Even though the commemoration of World AIDS Day will be its 32nd year, discrimination and social stigma that has been placed to PLHA (People Living with HIV/AIDS) still commonly happen. Whereas, PLHA has already proven themselves by giving a real contribution.
In Indonesia, some communities are still entangled in discrimination which emerged as the result of intimidation and negative stigma from their social environment. One of the vulnerable communities is the PLHA community. Before discussing further discrimination against PLHA, it is important to understand the HIV/AIDS disease. Human Immunodeficiency Virus (HIV) is a pathogen that attacks the body’s immune system by infecting and destructing lymphocytes CD4 cells and T-cells. The last step of HIV infection is called Acquired Immune Deficiency Syndrome (AIDS) which is marked by the emergence of cancer, infection, or other long chronic diseases.
The HIV transmission process happens if there is direct contact with the body fluids containing HIV. Body fluids are specific include blood, sperm, vaginal liquid, anal languid, and breast milk. Then other body liquids such as sweat, urine, feces, and saliva cannot be agents of HIV transmission. Increased risk of HIV transmission happens only through certain activities, such as sexual intercourse, sharing syringes, blood transfusion, and breastfeeding.
The Ministry of Health of the Republic of Indonesia (2020) revealed that based on data collected by the Provincial Health Department and SIHA (Information System of HIV/AIDS), the age group most suffering from HIV/AIDS is the productive age group, namely the age of 25-49. Because there is no cure for HIV/AIDS completely, PLHA must take Antiretroviral Therapy (ART) for life to prevent HIV from multiplying so that the body’s immune cells can last longer.
HIV/AIDS became one of the deadliest global epidemics in the 1980s as it caused the death of thousands of people. Therefore, since 1988, WHO established the 1st of December as World AIDS Day. This is an important opportunity to raise solidarity against HIV/AIDS, increase public awareness about HIV/AIDS, support PLHA who are struggling, and remember the struggles of PLHA. This commemoration is also used to erase the discrimination of the general public against PLHA. However, in fact, after almost 32nd commemorating World AIDS Day, there is still discrimination and social stigma in Indonesian society.
Discrimination and Society Stigma Against PLHA
PLHA not only has problems in terms of their physical health but also in terms of their mental health. This is related to the case of PLHA who often get discrimination against society. Discrimination is an act, attitude, and behavior that discriminates or behaves unfairly to an individual or group. In this case, people living with HIV/AIDS often get discriminated against by their society, such as from their neighbors, friends, even their family, and paramedics. The form of discrimination received by PLHA is varied, ranging from being ostracized from society, not being accepted by their families, exile by society, to prohibiting PLHA athletes from participating in incompetence. (Humaida & Aotari, 2019).
Not only get discrimination, PLHA also often get social stigma from society. A social stigma is an act of someone who does not accept a group because he/she considers that group to have already been against the existing norms. According to Goffman (1963), as quoted in Hati, Shaluhiyah, and Suryoputro (2017), society considered PLHA as a social norm violator. The public assumed PLHA as a part of society that is embracing and should be shunned because they have a disease. The public often considers PLHA as an enemy of society that is not eligible to have a life.
According to Sarlito Wirawan, a psychologist and Indonesia AIDS foundation activist, the stigma arises because people living with HIV/AIDS are considered as negative things. (Mathari, 2018). HIV/AIDS is labeled as one of the diseases of roguish women, gay, shemale, sex worker, black people, and mucky disease which will be contagious to people around them. PLHA group is associated with an anomaly group that should be despised. People living with HIV/AIDS are labeled as inhibiting factors for national development and the cause of declining community welfare (Aotari, 2017, cited in Humaida & Aotari, 2019).
There is much evidence of discrimination and social stigma against PLHA. As explained above, most PLHA are people of productive age. In this age, people are required to work, no exception for PLHA. PLHA who work is vulnerable to get discrimination and stigma from their workplace. The discrimination act coming from the coworkers who refuse to sit next to or even having a slightest contact with PLHA.
Moreover, PLHA faces difficulty in getting work promotion. Ria Pangayow from ARV Community Support IAC revealed that there were PLHA who were laid off from their workplaces. The government has issued a Decree (SK) of the Minister of Manpower and Transmigration of the Republic of Indonesia Number 68 of 2004 Article 2 Paragraph (2) Letter (c) concerning the Prevention and Handling of HIV/AIDS in the Workplace which states, “Employers are obliged to provide protection to workers/ Workers with HIV/AIDS from discriminatory acts and treatment”. Even though there are clear regulations, several companies remain indifferent and refuse to comply with these regulations.
Meanwhile, there are also several examples of discrimination against PLHA in the community (Humaida & Aotari, 2019). The Community Legal Aid Institute (LBHM) collected cases related to discrimination and social stigma against PLHA. There was a case in Sukoharjo Regency, Central Java, where the local community refused to wash the bodies of PLHA corpses due to fear of transmission.
