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Deaf culture has taken an interesting twist.
April 3, 2002 8:02 AM   Subscribe

Deaf culture has taken an interesting twist. Never mind the issue of lesbian's with kids, which is too emotionally charged anyway. What do we make of people that intend to bring about birth defects?
the women cannot be sure whether Gauvin is -- as they hope -- deaf.
posted by dwivian (124 comments total)

 
Quote from one of the parents: "I would say that we wanted to increase our chances of having a baby who is deaf." That's amazing -- I can't believe there are some people so wedded to their deafness that they would intentionally try for a deaf child.

What if the kid turns out to be one of the deaf people who believes it's a disability instead of a cultural identity? It can't be terribly therapeutic for your parents to one day tell you, "Honey, you're deaf because we sought ought a deaf sperm donor!"
posted by rcade at 8:24 AM on April 3, 2002


Society never ceases to amaze me. Reading about this kind of stuff in any fasion or form always freaks me about living in a future Orwelian society.
posted by jmd82 at 8:38 AM on April 3, 2002


Not sure about the connection to an Orwellian society -- can you explain?
posted by argybarg at 8:43 AM on April 3, 2002


This article doesn't surprise me much - it seems a very normal response that in a family of deaf parents and a deaf sibling, they would hope that the next child is deaf as well.

Is it any different from black adoptive parents seeking a black child to adopt? They feel that their life experiences make them better qualified to raise a black child, culturally and spiritually. These deaf parents feel the same way - I would imagine that they might also feel that their deafness could possibly hinder a hearing child whereas a deaf child would benefit greatly from it.

I was raised by a single deaf parent. I have excellent hearing, and am musically inclined. The distance between my mother and I as a result of her deafness comes from a few minor sources, but is there all the same. I think she would have been a better parent to a deaf child, as a deaf child would not have been unnerved by their parent's silence. My mother had hearing aids, but had a tendency to take them off when she got home. When they were off, she couldn't hear half of what I was saying to her and rarely knew she was missing anything. I often felt very ignored, and it wasn't until I was much older that I realised the reasons for it and could deal with it.

On the flipside, she did make every attempt to encourage my musical talents by arranging lessons and whatnot, since she was afraid that her deficit musically might hinder my prospects, and I'm very grateful for that.

So I don't know. I don't find anything odd about deaf parents wanting to raise deaf children and give them advantages that they didn't have. Many hetero deaf people are married to deaf partners, and look just as much forward to raising deaf children. Is it somehow different because they found a longtime friend who is also deaf to be their donor?
posted by annathea at 8:43 AM on April 3, 2002 [1 favorite]


When I read your intro I assumed that the parents were taking some direct action to cause deafness in an otherwise hearing child, when I read the article I see that they merely selected a deaf man as the sperm donor, which seems to be a different thing. It's a very tough call, since deafness *is* a disability (which is not to say that deaf people cannot live full and happy lives as contributing members of society) and to wilfully try and have a deaf child runs contrary to what most people view as ideal (we feel you should want to have a child as healthy and normal-functioning as possible). However, since no direct action was taken to *make* an otherwise-normal child deaf (i.e. they aren't robbing a hearing child of his hearing, they're just "selectively breeding for deafness"), it's hard for me to judge where I stand on the issue . I am troubled that the child doesn't really have a choice in the matter (or, on preview: what rcade said).

Since I don't really have a problem with people being able to select the sex or physical characteristics of a child either, I'm not really sure where it's fair to draw the line, or even if drawing a line is anyone's business in the first place. Not least because it seems likely that these parents will be better at raising a deaf child than a hearing one. Good post, tough issue (I just wish you hadn't mentioned the "lesbians with kids" angle, since that's a non-issue here and it was hard for me to avoid commenting on your comment about it).
posted by biscotti at 8:45 AM on April 3, 2002


People want gods and children who look like them, act like them.
posted by scarabic at 8:50 AM on April 3, 2002 [1 favorite]


One of the extraordinary things about a subsection of deaf people is that they have turned deaf culture into a cult. This is just another form of fanaticism, an inability to come to terms with the real world. Only if they stay within the deaf culture can they say that deafness isn't a handicap. To choose that kind of limitation for yourself is one thing, to choose it for unborn children should subject you to the same laws that protect children (or try to) from parents who do drugs on a regular basis.
posted by gordian knot at 8:51 AM on April 3, 2002


Let's come at it from this angle - many deaf men and women want deaf partners, just as some Asian women and men want to seek out other Asians or Jews or whatnot. They want a cultural connection.

These deaf men and women KNOW that their chances of raising a deaf child increase significantly when they have a deaf partner. Is this a bad thing, to want to raise a child like themselves?

I know I hope my future child is musically inclined, has red hair like I do, and is intelligent and articulate. So I tend to date men who are intelligent, articulate, and musically inclined (I let the red hair pass - it's bonus). Is this wrong? Hardly. It's instinctive, part of human nature. In this case, since an outright choice was made to find a deaf donor, there is a hue and cry - but the article briefly mentions that it's the same donor used when the first child was conceived. I'm sure that played no small factor in their decision - having children that are full siblings makes the family connection tighter.

I see nothing Orwellian in this. Like is attracted to like, and it is nothing new for people of one culture to wish to raise children in the same culture. And yes, deafness *is* a culture, as much as it is a disability.
posted by annathea at 8:52 AM on April 3, 2002


My first inclination was to say "how dare they purposefully bring a disabled child into the world." I feel that life is hard enough being "normal" but even more difficult being "different."

However, this article and the parents make some great points. Differences make our society better. Their first child appears to have a wonderful life. Being deaf isn't as difficult as it used to be. If they want to have kids and they feel they will be better parents to a deaf child, how is that any different that people who choose a blonde, tall, beautful, smart woman as the egg donor or sperm donor? No real difference.

Personally, I can't imagine trying to bring a baby into the world with a disability, but I'm not disabled and maybe it isn't as hard and awful as it seems.

This was a fabulous post. I'm going to be thinking about this for a while.
posted by aacheson at 8:53 AM on April 3, 2002


My first inclination was to say "how dare they purposefully bring a disabled child into the world." I feel that life is hard enough being "normal" but even more difficult being "different." However, this article and the parents make some great points. Differences make our society better. Their child appears to have a wonderful life. Being deaf isn't as difficult as it used to be. If they want to have kids and they feel they will be better parents to a deaf child, how is that any different that people who choose a blonde, tall, beautful, smart person as the egg donor or sperm donor? No real difference.
Personally, I can't imagine trying to bring a baby into the world with a disability, but I'm not disabled and maybe it isn't as hard and awful as it seems.
This was a fabulous post. I'm going to be thinking about this for a while.
posted by aacheson at 8:55 AM on April 3, 2002


Crap. I even refreshed before posting and it STILL double posted!
posted by aacheson at 8:56 AM on April 3, 2002


This is narcicism run amok, like naming all your kids "George" after yourself.
posted by plaino at 8:59 AM on April 3, 2002


am i the only one who thought of this book?

obscure connection, yes, but there are similar tones.
posted by grabbingsand at 9:01 AM on April 3, 2002


Good post - very thought provoking. annathea - you mentioned that you had some feelings of being ingnored and your parent would have probably been better raising a deaf child. That being said, do you wish you were deaf?

I believe these people are fully within their rights to do whatever they wish and I can understand why they would want to do this. At the same time, I personally feel that deaf people do have some disadvantages (which is not to say that deaf people cannot live full and happy lives as contributing members of society (as biscotti said)). As a parent (which I am) I want my kids to have every advantage they can. I've personally only known two deaf-since-birth people. Both hope that technology someday helps them hear. I'm not going to touch the whole lesbian parent thing ;)
posted by stormy at 9:01 AM on April 3, 2002


biscotti: I just wish you hadn't mentioned the "lesbians with kids" angle

I did that to prevent it arising -- it isn't the subject of the article, and I didn't want to devolve into some "they shouldn't even be having kids anyway" troll-fest.

My issue with the whole thing is that I don't like the desire to bring a deaf child into the world. I would say they could have adopted a deaf child, but we know the realistic possibilities of that adoption succeeding. So, to get what they wanted, they had to seek out conditions in which deafness was a probability.

That bothers me, just as parents who "try for a boy" do. I have always believed that getting a healthy child should be the primary desire of parents -- not a boy, not a hair color, not an eye color.... so, in keeping with wanting healthy, why would one aim for a defect? What happens later in life with the surly teenager hates being deaf, and knows that their deafness was intentional?
posted by dwivian at 9:07 AM on April 3, 2002


Stormy - I don't at all wish I were deaf. My mother was raised like Sharon in the article - kept out of deaf schools (which, as also pointed out in the article, were no different than schools for the mentally challenged, at least in the 60s and 70s when my mother was in school), given surgery and ultimately, hearing aids. She has, maybe, 20% hearing with her hearing aids in. It has been a huge struggle for her to be deaf, because she is very much an outsider - she knows no other deaf people, cannot sign, and as she gets older, finds it increasingly difficult to communicate with the hearing people around her (she's in her early forties, but has been steadily losing whatever hearing she had since she was twenty or so). I imagine had I been born deaf, she'd have tried to raise me much differently, depending on the degree of my deafness. Since she had some hearing as a child, she was basically stuck in limbo all her life, and has let her deafness become a hindrance by her willful ignorance of it. That is her choice, and how she wants her life to be.

That said, I wonder if being raised by a deaf parent gives me insights that some of you don't have - I didn't think so when I first posted, but now I wonder. My mother is deaf. She lives no differently than her hearing siblings. She and I have difficulty communicating, but not in the physical sense. We're just pretty distant. I only recently have begun to realise that the silence in my household and my mother's seeming refusal to speak to me at all was related to her inability to hear and the blocks she created because of it. For example - she spoke to me very little unless she was disciplining. Now that I'm older, I know it was because she was terrified of me picking up her "accent" and being forced into speech therapy, which she hated as a child. A loving gesture, in a contorted sort of way, but it took a long time for me to see it.

At any rate, this is all moot - knowing what I know of deafness as a disability, I can see why it has become more culture than handicap. Deaf people aren't prohibited from doing many things because of their handicap - marry, hold office, create art, raise a family. Blind people are more affected by their handicap than that. Deaf people can drive, travel without a companion, even communicate outside of sign language via lip-reading or written communication. It is not the kind of handicap that means a lifetime of hardship - not in this day and age. However, it IS the kind of handicap that will bring people who share it together - free and easy communication with people like you, who understand the pitfalls and triumphs that you are experiencing! How is that any different than us seeking out cliques in high school? How is that different from us marrying the guy we met in drama club, because our lives were similar and we shared the same interests?
posted by annathea at 9:16 AM on April 3, 2002 [1 favorite]


They should name it ^_^
Of course there isn't much point in calling it anything, not like it'll notice.
This isn't fanaticism, really. I'm sure not ever hearing anything changes your perspective - and of course parents need to feel good about themselves to have children (most often by lying to themselves), so this is just a really odd...but natural impulse they're having.
Think about it though - they'd be able to raise a deaf kid better than their parents could. Raising a normal kid would be traumatic for the kid - in a way, having deaf parents would make the kid more normal, he'd just be a really well adjusted deaf kid.
(Just don't tell him you made him that way..THAT could be ugly)

Shakin' like a bowl of soup now.
posted by Settle at 9:24 AM on April 3, 2002


What an awful thing to wish for in a child. The idea of being happy that your child might never experience music, or the sound of birds, is enough to make me retch. It would be the same if these parents would be happier to have a gay child than a straight one (or, if they were heterosexual parents who would be much happier to hava a straight child than a gay one). It's your child, period, and it should be a "special blessing" whatever its condition.
posted by evanizer at 9:31 AM on April 3, 2002


dwivian: I shouldn't have mentioned it, I realize now that you said it to head off that discussion.

And while I agree that the primary desire should be only for a healthy child, that's what *I* think, I don't think it's a universal truth. I don't think there's anything fundamentally wrong with "trying for a boy" (or, necessarily, "trying for a deaf child", although I'm less sure of the latter than the former). Yes, ideally all parents would gladly accept whatever child they end up with and just be happy that it's healthy, but I suspect that those parents who really have a preference could be better parents to the child they really want, and I don't see why getting the child they really want is a bad thing, it's not like they're aborting the babies that don't measure up, they're being selective before conception has even taken place. In *my* world, the child you have is the child you love, but I don't presume that what works for me is what works for everyone. And since I'd ultimately rather parents be good parents to their children regardless of how their child came to be, if that means taking chance out of the equation, so be it (I've yet to hear a convincing argument against "designer babies").
posted by biscotti at 9:34 AM on April 3, 2002


interesting article. I only have about 10% hearing in my left ear. Never had a hearing aid, spent lots of time in speech therapy when young. Spent a lot of my life missing things that happened off to my left, and a lot of time being misunderstood.

Never really thought about it much until reading that article.

My mom and my best friend were also deaf in their left ear...so it seemed sort of natural to me. Makes for complicated walking conversations, since we would have to switch back and forth depending on who was talking.

I'll agree with annathea ...How is that different from us marrying the guy we met in drama club, because our lives were similar and we shared the same interests?

I feel like i should learn ASL just in case my hearing gets worse, that would be an interesting world to join.
posted by th3ph17 at 9:46 AM on April 3, 2002


Not sure about the connection to an Orwellian society -- can you explain?
OK, right now, the parent simply wants the deaf children. Take that a step further, and they may try to have deaf children by any means necessary. Nowadays, scientists re coming up w/ techniques to prevent defective genes from being passes on to the next generation. So what i meant is that at some point, these parents may wish to have the embryos (or whatever is needed) to be genetically altered to ensure that the child is blind. It reminds of the "The Giver" I read a while back where none of the people, save 1 or 2, could see color.
*note* Yes, i know this is taking the post to an extreme (or even off topic), but i tend to do that when it comes to things like this.
posted by jmd82 at 9:50 AM on April 3, 2002


wow. excellent post. and annathea, great points. thanks very much!
posted by dobbs at 9:55 AM on April 3, 2002


By the way....online chat with the article author this past Monday is available here.

intentionally try for a deaf child

Actually, the article does note that there is some genetic predisposition to deafness in both their families. While this doesn't necessarily guarantee that the child would be deaf, it certainly raises the odds. With this additional piece of info -- buried as it is deep in the article -- you get some additional perspective. It seems to me that they know that the likelihood that their child would have some hearing impairment is pretty high regardless of who the donor is. I hesitate to say if this is necessarily "Orwellian," maybe just an acknowledgement that "yeah it's likely that my child could be deaf from birth?" I dunno.

