Why we can’t forget Terri Schiavo

(RNS) — Twenty years after it reached its terrible conclusion, few of us may remember or understand just how strongly the case of how we think about Terri Schiavo gripped the United States in the late 1990s and early aughts. In the culture wars of the day, no less hot than today, Americans were very much taken up with what, precisely, makes our lives valuable. The debate over whether a woman’s husband could starve and dehydrate her to death after she had suffered a catastrophic brain injury became a debate in part about who we counted as “us.”

The case was discussed from kitchen tables to workplace break rooms to the local Florida statehouse and eventually to the Congress. And of course it dominated the 24/7 cable news stations’ coverage.

The quick history is this: Theresa Marie Schiavo was a 26-year-old living in St. Petersburg in February of 1990 when she went into cardiac arrest, possibly as a result of a self-imposed weight-loss regime. She was resuscitated by paramedics but remained in a coma, later diagnosed as “a persistent vegetative state.” In 1998, after repeated attempts to bring her back to consciousness, her husband, Michael, petitioned the state to allow her feeding tube to be removed.

Terri’s parents insisted that she would have considered her life valuable, even in a so-called vegetative state. They begged Michael Schiavo to divorce her so they could take over her care. He refused, and after years of legal wrangling, and an order by then-Florida Gov. Jeb Bush to reinsert Terri’s feeding tube, a Florida court ruled that her food and water must be discontinued.

When she died days later, Michael Schiavo, who had developed another relationship not long after Terri’s injury that had already borne two children, had Terri’s gravestone inscribed with the claim that she “departed this earth” on Feb. 25, 1990, and was “at peace” March 31, 2005.

As little mentioned it is today, the case has many implications for our time, but the gravestone’s inscription suggests what may be the most important one. The term “vegetative state” is not only offensive (no human being is a vegetable) but also wildly imprecise. Some understandably confuse it with brain death (itself a slippery concept, which until very recently meant death of the whole brain). But Terri was very much a living human being, with sleep and wake cycles, responses to light and darkness and music, and more. What could it mean to say that Terri had “departed this earth”?

Beyond being a rhetorical accompaniment of a raw power move of simply discarding human beings when their dignity becomes inconvenient, to say a person has died when their body lives on is a throwback to a kind of Manichaean dualism in which we as persons are something other than our living bodies.

The Schiavo case was a new front in the culture wars of the day because it raised many of the same questions as abortion, which was being fought over equally vociferously then. Living humans with hearts, eyes and fingernails were also deemed to be nonpersons by our legislative and legal regime and thus could be discarded as trash without violating the fundamental rights of any person. For the anti-abortion movement, the fight to make sure Terri’s parents could not care for her was as another assault on fundamental human dignity and equality. Pro-choicers worried that if a profoundly disabled Terri Schiavo counted the same as any other human being, it would have bad implications for abortion’s legality.

Today there is a battle going on over the case of Jahi McMath, a young Californian whose medical team confidently deemed her brain-dead in 2013 but whose family sued to continue life support and eventually took custody of her to support further treatment. A key moment for her family was when McMath began menstruating, showing that her body clearly had neuroendocrine function that was integrated with other organ systems.

It has rocked those who want to see the concept of “brain death” expanded to include those with certain parts of their brain still functioning. Instead of questioning the concept of brain death, true believers in the new Manichaean dualism moved to instead expand the idea of “death” to include persons, like McMath, whose bodies are still progressing. Some, like those associated with the American Academy of Neurology, are even pretending that a “consensus” exists in favor of this position.

One problem with this culture war against human dignity and equality is that it could end with the dismissal of humans with advanced dementia, another human population that no longer has the traits that privileged, able-bodied persons deem valuable. Peter Singer, Ronald Dworkin, Thaddeus Pope and other influential thinkers and activists are already making the case that we can kill these human beings. We’ve seen this happen in Canada and Europe. In one disturbing case in the Netherlands, a woman with dementia had to be held down and killed after she woke up and apparently resisted what was being done to her. California appears to be trying to expand its assisted suicide laws to include people with dementia.

A percentage of those deemed to be in a vegetative state actually show evidence of consciousness by being able to answer yes-or-no questions or by imagining that they are engaged in certain kinds of activities. Also, since at least 2015 we’ve known that a significant percentage of these patients can also benefit from therapies.

Terri Schiavo may well have been conscious after her catastrophic brain injury. But her various abilities or potential for abilities are by no means the most important thing about her. Or about any of us. Our value comes, not from what we can do, but from the kinds of creatures that we are. We have dignity and equality on the basis of our common humanity — a shared nature that reflects the image and likeness of our Creator — and nothing else. Accidental traits matter not. 

Terri’s dignity and equality were deeply inconvenient for her husband and for power players in a dominant secularized culture trying to divest itself from its cultural inheritance with respect to the value of human beings. Twenty years later, two things are clear. First, those pushing neo-Manichaean dualism have made significant headway and appear to be headed for more victories in their culture war. Second, the way to resist their incursions is by formally, publicly and confidently embracing the theological basis for fundamental human dignity and equality.