Pro-choice researcher admits that aborting imperfect children creates disability rights conflicts

Years ago, Rayna Rapp discovered that her baby would be afflicted with down syndrome. She and her partner chose for her to have an abortion. Ever since then, she has been writing about fetal testing and abortion. A supporter of legal abortion who has herself worked in an abortion clinic, the reader can be assured that she writes with no pro-life bias.

In her book, Testing Women, Testing the Fetus: the Social Impact of Amniocentesis in America, she interviewed women and couples who were waiting for the results of an amniocentesis to discover whether their babies would have down syndrome or another genetic disability.

Most intended to abort if the test indicated a problem, though Rapp did describe one or two who spared their disabled babies’ lives. I have cited Rapp’s book before, presenting quotes from some of the men and women who intended to abort a baby with down syndrome.

Another article I wrote based on Rapp’s book described how some genetic counselors had qualms about sex selection abortions. Since the same tests that would detect genetic disabilities could also detect the sex of babies, some couples were aborting girls that they did not want, planning on trying again for the desired son. The genetic counselors all felt that this was not a good reason to have an abortion, but they put their feelings aside and assisted these couples anyway.

It seems that Rapp, despite her strong pro-choice stand, may have some qualms of her own. In the passages below, she discusses how tests aimed at eliminating babies with disabilities are not compatible with promoting rights among “born” disabled people. One obvious conflict is between advocating women’s choice to abort disabled children and providing disabled children who are allowed to be born with costly services in the community.

Over the years of this study, I learned a great deal about two related and tension fraught issues. The first is the need to champion the reproductive rights of women to carry or refuse to carry to term a pregnancy that would result in a baby with a serious disability. The second is the need to support adequate, non-stigmatizing, integrative services for all the children, including disabled children, that women bear. The intersection of disability rights and reproductive rights as paradoxically linked feminist issues has emerged as central to my political and intellectual work.

Here Rapp recognizes what pro-lifers have known all along – that there is an inherent “paradox” in allowing “search and destroy missions” against disabled children and at the same time advocating for civil rights and special services for the disabled who survive to be born. Disabled adults advocate for themselves, lobbying for changes in the law, everything from requiring public buildings to have wheelchair ramps to prohibiting employers from firing qualified disabled people. When society is asked to make concessions that allow disabled people to live independent, constructive lives, they are forced to act against the message that disabled people are expendable. The allocation of funds and manpower to help disabled children (and, ultimately, adults) begins to take on less of a priority as public attitudes shift in subtle ways.

Ultimately, the cheapening of life that claims the unborn extends to already born disabled people in the community. When women are expected to abort disabled unborn children, it becomes that much easier to refuse services to these children after birth – after all, the woman had “a choice”- she should be solely responsible for her baby. Why should society help? She made her bed, and now let her lie in it. The much easier, cheaper answer of eliminating disabled babies eventually becomes the default position, leading more and more people to decide that parents who choose to give birth to their disabled children should be on their own, and, by extension, when these children grow up, resources shouldn’t be wasted on them.

In a second passage, Rapp discusses how the technology that is aimed at destroying disabled unborn babies cannot be “neutral”:

It is hard to argue for the neutrality of a technology explicitly developed to identify and hence eliminate fetuses with problem causing chromosomes (and, increasingly, genes): the biomedical and public health interests behind the development and routinization of the technology itself evaluate such fetuses as expendable. Ethicists and counselors are surely right to respond that parents of such potentially atypical fetuses have a right to know as well as not to know about the chromosomal status of their fetus, and to use the information however they may wish, whether that means preparing for the birth of a child with special needs or ending the pregnancy. But the very existence and routinization of the technology implies anything but neutrality. It assumes that scientific and medical resources should be placed in the service of prenatal diagnosis and potential elimination of fetuses bearing chromosome problems.

This ties in with what I said before. A technology specifically aimed at destroying a whole class of people cannot ultimately be considered a neutral tool. The message it gives, both to the pregnant women and their partners and society in general, is going to be negative towards all disabled people, despite what pro-choice advocates may or may not intend.

Rayna Rapp Testing Women, Testing the Fetus: the Social Impact of Amniocentesis in America (New York: Routledge, 1999) 8, 59