Despite significant attitudinal, environmental and institutional barriers to disability inclusion in South Sudan, humanitarian actors currently demonstrate a high level of awareness of the gaps and challenges that hinder access to services and prevent the meaningful participation of persons with disabilities at all levels and in all stages of the response. This report identifies three main challenges to the inclusion of persons with disabilities:
Moreover, all respondents stressed that the COVID-19 pandemic and the measures to contain the spread of the virus have limited the meaningful participation of persons with disabilities and reduced opportunities for capacity-building. Some interventions continued with an online format, but the absence of reasonable accommodation and stable internet access have contributed to the exclusion of persons with disabilities from cluster coordination and consultation meetings.
However, and quite remarkably, all organizations that participated in this study had taken at least some measures to address this exclusion and to promote meaningful participation, removal of barriers, empowerment, and collection and analysis of disaggregated data. The organizations involve community leaders (usually called local ‘chiefs’) in awareness-raising sessions and support the establishment of community groups or OPDs. Inclusion-focused NGOs give presentations on disability inclusion in cluster meetings, for example, in the health, protection, food security and livelihood clusters, organize workshops for all cluster leaders, develop documents and guidelines on inclusion, engage in coaching for mainstream partners, conduct barriers and facilitators assessments, and provide training to senior management and field monitors. Some mainstream organizations have begun to update their organizational policies at the country level, while donors have made inclusion a requirement for funding, though the extent to which they pressure their partners to promote meaningful participation, removal of barriers, empowerment, capacity-building and data collection on disability varies. All of these efforts have yielded positive results: OPDs in Juba founded a national umbrella organization; persons with disabilities have begun to act as inclusion trainers to humanitarian organizations; and some international organizations have set up dedicated focal points within their own structures to change their organizational practices. Unsurprisingly, respondents highlighted improvements in terms of data collection on disability, cooperation with OPDs and the participation of persons with disabilities in project implementation and monitoring. Moreover, the number of informal groups and OPDs in remote regions outside Juba and in the IDP camps is slowly increasing.
Despite this progress, much work remains to be done. First, humanitarian organizations still fail to recognize the diversity of persons with disabilities. In particular, persons with intellectual and psychosocial disabilities have no chance to have their voices heard because they are absent from the national disability movement and the humanitarian response. Second, and related to the first point, structural barriers, such as the lack of local sign language interpreters, the poor infrastructure and deep-rooted prejudices and misconceptions, are hard to overcome for individual organizations and require investment from donors and the national government. Third, initial steps have been made by the humanitarian country team to include disability in Humanitarian Needs Overviews and response plans, but data on disability still needs to better reflect the local reality and be integrated into programming. Donors play an essential role in further pushing (lead) agencies, such as OCHA and IOM, and NGOs to take a more strategic approach and integrate disability as a cross-cutting issue in all clusters. Currently, donors themselves often do not have a good understanding of disability or strategies with clear indicators against which humanitarian organizations can report progress on inclusion.
Moreover, this study reveals that inclusion-focused NGOs, such as CBM, HI and Light for the World enabled organizational change towards disability inclusion. Their advocacy and capacity-building activities have strengthened OPDs and self-help groups, contributed to their empowerment, raised awareness of the rights of persons with disabilities among humanitarian organizations, both at senior management and field level. In this way, they contributed to the removal of attitudinal, environmental and institutional barriers. All mainstream organizations benefited from formal partnerships and consortia with inclusion-focused NGOs, although some of them established their own focal points for disability inclusion. Clearly, the human and financial capacity of these mainstream organizations is limited. It is therefore important to strengthen the capacities of OPDs and other local organizations so that they can advocate the rights of persons with disabilities and, when desired, also give technical support, particularly in areas that are hard to access.
In summary, since the publication of the IASC Guidelines in 2019, humanitarian organizations have made solid progress towards becoming disability inclusive, in particular at the national level. However, the actual impact of the Guidelines on humanitarian practice is hard to assess. The work of disability and/or inclusion-focused NGOs and OPDs remains indispensable to further promote the implementation of the Guidelines. If we consider the four ‘must do’ actions, most progress has been achieved with regard to the participation of persons with disabilities and empowerment/capacity-building, while the collection, analysis and use of disaggregated data and the removal of attitudinal and environmental barriers remain ongoing concerns.
Nonetheless, it should be stressed that in terms of data collection, some action has been taken to include persons with disabilities in countrywide surveys and needs assessments. Compared to two years ago, before the publication of the IASC Guidelines, when no robust data were collected and analysed, this represents a crucial step forward. Gaps remain in the use of these data for inclusive programming. Awareness-raising activities have also contributed to this progress in data collection and the removal of barriers for persons with disabilities. Yet, the interviews show that misconceptions among humanitarian staff persist.
Although the ‘must do’ actions are not always useful as an analytical framework to capture all the challenges and good practices of inclusive humanitarian action at various levels of the response, they have been helpful to evaluate progress on disability inclusion in different areas. In fact, for this report and other studies, they serve as a useful means to structure the data. Most importantly, they illustrate that ‘inclusion’ is not an abstract, technical term, but consists of key actions for all levels, sectors and actors.