NEWS & VIEWS
July - August 2017
 
      www.hearinglossnyc.org           212-769-HEAR         info@hearinglossnyc.org

WE'RE COUNTING ON YOU!

Summer means fun in the sun. But summer is also when we prepare for our annual Walk4Hearing. This year's event, on Sunday, September 24 in Riverside Park, will soon be upon us.
 
If you haven't registered yet, please do so now and make your donation. Remember, the Walk is our only fundraiser - generating over 90 percent of the Chapter's operating revenue, while also supporting the work of our national office. Since our previous News & Views report, the NYC Walk4Hearing has gone from less than $10,000 to over $26,000. There's still a long way to go to reach our ambitious $150,000 goal, but we're making progress!
 
We'd like to see all our Chapter members registered. If you've never been to a Walk, it's an exciting outdoor event - even if you don't stroll through the park and along the river - with refreshments, attractions such as face-painting for children, tables with information from sponsors, and a short starting-line program with entertainment and brief remarks by city officials.
 
Walk New York! is the Chapter's team. Click here to go to our team page, then click the green "Join Team" box at the top right and follow the prompts.
 
If you'd like to "get" as well as "give," consider starting your own team. This link will take you to the main NYC Walk page. Scroll down and click "Register as a Team Captain and Start a Team" and follow the prompts.
 
Or give and get as a member of the Chapter's team. Share the Walk flyer on the website or just email or speak to your friends and neighbors to help spread the word about hearing loss and ask for their support.
 
Chances are you know how challenging life can be for children and adults with hearing loss. But you probably also know how little understanding others have of what it's like. September 24 will be one day when our hearing loss won't be invisible. Let's all help make it a big success.

WE'RE MOVING!
SAVE THE DATES FOR THE SEPTEMBER AND OCTOBER CHAPTER MEETINGS
HLAA-NYC's upcoming chapter meetings will be from 6 to 9 pm at the Community Church of New York's Community Room. The church is located at 40 East 35th Street (between Madison and Park Avenues). The Community Room entrance is to the right of the main entrance. The venue is wheelchair accessible. Hearing accessibility is provided via hearing loop and open captioning by Lauren Schechter of TotalCaption. ASL interpreter will be provided with five business days notice.

At the Tuesday, September 19th chapter meeting, "What National Is Doing for You," New York City members of the HLAA Board of Trustees will discuss advocacy and other initiatives HLAA's national office is pursuing. 
 
The October meeting, on Tuesday, October 17, is titled "Everything You Need to Know About Hearing Loops."  Audiologist Juliette Sterkens, HLAA National's hearing loop advocate, will be the guest speaker.
 
HLAA-NYC MEMBER BARBARA BRYAN
RECEIVES SPIRIT OF HLAA AWARD AT 2017 CONVENTION
HLAA members from across the country gathered at the 2017 HLAA Convention, held in Salt Lake City, Utah from June 22 to 25. The Convention  featured workshops about advocacy, hearing aids, cochlear implants, communication, hearing assistive technology, hearing loops, and state/chapter development.  Friday morning began with a r esearch symposium:  Hearing Aids and Cochlear Implants: Merging Technologies, Expanding Benefits. That evening, several HLAA members were showcased at a talent show, with Nancy Williams as MC. The following night, Gael Hannan performed her funny as well as poignant show, The Cranky Cochlea accompanied by Stu Nunnery on piano.

At the awards ceremony that preceded the talent show, HLAA-NYC board member Barbara Bryan (third from right in the photo below) received a Spirit of HLAA Award. This honor is " dedicated to people who are not only actively involved in HLAA but who set an example for others as positive role models of the self-help philosophy."

Because Barbara was unable to attend the convention, HLAA-NYC Past President Holly Cohen read her acceptance speech: "Thank you! What a surprise it was to learn I'd be receiving this honor. I want to take this opportunity to especially thank the NYC chapter for oh, so much! After being forced by my declining hearing to give up my career in psychotherapy and teaching in 2001, HLAA rescued me with supportive, caring, infinite stimulation and challenge, not to mention fun! A bonus has been acquiring an excellent education on what makes for quality leadership. What an honor it is to be a member of such a lively, dedicated, and creative group of people committed to enhancing the lives of all of us with hearing loss. The New York City Chapter rocks!"

