NEWS & VIEWS
January - February 2020

212-769-HEAR


President's Message
At a time of so much national turmoil, it’s hard to find a place where you can trust that people are doing good. That’s how I feel when I meet with my HLAA colleagues either in board or chapter meetings. We’re there for each other—sharing experiences, supporting each other’s transitions to new stages of life or new stages of hearing loss.

The past few weeks featured two ways that plays out.

HLAA was founded in 1979 by Rocky Stone under the name SHHH—Self Help for Hard of Hearing People. Every January, we have a chapter meeting that highlights Rocky’s model of self-help. Members gather and—with the help of chapter leaders as facilitators—share their experiences with hearing loss. This year the theme was advocating for oneself—everything from asking a restaurant to turn down the background music to asking for CART captioning at a public event to using assistive listening systems or caption devices at movie theaters.

Self-advocacy is a misnomer. When we advocate for ourselves, we advocate for others as well. Every time we ask for accommodations, we remind the hearing world that many of us need captions, assistive listening systems, and adequate signage to get through the day. So every time you ask a concierge for a caption device, you’re reminding theater workers that these are vital and necessary accommodations.

The second feature was quite different. Jon Taylor, our chapter Vice President, had a big birthday in February. He asked friends and family to donate to our chapter in lieu of gifts and the results were amazing. There were a couple of large donors but most were in the smaller ranges—reminding us once again that all donations are important. At last count Jon’s birthday wish had raised $5,000 for the chapter.

We have great spring chapter meetings coming up. Check them out on hearinglossnyc.org under “Programs.” Looking forward to seeing you the first Tuesday of March, April, and May. 

Katherine Bouton, President, HLAA-NYC
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MARCH 3 CHAPTER MEETING
How Hearing Loss Relates to Depression and
Dr. Bret Rutherford and Dr. Ana Kim of Columbia University Medical Center will speak about the psychological effects of hearing loss and how hearing loss relates to depression and dementia. Dr. Rutherford is board certified in psychiatry. Dr. Kim, who is board certified in otolaryngology and neurotology, specializes in ear diseases, hearing loss, and cochlear implants.

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.
FEBRUARY 3 CHAPTER MEETING RECAP
Emergency and Home Safety for
People with Hearing Loss
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Andrew Perlman (standing by the piano) and Sam Lawson from New York City Emergency Management talked about emergency planning, particularly as it applies to people with disabilities, including hearing loss.

Emergency disaster prevention, Perlman noted, “means preparing the public, as well as police and fire departments and other agencies in case of a major flood, fire, hurricane, power outage, blizzard, or other disaster that displaces city residents from their homes.” S helters are generally staffed by city workers. Efforts are made to have people on site who know how to provide accommodations—whether it's for an ASL interpreter, a CART Provider, or a personal amplifier. According to Perlman, in all service centers and shelters, communication access is priority number one.

Focusing on communication access as it relates to the hearing loss community, Perlman said, “When the city provides services during emergencies, we want to make sure everybody has the opportunity to benefit from services. We don't have separate plans for people with hearing loss. Or separate plans for people with developmental disabilities. We integrate your needs into our existing plans. Whether it's an emergency shelter or service centers that the city operates, accommodation requests are honored."

If you have to leave your home and go to an emergency shelter, there is a registration process. You're not required to provide identification, but Emergency Management wants to identify medical or other immediate needs. The emergency shelters are pet friendly so people who need help don’t have to abandon their animals.

Sam Lawson pointed out that recently a law was passed that requires every New York City landlord with more than six residential units to provide emergency information to tenants. “We worked with the fire department and other agencies like the New York City Housing Authority to put together an emergency guide for each building,” he said. “Your landlord is required to distribute that to you once a year.”

How do you prepare yourself and your family for an emergency? Make a plan, gather supplies, and get informed. After an emergency your phone might not be working or you might lose your internet connection. So write things down. “We recommend that you write the names and contact information of all the people you depend on and who depend on you. Also write down medical information,” Lawson said.

How do you get in touch with your loved ones if there is no Internet or cell phone connection? Everyone should decide on a meeting place with people in their support network. According to Lawson, “You want to have two meeting places so if one is inaccessible you can use the second one. We also recommend that you have specific things that you can grab and go in the event of an emergency. These might include your phone, a charger, and important documents that cannot be easily replaced, including the deed to your home and your birth certificate. In Lawson’s words, “Having these things makes bouncing back much easier.”
JANUARY 7 CHAPTER MEETING RECAP
Shared Stories
Chapter board members Ruth Bernstein and Nancie Collin moderated a meeting during which participants described self-advocacy strategies.

