Anatomy Lessons: The Face, the Fist, the Head, the Heart
The body is a big sagacity, a plurality with one sense, a war and a peace, a flock and a shepherd.
Scars are tattoos with better stories.
—from an advertisement
Faces: What does an AIDS activist look like?
Is s/he old or young? HIV positive or negative? Black or white? Gay or Straight? Tall, short, skinny or fat? The answer is: Yes. AIDS activists are all those things. What does an AIDS activist look like? Like you. Like me.
In the early ’80s, I was young and queer. I erupted on the gay scene at the same time as AIDS. I rallied, protested and joined things.
Fists: What AIDS activists do
If you think you are too small to be effective, you have never been in bed with a mosquito.
I organized a chapter of ACT-UP in Salt Lake City, Utah. We did street theater—dying dramatically on the crowded city sidewalk (while our less thespian colleagues pressed fliers and pamphlets on to passersby.) Our most avid fan base was the local police who watched every performance carefully for us to do something arrest-worthy. Such as impeding foot traffic or “not moving,” which moved us from free speech to loitering, trespass, or some interpretation of a vague local statute. (Hence it was necessary if you fell down dead to continue twitching.)
Some of what we did seemed silly (or counterproductive) to me. We walked around Temple Square with a small squad of Drag Queens wearing aluminum foil badges that said: “Fashion Police,” and handed out tickets for “Fashion Violations.” Beside the checked fashion crime were pithy insults such as “The higher the hair, the closer to heaven.”
I joined the Utah AIDS consortium—an ad hoc group of health organizations, LGBT leaders and concerned citizens. Under the banner of a variety of organizations we marched, wrote speeches, lobbied hard for anonymous testing clinics, passed out condoms to street hustlers, and fought against the closing of bathhouses which the local Government saw as a health hazard, and we saw as an invaluable place to distribute condoms and information to an often invisible community at risk.
There was a real fear of quarantine, of AIDS camps, forced testing/reporting. It was legal to fire HIV+ educators or food service workers. Talk radio was filled with medical professionals warning that mosquitoes couldn’t be ruled out as carriers. My grandmother wept when she found out my babysitter was HIV+. How could I let my child eat food he cooked? I wheat-pasted every telephone pole with fliers. I spray-painted slogans on sidewalks. I was on an FBI watch-list. I had my phone tapped.
Heads (and Tails): What Were We Thinking?
In those early days we were tireless and inventive, but we had an energy that sprang from naiveté. I remember when the AIDS Quilt fit in a single room.
Doubt me? Rent the movie Longtime Companion (1990). In retrospect, its optimism is painful. We believed a cure was inevitable and coming soon. We thought the work we were doing would be a footnote, not a foundation. Three decades later, so much and so little has changed.
Hearts: Why to (not) be an AIDS activist
The heart is not simply suspended in a body but in a culture, a place, a time.
I lost the active in my AIDS activism in the late ’90s. I woke up one morning and realized I no longer had any friends who weren’t dying. It was too often now or never. A missed phone call or postponed dinner could be a life or death matter. I rescheduled Tuesday’s dinner and shopping with Stephen (Courtney) but three days later when I was free, he was dead.
My friend/activist David Sharpton (whose babysitting made my grandmother cry) was the longest living PWA in the country at the time. He came to Utah from Dallas less than two years after his diagnosis. We were close friends for a decade. I sneaked birthday cake into his hospital room long after visiting hours, and sat on the bed as he told me he was moving to stay with relatives since his doctor didn’t think he could survive another Utah winter and its accompanying cycle of pneumonia. (He also confessed that he wanted to leave his young lover before his care became too irksome. He felt his relatives deserved some irking. I scolded him for the vanity that would deprive him of the affection and his lover of the remaining time. But I had to wryly acknowledge that it was me and not that pretty young man sitting at his bedside. The lover was at home drinking, dancing and entertaining mutual friends at the birthday party that had gone on as scheduled in spite of David’s hospitalization.)
