1:16pm April 13, 2013

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“I was asked ‘if I understood the gravity of my condition.’ Yes, I said, I am well aware of the implications.”

Bill Peace’s story is told in full elsewhere, an essay about the severe wound he had in 2010 and in particular one experience he had late one night, an event that he says has “haunted him”. Here are some excerpts:

The doctor, wrote Peace, “grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.

“This litany of disaster is all too familiar to me and others with a disability. The scenario laid out happens with shocking regularity to paralyzed people.

“The hospitalist went on to tell me I was on powerful antibiotics that could cause significant organ damage. My kidneys or liver could fail at any time. He wanted me to know that MRSA was a life-threatening infection particularly because my wound was open, deep, and grossly infected. Many paralyzed people die from such a wound.

“His next words were unforgettable. The choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics.

“If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort at all. Although not explicitly stated, the message was loud and clear: I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a lifetime in bed.

“I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live.

“I never told anyone about what transpired. Not my family, friends, the nurses I saw for over a year when I was bedbound. I did not tell anyone for a very good reason: I was scared. Terrified really. A physician, a person who is highly educated, and I would hope free of any bias, considered my life not worth living. Disability was a fate worse than death. It was the ultimate insult.

“People with a disability do not write about fear, we feel it I am sure, but few delve into how deadly cultural assumptions can be.”

”

Bill Peace

In this case, even antibiotics can be a treatment disabled people are pressured to reject. Notice how, as with most of my doctors, the doctors tried to avoid the word death. They just talked about making him comfortable. This one conversation chills him to the bone. I had multiple conversations like that every day for days in a row about my feeding tube. This stuff happens all the time. Disabled people die from it all the time.

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