Silver Medal, Health/Medicine/Nutrition category, 2015 Independent Publisher Book Awards2015 AAUP Public and Secondary School Library Selection
Putting the ethical tools of philosophy to work, Ellen K. Feder seeks to clarify how we should understand "the problem" of intersex. Adults often report that medical interventions they underwent as children to "correct" atypical sex anatomies caused them physical and psychological harm. Proposing a philosophical framework for the treatment of children with intersex conditions—one that acknowledges the intertwined identities of parents, children, and their doctors—Feder presents a persuasive moral argument for collective responsibility to these children and their families.
|An important book for bioethics as well as theories of gender and sexuality. A gripping narrative with clarity of purpose and ease with major philosophical approaches to ethics and sexuality.Linking the problems raised by treatment of the intersexed to problems that are endemic to the field of bioethics, Feder argues that, in seeing itself charged with the task of solving specific case problems, bioethics has abandoned its philosophical mission of examining the ways that these case problems are framed and neglected its philosophical obligation to critique the context within which bioethics is asked to operate. A controversial and radical conclusion, yes, but one that is skillfully defended.Just when you thought nothing more could be added to intersex scholarship, Ellen Feder, a compassionate philosopher, uses the tools of her discipline to expand our understanding. Drawing on chilling stories of the treatment of children with “Disorders of Sexual Differentiation,” she tackles questions like: What constitutes good medical care? Why are children’s needs subverted? What underlies the compelling appeal of normality and aversion to intersexuality?In Making Sense of Intersex, Ellen K. Feder expertly employs the tools of the medical humanities to examine the thoughts, desires, and growth potential of the parents and clinicians who care for children born intersex—with sex chromosomes, hormones, or body parts that don't quite match medical standards for males or females. Rather than the usual and often misguided emphasis on gender identity development and its attendant politics, Feder focuses instead on how parents love and how clinicians care. The result is a powerfully sympathetic and deeply moving call to a better way for all of us.Feder’s exploration of the ethics of intersex treatment is a cautionary tale for health care providers and families. Her analysis highlights serious deficiencies in the contemporary process of informed consent. As a physician, mother of adults with atypical sex, and moderator of a family support group, I strongly urge clinicians involved in the care of these children to read this book . Feder makes it clear that the prevailing model of decision-making for irreversible treatments such as surgery and hormonal therapy relies on the flawed premise that these treatments will prevent harm to children and families despite evidence that they actually cause harm. Assuming that information overload will paralyze anxious families, physicians fail to provide balanced education on long-term effects. In dismissing input from the ultimate experts, patients with lived experience of lasting physical and emotional trauma, clinicians neglect their primary moral obligation to vulnerable families. By the time parents learn of their child’s right to sexual integrity, physical change is irrevocable. It is too late to restore the original “outer self” integral to the core sense of being whole that lets a child engage with the world, love and be loved.
CommentsThere are currently no reviewsWrite a review on this title.
Table of Contents
Introduction. Disciplinary Limits: Philosophy, Bioethics, and the Medical Management of Atypical Sex
1. The Trouble with Intersex: History Lessons
2. "In Their Best Interests": Parents’ Experience of Atypical Sex Anatomy in Children
3. Tilting the Ethical Lens: Shame, Disgust, and the Body in Question
4. Reassigning Ambiguity: Parental Decisions and the Matter of Harm
5. A Question of Ethics as/or a Question of Culture: The Problem of What Is and What Ought to Be
6. Neutralizing Morality: Nondirective Counseling of Parents of Children with Intersex Conditions, 2006-
7. Practicing Virtue: A Parental Duty
8. Protecting Vulnerability: An Imperative of Care
Conclusion. Lessons from Physicians