The Deaf Protest Stem Cells to Treat Post Birth Deafness

[Broomstick]

Parents do not automatically know what is best, I agree completely. But by declaring what is and is not important, Alyrium is putting himself in the position of being the arbiter of what is and is not of value. In that sense, he is no better than the parents he doesn't think are worthy to make the decision.

I don't read Alyrium's posts in that manner. He does have less faith than the average person that parents know what's best for their kids, but that's based on both his personal experiences and a greater level of awareness of just how ignorant the average person/parent is on medical and scientific matters. Most parents do not know what is best for a disabled child. Thanks goodness most of them realize they are out of their depth and seek help and advice but the ones that don't can cause significant harm.

The right answer is to let the patient make the decision. Because this situation makes the only right answer impossible, we're left contemplating and weighing the various less right ways of making a decision that needs to be made.

Part of the problem there is that we all have our own baggage and bias. It is not at all unusual for the average doctor or nurse to have an unspoken bias as well as the parents of a child. Add in that many medical decisions are somewhat muddy ethically as medicine is not an exact science and no one can predict the future, much less all possible alternative outcomes.

I agree, that is tragic.

But this brings up the other side of that "you've only got a limited window of brain development" coin. If the child doesn't hear before that window closes, they won't be able to process sound since those brain structures will be repurposed and pruned away just like those language centers. We want to make sure they have the chance to learn language. I see no reason we should not also want to make sure they have the chance to process sound by the same reasoning. The risks may be radically different, but the fundamental principle of what we're trying to do is precisely the same.

For the purposes of this thread, the two most important points are:

1) While both language and sound processing are important, for future quality of life it is more important to be able to process language. Loss of sound perception is less of an impairment than loss of language ability. Conversely, it is more important to preserve language potential than hearing.

2) We do not need to subject a child to stem cell treatment to preserve either of those two things, but most especially not to preserve language capability. There are alternatives for preserving both capabilities (CI's, Sign, etc.)

Keep in mind, too, that a kid with a CI implanted and a developed language center in the brain should, in theory, be able to utilize stem cells later to regrow a damaged organic structure. Using a CI should keep the window open to use a fully developed stem cell technology later down the line, or to consent to experimentation as an adult.

Are you aware why the experiment is specifically targeting infants? I was under the impression that there were factors the researchers were looking at that were unique to children this young that would make research on adults inapplicable to this population or vice-versa. Was I mistaken about this?

So far as I know the major factor in doing this with infants is the language window.

Minor factors are that infants have a less developed immune system and are thus less likely to reject a transplant, and that the more time goes by the more umbilical cord blood degrades in quality. However, if you're using the infants own cord blood the immune system shouldn't be a factor at all

There is a difference in degree, but not in kind. I specifically brought up vaccinations because they're a proven technology that is generally considered to be worth the risks. But it's also one where there is a real cost-benefit analysis that needs to be done even now.

New vaccines are not tested on children, much less infants. Some vaccines have lower age limits, due either to side effects or because beneath a certain age a child's immune system will not reliably benefit from a vaccine.

There is an established protocol to bring new vaccines into use, starting with testing in consenting adults and only gradually lowering the age limit. Such protocols for established technology, yet going to infants for stem cell treatment when it's not first established in adults, is one of the big issues here. It's not safe or reliable in adults, why are we using it in infants? The pro side of the argument will bring up the language window. The anti side brings up the unknown risks and alternatives that currently exist for mitigating the effects of deafness.

I brought it up because I want to make sure that cost-benefit ratio is being weighed here, and not just discarded in the face of a treatment for a problem Alyrium doesn't think needs to be treated at all, ever.

And here you are mischaracterizing Alyrium's true position. Do not mistake his playing devil's advocate for his personal position.

Do keep in mind that Sign, CI's, conventional hearing aids, various forms of speech and language therapy can all be considered treatment for deafness. It is not so much a debate about whether to treat but how to treat.

No. There is nothing objective about you presenting your personal values as a moral absolute. You don't value the sense of sound, but your lack of value for it is not a universal thing. A lot of people, even in just this thread, have noted that the sense of sound is something that they value, so all you've got is your own opinion, which is no more objective than theirs is.

I still think your conflating Alyrium playing devil's advocate with his personal position. That, and even among people with normal hearing the sense of hearing is valued differently. You are correct that human opinion is subjective. We can't know how a child with impaired hearing will value whatever hearing ability he retains down the line. Some will treasure every scrap of sound they can perceive. Others will eventually throw out the technological appliances.

So the device won't interfear at all with the aquisition of sign language. That's what I thought. Which means you've been presenting a false-choice. That's what I thought.

While the device itself won't impair acquisition of Sign the attitudes of others certainly can.

Again, based on my experience in the health care industry: CI's are no longer considered experimental. Indeed, for some disorders they are now the treatment of choice. As a result of this, US health insurance companies will often pay for them and the required follow-up and maintenance as necessary medical expenses. But they only pay for one, not two. We invariably, at any given time, had one or two sets of parents clamoring for a second CI for their kid. They would invariably present statistics that a second CI improved sound perception and speech recognition, which it true, it does improve - by about 3-5%. This is not something you're going to notice in ordinary conversation. While there might be rare situations where the risks are justified (and just to be clear, the risks of CI implantation include not just "it won't work" and risk of meningitis, but also the possibility of damaging or destroying the body's balance sense or permanent facial paralysis) those cases are the exception. For example, a child who in addition to impaired hearing also has impaired vision might benefit greatly from two CI's and there were cases where such children were provided with double CI's. This does not apply to deaf children with normal vision. If (and such cases occurred) a child with a CI is only recognizing speech 50-60% percent of the time they don't need a second CI, they need to be routed into deaf education. Try telling the parents that, though. Yeah, they were hoping the CI would make their kid normal. It didn't. Deal with it properly assholes. They were wailing that we were depriving their child of something that would help him. The medical world was saying the potential benefit was small, too small to justify the risks still present in CI implantation. That, and by leaving one ear untouched another window remains open - the possibility of better technology down the line being used by the patient. Implanting a CI is destructive to the inner ear and cuts off future options. Implant two of them and you're locking the patient into today's technology forever, if something better comes along they probably won't be able to use it. But you can't reason with some people. They start court cases over this. Meanwhile, their kid isn't getting what he needs, education in a format that is most useful to him. Instead of being able to utilize Sign as the primary language with sound/speech as an adjunct the kid might be denied Sign and forced to utilize a communication channel that only works half the time. It's sad. It's tragic. It's going on even as we speak.

This does not apply, of course, to the lucky recipients who achieve an 80-90% speech recognition rate, those for whom a CI is an unequivocal good.

so calling a group of people with cultural experience seeing the wages of idiot parents, objecting to policy level use of CIs or child experimentation despicable is out of place and wrong-headed.

The people I'm calling despicable are the ones who are arguing that children should not recieve medical treatment in order to force them into a culture. The people I'm calling despicable are the ones who are arguing that children should not recieve medical treatment because they personally don't value the capability that the treatment seeks to preserve or restore. The people I'm calling despicable are the ones who would cowardly deny that there is even a choice to be made in order to try to force other people into treating their personal prejudices as objective fact.

I'd also add to the despicable list parents who can not accept their kid doesn't hear well, or at all, and will subject the child to pain and suffering with no gain, who will volunteer their kids for medical experimentation with a new and risky technology for a less than life-threatening reasons, and who will deny their child a proper education in a format that works for the kid in preference to trying to force someone to be normal who never will be.

Experimentation in the way described in the OP really is a manifestly bad idea, and should only be permitted in cases where the condition being treated is life threatening or disabling to the point of guaranteed reduced quality of life. Deafness does not qualify.

