Deaf Culture and cochlear implants

Great Debates
1

I saw a program on ‘Dateline NBC’ tonight about a family, many of whom are deaf, who were actually quite happy being so, and WANTED their children to be deaf too. I’m STILL mulling over that one.

They were once very close, but now the hearing members of the family have gotten an implant for one of their twin boys, one of whom was deaf. It is busting the family apart. One of the terms used by the deaf uncle thoroughly opposing the implants was the diminishing of the ‘deaf culture’, a term with which I wasn’t familiar.

I had thought that if the blind could see, the handicapped could walk again, that anyone would leap at the chance to be ‘whole’, and this made me rethink what ‘whole’ means, and that to some people, the ‘handicap’ is in the eyes of the beholder.

If there is a ‘deaf culture’, then is there one for every handicap, and are they as intent on staying in that particular spot, no matter what advances science could possibly render in the future? Which side would YOU be on, I know if I had the chance to gain what I hadn’t experienced, either through sight, or sound, or walking, I’d ‘leap’ at it. And I find myself puzzled as to why someone WOULDN’T leap at it.

Any thoughts?

2

Didn’t see the show.

I think the biggest opposition to these cochlear implants is that the technology improves every year. Due to the nature of the implant (I believe it destroys some anatomy), some people debate the benefits to growing up with hearing versus waiting a while for the technology to improve.

The hearing impaired fare better than the blind as something like 80% of our sensorium is visual. I still see no reason why, if some hearing can be assured, no matter how poor, you should give it to these kids. I mean all we are talking about is letting them function closer to normal.

I have not heard the phrase “deaf culture.” The hearing impaired do get along really well in our society, however. Again, I think that is due to the fact that we are far less dependent on hearing than on sight. I can see how they could be united on a number of common fronts – a different language (ASL), a different way of perceiving the world. I can see how the word “culture” could be applied.

Obviously the debate is what is best for the child. I can see how members of the “deaf culture” could regard cochlear implants as unnecessary – almost like cosmetic surgery. As a future member of the medical and scientific community, though, I would probably counsel for cochlear implants – we are still talking handicap, and anything to alleviate the handicap IMHO is a good thing.

3

I think deafness is probably unique from other disabilities because there is a common language shared among the deaf. That language not only brings them together, but serves as a certain isolating factor with the rest of society. So that would certainly give a sense of community.

I was pondering what I would do if I was deaf and offered the chance to hear. I believe I’d take the opportunity, but not without some apprehension. It would mean major life change; having to learn to understand the spoken language, sort sounds, etc.

What I’m not sure is if I would actually keep the implant. I mean, the world is a noisy place. Just think about how much noise we push to the background in our daily lives without thinking about it. I think I’d be frustrated by the constant presence of sound.

For some reason, I can understand why the deaf would be hesitant to be able to hear.

4

I believe that cochlear implants do not work on everybody, so the family may be resistant in case it doesn’t work on some of the siblings. Also, if only certain members in the deaf family receive the implants, it could cause alienation among themselves.
I would imagine it is expensive to do, and that insurance most likely wouldn’t cover it.

“Deaf culture” is a phrase used to describe the general closeness of the Deaf. Many deaf children, regardless of whether they have hearing or deaf parents are sent to boarding schools for the deaf. Many are instructed in the Oral method, where the theory is to have them communicate with the hearing world through speaking and lip-reading. But speaking is really hard if you don’t know how to make a sound. Many still end up learning American Sign Language if they live in the US, but each country has it’s own form of sign language. It allows them to communicate with each other is a more easily manipulated and understandable way. ASL also has a different grammatical structure than English.

I personally believe it is the parent’s choice to decide whether the children should receive the implant and that it is not a entirely terrible thing if they do not receive one.

5

Don’t count on its always being such a great deal for the blind to be able to see, either.

