Woman with osteogenesis imperfecta delivers baby
February 11, 2006 6:02 PM   Subscribe

Eloysa Vasquez, a 37-pound woman with osteogenesis imperfecta (the "brittle bone disease"), has given birth to a premature, but otherwise healthy, son. OI is the disease affecting the actor Michael J. Anderson, most famous for his roles as "The Little Man from Another Place" in Twin Peaks and Samson in Carnivale. Children with OI experience so many broken bones that their parents are frequently suspected of child abuse.
posted by feathermeat (56 comments total)
 
Mothers, actors, intergalactic mercenaries...
posted by hob at 6:19 PM on February 11, 2006


Yay!

An ex's sister had OI. We're long out of touch, but I know she wanted to have children - I hope this brings her a step closer (as it were).
posted by kalimac at 6:27 PM on February 11, 2006


I knew someone in high school that had a less serious form of OI.

And by less serious, I mean that she didn't break a bone every time she tripped on something, only most times. Damn, that's a nasty disease.
posted by Dipsomaniac at 7:17 PM on February 11, 2006


Why are people so desperate to give birth? It seems so selfish to risk passing on a debilitating genetic condition to your child because you are too proud to adopt.
posted by apple scruff at 7:17 PM on February 11, 2006


Jazz pianist Michel Petrucciani was also born with OI, though it did not affect his hands and fingers. He was a wonderful musician who died far too young at the age of 36 in 1999.
posted by LinnTate at 7:24 PM on February 11, 2006


Why are people so desperate to give birth? It seems so selfish to risk passing on a debilitating genetic condition to your child because you are too proud to adopt.
posted by apple scruff at 7:17 PM PST on February 11 [!]


Many women (maybe not you, but many) feel and have felt their whole lives that biological motherhood - not just having a child but the indescribable journey and singularly unique bonding experience of coming to know a child growing within your own body - is part of living a fully realized life. Having parented my own children (2) and the child of another mother, the ability to love all children is inexaustable, but the unique and precious experience of knowing one's own child through gestation, well - to many it would be a grievous loss to forego that experience. That said, there are many disorders that - were I diagnosed prior to having children - would have kept me from having children for fear of passing along the disorder.
posted by onegreeneye at 7:35 PM on February 11, 2006


Petrucciani was, indeed, wonderful.

One of the most poignant things I've ever seen was the great jazz musician Charles Lloyd carrying Michel like a child in his arms to a table at Greens Restaurant in San Francisco. I waited on them. That was long time ago.
posted by digaman at 7:35 PM on February 11, 2006


That's a great story, digaman. Thank you.

I recall seeing a photograph, I think in the late 80s, of one of Petrucciani's fellow musicians (I don't believe it was Lloyd) holding him in the way you describe at the end of a concert. I thought then that's an awfully vulnerable position for an adult to be in, but was struck with the degree to which it seemed so comfortable for both musicians.

I've never encountered anybody who knew Petrucciani personally outside of interviews, but those accounts indicate a man who was held in truly high esteem by his peers.
posted by LinnTate at 8:06 PM on February 11, 2006


OI is one of those things that is so under the radar. My friend Richard died from OI related complications about six years ago. He was fifty-something and owned ten acres on a West Virginia mountaintop that he had to work his ass off to get. He couldn’t walk, so he used a little riding mower to get from plant to plant in his organic garden.

When I first met him, just out of high school, he was OK. A few years later he brought me in to a hippie artists commune where he was the top dog on account of the fact that he was the only one who was willing and able to take responsibility for everything. By then he was pretty skinny and couldn’t really walk right... but he had an enormous dick... so he took all the doors of the bathrooms (which was OK{except for pimple popping Igor})... and we all got naked as much as possible... which was great... especially for Richard.

Since then I’ve met some borderline OI people. They break a lot of bones and the whites of their eyes have a blue tint.
posted by Huplescat at 8:45 PM on February 11, 2006


biological motherhood - not just having a child but the indescribable journey and singularly unique bonding experience of coming to know a child growing within your own body - is part of living a fully realized life.

I understand that pregnancy can be a magical thing, but it is society's obsession with it and the idea that as a woman you are incomplete unless you give birth and that kind of cultural conditioning that drove Eloysa Vasquez to jeopardize her own life as well as the life of her unborn child. Not to mention all these glowing stories in the aftermath of this, reinforcing the idea that women should push the boundaries of good health and medical advice in order to give birth.
posted by apple scruff at 9:03 PM on February 11, 2006


This is nothing to be proud of. Its reckless.

Totally agreed. This is nuts. I don't think anyone is rah-rah eugenics, but come on -- how many Chinese girls are out there with nothing to look forward to except a Nike factory?
posted by frogan at 9:59 PM on February 11, 2006


Welcome onegreeneye to the wonderful world of Metafilter! I thought your post showed remarkable eloquence and restraint. You could have snarked it up, as others have done. There are few areas on Metafilter that are as black and white as this nerve you just seemed to have touched.
Just to give to give you fair warning, don't mention obesity in any way that could be construed as compassionate, don't write eloquently about your religious belief, oh, and don't post about Portabello mushrooms.
Your post was a breath of fresh air and I have duly flagged it!
posted by Wilder at 3:46 AM on February 12, 2006


I don't think anyone is rah-rah eugenics

In fact, the real "eugenicists" here are the people who think their genes are so damn important that they just have to have a "natural" child to feel happy or complete, instead of, oh, say adopting one of thousands of black children who are growing up, in wildly disproportionate numbers, in depressing foster homes because they can't find homes.

