#HLAA.

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

Katherine Bouton #HLAA., Captions for hearing loss, CART captioning, stigma of 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.

What the ADA Means to Me

Katherine Bouton #HLAA., Americans with Disabilities Act (ADA), CART captioning, Hearing Loss Association of America

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.

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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.

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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

Katherine Bouton #HLAA., Heroes With Hearing Loss, Veterans 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.

 

 

 

 

Communicating in the Age of Covid: An Unexpected Benefit

Katherine Bouton #HLAA., Captions for hearing loss, CART captioning, HLAA Webinars, speechreading

There aren’t many bright spots when it comes to Covid 19. The death toll is enormous, the financial impact is potentially catastrophic, the fear of what lies ahead can be overwhelming. Still, for many with hearing loss, this period offers an insight into what it’s like to have equal access to spoken communication.

Many of us “manage” our hearing loss as best we can, through hearing aids and cochlear implants, through assistive listening devices, through speech reading and attention to communication strategies. I have a cochlear implant and a hearing aid. As grateful as I am for their superior technology, they’re not enough for me to participate fully in the hearing world. I employ these various devices and strategies with somewhat limited success.

KB celebrity. MiguelEdwards-48
Giving a reading in Seattle. Behind me you can see CART captions projected on a screen.

But in the age of Covid, the playing field has been leveled. It is often said that we hear with our brains. It’s equally true that we hear with our eyes.

As an advocate for people with hearing loss, I attend a lot of meetings. Most have to do with disability access and most offer live CART captions as well as accommodations for other disabilities. I’m able to keep up fairly well, although the effort of reading captions during an in-person meeting gets exhausting.

These days, however, all our meetings are virtual, and many of them are captioned. See below for instructions for getting captions.  With a Zoom meeting or Google Meet or any other captioned forum, an extra element is added that makes all the difference for me. These apps allow the speaker’s face to be isolated on the screen. (Click on the icon on the upper right of the app’s screen and then choose “Speaker View.”) That means that in addition to hearing the voice and reading the captions it’s very easy to read lips as well.

A good CART captioner makes the captions seem to synchronize with the spoken word. With my ears alone (plus hearing aid and cochlear implant) I miss a lot. With CART captions, the speaker’s voice actually sounds clearer and easier to understand. Am I hearing the words or am I reading them? I often can’t tell.

Add the visual element of the speaker facing you on the screen, and you’ve got triple input. Researchers call this multiple the McGurk effect, named after one of the British scientists who discovered in the 1970s that people comprehend speech better if they hear it in multiple ways. The scientists called it “hearing lips and seeing voices.” That’s why we need to see the speaker’s face clearly. A friend of mine likes to say, “Don’t speak till you see the whites of my eyes.” That is, she needs to see your lips in order to hear your voice. Adding captions to eyes and ears is an important third element. In a live gathering, adding hearing assistance in the form of a hearing loop is another way of improving the hearing experience through multiple inputs.

FaceTime also turns out to be an invaluable tool, although it doesn’t use captions. I always thought FaceTime was basically for fun, for talking to your grandkids or your boyfriend. But the McGurk effect applies here too. FaceTime isolates the speaker’s face close up.  This vastly enhances the ability to speech read. So, just as with good CART captioning, if I’m on a FaceTime call, I’m not sure if I’m hearing the speaker or reading lips. The input from eyes and ears are inextricably entwined.

In this time of social distancing, masks, self-quarantine, living apart from one another – we may feel isolated. I did at first, and I wrote about it in my column Coronavirus Concerns for People with Hearing Loss. It’s not just the disease. (As we learned more, I updated that column: I Take It All Back.)

But as I’ve become more comfortable with technology, everything’s changed. Eyes, ears and brain working in sync make me feel more connected than ever.

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To access Zoom captions: The person who initiates the meeting can either hire a CART operator to provide live captioning or can offer automatic voice recognition captions (which are generally less accurate). You, the guest at the meeting, click on “Closed Captions” on the very bottom of the Zoom screen. The captions will run just above that. You can adjust the caption size by clicking on CC and scrolling down. Sometimes “chat” interferes with the captions. If that’s happening, click on “chat” and the box with chat messages will appear on the right. You can move your whole screen to the right to get them out of sight. I know this sounds complicated but once you try it, it gets easier.

For more on the kinds of technology that are useful for people with hearing loss, especially now, the websites of both the Hearing Loss Association of America and the Center for Hearing and Communication offer good tutorials, including webinars.

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For more about living with hearing loss, read my books, available at Amazon.com and maybe at your favorite bookstore or library. If they’re not there, ask for them.

Here’s a link to my most recent book: Smart Hearing: Strategies, Skills and Resources for Living Better with Hearing Loss. 

