what follows is a primal
scream expressing despair at the /state/ of our community
and our charities [not the writer or any forum
members or any members of the m.e. community].
and four things that i think we can do to jump out of that state to make progress.
a personal opinion that exorcism will fix you could also be
published, and it would be just a personal opinion, and i
think it would do less harm, because it would be at least
different from society's grasp of the disease.
that's not hyperbole. exorcism would more likely be
dismissed as loopy than pep talks.
what i have seen is depressing to be shown in a charity at
all. this is regress.
a few years ago, our community reached a new stage, moyer 2,
and can move forward into big things. we need to or we will
all -- all of us -- die before we get human rights as a
population.
we are all in the same boat politically even if we have
separate diseases, and even with misdiagnosed
diseases.
it feels like we are slipping back. we can see
this in fear of boldness, in skirmishy resurrection of
infights we thought were dead, in thinking small, and in a
general mood of depression. this is dangerous.
there are things we can do.
first, we can move characterization from tweaks to symptoms into emphasizing that it's a disease. a serious one. just like hiv/aids, ms, and sle, which are also ordinary serious diseases. [eta: i do not mean mea tagline or anything like that here. see link.]
the entire experience of the disease
does not match its typical characterization.
please note that i did not say definition. i said
characterization. they are not the same. [eta: i need to link to my recent post and externally on this here.]
we try jumping out of this local minimum, and end up right
back in it. OF COURSE we do. it's all the same thing to
our audiences. our jumps are too tiny.
we are not conveying the point that it is an entire disease,
but instead confusingly focusing on a few symptoms that
do not convey in the slightest what the disease is
/capable/ of doing to its victims.
second, we need to convey our outrageously compelling history.
want narrative? we got narrative! we fight establishments.
third, we need BIG things to move forward. small faithful
steps is the bread and butter. but /aiming/
to big things and less fear.
it feels like we are still getting some of our charities
on board with the basics of the basics, just like in
the many long years before we got a tiny bit of traction in one spot....
... which is slipping, partly because some of our charities seem to lack
ambition, determination, willingness to listen,
and a clear sense of where we need to get to.
when they are not going off in fashionably unproductive directions, they
are reinforcing mischaracterizations.
alem? individual. wilshire et al.? mostly individuals. meaction
at least provides a framework for individuals to pitch in.
the us's mass. assoc. also. and more.
but charities, oh !@#$ the disclaimers. i really don't
think a lot of our major charities are where they need to be.
i don't have it in me to do disclaimers.
this would not get written if i tried.
fourth and finally, we -- and charities -- can take [legal / regulatory / traditional media articles / blog comment] action EVEN IF seemingly unhinged imbeciles could try to use us FIGHTING BACK as a tiny part of an enormous attack on us [that would occur anyway].
take the hill! i forgive those who get cherry picked for speaking logic strategically. fight that with more logic.
[eta: i do not mean social media here. i mean legal / regulatory and more.]
fighting back is a POSITIVE! we are lying on the ground and
refusing to get up. we are that boxer who started crying.
understandable as both mass human rights violations and
boxing are brutal. but not strategically useful.
what perpetrators fear is us gaining power. our democratic rights are plenty powerful. we can and should use them! [eta: i do not mean social media here, especially not twitter. i mean legal / regulatory / various official and semi-official channels, trad media, and maybe blogs.
[i am not going to comment here about social media or meaction's no-oxygen tactic [which idk enough about] as it's too much of a distraction here.]
maybe i should stop there. but here is a picked cherry. again my concern is the state of our charities. not the writer.
> With a chronic illness you can either get bitter or you
> can get better.
no doubt it was not meant like this, but this /sounds like/:
"if you don't master your m.e., it will master you. sophia
failed to master her m.e. emily collingridge, who started
out mild, failed to master her m.e. casey fero at age 6
failed to master m.e. if only they had gone to the retreat
in india the beatles went to.
"
what things /sound like/ does matter in a major charity,
even if not meant.
i can forgive mistakes by charities that do good. i have done so many
times.
but i think we need to get out of this particular local minimum
by the time mcevedy and beard roll around. [eta: if you read that as sardonicism you would not be wrong.]
eta:
local minimum means, like, imagine you are in a landscape with peaks and valleys. you want to find a low point (say, to get to a river that will take you to civilization). so you go down. but you are in a high valley. meandering around will get you noplace.
tiny tweaks, which ignore the big picture, allow audiences to roll you back down to the high valley. no audience will have the imagination to know that there is a big picture, because you do not tell them. they do not notice your tiny jumps.
.
