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The Limits of Compassion

In August of 2000, I found myself in a remote rural village in Lesotho. I was working as an AIDS journalist and had traveled to Durban for a conference on the continent’s pandemic. There, a stout Basotho woman invited me to come and see what was happening in her country.

It was my first trip to Africa. My first greeting by ululating women. My first experience as an improbably highly-honored guest. My first review of villagers’ crafts: the mountain of income-generating objects made from woven straw that has emerged from African poverty. My first speech, delivered sentence by sentence, alongside a translator. My first village dance, chest to chest with women whose shoulders and hips twitched in small movements that conveyed tremendous force. My first departure in daylight beneath a nearly-full moon.

They had nothing, the villagers told us. No pens, no notebooks. They had no vehicles and no ambulance. When someone was sick, the villagers carried that person on a piece of corrugated metal over the rocks and to the road, some kilometers away, and then hoped to flag down a vehicle for the remainder of the long trip to the hospital. The villagers pointed to a new-looking building with a corrugated roof. Donors had come and built a school. But they had no textbooks, no teacher, just the empty hull.

There was a young boy in the crowd that day who caught my attention. He was bright-eyed and looked at me directly. I wiggled my eyebrows and pulled faces. He grinned. I grinned. My first rapport with an African child.  I had three or four ballpoint pens in my pocket and at least one reporter’s notebook. I also had, for whatever reason, a foot severed from a toy wooden giraffe of the sort that is sold by the side of the road in most countries in East and Southern Africa. The marks of the whittling knife were visible on the side; the irregular oblongs of a giraffe’s coloring had been burned into the wood.

As the day drew to a close, I knew I wanted to give the boy something. This desire came from my groin and wrapped around the tops of my thighs. I rubbed my finger up and down the ballpoint pen. If I gave him the pen, would he have to share it, would he be bullied, would he need paper? Should I give him paper, too? Maybe I should take off all my clothes. My sunglasses. My water bottle. What about all the other children? Maybe I should send a crate of pens and pads back from Maseru so that the school building would not be so useless. Perhaps I could afford a Basotho teacher’s salary? I felt a desire to say something meaningful in a language I had learned just enough of to know that I didn’t speak it at all.

When it was time to go, we stood and the villagers cheered and we cheered back. The boy and I grinned at each other again. My fingers traced the contents of my pockets. I worked my inventory like a telegraph operator. I could not take anything out because then everyone would see what I had.

My hand closed around an object: the giraffe foot. I whisked it out and handed it to the little boy. He smiled and I smiled and I turned away before I could watch him look at it in what would have to be perplexity. It was a broken toy, not even a toy, just a piece of wood the size of a thick thumb. It had no conceivable use except to remind him of the day on which we had met, which was perhaps what I wanted. My first fantasy that I could meet a child in extreme poverty and have no obligation to him, just a shared experience; that we could just be friends. I had given him a keepsake of our afternoon together. As though I knew how his memories worked. As though I would ever see him again. He’d be nearly twenty now, if he’s still alive.

 

Two wars were born during President George W. Bush’s State of the Union address in January 2003. One was the war on terror, the invasion of Iraq. Even though we had not yet learned the phrase “collateral damage” for civilian casualties, or come to understand how a twenty-two-year-old from Kentucky might open fire on a family in a car because the father failed to brake, we knew that this war would create the kind of orphans that our country would try its hardest not to count.

The war on HIV was second-born and more of a surprise. President Bush looked moistly at the cameras and delivered the President’s Emergency Plan for AIDS Relief: PEPFAR. There has never been and perhaps will never be such an initiative as this again: a virus-specific plan of global scale that marshaled all of the U.S. government agencies working overseas: the Peace Corps, the Department of Defense, the CDC, USAID. In the official transcript of the State of the Union from that night, PEPFAR can be found in the section titled “Compassion.”

PEPFAR had three primary main aims: to prevent seven million new HIV infections, to treat at least two million people with antiretroviral therapy, and to provide care to children orphaned by AIDS. There were fourteen African “target” countries chosen to launch the program. All of the U.S. agencies working in each country were charged with creating and implementing a plan to help meet the prevention, treatment, and orphan-care goals.

