AIDS is the Antagonist and the American Government is the Villain

Pulitzer Prize finalist “The Great Believers” by Rebecca Makkai is a portrait of activism

The Great Believers maps out the devastation wrecked on the community of Boyztown in Chicago by the HIV/AIDS crisis in the 1980’s. Rebecca Makkai’s work is empathetic, rich, and layered, performing several storytelling feats: the novel is simultaneously a fictionalized history, a story about community and friendship, and a timeless allegory about wars on the personal front and the national scale.

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The book is what I lovingly like to call a doorstopper, but it earns every one of its pages, training a microscopic eye on the specifics of relationships between individuals, a community reacting to an onslaught of horror buffered by large scale government negligence, and scanning outwards to histories of art during World War I and a mother’s search for solace in modern day Paris.

Though the lines one can draw between the HIV/AIDS crisis and the present moment are, unfortunately, numerous, perhaps the most important lesson we can draw from The Great Believers is its portrait of the resistance tactics of direct action: whether you’re familiar with the practice or this is your first introduction, this book will, in Makkai’s own words, “have the voices ringing in [your] ears of people who know how to fight.”

Rebecca Makkai and I spoke on the phone about writing the story of a community, the greedy sadism of big pharma, Ronald Reagan’s betrayal and the difference between activism and advocacy.


Rebecca Schuh: I’m sure you get this a lot, but I was sobbing, I kind of had a meltdown at the end of The Great Believers.

Rebecca Makkai: Well, thanks, you know, sorry not sorry. I needed to be getting to that point myself as I wrote it or I would know something was really wrong. So I was right there with you. It just feels manipulative if you’re trying to get that reaction from someone else but it’s not coming from something you genuinely feel.

RS: Throughout the novel I was very impressed with your ability to have this intimate portrayal of lives wherein death is very much on the horizon. That’s kind of always true, but you really aren’t forced to think about it until you or your family or your friend group goes into a time of crisis.

RM: Certainly we’re all facing our own mortality in one way or another. But one thing that was really interesting to me about the psychology in this book was that it’s an entire generation, or within their group it’s their generation confronting mortality together. That really doesn’t normally happen except in times of war. The parallels between the AIDS crisis and World War I were really interesting to me: not only what happens when an entire generation is decimated, but then how do the survivors move on?

RS: How were you able to portray how the psychology of how the AIDS crisis affected the community as a whole?

RM: My understanding of that psychology came from interviews I was conducting, which was one of the main ways I did my research. Talking to survivors, talking to doctors and nurses and activists and lawyers and all kinds of people who had been on the front lines back in the eighties and many of whom still are on the front lines. You start to get this sense of the collective consciousness. This is in many ways a book about community and you need to have approached that community from many angles and talk to many people for it to truly start to really understand what was going on.

I was also really interested in primary source documents, like gay weeklies from Chicago in the eighties, which helped me understand how people were viewing the core issues at the time versus in retrospect. The book begins in 1985 which is the year the test came out, and it’s very easy to look back and say, “Oh, yes of course everyone should have gotten tested,” when in 1985 that was not that clear at all. There was a lot of concern about how the results would be used, there were questions about it’s accuracy, and there were questions about why would you want to know because there’s no medicine. So going back to those primary source documents, you get a sense through op-eds and through letters to the editor, of what the lines of thinking were within the community and the different ways people were coming together. I had to really understand the texture of all those points of view before I could begin to write a story about that community.

The parallels between the AIDS crisis and World War I were really interesting: not only what happens when an entire generation is decimated, but then how do the survivors move on?

RS: Most of what I’ve read about HIV/AIDS is after the newer drugs came to be, so it was illuminating but also tragic to read about what it was like when nobody knew if effective treatment would come one day.

RM: You’re waiting on the luck of science, you’re waiting on is there a cure out there, is it some plant in the Amazon, what are we going to do, but also tremendous despair about the fact that the government was not spending nearly enough money on research.

It’s not only the question of is there treatment out there to be found, but are they even going to have a chance to find it? One of many tragedies is that they found AZT, which was flawed but was the best thing by far they had going. AZT was approved in 1987 and when it was introduced it was the most expensive drug ever produced, for no good reason at all. It’s not that it’s made of solid gold or something. If it were, it would be cheaper. It was pure sadism and greed.

