It is early August 2022 and I am in San Francisco for a few days. In urban areas with large gay populations such as Los Angeles, where I’m from, and here, monkeypox is on the mind of all my gay friends, and a topic of great interest among my straight ones. As with the first days of COVID-19, this consciousness seems to have come out of nowhere. Only weeks ago monkeypox seemed like a minor issue. Now there are more and more stories of friends of friends who have contracted it—experiences of the worst pain ever, like broken glass scraping on skin, and of the horror when the lesions travel to the genitals and anal canal, where the pain is constant and agonizing.

For those of us who are sexually active gay men, the timing seems particularly cruel. It was only recently that the shadow of COVID lifted a bit, giving something of a return to normalcy in regards to sexual practices. Monkeypox spreads through close contact, particularly sexual contact, and many gay men have contracted it. Sex and physical intimacy are dangerous again. It’s time to once again limit sexual contact—to heave another sigh, accept the new reality, and try and find a way to get the vaccine.

It isn’t easy. I had registered for the vaccine in Los Angeles and in nearby Long Beach, but had been unable to obtain it. Now, in San Francisco, at a little after 8 in the morning on a Tuesday, a friend texts me that he’d gotten out of bed at 4:30 a.m. to get in line at Zuckerberg San Francisco General Hospital. Rumor was, they had a batch of monkeypox vaccine—maybe 600 doses, no one knows for sure—which they were going to start giving out at 8 a.m.

When my friend arrived at 5:30 a.m. there was already a two-block line, and he was lucky number 125—assured he would get the vaccine that day. His text urges me to get down to SF General ASAP. I pull on some clothes, call a Lyft, and rush out the door. I haven’t had my coffee yet, and I have a work Zoom scheduled later, but this may be my only chance.

When I get there, the line is down to one block long, and there is a moment of joy and relief when a smiling health outreach worker hands me a paper slip: number 531. I will get my first monkeypox vaccine dose that day! She also gives me a questionnaire to fill out and a small, bright yellow pencil, as if I were about to commence a round of miniature golf. I try to remember the last time I have used or even held a pencil. Filling out the form in faint graphite feels somehow inadequate to the importance of the moment.

The vaccine line snakes along slowly but constantly. It is a warm day in the city, and it’s nice to be in the sun. I look around at my companions in line. We are all of us gay men, most alone, some in pairs. I have flashbacks to the early days of the AIDS crisis. The desperate waiting for initial treatments, taking an early HIV test and waiting an unnerving two weeks for the result, struggling to get the first doses of combination therapies. We were stigmatized in those early days, and we fear we could be stigmatized anew.

And of course there are more recent flashbacks, to COVID-19—the confusion and anxiety for everyone seeking to get vaccinated and the glorious memory of getting that first dose, and the sense of liberation and newfound safety that came with it.

About halfway through the line, an earnest young activist hands each of us a card urging us to sign a petition demanding the government take more urgent steps to fight monkeypox, including making more vaccine doses available immediately. Later, near the vaccine site entrance, I come across a huge pile of petition cards discarded on a bench. Political apathy will always exist to some degree, but I wonder how much this castoff mound may also speak to the number of gay men who feel exhausted and overwhelmed in the face of a seemingly endless barrage of political and health threats.

Getting the vaccine goes amazingly smoothly. I walk to a numbered table where an intern in scrubs greets me warmly and transcribes the information on my penciled questionnaire into a database. I go upstairs to receive my vaccine. An older, jovial male nurse smiles broadly at me, offers me a seat, and asks: Which arm? The injection is painless, and I do not at first realize it is over. I see the nurse toss my used syringe into a gigantic red sharps box, on top of hundreds of other spent doses. There we are, thrown together, as we were in line.

I think of all the death and suffering among gay men that the organized, friendly health professionals at San Francisco General Hospital must have seen since the first days of the AIDS epidemic. In some ways this is just another response to a health crisis, offered generously and efficiently, without judgment, and mustering the greatest resources they are capable of providing.

I walk out of the vaccine facility with a lightness in my step, knowing that I am one of the lucky ones. There are still vaccines available today, just as there had been when my friend texted me a few hours earlier. I text other friends to tell them to come down here, and see other men doing the same. We are in this together—men who are still in many ways outsiders to mainstream American sexual culture, who have achieved a certain level of liberation in our celebration of the joy and intimacy of sex, and who, if we are lucky, have good friends who reach out in a time of crisis and tell us to get our ass down here right away.

The post I Stood in Line for the Monkeypox Vaccine. All Around Me Were Echoes of Other Epidemics appeared first on Zócalo Public Square.

The role of memory-keeper is a tangled one, as Rebecca Makkai discovered when she interviewed patients, doctors, nurses, activists, and historians who lived through the AIDS epidemic for her 2018 novel, The Great Believers. The book is a provocative read during the COVID-19 crisis as we find ourselves in a state of anticipatory grief, knowing that our world is and will be forever changed by this moment, but not yet knowing what picking up the pieces will look like—or who will be left to do so. Seeing the pandemic paralleled over the summer with epidemics of both economic inequity and violence against Black lives, we are watching every injustice of our society revealed in real time.