The targets made a pleasing trinity, particularly for the fundamentalist Christian voting block to which Bush appealed. In the treatment goal, there was the opportunity to extend mercy to suffering Africans with antiretrovirals that had previously been out of reach. With the prevention target, Bush mandated that every country devote a portion of its funds to abstinence-only education. There wasn’t any scientific evidence to support this as an HIV prevention tool, but its emphasis on morality played well with the Christian right. The final goal—taking care of the children affected by the epidemic—appealed strongly to the congregations that were, in 2004, filling Entebbe-bound flights with missionary groups wearing matching, Scripture-quoting t-shirts.

The American Heritage Dictionary defines compassion as “the deep feeling of sharing the suffering of another in the inclination to give aid or support, or to show mercy.” It is from the late Latin compati, a cognate that means “to suffer with.” PEPFAR was only possible in a country wracked with fear. In the years immediately following 9/11, Bush made more changes to American foreign aid than any president since Kennedy. We cared about the world then, for a moment; we were suffering and we were afraid.

I had been in Uganda on September 11, 2001, and it took several hours for my mother to reach me to tell me that my father, who worked in the north tower of the World Trade Center, had survived. When I returned to the U.S., and went back to my office on the 27th floor of a building just off Wall Street, I could see the Hudson River through an airy gap where the towers had once been. The water was blue and black and I looked at it one thousand times a day.

When PEPFAR was launched, it seemed to me that perhaps the fabric of the world had been rent asunder once again—only this time there was a possibility of healing, though I could not say for certain whether it was for the people in Africa or for America. I packed my bags and moved to Uganda to find out.

I was really only interested in the ways that PEPFAR would achieve the treatment goal—two million people on free AIDS drugs . This would require programs the likes of which had never before existed in Africa. Treating a chronic illness in a region where ailments like diarrhea and malaria routinely kill people, mainly children, was both necessary and utopian.

Soon after I reached Kampala, I met a doctor who’d taken a sabbatical from Baltimore to come and work at an AIDS treatment clinic at the main hospital. “I didn’t get to see the Berlin Wall come down,” he told me. “So I came for this.”

 

After a few months in Uganda, I decided if the AIDS drug programs were something to see, the OVC programs funded under Bush’s initiative were something to avoid. I knew, vaguely, that 10 percent of all PEPFAR funds were to be spent on orphans and vulnerable children, or OVCs, but this area of programming struck me as soft around the edges, pandering to missionaries. These programs weren’t linked to treatment—including pediatric treatment, which was handled by the clinics and U.S. agencies focused on antiretrovirals.

While there may have been rhetorical unity to the PEPFAR targets, the reality was that prevention, treatment, and orphan care were vastly different in terms of logistics, measurable impacts, and clarity about strategy. Treatment programs were fairly concrete: they needed doctors, nurses, antiretrovirals. There was some debate about what to do with prevention. The abstinence-only earmark would receive more attention than any other aspect of PEPFAR in its early years, but there were also other measurable actions taken with the aim of prevention: condoms distributed, billboards constructed, counseling programs launched, and so on. The orphans program was the murkiest in terms of what should be done and how success should be measured. There weren’t proven strategies for helping AIDS orphans that could be packaged and rolled out like AIDS drug clinics or condom distribution programs. Instead, there were countless services—from choirs to school fees to vocational training—that fulfilled the mandate to support orphans and vulnerable children or, as they came to be known, OVC.

As far as I could see, in Uganda, the OVC money poured into the kinds of social support services that resemble summer camp activities: song-and-dance troupes, basket-weaving, support groups. There wasn’t any systematic effort to evaluate the impact of these programs on children’s overall well-being, nor was there a strategic effort to build national programs to ensure that children had housing, sources of income, access to school fees. Some of these more “structural” interventions moved forward, but on a small scale. In the meantime, orphanages and performing troupes proliferated, including fraudulent projects that involved children who had parents but were labeled as orphans so that the proprietor—often a relative—could make a claim the money that was flowing in.

 

I began to spend my time at the clinics sprouting up around the country, gravitating toward pediatric clinics. The staff at pediatric clinics seemed to view me as another child they had to care for, pulling up a stool for me at the nurse’s triage station or in the doctor’s examining room.

