[HN Gopher] The cochlear implant question
___________________________________________________________________
The cochlear implant question
Author : Tomte
Score : 59 points
Date : 2024-11-15 11:26 UTC (11 hours ago)
(HTM) web link (aeon.co)
(TXT) w3m dump (aeon.co)
| FollowingTheDao wrote:
| 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.
| Etheryte wrote:
| An alternative framing would be that she gets to experience
| both to at least some extent, and isn't that better?
| rincebrain wrote:
| 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.
| FollowingTheDao wrote:
| "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.
| Etheryte wrote:
| 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.
| bluGill wrote:
| 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
| ...
| keiferski wrote:
| Do you think bilingual kids have the same issue? I don't.
| robin_reala wrote:
| The article talks about the capital-D Deaf community. It's
| not just a different language, it's a different culture.
| keiferski wrote:
| And people that speak say, Chinese and American English,
| don't have two different cultures?
| FollowingTheDao wrote:
| Knowing ASL does not make me Deaf. And knowing Mandarin
| does not make me Chinese.
| keiferski wrote:
| 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.
| bluGill wrote:
| 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.
| sarchertech wrote:
| Language facilitate access to culture. You think that Deaf
| culture is the only culture you can't fully participate in
| without speaking the language?
| watwut wrote:
| It is more that there is strong vocal subgroup of the
| Deaf culture that sees participation in larger speaking
| community as betrayal.
| gyomu wrote:
| 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.
| keiferski wrote:
| 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.
| FollowingTheDao wrote:
| 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
| sarchertech wrote:
| 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.
| saalweachter wrote:
| 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.
| Almondsetat wrote:
| The hearing... community?
| ttpphd wrote:
| Have you met the undergrads at Gallaudet University? They live
| in both worlds.
| paulryanrogers wrote:
| > 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.
| robin_reala wrote:
| 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.
| paulryanrogers wrote:
| Right, I didn't mean to deny the advantages of signing.
| Rather point out some arguments are crossing over into
| absurdity.
| cbsks wrote:
| I went on a scuba dive trip with a couple of deaf people and
| I was definitely jealous.
| mitthrowaway2 wrote:
| You don't have to be deaf to learn sign language!
| throw894389 wrote:
| 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.
| techsupporter wrote:
| > 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.
| astura wrote:
| >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.
| mapt wrote:
| "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.
| throw894389 wrote:
| > "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....
| EdgeExplorer wrote:
| 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
| tokai wrote:
| 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.
| sethjgore wrote:
| 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.
| RandallBrown wrote:
| > 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.
| bluGill wrote:
| 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.
| throw894389 wrote:
| 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.
| zie wrote:
| 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.
| sethjgore wrote:
| 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
| mezzie2 wrote:
| 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.
| bluGill wrote:
| 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.
| mezzie2 wrote:
| 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.
| Fire-Dragon-DoL wrote:
| That is so painful to hear. Having those two disabilities
| at the same time cut you out of so much of the world
| zie wrote:
| See tactile signing:
| https://en.wikipedia.org/wiki/Tactile_signing
| vr46 wrote:
| 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.
| ben7799 wrote:
| 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.
| cen4 wrote:
| 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.
| poulpy123 wrote:
| as a foreigner, the language used is baffling (for example:
| "rarely addressed in moderate, bipartisan terms" that comes out
| of nowhere)
| resoluteteeth wrote:
| Bipartisan probably isn't quite the right word there
| swalker326 wrote:
| 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.
| techsupporter wrote:
| 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.
| sheepscreek wrote:
| 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.
| dghughes wrote:
| 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...
| bkfunk wrote:
| 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)
| pugworthy wrote:
| 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.
| cardiffspaceman wrote:
| 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.
| ibejoeb wrote:
| That study seems to have found that there is an association
| between dementia and concurrent vision and hearing impairment
| in elderly adults.
| barbazoo wrote:
| Also social isolation, much much earlier in life.
| pmarreck wrote:
| 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/
| plondon514 wrote:
| 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.
| jborichevskiy wrote:
| This seems like a really thoughtful compromise, a meeting-in-
| the-middle that keeps optionality as open as possible for the
| child.
| plondon514 wrote:
| edit: castellano not catalan
| James_K wrote:
| 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.
| exceptione wrote:
| 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.
| James_K wrote:
| No, I'm not talking about that.
| Workaccount2 wrote:
| 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".
| TeMPOraL wrote:
| 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"".
| cameronh90 wrote:
| 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.
| James_K wrote:
| 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.
| marci wrote:
| 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.
| mannykannot wrote:
| A non-trivial part of our artificial world is designed on
| the tacit assumption that listening to spoken language is
| what we do.
| evilduck wrote:
| 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.
| mannykannot wrote:
| 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.
| evilduck wrote:
| 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.
| barbazoo wrote:
| 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.
| sleepybrett wrote:
| 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.
| ben_w wrote:
| 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.
| AuryGlenz wrote:
| 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.
| TylerE wrote:
| 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.
| lsy wrote:
| > 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.
| idopmstuff wrote:
| > 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.
| James_K wrote:
| > 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.
| giraffe_lady wrote:
| 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.
| UltraSane wrote:
| 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.
| markovs_gun wrote:
| 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.
| crystal_revenge wrote:
| > 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).
| jl6 wrote:
| 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.
| jonathanlb wrote:
| > 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.
| throwawayk7h wrote:
| 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.)
| giraffe_lady wrote:
| We need to decommission the culture of this website that
| makes straightforward eugenics a popular position here.
| h0l0cube wrote:
| 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
| h0l0cube wrote:
| 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
| throwawayk7h wrote:
| 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.)
| cassepipe wrote:
| 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
| zie wrote:
| "Blindness separates people from things; deafness separates
| people from people." -- Helen Keller
| ibejoeb wrote:
| Anyone here with SSHL have experience with CI? I've heard mixed
| things due to the rather different sound experience vs natural
| hearing.
| observationist wrote:
| 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.
| ibejoeb wrote:
| 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.
| cromulent wrote:
| 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.
| arjie wrote:
| 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.
| sssilver wrote:
| How much money do things like this end up costing?
| UltraSane wrote:
| Must be nice to be rich.
| nuancebydefault wrote:
| The bringing up part of having children is much more
| expensive than that.
| zonkerdonker wrote:
| 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.
| janeerie wrote:
| 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).
| seanw444 wrote:
| > 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.
| Animats wrote:
| "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
| lemursage wrote:
| 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.
| snakeyjake wrote:
| 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?
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