The "Vegetative State" That Isn't

Image linked from The New York Times story

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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Year of the Dog, VI: Pack Dynamics

We have two adult Boston terriers who have seniority in this house. Daisy the Boxer is the junior member of the pack. My wife is big on "pack theory," and when anything upsets the dynamics of the household -- anything, that is, involving the dogs, she says "You've got to remember they're pack animals."

This applies whether the dogs are sorting out their place on the bed, who gets a treat first, or who goes first out the door. And the leader of the pack is Kitty, the older female Boston. Daisy will not go through a door until Kitty has led. Daisy will not lay upon the worn afghan thrown on the floor in my sitting room unless Kitty allows her to do so. Daisy will, however, drive Doc from his food dish and take his meal.

Kitty has never done that. In fact, Kitty often allows Doc to finish her meal. He will not take it from her. He simply finishes first, moves to her dish, and stands close by until her apparent mother-instinct kicks in, whereupon she moves away and allows him to clean her dish.

Daisy will finish her meal -- three cups or more -- and then, if allowed, rush to where Doc is eating and simply drive him away from his dish. I can feed Doc and Kitty together, but now I must feed Daisy in a separate area, and then block her access to Doc.

But Daisy makes no attempt to drive Kitty from her dish. I know there is something other than physical force involved. There's growling and snarling, obviously. But I cannot hear nothing distinctive in Kitty's growl that might dissuade Daisy from attempting to annex Kitty's food. Both Bostons weigh around 20 pounds and stand perhaps 12 to 14 inches at the shoulder. Daisy weighs close to 30 pounds now, and she's almost twice as tall.

It's interesting to observe, this sorting out of who is the leader, who controls the food. It's interesting to see that the dynamic continues outdoors. Kitty leads. The other two follow. Oddly though, we have been able, at least so far, to keep Daisy from following Kitty's lead when strangers approach. Kitty hates intruders, friendly or otherwise. Daisy, conversely, greets everyone happily, eager to be petted and praised.

And that's easier on us human members of the pack.

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Year of the Dog, V: Can Boxers Be House Trained?

We are beginning to doubt it, and we are saved from flights of cursing only by our long-term (and pre-Boxer) plans to remove carpet from the lower floors of our house. Carpet mixes poorly with wheelchairs, and so we knew it would be perhaps only a year before the carpet here began to show ugly wear.

But Daisy, the Boxer, is inordinately difficult to housebreak. We have finally arrived at the stage where she seems ashamed of her misdeeds. When the offending mark is pointed out with a "Bad Daisy, bad girl!" she attempts to hide (ostrich-like, since she's too big to crawl completely beneath it) under the bed.

Boxer afficiandos say "You cannot housebreak them until they're five or six months old." Daisy turns six months today.

Another Boxer owner said, "Put a bell on the door. Boxers are fascinated with bells." We have a bell on the door, but we still have wet spots on the carpet.

The oddity is that Daisy will whine at night, knowing that she'll be let out to do her business (and receive her treat). I've taken to letting her out each time she makes a noise during the day, and of course, praising her extensively and treating her royally post-bladder-void.

We had her spayed last week. Perhaps that will change her metabolism for the better.

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An Essay on J. D. Salinger

Like so many others of my generation, I read Catcher in the Rye as a teenager. I don't remember being deeply affected by the novel, but then again I was a somewhat self-absorbed and relatively unschooled youngster. I liked Studs Lonigan better, for some reason.

However, I know now J. D. Salinger's work altered the literary scene more than I then appreciated. My Internet Review of Books compatriot, George O'Har, has written an intriguing essay discussing Salinger, which readers can find here.

image from Amazon

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Boiled Eggs and Other Inconsequential Matters

I don't eat meat, even to the point of avoiding meat byproducts like broth and gelatin and, well, it pays to read labels. "The Original & Genuine Lea & Perrins Worcestershire Sauce" contains anchovies, as an example.

But I'm not a fanatic. In the words of my wife, I often eat "pre-chicken." I love "the incredible edible egg," and I especially like them boiled, halved, and sprinkled with "Tabasco" sauce (no anchovies included). And that brings me to the observation that long ago I learned a good measure of salt in the boiling water transforms the egg shells to the easily peel'able stage. There are other methods, but the salt-in-the-water method works for me, and it has the advantage of being simple. I suspect the salt causes the albumen (the egg's thin outer membrane) to bind to the shell.

But sometimes it simply doesn't work. Or better said, it works on all but one or two or three of the eggs in the pot. I suspect it has something to do with the genetic engineering so prevalent in the chicken industry. I suspect that layer chickens have been engineered to produce shells that are of a thickness that is both sturdy enough to ship and easy enough to crack.

Which is probably one more reason why the vegan lifestyle appeals.

Except that plants are being engineered too.

Amazon link for Just Food.

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"Attacking the Truth"

I often think aloud ... actually, at the keyboard about the concept of "truth," which I suppose relates in a measure to the concept of reality.

Which in turn is probably both infinite and quarkian.

Like truth.

In any event, there's a short piece entitled "Attacking the Truth" on the Selling Books website which was inspired by re-reading a review of Where Did I Leave My Glasses that I did for The Internet Review of Books.

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Leaving Home

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"Run away from home? Who, me?"

It's a joke around our house that I would get no more than 28 miles distant -- that's not far enough to reach a land with tropical weather, a place I would seek -- which is the advertised distance available from my fully charged wheelchair batteries.

That's why I'm intrigued with an idea of the "Journey of a Million Smiles," as announced on the coincidentally named Traveling Wheelchair website.

It won't be Kenny of the Traveling Wheelchair making the million-smile journey but rather Matt Eddy.

From June 29, 2008 to October 25,2008, Matt took his wheelchair Roll’n Across America Summer 2008 to raise awareness for disability issues and represent Matt’s Place, a charity that Matt and his Respiratory Therapist Ron Steenbruggen started to build accessible houses for people with severe disabilities so they can live independently in their communities.


Matt will leave Red Rock Park at Lynn Beach in Lynn, Massachusetts on June 5, 2010 at 10am and drive his wheelchair on back roads across the USA with a final destination of The Aquarium of the Pacific in Long Beach, California. Matt’s goal is to cross the USA in the shortest time by wheelchair while collecting one dollar from one million people. The journey is estimated to take 120 days. The funds raised from the “Million Smiles Tour” will support the programs provided by Matt’s Place Inc.

Based upon my own experience, I'm guess'timating Matt will average, say, 3-miles-per-hour. If he can roll along about eight hours a day -- let's add an extra mile to make it even -- he can cover 3000 miles in the 120 days.

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