A bill before the Indiana state legislature has revived what is becoming a perennial debate: what information should be provided to pregnant women who receive a prenatal diagnosis of Down syndrome? The bill in question proposes to ban abortions due to either the sex of the fetus or a prenatal diagnosis of a genetic difference such as Down syndrome. The law would criminalize the actions of doctors who encourage and perform such abortions, not women who obtain them.
As the parent of a child with Down syndrome, I am watching the debate over this bill with fascination. As someone who believes the prenatal medical profession needs a good whack across the nose on this issue, I can see some value in the legislation. But as someone who lives very far from Indiana, I’m not inclined to get too worked up about it.
However, some of my fellow advocates in the “Down syndrome community” are worked up about it. In the past, I have criticized a vocal group of campaigners for the Lettercase booklet, an informational brochure intended for pregnant women who have received a Down syndrome diagnosis. The Lettercase booklet has caused controversy because it explicitly mentions the possibility of abortion. Many parents, siblings, and friends of people living with Down syndrome view mention of abortion in this context as a betrayal of the work we do together to demonstrate the value of such lives. That the booklet is supposedly meant to convince vulnerable women that life with Down syndrome is “not so bad” makes the abortion mention seem all the more out-of-place.
Abortion is not exactly a secret in America. Estimates vary, but what’s not in dispute is that a monstrous number of children diagnosed with Down syndrome are aborted every year. It’s not terribly complicated. For most, Down syndrome is a death sentence. Those of us who know the value of these lives feel like we have a duty to defend them. That leads many to call us pro-life, and we are.
But it evidently bothers some to be lumped in with the rest of us. In an attempt to avoid falling prey to the ideological presets of abortion politics, the Lettercase campaigners insist on calling themselves not pro-life or pro-choice but “pro-information.” Dominican University history professor David Perry says the pro-information team “is a coalition of pro-choice and pro-life (and unsure) folks who respect the right of women to terminate their pregnancies after a pre-natal diagnosis, but really don’t want them to do it.” As the pro-information team are generally, like Perry, parents of people with Down syndrome, there is a whiff here of a desire to achieve some social separation from guys like me. That is to say, absolutists. As one blogger has written, “Pro-life should not hijack pro-information.”
I continue to be puzzled by this point of view. Without rehashing the last few years of debate, let me say this: There are other informational pamphlets out there that don’t mention abortion and that are competing with the Lettercase booklet for the attention of doctors, advocates, and parents. Why can’t we use them? Oh, yeah. The Lettercase campaigners say doctors won’t distribute any booklet that doesn’t mention abortion. Call it the abortion extortion. To pro-information advocates, mentioning abortion is a lesser evil than not providing expectant mothers with “up-to-date information” about life with Down syndrome, so they willingly serve as Lettercase cheerleaders. But in supporting the abortion language, these parent-advocates put themselves in the unenviable position of having to defend a woman’s right to abort a child that has been diagnosed with the same genetic syndrome affecting their own children. Sticky.
The problem here is not just that members of the pro-information team have painted themselves into a personal ethical corner. We all do that from time to time (especially when one set of rigid, reflexive beliefs bumps up against another). No, they are actually doing something worsethey are diluting the message that life with Down syndrome is precious. This is a message that we continue to struggle to convey. As parents of these children, we should all be pulling on the same oar.
I confess that I once thought that focusing on “information” rather than “life” was the way to go. But the experience of raising my daughter in a world disinclined to view her as anything more than a potential financial burden on societywhich must one day pay the freight for her parents’ beliefshas disabused me of this notion. Many parents of children with Down syndrome can’t bring themselves to oppose the pro-abortion orthodoxies of our culture for fear of being branded as crazed pro-lifers. It’s a bit like the old line about a liberal being someone who won’t take his own side in a fight. But this fight demands that people of conscience take a side.
The pro-information team wants pro-lifers like me to fully digest and make peace with the fact that abortion is legal. But I want them to realize that we are in the midst of a bitter battle for the rights of our children to be born at all. And while there are many fine doctors in the world, the medical professional organizations that refuse to sign off on informational pamphlets that don’t explicitly mention abortion don’t deserve our compliance. They deserve contempt.
Matthew Hennessey (@matthennessey) writes from Connecticut.