Vaguely recalling something from the New York Review of Books a few issues back where they were talking about recent research on sensory development: apparently people who were completely blind from birth till late childhood due to a correctable condition, and then had that condition corrected by surgery in adolescence or adulthood, had horrible experiences with vision. Couldn’t perceive motion properly, couldn’t perceive spatial depth properly, couldn’t do pattern recognition—tremendously disorienting stimuli, and the malfunctions were permanent.

It seems that if the neural development for sensory integration doesn’t take place during infancy and early childhood, then even if you get vision in later life, it just won’t work right. Like living in one long hallucination. I’m not sure I wouldn’t rather stay blind than have to deal with something like that. I still shudder at the thought of the subject who could see cars when he crossed the street but couldn’t see them actually coming toward him—one instant there was this pattern of cars and the next there was that pattern of cars but they had no meaning as a temporal sequence. Some subjects never learned to recognize faces or to recognize objects in paintings or photographs. Yikes. I’d probably still be keeping my eyes closed all the time anyway.

6

I had wondered about the effect being able to see would have on a person blind from birth, in, say, their 20s before getting a transplant. I figured that they’d not be able to recognize the objects they knew by touch. Kind of like me trying damn hard to see that darn 3-D whatever in those darn 3-D posters without knowing what it’s supposed to be beforehand. Just a mass of lines, colors, vague shapes and nothing with definition.

I also have read of resistance by the deaf to their ‘members’ getting implants or even to marrying a ‘hearing’ person. Some get real ‘racist’ about it.

Lately, with the advent of genetic research and potential correction of defects in the womb, the ‘little people’ have begun to protest. They are the result of genetic defects, not to be confused with the rare midget - which is a small, properly proportioned person. They have figured that if the genetic research goes well and can eliminate such problems before birth, ‘They’ will no longer exist.

Kind of makes on think, doesn’t it? One belongs to a select and limited group, fought for most of your life for recognition, jobs, against discrimination, and even to find a partner or a place to live and now you have it.

And now there is the possibility that in a few decades, your branch of the species will be extinct.

The blind don’t seem as resistant to medical advances in ‘seeing’ as some groups, like the deaf are to hearing.

On one hand, I can understand it. For a couple of hundred years, the disabled have fought to adapt, get recognition, keep from being abused and used, treated as second class citizens, learn to live in a hostile ‘normal’ world and gain rights and independence.

Now, through the marvel of medicine, their particular handicap rights that they fought for might be eliminated by way of cures.

Interesting, is it not?

7

Yeah, the plasticity of the cortex is a funny thing. If you lose sight then the area can be recommitted to another sense throughout life. So, when they say the blind can hear better, this actually is partially true. Same thing with just losing an eye. Brain space is not wasted.

Adults who have had their vision restored (after being bling for years) indeed could not visually perceive the world, even after therapy. Oliver Sacks wrote of one who after a few months of living with sight basically reverted to his blind lifestyle even though he had reasonable acuity.

The thing is that the reverse may be more difficult – these cases are often early onset/congenital cataracts, and there is a simple operation to restore vision. The cortex has been recommitted to another sense, so it is nearly impossible to take that back, even if sight is restored.

This happens quickly in the first 6 years of life. Strabismus (lazy eye) must be corrected in early life in order for the brain not to “tune out” that eye. Even if the lazy eye is corrected, the damage cannot be reversed and visual acuity is never 100%.

I don’t think this is the same for hearing though. I remember one of the early cochlear implants – it basically just inputed pure tones into the auditory nerves, and was perceived as such. Adults who had lost their hearing (by sclerosis or arthritis of the ear bones, etc) had the cochlear implant, and heard the world at first as a series of pure tones. The brain, however, learned to decode the tones, and after several months, the adults basically heard voices and could distinguish female versus male voices, etc.

Since these implants are put usually into children, I don’t see a problem with cortical plasticity.

8

Speaking as a member of a group whose common characteristic was considered a tragic disability not thirty years ago, as well as a person whose supposed mental illness has actually saved me a lot of grief and enriched my life, I think I have a little bit of perspective on this issue.

