He Doesn’t Look Disabled.

How many times have those of us with hearing loss been told that we don’t look deaf, whatever “looking” deaf means. It’s hard enough to make people recognize invisible disabilities. but today’s New York Times has an Op-Ed that suggests it’s okay to question the disabled status even of someone with visible disabilities.

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In “The Truth About Harvey Weinstein’s Walker,” Jasmine E. Harris, a professor at the law school of the University of California, Davis, argues that the “‘aesthetics of disability’ produce visceral responses in jurors and the public that can lead them to be more (or less) sympathetic when weighing a defendant’s liability, public responsibility and, in the end, punishment.”

While not outright accusing Weinstein and his attorneys of manipulating a perception of disability, Ms. Harris does say conclusively that this has been done by others: “Or the truth might be that he, like many others before him, will hope the benefit of disability aesthetics will help him in the courtroom.” (Italics mine.)

Readers quickly picked up on his rumpled clothes and slippers as further proof of his phony disability, but don’t forget that Weinstein seemed to spend much of his time in a bathrobe even in so-called business meetings. (I have zero sympathy for Weinstein, so don’t misconstrue my argument.)

Weinstein may be exaggerating his inability walk unaided, but I’m shocked that a professor of  law would suggest that we doubt someone’s else’s disability. It’s hard enough for those with disabilities to get the aid and services they need — or even a seat on the bus or the subway — without someone with Ms. Harris’s credentials suggesting that it’s okay to question someone’s right to their disability status.

It may be a clever legal strategy, but it undermines the credibility of all people with disabilities. Truthfully, I don’t think this was Ms. Harris’s intention, but it certainly lends itself to the argument that, like the welfare queens of the ’60’s, some people with disabilities just want favored treatment.

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

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

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.

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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!

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Surfer Girl Wears Hearing Aid

One of the things that makes wearing hearing aids easier is having a good role model. This is especially true of children. This year American Girl, the hugely popular doll company, named as its 2020 doll of the year Joss Kendrick, who was born with hearing loss and wears a hearing aid in her right ear.Joss photo_vertical

Like all American Girl Dolls, Joss comes with a story (which can be bought in book form) and accessories. Among Joss’s accessories is her removable hearing aid. Joss is going to have to be able to take that hearing aid out because she’s also a surfer, and we all know that hearing aids and salt water don’t mix. When Joss isn’t surfing, she’s part of a cheerleading team. All these talents require accessories, including a surfboard and swim gear, cheerleading outfits, a backpack and competition cheerleading shoes.

American Girl partnered with the Hearing Loss Association of America, with a $25,000 donation and dolls to be given out a various Walk4Hearing events in 2020. American Girl dolls aren’t cheap. Joss costs $98 and comes wearing a bathing suit, hoodie and shorts. The surfboard, cheerleading outfit, books and so on will cost you extra.

I’ve always thought of American Girl as the G-rated alternate to Barbie. When my daughter, now 33, was young, we gave her a doll, Kirsten – a Swedish American girl in the 19th century. She saved up her $2 a week allowance and money earned at odd jobs to buy Samantha, a brown-haired turn of the century (19th) schoolgirl. In my memory Samantha wore glasses, which would have made her a precurser to Joss, but I think my memory is wishful. Some of my feminist friends with girls resisted the craze, but my husband and I didn’t see any harm in it, and in fact our daughter is now a highly competent adult with her own business.

Another good role model for children with hearing loss is El Deafo, Cece Bell’s graphic memoir for children. As I wrote in the New York Times Book Review in 2014:

It takes a bit of an inner superhero to get along as someone “special” in a classroom full of “normal” kids. Bell’s book should be an inspiration for those who are “different,” and it should help others to understand just what being different means. Required reading isn’t always fun reading. “El Deafo” should be the first and is definitely the second.

Other role models include the young heroine of the Amazon Prime Video series “Undone,” 28-year-old Alma, whose cochlear implant is at first incidental to the story, but later plays a role in the plot. Sports figures are also role models, including Tamika Catchings. Here’s an interview with Ms. Catchings, just before the 2016 summer Olympics and tied to the publication of her memoir Catch a Star: Shining Through Adversity to Become a Champion. This link is to Amazon but it is available from many booksellers.

Readers, if you have a favorite role model, especially one for young people, please let us know about it in the comments section.

 

For more about living with hearing loss, read my books: Smart Hearing and Shouting Won’t Help, available in paperback or as a Kindle ebook on Amazon.com

Medicare and Hearing Aids

Medicare doesn’t cover hearing aids. This is the one thing about hearing loss that never fails to surprise people new to the field. The fact that Medicare doesn’t cover hearing aids even for the most severe and disabling hearing loss is even more shocking. Despite universal agreement among health care practitioners that untreated hearing loss can lead to serious mental and physical problems in older adults, Medicare won’t support the single best treatment: hearing aids.

