Sound vs. Silence May Divide Those With Hearing Loss

No two adolescents with a significant hearing loss in the same class at the Maria H. Katzenbach School for the Deaf here face the very same challenges in coping with the hearing world. This has always been so, but the advent of the cochlear implant has changed the equation.

Kathryn Cleary, who teaches U.S. history and government to high school students, has a mix of students that includes those who are profoundly deaf as well as students who have varying stages of hearing loss. Some students use hearing aids and some students have cochlear implants, but all students are fluent in American Sign Language, or ASL. It is the lingua Franca of the deaf world.

Some students come from deaf families and others from hearing families. It can make a major difference in their approach to life in the hearing world. Some hearing families favor speaking, and they are enthusiastic about cochlear implants. Some deaf families favor ASL.

“Everybody lives in the hearing world, but how they chose to live that life is what varies,” says Cleary. Cleary, who has no hearing loss, is fluent in ASL, which has its own vocabulary and grammar. She also is fluent in signing American English, which uses signs that represent specific words and uses English grammar.

Children who attend schools like the state-supported Katzenbach school acquire the skills to both sign and speak, said Gail Whitelaw, Ph.D., director of clinical instruction and research at Ohio State University’s department of speech and hearing science and president of the American Academy of Audiology.

From Whitelaw’s perspective as a pediatric audiologist there is not a clear cut dividing line between those who sign and speak and those who use one or the other exclusively. “In fact, these probably overlap and many children start out by using total communication that combines both speech and sign.”

The crucial issue, according to Whitelaw, is that “critical language learning is not delayed.” As an audiologist, “it is true that we value hearing, but I am really trying to offer solutions. We must always be careful, not to push a particular philosophy.”

But in the age of cochlear implants, it is difficult to resist that push, said Cleary. She noted that when hearing parents have a deaf child, cochlear implants may be especially tempting. “I have a girl in one of my classes who has a failed implant,” said Cleary. “I’ve been told that it really just needs to be ‘tweaked’ to make it work, but that means more surgery. This girl is 16 and she is refusing surgery.” She said the girl told her parents, “you had your chance, and it didn’t work.”

On the basis of her own work with deaf students, Cleary said that some students are resistant to implants or even hearing aids because “they wonder why people think they need to be fixed.”

Psychological evaluation is part of preimplant evaluation for patients who are candidates for cochlear implants, but in 1995 a National Institutes of Health consensus statement on cochlear implants, drawn up by independent advisers, said “that assessment of the psychological impact in children with implants lags behind that for the adult population.”

The statement by NIH advisers noted that since “language acquisition is closely associated with identity, social development, and social integration, the impact of implantation on a child’s development in these areas deserves more study to produce useful indicators that can bear upon the parental decision-making processes.”

Pediatric implantation, according to the NIH advisers, requires “a multidisciplinary team composed of physicians, audiologists, speech-language pathologists, rehabilitation specialists and educators familiar with deafness and cochlear implants.” Moreover, the consensus statement said that “educational programs for children with cochlear implants must include auditory and speech instruction using the auditory information offered by the implant.”

Cleary said this is already happening in the elementary school classrooms at Katzenbach school, where cochlear implants are commonplace. “They are organizing classrooms so that more auditory cues are used in teaching,” she said. “For example, if I’m showing a movie, I typically turn off the sound, but teachers are now turning on the sound for students with implants.”

But Cleary said there is still a need for teachers to educate deaf children using the child’s first language: ASL. Moreover, “for children from deaf families, this is their language,” she said.

“We have friends, a deaf family, in which both the mother and father come from generations of the deaf,” she said. The mother teaches with Cleary and the couple has two children attending the Katzenbach school. “These two kids are bright, gifted students,” she said, “as gifted as any hearing kids could be. They read, write, do math and science well beyond grade level.”

Cleary said one of the children is the same age as Cleary’s niece and she had the opportunity to watch language acquisition in both children. “When my niece was struggling to say dog, my friend’s daughter was just starting to make the sign for dog. As my niece’s language improved, so did my friend’s daughter. I thought, wow, these two are learning to communicate at exactly the same speed.”

And even as the growth of cochlear implants is changing the world of the deaf, the number of deaf families is increasing-probably a testament to success of sign language, which was introduced in the early 1800s as a way to help deaf people communicate. This led to an interest in deaf education and the eventual establishment of a network of schools for the deaf throughout the U.S, and coincides with a doubling of the proportion of people born with profound deafness.

About 50% of inherited deafness is caused by mutations in the connexin gene. If both parents have mutations in this gene, it is highly likely that their children will be deaf. Researchers at Virginia Commonwealth University reported in the American Journal of Human Genetics in June 2004 that 85% of individuals with profound deafness marry another deaf person-often a person that they met at school for the deaf-and there is an “amplification of the commonest form of recessive deafness in the overall population.” They reported that the proportion of people born with profound deafness has doubled since the 1800s.

But that social milieu may be changing. Cleary noted that many schools for the deaf are closing as school districts opt to “mainstream” deaf students rather than send students to schools like Katzenbach, where children can stay in dorms during the school week. The move to mainstream students, she said, is troubling because there are no guarantees that programs will offer the type of high quality education offered at her school.

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