June 5 was the 30th anniversary of the first diagnoses of AIDS. It reminds us of what has, and has not, changed since 1981. Much is understood about HIV/AIDS; much isn’t. The disease can be prevented but not cured. It is no longer a killer — for those who have the money for medicine and ability to practice self-care.
That leaves out lots of people, from drug addicts to prisoners to homeless kids. In sub-Saharan Africa, the disease has orphaned three in 10 children.
Peter Jacobsen, executive director of Vermont CARES, says that of the roughly 600 cases of HIV/AIDS in the state, his organization serves about one-quarter annually, and almost every one of those is among Vermont’s poorest — earning less than $1000 a month. In 2010, the lion’s share of Vermont CARES’ $82,000 direct-services budget went to keeping those clients housed and fed — necessities without which they cannot begin to follow the medical regimens that enable them to work, care for kids or simply feel well. Ten percent was spent on “emergency assistance.” But, says Jacobsen, “For our people, AIDS is the emergency every single day.”
This in the state that pioneered civil unions. Says Jacobsen: “We do a lot of soul-searching around that dichotomy.”
The dichotomy — in which some people move toward greater inclusion and others drift further out — may be inevitable as long as there is class. But political strategies can exacerbate it — or not. So, it’s instructive to look back three decades and examine what early AIDS activists did right.
Of course, class, race and education gaps existed then, too. In the gay “community” of New York’s West Village, a designer with gym-honed pecs and an Armani suit would drink his pinot at a sidewalk café, while a few blocks away a homeless black transvestite turned tricks for drug money.
Then, out of nowhere, the designer and the hustler started finding lesions on their skin, then started coughing, wasting away — and dying. Officialdom ignored them both. To President Reagan and his Christian Right advisers, they were the same: sinners, being punished. For eight years, Reagan did not publicly utter the word AIDS.
Almost as fast as the ill fell, though, a political movement rose — one of the most passionate, smart and courageous in U.S. history. That movement flourished because of a historic peculiarity. Its members were largely white, middle class, educated and connected. But they were also homosexual, and for this they were despised.
They were, in other words, at once privileged and marginalized, powerful and powerless. And their money and connections helped make the movement visible.
But the movement’s marginalization — and grief and fury — also gave it the radical militancy that finally forced America to pay attention, fund research, and get drugs and services to patients.
ACT UP, the movement’s flagship, was not a self-help group, not a disease-advocacy community like the people who solicit money for cystic fibrosis or ALS. Led by men and women with roots in the Left and feminism, its cry for medicine and compassion for gay people was linked to a demand for universal health care and an end to all bigotry. The first AIDS activists didn’t just want help. They wanted justice.
Meanwhile, the disease-prevention strategy devised by the public-health establishment in the 1980s seemed designed to splinter any broader social solidarity. Rather than prescribing condom use and proscribing unsafe practices (there was vague language about not exchanging “bodily fluids”), propaganda advised steering clear of “unsafe” people. The world was divided in two. One category was the “risk populations” — gay men, Haitian immigrants (some of whom arrived with HIV symptoms) and drug users. The other comprised everyone else — the “legitimate” citizens. It was assumed that no respectable jobholder would ever inject cocaine, no married man would dally at the baths, no Haitian immigrant would have a baby with a native-born American.
And while adults were told to avoid sex with toxic people, youth were exhorted to “Just Say No” — to foreswear premarital sex altogether. Needless to say, this did not work.
AIDS activists rejected these strategies. Disenfranchised by policy as “victims” who would be victimizers, they embraced their outsider-ness — in the same way they had proudly appropriated the epithets “queer” and “dyke.” Blamed by preachers for their own deaths, they refused to repent for their “promiscuity.” Instead, gay activists used the sexual cultures of their communities to shape an indigenous sex education.
These grassroots educators recognized that the affections and affiliations of friendly sex, loving sex, even anonymous cruising, could be woven into a fabric of mutual aid. An inventive culture of sexual styles and acts could be mined for new, safer pleasures. And the locales of public sex — the back rooms and baths — could become the networks to promote, and eroticize, those practices.
They invented safe sex, still the only preventive that works.
Today, the responses that didn’t work are institutionalized. While abstinence education misinforms millions of American children, health ministries that receive federal aid promote the HIV-prevention slogan “ABC: Abstain, Be faithful, use Condoms.” ABC is based in part on the illusion that monogamy is a prophylactic against sexual danger. In fact, research shows that both gay and straight people are more likely to have unsafe sex — and ask no questions about HIV status — inside committed relationships than in casual encounters. One psychologist studying this phenomenon in the 1990s entitled her paper “Trust as a Risky Practice.”
The notion that the straight life is the safe life resuscitates the wheezy old theory of “risk groups,” and with it the complacency of those who think they’re not in one.
It reinforces the dichotomy that the folks at Vermont CARES scratch their heads over — between gays and lesbians making steady progress toward the center while their ailing brothers and sisters (and ailing straight people) languish at the edges.
It’s not that Vermont’s LGBTQ community is turning its back on the needy. Forty percent of Vermont CARES’ donors are gay and lesbian. But charity is not the same as solidarity. Though necessary, service is not politics. It maintains; it does not transform. And assimilation, the primary goal of today’s movement, often has the unintended effect of further marginalizing those who cannot or do not want to assimilate.
Back when death galloped through a marginalized community and most others looked away, the queer response was not to try to gain rights by assimilating into a hostile mainstream. Instead, that community embraced its radical difference. In a sex-condemning nation, activists used pleasure to empower, protect and unite. In learning how to save their own lives, they saved those who thought they were safe, too.
“Poli Psy” is a twice monthly column by Judith Levine. Got a comment on this story? Contact firstname.lastname@example.org.