Screenshots of Zoom Grief Workshop hosted by members of WWHIVDD?, November 9, 2025.

The following text was compiled by a small group of doulas engaged in a kind of grief work over the past year that included Ben Evans, 

. This work was rooted in activating and responding to Alexandra Juhasz’s documentary film 

 (2025) and its companion archival installation, 

, presented in both New York and Los Angeles in the fall of 2025. 

is an experimental documentary engaging with decades of DIY activist media, two death bed/legacy videos, and the wisdom of many living “AIDS workers,” as they all sit together in one (changing) format, video—VHS, Hi8, digital, Zoom—to address these and other questions:

How do neighborhoods, sweaters and scarves, videotapes, and queer bars hold ghosts?

 dir. Alexandra Juhasz, digital video, 70 minutes, 2025.


This unabashedly DIY video holds Juhasz’s images of: Jim (James Robert Lamb, 1963–1993), a gay white male go-go dancer who died painfully at 29 before there were meds in 1993; Juanita Mohammed Szczepanski (1957–2022), a Black disabled queer feminist media activist who died in 2022 on her own terms, in her sixties, and due largely to inequities in the American healthcare system and COVID; Alex, a queer feminist caught with them on tape at 29 and 59; fellow AIDS workers Ted Kerr, Marty Fink, Pato Hebert, and Jih-Fei Cheng; and the current owners of the Lower East Side’s legendary queer bar, the Parkside Lounge; as well as streets, hospitals, and apartments of New York, then and now.

After watching and discussing the video several times, we collectively devised two generative public “political grief” workshops focused on naming, holding, and sharing our own grief honestly and communally. While planning those workshops across many online meetings throughout the year, we kept a shared document that included notes, chat text logs, process-based thinking, comment-bubble-annotated runs of show, and tangential observations, among other things.



To create this piece, we decided we would each reflect on the process of processing grief—which we did both during the planning stages with each other and more publicly during the workshops. We also decided that we would cite our working document in these new reflections, which you will find as footnotes throughout. Our intention in composing this text was two-pronged: first, to engage once more in the act of doulaing ourselves, and second, to offer a tangible sense of what that can look like—not just for us, but for any group who continues to choose the work, the process, and each other.

Before you read on, we invite you to watch 

, the death bed/legacy videos of Jim and Juanita, or the conversations between Juhasz and fellow AIDS workers, or to engage with the myriad digital holdings of AIDS memory and response available on the Please Hold website.

 By doing so, you become part of an enduring web of community that together holds grief and hope in light of HIV/AIDS and other assaults; by doing so, you touch and consider how digital traces can (and can not) contribute to communal memory and connection.

– C. (Constantine Jones) with edits by Andrew Suggs

Alexandra Juhasz: Doulaing Ourselves to Doula Others

In the fall of 2025, I transformed my experimental documentary video, 

, that ran contemporaneously in two queer archival spaces: the Pat Parker/Vito Russo Library at New York City’s Lesbian, Gay, Bisexual, & Transgender Community Center

 and the ONE Archives at the USC Libraries.

 Centered around grief and the “technologies of memory” that hold and also release or change it, these interrelated iterations work best in community and via facilitated conversation.

 The video and the installation suggest that grief changes over time, in relation to what and who holds it, and how: materially (in a sweater, on a city street, in a videotape, or letter) and as a matter of process (whether walking, reading, or “sharing the load”). The two iterations of the work, as an art installation situated in archives, consider how Zoom and other pandemic technologies composite onto screens, but also into rooms, flattening or deepening attention, connection, and care.

My documentary and installation are material renderings (in video, in a room, on many Zoom screens) of a commitment to share the grief—and the living/loving possibilities allowed by HIV/AIDS—with other “AIDS workers” because that is something I believe in and need. With a commitment to making more of this, I organized six programs with my institutional sponsors with the holdings in the installation as means to generate more conversations about holding, archiving, and making good use of memories and lived engagements with HIV. One of these was the Political Grief workshop (held once in person at ONE Archives in Los Angeles on October 4, 2025, and once on Zoom, November 9, 2025), run by the AIDS collective of which I am a member, What Would an HIV Doula Do? We practiced holding grief in Zooms and rooms as part of a building process of naming, looking at, and sharing this ominous, changing, and often private burden in community, first during COVID lockdown, and later as we organized these workshops.


A flyer for the Political Grief Workshop by WWHIVDD.


When we held the two Political Grief workshops, participants engaged deeply with other people, their own losses, and with some of my collected materials. They were invited to look at the installation at the ONE archives, or at holdings online on my website, which is itself a deep archive of resources about HIV/AIDS.

 The doulas presented our Los Angeles workshop via a carefully orchestrated hybrid playbook: half in the archive, half participating on Zoom. At the online workshop, we were all in our private boxes, an already familiar territory, given that we had all met and deepened our connections online during COVID lockdown; to this day, some have never met in person. As we continue to plan collective gatherings for our widely distributed network, we also honor the affordances of the in-person, hybrid, and online as distinct, if connected, modes of care and access first refined in lockdown and still needed by some of our members.

People in the room in Los Angeles were moved when they understood that they were allowed and encouraged to touch and read my trove of letters from Jim—held by me for decades in a plastic flower bag—now available to all in an open and accessible archival box sitting on a desk in the gallery. The letters were soft with age and yet youthful in their romantic flourishes.

I chose to hang Jim’s flower bag on the wall outside the gallery with some of his letters in a vitrine below and his blue Armani sweater to its side (much discussed in 

), a strange and simple invitation to enter. People online could explore, but not touch, the many digitized materials on the pleaseholdvideo.com site, including watching the “legacy” videos of Jim and Juanita from which I had been compelled to construct 

. By requesting my collaboration on these death bed videos, each had asked me to carry forward their words and work. Like grief, this responsibility has no end. When I share their videos, my friends linger, and new opportunities for understanding and connection are drawn. In his legacy work, 

, you can hear Jim discuss the flower bag in his own inimitable way.


