Demonstration at the CDC

[jimbob]

Preliminary plans are in the works for a demonstration in front of the CDC building for early May. Anyone interested in participating can P.M. me. Also need to know if your spouse will be accompaning you. I know a lot of you just can't do it, but hopefully we can still round up a decent number for it to be effective. If we get enough people, there will be more details to follow concerning signage, theme, permits, date etc.

 

[alex3619]

How about a list of people who would like to be there but cant, like a visitors book or something? Then you can say: these are all the people who would like to be here but cant!

 

[RivkaRivka]

this is very exciting!!!!!!

plus, i have an idea of how to expand the numbers, jimbob, in case people with ME/CFS are too sick to attend themselves. this is my idea below. we have a few of these happening around the country in april and may. i'll pm you. let's talk.

Updated Jan 21, 2011

Proposed Dramatic Public Action

"Invisible No More: I Represent"
Creator: Rivka -- Rivka (at) ThatTakesOvaries (dot) org

One idea is to try to get a whole high school or college drama class to undertake this project. Another idea is to not use a school group and instead use people from the community (either actors or non-actors).

In a public action/demonstration/street-performance, each drama student or actor or community person (this person is herein called the "Representative") represents, and has a short monologue written by, one ME/CFS patient who is too weak and too sick to demonstrate on his/her own behalf. The Representative would be volunteering, we hope, and not paid.

In advance of the action, each Representative receives the short monologue and an additional one pager on the background of their character. This additional one pager describes the real-life character they are playing, i.e. the ME/CFS patient's demographical information and his/her health condition, including symptoms and length of illness and any other information that the patient thinks is important to relay. If the real-life patient wishes, s/he can include contact information, so the Representative can get more information and have background questions answered.

For the one-hour action/demonstration/street-performance in front of the public sidewalk venue (perhaps a hospital, a city hall, a federal health center, blood donation center, wherever), the Representative *is* the person with ME/CFS. So when any public or press asks the Representative questions, the Representative speaks as that person with ME/CFS, just as Living History actors do at historical educational sites, like Plymouth Plantation or Gettysburg.

Each Representative comes to the venue wearing pajamas, nightgown or sleep gear, with a sleeping bag or mat and pillow. The Representative lays down with a sign next to them that says: "Invisible No More: I represent [name here]. Sick xx years with ME/CFS."

One at a time, Representative gets up off the ground to dramatize or dramatically read the monologue that s/he has chosen (either memorized or with script in hand).

All events must include:
- A handout titled "Invisible No More" that we give them. It will explain the illness, our needs/demands and the action.
- Each actor has large sign that says, "Invisible No More: I represent [name here]. Sick xx years with ME/CFS."
- Encouraged: wheelchairs, canes, IV poles.

 

[alex3619]

RivkaRivka, that is a really good idea. Maybe we can expand this to a whole world wide arts and drama movement! Have you seen the ME/CFS art gallery on Second Life? Bye, alex

 

[eric_s]

Preliminary plans are in the works for a demonstration in front of the CDC building for early May. Anyone interested in participating can P.M. me. Also need to know if your spouse will be accompaning you. I know a lot of you just can't do it, but hopefully we can still round up a decent number for it to be effective. If we get enough people, there will be more details to follow concerning signage, theme, permits, date etc.

Great idea. Unfortunately it's too far away for me, but please, whoever is able to, GO!!!

If you need donations to help with this, i will donate, as far as it's possible for me, which is not much. But this would be a way for people all around the world who can't attend to help.

Try to get the maximum media impact possible.

And i like the idea of the guest book or something similar. One or two weeks ago i had the idea for a letter campaign with real, paper letters that would be phyisically delivered by PWCs, instead of sending emails or faxes. This could be a chance to do that, if the organisers think it's a good idea. People from all over the USA and even all over the world if that makes sense, who can't attend because of the distance, could send a letter with photo etc. and those letters could then be piled up in front of the CDCs door.

