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"These kind of genetic therapies seem to reinforce this idea of deafness being a problem in need of eradication, and that the only solution for disabled people

"These kind of genetic therapies seem to reinforce this idea of deafness being a problem in need of eradication, and that the only solution for disabled people to fully assimilate into society is through a medical intervention," says Jaipreet Virdi This just seems so incredibly stupid to me.

ceejayoz 6mo ago
To some in the Deaf community, being Deaf is like skin color or hair color or height or left handedness; a normal variation of humanity with its own culture. "Fixing" reads as genocide to them, and it's not entirely unwarranted.
- neonstatic 6mo ago
  [dead]
- altruios 6mo ago
  Okay. for that to be a reasonable take: curing deafness must then destroy culture. would that ACTUALLY happen, though? I challenge that assumption. Take this hypothetical scenario: magic... magically all deafness is gone, suddenly and instantly. Would this destroy friendships? Would this erode personal relationships? Would this destroy (the very useful invention of) sign language? Would this destroy books or media? Would this devastate financially members of this community? would this kill anyone? Well, besides the secondary effects of suddenly hearing, potentially leading to accidents. Do you actually think any of the above would happen? I don't actually see anything like that happening. This is conservatism dressed up wearing a minority's hat. This is staunch resistance to change because of fear of lacking the familiar experience using a gross comparison to prevent reasonable analysis. But I also believe in personal choice. Mandating conversion is not a power I want to give the government in any capacity. I just do not see the 'genocide' argument. This is an example (like Christianity) about how horrible ideas attach themselves to identity to prevent their excision from their host. If you don't think Christianity is a good idea: suddenly it's a personal affront to them. If you don't think being deaf is an advantage or neutral: suddenly it's a personal affront to them. Be wary of anything attaching itself like this to your identity: you usually get infected when you are too young to have defenses.
  - ceejayoz 6mo ago
    > would that ACTUALLY happen, though? I suspect so. https://en.wikipedia.org/wiki/Endangered_language https://en.wikipedia.org/wiki/Endangered_language I'll also provide my favorite "it won't happen to us!" example. https://en.wikipedia.org/wiki/Association_of_German_National_Jews https://en.wikipedia.org/wiki/Association_of_German_National...
    - altruios 6mo ago
      I understand the concern. I want sign language to continue to exist and be used. It's far too useful for communication in a loud/silent area. I think it should be adopted much more widely as a second language. I however do not wish children to be subjected to the will of the parents when that will dictates that the child's variety of sensory experience is intentionally limited by withholding medical intervention. That is cruel. There will never not be deaf people, and we should build society so hearing isn't a requirement.
notahackeratll 6mo ago
Consider this from the perspective of a deaf person. While it seems silly from the perspective of a hearing person, a lot of people in the deaf community are concerned that they are viewed as having a problem needing to be fixed, rather than competent, highly functioning people.
- commandlinefan 6mo ago
  Coming from somebody in the half-deaf community, please, medical science, find a cure for the problem that I have that needs to be fixed.
  - akoboldfrying 6mo ago
    Thank you for saying this so energetically and straightforwardly. To the greatest extent possible, we should endeavour to call things what they are. At the risk of turning this positive thread negative, there exist deaf people who would deny their children the opportunity to hear, and very little makes me more furious than society's willingness to tolerate this form of child abuse.
- estearum 6mo ago
  Then they can just not get the treatment...?
  - harimau777 6mo ago
    Part of the concern is that if a cure for deafness becomes standard, then resources for the deaf community (e.g. sign language interpreters) may no longer be available for people who either cannot or choose not to get the treatment. There's also an issue that, assuming they work similar in this regard to cochlear implants, the treatment has to be performed at a very young age before its possible for someone to consent or choose whether they want to be part of the deaf community.
    - estearum 6mo ago
      I understand these arguments but don't find either of them compelling whatsoever. Here's my test: If my child was deaf and asked me when they were old enough to know that I declined to have them treated based on these arguments, I cannot even imagine them being okay with that.
axus 6mo ago
In 200 years we'll be having the same debate about whether missing the gene for the Human-Machine Interface Organ is a problem in need of eradication.
- lazyasciiart 6mo ago
  I think hearing has been part of default humans for longer than that.
Noaidi 6mo ago
It’s not, and if you don’t understand this, you’ve never been around the deaf community before. My college language agreement was filled through sign language. Learning about the deaf community was fascinating.
kacesensitive 6mo ago
[dead]
mchusma 6mo ago
Yes let’s go make deafness optional for adults and eradicate childhood deafness. Zero moral ambiguity.
thesmtsolver2 6mo ago
There is no winning with some people. If there was no cure, I am going to bet that these same people will be complaining that the pharma industry doesn't value them enough.
lynx97 6mo ago
Likely because you have no experience with needing accessibility nor the disabled community? There are two approaches, the first usually being followed by non-disabled people: 1. You can only be whole ifwe heal you 2. I am fine as long as the world doesn't make me suffer I can see both sides, but I also see that 1 is incredibly condescending. (blind user)

ceejayoz 6mo ago

To some in the Deaf community, being Deaf is like skin color or hair color or height or left handedness; a normal variation of humanity with its own culture. "Fixing" reads as genocide to them, and it's not entirely unwarranted.