Each time I attended a clinic opening, I saw a new song-and-dance troupe. There were always AIDS choruses in Uganda, but now that there was money, they proliferated like a plague of shrill and piping birds. The girls sang soprano songs with hand gestures to match each imploring phrase: love us please, treat us kindly. Oh mother, they sang, oh mother why did you leave? The drumbeats made the boys’ legs fly as though each slap was a shot aimed straight at them and they had to leap up to survive. In the front, there was almost always a tiny specimen: a toddler-child who bent his knees in time with every beat. He clapped his hands. He grinned. The smile never wavered but it changed in the light: now pride, now delight, now confusion, now the drudgery of cheer.

I learned that if it was at all within their means, Ugandan parents dressed their HIV-positive children in their Sunday best for clinic days. The girls wore pink satin dresses floating over layers and layers of polyester crinolines. Keyhole openings at the back of the neck, buttons held fast by tiny satin loops. I recognized these dresses from quinceñera shops in Spanish Harlem, stiff on plastic hangers next to Styrofoam cakes and never-dying lilies. Bought, worn, discarded, packed in crates, sent to Owino market in Kampala, laid on tarpaulins on the side of the road.

Every child looked normal at first. They were all still well enough to walk in. But there were fungal infections on the girls’ heads: shapes like maps of undiscovered lands. The boys, in their collared shirts, had fields of warts – molluscum – climbing out of their cuffed sleeves. A red-haired child wasn’t a rare bird; he was malnourished. Ringworm made coin-shaped circles along arms. White crust in the corners of the mouth: the children hadn’t forgotten to flick it out. It was something that they simply could not clean.

Quite some time went by before I realized that many children did not know why they were there. They did not know that they had HIV. Even orphans brought by relatives were not always told, and were believed to be unaware, that they had the virus. Their guardians would tell them, You need to take your vitamins. You have to be more careful than the other kids you know. There was no way to hide the fact that the child was sick and unlike other kids. But that was not the same as turning the child towards you and looking them in the eye. You were born with something in your blood that could kill you. It was in your parents’ blood before it was in yours. You never had a choice.

There were no clear guidelines on when to tell children that they had the virus, or whether this conversation—the public health experts called it “disclosure”—should be a pre-requisite for starting treatment in some children, at least those over ten years old.

With its ambitious targets and tight timelines, PEPFAR made improvisation inevitable. In late 2004, I witnessed the opening of a pediatric program in Masaka, in southern Uganda. The day before the first clients were expected, the staff sat under the low branches of a tree strung with yarn. Foil-covered letters and fish spun in the breeze while they debated what their approach to disclosure should be. Later, some Americans drove up in an air-conditioned car and the meeting moved inside. I was not invited in. As the door swung shut, I saw concern on the Americans’ faces. This was, and would continue to be, the price of PEPFAR’s speed: urgency teetering on the brink of chaos, particularly when it came to children, time and time again.

 

Where does AIDS come from?”

It was June 2006 and I had been living in Uganda for nearly two years. The question came from a boy with round eyes and an old man’s face. Although Raymond was the size of a ten-year-old, he was about sixteen. Untreated virus stunts a child’s growth. The face alone matures. Children like Raymond have short limbs, wizened brows, and big round eyes. They resemble medieval portraits of the baby Jesus in his mother’s lap, her halo leafed with gold.

Raymond was a client at the AIDS treatment center in Fort Portal, Uganda, on the country’s western edge: a region of crater lakes in declivities and hills rolling ocean-like towards the Rwenzori mountains. The landscape is feminine: all haunches and wet, dark pools fringed with black-green branches. The edges of the bowls are steep. It appears that there is no way down.

Raymond had gotten the virus from his parents, both of whom were dead. He had been raised by various relatives. Standing on the hard-packed dirt of his uncle’s yard he had done what all Ugandan children do: waved at white people in passing cars. One of the cars belonged to Mike, a British man building a luxury lodge on the ridge beside Raymond’s village. Mike took an interest in the friendly, sickly boy. He gave him clothes, food, a place to stay. He also taught Raymond how to strike up conversations with white people.

