How do I write what I’m feeling without passing judgment?
On the first read-through, I thought the baby had died in utero. He wrote it to be intentionally vague, until the middle of his essay, when he says that the nuchal fold screening was what caused all the problems the first time around. And suddenly, sitting on the couch on a Monday evening, trying to catch up on reading, my body electrifies with a silent howl of anguish, and anger, and blinding pain. Because I know what a nuchal fold screening is all about.
I try to tell myself that I don’t know that his baby had Downs. That I don’t really know that the nuchal fold screening is solely a test for Trisomy 21; that it could test for other things, too, that just aren’t on our radar—which, when I get on the computer this morning, indeed turns out to be the case—but it doesn’t change the essential point. The essential point being that some great conglomerate out there decided that “imperfect” children don’t deserve to live whatever life span they would be given. That their “imperfection” is a burden that people shouldn’t have to put up with. That there are no lessons to be learned, no richness to be savored, in an “imperfect” child. And that 90% of the population has bought into the propaganda.
Even organizations like the National DS Congress refuse to counter the propaganda. They don’t want to offend anybody, so they won’t say, “Hey, it’s wrong to abort a baby just because she has Down’s.” Can you imagine? An organization whose sole raison d’etre is to support and improve life for those with Down’s can’t go any farther than to say, “Let’s give people all the information, but we’re not going to take a position on aborting kids with Down’s.” It undermines all their work to refuse to take a position that these kids are intrinsically worth keeping.
October is Down Syndrome Awareness Month—an observance that gets obscured by Breast Cancer Awareness Month. It’s hard for me not to be a bit jaded about this; it’s not that breast cancer awareness isn’t important—it is—but cancer is on everybody’s radar. We don’t need “awareness” of this issue nearly as much as we need awareness of the issues related to special needs. The culture keeps spinning around the same whirlpool, and with every revolution, the special needs population becomes smaller and more marginalized. I have no doubt that if autism could be predicted in utero, the same 90% abortion rate would follow.
And yet those of us who live with special needs know, as the rest of you simply cannot, that these lives are eminently worth living. Even children with the most severe genetic disorders—the ones that result in early death—have moments of beauty to teach those around them. The more we segregate ourselves from the disabled population, the poorer our human experience becomes.
I’m grateful, then, to those few who make an effort to bring the special needs population back from the margins. HBO is honoring DS Awareness Month with a documentary called Monica & David, about a couple with DS, madly in love, who choose to get married. It premieres on Thursday night (Oct. 14th at 8 Eastern). For those here locally, the same film is playing at the Citizen Jane Film Festival this Saturday, the 16th at 7:15p.m. (central).
Why am I offering advertisements? Because I know full well that this is something people just don’t really care about unless their lives are touched directly. As we circle that whirlpool of shrinking disabled population, we keep getting closer and closer to the point where hardly anybody will be touched directly. And the world will be more desolate for it.
Kathleen M. Basi 
We do need more awareness of this…especially of the high rate of abortion of DS babies. Thank you for putting it out there. It’s a nice tie in to pro-life month, I think.
Your daughter is so lucky to have been blessed with such a loving mother. When my girls were little, I had a daycare in my home and one of the little boys had Down Syndrome. He was the light of our days. He was so loving and we became very close to him. We eventually moved here to Florida and have lost track of him over time. When my daughter had her routine tests done when she was pregnant, the nurse called to say that the test showed positive for Down Sydnrome and she needed an amnioscentesis. I remembered her first words to the nurse were “Why do I need the amnio if it doesn’t matter the outcome. I am keeping my baby no matter what”. If she had made any other decision than that, we would not have our beautiful 5-year-old grandson—who does not have Down Syndrome. The test must have been a false-positive. However, we were prepared to fully love him no matter what. Just know that not all people agree with those that find life disposable. Praying for you.
Patty, I think this is what bothers me the most–the assumptions made by the Ob/Gyn community. How can we ever break out of the cycle if those who have most influence continue peddling the unspoken implication that kids with DS are, as you say, disposable?
Wow. I think that was one of the most shocking things when I became pregnant, were the tests for all this and how much they were pushed. Your daughter is lucky to have such a strong mother and advocate!
And not just babies with Down syndrome shouldn’t be aborted, no baby should be. Sometimes I stop to wonder how many Einsteins, Mother Teresas, and Neil Armstrongs have been aborted.
90% of DS babies are aborted??!! Yikes! So tragic… Thank you for posting this. Your heartfelt remarks are both necessary and touching. Sad that even the medical community seems to just take it for granted that parents will want to abort an unborn baby with DS.
I think that as more of us grow old and disabled, rather than making the pool smaller concerning disabilities of all kinds, it will become larger. As we get older, we are less and less afraid to stand up and speak out.
The breast cancer awareness push comes from the women’s movement which has huge PR. It’s sad that the DS group isn’t as passionate and willing to stand up and shout to the whole universe that these children are very worth keeping and loving to the utmost. Keep writing and pushing for this. The fact is, murder is murder no matter how young the victim is and abortion, euthanasia, and assisted suicide absolutely must be stopped.
Not only the Down’s children are aborted after the test- but false positives are also aborted. I have had three friends have false positives. All three were pressed- by their husbands, doctors and even mothers- to abort. None of the babies were Downs.
I worked at an inclusion school. My Downs kids were great in my sixth grade classroom. I had one young lady who asked the best questions- she could see things in history that the rest of us missed.
First time here- but the love I see is not missed on me.
Thank you for this article. May I share this link in connection with National Down Syndrome Awareness month. God bless you always!