By David Hamburger
With the talk a lot of us have had of getting back into the fight, I wanted to address the guilt that so many of us activists from back then have felt for having left the fight so many years ago.
Certainly, part of this whole process for me these past few months of dealing with my emotions around my experiences in ACT UP has been dealing with my own feelings of guilt for having abandoned the cause so long ago. I look back at how important this all was to me, and have trouble understanding how that changed for me. It’s a really complex answer that I probably never will understand completely.
First, I don’t think any of us have anything to feel guilty about. We did more than anyone had any right to expect of us. We suffered more than anyone had any right to suffer, and we accomplished more than anyone expected us to— except ourselves.
I look back at that time, and what we faced was so huge. While a lot of us were fatalistic about it, I also think that in a lot of ways we were unreasonable in our idealistic expectations of what we could accomplish. Somehow, I think deep down, we thought we could not just get a cure for AIDS, but also fix a broken health care system and while we were at it, fight to end poverty, racism, sexism and homophobia.
But let’s be honest. At our peak, we were maybe 5000-10,000 people in ACT UP chapters and affiliated groups worldwide, and I suspect that’s being very generous. Think about that. That’s a tiny fraction of people who show up at the AIDS walks or at Pride. That’s 10-20 percent of the number of people who go to a ball game. We may have been amazing people, but there really weren’t many of us.
It seems absurd to me now that we actually thought that we could get single payer national health care in the U.S. with so few of us. Look at how much it took so many people to get the watered down version that we got. Never mind a cure for AIDS or an end to all of the linked problems that made AIDS so much worse.
But look at what we did accomplish. We changed the system and made it start to work for what we needed to save lives. Even though many of us dropped out of the fight before the HIV drug cocktails were approved, we set the ground work that made it happen. And those among us who stayed in the fight finished it for us (Well, that part of the AIDS battle at least.)
Our efforts helped to save 9 million lives. That comes to about 1000 people for each of us. How many people in this world can claim that?
More importantly to me, we saved so many of our friends. Seeing so many of them online just reinforces that for me every day now. Yes, we lost so many, and we can never forget them. But we saved so many of us. How many people get to help save their friends’ lives?
In addition, we made so many other changes that have helped so many others, such as changing the entire concept of patient advocacy in the government systems as well as changing the drug approval process for all drugs. We helped stem a wave of gaybashing, and set an example for generations of queer kids behind us, helping them come out, which is leading to all of the changes and progress we’re seeing now— and so, so many more accomplishments.
Yes, most of us left the fight early. Most of us had to. It had taken too much of a toll on us, even if some of us didn’t realize it at the time. We shouldn’t feel guilty for bowing out when it became too much for us. We should be proud that we stayed in it as long as we did and honor and respect those of us who did stay.
There are also a lot of ACT UP survivors, both positive and negative, who feel guilty for having survived when so many died. It’s a natural reaction people have when losing friends and colleagues. But none of us in ACT UP should think for a second that our lost brothers and sisters wouldn’t have wanted us to survive without them. It’s exactly what they fought so hard for. They would be thrilled to see us here today thriving.
No, I say we’re totally being unfair to ourselves if we are making ourselves feel guilty. We accomplished so much more than we should have.
If we decide to get back into this fight again, it should not be out of guilt. If we do, we’re setting ourselves up for unreasonable expectations. I don’t want to go through that cycle again! We all now know what it did to us last time.
Instead, we should do it because it’s time.
Because we’re ready to kick AIDS’ ass again.
Because we’re needed again.
Because someone has to teach these kids how it’s done.
Because someone needs to kick the community’s ass back into action.
Because when we are together and united, we can accomplish amazing things.
We already have.
David Hamburger was a passionate, committed member of ACT UP/Boston and ACT UP/New York from 1988 to 1995. He still lives in Boston but spends much time on another great passion of his, traveling to ride roller coasters.