What Does It Mean to Remember AIDS?

What Does It Mean to Remember AIDS?

We’ve seen a flood of retrospective projects about AIDS—from books to dance to architecture and art. But who is being remembered? And why?


I walked past the New York City AIDS Memorial one scorching June day, and the scene took me aback. Usually when I pass by the site, located at Greenwich Avenue and 12th Street in downtown Manhattan, I see a few people sitting on the memorial’s curved benches, chatting, reading, eating a sandwich beneath its primary element: an abstract white steel canopy, composed of inverted triangles. Or I notice someone taking time to read the text carved into the paving stones, lines from Walt Whitman’s “Song of Myself,” which spiral outward and are often chopped off mid-phrase as they reach the park’s limits. It takes effort to trace the verses around and piece together their meaning, which is maybe as it should be. Paying homage to lives cut short ought to require more than a barely perceptible slowing of one’s stride.

But what broke my own stride that summer afternoon was the sight of several toddlers splashing happily upon the site’s water feature—a thigh-high, round, polished granite platform, covered with a layer of constantly flowing water. Their moms stood nearby with expensive strollers; a small dog jumped up to join the sloshing. Were they just standard New Yorkers, claiming space, as we do, for our many personal purposes? Or were they desecrating a site meant for more somber activities, like the men who infamously posted Grindr pics of themselves leaning against the stelae of Berlin’s Memorial to the Murdered Jews of Europe? Or, perhaps like those men, were they answering devastation with life-force, blessing the site with the vital chortles of gleeful children?

Yes to all of the above. Which is to note that, within six months of its unveiling on last year’s World AIDS Day, the memorial was doing what memorials always do: melting into the landscape for some people, while inviting the public to make for the present what meaning of the past it will. As the scholar James Young has written, monuments are “inert and amnesiac” in themselves and “dependent on visitors for whatever memory they finally produce.” Now, on the 30th World AIDS Day, the question of what it means to “remember” AIDS feels both old and pungently fresh, both rude (could any of us who lived through its ravages have forgotten?) and acutely pertinent (the pandemic rages on).

It’s not just the memorial, designed by Brooklyn’s studio ai architects, that provokes these questions. The last couple of years have seen a flood of retrospective projects about AIDS: a spate of new memoirs, dance and theater performances, social-media sites, museum exhibits, art shows, podcasts, participatory events, films, TV movies, a mini-series, narrative nonfiction, biographies, essays, and novels—too many even to name here. Three major programs took place in New York last season—at the Bronx Museum of Art, Danspace, and the Museum of the City of New York. An elaborate AIDS Monument is underway in West Hollywood. There’s even talk of an AIDS Museum in San Francisco.

In many ways, this outpouring makes sense. Those whose lives were gripped by AIDS in the 1980s and ’90s are at least in their 50s now. In whatever ways they were engaged—caring for the sick and dying; educating themselves about medicine and epidemiology; inventing and promoting safe sex and harm reduction; developing and performing fierce forms of horizontal activism to win changes to housing policy and drug research and approval processes; burying far too many friends and lovers—these survivors share a compelling need with the survivors of wars and other atrocities: to assure, while they still can, that their struggles and their dead will not be forgotten.

These projects are joining what the scholar Andreas Huyssen once called “an explosion of memory discourses,” a millennial trend to recall historical trauma in the public sphere, to demand that the world come to grips with its crimes against humanity. AIDS erupted just as this historical reckoning began with a wave of Holocaust memorials and museums (there are more than 60 of them in the United States alone) and that expanded globally over the last couple of decades. Such “memory practices”—as the burgeoning field of Memory Studies deems them—mean to perform several emotionally contradictory tasks: to stand as bulwarks against forgetting the worst our species is capable of, to pay respects to the fallen, to offer tribute to those who resisted, and, sometimes, to draw lessons for the future (and even, particularly in the United States, to provide an uplifting if spurious assurance that, in the end, goodness prevails).

