Hear & Beyond:
Live Skillfully with Hearing Loss
We are excited to have Shari Eberts and Gael Hannan as our guests this week, both of whom have written books on hearing loss! Both are passionate hearing health advocates, writers, and speakers on hearing loss issues. At the beginning of the pandemic, Shari and Gael began collaborating on a book, a “how-to guide they wish they’d had at the start of their hearing loss journeys.” Hear & Beyond launched on May 3rd.
Shari Eberts is the founder of Living with Hearing Loss, a popular blog and online community for people living with hearing loss and tinnitus, and an executive producer of We Hear You, an award-winning documentary about the hearing loss experience. She also serves on the board of directors of Hearing Loss Association of America. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story she will help others to live more peacefully with their own hearing issues.
Hearing Loss Books
In collaboration with the Ida Institute, Shari has authored an e-book, A Primer on Person-Centered Care From the Patient’s Perspective, encouraging Hearing Care Professionals (HCPs) to:
- Partner with their patients
- Make their office hearing loss friendly
- Embrace creativity
- Think beyond the technology
Gael Hannan writes a popular weekly blog as the Better Hearing Consumer for Hearing Health & Technology Matters. Also, as a leading international hearing health advocate, Gael has created awareness campaigns, school programs, and award-winning presentations that help people better understand life with hearing loss, including her ground-breaking one-woman show Unheard Voices. Gael’s critically-acclaimed book The Way I Hear It: A Life with Hearing Loss, written as part memoir and part survival guide, has helped readers around the world to embrace their own hearing challenges. Gael has profound hearing loss and is bimodal, using both a hearing aid and a cochlear implant.
Part of the reason we started Hearing Loss LIVE! was to spread awareness about the Hard of Hearing (HoH) community, our needs, and the accommodations that give us full and equal access. There is no one size fits all for the HoH, but a common thread in our experience is the lack of practical information on how to gain the knowledge, skill and confidence to live well with hearing loss. Like Shari and Gael, we want others to have immediate access to the information that we wish we’d had at the start of our journeys.
Person-Centered Care is one important way for people with hearing loss to access the things they need to live well. Part of our HLL! message to audiologists, and other HCPs, is that patients and clients who are more knowledgeable about their hearing loss are more comfortable and confident, and as a result will see greater benefit from their hearing devices.
A Shift in Perspective
Michele: Some of us don’t find benefit from technology. My own experience with hearing aids (HAs), and most assistive listening devices (ALDs), spanned more than three decades of frustration and disappointment. Once each HA trial was exhausted—I tried HAs every few years from age 21 through my 50s until I reached the profound level—no other solutions were offered by my audiologists, leaving me to figure out how to live well with hearing loss on my own.
My shift in focus from hearing better to communicating better came from not having a choice. I either had to learn to communicate without hearing, or accept dependence. The latter simply was NOT an option.
It’s More About Communication
Over time, I learned you don’t have to hear to communicate. And, you don’t even have to share a language to communicate. Decades of solo travel around the world forced me to become an effective and flexible communicator and self advocate.
Through early adulthood, I had it in my head that I was simply a hearing person who didn’t hear so well. My experience didn’t seem as valid as those who wore hearing devices or were a part of Deaf culture. I also learned an unhealthy diffidence from a young age, and not just in relation to hearing loss. Putting others’ needs and feelings—even strangers—before my own meant I didn’t ask for help or accommodation, because I didn’t want to inconvenience or burden others.
With each hearing dip it became necessary to hold my attitudes, mindset, and accepted social norms up to the light to see what no longer fit or served me well. I had to make some big changes in order to live the life I wanted. Many of those changes are mentioned in Hear & Beyond. I learn something new whenever others share tips and tricks from their hearing loss journey. Thank you, Shari and Gael!
Making Change Happen
Julia: How does change happen? By combining efforts with others. Sharing our experiences with hearing loss helps. Sharing helps with the grief and the feelings of loneliness. It helps us to talk with our family members. It just helps. Every time we come together and share we help one more person. Hearing loss stigma should be a thing of the past. It is time to step up and let our voices be heard. Let’s take the time to take our shared experiences and hold out a hand for those who will someday walk the same path. It was definitely time for a book on navigating life with hearing loss! Well done ladies!
Reading as Therapy
Chelle: Books are my go-to therapy and I’m an avid reader. In 2009, I scoured bookshelves and Amazon for books on hearing loss while I in my deep dark hole of hearing loss. Looking for a way out this mess, I read a lot of books. Nothing was quite what I was looking for. I have not had a chance to read their book Hear & Beyond yet, but I will soon. (Oof, I’m the kind of person who has 5 books going at any given time. At some point, I feel I must finish one or two before adding another to the mix.) During our podcast they said they wrote the book they wish they had when they were exploring hearing loss. I’m sure it’s something I’d have appreciated thirteen years ago.
I also have a Kindle with many books, several of which are also related to hearing loss. That’s how I’ll pick up Hear & Beyond. Years ago I bruised my shoulder flying a long distance with a book bag carrying 5 books, those days are over for me. A Kindle is much easier to haul around when traveling, which I do often.
Hearing Loss Advocates
It’s fun being in the same place with other advocates, discussing hearing loss and advocacy. I think we all have a lot to say and we could go on passionately for hours discussing options and ideas. Having Gael and Shari with us for about an hour was a real treat, be sure to watch our podcast with them coming out on Monday the 13th.
Here are some other noteworthy authors for hearing loss.
- Katherine Bouton, Shouting Won’t Help: Why I – and 50 Million Other Americans – Can’t Hear You.
- Arlene Romoff, Listening Closely: A Journey to Bilateral Hearing. She shares her hearing loss and cochlear implant journey.
- Making Music with Hearing Loss: Strategies and Stories by Willa Horowitz, AuD and Wendy Chung