For Marne Sullivan, having a conversation is kind of like playing a game of Scrabble. Every time she talks to someone, she’s paying extra attention — trying to fill in the gaps in sentences if she misses a word or doesn’t quite catch bits and pieces of the conversation.

By the end of the day, she’s overcome with hearing fatigue. As a deaf person who uses a cochlear implant, hearing and speaking requires a lot of concentration. And by the time the clock hits 8 p.m., her roommates already know she’s popped off her cochlear implant so she can decompress.

Without her implant, she’s in her own silent world.

Marne Sullivan, a USC graduate student and track athlete, got her cochlear implant when she was three years old. (Photo courtesy of Marne Sullivan)

“I'm very grateful that my cochlear implant has given me the gift of hearing,” said Sullivan, a graduate student at the University of Southern California who studies communication management. “But also, I'm able to take it off… I like having the benefits of being part of the hearing world but also being part of the silent world — best of both worlds.”

Sullivan was born with Auditory Neuropathy Spectrum Disorder, which caused her deafness. She got her cochlear implant at three years old. One part of the device is surgically implanted within the inner ear while a second part is worn on the outside of the head, connected by a magnet. A cochlear implant captures sound with a microphone and transmits those signals directly to the auditory nerve inside the ear, simulating sound.

Sullivan was one of the first kids with her condition to receive a cochlear implant 20 years ago. Now, at 23, she said it’s a “little ironic” that she’s studying communication since she wasn’t able to speak in complete sentences until she was 6 years old.

In her adulthood, she’s found a passion for education and advocacy within the Deaf community.

“Growing up, I didn’t really know any deaf sports people or deaf athletes,” said Sullivan, a student athlete who runs track at USC. “And so now, my goal is to inspire and educate people about hearing loss and the struggles and triumphs of people who have hearing loss.”

But that device that sits just behind her right ear is also the subject of widespread debate and controversy within the Deaf and hard-of-hearing community.

Cochlear implants are hailed by many medical professionals as a “miracle cure” for hearing loss. Many proponents of the device argue that they should be implanted in children as early as possible. Depending on the manufacturer, cochlear implants are approved by the FDA for children as young as nine months. At this young age, the idea is for children to be able to practice and build their hearing and speaking skills to keep up with their peers.

Critics of cochlear implants argue that children shouldn’t be getting that kind of irreversible device when they’re too young to understand the operation and any risks. Instead, many Deaf people argue that children should instead be immersed in American Sign Language (ASL) or that they should at least have ASL supplementing their English skills to ensure full language development.

Organizations like the National Association of the Deaf (NAD) recognize ASL as the “backbone” of American Deaf culture. The NAD supports a bilingual approach for deaf children, emphasizing “early and full” exposure to ASL as a primary language in addition to English.

At a time when medical advancements are increasing, including experimental gene trials meant to restore hearing in deaf children, major health organizations estimate that one in four people will have some level of hearing loss by 2050. In a diverse and growing community, this debate has left many people feeling left out or stuck between the hearing and deaf worlds.

But what is ‘Deaf culture’?

For Brittany Comegna, Deaf culture is a sense of belonging. It’s a shared understanding of what it feels like to be different from others but to also take pride in that difference.

“Deaf culture is a feeling,” Comegna wrote in an interview conducted over email. “I can fly to another country and meet Deaf people there and find common experiences in growing up and being Deaf. It is an instant connection. We trade stories about our experiences navigating a hearing world.”

Comegna is Deaf and uses ASL as her native language. She graduated from USC's Gould School of Law in 2023 and now works as an education coordinator at the Rochester Institute of Technology in New York for Deaf and hard-of-hearing students.

Deaf culture includes the shared values, beliefs, attitudes and traditions shared within the Deaf community. One of the biggest aspects of Deaf culture is sign language.

For Comegna, she said she would’ve been a completely different person if she wasn’t Deaf.

“Being Deaf and encountering hardships for who/what I am has greatly shaped my worldview,” Comegna wrote. “I have become empathetic and built my capacity to recognize systems of oppression at play impacting a variety of marginalized communities. I appreciate my unique opportunity to experience life as a disabled person.”

Karen Ruiz, a Deaf ASL instructor at USC and other colleges in Southern California, said there's similarities between Deaf culture and her experience being Mexican American.

