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Quality of Life: Who Should Decide for Disabled People?

The parents of a severely disabled 9-year-old girl subjected her to a series of nonessential surgeries. Though their decision was made out of love, this case raises too many troubling questions about medical ethics and public policy to withhold judgment.
 
 
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For the last several months, I've been fretting about the policy implications of the case of Ashley, Seattle's so-called "pillow angel." Ashley is a 9-year-old child who was born with a debilitating disorder that caused her brain to stop developing at about the age of three months. She is sensate, she smiles, she seems at times to recognize her family members and to enjoy music. But she can barely move and will never learn to speak. When she was 6, Ashley's parents subjected her body to a series of interventions ostensibly designed to keep her small, easy to lift and thus less prone to bedsores and to render her permanently childlike.

To these ends, her breast buds were removed, in part because of a family history of breast cancer but, more immediately, to accommodate the harness straps that hold her upright. According to her parents' blog, "developed breasts ... would only be a source of discomfort to her." Her appendix was removed because were she to get appendicitis it was feared she would not be able to communicate her distress. She was given sufficiently high doses of estrogen to insure that her growth plates would close, limiting her height. This, despite the fact that estrogen at such doses carries other risks, most significant an increase in the incidence of blood clots; but her parents felt that being able to easily lift her outweighed that possible detriment. Her uterus, too, was removed, to spare her the pain of menstrual cramps "or pregnancy in the event of rape."

I think this course was wrong for Ashley. Who of us, with full capacity to consent, would undergo the painful invasiveness of a full hysterectomy just to prevent cramps or as a prophylactic against rape's violations? Why then should it be permitted in the case of someone who has no capacity to protest? Even assuming a life at the hands of sexual predators were so predestined a fate, why not birth control pills?

This was also very wrong as a matter of ethics and public policy. There seems to be, in the national debate about this case, a popular consensus that the parents were well motivated, so who are the rest of us to judge? That sentiment is expressed loftily, as in Peter Singer's New York Times op-ed ("she is precious not so much for what she is, but because her parents and siblings love her and care about her"), and crudely, as in an anonymous online posting to the disability rights organization FRIDA ("I think your group is a pain in the neck ... if and when something happens to the caregiver, who will take care of the disabled person ... your group or the state who really does not give a hoot.")

I do not question either how much Ashley's parents love their daughter or how overwhelming their responsibilities must be. I do, however, fault the hospital establishment for allowing these surgeries to happen. In essence, the hospital allowed ethical questions about Ashley's long-term care and comfort to be privatized by deferring so unquestioningly to her parents' posited love. The hospital created an extreme presumption in favor of (often cash-strapped) caretakers that is heedless of medical necessity. Given a presumption premised on "love" rather than medical imperative, why not remove all her teeth to spare her the pain of cavities? Why not excise her fingernails to spare her the pain of accidentally scratching herself? Why not remove one of her healthy spare kidneys and donate it? -- that might make her and the world a little lighter. If I'm not the one who loves her, who am I to judge? That facile shrug allows us to ignore that Ashley's body was not altered to correct any physical need of her own but to address tenuous suppositions about long-term social pressures: She'd be more included in family events, she'd be less attractive to rapists (if not child molesters), she'd be more portable for the convenience of caretakers. Real medical benefits, such as lessened risks of cancers or appendicitis, were entirely speculative.

The public discourse seems to sniff at regulatory oversight as some kind of invasion of privacy. But as medical ethicist Harriet Washington's new book, Medical Apartheid , points out, the very notion of privacy is inflected by the aesthetics of gender and race and class. Ashley is -- and now always will be -- "cute," "little" and "a white girl," as bloggers bluntly put it. This embodiment evokes a very particular social response. It is harder to imagine doctors so compliantly agreeing to castrate a boy, say, in order to allow his wheelchair seatbelt to fit better. Similarly, I wonder if a poor black child would have been so easily romanticized as a "pillow angel."

The glib libertarianism of "Who are you to judge?" masks not only these inequalities of social response but also our failure to grapple with the woeful state of a healthcare system that leaves all Americans, even middle-class families like Ashley's, so burdened. We are the wealthiest nation on earth, yet we cannot find the resources to provide the common medical devices that would have better enabled Ashley's family to care for her, unaltered, in their home: a simple hoist, mattresses that prevent bedsores, the assistance of home healthcare workers. Ashley's parents apparently felt driven to the lengths they went to because they did not wish to institutionalize her as she grew older, bigger, more cumbersome. They feared her institutionalization with good reason, that fear reflecting but a fraction of the anxiety generated by our public health crisis.

As I write, there are hearings in Congress about conditions at Walter Reed Army Medical Center -- mice, mold, overcrowding and impenetrable bureaucratic ineptitude. It is, according to commentators, an issue that has "touched a public nerve." It's about time. As tragically high numbers of soldiers return from Iraq with shattered bodies and traumatized minds, the scandalous deficiencies of our public hospital system, and the scandalous costs of our private one, have never been clearer. Unlike Ashley, these men and women cannot be surgically miniaturized or pixied up with heavenly pet-name metaphors. They are full-grown, complex, their bodies heavy with sorrow, with need. Perhaps it is they who will provoke a collective re-examination -- a call to judgment -- of our polity's obligations to broader notions of human dignity.

Patricia J. Williams, a professor of law at Columbia University and a member of the State Bar of California, writes The Nation column "Diary of a Mad Law Professor." Her books include The Rooster's Egg (1995), Seeing a Color-Blind Future: The Paradox of Race (1997) and, most recently, Open House: On Family Food, Friends, Piano Lessons and The Search for a Room of My Own (Farrar Straus and Giroux, 2004.)

 
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