ACT UP documentary, United in Anger, 2012

You may recall when ME Action Network started there were mentions of ACT UP. This was the campaign in the 1980s by the LGBT community to get more research into AIDS (mainly in the US)

There was a documentary made around 2012 called United in Anger and it's available on YouTube.

https://www.youtube.com/watch?v=MrAzU79PBVM

The programme is interesting as it looks at what worked & what didn't. Obviously there are similarities and big differnces between the AIDS/HIV cause and ours.

It's 1 hour 33 minutes long (I watched it in small chunks)

 

Additionally some interesting graphics are featured in the programme. The website below features some of the graphics

https://www.icp.org/browse/archive/collections/aids-graphics-selections

 

Was David Tuller involved in ACT UP?

 

There's another good docu on ACT UP and AIDS activism: how to survive a plague by David France (he also wrote a detailed book about it).

https://www.youtube.com/watch?v=3eaAKnNGUPs

There's this one scene which I found very impressive: Peter Staley's speech at the International Aids Conference in 1990. He was mostly speaking to scientists but he got them to stand up and chant: "300.000 deads from AIDS where is George" [the president George Bush, who decided not to come to the meeting]. After which Staley said: "You can all now consider yourself members of ACT UP." (minute 56).

The thing I found interesting in ACT UP is that they had different groups within the organization that specialized in a subject- one group was focused on the science (they would later split and form TAG), another on media exposure or prevention etc. That really helped to be more efficient I suppose.

Jennifer Brea did an interesting interview with Staley on the best tactics for ME/CFS advocacy organizations. He said that we have to use our most powerful statistic. In the case of AIDS that was the number of people who've died, in the case of ME/CFS it's the number afflicted by the illness, which is quite large in comparison to other diseases. And he saw the size of our online community as our most powerful weapon. I agree with that. It's one of the reasons why I think the tactic of silencing a bad article such as the Kelland/Reuters one isn't the right strategy. Making noise on social media is what we're good at.
https://www.meaction.net/tools/case-studies/how-to-survive-a-plague/peter-staley-transcript/

I would also like to know more about your background in AIDS activism if it's ok to talk about that. Would be interesting to hear how you compare AIDS activism with ME/CFS activism, whether there are things the ME/CFS community can learn from AIDS activism or whether there were mistakes that we should watch out not to repeat etc. @dave30th

 

I too would love to learn more about that, if it's ok.

 

I'm inclined to think that the most impactful statistic would be a comparison of Quality of Life to other illnesses.

 

And a question I wish I had the answer to is: The people of ACT UP did naughty things to get the message out there. They misbehaved. My question is how did these acts get framed in the press at the time? And did it have any negative impact or if mixed did it tilt toward a more positive result?

 

The total impact of quality of life x the number of people affected is just mind-boggling. It's like an entire mid-sized country locked up in solitary confinement for unspecified something that nobody cares to fix. Staggeringly stupid waste of human potential, especially given average onset is basically early 20's.

Once the bean counters get a hold of the cost of doing nothing there will be a head rush kind of "we done fucked up" realization. Eventually. Some time in the future.

 

As a variant on the number of people affected, how about phrasing it along the lines of "Every hour x number of babies are born who will go on to develop ME in their lifetime. All will suffer devastating impacts on their home, work and social lives, and only a small percentage can expect to recover.". Be as dramatic in the language as the currently available stats will allow.

 

To see that history repeats itself over and over again is always hurting me, although it is never suprising. We need to unite with all the other discriminated diseases and we should tackle this discrimination against sick people once and for all.

The Aids movement had so much power - it is incredible. So much wouldn't be possible today, e.g. due to censorship of open speech. (E.g. calling someone names like "conspiracist", "leftist", "right", "antivaxxer", "fake news" etc is a form of censorship in my view.) People that say "we fight against the system" or "people with Aids are living in the street - this is what the establishment wants, this is not by mistake" would be called "conspiracists". Statements like "You kill us" or correlating a name and its face with "murderer", and also things like the demonstration against the catholic church, would be viewed as too aggressive etc. Also, would the media be interested today? Besides the fact that pwME cannot bring these "impulses" due to the disease...

And maybe it's not the time anymore for that kind of action - there's always a right time. Who knows.

There are so many similarities, e.g. in the demands (research, drugs, acceptance), and in the discrimination itself. But also in this: "We have to break up the cult of experts. We are the experts in Aids."

Act Up was provocating. As they said you need to stirr up the leaders, you need to make it uncomfortable for them. That is something pwME (and with other discriminated diseases) can do, too, in their way.

Edit: Working with "health care as a human right".

 

I think that @Inara has hit on a good point. I hadn't thought about it that way before but if we are quiet or only play nice/by the rules others have laid down then we are abdicating the right to speak plainly and clearly as to the real harm being done. We are in a sense doing the whitewashing for them.

That's not to say that the ACT UP style is the only way to take our message out to the public. I think after the initial shock of speaking out this way people might start to see the point.

ME is not AIDS so there are differences of perception yet I do think there is a place for more confrontational methods of communicating. And as stated, the more restrained we are the more the powerful can push to gag any kind of dissent from their official version of reality.

Something to consider.