Terri Schiavo died on March 31, 2005, not from her 1990 brain injury but because of prejudice, the common assumption that life with a significant disability is not worth living.
Unable to speak for herself, Schiavo became the subject of a noisy debate open to anyone with a microphone or an Internet connection. “She wouldn’t want to live like that,” many said. “She wouldn’t want to die like that,” said others.
Did Terri Schiavo understand what went on around her? Did she feel love, hunger pangs or the desire to live–or to die? I don’t know, and I don’t think anyone knew for sure. Experience has made me skeptical of physicians’ pronouncements and prognostications, especially about people with disabilities. I know several dynamic individuals who were once written off by doctors as terminal, vegetative or otherwise hopeless. Some would be dead today if not for the efforts of someone who believed in their right to live. Maybe Schiavo could have recovered too–or maybe not. But her odds for recovery should not determine her continued support, at least not in the absence of a clear advance directive. Making the promise of improvement a prerequisite for food and water reveals a profound bias against disabled people.
I have my own biases. I’m a woman with significant physical disabilities. To many people, I’m the one who lives “like that.” During my last hospitalization, three different staffers voiced assumptions that my chart must contain a do-not-resuscitate order. (Like most people, I had no order of any kind. I’ve since written “Do resuscitate!” on every medical form that’s come my way.)
I’m not cognitively impaired like Schiavo, but to me that’s not necessarily a crucial distinction. Legs, brains, lungs–they’re all parts of the same fleshy package. Some parts may not work, or may work differently. No two disabilities are exactly the same, but artificial hierarchies of ability don’t clarify anything. Virtually everyone with a significant disability, regardless of type, has faced hardships, prejudices and denials. Yet most choose to live. The problem arises when someone cannot make that choice known, and must rely on the assumptions of nondisabled others–who, studies show, consistently underrate the life satisfaction of people with disabilities.
Schiavo’s mental limitations were indeed severe, though I reject terms like “vegetative” to describe any human being. Her environmental restrictions were less apparent to some observers–but not to me, because my quality of life depends on supports that Schiavo didn’t have. My wheelchair gets me out into the world, while hers sat broken and unused. She was essentially institutionalized; in contrast, I live in my own home, where I supervise the attendants who feed, shower and dress me. My loved ones understand my values and will advocate for my rights together if ever I can’t speak for myself. Schiavo became the object of a family feud.
Finally, I still get to use the ventilator, which helps me stay alive and healthy, while a court order denied Schiavo her feeding tube. What a difference, physically and politically, a simple plastic tube can make!
My mechanical ventilation device sits on the back of my wheelchair, or near my bed. From it emerges a plastic tube with a mask that fits over my nose. When I inhale, the machine pumps air into my weakened lungs to deepen my breath. A feeding tube is even more basic–it’s like a flexible drinking straw through which food is poured into a healed hole in the abdomen. My friend and poker pal Carrie uses a tube like this for most of her meals, and for an occasional shot of Scotch.
We view these devices as routine, unremarkable–not as some creepy, futuristic cyborg taking over our bodily functions. Yet some courts brand feeding tubes and ventilators as “life support.” That label puts us in a different legal category, with less reason to live and fewer rights. I call that discrimination.
I was equally pained by Schiavo’s slow, deliberate death and by the rhetoric surrounding it. One side wrote her off as a valueless thing, the empty remains of a once-vital woman. The other side objectified her as a pro-life symbol as they denounced “activist judges” and invoked “God’s wrath.” As the issue polarized along simplistic right-left battle lines, I found myself on the wrong side, in enemy territory.
The fact is, I have other biases besides my disability identity. I’m a lesbian feminist. I’m a secular thinker who believes government should serve the public good. I abhor the fundamentalist religious movement’s selective advocacy of some rights for some people.
My partner and I squirmed as we watched Senator Rick Santorum, Representative Marilyn Musgrave and others who championed Schiavo’s rights. Robin and I are both disabled women. If either of us were incapacitated, these right-wingers might argue to keep us alive; but they would oppose our right to stay by each other’s bedsides.
And it’s not as if conservatives consistently support disabled people’s interests. While they defended one woman’s right to live, they jeopardized many other disabled lives by attempting to gut Medicaid, which provides essential healthcare and support services.
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. Even dedicated progressives, perhaps overwhelmed by their fear of disability, seem to lose sight of the core value of human equality. 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.
While the nondisabled right and left fought their culture war using Schiavo as a weapon, a third side–barely audible over the ideological screaming–offered a truly progressive alternative perspective. Representing people with the most genuine stake in how people like Terri Schiavo are treated, twenty-six disability organizations highlighted the real issues: How can the rights of people deemed incapacitated be protected? How far should guardians’ powers go? As hospitals start defining some treatments as futile and some people as expendable, who draws the lines? How can we provide healthcare equitably, without restrictions based on disability?
Finally, how can our society come to grips with the reality of disability, so that it becomes something to accept and accommodate, not something to fear, hide or eliminate?