On September 5, 1991, the AIDS activists Sean Strub and Peter Staley unfurled a giant condom made of parachute fabric over Senator Jesse Helms’s Virginia home. The music producer David Geffen had given them $3000 to have it made. The men’s other compadres from the direct action group ACT UP powered a generator which inflated the condom to keep it as “life-like” as possible. The legend across the outsized sheath read: “A CONDOM TO STOP UNSAFE POLITICS. HELMS IS DEADLIER THAN A VIRUS.” The activists knew they had to be quick: their all-bases-covered research led them to believe the police would be there in around seven minutes. It took them six-and-a-half.
Helms, as Staley later recalled, had been “one of the chief architects of AIDS-related stigma in the U.S. He fought against any federal spending on HIV research, treatment or prevention.” Of gay men, Helms said: “It’s their deliberate, disgusting, revolting conduct that is responsible for the disease.”
A “a rather butch female officer,” Strub recalls today, emerged, laughed at the sight of the giant condom, then groaned she hadn’t had her coffee yet. A neighbor screamed that the men should be arrested. Another policeman called Helms himself, then on the Senate floor, who said he didn’t want the cops to arrest any of the activists because it would only give them the media attention they craved. What he didn’t know was ACT UP had already informed the media, and CNN was capturing it all.
Strub laughs. “Helms never passed another piece of anti-gay or anti-AIDS legislation after that.” Strub is now 55, and still as impassioned and handsome as the photographs of his 32-year-old self from that day. Then his hair was dark and he was wearing a famous Silence = Death t-shirt; today, the temples have grayed and he is in a dark sports jacket, skinny jeans and crisp white shirt.
His memoir Body Counts: A Memoir of Politics, Sex, AIDS and Survival, relates not just the dramatic life story of one of America’s leading AIDS activists and founder of the magazine Poz, but also, for a younger generation who may not know, how he and others fought to increase public awareness and counter bigotry in the much darker 1980s and 90s.
Strub grew up in a religious, Catholic home in Iowa City, the third of six children. “Because of my father’s devotion to the Virgin, all my three sisters were called Mary,” he says. His mother was an orphan who had been raised by nuns. There were prayers before meals and regular Sunday mass attendance. At 13, he was sent to a Jesuit boarding school. “I was the second son, a candidate for the priesthood, which I briefly felt I had a calling for, although what that really was was an escape hatch so I wouldn’t have to answer questions about girls.”
His wasn’t “a Leave It To Beaver family,” Strub says. “How could I be close to my parents when I felt so alienated from them?” He was quiet, precocious, and was criticized by them for being too much of a bookworm; they would buy him exercise equipment for his birthday. “I saw nothing in my life that reflected who I was.” Only on his paper-round did Strub find inspiration, delivering newspapers to the wives of the city’s university professors, many of who were progressive feminists, and would become his first mentors.
The seeds of Strub's activism were sown as a child, when he snuck out of the house to watch May Day riots in Iowa City. “I’ve always been attracted to being somewhere where something is going on,” he says, combined with having “a sense of responsibility” that came with helping raise his younger sisters—changing their diapers when he was 5, making their packed lunches and attending PTA meetings by the time he was 11.
Strub’s parents kept a hidden copy of Everything You Always Wanted To Know About Sex (But Were Too Afraid To Ask) by Dr. David Reuben in their bedroom. The young Strub read the “bits about homosexuality over and over again —that gays were destined to live lives of loneliness.” Such reading sated his intellectual curiosity. “I didn’t really apply the word to myself till I was 16.” That year was the last time he avidly prayed, “and it was that my homosexuality would go away.”
In adult movie theaters Strub watched gay porn to “see if men could have intercourse and it was a surprise to see them actually enjoying it.” He finally made out with another guy when he was 18 and began calling himself bisexual. “I enjoyed women, but saying I was bisexual was less daunting than calling myself homosexual, which I really was. Every career ambition I had required me to be heterosexual.”
This closeted-ness Strub gradually shook off when at 18 he moved to Washington, D.C., where he “dreamt of running for office, running campaigns.” He became involved in Democratic Party politics but became depressed at the level of hypocrisy he encountered. There would be suppers and lunches full of gay men, he recalled, “who were campy and talking about sex, but as soon as the subject of gay politics or equality came up they would be quiet.”
