ACT UP/NY’s Non-Reunion Reunion

Few things get your attention like hearing the news a friend has died. For many of the original members of ACT UP (AIDS Coalition to Unleash Power), the death of Spencer Cox was just such a wake-up call.

Keep in mind that these were men and women who lost dozens, if not hundreds, of friends to AIDS. They were on the front lines of the epidemic: educating, advocating, demonstrating, demanding. Some of them carry the AIDS virus themselves, saved by the ‘cocktail’ developed in 1996.

So you could forgive them if the numbness of experiencing so many losses would affect their ability to grieve. Similar to the military, you have to put your grief aside because the deaths just keep on coming. You tell yourself you’ll do something about it – feel – later. Sometimes you do, sometimes you don’t. Sometimes you just want to forget any of it ever happened.

It’s impossible to meet a veteran without hearing their stories of war. Those of us who were involved in the AIDS community, though, have been really good at keeping those kinds of stories to ourselves. I don’t remember making a conscious decision to put that time of my life away. I was just consumed with other priorities: getting married, raising my daughter, starting a new business.

Two years ago, I was asked by Tracy Baim at Windy City Times to contribute to their excellent AIDS@30 series, to reflect on my work as a fundraiser in the 80’s and early 90’s. It was nothing if not cathartic. People and incidents filled my mind, and I was stunned by the amount of anger I still felt. Friends and family were stunned, too: “I didn’t know you went through that. You never talked about it.” I knew AIDS would be part of my Friend Grief series of books, but that opportunity kind of opened the flood gates.

A few months ago, I attended my first ACT UP meeting while in New York. I was a little surprised at how small the group was, especially after seeing How to Survive a Plague, with its videotaped meetings of overflow crowds.

It was there that I met one of my long-time, somewhat-forgotten heroes, Jim Eigo. He told me about a benefit screening taking place in West Hollywood, when I would coincidentally be in L.A. for a conference. I attended it, and met another former ACT UP member, William Lucas Walker. Back in NYC in June, I met Peter Staley, the subject of the iconic photo taken by William that can be seen on HTSAP posters. I was - and am - inspired by them all.

Spencer Cox’s memorial service brought together many of those original ACT UP members. Now they knew what military veterans have known for centuries. “We realized we missed each other,” recounted Alan Klein in a recent article in Gay City News. “We missed our sense of shared community. It was a healing experience.”

So this weekend, June 22, the ACT UP/NY (Just Don’t Call It a Reunion) Reunion will take place at 49 Grove St.

AIDS is far from over. Klein said the goal of the event is “to create a safe space for people to talk about these series issues or about what they’ve been doing for the past number of years. Maybe it will be a reboot of our experience in ACT UP.”

I wish them well. After one of my high school classmates died on 9/11, our class – which had had a reunion just the year before – decided good intentions for keeping in touch were not enough. We started a Yahoo group to keep everyone informed: not just about how we wanted to honor Carol’s memory, but personal things like deaths of parents, spouses and other classmates, births of grandchildren, and the like. We get together periodically for group dinners, and smaller get-togethers. It changed us as a class and as individuals. I’m now close to women who barely spoke to me when our lockers were close together. The Yahoo group and my class are still going strong. It’s all good.

I hope it is for the members of ACT UP, too.

If you are reading this and were a member of ACT UP/NY back in the day, you can visit www.actupnyalumni.org for more information on the Non-Reunion.

AIDS: Everything Old is New Again

“Those who cannot remember the past are condemned to repeat it.” – George Santayana

 There is perhaps no more perfect quote to describe the current state of the AIDS epidemic. A close second would be “out of sight, out of mind.”

Last week I found myself at a fundraiser for the West Hollywood Public Library Foundation and the proposed AIDS memorial. It was a benefit screening of How to Survive A Plague, the Academy-Award nominated and much-honored 2012 documentary about ACT UP New York and the AIDS epidemic.

I spent time with Jim Eigo, a founder of ACT UP NY, who I’d met at their meeting in New York earlier in the month. He participated in a panel discussion that followed the film.

