Unlocking the World of Sound for Deaf Children
ADA Sign Depot
October 13, 2018
By Jane E. Brody Oct. 8, 2018
Jane R. Madell, a pediatric audiology consultant and speech-language pathologist in Brooklyn, N.Y., wants every parent with a child who is born hearing-impaired to know that it is now possible for nearly all children with severe hearing loss to learn to listen and speak as if their hearing were completely normal.
“Children identified with hearing loss at birth and fitted with technology in the first weeks of life blend in so well with everyone else that people don’t realize there are so many deaf children,” she told me.
With the appropriate hearing device and auditory training for children and their caregivers during the preschool years, even those born deaf “will have the ability to learn with their peers when they start school,” Dr. Madell said. “Eighty-five percent of such children are successfully mainstreamed. Parents need to know that listening and spoken language is a possibility for their children.”
Determined to get this message out to all who learn their children lack normal hearing, Dr. Madell and Irene Taylor Brodsky produced a documentary, “The Listening Project,” to demonstrate the enormous help available through modern hearing assists and auditory training.
Among the “stars” in the film, all of whom grew up deaf or severely hearing-impaired, are Dr. Elizabeth Bonagura, an obstetrician-gynecologist and surgeon; Jake Spinowitz, a musician; Joanna Lippert, a medical social worker, and Amy Pollick, a psychologist. All started out with hearing aids that helped them learn to speak and understand spoken language.
But now all have cochlear implants that, as Ms. Lippert put it, “really revolutionized my world” when, at age 11, she became the first preteen to get a cochlear implant at New York University Medical Center.
“Suddenly when I was playing soccer, I could hear what my teammates were saying,” Ms. Lippert, now 33, recalled. “My mother practically cried when I heard a cricket chirping in the house. I couldn’t talk on the phone before. Now in my job at the Veteran’s Affairs Hospital in Manhattan, I’m on the phone all day long. The implant has been a wonderful gift.”
She told me, “The earlier you get the implant, the more successful it is because the more auditory input the brain gets at an early age, the better the auditory skills you will develop.”
Dr. Bonagura, 34, who lives in Alameda, Calif., didn’t get a cochlear implant until she was 22. She said it made medical school a lot easier and enabled her to work in obstetrics, a field that involves emergencies, loud operating rooms and the use of face masks that make lip reading impossible.
“No other field of medicine compares to the joy of delivering babies,” she said.
Mr. Spinowitz, a 27-year-old guitarist living in San Francisco, was born with profound hearing loss and used hearing aids until age 15 when suddenly they no longer worked because there was nothing to amplify — he had lost all residual hearing.
Once he got his implant, he said, “I began listening to music — all kinds of music — trying to make up for lost time.” He played in bands throughout high school and college and now works at YouTube helping music labels get their work represented.
“The implant made it easier to communicate in all kinds of situations. It made college and my job possible,” Mr. Spinowitz said. His message to the parents of children with profound hearing loss: “Sound makes the world a better place, so if you can have it, go for it.”
A cochlear implant bypasses the nonfunctioning hair cells of the auditory system and transmits sound directly to the auditory nerve so that the brain can process it. Implants can be inserted in babies before they can walk. According to the National Institute on Deafness and Other Communication Disorders, children with profound hearing loss who receive implants before 18 months of age “develop language skills at a rate comparable to children with normal hearing.”
As Dr. Bonagura says in the documentary, “The ability now to put implants in babies is incredible. They grow up with sound; they grow up hearing everything. Sound is a gift — laughter, voices, nature. How can you take that away from anyone?”
Still, many deaf people resist the current technology and insist that children with profound hearing loss should learn only sign language. They reject the idea that deafness needs to be corrected.
But, as Dr. Madell points out, only 0.1 percent of the population knows sign language, and 95 percent of deaf children are born to hearing parents, who then have to spend a long time learning to sign, during a period when children are normally learning to speak.
