Saturday, September 20, 2014

We Were Here: Remembering the North American AIDS Epidemic

 
The title of We Were Here, the 2011 documentary about the AIDS epidemic in San Francisco tells you why it was made: a nearly cataclysmic event that changed the social and cultural landscape is about to tip into the mists of barely remembered history (at least as an event that made itself felt in North America); but a cohort of men and women were there in the eye of this vortex of sickness and death, and are here to remind you. A little like “Shoah,“ the Holocaust history by Claude Lanzmann, We Were Here takes an epic historical event and recreates it from the bits and pieces of it that were experienced by individual men and women. With the exception of Shoah, it is the best piece of oral history rendered on the screen that I know of.    

A lot, let’s face it, has happened since 1981 when the epidemic first surfaced, and some people may be inclined to think of the crisis—as many did at the time—as something that affected a small, isolated cohort of the population. In this they would be missing, and misreading, quite a lot. The most acute phase of the AIDS crisis in North America (it is still very acute in the Third World) was a hinge event, with a distinct “before” and “after.” We Were Here tells a story that straddles both sides of the hinge.

It is told through the stories of five San Franciscans, four gay men and a female nurse who worked the AIDS ward in San Francisco General Hospital. They are all now in their fifties and beyond, and carry with them the weathered wisdom of survivors. And they are all distinct personalities; together they round out a portrait of a community. They are Paul Boneberg, a political activist; Daniel Goldstein, a highly accomplished artist; Ed Wolfe, a shy and awkward volunteer at the Shanti Project, which linked the sick and dying with healthcare services, their families (where it was possible) and with home and community-based services; Guy Clark, a flower salesman who for 28 years commandeered a post at a corner in the Mission District; and Eilleen Glutzer, a bedside nurse.

Each in their own way is perfect—perfectly themselves, and telling their own story their own way, a story without which the rest would not be whole. Paul arrived in San Francisco in the mid-70s, bearded and lanky-haired (“We were just crazy dreamers,” he says over a photo of himself meditating bare-footed on the beach), but later is seen in suit and tie, clean cut (in the wide-lapelled, big-haired way of the period) being interviewed on television and demanding action from the federal government. Daniel came to the City to be an artist and because, he says, “I always wanted to meet a cute, blonde surfer.” Gregarious, big-hearted and social, he is the only one of the four men who was infected; he has seen a lot of death. “None of my friends are around from the beginning,” he said. In the earliest days, before scientists or doctors even knew what they were fighting, he participated in an experimental trial of a drug (Surinam) whose side effects were so vicious it killed a number of subjects before the trial was halted; Daniel dropped out early enough to be spared. Eilleen has a clinical view of the illness (“One of the infectious disease guys said, `why don’t you put on gloves Eilleen, we don’t know what this is,’” she recalls being told when the tide of illness was just beginning to swell) but she is loveable and warm and human (“I love bedside nursing.”) And she displays a genuine fellow-feeling for her dying patients with whom she used to go clubbing and dancing. “I think a lot of us came to San Francisco because we didn’t quite fit where we were,” she said. Guy has a street-level view of the illness from the days before and the days after. Of those days before, he recalls, “If you had a bus ticket it had better be saying San Francisco, because that was the place to be.” Ed is a most inspired inclusion; shy and awkward—and yet oddly self-possessed in his awkwardness—he didn’t fit into the high-speed, fast-lane lifestyle of the period. “I was terrible at anonymous sex,” he says, rolling his eyes.

We Were Here brings the period alive, and vividly renders the social context in which thousands of young gay men descended on the Castro, as they did in gay ghettos in New York and Chicago and Los Angeles, in the 1970s, seeking “liberation” in the only way it was understood at the time—in a vigorous pursuit of sex, presumed to be without consequence. The abandon with which young men felt free to indulge this pursuit can scarcely be imagined today; in flight from homes and communities that did not sanction anything like “normal” courtship, romance, and commitment between men, what was to be expected of them when they arrived, together by the thousands, in cities of relative tolerance and told to finally be who they were? “ “You get a whole lot of young men in their twenties and early thirties together and tell them to have as much sex as they can,” Paul says. “How much sex are they are going to have?.....A lot of sex.”

(The bathhouses, treated censoriously by Randy Shilts in The Band Played On, are given a slightly softer touch here. They were not always, or only, venues for lonely, soul-less, anonymous sexual encounters, but a kind of community gathering joint. “A big group of us, all my friends, would go together,” Daniel recalls. “We called it `going to church.’….It was fun.” In time, though, the baths were closed when evidence became irrefutable that they were vectors of deadly infection. The “controversy” that surrounded the closure—some argued along what might be considered standard conservative lines that it amounted to a state intrusion into private lives; others claimed it was a threat to gay identity, perilously founded on sexual freedom—is viewed in the documentary in the context of really more ominous efforts, such as an initiative that received serious consideration to quarantine the infected.)

