William leads HIV-positive men and society toward greater understanding

KAMPALA, UGANDA – Most nights, William* slept on the floor of Mulago Hospital. It wasn’t ideal, but he couldn’t stay in his house anymore. It reminded him too much of his wife, and he couldn’t afford it anyway after losing his job. This was in 2003.

Earlier that year, he had been diagnosed with tuberculosis and HIV, the virus that causes AIDS.

He was gaunt, weak and afraid of the future. But in retrospect, he now thinks that diagnosis was exactly what he needed.

The epidemic

Uganda was unique in its response to the epidemic. By 1989, just a few years after the first case in the world was officially recorded, the country’s prevalence rate reached 18 percent—one of the highest in the world. But while most African leaders shirked their responsibility to educate the public about HIV, the recently-elected Ugandan President Yoweri Museveni publicly addressed the epidemic and urged the country to follow a multi-sector prevention plan.

The plan was known as the “ABC,” which meant that Ugandans should remain abstinent for as long as you can, be faithful to a limited number of sexual partners when you cannot and use condoms as a last resort.

Soon, ABC permeated the country in the form of billboards, radio announcements and rallies. Teachers introduced HIV education into their curriculum. Health centers provided free condoms.

photographs line the wall of a small room

William’s home is lined with pictures of his wife, children and awards he has won from HIV advocacy groups. He and his wife moved in after living at Mulago Hospital for about four years. (Christine Stephenson | The Media School)

Uganda’s prevention efforts, in combination with advances in medication, yielded unprecedented results. As of 2016, the prevalence rate is 6.5 percent. That number is far from ideal, but it is the lowest it has ever been since the HIV epidemic began.

Nevertheless, Uganda’s efforts are far from perfect. Teenagers and adults alike too often disregard prevention advice. Teachers have become lax about HIV education, and stigma against HIV-positive people still causes discrimination and prejudice.

According to the country’s 2013 People Living with HIV Stigma Index, over 60 percent of respondents reported low self-esteem because of their positive status. Over 50 percent reported suicidal thoughts.

Uganda has made significant headway in the effort to end HIV, but the fight is far from over.

A rude awakening

Ever since primary school, William had wanted to be a teacher. He enjoyed English and mathematics, mostly because he was so good at them.

“It’s my passion,” he said about teaching math. “I want everyone to enjoy it as much as I do.”

When he landed his first teaching job, he was overjoyed. But mostly, he was relieved to have an escape from an abusive wife at home.

“She would mistreat my girl,” he said. “The child should not suffer because of the adults. They should not be afraid to come home to say hi to daddy.”

William left his wife in 2003, but shortly afterwards began losing weight and developed a persistent cough. He had been so stressed with his home life that his health was sidelined.

He went to a health clinic where he tested positive for tuberculosis.

“I thought surely it can’t be because I don’t smoke,” he said.

HIV-positive people who are not on antiretroviral therapy often develop tuberculosis due to their weakened immune systems. William’s doctor recommended that he immediately test for HIV.

Another positive.

“I felt like God was punishing me,” he said.

It was clear that he could not handle the stress on his own. After separating from his wife, he chose to rely on his coworkers at school for support. First, he disclosed to his boss.

“He said, ‘Sorry, you will not be able to carry on with this work because you are dying,” William recalled. “Back then, people had not known HIV and they thought you would automatically have to die.”

Bright Future Primary School provides boarding for some students. On most weekdays, William himself sleeps at the school because it is a far drive from his home. (Christine Stephenson | The Media School)

Even though he was placed on antiretroviral drugs which would restore his immune system and eventually prevent him from spreading the virus through sexual transmission or otherwise, William was indefinitely suspended from his teaching job.

With nowhere else to turn, he joined a peer support group for HIV-positive patients at Mulago Hospital, the largest public hospital in the country. Shortly after, he took the position as “peer father” to mentor his own group and met a woman named Judith. She was a HIV-positive peer mother.

Today, William and Judith live in a house together on the outskirts of Kampala. They have been married for 11 years and have four children together, all of whom are HIV-negative.

Men supporting men

Throughout Uganda, dozens of organizations and initiatives are set in place to support women and their health, but organized support for men is sparse.

In 1993, a group of eight HIV-positive men created a group called The Positive Men’s Union (POMU) to encourage men to get involved with HIV testing, treatment and education.

“The women were already organized,” said Richard*, a founding member of the organization. “It is men who were the problem.”

According to a 2016 Uganda Demographic and Health Survey, almost 10 percent fewer men ages 15 to 49 had tested for HIV in the past year than women.

Dr. Stephen Watiti, senior medical officer at Mildmay Hospital, sees this kind of behavior every day at work. There are noticeably less men than women who come in for help, he said.

“Men have poor health-seeking behavior,” he said. “It could be embedded in culture and upbringing.”

William joined POMU the same year as his diagnosis to rely on the support from other HIV-positive men. One of his favorite parts is sharing his story with new members to show they are not alone.

“I wanted to empower fellow men,” he said. “I wanted to show them that I am living and I am moving on.”

Living positively

William leans against the rainbow-colored gates and watches students wander past his office. He isn’t scheduled to today, but that doesn’t stop him from bursting into classrooms.

He enters a room of P7 students, most of whom are about 12 years old, and interrupts the teacher’s lesson. Everyone stands to greet him, some with utmost respect and others with the disinterest of a typical preteen.

“Who here knows how someone can get HIV?” he asks. Nearly every hand in the room raises.

William has been teaching at Bright Future Primary School in Kampala since 2012. He was hired regardless of his HIV status.

As head teacher, he is determined to incorporate accurate HIV education into the school’s curriculum. He believes that if the youth are educated as much as possible about HIV while in school and learn to speak openly about it, then they will not have to be afraid, even if they are positive.

“The moment you accept your results and you are not in denial, then the rest of your life is going to be fine,” he said.

*William and Richard chose to be identified by their first names only to protect themselves from the stigma that often attaches to HIV-p
ositive people.