neonstatic 6mo ago
[dead]
altruios 6mo ago
Okay. for that to be a reasonable take: curing deafness must then destroy culture. would that ACTUALLY happen, though? I challenge that assumption. Take this hypothetical scenario: magic... magically all deafness is gone, suddenly and instantly. Would this destroy friendships? Would this erode personal relationships? Would this destroy (the very useful invention of) sign language? Would this destroy books or media? Would this devastate financially members of this community? would this kill anyone? Well, besides the secondary effects of suddenly hearing, potentially leading to accidents. Do you actually think any of the above would happen? I don't actually see anything like that happening. This is conservatism dressed up wearing a minority's hat. This is staunch resistance to change because of fear of lacking the familiar experience using a gross comparison to prevent reasonable analysis. But I also believe in personal choice. Mandating conversion is not a power I want to give the government in any capacity. I just do not see the 'genocide' argument. This is an example (like Christianity) about how horrible ideas attach themselves to identity to prevent their excision from their host. If you don't think Christianity is a good idea: suddenly it's a personal affront to them. If you don't think being deaf is an advantage or neutral: suddenly it's a personal affront to them. Be wary of anything attaching itself like this to your identity: you usually get infected when you are too young to have defenses.
- ceejayoz 6mo ago
  > would that ACTUALLY happen, though? I suspect so. https://en.wikipedia.org/wiki/Endangered_language https://en.wikipedia.org/wiki/Endangered_language I'll also provide my favorite "it won't happen to us!" example. https://en.wikipedia.org/wiki/Association_of_German_National_Jews https://en.wikipedia.org/wiki/Association_of_German_National...
  - altruios 6mo ago
    I understand the concern. I want sign language to continue to exist and be used. It's far too useful for communication in a loud/silent area. I think it should be adopted much more widely as a second language. I however do not wish children to be subjected to the will of the parents when that will dictates that the child's variety of sensory experience is intentionally limited by withholding medical intervention. That is cruel. There will never not be deaf people, and we should build society so hearing isn't a requirement.

notahackeratll 6mo ago

Consider this from the perspective of a deaf person. While it seems silly from the perspective of a hearing person, a lot of people in the deaf community are concerned that they are viewed as having a problem needing to be fixed, rather than competent, highly functioning people.

commandlinefan 6mo ago
Coming from somebody in the half-deaf community, please, medical science, find a cure for the problem that I have that needs to be fixed.
- akoboldfrying 6mo ago
  Thank you for saying this so energetically and straightforwardly. To the greatest extent possible, we should endeavour to call things what they are. At the risk of turning this positive thread negative, there exist deaf people who would deny their children the opportunity to hear, and very little makes me more furious than society's willingness to tolerate this form of child abuse.
estearum 6mo ago
Then they can just not get the treatment...?
- harimau777 6mo ago
  Part of the concern is that if a cure for deafness becomes standard, then resources for the deaf community (e.g. sign language interpreters) may no longer be available for people who either cannot or choose not to get the treatment. There's also an issue that, assuming they work similar in this regard to cochlear implants, the treatment has to be performed at a very young age before its possible for someone to consent or choose whether they want to be part of the deaf community.
  - estearum 6mo ago
    I understand these arguments but don't find either of them compelling whatsoever. Here's my test: If my child was deaf and asked me when they were old enough to know that I declined to have them treated based on these arguments, I cannot even imagine them being okay with that.

axus 6mo ago

In 200 years we'll be having the same debate about whether missing the gene for the Human-Machine Interface Organ is a problem in need of eradication.

lazyasciiart 6mo ago
I think hearing has been part of default humans for longer than that.

Noaidi 6mo ago

It’s not, and if you don’t understand this, you’ve never been around the deaf community before. My college language agreement was filled through sign language. Learning about the deaf community was fascinating.

kacesensitive 6mo ago

[dead]

mchusma 6mo ago

Yes let’s go make deafness optional for adults and eradicate childhood deafness. Zero moral ambiguity.

thesmtsolver2 6mo ago

There is no winning with some people. If there was no cure, I am going to bet that these same people will be complaining that the pharma industry doesn't value them enough.

lynx97 6mo ago

Likely because you have no experience with needing accessibility nor the disabled community? There are two approaches, the first usually being followed by non-disabled people: 1. You can only be whole ifwe heal you 2. I am fine as long as the world doesn't make me suffer I can see both sides, but I also see that 1 is incredibly condescending. (blind user)