I'm not sure anyone can say better or worse, in a useful fashion, objectively - more options can also lead to more ambiguity and stress, as with anything in life.
They're not wrong to say that by necessity, your experience is going to be different if it's defined in terms of choices made before you had agency, that are not mutable - your lived experiences are going to be very different if you cannot hear at all, and spent 10000 hours or w/e framing everything in your life around that, versus being able to hear.
Unfortunately, I think absent something else, this will go the same way as most narratives of cultures where there are utilitarian reasons to not remain in it - people will often choose the route of most visible potential benefit, in these situations.
Something more "ideal", in theory, would be if we could ignore critical periods, and just let people choose in adulthood to learn verbal language, but even that presents the problem that the majority dictates the "easy" option, and by nature, people who are not in that group will sometimes be the ones acting as sandpaper on rough edges in that interaction, as they're not as well-polished. (Look at all the government systems in the US that don't know how to handle more than the common "firstname lastname", for example.) So even that option presents the problems of utilitarian optimization resulting in rational actors just opting out of the more demanding route.
e: Just to be clear, I'm not trying to say I think any of what I just described is "good" - I think homogeneity in human experience deprives everyone of enrichment in the variation of life. But I don't see a way to optimize for this where given the ability, a lot of people don't choose the lower-friction route in their lives.
Yes, this has been the problem. Many in the Deaf Community do not see being deaf as "bad", but that is the label society has put on them.
I think you're missing the point entirely.
There are many different cultures in the US. Some are more similar than others. There is a Chinese culture in the US - as someone not part of it I'm content to call it one, but I'm sure those in it know of differences that I cannot see.
Eventually most people figure things out and make the most of it in adulthood, but it definitely makes for teenage/young adult identity crises that monocultural people don’t have to deal with.
The former group has more issues fitting in, while the latter seem to be just fine. Certainly plenty of people in Europe speak more than one language natively and don’t feel like they lack a home. And it’s not like there is an actual country where only deaf people exist. So the idea of avoiding bilingualism seems totally absurd to me, especially when probably the majority of the world has some level of bilingualism by default.
I will add that most people do not understand how divided the Deaf Community is about Coclear Implants. Least of all what you hear is not like what we would hear. It sounds like a robotic voice.
https://journals.sagepub.com/stoken/rbtfl/3WBTL0klZP48Y/full
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.
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.
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 want to gently push back on this. While sign languages do have signs for common, “basic” words (ASL has a lot of 1:1 mapped signs for English), sign languages are languages. They can, and do, express “specialized stuff”.
I have two coworkers who are deaf and they absolutely communicate specialized medical and technical concepts to each other and other people who use sign language. It’s amazing to watch them sign to each other, as someone who is only intermediate at ASL.
This part just absolutely and categorically untrue.
I've personally witnessed people whiteboard code using only ASL on multiple different occasions.
We've negotiated imperial territory disputes and hired mercenaries on contract with pantomine. You get there eventually if you're motivated & creative. It's about how efficient using the language for that purpose is. If it lacks a lot of specialized jargon, that jargon needs to be unpacked into symbology that does exist in the language both people are trying to use.
With any language learning, you revert to more basic forms in a sort of puzzle of "How do I say that?" if you don't have a deep exposure to the vocabulary. An elementary learner might use twenty words of clarification to be certain of communicating meaning where an expert uses six.
With ASL, reverting to fingerspelling to bridge gaps in either person's vocabulary or in the existing corpus of well-known ASL vocabulary is also common.
But fingerspelling and using long strings of basic words is painfully slow compared to higher bandwidth formats. If two people speak two languages, they can just pick the one that has the best mutual SNR, which allows for the most concise effective communication. Sometimes, that's going to be written text typed into a phone instead of ASL, and sometimes it's going to be the other way around.
Perhaps I should say "not economically viable". We could also use morse code, but it is just not very practical.
> you revert to more basic forms in a sort of puzzle of "How do I say that?
