Why some people turned down a 'medical miracle' and decided to stay deaf
The INSIDER Summary:
Many deaf people are encouraged to get a cochlear implant.
It's a high-tech medical device that helps the deaf perceive sound.
But these devices aren't as simple as they seem - and they're not a "cure" for deafness.
INSIDER spoke with deaf people who have stopped using cochlear implants to learn why they're not always a medical miracle.
Five years ago, a deaf woman named Sloan Churman decided to film herself at the moment she activated her new cochlear implant - the surgically implanted device that helps deaf people perceive sounds. "29 years old and hearing myself for the 1st time!" she wrote as a caption, when she uploaded the clip to Youtube.
That video has now been viewed more than 26 million times.
The viral reach of Churman's story is no surprise, considering its emotional punch: Watch her face as she hears herself speak. Watch her, overcome by a new sensation, suspended somewhere between smiling and sobbing. You'll probably feel your own eyes well up, too.
Churman's video isn't the only one of its kind. Type "cochlear implant" into the search bar on YouTube and you'll find thousands of videos - even fan-made video compilations - documenting reactions of deaf or hard of hearing people getting their implants switched on.
Babies' faces scrunch up then light up when they finally hear the voice of a parent. Adults transform from straight-faced to full-on crying. And in every video, we see what appears to be boundless, uncomplicated joy.
But cochlear implants are not as simple as these viral videos make them seem.
For some deaf people, the implant really is a positive, life-changing intervention. For others, however, cochlear implants are more nuisance than medical miracle.
Doctors push implants as a cure - but they're not that simple.
"This is primarily due to the philosophy of medical doctors that being deaf is a physical abnormality that should be cured," he wrote to INSIDER in an email. "Many doctors who perform cochlear implant surgeries have been aggressively promoting cochlear implants as a cure. Many parents who are struggling with the concept that their child is deaf often choose to proceed with cochlear implants on the basis of doctors' promotion of this technology as a cure."
Since at least 90% of deaf children are born to hearing parents, the implant is an alluring option - it offers the promise of easier communication. When children are implanted at a young age, chances are good that they'll grow up and understand speech, with little to no need for visual aids.
But presenting the technology as a simple "cure" is misleading. Deaf people don't understand speech perfectly as soon as the device is activated. They must spend months or even years working with speech therapists, learning how to process this unfamiliar sensory input. They're trained to lipread, to pick up on vocal cues, and to speak.
"Many people don't realize that the surgery is only a small piece of the puzzle," a deaf father of two implanted deaf children told INSIDER. (He asked to remain anonymous to protect his privacy.) "Cochlear implant is a shock to the brain because it's never had to interpret these kind of signals before. I'd imagine it's like trying to read the jumbled scrolling code in the Matrix for the first time. The process is very physically and mentally taxing - there is real fatigue due to working so hard to understand the sounds."
In short: It takes practice. But even practice may not be enough to make a cochlear implant truly work for its user.
Brandon Elquist has been deaf since age 2 and got a cochlear implant at age 3.
Today, at age 24, Elquist doesn't remember much about that day.
"I recall not knowing why I was at the hospital," he told INSIDER. "I can only remember playing in the waiting area with my father then the doctor came by with a Fisher Price Cozy Car. The doctor wheeled me toward the operating room and onto the operating table then I was given anesthesia. Next thing I knew, my head painfully throbbed after the surgery."
His parents brought him to speech therapy, but Elquist found living with his implant unbearable. It created an artificial ringing noise that distracted him from focusing on other sounds. He started to learn how to associate sounds with specific words but grew frustrated by the enormity of the task - plus, he recalled, a lot of the sounds he was supposed to be able to differentiate seemed the same.
"I would attempt to 'accidentally' break my cochlears by dropping into the toilet, [or] wrapping the wire around a swing and claiming it got caught on the chain," he said. "Despite my fruitless efforts, my parents always took me back to the audiologist for a new cochlear."
In middle school, he wore the implant but frequently switched it off, despite his parents' wishes. He was punished or grounded for refusing to cooperate with them. It wasn't until high school that Elquist's parents finally conceded: The years of speech therapy hadn't worked. Their son was happier living without the implant, using sign language to communicate.
"I was repeatedly warned by my parents that the cochlear was 'essential' for me to assimilate into the society and that I would have a very successful future with it, which wasn't true. I have met a bunch of people who had cochlear implant surgery and no longer wear them," he said. "Getting cochlear is not the only way for deaf people to be successful in life."
Cochlear implants perpetuate the idea that deaf people need to be "fixed" - and a lot of deaf people take issue with that.
INSIDER also spoke with a young man who got a cochlear implant just before turning 7 years old. (He asked to remain anonymous to protect his privacy.) He was born to hearing parents and had a hearing sibling, so it seemed like the best possible choice.
But everything changed when he went off to study at Gallaudet University in Washington, DC - the only university in the world that's designed to be "barrier-free" for deaf people.
"One thing that impacted me the most was the fact that all teachers sign in ASL," he told INSIDER via email. (That's shorthand for American Sign Language.) "I didn't need an interpreter like I used to when I was growing up. Communicating and cooperating with a teacher who signs is just an eye-opening experience. I could be myself and be comfortable around teachers at Gallaudet."
It was at Gallaudet that he first encountered Deaf - with a capital D - culture. Just like any other culture, deaf people have their own history, heroes, traditions, values, art forms, and most importantly, a rich and expressive language. And it wasn't until he was steeped in this culture that he realized he didn't need an implant after all.
"While I was picking up the aspects of Deaf culture and the language of ASL, I finally realized that I've found my own identity," he said. "I am Deaf and I am darn proud of it. From there, I didn't see the purpose to continue wearing my implant."
His rejection of his implant drives at a larger point that hearing people don't always understand: Many in the deaf community don't want to be "fixed" to become more like hearing people. In fact, because implanted children usually don't learn ASL, some feel that implants represent a loss for Deaf culture.
"What is there to fix?," Elquist asked. "We're happy with the way we are. We don't view it as problem."
"There are countless Deaf people who are brilliant and successful," the Gallaudet graduate added. "Bottom line is, we as Deaf people are the same as others, except we cannot hear. Deaf people can do anything, period."
Cochlear implants are still a divisive choice.
Share a cochlear implant activation video online and you're likely to see an all-out brawl unfold in the comments section. Deaf people assert that deaf kids don't need implants. Hearing people fire back, arguing that denying those kids cochlear implants is akin to child abuse.
Even within the deaf community, there's fierce debate.
Some see cochlear implants as a form of oppression from the hearing world and actively protest the technology. Some deaf people who get implants have even been shunned by the deaf community.
Others in the community are more open to the technology. The deaf father who spoke to INSIDER believes that the trend is toward tolerance for all deaf people - no matter whether they're implanted. That happens to be the position of the National Association for the Deaf, too.
"The NAD welcomes all individuals regardless of [...] mode of communication, preferred language use, hearing status, educational background, and use of technologies," reads the organization's current position statement on cochlear implants. "Diversity requires mutual respect for individual differences and choices."
The truth is that there's no answer that works for every deaf person. Plenty of people are happy and successful with cochlear implants, just as all those viral videos and their millions of views imply. The deaf father's son, for instance, can now have phone conversations thanks to his implant. But for others, life's just fine without them.
"Cochlear implants aren't the easy button people think they are," the father told INSIDER. "It's not the only way a deaf person can ever be happy with themselves."