Furthermore, there was one case of discrimination that occurred in Papua in 2018. Prospective athletes who will take part in the National Sports Week (PON) must carry out a series of health tests, in which one of the indicators to pass the selection is HIV free. The results of the medical tests showed that several prospective athletes were declared infected with HIV and had to end their hopes of competing in the National Sports Week (PON). Athletes with HIV can exercise normally as long as they comply with taking ARV (Antiretroviral) drugs.
In addition, PLHA also often experiences violations of privacy rights. The violation that occupies the top position is HIV examination without the patient’s consent (Humaida & Aotari, 2019). This action violates one of the points in the WHO PITC (Provider Initiated Testing and Counseling) guidelines. PITC puts forward the “3C” principles, namely Informed Consent (getting patient consent), Counseling (getting adequate post-test counseling), and Confidentiality (maintaining the confidentiality of patient information) (Ministry of Health RI, 2010). Thus, testing for HIV without the patient’s consent is a violation of the principle of informed consent.
Stigma and discriminatory treatment carried out by the community make PLHA unable to obtain human rights. PLHA feels ashamed, isolated, even considered low by society. When under pressure from the community and health workers, PLHA tends to be enclosed about their illness and are embarrassed to have their health checked. They find it difficult to obtain good and adequate health services. This makes the risk of death and transmission of HIV/AIDS in the community quite high.
All of the stigma and discrimination have given to PLHA is evidence that people still have lack knowledge about HIV/AIDS disease. Society thinks that AIDS disease can be contagious with bare skin touch or just being around the patient. This lack of knowledge caused misunderstanding of society against PLHA.
Contribution of PLHV for Indonesia
Discrimination against PLHA seems to ignore the fact that PLHA is also capable in contributing to society. HIV/AIDS does cause some significant changes, such as weakening the body, and so on. However, this does not mean that PLHA is weak and unable to carry out their activities. There have been many examples of PLHA who perform their achievement with the hope to break the negative stigmas of HIV/AIDS.
The first example of PLHA is Eva Dewi Rahmadiani. Even though she has HIV in her body, Eva has shown that she is capable of doing strenuous exercise, an activity that is considered incapable by PLHA. This woman is active in boxing, marathon running, and soccer. Not only active, but Eva also scored achievements in this field. Eva is noted to have represented Indonesia at the 2016 football festival in Lyon, France, one of the series of events that opened the European Cup. Eva is also the only woman who is part of the Indonesian national team for the 2018 Homeless World Cup in Mexico. In the field of marathon running, Eva managed to reach the finish line of the 2018 Jakarta Marathon. Through her sports activities, Eva Dewi has proven to the general public that PLHA is not weak. Football, which is prone to body contact between players, does not necessarily make Eva an HIV/AIDS transmitter because this disease is not contagious that easily.
Evidence of the contribution of PLHA in society is also shown by Wijianto ‘Gareng’, a PLHA volunteer at the Nahdlatul Ulama Disaster Management and Climate Change Institute (LPBI NU) Pasuruan who received a certificate of appreciation from the World Indonesia Achievement Institute (LEPRID) Semarang in September 2020. He has educated the public about HIV/AIDS in 110 districts/cities in 30 provinces on foot for two years, an activity that is not necessarily possible for people without HIV/AIDS. There is also Endang Jamaludin, a person with HIV who is active in running competitions. According to him, as long as they adhere to ARV drugs, PLHA can carry out their normal activities. In addition, the achievement also came from PLHA Tri Eklas Tesa Sampurno who successfully represented the national team in the 2011 Homeless World Cup, Paris. In the 2018 Jakarta Marathon, Tesa managed to reach the finish line after crossing a 42 km track.
Evidence of the contribution of PLHA is not the only irrational reason for discrimination acts by the general public. With or without a contribution, PLHA is also human beings who need love and attention from their surrounding environment. Trapping PLHA in a discriminatory environment is very irrational. Understanding that HIV AIDS is not transmitted other than through the transmission of blood fluids, is an additional reason not to keep PLHA away from a supportive environment.
Discrimination and stigma against PLHA must be stopped immediately because every human being has the right to get a decent life. Discrimination acts will never be justified, neither will stigmatization. Cases of discriminatory actions against PLHA can make PLHA lose the opportunity to get proper care and treatment.
With the disappearance of discriminatory attitudes and stigma towards PLHA, it is hoped that a more friendly and open social environment will be created for PLHA. Thus, PLHA can more freely channel their contribution to the community.
Authors: Ericka Mega, Rivaldy Arief Nugraha (Intern)
Editor: Irma Hidayah
Illustrator: Rona Iffah (Intern)
Translator: Lisa Rahim
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