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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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.

 

 

 

 

 

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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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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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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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.