Learn more about this year's convention by reading the  Program Book .
 
HLAA-NYC PARTICIPATES IN
THIRD ANNUAL DISABILITY PRIDE PARADE
From left to right: Rick Savadow, Toni Iacolucci, Holly Cohen, Barbara Bryan,
Ruth Bernstein, and Mary Grace Whalen
 

On Sunday, July 9, seven HLAA-NYC Chapter members participated in the Disability Pride Parade from Union Square Park to Madison Square Park. We were part of a gathering of people with many disabilities that has grown from 1,500 participants in 2015 to 2,500. As the only one in the HLAA group who has walked in all three parades, Ruth Bernstein asked the others to share their reactions to this unique experience.
 
Barbara Bryan: I am proud to have been in the very first Disability Pride Parade. It was quite an experience to participate in the public unveiling of people with disabilities. It was as though we all came out of hiding . We're making progress! City Councilwoman Helen Rosenthal and Commissioner of Disabilities Victor Calise are symbols of the progress we have made by creating city laws greatly benefitting those of us with hearing loss - all this since the first Disability Pride Parade!
 
Holly Cohen: Hearing loss was visible at the parade thanks to Ruth Bernstein, carrying a sign displaying HLAA's logo and HLAA-NYC members wearing Walk4Hearing buttons. We heard NYC Disability Commissioner Victor Calise and City Council member Helen Rosenthal speak about accessibility and appreciated that the  area in front of the stage was looped and CART was provided.There is no way to capture the energy of the day - come next year and find out! 
 
Toni Iacolucci: It was wonderful to help create a presence at the parade for people with hearing loss and an inspiration to join so many others who experience different challenges. Thanks to Commissioner Victor Calise and his staff at MOPD for organizing this important event and for providing an opportunity to walk proudly with thousands of others who share our strength.
 
Rick Savadow: It was a thrill to be part of the Disability Pride Parade and feel the camaraderie of the people there. The enthusiasm was contagious. We were there to own our invisible disability and let people know, "Yes, we are a community of hard-of-hearing people who have learned how to live better with hearing loss. We are working on spreading that word more effectively in the future!"
 
Gail Weiss: It was gratifying to see so many participants make a statement about the prevalence of various disabilities and how disabilities - despite the term's negative implications - can be overcome by enthusiasm, resolve, and determination to succeed.
 
Mary Grace Whalen: It was an honor to march with HLAA-NYC. Persons with disabilities need more visibility and a voice in our society. Although pollsters like Harris and Pew often quote how other segments of our diverse population feel about many issues, there has been no recognition of what we, as part of the disabled population, feel. This must change! Let's all be part of this positive movement. 
 
HLAA-NYC invites our chapter members, family, and friends to join us at the 2018 Disability Pride Parade. It is an experience you don't want to miss.

THE ABCs of COMMUNICATING in  HEALTHCARE
A dvocate by sharing your Communication Access Plan:
         
The best way to advocate is to raise awareness, provide information, and be prepared. Bring your CAP to all medical appointments. It is important to inform staff about your hearing status whether or not you require aids and services.
 
Sample completed CAP forms can be found in the Guide for Effective Communication in Healthcare at this link.
 
B e willing to continue to ask for what you need:
 
If you request aids or services and they are not provided, contact the practice manager, patient advocate, or nurse manager to arrange for accommodation.
 
C omplain if you need to:
 
No one likes to complain but sometimes, it is the only way to get the services you need for the safest and best care. If aids or services are provided but still do not allow you to communicate effectively, file a complaint. In addition to making a difference in your care, it may benefit other people who are hard-of-hearing or deaf. Here is more information for filing complaints  
 
To share a communication success or challenge you have experienced in a healthcare setting, write to Toni Iacolucci and Jody Prysock at healthcareaccess1@gmail.com. Your comments may be used in future publications or documents. If you prefer to remain anonymous, please let us know when you submit your story. Submissions should be no more than 150 words.
 