Nancie began by telling her own story: “Despite telling a dental hygienist I had a hearing loss, she kept talking in back of me with a mask on. I had to remind her three times to remove the mask and face me. But that's the hearing world for you. We have to keep educating and re-educating people how to communicate with us.”

Ruth mentioned a blog post she wrote, Everybody Is Somebody . “The gist is that by advocating for yourself, you're advocating for everybody with hearing loss,” she said.

Among the other self-advocacy comments:

• Customer service people who are reached via telephone wear headphones and speak through a microphone. Ask them to put the microphone close to their mouth. If the person speaks heavily accented English, say “I have a hearing loss. Can you get someone who does not speak with an accent?”

• When going to an event that does not have reserved seats, ask in advance about getting seats up front.

• When you make a reservation in a restaurant, mention that you have a hearing problem and need a quiet table. Ask for a seat against the wall, which acts as a buffer for the sound.

• If you're not satisfied with your hearing aids, report this to your audiologist. Be as assertive and descriptive as possible about what the problem is so the audiologist can adjust the aid accordingly.

• In a medical setting, ask for whatever you need—a pager, a pocket talker, or CART. According to board member Toni Iacolucci, “Doctors and medical staff don't know that hard of hearing people exist. I've asked for CART, explained what it is, and gotten a sign language interpreter. If every hearing impaired person who goes into a waiting room asks for a pager, eventually there will be pagers in every waiting room."

On the HLAA-NYC website and on the HLAA national website, there is a one-page Communication Access Plan (CAP) form that you can fill out and bring to medical service providers. It describes your hearing status and the services you need when you're in a medical setting.

Participants also mentioned the latest speech to text apps, including Otter, which can be downloaded to an iPhone, and Live Transcribe, which requires an Android phone. With InnoCaption, an app that transcribes the voice on the other end of your smartphone, the captions are done by a live person, providing greater accuracy. These apps are new and vendors are always asking users for feedback. The more feedback we give them, the better they'll become.

Ruth Bernstein summed up the meeting by noting, “There is a tremendous stigma that comes with hearing loss. My contention has always been that if it's okay to wear glasses, it's okay to wear hearing aids. And you'll feel a helluva lot better if you get up, advocate for yourself, and take charge of the fact that you need help. It's a wonderful four-letter word—HELP."

In the photo, from left to right: Board members Nancie Collin, Ruth Bernstein, and Myra Schreibman.
Census 2020
by Ruth Bernstein
In December, board member Carol Karasick and I attended a New York Public Library Outreach Committee meeting about Census 2020. At that meeting, we learned that because of undercounting in 2010, New York lost two congressional representatives. From a high of 45 in the 1930s, we are down to 27 and may lose two more after the 2020 census. The city also lost $1.3 billion in funding for education.

The next week, I attended a Make Manhattan Count meeting at the Manhattan Borough President’s Office. I learned there are 1.4 million residents in Manhattan, 40 percent of whom are foreign born. The census form will be available in 12 languages. Since the last census, 192,000 new addresses have been added.

At HLAA-NYC’s January chapter meeting, U.S. Census Bureau representative Joli Golden (shown in the photo) emphasized the need for a complete and accurate count. “The census determines the division of $675 billion in federal funding among the states,” she said. “That's funding for Medicaid, Medicare, SNAP benefits, infrastructure, and other government programs. In order to allot this money, we need to know what services are needed and how many people live in certain areas.”

According to Jodi, the 2020 census is more accessible than ever. For the first time it will also be available online. After you get a letter that includes a code, you can go online, put in the code, then enter the rest of the information. "We're hoping to save trees by having people fill it out online and via telephone," Jodi said, "but if you prefer a paper form you’ll get one in the mail. You can respond via any of those methods from March 12 until July 31." If you don't respond online, by phone, or by mail, a census representative will visit."

The 2020 Census is very important! Please make every effort to participate.

For more information go to nyc.gov/census.
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, March 3
Dr. Bret Rutherford and Dr. Ana Kim of Columbia University Medical Center will speak about the psychological effects of hearing loss and how hearing loss relates to depression and dementia.

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.

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
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;
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: Company (opens 3/2)
 
Lincoln Center
(both ticket booths are looped)
Vivian Beaumont: Flying Over Sunset (previews begin 3/12)
Mitzi E. Newhouse: Intimate Apparel ( previews begin 2/27)

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.