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The cochlear implant question

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Re: The cochlear implant question

#141

Post by sdwr »

h0l0cube wrote: post #131
h0l0cube wrote: post #107

Earlier quoted context omitted.

Species come and go. Should we be concerned about the existential threat to species such as homo sapiens? Why should we limit ourselves in the present day to protect our biosphere? Everything is inescapably transient after all? Nihilism is perfectly fine as a philosophical argument, but few would support it in practice

Can’t tell if the downvoters think I’m the nihilist, or they are the nihilists.

I think they are taking issue with escalating an already dismissive argument to infinity. It's Godwin's law - even if you're calling the other guy Hitler, you still brought it up in the first place

Re: The cochlear implant question

#142

Post by James_K »

giraffe_lady wrote: post #136
James_K wrote: post #120

Earlier quoted context omitted.

> but the extent to which is it disabling is a function of the individual's relationship to society No it's not. It's a function of the person's relationship to glasses. The same way deaf people are no longer disabled when you restore their hearing. The only difference is that we can all obviously see that depriving children of glasses for the sake of forming a "blind community" is an utterly ridiculous thing to do.…

Man what do you want to use as shorthand for the entity that produces hearing aids, glasses, wheelchairs, and medicine? And describes why some people have access to them and some don’t? I'm open to a novel nomenclature here I'm just pointing out that there already is an established framework for talking about and thinking about this stuff we could use instead.

Obviously not "society". I've yet to hear of anyone purchasing a pair of glasses from society. When disability advocates refer to society as cause of disability, they are not talking about specific individuals or corporations, but the wider commonalities between individuals and organisations.

Re: The cochlear implant question

#143

Post by h0l0cube »

sdwr wrote: post #141
h0l0cube wrote: post #131

Earlier quoted context omitted.

Can’t tell if the downvoters think I’m the nihilist, or they are the nihilists.

I think they are taking issue with escalating an already dismissive argument to infinity. It's Godwin's law - even if you're calling the other guy Hitler, you still brought it up in the first place

I’m pointing out the argument’s absurdity. Saying that things don’t last forever to justify destroying something you don’t value, can easily be redirected to something you do value

Re: The cochlear implant question

#144

Post by Balgair »

stoical1 wrote: post #126
Balgair wrote: post #114

Earlier quoted context omitted.

Aside: We're teaching the kiddos ASL but all of us are hearing. Yeah, it is a different language and culture as a result. Not any worse or better, just different. You have to be a lot more expressive in ASL to get the points across and just more active in general. Also more patient as it takes longer to communicate, but maybe that an 'us' thing. We like it a lot, and it's a lot of fun really. We;re thinking of tutori…

"All of us are hearing" really? We already use sign language, we already use our entire body to communicate, infact 55%, more than we do speaking and listening.

I mean, there is a pretty big difference between how your body language affects your communication and like 'Where is the apple?'.

Re: The cochlear implant question

#145

Post by arjie »

sssilver wrote: post #70
arjie wrote: 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?

I made some quick notes that I'll fill out on this here https://wiki.roshangeorge.dev/index.php/IVF#The_Cost

It cost us about $25k for a cycle to extract and $12.5k to sequence all. Then implantation costs a bit more, but I'm still getting that information. We paid a while ago, and I don't recall off the top of my head.

Re: The cochlear implant question

#146

Post by arjie »

janeerie wrote: post #77
arjie wrote: 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 have the same mutation and have a deaf son (we had no idea we were carriers until after he was born and failed the hearing screening). I've often wondered if we had decided to have another child if I would have done IVF and selected a hearing child. And I don't think I could do it. It's not rational at all, but it would feel like a rejection of my son (who is doing amazing with his cochlear implant).

Glad to hear the cochlear implant is working well. It's fortunate that the condition we both carry is remedied through a prosthetic like that. It definitely assuaged some of our fears to have that option. If it comes to it that I can have a third child in the future, I will hope that Regeneron has their GJB-2 gene therapy ready, but if not we may well take our chances with the implant.

Re: The cochlear implant question

#147

Post by snakeyjake »

lcnPylGDnU4H9OF wrote: post #137
snakeyjake wrote: post #101

Three years ago I paid $47k for my deaf nephew to get implants because his fully-insured deaf parents wouldn't pay for them. Not $47k just the out of pocket ($2k-3k-ish). I paid $47k and I got a deal because it was cash. They wanted him to live in and embrace the "deaf world". He wanted to live in the actual real world. They ended up nearly irreparably fucking up his life and denying him the only thing that he wanted…

> Maybe I should have not gotten a spinal fusion because of the rich tapestry and long history of "living in constant excruciating pain due to degenerative disc disease" culture? Surely you can argue better than to provide such a clear and obvious false equivalence. It is a matter of fact that there is a distinct culture among those who communicate via sign language and not so that there is a distinct culture among t…

Coming up with unique cuss words using ASL isn't culture but let's suppose it is.

Not only do member of that culture have no right to attempt to persuade or bully or pressure people into remaining in their culture in order to keep it alive, people who do that should be harassed and ridiculed until they stop out of shame and/or risk to their position in society.

It is irrefutable, unquestionable cult-like behavior to criticize someone who doesn't want to be like you for not wanting to be like you.

Warning sign #5 you're in a cult: "There is no legitimate reason to leave, former followers are always wrong in leaving, negative or even evil."

Re: The cochlear implant question

#148

Post by d0mine »

jl6 wrote: post #97
crystal_revenge wrote: post #90

Earlier quoted context omitted.

> 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 th…

Cultures come and go, arising from circumstances that can change. Does preservation of a living culture take priority over the wellbeing of its members? Perhaps a culture is something that can be decommissioned humanely.

English is the dominant language at the moment. Should Quebec abandon French? Should Europe? The rest of the world?

Re: The cochlear implant question

#149

Post by d0mine »

Workaccount2 wrote: post #60
James_K wrote: 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".

disability/fix is a one-dimensional language. Real world has many degrees of freedom (more than one is for sure). Thinking in tradeoffs instead may be beneficial.

Re: The cochlear implant question

#150

Post by mrangle »

Ethically speaking, there's no choice. ASAP cochlear implants will allow the child to have the normal audio language input that is absolutely required for normal cognitive development. Deaf people, without implants and no audio language input in childhood, will have curtailed IQ from what they would have had.

The "deaf is perfect" subculture was inevitable and has precise parallels across disabled populations. That doesn't mean that it is logical, strictly speaking, and that parents are required to respect it. I'd argue that parents are ethically obligated to help their child avoid a massive disadvantage and have absolutely no obligation to deafness as a wider culture.

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