A deaf Utah teacher shares videos about life with cochlear implants

Emilee Segura, an early intervention specialist at The Utah Schools for the Deaf and the Blind, has been working with 2-year-old Lucy Bentley since the girl was 3 months old.

Both teacher and student were born deaf, and both have cochlear implants — electronic devices that can convert sound waves into impulses sent to the auditory nerve.

On a visit to the Bentley house in September, with a reporter and photographer along for this article, something happened that surprised Segura and Lucy’s mother, Megan.

Megan Bentley had pulled out her phone to keep Lucy occupied during the interview, and picked a song: “Baby,” a 2010 hit by Justin Bieber. Lucy — who at the time was learning colors, how to tell the difference between big and small objects, and remembering two objects to give to someone else — started singing along.

“Baby oh,” Lucy echoes, adding in a freestyle line of “Baby no.”

When Lucy asks Segura to do the appropriate American Sign Language signs to accompany the lyrics, the toddler mimics the signs.

“A year ago? Nothing,” Segura said, beaming at Lucy’s progress. “It’s amazing to see her develop.”

It’s everyday moments like that, Segura said, that give her job its joy and magic.

“I just love going into the home and seeing improvement, and that families are doing what I’m telling them to do, that we’re actually making progress,” Segura said. “It’s exciting and it’s, like, ‘Wow!’ This deaf kid is learning and growing.’”

Teaching and TikTok

Her work, both at the Utah Schools and as a self-identified “deaf content creator” posting on TikTok and Instagram, are quite personal to her, she said — because she talks about being a deaf person with a cochlear implant.

In her videos, she covers such topics as: Finding a hairstyle that goes with an implant on the side of her head, how to go to a movie theater, and how to handle “listening fatigue” — like spending a day with her implants off after a busy day attending her brother’s wedding reception.

“I share a lot of just my everyday life of living as a deaf person with a cochlear implant,” Segura said.

Many of the videos come about organically, she said, from her experiences. Sometimes, parents of deaf children ask her to make a video to address a specific topic, she said.

In one TikTok, Segura, who’s 25, shared that she’s never felt judged by the Deaf community for having an implant, but her parents did feel judged for making that decision when she was 18 months old.

“They had a lot of Deaf people say ‘cochlear implants are bad’ or ‘you don’t love your daughter for who she is; you want to change her,’” Segura explained. “My parents were like, ‘No, we just want to give her every opportunity.’”

The implant controversy

Within the Deaf and Hard of Hearing communities, cochlear implants have a history of being controversial, said Dr. Kate Johnson, lead clinical audiologist at the University of Utah, because they often are misrepresented as a cure for deafness or as a means of erasure of Deaf culture.

Johnson, who works in the Department of Otolaryngology at the U.’s School of Medicine, specializes in cochlear implants. As part of her doctoral studies, she said, she looked at curriculum that examines Deaf culture.

The controversy, Johnson said, comes from the notion that cochlear implants have been seen as “trying to fix a problem. … Especially for somebody that is being raised in the Deaf community, that is saying that being deaf is a disability and a problem that needs to be fixed, and that is not true.”

“I’m not fixing anything,” said Johnson, who works with people with cochlear implants daily. “I’m just trying to give resources and accessibility as much as I can in a world where, being deaf, you’re in the minority.”

Kim Lucas, president of the Utah Association of the Deaf, said cochlear implants remain controversial because they “are not necessarily intended for deaf individuals.”

“The cochlear implant, it does not make you automatically a hearing person,” said Lucas, who was born and raised deaf, and said she grew up using hearing aids a lot. “They always identify as a deaf person.”

Implants, Lucas said, can be a useful tool that can help someone find success in life — but they should be paired with other communication techniques — particularly American Sign Language. Lucas said she strongly advocates that parents make sure their children learn ASL, in case they grow up and decide not to use the implants.

The decision to get an implant, Lucas said, should be made by deaf adults who are “already established” as a person and understand the potential health risks, such as the long-term impact on their brains.

Johnson said the question of whether to wait opens another ethical controversy.

“You can’t have a child that’s born deaf, uses sign language to communicate, and then they decide they want to get a cochlear implant at age 15. That cochlear implant is not going to work for spoken language, because of the way that the neural plasticity of the brain works,” Johnson said.

Lucas said she disagrees with Johnson on the plasticity issue, and with children getting implants. Ultimately, she said, it’s the decision of the parents.

“Parents need to always understand that a cochlear implant does not make [their children] become a normal hearing person,” Lucas said.

Lucas said she has heard from many people who got implants, and complained of headaches, pain in their back or head, or have other limitations. Adults can communicate those issues, she said, but young children can’t.

“They can’t do … physical activities that they really want to try,” she said. “I feel like, ‘Why can they not enjoy their life at this point? Why can’t they just be themselves and who they are as a deaf individual?’ Deafness is not a disability. It is just a difference.”

Parents who decide to get implants for their children, Lucas said, should pay close attention to what happens next. “If they need a break from that sound and that noise, turn to using sign language,” she said. “The parents themselves can’t force the children to change into who they’re not meant to be.”

Both Johnson and Segura said they believe the controversy around cochlear implants has died down in recent years.

“Some of the controversy [is] probably always going to exist,” Johnson said. But because the technology has been around for years, she said, the controversy has “shifted and changed a little bit, [because] they have become much more common.”

Segura, in her online videos, is adamant to share that cochlear implants are not a cure, but a tool that can help people. She said she’s also a “big advocate” for using ASL, which she started learning even before she got her first implant, and spoken language.

