Heavy rain greeted the LeaN On team upon our arrival in Bandung. We visited Paris van Java, also known as Indonesia’s city of flowers, for a glimpse of the inclusive COVID-19 risk communications in greater Bandung. Heartwarming stories we have heard during virtual exchanges encouraged us to meet some of the caseworkers and program participants in person to dive deeper into their experiences.
Battling Stigma and Misinformation
Our first meeting was at a modest kiosk where Sri, a program participant, manages a laundry business. While waiting for her customers, Sri started to share a story of her 10-year-old daughter who had a high fever and diarrhea a few months ago. The little girl has a medical condition that makes her highly vulnerable to severe COVID-19. What started as concern about her daughter’s health condition soon became a dilemma. A family member who lived under the same roof was against the idea of taking her daughter to a health facility for further examination. The reason was ironic: she was afraid that the child would be “covid-ed” (diagnosed and labelled as COVID-19 patient).
“Covid-ed” or in Indonesian: “di-covid-kan” is a term that the public often uses to express doubts on COVID-19 and concern about the stigma that haunts those who contracted the virus. “She was worried about what the neighbors would say, also about losing her job if her employer finds out that she lives with a COVID-19 patient at home,” Sri explained about the concerns of the family member in question. However, the child’s health and safety are, of course, the priority for a mother. Thankfully, Sri had previously received COVID-19 risk information and prevention education from Adit, a LeaN ON caseworker. Sri then contacted Adit to discuss her situation and dilemma.
Adit, who is in charge of carrying COVID-19 risk communication outreach under the Female Plus and the Human Initiative’s supervision, encouraged and helped Sri to examine her daughter’s health condition. Alas, the little girl tested positive for COVID-19. The health worker immediately took care of her, then directed the two of them to carry out self-isolation at home. Sri was grateful that her daughter was able to recover in a relatively short period of time. If only she was carried away with doubts about the truth of COVID-19 and fears of stigma, it could have been too late to treat her beloved daughter.
Stigma is not the only challenge that Adit and other LeaN On caseworkers had to address during the outreach. Quite often, caseworkers had to demystify misinformation and hoaxes first as program participants would confirm their doubts on COVID-19 by referring to conspiracy theories from varied sources. In this situation, Adit would have to provide strong arguments to convince the participants of the truth and dangers of COVID-19 before providing prevention education effectively.
According to Adit, the ever-changing information as well as inconsistent social restriction policies and enforcement escalated public doubts and greatly influenced the spread of various conspiracy theories. “From the beginning of the pandemic last year, a lot of information keeps changing. From mask to isolation rules. Furthermore, the closing of public places for social restriction purposes has also been inconsistent. This made the participants even more confused: does COVID-19 really exist or not?” said Adit, imitating a question he heard from program participants.
Varied Attitudes and Behavior Change Challenges
Okkeu, anotherLeaN On caseworker we spoke to in the southern part of Bandung, expressed the same concerns around stigma and misinformation. In his opinion, the revision of COVID-19 related regulations that happens way too often has triggered presumptions among the community members. Interestingly, Okkeu observed that conjectures and conspiracy theories seem to circulate more among educated program participants. “Maybe because the community members with lower levels of education mainly focus on bringing food to the table,” said Okkeu, completing his hypothesis.
However, Okkeu added that he did not find that attitude among the MSM community. “Well, the MSM community is an exception (in this case). I found that, in general, they are well-educated but also pretty compliant with the prevention protocol. Apart from the MSM, most of those who believed in COVID-19 conspiracies had higher education. This is just my observation, by the way.”
Okkeu shared more on program participants’ attitudes towards COVID-19. From his experience, the community of People Living with HIV/AIDS is relatively easy to reach and educate. People living with HIV/AIDSs are used to getting health-related education regularly so they usually understand health risks better than the general public. As a result they showed a positive attitude towards adopting the prevention protocols.
Okkeu also told us that he found mask-wearing is common practice among his program participants. While handwashing and physical distancing seemed to be more difficult to adopt for most marginalized members of the community. “Many of the transgenders and female sex workers live in boarding houses. They have shared bedrooms and bathrooms so keeping safe distance from each other is bound to be hard, “said Okkeu.
Arin, a transgender program participant who also joined our meeting that day added, “Our boarding house is a bit crowded, so it is difficult to maintain the distance. As for handwashing, it (the difficulty) is more because we are not used to it; it was never a habit since we were kids.” We asked whether COVID-19 prevention education by LeaN On caseworker was useful for his community and Arin explained that she has seen some changes in their compliance with the health protocols among her peers although in different levels of consistency.
In addition to Arin’s explanation, Okkeu highlighted the importance of role models to trigger behavior change. “When some of the community members wear masks the others would feel embarrassed if they don’t put one on,” he said. Furthermore, testimonies from COVID-19 survivors who have won a battle against severe symptoms and serious health impacts are also much-needed. Okkeu believed testimonies could help the caseworkers to convince participants on the existence and dangers of COVID-19, so they could carry out the prevention education more effectively.
