Defiant Birth

Women Who Resist Medical Eugenics

Melinda Tankard Reist

• Éditeur: Spinifex Press
• Année: 2006
• ISBN:
  9781742194158
• Édition: 1
• Sujet: Médecine
• Sous-sujet: Gynécologie, obstétrique et profession de sage-femme

Daring women—those who were told not to have their babies due to perceived disabilities in themselves or their unborn children—tell their stories in this controversial book that looks critically at medical eugenics as a contemporary form of social engineering. Believing that all life is valuable and that some are not more worthy of it than others, these women have given birth in the face of disapproval and hostility, defied both the creed of perfection and accepted medical wisdom, and given the issue of abortion a complexity beyond the simplistic pro-life/pro-choice dichotomy. As it questions the accuracy of screening procedures, the definition of a worthwhile life, and the responsiblity for determining the value of an imperfect life, this book trenchantly brings to light many issues that for years have been marginalized by the mainstream media and restricted to disability activism.

Index

abortion

commonly-accepted option, 290

for correctible conditions, 60

curbing access to, and implications, 292

and discriminatory cultural assumptions, 287

for dwarfism, 17, 58–9, 222

and genetic screening, 2, 7

grief after, 12, 21, 63

induction as euphemism for, 11

justified for potential ‘pain and suffering’, 33

lack of explanation before, 11–12

parents’ loss ignored by health system, 21

personal accounts of, 11–12

racial attitudes to, 65

recommended by doctors, 17, 56, 147, 148, 151, 164–5, 179, 214, 270, 227–8, 233

‘reproductive quarantine’ for parents, 44

for sex-selection, 33–4

survival of baby after, 65

and Turner’s syndrome, 59

see also late termination of pregnancy

abortion debate, 292

achondroplasia (dwarfism), 212–15, 219, 220–2

adoption of special needs children, 64

AIDS Clinical Trial Group (ACTG) 076, 155

Aldrich, Diana D., ‘All is right with my world’, 84–8

AFP test results, 87

amniocentesis, 87

negative responses to pregnancy, 85–6, 87, 88

pregnancy testing, 86

response of medical staff, 87–8

search for obstetrician, 86–7

Aldrich, Logan Alexandria, 88

Allen, Frances, on Turner’s syndrome, 59

Allen, Garland E., on eugenics movement, 192

alpha fetoprotein (AFP), 10–11, 13, 87, 187, 280–1, 282

American Eugenics Society, 36

amniocentesis

emotions of women undergoing, 19–20

and extension of lawful abortion period, 58, 71

risk of, 23–4

Anderson, Andrew, 130, 135, 136

funeral and eulogy, 141–2

impact on family members, 138

medical care for, 138

oesophageal defect indicated, 131–2

repair surgery, 136–7

support services, 137

Anderson, Gwen, on values and beliefs of couple, 15

Anderson, John, 132–3, 141–2

Anderson, Julia, ‘Finding joy in the weak among us’, 129–43

birth of Andrew, 135

Down syndrome diagnosed, 132

family life, 134

impact of Andrew’s illness and death, 139–43

pregnancy for Andrew, 130–2, 134

standard of medical care, 137

ultrasound examinations, 131, 132, 133

‘Wel...