Holding a Multi-City Demonstration: A Sleep-In at Major Intersections Around the U.S.

[Rrrr]

Holding a Multi-City Demonstration: A Sleep-In at Major Intersections Around the US, and at CDC and NIH parking lot exits. (And other cities around the globe?)
______

If I were not too sick to organize this, and not too wrapped up in my own daily survival, this is the demonstration i'd like to pull off

I think we could make a big stink with this plan and get a lot of media attention.

We only need 5-10 people per city: Boston, NYC, San Fran, Wash DC, Chicago AND the CDC and NIH parking lot exits. (And other cities around the globe?)

On the same day, in each city, at evening rush hour (4-5 pm), we do a sit in (lie in) at a major intersection, all of us wearing our nightgowns and pajamas and we bring sleeping bags and pillows and lie down. How could the news media resist this? We don't move until the threat of arrest is real--then we move. We have on hand the Disability Law Centers and other such institutions ready to assist us legally if any of us do get arrested.

We have signs and hand outs that say "The next HIV epidemic is happening now. US Gov't: Do XMRV studies now! Fund CFS research now!"

All we need are 5-10 people per city, per major intersection.

Of course we call the media in advance. They shoot/film the whole thing and it makes it on the 6 pm news. But we also shoot it ourselves, too, and post on YouTube.

rrrr

 

[Sing]

Brilliant!

 

[BEG]

Rrrr, Please not this summer. Too o o o hot. I know the perfect place in my city. I'll have to join the people who are asking for donations, however. Perhaps they'll wear pajamas.

 

[Rrrr]

bumping this thread to encourage more feedback on this idea...

 

[taniaaust1]

Ive thought of such a thing myself in the past (when i was soo peaved off as i couldnt get disability allowance for a long time).

"The next HIV epidemic is happening now"

I personally think we need to be careful about what we put out there as if we did a huge protest over the XMRV and it didnt end up panning out well for us, (eg if it turned out it was in a lot of different illnesses and we just carried it cause we were more susceptable but it wasnt found to be the cause of our symptoms), we may make it seem like we caused a big thing over nothing and then who is going to believe us next time. (like a boy who cried woof).

I'd rather protest over something we have proof about.

Im all for protesting thou over the CDC lack of funding into CFS, no one can deny that's happened. Not sure about timing thou right at this moment as right now they are for once doing the right thing and looking into an illness which has to do with CFS... and the NIH holding a postive study which it will be putting out real soon. Not sure about turning ourselves into like bad guys right at this moment.

 

[Rrrr]

thanks for yr input!!

i wonder about timing, too, but i'm thinking that now is JUST the right time to put pressure on, so we can get clinical trials going asap. usually they can take months or years to get going. we want to fast track things. we've waited long enough (me: 20 yrs)

 

[Dreambirdie]

i wonder about timing, too, but i'm thinking that now is JUST the right time to put pressure on, so we can get clinical trials going asap. usually they can take months or years to get going. we want to fast track things. we've waited long enough (me: 20 yrs)

Me 33 years.

I love your spirit Rrrr. You are a woman after my own heart.
I have no energy to participate, but cheer you on. :victory::victory::victory:

 

[Rrrr]

yeah, it is my own lack of energy and daily crisis after crisis state taht keeps me from doing more advocacy, too.

 

[Daffodil]

i once read a suicide note of a CFS+FM patient...from eons ago. she begged people to do something like this.....break down the doors of the gov't bldgs...throw our blood at them if we have to...to get noticed.

 

[dannybex]

Well intentioned, but...

Holding a Multi-City Demonstration: A Sleep-In at Major Intersections Around the US, and at CDC and NIH parking lot exits. (And other cities around the globe?)
______

If I were not too sick to organize this, and not too wrapped up in my own daily survival, this is the demonstration i'd like to pull off

I think we could make a big stink with this plan and get a lot of media attention.

We only need 5-10 people per city: Boston, NYC, San Fran, Wash DC, Chicago AND the CDC and NIH parking lot exits. (And other cities around the globe?)

