Saturday, October 5, 2013

AIDS is Not History and neither is ACT UP: Die In at "Why We Fight: Remembering AIDS Activism"

ACT UP in all its glory - photo ACT UP

There are few more powerful symbols of this than the ACT UP die-in, designed to bring the casualties of the AIDS war home with images of bodies in streets and corridors of power.  It is ACT UP’s most telling of performances.  As long as there is an AIDS epidemic, there will be an ACT UP, even as the group ebbs with the currents of the epidemic. People, come and go; participants die; communities are decimated and ACT UP meetings continue.  Despite this people have been writing premature autopsies for ACT UP for as long as I have been involved with the group, two decades now.  Yet, in between the ebb and flow of countless movements, from Global Justice to Occupy, ACT UP has remained, raging forward to fight this cruel epidemic.  

ACT UP die ins around the world.  Countless groups and movements have borrowed this theatrical gesture, including  activists in Paris, at the Occupy One year anniversary photo by Elizabeth Brossa, Reclaim the Streets at the IMF World Bank photo by Caroline Shepard.  ACT UP Paris Photo by Directphoto middle. 

Organizations and social movements are not co-determinants.  Affinity groups come and go, as  movements churn forward, their members drop out and others join in.  Issues change and people adopt to a social environment in constant flux.    If one conceptualizes movements as interest groups, then a chronicle of the organizational rise and decline feels appropriate.  The problem with this analysis is that it is not always accurate.  Social movements are far more complicated than this.  A richer way to approach movement scholarship is to consider the work of individuals and cohorts across time.  If one thing has been consistent, it has been people ready to fight the carnage.  Groups have come and gone; affinity groups have risen with trends; some have declined and others reborn.  People constantly drop out of AIDS activism.  And there are number of reasons for this.  The life course of most direct action groups is two or three years; yet others tend to arrive to continue the work.  And in the unique case of ACT UP, they continue for decades. 
Simultaneous with this activism has been the almost two decade long discussion of the decline of ACT UP.  I remember sitting in the gym in 1993 reading and article in Out Magazine entitled, “Whats going down with ACT UP?” in which the author challenged the premature autopsies (see Chew, 1993).  People talk all the time about what happened with AIDS activism, Cleve Jones explained to me in 1995.  Yet the single most significant thing which happened was that people died, he explained (Shepard, 1997).  And many grieved during this period.  Some walked away to take a needed respite from thanatos.   I recall standing in front of the AIDS quilt in 1996 in Washington DC, with tears in my eyes, and making up my mind not to cry about AIDS anymore, no matter what. And that kept me going for the next eight decade, as good friends died; my clients overdosed, were shot, one was thrown out of a window of a single room occupancy hotel.  Yet, they continued to cope and contend with the complications of living with HIV, hepatitis C, and any number of other compounding factors.  Others watched their groups disband and despaired.  “ACT UP/Chicago was disintegrating right in front of our eyes,” Debrah Gould recalls from 1995.  “I sensed this was it for ACT UP / Chicago,” (p. 268).  Gould is right, a chapter in the two decade history of ACT UP ended that day.   But was this it for ACT UP Chicago or the AIDS direct action movement?  It is not easy to say.  Certainly, the historic record suggests otherwise (Sawyer, 2002).  ACT UP New York held a meeting tonight, some fifteen years later. 

The theory that AIDS activism died with the decline of the early cohorts of ACT UP  has been around since the early 1990’s when the first generation of ACT Uppers stepped aside or died trying to stop this thing.  Still, in the years since ACT UP’s peak, affinity groups organized to fight AIDS through direct action have come, gone and been reborn. And to be fair, Gould acknowledges that certain chapters of ACT UP continue.  Yet, she does not appear to hold their efforts in high regard.  Still, the movement has continued.  Here in New York, affinity groups around AIDS / queer politics, including SexPanic!, Fed Up Queers, Gay Shame, Queer Fist, and even the Radical Homosexual Agenda have taken on simultaneous struggles against homogenization and the ongoing AIDS onslaught.  AIDS activism has overlapped with struggles around public health among communities of color dating back to the Young Lords and extending through ACT UP’s majority Action and Syringe Exchange  Committees into direct action organizations, including CitiWide Harm Reduction, New York City AIDS Housing Network, and Housing Works.  Each still make use of direct action to get the goods today.  Others, such as Eric Sawyer (2002), one of ACT UP’s founders helped push ACT UP an international direction, helping found Healthgap, which has successfully pushed drugs into bodies of people across the globe (D’Adesky  2006).  Militant AIDS activism was not born with ACT UP; groups such the Names Project and Lavender Hill Mob owe as much to gay liberation as they do to the queer direct action which followed, as AIDS activism dovetailed with the global justice movement (Smith and Siplon, 2006).   And most certainly, militant movements would continue around AIDS activism …  

ACT UP and Occupy banner at Washington DC International AIDS Conference 2012.
Photo by Peewee Nyob

With all this in mind I attended the ACT UP planned die in at the NY Public library on Friday. As the Facebook invite noted:

ACT UP/New York will mark the historic New York Public Library exhibition on AIDS activism with a “die-in” on the first day of the "Why We Fight: Remembering AIDS Activism" exhibit, Friday, October 4th, at 5pm.

