AYEN CHOL AREM, 40, grew up in Panpandiar, a small village nestled a few hundred meters from the undulating banks of the White Nile in central South Sudan’s Kolnyang payam (sub-county). She has not had an easy life. Her husband, a fighter with the Sudan People’s Liberation Army, was killed during intercommunal conflicts in 2010, the year before South Sudan achieved independence from Sudan. She lived through the ensuing civil war that broke out, which claimed more than 400,000 lives in South Sudan between 2013 and 2018 –– a war that many experts say has never actually ended.

Since then, Arem has faced another type of hardship: seemingly relentless floodwaters seeping into her thatched hut. The state of Jonglei, where she lives, is one of the most flood-prone regions in South Sudan, the world’s youngest country, and one of the poorest. In the last five years alone, Arem has struggled through multiple devastating floods that have threatened her livelihood –– her family subsists on the groundnuts and maize she cultivates.

In South Sudan, it’s not uncommon to see multiple debilitating injuries in one household.

The floods in 2020 were particularly devastating. That year, the water reached chest level in the thatched mud hut where Arem sleeps with her six children, ages ranging from 2 to 25. Her family managed to relocate to higher ground, returning four months later, though some of the floodwaters did not fully recede even in the following dry season. Her home was again inundated in 2023. That year, she squatted with her children by the side of the road a few kilometers away, on a raised embankment, just out of reach of the flooding. “It was difficult even to find a plastic tarp to live under,” she says.

Last August, the region was again hit by record flooding. The floods impacted some 4 million people across the country and displaced an estimated 380,000. Arem and her children were among those who were forced out of their homes yet again.

These experiences would be harrowing under any circumstances, but like many in South Sudan, Arem’s family faces the added difficulties that come with disability. Arem’s eldest son, 25-year-old Juma Malek, contracted meningitis around his first birthday, leaving him with severe physical and cognitive impairments. Her 12-year-old daughter, Adut Malek, was born with a club foot, a condition that went untreated, leaving her with a heavy limp and reliance on a cane. Her son Dhieu Malek, 19, was caught up in a vicious fight last year that broke his left femur. Without money to access medical care, the bone was never properly set. He now walks slowly with a crutch, grimacing with each step.

“Dhieu was the one who helped evacuate Juma in a wheelbarrow when the floods are bad,” Arem says. “And now he’s like this.”

In South Sudan, it’s not uncommon to see multiple debilitating injuries in one household, says Daniel Anyang, a disability inclusion facilitator for the global health and disability rights nonprofit Light for the World. This puts families like Arem’s at higher risk during floods and other natural disasters. Yet, when it comes to climate-disaster response and recovery planning, people with disabilities are frequently left out the equation.

ACCORDING TO THE World Health Organization, at least one in six people in the world has a disability. By some estimates, half of the world’s population either lives with disability or cares for someone living with disability. People with disabilities are more likely to be “lost and excluded” from rescue operations, says Gertrude Fefoame, chair of the United Nations Committee on the Rights of Persons with Disabilities. They are also two to four times more likely to die in a natural disaster, according to the UN Office of Disaster Risk Reduction. Yet, 84 percent of people with disabilities lack a personal preparedness plan for disasters, with those in poorer countries facing the most risks.

Globally, “the attention to these problems that are important to half of the world’s population is not seen or discussed, not on [the humanitarian] agenda,” says Marion Lieser, CEO of Light for the World. “Their human rights are not seriously looked at.”

By some estimates, half of the world’s population either lives with disability or cares for someone living with disability.

South Sudan lacks recent disability data, but the proportion of people with disabilities here is likely higher than the global average, given challenges around healthcare access and the recent history of conflict in the region. A 2013 government policy report estimated that 21 percent of the country’s severely disabled population became disabled due to war or conflict. As the world warms, this especially vulnerable population is facing the rising threat of climate disasters like flooding.

Parts of South Sudan have long been prone to flooding, which is tied to water levels in upstream Lake Victoria, seasonal precipitation, and impermeable clay soils. But in recent years, the situation has worsened in places like Jonglei, where most residents are farmers, fishers, and livestock herders whose livelihoods are deeply tied to the environment.

“Farmers will tell you, ‘What we’re doing this season is not working,’” says Ferenc David Marko, a research consultant at the World Bank. The rainmakers across Jonglei who once predicted how the weather would be, and have long advised villagers on what crops to grow, are out of their depth. Soon, some experts say, parts of the country may become uninhabitable, fields permanently washed out and homes taken over by the expanding wetlands.

The South Sudanese government’s ability to respond to the colliding crises of disability and climate change is severely limited since the country has been on the brink of economic and political collapse for years. In February 2024, the situation was aggravated when a ruptured oil pipeline –– which facilitated two thirds of the nation’s oil exports –– devalued the South Sudanese pound at lightning speed. It also left the government with virtually no revenue stream: More than 90 percent of the country’s budget comes from oil exports. All government salaries were withheld for more than one year, beginning in November 2023, and most civil servants still aren’t being paid.