Will COVID contribute to another “Lost Generation”? That sobriquet—popularized by Gertrude Stein and her protégé Ernest Hemingway—is most commonly applied to those who came of age during the First World War. It also specifically denotes the Americans who flocked to Paris in the war’s aftermath to try to process their new reality through literature. But Makkai is more interested in the way F. Scott Fitzgerald uses it in his essay “My Generation,” about how the war completely transformed his peers:

We were the great believers. Well—many are dead, and some I have quarreled with and don’t see anymore. But I have never cared for any men as much as for these who felt the first springs when I did, and saw death ahead, and were reprieved—and who now walk the long stormy summer.

The novelist bestows the same title on those who witnessed and suffered during the height of the HIV/AIDS epidemic in the mid-1980s to early 1990s. The U.S. government’s initial reaction to AIDS, which was first documented in 1981, was to ignore, downplay, and dismiss it. Members of the Reagan administration mocked its severity, and the president did not even publicly acknowledge the disease until 1985. By the time he left office in 1989, more than 89,000 Americans had died of AIDS.

In the wake of such incredible loss, the role of memory-keeper is complicated by questions of survivors’ guilt, which Makkai found plagued many of her interview subjects: Did they deserve to tell these stories? Why were they the ones left to do it?

One subject felt guilty about sharing a deceased friend’s story because he thought that had his friend lived, they likely would have grown apart. He told Makkai he felt “unworthy being the keeper of his legacy.” But memories are the way that the dead live on—and it falls to the survivors to protect and share them.

The Great Believers centers around Yale, a gay man living in 1980s Chicago, whose friend group is decimated by AIDS. Employed at a Northwestern University art gallery, he helps acquire the art collection of Nora, a friend’s elderly aunt who studied art in Paris before World War I. Nora has her own reasons for bestowing her valuable collection. Among the pieces are those made by a former lover, an aspiring artist who suffered nerve damage in his hand during the war and committed suicide not long after. Over half a century later, Nora worries he will be lost to history. By donating his artwork alongside that of his better-known peers, she feels she is securing—and passing along—his memory.

Much of Makkai’s novel considers how memory and art are intertwined. How do “interruptions of history into our lives” impact people and generations, and how do we contend with those disruptions? Reading diaries from the WWI era, Makkai shared in an interview that she was struck by “severe trauma that was really not dealt with in any way at that time.”

The Great Believers is itself a piece of art crafted in response to traumatic events. As someone who grew up in Chicago during the AIDS epidemic, Makkai was stunned by how little the disease’s devastating impact on the city’s gay community had been documented. She spent several years researching the crisis and interviewing survivors to accurately capture the struggle in her novel. And in empathically transmitting the thoughts and experiences of her characters, whose lives unfold in times not necessarily experienced by her readers, her book becomes a fictional yet very real meta-memory keeper.

When we finally emerge from this current pandemic and period of protest, our vision will be altered and redefined by our memories. We will at once see the world as it was before and as it is after. As Makkai writes poignantly of present-day Chicago through one character’s eyes: “How could she explain that this city was a graveyard? That they were walking every day through streets where there had been a holocaust, a mass murder of neglect and antipathy, that when they stepped through a pocket of cold air, didn’t they understand that it was a ghost, it was a boy the world had spat out?”

In our near future, we will see the empty spaces, the lost potential of lives ended too soon and passions not pursued because so many lives were taken, either by disease or by violence. Speaking of her friends who were never able to return to their studies or cut-short careers, Nora says, “If I told you Picasso died in the war, you’d understand. Poof, there goes Guernica. But I tell you Jacques Weiss died at the Somme, and you don’t know what to miss.”

Whether on an individual or societal level, we will mourn what has been lost—both the tangible and ephemeral. Importantly, we will also see the world as it should be, for grief can be a politicizing force. The higher COVID-19 death rates among people of color, especially in the Black, Latinx, and Native American communities, expose longstanding inequalities in our health care system. The horror of a national death count that is fast approaching 200,000, and the Trump administration’s mishandling of the crisis—worsening the pandemic’s effects and unnecessarily costing lives—could further power the fight for a national health care system and a more equitable economy and justice system.

The fight for health care justice is a battle that those who lived during the AIDS epidemic helped forge. The Great Believers chronicles the cruelty of the Reagan administration’s inaction and that of the bureaucratic health care system, as HIV+ characters struggle to afford drug treatments, grapple with insurance companies to cover their treatment, and agitate for the government to recognize and respond to the crisis.

In encouraging Yale to come to an organizing meeting, a friend tells him, “Everyone I know who isn’t political, it’s just because they haven’t tapped into their anger.” Later, that same friend convinces Yale to attend a demonstration, where he puts his own body on the line. The action Makkai portrays in her book actually unfolded in the streets of Chicago, organized by activist group ACT UP in April 1990. It targeted the American Medical Association’s policy against national healthcare and successfully campaigned for changes at a local Cook County hospital, where beds had been sitting empty due to lack of funding and where female AIDS patients had been denied care. Yale’s politically active friend, a young, white male lawyer, highlights the role of solidarity in the battle: “If we’re not fighting for poor black women who need beds at County … we’re as bad as the fucking Republicans.”

There are lessons to be learned from their activism, ones Makkai says resonate with the current struggles: “[W]e can see … how to support each other through crisis, how to pace ourselves for long-term survival, how to both survive and fight—that you can take care of yourself and fight for yourself and others at the same time.”

