Peggy Munson blog: A call for radical activism ACT-UP style

[RivkaRivka]

Peggy Munson blog: A call for radical activism ACT-UP style

PEGGY WRITES:

Hi friends,

I whipped out another quick blog post about XMRV -- this time a call for radical activism ACT-UP style -- PLEASE POST TO FACEBOOK, PHOENIX RISING, LYMENET, ETC. SO IT GETS AROUND. If I ever feel better (ha) I have specific ideas for further actions in addition to those already being done:

http://peggymunson.blogspot.com/2010/10/best-offense-is-good-offense-what-we.html

"The best offense is a good offense: what we need to learn from AIDS"

According to the <http://cfsuntied.com/blog2/2010/10/07/be-vewy-vewy-quiet-im-hunting-wabbits/>CFS Untied blog, the CFIDS Association of America just proudly touted an “advocacy” style for ME/CFS that consists of “using one’s inside voice”:

The president of the CFIDS Association of America said that she heard the announcer on National Public Radio state that "we use our inside voices to bring you the news." She likened that to the "inside voice" of the CAA as they pursue their activities of stimulating research, reporting on the success of their grantees, and sharing information about upcoming events and important publications.

A quarter of a decade into the crippling epidemic of ME/CFS, we have yet to learn what AIDS activists taught us about inside voices or, more generally, about interiority from the perspective of men who had come out of the closet only to be faced with social ostracism and Kaposi’s sarcoma. Those activists didn’t use inside voices unless they were watching a live performance of Angels in America. They shouted, marched, and threw blood. And this is what worked.

<http://peggymunson.blogspot.com/2010/10/best-offense-is-good-offense-what-we.html>
Read more

 

[RivkaRivka]

moderators, can you change the title from "Z" to "A"??? -- thanks!

 

[WestOzGirl]

If diplomacy always worked then we wouldn't have the issues we have in Iraq and Afghanistan.
There are times that require "acting-up" and fighting for what is right, that time is NOW!!!
We are people sick with a retrovirus and in need of medical help ASAP!!!

 

[caledonia]

Great - now that we're all on the same page - how can bedridden people ACT-UP?

 

[WestOzGirl]

To begin with we can ACT-UP, either ourselves and/or our supporters, by writing to & telephoning our: local state and federal politicians, relevant government health departments, healthcare professionals, friends, family and the strangers in the street. We need to inform them of the latest research/news.

 

[mezombie]

Lie-In, anybody?

Maybe we could coordinate with a few local peeps, grab a sleeping bag or comforter and pillow and lie down in public space.

It doesn't have to take place in Washington, DC. Local demos also have an impact. How about targeting your nearest federal office building? Or your state capitol? Or someplace heavily trafficed where such an action would definitely be a nuisance?

Get the action videotaped or, better yet, figure out where your local press will be and show up there.

Let's start thinking outside the box and adapt ACT UP tactics to our own abilities!

 

[PeggyMunson]

Hi Everyone --
Please feel free to post any concrete ideas on my blog in the comments section. I will compile suggestions that come in.

Remember these words from Vito Russo for ACT-UP in 1988:

"In a lot of ways, AIDS activists are like those doctors out there -- they're so busy putting out fires and taking care of people on respirators, that they don't have the time to take care of all the sick people. We're so busy putting out fires right now, that we don't have the time to talk to each other and strategize and plan for the next wave, and the next day, and next month and the next week and the next year.

And, we're going to have to find the time to do that in the next few months. And, we have to commit ourselves to doing that. And then, after we kick the shit out of this disease, we're all going to be alive to kick the shit out of this system, so that this never happens again." -- VITO RUSSO

 

[PeggyMunson]

Also, someone informed me people were having trouble posting comments on my blog -- I think it's fixed now, as I changed the settings for anonymous comments.

http://peggymunson.blogspot.com/2010/10/best-offense-is-good-offense-what-we.html

 

[WestOzGirl]

Peggy great idea!!!
So we need to decide what we are going to do, set a date, spread the word and then ACT-UP!!
We need people to help co-ordinate this.
Maybe call it a "LIE-IN", "LIE-DOWN", "BED-IN"?
For those who wont be able to make it to any public place we could set up a website so people can log on and have a virtual "LIE-IN".
Friends, ME/CFSers, everyone lend me your ideas

 

[aruschima]

An open letter to the world

I posted this also on other boards.

I think it would be very helpful in the moment to find an united voice world wide, develop a pamphlet and translated into as many languages as possible which can be used for any occasion, send to news papers, friends, government, health officials and so forth.

I like to ask everyone to contribute with idea, formulate what we all feel, experience , want and what needs to be done.

