Rare disease: Two residents live in an area of Sitanala reserved for people with the most acute stage of leprosy. — Photo by Patrick Tombola
The small road to Sitanala is like many others in the outer ring of West Jakarta: narrow, half-paved and pocked with potholes.
Yet this modest road connects one of the largest leprosy colonies of western Java to the rest of the world. Here, more than 600 people affected by the disease live with their families and close relatives in an area no larger than a few square kilometers.
It does not take long to notice that the hands offering change in local shops have scars running deep. Arms have lesions and different pigmentation, while tall wooden stools help a delicate balancing act, as many in the neighborhood lack a lower limb or two.
But none of this shocks anyone walking these streets, as the few that venture to Sitanala are all too well aware of the plight of its residents.
Even though families here are clearly on low incomes, what is surprising about Sitanala is the unexpected number of small businesses thriving just behind the walls of people's homes.
As the backrooms of semidetached single-story houses become industrial kitchens for the production of local krupuk (Indonesian crackers) or the manufacturing of artificial plastic limbs powered by mechanical levers, increasing numbers of residents are helping create a vibrant local economy.
Many of these businesses are employing people affected by leprosy, who would have a hard time finding employment in the regular labor market.
Although many here try to build a business or dream of expanding their existing one, nobody denies the significant hurdle that the stigma of leprosy represents.
"I cannot let any of my wholesale buyers know where I live. Otherwise they would stop buying my products," says Joseph (not his real name). He explains that a long-term customer, after learning of his medical condition, had refused his merchandise for fear the disease would spread through the food.
But as pointed out by Dr. Sandri from Transformasi Lepra, a non-profit organization concerned with eradicating leprosy in Indonesia, people's fear of catching the disease is based on ignorance of the medical facts of the condition.
"Leprosy cannot be contracted through food or only by touch," she says. "It's fear and stigma that make people scared."
Treatment with multidrug therapy has not only proved to end infectiousness among sufferers, but has also been highly effective in reducing the number of people developing severer forms of leprosy. The likelihood of transmission is further reduced given that, as shown by World Health Organization (WHO) research, more than 95 percent of the world's population is naturally immune to the leprosy bacteria; the remaining 5 percent needs close and daily interaction with people affected to contract the disease.
To this day experts still cannot explain precisely how the bacteria are transmitted. While malnutrition and prolonged exposure are likely to play a role, the myth of contagion by physical touch has been permanently debunked; transmission is believed to be via a respiratory route.
Yet these medical breakthroughs have done little to tear down the stigma associated with leprosy. For many in Sitanala, the stigma is the single most difficult hurdle to overcome.
Moving on: Sitanala resident Arif shows one of his latest flip-flop designs, which include a love-heart theme and soccer theme. — Photo by Patrick Tombola
"I had several jobs after university but lost all of them because of my leprosy, so now I work for myself," says Arif, who has recently decided to sell homemade flip-flops of various shapes and designs at the local market.
"When I went for a job at the bank they conducted a health check and realized I had leprosy so they didn't give me the job," he adds.
Many other residents share similar experiences. Most believe that compulsory health checks are just a part of systematic discrimination in the workplace.
The stigma attached to leprosy not only affects the sufferers themselves but also extends to most of their close family members. Nisa, a primary school teacher who has a parent affected by leprosy, says it took her years to tell even her closest friends that she was living in Sitanala, known in the area as a leprosy colony.
"It was a little huge secret," she says, her tone conveying the pain of her youth. "At school I could never talk about home for fear of being stigmatized. It was only in my 20s that I began to reconcile my double identity."
Nisa's fluent English is a result of her university studies, made possible only by the relative economic success of her family's small business. Other young people in the Sitanala community have also completed higher education, by no means a minor feat in a country where only a tiny percentage of the population can make that claim.
Arif, who has just completed a degree in IT at the University of Indonesia, believes that more business will bring more money, which will lead to greater access to education for Sitanala residents. This, he believes, will create a positive spiral that will inevitably help the community as a whole.
Despite having geometrically ordered streets instead of the more traditional small and winding alleyways, Sitanala at first resembles any other kampung in Indonesia.
Corner shops sell the usual varieties of packaged instant noodles and sodas while the smell of deep-fried chicken legs and banana slices inundates the street from makeshift windows carved in stone walls.
But an unusual makeshift fence made of steel and wood surrounds the colony, dividing it from the neighboring kampung.
"Most locals are afraid of people with leprosy and don't like having the colony so close," explains Herman, a long-time resident of the colony who is affected by leprosy. "They are all from the same village and see us not only as strangers but also dangerous."
What few realize is that the common fate of Sitanala's residents may be the very reason behind its social cohesion and vibrant economic life.
"We are like one big family," says Herman. "We all share the disease and there is no reason for conflict. We are all united and help each other."
People living here come from all corners of the Indonesian archipelago, most having have fled discrimination and stigma in their local villages.
Whether from Sumatra, Flores, Java or Papua, most residents describe their similar experiences not only as a common denominator that far outweighs their different origins but also as a source of social capital that greatly enhances their business activities.
Standing tall: Sitanala resident Ali produces artificial limbs for people around Indonesia and abroad. — Photo by Patrick Tombola
Sitanala resident Andika owned a business farming seaweed in the West Javanese area of Ujung Kulon until a powerful storm a couple of months ago destroyed his business.
He employed several people from the colony, thanks to whose contacts he was able to distribute his products throughout different parts of Java.
As he waits for the new seaweed season to begin, Andika has established a shoe business with the help of others in the colony.
Similarly, Ali used the contacts obtained through different organizations of people affected by leprosy to sell the artificial limbs his business produces throughout Indonesia and overseas. Although completely self-taught, his craftsmanship now helps children from as far away as the slums in India to elderly women in Papua.
Leprosy as a physical condition may well have rendered many disabled, but its label as "God's curse" and the social stigma attached to it often have even more devastating and long-lasting effects on both individuals and communities.
Yet walking out of Andika's artificial limb workshop onto the streets of Sitanala, it is impossible not to have a sense that human resourcefulness and motivation can ultimately transform what many perceive as a misfortune into an opportunity for economic and personal growth.