 

[WillowTree]

Although I have been following the forums for quite some time, I only recently registered to become an official member. This is actully my first post. I felt the need to reply as I believe the above are all very good creative suggestions. We have talked about the need for ACTION for quite some time now. The momentum is growing and we need to keep these issues before the public and the governmental agencies. I believe these are the beginings of some very good ideas, and they certainly have my interest. I do not live in the Atlanta area, and due to illness (homebound and unable to travel), I would not be able to physically be there. I CERTAINLY, HOWEVER, WANT TO HAVE SOME PART TO PLAY IN THIS. I want to be represented and participate in whatever way is made available to us through the organizers' plans. Please keep developing this and keep us informed of your progress. You have my interest and support. I hope to someday soon stand with you and participate in this campaign in whatever ways are made available to us homebound folks. Thanks to all you creative and organizational people out there. You have my gratitute.

Yes We Can!

 

[LaurelW]

What WillowTree said. Me too!

 

[eric_s]

Welcome WillowTree! There are many ways in which you can help, great to have you here. Also try to bring more people with ME/CFS you might know to this forum and/or encourage them to participate in efforts to move our cause forward. We need everyone.

 

[Nielk]

this is very exciting!!!!!!

plus, i have an idea of how to expand the numbers, jimbob, in case people with ME/CFS are too sick to attend themselves. this is my idea below. we have a few of these happening around the country in april and may. i'll pm you. let's talk.

Updated Jan 21, 2011

Proposed Dramatic Public Action

"Invisible No More: I Represent"
Creator: Rivka -- Rivka (at) ThatTakesOvaries (dot) org

One idea is to try to get a whole high school or college drama class to undertake this project. Another idea is to not use a school group and instead use people from the community (either actors or non-actors).

In a public action/demonstration/street-performance, each drama student or actor or community person (this person is herein called the "Representative") represents, and has a short monologue written by, one ME/CFS patient who is too weak and too sick to demonstrate on his/her own behalf. The Representative would be volunteering, we hope, and not paid.

In advance of the action, each Representative receives the short monologue and an additional one pager on the background of their character. This additional one pager describes the real-life character they are playing, i.e. the ME/CFS patient's demographical information and his/her health condition, including symptoms and length of illness and any other information that the patient thinks is important to relay. If the real-life patient wishes, s/he can include contact information, so the Representative can get more information and have background questions answered.

For the one-hour action/demonstration/street-performance in front of the public sidewalk venue (perhaps a hospital, a city hall, a federal health center, blood donation center, wherever), the Representative *is* the person with ME/CFS. So when any public or press asks the Representative questions, the Representative speaks as that person with ME/CFS, just as Living History actors do at historical educational sites, like Plymouth Plantation or Gettysburg.

Each Representative comes to the venue wearing pajamas, nightgown or sleep gear, with a sleeping bag or mat and pillow. The Representative lays down with a sign next to them that says: "Invisible No More: I represent [name here]. Sick xx years with ME/CFS."

One at a time, Representative gets up off the ground to dramatize or dramatically read the monologue that s/he has chosen (either memorized or with script in hand).

All events must include:
- A handout titled "Invisible No More" that we give them. It will explain the illness, our needs/demands and the action.
- Each actor has large sign that says, "Invisible No More: I represent [name here]. Sick xx years with ME/CFS."
- Encouraged: wheelchairs, canes, IV poles.

RivkaRivka:

You have great ideas! i think it would have a major impact but, how can we actualize it?
How would we find a group like that?
I'm sure they would want compensation for their time and effort.

If you can make this happen, I would gladly contribute financially.
Maybe each person who is represented can pay for their one representative and if they can't afford it some people can pay extra to cover that cost.

I'm too sick to organize or go myself but i would surely contribute to the cost.

 

[Cloud]

In my small rural area alone there are several private schools of theater. This one has been around for many years: http://www.dellarte.com/ These groups are always doing free community events for charitable causes. I've seen em do it many times for environmental causes. We also have kids groups from the elementary and high schools who do the same kind of community events. We also have all the Drama majors from the local Uni often volunteering their creativity for the good of the community. Many of these groups do these events for free if it's for a good cause. Plus they get to do what they love....act.

