October 24, 2013

It’s a taboo: Nowhere else in the United States are more people dying of AIDS than in the South. Most of those infected are African Americans.

By Katja Ridderbusch

Marilyn Swyers is used to her pleas falling on deaf ears when trying to fundraise for her organization, which many people find hard to warm up to. “We don’t have pets and children,” she says, pursing her lips and pushing her designer sunglasses back into her thick red hair.

For 16 years, Swyers has been in charge of a small AIDS organization called Unity Wellness Center near Auburn, Ala., a small town known mostly for its college football team. Here, in America’s deep and rural South, HIV and AIDS, often considered the diseases of the cities, lead a hidden life of their own. Half of all the new HIV diagnoses in the U.S. each year are made in the South, according to the Centers of Disease Control and Prevention (CDC). More people are dying of AIDS in the South than anywhere else in America, the rural South in particular.

“Poverty, poor infrastructure and a culture of shame, stigma and secrecy – this is the perfect storm,” says Swyers.

The Unity Wellness Center aims to help people with HIV and AIDS from the East Alabama region get basic medical treatment, but also counseling and housing. Most patients who come here are uninsured or under-insured people.

The organization, which also has a small clinic, is located in a nondescript office building near interstate I-85. It’s a slow morning, the clinic’s long, windowless hallways seem deserted, and the harsh neon light reflects on the beige linoleum floors. Plastic dispensers with hand sanitizer are hanging from the wall next to every door. There’s a sharp smell of industrial cleaner in the air.

The Unity Wellness Center has 14 employees, among them a nurse practitioner, a lab technician, a housing coordinator, a substance abuse counselor and several social workers. An infectious disease doctor from the nearby hospital and a primary care physician come to the clinic once a week or whenever needed. The organization currently takes care of about 200 patients, says Swyers. Some come by once a month, others every day.

In walks Omar Vinson, the first patient of the day. He makes a dramatic entrance, covered in a cloud of perfume and dressed in a shirt so red that it reflects off his skin. The 31-year-old is in good spirits, as he will probably be able to go back to work soon. 

“I’m excited about that. Very. I really like my work,” he says with a deep sigh.

Vinson is a mortician, has been for nine years now. His job is to discuss funeral arrangements with the families of the diseased and embalm the bodies. He sometimes restores faces that have been destroyed in an accident or distorted by an illness.

When he was diagnosed with HIV in 2010, his job “all of a sudden got very, very personal.” Especially since he just had been working on two bodies of people who had died of AIDS, both fairly young. “I couldn’t help but ask myself, how do I prepare myself for this, for the final, the ultimate,” he says.

He decided to do everything he could to keep living. He started a treatment regimen with antiviral drugs. “If someday things won’t go as planned, at least I don’t have to blame myself for not having tried,” he says.

There are always setbacks. Last year, Vinson was diagnosed with Crohn’s Disease, a chronic inflammatory bowel condition. He lost weight, going from 170 pounds down to 80 pounds. Lately, he has started to feel better. “And I have also started to look better,” he says and laughs.

Vinson is gay, and he's out. It took him a year, though before he could tell his family and friends he was HIV positive. He remembers when he was driving in the car with his mother, and all of a sudden, he just had to talk, the secret hidden so deep inside him forced its way to the surface.

“My first thought was, oh Lord, my mom is going to run her car into the telephone pole. But she was very calm.” She asked if he was OK. “And I said, ‘yes mom, I’m OK.’ And then she replied: ‘if you are OK, then I am OK’,” he says.

Vinson is typical and not-typical at the same time. Typical, because African Americans are affected more than other ethnic groups by HIV and AIDS. While they only make up 14 percent of the American population, they represent 44 percent of all 1.1 million HIV patients in the country, according to the CDC. Yet Vinson is untypical, because homosexuality and HIV are still considered a taboo in most of the rural South, and particularly, among African Americans.

“You never hear about it, you never talk about it,” he says.