It was in the summer of 1981 that the Centers for Disease Control published, in its jauntily titled “Morbidity and Mortality Weekly Report,” an article describing cases of a rare lung infection, Pneumocystis carinii pneumonia, in five young, previously healthy, gay men in Los Angeles. All the men had other unusual infections as well, indicating that their immune systems were not working; two were already dead by the time the report was published. In short order, reports came in of similar cases from around the country; some of these reports included cases of a rare cancer, Kaposi’s sarcoma, believed to be primarily a disease of aging Jewish men, now
appearing among young gay men.
In the movie, Ed describes a vivid and haunting moment from that summer, stopping at a shop window on Castro Street to peruse a handmade flyer showing photos of the infection sores that covered a man’s throat and tongue. “Watch out guys, there’s something out there,” he recalls the flyer stating. His recollection is heard over a black-and-white photo of young men clustered around the flyer; it’s clear (and Shilts’ history is especially good on this point) that there had already been a mounting apprehension in the community, well before there was anything approaching a public recognition of a health hazard. (As it happens, I was travelling through San Francisco in August the year before—I was 20—taking a bus excursion across the country and staying at youth hostels along my way. At the hostel in Fort Mason on the wharf I somewhat vaguely remember asking at the desk where the Castro neighborhood was and being warned about going there; something was going around. I knew nothing about it at all; but I was in any case far too conflicted and remember strolling past Castro Street curiously, as if I was looking up the street out of the corner of my eye; it was a lazy mid-morning, mid-week, in summer—nothing to see. What, I wonder, did I expect?)

In time, pictures of San Francisco’s dead gay men would fill page after page after page of a special issue of the Bay Area Reporter. Ed Wolfe describes his first encounters with the afflicted, working with the Shanti Project. His job was to make friends, connect them to services in the community they needed, connect them to family when it was possible (“I’d rather have a dead son than a gay one,” one father told him of his vanquished child.)   

It was a kind of leveling for him, an opening for a sweet and human soul to connect to the community around him. In a statement somehow emblematic of what may have been happening between gay men throughout the city, and in stricken neighborhoods in other cities, he said, “Suddenly, my whole way of being with gay men changed.” The Shanti Project was one of the most successful of a number of efforts to deal with the widening plague. The AIDS ward in San Francisco General would be a model—the “San Francisco model,” in fact—of wrapping around the patient not just medical care but a variety of home and community-based services. Those in the know about trends in medicine and health care may know that a current buzz-phrase is “integrated care” or “collaborative care,” or alternately “the patient-centered medical home”—in any case, an endeavor to provide coordinated primary and specialty care (including mental health care). Promoted in various ways by the Affordable Care Act and seized upon by private sector insurance companies as more cost-efficient than the traditional system of ad hoc care—a doctor here for this ailment, a doctor there for that one—it seems to have passed the tipping point of a mere fad and promises something really transformative. What may not be so well known is that the specialists in AIDS care were doing collaborative, patient-centered care 30 years before anyone gave it a name.

We Were Here recreates an era some of us can remember well. For those too young to remember, this documentary may be a revelation: how far and fast things have changed in the space of a few generations, and how much the openness and opportunities enjoyed by young gay men and women is owed to the travails of an earlier generation. That may sound invidious to some, but it seems to me that whether we like it or not, this is the way
 history works—events and circumstances are born of the circumstances and events that preceded them; the “marriage equality” movement may not have achieved the successes it has, were it not for the changes the AIDS epidemic wrought, especially in the way gay men thought of themselves. The five story-tellers of We Were Here have moved on, found new partners or are otherwise living their lives in middle-age. One wonders, knowing what they endured, whether aging and all the drama the rest of us bring to merely growing old, can even touch them now. “I can begin to envision a future again,” says Daniel, whose art work can be seen in public spaces in major cities around the country. “My spirituality,” says Guy, the flower salesman, when asked what the epidemic gave to him. “It helped me find my spirit.” When the tidal wave of dying finally, in the early and mid-nineties, began to subside with the advent of the antiretroviral “cocktail” drugs, he recounts seeing again on the street one of the many—worse for wear, but now revived—who had previously been in a wheelchair, up and walking around. “He wasn’t quite what he used to be,” Guys says. And he adds, providing a kind of coda to the entire story, “But that’s okay, I’m not what I used to be either.”