> 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).

  Children with autism or ADHD might struggle in some ways, but be better off in others.
  It seems clear that there is no objective reason they are worse than a neurotypical
  person, so if a "cure" to these conditions was developed, you would have some degree of
  moral quandary.

Someone with high intelligence but severely damaged executive functioning might look like the under performer in your team, but is giving all they have to work and still failing in silence, with their personal life being a giant mess.

Tangential, but I’m just going to point out that severe autism is absolutely debilitating. I think many people have only known people with what used to be called Asperger’s and don’t realize just how bad it can get.

My cousin with it needs to live in a group home. He’s barely verbal.

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".

As an autistic person with ADHD, I’m going to push back hard on this. They see absolutely disabilities. Actions that a normal person would think nothing of can leave me mentally drained for hours.

> Children with autism or ADHD might struggle in some ways, but be better off in others. It seems clear that there is no objective reason they are worse than a neurotypical person, so if a "cure" to these conditions was developed, you would have some degree of moral quandary.

I normally lurk HN but created an account because I see a lot of comments about this. Maybe I can offer some insight.

I was diagnosed with high functioning aspergers at a young age. After years of OT and work I am able to live a fairly normal life. I don't talk about it, and I could count the number of people who know on my fingers. It's hard for me to gauge this, but if you met me I doubt you'd realize unless you were looking for it.

To the world I look like I have things together, but there's nothing I wouldn't give to be normal. I don't understand the push to accept it over searching for a cure, if such a thing is possible.

While I'd agree with your point for a hearing aid, as per the article:

> While hearing aids are relatively speaking uncontroversial, the internal portion of a cochlear implant requires surgery, which of course entails risk

I don't know the scope of that risk. Might be fine, but the point is you have to actually find out what it is before doing it.

Not being able to hear "normally" sucks. I only developed hearing loss later in life but it's bad enough not hearing everything, sometimes just nodding along when I don't hear something because I already asked a hundred times that day and feel embarrassed about it. Not being talked to by others because they feel like you don't understand them. It's a huge disadvantage in terms of mental health and socializing. Imagining having that condition as a kid breaks my heart.

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.

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. In the same way that you wouldn't consider yourself disabled for being unable to see x-rays or detect magnetic fields.

> 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 as socially constructed, because certain conditions (e.g. being shorter than average), while limiting your physical abilities, are not disabilities because society generally provides for those conditions and extends equal access. If 50% of people were born Deaf, our society would still function, but it would address Deafness with affordances like the ones currently offered to short people.

To put it another way, despite e.g. being gay or short posing various social or physical disadvantages, we shy away from encouraging conversion therapy or height extension surgery by default, instead opting for a more inclusive society. And human beings are complex — a person who has found culture and meaning as a member of the Deaf community may disagree with you that they are "objectively worse off" for not having hearing, despite the obstacles.

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. I am lucky to not currently have to take a stand on the right choice here, but I think the complexity of the issue deserves more respect than to be dismissed out of hand.

I would like to recommend this book on the issue :

https://en.wikipedia.org/wiki/Stigma:_Notes_on_the_Managemen...

It shows quite well the tension between normality and the need for a community IIRC

> 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.

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).

How much money do things like this end up costing?

This certainly is a viewpoint

> They take me for a great listener, when in fact, I can't hear shit, and I'm desperately switching back and forth between people's mouths to catch what they're saying.

FWIW you sound like a good listener. It’s more about understanding than hearing and the dedication to understand what people are saying is the hallmark of a good listener. That said, I’m sure it helps that perception that you have to stare so attentively at whomever is talking.

> 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 those who... what? They don’t like surgery in general? They don’t like that specific surgery? Why would you even bring that up as a comparison to Deaf culture?

While I agree with you, the culture is coming from the sign language. Liver disease doesn't come with a shared language.

This seems like a really thoughtful compromise, a meeting-in-the-middle that keeps optionality as open as possible for the child.

edit: castellano not catalan

This is a study of people in their 70s. The vast majority of people with hearing loss in their 70s lost it late in life; they have no Deaf/HH community, they almost never learn to sign, and they often struggle to adjust for their loss of hearing.