My autism was pretty much generally conceded to be an unmitigated disaster that the sooner done away with, the better for me. And there are plenty of people who feel the same way about my homosexuality.

But my inability to receive social cues prevented a lot of destructive conformity patterning and gave me a unique and valuable perspective on the world.

As for my homosexuality - well, I’ve gone into enough detail about that, god knows.

It has been difficult. But we all have our own row to hoe. And if I could snap my fingers and become straight and mentally normal, I wouldn’t. Not for anything.

I presume that the Deaf people who so strongly resist the idea of a “cure” are doing so for the same reason: their Deafness has given them cultural opportunities and richnesses in their life that would otherwise have been denied them and which they feel counterbalance the difficulties and lack of access they’ve suffered. And they resent, as much as I would, well-meaning people telling them they’re irrational for honestly recognizing benefits and joys that others refuse to.

9

I’m more or less half deaf in one ear, and I know that I’d never be part of the deaf community at large. It’s mostly because I’m an oral- that is, I use speech, not ASL.

Remember Heather Whitestone, the Miss America from a few years ago? Some members of the deaf community were really upset because she was an oral too, despite being almost completely deaf. She didn’t learn ASL until her teen years, IIRC.

I went through first grade completely deaf in my right ear. I had surgery that made it the level it is today, and I remember how hard it was for about a year- I had horrible balance and spacial problems. I couldn’t tell how far away someone was from me, and I couldn’t walk in a straight line without really, really trying. (Heck, I still can’t… it was just a lot worse.) Despite having normal hearing in my left ear, I had a huge adjustment to go through. I don’t doubt that if my hearing was restored completely I would go through the same thing.

It’s not as simple as getting normal hearing- the adjustment can be insurmountable for some.

10

**

Was there some reason your parents, teachers, or doctors felt this way?

**

At what cost? If there’s no downside then I don’t see how this could be a handicap. Personally I feel that despite being able to receive social cues I was able to avoid destructive conformity and I have a uniqe and valuable persepective on the world. But then all my friends are exactly the same way. (ha ha I tried to make a joke) Sure I disagree with you a lot on philosophical but I’ve never suspected you of having autism or some other mental “quirk.”

**

The original poster was speaking of a darker side of this attitude. The parents actually wanted their child to be deaf. Personally I find this to be a bit disturbing. And when one of the children decided they wanted to hear they were upset.

Well I hope they aren’t the same group of deaf people who demand closed caption on television and in movie theaters.

Marc

11

My brother has been deaf since birth and, although I don’t fully understand it, there does seem to be a separate “Deaf Culture”. There’s certainly the language difference (he considers it a separate language). At first, I did not see this because I learned sign language as a word-for-word translation of English. But seeing deaf people communicate with each other, I can begin to understand the differences (different grammar, fluidity, and even artistry). I think a big part of Deaf Culture is the sense of community and empowerment. Deaf people tend to feel left out of “normal” society, even in their own families. Other than closed captioning, little is geared toward deaf people. At family gatherings where everyone is chatting away, a deaf person misses out on a lot unless someone is willing to translate all the ongoing conversations. The sense of community is amazing. Deaf people gather together from far away. My brother went to a school that was a 45 minute drive away from 1st grade thru high school. Now, he thinks nothing of driving anywhere between Boston and D.C. to visit friends. For a while, he and all his friends had email/pager systems so they could keep in constant touch. Also, deaf people (at least some claim this) seem to be more visually perceptive of the world (as you might expect). So, they can feel like hearing people are blind to some of the things they experience (another communication barrier) (I’m not talking about anything supernatural here…it’s more like picking up on more details and more body language, etc.).

When we were kids, we’d go to a camp for the deaf. So in a way, I was immersed in the culture. At that time, I did not notice much difference, but I was just a kid who was used to having deaf people around. Now that we’re adults, I’m seeing him take deaf culture more and more seriously.

