Warning! Medical care may be hazardous to your health.

   by Barbara Knowlen


Statistical proof: There are 80 million gun owners in the U.S., and 1,500 accidental gun deaths per year. There are 700,000 physicians in the U.S. who cause 120,000 accidental deaths each year.

It looks to this mathematician like doctors are approximately 9,000 times more dangerous than gun owners!

And who are they most dangerous to? Us, of course. People with disabilities, people who depend on medications, treatments, supplies, and attendant services just to survive ó all of which have to be prescribed through a doctor.

Factor this in, too: people with disabilities get sick more often, and get a lot sicker than, people who are not disabled. And have less money to buy the best specialists, the most reputable doctors.

Too many of us donít take the threat of dangerous doctors seriously. I didnít.

I am a disability rights activist, with two decades in the independent living movement. I believed, preached, and lived the conviction that our lives cannot be defined by medical issues, that we cannot be controlled by doctors. I still do. But now I know how easily doctors can kill us.

Michael and I moved to Oriskany Falls, NY, from Minnesota in March of 1999. We bought a house on four acres on a hill above town. We moved there so Michael could go to a school to learn to make furniture. I was getting ready to take my business, Barrier Breakers, into cyberspace. I was in good health when we moved and for the rest of the year. The new millennium was full of hope and promise for us.

For a New Yearís Eve 2000 celebration, we watched the ball fall at midnight not in Times Square, but in downtown Oriskany Falls. An 80-foot crane was up on a hill a couple blocks up from the center of town (that is, right at the edge of town) hoisting an eight-foot wrecking ball covered with thousands of white Christmas lights. They turned on its lights and slowly lowered it at midnight as a crowd of about five hundred people cheered. We had a wonderful time, unaware of the runaway train that was about to hit our lives.

Maybe from the crowd, maybe from the cold, I got sick, and four days later Michael had to take me to the rural hospital nearby. I was having difficulty breathing. I needed oxygen and suctioning, but I was alert, and not in respiratory distress. I weighed my usual 95 pounds. I had no skin breakdown.

When Michael found out the hospital had no bronchoscope, he asked the admitting physician, who was also my primary care physician ó a hyperactive little weasel who chattered incessantly and never listened ó to transfer me to the big teaching hospital in Syracuse, forty miles away. The weasel flatly stated that a bronchoscope could not be used for suctioning (the first and not the last of his wrong ideas), and kept me there.

Over Michaelís and my objections, he tried one ineffective (as we told him they would be) antibiotic after another. By the third day I had aspirated food that the nurses tried to feed me while I was coughing. I got pneumonia. The weasel put me on a vent.

He ignored our requests to put me on a controlled-air-loss mattress to prevent my skin from breaking down, but he lost no time in putting me in restraints. Restraints? His idea of a real necessity in the care of an aging and very ill quad.

Michael called my son, who flew in from Missouri, and our cousin, who practices law in Syracuse. Together, two days later, they were able to get me transferred to the teaching hospital. I arrived there on the vent, unconscious.

My internal pouch, built to hold 500 cc. of urine, had 1,800 cc. in it from not being emptied correctly. I had gained 36 pounds in water weight. My heart rate and blood pressure were out of control. And since Iíd been left lying in filth for hours on a regular mattress, a six-inch diameter area on my butt was raw meat.

I remained hospitalized in Syracuse in the intensive care unit for 63 days.

Discharged to my home in mid-March, I had to remain in bed until early in May for my butt to heal so I could sit in my wheelchair. The tracheostomy stayed in until May 21.

I have never been so sick, for so long, in my life.

As soon as I could stay up at my computer for a few hours and use the phone again, I tried to learn what had damn near killed me during my five days at the rural hospital. My memory of those days is sketchy due to the drugs they used on me when I was on the vent. So it took me a while, looking over records and talking to people, to put it together.

It all became chillingly clear as I looked into it that I had survived the lethal combination of a doctor who shouldnít be practicing medicine and inadequate nursing care.

Drawing of hospital with gallows atop it.

If Michael hadnít argued and finally called in the relatives and a lawyer, I would have died. And of course the cause of my death would have been listed as "pneumonia secondary to quadriplegia," after the weasel "had done all he could."

You may wonder why this idiot, scurrying around a rural hospital, malpracticing medicine with a degree from a Philippine diploma mill and a provisional license from New York State, was my primary care physician. The simple answer: my health insurance is Medicare and Medicaid. Plus, I was new to the area.

When you do take your car to a mechanic, the mechanic tells you whatís wrong with it, what the options are for fixing it, and how much that would cost. He may tell you the best ways to drive and maintain it.

But he sure doesnít tell you what heís going to do and then tell you what to do in no uncertain terms. Can you imagine a mechanic saying, "Iím going to do a valve job and put you on 10-w-30 oil?" A doctor has no business doing it either. Keep looking until you find someone who listens and gives you suggestions, not orders. You, not your doctor, are in charge of your medical care.

But what if you were unconscious, like I was?

Now is also the time to legally designate someone you trust as your "health care proxy" ó a person who is legally empowered to speak for you when you canít speak for yourself. Many of us have such a person in our lives, but are often not related to them or legally married. Because they are not relatives, they might be prevented from even visiting you, let alone speaking for you.

Draw up a paper designating the person, and also stating your own strong feelings about treatment, such as prohibiting the use of certain medications or shock treatments. Get this done by a lawyer if you can afford it, but at least get it witnessed and signed by a notary.

Bottom line: Get all of this done now. I can hear the owl calling all of our names.


Barbara and Michael Knowlen have a website, Barrier Breakers, where Barbara puts up Social Securityís secret regulations in clear form, and from which she issues action alerts.

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