This shit makes me sick.
posted by dgaicun at 6:50 AM on February 12, 2006


This puts the term 'safe sex' into a whole new realm.

Could you possibly break a hip... doing it?
posted by nearo at 10:29 AM on February 12, 2006


I understand that pregnancy can be a magical thing, but it is society's obsession with it and the idea that as a woman you are incomplete unless you give birth and that kind of cultural conditioning that drove Eloysa Vasquez to jeopardize her own life as well as the life of her unborn child. Not to mention all these glowing stories in the aftermath of this, reinforcing the idea that women should push the boundaries of good health and medical advice in order to give birth.

Amen. There is also the future of the children to be taken into consideration. It's all well and good to feel that you must carry a child inside you to feel "realized", but when we're talking about someone who is quite likely to die long before her son has grown up, and whose son has a 50% chance of inheriting the disorder, I think it's reasonable to think that sometimes reproduction for its own sake isn't intrinsically noble.
posted by biscotti at 11:09 AM on February 12, 2006


Bloody hell, I can't believe some of the comments here. She had a child that she wanted to have. You make it sound like she killed someone.
posted by funambulist at 11:19 AM on February 12, 2006


You make it sound like she killed someone.

The point is that she could have, by passing on a life-threatening disease to a child. She could have also very easily killed herself in the process as well.
posted by apple scruff at 12:05 PM on February 12, 2006


...I understand that pregnancy can be a magical thing, but it is society's obsession with it and the idea that as a woman you are incomplete unless you give birth and that kind of cultural conditioning..."
posted by apple scruff more than 12 hours ago


Which society? Which culture? I've lived and worked in 3 countries, visited 11, and have yet to find one in which women spanning all economic classes are not doing some seemingly crazy stuff to become pregnant. Having parented my own biological children and 1 born to another woman, I think it would be simplistic to blame my society or culture for my maternal desires in either case. (What's the male equivalent to that blanket judgment?) Prior to becoming pregnant, I was inundated with options other than pregnancy by both doctors and family. Heck, I live in a neighborhood where double income, 1 adopted asian girl child family status is nearly a requirement for residency. Lastly, has anyone considered the father's desire for a child in this case, or is the woman the sole recipient of the tongue lashing?
posted by onegreeneye at 12:09 PM on February 12, 2006


Thanks Wilder! No obesity, religion or mushrooms. Check.
posted by onegreeneye at 12:16 PM on February 12, 2006


apple scruff: yes, I understand that, and those risks are there in many other cases too, but the point, in my own view, is simply that she is a grown woman, she wanted to have a baby, she did, she's happy, the child is fine, it does not appear she is mistreating this child or doing any harm, so... it's her own business.

The old thing about choice, it doesn't enter the field only when it's about abortion, it's about wanted pregnancies too. So I just don't see why the compelling need to judge from the outside. I'm not in her shoes, I don't know her, I'm not a mind reader. Has she been brainwashed by the great motherhood conspiracy? Well, then, haven't all mothers?

I'm not saying this because I believe women are not fully realised unless they have children - I don't believe that, it's an individual matter - but because it's clear this woman did want a child. Why should I assume it wasn't a genuine desire?

And why is that a problem to anyone else, when it isn't a problem for her, her partner and their child?
posted by funambulist at 12:34 PM on February 12, 2006


I'm not assuming that she didn't genuinely desire a child, and I'm happy for her if she feels fulfilled by this. In a more general sense, I just think that sometimes we view motherhood as some kind of be all and end all of being female, and that there are other ways of looking at things, especially in cases like this, where having the baby is probably the least important aspect of the whole situation. Sometimes people get so hung up on having a baby that they forget about the parenting, or the person that baby will become, or whether they are really considering the whole picture.
posted by biscotti at 12:57 PM on February 12, 2006


This thread is like a logic toilet.

Bloody hell, I can't believe some of the comments here. She had a child that she wanted to have.

Well QE fekkin D. The drunk driver was just doing what he wanted to. What's the big deal? The guy cheated on his wife with his secretary. It made him feel good, what's the big deal?

See we condemn the drunk driver because his actions had no compelling justification and were extremely potentially harmful to others. Taking a cab may seem like a bitch to him, a waste of time and money, but to the rest of us, the high probability that he will seriously injure or even kill someone make this small "sacrifice" on his part an urgent necessity. So urgent in fact we make it law that he can't do so.

Take the second example. Here we make a similar judgement, but to a lesser degree. We think the husband's "need" to shag his secretary, isn't worth the potential emotional hurt of his wife being lied to and cheated on. On the other hand, we don't make a law in this case because we judge the injury much smaller than in the first scenario, and, more importantly, we also feel that the enforcement necessary would be too extreme an encroachment on basic liberties. A judgment we did not make in the case of the drunk driver.

On an ethical level I would put this woman's "need" to and decision to give birth on an ethical level much closer to the drunk driver; the high likelihood of her causing pain, suffering, and/or death to herself and/or others is high. And her "need" to have a child is likewise comparable in justification to the drunk person's "need" to avoid the inconvenience of a cab ride home and to his car in the morning. The psychological literature certainly doesn't show that adoptive mothers are less fulfilled than biological mothers. In fact, adoptive relationships are often more emotionally intense, due to a mutual sense of saving a life - contradicting all this mystical fluff about adoption being emotionally "inferior" to baby birthing.