On top of that, one million people have entered South Sudan since April 2023, fleeing conflict in neighboring Sudan. The influx of people has further strained scarce resources in a country struggling with ongoing violent communal conflicts itself. Some 7.1 million of South Sudan’s 12 million people are currently suffering from “extreme and deadly” hunger, according to Oxfam.

“What we’re seeing now is the breakdown of the state as a consequence of the war,” Marko says. “It’s hard to imagine South Sudan suddenly becoming a service provider state that can take care of its people.”

Humanitarian aid groups that provide significant support to South Sudan are facing depleted resources, in part due to the tremendous recent need in other conflict zones, including Palestine, Lebanon, and Syria. Under President Trump’s January order freezing foreign aid, the situation could deteriorate further: The United States has been the largest provider of humanitarian aid to South Sudan since it gained independence.

These compounding factors mean that South Sudan has the world’s lowest level of coping capacity to manage climate disasters, says Light for the World’s Lieser, let alone capacity to support people with disabilities and their caretakers in navigating them.

“The hazard has been identified,” says Daniel Chol Kueis, a civil administrator of Bor County, which encompasses Panpandiar, and chairperson of the Disability Mainstreaming Committee, a governmental body. “But the problem is resources –– money and machinery. The government simply doesn’t have any.”

THAT’S WHERE LIGHT for the World is stepping in, tackling discrete on-the-ground challenges that people with disabilities face in Jonglei, including those stemming from climate disruption.

“As a rule of thumb, usually the smaller the NGO, the better the program, is given their flexibility,” says Marko. “If you have such a mess of a humanitarian crisis, and no one else is [supporting persons of disabilities], you need to address the most vulnerable of the vulnerable, in a place where almost everyone needs aid.”

Light for the World has been working in South Sudan for over a decade, and in Jonglei since 2021. Currently, 16 disability-inclusion facilitators work with 800 households across three payams, countering stigma against persons with disabilities, advocating for inclusive education and employment, and offering counseling.

“We try to give live examples that people with disabilities can contribute and talk,” Anyang tells me as we make our way from hut to hut, visiting the households he sees every week. Like all disability-inclusion facilitators with Light for the World, Anyang himself lives with a disability. Bullets shattered his tibia as he was caught in the crossfire between police and political protesters in Uganda back in 2009, and he has since channeled his own traumatic experiences to connect with the communities he works with.

Light for the World has partnered with the South Sudanese human rights nonprofit Community for Empowerment for Progress (CEPO) to amplify the need for inclusion and prioritize flooding as a serious issue facing people with disabilities. “When we found [by looking at humanitarian flooding responses] how people with disabilities are forgotten, and nobody cares for their health or well-being, Light for the World took that seriously,” Edmund Yakani Berizilious, CEPO’s executive director, says.

“Before this workshop, I’d never had the chance to discuss what we go through with other caretakers.”

Their first effort involved emergency communication. As Marko explains, the government simply doesn’t have the capacity to relay information about impending deadly climate events to civilians residing in harm’s way.

“Light for the World knows people on the ground don’t have access to information about weather,” says Lieser. “At least in our project areas, we share this information so people can be aware of the floods and know how to protect themselves during these events.” They do this with an eye to disability, posting visual information about impending floods and other threats with large type and images, in accessible locations, and offering in-person communication via sign-language. They also collaborate with non-governmental organizations, community service organizations, and the government to implement robust warning systems through avenues like radio broadcasts and conferences.

Planning and preparedness are equally important. Beginning last year, Light for the World started addressing this gap through emergency flood-evacuation trainings for people with disabilities, as well as their caretakers. Facilitators provide accessible information guides at the trainings, and organize support teams to disseminate vital communications in an emergency –– namely, to let people know when it’s time to leave. Anyang and other facilitators teach people how to identify safe places to evacuate to, usually on higher ground, and remind them to take emergency kits with food, water, and medications, plus any assistive devices. They also ensure that people with disabilities are registered with local authorities and humanitarian groups before crises hit. The trainings incorporate people with disabilities into the planning and decision-making processes — something that advocates say is essential but often neglected.

This inclusion work extends beyond the emergency preparedness trainings. Beginning in June 2024, for example, Anyang led a series of five disability-inclusion workshops in Panpandiar in which Arem and the other caretakers sat with chiefs, local leaders, and community women’s groups. The participants were carefully selected to not only forge a sense of solidarity for persons with disabilities but also open up channels of communication. The idea is that by connecting caretakers to their greater communities, including their leaders, the urgency of inclusion will permeate higher decision-making levels the next time extreme weather events invariably hit.

Arem says she found the emotional management aspect of the training particularly helpful. “Before this workshop, I’d never had the chance to discuss what we go through with other caretakers,” she says. “Because of the stigma, it’s something that we’ve learned to hide.” For instance, her brother does not understand why he should help care for Juma. “Why would I take care of a child who isn’t going to do anything for me in return?” he has asked Arem before.

