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Wednesday, June 12, 2013

When self-identity can change: Q&A with Charles Limb

Culture TED Talks

Andrew Solomon: Love, no matter whatAndrew Solomon: Love, no matter what This morning’s TED Talk from Andrew Solomon asks a deep question about parents and children. Inspired by his own upbringing, Solomon wondered how parents form bonds with extraordinary children — or, in his words, when the “vertical culture” passed from parent to child is different from the “horizontal culture” of the child’s own self-identity.

As an example, Solomon suggests the case of a deaf child born to a hearing parent. The hearing parents may want the child to be more like them, while the child may find a rewarding identity in being part of Deaf culture. Watch his talk to find out more …

This example led the TED Blog to a phone call with a TED Talks speaker who works at the complicated intersection of hearing and identity: Dr. Charles Limb. In his surgical practice, he performs cochlear implants, an elective surgery that can offer hearing-impaired people an increased ability to hear sound. Charles Limb: Building the musical muscleCharles Limb: Building the musical muscleAnd unlike some of the other examples in Solomon’s talk, a hearing impairment is a situation which, sometimes, a technology can change — which raises the question of self-identity in a whole new way. An edited version of our conversation follows.

What do you make of the suggestion that deaf people might not, in fact, be interested in changing the essence of their selves?

I have this conversation, or a related version of this conversation, with many, many patients who have wondered about implants. They want to make sure that they are not by proxy making a decision that is an ethical one as opposed to a medical one.

And I think this is a reframing of an ethical question that emerged as soon as the idea of a cochlear implant became a reality, which is: “Now we can do this, should we? And if we should, who makes the decision? Who gets the implant?” I wouldn’t say these issues have been resolved with time, but we’ve gotten more comfortable with them as they’ve become less theoretical and more real.

This is a perfect example of where theory and reality influence each other but aren’t exactly the same. What is a very, very controversial idea on paper oftentimes turns out not to be so controversial in real life.

What do you mean by that?

There will always be extreme opinions, where some people feel very passionately about an issue. But really there’s this more average group of patients that feel kind of in the middle about it, which is that a cochlear implant could offer them something but not everything; it could help them, but it’s not necessarily going to define them.

In his talk, Andrew Solomon describes the contrast between vertical and horizontal culture, suggesting that, to some extent, parents should be happy with the way their child is born, not strive to affect it. What do you make of that?

This vertical/horizontal culture thing certainly exists. But here’s one analogy that should be corrected: He says that when somebody is born a certain ethnicity, we don’t think about how to change their skin color, or their hair color — but you have to make a distinction between a trait that is aesthetic, cosmetic or nonfunctional, and one that is about function. With cochlear implants, we’re not talking about how an ear looks, we’re talking about how an ear functions. I think at the very bottom, the sort of tension between how you define illness as an identity, or a deficit or disability, is one that you don’t necessarily want to be too cute about. You can certainly say that anyone who has any kind of impairment can find a community that shares it and that can help that person live a good life. Illness doesn’t mean you have to be miserable or live a horrible life in any way. On the other hand, if you look at it from a brain perspective, humans are born with brain functions to process sensory information. And it’s not like the brain is better off without that information.

From a medical perspective, I think cochlear implants have managed to skirt this balance in a really respectful way. I think a lot of these communities have come together to say, Look, this technology is real. Nobody has to have it, but nobody who wants it should be denied it. We’re not talking about making a decision which erases or dismisses a cultural identity. But if you want it, this is what we can try to do.

By performing a cochlear implant, do you worry that you are changing the identity of a deaf person who undergoes the procedure?

What cochlear implants have done is created a gray zone. And the gray zone is this: People who have cochlear implants don’t have normal hearing, and they’re not also functionally deaf in the same way that the Deaf community has traditionally been. There’s now a few hundred thousand people in the world who have cochlear implants. It’s creating a hybrid, a subset of individuals with a lot of solidarity. Some of them function in the non-hearing-impaired community, and some people function very comfortably in the Deaf community. You have both.

The Deaf community is a very kind and loving community. And I think what’s happening is that the Deaf community is not seeing their community, their culture, be wiped out. This kind of theoretical threat hasn’t panned out. What’s happening with people is, the implant isn’t changing who they are.


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