Word: ashley
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Dates: during 2000-2009
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...treatment went further: doctors removed Ashley's uterus--to prevent potential discomfort from menstrual cramps and pregnancy in the event of rape--and her breast buds because of a family history of cancer and fibrocystic disease. "Ashley has no need for developed breasts since she will not breast feed," her parents argue, "and their presence would only be a source of discomfort to her" since the harness straps that hold her upright go across her chest...
...Keeping Ashley smaller, the doctors argue, has medical as well as emotional benefits: making it easier for her to be moved around means better circulation, digestion and muscle condition and fewer sores and infections. Her parents could continue to lift and bathe and dress her without assistance. "If you're going to be against this," Gunther says, "you have to argue why the benefits are not worth pursuing." Looking back on the committee debate now, both doctors admit there was an instinctive, emotional ingredient in the decision to proceed. "I think in the end it was the obvious bond...
...Arlene Mayerson, a leading expert in disability-rights law, who like many critics feels intense sympathy for these parents. "Many things that were done under a theory of benevolence were later seen as wrongheaded violations of human rights." Medicine's role is to relieve pain and improve function. But Ashley was not suffering, and the treatment was untested. Do we really want to start bending the rules in the case of the disabled just for the promise of some benefit in the future?, advocates...
Autopsy the doctors' argument, and you find that they concluded they could remove Ashley's uterus and breasts because she would be better off without them; they could keep her short because, since she'll never have a job or a romance, she wouldn't suffer the social consequences of small size. "To those who say she has a right to develop and grow," argues Gunther, "[I say] Ashley has no concept of these things." But he is talking as a scientist; the philosopher uses different tools. Just because autonomy doesn't show up on an X-ray doesn...
...Ashley may be an extreme case, but she is a terrifying precedent. Critics note that development in the disabled can come very, very slowly, so deciding when a child is only 6 to change her body irreversibly could amount to a medical form of identity theft. Ann McDonald-Cacho in Berkeley, Calif., was told there was no hope for her son Philip, who had a diagnosis of the same condition as Ashley's. There's no way to know if Ashley will ever be able to sit up or control a wheelchair with her head as Philip eventually could. "They...