Advocating

02760002_1
One in five people or 20% of the population in the USA has a hearing loss. Yet very few public places are hearing accessible. That’s in spite of the fact the ADA – the Americans With Disabilities Act – states most public facilities must be accessible to people with all disabilities.

Did you know there is no watchdog agency to make sure ADA requirements are met. It’s up to us to speak up and make sure accessibility is provided. Yet, we are not doing that. Are w e afraid to complain – or worse, “come out” about our hearing problems?

Ruth Bernstein, a Board member of HLAA NYC, has had a hearing loss for more than 40 years and has been advocating for accessibility all that time, with success. I recently had the good luck to watch her in action.

She went to Westfield’s Sistine Chapel exhibit at the Oculus at the World Trade Center. When she arrived, she tried the assistive listening system with headphones. UIMG_4839nfortunately, there were no neck loops, necessary for Ruth’s severe hearing loss and required by the ADA. Ruth enjoyed the beauty of Michelangelo’s paintings without the audio.

Ruth wanted Westfield to know there was a hearing access problem because the exhibition will be traveling across the USA. I accompanied her to their office, where she  spoke to the staff person at the reception desk. Rather than complaining loudly about the failure of the company to meet her needs, she told them how much she enjoyed the show. She then calmly explained her severe hearing loss made it impossible to use the assistive listening device without an audio loop and a script and asked for an introduction to the exhibition director.

Because she was so upbeat and positive, the receptionists bent over backwards to help her out. Ruth’s request has been passed on to the people in charge of the exhibition with a promise she will be informed of the arrangements for the upcoming exhibition at the Westfield Garden State Plaza September 1 thru October 15, 2017. Hopefully, there will be no need to file a complaint with the Department of Justice.

Learn from Ruth’s example. If you have favorite venues – museums, stores, banks, public meetings, hospitals – failing to meet ADA standards for hearing access, speak up!  If need be, remind them we are the ADA’s watchdogs. Start with a compliment, telling them how much you enjoy their venue. Then explain you had a problem hearing, what it was, and offer solutions with names of suppliers or resources, if possible. Thank them and mean it! And remember to follow up.

Check out our free introductory to the six-session workshop on Coming to Terms with Hearing Loss to learn more about advocacy and how to live your best life with hearing loss.

 

Connections; People with Hearing Loss

Little girl with CI-blur copy2
In the middle of a crowded baseball stadium I spotted a little girl with the same model of cochlear implant that I have …. A Cochlear Kanso. This is a brand-new model for Cochlear and so the odds of us running into each other are very small.

I couldn’t believe it. I had to get her attention.

Continue reading

What’s a Normal Life with Hearing Loss?

IMG_6337Recently I met a man with an obvious hearing loss. He used hearing aids and assistive listening devices, yet he missed parts of what I said. So I asked him if he’d like to learn about the local chapter of the Hearing Loss Association of America (HLAA). “No,” he said. “I’m not interested in giving more energy to my hearing loss than I already do. I would rather live a normal life.”Continue reading

Learning Languages with Hearing Loss

Lake Atitlán in Guatemala

Lake Atitlán in Guatemala

We all know how hard it can be when you’re speaking with someone whose accent is different from your own. It’s worse when you have a hearing loss. I’d bet that at least most of us have had such an experience. So just imagine how much more difficult it might be to get along in an entirely different language – one you don’t speak at all.

Continue reading

Music and Hearing Loss

IMG_5766 When I got my cochlear implants, music became intolerable. I couldn’t follow a melody even if I had heard it a millions of times before. And I definitely couldn’t sing on key or find harmony. Not only did I stop playing and singing, I finally stopped listening to music altogether. Many of us with hearing loss have had the same experience. For me, it was quite unsettling.

I grew up in a musical household, and don’t really remember learning how to play the piano; seems like I’ve done it since birth. My father and grandmother played piano duets and later, he played with me and my sisters. At dinner he played records of classical music, and we’d have to identify the composer – usually Mozart, Schubert, Beethoven, Brahms, and Mahler. We also sang, and though I don’t have a great voice, I can carry a tune and sing harmony. When my older sisters got married I asked for a piano instead of a wedding; Mom and Dad complied with my sweet Steinway upright, still given pride of place in my home for the past 47 years.

When my hearing was mild to moderate, music was still enjoyable to me. But as my hearing loss progressed to severe and then profound, music started sounding off-key and less pleasurable. I even told the piano tuner he needed to retune the instrument; it wasn’t done properly. After the second complaint, he asked if my hearing loss, and not the piano, might be the problem.

Of course it was.

Fortunately, I met Wendy Chang from Association of Adult Musicians with Hearing Loss. She immediately encouraged me to start playing piano again. She emphasized that the more you play, the more your neural pathways remember what music used to sound like and the more pleasurable it becomes. She advised me to start with a simple tune, then move to more complex music. You might find some of her recommendations helpful, so here’s my experience.

After a lot of excuses, I got up the courage to bring music back into my life by buying a speaker for my home. The sales rep suggested listening to the sound quality of various speakers. I really couldn’t distinguish the sound quality from one speaker to the next so chose the one with the pretty blue color. (Don’t tell anyone how I made the choice!)

I then connected my speaker to Apple music through my iPhone. I know there’s a zillion ways to listen to music, but this works perfectly for me. I knew that I needed to listen to familiar music, and what’s better, or more familiar, Christmas music! When I play it, I can follow the tunes and even sing along.

And here’s the amazing part of the story. At our Christmas gathering I broke into a song (never done that before) and was told I was singing on key. They even suggested that I join a choir.

I look forward to playing the piano again and more enjoyable musical experiences in the New Year. And I wish you all wonderful hearing experiences in 2017 and a wonderful year in all ways.

 

We’re planning a workshop called “Coming to Grips with Your Hearing Loss; How to Achieve Your Best Hearing Experience” as a pilot. Think of it as our “shake-down cruise.” If you’re interested in participating as a guinea pig, please let me know right away by clicking here. The pilot will be held Saturday, January 21st and 28th at the Unitarian Church in Summit, 4 Waldon Avenue, Summit, NJ from 10:00 to 2:00. A hearing loop will be used for better hearing and refreshments will be provided.

For those of you who don’t live in my area, we’ll be scheduling video conferences workshop where you can hear and see each other talking.

The deadline for Pat’s upcoming book, The Hearing Loss Revolution: How I Lost My Hearing and Learned a New Way of Living, has been pushed back to May 2017. If you’d like us to let you know the minute it’s available subscribe here.

Coming to grips with your hearing loss; How to achieve your best hearing experience

dr-ross-oct-2016Twenty years ago my hearing loss was already in the moderate-to-severe range. I used hearing aids but I still struggled to hear. That’s when my friend Beth, a social worker in a school specializing in hearing loss, mentioned that there were tools and organizations that could help me navigate my hearing loss with greater ease. But since I wanted as little to do with my hearing loss as possible, my reaction was to ignore her suggestion.

Continue reading

Travels with Hearing Loss: Auditory Fatigue

img_5373By the time you read this, I’ll be back home from an epic road trip I took driving from Anchorage, AK to Madison, NJ with Cobb, the wonder hearing service dog! A trip like that is always filled with experiences and adventures and believe me, I had my fair share of them. What I didn’t anticipate was learning something about my hearing that I knew intuitively but not consciously.

Continue reading