Raymond brought himself to the clinic. He kept his monthly appointments without fail, arriving with his herky-jerky old man’s walk and his black plastic bag filled with medicine bottles and the exercise book with its rabbit-soft cover that kept all of his records. Because he came alone, he was free to talk to me in a way that the adults—who all eavesdropped compulsively—and the kneeling children in their party dresses could not.

I spent hours a day at the clinics I visited, watching everything without any particular idea of what I hoped to see. It was often lonely and sometimes dull. Raymond was gregarious, even fun. I arranged to visit Fort Portal on his appointment days and, when we exhausted our limited English, I found a translator.

“I have so many questions,” I said to him, one day over lunch at a tile-floored guesthouse just up the hill from the hospital. “I am so happy we can finally speak. But first I want to know if you have anything to ask me.”

“Where does AIDS come from?”

“Where do you think it comes from?” I asked.

“I don’t know, but people say it is a punishment from God.”

“Do you believe those people who say it comes from God? I took a cube of pork from the plate between us, pressed it into the pyramid of salt at the side of the plate and chewed it until the fat turned into liquid, growing hotter, nearly molten, in the corners of my mouth.

“I don’t know,” Raymond said.

“I don’t know where it comes from either,” I said. “But I know that it is not a punishment from God. No one who has gotten AIDS has done anything wrong.”

There might have been a moment when Raymond’s face lightened just a little bit. If it did, it was because I said first that I did not know. Sometimes ignorance is proof that someone can be trusted after all.

 

In those first years, Uganda delivered the speed and success that Bush had been looking for. A Ugandan school teacher swallowed the first PEPFAR-purchased AIDS drug delivered anywhere in Africa. In 2004 and 2005, Uganda exceeded its targets for starting adults on ART and received “performance” bonuses from the PEPFAR head office back in Washington DC. Not all programs were well-designed, but the bottom line was that there were pills on shelves and people were taking them and because they were taking them, they would not die.

OVC programming proceeded with similar speed but with far fewer concrete targets or means of measuring impact. There was a welter of confusion about what to do and who to do it for. Under PEPFAR, 96 percent of Uganda’s children were classified as OVCs. If a child lived with his mother: vulnerable. If he was poor: vulnerable. Hungry: vulnerable. Likely to have to work: vulnerable. There were so many children who qualified as vulnerable and so many PEPFAR-mandated targets to achieve that some of the programs, in a struggle to perform, reported their assessments of children as the services themselves. If a child was asked about whether he or she needed housing, school fees, or health care, answered yes, and was counseled about where to find these things, then three different services were counted as having been offered, even though the program had not provided any of them at all.

 

Draw me something,” I said to Raymond one morning as we sat side by side on the verandah at the clinic. I tried to hand him my reporter’s notebook and pen. He wouldn’t take it and so I sketched two crossed logs with licking flames, and floating just above: a severed foot. “What’s wrong?” I’d asked when I saw him that morning. “Feet of fire,” he’d replied.  His skin from waistband to neck was covered in the white lace of something frosty but not cold. I guessed that the rash was on his feet too, and that it made them burn.

Next I drew a house. Two squares connected with slanted lines to form a cube. A triangle for a roof. He took the pen and paper from my hands and bent down close. Aha, I thought. He wants to learn about this sketchy trick of three dimensions. That wasn’t it. I’d left corners opened where the lines should have met. He wanted to seal them up, solder line to line. When the house was solid, he handed it back.

“Who lives in that house?” I asked.

“A girl named Grace and a man named Moses,” Raymond said. He drew a stick figure with a triangular skirt and a round head.

“Who is that?” I asked.

“That’s Maria.”

“What is she doing?”

“She is waiting for her son Jesus who is fighting in the clouds.”

“Whose radio is that?”

“It belongs to Grace and Moses.”

“Does Grace like to dance?”

“No. Grace likes to cook.”

“Why would you have a radio if you did not like to dance?”

“So you can listen to it and get news from all over the world.”

“Will Maria come in and eat?”

“She will stay out there. Jesus will find her when she is no longer being beaten by the rain.”

“Draw me a picture of yourself,” I said.

He made a little, impatient noise and drew a little owl-faced figure, lacking arms or legs.