Whenever you’re writing historically, dramatic irony always comes into it in terms of the reader knowing more than the characters. Not because someone is lurking behind the character, not that kind of irony, but we have the vantage point of history. We’re reading, and I’m writing, knowing that effective medication is coming, and knowing that if these characters are able to last that long they’re going to be okay, but of course they have no idea, and it doesn’t matter whether they did or not because they have no control over whether they’re going to make it to that point in time.

RS: While I was going through my notes in the book, I had a long-forgotten memory of when I was in high school and the swine flu was going around and there was a really hysteric national attitude surrounding it. I remember my art teacher getting really upset, saying “look they are freaking out about this, I remember when AIDS was killing incredible numbers of people and there was none of this, there was no coverage, there was no statements,” and I realized later how intentional that was on behalf of both the media and the government.

RM: Oh absolutely, and Reagan did not say the word AIDS until the fall of ’85, possibly later depending on how you define publicly. If you’re thinking about a speech or a press conference, it’s actually later in time. It was very calculated, he was afraid of how he looked to his base, and he was afraid — he was an actor coming out of California, he had friends who were gay, it would have been the kiss of death for him at that point in that political party if people had assumed that his sympathizing meant that he himself was gay or that…who knows what was going through his head. We’ll ultimately never know. But, he’s someone who certainly knew what was going on, not only because he was being briefed on it but because he knew people. The Reagans were friends with Rock Hudson, who died in the fall of ’85, and still he does nothing. It was a predictable but massive betrayal from someone who you might have hoped for more from, though most people knew better than to have more hope than that.

RS: Hearing you talk about going back through the alt weeklies and all the direct news research you did, did that inform the plot line of Charlie being the editor at the magazine?

RM: Yes, very much. I try to stay really true to details on a granular level in Chicago, but one of the things that I felt I needed to reinvent was the gay press scene so that I could have Charlie as that editor without it being a characterization of an actual editor of a magazine.

I think my interest in the gay press and why I put Charlie there to begin with was one of my first real deep dives into research. I’m looking at these newspapers and I’m really thinking not just about what’s in them but about how they were put together. The decisions that were being made behind the scenes, and the position of influence and responsibility that these editors had within the gay community, because as you said, at this point, 1985, it’s really not being talked about on the news. You’re not going to turn on NBC and see prevention tactics. You’re not going to get educated on how it is actually spreading and what you can do. All of that information was coming from the gay press and other grassroots sources in the gay community. Editors were out there on the front lines really taking stances on education, on safe sex, on many other things, often disagreeing with each other.

Advocacy is not enough. You can’t just sit there and vote for the right people and think you did the right thing. You’re supposed to be out there in the streets fighting.

RS: I’m almost seeing a parallel to the whisper networks of women exposing abusers that go around communities. I live in New York and there’s a lot going on with that right now, even in my friend group, the Shitty Men in Media list and how people had to develop these alternate networks to communicate information that was not able to be communicated on any mainstream platform.

RM: Yeah, that’s it, and of course then what happens is that there’s a lot of opportunity for misinformation, which there was plenty of going around. Most of it was spread by sources outside the gay community, but, you know that trickles in and there were certain members of Yale’s circle who got tremendous misinformation, absolutely to their detriment, like someone saying in the book “oh he must be safe because he doesn’t do all that stuff with needles and alleys.” That assumption that you have to be engaged in really extreme behavior for there to be a consequence which is of course not remotely the case.

RS: Even now, I feel like I end up having this conversation a lot about STDs in general! When I was younger I was incredibly paranoid so I did an immense amount of research about how things are communicated, and you find that many adults now still don’t really get it, they have the same assumptions. All the women I know, we talk about how many men still refuse to wear condoms. It’s 2018! We have access to this information!

RM: I was born in 1978, I get to high school in the early nineties. And by that point, if it had sunk in to no one else, it had gotten to the sex ed teachers. For my generation, sex ed was nothing but HIV prevention. It was constant. You’d talk about safe sex every day, every assembly. It was certainly born out of fear but in the best way I think, one of the healthiest responses to fear that we had at that point. It’s worrisome to think that that might have dropped off. You really worry about schools with the abstinence only education who really aren’t getting this information whatsoever which is terrifying.

