Dreams and Discrimination: Living with HIV/AIDS

Author: Teguh Harahap, Nadiyah Rizki

At first glance, there’s nothing particularly special about the Hospital of Huria Kristen Batak Protestan (HKBP) in Samosir Regency in North Sumatra. But a separate building at HKBP is home to 11-year-old Viktor, 10-year-olds Elfrida and Akmaria, six-year-old Maria and three-year-old Robet*. Their faces shine with excitement as they welcome New Naratif, and they run around like most other children their age. Behind the cheerfulness of their innocent faces, though, is a difficult reality that makes their lives very different from their peers.

All five children are orphans living with HIV, currently under the care of the local HKBP AIDS Committee. Their caregiver, Eni Verawati Simanjuntak, tells New Naratif that the children had contracted HIV from their parents. They’ve all come from different parts of North Sumatra, but are now bound together by the fact that their relatives and communities have rejected them.

“They all are here because the people in their home areas, and even their families, reject their existence. Only Elfrida’s [80-year-old] grandmother still wants to meet her,” Eni tells New Naratif.

Many people often mistakenly conflate one’s HIV status with having AIDS. In fact, HIV stands for Human Immunodeficiency Virus, and, as the name suggests, it’s a virus that attacks the immune system, making it unable to work properly. AIDS stands for Acquired Immunodeficiency Syndrome, the final stage of HIV infection. Not all of the children have AIDS, Eni explains. Akmaria and Robet are HIV+ but have not developed AIDS.

“For Akmaria and Robet, they are categorised as people with a second stage of the HIV virus,” Eni says. This second stage is known as chronic HIV infection, and while there might not be  HIV-related symptoms, this stage could advance to AIDS if the individual does not have the right treatment.

Misconceptions and rejection

Moving to HKBP hasn’t marked the end of the children’s problems. Nelva, another volunteer caregiver, says that the children are also rejected by the local village community.

There are misconceptions among the villagers that HIV can be transmitted through touch, the sharing of food and drinks, or even through the air. It’s triggered needless panic among the community, leading to discrimination and even punishment for the children. Beyond being kicked out of school, the local community has even asked for the children to be taken to the forest, far away from the settlement, so as not to transmit their virus to others.

“They all are here because the people in their home areas, and even their families, reject their existence”

Nelva says the local health service has conducted multiple counselling sessions in the village, including in several schools, to reach out to the local community and explain that HIV/AIDS isn’t transmitted as easily as they think. Yet success has been limited; it’ll take much more time and work to shift deeply entrenched mindsets that have pinned HIV/AIDS as an “cursed disease”.

“Even when the latest counseling was conducted recently, the local community verbally attacked the officers who did the counselling. It is as if the local community including the parents are very confident that the officers will do the same thing if they are in the same position as them. What’s worse, there are some parties who spread a hoax in the local community that I and other volunteers have contracted HIV/AIDS,” Nelva says.

Residents of the village tell New Naratif that they don’t want the children anywhere near them. “I really don’t agree to them living in this village, especially when they go to the same school as my child. Imagine if a mosquito bites the children with HIV/AIDS, then bites another person… surely that person will also be infected with HIV/AIDS,” says Rosliana, a local mother. She’s confident in her assertion—the health service’s counselling sessions don’t seem to have had an effect.

Rosliana tells New Naratif that the villagers have volunteered to help clear new land in the forest and construct buildings for the children to live in, on the condition that it’s located far from other residential areas.

“We have to protect everyone”

The intense discrimination experienced by Maria, Viktor, Elfrida, Robet, and Akmaria has limited the scope of their daily activities, leaving them unable to move around or play like other kids. Maria, Elfrida, and Akmaria had previously enjoyed going to elementary school, but had to be taken out after the parents of other students discovered they had HIV/AIDS. They are now homeschooled by volunteers.

The local government has provided some support, but Nelva says it isn’t enough. While the government provides limited aid such as books, clothes and food, the children’s needs go far beyond that.

Elfrida longs to go to school again. She misses her old classmates, and the games they used to play together.

“I used to go to school everyday to study and also play with my friends. I said to Mrs Bertha [her homeroom teacher] that when I grow up, I want to be a hairdresser at the salon,” she tells New Naratif. But when word spread that she was HIV+, parents forbade their children from playing with her, and her friends began to keep their distance.

“Me and the children want the government to fight together with us to convince the local community that people living with HIV/AIDS should not be discriminated against like this. [We want them to do more] than tell us to allocate these children to other isolated places or homeschooling, because it’s tantamount to discrimination,” Nelva says.