The Good News.  On December 16, Congress passed a bipartisan bill to cover hearing aids and hearing audiology services. HR 3 allows the Federal government to negotiate prescription drug prices and use these savings to cover the costs of hearing, dental and vision services. This is an issue that the Hearing Loss Association of America and other groups have been advocating for for years. In addition to covering hearing aids, the bill permits reclassifying audiologists as practitioners under Medicare, qualifying them for reimbursement. The audiology professional groups — the AAA, ADA, and ASHA — urged the Senate to adopt the measures. HLAA praised the action as a “significant step forward.”

The Caveats. While celebrating the passage of HR 3 as a historic achievement, HLAA urged caution. The bill must be passed by the Senate, where there is significant opposition to negotiating drug prices. “Senators, as well as the Trump Administration, are exploring other ways to lower the cost of prescription drugs,” HLAA said in a statement. “Whether these alternatives will also include hearing aid coverage under Medicare remains to be seen.”

Don’t Wait to Get Hearing Aids. The sooner you treat hearing loss, the more effective the treatment is likely to be. So don’t wait for Congress to get its act together and actually make this provision law.

The National Institute on Aging notes that untreated hearing loss can lead to depression and isolation, as well as cognitive decline and dementia. Hearing problems are also also associated with greater risk of falls, which can be devastating for a vulnerable adult. Medicare doesn’t cover vision or dental care either, meaning that older adults may be on their own financially when it comes to three components of healthy aging. It’s a short-sighted policy and one that may finally be rectified.

If you can’t afford hearing aids sold through private audiologists, alternatives exist. Consider the big box stores like Costco, which sells brand name hearing aids at lower prices than independents. Other stores like Best Buy, Sam’s Club and Walgreens also sell hearing aids, although they cannot legally be called “hearing aids” without FDA approval. Many insurers sell affiliated  brands of hearing aids at a much lower cost than you would pay privately. United HealthCare, for instance, sells hearing aids through hiHealth Innovations. HearingTracker allows you to compare hearing aid prices in a geographical area, Readers, please share other alternatives to high-priced hearing aids in the comments section.

Consumer electronics products are good starter hearing devices (Don’t go too cheap.)  In addition, sometime in 2020 the FDA will issue its regulations for over-the-counter hearing aids, making access to FDA approved hearing aids cheaper and more accessible.

For now, it’s great that Congress was able to take a little time out from impeachment to get this important bill on the agenda.

For more about living with hearing loss, read my books: Smart Hearing and Shouting Won’t Help.

 

 

 

 

 

Noise is a Public Health Issue

Noise is bad for your hearing. This will not be a surprise to anyone.

But this week the American Public Health Association made it official.  “Noise is not just a nuisance,” an APHA statement said, “It’s a growing public health hazard and action is long overdue.” Noise was a focus at this year’s annual APHA meeting, which noted that “environmental noise” in particular affects health well beyond hearing loss.noise11

APHA cited everyday sources of noise, like leaf-blowers, construction, and loud music — as well as the widespread use of personal listening devices, which are often turned up dangerously loud. They noted findings that noise is associated with a host of associated health issues: dementia, heart disease, diabetes, sleep disruption, and obesity. (It’s important to remember that “associated with” does not mean “caused by.”)

Comparing environmental noise to second hand smoke, the group urged updating and acting on a 2013 APHA noise policy statement that advocated federal action. Dr. Daniel Fink, founding chair of The Quiet Coalition, a Quiet Communities Inc. program, also urged a change in terminology, making it more like that used by engineers and physicists. The change is from “unwanted noise” to “unwanted and/or harmful sound.”

This week’s announcement also noted that the way we measure sound now does not necessarily reflect the real-world impact of noise on health and communities. Low-frequency components in landscape, construction, and air traffic noise may vary from one instance to the next. Dr. Jamie Banks, executive director of Quiet Communities, Inc, noted that harmful noise from a gas-powered leaf blower carries a longer distance than that from a battery electric blower even though both are rated at the same decibel level. “We have the technology to better understand the noise characteristics that impact health and community,” Dr. Banks said. “It’s time to employ it.”

 Dr. Arline Bronzaft, a City University of New York professor emerita, has been making the case against urban noise for decades.  She urged APHA members to renew support for the organization’s noise control policy published in 2013.  “The evidence on noise as a public health hazard was convincing 40 years ago,” Dr. Bronzaft said. “Now, despite even stronger evidence linking noise to adverse effects on hearing, the cardiovascular system, metabolism, and psychological health, learning, and cognition, we are not moving forward aggressively enough to reduce the many sources of noise pollution in our communities.”