But in terms of enforcement this is much more like the adultery scenario. There really are few ways of legally preventing a woman from having a baby (or a man from having extramarital sex), that don't trample basic rights. Certainly sterilization and other such methods are still barbaric. But I might be open to the state claiming any such babies, like we do with e.g. abusive parents, which might sap all incentive to carry through with these kinds of births. This would really depend on how effective the threat was. If it managed to stop, say, 95% of the births that would have happened otherwise, I would say it was worthwhile. On the other hand, if most of the births happened anyway (as I imagine would be the case with Down's Syndrome-like births, where incentives are mostly irrelevant to the "decision"), it wouldn't be worth it.

the old thing about choice, it doesn't enter the field only when it's about abortion, it's about wanted pregnancies too. So I just don't see why the compelling need to judge from the outside.

Actually, abortion isn't about some nebulous value of "choice" (whatever that means), but about ethical questions of where life begins and the states right to interfere with womens' bodies. In the first case it's doubtful that a fetus is human (something that contradicts all this fluff about "coming to know a child growing within your own body" and such in this thread, by the way), which makes it an ethically neutral act, giving no justification for its legal prevention. In the second case, even if abortion was wrong, like adultery, there doesn't seem to be a legal way to prevent it that doesn't trample a number of liberties.

By the way, acts that are wrong that we can't legally prevent (like adultery) demand more social methods of prevention, like guilt and shame, not less.

This is the reason the women in this story deserves nothing but contempt. The less we feel we can or should stop her legally, the more contempt it becomes necessary we send her way, as an incentive for other women in similar situations to not make such choices.
posted by dgaicun at 1:53 PM on February 12, 2006


Er, "woman in this story. . . "
posted by dgaicun at 1:58 PM on February 12, 2006


the point, in my own view, is simply that she is a grown woman, she wanted to have a baby, she did, she's happy, the child is fine, it does not appear she is mistreating this child or doing any harm, so... it's her own business

Okay. But all that means is that we shouldn't use the law to forcibly prevent her from becoming pregnant. It certainly doesn't mean that people who disapprove, for whatever reason, should refrain from criticizing her choice.

It would be rude and churlish to shout it at her face, or picket her house, but we're just discussing it here in her absence, doing her no harm. Unless she reads metafilter, in which case the criticism she's receiving here is fairly mild for this place and should hardly be surprising to hear.
posted by ROU_Xenophobe at 2:00 PM on February 12, 2006


dgaicun: please note I commented on this one particular story, saying I dislike the quickfire judgemental attitudes towards this woman and her situation and her choice. You just cannot infer from that that I believe there can be no morals, no opinion or no judgement at all on anything, including crimes, because that'd be crazy and I implied no such thing.

On an ethical level I would put this woman's "need" to and decision to give birth on an ethical level much closer to the drunk driver

Ok, see, we disagree. In fact, I find that view repulsive. Yes, I perfectly understand some people think it's very very wrong for a disabled person or with a condition that might be hereditary or a woman who has particular risks during pregnancy to even think about having a baby with all those risks and so on. I remember very similar reactions from a previous thread about that woman who had the anacephalic twin. I remember the very same "how irresponsible of her!" attitude, even about the child with cerebral palsy (who as someone pointed out, is not even screenable in pregnancy). And I don't like that attitude. Maybe, seen the reactions the first time round, I shouldn't have had the temerity to state my dislike a second time.

Actually, abortion isn't about some nebulous value of "choice" (whatever that means)

It's not nebulous at all. It's very simple and very clear: it means that whatever a woman decides to do with her body, which includes pregnancy and abortion, is no one's business but hers. It's her choice, and no other woman's, and especially no other man's. Laws shouldn't interfere, and to claim shame and contempt are a substitute for legal intervention is, in my opinion, just a very poor excuse to indulge in said shaming and disdaining.

After the child is born, then you can talk about irresponsibility and criminal abuse to be remedied by legal intervention. Should such irresponsibility and abuse manifest itself.


That you're even considering the possibility that, were it not for the abuse on individual liberty, there should be means of preventing women from having children in cases like this like it was drunk driving, or taking them away from them, especially when talking of a case of a disabled woman, well, it's very, um, interesting.

And, Down's Syndrome? Is that in the list of things that make women irresponsible if they choose to have those babies?


ROU_Xenophobe: I'm not preventing anyone from criticizing her choice. I'm just saying what I think of that kind of "criticism". I'm not defending a particular person, of course, it's the principle, the undertone of all these condemning comments I find really offputting.
posted by funambulist at 3:05 PM on February 12, 2006


So people with disabilities or genetic imperfections just shouldn't reproduce? Don't make me godwin this shit. Why don't you all just move to, um, ok i'm trying to think of somewhere they don't allow people with disabilities to have babies, but I think that went out of style in the 40's. WTF?
posted by crabintheocean at 3:10 PM on February 12, 2006


Giving birth is not a miracle. It happens every moment, everywhere on the planet, billions and billions of times.
Being a good, capable, loving parent who raises a great kid, even if it isn't biologically yours? That's a goddamn miracle.
posted by nightchrome at 4:11 PM on February 12, 2006


It's not nebulous at all. It's very simple and very clear: it means that whatever a woman decides to do with her body, which includes pregnancy and abortion, is no one's business but hers. It's her choice, and no other woman's, and especially no other man's.

"Choice" is a bumper sticker phrase, not a serious piece of ethical reasoning. In the real world what we choose to do with our bodies is actually a lot of peoples "business" - from our doctors to our families and loved ones to the law itself in certain cases. If someone carves up their arm or threatens suicide, of course other people are going to care, and it's a good thing they do. Reproductive matters are not magically different. If your mother said she was going to try to walk a high-wire between two sky scrapers, without any acrobatic training, you would try to talk her out of it because the risk of her death would be high, and you don't want that. How does this magically change if she is going to risk a pregnancy where doctors tell her there is a 95% chance she will die? Both of these things are "choices". Our choices are not immune from criticism even if they did only affect only us, which certainly isn't the case with reproduction. In my opinion trying to protect women from moral judgment isn't feminist, it's, well, dehumanizing.

