Holding Your Identity Lightly

THE CITIZEN SCIENTISTS AND THE AIDS CRISIS

In the 1990s, a group of New York AIDS activists known as the Treatment Action Group lived with a ticking clock—friends and lovers were dying at a devastating rate, and most of them carried the virus themselves. When the depressing news hit in 1993 that the drug AZT was no more effective than a placebo, it sparked an important update. Previously, they had been pressuring the government to release promising drugs immediately, skipping years of testing. They now realized that had been a mistake born of desperation. “I felt I learned an important lesson,” said member David Barr, “which is that as a treatment activist, to the greatest extent possible, let study results determine the policy positions I support and for which I advocate. My hopes and dreams and fears should not guide that which I advocate for.” Their new mandate became: Get the science right.

None of them were scientists. Barr was a lawyer; others worked in finance, photography, or screenwriting. But they were extremely motivated learners. They started with Immunology 101 textbooks, meeting weekly for what they called “science club,” giving each other assignments and compiling a glossary of unfamiliar jargon. They also dove into the politics of government research, learning how funding was structured and how drug trials were conducted. The disorganization alarmed them. “It sort of felt like reaching the Wizard of Oz,” said activist Mark Harrington. “You’ve gotten to the center of the whole system and there’s just this schmuck behind a curtain.”

The more they learned, the more they understood that their current brand of activism—attention-grabbing protests like blocking traffic, chaining themselves to politicians’ desks, or even enshrouding a senator’s house in a giant condom—wouldn’t be enough. To improve how drugs were developed and tested, they would need to work from the inside, collaborating with bureaucrats and scientists at the National Institutes of Health. That decision was unpopular among fellow activists still furious at the government’s sluggish, apathetic response. “There was this sort of pseudo-analogy that the NIH was like the Pentagon or something—that we shouldn’t meet with them and that they were bad or evil,” Harrington recalled. The shift was bittersweet; by “crossing over” from outside the structures of power to inside, they sacrificed some ideological purity. Harrington noted, “I knew that we would never be so pure and fervent in our belief that we were right, because we were actually going to be engaged and, therefore, be more responsible for some of the things that actually happened.”

That willingness to relinquish ideological purity paid off. The “citizen scientists” became so knowledgeable about cutting-edge AIDS research that NIH scientists soon took their proposals seriously. One proposal, for a “large simple trial,” came from activist Spencer Cox, who had taught himself study design. With a large enough patient pool, the study could yield answers about a drug’s effectiveness in months instead of years without sacrificing rigor. Having gained the Food and Drug Administration’s ear, they persuaded the FDA commissioner to take their study design to drug companies, which agreed to test the latest AIDS drugs using a modified version of Cox’s design. At a medical conference in January 1996, the results were dramatic: one drug kept viral loads below detectable levels for up to two years, and another reduced mortality by half. In combination, they represented a stay of execution. As Spencer Cox stared at the slide, his eyes welled up with tears. “We did it,” he said. “We’re going to live.” Over the next two years, AIDS mortality in the United States plummeted by 60 percent. The tide had finally turned.

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Cooperation with government scientists was what ultimately reversed the spread of AIDS, but holding your identity lightly doesn’t mean always choosing cooperation over disruption. Those early, disruptive protests played a crucial role in making the public aware of AIDS and pressuring the government to devote more resources to fighting it. To be an effective activist, you need to perceive on a case-by-case basis whether cooperation or disruption will be most impactful.

This capacity for judgment depends on holding your identity lightly. Doing so doesn’t mean thinking of your identity as a central source of pride or meaning, a flag to be waved. Rather, you treat it in a matter-of-fact way—as a description, not a declaration of tribal allegiance. A friend of mine named Ben used to identify as a feminist. When he heard arguments against feminism, he felt his tribe was under attack; he grew defensive and couldn’t resist jumping into unproductive arguments. So Ben decided to hold the identity more lightly. He still usually answers “yes” when asked if he’s a feminist, because that label describes his views accurately enough. But internally, he now thinks of himself as a “person who agrees with most ideas that are part of the feminist consensus.” It’s a minor distinction that feels different from the inside. “I have an easier time approaching these debates on their merits, so I’ve changed my mind on a small number of issues,” Ben says. Crucially, it squashed his “Someone is wrong on the internet!” impulse.

This same lightness applies to political identities. Someone who holds her political identity lightly is happy when her party wins an election—but because she expects her party to do a better job, not because the other side suffered a humiliating defeat. She isn’t tempted to gloat over “right-wing temper tantrums” or “liberal tears.” She treats her identity as contingent, telling herself, “I’m a liberal, for as long as liberalism still seems just,” or “I’m a feminist, but I would abandon the movement if I came to believe it was causing net harm.” It means maintaining a sense of your own beliefs and values, independent of the tribe’s, and acknowledging—at least privately—the places where the two diverge.

Holding your identity lightly isn’t a favor you do for others, for the sake of being nice or civil. It’s a favor to yourself: a way to keep your mind flexible, unconstrained by identity, and free to follow the evidence wherever it leads.