This story is the second in our three-part environmental justice series “Peril in East Africa.” Read the first part here.
South Sudan, the world’s youngest country, is experiencing record flooding, one of the worst economic disasters in the world, and relentless trauma from a civil war that never really ended.
In the aftermath of 2018’s unstable peace deals, almost 70% of the country’s population needs humanitarian aid. Already facing extreme food insecurity, the nation has the world’s lowest coping capacity to manage climate disasters.
But the most concerning issue is that about 1 in 6 people in the nation have a disability, making them more likely to die than those without; yet, they are ‘lost and excluded’ from rescue operations, given that census rates of disability in the country are only 5% despite evidence that points otherwise. Considering South Sudan’s post-conflict environment and critical lack of healthcare access, the proportion of those with disabilities could likely be even higher than the estimated amount.
Globally, 84% of people with disabilities lack a personal preparedness plan for disasters, according to the United Nations, which makes them a very vulnerable group, especially in a contentious region like South Sudan.
Angeth Nhial is a lady in her mid-fifties, one of a few thousand residents still living in Panpandiar village. Here in Jonglei State — located at the heart of an immense network of Nile tributaries, swamps, and floodplains, compounded by a clay and silt landscape not conducive to drainage —floods are a recurring issue.
Nhial’s last-born son Majok Garang has severe congenital cognitive impairments but was never properly diagnosed. Local doctors insisted that he was fine, even though the 12-year-old was unable to feed himself as a toddler or learn how to speak.
“I always had that frustration when doctors say there’s no sickness,” his mother recalls. “I just surrender everything to God, to see if God can help me.”
To reach Jonglei in central South Sudan, one must bypass Al-Sudd, a massive 250-mile-long swamp that drains into the White Nile. More than four decades of fighting has left the state’s capital, Bor — an epicenter of the nation’s ethnically-driven civil wars — in poor shape. Communities rely on fishing, farming, and livestock herding as their main sources of livelihood; access to healthcare facilities, social services, and infrastructure remains extremely limited. For instance, the tarmac road snaking from Bor to Panpandiar village wasn’t built until 2023.
At the height of the 2013 civil war, Nhial had tried her best to bring her son to a doctor, crossing by boat to the neighboring Lake District. But upon reaching the town of Guolyar, where she desperately hoped she could reach the right doctor, no one was on call at the clinic.
Nhial’s husband was a fighter for the Sudan People’s Liberation Movement and passed away in 2023 after a decade-long struggle to recover from combat injuries. At present, Nhial toils over a small plot of sorghum and groundnuts to make ends meet. One of her sons has been seeking employment in the South Sudanese capital Juba but without much success. “He sends money when he can,” she says, seated under a mango tree with Garang by her side, as he always is. “Otherwise, I just try to cope.”
“I always had that frustration when doctors say there’s no sickness. I just surrender everything to God, to see if God can help me.”
Garang’s disabilities mean that Nhial’s days are dedicated to caring for him. He has difficulty swallowing and can consume only liquid foods such as milk or bean broth. Even meat has to be pounded very thin for him to be able to consume it. During the widespread floods last year, most villagers from Panpandiar evacuated to the United Nations Refugee Agency-hosted Mangalla Internally Displaced Person camp, but Nhial stayed even though the floodwaters had reached the level of her chest in her home.
“I stayed because of my son,” she explains. “Moving anywhere else, I worry about bullying, the child running away.”
People like Nhial are amongst the most vulnerable in a country like South Sudan, where nearly everyone needs humanitarian assistance, according to Ferenc Dávid Markó, a research consultant at the World Bank.
Given South Sudan’s dire economic woes — civil servants’ salaries have been withheld for nearly a year — it’s difficult to imagine the nation suddenly taking care of its people, Markó says. “The idea that the world is becoming a better place, and there are less and less needs in terms of humanitarian aid, is over.”
Jonglei is a particularly fascinating place, the researcher says, given how it is situated at the nexus of catastrophic climate change and a lot of violence. In 2022, more than 400,000 people in the state were affected as a result of the floods. “Fighting between ethnic groups is intensifying because there are so few resources. Everyone needs cattle, but they have been killed by floods. Without cattle, there’s no chance for a dignified life, or marriage prospects. The peace programs on the ground are just bandaids to a much bigger problem.”
“Farmers will tell you, ‘What we’re doing this season is not working,’” Markó says. “People are lost. They don’t know who to trust — not their governments — and don’t feel that NGOs are really accountable. Maybe to their donors, but not the people. They aren’t listening to their needs.”
Edmund Yakani Berizilious, executive director of the Juba-based human rights group Community Empowerment for Progress Organization, says that disability rights have been sorely overlooked, particularly in Jonglei.