On the same day, in each city, at evening rush hour (4-5 pm), we do a sit in (lie in) at a major intersection, all of us wearing our nightgowns and pajamas and we bring sleeping bags and pillows and lie down. How could the news media resist this? We don't move until the threat of arrest is real--then we move. We have on hand the Disability Law Centers and other such institutions ready to assist us legally if any of us do get arrested.

We have signs and hand outs that say "The next HIV epidemic is happening now. US Gov't: Do XMRV studies now! Fund CFS research now!"

All we need are 5-10 people per city, per major intersection.

Of course we call the media in advance. They shoot/film the whole thing and it makes it on the 6 pm news. But we also shoot it ourselves, too, and post on YouTube.

rrrr

Hi Rrr,

I know you're well intentioned, but I think this would backfire big-time, especially if it's done at 'major intersections' during rush hour.

We just had a similar situation happen here in Seattle a couple of days ago.

Some people got together, got the permits to protest about the immigration issues in the news. They had permits to hold a protest on federal property, with signs and all, but then nearing the end of their protest, about 2 dozen people decided to walk out onto a major intersection downtown, and block traffic -- to get more attention.

They certainly did. Negative attention. Blocking a major downtown street at rush hour (and on a day when there was a major league baseball game that evening) caused traffic to back up for 3 HOURS, bus routes got all screwed up -- way behind schedule, leaving people stranded waiting for their bus rides home after a long day at work...and news reports, and comments on the news stories locally showed that for the most part all that did was PISS PEOPLE OFF.

I'm sure you'll agree we definitely don't want to do that. :Retro smile:

Here's some links to that story...check out the comments...people weren't very happy, to say the least. And we're such a 'polite' city!

http://www.katu.com/news/97044454.html

This comment from a reader brings up good points:

"Peaceful protesters? They moved from a legal rally in the plaza to a blockade in the streets. Didn't matter one iota to them who that may have harmed. What about the guy on his way to dialysis? What about the child waiting at school for mom to pick her up. What about EMS trying to reach the lady having a heart attack. I'm all for peaceful rallies. Not trapping people and forcing them to listen to your demands."

I think ideally we need to copy organizations like the Susan G Komen Foundation, that gets permits for these 'walks' all over the country, and then has healthy people -- and also cancer survivors -- walking for those who can't.

Best,

Dan

 

[Tuha]

Hi,

I am not from U.S. but I definitely think that this is a great idea. If we would manage it also in Europe - I would participate - I would even drive some houndred kilometers to get to the city with this demonstration. i think, this is the best possibility how to make us visible. We say that in U.S is one milion CFS patients but noone see us. I know that a lot of us are really sick - I am also most of the time at home but still able to get somewhere and to stay there for some hours - in tent even some days.
yes, some protests can be taken also negativ but its always better negativ attention like no attention. but in this case I think it can be mostly possitive, it can shock the people to see some really sick people traying to improve their situation. and we need to make people understand that there is a sickness like this with no attention.
just how to organise this? do you have some ideas how to start?

 

[Rrrr]

hi dan,

yeah, i, too, was thinking about these things.

i don't think walks do the trick tho (e.g. breast cancer walks). they take soooo much work and time to organize, they really don't bring media attention and they don't have a sense of urgency, which is what i feel we have to impart at this time.

however, that said, i did think that it could be dangerous to block traffic, both for the folks in cars who have to get to dialysis appts, and to the protesters, who could get punched in the face by a ticked off driver forced to stop for our demo.

so i had another thought: we don't block traffic completely, we just put our cot/blanket/pillows and IV stands in a cordened off section smack dab in the middle of a major intersection. cars can still get by, but at a slow crawl pace, just like when passing an car crash/accident. we pass out a one pager to each car that goes by. this would work best if we only have a few protesters, so we don't take up too much space. additional protesters could be at all 4 corners of the intersection.

thanks for the feed back, everyone. keep it coming!

