The Deaf Protest Stem Cells to Treat Post Birth Deafness

[Broomstick]

Also, it's just "Deaf." No one says "a Deaf-ian," and I just explained to you the distinction between deaf/Deaf, so for you to invent new words to describe this distinction is either pretty ridiculously patronizing or incredibly stupid on your part.

In a thread about Deaf/deaf culture; I find this statement hilarious. A Deaf (captial D) is a new invented word. I realize you have an emotional stake in this, but at least acknowledge it.

It's invented, but Deaf with a capital D as a way of denoting "deaf culture" has been around since at least the 1980's when my high school, the local mainstreaming facility for the country deaf, had a definite subgroup of Deaf students. It's not really new, nor is it something he made up just for this thread.

[Terralthra]

The Deaf capitalize the D to purposefully exclude others from their culture.

Factually inaccurate. They capitalize the D to emphasize that there is a culture at all.

It is not one of inclusion, the are the Deaf, if you weren't raised by those that are also Deaf or become deaf later in life you can't join their super secret club.

Factually inaccurate.

The fact that there is a difference between the deaf and he Deaf says you're a lying sack of shit. Just because you're deaf doesn't make you Deaf, thus they obviously do exclude people. They also don't seem to make very many public attempts to include 'hearies' or 'audists' as they label people with hearing into their culture.

This is hilarious. I tell you that your statements are factually inaccurate, so you tell me I'm wrong and say...more factually inaccurate statements. Of the (now 12) specific people I've mentioned who are Deaf, only one was born deaf, none of the deaf were raised by Deaf parents, and 8 are hearing.

Yes, by the nature of any term which describes people, it does not describe all people, but to take that simple and obvious consequence of categorizing people and assigning a deliberate intent to exclude is fallacious and inaccurate.

While your ability to shout wrong information may serve you well in other areas, you're now trying to converse (I guess?) with someone who knows more than you do (not particularly hard, I'll grant) about this area, and knows you are pulling statements out of thin air and trying to pass them off as fact.

This isn't some super power, or something to be proud of, you're lacking a sense.

Strawman.

The Deaf clearly see their impairment as something special given the way they fight anything that would make less and less people deaf. They have opposed CI's on pretty shaky ground when they should have worked for better implementation. Now their own petition shows just how off they are about this stem cell treatment. Unless there is some Deaf group of even more hardline Deaf people doing this...

Actually, the pride they feel as individuals is typically in what they've accomplished, despite being deaf. As a group, they feel pride in having been able to create and maintain a community in the face of public ignorance and active malevolence from governments and other entities.

The opposition to cochlear implants is a minority position even in insular Deaf circles, themselves a minority. Even those do not oppose cochlear implants at all, they oppose implanting them in children. Not to mention that the amount of conditions cochlear implants can treat is a small subset of causes of hearing loss.

If I refuse to sign and cover my mouth a hearing person might find my actions odd, the deaf are fucked when it comes to understanding me at all.

Irrelevant.

Again hardly, the Deaf seem like they would rather people born deaf stay that way because to cure them would destroy Deaf culture. Fuck Deaf culture, they're demonstrably disabled compared to normal people and their taking stances to ensure that others suffer as they do.

Careful, your spittle might short out your keyboard. You know about exactly two stances any Deaf group has taken, both minority positions, and on that evidence, condemn the entire culture.

There are real things that deaf people should be trying to get people to be aware of, they ought to focus on that and actually get something done.

I'm sure the Deaf community welcomes your suggestions, steeped in excoriation and ignorance as they are.

Let's sum up: factual inaccuracies, strawmen, bile, and condescending "I know better than they do what they should be doing, despite not actually knowing much about what they might be doing." Have you considered running for the GOP Presidential Nomination? You'd fit right in.

How many people have come into this thread supporting your side again? Oh wait, nobody. How many people think the stance the Deaf are taking is stupid? Everybody else.

The Deaf are clearly doing a great job with the PR at this stage.

Appeal to popularity. Whether or not a plurality of posters agree with you doesn't make them or you right, and doesn't excuse your ignorant dictates about what Deaf people should or shouldn't be doing.

[S.L.Acker]

This is hilarious. I tell you that your statements are factually inaccurate, so you tell me I'm wrong and say...more factually inaccurate statements. Of the (now 12) specific people I've mentioned who are Deaf, only one was born deaf, none of the deaf were raised by Deaf parents, and 8 are hearing.

Yes, by the nature of any term which describes people, it does not describe all people, but to take that simple and obvious consequence of categorizing people and assigning a deliberate intent to exclude is fallacious and inaccurate.

While your ability to shout wrong information may serve you well in other areas, you're now trying to converse (I guess?) with someone who knows more than you do (not particularly hard, I'll grant) about this area, and knows you are pulling statements out of thin air and trying to pass them off as fact.

Hooray for anecdotes. Oh wait, they don't count as evidence. Go on, find some real numbers that support your position, show the world how the Deaf go out of their way to include hearing people in their world.

They certainly feel threatened by the fact that people having corrective treatments might not be raised, I guess, deaf enough? Would deaf culture remain even if we could completely restore hearing to everybody? I'm guessing not and this is why they're pulling inward to defend their way of life.

Are you also trying to claim that there terms 'hearie' and 'audist' aren't used as prejoratives by Deaf culture? Or is your limited group of Deaf friends your only source so you ignore the fact that there is a visible subset of the Deaf that think this way.

Actually, the pride they feel as individuals is typically in what they've accomplished, despite being deaf. As a group, they feel pride in having been able to create and maintain a community in the face of public ignorance and active malevolence from governments and other entities.

The opposition to cochlear implants is a minority position even in insular Deaf circles, themselves a minority. Even those do not oppose cochlear implants at all, they oppose implanting them in children. Not to mention that the amount of conditions cochlear implants can treat is a small subset of causes of hearing loss.

Slow clap. Wow they accomplished what other people could already do. Gold star!

Opposing implanting a device in the people that it has the best chance of benefiting from it is so mind blowing stupid I don't know what to say to it. I am well aware that even some of the better CI devices only have 24 channels, however they have been shown to improve quality of life enough that many people go for them. Why stamp your feet and say that people shouldn't try to help their children in the best way they know how?

Careful, your spittle might short out your keyboard. You know about exactly two stances any Deaf group has taken, both minority positions, and on that evidence, condemn the entire culture.

You're not exactly doing a very good job championing the cause. You haven't shown any actual evidence for your positions, instead relying on anecdotes to get your point across.

Appeal to popularity. Whether or not a plurality of posters agree with you doesn't make them or you right, and doesn't excuse your ignorant dictates about what Deaf people should or shouldn't be doing.

Sorry to break it to you, but PR is all about popularity. The Deaf are a silent minority and doing shit like this doesn't make them look better as a group. It makes your average fully sensed person look at them like they support keeping children deaf in spite of medical advances. Oddly enough, a vocal subset of them actually think this way opposing CI's in children and now fighting this new treatment.

[Terralthra]

This is hilarious. I tell you that your statements are factually inaccurate, so you tell me I'm wrong and say...more factually inaccurate statements. Of the (now 12) specific people I've mentioned who are Deaf, only one was born deaf, none of the deaf were raised by Deaf parents, and 8 are hearing.

Yes, by the nature of any term which describes people, it does not describe all people, but to take that simple and obvious consequence of categorizing people and assigning a deliberate intent to exclude is fallacious and inaccurate.

While your ability to shout wrong information may serve you well in other areas, you're now trying to converse (I guess?) with someone who knows more than you do (not particularly hard, I'll grant) about this area, and knows you are pulling statements out of thin air and trying to pass them off as fact.

Hooray for anecdotes. Oh wait, they don't count as evidence. Go on, find some real numbers that support your position, show the world how the Deaf go out of their way to include hearing people in their world.

What would you count as evidence? The Deaf community enthusiastically support ASL classes for hearing people, now offered at community colleges and universities in every state of the US, with only a minority of those being professional programs for ASL interpretation as a career.

Just in the Bay Area, De Anza, Foothill, Laney, Ohlone, Skyline, CCSF, San Jose City College, Berkeley Community College, SJSU, SFSU, CSU East Bay, UC Berkeley, Santa Clara University, and Stanford, at least, offer ASL classes, all with support from the local Deaf community. The California School for the Deaf in Fremont offers numerous outreach classes for families of deaf children as well as numerous other classes for hearing people to learn ASL.

A study by Gallaudet University estimated there are just under 500,000 deaf users of ASL, and two to three times that many hearing people fluent in it.

They certainly feel threatened by the fact that people having corrective treatments might not be raised, I guess, deaf enough? Would deaf culture remain even if we could completely restore hearing to everybody? I'm guessing not and this is why they're pulling inward to defend their way of life.

Are you also trying to claim that there terms 'hearie' and 'audist' aren't used as prejoratives by Deaf culture? Or is your limited group of Deaf friends your only source so you ignore the fact that there is a visible subset of the Deaf that think this way.

Well, that's an awful big shift of the burden of proof! Where did you learn that any Deaf people do any such thing?

Actually, the pride they feel as individuals is typically in what they've accomplished, despite being deaf. As a group, they feel pride in having been able to create and maintain a community in the face of public ignorance and active malevolence from governments and other entities.

The opposition to cochlear implants is a minority position even in insular Deaf circles, themselves a minority. Even those do not oppose cochlear implants at all, they oppose implanting them in children. Not to mention that the amount of conditions cochlear implants can treat is a small subset of causes of hearing loss.

Slow clap. Wow they accomplished what other people could already do. Gold star!

Opposing implanting a device in the people that it has the best chance of benefiting from it is so mind blowing stupid I don't know what to say to it. I am well aware that even some of the better CI devices only have 24 channels, however they have been shown to improve quality of life enough that many people go for them. Why stamp your feet and say that people shouldn't try to help their children in the best way they know how?

As I said...most of them don't oppose them. It is a very small minority position to oppose cochlear implants. The majority support their use whenever it would improve quality of life.

Careful, your spittle might short out your keyboard. You know about exactly two stances any Deaf group has taken, both minority positions, and on that evidence, condemn the entire culture.

You're not exactly doing a very good job championing the cause. You haven't shown any actual evidence for your positions, instead relying on anecdotes to get your point across.

Hilarious. You've shown zip evidence at all, and now you question the evidence I have presented as "not good enough"?

Appeal to popularity. Whether or not a plurality of posters agree with you doesn't make them or you right, and doesn't excuse your ignorant dictates about what Deaf people should or shouldn't be doing.

Sorry to break it to you, but PR is all about popularity. The Deaf are a silent minority and doing shit like this doesn't make them look better as a group. It makes your average fully sensed person look at them like they support keeping children deaf in spite of medical advances. Oddly enough, a vocal subset of them actually think this way opposing CI's in children and now fighting this new treatment.

So, because other people are as ignorant as you, your ignorance is justified. Got it.

