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Hearing Loss Representation: Hits and Misses

Jong, Kelly

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doi: 10.1097/01.HJ.0000766216.10852.d0
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The emergence of greater representation of hearing loss, deafness, and technology in the media in recent years has expanded the general public's awareness of the lived experience of those with hearing loss, but whether that exposure has been beneficial is still up for debate. From the award-winning films Sound of Metal and A Star is Born to a contestant on The Bachelor and a character in Toy Story 4, representation of hearing loss and hearing technology have penetrated the mainstream media like never before. But to those who have hearing loss and those who treat it, that representation often misses the mark, influencing the public's perception in ways that could be damaging. With more focus on audiology than ever in the public eye, it has never been a more opportune time for the hearing community to continue its valuable effort to inform and improve awareness of hearing loss and technology.

Shutterstock/melitas. Hearing loss, hearing aids, representation.

HEARING LOSS IN FILMS & TV

“Any time you can include someone and it's a real representation of what it's like to be deaf or hard of hearing, that's a positive thing,” said Donna L. Sorkin, MA, the executive director at American Cochlear Implant Alliance. Recent media inclusion of those who have hearing loss has launched a conversation across the country that opens the doors for awareness and allows the public to catch a glimpse of the lives of those using hearing technology. “I'm happy to see that people with hearing loss are starting to be represented in the media, and I love that these portrayals give us a chance to have a national conversation,” noted Laura Pratesi, AuD, CCC-A, F-AAA, owner of Citrus Hearing Clinic LLC. “It gets people asking questions and gets people talking.”

Increased representation has meant that those with hearing loss finally have a voice in the public space, Pratesi added. “Hearing loss has been ignored for so long—it's the ‘invisible’ disability. People who are deaf or hard of hearing can ‘pass’ a lot of the time,” she said. But as representation grows, the opportunity to showcase the diversity of those with hearing loss expands. “I especially love that these films are showing people who are young,” Pratesi said. “There is still such a huge misconception that hearing loss only affects the elderly, when nothing could be further from the truth.”

Rikki Poynter, YouTube content creator, Twitch streamer, writer, public speaker, and accessibility/disability consultant, added that some media portrayals are helping to break the barrier of not only age representation, but ability. “Seeing more deaf actors in popular mainstream shows like The Walking Dead, Grey's Anatomy, Supernatural, and now the Marvel movies, is helping a lot,” she said. “It especially helps to see that we have deaf characters who are doctors and superheroes, with no mention of needing to ‘fix’ hearing loss.”

Outside of the realm of fictional characters, those with hearing loss are gaining representation on popular television with series such as The Bachelor, which featured a contestant, Abigail Heringer, with cochlear implants for the first time in its 25th season. “The Bachelor representation was rather positive, as the contestant was very open about the fact that she had hearing loss and used two cochlear implants to hear,” Sorkin said. In fact, the audience reception of Heringer was so positive that fans lobbied to name her the lead of the next season of The Bachelorette.

Similarly, the film Sound of Metal offered a mainstream depiction of the emotional journey of hearing loss that resonated with many within the community. “The part of the film that most of us thought was really well done was the representation of what the main character, Ruben, went through emotionally when he lost hearing suddenly,” Sorkin said. “That felt true and accurate to most of us. Riz Ahmed [the actor portraying Ruben's character] had clearly researched the experience and did an incredibly accurate job of representing what it would be like to lose one's hearing quickly and wondering where you would fit in and how you would live your life in the future.” Poynter agreed. “Ruben's reaction to being late deafened, in my opinion, is very accurate,” she said. “Not all late-deafened people would react as strongly as he did, but it's not uncommon and not surprising. The way he rebelled in the beginning is similar to what I did when I was younger, had hearing loss, and had no access to the deaf community and American Sign Language. Being alone and trying to navigate that was a strange time for me,” she shared.

Of course, not all representation of those with hearing loss has been positive—or even accurate. “Where things veer off is when we misrepresent the technology or in some manner show it in a negative light,” Sorkin said. Despite its positive reception by both critics and a wide audience, Sound of Metal made major missteps in its representation of both hearing loss and technology, she said. “That was why so many of us were upset about Sound of Metal,” Sorkin said. “A film that was beautifully done and acted was negatively slanted against cochlear implants in every possible way.” Those slants—such as the depiction that a cochlear implant would not be covered by health insurance and would cost between $40,000 and $80,000—could deter those with hearing loss from even considering the technology. In addition, Sorkin noted that the surgical scars from the cochlear implant surgery were outdated and obtuse. “S-shaped scars from that surgical approach have not been used in years,” she said. “That was designed to shock and give a negative perception of the procedure.”

