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.
> 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).
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.
> Does preservation of a living culture take priority over the wellbeing of its members? Perhaps a culture is something that can be decommissioned humanely.
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.
When can the child be considered part of that culture though? They may be deaf, but when do they become capital-D Deaf as defined in the article? Is it while in the womb, when they're born, when they gain the capacity for signing and potentially speech, or when they are first introduced to members of the Deaf community?
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.)
Singapore did exactly this under Lee Kuan Yew, and transformed itself from essentially a wasteland into one of the top countries in the world both in economic and quality-of-life terms. In the opinion of many (though of course not all) who went through that difficult transition, yes, it was more than worth it.
Utility monsters are definitely overrepresented here. But it’s just a consequence of intellectual discussion that all ideas are entertained, no matter how perverse. But that shouldn’t be absent any reflection of how these ideas would affect real peoples’ lives. Especially in tech circles where there can be a large potential to affect many lives
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?
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
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
The point at issue is: What subset of things (what individuals, groups, ideas, cultures) "deserve" to continue?
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?
‘The people’. Whatever scale that is. Democracy as imperfect and inefficient it is, is our best vehicle for the collective consciousness (of humanity) to decide at the scale of a polity. A family can decide amongst themselves what’s best for their infant, and as they grow, the person can decide for themselves as an individual. Moralizing on the behalf of others, is at best performative, at worst harmful and denigrating. It of course gets messy when we’re talking about irreversible decisions made by parents, but I don’t believe that’s relevant for cochlear implants. Certainly not relevant for continuing a culture either
If I understand correctly, what you're saying is that the tradeoff is whether or not for the child to have the disability but along with it the opportunity to gain a close-knit and supportive community with a shared language.
(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.)
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 tutoring in ASL for the fam, but like, we don;t have the time to even cook dinner, haha.
I echo this same comment. Myself and my whole family are all hearing, so I can't/don't feel qualified to weigh in on the details of the article. That being said, we've just started learning ASL together this year and it's been wonderful. I have nothing but respect for the entire Deaf community: we've been to a few Deaf church events and it's been amazing to meet and get to know everyone. While our reasons for learning ASL are personal, it's really opened our eyes to both the challenges and the incredible feats of the Deaf community.
For avoidance of doubt, I'll flip the polarity of your adoption hypothetical: In my opinion, a Chinese family adopting an ethnically European child have no obligation to teach that child "Western values" or "Western culture". Their only obligation is to raise that child with love and care.
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.
Careful, you are most likely talking about someone spending their energy at masking their handicaps. *You only see the handicap you can see*.
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".
It starts becoming a problem if this evolves further into "ignore or fight an actual fix when it's available", and then into "if it ain't broken, break it, so it's "fixed"".
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.
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.
I was born with some hearing challenges, nothing too bad.. enough for the hearing test in elementary school to flag it and to suggest I don't sit in the back of the class, but thats about it. As i've aged I've noticed more issues. Hearing in louder spaces can be challenging, etc. What I would consider fairly normal age-based hearing loss, coupled with a bit of a hearing issue from birth and probably bolstered by a youth spent going to a lot of concerts and clubs.
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.
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.
Saying the world is designed for people with hearing is causally inaccurate. Hearing evolved because sound is a useful way to perceive the world, the same way vision evolved in the spectrum it did because those are the strongest frequencies of sunlight. And more generally, I don't see many things in my everyday life with exclusively audio feedback. Usually anything designed with an audio cue just uses it to reinforce a visual one. Things we are interested in (animals, cars, etc) make noise, and we have evolved hearing in response to that. Without hearing, you have no way to be notified about things outside your field of view. This is not something we've designed about the world, it's just how that sense works.
The world was dark half the day for much of human history. Communicating in the dark is clearly easier with noise than signing or passing tactile writing around. It's not like we just invented noise for the fun of it, it's just a better medium in most situations.
Well, most of human activity, then and now, is conducted in a lighted environment. Regardless, it is not clear to me how the reasons for vocal/aural communication arising as the dominant mode is at all relevant here.
They probably meant "the human world", cities, etc. For example in the subway, the warning for the closing of doors used to be only audio, now you can see more modern ones that have both audio and visual cues that doors are about to close. In the same way, when crossing at a traffic light, there used to be only visual cues. In some cities now you have places that also have audio cues for people that need it.
We don't have food that's only detectable with x-ray vision and we're not food for predators that are hiding in the x-ray spectrum who pop out and attack you with that advantage, so not being able to see in x-ray is not a comparable disability.
> 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.
> 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
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.
> we shy away from encouraging conversion therapy or height extension surgery by default
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.
