Monday, March 31, 2014

It's Not Only Justice Who's Blind

Okay, today I'm working off a riff, or I think that's what I'm doing - my ability to use cool slang is somewhat limited so I may just be planting my foot firmly in my mouth saying that. But I read a blog called Rolling Around In My Head and today's post included the following paragraph. It will probably make more sense if you read the entire post, so you can do that here.

"I know that I wish some people would allow people with disabilities the honour of having expertise in our own lives, having voices which need to have prominence in some areas and having vital information to add to any discussion about disability. Too often I see disability discussed as either a professional or parental concern. While those viewpoints are valuable, I don't disagree there, but they have to be tempered by and sometimes seen as secondary, and sometimes negated by the voices that speak from lived experience."
Cartoon by Kim

Reading this makes me think back to a conference for patients with a certain group of inherited neuromuscular diseases.  Experts in these diseases are booked as speakers. These are scientists who study the genetics in the lab, clinicians who see and treat patients, therapists, you get the drift.

A major complaint among patients is that the description of symptoms found in medical journals and textbooks is too limited. While descriptions used to be broader and more accurate, a few doctors with their own agendas have overwhelmed the field in the last 20 years. Their work has made it much more difficult to get a diagnosis, which is devastating to patients, because until you get a diagnosis you don't get treatment, and when you don't have treatment the disease slowly but progressively destroys your muscles.

At this particular conference an expert was standing before the audience expounding on his views. He is not a clinician, in other words he does not see patients or treat them. He studies muscle fibres removed from genetically engineered mice and draws his conclusions from what happens in a petri dish to a single muscle fibre.

He said, "Patients with (name of disease) have no problems with speech or swallowing."

The moderator stood up with her microphone and interrupted him. "Excuse me Dr. X. Did you say patients have no problems with speech and swallowing?"

He looked at her and said, "Yes, that's what I said."

She turned to the audience of perhaps 150 and asked, "Can I have a show of hands of patients with X who have problems with speech and swallowing?"

About 30 hands went up. She turned back to the speaker. "Dr. X," she said. "Are there any questions you'd like to ask these patients?"

He looked at her for a second before saying, "No," and continuing with his presentation.

Patients are not given the respect of having expertise in their own lives, of having vital information to add to the bank of knowledge about their own illness. We are too often told we cannot have this symptom or that one because the doctor says we don't. Progress is negated by "professionals" who not only have no physical experience with what they study, they refuse to listen to patients who do.

I think medicine has it wrong, at least in my field. It's justice which is supposed to be blind, not medicine.


Florence said...

That is so true! I have a genetic neuromuscular disease and have lost all patience with neurologists who know only what they read in journals. I have had them tell me things that I knew were not true. Fortunately, I now have a neurologist who takes notes when I tell him how I deal with various problems such as shoes and buttons and zippers and cooking when you can't walk.

Linda P. said...

As someone with an autoimmune illness, I more. I'm lucky, in a way, because my blood work confirms what I'm experiencing. A young woman down the street is not so lucky.

oklhdan said...

What an enlightening post. You are so right...medicine definitely shouldn't be blind. People with disabilities have to be speak up and make sure their voices are heard. Great post!