-19-

                 WHAT AM I DOING HERE AND WHAT DO I DO NOW?

It is strange how much the Interenet has taken on a life of it's own. I had
thought of it only as a means of transfering information from one
geographical location to another.. as a tool.  I could see how learning to
use this system would be to my advantage, but from a purely academic
standpoint.  I had no idea of how this medium had been building its' own
communities, tying people togeather over vast distances of the globe with
the same ease of talking to the friend across town over the standard
telephone.

When I had first subscribed to CFS-L, a support list for people with
CFIDS/ME and those who cared about/ for us, I did not know what to expect
from it.  It had been several years since I had been able to attend support
group meetings in Victoria, and even when I was able to attend them I found
that I rarely felt any benefit from going.  What I was hoping for was to be
able to find out more about the disease, it's treatments, and about what
research was being done about it.

It was just like me to proceed full steam ahead with both feet firmly
planted upon thin air.  I was a "Newbie", not having mastered my online
email reader let alone having much of an idea about something as important
as "Netticate".  I was much too eager to join into something to just take
my time and "lurk", to watch and observe the daily ongoings of the list
before I made my presence known.

What I found here seemed to me to be a wealth of information on a wide
range of topics and interests around the basic issue of CFIDS.  There was a
topic for research, and another for medicine, one for matters of the list
itself, and still another for chat.  An open "OTHER" topic was for anything
that didn't fit under an established topic or one that the poster couldn't
figure out where it should go.  There were more topic headers than I could
keep straight and in my ignorance of how to use e-mail properly I had no
idea of how to go about changing the topic line on a posting. Since I had
seen other people being chasticed for posting under the wrong headers, and
having been chastised myself for it, I gave up on trying to post anything
new to the list.  But I did reply to other peoples' posts often, and with
great enthusiasm.

I found that people could talk about almost any topic they wished to on
CFS-L, with two important exceptions.  Talk about taking part in any sort
of activism for improving the lives of sufferers of the Da** Disease (as it
was dubbed on the list), especially political activism for promoting
research and social recognition of the severity and suffering produced by
it were activly discouraged by the listowner.  A second list at a different
listserver, CFIDS-L, was established by the CFS-L owner for activist talk
and all such matters were deflected to this list.

The second taboo topic soon became our own suffering.  If a person was in
crisis and reached out for understanding and sympathy the CFS-L was not the
place to reach out to.  Neither was discussion on how bad the disease could
really get.  No one was 'supposed' to die from CFIDS, and the majority of
those activily posting did not want to hear about anyone who had died.
They did not want to have any discussions on just how crippling the disease
could become.

It was a basic fear/denial reaction that I found exhibited amongst the
active members of CFS-L.  When a person is having a hard enough time coping
with their present level of disability, the last thing they want to have
put in front of their face is the reality that they too may get far sicker
than they already are. It is their worst nightmare being reveled as their
possible fate, so it is easier to turn a blind eye and deny it's existance.
While some people simply deleted the postings on the dark topics unread,
others demanded a stop to all the discussions on the grounds that they did
not want to read anything that was not hopeful and inspiring.

I was among those who were compairing notes on what the illness had done to
our bodies and how bad it could get.  We discussed the issue of contagion
and epidemics.  We discussed dispair and suicide arising from it.

We were jumpped on, harshly, by other posters of the group, and when anyone
cried out in our own defence *our* words were deemed to be the ones of
dissention, the "flames".  It was then the list moderators would step in
and chastise those who were critisized.  We could not talk of our fears or
pain or helplessness online, not on CFS-L.  Support was to be confined to
idle chatter, as long as it was not too lengthy or too much of it.  The
support of the embattered soul was not to be allowed. CFS-L was at this
time, in early 1996, the only newsgroup/e-mail list available to those on
the internet.  In my opinion, and that of many other's as well,  something
else was needed to fill our needs.


ADVOCACY AND CFIDS-L

I found that I naturally floated into issues of advocacy for the rights of
others and of myself.  In my pre-disability days I had taken part in
advocacy in many areas. As peer councelor at the University of Lethbridge I
worked for the benefit of adult students, and while at university I wrote
for the univerity newspaper and attending anti-nuclear and peace rallys.  i
had written numerous letters to both Federal and Provincial Government
members on many different issues, my words being used in the House of
Commons.  I  had worked for special needs education for both gifted and
handicapped students alike.  And I had worked for the preservation of
historic sites and heritage buildings.  On CFS-L I had learned of the
denial , disinformation, and discrimination that surrounded the public and
establishment attitudes towards CFIDS and its victims.  I was incenced by
it all.  If there was a forum that I could take part in to work on behalf
of my self and others, I was going to be part of it if I could.

CFIDS-L was supposed to be a place where information could be shared and
action discussed, planned and initiated.  "Supposed to" is the key phrase
here.  Discussions of advocacy matters were shifted to the empty CFIDS-L
from the message overflowing CFS-L, and discussions were picked up and
carried on there.  It didn't take long to discover that while talking about
advocacy and the need for it was encouraged, once again the taking of any
action was not.  Once again the listowner encouraged the listmembers to
take any actual doing to someplace outside of the list.  The list was for
activist talk, not activist action.


