Peaches, cream, and Down Syndrome

In making the case that aborting babies with genetic disorders amounts to eugenics, Ross Douthat writes:

Ezra writes that it's "very unfair" to apply the word "eugenics" to, say, the contemporary trend toward the elimination of Down's Syndrome by selective abortion, because "traditionally, the term has been used to denote efforts to direct or encourage breeding by high status, socially dominant individuals in order to select for their characteristics, and discourage breeding by low status individuals (criminals, the insane, blacks, etc) in order to wipe their characteristics from the gene pool. For Ross to conflate that with parents who decide to abort infants with medically disastrous genetic mutations is a real stretch."

First of all, Down's Syndrome is not a "medically disastrous" genetic mutation, unless you take an extremely broad definition of the term "disastrous."

Between the amount of money spent on supervisory care for a baby with Down Syndrome, the amount of money spent on associated medical ailments for a baby with Down Syndrome, the extreme mental retardation and physical disabilities of a baby with Down syndrome, and the very early deaths of a very large percentage of people with Down syndrome, I'd say that Down Syndrome is extraordinarily medically disastrous unless you're very heavily invested in the idea that aborting a baby with Down Syndrome constitutes a type of eugenics.

Comments

[JimPortlandOR]

This eugenics argument is only a couple days old as a current meme, but it's old already.

Ezra is trying to fight the good fight, but the distinction he's trying to clarify will be lost in the clatter.

Spade: this eugenics thing is just another tactic in the ongoing war against abortion and allowing parents (or the woman alone) to determine the path of a pregnancy.

And, along the way, it is also a very feeble attempt to discredit somehow the concept of progressive politics. This is so feeble that failure of this attempt will be laughed off as the 'death throes' of a dying hyper-conservative theo-con movement.

But we will have to fight this battle like other battles on choice for women and families to be free of government dictates. Expect the Religious Right to be offering laws that prohibit abortion of fetuses based on genetic abnormalities detected with modern tests - much broader than just Down's Syndrome.

June 4, 1940: We shall not flag nor fail. We shall go on to the end...we shall fight on beaches, landing grounds, in fields, in streets and on the hills. We shall never surrender...

[Kathy G.]

First of all, it's Down Syndrome, not Down's Syndrome.

Secondly -- Brian, I am appalled by your ignorance about Down Syndrome, and the not-very-enlightened attitudes your post exhibits. Yes, Down Syndrome is a serious disability, but to call it "medically disastrous" and harp on how "costly" it is is a very loaded and problematic value judgment.

The fact is, most people with Down Syndrome have IQs in the mild to moderately retarded range -- very few are in the severe or profound range. People with Down Syndrome are at higher risk for a range of physical problems, but proper physical therapy, medical care, and education at an early age has dramatically improved their health, life span, and cognitive functioning.

In a former life I was a social worker with people with developmental disabilities so I know something about this condition and about disability in general. My clients with Down Syndrome were actually among the healthiest and highest-functioning of the developmentally disabled population I worked with. Many of them held jobs and some were even able to live independently.

Really, Brian, you should take some care to learn a little about this subject before posting about it -- otherwise you're just spreading ignorance and adding to the already heavy social stigma that disabled people and their families have to bear in this society. Reading Michael Berube's wonderful book and essays about his son, who has Down Syndrome, would be a good start.

Finally, for the record I support a woman's right to abort a pregnancy for any reason including disability such as Down Syndrome, and I don't think that doing so amounts to eugenics. But I fear that too many people who choose to abort Down Syndrome fetuses act out of fear and ignorance about the condition.

No doubt about it, raising a developmentally disabled kid is rough, and believe me, I saw that very clearly with the families I worked with. But Down Syndrome is not a tragedy, nor is it a death sentence, and raising a Down Syndrome kid can have very great rewards. And personally I found it a joy to work with them. I left social work only because I saw how screwed up the system was and thought I could do more by working on things at a policy level, rather than with individuals.

[Brian]

Thanks for the spelling correction Kathy, but the fact that there's a chance that a fetus diagnosed with Down Syndrome might not exhibit the most-serious symptoms doesn't make the choice for a parent any easier. And I think you're basically making my point for me. Children with even mild Down Syndrome characteristics still have very severe (and, yes, expensive) medical problems. It would be nice if the personal and financial costs of all ailments didn't exist. But they in fact do exist, and they're the reason some parents will choose abortion. My point is that that's both tragic and understandable, but certainly not "eugenics".

[Kathy G.]

Brian, I agree with you completely that aborting a Down syndrome fetus is not eugenics and also that raising a kid with Down syndrome can be overhelming, both emotionally and financially. But throwing around terms like "medically disastrous" and "tragic" is highly stigmatizing and helps spread damaging misinformation about Down syndrome kids. The fact is that most people with Down syndrome are only mildly or moderately retarded and most have no serious physical problems (although they're at greater risk for a variety of physical problems). And unfortunately when you describe Down syndrome in such a negative, highly charged, and misleading way, you only add to people's fears and prejudices about this subject.