Ok, so all that is a bit over the top....still we all know someone in our personal lives who care enough to play the parts. I think Rivka's idea is very doable. Great idea for a group of people mostly unable to show up for ourselves.

 

[Tammie]

I'd definitely like to be there, but am way too sick and far too broke

 

[justinreilly]

Thanks for organizing this! we need to really raise hell if we are going to get any help and this is a great step in a positive direction!!

I think, for cost-effectivenss, it would be good to try to contact/ rally up people local to Atlanta to get out there who normally wouldn't (they would have much lower travel costs in terms of money and PEM). Maybe this is obvious, but i think we could get people out by contacting any Atlanta-area support groups.

We could get people to contribute cash for stipends for local people to encourage them to get out and protest- $20 or $30 or whatever works, given to each local participant. I would contribute $200 if someone who will be, or ideally is, in Atlanta could organize this (i'm not the ideal person since i'm not near Atlanta and can't travel to Atlanta- though i will organize the preparation if someone who will be there can do the on-site stuff and they don't want to/ can't do the prep). I've never contributed money to an ME cause, but i think we can really get a big bang for our buck with this.

 

[eric_s]

Me too, i'm willing to pay for travel costs for people willing but unable to participate for financial reasons. I can't do this for more than a couple of people, but i'm sure, i'm not the only one.

 

[Roy S]

Posse Up! The more the merrier.

There was a demonstration there in 1991 by a group called the Go Girls.

 

[Cloud]

Great ideas to contact the local support and advocacy groups. Also, contact the "Atlanta Unfiltered" paper. They'd be all in for this story. I'm in Calif...long way from Atlanta, but I'd make it happen if this got huge and had I more time for planning the trip.

 

[SpecialK82]

Personally, I must say, I don't understand the timing of this demonstration when Unger has invited PANDORA to speak with them. Shouldn't we wait for the outcome of the meeting to decide for sure if there should be a demonstration?

In the likely chance that the results of the meeting are not as we would hope, then by all means a demonstration would be fantastic!! But if this meeting can be productive and fruitful, and really move us forward in a new partnership with the CDC - and I think that we should settle for nothing less - then let's reward them when they do right and ask how we can help them - and let's protest when they do wrong (again).

 

[justinreilly]

Personally, I must say, I don't understand the timing of this demonstration when Unger has invited PANDORA to speak with them. Shouldn't we wait for the outcome of the meeting to decide for sure if there should be a demonstration?

In the likely chance that the results of the meeting are not as we would hope, then by all means a demonstration would be fantastic!! But if this meeting can be productive and fruitful, and really move us forward in a new partnership with the CDC - and I think that we should settle for nothing less - then let's reward them when they do right and ask how we can help them - and let's protest when they do wrong (again).

If the demonstration occurred some day before the meeting, i don't think the fact that she agreed to meet means we shouldn't protest. This seems to me to be quite likely a string em along tactic, given the long history of CDC malfeasance and nonfeasance. If she was really committed to doing the right thing she would have already made progress revamping the program; for example getting rid of Reeves def. what new light is a meeting going to shed on the reeves def? none. she's scheduling the meeting for march, then maybe she will postpone it. the meeting will happen and she'll take things under advisement and go talk to the boss about what she can do and so on.

In litigation we say the best way to get a good settlement is to prepare for trial. If you say to yourself they seem willing to talk and then don't move the litigation forward, you have no leverage to force a settlement. The ONLY reason she is meeting with us is that she is feeling the pressure. We need to keep uping the pressure to force her into REAL action.

When she takes actual action we can consider then whether to give her a temporary reprieve by scaling down the pressure.

 

[Cort]

Justin's right I think. Pressure is a wonderful thing - which is why I think it was so clever to get all those groups together; they presented a voice that was difficult to ignore.....A real protest could work wonders. Surely there are many people with CFS in Atlanta.....

This is why we need local groups and addresses of people in cities that we can contact. Let's build a network of groups!

 

[ukxmrv]

I think that a demo would be a great complement to go with the meeting. The meeting would be boosted by it and taken even more seriously.

 

[cfidsurfer]

A demonstration is a great idea. Count me and my entire family in.