“I felt less alone after researching and writing this book,” the author asserts, and the same will certainly be true for...

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PRADER-WILLI SYNDROME

HOW PARENTS AND PROFESSIONALS STRUGGLED AND COPED AND MADE GENETIC HISTORY

Hernandez-Storr’s debut deftly chronicles the advancement of scientific knowledge about Prader-Willi syndrome and its effects on families.

The author’s daughter was diagnosed with Prader-Willi syndrome at Cedars-Sinai Hospital in Los Angeles in 2002. Hernandez-Storr delves into the history of the condition and wonders whether it’s “a special hell for families.” Obesity and behavioral problems are two main challenges associated with PWS. Children with the condition are short, “floppy,” and notably overweight from age 2; boys also have underdeveloped testes. Most eventually have to be institutionalized. In this dynamic, journalistic account, Hernandez-Storr surveys the major events in the discovery of PWS, which was named after the two Zurich children’s hospital doctors, Andrea Prader and Heinrich Willi, who published a paper about it in 1956. Research eventually revealed either a microdeletion on chromosome 15 or two copies of chromosome 15 from the mother (an example of uniparental disomy) as the ultimate cause. The book handily alternates this layman’s history of the science of PWS with some case studies of families heavily involved in the Prader-Willi Syndrome Association. For instance, Shirley Neason, whose son Daniel had PWS and died at 14, was a founding member of PWSA and edited its newsletter, The Gathered View, from the mid-1970s. PWS patient Curtis Deterling’s progress gives an intimate view of the condition’s typical course. He struggled to follow directions at traditional schools and was later moved to various live-in facilities for people with developmental disabilities. The young man, however, was able to temporarily hold down a job and have a girlfriend. Although the book might seem to hold only niche appeal, the sense of genetic mystery is relevant to any disease’s evolution. In places, Hernandez-Storr gets too bogged down in PWSA conferences and leadership changes; better to avoid this more parochial material and maintain a focus on the universally applicable aspects of the syndrome—how it affects patients and families.

“I felt less alone after researching and writing this book,” the author asserts, and the same will certainly be true for readers affected by PWS.

Pub Date: N/A

ISBN: N/A

Page Count: -

Publisher: Dog Ear Publisher

Review Posted Online: Sept. 17, 2018

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Not an easy read but an essential one.

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HOW TO BE AN ANTIRACIST

Title notwithstanding, this latest from the National Book Award–winning author is no guidebook to getting woke.

In fact, the word “woke” appears nowhere within its pages. Rather, it is a combination memoir and extension of Atlantic columnist Kendi’s towering Stamped From the Beginning (2016) that leads readers through a taxonomy of racist thought to anti-racist action. Never wavering from the thesis introduced in his previous book, that “racism is a powerful collection of racist policies that lead to racial inequity and are substantiated by racist ideas,” the author posits a seemingly simple binary: “Antiracism is a powerful collection of antiracist policies that lead to racial equity and are substantiated by antiracist ideas.” The author, founding director of American University’s Antiracist Research and Policy Center, chronicles how he grew from a childhood steeped in black liberation Christianity to his doctoral studies, identifying and dispelling the layers of racist thought under which he had operated. “Internalized racism,” he writes, “is the real Black on Black Crime.” Kendi methodically examines racism through numerous lenses: power, biology, ethnicity, body, culture, and so forth, all the way to the intersectional constructs of gender racism and queer racism (the only section of the book that feels rushed). Each chapter examines one facet of racism, the authorial camera alternately zooming in on an episode from Kendi’s life that exemplifies it—e.g., as a teen, he wore light-colored contact lenses, wanting “to be Black but…not…to look Black”—and then panning to the history that informs it (the antebellum hierarchy that valued light skin over dark). The author then reframes those received ideas with inexorable logic: “Either racist policy or Black inferiority explains why White people are wealthier, healthier, and more powerful than Black people today.” If Kendi is justifiably hard on America, he’s just as hard on himself. When he began college, “anti-Black racist ideas covered my freshman eyes like my orange contacts.” This unsparing honesty helps readers, both white and people of color, navigate this difficult intellectual territory.

Not an easy read but an essential one.

Pub Date: Aug. 13, 2019

ISBN: 978-0-525-50928-8

Page Count: 320

Publisher: One World/Random House

Review Posted Online: April 28, 2019

Kirkus Reviews Issue: May 15, 2019

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A clear and candid contribution to an essential conversation.

SO YOU WANT TO TALK ABOUT RACE

Straight talk to blacks and whites about the realities of racism.

In her feisty debut book, Oluo, essayist, blogger, and editor at large at the Establishment magazine, writes from the perspective of a black, queer, middle-class, college-educated woman living in a “white supremacist country.” The daughter of a white single mother, brought up in largely white Seattle, she sees race as “one of the most defining forces” in her life. Throughout the book, Oluo responds to questions that she has often been asked, and others that she wishes were asked, about racism “in our workplace, our government, our homes, and ourselves.” “Is it really about race?” she is asked by whites who insist that class is a greater source of oppression. “Is police brutality really about race?” “What is cultural appropriation?” and “What is the model minority myth?” Her sharp, no-nonsense answers include talking points for both blacks and whites. She explains, for example, “when somebody asks you to ‘check your privilege’ they are asking you to pause and consider how the advantages you’ve had in life are contributing to your opinions and actions, and how the lack of disadvantages in certain areas is keeping you from fully understanding the struggles others are facing.” She unpacks the complicated term “intersectionality”: the idea that social justice must consider “a myriad of identities—our gender, class, race, sexuality, and so much more—that inform our experiences in life.” She asks whites to realize that when people of color talk about systemic racism, “they are opening up all of that pain and fear and anger to you” and are asking that they be heard. After devoting most of the book to talking, Oluo finishes with a chapter on action and its urgency. Action includes pressing for reform in schools, unions, and local governments; boycotting businesses that exploit people of color; contributing money to social justice organizations; and, most of all, voting for candidates who make “diversity, inclusion and racial justice a priority.”

A clear and candid contribution to an essential conversation.

Pub Date: Jan. 16, 2018

ISBN: 978-1-58005-677-9

Page Count: 256

Publisher: Seal Press

Review Posted Online: Oct. 9, 2017

Kirkus Reviews Issue: Nov. 1, 2017

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