Claiming a place for AIDS among the world’s human-rights cataclysms—a political assertion in itself—the new rash of AIDS memorialization employs some of the artistic motifs common to these global discourses. The memorial in Greenwich Village, for instance, shares the slashing angles of the Monument to the Victims of State Terrorism in Buenos Aires and of the Jewish Museum in Berlin. In New York’s lovely annual Last Address Tribute Walk (the fifth one took place in June), participants follow an urban pilgrim’s path, strolling to the homes where artists who succumbed to the disease last lived, stopping to say a few words and to hang a drawing and a rose on their door. The project—sponsored by the long-standing arts organization Visual AIDS and inspired by Ira Sach’s elegiac short film Last Address (2010)—parallels other grassroots endeavors to mark sites of loss. The Israeli group Zochrot installs signs around their country bearing the names of erased Palestinian villages. The artist Gunter Demnig, and those he has inspired, embed Stolpersteine—“stumbling stones”—into the street in front of the last chosen address of a victim of Nazi persecution, each stone bearing a brass plaque, engraved with the phrase, “Here lived…” followed by a name and the person’s dates.

But even as AIDS memorials echo the tropes of other commemorations, the unique qualities of AIDS also put unprecedented pressure on the overlapping questions that animate all grand public-memory projects: what and whom, specifically, to remember; where and when to remember them; whom to address; and how; and why. Such projects are always contested, but these disputes typically take for granted one essential fact that AIDS memorialization cannot: that by engaging in commemoration, a society is acknowledging (even if incompletely or in a deliberately distorting way) that the historical trauma occurred. There has been no such national reckoning with AIDS in America, no official recognition that in the face of a public-health emergency, the homophobic and racist indifference of the Reagan administration (not to mention of state and city governments, religious institutions, media, and too many families) exacerbated the suffering and hastened the death of thousands.

What’s more, AIDS is not over. In the United States, 1.1 million people are living with HIV—and worldwide, nearly 37 million. The Centers for Disease Control reported 6,721 deaths from HIV and AIDS in the US in 2014 and, in 2015, almost 40,000 new HIV infections. Most stunning, the CDC projects that if current infection rates continue, half of black gay and bisexual men and a quarter of Latino gay men will be diagnosed with HIV in their lifetimes. Already in dire situations compounded by racism, poverty, isolation, and stigma, many of them face grim consequences from the gutting of Obamacare and of Medicaid, the largest source of health coverage for people with HIV.

Meanwhile, the White House Office of National AIDS Policy appears to be defunct. Its website went dark right after Trump’s inauguration, and he has yet to tap anyone to lead it. Six members of the Presidential Advisory Council on HIV/AIDS resigned in June, one of them asserting that “the Trump Administration has no strategy to address the ongoing HIV/AIDS epidemic, seeks zero input from experts to formulate HIV policy, and—most concerning—pushes legislation that will harm people living with HIV and halt or reverse important gains made in the fight against this disease.” Those who remained wrote to the president in August expressing alarm that “the silence of the administration about our national strategy to control the spread of HIV and to care for those living with the virus represents a void of leadership at a critical time in our response to the epidemic.” Under these circumstances, it seems far worse than unwarranted to talk about AIDS in the past tense. As organizer Jaime Shearn Coan said at a panel titled “A Matter of Urgency and Agency: HIV/AIDS Now,” held just two days after Trump’s election—part of Danspace’s six-week “Platform” of performances and discussions about AIDS last fall—”Urgency just got a lot more urgent.”

Commemorative AIDS projects that speak in a pronounced retrospective register, then, typically draw a distinct outline around one specific period, the “plague years,” during which some 350,000 people died of AIDS in the United States. By standard accounts, this anguishing 15-year era began in 1981, when the CDC first noted cases of a rare type of pneumonia among five white gay men, and ended in 1996, when the carnage ebbed with the advent of antiretroviral drug cocktails that inhibit HIV, making the virus a controllable (though still often arduous) condition for those who can access and afford the medications.

The plague years are unusual among public-memory projects because they seem to have been commemorated almost from their start. Beyond memorializing individuals who died, people in the middle of the outbreak recorded the havoc it wrought upon their communities, as well as the movement that rose up to care for the afflicted and to shake medical, political, and other institutions from their deadly neglect. Fighting against homophobic panics that painted gay men as nothing but disease vectors, and against the invisibility or degrading portrayal of people with AIDS, activists recognized that a key part of the struggle involved representation. As the ACT UP affinity group DIVA TV proclaimed, “We are committed to making media which directly counters and interferes with dominant media assumptions about AIDS & governmental negligence in dealing with the AIDS crisis.”

