On the evening of my interview with Mattilda Bernstein Sycamore, I was running late. After finishing her anthology, Between Certain Death and a Possible Future: Queer Writing on Growing Up with the AIDS Crisis, out now from Arsenal Pulp Press, I sat at my desk preparing for our conversation when my pharmacy called. “Your prescription for Descovy”—one of two drugs approved in the US as PrEP (pre-exposure prophylaxis) to prevent HIV infection—“is ready for pick up.”
Since moving from New York to Louisiana in August, I had experienced a gap in healthcare coverage that took weeks to resolve before finally obtaining a card for free meds (Descovy costs over $2,000 a month without insurance). I hung up the phone and rushed to the pharmacy, an hour before our scheduled interview.
Inside the CVS, a familiar inner voice told me to lower my shorts, straighten my back, and modulate the timbre of my voice. Stop looking and acting so gay. Then, I began to hear something else: a chorus of alternate voices, full of hope and encouragement. I heard the voices of the anthology’s thirty-six writers, rising above my shame and fear.
“How do we explore the trauma the AIDS crisis continues to enact and imagine a way out?” Sycamore asks in the introduction to the collection. Was this visceral reaction, the tightness in my chest, the real or imagined judgment of the pharmacist behind the counter, part of that intergenerational trauma?
If anyone is capable of envisioning a future, it’s Mattilda Bernstein Sycamore, a Seattle-based genderqueer writer, activist, author of three novels and two memoirs, and the editor of six nonfiction anthologies. Her first memoir, The End of San Francisco (City Lights, 2013), won a 2014 Lambda Literary Award. Her most recent genre-bending book, The Freezer Door (Semiotext(e), 2020), was a finalist for the 2021 PEN/Jean Stein Book Award. Her novel Sketchtasy (Arsenal Pulp Press, 2019) was chosen as one of NPR’s Best Books of 2018. Across Sycamore’s work, she centers the experiences of those most marginalized, and in doing so, offers readers a way of imagining something brighter, and possibly better, hovering on the horizon.
When I returned from the pharmacy, I hopped on Zoom to speak with Mattilda about the legacy of AIDS, the artificial construct of generations, writing toward a feeling, and more.
The Rumpus: You make some interesting choices about what to include in this anthology. Can you talk about the decisions you made and how they shaped the collection?
Mattilda Bernstein Sycamore: In putting out an open call for submissions, I made a choice not to impose specific boundaries because I knew that the generational frame would vary—depending on race, class, gender, origin, HIV status, access to treatment and prevention—over time. Immediately, when I started reading submissions, it expanded.
Usually, we hear about two generations: the first that experienced sexual liberation, and then lost entire circles of friends to a disease that no one knew anything about, as the government did nothing to intervene. Then we hear about a generation growing up with effective treatment and prevention, unable to comprehend the magnitude of loss. There’s this story being told that these two generations cannot understand one another, that they have no way of communicating.
So, I thought, Well, wait a second, there’s a generation between these two, which I’m a part of, who grew up internalizing trauma as part of becoming queer. Certain death was always intertwined with desire. We share experiences with both these generations. If you feel like you grew up between certain death and a possible future, that’s the generational frame. By allowing the frame to be flexible and based on people’s experiences, I allowed a broader range of essays in the book and a more nuanced and complicated conversation.
Rumpus: The book pushes against the idea of two separate generations by arguing that the AIDS crisis is not over, that it’s still with us in many ways. What do you see as the political aim of this book?
Sycamore: There are never clear lines between generations; a generation is an artificial construct. My goals in terms of the book are: one, to facilitate this conversation, an intergenerational conversation that’s not happening, and two, to showcase perspectives that are missing in AIDS literature and cultural politics.
The underlying assumption of the book is that every queer person grows up with the trauma of the AIDS crisis. That trauma may manifest differently for different people, based on so many factors—age, of course, is one but also all the other factors I was talking about. That trauma has been internalized across the board in dominant culture, in gay culture, and in queer and trans cultures.
For example, in “Homeless Youth Are Still Dying of AIDS,” Sassafras Lowrey writes about working as a coordinator for an outreach organization in New York until 2018. Sassafras writes about how queer and trans youth living on the streets are still dealing with wasting syndrome and Kaposi’s sarcoma in the West Village, the same neighborhood where the narrative of wealthier white gay men is that the crisis no longer exists because everyone has access to treatment or prevention. This piece points to how queer and trans youth technically have access, but they’re also dealing with structural homophobia and transphobia. They’re dealing with drug addiction and trying to survive, and so technical access doesn’t mean they’re going to live. Sassafras’s piece points to the heartbreaking fact that, actually, for so many queer and trans youth living on the street, an HIV positive diagnosis allows them access to more care than they may receive otherwise.
