The changing face of deafness
By Donna L. Sorkin and Colin Driscoll
Fewer than one percent of babies in the United States are born with some level of hearing loss. That may not seem like much. But it means that up to 12,000 American children enter the world each year struggling to hear or completely deaf.
Fortunately, the medical community is identifying kids with impaired hearing earlier than ever. Last year, 98 percent of newborns were screened for hearing loss, a vast improvement over the 10 percent screened in 1993.
Thanks to new technology, we can act early on the results of those screenings, effectively restore hearing, and allow children to develop spoken language skills. These new technologies allow families to choose how to experience deafness with their children.
A quarter of a century ago, most kids with hearing loss weren’t diagnosed until they were two and a half when their parents noticed they weren’t talking. Given their late start, children born deaf typically never learned to read past a fourth-grade level.
That began to change in 1999 when the federal government enacted legislation encouraging states to screen hearing in newborns. Early identification opened the door for the early intervention essential for language development.
Cochlear implant technology also began to take off in the 1990s. These surgically implanted electronic devices help provide a sense of sound to people who are deaf or have severe hearing loss.
Children who receive cochlear implants develop language skills at rates similar to children without hearing loss. And studies show that seven in eight of them test at a level commensurate with or above that of their hearing peers in reading comprehension.
Anecdotally, some children with cochlear implants fare even better. The Listening Project, a new documentary film premiering in March in Washington, profiles 15 of them including doctors, neuroscientists, business analysts, and musicians.
Yet only half of all American children who could benefit from a cochlear implant actually receive one. Compare that to Europe where nine in 10 receive implants.
Many American parents don’t know that cochlear implants are an option. That’s partially because much of the information provided to parents of newborns who are deaf comes from the deaf cultural community. There’s also no clear system or referral pathway to connect eligible candidates with cochlear implant specialists.
Some people who are deaf and choose not to hear argue that cochlear implants and other advanced hearing technologies deprive children who are deaf of immersion in the natural language of the deaf, American Sign Language.
But more than nine in 10 parents of children who are deaf have normal hearing. They don’t know sign language. They’re more comfortable with technology that can empower them to teach their child how to speak, read, and write.
There is no right way to be deaf. For some families, a cochlear implant and immersion in the world of listening and talking may be best. For others, sign language and a specialized education in the deaf community may be optimal. For still others, a combination of the two may be appropriate.
Parents have choices about how to approach deafness with their children that will have profound and long-lasting consequences. We in the medical and hearing-loss communities ought to do all we can to furnish parents with the best scientific research so that they can make informed and timely decisions for their children.
Donna L. Sorkin is executive director of the American Cochlear Implant Alliance and the recipient of a cochlear implant. Dr. Colin Driscoll is chair of the board of directors of the American Cochlear Implant Alliance and professor and chair of otolaryngology and head and neck surgery at the Mayo Clinic.
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