Leprosy patients are often ostracised
JUBA, – A once bustling community of several thousand on the outskirts of South Sudan’s capital, Juba, has been replaced by groups of people huddled under trees, surrounded by bundles piled high and the rubble that was their homes.
Luri Rokwe, a community of people with leprosy (PWL), was set up in 1948 by Sudan’s then Anglo-Egyptian rulers, but in January the PWL and generations of children who were born and raised here saw their houses demolished as part of a government programme which will push three-quarters of the population off this land.
“It has been decided by the government, because Juba is going to be a city and not a village,” said nurse Joseph Wani, who has run this community and treated others like himself with leprosy for years.
The government has allocated land to around 220 of the 290 PWL, but Wani says at least another 750 plots are needed for their children; hundreds of people are destitute.
“Up to today, there are still people waiting, there are still people sleeping outside,” and now the rains have come, he said.
The boy scouts are rebuilding houses for 47 people too affected by leprosy to rebuild their homes. But so far only two are built and there are only 15 temporary tents.
“I’m now sleeping out in the open and I’m really suffering, but at least I have a plot. It is the others who don’t that really pains me,” said PWL Thomas Wedaya, who arrived here in the 1950s.
Alkaya Aligo, undersecretary at the Ministry of Housing and Planning, accepted that the distribution of plots was “very slow” but explained that problems had been caused by healthy PWL offspring illegally grabbing land.
Juba is one of Africa’s fastest-growing cities and extra stress is being put on it by an influx of hundreds of thousands of people who fled Sudan and other countries and now eye Juba as the best place to settle for jobs.
For lepers like Asunta Juan, who was dropped off here as a small girl by her parents and has no identification papers to register for a plot, the future outside of this safe haven seems bleak.
“I grew up here, I did everything in my life here,” she says.
“We saw the grader come and destroy the houses and we don’t know where they will take us. The house I lived in was one that was built for me. Now I don’t know what to do… We need something to cover ourselves for the rains… To get our land back, we need money. Some people have already got their land back, but we don’t have the money to buy it back.”
“Robbed”
In 2005, the southern guerilla-movement-turned-national-army returned from 22 years in the bush and set up their barracks opposite Lori Rokwe, using land that this community had used to grow their own food.
The government says other areas including a lake which PWL used for fishing belongs to other ethnic groups who have returned to the capital in peacetime.
While cultivation land disappeared, government handouts and regular donations from aid agencies dropped after the peace deal and dried up completely in 2009.
“The government used to give us food. Now they don’t and no one is here to stop our suffering. The land for growing food was robbed from us. Now there’s a lack of food, lack of clothes, lack of blankets,” said Wedaya.
Pastor Nasona, whose parents arrived here in 1955, said many who had lived here for years but lacked the papers to claim their rights, were moving out. “Some of them have already gone because of the difficulties,” he said.
Meanwhile, new faces have appeared on what is now prime real estate.
“Some people claim the area of their forefathers before the leper people could be here. They come in and demand that some of the land be given to them, so it’s new people that are getting plots to stay here and people that come from the neighbouring villages,” Wedaya said.
A handful of Christian aid agencies still try to support this community.
“They have nothing to rebuild with, they have no money and no way to grow vegetables because they don’t have land,” said veteran aid worker Lori Bryan.
Poor health
“So you already have very emaciated people – it’s very difficult for them to get water – that are now going to become more diseased, more frail and thin, which leads to more health complications and possible death,” she warned.
James Wani, state coordinator for leprosy and tuberculosis at Juba Teaching Hospital, fears the community could be further weakened by illnesses caused by poor shelter and sanitation such as malaria and respiratory infections.
He said there were 1,437 lepers registered in Central Equatoria State last year for treatment, out of around 10,000 nationwide.
Wani said people are drawn here from the other nine states for treatment and support: “People don’t know that leprosy is an infectious disease that can be treated. They only know that leprosy is a curse.”
He said during awareness campaigns they often come out and can be cured in 6-18 months depending on the severity of the disease and their medication.
He feared that other PWLs who have yet to register for treatment will be harder to reach if they cannot stay at Luri Rokwe. “Right now they have 220 lepers, who have documents, what about the rest? That is what we are talking about.”
“Since 2009, nothing has happened to us here. Nobody has helped us -only for the treatment of other diseases but not leprosy,” said community leader Joseph Wani.
He said accidents among lepers were common, especially while cooking and carrying out duties as skin has deadened and they do not feel the pain of fire or sharp instruments.
Pastor Nasona fears that without help, many vulnerable people could be turned onto the streets of a city that has outgrown them. “There are those who have children who can help, but there are those who are just without and sometimes they can venture into the town asking for help – they become beggars.”
hm/cb source www.irinnews.org
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