"I was able to see firsthand the traditions my Mexican family passed down: folklore, legends, music and the Spanish language," Ruiz said through an ASL interpreter. "Other groups pass down these same cultural attributes from generation to generation — each in their own unique way. Similarly, Deaf people pass down sign language, customs and ASL folklore and legends. ASL stories have been documented, preserved and passed down from generation to generation for countless years.”

Restoring hearing or eradicating deafness?

Every two weeks, a language dies. Climate change, loss of proficiency and lack of practice are just a few reasons why an estimated 230 languages went extinct between 1950 and 2010.

But what about a silent language? What about Deaf culture?

Earlier this year, the Children’s Hospital of Philadelphia (CHOP) announced successful results from a gene therapy treatment of a patient with hereditary hearing loss in the U.S.

In this experimental treatment, ​​surgeons successfully used gene therapy on Aissam, an 11-year-old boy from Morocco. He was born deaf in both ears, and the surgery was able to improve his hearing to the level of moderate hearing loss in one ear.

“Gene therapy for hearing loss is something that we physicians and scientists … have been working toward for over 20 years, and it is finally here,” John A. Germiller, an attending surgeon in the Division of Otolaryngology at CHOP, said in a statement about the operation. “While the gene therapy we performed in our patient was to correct an abnormality in one very rare gene, these studies may open the door for future use for some of the over 150 other genes that cause childhood hearing loss.”

This experimental operation is the first of its kind in the U.S. but one of a handful of others across the world in recent years. While stories like this one in Philadelphia are being described as a “breakthrough” in treatment with a “cutting edge” approach, it has some Deaf advocates worried.

Sara Nović, a Deaf writer, translator and activist, was quick to point out concerns about such gene therapy operations, especially for 11-year-old Aissam.

“Is it appropriate to experiment on Aissam, or minors in general, who cannot consent to their participation, particularly in trials that don’t address life-threatening conditions, or even provide significant benefits?” Nović wrote in an opinion piece for the Philadelphia Inquirer. “While parents can give legal consent, the fact that these treatments are elective, experimental, and don’t address a life-threatening condition should raise alarm bells about protections of patient bodily autonomy.”

Nović has also taken to X (formerly Twitter) to argue that gene trials for deaf children are just further attempts to “extinguish deaf people.”

“Oh you liked CODA? Echo? That sign language class you took? Marlee Matlin? People performing songs in ASL?” she posted the day after CHOP announced results from the gene trial operation. “Cool, can you maybe take a beat before you eugenics us right out of existence?

Nović isn’t alone in her concern over treatments meant to “cure” deafness. For Ruiz, her role as an ASL instructor reflects the importance of sign language within Deaf culture. Part of the tension over cochlear implants is for a similar reason — Ruiz and Nović argue that technologies to restore hearing cannot replace the importance of sign language within Deaf culture.

During an interview with Ruiz, she held up a card that read: “I’ve yet to meet anyone who has regretted learning sign language, but I have met many who have regretted not learning sign language.”

Karen Ruiz, who has taught ASL to college students for over seven years, discusses the importance of teaching deaf children ASL.

“Regardless if the individual has cochlear implants, hearing aids or any type of amplifying devices, I firmly believe that sign language should be a priority,” Ruiz said. “It’s important to know that while these devices offer amplifying sounds, they do not constitute a ‘cure’ for deafness. Keep in mind that when these devices are off, we are still Deaf. Therefore, these assistive devices are simply tools.”

While Comegna also supports ASL, she doesn’t perceive these technological advancements as a threat to Deaf culture.

“The way I see it, we cannot avoid technological advances in the same way people argue against AI,” Comegna said. “It’s here, and we need to learn how to adapt to it. It will change our lives, for better or for worse… I believe we will evolve and, along with us, the culture will evolve. I believe there will always be a value for signed languages and elements of Deaf culture that will get integrated into the mainstream culture.”

The ‘in-betweener’

For many cochlear implant users, it’s difficult to toe the line between the deaf and hearing worlds. While she was growing up, Sullivan said she struggled to feel like she was good enough to be fully accepted by either side.

“I'm kind of an in-betweener,” Sullivan said. “I was going through life of people being like ‘You need to do this. You need to do that’ or ‘You're not deaf enough’ or ‘Why do you have a cochlear implant’ — all these different voices clouding my brain. But now I've kind of come to terms with it. I respect everyone's decision because hearing loss is not a one-size-fits-all solution.”

Marne Sullivan discusses the difficulties she often faces while following the flow of conversation with her teammates when relying on a cochlear implant.