Deafness is guaranteed reduced quality of life, just like amputation of the left arm and blindness.

No, actually deafness is not guaranteed to reduce quality of life. Deafness does not impair major life functions, like ability to take care of oneself, or one's mobility. The disadvantages are mostly social.

You think that deafness never needs to be treated anyway, so any medical exploration around that area will never be worth it in your mind, because any risks that come with the treatment will be weighed against nothing because you don't value the goal of the procedure.

Again, you are mischaracterizing Alyrium's position. Alyrium is not opposed to CI's, even though there are quantifiable risks to their use, as just one example.

Where are you getting your "likely" and "unlikely" when the descriptions reffer to "unknown"?

Because I know how this shit works, and keep up with the literature. Stem cell trials have a tendency to go... poorly. It is very very hard to get stem cells into the right place and get them to do what you want them to do when you just inject them into a cavity like the inside of a damaged cochlea. It would be one thing if they were growing these things in vitro other otherwise ex situ and implanting them. They are not. They are hoping to throw them in situ without the necessary developmental signals, and that is a recipe for, at best, no effect, and at worse malignant tumors and systemic immune rejection. The majority of the confidence interval is in the range of "Fucked"

And now you're outright lying. If the best case scenario is "no effect", then there is no point in performing the experiment at all. No one would fund it. No researcher would be interested in performing the study. No regulatory body would approve the experiment.

You don't know how medical research is done.

It is quite common in pharmaceutical research, for example, to dose healthy volunteers to detect adverse effects - in which case "no effect" is, in fact, the best-case scenario and a desirable outcome. Likewise for vaccine research where, if the vaccine doesn't "take", the "no effect at all" alternative is seen as desirable as opposed to worse outcomes. Well, Ok, "no effect" is the second best alternative to "cures the problem", but the point is "no effect" is far from the worst possible result in medical research. It's actually a pretty common one.

I happen to think deafness is only a disability by technicality and social context. It does not by itself harm the deaf person's ability to enjoy life. Quality of life and the hedonic value of future choices are what matter. If the treatment for deafness or any condition has a serious potential to be worse than what is being treated, then it should not be foisted on someone who cannot make the choice themselves.

And since you think that there is absolutely no meaningful benefit to being able to hear, you would not accept the treatment as an acceptable thing to provide even if it had all the risks of getting a papercut from reading a baby book to your child.

Being able to live a meaningful and full life without X is not the same as not valuing X. This is a major stumbling block in discussing disability issues. A paraplegic can live a meaningful, full, and exciting life, travel the world, and so on while rejecting treatments that might potentially restore an ability to walk. It's not that the person doesn't value working legs, but rather they've adapted sufficiently to the situation that they are not willing to run the risks of experimental therapy in order to restore an ability where the lack of that ability is more an annoyance than anything else.

As a much more mundane example: I wear eyeglasses. Without them, I am functionally blind, unable to read, to recognize faces, to safely cross a street. Over the years, many well-meaning people have encouraged me (even harangued me) to get eye surgery to correct this. They go on and one about how annoying glasses are (as if I haven't noticed, over the last 40 years or so), and how unattractive they are, how expensive they are over a lifetime (as if I haven't noticed that, either), the visual distortions of high refraction lenses (which is true, but the human brain compensates for that - YOU might find looking through my glasses distorted but my brain has learned to correct those distortions, I no longer see them) and why WOULDN'T I want that problem fixed?

Well, the truth is that refractive eye surgery is not without risk, and the side effects are largely permanent. If I get a botched pair of glasses I can get them replaced, but botched eye surgery is forever. More than that, though, my problem IS fixed as far as I'm concerned. The current solution works for me, it's extremely low risk, and I see no reason to change. That doesn't make me opposed to refractive eye surgery for others, just for me. And for people at high risk of complications. Again, those most enthused about the technology are largely those who will not be subjected to it.

It's not that I don't value 20/20 vision without needing corrective aids - I do. I annoy my friends and coworkers with 20/20 vision who don't wear safety glasses when using power tools because I value unimpaired vision enough to want to protect it in other people. I have a friend who just can not understand how I tolerate glasses at all (lucky man has better than 20/20 vision). Well, for me the benefits of them are so overwhelming that the downsides barely register in my awareness. My glasses do not hinder me, they liberate me. That doesn't mean I'm going to run out and embrace a technology that promises me normal vision without the use of a prosthesis. Why? Because wearing glasses doesn't impact the quality of MY life. Needing them has never stopped me from doing anything I've ever wanted to do. Having severe myopia and astigmatism does not impair me. It might be gravely disabling to someone who has aspirations of being, say, a fighter pilot but since I've never really felt personally piloting an F-16 to be one of my life goals it's not an issue for me.

And THAT is what is meant when a Deaf person says being deaf isn't disabling - it's not that they are unaware of the difference. They can perceive a difference between themselves and hearing people. What they mean is they don't view it as a problem for them. For the most part it doesn't stop them from doing the things they want to do, and when it does, it's often other peoples' attitudes that are the problem and not the lack of a reasonable solution to a problem that does arise. So a Deaf person isn't going to become a concert violinist - if that isn't an ambition of theirs anyway what does it matter? Sure, being deaf cuts off certain options, but there are so many other options still open that to many it's not that big a deal.

If I lose my leg as an adult and decide I want to risk my long term health in experimental leg regeneration experiments, that is my prerogative. If it happens as a child, my parents have no right to risk my long term health when a prosthetic would give me the best chance at a happy life. If that takes a government or hospital ethics panel stepping in and telling them to fuck off, so be it.

You don't seem to grasp that intelligent, moral people can disagree about what the best chance for a happy life is. In spite of you mindlessly parroting that line to me above.

Yes, and that difference of opinion is why a hearing with hearing can view being deaf as being horrible and a Deaf person can view it as being of no importance.

There are some circumstances where adult people with a condition almost universally say "this sucks, a cure even with risks would be welcome." Deafness, however, is not such a condition. The experience of deaf people varies enormously, with many saying it's more an annoyance to them than anything else and others not bothering with the adaptive technology that is out there. This applies even to people who became deaf after a lifetime of hearing - not all of them feel an urgent need to run surgical risks to correct the lack. The experience of deaf people is no less valid than the experience of the hearing. Because, based upon the experience and input of deaf people, it is evident that being deaf does not always impact quality of life in a negative manner it is reasonable to conclude that running high risks in order to cure it (or more accurately, mitigate it) is not justifiable.

[Cesario]

Parents do not automatically know what is best, I agree completely. But by declaring what is and is not important, Alyrium is putting himself in the position of being the arbiter of what is and is not of value. In that sense, he is no better than the parents he doesn't think are worthy to make the decision.

I don't read Alyrium's posts in that manner. He does have less faith than the average person that parents know what's best for their kids, but that's based on both his personal experiences and a greater level of awareness of just how ignorant the average person/parent is on medical and scientific matters. Most parents do not know what is best for a disabled child. Thanks goodness most of them realize they are out of their depth and seek help and advice but the ones that don't can cause significant harm.

No one knows what's best for their kids. It's a natural side-effect of none of us being omniscient. Seeking out advice and assistance is the best one can do. The trouble comes when he issues a value judgement and presents it as a fact. That's where we are butting heads.

I personally agree with the idea that parents generally have too much power over their children in this culture.

The right answer is to let the patient make the decision. Because this situation makes the only right answer impossible, we're left contemplating and weighing the various less right ways of making a decision that needs to be made.

