NEWS & VIEWS
January-February 2019

www.hearinglossnyc.org       212-769-HEAR       info@hearinglossnyc.org

FEBRUARY 19 CHAPTER MEETING
Our Rights Under the
Americans with Disabilities Act
Lise Hamlin, HLAA National's Director of Public Policy, will do a presentation about what people with hearing loss are entitled to in employment, housing, legal, medical, and other settings.

Tuesday, February 19
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) 

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.
JANUARY CHAPTER MEETING RECAP
Shared Stories: Living with Hearing Loss
Former HLAA-NYC President Anne Pope (shown standing at the dais, next to the CART screen and CART transcriber Lauren Schechter), presided over a meeting during which attendees talked about the challenges of hearing loss and strategies to overcome those challenges. Anne began by mentioning her sudden, adult-onset hearing loss, and said that after six years of struggle, "I found HLAA. This organization saved my life. It kept me from feeling like a victim. The more we take control of our own hearing loss, the better off we will be." Among the comments from current HLAA-NYC board members:

     • Carol Karasick: A person I worked for used to say, “If you see one person with Alzheimer's disease, you've seen one person with Alzheimer's disease.” The same is true for hearing loss. Everybody experiences it differently. I started with mild hearing loss, got hearing aids, and then had a sudden, steep decline. I faced months of anguish. Finally, a friend told me about a new ENT. This wonderful man sent me to an audiologist who, in addition to fitting me with effective hearing aids, told me about telecoils, neck loops, and HLAA.
     • Jon Taylor: Having severe hearing loss no longer means being left out of things. At home I have an amplified captioned phone. My cell phone streams directly to my hearing aids. At movies I always ask for a captioning device. I'm able to enjoy the theater in part because the Theater Accessibility Program's open-captioned performances. Now there is a new app, GalaPro, that provides captioning. I can't say enough about how HLAA has improved my life. Many of the technologies and services I described have been made available due to HLAA advocacy.
    • Rick Savadow: When I'm with a group of people, I ask them to look at me when they talk to me. I always find that this request stimulates conversation about the need to address hearing loss.
    • Mary Fredericks: Sometimes it's just whatever works. I was in a restaurant with a friend, and neither of us could understand the waiter when he recited the specials. So I asked someone at a neighboring table if she could listen to the waiter and describe the specials to us. She did, my friend ordered one of the specials, and she loved it.
    • Ruth Bernstein: Road Scholar offers hearing accessible trips. Before I went on a trip to Scotland, I wrote and described what I needed--and they accommodated me. It's just an issue of saying what you need.
    • Barbara Bryan: Don't hesitate to ask for help. When I exited a Metro North train at the wrong stop, I couldn't use my cell phone to call my friends and tell them where to pick me up. So I approached a stranger who was very willing to help. Regarding medical situations, I ask personnel to handwrite or type instructions--or I use my cell phone's dictation app, which transcribes what doctors and nurses are saying.
    • Myra Schreibman: Some people do get it. When I had cataract surgery i was amazed--and delighted--that a nurse told the anesthesiologist that he had to take his mask off so I would hear what he was saying.
    
Other comments focused on the pluses of the annual HLAA conventions, speech-reading classes, the importance of having a sense of humor about hearing loss, why clear speech trumps loud speech, and the trials and tribulations of noisy restaurants. 

In the words of immediate past Chapter President Holly Cohen, "We are all hearing loss ambassadors. Everywhere we go, we're educating people about what it's like to live with hearing loss." Moderator Anne Pope agreed and added, "We need to ask for help, because most people love to give it. We also need to build quiet time into our lives. We are going heroic jobs living with hearing loss and should pat ourselves on the back often." 
DECEMBER CHAPTER MEETING RECAP
Ask the Audiologists
About Hearing Aids and Cochlear Implants
Susan B. Waltzman (standing in the photo), Co-Director of NYU Langone's Cochlear Implant Center, and Jessica Galatioto (seated), Director of Audiology at Columbia University Medical Center, were the speakers.

Jessica stressed the need to find a hearing health care professional you feel comfortable with. "Besides questions about the hearing aid and the price of the devices," she said, "you have to ask yourself before you get hearing aids: 'Does this person take my needs into consideration before suggesting a device? Can I see him or her regularly?' You don't just buy a hearing aid and walk out the door. It takes many visits. You want it to be convenient and you also want to be able to be open with the audiologist and say this isn't working for me. The level of comfort is as important as the device.”

Jessica continued, “Of primary importance is how effectively hearing aids help you hear. Make sure you like the sound quality first. Then you can talk about peripherals.” Among those peripherals:
• Does the aid contain a t-coil?
• Is it rechargeable?
• What apps work with the aid?
• Does it stream to my mobile phone?
• How will I function in hard-to-hear situations, such as baseball games, noisy city streets, restaurants?
• Is my hearing aid going to do everything automatically or will I have to press a button?
• Will I have to buy a separate adapter to hear television?
• Does the aid have Bluetooth capability?

Jessica acknowledged that no hearing aid is going to provide normal hearing. "Hearing aids deliver an acoustic sound," she said "meaning the aid is taking sound, amplifying it, and sending it through the ear canal where it is being processed by the cochlea. Sometimes hearing loss is so bad hearing aids will not help. That's where cochlear implants come into play."

Susan began her talk by describing how cochlear implants (CIs) differ from hearing aids. She explained, "Hearing aids deliver sound through the ear. When signals don't get in because the ear's hair cells cannot transmit sound, CIs bypass the damaged cells and stimulate the hearing nerves on their own. You wear something behind the ear and something is surgically implanted into the ear."

