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!