Ears to hear

Renee d’Offay bustles around a community meeting room, taking the lids off a pan of sticky date pudding and a bowl of fruit. Her blond hair is pulled back in a ponytail, hiding the small device magnetically attached behind her left ear.

While she checks to make sure the coffeepot is perking, her daughter Harper runs to play in the adjoining room.

When d’Offay’s guests—kids and parents—arrive at the community ­center in Geelong, Australia, she greets them and introduces them to each other. She whispers to the children while making motions with her hands and then shows them the playroom.

Many of the parents and children who’ve gathered on this overcast autumn day are regulars at d’Offay’s meetings, coming each month for help and support as they navigate two very different worlds: that of the deaf and that of the hearing.

It’s a challenge d’Offay knows well. When she was 18 years old, d’Offay came down with a severe case of meningococcal meningitis. She went to sleep one Saturday deathly ill and woke up the next morning to complete silence. While she struggled to process her new reality, staff at the hospital introduced her to someone who had been through a similar situation.

“That was probably one of the best things that could have happened in the sense of feeling like I wasn’t alone, because everyone else’s life was just ­carrying on as normal, whereas mine had changed so much,” she said.

D’Offay’s new friend didn’t just provide encouragement, he offered hope for restoring what was lost: the ability to hear through a cochlear implant. A few months after recovering from her illness, d’Offay got her own implant. Since then, she has lived in what she calls a Venn diagram, between two worlds. She’s still fully deaf but able to “hear” verbal speech thanks to her “bionic ear.”

For those who aren’t deaf, the ­ability to restore hearing might seem almost miraculous. But not everyone with profound hearing loss wants a miracle. When Australian doctor Graeme Clark unveiled his device in 1978, members of the deaf community opposed it, arguing it would put their culture and language at risk. Some insisted deafness wasn’t a problem that needed to be fixed. And they criticized parents who opted for their young children to get the device, calling it cruel and a violation of their autonomy.

Despite that opposition, many deaf people do want to hear again. The number of people with a cochlear implant crossed the 1 million mark late last year. And the device’s development has led to significant technological advances that also help those who are blind, paralyzed, or suffer from epileptic seizures.

Still, the cochlear implant continues to divide the deaf community, a rift d’Offay strives to breach.

WHILE THE ADULTS chat over plates of fruit and pudding, the children play in the next room. Although about a third of them are deaf, the gathering is anything but quiet. The green light on red-headed Tyrone Nelson’s cochlear implant blinks rapidly, indicating the noise level. Tyrone is 20 months old and profoundly deaf in both ears. He can hear, but only as if he were 6 feet under water. Doctors say he may lose even that residual hearing by the time he turns 4.

Despite that diagnosis, Tyrone’s parents struggled with the decision to fit him with a cochlear implant. They didn’t want to impose treatment that negated how he was made, but they also knew he would spend his life primarily among people who can hear.

They considered waiting until he was 18, so he could make his own decision. But doctors at the Royal Victorian Eye and Ear Hospital told them getting the implant before turning 3 offers the best chance for success. During those early years, children’s brains are more plastic, or malleable. That’s also when children normally develop speech. Of course, there’s always the possibility that a cochlear implant won’t work, but waiting would relegate him with certainty to a lifetime of silence. Adults who get the device have a memory of speech. But Tyrone would never have that.

More than 90 percent of deaf children are born to hearing parents who must decide how they will communicate with their children, and how their children will communicate with the rest of the world. Of the 1.5 billion people worldwide who suffer from some form of hearing loss, the World Health Organization estimates 430 million need hearing assistance. That includes 14 percent of Australians and 13 percent of Americans with a long-term hearing disorder.

While the cochlear implant allows 95 percent of patients to communicate verbally, they still need to learn sign language and lip-reading, not only for when batteries run out and water sports prevent using electronics, but because the benefits of a cochlear implant are still limited.

Tyrone got his cochlear device in August 2022. Before that, he was silent, except to cry, and could only crawl due to balance issues. Now he walks and is making more sounds. He knows 28 signs, including “Mum,” and recognizes the advantages to wearing the device. And if his older sister is having a meltdown, he can always take off the external processor and enjoy the silence.

INVENTOR AND OTOLARYNGOLOGIST Graeme Clark wasn’t the first to implant electrodes into the cochlear nerves of deaf people. Americans William House and John Doyle did that in 1961, as an experiment. But Clark developed the first commercialized multichannel cochlear implant marketed to the general public. He wanted to understand the brain and verbal processing, but he also wanted to help people who couldn’t hear.