What was most resonant for me about our workshops was how our process as a collective—doulaing ourselves to doula others with a commitment to hold and make space due to the transitions that occur because of HIV/AIDS

—underwrote everything. Through months of meetings, we came to understand the presence, tones, rhymes, rhythms, ongoingness, and power of grief by sharing about our own, thereby allowing for us to name three of its strands: 

. We came to a realization that life under Trump is organized by so much grief, and so many different griefs, that to doula in this period meant little more than opening and shaping spaces

 to feel, name, share, and together hold its awesome weight. Our workshops held space with a gentle and palpable coherence because we had taken time to develop a language, process, and strength first in dialogue together.

Grief Workshop hosted by members of WWHIVDD? at ONE Archives in Los Angeles, October 4, 2025.

The critical things I learned about grief from our meetings and the workshops are:

It is always reasonable, and often needed, to offer space to others to help them hold their grief.

Grief can be constituted through a variety of co-inflecting losses and can be expressed in infinite registers, formats, places, and affects.

Sharing and holding grief’s burdens is central to organizing, care, and hope.

Making time and space to unearth, encounter, witness, and express grief is valuable and sustaining, especially under fascism (which is built around violent loss).

What does it mean to grieve for what is yet to come? … When does grief begin?

To your previous notes, please add reflections about your own grief to what you have noted and gathered from the exhibition.

 … Evaluate your notes and ideas to determine which of the three registers of grief are evident to you: personal, political, and anticipatory. This could be all three, or only one.

The “notes” referred to above were notes taken by workshop participants during the Grief Workshops.

At the time of this prompt, their notes already included reflections from spending time with either the installation at the ONE Archives in LA or the website for Alex’s video/installation 

, which deals specifically with how contemporary technologies of memory impact our understanding of and relationship(s) with(in) the ongoing AIDS crisis, “flattening and deepening attention, connection, and care.”

My notes here reflect and mirror that process, and serve as another layer of process in which I doula myself and was doulaed by my friends and cofacilitaors—my grief, my loss, my HIV diagnosis—as I review the archive of our workshop planning.

How is research and study a critical component of AIDS activism? How do we learn, remember, and grieve differently on paper, screens, fabrics, and video? How do computers and magazines, sweaters and scarves, videotapes and queer bars hold ghosts? How do we let them go?

were both very ALIVE to me. I know we all kind of know this, but this ghost thing... the ghosts who help us, hold us, heal us...

 dir. Alexandra Juhasz, video, 70 minutes, 2025.


As I write this, I am sitting in my partner Victor’s brother’s home on Long Island. Victor is a long-term AIDS survivor. He was there in the early 1980s, at ground zero, the Lower East Side of New York City, throwing club nights with budding performance artists who are now household names among my circles of friends, mostly arts professionals and artists, but I think more often of the many others who he watched die—fearing he would at any moment—whose names, performances, and promise are forgotten.

We are here to catch a flight at LaGuardia in the early morning. We will be attending my stepmother’s funeral in Tennessee. She was 57. Her death at an early age had more to do with drugs than AIDS, but how important is the differentiation, really? I worry about my father. His grief and loneliness. When older folks lose their partners, they often die soon after. At least I think I heard a statistic about this once. What about those whose partners died at 20? At 36? I think of the toll AIDS continues to take on his/Victor’s generation.

It’s cold in this spare bedroom where I am typing, so I have wrapped myself in a large, fuzzy leopard print scarf. At one end, in a subtle tan ink, the Everlast boxing gear logo is printed. The juxtaposition of this flashy print and macho logo makes me think the scarf is handmade. It was a hand-me-down of sorts from Victor’s ex, Ian. I never met Ian. He died in his early 30s from a drug overdose. He was HIV positive. Victor’s grief from Ian’s loss was fresh when we first met. He handed me a contractor’s garbage bag full of Ian’s clothes and asked me to keep what I wanted and give the rest away. He couldn’t bear to go through them himself. I learned a lot about Ian through that bag/archive. He liked to buy and alter thrift store clothes and had a great sense of style. Although he was both taller and slimmer than I am, each piece of clothing fit me well.

I found a piece of his artwork among the clothes, the interior sleeve of a Kevlar bullet-proof vest he had silkscreened with corporate logos. He was an artist. Now I’m crying about a boy I never met. That’s nothing new, though.

My daily HIV pills that keep my virus at bay, supplied from drug corporations via Medicaid, are my bullet-proof vest. Victor was a very active member of ACT UP New York in those early years of AIDS. He fought for me to have these pills, helping organize demonstrations in both the streets of New York and the FDA headquarters. Now, as someone whose academic and professional work is centered on art and AIDS, I encounter Victor’s traces in the archive often in my research. Those traces also encircle and infuse my everyday life.

Everyone is available to be so loved when you find them in the archive

When we began planning this workshop, Alex introduced the term “anticipatory grief” and I felt seen and heard. I could now put a name to this feeling I had as a child growing up in the late 1980s and early 1990s in rural Tennessee. I didn’t know a single out queer person then, but I was watching men dying on television and sensing I was like them. Knowing I would die that way, with those lesions all over me. I had mixed up death and sex. I was already grieving my own demise, prefigured by my budding queer hormonal urges. Deleuze and Guattari say, as summarized by Lovett/Codagnone, that “there is no revolution without libidinal investment.”

Inheriting a virus & a politics = to also inherit a grief & responsibility to steward that grief



When I was diagnosed with HIV in 2008, my expansive grief stretched in directions larger than me, to times and places I had never been. I knew, as my doctor explained, that “HIV was no longer a death sentence.” I came to disagree with his second statement that those diagnosed with HIV “go on to live pretty normal lives.”

 In the wake of my diagnosis I was not only grieving my own situation, I was grieving the millions of lives lost before me to this virus, the impact that had yet to come for me, and for those not born yet whose lives would be shaped by the virus. I had become part of an intergenerational lineage that includes folks dead, living, and unborn.