Trevon Lowe is the second patient of the day. He doesn’t want to share his real name. He’s 34, black and gay. He has known of his HIV infection for 10 years now. Unlike Vinson, Lowe doesn’t tell many people that he’s homosexual, and even less that he's infected. “Only a few friends” know of his HIV diagnosis, but not his mother or siblings.

He’s close to his family, he says “We can talk about everything, faith and politics and money, but not about this part of my life.”

He shrugs, fumbles with his glasses. “I’m scared they wouldn’t understand. I’m scared I’d be ostracized. I'm scared I wouldn’t be part of my family anymore.” He says he's glad he never told them and hopes “that things stay the way they are.”

Marilyn Swyers hears stories like Lowe’s every day, not only from patients but also from some of her employees who are from the area. “Some of their families, friends and neighbors are shocked when they hear that they work for an AIDS organization,” she says.

She has learned over the past 16 years to mistrust every cliché or preconception. While 67 percent of her patients are black and 63 percent live at or below the poverty line, she has long ceased to be surprised about who walks through her doors.

“HIV does not discriminate,” she says. “It crosses every socio-economic line there is, whether you are rich or poor, whether you are educated or not.” It knocks on every door, the shacks and the palaces. 

“If you are having sex, you are at risk,” she says. “Period.”

Swyers is tall, with fair skin, an engaging smile and plenty of freckles. She wears a long cotton skirt in pastel colors and large, statement pieces of silver jewelry. The 56-year old Long Island, NY native is a stranger in the deep South. As a child and teenager, she went to a Catholic school, studied fashion design in New York City, and lived with her husband and their two daughters in Alaska, Virginia, Ohio and now, Alabama.

Right after her oldest daughter was born, mother and child needed a blood transfusion. That was in 1983, and HIV had just appeared on the public radar. Then at the age of two, the daughter fell sick with a stubborn infection, and the primary care physician ordered HIV tests for both child and mother. The doctor’s suspicion made its way to the nurse, from the nurse to the waiting room, from the waiting room to the neighborhood, and from the neighborhood to the town. Swyers and her daughter tested negative.

“But after that experience, I knew what stigma is,” she says.

Stigma, shame and secrecy make a poisonous concoction that fertilizes the cultural soil of the American South, often called the Bible Belt, where the people are more religious, and the sermons are shriller than elsewhere in the country. Here, billboards in front of many churches, black and white, don’t leave a doubt who is welcome and who is not.

“God is good, gays are evil,” one near Auburn reads. “Jesus hates fags” and “AIDS is the wrath of God”, read others in rural South Georgia.

Women make up the majority in African American church communities. “There is a distinct scarcity of eligible young African American men,” says Gina Wingood, a professor at the Department of Behavioral Science at Emory University in Atlanta. “One reason is that the incarceration rates of African American males are higher.”

Indeed, almost 40 percent of all inmates in American prisons are black. And therefore, many women cheer at the rants from the pulpits against gays – so that the pool of eligible men for sexual relationships doesn’t dry up even more.

Wingood, who is African American herself, has studied the issues of women, HIV and religion for many years. “Churches in the South have tremendous power in the communities,” she says.

And because some men fear the wrath of God, and of the women, they may feel pushed to lead double lives - publicly with their wives or girlfriends and secretly with one, or several, men. Hence, the professor further explains, they spread the virus, often not even knowing they are infected themselves. It therefore doesn’t come as a surprise that against the national trend, the number of HIV infected women is on the rise.

Etta Johnson (name changed), for example, got infected by the father of her youngest daughter. That was 20 years ago. Today she works for the state of Alabama, supporting AIDS organizations like the Unity Wellness Center by sharing her own story with the patients. Johnson is 45, tall and heavyset, with closely cut curls and neon-colored fingernails. She has gotten used to living with HIV, she says. “Sometimes, I have to pinch myself to realize that I’m HIV positive.”

In medical terms, Johnson is a long-term survivor, and for a long-term survivor, other ailments become relative. She has high blood pressure and high cholesterol, renal insufficiency, gallstones and fat deposits in her body as a result of the medication. 