“In a post-conflict place, the ranking of priorities is much more focused on political transitions,” he explains. “Civilians are forgotten, and people with disabilities are the most forgotten.”
As the political focus remains on macro-efforts like peacebuilding, other crucial community development efforts in healthcare, education, and social development are left behind.
Disability rights simply are not a focus of the overwhelming majority of humanitarian organizations, Berizilious says. “There aren’t enough allies on this front.”
But in 2022, his organization and the global nonprofit Light for the World began collaborating on ways to amplify and visualize the needs of persons with disabilities, culminating in the South Sudanese government signing the United Nations Convention on the Rights of Persons with Disabilities in February 2023.
“In a post-conflict place, the ranking of priorities is much more focused on political transitions. Civilians are forgotten, and people with disabilities are the most forgotten.”
Nhial first heard about Light for the World from her neighbors two years ago but did not personally benefit from their assistance until this year. Last July, she attended a workshop by their 16-member team in Jonglei, who conduct weekly site visits to over 800 households in the region, where she learned strategies on planning clear and accessible routes to higher ground, considering potential road closures, and preparing emergency kits to carry during evacuations.
South Sudan may hold the title for another adverse problem: the first example of a mass population permanently displaced by climate change. Indications of increases in precipitation plus more frequent positive phases of the Indian Ocean Dipole — a phenomenon similar to El Niño in the Pacific Ocean — caused record rainfall in 2020 and 2023. Here, floods take a long time to recede, meaning that even small increases in positive phases and rainfall could lead to significant and permanent expansion of the Sudd wetlands.
At present South Sudan lacks even the capacity to communicate forecasts of record flooding — the worst in 60 years — to the civilians residing in harm’s way, says Markó. When he spoke to his South Sudanese friends earlier this year — people with smartphones and access to the internet — virtually no one seemed to know about the devastating flooding that could last through December.
Daniel Chol Kuei, a civil administrator of Bor County and chairperson of the Disability Mainstreaming Committee, notes that flooding has caused dire issues in Bor for years. “2020 was the most severe [so far],” he says during an interview at a local restaurant in Bor. “We were even using canoes in town.”
“Those living along the River Nile are the most vulnerable,” Kuei continues. “When someone has been displaced, they’re lacking a lot of things. The infrastructure of the government, schools, health facilities — it’s all disrupted.”
He noted that pregnant women, young children, and disabled people are rendered the most vulnerable by the floods. “Although they may come to the highlands, they’re still lacking social and health services.”
Recognizing this gap, Light for the World started offering flood evacuation training sessions last year specifically geared toward households with persons with disabilities. 40 participants across Bor were trained in 2023 on climate resilience, with another 35 trained in September 2024.
The workshop in Panpandiar was the first time Nhial had ever convened with other caretakers from her village. Speaking freely with others in similar situations took a weight off her shoulders, she says: “It felt like someone was looking out for us.”
Light for the World also provided her with $150 in cash assistance, which Nhial used to buy food for the household and set up a stall to turn a small profit, which she used to purchase medicine for Garang.
Light for the World CEO Marion Lieser says the organization was established in 1988 with a mandate on improving eye care in sub-Saharan Africa. “Sight is key to unlocking a person’s full potential,” she says during a phone call. “We’re committed to having people with disabilities fully exercising their right to education, work, and healthcare.”
In 2006, they began operations in South Sudan, focusing on eye health and inclusive education.
“South Sudan had big needs, and these aspects were not a priority for the government,” says Sophia Mohammed, the county director. The over-saturated nonprofit scene fixates on humanitarian responses, yet disability inclusion remains overlooked. For instance, the United Nations High Commissioner for Refugees, while emphasizing the inclusion of people with disabilities in their programs supporting civilians suffering from the aftermath of the 2013 crisis, has fallen short.
“They’d say, ‘We don’t have it because we need an expert, and also it is expensive.’ We had to show them that inclusion doesn’t need very expensive experts, but that we need to pilot this within the camp, including both persons with disabilities and their caretakers, to make sure everyone can access the services they are providing,” she says.
There are few pockets of time when life in Panpandiar doesn’t feel so difficult. Last September, the late afternoon sunlight gently streamed through the tree branches in the hiatus between cloudbursts. Nhial puts her arm over Garang’s shoulder as he sits calmly beside her.
Looking over the small plot where she has been harvesting groundnuts, Nhial says that she’s not sure how bad the flooding will be for the rest of this year.
“I’m not really worried, because the flooding has become a routine thing,” she says. There’s a pause as she surveys the simple thatched huts of Panpandiar. “But if I can get some [non-food items such as plastic tarps], I will be ready to move to higher ground.”
