Pillow Angel Ethics

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And that argument sends disability-rights advocates around the bend. "Benevolence and good intentions have been among the biggest enemies of disabled people over the course of history," says 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 ask.

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't mean it can't be harmed by a scalpel. And if rights are inalienable, they exist whether the patient is aware of them or not.

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 flew to the worst-case scenarios," she says--worrying about what might happen to Ashley and intervening drastically to prevent it. Removing her uterus will not protect her from abuse, only from pregnancy. Was there really no better way?

And how far would doctors go to make a child more portable? Would it be O.K. to amputate her legs, since she can't use them either? Frequent touch is indeed important, but is it really so much harder to hug someone who is 5 ft. 6 in. or take her to the table at dinnertime? Turning people into permanent children denies them dignity and whatever subtle therapeutic benefit comes from being seen as adults. "I know they love their daughter," says Julia Epstein, communications director for the Disability Rights Education and Defense Fund and mother of a disabled child. "But they refer to her as the pillow angel. I know that's meant to be a sweet term, but it's terminally infantilizing."