For all the loss and heartbreak that The Great Believers lays bare, the core of the novel proves ultimately hopeful because it underscores that we are the memory-keepers of this moment. What we choose to remember and how we choose to respond will define our own legacy.

The post The Anticipatory Grief of Living Through a Pandemic appeared first on Zócalo Public Square.

What changed my mind is that I immigrated to Finland at age 24, finding myself at the opposite end of the world literally and figuratively. During the 22 years I lived in Finland and worked in a variety of jobs from the parks department to a social work professor, I experienced a welfare society that strove to support social cohesion through robust public institutions and mutual solidarity. Instead of each person pulling herself up by her bootstraps, everyone was included in the national health system; all mothers and babies attended the same maternal health centers. There was a high level of trust in the police and the government.

When I became the representative of Finland in the European Union Project on AIDS & Mobility, I began to learn more about how European societies worked with some of the most difficult social issues, such as drug use, HIV transmission, and migration.

Rather than trying to reduce drug use, Finland and other countries aimed for “harm reduction,” helping users to lead healthier lives, and to reduce the side effects of injection drug use like HIV, Hepatitis C, and bacterial infections from shared needles. In the 1980s Amsterdam and Liverpool started needle exchanges with the simple idea that if drug users used sterile syringes for every injection, then the risk of infectious disease transmission would be reduced. Needle exchanges were quickly integrated into social and health care systems in Western Europe.

For a long time Americans saw syringe exchanges as enabling drug abuse. In 1985 doctors proposed a needle exchange in New York City and a clinical trial was begun three years later, but it provoked a strong reaction from law enforcement, politicians, and a Harlem city councilman, who termed the project “genocide.” Over the years, this and other studies have shown that needle exchanges reduce HIV and hepatitis infection significantly, encourage some users into drug treatment, and do not increase drug use. They have increasingly become part of public health projects despite a long-running federal ban on syringe exchange funding, which was only lifted under President Obama in 2016.

When I returned to Fresno in 2007, drug use was high. By 2008 the county was sending people to drug and alcohol treatment programs—often court mandated—at twice the rate of California as a whole.

 
I visited the Fresno Needle Exchange, and what I found shocked me. Instead of the orderly clinics with services that I knew from Europe, a 1963 school bus housing a mobile medical clinic was parked at the side of a dead-end road and the needle exchange was on the sidewalk.

Over the past 22 years, Fresno’s needle exchange has gone in and out of legality. Fresno County’s board of supervisors last outlawed it in 2011, saying it “enabled” drug use. But later that year Gov. Jerry Brown signed two bills that legalized all exchanges in California, as well as permitting pharmacies to sell syringes, on the grounds that reducing the harm of needles is proven to limit the spread of HIV and Hepatitis C. The ongoing legal tussle has kept the exchange, which is staffed by volunteers, from getting a permanent home and offering more services. Still, the exchange saves Fresno money: A 2014 study found that every dollar invested in needle exchanges prevents more than $6 in HIV health care expenses.

I arrived as the volunteers were setting up, and when the exchange opened, people converged from all directions. One was shoeless, another pushed a bicycle, another purred down the street in a black BMW. Here, people who spent most of their lives in the shadows of shame were greeted and helped. And they responded with real moments of contact and caring. One woman said she was proud of her son starting college, another talked about the puppy she was adopting.

I saw a city that didn’t show much compassion for its drug users contrasted with a community of volunteers and users that really did care about each other.

I began volunteering at the needle exchange and eventually conducted 33 long interviews with clients for academic research. I wanted to understand how people explained their path to addiction, how they found the needle exchange, and what it brought to their lives.

All of my interviewees had found their way to the needle exchange through word of mouth. Here they were not treated, as a homeless woman said, as “a gutter person.” Most of the interviewees spoke about being grateful for a compassionate place that provided the information and support they needed to be safe. One woman talked about her reluctance to seek health care: “…a lot of us don’t want to tell doctors that we’re using because you get treated bad.” Clients watched out for each other and often dug deep to offer dimes and quarters as donations to keep the exchange running.

Dallas Blanchard has coordinated the all-volunteer exchange for 21 years.

 
Through humor and nonjudgmental presence, the volunteers and the doctor at the exchange created a safe space for drug users to imagine new lives. For some this first act of caring for themselves—using a clean needle each and every time they injected—led down the path to recovery. During this time, I was teaching a master’s degree class in social work at Fresno State and I learned that one of my students had come through the exchange on her way to sobriety. She said that learning to care for herself at the exchange led to a belief that she too could be somebody.

Many of my informants had traumatic childhoods marked by alcoholic parents, poverty, and abuse. One woman said she started drinking when she was 10 years old because “with the alcohol I could deal with the stepfathers and with my mother’s yelling and screaming and denying and deal with the brothers and sisters I was raising and didn’t want to raise.” Another woman talked about turning to heroin to numb the mental abuse she endured from her husband. One man talked about his loneliness after his divorce and the back pain from his roofing job that led him to the needle. Yet, none of the informants blamed anyone but themselves for their situations. “It made me feel so good. It only took one time,” said one. “I’m not stopping. I can’t stop, so…” said another.