“Sometimes I get so angry, but one of the things I learned is how to manage taking care of children with disabilities,” Arem tells me from beneath the shade of a mango tree in her yard, chickens pecking hopefully near a pile of freshly harvested groundnuts. “During that training, we learned how to control our tempers to care for them.”

Light for the World also does what it can to improve mobility and accessibility for people with disabilities. The group provides tricycles, wheelchairs, and canes for those in need, or when they don’t have the resources, connects people with other groups that can. That was the case for 33-year-old Mach Malony, who lives in a hut with his mother in Panpandiar and contracted polio as an infant when breastfeeding. He cannot walk, and shares that he previously got around primarily by crawling. But this past year, Light for the World connected him to the Red Cross to obtain the tricycle. Now Malony, who has participated in both disability-inclusion trainings and emergency-preparedness workshops, can pedal to Bor Town on the tarmac road when he needs to. The journey takes him about three hours.

Even with his tricycle, Malony will face unique challenges during inevitable, future floods. Though he now has information about the closest Internally Displaced Persons (IDP) camp –– 10 kilometers from his home –– should he need to evacuate, tricycles are difficult to use in flood waters or on muddy, unpaved roads. Besides, not all emergency displacement camps address accessibility needs. People with disabilities may find difficulty with quotidian tasks like using bathroom facilities, or may struggle to access aid distribution sites, which aren’t always located within the camps. Light for the World provides guides to IDP camp managers that include practical, implementable solutions, such as providing accessible latrines and washrooms, and food distribution systems that accommodate those with severe disabilities.

As Kueis points out, even under a best-case scenario, extreme weather events are most disruptive to those with disabilities. “When someone has been displaced, they’re lacking a lot of things. The infrastructure of the government, schools, health facilities –– it’s all disrupted. Disabled people are the most affected by the floods. Although they may come to the highlands, they’re still lacking social and health services.”

THOUGH THE SITUATION is particularly stark there, South Sudan is hardly the only country struggling to support people with disabilities during disasters. Despite a number of global agreements and resolutions that address the issue — including the United Nations Convention on the Rights of Persons with Disabilities, which was adopted back in 2006, and which South Sudan finally signed last year — progress has been slow. According to the UN, the percentage of people with disabilities integrated into community disaster-planning and decision-making efforts worldwide has remained stagnant since 2013, and disaster preparedness for people with disabilities actually deteriorated between 2013 and 2023.

Disability advocates have been fighting for changes in policy at both local and global levels. In the meantime, they work to fill gaps in government planning and services. For instance, in addition to its work in South Sudan, Light for the World has supported inclusive disaster-response efforts in Mozambique and facilitated inclusive climate-adaptation work in Burkina Faso, India, Mozambique, and Malawi. In the Philippines, a coalition of organizations led by people with disabilities created a five-day training-program manual on inclusive disaster risk-reduction planning for government employees. In the United States, the nonprofit Portlight Strategies has provided medical supplies and aid to people with disabilities following multiple hurricanes, and deployed teams of first responders with disabilities to places like Puerto Rico to support disability-inclusive disaster response.

Disaster preparedness for people with disabilities actually deteriorated between 2013 and 2023.

Back in South Sudan, Anyang thinks this type of on-the-ground work is paying off. He points to better communication between people with disabilities and their parents or other caretakers, and to the employment of people with disabilities at the local leadership level. “Now, there’s someone with a disability … working as a tax collector at the border with Central Equatoria, and a [member of Parliament], Malith Maguang, who represents people with disabilities,” he shares. Seeing his work translate to shifts in broader society is satisfying. “Over my three years here, you can see that there’s a lot of changes.”

Sophia Mohammed, Light for the World’s South Sudan country director, says there have been improvements with emergency preparedness, too: Training and workshop participants are having much smoother evacuations than before, with far fewer disturbances to their families.

LAST JULY, AREM received some foundational training in business management from Light for the World, along with $150 in seed money to open a small stall selling cowpeas, sugar, and a few soft drinks. She initially situated her stall along the main tarmac road in Panpandiar. Business started briskly, she says, but August’s inundation forced her to relocate the stall — a small structure constructed from metal sheets and sticks — next to her thatched hut, a few hundred meters off the road. This put her at a disadvantage: “Almost no customers find me here,” she says.

Soon after she moved the stall, she had to evacuate from the area entirely. But because three of her children now live with disabilities, it was not practical for them to go to the nearest IDP camp, located more than five miles away. Instead, they camped on higher ground by the side of the road, huddled underneath some tarps they found, until the waters receded and they could return home in November.

She has since reopened her stall, next to her home, but the threat of flooding is never far off. Each bout of heavy rain is capable of uprooting her family, and she knows it’s likely just a matter of time before they are displaced again. “The water keeps on coming, and there’s no real place for us to go,” she says. “How are we supposed to live?”