Executive producers of hearing loss documentary tell their story

(From Spring 2022 Convey magazine)

By Jennifer Snelling

“We Hear You” is a documentary about hearing loss, which impacts 430 million people worldwide. The film shares the lived experiences of several individuals dealing with hearing loss. Named Best Film on Disability in the June 2021 monthly awards at the Cannes World Film Festival, the film was executive produced by Holly Cohen, Shari Eberts and Roxana Rotundo.

Cohen was diagnosed with bilateral hearing loss in her 20s. She is past president of the Hearing Loss Association of America – New York City Chapter, and on the board of Theatre Development Fund (TDF).

Eberts has adult-onset genetic hearing loss. She is a hearing health advocate and founder of “Living With Hearing Loss,” a blog about her experiences. She has served on the board of Hearing Loss Association of America since 2015. Eberts and Gael Hannan co-authored the upcoming book, Hear & Beyond, Live Skillfully with Hearing Loss, set for release in May.

Convey spoke with Cohen and Eberts over Zoom using closed captioning.

What are some of the challenges you’ve experienced with hearing loss that you wish people better understood?

EBERTS: Hearing loss is often misunderstood if you have not experienced it yourself. People don’t understand that communication takes a lot of effort. It can be exhausting for people with hearing loss because we’re hearing only parts of the story. If we have captions to fill in some of the blanks, that’s very helpful, but in a lot of situations we might not. There is a lot of mental processing that’s going on. We describe it in the film as like a game of “Wheel of Fortune,” where some of the letters are filled in and other letters are blank. We’re trying to make sense of that while trying to understand the context of the conversation.

Once we do that, we’re not done because then we need to reply. Hearing loss can be so tiring. It can make people want to avoid communication and retreat and isolate themselves. That’s one big danger of hearing loss.

COHEN: [In the film], we talked about being comfortable talking about your hearing loss and letting people know that you have hearing loss. When I got my hearing aids in my early 30s, I didn’t tell anybody that I was working with that I had hearing loss. I am sure they knew. People think that their hearing loss is a secret, but it’s usually not.

When I first meet someone, I always say if you’re standing behind me and talking to me, I’m not going to hear you. It’s not that I’m ignoring you. Part of it is being comfortable sharing the fact that you have hearing loss and then teaching people some communication best practices to communicate with us.

EBERTS: One other thing I would mention is about hearing aids. There is a misperception that hearing aids fix your hearing loss because people are used to glasses. When you put on glasses, for most people, everything sharpens as if you could see normally. Hearing aids don’t work like that. Mostly they make things louder. They do make some sounds crisper and clearer, but never in the same way that normal hearing sounds. If you go into a loud space at a restaurant, for example, the hearing aids make all the sounds louder. They can’t read your mind and say I just want to hear Jennifer’s voice and Holly’s voice. They don’t know that the plates and the cutlery and all those sounds are not important. Hearing aids are great tools and I’m so grateful for mine, but they do not fix your hearing loss entirely.

That can be misunderstood and frustrating for our communication partners. They may say “Just turn your hearing aid up,” or “Why aren’t you trying to understand?” That doesn’t make sense if you understand more about how hearing aids work.

COHEN: Different people have different voice tones. We may be hearing that they are talking, but we aren’t understanding all the words clearly enough. And when we don’t hear a couple of the words, we miss the context. Then, if we speak up and say, “I didn’t catch that,” or “Can you repeat that,” or ask people to reframe it in some way, sometimes by using a different word, we might hear it better.

There’s a lot of embarrassment and a lot of vulnerability with hearing loss. We know people who were diagnosed maybe at 5 or 6 years old, but their parents were so uncomfortable that they did not get them hearing aids until they were 12 or 13. That has huge impact because the social interactions were very different and more challenging than they needed to be.

When you say “sometimes asking people to use a different word.” Is that because some sounds are easier to hear than others?

COHEN: Yes. Sometimes it’s just in the context of what they were saying. If we didn’t hear the word, we didn’t get the meaning of what they were trying to say. When they use a different word, it’s “Now, I understand.”

Family and friends get it because they’re aware of our hearing loss so they can sometimes tell if we didn’t hear something. That’s also because we’ve tried to, as much as we can, normalize our hearing loss. This is real for us.

EBERTS: Everybody’s hearing loss is different. I have very good high-pitch hearing, which is unusual. For most people with hearing loss, the high pitches are what deteriorate first. For me, that’s beneficial because a lot of important speech sounds like an S or a T are higher pitched sounds.

There’s something called a speech banana that they put on your audiogram. It shows where the different speech tones are relative to frequency as well as decibel level. For each person, depending on their audiogram, certain sounds in a word will be easier or harder to hear. If you rephrase it, like Holly was saying, it might move the word into different letters that are easier for you to hear versus letters that are harder for you to hear.