A growing body of research indicates that trauma and stressful incidents may be significant factors in chemical dependency. Kaiser Permanente and the Centers for Disease Control measured significant adverse childhood experiences using a scale of 0-7 (lowest to the highest). They found that a man with a score of 6 was 46 times more likely to become an injection drug user than a man with 0.

During the 20 years that I was away from Fresno, the city has changed: The population has more than tripled. Fresno now ranks last among California’s ten largest cities for life expectancy, median income, and educational attainment. Social and health services are stretched to their limits. The dominant ideology is still that people should pull themselves up by their bootstraps and face the consequences of their own poor choices.

Yet, when listening to the stories of needle exchange clients, I often felt that a stronger sense of common responsibility, more vigorous efforts at prevention and early intervention might have helped to alter their life courses. My time in Finland helped me imagine an alternate Fresno, where people were not trapped in their dysfunctional families, or found the strength and means to leave an abusive relationship, or got counseling for grief after a divorce. Could more social services and a different ideology change life in Fresno?

It’s clear that the space to imagine a new life can change lives at the Fresno Needle Exchange. Maybe the city could likewise start to reimagine itself as one where the tremendous energy and compassion of citizens, and their capacity to care deeply for one another is given more support, so they in turn can support the city as it grows.

The post I Had to Go to Finland to Imagine How to Fix Fresno appeared first on Zócalo Public Square.

But these accolades aren’t the main reason I teach a seminar focusing on Ashe’s life. The trajectory of this tennis player’s life—from his birth in the Jim Crow South of the 1940s to his untimely death from AIDS in 1993—brings much of the American century to life for my students, with all the complexity that gets lost when we think of these people solely as the achiever of milestones. And, perhaps because recent history is often the most neglected history, it is also the vital missing link in explaining to my students where we’re coming from as a society, and providing them with exemplars as they face similar challenges in their lives.

Even though Ashe’s name is mentioned by every campus tour guide and promotional video of any length about UCLA, and even though students go to a wellness center named in his honor when they are sick, students were quick to admit on their first day in my class that their understanding of Ashe’s legacy was confined to a hazy notion that he was the black man who clicked off a bunch of firsts in the world of tennis. Some knew that he had died of AIDS; some knew that he was a social activist.

In my class, we start Ashe’s life journey in the 1940s, with the family home in Richmond, Virginia, where his industrious and devoted father accepted a job as caretaker for Brook Field, Richmond’s only park for negroes, in the vernacular of the day. The job, which came with a house and proximity to tennis courts, embodied the era’s “separate but equal” doctrine.

In Richmond, blacks could not say that they were denied the amenities afforded whites. Their park had a tennis court, too, although the trappings of tennis were largely unattainable to most of Richmond’s African-American community. But sports became the special lubricant—and motivator—in Ashe’s life. Young Arthur thrived by having tennis courts in his backyard and the attention of one of the only black coaches of the era, but he beat his local opponents too easily. Since the segregated school system precluded him from playing whites, his father agreed with a coach’s recommendation that his son should spend his senior year in St. Louis, where race would not restrict his range of tennis opponents.

Today, most parents are loath to move for fear of incurring the wrath of teenagers separated from their friends and the rituals of graduation. But Arthur Ashe, Sr.—Arthur’s mother had died when he was six—split up his close family of three in order to expand Arthur’s opportunities. And it worked. A stellar senior year in St. Louis positioned him for offers of tennis scholarships. Inspired by the example of Jackie Robinson and wooed by legendary tennis coach J.D. Morgan, Arthur Ashe entered UCLA in 1962.

In Ashe’s undergraduate days, the word service did not evoke SAT tutoring programs or planting community gardens. Service meant the armed forces, and male college students lived with the knowledge that they could be dispatched overseas quite readily. In addition to perfecting his tennis game and focusing on his studies, Ashe enlisted in the ROTC. This commitment required a post-graduate obligation that Ashe fulfilled at the next stop on his life journey: West Point. His superiors allowed him to advance his tennis game.

His younger brother Johnnie, on the other hand, was in Vietnam, like so many other young men of his generation. In fact, fearful that Arthur might have to do a tour of duty, Johnnie re-enlisted, making the case to his superiors that if one Ashe brother was getting his mail in Vietnam, the other should be allowed to stay stateside. Safe from enemy fire, the older brother Arthur was a second lieutenant who worked as a data analyst and tennis coach at West Point.

While Ashe was playing tennis and pursing his military obligations, other African-American young people were engaged in direct political action and at times he faced withering criticism for not joining in the struggle. Indeed he was booed at a speaking engagement Howard University because the students were incensed that he had played tennis in Johannesburg, South Africa.

Ashe’s complex relationship with South Africa would come to exemplify some of the schisms in how Americans of the civil rights era thought about racial progress. During that era, any ambitious tennis player was expected to prove his or her mettle in the prominent South African matches. Even though he was a college graduate, a prize-winning tennis player, and member of the American military, Ashe could not get a visa to play there until the 1970s. His decision to play there after he finally succeeded in obtaining a visa riled both members of South Africa’s white apartheid establishment as well as anti-apartheid activists here at home. Ashe shared their disdain for what he called “the abyss that is South African apartheid.” During the years when he transitioned from being a tennis player to being a tennis coach, he worked behind the scenes advocating that the United States exert its influence towards dismantling apartheid. When he took more public stances, such as getting arrested outside the South African Embassy in Washington in 1985, the bad publicity likely contributed to his being fired as captain of the Davis Cup team.

