AIDS Activism and the Places It Takes Me: World AIDS Day Blog

All these years later and AIDS activism still takes me through cycles of emotional spaces - from joy in imagining all we can do, to the sadness at the limitations of greed, of science, the connection as we take care take care of each other in times of need, and the regret for the cruelty we sometimes inflict on each other.  These are all some of the experiences of coping with AIDS. They are a few of the emotions which have accompanied the last two decades of my growing up and finding a sense of meaning in this world.  "AIDS is like the polishing on the soul" my friend John Calliau explained in San Francisco decades prior.   It illuminates what we can be and so often what we are. 

 

A few weeks ago, my friend Jay Blotcher wrote inviting me take part in a panel he was organizing up state on AIDS activism and the film "How to Survive a Plague"    Jay has helped with so many writing projects, queries, and stories over the years so I was more than happy to try to return the favor.  Every year I try to honor world AIDS day and the many friends I have seen shuffle in and out of this life.   So, this panel represented a small way I could contribute.  I would participate as long as I could speak my mind I told Jay.  This is the third major documentaries which covers the history of the Treatment and Data committee of ACT UP.   As long as I could mention my concern that other committees such as Housing, Women, and Syringe Exchange needed due attention then I would be happy to attend.  And Jay was fine with that. 

 

One final reminder to Hudson Valley neighbors; Come to this World AIDS Day event tomorrow (Sat, Dec 1, 2pm). Director David France will appear in person at the screening of his award-winning new documentary "How to Survive a Plague" at Rosendale, NY. Rosendale, NY.  I will moderate a panel afterwards with France, ACT UP veterans Victor Mendolia, Linda Meredith, Neil M. Broome, Gerri Wells and Benjamin Heim Shepard, and local AIDS prevention specialist Tony Beaudoin of ARCS. Tickets at the door ($7 general/$5 members, students) will partially benefit the Hudson Valley LGBTQ Community Center in Kingston, NY.  

Several panelists noted that there are other films and stories about ACT UP, including United in Anger.

 

Driving up from city, the GPS took me across Canal, through the Holland Tunnel, New Jersey, and into New York where peaceful country roads brought me down Main Street to Rosedale New York.  Looking at the hills in the back of the Rosedale Theater, I wondered how I had found myself in this gorgeous place.  It was like a time outside of time, a small town with a lost picture show like movie theater, on a main street lined with mom n pop shows, a small corner deli, and a shop selling Tibetan imports. I could get lost in a town like this and never leave. 

Scenes from Rosendale New York.

 

 

 

On my way inside, I stopped for  some soup, took in some of the character and walked back to the theater.  Inside, the concession stand was selling popcorn. 

 

 

 

 Jay was there to greet me.   He invited me to sit with himself and fellow ACT UPper Neil Broom. 

 

The lights went down and the screen filled with images of ACT UP's 1989 zap of City Hall.  "This is a very well organized demonstration," notes an anchor women with CNN. We follow Peter Staley through his well chronicles journey from Wall Street into AIDS activism, fighting to push the federal government and later drug companies to research, approve and distribute medications which will save both himself and a generation.

 

In the meantime, Staley and his comrades from the Treatment and Data committee must content with a struggle over red tape, barriers from the government, bitter infighting from within the movement, and ever present losses. 

Rafsky speaking by Tony Autoharp

 

A driving storyline of the film are the struggles of Bob Rafsky, ACT UP's former media coordinator, who famously zapped presidential candidate Bill Clinton, putting AIDS on the presidential agenda.   Despite all the success of his push for parallel track fast tracking AIDS drug approvals, the medications do not come fast enough for Rafsky, who we see chiding a drug company executive noting that the black mark on his face is a KS lesion.  In between birthday parties and trips to the theater with his daughter humanizing the activism, we witness Rafsky deliver a eulogy for a friend carried out of Judson memorial church.  Eric Sawyer holds Rafsky as his talks about the sword of Damocles hanging over everyone's heads and the ways their souls will contend with this, paraphrasing from Pericles' funeral oration from the History of the Peloponnesian War.  It was only a few short months into the Clinton administration before Rafsky would shuffle off this mortal coil himself. 

