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bigstrat2003 2 days ago

There are few things that make me angrier than trying to hold back cures for deafness because of "cultural erasure" or whatever the phrasing is. It is utterly reprehensible. To try to keep someone disabled (yes - disabled, not "differently abled", they are objectively lacking a capability that a healthy human has) just so that there are more people in your community is objectively evil in my book. It is directly doing harm to people for one's own benefit.

If a person wishes to not get a certain treatment - fine, that's their right. But when one starts trying to keep others down, that's not ok.

retrac 2 days ago | parent | next [-]

I said "not disabling", not that deafness is not a disability.

Those two things mean different things to me. Obviously deaf people cannot hear. Not able. Dis-able. Deafness is a disability.

But not all disabilities are generally disabling of individuals. The only disability that deafness causes is a lack of perception of sound.

Hearing people have a panoply of inferences about what that means -- about how it disables and how broadly it disables. And most of them are faulty. It doesn't result in isolation, in particular, in a deaf cultural context. In fact in the deaf cultural context about the only thing missing is some auditory alerts that would be nice as a visual complement, and some aspects of music and the like. Yes. Birds chirping is beautiful. I miss it deeply. It'd be nice to have a world where every kid gets to experience that.

But all of the social and emotional and cognitive consequences imagined of deafness, are not innate to the lack of hearing.

MintPaw 2 days ago | parent | next [-]

I'm empathetic to this argument, but there needs to be some kind of differentiation between preserving culture and abuse for the sake of community. I can imagine the same argument applying to a cult with cruel traditions, or hazing in general.

smaudet 2 days ago | parent | next [-]

It's more than that (not deaf either) - if suddenly there is a new therapy to grow a third eye in the back of your head, should you?

Or should a fish be able to breathe without water?

In both cases there are ways to function without fundamentally altering the body, and neither is wrong.

It is not so clear that there is "abuse", when there is an empathetic standard of living.

Now to me, the best argument for taking this is that deaf people do have ears, whether or not they function. So it is reasonable for them to experience sound, but also, they have a right not to, if they so choose.

What I think is harder, if you have experienced neither, to be able to make that decision well. And nobody is talking yet about reversing such a therapy...

guerrilla 2 days ago | parent | prev [-]

Abuse by who? It's themselves who are against adopting it. It's just autonomy at work.

og_kalu 2 days ago | parent | next [-]

Parents and children ?

Sure Adults opting out of such treatments on such grounds is fine. Parents doing so to their children, not so much.

I mean you can't exactly go, "We'll wait for them to be old enough to make the decision for themselves" for hearing.

UltraSane 2 days ago | parent | prev [-]

Abuse of deaf children. Being able to cure deafness in a child and not doing so isn't much worse than intentionally making the child deaf.

squigz 2 days ago | parent | prev | next [-]

I'm not deaf, so I don't know about the lived experiences of people who are. But I am extremely visually impaired, and if someone said something along these lines about being blind, I'd be... annoyed. Thankfully, people don't often say things they would about being deaf, about being blind, which I've always found a bit odd.

Perhaps I'm misunderstanding, but are you basically saying that there's no real negative aspects inherent to being deaf, outside of those imposed by society?

smaudet 2 days ago | parent | next [-]

Being able to see was more evolutionary pertinent to us. Same with smell...

Animals that can hear extremely well (owls for instance) rely on this trait to be able to survive.

It's always been more important to us to be able to see versus hear things, we evolved our large brains to take advantage of symbols and information. You can hear a symbol but it requires relatively a lot of energy to relay that over any long distance. In contrast, a smoke signal is visible for many many miles.

Things that are seen tend to be more durable, too. A scream lasts for only an instant, but the signs of a scuffle may last for days or weeks. A carving in stone can last for hundreds of years... and many of the things we eat can be seen but not heard (well).

So it is a far bigger deal to us to be blind than to lack any of the other senses.

BeetleB 2 days ago | parent | prev [-]

> Perhaps I'm misunderstanding, but are you basically saying that there's no real negative aspects inherent to being deaf, outside of those imposed by society?