In any case...quite a thought-provoking article, and certainly gives some insight into the deaf culture (especially here in DC, home of Gallaudet University).
posted by PeteyStock at 10:02 AM on April 3, 2002


If they are deaf and have a hearing child, that child will move in a world where the women cannot fully follow.

They are hoping to inflict their own parochialism and inability to meet the majority of the world head-on on their own children. That disgusts me.

In their minds, they are no different from parents who try to have a girl. After all, girls can be discriminated against. Same with deaf people.

Girls are not defined by a defect.

She grew up feeling that her sister was normal and that she was flawed [She is flawed, and trying to keep her children flawed in the same way.], a feeling, she says, exacerbated by her father, who pushed her to speak. She knows he meant well, and Sharon functioned so ably, it's easy to see why his expectations for her were high. But those standards filled her with a desire to meet them and a chronic sense of falling short. "Once when I was 11 or 12, my family went to a restaurant to eat, and I wanted to have milk to drink, and I was trying to tell the waitress and she couldn't understand me. I think I tried maybe two or three times, and she kept looking at me like I was speaking Chinese. I looked at my father like: 'Help me out here.' And he was: 'Go ahead. Say it again.' "

Life is tough, and obviously much tougher when your deaf. Her father pushed her to maximize her ability to communicate. He did the right thing. Not the easy thing, not the cushy thing, but the right thing. He fought the fight she is running from.

So while life without hearing is tough, I guess inflicting it on your children does make it easier for you.

It was a positive thing to be deaf at Gallaudet.

Exclusionary thinking at it finest.

(some kids with deafness are also born with other disorders, so the range of abilities in a deaf classroom is very broad)

So these parents are knowingly increasing the risk of additional defects, specifically including mental defects. That's nice.

For Sharon and Candy, one of the great advantages of having a deaf child is that it gives them a built-in social life.

Selfishness in the extreme.

So advantageous is MSD, in fact, that one of the things Candy and Sharon think about is how much more a hearing child would cost. If the baby is hearing, they'll have to pay for day care. For preschool. Even, if they find they don't agree with the teaching philosophy of the public schools, for private school. "It's awful to think that, but it'll be more expensive!" Sharon acknowledges.

Did I mention selfishness and parochialism?

whatever team he ends up on.

Just as divisive and disgusting as when applied to varying sexualities.

Hearing parents would do anything -- anything -- to nudge a child into the hearing world. Anything -- anything -- to make that child like them.

Completely irresponsible. I am shocked that this survived editing at the Post. A 100% blanket assumption not only of what the entire hearing world would do, but what it's sole motivation must be, for no apparent purpose other than legitamizing the narrow-minded desires of these parents. Flabbergasting.

anathema - it's not about deaf people wanting to raise deaf children, it's about deaf people wanting to create deaf children. Big, enourmous difference.

having children that are full siblings makes the family connection tighter.

They tried to avoid that by having the other partner bear the second child.
posted by NortonDC at 10:09 AM on April 3, 2002


[can of worms] I find this less reprehensible than having a child for the purpose of being a tissue donor match for its older sibling or parent.[/can of worms]
posted by plaino at 10:20 AM on April 3, 2002


"Of Silence and Slow Time" by Karawynn Long, a short story about a deaf woman who intentionally tries to have a deaf baby, appears in the anthology Full Spectrum 5. Life imitates science fiction, again.
posted by kindall at 10:27 AM on April 3, 2002


For me, the only question is what the child would want if honestly given the choice (and note that that is very different from asking an already deaf person whether he or she would choose to be deaf or to have hearing). I think anyone who is honest with him- or herself would agree that the child would choose to have all five senses.
posted by pardonyou? at 10:33 AM on April 3, 2002


I'm not going to say that these women do not have the right to select their sperm donor on the basis of desirable (to them) traits he may have, such as deafness. I also believe that children with disabilities have the right to an education, the same as any child born without disabilities.

But they purposefully selected for deafness, and guess who pays for their child(ren)'s day care and special education needs? The average taxpayer. This article paints them as more concerned with the potential cost to them of having a hearing child. "Financial advantages," my foot.

Note that they're not interested in early intervention with hearing aids - and read this article on the costs and benefits of early intervention.

This source (advocate of cochlear implants, so it is biased) states that "Deafness is the most costly single disability in terms of special education costs, averaging $25,000 per year per child, compared to $5100 for a normal hearing child."
posted by jmdodd at 10:45 AM on April 3, 2002


Hearing parents would do anything -- anything -- to nudge a child into the hearing world. Anything -- anything -- to make that child like them.

Completely irresponsible. I am shocked that this survived editing at the Post. ...

It looks to me like that was a paraphrase of Weiss's comments, if you take it in context of the entire paragraph.
posted by espada at 10:46 AM on April 3, 2002


I think I have to agree with nortondc and pardonyou here, choice v/s choosing and creating. They have made the choice for the child, and that is inappropriate in this case. The consequences of the child finding out that they aimed to make him deaf are staggering, at least to me, and he will. (find out, that is)

anathema, that is how it differs from you choosing to marry someone with similar interests etc.
posted by bittennails at 10:52 AM on April 3, 2002


I love music. I like the sounds, the sonic textures, the emotions that are communicated, the performance. I think it goes beyond a cultural thing, though most of the music I like is some part of American or Western culture. But cultural or not, I couldn't take the chance of witholding that from a child. I think it is too wonderful to try to take away.

But I suppose that is the choice they are making, that their child be a part of their culture, that the child be different like they are. Actually, just the opposite, not that the child be different but that he fits in with their family.

It seems much of the motivation for this was the way they were brought up, the difficulties they had. But some of what they describe is common to many children growing up, not just the deaf. I don't want to minimize their experiences, but lots of kids feel alienated and different for various reasons.

Norton hits some of my objections, the selfish comments about a hearing child costing more and the comparison to gender being standout issues. In the end though, I lean towards parental rights rather than government or community intervention so I'm happy to let them try to have a deaf child if that is what they feel is best for their family.
posted by mutagen at 10:53 AM on April 3, 2002


Norton -

1) I am not anathema.

2) They are not increasing their child's chance of other disorders by specifically using a deaf donor. Children who are born mentally retarded or autistic or who have any other number of disorders are occasionally deaf as well, and end up in deaf schools. Deafness does not mean a greater risk of other defects.

3) It is not at all selfish for them to realise that their first daughter's deafness opened up their social life. They didn't know it would happen. When it did, it was a delightful side effect, the realisation that they had broadened their own personal community through interaction with Jehanne's deaf playmates and their parents - most of whom are deaf, but some are not.

4) I see no difference in their wanting to raise a deaf child or give birth to a deaf child. They are not candidates for adopting a deaf child - next best thing is to hope that their next child is deaf.

5) By having Candace give birth to the second child, they STILL would have been pursuing the same goal of having the family unit be tighter - a child by each woman, loved and raised by both women. That it couldn't happen doesn't mean that the appeal of having both their children be full siblings didn't occur to them or factor in their decision to use the same donor since Sharon was going to be giving birth to the second child as well. "Well, if we both can't be natural parents to our children, let's give our children the bond of having the same two parents." It's all speculation, however - they may not have cared. I don't know.

Norton, you do yourself a disservice by making such a reactionary post. You are capable of thinking more clearly than your post would indicate. There is nothing selfish in Sharon's realisation that having a hearing child would cost more - all it is is an acknowledgement. They did nothing extraordinary to ensure their child would be deaf, nothing using sci-fi technology, simply selective breeding which EVERYONE PRACTICES (you probably do not date men/women you find ugly, for example). And they prepared for the possibility that the child might be hearing, and gave every indication even through the bias of the reporting that they would love whatever child they had - the point was to enlarge their family, not enlarge the deaf community. If that had been their goal, they'd have gone to extremes to get what they want. As it stands, they went to an old friend who donated for their first child to get the sperm for their second - many lesbian couples, hearing or not, do this very thing.

pardonyou - your logic is off a touch. If the only question is what the child would want if given a choice, then you can't speculate as to what the child would want - that's just as bad as assuming the child would want to be deaf because it has deaf parents.
posted by annathea at 10:53 AM on April 3, 2002


NortonDC - If this was a heterosexual couple do you think they want to "create" a deaf child any less? Are you saying that had the sperm donor and mother traditionally conceived this child it would have been different? Less selfish? Less deliberate?

I think the discussion in this earlier thread shows that Deaf culture/community has incredibly strong feelings about their rights to be deaf, that as hearing, maybe we can't understand. It was a 50/50 chance that Gauvin was going to be deaf, so I don't feel like we're talking the same thing as medically making sure it's a boy or a girl (because obviously in that instance you are going from 50% to 100%).
Great article!
posted by nramsey at 10:54 AM on April 3, 2002


NortonDC - "She grew up feeling that her sister was normal and that she was flawed [She is flawed, and trying to keep her children flawed in the same way.]"

I think an influential factor here is the confusion between "handicapped" in the sense of "having a practical disadvantage in certain areas" and "flawed" in the sense of "having less worth as a person." NortonDC, I'm assuming that you used "flawed" with the meaning that I'm assigning to "handicapped," however I suspect that many people growing up with some form of handicap may have to struggle with the feeling of being"flawed" in the sense I mention above. One consequence of this confusion may be that when the person rejects the idea that their condition makes them "flawed" they may also start rejecting the idea that it is a "handicap" and start thinking about it in terms of just being a different culture. Of course, there is a culture that many deaf people belong to, but that doesn't mean it isn't also a functional handicap. I've seem the same concept in literature from some activists for the disabled. In (rightly) rejecting discrimination and prejudice against the disabled, a few of them go so far as to state that the disability isn't really a disability except as societal discrimination makes it so. Sorry - having no legs or being deaf is a disadvantage, regardless of societal attitudes.

As far as the morality of what these women are trying for - I'm not sure. If they were gene-splicing a kid to make him deaf, I'd say that was definitely wrong. If they were just having a kid, knowing that their genetic background made it likely the kid would be deaf - I'd be okay with that. As far as seeking out a sperm donor who was deaf to increase the chances...I don't really know. I think it's riding the line, but I understand their motivation. I think the important thing is probably to just to be the best parents they can. And don't ever tell the kid you deliberately tried to increase the chances of him being deaf. That could really set off some fireworks.
posted by tdismukes at 10:57 AM on April 3, 2002 [1 favorite]


Again, I AM NOT ANATHEMA.

And people, they did not choose deafness for their child, alright? Even by stacking as many genetic odds against having a hearing child as they possibly good, their chances were no greater than 50/50 - and they knew this, and accepted it. They did not "choose" anything but to breed with another deaf person and hope that their child might be deaf. Which millions of hetero deaf parents have been doing for quite some time now, which has not occasioned comment from any of you.
posted by annathea at 10:57 AM on April 3, 2002


I'm taking the angle that a parent should want every advantage for their child. Yes, it is easier now than ever before (in America) because of the ADA. But your kid can't be an astronaut, a soldier, a cop, and will have a hard time being almost anything else. It's simply a DISADVANTAGE to be deaf, unless you're only around the deaf.

To think of astronauts working only by video...that might not be best, considering that they're probably going to be pretty busy. They might not be able to make many allowances for the kind of equipment and training necessary for a deaf person to go into space. What if some alarm comes on in one end of the shuttle, but the deaf person doesn't know because they're on the other end? A perfect illustration that we shouldn't make things harder or more complicated just to be politically correct.

Plus, notice how whenever one of these deaf women need to actually accomplish anything (doctors, tests, etc) they need to communicate with somebody who can hear. They either have to have an interpreter or read lips/fake it. Obviously the ability to communicate verbally is NECESSARY in society.

Now that I've refreshed, I also noticed something. Annathea is trying to make a distinction between

they did not choose deafness for their child

and

hope that their child might be deaf

and I don't think they are different. HOPING just means that if they could make it 100% certain, they WOULD HAVE chosen deafness.

Society tolerates people seeking others like themselves, because that's one way society progresses, by strengthening cultural ties. But plenty of people think of two deaf people getting together and having kids as unfortunate....not that they're having kids, which is a blessing, but because the kids might be deaf.
posted by taumeson at 11:08 AM on April 3, 2002


Sorry about misspelling, annathea. Yes, I understand the 50/50 chance was always in play, but to increase that...with forethought and planning just seems inappropriate, and like a quite a few have mentioned, what happens when he finds out. The article will be archived, at some point in his life he may come across it....??
posted by bittennails at 11:10 AM on April 3, 2002


Is it any different from black adoptive parents seeking a black child to adopt?

many deaf men and women want deaf partners, just as some Asian women and men want to seek out other Asians or Jews or whatnot [both annathea]

Is anyone else bothered by this casual equation of race and physical disability?

I mean... I guess a cynic could consider having dark skin to be a disability... lower pay, greater chance of being arrested, etcetera...

but I'd have to say, yeah, there's a big difference here. Unless you're arguing that the advantages of being part of "deaf culture" somehow makes up for not being able to hear.
posted by ook at 11:11 AM on April 3, 2002


Why would telling him that you deliberately selected a deaf father make him feel any worse than any other deaf child who knows they are deaf because they come from deaf parents? It has already been proven by scores of people happily ensconced in the deaf community that they would not change their deafness - not by cochlear implants or surgery or anything else that might become available. Don't you think being raised in that atmosphere would make the child predisposed toward seeing his deafness as less of a hindrance than you feel it is, something that makes him special and part of his community?
posted by annathea at 11:12 AM on April 3, 2002


annathea, I think it's your logic that's off a touch. Simply Suggesting that they just happen to hope for a deaf child, and are simply "breeding" with another deaf person is misleading. In truth, they specifically chose the sperm of another deaf person for the sole purpose of increasing their odds of having a deaf child. No matter how hard you try to contort the facts, this is not the same as two deaf people falling in love and wanting a child. And if it is the same, it would be just as wrong, regardless of sexual orientation.

