PostedAugust 16, 2021 · 1 minute read
This week, genetic technologies, parenting and high-risk children.
Hey, Check This Out! is a weekly list of content curated with the rare disease community in mind. Have a link to share? We’d love to see it. Contact us on Twitter, Instagram or Facebook and let us know what you’re reading, listening to and watching.
A thoughtful, thoroughly researched and reported book on how genetic technology is changing modern parenting. Bonnie Rochman writes with sensitivity and detail, tackling a number of complicated subjects. Pulitzer Prize–winning author Siddhartha Mukherjee called it “an exciting, informative and lucidly written book about genes and the future.”
A reported piece on what it feels like to stare down another year of high-stakes isolation. “There literally are not words for the frustration but also the fury that I feel that this has gone on as long as it has,” the mother of a high-risk child told the New York Times. “It didn’t have to be this way. It didn’t.”
In Pulitzer Prize–finalist Chloé Cooper Jones’s new memoir (out April 2022), the journalist and philosophy professor considers her life as a woman with a visible congenital disability. Cooper Jones is an exacting, sharp writer whose relationship to language is exhilarating to witness. Pre-orders are available here, and in the meantime, check out her 2018 essay about parenting, disabilities and what 6-year-olds notice.