I spent my weekend at Paris’ Gay and Lesbian Film Festival where I found myself watching an ACT UP New Yorker’s film, full of people I once saw at ACT UP demos, some of them (many of them) dead. I’d met the filmmaker in New York, but he probably wouldn’t have remembered me. It didn’t matter. He wasn’t even there in Paris for the screening—if he was even still alive. I had the weird feeling I was watching his home movies, which were my home movies. Art had been transformed into autobiography, after all, but in a way I hadn’t expected and a lot faster. Our autobiographies were feeding off each other in a… well, in an arty way. I was paying 20 Francs to watch intimate moments from the private life of someone I once marched next to on a regular basis on the streets of another city.
What did we think we were getting done at those demos?
I went home and wrote about watching. Our post-activist “documents” or “films” or “writings” shared a certain loss of faith because they strove with such a relentless earnestness to be without having a reason to do so.
These works were just like the demos, only we now knew we were only making them for the sake of catharsis. We left our labels behind to search for death as innocuously as possible—to come to it prepared with language, symbols, gestures, or whatever cultural baggage might send us off more comfortably.
Scrapbooks of our lives.
Books of the dead.
• • •
Roach Laboratories’ Phase III Protease Inhibitor Trial Must Be Modified
It’s impossible to accept SX-1294 trial investigators’ stoic observation of their patients’ biological degradation and unexpected arrival of AIDS-defining pathology or death. It is equally unthinkable that patients accept such a passive attitude. A rigorous scientific evaluation cannot be made to the detriment of infected persons and their medical surveillance. Can someone who sees that his/her number of CD4 lymphocytes is rapidly declining and who develops oral candida be refused the right to switch to another regimen? To neither envision nor write arrangements into the protocol for patients who find themselves in such a situation is to ignore the people implicated in the trial.
• • •
Demo Line:
A list of all demos I ever attended or helped to organize, according to:
Name (FDA, Day of Desperation, Republican Convention,…)
Cause (pro-choice, anti-racism, AIDS rights, gay rights, health budget,…)
and/or
Institution fought against (Catholic Church, US Government, Lyphomed, Roche,…).
• • •
Dear Bob:
I don’t believe in speaking to dead people. I’m just writing to remember. Still, I’d like to know you’d be pleased with my words if I faxed them to you. You’d have been the person I’d have called for a second opinion, so I’d better start internalizing your critical voice if I want to keep it with me: “Hum… It’s good. But what does it mean?”
Okay, so this is the part of the letter where I’m supposed to tell you about something that happened on earth since you’ve been gone, something you’d have disapproved of:
We were at this big demo. Everyone had red and pink balloons and red and pink ribbons. Red for AIDS; pink for breast cancer. The cops told us to keep on the sidewalk. Everyone obliged. There was light chanting for a couple blocks then everyone plopped down on the lawn to enjoy the music and the sun. Yes, you would have hated every minute of it.
We decided not to stay for more than ten minutes of the vague, screechy pep-rally and headed out just as a kid with a sexy bare chest pulled up to the mike: “I’d like to have a moment of silence for Bob Rafsky who died recently in New York of AIDS-related complications.”
We got a little sentimental and turned around to hear the lull in the party. “That’s cool that he mentioned Bob,” I thought. I tried to muster some tears because that’s what you’re supposed to do when everyone shuts up for a dead person: “I miss you, Bob,” began my internal elegy. “You should be here with us now…”
“And come to think of it, goddamn it, if he was here, he’d be kicking some queen’s lazy inactivist butt screaming, ‘I don’t want a moment of silence. I’ve already been silenced by AIDS, you idiot. Now get up off your fucking asses and do something. This government is killing you and you’re wearing party ribbons and carrying balloons to celebrate it. Silence equals death!”
But now it’s you who’s dead and silent. Impossible, but true. You’d have been disappointed in me. I didn’t go back to say anything to the crowd, but then I never had your optimism.
And this is the part of the letter where I’m supposed to say, “A little part of me has died since you went away.” I could follow it up with a message about “staying in the fight,” but I guess something in me has died because I’ve no message to give. I’m not so good at screaming anymore, but since you’re gone, I’ll never have to break the bad news to you.
• • •
We contest the strict application of double-blinding in the case of clinical or biological evolution. How can a physician systematically decide on a therapeutic alternative if he/she doesn’t even know the nature of the treatment followed by the patient up until then? If biological evolution justifies a change in treatment, practice suggests that the patient be proposed ddI (Didanosine, Videx®). If intolerance to ddI occurs, practice suggests that the doctor prescribe ddC, unless the risk of intolerance interferes. Such decisions must take into account the initial random arm of the SX-1294 trial: did the treatment followed up until then by the patient include ddC or not? Unblinding on a case by case basis when treatment changes become necessary may infringe on methodological dogma; nevertheless, there will be few repercussions in the context of a trial implicating more than 140 centers, dozens of investigators and 3300 patients.
• • •
I want to act, so I write, knowing I’ll be misinterpreted, knowing I’ll probably end up doing more harm than good, knowing I may even betray my friends with these very words without trying. I look for a way to steal the moments I need to put down the next mediocre sentence, hoping it will finally break something open in the mortal routine. I write because I can’t do anything else but die, and that’s something I don’t yet know how to do.
Bob knew how to die. He also knew how to act and how to use gestures and even how to use language to push things in the direction they should go. When I last saw him in a New York City hospital bed, he was amused that journalists considered his most memorable action a dispute with Governor Bill Clinton in front of a Manhattan hotel. Bob wasn’t as serious as he pretended to be, because he knew where this was all going to wind up. Still, he died faster than any of us expected.
But when we pan way back from his coffin on the planet earth till the clouds are nothing more than little cataracts on a milky blue eyeball, what does it really matter?
• • •
Action Line:
Like Demo Line, but seen from the perspective of the actual physical actions taken on these issues:
Meeting with Chicago For AIDS Rights (C-FAR) in the basement of Chicago’s MCC.
Stuffing letters in a student conference room to promote Brooklyn College’s “AIDS Awareness Week.”
Faxing slogans to the NY Times from my temp job in the penthouse of the Hippodrome building.
Painting banners in a Washington DC Church.
Xeroxing vaccine flyers at Kinko’s Copies in San Francisco at 2 a.m.
Translating protocol modifications in an office in the Marais.
• • •
It is ethically inconceivable to conceal the trial’s precise duration from participants. According to the SX-1294 protocol, the duration of treatment is 18 months. But when the delay of recruitment is taken into account, the trial will last up to two and a half years, and for the first patients included, the total duration of treatment will be close to 30 months, nearly twice the duration for patients entering towards the end of the recruitment period. A more respectful and fair arrangement would provide participants with a choice between two options after 26 months: 1) continue with the received treatment with the possibility of continued blinding; 2) change the treatment in knowing which has been taken…