Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves

by George Estreich

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 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 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 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 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.

Genres: Disability, Science, Nonfiction

226 pages, Kindle Edition

Published February 22, 2019

Reviews

[Clare · Rating 5 out of 5]

In the early years of Russell's life it was Michael Bérubé's Life As We Know It that rocked my world, introducing the idea of people with disabilities as citizens rather than special angels. I've read numerous books on disability since then, some informative, some memoir, some better than others, all useful for helping me understand the world and how it might see Russell. This book was at once similar and completely different, telling me about things I didn't know I didn't know about, but with the same underlying concerns about whose lives we value and whose we don't. An excellent, captivating read.

[Manja W · Rating 5 out of 5]

Ein Buch, an dem ich sehr lange gelesen habe. Nicht, weil ich es nicht mochte oder es mich langweilte. Im Gegenteil, nach vielen Kapiteln brauchte ich Zeit, um über das geschriebene nachzudenken und auf mich wirken zu lassen. Der Autor spricht sehr viele schwerwiegende Themen an, ohne jemals oberflächlich zu werden und immer mit gut recherchierten und verstandenen Informationen. Das Buch ist mal wieder ein tolles Beispiel dafür, dass manche Themen nicht in Twitter-Stil betrachtet werden können, sondern mit vielen Worten beschrieben und betrachtet gehören. Hier liefert das Buch eine goßartige Leistung. Diskurs sollte viel öfter auf dieser Ebene geführt werden.

[Dougie Morgan · Rating 3 out of 5]

Should you so wish, you can now read my full review over at the British Society for Literature and Science!

https://www.bsls.ac.uk/2024/09/estrei...

[Susan · Rating 3 out of 5]

I heard the author speak on Science Friday and was really interested. Any intersection between science and disability sounds right up my alley, and when I started the book and he talked about how story and narrative matters, I thought I had found a home.

Instead, I found a book that was… disappointing to me. All the way through, I had a hard time putting my finger on what, exactly, did not work about it. For all of the myriad kinds of disabilities (visible and hidden) that exist, I am disappointed that the author almost exclusively focuses on trisomies and Downs Syndrome. For all that he speaks about including the voices of those with disabilities, he does not include many of theirs in this book. For all that it is a book about the importance of story and narrative, the book is largely dry and factual, and mostly felt devoid (or at least limited) in actual relational connection.

The author makes some good points (what stories are the genetics companies trying to tell? What stories are they trying to SELL? What stories are being left out? Whose stories are not being told?). But in the end, I had to convince myself to pick this book up every single time, and for a book that was a complete gimme in terms of my interests, that just doesn’t do it for me.

[Mills College Library]

660.6 E823 2019