Even though the Terri Schiavo controversy has all but vanished from the news these days, the family's graphic amateur videos of Schiavo's body lying helpless in her hospice bed and broadcast all over the country still occasionally come back to me, especially the frozen image of Schiavo's mother supporting her once-lovely daughter's head with its now vacant eyes, slack, slightly opened mouth, and neck scarred from what appeared to be a tracheotomy incision. That grim picture was always used as part of the "visuals" on TV news reports as well as in newspapers and on protesters' handmade signs, so that if one wanted to follow the story, there was no way of avoiding it. But at times a more ghostly and more invasive image comes back to me of Schiavo's bared abdomen with its feeding tube, and it is ghostly because every time it appeared on TV, I immediately--instinctively--turned the channel. I know that her parents believed many of these video snippets demonstrated that their daughter was still "responsive." But from my colder, more distanced perspective, not only did they suggest the opposite, they also mercilessly invaded the privacy of this extremely vulnerable being as they delivered her body to the frenzy of the commercial "infotainment" industry.
What was shown and said about Schiavo during those excessively publicized two weeks kept putting me in mind of a horrifying scene from Milan Kundera's The Book of Laughter and Forgetting, where the narrator pictures a woman in the act of remembering her husband's lonely death in a hospital. Tamina is told that her husband's head hit the threshold of the door as orderlies transferred his body to the morgue. After reflecting upon the "two faces of death," Tamina realizes that the existential dread of nothingness is in the end less terrifying than the "material being that is the corpse":
Being a corpse struck her as an unbearable disgrace. One
minute you are a human being protected by modesty--the
sanctity of nudity and privacy--and the next you die, and
your body is suddenly up for grabs. Anyone can tear your
clothes off, rip you open, inspect your insides, and--
holding his nose to keep the stink away--stick you into the
deepfreeze or the flames.
As Kundera makes brutally clear, what remains after death is the body as mere thing, and a thing, by definition, is not accorded the protection of modesty or shame--notions which today have acquired an old-fashioned, even quaint, ring, but which previously defined the limits not only to what could be known, seen, or heard about another person, but also what could be done to that person. Schiavo, of course, was not yet a corpse, not yet a thing, since her body still lingered on in the medicalized netherworld between life and death, a realm where the safeguards guaranteed by civilization--"the sanctity of nudity and privacy"--are, by necessity, routinely ignored. No doubt during those 15 years in hospitals and hospices Schiavo's body had been exposed to probing eyes and hands in ways that her mind, had Schiavo been conscious, would have experienced as "an unbearable disgrace." But I couldn't help feeling that in those final days of Schiavo's existence, her family's widely circulated videos of her as a kind of dolled-up corpse, as well as the incessant public talk about "pulling the plug" of her sustenance (a phrase that suggests such a decision were of no more import than pulling a vacuum-cleaner plug out of a wall), had subjected the person that was Terri Schiavo to indignities and humiliations on a new order.
As if this line of thought were not depressing enough, two other images that I had hoped had fallen into the lost minutiae section of my memory suddenly appeared before me. One was a newspaper description of a group of parents who traveled to Schiavo's hospice, pitilessly displaying before the crowds their own severely disabled, wheelchair-bound children, including one helpless child whose parents had uncovered his feeding tube for the whole world to see. The other was an even more vivid image--so vivid that I think I must have seen a photograph of it--of members of the disability activist group, Not Dead Yet, who had crawled out of their wheelchairs to lie next to one another on the ground outside of Schiavo's hospice, some with their feeding tubes brazenly on display for the reporters. As I tried to get my mind around these acts of willful self-exposure, I felt myself transported once again to the psychically brutal world of Kundera, this time to The Unbearable Lightness of Being, to a scene where the sight of a building in ruins makes a character think of her mother, a woman lacking all sense of shame: "that perverse need one has to expose one's ruins, one's ugliness, to parade one's misery, to uncover the stump of one's amputated arm and force the whole world to look at it."
This fictional character's attitude toward the shamelessness of exposure--which I fully embrace--is no doubt precisely the attitude that the shock tactics of Not Dead Yet were designed to confront, much like the shock tactics of Queer Nation in the 1990s. I could almost hear their accusing rejoinder: Why shouldn't we expose the stumps of our amputated arms? Why should we be forced to cover up what we are? Why should we accept your standards of "normal"? The old-fashioned answer would be, cover up so you maintain your dignity as a person. But champions of exposure, who always think of themselves as on the side of progress, understand such an answer as a confession of squeamishness, evasion, paternalism, or outright oppression. In the face of such barrages of incrimination I inevitably feel caught up short. And in this case, two revolutionary slogans of the 1960s came back to taunt me with particular force: "the personal is political"; "nothing is sacred."
Still, I never seem able to escape the visceral feelings of mortification that I experience whenever I see the intimate details or vulnerable bodily processes of a person's life being paraded before complete strangers, and it makes no difference to me if such invasions of privacy come from the victims themselves--I immediately thought of the flourishing multi-billion dollar pornography industry, but also of the perpetual therapeutic confessions of the famous and the obscure on talk shows, the various forms of self-abasement that ordinary people compete to endure on "reality" shows, the endless flood of tell-all memoirs by celebrities. It seemed to me that our common world was awash in obscenity and small talk and that we had become so used to its low tone that few people could imagine anything different.
And then I recalled the Clinton sexual harassment case, the impeachment hearings, the Starr Report, and all the tawdry (and often laughable) intimate details that anyone living through that truly wanton historical moment could not escape knowing. I felt something approaching amazement when I remembered that Clinton, after having somehow survived having his private life dragged through the mud, was still happy to tell the world his side of the story, and much else of an embarrassing personal nature, in his long-winded autobiography. All of which called up from somewhere in my memory the words of a long-forgotten eminent Victorian, James Fitzjames Stephen. As I went to my bookshelf to find the passage I was thinking of, I wondered whether Stephen's words would still be intelligible to people like Clinton: "That any one human creature should ever really strip his soul stark naked for the inspection of any other, and be able to hold up his head afterwards, is not, I suppose, impossible, because so many people profess to do it; but to look on from the outside is inconceivable." To live in our world today, I thought, was to be forced into the position of a voyeur.
With this ugly sentiment in mind, I found my thoughts returning to Terri Schiavo and to those intensely private moments of her in the hospice that were broadcast for all the world to see and to the Not Dead Yet activists who believed it was a good thing to expose their bodily infirmities to the gaze of curious strangers and to those parents who willingly exhibited their severely disabled children before the objectifying lens of cameras. And then I thought, with wonder at the melancholy haphazardness of history, of how the once-revolutionary slogans, "the personal is political" and "nothing is sacred," could be put to use in completely unexpected ways. With that dispiriting thought, I decided to go outside and take a walk, as it was a beautiful, bright, spring day. Just as I was going down the stairs, trying to banish from my mind the shameless atmosphere of exposure that has engulfed even those who are the most vulnerable among us, I was struck by an image, as poignant as it was defiant, from what now feels like an entirely different political and moral universe: I could see a picket line of meticulously groomed black workers on strike, under the leadership of Martin Luther King, holding signs proclaiming their dignity, "I am a man."
Rochelle Gurstein is the author of The Repeal of Reticence (Hill and Wang).
By Rochelle Gurstein