[Terralthra]

Oh, forgot to note that the 500k number of deaf using ASL and two-three times that many hearing is from 1975, well before the explosive growth in ASL as a foreign language class at colleges around the country.

[S.L.Acker]

What would you count as evidence? The Deaf community enthusiastically support ASL classes for hearing people, now offered at community colleges and universities in every state of the US, with only a minority of those being professional programs for ASL interpretation as a career.

Just in the Bay Area, De Anza, Foothill, Laney, Ohlone, Skyline, CCSF, San Jose City College, Berkeley Community College, SJSU, SFSU, CSU East Bay, UC Berkeley, Santa Clara University, and Stanford, at least, offer ASL classes, all with support from the local Deaf community. The California School for the Deaf in Fremont offers numerous outreach classes for families of deaf children as well as numerous other classes for hearing people to learn ASL.

A study by Gallaudet University estimated there are just under 500,000 deaf users of ASL, and two to three times that many hearing people fluent in it.

Of course people are going to want other people to learn their language. That's hardly surprising. It'd be like saying people in Quebec support French in schools and then showing how many schools offer courses in French.

Also, it makes sense that there would be more hearing people that know ASL. As has been pointed out most deaf couples will have kids that can hear. In a family with only one deaf parent both kids will likely learn ASL thus already creating a 2:1 ratio of hearing to deaf ASL users.

Well, that's an awful big shift of the burden of proof! Where did you learn that any Deaf people do any such thing?

A quote from alldeaf.com

I will ask Hearies for only one favour....

Do you think they would enjoy us calling them deafies?

Another one from alldeaf.com

Think daughter is audist...

Unlike the last post the content of this thread makes it clear that being an audist is clearly a bad thing.

It's sad, the person who posted that thread is actual pretty cool. I know her from a Canucks message board and am I member of an FB group that she's also in.

As I said...most of them don't oppose them. It is a very small minority position to oppose cochlear implants. The majority support their use whenever it would improve quality of life.

I know how the media works, but what do you think the average non-deaf person is going to hear about? When you're already a minority you should be doing everything you can to ensure that people know that most of your group doesn't support something. Also, evidence that this is some small minority?

Hilarious. You've shown zip evidence at all, and now you question the evidence I have presented as "not good enough"?

Linking to a petition which shows that there is a significant portion of deaf people who oppose medical advances is not posting evidence now?

So, because other people are as ignorant as you, your ignorance is justified. Got it.

This is likely to be the only story on deaf issue on this board all year. If this even makes the evening news it will be the only deaf related story in a year there as well. Is it my fault the deaf have no PR and every story most people hear will show them opposing shit that most people will support?

[Alyrium Denryle]

The fact that there is a difference between the deaf and he Deaf says you're a lying sack of shit. Just because you're deaf doesn't make you Deaf, thus they obviously do exclude people. They also don't seem to make very many public attempts to include 'hearies' or 'audists' as they label people with hearing into their culture.

You are an idiot.

Not all deaf people are Deaf. Just like not all gay people are Gay. There need be no attempt at exclusion, and there is not. Some subsection of the deaf community chooses to be very very involved and take up (perhaps misguided) activist causes. Others do not. In the same way that there are gay people who do not go to gay clubs, or wear a black vynyl gimp suit at Pride.

Also, you are committing a strawman. Not all hearing people are Audists. People like you are considered Audists. The hate dripping off your posts is sick, filthy.

The Deaf clearly see their impairment as something special given the way they fight anything that would make less and less people deaf.

Put yourself in their shoes for a second. It was not long ago that deaf children were mercilessly persecuted. In fact, it was common practice for a long time to leave a deaf child on a rock to die and be eaten by crows. They have worked damn hard to create their own language, form their own communities, churches and distinct culture.

If you were in a similar position--if you were in a minority group so reviled and isolated that you had to develop your own language-- how would you react at an attempt to reduce the numbers of people in said group, disregarding the cause of minority status for a moment. Would you be happy about this? Probably not. Remember, the terrible shit that happened to deaf people happened in living memory.

Unless there is some Deaf group of even more hardline Deaf people doing this...

Have you ever gone into a place say... a gay activist group or any other activist group really, and seen who runs the show? The loud (pardon the pun) angry people. Squeaky Wheel and all that. I am a member of several leftist and environmentalist/conservationist groups... and the people who get the most attention are the ones so wrapped up in it, and who are so hard-core that it becomes their life instead of a part of their lives.

Same thing.

And they dont uniformly oppose CIs. They oppose putting them in children who are born deaf. If someone loses their hearing due to injury or illness (a bad fever can do it), they dont oppose that, as a whole.

They oppose the extermination of their language and culture, or what they perceive as being a step in that direction. To an outsider, this might be a good or bad thing, but to them, they are IN that culture, they speak that language. It is an integral part of who they are, one of the primary means by which they self-identify. It is understandable why a good number of deaf people would be extremely nervous. Especially given their history.

Hell, PIGD makes me nervous too, because it could be a step in the direction of exterminating gay people.

How many people have come into this thread supporting your side again? Oh wait, nobody. How many people think the stance the Deaf are taking is stupid? Everybody else.

How about you go fuck yourself. I might not agree with their stance (I am ambivalent, I see both sides, my mind is not made up on the substance), but at least I understand it, and dont hate people for it. Because you exist, I am leaning more toward agreeing with their position, actually.

Hooray for anecdotes. Oh wait, they don't count as evidence. Go on, find some real numbers that support your position, show the world how the Deaf go out of their way to include hearing people in their world.

Active promotion of the hearing learning ASL is one way, dumbfuck.

I'm guessing not and this is why they're pulling inward to defend their way of life.

Wouldn't you?

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.

But see above. What if you were in a minority group with a history of oppression? Wouldn't attempts at "curing" your "condition" (even though you dont see it as a condition) scare the living fuck out of you? Maybe you just lack perspective. You have never been in one of these groups. I am. I know what it is like. You dont.

Or is your limited group of Deaf friends your only source so you ignore the fact that there is a visible subset of the Deaf that think this way.

You are an idiot. I have said it before, and will say it again. You are an idiot. Terralthra is connected with that community. He does not know all deaf people, but he knows enough of them to know what is going on within their community. You have NO such information. He knows more than you.

In just the same way, I know more about how the gay and scientific communities work than you, because I am a part of both.

Of course people are going to want other people to learn their language. That's hardly surprising. It'd be like saying people in Quebec support French in schools and then showing how many schools offer courses in French.

What the fuck do you want? No, seriously. You reject the ONLY way the deaf community can reach out to the hearing. "Please! Learn our language so we can talk to you!"

Jesus fucking christ. You actually do hate the deaf, dont you?

Do you think they would enjoy us calling them deafies?

It is not different than me asking straight people for a collective favor. Oh, and good job removing all surrounding context, you dishonest little weasel.

Unlike the last post the content of this thread makes it clear that being an audist is clearly a bad thing.

Yes. Because Audist is the Hearing equivalent of a racist, sexist, homophobe, or other bigot. Of course it is bad.

Also: If you are going to post quotes, POST THE WHOLE QUOTE AND A LINK TO THE PAGE YOU GOT IT FROM

[S.L.Acker]

Put yourself in their shoes for a second. It was not long ago that deaf children were mercilessly persecuted. In fact, it was common practice for a long time to leave a deaf child on a rock to die and be eaten by crows. They have worked damn hard to create their own language, form their own communities, churches and distinct culture.

If you were in a similar position--if you were in a minority group so reviled and isolated that you had to develop your own language-- how would you react at an attempt to reduce the numbers of people in said group, disregarding the cause of minority status for a moment. Would you be happy about this? Probably not. Remember, the terrible shit that happened to deaf people happened in living memory.

Lots of defects caused children to be left to die in the not too distant past, being a girl might still cause this in some areas. However you don't see a Blind culture or a Down Syndrome culture. Sorry, but when you're the only group doing this people are going to target you.

Have you ever gone into a place say... a gay activist group or any other activist group really, and seen who runs the show? The loud (pardon the pun) angry people. Squeaky Wheel and all that. I am a member of several leftist and environmentalist/conservationist groups... and the people who get the most attention are the ones so wrapped up in it, and who are so hard-core that it becomes their life instead of a part of their lives.

No, this isn't something that I've been a part of. The closest thing might be the involvement I have in my local Kink scene, but they don't go out advocating for the acceptance of Kink. This in spite of Kink being a major part of people's lives in much the same way that being Gay is. I know that the level of discrimination is much different and it's not the best example but it's the closest thing I've been involved in and it's mostly low key.

And they dont uniformly oppose CIs. They oppose putting them in children who are born deaf. If someone loses their hearing due to injury or illness (a bad fever can do it), they dont oppose that, as a whole.

That's stupid though, if you don't implant a deaf child young then the device won't improve their quality of life. This isn't some public school thing where they go out and try to force the deaf out of kids, they're trying to help. Encouraging schools to teach kids with CI's ASL is good, fighting CI's in infants, is stupid.

They oppose the extermination of their language and culture, or what they perceive as being a step in that direction. To an outsider, this might be a good or bad thing, but to them, they are IN that culture, they speak that language. It is an integral part of who they are, one of the primary means by which they self-identify. It is understandable why a good number of deaf people would be extremely nervous. Especially given their history.

If your culture is based on a disability then it being wiped out is by eliminating hearing disorders is by definition a good thing. Identify with who you are and not a single defining trait about yourself and you don't get this situation.

It'd would be like you bitching about total acceptance of gays because it ruins your special culture. It makes no sense.

Hell, PIGD makes me nervous too, because it could be a step in the direction of exterminating gay people.

That worries me too, being gay isn't a disability and thus not something to wipe out. It's not even close to being deaf.

How about you go fuck yourself. I might not agree with their stance (I am ambivalent, I see both sides, my mind is not made up on the substance), but at least I understand it, and dont hate people for it. Because you exist, I am leaning more toward agreeing with their position, actually.

I don't hate on all deaf people, or even all Deaf people. However it's pretty clear that they see their impairment as something special to build their lives around.

Active promotion of the hearing learning ASL is one way, dumbfuck.

That would be like people in Quebec supporting French classes... It's not really anything amazing.

Wouldn't you?

No, I would support giving deaf infants the chance to hear at the expense of my culture. To do anything else is selfish and wrong.

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.

No, it's a disability anyway. It means you can't preform jobs or enjoy things that the majority of people take for granted. It's like saying that a dude born without a dick is perfectly fine because he'll never know what he's missing. In the end he's still missing his dick.

But see above. What if you were in a minority group with a history of oppression? Wouldn't attempts at "curing" your "condition" (even though you dont see it as a condition) scare the living fuck out of you? Maybe you just lack perspective. You have never been in one of these groups. I am. I know what it is like. You dont.

You're right, I'm not in some actively oppressed minority. Though it's still not exactly common to be as into Kink as I am and I feel it could damage my reputation were it to be known to certain people.