Part of the community

The National Association of the Deaf, a national civil-rights organization, reports that “about two to three out of every 1,000 children in the United States are born deaf or hard of hearing.” The group says early identification is crucial in giving those children the resources they need.

In one of her videos, Segura said her parents couldn’t afford genetic testing when she was little, but they had always assumed her deafness was caused by genetics because they had eliminated other factors. (For example, it wasn’t caused by a virus during her mom’s pregnancy, because Segura has a twin brother who isn’t deaf.) As an adult, Segura said, she got a test that confirmed that she has a gene, inherited from both parents, associated with deafness.

Segura said she had early intervention, but didn’t have a deaf mentor with cochlear implants who could have answered the specific questions they had.

Ultimately, Segura said, she’s grateful for her parents’ decision.

“I was able to get a cochlear implant, do speech therapy, learn how to hear and talk, but then I also had ASL, so I was involved in the Deaf community as well,” she said. “I feel like I grew up with both, and I am still very much a part of both.”

Segura said she doesn’t tell the parents she works with what choice they should make for their children. She does advise them on the different devices available, including hearing aids and cochlear implants, and shares her experiences.

“I want to share with families that while you can still have a cochlear implant, you can still be involved in the Deaf community. You can sign and there doesn’t need to be such a stark difference,” she said. “Both worlds can merge and be together.”

‘You can live in both worlds’

Segura first worked as a deaf mentor, meeting with families and teaching them ASL.

“I saw the impact I was having on families, just being able to share my story and help them see that their child was going to live a very normal and happy life,” Segura said. “But I only had 10 families at a time. So I was like, ‘I want to reach more families.’”

Social media has allowed her to do that. She has 25 families she works with across Utah — and has more than 48,000 followers on TikTok, and nearly 50,000 on Instagram.

At Utah Schools for the Deaf and Blind, she now works for the Parent Infant Program, where she serves families like the Bentleys, by answering questions, performing language assessments every six months, helping with hearing devices, and teaching parents strategies to incorporate spoken language or ASL into daily routines.

“That’s how kids learn best,” Segura said.

Even when it comes to learning through play, like with Lucy, Segura only uses toys that the family has, so the parents can practice with the children when she’s not there.

Megan Bentley said the decision she and her husband made to get Lucy two cochlear implants came from a place of wanting to give their daughter every opportunity possible. Lucy was born completely deaf after Megan got a virus. Learning she was deaf, she said, was a big shock.

The information they got from doctors didn’t help answer a lot of the questions, she noted, but after their pediatrician connected them to the Parent Infant Program, and specifically to Segura, things got easier.

Segura recalled meeting the Bentleys, and showing them a Powerpoint presentation about her life — going to college, going to dances and getting married. Segura said that Megan and her husband both sobbed.

“That was the first day I was like, ‘Everything’s going to be OK,’” Megan said. “Emilee was really key in that for us — of seeing you can live in both worlds.”

Megan said they went “full force” with Segura, learning sign language and more — a process that continues to this day.

“I wanted [Lucy] to have access to both languages. Megan said. “It opened so many doors.” If Lucy someday decides to take off the implants, her mother said, “I would support it, 100%.”

Because Segura was born deaf and has an implant, Megan said she’s able to ask specific questions — like what she does at night after taking off her implant, and how she wakes up the next morning if she can’t hear the alarm.

One time, Megan said, the house was silent, and Lucy was screaming about something. Megan called Segura, who asked if a fan or the furnace were on. When Megan confirmed that, Segura said those appliances can give off a tone that, to a 2-year-old wearing implants, can be quite loud. Megan said she never would have noticed it.

“Just the questions that you don’t really know where to look, and Emilee just has those answers because she’s lived it,” Megan said. “Truly it was game-changing when Emilee came in the picture.”

Segura said problem solving is her favorite part of the job.

“Every family’s worried about different things, and I love being able to figure out what the family needs and how I can best help them,” she said. “I have to adapt to what the family is capable of, is willing to do, what they want for their child. Everyone has a different goal.”

Lucy’s first sign was “dad,” but her first spoken word was “mama.” One of Lucy’s most common signs, the family said, is Emilee’s sign name — the special sign she uses to identify herself.

“I wish everyone had an Emilee when they found out their baby is deaf,” Megan said.

‘My full story’

On her videos, Segura sometimes points out aspects of everyday life that the hearing community may not be aware of — such as accessibility issues. In one video, taken at a Costco, she points out how difficult it is to hear someone’s number being called when picking up a pizza; she suggests a visual cue to help people with hearing loss.

In many ways, Segura said, the videos have been good for her. Sometimes, though, the commenters say unkind things — such as “‘the world does not need to accommodate to you.”

In another video — where her husband was interpreting for her with ASL at her brother’s wedding — some people were outraged that her brother didn’t provide an ASL interpreter. (In a follow-up video, Segura explained that she usually hears fine with her implants, but the sound system wasn’t working well, so her husband stepped up so she could understand clearly.) Other commenters posted such things as “work on your hearing” or “just don’t be deaf.”

“Everyone has an opinion about something,” she said. Negative comments can be frustrating, she added, but “I just have to just let it roll off my back and be like, ‘They don’t understand my full story.’”

It took time, Segura said, for her to understand her full story.

“I struggled for a really long time, because I’m not hearing but I’m not deaf — because I can talk and I can hear. But I don’t like ‘hard of hearing,’ because when I take off my cochlear implant, I can’t hear anything,” Segura said. “[I] finally identified as deaf with a cochlear implant.”

Through her job — and working with families — she said she has been able to grow more confident.

Being deaf, Segura said, “is something that’s a part of who I am. It’s my life. … Also trying to be a role model for those kids. I want to be someone that they look up to.”