Plague, Politics and Parties

A Q&A With Author and Activist Anne-christine d'Adesky on Her 1990s AIDS Memoir The Pox Lover

Contributing Editor
Anne-christine d'Adesky
Anne-christine d'Adesky
Juno Rosenhaus

Anne-christine d'Adesky, 59, has led (and continues to lead) a whirlwind life. She's the author of the novel Under the Bone and the nonfiction Moving Mountains: The Race to Treat Global AIDS, co-producer of the documentary Pills, Profits, Protest (also about global AIDS), cofounder of the Lesbian Avengers activist group, cofounder of WE-ACTx (which helps Rwandan women with HIV/AIDS) and cofounder of the magazine HIV Plus. Also, she's been heavily involved with AIDS activism for more than 25 years in New York City (ACT UP), Paris (ACT UP Paris) and Haiti, where some of her French-descended family is from.

And that's just some of her bio. Now, she's in the spotlight again with The Pox Lover, her novelistic memoir of being an AIDS activist in the 1990s, primarily in New York and Paris. The book skips back and forth across the Atlantic, covering a full decade of demonstrations, research and treatment efforts, caring for sick friends, lesbian community building (and romantic drama), the rise of right-wing politics in France and a great deal more. Add to all that a seedy, crone-like muse named Sel haunting the banks of the Seine, which d'Adesky claims started talking to her at the beginning of the decade, and it all makes for a decidedly unconventional account of the decade when everything both did and did not change when it comes to HIV/AIDS treatment. The Body.com chatted at length with d'Adesky.

Tim Murphy: Anne-christine d'Adesky, you've led quite the packed life. How did this book evolve? From diaries?

Anne-christine d'Adesky: Yes, it's based on my actual diaries between about 1992 and 1999. I didn't keep daily diaries, but I kept pretty regular ones. And these diaries began as a bit more than personal ones, but actually for research. I began to have a kind of visitation, a voice that came into my head when I was in Paris. I was in grief, coming out of a long, difficult breakup, and I had two or three friends who were really sick with AIDS, including my friend John Cook who went blind, and I was one of his caretakers. And I was a science journalist and also in ACT UP, so I was wearing all these different hats. I started researching different questions coming into my mind at the time. Everything going on turned into a reflection as a citizen, a person of the world, asking myself, "What is my role in and my responsibility to this?"

And that included both contemporary history but also the roots of it, so I wanted to know more about the culture of my own French family. I suddenly felt like in the '90s we were in a moment that ... I mean, how could there be a resurgence of the right in France with Jean-Marie Le Pen? Were these the old wolves of the 1940s Vichy government who'd collaborated with the Nazi occupation?

TM: So, I'm still a bit perplexed by the muse of Sel and her friends who show up in the book quite a bit. What do they mean to you?

ACD: Well, at that time, I was very emotionally in heartbreak, talking to myself a lot, and I was walking in Paris at night because I had insomnia and couldn't sleep. I had friends who were going down [with AIDS] and I was trying to figure out how to get access to new drugs for them. I was walking along the river all night, kind of like in a dream, and I began to hear a voice. I was always stopping on benches and closing my eyes to better hear it. And the voice's name was Sel, which means salt in French. If you want to get psychological, I think she's a part of my inner psyche, who was much more liberated than I was at that time and let me think thoughts that were less politically correct. For example, I began to look into the Holocaust and my family's own role in the resistance. Sel is a very marginal persona. I would think, "Is this going to be my future crone self?" She becomes a metaphoric character for someone who in many ways embodies impurity and really embraces impurity and the things we fear. That paralleled my engagement in the world of people who were very sick and constantly facing death.

TM: Why did you focus just on the '90s? What about the '80s? HIV/AIDS-wise, how would you distinguish the '90s from the '80s?

ACD: I chose the '90s because the book would have been 2,000 pages if I had included the '80s as well. This book happened because I had this inner voice of Sel that pushed me to take on investigative lines of research. My '80s diaries are very personal but are less cohesive narratively. I became the activist that I am in the later '80s. By the early '90s, I was freer to wear the dual hat of journalism and advocacy. There's a canard of journalism that it's impartial. The truth is that you seek to be fair, but this concept that we are objective is absurd. Everything about us betrays our subjectivity -- whom we choose as our sources, our audience, our privileges that give us access. Multiple truths exist at the same time, even while there are facts that stand, such as the events of 9/11.

