A photo exhibition in Indonesia seeks to change perceptions about leprosy.
|"Weaving Hope": The organizers were particularly keen to reach out to the younger generation.|
Indonesia annually reports the third largest number of cases of leprosy in the world, after India and Brazil. The disease remains feared by the public and even by some health officials. This fear, which is based on a lack of knowledge and understanding of leprosy, results in the stigma and social discrimination that people affected by the disease face.
A diagnosis of leprosy can cause problems at home, at the workplace or in school. It puts a strain on a marriage and makes it hard to get or retain a job or stay in class. It can lead to marginalization and social exclusion.
Dissemination of accurate information about leprosy is thus vital for reducing the stigma. As an NGO working to uphold the dignity and rights of people affected by leprosy, PerMaTa has held workshops, distributed leaflets and taken part in World Leprosy Day activities to promote greater awareness of leprosy. Last November we decided to try something different and hosted a photo exhibition.
"Merajut Harapan" (Weaving Hope) was held at a shopping mall called Royal Plaza in Surabaya, East Java. It featured photos of people affected by leprosy going about their daily lives in the community. The images were taken by Budi Yuwono, one of our members, who came up with the idea.
Most of the people in the photos had been diagnosed and treated in a timely manner and do not suffer from disability. Our objective was to trigger a shift in public perceptions so that people no longer become scared at the very mention of the disease or automatically associate it with disability or disfigurement.
One of the reasons for choosing Royal Plaza as the venue is that people of all ages and from all walks of life go there every day, including students who hang out there after school. We felt it would be a good place to share information with them and get them to start thinking differently about the disease. Given that students represent the next generation, we felt it was especially important to target them to help shape future perceptions of leprosy.
Captions accompanied the photos and we also distributed leaflets with detailed information about leprosy. In addition, PerMaTa members were on hand to answer questions, as was a representative of the provincial health office. The many questions we received indicated the concerns people still have about the disease.
Encouraged by the level of interest, including positive media coverage, we organized a second exhibition at the Royal Plaza in February. This time, we kept count of all the people who stopped by, logging more 3,000 visitors over a five-day period.
We also left it to visitors to pick up a leaflet if they wanted further information, rather than giving them to everyone who came, after we noticed how many leaflets end up being discarded the first time. Based on our calculations, some 14 percent of visitors picked up a leaflet.
Overall, we were very pleased with how the two exhibitions went. Looking at the expressions on the faces of visitors as they studied the photos, it was apparent that this was a better way to engage with the public and share information about leprosy than through a brochure alone. As the saying goes, a picture is worth a thousand words.
The exhibitions conveyed the message that with early diagnosis and treatment, the disability that people associate with leprosy can be avoided. Moreover, by showing that people who have been treated and cured are perfectly able to live and work in society, we are dispelling the notion that they should be "exiled". We hope to organize more exhibitions in other parts of Indonesia in future.
PerMaTa is an organization of people affected by leprosy in Indonesia. It marked its sixth anniversary earlier this year.