NEWS & VIEWS
September-October 2021
212-769-HEAR
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PRESIDENT'S REPORT
by Jonathan Taylor
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I would like to pay special tribute to Anne Pope who has decided to step down from the chapter’s Board of Directors. She has been one of the heroes of HLAA and hearing loss advocacy, serving on the chapter and national boards for many years, including terms as chair of both boards. As chapter chair, she accomplished many important things, including the establishment of a looping advocacy group; compiling a guide to looped venues; and rolling out a new website and Facebook page. The Walk4Hearing originally came about because of Anne’s initiative, and in 2011, she arranged for walkers to have access to CART on their cell phones. Although I have only known her for a few years, I have invariably found her to be a source of intelligence, common sense, and good will. In addition, her vast store of institutional knowledge has been invaluable to us at Board meetings. I know that we will miss her on the Board, but fortunately for us, she has promised to remain active in the chapter. |
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Sunday, September 19 was a beautiful day for this year’s edition of the Walk—perfect weather, a great turnout, including many families with kids. We were cheered on by cheerleaders. Board member David Landsberger interviewed people in the crowd and took video that was streamed on Zoom for people who could not attend the Walk in person. CART maven Lauren Schechter provided captions. City Council member Helen Rosenthal, who has been a great friend to HLAA and the hearing loss community, spoke about INT 2020, a bill she has sponsored to require open captions in movie theaters. If you haven’t already contacted your City Council representative, I urge you to take the time to do so. Click here for a list of Council members with email links. If you live outside the five boroughs, email and call Speaker Corey Johnson to voice your support.
Although we had a great day in the park, donations to the Walk were far below the levels of previous years despite the enormous total of $9,635 raised single-handedly by HLAA-NYC Board member Anne Pope, whose friends and relatives contributed generously. It has been disappointing that so few of our members contribute to support the chapter. The total amount raised, 40 percent of which goes to the chapter and 60 percent to national HLAA, is of course important. But one of the measures of the success of a fundraising drive is the participation rate. When very few people contribute, it appears that the organization’s activities are not valued. Even if you are not in New York City, if you attend our programs and find them helpful, please consider donating to our chapter by clicking here. Contributions of any size would be appreciated.
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SAVE THE DATES
Fall (Virtual) Chapter Meetings
CART provided by Lauren Schechter of Total Caption
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- TUESDAY, NOVEMBER 2
- 6:00 PM 7:30 PM
Representatives from Apple and Google will present their newest and best hearing assistive technologies. Sagar Savla will talk about Google technologies for Android phones. Another speaker will talk about iPhone technology.
- TUESDAY, DECEMBER 7
- 6:00 PM 7:30 PM
Gabriela Lena Frank, the Grammy-award-winning composer-in-residence with the Philadelphia Orchestra, will discuss her hearing loss and how it has affected her development and professional success as a composer. She may also play some short recordings of her work. Born in Berkeley, California, to a mother of mixed Peruvian/Chinese ancestry and a father of Lithuanian/Jewish descent, Gabriela explores her multicultural heritage through her compositions. Gabriela was included in the Washington Post's list of the 35 most significant women composers in history.
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Encore Talkback on Award-Winning Documentary about Hearing Loss
WE HEAR You
Thursday, October 28
7-8 PM
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We Hear You was conceived, filmed, and directed across two continents during the COVID-19 pandemic. The film features four women with hearing loss, each navigating stigmas, setbacks, and successes as they strive to live well despite the challenges of hearing loss. It is executive produced by HLAA members Roxana Rotundo, Shari Eberts and Holly Cohen, and features HLAA member Toni Iacolucci.
To watch the documentary, click here. The link will be live until October 28th, the date of the Talkback. If you'd like to watch the Talkback, register
to receive a link.
Visit we-hearyou.com to see the trailer and learn more about the documentary.
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Support Open Movie Captioning |
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Please continue to make your voices heard. A bill in the City Council would require cinemas to show movies with open captions. Email and call your Council member. Ask him or her to co-sponsor Int. 2020 and request a hearing.
Click here for a list of Council members with email links. If you live outside the five boroughs, email and call Speaker Corey Johnson to voice your support.
Are you among the more than 500 New York City residents who have signed the change.org petition for open captions? Click here to sign and here for a fact sheet about the issue.
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HLAA New York State Conference
September 16-18, 2022
Complete survey below
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The New York State Association of the Hearing Loss Association of America (HLAA) will host a three-day educational and entertainment conference at the historic Queensbury Hotel in Glens Falls, New York, in the beautiful Adirondack mountains. The conference will take place on Friday, September 16, through Sunday, September 18, 2022.
