Hacker News new | past | comments | ask | show | jobs | submit login

I’m curious about the effect on the deaf community. I understand there’s resistance to “fixing” deafness as some consider it a component of their culture and community, not unlike queer people and the attempts to “fix” them.

https://en.wikipedia.org/wiki/Cochlear_implant#Criticism_and...




That would be a terrible reason to give up, or slow down, on research in any area of health science.


There is a fascinating documentary about this, but I cannot recall its name. One segment talks about a form of sign that represents sound, so that the child learns their family’s language (rather than sign language, which is another language entirely). It is very unpopular in the deaf community despite its advantages for daily life.


Sounds like Signed Exact English, which is disliked both for the context around it and for being more awkward than a natural sign language (e.g I think it doesn’t take advantage of using positions in space for grammar, it only uses the hand shapes and movements?)

I don’t know of any language agnostic phonetic sign used as a first language for children: that sounds about as hard as making them learn through writing instead of talking.


They are likely talking about "cued speech".


>It is important to consider the sociocultural context, particularly in regards to the deaf community, which has its own unique language and culture

Frankly, I disagree. I think a deaf person should be entitled to decline a low-risk treatment that would cure or mitigate their own deafness -- but to make that decision for a child is altogether different. Deliberately restricting a human being's sense experience throughout their lives should be considered child abuse, in the same basket as female genital mutilation. It's also about the most selfish thing I can imagine -- especially given that there's no reason I can see why a hearing child of deaf parents can't grow up "bilingual", learning both spoken and sign languages.


This presupposes an awful lot. If it were truly a risk free magic wand you could wave, then I could see your point.

But none of the current options are risk free, and I doubt this one will be. They all have risks, side effects, and probably the chance of failure. And then the question is how low of a risk is acceptable to restore a child's hearing. These are people who would live an otherwise healthy and normal life, and they'd grow up in an accepting deaf family which is likely already plugged into a community. I can't imagine how it would feel to have a serious side effect (or worse) impact your child when you know they could have gone without that procedure and lived a happy, fulfilling life. But I also understand the desire to give your child every possible opportunity.

All of that is to say, I think it is reductive to compare this to child abuse or FGM. There's no right decision, and parents absolutely will need to make a difficult choice, hopefully prioritizing their child's safety and future above all else.


It's often not about the risk, though. It's sadly common for uppercase-D "Deaf culture" people to decline these kinds of treatments for their kids because they want their kids to be deaf too. That's absolutely child abuse.


> Deliberately restricting a human being's sense experience throughout their lives should be considered child abuse

I've got relatives that teach deaf children. most deaf kids who grow up in societies with mostly hearing kids, want to be normal more than anything. At the same time, for many who are eligible for cochlear implants, getting that early before speech development begins in earnest is very important, ideally when they're just a toddler or younger. Early enough and you'll barely notice any difference in their speech, understanding, etc. However, their parents often decline it and say they want to let their child be the one to choose when they're old enough to- which is far, far outside the best window for developing that area of the brain, as well as speech. They might be behind in those ways for the rest of their lives if they're not given therapy to help catch up.

I understand both sides I guess, but if consent is the issue, why not give them the implant and let them choose to disconnect the receiver then when they're older? Obviously, because they won't want to, and rarely ever do.


>not unlike queer people and the attempts to “fix” them.

To be fair, LGBTQ community isn't 'broken.' Some people are inherently gay, lesbian, etc.

Deafness _is_ an actual defect. The weird thing that we should not strive to fix human defects when they are truly defects is astounding.


Some people are inherently deaf, what's the difference?


Being LGBTQ is not a disability or handicap; it’s simply different, like being red-haired or left-handed.


If you feel compelled to remove parts of your body and take opposite sex hormones for life, that’s clearly a disability.

If genes could fix your brain to not feel compelled to swap sexes, that would be a huge win in the quality of life for most individuals.

You can pretend that pretty much anything “isn’t a disability, it’s just different.” But that isn’t true.


You're focusing pretty hard on a single letter of that acronym that makes up a small percentage of the overall community.


What makes you think that deafness is not the same as being left-handed?

I mean objectively, not based on the current cultural norms which will be very different 50 years from now.


“Objectively,” left-handed versus right-handed changes nothing about a person’s capabilities in the world, whereas being deaf does.

Cultural norms is an interesting comparison. Despite there being no actual difference in capacity, cultural views forced many left-handed people to be right-handed, making those people miserable in the process for no good reason.


You can't procreate, that sounds like a pretty big difference in capacity?


Gay people can obviously procreate, nothing about your body stops functioning when you are gay.

What you mean is that they don't have sexual attraction towards people of an opposite gender, where if they had a relationship with them, that relationship would encourage procreation.

