Alison Piepmeier began work on what would be her last book years before she died of brain cancer at age 43 in 2016. It included writing inextricably informed by her career as a social scientist, relentless activist and a mother to Maybelle, her daughter who was born with Down syndrome.
What resulted was Unexpected: Parenting, Prenatal Testing and Down Syndrome, an interdisciplinary study of contemporary feminism and disability theory, subjects Piepmeier came to know personally. In Unexpected, Piepmeier pulls readers into her scholarship, as in her City Paper columns and classroom teaching, writing with her own raw edge about the fear, anger, excitement and anticipation about motherhood and Down syndrome diagnosis.
But as surgeries, treatments and tumor progression robbed Piepmeier of her beloved, rigorous research and writing routines, she knew she would not get to finish Unexpected herself. So, in the summer of 2016, she turned to George Estreich, who teaches writing at Oregon State University, to take over the project. He agreed.
A few weeks later, on Aug. 12, 2016, she died.
“I think it took me about 15 minutes before I realized the dimensions of the project and realized that this was not something I could do on my own,” Estreich told the City Paper. Rachel Adams, a Columbia University professor whose studies aligned with Piepmeier’s, signed on to help complete the book — “to my infinite relief,” Estreich said.
To complete Unexpected, Estreich and Adams reviewed everything Piepmeier published, from peer-reviewed articles to City Paper columns to personal writings on her blog. With their departed colleague’s scribbled-up manuscript and a firm grasp on her writing voice, they set off to fill in the blanks of Piepmeier’s four chapters of Unexpected. Then they each added their own.
In addition to being Piepmeier’s academic contemporaries, Estreich and Adams both also have children with Down syndrome. Estreich’s 2013 memoir, The Shape of the Eye, chronicles the early childhood of his daughter, Laura.
Describing the process, Estreich recalls a City Paper column in which Piepmeier researched kintsugi, a Japanese art tradition that could repair her beloved, shattered Princess Leia coffee mug, but which would leave its fracture lines laced with gold.
“Neither the cup nor I can be made as good as new, and I won’t pretend otherwise,” Piepmeier wrote on June 2, 2016.
“That’s our metaphor for what we were doing is we were assembling this,” Estreich said. “But, we were also leaving the seams showing You know, we were respecting the limits of what we had.”
The finished volume is not just a best-guess fabrication, though. It consists of what Piepmeier’s collaborators deemed her best work, pieced together. In Unexpected‘s preface, Estreich and Adams describe that assembly as “kintsugi of the future.”
Piepmeier’s chapters tackle tough questions that swirl around mainstream understanding of parenthood, reproduction and disability. She interviews mothers who, after a Down syndrome diagnosis, terminated their pregnancies or carried to term. She frames disability as “an embraceable form of diversity,” decrying stubborn cultural institutions which refuse that embrace. She talks about dancing with Maybelle.
“I don’t want to make her fit into existing systems — I want her to help challenge and change those systems,” Piepmeier wrote.
Adams’ chapter takes the form of a letter, the same way her friendship with Pipemeier began, in a series of pointed questions that examine how her former colleague’s work remains especially relevant now. Recalling Piepmeier’s willingness to change her mind when engaged on a topic, Adams ponders how Piepmeier would have grappled with gene-editing technologies like CRISPR, the intersection of #MeToo and disability, political fights over abortion and more.
“This letter is also for me,” Adams wrote. “Isn’t the purpose of letters to the dead really to sustain the living? In writing, I can extend the conversations that were central to our friendship and the commitments underlying your work.”
Estreich believes his old friend’s blog contained some of her best work because it was “accessible” — a writerly turn of phrase.
“It was accessible writing in the service of access,” he wrote. “To call for greater access is to question the unquestioned boundaries of a restrictive world, and for Alison, boundaries were generally things to ignore, step over, redraw, or tear down.”
Unexpected: Parenting, Prenatal Testing and Down Syndrome will be published Feb. 23, 2021 by NYU Press.
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