Sara Marcus has written about this beautifully in her book 

 (2023), where she describes “listening for the dead and being in coalition with one's ancestors, and assembling a lineage to which you can hold yourself accountable.”

Let this be a shared ritual that will eventually leave traces for others.



12:49:26 from Ben Evans to Everyone:
Yes, I am thinking about how stewarding ties to future… what does it mean to grieve for what is to come? (There was a sense back in November, for example, of a coming grief but we hadn’t experienced it yet—and now we are, and will continue to… in terms of political grief).

Andrew: 

12:50:00 from Molly Pearson to Everyone:
Anticipatory grief—something people who are dying of terminal illness (of all kinds), and those who love them, know a lot about.

12:51:22 from Andrew to Everyone:
“Anxiety because one has no more time to live and to die, because one no longer lives and has not yet died, because one has died already and nevertheless lives on, because life and death merge beyond recognition; anger because one cannot prepare in one’s lifetime for the time of dying, because one has been betrayed and cheated not only out of one’s life but also out of one’s death, because one imagines oneself to be the victim of a life and a death that alternately occupy each other’s position whenever one tries to grasp them, whenever one tries to orient oneself by means of their unavailable and nevertheless appointed time.” 

—Alexander Garcia Düttmann, “Dying Before One’s Time” in 

At Odds with AIDS: Thinking and Talking About a Virus



I also brought some personal grief to the workshop. My mother died in 2020 and I learned just before that she was a long-term HIV survivor, living in tightly kept secrecy about her illness in Appalachian Tennessee since 1990. Thirty years of hiding, even from me. When I found out, I had been hiding my own HIV serostatus from her for 12 years. I thought it would be more than she could bear. After all, I was living a “pretty normal life.”



What emerges: “not aloneness” (we don’t have to hold it alone).



Feel free to write some notes and ideas about this.

Which kind of grief do you want to participate in?

 from our workshop planning, and though it was actually a pragmatic and organizational tool, I feel struck by it in a new way, today. At which point does grief become participatory, and at which point do we have so much to choose from that our participation is inspired through choice—or in this case, desire?

, near the end, when Marty’s voice fades in,

 speaking about the idea of inheriting—through shared, intergenerational memory—a kind of grief. I chose this clip from the film as a way to frame my own reflections about grief in the workshops because it reminded me of something I’ve thought about a lot in my own relationship to living with HIV, which is a notion that, at the moment of my seroconversion, I not only inherited an illness—I inherited a politics.

 So, in joining Marty’s voice and open questions around what gets inherited, I ask: what does it mean for a life when memorial, grief, and politics are already baked in?

In this way, the collective grief that is endlessly braided over time, through generations, begs to be healed somehow—or at least that’s been my understanding of intergenerational trauma. Yet, in the context of Alex’s film, and in the context of the workshop this group of us designed and facilitated, I now wonder (and feel deeply) that healing is quite possibly not the point, nor the goal. The choice becomes to live with grief, in all its threads and registers: the braiding of political,

 What are the costs of not choosing to live with grief?

 I think somehow, through this workshop, this small group of us learned what it means not only to identify 

which kind of grief we want to participate in

, but also what it means to invite others to engage in a similar question: if grief is a given, how might we desire which version of it we want to experience?

C. (Constantine Jones): Big Hole, Please Hold

I am going back to visit my grief now, in order to write this. I mean that statement literally, spatially, and sincerely. It isn’t far—just there, in my chest, behind my eyes, in my home. Grief planted itself in the center of my room—a big yawning colorless hole right in the middle of the floor; no remarkable qualities to note except the usual persistent possibility of falling back in or else, when trying to get out from under my present, I might stop a while to sit hanging my legs over the edge and staring down so long the days go by tick tick too soon. But I’ll go back there now—like I said it’s not far. I’ll go with my wicker basket and I’ll lower it down to draw something up for us here.

 now floating in some cloud (which is really just a bunch of chips and wires in a metal box somewhere out under the big sky of the country), I once contributed the following text:

I remember always having this photo, but not where or when it was taken. It is good to see us smiling & it hurts to see us like that too. I remember that little crack in her voice whenever it would go up in excitement when she spoke to me. I think it was the goodness breaking out to touch whoever it could. That’s just how she was. I remember a hundred small things she would tell me & imagine what she would tell me today. I remember her phone number. I never saved her in my contacts because dialing that number was part of the ritual. I remember softness. I look at this picture every day & because I look at it I remember softness & I try to be soft. I try.

On November 9, 2025, somewhere between 5–7 pm ET / 4–6 pm CT / 2–3 pm PT, during the second iteration of WWHIVDD’s Political Grief workshop, I typed that into the body of a shared document where others were also typing things simultaneously, giving their own grief a shape. I did not write this text that night though; I copied it from a handwritten journal entry dated September 19, 2025, during a workshop about archives I attended for work, in which I was a participant rather than facilitator. Today, January 15, 2026, I paste it again here. This is now the third time that this particular grief has taken shape in this particular arrangement of letters and words and sentences; each occasion, its own context; each remembering, its own revisitation of that big hole in my room.

The picture I’m describing in that passage is one of me as a child sitting on my Yiayia’s knee at some family member’s wedding or other. I can look up from where I am typing right now and see it resting on the bookshelf at eye level, both of us smiling out from the past into the future, which has since become my present now and also, again because of the big hole, my past too.

In the run-of-show for our second workshop, item number 4 under the bolded heading “

Each of the doulas responds to the clip or the video more broadly: this frames what happens next.

A simple enough line which itself contains a note from Ben made through the comment function in Google Docs: 

we're acknowledging that this part should really be kept short/introductory/contextual so we can get to the workshop-y part.

In revisiting our process now, I’m again feeling the weight of many different times clanging around like raw ore in a bucket.

