Africa

‘Difficult choices’: The particular vulnerability of children with disabilities in South Sudan

Amid ‘the world’s invisible crisis’, children with disabilities, and the people who love them, face particularly severe challenges

A wheelchair is unloaded from a truck transporting people who are fleeing Sudan's war. Photograph: Sally Hayden

Sally Hayden's face
Sally Hayden in Renk, South Sudan
Mon May 13 2024 - 05:00

Getting two young children with disabilities away from a war zone wasn’t easy, says Juaia James. “When the war erupted in Sudan I was afraid because I was responsible for them,” she said.

The 24-year-old has been living in a refugee camp in Renk, northeast South Sudan, since last November. She travelled there alone with her children: they got lucky after a truck driver took pity on them, she said, and offered them transport for free. She held one child in her arms, while another moved around behind her. Of the two with disabilities, “one can’t walk, another has a problem with his spine,” she explained.

James hasn’t seen her husband since last July. “My husband left me because of the situation with the children, he could not handle the responsibility,” she said.

Sudan’s war began in April 2023, with clashes between the Sudanese army, led by Abdel Fattah al-Burhan, and the Rapid Support Forces paramilitary group, led by Mohamed Hamdan Dagalo, known as Hemedti. A year of fighting has triggered what the UN says is now the world’s largest displacement crisis.

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The full death toll is unknown, though US special envoy for Sudan Tom Perriello told a US senate committee hearing this month that it could be as high as 150,000.

Julia James (24) said her husband left her after the war broke out. Photograph: Sally Hayden

Over the past year, Perriello said, “the people of Sudan have suffered death, crimes against humanity, sexual violence and starvation as a weapon of war, and ethnic cleansing”. He said 25 million people are in need of basic food and medicine, with 4.9 million of them on the verge of famine, “yet the world has treated Sudan as an invisible crisis, rarely covered in the world press”.

Among those who find it particularly difficult to flee the war are the elderly and people with disabilities.

Muzamil Sebi, director of advocacy at Save the Children in South Sudan, said the vulnerability of people with disabilities, during times of conflict, is more severe “for a number of factors”.

Support networks and services are disrupted, leaving people more isolated and vulnerable, he said. They can lose access to specialised medical care, assistance devices or therapies, and “because of this situation, they become more dependent on caregivers for assistance and protection during times of conflict. So if caregivers are unable to meet their needs due to the stress of war, then eventually such kind of disabled people cannot be really helped.”

For children with disabilities, a lack of access to specialised education can make it much more difficult to catch up later.

“The realities of conflict often force individuals with disabilities and their families to make difficult choices for sure,” said Sebi.

“For example, the families will have to decide whether to stay in their homes and risk exposure to violence and danger or flee to safer areas with limited accessibility and support for individuals with disabilities.”

James said her family was stopped three times at checkpoints manned by fighters as they left Sudan. “They were just checking, there was no fighting. They were taking things from the people like smartphones, if they find money they take it,” she said.

In South Sudan, she received cash support from the Norwegian Refugee Council humanitarian organisation, and other provisions from Save the Children, including blankets, jerrycans, soap, clothes and some food.

She is hoping to be reunited with her mother, who she believes is a three-day, 320km boat journey away in the city of Malakal, but she is unable to travel there alone with her children. “I need someone to help me.”

Elizabeth Atong Nyker (70), now cares for her granddaughter after the child's mother was killed by a snakebite. Photograph: Sally Hayden

South Sudan has an “open-door” policy to people fleeing the war in Sudan, no matter which country they originally come from. More than 663,000 people from 19 different nationalities have crossed the border since April 2023, according to UN figures. More than 340,000 of them were below the ages of 18. There are slightly more females than males – with one recent arrival telling The Irish Times that it is more difficult for men to get away, as fighters are more likely to target and kill them along the journey.

Fewer than 20,000 of those who have crossed into South Sudan are aged 60 or over, underlining the challenges that older people face when it comes to fleeing war.

[ South Sudan’s refugee crisis: ‘We’re missing our country, our place, our Ramadan’ ]

One was 70-year-old Elizabeth Atong Nyker, who escaped Sudan with her 80-year-old husband last July. They were caring for a granddaughter – her mother, their daughter, died of a snakebite along the journey. “We cannot manage to stay here,” Nyker said about the refugee camp in which they now live – though they also have no way to leave, and nowhere else to go. “The child needs milk we cannot buy. Something to feed yourself is not available so we’re struggling.”

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