INSURRECTION ! part 1
From: Dawn (dawn@naisp.com)
Tue Nov 12 09:03:15 2002
Insurrection Part 1
I am now appalled. I am pretty sure I have lived through every indignity
a person with ARD and Endometriosis can endure.
It has recently occurred to me we have been bugging the wrong people,
our
doctors.
The grassroots campaign for awareness is great but it is not moving the
mountains we need moved.
I don't think we are going to get help from a national celebrity any
time soon. It
comes down to one of my families favorite retorts. You've got to pick
up an oar
and paddle your own canoe.
Well I think the time is right. God bless the internet we have finally
broken the
bond of isolation, found each other
and from each story on the quilt, the needless suffering and indignation
we put
up with must now fuel the fire.
It's the government we have to badger, the World health organization,
the CDC,
and Social Security and the likes.
If you live in another country don't think your two cent won't matter,
what
happens in the USA can certainly set a presedent for others to follow.
We need to look at our group and find the talent from within to
accomplish
goals that can change All our lives.
Are there any professional writers here? any people with legal back
grounds?
Medical professional? People willing to "jam" on the phone. People
willing to do
research. We are here to support each other. I can think of no better
way of
support
than banding together in an organized manner to get some important
thingsdone.
1. draft letters to our elected reps to let them know we are coming and
won't
keep quite till we get some help and answers. These letters should
include well
documented statistics, especially the economic ramifications
starting with financial devastation of families to the billions of
dollars spent on
medical care
2. draft letters to CDC and WHO ( a med. person can taylor it's format
so that
the docs feel like it is not from the lunatic fringe)
3. draft letters to social security to recognize these conditions as
diabling.
4. draft legislation to to address the lack of resources for our
global, pandemic
medical conditions. We deserve and demand research funding as our
numbers
surpass any other disease known. We need federal guidelines
for the medical community to follow, no more thinking we are crazy.
We will probably have to draft a bill ourselves with the help of one of
our
member with legalese. Yup paddling our own canoe, like when you fill
out all
the forms for your doc so he only has to sign for ssi ( If you have not
figured that
out it don't get done unless you do that)
5. continue our grassroots campaign of awareness and education.