A conversation with Shari Eberts, founder of the ‘Living With Hearing Loss’ online community and hearing health advocate (BSL)

Hi Shari, so firstly, can you introduce yourself to our readers?

Hello! I am Shari Eberts, the founder of LivingWithHearingLoss.com, an online community for people living with hearing loss and tinnitus. I am also the executive producer of We Hear You, an award-winning documentary about the lived hearing loss experience and the author of Hear & Beyond: Live Skillfully with Hearing Loss (co-authored with fellow advocate Gael Hannan). I live in New York City and have been wearing hearing aids for almost 30 years.

Could you tell us a bit more about your own deafness?

 I identify as a person with hearing loss. I first noticed my hearing loss in my mid-20s when I was in graduate school. Pretty quickly into the first semester I started missing things in class and occasionally the whole room would erupt in laughter leaving me looking around trying to figure out what was so funny. I knew what the problem was. I was losing my hearing.

The original diagnosis was adult-onset mild bilateral hearing loss, probably of genetic origin given my family history, but no specific gene(s) have been identified.

My hearing loss is progressive and is now in the moderate range for most frequencies, although slightly better in high frequencies, which is unusual and hard to fit (according to my audiologist).

Can we talk about deaf identity – is your deafness something you’re comfortable with? What has your journey been like?

At the start of my hearing loss journey, I was highly stigmatised by it. Growing up I had watched my father do almost anything to avoid disclosing his hearing loss and had internalised the idea that hearing loss was shameful and something to be hidden.

For many years, I followed in his footsteps, telling almost no one about my hearing loss and wearing my hearing aids only when absolutely necessary. I remember sneaking them in before important meetings at work and avoiding clients that I couldn’t hear well which was not the most productive strategy.

Socially, I was doing the same thing. For friends I could hear well I was always available, but for those with softer or more difficult voices, I made excuses. I was heading down the path of isolation I had seen my father walk.

But once I had children everything changed. I saw them watching me do the same things I had watched him do and I realised I was passing on the same stigma. I knew something had to change so I made the choice to finally accept my hearing loss.

I began wearing my hearing aids all the time and teaching my family and friends how they could help me hear my best. And now I am an advocate for people like me. My children are watching me still, but now they are learning the communication skills they may need should they develop hearing loss themselves as adults.

What do you regard as the biggest barriers in todays world?  

The world is not set up for people with hearing loss. Everywhere we go there are ramps for wheelchair users and this is wonderful and exactly how it should be. I wish we saw the same level of access for people with hearing loss. Imagine walking into any public space, meeting, concert, lecture, or other venue and having captions or a hearing loop built into the infrastructure. This would be a dream come true for people with hearing loss. I hope we will get there one day.

Poor accessibility can be especially frustrating in a healthcare setting. Our documentary, We Hear You, shares the story of one woman’s struggle for communication access when she was caring for her brother who was battling cancer. You can watch the clip here.

I felt similar frustrations when my teenage son had surgery last year. Despite being reminded to speak clearly and slowly numerous times, the doctors did not seem to take my needs as a person with hearing loss into consideration. This should not be the case, particularly in a medical setting where accurate communication can be the difference between life and death.

What would you like to see improve or change?

Unfortunately, even today, hearing loss is often shrouded in stigma—associated with being old or slow. I would love for these attitudes to change, both in the mainstream and within ourselves. While some people have pride in their D/deafness, many others struggle to accept it, keeping them from seeking out the communication access they need to live well. This was the case for me for many years.

Reducing stigma will require helping the general public to better understand the challenges that people with hearing loss face with communication and teaching them how they can be part of the solution. With understanding, acceptance grows and stigma fades.

Do you feel there is enough representation in the mainstream eye? 

Representation is so important. Strides have been made in recent years to feature more of the Deaf experience in mainstream media (i.e., CODA), but portrayals of people with hearing loss (i.e., the Sex and the City reboot) still often paint hearing loss in a negative light. More accurate portrayals would help break down stigma and provide more positive role models for people with hearing loss.

What sort of response have you had to your work/writing? 

My work is so rewarding because it gives me the opportunity to meet other people with hearing loss from around the world. My blog attracts readers from around the globe and my travels for speaking engagements have taken me to several countries as well.

As people with hearing loss, we can learn so much from one another. I hope that by sharing my story and tips I will help others live more comfortably with their own hearing issues too.

As for reviews, our film We Hear You has been incredibly well received, winning Best Film on Disability in the June 2021 awards of the Cannes World Film Festival and an Award of Merit for Disability Issues at The IndieFest Film Awards. Hear & Beyond has also received terrific reviews from both people with hearing loss and the broader hearing care/audiologist community. I am so grateful that our work is touching so many lives.

Do you have any particular career highlights or memorable experiences so far? 

I am very proud of the work that I and other advocates did during the pandemic to convince Zoom to make its auto-captioning feature available for people with hearing loss at no cost.

My contribution included a Change.org petition that received more than 80,000 signatures from people around the world and a Washington Post op-ed that got the CEO’s attention.

Helping people with hearing loss stay connected during the pandemic was incredibly rewarding, but more work is needed to expand communication access across all settings.

Can you tell us about your new book? What inspired you to write it?

Hearing loss does not come with an operating manual, but it should. Hear & Beyond: Live Skillfully with Hearing Loss is the book that co-author Gael Hannan and I wish we’d had at the start of our hearing loss journeys.

Most people diagnosed with hearing loss don’t know much about it and may not know anyone else with hearing loss that can show them the ropes. It can be a lonely and frustrating experience as we work to put the pieces together on our own. It can take years. It certainly did for Gael and me. We wrote the book to share what we have learned so that others can live better too, and more quickly.

What’s next for you? 

Advocacy work never ends! I look forward to continuing to advocate for people with hearing loss through writing, speaking engagements and film screenings. My goal is to raise awareness and impact change with a variety of audiences, including mainstream ones.

Hearing loss advocacy is my passion. I hope my work will help break down hearing loss stigma, inspire other people with hearing loss to live more skilfully with it, and help drive societal change that improves communication access for people with hearing loss across all settings. There is still so much work to do.

Do you have any advice to share with deaf/hard of hearing people who may be budding authors? 

Go for it! The more voices telling the hearing loss story, the better. My advice is to share what you know best—you and your experiences. Personal stories have the singular power to inform, educate and spark change. Start small with a blog and grow from there! Good luck to you!

Shari Eberts is a hearing health advocate. She is the founder of Living with Hearing Loss, a blog and online community for people with hearing loss, and an executive producer of We Hear You, an award-winning documentary about the hearing loss experience.

Her book, Hear & Beyond: Live Skillfully with Hearing Loss, (co-authored with Gael Hannan) is the ‘ultimate survival guide to living well with hearing loss’. Shari has an adult-onset genetic hearing loss. Connect with Shari: Blog, Facebook, LinkedIn, Twitter.