 During our first workshop, on October 4, 2025, my short/introductory/contextual story was about grieving my Yiayia, who passed away in Alabama in 2015, a month after I moved to New York from Tennessee. During the second workshop, a different grief was singing and so I instead recalled an action I was part of in December of 2024 in protest of the Israeli state’s (ongoing) genocide of Palestinians, which itself had already been going on for a year by then (or 75 years, if we’re calculating truthfully). This grief was not so much the grief of feeling the action was futile but of feeling the profound and irreversible loss of so many possible futures;

 of the Palestinian lives whose remaining time was decided for them by an occupying power and also for the land itself, whose stewardship we have utterly rejected, abandoned, refused. And all of this was meant, to quote our run of show, to frame “what happens next.”

This, I think, is where I hoped to land together—at that simple and impossible question: what happens next? Truthfully it is hard to find the 

 are always intruding, drawing me back to that hole in my floor. I have tried to stop it up, the hole, but it seems to go down forever. I have tried to cover it, but nothing is big enough. And so finally I have decided the only way to manage that hole is to rearrange the furniture around it; to try to get used to it being there; to tend to it, even, if necessary. Now the task is not to barrel through every moment ignoring that big hole in my chest, but instead to reckon with the fact that, because it is very large and very deep and full of so much and so much else, it more often than not will take me a bit more time to navigate the rim and move towards all those possible futures still waiting for us to decide on them. There is no shortcut across the hole, and if I falter along the way, so be it. But I am on my way, and rather than meet you there I wonder if we could go together.

This past year, 2025, has been …a doozy.

It has been filled with so much turmoil, upheaval, dismantling, and sorrow. For me and in my life, I have found that the “shock and awe” tactics of the government have been “effective.”

Each day, I would wake up to more and more loss, to more and more lost…

without ever fully processing or grieving the impact of the previous day.

I mean, I don’t mean to sound melodramatic.

What Would an HIV Doula Do? is a community of people joined in response to the ongoing AIDS crisis. We understand a doula as someone who holds space during times of transition. We understand HIV as a series of transitions that begin long before being tested, that continue after treatment and beyond. We know that since no one gets HIV alone, no one should have to live with HIV alone. We doula ourselves, each other, institutions and culture. Foundational to our process is asking questions.

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What Would an HIV Doula Do?

What was most resonant for me about our workshops was how our process as a collective—doulaing ourselves to doula others with a commitment to hold and make space due to the transitions that occur because of HIV/AIDS—underwrote everything.

A Circle of Circles

When Does Grief Begin?

This year, we’re reflecting on the act of gathering as an artistic form and tool for building movements, distributing resources, and nurturing new futures. In a field as expansive and difficult to define as socially engaged art, the impulse to gather people, collectively organize, and build networks emerges as a throughline amongst a vast array of disciplines and practices. This work cannot happen individually; collaboration is inherent to the process at all scales, from artist cooperatives, ensembles, and mutual aid networks to broader efforts of convening and coalition building across networks and geographies. How can we create intentional spaces to build together and dream together? What are the formats we might create or return to in times of escalating crisis? How can the act of gathering build solidarity and coalition?

Our own rebuilding process as an organization revolved around a series of listening sessions in New Orleans, San Francisco, New York, and online, where we gathered artists, practitioners, and community partners to discuss the needs of the field and the types of models needed to meet them. Participants repeatedly emphasized the deep desire to be together—to think, to build, to rest. Our programs developed out of this feedback, centering support for artist-led gatherings in both our monthly microgrant program, Field Funds, and our fellowship program, In Fellowship. Our Field Funds cycles for artist-led gatherings consistently see the highest spike in applications. Across the country, artists are building schools, organizing festivals, hosting meals, and carving out space, both physical and virtual, to be in community together.

This past year also represented the introduction of our reimagined fellowship program, In Fellowship, which gathers a working group of artists, practitioners, and cultural organizers to collectively explore key facets and processes of socially engaged art. Over a year of virtual meetings dedicated to group reflection and mutual learning, cohort members shared the joys and challenges of collective work within the context of interconnectedness and shared power. Being able to convene regularly with this cohort, even virtually, offered a balm to our team during a year of unending crisis. “This cohort has helped to create a place to think about these questions, to listen to how our colleagues around the country are trying to move,” Alison De La Cruz of Great Leap recently reflected during a group call. “There’s not one solution model to the challenges that we’re facing right now, and more and more I find it deeply radical when people choose to do things together.”

To kick off the issue, we’ll hear from each of the cohort members, both individually and together in conversation, to offer learnings and resources that have emerged from their time In Fellowship. Each issue of 

engages a guest collaborator, and the cohort is assuming that role for the first set of contributions. Later this year, we’ll be welcoming the second cohort of In Fellowship and will invite those members to contribute, as well.

We’ll also be in conversation with artists from across the field who have built practices around the act of gathering, offering a glimpse into their work and process. What models are they developing? How can gathering unfold safely and accessibly right now? How can we build more channels of support for this crucial aspect of socially engaged practices? Welcome to the third issue of 

, a roving exploration of these questions and more from artists, practitioners, and their circles of collaborators and networks. It’s an honor to gather their voices and to share them with you.

This year, we’re reflecting on the act of gathering as an artistic form and tool for building movements, distributing resources, and nurturing new futures. In a field as expansive and difficult to define as socially engaged art, the impulse to gather people, collectively organize, and build networks emerges as a throughline amongst a vast array of disciplines and practices. This work cannot happen individually; collaboration is inherent to the process at all scales, from artist cooperatives, ensembles, and mutual aid networks to broader efforts of convening and coalition building across networks and geographies. 

The Cure Is Always in Someone Else’s Hands

But there, in that “open” solitude, transcendence is also waiting: the outstretched hands of other solitary beings. For the first time in our history, we are contemporaries of all mankind.

– 

When I was a child, I discovered the existence of AIDS through its omnipresence on television. I didn’t understand the biology, but the gravity of the images made it impossible to ignore. It is a memory also tied to how closely my mother watched the news, with that solemn gaze reserved for catastrophes. I don’t know the exact moment when I transformed that borrowed fear into a personal mission: I told my mother, with the absolute certainty one only has at six or seven years old, that I would become the person who discovered a cure

 for AIDS.

