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Surgically Shaping Children
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summary
At a time when medical technologies make it ever easier to enhance our minds and bodies, a debate has arisen about whether such efforts promote a process of "normalization," which makes it ever harder to tolerate the natural anatomical differences among us. The debate becomes especially complicated when it addresses the surgical alteration, or "shaping," of children. This volume explores the ethical and social issues raised by the recent proliferation of surgeries designed to make children born with physical differences look more normal. Using three cases—surgeries to eliminate craniofacial abnormalities such as cleft lip and palate, surgeries to correct ambiguous genitalia, and surgeries to lengthen the limbs of children born with dwarfism—the contributors consider the tensions parents experience when making such life-altering decisions on behalf of or with their children. The essays in this volume offer in-depth examinations of the significance and limits of surgical alteration through personal narratives, theoretical reflections, and concrete suggestions about how to improve the decision-making process. Written from the perspectives of affected children and their parents, health care providers, and leading scholars in philosophy, sociology, history, law, and medicine, this collection provides an integrated and comprehensive foundation from which to consider a complex and controversial issue. It takes the reader on a journey from reflections on the particulars of current medical practices to reflections on one of the deepest and most complex of human desires: the desire for normality. Contributors Priscilla Alderson, Adrienne Asch, Cassandra Aspinall, Alice Domurat Dreger, James C. Edwards, Todd C. Edwards, Ellen K. Feder, Arthur W. Frank, Lisa Abelow Hedley, Eva Fedder Kittay, Hilde Lindemann, Jeffery L. Marsh, Paul Steven Miller, Sherri G. Morris, Wendy E. Mouradian, Donald L. Patrick, Nichola Rumsey, Emily Sullivan Sanford, Tari D. Topolski

Table of Contents

  1. Cover
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  1. Frontmatter
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  1. Contents
  2. pp. vii-viii
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  1. List of Contributors
  2. pp. ix-x
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  1. Acknowledgments
  2. pp. xi-xii
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  1. Introduction: Thinking about Surgically Shaping Children
  2. pp. xiii-xxx
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  1. PART I: PERSONAL NARRATIVES ABOUT APPEARANCE-NORMALIZING SURGERY
  2. p. 1
  1. 1. Twisted Lies: My Journey in an Imperfect Body
  2. pp. 3-12
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  1. 2. Do I Make You Uncomfortable? Reflections on Using Surgery to Reduce the Distress of Others
  2. pp. 13-28
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  1. 3. My Shoe Size Stayed the Same: Maintaining a Positive Sense of Identity with Achondroplasia and Limb-Lengthening Surgeries
  2. pp. 29-42
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  1. 4. The Seduction of the Surgical Fix
  2. pp. 43-48
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  1. PART II: TECHNOLOGY AND THE PURSUIT OF NORMALITY
  2. p. 49
  1. 5. Concepts of Technology and Their Role in Moral Reflection
  2. pp. 51-67
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  1. 6. Emily’s Scars: Surgical Shapings, Technoluxe, and Bioethics
  2. pp. 68-89
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  1. 7. Thoughts on the Desire for Normality
  2. pp. 90-110
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  1. PART III: THE SURGICAL CONTEXT
  2. p. 111
  1. 8. To Cut or Not to Cut? A Surgeon’s Perspective on Surgically Shaping Children
  2. pp. 113-124
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  1. 9. What’s Special about the Surgical Context?
  2. pp. 125-140
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  1. 10. Are We Helping Children? Outcome Assessments in Craniofacial Care
  2. pp. 141-154
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  1. PART IV: CHILDREN AND PARENTS DECIDING ABOUT APPEARANCE-NORMALIZING SURGERY
  2. p. 155
  1. 11. Who Should Decide and How?
  2. pp. 157-175
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  1. 12. The Power of Parents and the Agency of Children
  2. pp. 176-188
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  1. 13. “In Their Best Interests”: Parents’ Experience of Atypical Genitalia
  2. pp. 189-210
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  1. 14. Toward Truly Informed Decisions about Appearance-Normalizing Surgeries
  2. pp. 211-226
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  1. 15. Appearance-Altering Surgery, Children’s Sense of Self, and Parental Love
  2. pp. 227-252
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  1. 16. What to Expect when You Have the Child You Weren’t Expecting
  2. pp. 253-266
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  1. Index
  2. pp. 267-274
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