Written by Marissa Rasgado, undergraduate student at DePaul University and participant in the Institute for Public Health Summer Research Program
Embarking to Uganda to research sources of stigma that discourage female sex workers and their customers from accessing HIV prevention and care, I was unaware how unimaginable this experience would be.
During our first day of research, we conducted an exploratory visit at Idudi–a truck stop along the TransAfrica Highway where truck drivers frequently come for sex. As we exited the cramped matatus (African minibus), stepping over people and stowing away the extra tatty seating, I was welcomed by the rush of people selling fruit, meat-on-a-stick, beverages, and chapatis. We bypassed the vendors and were greeted by a coordinator of the sex trade in Idudi. She took us to a bar and sat us around a table. She unraveled details about the industry and waited for the sun to set so we could see for ourselves how the business took place. We found ourselves in a low-ceiling pub with dim colored lighting. Later, adult men entered the scene, they ordered just a drink but were scoping around for something more. They gathered around the pool table, testing their skill at the game. Young girls wore dresses with long slits and tight clothing. They danced provocatively, twerking and grinding on to men to get their attention. Some of the men slid around the pool table into the back where the lodges arranged a half circle with the female sex workers in the center of it, operating their business. The female sex worker spoke in Lusoga, Swahili, or English to accommodate migrant customers. They would charge 10,000 Ugandan shillings for short and 20,000 Ugandan shillings for long sessions. For unprotected sex, customers can bargain for 15,000 Ugandan shillings. What for me was a few lively couple of hours, for the woman who worked there, it was merely their work hours.
Through the interviews and participatory activities, the female sex workers (FSWs) and male customers (MCs) would tell us about their experiences and events responsible for making them feel stigmatized. These conversations allowed us to get a better understanding of their lives and the sources of stigma they felt, specifically on being HIV+. We learned that people who are HIV+ are discriminated and called terms such as “mulamba gutambula” meaning dead body walking, “housing” which translates into phone shell without a battery, or “embwa yamuluma” signifying bitten by a dog. What fuels stigma of HIV is misconceptions about the virus. Many believe those who are infected by HIV are highly contagious, that it is contracted through shaking hands or sharing a toilet seat. It is also seen as a death sentence, as said by an FSW at Idudi truck stop “people fear becoming HIV+, they think you are going to kill them.” It is also apparent that the stigma felt by the FSWs and MCs act as a barrier on each level of HIV care. On the prevention level, many are unaware of their greater risk contracting the disease due to being in this industry, as stated by an FSW at Idudi truck stop “I don’t see I’m at risk for HIV, everyone is at risk for HIV.” Also, MCs had misconceptions on unprotected sex leading to low condom usage. On the getting tested level, many feel discouraged disclosing their status because they fear the repercussions of being stigmatized as HIV+. These repercussions include being the subject of gossip in their communities, losing the respect of their peers and even losing their jobs or business. On the retention level, many fear getting discovered as HIV+ because of their need to take the anti-retroviral treatment every three months. Consequently, many will instead prefer to visit a clinic away from their own community. However, this often creates significant barriers on seeking care. The key to successful adherence depends on the capacity to overcome self-stigmatization and self-degradation. For example, one FSW at Idudi truck stop accepted her HIV status and claimed, “My HIV status doesn’t affect how I interact with others because I love myself and act freely. I believe in myself and love myself so much that I don’t care what other people say.” An additional key component for successful adherence is the support system that the FSW have to encourage them to get and sustain their treatment. The goal of discovering the sources of stigma of HIV+ persons, is to close the gaps in HIV prevention, HIV testing, case-finding, linkage, retention, and adherence to anti-retroviral therapy. Once this study is completed and has identified the sources of stigmatization, it will help to develop efficient and reliable strategies to promote HIV identification, treatment, retention and acceptance of the commonly marginalized group of FSWs and MCs.