Respecting Children with Disabilities—and Their Parents

In 2004, the parents of six-year-old Ashley, who has profound cognitive disabilities, asked Seattle Children's Hospital to provide three unusual procedures that aimed, not at treating an illness, but at improving the child's and her parents' quality of life. The parents argued that by attenuating Ashley's growth with high-dose estrogen, they would keep her easy to lift and move, and thus readily integrated into their loving family life. By removing Ashley's uterus, they would spare her the distress associated with monthly bleeding that girls with cognitive disabilities can experience especially intensely, as well as remove the possibility of impregnation by a sexual predator. And by removing her breast buds, they would reduce the chances of breast cancer, which runs in the family, and minimize discomfort from the harness needed to lift her in and out of bed.¹

The Ashley case prompted heated debate about acceding to parental requests for medical treatment to cope with nonmedical problems. Children like Ashley cannot share in decision making. The parents have to choose, relying on their understanding of what is best for their child and family. To gain a sense of how various their views can be, it helps to listen to competent children with physical disabilities talk about their experiences. The more I have listened to them, the more I have come to grasp the (in retrospect unsurprising) diversity of views they have about using medical means to achieve social purposes. It has made me ever more committed to the boring but fundamental ideal of truly informed decision-making.

Refusing and Requesting Interventions

Over the years, many of the people I have spoken with have said things much like what therapist and disability rights activist Harilyn Rousso said when she described growing up with multiple physical disabilities:

[My mother] made numerous attempts over the years of my childhood to have me go for physical therapy and to practice walking more "normally" at home. I vehemently refused all her efforts. . . . My disability, with my different walk and talk and my involuntary movements, having been with me all of my life, was part of me, part of my identity. With these disability features, I felt complete and whole. My mother's attempt to change my walk, strange as it may seem, felt like an assault on myself, an incomplete acceptance of all of me, an attempt to make me over.²

(emphasis added)

Ms. Rousso argued powerfully that her disabling features were part of her identity. She was not going to change her body to reduce anyone else's discomfort.

I am not proud to confess that when I first heard people with disabilities say such things, I practiced some armchair psychoanalysis: "Yes, yes, that's very nice. You say that the problem is social responses to your disability, not your disability. But let's be honest; you're in denial." The more I heard people like Ms. Rousso say that the most difficult thing about having a disability was the way temporarily able-bodied people like me treated them, however, the more I began to take them at their word. I became convinced that if, after a process of truly informed decision-making, someone with a disability refuses the use of medical means to improve her social experience, then there is no good alternative to respecting her decision, no matter how surprising I might find it.

Frankly, however, showing respect in this way didn't turn out to be a stretch. I love the idea of learning to let healthy bodies be. I'm naturally inclined to prefer changing minds with words to changing bodies with scalpels. Using social means like words requires us to engage each other and reminds us that we are the sort of animals whose minds can change with the giving and taking of reasons. As wonderfully efficient as they can be, medical means can emphasize our growing understanding of ourselves as mechanisms to be fixed.

The real challenge was listening to children like an elementary school-age girl I'll call Isabelle, deciding whether to have surgery to make her face...