Unbeknownst to him, tennis fan Nelson Mandela was following his career and reading Ashe’s books in his cell on Robben Island. Upon his release, he identified Arthur Ashe as the American he most wanted to meet.

He encountered controversy again in 1992 when he announced that he had contracted HIV, the virus that causes AIDS. Ashe had become infected years earlier from blood transfusions necessitated by heart attacks at a relatively young age. But this was an era when the stigma against HIV and AIDS was severe—because it was assumed that only gay men or IV drug users got the disease. Ashe’s ability to deal with his diagnosis in private was shattered when USA Today shared with him its plans to “out” his HIV status, forcing him to announce his illness in a hastily arranged press conference. A colleague down the hall from me stopped buying that newspaper the day she heard about its role in Ashe’s life, and she still holds a grudge more than two decades later. But Ashe didn’t shy away from his association with the disease once the news became public: He was an activist to the end. Ashe dedicated himself to AIDS awareness and used his visibility to draw attention to the plight of black South Africans and Haitian refugees.

When I contemplate the character traits I want this generation of college students to embody, Ashe provides a good checklist. Not only was he a tennis star of the first order, he also wanted to help the next generation, establishing junior tennis leagues and coaching the U.S. Davis Cup team. Ashe took being a student-athlete, and not just an athlete, quite seriously throughout his life, and wanted to influence how the public looked at African-Americans. He crafted the first major study—three volumes in length—of African-American sports history. He also penned numerous op-ed essays and several other books, including his best-selling autobiography, Days of Grace. He was a shrewd businessman who knew how to take the comparatively modest tennis purses of his day and invest them prudently. He married once and well, to Jeanne Moutoussamy-Ashe. Once engaged in an issue, he persevered.

To be sure, much has changed since Ashe’s time: My students don’t have to worry about a military draft, and if they are so unfortunate as to be diagnosed with HIV, there are medications to extend their lives. But their times are turbulent as well; issues of race, class, war, and disease continue to shape 21st-century life. If they can learn from Ashe’s life how to sustain personal and professional integrity, how to handle setbacks with grace, and how to play the long game, they will lead lives of distinction and purpose.

The post What the Life of One of the First Black Tennis Superstars Can Teach Us About Playing the Long Game appeared first on Zócalo Public Square.

So when Kang asked me about New York, I was not sure what to say. I was traveling in China for the summer researching my next documentary film, and I was meeting him, his wife, and another young man for the first time over dinner. Henan cuisine does not have a great reputation in China, and the sputtering lights and the grimy walls of the restaurant made the steaming dishes even less appetizing. Kang played with his smartphone nonstop as the conversation progressed in fits and starts.

He operated extractors on construction sites for a living, so he was tanned like tar. His dark pants, rolled above his skinny ankles, were splattered with mud stains. I mentioned the Empire State Building, the Statue of Liberty, and the sunny summers in Central Park. Lots of Chinese tourists go there now, I said, and the rich ones buy real estate in cash and Louis Vuitton in bulk.

“Why is New York so famous?” he asked. His wife, Fei, turned toward me but avoided meeting my eyes. She had the delicate features of a city girl, but her dress was of the simplest and cheapest kind, normally associated in Beijing with a migrant worker newly arrived from the countryside.

“New York,” I stammered, “is a place of many different people, still full of opportunities for those who want to make their lives better through hard work.” Then I stopped talking and worked on my beer, since America felt like a topic entirely out of place, in front of people who might be stuck in this dirty little town for their entire lives.

When I met my friend Chung To in Beijing at the beginning of the summer, he encouraged me to visit Shangcai. Chung To heads the Chi-Heng Foundation, a nonprofit group assisting children impacted by AIDS. Initially I was reluctant to go. I told him I wasn’t looking for sad, teary stories—those have been done. I wanted to continue my exploration of China’s growing aspirations, as in The Road to Fame, my latest film about students at an elite acting school in Beijing.

Then you definitely need to go to Shangcai, Chung To insisted.

But Shangcai, geographically in the center of the Middle Kingdom, didn’t seem at all representative of the new, prosperous, and ambitious China. At first glance, Kang and Fei couldn’t be more different from the urban youth I had come to know. In big cities, young people don hipster fashion from Japan and South Korea, watch American TV shows online, and chatter as loud and fast as their American peers. They want the latest iPhones, a nice apartment, and a fancy car, and to live a life full of the material riches portrayed on American TV shows. Here in Shangcai, the young people appeared tentative and ill at ease, like underdeveloped kids still in high school, or even middle school.

What sets the young people of Shangcai apart is that they grew up not only in poverty, but also in the shadow of AIDS. In the 1990s, villagers around Shangcai sold blood to commercial–and mostly illegal–blood collection agencies to make ends meet. Needles and tubing were reused, and once the desirable plasma was removed, red blood cells were pooled and reinfused to the donors to prevent anemia. Thousands were infected with HIV. Newly infected mothers passed the virus to their babies through childbirth and breastfeeding, and kids and adults contracted HIV after receiving contaminated transfusions in hospitals. In 2000, the HIV infection rate in Wenlou village outside of Shangcai was as high as 65 percent. People started dying, the healthy shunned the sick, and the government clamped down on any reporting of the dire situation around here.