This documentation, recorded in the heat of the emergency, has now become archive, much of it catalogued and maintained in libraries and community institutions: countless hours of videotape from demonstrations and meetings; files from AIDS service organizations; personal papers of artists, writers, and activists who perished; and more recently collected, vital oral histories, of, for instance, ACT UP members and of physicians, nurses, and scientists who played key roles in San Francisco.

Mass-mourning rituals carried out in the streets also made AIDS memorialization a public project during the plague years: for example, the Candlelight Memorial, which began with a march and vigil in San Francisco in 1983 and expanded into an annual international event; and the yearly Day Without Art, “a national day of action and mourning,” initiated by Visual AIDS in 1989. In 1987, the portable, popular monument—the NAMES Project AIDS Memorial Quilt—began serving as a traveling cenotaph for the fallen on both an intimate and an epic scale. Each individual three-foot-by-six-foot panel was designed and sewn by friends, family, or lovers to celebrate the life of someone lost to AIDS. Stitched together, the panels—overwhelming at 1,920 when the quilt was first displayed, and now numbering more than 48,000—constitute an emotionally unequivocal image of the staggering scope of the loss.

Framing AIDS commemoration within the plague years also means telling a story that is mostly about economically secure white gay men. For a variety of reasons, those years were largely (and problematically) identified with them in the first place. Their general good health and access to medical care in the early 1980s produced the circumstances for doctors to notice an epidemiological trend. Their dashed expectation that political and medical establishments would address the crisis ignited their wildfire of activism. Their participation in the art, theater, and publishing industries helped stream their responses to AIDS into visible venues. Today, even more important from a public commemorative standpoint, is that focusing on the plague years enables a narrative about a community, varied and contentious as it may be. Memory discourses typically address a collective trauma, tracing the destruction not just of many individuals but of a coherent collective, a culture. Gay men represent an identifiable, if contested, one. And hence, much of the memorializing continues to sideline intravenous drug users, men of color, and cis and trans women.

What distinguishes many of the recent memoirs, biographies, exhibits, and other projects from those created a quarter-century ago is precisely this sense that AIDS not only tore away specific people, it also shredded a social fabric. Recent books expand outward from the personal tragedies they recount; grieving for specific lives, they also pay homage to the gay culture that surrounded the men at the center of their stories.

Specifically, these works celebrate an unabashed sexual culture. Reading Cindy Carr’s masterful biography of David Wojnarowicz (Fire in the Belly, 2012), for instance, one comes to understand downtown Manhattan’s West Side piers as a site where Wojnarowicz’s sexual and artistic explorations were thoroughly intertwined. Similarly, Martin Duberman’s Hold Tight, Gently (2014) a meticulous and moving double-biography of the white singer-songwriter Michael Callen and the African-American poet Essex Hemphill, weaves each man’s art, activism, and erotic life into an integrated strand. Both Brad Gooch’s forward-driving memoir, Smash Cut (2015) and Dale Peck’s nonlinear Visions and Revisions (2015), evince a sexual culture of trust, consideration, and mutuality—qualities that contributed to the ethics of care that gay men (and their allies) exemplified in the individual and collective ways they tended to those who got sick. Without romanticizing it—but taking it matter-of-factly—these works recuperate the social carnality of gay urban life in the 1970s and ’80s, shaking off the conventional moralizing that has long burdened it with shame and guilt. As Sean Strub states in Body Counts: A Memoir of Activism, Sex, and Survival (2014), political and sexual liberation “were inseparable; one was achieved through the other.” These books challenge a prominent, mainstream narrative of progress that figures AIDS as the tragedy that jolted the LGTBQ community into growing up and—striding toward a traditional happy ending—getting married.

