Daily Archives: October 10, 2005

Diary post:working

Today was a good day. I started out in a lot of pain but it dissipated quickly. I was able to cook three healthy meals, and I could sit up in bed and get to my paperwork, bills mostly, some human rights work, the upcoming UTLA Human Rights Committee Conference and my own web page. Leon worked on the yard and Andy spread out papers in the living room and worked on his projects. I was able to get away for a massage in the afternoon. I’m still working on things.. It’s wonderful to be able to get work done.


Daily indignities: Circular firing squads

-a log of obstacles, impediments and injustices in the course of a life of disability.

this is my first “daily indignity” post on this blog. i have stories to write and tell, but this is fresh, and occurred yesterday. the ones from days before the blog will have to wait. most of the daily indignities will have to do with outright discrimination against the disabled. inaccessible events, unjust policies, violations of my human rights. this one comes from an activist list for those suffering from a condition known as chronic fatigue syndrome, to which i posted my introductory letter. many consider the two illnesses, fibromyalgia and cfs to be one and the same, at least in a majority of patients. at the very least, one might assume that those suffering from a disease so similar and struggling with the same obstacles would want to share a certain solidarity with others in a similar situation.


yesterday i received the following email from the moderator of the group. now, understand, hardly anyone posts to this group and this was my first post. here’s my welcome message:

——– Original Message ——–
Subject: post for CFIDSME-Activist
Date: Mon, 10 Oct 2005 01:48:25 +0000
From: maryslists@______________
To: emmarosenthal@earthlink.net

Hi Emma – sorry I haven’t been on line for a bit. All new members are moderated because we had a lot of trouble with spams a while back. And I should have picked up new messages but have been busy with other things (and time is limited …)

This is mainly a list for CFS/ME (which is not fibro) – but I found it interesting you chose Frida because another friend of mine who is on a feeding tube with CFS/ME is a great fan of Frida’s, and knows the same history you mention.

If you could shorten that reference to your blog to just a few paragraphs, instead of such a long post, it would be okay to send to the list.



I responded:

——– Original Message ——–
Subject: Re: post for CFIDSME-Activist
Date: Sun, 09 Oct 2005 19:27:44 -0700
From: Emma Rosenthal
Reply-To: emmarosenthal@earthlink.net
Organization: earthlink
To: maryslists@________________

if the reason for moderating mail was to avoid spam, then not posting my
email does not fit that criteria and should be posted without editorial
interference. cfs and fibro are basically the same illness. cfs is
marked by fatigue, fibro, by pain. 80% of all people with either have
both. i am in that category. i fit the criteria for both illnesses.
furthermore, as orphan illnesses, cfs, fibro, and a host of other health
issues might be of interest to members of this list, as activists who
might want to build alliances and connections around points of mutual
concern. i could add “cfs” to my piece if it please you, but won’t
shorten it. that’s ridiculous. if this venue is so picky, it isn’t the
right one for me. it isn’t as if you get a lot of posts!!!!! since july
you’ve had only 14 posts. only one this month. you might want to
encourage participation, not discourage it. it reminds me of stupid
feminist arguments over who shaves their legs and who doesn’t, or the
old riddle:

how do feminists (in this case, cfs lists leaders) form a firing squad?

answer: in a circle.

post the article or unsubscribe me.



some time later, not having received a response, i checked to see if perhaps i had been unsubscribed. i have not. but i did take the time to reread the description of the list. (it’s a yahoo list.)

and i wrote back to the list moderator:

——– Original Message ——–
Subject: Re: post for CFIDSME-Activist
Date: Mon, 10 Oct 2005
From: Emma Rosenthal
Reply-To: emmarosenthal@earthlink.net
Organization: earthlink
To: maryslists@______________


The description of your list states:

“The CFIDSME-Activist has been created as an opportunity to discuss activism with relation to the illness known as M.E. (Myalgic Encephalomyelitis or Encephalopathy); CFS (Chronic Fatigue Syndrome), CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), or most recently for those who test positive for the RNaseL defect, R.E.D.D. (RNaseL Enzyme Dysfunction Disease), as well as the allied illness Fibromyalgia… (emphasis mine)”

so where exactly did i go wrong and how is your censorship of my post conducive to dialogue between activists? my letter and my blog, specifically address the relation of activism to these illnesses. the responses i got from those who were allowed access to it, on other lists, was very powerful. i seem to be speaking to something people want to hear.

on the other hand. i have no interest in participating in a forum where one person decides for the group without their input, what is and is not, beyond protecting the list from spam, appropriate activism and analysis.

as i stated in my previous communication, post my letter, or unsubscribe me.