To be “authentic,” Strub moved to New York, where he worked as a fundraiser for a number of gay organizations. An inveterate networker, he managed to get Tennessee Williams as the chief signatory on one letter-writing campaign. Later, Williams regaled friends of Strub: “This is the man I started the gay rights movement with.”
“There was a big disconnection between what the media said—death was inevitable—and people actually living with HIV.”
It was a tumultuous time: there had been a number of ground-breaking victories—in 1973 the American Psychiatric Association had ruled homosexuality not to be a mental disorder, some cities had passed ordinances banning discrimination based on sexual orientation—but for these crawls forward, there were anti-gay campaigns run by the likes of Anita Bryant in Florida. Harvey Milk, the openly gay city supervisor in San Francisco, was assassinated in 1978.
One thing the gay rights movement did not want to do, says Strub—indeed still remains nervous about talking about—was gay sex and the sexual culture of backrooms and bath-houses that had bloomed. When AIDS emerged in the public sphere in 1981, Strub says, “it was seen as better to view it as a mysterious agent coming to destroy us, giving us the excuse not to be introspective about the sexual community we had created. To even use the word ‘promiscuity’ was a really risky thing to do, as promiscuity had become synonymous with gay liberation itself.”
In New York, Strub met other activists like Staley, Richard Berkowitz, Michael Callen and Vito Russo, later to become famous as the author of the wonderful The Celluloid Closet, a survey of gay and lesbian characters and images on film.
Strub recalls that in 1981 he suffered from the first symptoms associated with AIDS (HIV had not yet been identified as a virus): night-sweats, weight loss, and swollen lymph glands. But the attitude of doctors was that if the lymph glands were swollen it was a good sign of a body fighting infection. They were watching patients die quickly, and Strub seemed healthy.
Older men he didn’t know seemed to the ones dying in those early years, Strub recalls. 1983 saw the first jolting death in his circle—a male model called Joe Macdonald. Strub's then-roommate had slept with both Macdonald and Strub. Two other men Strub dated died in 1984. “That was my wake-up call,” he says, “although I don’t remember the first time I used a condom and I wasn’t 100 percent compliant.” Strub himself was diagnosed positive in 1985 (he believes he had been positive for five years before this). “My doctor had tears in eyes, and said ‘Look Sean, you can have two good years left.’”
Strub put his home on the market and started winding up his affairs. His parents prayed for him. “So many people were dying by then it wasn’t that a peace had to be made with it.” He became involved with the People With AIDS Coalition, which, given the level of government inaction and prevailing bigotry, provided a focus for support and research. A decision was taken by the Reagan administration, with its homophobic ballast of Moral Majority conservatism, to “let us die,” says Strub. “That was actually stated. AIDS was seen as a way to flush out the undesirables.” The president didn’t mention AIDS publicly until 1987. Funding for AIDS research was pitiable, the bigotry leveled against gays and people with HIV all-pervasive. Those with the virus were suffering and dying in awful conditions against a toxic backdrop of vindictive condemnation and cruel indifference.
“There was very little to be done for you,” says Strub. “A lot of doctors wouldn’t treat you. A lot of funeral homes wouldn’t take your body. It wasn’t just the straight world. Gay men could be pretty ugly. Partners would suddenly leave positive partners. At one dinner party in the Village, one guest who everyone knew was positive went to the washroom. Afterwards the host discreetly replaced the washroom’s linens, and then used boiling water for his dish and utensils. I thought it it was overkill, but I was also afraid.”
Strub was “conscious of how people would react to me: they would drop me, not touch me.” At one family meal, he speared a piece of food from someone else’s plate, and that person would not eat anything else from the plate. If there was a new baby in the family, I knew I couldn’t ask to hold it.”
His activism sustained Strub. Be-suited, he was arrested outside the White House at one demonstration in 1987, “a milestone, as it symbolized my young adulthood dreams and ideas. I was scared, defiant and proud all at once.”
Of the ACT UP demonstrations, “the most memorable and controversial” he attended was at St. Patrick’s Cathedral in December 1989, against the homophobia and anti-condom attitude of John Cardinal O’Connor. Strub notes the names of those arrested inside the Cathedral that day—many Irish and Polish—implied many had a Catholic upbringing themselves. “If the Stonewall Riots in 1969 had been the first gay pushback against the civil code used against them, the St. Patrick’s demonstration was the first time gays had pushed back against religion.”