And I don't think my logic was off at all. While you contend that we "can't speculate" about what a child would want, I disagree. I think it's safe to assume that any rational human being, if given the choice, would choose to have hearing.
posted by pardonyou? at 11:15 AM on April 3, 2002


Ook - not race. CULTURE. Different cultures. "They feel that their life experiences make them better qualified to raise a black child, culturally and spiritually." is the sentence I followed it up with, explaining my viewpoint accurately. Whether or not you want to acknowledge it, black people take pride in their own culture and in identifying with themselves as black, just as the deaf community does. I think it was a perfectly accurate and appropriate metaphor, and your trying to twist my words to make it seem as though I was equating race with physical disability is amusing, though irritating.
posted by annathea at 11:17 AM on April 3, 2002


But pardonyou, even previous Metafilter threads have discussed the fact that many deaf people who have the opportunity of regaining some hearing through modern technology have elected not to. Do I need to emphasise this? They chose to remain deaf. So your logic is based on the assumption that any human being would choose to have full use of all five senses - and it's simply not true. Because some people choose to stay deaf who could be otherwise.
posted by annathea at 11:20 AM on April 3, 2002


what pardonyou said, it is not the same as 2 deaf people having a child, annathea.
posted by bittennails at 11:24 AM on April 3, 2002


The purpose of comparing blackness with deafness is not to equate a race with a disability, but rather to equate one rich cultural tradition with another equally rich cultural tradition.
Many Deaf people really truly do not believe that they are "broken" or disabled in any way. It takes a while to understand, but open your minds to a different way of thinking about the world-- it's worth it.
posted by bonheur at 11:27 AM on April 3, 2002


I guess what it boils down to is that many of you discussing this seem to find selective breeding that would prevent a disability absolutely fine - in fact, CORRECT and expected, and that selectively breeding with only the hope of getting a deaf child morally wrong, whether the deaf couple breeding is in love or simply a donor-birth mother relationship. My opinion, personally, is that this couple isn't really doing anything differently than a woman who uses a white sperm donor because she herself is white, or a blind couple choosing to have children even though the risk of their children being blind is considerable. I would feel differently if they had used extreme fertilization techniques. I might feel differently if the disability were something other than deafness, even - and this hypocrisy I acknowledge and am aware of.

That's all I have to say, really.
posted by annathea at 11:28 AM on April 3, 2002 [1 favorite]


Completely irresponsible.....

NortonDC: Whoa! There's a broader context in here that's being oversimplified. If I had a child that was deaf but did have residual cpabilities in one/both ears....why should I deny him/her a hearing aid(s)? As jmdodd's link says, it's to the child's advantage at such an early developmental stage to do something like that, IMHO. (Although, personally, I would avoid the cochlear implant just on the basis of it being, I think, an overly-radical, unproven long-term (20+ years) solution). But I do agree with your point that you do need to maximize what abilites you can.

selfishness and parochialism (as referring to MSD)...

Why is this selfish/parochial? Because of the fact that this is supported by the tax dollars of ordinary Joes like me? No, I don't think it's selfish -- heck it's their tax dollars supporting it too, probably, so they better take advantage of it, I think! Besides, as the article says, even hearing parents of deaf children move closer to these schools in order to give the kids this advantage, certainly it's what I would do.

This is an extremely complex issue, I am vastly oversimplifying (obviously), but that's my initial reaction.
posted by PeteyStock at 11:36 AM on April 3, 2002


Annathea, I'm not trying to twist your words, honest: I've no bone to pick, that's just how I read your statements.

So, okay, you meant culture, not race. Mea culpa. And I readily acknowledge that a member of any culture can -- and should -- take pride in it. (I was being sarcastic with my 'some might see being black as a disability' statement; apologies if that wasn't clear.)

But I still see a really large gap between wanting your child to share your culture (be it black white or green), and wanting your child to share your culture by way of a physical disability. I don't think they're the same thing at all, or even similar.
posted by ook at 11:36 AM on April 3, 2002


Ook, as bonheur stated, many deaf people do not see themselves as flawed or consider deafness to be a disability. Which is one way that makes the actions of these parents make sense.

As a group of hearing folk, we can expound as much as we like really, but none of us can decide if this issue is right or wrong simply because we don't know what it's like. We, as hearing people, can view deafness as a disability, but if the deaf do not see it that way themselves, who are we to decide for them? I wonder myself.

And no worries on the race thing, I assumed it would provoke comment after posting, and I'm glad that you understand the intent of my comparison now.
posted by annathea at 11:42 AM on April 3, 2002


Ook, as bonheur stated, many deaf people do not see themselves as flawed or consider deafness to be a disability. Which is one way that makes the actions of these parents make sense.

As a group of hearing folk, we can expound as much as we like really, but none of us can decide if this issue is right or wrong simply because we don't know what it's like. We, as hearing people, can view deafness as a disability, but if the deaf do not see it that way themselves, who are we to decide for them? I wonder myself.

And no worries on the race thing, I assumed it would provoke comment after posting, and I'm glad that you understand the intent of my comparison now.
posted by annathea at 11:43 AM on April 3, 2002


I guess that's what it boils down to: if you believe deafness is a disability, then these people done a Bad Thing. And if you believe it isn't, then they didn't.

I admit I have a difficult time thinking of deafness as not being a disability: I mean, to be absolutely blunt, I'm able to hear, and the deaf are not able to hear, simple as that. But, in your favor, some people are able to run marathons, while I get out of breath just walking up the driveway... so from their perspective am I disabled? (Probably. But it's a looong driveway.)

Guess it's a matter of where you draw the line. Dang. And here I thought we'd be able to settle this once and for all, just like we solved that whole Palestine thing. :)
posted by ook at 11:59 AM on April 3, 2002


who are we to decide for them

I don't think anyone is doing that, the child has been born and lives. We are just debating whether the prebirth manipulation to increase the possibility/probabilty of deafness/disability is considered normal/okay. It just bothered me that someone would do this, that's all.
posted by bittennails at 12:03 PM on April 3, 2002


annathea -- hetero couples usually don't discuss having children in the context of trying for specific features in the child. Any such decisions are made well below the surface. I know that, in deciding to have our second child together, my wife and I never once mentioned that we wanted a hearing/sighted/whatever child. Nor did we say "thank <deity> this one will be white!" or "we really want a boy, so time to get out the guidebooks and twist and gyrate the right way".....

The desire to have a child like ourselves is not for one with dark hair, blue eyes, white skin, freckles (or not), or the ability to bend objects with force of mental telepa...er... forget that part.

Instead, we want a healthy child, and are doing the things to make a healthy child a greater possibility. A blind couple having a child has to consider the possibility of a blind child, and may even be somewhat more likely to be able to deal with a blind child than sighted parents, but I can't imagine them WANTING a blind child. Neither would I expect such of other families.

But, you have touched a point with the culture comment -- I do want a child that will grow up with an understanding of the Irish-diaspora culture, with an understanding of Southern Heritage (devoid of the racial unpleasantries), with a desire for civic duty and spiritual observance.... And, I can somehow see a little of how a culture that developed as a result of a handicap might seek validation as well. But, I will understand if my child has no interest in the Emerald Isle, thinks that Boston is a nice place to live, finds civic responsibility a drag and church an intellectual nightmare. I will do my best to teach otherwise, but I can understand their decision.

This child, if deaf, will never be able to say "I decide to hear".
posted by dwivian at 12:17 PM on April 3, 2002


On the matter of being a cultural issue more than a disability, I would like to hear it from deaf people that are not American nor live there if they feel the same way about it. There are countries where it's harder for a handicapped person to be able to attend to schools and colleges where teachers and classmates are prepared to deal with one's disability, my country being one of those.

Here in Brazil there's a lot to do to ease the life of people with disabilities. I know of one school in my town that has special classes for deaf students. It's a private (and expensive) school and it takes a deaf student twice the time to complete a regular studying season. We have 11 years of study from elementary school to high school and it might take them 20 years to complete high school. And they won't find colleges specially prepared to deal with their disability.

I've had a classmate in college that was blind. He's a brilliant guy (he was graded A in classes that were basically visual, such as machine architecture, which is studying diagrams, logic ports and so on or even computer graphics), he majored in computer sciences and math. This doesn't make it any easier for him to get a job. Although this line of thinking is fading away while people with disabilities give proof of their excelence on a daily basis, it is still a major difficulty that they have to overcome, aside the issues of social relationships.

I can surelly understand what those women were thinking when they've decided for the deaf donor, but I think that the cultural side of it is easy to perceive, when there are lots of aids that help them overcome their difficulties. I don't know if they'd have the same opinion if they were from another country.
posted by rexgregbr at 12:29 PM on April 3, 2002


Why would telling him that you deliberately selected a deaf father make him feel any worse than any other deaf child who knows they are deaf because they come from deaf parents? It has already been proven by scores of people happily ensconced in the deaf community that they would not change their deafness - not by cochlear implants or surgery or anything else that might become available.

That's just one group within the deaf community, though. If parents in the deaf community start self-selectively breeding deaf children, which will easily be more and more possible, there are going to be deaf children who would never have made that choice for themselves.

I can appreciate the fact that many deaf people have a shared culture and heritage that's wonderful and enriching. But I don't see how it's defensible to intentionally try to have children who cannot hear.
posted by rcade at 12:29 PM on April 3, 2002


The greatest concern I have about this issue, is the statement by the prospective parents "a hearing child would be a blessing, a deaf child, a special blessing ". If the child has hearing, I hope that the parents manage to keep their inferred "disappointment" to themselves. Much potential in humans has been thwarted when individuals carry their parent's disappointment with them through life. I can't help feeling that these parents, although they make many valid and convincing points, are indulging themselves in a puerile manner, purely to save themselves the trouble of adapting the stronghold of their disability to accomodate, the lifestyle and attitude changes a hearing child would cause them to make. Sorry folks, to me, it's selfishness and arrogance in their worst forms.
posted by Arqa at 12:31 PM on April 3, 2002


I am seriously hearing impaired. . .it's only since the advent of digital hearing aids a few years ago that I can really participate fully in my environment, and there are many activities in which wearing these aids is impractical or impossible.

I have never had to learn sign language, and have not really entered the culture of the non-hearing but still, I shudder at the sentiments expressed by these two mothers-to-be.

You can talk "other-abled" as much as you wish but I would never wish any level of disability on my kid. . .
posted by Danf at 12:34 PM on April 3, 2002


espada - It looks to me like that was a paraphrase of Weiss's comments...

That's certainly possible, but a paper half the quality of The Washington Post ought to know better than to allow that level of ambiguity of attribution. Lawsuits happen over that kind of stuff in other circumstances.

annathea - I am not anathema.

Got it.

They are not increasing their child's chance of other disorders by specifically using a deaf donor. Children who are born mentally retarded or autistic or who have any other number of disorders are occasionally deaf as well, and end up in deaf schools. Deafness does not mean a greater risk of other defects.

A cursory search on Google provides evidence in opposition to your statement. As an example, look here for several examples of deafness being associated with many other nontrivial disorders.

It is not at all selfish for them to realise that their first daughter's deafness opened up their social life. They didn't know it would happen. When it did, it was a delightful side effect, the realisation that they had broadened their own personal community through interaction with Jehanne's deaf playmates and their parents - most of whom are deaf, but some are not.

The entire article reads as an apologia for their practice of dysgenics. In that context, to say "For Sharon and Candy, one of the great advantages of having a deaf child is that it gives them a built-in social life," is not merely an observation of the past. Rather, it forms part of their selfish justification for their current path.

I see no difference in their wanting to raise a deaf child or give birth to a deaf child.

Then you are deluding yourself. One is caring for a person suffering from a major sensory defect, while the other is deliberately attempting to create a person suffering from a major sensory defect.

They are not candidates for adopting a deaf child

Says who?

next best thing is to hope that their next child is deaf.

Wow, you just used "next best thing" to describe purposefully breeding to create a person with a significant bodily defect.

There is nothing selfish in Sharon's realisation that having a hearing child would cost more - all it is is an acknowledgement.

No, it is another attempt to justify their current choices, not merely an observatioin of what already happened.

"It's awful to think that, but it'll be more expensive!"

"It'll" is the contraction of "It will," with "will" indicating the future tense. This an attempt at a defense of their selfish actions based on their projection of the future, which is much different than merely acknowledging what happened in the past.

They did nothing extraordinary to ensure their child would be deaf, nothing using sci-fi technology, simply selective breeding which EVERYONE PRACTICES (you probably do not date men/women you find ugly, for example).

If eugenics is a potentially disturbing "sci-fi" tech, what are we to make of dysgenics?

point was to enlarge their family, not enlarge the deaf community

Bullshit. They sought out a deaf donor for the purpose of having a deaf child.

If that had been their goal, they'd have gone to extremes to get what they want.

They did go to extremes. They practiced artificial insemination with a specifically selected donor with a defect that disqualifies him from the even "pedestrian" variety of artificial insemination.

nramsey - If this was a heterosexual couple do you think they want to "create" a deaf child any less?

I don't see that their sexuality has any role in what makes this situation repugnant. If a heterosexual couple composed of a deaf mother with a multi-generational lineage of deafness and a father who lost his hearing as an infant to disease sought out a sperm donor that also had a multi-generational lineage of deafness for the purpose creating a child lacking hearing, that would be every bit as disturbing as this.

Are you saying that had the sperm donor and mother traditionally conceived this child it would have been different? Less selfish? Less deliberate?

No, that is not a part of the thinking behind my earlier statement, but it does run counter to annathea's protestations that they did nothing extreme in their attempt to create a purposefully disabled child, which came up after the comment of mine you are replying to.

I think the discussion in this earlier thread shows that Deaf culture/community has incredibly strong feelings about their rights to be deaf

This is not about the parent's right to be without hearing, it is about about their decision to try to inflict that disability on their child.

annathea - And people, they did not choose deafness for their child, alright? Even by stacking as many genetic odds against having a hearing child as they possibly good, their chances were no greater than 50/50 - and they knew this, and accepted it. They did not "choose" anything but to breed with another deaf person and hope that their child might be deaf.

Pure bullshit. They did everything in their power to insure that their child was born with out hearing, by choice.

It has already been proven by scores of people happily ensconced in the deaf community that they would not change their deafness - not by cochlear implants or surgery or anything else that might become available.

This is wrong. All that has been proved is that they have not done it yet.

Don't you think being raised in that atmosphere would make the child predisposed toward seeing his deafness as less of a hindrance than you feel it is, something that makes him special and part of his community?

