A weary social worker fights an AIDS epidemic in rural Alabama
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DeShazo hadn’t really known what to expect when he was hired to work in the poor counties of southern Alabama to search out people infected with HIV, to convince the at-risk to get tested, and to warn community leaders about the threat of AIDS. In the 18 months since he took the job, he’s driven more than 60,000 miles talking about the virus to just about anyone who will listen. He’s caught hateful stares at general stores and gas stations. A county commissioner over in Wilcox attacked him verbally at a church meeting for talking about AIDS without permission. And he’s heard comments that the "niggers" and "faggots" are just getting what they deserve. None of these things has really surprised deShazo. What’s unsettling is the silence that surrounds him in these towns. When he talks to people it often seems as though he is shouting across an unbridgeable chasm.
THE ALABAMA THAT DESHAZO has been traveling for a year and a half ceased to exist in the minds of most Americans after the Civil Rights movement. Somehow it was never remade into the New South of Ted Turner, Emeril Live, and urban sprawl. There remains an expansive, aching beauty to these counties. The countryside, with its forests of hickory, oak, and pine, its cotton fields and tangles of green creeks and rivers, feels timeless. A procession of churches lines every road: NEW PROVIDENCE BAPTIST, JESUS IS LORD OLD ZION MISSIONARY, LITTLE ZION BAPTIST.
All of this lends the region a sense that it is somehow insulated from the perils of modern life. But now the greatest epidemic of recent times is spreading slowly and quietly through the black communities of rural Alabama. In the years since AIDS hit the headlines, the disease gradually has become a black epidemic. In 2000, according to the Centers for Disease Control, 54 percent of all new AIDS cases were African Americans. The disease is now the number-one killer of both black men and black women between the ages of 22 and 45. What’s perhaps even more surprising is that the South is the new epicenter of AIDS in the United States. More people are living with AIDS in this region than in any other part of the country. And while the disease is still concentrated in Southern cities, there are warning signs that it is creeping into the countryside. The number of rural cases in the South more than doubled in seven years.
DESHAZO AND HIS co-workers represent a thin line of defense against this brewing public health crisis. Impoverished patients already have overburdened Alabama’s small network of AIDS agencies. Mobile AIDS Support Services (MASS), for which deShazo works, has five caseworkers for roughly 800 clients in Mobile and the surrounding six rural counties. Most of their patients don’t have private insurance, Medicaid, or direct access to the new drug cocktails. The caseworkers spend the bulk of their time just trying to get medicine for their clients. MASS needs to hire more staff, but as it is can only afford to pay people like deShazo a salary of $23,000.
As deShazo crosses Choctaw County, a couple of logging trucks stacked with clear-cut pine trees rush by in the opposite direction. The last cotton plantations disappeared in the 1960s, and paper mills are pretty much the only industry now. The county is home to 16,000 people, roughly half of whom are black, with 22 percent of the population living in poverty. And there are no hospitals or infectious-disease doctors in Choctaw County.
DeShazo drives through Gilbertown, which isn’t much more than a stoplight, a cemetery, a grocery, a pharmacy, and a dollar store, and makes a right turn down a narrow, unmarked dirt road. He saw the Jackson sisters once before, as a favor to the social worker in Selma who is supposed to be in charge of their case. A part of him is pissed off that they’ve dropped off the agency’s radar since then. At the same time, he’s not surprised, given the patchwork nature of AIDS care in Alabama. As worried as he is about these girls, he seems charged up about the case, confident that he has the skills to work through the welfare system so that the sisters can get the medications, doctors, and care that might save their lives. It’s a sense of purpose that he has rarely felt in other social work jobs, which mostly left him feeling weak and hopeless.
DeShazo pulls over in front of a trailer home, steps out, climbs three rickety steps, and knocks. A female voice yells to come on in.
DeShazo opens the door and feels a wave of heat. The first person he sees is Sara, who is sitting on a couch changing a 2-year-old boy on her lap. She’s wearing a Michael Jordan T-shirt and her hair is in long cornrows. He is relieved to see that she has full cheeks and looks healthy. Another child in blue pajamas is giggling and waddling back and forth on the floor. Piles of clothes, empty soda cans, and an overturned tricycle litter the living room. A raspy cough comes from the kitchen, where Sara’s sister, Rebecca, is slumped over a chair facing an open oven, trying to keep warm. She must have fever chills because the trailer is stifling, almost too hot to breathe in. DeShazo sets his bag of clothes and toys down on the floor. "Hi, I’m David deShazo from Mobile AIDS Support Services," he says. "How y’all doing?"