COHEN: You can see the difference between putting glasses on and you can see clearly. With hearing aids, it’s a whole different world.

So much of this information is eye-opening for people who have not experienced hearing loss. Can you talk about what inspired you to make this documentary?

EBERTS: There were two primary reasons that we made it. We were all really struggling in the pandemic and the hearing loss community was feeling so isolated and alone. It was an opportunity to bring the hearing loss community together, to strengthen our bond, and help us feel better represented as a group of people. We wanted to help people feel like they weren’t so alone with the challenges of hearing loss, and to see that they’re part of a community.

During the pandemic, the producers of the documentary hosted several virtual meetings for the hearing loss community. Many of us are members of Hearing Loss Association of America (HLAA). HLAA has chapters throughout the country that meet monthly (used to meet in person pre-pandemic) and all of a sudden that was taken away so we created virtual meetings to fill that gap. People from around the world came. We had 700 or 800 people at several of them. It inspired us to create a unifying way to bring the community together.

Reason No. 2 was to raise awareness in the mainstream about hearing loss. In the pandemic, people with hearing loss struggled so much with the masks, because they took away our superpower of lip reading.

All the things that we’ve been talking about are still misunderstood. People in the mainstream media often see the deaf experience, the deaf cultural experience, with people who are using sign language to communicate. It is a whole different experience.

We wanted to shine a light on the experience of hearing loss. Less than 5% of people with hearing loss consider themselves deaf and use sign language. Most people with hearing loss do not sign. It’s not as easy to portray because it’s an invisible disability. We wanted to shine a light on that larger population and raise awareness in the mainstream.

We also wanted to use this as an opportunity to connect with the professional community, and that’s why we’re so excited to have the opportunity for this article, because the hearing care professionals are our partners in helping us live better with hearing loss. We believe that if they have a better understanding of the lived experience of hearing loss, it can only benefit both sides in terms of providing good care.

COHEN: There’s been nothing like this film before. I had so many friends during the pandemic ask me if I saw the movie “Sound of Metal.” It’s about a musician who has sudden hearing loss. They did a good job with the sound experience, illustrating what he was no longer hearing. But his experience with deafness is not the hearing loss experience. There was also a more recent movie called “CODA,” which is about a young woman living with her family members who are deaf.

We wanted to share our stories – hearing loss stories. We’ve heard from so many people in our hearing loss community saying, “Thank you. I’ve never seen anything on the screen before that talks about what we are living with.”

Right. Most people don’t know someone who is deaf, but almost everyone knows someone who has hearing loss.

COHEN: Right, or they may even know people that DO have hearing loss, but who haven’t told them yet. Shari and I have been hearing from a lot of people since this documentary came out who are now willing to say they also have hearing loss. They felt a little bit more comfortable after watching the documentary. It’s OK to ask for what you need to be able to live better, to communicate better. By the way, I really liked the title of the magazine, Convey. It says what you’re trying to do.

Thank you. You mentioned earlier the superpower of lip reading. Can you say a little more about how COVID impacted that ability with people wearing masks?

COHEN: Here’s the silver lining of COVID – there has been all of these [on screen] interactions with people, including you, today. Now, we can talk on the screen, we can see you face to face. We can highlight your picture in speaker view to be able to see you close up and read the captions.

In real life, going into a store, people are wearing the masks so we’re not seeing facial expressions. We’re not seeing their mouths move, plus the mask muffles the sound a bit. That’s made it really hard when we’re out.

We have apps. Are you familiar with Otter? It’s a speech-to-text app on the phone that we can enable when we’re out so we can read what people are saying. It’s fairly accurate. Now, some people are nice enough and they pull down the mask for a minute. But masks have been the biggest challenge.

EBERTS: It also makes you feel less confident in going out and about. I know for me, I felt like I was living well with hearing loss. I was coping well. I had skills that I used, and I could feel confident about going into so many situations.

Then when the pandemic hit, a lot of those tools were taken away, for example, the speech reading disappeared. Now, people were behind plexiglass barriers. Even going to the store became a very challenging experience. Going to the doctor is always a challenging experience, but now with COVID, with the masks and sometimes the double masks, it was even harder. I’m not saying that we shouldn’t all be wearing masks, we should be, but it does make it very challenging to communicate for people with hearing loss.

Emotionally, I think people with hearing loss have lost some confidence. It became even more isolating for us because we already tend to isolate ourselves if we are battling stigma and we don’t want to self-identify, but now we have that terror of wondering how we are going to cope in this or that situation. That was part of the inspiration for the documentary – to show people that they’re not alone in struggling through the communication challenges of the pandemic.

A couple of the people interviewed in the documentary have cochlear implants. What should we know about their experiences?

