and can be heard when they reach a person’s or animal’s ear.” But if they reach the ear and are not heard, are they still sound?

Scientific American, back in the 18thcentury (thank you again John Hydrisko), summed it up: “Sound is vibration, transmitted to our senses through the mechanism of the ear, and recognized as sound only at our nerve centers. The falling of the tree or any other disturbance will produce vibration of the air. If there be no ears to hear, there will be no sound.”

Of course there were ears to hear: all the little critters in the forest have some form of hearing, and in many cases it’s far more acute than ours. So, If a tree falls and I’m not wearing my hearing aids, does it make a sound? Ask the deer and the raccoons and mice. The answer is yes.

Katherine Bouton is the author of “Shouting: Won’t Help: Why I and 50 Million Other Americans Can’t Hear You” and “Smart Hearing: Strategies, Skills and Resources for Living Better With Hearing Loss.” Both are available in paperback or as an ebook through Amazon.com

What the ADA Means to Me

30 years ago this week, George H. W. Bush signed the Americans with Disabilities Act, which had been passed by a bipartisan Congress. Change for people with visible disabilities came quickly. Curb cuts became the norm, and allowed people in wheelchairs to cross the street. Wheelchair ramps aided not just wheelchair users but people with strollers or walkers. Braille became standard on public signage. Every governor and mayor had an ASL interpreter at his or her side when speaking in public.

Less easily or quickly addressed was the invisible disability of hearing loss. It is thanks to Rocky Stone, the founder of the Hearing Loss Association of America (then called SHHH), that hearing loss was included in the list of disabilities covered. One essential accommodation — in my opinion the most important for people with hearing loss — was the development of CART captioning. This photo shows one of my early experiences with it, speaking to a hearing-loss group.

KB celebrity. MiguelEdwards-48
CART captioning.

On the 20th anniversary of the ADA, ten long years ago, I had recently quit my much loved job as an editor at The New York Times. I couldn’t hear well enough to manage the many meetings and phone calls and other requirements of the job. I could have asked to be transferred to a position which would not have required so much public and workplace interaction, but I was worn out from many years of trying to keep up. The obstacles seemed insurmountable. The technology was not very good.

Today, ten years later, the accommodations that would have made the workplace accessible to me exist, and I would have had the confidence and determination to ask for them and to use them.

I would have asked for CART captioning in all company-wide meetings. I would have asked for a conference room in our department to be looped, and for my department’s meetings to be held in that room. I would have asked for looping for the larger conference room, where Page One and other meetings were held. I would have asked for a captioned telephone. I would have used my own smart phone for calls, using the captioning app Innocaption+. I would have used speech to text captioning in smaller groups: Otter for the iPhone, Google Transcribe for an Android. I would have asked people – probably over and over and over again – to look at me when they speak, not to talk over each other, to repeat key phrases if I miss them or to paraphrase them.

Other benefits for people with hearing loss that stem from the passage of the ADA involve FCC requirements for cell phones and landlines to be compatible with hearing aids. Movies are captioned (usually via a device you ask for at the theater), television is captioned. The governor or mayor will include a CART captioner as well as the ASL interpreter for public events. Hearing loops allow people to hear in public spaces simply by changing the program on a hearing aid. This is really just a smidgen of the changes that have come about. Readers, please suggest others that have been meaningful to you.

In my term as president of the New York City chapter of HLAA, I was part of groups advocating for accommodations in the public and private spectrum. One of my proudest moments was the signing in 2016 of two bills by Mayor Bill De Blasio that advanced accommodations for people with disabilities. These in fact served people with hearing loss but also all New Yorkers, as many accommodations do. The first required all city agencies to have a disability-services facilitator on staff and to publicize the name of the person and contact information. The second required that meetings and other events must include information about accessibility on the announcement or invitation. (Prior to this bill, a person with hearing loss might go to an event that had been advertised as hearing accessible and find only an ASL interpreter.)

The picture shows some of the people who made those changes happen.

K, R, G, Helen and the Mayor 2015.03.14-ADA-Bill-Signing-Alatriste
Left to right, Katherine Bouton, HLAA member and advocate Ruth Bernstein, Co-sponsor of the bills City Council Member Helen Rosenthal, HLAA member and advocate Jerry Bergman, Mayor Bill De Blasio. (I can’t identify the  two men in the background.)

