Reviewed Book
Unexpected: Parenting, Prenatal Testing, and Down Syndrome By Alison Piepmeier, with George Estreich and Rachel Adams. New York: NYU Press. 2021. 200 pp.
Christine Sargent
University of Colorado Denver
This deeply personal book is grounded in author Alison Peipmeier’s own experiences with prenatal screening (her nuchal translucency test suggested the possibility of a Down syndrome pregnancy), prenatal diagnostics (she declined the amniocentesis that would have confirmed her daughter Maybelle’s Down syndrome), and the highs and lows of parenting. The interdisciplinary and mixed-methods project she pursued to make sense of her own journey into motherhood combines autoethnography, qualitative research, and literature/media analysis. The book is about more than Down syndrome, disability, and ableism, even as it is also about all these things. Piepmeier started her research and writing before receiving a diagnosis of brain cancer, which claimed her life by Maybelle’s 8th birthday and before she could finish the manuscript. Her colleagues Rachel Adams and George Estreich—who have written about disability from their own perspectives as the parents of children with Down syndrome—brought Piepmeier’s vision to completion. The story of the book, let alone the research and narrative it offers, leaves much to contemplate.
In the first chapter, “I Wouldn’t Change You if I Could,” Piepmeier sets the political and ethical landscape by sharing her story, which attests to the uncomfortable frictions between disability rights and reproductive rights movements. Piepmeier foregrounds her fierce commitment to the principle that all pregnant people should have control over their bodies and their pregnancies, a freedom shaping her own reproductive history. Maybelle was a planned and wanted pregnancy. Nevertheless, Piepmeier realized that if the amnio confirmed Down syndrome, she would have terminated, so she and her partner decided not to pursue further testing; this is the realization she grapples with and explores among other mothers as well. In the remainder of this chapter, she introduces some of her interviewees, women whose paths and experiences represent different historical turns in a well-established history of parental—and especially mother-driven—advocacy for the rights of children and adults with Down syndrome and intellectual disability more broadly.
Piepmeier goes on to argue that “prenatal testing is not what we should question, but the assumptions that accompany it” (33). In Chapter 2, she takes care to unpack the woeful inadequacies of conceptualizing reproduction as a “choice,” which nevertheless grounds movements for reproductive rights. She introduces reproductive justice as a needed rejoinder to the individualism—and ableism—embedded in the reproductive rights framing. Reproductive justice advocates for pregnant people’s right to have access to the care they need and desire. The “disabled fetus” does not operate as scare tactic for legitimizing abortion, a damaging rhetorical strategy that persists among some rights activists and scholars (while “pro-life” activists tactically instrumentalize disability to argue against abortion access, despite also opposing funding for programs that enable disabled children and adults to survive and thrive). Peipmeier treads lightly on the question of faith here, noting that “neither religion nor ideology necessarily motivated opting out of testing, although they did play a role for some” (52). Nevertheless, discussions of religion or God appeared frequently, and I wondered about this intriguing thread of commonality.
The book uses the recurring metaphor of “the table,” which frequently appeared in Peipmeier’s interviews, to unpack the practical, social, and cultural dimensions of gaining “a seat at the table.” Piepmeier’s focus in Chapter 3, on the impacts of shared—or denied—commensality, will resonate with students and practitioners of anthropology. Children with Down syndrome often receive fewer opportunities to share food with their peers, which sends a subtle but powerful message. The recurring forces of mother-focused responsibility—and blame—rear their head throughout the book. One woman, Kilolo, writes to Piepmeier about how her daughter Jade was not invited to the birthday parties, events, and other social activities that her nondisabled peers enjoyed. Kilolo laments her own failures to cultivate a sufficient social network for her daughter. Piepmeier pushes against this reading and instead asks who or what is responsible for the fact that Jade’s “schoolmates have been taught that [Jade] doesn’t belong” at their table (71).
In Chapter 4, Piepmeier examines “the problems and possibilities for the genre of memoirs by parents of children with disabilities” (81). While immensely popular with general readers, this form of writing has received little scholarly attention from either humanities or disability studies scholars. Much like Piepmeier’s interview sample, the authors are strikingly homogeneous. In a sample of 19 single-authored books, almost all published after the year 2000, every author is white and middle class; a significant number are also professors. The overwhelming whiteness of her own interviewees and the authors remains an important, albeit somewhat nascent, facet of the book. Piepmeier categorizes the texts into two overarching orientations: narratives of dehumanization and narratives of resistance, and she mobilizes a disability studies framework to analyze individual and comparative facets of these works.
In the last two chapters, Estreich and Adams speak to the reader—and to Piepmeier—as they reflect on crossing paths through shared life experiences and research interests, and how carrying the project to completion impacted them as well. Estreich contemplates the question of Alison’s voice, especially as it developed through her blog, Every Little Thing, which she continued to publish even as the advancing cancer claimed more of her language and cognitive faculties. Adams poses a series of questions to Piepmeier in the form of a letter, the genre through which they first connected. She wonders, among other things, how Piepmeier would respond to more recent developments in commercial genomic technologies. She also wonders how Piepmeier would respond to questions about the uniqueness and generalizability of Down syndrome, as it intersects with disability and with the human condition more broadly.
It does not appear that Piepmeier conceptualized this project as an ethnography (Adams describes her work as “mov[ing] toward ethnography” relatively late in the book [125]). Nevertheless, the potential connections to the wealth of ethnographic literature on prenatal screening and diagnostics, especially as they intersect with questions of disability and “health,” will stand out to readers familiar with this field. (Faye Ginsburg and Rayna Rapp’s vast portfolio of work on “disability worlds” makes several appearances, but I was surprised by the absence of dialogue with Rapp’s Testing Women, Testing the Fetus) Similarly, while neither Adams nor Estreich are anthropologists, their reflections on voice and the power of storytelling clearly intersect with conversations around ethnographic (and autoethnographic) methodology and praxis.
Unexpected is an unmistakably compelling and eminently teachable text. Piepmeier’s prose is beautifully accessible, and her expertise in writing for the public shines through. She shares generously about her own life and her relationship with Maybelle, perhaps summarizing the book’s ethos when she states that “it’s parenting that’s difficult, not the specifics of parenting a child with Down syndrome” (27). The project itself, and the collaboration that enabled it to persist beyond Piepmeier’s passing, offers rich material for contemplating the nature of writing, the question of voice, and the process of authorship. As such, the book would make a welcome addition to either a methods or writing-focused course. It would also be generative to pair Unexpected with an ethnographic monograph dealing with similar issues, which could lead to fruitful conversations about genre, disciplinary/disciplined training, and citational genealogies. Ultimately, reading this book is a bittersweet experience; Piepmeier, with Estreich and Adams, radiates through the pages as a narrator, scholar, and mother. She left us with a profound parting gift.