You are an idiot. I have said it before, and will say it again. You are an idiot. Terralthra is connected with that community. He does not know all deaf people, but he knows enough of them to know what is going on within their community. You have NO such information. He knows more than you.

In just the same way, I know more about how the gay and scientific communities work than you, because I am a part of both.

This came up because a deaf person I know posted this article, I asked what the big deal was and her friends started trying to explain how this is so very evil. I might not be as connected as Terralthra is, but I've pretty much had this issue rammed down my throat at this point. I wish I did know more, it would probably sway my opinion, but talking about your small community isn't the same as posting evidence and linking me to articles on the matter.

What the fuck do you want? No, seriously. You reject the ONLY way the deaf community can reach out to the hearing. "Please! Learn our language so we can talk to you!"

Jesus fucking christ. You actually do hate the deaf, dont you?

I'm just saying it's not all that altruistic because every group would rather you know their language.

I don't have some massive hate on for deaf people, I have a hate on for the way a very vocal group of them feel on key issues and the way they go about presenting things.

It is not different than me asking straight people for a collective favor. Oh, and good job removing all surrounding context, you dishonest little weasel.

So you would be fine with somebody going up to you and saying, "Hey, gay dude, can I borrow a quarter for the bus?" If somebody called me a hearie they would have started off on the wrong foot.

Yes. Because Audist is the Hearing equivalent of a racist, sexist, homophobe, or other bigot. Of course it is bad.

I'm sorry, but taking the position that hearing is superior to not hearing isn't nearly the same. In fact it's the only logical stance to take. Thus Audist is either a meaningless term or one meant to single people out.

[Molyneux]

Deafness is only a disability if it impairs people's ability to function.

Deafness is considered a disability because it impairs peoples' ability to function!
Much as I sometimes with that I had the ability to turn off my hearing, there are fairly obvious occasions where not being able to hear can put someone in real danger - and beyond that, anyone trying to prevent a "born deaf" infant from being given the ability to hear is essentially choosing a life without music for them. I find that to be monstrous and completely indefensible, regardless of any babbling about "Deaf culture" and the need to protect it.

[Simon_Jester]

Put yourself in their shoes for a second. It was not long ago that deaf children were mercilessly persecuted. In fact, it was common practice for a long time to leave a deaf child on a rock to die and be eaten by crows. They have worked damn hard to create their own language, form their own communities, churches and distinct culture.

If you were in a similar position--if you were in a minority group so reviled and isolated that you had to develop your own language-- how would you react at an attempt to reduce the numbers of people in said group, disregarding the cause of minority status for a moment. Would you be happy about this? Probably not. Remember, the terrible shit that happened to deaf people happened in living memory.

Look, I can understand how this reaction came to be- but it comes across as ghoulish when the argument of the deaf-culture advocates is "we should not invent new ways to allow children to perceive sound, because of the risk that precious deaf children will be harmed, or put at a disadvantage by their inability to hear!"

Homosexuality isn't based on the permanent loss or lack of some ability- there's a switch in a homosexual's brain about which sex they're attracted to, and that's about it. There may be other related behavior patterns (you've talked about this yourself), but there's nothing "in the rules" that defines gay people as "like non-gay people, only lacking in X."

There is definitely something "in the rules" that defines deaf people that way. Deaf people are like non-deaf people, in all ways as worth and as human; the only significant, universal difference is that they lack hearing, an ability which non-deaf people have.

That makes a difference, or should. Because there are practically no people who have hearing who would want to lose it. The only people who view the loss of hearing as a neutral or positive thing are the ones who don't have it- which to me, smacks of sour grapes.

Imagine if we were talking about the ability to lift heavy weights. Imagine I say "these people who cannot lift heavy weights don't think children should be made to exercise, because that undermines the idea that not being able to lift heavy weights is as good as being able to lift them." How good an argument is that? Should we impose a lack of strength on people from birth because there exists a class of people without strong arms, who are afraid they'll be slighted?

So I am deeply disturbed by the idea that "Deaf culture" has the right to prevent children from being treated to make sure they will be able to hear. Those children are being denied the power to choose for themselves whether or not they ever want to be able to hear. And I can't shake the feeling that the attempt to deny them that comes because Deaf culture knows full well what people will choose.

And they dont uniformly oppose CIs. They oppose putting them in children who are born deaf. If someone loses their hearing due to injury or illness (a bad fever can do it), they dont oppose that, as a whole.

They oppose the extermination of their language and culture, or what they perceive as being a step in that direction. To an outsider, this might be a good or bad thing, but to them, they are IN that culture, they speak that language. It is an integral part of who they are, one of the primary means by which they self-identify. It is understandable why a good number of deaf people would be extremely nervous. Especially given their history.

Hell, PIGD makes me nervous too, because it could be a step in the direction of exterminating gay people.

I can understand this- what upsets me is the attempt to deny choice: to impose the condition of deafness on children who would otherwise be born without it. The fact that the choice, for those who have it, is so consistently made in the direction of "I want to hear" makes the denial of the choice all the more profound.

To contrast this with homosexuality, there are people who have the choice of which sex to pursue romantically: bisexuals. Bisexuals don't consistently choose one way or the other. They may become involved with both sexes at different times, or at the same time, or they may choose to stick to one or the other for long-term relationships.

Suppose I handed you a button that took all newborn bisexuals and caused them to permanently lose attraction to one sex or the other. Should you push that button? I'd think the answer would be "no." You should not push a button that turns bisexuals into homosexuals, and I should not push a button that turns bisexuals into heterosexuals. Because neither you nor I have any right to deny people the right to make up their own minds on this.

By trying to enforce the status quo and stop deaf infants from being given the ability to hear, deaf-culture advocates are trying to do exactly this- to make choice impossible because they fear what these people will choose for themselves.

What the fuck do you want? No, seriously. You reject the ONLY way the deaf community can reach out to the hearing. "Please! Learn our language so we can talk to you!"

Jesus fucking christ. You actually do hate the deaf, dont you?

Over on my end, I am quite content to see the deaf promoting knowledge of sign language. It seems perfectly sensible and positive to me.

But if I take a step back, I look at sign language and see a workaround- something people invented to make up for a lack. Sign language exists because there is a need for it, not because it would be a good thing for it to exist even if there was no need- it's an instrumental good, not a good in itself.

So the preservation of sign language and sign language culture is not a good reason to try and ban medical research into providing children with the ability to hear. If the research works well enough, perhaps sign language will eventually become unnecessary. And to me, that doesn't seem any more wrong than the obsolescence of buggy whips and flint knapping would be.

Hell, maybe we'll invent telepathy, and then spoken language will become equally obsolete. Such is progress.

---

...Imagine parents with a hereditary genetic disorder that causes blindness. Would you really be comfortable with those parents saying that it was morally wrong to treat their children so that their children would gain the ability to see? Would it not strike you as strange if those blind parents started using analogies to eugenics or the Nazis or the Stolen Generations when someone tried to give their children working eyeballs?

Would you feel the same way about parents who had a hereditary condition that led them (and their children) to have no arms? To have a life expectancy of twenty years?

Where's the limit?

Only 5% of deaf children are born to deaf parents, so calling it a hereditary disorder isn't right either.

You entirely missed my point- which was all about children born to deaf parents, in cases where deafness is hereditary.

The desire to ensure that more children are born deaf strikes me as very similar to the desire to ensure that more children are born blind, or without the use of one of their arms. None of those seem to me like something that deserves a respected place in our bioethics policies.

Somehow, it seems that the desire to prove that deaf people are as good as people who can hear has mutated into the desire to perpetuate and promote deafness. It's hard to exaggerate how perverse this seems to any person with the sense of hearing, except perhaps by analogy. Which is why I keep comparing this situation to blindness.

Most deaf children are born to hearing parents, who will do literally anything to get rid of the deafness, even at significant risks to their child's health. They do not understand that even though it is a sensory deficit, life goes on. This approach of "do whatever you have to, just so long as my baby doesn't grow up deaf!" is what Deaf people are truly protesting.

So, in pursuit of this, you protest the development of new methods to provide the sense of hearing to children who would otherwise not have it.

Do you not see how this is counterproductive? You dislike the idea of risking a child's health to make sure they have the ability to hear. Why, then, are you opposed to developing less risky ways of providing that ability?

Would you not accept a certain risk to ensure that your child was not born blind? Or that they were born with the use of both their legs? Would you simply shrug and not care about this possibility? Would you expect others to shrug and not care?

And if you wouldn't expect those shrugs, why on Earth would you oppose development of less dangerous and more reliable treatments, treatments to keep children from having to grow up under an unnecessary limitation?

Also, the vast majority of Deaf people weren't born deaf, either. Many lose their hearing to disease or trauma, and these are the same people who don't see themselves as having a major disability. You shouldn't make huge sweeping claims about how Deaf people think or feel without knowing. Would they rather have their hearing back? Maybe. Sometimes. But they wouldn't risk their lives for it.

What if there was a treatment that did not risk their lives, and was quite safe? Would they take that? Have you polled deaf people to ask them about that?

Now, granted that there are deaf people who would refuse treatment even if the treatment was "press magic button and regain some hearing," do they have a right to stop the treatment from being invented? To deny the treatment to children?

We don't acknowledge the right of Christian Scientists to deny medical treatment to their children because they believe medicine to be impious. Why would we acknowledge the right of the deaf to deny medical treatment to someone else's children because they have something to prove about how good life can be while deaf?

Also, it's just "Deaf." No one says "a Deaf-ian," and I just explained to you the distinction between deaf/Deaf, so for you to invent new words to describe this distinction is either pretty ridiculously patronizing or incredibly stupid on your part.

Very well, it comes across as stupid. Might I ask you how you think the capitalization of the word "Deaf," and the transformation of deafness into something along the lines of an ethnic minority, comes across to everyone else?

[Scrib]

Deafness is only a disability if it impairs people's ability to function.

Deafness is considered a disability because it impairs peoples' ability to function!
Much as I sometimes with that I had the ability to turn off my hearing, there are fairly obvious occasions where not being able to hear can put someone in real danger - and beyond that, anyone trying to prevent a "born deaf" infant from being given the ability to hear is essentially choosing a life without music for them. I find that to be monstrous and completely indefensible, regardless of any babbling about "Deaf culture" and the need to protect it.

In essence this.Your culture does not come before the needs of your children. Especially since deafness /is/ a disability and can impair your ability to function. I believe every child should grow up with the best health possible. These people are deliberately choosing to give their children a possibly inferior lifestyle to keep their own culture going.

I hate the crusades to make everything normative and uniform as much as anyone but this is a child we're talking about. It has the chance to enter life with a whole bunch of pathways open to it that you want to shut, it's heinous to not provide that child with as many openings as possible in their formative years.

Hell, if you feel that strongly about it, raise your children and when they turn eighteen, offer them the chance to become deaf. I'd love to see the number of takers and people who want to go back on it.