 

 

 

 

 

 

 

 

 

 

Coronavirus Got You Stuck at Home? It’s a Good Time to Improve Your Hearing.

Katherine Bouton #HLAA., auditory rehabilitation, Healthy Hearing

Social Isolation can get awfully boring. Many of us find ourselves with not much to do except anxiously watch TV. Here’s a suggestion: make the most of house arrest by tackling one the online auditory rehabilitation programs. virus-4835736_1920-1

Working on hearing better during this period has an added benefit. Since you are probably isolated and not talking to many people, it can help keep the hearing parts of your brain limber.

Essentially, rehab is a way to train your brain to recognize the signals coming via a hearing aid or cochlear implant as specific sounds: rehab focuses on speech sounds primarily, but also helps you to distinguish the sound of banging the lid on a trash can from the bark of a dog or a human shout. Here’s a good explanation from the HLAA website.)

Most of the online programs offer targeted training, like listening to music, as well as basic training that exposes the listener to speech in noise, gradually increasing the ratio of noise to speech. Training can teach you how to focus on one speaker when others are talking, how to retrieve the one word in a sentence you may have missed, how to improve speech-reading, and other general strategies for maximizing your hearing. These are all similar to clinician-based programs, but they are done at home.

After training, scientists can actually see differences in the way the brain responds to trained and untrained sounds, according to Kelly Tremblay, an audiologist and auditory neuroscientist, formerly on the faculty of the University of Washington and a member of the Board of Directors of the Hearing Loss Association of America. In her research, Dr. Tremblay has shown that it doesn’t really matter what specific type of training you do. There is no one-size-fits-all. Even passively listening to sound changes brain activity, including listening to recorded books.

Formal hearing rehabilitation programs are scarce. Fortunately, hearing rehab can be done at home on your own. Quite a few programs can be found online. Most are designed for recipients of cochlear implants, but they can also be useful for new and longtime hearing aid users.

One place to start is with the websites of the three companies licensed in the United States to provide cochlear implants. These programs are free: The Listening Room (Advanced Bionics), Soundscape (Med-El),  The Communication Corner (Cochlear).

Programs independent of the cochlear implant companies include Neurotone’s online LACE (Listening and Communication Enhancement) Listening Program, which was developed by two UCSF audiologists. LACE is available in three increasingly sophisticated levels, with programs for both PC and Mac, as well as DVD. The cost for the program varies but is generally less than $100.

Read My Quips (or RMQ ) is a kind of crossword puzzle. A man and a woman alternately recite lines that take an unexpected twist at the end. You listen as many times as necessary to fill in the crossword blanks. The idea is to be able to understand in louder and louder background noise. An article on the Starkey hearing-aid site is a useful guide to rehab and RMQ: Training the Brain: Hearing Aids and RMQ. (I’m including RMQ in this post because I enjoyed using it in the past, but I have been unable to sign on to their website, so it may no longer be available.)

For further reading, The website for Cochlear Americas also includes an excellent article, Cochlear Implant Rehabilitation: It’s Not Just for Kids! by Donna L. Sorkin and Nancy Caleffe-Schenk.  The Hearing Loss Association of America also offers a guide to listening training programs.

You can also read my 2018 post Learn How to Listen, which discusses some of these same technologies and a few others.

My two previous posts suggested ways for the deaf and hard of hearing to stay in touch  during this period: The first was Coronavirus Concerns for People with Hearing Loss: It’s Not Just the Disease).  The second, written as the pandemic worsened and rules for social isolation quickly changed, was I Take It All Back!

If you’d like to get email notifications of new posts, click on “Follow” on the right.

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For more about living with hearing loss, read my books, available at Amazon.com and maybe at your favorite bookstore or library. If they’re not there, ask for them.

 

 

 

 

 

“Volume Control” Entertains, Educates and Will Probably Make You Mad at the Big Six

Katherine Bouton "David Owen, Volume Control", #HLAA., affordable hearing aids.

One of the great things about being a writer is that it lets you pursue your passions and still call it work. Like many people who encounter hearing loss when they don’t expect it, David Owen, author of more than a dozen books, wanted to know what had happened to his hearing and why. So he wrote a book. (So did I.)

9780593147009In “Volume Control: Hearing in a Deafening World,” Owen starts with the basics – how hearing works and what can go wrong – and allows himself an entertaining and informative meander into a world that many of us veterans of hearing loss will recognize. But what a story he tells along the way.

Some of it you may have learned in high-school physics: there’s no sound in space because sound waves need “stuff” to travel through and if there’s no stuff, there’s “nothing to vibrate, nothing to push and pull.” Of the cochlea, usually described as a spiraling shell, Owen offers the amusing comparison to a “Barbie-size serving of frozen custard.” A newborn’s inner ears are fully developed and the same size as an adult’s. The National Institutes of Health maintains a cadaver registry for ears, which provides specimens to hearing researchers all over the world. “If you don’t mind the thought of pathologists and medical students using a band saw to remove parts of your skull after you’re dead, you should consider donating yours.” Here’s a link to the registry if you want to donate.