Effective communication is a right, not a privilege!

 
HLAA-NYC STUDENT AWARDS
HLAA-NYC President Katherine Bouton with 2017 award winners Ja-Mel Vinson and Jordana Suriel (holding certificates) and 2016 winner Xinbei Liu.

At the June board meeting, two high school seniors with hearing loss - Ja-Mel Vinson of Brooklyn High School of the Arts and Jordana Suriel of Beacon High School - received $1,000 awards from HLAA-NYC, to be used toward their college education, plus a one-year HLAA digital membership. A third scholarship winner, Fort Hamilton High School student Samuel Longshteyn, was unable to attend the meeting.

Prior to the presentation of this year's awards, Xinbei Liu, one of last year's winners, talked about her freshman year at the Rochester Institute of Technology. A biochemistry major, Xinbei described college as "a journey" that presents challenges. "My first tip is ask for help. It will always be worth it. And find time to have fun."
 
Ja-Mel, who will attend SUNY Oswego, was born three months prematurely. He got hearing aids at age 6 after imploring his mother, "When are you going to take me to the doctor so I can hear again?" Jordana is headed for Skidmore College. She struggled for many years in school until hearing aids and an FM system put her on the path to academic achievement. The opening paragraph of her essay, which focused on different kinds of love, concluded, "The best love is to accept your imperfections."

MAY CHAPTER MEETING RECAP
Over-the-Counter Hearing Aids 
  
Joe Montano. Lauren Schechter's CART screen is in the background.

Joe Montano, an audiologist at Weill Cornell Medical Center and a founder of HLAA-NYC, spoke about over-the-counter hearing aids, which have been the focus of a bipartisan congressional effort. Senators Elizabeth Warren (D-MA) and Chuck Grassley (R-IA) introduced the Over-the-Counter Hearing Act in the Senate in March 2017. The companion House of Representatives bill, sponsored by Representatives Joe Kennedy III (D-MA) and Marsha Blackburn (R-TN), was passed on July 12.
 
"We don't know what is going to come of this," Joe said. "But many people are talking about it. Among his reservations about OTC aids, Joe noted, "Because there are no standards, it's possible that people aren't going to be fit appropriately. So while I'm enthusiastic about the idea of over-the-counter hearing aids, I want to tread carefully."
 
On the plus side, Joe said, "We reach about 20 percent of the people who could benefit from hearing aids. I love the idea that because people won't have to spend $7,000 to $8,000 on a set of hearing aids, more people might purchase aids. The more competition there is, the better. If the over-the-counter hearing aids are really good products, hearing aid manufacturers are going to have to up their game. They're going to have to improve their products. And they're going to have to reduce prices."
 
Joe also expressed the hope that over-the-counter aids will ease the stigma associated with hearing loss. "The more people who have access to these devices, the more normal it becomes," he said. "So I think that may be a really good side effect of over-the-counter hearing aids."

WE NEED YOU!!!
We welcome your involvement to volunteer at the Walk4Hearing on September 24. If  you're  interested, please complete the  volunteer form on the chapter's website s o that we can place you where you be will most  comfortable and useful. Questions? Email info@hearinglossnyc.org.
 
HAPPY 100th BIRTHDAY
Margaret Paine (right), a member of HLAA since February 2000, celebrated her 100th birthday on July 1.
 
She was born and raised in Brooklyn before moving to Stuyvesant Town in Manhattan, where she has resided for over 60 years. After graduating from Brooklyn College in 1939 with a degree in English, Margaret pursued a career in publishing. She moved on to positions in office management before  retiring at the age of 65. Around that time she began to lose her hearing. Initially she was told that hearing aids would not help her, but she persisted and has successfully worn hearing aids for 35 years.
 
An avid reader and self-professed political junkie, Margaret enjoys watching political programs and socializing with her many friends.
 
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 updated list of looped sites. The list was compiled by HLAA-NYC member Ellen Semel, with the help of Alexandra Lutz.