But as for the '90s, I think they were more of an application of responses to the epidemic. The '80s were about us coming together as a community, identifying who the enemies were, and the '90s were applying that, developing alternatives to the absence of a response from the federal government. In the '80s, we were still learning what AIDS was and who was impacted. We were learning to give palliative care, basically.

TM: You went back and forth so much between Paris and New York in the '90s. How would you describe the biggest difference between the two cities?

ACD: In terms of the response to AIDS, you have very different LGBT and feminist movements. There was more of an openly gay identity in the U.S., and that informed the shape and the narrative of ACT UP. France had leftist and secular, labor rights-oriented progressive social movements, and they had anti-colonialist movements. So, ACT UP Paris had people seeing what was happening in New York and swallowing whole the slogans and the language of a very American political movement, but adapting it. So, in ACT UP Paris it was more bureaucratic, with presidents and vice presidents. There was also a very different sense of entitlement with regard to health care because they've always all had access to it.

TM: And what about the difference between New York and Paris generally?

ACD: I don't think it's by accident that I would be in Paris and wander. The main difference to me is that in all of Europe, and much of the world outside the U.S., history is visible. You have statues, historic buildings and a constant public conversation about history. In Paris, history beckons you from all corners. In New York, there is no sense of history. Look at the East Village in the '80s and '90s --we were already seeing a gentrification and whitening of communities that gave our neighborhoods a diversity and dynamism: Jews, Dominicans, Haitians, Chinatown, Little Italy. A lot of my book is about the beginning of gentrification and the makeover and takeover of public spaces. Some of that happened in Paris in the '90s, too, in the Marais. But there's still a greater sense of history there. In New York, you only remember past decades if you lived them. Kids going into Tompkins Square Park in the East Village now have no idea it was a true battleground and a celebration of queer life, where the drag festival Wigstock took place. I used to have to go find my friends who were in the [heroin] shooting galleries in abandoned buildings. Some lived, some died, and that's our story.

TM: So much of your book is about the rise of the right in France. But recent elections suggest that France is holding back its right wing while we in the U.S. are not. Thoughts?

ACD: I don't agree. Marine Le Pen did not win this last election. But 34% of voters in France chose her, the highest vote so far for her National Front party. It's become a more mainstream political party. We make a mistake when we just look at the presidency. There is a right-wing resurgence throughout Europe right now. Yes, it's important to note how many French people ultimately didn't vote for Le Pen, but many did.

Meanwhile, the National Front is making more room for queer politicians and voters who want to get married and go to church. Marine Le Pen has chosen a gay white men for her main strategist and many of her top deputies. Why are gay people vulnerable to a message like that? I think it's because we carry an oppression within us and we're afraid. In France, a gay man hears a message that new immigrants are going to bring in ISIS, which will go after homosexuals. And here America we hear the same thing, "You should be afraid of Muslims." But both here and in France, we're not seeing enough of the LGBT movement inviting queer and gay Muslims into groups to talk about how you can be Muslim, gay and progressive at the same time.

TM: Very good points. On another note, a very moving part of your book is your memories of the gay male friends dying of AIDS whom you cared for. Your portrayals are very loving but also funny and unsentimental. How would you describe your relationship to gay men?

ACD: They're my brothers, among my loved ones and most intimate. Maybe because I've been a medical and science journalist for so many years, I've been very close to the disease of AIDS. So, I've also been very intimate with gay male bodies and sexuality. When you're dealing with death and suffering so closely, you have to learn to laugh at it. Humor is a tremendous weapon.

TM: You also really get into that late '90s moment when the crisis shifted somewhat from "I'm going to die" to "these side effects are destroying me."

ACD: That was a poignant and painful moment because we were starting to see the impact of treatment advocacy, that we could identify compounds and push to create drug trials to test them, put them into bodies who were willing to be the guinea pigs at all costs. My friends John Cook and Kiki Mason and Vito Russo, all of whom died, knew we were going to get there, and that was so painful to know that if you could just hang on a little longer, there was going be something -- but that you or your friends might not get it. Meanwhile, in ACT UP Paris, those friends were six months to a year behind the U.S. because French drugmakers were competing with us, and they weren't willing to bring over a compassionate-use program of American drugs. They didn't have the same buyers clubs that we did. So, we were watching friends die knowing that they wouldn't have if only they could have hung on a few more months.