Part of the problem there is that we all have our own baggage and bias. It is not at all unusual for the average doctor or nurse to have an unspoken bias as well as the parents of a child. Add in that many medical decisions are somewhat muddy ethically as medicine is not an exact science and no one can predict the future, much less all possible alternative outcomes.

And my bias is that I think children ought to be treated as people rather than prehuman chattel owned by either their parents or by the state. Their decisions are the most important, and in situations like this where someone litterally has to make a decision on their behalf, I'm biased towards the choice that will leave the most power in the hands of the child when the time comes that the are capable of making their decision. It's from that prospective that I hold an anti-RIC position, for example.

I also have serious issues with the idea of using nonconsenting children to push your political agenda, which was brought up earlier in this thread with Terralthra.

I agree, that is tragic.

But this brings up the other side of that "you've only got a limited window of brain development" coin. If the child doesn't hear before that window closes, they won't be able to process sound since those brain structures will be repurposed and pruned away just like those language centers. We want to make sure they have the chance to learn language. I see no reason we should not also want to make sure they have the chance to process sound by the same reasoning. The risks may be radically different, but the fundamental principle of what we're trying to do is precisely the same.

For the purposes of this thread, the two most important points are:

1) While both language and sound processing are important, for future quality of life it is more important to be able to process language. Loss of sound perception is less of an impairment than loss of language ability. Conversely, it is more important to preserve language potential than hearing.

2) We do not need to subject a child to stem cell treatment to preserve either of those two things, but most especially not to preserve language capability. There are alternatives for preserving both capabilities (CI's, Sign, etc.)

If CIs were that effective at preserving hearing, why is this research being done at all?

Keep in mind, too, that a kid with a CI implanted and a developed language center in the brain should, in theory, be able to utilize stem cells later to regrow a damaged organic structure. Using a CI should keep the window open to use a fully developed stem cell technology later down the line, or to consent to experimentation as an adult.

Are you aware why the experiment is specifically targeting infants? I was under the impression that there were factors the researchers were looking at that were unique to children this young that would make research on adults inapplicable to this population or vice-versa. Was I mistaken about this?

So far as I know the major factor in doing this with infants is the language window.

Minor factors are that infants have a less developed immune system and are thus less likely to reject a transplant, and that the more time goes by the more umbilical cord blood degrades in quality. However, if you're using the infants own cord blood the immune system shouldn't be a factor at all

So cord blood stem cell research can't be done on anyone but infants. Is that an accurate assessment of one of the major reasons this is being done on infants? If so, I have to agree with the position that if it's either experiment on infants and get a working medical treatment that can improve lives down the line or remain paralyzed forever, I'm inclined to side with the group advocating doing research all else being equal. As I noted earlier, all else may not be equal, and there may be other alternatives to this form of experimentation.

There is a difference in degree, but not in kind. I specifically brought up vaccinations because they're a proven technology that is generally considered to be worth the risks. But it's also one where there is a real cost-benefit analysis that needs to be done even now.

New vaccines are not tested on children, much less infants. Some vaccines have lower age limits, due either to side effects or because beneath a certain age a child's immune system will not reliably benefit from a vaccine.

There is an established protocol to bring new vaccines into use, starting with testing in consenting adults and only gradually lowering the age limit.

Which necessitates experimenting on children otherwise we never find out what the lower limit is. The alternative to experimenting on children is to never vaccinate children. As someone who was sold on the idea of vaccination by the age of eight, and who still considers it to be the single most important scientific development in human history (just passing antibiotics), I would consider that a tragedy.

Such protocols for established technology, yet going to infants for stem cell treatment when it's not first established in adults, is one of the big issues here.

I thought the big issue was that this particular experiment simply wouldn't work on adults. Meaning it would never be "first established in adults".

It's not safe or reliable in adults, why are we using it in infants? The pro side of the argument will bring up the language window. The anti side brings up the unknown risks and alternatives that currently exist for mitigating the effects of deafness.

And I bring up the sensory portion of the brain that processes sound. Since you've left zero actual value in the pro side of the argument due to the language window problem being trivial to bypass using sign language.

I brought it up because I want to make sure that cost-benefit ratio is being weighed here, and not just discarded in the face of a treatment for a problem Alyrium doesn't think needs to be treated at all, ever.

And here you are mischaracterizing Alyrium's true position. Do not mistake his playing devil's advocate for his personal position.

Why should I care whether he really secretly believes what he's saying or not? I'm going to treat him as though he does whether this is a position he's adopting for the purposes of the thread or whether he really believes it.

Do keep in mind that Sign, CI's, conventional hearing aids, various forms of speech and language therapy can all be considered treatment for deafness. It is not so much a debate about whether to treat but how to treat.

Alyrium's position, whether real or "devils advocate" was that there is no disability, and thus nothing to treat. Period. Sign, in his position (and in my view as well) is no more a treatment than spoken english is a treatment solving a problem in non-deaf individuals.

No. There is nothing objective about you presenting your personal values as a moral absolute. You don't value the sense of sound, but your lack of value for it is not a universal thing. A lot of people, even in just this thread, have noted that the sense of sound is something that they value, so all you've got is your own opinion, which is no more objective than theirs is.

I still think your conflating Alyrium playing devil's advocate with his personal position.

I still don't care whether it's his personal position or a fake persona he's assumed for this thread. He's presenting that face in this thread, so I'm going to debate with him as though that is his position.

That, and even among people with normal hearing the sense of hearing is valued differently. You are correct that human opinion is subjective. We can't know how a child with impaired hearing will value whatever hearing ability he retains down the line. Some will treasure every scrap of sound they can perceive. Others will eventually throw out the technological appliances.

Which means he doesn't get the choice to decide for another human being that this sense is of zero value.

So the device won't interfear at all with the aquisition of sign language. That's what I thought. Which means you've been presenting a false-choice. That's what I thought.

While the device itself won't impair acquisition of Sign the attitudes of others certainly can.

Again, based on my experience in the health care industry: CI's are no longer considered experimental. Indeed, for some disorders they are now the treatment of choice. As a result of this, US health insurance companies will often pay for them and the required follow-up and maintenance as necessary medical expenses. But they only pay for one, not two. We invariably, at any given time, had one or two sets of parents clamoring for a second CI for their kid. They would invariably present statistics that a second CI improved sound perception and speech recognition, which it true, it does improve - by about 3-5%. This is not something you're going to notice in ordinary conversation. While there might be rare situations where the risks are justified (and just to be clear, the risks of CI implantation include not just "it won't work" and risk of meningitis, but also the possibility of damaging or destroying the body's balance sense or permanent facial paralysis) those cases are the exception. For example, a child who in addition to impaired hearing also has impaired vision might benefit greatly from two CI's and there were cases where such children were provided with double CI's. This does not apply to deaf children with normal vision. If (and such cases occurred) a child with a CI is only recognizing speech 50-60% percent of the time they don't need a second CI, they need to be routed into deaf education. Try telling the parents that, though. Yeah, they were hoping the CI would make their kid normal. It didn't. Deal with it properly assholes. They were wailing that we were depriving their child of something that would help him. The medical world was saying the potential benefit was small, too small to justify the risks still present in CI implantation. That, and by leaving one ear untouched another window remains open - the possibility of better technology down the line being used by the patient. Implanting a CI is destructive to the inner ear and cuts off future options. Implant two of them and you're locking the patient into today's technology forever, if something better comes along they probably won't be able to use it. But you can't reason with some people. They start court cases over this. Meanwhile, their kid isn't getting what he needs, education in a format that is most useful to him. Instead of being able to utilize Sign as the primary language with sound/speech as an adjunct the kid might be denied Sign and forced to utilize a communication channel that only works half the time. It's sad. It's tragic. It's going on even as we speak.