So we are playing "guess what" and pantomime at working hours. Wonderful!
> reverting to fingerspelling to bridge gaps in either person's vocabulary
Typing on phone or keyboard just seems more practical. Or using pen and paper....
This is covered in (among many other places) the introduction to the Wikipedia article on sign language: https://en.wikipedia.org/wiki/Sign_language
Sign language is way more than just gesturing. I did not see read that link from the above post, regardless, gestures are fundamentally a semiotic expression of meaning with the body rather than speech.
Like sounds, one can create a basic Piercian sign, and build onto that sign.
I believe that sign language has the unfortunate implication of being composed exclusively of gesturing. The word “sign” is confusing as well, especially when “sign” signifies (pun intended) a set of commonly understood meanings in linguistics. Body language, gestures, manual expressions all are just parts that come together and become more than the total of sum parts.
I see spoken and sign languages as two different tools that can do similar job with different features and weaknesses. Like python vs go vs JavaScript.
Dictionary meaning of gesture.
> Sign languages (also known as signed languages) are languages that use the *visual-manual modality to convey meaning*
From the introduction to the wikipedia article.
Sign language is definitely made of gestures, at least by my understood definition of the word gesture.
By doing such you can communicate anything technical.
It's like if you write a long jargon phrase and then define an abbreviation in parentheses. Next time you can use the abbreviation. If the abbreviation becomes well known enough (especially in certain groups) then you may be able to omit the definition altogether, especially if you already know your audience.
I'm not sure about schools "manufacturing their own gestures" but sign languages tend to have regional dialects and shared jargon, much spoken dialects and jargon. It could be that these signs are simply regional variations, or that a single sign hasn't become dominant.
When I go to the doctor's office and someone interprets for me, I don't have trouble understanding the doctor.
Please don't speak so assuredly about things you clearly don't understand. https://en.wikipedia.org/wiki/Sign_language
I agree with the 1st sentence however. You don't have to know sign language to be content or happy with your life, even if you are deaf.
Same as...
Entire England is not going to learn new language, just to speak with an odd French person.
This also is proof that sign language works in the dark.
What I've noticed is that in deaf-blind contexts plain ASL is terrible for back-channeling information... is the listener paying attention? Agreeing? Disagreeing? Laughing? Protactile communicates these back to the signer using touch, and not touching is considered rude.
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.
If you need to communicate while operating a vehicle sign language seem to put you at a disadvantage for example.
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 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.
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.
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
https://www.health.harvard.edu/blog/want-to-reduce-your-risk...
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)
> 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.
This has been my life experience since the late 60's. It's my life right now.
You replied...
> 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.
As someone who's been hard of hearing for most of their life, I'm curious exactly where these "HH communities" might have been in 1969, or the 70's, or 80's, or even now in the 2020's? Beyond the occasional subreddit that is. I suppose in elementary school the teachers could have put me in special ed classes. Or made me sit in the front of the class all the time. I'm glad they didn't do either.
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/
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.
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.
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.
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".
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.
My father has hearing aids and has had them since he was probably in his mid 60s, I'm just pushing 50....
...but to my point, Apple recently released their 'kinda hearing aid' tech (from what I can tell just a custom EQ and passthrough for the mics in the airpods).. and man it's fucking great. I'm probably not ready yet for 'real hearing aids' and they are so fucking expensive to boot.. but having this 'half measure' has been really useful for me.
> 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.
My cousin with it needs to live in a group home. He’s barely verbal.
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.
This doesn't make them not disabilities, it just makes them disabilities with societal affordances. Even if we accept what you're saying here, these people are still less able to do things in the world, because much of the world doesn't provide those affordance, so they're restricted to the places that do.
Even in those places, there are still limits to the affordances provided - even people have the idea that in the US, employers can't discriminate against disabled people, they absolutely can if the disability affects their ability to do the job. Warehouse jobs routinely discriminate against those who can't lift 50 pounds as a matter of policy.
