The Legacy of Terri Schiavo for the Nonreligious

Article excerpt

During the prolonged, extensive media coverage of the fierce battle this past spring over whether Terri Schiavo should live or die, almost entirely ignored was the insistent presence of individuals and organizations who were most personally concerned with both the outcome of the conflict and its legacy. Attention was continually focused on the Christian Right, who rallied for Schiavo's right to live-traditional Catholics, Protestant evangelicals, and religious prolifers. (Not all prolifers are religious, to which I can attest.) Overlooked, however, were the twenty-nine national disability-rights organizations that filed legal briefs and lobbied Congress to demonstrate that Terri Schiavo's was a disability-rights case, not a right-to-die case. They included the National Spinal Cord Injury Association; the National Down Syndrome Congress; the World Association of Persons with Disabilities; and the largest American assembly of disability-rights activists, the American Association of People with Disabilities. I have been reporting on disability rights for more than thirty years, and I have learned that many of these groups are determinedly secular and take care to not be linked with religious partisans or prolifers. Many disability-rights activists are pro-choice.

One such advocate is Mary Johnson, who runs an influential Web site (www.raggededgemagazine.com) linking many of these disability-rights groups. She stated the concerns of the disabled brought to the fore by the Schiavo case: This isn't about Terri Schiavo anymore. . . . The danger faced by "incapacitated" or non-communicative persons-people who have been declared "incompetent" and their legal rights assigned to a "guardian"-has been worrying disability rights activists for years. It is not about the "right to life"-it is about equal protection of the law. Over a dozen national disability groups have repeatedly urged Constitutional review of cases like Schiavo's.

Another writer who has drawn attention to the issue is Laura Hershey, who uses a ventilator. She wrote (www.thenation.com, April 14, "Killed by Prejudice") that when she is hospitalized, she makes sure to write "Do resuscitate!" on all her medical charts because, the last time she was hospitalized, three hospital staffers assumed that, since she was disabled, her chart had to include a do-not-resuscitate order. In addition to "my disability identity," she writes, "I'm a lesbian feminist. I'm a secular thinker. . . . I abhor the fundamentalist religious movement's selective advocacy of some rights for some people." Tellingly, she adds:

Yet many of my usual allies, people who support civil rights for other minority groups, have trouble embracing the rights of people with severe disabilities. . . . To my knowledge, no progressive or feminist group has tried to understand or address the injustices involved in this case of spousal and medical violence against a disabled woman (Terri Schiavo).

Many disability-rights advocates feel abandoned by the American Civil Liberties Union (ACLU). Despite the egregious conflicts of interest of Terri Schiavo's husband and guardian, Michael Schiavo (see my article, "Terri Schiavo: Judicial Murder," Village Voice, March 29, 2005), the ACLU was co-counsel in some of Michael Schiavo's court actions to remove the feeding tube of this forty-one-year-old woman who was not brain dead or comatose and breathed naturally on her own. Nor, according to neurologists I interviewed, was she in a persistent vegetative state.

Last November, Andrew J. Imparato, head of the American Association of People with Disabilities (on the opposite side of the ACLU in this case), testified before the Senate Subcommittee on Science, Technology, and Space on the rising dangers to the disabled of prenatal genetic testing technology. He spoke of the fear of many disabled about the return of eugenics:

When we start devaluing the lives of people with disabilities, we don't know where that's going to stop. …