A Fate Worse than Death?

Many are quick to bemoan the apparent callousness of our culture and characterize Americans as self-indulgent and self-interested. Yet when tragedy strikes, as in the recent tsunami or the Red Lake shootings, there is an immediate outpouring of concern, both spiritual and material, as we empathize with the victims and especially the survivors.

Given that, it has been interesting the past two weeks to consider the reaction of the American public to Terri Schiavo’s predicament. If the polls are to be believed – and there is a certain gut level resonance to the findings, despite the questionable wording of ABC’s version – a large majority of us thought Terri Schiavo should be “allowed” to die. While some might see this as a lack of empathy, I will hazard (and “hazard” is an apt word) a guess that it might be a matter of too much empathy.

One of Merriam-Webster’s definitions of empathy is “the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner.” People considered Terri’s condition and had little trouble vicariously imagining themselves in similar straights – and didn’t want to go there.

Most tragedies, like Red Lake and the tsunami, happen suddenly and move quickly into the aftermath. We identify with the suffering and are moved to do something. The Schiavo situation on the other hand was more forward looking and slow developing yet with an ugly, predictable outcome. It was almost like watching a victim in a horror movie walk down a dark, foggy alley as the scary music mounts. It’s not that we, as viewers, necessarily want it to hurry up and be over, but confronting and empathizing with our own death or maiming is something we don’t like to invest a lot of time in. As someone who has spent years in the life insurance and disability insurance business, I know this for a fact.

Many people looked at the circumstances, pictured themselves there, and thought “I wouldn’t want to live like that.” And because it was unpleasant to contemplate, they preferred not to look too closely. Fair enough – that was pretty much my attitude three weeks ago. But is there, truly, a fate worse than death?

We can glibly say that there is, putting a premium on our intellect and dignity, yet at the end find our heart and organs stubbornly refusing to give in. I’ve also heard that philosophy from those arguing that it is better for a baby to be aborted than be born disabled or into a cruel life where it is unwanted. Yet Joe Ford(cited below), who’s doctor wanted to pull the plug on him when he was an infant, is one of many who would vehemently dispute that.

In fact, it appears that at least some disabled people view this attitude by able bodied people as being arrogant at best and bigoted at worst. Here’s an excerpt from James Taranto’s excellent commentary in today’s Wall Street Journal, asking “Who will remember Terri?”

What lasting effect will the Terri Schiavo saga have on American politics? Probably not much. However intense the emotions of the past two weeks, for most voters they’re sure to prove fleeting. But there’s one important exception: disabled Americans. Some of the most impassioned arguments against killing Terri Schiavo came from profoundly handicapped people:

– Mary Johnson, left-leaning editor of Ragged Edge magazine: “There isn’t a single disability rights activist I’ve heard from . . . who isn’t afraid that this will make liberals hate them even more than they now do.”

– Joe Ford, a Harvard undergraduate with severe cerebral palsy: “Like many others with disabilities, I believe that the American public, to one degree or another, holds that disabled people are better off dead. To put it in a simpler way, many Americans are bigots. A close examination of the facts of the Schiavo case reveals not a case of difficult decisions but a basic test of this country’s decency.” [See link below for more from Joe Horn. Ed.]

– Eleanor Smith, a self-described liberal agnostic lesbian, whose childhood bout with polio left her confined to a wheelchair: “At this point I would rather have a right-wing Christian decide my fate than an ACLU member.” Ms. Smith protested last week outside the hospice where Mrs. Schiavo lay dehydrating and starving.

I’m not willing to go so far as to call it bigotry (which may be a sure sign that I am a bigot, at least in this area) but it is worth considering what affect our attitudes about disability had in our feelings about the Terri Schiavo case. More importantly, if we have as a society put our foot on that infamous slippery slope, it’s worth considering what affect these attitudes may have on future care for those who appear to be profoundly disabled. It might be a good idea, then, to anchor our other foot in “Bigotry and the Murder of Terri Schiavo” by Harvard’s Joe Ford. I think you’ll find it both convicting and inspiring.

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