Comment by neonstatic
21 hours ago
"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.
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.
Yes let’s go make deafness optional for adults and eradicate childhood deafness. Zero moral ambiguity.
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)
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.
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.
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.
Then they can just not get the treatment...?
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.
1 reply →
I understand their perspective but it’s still silly.
I’m a competent, highly functional person. I also have idiopathic hypersomnia and IBS-D. I’d love a fix for either; I want to live the best life possible.
The whole deaf community opposition to treatment reads as just a defensive mechanism. Being deaf means that one of your limited amount of senses doesn’t work. By definition, they’re disabled. That’d be like people whole are really near or farsighted not using glasses because they’ve decided not being able to see is their culture or personality. It’s ridiculous, and that viewpoint should be more than ridiculed when deaf parents don’t pursue treatment for their children.
The difference between deafness and other disabilities is that deafness forces you to communicate differently. That communication difference creates a separate language community, which develops its own culture, just as every other language community does. When people belong to a certain culture, that belonging often forms a part of their sense of self.
When it comes to children, then, the question is not just "do I want my child to hear better than I can", but also "do I want my child to speak the same language and belong to the same culture that I do" - something most parents want very much.
5 replies →
Ok but maybe first we could start ridiculing people who skip infant and child vaccinations, or teach their kids religion.
1 reply →
What is particularly striking to me is bundling of two factors here:
To me these two are distinct. I don't value people based on their disabilities or lack there of. So for me the ability to fix a body's physical deficiency is always a good thing. It makes life better for the person inside the body. These arguments, that I called stupid, conflate both points and assume that seeing lack/loss of hearing as an impediment automatically passes judgement on people who suffer from it.
I'd also point out that creating an identity around a feature of one's body is a poor man's substitute for loving yourself. No wonder that people who do that get so defensive. Everything becomes a personal attack to them. While it's understandable, it doesn't make it any smarter, wiser, or functional.
A thing that's striking if you spend any time around deaf people is that at the very top there are exactly two distinct branches of human language: vocal and sign. Once this settles into your understanding the implications are profound and it makes it impossible to dismiss as merely failing to love themselves. (??)
Sign language is exactly as rich a linguistic and cultural tradition as all vocal languages combined, it is an equal branch of human expression & life. It's not the hearing or deafness exactly, it's the experience of being one of the participants in and caretakers of this tiny but vibrant and important domain of humanity.
2 replies →
The factor you are missing in the middle is “language and culture developed specifically around this loss of hearing”. The identity isn’t built around lack of hearing, it’s built around a society that will be literally destroyed if the specific feature that mandates membership is eradicated.
As an analogy, how would you feel about a new mandate that all babies learn English as a first language?
4 replies →
I wonder what the actual prevalence of this sentiment among deaf people is. I would expect it to be exceedingly low.
I'm not deaf, but I'm legally blind and autistic. Interestingly, I've never once heard of someone take this position with regards to visual impairment. Why is that seemingly so universally agreed upon to be a "real" disability, and things like autism and deafness aren't?
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.
I think hearing has been part of default humans for longer than that.
[dead]
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.
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.
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.
[dead]