 

[Rrrr]

Hi,

I am not from U.S. but I definitely think that this is a great idea. If we would manage it also in Europe - I would participate - I would even drive some houndred kilometers to get to the city with this demonstration. i think, this is the best possibility how to make us visible. We say that in U.S is one milion CFS patients but noone see us. I know that a lot of us are really sick - I am also most of the time at home but still able to get somewhere and to stay there for some hours - in tent even some days.
yes, some protests can be taken also negativ but its always better negativ attention like no attention. but in this case I think it can be mostly possitive, it can shock the people to see some really sick people traying to improve their situation. and we need to make people understand that there is a sickness like this with no attention.
just how to organise this? do you have some ideas how to start?

Tuha,

Thanks for yr post and input. Let's see if we can get more comments first, before we try to organizing anything. That way, we can hear all the ways this could backfire on us (like the post from Dan). I think it really important to hear these comments.

And I think someone should contact some Act Up organizers and see what they say. Does anyone know any? (They certainly did lots of things that gave them bad press (thowing condum around inside a church during Sunday worship). But they got things done: i.e. fast trials and drug approval, from what i hear.)

 

[justinreilly]

Hi Rrr,

I know you're well intentioned, but I think this would backfire big-time, especially if it's done at 'major intersections' during rush hour.

We just had a similar situation happen here in Seattle a couple of days ago.

Some people got together, got the permits to protest about the immigration issues in the news. They had permits to hold a protest on federal property, with signs and all, but then nearing the end of their protest, about 2 dozen people decided to walk out onto a major intersection downtown, and block traffic -- to get more attention.

They certainly did. Negative attention. Blocking a major downtown street at rush hour (and on a day when there was a major league baseball game that evening) caused traffic to back up for 3 HOURS, bus routes got all screwed up -- way behind schedule, leaving people stranded waiting for their bus rides home after a long day at work...and news reports, and comments on the news stories locally showed that for the most part all that did was PISS PEOPLE OFF.

I'm sure you'll agree we definitely don't want to do that. :Retro smile:

Here's some links to that story...check out the comments...people weren't very happy, to say the least. And we're such a 'polite' city!

http://www.katu.com/news/97044454.html

This comment from a reader brings up good points:

"Peaceful protesters? They moved from a legal rally in the plaza to a blockade in the streets. Didn't matter one iota to them who that may have harmed. What about the guy on his way to dialysis? What about the child waiting at school for mom to pick her up. What about EMS trying to reach the lady having a heart attack. I'm all for peaceful rallies. Not trapping people and forcing them to listen to your demands."

I think ideally we need to copy organizations like the Susan G Komen Foundation, that gets permits for these 'walks' all over the country, and then has healthy people -- and also cancer survivors -- walking for those who can't.

Best,

Dan

On second thought I agree Dan. And I think it would also be too dangerous for people- we could get him with cars.

do like the idea of nih and cdc blocking the parking lot exits or some sort of uppity protest at nih and cdc. i think the main thing is to get on the news. get the media there. costumes work well for this, if anyone has any ideas- maybe dress up as a marching band for And the Band Played On or dress as scary viruses. signs saying 'left for dead' 'silence = a living death' or whatever. get us causing a commotion on the news and then leave when they give us the last warning before getting arrested.

if we can find people in/near atlanta and bethesda with ME willing to do it, maybe we can pass the hat and raise a token amount of money to give them- say $10 or $20 each or whatever we can raise and is appropriate. this seems better than people traveling long distances and getting PEM over this.

Or, if we wanted to focus on XMRV we could just go to the biggest blood banks in our cities to protest.

another idea-
I think t-shirts for people in the front row and testifying at the next cfsac that say 'ME/XAND: SILENCE = A LIVING DEATH' or whatever slogan. they could be day glo blue - as blue is the color of the ME ribbon.

feedback?