BROADWAY SHOWS CURRENTLY AT LOOPED THEATERS

From the Nederlander Organization
Gershwin: Wicked
Minskoff: The Lion King  
Richard Rodgers: Hamilton
Lunt-Fontanne: Charlie and the Chocolate Factory

From the Shubert Organization
Bernard B. Jacobs: Bandstand

Lincoln Center
Vivian Beaumont: Oslo
Mitzi Newhouse: Pipeline

WATCH MOVIES WITH CAPTIONS AT AMC & REGAL THEATERS

Captioning, which has long been required on television, is also available at  AMC and Regal theaters.

AMC offers CaptiView, a goose-neck device that fits into your seat's cup holder and displays all of the movie's dialogue in text. Regal provides Sony Entertainment Access glasses, which resemble 3-D glasses. Captions are projected onto the glasses, and appear to float about 10 feet in front of the user.

OUR FAVORITE HEARING LOSS BLOGS
Ruth Bernstein
My Ears Had Whiskers
This story is about a caring, intelligent cat, who became an assistive listening and alerting system for her hard of hearing friend. Read more of this post.

Katherine Bouton
The Toll of Hearing Loss is Global
A new study published in the prestigious medical journal The Lancet offers an unblinking look at the tremendous burden of hearing loss worldwide. Half a billion people have disabling hearing loss, a number that is far higher than earlier estimates. This is not just a little trouble hearing the TV, this restaurant is too noisy hearing loss. This is disabling hearing loss. Read more of this post.

Shari Eberts
Why Should You Care about OTC Hearing Aids?
Hearing aids have been taking Washington, DC by storm of late. First was the President's Council of Advisors on Science and Technology report entitled "Aging America & Hearing Loss: Imperative of Improved Technologies," followed by the National Academy of Sciences report "Hearing Health Care for Adults: Priorities for Improving Access and Affordability." Both recommended a new category of hearing aids - one that could be sold over-the-counter (OTC) similar to how people buy aspirin or reading glasses. Read more of this post.

Gael Hannan
Speak Up, I've Got Hearing Loss
"Would you mind speaking up, I've got hearing loss." When you say this to a stranger, a barista in a coffee bar, for example, there's a list of standard replies you can expect. ("Wow, that sucks" is not a standard or acceptable answer.)
Read more of this post.

Mary Grace Whalen
 My Wake-Up Call
I've always been reluctant to take time off from my job during a busy period, but I was coughing, losing my voice, and wished I could just crawl into bed with a box of tissues. Being a stickler for attendance, I have gone as long as two years without taking a sick day. In retrospect, I'm not sure that was always a good thing. Read more of this post.

  Nancy Williams
Memory, Music, and the Cochlear Implant
As I start my car to drive to work, I hear in my head the opening measures of the Prelude of the Bach D minor cello suite. Pushing the CD into its slot, I hear those measures in the same key that played in my mind. After some 12 measures, however, I lose the melody; I hear dynamics, I hear vibrato and the sound of the bow sliding over the strings, I sense some rise and fall in pitch, but I no longer hear the key of D minor. Read more of this post.
DISCOUNT PRICES for
CAPTIONED THEATER PERFORMANCES through TDF
 
The Theatre Development Fund's Accessibility Programs (TAP) offers a membership service for theatergoers who have hearing loss or are deaf. TDF/TAP obtains special seating and provides captioning. There is no annual fee, but you must provide proof of eligibility. To see what shows are available - 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, now can find out everything they need to know to choose a show, buy tickets, and plan their trip to Broadway by visiting Theatre Access NYC. ITRE 
HONOR SOMEONE with a GIFT to the HLAA-NYC CHAPTER
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.

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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Hearing Loss Association of America - New York City Chapter
The Hearing Loss Association of America exists to open the world of communication
to people with hearing loss through information, education, support, and advocacy.
HLAA is a volunteer association for people with hearing loss, their relatives, and friends. It is a nonprofit, nonsectarian educational organization devoted to the welfare and interests of those who cannot hear well. Contributions are tax deductible to the extent allowed by law. We are a 501(c)(3) organization. Mention of suppliers and devices in this newsletter does not mean HLAA endorsement, nor does exclusion suggest disapproval.