What is an activist ?
There is much talk about the meaning of ME Advocacy and Activism at the moment from the likes of John Herd and Hillary Johnson . Their message is simple : we have lost the plot.
I am not sure, though, we ever had it. If the big ME organizations have become so corrupted, if people's idea of advocacy is posting messages to and from each other on the internet, if oh, so viciously, so cleverly attacking every decent person who stands up and tries to make a difference, is taken to be acting politically, then we deserve what we have got.
Who let the big ME organizations get so lazy and corrupt ? Who so lost sight of reality that they think that any of our postings make a button of difference ? Who has let the vicious fringe wreck so much destruction ?
My wife has been severely ill for the last 16 years. In all that time I have seen chance after chance squandered, attacked, rubbished . I have seen the psychiatric lobby run rampage with their crazy theories, that should never have been allowed to grow legs, they are so weak and insubstantial.
The ME Community , had it got its act together, should have had no trouble whatsoever blowing the psychiatric lobby out of the water, years ago !!!
If it had the first idea about activism that is.
But clearly it did not , so here we are : lives wrecked, untold , ongoing suffering and a whole bunch of lists and groups that frankly don't matter a damn.
Is this is all we have to show for all those years of effort ?
I am not sure, though, we ever had it. If the big ME organizations have become so corrupted, if people's idea of advocacy is posting messages to and from each other on the internet, if oh, so viciously, so cleverly attacking every decent person who stands up and tries to make a difference, is taken to be acting politically, then we deserve what we have got.
Who let the big ME organizations get so lazy and corrupt ? Who so lost sight of reality that they think that any of our postings make a button of difference ? Who has let the vicious fringe wreck so much destruction ?
My wife has been severely ill for the last 16 years. In all that time I have seen chance after chance squandered, attacked, rubbished . I have seen the psychiatric lobby run rampage with their crazy theories, that should never have been allowed to grow legs, they are so weak and insubstantial.
The ME Community , had it got its act together, should have had no trouble whatsoever blowing the psychiatric lobby out of the water, years ago !!!
If it had the first idea about activism that is.
But clearly it did not , so here we are : lives wrecked, untold , ongoing suffering and a whole bunch of lists and groups that frankly don't matter a damn.
Is this is all we have to show for all those years of effort ?
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