 

Gradually several of the heros of the film are lost.  We laugh at his rendition of Jesus Chris at Stop the Church before watching Ray Narvarro consumed by the virus. 

Those years from 1992-1995 were when I first became involved with AIDS activism, just as movement fatigue was settling in.  News from the International AIDS conference in Berlin suggested few of the approaches taken toward drug research were producing any results. The mood was as grim as ever with AIDS death rates reaching their highest rates in 1995.  The papers were filled with obituaries of people with HIV/AIDS.

 

Yet, then in 1996 something remarkable happened - the treatment breakthrough which had long eluded activists and scientists was achieved.  And those who been sick became well again.  You could see the KS lesions which had been on people's skin disappear noted Mark Harrington.  Staley recalls watching himself and  his friends all of a sudden get better.  The treatment worked.  And activists who had thought they were going to die for a decade started to realized they would live.

 

The film's most moving scenes follow close ups to the faces of the members of the Treatment and Data Group two decades later, having survived, and in some cases coping with survival guilt.  Why did we survive while others did not, they ask over and over, wishing the treatment had just come earlier. 

 

Despite all my misgivings going into the movie, I was more than moved by the accounts from activist heroes such as Jim Eigo and their lesson that regular people really can make a difference in this world.  It is impossible to watch this movie and remain cynical about the ways regular people can really impact change. 

 

After the lights went up, David France, the film's direct stood to speak.  He described editing the film's initial edit of 13 hours into this.  We literally had to edit out lives, recalled France.  He was also more than ready to admit the film only covered one of many AIDS narratives, a small section of ACT UP, omitting group's such as ACT UP's housing committee which later became Housing Works, who have stayed active.  What the film does remind audiences, who were unaware, that all this really did happen.  Many audiences had no idea.  And many thought the government improved its response on its own, explained France echoing Sarah Schulman's argument from her work The Gentrification of the Mind.  France was quick to point out that ACT UP is still active.  Yet, the film has forced many, including former Mayor Ed Koch, to rethink his views of what happened during those days, and what the legacy of AIDS activism should be.  Koch published a review of the film in which he praised the group, in his own mea culpa for the record.  

 

Jay Blotcher invited the rest of us up for the panel asking us about our initial impressions.   Gerri Wells confessed that she had cried through much of the film.   "There were so many barriers we had to dispel," she explained, brandishing her old ACT UP bullhorn.  "There so many barriers.  Yet, we went out and said  you are not going to get rid of us.  The government is not going to sweep us under the rug."  Despite this, Wells confessed, "it made us stronger.  Its grim... but it made us stronger."

Gerri Wells and her old bullhorn.

 

Linda Meredith followed suggesting that it was only with AIDS activism that "we realized it was ok we were queers.  Its now a model for so much research and activism.  As for the movie, she confessed she was a little disappointed.  "There were so many women who did so much treatment work not in the film."  They helped plant the seed that we could do this.  Meredith also hoped to dispel the myth that the inside outside strategy has been ACT UP's downfall.  "Its complex.  Its an inevitable thing that is going to happen once a group starts encountering some successes.

 

I was glad to hear her say that.  Before the film Jay and I had talked about the point that we are all sullied in this system to some extent.   None of us is pure.  Yet, sometimes, we had to get a little dirty to get something done.  Sometimes I wish people would be more willing to work the inside outside strategy than standing on the sidelines.  There is a utility in having people in teh streets and at the negotiating table. 

 

Jay asked that I provide a short overview of ACT UP within social movement history.  During the Indian Independence Movement, Gandhi pointed out that non-violent civil disobedience was a method in need of constant re invention and experimentation, I explained.  Over the years, countless groups build on this repertoire.   The Quakers helped stage no nukes actions.  Civil rights organizers organized lunch counter sit-inns.  And Gay Liberationists zapped the psychiatrists. 

