April 3, 2002

8:02 AM

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

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

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

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

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

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

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

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

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

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