Disability and Slippery Slopes

Just as with Terri Schiavo's case, I have wondered how Ashley's case came to be framed as a "disability rights" issue. As is now well known, Ashley is a profoundly cognitively and developmentally impaired nine year old whose parents obtained medical and surgical interventions to limit her growth and prevent sexual maturation. Her parents sought (at least in part) to more easily take care of her at home. But the modification of Ashley's body touched a nerve among those who have fought against the "medical model" of disability.

In the medical model, those who cannot attain "species-normal" functioning (seeing, hearing, walking, and the like) are considered disabled. Attempts are made to normalize them by surgical repair, rehabilitation, or adaptive aids. In Ashley's case, the interventions went beyond attempts to "normalize" her, and many disability rights activists found them morally unjustifiable. In contrast, the "social model" of disability locates the problem not with the individual who is impaired, but with the society that oppresses, stigmatizes, and isolates that person. A paralyzed woman may ambulate with a wheelchair; she becomes disabled only when she must rely on others to open a door or help her maneuver over a curb. According to the social model, we should strive to remove attitudinal and structural barriers that prevent all people from participating in society to the best of their abilities, and we should do this in a way that maximizes individual autonomy and dignity.

The social model of disability originated from individuals with physical disabilities. Some contend that it is biased against those with intellectual impairments, and this has led to other models such as the "People First" movement, which endorses accommodating the needs of those with physical or intellectual impairments by focusing on their abilities rather than their impairments—seeing them as valued persons first and foremost. Even within this movement, however, disabled persons are assumed to have some level of cognitive capacity. The beliefs posted on the Illinois "People First" Web site reflect this: "We believe every person should go to a regular school," "We believe that people have a right to speak for themselves and make their own decisions," and "We believe everyone should have the opportunity to live in the community and to have REAL jobs for REAL pay."

Does the disability rights discourse tend to exclude people with severe neurological impairments? Or is "disabled" perhaps a misnomer in such cases? Advocating for Ashley's "rights" as a disabled person seems to misread the principle of "respect for persons," which requires that persons who can make their own decisions should be allowed to do so (within limits), and that those who cannot make their own decisions should be protected from harm. In the latter case, others must make decisions for them based on a best interest standard. That those who are disabled and have decision-making capacity feel threatened and frustrated by others' false assumptions about their rights, worth, and abilities is understandable. But projecting such frustrations onto all impaired persons leads to leaps of logic, as when a pediatrician, quoted in the Salon essay "Behind the Pillow Angel," declared, "What they did to [Ashley] takes away her personhood. She's a human being and with that comes all the same rights as you or I have to experience normal development and sexual pleasure." This comment does not apply to Ashley, who cannot experience normal development or consensual sexual pleasure.

In her book Waist-High in the World: A Life among the Nondisabled, Nancy Mairs wrote, "People who act on principle are likely to sacrifice the individual for the agenda, which is frequently shaped by their own, often deeply buried, presuppositions about what constitutes an acceptable life." Ironically, objecting to "the Ashley treatment" because it sets a dangerous precedent for decisions about less-disabled individuals does just what Mairs, a disability rights advocate, bemoans—it sacrifices Ashley for the disability rights agenda. I think we can do better. The ethics committee deliberating Ashley's case was right to keep its focus on Ashley. Perhaps one way to consider the downstream effects of such precedent-setting cases is by...