Issue:  Vol. 48 / No. 12 / 22 March 2018

Book chronicles rise and fall of ACT UP/LA


Benita Roth
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There has been a spurt of renewed interest in ACT UP this year, thanks to the 30th anniversary of the AIDS activist group. Riding this wave, Benita Roth, a professor of sociology, history, and women's studies at Binghamton University in New York, has released a book, "The Life and Death of ACT UP/LA: Anti-AIDS Activism in Los Angeles from the 1980s to the 2000s" (Cambridge University Press) that reads like a gripping graduate school seminar, using archival research, participant observation, and interview-based sources to tell the group's story.

Roth, 56, corresponded with the Bay Area Reporter in an email interview.

As a graduate student in sociology at UCLA, she lived in West Hollywood, where she had grown up. She saw flyers for the ACT UP/LA Women's Caucus. A friend had disclosed his HIV-positive status to her, so she began thinking about the activism developing around AIDS.

Intrigued by what she said was "the militancy of its members, by their analysis of the injustices of the health care system, by their critique of heterosexism, and by the theatricality of their actions," she participated in ACT UP/LA for almost two years in the early 1990s.

As she noted in the appendix of the book, Roth had some sexual experiences with women in the 1980s; today she identifies as "predominately hetero" in orientation, she wrote in an email follow-up.

When asked what were the biggest successes in ACT UP/LA's activism, Roth replied, "They managed to galvanize a significant portion of the LGBT community around questions of health provision and around fighting homophobia. Among the issues addressed were challenging the Immigration and Naturalization Services policy regarding the immigration of HIV-positive people to the U.S.; protesting the reluctance of Archbishop of Los Angeles Roger Cardinal Mahony to endorse safe-sex practices and education; and speaking out against the Food and Drug Administration's slowness in approving life-saving AIDS drugs."

Roth noted the theatrical tactics that became a trademark of various ACT UP chapters that developed in cities around the country. In Los Angeles, like in other cities, the group chose iconic events to protest.

"They used theatrical tactics like stopping the Rose Parade and invading the Academy Awards ceremony," she wrote. "The biggest battles that the group fought, in my opinion, were getting a very recalcitrant LA county to cough up more money to treat PWAs, through eventually providing a dedicated AIDS ward in the County/USC hospital, and in providing more resources to outpatient clinics."

She noted that these victories were the result of protracted, ongoing struggles.

"ACT UP/LA members also raised awareness about the treatment of prisoners with HIV and women's AIDS issues," Roth wrote in the email. "Many projects were done in coalition with other groups and especially, other ACT UPs."

On a more general level, Roth credited ACT UP with countering heteronormativity and homophobia in local institutions.

The loosely affiliated ACT UP "made it clear to local elites (like the entertainment industry) that a new way of dealing with HIV/AIDS and the LGBT community needed to happen," she wrote.

The founding ACT UP/New York chapter provided a model for how to structure a participatory, member-driven organization. Roth felt the LA group was smaller and probably a bit more harmonious, with members oscillating between national actions and more local targets.

Roth uses a feminist intersectionality (defined as a method of analysis looking at the coming together of different groups and the tensions that can occur as inequalities reinforce each other, creating differences among people) to help understand the dynamics around inequalities in ACT UP/LA.

"The biggest inequalities driving ACT UP/LA was the split between the straight world and the LGBT community, an inequality that still exists," she wrote. "The lack of provision of health care to PWAs – the lack of government response to a public health crisis – reinforced that inequality and politicized it even further, and into a new realm of health politics.

"To simplify a bit, HIV/AIDS in the 1980s was an illness that one couldn't buy one's way out of by being rich, white, or male – the LGBT community was providing services but the government at all levels, the pharmaceutical companies, and insurance companies were not responding to that relative privilege," Roth added. "So LGBT solidarity and protest escalated. Once activist groups formed, inequalities had to be managed, such as gender tensions and racial/ethnic tensions. Activists will still be affected by these tensions even as they struggle to correct inequalities or mend divisions. Despite shared ideology, solidarity is always under attack by structural inequalities and these inequalities need to be managed openly. We need to be conscious of how solidarity is created, meaning whose voices are included and those that are left out."

ACT UP/LA's legacy

Roth said that one of ACT UP/LA's legacies was changing the queer community's view of what medical science should be.

