Lessons from the AIDS movement

How to keep the momentum going (even when you want to quit)

JEN: I have another question from, from, Emily C. Actually there are sort of two related questions, one also from Laura, and Emily asks, “How does a movement retain momentum over the long-term, especially when faced with great setbacks, disappointments, and the poor health of advocates? What is effective for keeping momentum going and ill people engaged?” And then Laura asked something related, if I can just find it, which is “How much anger is effective and necessary in this kind of activism? I get exhausted from being too angry and I think that’s a problem for many of us.”

PETER: Those are good questions. It is very hard to maintain and to keep this going year after year especially when you don’t get… Oh we have a cat joining us! When you don’t get optimistic news to keep you going and the research isn’t panning out or nobody’s caring, you know we had ten years of ups and downs and the downs were generally much worse than the ups because they were just so, so disappointing, and the deaths, the deaths just kept going up and up every year, that never changed. So people definitely dropped out and were exhausted by it and there was constant flux in the movement. The movement fractured as you saw in the film and TAG split from ACT UP, so ACT UP, that happened five years in, but the work continued. Movements change over time. AIDS activism is needed now as much as ever. And it’s a much smaller, it no longer has the active participation of the entire LGBT community, that community has moved on to marriage equality, but the AIDS activists who are left, which cross various communities now are a very lean mean group. We are, on average we are a smarter movement than we have ever been. We are more expert than we have ever been. A lot of us are in, collecting a salary on this work now with various AIDS groups and we’re doing it full time, and we have all the access in the world that we didn’t have in the beginning.

JEN: In the film there’s a sort of really moving moment where I think you and several other members of maybe one of the, I’m not sure if it’s at TAG but you’re in someone’s apartment and you’re talking about this feeling that you’re not, you know you’ve been fighting for a while and that you don’t believe that you’re going to live to see a cure that you’re going to live to see the thing that you’re all fighting for and there’s this feeling of the future that you’re fighting for is really far away. Much farther away than the five or ten years that it ended up being. And I wanted to ask you personally, did you have moments when you just were like, I can’t do this anymore, it’s just too much?

PETER: Sure, and during the split year, the last two years before we split off for TAG I felt that a lot because it had stopped becoming, the upside had disappeared. The medical news was so depressing, we didn’t seem to be making progress, and the family that I found within ACT UP was like the worst family life you could imagine, you know, it went from a loving family to this horror story where Mom and Dad are beating each other up every night and everybody’s drunk and it’s just a horrible, horrible scene. And it was, you just want to get out.

And I, a lot of us worked really hard to figure out, well how can we make this mentally safe again so that we can continue this work. And that’s ultimately what lead to the split, was our desire to keep doing the work, but not be so emotionally distraught while we were doing it. To take care of ourselves, and you’re not gonna get anything accomplished if you’re miserable the entire time while you’re doing it. There’s gotta be some, some joy and some camaraderie in fighting these fights. Even if you think you’re not gonna live long enough to see the fruits of your effort, to do this type of activism for a larger health community where you know that you’re fighting for thousands of other people can bring a real sense of accomplishment just by the act, just by the trying.

And so for me and many others it was, it was a choice. You could either give up, and surely die, or you could die fighting, and dying fighting sounded more alive to the rest, to most of us. It sounded like the way to go. And it, at many times it was joyous, the work we did. It was very loving and empowering and even when you weren’t winning, just the, the act of fighting was very empowering.

NEXT: You don’t need huge numbers to make a difference

For more, browse other short, 2-3 minute videos or watch the full, 70 minute interview with AIDS activist Peter Staley. You can also out the HMC case study of AIDS advocacy, as well as the documentary film How to Survive a Plague. 

4 thoughts on “Lessons from the AIDS movement”

  1. Very interesting and also very moving. Good work Jen and Peter. Campaign-fatigue definitely seems to be a thing and I’ve been feeling like giving up. Like Peter said, I feel so emotionally distraught by campaigning sometimes, especially at the moment but what has spurred me on this week is the encouragement from Rachael on the #MEAction team and getting good feedback from other pharmacists about what I’m doing with patient empowerment and raising awareness in my profession, so that pharmacists know about ME. Maybe we need smaller goals like that, as well as the main long term goal.

    Maybe because there are so many of us we can afford as individuals to take a break of a few days or weeks as there are enough of us to swap in and out depending on our health at any given time. Like Peter says we probably need to look after each other too, encourage each other and join forces and definitely not fight amongst ourselves, which is probably the most disheartening thing when that happens.

    I think #MEAction is a brilliant concept and it’s going really well. We can use #MEAction to encourage and support each other as well as the other things it’s useful for. Good work and best wishes, Emily, UK.

  2. Great work Jen and #MEAction , invaluable experience here to learn from Peter and the Aids movement . I think in order to have a real impact now in the near future there needs to be a coherent organization on a larger scale to tackle governments and insist that we are no longer taking this lying down and its not acceptable to ignore us and maltreat a large proportion of sick patients. Get the funding , get the publicity , Get the treatment !, #MEaction to the rescue 🙂

  3. I watched the documentary the night before the interview and I participated in the Google hangout. It was definitely inspiring. My big takeaway from this particular segment is that camaraderie is essential to functioning cohesively as a group. In my experience the group I was involved worked more effectively after we had taken some time to get to know one another, to discuss our lives a bit, to care about one another. It does not mean you will agree but when you do disagree you try to be respectful about it. Also, you really listen to each persons opinions and sometimes the disagreements make much more sense because you know where they are coming from.
    We can’t have gatherings and share a meal regularly. We aren’t attending each other’s life events. However, we can definitely develop friendships and the loyalty of comrades-in-arms. I often see the “no man left behind” spirit in the ME community because we are in the same battle.

    I think that we would benefit from the basic get-to-know-you activities that go on at gatherings but in an online form. We can still chat and introduce ourselves, play the silly games that encourage you to share information about yourself, and just spend some of our precious functioning time together having fun. In working in a group situation trying to campaign together at first I felt guilty if the conversation wasn’t actively focusing on solving this horrible situation but we worked together so much better for having that time.

    I am an introvert and do not lead socializing well but I think we as a community can definitely benefit from it.

  4. Is there any way for ME action to get an overview of patients involved in any form if advocacy for #MEaction?

    Who tweets on wednesdays?
    Who shares a lot on FB?
    Who brings on ideas?
    How many countries are involved untill now? Etc etc

    A seperate MEaction advocates group in which You invite possible members based on their involvmenr would help on a ‘Get to know one another’ basis, but also when someone is ‘put’ Back-up can be plannen when needed.

    Just my 2 cents.

    Thank You for all You do!!!

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