Because They’re Worth It

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.