Re: Be more than a statisic, be a pioneer! Leave your story on the Quilt
From: kann (stew@cowtown.net)
Mon Jan 20 20:56:44 2003
Dear Dawn,
Sorry to dig up bones, but the point was not if someone owns the story or
where it would end up--the point was I was NOT given permission to print
your
stories from the quilt page. So many women asked me to print their story
from the
quilt page, however, after my request for a release from Dr. Wiseman, it was
never
given. Instead, an argument ensued about ownership, rights, etc...and the
whole focus of our mission was lost in the argument! I would say someone
succeeded, but it was NOT the
ARD sufferer! Again, the material contained in that site BELONGS to
Synechion. Just want
everyone to understand that since you brought it up again. The only person I
received
a release from was Jo @ Bombobeach.com. I agree with you, I wish all the
stories
would saturate the world. I was TRYING to help get that word out, via YOUR
stories.
You are correct when you say, "no one can legally lift your story or email".
..I could NOT
even at the request of the women that so called "own" their story. They were
forced to
e mail me a new story or a story from their own e mail--I could not, with
their permission,
use their story from the quilt page! Now you tell me, when you say the site
offers
"protection" from 'that' ---who NEEDS this type of protection?????? Let's
keep it straight,
before we encourage women to add their stories.
Karen
-------Original Message-------
From: adhesions@adhesions.org
Date: Monday, January 20, 2003 08:25:19 AM
To: Multiple recipients of list ADHESIONS
Subject: Be more than a statisic, be a pioneer! Leave your story on the
Quilt
Dear fellow sufferer,
It is a time for hope and each story on the quilt is evidence that there
is a name, a family and a story behind some statistic.
It also helps us to help each other to know where you live and to know
your story. You have options to maintain your privacy. If you have the
ability to,, leave a picture as it is nice to put a face to a name.
I urge you all to place your story on the quilt. We are the lucky ones
who do not have to suffer in isolation as the gift of the internet has
brought us together.
I know alot of you pulled your story awhile ago but let me assure you
that
no one owns your intellectaul property. If you are told otherwise it's
bullpucky.
At this point who gives a carp if your story ends up on the front page
of the N.Y. Times, heck I wish mine would would. Only to put it to the
forefront of peoples attention. I digress as this site offers
protection from that. No one can legally lift your story or email.
There is hope on the horizion and our numbers do speak loudly. The more
the louder. Be a pioneer in this fight and place your story proudly for
all to see.
In the spirit of hope,
Dawn
--
--
I'm no doctor, just a fellow sufferer like you but I hope you consider me a
new friend.
.