On an ethical level I would put this woman's "need" to and decision to give birth on an ethical level much closer to the drunk driver

Ok, see, we disagree. In fact, I find that view repulsive.


Then why don't you present a logical case for her actions or against these "repulsive" ideas? You've done nothing to argue against the many people who have expressed the opinion that her behavior was reckless and unnecessary, besides hinting that women have gender-based immunity to behave in manners that are infinitely reckless and unnecessary.

It's a fact that this woman's choices had a high probability of injuring and killing her, and of creating a child that would be severely disabled, with very low probability of living very long. This is much closer to the drunk driver than the adulterer.

It's also a fact that she had no compelling justification for undergoing these incredibly high risks, much as the drunk driver didn't have an excuse that surpassed a loss pride in calling a cab instead of driving one's self. Flap-doodle about the authentic joy of a biological (as opposed to adopted) baby just isn't going to cut it.
posted by dgaicun at 4:28 PM on February 12, 2006


So people with disabilities or genetic imperfections just shouldn't reproduce?

You're conflating the issue.

The problem is choice. This person (hopefully) was fully aware of all the issues, and made a completely unnecessary, risky, dangerous choice that might've had enormous, long-term, negative implications. People who disagree here are disagreeing with the choice she made, not her right to make it.

No one's saying people with disabilities shouldn't reproduce. This isn't "rah-rah eugenics," as I said before. What's being said is, let's encourage people to act rationally with their heads, not recklessly with their hearts.
posted by frogan at 4:30 PM on February 12, 2006


The outcry in this thread is why I think there will never be a need to worry about abortion becoming a mainstream "birth control of choice." There is great social pressure against it.
posted by five fresh fish at 5:05 PM on February 12, 2006


Interesting that folk are branding the urge to reproduce as 'cultural'. I'd've thought it was at least a wee bit biological.

Still, this woman, or the disabled woman featured on Channel 4's Baby Race that I saw the other day, who required two full-time carers to look after herself, let alone a baby, and was warned that pregnancy might kill her, do make me think that, just maybe, some folk ought evaluate the risks rather than blindly pursue pregnancy whatever the potential cost to themselves or their future child. (Admittedly, that might be a view clouded by jealousy, speaking as a clucky single man who is unlikely to ever have children using the traditional method, and for whom adoption would be a difficult-to-impossible process.)
posted by jack_mo at 7:51 PM on February 12, 2006


I'd've thought it was at least a wee bit biological.

Addiction to heroin is biological. So are cravings for ice cream and my urge to sleep in every morning. People choose to ignore their urges all the time because they make informed choices about the consequences.
posted by frogan at 8:36 PM on February 12, 2006


And, Down's Syndrome? Is that in the list of things that make women irresponsible if they choose to have those babies?

Oh the scores of women who, in pursuit of careers (here come the pissy emails), wait well in to their 30's and 40's to conceive, thus massively increasing their chance of Downs? Where's all the rage over those folks? I would not have made the choice this woman did (her body being too small to have a full gestation, I'd have thought the risk to the child too high) yet at the same time find it ironic that the enormously heightened risk of Downs, risked every day by increasingly older moms, isn't thought to be just as reckless.
posted by onegreeneye at 8:36 PM on February 12, 2006


the enormously heightened risk of Downs, risked every day by increasingly older moms, isn't thought to be just as reckless

Maybe because there isn't a 50% chance of bearing a child with Down's in that case? Short answer: number-wise it's clearly _not_ just as reckless.
posted by apple scruff at 8:46 PM on February 12, 2006


The chance of a woman having a baby with Down's syndrome increases as she gets older. Only 1 in 2000 births from teenage mothers are affected by Down's syndrome, but this goes up to 1 in 10 in 48-year-old women.

Again, conflating the issue. A range from one in 2000 rising to one in 10 is nowhere close to 50%, notwithstanding the risk to the mother herself.
posted by frogan at 8:59 PM on February 12, 2006


Women are increasingly having children at older ages, but prenatal screening is actually plummeting Down's rates:

"I don't know how many pregnancies are terminated because of prenatal diagnoses of Down syndrome, but some studies estimate 80 to 90 percent. . . Margaret's old pediatrician tells me that years ago he used to have a steady stream of patients with Down syndrome. Not anymore. Where did they go, I wonder. On the west side of L.A., they aren't being born anymore, he says."

Hallelujah! Medical screening has also recently defeated Tay-Sachs. Isn't it ironic with all this predictable droll noise about 'Nazis' and 'eugenics' (see linked WaPo article for more such bullshit), that Jews have probably benefited the most from these advances?
posted by dgaicun at 9:24 PM on February 12, 2006


they aren't being born anymore

Considering how far into the pregnancy one has to be to be tested, it's amazing anyone in the right-er and right-er U.S. - especially the midwest - can abort these pregnancies.
posted by onegreeneye at 10:38 PM on February 12, 2006


prenatal screening is actually plummeting Down's rates

http://mayoclinic.com/health/Down-syndrome/AN01243

"About one in 20 women will have a false positive result with any of these screening tests"

I can't imagine many moms, after making the painful choice to abort due to a positive Downs test, ask if the test was accurate.
posted by onegreeneye at 10:50 PM on February 12, 2006


dgaicun: Our choices are not immune from criticism even if they did only affect only us, which certainly isn't the case with reproduction. In my opinion trying to protect women from moral judgment isn't feminist, it's, well, dehumanizing.

