Her Life, Her Work and Lessons Learned
HLAA-NYC Board member Ruth Bernstein is a longstanding friend of CHC who, for the past 15 years, has written extensively in the CHC blog about her adventures as a hearing access ambassador. Our ties actually go back decades to when she was a founding member of advocates for better communication, an organization closely allied with CHC (then known as the League).
For more than 40 years, Ruth has advocated for hearing access on behalf of herself and others so that the public and leadership of private and government institutions would gain an understanding of how critically important hearing accommodations are to people with hearing loss. Her fierce commitment to advocacy is matched only by the kindness and humor she deploys every step of the way as she changes the world for the better.
On the occasion of Ruth Bernstein's 90th birthday—taking place August 3rd—here's a special Q&A celebrating her life, her work and lessons learned. The interview, conducted over Zoom and email, was facilitated by Nancy Nadler, CHC's Deputy Executive Director and an ardent member of the Ruth Bernstein fan club.
Interview with Advocate Ruth Bernstein
Nancy: Tell me about your background—tell us your story.
Ruth: I was almost seven when I arrived in New York in May, 1940. I’m a WW II Jewish refugee. I was born in Holland, my mother was Belgian and my Dad was German.
I grew up in the New York City public schools and graduated from Hunter College with a B.A. in Psychology and Early Childhood Education. After my fourth child was born, I went back to school for an M.A. in Speech Pathology and Audiology at Teachers College, Columbia University. My plan was to be a speech therapist in the Teaneck school system so I could work in sync with the children’s school calendar. As part of our speech therapy and audiology training, we learned to give audiograms. The student who tested me discovered I had a hearing loss. I was not surprised because I have a genetic hearing loss that now spans four generations.
Over fifty-four years, my hearing loss has progressed from moderate, when wearing two hearing aids and using assistive devices was sufficient, to profound, requiring a cochlear implant (CI) in my left ear, a powerful hearing aid in my right ear and lots of assistive technology. Throughout this long, interesting journey, I have been very lucky because I have always been able to ask for help and had a cheering squad of family, friends, professionals and volunteers to guide and support me.
Hearing loss was part of my life as a wife, mother, family chauffeur and speech therapist. After I was diagnosed with hearing loss, I became an administrative assistant and then a professional convention and meeting planner.
Now I am retired, a great-grandmother three times, grandmother, and mother. I am a painter, photographer, writer, retired Central Park gardener and Metropolitan Museum of Art volunteer. I write a consumer blog for CHC and have had articles published in the Hearing Health Foundation's Hearing Health Magazine. I counsel and support people on their hearing journeys. Woven through all of this is the advocacy work I do with the Center for Hearing and Communication, the Hearing Loss Association of America New York City Chapter, and DOROT.
Nancy: How did you become an advocate for people with hearing loss?
Ruth: I became an advocate for people with hearing loss when I was working as a professional meeting planner and realized how difficult it was to arrange hearing access for myself at conventions. I decided I needed to make the process a lot easier.
Throughout my hearing loss journey, I learned to cope by working with other people with hearing loss. I attended the WISE support group at CHC (then the League for the Hard of Hearing) for working people with hearing loss, where I was taught how to deal with difficult office communication and political situations.
I was Volunteer Chair of CHC’s Mentor Program which, with the CHC staff and the NYC Board of Education, brought together high school students and mentors to share coping techniques in a hearing business world. The group helped the students with hearing loss understand the possibilities in the work world by introducing them to mentors who worked in many different positions—optician, accountant, doctor, teacher. The students learned how to write résumés and role-played interviews. Everyone benefited from their interactions.
I became a founder and member of the advocates for better communication (or a.b.c.), a partner organization of CHC's that advocated for access on the city, state and national level. We focused on access at movies and theater performances, libraries, medical offices, travel and daily activities. When a.b.c. disbanded, I became a member of the Board of the Hearing Loss Association of America New York City Chapter. My focus is on captioning, travel and museums.
I work with the Museum of Modern of Art, the Metropolitan Museum of Art, the Museum Access Consortium, the New York Public Library Accessibility Committee and the Metropolitan Transit Authority.
By participating in these activities, I share my knowledge of the needs of my hearing loss community, which is very much appreciated. I am, in small measure, returning the help I have received and continue to receive from everyone who supports me.
Nancy: In your advocacy work, what has been most surprising?
Ruth: The most surprising and frustrating thing for me is the reluctance of people with hearing loss to identify themselves, get the help they need and ask for access.
The most heartwarming is the willingness of people to learn how to help those with hearing loss in many different situations.
Nancy: Can you describe the changes you've seen in technology and the impact they've had?
Ruth: When I started wearing hearing aids in the 1970s, they were big, clunky analog aids. My hearing aid dealer had a large box he put them in to test them. Today, the aids are much smaller and my audiologists program and adjust the digital hearing aid and cochlear implant on computers. During COVID-19, my audiologist was able to program a new hearing aid remotely, something that was not possible even five years ago.
Visit the FDA website to learn more about hearing aids.
Hearing aids and CIs have technology that allows them to connect wirelessly to smartphones, computers and TVs.
In the “old days,” assistive listening devices were big, bulky and required lots of battery power. Today, all the equipment has shrunk to a manageable size and requires a minimum number of batteries or is self-charging.
Best of all, there are apps that can be downloaded onto smartphones, computers and other devices that allow them to caption conversations, meetings and
other activities. My mantra is, ”If it’s verbal, it has to be visual/captioned."
My Apple Watch (I call it my Dick Tracy watch because it can be used as a phone) calls 911 if I fall and do not respond within a minute or two. The watch knows where I am and whom to notify if I am hurt. As a ninety-year old who lives alone and has a hearing loss, I feel a lot safer because I know I will get immediate help in an emergency. My family and friends also appreciate this feature.
This means I feel safe doing anything I want to do. By planning ahead and asking for the accommodations I need, I make sure the activity will be accessible to me.
Nancy: What is the most important thing you want people to know?
Although it can be frustrating, annoying, emotionally upsetting, and physically exhausting, hearing loss is not a fatal disease. People with hearing loss are not deaf, dumb or stupid. We just don’t understand speech clearly.
A sense of humor helps a lot in defusing the challenges of hearing loss.
There are 48 million people in the United States with some degree of hearing loss. That number grows every year. The prevalence of hearing loss is twice as common as diabetes and cancer.
Hearing loss is an invisible disability. Many people choose to be invisible because they are embarrassed and do not want people to know they can’t hear well. Ask yourself whether you prefer to get hearing aids and be able to hear better or struggle to hear, risk losing your job or relationships because you are not hearing and allow the stress of not hearing to affect your overall health.
Recognize you have a hearing loss and ask for help. Hearing loss can be treated. There are multiple ways of helping people with hearing loss and lots of professionals and volunteers who are qualified and willing to do so.
My advice: Get hearing help! You will be happy you did.