COHEN: Toni [Iacolucci] is the woman whose brother was in the hospital. She was living in the hearing world, while not hearing much speech. She speech-reads well. When we were making the documentary, she was considering having a cochlear implant (CI). She later decided to go ahead, and it was activated last February.

When a cochlear implant is first activated, typically, the person can’t hear words clearly. The brain must catch up with what it’s hearing. Most people work at learning to hear again (or for the first time) by engaging in aural rehabilitation, like listening to a book on tape so that they can practice their hearing. On activation, it was Toni’s experience to hear speech almost immediately. It’s been life changing for her.

EBERTS: In the documentary, Toni didn’t have the implant yet. Roxanna Rotundo, who’s one of the other executive producers, she has two cochlear implants. We tried to share that experience in the film as well.

It was so interesting in the documentary hearing them talk about making the decision to give up any hearing they had in order to have the implants. That must be an agonizing decision to make.

COHEN: Yes, Roxana says that in the documentary. We hear that from others, too. We call them our “hearing loss friends.” We have met a lot of people who share similar stories. To make that decision is a big decision.

In your experience, or from what you’ve heard from others, what are some of the elements of hearing loss that speech-language pathologists and audiologists may not fully understand?

EBERTS: That’s a great question. Gael Hannan and I are writing a book. We’re trying to fill in the pieces that we think that the speech-language pathologists and audiologists sometimes miss. A lot of it is the lived experience, the emotional journey that people go through with hearing loss. It’s a tremendous change of lifestyle and a tremendous difficulty in terms of communicating and doing everyday functions. It takes people a lot of time to go through that. In our book, we call it the hearing loss journey.

We debate with ourselves and are in denial, then eventually we must accept it. An important step is going and getting that verification. That’s where the professional community often first comes in. They test our hearing and verify that we do, in fact, have a hearing loss and what degree, and what type. Then they help us decide how to treat it.

A lot of what we wanted to communicate is the emotional aspect of hearing loss, because it’s not like, OK, we’re going to get a hearing aid and we’re going to be able to communicate. It’s not that simple. It’s a change. You must find it in yourself to accept that this is your new reality, accept it, and not feel shame and stigma about it so that you can request help from others. We’re definitely not helpless, but we do need assistance from others to make sure that communication goes well, in both directions.

COHEN: Following up on what Shari says, which is so critically important, a lot of our experience in going to an audiologist is first we have a hearing test, and they prescribe the hearing aid. Then, we pick up the hearing aid and then they adjust the hearing aid and maybe we come back three or four times to do little tweaks.

I’ve been wearing hearing aids for over 30 years, and I have never been asked by an audiologist, “What’s your biggest hearing challenge? How’s it going at work? How’s it going at home? How are the holidays?” There’s never any discussion about that. That’s the lived experience that Shari is talking about, too.

There’s never any talk about how you can teach people in your world to communicate with you better and vice versa, things that we can do. That’s what we’d like to see is more of that type of support from the professional community. There’s some that are doing that, with aural rehabilitation and teaching people how they can live better with hearing loss by taking those steps, by having those conversations.

EBERTS: For speech-language pathologists, it’s not so much about the technology, it’s about these other nontechnical skills that you need to develop as a person with hearing loss that help the technology work better.

For example, if we have a hearing aid, but we don’t know to ask people to not cover their face while they’re speaking, or that we want to sit at a particular spot at the table so the person that’s hardest to hear is across from us. Or that we want to make sure there’s not so much background noise. Or that we must learn how to attend to lip-reading and speech-reading cues. Some of it comes naturally for most people with hearing loss because we must learn to use every clue we have, it’s like a survival thing kicks in, but there are also speech-reading skills that can be taught.

A lot of times when we go to the professional community, the focus is on the technology so that the appointment time runs out and we haven’t gotten to any of those softer skills. Sometimes those are equally important, if not more important, for successful communication with other people.

COHEN: Everything Shari is saying is absolutely true, and there’s rarely a discussion of assistive listening devices. The technology that we hear about is the hearing aid or the cochlear implant, but we don’t always hear about other technologies that can be helpful to us, including remote microphones like Oticon’s Connect Clip or Phonak’s Roger Pen or others like that. It’s basically a remote microphone that your communication partner can clip onto their shirt. You can hear better because what they say streams directly into your hearing aids.

There is also turning on the captions on the TV. So much of the issue with people and families is that the TV is so loud. People don’t know or they might think family members are going to be aggravated by having the captions turned on, but it can really make a difference to be able to follow the show.

EBERTS: That just made me think of speech-to-text apps, too. It doesn’t even have to be expensive technology; it can simply be an app that can really assist.