It’s the same old story, or at least a variation of the childhood cliché. When you’re a child, something dazzles you—a fire truck, a rocket ship, a white lab coat—and you decide that will be your life. I vividly remember teachers asking the typical question in the classroom: “

” While my classmates talked about soccer balls or police stations, I proudly answered, “

.” At the time, I didn’t understand the tension my answer generated in adults. I always thought the rejection was due to my affected intensity. Over the years, I came to understand that there were things better left unsaid in public, and that my desire was, ironically, intertwined with the social condemnation of who I am.

I was born in 1986, right in a rift. I belong to a generation that grew up with globalization as background noise, the hum of an old electronic device that was always there. In my home, the soundtrack was provided by Lola Beltrán and Vicente Fernández, but my ears were tuned to the frequencies of the Spice Girls. English was an extraterrestrial language, an unattainable luxury, and I spent years inventing the lyrics to their songs, endowing them with an epic depth they never had. But that is the perverse magic of capitalism: it sells you belonging on credit. It offers you a piece of its ghost.

By 1994, that auditory fantasy had been turned into law. The North American Free Trade Agreement (NAFTA)

 was the signature on a contract we never read, the promise that progress came packaged as free trade. Political scientist Sung Hyong Rhee puts it with a painful clarity: NAFTA made the Mexican state “too large to handle local problems and too small to resolve the diverse international ones.”

 We were left in limbo. Like an awkward adolescent—neither child nor adult—with adult responsibilities and children’s rights. The ruling elite, Sung argues, used the treaty to “institutionalize economic reforms.”

 In plain, street-level terms: they locked in, with an international padlock, a model that left us exposed. We didn’t lose territory as we had in every nineteenth-century U.S. intervention; we lost something more abstract and porous: the right to make our own mistakes. The privilege of imagining a future that was not a carbon copy of the American Dream.


Here is a perfect symbol of that surrender: the exhibition 

 at the Metropolitan Museum of Art in New York in 1990. An epic staging, financed by the very television network that sold us the idea of a modern Mexico.

 It was already difficult, complex, to articulate something as ours, as Mexican. And yet the pyramids, the codices, the gods of a pre-Hispanic world were placed in display cases like crown jewels, meant to convince the gentlemen of the North that we were a safe investment—civilized, exotic, but manageable. Years later, when the last Mexican president of the twentieth century, Ernesto Zedillo, had to ask Bill Clinton for a 20-billion-dollar bailout, something became even clearer: our history had turned into the constant collateral for loans—yes, economic ones, but with intellectual consequences, for lack of a better term—that enabled the extractivism of material, social, cultural, and spiritual resources, and more.

This is how a new dynamic of intervention was established: while Adobe’s software, for example, was protected by international law, the textiles of Indigenous nations—the living memory of entire communities—were left exposed to plunder. It’s the same old story: what belongs to them is “Art” with a capital A; what belongs to us is “craft,” folklore, raw material for intellectual tourism. The conquest never ends; it only updates itself. It no longer arrives on galleons, but in clauses of intellectual property.

It is difficult not to draw parallels under these circumstances. It is difficult not to think of how the Spanish invasion of 1492 marked the beginning of a Eurocentric colonial project that would later find its most refined and expansionist expression in the United States’ Manifest Destiny. As historian Reginald Horsman points out in 

this ideology was not merely a narrative of territorial expansion, but the construction of an Anglo-Saxon supremacy that justified domination over Mexicans, Indigenous peoples, and Afro-descendants as a natural and racial right. The sixteenth-century colonizer and the nineteenth-century pioneer shared the same logic: that of a healthy, strong, and “civilized” body entitled to appropriate territory and to subjugate bodies deemed weak, vulnerable, or inferior.

This expansion that occupies and exploits finds its continuity in the unprotected national body. Just as European pathogens such as smallpox encountered an unprepared immunological ecosystem in the sixteenth century, HIV arrived in the twentieth century to a similarly vulnerable political-economic ecosystem—one so forcibly opened to the world by the rules of neoliberalism that it had lost its own defenses. The analogy goes beyond metaphor. Medical anthropologist Vinh-Kim Nguyen argues in 

 that the global management of AIDS became a new terrain of biopolitical governance, in which powers of the Global North set priorities and controlled resources, often relegating countries of the Global South to the passive role of recipients of “aid” rather than sovereign actors in their own health.

This control is exercised in very concrete ways. One brutal example is the constant pressure exerted by the United States and other Western powers on the World Trade Organization to limit the production and distribution of low-cost generic medicines. As documented by law professor Susan K. Sell in 

 the U.S. pharmaceutical industry has engaged in fierce lobbying to ensure the strict enforcement of intellectual property rights—the Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS)—even when access to life-saving medicines is at stake. One emblematic case, analyzed by Ellen ’t Hoen in 

The Global Politics of Pharmaceutical Monopoly Power

 was the enormous pressure exerted by the Bill Clinton administration from 1999 to 2000 on South Africa, threatening trade sanctions if the country implemented a law allowing the importation and production of affordable generic versions of antiretroviral drugs for AIDS. Only a global activist campaign forced the United States to back down.


Similarly, India—which became the “pharmacy of the developing world” thanks to its robust generic drug industry—has faced decades of pressure to align its laws with U.S. intellectual property standards, raising costs and restricting access to medicines for millions, as ’t Hoen also documents.

 The cure, once again, was in someone else’s hands, and that someone placed a price on survival—not only an economic one, but a political one.

HIV thus encountered a health-care system in Mexico that was already limping along, weakened by austerity policies imposed from the outside. Mexico could not afford to fund research for a cure. It could not even produce antiretrovirals in time. We had to wait, with the patience of the subaltern, for the North to decide to send us salvation—salvation that always arrives with interests and conditions attached. As Enrique Díaz Álvarez writes, speaking of COVID but describing a permanent condition, “a large part of (our) societies are immersed in internal and asymmetric wars. Undeclared. Silent.”

 HIV was only one more risk added to our already long list of survival strategies.

