When you think of ACT UP (AIDS Coalition to Unleash Power), you probably think of gay men. You probably think of Peter Staley and the others in How to Survive a Plague. And you probably think that what they did was all in the past.
When I walked into my first ACT UP/NY meeting over two years ago, it was a far cry from the overflowing crowds portrayed in that documentary. Though attendance has steadily risen since then, not more than a dozen or so people sat in a circle.
I try to plan my trips to New York so I can attend the Monday night meetings at the LGBT Center on West 13th Street (everyone's welcome). Some members have been there since the beginning. Some, like me, burned out on the cause and backed away in the '90s, only to return when it became clear that the epidemic was far from over. Many of the new members are young, energizing us all.
The men and women (yes, there are a few of us) come from varying backgrounds, all ages, many ethnic groups. But regardless of formal education or tax bracket, they share one thing in common: the desire to put an end to AIDS once and for all.
I'm the first to admit that the introduction of the "cocktail" in 1996 gave me a false sense of security. The urgency was gone, so my work as a fundraiser wasn't as critical. My friends weren't dying; in fact, they were thriving. In the gay papers, pages of obituaries were replaced by pages of ads for the latest drugs, full of the promise of "living well with HIV." Everything was under control.
In 2011, when I contributed to Windy City Times' "AIDS@30" series about my experience as a straight woman in Chicago's AIDS community, I wasn't prepared for my reaction. The memories, which I'd successfully suppressed for almost twenty years, rushed back. Very few were pleasant. The rush of emotions initially confused me: where did so much anger come from?
I began to write more about those days and catch up on the current state of the epidemic. Still, it took me two years to walk into that ACT UP meeting. Though I've always been politically active, even lobbying in Washington for the first Ryan White Care Act, I'd never gotten this involved on the activist side of the epidemic. And let's face it: I'm not the kind of person who springs to mind when you think of ACT UP.
But then I thought, "Why the hell not?"
I'm humbled by the knowledge base of the members of ACT UP. Whether it's public policy, insurance company rules, housing, employment, education, TasP (Treatment as Prevention) -- anything that impacts those infected with HIV or those at risk -- someone there is quite frankly an expert.
That's been one of the hallmarks of ACT UP from the beginning: those who advocate must be knowledgeable. They were not going to be (just) angry voices: they would be angry voices who could hold their own in a debate with legislators, bureaucrats, researchers, the media and medical professionals. If knowledge is power, they may be one of the most powerful organization in the world.
Those skill sets are not the sole purview of gay men in New York City. They are the skill sets of men and women everywhere who fight for their lives and the lives of their friends. When I say I'm humbled by their knowledge, it's because there are moments when I sit in the meetings, struggling to understand a report given by someone who has self-educated on complex topics, and wonder what the hell I'm doing there. But I keep going back.
The knowledge base is only exceeded by passion. For some, it's new. For others, it's been re-kindled. That combination has resulted in success after success. Recently, ACT UP/NY members contributed to New York's Blueprint to End AIDS by 2020. When several months passed without the public release of the document, ACT UP forced Governor Cuomo's hand. They mentor college activists. Reports of the death of ACT UP have been greatly exaggerated.
To my amusement, I have become the go-to person for many of my straight friends when it comes to information on marriage equality, transgender issues or HIV. In fact, I'm thinking about starting a retirement account, funded by adding $1 every time a straight friend begins a conversation with "You're the only person I can talk to about this."
Like the old days, I see many things through the lens of HIV: affordable housing, drug pricing and availability, jobs, mental health, etc. "If you're not at the table, you're on the menu" has become my mantra: those who advocate for people affected by HIV have to be part of all of these discussions, or their voices will simply not be heard.
So, back to the headline: "Why I ACT UP."
We've been talking about this a lot, as part of ongoing outreach and our GoFundMe campaign. I thought I would have a different answer than I had in the 1980s. I assumed marriage, motherhood, and normal aging would create a new reason for why I walked into that meeting. Thirty years later, I now have a gay nephew and friends who are long-term survivors. But that's not it.
I was asked why I was there and answered, somewhat flippantly, "Because I've never been arrested and I think it's time." I still haven't been arrested and I still think it's time. But that's not it, either.
You don't have to go to meetings or get arrested to make a difference. There are as many ways to get involved as there are people.
As it turns out, I ACT UP for the same reason I got involved in the community all those years ago: because I don't want to look back and wish I'd done something when I had the chance.
If you need a reason to ACT UP, feel free to borrow mine.