To me that just doesn't seem like a "difference in capacity".

I personally don't want children, and will probably seek out a partner who likewise does not want children. If I encounter somebody who wants lots of children, I will see that we have different life goals, and I probably won't be very keen on being in a relationship with them. Do you consider me "damaged" or of "diminished capacity" because of it?


Interestingly enough it was still common to train left handed kids in right handed writing up until maybe 40 years ago as it was seen as some kind of defect obviously.


> “Objectively,” left-handed versus right-handed changes nothing about a person’s capabilities in the world,

As a leftie, this is only true in the current world — I live in a culture with a left-to-right writing system, and yet technology means I don't ever need to use a fountain or quill pen.

I did have one teacher who insisted on "no biro" when I was a kid, but they were also my first introduction to "not everyone is actually nice".


Being deaf is surely different from not being deaf but you can't objectively say it's a disadvantage. It's only a disadvantage in a world built for not deaf people, like being left-handed is a disadvantage in a world built for right-handed people.


I can and did say that. The world is easier for non-deaf people. I can’t imagine even many deaf people would argue against that statement.

The correct way to argue against this isn’t to say that “objectively” the world is the same for deaf and non-deaf people; it’s that there’s a culture and language bound up in deafness that don’t deserve to die thanks to medical advances. That is true, and makes treatments like these and what they mean to the deaf community much more complicated and difficult.


If dolphins could communicate with us they would surely tell how much easier it is when you have ultrasonic hearing. All humans are therefore disabled and in need of fixing.

Or maybe not, if dolphins turn to be wiser than an average human.


If all humans could echo-locate except a subset who couldn't, I would say that group is at a small disadvantage, yes, because the set of things the main group can do is 'objectively' greater. I don't know how relevant it would be for us especially in the daytime, but hey.


I agree. However, whether all kids should receive gene therapy to develop the echo-location once the science allows for that is a more nuanced question.


If most buildings lacked light because the vast majority just echolocated, then the those unable would be disabled.

It is okay for there to be a normal human experience, and define inability to participate as a disability.


> It is okay for there to be a normal human experience, and define inability to participate as a disability.

That's what most people normally do, yes. Then many people out there define an "ability to enjoy hetero sex" as a "normal human experience" and therefore see gayness as a disability that needs a cure.

I'm not arguing about the conclusion here, but about the method and the basis for deriving this conclusion.

The initial comment in this thread declared deafness to be an "actual defect" while gayness "is just people being inherently gay". Such division is completely arbitrary and doesn't follow from any law of nature. Only from current societal views which change a lot with time.


> doesn't follow from any law of nature

Natural selection gave us hearing.


Right, and it also gave us a strong desire for the opposite sex. So if you draw the line based on this principle then gayness and deafness will fall on the same side of this line, whichever side it is.

Hence I write that the initial comment making the distinction between gayness being obviously OK and deafness being obviously not OK, look arbitrary to me. This division is cultural.


It’s a disadvantage in the “built” world, but it’s also a disadvantage in the natural world. If you drop a deaf person in the middle of the forest with no one around, they will not be able hear rivers for water, they will not be able to hear animals approaching, etc.

Being deaf is objectively a disadvantage because 4 senses is objectively worse than 5 senses.


Most of vertebrates (including human's ancestors) lost the 6th sense of electric fields in process of the evolution. Apparently 6 is not always better than 5 from the nature's point of view. Moles went further to loose sight as well.


I don't think that's quite right, evolution makes trade offs and allocates scarce resources, it's not necessarily because such things would not be beneficial.


It's not clear what "beneficial" means if you consider it separately from the resources required to achieve it.

E.g. it's beneficial to be stronger I guess, and gorillas are always strong whether they use their muscles or not. However for humans nature chose a different path where only the muscles you actively use are strong. This approach seem to work great so far, even though it results in many individual muscles of the body being weak. For each and every of these muscles you can argue that making it stronger would be "beneficial" but as a whole it doesn't seem to work out.


> Most of vertebrates (including human's ancestors) lost the 6th sense of electric fields in process of the evolution.

Human ancestors are not human. Also, the ancestor you are referring to was a fish, and could only sense electric fields under water. Why would the ability to sense electric fields under water be an evolutionary advantage for humans who don't live in water? If it's not an evolutionary advantage, then there is no reason it would propagate.

When I said 5 senses are better than 4, I was clearly referring to senses that are useful in our environment. Answer this question: is a deaf person, all else equal, more likely or less likely to survive and procreate relative to a hearing person?

> Moles went further to loose sight as well.

Moles have eyes and can see. Their vision is just not as detailed as humans. Highly detailed sight isn't an advantage for creatures that live in the dark. However, hearing is a huge advantage for people who live in an environment where sound waves exist.