More exclusionary, cliqueish and delusional thinking.

"They feel that their life experiences make them better qualified to raise a black child, culturally and spiritually." is the sentence I followed it up with, explaining my viewpoint accurately.

The only validity for this kind of thinking, as applied to a group solely defined by a disability, has to do with raising children, not creating them.

But pardonyou, even previous Metafilter threads have discussed the fact that many deaf people who have the opportunity of regaining some hearing through modern technology have elected not to. Do I need to emphasise this? They chose to remain deaf. So your logic is based on the assumption that any human being would choose to have full use of all five senses - and it's simply not true. Because some people choose to stay deaf who could be otherwise.

More bullshit. This is not about one person choosing to remain deaf, it is about two people deciding to inflict deafness on another person.

bonheur - Many Deaf people really truly do not believe that they are "broken" or disabled in any way.

Those people are deluding themselves. They are disabled.

PeteyStock - I'm not sure where your going with the "Completely irresponsible" bit, but that was my description of the Post's running that paragraph as is.

Why is this* selfish/parochial?

*So advantageous is MSD, in fact, that one of the things Candy and Sharon think about is how much more a hearing child would cost. If the baby is hearing, they'll have to pay for day care. For preschool. Even, if they find they don't agree with the teaching philosophy of the public schools, for private school. "It's awful to think that, but it'll be more expensive!" Sharon acknowledges.

Since, as I've previously stated, the entire piece comes off as an apologia, the selfish aspect comes from their use of the potential future costs of having a hearing child as a justification for their efforts to inflict deafness on their baby. If, as annathea posits, they are prepared to have and provide for a hearing child, then this aspect of their justification really is about nothing more than selfishness. The parochialism comes from yet another display of exclusionary thinking, this time with regard to the schooling of the plebeian masses.

annathea - As a group of hearing folk, we can expound as much as we like really, but none of us can decide if this issue is right or wrong simply because we don't know what it's like.

Really? Watch me:

It is wrong to actively an unnecessarily inflict a major sensory defect on a child, one's own or someone else's.

And have no illusions about whether or not that's what they did. Your protestations about probability are bullshit. The fact that their efforts could have failed does not change their culpability for their "success."
posted by NortonDC at 1:22 PM on April 3, 2002


PeteyStock - I'm not sure where your going with the "Completely irresponsible" bit, but that was my description of the Post's running that paragraph as is

NortonDC - I was thinking along the lines of espada's comment; I should have said that, so mea culpa. And, after rereading that particular passage from the magazine article a few times....yes, that section definitely should have been vetted much better than it was, so on that aspect I would agree with you.

The parochialism comes from yet another display of exclusionary thinking, this time with regard to the schooling of the plebeian masses

Of course, you can also argue that MSD was set up for the specific purpose of excluding the deaf from the comings and goings of the "normal hearing society." Mankind certainly has a record of going to great lengths to try and shunt parts of the population off to the sidelines. Still parochialism, but from a different population size nonetheless.

I don't necessarily agree with your all of your comments, but you do raise some quite thought provoking arguments.
posted by PeteyStock at 2:39 PM on April 3, 2002


many deaf people do not see themselves as flawed or consider deafness to be a disability

The fact that many deaf people do not consider deafness to be a disability doesn't mean it's not a disability; it means that those who hold the belief are deluding themselves. Human beings are supposed to have a sense of hearing. If you don't, you have a disability. Simple as that.

It in no way disparages the accomplishments or worth of deaf people to admit this. However, it does undermine their attempt to portray deafness as a lifestyle. It is not. Lifestyles are chosen. Nobody intentionally destroys their hearing to gain access to deaf culture. Deaf culture exists because people with severe hearing disabilities find it difficult to function in mainstream society. If there were no people with hearing difficulties, deaf culture would not exist, because there would be no need for it.

Intentionally giving a child a hearing disability simply to perpetuate deaf culture is wrong. Deaf culture exists to support people with hearing disabilities, not the other way around.

People with disabilities often argue that a person is not their disability. People have disabilities, not vice versa. In the long run, this is the only reasonable perspective to take, because it preserves the dignity and value of the individual and discourages judging them based on their appearance. This incident brilliantly illustrates the foolhardiness of making the disability more important than the individual who has it. As Richard Bach wrote, "Argue for your limitations, and sure enough, they're yours."
posted by kindall at 2:57 PM on April 3, 2002


Kindall: I agree

Is this any different from performing an operation after the child has been born that will remove his hearing? That of course would be seen as barbaric.
posted by uftheory at 3:26 PM on April 3, 2002


How repulsive it is to want one's child to be deaf, or blind, or stupider than average, or have no arms or legs, or have a condition that makes them shake all the time in a really artistic way. I find the breeding of 'designer cats' with such disabilities disgusting enough to want the perpetrators punished; how can this not be as evil?

Firstly, as others have pointed out one of the 'aims' of being a parent is for one's kids to be 'better' than oneself, in all possible ways. Smarter, richer, kinder, stronger, etc etc. I'm not advocating the use of genetic modification here, but only because it isn't good enough. When (and if) genetic modification to counter traits like Parkinson's Disease is available and reasonably accessible, then I would advocate it, but that isn't the case here and now. Right now, we have to settle for things like education and exercise. I'm sure a lot of people wish there were pills you could give the kid to make it smart and strong, but those people shouldn't be parents. They shouldn't even be pet owners.

Secondly, if it is acceptable to 'hope' one's child is born deaf, and it is such a disappointment that it is not, and the solution to that disappointment is half a minute's work with a sharp pencil in the privacy of one's own home, why is it not acceptable to put the solution into practice? To 'hope' for something but not do anything to make it happen is psychologically, ethically, even theologically questionable. In this Mammonic age we are often told by various 'gurus' to 'achieve our dreams', 'don't accept disappointments', etc. Not making the kid deaf when you want the kid to be deaf runs counter to the prevailing ethic.

It's a dangerous and stupid idea.

Ash.
posted by aeschenkarnos at 4:45 PM on April 3, 2002


My daughter has severe bi-lateral deafness as a result of being born prematurely. On reading the article I am now wondering if her life would have been made easier by being born into a deaf family. If that’s the case then perhaps these women are right. The hardest thing I,ve had to deal with, was the day I realised that my daughter believed she would be able to hear when she grew up and I had to tell her that without some medical break through that wouldn’t be the case. I was later told this is something a lot of deaf children who are part of hearing families, believe. Helen Keller said 'My blindness cuts me off from things; my deafness cuts me off from people”. The schools in our area are trying to change this and now most of the hearing children can and do use sign language. The school’s aim is to provide support to enable deaf students to be fully functioning and equal members of their regular class within the context of a bilingual-bicultural approach. The staff involved in The Claremont Project believe the aim of integration is not to make disabled people 'normal' but to allow them the same opportunities and choices as their hearing peers. The development of the program has been strongly influenced by the belief that successful integration will entail adapting the mainstream. Hence parents and siblings sign with their deaf children; most hearing students in the Claremont Schools sign; regular classroom teachers have modified their teaching styles; work given to students may be modified to suit the particular needs of an individual; and interpreters are provided for all academic, sporting and social aspects of the schools.
posted by Tarrama at 6:34 PM on April 3, 2002 [1 favorite]


Tarrama - My daughter has severe bi-lateral deafness as a result of being born prematurely. On reading the article I am now wondering if her life would have been made easier by being born into a deaf family. If that’s the case then perhaps these women are right.

No. That is deeply flawed thinking. Normally I do not come down anywhere near this hard on people at MetaFilter, but events as described in the article make the danger in such thinking all too clear.

If you were to reach the conclusion that your daughter would be better off being in a deaf family, then that is a reason for her to raised by a deaf family. It is not a reason to inflict deafness on a child.
posted by NortonDC at 7:19 PM on April 3, 2002


While a lot of the arguments against this are convincing (they've certainly swayed me more toward the "against" side than the middle ground I occupied earlier), I do think there's an important difference between "intentionally inflicting deafness" (as NortonDC and others have worded it, and which isn't really what is going on in this case) and selectively breeding for deafness (which is what the women in the posted article are doing). The way the former is worded makes it clearly immoral, since it implies that the child had the potential to be normal and that that potential was taken from it by some direct action, the morality of the latter is less clear-cut, since a congenitally deaf child could never have been any other way so there is no lost potential (not to mention that there is no guarantee that the child would be deaf).

Oh, and NortonDC, I saw nothing on the page you linked that associated the bulk of congenital deafness (non-syndromic, 80%) with any "nontrivial disorders". People with non-syndromic deafness are just deaf. Syndromic deafness (by definition part of a syndrome of other congenital abnormalities) only accounts for 20% of congenital deafness.
posted by biscotti at 8:07 PM on April 3, 2002


NortonDC It is not a reason to inflict deafness on a child
I don’t think the majority of the deaf community would think they were “inflicting” deafness on a child. They mostly seem to view deafness as simply another way of communicating, not as a disability.
posted by Tarrama at 8:29 PM on April 3, 2002 [1 favorite]


Actually, I will drag their sexual orientation into this, just as others have drug cultural differences into the discussion. Something that resonanted with me when Ellen came out was when she said "Black parents can understand the emotional needs of a black child, but straight parents cannot understand the needs of a gay child." What this infers is that, as a gay person, or couple, you have very specific needs, even moreso if you are gay and deaf. These women think with the same rationale.

Do I think their sexuality has something to do with it? Yes. To feel isolated, not only on one level, their sexuality, but their physical condition as well, it has to be a guiding force in their emotional development. They then bring it into this arena, where they openly admit to causing a handicap. It's one thing to want to be a part of a community, but to think that this child, if it grew up with some hearing ability, would be less inclined to "understand" or "accept" their parents is absurd. Children are more malleable than that. The child would have the best of both worlds: capable of hearing, yet just as engrossed in the deaf community as his parents.

Screening to ensure, as much to your ability as you can, a deaf child is morally wrong. Imposing your worldview in such a way to cause harm to the child, that's wrong. I don't think their giving their child enough credit.
posted by Psionic_Tim at 8:36 PM on April 3, 2002


I've never had a problem with the concept of deaf culture. There are hundreds of subcultures within any culture, based on religion, ethnicity, language, etc. etc. If someone chooses to live, for the most part, within such a culture, it's their choice, at least to some degree.

I fully understand the desire to have a child that shares some of your own traits. My wife and I tried for years, but were unsuccessful, and we've since adopted. We couldn't be happier with the results.

But this just bothers me. First of all, intentionally breeding for a disability is morally questionable. Even if you happen to prefer people that have the disability, there's no denying that it's a deficit, and it will limit the options for the child's future.

Then, there's the fact that there are already thousands of special needs children out there (maybe even some deaf ones!) that desperately need families.

But what pisses me off is the fact that the child has some hearing, and the parents won't do anything to develop it - that borders on child abuse:

If he wants a hearing aid later, they'll let him have a hearing aid later. They won't put one on him now.

A parent's main responsibility is to act in the child's best interest, not the parent's. Young children do NOT know what's best for them. As time passes, there's less likelihood the child would be able to gain anything from the treatment.

Anyone care to guess how many second opinions they sought after finding out their experiment in genetics was successful?
posted by groundhog at 8:40 PM on April 3, 2002


biscotti - I do think there's an important difference between "intentionally inflicting deafness" (as NortonDC and others have worded it, and which isn't really what is going on in this case) and selectively breeding for deafness (which is what the women in the posted article are doing).

It's not just the way it's worded; it's the way it is. They used every means at their disposal to insure that their child would be born with a major defect, specifically changing there course of action to make it happen.

Oh, and NortonDC, I saw nothing on the page you linked that associated the bulk of congenital deafness (non-syndromic, 80%) with any "nontrivial disorders".

Jolly. I never said anything about "the bulk of congenital deafness." What I said is that there is evidence annathea's statement that "Deafness does not mean a greater risk of other defects," is false.

Tarrama - I don’t think the majority of the deaf community would think they were “inflicting” deafness on a child. They mostly seem to view deafness as simply another way of communicating, not as a disability.

Then they are deluding themselves. Signing does not require the major sensory defect of deafness.
posted by NortonDC at 9:01 PM on April 3, 2002


Saying that one can accept the idea of the existence of deaf culture but that one would never trade a functioning sense for a culture is to sell culture very short indeed. If someone offered me the choice between becoming deaf or somehow having my 'cultural essence' eradicated (what would that take? A lobotomy?), I would reluctantly choose the former -- and believe me, I don't want to be deaf.

To paraphrase one of the posts above (and I'm not picking on you, gordian knot, just choosing your post as an example of the majority view in this thread), how would we feel if we read this:

One of the extraordinary things about a subsection of [American] people is that they have turned [American] culture into a cult. This is just another form of fanaticism, an inability to come to terms with the real world. Only if they stay within the [American] culture can they say that [American]ness isn't a handicap. To choose that kind of limitation for yourself is one thing, to choose it for unborn children should subject you to the same laws that protect children (or try to) from parents who do drugs on a regular basis.

We'd think it ridiculous. Except that some of it isn't so ridiculous... in fact, only the references to cults and fanaticism and the last line calling for legal protection now strike me as ridiculous... which seems to be annathea's point in making the comparison with black culture. Insert 'black' for 'American' in the paragraph above, and see how it reads.

Many of the arguments here seem equivalent to many Americans' blinking incomprehension that someone might actually not want to be American. "What do you mean, Chinese people are proud to be Chinese -- don't they realise how disadvantaged they are compared to us?" Yes, it's hard for those of us in hearing culture to know what it's like to be part of deaf culture, but it's hard for me to know what it's like to be Swedish. Or American, for that matter.

Thinking about deafness makes hearing people think about how they (we, with apologies to any deaf people reading) would feel being deaf, but we can only imagine what it's like to become deaf (pretty bad, we imagine, when you've been brought up hearing) -- not what it's like to be born and raised in deaf culture (and it's also possible to be deaf from childhood and not be part of deaf culture, as annathea points out).

We're thinking 'no music, no bird song', while deaf-cultured people are thinking 'no entirely different way of looking at the world shaped by sign language, deafness and deaf culture'.

Imagine you're part of a minority culture living among a majority culture, and knowing that any child you have is likely to be part of that majority culture, not your culture -- speaking their language as their native tongue, and thinking like their people and not your people. If you're an immigrant with young children, you may not have to imagine too hard. Now imagine that you can reduce that likelihood by having children with another person from your own culture. Would you?

