From an email newsletter.
first the standard of care question, then a general point,
then what i'd most like #meaction to do.
1. standard of care
regarding effective, adequate, etc. care:
the who constitution and later documents hold that humans
have a fundamental right to [paraphrase] the highest attainable standard of health without discrimination.
for what it is worth, this is law. in addition, it is, unusually, non-derogable, which means something like "you can't !@$# with it".
therefore, for #meaction documents i would suggest considering the standard of care language of un factsheet 31 or general comment 14 as a coordinated strategy with an explicit human rights model. m.e. politics is fundamentally a human rights issue.
imo these documents need the additional context of misopathy -- an attack on our population -- to say why the work of the
charity is profoundly needed and urgent.
meaction has expressed new potential leanings toward a few
models and communities. i have not seen this outlined more precisely, but perhaps i just couldn't find it. email got no response.
this potentially matters for standard of care.
i strongly oppose the social model of disability for m.e.
for health reasons i cannot defend this point atm. it would be disturbing if meaction leans toward it. i don't know if it does or not.
thus, just in case, i need to emphasize that standard of care and similar topics should always reflect that we are:
1) profoundly disabled (we're all in agreement here)
2) impaired (de-emphasized in fashionable disability discourse)
3) and ALSO have a disease process (ignored in
fashionable disability discourse)
4) and ALSO that our population is being systematically
attacked, globally, as such (disability discourse does
not sufficiently take this on board as such)
m.e. needs are a SUPERSET of disability discourse.
some of disability discourse is extremely regressive. in some
cases even distorted toward the perpetrators, and that is not always noticed by observers.
a disability activist is or was famous for saying: "My disability comes not from the fact that I’m unable to walk but from the presence
of stairs". that is practically the most famous disability
quote ever. try that on whitney dafoe.
in contrast, for standard of care, we need
1) a /biomedical/ model, not de-emphasized, not ignored
2) human rights, in the tradition of human rights
3) services for our populations, not
de-emphasizing or ignoring bedridden and housebound
4) accommodations for our populations -- including
but not limited to intolerances
THEREFORE, while collaborating with the disability community
can be good, imo we need to emphasize our needs -- and the
concepts of /biomedical disease/ and misopathy -- EXPLICITLY, or
they WILL be sidelined in basically all discourse.
imo there is direct conflict between social model and our needs.
article 25 of the disability convention might be usable as a reference for standard of care. we are profoundly disabled. there might be more there that is useful for meaction if it is not covered in the previous documents.
2. general point
in a negotiating context, minimum needs are problematic
as an opening volley. our perception is already too low,
then the demands get bargained down even more.
more generally, it can be dangerous to think in terms of
changes from status quo. overton and stockolm are
some of our enemies. i prefer starting fresh with a correct
understanding of the disease and standard of care.
this might cover it
http://thekafkapandemic.blogspot.fr/2015/11/make-it-unthinkable-please.html
3. what i want meaction to do
i want meaction to initiate and support bold
legal action, including but not limited to criminal charges.
i view meaction as the only charity that can really do this at this time.
===
meaction can aim higher than many charities. this is one of the reasons i support it. to me, we will not succeed until we aim higher.
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@Wilhelmina Jenkins @JaimeS .
[does meaction have an account?]
thanks for reading.
p.s. the linked pages mention inclusion. a lot of us, including myself, are limited in talking, cannot talk, cannot deal with webinars/chats/voice chats, have sleep or geography issues, etc. is bluejeans as inclusive as email or even forum?
[edited]