As seen above, harsh treatment, invisibility and pervasive misconceptions hinder the inclusion of persons with disabilities in the society and the humanitarian response. In this context, OPDs play a critical role in advocating the rights of persons with disabilities. In South Sudan, OPDs have developed their organizational resources and capacities in recent years, with support from inclusion-focused NGOs. In 2020, for example, eight South Sudanese disability organizations, with support from the NGO Light for the World, founded a national umbrella body, the South Sudan Union of Persons with Disabilities.8 This body lobbies for the ratification of the CRPD and promotes the equal participation of persons with disabilities in all social, political and economic dimensions of public life (Light for the World, 2020). It should be noted, however, that the Union was established with the support of development actors rather than humanitarian funding programmes.
Only a few OPDs operate outside the capital and persons with intellectual disabilities rarely organize themselves into self-help groups or OPDs. This partly explains why persons with disabilities are often forgotten in the response and face significant discrimination and harsh treatment. To remove attitudinal barriers and ensure inclusive programming, humanitarian actors should invest in inclusive needs assessments and other accountability mechanisms, and engage community leaders to identify, consult and engage with persons with disabilities.
Many humanitarian and development organizations value the work of OPDs and self-help groups, particularly for their strong links with the local communities and community leaders. In fact, numerous humanitarian organizations collaborate with OPDs and self-help groups during the implementation of their projects to ensure the participation of persons with disabilities in implementation and monitoring (Interview with an inclusion-focused NGO). However, persons with disabilities rarely participate in the development of new humanitarian programmes and projects (ibid.). This is surprising in light of the donor requirements, which ask humanitarian organizations to provide information on disability inclusion in their proposals. Despite these requirements, donors often do not work with precise indicators and allocation criteria that would ensure that at least 15 per cent of the beneficiaries are persons with disabilities (Interview with an inclusion-focused NGO).9 Moreover, their understanding of ‘disability inclusion’ is often not in line with international standards and some only interpret it as remodeling of infrastructure.10
At the cluster level, OPDs are not strongly represented. There are two main reasons for this. First, the COVID-19 pandemic forced the coordinators to conduct the (cluster) meetings online. Many OPDs do not have an office with stable access to the internet, and where they do, their participation is hampered by the absence of reasonable accommodation, such as sign language interpreters or subtitles. Second, although humanitarian organizations have been present in South Sudan for a long time, many OPDs are still not familiar with the humanitarian system and frequently lack the capacities to acquire funding, implement projects, and operate independently from their international partners. However, this does not mean that OPDs do not make a vital contribution.
One respondent explains:
Representative of an international NGO [INGO] |
Of course, capacity-building is important in order to improve their work. They are not so autonomous, but when they engage in awareness-raising, for example, when they talk about disability […] they are really good. Their messages can be very strong and the fact that their organizations consist of persons with disabilities gives them a lot of credibility. |
These strong messages and credibility raise hope that humanitarian organizations will strengthen their collaboration with OPDs over time and invest in their capacity-building so that they can increase their representation in the cluster system. It seems certain that including persons with disabilities in needs assessments and regular consultations will further support inclusive humanitarian action at programme and project level.