Today, our scientific research is concentrated on epidemiology: we count the dead, we plot graphs of tragedy. I do not disparage this work; it is necessary. But I mourn what it implies: we are the notaries of the pandemic, not the architects of the cure.

And yet, the most insidious aspect of this dynamic is not the economic one, but what it does to the mind. Capitalist propaganda has colonized even our dreams of salvation. As a child, I was unsettled by the episode of 

 in which the aliens Kang and Kodos demand to be taken to the world leader and are led before Bill Clinton. I also cursed in the movie theater while watching 

, where Mexico City is portrayed as the world’s first zombie dumping ground, broadcast through a Hollywood news report. This narrative is no accident. It is the eugenic component of capitalism. It teaches us that, in the face of catastrophe, the civilization that must be saved is the white one, that of the Global North. We are the sacrificial backdrop. The message is clear: intelligence, heroism, the solution—they are always in someone else’s hands.

The revenge of the Global South begins when we stop asking for permission to have dreams of our own. On the day of my diagnosis in 2017, guilt struck first—a silent, ancient guilt. But over the years, that guilt turned into clarity. Those dreams would have broken anyway. How could I have funded my research in a country where centers of study are islands of precarity? With what infrastructure, with what support? The COVID-19 pandemic shamelessly exposed what we already knew: our health-care system is a hollow shell, held together by shouting and patches. It is rotten from the inside, eaten away by that violent entry into globalization in which we lost the key to our own future.


And yet, here comes the turn. The turn that brings me back to the child at the beginning. I take my daily pill, manufactured by Gilead, a pharmaceutical company that grosses billions of dollars a year. And, curiously, I remain obsessed with the cure—but it is no longer the same one. My search has mutated. While antiretroviral treatment for HIV is an undeniable biomedical advance, its cracks must also be exposed: how it can divide the community, how it medicalizes and individualizes responsibility, moving away from the collective care that emerged during the AIDS crisis. The pill is a tool, but it is not the cure. It is not my cure.

Because my cure is no longer a chemical compound. It is an act of political exorcism. My body is invaded by a virus and, at the same time, sustained by a drug patented in the North. It is an occupied territory. The true cure, then, would be to expel the United States from my organism—to remove its ideology of compulsive consumption, its aesthetics of senseless accumulation, its false myth of linear progress, and its control over my life expectancy. I want my body to cease being a colony.

This is not a metaphor. It is a practice of political imagination. It entails what Tomás Ejea Mendoza, writing about cultural policy, calls a shift from “discretionary” management—authoritarian, vertical—to a “participatory” one.

 It means reclaiming the right to imagine and create from ourselves, not from the script assigned to us.

And how is this done? There is no manual. But there are clues. It lies in the “radical subjectivity” of testimony that Enrique Díaz Álvarez describes, in the act of putting our own words into play as survivors. This text is my testimony. That childhood fantasy of the scientist who discovers a cure for AIDS was, without knowing it, the longing for a future sovereignty. It is found in South–South solidarity, in seeking those “outstretched hands of other solitary beings” of which Octavio Paz speaks. The cure is not found in isolation, but in the recognition that our vulnerability is a shared territory from which we can build something else.

That imagination—that right to dream big—is the first thing colonialism steals from us. Recovering it is the first step toward the true cure. I desire a cure as a form of refusal of the Global North that inhabits my imagination and my reality. Don’t you?

La palabra que aparece: El testimonio como acto de supervivencia

. Barcelona: Anagrama, 2021.

Ejea Mendoza, Tomás. 

Poder y creación artística en México: Un análisis del Fondo Nacional para la Cultura y las Artes (FONCA)

. Ciudad de México: Universidad Autónoma Metropolitana, Azcapotzalco, 2011.

Herner, Irene. “30 siglos de arte mexicano.” 

Race and Manifest Destiny: The Origins of American Racial Anglo-Saxonism

. Cambridge, MA: Harvard University Press, 1981. 

The Republic of Therapy: Triage and Sovereignty in West Africa’s Time of AIDS

. Durham, NC: Duke University Press, 2010.

Paz, Octavio. 

The Labyrinth of Solitude: Life and Thought in Mexico

. Translated by Lysander Kemp. New York: Grove Press, 1961.

Rhee, Seung Ho. “El TLC y la crisis del Estado nacional en México.” 

Private Power, Public Law: The Globalization of Intellectual Property Rights

. Cambridge: Cambridge University Press, 2003.

't Hoen, Ellen. 

The Global Politics of Pharmaceutical Monopoly Power: The Political Economy of the TRIPS Agreement and Access to Medicines

. Diemen, Países Bajos: AMB Publishers, 2009. 

Private Patents and Public Health: Changing Intellectual Property Rules for Access to Medicines

. Haarlem, Países Bajos: Health Action International, 2016. 

La cura siempre está en las manos de alguien más

But there, in that "open" solitude, transcendence is also waiting: the outstretched hands of other solitary beings. For the first time in our history, we are contemporaries of all mankind.

–

Cuando era niño, descubrí la existencia del sida por su omnipresencia televisiva. No entendía la biología, pero la gravedad con que se presentaban las imágenes impedía que pasara desapercibido. Es un recuerdo que tengo atado también a la atención con que mi madre observaba los noticieros, con esa mirada solemne reservada para las catástrofes. No sé en qué momento exacto transformé ese miedo ajeno en una misión personal: le dije a mi madre, con la certeza absoluta que solo se tiene a los seis o siete años, que yo me convertiría en la persona que descubriría una cura para el sida.

Es la historia de siempre, o al menos una variación del cliché infantil. Cuando eres niño algo te deslumbra —un camión de bomberos, un cohete espacial, una bata blanca— y decides que esa será tu vida. Recuerdo vívidamente a los maestros lanzando la típica pregunta en el aula: “

¿A qué te quieres dedicar cuando seas grande?