RS: There was a point where Asher was talking about the difference between activism and advocacy, and I was wondering if you could just answer that question, what is the difference between activism and advocacy?

RM: What he meant and how I define it too, is that activism is really being out there either literally or figuratively in the streets. Organizing, demonstrating, protesting. I love the humor with which so much of that activism was done in the eighties with ACT UP and other organizations. Asher has this red ink stamp in his car where he stamps all his money with the words GAY MONEY, which was a real thing people did. It was from a a few years earlier, but it was to prove a point about economics.

Advocacy is more of a lifestyle, voting certain ways, speaking up when it’s appropriate, living your life in a way that supports certain causes and certain people that you believe in. I think Asher would say that advocacy is not enough, that you can’t just sit there and vote for the right people and think you did the right thing. You’re supposed to be out there in the streets fighting. Other people in the book have different approaches.

RS: I loved getting the opportunity to even learn more about direct action through this lens, most of my social circle is comprised of leftists, we talk about direct action a lot, but I’ve found that looking at history, ACT UP is one of the only times that I found that implemented it in such staggering ways.

RM: So much of what we know about successful direct action comes from ACT UP and the survivors who are with us, we need to be aware of what tremendous sources they are. These are people who, most of them did not come from activist backgrounds. Some of them had been involved in activism, civil rights activism, before the epidemic hit but so many people, like Yale in the book, they were busy living their own lives and they weren’t out there protesting until they realized they needed to be out there fighting for their lives and fighting for the lives of the people they loved.

There’s also the fact that many of these people were fighting when they were sick and it was very hard for them to be out there because of physical illness. Then there were people who had everything to lose, because in certain situations to be seen protesting was to out yourself. To be wearing a certain t-shirt at a certain rally, you’re not only outing yourself as gay but as positive.

A lot of my research was going on through late 2016 and early 2017, and really what’s gotten me through these past couple of years of American politics is this sense that I have the voices ringing in my ears of people who know how to fight, and I’ve learned something from them about how to fight.

AIDS is the antagonist, the American government is the villain.

RS: That’s beautifully put in this dark dark time. Something I was really struck by in the novel is that there are several characters, whom I won’t name, who come off not very well, as the baddies of the story, but something I found so admirable about how you portrayed it is it’s pretty obvious to any astute reader that they’re really not villains, they’re just people who did things in a time where the consequences for somewhat amoral actions were incredibly outsized.

RM: I really want there not to be a villain in this novel, or an antagonist. AIDS is the antagonist, the American government is the villain.

However, I did not want everyone in this book to be a saint. That would be unrealistic and disrespectful. I had a lot of concerns about writing across difference, and I think that one thing people tend to do when writing across difference is to be so scared that they deify everybody to the point that everybody is a magical and wonderful and glow in the dark. I needed real human flawed people who are going to make mistakes. When you’re looking down the barrel of a figurative gun, some people are going to act with super human selflessness and some people are going to act tremendously selfishly.

RS: There’s this point, I think when Yale and Roman are at Nora’s house and Roman is getting a little choked up about the romance of the fated lovers. Yale reacts with this scorn like “Oh it’s so romantic how these horrible things are happening?” I thought that was a great passage. The book itself is right on that cusp. It is a beautiful epic and it is this tragedy and it is showing the beauty in times of horror but it is also exposing the other side, that there is nothing beautiful about it at all.

RM: I certainly wanted to resist any romanticization of illness or death. There’s a lot of beautiful, important art about AIDS. There’s also a certain genre of nodding at AIDS that can bother me, it seems to be more commercial things that are less 100% about AIDS. In movies for instance, where AIDS is a subplot, people’s deaths are very sanitized, a little bit romanticized, it’s always like someone goes into the hospital and the bed is empty. And we aren’t seeing what actually happens or any of the nastiness of this disease. I really wanted to avoid that kind of angle, where people’s deaths might feel symbolic or somehow stylized or romanticized in any way.

At the same time I am trying to show beauty and I am trying to show humor in the midst of all of this. I am trying to show the humanity that people showed and held onto. That line is a little bit me poking at myself I think, like “hey watch it, keep an eye on this one.” And maybe winking at the reader a little bit too, like “hey let’s not get carried away with the romanticizing the death of innocents.” We should be talking about it but it’s not there for our aesthetic use. It’s something to be talked about directly and honestly.

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