Saturday, December 5, 2009

Why The Case of Rom Houben Resonates.

Wesley J. Smith writes today about why he thinks the case of Rom Houben, the Belgian man thought to be in a coma for 23 years and recently discovered to be, according to scientists, "locked in" and fully conscious, resonates with the public.

He ties in Terri Schiavo, stating that she is still with us and that her story is the subtext of the Houben story. It's a disingenuous remark to a story that makes Schiavo the subtext.

Smith is close with the Schindler family, Schiavo's mother, brother and sister (their father died earlier in the year) who run the Terri Schindler Schiavo Foundation dedicated to preventing removal of severely disabled patients from life support. The family have stated that the Houben discovery vindicates their fight for Schiavo's life - and presumably their work to end other such occurrences.

Smith writes:

I have an article in the current Weekly Standard on the Rom Houben case. I find it fascinating that that Terri Schiavo–and what happened to her–is the subtext of the entire event. From my article:

The case of Terri Schiavo–who died five years ago next March, deprived for nearly two weeks of food and water, even the balm of ice chips–continues to prick consciences. That may be one reason the case of Rom Houben, a Belgian man who was misdiagnosed for 23 years as being in a persistent vegetative state, is now receiving international attention.

When Houben was injured and misdiagnosed, the idea of dehydrating him was unthinkable. No more:

During the years that Houben was thought unconscious, society changed. Bioethicists nudged medicine away from the Hippocratic model and toward “quality of life” judgmentalism. Today, when a patient is diagnosed as persistently unconscious or minimally aware, doctors, social workers, and bioethicists often recommend that life-sustaining treatment–including sustenance delivered through a tube–be withdrawn, sometimes days or weeks after the injury.

I discuss the notorious Haleigh Poutre case, (about which I wrote more extensively here), the little girl who would have been dehydrated but for the time it took to get the Massachusetts Supreme Court’s approval, allowing her the time to wake up. I discuss the controversy over whether he is not actually communicating. And I point out something that I think is just beneath the surface of the entire discussion:

In any case, why the sour response to a good news story? It is hard to shake the feeling that the emotional crosscurrents stirred by Terri Schiavo have been stirred again. Timereported that Schiavo-type “legal fights are likely to become more common as classifications of brain-injury severity are revised.” According to ABC, Schiavo’s family “felt both heartbreak and vindication” about the story.

And so, it seems, Terri Schiavo remains very much with us. Indeed, every time we hear about the newest “miraculous” awakening, we find ourselves wrestling again with the moral import of all that happened; haunted it seems, by her beautifully smiling face.

I've been watching this "pro-life" scene for a while now and I'm only haunted by Schiavo's smiling face in that it is used, she is used, a sentimental storyline of Schiavo's life, trauma, diagnosis, surrounding court battles, media drama, overreach of a Republican government set on using Schiavo as a martyr for their political cause, is used to make a martyr of Schiavo. Note my post a few days ago of a fundraising email the Foundation sent out on her birthday. Note the autopsy, readily available online, that confirms that Schiavo had no cognitive abilities. Note my report form the PA Pro-Life conference in October where Bobby Schindler, Schiavo's brother, used his sister's story to proclaim his faith and my account of the sad, unnatural, sentimental, perpetual state of grief he is in. Note the horrified numbers of Americans who not only winced at the 2005 legal fiasco that became Terri Schiavo's death but the numbers of Americans who ran out to file advance directives saying they did not want to be Schiavo. And not the numbers of Americans who felt the Republican government had no role in working to prevent her death.

Whether the resounding reaction was to government intervention or to the disgusting use of a young woman's life to make a spectacle of private medicine, to the loss of privacy, to the horrors of our realization that we too could be kept alive by modern technology long after our mental state has disappeared.

Terri Schiavo's life and death resonate over these last 5 years because they represent what is wrong with medicine, state law, and church doctrine interfering with private medical decisions. She resonates with us because "pro-life" groups continue to lobby for her martyrdom, have made a passionate mockery of her suffering, because ideology tried to win a moral battle and the courts didn't didn't let it.

And because we are horrified by the way medicine has not only enabled us to live longer but die longer. The hypocrisy of the church clinging to science when it enables artificial prolonging of suffering but denial of it when it allows mothers autonomy over their reproduction or the terminally ill to choose medical treatments.

And the Houben case, despite what Smith says, works in the same way partially because we don't believe he is communicating by typing, because we recognize that being "locked in" for 23 years is as horrifying as being buried alive, because we see behind the sentimentally sweet denial of death his mother has lived in for 23 years, the great encroachment of medicine, the use the church makes of such a man, the use the Terri Schindler Schiavo makes of such a man, and the great myth-making the media has spun to once again play on our horrors, our fears, our beliefs, and our guilt. The mockery of the church claiming adherence to "natural death" when such does not exist for a patient like Schiavo or Houben.

Yesterday I reminded my medical proxy of where my advance directive is. I pray - yes I do - that should I be in a car crash, like Houben was so many years ago, I would be removed from all artificial life support. Not kept around for my family and friends to fawn over, not artificially locked inside a deformed body, in isolation for 23 years, not told by medicine or the church or the state how I am to life.

This is not a show of my "'quality of life' judgementalism," not depression or self-loathing, not discrimination against Houben or other disabled members of society, not an expression of my "culture of death" membership, not denial of God's power, not disdain for the move medicine has made from the Hippocratic oath (total bunk), not fear of being a burden, not fear of having my ass wiped by a nurse, not anything those who work to impose their righteous piety on patients call disrespect for life. It is my moral right. And I am no less a lover of life, all life, for it.

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