Who's doing that? You can say whatever you like about this or any woman, I have no desire to "protect" anyone (from what? comments on an internet discussion?) or declare them "immune from criticism, I'm just saying what I think of that kind of criticism.

Yes, it's true that choices affect other people too. Of course. But you keep mixing completely different things and making very stretched analogies. Sure we can and should directly intervene to prevent someone from stepping in front of a train. Anyone is allowed to do that. The police is actually required to do that.

It's not so with reproduction, no matter how much you stretch those analogies.

Anyone can think what they like of anyone else's choices to have or not have children - here it's higher health risks than the average pregnancy, other times for other people it could be that the prospective parents may be too poor, too disabled, too irresponsible, too fat, too thin, too ignorant, too addicted, too depressed to be "worthy" of external approval, but that approval is not required.

Besides, here you don't have a clueless teenager who got knocked up by 'accident' or a poor starving woman in some rural third world village who had 14 children because she had no access to contraception.

You have someone who was fully informed by doctors of the risks and decided to take them. Your theory that such a choice needs to be derided and shamed, how would that translate to the attitude you'd have towards children born disabled because their mothers - and fathers (you have a father here too, I'm guessing in your view he shares 50% of the reckless irresponsibilty, right?) - decided to have them anyway even if they could screen out the disability during pregnancy? Since you mentioned Down Syndrome, what's your first thought when you see a child with Down, "what irresponsible parents"?

Then why don't you present a logical case for her actions or against these "repulsive" ideas? You've done nothing to argue against the many people who have expressed the opinion that her behavior was reckless and unnecessary, besides hinting that women have gender-based immunity to behave in manners that are infinitely reckless and unnecessary.

That's how you like to read it, the concept is simply that it's not up to you to decide which birth is reckless and "unnecessary". That's the concept I find repulsive, to consider disabilities and potential risks and even Down Syndrome as something for which the only respectable responsible choice is always to abort. One thing is to say, I would not have done the same thing. Quite another to say you'd almost like the state to intervene legally to impose an absolute rule on who's worthy of having children. If you think this is lacking in logic, then we have different concepts of logic. The idea that all reproductive choices belong exclusively to the woman who makes them is a very logical one. Because it's women getting pregnant and it's only each individual woman's business, no one else can decide for her. It's the same reason it is logical to oppose state prohibition on abortion. The arguments for banning abortion are all irrational, based on religious dogma and considering women less worthy of the status of person with capacity to choose than an embryo or a fetus. If you recognise the logic in being pro-choice, then it's rather hypocrite to want to apply that logic only in cases when the choice is abortion.

It's a fact that this woman's choices had a high probability of injuring and killing her

It's also a fact she had full medical assistance and information and is 37 year old, not 13.

Many other pregnancies can carry all sorts of degrees and kinds of risk, risks I or someone else wouldn't take, but that doesn't mean I put myself on a pedestal of 'responsibility'. We could argue having children at all is irresponsible unless you're fully healthy, rich, well educated, mentally stable, clean, young and happy. I don't see why draw the line at disabilities only. After all, say, being born to a poor uneducated mother with bipolar disorder and an alcoholic father and a family with a history of mental health issues that might be passed on to you is no picnic either.

and of creating a child that would be severely disabled, with very low probability of living very long.

And even if it the outcome had been that, instead of the lucky outcome she got, it's up to you or anyone else to judge how worthy of living that life is?

It's also a fact that she had no compelling justification for undergoing these incredibly high risks


To you, or even to me. Not to her, evidently, or her husband. Apparently this distinction escapes you.

much as the drunk driver didn't have an excuse that surpassed a loss pride in calling a cab instead of driving one's self.

Sure, that's such an apt analogy...

Flap-doodle about the authentic joy of a biological (as opposed to adopted) baby just isn't going to cut it.

I personally never said that and never stated or implied anything to the effect having a biological child is a fantastic must for every woman or that adopting is crap.

Quite the contrary. I don't think anyone can make an absolute judgement that either one is "better" than the other, because it's entirely an individual choice and you need to want to adopt or want to have a baby to do either, it's not something for which you can establish from the outside some universal standard where option A is better than option B. Plus, they're different things, not equally interchangeable options; people adopt for all sorts of reasons, not just when they cannot have children.

Now just because you think for this woman having a child was irresponsible and worthy of contempt, you concluded she - and her husband, presumably - must have had an ideological bias against adoption, as if adopting is such a theoretical decision to be made by drawing charts with the cons and pros.

They wanted a baby of their own, like millions of people do, and she didn't want to let her disability deprive them of that chance, and they suceeded. They were willing to take the risks and it's no one else's business that they did.

And if you really believe that such a choice is to be discouraged, as if your opinion matters more than two people's decisions about their lives, then the idea that you need to persuade people through shame and scorn is a rather medieval view of education. Especially since we're talking disability. It's a bit rich for an able-bodied person to feel entitled to judge what kind of limits a disabled person should accept or fight against.
posted by funambulist at 3:06 AM on February 13, 2006


And just to be even clearer on the choice thing: it's not that "women have gender-based immunity to behave in manners that are infinitely reckless and unnecessary", it's that women have a gender-based biological exclusivity on pregnancy, so no one else can judge in which cases one woman should abort or give birth or the level of responsibility in an autonomous, conscious decision by an adult woman, no matter what of those options she chooses. Pro choice means nothing if you're not supporting the full range of choices there.
posted by funambulist at 3:10 AM on February 13, 2006


And for the record, I think it is a good thing that women today in developed society have the freedom to postpone or avoid pregnancy altogether and pursue a career and their own self-fulfillment, rather than seeing the only option for self-fulfillment in motherhood; I also I think it is a good thing that there are such medical and technological advances in prenatal screening. BUT I also respect each individual decision to have or not have a baby who's been diagnosed with any sort of disability including Down Syndrome which is very very different from something like OI. I can't know what I would do unless I was in that position to choose. I don't believe there is an absolute "better" choice there.