WECAN : World Electronic CFIDS/ME Advocacy Network

Taking the action off list was an idea that appealed to a group of
the CFIDS-L listmembers and CFS-L listmembers as well.  As disabled
individuals we had little to no power to do anything more than complain
about the sorry state of affairs the medical, research, and insurance
industry communities was in in regard to CFIDS and its victims.  In a
structured group we could speak with many voices, those with abilities in
one area combined with the abilities of others compensating for our person
degrees of disability and lacks of skills and mobility.  The computer was
the link among us, and it compensated for the distances between us and our
personal lack of mobility.

There was no organization in the realm of cyberspace upon which we could
draw upon as a template upon which to build an organized group of political
and social advocates. Several of us had decided that we wanted to be part
of an international advocacy organization that did more than just talk
about the problems.  We wanted to make things happen in the real world, and
we knew that we would have to invent things as we went along.

And so, the Worldwide Electronic CFIDS/ME Advocacy Network was given its
embryonic beginnings.  At first the group was called simply CFIDS/ME: NET,
and it was operated off of the home computer of Dr. Mary Schweitzer (Ph.D)
who volunteered to act as the temporary listserver for the yet less than
fledgling organization.  This ment alot of work for Mary as she had to
maintain the membership list and make sure that all messages sent to her
for the group were then forwarded along to all the members.  Luckally for
the group, Mary had some experience in this sort of thing as she was a
co-editor for a History list operating out of the University of Deleware.
But being that Mary was also disabled, it ment that the task would be a
formidable one in the long run.

Setting up of an international cyberspace organization had never been
successfully done before.  People with internet savy began to search the
reaches of the World Wide Web for information on rules and structures of
other international organizations only to discover that no one had been
able to pull one togeather.  In our attempt to not have to reinvent the
proverbial wheel it was discovered that we would indeed have to invent
things as we went along and that others would be watching to see if we
could in fact succeed where they had not.

Meanwhile we had pulled togeather a group of people from across the globe.
I was not the only Canadian amid the group, and while the bulk of members
came from across the continental United States we also had members joining
from the UK, the Netherlands, and Austrailia.  Eventually we would gain
members from New Zealand and South Africa  and other regions as well.
There were but three factors uniting us... we read/write English,  we have
e-mail access, and we or someone we love has the Da** Disease.  I don't
think that any of us had any real idea of what we were getting ourselves
into.

ORGANIZING AN ORGANIZATION

Although we had, as a group, the common goal of creating a working advocacy
group, we had no group focus of exactly what our group would be like or
exactly what we would be doing.  Defining our group was the first order of
business.  Most of the members had no intrest in taking part in the
structural organizational work, so a Steering Committee was formed and it's
composition agreed upon by the group.  While the Steering Committee was
charged with the task of defining the group's structure, the group itself
began it's work discussing and brainstorming issues and what could be done
about them.  Both Mary Schweitzer and myself were made members of the
Steering Committee (SC).

It soon became apparent as to why the other tries at forming an
international cyberspace organization had failed.  Just because people are
using a common language online does not mean that they all understand
each other. What is considered as common useage in one area has an obscure
meaning somewhere else.  Political systems suffer similarily, and it is
truly amazing how many variations there are under the heading of Democracy.
Terms may vary from region to region on any aspect of organizational
structure and what is a "Charter" in one area is a "Constitution" in
another and a "Statement of Purpose" in a third and "By-Laws" in a fourth.
Arguements soon arose as to what was needed: a Statement of Purpose, a
Constitution, a Charter, or merely a set of By-Laws.  Arguements arose as
to how a concensus would be reached for adopting anything and everything.
One group wished for discussions and fine tunings until a concensus was
reached, with ratification by the full membership.  Another group wanted a
simple 51% majority by the SC to be presented to the membership as a done
deal.  A third group wanted a simple majority in the SC to be ratified by a
majority of the membership to be established by the membership.  Chaos was
often the result, and civility broke down into insults and bullying
behaviors. As a result half of the Steering Committee resigned, a few
taking their had feelings and personal resentments to the public forums of
CFIDS-L and CFS-L in an attempt to discredit and destroy that which they
could not control.

Some work was accomplished in spite of the chaos.  Committees were formed
and discussions were ongoing amongst the general membership, and Mary did
her best to keep track of the growing membership and number of posts being
received and sent out daily.  The membership was asked to vote on a basic
Statement of Purpose for the organization and for an organizational name.
Many names were suggested and discussed.  A list of options was set out and
voted upon.  Hence WECAN was born, and the motto of the organization of
"Togeather, WE-CAN."


We had a name, a statement of purpose, a motto, and a web page. All was not
well, but we had an organization.  We had so far done what no one else had
managed to do, and we had much more work to be done.


And in the process of helping found an organization to help better the
lives of PWC's everywhere, I got my life back again. I made friends who
would listen to my pain and my tears, who would not abandon me when the
going got tough.  I became empowered again by the act of doing and being
part of doing something that had not been done before. I was no longer the
leftovers of a life that was, I was now an active part of lives being
lived.  It felt good to be alive and part of a community again, a community
who's trust and love was something I had never been part of before.