Ultimately, choices like these only serve to create a divide between those with and without hearing loss, Pratesi said. “The media, like a lot of the general population, believe that [hearing] is a very black and white issue,” she explained. “You're hearing or you're deaf. You speak, or you use sign language. In reality, there is much more of a grey area.” This portrayal of hearing loss—either in totality or completely non-existent—is chief among the major misses the media often makes when including a character with hearing loss, Pratesi said. “The deaf and hard of hearing experience is so much more varied than it is usually portrayed. We have signers with implants, we have lip readers who don't sign, we have people who wear osseointegrated devices, we have syndromic hearing loss and non-syndromic hearing loss, we have generationally deaf families, and hearing families with a deaf child. We have many different factions within the hard of hearing and deaf community, yet media portrayals reduce us to a very small subset, and the stereotypes can be incredibly infantilizing. It's very frustrating to be lumped together in a box.”

INCLUSION & MISREPRESENTATION

Of course, the media's portrayal impacts not only those with hearing loss but the rest of the public as well. What is shown in public spaces shapes the lay public's perception and awareness of hearing loss and technology, which can have larger implications for things like public policy, inclusivity, and technology adoption. “The flavor of the day for mainstream inclusion of hearing loss is over-the-counter hearing aids, which some think will change the way people pursue and use hearing technology,” Sorkin said. “That remains to be seen. But what's really important is the coverage of a variety of devices, which could impact utilization rates. Right now, only five to 10% of people who could benefit from cochlear implants use them because the majority think they're not covered by health insurance, that the surgery doesn't work, or that they're OK just wearing hearing aids. Misinformed representation of hearing technology only exacerbates this.”

But as hearing technology and assistive devices go more mainstream, there is hope that understanding and adoption will increase. The introduction of an American Girl doll with hearing aids has made a positive impact and offers an opportunity for children to be more aware of and comfortable with hearing technology. Similarly, the abundance of and enthusiasm for technology such as earbud headphones and in-ear Bluetooth devices makes hearing devices seem more approachable to the larger public. “The popularity of these devices could contribute to people choosing solutions that look less like what we think of as traditional hearing technology because it makes it more invisible,” Sorkin said.

Pratesi noted that outdated images used in the public contribute to outdated ideas of hearing loss and hearing technology, but a shift in marketing could mean a shift in adoption. “I get very irritated at the use of stock images of outdated, older model amplifier devices,” she said. “Hearing aids today are sleek, technological marvels, and most people have no idea that I'm even wearing one. I chose to get lime green as my color, just to have it stand out a bit more, and it still isn't noticed by most patients until I point it out.” Companies like Deaf Metal that design jewelry for hearing devices and use young models to display their products are changing the public idea of hearing loss, Pratesi said. “Most of my patients under 50—and I have quite a few—are happy to be loud and proud about their devices. Deaf Metal makes hearing aids look unique and change up the look to mesh well with a patient's aesthetic or vibe.”

Recent policy changes could also influence the public's acceptance of those with hearing loss and the technology they use, Sorkin said. “Some of the laws that have been passed in the U.S. and other countries around the world require that government systems at the state and national level provide accommodations for people with disabilities,” she explained. “There's a stigma about hearing loss, and those who experience it are just disinclined to talk about the fact that they need help with hearing. But policy change has, at some level, made us more conscious of the fact that we should include people with disabilities in mainstream society and be given the opportunity to adjust the public's perception about hearing loss.”

ROLE OF HEARING PROFESSIONALS

Despite strides in the media and public, there's a long way to go for hearing loss representation—but plenty of ways to tackle the gap. From designing film and theater performances with accessibility in mind through closed captioning, interpreters, and staff training, to telling positive stories in local avenues like newspapers and television, opportunities for representation abound. On a smaller scale, audiologists can push to reach out to their audiences at every opportunity. “As audiologists, I believe our number one job is education,” Pratesi said. “We can set ourselves up as the experts to reach out to for disability awareness. We have more platforms to address misinformation than ever before. Instead of venting amongst ourselves and colleagues, we could write reviews and send them to local papers, reach out to local TV, or call in to local radio stations. We're more connected than ever before, and we have to meet the public where they are.”

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