Occasionally he left me scratching my head:  “Turn an ear trumpet around and you have a megaphone, not a silencer; how can that be?” That’s because an ear trumpet IS a megaphone, right? It amplifies sounds that go into your ear.

And really, don’t take as gospel Rush Limbaugh’s opinion about what things sound like with a cochlear implant: “It’s totally artificial,” Limbaugh says, “because in my memory of hearing there isn’t anything I ever remember hearing that sounds like the way I hear sounds now.” The closest he can get, Limbaugh says, is that it’s like “scratchy, static AM radio.” That’s not my cochlear-implant experience. I don’t hear perfectly with the implant, but what I do hear is very much like what I heard with my original ears. But never mind.

Many of the paths Owen goes down have to do with specific individuals with hearing loss. Their stories are varied and informative. Just as no two ears are alike – your hearing aid probably won’t work with my hearing – no two people’s experiences with hearing loss are alike.

Among his detours is the history of Chilmark, on Martha’s Vineyard, where so many people were Deaf that the hearing people also learned to sign. Alexander Graham Bell is revealed as an anti-signing, eugenicist crank. A 19th-century Portuguese king sat on a throne that acted as a hearing amplifier. “Supplicants knelt before the king and spoke into the open mouths of lion heads carved into the ends of the throne’s arms.” Sound was funneled through the chair arms and eventually to the king’s ears.

More serious, and quite damning, is his discussion of pricing by hearing-aid companies. In 2016, Starkey executives were indicted for what the U.S. attorney called “a massive and long running fraud scheme.” One executive settled before the trial began. Another was convicted on eight counts of fraud and sentenced to seven years in prison. A third was convicted on three counts and got two years. Appointed successor was the founder’s fourth wife’s son, who — among other indiscretions — used company funds to build a chicken coop and a skating rink. The scandal was confined to Starkey, but as Owen notes, all the hearing aid companies will suffer “if potential customers conclude that, no matter whose products they decide to buy, they’re being ripped off. ”

One disillusioned Starkey employee, Diane Van Tasell, had long since left the company, in 2002, and went on to work with Andy Stabin, who as a graduate student developed a method that would allow consumers to program their own hearing aids. They were later joined by Kevin Franck, an audiologist with an MBA. (Franck is now a member of the board of the Hearing Loss Association of America, HLAA.) The result was Ear Machine, which later became the Bose product called “Hearphones,” self-adjustable high-quality headphones that are hearing aids in everything but FDA-approved name. Owen describes his tryout with Hearphones, in the noisiest restaurant he could find, and although they’re not for people with severe hearing loss, they do sound excellent.

Why didn’t the hearing aid companies embrace Stabin and Van Tasell’s self-adjusting technology? Kevin Franck was their ambassador to the Big Six. His first contact was always with the engineers at the companies, who seemed excited about the technology. Then he’d visit with the business side. “We like this, but we don’t want to anger our customers,” they would tell Franck. It took him a while to figure out that the hearing aid companies’ “customers” were not those who wear hearing aids. “They were talking about audiologists.” When asked if they weren’t interested in the new markets a self-adjusting hearing aid would create, Van Tasell says, they would answer no. “Frankly,” they told her, “they were making enough money as it was.”

And that’s one reason the average cost of a hearing aid in the United States is $2400.

2020 is the year that FDA-approved hearing aids come on the market, which may help bring the cost of all hearing aids down. As Owen says, “There is no better time in all of human history to be a person with hearing loss.”

That’s good, because, as he also writes, “Our ability to deafen ourselves with ordinary daily activities has never been greater than it is now.”

For more about living with hearing loss, read my books, available at Amazon.com and maybe at your favorite bookstore or library. If it’s not there, ask for it!

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The Talkies

Katherine Bouton #HLAA., Captions for hearing loss, Movie Captions

For the first time in as long as I can remember, I’ve actually seen – and heard – many of this year’s Oscar-nominated movies. Including the ones in English.

food snack popcorn movie theater
Photo by Pixabay on Pexels.com

What made this possible? The oft-deplored trend to streaming video.

When the Oscar nominations came out earlier this week, the news media focused on the showdown between “old and new Hollywood,” as the New York Times put it, with new Hollywood producer Netflix getting 24 nominations, more than any other studio.

Nobody wants movie theaters to go away. There’s nothing like immersing yourself in the big screen. But for people with hearing loss that immersion may be a visual pleasure but it’s not always an aural one.