[Terralthra]

This treatment does not do anything for children born deaf. This only helps those who lose their hearing due to damage to the Organ of Corti (usually due to excessively loud noises). The reason it's being done on infants is that it's difficult to keep umbilical blood viable for a lifetime - keeping it viable for the 6 week to 18 month period of hearing loss they're keeping the window open for is at least possible.

[S.L.Acker]

I just realized I missed a gem:

The bias in the article is revealing: "Children with sensorineural hearing loss experience difficulty developing normal language which usually leads to poor academic and social development." This is demonstrably untrue, and referring to heard/spoken language as "normal" is typical of the attitudes some healthcare providers demonstrate, and the ignorance they have about linguistic development and non-spoken language use.

Spoken language is normal, when the vast majority of the people communicate a certain way that's how we define what is normal. If I started speaking in a language of eye blinks and nose twitches at some advanced level but couldn't understand the spoken word I would be at a disadvantage over people who ca speak and understand spoken words normally. Frankly even if it's not fun deaf kids should be drilled hard in lip reading so they can get along better in a world where people don't want to talk to you with a pad of paper.

This treatment does not do anything for children born deaf. This only helps those who lose their hearing due to damage to the Organ of Corti (usually due to excessively loud noises). The reason it's being done on infants is that it's difficult to keep umbilical blood viable for a lifetime - keeping it viable for the 6 week to 18 month period of hearing loss they're keeping the window open for is at least possible.

No, but it does help restore hearing to children that would otherwise not have it. It would be even better if it worked on children born deaf as well, but science can only do some much.

[Simon_Jester]

By the way, S.L.Acker, you're coming across as a jackass even to me, and I'm not one of the people who's opposed to research into cures for deafness. You might want to take a breath and look back over some of the fucked-up stuff you've said.

This treatment does not do anything for children born deaf. This only helps those who lose their hearing due to damage to the Organ of Corti (usually due to excessively loud noises). The reason it's being done on infants is that it's difficult to keep umbilical blood viable for a lifetime - keeping it viable for the 6 week to 18 month period of hearing loss they're keeping the window open for is at least possible.

I see. Although then I must ask:

If deaf-culture advocates are trying to make sure children born deaf aren't treated to make them hear, and that's their concern because they fear the 'abolition' of deafness as Alyrium and you seem to say...

Why in Heaven's name are they trying to prevent a study that's treating people not born deaf?

[S.L.Acker]

By the way, S.L.Acker, you're coming across as a jackass even to me, and I'm not one of the people who's opposed to research into cures for deafness. You might want to take a breath and look back over some of the fucked-up stuff you've said.

Maybe, this whole thing is just annoying and pisses me off. Anybody who associates with people who think that denying children a sense so they can be like them and fit into a culture that is defined by the lack of that sense is a monster. This view holds in spite of whatever they might have gone through, they're the adults now, they should move past their issues and look at the good of the people their advocating for.

I'm not meaning to come off as hating all deaf people, or putting down their language. Like any large subset of people they have their jackasses and their exceptional individuals. It just seems like they way the Deaf define their culture is designed to be exclusive and people in Deaf culture have a higher chance of supporting jackass ideas than people who happen to be deaf but not in said culture.

[Terralthra]

So I am deeply disturbed by the idea that "Deaf culture" has the right to prevent children from being treated to make sure they will be able to hear. Those children are being denied the power to choose for themselves whether or not they ever want to be able to hear. And I can't shake the feeling that the attempt to deny them that comes because Deaf culture knows full well what people will choose.

Again, rejecting cochlear implants is an extreme minority position. It didn't used to be so, but it is now. this has any more traction, a) I'd be surprised, and b) it's because it's testing on infants. And this isn't a safe treatment. How do I know? Because the article says this experiment is primarily focused on ascertaining whether the treatment is safe.

But if I take a step back, I look at sign language and see a workaround- something people invented to make up for a lack. Sign language exists because there is a need for it, not because it would be a good thing for it to exist even if there was no need- it's an instrumental good, not a good in itself.

As opposed to language itself? Spoken language evolved to fill a need for communication of ideas. So did sign language. If all D/deaf people disappeared, then yes, ASL and Deaf culture would disappear within a generation or two. Is this worth stopping research on curing deafness? Absolutely not. Is it a cause for concern? No less than any other language/culture disappearing, and that does appear to be a cause for concern among many.

...Imagine parents with a hereditary genetic disorder that causes blindness. Would you really be comfortable with those parents saying that it was morally wrong to treat their children so that their children would gain the ability to see? Would it not strike you as strange if those blind parents started using analogies to eugenics or the Nazis or the Stolen Generations when someone tried to give their children working eyeballs?

Would you feel the same way about parents who had a hereditary condition that led them (and their children) to have no arms? To have a life expectancy of twenty years?

Where's the limit?

Only 5% of deaf children are born to deaf parents, so calling it a hereditary disorder isn't right either.

You entirely missed my point- which was all about children born to deaf parents, in cases where deafness is hereditary.

My point is that this is a vanishingly small number, hardly worthy of basing your argument upon.

The desire to ensure that more children are born deaf strikes me as very similar to the desire to ensure that more children are born blind, or without the use of one of their arms. None of those seem to me like something that deserves a respected place in our bioethics policies.

Somehow, it seems that the desire to prove that deaf people are as good as people who can hear has mutated into the desire to perpetuate and promote deafness. It's hard to exaggerate how perverse this seems to any person with the sense of hearing, except perhaps by analogy. Which is why I keep comparing this situation to blindness.

Except, as noted many times, this is a small (admittedly very vocal) minority among the Deaf.

Most deaf children are born to hearing parents, who will do literally anything to get rid of the deafness, even at significant risks to their child's health. They do not understand that even though it is a sensory deficit, life goes on. This approach of "do whatever you have to, just so long as my baby doesn't grow up deaf!" is what Deaf people are truly protesting.

So, in pursuit of this, you protest the development of new methods to provide the sense of hearing to children who would otherwise not have it.

No, I don't, a small minority of Deaf people do. I have expressed concern about this particular experiment because of reasons already noted about infant experimentation and the safety of this procedure (unknown at this time).

Do you not see how this is counterproductive? You dislike the idea of risking a child's health to make sure they have the ability to hear. Why, then, are you opposed to developing less risky ways of providing that ability?

If it were less risk, I wouldn't have any concerns.

Also, the vast majority of Deaf people weren't born deaf, either. Many lose their hearing to disease or trauma, and these are the same people who don't see themselves as having a major disability. You shouldn't make huge sweeping claims about how Deaf people think or feel without knowing. Would they rather have their hearing back? Maybe. Sometimes. But they wouldn't risk their lives for it.

What if there was a treatment that did not risk their lives, and was quite safe? Would they take that? Have you polled deaf people to ask them about that?

I don't have to, because many other people have. A majority of Deaf people would accept such a treatment, with a minority who would not because they're old enough that they don't really want to change what is already comfortable to them, and a much smaller minority who are militant about being Deaf.

Now, granted that there are deaf people who would refuse treatment even if the treatment was "press magic button and regain some hearing," do they have a right to stop the treatment from being invented? To deny the treatment to children?

No, they don't, but this isn't that.

We don't acknowledge the right of Christian Scientists to deny medical treatment to their children because they believe medicine to be impious. Why would we acknowledge the right of the deaf to deny medical treatment to someone else's children because they have something to prove about how good life can be while deaf?

You sure you've been in the US? Many states have laws carving out religious exemptions to vaccinations and blood transfusions, even liberal states, e.g. California.

Also, it's just "Deaf." No one says "a Deaf-ian," and I just explained to you the distinction between deaf/Deaf, so for you to invent new words to describe this distinction is either pretty ridiculously patronizing or incredibly stupid on your part.

Very well, it comes across as stupid. Might I ask you how you think the capitalization of the word "Deaf," and the transformation of deafness into something along the lines of an ethnic minority, comes across to everyone else?

Well, I don't really think about it, because it's been an established language community and nomenclature for such for longer than you and I have been alive. The ASL community in the US essentially began in 1817, and capital-D Deaf has been used in academic literature about the ASL language community for at least the second half of the 20th century. The earliest use of Deaf I have personally read dates from 1961, and that's almost certainly not the first usage of it.

[S.L.Acker]

Terralthra, I'm bowing out. I'll let people that are getting to points across more effectively handle things.

See my post to Simon_Jester to get a bit of insight as to why I came of as such a massive tool.

[Broomstick]

They certainly feel threatened by the fact that people having corrective treatments might not be raised, I guess, deaf enough?

Leaving aside a hypothetical “militant” Deaf minority, there is a legitimate concern among Deaf people that these treatments will not restore useful hearing and the child in question will remain impaired but will not have access to adaptive technologies (including Sign) but will be forced to struggle needlessly.

This has direct roots in past years where children who were “just” hard of hearing were denied the opportunity to learn or use Sign (to the point of tying a child's hands behind his or her back throughout the entire school day) because they had some hearing left, or were outfitted with hearing aids, even if that was inadequate for interpreting speech.

Treatments for the hearing impaired do not always work, and when they do work, they do not always work as well as the hearing people think they do.

Actually, the pride they feel as individuals is typically in what they've accomplished, despite being deaf. As a group, they feel pride in having been able to create and maintain a community in the face of public ignorance and active malevolence from governments and other entities.

Slow clap. Wow they accomplished what other people could already do. Gold star!

Yes, they should get a “gold star” for building lives in a society that scorns them, treats them as less intelligent, used to routinely sterilize them, take away their children, all the while battling a language barrier.

It's like saying we should ignore the accomplishment of leg amputees who learn to walk on prosthetic legs or even run because, hey, everybody can walk, right?

Deaf people do face real obstacles, some physical, some social. Deaf people (small or large D) who build a comfortable, successful life for themselves and their families should get recognition for that accomplishment rather than a condescending golf clap.

Opposing implanting a device in the people that it has the best chance of benefiting from it is so mind blowing stupid I don't know what to say to it. I am well aware that even some of the better CI devices only have 24 channels, however they have been shown to improve quality of life enough that many people go for them. Why stamp your feet and say that people shouldn't try to help their children in the best way they know how?

Because people frequently don't know the best way. Back when I worked in the health insurance world there was a real and constant issue of hearing parents continually attempting to get approval to implant CI's in children for whom it was not appropriate, whom a CI would not help. Oh, lordie, the evil insurance company won't let my child hear! No, you mouth-breathing idiot, it won't help your kid. If a child can not be helped by a CI what they need is to learn some version of Sign and go to a school that can accommodate his or her needs.

Aside from the most militant Deaf, that is the real concern of Deaf people in this matter – that the medical world will come to rely so strongly on things like CI's that children who aren't helped by them will not receive appropriate care and education. They fear this because they themselves have either experienced it, or seen it happen to others. This is not an irrational or baseless fear on their part but a fear born of past experience.