Please join ACT UP and allies from near and far to make the link to present-day HIV-related issues that desperately need media attention. Please contact ACT UP and help us say: AIDS is Not History!

When: Friday, October 4 at 5pm sharp
Where: Stephen A. Schwarzman Building, Fifth Avenue at 42nd Street
Meeting Place: Entrance to the exhibit
Who: ACT UP and allies

On the ACT UP list serve, Mark Milano pointed out how important it was for all of us to take part.

I want to emphasize how important this die-in is.  It's been publicly announced as a way to make it clear that AIDS, and ACT UP, are not history.

But if we have only a handful of people, it will reaffirm the long-stated lie that ACT UP is dead.

PLEASE come, and spread the word - we need at least 30 bodies on that floor to make an impression!

This is a no-risk action that will send a powerful message if it succeeds - and an equally powerful one if if fails.

Are you with us?

Mark Milano

Over the last fifteen years, Milano has been one of the most effective activists in New York, responsible for zapping Aetna health insurance company when they denied him access to medications, leading a die-in during the beginning of the war in Iraq, zapping delegates at the RNC in 2004, and taking a lead in the international AIDS drug access campaigns of the early 2000’s.  Living with all of this, he’s still at AIDS activism because his life depends on it.

So do many of our lives and communities.  ACT UP stalwarts Jim, Nanette, and Andy Velez chimed in that they would come, as would Reginald, Ed and countless new activists. 

Riding my bike to the zap, a felt a sense of profound energy riding up Madison up to 42nd for the action. 
AIDS activism does not belong in the dustbins of history, with  a coda to history.

And it certainly did not feel that way when I saw rows of police cars by the public library when I arrived at quarter of five.  One was picking his nose.  Bacillo Mendez II was outside negotiating with white shirts.   

But it does have a profound history, as Andy Velez explained standing around the show before the action.
He first became AIDS activism had a place in the larger history of social movements during an election night rally in 1992.  There he realized how many people from middle America were ready to leave the sidelines and support ACT UP against Bush.

ACT UP has rightful place in the history of the left, as a place for a defiant, devastating, and delicious brand of high octane, often angry, ludic activism, which still continues.  Yet, so do the deaths and infection rates. 

The exhibit highlights much of this history, including rarely applauded working groups such as the syringe exchange. 

Institutionalizing activism has way of taming it. It put a period mark on the Civil Rights movement, years too soon.  That is why ACT UP was at the museum, to remind everyone that the imperative of AIDS activism remains.  The AIDS crisis continues. ACT UP is still here. 

Top photos by Benjamin Shepard
bottom Jim Eigo explaining his re engagement with ACT UP and the imperative of AIDS activism,
bottom Michael Tikili and this author. Photo by Reginald Brown

So,  we marched out of the exhibit, chanting ACT UP Fight Back, Fight AIDS!  And fell to the ground, silent remembering the dead and the activism we have ahead of us. 

Die-in photos by ACT UP

As my friend Eddie Fukui writes:

AIDS is NOT history.
“While it is important and necessary to remember those that have come before us, the fight to ‪#‎EndAIDS is by no means over. ACT UP, FIGHT BACK, FIGHT AIDS!”
My buddy Peter Shapiro came along and took this picture after the die-in.
It feels so good to be with ACT UP again. 

Activism engages us in a dialogue with people, an engagement with powers and principalities, a conversation with history.  It is an opportunity to contemplate what is real and important and meaningful in this world.  It is a story stretching through decades of cohorts of activists.  And this story is by no means over. 

Post script

To continue some of this conversation join me Tuesday at Museum of Reclaimed Urban Space for:

On the East Village, Street Activism, and the Gentrification of the Mind.

A discussion ofSarah Schulman’s life, writing, and the history of East Village activism, art,and the gentrification of the imagination between Sarah Schulman and BenjaminShepard.

Does social change come from institutions or from grass roots movements? And what of the legacies of AIDS, housing, and gardens activism in New York’s East Village? Did the city create these changes or did activists? And what is the legacy of these struggles? Will the efforts of regular people be lost to the gentrification of the imagination or can regular New Yorkers create their own history and institutions?

Join Sarah Schulman in a conversation with Benjamin Shepard about the gentrification of the mind. 

Sarah Schulman is the author of 16 books, most recently The Gentrification of the Mind: Witness to a Lost Imagination (U of California Press) and Israel/Palestine and the Queer International (Duke University Press), she is co-producer with Jim Hubbard of the documentary feature film UNITED IN ANGER: A History of ACT UP, which they will be screening in Moscow at the end of October. Sarah is Distinguished Professor of the Humanities at the City University of New York, College of Staten Island and on the advisory board of Jewish Voice for Peace.

155 Avenue C, New York, New York 10009


  1. Roaring through the halls of the New York Public Library with my fellow ACTors UP: acoustic sublime. What beautiful music we make together.

  2. Brilliant. Sadly, Gould is still right: there is no AIDS activism in Chicago, so I have to keep yelling.

  3. You know, I am a member of Act Up Paris. I have been photographing their actions as a free lance photographer for some 20 years. I don't mind that you reproduce an image here, but would appreciate it if you give me credit and a link back to the website.