NEWS & VIEWS November - December 2019 www.hearinglossnyc.org 212-769-HEAR info@hearinglossnyc.org

President's Message

As the calendar year ends, we are halfway through our formal program of chapter meetings. This fall we heard from experts on hearing-assistive devices, making the workplace more hearing friendly, over-the-counter and other alternatives to conventional (and expensive) hearing aids, and the benefits of auditory rehabilitation after a sudden hearing loss or getting a cochlear implant.  We always devote the January meeting to what, for lack of a better term, we call a “rap session.” Members share their own hearing loss experiences, with moderators guiding the discussion. This year’s theme is “self-advocacy.” We will share experiences of asking for accommodations like CART, requesting the installation of a hearing loop in a venue you visit regularly, speaking up about lack of microphones, asking friends and family to look at you when they speak to you, and making sure medical personnel put hearing loss into your chart and then act accordingly when speaking to you.  The meeting is on January 7; doors open at 5:30 for snacks and chat, the program runs from 6 to 7:45. Full information about this meeting and our winter/spring 2020 schedule is on our website, hearinglossnyc.org.  We hope to see you on the first Tuesday of every month, January through May, at 40 East 35 th   Street. Best wishes for happy, hearing-accessible holidays!  Katherine Bouton, President, HLAA-NYC

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JANUARY 7th CHAPTER MEETING Shared Stories

Chapter board members Ruth Bernstein and Nancie Collin will moderate our annual interactive meeting, where members share their stories about living with hearing loss . Socializing and refreshments, 5:30-6 pm Meeting, 6-8 pm Community Church of New York Assembly Room 40 East 35th Street, between Madison and Park Avenues one flight down (elevator available) CART (real-time captioning) provided by Lauren Schechter of TotalCaption. In addition, the meeting room is equipped with an induction loop that transmits sound directly to hearing aids and cochlear implants equipped with telecoils. An ASL interpreter will be provided with five business days notice.

DECEMBER 3rd CHAPTER MEETING RECAP Improve Your Hearing Through Auditory Rehab

Speech-language pathologist Elizabeth Ying, co-director of the Shelly and Steven Einhorn Audiology Communication Center at the Center for Hearing and Communication (CHC), outlined the advantages of aural rehabilitation—also known as listening therapy—for children and adults with hearing loss. Looking back, Liz noted, “In the 1980s the definition for what was aural rehabilitation focused on determining communication strategies needed for vocational, educational, and social situations. In the '90s, our goal was to improve everything across the patient's lifespan. Not very realistic. Now, while acknowledging that hearing is a sense, we stress that listening is a skill. Our focus as rehabilitationists is on that skill aspect. You don't just hear with your ears; you also hear with your brain. Hearing aids often make sound louder, but not clearer. Hopefully my professional input and guidance will help in that area.” Aural rehabilitation usually begins with a listening evaluation. “It means I'm basically going to do the same thing that audiologists do in a soundproof booth, but it's going to be in my noisy office,” Liz said. “That's going to give me a better picture of how you're functioning in a day to day environment. It's my job to figure out what you need in order to facilitate your understanding in a variety of situations. As an auditory therapist, I have to challenge clients because real life is challenging. And the best way to do that is noise.” CHC has speechreading classes, Liz pointed out. But she added, “There are so many sounds that look the same on the lips, and so few are perceptible to you if you rely solely on speechreading, that I feel speechreading is primarily an enhancer.” Liz noted it is not within her scope of clinical practice to provide one on one counseling. “But we do talk,” she said. “You can't have an individual auditory therapy session without considering the situation that the individual is in, or the challenges they experience. If I have a patient who doesn't go outside and has no social life then I need to address that and try to find that person an appropriate means of getting back into the real world.” According to Liz, auditory training works best with patients who have the motivation and the desire to make improvements. She recommends starting with a small amount of therapy so that progress can be assessed as you go along. “We might have to modify our expectations because of the way you are progressing,” she noted. “I encourage you to realize that life is going to continue. These difficult listening situations are going to be there. To avoid them is not the answer. Auditory therapy doesn't matter if you never get outside. Practice is critical and crucial."