Even when a CI is successful it is NOT normal hearing. There can still be a myriad of problems with communication, and a child may need more than just a CI in order to function optimally. Deaf people who have struggled with hearing aid technology for decades already know that technology is not always the answer, and not always the full answer.

The Deaf are a silent minority and doing shit like this doesn't make them look better as a group. It makes your average fully sensed person look at them like they support keeping children deaf in spite of medical advances.

But the Deaf, unlike the “fully sensed person”, know that CI's have limitations. Seriously, I know all too many people who think CI's are a magical cure and if you just slap them into deaf skulls everything is A-OK and those folks are normal. You're letting the most extreme position obscure the legitimate concerns of the community that is directly affected by this.

A comparison with another group of disabled folks is the cure-vs-adapt debate among those with spinal cord injuries (SCI). Many people, particularly able-bodied ones, champion organizations like the Christopher Reeve Foundation for seeking a cure to paralysis. What isn't so well know is that there is a group within those with SCI who would rather see the money go to adaptive technologies – essentially, ensuring everyone with a SCI who needs a good wheelchair gets one, and can hire home health aids or whatever else they need to function as is. This is, I'm sure, baffling to many. Why wouldn't those folks want a CURE? Don't they want to WALK? Well, some of those folks think a cure is so far off they don't want to sit in the back bedroom waiting for it, they want to get out and do things NOW. They reason that a good wheelchair NOW let's them get out in the world NOW and have a rich, fulfilling life even if they can't hopscotch.

Likewise, there are Deaf folks who don't care if some people choose CI's but don't want them to become the ONLY technology for deaf people, they want the full array of choices to be available, so the individual can choose what best works for him or her. They want to keep Sign and alarm clocks with flashing lights instead of sound and all those other things that have been developed.

Again, there is another parallel with another disabled group. Braille was developed as a form of writing for the blind, but over the past few decades there has been a push among educators to neglect it, to not teach the visually impaired to use it but rather to rely on audio books and magnification and so forth instead. I've known a couple of parents who had children with severely impaired vision who wanted their children to learn braille but it was actively discouraged by rehab people who basically felt it was reserved only for those completely blind and shouldn't be taught to people who had some residual vision. Even if it would be useful. This is of some concern in the blind community. One of the concerns is that this is driven by cost rather than the best interests of the blind – braille books are expensive. They're also bulky. They're also pretty damn useful if you have shitty vision. I used to work with a blind woman who started losing her sight in her 40's. She wanted to learn braille but, again, was actively pushed away from it by rehab people, told it was “too difficult” to learn at her age, and so forth. She learned it anyway. As she pointed out, when you're cooking and searching through your spice rack you want to know if that yellow stuff is mustard or curry, and the damn bottle won't fit into the slot designed for flat paper on that print magnifier over in the corner there.

All too often decisions about what works best for the handicapped are made by able-bodied, fully-sensed people who just do not know what it is like to exist with a handicap, who don't know what really works and what doesn't.

Also, it makes sense that there would be more hearing people that know ASL. As has been pointed out most deaf couples will have kids that can hear. In a family with only one deaf parent both kids will likely learn ASL thus already creating a 2:1 ratio of hearing to deaf ASL users.

Actually, in a family where there is only one deaf person it's likely they kids won't learn Sign. Why should they? It's like assuming that in a family in the US if one parent speaks Italian all the kids will automatically be fluent in it. No, they won't. They probably won't know more than a word or two of it.

Where you tend to get hearing people learning Sign is hearing children of TWO deaf parents (where the hearing child learns Sign as a first language, because that's what's used in the home nearly exclusively. As deafness does not usually impair fertility, it's not uncommon for deaf parents to have several children. A lot of Sign interpreters are hearing children of deaf parents.

Another group are hearing parents who, upon learning their child is deaf, make the effort to learn Sign themselves, and encourage siblings to also take it up. It shouldn't be a surprise that hearing parents of deaf children are also divided on how best to serve the needs of these children.

On the flip side, there are anecdotes both sad and amusing of deaf parents, seeking to do what's best for their hearing children, doing things like playing records so their young children are exposed to speech but playing them at the wrong speed, or playing videotapes with the sound on “mute” or too loud. Deaf people can be incredibly noisy, I could see where a hearing children in a family of deaf people might actually be at a disadvantage at times.

Linking to a petition which shows that there is a significant portion of deaf people who oppose medical advances is not posting evidence now?

While the tone of the petition is strident, it does raise the ethical issue of experimenting on children. This IS an ethical minefield. It really does involve surgery of currently unknown consequences on people who can not give their consent. In the end, the community at large may feel these concerns are unfounded but absolutely people SHOULD raise the question of whether or not this is in the best interests of these people

How many people have come into this thread supporting your side again? Oh wait, nobody. How many people think the stance the Deaf are taking is stupid? Everybody else.

How about you go fuck yourself. I might not agree with their stance (I am ambivalent, I see both sides, my mind is not made up on the substance), but at least I understand it, and dont hate people for it. Because you exist, I am leaning more toward agreeing with their position, actually.

What am I, S.L.Acker? Chopped liver? Or haven't you been reading this thread at all?

I tend to take the same stance a Alyrium. Even where I don't agree with the Deaf, I at least make the effort to try to see their viewpoint. They really do have some legitimate concerns here, based both upon past treatment of deaf people, and a possible more realistic understanding of the limitations of current technology than the general public has.

Lots of defects caused children to be left to die in the not too distant past, being a girl might still cause this in some areas. However you don't see a Blind culture or a Down Syndrome culture. Sorry, but when you're the only group doing this people are going to target you.

Except... those groups DO have activists, some quite militant in their views, even if you aren't aware of them. I've already spoken of the braille/non-braille debate among the blind. With Down's, there is currently a debate on whether or not plastic surgery to make their appearance more like normal peoples' is ethical or not. There is also an overlap between Downs and Deaf, and Downs children frequently have hearing problems, and whether CI's or Sign is the best approach for deaf children with Downs is yet another debate going on.

Just because YOU are not aware of communities among the disabled does not mean those communities don't exist.

That's stupid though, if you don't implant a deaf child young then the device won't improve their quality of life. This isn't some public school thing where they go out and try to force the deaf out of kids, they're trying to help. Encouraging schools to teach kids with CI's ASL is good, fighting CI's in infants, is stupid.

Except implanting a CI doesn't automatically improve a child's life. They don't even work part of the time – we even have at least one person on this message board who got a CI and it didn't work at all. CI's are appropriate only for a subset of deaf/hearing impaired children. Even when the patients are selected based upon who is most likely to be helped they don't always work. There are actual risks to the surgery. They require more just slapping the device into someone's head, not only is there maintenance to be done, but these children STILL require additional speech therapy and work to fully utilize these devices, you can't just put them in and go OK, problem solved.

It is all too easy for a school to NOT include the kid with the CI in special ed and Sign because, hey, they're cured, right? No, they're not. Some children with CI's might not need Sign, might do very well in a hearing world, but not all have such a positive outcome. But there is definitely an incentive to cut back on the special ed for kid's with hearing problems because those are expensive, and I can see “Oh, the kid has a CI, they're normal now” being used as an excuse.

Back in my high school, which had a wing dedicated to deaf education, way before we had CI's, they pushed HARD to get those kids into mainstream classes. As a result, you often got kids in mainstream classes where it wasn't appropriate. I can only imagine this tendency has gotten worse over time, and it would be all too easy for that to happen to a kid with a CI that didn't work out perfectly. I remember hearing “What's the kid's problem, he's got a hearing aid, doesn't he?” Yeah, Bob over there has a hearing aid but, you know, he still can't hear like the rest of us. Same thing for a CI – they're good, but they're far from perfect even when they work.

If your culture is based on a disability then it being wiped out is by eliminating hearing disorders is by definition a good thing. Identify with who you are and not a single defining trait about yourself and you don't get this situation.

That would be a hell of a lot easier if the rest of the world didn't define people like that. Deaf people all too often become “the deaf guy over there”, just as the blind guy becomes, well, “the blind guy” or you have “the guy in the wheelchair” or whatever. I think deaf people want to be seen as multi-faceted individuals but they often are not treated in that manner by others.

That worries me too, being gay isn't a disability and thus not something to wipe out. It's not even close to being deaf.

Arguably... yes, being gay IS a disability. It tends to reduce fertility (even if there are work arounds for that). It puts you at higher risk of assault and murder. It has social implications that can affect everything from education to how medical people treat you to effectively barring you (legally or not) from certain professions. It's not a physical disability, but let's not pretend that there aren't downsides to homosexuality, even if most of them are socially imposed.

No, I would support giving deaf infants the chance to hear at the expense of my culture. To do anything else is selfish and wrong.

How much of a risk is justified for that goal? Is having the “chance” to hear worth the risk of meningitis? Is it worth the risk of implanting stem cells that might grow into a tumor rather than a cochlea?

At a certain point some parents need to be slapped to get their attention and told “you're kid is not normal, your kid will not ever be normal, and it's time to deal with reality”. What is selfish and wrong is trying so hard to fix a problem that you cause additional harm. This is not idle speculation when it comes to the handicapped. I have personally seen and met people whose parents, with the best of intentions, absolutely refused to allow them to learn Sign to avoid their “dependence” on such a “crutch” with the result that these deaf kids never learned ANY language at all!

That is part of the problem here – there is a small window in which to learn language and once it closes it closes forever. If you have not learned SOME language by that time you will NEVER learn a language, any language. You will, at best, be able to form crude, two-word sentences. There were a couple of kids at my high school who had been isolated from other deaf people for years and thus never learned Sign, but who had also never been able to master lip-reading. They did not have a language. They would NEVER have a language. It was fucking heart-breaking. These weren't wild animals, they were people of probably normal intelligence (hard to know for sure with no language skills) who were able to behave (usually, they were teens, after all) and dress themselves appropriately and so forth who could not communicate with anyone. And would never be able to communicate with other people. All because well-meaning adults had, with the best of intentions, denied them what they needed, exposure to a language they could actually use. They made the disability worse by inappropriate treatment.

Deaf people know this has happened to people, that it is STILL happening to some people. There is a real concern that some infants will get CI's and too much time will be spent trying to make the CI work that by the time someone realizes that no, it's not working as well as hoped and this kid needs to be treated as a deaf kid it will be too late, the language window will close, and the child will be forever unable to communicate meaningfully with other human beings.

That's one reason why Deaf people push so damn hard for Sign – because they know that the kids HAVE TO learn a language, ANY language, by a certain point or they will never, ever have a language at all. Sign is a fully developed human language. It's actually a group of languages, as there are many sign languages, but they are legitimate, fully realized languages. If a kid with a hearing problem learns one of the sign languages then the language ability in the brain will be activated and the kid will not only be able to communicate in Sign, he or she will also retain the ability to learn other languages. The Deaf community is actually the community in the US with the largest number of bilingual people – so really, it's sad when someone says it's not a “real” language, or says the Deaf don't understand language, when in fact most of them know more languages than the US hearing community.