Lesbian Love Lounge 90s
Lesbian Love Lounge '90s
Dona Ann McAdams

TM: Another great part of your book is the descriptions of '90s movements for lesbian power and visibility, such as the Lesbian Avengers, and also of all the lesbians within the AIDS movement.

ACD: It is so clear to me that we around 1992-93, we succeeded in taking a step with the Avengers and queer women. We stood up and said we have to be more visible, even to our own LGBT community. We used humor, very visible and bold sexuality, in-your-face street activism [such as swallowing fire swords] to say that lesbian issues were still being overlooked. We just celebrated the 25th anniversary of the Avengers at the New York City Dyke March. I was thrilled to see so many of my colleagues from that time, many of whom are currently powerful leaders in various movements.

TM: Do you think these millennial lesbians understand the path you forged for them?

ACD: I'm not sure if they're aware of the history. But they're embodying the history because they're intersectional in their politics. If you look at movements like Occupy, Ferguson, Black Lives Matter, you have lesbians in very frontal roles. I don't think it's by accident that many young queers don't want to use the word lesbian because they've moved on to an identity that embraces transgender lives. The umbrella is wider now, and that's the success of our movement. Some lesbians are nostalgic and bemoan that younger lesbians don't want to use the L-word. I'm not bemoaning that!

TM: Another thing that comes up in your book is that you were gender nonconforming before that was even a widely used term, or before the whole rise in trans visibility. Have you ever thought of yourself as trans? What do you make of our current moment? Did you like it better when it wasn't all so codified, and it was just kind of thought of as genderfuck?

ACD: You know, I think it's necessary for anyone who is oppressed to create their own frame or mirror to see themselves in. Every movement does this, creates a narrow and somewhat separatist framing. I get it. As for me, well, 50% of the time someone thinks I'm a man, and the other 50 they think I'm a woman, and both delight me. I am so happy to be seen as a masculine-presenting person. I just want us to challenge the construction of gender. I am not suffering anywhere compared to how black trans women, especially, are being targeted and killed by the culture. I feel that there's a core of misogyny in our culture we have not addressed.

TM: As we move toward landing this jumbo jet, here's a question that's been asked a lot lately. What can our current anti-Trump, anti-right-wing "resistance" learn from the AIDS and/or LGBT activism of the late '80s and the '90s? I wonder often whether some lessons just aren't applicable, because I think the right in the U.S. in those decades had not hardened the way it has now, and they were still somewhat vulnerable to being morally shamed.

ACD: I think there are some critical '90s lessons to apply. At that time, our bodies were criminalized and support for us from the federal government was utterly absent. We had to do three core things: One, put a human face on our pain. Two, hold the government accountable and call out their crimes. And three, create our own infrastructure to deliver services to the most vulnerable of our community by shifting state money around and tapping into our own civil society to create new services like community-based trials. So today, for example, while we're waiting for the axe to fall on Obamacare, we should simply say, well, this will happen, so what will our response be? The models are there for what succeeded in the '90s.

Anne-christine d'Adesky
Anne-christine d'Adesky in 1993 at the Berlin AIDS Conference
Bill Bytsura, the AIDS Activist Project

TM: So, what's next for you in your big, messy, crazy, rich life?

ACD: Well, I am 50 or more pages into a new book, which is about ISIS murdering gay men. But it's really about my journey looking at these new global wars against homosexuality and gender. I'll probably travel for this book. I don't know if I'll go to countries where ISIS is active, but I can tell you as a reader that you'll learn with me as I learn. This all started with me coming across a viral video of an allegedly gay man about to be thrown off a roof by ISIS and me thinking, no, I won't be complicit in watching this. In my head, I was hearing that allegedly gay man begin to narrate his life to me.

TM: Just like you and Sel! OK, and your personal life?

ACD: I'm living in Oakland, California. In the decade after the '90s, I ended up raising three girls who have just graduated from high school. So I won't be as domestic as I've been, and I hope I can move around the world a little bit more. Maybe my life will be a bit more like it was in the '90s. Clearly, I am partying just as much! I may, however, be a little wiser with regard to girls.

TM: Oh that's right, yes, we forgot to talk about all the girl drama you had in the '90s. Well, we'll leave that for the readers to discover.

This transcript has been lightly edited for clarity.