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How many horror stories do you have of people with disabilities being misdiagnosed, dying from "medical errors" or just simple incompetence on the part of doctors? I have tons of them.


Merchants of Death

by Pat Figueroa

I am not one to urge others on a course of action. After all, I am an over-the-hill advocate now. More apt to follow than to lead. But in the course of the last few months I have become keenly aware of people who seem to be indifferent ("indifferent" may be an overly polite word) to our very existence.

I am speaking of the people who see those of us with disabilities as expendable, less than human, and not worthy of medical treatment or due process. I call these people the Merchants of Death: an unholy trinity of the medical field (with the pharmaceutical industry included), the media and the courts.

These are powerful forces. Once they take a position, an appeal or reversal is a near-death experience. Doctors think they are always right. The media is never wrong. And the courts? they're wrong at times; sometimes you can appeal decisions. Sometimes you can't.

As I look in retrospect at the Schiavo situation, as I watched the death of the Pope unfold on television, I see how the media relishes the death of people "who have suffered." The Pope, of course has been slowed by Parkinson's disease. So in some way he is one of us -- a person with a disability. He is also aged.

Although there are no court decisions in his case, the Pope, I understand, left explicit directions that no one was going to pull the plug on him. Hence no court, or conclave, or college of eager Cardinals ready to achieve history by burning ballots, and sending a puff of white smoke signifying the election of a new Catholic leader. No, no overeager Cardinal was going to hasten his elevation to Pope by pulling the plug on the respirator. This Pope, unlike Pope Paul I, was leaving on his terms. When he was nice and ready.

As I was writing this, the media was so eager for the end that Joe Scarboro was praying the Pope would die during his segment. What a scoop! I know they're taking bets on which Cardinals are the leading candidate. I wonder if they have a Zogby Poll on the leading candidates. Death is a serious matter, except for the media and their accomplices, the medical profession.

As some comedian said, "Death wouldn't be so bad if it wasn't so permanent." This whole thing wouldn't be so sad if it wasn't so irreversible, permanent, and sad. Do you wonder about the quality of medical care the Pope received when a urinary tract infection was allow to spread so quickly? It is bewildering how Foley catheters have become such a standard procedure of post-surgery care. And why are there so many infections with the use of these catheters? Don't they sterilize these things?

Ask yourself this question: How many horror stories do you have of people with disabilities being misdiagnosed, dying from "medical errors," or just simple incompetence on the part of doctors? I have tons of them.

Remember the Hippocratic Oath: "I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice." At one time every doctor lived by it. It may surprise you how few do now.

In today's vernacular, an "oath" is nothing more than the irreverent use of a sacred name. Vows are made to be broken. "To have and to hold from this day forward" -- a vow presumably taken by Michael Schiavo -- hardly lasted as long as the paper it was written on.

Nowadays most lawyers adhere to a Code of Ethics of professional behavior when they enter practice. But it should be noted that not all physicians take the Hippocratic Oath when they enter practice, nor do all lawyers or judges adhere to a Code of Ethics.

Don Henley, the prophetic cynic musician, put it best in his anti-media song, Dirty Laundry. Here are some of the lines to that song:

I make my living off the evening news
Just give me something-something I can use
People love it when you lose,
They love dirty laundry.

Kick 'em when they're up
Kick 'em when they're down
Kick 'em when they're up
Kick 'em when they're down
Kick 'em when they're up
Kick 'em when they're down
Kick 'em when they're up
Kick 'em all around.

Can we film the operation?
Is the head dead yet?
You know, the boys in the newsroom got a
Running bet
Get the widow on the set!
We need dirty laundry.

If we're going to stay around, a "culture of life" is not enough. I want a "culture of quality life." And we define the "quality."

Perhaps I am just a little behind the times. A little slow.

President Bush last Thursday urged the country to honor Terri Schiavo's memory by working to "build a culture of life". The Pope had spoken of a similar theme. Presumably "a culture of life" would promote, protect, and value life, irrespective of the quality of that life. But being a cynic, I say we're moving quickly to a "cult of life" -- one where the quality, the wealth, the economic standing of the individual all matter.

Why? Resources. The longer people live, whether on or off life-sustaining technology, the greater the cost to society.

Today, most states are struggling with rising Medicaid costs. If Medicaid services are not cut (cutting them would mean fewer people served, less money for doctors, etc.), states would be forced to cut other services. Usually education. Or the cost is passed to the tax payer in real estate taxes, or in some other way.

The media's angle on this issue? "a generation war." Medicaid for the old and disabled, or education for the young, and the future of our country? Even the EEOC agrees with employers who want to give younger workers better benefits than older or retired workers.

As Don Henley's song puts it,

We got the bubble-headed-bleach-blonde who
Comes on at five
She can tell you 'bout the plane crash with a gleam
In her eye
It's interesting when people die

The people who are going to be dying are us. The "the culture of life" notion is just more empty promises from the politicians and the Merchants of Death. Terri Schiavo and the Pope were just two of its newest victims. The disability rights movement has to shift direction and start focusing on this "cult of death" being pushed by the Merchants of Death.

I want to see the first bricks of the "culture of life" put in place. Soon. Like yesterday.

It is not a matter of not being dead yet. It's a matter of time and politics. If we're going to stay around, a "culture of life" is not enough. I want a "culture of quality life." No compromises. If you're pro-life, then you gotta be pro a life with quality.

And we define the quality.

Posted April 6, 2005

Longtime disability rights activist Pat Figureoa moderates the "mediatalk" email discussion list, where another version of this article originally appeared.

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