In a recent Public Discourse article, Mark Leach responded to our column “Down Syndrome: Toward a More Successful Advocacy,” in which we discussed the failure of national Down syndrome organizations to extend their best advocacy efforts to those diagnosed in the womb, despite the fact that abortion is the primary threat to the lives of those with Down syndrome.
Leach disagrees with our assessment that the Down syndrome advocacy movement's problem is that it will not face the abortion issue head-on. He argues that a "pro-life agenda," even if it should succeed in policy, will not stop women from aborting after a Down syndrome diagnosis. It would be better, he argues, to counter the new federal mandates concerning increased prenatal testing, and to increase funding for educational outreach aimed at parents who receive the diagnosis.
We agree with a number of Leach’s points, although he also addresses arguments that we did not make. For example, we did not criticize the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC) for not being overtly pro-life. We don’t expect that of them. We do, however, hope to draw attention to advocacy that vilifies the new threat of increased prenatal testing, and yet turns a blind eye to the abortion that actually kills the baby. Likewise, we did not pinpoint the “availability of abortion” as the issue Down syndrome advocates are failing to tackle. Rather, we argued that abortion is a problem that can no longer be ignored.
In saddling our perspective with the term “pro-life agenda” and then defining that agenda, Leach distorts our message. He misconstrues the pro-life agenda as a narrow and single-minded movement to overturn Roe v. Wade, and then attempts to persuade the reader that abortion restrictions can’t save babies diagnosed with Down syndrome. We disagree with his conclusion, but we also never argued that Down syndrome advocates should take on Roe v. Wade.
He writes, “Furthermore, they criticized the NDSS and the NDSC for assuring the medical community during a consensus meeting that they were not pro-life organizations. Advocating that a fetus has as much of a right to life as any of us, and that Roe v. Wade should be overturned, however, isn’t enough.” He is correct that we question the prudence of the Down syndrome advocates’ proclamation that they would not be advocating on behalf of the unborn baby with Down syndrome; we are also critical of their failure to express strong opposition to selective abortion, the preferred “solution” of the very professionals with whom they were meeting. Just because we question their approach, however, does not mean that we expect them to proclaim support for overturning Roe v. Wade.
In our article, we suggested and recommended a subtle shift in advocacy perspective, one that looks at the baby in the womb as a member of the Down syndrome community. Is it unreasonable to ask the national Down syndrome organizations to examine their “abortion-neutral” position, which is, in fact, fully supportive of abortion rights?
There are myriad abortion policy initiatives that would not eliminate abortion, but would lower abortion rates after a prenatal diagnosis of Down syndrome. Leach mentioned one possibility in his response to our article: he suggested that $16,000 in Medicaid funds would be better spent on therapy for children with Down syndrome than on an abortion at 30 weeks. Of course, we agree. We recently supported a parent testifying against state funding for the abortion of babies with “gross malformations.” None of the local affiliates from the national Down syndrome organizations showed up alongside our representatives, despite the fact that those testifying for continued state funding persuasively described why they had aborted their babies with Down syndrome.
Leach says that
NDSS and NDSC must assure the medical community that they are not pro-life organizations. They must do so because, otherwise, such [balanced, up-to-date, accurate] information is viewed skeptically as being a pretext for a pro-life agenda. This skepticism can further result in practitioners not referring their patients to responsible, caring parent support organizations where mothers report finding the most accurate information about Down syndrome, because their physician is concerned that instead, their patients will be browbeaten with a pro-life message during a very emotional and difficult time.
Because we work with MDs, geneticists, social workers, and neonatologists, we understand this concern. The truth of the matter, however, is that where there is trust, there are referrals to responsible, caring parent organizations, like our own, that encourage welcoming a baby after a prenatal diagnosis. Even if they are initially skeptical, we know that medical professionals are willing to embrace options when they see that their patients are well cared for and supported. The national Down syndrome organizations have had local affiliates in communities all over the country for years. If they are not receiving referrals from OB-GYNs and other professionals, that is not the fault of the pro-life movement.
In our original article, we quoted Dr. Brian Skotko, a colleague of Leach, whose perspective, we believe, illustrates how and why the national Down syndrome organizations have not yet faced the problem that abortion poses for the Down syndrome community. In a USA Today column, Dr. Skotko wrote, “I care deeply that patients receive accurate, up-to-date, balanced information so they can make informed decisions. Yet, as a physician, I am not in the business of telling expectant couples what pregnancy decisions they should be making when their fetus has Down syndrome. That is their decision.”
The disconnect between advocates’ concern that parents make decisions with accurate information, and their clinical disinterest in the eventual outcome of the unborn baby with Down syndrome, is troubling. If advocacy efforts surrounding prenatal diagnosis focus only on the goal of informed decision-making, and the majority of even well-informed parents still decide to terminate, can we deem that advocacy successful? Would it be “inaccurate” to suggest to parents that while abortion is an option available to them after prenatal diagnosis of Down syndrome, it is not the best one?
If Down syndrome advocates cannot state with certainty that abortion is not the best option available, then why do they insist, along with those of us who are pro-life, that there is a problem with the rate at which babies with Down syndrome are aborted?
Leach claims that "leadership is needed to effect change in the medical community to provide balancing information, and in society to support these families." We suggest that the leadership in the national Down syndrome organizations not allow the perceived opinions of medical professionals, pro-choice advocacy professionals, or any other single sphere of influence to define their terms of advocacy. Instead, we encourage them to embrace, from the start, those for whom they advocate—those with Down syndrome. Fight for them, defend them, from the moment they are diagnosed, with the same passion and perseverance that every person deserves.
Monica Rafie and Tracy Winsor are founding partners in the work of BeNotAfraidMinistry, an outreach to parents grappling with prenatal diagnosis. Monica and Tracy are contributing writers for HLI America, an educational initiative of Human Life International. Their recent articles may be found at HLI America’s Truth and Charity Forum.