Search

Prenatal genetic testing has changed the circumstances under which parents choose what pregnancies to carry to term. Some have predicted that as a result of parents'choices, people with Down syndrome will disappear from our communities in the near future. Chris Kaposy, a bioethicist who has a son with Down syndrome, reflects on parenting his son in the midst of this supposed disappearance.Writing from a pro-choice, disability-positive perspective, Kaposy presents some of the decades-old bioethical controversies involving children with Down syndrome, illustrating a prehistory of disappearance that has shaped current attitudes toward intellectual disability. Layered throughout this history are elements of Kaposy's personal experience with his son and family. Transcending monograph and memoir, The Beautiful Unwanted draws creatively upon the past and the present, upon myth, history, science, and personal stories, to present the world of families that include children with Down syndrome from a series of uncommon perspectives. This account encompasses the changeling myths of Newfoundland, the “discovery” of Down syndrome by John Langdon Down and Jérôme Lejeune, and the twentieth-century experience of institutionalization, as well as recent advances in reproductive technology.We must recognize that we have some control over the future, Kaposy argues, and we must ask what kind of future we want for those who have intellectual disabilities. The Beautiful Unwanted poses this question in a way that is engaging, often bewildering, and always fascinating.

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.

“In her tender and genuinely beautiful memoir, Kelle Hampton encourages us to not simply accept the unexpected circumstances of our lives, but to embrace them like the things we wished for all along.” —Matthew Logelin, New York Times bestselling author of Two Kisses for MaddyBloom is an inspiring and heartfelt memoir that celebrates the beauty found in the unexpected, the strength of a mother's love, and, ultimately, the amazing power of perspective. From the outside looking in, Kelle Hampton had the perfect life: a beautiful two-year-old daughter, a loving husband, a thriving photography career, and great friends. When she learned she was pregnant with her second child, she and her husband, Brett, were ecstatic. Her pregnancy went smoothly and the ultrasounds showed a beautiful, healthy, high-kicking baby girl.But when her new daughter was placed in her arms in the delivery room, Kelle knew instantly that something was wrong. Nella looked different than her two-year-old sister, Lainey, had at birth. As she watched friends and family celebrate with champagne toasts and endless photographs, a terrified Kelle was certain that Nella had Down syndrome—a fear her pediatrician soon confirmed. Yet gradually Kelle's fear and pain were vanquished by joy, as she embraced the realization that she had been chosen to experience an extraordinary and special gift.With lyrical prose and gorgeous full-color photography, Bloom takes readers on a wondrous journey through Nella's first year of life—a gripping, hilarious, and intensely poignant trip of transformation in which a mother learns that perfection comes in all different shapes. It is a story about embracing life and really living it, of being fearless and accepting difference, of going beyond constricting definitions of beauty, and of the awesome power of perspective. As Kelle writes,'There is us. Our Family. We will embrace this beauty and make something of it. We will hold our precious gift and know that we are lucky.'

A brutally honest yet beautiful journey of how one mother learned to bond with her disabled son and gained a new perspective on life.