"Fixing" Deafness

 Once upon a time, I took a Deaf Culture class to finish up a late-in-life degree in education.  One hot topic was all the ways hearing people try to "fix" Deaf people because they view deafness as a state of "broken" being.  Deaf people don't see it that way.  

When my parents went to schools for the deaf in the 1930-40s, the most preferred educational method was oralism.  My mother and my aunt went to a school that used the oral method and they were punished severely if they even gestured for something.  They endured hours of lipreading training which did little to help them "fit" into the hearing world.  In fact, both my mother and my aunt learned sign language on the sly.  My father was fortunate.  His school was one of the few that allowed the use of sign language.

The 1990s brought about new techniques to soothe hearing parents of deaf children, who wanted their kids to fit seamlessly into a hearing world.  The first was non-invasive and meant to enhance lipreading and speech.  The second was surgical and had the Deaf community up in arms.

The non-invasive method is called “cued speech.”  This definition comes from Audiology Online: “Cued Speech is a visual communication system which, in American English, uses the natural mouth movements of speech in combination with eight handshapes (which distinguish consonant phonemes) in four different locations near the mouth (to distinguish vowel phonemes). The cues added to the mouth movements make all the phonemes of spoken language look different. Consonants are 'cued' in vowel locations, allowing the cues to be synchronized with the spoken language, syllable by syllable.”  https://www.audiologyonline.com/articles/an-outline-of-cued-speech-1264  Originally, it was meant to teach deaf children to read. 

Hearing parents favored cued speech over American Sign Language (ASL) for their deaf children because it was closest to English.  When I was an interpreter for a high school, there were cued speech interpreters as well as ASL/Pidgin sign language interpreters like me.  Their deaf students didn’t use sign language except to communicate with Deaf peers in the lunch room.  The parents of cued speech students didn’t want their children signing and so once again their signing abilities were kept secret.

How well did cued speech work?  I interpreted a math class for an ASL student.  Sitting next to my student, Anne, was one who used cued speech, Bella, and had her own interpreter sitting next to me.  What a sight we must have been while the teacher was lecturing! 

Interesting enough, the cued speech students didn’t use the hand shapes when they were answering in class.  They voiced only.  One day the teacher called on Bella to answer a question.  Bella answered aloud.  Her speech was typically “deaf” – flat, no inflections, and mispronounced words.  The teacher and Bella’s interpreter stared at her blankly.  The interpreter then signaled to Bella to repeat her answer with cues.  Bella refused and spoke again. 

 

Normally interpreters don’t intervene with another unless there’s a situation in which the other interpreter is struggling.  Bella wasn’t my student but I was so used to Deaf speech I just voiced aloud what Bella was saying and everyone was relieved.  There was a brief signed exchange between Annie and Bella.  Annie signed, “You see?  You should learn to sign and then you can share my interpreter.”

After class, Bella stopped me.  She signed “You understood me?” and I answered “Yes, my parents are deaf  and your speech is like theirs.”  She nodded and smiled.  For the following year, Bella “rebelled” and asked for an ASL interpreter.  Two other cuing students also wanted their Individualized Education Program (IEP)s changed so they could have ASL interpreters.

My parents and their friends in the Deaf community felt sorry for the deaf cuing students, remembering their own childhood experiences with enforced lipreading.  They believed the children were unnecessarily and cruelly prevented from using their own natural language. 

A new surgical intervention was introduced so that deaf children could “become hearing”:  the cochlear implant.  “A cochlear implant is an electronic device that partially restores hearing. It can be an option for people who have severe hearing loss from inner-ear damage who are no longer helped by using hearing aids.

Unlike hearing aids, which amplify sound, a cochlear implant bypasses damaged portions of the ear to deliver sound signals to the hearing (auditory) nerve. …” https://www.Annieoclinic.org/tests-procedures/cochlear-implants/about/pac-20385021 Hearing parents leaped on implants, viewing it as a miracle cure for their children’s deafness.  Deaf adults were horrified by the device not only because of the possible side effects of implantation but because they viewed the devices as an assault on sign language and their culture.