And I do wonder what kind of attitude a person has towards the disabled if they think abortion in those cases would have been *the* only respectable, rational, intelligent, responsible option.
posted by funambulist at 3:20 AM on February 13, 2006


And even if it the outcome had been that, instead of the lucky outcome she got, it's up to you or anyone else to judge how worthy of living that life is?

Type II

* Most severe form.
* Frequently lethal at or shortly after birth, often due to respiratory problems. In recent years, some people with Type II have lived into young adulthood.
* Numerous fractures and severe bone deformity.
* Small stature with underdeveloped lungs.
* Collagen is improperly formed.

I feel that that life is just as worthy as any other to live, which is why I would feel so bad that it would have to live with such a debilitating disease.

No one wants to take away her rights (at least I don't) but I guess in the end I am surprised and disappointed that a woman who knows first-hand the horrible effects of OI would be willing to pass it along to her child because she is so desperate (I think the word "desperate" fits) to give birth.

Now, if this story was about a woman with HIV, then I think the outcry would be much larger. But for some reason this one is supposed to be a heartwarmer, and I just don't get it.
posted by apple scruff at 9:33 AM on February 13, 2006


skallas: No, actually, I wasn't. But the strawman tendency bores the crap out of me so, if you don't want to read my entire comments, and instead care to interpret them in a way in which to argue rather than discuss, well I'm sad for you.

And, are folks under the impression that having 2 miscarriages is somehow uncommon in women of childbearing years? It is not, in the least.
posted by onegreeneye at 3:24 PM on February 13, 2006


Seems to me that one can condemn the woman for being so selfish as to insist on a pregnancy, and at the same time support her right to choose such a selfish action.
posted by five fresh fish at 4:22 PM on February 13, 2006


Besides, here you don't have a clueless teenager who got knocked up by 'accident' or a poor starving woman in some rural third world village who had 14 children because she had no access to contraception. You have someone who was fully informed by doctors of the risks and decided to take them.

Do you have the slightest clue what the point of shame is? It's exactly because I believe her to be a rational actor that I think shame is necessary. You don't shame an asteroid that hits New York, because it will have no effect on that asteroid (which is already gone) or future asteroids, because they don't respond to such an incentives. What you are saying is that it would make more sense to shame people who couldn't help it, rather than people that could! [??]

Your theory that such a choice needs to be derided and shamed, how would that translate to the attitude you'd have towards children born disabled

I guess in the world of scary funambulist anti-reasoning it means we should call them retards and throw feces at them of course. What else!? Funambulist it is a distinct displeasure to have an "argument" with you, as you appear to play by a whole different set of logical rules. Perhaps we shouldn't ask people to wear seatbelts, or condemn those who don't, because that would be exactly like saying we wish all the living people injured in beltless car crashes didn't exist. Asking others to wear seatbelts would almost be like implying that we find the state of existence of the already injured somehow needlessly tragic and worrisomely below the average of what we believe human's deserve. It would be like saying they are inferior to non-injured people. I can hear the gas chambers warming up already.

Me: In my opinion trying to protect women from moral judgment isn't feminist, it's, well, dehumanizing.

You: Who's doing that?

You. That is exactly what you're doing. In the next paragraph. In all of your posts in this thread. That is your exact argument: others - loved ones, society - have no right to make any moral judgments on any woman's reproductive decisions. It's so fucking preposterous that even you are shocked by it when it stares you in the face - "Who's doing that?". And don't think for a second that it's "feminist", because it isn't.


. . . it's not up to you to decide which birth is reckless and "unnecessary".

"Who's doing that", Indeed.

That's the concept I find repulsive, to consider disabilities and potential risks and even Down Syndrome as something for which the only respectable responsible choice is always to abort.

Can we please stop with the strawmen? This wasn't a Down's child, it was an order of magnitude worse, involving high risk to the mother's own life. Jesus, why does this even need to be argued? Is this a matter of pride for you to defend extremely poor choices at all costs against all common sense?

The idea that all reproductive choices belong exclusively to the woman who makes them is a very logical one. Because it's women getting pregnant and it's only each individual woman's business, no one else can decide for her. It's the same reason it is logical to oppose state prohibition on abortion.

Look, if you think that the arguments against moral criticism of reproductive choices are "the same" as arguments for the legality of abortion, you have an incredibly shallow understanding of ethics and the law, and that's all there is to it.

Many other pregnancies can carry all sorts of degrees and kinds of risk. . . We could argue having children at all is irresponsible unless you're fully healthy, rich, well educated, mentally stable, clean, young and happy.

You are a deeply, deeply wacky thinker. This is like real Alice in Wonderland stuff. Do you understand any distinctions? Do you not understand why some risks to the mother are worse? A lot worse? Do you not understand why some risks to the child are worse? A lot worse? Do you not understand the particulars of this case that make the decision uniquely reckless? Please don't respond, these are rhetorical questions, and you are an idiot.

Me: It's also a fact that she had no compelling justification for undergoing these incredibly high risks

You: To you, or even to me. Not to her, evidently, or her husband. Apparently this distinction escapes you.

