Fables and Futures
Biotechnology, Disability, and the Stories We Tell Ourselves
240 pp., 6 x 9 in,
- Published: March 19, 2019
- Publisher: The MIT Press
- Published: February 22, 2019
- Publisher: The MIT Press
How new biomedical technologies—from prenatal testing to gene-editing techniques—require us to imagine who counts as human and what it means to belong.
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 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; author of The End of Sex and the Future of Human Reproduction
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, Professor of English and Bioethics at Emory University; author of Extraordinary Bodies and Staring: How We Look
Fables and Futures is a well-researched, original, and engaging book. 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 W. Trent, Heller School, Brandeis University
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, Assistant Professor, University of Iowa's Nonfiction Writing Program; author of Among the Living and the Dead
In Fables and Futures, Estreich goes beyond the personal to describe the ways that genetic technologies affect society and the stories the promoters of such technologies tell about them. These 'fables' affect not only how we view new technologies but also how we view normality and the rights and welfare of humans whom we have labeled as having various 'disabilities.' … I recommend Fables and Futures to anyone who wants to seriously engage in the human genome editing debate at the society and species levels.
This is a beautifully-written book which enables the reader to enter the author's world and view both the disability and genetic engineers' goal to eliminate it, with different eyes. Everyone who cares about making our society more compassionate should read it.
The New Bioethics
Rarely has any writer so elegantly transposed conversations squarely rooted in science and academia over the subjects of biotechnology and genome editing, and ground them in a moving conversation that considers the human aspect of our rapidly advancing world.
The Corvallis Advocate