JUBA, South Sudan — It’s been more than five years since John Gatwang was abducted by South Sudan’s government soldiers. “If I had good legs, I don’t think I would have been captured,” he said.

Playfully smacking each of his prosthetic limbs with his cane, the 47-year-old mops beads of sweat from his forehead before lowering himself into a plastic chair in the civilian protection site — an internally displaced people’s camp run by the United Nations — in South Sudan’s capital, Juba. The former soldier lost both of his legs below the knees while fighting for independence from Sudan in 1990. It took 10 years before he was fitted with prosthetics and while he says they’ve changed his life, day-to-day living remains a challenge, especially in a fragile setting.

“We found that there was still some challenges among humanitarian workers — they are not always sure how to work with people with disabilities or how to communicate with people with disabilities.” — Kelly Thayer, emergency coordinator, Humanity & Inclusion

Before erupting into conflict in 2013, approximately 5 percent of South Sudan’s population was living with disabilities, as per a 2008 nationwide census. Five years of fighting, however, have devastated the country, killing almost 400,000 people, displacing millions, and tripling the number of people estimated to be living with disabilities to 15 percent, according to a 2017 study by Humanity & Inclusion — former Handicap International — and the U.N.’s International Organization for Migration.

Approximately 250,000 people living with disabilities are currently in displacement camps across the country, according to the World Health Organization and aid group Light for the World.

Many people, like Gatwang, say they feel forgotten.

Living in the U.N. protected camp in Juba since 2013, Gatwang has been struggling to care for himself. He has no work, and his direct family lives across the country in Bentiu, in Unity State, and the rest of his relatives have been killed. Walking long distances under the scorching sun to get food and water is painful on his prosthetics; he needs a tricycle to carry his provisions, which isn’t always accessible and can easily break down on the camp’s unpaved gravel roads.

Last year, Human Rights Watch called on the U.N. and aid organizations to do more in their response to accommodate the needs of people with disabilities.

“People with disabilities and older people are often left behind during attacks and find themselves at much greater risk of starvation or abuse,” said Shantha Rau Barriga, disability rights director at Human Rights Watch.

She said the problem is particularly acute in South Sudan, where decades of war have increased the number of people living with disabilities, and where armed forces on both sides target civilians with impunity. The organization documented numerous cases of elderly people and those with disabilities being shot, hacked to death or burned alive in their houses.

Challenging perceptions

Not only are people with disabilities being marginalized within their communities, negative perceptions persist among humanitarians as well.

The 2017 Humanity & Inclusion and IOM study found that aid workers had poor attitudes toward people with disabilities. Several of the service providers interviewed said they assumed the number of people wasn’t high enough to adapt services to cater to their needs, while one person said that equal access of people living with disabilities wasn’t a priority in their group’s projects.

“We found that there was still some challenges among humanitarian workers — they are not always sure how to work with people with disabilities or how to communicate with people with disabilities,” said Kelly Thayer, emergency coordinator for Humanity & Inclusion. “Disabilities aren’t mainstreamed.”

As one of the only organizations in the country focusing specifically on people living with disabilities, Humanity & Inclusion works in both development and emergency contexts, helping to foster a society that is more inclusive by training humanitarians on what they can do to be more comprehensive in their response.

Inclusive programming often isn’t on organizations’ radars, and those who do think about it don’t always have the proper knowledge or technical ability to implement it, said Thayer.

For example, structures assumed to be accessible often aren’t — a door that isn’t level with the floor, which automatically becomes inaccessible, or a latrine not wide enough to fit a wheelchair, or not equipped with ramps or handlebars.

South Sudan is yet to ratify the U.N. Convention on the Rights of Persons with Disabilities. According to initial research in the 2017 study, their needs aren’t prioritized in national plans, leaving them open to widespread discrimination and limiting their participation in community activities, which leads to less access to jobs and education.

The ministry of gender, child, and social welfare conducts occasional educational and vocational trainings for people with disabilities including journalism, photography, and drama courses. They also provide centers across the city where people can get their wheelchairs, bikes, canes, and prosthetics fixed.

The country’s economic crisis, however, has made it hard to purchase raw materials to repair people’s devices, let alone the ability to invest in new equipment. Less than $2,000 from the government budget is put toward initiatives for people with disabilities, said Rose Lisok Paulino, minister of gender, child, and social welfare in South Sudan. The money is not enough.

“Because of the stigma and cultural norms these people are not seen as important … but if they’re given the chance they can be good citizens and contribute. But they have to be given the chance,” she said.

10-15 percent of staff in her ministry are people living with disabilities, which is helping to reduce stigma and raise their profiles, Paulino added.

Living in the shadows

Nevertheless, the pervasive lack of visibility for people with disabilities in the country is one of the greatest challenges to better serving them, especially when it comes to collecting data. Each organization Devex spoke to said that scant availability of information was one of the biggest impediments to increasing awareness and creating more inclusive programming.

“All projects are evidence-based, so data is very important; you can’t really address the needs without the information,” said Wani Gabriel, acting country representative for HelpAge International, a United Kingdom-based charity that promotes the rights of older people.

“The more data you have, the more numbers you have, and donors are more likely to want to fund a project serving more people.” For example, a proposal by UNICEF to help 10,000 children will get more attention from a donor than an initiative to help 5,000 elderly people, he added.

Scarce infrastructure and lack of accessibility makes gathering data in South Sudan challenging, especially when it comes to people with disabilities who can often become invisible. Conflict exacerbates the issue, as those who can’t easily escape when clashes erupt are often left behind, and humanitarians focus on the people who can seek out services at displacement camps and other locations where aid is available.

“In many emergency situations, systems need to be set up very quickly, but these systems hardly take into account that there might be specific needs to deal with … this is something that has to be taken up in standard protocols,” said Johannes Trimmel, program director for disability-inclusive development for the NGO Sightsavers.

Trimmel is spearheading a £30 million ($38 million) six-year program funded by the U.K.’s Department for International Development, tackling stigma and discrimination and finding approaches to ensure development efforts reach people with disabilities so they have access to education, and employment opportunities. The project is being implemented in Jordan, Kenya, Tanzania, Nigeria, Bangladesh, and Nepal, and while still in its initial phase, Trimmel has noted a few key takeaways.

Access to information helps provide clarity in terms of the realities that people are facing, rather than building programs on “vague assumptions,” he said. Additionally, partners are working within the system to support existing health, education, and employment systems, becoming more inclusive and accessible for people with disabilities.

They are also ensuring that people have the opportunity to have stable livelihoods. This includes empowering people with disabilities through a multifaceted approach, strengthening their self-confidence, and training institutions and employers to bolster access to education and skills training. It is also about addressing exclusion barriers, especially with regard to perceptions and attitudes.

As many people with disabilities in Juba say they lack job prospects, especially those living in the civilian protection site, linkages with potential employment opportunities offered by such programs are needed.

Narrowing the gap

Disability experts such as Trimmel believe that in order for things to change, NGOs need to start asking questions such as whether their programs are adaptive to people with disabilities and if there are inherent barriers that need to be removed. This could include mandatory requirements from donors to ensure organizations’ activities can positively impact everyone. He supports the idea of having a disability focal point in every organization but cautions that it will only be effective if it’s part of a larger organizational mandate.

Ultimately, for genuine change to occur, there needs to be a shift in attitudes and primary concepts, Trimmel noted, similar to what took place with women and children more than two decades ago. “If you think back 25 years in programs in development and cooperation and humanitarian aid, few people would think about the need to give extra thought so that women could equally participate as men in our programs.”

“With women and children it’s changed tremendously,” he said. “With disabilities, we’re not there yet.”