Moviegoer’s Lament

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

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!

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Would You Cure Your Hearing Loss?

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!

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Resilience

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

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

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

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

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

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

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

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

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

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

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

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

Photo courtesy of Katherine Bouton

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

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.

Theatre for All

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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For more about hearing health, my book “Smart Hearing.” will tell you everything I know about hearing loss, hearing aids, and hearing health. Smart Hearing_Cover_highres You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.

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Resilience

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

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.

 

 

 

 

 

I Have a Disability. How About You?

December 3rd (that’s today) is National Disability Day, a United Nations recognized event also known worldwide as the International Day of People with Disability.

National Disability Day promotes education about the needs of people with disabilities as well as compassion and understanding of the challenges they face.

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Some disabilities are visible at a glance. People dependent on wheelchairs for mobility may have different degrees of severity of physical impairment but if they need a wheelchair, for whatever reason, they are eligible for accommodations under the Americans with Disabilities Act.

Hearing loss, on the other hand, is not only invisible but not everyone with hearing loss is disabled. Mild hearing loss is not usually a disability. Severe to profound hearing loss is, and these people are entitled to accommodations under the ADA. But many who have severe and even disabling hearing loss refuse to acknowledge it, fearful of stigma and discrimination. In order to get accommodations under the ADA, you must acknowledge disability. Many are unwilling to take that step. That complicates advocacy for all of us with hearing loss.

Deputy Inspector Daniel Carione of the New York City Police Department put this eloquently in a talk he gave at a meeting of HLAA’s New York City Chapter last spring. Carione was a 22-year much-decorated veteran of the NYPD when he was forced to take early retirement in 2011. The reason? He wore hearing aids. He decided to fight the ruling. Before he had any legal ground to stand on, he told the audience, he had to make an important admission to himself.

“The Americans with Disabilities Act is not this heroic shield that falls from the sky and protects each and every person who may or may not be disabled,” he said. “You have to be disabled. That was very difficult for me to accept.”

Dan Carione does not look disabled. He was—and is—a powerful physical and intellectual presence. To use the word disabled about himself defied the visible reality. But his attorney knew that admitting disability was essential. “One of the first things she taught me was to use the word disabled. It’s counter-intuitive. It hit me in the head like a dart because I didn’t want to use the word disabled. But if you’re not disabled, the ADA can’t protect you.”

As a hidden disability, and one with stigma attached, hearing loss is often not acknowledged. This harms not only those who refuse to acknowledge it but it also makes getting accommodations for the rest of us even harder. If a movie theater thinks you’re the only person in the audience who needs captions, that makes it easy to say it’s an expense they can’t afford. I go to a movie theater in the small town where I live part time. The audience is preponderantly gray. Statistics tell us that many have hearing loss that is severe if not disabling. Half of those in the United States 75 and over have disabling hearing loss, according to the NIDCD. But you’d never know it because you can’t see it and they aren’t talking about it.

So on this National Disability Day, if you have hearing loss and can’t hear a speaker at a lecture or at your place of worship, can’t hear at a movie, can’t hear that airline announcement, speak up. Ask for a hearing assistive device. Ask for captions. Ask for accommodations. Speak up for yourself, and you will be speaking up for all of us.

 

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

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.

 

 

 

 

 

“Affordable” Hearing Aids

There’s a lot of talk about “affordable” hearing aids, much of it in anticipation of the Food and Drug Administration’s final approval of an over-the- counter hearing aid. We don’t know the specifics of the future OTC hearing aid but some have speculated that the cost will probably be around $1000.

Comparatively speaking, that is affordable. The cost of high-end hearing aids is approaching $4000 (for one). $3000 is not unusual. Costco’s least expensive hearing aid is $999.  There are less expensive devices, many available online, some of which use the term “hearing aid”, but buyer beware. For some people, they may work well out of the box. Others may end up with hearing aids that aren’t really right for them. As for hearing-aid like devices, PSAP’s or hearables, for some they will be adequate but for others not so good. And if they are too cheap, a 2016 Consumer Reports survey found, they can actually damage your hearing.

But these low-cost alternatives are still a major expense for many Americans, especially older Americans.  Earlier this year a Federal Reserve Board survey found that 40 percent of Americans could not cover a $400 emergency expense without selling something or borrowing.  A $1000 affordable hearing aid is not “affordable” for 40 percent of our population.

