For years, Adams (English and American Studies/Columbia Univ.; Sideshow U.S.A.: Freaks and the American Cultural Imagination, 2001) focused her attention on disability studies. Her self-described “obsession” with outsiders sensationalized due to their physical deformities turned personal when her second son, Henry, was born with Down syndrome.
The author’s clear, precise memoir offers an account of her feelings, which run the gamut from shocked dismay to unequivocal acceptance, and the process by which she and her husband arrived at a place of profound love and gratitude for Henry and his differences. Relying on a support network of friends and, for Henry, occupational, speech and feeding therapists, special educators and evaluators, Adams frequently doubted whether anything she was doing would make a difference during his first years. A literary critic, she charts her course personally and professionally, as a new mother to a disabled child and as a scholar of disability studies, examining how these two roles intersect and complement one another. She cites innumerable books and studies and explores views on prenatal genetic testing. In describing the “paradox of disability,” she writes, “If we live long enough, it will happen to all of us. And yet when it happens it always comes as a surprise.” While Adams admits that nothing could have fully prepared her to be a parent of a disabled child—including her expertise in the field—this work reflects her thoughtful balance of cerebral and nurturing instincts. “I like to think that someday Henry will read every word of this book,” she writes, “taking pleasure in seeing our entwined stories recorded in print.”
An illuminating narrative on how the experience of mothering a special needs child requires intellectual work as well as emotional growth.