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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 actually the same as being able to hear. Give the kid the hearing aid, and if they don't like it they can take it out later.

There are plenty of things where this "different, not worse" narrative holds up. 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. But someone without hearing is just objectively worse off than someone with it, the same way someone without legs is worse off than someone with legs.

The last part is what really gets me about this. The child values the hearing aid so highly that they literally hug it as they go to sleep, and this is somehow presented as a "both sides are right" outcome. To me at least, that's a pretty conclusive endorsement that kids should be given these things.

I can't see anywhere any mention of the fact that the implant portion of the Cochlear implant has been improving. It might be prudent to consider that in the future more capable implants might be available. AFAIK implants can't be removed and upgraded. So it might be a consideration that a child could have a superior implant by waiting a couple of years.

Of course the external portion of CI are being upgraded over time. But they will always be constrained by the implanted portion.

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 so when he turned 18 instead of buying a new car I bought a surgery because crying children piss me off.

There is no deaf world.

There is only the world.

This entire debate is insane.

Nobody is going around telling pediatric biliary atresia patients to not get a liver transplant because of "not having a functioning liver" culture. There are an infinite multitude of analogous situations where an "x" culture or "x" world would be considered direct evidence of mental illness or cult behavior but due to the inertia of history here we are.

edit: 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?

As the hearing brother of a deaf sister with hearing parents, what I usually tell people is to learn sign language and get the cochlear. Forcing only cochlear on the child means that the family does not live in the deaf world with their child, while only speaking SL might distance them and cause them to miss out on a lot in the hearing world.

It reminds me of basque spain, where everyone speaks catalan and some people continue to speak euskera at home or with friends they know can speak.

as a foreigner, the language used is baffling (for example: "rarely addressed in moderate, bipartisan terms" that comes out of nowhere)

"Botticellian baby"[1] "Many perfections". "I had a stubborn sense that her deafness was not a pit she had fallen into, but just one of many extraordinary discoveries about her that I was making every day." This is coming across as denial.

[1] https://en.wikipedia.org/wiki/File:Botticelli_04_Louvre.jpg

I'm "almost" a lifelong user of a cochlear implant. I got my first one when I was 9. Before I got it, I was communicating through lip reading and speaking, I never knew sign language. Lip reading I still use relatively often -- when I'm at a crowded restaurant, or at an unbearably noisy party, and there's many interlocutors at the table, I persistently stare at their lips. 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. I'm out of shape and this takes so much of my brain power to understand people that I often cannot contribute my thoughts.

Though my cochlear isn't perfect, I would never think of not getting it. In fact, I'd probably be rather angry at my parents for not helping me get one as soon as it was possible. During my childhood and up until late college, I've only ever met one person who was so severely hard of hearing and was about my age, and that was where I have been getting my speech lessons before I got my first cochlear implant.

I like this pragmatism because it sheds light on the realities of life. People live their experience in a muddy grey world, which is far less crystal than any activist would like to imagine. Activism thrives on polarizing individuals and circumstances, more so off-late. We could call it politicization. Either way, I believe that it’s more harmful than helpful. That polarizing the PoVs of individuals makes them more apathetic for those that hold different views.

The piece that was beautifully described by the author (paraphrasing) - “we can follow X while acknowledging that this isn’t how things should be, that it’s unfair - yet this is how the world is today”.

On a similar level, but less consequential for sure, being left handed creates an additional step/mental block for individuals in a world that mostly defaults to right-handedness. I consciously nudged my own child towards being more right-handed for this reason, because I didn’t want them to have this additional piece to process on top of the already complex life they were going to have by likely inheriting my ASD.

To dismiss deafness as merely a "disability to fix" shows a lack of understanding about Deaf culture and identity. Saying, “Deaf people are worse off because they can’t hear” is like claiming left-handed people are “worse off” because most tools are designed for right-handers. It’s not the person that’s deficient—it’s society failing to accommodate diversity.

Another frequent comment, “Give them an implant and let them choose later,” oversimplifies a complex issue. Cochlear implants don’t restore “normal” hearing—they produce robotic, limited sounds, which don’t work for everyone. Choosing implants without teaching sign language cuts children off from the Deaf community and a rich cultural identity, leaving them stranded between worlds.

Claiming that Deaf culture is “something to decommission” as if it’s outdated is not only ignorant but deeply offensive. Deaf culture is rooted in a shared language, history, and identity, much like any ethnic or linguistic community. Would you advocate for erasing small languages because they’re “less useful”? Of course not—diversity enriches us all.

The idea that “the world is designed for hearing, so fix deafness” ignores a simple truth: the world is designed by hearing people, for hearing people. With accessible design—visual alerts, captions, and sign language inclusion—Deaf individuals thrive without needing to be “fixed.”