I need help to edit, spell and grammar check and finalize this draft. It would be great everyone jumps in with ideas and can contribute to editing, translation, and distribution. (My English is really not good enough so editing and grammar/spell check and any idea concerning improvement of the the content, is welcome)


I formed a group on google and anyone who is willing to work on this text can PM me and i will place the text on my documents board, where we can edit from there together.

Draft , not ready to send out yet !

An open letter to the world

ME/CFS destroys lives

We live with pain, muscle weakness, bone crushing physical exhaustion, mental fatigue, cognitive difficulties, insomnia, partial paralysis, headaches, just to name a few of the symptoms, on daily bases. Many of us are home or bed bound for years.
We loose our jobs, our businesses, our savings, our homes.
We face discrimination and alienation from friends, family and society, due to misinformation.
Our children loose years of education at best, at worst, forced through inappropriate school systems, deteriorate until bedridden.
Lives are lost.


It is morally and ethically wrong to withhold aid from sick people
It is morally and ethically wrong to deny research, validation and treatment to sick people.
It is morally and ethically wrong to deny financial aid to sick mothers, fathers and children.
It is morally and ethically wrong to deny children recognition, aid and an education with suits their special needs.
It is morally and ethically wrong to ridicule, discriminate, and estrange you from family and society with miss information
It is morally and ethically wrong to remove very sick children from their parents and force them in to psychiatric care and treatments, which have worsen their condition and leave children traumatized for the rest of their lives.

And yet, this is exactly what has been done to us!

The consequences are severe, the losses indescribable, suffering unimaginable.


Thousands, if not millions, all over the globe are the victims of ME/CFS and of governments who failed to respond in an ethically/morally just way, to a disease which has been known for over 25 years!

For over 25 years health institutions all over the world tried to tell us and the world ME/CFS is in the mind, denied us validation, denied research and possible treatment, denied us financial support and denied us dignity.

No longer we want to suffer in silence


We, ME/CFS sufferers demand an end to the discrimination of ME/CFS world wide.

We demand from health institutions and governments around globe to end discrimination, validate ME/CFS as a serious and debilitating neuro-immune disease which is potentially infectious.
We demand immediate funds made available to facilitate research, trials and treatments for ME/CFS, especially further research and clinical trials of XMRV/MLV-related retro viruses, a newly discovered HIV-like retro virus associated with ME/CFS.
We demand from governments all over the world to facilitate immediate financial aid to all ME/CFS sufferers!
Create and facilitate special needs education for children diagnosed with ME/CFS
We demand Governments world wide to take immediate action to protect possible further contamination of the blood supply! Bann all ME/CFS sufferers from blood donation. ( By not doing so, you are an accomplice to life long torture of living with ME/CFS, or other diseases, which are maybe associated with XMRV/MVL-related viruses! )

We want our dignity back!

ME/CFS sufferers globally


Aruschima

 

[aruschima]

There was a lot of discussions going on the net on how to advocate . Many expressed the need for a more aggressive approach to our activism. I have said this already months back and agree whole heartedly with such an approach.
But this letter is just stating facts; why , for what and how we want things to move.

Actually this letter is not meant as a campaign itself, it should be more a part of many campaigns going on in the moment. It is about finding a united voice globally , a pamphlet which can be used as additional info at a demo, or mail to governments , mail to family members or news agencies, and so forth. Translated into many languages we will find a united voice !

I would like to see some kind of consensus for what and why we are "active" , but what kind of "actions" will take place is up to every campaign/er itself.

Aruschima

 

[aruschima]

It is also about saving energy ........

 

[Recovery Soon]

Maybe we could coordinate with a few local peeps, grab a sleeping bag or comforter and pillow and lie down in public space.

It doesn't have to take place in Washington, DC. Local demos also have an impact. How about targeting your nearest federal office building? Or your state capitol? Or someplace heavily trafficed where such an action would definitely be a nuisance?

Get the action videotaped or, better yet, figure out where your local press will be and show up there.

Let's start thinking outside the box and adapt ACT UP tactics to our own abilities!

That's a great idea. If you want attention that'll get it.

 

[kdeneris]

I posted the following comment to Peggy Munson's blog:

Peggy, thank you so much for speaking for so many of us who want to see ACT UP style advocacy. We do have a critical window of opportunity to influence our government, because of the connection established between XMRV and ME/CFS.

I have been ill seven years. I could (and probably would) relapse severely after taking certain types of political action, as well as their possible, legal consequences. But I would hope for the best and take the chance, if I thought I was involved in a well-thought out, committed campaign to end our government's abuse and neglect of patients with ME/CFS.

None of us want to be any sicker, but isn't that exactly what we will be if we can't change our government's mind about how easy and profitable it is to ignore us?