Before Clark could code speech using a verbal processor, he had to figure out how to get electrodes deep enough into the spiral-shaped cochlear nerve to reach the area responsible for the mid-to-high frequencies used for speech. While on vacation at Minnamurra Beach in New South Wales, he started playing with a cochlear-shaped nautilus shell to see how far he could insert a piece of grass into its ever-tightening curves. He quickly realized the electrodes for his invention needed to be like the grass, stiffer at the base and more flexible at the end so the electrodes could safely get deep enough into the cochlea. That discovery brought an abrupt end to the family’s vacation as he rushed back to the lab.

The cochlea has 3,000 receptors that each pick up a slightly different frequency of sound. David Grayden, the Clifford Chair in Neural Engineering at the University of Melbourne, explains that the current versions of implants have only 22 stimulators to match those receptors. The result is a lo-fi version of sound. “This is much like taking a picture with a low resolution camera,” he says. “You can see what the picture is, but you can’t see the fine details.” It also means music often sounds harsh and grating.

Because of the way the electrodes are inserted in the inner ear, they only reach to the first 1½ turns of the three-turn cochlea. That’s the high frequency region. Our brains upshift the sounds we hear to meet the frequencies available, Grayden says. New recipients might take up to a year to adjust, as if to a new sense, depending on how long they lived without hearing. But deaf infants are increasingly getting implants, in part because of technological advances that help doctors determine what sounds an infant can hear. That allows them to adjust the device accordingly.

Despite its limitations, Clark’s device represented a significant scientific breakthrough. But that didn’t mean he enjoyed support from fellow scientists. Colleagues criticized Clark’s work, saying it couldn’t be done. Hearing aid vendors said he’d take away their business if he succeeded, and doctors refused to refer their deaf patients to him.

But Clark persevered, determined to complete a mission he started when he was 5 years old, assisting his severely deaf father in the pharmacy. He declared then that he wanted to grow up to “fix ears,” and his faith sustained him in that quest.

At first he kept quiet in the lab about his trust in Jesus, but gradually he became more vocal. He anticipated heightened scrutiny—and opposition. Instead, his testimony led to prayer and Bible study in his office. That eventually drew in more than a dozen staff members who worked on and prayed about the cochlear implant, among other projects.

Clark witnessed the life-changing effect of his work in 1978 when the first patient received his implant. Rod Saunders had lost his hearing in a car accident two years earlier. Saunders was 46 at the time and understood musical scales from his years singing in the church choir. After switching on the device, Clark played the first few notes of “God Save the Queen.” As soon as Saunders heard Australia’s national anthem, he stood and saluted—and inadvertently unplugged all the connections to the computer monitoring his progress.

ALTHOUGH RENEE D’OFFAY got a cochlear implant just months after losing her hearing, neither life nor sound returned to normal. When her cochlear implant was switched on for the first time, she remembers her dad sounded like a mechanical Daffy Duck. She couldn’t distinguish between family members’ voices.

After the technicians mapped her device—a process that adjusts the bottom threshold and maximum comfort levels of different frequencies—sound improved, but she no longer enjoyed her dream job as a hairdresser. Chatting with the customers in a noisy setting took massive amounts of concentration. So she took a break and signed up for a short course in Australian Sign Language, more commonly referred to as Auslan.

“Something went off, and I loved it,” she recalled. She registered for an Auslan diploma course and learned its vocabulary, linguistics, and history. “I was immersed in this rich, beautiful language with efficient and wonderful people.”

Between taking classes and playing basketball for Australia at the Deaf Olympics, d’Offay increasingly interacted with the deaf community, where she now has one foot firmly planted. She uses her expertise in Auslan to help hearing parents and their families learn to communicate with their deaf family members. She also teaches sign language at a local high school to mostly hearing students.

Some in the deaf community want to make learning Auslan mandatory in schools. D’Offay disagrees, in part because she’s seen her own mother struggle to communicate that way. But she wishes everyone could learn it. “It’s such a beautiful language,” she says. In the last 20 years, d’Offay has seen a big shift in the hearing and deaf cultures. “I don’t know if it’s from education, the impact of the cochlear, or whatever, but now Auslan has become such a well-known language.”

Auslan bears some resemblance to British Sign Language. It uses two hands to form the letters of the alphabet, and vowels are represented by the individual fingers of one hand. American Sign Language, by contrast, uses only one hand to form letters.

Each country has its own sign language or languages, but the differences between them don’t divide deaf people the way spoken language can divide those who hear.

Colin Bevan, whose wife of 50 years is deaf, is often asked to teach about deaf culture at sign language classes, to help hearing people understand how integral sound is to their daily life and how completely absent it is from a deaf person’s. Deaf culture is visual, he says, and that common experience binds deaf people together in a way that transcends nationality or language.

Eva Bevan knows nine different forms of sign language, including those used in Malawi and Mozambique. She’s been deaf for all but six weeks of her 72 years because of the treatment she received for meningococcal meningitis in Hungary. She was diagnosed as being 100 percent deaf when her family arrived in Australia after fleeing the Hungarian Revolution in 1957. She recalls that her mother was heartbroken to hear the news, but Eva was not.

