Yesterday, the United Nations urged the world to celebrate the annual “International Day of Persons with Disabilities.” This year’s theme, “Break barriers, open doors: for an inclusive society for all,” is a lofty call to care for and celebrate the dignity of the estimated 15 percent of the world population who live with a disability of some type.
A quick glance to the not-so-distant past suggests that there are, in fact, tangible reasons to celebrate progress made toward fully respecting those who live with disabilities. In our workplaces, increased opportunities exist where they did not before. In our families, greater support has been gradually extended to those who care for loved ones. In our hospitals and clinics, dedicated researchers commit their time and talent to improving the lives of others. In our schools, children of all abilities study together more often than ever before. In our words, the demeaning language of the past is beginning to wane — at least a bit. In our buildings, unnecessary boundaries to access are slowly being broken. In our courts, the rights and dignity of those with disabilities are defended, whether under the provisions of the landmark Americans with Disabilities Act or other articulations of the premise that “created equal” should know no arbitrary limitations. All of this is worth celebrating.
Yet, in many ways, the celebration of the “International Day of Persons with Disabilities” saddens me, because underlying its lofty aspirations and pious proclamations lies a fundamental hypocrisy that often goes unnoticed or ignored. The announcement of this annual event calls for “full participation and equality” and asks all to “change attitudes and approaches” and to “celebrate the contributions made by persons with disabilities.” But, the footnote left out of these declarations is the reality that, under the law — the law that we depend on to protect the vulnerable — these rights belong only to those with disabilities who have been allowed to be born. They belong only to those who have survived the gauntlet of a prenatal diagnosis of a disability and the pressure to end their lives before they have drawn their first breaths.
Children with Down syndrome — protected and supported by law once born — are among the most vulnerable of all. According to some estimates, as many as 90 percent of such children are never born. Those diagnosed before birth with spina bifida, cleft palate, Trisomy 13 or 18, sickle cell anemia, hemophilia, cystic fibrosis, and congenital heart defects – to name a few — are also at risk because they bear the twin vulnerabilities of fragile health and extreme youth. In a sad irony, as we celebrate ever greater medical treatment and legal protection for such infants after birth, we have also become ever more effective and efficient at preventing those births from happening. As I read about advances made in earlier pre-natal diagnosis of even more conditions — including autism, genetic predispositions to cancers, and other existing or potential challenges — I want to rejoice that medical knowledge is being put to good use in a way that will enable earlier interventions or therapies. But, when I know that the intervention will so often be the incongruously named “therapeutic abortion,” it is fear and not hope that seems appropriate.
As those who advocate for the rights of those with disabilities speak out with passion and conviction, I am gladdened by the way in which that advocacy is rooted in the cherished, yet fragile, ideal that the way we treat the most vulnerable among us is the true measure of whether we believe in the inalienable dignity of the human person. Yet, I wonder why so often this advocacy does not extend to those with disabilities who are not yet born. Even among those who advocate for the rights of the unborn, I wonder why many would make an exception for unborn children with disabilities and argue that, while abortion is regrettable, the protection of the right to life should not be extended to them in the same way as others.
As we look to the future, our ability to see the medical future of our children will grow more and clearer. The International Day of Persons with Disabilities is certainly an appropriate time to consider what we will do with this clarity and how we will best defend the sacred vulnerability of generations to come.
— Lucia A. Silecchia is professor of law at the Catholic University of America at the Columbus School of Law.