One legacy of decades of conflict in South Sudan is the high number of people with physical disabilities – the result both of war injuries and sicknesses left untreated in the absence of a functioning health sector.
South Sudan gained independence from Sudan in 2011 after a long struggle, but a brutal civil war broke out two years later. Today, the country is the source of the largest refugee crisis in Africa and the fastest-growing refugee population in the world. Some 3.5 million South Sudanese have been displaced, including around 2 million internally displaced people (IDPs).
Inside South Sudan, an estimated 250,000 people with disabilities are sheltering in U.N. bases designated “Protection of Civilian (PoC) sites” throughout the country. Some 1 million others may be living uncounted in more remote areas where attempts to report and track disabilities is all but futile. An unknown number have fled into neighboring countries such as Uganda.
Human Rights Watch interviewed dozens of elderly people and people with disabilities in South Sudan earlier this year. They found that, a year after humanitarian agencies signed a charter to provide better access to aid for people with disabilities, the elderly and disabled face greater risks of hunger and atrocities in South Sudan. Refugees Deeply spoke to Jonathan Pedneault, Human Rights Watch’s South Sudan researcher and the author of the report, about its findings.
Refugees Deeply: What are the biggest challenges facing people with disabilities who have been displaced inside South Sudan?
Jonathan Pedneault: At the time of any attack, people with disabilities are more likely to be targeted because they are left behind or they’re less capable of moving quickly to escape the fighting or find shelter. There have been several cases where people with disabilities were left behind during attacks on displacement sites and were killed as a result. They were not killed because of their disability, but rather because they were not able to escape quickly enough and they are part of a body of civilians that are under attack, often because of their ethnicity.
Displaced people with disabilities face a whole range of other challenges, from access to water, sanitation and hygiene infrastructures to food distribution. They have to get there, and then they have to come back with their rations. That can prove to be a difficult exercise for some people. They have to rely on neighbors and relatives to help them carry the food, soap or cooking oil, often for a small fee.
The infrastructure that humanitarians provide at displacement sites [is] not always adapted to their needs: latrines without hand bars or showers that are too high or with floors made out of tarpaulin, which is extremely slippery.
Refugees Deeply: How does the situation vary between PoC sites and other places where displaced people are sheltering in the country?
Pedneault: As the PoC sites are located inside of U.N. bases, they’re much more accessible to U.N. agencies and other humanitarian actors and safer, generally speaking. In other locations the access to services is much lower. In some cases you’ll find very tiny displacement locations way out there in the bush or in the swamps that are difficult to access for anyone. That’s why those people are there in the first place – because it’s difficult for armed attackers to access – but that makes it also difficult for humanitarian agencies and others to reach them. Or they’re located in places where one of the parties is obstructing access to aid.
I’ve met with a few elderly people and people with disabilities in remote parts of Unity State that were completely left to their own devices with no family members present or willing to help them. They are much more at risk of being food insecure, having difficulties finding food or of developing other health-related issues because it’s much more difficult for them to access health services.
Refugees Deeply: How much information do humanitarian organizations have about people with disabilities in South Sudan?
Pedneault: Humanitarian organizations categorize People with Special Needs (PSNs), and collect data on them, but that also includes older people and children without their parents. In certain settings, especially in POCs, the system is well-established, but in other IDP locations that are more difficult to access, there is very little available data.
A lot of humanitarian actors rely on local community leaders to gather this data. Sometimes it’s accurate, sometimes it’s not. It’s very difficult to have a good sense of how many people with disabilities or older people are in each of those specific locations, let alone actually knowing where all of those specific locations actually are, because they can be very remote.
Humanitarian actors in South Sudan also face a number of constraints and challenges, both in terms of funding, but also in terms of obstruction by government or opposition forces.
Refugees Deeply: Have there been any improvements following the charter on inclusion of persons with disabilities in humanitarian action?
Pedneault: There are still humongous gaps in terms of how humanitarian actors are responding to people with disabilities, and especially in the context of PoC sites, which are amongst the safest and easiest places for humanitarian actors to operate. It’s unfortunate that you still find a large number of latrines and showers that are not adapted for people with disabilities in the PoCs, or bridges that are not leveled or are destroyed, which means that people in wheelchairs are facing a lot of challenges just to get around the camp. Now that the PoC sites are becoming almost institutionalized – it’s been three and a half years that people have been living there – it’s high time that organizations put more thinking into how to make the sites accessible to everyone.
One must understand that the camps, as much as they are protecting the population inside, are also prisons, because government forces are often present around the camps and they target civilians who venture outside, meaning that it’s extremely difficult for anyone to go out. Young men may be accused of being rebels, women face sexual and gender-based violence and obviously it would be extremely difficult for people with disabilities to leave. Because of that there is a sense of depression and gloom. There’s a state of hopelessness.
Refugees Deeply: What practical solutions are you advocating for based on your research?
Pedneault: We’re asking for more latrines and more showers to be built by humanitarian actors. We’re asking for disaggregated data for people to understand how many people with disabilities are present in the country.
We’d like the U.N. mission also to include a section on people with disabilities and older people in their human rights reporting, and potentially appoint an adviser on the protection of those individuals.
At the end of the day it boils down to the fact that humanitarian actors should ensure that people with disabilities have access to the same levels of humanitarian services as everyone else without accentuating their marginalization in the community. That can be done by fostering groups that represent people with disabilities inside of the PoC sites, for instance.
Refugees Deeply: Are there local groups doing innovative work with displaced people with disabilities?
Pedneault: The ICRC has been active with people with disabilities in South Sudan for a long time, providing assisting devices and prosthesis for people who have been amputated. In Juba, they’re organizing wheelchair basketball matches and other activities [to] ramp up the morale of people with disabilities. There are a number of local organizations, as well, but as with every other local organization in South Sudan, they’re under a lot of pressure from the government, but also because they lack funding and financial resources to do meaningful work, let alone conduct advocacy at this moment.
This interview has been edited for length and clarity.