Social Norms, Law, and Disability

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Doctors and advocates have recently argued that parents are increasingly willing to bring a pregnancy to term after a positive test for Down syndrome. They explain this change, in part, as the result of the landmark Americans with Disabilities Act (ADA), which Congress enacted to fight employment discrimination and enhance access to public accommodations. What they fail to appreciate is that these legal protections have not always brought with them the anticipated acceptance of having a child with disabilities.

Yet our analysis of birth data reveals a staggering 25 percent decline in Down syndrome birthrates nationwide after the first President Bush signed the ADA into law. Controlling for medical, demographic, and technological variables from maternal age and marital status to abortion access and prenatal care, we found that about 15 fewer children per 100,000 were born with Down syndrome in the years after the law was passed, even as prenatal testing rates remained constant. It is true that newer methods like the “quad screen” are less intrusive than amniocentesis and more accurate than chorionic villa sampling in identifying fetal abnormalities. Yet our analysis shows the absence of any clear correlation between the quality or availability of prenatal screening and the incidence of Down syndrome births. The question remains: 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 that civil rights legislation can convey — through salient media and popular culture — to people vaguely familiar with the law or unaware it even exists. These “expressive externalities” arise from public reaction to the unforeseen costs of implementing laws like the ADA. Negative newspaper and television reports seeking to justify new disability protections, or bemoaning the cost of their implementation, can reinforce the anxiety that parents describe as they await genetic test results during pregnancy. They read over breakfast the recent report of local efforts to bar a boy with Down syndrome from playing on a high school basketball team. Or they watch on the evening news this story about another teen with Down syndrome who was kicked off a plane. Accounts like these underscore the power of expressive externalities to shore up ascriptions of blame for having a child with known disabilities.

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Chapter in Opposing Viewpoints: Birth Defects (Noël Merino ed. 2014)