"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
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.
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.
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.
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.
> 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.
That's simply: 'what is best for my child' vs 'what is best for my relationship with my child'. Only one of those actually has the best interests of the child at heart. Only one of those opinions is respectable. Growing up with the latter leads to resentment towards the parent generally.
Its more like making that choice: and it having it be permanent. The child can never visit the city. You can always make someone deaf (unethical), but you can't always reverse hearing loss at an advanced age.
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.
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.
What is particularly striking to me is bundling of two factors here:
- Loss of hearing
- Identity built around loss of hearing
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.
Sign language can be learnt by hearing people, but spoken languages cannot be learnt by deaf people.
More crucially: Cultures do not have a right to exist. If my culture thriving is straightforwardly at odds with society's physical wellbeing, I need to change and adapt, not society.
- Sign language is not rich in importance and tradition
- Sign language is not an equal branch of expression and life
- Sign language, and body language, are not important and have no profound implications
Please, tell me where did I say any of those things.
> makes it impossible to dismiss as merely failing to love themselves. (??)
I would encourage you to practice reading with comprehension. I said that building identities around features of one's body is a poor man's substitute of self love. If you don't understand what that means and how it differs from "dismissing deaf people's language as their failure to love themselves", let me know, I will try to explain.
> 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.
Great, at what point did I suggest that any of that is unimportant, prohibited, unworthy of continuing etc. etc.?
I called this statement stupid:
These kind of genetic therapies seem to reinforce this idea of deafness being a problem in need of eradication
It is a problem and there is a need to solve it. Simply because a healthy person can hear. If we can help restore hearing, how could that be controversial? I don't understand. Btw. using the word "eradication" is already a strong sign of emotional imbalance of the speaker
and that the only solution for disabled people to fully assimilate into society is through a medical intervention
If you read the article, noone said anything about this medical procedure being "the only solution (...) to fully assimilate into society". In other words, the person who said this is unhinged.
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?
I know several hearing people who are part of the deaf culture. They grew up with deaf parents or otherwise interact with that culture to join. I'm sure their kids will not be. Just like my grandpa was part of a German speaking culture that my dad never joined.
> As an analogy, how would you feel about a new mandate that all babies learn English as a first language?
I think it would be wonderful in its effects (I am not a native English speaker), but I don't like the "mandate" part.
As for the other point you are making - the language and culture were developed to work around physical issue of not hearing. Those who have learned the language can continue to use it after regaining hearing. I don't see why those who can hear couldn't learn it if they wanted to (e.g. to communicate with someone who decides to not pursue treatment for whatever reason). I also don't see why preserving something, that solves a problem that now has a better solution, is so important.
It’s not a new idea, you can go learn all about preserving languages and cultures and why and how people care. But even if you don’t do that you can stop giving ignorant takes like “they just have their identity wrapped up in their disability” and say “concern about preserving languages and cultures seems stupid”.
You are now putting words in my mouth. I said the quoted text was stupid. The stupid part was the statement, that framing deafness as a problem to solve is somehow hurtful and wrong.
Since you are very eager to police what I can or cannot do, let me return the favor: you can stop projecting beliefs you are angry about on other people and you can stop fighting those people over those projected beliefs.
No, you didn’t say the quoted text was stupid. If you feel you have been misunderstood try reading your own words and figuring out why you don’t even like them yourself.
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?
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.
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.
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.
It had to be H1B Indians and outsourcing to India. As a European, I have seen some "Eastern European devs" around, sure. But they were not present at every company I worked with. Indians were. Quality-wise, it was always the same story, but I'm not going to elaborate. Everyone who is ready to accept it, knows what I would be saying anyway.
No, you probably need to elaborate on that. Because in my experience, the quality from people in India varies just as much as the quality from any other country, including the USA.
What does make a difference is the company they work for. Large hourly "body shops" gives you coders whose quality tends to be lower, regardless if we are talking about an Indian firm or an American firm. Direct hires of independent individuals tend to be higher. But there is always individual variation.
You see people from India more, sure. There are more of them. Over a billion of them, to be precise. Anyone who dismisses a billion people as "always the same" is not being clever, they are being racist. And you know that, otherwise you wouldn't have pre-empted this response with "everyone who is ready to accept it."
Say that there are communication gaps to overcome. Say there are cultural differences. Say that those cultural differences change the assumed business expectations and the mechanisms by which people express their thoughts and opinions. Those things are all true. My recommendation to anyone who has an urge to dismiss an entire population is to instead get to know them: Step up and learn how your teammates think and work. It will make for a better team, better communication, and better results.
I'm not racist. I don't care about race. I do care about culture a lot. By culture I mean a set of "default behaviors" and values that people from said culture are more likely to exhibit. That's where my issues with Indians began and continue. Of course you are right that generalizing over 1+ billion people is a futile exercise. Intellectually, I agree. And yet, in my personal experience, certain behaviors and attitudes they have just keep coming up with frequency, that just doesn't match any other group of people I have been interacting with. I live a rather international life. I interact with people from many, many cultures. I currently live in a culture, that is completely alien to my own, and I love it. It's not a problem of closed mind or some kind of supremacy thinking. I am free from that.
