Raising Henry

Rachel Adams’s life had always gone according to plan. She had an adoring husband, a beautiful two-year-old son, a sunny Manhattan apartment, and a position as a tenured professor at Columbia University. Everything changed with the birth of her second child, Henry. Just minutes after he was born, doctors told her that Henry had Down syndrome, and she knew that her life would never be the same. In this honest, self-critical, and surprisingly funny book, Adams chronicles the first three years of Henry’s life and her own transformative experience of unexpectedly becoming the mother of a disabled child. A highly personal story of one family’s encounter with disability, Raising Henry is also an insightful exploration of today’s knotty terrain of social prejudice, disability policy, genetics, prenatal testing, medical training, and inclusive education. Adams untangles the contradictions of living in a society that is more enlightened and supportive of people with disabilities than ever before, yet is racing to perfect prenatal tests to prevent children like Henry from being born. Her book is gripping, beautifully written, and nearly impossible to put down. Once read, her family’s story is impossible to forget.

Rachel Adams is Professor of English and American Studies at Columbia University, where she has been teaching since 1997. Her areas of specialization include nineteenth and twentieth century literatures of the United States and the Americas, gender studies, and disability studies. She is the author of two critically acclaimed books, the editor of two books, and she has published numerous articles in leading academic journals. Her first book, Sideshow USA (University of Chicago Press, 2001) was a starred selection in Publisher’s Weekly and was the subject of an enthusiastic full-page essay by Margo Jefferson in the New York Times Sunday Book Review. Her journalism has appeared in The Chronicle of Higher Education, The Los Angeles Review of Books, The Times of London Higher Education Supplement, and Gastronomica. From 2011 until 2015 she will hold the position of Director of the Future of Disability Studies Project at Columbia.

“This is a terrific book—gorgeously written, beautifully realized.”—Michael Bérubé, author of Life as We Know It: A Father, a Family, and an Exceptional Child


“…this book is a composite of the challenges and enjoyments of the first few years of a child with special needs and the family.…very useful for parents, family members, but also professionals including physicians, nurses, therapists, and genetic counselors.”—Fran Hickey, M.D., Director of the Sie Center for Down Syndrome, Colorado Children’s Hospital


“Adams succeeds in the difficult task of rendering intensely personal material in a way that makes any reader reflect on larger cultural questions…This book should be mandatory reading for all medical students, especially those entering the fields of obstetrics and gynecology.”—Georgina Kleege, author of Sight Unseen and Blind Rage: Letters to Helen Keller


"Rachel Adams’ Raising Henry: A Memoir of Motherhood, Disability, and Discovery is a must-read, moving, thought-provoking, important. I highly recommend."—Jon Colman, President, National Down Syndrome Society


"Raising Henry is not just a forthright and poetic family chronicle; it is a provocative exploration of Down syndrome, disability, and what it means to be human. Adams is feisty, compassionate, and brilliant."—Penny Wolfson, author of Moonrise: One Family, Genetic Identity and Muscular Dystrophy


"With extraordinary eloquence and breathtaking honesty, Rachel Adams has allowed us to share every intimate moment of the profound journey of parenting her son Henry. I found myself savoring every beautifully chosen word. This is a remarkable memoir!"—Emily Perl Kingsley, author of "Welcome to Holland" and Writer, Sesame Street


"Characterized by a poignant honesty and great integrity, probing intelligence and nuanced thinking, this is a wise, admirable, illuminating book."—Priscilla Gilman, author of The Anti-Romantic Child: A Story of Unexpected Joy