You're clearly wrong here. Stop reaching so hard and just move on.


No, I'm not wrong, I just don't like relying on "obvious" statements like "5 senses are better than 4". We can't know for sure what was "better" until the human race experiment is finished (and then we won't know either obviously).

Consider this: hereditary autoimmune diseases are usually seen as a disadvantage. However they were a huge advantage during the bubonic plague in Europe, increasing the chances of survival by estimated 40% [1]

If we manage to eradicate these disadvantageous genes we may not survive the next pandemic. I don't have the knowledge to predict whether deafness genes or some other property entangled with them will be advantageous 10000 years from now and neither do you. That's all. Now you can enjoy listening to music all you like, it's just beyond the point.

[1] https://www.nih.gov/news-events/nih-research-matters/how-bla...


Hereditary autoimmune diseases are not a sense, and are irrelevant to this discussion about whether hearing is an objective advantage or not.

I’ll ask again, since you must have missed this question: is a deaf person, all else equal, more likely or less likely to survive and procreate relative to a hearing person?


> I’ll ask again, since you must have missed this question: is a deaf person, all else equal, more likely or less likely to survive and procreate relative to a hearing person?

You know the answer: it can be both ways depending on circumstances.

* In the prehistoric world I think he was less likely to survive. The difference doesn't seem to be dramatic though since these genes were not eradicated from the population.

* In the modern world the difference is close to zero with an unknown sign. Given that in developed countries probability to procreate seem to be limited by a desire to procreate, I can't rule out that e.g. deaf people for some reason have 0.1% more desire to have kids, or any other side-effect. So answer to your question is unknown, requires a study to figure this out.

* In the future hearing can be an advantage or a disadvantage depending on how the circumstances evolve. We see that species gain and loose senses depending on the environment.

EDIT: I would also like to clarify this part:

> Hereditary autoimmune diseases are not a sense, and are irrelevant to this discussion about whether hearing is an objective advantage or not.

It's a human trait which was "obviously good" in the past and is "obviously bad" now. Hence I don't trust statements that other human traits like deafness are obviously good or bad. It's interesting to discuss but it's not granted.


How do you hear predators approaching? It's an objective disadvantage.


This feels a bit tenuous. What world do you envisage where it's a completely level playing field? Do we ban talking, music, sound in movies etc etc??


I think building a completely level playing field is a dangerous utopia. Essentially it's the same idea as fixing people to make them equal, just addressed from the opposite end.


Let me help explain, some left handed people can hear and are not deaf. Objectively that is how deafness is not the same as being left-handed.


Well thank you, but the question is why one needs "fixing" and the other doesn't. Parent comment made an argument that being gay is like being left-handed so it doesn't need "fixing". That's fine with me, but I don't see how the same logic doesn't apply to deafness.

Many deaf people enjoy their life as it is and don't welcome your attempts to "fix" them.


I didn’t attempt to “fix” anyone. Everyone has to do that themselves.

What about the deaf people that don’t enjoy their life as it is and do welcome the opportunity to hear?


> What about the deaf people that don’t enjoy their life as it is and do welcome the opportunity to hear?

I would be happy if they had such an opportunity.

The question, once again, was different: should the hereditary deafness be eradicated in childhood by gene therapy once advances of medicine allow that?


I think you changed the question and escalated the severity of the proposal so it became easier to knock down as a straw man.

Originally this was about the desirability and capability of enabling deaf people to hear writ large. But now you are framing it as full scale eradication carried out in a way that bypasses consent.


I'm not, please read the whole discussion.

The root of this thread referenced the cochlear implant which produces best results when implanted at a very young age (staring from 9 months) obviously without consent of the patient.

Other author replied that:

> The weird thing that we should not strive to fix human defects when they are truly defects is astounding.

All my comments are essentially stating the disagreement (or rather lack of agreement) with this point of view.

It declares being deaf as a "true defect" that we should "strive to fix". In the context of the gene therapy now available, I understand this means that a deaf-born children should be "fixed" to remove this "defect". This vision is not crazy, but it doesn't strike me as universally true either.


I read it multiple times and the unresponsiveness of this comment serves to further confirm my assessment, that you were unique in introducing the notion of full-scale eradication without qualification into this conversation. The participant you quoted noted a preferability, but you engaged in an original creative act in equating this to eradication.


> The question, once again, was different: should the hereditary deafness be eradicated in childhood by gene therapy once advances of medicine allow that?

Sure, because it's reversible. If they don't like hearing they can always become deaf again.




Guidelines | FAQ | Lists | API | Security | Legal | Apply to YC | Contact

Search: