October 18, 2005

Too Quiet Around Here? Then Let Me Mention This Down Syndrome Abortion Editorial

Obviously, I'm just not going to the right dinner parties. Because I've never heard anyone pronounce a parent's "moral obligation" to terminate a pregnancy when prenatal testing reveals a likelihood of disability. The Washington Post's Patricia Bauer has, and the pronouncer--the head of an "Ivy League ethics program"--supposedly snubbed her after she started talking about their experience raising a daughter with Down syndrome.

Bauer's op-ed wants "the national debate" about abortion to include tough questions about how prenatal testing is waging an invisible war against "a whole class of people," namely people with disabilities. One pediatrician "On the west side of L.A." says Down syndrome kids just "aren't being born anymore" in his practice. Translation: wealthy liberal elites are aborting babies with disabilities for their own convenience. [Not sure how line-toeing anti-abortion coding is going to foster sincere dialogue, but hey...]

I'm totally down with Bauer on the Down's kid experience; I've always known Down's people and Down's families to be incredible, inspiring and loving [although as a parent myself now, I can also imagine it's a daunting, sometimes difficult challenge].

But her editorial ends--and turns out to be flecked throughout--with orthodox anti-abortion pro-choice-baiting. Maybe it's natural for the mother of a Down's kid to see the pre-natal testing/abortion issue in this way; but it seems to me that what should follow is not a charge of pro-choice selfishness and hypocrisy, but a discussion about the reasons people decide to terminate a pregnancy. Unsurprisingly [?] Bauer doesn't call for pro-life proponents to entertain that idea, since it would mean conceding that 1) abortion is an individual parental decision, and 2) there are situations where it's acceptable.

When we were discussing the possible circumstances where we might decide to end a pregnancy, Down syndrome was not on the list (neither was a single pre-natal test result, for that matter, but that's a separate discussion).

Do I, like Bauer, hope that people don't base such a momentous decision on incomplete, inaccurate, or outdated information or--even worse--on selfishness and imagined inconvenience? Yes. Do you even want to get me started on the notion of deciding whether to continue a pregnancy because of the kid's gender? No way. Do I think that couching this debate in stealth-polarizing, condescending terms is the best way to go, though? 'Fraid not.

The Abortion Debate No One Wants to Have [wash post op-ed]


Well, this is a fun one!

I have to say that as a 39-year-old pro-choice person who has even marched on Washington for choice I was SHOCKED at the pressure I received to undergo amnio and the implication that I would terminate a Down syndrome pregnancy (I wouldn't have). It disappointed me that there was pressure to "have a perfect baby" when I've known so many wonderful Down syndrome kids. And I hardly think Down syndrome is the worst thing that could happen to a parent; it just is one you can test for.

But all of that said, I don't think that it has anything to do with most people's pro-choice positions. As you say, I think she is pro-choice baiting and her conclusion does not follow from her experience. For me, being pro-choice is about allowing people who are poor to make a decision. People who are middle class and above can always get an abortion; they can travel to another country or find a willing doctor to say they had a miscarriage. If they are self-centered enough to want to terminate for genetic disorders, they are always going to find a way to do it.

Terminating for Down syndrome has a lot more to do with improvements in genetic testing and wanting a perfect child than it does abortion rights. My suspicion is that most folks don't even connect abortion rights with genetic testing, and assume that even if abortion laws change that it wouldn't apply to them or wouldn't apply in this situation. If 80-90% of Down syndrome pregnancies are terminated, some percentage of those people must identify themselves as "pro-life" as I'm pretty sure that genetic disorders don't confine themselves to developing among those that vote pro-choice.

How does this square with a piece they ran last year about anti-abortion folks terminating pregnancies for Down's and claiming to have had a miscarriage?

I was never pressed to test with our first, who was born when I was 35 and without so much as an ultrasound through all of the prenatal visits through the time she was born, two weeks late (and perfectly fine). Although we are pro-choice, we had chosen to have a baby and would deal with the baby we got.

However, when I found out I was pregnant with her brother, six years later, we considered what it would mean to our family to have a baby with disabilities without any advance warning. So, I had an ultrasound, which showed some issues that could be a sign of a serious problem, or could be nothing. I chose to have an amnio, which indicated it was nothing. But we thought long and hard about what it would mean for us and what we might do.

I know a fair number of families with Down's children (generally the youngest, mostly girls, oddly) and these people are very pro-choice. I think this over-simplifies and polarizes a complex personal issue.

I've been a regular Daddy Types reader for some time. I enjoy learning about the latest stuff and trends for my 5-month-old son. But do you really want to get into the political spectrum with your Blog? I don't really want to voice my opinion on this particular issue, but I am getting rather annoyed at the number of "Moms" posting comments. Stick to YOUR blogs ladies and leave Daddy Types to the Dads.

What concerns me about this debate (well, the one I heard on NPR) is that it centers on "quality of life." If you'll abort someone with Down syndrome, why not abort for hearing or visual impairments? I have a friend with total vision loss who I'd be worse off for having never known. Where do you draw the line on quality of life?

BTW, NYCrex, I oppose being screened for a wangdoodle prior to posting on Daddy Types. What's in my pants and/or my gender and family roles are none of your business.

Well, I for one learned a long time ago that NOT listening/paying attention to the woman in my life generally leads to problems, for me anyway. I'm a dad and a husband and I like hearing what the ladies have to say. Occasionally, they even make a salient point. (That's a joke, seriously, A JOKE!)

I'm not sure the above poster feels like Moms can't have opinions here. I've also been reading Daddytypes for some time now and I'm going to go ahead and comment! Anyway, I am the mother of two, one of whom is 2 1/2 and severely disabled. Amnio, ultrasounds and genetic testing would not have unearthed his issues, as he is still undiagnosed. In fact, the genetecists and neurologists I have spoken to tell me that 50% of children with disabilities are undiagnosed. So, all the prenatal testing might be giving a false sense of security to many parents.
Along my journey with my son, I've met several down syndrome babies and children. I wonder if people would be willing to abort a DS child if they'd spent any time with one. They are very sweet and in fact, on a slower timeline, but still able to crawl, walk, communicate, things that my son is still unable to do. The parents of the children I've met are also very gentle and kind. It takes alot of patience to raise any child, but raising a disabled child has different rewards. It does take alot of patience and a huge heart - these children have a lot of love to give, and they need a lot of love in return.

None. Of. Anyones. Damn. Business. Period.

Abort. Don't abort. That's why it's called choice.

Oh, and these fake, anecdotally based, non-sourced stories about trends are a bit vile. They smack of the worst of lazy journalism.

Patricia Bauer's Op-Ed gave off a much more insidiously selfish vibe than what I've seen anyone identify thus far. Namely, that after eighteen years of raising a Downs child (whom she understandably loves and treasures) Ms. Bauer is weary of defending (or more likely: weary of feeling like she needs to defend) the fact that she gave birth to a genetic mutant.

(It is a genetic mutation, btw, which is exactly why genetic testing can identify it. Trisomy-21. Please don't fly off the handle just because I'm not calling a rose by another name.)

On behalf of her daughter she is hurt and angry that many other families, when presented with the choice, would prefer not to take on the challenges of raising a special-needs child. It makes her feel like they reject HER choice, like they see HER child as "less" than what they want for themselves, like they are cruelly and coldly denying how special and lovable her daughter is. It doesn't really matter that nobody in the entire world could possibly love her daughter the way she does. Nor does it really matter that their decisions have NOTHING AT ALL to do with her or her child. And, it clearly doesn't matter to her WHY other families make that choice for themselves - what calculus of age, health, time, patience, financial & other material resources, other existing or potential offspring, etc. affect their decisions.

It never occurs to Ms. Bauer to addresses the intimate and intricate issues of other people's lives and choices at all. Thus, she prefers instead to rail at the straw man of West L.A. types (that's code to identify the demanding, driven, upper-middle-class elite, and just in case you didn't know you're supposed to look down upon them as morally inferior) with their presumed demands of a guarantee of perfect offspring.

Do you suppose it's just possible that other people know there is no guarantee of a perfect baby? Or that they know the strengths and limitations of their own lives and families better than Ms. Bauer does?

It's too bad that for whatever reason her insecurity (or anger. or love. or jealousy. or fatigue. or whatever.) has Ms. Bauer to the conclusion that perhaps fewer people should avail themselves of genetic testing. Because they're doing it for the wrong reasons you see, like the ancient Greeks, and you just know someone's going to mention the Nazis and Eugenics any second now.

Is it really so difficult to imagine that someone can be for the rights of the disabled and still prefer that his/her/their offspring are genetically normal?

Our origina ob/gyn pressured us a great deal NOT to do an amnio, and I'm convinced was trying to drag out the scheduling so that it would be too late to do anything with the results.

I think there will have to be a debate when testing for specific characteristics within the timeframe for a legal abortion becomes commonplace. I think Down's syndrome is not that characteristic myself, although there are clearly worse genetic disabilities, and I believe it really should be the parents' choice. That essay wasn't about the debate nobody wants to have, but the certainty the author wanted to impose.

NYC, your point is well taken (one of them, anyway); I agonized writing this post, but only because it flew in the face of our own experience. The more I think about it and the more emails I get from people, the angrier I become over it precisely BECAUSE of the politically poisonous debate right now.

That said, I ultimately decided to post because I thought that pointing out Bauer's context and assumptions was important, but also to look for a chance for people on "both sides" to find some common ground and discussion that is otherwise almost entirely absent from the current political atmosphere.

Bauer tries to demonize "pro-choice" people as not just "pro-abortion" but as "pro-eugenics to boot. [That she begins with an handwaving qualification of William Bennett's idiotic utterance about aborting black babies to prevent crime is barely even worth mentioning.] But it's always been a convenient, self-serving fallacy of the anti-abortion movement to call those who disagree "PRO-abortion."

Without getting into full-on political policy debates, I can say that pre-natal testing was a major, significant, serious point at which we reflected on and discussed the moral implications of our actions, of pregnancy, and the responsibility that bringing a life into the world entails. I think that's the same for any conscientious human being. I would hope that acknowledging that fact, giving at least some of our own experience, and providing the opportunity for a range of other approaches and issues to get out there would be of use to people who face (or are about to face) the same decisions.

And to your second point, yes, most of the people I hope to reach don't have uteruses. But especially on a serious moral and physical aspect of pregnancy, yes, I'd absolutely want to hear women's perspectives. After all the era where they're expected to sit by in silence while the menfolk figure everything out is looong past.

Choice... The horrible word all despots fear... Why should anyone do anything else but follow the large gray mass of followers and revel in their normal lives and doing what else the Joneses are doing. This is what I feel it is all about in the end.

Pro-Life or Pro-Choice, in my eyes there is no real difference. It is just concocted terms for people who do not want people to make their own decisions and terminate offspring early versus people who want to do their own decisions if they want to terminate their off-spring early.
But then again, we have the ridiculous statistics that people who are "Pro-Life" are more likely to send their off-spring into war (even if they're based on lies and ignorant decisions) ergo being the same as the pro-choice and terminating their off-spring early...

We also see that many health "professionals" has chosen to practise their politics in their profession by refusing to help with population control as well as doing their best to prolong decisions for amnio testing. Sad as I thought the hippocratic oath was about doing no harm and acting in an objective manner.

To end this I only want to say like so many women has done before; "Keep out of my womb!" People are entitled to make their own decisions. IF they decide not to have a genetically modified child it is up the them, as well as it is up to them if they do. Personally I know exactly what I would choose, but one is always 2 in these matters and usually a very long discussion is necessary if one of the parties does not feel the same way.
Oh, and I don't even think we have seen the beginning of this discussion yet compared to what will happen when true genetical modification becomes possible...

Ahhh the beauty of debate. If only the lines were more clearly defined. Ms. Bauer continues the fallacy (as Greg pointed out) that the polar opposites in this argument are Pro-life and Pro-choice. They, of course, are not. The true opposite of the Pro-life position is one that calls for mandatory abortions (hello Beijing). The middle ground is Choice.

Being male I will never be faced with the decision but if I were I would not be able to terminate a pregnancy. The choice, however, would be mine. I would no more want someone to determine that I could not abort then I would want to have someone require me to do so. The reasons for terminating a pregnancy are and should remain personal. Would the world be a better place if parents loved and cared for their disabled children instead of aborting them? Maybe. Or perhaps those parents would fail miserably and thus are heading off a potential disaster.

At what point do we draw the line with a potential disability? And that, of course, IS the point - WE don't... the individual does and that choice is their right.

And by the by NYC, what is up with the MAN CLUB mystique you seem to have imagined for all of us here? Is it a cooties thing?

A small addition...

I have made it clear that I am Pro-choice but...

Is aborting a child because of Down Syndrome or any other disability really a different choice than aborting one (healthy or challenged) because of financial reasons, career reasons, marital reasons or just because you don't want it? Abortions occur everyday because someone just doesn't want to take on the burden of a child. Do we presume that the added burden (correctly perceived or not) of a disabled child is any less of a justification. As I said - Choice.

I'm politically pro-choice, but would have a very difficult time making the choice myself. My oldest son is autistic. My second son was born before the first had been diagnosed. But my third was born six years after the second, because we agonized over the decision to have him. After consulting with a geneticist, we were told we had a 1 in 20 chance of having another autistic child.

We spent a long time thinking over those odds. There was no point in having an amnio, since it couldn't test for autism, and the odds of Down Syndrome were far less (1 in 300, I think).

In the end, we decided to go ahead with a third child, partly because after a while 1 in 20 doesn't sound so bad (we could have 20 more kids, and only 1 would be autistic!); because at least we knew how to handle autism by then; but most importantly, because not having that third child would mean that the autism had won. We wanted a third normal child more than we feared another autistic child.

People who abort disabled children are likely doing so with no information about what that child would do to their lives. Yes, having a disabled child is difficult, but it is not the end of the world. My wife has written extensively (Making Peace With Autism) about our family's experiences with autism.

Part of the false dichotomy that Greg points out came to light on a blog I linked to via Artois... on it a pro-choice blogger was being congratulated by some helpful right wing troll with "glad you decided to not abort you child"... when the whole post had been about the planned nature of her pregnancy.

That is what has been lost here in this debate (not just in the US, don't worry): just because I don't believe there should be laws preventing women from having reproductive control (or control over their bodies period) it doesn't automatically follow that I'm for aborting all babies. It just means that I recognize that it's none of my damn business.

Greg, thanks for your insight to your feelings regarding opening up your blog to such a political and moral hot button. I, for one, hope our country continues on a path of personal choices.

But I still stand by my conviction that Daddy Types should be a place for new Dads as your title suggests. I found this site because I am a new dad. I share many of your articles with my wife. Is there anything wrong with having a site for dads (i.e. MEN) ???

[Believe me, Rex, I hear you, and it's important for me to keep DT a dad-oriented, dad-friendly place, largely because so many (all?) of the major parenting resources are so mom-centric, I felt ignored and odd/uncomfortable entering discussions there. But I also figured--and still believe--that the alternative to gender-based exclusion isn't OTHER gender-based exlcusion, but inclusion. And if it takes more references to cars and farts to keep the m:f ratio above its current 2:1, so be it. -ed.]

If someone would please explain to me what "abortion is an individual parental decision" means I would be forever indebted. First of all, I can't imagine a more non-parental decision a person could ever make. That's like saying a hunter is making an "environmental decision" right before he squeezes the trigger. And secondly, if by "individual" decision, we're hiding behind the right to privacy - then I would personally like to be the first to nominate pedophilia and infanticide for the "individual parental decicion" category as well.

[Hey Joe, have you met George's friends Harriet and John? I think you'd like them. -ed.]

Well JoeDad,

In answer to your question regarding what "abortion is an individual parental decision" means, consider yourself forever indebted to me.

Suppose, for example, that you have a spouse and that you and your spouse have two children. (I was going to say two point five, but I thought that would be just gratuitous smart-ass on my part.) You love your two children - as many, probably most, parents do - like you've never loved anyone in your life. You have come to understand that, for you, "unconditional love" means that no matter what those two kids do, or how difficult they can be, there is nothing they could do that could make you stop loving them. Someone else might understand the phrase differently, but for you - that's what it means.

Now, suppose those two children are both autistic. Autism, btw, while not completely understood, is thought to arise from congenital factors. You do know, however, that "Congenital" and "genetic" are not the same (if you don't, look 'em up; I'll wait). In other words, genetic abnormalities can be tested for in utero via CVS or amniocentesis, but congenital factors cannot.

So anyway, yes, both of your beloved children are autistic. You love them so fiercely you'd slay dragons for them, and it hurts all the time, every day, that even if you could find and identify and slay a dragon - that would not make them "well". It also hurts that in so many ways, finding a slaying a dragon - one great, albeit mighty difficult goal - would be so much easier than the soul-deadening day-to-day sadness of trying to COPE with two autistic children. Have you spent any time with autistic children JoeDad?

Because if you have, then you know what it means to monitor every bite they eat because of their special diets, you know about the regimens of therapy and the trials of finding qualified therapists to treat your children for relatively poor pay and mentally exhausting work. You know what it is to see a child begin to bang his head against the wall over and over and over because he was counting the cars go by out the window and blue one drove by but he was expecting a red one and he JUST CAN'T TAKE THE UNPREDICTABILITY AND OVER/UNDERSTIMULATION OF THE REAL WORLD.

If you don't know any of these things then you'll just have to take my word for it that what I've described is NOTHING compared to how hard it actually is to raise an autistic child every single day. And of course you can be counted on to just keep your mouth shut and be grateful to God and the stars and the fates that your path in life has been so free of such a painful experience.

So you and your spouse have two precious children, to whom you are forever devoted, and on whose behalf you'll be forever indebted (literally. do you have any idea how expensive this is? and you don't think insurance covers everything do you?). Some say that love is limitless, as in no matter how many children you have, you won't any of them any less than they ever did, just because a new one comes along. That may be - probably is! - true. Alas, the same cannot be said for financial resources. You understand that don't you? And for the sake of brevity, I haven't even touched on what raising children does to the "quality of life" or "quality time" that you spend with your spouse. So let's just skip to the part where - miracle of miracles - you and your spouse not only succeeded in having sex (albeit brief, and without the foreplay and passionate abandon of your youth), but that despite birth control, you find yourselves pregnant with a third child!

Oh shit! Oh yeah! Oh shit! Oh yeah!

You hardly know what to think. Even though it's an event you actively planned against happening (you know your odds of having another autistic child are greater than 1 in 20), there's some small part of you that wants to be happy! Wants to embrace this pregnancy and love this child! But the expenses - oh god - you can barely afford these two and their diets and their therapies and, and, and...

And the family obstetrician knows your history and your respective ages and suggests that you might consider genetic testing. Now everybody with a brain knows that genetic testing doesn't identify congenital birth defects or disorders, only genetic ones. That's why it's called genetic testing. And your insurance will even cover it (wow! and boy they sure owe it to you to cover something!). So you get the CVS. And you find out it's a girl! And yeah! Because girls - for whatever reasons - are less likely to develop autism. And oh shit - she's also Trisomy 21. If she makes it to term, she will have Downs Syndrome.

Now, JoeDad, as you are no doubt aware, a CVS is generally performed early enough during the first trimester that you could make the individual parental decision to have an abortion.

What do you do? Why or why not? And please be aware that you must justify your decision to me - despite the fact that I have not been in your position, nor do I have to live with the consequences.

You see, like Patricia Bauer and now you, I have decided that I have the moral authority to demand this accounting of your private life and personal experience. So don't you dare try to hide behind the euphemism "abortion is an individual parental decision" - because we all know that is just code for you trying to weasel your way out of defending yourself to us, explaining to us your every choice - however moral or minute - and awaiting judgement by us - as you are, of course, obligated to do.

Also, JoeDad, I know you thought you were being cute and clever, but hunting, and indeed eating meat in general, IS a personal environmental decision. You are chosing -- of your own free will -- to do something that effects the environment. No one is compelling you to hunt or eat meat, just as no one is forbidding you to do so. However, hunting can help control overlarge populations of deer, for example, that have an adverse effect on particular localities, just as the commercial meat industry has one of the largest adverse environmental effects (land and water usage for the amount of food produced).

Umm... to both bcc and Chris, may I say, on behalf of the rest of the viewing audience, well done.

Isn't it funny throughout your entire rant, that you say absolutely nothing positive about people with Down Syndrome (not "Downs people", mental retards or mongoloids!)???

You obviously don't want to take the time and get to know someone with Down Syndrome, do you?

You are a typical pro-choicer who has ignorant ideas about WHO these people are and you don't want to see them as more than anything than the way Adolf Hitler saw them.

Obviously, Bauer compares pre-natal testing to nazi eugenics, because in both scenarios the children are considered worthless.

I personally know of women who are pro-choice and tell me freely that they would abort. They call these people "just a bundle of troubles."

A "bundle of troubles"...what a well educated opinion coming from people who practice "tolerance and diversity"

You obviously have no compassion for mothers of disabled babies. Or you would not be calling this lady "selfish."

I'm sure you'd abort and continue to tell your genetically perfect children that these kids are pieces of crap...

You don't even acknowledge that Bauer was trying to break a stereotype...

Ignorant is as ignorant does, Olivias. I'm not sure which "rant" you're referring to, but no one here has said or implied anything close to the offensive, narrowminded insults you mentioned. My original post and complaint against Bauer's article says just the opposite, in fact, that despite the challenges, the people with Down Syndrome and their families who I know are truly amazing.

But the incendiary, extreme positions and actions you ascribe to "typical pro-choicers" who've commented here are unfounded and unacceptable. I'm sure it's some kind of Internet record of civility that it's taken almost three years before someone compares someone else to Hitler, but I will not stand for that crap on my site. If you have something civil or substantive to add, feel free, but otherwise, consider yourself on notice.

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