Are people who wear glasses disabled? They have an impairment that can prevent them from full participation in work, family, social life. But they also have an accessible accommodation that mitigates most of the practical consequences of their impairment.
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.
> 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.
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.
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.
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.
> 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.
Honestly I'm looking to a future where no one has to worry anymore about hereditary conditions. If we can eradicate viruses we should also be able to manage this.
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.
Stop wondering, you are wasting energy you could be spending on them instead - they were born out of a beautiful, real event that happened exclusively between 2 people. Enjoy all of that.
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.
In the US, a full round of IVF plus transfer will be around 20k on the low end, up to maybe 40k on the high end, including all medication required if paid for fully out of pocket. Genome sequencing costs a few k per embryo.
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.
> 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.
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?
> 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?
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."
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.
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)
I 100% agree with the line you quote and refute in your reply, which I've repeated below...
> 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.
The local community college used to show lectures for certain classes on the cable TV. They had lectures on “Deaf Culture”. The lecturer would use the word “hearies” and generally made a good case for the existence of deaf culture. I am a “heary” and I found these lectures eye-opening.
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.
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 have "met" people who are both blind and deaf. They use sign language by putting their hand on the hand of the signer and follow that way. (I only know a couple signs so it wasn't worth trying to talk to them except via interpreter and so saying I've met them is a bit strong)
This also is proof that sign language works in the dark.
ASL (and sign language generally) and tactile sign are two different languages, and language types that are at least as different as verbal languages and seen/sign languages - an American deafblind person who uses tactile sign and meets someone who uses ASL isn't necessarily going to be able to communicate with them. The signs and underlying language structure (morphology/syntax/etc.) are all different. I wouldn't consider the existence of tactile sign to mean that sign language works in the dark because they're two different language types, but the terminology is confusing and I have a linguistics background so I don't know if the author was including tactile sign or not. I'd guess not since it's about teaching his daughter who is d/Deaf, not deafblind, and tactile sign isn't in much use outside of the deafblind community. d/Deaf and blind people don't use it much, I believe.
They can definitely be distinct languages as is the case with protactile. For the deaf-blind people I've met, ASL is their first language and protactile is more of a second. Maybe it's different in other areas of the world.
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.
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.
> 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.
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.
Pedantic and wrong. What was your point here? Sign languages per your own link are expressed through manual articulation in combination with non-manual markers. That's gestures in common speech in all cases unless you are operating with the most specific and unhelpful definition of gestures.
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.
Been looking to connect with other signing engineers deaf or not! Seems you are one and you know others as well! Would love to connect. Dm me at contact at signsnap.me
When you need to communicate something technical you finger spell what you mean once, and the you make up a sign on the spot for that one thing and use that sign there after. The next conversation you can make up a different sign for the same thing, or reuse the old sign. If a sign is used often enough it enters the common language.
By doing such you can communicate anything technical.
What if the other person does not know the sign you made? In my experience there are multiple dialect in sign language, because every school just manufactures their own gestures.
You missed the initial part, where the signer finger spells the concept the first time they use it, and then they come up with a sign representing it. By doing so, they've shown the other person what sign they're using and its meaning.
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.
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.
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.
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.
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.
"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.
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.
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.
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?
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.
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.
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)
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/
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.
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.
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.
If you spend time around bicultural people or 3rd culture kids you’ll find this is definitely an issue.
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.
I think you’re confusing two things: third culture kids who grow up in multiple places while not feeling at home in any of them; and bilingual kids that grow up in a smaller number of places/one place but still speak multiple languages because of their ancestry, etc.
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 texted this comment to my deaf friend (a graduate of Gallaudet University) and she said; "Not bilingual kids, but certainly immigrants from non-english speaking countries! Just go to any big city and you will see a thriving Mexican, Chinese, or Indian community!" And she suggested you read just one book on the Deaf Community before being so certain. Deaf in America or Inside Deaf Culture would be a good start.
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.
Language does not make the culture. There are many deaf people who are not part of the Deaf culture. There are many people who have heard all their life but are also part of the Deaf culture.
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.
Obviously my example was for someone that grew up speaking Chinese and American English natively, as in a person of Chinese descent that grew up in America. There are millions of such people.
I think a lot of people who have their feet in multiple commonly "either/or" cultures have written quite a lot about the struggle to establish their own identity given those cultures framing many things in terms of, for lack of a better word, sole/primary membership.
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.
I mean, why would they? It would only create negative emotions, but it wouldn't have any positive impact on anything. Feeling bad about a condition can be useful if it can propel you to improve the situation, e.g. if you're an alcoholic and you feel bad about it, you might stop drinking. But for conditions where it's out of your control and there is no cure, framing it as bad does not do any good. No one needs to wallow in self pity thinking oh if only I was born different, especially if they can lead rich and fulfilling lives.
