Thursday, February 4, 2010

The "Vegetative State" That Isn't

Perhaps the ugliest public fight over a comatose person was that surrounding Terri Schiavo. No one wanted to see politicians from Bush on down, and across the spectrum, use her, but it still surprises me that very few people comprehended that she was to be starved to death if her husband's wishes were implemented. I do not know what I would do if a person I loved, or for whom I had responsibility, were to become comatose and (apparently) unresponsive. I do know that I would not without food or water.

The Schiavo debacle is in the news again because of a recent study, Willful Modulation of Brain Activity in Disorders of Consciousness, in The New England Journal of Medicine as translated for popular consumption by The New York Times and The Washington Post, among other venues.

I've participated in a list of media activists who speak out on disability in society for perhaps a dozen years. One of the members who have, to use a phrase from the 1960s, "raised my consciousness" about disability is William Loughborough. He spoke out this morning about this study.
The claim that Terri Schiavo´s case didn´t fit in with the new information might well also be as wrong as the "diagnosis" itself has been shown to be - 40% misdiagnosis rate.

Skip the "medical model" please. We are clients, not patients and our disabilities are better "dealt with" than "cured".

From the Post article: "In some cases, the damage to the brain is so severe that it is simply inconceivable they could produce any responses," Owen said.

Of course this self'-fulfilling prophecy is what allowed them to be only slightly better than chance when they made the "diagnosis" - the science shows them how things that were "inconceivable" become routine but meanwhile they ignore the fact that Terri Schiavo was responsive as evidenced in video clips. We are people of diversity, not "patients" and our human rights are being trampled by continuation of the totally discredited "medical model".

While the NEJM has a scientific tone, there is much of "The Other" in both of the news reports, which reveals itself in quotes like this one from the Post article.
"If a patient wanted to die, if they were asked, 'Do you want to die?,' could they explain themselves adequately?" said Joseph J. Fins, chief of the division of medical ethics at Weill Cornell Medical College. "If they say yes, what does that mean? If this person said yes but meant maybe, or it was 'sort of yes,' we may not be able to understand that sort of nuance. You have to be very careful."

Such an attitude reveals projection of the doctor's attitude toward disability, which does not bode well for his interaction with the patient or with those who are making decisions.

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