Wednesday, April 3, 2013

Down Syndrome, Comments, and Fellini

Allison Piepmeier, a brilliant academic writer friend of mine, and the mother of the incomparable Maybelle, had a piece published in the New York Times'  Motherlode column a couple of days ago. Allison wrote the piece as a response to the recent law passed in North Dakota outlawing abortion for fetal conditions such as Down Syndrome. I won't review what she said, as the piece is short, and I'd urge you to read it yourself, but what has stuck with me in particular all day long are the more than 200 comments that I made the mistake of skimming through after reading Allison's intelligent words. Filled with vitriol -- on both sides of the abortion issue -- they are, with few exceptions, some of the most ignorant and upsetting opinions and viewpoints that I've read in a long, long while. They are the stuff of depression, the stuff that drives some of us in the disability world to want to retreat into caves, overwhelmed at the prospect that no matter how hard we try, we may not ever fully engage people into valuing the lives of people with disabilities. Full inclusion might never happen, our children and fellow citizens might continue to be commodities, burdens that inhibit productive life, argued over in the marketplace.

I'll say here that I am particularly repelled by Dakotan lawmakers who have passed some of the most draconian laws against women's reproductive rights in the country, but I am also disturbed by those in the disability community who champion the law as, somehow, a victory for the most vulnerable. I have been asked the infamous question about Sophie and abortion -- whether I would abort her if I'd known what would happen. To this question, I will only answer that it's impossible. It's impossible for me to answer this question. I am who I am because of my daughter's strange journey on this planet, and I am who I am, living questions, not answers.

And now let me retreat to my cave. I'll be watching this:


  1. In all honesty, I don't know what I think about the article, or the viewpoints and rationalizations of the moms within it. The article is intelligently written, but I just don't know. It's an incredibly complicated question. And Down's syndrome is so far removed from my life with Maggie, that I have trouble understanding the complexities. I started to read the comments. They start out quite cogent and quickly go down hill. I just had to stop.

  2. Of all of the comments I read, the one which made the most sense to me was one of the shortest and simply said that this is a matter for no one but the family involved and their doctors.
    Dammit! Why do we have to fight for women to have control of their own bodies and own lives over and over again?
    Maybe that's a simplistic way to look at it but doesn't it all boil down to that?

  3. The last line of Piepmeier's piece says it all for me. This is the thing the religious get wrong over and over again. I won't read the comments because that is the where the unhealthiest people dwell.

    I want to dance with the best dancer in Rome. Pronto.

  4. I will be interested to hear what you think if you read Andrew Solomon's chapter on Down's Syndrome in "Far From the Tree." He asks similar questions with grace and a desire to investigate rather than dictate, like so many commenters do. I agree wholeheartedly with Ms. Moon on this issue and I love your response when asked if you would have aborted Sophie. Although I think my answer would be more along the lines of, "Who the f(*k do you think you are to ask me a question like that?"

    1. Kario - None of the parents I know in the Down syndrome community have cared much for this chapter in Solomon's book, though many thought the rest of the book was interesting. Alison Piepmeier & Lisa Morguess both reviewed it and both linked to a lovely review in Slate. I admit I haven't read it, mostly because of the issues all 3 reviews outlined, but commenting here in case Solomon is held out as some kind of expert.

  5. I seriously can't believe anyone would ask you that question? Good lord.

  6. How could anyone ask you such a question? I cannot fathom it.

  7. The comment section of many pieces of writing are terrifying to read. I mostly don't, because of the dark depression that usually settles over me. I love you ELizabeth.

  8. Ugh I made the same mistake of reading those comments and it made me so sad.

  9. Yes to this: I will only answer that it's impossible. It's impossible for me to answer this question. I am who I am because of my daughter's strange journey on this planet.

  10. The article was excellent! I made a special effort to read some of the comments and most of them didn't seem TOO terrible -- but maybe things have mellowed a bit since you looked. Of course there were some complete ignoramuses too. I have a friend who is a metro columnist at a major newspaper and she calls commenters the "bathrobe brigade." They are not to be taken too seriously, because like many on the Internet they are shielded by anonymity and this allows their darkest, most provocative impulses to prevail. Fortunately in real life most of them are moderated by social convention!