The study you linked talks about reduced stimulation, and in particular _social_ stimulation:

> when an individual suffers from moderate to severe hearing loss, they are less likely to participate in social activities. Perhaps they are embarrassed about their hearing loss. Or they may simply find it unrewarding to attend a social event when they cannot hear what is going on.

People who are born deaf/hh , or who lose their hearing early in life, if they are allowed to access and participate Deaf/HH communities and spaces, simply do not have any of these difficulties in social contexts within those communities.

Martha’s Vineyard had an unusually high rate of congenital deafness for centuries [1]. It became a place where everybody, deaf and hearing alike, used sign language regularly. In such a society, being deaf was not a significant impediment to participating in social society at all; I am aware of no evidence that would suggest the dementia rates would be higher for the deaf residents just because of their deafness.

A disability is only a disability in a given context; for some conditions (eg advanced ALS), they are disabling in almost all contexts, while for others (eg a food allergy), they are disabling in a relatively narrow set of contexts. The relationship to dementia is caused by the hearing loss mis-fitting the individual’s context; people with the same condition but different contexts would not be deprived of stimulation and therefore not susceptible to dementia in the same way.

[1]: https://en.wikipedia.org/wiki/Martha's_Vineyard?wprov=sfti1#... (Martha’s Vineyard sign language is a major source for what became American Sign Language. The other was French Sign Language, which is why British Sign Language and ASL are quite different despite sharing the same local spoken language)

That study seems to have found that there is an association between dementia and concurrent vision and hearing impairment in elderly adults.

Also social isolation, much much earlier in life.

As a left hander, I highly recommend you don’t do this, I remember reading some article that forcibly switching handedness makes someone more stupid (severely paraphrasing here)

I don’t find left handedness super disabling, I still learned to use right handed things where necessary (mouse and violin mostly), but for the most part left handedness is adequately accommodated

Or if you have to talk to a visually impaired person. My vision impairments are on the very mild end of the spectrum, but they're still enough to prevent any effective use of or learning of sign.

I’ve seen two signers on a train platform pause their conversation while one got on the train, then carry on through the window after they’d found a seat. While the article is hyperbolic, there are pros and cons to all modes of communication.

My deaf coworker does not even know sign language, she uses phone for everything. She lives perfectly normal life.

Entire office is not going to learn new language, just to speak with an odd deaf person. And communicating specialized stuff like technical programming is not possible, gestures only cover basic words.

I think the bigger one is how does a signing person communicate in a situation where their hands are otherwise occupied and they can't stop using their hands for the other task?

If you need to communicate while operating a vehicle sign language seem to put you at a disadvantage for example.

At a distance works great, my friend (not deaf, but works in a school) taught her kids BSL (also not deaf) and recounted the story of how she was able to bollock the kids once in public across a hall.

She also had no trouble ordering a drink from her boyfriend (not deaf) who was standing at the bar some way away in a crowded pub.

Sign languages are indeed quite useful.

The article seemed a bit straw man and whining, as well as recycling old ideas, such as letting groups isolate themselves from others, but I confess I was too bored to finish reading.

My niece was born deaf and her parents went the opposite direction: they chose not to have her get an implant because of the risk of surgery at such a young age and being fortunate to live in an area with a sizable deaf community. They took ASL classes (my spouse and I joined them) and she’s now enrolled in a mix of ASL and English interpreted classes.

I agree that people can only make the decision with what they have at the time. After watching her grow up these last several years, her parents think they made the right choice.

No experience with CI, however:

SI has SSHL left side from infection. Dealt with it for 20 years, then an impact basal fracture degraded the right side.

Started with Apple Airpods Pro as aids. Now using Oticon CROS and Own. CROS works OK, Own works OK, but both are compromises, and have the overhead of using aids. Both have a different sound experience.

CI seems like another compromise. I am guessing stem cell is the golden ring - growing back the nerves.

