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A MATTER OF DIGNITY

CHANGING THE WORLD OF THE DISABLED

No pity or paternalism here, just the interesting confluence of technology and activism.

Edifying portraits of activists, therapists, technicians, and others working to help the disabled participate more fully in mainstream American life.

Potok, a painter and writer who chronicled the early stages of his blindness due to retinitis pigmentosa in Ordinary Daylight (not reviewed), thinks of disability “politically, as another form of ethnicity.” With that concept in mind, he set about interviewing people (disabled or not) who devote themselves to the transformation of technology and public policy in ways that benefit the disabled. Potok's narrative begins in Morristown, New Jersey, with Pete Lang, a guide-dog trainer at the Seeing Eye, the oldest and largest such school in the country. For the author, “training with the first dog was a giant move, not only in shrugging off my natural fears about putting my life in the hands of a dog, but in being unequivocally identified from then on as a blind man.” While the text mildly emphasizes technology benefiting the blind (including a profile of Ted Hunter, developer of a computer program that translates text, icons, and graphics into speech), it also highlights prostheses makers, a bioethics professor, social policy activists, and a music therapist: Connie Tomaino of New York City’s Beth Abraham Hospital, one of a handful of researchers exploring the neurological links between music and memory. They have found, the author tells us, that Parkinson's patients unable to walk unassisted are sometimes able to walk to the beat of a metronome, and that stroke victims who have lost the ability to speak may still be able to sing (an activity controlled by a different part of the brain) and in this roundabout way rebuild the ability to talk. With all of the gains that have been made by and for the disabled, Potok is quick to point out, they still suffer formidable shortfalls in income, employment, and education opportunities.

No pity or paternalism here, just the interesting confluence of technology and activism.

Pub Date: Feb. 4, 2002

ISBN: 0-553-80215-1

Page Count: 320

Publisher: Bantam

Review Posted Online: May 19, 2010

Kirkus Reviews Issue: Dec. 1, 2001

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BETWEEN THE WORLD AND ME

NOTES ON THE FIRST 150 YEARS IN AMERICA

This moving, potent testament might have been titled “Black Lives Matter.” Or: “An American Tragedy.”

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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

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WHEN BREATH BECOMES AIR

A moving meditation on mortality by a gifted writer whose dual perspectives of physician and patient provide a singular...

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A neurosurgeon with a passion for literature tragically finds his perfect subject after his diagnosis of terminal lung cancer.

Writing isn’t brain surgery, but it’s rare when someone adept at the latter is also so accomplished at the former. Searching for meaning and purpose in his life, Kalanithi pursued a doctorate in literature and had felt certain that he wouldn’t enter the field of medicine, in which his father and other members of his family excelled. “But I couldn’t let go of the question,” he writes, after realizing that his goals “didn’t quite fit in an English department.” “Where did biology, morality, literature and philosophy intersect?” So he decided to set aside his doctoral dissertation and belatedly prepare for medical school, which “would allow me a chance to find answers that are not in books, to find a different sort of sublime, to forge relationships with the suffering, and to keep following the question of what makes human life meaningful, even in the face of death and decay.” The author’s empathy undoubtedly made him an exceptional doctor, and the precision of his prose—as well as the moral purpose underscoring it—suggests that he could have written a good book on any subject he chose. Part of what makes this book so essential is the fact that it was written under a death sentence following the diagnosis that upended his life, just as he was preparing to end his residency and attract offers at the top of his profession. Kalanithi learned he might have 10 years to live or perhaps five. Should he return to neurosurgery (he could and did), or should he write (he also did)? Should he and his wife have a baby? They did, eight months before he died, which was less than two years after the original diagnosis. “The fact of death is unsettling,” he understates. “Yet there is no other way to live.”

A moving meditation on mortality by a gifted writer whose dual perspectives of physician and patient provide a singular clarity.

Pub Date: Jan. 19, 2016

ISBN: 978-0-8129-8840-6

Page Count: 248

Publisher: Random House

Review Posted Online: Sept. 29, 2015

Kirkus Reviews Issue: Oct. 15, 2015

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