Stigma obstructs rights protection of children with HIV/AIDS

Communities should be encourage to show solidarity with children with HIV AIDS.

The World AIDS Day on December 1 has been commemorated for 30 years, yet the children who suffer from HIV/AIDS in Indonesia has yet to receive as much attention as the adults who are infected by the virus.

Children with HIV/AIDS experience discrimination and have been obstructed from accessing their basic rights, such as education and shelter, from a young age.

Jakarta and Surakarta have seen children with HIV/AIDS being expelled from schools due to pressure from other parents.

This kind of treatment is not limited to schools. In Surakarta, a shelter for children with HIV/AIDS run by Lentera Surakarta Foundation had to relocate several times in one year due to the rejection from the local community.

Our research that we conducted in 2016 in Jakarta and Surakarta shows that stigma and discrimination are two main factors that stops children with HIV/AIDS from receiving their basic rights.

Indonesia’s central and local governments have enacted a number of regulations to ensure these rights are met. But implementation have floundered.

Meanwhile, the number of people with HIV/AIDS, including children,, has been increasing. As of December 2016, Indonesia’s Ministry of Health has counted more than 5,000 Indonesian citizens aged between 0-19 years old suffer from HIV/AIDS.

Support for children who live with HIV/AIDS

There are a number of community organisations in Indonesia that specifically advocate for children who live with HIV/AIDS.

Lentera Anak Pelangi has accompanied 96 children in Jakarta. This institution provides health and psychosocial support, case management, as well as advocacy. They believe that the best place for children to grow is with their families , so they can live and be taken care of in a community of caregivers.

In Central Java, Lentera Surakarta Foundation, founded by Puger Mulyono, has a shelter to accommodate a dozen children. The children in this house are not only from Solo, but also from another districts, like Batam and even Papua.

Following the rejection from the locals about living among children with HIV/AIDS that were staying in Lentera Surakarta’s shelter, the Surakarta administration is building a new shelter house at a location in the city.

This shelter is expected to provide children with HIV/AIDS a permanent space that meets their health requirements. This shelter house children with HIV/AIDS who rejected by their families.

Besides managing shelters, Lentera Surakarta also looks after 101 children with HIV/AIDS who live with their family in Central Java and East Java.

Duty bearers commitments and challenges

The government has actually shown its commitment to fulfil the rights of children with HIV/AIDS by issuing regulations that impact various sectors.

Beyond regulations about HIV/AIDS, rights protection of children with HIV/AIDS has also been reinforced through the Health Law (Article 137), Social Security , Child Protection Law (Article 2 and Article 67C), Law on Education System (Article 4, 5, 6, dan 12), Law on Social Welfare and a 2010 ministerial decree about the Guidelines for Children’s Social Welfare.

The government is also working on a HIV/AIDS National Prevention Strategy in the education sector. The draft is currently being reviewed by government institutions, such as the Ministry of Education and Culture, the National AIDS Commission, and other institutions.

Unfortunately, the government’s commitment has not translated to policy implementation. Some classic problems in terms of coordination between different institution and budget allocation still occur. Furthermore, not all government sectors work in sync to protect basic rights of children with HIV/AIDS.

It’s informative to learn that when the government takes firm actions against perpetrators of discrimination against children with HIV/AIDS, such as replacing headmasters and giving warnings to the discrimination act perpetrators in the case of public school in West Jakarta this year, it doesn’t necessarily bring positive changes to the child’s life.

The child who were involved in the case still could not access formal education after his expulsion. In other words, law enforcement might deter discriminative practices, but it does not ensure the rights of the child are fulfilled.

Stigma in the community

This shows that there are structural problems in the protection of children with HIV/AIDS in the form of stigma. The government and the civil society acknowledge that stigma against children with HIV/AIDS creates an obstacle to effectively protect their rights.

In general, people understand that HIV/AIDS is an infectious disease. However, this knowledge has not been followed by an understanding that the HIV/AIDS transmission is not that simple compared to the transmission of another infectious disease such as tuberculosis.

Additionally, people have have no understanding on how to live side-by-side children with HIV/AIDS. People also still associate the children with HIV/AIDS with the actions of their parents which they consider as negative.

Encouraging the role of communities

There should be efforts to ensure that all elements of the society, not just the government, support the protection of rights of children with HIV/AIDS. Even though it is undeniable that the government still needs to improve the managerial and budget allocation capabilities.

The government should provide a complete and accurate information about HIV/AIDS to reduce and eventually eliminate the stigma surrounding HIV/AIDS. Communities need to be involved as much as possible.

Communities need to be involved in ensuring children with HIV/AIDS receive their basic rights. They should be encourage to show solidarity with children with HIV AIDS.


Muhammad Diaz Kurniawan, an intern researcher in UGM’s ASEAN Studies Center, was involved in the article’s writing process.

This article was originally published in Indonesian

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