NEWS & VIEWS
January-February 2021
212-769-HEAR
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President's Report
by Jon Taylor
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Now that people have become more comfortable using Zoom, we have had very high attendance at our monthly chapter meetings. More than 100 people tuned in to our December presentation by Betty Hauck, a former professional musician who discussed her journey with hearing loss. For our most recent meeting, we again had 100 people in attendance to hear a discussion of hearing loss, balance problems, and dizziness, led by Dr. Maura Cosetti, Dr. Jennifer Kelly, and nurse practitioner Andrea Feghali. Not only has attendance at our meetings been very good, I am happy to report that many people have viewed the YouTube videos of our meetings, which are available on the programs tab of the chapter website, www.hearinglossnyc.org.
One of the reasons our attendance has increased is that we have reached out to members of other chapters, some of which also offer wonderful programs. Space does not permit us to publicize all the events hosted by other chapters, but there is an upcoming one I would like to mention. On February 16, the Rochester chapter is having a virtual meeting about cochlear implants. The talk will focus on what CI users can do to maximize their hearing success and may be of interest to long-time and new CI users, as well as people who are considering a CI implant. To register for the meeting, send an email to cochlearimplantgroup@gmail.com and ask for the Zoom link.
Thanks to the efforts of board member Nancie Collin, the Jewish Community Center will offer captions for many of its events. JCC is an important cultural resource in New York. Because it is possible that not all programs will be captioned, check first if there is a program that interests you. When an organization agrees to support our needs, it is vital that we show our appreciation by participating in its activities. If you do attend a captioned event, please thank the organization for providing captions.
In recent months many events have been virtual. National HLAA had to cancel the convention last June that was scheduled to take place in New Orleans. Although I was disappointed at missing the opportunity to visit the Big Easy, the virtual convention was a success. Despite some technical glitches, there were excellent presentations on a variety of topics. I was hoping to return to live presentations this June in San Diego, but unfortunately this will not be possible. However, the topic for this year’s virtual event—Hearing Care for All: Innovations in Extending the Reach of Hearing Care—is an important one. For more information about the June 25-26 virtual convention, click here.
Many people have been grappling with the issues of inclusion and diversity during the past year. Our chapter is no exception. To fully achieve our mission, we need to reach a larger and broader audience, with respect to age as well as ethnicity. HLAA has helped me lead a fuller life since I joined in 2016. I hope you believe, as I do, that we have a lot to offer the hearing loss community. We have been trying to spread the word through audiologists, social media, and articles in the West Side Rag. But word of mouth is important as well. If there are people in your life who are affected by hearing loss, please tell them about HLAA.
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SAVE THE DATES
HLAA-NYC Virtual Chapter Meetings
A Zoom link, with instructions, will be emailed beforehand
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Tuesday, March 2, 2021
6:00 to 7:30 PM
Kevin Franck, vice-chair of the Board of Directors of HLAA, will discuss where we are with OTC hearing aids. Factors the FDA is considering include who the aids are intended for, labeling, and place of sale. Other issues: What are interest groups, including HLAA, hoping to see in the regulations? What is filling the gap left by the FDA's failure to regulate?
Tuesday, April 6, 2021
6:00 to 7:30 PM
Michael A. Harvey, Ph.D., is a clinical psychologist in Framingham, MA, who provides training and guidance on mental health issues for people with hearing loss. A frequent contributor to HLAA's Hearing Life magazine, he is also the author of "Odyssey of Hearing Loss: Tales of Triumph" and "Listen with the Heart: Relationships and Hearing Loss."
Tuesday, May 4, 2021
6:00 to 7:30 PM
Three top New York City cochlear implant surgeons will discuss advances in cochlear implant technology, changing standards for qualification, auditory training after implantation, and assistive devices offered by each of the three FDA-approved manufacturers. The discussion will be led by Dr. Justin Golub, the chapter’s professional advisor, who is a surgeon at Columbia Presbyterian. He will be joined by Dr. Sandra Chandrashekur from Mt. Sinai and Dr. George Alexiades from Weill Cornell.
Tuesday, June 1, 2021
6:00 to 7:30 PM
We will announce the winner of the 2021 Albert B. Chen Scholarship, a $5,000 award for high school seniors with hearing loss. The winner will then give a short talk about how to give back to the hearing-loss community. Our featured speaker will be Rebecca Alexander, author of "Not Fade Away: A Memoir of Senses Lost and Found." Despite being deaf and nearly blind as a result of a rare variant of Usher Syndrome, Rebecca is an award-winning author, psychotherapist, group fitness instructor, disability advocate, and extreme athlete. She will talk about resilience in the face of adversity.