Kang was diagnosed with AIDS in 1999, when he was only 5 years old, having contracted the virus from his mother. His mother sold blood to help pay fines imposed by the village family planning agency. Despite the Communist government’s long-standing one-child policy, his father insisted on having a son, even though he had already had four girls. Three years after his diagnosis, his mother passed away, and Kang grew up going in and out of hospitals. Both of his wife’s parents had been similarly infected from selling blood. The other young man at our table, who fixed computers for a living, had contracted the virus through a plasma transfusion in his early teens.

I felt awkward prodding them for their sad stories, so I tried some small talk, but that soon fizzled. It’s impossible even for an optimist to find hope where none apparently exists. But things in Shangcai have improved some. The government eventually acknowledged the AIDS epidemic in Henan, allowed reporters to investigate, and instituted free prevention and treatment programs. Commercial blood selling disappeared. Despite early corruption in the distribution of free drugs, treatment programs seem to have brought the disease under control. HIV patients now receive government subsidies, and warily, local governments have allowed groups like Chi-Heng to help children infected with HIV or orphaned by AIDS to go to school. But many have died, and survivors have been scarred. Nowadays, few reporters visit Shangcai, and contrary to Chung To’s promises, everyone seemed eager to leave these sad, teary stories behind.

The next morning I woke up late and went to Kang’s home in the village with Liu Li, a staff member from the foundation conducting routine visits to families afflicted with AIDS. I thought of backing out, but the trip had been pre-arranged. It was a clear and muggy July morning. Dirt roads cut through the village, their surface chopped into deep ridges by past rainfalls. The cicadas chirped merrily and, surprisingly, most of the houses looked well-kept and clean. As soon as we arrived, Kang’s father and stepmother–who had lost her ex-husband to AIDS and was herself HIV-positive–served us tea and cleaved open a watermelon. It was grown on their own land. “All organic,” they emphasized.

Chewing on watermelon, Liu asked about the patients’ drug regimen. Kang muttered something about the drugs’ side effects. Here in Henan, the free drugs do not include the newest, more expensive kind. So whenever the medication made him sick, Kang stopped taking it, which affected his white cell counts and made him a frequent visitor to the hospital. Fei said her own mother had stopped taking the drugs altogether. She had begun believing in Jesus, like many desperate souls in the countryside, and decided to leave her fate to the Almighty.

Liu gently reprimanded them and then asked about Fei. “Oh yes, of course she’s taking her drugs religiously.” Everyone chimed in eagerly, the loudest being Kang’s father. He was half-naked and his body, massive and sagging, was heavily tanned from farm work. He pointed at Fei’s tummy–that’s all we worry about now.

Kang frowned slightly and stole a glance at his father. He and Fei had only been married for six months; Fei had gotten pregnant by accident two months ago. At dinner the night before, he’d mentioned not having wanted a baby so soon. His wife had wanted to travel and see the world a little first. But in the village, 20 was considered the right age to procreate, and no one was sure how long Kang’s condition would remain stable.

Liu reiterated that with the cocktail regimen, it was very likely the baby would be HIV-free and live a long and healthy life. A big grin appeared on Kang’s father’s face. “I want at least three grandkids,” he said. Kang frowned again and mumbled, “One would be enough, ’cause it’s expensive now to raise a kid properly, if one wants to raise a kid like the city folks.”

The old man ignored him. He said that during the years when Kang was very sick, in and out of intensive care, he sold everything to pay for his treatment. He stopped working and started drinking. He said he had given up all hope. Now–he pointed at Kang excitedly–his son was healthy again, and a grandkid was on the way. The bloodline was being continued. He might enjoy work again, enjoy life again. His family owned about one acre of land, and he rented another two from neighbors, which he farmed all by himself. There were some in the village who milked the government’s AIDS-care programs so they didn’t have to work. “Dishonorable,” he said. “In this family”–he waved his hand for emphasis, a big slice of watermelon held firm between his fingers–“we have to rely on our own hands and do honest work.”

The conversation grew spirited, and a cool breeze wafted through the room. I surveyed their animated faces and their bare-bones living room, and marveled at the new table and chairs built of sturdy wood. Here, in an average village house, a poor Chinese family has struggled with HIV for 15 years. Their hearts have been broken, and their families have died. Outside the village they are still being discriminated against, forced to obfuscate about their origins. Yet tenaciously they hold on to the hope of a better life, like other Chinese who had to wipe away the scars of the Cultural Revolution, or the older generations who migrated to America for the promise of the Gold Mountain.

Before I left, Kang and Fei showed off their wedding photos. Like all marrying couples in China, they had hired a professional cameraman to take glamour shots. With the help of Photoshop, Kang’s face, tarred by the sun and scarred by lesions of Kaposi’s sarcoma, appeared clean. In their brightly colored costumes, he and his wife looked just like any other young Chinese couple, hopeful, unhindered by past tragedies. I remembered what Chung To had told me at the end of our coffee: People like them are the foundation of a nation’s dreams.

Walking us back to the road, Kang and Fei held their hands together like high schoolers fresh in love. Kang asked if I felt tired traveling all over China finding new stories. I said no. To be able to hear their stories is a privilege in itself.

