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Sunday, April 10, 2011

They're horrified: Deaf parents and appropriate cochlear implant surgery

Prof. Harlan Lane's take on disability, tolerance, and appropriate surgery for the deaf:

Question by Margot Sanger-Katz: Nine out of ten deaf people marry other deaf people. Why?

Answer by Prof. Harlan Lane: That's very significant. People who are blind as a rule do not want to marry other blind people. It's a positive value being deaf. When a culturally deaf woman is pregnant, she is hoping, "I'll love this child; it will be my child. But if it was deaf that would be really nice." That's one bit of evidence that deaf people don't view themselves as disabled.

Q: Does that mean they tend to oppose medical interventions for their deaf children, like cochlear implants?

A: Yes. There have been some surveys. And I've spoken with deaf adults, both those who have deaf children and those who don't. And they're horrified. To give an analogy, if we told pygmies we can make life a little easier for your kid if we administer this growth hormone to them, so they'll be taller, they would mostly be offended. Likewise with black Americans, if we told them we can make life a little easier for your kid because with a little plastic surgery and some skin lightening, which we can do now, they're going to "pass" more easily, I might get punched, and justifiably so.

If you're talking about the deaf as an "ethnic group," and what you're offering them is to try to change them to make them more like the majority, because life is easier for the majority, that's unethical.

It all turns on the definition of disability. The surgeons, especially, can only see disability. And, of course, if you can mitigate a disability, that's a good thing. But I, and deaf people, and others who know the deaf well, see that there's no disability here. There's a physical difference, which many minorities have.

We should allow the deaf to make their own decisions about surgery even if they decide differently than we would.

Read a story about href="http://www.PatientSafetyBlog.com/2010/05/when-you-buy-car-inappropriate-surgery.html">saying No to surgery. Thanks to Margot Sanger-Katz, whose interview appeared in today's Boston Globe.

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