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In The New York Times
As More Deaf People Are Seen on TV, Others Want to Be Heard
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On January 27, the New York Times ran an article that began, "While filming the reality series 'Deaf U,' Rodney Burford wasn't too focused on any effect he and his cochlear implants would have on viewers. 'In my mind I was like, Yo, I'm really on Netflix,' said the 22-year-old cast member of the show, which zooms in on a group of students at Gallaudet University, the nation's only liberal arts university devoted to deaf people.
"Many deaf and hard-of-hearing people have welcomed the increase in visibility that deafness and hearing loss have enjoyed on TV lately." Read full article.
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Congratulations to Katherine Bouton, Ruth Bernstein, and Jerry Bergman, who are among the people who persistently and successfully lobbied for the opportunity to text—rather than call—911. Here's the information from the website www1.nyc.gov:
Text-to-911 is a reliable and safe way to reach emergency services in New York City. Text-to-911 is beneficial to people with hearing loss or speech disabilities, and those who can't safely call 911 (i.e. domestic violence or in a public place with an active shooter or some other dangerous situation).
Text-to-911 is free, works through short message service (SMS) with cellular carriers, requires a text or data plan, and is available in English and Spanish in the five boroughs. To use Text-to-911 efficiently:
• Enter 911 without spaces or hyphens.
• Let the operator know if you have hearing loss.
• Text the reason for your emergency.
• Include your full address, cross streets, and borough.
• Use complete words and sentences, not abbreviations.
• Don't text 911 in a group chat or send photos, videos, GIFs, or emojis.
• Answer all of the operator's questions.
• Don't text and drive.
See the Blogs section below for Katherine Bouton's post about the Text-to-911 campaign.
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January 5 Chapter Meeting
Shared Stories: Challenges from the Pandemic
Meeting Summary Plus Link to Video
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January meeting participants talked about the difficulties they've faced during the Covid-19 pandemic and how they’ve addressed those issues. The discussion was monitored by Katherine Bouton, the immediate past president of HLAA-NYC, a former editor of the New York Times, and the author of two books about hearing problems—Shouting Won’t Help and A Guide to Living with Hearing Loss.
THE CHALLENGE OF MASKS. Because masks muffle voices and make lip-reading undoable, Katherine commented, “Basically, my life during the past year has amounted to saying what, what, what over and over." She noted that FDA-approved clear masks are available, “but to be really effective, especially in medical settings, these masks have to be regular parts of the medical supply chain—hospitals, doctors’ offices, dentists’ offices. Absent that, it’s good to have a paper and pen available, and to be honest—that is, tell clinicians and others about your hearing loss.”
HEALTHCARE. Speaking up has its rewards. Chapter board member Toni Iacolucci, who has done considerable advocacy work in medical settings, commented, “Recently, when I arrived for a doctor appointment, the receptionist put on a clear mask. I said, ‘Wow, how did you know?’ The receptionist said, ‘You’re red-flagged in the electronic health-care record. We know you have hearing loss’—which is exactly what I’ve been working toward. On the other hand, not long ago a nurse handed me a clear mask. I asked, ‘Why are you giving me that?’ She said, ‘You have to wear it because you can’t hear.’ I said, ‘No, you have to wear it.’ So much education is still needed.”
TECHNOLOGY. During the discussion about technology, Katherine said, “Captions are more important now than ever. CART (Communication Access Realtime Translation) is an essential tool for people with hearing loss.” Captioning apps, which can be downloaded onto mobile phones, include Otter for Apple Phones and Google Live Transcribe for Android phones. InnoCaption, a free service, has live captioners and works on both iOS and Android phones.
ADVOCACY. Much of the advocacy discussion focused on improving access to online captioning. Indeed, a recent advocacy effort, spearheaded by chapter member and hearing loss blogger Shari Eberts, involves petitions aimed at persuading the online video conferencing platform Zoom to provide free captions. Close to 80,000 people have signed the petition. To add your name, go to the home page of the HLAA-NYC website, hearinglossnyc.org.
Chapter member Jerry Bergman, a longtime advocate for people with hearing loss, said he recently appealed to the Metropolitan Opera to caption its television broadcasts. Jerry also noted, “If television captions fail, the easiest way to get a prompt response is to file an online petition with the Federal Communications Commission." To do that, click here. Jerry concluded, "The bottom line: Everyone should speak up and ask for access under the law."
To watch a YouTube video of this meeting, click here.