No, it's a disability anyway. It means you can't preform jobs or enjoy things that the majority of people take for granted.

Yeah, yeah – you know, I'm colorblind. There are jobs I'm not allowed to do on account of that. Am I disabled or not? You know, I don't view it as an impairment. Why? Because it doesn't interfere with my life (I never really wanted to do those jobs anyway, so I don't miss 'em).

Disability isn't just about the physical. Ask any disabled person, a LOT of it has to do with other peoples' perceptions of you.

It's like saying that a dude born without a dick is perfectly fine because he'll never know what he's missing. In the end he's still missing his dick.

Um... you DO know that for 51% of humanity, lacking a dick is actually seen as the PREFERRED state? How does my lacking a dick make my life less meaningful? Truthfully, I don't mind missing out on the experience of getting hit in the crotch while possessing male genitals, it looks REALLY painful.

Yes, I DO think being born without a dick is, in fact, perfectly fine. Really, you're just displaying your own bias here. Seriously, you regard all woman as disabled or something? How bizarre.

What the fuck do you want? No, seriously. You reject the ONLY way the deaf community can reach out to the hearing. "Please! Learn our language so we can talk to you!"
Jesus fucking christ. You actually do hate the deaf, dont you?

Not to mention it's a real slap in the face to all the deaf people who DO manage to learn to speak and lip read. Man, to go through all that trouble to learn to communicate in a mode you can't even directly experience only to have this hater on a message board totally dis your efforts by believing the only way you can communicate is by having other people learn Sign, why the fuck do they bother, huh?

I don't have some massive hate on for deaf people

No, but I think you are ignorant of them and their concerns.

Much as I sometimes with that I had the ability to turn off my hearing, there are fairly obvious occasions where not being able to hear can put someone in real danger

Deaf people are aware of that. There are instances where pre-lingually deaf people ARE given CI's, usually for that very ability to provide a warning of danger. This is most common in deaf people who are visually impaired or becoming so. Although they will never be able to use a CI to decipher speech or make much sense out of hearing, the perception of some sort of sound, along with relative volume, can assist them.

It's usually better, and certainly less invasive, for the deaf to use devices that translate audible warnings into visual ones – usually a flashing light type of arrangement. An example is a type of baby monitor that, instead of transmitting the sound of a crying baby, will cause a light to flash in another room if the baby is crying. It's quite common in buildings these days to have fire alarms that flash a strobe as well as sound a warning. However, for a person impaired in two senses improving one of those two even marginally just for the ability to warn of danger might justify quite a bit of invasiveness.

I've yet to met or hear of someone who would oppose improving the senses of the deaf+blind.

It's just that some of the deaf question if surgery is really necessary when there are already adaptive technologies that are both less expensive and less invasive that can give visual warning of audible danger signals.

- and beyond that, anyone trying to prevent a "born deaf" infant from being given the ability to hear is essentially choosing a life without music for them. I find that to be monstrous and completely indefensible, regardless of any babbling about "Deaf culture" and the need to protect it.

Deaf people do not live in a world without music. They don't experience music as the hearing do, but they are aware of it (and usually enjoy it at a volume that, if you will pardon the expression, is deafening). Only a minority of deaf people are truly completely deaf, quite a few have some sort of residual hearing. Music is, after all, vibration, and the deaf do perceive vibrations. They tend to like a lot of percussion and deep bass notes – you know, the stuff you can easily feel as well as hear. Saying the deaf have a life without music indicates that you've never been to a party put on by deaf people. It's not uncommon to have the music cranked up to 11.

People who received CI's after becoming deaf have reported that while they do a decent job of allowing them to understand speech the perception of music is vastly altered. People with CI's do not experience music as the hearing do, no more than those who are deaf do. If they enjoy it, likely it's not for the same reasons you do. It's not music as you know it.

We don't acknowledge the right of Christian Scientists to deny medical treatment to their children because they believe medicine to be impious.

Actually... in the US this is the case. Christian Scientists are allowed to refuse medical care on behalf of their children, sometimes up to and including death. This is being challenged more often in the courts these days, but the parents don't always lose. Likewise, Jehovah's Witnesses are allowed to refuse their children blood transfusions.

I have some real issues with those positions, needless to say. Even so, I at least try to see it from their viewpoints, even while I continue to disagree with them.

[Alyrium Denryle]

Lots of defects caused children to be left to die in the not too distant past, being a girl might still cause this in some areas. However you don't see a Blind culture or a Down Syndrome culture. Sorry, but when you're the only group doing this people are going to target you.

And that makes it right?

No, this isn't something that I've been a part of.

So you are just pulling shit out of your ass on how these groups operate? I get you.

The closest thing might be the involvement I have in my local Kink scene, but they don't go out advocating for the acceptance of Kink.

That is because the kinky are not a persecuted minority group, and a person can be kinky in private, but not in public. Being kinky is already socially acceptable (within limits), so long as one does not go to work in a gimp suit.

This in spite of Kink being a major part of people's lives in much the same way that being Gay is

No. It is not. Being a Sub is not something someone puts on the list of Top 5 Things that Describe You. Most people will list their Sex, Nationality, Religion and a few other things first. Axes of primary self identification. Gay is on the list. Deaf is on the List. Kink is not. That said, the activism groups are a bit different. Most people who are politically active do it part time. The full timers however, are the ones who write the insane press releases, and in the case of the gay community, made sure we lost the prop 8 fight in CA. They are also the envirohippies who believe in Giaia and all that...

I know that the level of discrimination is much different and it's not the best example but it's the closest thing I've been involved in and it's mostly low key.

Which is why your experiences are irrelevant. You are not in an activist community. You are in the Dark Side equivalent of a Unitarian church, where the sort of crazy you see is eccentric, not loud and angry.

But imagine if you were. Imagine if the people who enjoy being suspended by their naked flesh from ceiling hooks were the ones who got all the air time.

That's stupid though, if you don't implant a deaf child young then the device won't improve their quality of life. This isn't some public school thing where they go out and try to force the deaf out of kids, they're trying to help. Encouraging schools to teach kids with CI's ASL is good, fighting CI's in infants, is stupid.

Remember though, it is very easy to under-estimate the value of a sense you dont have. At the same time, it is equally easy to over-estimate the impact on quality of life of the lack of a sense you do have.

Its like... an argument I often hear regarding abortion. Pro-lifers will ask me how I would feel if a beloved sibling were aborted. They assume that I will think of everything good that has happened between myself and said sibling, and I would say "OK. Maybe you are right". When in fact, my mom DID abort a fetus between the birth of my older brother and myself. I never knew the difference. Was there potential for awesome experiences? Sure. In the same way that a deaf person is missing out on the compositions of Guillaume de Machaut. However, they cannot comprehend what it is like to listen to 14th century polyphonic verse. At the same time, you are over-estimating the impact it has on quality of life, because you are viewing it from the opposite perspective. What it would be like to be unable to enjoy it. I know this, because the only way a human brain has of simulating the lack of a sense inside their frontal lobe, is to imagine its loss. You have no memory of being deaf, and are trying to project what it would be like... but all your memories of hearing get in the way. You literally have no way of accurately modeling what it is like.

For a child born deaf, they miss out on things, but they gain in other ways. They gain access to a rich subculture, and still experience a world in every way as full and rich as our own.

Ideally, it would be up to the person to make the choice for themselves. But this case is complicated by the time sensitive nature of brain development. The problem is, no one has the right to make it FOR that person either. Parents dont own their kids. They keep their children in trust. Major procedures that drastically affect (and I am leaving whether this is good or bad completely neutral. Not every fork in the road has a bad path, afterall) the course of someone's life should not be up to parents except in life or death situations (and there are limits even then. See Jehovah's Witnesses). To complicate matters even further, if you take it out of the hands of parents and put it in the hands of doctors... well this gets tricky (and terrifying) too. Doctors cant think their way outside their profession in many cases(not to disparage doctors, but they really are just Anatomy technicians unless they do research), and they have a long history of doing terrible things without the knowledge or consent of patients or parents in order to make children more "normal", because their training conditions them in many cases to think that any sort of wierdness is a disease that must be purged.

In many cases, this leads to absolutely horrific side effects down the line. Like doctors who "fix" infants with intersex conditions by performing penectomy and vagioplasty without the knowledge or consent of parents (and yes, they get away with it, or did until recently). This can permanently fuck up a child, not just in terms of their love life, but psychologically.

Sometimes, attempts to help really can be more damaging than helpful. I dont know whether this is one of those cases, but it is an idea worth considering. Especially when it is a stem cell treatment in a developing brain, where stem cells infusions have been known to cause brain tumors. Unless we are talking about something life saving, I am not sure even a clinical trial is worth the theraputic benefit, when compared to the risks.

EDIT: Broomstick dealt with the risks of Cochlear Implants, and how them + the misguided efforts of the hearing can leave a child with one non-communicative.

So, I would recommend you fully consider your position, instead of decrying opposition to this trial by deaf people it as stupid and making yourself look like a bigoted asshole.

Identify with who you are and not a single defining trait about yourself and you don't get this situation.

And a big part of who they are is wrapped up in that language and culture. It is to the point that their inner monologue is in sign language. Remember, many of these people have never processed sound, so they dont even think in verbal english.

It'd would be like you bitching about total acceptance of gays because it ruins your special culture. It makes no sense.

More like bitching about a neuro-surgical treatment for infant gays.

That worries me too, being gay isn't a disability and thus not something to wipe out. It's not even close to being deaf.

Both parts of those are arguable. I cannot have my own children... well I could, if I wanted to find workarounds like a surrogate. I WILL find it more difficult to find housing and employment (outright discrimination need never even be involved, and even if it were, it is nect to impossible to prove), I am subject to persecution including physical violence (and have been assaulted. Repeatedly). This negatively impacts my quality of life, even if it is not a technical disability.

Deafness by contrast, well... They dont get to experience mozart, at least not the same way we do. Ok. But they dont perceive the difference unless they acquire deafness later in life. They wont experience the calming voice of a loved one, but it is not as if hand gestures cannot express the same things. I have seen it. There are ways of modulating the signs to express emotions, and they are processed the same way as verbal language in the brain (but bypassing the temporal lobe for the occipital). For other things, they find workarounds, and those workarounds do not impair their functionality at all, and they come naturally as a part of growing up. Sure there are some jobs they cannot get, but guess what? Everyone has jobs they cannot get by accident of birth for any number of reasons. Etc.

Those might be the arguments they make. I have no point of reference from which to evaluate it. At the very least, I think inborn deafness can fairly be said to be less a disability than acquired deafness.

I don't hate on all deaf people, or even all Deaf people. However it's pretty clear that they see their impairment as something special to build their lives around.

Everyone builds their life around a few key features of themselves. I build my life around my love of nature and reason. Others do things differently, and deafness is VERY significant when you think about all of the facets of one's life that it affects. It makes sense that it, and the culture surrounding it, would become very important for someone's life.