For me, that’s part of the continuing legacy. One of the things I want to do with the book is to expose all these gaps in experience, and the places where the narratives we accept are, at best, misguided and often enact a kind of violence.
Rumpus: In his essay “To Say Good-bye,” Andrew Spieldenner discusses how PrEP came to stand in for the cure itself. He writes, “The movement surrendered the need for structural change around racism, homophobia, and capitalism, and instead settled for neoliberal solutions that included HIV medication.”
Can you talk about how the AIDS advocacy movement is shaped by this context—late capitalism, neoliberalism, whatever you want to call it—and what its consequences are?
Sycamore: I think you’re pointing to the way everything is becoming individualized and medicalized at the same time. The pharmaceutical industry, of course, their only goal is profit. If they can make more money off killing you, they’ll kill you, and if they can make more money off keeping you alive, then they’ll do that. So that’s where we are now, with this rhetoric that you take a pill for the rest of your life to prevent HIV infection, or you take pills for the rest of your life to prevent AIDS. The HIV/AIDS industry has ceded any kind of agency or impetus to the pharmaceutical industry.
For me, an anthology is a communal conversation. What I wanted to do in the book is have a conversation that isn’t necessarily happening in the same way. The conversation is the one happening in individual pieces, but also, it’s a conversation that happens between pieces. By placing different perspectives alongside one another, that may or may not agree with one another, we allow for those nuances and layers to exist.
Rumpus: I actually had a very similar experience reading Sarah Schulman’s Let the Record Show. In both books there are so many voices and perspectives that sometimes contradict one another. I had a sense of walking through a crowded room and eavesdropping on those conversations. As an editor, what is it like to encounter that?
Sycamore: A lot of anthologies are internal conversations between people in the same world, and I always want to resist that. I would say the majority of pieces in this book are from people I’ve never met. Even among the people I have met, most of them I don’t know that well.
I knew right away I wanted a wide range in terms of all markers of identity: race, class, gender, sexuality, region, HIV positive and negative [status]. Then I’m looking for pieces that are the strongest in terms of being able to articulate their own worlds. I also want work that is stylistically different. Then some pieces really surprised me, and I’m always drawn towards those.
Rumpus: Can you think of one that surprised you the most?
Sycamore: I learned something from every piece. For example, Ahmed Awadalla’s essay [“Those Who Left and Those Who Stayed”] about growing up in Egypt and emigrating to Germany, as someone who’s HIV positive, searching for better healthcare. Here in the US, we have an idealized version of healthcare in Europe as being better, and in many ways it is. But Ahmed writes about encountering dramatic racism and the legacy of colonialism in a Germany that thinks it’s past that.
Another piece that surprised me was C.L. Severson’s, “The Long Ladder of Shame.” She’s writing her piece during the emergence of the coronavirus pandemic, and she’s in a relationship where, because of HIV criminalization, her partner sues her for being HIV positive. We think we know about those issues, but here’s someone who’s having this experience that makes her more dramatically insecure—in her body, in her life.
Rumpus: You’ve edited the pieces to stand on their own and speak for themselves without conforming to certain standards, whether stylistically or thematically. Nevertheless, there are resonating themes that show up again and again. Severson’s essay ends with the line, “The double helix structure of our collective DNA is but a long ladder of shame.” I noticed that shame permeates all the essays in different ways.
Once you sat down and took a step back to look at the bigger picture, did you notice emergent themes that organized the book?
Sycamore: In arranging the collection, there was a kind of chronology to it. Loosely speaking, the earlier pieces are more about childhood. They’re about the ‘80s and early ‘90s. I wanted to establish the generational frame very clearly. The first pieces clearly [speak to] this experience of growing up with the AIDS crisis. From my own experience, the first time I heard of a confirmed gay person in the world was Rock Hudson dying of AIDS on the cover of National Enquirer.
Rumpus: Rock Hudson reappears across several pieces.
Sycamore: Exactly, which is one of those interesting resonances. I think that’s a generational narrative. We have these different markers, some seemingly random, like Blockbuster Video.
Rumpus: I also wrote down, “Bookstore,” since that space is disappearing.
Sycamore: That makes sense. Within this book, there are several generational stories. What happens in the middle is the generational frame gets complicated, and by the end, we are looking at a broader range. Some pieces by people who, perhaps, I would not have thought of including in this generational frame, people who are maybe about 30 [years old], and whose own experiences complicate this generational narrative. By necessity, the narrative becomes an intergenerational one.