This does not apply, of course, to the lucky recipients who achieve an 80-90% speech recognition rate, those for whom a CI is an unequivocal good.

Which doesn't change the fact that we're looking at a false choice.

so calling a group of people with cultural experience seeing the wages of idiot parents, objecting to policy level use of CIs or child experimentation despicable is out of place and wrong-headed.

The people I'm calling despicable are the ones who are arguing that children should not recieve medical treatment in order to force them into a culture. The people I'm calling despicable are the ones who are arguing that children should not recieve medical treatment because they personally don't value the capability that the treatment seeks to preserve or restore. The people I'm calling despicable are the ones who would cowardly deny that there is even a choice to be made in order to try to force other people into treating their personal prejudices as objective fact.

I'd also add to the despicable list parents who can not accept their kid doesn't hear well, or at all, and will subject the child to pain and suffering with no gain, who will volunteer their kids for medical experimentation with a new and risky technology for a less than life-threatening reasons, and who will deny their child a proper education in a format that works for the kid in preference to trying to force someone to be normal who never will be.

There's a reason I broke my rant into sentences. Not all the people I mentioned are the same people. Not every parent who makes a decision you disagree with on experimental procedures is the same sort of person who also adamantly refuses to provide acual useful help and education to their children.

Experimentation in the way described in the OP really is a manifestly bad idea, and should only be permitted in cases where the condition being treated is life threatening or disabling to the point of guaranteed reduced quality of life. Deafness does not qualify.

Deafness is guaranteed reduced quality of life, just like amputation of the left arm and blindness.

No, actually deafness is not guaranteed to reduce quality of life. Deafness does not impair major life functions, like ability to take care of oneself, or one's mobility. The disadvantages are mostly social.

I don't think you understand the difference between "the system can provide adaptations to decrease the impact of the disability" and "the system is actively causing all the problems experienced by sufferers of the disability".

Homosexuality is in the later category, deafness is in the former category.

You think that deafness never needs to be treated anyway, so any medical exploration around that area will never be worth it in your mind, because any risks that come with the treatment will be weighed against nothing because you don't value the goal of the procedure.

Again, you are mischaracterizing Alyrium's position. Alyrium is not opposed to CI's, even though there are quantifiable risks to their use, as just one example.

He indicated otherwise in that post. Whatever his real position, the position he's taken in this thread is that deafness is not a disadvantage in any way, and thus requires no treatment.

Because I know how this shit works, and keep up with the literature. Stem cell trials have a tendency to go... poorly. It is very very hard to get stem cells into the right place and get them to do what you want them to do when you just inject them into a cavity like the inside of a damaged cochlea. It would be one thing if they were growing these things in vitro other otherwise ex situ and implanting them. They are not. They are hoping to throw them in situ without the necessary developmental signals, and that is a recipe for, at best, no effect, and at worse malignant tumors and systemic immune rejection. The majority of the confidence interval is in the range of "Fucked"

And now you're outright lying. If the best case scenario is "no effect", then there is no point in performing the experiment at all. No one would fund it. No researcher would be interested in performing the study. No regulatory body would approve the experiment.

You don't know how medical research is done.

It is quite common in pharmaceutical research, for example, to dose healthy volunteers to detect adverse effects - in which case "no effect" is, in fact, the best-case scenario and a desirable outcome. Likewise for vaccine research where, if the vaccine doesn't "take", the "no effect at all" alternative is seen as desirable as opposed to worse outcomes. Well, Ok, "no effect" is the second best alternative to "cures the problem", but the point is "no effect" is far from the worst possible result in medical research. It's actually a pretty common one.

So you open by calling me ignorant of how medical research is done, then you admit that what I said was actually right in your "well, ok... but" sentence. Meanwhile you mischaracterize my position by acting as though I was treating "no effect" as the worst possibility instead of what I was ACTUALLY SAYING, which was that "no effect" is not the best case scenario. This was, in fact, my ENTIIRE POINT with the quoted section, and you handwaving it away while thorwing insults and mischaracterizing my position is sort of annoying.

I happen to think deafness is only a disability by technicality and social context. It does not by itself harm the deaf person's ability to enjoy life. Quality of life and the hedonic value of future choices are what matter. If the treatment for deafness or any condition has a serious potential to be worse than what is being treated, then it should not be foisted on someone who cannot make the choice themselves.

And since you think that there is absolutely no meaningful benefit to being able to hear, you would not accept the treatment as an acceptable thing to provide even if it had all the risks of getting a papercut from reading a baby book to your child.

Being able to live a meaningful and full life without X is not the same as not valuing X.

I agree. Alyrium's stated position is the later.

This is a major stumbling block in discussing disability issues. A paraplegic can live a meaningful, full, and exciting life, travel the world, and so on while rejecting treatments that might potentially restore an ability to walk. It's not that the person doesn't value working legs, but rather they've adapted sufficiently to the situation that they are not willing to run the risks of experimental therapy in order to restore an ability where the lack of that ability is more an annoyance than anything else.

As a much more mundane example: I wear eyeglasses. Without them, I am functionally blind, unable to read, to recognize faces, to safely cross a street. Over the years, many well-meaning people have encouraged me (even harangued me) to get eye surgery to correct this. They go on and one about how annoying glasses are (as if I haven't noticed, over the last 40 years or so), and how unattractive they are, how expensive they are over a lifetime (as if I haven't noticed that, either), the visual distortions of high refraction lenses (which is true, but the human brain compensates for that - YOU might find looking through my glasses distorted but my brain has learned to correct those distortions, I no longer see them) and why WOULDN'T I want that problem fixed?

Well, the truth is that refractive eye surgery is not without risk, and the side effects are largely permanent. If I get a botched pair of glasses I can get them replaced, but botched eye surgery is forever. More than that, though, my problem IS fixed as far as I'm concerned. The current solution works for me, it's extremely low risk, and I see no reason to change. That doesn't make me opposed to refractive eye surgery for others, just for me. And for people at high risk of complications. Again, those most enthused about the technology are largely those who will not be subjected to it.

That last sentence is a lie. Those most enthused about the technology are people like my father, who actively volunteered for the early experiments with full knowledge that the technology was in its infancy. No one with 20/20 vision is going to match the enthusiasm of a person who's actually going to experience a quality of life improvement from the procedure.

It's not that I don't value 20/20 vision without needing corrective aids - I do. I annoy my friends and coworkers with 20/20 vision who don't wear safety glasses when using power tools because I value unimpaired vision enough to want to protect it in other people. I have a friend who just can not understand how I tolerate glasses at all (lucky man has better than 20/20 vision). Well, for me the benefits of them are so overwhelming that the downsides barely register in my awareness. My glasses do not hinder me, they liberate me. That doesn't mean I'm going to run out and embrace a technology that promises me normal vision without the use of a prosthesis. Why? Because wearing glasses doesn't impact the quality of MY life. Needing them has never stopped me from doing anything I've ever wanted to do. Having severe myopia and astigmatism does not impair me. It might be gravely disabling to someone who has aspirations of being, say, a fighter pilot but since I've never really felt personally piloting an F-16 to be one of my life goals it's not an issue for me.

And THAT is what is meant when a Deaf person says being deaf isn't disabling - it's not that they are unaware of the difference. They can perceive a difference between themselves and hearing people. What they mean is they don't view it as a problem for them. For the most part it doesn't stop them from doing the things they want to do, and when it does, it's often other peoples' attitudes that are the problem and not the lack of a reasonable solution to a problem that does arise. So a Deaf person isn't going to become a concert violinist - if that isn't an ambition of theirs anyway what does it matter? Sure, being deaf cuts off certain options, but there are so many other options still open that to many it's not that big a deal.

