Disability Studies Quarterly Blog
Review by Anna Barritt, University of Oklahoma, Email: firstname.lastname@example.org
Keywords: parenting, down syndrome, feminism, reproductive choice
Unexpected: Parenting, Prenatal Testing, and Down Syndrome is the legacy of feminist researcher and disability activist Alison Piepmeier, brought to life by George Estreich and Rachel Adams. Before her death in 2016, Piepmeier embarked on the important work of not only challenging the available narratives surrounding women’s reproductive choice and prenatal testing, but also the cultural understanding of Down syndrome and personhood. The book includes Piepmeier’s original research and analysis, largely drawn from stories and interviews with parents of children with Down syndrome as well as her own parenting experience, and poignantly ends with tribute chapters from Estreich and Adams that follow up on Piepmeier’s life and legacy.
Piepmeier’s positionality as a researcher of both feminism and Disability Studies, a parent of a child with Down syndrome, and a person with a debilitating cancer diagnosis (that led to her death in 2016), makes her uniquely poised to explore the tensions of this book. Much of the work of chapter 2 distills a wealth of complex Feminist and Disability Studies theory to highlight the inadequacy of the available feminist discourse on reproductive choice, which often relies on stereotypes and bad information about disability. This is a welcome and needed critique of feminist discourse, but she does not stop at critique. Piepmeier advocates for a shift away from the simplistic language of reproductive “choice” and towards a “more communal, social-justice-oriented discourse of reproductive justice” (58). It should be made clear that Piepmeier remains firm in her support of the right to abortion care. The argument at hand is not about the right to choose, but rather about the insufficient support and narratives available to parents facing a disability diagnosis. Feminist scholars, Piepmeier argues, must resist the oppressive stereotypes about disability that these narratives have perpetuated and instead engage in conversations that “embrace, rather than fear, the complexity of reproductive decision-making” (37).
In chapter 4, Piepmeier takes on the popular genre of life writing as a double-edged sword for people with intellectual disabilities, especially memoirs of parents’ perspectives. In line with the overall objective to complicate available cultural narratives, Piepmeier acknowledges that memoirs can function as sites of resistance, but can also become sites of dehumanization when overly focused on grief and rely on the medical model of disability (85). Another interesting feature that Piepeimer begins to explore toward the end of her life was the troubled boundary between disability and disease, as her brain tumor began to limit her mobility, cognition, and independence. Estreich picks up this thread in his tribute chapter, describing her cancer as “something to treat and cure” and Down syndrome a disability, which Piepmeier had defined as “an embraceable form of diversity” (112). Though disease and disability are distinct, Estreich moves forward Piepmeier’s questioning of this distinction. Neither Piepmeier nor Estreich resolves this discussion, but rather calls for a continued conversation among Disability Studies scholars. In the final tribute chapter, Rachel Adams poses a series of questions directed at Piepmeier, and speculates her answers, in an effort to contextualize Piepmeier’s research within evolving conversations of disability, disease, and reproductive technology.
Unexpected is a necessary read for anyone interested in feminism, reproductive choice, disability, and/or parenting. Piepmeier traverses these topics with both ferocity and gentleness. At the time I read this book, I was expecting my first baby after a traumatic miscarriage and was contemplating the prenatal testing options presented to me my doctor. As I grew up with an uncle who had Down syndrome, I was interested in knowing all possible information about my own child’s likelihood to have the same diagnosis. Though I knew a positive test result would not affect my decision to carry the baby to term, I admit to having concerns about my ability to raise a child with Down syndrome. Piepmeier’s descriptions of her own experience parenting a child with Down syndrome, as well as the stories of the parents interviewed in her study, altered my own expectations about what such a life could look like–an outcome that I imagine Piepmeier hoped for.
While the primary objective of the book is to explore how potential parents approach prenatal testing and how they make their decisions, readers can expect to gain new insights on the reality of parenting a child with Down syndrome, which is often more about joy and potential than the prevailing narratives of tragedy that have dominated conversations of prenatal testing. Disability scholars would surely gain from Piepmeier’s unique perspective; however, as co-author George Estreich explains in his chapter dedicated to his friend and colleague, “She wanted to spur conversation with as wide an audience as possible” (104). This is evident not only in Piepmeier’s personal blog that is referenced throughout the book, but by the ease and accessibility of her writing in Unexpected. This book is a needed contribution to the field of Feminist Disability Studies, but it is also a gift to parents and potential parents of disabled and nondisabled children alike.
This review was published as part of Disability Studies Quarterly, Spring/Summer 2022.
Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated.
Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.