Activists from Women's Liberation, Reproductive rights, and ACT UP built on their use of the method.  ACT UP added elements of style and theatrics to the repertoire to get drugs into bodies across the globe, breaking through barriers, challenging corporate greed.  Over the years, ACT UP helped train new cohorts of anti war activists, while supporting the Occupy Movement.  More than anything, the group lived up to Vito Russo's famous promise that after he was done kicking the shit out of this disease, he wanted to be around so he could kick the shit out this system so this never happened again.  ACT UP's contribution to this trajectory of non-violent civil disobedience was to remind the world that pleasure had to be part of process. 

Susanne Jones

 

 Before giving up the microphone, I also wanted to highlight the point that ACT UP was and is a collective, whose affinity groups drive the work. These affinity groups - Housing, Syringe Exchange, Women, Diva TV - more of them deserve attention. Others on the panel concurred.

As I finished Jay pointed out that Victor Mendolia  was one of the prime organizers for ACT UP's 1989 Stop the Church action of 1989.  He pointed out that before 'Stop the Church' no one questioned Cardinal O'Conner about his anti science stance around HIV prevention.  Afterward, the dialogue changed.  Gabe Pressman covered the opening of an AIDS hospice by the Archdiocese of New York.  He asked the Cardinal if it was not a little hypocritical to build a spaces for people to die, while condemning efforts to prevent people from getting sick.  "That kind of question would not have happened before Stop the Church," noted Mendolia. 

 

"There is another point I want to make that was not in the film," Mendolia concluded.  "ACT UP was a very supportive environment."  The group helped him feel OK about getting tested.  They also helped him enjoy living life along the way.  "It was really, really fun, supporting your whole being... even if people were dying.... you could still dance."

 

"Nobody was going to help us but ourselves," explained Neil Broome.  "There was enough positive energy to think we could get all of this done.  There were so many issues that people started to connect.  The behavior of  the government was so deplorable.  Yet, we stood up to say we were not going to take this."

 

Linda Meredith, Tony Beaudoin and several of the members of the audience chimed in that there was still a lot more to do.  We need real prevention, frank, honest non-judgmental, harm reduction based approaches to care.  Housing is prevention for people with HIV/AIDS Housing Works reminded the world this week.  The naked truth is budget cuts kill. 

 

And "Having HIV sucks," Mendolia reminded everyone.  

Photograph by  Susanne Jones

Jay Blotcher wrote on Facebook:
Thank you to the marvelous people who took part in the World AIDS Day screening of "How to Survive a Plague" at Rosendale Theatre yesterday. They are (from left) Gerri Wells, Benjamin Heim Shepard, "Plague" director David France, Victor Mendolia, Neil M. Broome, AIDS prevention specialist Tony Beaudoin and Linda Meredith. Thank you to all from the Rosendale Theatre Collective and the Hudson Valley LGBTQ Community Center! It was great to be surrounded by my veteran ACT UP comrades on this bittersweet occasion.

Stephen Gendin (February 20, 1966 – July 19, 2000)
One of the many lost AIDS warriors. 

 

Driving home, I listened to an old tape, Alphaville on one side, the Fine Young Canibals the other.  Feeling that bittersweet innocence of those dance hall anthems from the days as I gradually became aware of the epidemic, I recalled the scene from the film of the Names Quilt, of someone reading the name, "Freddie Mercury" who passed in 1990.   I put on "Don't Stop Me Now" and "You're My Best Friend" and played them over and over and loud.  "You make me live, whatever this world can give to me. You're the best friend that I've ever had," Freddie sang.  ÁIDS really taught me now important those friends would be.  Looking into the night, thinking of those days , the lusty fun, the dancing, and so many gone, I am glad to have known, its impossible not to both miss them and be glad to have felt the things they helped me feel.  They showed me so much about friendship and fun, embodied connection with something bigger than ourselves.  Remembering them is the debt I owe for all they have given me.