 

The following year the mayor signed a another bill, requiring installation of hearing loops in all new or renovated city buildings with a base cost of $1 million. And shortly after that, the historic landmarked City Council Chamber in City Hall was looped.

The fight for accommodations is in no way over, but it’s being waged. The pandemic has revealed the essential need for transparent masks in medical settings. Another of our chapter members, Toni Iacolucci, is working with New York City’s massive hospital system to make hearing accommodation available.

In 2016, at the New York Yankees’ annual Disability Awareness Night, our chapter received an award from the Mayor for our contributions to a more accessible New York.

yankee game copy
Left to right, Katherine with the citation, Toni Iacolucci, Deputy Commissioner for People with Disabilities Kleo King, Commissioner Victor Calise.

We have a long way to go in getting full accommodation for people with hearing loss. But the ADA gives us the legal means to continue our fight. Perhaps as important, the ADA has raised awareness of discrimination against people with disabilities and their rights for equal accommodation. Let’s hope by the 40th anniversary we won’t have to be working so hard to provide access to all people, no matter how severe their disability is, or how invisible it is. Thanks to HLAA for leading the way.

Heroes with Hearing Loss

This Memorial Day, there will be very few parades to celebrate our veterans. But it’s a good time to remind ourselves of the toll that war takes on hearing.

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Photo by Tim Mossholder on Pexels.com

When we think about the injuries our servicemen and -women endure, we focus on major life-changing injuries like Traumatic Brain Injury and Post-Traumatic Stress Disorder. We worry about suicide in veterans. We see veterans struggling to learn to walk again with prosthetic limbs or learning to hug a child using a prosthetic arm. These are all horrifying consequences of war and no one would minimize them.

But there is a war wound we don’t see, and for the most part don’t think about. Hearing loss and tinnitus are the two largest categories of disability in the military, and have been for some time.

These are not comparable injuries in terms of the scale of destruction, and they are not life-threatening. They are often secondary to TBI or other debilitating injuries. But they’re permanent. And long after a veteran has begun to recover from these other wounds physically and emotionally, he (or she) begins to realize the hearing loss or tinnitus is not going away.

Hearing loss is even more an invisible disability in the military than it is elsewhere, but it is intertwined with other injuries both physically and emotionally — “as a trigger, a constant reminder or an everyday frustration. It is a very unique and personal challenge for many veterans,” one veteran told an audience at the Hearing Loss Association of America‘s (HLAA) annual convention in 2014 in a presentation by Heroes with Hearing Loss, who speak to veterans’ groups and others about the impact of hearing loss and tinnitus. I wrote about their 2014 presentation in “An Invisible War Wound,” published on November 11th, 2014, Veterans’ Day. (This post is an adaptation.)

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HLAA was founded in 1979 by Rocky Stone, who also suffered service-related hearing loss. It continues to honor and offer resources for veterans, on both the national and chapter level. Donald Doherty, a retired Marine and Vietnam veteran, is a former Chair of the Board of Directors of HLAA. He lost his hearing as a result of gunfire and artillery noise during a 1965-66 tour in Vietnam and has worn hearing aids since June 1970.  During his tenure as board chair, he established a virtual veterans chapter of HLAA, which offers many services to veterans. Here’s a link to the HLAA page. 

Doherty offers another explanation for the invisibility of hearing loss among veterans. “Marines — and anyone in the armed forces — have been instilled with a sense of pride, the need to act independently, to do it yourself. It’s a sign of weakness if you reach out for help,” he said. Eventually, he said, you realize it’s affecting “not only yourself but everyone around you.” Heroes with Hearing Loss helps veterans accept help.  If you’d like to read more about the Heroes with Hearing Loss presentation at HLAA, here’s a link to my earlier post, The Noise of War.

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For more about living with hearing loss, read my books at Amazon.com.

Smart Hearing is a guide to everything about hearing loss. Shouting Won’t Help is my personal story of loss and renewal. Both are available in paperback and on Kindle. Available only at Amazon.com unless you can persuade your local bookstore to order one for you.