[Dave White]

I posted this over at Ezra's site, but I just want to emphasize that so much is now known about the condition that parents can very easily anticipate complications, be they thyroid related, hearing or gastrointestinal, or even something as serious as CHD.

We've (happily) progressed to a stage where raising a child with Down syndrome is not as difficult or heartbreaking as it was even just a generation or two ago. My fear is that, due to ignorance of the condition itself, we now have too many parents choosing to terminate a potential gift out of a misguided fear.

The state has no role in policing this, but we as a culture have a responsibility to combat that ignorance, an ignorance to which you and Ezra are now contributing.

[Brian]

If you guys are still reading, maybe you can disabuse me of this. My point is that raising a child with Down Syndrome is still a very very difficult thing on a number of fronts. Enough that I think it's fair to call it a medical disaster for many, many of the families unlucky enough to have to face it. But I suppose it's possible that of all the natal disorders and diseases that parents potentially face (or decide to abort) that Down Syndrome is the least of them. Do you guys know the answer to that?

At the same time, it's still sort of beside my point. Even if, say, only 10% (hell, only 1%) of Down Syndrome babies have extreme symptoms, the remaining 99 percent still have very serious problems. Much more serious than, say, babies without Down Syndrome. I don't see how it's stigmatizing to say that, even with all of the wonderful advancements we've made towards mitigating Down Syndrome, it's still a very serious medical issue. A tragic one. One that many parents might be perfectly capable of dealing with in theory, but feel emotionally or financially unprepared for.

[Michael Bérubé]

the extreme mental retardation and physical disabilities of a baby with Down syndrome, and the very early deaths of a very large percentage children with Down syndrome

Sigh. That "very large" percentage has been very small for quite some time now, namely, since the advent of open-heart surgery. Roughly one in six babies with Down syndrome are born with heart anomalies. But mostly they're the kind of heart anomalies that don't kill infants anymore in the industrialized world. As for "extreme" mental retardation . . . sigh. "Severe and profound" is the term given to people with IQs below 20. Most people with Down syndrome, as Kathy points out, have mild to moderate retardation.

As for the tragedy that is Down syndrome, here's some free information from the Intertubes. Keeping in mind, of course, that it's quite possible to defend reproductive rights and challenge sloppy chatter about "eugenics" from the right wing while avoiding the trap of construing Down syndrome as unspeakably tragic.

Raising a kid with Down syndrome is tough work, no doubt about it. A little tougher, on balance, than raising a kid.

Oh, and thanks for the shout out, Kathy.

[Dave White]

It's certainly true that for people who lack good health insurance and/or access to quality schooling/childhood care, raising a child with Down syndrome can be incredibly difficult, much more so than raising a child without the condition. (That said, I imagine raising any child without access to those things can be pretty nightmarish.)

However, for plenty of parents with access to all that essential and good stuff, raising a child with Down syndrome isn't as taxing as a lot of people apparently believe (if the 90% termination rates are accurate). It does look to be a bit beside your point, but it is a great (and inaccurate) exaggeration to describe the condition the way you did, as it is far from being "extraordinarily medically disastrous." Down syndrome kids are certainly at higher risk of medical complications, yes, but with what we now know, dealing with those risks isn't any more scary and/or difficult than it is when raising a kid with, say, type-1 diabetes. Both conditions are certainly very serious, but they're not "disastrous" or even really "extraordinary"---these are just kids, with a risk of serious health problems, but with a big love of life.

There's a lot to think about, for sure, but the pain and suffering of raising a kid with Down syndrome is, unfortunately, too often greatly overstated.

[Megan McArdle]

I have to agree; Downs is not a medical disaster. I think I would probably abort a Downs fetus if I had one, but it is not the same as Tay-Sachs, or other nasty recessives, which is a no-brainer. Downs kids enjoy their lives; it's their families who suffer. They don't die young any more, and they aren't profoundly retarded. They're just really hard to take care of, which is not the same thing.

[Matt Zeitlin]

What about the issue of independence. Is it at all common for Down children to become meaningfully independent from their parents? This would seem to be a huge consideration for parents, even without the medical risks and financial costs. Even if lifespan and health of people with down syndrome has increased, if independence is still highly unlikely, it would be imperious to say that those who chose to abort are practicing "eugenics" for not wanting to have an essentially unfair burden placed on them.

Again, Brian's point is well taken, for some, like Michael this isn't such a huge burden, for others it is. I think we can all agree that what's needed is choice for parents with the commensurate education about what raising children with conditions like Down is actually like.