With a theme of “Recharge, Reconnect, Reimagine," the HLAA-NYSA Conference will enable participants to meet vendors to learn about the latest in hearing health, communication access, and the technologies and strategies that help people with hearing loss live well and maintain productive lives. Enjoy the Fall season with us in upstate New York!
Kindly answer a few questions on this survey to help the HLAA New York State planning committee plan a great conference for you!
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September Meeting Recap
NYC Transit and Accessibility
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The main speaker, Jessica Murray, chair of the New York City Transit Advisory Committee for Transit Accessibility (ACTA), advocates for improving transit accessibility in New York City. She was joined by MTA's Deputy Chief Accessibility Officer Rachel Cohen.
Regarding transportation barriers for people with disabilities, Jessica said, “It's not the individual's fault, it's society's fault for failing to make our environments and buildings inclusive for people with disabilities.” She noted that if people with disabilities—including hearing loss—are willing to advocate to lawmakers, they're a a lot more likely to get the accommodations they need. In response to Jessica’s presentation, HLAA-NYC chapter president Jonathan Taylor recommended advocating “for yourself and the hearing loss community. It really does enhance feelings of autonomy and competence.”
Rachel Cohen began her talk by mentioning that people want the ability to travel independently, comfortably, and with confidence. Feeling safe and welcome in the transit system and knowing what's going on is absolutely critical to that. Rachel noted that the myMTA smartphone app is “a great source of information for folks who travel with smartphones and provides a whole range of information about buses, subways, and railroads.”
Rachel continued, “It's the unplanned stuff that's the challenge. The diversion that wasn't part of the schedule. The parade that diverts the bus. Those are harder things to capture and get to our customers in real time. One of the things we're working on now is adding push notifications to the myMTA app. So if you use the app and there's some unplanned service disruption you'll get a notification on your phone. If you're not able to hear the announcements, that's going to put the information at your fingertips."
About half of New York City buses now have digital information system (DIS) screens that show the next stop as well as upcoming stops. Rachel said the transit system will add about 1,000 more DIS screens by the end of 2022. As per Rachel, “We’ve gotten feedback on how to make the screens more visually accessible in strategic locations. We want to be able to share security announcements, notifications that a train will skip the next stop, and other information. The goal is universal accessibility.”
Jessica acknowledged “The MTA is a huge old system that's not easy to fix. It is going to take a lot of time. But I am very happy that we're in dialogue with Rachel and her team. Reach out to me if you want to get involved. We need to hear more voices.”
To watch a video of the meeting on YouTube, click here.
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October Meeting Recap
A New Way to "See" Your Hearing Loss
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Composer/inventor Jay Alan Zimmerman and audiologist Brad Ingrao discussed how the current audiogram design often causes confusion for patients because it doesn't provide a full and accurate view of hearing ability. Jay described how these problems led to the creation of his full-spectrum audiogram design—the Hearing Visualizer (as seen in the illustration)—which transforms the audiogram's image of "hearing loss" into a visual of a person's "field of hearing."
Jay began his talk by asking, “Why is the medical community focused on hearing loss instead of hearing ability? Could this scary language be making people hesitant to get their hearing tested?” Brad replied by acknowledging, that audiologists “focus almost entirely on what you can't do,” primarily because “when we began to formalize the measurement of hearing, we got stuck in that medical model of trying to cure a problem. Somewhere along the line, we began to use language that defines people by what they don't have. I hope that at some point I can—as an audiologist—stop being stuck in this tunnel vision and focus more on what people can do.”
As the meeting proceeded, Jay showed his video, How to See Hearing Instead of Hearing Loss, which can be viewed here. Regarding hearing aids, Jay noted, “We now have advanced settings for phones and the internet, so there's no reason why there are no advanced setting options so that people who have hearing difficulties could have more choice or control. Regarding audiograms, Jay said, “Those X and O lines for your hearing ability are horizontal. Imagine rotating them so they're on either side of you. That will give you a sense of how far‑hearing or near‑hearing you are. If they're near the top, you're going to be very far‑hearing. If they're near the bottom, like me, you're going to be very near‑hearing. If they have some sort of shape, like a ski slope, those shapes will reveal your frequency focus.”
Looking toward the future, Jay asked Brad whether audiologists can adjust to a new system. “Could they give up the X's and O's? Could they talk about hearing in a positive way? Because this might eliminate a lot of stigma. Could they give us options in how we view our hearing and give us more freedom and control? What can we do to normalize hearing healthcare so that from cradle to elder care you understand your hearing and you can be proactive in how to best use your ability?”
