her own. For Alison, narrative at its best is the agent of complexity; in her evolving manuscript, she takes a complex approach, both as storyteller and as critic. Her primary commitment in this book is to understand the capacity of stories to work imaginative transformation that can have real-world consequences.
Throughout her research, she sought out and listened to a wide range of stories, told primarily by women. Alison’s method involved intensive listening punctuated by questions, comments, and affirmations. Her more finished work combines summary and analysis with long passages that allow the interviewees’ voices to come through directly. The interviews she had already completed represent a considerable diversity of perspectives on Down syndrome, including those from women who had abortions after a prenatal diagnosis and perspectives from parents of varied faith, class, and racial backgrounds at different stages of parenting. Much of that work is represented here.
With more time, Alison certainly would have thought further not just about the content of these narratives but also about their form. She was already beginning to ask about the affordances of memoir, why stories about the arrival and parenting of children with disabilities share a similar narrative arc, and the consequences of following different paths in telling stories about disability. She might well have spent time identifying the common features of women’s stories about prenatal and postnatal diagnoses and parenting children with disabilities. Among her unfinished work was an ongoing reflection on the formal similarities between stories told by women who terminated pregnancies after receiving a prenatal diagnosis and those who chose to continue. In trying to make sense of the accounts she had collected, Alison examined the common narrative devices women use to navigate the bewildering array of decisions around pregnancy, childbirth, and parenting. Eventually, she might also have considered the limits of personal stories as sources of knowledge and meaning. As the literary critic Amy Shuman asks, what are the possibilities and perils of using “other people’s stories” as the grounds for empathy and for moral action?6
If story is one link between Alison’s earlier and later visions of her project, the other is prediction. Alison’s research on prenatal diagnosis asks, in essence, what stories we bring to, and build from, predictive information. Her approach overlaps with queer critics who note the oppressive nature of a futurity organized around the expectation of heterosexual reproduction.7 Similarly, children with disabilities are often thwarted by predictions of a limited and unproductive future. They are described as “delayed” or “backward” to signal their deviation from the standard pace and developmental trajectory of more typical peers. A prenatal diagnosis may even more dramatically change how we imagine the future, usually by limiting or foreshortening our stories about the person a fetus may become. Alison asks how we understand the meaning of a future child’s arrival, whether that information is probabilistic (as in a screening test suggesting Down syndrome) or diagnostically certain (as in amniocentesis confirming the existence of Down syndrome). Even when the information is certain, what do we make of the ensuing uncertainties?
Alison approached the challenge of uncertain temporalities as a research question, but she also faced it in her own life. Despite a screening test suggesting an elevated likelihood that Maybelle had Down syndrome, she declined further testing. As a cancer patient, Alison faced a different kind of futurity, living through shocks and reprieves with every new battery of tests—each of which presented its own impossible mix of certainty and uncertainty, as in a prognosis of six to twelve months. Therefore, she understood the impact of prediction both as a parent and as a patient: MB, and my head. It seems likely that Alison’s later thoughts about the book’s direction were fueled by her life and that a scholarly monograph may have seemed insufficient to her embodied experience of the questions she considered.
* * *
In leaving us her manuscript and notes, Alison joins a group of important thinkers who left unfinished work for friends and colleagues to complete. At one point, Rachel collected a list that included such figures as the poet T. S. Eliot, author Ralph Ellison, and critics F. O. Matthiessen, Michel Foucault, Jacques Derrida, Edward Said, Raymond Williams, and Walter Benjamin. The company becomes more diverse with the inclusion of more recent authors like the poet Gary Fisher and cultural critics Chris Bell, Patricia Yaeger, Barbara Johnson, Lindon Barrett, Linda Singer, and William Hawkeswood.
We take a certain comfort in knowing that the challenges we face as editors have been shared by the editors and collaborators on these earlier projects. In Alison’s case, the inclusion of personal narrative presents us with special challenges: even as co-authors, we do not claim to speak for Alison; we hope that Alison speaks with our help. We are her assistive technology. In this role, we see a partial parallel with the work of parents who speak for their children—and the same ethical conundrums, the shadings of which are implied by prepositions: speaking for, speaking about, speaking over, speaking with. We have tried to speak with Alison or, rather, to let her speak through us—to preserve as much of her agency, her intentions, as we could. Paradoxically, to do so means alteration: collaborating with Alison requires a sort of editorial séance, a conjuring of the Alison we knew. Imagining her, to imagine whether she would approve of a particular change. Would she want this? Would she say this, and would she say this in this way?
In a short essay on writing, Eudora Welty describes the process of revision as driven by listening: she listens to an inner voice and trusts it to make her changes.8 As editors, we have taken the same approach, but the voice in our heads is Alison’s. Our work on this book is driven and shaped by our friendship with Alison; we have tried to listen to the voice on the page and to the voice we remember. The memory of that voice has been our surest editorial guide: Alison in conversation—her emphatic openness, her political fearlessness, her exuberant curiosity, her warmth and affection, her desire to connect and learn, to bear witness to life at its best and worst. (And, less obviously, to her privacy: Alison’s openness as a blogger and speaker belied how fiercely she guarded her own privacy and that of her family. We have honored the lacunae too.)
We first met to discuss our work on this project on a muggy day in New York City. There was so much to say in the time between the arrival of George’s train into the city and his return later that afternoon. We walked around Midtown, had lunch in a diner, walked some more, and drank some coffee as we tried to talk through what Alison had left us, what was missing, and what our process should be. At one point, we stopped to take a selfie. Neither of us looks great in the photo: the angle is unflattering, our hair is damp, and the sky behind us is a humid white. But afterward we confessed to each other that we felt Alison there with us, almost expecting that she might appear over our shoulders in the picture. In retrospect, our strong sense of Alison’s presence is less a spiritual intimation than it is a sign that the project we were starting would involve ongoing work of reviving, revisiting, and engaging with Alison’s desires, intentions, and beliefs. In choosing us to be her collaborators, she ensured that she would be present to us throughout the completion of this book.
Of course, our collaboration with Alison is different from working with a living co-author. Some of our constraints have been absolute. While Alison’s handwritten notes sometimes clearly signaled her intentions, at other times we couldn’t know for sure. She trusted us to carry the project forward, but trust is not license, so we’ve preferred a conservative approach. (This is probably the only time the word conservative has been publicly associated with Alison.) If we made structural changes, it was to bring like subjects together, rather than to formulate a new argument. If we made sentence edits, they were for clarity and concision, but we erred on the side of preserving Alison’s voice.
For this reason, we have favored finished work. Two chapters are built around published academic essays, and when assembling chapters from fragments, we have chosen the most polished pieces—nuggets, not raw ore. Wherever Alison appeared unsure of how to interpret or frame a certain chapter, or when her thinking was still developing, we have chosen what we thought was her best and most representative work. This approach was necessary in chapter 2, which is based on a long-running research project in which Alison conducted extensive interviews with