My brother and his deaf girlfriend both do not want those implants. They seem to have something against having a hole drilled in their skull and then have a portion of the implant stick out from behind their ears. :eek:

They also hope to have deaf children someday, which I can understand, but I can’t really hope for too. Maybe I should.

FWIW, my brother has always had both hearing and deaf friends and girlfriends, but he’s been closest with other deaf people.

12

Mrs. Kunilou was trained as a teacher of the deaf, so she always watches programs like this with great interest.

There is a separate deaf culture. It exists among those who were born deaf and have primarily been taught to speak through the manual alphabet/American Sign Langauge.

Members of this culture don’t consider themselves to have “lost” their hearing, since they never had it to begin with. They resent the term “hearing impaired” since they don’t consider their culture to be an impairment. They prefer to be called “deaf.” They don’t like oral education (lip-reading) because at best a lot of stuff gets mixed and at worst some people simply don’t possess the talent for it. They prefer manual communication, which gives them a complete language to work with.

And some of them feel that if you offer them an operation that could change their defining characteristic, then you’re saying they aren’t valuable as they are. I suppose at the most extreme they could consider such an operation as mutilation.

If this sounds odd to you and me, let’s consider the following hypothetical.

Do you accept that it’s easier to grow up white in the United States than as a member of a racial minority?

If you were a member of a racial minority, and someone offered you an operation that could give you white racial characteristics, would you have it done to you? To your children?

13

Possibly this is repetive, as similar things have been voiced above, but here it is, boiled down.

In our culture, we’re taught that we’re all equal, that handicaps are just part of diversity, that people with handicaps are valuable members of society because even if they can’t do certain things that an unhandicapped person can do, they are still capable of accomplishing a great deal, and they can offer useful perspectives, and they have inherent equal worth simply by virtue of being a human being.

When technology produces something like cochlear implants the world at large says, “Hey, great, another handicap can be eliminated!”

But the folks who have the “handicap” say, now wait just a minute! You told us that we’re equal to you. If we’re equal, why do you think it’s so obvious that we should change? Was that just lip service all along, because you felt sorry for us? If a cochlear implant makes us “better,” what does that mean for those of us who, for whatever reason, aren’t suited for the implant? Or for those of us who choose not to get the implant? Is the Deaf me less valuable that the hearing me?

(Just to be clear, I’m not deaf–just trying to state things from that point of view.)

14

Maybe our antidiscrimination policy for the handicapped did too good of a job?

Well, no one forces any handicapped/impaired/‘different’ person to accept any corrective technology, so the operations can be used for those newly deaf or who previously had sight and all.

It is interesting, now that it’s been brought up, to realize how well such policies actually worked because when I was young, the ‘impaired’ were ‘cripples’, deaf, dumb, blind or wheelchair bound. No handicapped ramps, doors, parking or rights.

I just watched a program where a blind man uses tongue clicks as echo location and is so good at it that he can determine what is in front of him, like an animal, car, store, planter, post or door. Using his other senses, like smell, he can even determine what store he wants. He teaches other blind people this technique. I was impressed with the speed and confidence he and his student moved through a strip plaza.

I find it fascinating to watch deaf people communicate with each other. They are so much more visually expressive and use intense body language. The movie ‘Children of a Lesser God’ was great to watch.

For myself, I can’t imagine loosing any of my 5 senses, especially sight and hearing, though being born without them is another thing entirely. If you have never experienced them, you don’t know what you’re missing.

15

I guess this all boils down to the old adage: “Better the devil you know!”

(Satan, in this case, present company included ;))

There was a time that thought this position by the deaf community amounted to nothing more than a kind of mass ignorance and hysteria. After reading the story of Oliver Sacks and the blind patient who had his vision restored I became somewhat enlightened.

I still believe that in many cases where hearing was lost due to an accident or illness, it’s return would be overwhelmingly welcomed back. However, giving something back to a person who has never had it to begin with could be a bit of a problem. Especially when it concerns one of the primary senses with which we examine and percieve our world. Imagine suddenly gaining the sense of touch or smell when you have never had it. Imagine the kind of mental overload that can present to a person who’s never had their neural pathways mapped for that kind of input.