Two years ago in a column called “Turn Down the Noise,” I wrote about the findings from a poll conducted by the American Speech-Language-Hearing Association. Forty-one percent of those polled said they were concerned that exposure to loud noise may have harmed their hearing. More than 50 percent said they worry that future noise exposure could be harmful to their hearing.

We know noise is bad for our hearing. We have to make a commitment to do something about it.

For more about living with hearing loss, read  Smart Hearing, available at Amazon.com, or Shouting Won’t Help, available at Amazon and other booksellers. 

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Emergency 911 is still inaccessible for many New Yorkers. How long do we have to wait?

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In New York City, where I live, the deaf and hard of hearing are out of luck when it comes to calling 911 for help.

Text 911 (or Text-to-911) is available in thousands of municipalities and counties across the United States. It can be life-saving not only for those who cannot hear but also for people with speech impediments, for those in hostage situations, in domestic violence disputes, or in active shooter scenarios, among others.

So where is New York City’s long-promised 911 texting system?

In June 2017 New York City’s Department of Information & Technology (DoITT) announced a plan for a fully digital 911 system that could handle texts, photos and videos as well as phone calls. That system, Next-Generation 911, was scheduled to launch in the first quarter of 2022. In the interim, the city would offer a more modest 911 texting service, expected to go into service by early 2018, according to the June 2017 announcement.

In November 2019, the City Council held a hearing to see why New York still lacks a basic Text 911 system. A panel of members of the Deaf community, speaking through interpreters, described harrowing experiences with 911. On a later panel, a man overcame his stutter to eloquently describe the insulting treatment he’d received from impatient 911 operators. Another speaker recalled being stranded at a highway bus stop at night with no way to communicate her whereabouts.

I testified on behalf of those with hearing loss and explained that even with a hearing aid and a cochlear implant I cannot hear well enough to respond to a 911 operator’s questions, especially on the street. I pointed out that the inability to report an emergency endangers not only the individual trying to make the call but others in the area. A deaf friend recently told me about encountering a dangerously disturbed man on the subway, who was agitated and aggressive to other passengers. Unable to call 911 and with no authorities in sight, she left, feeling “irresponsible and guilty for not following through.” It’s the city that should feel irresponsible and guilty.

Don’t hold your breath waiting for NextGen, which officials said is at least four years away. The city has yet to select a contractor for the system. Nor is the interim system anywhere in sight. Current estimates for the interim system are for the summer of 2020.

For more information about Text 911, go to the FCC’s Text-to-911: Quick Facts and FAQs. The FCC also maintains a frequently updated master list of areas that have Text 911.
Readers, if you’ve had difficult or dangerous experiences with 911, please comment. If you live in an area with Text 911, please share what that experience is like.

 

For more about living with hearing loss, read my books, available at Amazon.com. (If you want to buy the paperback of Smart Hearing, wait. Amazon has it listed at $18.25 for some reason. It should be $10.99.)

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By the Way, She Has a Cochlear Implant

What if hearing aids were as unremarkable as glasses? This is an idea – a goal – that I and others have been tossing around for years. How to remove the stigma and lower the cost of hearing aids so that they are used as casually as glasses.

Amazon Prime Video is showing an online series that does just that – and more. The central character in “Undone,” 28-year-old Alma, wears a cochlear implant. In the first minutes of the first episode we see Alma putting a cochlear implant on her ear as part of her morning getting-dressed ritual. No comment is made about it. It’s just there, part of who she is.

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Alma, left, and her cochlear implant. Undone, Amazon Prime Video

The implant is white and Alma’s hair is black, so it is often visible. But it’s visible in an unremarkable way. It’s not until well into the series that we find out why Alma wears it, and how she lost her hearing. After she had chicken pox as a child, her parents realized she wasn’t hearing. At first they sent her to a Deaf school, where in flashbacks we see she learned to sign and was happy with other kids who were also Deaf. But Alma’s parents wanted her to get an implant, and Alma reluctantly agreed. We briefly see her working with a hearing-rehabilitation counselor after the surgery.

Alma has a lot of problems, but hearing loss isn’t one of them. The implant occasionally is part of the plot, although as with the first scene when we see her putting it on in the morning, it goes unremarked. When Alma wakes up in the hospital after an accident, she can’t hear until someone hands her the implant. At one point she throws it on the floor in frustration – but the frustration is not over her hearing. For Alma, throwing the implant is the same as throwing a shoe across the room (although potentially much more costly – don’t throw your cochlear implant across the room).