Rebecca doesn’t move. Sara looks up from the couch and says hi. He had been worried about how they would receive him. White men who work for the government aren’t always greeted warmly around here. But there is a loose confidence to Sara’s smile, and the casual way she continues changing her son’s diaper puts him at ease.
DeShazo says that he’s brought some supplies and then sits down and asks Sara if she’s got any income.
"Nothing but food stamps," she says, seemingly unfazed.
"How about Rebecca?"
"She got a disability check."
"How long has Rebecca been like that?" deShazo asks, nodding toward the kitchen.
"She’s been real sick for three days now," Sara answers. "Something’s messing with her eyes."
DeShazo feels a twinge of fear. He thinks that she probably has contracted CMV, normally a relatively benign virus, but one that can blind AIDS patients.
"You getting any medicine, Sara?" deShazo asks.
"I get medicine while I’m pregnant, but I save it," she says. "I ain’t going to get no more when I have the baby."
DeShazo’s head starts to spin. "You pregnant again, Sara?" he asks. He was so relieved to see her carrying weight.
Sara smiles, shakes her head as if she can’t believe he couldn’t tell, and says, "Seven months."
DeShazo’s questions begin to tumble out faster and with more urgency. "Y’all still seeing those doctors in Waynesboro?" he asks.
"Yeah, but I missed my last two appointments because I didn’t have no way to get there," she says.
Rebecca still hasn’t uttered a word. She coughs again—a coarse hack. Sara tells deShazo that she was turned down for Medicaid before she got pregnant. He figured as much. In Alabama you have to be over 65 years old or prove you are blind or disabled. In his experience, most people aren’t able to get the help they need unless a lawyer or a professional advocate is working their case. Rebecca stumbles into the room and collapses on a couch next to the door. She has white flecks of spittle on her mouth and chin.
Sara’s pregnancy has deShazo worried that she might have infected others. He asks Sara if her boyfriend has been tested. He tested negative a year ago, she says, but he hasn’t been retested since she got pregnant again. (He’s now in prison.) And, as far as she knows, Rebecca’s boyfriend hasn’t been tested at all. "My boyfriend takes some of my medicine," Sara says, "just to be careful." DeShazo feels a flush of anger. He can’t believe these sisters are having unprotected sex and that they think feeding them AZT is going to keep their boyfriends safe. They could be starting a small epidemic.
As for the toddlers, Benny and William, Sara tells deShazo that they were tested a few months ago. This is good news, but it doesn’t mean they are all right. Small children need to be tested repeatedly before it can be absolutely determined that they didn’t contract the disease from their mothers.
A heavy woman wearing a tan jumpsuit and a gold crucifix around her neck pulls back the screen door. Sara introduces her as her aunt Jesse, who has come to help them with their laundry. As the aunt makes her way to the back of the trailer, Sara whispers, "I don’t want her to know ’cause she talks too much." (Sara and the rest of her family have agreed to share their story on the condition that their names be changed.)
Rebecca has another coughing fit. As deShazo talks with Sara, Rebecca’s son, William, laughs and teethes on a closed bottle of pills. He’s fat, playful, and, at a year and a half, completely unaware that his mother is gravely ill.
DESHAZO WAS HIRED along with seven community outreach workers to canvas 32 of Alabama’s poorest rural counties, which based on their sexually transmitted disease and teen pregnancy rates appear most vulnerable for AIDS. A year and a half into the three-year project, deShazo estimates that he’s approached 300 people for testing. Only two have agreed to get into his aging blue Pontiac and head down to the local health department. This isn’t unusual. There is a long-standing shortage of doctors and health facilities in black Southern communities. And many blacks in the region distrust doctors—a legacy of the infamous Tuskegee Syphilis Study, in which black test subjects were denied treatment for decades as part of a long-term health experiment. What is mentioned less often is that, compared with gay communities, much of black America—and particularly the rural South—has been relatively ignored in the campaign to educate people about AIDS.
DeShazo was hired in part because he had an idea about how to navigate the socially conservative, religious, and racially fractured landscape of rural Alabama. He was raised in Clark County, 50 miles north of Mobile, where his father was a country doctor. His understanding of the culture, the spiritual convictions of the people, and even the subtle rhythms of their speech have allowed him to penetrate his territory more deeply than any of his fellow workers. But growing up in the segregated world of 1950s Alabama did not prepare him for the rural black world this job has allowed him to enter.
