Guest poster Amber Cantrell is a student at the College of Charleston, majoring in Women’s and Gender Studies. The research project she discusses is partially funded by a Student Undergraduate Research Fellowship from the College.
Although this might be somewhat disappointing, rather than Alison Piepmeier authoring this blog post, it is in fact her undergraduate research assistant. However, I am writing a lot about her, so perhaps that will be a small consolation prize. My name is Amber Cantrell, and I’m a junior at the College of Charleston eagerly benefiting from working with a feminist scholar like Alison.
This summer Alison and I are working on a project about prenatal testing. Initially, we’d thought prenatal testing was going to be one chapter in Alison’s book project about the intersection of feminist disability studies and parenthood. As we’ve begun to explore all the different topics that Alison and I find interesting about prenatal testing, the information gathering stage seems to have exploded rather than becoming focused and topic specific. As the person who is primarily doing the research that Alison requests, I have delicately pointed out that this chapter on prenatal testing may really a book project on prenatal testing.
Our plan for the summer was to talk with parents of children with disabilities, particularly Down syndrome, because we wanted to hear their stories. How did prenatal testing function as part of their pregnancy, if at all? How did these prospective parents make their decisions about prenatal screening, diagnostic testing, and potentially terminating their pregnancy? In particular, what sorts of narratives—stories from their doctors and families, stories from pop culture—shaped their decision making processes? These questions are intensely personal and potentially upsetting to those who might have chosen to terminate a fetus that they had anticipated with excitement until they found out about a particular disability. Alison and I hoped we could secure 12 interviews, but we thought this might be ambitious; we thought that perhaps only a few people would consent to talk about their stories.
When Alison contacted some of her own friends and acquaintances as well as posted our interview request on her blog, we received 9 responses in the first 24 hours. Within the next 12 hours, we had our total of 12 people who had contacted us with their desire to participate in this project. And people keep responding. People who Alison has never even met have agreed to be interviewed—people from around the country, some who are living happily with large families, some who are dealing with the death of a child with disabilities, some who are pregnant again and considering testing from a new perspective.
Their generous willingness to talk about their experiences is something that Alison and I are finding overwhelming (in a good way). Why do so many people want to be a part of this project? We think this is evidence that we haven’t developed a cultural space for women and their partners to talk about prenatal testing, which many have come to consider an inherent part of pregnancy. As a society, we need a space to grapple with the implications of choice and what it means, especially when statistics show that upwards of 85% of pregnancies with Down syndrome are terminated. Alison and I are both pro-choice feminist scholars, but we recognize that although the word “choice” implies something easy—a quick decision—in the case of prenatal testing and disabilities, the process is anything but easy or quick.
We’re eager to hear these stories, to start collecting and examining the complexities and paradoxes that these parents are sharing.