”. Mientras mis compañeros hablaban de pelotas de fútbol o estaciones de policía, yo respondía orgullosamente: “

” En ese entonces, no comprendía la tensión que mi respuesta generaba en los adultos. Siempre pensé que el rechazo se debía a mi intensidad amanerada. Con los años, entendí que había cosas de las que era mejor no hablar en público, y que mi deseo estaba, irónicamente, entrelazado con la condena social de lo que yo soy.

Nací en 1986, justo en la grieta. Pertenezco a una generación que creció con la globalización como un ruido de fondo, el zumbido de un viejo aparato electrónico que siempre estuvo ahí. En mi casa, el soundtrack lo ponían Lola Beltrán y Vicente Fernández, pero mis oídos se afinaron con las frecuencias de las Spice Girls. El inglés era un idioma extraterrestre, un lujo inalcanzable, y pasé años inventando las letras de sus canciones, dotándolas de una profundidad épica que nunca tuvieron. Pero esa es la magia perversa del capitalismo: te vende la pertenencia a crédito. Te ofrece un pedazo de su fantasma.

Para 1994, esa fantasía auditiva se había convertido en ley. El Tratado de Libre Comercio de América del Norte (TLCAN) era la firma en un contrato que no leímos, la promesa de que el progreso venía empaquetado en libre mercado. El politólogo Sung Hyong Rhee lo dice con una claridad que duele: el TLCAN hizo que el Estado mexicano se volviera «

demasiado extenso como para manejar problemas locales y demasiado pequeño para resolver los diversos problemas internacionales

». Nos quedamos en un limbo. Como un adolescente torpe, ni niño ni adulto, con responsabilidades de grande y derechos de chico. La élite gobernante, dice Sung, usó el tratado para «

institucionalizar las reformas económicas

». En lenguaje de barrio: amarraron con candado internacional un modelo que nos dejaba vendidos. No perdimos territorio como en todas las intervenciones norteamericanas del siglo XIX; perdimos algo más abstracto y poroso: el derecho a equivocarnos solos. El privilegio de imaginar un futuro que no fuera una copia al carbón del 

.

Recuerdo un símbolo perfecto de esa rendición: la exposición «

» en el Metropolitan Museum of Art de Nueva York en 1990. Una puesta en escena épica, financiada por la misma televisora que nos vendía la idea del México moderno. Ya de por sí era difícil, complejo, articular algo como 

. Aún así las pirámides, los códices, los dioses de un mundo prehispánico eran puestos en vitrina como las joyas de la corona para convencer a los señores del norte de que éramos una inversión segura, civilizada, exótica pero domable. Años después, cuando el último presidente mexicano del Siglo XX, Ernesto Zedillo, tuvo que pedirle a Bill Clinton un rescate de 20 mil millones de dólares, algo quedó más claro: nuestra historia se convirtió en el aval constante de préstamos, sí económicos, pero con consecuencias intelectuales, por nombrarlas de alguna manera, y que ha permitido el extractivismo de recursos materiales, sociales, culturales, espirituales, etcétera. Así se pudo establecer la siguiente dinámica de intervención: mientras el software de Adobe, por ejemplo, estaba protegido por leyes internacionales, los tejidos de las naciones indígenas, la memoria viva de comunidades enteras, quedaban expuestas al saqueo. Es el mismo viejo cuento: lo de ellos es «Arte» con mayúscula; lo nuestro, «artesanía», folklore, materia prima para el turismo intelectual. La conquista no termina; solo se actualiza. Ahora no llega en galeones, sino en cláusulas de propiedad intelectual.

Es difícil no trazar paralelismos bajo estas circunstancias. Es difícil no pensar cómo la invasión española de 1492 fue el inicio de un proyecto colonial eurocentrado que encontraría su expresión más depurada y expansionista en el Destino Manifiesto estadounidense. Como señala el historiador Reginald Horsman en su obra Race and Manifest Destiny, este ideario no fue simplemente una narrativa de expansión territorial, sino la construcción de una supremacía anglosajona que justificaba la dominación sobre mexicanos, indígenas y afrodescendientes como un derecho natural y racial. El colonizador del siglo XVI y el pionero del siglo XIX compartían la misma lógica: la de un cuerpo sano, fuerte y "civilizado" que tiene el derecho de apropiarse de territorios y someter a cuerpos considerados débiles, vulnerables o inferiores.

Esta expansión que ocupa y explota encuentra su continuidad en el cuerpo nacional desprotegido. Así como los patógenos europeos como la viruela encontraron en el siglo XVI un ecosistema inmunológico desprevenido, el VIH llegó en el siglo XX a un ecosistema político-económico igualmente vulnerable, tan abierto forzosamente al mundo por las reglas del neoliberalismo que había perdido sus defensas propias. La analogía va más allá de la metáfora. La antropóloga médica Vinh-Kim Nguyen, en The Republic of Therapy, argumenta que la gestión global del sida se convirtió en un nuevo terreno de gobernanza biopolítica, donde las potencias del Norte Global dictaban las prioridades y controlaban los recursos, a menudo relegando a países del Sur a un papel pasivo de receptores de “ayuda” en lugar de actores soberanos en su propia salud.

Este control se ejerce de formas muy concretas. Un ejemplo brutal es la presión constante de Estados Unidos y otras potencias occidentales sobre la Organización Mundial del Comercio (OMC) para limitar la producción y distribución de medicamentos genéricos de bajo costo. Como documenta la profesora de derecho Susan K. Sell en Private Power, Public Law, la industria farmacéutica estadounidense ha ejercido un lobby feroz para que se respeten estrictamente los derechos de propiedad intelectual (los Acuerdo sobre los Aspectos de los Derechos de Propiedad Intelectual relacionados con el Comercio o ADPIC), incluso cuando está en juego el acceso a medicamentos vitales. Un caso emblemático, analizado por Ellen 't Hoen en The Global Politics of Pharmaceutical Monopoly Power, fue la enorme presión que ejerció el gobierno de Bill Clinton en 1999-2000 sobre Sudáfrica, amenazando con sanciones comerciales si este país implementaba una ley que permitía importar y producir versiones genéricas asequibles de antirretrovirales contra el sida. Solo una campaña global de activistas logró que Estados Unidos retrocediera. De manera similar, India, que se convirtió en la "farmacia del mundo en desarrollo" gracias a su robusta industria de genéricos, ha enfrentado décadas de presión para que adecúe sus leyes a los estándares de propiedad intelectual estadounidenses, lo que encarece y limita el acceso a medicamentos para millones, como documentan también Ellen 't Hoen. La cura, una vez más, estaba en manos de alguien más, y ese alguien ponía un precio—no solo económico, sino político—a la supervivencia.