    (Your blog is doing that thing again where it eats my comment halfway through. Argh!)

  11. Elizabeth, thank you for rallying your community here to read my article. Folks, I suggest you avoid the comments. I like the idea of them as the "bathrobe brigade"--imagining them all in their bathrobes at least makes me smile! (Sort of like that advice to public speakers that you imagine everyone naked.)

    I love your answer to the question about abortion, Elizabeth: how in the world could you answer that question?

    And let me play a footnotey role here and say that I often think of you and Eva Feder Kittay together, Elizabeth. Eva made a comment on the Motherlode piece, and she's a brilliant philosopher and mother of a child with significant cognitive disabilities (facts that she never allows to be separated--when she gives public lectures she puts a picture of Sesha up on a Powerpoint slide so that folks have to see Sesha as they consider Eva's ideas about humanity and full personhood). Eva and her son (Leo, I think, although the book is in my office) wrote a great piece together several years back in which they grapple with the question of prenatal testing and abortion. Eva says that women absolutely must have the right to terminate pregnancies. Leo agrees, but speaks as a sibling, and says that Sesha is his sister--he loves her--she has helped to define his reality and his sense of himself in the world. He says that if she'd been terminated, he would have lost something crucial, but also that he would feel that one has to be "good enough" to belong to their family. Some of the unconditional love that defines his sense of family would be gone. Interesting stuff.

  12. I must admit that I couldn't finish the article because it upset me too much. When I was pregnant with Jude (at 41) I refused to take the tests. I didn't want to know if he had Downs Syndrome. I knew I couldn't abort him. And I didn't want to be faced with the option. And I thought that if he was born and had it, I would be strong enough to handle it, and give him the best life I could. Who knows if this would have been true. I agree with the others, how could anyone ask you that question? What on earth were they thinking?

    And I must say, Giulietta Masina in Nights of Cabiria is one very most favorite performances in film. A fabulous place to take refuge!

  13. Hi Elizabeth,
    I'm a little late on my comment on this - was thinking about it for a bit. I'm a lover of poetry also so I thought I'd leave a piece of a poem by William Wordsworth that your post put me in mind. I first saw it in the book "Push" by Sapphire:

    If Thou be one whose heart the holy forms
    Of young imagination have kept pure,
    Stranger! henceforth be warned; and know that pride,
    Howe'er disguised in its own majesty,
    Is littleness; that he, who feels contempt
    For any living thing, hath faculties
    Which he has never used; that thought with him
    Is in its infancy. The man whose eye
    Is ever on himself doth look on one,
    The least of Nature's works, one who might move
    The wise man to that scorn which wisdom holds
    Unlawful, ever. O be wiser, Thou!
    Instructed that true knowledge leads to love
    True dignity abides with him alone
    Who, in the silent hour of inward thought,
    Can still suspect, and still revere himself
    In lowliness of heart.

    I think the bathrobe brigade are not able to get to the light in themselves, it's all shrouded over by hurt and pain. The comments don't make me depressed for myself. It makes me sad for them...

  14. So,I read the referenced article which was beautifully written and informative.... then tentatively headed into the comments will take a bit of time today for me to work this "section" through my brain. As a health care provider, with two children that the world identifies as "typical" (although in reality I firmly believe there is no such thing), I felt "somewhat" knowledgeable from my education and work experience in counseling and supporting parents as they make difficult choices when faced with the painful decision to terminate or maintain a pregnancy. My exposure to this blog and Little Wonders, however, has considerably opened my mind to how lacking both my education and work experience were in truly "educating" me about what the experience of raising a child w/ developmental disabilities entails. As all good education does, I am now, at times,more confused as to what should be done in terms of laws, legislation, programming etc. but the author of this piece reflected my personal view about what social policies (re: access to safe abortion procedures, support for families who are raising children w/ disabilities, etc.) are in the "best interest" of women who find themselves in this situation. One thing I can say from reading the comments section in the NYTimes, there is clearly a need for all of us, but most of all, those in the health care field who take on the, at times, overwhelming responsibility of objectively informing parents of their choices and continuing to care for and about them as they do so, to expose ourselves to the viewpoints of those who choose each outcome and really educating ourselves about the merits of each.



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