The politics of deafness

August 16th, 2009

The Globe reports on the increased use of cochlear implants in children under three. Medical stories don’t tend to grab me, but identity, communication, and politics do, and there are serious ramifications to “fixing” deaf children at such an early age:

Before implants, deaf children learned American Sign Language or lip reading. Most fared well, although many could not speak. Like the De Laras, however, many families whose children receive implants today are dissuaded from learning sign language, a trend that will bear repercussions for the entire deaf community and that some specialists fear is a mistake.

Tyler’s generation, hearing specialists say, will redefine what it means to be deaf.

“I describe it as a revolution,’’ Schorr says. “It’s close to a miracle, what this technology has made possible.’’

I’m not so sure the Deaf community would define it as a “miracle,” although “revolution” they would certainly agree with. “Deaf” with a capital D is used not to define a physical condition, but a culture, a culture based to great extent around American Sign Language and the constraints and opportunities it affords. The “Deaf culture” view of deafness is contrasted with the “pathological” view of deafness, i.e., the view that being deaf is a disability and nothing more. (One can find both hearing and deaf individuals in both camps. For a good overview of Deaf culture, including some basic etiquette tips for hearing folks, go here. For a thoughtful argument for the pathological view, go here.) If cochlear implants are used at such an early age, the hearing parents of deaf children may, understandably, have little motivation to learn ASL or have it taught to their children. Without the next generation of signers, what will happen to Deaf culture?

I haven’t read the book yet, but I’ve met the writer, and if you are interested in cochlear implants–or science fiction!–check out Michael Chorost’s Rebuilt: How Becoming Part Computer Made Me More Human. Michael was hard of hearing from early childhood, received cochlear implants in his 30s when he went completely deaf, and is enough of a scientific and literary geek (in the best sense!) to have truly made the most of becoming a cyborg. (He is also an attractive man who bears some resemblance to Brent Spiner, the actor who played Data on “Star Trek: The Next Generation,” and we both agreed that it was a shame that Mr. Spiner would be too old to play him, should a film ever be made of Michael’s life. Who better to play a cyborg than the actor best known for playing an android?) His speech at Gallaudet University is a must-read.

2 Responses to “The politics of deafness”

  1. veronica on August 16, 2009 8:22 pm

    my 17 yr old cousin has a cochlear…that may stop working one day soon. he wasn’t 100% deaf but hearing impaired. he doesn’t read lips nor can he sign for a not so brilliant reason that has something to do with a pathological view of deafness among hearing parents…

    i fear the day when the implants stop working and he’s left without a way to communicate with people.

  2. magicbean on August 17, 2009 7:38 am

    ooh, thanks for the tip on Chorost. Another side of the picture (I’m guessing, without yet having read Chorost) is Jacques Lusseyran, who is a hero of mine – a blind man who led the largest French student resistance to the Nazis and provided hope to the dying while he himself was close to death in Buchenwald. He credits his success to being blinded at 7 (no, really). His scientist parents never treated him as disabled or useless or in need of coddling, and allowed him to experience the world in the way that allowed for the truth of his own senses. His lack of typical sight created a way of perceiving the world that was unexpectedly brilliant…his ability to perceive differently became an advantage that saved his life and many, many others.

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