“I was happy,” she says in Auslan while her husband interprets. “The hearing people always worried, but it doesn’t affect me at all.”

Eva never wanted a cochlear implant. She says the sound would be confusing. “I walk at the beach and I see the waves, and I sing in my heart. At the beach there’s a lot of noise, but I don’t hear anything. I just think about heaven and how wonderful that will be.”

Eva uses her own gift of languages to talk about Jesus with people in what Mission Frontiers calls one of the world’s largest and most widely dispersed unreached people groups. Only 2 percent of those who are deaf are Christians, and the number of people with hearing loss continues to rise, according to the World Health Organization.

GRAEME CLARK is now 87 years old. He still maintains a presence at the various groups he started, even though his own hearing is waning. But David Grayden is picking up where Clark will eventually leave off. He works in real medical bionics, interfacing human-built systems with the nervous system using electronics and other methods. The bionic ear is just one example. He also teaches students to find unmet needs in hearing, vision, and motion and then develop biomedical solutions. Grayden’s office is toward the end of the upstairs hallway in the University of Melbourne’s biomedical engineering building, about an hour north of Geelong. His team includes grad students, many of them ensconced at computers in a lab downstairs. Experiments and testing take place in nearby sound booths.

Clark’s initial effort to help people with hearing loss has grown to include multiple biomedical projects, including a device that detects seizures and stimulates the brain to try to stop them. “There’s about a third of people with epilepsy who don’t benefit from drugs as much as they need to, and they still have seizures,” Grayden says. “But we’d like to take it up even further, to stop it from even starting in the first place.” Grayden’s team is also working to help the 5 percent of cochlear implant recipients for whom the device doesn’t work. And they’re developing a bionic eye that works on a principle similar to the bionic ear—implanting electrodes to bypass an ineffective optic nerve so a blind person can “see.”

Grayden’s motivation for these cutting-edge technologies comes in part because it’s exciting work. But it also stems from his sense of purpose. “I think we have a calling to help people,” he says. “One of the things that Jesus did when He was on earth was He cured blindness and deafness and helped the lame to walk. And so those are the sorts of things that I’m contributing to as well, to help people actually be able to interact with the environment.”

Grayden admits the devices are still a long way from restoring normal hearing or vision. “The more I learn about this body that is wonderfully made, the more astonished I am about how well it performs and how rudimentary our attempts to replicate it.”

BACK IN GEELONG, the children continue to play while their parents talk. They move in and out of the play room, sometimes wrestling with the bean bags in the main room or trying out all the sensory toys’ lights and sounds. Jimmy Garrett’s black shorts emphasize his long legs. His school uniform jacket declares “Be the Best.” He wears his cochlear processor clipped to his jacket collar, and his parents help him walk to the playroom, even though he’s 9 years old. When he was born, his mother Melissa knew he wouldn’t pass the infant screening test because of his bilateral cleft lip and ­palate, but the test results also showed profound hearing loss.

Jimmy’s challenges have family-­wide effects. When his health finally allowed them to work on his hearing, language, and balance, the whole ­family joined in to learn sign language with d’Offay. “It’s really cool because you know something that most people don’t know, and then you can communicate with more people,” says his older sister, Grace.

Another young boy, Henry, wears a red shirt that sets off his blond hair. Silver hearing aids peek over his ears. He sits on the floor in the main room and plays with a red double-decker bus and colorful wooden stacking toys while his dad Chris Walsh chats with d’Offay. Walsh says his son is almost 4 years old and just entering preschool. Only then does he talk about Henry’s degenerative hearing loss, a condition called auditory verbal agnosia. “Over time, he’ll have stepped drops of hearing, and maybe eventually he’ll have to change over to cochlear implants,” Walsh says. “It could be in six months’ time. It could be when he’s 20.”

Walsh and his wife are working to expand Henry’s verbal communication while he can still hear. They also take Auslan classes to prepare for the future. Their progress is slow, but being able to communicate with their son regardless of his hearing status gives them reason to persevere. Today’s meeting reinforces their growing understanding of the deaf community.

“I think people just think deaf is deaf, but it’s a really broad spectrum of experiences and communication differences,” Walsh says.

People sometimes tell Renee ­d’Offay that even if she did lose her hearing, she’s lucky to be alive. “But they still have their hearing,” she says, pointing out the insensitivity. Still, she admits losing her hearing fed her desire to make the most out of her situation.

One of her least favorite questions after speaking to a school group is, if she could, would she go back to being hearing? “I hate that question. But I think if I had to answer, I would say no because of the person it has turned me into. It’s where my journey has taken me. So many good things have come from such a huge experience and ­massive change.”