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February 2 Chapter Meeting
Hearing Loss, Balance, and Dizziness
Meeting Summary Plus Link to Video
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Dr. Maura Cosetti, director of the Ear Institute at Mount Sinai Hospital, spoke about the causes, diagnosis, and treatment of dizziness and balance problems associated with hearing loss, as well as research and remedies aimed at addressing those problems. She was joined by vestibular therapist Jennifer Kelly of New York Eye and Ear infirmary of Mount Sinai and nurse practitioner Andrea Feghali.
In Dr. Cosetti’s words, “Standing is a basic human function that most of us take for granted, but in reality it's a complex perceptual motor process. We have to sense position and motion, then we need to process that sensory information to determine orientation and movement.” According to Dr. Cosetti, people with hearing loss over the age of 65 have a 63 percent increased risk of falls compared with normal hearing peers. Some studies suggested that the more hearing loss a person has, the greater risk of falls.
Dr. Kelly noted the importance of telling your health care practitioner what you're experiencing to determine if you have vertigo—which feels like the room is spinning—or if you have dizziness. Dizziness is typically a swimming sensation, a foggy feeling, or just an overall difficulty with focusing.
What can you do if you’re experiencing dizziness or balance problems? As per the speakers, shoes that are not the right size, flip flops, and house slippers that have no backs on them place people at risk for falls. Home hazards include broken or uneven steps, throw rugs, and clutter. Ask your doctor to evaluate your risk for falling. Talk to your pharmacist. Many medications can make you dizzy or sleepy. Do strength and balance exercises, including Tai Chi. Have your eyes checked at least once a year. Bifocal, trifocal, or progressive lenses tend to distort depth, which can be a problem for people who have a history of falls or dizziness. Grab bars are important inside and outside your tub or shower. And make sure your residence has sufficient light.
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Advocating for Clear Masks
One Doctor at a Time
by Ellen Semel
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I visited my primary care doctor recently and was happy to see her and her associate wearing clear masks. The doctors on her team who see frail elderly homebound patients also wear clear masks and communication has greatly improved.
Weeks back I sent my doctor a message with the contact information for the companies that manufacture and distribute clear masks: The Clear Mask and The Communicator Surgical Mask by Safe 'N' Clear. Both have a see-through area around the mouth. I suggested she order some for the entire Mt. Sinai Geriatric Department.
Of course, when others wear clear masks, it's easier for those of us with hearing loss to comprehend what is being said. Face masks cause speech to lose from 3-12 decibels. Those of us with hearing loss have a hard enough time getting all the words when someone is facing us without a mask; it is much harder to communicate with people when they are wearing masks.
While we know that clear masks help us communicate better, it is not on the radar of those with good hearing. So it's our responsibility to be sure our doctors and dentists know about clear masks. It is important for us to request the clear masks when we schedule healthcare appointments. If the person scheduling your appointment is unaware of clear masks, contact the doctor’s affiliated hospital Patient Services Department to make the request. Also, be sure that your doctors list your hearing loss in your electronic health records so other doctors will know about your hearing loss.
Here’s to clear masks becoming a household word!
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Our Favorite Hearing Loss Blogs |
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Ruth Bernstein
Hearing Access Ambassador Welcomes 2021
The new year, an easier and healthier one I hope, has arrived. Despite the pandemic, I have been busy with many activities as part of my role as a Hearing Access Ambassador. As an Ambassador, I know that asking for help is a good thing because I get access to the activities I enjoy. For many people, asking for help is very difficult because they are embarrassed and/or afraid to reveal their hearing loss. I have been fortunate because, in the early years of my hearing loss, I was part of a CHC support group for working people. There I learned how, when and why to ask for help, skills I continue to practice to this day. Read more of this post.
Katherine Bouton
Emergency 911
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 Eberts
Alerting Devices for People with Hearing Loss
The fire alarm goes off or the doorbell rings, but you cannot hear it. Maybe the baby is crying or the phone is ringing, but you cannot tell. For most people, an auditory alert is all that is needed for them to take action or seek safety based on the sound, but for people with hearing loss, this is often not possible. Additional alerting methods are required. Luckily, many options exist and new ones are being developed all the time. Read more of this post.
Gael Hannan
Explaining Our Hearing Loss to Others
Hearing loss is a two-sided problem. Having it, is on one side. Effectively explaining it to others is on the other. We wonder—why is it so challenging for them to understand the way hearing loss manifests itself in us? It’s not that we haven’t shown our audiogram to the people who need to know—the people with whom we communicate the most, the people we love or the people we work with. We have shared our diagnosis with them and explained the technology that we hope will help. Read more of this post.
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Join HLAA "Closed" Facebook Group
Connect with HLAA Members from 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 a 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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