“I think I had everything but cancer,” she says dryly, “but look, I am alive.”

Sometimes, patients she speaks with don’t believe she’s HIV positive. She shakes her fingers. “They say, you don’t look like HIV, and I tell them, HIV don’t have no look.”

Johnson tries to encourage patients to stay on their medication and not let doctor’s appointments slip. The latter is one of the major problems for HIV organizations in the Southern United States: People who seek treatment late, often too late, who stop or interrupt treatment.

There are so many reasons, says Marilyn Swyers, “where do you start?”

Poverty is one. It is more prevalent in the South than elsewhere in the United States. Homelessness is widespread as well, even though it has a more hidden face than in the North. About 25 miles outside of Auburn, the Unity Wellness Center, with the help of architecture students from the nearby college, has built a number of houses for patients to live.

“At least we can help some of them,” says Swyers.

But the organization is small, and its funds are limited. The majority of the annual budget of $750,000 comes from federal sources, the rest from donations.
In addition to the housing situation, medical infrastructure in the South is flawed. There are fewer HIV clinics here than there are in the North and the West, or in major metropolitan areas. Certain regions are simply dead zones of care.

“Some patients have to drive for two hours to get to us,” says Swyers. Public transportation is insufficient, and many patients don’t have money for a car or even, for gas.

Also, in several school districts in the South it is forbidden for sexual education teachers to use the words “intercourse” or “condom.” Abstinence only, that’s the general motto. A motto that Swyers finds unrealistic and downright dangerous. “Seventy five percent of all high school seniors are sexually active. We can’t ignore that.”

Add to that the deep-seated distrust of mainstream medicine among many African Americans, she says, which keeps them from seeing a doctor until they are already very sick.

The infamous Tuskegee trials are burned in the region’s collective memory. Between 1932 and 1972, representatives of the U.S. Public Health Service infected African American sharecroppers with syphilis, in order to study the natural progression of disease if left untreated. The town of Tuskegee is only about 20 miles southwest of Auburn.

Omar Vinson decided to leave behind the trauma of his fathers and the stigma of his disease. He’s HIV positive, he says, but he’s free. “I see many people so ashamed, so stigmatized, so scared, like in a cage. I can’t live like that. I don’t want to live like that.”

Then he laughs and waves good-bye. “I’ll see you the week after next,” he says to the nurse in the hallway. By then, he will hopefully be working again as a mortician.

Marilyn Swyers smiles. People like Vinson, Trevon Lowe and Etta Johnson motivate her, people who do everything to just keep going. Their efforts make her keep going as well, she says. Even when another grant application has been denied. Even when she runs into administrative, financial, cultural or any other type of resistance. And even though she doesn’t have kids and pets to offer.

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“A broken social infrastructure”

The disproportionally high number of new HIV infections in the rural American South has become a pressing topic for researchers, politicians and activists in the United States. This year’s United States Conference on AIDS, which took place in September in New Orleans and is one of the largest gatherings on HIV and AIDS in the world, had decided to focus on the situation in the South.

“HIV is not just an epidemic. It’s the indicator of a broken social infrastructure,” says Lisa Biagiotti, a freelance journalist and filmmaker in New York City. “HIV is sort of a GPS to the most fragile parts of the country.”

Two and a half years, Biagiotti traveled throughout America’s rural south - Mississippi, Louisiana, Alabama, Georgia, Tennessee, North and South Carolina, 13,000 miles in total. She spoke with more than 400 people and finally put the story together in a documentary film: “deepsouth” shadows HIV infected patients and social workers, a homophobic pastor and a discouraged sex-ed-teacher.

The narrative of HIV has been more or less the same over the years, says Biagiotti. It's the narrative of white gay men in the cities. “This is an important story. But it’s not the only one.”

“deepsouth” has screened at several independent film festivals in the United States and in Europe, and has won a number of awards. ridThis is a translation of an article originally published in the German weekly Die Zeit on October 24, 2013

 

© Die Zeit / Christ und Welt - Katja Ridderbusch