them to term. In our view, the best treatment of this material was Alison’s article “The Inadequacy of ‘Choice’: Disability, Feminism, and Reproduction,” originally published in Feminist Studies. This article forms the basis of chapter 2. (We have also drawn on the transcript of a talk Alison gave at Columbia University on January 27, 2014, at a panel titled “Parenting, Narrative, and Our Genetic Futures.”) Though many more interview transcripts remain, the development and exploration of this raw material without Alison, who conceived of the project and conducted the interviews, would have been beyond our mandate.
Because Alison thought about the same subjects in many places and many arenas, it wasn’t uncommon for her to write about a topic such as prenatal diagnosis in blog posts, published articles, and interviews, as well as in handwritten notes. Where a passage clearly fit with an existing draft, we spliced it in. At the same time, we have made the invisible repairs customarily made by editors, streamlining sentences, line editing for clarity: where a sentence might be tightened without losing Alison’s voice, we did so. (George left in a few more adverbs than he otherwise might have, especially ones like incredibly, which expressed Alison’s verve and exuberance in life. She was incredibly excited to read things, to talk about them with her friends, to speak up about what she believed in. For Rachel, it was about preserving Alison’s optimism against her own tendency to see contradictions that complicate and undermine).
Early on, our friend Jordana Mendelson came up with the perfect metaphor for our process: the Japanese art of kintsugi, in which a broken vessel is fitted together, made whole again, using adhesive laced with gold. Kintsugi is a paradoxical art: by highlighting the jagged seams of the break, the technique holds wholeness and brokenness in a single artifact. In the same way, our own procedures, from this introduction to our individually authored chapters, footnotes, and occasional explanations in italics, are intended not to conceal but to call attention to the act of assembly.
Jordana’s insight began with a story Alison had told on her blog, about a favorite coffee mug. The front of the mug bore a cartoon of Princess Leia, holding a blaster and looking badass. Among her many enthusiasms, Alison was a Star Wars fan, and Princess Leia had special significance for her. (From May 2015: “She was a great example of a tough-talking, competent leader who just happened to be a woman. . . . In both my professional and personal life, I aspire to be more like her.”9) But in an essay published in the Charleston City Paper on June 2, 2016, Alison writes that the cup had fallen and broken:
She was gone, broken into five pieces. Drenched with hot coffee, I started to clean the floor. Several kitchen towels were required. And as I cleaned, I started crying. And I cried. I cried so much that I couldn’t breathe. I couldn’t stop.
After several minutes, I finally knelt on the floor and softly, carefully, touched Princess Leia’s face. Her face is fierce. She holds a blaster, facing to the right but looking to the left, as if she has just noticed someone. On the other side of the cup, it reads “Don’t even think about touching my coffee, you stuck-up, half-witted, scruffy-looking nerf-herder!” The nerf-herder quote is from The Empire Strikes Back rather than the original Star Wars, but that doesn’t matter. There Princess Leia was, in my hands, broken but defiant.10
Alison explains that her brother has researched kintsugi online and that he and her husband would like to repair the cup. She then meditates on what a repair might mean, reflecting on irreversibility, illness, the body, and care:
I know they would spend far more than it was ever worth to have it put back together, to try and return Princess Leia to that moment before the cup shattered on the kitchen floor.
The point, though, isn’t for the coffee cup to be fixed, with its injuries rendered invisible. The point now is to recognize the beauty of the effort to mend what is broken, however imperfectly, however incompletely.
The old Princess Leia is gone, after 12 years and thousands of cups of coffee. My old body is gone as well, the result of age and illness. Neither the cup nor I can be made as good as new, and I won’t pretend otherwise.
There is value, though, in the effort—the expensive, difficult striving—to put together what has been broken. To honor what was lost, but also what has been gained. In even the failed repair, to see compassion in the work of both potter and physician.
A few weeks after Alison’s column, her repaired Princess Leia cup came back to her: art restorers had set aside the priceless museum artifacts they had been working on to do a rush kintsugi restoration of Alison’s mass-produced Star Wars coffee cup. On June 26, Alison announced the completed repair on her blog:
So many things have been challenging, as you all know.
Okay, the bad news is still the bad news. If you have read this blog, you know my diagnosis.
Today, though, I want to celebrate something wonderful. The Princess Leia coffee cup has been remade.11
Alison includes photographs, front and back, of the mended cup. Brian offers a postscript, thanking the craftspeople who did the repair. In retrospect, looking at that blog post, we notice its brevity, the changed proportion of photographs to text, and the postscript from Brian. All were indicators of the progress of Alison’s disease, of the exhaustion it brought and her increasing reliance on others to help her express herself.
We cannot think of a better metaphor for our work on this project than Jordana’s connection with the art of kintsugi. We are not creating a new product of our own; nor are we attempting to erase the seams between fragments. At the same time, we hope to do justice to the shape and purpose of the original design. Of course, every metaphor has its limits. While the term kintsugi is apt for the process of piecing this manuscript together, it also suggests a restored whole; the chapters here, by contrast, are present in this form for the first time. This book is a kintsugi of the future, an attempt to piece together what Alison did not have time to complete. It is also a synecdoche for loss, because our assembly only suggests what Alison might have achieved, had she had more time.
* * *
In her last weeks, Alison increasingly relied on others to speak. Emails came from family and friends. Sometimes they arrived dictated and jointly signed, like one from her mother, Kelly Piepmeier: Alison (via Kelly). We find the joint signature meaningful. It invokes care, motherhood, scholarly precision. It suggests that even in the worst things we face, the best of us is revealed; we draw on our histories together and our connections, and our mutual dependence comes to the fore. Another email, answering a query about the project, was sent by Alison’s dear and longtime friend Catherine Bush:
George,
This is Catherine again. Alison says, great!
And of course Alison also says . . .
love,
Alison
* * *
Early in 2013, Rachel sent both George and Alison an email:
Here’s my brainstorm idea: we do a three-way dialogue (for somewhere like DSQ [Disability Studies Quarterly]), framed as both a conversation about parenting, writing, and advocacy AND as a formal experiment in disability-inspired writing. Where the traditional essay is one author, one argument developed, we are experimenting with co-authorship and interdependent thought/writing. What do you think?
We did present a panel that year at the American Studies Association, but we did not have time to complete the writing project Rachel had suggested or the others we had hoped to do. In a way, this book has absorbed the impulse. It’s a continuation of our conversations, and as such, it suggests