“I wish I could do what you are doing,” he said, “going around the world and seeing new things.”

“Why couldn’t you?” I asked, wondering even as I blurted it out whether that sounded too insensitive.

He thought for a bit. “Indeed,” he replied, “why not? Once we have had the baby and saved enough money, we’ll go travel. Maybe we’ll even travel to New York to visit you, to see what the fuss over America is all about.

At that moment, squinting his eyes in the sun and waving at pedicabs to take us back into town, he sounded just like anyone, in Shanghai, Beijing, or New York, whose future was not guaranteed yet remained well within reach.

The post AIDS in the New, Prosperous China appeared first on Zócalo Public Square.

As a Ph.D. candidate in history at University of California, Irvine, I study the history of patient advocacy in the United States. I focus on AIDS. My work is amorphous by definition: the history of patient advocacy, at least as I see it, includes the history of the body and medicine, the history of gender and sexuality, death and dying studies, and disability studies, to name just a few of the disciplines my work brings together. Ultimately, I’m trying to describe the ways in which people with illnesses and disabilities have defined and defended themselves in the public sphere.

The first trailer for Dallas Buyers Club thrilled me, and I made it my business to catch it during opening week. The film tells the story of homophobic rodeo cowboy Ron Woodroof, who, upon receiving a diagnosis of AIDS in 1985, started smuggling unapproved pharmaceuticals into Texas to treat his symptoms—and those of other AIDS patients who joined his “Dallas Buyers Club.” The movie more than lived up to my expectations: It’s artfully made and raises many of the complicated questions of patient identity and politics that my scholarship engages.

However, the film also produced a wide range of responses—including intense criticism—from the folks who bore the brunt of the HIV/AIDS crisis of the 1980s and 1990s. Many who knew Ron Woodroof say the story gets him wrong, while others question the politics behind choosing to tell the story of a straight white man at all. Glenn Dunks of Junkee, for example, recently characterized the film as “heterosexual white-washing” of the HIV/AIDS crisis. Others take issue with the way transgender women are represented in the film.

Several former members of the AIDS Coalition to Unleash Power (ACT UP)—the most influential direct action AIDS advocacy group of the 1980s and 1990s—have also been critical. Activist Patrick Mulcahey wrote in The Huffington Post, “Dallas Buyers Club steals our story and tells it like we weren’t even there.” Many people intimately familiar with the AIDS crisis agree with Mulcahey that focusing on one man (and a white, heterosexual man at that), leaves them, their activism, and the people they loved and lost out of the story of the AIDS epidemic.

Given these (legitimate) concerns, is this a movie I should support? It’s a hard question, but not an unfamiliar one. I frequently lose sleep asking myself where my own academic work will position me in conversations about the way we remember the AIDS crisis, in part because I was born in 1986; I was too young to participate in the movement I claim to be an expert on.

I’m not haunted by the dead. But I am accountable to the living. The survivors of the crisis are not only still alive but also are—on the whole—relatively young. They are also still pretty pissed off. And rightfully so.

That’s the worst nightmare of many historians. Civil War widows can’t talk back, get angry, or write letters. The stakes of my work are ever-present, looking over my shoulder, forcing me to question everything I think I know. It’s uncomfortable, but I’m very lucky to be surrounded by survivors, particularly given the carnage of the AIDS crisis, which continues both here and abroad.

With all stories society deems worthy of remembering, there comes a moment when history and memory collide. World War I recently completed the transition from memory into history. In those early moments, though, historians are like relay runners handing off a baton: terrified we’ll drop it. In many ways, I’m running the same race as the artists behind Dallas Buyers Club.

Problems aside, Dallas Buyers Club manages to capture a facet of the experience of AIDS activists in a way that no other film has. Director Jean-Marc Vallée almost viciously denies his audience the time or space needed to process the emotions the film’s stars—Matthew McConaughey and Jared Leto—so expertly evoke. The film moves too fast. As a result, the viewer experiences—albeit only for two hours—the numbness, emotional exhaustion, and mélange of disconnected thoughts and feelings that hundreds of thousands of Americans lived with during the HIV/AIDS crisis of the 1980s and 1990s.

The story reflects equally deliberate choices. The real Ron Woodroof was a rodeo enthusiast, not a participant. The film uses his bull-riding as a metaphor for the experience of living with AIDS: holding on, waiting desperately for a payoff that, deep down, he knows will never come. Falling off the bull is as inevitable as it is unthinkable, and the constant struggle to hold on has real costs.

In 1988—shortly before his death—AIDS activist Vito Russo told fellow members of ACT UP, “We’re so busy putting out fires right now that we don’t have the time to talk to each other and strategize and plan for the next wave, and the next day, and next month, and the next week, and the next year.” Dallas Buyers Club tells Woodroof’s story in a way that helps those of us who weren’t there understand what it was for Russo and others to live the AIDS crisis, to jump in the chute, and ride for your life.

That’s why I want Dallas Buyers Club to win best picture.

I spend a lot of time thinking about the politics of memory, about whose story gets told, and why. The past few years have seen a new wave of historical and artistic production around HIV/AIDS, including documentaries like We Were Here (2011), How to Survive a Plague (2012), and United in Anger: A History of ACT UP (2012). Later this year, HBO will release its production of ACT UP activist Larry Kramer’s play The Normal Heart. I love Dallas Buyers Club not because it doesn’t have problems, but because it exists in concert with these other narratives, and because its success may mean the green-lighting of more movies about the AIDS crisis, movies that perhaps address its blind spots.