Thanks primarily to streaming services (and one extraordinary theater), I’ve seen five of this year’s nine best-picture nominees. “The Irishman” streamed on Netflix at the same time that it played in selected theaters. It’s a long movie and my husband and I broke it up over three nights. “Marriage Story” was also a Netflix production. “Once Upon a Time in Hollywood” was available for $3.99 on Amazon Prime and is available on other streaming sites. I saw “Parasite” in a theater, but it’s in Korean, so it was captioned. It is now streaming on various outlets including Amazon, iTunes and Hulu. “Little Women,” a Sony Pictures (old Hollywood) production, showed at New York’s Landmark at West 57, which not only has hearing loops but excellent captioning devices that actually fit into the cup holders. I didn’t see “1917″ or “Joker” but the latter is available on iTunes, Amazon and other sites. “Ford v Ferrari” and “JoJo Rabbit” are not yet available on your home screen. Not nominated but a favorite in our house was “The Two Popes,” another Netflix production. The Times ran a good summary of where to stream different movies.

In our house, the TV is always set to captions, so i don’t need to do anything to hear these streaming videos with the help of captions across the bottom of the screen.

Movie chains and many independents provide caption devices, as I’ve written before, most recently in “Movie-Goer’s Lament.” But they can be tricky and are prone to error. Sometimes they are synced to the wrong movie. Sometimes they just don’t work once you get them set up. Sometimes there aren’t enough devices to go around. Lots of us with hearing loss would like to see open-captioned movies, with subtitles similar to those you’d see on a foreign film. A pilot program in Washington D.C. has been offering that option at selected performances. It faces a lot of opposition. One D.C. legislator commented, “People don’t like to go to movies with captions, period.”

So thank you Netflix and Amazon Prime, among others, for making movies accessible to the deaf and hard of hearing. One additional benefit of watching a movie on Amazon Prime is the ability to create an Amazon Smile account, which donates a small portion of every purchase to the charity of your choice. Mine is the Hearing Loss Association of America. So I can do good while having fun.

 

For more about living with hearing loss, read my books, available at Amazon.com and maybe at your favorite bookstore or library. If it’s not there, ask for it!

Smart Hearing Cover final

 

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Moviegoer’s Lament

Katherine Bouton #HLAA., Captions for hearing loss, Movie Captions

Last week, the Washington Post ran an article about a movement to make open-captioned movie screenings more widely available to the deaf and hard of hearing. Open captions in movies generally run across the bottom of the screen, the same as subtitles you see in a foreign movie.

food snack popcorn movie theater
Photo by Pixabay on Pexels.com

The Post’s article, by Michael O’Sullivan, discussed a bill sponsored in the Washington DC City Council. The “Open Movie Captioning Requirement Act of 2018” would require DC theaters to provide open-captioned movies at hours of the day when people generally go to movies (i.e not the midnight screening). A pilot program started last summer and will run through the year.

Sounds good. But Erik Nordlof, the founder of the open-captioning advocacy group DC Deaf Moviegoers, says that during the first four weeks of the program only 40 percent of open-caption screenings were held on weekends, and weekday screenings were scheduled at very early or very late times. (The spokesperson for the National Organization of Theatre Owners disputed that, saying the majority of screenings were held at convenient times.) Although the pilot program appears to be a plus for deaf and hard of hearing moviegoers, Nordlof said, “it is ultimately a way to delay passage of legislation.” Since the majority of screenings were not available to most deaf and hard of hearing moviegoers the numbers will suggest there’s not a need for OC screenings.

Meanwhile, many theaters now provide closed-captioning devices, either a small screen on a gooseneck device that fits in a cupholder or glasses with the captions at the top. We — the deaf and hard of hearing — are grateful for the closed-captioning devices, cumbersome and breakdown-prone as they are, and wish that all theaters would provide them. But they have to be properly maintained if they’re going to do us any good.

Right after I read the Post article, I got an email from a friend about her previous day’s movie-going experience:  She got her device and set it up in her cupholder. When the movie began, it was the wrong movie. She took the device back to the concierge desk and they reprogrammed it. She took it back to her seat and it started up and then shut down. “Went back to desk…they gave me another device,” she wrote…. “Watched the movie until about 20 minutes till the end. Device started flashing about low battery and shut down. Went to desk… no more devices. Missed the end of the movie.” The theater offered her free passes to another screening. “I’ll never use up my free passes because there’s always a problem and i can’t watch. Ugh.”

Readers if you have consistent success (or failure) with CC-devices at movie theaters, let us know in the comment section. Many people prefer Regal theater chain’s captioning glasses.  I haven’t heard as many complaints about those. Do readers use captions at other movie chains? How about at independent theaters?

