Wednesday, November 21, 2018

Cochlear implants

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…

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still present the decision to parents of deaf children as a strict binary — either A.S.L. or implant, not both — using outdated information about how this type of bilingualism hurts a child’s speech development.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…

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.”

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…

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.”

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. 

“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.”

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.

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