“This is Raymond who has lost his health,” he continued.

“What is he thinking about?”

“He is thinking of going home.”

 

What people said to one another over and over again in those first days of PEPFAR: let one thousand flowers bloom. What they meant was: no one can agree on how these programs should operate. Should the AIDS drugs be dispensed from state facilities: a free window, a new service alongside all the other ones? Or should the AIDS drugs be built into new programs, spangled with compassionate features: school fees for children, drama groups, food aid and job training for indigent mothers? The former seemed inadequate, the latter insupportable. Battle lines were drawn. At the center there was this term: adherence. Adherence: taking the drugs every day on time without missing a dose. Adherence: making it to the clinic to get a refill before the pills run out. Adherence: taking TB medication for tuberculosis. Adherence: doing the same thing every day, having enough money, having a routine.

Adherence is everything to AIDS treatment. If drugs aren’t taken as prescribed, they do not quell the virus completely. It keeps on copying itself and learns to evade the drugs. Drug-resistant virus blooms. The expensive medications stop working and new ones need to be prescribed. In 2004, there were few second-line options available. It was essential to get it right the first time. This was particularly true in Africa. The effective AIDS drugs became widely available in developed countries in 1996. It took eight years for them to reach Africa—and one of the main arguments against delivering them to poor people was that the poor would not be able to take the drugs as prescribed. Their lives were too disorganized — no watches, no food to take with medicines that were best taken at a meal. Eventually, these arguments were debunked. But in Africa adherence would still be configured as a form of gratitude the poor should show to their imagined benefactors: a respect for the great gift of medications.

No such demand is made of wealthy people with health insurance. They are counseled to take their drugs on time, to be sure. But they are not put in a position of needing to demonstrate that they deserve them, that they can qualify for this great reward. Perhaps it is this implicit demand made of the poor—show us you are worthy of these drugs—that causes the split in approaches to adherence. Some programs were designed to maximize adherence—to prove that the poorest clients could adhere. These clinics were often equipped with motorcycles, pick-up trucks and four-by-fours. Foot lockers were filled with drugs and charts and gloves. The medicine moved to where the people were, arriving in a rumble of motors and the squeal of springs on unpaved roads. The drugs came to people’s house or to the closest town. If they did not come for the drugs, the clinic would come to them.

On the other hand, there were clinics in hospitals, smelling of Dettol disinfectant, with nurses in color-coded uniforms. They murmured instructions to the client and, for the most part, were very kind. But there was no recourse if the client didn’t come back: the programs at these clinics weren’t built for that. They were built to fit into what already existed. Built, proponents said, to save lives fast, to last.

Raymond’s clinic was run by a Kampala-based group that favored speed over adherence counseling and support. It focused on getting as many people as it could onto AIDS drugs and made a calculated bet that this would save more lives than going slowly and emphasizing adherence along the way. The director of the program argued that people had been dying for too long and that slowing down to build programs with bells and whistles to support adherence would lead to even more people dying. The most important thing was moving drugs into bodies. His programs had basic adherence support but no cars, no field visits, no staff who followed up on clients who failed to return for their appointments.

 

On the continuum of African experiences, children are closer to lions than adults. Most travelers to Africa are offered a visit to a school, an orphanage, or even just a roadside stop where the meat is sold on sticks and the water bottles are balanced in baskets atop women’s heads. The children come running. It usually turns out that the kids are the highlight of a traveler’s first trip to Africa. Looking at these kids offers a contact that travelers can’t get by looking at animals.

You can gaze directly at very poor children in a way that you cannot look at adults. A child is a recognizable thing, even in a foreign place. The sort of relief you feel at seeing something recognizable—it’s right there alongside the satisfaction that a cup of coffee, good coffee with hot milk, brings the morning after you land. The air is hot but you want the coffee hot too, and the first swallow is comforting enough to bring tears to your eyes. You’ve come a long way but you can still get what you need. You need that feeling of being able to take care of yourself, of knowing the name for things.

The longer I lived in Uganda, the less I wanted to feel like a tourist. Sympathy for children began to seem like a rookie mistake. And yet I pursued my friendship with Raymond. He was different. He already had a benefactor. Besides, he didn’t really ask me for anything.