A comment made by a DC city council member, Jack Evans, was an indication of the opposition OC advocates face: “People don’t like to go to movies with captions, period.” People? What people? Obviously the council member, but others?

The Post must have gotten a clamor of complaints because within hours it published a “clarification”: “Since making the comment…. council member Jack Evans has subsequently declared his support for the Open Movie Captioning Requirement Act.” He even “subsequently” declared his “full support” for the bill.  A lot of subsequent thoughts.

Congratulations to those to spoke up, and to the Post for its “clarification.”

For more about living with hearing loss, read my books, available at Amazon.com and maybe at your favorite bookstore or library. If it’s not there, ask for it!

New Hearing Aid, New Life

hearing aid costs, Hearing Aids, Telecoil

I haven’t written much recently, but that’s because thanks to technology — apps and equipment — I’ve been busy doing things.

It started with a new hearing aid. My top-of-the-line Phonak, which had bumped my word recognition up considerably when I got it, gradually stopped working well for me. I replaced it with the then brand-new Phonak Link, which paired wirelessly with my Advanced Bionics cochlear implant. That meant that if I was listening to a podcast on my iPhone, for instance, the sound was going to both ears. I still had to use a streamer, an intermediary device that I wore around my neck on a loop, but I was hearing with both ears. Binaural hearing helps with speech discrimination and it was a wonder to hear so well with both ears after so long. After another year or two went by, however, that hearing aid no longer sufficed.

My audiologist agreed that I was probably at the end of the line with hearing aids, and I began researching a second cochlear implant. I passed the evaluation with flying colors (which means that I failed spectacularly: my hearing in that ear was easily bad enough to qualify for a new implant). But I’ve always heard primarily through my better ear — the hearing-aid ear — and I was reluctant to give up on a hearing aid as long as I got some benefit from from it.

My audiologist suggested I try a different brand of hearing aid. What works for one user is not necessarily good for someone else, and a brand that has worked for an individual in the past may not be as beneficial in the present. In my hearing-aid-wearing life I’ve worn primarily Widex and Phonak. This time I tried the Oticon Opn, a made-for-iPhone hearing aid that had the benefit of channeling anything that came into the phone (calls, podcasts, music, soundtracks on videos) directly into my hearing aid. (The one drawback was that I was back to single-sided hearing when using the phone.)

It was not only fun to have direct access to the phone without the need for a streamer but the new hearing aid also proved to be surprisingly better for me in many conversational situations. Friends and even acquaintances remarked on how well I seemed to be hearing. I was much more confident in social situations and so went out more. When I went for a hearing test recently, my hearing in that ear had actually improved.

Equally beneficial was the lapel mic I bought as an accessory —  as well as the introduction of a couple of new apps that came out around the same time. I’ll write about both next week.

You might be thinking that I’ve bought an awful lot of hearing aids recently. The time frame is not quite as short as it sounds, but yes, keeping up with hearing-aid technology is expensive. That’s why assistive devices like an FM receiver, a lapel mic, and the Roger Pen are useful. It’s also why having a telecoil in your hearing aid is essential. Many of these assistive devices work via the telecoil, and they’re much less expensive than a new hearing aid. If your hearing aid doesn’t have a telecoil, ask your audiologist to put one in. It’s a tiny device with a big impact.

 

For more about living with hearing loss, read my books, available at Amazon.com and Barnes and Noble, and maybe at your favorite bookstore or library. If it’s not there, ask for it!

Smart Hearing Cover final

 

shoutingwonthelp

 

 

 

 

Would You Cure Your Hearing Loss?

Healthy Hearing

Would you cure your hearing loss?

At the moment, that’s a hypothetical question. A cure for hearing loss does not exist. But as Dr. Tom Friedman of the National Institutes of Health told an audience at the Hearing Loss Association of America’s annual convention in June, a cure for at least one type of hearing loss may be around the corner.

light sunset people water
Photo by Negative Space on Pexels.com

Genetic, or hereditary, hearing loss is responsible for about 60 percent of hearing loss present at birth or developing in early childhood. It is also responsible for some adult-onset hearing loss, either on its own or in combination with exposure to noise or other toxins, including some medications like streptomycin or aminoglycoside antibiotics.

Hereditary hearing loss is caused by one or more mutations on a specific gene or genes. As of May 2019, scientists have identified 129 different genes causally associated with hearing loss. (“Causally” is the important word here.) Others are still being investigated. Gene sequencing can show which specific genes carry a mutation.

Hela Azaiez, PhD at the University of Iowa, who also spoke, noted that there are over 7000 possible mutations in those genes. She also said that an expert can sometimes predict which gene is responsible for the loss by the pattern on an audiogram. The more a person knows about the pattern of loss in the family, the easier it is to find the defective genes that are causing the loss, so a large family tree is helpful.