More importantly, by framing it as a thing (not good or bad just is) they can find ways around the issues. They can live their life just fine. Sure there are some things you cannot do without hearing, but there are more things to do in life than there is time anyway so there isn't a problem. You can't enjoy a symphony concert, but there are a lot of people who could do that yet don't. You can still enjoy a baseball game with those people, or if you don't like baseball - many others don't was well, just ...
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.
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.
Hi, I have an 8 week old deaf daughter in the UK and id love to talk to you about your experience getting the cochlear implant, particularly how you were able to get it so early
If you're happy to could you get in touch via my email in bio? Thanks
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.
> 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).
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.
> Does preservation of a living culture take priority over the wellbeing of its members? Perhaps a culture is something that can be decommissioned humanely.
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.
When can the child be considered part of that culture though? They may be deaf, but when do they become capital-D Deaf as defined in the article? Is it while in the womb, when they're born, when they gain the capacity for signing and potentially speech, or when they are first introduced to members of the Deaf community?
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.)
English is the dominant language at the moment. Should Quebec abandon French? Should Europe? The rest of the world?
Singapore did exactly this under Lee Kuan Yew, and transformed itself from essentially a wasteland into one of the top countries in the world both in economic and quality-of-life terms. In the opinion of many (though of course not all) who went through that difficult transition, yes, it was more than worth it.
We need to decommission the culture of this website that makes straightforward eugenics a popular position here.
Utility monsters are definitely overrepresented here. But it’s just a consequence of intellectual discussion that all ideas are entertained, no matter how perverse. But that shouldn’t be absent any reflection of how these ideas would affect real peoples’ lives. Especially in tech circles where there can be a large potential to affect many lives
Where is your threshold for "culture"?
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?
Realbeing > wellbeing
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
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
The point at issue is: What subset of things (what individuals, groups, ideas, cultures) "deserve" to continue?
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?
‘The people’. Whatever scale that is. Democracy as imperfect and inefficient it is, is our best vehicle for the collective consciousness (of humanity) to decide at the scale of a polity. A family can decide amongst themselves what’s best for their infant, and as they grow, the person can decide for themselves as an individual. Moralizing on the behalf of others, is at best performative, at worst harmful and denigrating. It of course gets messy when we’re talking about irreversible decisions made by parents, but I don’t believe that’s relevant for cochlear implants. Certainly not relevant for continuing a culture either
If I understand correctly, what you're saying is that the tradeoff is whether or not for the child to have the disability but along with it the opportunity to gain a close-knit and supportive community with a shared language.
(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.)
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 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.
I echo this same comment. Myself and my whole family are all hearing, so I can't/don't feel qualified to weigh in on the details of the article. That being said, we've just started learning ASL together this year and it's been wonderful. I have nothing but respect for the entire Deaf community: we've been to a few Deaf church events and it's been amazing to meet and get to know everyone. While our reasons for learning ASL are personal, it's really opened our eyes to both the challenges and the incredible feats of the Deaf community.
"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?'.
For avoidance of doubt, I'll flip the polarity of your adoption hypothetical: In my opinion, a Chinese family adopting an ethnically European child have no obligation to teach that child "Western values" or "Western culture". Their only obligation is to raise that child with love and care.
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.
No, I'm not talking about that.
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".
It starts becoming a problem if this evolves further into "ignore or fight an actual fix when it's available", and then into "if it ain't broken, break it, so it's "fixed"".
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.
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.
I was born with some hearing challenges, nothing too bad.. enough for the hearing test in elementary school to flag it and to suggest I don't sit in the back of the class, but thats about it. As i've aged I've noticed more issues. Hearing in louder spaces can be challenging, etc. What I would consider fairly normal age-based hearing loss, coupled with a bit of a hearing issue from birth and probably bolstered by a youth spent going to a lot of concerts and clubs.
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.
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.
Saying the world is designed for people with hearing is causally inaccurate. Hearing evolved because sound is a useful way to perceive the world, the same way vision evolved in the spectrum it did because those are the strongest frequencies of sunlight. And more generally, I don't see many things in my everyday life with exclusively audio feedback. Usually anything designed with an audio cue just uses it to reinforce a visual one. Things we are interested in (animals, cars, etc) make noise, and we have evolved hearing in response to that. Without hearing, you have no way to be notified about things outside your field of view. This is not something we've designed about the world, it's just how that sense works.
A non-trivial part of our artificial world is designed on the tacit assumption that listening to spoken language is what we do.
