3.3 Attitudinal Barriers: Stigma and Discrimination

In South Sudan, people widely believe that disability is a punishment from God or a curse (HI, 2017a, p.5). The society regards disability as a problem of the individual, and many people believe that persons with disabilities are a burden on their families and incapable of making a meaningful contribution to society (South Sudan Association of the Visually Impaired, 2016, p.1). Consequently, persons with disabilities are excluded and often remain invisible in the society. One respondent explains:

Representative of an inclusion-focused NGO

Many families hide members with a disability […] Persons with disabilities are stigmatized within their own families and in the community. Even in public, people with disabilities are hardly mentioned.

These prejudices against persons with disabilities hamper their inclusion in the humanitarian response in several ways. At programme level, humanitarian organizations have to work with communities and community leaders who widely discriminate against and stigmatize persons with disabilities. This challenges meaningful participation, the removal of barriers, empowerment and data collection, particularly when humanitarian organizations are not aware of these negative attitudes in the society. For example, consultations and community discussions are regularly organized in locations that are hard to reach for persons with disabilities, or the relevant information is not available in multiple formats. This implies that humanitarian organizations need to be deliberate in targeting and reaching out to persons with disabilities and in assessing barriers in a comprehensive manner as part of their needs assessments. If they do not do so, persons with disabilities have no chance to make their voices heard in the response.

Yet, negative attitudes and/or misconceptions about persons with disabilities are not only widespread in South Sudanese society; they also persist in the humanitarian community. Humanitarian actors often fail to recognize the diversity of disability: if they include disability in their programmes and projects at all, they often focus on more ‘obvious and visible’ disabilities. To quote one respondent:

Representative of a United Nations agency

Of course, we need to write about disability in our proposals; we need to consider disabilities in our implementation. But often it is code for physical disabilities. We often do not consider intellectual disability. There is a lot of discrimination and bias and quite harsh treatment of persons with intellectual disabilities, both within the communities and also among humanitarian staff.

This statement highlights two important points. On the one hand, inclusion often begins as a strongly donor-driven process, guided by donor funding requirements. On the other hand, misconceptions about disability effectively exclude persons with certain types of disabilities, particularly those with an intellectual impairment. The same respondent adds:

Representative of a United Nations agency

When we say ‘disability’, we often just assume that this is a person who can’t walk. I think that this is the approach we often take in our work.

In other words, despite a growing awareness of disability inclusion, continued efforts are needed to remove persisting attitudinal barriers, both within the society and among humanitarian staff. Inclusion must therefore become an integral part of principled humanitarian action for persons with all types of disabilities, not only at the policy level – enshrined in donor requirements and organizational strategies – but also in practice. Otherwise, persons with disabilities continue to be at a heightened risk of being excluded from the response.