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Stark on the page

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Is it just me or is the tone of this piece basically a “how-to” on how to test–and then “choose”–about the life of your baby with Downs Syndrome?

I remain shocked (and I hope to always be by pieces like this).

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Brigitte objects: There are a few things in that article (beyond the obvious) that bug me a great deal. Talking about women who are “at risk” or “at high risk” of having a child with Down’s syndrome takes for granted that having a child born with the condition is an unmitigated bad thing. And it is not. True, having a Down’s syndrome child is different, and perhaps more challenging, than having a “normal” child (although I’ve met plenty of “normal” children who were very challenging and generally quite the handful). But it’s not a disaster. Also, parents are not “choosing to terminate a Down’s pregnancy”. They are “choosing” to terminate an unborn baby they believe has Down’s syndrome. (How come those articles don’t mention the false positives, huh?) I don’t care how much disdain you may have for the condition and for people who are born with it; but these are human beings just like you so don’t talk about them as though they were undesirable things.

And another thing. “National guidelines say that all women should be routinely offered screening for Down’s by the NHS. Screening is voluntary, and some women choose not to have it.” They’re trying to make the women who would prefer not to test every single aspect of their unborn babies appear to be the bizarre weirdos, and that really bothers me. There is nothing wrong with not taking every test authorities recommend. Life isn’t testable. It is, or it isn’t. And to repeat myself, testing for conditions that can only be “fixed” by killing the person carrying them is not medicine.

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Comments

  1. Strange to read this, as I just turned down the test today. Granted, I am 28 so it wasn’t pushed very hard on me, but I am curious to see how much more they encourage the testing during my next pregnancies (which will be at age 30 and beyond obviously).

    I find it incredibly sad that one is considered a “right-wing, anti-feminist bigot” for calling this what it is: eugenics. What other term is there for it and where will it end?

    Articles like this don’t even pretend that it is a problem or remotely consider what a person with down syndrome must think when they read it. People with down syndrome are people with developmental delays, but they have comprehension, compassion and aren’t just stupid. They hold jobs, create art, bring joy and take great pride in the things they do in their lives. How can our society so easily say calling a person with down syndrome a “retard” is absolutely repugnant, but killing them isn’t even worth questioning? (See that disgusting Levi Johnstone accusing Palin yesterday on CBS).

    I keep telling my gay (pro-choice) brother that he will turn pro-life pretty quickly when someone comes out with some type of gay gene prenatal test (whether remotely accurate or not).

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  2. I wrote about this attitude a while ago. Here’s what the blogger Brainduck said faced with her pro-screening peers:

    It is not a Bad Thing that I was born. The birth of more people like me should not be something that society tries to prevent.

    … I never want to be in a position where I’m told I’m irresponsible for having children like me / my brother.

    Genetic *testing* is NOT treatment. Killing people isn’t the same thing as treating them, and I don’t understand how the two can so often be confused. Genetic screening is looking at two embryos, and deciding that the one more like me deserves less of a chance at life than the one less like me. Why the hell should people NOT be made to feel guilty about that? Systematically wiping out everyone who thinks like me is wrong, and I should be free to say it’s wrong.

    … If you choose to have a baby at all, you don’t get a guarantee that they will be ‘perfect’. They could have the greatest genotype ever, and be affected by birth hypoxia or a car crash or whatever and need 24-hour care for the rest of their lives because of that, and you’d just have to deal with it. If you can’t, don’t have children at all. Deciding that loving your child is conditional on it having the right chromosomes is wrong.

    My brother is affected to the point that he’s not managed several attempts to live independently, get a degree or job. I’ll probably have to look after him when our parents aren’t able. So what? This isn’t a ‘tragedy’, it’s just life.

    ….

    This isn’t being discussed, it’s just being allowed to happen under a banner of ‘individual choice’ without any thought for the wider social impacts, and often as not without much if any input from the people most directly affected by it. Yep, selective abortion / embryo destruction is an uncomfortable topic, and people don’t like you discussing it. Ben has managed to call the mother of someone with Down syndrome ’scumbaggy’ for saying that her child is as worthy of life as anyone else. If you say that selectively wiping out people with disabilities is wrong, you’ll be told you are being ‘judgemental’ and shouldn’t make people feel ‘guilty’. But this effectively shuts down a wider discussion of the issues. I’m not about to start waving placards outside clinics. That’s not what the DSA were doing. Why shouldn’t they be allowed to say that actually, life with Down syndrome can be good?

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