Some of us wouldn't, just as some immigrants like the fact that their kids are growing up American (or British, or whatever). But others would try to pass their culture on to their kids in whatever way they can, because they think their culture matters.

I'm not saying I would make the same choices as these women -- and I'm not saying that I wouldn't. Because when it comes down to it, I don't know what it's like to be in their shoes, and there's only so far imagination and empathy can take me. And given that, I certainly wouldn't call for them to be subjected to punitive legal measures simply for selecting a mate from within their own culture.

Yes, it's hard to get ahead in a predominantly hearing culture when you're deaf. But it's hard to get ahead in a white culture when you're black, male culture when you're female, and so on. And yes, a life without music is missing something -- so while we're at it, let's ban those fundamentalists churches that frown on singing and dancing. Let's also insist that every child learn every language of the world, and undergo gender realignment at some point so that they can feel what it's like to be the opposite sex. Or... let's not.

Willfully deafening a living, breathing, hearing child would be reprehensible, but this is not that, any more than wishing for a boy is the equivalent of female infanticide. Extrapolation is all well and good, but extrapolating a poke in the eye and calling it murder isn't.

(Oliver Sacks's Seeing Voices, mentioned in the article, is an excellent book on these issues.)
posted by rory at 3:49 AM on April 4, 2002 [1 favorite]


We're thinking 'no music, no bird song', while deaf-cultured people are thinking 'no entirely different way of looking at the world shaped by sign language, deafness and deaf culture'.

Very well said rory.
posted by Tarrama at 5:53 AM on April 4, 2002


rory, you make some good points, but I wonder how the child is going to feel when he finds out that his parents did not, according to this article, make any effort to use or nurture the limited hearing he was born with.

And as I noted before, out of the thousands of children with special needs that are available for adoption, there are surely some deaf ones.
posted by groundhog at 6:51 AM on April 4, 2002


rory, you make some good points, but I wonder how the child is going to feel when he finds out that his parents did not, according to this article, make any effort to use or nurture the limited hearing he was born with.

And as I noted before, out of the thousands of children with special needs that are available for adoption, there are surely some deaf ones.
posted by groundhog at 6:52 AM on April 4, 2002


Sorry 'bout the dupe. User spasm.
posted by groundhog at 7:02 AM on April 4, 2002


"if you believe deafness is a disability, then these people done a Bad Thing. And if you believe it isn't, then they didn't."

I can see where you are coming from but I think that this topic is far more complex, both in moral and relative terms, than your statement suggests. Deafness is something that limits life choices. I don't think parents should try to do that, although many parents do.

When a deaf parent chooses a deaf donor because they want their child to be more like them, they are limiting their child's choices. I personally, wouldn't like knowing that my parents had done that. And they are assuming that the child will always want to be with them, live in their community. I can understand their fear. It's natural. Sometimes love can hurt. But I still don't think they are right.

It's possible to think this is wrong, without being discriminatory towards people who are deaf, or even thinking of deafness in terms of a disability. It's just that I don't think parents have a right to make that kind of choice for their child. Because their child might grow up to deeply resent that choice, and thus from the point of view of family dynamics, that could cause a rift that is never healed.

Some people seem to be assuming that the child will grow up feeling pleased that this decision was made for them. But how do we know this will really be the case?

If people have never been able to hear, how can they judge, for their child, that they would be happier not hearing?

"It may seem a shocking undertaking: two parents trying to screen in a quality, deafness"

If nobody could hear, then deafness wouldn't exist. There wouldn't be a name for it, and even without a name existing, the thing wouldn't exist. Thus deafness isn't a quality, it's the lack of a certain quality, which is the quality of being able to hear.
posted by lucien at 7:20 AM on April 4, 2002


rory, I still don't buy the comparison. The basis of most cultures is, yes, being different from the mainstream, or being different from the neighbors, or being different from the barbarians on the other side of the river. But deaf culture is based on being physically unable to do something that healthy human beings are able to do, and having to compensate for it. However vibrant and fascinating deaf culture may be, they still can't hear anything.

I joked earlier about the fact that I can't run very far, so I'm disabled compared to my mother-in-law (NY Marathon 2001). But I could learn to run if I wanted to. Just as, in your example, a child of immigrants still has the choice to assimilate into mainstream culture, or not, as he pleases. But this child isn't going to have a choice, and I think that's what bothers me most about this.

Yes, I read all the statements that some deaf people would choose to remain deaf, even if they could be cured. I don't think this is self-delusion on their part, as some have said, but I don't find it a very compelling argument in their favor, either: one of the reasons cultures persist is that they're self-reinforcing. For a deaf person who already has a life set up that works for them, gaining hearing would mean a lot of disruption and change that they may not want to go through. But just because some people choose to live in diminished circumstances doesn't mean they should be able to make that choice for others.

I agree that extrapolating this too far comes uncomfortably close to eugenics, and I agree that what these parents are doing isn't the same as poking the kid's ears out... but neither is it the same as just "wishing for a boy". They are deliberately increasing the chances of this kid being stuck with a physical disability; from my point of view that's taking it too far.

[On preview: lucien, you're right; that's pretty much the conclusion I came to after sleeping on this. My earlier statement that you quoted was cultural relativism taken to an absurd degree.]
posted by ook at 7:35 AM on April 4, 2002


NortonDC: It's not just the way it's worded; it's the way it is. They used every means at their disposal to insure that their child would be born with a major defect, specifically changing there course of action to make it happen.

They did *not* use "every means at their disposal" to ensure that the child would be born deaf; they didn't stick sharp objects into its ears, they didn't try and induce premature delivery, they didn't take medications while pregnant which might cause deafness in the child, they merely used sperm from a deaf man. Which, while definitely morally questionable, is not the same thing as taking hearing away from a hearing child. If the child is congenitally deaf, it could never have been any other way.

And:What I said is that there is evidence annathea's statement that "Deafness does not mean a greater risk of other defects," is false.

The evidence you cited does not support your claim that annathea's statement is false. Being deaf in and of itself puts you at no greater risk of other defects, according to the page you cited. Those who *do* have other defects do not have those defects because of their deafness, they are deaf as a part of a syndrome caused by genetic mutations, the syndrome is not caused by the deafness, the deafness did not place them at risk of developing the syndrome, the syndrome caused the deafness. You cannot "cause" one of these syndromes (unless you are a carrier of a hereditary one) by breeding for deafness as these women did. They placed their child at no greater risk for any defects (other than deafness, obviously) than the general population.
posted by biscotti at 7:42 AM on April 4, 2002


biscotti: They placed their child at no greater risk for any defects

Are we sure of this? We barely understand congenital defects as it is -- can we say conclusively that, though a previous child only shows deafness, and each of the two women only shows deafness, and the sperm donor only shows deafness, that the child will only be deaf?

Gauvin was born with a stronger defect than his mother. Not much is said about the donor, so I can't say for sure, but I imagine that the defect is worse with each generation. If so, isn't the child at greater risk for other defects? I don't know, but I can't say that the child was not at greater risk than if the donor had been a healthy, and hearing, man.
posted by dwivian at 8:26 AM on April 4, 2002


[ook:] a child of immigrants still has the choice to assimilate into mainstream culture

A child absorbs whatever culture(s) they're brought up in, those being a complex mix of family culture, peer-group culture, minority culture, the wider culture, and so on. They don't -- we didn't -- have much choice in the matter, any more than we can choose not to learn our native tongue -- by the time you're aware that you can choose, you've already learnt it.

Other points... While I can imagine circumstances in which a child might resent being born deaf, I don't see how that's so vastly different from resenting being born imperfect in other ways. I can also imagine a child moving beyond that resentment and accepting themselves for what they are: because if they weren't deaf, they wouldn't be them, they would be someone else. It's like wishing you had a different father: if you did, you wouldn't exist -- some other person would, the child of your mother and this different father; it wouldn't be you.

I'm a skinny unathletic type with various human failings, but I don't resent my parents for my genetic make-up; why on earth should I? They -- my parents and my genes -- enabled me to exist; a different roll of the dice, and someone quite different from me would have existed (does exist; my brother). And I can't somehow untangle myself and say 'Well, if I was athletic I would have been just the same as I am now except I could run faster'; being athletic would have fundamentally changed my childhood, and could have changed the whole course of my life. It would be the same for a deaf child. They would have more cause to feel resentful if their upbringing sucked, but by the sounds of it their family environment will be fine.

[groundhog:] I wonder how the child is going to feel when he finds out that his parents did not, according to this article, make any effort to use or nurture the limited hearing he was born with.

That's a reasonable point (and separate from the whole 'should he have been conceived this way' debate), but the article suggests that his limited hearing is very limited, in which case it's questionable how much value he'd get from it anyway. And that value has to be weighed against the effort needed to learn how to make use of it (effort that therefore won't be directed in other more useful ways), and the pain he'll feel when it deteriorates -- and one of his parents knows what that's like, because she lived through it herself. It reads to me like the parents are thinking deeply about these things, and are doing what they honestly believe is in his best interests.
posted by rory at 8:30 AM on April 4, 2002 [1 favorite]


Rory, I really appreciate your posts on this subject, because you are saying things I agree with in a way I should have attempted to say them in the first place.

Your last two posts are dead on, in my opinion. As the child of an accidental teen pregnancy, I have a few resentments about the circumstances I was born in and the genetic make up involved - but I like who I am, and recognize that I wouldn't be me if those things didn't occur.

Again, thank you for your insights.
posted by annathea at 9:09 AM on April 4, 2002


A child absorbs whatever culture(s) they're brought up in

Absolutely -- and that's what I mean when I say cultures tend to be self-reinforcing. But that's the distinction I'm trying to draw between deaf culture and others: the possibility of change. One can grow up, move to another city or country, and reject the culture you were brought up in: it happens all the time. But one can't reject being deaf. Granted, one can't reject having black skin, either (for example)... but black skin isn't a physical disability; in and of itself it doesn't prevent you doing anything anybody else can do.

Your points about genetic makeup: yes, but nobody deliberately tried to skew your genetics in a particular direction. If they had, would you feel differently? What if (to take an absurd example) there were a vibrant, compelling culture based around having no legs, and these parents had done their best to skew the odds in favor of their child being born without legs? Would it still be their choice? It's not much of a handicap, these days; we've got wheelchairs and wheelchair ramps and even specially built downhill skis... Reductio ad absurdum, I know. But I just think there's a fundamental difference between being born skinny and unathletic, and being born deaf. I'm having a difficult time defining exactly what that difference is, however. (As is, I'm sure, obvious. :)

This is going to become more and more of an issue as our ability to do genetic screening -- and eventually modification -- increases: I'm sure most of us would agree that it'd be a Good Thing to screen out life-threatening defects by any means possible, and that likewise we'd all agree that it'd be Bad to, say, screen out all non-aryan features. In between is a gaping wide grey area: should you screen out deafness? Low intelligence? Propensity for heart disease? Social maladaptivity? I don't know. Gotta draw the line somewhere, but other than unrational, gut feeling, I don't see how to place that line.

I don't necessarily think you're wrong. I just think we're coming to different conclusions, perhaps for equally good reasons.

'scuse me, I'm going to go rent Gattaca now.
posted by ook at 9:09 AM on April 4, 2002


dwivan: Point taken, I don't know that we're *sure* of it. I do know that in the vast majority of cases of congenital deafness (non-syndromic) there are no other defects (as stated by the linked article). The fact that the child's deafness was more severe than his mother's (I haven't reread the article, so I'm going by what you said) doesn't make him more likely to have any other defect, if you follow me: simply having a more profound deafness doesn't imply that there is something not hearing-related also likely to be wrong (not least because as far as I know hearing tests are not an exact science). As for the defect being worse with every generation, there is no evidence that this is the case to my knowledge, it may be true in this one case (mother to son), but that doesn't imply that it's anything more than happenstance. And finally, no, Gauvin does not seem to be at risk for other defects, going by the data at hand (i.e. we have no genetic information on him or his parents, so I assume he has non-syndromic deafness), there is no correlation between being non-syndromically deaf and having any other defect. Deafness of the syndromic variety is a symptom of a syndrome (like epicanthic folds on the eyelids are a symptom of Down Syndrome), but the deafness (however profound) does not, in and of itself, place the individual at any greater risk of other problems than the general population (f'rex, epicanthic folds are normal in some people (like many Asians), but they are also a symptom of Down Syndrome in those who *have* Down Syndrome: you either have the syndrome, or you don't, having something which happens to be a symptom of a genetic syndrome without the genetic syndrome itself has no implications).
posted by biscotti at 9:14 AM on April 4, 2002


biscotti: Thanks for that! This has been my most successful FPP to date, and I'm glad that, for the most part, it was quite civil!

Oh, and you suck.

Do I get to mention Hitler now?

(I am tempted to start singing the words "I was drunk the day Mom got out of prison...."
posted by dwivian at 11:43 AM on April 4, 2002


Illness prevents me from being as detailed as I'd like with this response. I may be able to deliver a more detailed response later.

They did *not* use "every means at their disposal" to ensure that the child would be born deaf; they didn't stick sharp objects into its ears, they didn't try and induce premature delivery, they didn't take medications while pregnant which might cause deafness in the child, they merely used sperm from a deaf man.

Please pay my writing at least the level of respect I give yours under duress. They could not stick objects into it's ears until after it is born, and as your quoting of my writing shows, I said they took those measure to have their child be born deaf. The others require the assistance of the medical community, a community whose first ethical principle is "do no harm," making those unavailable, too.

The evidence you cited does not support your claim that annathea's statement is false. Being deaf in and of itself puts you at no greater risk of other defects, according to the page you cited.

The link shows that congenital deafness is a symptom of other serious disorders. Selecting only for a major sensory defect that shares a common cause with other serious congenital defects will bias the pool toward donors, and offspring, with those conditions. My statement is valid.
posted by NortonDC at 11:54 AM on April 4, 2002


yes, but nobody deliberately tried to skew your genetics in a particular direction. If they had, would you feel differently?

I have no idea. If one's parents were attracted to each other because of certain physical and mental features they each had, does that mean they were trying to 'skew your genetics'? Is it okay if it's unconscious, not okay if it's conscious?

What if (to take an absurd example) there were a vibrant, compelling culture based around having no legs...

