3.5 Perceptions of Disability: an Additional Complexity in an Already Complex Context

Humanitarian action commonly takes place in protracted, severe and complex crises, but many respondents agree that the humanitarian context in South Sudan is one of the most challenging worldwide. The poor infrastructure, corruption, on-going armed violence, and climate change – resulting in both droughts and floods – make large parts of the country inaccessible for humanitarian actors. Although humanitarian organizations do their best to reach all people in need, even in remote parts of the country, they are not always successful. Persons with disabilities in particular are at a higher risk of being left behind because of environmental, institutional and attitudinal barriers in organizations and society.

The following quotes illustrate that humanitarian actors perceive the context as being too complex for engaging affected populations, including persons with disabilities:

Representative of a United Nations agency

Many humanitarian organizations put their tents on their back and walk into the woods. That is how you do a lot of humanitarian work. There is a physical barrier of getting to places. Oftentimes, you might not be able to access people who have disabilities on a face-to-face basis.

Another respondent adds:

Representative of an INGO

Well, the donor guidelines are there, but you have to see the context. For example, when you are given two weeks to work on a project, some of the locations you are intervening are far away from Juba. The flight is only once a week, and you cannot spend the entire week in the field. So you end up writing from here [Juba] and just impose the project on them, or you try to convince them to accept that this is the package. Effectively, yes, the donor requests from you to consult with the beneficiaries. Again, this consultation cannot be robust, because there are other limitations, you know, you cannot travel to this place, or you cannot spend much time discussing with them.

These quotes reflect the multiple attitudinal and institutional barriers of humanitarian actors who perceive disability as an ‘additional’ complexity in an already complex context. Clearly, there is a lack of understanding on how to design strategies for inclusive humanitarian action. If two weeks is too short to conduct the necessary consultations for proposal writing, organizations should work on the assumption that at least 15 per cent of the population have a disability. Moreover, when they operate in the country for longer periods, the organizations should have representative key informants in the project areas.

Furthermore, respondents highlighted that they struggled to include persons with intellectual or hearing disabilities. The following quote refers to this difficulty:

Representative of a United Nations agency

There is [sic] all kinds of layers of communication barriers, and when you add a disability on top of that, such as an intellectual disability or hearing disability, it gets a lot more complicated. One of the challenges is that no one has a good strategy for really dealing with that. No one has a really good strategy, particularly around hearing disabilities. There is something like a local sign language in some areas, but it is not something that anyone really knows how to do. And so you rely on caregivers who do the best they can.

At present, the school for sign language interpretation is not accessible for all those who need it,11 but caregivers, teachers and social workers often act as interpreters. Moreover, there are some sign language interpreters in the capital Juba, but the number is very small. Students wishing to learn sign language interpretation and translation often need to go to Kenya or Uganda (interview with a representative of an INGO). The different local languages spoken across the country may be an additional communication barrier for humanitarian actors who wish to communicate with affected populations. However, it is vital that intellectual or hearing impairments do not lead to exclusion. Humanitarians should be aware that communication with deaf persons may require multiple layers of interpretation and should indicate additional costs in their budgets, including when caregivers, teachers and social workers act as interpreters.

In summary, there exist many misunderstandings of disability among humanitarian staff, which lead to the exclusion of persons with disabilities in practice. In particular, the number of persons with hearing impairments is likely to be under-reported and their needs not included in programming. At the very least, humanitarian actors should be aware of these barriers, use an informed estimate of 15 per cent of persons with disabilities for programming and request additional funding for interpretation services.