Okkeu and Adit had similar conclusions on participants’ attitudes and behavior changes. Additionally, Adit shared his concern about how most community members mainly practiced prevention protocol out of fear of sanction enforced by authorized officers, “Lots of people wear their masks under their chin. When they see the civil service police unit approaching, they will put it on. That means they don’t comprehend the risks… To them, the police are scarier than the virus itself,” he said, half chuckling.
Apart from the fear-of-sanction-based prevention practices, according to Adit and Okkeu, two other things that have also become the main challenges in carrying out prevention education are the arguments related to religious beliefs and economic reasons. “If the participants have said something along ‘let’s just leave it to God’, that would not be easy,” Adit said. Therefore, he emphasized the importance of coordination between the COVID-19 Task Force and religious leaders so that they can join hands in delivering effective risk communication.
In regards to the economic reasons, Okkeu explained, “It is difficult to be so explicit (about the prevention protocol), if it (the reason) is related to the economic reason.” According to him, many marginalized members of society are put in the position of having to choose between not having enough cash to afford meals and risking exposure to COVID-19. When program participants used “economic needs” as the main obstacle to implementing prevention protocol, the caseworker could not offer much of a solution. Especially, when the participants lack access to social protection.
Economic Impacts and the Irony of Social Protection
Okkeu and Adit also shared a couple of stories about the struggles experienced by some marginalized community members in seeking additional income to survive the pandemic. “Even those who initially were not sex workers finally decided to put themselves online after having their wages cut due to the crisis, or worse, getting laid off (by the employers). I know a couple of persons who do so,” said Adit. Okkeu confirmed this phenomenon. He believed that the difficulty in accessing social assistance as an alternative source of income amidst economic downturns is one of the reasons many vulnerable community members are forced to take risky opportunities and ignore the COVID-19 prevention protocols.
Based on his observations in regards to the difficulty in accessing social assistance, Okkeu argued that the gap between the social assistance recipient candidates’ data collected in the regions and the reference data used by the central government was one of the main factors. “The decision was based on existing data referred by the central government. If I’m not mistaken, they refer to the 2018 Central Bureau of Statistics (BPS) data for the poor category. Meanwhile, there are many “newly poor” people as a result of this pandemic. So obviously, it’s not accurate to refer to 2018 data,” said Okkeu.
In addition to the data collection, the domicile issue is another factor that often hinders the efforts of marginalized community members to secure their right to social protection. Arin, for example, could not register for the social assistance program in Bandung City even though he is actually a West Java resident who comes from a different city. In response to this issue, Okkeu expressed his opinion, “In an emergency situation like this, it doesn’t make sense if you have to go back to your hometown just to collect the food staple assistance. It requires some amount of transport cost to travel back home. Not to mention the risk of being exposed to the virus on the way.”
Following Okkeu’s opinion, Arin shared her experiences related to social assistance “One day, someone came asking for our data, including identity card (KTP) and family card (KK). Apparently, all the data they took was for a lunch box. Of course, I was still grateful. But I actually hoped it was going to be a (package of) staple,” Arin told the story in laughter. On another occasion, Arin received a leaflet from the local leader that informed the availability of food staples for the residents in need. Of course, Arin rushed to the mentioned location. But once again, she had to swallow her disappointment because the staple food turned out to be a package of instant noodles that could only be obtained by paying 20 thousand rupiahs.
Concerned about the condition of the participants who had difficulties in fulfilling their daily needs, Okkeu, Adit, and some other caseworkers with the support of Female Plus tried to source assistance from a number of institutions, including governmental, privates, and individuals. Thanks to the good relationships that have been long established between Female Plus and some institutions, as well as the caseworkers who persistently approached the potential individual and community-based donors, a number of donations in the form of basic necessities and cash had been collected and distributed to some of the program participants who were most in need.
At the end of the meeting, Okkeu expressed his gratitude for the opportunity to join the LeaN On program as a caseworker. “I learned a lot from my experience as a caseworker. I get to understand the problems on the ground, the issues surrounding behavior change, the procedures to access social protection, as well as to get connected with the private and individual donors,” he said. However, his biggest hope is that the marginalized members of society will not have to face various obstacles to access their right to social protection.
“All of those who contracted severe COVID-19 and are economically affected should be automatically listed for social protection. It would be nice if we could put aside the data collection and domicile issues in an emergency situation like this,” said Okkeu. He further described the situation facing marginalized groups during this pandemic in a parable, “As we say in Sundanese: dikungkung teu diawur, dicangcang teu diparaban,” which means locked up but not given a living, tied up but not given food.
Arin, who represented her peers in the transgender community expressed her hope, “I hope the government does not see gender in providing social protection because we are all human beings. We can and are willing to stay at home if there is a guarantee or assistance that could help us survive.”
LeaN On by INVEST DM is an inclusive RCCE program that aims to provide access to risk information and education on COVID-19 prevention, including information on available social protection services, for 165 thousand people with disabilities and other vulnerable groups in seven regions in Indonesia. This program is supported by the American people through USAID, and in partnership with BNPB, Kemenkumham, MAJu (The Asia Foundation) and a consortium of partners consisting of Mercy Corps Indonesia, ASB, ThisAble, Human Initiative and AtmaConnect.
The views and opinions of authors expressed herein do not necessarily state or reflect those of the U.S. Government or the USAID.