Doctors, Our Concerns Really Matter!
By Barbara Bobbi
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 didnt 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 Ive 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 wouldnt 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
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.