by John Kelly
The TV talking heads have the nerve to wail about "a family tragedy." It sure is a tragedy, it's a tragedy for Terri's parents and brother and sister. Why wouldn't it be? They love their daughter, their older sister. They see her inside what outsiders call "an empty shell." She adds meaning to their life. Her death will cause them serious, grievous harm. "Irreparable harm," in other words. Isn't that supposed to be a good reason for an intervention by the Supreme Court? Maybe Terri has to run for president to get some consideration.
As Harriet McBride Johnson emphasized on CNN on Wednesday night, and spelled out in Slate (in the Washington Post as well), Terri is being killed specifically as a disabled person, because of an accommodation she requires to live her life. As Johnson stressed again and again, people with disabilities are accustomed to all sorts of adaptive devices that make our lives run smoother. One of these is a feeding tube, which is a simple rubber tube that gets food and liquid into the stomach. Sort of like a fork or a spoon. Or chopsticks. Or hands.
How, exactly did taking in food and water get reclassified as medical? It sure doesn't seem medical to us. One of my best friends, Connie Panzarino, used a feeding tube for years. Big deal!
Without the reclassification of this length of latex as a medical intervention, Michael Schiavo would not be able to have her killed. So we disabled people conclude that feeding tubes became medical interventions when another justification was needed by the compassionate killers to knock another one of us off.
Television viewers are now allowed discreet glimpses of the rubber offender, which comes right out of her stomach! Amazing, step right up and see it, ladies and gentlemen. Latex tube snaking its way out of a woman's body!
And people talk about letting her die with dignity. What a sick, sick joke that is.
But if people "tolerated" her latex orifice , if killing her this way was off-limits, maybe the compassionate killers could remove the catheter for her urine (how come we have not been told whether she has one?). We could all wait expectantly for her bladder to explode. "Medical experts" could come on CNN and speculate how long it would take for her bladder to blow up , and exactly how the body would be poisoned when it did. I'm sure the American public is very interested in learning how that specific form of death might be different from ketosis, the new word of the week. Maybe the news anchors could blow up balloons on the air to show what the bladder looks like.
I feel a kinship with Terri, because I depend on a tube almost exactly like hers , only mine carries away my urine in a very efficient manner (well, mostly efficient). As I lie in bed at night, hearing that wonderful drip-drop of pee hitting the bottom of the gallon jug that I strive to overflow, I am so glad that I have a suprapubic tube rather than having to stumble out of bed onto a cold tile floor and try to find the bathroom. I love my suprapubic tube. And I bet Terri , or Terri's body if you insist, loves her tube, too. Her body certainly thrives on what comes in through it.
Or maybe the compassionate killers might consider ceasing any care for her bowels. How long, the "medical experts" could speculate, would it take for her colon to perforate? Maybe Las Vegas could take bets.
Disabled people are used to dealing with all these issues, they really are not that big of a deal to us. Hey America, maybe it is time for someone besides disabled people to learn how to "adjust," because the nondisabled majority sure seems to have a serious psychological problem with feeding tubes, catheters, and any whisper of incontinence. What's with throwing in the towel, getting out that gun, and trying to reach the promised land, "death with dignity?" What happened to that good old American optimism?
Americans really think that they are the best people in the world. They don't have a clue that much of the rest of the world is just appalled by us, by the murderous callousness that we call "respecting individual rights."
What a shameful, shameful chapter in American history!
Posted March 25, 2005
John B. Kelly is a Boston-based disability activist working on a Ph.D. in Sociology at Brandeis University. His other stories for Ragged Edge have included Incontinence. Visit his blog at http://www.neighborhoodaccess.org.