Here's the thing, with laser surgery, there are people like my father who do view the procedure as worth the risk and the quality of life improvement as sufficiently valuable to justify it. I have no problem with you choosing not to go through it. I have a shit ton of problems if you arbitrarily declare that vision has no value and that vision problems never need to be treated because society could accomocate people with vision problems in other ways, because you don't get to decide that there's no value to it.

If I lose my leg as an adult and decide I want to risk my long term health in experimental leg regeneration experiments, that is my prerogative. If it happens as a child, my parents have no right to risk my long term health when a prosthetic would give me the best chance at a happy life. If that takes a government or hospital ethics panel stepping in and telling them to fuck off, so be it.

You don't seem to grasp that intelligent, moral people can disagree about what the best chance for a happy life is. In spite of you mindlessly parroting that line to me above.

Yes, and that difference of opinion is why a hearing with hearing can view being deaf as being horrible and a Deaf person can view it as being of no importance.

There are some circumstances where adult people with a condition almost universally say "this sucks, a cure even with risks would be welcome." Deafness, however, is not such a condition. The experience of deaf people varies enormously, with many saying it's more an annoyance to them than anything else and others not bothering with the adaptive technology that is out there. This applies even to people who became deaf after a lifetime of hearing - not all of them feel an urgent need to run surgical risks to correct the lack. The experience of deaf people is no less valid than the experience of the hearing. Because, based upon the experience and input of deaf people, it is evident that being deaf does not always impact quality of life in a negative manner it is reasonable to conclude that running high risks in order to cure it (or more accurately, mitigate it) is not justifiable.

There's another side of that coin. Does everyone who can't hear think hearing is a completely trivial thing that no sane person would ever want to bother with anyway? Do no deaf people
(as opposed to Deaf people) consider the ability to hear to be of value?

Arbitrarily declaring something worthless as a way of shortcutting a review process and curtailing any cost-benefit analysis is what I'm objecting to from Alyrium, not coming down on a different side of the debate.

[MKSheppard]

Even today, the DVD sets of GI JOE and TRANSFORMERS G1, a significant cultural artifact of our generation's childhood, remain uncaptioned.

It also took until like 1991 or 1992 for Star Trek II: The Wrath of Khan to be released in a captioned home video format; along with Disney's 20,000 Leagues.

It's also almost impossible to see the movie you want, when you want to, in the theaters. Want to see a movie on Christmas Day? Ok. Want to see Tintin? Fuck you, you'll get Alvin and the Chipmunks 3 in Open Captioning/RWC, at almost every theater in the MD/VA area, AND YOU WILL LIKE IT.

ASL students also have shitty english grammatical skills, even by the standards of US educational institutes.

Q.E.D., I rest my case against the Deaf Community.

[Broomstick]

If CIs were that effective at preserving hearing, why is this research being done at all?

Because CI's don't work for everyone. They work on only a sub-set of hearing impairments. The hope is that if the research is successful - that is, results in a low-risk, high benefit treatment - more deaf and hearing impaired people will be helped to hear.

Results with CI's are inconsistent though, thanks to more experience and better devices, this is improving.

So cord blood stem cell research can't be done on anyone but infants. Is that an accurate assessment of one of the major reasons this is being done on infants?

Nope.

Umbilical cord blood is merely a source of stem cells, it's not the sole source. There's no reason you can't use it in adults other than it's current scarcity of supply. You can also get equivalent stem cells from the placenta and from embryos - except, of course, getting either latter or approval to use them in the US is between extremely difficult and impossible. "Cord blood stem cells" is just an approved-by-religious-conservatives source of embryonic stem cells.

Here is an article about a research project in the UK using such stem cells to treat retina disorders - except it's being done on adults to establish safety first (the fact there is, apparently, some small improvement is a bonus - right now, they're doing this to establish the safety of the procedure more than anything else).

These experiments can be done on adults deafened post-linguistically to establish safety and efficacy before subjecting non-consenting infants to experimentation. When safety and efficacy is established in adults you can then move to adolescents, and then to younger children. That is how these sorts of things are normally done. We learned how to do heart surgery on adults before it was attempted on children or infants, as just one example.

If so, I have to agree with the position that if it's either experiment on infants and get a working medical treatment that can improve lives down the line or remain paralyzed forever, I'm inclined to side with the group advocating doing research all else being equal. As I noted earlier, all else may not be equal, and there may be other alternatives to this form of experimentation.

That is not the dilemma faced here. This treatment can be developed in adults, first.

There is an established protocol to bring new vaccines into use, starting with testing in consenting adults and only gradually lowering the age limit.

Which necessitates experimenting on children otherwise we never find out what the lower limit is. The alternative to experimenting on children is to never vaccinate children.

No, that is incorrect.

FIRST you test a vaccine on consenting adults to establish safety and efficacy. Only when there is a reasonable risk/benefit ratio established in adults do they move to children, as this reduces the risk for the first group of children vaccinated. The first and worst hazards are faced by adults when it is done in that manner, so the risk to the first children so treated are minimized as much as possible.

Such protocols for established technology, yet going to infants for stem cell treatment when it's not first established in adults, is one of the big issues here.

I thought the big issue was that this particular experiment simply wouldn't work on adults. Meaning it would never be "first established in adults".

Frankly, no one knows if it would work in anyone at this point, that's why it's an experiment. But there's no reason you can't test this first in adults for at least basic safety issues, like will or won't these cells grow into a tumor instead of what you want them to be?

The only possible advantage here is that the cord blood of an individual can be utilized in that individual only if the cord blood has been preserved - and that technology just didn't exist 30 or 40 years ago. The problem with that is if the hearing impairment occurred due to genetic issues then using the kid's own stem cells is pointless because they contain the exact same defect!

It's not safe or reliable in adults, why are we using it in infants? The pro side of the argument will bring up the language window. The anti side brings up the unknown risks and alternatives that currently exist for mitigating the effects of deafness.

And I bring up the sensory portion of the brain that processes sound. Since you've left zero actual value in the pro side of the argument due to the language window problem being trivial to bypass using sign language.

I wouldn't characterize that as "trivial" unless there is already at least on Sign fluent member of the immediate family. Without that, it takes a commitment on the part of the family to learn Sign at the same time as they are trying to expose the deaf child to Sign.

(Just to note - I use "Sign" instead of ASL because ASL is only ONE sign language of many, and they are not mutually intelligible. Due to historical accident, French Sign is actually much closer to ASL than British Sign is, and none of the above are related to Martha Vineyard's Sign which arose on its own to due a high percentage of hearing impaired in that community at one time. These issues are pretty universal when it comes to children with severe hearing impairment.

Some kids with severe hearing loss CAN learn language without using Sign, but it's not a reliable method and only a sub-set of deaf kids will be able to do this even with the greatest effort. Use of Sign is currently considered the most reliable means of providing deaf kids with language skills before the critical window closes.)

Well, the truth is that refractive eye surgery is not without risk, and the side effects are largely permanent. If I get a botched pair of glasses I can get them replaced, but botched eye surgery is forever. More than that, though, my problem IS fixed as far as I'm concerned. The current solution works for me, it's extremely low risk, and I see no reason to change. That doesn't make me opposed to refractive eye surgery for others, just for me. And for people at high risk of complications. Again, those most enthused about the technology are largely those who will not be subjected to it.