Certainly he was familiar with the unsettling questions of race and poverty. His father had separate "colored" and "white" waiting rooms. And he has a hazy memory of his mother leaning back in the family station wagon when the news came across the radio that President Johnson had signed the Civil Rights Act and wondering aloud why Northerners always had to shove ideas down Southerners’ throats. But that was just the way things were then. Mostly, he remembers the gentle black woman who helped raise the deShazo boys and how much he loved her, and he remembers rides out into the country with his dad to care for poor blacks and how sometimes they would get paid and other times they would drive home with a sack of potatoes or turnip greens on the backseat.
Now those memories seem dreamlike or unreal. At 50, he likens this AIDS work to having blinders torn from his eyes. He’s found clearings in the woods filled with rows of rusting trailers where people can’t afford electricity, water, or indoor plumbing—places that would be described as shantytowns if they were in Africa or Brazil.
ALABAMA, WHICH HAS always had a relatively low rate of AIDS, now seems primed for a burgeoning epidemic. Crack—which often breeds a sex-for-drugs trade and seems inevitably to show up just ahead of AIDS—has moved in from Florida and Texas and made its way into even the most rural counties. Already black women in the South are 26 times more likely than white women to have HIV. DeShazo is armed with these facts, but they seem somehow abstract in places like Gilbertown. The threat of AIDS here feels deeply entwined with poverty and the lingering effects of segregation.
When deShazo enrolled at the University of Alabama in 1968, the social upheaval that was cutting across the South in the wake of the civil rights movement and Vietnam left a deep impression on him. He became something of a hippie and got into social work with an idealistic notion that he could change the world. He began working in child welfare and spent years taking kids away from ugly family situations and putting them in foster homes that were not much better. He started drinking to numb an encroaching feeling of failure. When he found himself crying at his desk at the end of the day, he quit and got a job at a mental hospital. That work was just as hard. His drinking habit began to develop a life of its own, and his marriage gave out in 1991. He used to get furious at "the system," but it is hard to direct your anger at a faceless bureaucracy.
Increasingly, he internalized his frustrations and lost himself in self-pity and anger. His second marriage fell apart, and his doctor warned him that if he didn’t stop drinking, he would die. He sobered up, but he was out of work for a year and a half. On the most basic level, AIDS work has given deShazo a second chance at his career. But it has clearly come to mean more than that. This job has offered him a redemptive opportunity to be the champion of the disenfranchised that he always imagined he would become. But it is also a dangerous position that toys with his sanity.
EVERY SPRING, SARA and Rebecca Jackson’s high school holds a blood drive. It’s always been a popular event with the students. Giving a pint of blood helps the sick, and it’s an easy excuse to get out of afternoon classes. At least that’s how 16-year-old Sara and her 14-year-old sister, Rebecca, felt one afternoon when they volunteered to have their blood drawn.
Sara was the more rebellious of the two sisters. Always using her quick wit to get her way with her mother, she had declared her independence by marrying her boyfriend and moving out of the house. As soon as she graduated she planned to join the army so she could earn enough money to pay for college and become a lawyer. Rebecca, the baby of the family, was more sensitive and even as a youngster wanted to become a nurse. Their father—who had been in and out of prison for drug offenses when the girls were young—worked as a logger and was making enough money to allow their mom to stay home with Rebecca. On a warm Wednesday afternoon about two months after the blood drive, Sara came home for a visit and greeted her mother, who absently handed her a plain white envelope from the county health department. Simple and straightforward, the letter thanked her for her donation but said that her blood was contaminated with HIV. Sara was stunned. She didn’t know anything about the disease except that it was deadly.
Three days later an identical letter arrived for Rebecca.
Sara and Rebecca dropped out of high school. Sara’s marriage didn’t last, and the girls’ father was soon back in prison for drugs. Their mother has tried to care for the girls and her grandsons as best she can but has avoided asking welfare workers or AIDS agencies for help.
DESHAZO IS TALKING to Rebecca and Sara’s aunt in the kitchen. He has been at the trailer for about an hour now. He is worried that he is not going to be able to keep these girls alive without help. He wants to enlist family and neighbors who can drive Rebecca two hours to Mobile to see a specialist. That is going to be tough as long as the sisters keep their illness secret. When he comes back into the living room, he says to Sara, "I know the doctors in Waynesboro have been good to you, but it may be time for you guys to see a specialist. How do you feel about that?"
"I’ll do anything that’ll keep me healthy like I am ’cause I don’t want to leave my children like this," Sara says. But when he asks if she would consider telling her grandparents or the host of cousins and in-laws who live in the area that she’s infected with HIV, she is silent. All the MASS caseworkers have heard stories about clients getting discriminated against at their jobs, frozen out by their churches, and abandoned by their families. Occasionally, the social worker who handles the agency’s rural cases must deliver medications to clients at "secret" locations like a grocery store parking lot.