The momentous exhibit “Art AIDS America,” which previewed in West Hollywood and premiered at the Tacoma Art Museum in Washington State in 2015 before touring the country, with a three-month stop at the Bronx Museum of Art last fall (where it was amended, to address criticisms that it had neglected artists of color), makes a bold art-historical assertion. The show features works dating from 1981 to the present, by more than 100 different artists. Some are currently living with HIV; about a quarter were cut down by AIDS. It’s shattering to see represented in one show formidable artists like Robert Blanchon, Felix Gonzalez-Torres, Keith Haring, Ray Navarro, Hugh Steers, and Wojnarowicz, none of whom made it to age 40. On top of sustaining such losses, the art world was changed inexorably by the art itself, the show contends.

In his essay for the exhibition catalogue, co-curator Jonathan D. Katz argues that the epidemic drove artists to push against the limits of late-20th-century formalism. While “the aggressively homophobic discourse of a resurgent Religious Right, enabled by Reagan and Bush, and a much less vituperative but equally chilling theoretical discourse that worked hard to place expressive intent out of bounds” converged against artwork responding to AIDS, Katz writes, “artists successfully found a way to instrumentalize most of the key directions taken up by contemporary American art to that point and to lend them a peculiar form of political content and expressive possibility.”

The exhibition makes Katz’s case, with works in a range of styles and media that sometimes obliquely, sometimes blatantly, fill the once-cold idioms of postmodernism with real-world references and complex emotion. They range from what Katz counts as the first artwork to address AIDS—Izhar Patkin’s 1981 abstract painting, Unveiling of a Modern Chastity, in which red-lined craters pockmarking a mustard-brown canvas recall Kaposi sarcomas—to Kia Labeija’s recent large-format, ink-jet-print, color-saturated self-portraits, staged in the intimate spaces of a bathroom and bedroom, conveying both desolation and the willful glam to overcome it.

A painfully wistful oil painting by Hugh Steers, Poster (1990), one of few non-photographic figurative works, shows a young man in the foreground sitting at a table in Hopper-esque light, a “Silence = Death” placard leaning against one wall behind him and a blank canvas on an easel near the other. With short brush strokes and rich, moody color, Steers achieved a sparse sort of expressionism. One of the most forthright painters about the epidemic, Steers is the subject of a stunning monograph published by Visual AIDS last year.

Another Steers painting—Bath Curtain (1992)—was a centerpiece of the affecting exhibition at the Museum of the City of New York “AIDS at Home: Art and Everyday Activism” ªwhich closed in October). One man, sitting on a closed toilet seat, holds—perhaps grooms—the hand of a bony man leaning back in a bathtub, his face obscured by a shower curtain. As beautiful as it is melancholy, the painting projects a tenderness that is at the heart of the MCNY show. Though “AIDS at Home” includes many of the same artists as “Art AIDS America,” the MCNY exhibit makes a gentler argument for the political import of the domestic sphere and the downright radical legacy of the care-giving and kinship networks forged by the LGTBQ community. Focusing, in three sections, on caretaking, housing and homelessness, and family, it suggests how communal responses to AIDS remade all three realms.

Both exhibits make a point of keeping the story of AIDS going beyond 1996 by including works from the last 20 years, by programming events about contemporary issues, and, in the case of “AIDS at Home,” by including a coda that features a film about current AIDS activists. But, through no fault of the exhibitions themselves, it is hard—at least from the perspective of someone who lived through the plague years—not to encounter these elements as dutiful add-ons. The emotions churned by these shows are old, even traumatic, and to leap out of them into the demands of the present is like being awakened from a nightmare about your house burning down by the sound of real sirens in the streets. It takes a while, and an effort, to re-focus attention and realize that the piercing din belongs to a different narrative. Deborah Kass’s post-pop 2007 painting on view in “Art AIDS America” stingingly captures such ambiguity. On thick vertical stripes of white, green, yellow, and mottled rose, and with a gay wink at Stephen Sondheim, she has inscribed the words “Still Here.” Yes, some of us are. And so is AIDS.