It’s an interesting question because gay and queer worlds can be segmented. Like someone who’s five years older than you could seem like they’re from a different generation. There’s not as many intergenerational contacts, and some of that is the legacy of the AIDS crisis. Sometimes there’ll be just a line in someone’s piece that blows me away, and I’m still thinking about it now.
Rumpus: What comes to mind?
Sycamore: In Liam O’Brian’s piece “Across the Gap Between Us,” he says, “It’s not possible for any gay death to happen outside HIV/AIDS.” Another quote that sticks out to me is from “Family Business,” by Kate Doyle Griffith. “PrEP isn’t a cure; it’s a symptom of powerlessness.”
Oh, and Patrick Milian’s piece! [“Undead Disco.”]
Rumpus: I loved that one.
Sycamore: Isn’t it beautiful? So many layers.
Rumpus: I listened to [Robyn’s] “Dancing on My Own” immediately after I read it.
Sycamore: I love that. In the middle of the piece he says, “I was born the year Sylvester died.” Like, wow! There’s that generational experience right in our bodies.
Rumpus: What’s interesting to me is the idea of time, of queer time. For example, when people are waiting two weeks for their HIV test results, time can stretch and contract.
Sycamore: Hugh Ryan really speaks to that in “Rea.” He’s talking about getting tested when he was in college from 1996 to 2000, with that two-week waiting period. People think that everything changed in 1996, because there were treatments that finally extended people’s lives instead of just killing them. But the larger cultural experience he’s speaking to is still that same fear and terror. That embodied, wholly encompassing terror.
Rumpus: I also thought about the year 1996 as a turning point. What becomes obvious is that shame and stigma have not gotten better, nor has people’s knowledge about how HIV and AIDS works. In many ways, we’re still at the beginning.
Sycamore: That’s because of the internalization of trauma and the refusal at a large-scale level to address it. Ted Kerr talks about what he calls “The Second Silence.” The First Silence being the emergence of the HIV/AIDS epidemic, and the second being the one when treatment became available and, suddenly, no one was supposed to talk about it anymore.
We’re supposed to be grateful for drugs that extend people’s lives if they’re positive or drugs that prevent HIV infection, and we’re not supposed to think about anything else. It’s somehow an endpoint. The enactment of this kind of silencing mechanism doesn’t allow for a full expression of experience: for grief, loneliness, loss, but also connection, laughter, possibility. All of it at once.
Rumpus: On some level this anthology is doing just that. There’s such an expansiveness and capaciousness here. The book makes space for so many people who have been marginalized by this narrative of progress and the process of assimilation. What can be done about those dominant narratives?
Sycamore: I write in order to stay alive. It’s the way I’m able to express my experiences in the world in all their complication and messiness, and I point to the gaps that we’re told don’t exist. The gaps in our own lives, or in our own feelings, and our own losses in love. This book, in particular, allows for emotions to come to the fore.
That openness, that knowledge and co-creation, looking both forward and back, all that can create. The word “community” is so often used to oppress people, that I don’t even know if I believe in it, but I do believe in communal possibility. That’s when we speak to all our complications, interrelations, and differences. I’m giving a space for all of that.
Rumpus: Do you consider yourself more of a fiction or nonfiction writer? And do you see those practices informing one another?
Sycamore: I never know what I’m writing until I start. I don’t know if it’s fiction or nonfiction. I want to go with whatever is most vulnerable. But formally, I don’t see a difference. I always want the writing to determine the form rather than the other way around.
In Sketchtasy, I was writing about a particular time and place: Boston in 1995. I wanted to conjure a feeling of being trapped in that moment, in a city that’s rabidly afraid of difference, and in a gay club culture that offers pageantry, but is there promise to that? I had no idea I was writing a book about AIDS until I was done. Then I thought, how could I not when writing about 1995, the year in the United States where more people died of AIDS than any other year?
There’s no way for the characters in that book to imagine a future. When I was done, I was like, “This is a generational novel about AIDS.” That’s where this anthology came from: the idea of a generational story that’s not being told.
Rumpus: That’s so interesting that writing a novel led you to an anthology of essays. In both Sketchtasy and Freezer Door, there are moments when the prose turns into lyrical poetry. So, whether in fiction, nonfiction, or editing an anthology, you’re always resisting conventions of form.
Sycamore: I always want my work to push against conventions, but I want the writing to guide me. I write towards a feeling. Because if our writing is just fitting into a prescribed narrative, or a prescribed structure, it doesn’t allow for the gap, for those places of rupture where our full selves emerge.
Photograph of Mattilda Bernstein Sycamore by Dorothy Edwards/Crosscut.