> 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.
I hear the argument, and I don't necessarily disagree that people find meaning from these kinds of communities. Nonetheless, there's a difference in that a hearing person is still able to find community (though obviously not the exact same community) but can also hear, while a deaf person can only do one of those two things.
When I was a kid in school, the phrase "differently abled" was in vogue, and it always seemed sort of ridiculous. It's not like you get other abilities for being deaf or having a missing leg or being paralyzed - you just have fewer. The only example I can think of where the phrase is really appropriate is for people with autism, who often are better than non-autistic people at some tasks as a result of their autism.
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.
The impairment doesn't go away, but the extent to which is it disabling is a function of the individual's relationship to society. Two people with the same impairment can have different degrees of disability based on accommodation. We can both have bad vision but if I can afford glasses and you can't, only one of us is disabled by it.
This is the social model of disability, it's a well established framework that has had immense practical value in the medical treatment of a huge range of disability, including adhd and hearing loss. It's so so shitty to dismiss it as "they are wrong" when you clearly don't even know the absolute basics of the history and practice of this field.
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.
What I'm saying is that there are two different cures for deafness. The first is to engineer a world in which it is not necessary to hear, and the second is to restore the individual's hearing. I am of the belief that there is no substantive difference between these two methods as it relates to the argument being made against cochlear implants. Of the two different cures, that is more effective which is the soul issue people take with it.
> This is the social model of disability, it's a well established framework that has had immense practical value in the medical treatment of a huge range of disability, including adhd and hearing loss.
The conclusion they reach is that a disability can be treated by altering the environment of the person with it. I reach this same conclusion without the need to reference some abstract "society" which causes all these problems.
> It's so so shitty to dismiss it as "they are wrong" when you clearly don't even know the absolute basics of the history and practice of this field.
Well they are wrong. If you find the truth to be shitty, I suggest you bury your head in the sand.
Being able to hear is basically a superpower if you are deaf.
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).
This is problematic. Who, but the members of a living culture, can determine any of these questions? My understanding is that most cultures are self-preserving, until they aren't, usually through conquest or other external forms of eradication.
I don't see the problematic aspect of "curing" the child's deafness before they become a member of the Deaf community. It's not removing someone from the Deaf community. Deontologically, it ought to be fine, surely? (I'm looking at this deontologically, because from a utilitarian perspective, we should be asking what is the correct percentage of otherwise non-deaf children we should surgically make Deaf.)
Because you do have such a threshold, and you consider things that fall below that threshold not to be "culture", and therefore not to be worth preserving.
Which leads to: How do you justify this choice of threshold?
Nihilism is perfectly fine as a philosophical argument, but few would support it in practice
I agree that your reductio ad absurdum argument shows that "nothing deserves to continue" is in untenable position. But surely the opposite extreme (namely, "everything deserves to continue") is just as absurd?
So the question remains: Where to draw the line?
(Although, given the child will continue to need a cochlear implant or similar device, they'll still be disabled either way, and nothing is stopping them from learning sign language too.)
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 tutoring in ASL for the fam, but like, we don;t have the time to even cook dinner, haha.
I'd say give it a try with your kids.
We already use sign language, we already use our entire body to communicate, infact 55%, more than we do speaking and listening.
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
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.
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.
Yeah, what I've heard is that a lot of people do it, don't like it because it's really not the same as before, so they wind up going through the whole process only to abandon it.
Fascinating stuff about implant tech though.
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.
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 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.
It's pretty nuts to me that we're at this point now. Eugenics is about to become mainstream.
[1] https://en.wikipedia.org/wiki/File:Botticelli_04_Louvre.jpg
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.
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.
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?
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?
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."
Of course the external portion of CI are being upgraded over time. But they will always be constrained by the implanted portion.
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.
If you're happy to could you get in touch via my email in bio? Thanks
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.
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.
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.
