// November 9th, 2005 // Kids, Life, Politics

I was reading an interesting post on Mauzy’s Musings about termination of pregnancies with a diagnosis of Down Syndrome and thought I’d put down my thoughts – it’s an issue I feel very strongly about.

I do support the rights of women to terminate their pregnancies – I’m a pro-choicer from way back. But the estimate is that about 90% of DS pregnancies are now terminated because of pre-diagnosis. To me, eliminating people who have a particular condition is not a “cure”. It’s actually genocide. Especially considering that these are all late terminations because amniocentesis cannot be performed until 15-18 weeks of pregnancy. This means that the mothers have to take a tablet to first kill the fetus, and then they have to actually go through an induced labour to remove it.

Apparently in Ireland because it’s a Catholic country, there are huge numbers of people with DS and other disabilities. We are losing that diversity in other Western countries. It’s like the thin end of the wedge of eugenics. Another example of our society’s obsession with physical perfection.

I don’t blame the mothers who are having the terminations, but rather the medical profession that gives them three days to choose and no real information about DS. For many people it’s the first time they’ve really thought about it. If they had a chance to go to the Down Syndrome Association in their area and meet some kids with DS, I know some of them would change their minds.

Apparently an actual cure for DS is not too far away – it will be one of the easier genetic modifications as it involves a whole gene. I really believe our children will be the last generation of kids with Down Syndrome. And that makes me feel really sad. But there’s a big difference between a real cure and what is happening now.

Phew! That was a bit heavy for Jemsweb – back to the inane drivel next post I promise.

6 Responses to “Genocide”

  1. acp says:

    Good on you for sharing your thoughts, and experiences, and bringing this saddening practice to light. There is nothing wrong with getting heavy occasionally.

    It’s true that it is a horribly superficial, “perfection” obsessed society, which we are all victims of in varying ways, but it pays to be aware and then choose one’s resistance as considered. Archie certainly has not been the end of anyone’s world – or even him having DS is not the end of one’s hopes and aspirations for him.

    Having known you guys and seeing the world through your love and understanding has certainly changed my own life. As if I then needed it, but also having Archie in my life has only reaffirmed what you have stated today.

    Love to you all!

  2. noo noo says:

    I totally agree with everything you say, Emily. There is so little information available for parents with a pre-natal diagnosed of DS, except for that being delivered by doctors who probably have had very limited or no contact at all with children with Down Syndrome and quite honestly don’t know what they are talking about. I think it would be very useful if all obstetricians and radiologists were required to attend a DS playgroup at least once.
    And maybe it would help to form a group which could visit parents facing the choice, in order to discuss the realities and the joys of bringing up children with Down Syndrome. Time for a campaign!
    For me, Archie has been a total joy since the day he was born. And he has already in his short life brought so much happiness to the whole swalkerlong/wright family unit and friends. I guess it would be nice for him to have less challenges ahead, but that is certainly not a justification for antenatal genocide! If that was the case children with hearing, visual or physical disabilities could all be eliminated before birth.

  3. tricia says:

    Thanks for your thoughtful post and to the thoughtful responses. Last year, we had an amnio, with the thought that we would terminate the pregnancy if there were “problems.” It had to do with living so rurally (we are four hours from any major medical facitily), not having a stable family structure for support, blah blah.

    I think having a child and becoming a parent were such abstractions for both of us, until it happened. Knowing what we know now (“Wow, you *can* love your baby even more than you love your dog!”) and talking to folks and being exposed to things like Jemsweb, nothing would be a foregone conclusion anymore.

    Archie shares his birthday with my wonderful mom. Bless ‘em both.

  4. Naomi says:

    Thoughtful post. I am pro choice and always have been.

    I had the triple screen (AFP) test when I was pregnant with Callum and remember being so glad that it came back as normal as I really didn’t think I could cope with a child who had special needs. If I’d had the amnio we’d have probably ended up terminating. I had zero knowledge about Down syndrome and a quick scan of sites that come up from google with all the could go wrong medical conditions listed would have had me running for the hills. We found out that Callum had DS within a hour or so of his birth – the thought of giving him up or not accepting him never entered my head. He was mine and I loved him, end of story.

    We did decide to do a CVS test (link an amnio but done in the 1st trimester) when I was pregnant with Kieran. I had to know if anything was wrong, mostly for me peace of mind. We talked about what we’d do if it showed that somethings was wrong, but we never came to a decision, I still don’t know for sure what we would have decided but in my heart I don’t think I could have terminated.

    I recently read a story on an online web forum from a pregnant woman saying that she was slowly getting over the loss of one of the twins she’d been carrying. Being nosey I checked back in previous posts to see what happened. I found out that she’d purposefully decided to “reduce” the pregnancy because one of the babies had Down syndrome. I felt physically sick when I read it, I don’t know why it hit me so hard. I wonder if she’ll ever tell her child that they would have had a sister but she wasn’t perfect so they got rid of her.

  5. hers says:

    Isn’t it wonderful to have your own space to say something. Belief is such an important quality for humanity. All power and love to you and your family.

  6. Rebecca P. says:

    I am so disappointed by what the medical world deems as a technological breakthrough. Is this really improving the quality of life (NO)? This is only providing woman with more reasons to consider terminating a life simply because he or she does not meet the standards or ideals of the parents or societies desire to strive for something perceived as flawless.

    I believe that a woman who is not assertive enough or sure enough that she could parent a child with DS could be pursued by her doctor or others to terminate simply because the technology to diagnosis is so much earlier. I cannot exactly put my finger on the formal benefit of such technology because more often than not, parents of DS children do not know they have it until they are born.

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