The Beautiful Unwanted: Down Syndrome in Myth, Memoir, and Bioethics

Prenatal genetic testing has changed the circumstances under which parents choose what pregnancies to carry to term, leading to predictions that people with Down syndrome will disappear from our communities. Chris Kaposy, a bioethicist with a son with Down syndrome, reflects on parenting his son in the midst of this supposed disappearance. The Beautiful Unwanted is a book that presents the world of families that include children with Down syndrome from a series of uncommon perspectives, drawing creatively upon the past and the present to ask what kind of future we want for those who have intellectual disabilities.

Format: Hardback
Length: 208 pages
Publication date: 30 November 2023
Publisher: McGill-Queen's University Press

Prenatal genetic testing has revolutionized the decision-making process for parents regarding which pregnancies to carry to term. While some have speculated that the prevalence of individuals with Down syndrome may decline in the near future due to these choices, bioethicist Chris Kaposy, who has a son with Down syndrome, reflects on his parenting journey in the face of this potential disappearance. Kaposy, writing from a pro-choice and disability-positive perspective, delves into the longstanding bioethical controversies surrounding children with Down syndrome, highlighting a historical backdrop of their marginalization. Throughout this narrative, Kaposy intertwines his personal experiences with his son and family, creating a multifaceted portrayal of families with Down syndrome. Transcending the boundaries of monograph and memoir, The Beautiful Unwanted employs a rich tapestry of historical and contemporary elements, including myth, history, science, and personal stories, to present a unique perspective on the world of these families. This account encompasses a range of topics, including the changeling myths of Newfoundland, the discovery of Down syndrome by John Langdon Down and Jérôme Lejeune, and the twentieth-century experience of institutionalization. Moreover, it explores recent advancements in reproductive technology. Kaposy emphasizes the importance of recognizing our agency in shaping the future and urges us to contemplate the kind of future we desire for individuals with intellectual disabilities. The Beautiful Unwanted poses this critical question in an engaging, often bewildering, and always fascinating manner.

Dimension: 229 x 152 (mm)
ISBN-13: 9780228019008