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The cochlear implant question

aeon.co

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Re: The cochlear implant question

#81
post #72

Earlier quoted context omitted.

There are ways you can present being deaf as an advantage. I personally think it's excessively reductive, but there are those that say, for example, that you become more attuned to your other senses when you lose your hearing, or even that area of the brain can be repurposed for other tasks. They may say, therefore, that the only reason being deaf is a disability is because the world is designed for non-deaf people.…

Saying the world is designed for people with hearing is causally inaccurate. Hearing evolved because sound is a useful way to perceive the world, the same way vision evolved in the spectrum it did because those are the strongest frequencies of sunlight. And more generally, I don't see many things in my everyday life with exclusively audio feedback. Usually anything designed with an audio cue just uses it to reinforce…

A non-trivial part of our artificial world is designed on the tacit assumption that listening to spoken language is what we do.

Re: The cochlear implant question

#82
post #59

My wife and I faced a similar situation and found it a simple decision. We both carry GJB-2 gene mutations that will likely result in profound non-syndromic hearing loss. We went through Orchid Health to get a whole genome sequence of our prospective embryos and then selected one that was not affected by the condition. We have 1 more carrier girl and 2 more unaffected girls to work with, and if we want boys later in…

> We went through Orchid Health to get a whole genome sequence of our prospective embryos and then selected one that was not affected by the condition.

It's pretty nuts to me that we're at this point now. Eugenics is about to become mainstream.

Re: The cochlear implant question

#83
post #76
post #47

I feel like the narrative around disabled people has advanced to the point where some now insist that they aren't disabled. In reality, it's a pretty objective fact that being disabled means being unable to do something. It is a net negative on someone's quality of life. I'd be jolly pissed off if my parent decided not to get me an implant that enabled me to hear just because someone had told them that being deaf was…

> In reality, it's a pretty objective fact that being disabled means being unable to do something. This isn't an argument for or against the comment or the OP, but this is not universally seen as objective, and there are more ways to think about this than the medical model where there are "normal" people and that disabilities are deviations from what is "normal". Many disabled people and experts on disability see it…

> we shy away from encouraging conversion therapy or height extension surgery by default

Because these things are dangerous and ineffective. You can point to clear negative consequences that come from doing them at a mass scale. Again, I go back to the idea of "different, not worse". Being gay is not the absence of straightness, and being short is not the absence of tallness. But being deaf is the absence of hearing. You just get less.

> This article I think does a good job of explaining the quandary of a parent faced with a "fix" for a condition that is challenging but through which people have developed identity and culture

You could say the same of cancer, but a fix would be very appreciated. Anything that makes people's lives worse will create a community, but I don't think this is an argument against resolving that problem. What's contradictory about this is that these people saying the solution is bad also demand their problem be fixed. They just say that the fix should be implemented at a global scale. Instead of a simple implant that restores hearing, they want the entire world to be made accessible to people without hearing. If this was fully achieved, it would have the same effect as restoring their hearing. There would be no struggle, there would be no community. Being deaf would be just as unusual as being short. Yet I've never heard opposition to making things more accommodating to deaf people. Essentially, their issue isn't with the problem being solved, but that this solution to the problem is too effective.

> Many disabled people and experts on disability see it as socially constructed

They are wrong. Even without society, the disability would exist. The only social construct is the threshold for how badly something needs to affect you before it is considered a disability. While it's true that we can, through science, reduce the degree to which a disability affects a person to the point it falls below that threshold, this is just curing disability. The fact that a disease can be cured doesn't make it a social construct. The only real point to be had here is that the word "disabled" is a social construct, but this is a meaningless statement. All words are social constructs. That's just how words work.

Re: The cochlear implant question

#84
post #76
post #47

I feel like the narrative around disabled people has advanced to the point where some now insist that they aren't disabled. In reality, it's a pretty objective fact that being disabled means being unable to do something. It is a net negative on someone's quality of life. I'd be jolly pissed off if my parent decided not to get me an implant that enabled me to hear just because someone had told them that being deaf was…

> In reality, it's a pretty objective fact that being disabled means being unable to do something. This isn't an argument for or against the comment or the OP, but this is not universally seen as objective, and there are more ways to think about this than the medical model where there are "normal" people and that disabilities are deviations from what is "normal". Many disabled people and experts on disability see it…

Hearing people by definition can do something that deaf people cannot: HEAR SOUND.

Being able to hear is basically a superpower if you are deaf.

