put his finger on the distinctive temporalities of illness and disability that writers like Alison Kafer, Ellen Samuels, and Robert McRuer call “crip time.”2 Borrowing from queer theory, these scholars observe that illness and disability can make time slow down or speed up, move backward or sideways, or repeat itself, confounding traditional notions of progress, development, and uniformity. Alison worked with the queer-crip understanding that she might not have the gradual, elongated unfolding of a conventional life span. She lived with the patient’s sense that time is not her own, given how much of it is spent waiting in the shadow cast by the uncertain pronouncements of medical professionals. She also lived with an awareness of how unpredictable a body can become, as the threat of exhaustion and debility challenges the attempt to plan a future program of research and writing. These unusual temporalities can make queer-crip writing feel open-ended, unpolished, and raw. They also invite us to think about the devices used by those who are healthy and able-bodied to mask the fact that all futures are uncertain.
Reading Alison’s drafts of the chapters that became this book, we kept tripping over markers of the unfinished. Both the wit and the hurry, the urgency of prognosis and the linguistic skill she brought to it—a skill under siege by the very illness she sought to narrate—are evident in the placeholders embedded in her drafts:
No epigraph yet.
Brilliant person
But. . . . [transition]
Another person said xxx.
BOOK: Nameless.
That urgency—“always, always to write”—marks her notes to herself, her assessments of what the book was, and was becoming. Her notes mark time and are marked by the consciousness of time: “Synthesis as of 3:00 on May 12,” she wrote to herself once. She was keenly aware of the book as an evolving thing, and in her notes, we see a conversation with herself, an urgent meditation on the book’s direction.
Alison’s original book proposal, shared with us by her editor Ilene Kalish, focused on reproductive decision-making, in Alison’s words, “a feminist disability studies examination of decisions parents and potential parents have to make.” At that time, the book’s proposed title was A Choice with No Story: What Prenatal Testing and Down Syndrome Reveal about Our Reproductive Decision-Making. That focus on reproductive decision-making grew out of Alison’s experiences of pregnancy, birth, and motherhood with Maybelle, who has Down syndrome. It also grew from her extensive interviews of mothers who, facing a diagnosis of Down syndrome in utero, chose either to continue pregnancies or to terminate. As Alison’s original title implies, the mothers attempting to make sense of this situation did so in the absence of narrative—or, more precisely, in the presence of conflicting narratives about the meaning and value of a child with Down syndrome.
In an enthusiastic review of the book proposal for New York University Press, Rachel called Alison’s work “an important and timely project.” She described it as a study of prenatal testing that would collect “the rarely-heard stories of parents and prospective parents who have confronted decisions about a fetus diagnosed with Down syndrome. [Alison] questions the rhetoric of ‘choice’ that surrounds prenatal testing, showing how decisions are shaped and limited by familial and cultural attitudes, as well as available resources. Although prenatal testing is designed to detect a range of genetic conditions, the book zeroes in on Down syndrome because it so often becomes the exclusive focus of the rhetoric and popular understanding of genetic tests.”
In the fall of 2015, editors and other reviewers shared Rachel’s enthusiasm, and soon the project was under contract. Though Alison questioned how much of the manuscript would be personal, or how the personal and the academic modes would fit together, she was clearly moving toward memoir, focusing on her own experience of motherhood and illness:
Chapter 5—sitting/eating together. We’re together @ a moment of sadness. How much should this be about me? How much of any of this is me? What emphasis? I think the emphasis always has to come back to MB [Maybelle], and my head.
But I do think our scholarship is crucial. Who do I see? How does their work connect to what I’m exploring?
“MB, and my head”: these words could be taken as shorthand for two aspects of Alison’s life. She was a parent and a patient, and as such, she realized that her daily life was permeated by unanswerable questions. What is the line between illness and disability? How did Alison’s challenges with language, brought on by a brain tumor, differ from Maybelle’s, associated with Down syndrome?
Maybelle and Alison Piepmeier. Source: Trey Piepmeier
Alison had always explored other kinds of writing. She wrote poetry in college, and as George argues in his chapter, her blog contains some of her best writing. Read in sequence, the blog entries can be understood as a single essay. (Indeed, the blog can be seen as a proving ground for this book, a place to mix the minutiae of everyday life with feminist analysis.) But for Alison, this was a new kind of book. It both differs from, and grows out of, her work on nineteenth-century women’s writing (Out in Public: Configurations of Women’s Bodies in Nineteenth-Century America); on zines (Girl Zines: Making Media, Doing Feminism); or, with co-editor Rory Dicker, on third-wave feminism (Catching a Wave: Reclaiming Feminism for the 21st Century). It shares with previous work her interest in women, the body, popular culture, and activism.
From the beginning, her insights about gender were inflected by an understanding of the intersections of race and class. As a scholar trained in literary studies, Alison was keenly aware that representations matter. Not only do they reflect prevailing social beliefs, but they also have the power to unsettle, and even transform, dominant attitudes. She was interested in women as social and historical agents, as makers and doers actively engaged in shaping the realities under which they lived. Alison also knew that feminist knowledge is situated knowledge. Even at her most scholarly, she was always present in her writing—her vivid sense of voice and her passions, commitments, and beliefs evident on the page. Her new book was meant to connect her scholarly and theoretical preoccupations with her personal experience and to reach beyond a purely academic audience.
As Alison’s conception of the book evolved, the idea of story remained, a common thread among her varied approaches. She was fascinated by the power of narrative to help and to harm. A parent’s experiences can yield stories that dehumanize their subjects, particularly in the case of intellectual disability, but a different story about the same experiences can recognize dignity and personhood, replacing reduction with complexity. As Alison showed in her study of parent memoirs, these opposing impulses often coincide. While Alison never had the chance to fully theorize her interest in narrative, her approach was in keeping with scholarship in disability studies and medical humanities that recognizes the power of personal stories to serve as a kind of embodied theory. As Elaine Scarry wrote in her influential study The Body in Pain, although pain is a source of unmaking that robs the subject of language, the world is remade through artistic creation.3
Alison understood the inevitability of story, the way it functions to organize experience and beliefs.4 She recognized how those who have experienced pain or oppression use narrative to make and to remake an imperfect social world. Her work intersected with the project of narrative medicine in acknowledging the reparative power of telling stories and learning how to listen and interpret the stories of others.5
A particular concern in this book is how women use stories to organize their experiences of pregnancy and motherhood. Alison sees how the memoir can challenge well-known narratives about illness and disability, redefining what it means to live with physical and cognitive differences. In this book, Alison analyzes stories about