DeShazo tries to convince Sara to find the family members who will help her, but it is clear that he’s not getting anywhere. Needing a break, he offers to go down to the pharmacy in Gilbertown and pick up Rebecca’s medication. Once he’s in the car, de-Shazo looks shaken. He lights a cigarette. Like a correspondent who has spent too much time reporting from a war, he seems exhausted and frayed around the edges. At the Gilbertown pharmacy, a small one-room store, deShazo buys a pillbox, hoping to make it easier for the girls to stick to their prescription regimen. Behind the counter, a white woman with feathered brown hair tells him that she’s heard that Rebecca is in bad shape. She mentions that they have a couple other women and a man who order HIV medication as well.
AIDS CAN MOVE relatively quickly through a rural county. HIV spreads mainly through what epidemiologists call "sexual networks," social groups in which people are sleeping together. On paper they can be traced like genealogical trees. When HIV is introduced into a small town where a significant number of people belong to a single tree, there is a real risk of an epidemic. (When two girls in a rural Mississippi town were diagnosed with AIDS several years ago, the state health department found a heterosexual network of 44 people, of whom 34 were tested and seven were found to be HIV positive. When the Centers for Disease Control followed up several months later, only two of the seven were receiving medical care.)
When deShazo gets back to the trailer, Sara has put the place together: The tricycle has been righted, and the clothes that were on the floor have been put away. Rebecca is sitting up, talking on the phone. She flashes a smile and for an instant looks like any other teenager. DeShazo sits down in front of her. She puts down the phone and is holding William tightly in her arms on the couch.
"Do you ever feel like there’s no reason to live, Rebecca?" deShazo asks.
William’s head is buried in her breast, and she is rocking him back and forth. "Sometimes," she says and stares at the ground.
"Is there anybody you can go to when you feel like that?" he asks.
"There ain’t nobody but myself," she says and clenches her jaw. Her eyes fill with tears, but she stops herself just short of crying.
It is late afternoon, and deShazo prepares to leave. He has scheduled an appointment with the sisters for next week and has asked them to arrange for their mother to be there. On the drive back to Mobile he has Jimi Hendrix playing on the tape deck, and he’s muttering about the chaos of the situation. Why hasn’t Rebecca been given her medication for her depression? And how is he going to deal with a girl who is on the verge of death, a couple of boyfriends who might be infected, an illness that is a secret, and another infected girl who is pregnant and about to lose her Medicaid?
If Sara is denied benefits, deShazo says, he will apply for free medications from one of the pharmaceutical companies. He also wants to get the sisters on a program that will help pay for electricity and heat without exposing that they have HIV. He carries a generic business card that says he works for the United Way. Maybe he can use it to cut a deal with the local utility company. He would like to find a nurse in the area with some HIV experience who will check up on Rebecca, but that will involve getting Rebecca approved for Alabama’s home health program, which requires a medical history from her doctor and the cooperation of the Choctaw County health department. She might be dead by then.
There is a horror to this situation that makes it seem out of place in the United States. "The thing that’s most frightening to me," says Sandra Thurman, who ran the White House Office of National AIDS Policy during the Clinton administration, "is that we are putting the epidemic on the back of a health care and social welfare system that is already failing to serve those most in need."
The job of getting AIDS patients like Rebecca and Sara Jackson the drug cocktails that have been popularly heralded as a panacea will ultimately fall on the shoulders of community-based organizations like MASS. In 2000, MASS, which operates on an annual budget of $600,000, had to "professionally beg" pharmaceutical companies for $1.8 million in medications for uninsured clients. The Alabama legislature has been unwilling to fully match federal funds to help the poor pay for expensive drugs, which can cost anywhere from $10,000 to $18,000 a year. And during any given month, about 400 infected Alabamians—mostly black, all living below the poverty line—can be on a waiting list to get on the federal government’s drug assistance program.
THE NEXT TUESDAY morning de-Shazo drives out to see Rebecca and Sara. He has been thinking about them all weekend. "I wasn’t going to cry, and then I had all this stuff dammed up inside and the tears just came," he says. "Then the anger started. I’ve got to channel that anger. This girl ain’t going to die. She ain’t going to die. These girls are going to have a chance."
