71–80 of 98 posts
It's good that the article title doesn't use "congenital deafness", but it would be even better if it were simply "Deafness Cured!" /s
Please rename this to "Gene therapy restored hearing in patients with autosomal recessive deafness" so as not to raise and then dash hopes of deaf HN readers
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There are few things that make me angrier than trying to hold back cures for deafness because of "cultural erasure" or whatever the phrasing is. It is utterly reprehensible. To try to keep someone disabled (yes - disabled, not "differently abled", they are objectively lacking a capability that a healthy human has) just so that there are more people in your community is objectively evil in my book. It is directly doin…
I said "not disabling", not that deafness is not a disability. Those two things mean different things to me. Obviously deaf people cannot hear. Not able. Dis-able. Deafness is a disability. But not all disabilities are generally disabling of individuals. The only disability that deafness causes is a lack of perception of sound. Hearing people have a panoply of inferences about what that means -- about how it disables…
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There are few things that make me angrier than trying to hold back cures for deafness because of "cultural erasure" or whatever the phrasing is. It is utterly reprehensible. To try to keep someone disabled (yes - disabled, not "differently abled", they are objectively lacking a capability that a healthy human has) just so that there are more people in your community is objectively evil in my book. It is directly doin…
Do people and society with intentional lack of computers make you angry as well because those people see benefits for their culture not to have one? I think you believe being disabled is a really bad situation but they believe it is a heightening of other senses, and that is something you cannot relate to.
I'm always amazed that some people still choose to publish in paywalled journals.
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Controversial in the same way cochlear implants are. Many deaf/Deaf parents want children who hear. And I think absent the cultural consideration, almost all would want children who hear. But you can't ignore the cultural consideration. If you are deaf, and have a deaf child, curing that child's deafness means they will move away from you later in life. It's a kind of alienation even when the child remains bicultural…
This is a super interesting comment, thank you. I am certainly guilty of believing the deaf experience is inferior to the hearing experience - but not because I think ASL is lesser than spoken languages or deficient as a communication channel. It's because deaf people don't hear music. I know people can dance to the beat and often distinguish songs by vibration patterns, but that is surely not equivalent to the emoti…
I don't know ASL, so can you elaborate on this? Aren't facial expressions just as important for non-deaf people?
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There are few things that make me angrier than trying to hold back cures for deafness because of "cultural erasure" or whatever the phrasing is. It is utterly reprehensible. To try to keep someone disabled (yes - disabled, not "differently abled", they are objectively lacking a capability that a healthy human has) just so that there are more people in your community is objectively evil in my book. It is directly doin…
Sorry, but they are differently abled. Their brains and perceptions are different from people who can hear. You are assuming that those differences are all negatives. They do not believe that to be the case. Many people here self-diagnose as Asperger's. Can you not see why they would not want a "cure"? Being an extrovert objectively gives you great advantages in (most) societies. As an introverted parent, I would def…
I have congenital hearing loss in both ears, and wear hearing aids. I don't know ASL (at least not well enough to use), as I am more or less able to function with hearing aids, with the usual caveats - background noise, group settings, still quite reliant on lip-reading and context to fill in gaps etc.
Within my financial means, I would glad pay to wave a magic wand and restore my ears to "normal". This gene therapy sounds interesting, but I'm not sure if that mutation is the cause of my hearing loss. And I'm always wary of side-effects, haha.
I do see my hearing loss as a disability - and no matter how much you try to dress it up, or with "don't diss my dis-ability" PR campaigns - it still does suck every day. I'm not saying you should discriminate against people for their disability - and I've steadfastly advocated for increased accessibility to level the playing field (e.g. in my workplace, at church, in the community). But I'm not exactly Matt Murdoch or Echo here.
And yes, I'm also "neuro-diverse" (starts with A) - and yes, I guess you could argue there's advantages there, under specific circumstances. But there's most definitely a penalty there.
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> But again -- people who live in the deaf cultural world -- they do not feel that, and they don't feel disabled because, in their context, they aren't I can respect resisting pressure to be part of the hearing world, but there are certainly ways in which deafness impacts one's safety and opportunities. Not being able to hear sirens, or oncoming trucks, or cars honking their horns, or cyclists saying "on your left",…
> I can respect resisting pressure to be part of the hearing world, but there are certainly ways in which deafness impacts one's safety and opportunities. I agree, but that's not a result of me being deaf, it's a result of the hearing world just blindly assuming everyone can hear these things. People screw up hearing sirens or "on your left" or whatever ALL the time, even if they are hearing (distracted, headphones,…
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Sorry, but they are differently abled. Their brains and perceptions are different from people who can hear. You are assuming that those differences are all negatives. They do not believe that to be the case. Many people here self-diagnose as Asperger's. Can you not see why they would not want a "cure"? Being an extrovert objectively gives you great advantages in (most) societies. As an introverted parent, I would def…
See - I don't get this. I've heard people mention it about the deaf community, but it just doesn't make sense to me - perhaps I'm missing something. I have congenital hearing loss in both ears, and wear hearing aids. I don't know ASL (at least not well enough to use), as I am more or less able to function with hearing aids, with the usual caveats - background noise, group settings, still quite reliant on lip-reading…
It's not a clear cut easy decision. I would say one should understand and respect the parents' decision. They know the factors way better than I do, and likely in many ways better than you do (especially as you don't know ASL).
I work with a deaf person (not born that way, but been that way most of her life). I'm sure she'd pay a hefty sum to get normal hearing - partially because her whole family (kids, etc) are not deaf. Even when she openly talks about the advantages of being deaf. If she did have a deaf child and chose treatment for her kid, I'd totally understand. But if she chose against it, I'd also totally understand.
What I don't get is people insisting they are totally wrong/evil for not pursuing the treatment for their kids. Almost always they don't understand the factors at play.
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Do people and society with intentional lack of computers make you angry as well because those people see benefits for their culture not to have one? I think you believe being disabled is a really bad situation but they believe it is a heightening of other senses, and that is something you cannot relate to.
No, because not having a computer isn't a distinct lack from one's natural capabilities in the way that deafness is. Moreover, my issue here isn't with people who don't want to cure their own deafness, it's with people who don't even want such cures to be available for others. So in the computer analogy this would be more like someone who tries to protest the existence of computers at all, rather than simply choosing…
The original commenter wanted to state that deafness can and should be seen as a natural occurrence, instead of a disability, that pushes people to better use other faculties. In the computer analogy, it would be someone who protests the use of computers entirely like for school children, to push them to use other skills.
I have a specific “disability” that I often cannot smell (because of allergies). I have learned to “feel” smell with my fingers running through the air. In such a situation, am I really disabled? Despite how important smell can be especially with spoiled foods? Few would think so. This deaf commenter sees his deafness in the same manner. And sees efforts to broaden people’s senses in the same manner as children being given calculators and computers at an early age.