Perhaps the less static genre of dance—a form that takes place only in present-tense—lends itself more nimbly to the complex temporal demands that “remembering AIDS” requires. Last season’s Danspace Platform, titled “Lost and Found,” managed best of all the recent commemorative events I saw to occupy multiple time zones simultaneously. As the co-curator Will Rawls wrote in his essay for the program’s catalogue, “we no longer have the option to live in linear or straight time. We circle back to retrieve, stay here to stake claim and move forward to imagine all at once.” That image of multidirectional motion around points of stillness evokes, too, the choreography of John Bernd, who died of AIDS in 1988 at age 35 and inspired the platform. A friend and colleague of Rawls’s co-curator, Ishmael Houston-Jones, Bernd was by many accounts the first artist to discuss his illness on stage; he once famously snuck out of a hospital bed, took a taxi to St. Marks Church (Danspace’s East Village location), performed his work, and cabbed back.

African-American and nearly 30 years apart in age, Houston-Jones and Rawls organized a diverse program that deliberately put class, race, gender, and generational differences upfront in the discourse of AIDS remembrance, here focused on the impact of AIDS in the experimental dance community. The opening weekend featured evenings dedicated to choreographers who had confronted AIDS in their work and their lives early on—Bill T. Jones, Neil Greenberg, and the late vogueing master, Willi Ninja. Other events included a community vigil and an improvisational performance organized by the writer Eva Yaa Asantewaa, featuring 20 Black women and gender nonconforming dancers from different generations and dance genres.

Of the events I caught, the most poignant and stirring was “Variations on Themes From Lost and Found: Scenes From a Life and Other Works by John Bernd,” a dance evening based on pieces Bernd had made (several of which I’d seen in the ’80s.) After studying Bernd’s notes, the bit of video that exists, and Houston-Jones’s own muscle-memory—he had danced in some of them originally—Houston-Jones (and his collaborators Miguel Gutierrez, Jennifer Monson, and Nick Hallett) created a new work. They built it out of Bernd’s choreographic patterns and the recurring motifs in his work: stomping motions, projections of his line drawings, a red chair, songs Bernd wrote. Seven dancers alternated in solos, duets, and group segments, mixing everyday and abstracted movements—sliding, falling, clumping, intertwining, shaking, a flirty frenzy. In one sequence, a man chases toward a shaft of light, stops short, turns around, and tries again, like a kid edging up to and then retreating from a jump off a diving board. Was this the mortal leap into eternity? Or into bright, vibrant health? Either way, the vital body on stage could not go there. And then, breathtakingly, did.

A number of the seven dancers had not yet been born when Bernd died, but they conjured his presence along with the playful and forlorn tones of his work by corporeally donning his movement vocabulary. One dancer, Johnnie Cruise Mercer, spoke in a post-performance discussion about being HIV-positive and experiencing an unsettling visceral identification with Bernd in a sequence of convulsive movements. And, he said, “I felt spoken to.” By dancing Bernd’s—and Gutierrez’s and Houston-Jones’s—work, Mercer spoke back.

The sense of dialogue between past and present, between plague-years survivors and contemporary young folks that “Lost and Found” fostered was an important corrective to a didactic, unidirectional notion of cultural transmission, a process that is especially complex for LGTBQ communities. To some degree, all tribes invent the pasts that give them the continuity essential to their self-definition, but queer culture must work doubly hard to assert a heritage because it is not passed down through ready-made familial channels. LGTBQ folks must seek out their queer lineage and stream themselves into it—thereby affecting the currents set in motion by those who have come before. AIDS commemoration assumes an especially multifaceted role in this process. While it addresses the general public, it specifically hails a new LGTBQ generation, which may sense the absence of untold gay uncles, literal or imagined, and search for ways to fill in broken links in a cultural and political genealogy (even as they still must navigate the possibility of HIV infection).

Some look for a usable past of valor and resistance in AIDS activism—a malleable model for organizing on a wide range of issues today. Little surprise that the earliest AIDS memory projects offered heroic narratives, with varied (and variously successful) accounts of ACT UP’s fervent years. (The organization, though much diminished in size and visibility, is still fighting.) Several films and exhibits from the early 2010s eulogized different aspects of AIDS social movements. More recently, David France’s engrossing, deeply reported nonfiction book, How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS, published last November, paints an expansive, detailed and textured activist landscape. Two books just released—Avram Finkelstein’s After Silence: A History of AIDS Through Its Images and Militant Eroticism: The ART+ Positive Archives edited by Dr. Daniel Berger and John Neff—detail the connection between art and collective action. (The authors are speaking about their work in New York for World AIDS Day.) The current show at the Whitney Museum of American Art, “An Incomplete History of Protest” features AIDS activism in one of eight sections that visually trace resistance to racism, misogyny, war, and abuses of power from the 1940s to the present. The posters and paintings in the AIDS section nearly pop off the walls with their punchy graphics or confrontational stances.