When it comes to cochlear implants, as with hearing aids, the need for device counseling is important, Susan stressed. She noted, " There's always concern about surgery and there are some populations, especially the elderly, where general anesthesia is not advised. Our surgeons have been successfully performing cochlear implants using local anesthesia. The ages run the gamut. We've implanted 94‑year‑olds; we've implanted five-month-olds. "

Unlike hearing aids, most CIs are covered by commercial insurers and by Medicare. "If you’re struggling to hear with hearing aids, that's the time to investigate getting a cochlear implant," Susan said. "Research has indicated that if you have a hearing aid on one ear and a cochlear implant on the other ear, you can tell where a sound is coming from better. The outcomes are very similar for older patients and younger adults. You have improved speech understanding in noise and in quiet, an increased quality of life, and less depression in the older population."
Hearing Accessible Tour of the
Manhattan Tenement Museum
by Ruth D. Bernstein
The Tenement Museum ( www.tenement.org ), at 103 Orchard Street in lower Manhattan, gives hearing accessible tours focused on the populations that lived on the Lower East Side over the years.
The Museum has always been one of my favorite places in New York. My father-in-law, who was born to a poor family in Poland, immigrated to the USA, where he became a successful businessman. He lived on Orchard Street as a child. He talked about crowded living conditions but never mentioned the lack of fresh air and light, the air shafts, and sharing a toilet with all the tenants on the floor.
Recently, the Museum offered a tour of a “renovated” apartment. Each room tells about the lives of three families that lived in the same space sequentially—Holocaust survivors who had two daughters (the 1950s), a Puerto Rican couple with two sons (the 1960s), and a Chinese family with a son and three daughters (the 1970s).
In October, Toni Iacolucci and I joined eight people for a tour of that apartment. As we walked through the rooms, we used headphones or a neck loop with an FM receiver and read the docent’s explanations on our cell phones or on iPads supplied by the Museum. Those who signed used the computers because there were no ASL interpreters on the tour. The CART providers, Wendy and Amy of All Hands in Motion, stayed in a classroom, wearing receivers that were tuned into the docent's transmitter and typed on their computers.
The staff person in charge of the event spoke with the deaf participants in sign language before and after the tour. I used my iPhone and a neck loop with the transmitter and was able to understand every word. Toni, who is deaf and doesn’t sign, read CART on her iPhone. In addition to the docent’s description, we were given a four-page handout that showed the families’ citizenship applications, a draft notice, oral history transcripts, and other information.
Each room was decorated with attention to the smallest details, including family photos, mezuzahs, and appropriate lighting fixtures. The tour had many captioned videos shown on old TVs. A garment factory in one room contained six commercial sewing machines. Each machine had a computer screen in the base, covered with sheer fabric, showing captioned explanations about the work and life of the Chinese women who labored in the factories. The grand finale was a large group photo taken in 2016 of the families who had lived in the apartment, plus their spouses, children, grandchildren, and great grandchildren, many of them waving small American flags.
After the tour we gathered for snacks representing the foods of each culture. The Tenement Museum staff is to be complimented on a job well done, with special thanks to our educator Megan Elevado, the caption operators Wendy and Amy, and Ellysheva Zeira for arranging the captioning. We look forward to participating in the next CART tour in May 2019.
Upcoming Chapter Meetings
Topics Subject to Change
Tuesday, February 19
Our Rights Under the Americans with Disabilities Act — in the workplace, housing, the courts, hospital settings, and elsewhere. Speaker: Lise Hamlin, HLAA's Director of Public Policy.

Tuesday, March 19
Mary Sano, Professor of Psychiatry and Director of Alzheimer's Disease Research at the Mt. Sinai School of Medicine, will discuss how hearing loss affects cognitive health.

Tuesday, April 16
The Impact of Hearing Loss on Relationships. Joseph J. Montano, Professor of Audiology at Weill Cornell Medicine, will moderate a panel consisting of several pairs of relatives and friends - one with hearing loss, one with normal hearing.

Tuesday, May 21
Otolaryngologist Lawrence R. Lustig will discuss a clinical trial being conducted at Columbia (with Johns Hopkins and the University of Kansas Medical Center) to regenerate hair cells through gene therapy. He will also talk about other research initiatives into finding a cure for hearing loss.

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. We will compile responses and share in a future issue of News & Views.
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 the Local Law 27 enacted to make direct access available to all branches of city government.
The facilitators can help you to 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.

• Logon to the website of the Mayor’s Office for People with Disabilities (MOPD).

• Contact Eli Fresquez of MOPD at 212-788-2548, click here.
Watch Movies with Captions at
AMC and Regal Theaters
Our Favorite Hearing Loss Blogs
Discount Prices for
Open-Captioned Theater Performances
through TDF
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
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 the latest list of looped sites. The list was compiled by HLAA-NYC members Alexandra Lutz and Ellen Semel.
 
BROADWAY LOOPED THEATERS
 
From the Nederlander Organization
Gershwin: Wicked
Minskoff: The Lion King
Richard Rodgers: Hamilton
Lunt-Fontanne
 
From the Shubert Organization
Bernard B. Jacobs: The Ferryman
 
Lincoln Center
Vivian Beaumont: My Fair Lady

Second Stage
Helen Hayes Theater

Off-Broadway
Irish Repertory Theater: Shadow of a Gunman
Westside Theatre (Upstairs Theatre)
Support HLAA - Become a Member
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 a  membership form .
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.