This is a valid question. My gripe is people aren't asking the obvious other questions:

1. What are the positive aspects of deafness?

2. What are the different aspects of deafness (neither positive nor negative, but leads to a very different human experience).

If either of these significantly outnumber the negative aspects, I can see why imposing a treatment on children without the parent's consent is problematic.

squigz 2 days ago | parent [-]

> 1. What are the positive aspects of deafness?

I think a more appropriate question would be, what are some positive aspects of being deaf, that are unique to being deaf? As you point out a few times, a positive aspect of being deaf, and the main reason it's 'not disabling', is because there is a community around it. But that is not inherent to being deaf, since non-deaf people also have communities; indeed, those same deaf communities could exist as they are even if their members were cured

> 2. What are the different aspects of deafness (neither positive nor negative, but leads to a very different human experience).

Can you elaborate on some of these?

> If either of these significantly outnumber the negative aspects

Also, I surely hope this isn't a simple matter of numbers, right? I mean, surely one has to weigh the severity of the negative aspects in this. "Not being able to hear" is but one negative aspect, but it's a pretty big one.

smaudet 2 days ago | parent [-]

Perhaps one advantage that even deaf people might not appreciate - being at "peace".

There are many who can hear who crave little or no sound. Being unable to hear is a (semi?) permanent mute button. No noise, just your thoughts and whatever you can see.

The biggest downside to being deaf? Missing out on omnidirectional communication. Whether that be hearing the telltale sounds of a critter in the bush, or conversing with someone without sight, that would be the major disadvantage.

That being said, it isn't perhaps as big an issue as one might imagine - bear attacks don't happen only to deaf people, plenty of people get hit by buses they could have heard, and often nobody listens to the intercom anyways (sometimes it is inaudible over general noise).

The next biggest, probably music. But again, a lot of music is objectively bad (stressed loud notes that are designed to attract attention versus complex or thoughtful melodies), when you reduce many vapid pop songs to their linguistic components, you might suddenly find you aren't missing out on much...

I can hear, and I appreciate the convenience. However I also struggle to find auditory peace without jamming my ears with plugs, and I appreciate the calm and quiet... I'm not sure my quality of life is that much better as a result of being able to hear.

bigstrat2003 2 days ago | parent | prev [-]

I apologize - I should've been more clear but I wasn't taking issue with your post. More that I've seen people in the past who don't want treatments for deafness to even be available, and your comment made me think of that position (which does quite upset me).

BeetleB 2 days ago | parent | prev | next [-]

Sorry, but they are differently abled. Their brains and perceptions are different from people who can hear. You are assuming that those differences are all negatives. They do not believe that to be the case.

Many people here self-diagnose as Asperger's. Can you not see why they would not want a "cure"?

Being an extrovert objectively gives you great advantages in (most) societies. As an introverted parent, I would definitely fight any "cure" for my introverted children.

Furthermore, if both parents are deaf and the kid is not deaf, there's a good chance that in the first so many years of life, the kid will have poorer mental development than the deaf kid. Not quite the same, but an example: Deaf kids born to deaf parents hit the same language milestones as hearing kids born to hearing parents. But deaf kids born to hearing parents do worse, because the parents don't know the appropriate way of thinking/communicating.

Related: Deaf kids who were given cochlear implants, but no sign language training fared a lot worse than both hearing kids and deaf kids who learned sign language.

crooked-v 2 days ago | parent | next [-]

As someone who's on the autism spectrum, I think there's an immense qualitative and quantitative difference between someone's brain working differently and the straightforward presence or lack of a specific physical capability.

I'd still be cautious because there's the long-running tendency for any kind of 'cure' for anything inheritable to be used as a eugenics bludgeon, but that's about society rather than the direct effects.

BeetleB 2 days ago | parent [-]

> I think there's an immense qualitative and quantitative difference between someone's brain working differently and the straightforward presence or lack of a specific physical capability.

In this case, the lack of a specific physical ability results in that person's brain working differently.

kortilla 2 days ago | parent [-]

Not really. The brain compensates in communication skills since it has no auditory processing to deal with.

