[Posted on behalf of Dov Fox]
Having a child is hard work. It can be especially taxing—“physically, emotionally, and of course, financially, to bring a child with [disabilities] . . . into the world and raise it,” as commentators have noted in response to an earlier version of this piece that Chris Griffin and I wrote yesterday on Huffington Post. So it is not difficult for many of us to sympathize with the genetic parents who, CNN reported later in the day, offered their surrogate $10,000 to have an abortion when they learned “the baby would need several heart surgeries” and “ha[ve] only about a 25% chance of having a ‘normal life.’”
At the same time, doctors and authors justly celebrate the increasing willingness of those who decide that, for them, it makes sense to bring a pregnancy to term after getting a positive test for a condition like Down syndrome. These advocates explain the perceived shift in social norms by noting that the landmark Americans with Disabilities Act (ADA) provides legal protections to combat employment discrimination and enhance access to public accommodations. What they fail to appreciate is that these protections have not always brought with them the anticipated acceptance of having a child with disabilities.
A study we published in 2009 reveals a 25 percent decline in Down syndrome birthrates nationwide after the first President Bush signed the ADA into law. Controlling for variables from maternal age and marital status to prenatal testing and access to abortion, we found that about 15 fewer children per 100,000 were born with Down syndrome after the law was passed. So here’s the puzzle: Why would fewer children be brought into the world just as they are being afforded greater opportunities in life?
Part of the explanation lies in the unexpected messages—what we call “expressive externalities”—the ADA conveyed through salient media and popular culture to people vaguely familiar with the law or unaware it even exists. Implicit association testing suggests that newspaper and television reports spelling out the need for new protections, or bemoaning the cost of implementing them, can reinforce—or dislodge—parental fears and ascriptions of blame for having a child with Down syndrome.
Parents might read over breakfast the recent report of local efforts to bar one boy with Down syndrome from playing on the school basketball team after expanded ADA protections. Or the evening news tells them this story about another boy with Down syndrome who was kicked off a plane. Even on a single TV network, however, uplifting depictions of teens with Down syndrome on Glee can counteract a demeaning portrayal on Family Guy.
Parents have every right to know what to expect when they are expecting. But social norms can scare us into thinking the only “responsible” decision is to prevent the existence of the very class of people in need of the law’s protection. We need stronger efforts to offset the distorted public understandings of people with disabilities that persist.