Who Speaks for Terri Schiavo? (article)

As a concerned citizen, feminist, and philosophy teacher who uses ethical and social issues to engage my students, I followed the Schiavo controversy carefully. My own experience of the case is inseparable from the FEAST listserve consideration of it. “Feminist Ethics and Social Theory” (FEAST, see www.afeast.org) is an organization of philosophers interested in gender and social issues. Members use an online listserve to communicate notices, as well as have substantial discussions. Our online discussion, centered on the disability rights movement, is frequently bookish and abstract, but occasionally betrays more personal, impassioned feelings. The uses of the Schiavo case by feminists and disabilities rights advocates reveal an inclination to deny our underlying emotions of anxiety and doubt in the face of disability or death. Feminists are fearful about losing their physical autonomy, while disability rights advocates are apprehensive about being devalued because of their reduced autonomy. Throughout the debate we supply the silent Terri Schiavo with our own voices—without really listening to each other’s.

On March 23, 2005, a posting on the FEAST list referred readers to an online site that kept an ongoing time line of Schiavo events. This post had the subject heading, “Is Ms. Schiavo’s case a feminist issue?” Those that contributed to the heated discussion that followed in fact never answered that question. Instead the dialogue immediately turned to the disability rights movement. Disability rights is a social justice movement that calls for the revaluation of the lives of disabled people. Not Dead Yet, mentioned on the FEAST list (www.notdeadyet.org), “leads the disability community’s efforts to oppose legalization of assisted suicide, euthanasia, and other forms of medical killing.” For some on the FEAST discussion, the Schiavo controversy only demonstrates how the nondisabled majority devalue and even persecute disabled people, such as Schiavo, whose life is wrongly judged worthless because of her differences from “normal” people.

As the Schiavo case is considered in terms of disability rights, a stereotypically “academic” discussion emerges, with conceptual distinctions, definitions, and references to works by well-known philosophers. One professor (arguing against the disability rights position) painstakingly lays out the distinctions between “passive versus active euthanasia” and “voluntary versus involuntary euthanasia.” Then several others haggle over the definitions of technical vocabulary, such as “expressivism.” We carefully retrace the steps in each other’s arguments to find the loci of our disagreements. The debate is abstract and precise. With each posting, contributors reach greater abstractions. Terri Schiavo becomes a mere “case study” for the demonstration of our already-entrenched philosophical positions on disability rights.

Yet just below the surface of our finely reasoned arguments lies an emotionality that our philosophical rigor cannot stamp out. Personal feelings

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arise, though always in postscripts or as asides. For example, in the midst of making her argument against the disability rights position, one philosopher lets her professional objectivity slip and writes about “Terri.” A respondent, taking the disability rights view, quips in an aside that ‘We don’t really know her well enough to call her Terri, do we?’ Frustrations are evident. One professor sympathetic to the disability rights cause complains that she must stop writing now in order to finish grading college essays in which students blatantly advocate anti-disability prejudice, just as others do on the FEAST list. A disabled professor from Canada finishes her e-mail with the pointed postscript that nondisabled feminists are just mimicking the bioethics of their fathers and brothers, and feminists need education on disability rights. A professor from the Northwest responds peevishly that he cannot educate himself because he doesn’t know just whom the disability rights group Not Dead Yet represents. The same disabled philosopher later concludes a reply by mentioning she is saddened by the lack of understanding from nondisabled FEAST feminists. On both sides of this disability rights divide, contributors’ dispassionate philosophizing masks feelings of confusion, frustration, and mistrust of the “opposition.” The angry split between Schiavo’s husband and family of birth is mirrored on the list though all of the emotions emerge only fleetingly and are often disclaimed.

I do not know the participants on the FEAST list well enough to fully assess their personal motivations. But this dialogue between the feminists and the disability rights adherents bares our deepest anxieties concerning autonomy, dependence, and death. For example, the feminist position betrays these fears: isn’t lingering for years in a body that cannot think, speak, remember, or feel worse than a merciful death? Do someone’s life-plans amount to anything if her final wishes are not respected? Shouldn’t a person be allowed to choose her own course of medical treatment? At the heart of it is the question, what will happen to me when I cannot control my body any longer? On the other side of the issue the disability rights view reveals these worries: why does disability provoke such visceral abhorrence in the nondisabled? Does dependence on medical technology really render a life worthless? How can the fear and disgust of dependence ever justify such mistreatment of the disabled? Most poignantly, would the nondisabled kill me too if they could?

I picture Terri Schiavo as I have seen her on television: her eyebrows are arched in a surprised expression and her eyes are wide. Her arms are posed akimbo, so it seems she is reaching out to us. Most remarkable is her mouth, her open and gaping mouth, from which no sound comes. Ms. Schiavo has no voice because she cannot speak for herself. Instead we speak for her, filling our words into her yawning mouth. On the television, bellicose politicians roar, plaintive worshipers pray, and officious lawyers pontificate. They would speak for her; it’s the perfect ventriloquist act. But the FEAST list contributors are not too different from those characters on television, despite our commitments to honoring women’s voices.

I fear that we in the FEAST list discussion are not hearing each other and, even worse, are not speaking in our own authentic voices. The metaphorical emphasis on voice, speaking up, being heard, and listening to each other is part of the feminist tradition, but one we fail to honor here. We are not speaking authentically for ourselves when we cloak our emotional reactions in professional objectivity. We are not listening to each other when we fail to take the other’s arguments and feelings as earnestly as our own. We are not straining to hear Terri Schiavo, whomever she is or was, but are dubbing in our own voices into her open mouth. I do not know if the disability rights’ contention that Ms. Schiavo’s life was extinguished because of our loathing of physical difference is correct. I also do not know if those who reject this position do so because they themselves benefit from nondisabled privilege. Finally, I do not know Terri Schiavo, what she hoped for from her life, or if she had hoped for her death. But I know we can do better than we have in our consideration of each other when we consider her. I silenced myself on the FEAST list because I was unwilling to post my own uncertainty about our debate, where emotions were nearly sidelined by rationalistic argument, and my equally great uncertainty about what should have been done with Ms. Schiavo. This piece ends my silence.

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