It’s a similar feeling for Emily Wilson, a Texas-based deaf muralist who uses two cochlear implants. She didn’t grow up with many accommodations — she was in speech therapy until eighth grade and didn’t learn much ASL until adulthood.

The first time Wilson was ever in a room surrounded only by other deaf people wasn’t until the 2022 Deaflympics in Brazil, and she had to rely only on ASL for nearly three weeks.

“There was maybe one or two people with cochlear implants,” Wilson said. “I loved every minute of it. I definitely cried the first few days because I was so overwhelmed. But the perspective that I gained out of it and the respect that I got from it — because I was willing to try and willing to have those hard conversations — it's like we gained a mutual respect for each other.”

Wilson said she was intimidated by ASL at first because she didn’t want to feel judged for her skill level, but she said she learned that she wouldn’t be judged as long as she remained respectful and asked the right questions.

She said representing the U.S. running track at the Deaflympics was the best experience she’s ever been through in her life and it helped her learn more about herself.

“That was the first time that I ever felt like, ‘You know what? I'm not different. We're all different. And we all come from very different backgrounds,’” Wilson said. “You have some people that went to the school for the deaf. You have people that went to mainstream schools but had ASL interpreters. Then you also have people like me, who grew up mainstream with no accommodation. For once in my life, it was like I wasn't the one on the outside of everything.”

Emily Wilson discusses how to be aware of her surroundings as a deaf person, especially when painting a mural.

Wilson’s three siblings are also deaf, but she was the first person in her family to lose her hearing.

“When I first lost my hearing, my parents were clueless,” Wilson said. “At that point, they had very limited resources because 24 years ago, it's not the same resource that you have today. A lot of doctors pushed the cochlear implant agenda because there weren't a lot of deaf resources that could advocate for deaf children."

Even after her experience running track in the Deaflympics, she still feels like she’s always been on the fence between the Deaf and hearing communities, especially as a cochlear implant user.

“I have a lot of new Deaf friends that are completely deaf and don't wear a cochlear implant, and I have so much respect for them,” Wilson said. “I'm still learning a lot about where I stand in all of this. I think the frustrating thing is that I have so much love for people with cochlear implants and who are capital ‘D’ deaf, and it's really hard for me to watch them not respect each other.”

Yaya Shi, a hard-of-hearing senior at USC, said she feels like an in-betweener too. She uses two hearing aids and serves as the president of USC’s ASL club.

“I'm not really fully deaf or entirely native in ASL to be … a part of the community, and then I'm also not fully hearing to take myself away from the community,” Shi said. “I'm something that's kind of like a half-and-half situation. I know a few individuals in the Deaf community, but at the same time, the Deaf community could be a little bit intimidating.”

Yaya Shi discusses her sign name and where it came from. In Deaf culture, many people have a sign name — a special sign that represents their name rather than spelling it out every time when signing.

Finding support within family

Among the four siblings in Wilson’s family, there are two boys, two girls, one hearing aid and seven cochlear implants.

Emily Wilson (second from right) poses with her three siblings in 2004. (Photo courtesy of Emily Wilson)

Even though she was the first in her family to lose her hearing, she knew she could rely on her siblings in a special way whenever she felt embarrassed or different from other kids.

“My siblings were a part of that mindset of like, ‘Okay, just because you're feeling that way, we don't feel shame about it, so you can't feel shame about it,’” Wilson said. “We just hold each other accountable.”

Comegna also has a special relationship with her Deaf older brother, Nick. She said she wouldn’t be alive today if she didn’t have support from her family and exposure to ASL, which she attributed greatly to her brother’s presence.

“I recall a lot of experiences of being othered in public, instances of maltreatment in hearing schools and special education programs, and neglect from my non-signing family members,” Comegna said. “However, having a Deaf sibling was life changing because I was never alone- *alone* (emphasis intended) in these experiences.”

Comegna said she’s extremely grateful to her family for supporting her desire to make her own decisions regarding her hearing. Her parents supported her decision to ditch hearing aids and stop going to speech therapy growing up. They supported her again when she decided to get a cochlear implant at 25. Through it all, she said the support and love were abundant.

“While our family and spouses are extremely supportive and fairly fluent in ASL, it’s really special to sit across from someone who just gets you on a level no one else does in the family,” Comegna said. “I’m truly grateful for the privilege of having another Deaf family member and to have grown up in an ASL household.