Monday, April 21, 2008

Sweet Nothing In My Ear

This might be a long one, bear with me....

Last night I watched the very interesting Hallmark movie called "Sweet Nothing in My Ear". The movie is about a couple who have a deaf child, and they are considering getting cochlear implants for him. For those of you who don't know, coclear implants are small electronic devices that can help a deaf or hearing impaired person hear better. For more information about cochlear implants, go to http://www.nidcd.nih.gov/health/hearing/coch.asp. The wife in the movie, played by famous deaf actress Marlee Matlin, is deaf herself, and is adamently against the implants. She feels that that would send a message to her son that something is wrong with deafness, that it is a disability that needs to be fixed or cured. The husband is hearing, and feels that his son should have cochlear implants in order to fit in better in the "normal" world. I found this movie absolutely fascinating and it raised some interesting issues, particularly, for me as a disabled person.

I always say that CP is engrained in me too much for me to want to be cured. It influences every aspect of my life: my friends, my personality, my views on certain issues. But I have considered the question of: what is crossing the line? What is going too far towards a "cure"? Cochlear implants do not "cure" deafness, however, they do make it so a deaf person can hear some things. Is that going too far towards a "cure"? Is that sending the message out that deafness does need to be "cured"? The mother in the movie seems to think so. However, I can also understand it from the father's point of view. He wants his son to hear music, to be able to talk with his voice as well as with his hands. He doesn't think his son is broken or wrong in any way. He just wants his son to have an easier life. But, as we all know, life is not supposed to be easy, and sometimes the right decision is not the easy one. Having a disability is not easy. Having CP is not easy, and it's made harder by other people's attitudes and stereotypes about us. However, having a not-so-easy life has made me stronger in many ways. I can't imagine life without CP.

I thought at one point in the movie, the mother made a good point. The parents were talking with a doctor who specializes in cochlear implants and hearing problems. The mother said "He won't fit into the hearing world because he won't be able to hear the things other kids do, and he won't fit into the deaf world because he won't be totally deaf." Then the doctor said "I think you'll find he gets the best of both worlds." That's not true. Sometimes being in between two worlds is harder than fitting into one or the other. As a person with mild CP, I often feel like I don't quite fit into the disabled world or the able-bodied world.

Gotta go, I'll post more later!

2 comments :

Andrea S. said...

Good post, and these are interesting questions for any disabled people to debate and consider.

Just wanted to make the note, however, that with Deaf people what makes it so much more complicated is that it's not just a question of "Is this really a disability?" or "Am I really that limited by being deaf"?

I think to really understand exactly why some Deaf people find the idea of cochlear implants so abhorrent you have to understand that for many Deaf people, being Deaf is a CULTURAL CHARACTERISTIC. It gives us entry to a community that has its own language (BSL if in the UK, ASL if in the US or English-speaking Canada, Auslan in Australia, etc.) It is a culture with its own set of "oral" (signed) literature, jokes, poetry, cultural norms and expectations, etc. Deaf people feel about as passionately about their language and cultural identity as pretty much any other linguistic minority.

So when you suggest that a Deaf person should be "cured" (and especially when it comes bundled with so-called medical advice to stop signing to your deaf child -- and it appears that there are some doctors who actually REQUIRE parents to stop signing as a condition for getting the implant) then that's a threat to their cultural and linguistic identity in a way that I think is very different from the kind of threat that other people with disabilities feel.

What you're talking about is I think more a kind of a bodily identity -- this is my body, this is the way my body has always been, and that has shaped the way I experience the world yada yada, so changing my body would profoundly affect my concept of self as it relates to my body.

Or for a person with neurological differences -- ADD, autism, bipolar, whatever, then you'd have to put it differently. This is the way my brain has always worked, yada yada.

But with the Deaf community, there's a much wider identity issue at work: This is what ties me to friends, possibly to family, to a whole wider community of people with whom I share so much in common (NOT just the shared experience of Deafness but the CULTURAL shared experience -- common stories and jokes and history and heros and norms and expectations, and of course the language itself); this is why I learned to use the language in which I think, breathe, make love, work, play, sleep, dream, live, give birth, and just BE.

I do respect that there is certainly a disability community also. To some extent even a disability culture. This is something I admit I didn't understand a few years ago before I started exposing myself to more cross-disability communities and experiences. And I have come to very much value that. But it's still not a culture in quite the same sense (or intensity, I think) as you see with Deaf culture.

Andrea S. said...

Good post, and these are interesting questions for any disabled people to debate and consider.

Just wanted to make the note, however, that with Deaf people what makes it so much more complicated is that it's not just a question of "Is this really a disability?" or "Am I really that limited by being deaf"?

I think to really understand exactly why some Deaf people find the idea of cochlear implants so abhorrent you have to understand that for many Deaf people, being Deaf is a CULTURAL CHARACTERISTIC. It gives us entry to a community that has its own language (BSL if in the UK, ASL if in the US or English-speaking Canada, Auslan in Australia, etc.) It is a culture with its own set of "oral" (signed) literature, jokes, poetry, cultural norms and expectations, etc. Deaf people feel about as passionately about their language and cultural identity as pretty much any other linguistic minority.

So when you suggest that a Deaf person should be "cured" (and especially when it comes bundled with so-called medical advice to stop signing to your deaf child -- and it appears that there are some doctors who actually REQUIRE parents to stop signing as a condition for getting the implant) then that's a threat to their cultural and linguistic identity in a way that I think is very different from the kind of threat that other people with disabilities feel.

What you're talking about is I think more a kind of a bodily identity -- this is my body, this is the way my body has always been, and that has shaped the way I experience the world yada yada, so changing my body would profoundly affect my concept of self as it relates to my body.

Or for a person with neurological differences -- ADD, autism, bipolar, whatever, then you'd have to put it differently. This is the way my brain has always worked, yada yada.

But with the Deaf community, there's a much wider identity issue at work: This is what ties me to friends, possibly to family, to a whole wider community of people with whom I share so much in common (NOT just the shared experience of Deafness but the CULTURAL shared experience -- common stories and jokes and history and heros and norms and expectations, and of course the language itself); this is why I learned to use the language in which I think, breathe, make love, work, play, sleep, dream, live, give birth, and just BE.

I do respect that there is certainly a disability community also. To some extent even a disability culture. This is something I admit I didn't understand a few years ago before I started exposing myself to more cross-disability communities and experiences. And I have come to very much value that. But it's still not a culture in quite the same sense (or intensity, I think) as you see with Deaf culture.