The world was dark half the day for much of human history. Communicating in the dark is clearly easier with noise than signing or passing tactile writing around. It's not like we just invented noise for the fun of it, it's just a better medium in most situations.
Well, most of human activity, then and now, is conducted in a lighted environment. Regardless, it is not clear to me how the reasons for vocal/aural communication arising as the dominant mode is at all relevant here.
They probably meant "the human world", cities, etc. For example in the subway, the warning for the closing of doors used to be only audio, now you can see more modern ones that have both audio and visual cues that doors are about to close. In the same way, when crossing at a traffic light, there used to be only visual cues. In some cities now you have places that also have audio cues for people that need it.
We don't have food that's only detectable with x-ray vision and we're not food for predators that are hiding in the x-ray spectrum who pop out and attack you with that advantage, so not being able to see in x-ray is not a comparable disability.
> 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.
> 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
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.
> we shy away from encouraging conversion therapy or height extension surgery by default
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.
Are people who wear glasses disabled? They have an impairment that can prevent them from full participation in work, family, social life. But they also have an accessible accommodation that mitigates most of the practical consequences of their impairment.
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.
> 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.
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.
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.
Hearing people by definition can do something that deaf people cannot: HEAR SOUND.
Being able to hear is basically a superpower if you are deaf.
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
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.
> 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.
How does that square with the obligation that parents have to their children to make their lives suck less?
Honestly I'm looking to a future where no one has to worry anymore about hereditary conditions. If we can eradicate viruses we should also be able to manage this.
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.
Stop wondering, you are wasting energy you could be spending on them instead - they were born out of a beautiful, real event that happened exclusively between 2 people. Enjoy all of that.
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.
In the US, a full round of IVF plus transfer will be around 20k on the low end, up to maybe 40k on the high end, including all medication required if paid for fully out of pocket. Genome sequencing costs a few k per embryo.
Must be nice to be rich.
The bringing up part of having children is much more expensive than that.
This certainly is a viewpoint
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.
> 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.
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?
> 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?
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."
While I agree with you, the culture is coming from the sign language. Liver disease doesn't come with a shared language.
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.
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
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...
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)
I 100% agree with the line you quote and refute in your reply, which I've repeated below...
> 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.
The local community college used to show lectures for certain classes on the cable TV. They had lectures on “Deaf Culture”. The lecturer would use the word “hearies” and generally made a good case for the existence of deaf culture. I am a “heary” and I found these lectures eye-opening.
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.
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.
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
> 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.
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 have "met" people who are both blind and deaf. They use sign language by putting their hand on the hand of the signer and follow that way. (I only know a couple signs so it wasn't worth trying to talk to them except via interpreter and so saying I've met them is a bit strong)
This also is proof that sign language works in the dark.
ASL (and sign language generally) and tactile sign are two different languages, and language types that are at least as different as verbal languages and seen/sign languages - an American deafblind person who uses tactile sign and meets someone who uses ASL isn't necessarily going to be able to communicate with them. The signs and underlying language structure (morphology/syntax/etc.) are all different. I wouldn't consider the existence of tactile sign to mean that sign language works in the dark because they're two different language types, but the terminology is confusing and I have a linguistics background so I don't know if the author was including tactile sign or not. I'd guess not since it's about teaching his daughter who is d/Deaf, not deafblind, and tactile sign isn't in much use outside of the deafblind community. d/Deaf and blind people don't use it much, I believe.
They can definitely be distinct languages as is the case with protactile. For the deaf-blind people I've met, ASL is their first language and protactile is more of a second. Maybe it's different in other areas of the world.
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.
That is so painful to hear. Having those two disabilities at the same time cut you out of so much of the world
The people who come into your world spend their energy to get there.
See tactile signing: https://en.wikipedia.org/wiki/Tactile_signing
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.
Right, I didn't mean to deny the advantages of signing. Rather point out some arguments are crossing over into absurdity.
I went on a scuba dive trip with a couple of deaf people and I was definitely jealous.
You don't have to be deaf to learn sign language!
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.
> 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.
"Not possible" is a vast overstatement.
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.
> "Not possible" is a vast overstatement.
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....
>And communicating specialized stuff like technical programming is not possible, gestures only cover basic words.
This part just absolutely and categorically untrue.
I've personally witnessed people whiteboard code using only ASL on multiple different occasions.
Sign language is not gestures.
This is covered in (among many other places) the introduction to the Wikipedia article on sign language: https://en.wikipedia.org/wiki/Sign_language
> a movement of part of the body, especially a hand or the head, to express an idea or meaning
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.
