HIV in the Second City

The Great Believers, #PrEP4Love, and the limits of moral imagination.

The Great Believers, by Rebecca Makkai. Penguin Random House, 2018. 432 pp, fiction.

Within my queer Chicago circles at least, Rebecca Makkai’s The Great Believers felt like the book of the summer — a weighty queer ensemble novel chronicling the lasting impact of AIDS in Chicago. Early reviewers made comparisons to A Little Life (also penned by a straight cis women) and even Angels in America.

The Great Believers unfolds in parallel plots in 1985 and 2015, exploring overarching theme of care-taking and familial loss, both chosen and biological. The 1985 thread primarily follows a gay male friend group in Boystown affected by AIDS, focusing primarily on Yale’s dreams as he leaves a fraught relationship and starts a new curatorial job. But the novel’s central character is a straight white woman named Fiona, a sister of one of those men who passed away who becomes a friend and ally to the remaining members of the group. Set thirty years later, the B Plot tracing Fiona’s attempts to chase down her estranged daughter in Paris is weaker, though some surprising character reappearances in the conclusion tie the threads together satisfyingly.

For the most part, “The Great Believers” is potent story-telling, an emotionally gripping page-turner. Makkai’s focus on Midwest as opposed to New York or San Francisco is a welcome intervention within mainstream HIV literature. Her journalistic attention to details like closed down Chicago bars, Illinois Masonic Hospital’s AIDS unit, and an ACT UP meeting—which she revisited in conversation with gay activist and journalist Albert Williams in The Chicago Reader—makes for compelling historic fiction. Michael Cunningham’s effusive review asserted, “The Great Believers is, as far as I know, among the first novels to chronicle the AIDS epidemic from its initial outbreak to the present — among the first, that is, to convey the terrors and tragedies of the epidemic’s early years as well as its course and its repercussions over the decades. Makkai puts the epidemic (which, of course, has not yet ended) into historical perspective without distancing it or blunting its horrors.”

As it is, Makkai’s twin-plot elegantly captures a strong female protagonist Fiona confronting subsuming grief longitudinally: “Fiona had been living for the past thirty years in a deafening echo. She’d been tending the graveyard alone, oblivious to the fact that the world had moved on.” In After the Party: A Manifesto for Queer of Color Life, Chicagoan performance scholar Joshua Chambers-Letson meditates on the performance of care-work after loss as exhausting waves of emotional and physical labor. “To sustain. To exist or be with, endure, suffer, support, bear, lift up, experience, or carry. To live on…” Fiona’s grief-work throughout the book exemplifies the ways this form of labor, in its identificatory blur between griever and grieved, can be both reproductive and disappearing.

I applaud Makkai for her juxtapositions of past and present and her articulate depiction of grief, though I wonder if this time-jumping device was a missed opportunity. If Makkai’s goal is, as Cunningham claims, a novelistic chronicle from outbreak to present, The Great Believers fails in telling Chicago’s HIV story, insofar as it is represented as too white and too past-tense. For a book that attempts to reconcile Chicago’s past and present, I find the author’s limited engagement with HIV in Chicago today — and particularly, the impact of the city’s deep segregation on its contemporary course — irresponsible.

Towards the ending, Fiona briefly acknowledges this gap:

“It was so tempting to think of the fires of her twenties as being the great historical struggle of her life, all past tense. Even her work at the store, her lobbying and fundraising always felt like aftermath. People were still dying, just more slowly, with a bit more dignity. Well, in Chicago, at least. She considered it one of her great moral failings that, deep down, she didn’t care on quite the same visceral level about the ongoing AIDS crisis in Africa. It didn’t stop her from donating money to those charities, but it bothered her that she didn’t feel it in her core, didn’t cry herself to sleep over it. A million people in the world had died of AIDS in the past year, and she hadn’t cried about it once. A million people!”

Yet even here, her moral engagement and imagination of AIDS in the present tense (and, by extension of the omission, the author’s as well) is remote and continentally removed, minimizing the ongoing-ness of AIDS within her own city borders. Yes, the number of new HIV diagnoses has declined to historic lows in the city as a whole, especially in Boystown, the predominantly white, affluent, gentrified North Side neighborhood in which The Great Believers takes place. However, a deeper dive into the statistics reveals racial discrepancies: the majority of new diagnoses in Chicago are Black & Latino men who sleep with men and transgender women of color.

A recent panel in Chicago organized by Queer, ILL, + Okay (QIO) examined the state of HIV prevention in Chicago today, now that PrEP is available on the market. (PrEP, which stands for Pre-exposure prophylaxis, is not a cure, but it is a preventative daily pill that reduces the risk of getting HIV from sex. It is sometimes stigmatized within gay communities, though as one panelist heralded, PrEP is a “game-changer.”) Johnny Perez moderated a panel of HIV organizers, including Kaycee Ortiz, Joseph Rough, Phillip Lambert Jr., Bevy Ross, and Serette B. King, who bemoaned disparities in access to healthcare and information about HIV and PrEP in the West and South Side, especially in less affluent black and brown neighborhoods. As panelist Phillip Lambert stressed, “HIV is about race.”

Heated and lively debate quickly arose about the best ways of increasing access to PrEP. Contention circled around Chicago’s recent #PrEP4Love Campaign, a series of elegant black-and-white posters with notable diverse representation ostensibly targeting priority demographics. While Bevy Ross sang #PrEP4love’s praises, other panelists critiqued its hypersexualization and marketing strategies, questioning if it was truly reaching black and brown audiences in the deep South and West sides. These panelists cited instances of poster vandalism, as well as the campaign’s lack of follow-up and its failure to change the numbers of HIV diagnoses in the neighborhoods that need the information most desperately. One audience member complained that he saw his South Side neighborhood “getting pictures but not getting the knowledge.”

Image of #PrEP4love campaign poster, borrowed from https://www.aidschicago.org/page/news/all-news/citywide-campaign-transmits-love-and-shows-the-sexier-side-of-hiv-prevention.

Sexual health access and prevention is no new debate: as The Great Believers depicts, these were subjects of contention in 1985 when HIV broke out in the city. As testing first became an option, there was debate about whether or not to get tested. When an HIV diagnosis was more or less a death sentence given the lack of public information and the Reagan government’s genocidal inaction, did you really want to know your status? Makkai’s characters are divided between the responsibility of finding out their status (for personal knowledge as well as to inform partners and prevent its spread) and paranoia the government and insurance providers would track testing results for nefarious purposes. Imagine the potential resonances if Makkai’s mirror plot in 2015 had represented these parallels between HIV organizing in the 1980s and now.

The state of literature and art matters insofar as it is a representation of our collective moral imagination as well as its limits. There is nothing wrong with a historical focus in and of itself — critique of the past can illuminate corrective paths for present agendas. But Makkai’s multi-decade account limits its scope by representing HIV in Chicago as “all past tense.” If we want to find answers at home, we must pay attention to the work of HIV healthcare organizers in the present tense.


HIV in the Second City was originally published in Anomaly on Medium, where people are continuing the conversation by highlighting and responding to this story.

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