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I feel like the narrative around disabled people has advanced to the point where some now insist that they aren't disabled. In reality, it's a pretty objective

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 2y ago
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 2y ago
  No, I'm not talking about that.
Workaccount2 2y ago
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 2y ago
  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"".
- d0mine 2y ago
  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.
cameronh90 2y ago
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 2y ago
  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 2y ago
    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 2y ago
    A non-trivial part of our artificial world is designed on the tacit assumption that listening to spoken language is what we do.
    - evilduck 2y ago
barbazoo 2y ago
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 2y ago
  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 2y ago
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.
Auracle 2y ago
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 2y ago
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 2y ago
> 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 2y ago
  > 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.
markovs_gun 2y ago
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 2y ago
> 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 2y ago
  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 2y ago
    > 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.
cassepipe 2y ago
I would like to recommend this book on the issue : https://en.wikipedia.org/wiki/Stigma:_Notes_on_the_Management_of_Spoiled_Identity 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
anondude24 2y ago
> 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.

exceptione 2y ago

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 2y ago
No, I'm not talking about that.

Workaccount2 2y ago

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 2y ago
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"".
d0mine 2y ago
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.

cameronh90 2y ago

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 2y ago
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 2y ago
  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 2y ago
  A non-trivial part of our artificial world is designed on the tacit assumption that listening to spoken language is what we do.
  - evilduck 2y ago

barbazoo 2y ago

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 2y ago
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 2y ago

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.

Auracle 2y ago

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 2y ago

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 2y ago

> 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 2y ago
> 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.

markovs_gun 2y ago

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 2y ago

> 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 2y ago
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 2y ago
  > 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.

cassepipe 2y ago

I would like to recommend this book on the issue : https://en.wikipedia.org/wiki/Stigma:_Notes_on_the_Management_of_Spoiled_Identity 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

anondude24 2y ago

> 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.