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.

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.

A bald health counselor holding a clipboard called me into a side room, asking politely how I’d been. He sat me down in a chair opposite his, and broke the news to me so fast that I hadn’t even thought to brace myself: “Patrick, your blood tested positive for HIV.”

I remember experiencing what I imagine rigor-mortis might feel like in my chest, I remember not listening to much of what was being said, and I remember that it wasn’t until after I left the Leeds Centre for Sexual Health and walked back onto campus that I finally cried. I collapsed onto a bench amongst the university’s brutalist architecture, next to a grid-like fountain, whose pattern seems only to be confusion, beneath a large bronze statue of Hermes, God of Transitions, my next appointment card crushed in my fist.

I was one of 725 new patients below the age of 24 to be diagnosed with HIV, the virus that causes AIDS, in the U.K. that year, out of a total of 2.5 million new infections worldwide. These numbers signify progress; this figure stood at 3.2 million in 2001 and decreased to 2.3 million in 2012 (the most recent statistics available).

I am among the first generation of HIV patients who can look forward to a practically normal life expectancy and little fear of developing full-blown AIDS due to access to antiretroviral drug therapy. There has never been more hope for patients with HIV than there is right now.

But that doesn’t change the crushing impact or seriousness of the diagnosis. And it doesn’t mean the danger has gone away. In fact, in July, the World Health Organization recommended that HIV negative men who have sex with men or “MSM” (the term epidemiologists use to cover gay and bisexual men) should take HIV medications similar to mine as preventative treatment because there has been an explosion of new cases among these men worldwide, bucking the trend of progress seen among other groups. Taking these medications preventively might only encourage complacency about the practice of safe sex and cause a rise in cases of other sexually transmitted diseases, bringing more people to waiting rooms like this one.

The Leeds Centre for Sexual Health is a fairly drab and dirty-looking building at one corner of the Leeds General Infirmary. The waiting room for men, which I visit every three months, is long and narrow, with seven uncomfortable benches made from high-backed blocks of gray-laminate chipboard padded with blue wipe-clean vinyl cushions. I’ve watched idle thumbs and nervous fingers pinch and pluck small holes in these cushions into gaping wounds of mustard-colored sponge. There’s no coffee machine, just a water cooler in case you are particularly dehydrated and they need a urine sample out of you.

Pin-boards are filled with posters and pamphlets that try to strike an uneasy editorial balance; they aim at being innocuous enough that you might not be too scared to actually read one of them and menacing enough that they might scare you into changing your undoubtedly terrible sexual habits. One of the more colorful examples aimed at MSM features an orgy of naked action figurines performing a rundown of would-be explicit sex acts accompanied by the relevant safety information under headings like “Water Sports.”

Some people employ the counterintuitive, rowdy approach to dealing with this space. Younger guys in baggy jeans and tracksuits come in with friends, talking about the size of their anatomy and trading expletive-laced barbs about sexual acts to distract themselves from their nervousness. Men in suits will try to keep up the appearance of normality as they loudly proclaim into their Bluetooth headsets things like, “I’m just at the bank.” One guy seemed particularly adept at this subterfuge: “I’m just on my way to the mosque to pray.”

The most common reaction, though, is to avoid socializing. We seat ourselves as far away from one another as possible, and each new entrant tries to split the largest gap he can find down the middle. We avoid eye contact: fixing our gaze at our feet, staring through old magazines or a phone, utilizing hats, hoods, and sunglasses to paint a fiction of looking incognito. The fear is that you’ll recognize somebody from the outside, or worse: They’ll recognize you.

It happens: Once I saw another student with whom I’d had a one-time thing. We hadn’t done anything risky, but I still panicked because I’d chosen not to reveal my status to him. As soon as I spotted him, I dived into the bench closest to the entrance and deliberately held my back toward him. Unfortunately, my doctor called “Patrick” at the far door soon after. I was forced to do a walk of shame right past him as she asked me to confirm my date of birth. Thankfully I hadn’t lied to him about my age; he had been more willing to ask me that question than he had been about anything important such as my HIV status.

I panicked, thinking he’d realize that for me this visit was a regular thing. I worried he’d judge me for not having told him before. If I just had the confidence to own my HIV status 100 percent of the time, perhaps I’d have found a friend like me and broken the strange spell of anonymity and alienation here.

HIV is a hidden disease. Twenty percent of people who have been infected don’t know they have it in the U.K. alone, and they are thought to be responsible for the majority of new infections. For those diagnosed, there is no law requiring HIV disclosure, provided precautions are taken. To disclose often means to be rejected, so many keep their status secret. And because so few of us talk about our diagnoses openly, perceptions of HIV as something that happens to other people have become rife.

Other people simply don’t care enough until it’s too late. I have had two partners, who were fully aware of my status, request unprotected sex anyway. One tried to convince me by saying, “If I get it I get it, that’s my fault and my problem.”

I will be on medication until the day I die, and meals and other activities are planned around when I have to take them. If you include all the medications I take to manage side effects like nausea, diarrhea, and sleep disrupted by lucid nightmares, I’m potentially written up for 36 pills per day. That’s not counting antibiotics I’ve needed to treat various infections that otherwise healthy people might have fought off unaided. I’ve even sought professional counseling for depression.

Though I’m now feeling good and coping well with my condition, I wouldn’t wish my regime of appointments or regimen of drugs and their side effects on my worst enemy. Every time I hear my name called from the far door of the waiting room, I get a twinge of the tight pain I felt in my chest when I got my diagnosis. It serves as a solemn reminder to me to take my condition seriously. I don’t want others to have to join me there on the blue benches, afraid to be honest about who we really are.

The post HIV-Positive and in the Waiting Room appeared first on Zócalo Public Square.