 

[Sing]

What about a different location for the protest? By Red Cross offices or a statue of Florence Nightingale or some other relevant historical figure? In a park by such a statue--Symbolism is very important for such communication--

 

[Rrrr]

On second thought I agree Dan. And I think it would also be too dangerous for people- we could get him with cars.

do like the idea of nih and cdc blocking the parking lot exits or some sort of uppity protest at nih and cdc. i think the main thing is to get on the news. get the media there. costumes work well for this, if anyone has any ideas- maybe dress up as a marching band for And the Band Played On or dress as scary viruses. signs saying 'left for dead' 'silence = a living death' or whatever. get us causing a commotion on the news and then leave when they give us the last warning before getting arrested.

if we can find people in/near atlanta and bethesda with ME willing to do it, maybe we can pass the hat and raise a token amount of money to give them- say $10 or $20 each or whatever we can raise and is appropriate. this seems better than people traveling long distances and getting PEM over this.

Or, if we wanted to focus on XMRV we could just go to the biggest blood banks in our cities to protest.

another idea-
I think t-shirts for people in the front row and testifying at the next cfsac that say 'ME/XAND: SILENCE = A LIVING DEATH' or whatever slogan. they could be day glo blue - as blue is the color of the ME ribbon.

feedback?

i love the of the teeshirts at the next cfsac meeting! (but not sure who it would impact, as the audience is not really where the cameras are trained, right?)

dressing up like a virus or in our pajamas, i think, is great for getting attention. wherever we do it, it has to be a populated place. it can't just be nih or cdc, it has to be nih and cdc AND somewhere else, where the media can easily come and where lots of people stop to notice us. like a busy intersection or mall, or something. if we don't stop traffic, we could still stand on the corners and cause a scene. again, the media will only come if we give them a reason to come. just going to a park won't do it. it has to be that we make waves somewhere. red cross offices is an idea to consider... if we focus on xmrv.

 

[citybug]

I'm all for the lie-in ideas. But I don't think it has to be big or coordinated. Just a few people outside NIH buildings or government in squares anytime. I wanted to do it myself May 12 and haven't been able to so far. Ideally I would go to union sq with signs Research XMRV and lie down or sit at table and collect donations for wpi. Would get friend to make short video clip. We could get a bunch of them strung together for a youtube video. I say anytime anywhere. Who knows what attracts news.

Doing it anytime will raise awareness. Don't think it backfires. People don't say you can't raise money for cancer, you said you were going to find a cure 10 years ago. It's a great time now--you don't know about xmrv because we need to research it -so many groups it could effect (lyme gw autism)

CFSAC is supposed to be at same time as XMRV conference (not open to patients), one in DC one in Bethesda? If some people get to DC i'd like to see some small protest at least. go to cfsac then hold signs rush hour of govt workers leaving building somewhere. we could give donations for a van. if only there is someone interested who is able to travel.

Last fall cfsac had those great green tshirts, who made those? Also we could have big XMRV buttons. I was thinking about them for fundraising, but have to pay alot. A good design could be posted and we could print on labels and stick on top of another button for ourselves.

When news came out i wanted to be in halloween parade. dress as virus or dr mikovits. oh, lab coats at cfsac conf. plus more testimony why aren't there clinical trials for retrovirals.

 

[SaraM]

How about car stickers for raising awareness? Just an idea.

 

[Ever Hopeful]

I think everybody needs to throw an idea in - here's mine. How about a coordinated effort at 2 of the major news stations (CNN and ABC?) where a video is mailed with XMRV and ME info and everyone mails the news stations a pillowcase with how many years they have been sick and bullet points of what they have lost written in black permanent ink. You could sign it or not. The post office has those ready to go new boxes that would be easy to use. A black fine point Sharpie pen and a worn-out pillowcase make a cheap, easy and effective message to bombard a news station. If everyone did it to arrive within several days of each other and sent it to the same news editor, it might have an effect with very little effort on our part. If we could get several other ME sites to join in, so much the better. We could also have each of us include a letter with our individual story stapled to our individual pillowcase. The video mailed to the targeted news editor could be the Phoenix Rising forum youtube video - that was cool. We could ask as a group for media attention.

What do you guys think??

 

[Ever Hopeful]

How about we nominate Judy M, Annette W and Hillary Johnson for CNN's Hero award?? Make it a triple award.

We could make a t-shirt with their faces across the back with a saying on the front "Ask me who my heroes are?"