From next-generation prenatal tests, to virtual children, to the genome-editing tool CRISPR-Cas9, new biotechnologies grant us unprecedented power to predict and shape future people. That power implies a question about belonging: which people, which variations, will we welcome? How will we square new biotech advances with the real but fragile gains for people with disabilities—especially when their voices are all but absent from the conversation?
This book explores that conversation, the troubled territory where biotechnology and disability meet. In it, George Estreich—an award-winning poet and memoirist, and the father of a young woman with Down syndrome—delves into popular representations of cutting-edge biotech: websites advertising next-generation prenatal tests, feature articles on “three-parent IVF,” a scientist's memoir of constructing a semisynthetic cell, and more. As Estreich shows, each new application of biotechnology is accompanied by a persuasive story, one that minimizes downsides and promises enormous benefits. In this story, people with disabilities are both invisible and essential: a key promise of new technologies is that disability will be repaired or prevented.
In chapters that blend personal narrative and scholarship, Estreich restores disability to our narratives of technology. He also considers broader themes: the place of people with disabilities in a world built for the able; the echoes of eugenic history in the genomic present; and the equation of intellect and human value. Examining the stories we tell ourselves, the fables already creating our futures, Estreich argues that, given biotech that can select and shape who we are, we need to imagine, as broadly as possible, what it means to belong.
"A profound and moving exploration of our perceptions surrounding difference and ability. With the kind of reverence for the power and potential of language that only a poet can possess, Estreich expertly builds a case for a future that’s already here -- one that can give voice to multiple ways of being."
--Inara Verzemnieks, author of Among the Living and the Dead: A Tale of Exile and Homecoming on the War Roads of Europe
"Fables and Futures is very much a writer’s book . . . Estreich is a rather craftier writer than I am (he’s a poet, I’m strictly nonfiction), and he will take you on journeys you might at first consider tangents from the main point, into comedians’ jokes about intellectual disability or a savvy reading of the 2012 film The Amazing Spider-Man. But precisely because he is so crafty a writer, he is an exacting reader—not only of the subtly manipulative and intellectually corner-cutting promotional materials for noninvasive prenatal screening, but also of the relentless and stunningly imprecise way in which scientists, medical professionals, and public officials equate disability with disease."
--Michael Bérubé, author of Life as Jamie Knows It: An Exceptional Child Grows Up and The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual Disability Transforms the Way We Read. Review in American Scientist.
"The book is a sort of intellectual travelogue, the author thinking his way across a landscape that is changing faster than it can be captured in concepts . . . Estreich is uncommonly adept at presenting both experiences and ideas in layers, without the structure itself becoming either unmanageable or distracting. Anyone who reads it should expect the wheels in their head to keep spinning for a while afterward."
--Scott McLemee, Essayist at Large, Inside Higher Ed. Review at Inside Higher Ed.
"Focusing on how stories persuade us about what is best for us and our families, George Estreich presents an essential complement to the many current authoritative treatises on health, genetics, disability, disease, and treatment that we turn to as we navigate the increasingly complex world of medical decision making and biotechnology application in our own lives. We all need the deep wisdom Fables and Futures offers as a guidepost on how to live with what medical science gives us as truths and choices in today’s world."
--Rosemarie Garland-Thomson, author of Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature
"Fables and Futures is a well-researched, original, and engaging study. Estreich explores new biotechnologies by considering the person rather the condition. He weaves together claims of science with popular culture, personal experiences, and history. Beautifully written, the book calls for a conversation about the promises and perils of the new biotechnologies."
--James Trent, author of Inventing the Feeble Mind: A History of Intellectual Disability in the United States
"A poet, with a daughter with Down syndrome, reflects movingly on the ways the words, images, and stories of genetics embody a persuasive narrative. Illuminating."
-- Henry T. Greely, Deane F. and Kate Edelman Johnson Professor of Law, Stanford University, the author of The End of Sex and the Future of Human Reproduction.
"I recommend Fables and Futures to anyone who wants to seriously engage in the human genome editing debate at the society and species levels. But I also recommend Estreich’s earlier book, The Shape of the Eye, lest in our abstraction of the human species, we forget what life itself is all about."
--George Annas, director of the Center for Health Law, Ethics, and Human Rights at Boston University's School of Public Health, and the author of Genomic Messages. Review in Science.
"Estreich is a master of metaphor and much of the book’s insight and originality
spring from his ability to spot and analyse the metaphors scientists use, not just to
present but to persuade . . . This is a beautifully-written book."
--Trevor Stammers, Centre for Bioethics and Emerging Technologies. Review in The New Bioethics.
I recommend this book highly and not only understand its value as a text that could be taught, but as a book that fills an important niche for what I believe disability studies and bioethics should be teaching students . . . I recommend it for a wide variety of bioethics and disability studies classrooms, as well as a text to engage scientists, engineers, and a broader public in conversation about the impact of how we talk and think about biotechnology - and how we talk and think about the lives that will be most powerfully influenced by new technologies.
--Ashley Shew, author of Animal Constructions and Technological Knowledge. Review in Disability Studies Quarterly.
Fables and Futures is a compelling reflection about the rise of biotechnological
innovations, from non-invasive prenatal testing to CRISPR-Cas9 based genetic engineering.
--Michelle Charett, York University. Review in Catalyst: Feminism, Theory, Technoscience.