You really are a dink. Rational and irrational actions aren't just "all relative", and even if they were, I hardly see why I should feel bad trying to impose my own equally arbitrary normative standards on others. In fact, relativism is the ultimate justification for tyranny (and all the "choice" rights you think you are defending), because it effectively neuters its own moral defenses against such. Of course I hardly think someone who cuts off his arm for a 5 ounce candy bar made a good choice even if it "made sense" to him, and if you want to say otherwise you are arguing in bad faith. And that is very annoying.

It's a bit rich for an able-bodied person to feel entitled to judge what kind of limits a disabled person should accept or fight against.

More dehumanizing BS. But isn't it a bit rich that you should criticize me without the unique first-hand experience of my gender/race/class/pants size/area code/favorite band? What gives you that right?!

I suppose you would defend a quadriplegic trying to drive an 18 wheeler on the highway, with nothing more than a stick in his mouth to control the wheel and the brakes. Who are we - presumptuous able-bodied asses - to impose limits on him, even if what he does creates risk to himself and others. It was his "choice", and it made sense to him, and we can use our arms and legs, so we shouldn't judge. A bit rich alright.
posted by dgaicun at 7:33 PM on February 13, 2006


Speaking of straw men...

What you are saying is that it would make more sense to shame people who couldn't help it, rather than people that could! [??]

No, but congrats, that is some impressive misreading. When I brought up "she's not a clueless teen/poor village woman with no access to contraception", the point was in no way "because those are people we should be rightly shaming and deriding", the point was that unlike those cases it was a wanted pregnancy by an adult woman who received a lot of medical information and assistance. (I hear another "so what?" coming, but I can't explain why that distinction should be relevant if you don't get it yourself. And I'm speaking for myself, not for the Great Feminist Conspiracy or the Great Motherhood Conspiracy, thanks.)

And yes of course all that means "she could help it", but here you're taking for granted everyone should accept your belief that the absolute right thing to do would be for every woman in her situation to never even think of having children.

Now, just have a look at the advice about OI and Pregnancy; it doesn't say "you should have children and don't ever let the OI stop you", it doesn't even say "you should not even think about it!", it presents the available facts and statistics so that people can make their informed choices. Is that irresponsible, or enabling irresponsibility?

Let's assume your analogies are entirely appropriate, wouldn't it be like giving advice to a drunk driver on how to drive after getting drunk, or even to the choice of wearing or not wearing a seatbelt? Ignoring for a moment the totall irrelevant fact that not wearing a seatbelt and drunk driving are illegal criminal behaviour, unlike what we're talking about here.

And no it's not that I don't get "the point of" shame, it's that I think there is no point to shame, because for one thing, you're completely deluded if you think whatever you or I or anyone else write in a comment here is going to have an effect on the protagonist of the story (and you completely missed the point if you think my interest here is "defending" her personally, I have no more investment in the story than you), secondly because attributing educational effects to shame and contempt when talking about reproduction and pregnancy and abortion and disability, well, that's an approach that speaks for itself.

On with the peculiar analogies...

Perhaps we shouldn't ask people to wear seatbelts, or condemn those who don't, because that would be exactly like saying we wish all the living people injured in beltless car crashes didn't exist. Asking others to wear seatbelts would almost be like implying that we find the state of existence of the already injured somehow needlessly tragic and worrisomely below the average of what we believe human's deserve. It would be like saying they are inferior to non-injured people. I can hear the gas chambers warming up already.

No, I leave the hyperbole to you. I'm not the one who responded with "halleluja!" to the quote that more people are aborting children with Down Syndrome (which you brought up first anyway, in this comment, so, sorry, but that's no straw man on my part).

And no, I'm not seeing the gas chambers in action there at all, I'm not condemning that choice at all, in fact the point is simply that I cannot say it's a bad thing or a good thing in the absolute, as if there was a rule for everybody, because it's up to people who find themselves in that situation to decide if they want to have that child or not, no matter what the risks are. It doesn't fucking mean I am not aware of those risks, it means I'm not in that position to choose, and, unlike drink driving and not wearing a seatbelt or driving a weelchair on the highway (any more wacky analogies there?), all choices regarding reproduction even for disabled people are allowed and legal and assisted through informed medical consent, so I will not pretend I'm some higher authority than the law or doctors. The comment about it being rich for able-bodied to judge is general, not addressed at you specifically, I include myself in that category.

So, just like I would most definitely not go "shock horror you nazi!" to someone who decides to terminate that pregnancy, I would also not go "you irresponsible masochist sadist suffering-perpetuating selfish person" to someone who wants to continue that pregnancy. Perhaps acknowledging and respecting those individual choices is just a weak moral relativist position now? Talk about logic...

As for how me wondering how a belief that the best absolute choice is to terminate those pregnancies translates to attitudes towards those living with those disabilities, I'll tell you what my personal bias is: I live in a society in which efforts to provide access and facilities to disabled people are still poor compared to other countries, US included; and where not too long ago there was still a not too marginal bigoted view that disabilities were some sort of divine punishment or the fault of the mother who did something wrong during pregnancy (and guess what, that sometimes collided with bigoted religious views - and still does, see this for example), so there was often a lot of shame associated with having disabled children, it was a taboo, which did translate into stigma for disabled people, and did have something to do with that lagging behind other countries when it comes to providing facilities for the disabled and so on.