No, it's a disability anyway. It means you can't preform jobs or enjoy things that the majority of people take for granted.

There are a lot of jobs closed to you by accident of birth. If you are too big, you cannot be a racing jockey or fighter pilot, same with poor vision and any number of things. Would you like a list including not being able to work at hooters if you are male or a somewhat homely woman? How is deafness any different?

Additionally, sure, they cannot enjoy things you take for granted. However, they can do things you cannot. The parts of the temporal lobe that process sound dont just become empty real estate. They get re-wired to do other shit, like processing sight and touch. Hell, it is the reason many blind people can echolocate. Their visual cortex gets re-wired to process sound and touch. It is why deaf people can feel music instead of hear it. Tactile gets dialed to 12 in some cases.

There is absolutely no way to compare the two conditions on the ability to experience things. None. If the dead had a higher rate of depression I might agree with you, but they dont. They have different experiences, but those experiences cannot by any objective definition be considered inferior.

That said, there are certain.. dangers... like traffic, where hearing would help.

I'm just saying it's not all that altruistic because every group would rather you know their language.

Consider the numbers. There are 500k deaf people in the US. By contrast, there are 15-ish million gay people. There are enough gay people in the US to throw public parades in every major city, have our own bars, and have our own little districts of cities. There are not enough deaf people to do that. There are deaf churches, athletic leagues etc (you know, potlucks and things). There just are not enough deaf people, and hey are too distributed, for them to do big ticket outreach events like the gays, jews, muslims etc can. Hell, it is not uncommon when deaf people are introduced to eachother (as far as have read), for them to go over other deaf people they know, and find common friends rather quickly. It is that small. Instead, they promote their language so that people can join them in the smaller gatherings they do (hearing friends and such) and I am sure that if you talk to a Deaf person and think to ask, they will recommend some good art and literature made by deaf people. There used to be fixed location deaf social clubs, but those collapsed in the 1970s due to technological advances making them unnecessary.

So you would be fine with somebody going up to you and saying, "Hey, gay dude, can I borrow a quarter for the bus?" If somebody called me a hearie they would have started off on the wrong foot.

No, I would not be. But I dont walk up to someone and say "hey straight person". I use their name if I know it, and if I dont, I find out. If I am writing an open letter to straight people, yes, I will address it "Dear Straight People of the United States, I have a favor to ask. Please reign in the bigoted section of your population. I really do not appreciate this chipped tooth. Thanks."

And I do not object if, in a speech, someone like Obama says "and to gay and lesbian americans everywhere..."

I'm sorry, but taking the position that hearing is superior to not hearing isn't nearly the same. In fact it's the only logical stance to take. Thus Audist is either a meaningless term or one meant to single people out.

From YOUR set of premises. See above for arguments regarding them. If you start from the premise that deafness is simply a difference that does not necessarily imply disability, then there is no difference between you, and a racist.

From here, I will address arguments not already effectively answered above. If I dont get to you, it means you can find the addressing of your argument somewhere above

anyone trying to prevent a "born deaf" infant from being given the ability to hear is essentially choosing a life without music for them. I find that to be monstrous and completely indefensible

A person born deaf does not miss music. And you do not miss an increase in peripheral vision arising from being born deaf and re-wiring the brain. If it bothered them, they would report increased disatisfaction with their lives in studies. They dont. A person can be perfectly happy without music if they never knew it. It would be devastating for a hearing person to lose it, just like the loss of a sibling would be traumatizing. However, if you never have either, there is nothing to miss.

That makes a difference, or should. Because there are practically no people who have hearing who would want to lose it. The only people who view the loss of hearing as a neutral or positive thing are the ones who don't have it- which to me, smacks of sour grapes.

See above.

I can understand this- what upsets me is the attempt to deny choice: to impose the condition of deafness on children who would otherwise be born without it. The fact that the choice, for those who have it, is so consistently made in the direction of "I want to hear" makes the denial of the choice all the more profound.

The issue is of course that absolutely no one has the right to make the choice except the person it most affects, and they are not competent to make it during the window where it matters.

Most people who have the choice and are competent to make it, are those who have had the ability to hear and who lose it. Of course they will want it back. However, it is not sour grapes to not miss, and to perhaps undervalue, something you have never had.

By trying to enforce the status quo and stop deaf infants from being given the ability to hear, deaf-culture advocates are trying to do exactly this- to make choice impossible because they fear what these people will choose for themselves.

See above regarding the issues with choice, particularly in infants. Were this not a study using infants, and all that entails, I think you would see a lot less opposition.

But if I take a step back, I look at sign language and see a workaround- something people invented to make up for a lack. Sign language exists because there is a need for it, not because it would be a good thing for it to exist even if there was no need- it's an instrumental good, not a good in itself.

I am torn on this one. I am partially playing devils advocate (someone has to) and partially thinking aloud with my own ethical ruminations on this whole issue.

I would respond, with the reservation that I am not sure it applies in this particular case, that an instrumental good can become a good in itself. All languages, in the end, arose out of a need for humans to communicate. They are all instrumental goods in that sense. Over time though, literary and dramatic works get written in them, cultures develop around their use, and they become integral in people's lives.

The desire to ensure that more children are born deaf strikes me as very similar to the desire to ensure that more children are born blind, or without the use of one of their arms. None of those seem to me like something that deserves a respected place in our bioethics policies.

Look at it from their perspective. They want to have children who are like them, who grow up speaking their language, and who are raised inside their culture. Every parent, I think, wants this.

Do you not see how this is counterproductive? You dislike the idea of risking a child's health to make sure they have the ability to hear. Why, then, are you opposed to developing less risky ways of providing that ability?

Injections of stem cells is not the way to go if you want less medical risk...

Very well, it comes across as stupid. Might I ask you how you think the capitalization of the word "Deaf," and the transformation of deafness into something along the lines of an ethnic minority, comes across to everyone else?

Deaf with a capital D is the the accepted term...

Why in Heaven's name are they trying to prevent a study that's treating people not born deaf?

I imagine they view it as a slippery slope. Again, I am not actually decided on where my position is. Still ruminating, while projecting my line of thinking to where I think Deaf Culture advocates may be coming from.

That, and S.L.Acker is being a dick, and I enjoy pissing in his cheerios.

No, I don't, a small minority of Deaf people do. I have expressed concern about this particular experiment because of reasons already noted about infant experimentation and the safety of this procedure (unknown at this time).

This. This right Here. This is the primary reason why I personally would probably put my foot down and say No, were I on the FDA panel this came to for approval. The Benefit threshold for infant experimentation must be very very high, because they have next to no immune system, cannot consent on their own etc.

Also, the vast majority of Deaf people weren't born deaf, either. Many lose their hearing to disease or trauma, and these are the same people who don't see themselves as having a major disability. You shouldn't make huge sweeping claims about how Deaf people think or feel without knowing. Would they rather have their hearing back? Maybe. Sometimes. But they wouldn't risk their lives for it.

Aside from the most militant Deaf, that is the real concern of Deaf people in this matter – that the medical world will come to rely so strongly on things like CI's that children who aren't helped by them will not receive appropriate care and education. They fear this because they themselves have either experienced it, or seen it happen to others. This is not an irrational or baseless fear on their part but a fear born of past experience.

--plugs more data into The Great Machine--

All too often decisions about what works best for the handicapped are made by able-bodied, fully-sensed people who just do not know what it is like to exist with a handicap, who don't know what really works and what doesn't.

Which is the very reason I take their concerns seriously. It helps that I have been on the receiving end of people with more power than me, deciding what was "best", but who have no fucking clue what my life was actually like. For different reasons of course, but I have been there.

On the flip side, there are anecdotes both sad and amusing of deaf parents, seeking to do what's best for their hearing children, doing things like playing records so their young children are exposed to speech but playing them at the wrong speed, or playing videotapes with the sound on “mute” or too loud. Deaf people can be incredibly noisy, I could see where a hearing children in a family of deaf people might actually be at a disadvantage at times.

Hehe. I have stories. A friend of mine is a hearing child of deaf parents, and his mom LOVED the vibration of radio static on the way to school in the morning...

Deaf people know this has happened to people, that it is STILL happening to some people. There is a real concern that some infants will get CI's and too much time will be spent trying to make the CI work that by the time someone realizes that no, it's not working as well as hoped and this kid needs to be treated as a deaf kid it will be too late, the language window will close, and the child will be forever unable to communicate meaningfully with other human beings.

And we have an argument I had not considered, at least not directly. One I really should have, because I know of cases like this too.

That's one reason why Deaf people push so damn hard for Sign – because they know that the kids HAVE TO learn a language, ANY language, by a certain point or they will never, ever have a language at all. Sign is a fully developed human language. It's actually a group of languages, as there are many sign languages, but they are legitimate, fully realized languages

Hell, some of them arose spontaneously in deaf schools. The little kids invented their own language.

Not to mention it's a real slap in the face to all the deaf people who DO manage to learn to speak and lip read.

My bad, I did forget lip reading and speaking. Though as far as community scale outreach efforts are concerned, promotion of sign language seems to be the only large scale thing a community of only 500k US citizens can manage. The rest is more local and not amenable to statistics.

[Zaune]

Something else to consider. People with a disability which they have successfully adapted to and compensated for to the point where it's no more than a minor inconvenience overall, and which perhaps has certain compensations, tend not to appreciate it when other people act like they're disabled. If there was a plausible treatment offered for Asperger's Syndrome (or whatever the current medical term is) I believe I'd react equally badly.

[hongi]

I got involved in a fairly extensive debate on SB about the Deaf. Suffice to say I side with Terralthra, Alyrium and Broomstick. Just for background, I'm not deaf. I am hearing impaired and have hearing aids (but I don't use them), but that shouldn't really be too important. I'm interested in sign linguistics and Australian Sign Language (Auslan).

Deaf people can be incredibly noisy

Damn true. It's probably one of the most surprising myths that hearing people have about deaf people.

No, but I think you are ignorant of them and their concerns.

That pretty much sums it up. If only people actually talked to the deaf and Deaf community, there would be a lot less fear-mongering. The language barrier is no excuse, translators exist.

[Alyrium Denryle]

Something else to consider. People with a disability which they have successfully adapted to and compensated for to the point where it's no more than a minor inconvenience overall, and which perhaps has certain compensations, tend not to appreciate it when other people act like they're disabled. If there was a plausible treatment offered for Asperger's Syndrome (or whatever the current medical term is) I believe I'd react equally badly.

I know I would. Especially if that cure was an invasive and VERY risky procedure that is as likely as not to be ineffective, and had a not-insignificant chance of causing tumors.

The implication being

"This disability is so bad that we are going to risk giving children a lethal tumor inside their head to give them a chance at being closer to normal"

"Wait what? Um... I have that "condition" and I dont actually feel all that disabled, and you really should not be experimenting on children in such a risky way so... Fuck no!"

"How dare you wish your disability on others!?"