Instead of framing deafness as a deficiency, let’s respect Deaf individuals and their right to choose how they navigate the world—whether through implants, sign language, or both. Empathy means listening, not dictating.

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 life we will probably wait for Decibel Therapeutics / Regeneron to finish their GJB-2 gene therapy before we have that child. If there are constraints then we will have a cochlear implant or simply not implant that embryo.

It was obvious to us how it should play out. My wife and I have an obligation to maximize the cone of possibility for our children and a duty to equip them best to experience the world so that they can choose the path through it that they wish.

Just like I would not pierce the eardrums of my child after she is born, I shall not intentionally choose an embryo that carries a debilitating condition that I cannot remedy or mitigate if I can choose otherwise. I don’t think this is a dilemma in any way. There is an obvious choice for us. We will not deny her normative sense organs. My parents got me glasses and contact lenses. My life would have been much less vibrant if they had chosen to not provide me those prosthetics.

Some parents are not so fortunate as us to have this choice. I hope modern therapeutics will enable all children and adults to have the full range of sensors that most humans carry.

> it is unarguable that only signed languages are easily accessible in all situations

Even in the dark? Or at a distance? Or not facing the signer? Or with arthritis?

Differently abled folks are entitled to their own culture and beliefs. Yet claims like that seem to be trying too hard to find a silver lining.

I have two deaf daughters, both have cochlear implants and I’m very happy with the decision. My wife and I both learned sign, and let our kids wear or not wear their cochlear’s as they see fit. The youngest is too young to really understand but the oldest understands and almost exclusively selects to wear them. She is in main stream school but does spend time with her dhh friends. She 100% prefers to be with other dhh folks and sign, but likes being able to hear.

All in all the decision is yours to make and people can weigh in or tell you what to do. We got a lot of hate from Deaf community members for going down the road of implants, but we also got a lot of support. There are hatful people in all walks of life. Do what you think is best and love your kids.

I'd certainly urge someone to get a cochlear implant. Deafness and even being hard of hearing carries a known increased risk of dementia.

https://www.health.harvard.edu/blog/want-to-reduce-your-risk...

The outright selfishness of Lane, Humphries et al. is mind blowing, and publicly advocating for it would (in the modern world) rightly lead to ostracism in any other context.

It is nothing more and nothing less than "I suffered, so you should suffer, too" -- the same attitude that keeps the "culture" of female genital mutilation alive.

Leftism and its consequences have been a disaster for the human race.

Saying this as someone who is hearing but close to the deaf community in college and knows ASL. By trying to give her the best of both worlds she is going to diminish both worlds. Not fully in the deaf community and not fully in the hearing community.

Anyone here with SSHL have experience with CI? I've heard mixed things due to the rather different sound experience vs natural hearing.

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.

Will just say, there are many different causes of Deafness. And therefore outcomes vary a lot depending on what the exact condition is. If the issue is with the auditory nerve for example, cochlear implants won't solve anything. And the whole debate can go in some other direction entirely.

Is there such thing as an extensible or upgradeable cochlear implant? My understanding as a layman in audiology is that the silia or tiny hairs are essentially emulated or designed manually at specific frequence-reverberations and this results in some quantifiable Resolution of Hearing. My question is, is there a way or maybe a hardware technique where we could, as equipment improves and nano-scale is reached, add more "hairs" to the board? If not, can someone please make?

I wrote a commandline app that takes a youtube URL (or path to any audio or video file that ffmpeg can read) and converts it into a transcript using the Whisper model and then optionally translates or summarizes it using OpenAI. It's been incredibly useful for chewing through my youtube backlog, but it might also be hugely useful for the deaf or hearing-impaired. It uses Nix to manage dependencies, although I got clever about making that not necessary (I don't like forcing Nix on people until they're ready for it)

https://github.com/pmarreck/yt-transcriber

This is mainly useful for single-speaker videos that are conveying information.

Most other solutions out there that claim to do this only download the closed-captioning and summarize that, but MANY YouTubes do not have a good closed-captioning track, in which case my method still works. (Note: Aiming for Linux/Mac compatibility but have only tested it on Mac so far)

I next want to convert it into a simple web service and/or perhaps Docker image to democratize this out to everyone. (I don't know if I'd be able to afford to host since the CPU/GPU cost for running Whisper on spoken audio is not insignificant, but it should work fine on anyone's local machine assuming they have the hardware for it.)

I also want to add speaker identification (something called "diarization"), possibly by going to WhisperX or other solutions out there, which would make this more useful for multi-party conversation audio.

In other news, I'm looking for contract work (I'm just doing side projects like the above to keep myself busy and, ideally, useful). My last job was Director of Engineering for a startup, but due to having a toddler I wish to remain work-flexible for the time being. https://www.linkedin.com/in/petermarreck/

“Blindness separates people from things; deafness separates people from people.” ― Helen Keller