Autosomal recessive genes are the cause of hearing loss in 59 percent of cases. When the gene is recessive, the effect — in this case hearing loss — may skip generations and a pattern may not be apparent. Thirty-six percent of the genes that cause hearing loss are autosomal dominant, which means they always cause hearing loss. That leaves five percent, of which four percent are linked on the x chromosome and 1 percent in mitrochondrial DNA.

Two-thirds of those with hereditary hearing loss have no other related symptoms. But the remaining third have what is called syndromic deafness, with symptoms in addition to hearing loss. These include Usher syndrome (the disorder that Rebecca Alexander, subject of my previous post, has), Alport syndrome, and Perrault syndrome.

The next step for researchers is developing a way to correct those mutations. Several laboratories are moving ahead quickly with research.

Dr. Friedman is chief of the Laboratory of Molecular Genetics at the National Institute on Deafness and Other Communication. Dr. Hela Azaiez focuses on autosomal dominant genes at the Molecular Otolaryngology and Renal Laboratory at the University of Iowa. In the afternoon Dr. Azaiez gave a workshop with former HLAA Executive Director Brenda Battat and her family, who have hereditary hearing loss. Brenda Battat wrote about her family’s genetic search in an article for the January-February issue of Hearing Life Magazine called “Caught Up in a Whirlwind of Genetic Hearing Loss . They have been working with Dr. Azaiez.

To return to the question in my title: Would You Cure Your Hearing Loss? Many in the culturally Deaf community would answer with an emphatic No. Hearing loss/deafness/sign language are what makes them a community. As for me, with many years of hearing loss behind me, I would also probably say no, because the speech pathways in my brain are attuned to the way I hear now with a hearing aid and a cochlear implant.

But there are good reasons for determining the cause of hereditary hearing loss even if you don’t plan to treat it. Families may decide to correct the mutation in future generations. If it is too late to correct in younger family members, or if the family does not want to correct it, finding out what the mutation is and which family members have it allows them to plan ahead for future health care and other decisions.

The research symposium at Convention is always fascinating. This year’s panel included other researchers and much more information than I have room for here. Don’t miss next year’s symposium at the HLAA Convention in New Orleans.

For more about living with hearing loss, read my books, available at Amazon.com and Barnes and Noble, and maybe at your favorite bookstore or library. If it’s not there, ask for it!

Smart Hearing Cover final

 

 

 

 

 

 

 

 

 

 

 

Resilience

#HLAA., Cochlear Implants, Hearing Loss Association of America, Usher Syndrome

Whenever I am with a group of people with hearing loss, as I was last week at the annual convention of the Hearing Loss Association of America, I am impressed by the hurdles so many have overcome. Sudden or severe hearing loss is an ever-present challenge all on its own. So many at Convention, however, also have complicating factors: vision loss or blindness, tinnitus, vertigo or dizziness. Many have hearing dogs to assist them, some use motorized wheelchairs. All of them, if they have made it to Convention, also have strength and resilience. They wouldn’t be there unless they did. Many also have another crucial asset: a sense of humor.images

This year’s keynote speaker was Rebecca Alexander, author of “Not Fade Away: A Memoir of Senses Lost and Found.” She has Usher Syndrome Type 3, which results in blindness and deafness. I first came upon Rebecca when I reviewed her book in the New York Times in February 2014. She is an inspiring speaker (with a sense of humor) and if you have a chance to hear her speak, don’t miss it. In the meantime, read her book. And soon you’ll be able to see the movie, starring Emily Blunt. Here’s a link to her website. 

Rebecca began to lose her vision at age 12. By the time she was 19, her deafness had been diagnosed. Her trials seem, in retrospect, Biblical. She developed a severe eating disorder. Her twin brother, Daniel, was diagnosed with bipolar disorder that was resistant to treatment. Her boyfriend got cancer. She had tinnitus, with auditory hallucinations: a woman screaming at night, a jackhammer.

In spite of all this — or maybe because of it — she was driven to succeed. As a teenager at summer camp, she set off at 3 a.m. for a five-mile swim across a lake. In her early 20s, (by then well into deafness and blindness) she trained for a weeklong AIDS-benefit bike ride from San Francisco to Los Angeles. She ran extreme-athlete events and taught spin classes. She swam from Alcatraz to shore. She climbed Mt. Kilimanjaro with her sister. She climbed the treacherous Inca Trail at Machu Picchu: “My lack of peripheral vision made it easy to block out the deadly fall that you could take on either side,” she dryly comments in the book.

She pushed herself professionally as well. She has a double M.A. from Columbia in psychology and public health and has a successful private psychotherapy practice. As one friend wrote in an interview about Rebecca, “I think she keeps going 100 miles an hour to not have to process it all.”