“Deafness today is not what it was 20 years ago,” she said. “Technology is so much better that virtually every child with hearing loss will be able to hear with the right devices — hearing aids and cochlear implants.”
Every baby born in the United States is supposed to be screened at birth for hearing loss. One baby in 1,000 of those screened will turn out to have moderate, severe or profound hearing loss that, if not promptly and properly treated, can delay their ability to learn to speak and understand speech.
Today’s auditory technology makes it possible for these babies to be fitted with a device that enables them to hear and, with auditory training, develop language skills as good as those of their normal-hearing peers.
Without newborn screening, critical months for learning spoken language can be lost. Children with serious hearing loss who are not screened at birth or soon thereafter often do not get their hearing checked until many months later when parents realize that they don’t respond appropriately to sounds and speech, or even later when they don’t start to speak at the usual milestones.
The American Academy of Pediatrics has established what are known as 1-3-6 guidelines that state that every baby should be screened for hearing by 1 month of age, a diagnosis of hearing loss made by 3 months and entry into early intervention services by 6 months. Yet currently only 67 percent of babies with profound hearing loss receive appropriate intervention by 6 months of age.
Jane Brody is the Personal Health columnist, a position she has held since 1976. She has written more than a dozen books including the best sellers “Jane Brody’s Nutrition Book” and “Jane Brody’s Good Food Book.”
A Clearer Message on Cochlear Implants
Portrayals of this technology as a “miracle” for deaf people overlook its potential downsides and challenges.
By Sara Novic
Ms. Novic is a deaf writer and teacher who uses American Sign Language and English.
At the start of every semester, before we dive into the course’s syllabus, I stand before my university students and let them ask me anything. Some ask about my writing career, grill me on the meaning of my tattoos or request pictures of my dog. But at least a few students each year ask me why I don’t have a cochlear implant and whether I want to get one.
This answer is, for me, an easy one. “No,” I say. “I’m happy with how I am now.”
I explain that deafness offers me a unique perspective on the world, or joke that I like it quiet when I’m writing, but I always end with a fact: “It would be a big commitment — learning to use a cochlear implant takes a lot of work.”
In my teaching, depending on the class, I use a combination of American Sign Language with interpreters, my own voice and lip reading when appropriate. I also use hearing aids that give me basic sound information. My experience is far from exceptional. Most deaf people use multiple methods of communication and technological support to interact with the hearing world.
It’s no secret that a heated debate over cochlear implantation has evolved in recent years, one frequently reduced to an either-or battle between sign language and speech. The reality is much more nuanced, and the more we understand about it, the better.
It’s true that cochlear implants are often misrepresented as the miracle cure for deafness. (Some people in the deaf community raised this concern about an Oct. 8 article in The Times by Jane Brody.) But not all deaf people are eligible for an implant; the devices work by bypassing defective cochleae and do not correct conductive hearing loss, replace dysfunctional auditory nerves nor aid with central auditory processing disorders.
Those who are good candidates still have a long road to success after the operation. A cochlear implant sends sound as electrical pulses to the auditory nerve; it does not come preloaded with language information. The user must spend years in vigorous auditory-verbal training to learn to decode the signals to understand sound and speech.
Because the implants are often depicted as quick fixes without mention of this process, the surrounding controversy is often framed as culture versus technology: Those who advocate American Sign Language (A.S.L.) are defenders of a language rendered irrelevant by scientific progress. And while cultural preservation is certainly a factor for deaf people, it is not the whole story.
Many medical professionals still present the decision to parents of deaf children as a strict binary — either A.S.L. or implant, not both — using outdated information about how this type of bilingualism hurts a child’s speech development. In reality, most deaf people use a combination of sign language and speech in everyday life, and few A.S.L. users are against assistive technology. The most popular model of A.S.L.-based deaf education is bimodal bilingualism, a methodology that uses A.S.L. as the primary language and neurolinguistic framework through which to learn subsequent ones, the same way most hearing people learn multiple languages.