Also, knowing about public accommodations like hearing loops. You switch your hearing device to the t-coil setting and the sound comes directly into your hearing aid. It bridges that distance so that rather than listening to a speaker from the back row of the auditorium you can tap into the sound system and have the speaker’s voice come directly into your hearing aid. It’s life changing, but many people have not heard of that. Even people with hearing loss have not heard of it or they don’t know about the captions.

It’s a great opportunity for professionals to educate people especially when they’re new to hearing loss, or even when they’re not new to hearing loss, about some of these other tools, the softer communication tools, and other technologies outside of hearing aids.

COHEN: It reminds me of the first time I went to an HLAA New York City chapter meeting, and they said you can turn on your t-coil. I had recently moved here from Connecticut, and I did not know I had a t-coil in my hearing aid. Someone taught me to press the button on my hearing aid to switch to t-coil and then the sound of the meeting [comes in]. I think there are seven Broadway theaters now in New York that have the looping technology that Shari is talking about. It’s miraculous to be able to hear so much more clearly.

Also, we can now connect directly to our smartphones. The sound comes straight to our hearing aids via Bluetooth so there’s no echo. It’s also miraculous. I’m using the word miraculous a lot, but it’s life changing.

EBERTS: Not educating people about these tools is a missed opportunity for the professional community. It’s hard for the professionals because they have a limited amount of time that they can spend with people, and they have their own business considerations, but that’s why this dialogue is so important and why we’re really excited to have this opportunity to speak to that community and help them better understand the lived experience and how they can be helpful to us.

Tell us about your advocacy and work with hearing loss organizations.

EBERTS: I have my own organization called Living with Hearing Loss. I do some hearing loss consulting, writing, speaking, and I have a blog.

I have been very active in trying to reach out, both to the hearing loss community to help bring down stigma and share some of those tips and tricks that I’ve learned through the years about how to live well. Also reaching out to the professional community. I just spoke at an ASHA panel about over-the-counter hearing aids. It’s important to bring the patient, or consumer, point of view into these dialogues. I speak at different conferences of audiologists and speech-language pathologists to share that experience.

I’m also on the National Board of Hearing Loss Association of America, which is the largest consumer group advocating for people with hearing loss in the United States. That’s a great way to contribute to the community and help with advocacy. HLAA was very involved with the over-the-counter hearing aid act that passed a number of years ago, and really pushing for those standards to be enacted so that the products can enter the marketplace.

COHEN: My story’s a little bit different. Having hearing loss for a long time, it wasn’t until I moved to New York City that I became involved in the hearing loss community.

I’ve been career counseling for most of my career, so every time I had a client [with hearing loss] I would take out my hearing aid and say, “This will change your life.” Many people are not comfortable talking about hearing loss. For me, coming to New York City and being introduced to the Hearing Loss Association of America, I became the New York City chapter president. We bring different speakers to address issues related to living well with hearing loss.

That evolved into speaking at conferences about stigma because people are very uncomfortable talking about their own hearing loss. There’s the internal stigma, or the stories that we tell ourselves. There’s also the external stigma, the messages we get from other people that make it much more challenging. That evolved into moderating the virtual meetings for the hearing loss community during the pandemic and then co-producing the documentary.

It also provided the opportunity to become involved in theater in New York City. The Theatre Development Fund’s accessibility programs help make theater more accessible for people with disabilities, including people with hearing loss. Part of that is encouraging theaters to provide open-captioned performances, and to provide audio-described performances for people with low vision. There are also special performances for families with children with autism.

It’s also one person at a time. That’s why we appreciate this opportunity to talk to you to just raise the awareness of this experience.

Do you have any insights for CSHA and Convey, and the work we do to better serve the broader speech, language and hearing community?

EBERTS: Gratitude first for their focus on communication issues. Communication is the glue that binds us together as people, as a world, as a community. It sounds silly, but it really is. It takes a lot of work, especially for people who have communication difficulties. So, we are very grateful for all the work your community is doing on that front, both through your advocacy efforts and through their individual work with patients and clients.

Through “We Hear You,” we are trying to share the lived experience perspective. The more professionals can embrace and understand the day-to-day experience of the people they’re trying to help and the people that they’re working with, the better their care can be. They can be more tailored in their approach when they better understand the things that really help.

Taking the time to get to know each individual client, their needs, like Holly said, sometimes professionals don’t necessarily ask what is most important to us. Their role can be more effective if they view each client as an individual and spend the time to understand their needs, their hopes and their journeys so that they can provide the best tools for that person.

COHEN: There’s nothing more I can add because Shari did so well except to say, this is what person-centered care is. It’s about the person.

Jennifer Snelling is a freelancer who writes for a variety of publications and institutions, including the University of Oregon. She’s a frequent classroom volunteer and is active in schools in Eugene, Oregon.