Medicare does not cover hearing aids. Some Medicare supplement programs do, as do some other insurance policies. But that 40 percent who can’t find a quick $400 for an emergency probably do not have this level of insurance. The V.A. also provides hearing aids to veterans with service-related hearing loss.

For many, Medicaid is the only solution. Medicaid covers hearing aids for adults in 28 states, including New York State where I live. For a complete list of states and of eligibility requirements for hearing aids, based on the severity of the loss, see this recent article in Health Affairs. Coverage varies widely from state to state, as does coverage for associated services like hearing-aid batteries.

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In this map, the dark red states have the best Medicaid hearing aid coverage. The pink states have no hearing aid coverage. The other states fall in between.

As the Health Affairs article concludes: older Americans “in states lacking comprehensive hearing health care coverage have few ways to access hearing aids or the professional services associated with hearing loss and hearing aid use.” As we know, untreated hearing loss is significantly related to other adverse health outcomes, especially in the elderly.

The Health Affairs study also found that over one-fourth of adults skipped necessary medical care in 2017 because they were unable to afford the cost.

So when we talk about “affordable” hearing aids, let’s remember that that is a relative term.

 

For more about hearing health, read my new book, which will tell you everything I know about hearing loss, hearing aids, and hearing health!Smart Hearing Cover final

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.

 

 

 

 

 

 

 

Will Your Health Insurance Cover Hearing Aids?

The second installment of Hearing Tracker’s survey of 2000 hearing aid users has just been published, and it includes some interesting facts and figures.

Paying for Hearing Aids with Medical Insurance, the new Hearing Tracker report,  is based on a survey of 2000 hearing aid users conducted earlier this year by Hearing Tracker and its founder, Abram Bailey.

The news is that 25 percent of hearing aid buyers received some insurance reimbursement. The coverage ranged from $1226 (partial coverage) to $2131 (full coverage). Bailey warned readers that these figures are based on recollection and that people should go to their provider to get an exact figure.

There are two ways of looking at the fact that 25% of hearing-aid users received help in paying for hearing aids. The good news is that this figure is up from 13% in 2008. The glass is half full: the number of people with insurance has doubled in the past decade. Or it’s half empty: three quarters of hearing aid users are paying out of pocket, including Medicare recipients.

Here’s a breakdown of reimbursement by insurance provider. Before you decide to change insurance companies, take heed of Hearing Tracker’s caveat: Please remember that the dollar figures below represent recollections and guesses of hearing aid consumers, and may not accurately depict differences among companies. Screen Shot 2018-10-29 at 8.17.14 PM

The comments accompanying the article show that coverage is hugely variable, with many readers writing in to tell their own experiences. There seems to be no definitive answer to what insurance covers what, even in the same state with the same insurance company. This is not unusual in the health-insurance field, as followers of Jeanne Pinder’s ClearHealthCosts.com know.

Three states mandate hearing-aid coverage for adults. Arkansas requires coverage of $1400 per aid every three years. New Hampshire $1500 per aid every 60 months (every five years). Rhode Island $800 per aid every three years. As Bailey wrote: “If you live in one of these states, consider yourself lucky.”

This survey got its start last spring,  when I asked Bailey whether the discussion of over-the-counter hearing aids and non FDA-approved “hearables” had had an effect on the market. I was also curious about insurance coverage, partly because a friend of mine had just gotten two high-end hearing aids, fully covered by his insurance. As far as I can recall, I have never received reimbursement for a hearing aid, so I was surprised.

Bailey responded with the idea of a survey,  which he created. It was sent to those who subscribe to his website, those who follow my website, and to HLAA members. The  respondents represented an experienced and committed group of hearing aid users, and their responses may not be representative of hearing aid users as a whole.

The first report on the survey was published in June 2018 and focussed on the cost of hearing aids. You can read that report here.

I said above that there is no definitive answer to what insurance covers, even in the same state with the same insurance company. Actually, there is one question with a definitive answer: Does Medicare cover hearing aids? The answer is a categorical No.

 

For more about hearing health, read my new book, which will tell you everything I know about hearing loss, hearing aids, and hearing health!Smart Hearing Cover final

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it. 

 

 

My New Book

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

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

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

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

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

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

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

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

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