That last sentence is a lie. Those most enthused about the technology are people like my father, who actively volunteered for the early experiments with full knowledge that the technology was in its infancy. No one with 20/20 vision is going to match the enthusiasm of a person who's actually going to experience a quality of life improvement from the procedure.

But it totally sucks to be someone who wound up WORSE after the experiment than before. Your father had good results. Not everyone does.

There are other aspects that just 20/20 resolution, such as "halos" and loss of contrast that, for some, is not an acceptable trade-off.

I often think those most enthused are those who stand to make a profit off the procedure rather than those who actually undergo it. All too often the risks and side effects are glossed over.

Here's the thing, with laser surgery, there are people like my father who do view the procedure as worth the risk and the quality of life improvement as sufficiently valuable to justify it. I have no problem with you choosing not to go through it. I have a shit ton of problems if you arbitrarily declare that vision has no value and that vision problems never need to be treated because society could accomocate people with vision problems in other ways, because you don't get to decide that there's no value to it.

We're in agreement there, in that no one should be forced to undergo treatment against their will. However, in the case of infants this breaks down because they can't give consent. If a treatment has a very low risk of side effects - which can ONLY be determined through experience - and a high possibility of benefit then society deems it acceptable to make this choice for the child. This treatment, however, is experimental, it's new, and the risks and benefits are not yet established. That is why it is controversial.

There's another side of that coin. Does everyone who can't hear think hearing is a completely trivial thing that no sane person would ever want to bother with anyway? Do no deaf people
(as opposed to Deaf people) consider the ability to hear to be of value?

Even if a person goes deaf later in life and values hearing that person may not value hearing enough to go through the trouble of acquiring and maintaining a hearing aid of any sort, much less a CI. This is a frequent complaint of spouses of the hearing impaired elderly - the other half of the marriage is going deaf or is severely impaired but doesn't want to do anything about it. This almost never happens with people losing their vision, though - no one denies that losing a sense is a loss, but apparently in actual human experience deafness may be a disability but it's not an extremely disabling one.

[Terralthra]

ASL students also have shitty english grammatical skills, even by the standards of US educational institutes.

Q.E.D., I rest my case against the Deaf Community.

So do Spanish and Mandarin/Han-speaking students, so I guess the Mexican and Chinese immigrant communities suck, too.

[S.L.Acker]

ASL students also have shitty english grammatical skills, even by the standards of US educational institutes.

Q.E.D., I rest my case against the Deaf Community.

So do Spanish and Mandarin/Han-speaking students, so I guess the Mexican and Chinese immigrant communities suck, too.

How is that even close to the same when ASL students were raised in an English speaking nation? If second generation immigrants had shitty language skills then I'd say the community was actually at fault.

[Terralthra]

Key word being "English-speaking." Deaf students can't hear spoken language, and it's hardly the ASL community's fault that English is primarily spoken. English grammar is hard to transmit when it is literally impossible to immerse a deaf child in it.

[S.L.Acker]

Key word being "English-speaking." Deaf students can't hear spoken language, and it's hardly the ASL community's fault that English is primarily spoken. English grammar is hard to transmit when it is literally impossible to immerse a deaf child in it.

It sucks to be them, but the reality is people speak most languages. The deaf really ought to do everything they can to communicate with people who can hear and don't know or care about ASL; you know, normal everyday people. You can't just pull back into your community and then claim normal people hate you, in reality they could just care less either way.

[Terralthra]

Key word being "English-speaking." Deaf students can't hear spoken language, and it's hardly the ASL community's fault that English is primarily spoken. English grammar is hard to transmit when it is literally impossible to immerse a deaf child in it.

It sucks to be them, but the reality is people speak most languages. The deaf really ought to do everything they can to communicate with people who can hear and don't know or care about ASL; you know, normal everyday people. You can't just pull back into your community and then claim normal people hate you, in reality they could just care less either way.

...The vast majority do make every effort to communicate with non-ASL fluent people. Do you think Deaf people wander around the hearing world insisting everyone they interact with understand ASL? Once again, please don't argue informed only by ignorance of the Deaf community. My post was specifically responding to MKSheppard's argument that ASL students are not good at English grammar. Of course they aren't! They are not native English speakers! That's not the Deaf community's fault. You can only teach so much grammar to someone who is fundamentally not capable of one of the primary modes of interaction of the target language.

[Simon_Jester]

Question: is Shep talking about deaf students taught by a program designed by the Deaf community? Because in that case, his criticism might be that the Deaf community fails to emphasize English grammar, and that would be fair. Written communication is going to be at least as important to a deaf person as it would be to anyone else, and written communication in English is always going to be the biggest or second-biggest tool a deaf person has for making themselves understood in an English speaking country.

So I'd think being able to write grammatical English would be a very close second priority for the deaf in America, right next to learning to be fully fluent in ASL. If the priority is being dropped too low, Shep could still have a point about the faults in the 'standard' program.

I don't know if it is or not- then again, both you and Shep have a lot more contact with people who educate the deaf, and their students, than I do.

[S.L.Acker]

...The vast majority do make every effort to communicate with non-ASL fluent people. Do you think Deaf people wander around the hearing world insisting everyone they interact with understand ASL? Once again, please don't argue informed only by ignorance of the Deaf community. My post was specifically responding to MKSheppard's argument that ASL students are not good at English grammar. Of course they aren't! They are not native English speakers! That's not the Deaf community's fault. You can only teach so much grammar to someone who is fundamentally not capable of one of the primary modes of interaction of the target language.

Correct me if I''m wrong, but isn't Shep deaf himself? I'd think he'd be in a position to know about these things. Also as Simon has pointed out, grammar still holds true in writing. I've also seen some very strange syntax out of deaf people when typing 'deafie' so this isn't something uncommon.

[Terralthra]

Shep is hard of hearing, but as far as I know, he did not attend a Deaf school.

Grammar training in hearing children begins at the age of approximately six months, when their lingual centers first develop. Written grammar follows on from that, mostly informally, as much as seven to eight years later, and builds almost entirely on existing spoken language grammar knowledge. Deaf children can only begin written English grammar instruction at 7-8 at the earliest. Yes, they lag behind hearing children, as is only natural.

At the California School for the Deaf in Fremont (the program with which I am most familiar), written English instruction starts in preschool, and continues taking up a significant portion of the students' days through high school, both as a separate class and as bilingual ASL/English pedagogy in other classes.

The problem lies in the early exposure. Chomsky and Pinker's research make it very clear that the formal grammar instruction students get is most useful in formalizing and giving names to extant linguistic structures. The grammar of English is not primarily transmitted through them. This early exposure is impossible in deaf children. Deaf schools do their best, in my experience.

[Mayabird]

Shep has a cochleal implant. He was actually one of the first to get one when they were still experimental, IIRC, and has had to get a new one since. He has firsthand instead of secondhand experience with these issues and absolutely loathes the Deaf community. You should ask him why.

[Terralthra]

MKSheppard has had just as much time to chime in with his opinion on the Deaf community as anyone else, and chose to post about the horrible fate deaf people suffer because they didn't get closed captioning on Transformers and G.I. Joe. If he wants to post his feelings and experience, he's more than welcome to do so, and has been all along. Saying I should ask him is silly.

[Lord Zentei]

I happen to like the stick up my ass. It fills me with perverse glee every time I shift in my chair just right.

I read it. It's horse shit.

And this is based on what? I dont see an argument here beyond your say-so, doubtless borne out of your own thoughtful and even-handed consideration of all factors involved.

Oh... wait.

If you think my argument is horse shit, show WHY it is horse shit beyond tautological statements. If the position is so wrong-headed, prove me wrong.

