Tuesday, April 18, 2006

Cochlear implants and the politics of "Deafness"

Newsweek's "My Turn" section has a touching column by a woman whose hearing-impaired two-year-old son has made tremendous strides in hearing and communication after receiving a cochlear implant. The article does not mention that there has been strong political opposition to cochlear implants from "Deaf" activists. The capital letter denotes the fact that they see their deafness as a cultural identity, not just a disability -- in fact, they insist that they don't see it as a disability at all, and hence oppose all efforts to cure or "fix" it. Tragically, there are deaf children who have been denied an opportunity to hear by their own fanatical "Deaf" parents.

"Deaf pride" is a grotesque perversion of the disability rights movement (sometimes pushed by hearing people, such as Northeastern University psychologist Harlan Lane); and, insofar as it seeks to keep people -- including children who have no choice in the matter -- disabled, I think that "evil" is not too strong a word. Two columns I wrote in 2002 about this reductio ad absurdum of identity politics can be found here and here.


Pablo said...

While I'm sure this gentleman isn't the at the pinnacle of thinking deaf culture, here is an example of the grotesque perversion you speak of.

"Unite against the 'hearies'!" and all that...

It would seem that overcoming adversity would be a source of pride for any disabled person, not the disability itself.

Anonymous said...

The "deaf community" refers to the measles vaccine as having "decimated" their numbers. Sick, sick group.

I'm hoping that cochlear implants will become mandatory (or close to it) in a few years, as the technology becomes more and more reliable.

Anonymous said...

On the one hand, I can appreciate that a culture did develop because of the deafness. Certainly culture developed in any community that gathered under the spectre of disease.

But that doesn't mean that *fixing the original problem* isn't a good thing.

What it means is that, if preserving the culture is important, one must get creative about it. It doesn't mean that one denies the right to health to another because the culture needs defending.

Just saying.

bearing said...

Wouldn't it be reasonable to say that deafness is a disability, but that a culture of people fluent in (say) ASL also exists? And there probably are benefits to preserving that culture --- but keeping individuals without choice disabled for the sake of the collective is, as you say, evil.

There is one aspect of the cochlear-implant innovation that bothers me. Generally, the devices are not implanted until age two or three. Yet most of the key language development, and the brain development that's concurrent with it, optimally takes place before then. A child needs a "mother tongue," and needs to start learning it before age two. And if hearing disability prevents that from being a spoken language, shouldn't it be a sign language?

I worry that deaf infants and toddlers whose parents are planning a cochlear implant may not put the effort into early language acquisition that they should. Shouldn't a deaf child's home become an "immersion" in ASL as well as spoken English, up to and through the date of the surgery?

Just a thought. I think if I had a newborn with a diagnosed hearing disability, even if I expected a cochlear implant would eliminate it entirely, I'd hire a live-in, fluent ASL speaker immediately to get our whole family on board. And that has nothing to do with "culture" and everything to do with language and brain development --- plus the possibility that an implant wouldn't turn out to solve the problem.

Anonymous said...

Excellent article!

I am deaf/Deaf. Five years after your articles were published, little has changed, although the rhetoric against cochlear implants is rising as more children are implanted.

In fact, the protests at Gallaudet last year were less about administrative issues and more about preventing inclusion of other deaf/Hard of Hearing students, as well as cochlear implantees (CIs for short).

I wrote a satire regarding Deaf culture's hypocritical ways in an article I wrote, "Jesus Hates Deaf People." It explores the fact Jesus healed a deaf man, made a mute man speak - and both are against Deaf culture.

And yes, too many people cater to the very small minority of Deaf people who uphold all things related to Deaf culture far more important than anything else - including parents' choices of educational system (oralism, ASL, bibi and even CIs).

Sadly, it's going to get worse before it gets any better.

But, thank you for a great article.



Anonymous said...

It's not so much the fact that Deaf people feel there is a movement underway to "cure" deafness as it is so much a large scale genocide happening.
Changing a culture of a group, and eliminating it? It's genocide.

However, I am a CI user (deaf since birth, and with hearing aids for the first 20 odd years of life before implantation) and am of the opinion that deaf parents should implant their children. As young as possible.
When that child is then old enough to make their own decisions, they can then choose to be "CI Deaf" or throw away the headpiece and become "Deaf"
At least in the intervening years with an Implant, they will have discovered speech, sound and be able to talk.

Theres nothing worse than being deaf and grunting like a hippo in heat as you sign.

Anonymous said...

I'm a little disturbed by this whole conversation, particularly by cal's response. You want to make brain implants MANDATORY for deaf infants?

If the surgery were not so invasive, and if the success rate were a little bit higher, I would feel better about parents implanting their babies at 6 months, but as it stands, it still freaks me out. Cochlear Implants are not a magic pill. While they can make it much easier for deaf children to acquire speech, their long-term effects are not understood, and not every deaf child is a candidate for an implant, even those who are profoundly deaf.

Because language acquisition happens so early, it makes sense that this is such a contentious issue. Both sides get to scream THINK OF THE CHILDREN and nobody tends to listen to one another.

The way I (a hearing person) feel, along with a majority of my Deaf friends, is that the decision of whether to implant a deaf child is one that has to be made individually by parents. And in order to make that decision they have to understand their reasons for deciding one way or another, and raise their child in a way that is appropriate to their status, probably something along the lines of what bearing said above.

The fact remains that Deaf culture is real, and for the time being at least, it is not going away. Nor should it. That there is some friction between Hearing people and Deaf people is a natural product of two cultures with different experiences and interests living in the same place. I think I would be pretty offended if someone who didn't understand who I was or where I came from started telling me about the "right way" to raise my child. Deaf people have been putting up with that kind of thing since there have been deaf people, so I understand the "anti-Hearie" sentiment that sometimes arises.

Things are a little different now from how they were fifty years ago, but making it illegal not to implant deaf children would still be a human rights violation. It's an individual's decision, or their parents, and that's how it should be.

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