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Doctors, Our Concerns Really Matter!

By Barbara “Bobbi” Linn

People with disabilities nowadays are realizing how important an anesthesiologist is to our well-being. These days, most of us know individuals who have experienced serious complications after the use of anesthesia. Often, the issue is how to get the anesthesiologist to deal with us.

About a year ago, I had surgery for a broken hip. My nephew Adam, a part- time deputy sheriff, came to the hospital dressed in full uniform. We had hoped that the sight of his uniform might give us some greater sway in speaking with the anesthesiologist.

Before being put to sleep, I wanted to tell the doctor, a woman, about issues pertaining to my cerebral palsy, its premature aging effects and my related drug sensitivity. My nephew has a friend who is the chief anesthesiologist at a nearby hospital, and Adam had already discussed my medical history, especially my drug sensitivity, with him.

When Adam called him the evening I fell, that doctor made some recommendations about which medications should be used during my operation. But when my nephew and I tried to mention his recommendations to my doctor, another anesthesiologist, she refused to talk to us. She waved us away and then walked away from the gurney I was on.

So I went into surgery not in the best frame of mind. The doctor who had just dismissed us without a second thought had no way of knowing that in 2003 I almost died from a combination of medications that interacted in a strange way. I spent 10 days in intensive care, had pneumonia twice, left the intensive care unit with none of my muscles working, and required a stomach tube to obtain nourishment for the next year.

I didn’t want anything like that to ever happen again, yet here I was putting my life in the hands of someone not even willing to take the time to listen to my set of unique circumstances. What gall! Or was it ignorance? I was already prepped for the surgery, I needed the operation, and once again I found myself without any options. I glanced at my nephew, who, like me, seemed very angry.

Then my gurney was pushed through the doors marked “Only Medical Personnel.” In the operating room, I was transferred to the table, and I started falling sleep, thinking of the many medical horror stories I’ve heard over the years.

One of them concerned my friend whose kidneys ceased functioning after surgery. (This was the first time I had learned of a possible relationship between cerebral palsy and anesthesia. Someone in the national office of United Cerebral Palsy went back through its records and discovered that there were three or four similar cases that were reported to the organization.)

Another horror story concerned another woman, a community activist, who had post-polio syndrome and needed an appendectomy. After surgery, she developed a mysterious cough and died within two weeks. I remember falling asleep hoping I wouldn’t wake up more disabled than I already was.

Having been part of the disability community for more than 50 years, I am acutely aware of the many tragic tales that my peers have had, and continue to endure, at the hands of the medical community. Unfortunately, most of these narratives never get written up in journals to inform other doctors, leaving the doctors who seek this knowledge unaware and ill-prepared.

Not much is taught about us in medical school, and this needs to change. Before any surgery, assume that the doctor is not aware of everything pertaining to your individual disabilities, and make it your business to inform him or her. If there is a medical school near where you live, try to contact someone connected with it and ask if arrangements can be made so that you can speak to a class there about disability.

Hearing some of our medical stories might lead to greater awareness. I believe that the more the medical community interacts with people who have disabilities, the better health care we will receive.

Barbara “Bobbi” Linn has played a leadership role in the disability rights movement since the early 1970s. She founded Bronx Independent Living Services and assisted in the creation of the New York State Independent Living Council.

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