When the device is implanted, any residual hearing in the auditory nerves are destroyed.  Parents of young implanted children have to be sure to remove the connections before the little ones can go swimming or jump on ball pools or trampolines.  There is a risk of infection, dizziness, and tinnitus.  Still, hearing parents swallowed the propaganda doctors gave them about how well their children would fit into the hearing world if they got implanted.

Deaf adults felt implanted students would never learn their own natural language, never experience the closeness of the Deaf community, never learn Deaf culture and would be forced to live like fish out of water in the hearing community.  Even with implantation, Deaf adults realized these children would never be able to hear perfectly and communication with hearing people would always be an issue.  As adults, those implanted wouldn’t have the relief of falling back into the Deaf community after coming home from work.

There were two students who’d been implanted while I was an educational interpreter  and neither had been consulted about whether they wanted the surgery.  One was a 7^th grader with a cued speech interpreter.  His interpreter told me one day that the child was very angry and resentful about the implants.  He felt they neither helped him hear nor made his speech more intelligible.  He had to keep his signing limited to the cafeteria and felt stigmatized.

The other student was a senior and was also angry his parents went against his wishes about the implant.  He was very content with being Deaf and freely signed with the other two deaf seniors.  He felt he should have been allowed to say no to the surgery.  He complained he couldn’t taste food since the implant.

Deaf parents of Deaf students have tried repeatedly to reach out to hearing parents.  They wanted to explain that Deafness wasn’t anything to fear.  Sign language has been recognized as a legitimate foreign language and some schools have added it to their programs along with Spanish, French and German.  Deaf culture is rich and embracing.  Their own Deaf children were thriving and far outpaced their cued and implanted counterparts.  The reason for that is the Deaf children begin to learn and use language as early at 6 months old.  Unfortunately, hearing parents had little to no interest in communicating with Deaf parents.

When my second child was 6 months old, we participated in a study at Gallaudet University.  Three groups were involved:  hearing parents with hearing children (my daughter and I), hearing parents with deaf children, and Deaf parents with Deaf children.  The study went for 2 years.  At the end, I asked about the results.  I couldn’t have access to all of the research but the bottom line was the hearing-hearing and Deaf-Deaf group excelled with development of language while the hearing-deaf group lagged far behind.

Interesting side note:  the reaction of parents to learning they have deaf children is striking.  Most hearing parents are alarmed, wondering how they will be able to communicate with their children.  They are afraid for the future of their children.  Most of the children don’t begin learning language until they are of preschool age and then are very delayed.  Parents leap on any way to “fix” their children.

Deaf parents celebrate having Deaf children.  They have instant communication with their babies right from birth.  Their children tend to be more self-confident and comfortable with their lack of hearing.  They are exposed to language much earlier than the deaf kids of hearing parents, making learning English as a second language so easier for them.

My parents were faced with a dilemma and that was how to parent hearing children.  Their issues were similar to hearing-deaf families in the area of communication.  Most Deaf parents sign with their hearing children.  ASL becomes their first language before they are able to speak.  I knew of a minister of the Deaf who didn’t speak until he started kindergarten.

I haven't been an interpreter for years because of repetitive motion injuries to my hands and my parents have since passed.  I haven't been a part of the Deaf community since so I'm not sure how prevalent cochlear implants are these days.  When I took that Deaf culture class, we watched a special that aired on Sixty Minutes.  At that point, Deaf adults had begun to allow their children to be implanted.  Several of the adults decided to get implanted as well.

I guess I am old school.  I am opposed to such surgery on babies and young children who have no voice in being implanted.  My view, wrong or not, is that they should be old enough to make an informed decision.  If one of my children had been born Deaf, I would have raised them with ASL and let them decide for themselves what to do.