 

Sometime after I left Uganda in 2006, Raymond, who was by then sixteen, took his place on a bench in a crowded fourth grade class. He had a furze of hair growing on his chin. He struggled to keep up. The other children saw that he was credulous.

“The First Lady is coming for you,” his classmates said one day. “She has an orphanage.” She did.

“Here’s the number plate of the car that she’ll be driving. Here’s the place that you should stand to wait.”

They hid in the bushes and watched on the appointed day. He waited for so long. Then his classmates came pouring out. They laughed and laughed. He left school that day and for much of the next two years, he did not return to the clinic. The program had an adherence officer, but no resources to track down patients who’d gone missing. The nurses noticed that he wasn’t coming around, but they had no way to find him.

I did not return to Fort Portal between 2006 and 2010—including the years that Raymond was missing from the clinic. I got married, had a son.

Eventually, I found a nanny I trusted and brought her with me to Africa along with my son. I went back to Fort Portal to find Raymond, thinking that if I did I would find myself again, as I had been on the verandah, when I had my pen and paper and nothing but time.

But Raymond was not there anymore. I found him easily enough—he turned back up at Mike’s—but the boy that I had known was gone. His eyes were blank. He did not smile or look at me and he certainly did not inquire about my son. I asked him if he remembered drawing for me. To every one of my questions, he said: no.

I walked with him from the AIDS clinic to the x-ray house and his gait recalled the pace of my most frightening dreams, the ones in which I am pursued and cannot accelerate, my limbs so heavy they will not obey the simplest command: lift, lower, repeat. He’d once had such a speedy, herky-jerky walk. Now, it seemed, he moved like this all the time.

My own body grew tight with irritation. I wanted to leave. It seemed, all of a sudden, an unbearable obligation that I knew this boy with his illness, his unhappiness, his silence and his maddening walk.

I felt that my very urge to leave meant that I had to stay. And so Raymond and I made a plan to go and see the house where he stayed with his uncle. But instead of directing us to his uncle’s compound, Raymond had my car pull over on a verge at the side of the road where there was no path. I had my son strapped to my chest and when I tried to step across the dusty ditch and into the field where Raymond was waiting for me, I fell down. It had been a dry season and my hands were gray as ash.

“Jesus Christ,” I yelled at Raymond. “I have a baby. There isn’t a path here. This doesn’t make any sense.” I turned away from where he was standing in the field and walked back to the car.

When I first moved to Uganda in 2004, I had been aware of the edge of impatience and disgust that I had felt for all those singing children, but I had also understood how much I did not know. In the years that I was away, I decided that my experience was wisdom after all. It was not that something within me hardened as much as something hard within me was sharpened. PEPFAR had distorted my impulse to generosity, leavening it with skepticism and cynicism until not giving seemed like the more righteous thing to do.

I wondered later: was I less compassionate because of all the time that I had spent in Uganda, or was I able to spend all that time there because I had a certain deficit within me? I feared it was the latter. Even after my first son was born, and I discovered my capacity for nurturing—vast and mysterious as an underground lake—I could still detect that hard edge, a bedrock: the limits of my generosity, even to my own son.

Some months later, back in America, I found an article about children like Raymond who are born with HIV and who have come of age with the PEPFAR program. The adolescence and adulthood of these children is poorly understood. No one expected them to live that long. And so the studies are just now trickling in: these children have, in their adult bodies, terrible pain. Difficulty breathing, chronic skin conditions. They have mental health issues, perhaps due to the virus stowed away in the cells of their brain. They are confused, they lose their memories, they do not always understand.

 

During those years that I was away from Uganda, and Raymond was away from the world, PEPFAR changed. 9/11 lost its immediacy, the global economy collapsed and the reasons for our wars became less clear. Obama was elected and surrounded himself with advisors who, borrowing from the headlines of the time, warned that U.S. investment in AIDS drugs for people who—if the treatment worked—would not die was a ballooning “treatment mortgage.” PEPFAR was a bad investment, one that could not be sustained. There was a freshman class of Republican congresspeople who did not feel any connection to the program or the president who had created it. Obama did not kill the program but he also did not ensure that its funding kept pace with the need. He experimented with slowing the whole program down. In the midst of his first administration, treatment providers in Uganda were told not to start any new clients on ART. This instruction got leaked to the press causing an uproar and, eventually, the directive was reversed. Clinics could start new clients on antiretrovirals—but they could not count on receiving additional funding.

