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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