16

And now I shall wade into un-PC waters where angels fear to tread.

I don’t buy the relevance of the hypothetical. Yes, being black can be disadvantageous at times, but then being any race can be disadvantageous at times. That’s a question of attitude and morals, and those things are subjective a fluid.

But being deaf IS A DISABILITY. I’m sorry, I know there’s a deaf culture, and I know the disabled are every bit the human beings anyone else is, but being deaf is a very significant physical affliction. We’re not talking about a simple cultural difference here, no matter how some might want to frame the discussion in those terms. We’re talking about the loss of one of a human being’s most fundamental sensory devices, the loss of which significantly impairs communication abilities and opportunities for enjoyment of one’s surroundings, and is a genuine safety hazard.

Being black is a not a disability. A black person is not incapable of communicating with other human beings, listening to music, or hearing the truck barreling towards them.

Wishing one’s children will be deaf is exactly equivalent to wishing they’ll be paralyzed, blind, or missing an arm.

17

[QUOTE]
*Originally posted by RickJay *
**

** RickJay ** you’ve struck the same note that got me last night watching the show, the deaf father WANTED his child to be deaf, so ‘she’d be LIKE ME.’ Excuse me?? I thought as parents, we want to make things BETTER, not to be the same, so that I feel better about MYSELF.

He also said he thought ‘kids who sign look so cute.’ He has cut himself off from the rest of his so called ‘close family’ because of his brother getting the implant for their twin deaf son.

I do appreciate ** Phobos, matt_mcl, beakerxf and kunilou’s ** outlook. If you haven’t ever heard, the world IS a noisy place, and it is wonderful to have the advantages of gatherings of like individuals. But, I’m still at a loss, to HOPE your child has a handicap that you happen to have.

You’ve all added a great deal to the musings that I’ve had since seeing the show. I had not heard the term ‘deaf culture’, nor was prepared to see what appeared almost bigoted towards people who DO hear, that families would split over a thing like this. That still seems amazing to me.

18

Then how would one frame the the question? To the deaf community, it is a cultural difference.

If you’ve never had something to begin with, how is it a loss? And how does their deafness “significantly impair” their communication abilities and their ability to enjoy their surroundings, as well as being a genuine safety hazard? How is that any different from someone situated in a culture where they cannot understand or speak the language (e.g. - Mexican immigrant who cannot speak or understand English)?

Uh, not exactly. To those who hear (and have had their hearing all their lives), they may consider deafness the equivalent of paralaysis, blindness, etc. To the deaf community, I would venture to say, they do not.

You’re equating deafness = disability = attribute that engenders cultural attitude toward said disability = hey! that person is NOT like me = not a good thing. While many in the deaf community equate deafness = nondisability = cultural attribute that deafness engenders = hey! another person just like me = good thing.

19

I’m at a loss too. This was a very recent bombshell statement from my brother and I have yet to sort it out. My first reaction was the same as RickJay’s last statement. But more and more lately I am realizing the separation he feels from family/society, so he has wondering.

Anti Pro - Of course parents want things to be better for their children. But, at the same time, they also want a strong connection to their children (including physical, behavioral, and cultural resemblences). This is an extreme case.

20

**

Well most deaf people have a hard time communicating with those that can hear. If this weren’t the case there wouldn’t be a deaf community now would there? There are occupations that the deaf are automatically barred from because their lack of hearing presents a hazard to themselves and to others. Soldiers, fire fighters, and law enforcement are just three I can think of off the top of my head.

**

You can learn to speak another language but you cannot learn to hear. Plus a Mexican in this country can still hear a car barreling down on him.

**

Which explains why they pushed for closed caption.

It is a disability and no amount of word games will change that. Being deaf is not a good thing. Would you want to be deaf?

Marc