Maybe, but as Rebecca wrote in her memoir: “If there’s one thing you absolutely need with a disability like mine, it’s resilience. I’m not talking about strong will and zest for life, either — but pure physical resilience. When you are going blind and deaf you are basically an accident waiting to happen.”

And happen they did. Just before she left for college, she fell out of her second-story bedroom window, mistaking it in the dark — and a drunken stupor — for the door to the bathroom. She broke virtually every bone in her body in the 27-foot fall onto a flagstone terrace, except for her neck and her head. The accident — and her recovery, which left her with a limp — taught her “something integral to who I am today,” she writes, “the perseverance I would need every day of my life.”

Today she has some vision and can focus on a speaker well enough to read lips. She has two cochlear implants and hears well with them. The Rebecca of the 2014 book was an astonishing person, but I worried that it all might come crashing down on her. Seeing her strong and beautiful and telling her story at Convention was clear evidence that she has overcome adversity that most of us can barely imagine. But her audience too was made up of people who have overcome adversity that many of us can barely imagine.

As Rebecca says in her book, what choice is there? “People often tell me I’m an inspiration. I’m never sure what to say.” She short-changes herself. She is an inspiration, as are so many with disabilities.

 

This post is partly adapted from my review in The New York Times: “Young, Stricken and Determined to Fight.”

For more about living with hearing loss, read my books, available and Amazon.com and Barnes and Noble, and maybe at your favorite bookstore or library. Smart Hearing Cover final

 

 

 

 

 

 

Captions Wherever You Go

Captions for hearing loss, Healthy Hearing , ,

It’s rare that a new app or product comes on the hearing device market that seems revolutionary. But Google has come out with a voice to text app that is potentially game-changing for those of us with severe hearing loss.

Although I have an excellent hearing aid and a state of the art cochlear implant, I still have trouble understanding speech in a group or in a noisy environment. Existing voice to text apps like AVA and Dragon Dictation help in those situations, but Google Transcribe far out performs them.

Google Transcribe is a free app that is currently available only for Android devices. I’ve been using it for the past month or so and didn’t want to write about it till I understood the pros and cons.

There are cons, as a glance at the photo illustrates. It starts out fine and then deteriorates.Google Transcribe IMG_0495

This transcript was made during a discussion with three other people. Looking at the transcript now, a day after the conversation took place, the text seems pretty garbled. It seemed perfectly clear at the time, probably because I can also hear enough to provide context. My book club was discussing Geraldine Brooks’ novel “March,” which imagines Louisa May Alcott’s “Little Women” from the perspective of the father who goes off to the Civil War. “Marmion” in this text refers to Marmee. I’m not sure what the word “Reversible” was supposed to be, but the rest of it seems clear enough.

Using the device at my book club, the discussion at first appeared in Spanish. Google Transcribe is also a translation app and has dozens of languages to choose from. I must have clicked on Spanish by mistake.

If you have an Android phone, all you need to do is download the Google Transcribe app. If, like me, you are a loyal Apple user, you’re out of luck unless you buy an Android device. Fellow blogger Shari Eberts, who wrote about Google Transcribe a few weeks ago, suggested buying an inexpensive Android device and not registering for phone service.

I bought this device. Since I’m not an Android user it took me a few tries to figure how to turn it on and navigate around it. I should have had the sales person show me how it works. It’s a nice slim phone and it charges quickly. As long as it’s connected to WiFi, it gets Internet access. I recently used this phone for GalaPro (see earlier post), because the type is clearer and larger than that on my iPhone. It even has a nice camera.

Live Transcribe also provides live captioning for any video, including podcasts, Skype calls and others. You can read more about this on Hearingtracker.com in an article by David Copithorne.

Live Transcribe is an artificial-intelligence based technology, which means that it learns how to hear speech. Your own voice will quickly be the most accurate, because it’s the one the app is most often exposed to. Other speakers will also transcribe more or less accurately depending on background noise, how clearly the speaker articulates and so on. It may take longer for Live Transcribe to recognize and accurately translate heavily accented speech.

Copithorne also wrote about Google’s Project Euphonia, which learns to recognize diverse speech patterns, for instance speech impediments. In partnership with the ALS Therapy Development Institute, Google Transcribe’s algorithms will enable it to learn to follow the speech patterns of people with ALS.

I haven’t tried Google Transcribe yet in a restaurant but I have successfully used it in environments that were previously very difficult. One is at our HLAA New York City chapter monthly meeting. The presentations are looped and captions are provided by CART. But I’ve always found it difficult to hear people who want to talk to me before or after the program. I used it this past week and it changed the whole experience. I could actually understand what people were saying. (CART, at least for now, is a superior caption provider, but since you can’t take your CART provider with you most of the time, Google Transcribe is a good substitute.)