Why complicate things with an absurd example, when we have a real one right here? I'm not sure that different disabilities can be readily interchanged in this argument. Someone raised the issue of blindness above, but it's a different situation... I vaguely remember Sacks drawing comparisons between deaf culture and the lack of a comparable blind culture in Seeing Voices (it's a while since I read the book, so I can't swear to it).

But if there were a 'vibrant, compelling culture' based around any particular human trait, then I'd argue that having some parents strive for their children to share that trait and hence that culture would be understandable, given the importance of culture to human beings.

Step back for a moment and think about what some have argued for here. We have two consenting adults -- one of the women, and the father/donor -- both consciously and willingly conceiving a child together, without any scientific Gattaca-type contrivances beyond in vitro fertilisation; indeed, the child might even have been conceived naturally. And some people here are arguing that these two rational, consenting adults should have been prevented by force of law from conceiving a child together. Step back and think about the implications of such a law, and then let's start talking about 1984.
posted by rory at 12:09 PM on April 4, 2002


NortonDC: I think we're just going to have to agree to disagree. What I said had nothing to do with whether I respect your writing (I do) and everything to do with arguing a semantic point which it seems clear we're not going to come to any agreement about, and besides that I've ended up seeming as if I'm arguing *for* what these women did, when really I have no opinion, I just see a difference that you don't see.

Finally, just because *some forms* of congenital deafness are a symptom of some syndromes does not logically lead to the conclusion that *all* forms of deafness can be linked to more serious problems. The "common cause" for deafness that your argument rests on doesn't really exist as you imply: there are many different causes (and forms) of deafness (as evidenced by the article you linked).

dwivian: what are the words and what do they have to do with Hitler?
posted by biscotti at 12:48 PM on April 4, 2002


Is it okay if it's unconscious, not okay if it's conscious?

Hmm... possibly! Unconscious selection implies love and attraction, conscious selection implies breeding and eugenics. I'm not saying that one is always good and the other is in all situations evil, and I'm definitely not saying that there is or should be any way to legislate it. But yeah, to me, the intent is pretty important here.

Why complicate things with an absurd example, when we have a real one right here?

You're right, it's a lousy example. I was trying to find out if it was something about deafness per se that you're talking about, or if it's more general... and I didn't want to get bogged down in irrelevant medical details. Sort of a lame attempt to figure out where you draw the line, which is difficult to do if you're focused on a single point. I gather from your next paragraph that your argument is not in fact about something intrinsic to deafness:

...I'd argue that having some parents strive for their children to share that trait and hence that culture would be understandable

That's a tough one.

I suppose the very fact that "deaf culture" exists could be seen as evidence of sorts that it's not a handicap, difficult though that is for me to grasp -- or at least that if it is, it's minimal enough in its effects that the culture itself is enough to make up for it. (Which brings me full circle.)

But I'm not sure I'm convinced that that's enough: it's well and good to say "that's their culture, they can do what they want." But some cultures engage in practices I find abhorrent, however socially relevant and important they may be within the culture. I'm wandering pretty far afield, here, and in this particular case I almost agree that it's okay -- which is a long way from where I started the thread, so if you like you can count that a victory.

And some people here are arguing that these two rational, consenting adults should have been prevented by force of law from conceiving a child together.

Not me. Social disapprobation and moralizing from a distance is much more my style; this is far too sticky an issue to let the politicians get hold of it. But that's just me.

One thing, though: I'm aware that most people are going to consider this an oddball opinion, but to me the method they used doesn't matter in the slightest. High-tech gene splicing, prayer, or good old-fashioned selective breeding, makes no difference; the end result is that they're using technique X to deliberately increase the chance of trait Y appearing -- in this case deafness -- by percentage Z. Y and Z seem relevant, to me; X doesn't. I know, kooky.

But it's another interesting where-do-you-draw-the-line question... let's say the method they chose increased the chance of deafness by 25%, which you consider OK. (Not trying to put words in your mouth, and no idea whether that figure is even vaguely correct. But bear with me.) And the method they didn't choose -- deafening a hearing child, 100% effectiveness -- nobody would consider OK. (But -- devil's advocate, for a moment -- why not, if deafness isn't a handicap? Because it's an injury, and not a "natural" development for the child?) If they had genesplicing that would prevent hearing from developing with 100% effectiveness, would that still be OK? What if there were some "natural", non-violent, non-science-fictiony but still 100% effective method? What, in your opinion, makes it acceptable for these people to make this choice: that they used a 'natural' method, that it might not succeed, or that it's nobody's business but theirs? Or all (or none) of the above?

I'm not trying to argue you out of your position -- this discussion has been a pleasure, actually -- I'm just starting to find this really interesting: there isn't a set of answers to those questions that isn't either logically inconsistent or heartless and barbaric (or both). Not that I can see, anyway.

Me, I'll stick with logically inconsistent. Though like biscotti and NortonDC I suspect we may have to just agree to disagree on where those inconsistencies lie.
posted by ook at 1:44 PM on April 4, 2002


For me, the only question is what the child would want if honestly given the choice (and note that that is very different from asking an already deaf person whether he or she would choose to be deaf or to have hearing)

How is it different at all? The child would be "an already deaf person".

This is not about the parent's right to be without hearing, it is about about their decision to try to inflict that disability on their child.

They aren't inflicting deafness on a hearing child, they're inflicting existence on a deaf child - if they hadn't chosen that donor, the child born would never have existed. Whatever child is born is genetically deaf and could never have existed in any other capacity.

And the method they didn't choose -- deafening a hearing child, 100% effectiveness -- nobody would consider OK. (But -- devil's advocate, for a moment -- why not, if deafness isn't a handicap?

I think because of the same fact I pointed out above: a child who is genetically deaf never had the possibility of being a hearing child. However, if futuristic sci fi things like gene splicing eventually separate the parts from the whole to a significant degree, so that the genetically deaf child could be very nearly the same person, except with hearing, I'm not sure how I'd answer... But if we get to a point where specific traits can be chosen and others changed, there are gonna be huge numbers of questions, as someone above pointed out - what traits are we comfortable enough calling defects that we would consider it proper to splice them out? Almost everything except life threatening disease and severe mental retardation seems like it would be dangerous to me.
posted by mdn at 2:42 PM on April 4, 2002


mdn: They aren't inflicting deafness on a hearing child, they're inflicting existence on a deaf child

Nope; I don't buy that at all. They're having one child, it will either be hearing or deaf; they're skewing the odds towards deaf -- whether it's the "same person" or not doesn't really enter into it. Perhaps it'd be more accurate to say they're 'encouraging deafness in a potentially-hearing child'.

But if we get to a point where specific traits can be chosen and others changed, there are gonna be huge numbers of questions, as someone above pointed out - what traits are we comfortable enough calling defects that we would consider it proper to splice them out?

Yep -- that's the crux of it right there, and I suspect everybody's going to have a different answer to that question. When this thread started, I'd have felt pretty darn comfortable putting deafness in the 'defect' category, but I'm not so sure anymore.


[incidentally - if you quote and respond to 3 different people in one post, you might want to attribute the quotes... I thought you were putting words in my mouth until I realized the other two quotes were from other people. Not that I'm emily post or anything, but just a thought.]
posted by ook at 3:25 PM on April 4, 2002


Hello, I'm Emily First Post.
posted by NortonDC at 4:05 PM on April 4, 2002


[ook:] Unconscious selection implies love and attraction, conscious selection implies breeding and eugenics.

I left that question rhetorical because I'm not sure where I'd draw the line, either. But it's definitely worth thinking about. I accept that intent can make a difference -- the difference between murder and manslaughter, for example -- but then is intentionally bringing a (particular kind of) life into the world as reprehensible as intentionally ending one? Why do we even have to draw a line? Do that, and we could end up lumping these deaf kids in with the Boys from Brazil.

it's well and good to say "that's their culture, they can do what they want."

Not something I'd say in any absolute sense: I'd say that people should be allowed to do what they want (whether culturally-determined or not) within the constraints of national and international law and universal human rights; what those might be is a debate for another day, but I'd certainly expect that choose your own mate is well within their boundaries.

That can lead to 'breeding', I guess, but then 'twas ever thus -- look at the royal families of Europe. I find eugenics distasteful too, but this case is about two people's personal choices about their own reproductive activity: they're not advocating that all deaf people do as they do, or that non-deaf people be prevented from breeding, or any of the other traits of eugenics movements.

to me the method they used doesn't matter in the slightest.

Personally, I'd draw the line at mad scientists creating races of mutant octopus children by staple-gunning tentacles to new-born genetically-modified monkeys. But maybe that's just me.

I'm tempted to agree with you, ook, but I can see grey areas... there are always grey areas... but then human beings have been modifying themselves from their 'natural' state in so many ways for so long that it does seem a bit late to worry too much about the 'how' rather than the 'why'.

let's say the method they chose increased the chance of deafness by 25%, which you consider OK. (Not trying to put words in your mouth, and no idea whether that figure is even vaguely correct. But bear with me.)

I'll bear with you, but point out that my considering it okay or not should have no bearing on the matter. All I'm saying is that in most Western societies it's considered okay for people to be allowed to choose their mate. And for what it's worth, that's okay by me.

And the method they didn't choose -- deafening a hearing child, 100% effectiveness -- nobody would consider OK. (But -- devil's advocate, for a moment -- why not, if deafness isn't a handicap? Because it's an injury, and not a "natural" development for the child?)

(a) Some handicaps are defined as such only in relation to particular cultural values. For example, if I cannot read, then to most intents and purposes I am handicapped in Western culture -- but not in some other cultures. Deafness is obviously defined as a handicap by hearing culture, but by many deaf people -- by deaf culture -- it isn't. In this case, we hearing people are being confronted by a different cultural value system, and some of us don't like it. Well, unless we can demonstrate that this case contravenes the law of the land, human rights etc., we just have to live with it. That doesn't mean that one personally has to accept it. But, personally, in this specific case, I do.

(b) Wilfully deafening a hearing child (or blinding, or whatever form of crippling) would be seen as an assault against another human being -- perhaps not in some extremely hypothetical Fundamentalist Deaf society, but that's not what we're dealing with in this case -- and in Western societies I imagine that this would contravene the law.

But the selective breeding described here isn't an assault against a child, because no child exists yet: there's only a hypothetical child. You can't assault a gleam in someone's eye.

This is why gene-splicing would be a grey area: you can only gene-splice an embryo that already exists. And for some people, as the abortion debate shows us, even an embryo is considered a fully-fledged human worthy of the full protection of the law. Others believe that we become fully human later than that, so might consider gene-splicing before such point to be okay. Forgive me for not wanting to get into that whole debate just now; it's late here in GMT-land.

What, in your opinion, makes it acceptable for these people to make this choice: that they used a 'natural' method, that it might not succeed, or that it's nobody's business but theirs? Or all (or none) of the above?

1. That their actions are not harming an actual, living human being. The question of 'harm', however we define it from whatever cultural stand-point, in this case only applies to some hypothetical human being who does not exist yet. That it might not succeed comes into it: if they had a 100% successful method of conceiving and bringing to term a deaf child, then the hypothetical human being would no longer be hypothetical, they would be a certainty. Since no pregancy is 100% guaranteed to produce a child, this 'certainty' is itself hypothetical; but, assuming for the sake of argument that certain means certain, then...

2. For me to consider their actions unacceptable, I would have to believe that being deaf within a deaf family equates to 'harm' to that child in every case -- which I don't. It possibly may in some cases, I concede, but on the evidence I've seen so far I don't believe it does in every case. But even if I did, my personal beliefs shouldn't be the issue. If society shared those beliefs, and legislated accordingly, then they would have a problem. But since they're breaking no law, the question of who they have a child with should be nobody's business but theirs. They've made it our business by letting themselves be interviewed about it, but they need not have.

There's probably more to say, but I'm done. The time zone difference is killing me. Thanks for a good thread, though.
posted by rory at 4:14 PM on April 4, 2002


Huh, google sez that's the first time anybody's written that (EFP) on either the interweb or usenet. Bully for dehydration.

[preview...]

Lots to correct, when health allows. (for starters, lacking hearing is not a culture, it is a fact of biology)
posted by NortonDC at 4:23 PM on April 4, 2002


Your opinion of this hinges upon whether congenital Deafness is considered a disability. If you consider it a disability, then arguably a woman (Deaf or not) who actively attempts to have a Deaf child might be considered atrocious for attempting to inflict a disability upon someone helpless.

However, I worked (as a hearing staff member) at Gallaudet University for three years. That doesn't make me an expert in Deaf Studies, but it's more firsthand experience living and working in the Deaf community than 99.98% of other hearing people have.

Many people in the Deaf community do not consider themselves disabled. They consider Deafness a "difference," much as skin color. Does this difference pose challenges? Sure. But so does skin color. Is a Black mother who desires a Black child "at fault" for bringing into the world a child who will not have the same advantages as a white child? Should Black mothers actively attempt to improve the potential long-term advantages their children will have by searching for white fathers Go back through this thread. Substitute "Black" or "Blackness" for "Deaf" or "Deafness" in this thread and see how preposterous the accusatory statements about this Deaf couple seem.

If that analogy itself seems preposterous to you, then you are still viewing Deafness as a disability instead of a difference. If that's the case, then I'd challenge you to justify why we should view Deafness as a disability, especially when the people "afflicted" with it don't. Why should they be required to accept this externally-imposed label, when they feel it doesn't apply to them?
posted by monkey-mind at 4:35 PM on April 4, 2002


lacking hearing is not a culture, it is a fact of biology

No one's saying that 'lacking hearing is a culture'; rather that deaf culture has grown up among people who share the experience of deafness. It's deaf culture that the parents want for their child. That's the whole point.
posted by rory at 4:36 PM on April 4, 2002


Yep - I'm out of steam. Rory: likewise. Monkey-mind, NortonDC: take it from here, and try not to go in too many circles...
posted by ook at 4:57 PM on April 4, 2002


No, that's a completely bogus misrepresentation of the situation. They did not practice dysgenics to brew up a bouncing baby signer, they did it to keep their child as limited as they are because they are to afraid to face the larger world.

For a parent to inflict a major sensory defect on their child because they fear it could surpass them and leave them behind is one of the most despicable acts imaginable.

