The Inadequacy of "Choice": Disability and What's Wrong with Feminist Framings of Reproduction

Abstract

The Inadequacy of "Choice": Disability and What's Wrong withFeministFramings of Reproduction Alison Piepmeier When I was intentionally pregnant, I experienced a complex reproductive decision: whether to undergo prenatal testing. Our cul tural expectation is that pregnant women have prenatal testing per formed so that they can make the choice to terminate pregnancies with "defects." Down syndrome is a condition for which much pre natal screening and testing are done, and up to 90 percent of fetuses identified as having Down syndrome are terminated. I didn't want to be faced with that choice, and so I did not have an amniocentesis. I am now the happy parent of a daughter with Down syndrome. I shared this experience in a March 2012 article on the Mother lodeblog on the New YorkTimeswebsite. The New YorkTimesis aimed at a thoughtful audience, many of whom identify as liberal. Given this readership, it wasn't surprising that many of the more than 170 online comments made about the article accepted abortion as an available option. What did surprise me is the eugenicist use to which many of these readers would put abortion. They offered the choice of abortion as a way to avoid what they saw as an unacceptable situation, having a child with a disability. Here are several of the comments: A condition that brings with it guaranteed cognitive disabilities is not something I'm willing to inflict on another human being, much less my own beloved child. FeministStudies39, no. 1. © 2013 by Feminist Studies, Inc. 159 i6o Alison Piepmeier Knowingly giving birth to a special needs child is a crime against the child. I resent having to pay for children who are going to be a huge drain on society, financially and resource wise, if the parents knew in advance that they were going to have a special needs child. I was raised to believe that knowingly giving birth to a severely dis abled or mentally retarded baby was a sin—a really terrible sin — because it harmed not just the baby (who would never have a normal life) but also the family (including siblings who would be pressed into caring for an aging disabled brother or sister, no longer "cute" in their 50s) and society (stuck with enormous bills for a life time). I still feel that way. Hopefully in time, that 92% [of fetuses with Down syndrome that are terminated] will become lOO^.1 The comments as a whole were quite diverse, but these comments here were not rare. They are examples of the ignorant, troubling, and offensive narratives that surround reproduction, disability, and par enting in our culture. For instance, readers described giving birth to a person with a disability as an act of "harm" or cruelty, even as a "crime" — deeply stereotypical framings that individuals with disabil ities might well dispute. People with disabilities were being defined principally as "a huge drain on society." The term "normal life" was used as though it were an unambiguous goal, without acknowledging the extent to which "normal life" here is a narrowly imagined con struct that does not embrace the diversity of human existence. The final comment here concludes with the clearly eugenicist hope that 100 percent of fetuses with Down syndrome will be terminated. The world, presumably, is a better place ifpeople with Down syndrome or intellectual disabilities aren't in it. Such opinions are not just a feature of the open comments sec tion of Motherlode.They crop up—albeit in more nuanced ways—in feminist writing as well. The fact is, most feminist conversations haven't gone beyond the level of this online commentary. This isn't simply an observation about feminist understandings of disability; it's about feminist framings of reproduction. The narrative of "choice" that sur rounds and defines US reproductive rights discourse is simply inade quate. During my pregnancy, when my partner and I were deciding Alison Fiepmeier 161 whether to have an amniocentesis and, presumably, an abortion if the fetus had Down syndrome, I discovered that feminist texts had little to offer me. My story isn't one that many feminists are talking about—or if they are talking about it, it is in...