But it’s otherwise normal. They don’t magically become extremely technical or have other specific positive traits that come from being deaf.

pie_flavor 2 days ago | parent | prev | next [-]

Lacking a sense that someone else has is straightforwardly negative. If being able to hear isn't better than not being able to hear, then nothing at all can be said to be better than anything else. Whether Asperger's is different is irrelevant.

victorhooi 2 days ago | parent | prev [-]

See - I don't get this. I've heard people mention it about the deaf community, but it just doesn't make sense to me - perhaps I'm missing something.

I have congenital hearing loss in both ears, and wear hearing aids. I don't know ASL (at least not well enough to use), as I am more or less able to function with hearing aids, with the usual caveats - background noise, group settings, still quite reliant on lip-reading and context to fill in gaps etc.

Within my financial means, I would glad pay to wave a magic wand and restore my ears to "normal". This gene therapy sounds interesting, but I'm not sure if that mutation is the cause of my hearing loss. And I'm always wary of side-effects, haha.

I do see my hearing loss as a disability - and no matter how much you try to dress it up, or with "don't diss my dis-ability" PR campaigns - it still does suck every day. I'm not saying you should discriminate against people for their disability - and I've steadfastly advocated for increased accessibility to level the playing field (e.g. in my workplace, at church, in the community). But I'm not exactly Matt Murdoch or Echo here.

And yes, I'm also "neuro-diverse" (starts with A) - and yes, I guess you could argue there's advantages there, under specific circumstances. But there's most definitely a penalty there.

BeetleB 2 days ago | parent | next [-]

I don't doubt your experience at all. The question I have for you is: Can you speak for all deaf people? I'm not saying everyone who is deaf is fine. But I do know that for many (even if a minority), it is fine, and it is different enough that they worry their kid will not have the experience they had, and may have a worse experience (in some ways) with hearing.

It's not a clear cut easy decision. I would say one should understand and respect the parents' decision. They know the factors way better than I do, and likely in many ways better than you do (especially as you don't know ASL).

I work with a deaf person (not born that way, but been that way most of her life). I'm sure she'd pay a hefty sum to get normal hearing - partially because her whole family (kids, etc) are not deaf. Even when she openly talks about the advantages of being deaf. If she did have a deaf child and chose treatment for her kid, I'd totally understand. But if she chose against it, I'd also totally understand.

What I don't get is people insisting they are totally wrong/evil for not pursuing the treatment for their kids. Almost always they don't understand the factors at play.

dd82 a day ago | parent | prev [-]

to be honest, you;'d have the same issues with that said magic wand and normalcy, because hearing aids do amplify sound and allow you to hear everythig.

You'd have the same issue, if not more, with background noise, group settings and context acquisition

Processing input is the hard part, if you're already having issues, that isn't going to go away

nashashmi 2 days ago | parent | prev | next [-]

Do people and society with intentional lack of computers make you angry as well because those people see benefits for their culture not to have one? I think you believe being disabled is a really bad situation but they believe it is a heightening of other senses, and that is something you cannot relate to.

bigstrat2003 2 days ago | parent [-]

No, because not having a computer isn't a distinct lack from one's natural capabilities in the way that deafness is. Moreover, my issue here isn't with people who don't want to cure their own deafness, it's with people who don't even want such cures to be available for others. So in the computer analogy this would be more like someone who tries to protest the existence of computers at all, rather than simply choosing to not get one

nashashmi 2 days ago | parent [-]

> distinct lack from one's natural capabilities in the way that deafness is.

The original commenter wanted to state that deafness can and should be seen as a natural occurrence, instead of a disability, that pushes people to better use other faculties. In the computer analogy, it would be someone who protests the use of computers entirely like for school children, to push them to use other skills.

I have a specific “disability” that I often cannot smell (because of allergies). I have learned to “feel” smell with my fingers running through the air. In such a situation, am I really disabled? Despite how important smell can be especially with spoiled foods? Few would think so. This deaf commenter sees his deafness in the same manner. And sees efforts to broaden people’s senses in the same manner as children being given calculators and computers at an early age.

TRiG_Ireland 2 days ago | parent | prev [-]

There are few things that make me angrier than people who have very strong opinions on subjects they have only just become aware of.

khazhoux 2 days ago | parent [-]

Where do you see in the parent comment that they've "only just become aware of" this issue?