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WHERE HEALTH FUNDING MEETS DISABILITY RIGHTS: I was a little torn about the case of Ashley, the nine year old in Seattle who has a debilitating condition that stopped her brain development at the age of three months and leaves her mostly paralyzed. Her parents and doctors have subjected her to surgeries over the years, including removal of her ovaries and high doses of estrogen to stop her growth. The reasons are to make her stay small enough to be easily lifted and to prevent bed sores later in life, to prevent her from getting pregnant should be she be raped, and to spare her the confusion of the pain caused by getting her period. Though initially I agreed with disability rights activists who argued that this was clearly a violation of her dignity and humanity, I heard semi-convincing counter-arguments that it was all in her best interest.But Patricia J. Williams, in an excellent column in this week's Nation removes any doubt in my mind. She convincingly argues, �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?� And she points to the obvious, but serious, slippery slope problem, asking ironically, �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.�But she really gets at the root of the issue when she observes,
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.�Disability rights activists have told me before how important an issue this is to them: state benefits will pay for institutionalization but not home health aides. Forcing people institutions who could live independently is not just bad for them because they are socially marginalized and their privacy is invaded, it's also more expensive. Universal health insurance alone isn't the solution to this problem, we need to institute smarter more flexible rules that take people's wishes to live independently and parents wishes not to be separated from their child, and not force them into institutions.
--Ben Adler
