Straining to Treat Jakarta’s Transgenders
In a room of 20 people, Linda stands out. While others sport colorful T-shirts, skimpy outfits or dresses, Linda chooses to dress like a man, wearing a pair of loose jeans and a thick jacket that she grips tightly to her chest on this searing hot day.
Linda (not her real name) lays quietly on a worn sofa, legs outstretched, her head resting on a cushion. The rest of her transgender friends text or chat among themselves as they wait for the weekly gathering of their HIV/AIDS support group to start.
But then Linda abruptly collapses, sending a jolt of panic through the room. Those who do not know her well can only whisper. The host of this beauty-salon-slash-foundation headquarters is summoned, a 60-year-old transgender named Nancy Iskandar.
In another room, a plastic mat is quickly spread across the yellow tiled floor, on top of which a thin mattress is laid. Linda’s agony shows in every step she takes to get to the other room.
Nancy tells Linda to lie down and preps a nearby oxygen tank. She checks Linda’s pulse, tightly gripping her wrist with two fingers. Nancy had done this hundreds of time, and it shows.
“What’s your name?” Nancy asks.
Struggling to breathe, Linda can only lay in silence. A friend reveals her name.
“I haven’t seen you in a while. Have you been taking your medication?”
Linda is unresponsive, perhaps from fatigue or embarrassment. It has been three months since she last visited the Srikandi Foundation, headquartered in a decaying house in the poor and congested neighborhood of Jatinegara, East Jakarta.
Linda hasn’t taken her antiretroviral (ARV) pills for three months, because, she says, she couldn’t stand the side effects, which range from nausea to rashes.
“We have a stubborn one here,” Nancy tells me. “Her health is deteriorating. She has developed tuberculosis. She has AIDS already, which means her immune system is deficient.”
An assistant grabs a book containing records of all the transgender people living with HIV who have come to seek Nancy’s help. Sure enough, Linda’s name appears. The list is long, and stretches back in time to when Nancy established the Srikandi Foundation in 1998.
Finding a niche
Srikandi started as a training center to redirect transgender people away from prostitution. But since transgender sex workers are group keenly affected by HIV, Nancy began to notice her pupils’ ailing health. She felt compelled to help, learning all she can about the disease, despite a lack of formal health training.
As Nancy’s efforts soon became known, she found herself treating more and more people. Transgender individuals in Indonesia suffer discrimination and rejection from friends, family and neighbors, so they had little choice but to seek help from people like herself, one of their own, Nancy said.
“In the beginning, I had to knock on many doors. Now I know who to call for extreme cases. I know who to call when I need oxygen tanks, ARV drugs and condoms,” Nancy said.
“I’m just bridging the transgender community with the proper health treatment they deserve. Most transgender people in Jakarta are from villages, dropping out of school and running away from rejection back home.”
When Nancy returns to the crowd, the mood has changed. Linda’s sudden collapse is enough to get them talking about their own experience with the disease.
Nancy breaks the ice by telling her staff to fetch a big red plastic bag. “Who wants some candy?” Nancy shouted, waving a pack of condoms in the air.
The group replied in cheerful, high-pitched screams with a hint of baritone.
Doing what it takes
By noon, more people joined the meeting, all of whom had to take a daily dose of medication to suppress the HIV virus. They talked about the importance of taking those drugs despite the harsh accompanying side effects.
“We have all been there. Over time these side effects will go away,” said Henny, a coordinator at the foundation and one of the first people living with HIV that Nancy helped.
“It is important for you to keep taking your medication, because the one you are taking now is subsidized by the government,” she explained. “If you don’t take them regularly you will have to take even stronger drugs that are not subsidized by the government.”
HIV and other sexually transmitted infections are not the only medical problem the transgender community faces. “Some of my transgender friends are taking birth control pills to look more feminine,” says Lulu of Suara Waria, a youth transgender group that Nancy also helps manage.
“It is much cheaper than an estrogen shot. But … all sorts of side effects can occur,” Lulu said.
“Then there’s the use of silicon which can cause problems like leakage and infection, especially if they get it from some beauty parlor instead of a real doctor.”
The scope of the issue
According to Indonesia’s National AIDS Commission 2006 estimate, 35,000 Indonesians are transgender. How many live in Jakarta is unknown, though more and more are believed to arrive in the capital each day searching for work and a modicum of acceptance.
Nancy said her group estimated that there are around 4,000 transgender Jakartans, 38 percent of whom live with HIV.
The 2011 Integrated Biological and Behavioral Survey estimated that 22 percent of transgender Indonesians are living with HIV. The study also found the HIV prevalence among transgender Jakartans was higher than the national average at 30.8 percent.
“I know one transgender person who has been HIV positive since she was 13 years old,” she said.
New people seeking services from Srikandi were straining the underfunded foundation’s resources, Nancy said. On busy days, a room may be so packed with the sick that she has to borrow mattresses from neighbors.
Nancy said that in a single month she loses up to five patients, all succumbing to AIDS-related illnesses. Most times, she arranges their funerals herself, paying for the grave and procession by raising funds from the transgender community.
Other times, all the expenses come out of her own pocket.
Nancy said she always tried to reach out to her patient’s family with the hope that news of a dying member would rekindle broken ties. This doesn’t always work.
“Once I had a patient so gravely ill that the doctors only gave her days to live. I tried to contact her family but they don’t want to have anything to do with her. Even when she died, they wouldn’t come to her funeral,” she said.
“The night after the funeral, her mother came. The mother asked for her daughter’s death certificate and a doctor’s note detailing how she died. I politely asked ‘What do you need them for?’ And she replied ‘I want to claim my son’s insurance.’
“At that point I was so enraged. I tore up all the documents she had asked right in front of her face. Does she think transgender people are animals? Was her daughter doing more good to her dead than alive? I screamed so loud, and told her to leave. If she hadn’t left, who knows what I’d do,” Nancy said.
Making her rounds
After the support group wraps up, Nancy takes me to a nearby clinic for an appointment with a gravely ill transgender patient too sick to be treated at the foundation.
The clinic is small and basic. It is clear that Nancy has been sending many of her patients here. She is immediately greeted by legions of staffers, doctors and nurses when she arrives.
At the clinic, I get a glimpse of Nancy’s more humorous side, which I suspect is her way of dealing with the tough nature and harsh reality of her work.
“Excuse me doctor, I need your help. I fell down the stairs and landed on one of my testicles. Now one of them is bigger than the other,” she jokes while sticking her head into the open door of a doctor’s office.
“Let me get the other one to swell as well. That way they can be nice and even,” the doctor replies.
We are just minutes away from when her patient is supposed to arrive. As we wait, Nancy tells me stories from her younger years, a time when she was known by friends as Nandy; how her military father was enraged when he caught her sleeping with a man.
She also tells stories from her times as part of a traveling cabaret, and how she later became the only openly transgender civil servant in Indonesian history, charged with getting transgender people off the streets and into skills training or treatment.
Before we know it, we have waited for nearly an hour, and still there is no sign of her patient. “I am a punctual person. I think we have waited long enough,” she says.
“If we’re lucky she’ll reschedule. I just hope she’s not stubborn like the one before.”