Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality

Contents

contents List of Contributors ix Acknowledgments xi Introduction: Thinking about Surgically Shaping Children xiii erik parens part i personal narratives about appearancenormali ing surgery 1 Twisted Lies: My Journey in an Imperfect Body 3 sherri g. morris 2 Do I Make You Uncomfortable? Reflections on Using Surgery to Reduce the Distress of Others 13 cassandra aspinall 3 My Shoe Size Stayed the Same: Maintaining a Positive Sense of Identity with Achondroplasia and Limb-Lengthening Surgeries 29 emily sullivan sanford 4 The Seduction of the Surgical Fix 43 lisa abelow hedley part ii technology and the pursuit of normality 5 Concepts of Technology and Their Role in Moral Reflection 51 james c. edwards 6 Emily’s Scars: Surgical Shapings, Technoluxe, and Bioethics 68 arthur w. frank 7 Thoughts on the Desire for Normality 90 eva feder kittay part iii the surgical context 8 To Cut or Not to Cut? A Surgeon’s Perspective on Surgically Shaping Children 113 jeffrey l. marsh 9 What’s Special about the Surgical Context? 125 wendy e. mouradian 10 Are We Helping Children? Outcome Assessments in Craniofacial Care 141 wendy e. mouradian, todd c. edwards, tari d. topolski, nichola rumsey, and donald l. patrick part iv children and parents deciding about appearance-normaliing surgery 11 Who Should Decide and How? 157 priscilla alderson 12 The Power of Parents and the Agency of Children 176 hilde lindemann 13 “In Their Best Interests”: Parents’ Experience of Atypical Genitalia 189 ellen k. feder 14 Toward Truly Informed Decisions about Appearance-Normalizing Surgeries 211 paul steven miller 15 Appearance-Altering Surgery, Children’s Sense of Self, and Parental Love 227 adrienne asch 16 What to Expect when You Have the Child You Weren’t Expecting 253 alice domurat dreger Index 267 viii Contents ...