"FUCK YOU!"

[Broomstick]

On a somewhat related tangent, here is a somewhat related thread from elsewhere on using gene therapy to correct colorblindness. Note that the colorblind people, even those with a condition severe enough to cause them some actual limitations and difficulties, seem less than enthused. The people most enthused about gene therapy often seem to be those who aren't the ones who would receive the treatment.

Many disabilities can be compensated for to the degree they become more annoyances than real hindrances. Do you think Oscar Pistorius would prefer a new pair of his prosthetic legs, or an experimental treatment to attempt to re-grow his feet biologically? Are you going to tell a world competitor runner that his life is tragically stunted because he can't run his non-existent toes through sand on the beach?

As Alyrium noted, we all have limitations. Deaf people who are successful in life tend to be those who focus on what they have, and not what they lack. For that matter, when my mother lost her ability to read after a stroke - a crushing blow to a woman who owned a personal library of thousands of books, who enjoyed poetry and reading things like Chaucer in the original Middle English - she could have easily spent the rest of her days weeping in despair but she didn't, instead she developed an interest in art books and built a video library of excellent performances of some of the the stories she used to enjoy reading. The deaf woman I used to work for used to be an amateur musician but instead of dwelling on the loss of music she focused her passions on something else. Sure, she missed it at times, but there are so many other things in the world to hold one's interest, some of which she never have pursued if she hadn't lost her hearing. There's more than one way to experience the world, and often one is not better than the other just different.

Being deaf shouldn't be tragic. Yes, it's a loss, a difference, but it's not a tragedy unless other people make it so. Even among adults who go deaf and could use a CI not all of them opt for one. Interventions for deafness should be low risk because, frankly, it's not worth losing your life over an attempt to hear.

[Simon_Jester]

Again, rejecting cochlear implants is an extreme minority position. It didn't used to be so, but it is now. this has any more traction, a) I'd be surprised, and b) it's because it's testing on infants. And this isn't a safe treatment. How do I know? Because the article says this experiment is primarily focused on ascertaining whether the treatment is safe.

All right, this is more understandable- but there's a catch. Without eventually testing the treatment, we can never make it safe. Every medical treatment had to be tried on human beings sooner or later, and quite a few of them didn't work. But if we oppose testing medical treatments on infants, when that's the only way to make the treatment work at all, then in practice we oppose the treatment.

But if I take a step back, I look at sign language and see a workaround- something people invented to make up for a lack. Sign language exists because there is a need for it, not because it would be a good thing for it to exist even if there was no need- it's an instrumental good, not a good in itself.

As opposed to language itself?

Actually, no. All language is an instrumental good; it exists for us, not we for it. It's absurd to oppose an advance in medicine because it might make a language obsolete.

I can understand the concern, but I have virtually no sympathy for it when it starts getting in the way of medical science.

My point is that this [the 5% of deaf children born to deaf parents- SJ] is a vanishingly small number, hardly worthy of basing your argument upon.

Since my argument is "children born deaf should get the opportunity to be treated to give them hearing," I don't think it's a bad place to base part of my argument on. The other part is that I don't think deaf-culture activists have a right to stop other people from trying to give their own children a sense of hearing.

Somehow, it seems that the desire to prove that deaf people are as good as people who can hear has mutated into the desire to perpetuate and promote deafness. It's hard to exaggerate how perverse this seems to any person with the sense of hearing, except perhaps by analogy. Which is why I keep comparing this situation to blindness.

Except, as noted many times, this is a small (admittedly very vocal) minority among the Deaf.

I disagree with that minority for what they say. That doesn't mean I disagree with anyone else who says something else.

I will say, though, that this is a problem for most minority movements that need activists to protect their interests. If you don't have a mechanism by which moderates in the movement can tell the vocal minority "you're being idiotic and spiteful, shut up," then the movement gets saddled with a bunch of spiteful idiots. If you let the spiteful idiots speak for you, then you come across as a spiteful idiot, even if you aren't. It's basic public relations.

For example, this is why I told S.L.Acker he was being a spiteful idiot, and continue to think so- even if some of our conclusions are similar, our thought processes are very different. Personally, I think he'll be all right once he gets his head screwed on straight again, but that may just be me being optimistic.

Do you not see how this is counterproductive? You dislike the idea of risking a child's health to make sure they have the ability to hear. Why, then, are you opposed to developing less risky ways of providing that ability?

If it were less risk, I wouldn't have any concerns.

I don't think we can know whether the treatment is less risky (or more effective) until it's been tested. Stem cell research is difficult and often species-specific; you can't know it works on humans until you've tried. No matter how good or bad the treatment method is, we will never get better treatments without unknown risks in the testing phase.

I wish there were a way around that, but I don't think there is.

We don't acknowledge the right of Christian Scientists to deny medical treatment to their children because they believe medicine to be impious. Why would we acknowledge the right of the deaf to deny medical treatment to someone else's children because they have something to prove about how good life can be while deaf?

You sure you've been in the US? Many states have laws carving out religious exemptions to vaccinations and blood transfusions, even liberal states, e.g. California.

These laws are under heavy fire, are far from universal, but I'm sorry, you're right, they're on the books.

That said- do you think Christian scientists have the right to deny medical treatment to their children because they think medicine to be impious? If not, why would you acknowledge the right of anyone to deny medical treatment to someone else's children?

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Sometimes, attempts to help really can be more damaging than helpful. I dont know whether this is one of those cases, but it is an idea worth considering. Especially when it is a stem cell treatment in a developing brain, where stem cells infusions have been known to cause brain tumors. Unless we are talking about something life saving, I am not sure even a clinical trial is worth the theraputic benefit, when compared to the risks.

Now this is a conversation worth having- especially since you're probably in a good position to judge.

I can understand this- what upsets me is the attempt to deny choice: to impose the condition of deafness on children who would otherwise be born without it. The fact that the choice, for those who have it, is so consistently made in the direction of "I want to hear" makes the denial of the choice all the more profound.

The issue is of course that absolutely no one has the right to make the choice except the person it most affects, and they are not competent to make it during the window where it matters.

Most people who have the choice and are competent to make it, are those who have had the ability to hear and who lose it. Of course they will want it back. However, it is not sour grapes to not miss, and to perhaps undervalue, something you have never had.

Hmm. Point. "Sour grapes" was an unfair way to say it.

I think the real issue is still there, though. Small children aren't competent to decide whether or not they will have hearing- but I don't think deaf activists are competent to decide whether small children will have hearing either. Handing the decision off to the parents isn't ideal, but it has one advantage if we can't find a better arbiter: parents normally desire that their child be better off. There are exceptions, there are assholes who value their child's well-being less than whatever big ideological issue rules their life, but it beats having the decision made by default for all children by someone whose sole motive is the impact on a third party.

See above regarding the issues with choice, particularly in infants. Were this not a study using infants, and all that entails, I think you would see a lot less opposition.

If you're trying to develop a medical treatment for infants, you have to do a study using infants sooner or later. If this is all about the science of this particular study, though, then I can understand the opposition. It would be bad if this study were performed without enough prior effort to minimize the risks and test the technique on animals as far as possible.

But if I take a step back, I look at sign language and see a workaround- something people invented to make up for a lack. Sign language exists because there is a need for it, not because it would be a good thing for it to exist even if there was no need- it's an instrumental good, not a good in itself.

I am torn on this one. I am partially playing devils advocate (someone has to) and partially thinking aloud with my own ethical ruminations on this whole issue.

I would respond, with the reservation that I am not sure it applies in this particular case, that an instrumental good can become a good in itself. All languages, in the end, arose out of a need for humans to communicate. They are all instrumental goods in that sense. Over time though, literary and dramatic works get written in them, cultures develop around their use, and they become integral in people's lives.

True- but as I said, hell, maybe someone will invent telepathy and make spoken language obsolete too. This would be at best bittersweet for me, but I'm not going to try to stand athwart it if it happens (admittedly, not likely, although if we go all Singularitarian with wireless built into our brains, the effect would be similar, and there's at least a slim chance of that in my lifetime).

The desire to ensure that more children are born deaf strikes me as very similar to the desire to ensure that more children are born blind, or without the use of one of their arms. None of those seem to me like something that deserves a respected place in our bioethics policies.

Look at it from their perspective. They want to have children who are like them, who grow up speaking their language, and who are raised inside their culture. Every parent, I think, wants this.

I'm not unsympathetic- but the last time I myself thought of that desire, I was thinking of social conservatives who vote for Newt Gingrich. They do so not because Gingrich has any morals, but because they don't fear that he will undermine their morals, or the morals of their neighbors.

And the way they define "morals" disgusts me (although at least I agree with them if they think that Newt Gingrich doesn't have any).

So I don't acknowledge an unlimited right of parents to make sure that children are born "like them." The line has to be drawn at the child's well-being and happiness; you're better qualified to illustrate why than I am.

Do you not see how this is counterproductive? You dislike the idea of risking a child's health to make sure they have the ability to hear. Why, then, are you opposed to developing less risky ways of providing that ability?

Injections of stem cells is not the way to go if you want less medical risk...

Again, I don't think you can be confident of inventing a safe procedure without some risky tests.

Why in Heaven's name are they trying to prevent a study that's treating people not born deaf?

I imagine they view it as a slippery slope. Again, I am not actually decided on where my position is. Still ruminating, while projecting my line of thinking to where I think Deaf Culture advocates may be coming from.

That, and S.L.Acker is being a dick, and I enjoy pissing in his cheerios.

Go for it. I'd be sad if he got banned because I'm participating in an ongoing RPG with him and it's fun, but no one should join this forum without the ritual hazing of having been bounced out of an untenable position at least once.

Hehe. I have stories. A friend of mine is a hearing child of deaf parents, and his mom LOVED the vibration of radio static on the way to school in the morning...

I wonder if the hearing children of deaf parents would have any insight into what it might be like if there were telepaths, surrounded by people who don't have the sense and aren't even aware of it.

My own mental of 'hearing among the deaf' comes from a passage by Doc Smith which I could quote at length, but which is not germane to the thread. Maybe I'll PM you. Suffice to say that it left me permanently sympathetic.

[Cesario]

I've never once heard a Deaf person make any kind of comment about language use like that, even in jest. Why would they, given that they have their own language, you idiot?

The point is not that they want their children to be deaf. My fiancée's parents didn't puncture her eardrums so she'd be deaf too, so the idea that they "strive" for deaf children is monumentally flawed. The issue is that there is a culture and community built around the language they've developed. Treatments for deafness which target infants remove children from that community before they're even aware it exists. If this were any other language community, I doubt there'd be a person here arguing that infants should be removed from a family who speaks an extreme minority language (Walloon, e.g.) and taught English instead because it'll be better for them in the long run.

Wait, wait, wait.

Who's saying that children should be taken away from their families?

I thought this was about giving those children a sense of hearing, then returning them to their families so that they could grow up like your fiance, who's parents didn't deliberately cripple her.