Amazon describes Undone as a “genre-bending, animated dramedy that explores the elastic nature of reality through its central character, Alma.”  The show isn’t about hearing loss. It’s about time travel, altered mental states, mental illness, a dead father and a mystery about his death. The animation is beautiful, hyper-real but also ghostly. Every once in a while the world flies apart or Alma falls down a rabbit hole, and the animation makes it believable.

I have some differences with the show as regards hearing loss. Alma’s hearing loss is bilateral and she’d probably wear two implants rather than one. She also has what must be a remarkably well fitting earpiece, because it never falls off no matter how much she’s tossed and turned around by her version of reality. And then of course it also survives being thrown across the room.

But how great to have a cochlear implant play an almost incidental role. Alma’s cochlear implant implant is as unremarkable as glasses.

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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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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.

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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.

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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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Captions: Better and Better!

I don’t like to write about apps and products that I don’t use myself, because the first-person experience is very important when dealing with hearing devices. But when I find one I like, I want to share it.

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In the past few months, I’ve been using a transcription app called Otter.ai. Otter has been around since early 2018 and is intended to be a transcription tool for business and other meetings. But it’s great for the deaf and hard of hearing. Otter is available for iPhone or Android. It’s free for the first 600 minutes a month, which is more than enough for me. Upgrading to 6000 minutes costs $9.99 per month or $79.99 per year for business, $2.99 per month for students and teachers.

It’s very simple to use. Once you’ve downloaded it you tap the microphone icon and start talking. Otter recognizes different voices and starts new paragraphs with each new speaker. It also punctuates fairly accurately. You can adjust the size of the type. Although I haven’t tried this, I believe it can identify each speaker.

The transcript takes a while to show up, which can be confusing if you are using this to hear. The first few times this happened to me, I thought Otter was not connected to the internet via Wifi or cell. Now I know I just have to be patient. One way around the problem is to start talking into the app before the important part of the conversation begins. When the transcription finally appears, start your meeting. From here on the transcription will be close to real time. Be sure to read the privacy policy if you are concerned about confidential material.

I have increasingly found, however, that although Otter is recording the conversation it is not providing captions — or at least live captions. It seems to be related to wifi access. Since I — and my readers — are much more interested in Otter as a captioning device than as a recording device, it’s important to understand whether or not the app can work on cell service or if it requires Wifi. I didn’t realize how much of an issue this was when I wrote the post. I’ll research it and amend the post as needed.

Also, as noted in the comments below, if you are also using your telecoil to access a hearing loop or other assistive device, Otter turns your telecoil off. Not good. Otter is not intended as a captioning device — it’s meant for transcription. So maybe we’re asking more of it than it is offering.

Nevertheless, if all goes well, the conversation is saved and can be accessed from your computer for editing. For a fuller description of what Otter can do, read this review from PC Magazine.

Some of you may have read “Captions Wherever You Go,” a post I did on Google Live Transcribe last spring. Once I discovered Otter I stopped using Google because it was much easier to have one phone for all functions. But Android users may find Google Transcribe more to their taste than Otter.

My other favorite app is Innocaption, which is meant specifically for the deaf and hard of hearing. I’ve been using this app on my iPhone 8 for the past year or so, and it is also available for Android. Previously, the only way I could talk on the phone was with my landline captioned phone.

After you register with Innocaption and download the free app, you’re ready to go. Innocaption will assign you a phone number, but if you’ve been using another mobile phone number and don’t want to change, you can have the Innocaption number forward to that number for both incoming and outgoing calls. If you have a Made for iPhone or Android hearing aid, the sound will go wirelessly to your hearing aid or cochlear implant. The captions appear on your phone screen. If you don’t have a Made for iPhone or Android device, you can use a streamer to transmit the audio.

You can transfer your contact list as well as your favorites list. Innocaption also keeps a record of recent calls. To make a call, you click on the Innocaption icon. You can make a call much the way you always have, either by clicking on a favorite number or by inputting the number on the keypad. To answer an incoming call, click on the Innocaption icon on your smartphone screen. Innocaption also provides captioned voice mail. An icon of what looks like a pair of glasses appears on the icon. Tap once and takes you to the keypad. Tap once on the hashtag. it will automatically dial your voice mail. Just follow the prompts to get messages and to save or delete. Innocaption, for the most part, uses human transcribers, which improves accuracy. If no humans are available, it offers a voice-recognition transcription. I find that if I hang up and try again in a few minutes, a human often is then available.

Most smartphones have other dictation apps as well. On the iPhone, any text app also has a microphone app that will provide a live transcription. Here’s a link to various tricks you can use with dictation apps to save time and increase accuracy. If you want explicit directions for using a dictation app, check out this article from Business Insider.

Please share your experiences with these or other apps in the comment section.

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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