A moving argument for a more focused, humane, and efficient system for conducting medical research.
The story of a painful but inspiring search for a cure for a fatal disease.
Dockser Marcus, a Pulitzer Prize–winning Wall Street Journal reporter, had finished a series on advances in cancer therapy when she endured the death of her mother to a rare cancer for which no treatment existed. The author’s research revealed that activists had often pressured the Food and Drug Administration to pay attention to diseases such as AIDS and allow community participants on hospital and government advisory committees. It was an effective approach, but the author found that the scientists called the shots. They were the experts who would design experiments and work at their own, careful pace. This lugubrious system has worked miracles, but it’s too slow if a loved one is sick. Dockser Marcus discovered others with the same experience who had organized to work with and even guide researchers. They called themselves “citizen scientists.” The author concentrates on the fight against the rare genetic defect Niemann-Pick disease type C, which affects only about 200 individuals in the U.S. and 500 globally. Often healthy at birth, affected children “progressively” lose the ability to walk, talk, and eat; most die by age 19. Dockser Marcus introduces us to the families, children, physicians, researchers, and FDA officials. Almost all are sympathetic. Rather than merely lobbying or raising money, parents have come together to search for treatments and suggest lines of research. Fiercely motivated, they have educated themselves, devouring medical journals so obsessively that some have written articles for these same journals. They have convinced researchers and government agencies to launch studies and then cooperated closely, not only volunteering their children, but also gathering far more data than the usual parent. The author ends her expert mixture of reportage and storytelling on a somewhat hopeful note. Promising treatments are in the pipeline, but there have been numerous bitter disappointments, and many affected children have suffered serious complications during trials.
A moving argument for a more focused, humane, and efficient system for conducting medical research.Pub Date: Feb. 14, 2023
ISBN: 9780399576133
Page Count: 256
Publisher: Riverhead
Review Posted Online: Jan. 20, 2023
Kirkus Reviews Issue: Feb. 15, 2023
BOOK REVIEW
BOOK REVIEW
This moving, potent testament might have been titled “Black Lives Matter.” Or: “An American Tragedy.”
The powerful story of a father’s past and a son’s future.
Atlantic senior writer Coates (The Beautiful Struggle: A Father, Two Sons, and an Unlikely Road to Manhood, 2008) offers this eloquent memoir as a letter to his teenage son, bearing witness to his own experiences and conveying passionate hopes for his son’s life. “I am wounded,” he writes. “I am marked by old codes, which shielded me in one world and then chained me in the next.” Coates grew up in the tough neighborhood of West Baltimore, beaten into obedience by his father. “I was a capable boy, intelligent and well-liked,” he remembers, “but powerfully afraid.” His life changed dramatically at Howard University, where his father taught and from which several siblings graduated. Howard, he writes, “had always been one of the most critical gathering posts for black people.” He calls it The Mecca, and its faculty and his fellow students expanded his horizons, helping him to understand “that the black world was its own thing, more than a photo-negative of the people who believe they are white.” Coates refers repeatedly to whites’ insistence on their exclusive racial identity; he realizes now “that nothing so essentialist as race” divides people, but rather “the actual injury done by people intent on naming us, intent on believing that what they have named matters more than anything we could ever actually do.” After he married, the author’s world widened again in New York, and later in Paris, where he finally felt extricated from white America’s exploitative, consumerist dreams. He came to understand that “race” does not fully explain “the breach between the world and me,” yet race exerts a crucial force, and young blacks like his son are vulnerable and endangered by “majoritarian bandits.” Coates desperately wants his son to be able to live “apart from fear—even apart from me.”
This moving, potent testament might have been titled “Black Lives Matter.” Or: “An American Tragedy.”Pub Date: July 8, 2015
ISBN: 978-0-8129-9354-7
Page Count: 176
Publisher: Spiegel & Grau
Review Posted Online: May 5, 2015
Kirkus Reviews Issue: July 1, 2015
BOOK REVIEW
BOOK REVIEW
SEEN & HEARD
BOOK TO SCREEN
BOOK TO SCREEN
A fierce, penetrating, and empowering call for change.
Artist and activist Vaid-Menon demonstrates how the normativity of the gender binary represses creativity and inflicts physical and emotional violence.
The author, whose parents emigrated from India, writes about how enforcement of the gender binary begins before birth and affects people in all stages of life, with people of color being especially vulnerable due to Western conceptions of gender as binary. Gender assignments create a narrative for how a person should behave, what they are allowed to like or wear, and how they express themself. Punishment of nonconformity leads to an inseparable link between gender and shame. Vaid-Menon challenges familiar arguments against gender nonconformity, breaking them down into four categories—dismissal, inconvenience, biology, and the slippery slope (fear of the consequences of acceptance). Headers in bold font create an accessible navigation experience from one analysis to the next. The prose maintains a conversational tone that feels as intimate and vulnerable as talking with a best friend. At the same time, the author's turns of phrase in moments of deep insight ring with precision and poetry. In one reflection, they write, “the most lethal part of the human body is not the fist; it is the eye. What people see and how people see it has everything to do with power.” While this short essay speaks honestly of pain and injustice, it concludes with encouragement and an invitation into a future that celebrates transformation.
A fierce, penetrating, and empowering call for change. (writing prompt) (Nonfiction. 14-adult)Pub Date: June 2, 2020
ISBN: 978-0-593-09465-5
Page Count: 64
Publisher: Penguin Workshop
Review Posted Online: March 14, 2020
Kirkus Reviews Issue: April 1, 2020
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