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What do we (patients) call ourselves? This is a deep subject that’s been debated a lot. (If I were Susannah Fox I’d toss in a dozen worthy links here:), but I’m short on time. Please add some in comments.)

There is indeed power in the words we use, because the people who hear them attach meaning to them, and as change unfolds, it’s important to distinguish between our words, the reality they represent, and all the different meanings different people intend and hear. SPM* member Fred Trotter has a weighty post this week, A Patient By Any Other Name. Here’s a comment I added.

Hey Fred – when I was in college in the Nixon years, my more radical friends often debated the power of language especially during a revolution. I’m no radical compared to them, nor to some of the more intense people I know in the patient movement, but I agree there’s something to it. Revolutions (race, gender, whatever) involve unshackling, and a lot of shackling lives in language.

I’ve always thought there are two changes in a social revolution: the underlying reality and the language we use to discuss life. There’s a period of intense discomfort during which the reality is shifting and the language no longer fits – just like a bad shoe. People start to see themselves (and others) in the new reality, and they say “That old language isn’t me, no sir!” Others say “It *is* me – I’m the NEW [whatever].” Some take over the old words, even the pejoratives, and take ownership in the new world, as some blacks have done with “nigger.” They assert that that signifies real power – “The Man no longer gets to say. We get to say. The language of your dominance no longer applies.”

I don’t mean to sound like an expert on this because I was no expert, just an observer. My point here is that we in the movement ought to be thinking about where we sit, collectively, on the timeline of transition. Many of us are awakening to our power, just as blacks and women did during their revolutions. Perhaps we should track both issues independently: the reality, and what we call it – AND what others hear when they hear our words. Because a social revolution’s not complete until the old meaning’s obsolete.

*For newcomers, SPM = Society for Participatory Medicine. This is the blog of the SPM; its journal is JoPM.


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