We Are The Enemy

Anesthesiologist trashes sedated patient — and it ends up costing her

Tom Jackman, Washington Post - June 23, 2015

(Via Eschaton)

I feel like this is another example of something disabled people encounter a lot from the medical profession … an underlying, mostly unstated belief that patients are the enemy.

We are stupid. We delude ourselves. We just want drugs. We crave attention. We whine and whimper and we should learn to suck it up. There’s always a “real story” we’re not telling. We lie.

I think this is part of medical culture, and it affects everyone. But disabled people experience it more often, because by definition we are harder to treat and figure out. It takes more effort to treat us, and almost nobody really likes having to work harder on the job. Plus, if our symptoms and complaints don’t match up with familiar patterns, it must be because we’re not telling things right, or maybe it’s all in our heads.

"The doctors then discussed “misleading and avoiding” the man after he awoke, and Shah reportedly told an assistant to convince the man that he had spoken with Shah and “you just don’t remember it.” Ingham suggested Shah receive an urgent “fake page” and said, “I’ve done the fake page before,” the complaint states. “Round and round we go. Wheel of annoying patients we go. Where it’ll land, nobody knows,” Ingham reportedly said."

I’m not saying that everyone in the medical profession thinks or acts the way the people in the article did. Most doctors and nurses are better than this, most of the time. But I think everyone in the profession recognizes the attitude. Other than outright greed, it is the medical profession’s principal dark side … seeing patients as obstacles or enemies to be overcome or outwitted.

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Doctors ... Just Relax!

Doctors' Ignorance Stands In The Way Of Care For The Disabled

Leana Wen, National Public Radio - May 17, 2014

"More than half of medical school deans report that their students aren't competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don't require clinicians to demonstrate knowledge or skills in treating patients with disabilities.”

So disabled people get measurably worse medical care because caring for us properly is too hard?

This reminds me of a circular argument we sometimes hear in public education. Classroom teachers often say that they shouldn’t be teaching significantly disabled students because they aren’t properly trained, like Special Ed. teachers are. Their belief is self-fulfilling. When a teacher decides that teaching disabled students it is beyond them, then they will, in fact, do a pretty poor job.

I think it’s the same with doctors. An ER doctor doesn’t have to know all about every disability to treat a disabled patient well. What they need, I think, is a little more confidence, an open mind, and really good listening skills.

The doctors cited in the article don’t believe they are “competent” to treat disabled patients. I would agree that many of them are insensitive and fearful of disabled people, but I don’t accept that broadly speaking they are incompetent. We are people, not internal combustion engines or integrated circuit boards. What doctors need is to realize how similar we are to other patients, not how different. They should be more confident, and not shy away from us just because we aren’t the norm.

The problem is that these doctors do end up treating us anyway especially in settings like the ER; someone’s got to. And when they do, as often as not, they are awkward, rushed, and unresponsive. They can do better, but because they don’t think they can, they don’t.

A bit more training in medical schools might help, but I don’t think it would take much. Instead of a whole course, what doctors need to hear is: “Relax! You are a fully qualified physician. Just do you thing, listen to your patient, and quit trying to pass the buck.

Hospital Memories

The last time I had surgery directly related to my disability was in early January, 1977. I’m pretty sure this is correct, because I distinctly remember watching Jimmy Carter’s Inauguration on a little black & white TV on a wall bracket in a room at the Montreal Children’s Hospital.

I had all of my disability-related surgeries at the Montreal Children’s Hospital. I don’t know if that’s because it’s where all complicated pediatric cases in Plattsburgh, New York were sent at that time, or because my father had done some of his pediatric internships there. Nowadays, people from our area go to Fletcher Allen Healthcare in Burlington, VT, or the Dartmouth-Hitchcock Medical Center in New Hampshire if they need specialist stuff, but back then, I think Montreal was the place.

I don’t know exactly how many surgeries I had there. When I was around 8 or 9 years old, I remember finding out that I’d had like 10 surgeries to that point, several of them when I was an infant or toddler. So I’ll take a guess that the total might be 11 or 12. Strange as it may seem, I don’t think I have a definitive record of my early medical history. I think for fun I’ll get in touch with the Montreal Children’s Hospital to see if they can send me any old records they might still have. I’m also kind of curious to visit the place again, sometime before they finish the new building in 2015.

Some things I remember about MCH and my experiences there:

- By far the best thing about my yearly checkups at MCH was that we would get lunch at McDonalds afterwards … something that just never happened with my parents back home.

- The dominant smell of the place was chicken soup.

- The night before my last procedure there … extensive spinal surgery … they prepped me at 5 AM. This meant that they washed and shaved by back and covered it with a sterile sheet. And there I lay in a kind of drafty, chilly hospital room. My father came in and saw this, got pissed off, and covered me with a blanket. This caused a minor uproar because it meant they had to wash my back all over again.

- That surgery was the first time I got a taste of addiction. I hated, hated needles at that age, but after a few days I got to where I literally counted the minutes until I could have another shot of whatever powerful pain medication they were giving me. I assume they did everything right because I never got truly addicted in a harmful way, but I do remember a distinct cycle of pain followed by relief that seemed to have more to it than the actual pains in my back.

- A woman who went to our church at that time recorded herself on cassette tapes reading “The Lion, The Witch, And The Wardrobe” for me to listen to while I was in the hospital. I still reread the Chronicles of Narnia every few years.

- While I was in surgery, my parents made friends with a woman who was waiting for her daughter who was also in surgery. They had come all the way from Jamaica for the operation. I remember the mother visiting my parents and me in my room, and I think maybe Mom and Dad went to see her and her daughter in her room, too.

- My mother stayed in Montreal most of the time I was in the hospital, at the apartment of a very good friend of my parents. The place was just a few blocks away from the hospital, so Mom would walk back and forth. I remember her telling me about walking back to the apartment through a blizzard, saying that it was both scary and beautiful at the same time. Snowstorms in Montreal are like that.

I can't say I have happy memories of MCH itself, but I have some happy memories indirectly related to it, connected with that time of my life and the people around me then.

• Wikipedia: Montreal Children’s Hospital