Maybe David was right that it was time to give his family a chance to mend fences and to heal wounds. I didn’t share his faith in his God or his family. I selfishly wanted him to stay for my own reasons. That was David’s last birthday. He was 32. He died just a few months after leaving Utah for warmer climes. I left Utah the same year.
I licked my wounds (some self-inflicted like a bad relationship; others just the stigmata of our daily mugging by a homophobic society and an indifferent—bordering on genocidal—government). I stopped writing nonfiction. I had grown too used to interviewing victims of hate crimes, etc. I was inured to death and violence. I was cold inside and went away (wrapped unfairly in a blanket of privilege that my whiteness, lesbianism and neg status afforded me) to write poetry until I grew warm again.
Footnote: This, my darling readers, is the reason why victims of any -ism are often reluctant to embrace their non-similarly disenfranchised allies. Can any gay person completely trust a straight one to fight alongside them (or any woman trust a man, or any nonwhite person trust a white one) when at any time that ally could put down their sword and walk away because it's not their fight?
I have written enough poetry and grown warm-hearted enough to hope that these 30 years have taught us: this is our fight. Every battle on every border; we must stand together. What follows are portraits of activists’ courage, struggle and triumph.
More Fists & Faces of AIDS Activists: From 8 years old to 80
In 1988, Hydeia Broadbent was diagnosed with HIV. She was three. Very little was known about AIDS in general, and pediatric HIV/AIDS was almost unheard of. Hydeia’s adoptive parents, the Broadbents, were told no treatment was possible. The only AIDS drug at that time, AZT, was not for children. Hydeia was not predicted to live past age five.
Difficulties inspired Patricia Broadbent to activism, a fervor she passed to Hydeia. Incidents, including a kindergarten teacher who sprayed bleach in Hydeia’s face after the child sneezed, inspired her to form a non-profit called Reach Out (Relieving Every AIDS Child’s Hurt is Our Ultimate Task) to provide daycare and schooling for HIV/AIDS children and their siblings.
Not only did Hydeia beat the odds, she became one of the U.S.A.’s youngest AIDS activists when, at age 8, she co-authored a book with her mother titled You Can Get Past the Tears. As a teen activist, she outshone celebrities, and even spoke to the Republican National Convention. Hydeia is currently a vibrant, articulate and healthy college student.
Dr. Gao Yaojie
In 1996, Dr. Gao Yaojie, a former gynecologist (now nearly 90) came out of retirement when asked to consult on the baffling symptoms of a woman whom Dr. Gao realized had AIDS. This consultation lead to a one-woman anti-AIDS campaign that garnered Dr. Gao a number of international awards, several arrests and continued harassment by the Chinese government.
Investigating the source of infection, Gao discovered certain central Chinese villages where poor farmers supplemented their income by selling their blood to illegal blood banks. As many as 65 percent of the villagers became infected with HIV due to unsafe blood collection/transfusion practices. Local government was more interested in covering up than cleaning up the AIDS crisis. Journalists and doctors were banned. Ignoring the ban, Dr. Gao produced AIDS education materials (at her own expense) and visited “AIDS villages” to distribute medicine and arrange for the adoption of orphans.
Rather than welcoming her assistance, authorities offered a reward to villagers (500 yuan = US $60) for reporting her presence in the area. By the time the government formally acknowledged the problem, an estimated 65,000 people had contracted AIDS from blood-selling. Dr. Gao and other activists believe the numbers could be much higher.
According to Gao, the corrupt officials who covered up the AIDS crisis are traitors to their country: “When the Japanese controlled China, some people worked for them and said exactly what the Japanese wanted to hear. These people harmed their own nation. The people who tell lies today and those who worked for the Japanese are not really any different. Those officials who encouraged blood selling should be in prison, or even executed. Look: we’ve had a blood transfusion law for 10 years! How can they still encourage the illegal blood trade? What are these vampires doing in power, why are they still alive?”