Strub had lived beyond the two years estimated by his doctor. He took the highly toxic AZT, and products from the New York Buyers Club (the Manhattan model of what was recently evoked in the Matthew McConaughey film Dallas Buyers Club). Strub tried acupuncture, a macrobiotic diet, visualization: “I knew there was a big disconnection between what the mass media said—death was inevitable—and people actually living with HIV and AIDS and my desire to get on with life.”
Strub tried dual drug therapies in the early 1990s. In 1990, political cylinders still firing, he ran for the House of Representatives to represent New York’s 22nd congressional district. He won 46 per cent of the Democratic primary vote and was the first openly HIV-positive candidate for federal office in the US.
In 1994, Strub discovered his first Kaposi’s sarcoma (KS) lesion on his hip. He knew only to be really worried if the lesions attached themselves to internal organs. He began chemotherapy and took drugs to combat the KS, which made him feel sick.
“It was an incredibly exciting and fulfilling period,” he says. “I no longer cared about material ambitions.” In 1994, he founded Poz, “for people with AIDS to share their stories and connect with each other. I wanted to show the range of lives being led.” Around the same time, he almost died. “I didn’t think I’d live long enough to see Poz become independently viable, but I was determined to live long enough to see it earn respect.”
The magazine was stylish and sharply edited, and Strub accrued a roster of celebrity supporters, including Lily Tomlin, Judith Light (“who has done so much for equality and is rarely credited for doing so”), and Yoko Ono, whose grace and un-diva-ishness he praises. Coincidentally, he was one of the first people on the scene at the assassination of her husband John Lennon in 1980. (Strub also relates wonderful stories in his book about becoming friends with Gore Vidal, and pissing out of a window with him while visiting Vidal's home in Ravello, Italy.)
Strub survived long enough to take the first generation of triple combination drugs in 1996, which have proved transformative for those with HIV. He smiles ruefully, “Back then we joked that the prescriptions should also come with prescriptions for fresh underwear. These horse-pills gave you projectile diarrhea.” His health improved, the KS lesions faded and Strub bought a home in Pennsylvania.
The cover of his memoir shows him kissing a former partner, Michael Misove, who died in 1988. “I didn’t expect to have a serious relationship after that. I expected to die.” But in 1992, he fell in love with his partner Xavier Morales “in a sleazy bar—and I don’t want to sound like a 13-year-old schoolgirl but as soon as we touched I felt an electricity.”
The couple broke up after Strub’s health rallied: “The relationship changed. Until then, Xavier had cared for me. Any ambition he had for himself was secondary.” They reunited six years ago. Strub relishes their rural life in Milford, Pennsylvania, their “connectedness to nature,” there, and chickens, dogs, and ducks they have kept. “When we first saw the property, I smelled the air at a waterfall we walked to and I knew in an instant I had to be able to breathe that air whenever I wanted to.”
He sold Poz in 2004, and began renovating old houses, but missing activism and working in policy, founded the Sero Project, “focused on ending inappropriate criminal prosecutions of people with HIV for non-disclosure of their HIV status, potential or perceived HIV exposure or HIV transmission.” “It’s not social conservatives or religious bigots stigmatizing people with HIV and AIDS now, but our justice and health systems,” says Strub.
He is similarly castigating towards public health education for young people around HIV. “Just saying ‘wear a condom’ is white noise. You’re never going to inspire the same fear as we had in young people today. You need to tell them about sexual health in a responsible way while affirming their sexuality. Why not state gradations of risk? That the most dangerous thing to do is have unprotected receptive anal intercourse. We need to convey that acquiring HIV is a life-changing event, the drugs are expensive, and it will screw up your life in so many ways. But if you are HIV-positive you can also have a wonderful life.”
The biggest obstacle to effective HIV testing and treatment is stigma, Strub says: both social and self-imposed. “Creating networks of support is the most important thing,” he says. When I ask how he feels about ageing and his mortality now, Strub smiles. “Every day is one I didn’t plan on having. I’m not looking forward to dying, but it will happen to all of us and will happen to me. But right now I am as driven as I have ever been.”