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STRIPEYSOCKS BLOG (not part of the book!)

Word of the day : Marginalised


WORD OF THE DAY : MARGINALISED

In the margin, stuck at the edge, ignored.

Someone mentioned that word on the phone and my brain grabbed at it, the elusive word I'd been seeking, as you do when rummaging through your word-store in a weary attempt to find the one that's got shoved under all the others, in a crumpled pile.

"And when she got there, the cupboard was bare." Quite. But here it is, the corner of it sticking out, waiting to be retrieved and headlined.

Earlier this year I got rather hooked on history programmes - the jockeyings for power at the Tudor court, the startling death of suffragette Emily Davison under the hooves at the Epsom Derby, the many ruthless attempts by an in-crowd to silence and marginalise those whose views, or knowledge, render them inconvenient, a noisesome presence, a general nuisance.

As I sorted images for this blog, in one of those spooky coincidences, there it was again, the word 'marginalised', directly over  my head as I stood for my photo at a Tymes Trust event. And I found myself, not for the first time, seriously questioning the motives of those who seem stuck with the view that people with ME, like Victorian children, should be seen and not heard, told what is good for them and expected not to contradict when a treatment makes them worse. That concept is out of the ark.

If the reality of the patient experience is not what a study concludes it should be, who's right? In what might be a good sign, even the British Medical Journal has begun addressing the need to give patients a voice. That's an improvement on what they wrote about me back in 1997.

So do the present in-crowd really believe they have the Truth, and everyone else is in error? Or is it just the usual Darwinian struggle to be uppermost? Nothing to do with the Truth, just who holds the monopoly of power?

How very base and unaltruistic that would be.