Brad responded, “I believe that it can change, but it will change, as you suggested, in the consumer electronics space; in the spaces that are designed to enhance quality of life rather than to correct for deficit. I think the upcoming legislation about direct‑to‑consumer products and over‑the‑counter hearing aids will help. But I will also say, you all will make that happen, not me. I am going to follow your lead as a person who wants to be engaged in your hearing care.”
Jay concluded by suggesting “better words”—hearing ability or hearing difference instead of hearing loss. He said, “You can start to think of your hearing as an ability instead of an abnormality. What do you hear best? Things that are close? Things that are loud? Things that are low? Do you want to try to understand how far you hear, and what things you want to bring into the space? Then ultimately we will be able to develop products.”
For more details about the Hearing Visualizer, click here. To watch a video of the meeting on YouTube, click here.
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Our Favorite Hearing Loss Blogs |
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Ruth Bernstein
Hearing Access for All!
Since the pandemic began, I have participated in many online events. I have asked for and been given captions, mostly as ASR—computer generated speech recognition. Sometimes I’m lucky and get CART—a live operator who uses Communication Access Real-Time Translation. I recently received a request to participate in a study about hearing access from an out-of-state audiologist. The announcement did not say captions would be available, so I asked if they would be. The answer came back no. No? What do you mean no? Read more of this post.
Katherine Bouton
Talk About Hearing Loss. A Lot
Why is it that everyone who develops hearing loss seems to have to start at Square 1 to figure out what to do about it? I was reminded of this when I read an article by Deborah Copaken, PSA: Your AirPods Pro Are Hearing Aids. It appeared on Copaken’s blog Ladyparts on Substack. Generally first time writers on hearing loss get a lot wrong, but Copaken got it right. Her discovery of the facts about hearing loss, however, and the apparent novelty of the information for those who commented on the article, reminded me of how little most people know about this condition. Read more of this post.
Shari Eberts
Hearing Loss & Music: When My Brain Fills in the Blanks
“I love this song,” my son calls out from the ocean where he is swimming off the back of the boat. The boat’s speakers are weak, but strong enough for my family to enjoy the music in the background. They all break into their best rock star moves, bopping their heads to the music and lip-syncing into their pretend microphones. I watch them and smile, but I don’t join in. Not yet. “What song is it?” I ask. They are too busy jamming to reply at first, but eventually one of them will voice the lyrics out loud. Only then do I stand a chance of making the connection and getting in on the act. Read more of this post.
Gael Hannan
Hearing Loss—Why Me?
We struggle to hear. We put our head in our hands as tinnitus rages and hyperacusis makes unbearable sounds inside our skull. Why me? We ask this silently to others but loudly to ourselves. Why does this have to happen to me? Why can’t I have an issue that medication or therapy can fix, or at least eliminate for a few hours or a few days? If the universe could answer you, or God and the angels, or whatever spirits sustain you – they might answer this: Why NOT you? Read more of this post.
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Join HLAA "Closed" Facebook Group;
Connect with HLAA Members Across the Country
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The Hearing Loss Association of America – Official Community and Support closed Facebook group enables members to ask questions, share experiences, and offer support on how to live with hearing loss. Due to its “closed” status, members can comment and post without having either show up on their newsfeed. According to the group's administrators, "The primary focus and goal of HLAA is to create a safe haven and community for those who experience this world with hearing loss." To access and join the group, click here. |
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Having Trouble with Closed Captioning on TV? |
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Closed captioning (CC) gives people with hearing disabilities access to television programming—and provides a critical link to news, entertainment, and information—by displaying the audio portion of broadcasts as text on the television screen.
If you're unhappy with the quality of the closed captioning on a specific program, make your voice heard by filing a complaint with the FCC. It only takes a few minutes. Click here.
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Support HLAA - Become a Member |
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As the nation's leading organization for people with hearing loss, we provide information, education, support, and advocacy for the millions of Americans coping with hearing loss. Join online or download membership form. |
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Searching for the perfect way to observe a loved one's birthday, anniversary, or special occasion, OR to honor the memory of someone special? Please consider making a gift to HLAA-NYC Chapter to support our efforts.
You can donate online or by mailing a check (payable to HLAA-NYC) to HLAA-NYC Chapter, P.O. Box 602, Radio City Station, New York, NY 10101. Include name and address. An acknowledgement will be mailed. Donations are tax deductible.
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