Huge progress has been made in the past few decades, but I can't pretend that background never existed. It was not some exceptional context like the gas chambers, it had nothing to do with eugenics, it was an ordinary mentality in ordinary circumstances, that disability was a curse, and the belief that those babies should not have been born had very tangible consequences on how they were treated even as older children and adults.

Now you may be simply making the claim that people should not be deliberately embracing the risk of having disabled children, without that equalling revulsion or discrimination towards existing disabled people. You made it clear that you certainly don't think like that, so many humble apologies from this "dink" and "idiot" for calling you a disabled-hating monster (which I didn't, but nevermind). But that's you.

In the wide world out there, there are people who don't make that distinction, and where "should not have had that child" is not borne out of an indoubtedly rational, noble, compassionate desire to spare suffering to people, but is just a modern version of that archaic stigma. I don't live in some ideal world where this would be completely untrue and only a wild idiotic exaggeration. If only.
posted by funambulist at 3:04 AM on February 14, 2006


Oh and I am surely an idiot and a dink for bothering even after that kind of reaction, but you use some selective quoting -- what you cut out from the "alice in wonderland" idiot stuff was this: Many other pregnancies can carry all sorts of degrees and kinds of risk, risks I or someone else wouldn't take, but that doesn't mean I put myself on a pedestal of 'responsibility'. (Again see above the point about the related choices being legal and assisted through medical information, unlike all the examples in your wild analogies). I also said this, which you seem to have missed:

Anyone can think what they like of anyone else's choices to have or not have children - here it's higher health risks than the average pregnancy, other times for other people it could be that ...

But yeah, let's pretend I'm ignoring the risk of OI and equating it with any other normal risk of pregnancy. Yeah it's been a pleasure for me too.
posted by funambulist at 3:08 AM on February 14, 2006


Look, I thought about it, but I can't continue this. It really feels like arguing with a ten year old; you're just not very smart, and it's making me act like more of a jerk with each reply.

For the record, though:

And I'm speaking for myself, not for the Great Feminist Conspiracy or the Great Motherhood Conspiracy, thanks

Yeah, no shit! At no time was I so deluded to think your opinions were representative of any movements I respect.
posted by dgaicun at 8:46 AM on February 14, 2006


Jesus, you two, why is it so hard for you to agree that:

1. It is okay for this woman to make her own pregnancy choices.

2. It is okay to criticize her for the choice she made.
posted by five fresh fish at 9:57 AM on February 14, 2006


Heh, brilliant, thanks! too kind, too kind.

For anybody actually interested in the issue here, since we've been pretending this is not something on which there's some complicated ethical debate going on, here's an article with some informative links, including one to an archived debate on NPR radio where different positions on disability and reproduction issues were discussed.
posted by funambulist at 10:04 AM on February 14, 2006


fff, I'd add: 3. others also have the right to disagree with the kind of criticism expressed. Festival of the obvious isn't it?

Anyway, I do recommend listening to that NPR debate as it fleshes out many of the conflicting views on the issue. (And for the record, FWIW at this stage, I definitely do not share the disability advocates' opposition to prenatal screening, I'm simply with the "given proper medical information and advice on all options, only those prospective parents can know what is the best choice for them in their situation" conclusion, which is the only consensus the debating parties reached).
posted by funambulist at 10:20 AM on February 14, 2006


Jesus, you two, why is it so hard for you to agree that:

1. It is okay for this woman to make her own pregnancy choices.

2. It is okay to criticize her for the choice she made.


Have you been paying the slightest bit of attention to the argument? I have extensively defended both these premises; it is Funambulist who doesn't accept that it is morally acceptable to criticize any woman's reproductive choices, as she has stressed continually. So bitch at him/her, k? Leave me out of it, I'm done, but if you want to include me at least get the facts right.
posted by dgaicun at 3:42 PM on February 14, 2006


Okay, you're excluded.
posted by five fresh fish at 5:27 PM on February 14, 2006


you're just not very smart, and it's making me act like more of a jerk with each reply

Wow. I hear that with domestic violence offenders every day: She is (insert insult here), thus forcing me to abuse her. (I have no control over my actions, SHE made me act this way. I'm smarter, and superior, yet SHE has control over my actions. She made me abuse her.) Kind of surprising to see it in this forum. But then, I'm new. Maybe it's the norm. Hope not!
posted by onegreeneye at 8:36 PM on February 14, 2006


Someone definitely hasn't been following the thread, since the nature of that "criticism" was: comparisons on an ethical level with criminal actions; followed by acknowledgment that unlike in those cases law enforcement here is not possible and would infringe on liberties; followed by the wish it were at least possible, when effective, to intervene legally to remove these children from the parents who irresponsibly decided to have them despite disability, including children with Down Syndrome; followed by the notion shame and contempt are a worthy ethical and social substitute for that kind of impossible legal action. Quotes:

- "On an ethical level I would put this woman's "need" to and decision to give birth on an ethical level much closer to the drunk driver

- There really are few ways of legally preventing a woman from having a baby (or a man from having extramarital sex), that don't trample basic rights. Certainly sterilization and other such methods are still barbaric. But I might be open to the state claiming any such babies ... etc.

- By the way, acts that are wrong that we can't legally prevent (like adultery) demand more social methods of prevention, like guilt and shame, not less.

The notion that this kind of attitude should be viewed as mere rational criticism and self-evident truths with no relation whatsoever to general - not individual - social attitudes towards disability ignores the wider and complex debate on those very issues of reproduction and disability. A debate in which the concerns raised by both women's and disability rights advocates can hardly be dismissed as irrelevant.
posted by funambulist at 1:22 AM on February 15, 2006


See also here.
posted by funambulist at 1:48 AM on February 15, 2006


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