Following the reactions to Dallas Buyers Club and thinking through my own feelings about the film helps me better understand my role in the process of collective memory making. I wasn’t there, I don’t have all the answers, and I know that some of the opinions I voice, and some of the stories I tell, will meet with the disapproval of the men and women who inspired me to do this work. I am equally aware that my voice adds something to the conversation, an analytical distance that those who’ve waded in rivers of death shouldn’t have to muster. Bumpy as the transition from memory to history is, the alternative is silence, and, as ACT UP famously put it, “Silence = Death.”

I’m going to try really hard not to drop the baton.

The post Why I Want ‘Dallas Buyers Club’ to Win Best Picture appeared first on Zócalo Public Square.

More than two decades later, my copy of the book is dog-eared, the pages loose, with ink-smudged Post-its jutting out from the margins like yellow exclamation points. The book I spied that day has become my bible. It is stuffed with essential texts by activist authors, reflecting the Spock-ish analytical sensibilities of its editor, the art critic and early ACT UP member Douglas Crimp. Among the contributors is medical historian Paula Treichler, who writes of the irrational meanings attached to AIDS, and Jan Zita Grover, who painstakingly defines the “keywords” associated with AIDS, from “carrier” to “risk group.”

For me, the most durable of the essays in the volume is Crimp’s introduction, in which he goads us to stop talking about art of the AIDS era “transcending” the epidemic, as if that would give the work some weird modicum of value. He urges us to stop talking about parlaying art into research by putting it up for sale at AIDS benefits and donating the money to organizations like amfAR, The American Foundation for AIDS Research.

Stop it, Crimp demands. Stop talking about art as a commodity. Instead, start talking about art as a solution to the epidemic itself.

Here’s the most telling passage:

[A]rt does have the power to save lives, and it is this very power that must be recognized, fostered, and supported in every way possible. But if we are to do this, we will have to abandon the idealist conception of art. We don’t need a cultural renaissance; we need cultural practices actively participating in the struggle against AIDS. We don’t need to transcend the epidemic; we need to end it.

In 2004, I traveled to India on a Fulbright and organized a workshop with artists and activists with the aim of putting Crimp’s central ideas into action. In order to do so, my colleagues at the UCLA Art & Global Health Center and I boiled his ideas down to their essence: MAKE ART/STOP AIDS. Over the past decade, we have organized art exhibitions, participatory photography projects, and arts-based sexual health education programs that fulfill the words on both sides of the slash. At every step along the way, we honor Douglas Crimp and his idea that art possesses the capacity to meaningfully intervene in the AIDS epidemic.

Medicine Man by Daniel Goldstein and John Kapellas

A perfect example is Medicine Man, a mobile sculpture that MAKE ART/STOP AIDS commissioned from San Francisco-based artists Daniel Goldstein and John Kapellas. The piece is constructed of pill bottles that Goldstein and Kapellas, and their partners, saved up from treatment regimens dating as far back as 1985. The artists assembled the bottles in the shape of the Virgin of Guadalupe, with an aureole of syringes arrayed around her body in a halo. You could meditate on Medicine Man for a lifetime, and from it you would learn almost everything you need to know about AIDS, pharmaceutical profits, sexual networks, and our powerful desire to stay alive. When I show people this image, they immediately pick up the spiritual resonances and can see how the artists dissolve the stigma of AIDS in a representation of holiness. But they also see the pain—all those sharp needles—and the privilege, too. That privilege is especially apparent when two lifetime supplies of medication are set side by side with an image by Johannesburg-based photographer David Goldblatt of a South African mother and her two children, who are either too poor to buy medication, or are living with a government too cruel to provide affordable treatment.

Another of our MAKE ART/STOP AIDS projects is ThroughPositiveEyes.org, a website featuring photographs by HIV-positive people living in Mexico City, Rio de Janeiro, Johannesburg, Los Angeles, Washington, D.C., and, most recently, Mumbai. This collaboration with London-based photographer Gideon Mendel is meant to confront the stigma of AIDS by allowing people living with HIV or AIDS to tell their stories, feelingly, in ways that counteract harsh external judgment. One of my favorite photos is Raju’s image of 10 bean sprouts arrayed on a stainless steel plate, each vibrant, growing sprout representing one year of his life infected with HIV—not death, but life.

My students at UCLA understand the power of art to educate, to shift stigma, and to forge powerful channels of communication. They have created a performing troupe, the UCLA Sex Squad, which presents original monologues and scenes to high school students in the Los Angeles Unified School District. Their performances are part of a full-scale public health intervention, designed in collaboration with Timothy Kordic of the district’s HIV/AIDS Prevention Unit. Some 40 percent of high schoolers in Los Angeles will have sex before they graduate; we’re trying to help prepare them for healthy sexual experiences. We’re piloting the program now in Atlanta, Chapel Hill, and Mexico City.

MAKE ART/STOP AIDS demonstrates how art can make things happen in the world, how it can teach and goad and shift and protect us. It’s a reminder, on World AIDS Day, of the most exceptional thing that art can do: save lives.

The UCLA sex squad

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