Specifically about Indians - I find that great many of them prefer memorizing over thinking. In the IT consulting days of my career, I noticed that they seemed to have 4-5 solutions, that they would apply to all problems. Whether the solution would fit the problem or solve it, was secondary. If it did, great. If it didn't, well that was someone else's problem. Half of my job was fixing stuff that an Indian "fixed" before me. The appearance of having fixed something was much more important than the actual fixing. It was all about appearances with them. While people in general seek recognition, I have never met another group of people who are so eager to lie and cover things up to gain some perception of short-term bump in status. It's not isolated to work environment. You see, I suspected myself of perhaps being racist in the end, so I would challenge myself to befriend Indians if I met any - just to see. Maybe I was being judgmental and wrong? The last time I tried it, the Indian man I met kept kissing my ass so much I had to cut him off. Why did he do that? Based on what he was saying, he saw me as someone from an "upper caste" (he projected his ideals of a successful businessman on me) and desperately wanted me to know how much I have done for him (I haven't done anything other than having a few conversations about life and business in general). Took me a while to understand that all this excessive praise and ass kissing was an attempt to elevate himself by proximity to something great. Needless to say I am nowhere as great as he portrayed me to be. Later I also found that half the stuff he shared with me was made up to impress me.
Another feature of their culture is extreme pride. They will never stop talking about India, Indian culture, Indian food, etc. They expect you to praise it, be in awe. If you aren't, they will pressure you to change your mind. Since working with them was a universally appalling experience, I wasn't impressed, so that came up a lot. You see this pride and attention seeking everywhere online. A normal person will say "Hello", "Good morning". An Indian will say "Good morning FROM INDIA". It must be mentioned, because it must be noticed and praised. It's just tiring. There is a reason why so many are waiting for country-based filters on Twitter. You wouldn't have guessed which countries are most upset about this.
I am certain that there are reasons and explanations for all of this and that there are many exceptions. As you have mentioned, there are so many of them, they can't all be like that. And fair enough. I just find all of this so tiring, that I don't want to deal with them at all. If 1 out of a 100 is a smart and pleasant person, they are still surrounded by 99 that I don't want to deal with. It might be sad, but it is what it is.
There were historical worries about whether a ban would be feasible, but frontier AI research as we understand it today requires large amounts of specialized compute. Even if we couldn't or wouldn't destroy the chips, we could imprison anyone who tries to start a large training run, the same way we imprison anyone who tries to buy enriched uranium.
Yes, that is true, but it's not my point. I am not saying it'd be impossible to find people who are doing it. My point is that there will always be a group of people, who'd be willing to do potentially dangerous things as long as those things are possible and are believed to provide some sort of advantage. For that reason, those people would either be in decision making positions or have a good enough offer to decision makers. Speaking of uranium - I don't think AI is anything like it (although the AI industry propaganda really wants us to believe that), but even there we have examples of countries that were pursuing nuclear weapons both successfully and unsuccessfully as well as countries that could have them, but choose not to. So the ban itself isn't necessarily the main point here.
It means that if something is physically possible, someone will be doing it, regardless of legal, moral, or social barriers. False on its face? Not that long ago, global public opinion was mortified at the news, that newborn twins in China have been genetically modified. I am old enough to remember the outrage in the late 90s as the world watched the first cloned sheep grow up, get sick, and die. It was possible to do, so someone had done it.
The point is - with the use of law, morality, social pressure, we can moderate the frequency and scale of some phenomena, but we cannot stop it. I think this idea is what prevents some bans. "If the Chinese can do it, and we stop ourselves from doing it, they will gain an advantage and we would lose". Substitute "the Chinese" with whoever is the opponent at any given point in time and you have a rather plausible explanation for why things were the way they were.
I think people really confuse their imagination and expectations with reality. There's so much talk about AGI and mass layoffs. Then there is my experience.
I was talking to Claude and ChatGPT, trying to fix an issue with a simple function in Rust, which is returning a boolean depending on day of week and time of day. The logic looked ok to me, but tests were failing. Notably, my real world data derived tests were succeeding, while brute-force/comprehensive tests written by Claude were failing. I wanted those "just to be sure". Both Claude and ChatGPT were spinning their wheels, introducing fixes, then undoing prior fixes, so on and so forth. They also updated tests. We were going from one failure to another, while they confidently reassured me that "this is the fix", they found the "crucial bug" etc. etc.
Turned out my logic was correct from the beginning. My tests were correct. Claude's tests were broken. I realized this by writing my own brute force test. Just a simple loop with asserts and printlns to see what is failing. I did what the machine was supposed to do for me. In less than 5 minutes I fine tuned the test to actually check what it was supposed to be checking and voila. The "fast" thinking machine episode took me 2 hours and only produced frustration. Sorry I should learn to speak the language - AI reduced my development velocity :)
The only poverty I see coming is from collapse of quality after these dumb machines are used to replace people, who actually know what they are doing.
My issue with borrowing books was the logistics of it. Showing up, borrowing, returning on time, remembering to return. I'd rather own. Plus, I really like Kindle. It eliminates the largest annoyance I had with books - keeping them open while reading. It introduced an annoyance of its own though; it has to be charged. Once a week or two. So not that bad.
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