Small posts are all I can give tonight.
posted by NortonDC at 5:04 PM on April 4, 2002


monkey-mind - congenital Deafness

Stop and unload that bullshit somewhere else. The only possible justification for capitalizing the "d" is to refer to a culture (and when conditions allow I may explain why even that is to be resisted as it is being used as a tool of bullshit posturing).

Culture is not congenital, period. Peddle that shit elsewhere.

They consider Deafness a "difference," much as skin color.

Next time try to keep up, okay? Echoing myself, race is not a defect. Lacking hearing is a major sensory defect.

Is a Black mother who desires a Black child "at fault" for bringing into the world a child who will not have the same advantages as a white child?

Sigh. "Echoing myself, race is not a defect. Lacking hearing is a major sensory defect."

Should Black mothers actively attempt to improve the potential long-term advantages their children will have by searching for white fathers Go back through this thread. Substitute "Black" or "Blackness" for "Deaf" or "Deafness" in this thread and see how preposterous the accusatory statements about this Deaf couple seem.

Fuck you. I suggest you read it before commanding the rest of us to reread it. This crap pisses all over the contributions of everyone to the thread, pro and con. Show a little respect to the people that cared enough to contribute for a day and a half if you want people to give a damn about what you've got to say.

If that analogy itself seems preposterous to you, then you are still viewing Deafness as a disability instead of a difference.

Absolute bullshit. All disabilities are differences, but not all differences are disabilities. No one is arguing that that lacking hearing is not a difference. Weak.
posted by NortonDC at 5:28 PM on April 4, 2002


Funny, that doesn't look small.
posted by NortonDC at 5:30 PM on April 4, 2002


Nope; I don't buy that at all. They're having one child, it will either be hearing or deaf; they're skewing the odds towards deaf -- whether it's the "same person" or not doesn't really enter into it. Perhaps it'd be more accurate to say they're 'encouraging deafness in a potentially-hearing child'.

No, it's that they're choosing which child to bring into being. They could possibly have a normal child; they are choosing over that normal child to bring a deaf child into the world (or hoping to). The deaf child will most likely have the same feelings about being deaf that so many deaf people have, and that the parents have, in that they don't consider it a disability. Therefore the child is not being hurt by this - or, if the child did wish to become hearing, s/he could also not hold it against the parents, since if they had chosen a different donor, s/he wouldn't have been born at all.
posted by mdn at 6:18 PM on April 4, 2002


mdn - The deaf child will most likely have the same feelings about being deaf that so many deaf people have, and that the parents have, in that they don't consider it a disability. Therefore the child is not being hurt by this

Bogus logic. The insensate most certainly can be harmed. That they may not perceive it as such does not change what it is.
posted by NortonDC at 6:48 PM on April 4, 2002


The racial analogies are bogus. The fact of the matter is that deaf people can't hear. I hope to God there is no one on MetaFilter that believes that people of other races have any basic differences like that as to what they're able to do.

What would be wrong with having a hearing child but teaching it ASL, and letting it learn English in school? That child would be able to communicate in all functional respects with its parents' community, but would be without the genuine, physical disadvantages that deafness brings. It would be functionally bilingual and able to switch cultures, like an American child born to immigrant parents. Not wanting a hearing child would be like preventing a Chinese child living in the United States from learning English (which would be a difficult task, but assume for the sake of example that you could do that).
posted by dagnyscott at 8:36 PM on April 4, 2002


Dwivian, looks like you spoke a bit too soon about that civility thing...

Couldn't resist checking in one last time before bed. So a quick round-up for those of you hanging on my every word ;) NortonDC: calm down, buddy; even if you're right, you're not going to catch any flies with that vinegar. Monkey-mind: all vinegar aside, you are repeating arguments that have been made and discussed pretty exhaustively already. Sounds like you've got some first-hand (well, second-hand) experience to contribute to the discussion, which is great, but do we have to start over from square one? Mdn: Sorry, I still don't buy it. The parents are making their choices before the child exists, and those choices will affect the child when it does exist, whichever hypothetical "version" of him ends up being born. I think the child could quite reasonably hold it against his parents even if, philosophically speaking, he would've been a different "him" had they made different choices. Rory: I join you wholeheartedly in backing away carefully from the whole question of at what point a gleam in someone's eye is transformed into an inviolable human soul... and leave the rest till morning.
posted by ook at 9:00 PM on April 4, 2002


I've been sitting out most of this debate because some smart people on both sides of the debate are being more eloquent than I would be, however I'll say one last thing. For those who are saying deafness isn't a handicap if deaf people don't consider it one and aren't convinced by NortonDC's flat statement that it is one, consider the following: If there was absolutely no discrimination against deaf people and the rest of society knew signing, so communication wasn't a problem, a deaf person could still not be a pilot, an astronaut, a policeman, an air traffic controller, an ambulance dispatcher, a piano player, a recording engineer, or even a secretary if it involved answering phones. (On the plus side, he can't be a telemarketer either.) If he steps in front of a moving bus by accident, he can't hear the driver honking or the bystanders shouting to warn him. You can't say the same thing about any racial, religious or ethnic group. Deafness, like any disability, doesn't diminish the worth of an individual or mean that he or she can't accomplish great things. It does mean that some life choices are eliminated and others become much harder. It does not replace them with new choices which are unavailable for the non-disabled. A hearing kid can learn to sign fluently, and in this household, probably would.

mdn - I get your distinction about "choosing which child to being into being." That distinction is part of why I can't decide how I feel about the morality of this couple's choice.
posted by tdismukes at 9:15 PM on April 4, 2002


whichever hypothetical "version" of him ends up being born.

don't mean to beat this to death, but it's not a "version" of someone, it's a different individual - it's different dna. I guess maybe this extends into religion or something, if you believe there's a soul that just "inhabits" the body, but from a scientific perspective, the two cannot be equated or thought to be different versions of one another. They are utterly distinct.

As for whether it's a disability, that seems to depend on majority abilities - if most people had dolphine sonar vision or whatever, those of us without it would be considered disabled, since society would be set up to make use of that standard ability. So I think we can say yes, being deaf is being disabled in the larger culture. Creating a smaller culture where it's not an expected ability is one solution to this but it is segregative, and personally I find it hard to relate to the disinterest in acquiring an additional mode of experiencing the world.

If most people had some other 6th sense, I'd think I'd be excited to gain it, and would not structure my identity around my lack of it. On the other hand, I do fine with the senses I have so maybe if it were a complicated procedure etc, I wouldn't be particularly inclined to go through all that for something that would seem to me to be an "extra" sense . Maybe I'd be concerned it would complicate my perceptions or sort of wash out the intensity of them by crowding the room.
posted by mdn at 10:20 PM on April 4, 2002


The best analogy I can think of that applies here is that of gay people. The majority of deaf children are born to hearning parents, just as most gay people have straight parents.
There are people who will argue till the cows come home that homosexuality is a defect, inherently wrong, gay people are obviously "broken" etc etc etc, which are the exact same arguments I am seeing here against deaf people.
To suggest that "breeding deafness" is abhorrent is just as offensive as accusing gay parents of trying to breed more gays. There was a time in the not too distant past when deaf people were forcibly sterilized in an attempt to keep them from "breeding". I don't see any difference between being horrified that a deaf woman has requested a deaf sperm donor and that a deaf person has married another deaf person and plans to have children. As several people have pointed out, 80% of children born to deaf parents are hearing. The majority of deaf children are born to hearing parents. Preventing deaf people from reproducing is NOT the answer to obliterating deafness-- and I don't think obliterating deafness is even a desirable outcome.
Understanding cultures that vary from our own is always difficult or impossible. Don't condescend to know what's best for a culture besides your own.
posted by bonheur at 11:13 PM on April 4, 2002


[NortonDC:] Bogus logic. The insensate most certainly can be harmed.

But the nonexistent can't.

Race is not a defect. Lacking hearing is a major sensory defect.

Okay, so lacking hearing is a lack, but I lack a womb and therefore can't share the child-bearing experiences of half the population of the planet; does that make me 'defective'? What one considers 'defective' in terms of being a functioning human being is a subjective judgement, not some absolute objective truth; from nature's point of view, we're just a bag of cohabiting cells. If evolution came up with a variant human being with some extra super-sense that we can't imagine or understand, those variant humans would consider us defective; would that make us so?

As for the race analogies, the point is the cultures surrounding different races, not the races themselves -- there's a big difference. And some here are arguing -- I'm one of them, obviously -- that in some cases one's culture can be considered more important than the possession of a particular sense. Take away my hearing, and I will still function; take away my cultural identity, and I will no longer be me. Reducing this all to simple biology and absolute statements about 'hearing Good, not hearing Bad' ignores much of what makes us human. So do comments about 'brewing up a bouncing baby signer'; sign is a language, and many would argue that language is what makes us human (in the sense of being more than our biology, and different from other animals); and the specific language that we speak as our native tongue is an integral part of our identity. If you don't believe that, go to Cardiff and try telling the nearest Welsh-speaker that they shouldn't attempt to brew up a 'bouncing baby Welsh-speaker', and see how far you get.

And as for your comments about these women being 'despicable' practicers of 'dysgenics': these women are choosing a mate, not practicing eugenics. Yes, it is obviously an example of 'selective breeding'. But eugenics was -- is -- about more than selective breeding (which humans have been practicing forever, or else we would all be coffee-coloured), it's also about actively preventing supposedly 'inferior' types from breeding -- for example, by forced sterilisation, or prohibiting certain forms of marriage.

That's something I find despicable, and that's why I think these women should be allowed to breed with whichever consenting adult they see fit.
posted by rory at 1:27 AM on April 5, 2002


(Apart from members of their immediate family.)
posted by rory at 1:31 AM on April 5, 2002


mdn - don't mean to beat this to death, but it's not a "version" of someone, it's a different individual - it's different dna.

So identical twins are the same person? Is that why they share a vote?

bonheur - The best analogy I can think of that applies here is that of gay people. The majority of deaf children are born to hearning parents, just as most gay people have straight parents.

Bullshit. Gay people do not lack sexual attraction. The deaf lack hearing.

As several people have pointed out, 80% of children born to deaf parents are hearing.

Wrong. Nobody has made any such assertion in here prior to your misstatement.

rory
>[NortonDC:] Bogus logic. The insensate most certainly can be harmed.
>
But the nonexistent can't.


Complete nonsequitor, nothing contributed.

Okay, so lacking hearing is a lack, but I lack a womb and therefore can't share the child-bearing experiences of half the population of the planet; does that make me 'defective'?

No, because gender is still not a defect. It probably still won't be next time someone asks, either.

Take away my hearing, and I will still function; take away my cultural identity, and I will no longer be me.

It's good to see you ackowledge that sensory defects do not define culture. Now I'm just wondering how long it will take for that understanding to enlighten the rest of your thinking.

sign is a language, and many would argue that language is what makes us human

Yes, sign is a language. No, deaf is not. Part of what you are missing is that whatever child they raise will be a signer, hearing or not.

And as for your comments about these women being 'despicable' practicers of 'dysgenics'

I called their acts despicable. Good people can do horrific things. This may be a prime example.

That's something I find despicable, and that's why I think these women should be allowed to breed with whichever consenting adult they see fit... [a]part from members of their immediate family.

Gee, why? Perhaps because of the increased risk of birth defects? Wake up! That is exactly what we are talking about. These women are aiming to produce a child with profound birth defects.

And, yes, that is despicable.
posted by NortonDC at 4:59 AM on April 5, 2002


biscotti: what are the words and what do they have to do with Hitler?

Those are the words of the most Perfect Country Song. It's a cute story by a songwriter that claims that he was attempting to write a perfect song, when another songwriter said "but you left out trucks, your Mama, jail, being drunk, rain, trains...."

So, he added the verse: "I was drunk the day Mom got out of prison/so I went to pick her up in the rain/but before I could get to the station in my pickup truck/she got run over by a damned old train." Song title is: You Never Even Called Me By My Name, Written By Steve Goodman, As Recorded By David Allan Coe.

What it has to do with Hitler, is wondering if this FPP is complete yet... We haven't had pancakes, politics, ponies, or ..er....Nazi doesn't start with "P", dammit.
posted by dwivian at 6:38 AM on April 5, 2002


NortonDC:

The insensate most certainly can be harmed.
[me:] But the nonexistent can't.
[NDC:] Complete nonsequitor, nothing contributed.


It's not a non sequitur when 'harming a child' is being attributed by various people here to a mere attempt to conceive a child that does not yet exist.

No, because gender is still not a defect. It probably still won't be next time someone asks, either.

Yes, it was a rhetorical question. Your answer doesn't address the main point in that paragraph, though.

It's good to see you ackowledge that sensory defects do not define culture.

'Sensory defects do not define culture'? Sure, and yeast doesn't define bread. But it helps make certain kinds of it.

Now I'm just wondering how long it will take for that understanding to enlighten the rest of your thinking.

Since I don't share your understanding, for example your intractable definition of 'defect' in this instance, it will be some time before I achieve that particular form of enlightenment.

Yes, sign is a language. No, deaf is not. Part of what you are missing is that whatever child they raise will be a signer, hearing or not.

(Why do you presume that I am 'missing' this? I just haven't chosen to explore that angle.)

I called their acts despicable. Good people can do horrific things.

Okay, fair distinction.

[me:] Apart from members of their immediate family.
[NDC:] Gee, why? Perhaps because of the increased risk of birth defects?


Not particularly. More because I've been raised in a culture with strong taboos against incest, to the point where even the thought of genetically-unrelated adoptive relatives having kids together is unsettling. The increased risk of birth defects in any particular case, as another thread is discussing, is no worse in some kinds of relationships that we define as 'incestuous' than in some non-incestuous relationships that we consider okay. But for a population as a whole, the increased risks of allowing certain types of pairings may be considered too great, which is some explanation for the incest taboo. There are many more siblings and other close relatives around than there are deaf people, so the incest taboo makes a big difference in absolute terms in reducing overall numbers of birth defects, whereas prohibiting other less-likely kinds of pairings wouldn't. The cultural taboos and consequent laws against incest make sense for the group, but not necessarily as much sense for individuals: cumulative probability versus one-off probability.