Last week Apple stores were holding workshops for people with disabilities to demonstrate ways that Apple products could be of help. I had asked for CART captioning for the workshop, but Apple was unable to provide it. The workshop was held in a typically loud Apple Store. Apple had provided a portable hearing loop, which helped. But the only way I followed the presentation was on my Android phone using Google Translate.

It seems like heresy to use an Android phone in an Apple Store, but the presenters were impressed. Let’s hope Apple follows Google’s lead in this promising new technology.

 

UPDATE, MONDAY May 27:

Android’s Live Transcribe will let you save transcriptions and show ‘sound events’.

Click to read the article.

 

 

 

 

 

 

Hearing Mom

Healthy Hearing

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

lipreading , , ,

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.

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Resilience

Katherine Bouton #HLAA., Cochlear Implants, Hearing Loss Association of America, Usher Syndrome

Whenever I am with a group of people with hearing loss, as I was last week at the annual convention of the Hearing Loss Association of America, I am impressed by the hurdles so many have overcome. Sudden or severe hearing loss is an ever-present challenge all on its own. So many at Convention, however, also have complicating factors: vision loss or blindness, tinnitus, vertigo or dizziness. Many have hearing dogs to assist them, some use motorized wheelchairs. All of them, if they have made it to Convention, also have strength and resilience. They wouldn’t be there unless they did. Many also have another crucial asset: a sense of humor.images

This year’s keynote speaker was Rebecca Alexander, author of “Not Fade Away: A Memoir of Senses Lost and Found.” She has Usher Syndrome Type 3, which results in blindness and deafness. I first came upon Rebecca when I reviewed her book in the New York Times in February 2014. She is an inspiring speaker (with a sense of humor) and if you have a chance to hear her speak, don’t miss it. In the meantime, read her book. And soon you’ll be able to see the movie, starring Emily Blunt. Here’s a link to her website. 

Rebecca began to lose her vision at age 12. By the time she was 19, her deafness had been diagnosed. Her trials seem, in retrospect, Biblical. She developed a severe eating disorder. Her twin brother, Daniel, was diagnosed with bipolar disorder that was resistant to treatment. Her boyfriend got cancer. She had tinnitus, with auditory hallucinations: a woman screaming at night, a jackhammer.

In spite of all this — or maybe because of it — she was driven to succeed. As a teenager at summer camp, she set off at 3 a.m. for a five-mile swim across a lake. In her early 20s, (by then well into deafness and blindness) she trained for a weeklong AIDS-benefit bike ride from San Francisco to Los Angeles. She ran extreme-athlete events and taught spin classes. She swam from Alcatraz to shore. She climbed Mt. Kilimanjaro with her sister. She climbed the treacherous Inca Trail at Machu Picchu: “My lack of peripheral vision made it easy to block out the deadly fall that you could take on either side,” she dryly comments in the book.

She pushed herself professionally as well. She has a double M.A. from Columbia in psychology and public health and has a successful private psychotherapy practice. As one friend wrote in an interview about Rebecca, “I think she keeps going 100 miles an hour to not have to process it all.”

Maybe, but as Rebecca wrote in her memoir: “If there’s one thing you absolutely need with a disability like mine, it’s resilience. I’m not talking about strong will and zest for life, either — but pure physical resilience. When you are going blind and deaf you are basically an accident waiting to happen.”

And happen they did. Just before she left for college, she fell out of her second-story bedroom window, mistaking it in the dark — and a drunken stupor — for the door to the bathroom. She broke virtually every bone in her body in the 27-foot fall onto a flagstone terrace, except for her neck and her head. The accident — and her recovery, which left her with a limp — taught her “something integral to who I am today,” she writes, “the perseverance I would need every day of my life.”

Today she has some vision and can focus on a speaker well enough to read lips. She has two cochlear implants and hears well with them. The Rebecca of the 2014 book was an astonishing person, but I worried that it all might come crashing down on her. Seeing her strong and beautiful and telling her story at Convention was clear evidence that she has overcome adversity that most of us can barely imagine. But her audience too was made up of people who have overcome adversity that many of us can barely imagine.

As Rebecca says in her book, what choice is there? “People often tell me I’m an inspiration. I’m never sure what to say.” She short-changes herself. She is an inspiration, as are so many with disabilities.

 

This post is partly adapted from my review in The New York Times: “Young, Stricken and Determined to Fight.”

For more about living with hearing loss, read my books, available and Amazon.com and Barnes and Noble, and maybe at your favorite bookstore or library. Smart Hearing Cover final

 

 

 

 

 

 

Answers to Questions About Hearing Health

Katherine Bouton #HLAA., cognitive decline, Hearing Aids, Mayo Clinic, tinnitus, TV captioning

black and white business career close up
Photo by Pixabay on Pexels.com

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.