NOVEMBER 5 CHAPTER MEETING RECAP Alternatives to Traditional Hearing Aids

In a talk that focused on over-the-counter hearing aids and other hearing products, Kevin Franck—director of audiology at Massachusetts Eye and Ear and a member of the HLAA board of trustees—stressed the need to make hearing help more accessible to people who, due to the high cost of hearing aids and the stigma of hearing loss, have done nothing to address their auditory difficulties. Kevin noted, “Hearing products range in terms of complexity, availability, and price—from free apps that turn your smartphone into a hearing aid all the way to cochlear implants that cost as much as $100,000. According to Kevin, hearing aid and CI prices have much to do with services, including counseling, connectivity (“How much will it talk to other devices, including your telephone?”), and services (“What happens if something goes wrong?").There’s also acoustic fit—when an audiologist adjusts a product to your measured hearing loss. Regarding counseling, Kevin noted, “When you buy a consumer device from Amazon you’re on your own, whereas when you get something from professionals, they usually advise you how and where to use it. We complain about the price of hearing aids and implants, but a lot of customization, counseling, and service comes with them.” The genesis of over-the-counter hearing aids began in 2015 when—in large part due to prodding from HLAA—a group of professionals from the Institute of Medicine (now the National Academies of Sciences, Engineering, and Medicine) were brought together to study why so few adults with hearing loss get hearing health care. The result was a 2017 law requiring the FDA to categorize certain wearable hearing devices as over-the-counter aids, and to issue regulations regarding these devices by August 2020. In Kevin’s words, “I applaud HLAA as a small organization with a big voice that has literally changed the law.” Because OTC hearing aids are intended for people with mild to moderate hearing loss, Kevin pointed out, “These hearing aids are likely not for this audience. But they're still very important to you because the companies who make them will innovate and force the companies who do make products for you to innovate as well. I believe the price will begin to come down for the products, and services will be billed separately. Moreover, when more people are wearing devices that help them hear better, the stigma around hearing loss will melt away.” He concluded, “I think it's going to be messy for a couple of years. A lot of companies are going to rush in, and it's going to be very confusing. By the time the dust settles, I'm very excited about what this will do.”

Join HLAA "Closed" Facebook Group to connect with HLAA members

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.

Upcoming 2020 Chapter Meetings Chapter meetings are held on the FIRST Tuesday of each month.

Tuesday, January 7 Shared Stories. Chapter board members Ruth Bernstein and Nancie Collin will moderate our annual interactive meeting, where members share stories about living with hearing loss. Tuesday, February 4 Emergency and Home Safety for People with Hearing Loss . Speaker: Andrew J. Perlman, Program Manager, New York City Office of Emergency Management. Tuesday, March 3 The Psychology of Hearing Loss: Sudden Hearing Loss. Speakers: psychiatrist Bret Rutherford and otolaryngologist Ana Kim of Columbia University Medical Center. Tuesday, April 7 The Lighter Side of Hearing Loss. Gael Hannan, author of The Way I Hear It , offers a humorous look at living with hearing loss. Tuesday, May 5 Accessible New York . Speakers will discuss accommodations for people with hearing loss. Nisha Agarwal, senior advisor, Office of the Deputy Mayor for Strategic Policy Initiatives, will speak about accessibility in voting and civic engagement. Jessica Murray, an accessibility advocate at the CUNY Graduate Center and member of the MTA's Advisory Committee for Transit, will speak about accessibility on public transit. A third speaker, TBA, will discuss accessibility in the New York Library System. ALL TOPICS ARE SUBJECT TO CHANGE BASED ON THE AVAILABILITY OF THE GUEST SPEAKERS. Location: Community Church of New York Assembly Room, 40 E. 35th Street (between Madison and Park Avenues).

Having Trouble with Closed Captioning on TV?

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 . After you file a complaint, please let us know at info@hearinglossnyc.org.

Access to City Government

Do you know that every department of NYC government now has someone designated to facilitate assistance to people with hearing loss and other disabilities? HLAA-NYC helped get Local Law 27 enacted to make direct access available to all branches of city government. The facilitators can help you obtain CART (real-time open captioning) or confirm the availability of an assistive listening system at a meeting or event. To find the name, telephone number, and email address of these Disability Service Facilitators: • Go to hearinglossnyc.org, then c hoose Disability Service Facilitators from the “Resources” drop-down menu.  • Log on to the website of the Mayor’s Office for People with Disabilities (MOPD). • Contact Eli Fresquez of MOPD at 212-788-2548, or click here .

How to Have the NYC Best Cinema Experience

Whether you prefer to see movies with captions, an assistive listening device, or both, all NYC cinemas now are required by law to accommodate people with hearing loss.   Cinemas today must provide closed-caption viewing devices, the most common of which is a goose-neck device that fits in your seat’s cup holder and displays captions. Very few theaters today offer caption-viewing glasses, chiefly because of their high cost. Captions can only be viewed if the digital packages (known as DCPs) sent to cinemas by movie distributors contain caption tracks. Most major motion picture releases today include caption tracks; however, low-budget and special interest films often do not. Also, captions are generally not available on pre-movie trailers and advertisements, so you must wait for the movie to begin to know if the viewing device is working.  We continue to advocate for the inclusion of a CC graphic in online and other media showtime listings. But because most listings do not indicate if captions are available for a particular movie, HLAA-NYC recommends calling cinemas before purchasing tickets if you wish to view closed captions. It is also advisable to ask for confirmation that the caption projection system is working in your chosen movie’s auditorium. Even so, because caption viewing depends on proper maintenance and functioning of equipment, failures do happen. Always report problems and request movie passes before leaving a cinema.    Individual cinemas, such as Alamo Drafthouse (with one location in Brooklyn and a second opening soon in Lower Manhattan), and specialized film festivals and events at venues such as Film Forum, JCC Manhattan, Film Society Lincoln Center, and Symphony Space, sometimes offer open-captioned screenings. HLAA members are encouraged to request open-captioned performances to help promote increased accessibility.  For assistive listening, both chain and independent cinemas offer receivers and headsets, as well as neck loops if needed for "hearing aid compatibility," provided your hearing devices have telecoils and your audiologist has activated them.   The Landmark at 57 West (on 57th Street and 12 th Avenue in Manhattan) is the city’s first cinema with induction loops in each of its three auditoriums for unencumbered, unassisted t-coil listening.