It's not really very complicated. Deaf people lack a sensory perception which hearing people possess. Therefore, there is a host of functions that they cannot fulfill. For instance, your response on the matter:

Deafness is only a disability if it impairs people's ability to function. Deaf people can communicate with others, if not vocally/using sign, then in writing. If they are not abused, their quality of life is good. If someone loses a leg, they are missing something. They knew what it was like to not have one, and have to work really hard to regain old functionality. They have a diminished quality of life. Not having a leg is a problem. A deaf person, unless they are deaf through later hearing loss, does not know the difference. They learn a language, they communicate, and do not miss out on life. I have never seen anyone object to treating the Later Deaf.

...

Why not? If you start from the premise that the deaf do not have a diminished quality of life due to their deafness, which data and their own testimony seem to indicate, there really is no difference. Sure, they cannot hear. But as I have said, that does not make their experience of the world any less meaningful. It is thus just as much a wiping out of a branch of human experience as wiping out homosexuality would be.

It largely revolves around the fact that they can communicate despite their deafness, and that they can learn to feel their life as meaningful despite their deafness. That does NOT mean that they're not worse off than everyone else. There's a whole range of jobs that the cannot perform, for example. Hence, deafness is ipso facto a disability.

but only the existence of the treatment in principle. Neither does the maltreatment of deaf people in the past have anything to do with the legitimacy of a cure for deafness.

The existence of treatments for deaf children have historically lead to A) the horrific treatment of deaf children, and B) amount to a slap in the face to an entire culture.

And therefore, no new treatment in the present and the future should be tolerated?. You're still using the past as a justification for denying future development. Not cool. By that standard, we should deny any medical advances, seeing as historically people with sundry conditions have been misunderstood and maltreated.

Parents really CANT stomach the idea of their child being deaf, and have taken unjustifiable risks--like this clinical trial--to "cure" them of something that need not actually be a handicap. They might be raising the wrong arguments, but that does not mean the concerns underlying those arguments are not valid. Besides, I am arguing the point on my terms, not theirs.

There are a great many things that needn't be a handicap, from tonsils and wisdom teeth, to more serious things like this. Parents still treat them. But whether the risk is unjustifiable is another argument entirely. You'll notice that you're evading the point I was making. The objection I have is when people complain about medical developments threatening some culture or other; not due to the risk/benefit assessment that may or may not also be present in any objections raised.

And because YOU don't feel disabled, therefore OTHER PEOPLE should not have the option to choose a treatment? Go fuck yourselves.

This is not about the deaf person having options. This is about the parents of a deaf person having options, and as has been exhaustively covered in this thread, well-meaning but misguided and irrational parents can and have done a LOT of harm to their children, based on a misconception about the quality of life for deaf people.

And as I have exhaustively pointed out, that's not the basis for my objection.

[Lord Zentei]

"By force and ignorance", indeed. So, because deaf people have created a Deaf culture, therefore a cure for deafness should be withheld from the children of those who are not part of their community, and the lack of such a ban would be "force", and the presence of new medical technology would be "ignorance".

No, the "force" involved would be things like tying the hands of deaf children behind their backs and instituting corporal punishment for gesturing. This is treatment deaf children have undergone in living memory, and up until the 80s was considered standard procedure for deaf children with cochlear implants, regardless of the hearing capability achieved by the implantation. The "ignorance" would be of hearing parents who do not understand linguistic development or the existence/utility of ASL, the probable outcomes and risks for various 'cures' for deafness, and the confluence of these influences on a prelingual child.[/quote]
Objection to past mistreatment is entirely fair. But that's hardly justification to criticizing new medical treatments on the basis of the past, nor on the basis that they threaten some culture or other.

Also "Audism" is a bullshit concept, unless you're talking about active maltreatment of deaf people

Yes, that is what it refers to, and more broadly, the belief that a Deaf person's life is inherently less meaningful or fulfilling due to a lack of hearing.

Well, in that case, providing treatment would hardly be inherently Audist, would it?

[Lonestar]

MKSheppard has had just as much time to chime in with his opinion on the Deaf community as anyone else, and chose to post about the horrible fate deaf people suffer because they didn't get closed captioning on Transformers and G.I. Joe. If he wants to post his feelings and experience, he's more than welcome to do so, and has been all along. Saying I should ask him is silly.

WHOOSH

Right over your head.

He's saying that being deaf so you can be Deaf means you are cutting yourself(and your kids) out of a lot of culture.

Also, pretty sure you don't need to speak English to need to use proper Emglish grammar.

[Terralthra]

He's saying that being deaf so you can be Deaf means you are cutting yourself(and your kids) out of a lot of culture.

And as I've said, the vast majority of Deaf people don't do that. Did you read the whole thread, or are you just trying to snip out little bits so you can snipe?

Also, pretty sure you don't need to speak English to need to use proper Emglish grammar.

I've also already responded to this. Again, if you're going to jump in at the end of a 4-page thread, it helps to read the whole thing.

[Lonestar]

You're missing the point, which is that piss-poor English* grammar can be transmitted through writing as well, "speaking" doesn't nessecarily have anything to do with it.

And the problem with the Deaf Community desiring to not interact with those that hear is bad enough that we've had outrage in the "Community" for the president of Gallaudet University "not being deaf enough".

It's enough of a problem that makes Shep's sneering to have foundation.

[Terralthra]

You're missing the point, which is that piss-poor English* grammar can be transmitted through writing as well, "speaking" doesn't nessecarily have anything to do with it.

No, you're missing the point, which is that English grammar is primarily transmitted to children through saturation in spoken English from the moment their ear canals function decently and their Broca's and Wernicke's Areas function, not in school. Even children in kindergarten who have not been taught to read or write at all have 5 years of English grammar knowledge, and the lessons they are given throughout elementary school serve only to give definitions and formality to the grammatical structures they already have developed in their brains to make sense of the language. Deaf children don't have that saturation, and without it, have no existing structure to formalize. This is elementary modern neurolinguistics and child development.

I can understand you not knowing it, because it's not exactly the most well- or widely-understood science, but I do know it, and I'd appreciate you not telling me that I "missed the point" when you clearly didn't understand what I said to begin with.

Sure, piss-poor English can be, and frequently is, transmitted in writing, but unless you're proposing that degree-holding accredited teachers at publicly-funded schools are illiterate or deliberately teaching deaf students "bad grammar," that's pretty fucking irrelevant, no?

And the problem with the Deaf Community desiring to not interact with those that hear is bad enough that we've had outrage in the "Community" for the president of Gallaudet University "not being deaf enough".

I assume you're referring to the appointment of Jane Fernandes? In that case, I think you're misinformed. The idea that the protests were primarily to do with her "not being deaf enough" is an allegation made up by her and her predecessor. The protesters citing the reasons for their protest as the perceived lack of racial diversity in the selection process, her not being fluent in ASL (it's a bilingual university; appointing a president who isn't fluent in both languages is stupid), and more importantly, her being neither a particularly charismatic person nor a good leader.

The president who was put in because of the original 1988 protests asking for there to be a Deaf president (of a Deaf university! Imagine that!) was born hearing, to hearing parents, and lost his hearing as an adult to a motorcycle accident that caused brain damage. This idea of "not deaf enough" is claptrap.

[Elheru Aran]

Hmm....

Re OP: Good that there's research being done to treat sensorineural hearing loss at a young age. Are the kids going to be worse off for it? Hell no. It's the same as treating a child that's suffered polio or spina bifida or whatever. They're remedying a condition that will lead towards a permanent handicap later in life and thus giving the children a chance at a better life.

