Where HIV brings life of fear and isolation


When the light begins to fade each night, thin silhouettes begin moving freely about a treed refuge tucked off the highway on the outskirts of town.

Whether or not there’s food to cook, somebody starts the fire with twigs harvested from the nearby wood; a few sprinkles of gasoline give the flames energy. In the darkness, it’s difficult to tell how many people are living in the handful of flimsy camping tents scattered among the trees.

It’s for exactly that reason that the HIV-positive young women who sleep here – orphaned teens who have been raped and burned and, in one case, blinded in one eye – wait until the sun slips away before they return: If the property owner who lent them space for their tents knew the true size of their group, they would be evicted.

Now, more than ever, they truly have no place else to go.

On Jan. 12, the epic earthquake that rocked Haiti wiped out the downtown safe house that a local HIV-awareness group had rented for the girls to live in.

By then, life had already been especially cruel by several metrics – all were born with HIV and have lost their parents to AIDS. Loss of the space where they had begun to feel human again was crushing: Jacmel is a place where discrimination against people with HIV is rampant. The virus is so misunderstood that people still believe it can be contracted by sharing silverware with infected people.

“When people hear a person has AIDS, he’s fired from his job,” said Moro Baruk, an influential Jacmel-based artist and designer who, after the earthquake, has begun advocating for HIV-infected people. “Children are kicked out of school because they have AIDS. Tenants are kicked out for having AIDS,” he said.

Those who live with HIV know that well.

“A psychologist told me that when you have the virus, you have to live isolated,” said Edeline, a 16-year-old who lived in the house. “He said you can’t live with everybody else. Police should arrest [infected]people for taking from the same water source.”

In the days after the quake, the teens ended up beneath a sheet-and-twig structure on the soccer pitch at Lycee Pinchinat, Jacmel’s largest and most notorious camp for the internally displaced. There, they were taunted and ostracized by others who feared contracting the virus.

And then there was the rape: On a night long before gas-powered light standards were installed on the field, a man crept into the girls’ shanty. His hands fell first upon 15-year-old Katyana. While he forced himself on her, he jammed his hand over her mouth to muffle her screams.

It wasn’t long after that night that Marie-Lucie Mentor, an AIDS advocate with the non-profit group KALMI (which stands for Kombit Aysien Pou Lavi Myio, or Haitian Committee for a Better Life) shuttled the 25 or girls living with the virus at Pinchinat to the new, temporary campsite. She also moved about the same number of infected male teens out of Pinchinat and into an isolated hillside community called LaVanneau, where they’ll stay until she can find better accommodations to replace the safe houses she originally intended for them.

The problem is that there is nothing better emerging on the horizon.

“Every day I’m searching,” said Ms. Mentor, looking exhausted one day recently after returning from a long trek to Port-au-Prince she took in the hope of finding a source to donate food. The look in her eyes says she’s running out of hope.

In recent years, the group has been limping by with sporadic donations from the United States that totalled, in their best year, about $35,000. Before the quake, Ms. Mentor was looking for a more reliable non-government organization to adopt the KALMI cause, which has been credited with helping more than 800 AIDS-affected families here.

But in the aftermath of Jan. 12, the organization’s profile has been buried well beneath the plight of local orphanages and damaged schools that have been showered with tens of thousands of dollars in aid money and an endless parade of hammer-wielding volunteers on pilgrimage to rebuild.

Without connections to a large NGO attracting those volunteers, KALMI and the people that rely on its help has been nearly incapacitated. This month, Ms. Mentor was forced to cancel the 33 support group meetings it usually holds to teach people how to live with HIV and AIDS. All of her efforts, she said, are now devoted to finding food for the people who rely on her. None of them have the strength or health to join the cash-for-work rubble clearing programs the government instituted to replace free food donations from the World Food Program. While there are supplementary food drops for certain at-risk populations, such as pregnant women and malnourished babies, the HIV population doesn’t qualify.

And so as life in Jacmel begins to improve for most people, the isolated KALMI people seem to be growing more desperate.

“Since the earthquake, I feel weak,” said 16-year-old Malia, an orphan with biceps the circumference of a North American teen’s wrists. A deep scar is carved above her left, almond-shaped eye socket – the result of a rape attack two years ago that caused her to go blind.

“Every night I have fear and a headache,” she said, starting to cry. “We aren’t living well here. We don’t have a good doctor to take care of us. At school, they’re teasing me because I’m HIV-positive.”

As teenagers go, her wish list is a simple one: “I would like somewhere to sleep and food to eat,” she said.

In La Vanneau, where a pink and white two-room house owned by HIV-infected parents Rene Serraphin and wife Manose Paul doubles as an orphanage, 10 or so children arrange themselves like puzzle pieces each night on a sheet spread across the cement floor. The set-up stands in stark contrast to the neat, wooden bunk beds that many higher profile orphanages outfitted by Canadian Navy sailors and other volunteer builders after the earthquake.

Here, the daily hunt for food trumps worries over creature comforts. Most children are happy for a roof over their heads, including 17-year-old Jean Ernestzo D’Aout, an AIDS orphan whose aunt made him sleep next to the family’s outhouse before he fled her home.

“It made me think about wanting to kill myself when my own family members were mistreating me,” he said, adding: “Here they are not mistreating me.”