AA Bronson’s portrait of his friend Felix Partz (both men were part of the cheeky art collective General Idea) is a stunning example. Taken a few hours after Partz’s death in 1994, the billboard-sized photograph shows him with gaping eyes that fix the viewer in their gauzy gaze, his body gray and sunken against bright orange-and-turquoise pillows, colorfully patterned blankets, and baggy paisley PJs. As shocking as it is beautiful, as accusatory as it is heart-breaking, the image jolts one into the seismic swirl of personal-is-political bereavement as fury—the affective part of AIDS memorializing that may be the most difficult aspect of all to convey. Still, as much as those who lived through the plague years seek to impart what they endured, some millennials are leaning in to hear them.

That’s why—unique among the many already extant AIDS memorials across the United States, I believe—the New York City AIDS Memorial was initiated not by people who lived through the plague years but by two gay men who were in their early 30s when they hatched the idea, Christopher Tepper and Paul Kelterborn. Kelterborn has explained their motivation: “As young gay guys we had no real connection to that piece of what’s really our history” and, quite simply, those their ages and younger “need to know about it.”

Books, films, and other discursive forms may communicate information more directly, but, as professional urban planners, both men sensed the importance of a permanent structure in public space, which would draw both people intending to pay respects (in August, GMHC celebrated the 35th anniversary of its founding with a walk to the memorial) and those who encounter it by chance. As such, it bears the weighty responsibility to address a wide range of concerns. A plaque near the memorial’s entrance proclaims them—it “honors more than 100,000 New Yorkers who died of AIDS…recognizes the contributions of caregivers and activists… aims to inspire and empower current and future activists, health professionals, and people living with HIV…in the continuing mission to eradicate the disease.”

The memorial, stands at the western apex of a new, triangular, 16,000-square-foot park that funnels down from the intersection of Seventh and Greenwich Avenues (across the street from the salvaged segments of the “Tiles for America” project, a vernacular memorial to those lost on 9/11/2001 comprising tiles on which ordinary people drew or wrote their responses to the attacks). It occupies such a prime site of Manhattan real estate only because of the demise in 2010 of St. Vincent’s Hospital, which opened the country’s second AIDS ward (after San Francisco General) in 1984, and was considered the disease’s New York epicenter. A series of slate medallions embedded into the park’s paved pathways salutes the Sisters of Charity who founded the hospital and some of the historic health crises it handled. The park area was once home to St. Vincent’s handling center, where supplies were sorted and then sent into the hospital across the street through underground tunnels, also the exit route for dead bodies. I imagine that, like in an Elizabethan theater, ghosts now rumble from below the memorial. Perhaps, too, they haunt the luxury condos and townhouses that now occupy the hospital building, where a four-bedroom unit goes for $14.5 million.

The AIDS section of the protest show at the Whitney takes its title, “Mourning and Militancy,” from the pathbreaking 1989 essay by the scholar and activist Douglas Crimp, who called on his comrades to “recognize—along with our rage—our terror, our guilt, and our profound sadness,” to make room, amid urgent protests and organizing projects, for grief that was too often tamped down and even derided. Memorials—from Maya Lin’s Vietnam Veterans Memorial with its sunken, glossy granite walls to Michael Arad’s Reflecting Absence craters at the World Trade Center site, with water cascading down their sides—tend to assert themselves as places for solemn contemplation: They are symbolic collective grave markers, after all. The New York City AIDS Memorial—splashing toddlers and puppies notwithstanding—can’t help but function at least in part in the same way. As it provides a public focal point for grieving the thousands who died here and, too, for grieving the demise of an economically diverse neighborhood, it carries the potential to bring people together to learn about and respond to the social and political forces that produced these—and current—unnecessary losses. It has the capacity to serve as a site for memory and militancy. If, that is, people choose to use it that way.

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