Our Favorite Hearing Loss Blogs

Ruth Bernstein I'm Still Hear: My Cochlear Implant Adventure I’ve been dealing with my deteriorating hearing for four decades. As the years went by and my hearing continued to get worse, Dr. Lafargue , my ever-patient CHC audiologist, encouraged me to consider a cochlear implant (CI). I was reluctant because I have a long history of hypersensitivity and allergic reactions to medications and anesthesia. My allergy to the plastic in hearing aids also did not bode well for CI devices. Read more of this post . Katherine Bouton Emergency 911 Is Still Inaccessible for Many New Yorkers 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? Read more of this post. Shari Ebert How to Combat the Stigma of Hearing Loss Stigma is defined as “a mark of disgrace associated with a particular circumstance, quality, or person.” It often arises from external forces like prejudices, stereotypes or societal norms, but it can also come from inside ourselves — perhaps as we internalize the negative perceptions of others or suffer from a generalized fear of being different from the norm. Stigma surrounding hearing loss can make us afraid to admit that we have trouble hearing. Read more of this post. Gael Hannan Was that MY Name They Just Called? I write about hearing loss; it’s what I do. Since 2011, I’ve written weekly articles on hearing loss for this site, and a blog from that year is one of my personal favorites: Speak Up Doc, I’m Hard of Hearing . In the article, I moaned and whined about the challenges that people with hearing loss experience at the doctor’s office, the hospital, drop-in clinics, the dentist, surgery – in short, healthcare. Eight years later, things haven’t changed much, so I’d like to offer an edited version of the original (because writers are always itching to edit their past work). Read more of this post. Mary Grace Whalen Oliver Sacks: Doctor, Writer, Artist and Amazing Human Being Dementia. Parkinson’s Disease. Tourette syndrome. The world of the deaf. Vision and perceptions. Autism. Covering conditions from cradle to grave, in his case studies Dr. Sacks put a face on the condition. His examples helped us to understand ourselves and those we know who may be afflicted with such conditions. He cared deeply about all of us. Much like Elisabeth Kübler-Ross, rather than simply quoting peer-reviewed journal studies, his books remind us of the reality of having real people in our lives who have these conditions. Read more of this post. Nancy Williams Hearing Health Affirmations from a Singer by Dawn Mollenkopf, Guest Writer As a child, while my friends gathered rocks and leaves, I collected inspirational sayings. As an adult, I would recite one of them when I had a bad day. Eventually I posted them one at a time on my bathroom mirror so that I would see the saying before I left the house in the morning and went to bed at night.When I went through a complicated and painful divorce, a friend suggested I write affirmations. I took those inspirational sayings from my bathroom mirror and personalized them into affirmations, positive statements about myself. Here is my list of affirmations specifically for my role as a mezzo-soprano with hearing loss. Read more of this post.

Discount Prices for Open-Captioned Theater Performances through TDF

The Theatre Development Fund's Accessibility Programs (TAP) offer a membership service for theatergoers who have hearing loss or are deaf. TDF/TAP obtains special seating and provides open captioning. There is no annual fee but you must provide proof of eligibility. To see current availability and to join, visit  TDF Accessibility Programs .

Website for Theatergoers with Disabilities

Those who are hard of hearing or deaf, have low vision or are blind, who cannot climb stairs, who require aisle seating or wheelchair locations, who are on the autism spectrum or have other developmental or cognitive disabilities, can find out everything they need to know to choose a show, buy tickets, and plan their trip to Broadway by visiting TheatreAccessNYC . I

Hear Better with Looping; NYC Looped Venues

DEFINITION OF LOOPING A hearing loop is a wire that circles a room and is connected to a sound system. The loop transmits the sound electromagnetically to the telecoil (t-coil) in a hearing aid or cochlear implant.  NYC LOOPED VENUES Thanks to advocacy efforts by HLAA-NYC members, more and more venues in the metropolitan area are now looped. Click here to see a complete list of looped sites, compiled by HLAA-NYC members Alexandra Lutz and Ellen Semel. The following theaters offer induction loops:   Nederlander Organization Gershwin: Wicked Minskoff: The Lion King Richard Rodgers: Hamilton Lunt-Fontanne: The Tina Turner Musical   Shubert Organization Bernard B. Jacobs   Lincoln Center (both ticket booths are looped) Vivian Beaumont: The Great Society Mitzi E. Newhouse: Greater Clements  Off-Broadway Irish Repertory Theater Second Stage Westside Theatre (Upstairs Theatre)

Honor Someone with a Gift to HLAA-NYC 

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.