What made me sad – and angry – was that the second book in my series (Friend Grief and AIDS: Thirty Years of Burying Our Friends) is so relevant today. When I started writing it, I thought it would be more of a reflection of my time working in the AIDS community in Chicago in the late 80’s and early 90’s. Boy, was I wrong.

Between the ACT UP meeting and the panel discussion, I felt like I was in a time warp. What year is this, really, when we’re talking about the rising number of infections in young gay men? What year is this, really, when we’re talking about the critical need to lobby our legislators, at all levels of government? What year is this, really, when we’re talking about the threat of AIDS at all?

That time warp is why I’m angry all over again. There are differences, big differences between the early 1980’s and now. We didn’t know what AIDS was (or what to call it), how it was transmitted, how to treat it. Now we know, but it’s still here, still a serious threat, no matter what you’ve been told.

Thanks to medical advances, people really do believe an AIDS diagnosis is no big deal – maybe even an advantage in certain situations. You still think only gay men are at risk? How about women over 50: “I can’t get pregnant, I don’t need a condom.” The truth is still what it was 30 years ago: everyone is at risk.

So while I’m gratified by the early positive reactions to my book, I’m also distressed by the fact that AIDS is still here, still without a cure, still without a vaccine. I’ve lost too many to this equal-opportunity virus; maybe you have, too.

I now find myself part of a second wave of activism, one which is sadly necessary. I hope you’ll join me, so you don’t find yourself grieving for a friend (or two or ten or a hundred) who died from AIDS.

"How to Survive a Plague"

Art by Keith Haring

There’s a moment near the end of How to Survive a Plague, the powerful new documentary about the AIDS epidemic, and specifically, the role of ACT-UP in changing the way drugs are tested and made available in the US.

There’s a contentious meeting of ACT-UP New York going on, and playwright/activist Larry Kramer is shown, his face tightening in frustration. Finally he explodes: “Plague! We’re living in a plague! Listen to yourselves!”

Living through the beginnings of the AIDS epidemic was like living in a plague, or in a war, because it was both: a health crisis that became a desperate war to save lives.

The truly remarkable thing to me about this film is that it exists at all. Much of it is archival footage from 1986-1995, shot by members of ACT-UP.

So you actually see the demonstrators lying prostrate in the center aisle of St. Patrick’s Cathedral in New York, protesting the cardinal’s condemnation of the use of condoms to prevent the spread of AIDS.

You see the unfurling of the Names Project AIDS Memorial Quilt, covering the National Mall in Washington for the first time.

You see speakers at the International AIDS Conferences in San Francisco and Montreal, as well as those at NIH meetings, interrupted by chanting demonstrators.

You see executives at drug companies confronted by dying men who demand to know why their clinical trials and testing  - for drugs sold over the counter in other countries - drag on for years.

Act up.

Fight back.

Fight AIDS.

And perhaps most remarkably, you see videos of ACT-UP meetings, where members – some still alive, many long dead – debate and strategize, self-educate and threaten, laugh and cry and scream as they create a new model for fighting an entrenched bureaucracy. The willingness to show this footage – warts and all – is brave, fascinating and instructive. “They knew as much about this as we do,” admitted more than one medical professional.

We forget now that there was a time when people suffering from diseases did not show up by the hundreds at drug companies or government offices demanding funding and new treatments.

We forget that people with AIDS were left to die in emergency rooms. Afterwards, their bodies were stuffed in big, black garbage bags, and left unclaimed by disapproving families.

We forget that for every right we enjoy, there is a battle that went before, a battle to earn that right: a fight, at times, to the death.

The next big crisis may not be a disease or a virus. It may be environmental. It may be a war. But the lessons in this film apply to all those situations and more. In demanding fairness and hope for those you love, you can save millions.

It’s possible that, watching this film, you will disapprove of ACT-UP’s tactics. You will believe that there is a more conventional, less confrontational way to get your point across.

But until – and unless – you fight for your life or the life of someone you love, only to face indifference, discrimination and hatred, you don’t really know what you’d do to save a life.

How to Survive a Plague shows us all how to do just that.