Some people might think that society's desire to keep total numbers of birth defects below a certain level (five percent of the population, say) requires intolerance of any activity that might lead to birth defects. That way lies mass genetic screening. But there's no contradiction between keeping numbers of birth defects low in a whole population and allowing couplings with a higher risk of birth defects in small minorities in that population. It's straight probability and statistics. If a tiny percentage of the population has twice or twenty times the chance of winning the lottery of everybody else, it doesn't mean we're about to be overrun by millionaires. But allowing incest would be different: the majority of people in society would have the potential for an incestuous relationship, and the risks to society of greater numbers of birth defects than it can comfortably cope with would be far greater.

These women are aiming to produce a child with profound birth defects.

That is indeed 'exactly what we are talking about': you believe this is what they are doing; they don't. Since you don't acknowledge that the concept of 'defectiveness' is culturally-defined, and that the problems some people have with this case stems from conflicting cultural conceptions of what makes a happy, functioning human being, the argument is going nowhere fast.
posted by rory at 6:59 AM on April 5, 2002


[mdn] don't mean to beat this to death, but it's not a "version" of someone, it's a different individual - it's different dna.

Let's just rough it up a little more and send it on its way. :)

I'm thinking of this less in terms of religion than in terms of schroedinger's cat. (Believe me, I'm the last person in the world who'd want to drag religion into it.) They're making the choice before there is a child, so that choice is going to affect any potential child they may have, whichever "identity" / "soul" / whatever you want to call it ends up inhabiting it.

If they're basing the choice on the logic that they're choosing from an array of different children, then that logic could be used to justify anything, however horribly deformed and inbred: at least he got the chance to live, and the "other kids" who might've been healthier didn't. The mad scientists with their rayguns could also use the same logic: this nineteen-legged baby, this particular combination of DNA we created, sure it's evil and just ate Albuquerque, but it wouldn't have had the chance to be alive if we hadn't stepped in...

Philosophically speaking, you might well be absolutely right; choosing a different mate may be the same as choosing a different child, in absolute terms. But pragmatically, at the point that these parents are making their choice, I think they have to deal with it in terms of an unopened schroedinger's box: there's a potential child of many possibilities, perhaps with many possible identities. And when we make it real, it's going to have to deal with the manner in which we make our choice. So even if everything you're saying is true, I still don't think that absolves them of the responsibility to make that choice, well, responsibly.

Dwivian: I think the word you're looking for is "pfascist."
posted by ook at 7:25 AM on April 5, 2002


rory - "..conflicting cultural conceptions of what makes a happy, functioning human being.."

Not that I think I'm likely to bring you and NortonDC into agreement, but I should point out that "happy, functioning human being" and "disabled/handicapped" are not necessarily contradictory terms. Stephen Hawking is certainly a functional human being in that his life accomplishments are as great as anybody's. For all I know, he may also be a cheerful, happy guy. He's also handicapped - by which I mean that certain life directions have been closed off to him and even the path he's taken has doubtless required much more work than would have been required if he wasn't dealing with a disability. That's all "disabled" means - that you've had certain things closed off to you and/or other things become much more difficult, without having a corresponding advantage handed to you in some other life path. It doesn't mean that you have less intrinsic worth or dignity or that you can't become the best in the world in some life path that isn't closed off to you. It's just a practical disadvantage in certain areas of life. If anyone is arguing with NortonDC thinking that (s)he's saying a deaf person can't be a happy, functioning human being, you're probably arguing at cross-purposes. (Not to presume to speak for you, NortonDC - I just didn't think that was what you're trying to say.)
posted by tdismukes at 7:51 AM on April 5, 2002


"happy, functioning human being" and "disabled/handicapped" are not necessarily contradictory terms.

My point precisely, tdismukes. But perhaps I am arguing at cross purposes. I was inferring from NortonDC's description of the attempt to conceive a deaf child as 'despicable' that he thinks that such a child would necessarily be incapable of functioning adequately in normal society and would most likely be unhappy with his or her lot as a result. If he doesn't think that, I'm not sure why he'd describe such an attempt as 'despicable', a word that rates pretty highly on the harshometer. NortonDC?
posted by rory at 8:04 AM on April 5, 2002


rory: but I lack a womb [...] does that make me 'defective'?

It makes you a defective female, yes. But, since you couldn't have possibly been a female, this shouldn't trouble you much. Deafness is different -- there was a possibility (and, in fact, actually happened) that this child could have been born with some hearing. The defect of deafness is one that could be overcome, or lessened, and is marginally treatable at this point in the child's life. The parents are intentionally NOT treating it, because they don't see deafness as a problem, and because it will "cost too much."

(After having a steel pin put into my cat because of a broken shoulder, I just don't understand how treatment of a loved one can "cost too much".)

I think that those of us without deafness see the Culture as more of a support group, while those within it see it as a way of life. Kinda like inviting your entire AA group to live with you. Does that seem a valid point?
posted by dwivian at 8:17 AM on April 5, 2002


there was a possibility ... that this child could have been born with some hearing

No, there's the possibility that some other child could have been born with some hearing; see mdn's point above, with which I agree.

I think that those of us without deafness see the Culture as more of a support group, while those within it see it as a way of life.... Does that seem a valid point?

Replace 'those of us' with 'some of us', and yes, it would appear so.

I really would encourage anyone who has read all 25,000 words of this thread and hasn't read Seeing Voices to track down a copy.
posted by rory at 8:28 AM on April 5, 2002


(Sorry, obviously Gauvin was born with some hearing; what I meant was that having the potential beforehand for a deaf child or a hearing child doesn't mean that the child, once born, would be the same child either way, plus or minus hearing. The same point I made way back about disentangling oneself.)
posted by rory at 8:37 AM on April 5, 2002


rory - While I can't speak for NortonDC (and he/she does use much stronger language than I would), I can certainly understand anyone who has serious qualms about pre-emptively imposing serious practical disadvantages on a child, even if it didn't mean the child would necessarily be unhappy or incapable of functioning. What if the kid had a natural dream of being a cop or an airline pilot? Sorry, kid. Of course, the kid might want to be a computer programmer like me & could do great. The problem is, you can't know in advance and it seems strange to want to limit your child's choices.

The other arguments on both sides are being handled better by other people, so I'll shut up now.

(On preview - I haven't read Seeing Voices, but I think Oliver Sacks is a fascinating writer, so I may have to find a copy.)
posted by tdismukes at 8:39 AM on April 5, 2002


rory: my point, exactly. Gauvin was born with some hearing, but his parents aren't exploiting that -- they are deciding not to give him any chance to learn to hear well, because it is too expensive, and they wanted a deaf child anyway. This bothers me almost as much as breeding for deafness.

Thanks for good contributions!
posted by dwivian at 10:53 AM on April 5, 2002


So identical twins are the same person? Is that why they share a vote? (NortonDC)

okay, one point for you. My mom is an identical twin, so I shoulda thought of that. But their dna splits in the first few weeks, and as different matter, different cells, they grow into different consciousnesses.

But your point only strengthens mine: even identical dna can become two different people. There's no way that two different dna's will become one person. Each individual organization of matter is a distinct person. You won't be making a hearing child deaf. You're only choosing to create the deaf child instead of a normal one.

then that logic could be used to justify anything, however horribly deformed and inbred: at least he got the chance to live, and the "other kids" who might've been healthier didn't (ook)

Well, I think it depends on whether you think those lives are worth living, or if there's a point at which it they're not. It's kind of hard to say a life isn't worth bringing into the world except in cases of serious disease & mental retardation. But I certainly wouldn't hope for any defects, by which i mean any lack of basic assumed abilities that I have. A deaf person who is happy to be living is not going to be upset by the lack of hearing in a child, but I would be. I guess people would think it was terrible for hearing parents to give up children for adoption just because they're deaf, but if there are deaf couples out there who hope for deaf children, maybe that would be a good solution, especially if it were an open adoption.

The more I think about my example of the extra 6th senes, I realize if that were the case I would never hope for a child who shared my inability if most of the world had the ability.
posted by mdn at 8:27 PM on April 5, 2002


mdn - The deaf child will most likely have the same feelings about being deaf that so many deaf people have, and that the parents have, in that they don't consider it a disability. Therefore the child is not being hurt by this
NortonDC - Bogus logic. The insensate most certainly can be harmed. That they may not perceive it as such does not change what it is.
rory - But the nonexistent can't.
NortonDC - Complete nonsequitor, nothing contributed.
rory - It's not a non sequitur when 'harming a child' is being attributed by various people here to a mere attempt to conceive a child that does not yet exist.

rory, mdn and I are discussing perception versus reality. I don't know what the hell your comments have to do with that.

NortonDC - No, because gender is still not a defect. It probably still won't be next time someone asks, either.
rory - Yes, it was a rhetorical question. Your answer doesn't address the main point in that paragraph, though.

Then ask the question without the bullshit distractions.

NortonDC - Yes, sign is a language. No, deaf is not. Part of what you are missing is that whatever child they raise will be a signer, hearing or not.
rory - (Why do you presume that I am 'missing' this? I just haven't chosen to explore that angle.)

Because your harping on language and culture only makes sense when operating under the delusion that ASL is available only to those with broken hearing.

rory - That way lies mass genetic screening.

You seem to be opposed to screening in general, but supporting it when used to select for birth defects. That is mind-bogglingly perverse.

the concept of 'defectiveness' is culturally-defined

Culture does not determine that they have a sensory defect. Their hearing is defective. They endeavored to produce another generation born with defective hearing, born with birth defects. These are incontrovertable facts.

tdismukes - What you said.

rory - I was inferring from NortonDC's description of the attempt to conceive a deaf child as 'despicable' that he thinks that such a child would necessarily be incapable of functioning adequately in normal society and would most likely be unhappy with his or her lot as a result.

Completely unfounded.

If he doesn't think that, I'm not sure why he'd describe such an attempt as 'despicable'

Because it is a parent trying to limit their child , because it is trying to breed for birth defects, and because it is exclusionary thinking distilled into life-long biology. For starters.
posted by NortonDC at 9:05 AM on April 6, 2002


Deaf people by circumstance of their disability have their own language. Deafness as a disability is unique in that it creates a culture through fluent use of its language by large groups over time. When separated semantically, the words disability, deafness, language and culture have different meanings and thus are not the same thing. But in reality, on even a small scale these things are inextricably linked. While it may seem that 'disability is culture' is a stretch and in other cases it would be, in this one it is not. Deaf culture has only reached critical mass within the last 25 years. Deaf people are currently experiencing one of the most important times in their history. Big-D Deaf? You bet your ass.
posted by yonderboy at 10:09 AM on April 6, 2002


NortonDC, do you have to be so ornery all the time? I'm trying to do you the courtesy of responding to your substantive points, but it's hard to focus on them when you keep using irritable language.

Because your harping on language and culture only makes sense when operating under the delusion that ASL is available only to those with broken hearing.

There's a difference between being a native speaker and having a second language, and a difference between being monolingual and being bilingual, and the difference is in the way our views of the world are formed. The kids of Greek migrants in Australia often speak Greek from childhood, but they don't necessarily share their parents' Greek-cultured world-view. That's what these deaf parents are seeking: the deaf-culture world-view that goes with being a monolingual deaf ASL signer. Personally, I wouldn't make that choice: I'm all for multilingualism and breadth of experience. But as I've already said here, I find it hard to think myself into their shoes when it comes to these specific choices, because their circumstances are so far removed from mine: all I'm saying is that I can see why they might want to choose in ways different from how I and other non-deaf people would, because I value my own culture highly and would do my best to pass it on to my children.

Completely unfounded.

Sorry for inferring it, then. But...

You seem to be opposed to screening in general, but supporting it when used to select for birth defects. That is mind-bogglingly perverse.

Who's making assumptions now? I haven't said anything here about whether I support or oppose selective genetic screening. The whole point about this case is that genetic screening doesn't even come into it: it's selective breeding of a kind that can be practiced without any recourse to science. That's one reason why it's so interesting: if simple selective breeding can raise such profound qualms in so many onlookers, imagine how much more complicated the moral debates will get when genetic screening is more widely practiced.

Culture does not determine that they have a sensory defect. Their hearing is defective. They endeavored to produce another generation born with defective hearing, born with birth defects. These are incontrovertable facts.

I'm trying to get at the difference between a defect, incontrovertibly and uncontroversially defined as a sense or an organ that doesn't work, and the culturally-defined concept of defectiveness. In other words, just because I have a defect doesn't necessarily mean that others will consider me 'defective', to the point where that defines me in their eyes. Whether they do or not depends on what their cultural and personal value systems consider 'defective'. 'You have defect X, but everybody has defects of some kind, you're just normal', or 'You have defect Y, and therefore you are a defective human being'. It's like the difference between a doctor pointing out that someone is mentally retarded in the medical sense, and an obnoxious school-kid calling them 'retarrrrded'.

Because it is a parent trying to limit their child

They fuck you up, your mum and dad.
They may not mean to, but they do.
They fill you with the faults they had
And add some extra, just for you.

--Philip Larkin.
posted by rory at 6:13 AM on April 7, 2002


rory - NortonDC, do you have to be so ornery all the time?

No, but I will not pull punches regarding people purposely inflicting birth defects on children.

That's what these deaf parents are seeking: the deaf-culture world-view that goes with being a monolingual deaf ASL signer.

Every part of that except "deaf" is available without practicing dysgenics to create a child with a major sensory defect. It is all possible.

Everything that makes it unlikely is an argument against breeding for a child lacking hearing.

I haven't said anything here about whether I support or oppose selective genetic screening.

Supporting the breeding practices of these women is supporting genetic screening for the purpose bearing a child with birth defects.

The whole point about this case is that genetic screening doesn't even come into it: it's selective breeding of a kind that can be practiced without any recourse to science.

Bzzt, wrong. Selective breeding is genetic screening. Suzuki and Knudson define genetic screening as "the examination of the genetic constitution of an individual - whether a fetus, a young child or a mature adult - in search of clues to the likelihood that this person will develop or transmit a heritable defect or disease" in Genethics. These women are screening on phenotype, just like Mendel did to establish the science. Have no illusions, rory.

just because I have a defect doesn't necessarily mean that others will consider me 'defective', to the point where that defines me in their eyes.

I am not the one to preach to about this. Save it for those labelling thousands of people and their creative output as "Deaf."
posted by NortonDC at 8:25 PM on April 7, 2002


Anyone else want to chime in?
posted by yonderboy at 1:37 PM on April 8, 2002


Check WP's comment page.
posted by yonderboy at 1:56 AM on April 13, 2002


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