Re the rest of this discussion:

I'm deaf since age approximately 18 months from cerebrospinal meningitis; my hearing loss is in fact sensorineural, essentially permanent now; I'm 27 and I doubt my parents went to the extent of banking my cord blood back then. If this was a viable option for me, would I go for it? HELL YES. We tried putting a cochlear implant in my left ear when I was 9, and it didn't work out; my cochleas are thoroughly ossified, something that they managed to miss on a CT scan and so all I have to show for that is a dent in the bone behind my ear and a sizeable scar that shows up whenever I clip my hair short.

I never learned American Sign Language; my parents decided to run with Signed English. They commenced learning/teaching this almost immediately once they ascertained my deafness. Their stated reason for this was that they had observed deaf people and on occasion worked with them previously, and their understanding was that deaf people who learned ASL had less proficiency in English than they felt was appropriate.

I don't know if this has been stated before in this thread, but the basic differences between ASL and Signed English (SE) are that:
--ASL uses non-English grammar; SE obviously uses English grammar
--There are fewer conjunctions and many skipped words in ASL, SE generally follows a practice of 'you sign or spell every word in every sentence'
--ASL lends itself towards broad gestures and physical expressions in place of words. As long as the meaning is conveyed, that is considered sufficient for communication. Signed English is less expressive, but more precise.

The two forms of sign language are not mutually unintelligible; they share largely the same signs for the same words with some exceptions. It is impractical to devise signs for every word in the English language, which is why the manual alphabet exists.

I cannot comment on the level of education that other deaf children receive because for most of my life I've been homeschooled; when I wasn't, in 4th grade I was in a special-education class, and in 8th grade I was moved up to a 'magnet' class of hearing children with an interpreter. I went to Georgia Southern University, where I attended classes with an interpreter and did just fine; I was in the Honors program for two years as well.

As you can see, my English is just fine; I'm not using a spell-checker or editing this post after the fact (although you can't prove that, I guess). Meanwhile, other deaf people... well, here's an example:

Anyone who have pole with light use for in room paint and ceiling need brights light. If you have please message me I can borrow. Thank you

Sarah and I work paint at Tonya's mom house still lot work hope finish by Thursday

This is typical of much written English that I have seen from deaf people that grew up using ASL. This guy went to Tennessee University and has a bachelor's degree, so education is not the issue. What could it be, I wonder?

Terralthra, regarding your point that English grammar is something that's been taught from basically a very young age... how do you explain my proficiency in English even though I've been deaf since 18 months (more or less, my parents have always been vague about it, but it was definitely before I spoke more than a few words)?

Also, I do KNOW that there is a difference between my life and that of hearing people. I KNOW I'm missing out. I KNOW I have a diminished quality of life.

Deafness is a handicap. I don't care to live life with that handicap, but I don't have a choice until the technology to return hearing to people my age with my degree of deafness improves. The fact that there are deaf people out there misguided enough to believe that it gives them something special that distinguishes them from the rest of the human race means nothing to me, and neither does the 'Deaf Culture'. The sooner they lose these notions, the better.

[Terralthra]

Before I respond to your grammar points, may I ask the context of those two snippets? Because there are two points of view on their grammar: one is that they are bad English grammar, the other is that they are perfect ASL grammar using English words so they can be written (glossing). So, where are they from? Are they informal communication with other ASL speakers?

[Broomstick]

Hmm....

Re OP: Good that there's research being done to treat sensorineural hearing loss at a young age. Are the kids going to be worse off for it? Hell no. It's the same as treating a child that's suffered polio or spina bifida or whatever. They're remedying a condition that will lead towards a permanent handicap later in life and thus giving the children a chance at a better life.

I certainly have no dispute with the rest of your post but I did want to comment on this paragraph.

First of all, this is NOT a proven remedy for anything. They could be left no better off, just as a CI did nothing for you other than leave a "dent" in the side of your head. That doesn't mean the attempt is folly. Certainly, we much try new things to come up with new solutions to problems.

If the worst outcome was "no worse off" then this wouldn't be such a contentious issue, but with experimental treatments that's not always the case. My spouse almost lost his right leg due to complications of experimental surgery intended to help him. He suffers bladder and urinary problems in part due to his spina bifidia, but also due to more experimental surgery intended to help him, but now entirely discredited. Experimental treatments can have serious consequences, and they can leave the patient WORSE off than before.

As noted, other experiments involving stem cells have resulted in serious tumors, sometimes fatal. It would really suck if a deaf kid was killed by a treatment intended to help him hear. I'd say that would suck worse than being deaf.

I'm not saying this particular treatment is going to result in bad effects. No one knows that right now. That is, in fact, why some are upset with this. It's not just a group of Deaf people feeling threatened, there are also people concerned about experimentation on children.

[hongi]

I never learned American Sign Language; my parents decided to run with Signed English. They commenced learning/teaching this almost immediately once they ascertained my deafness. Their stated reason for this was that they had observed deaf people and on occasion worked with them previously, and their understanding was that deaf people who learned ASL had less proficiency in English than they felt was appropriate.

I don't know if this has been stated before in this thread, but the basic differences between ASL and Signed English (SE) are that:
--ASL uses non-English grammar; SE obviously uses English grammar
--There are fewer conjunctions and many skipped words in ASL, SE generally follows a practice of 'you sign or spell every word in every sentence'
--ASL lends itself towards broad gestures and physical expressions in place of words. As long as the meaning is conveyed, that is considered sufficient for communication. Signed English is less expressive, but more precise.

The two forms of sign language are not mutually unintelligible; they share largely the same signs for the same words with some exceptions. It is impractical to devise signs for every word in the English language, which is why the manual alphabet exists.

I read about an interesting study where Signed English, because it indeed tries to follow English grammar, becomes unwieldy to use. You make signs slower than you make sounds from your vocal cords, which is true for all signed languages. But natural signed languages are meant to be easily communicable so their grammar is suited for this, whereas constructed signed languages are made to strictly represent the parent spoken language. So in SE, you 'talk' at a slower rate than you normally would in English.

Especially when you want to talk about more complex things. There was a study by Greg Leigh (1995) where teachers who taught kids in Australasian Signed English found it harder and harder to make accurate sentences as they went from pre-school to primary and high school.

[Terralthra]

I read about an interesting study where Signed English, because it indeed tries to follow English grammar, becomes unwieldy to use. You make signs slower than you make sounds from your vocal cords, which is true for all signed languages. But natural signed languages are meant to be easily communicable so their grammar is suited for this, whereas constructed signed languages are made to strictly represent the parent spoken language. So in SE, you 'talk' at a slower rate than you normally would in English.

Especially when you want to talk about more complex things. There was a study by Greg Leigh (1995) where teachers who taught kids in Australasian Signed English found it harder and harder to make accurate sentences as they went from pre-school to primary and high school.

This is true.

For example, one of the attributes of SE (which I've typically heard to as SEE, Signing Exact English) is that it translates things like prepositions and transitive verb particles (talk to, etc.) as separate words, which does tend to be helpful for learning English grammar; however, ASL translates transitive verbs using spatial referents. For example, if I was signing a story about, say, two friends in a relationship, one of whom was having an affair, when I first referred to each person, I would sign their name (or namesign), then point to place within the signing zone, and for future references to that person, I would simply point to the assigned area as a pronoun. Transitive verbs taking any of those people as direct objects would be signed towards their spatial referent, and verb signs from one of them signed from their referent towards me (or another person's referent). SEE's exact translation of names and pronouns is significantly slower and less fluid. This is just one example, there are many many others.

The overall point is that while SEE may have advantages when the structures are transferred to written English grammar, it has significant disadvantages when applied to the primary purpose of a signed language - communication between deaf persons.