"Like the women's movement before it, it questioned the orthodoxy of medical science, the role of government in health care provision, the way that medical and pharmaceutical institutions mistreated those outside the mainstream," she wrote in the email. "We are all much more proactive about health care in the wake of the ACT UPs. ACT UPs also helped us to understand that loud voices in defense of rights would be heard, and that playing nice had its uses, but so does acting up.

"Anti-AIDS activists won hard battles against government neglect, medical establishment prejudices, pharmaceutical misbehavior, and society-wide heterosexism and homophobia," Roth added.

ACT UP/LA officially ended after 1997, when its three remaining members voted it out of existence. But issues began several years earlier, according to Roth's book.

"The intersectional crises that members faced – moments during which inequalities of gender, race/ethnicity, and sexuality affected decisions that group members made about their politics, their projects, and the boundaries of their community – vitiated solidarity among ACT UP/LA members starting in 1991-1993," she noted.

Other factors that led to demobilization were the death of group leaders like Mark Kostopoulos, who against criticism promoted women organizing within ACT UP/LA, the lack of new successes in the battle with LA County and the public health department, and what might be called burnout on the part of some participants, Roth explained.

"Social movement organizations, because they are pretty uninstitutionalized, tend to have short lives," she wrote.

As an example, clean needle exchange was hotly debated, not only about its cost, but others "were skeptical about whether or not ACT UP/LA could serve largely communities of color, where IV drug use was spreading the virus," Roth explained.

Needle exchange was not legal in LA County, complicating any decision since it would have meant practicing civil disobedience.

A model for resistance?

ACT UP/LA's history could inspire people today who are actively trying to resist Trump administration policies. Roth is involved with two different grassroots organizations on the local level – one, Indivisible Binghamton, arose in response to Donald Trump's electoral victory with the express purpose of fighting the Trump agenda.

A second group, called Truth Pharm, a Binghamton-based organization, was founded to fight for greater awareness of the opioid epidemic and for the provision of greater resources to fight it in a harm reduction, non-war-on-drugs way.

"There are some striking parallels between the current opioid epidemic and the AIDS crisis," Roth wrote. "Truth Pharm makes use of the experiences of users and family members affected by substance use to challenge the medical community, the police, and the government to change policies; they use political theater to make their points as well.

"So one lesson learned from the ACT UPs is that being disruptive and visually sophisticated really works when we challenge institutions, as does a reliance on the experiences of those most affected by the crisis," she added.

In terms of Indivisible, Roth said people can learn the power of the brand name and decentralized coordination.

"Indivisible's website team is located in [Washington,] D.C., but its founders used social media (primarily Twitter) to spread the word about how to defeat the Trump agenda and let existing, as well as new, groups 'register' through a central database. Thus, there is not any real coordination coming from above, but there is a way for like-minded folks to find other like-minded folks on the progressive end of the spectrum. This is much like what the ACT UPs did, although more of the networking happened 'in real life.'"

One key to the ACT UPs early success was when LGBT folks from other communities saw ACT UP/NY at the 1987 March on Washington for Lesbian and Gay Rights, Roth said.

"They said, 'hey, those guys are cool, they have the right idea about how to fight the epidemic,'" she wrote.

Roth is adamant that young LGBTQ people should know their history.

"If you want to know how to make a difference as an LGBT person, you might want to read about how other people before you made change," she wrote.

Roth said the public should be concerned that AIDS has become a disease of the poor and to the extent that race and ethnicity overlaps with class.

"Ending AIDS rests not just on remedying access to, and the cost of, antiretrovirals, but on implementing testing regimes, ending poverty, stopping gender violence, rescinding punitive anti-gay laws, and on combating what the U.N. terms a 'low political commitment' to reducing new infections among people who inject drugs," Roth wrote.

She added, "The HIV/AIDS crisis is far from over either here or abroad and while we have learned in the U.S. to live with the disease, we haven't eliminated the ability of AIDS to shorten and immiserate lives."

Much of Roth's books details ACT UP/LA's internal struggles, which ultimately tore the group apart, but its successes shouldn't be downplayed. Roth credited anti-AIDS activists with "asking questions about political exclusion, about the realities of social inequalities and the potential for social rights, and about the meaning of democracy."

Ultimately Roth's hope is that her book "contributes to keeping alive the history of how social change is made by people who desperately need change to survive."

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