El VIH encontró por lo tanto un sistema de salud en México que ya cojeaba, debilitado por las políticas de austeridad que nos imponían desde fuera. México no podía pagar la investigación para una cura. Ni siquiera podía producir a tiempo los antirretrovirales. Tuvimos que esperar, con la paciencia del subalterno, a que el Norte decidiera enviarnos la salvación, que siempre viene con intereses y condiciones. Como escribe Enrique Díaz Álvarez, hablando del COVID pero describiendo una condición permanente, «

buena parte de nuestras sociedades se encuentran sumidas en guerras internas y asimétricas. Sin declarar. Silenciosas

». El VIH fue solo un nuevo riesgo añadido a la nuestra ya larga lista de supervivencia. Hoy, nuestra investigación científica se concentra en la epidemiología: contamos muertos, trazamos gráficas de la tragedia. No desprecio este trabajo, es necesario. Pero lamento la condena: somos los notarios de la pandemia, no los arquitectos de la cura.

Y sin embargo, lo más insidioso de esta dinámica no es lo económico, sino lo que le hace a la cabeza. La propaganda capitalista ha colonizado hasta nuestros sueños de salvación. De niño me perturbaba ver el episodio de Los Simpson donde los alienígenas Kang y Kodos exigen ser llevados con el líder mundial y son conducidos ante Bill Clinton. Maldije también en el cine al ver Guerra Mundial Z, donde la Ciudad de México es el primer estercolero zombi del mundo transmitido por un noticiero hollywoodense. Esta narrativa no es casual. Es la parte eugenésica del capitalismo. Nos enseña que, ante la catástrofe, la civilización que debe salvarse es la blanca, la del Norte Global. Nosotros somos el decorado sacrificial. El mensaje es claro: la inteligencia, el heroísmo, la solución, siempre están en otras manos.

La revancha del sur global comienza cuando dejamos de pedir permiso para tener sueños propios. El día de mi diagnóstico en 2017, la culpa me golpeó primero. Una culpa silenciosa y antigua. Pero con los años, la culpa se transformó en claridad. Esos sueños se habrían quebrado de cualquier modo. ¿

Cómo hubiera financiado mi investigación en un país donde los centros de estudio son islas de precariedad

? La pandemia de COVID-19 desnudó descaradamente lo que ya sabíamos: nuestro sistema de salud es un cascarón, sostenido con gritos y parches. Está podrido por dentro, carcomido por esa entrada violenta a la globalización donde perdimos la llave de nuestro propio futuro.

Y sin embargo, aquí está el giro. El giro que me devuelve al niño del principio. Tomo mi pastilla diaria, fabricada por Gilead, una farmacéutica que factura miles de millones al año. Y, curiosamente, sigo obsesionado con la cura. Pero ya no es la misma. Mi búsqueda ha mutado. Si bien el tratamiento antirretroviral para el VIH es un avance biomédico indudable, hay que mostrar también sus grietas: cómo puede dividir a la comunidad, cómo medicaliza e individualiza la responsabilidad, alejándose del cuidado colectivo que nació en la crisis del sida. La pastilla es una herramienta, pero no es la cura. No es mi cura.

Porque mi cura ya no es un compuesto químico. Es un acto de exorcismo político. Mi cuerpo está invadido por un virus y, al mismo tiempo, sostenido por un medicamento patentado en el Norte. Es un territorio ocupado. La verdadera cura, entonces, sería expulsar a Estados Unidos de mi organismo. Sacar su ideología de consumo compulsivo, su estética de la acumulación sin sentido, su falso mito del progreso lineal y su control sobre mi esperanza de vida. Quiero que mi cuerpo deje de ser una colonia.

Esta no es una metáfora. Es una práctica de imaginación política. Implica lo que Tomás Ejea Mendoza, hablando de política cultural, llama pasar de una gestión «discrecional» —autoritaria, vertical— a una «participativa». Es recuperar el derecho a imaginar y crear desde nosotros mismos, no desde el guión que nos asignaron.

¿Y cómo se hace esto? No hay manual. Pero hay pistas. Está en la «subjetividad radical» del testimonio que menciona Enrique Díaz Álvarez, en el acto de poner en juego nuestra palabra como supervivientes. Este texto es mi testimonio. Aquella fantasía infantil del científico que descubre la cura del sida era, sin saberlo, es el anhelo de una soberanía futura. Está en la solidaridad Sur-Sur, en buscar esas «manos tendidas de otros seres solitarios» de las que habla Octavio Paz. La cura no se encuentra en el aislamiento, sino en el reconocimiento de que nuestra vulnerabilidad es un territorio común desde donde podemos construir 

, es lo primero que nos roba el colonialismo. Recuperarlo es el primer paso de la verdadera cura. Deseo una cura como una forma de rechazo al norte global que habita en mi imaginario y en mi realidad. ¿Ustedes no?



Private Power, Public Law: The Globalization of Intellectual Property Rights. 

Cambridge: Cambridge University Press, 2003.

‘t Hoen, Ellen. 

I take my daily pill, manufactured by Gilead, a pharmaceutical company that grosses billions of dollars a year. And, curiously, I remain obsessed with the cure—but it is no longer the same one. My search has mutated. While antiretroviral treatment for HIV is an undeniable biomedical advance, its cracks must also be exposed: how it can divide the community, how it medicalizes and individualizes responsibility, moving away from the collective care that emerged during the AIDS crisis. The pill is a tool, but it is not the cure. It is not my cure. 