Re: The cochlear implant question

#85
post #47

I feel like the narrative around disabled people has advanced to the point where some now insist that they aren't disabled. In reality, it's a pretty objective fact that being disabled means being unable to do something. It is a net negative on someone's quality of life. I'd be jolly pissed off if my parent decided not to get me an implant that enabled me to hear just because someone had told them that being deaf was…

There are ways you can present being deaf as an advantage. I personally think it's excessively reductive, but there are those that say, for example, that you become more attuned to your other senses when you lose your hearing, or even that area of the brain can be repurposed for other tasks. They may say, therefore, that the only reason being deaf is a disability is because the world is designed for non-deaf people.…

We don't have food that's only detectable with x-ray vision and we're not food for predators that are hiding in the x-ray spectrum who pop out and attack you with that advantage, so not being able to see in x-ray is not a comparable disability.

Re: The cochlear implant question

#86
post #72

Earlier quoted context omitted.

Saying the world is designed for people with hearing is causally inaccurate. Hearing evolved because sound is a useful way to perceive the world, the same way vision evolved in the spectrum it did because those are the strongest frequencies of sunlight. And more generally, I don't see many things in my everyday life with exclusively audio feedback. Usually anything designed with an audio cue just uses it to reinforce…

A non-trivial part of our artificial world is designed on the tacit assumption that listening to spoken language is what we do.

The world was dark half the day for much of human history. Communicating in the dark is clearly easier with noise than signing or passing tactile writing around. It's not like we just invented noise for the fun of it, it's just a better medium in most situations.

Re: The cochlear implant question

#87
post #59

My wife and I faced a similar situation and found it a simple decision. We both carry GJB-2 gene mutations that will likely result in profound non-syndromic hearing loss. We went through Orchid Health to get a whole genome sequence of our prospective embryos and then selected one that was not affected by the condition. We have 1 more carrier girl and 2 more unaffected girls to work with, and if we want boys later in…

How much money do things like this end up costing?

Must be nice to be rich.

Re: The cochlear implant question

#88
post #47

I feel like the narrative around disabled people has advanced to the point where some now insist that they aren't disabled. In reality, it's a pretty objective fact that being disabled means being unable to do something. It is a net negative on someone's quality of life. I'd be jolly pissed off if my parent decided not to get me an implant that enabled me to hear just because someone had told them that being deaf was…

Yeah as someone with a disability (juvenile arthritis) I hate this a lot. If I could take a pill and be cured of arthritis forever I would do it, and I would hate my parents if they decided to not give it to me because of some insane idea about arthritis being my culture. The deaf community in particular is really weird about this but I think it's pure delusion to think that giving a kid a hearing aid if they need it is wrong in any way.

Re: The cochlear implant question

#89
post #47

I feel like the narrative around disabled people has advanced to the point where some now insist that they aren't disabled. In reality, it's a pretty objective fact that being disabled means being unable to do something. It is a net negative on someone's quality of life. I'd be jolly pissed off if my parent decided not to get me an implant that enabled me to hear just because someone had told them that being deaf was…

A common thread across all the disability groups is an intrinsic desire to normalize it, a drive towards a world where everyone has the disability and therefore no one is disabled. Prune it down and it is simply "You can fix something by developing a fix, and if you can't do that you can fix something by redefining what "fixed" means".

It starts becoming a problem if this evolves further into "ignore or fight an actual fix when it's available", and then into "if it ain't broken, break it, so it's "fixed"".

Re: The cochlear implant question

#90
post #47

I feel like the narrative around disabled people has advanced to the point where some now insist that they aren't disabled. In reality, it's a pretty objective fact that being disabled means being unable to do something. It is a net negative on someone's quality of life. I'd be jolly pissed off if my parent decided not to get me an implant that enabled me to hear just because someone had told them that being deaf was…

> being deaf was actually the same as being able to hear.

That's not even close to the argument being presented.

The fundamental crisis within the deaf community is around the fact that deaf people share a common language. This is very different than most other disabled communities. Language is fundamental to shared culture.

To be clear, I'm not saying that deaf children should not be given cochlear implants, but the issue is much more complex than "being deaf is the same as being able to hear." It's that deaf people historically felt a sense of shared community and culture. The ability to "fix" (a term many of them would not agree with) deaf people leads to a challenging position where a culture is slowly being destroyed.

It's much closer to the choice white American parents who adopt Asian children have around what culture should those children be exposed to and how much. Is it okay to raise an adopted Chinese child exactly the same a white American child? Should the adopting family try to learn Mandarin? Teach the child them about Lunar New Year? Make friends with other Chinese families in the community? There's no absolutely correct answer for any of these questions, but they are issues families in these situations must navigate.

I suspect your immediate response is that being Asian isn't a disability, but I would point out the first point in my comment: deafness, unlike other disabilities, does have it's own distinct culture because of shared language (not shared disability).

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