Bimodal bilingualism is not a knee-jerk attempt to save sign language. It’s grounded in recent neurolinguistics research about the “critical period” of language development in the brain, from birth to 5 years old. When a child doesn’t gain language fluency during this period, language deprivation results, and one’s capacity for intellectual development is diminished substantially and permanently.
Children with a cochlear implant and no access to visual language may be unwittingly engaged in a race against the clock as they learn to interpret the electrical signals provided by the implant. Some children are successful in this pursuit, while others aren’t.
Low technological failure rates for implant hardware are often confused with the more complicated measure of success or failure of the devices in real-world contexts. Implant technology might be consistent in a vacuum, but the human use and response to it isn’t.
As with the rest of the American health care and education system, the efficacy is influenced by race, class, disability, access to therapeutic services and specialists, family support system, and the unique physiology, learning style and personality of every user. The age at which hearing loss was detected and whether a user is pre- or post-lingually deaf also play a role.
“The literature on outcomes for deaf children with cochlear implants shows patterned differences,” Dr. Laura Maudlin, the author of the 2016 book “Made to Hear: Cochlear Implants and Raising Deaf Children,” explained to me in an email. “Children from lower socioeconomic backgrounds and children of color fare worse with the implants. While there are clinical factors associated with variability in outcomes, social factors are far less understood. These are important because ‘success’ depends on the years of follow-up care and training.” She added: “The C.I. is not an ‘instant fix;’ the technology is embedded into people’s lives.”
Advocates of oral-only education often dismiss arguments for bilingualism with the phrase “parental choice,” but when implants are publicized as cures, many parents make a choice with incomplete information and without ever having met a deaf person before. And those who choose to forgo the implant face pressure from medical professionals.
Dr. Kaitlin Stack Whitney, an assistant professor at the Rochester Institute of Technology and the mother of a deaf preschooler, says her family’s experience has made it clear that the goal of implantation for many isn’t language access but rather to make the child “normal.”
“We are constantly asked why my A.S.L.-using preschooler, whose language development is more than a year ahead for his age, doesn’t have a C.I.,” she wrote in an email. “The focus isn’t on whether he’s educated, happy, and thriving — it’s on passing. Meanwhile, we know children with C. I.s who have language delays because of factors like age of hearing loss identification and quality of support.”
Dr. Stack Whitney said that she and her husband are not against implants and that their son will weigh in on the decision when he is older.
Rachel Kolb, a doctoral candidate at Emory University who has been deaf since birth and got an implant at 20 years old, believes that the popular notion of cochlear-implant-assisted hearing as “automatic and normal” is detrimental to those who use the technology. “My friends and acquaintances genuinely did seem to think that my implant would make me almost hearing, or at least that it would make me not deaf,” she said. “But I still am deaf. Ironically, I’ve realized many more of the ways that I really am deaf since getting my cochlear implant.” (Ms. Kolb contributed a wonderful essay and video to this series on listening to music with her cochlear implant: “Sensations of Sound: On Deafness and Music.”)
Ms. Kolb says applying a one-size-fits-all understanding to the subjective natures of sound and hearing does a disservice to implant users. “Because of the existing misperception of what cochlear implant technology actually does, and the range of outcomes that actually exists for different deaf people,” she says, “I’ve had to do a lot of work to explain to others what I do hear, and also why I still need and benefit from accommodations. I think this is the dangerous underside of perpetuating an uncomplicated story of cochlear-implant-as-cure.”
A cochlear implant isn’t inherently bad, but it isn’t inherently good, either; it is a neutral piece of technology, a tool, like a hammer. Expecting an implant to cure deafness or magically generate speech is to await the moment the hammer will fly out of one’s hand and build a house on its own. The value of the tool lies only in the skill of its user, and for the cochlear implant user, that skill is learned with much effort. To suggest otherwise is to give a disingenuous prognosis to potential patients and their parents, and discounts the hard work successful C.I. users do to communicate in a way the hearing world deems acceptable.
Sara Novic is an assistant professor of creative writing at Stockton University and the author of the novel “Girl at War.”
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