Without the championship of the U.S. president, the most ambitious global public health initiative our country had undertaken in the 21st century became, in its own way, an orphan too.

Uganda changed as well. President Museveni, who had been lauded for his early AIDS response, began to blame Western donors for the rise in new HIV infections. He said that Westerners had encouraged his people to become prostitutes. He scoffed at scientific evidence. His wife led a march of virgins and called for a virgin census as an HIV prevention campaign. More recently, he signed a hateful anti-homosexuality bill into law.

Compassion for people with AIDS in Africa isn’t politically expedient the way that it was when Bush was launching the U.S. invasion of Iraq or Museveni was launching his presidency back in the late 1980s. The AIDS epidemic in Africa no longer grabs at the heart-strings. Its persistence is a sign to some people that programs like PEPFAR have failed.

But perhaps this program never should have been filed under “compassion” at all. That’s an emotional state. When Bush dedicated the U.S. to solving the problem of how to treat and prevent AIDS in Africa, and how to nurture children orphaned by the virus, he launched the public health equivalent of the space race. Compassion is as relevant to the practical details of this work as hope was to putting a human being on the moon.  The emotion is a sort of fuel, but it is insufficient and, at a certain point, irrelevant. What matters is drudgery. What matters is not giving up and going home. Over the years, this is what the story of PEPFAR has become. It is about correcting mistakes, solving the next problem, doing a little bit better than the year before.

Following reports on the many failures of early OVC programs, in 2012 the program issued new, practical guidance on how the money should be spent. It stipulated that program success should be measured in terms of impact rather than raw numbers—what happened, not how many people were reached. These changes took place even as the program struggled to find political support in the U.S. Likewise, Uganda’s AIDS treatment program also showed signs of rejuvenation in recent years, even as national leadership faltered.  Between 2012 and 2013, Uganda doubled the number of people who started on AIDS drugs—in large part because the in-country PEPFAR program set ambitious new targets after years of dragging its heels.

Progress isn’t linear and it isn’t guaranteed but the program feels more honest, in a way, than it did a decade ago when it was supposed to exemplify America’s character even as we went to war.

As for me, things are less clear. “What was that?” I asked Raymond once we’d climbed back into the car and I’d brushed the dust off my hands. “Where did you take me?”

He muttered something to my translator.

“That was his land,” she told me. “He’s building a house.”

I turned back and saw a skeleton of roped-together logs, unroofed and black against the sky.

“That’s not where Raymond said that we were going,” I told her.

When I listened to the recording later, I realized how petulant I sounded. Like a child.

This is the danger: compassion can wane. Particularly when one’s own pain—the rawness that gives rise to a fellow feeling of “suffering with”—subsides. This question occupies me: what fills the vacuum that wounded compassion leaves behind?

The void may filled with a freshened, righteous indignation. What we’ve learned about the object of our co-suffering can be turned against it so that we are not just less compassionate, but more cold. I know you now and so I can care less than I did when we first met. In a better world, what emerges is a commitment made of stronger, less sentimental stuff. I hope it is the latter for PEPFAR and myself. For the U.S. AIDS programs, there are signs that an impassioned practicality may have finally replaced Bush’s dewy ideology. I am less certain about what will become of me and my finite heart. There are many days that I fear I learned the answer years ago, when I reached into my pocket and came out with a broken foot clasped in my hand.

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3 Comments

  • Mark Breda says:

    So, it was all about drudgery eh? Ok, let me consider that. Nice article Emily! I loved the broken toy, the t-shirt wearing missionaries on the Entebbe bound flights, and the virgin parade – and buddy – I’m not worried about your finite heart at all. Thanks for this, it was lovely

  • em-i-lis says:

    This is beautiful and powerful, Emily! Thank you!

  • Romany Redman says:

    Thank you for sharing. Powerful piece. And spot-on, poignant description of adherence as an “implicit demand made of the poor”.

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