Pedantic and wrong. What was your point here? Sign languages per your own link are expressed through manual articulation in combination with non-manual markers. That's gestures in common speech in all cases unless you are operating with the most specific and unhelpful definition of gestures.
I use sign language myself everyday.
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.
When I sign with other deaf programmers, we don't have trouble communicating with signs, even about technical programming.
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.
Been looking to connect with other signing engineers deaf or not! Seems you are one and you know others as well! Would love to connect. Dm me at contact at signsnap.me
When you need to communicate something technical you finger spell what you mean once, and the you make up a sign on the spot for that one thing and use that sign there after. The next conversation you can make up a different sign for the same thing, or reuse the old sign. If a sign is used often enough it enters the common language.
By doing such you can communicate anything technical.
What if the other person does not know the sign you made? In my experience there are multiple dialect in sign language, because every school just manufactures their own gestures.
You missed the initial part, where the signer finger spells the concept the first time they use it, and then they come up with a sign representing it. By doing so, they've shown the other person what sign they're using and its meaning.
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.
"Entire office is not going to learn new language, just to speak with an odd deaf person."
Same as...
Entire England is not going to learn new language, just to speak with an odd French person.
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.
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.
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.
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.
"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
Anyone here with SSHL have experience with CI? I've heard mixed things due to the rather different sound experience vs natural hearing.
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.
Really informative stuff, thanks!
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.
as a foreigner, the language used is baffling (for example: "rarely addressed in moderate, bipartisan terms" that comes out of nowhere)
Bipartisan probably isn't quite the right word there
Leftism and its consequences have been a disaster for the human race.
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?
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.
“Blindness separates people from things; deafness separates people from people.” ― Helen Keller
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.
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/
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.
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.
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.
If you spend time around bicultural people or 3rd culture kids you’ll find this is definitely an issue.
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.
I think you’re confusing two things: third culture kids who grow up in multiple places while not feeling at home in any of them; and bilingual kids that grow up in a smaller number of places/one place but still speak multiple languages because of their ancestry, etc.
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 texted this comment to my deaf friend (a graduate of Gallaudet University) and she said; "Not bilingual kids, but certainly immigrants from non-english speaking countries! Just go to any big city and you will see a thriving Mexican, Chinese, or Indian community!" And she suggested you read just one book on the Deaf Community before being so certain. Deaf in America or Inside Deaf Culture would be a good start.
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
The article talks about the capital-D Deaf community. It’s not just a different language, it’s a different culture.
And people that speak say, Chinese and American English, don’t have two different cultures?
Language does not make the culture. There are many deaf people who are not part of the Deaf culture. There are many people who have heard all their life but are also part of the Deaf culture.
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.
Knowing ASL does not make me Deaf. And knowing Mandarin does not make me Chinese.
Obviously my example was for someone that grew up speaking Chinese and American English natively, as in a person of Chinese descent that grew up in America. There are millions of such people.
I think you're missing the point entirely.
Language facilitate access to culture. You think that Deaf culture is the only culture you can’t fully participate in without speaking the language?
It is more that there is strong vocal subgroup of the Deaf culture that sees participation in larger speaking community as betrayal.
The hearing... community?
An alternative framing would be that she gets to experience both to at least some extent, and isn't that better?
I think a lot of people who have their feet in multiple commonly "either/or" cultures have written quite a lot about the struggle to establish their own identity given those cultures framing many things in terms of, for lack of a better word, sole/primary membership.
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.
"Just to be clear, I'm not trying to say I think any of what I just described is "good""
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 mean, why would they? It would only create negative emotions, but it wouldn't have any positive impact on anything. Feeling bad about a condition can be useful if it can propel you to improve the situation, e.g. if you're an alcoholic and you feel bad about it, you might stop drinking. But for conditions where it's out of your control and there is no cure, framing it as bad does not do any good. No one needs to wallow in self pity thinking oh if only I was born different, especially if they can lead rich and fulfilling lives.
More importantly, by framing it as a thing (not good or bad just is) they can find ways around the issues. They can live their life just fine. Sure there are some things you cannot do without hearing, but there are more things to do in life than there is time anyway so there isn't a problem. You can't enjoy a symphony concert, but there are a lot of people who could do that yet don't. You can still enjoy a baseball game with those people, or if you don't like baseball - many others don't was well, just ...
Have you met the undergrads at Gallaudet University? They live in both worlds.
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.
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.
Hi, I have an 8 week old deaf daughter in the UK and id love to talk to you about your experience getting the cochlear implant, particularly how you were able to get it so early
If you're happy to could you get in touch via my email in bio? Thanks
Sure. Thanks for having contacted me.