I don't have personal experience with CI, but have researched it extensively as a potential fix for my hearing loss. From what I understand, the number of electrodes or links to neural tissue is the limiting factor. With something like NeuraLink with 1024 electrodes, the resolution of the sound signal can be much higher. For something like early cochlear implants, with 8 or 12 channels, the signal is going to be very digitized and artificial sounding; you have to heavily optimize for a particular type or modality of sound, and that's usually speech. That means all sorts of nuance things like music and voices get lost in compression, or filtered out entirely.

Cochlear implants are essentially BCI implants, taking the place of the cochlea in signaling via neural tissue.

To completely replicate natural sound, you'd likely need somewhere between 15,000 to 30,000 electrodes. It's not linear, however, and 8-12 electrodes might get you to sound that is about 25% of normal, and 1024 will get you to 85-90% normal. Full fidelity of sound, or even better, will be possible once we get implants working with many tens of thousands of electrodes. People will have senses that far exceed biological human limitations.

One neat thing with all of this is that due to plasticity, any connections on the neocortex can be trained to behave as if they're wired to any sensory organ; there aren't any hard limits on where an implant has to be connected. If you had an implant with 50k electrodes, half of them could be dedicated to sound, and the other half to sci-fi level possibilities like BCI mouse and keyboard control, simple virtual displays through modified sight, secondary audio channels, North sense, radar, electromagnetic signals, or immersion tweaks that modulate proprioceptive signaling.

1-500k would allow for convincing replication of normal sight, with the obvious advantage that with everything being digital, you'd be able to process your vision in software (Please watch this ad before waking! Skip in 10...).

With a million electrodes, you could get into convincing totally immersive full sensory simulation. There would be some resolution issues, initially, but we're some materials science, software design, and engineering problems away from full Matrix style simulations. 1 sq cm of neocortex is all you'd need for access to 1 million neurons - things are pretty densely packed, and all the neurons we need to access live on the outer surface of the brain.

Things are gonna start improving and the rate will accelerate, so hopefully we start seeing radical doublings of cochlear implant and other BCI capabilities in the near future.

TLDR; as much of normal hearing as possible is compressed down to around 100hz over 8-12 electrodes in a cochlear implant. This results in significant quality degradation compared to normal hearing, but it can be a huge boon to someone who is totally or profoundly deaf. Implant technology is experiencing a boom, and we're going to see a period of Moore's law like scaling of electrodes until implants reach parity with the rest of our computing technology.

Bipartisan probably isn't quite the right word there

This isn't really a conflict unique to membership in the deaf/hearing communities.

You can be the kid who stayed on the farm or the kid who left the farm for the big city, but you can't be both. You can be the kid who spends half the year on the farm and half in the city, or the kid who went to the big city for twenty years before returning to the farm, but those are different things.

We all only get one life to live. All we can do is try to pick a good path and enjoy the stories from people who picked different paths. A person who picks a hybrid path doesn't get to fully enjoy either path, but they do get to enjoy some of each, and they get to be the storyteller who tells the city kids about the farm and the farm kids about the city.

Who knows what the Deaf community is going to look like in 20 years when this kid is in college. Treatments for hearing loss are advancing and it’s likely that most of her peers will be in a similar position to her. 80% of deaf children born in developed countries receive cochlear implants.

Do you think bilingual kids have the same issue? I don’t.

The hearing... community?

An alternative framing would be that she gets to experience both to at least some extent, and isn't that better?

Have you met the undergrads at Gallaudet University? They live in both worlds.

The internal part can be replaced too.

The gain you get from implanting as soon as possible is massive compared to waiting it off. No one truly considering it should be waiting and instead actually pushing for an implant as soon as possible.

For our son, in the UK in 2019, they asked us to wait until our son was one year old. We insisted to have him implanted as soon as possible and us being ready to do it at 6 months (possible already in US). We managed to do at 7 months only switching surgeon to a much younger and keen surgeon that was pushing to lower the implantable age in children on the back of the massive benefits gained and very similar complication rate as close age brackets.

Our son is currently in mainstream school and doing brilliantly.