“[We want the government to do more] than tell us to allocate these children to other isolated places or homeschooling, because it’s tantamount to discrimination”

At the moment, the Samosir District government appears to be caving in to the prejudice of the local community, pandering to their demands by saying it will create a separate schooling system for the children. Rapidin Simbolon, the District Head of Samosir, confirmed this after Maria, Elfrida, and Akmaria were expelled from their school.

“We have to protect everyone. We guarantee the rights of children infected with HIV, we also guarantee the rights of healthy children. If all the parents of these students withdraw their children from the school, and only children with HIV/AIDS stay in the class, is this the best way?” Rapidin told the local media.

Even though there have been campaigns on HIV/AIDS, there are still many people in Indonesia who do not fully understand it. Since HIV and AIDS are often associated with sex, drug use and death, the issue tends to trigger a moral panic, making it difficult to combat the prejudice. This can be seen through the social stigma that leads to discrimination faced by the children living with HIV.

Elfrida tells New Naratif that she’d like to go to a playground located on the shore of Lake Toba—the largest crater lake in the world and one of the main tourist attractions in North Sumatra. It’s a wish that’s actually very easily fulfilled for other children her age, but not for Elfrida. Due to her HIV status, she’s not welcome there, and is expected to spend the rest of her life in quarantine.

“I’ve always wanted to go to a playground on the shore of Lake Toba because when I was at school before, many of my friends used to go there with their mothers. And they also said that the playground was very fun since they could also swim on the beach,” Elfrida explains. “And I have asked Mama Eni and Nelva several times to go to the playground, but until now I have never gone there.”

Living with HIV/AIDS - New Naratif
Nadiyah Rizki

This discrimination has greatly affected the children’s opportunities to be a part of society. Their only chances to encounter the world outside their HKBP environs come when they’re invited to attend government-run programmes on HIV/AIDS or human rights. Their daily activities must otherwise only take place within the confines of the backyard of the HKBP hospital.

To make up for this marginalisation, the volunteers of the HKBP shelter often take the children home with them whenever they have time off for the holidays.

“If I am off duty, I always take some of these children to my home, and some of the other children [will go] with Nelva. I never thought of leaving them here, even though there are other volunteers who temporarily replace me during my vacation time,” Eni says.

Nelva says her family had at first been worried about her working with children living with HIV, but calmed down after she explained more about the condition. “In fact, when I take the children to my family, my parents and siblings treat them as part of our own family,” Nelva says. It’s the same with Eni’s family, who are happy to welcome the children into their home for visits.

Care and affection

Being HIV+ doesn’t make the five children any different from other kids their age. Like their peers, they too want affection and attention. During New Naratif’s visit to the HKBP shelter, we witnessed close bond between the children and the volunteers. The children even address Nelva and Eni as “Mama”.

Eni and Nelva are both church servants of HKBP, currently carrying out their duties as volunteers under the HKBP AIDS Committee in Balige City. They were only expected to serve as volunteers for a year, after which they’d receive official appointment letters from the HKBP Church granting them access to various facilities and compensation provided by the church.

Eni and Nelva have actually already received their official appointment letters and are no longer required to stay and care for the children. But the two women have chosen to stay, and say they have no desire to move on to any other assignment. Regardless of their original plans, their attachment to the children keeps them tied to this shelter. Receiving the official appointment letter, they say, is no longer significant; they simply want to make sure that Maria, Viktor, Elfrida, Robet, and Akmaria are happy.

“My priority now is to try my best to do anything that will give the children moments of joy in their lives”

“I have never thought to move from here. How could I be away from these children? My priority now is to try my best to do anything that will give the children moments of joy in their lives. That’s all,” Nelva tells New Naratif as she hugs Robet, fast asleep on her lap.

The children, too, have big dreams. Viktor, the oldest of the five, lost his father to AIDS three years ago. His goal, he tells New Naratif, is to care for the family he has now: “When I grow up, I want to be a police officer, so I can always look after and protect Mama Nelva and Mama Eni.”

* Names have been changed to protect privacy.


Teguh Harahap

Teguh Harahap is a freelance writer and translator based in Medan, Indonesia. Previously he worked as the editor of Koran Kindo, a weekly newspaper for Indonesian migrant workers based in Hong Kong.

Nadiyah Rizki

Nadiyah is a freelance illustrator/comic artist based in Bandung, Indonesia. With her growing passion for visual storytelling, she makes art which is close to heart. Her works can be found at nadiyahrs.com or instagram @nadiyahrs. Reach her at nadiyahrizky@gmail.com.

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