I also believe that we need to make ourselves visible. So I am in favor of not only lying down, but chaining ourselves in place. Preferably to hospital beds we have rented for the occasion. It's much too easy to haul people away before they can have the press conference, otherwise. (Maybe there are logistically easier ways to make ourselves visible; but this is surely the most comfortable.)

Yes, we have to get help and support from family members and friends, whenever possible. I'm sure mine will come and bail me out, if necessary.

Kim Deneris

 

[Tuha]

I think we have to be more visible. sending emails, calling are also good but the best way how to be visible is demonstration. So I would propose 2 possibilities. the first one - try to organise some demonstrations as often as possible with most people possible. or the second possibility - you make like a constant protest. for example if we would be able to find 50 people ready for a demonstration - they would take their tents and they would put their in front of an important state building and they would do daily demonstration - so it means - every day would stay I dont know 2-3 people (it depends on how many people we would find) in front of the state building with their tents and next day other 2-3 volunteers would change them - like this you can inform more people about our problem. I also think that this second possibility would be also more efficace with our case because a lot of us are too tired to make a demonstration so we will never get big numbers - at least not on the beggining. to organise something like this worldwide in most cities possible would be great.
I also think we need to shock the public. now if the people hear about for example HIV, cancer - they are shocked but if they here about CFS they are laughing. I already saw some shocking videos on youtube about really sick cfs patients - to show it to the public would be great

 

[urbantravels]

Sometimes I visualize a big march of our friends and families, while we stay home in bed. They can carry signs with pictures of us, and signs depicting "gravestones", for instance:

Urbantravels, Beloved daughter, sister and friend

Alive and participating in the world: 1968-2009
Disabled among the "living dead" of CFS: 2009-?

Kind of morbid, eh?

Maybe not the gravestone thing exactly. Maybe it should be something much rowdier than a funeral march. But I think our absence from the actual protest could be a powerful statement, and our able-bodied loved ones and friends could do a lot of yelling and screaming and jumping up and down on our behalf.

 

[kdeneris]

Sometimes I visualize a big march of our friends and families, while we stay home in bed. They can carry signs with pictures of us, and signs depicting "gravestones", for instance:

Urbantravels, Beloved daughter, sister and friend

Alive and participating in the world: 1968-2009
Disabled among the "living dead" of CFS: 2009-?

Kind of morbid, eh?

Maybe not the gravestone thing exactly. Maybe it should be something much rowdier than a funeral march. But I think our absence from the actual protest could be a powerful statement, and our able-bodied loved ones and friends could do a lot of yelling and screaming and jumping up and down on our behalf.

Well, morbidity is exactly the point we want to make. I'm not sure it's possible to be too morbid, we have lost our former lives and identities to this disease.

We could dress up like zombies to illustrate our "Night of the Living Dead" existence...and so could our friends and family. Another advantage of costuming: if you don't want someone to know that's you protesting, getting arrested, or whatever, they won't provided you have enough makeup on.

I do like the idea of a funeral march from which we will be pointedly absent, except for our pictures. And good family and friends who might yell and scream and jump up and down, and we could stay home and watch them on the news.

Kim

 

[boomer]

I really believe that it will get to the point that Canadians will have to march in the streets of cities and some will have to lay down on Parliament Hill and march with signs. Only problem is that it gets awfully cold on Parliament Hill in January. I couldn't see that kind of thing happening until the spring. I honestly believe nothing will happen before that.

Isn't there an international cfs meeting in Ottawa in September? I notice the hotel booked is only a couple of blocks from Parliament Hill. That could be a good time to raise awareness in Canada.

 

[kdeneris]

I really believe that it will get to the point that Canadians will have to march in the streets of cities and some will have to lay down on Parliament Hill and march with signs. Only problem is that it gets awfully cold on Parliament Hill in January. I couldn't see that kind of thing happening until the spring. I honestly believe nothing will happen before that.

Isn't there an international cfs meeting in Ottawa in September? I notice the hotel booked is only a couple of blocks from Parliament Hill. That could be a good time to raise awareness in Canada.

And it takes time to plan something impressive. And to organize everyone to participate. Do you know more about the meeting?

Kim

 

[aruschima]

i have one idea which i keep turning around in my head, not yet really thought out yet, but here it is. We could choose one day for an action world wide. We mail by post to all major news agencies CNN, BBC and so forth an envelope, which contains a paper with colored, red-blood like color sheet . A note attached which explains that is symbolizes () blood of ME/CFS patients, infected with XMRV . The whole information similar on what i wrote in a letter to the world attached to it. Of course it has to be a flood of letters arriving at the same time , at different locations ans stations to get it in the news.

By the way, i see no reaction to my letter, why not ? Not good ? Want suggestions and people who want to work on it and translations !

Aruschima