When he arrives at the Jacksons’ trailer, there is no sign of anyone. A late-’70s Chevrolet drives up the road. Sara is in the backseat with her son, Benny. "Where’s Rebecca?" he asks. Sara says Rebecca collapsed on Saturday. Just stopped breathing. She’s in the hospital in Waynesboro.
DeShazo shakes his head, smiles grimly, gets in his Pontiac, and pulls off in the direction of Waynesboro, talking as he drives. Rebecca’s being in the hospital might be a good thing. A hospital stay will make it easier to get home health care. He’s rationalizing.
Waynesboro is a city of around 6,000. DeShazo passes a cluster of single-story brown cinder-block buildings—a housing project that seems out of place in a small town. After a couple of wrong turns, he finds the hospital. In the elevator heading up to Rebecca’s room, deShazo looks tired and stares nervously up at the blinking floor numbers.
He finds Rebecca’s door. Inside, she is in the fetal position facing a single window. She’s alone. A movie is playing on a television bolted to the wall. Rebecca has her arms pulled up close to her face. An IV is hooked up to her right arm, and she’s clinging to her blanket like a small child. DeShazo walks around to the side of her bed. He leans up against the radiator next to the window. "How you feeling, Rebecca?" he asks. "I’m going to have surgery tomorrow," she says, her voice raspy.
"What for?" deShazo asks.
"My gallbladder," she says before being seized by a fit of heavy coughing.
"How old are you, Rebecca?" deShazo asks.
"Nineteen," she answers.
"You know, Rebecca," deShazo says, "there’s a lady in Mobile who does nothing but check on children whose parents are infected."
"He ain’t infected," Rebecca says. This is the strongest statement she has ever made to him.
"I know," he says, "but it may be wise for William to see her anyway."
"My mama’s with him," Rebecca says softly.
"Yeah, I know your mama’s there doing a real good job." Realizing that there’s nothing he can do or say at this moment to make the situation better, he decides to leave.
IN THE COMING deShazo will dedicate almost all of his time to this case. Rebecca’s doctor will drop her for failing to take her medications. It will turn out that the doctor never even prescribed protease inhibitors, the most powerful lifesaving drugs, because he didn’t believe she would take them. DeShazo will drive Rebecca to a specialist two hours away in Mobile, who will diagnose her with pneumonia, CMV, and thrush. When he tries to get home health care for her, an anonymous caller will warn the Choctaw County health department not to send a nurse to the Jacksons’ because Rebecca plans to bite and infect as many people as she can before she dies. Sara will go into labor a month prematurely. The hospital in Waynesboro, saying they don’t have the facilities to handle a premature birth, will refuse to admit her and opt instead to drive her to Mobile. Forty-eight hours after she gives birth, the hospital in Mobile, citing policy for mothers on public assistance, will attempt to discharge her with a bus ticket back to Gilbertown. DeShazo will get her another day in the hospital. But when Sara gets back to her trailer, the electricity will be shut off.
All of this is still in front of them, though. On the drive back from the hospital in Waynesboro, the harsh reality hits deShazo: Keeping Rebecca alive with what few resources are available is unlikely. He passes a hand-painted sign for Pine Grove Cemetery on the corner of a dirt road leading into the forest. He is smoking another cigarette. Along the highway the sweet gum trees have turned flaming orange and the oaks a sunflower yellow. "She’s going to die," he says. "She’s going to die, and there ain’t one goddamn f-ing thing I can do about it."
EPILOGUE: DeShazo angles the blue Pontiac in front of Rebecca Jackson’s trailer and kills the engine. It’s spring, 2002. Their wooden porch has collapsed. He’s stopped by to see Rebecca. For the past year, his work and much of his life has been centered around keeping her alive. Gradually, he’s seen Rebecca’s own desire to survive grow. Last spring, her boyfriend, John, proposed. And as soon as Rebecca is strong enough, they plan to have a wedding. Officially, deShazo was supposed to hand off the case to another social worker months ago. But he can’t. Rebecca needs him (especially since Sara had pneumonia over the summer). In a sense he’s kin to the Jackson’s now. DeShazo hears the sound of wheels on the gravel road. He turns. It’s John and he has Rebecca in the car. She’s thinner than deShazo has ever seen her. John helps her out of her seat. She’s too weak to walk so John lifts her into his arms and carries her into the trailer. A few days later, she’ll be back in the hospital.
Jacob Levenson is a freelance journalist and a fellow with the Open Society Institute. His book on the AIDS epidemic in black America will be published by Pantheon Books in 2003. From the Southern literary and cultural magazine Oxford American (Fall 2001). Subscriptions: $19.95/yr. (6 issues) from Box 1156, Oxford, MS 38655.