The empowerment of persons with disabilities and developing the capacities of OPDs and other humanitarian stakeholders in disability-inclusive humanitarian action is another central element to ensure that persons with disabilities are not left behind.16 It entails raising awareness among persons with disabilities about their rights and supporting them to build their knowledge and leadership skills to contribute to the humanitarian response. Simultaneously, humanitarian organizations have to build their knowledge, skills, tools and financial means to design and implement inclusive humanitarian programmes. This entails strengthening their understanding of the rights of persons with disabilities and familiarizing themselves with practical approaches that promote inclusion (IASC, 2019, p.20). In short, capacity-building requires that both persons with disabilities and humanitarian workers strengthen their knowledge, skills and understanding of inclusive humanitarian action (IASC, 2019, p.20).
The data show that humanitarian stakeholders in South Sudan attach great importance to their capacity-building and the empowerment of persons with disabilities. In fact, it is a prerequisite for ensuring meaningful participation, removal of barriers and data collection on disability. All organizations in this study had either developed or engaged in capacity-building activities with their international and local partners or had themselves participated in training courses, coaching sessions and sensitization. Instead of stressing obstacles or challenges to aspects of empowerment and capacity-building, the respondents mostly highlighted good practices and important benefits for their organization and the inclusion of persons with disabilities (see section below). Where they did identify challenges for this action point, these mainly related to the empowerment of persons with disabilities and their representative organizations. Three main factors were a hindrance to their empowerment: 1) stigma within the society, which leads to their exclusion; 2) limited funding; and 3) coordination issues among inclusion-focused NGOs. These points will be elaborated in the following paragraphs.
Empowerment could be far more effective if persons with disabilities were not systematically excluded from the society and organizations collected more solid data on disability. Needs assessments should reflect the views, priorities and preferences of all affected people, including persons with disabilities. In addition, persons with disabilities need to have more opportunities to become aware about their rights.
Some organizations have started to invest in the capacity-building of OPDs, to enhance their knowledge about the CRPD, international humanitarian law and the functioning of the humanitarian system. This also entails providing OPDs with skills related to humanitarian programming and coordination, including budgeting and proposal writing.
Donors do not always fund these activities because they see them as part of development rather than humanitarian action. Thus, it is crucial that donors do fund these capacity-building activities for OPDs as part of humanitarian action as it could facilitate inclusion more generally.
Finally, disability and inclusion-focused organizations that engage in OPD empowerment and capacity-building could be more effective if they improved their coordination. This would reduce costs and either help to identify gaps or address the duplication of activities. One respondent remarked:
Representative of an inclusion-focused NGO |
In South Sudan, we have an OPD strengthening programme. And there are other organizations on the same programme. And we’re using the same OPD and the same activities but we are lacking coordination. If we coordinated better and worked together, we could save money and have a meaningful impact. So, this is the gap from inclusion-focused organizations. |
Despite these gaps, the empowerment of persons with disabilities has moved ahead. The best example is perhaps the aforementioned establishment of the national umbrella organization, the South Sudan Union of Persons with Disabilities, in September 2020 (Light for the World, 2020). Although its establishment is only a first step, and it depends on financial and technical support from Light for the World, it shows that the disability movement is gaining political influence in South Sudan. CBM has also supported the national Union by organizing a General Assembly, which brings together persons with disabilities across the whole country and also involves knowledge sharing and exchange of experiences, with speakers from the National Union of Persons with Disabilities in Kenya, Uganda and Tanzania (interview with CBM). However, these activities tend to be more development-related and are not a core part of humanitarian action.
Moreover, CBM and HI advocate a stronger representation of OPDs in the cluster system. Some OPDs give training courses on inclusion to mainstream organizations, while others raise awareness on disability rights in IDP camps. Simultaneously, inclusion-focused organizations further invest in OPD capacity-building, for example through ‘on the job training’. One respondent explained:
Representative of an inclusion-focused NGO |
Once a week, our head of finance spends time in the office of our three partner OPDs to train them on financial management to make sure that they learn how to report to donors. Thanks to his ‘on-the-job’ coaching, we are confident that by the end of this year, or next year, they will have the capacity to report to donors without our support. |
OPDs in Juba are also gaining influence, and more and more OPDs are establishing themselves in other parts of the country, but the exact numbers are not known. However, persons with disabilities in the IDP settlements rarely organize themselves into self-help groups to represent their interests. Some inclusion-focused and mainstream organizations therefore set up projects that encourage the formation of informal groups and build the capacities of the participants. One respondent elaborates:
Representative of a United Nations agency |
We have a women’s participation project, which is designed to promote women’s participation in the community, in camp life. But part of that project has always been, as much as possible, to include women with disabilities. It is a very small project and targeted less than 100 people in the last couple of years. But part of that has been to include women with disabilities, to make sure that they are getting leadership training and business skills training. Often there is also a small-scale cash-based intervention and livelihood support. |
Such initiatives demonstrate an increased awareness of the rights of persons with disabilities, as well as of the principles and practical approaches to inclusion. To build on this momentum, disability and/or inclusion-focused organizations engage in capacity-building of mainstream humanitarian actors. They offer training and learning sessions on inclusive humanitarian action, they coach and mentor staff at various levels of the response, engage in knowledge and experience sharing, conduct assessments and give advice, for example with regard to inclusive programme design and management and development of inclusive policies or strategies. Respondents confirmed that disability and/or inclusion-focused NGOs are very committed.
Representative of an INGO |
CBM gives our staff training and helps to improve our policy. Sometimes they do so by sharing best practices, even from those in other parts of the world. I think this is really, really important. |
The courses and coaching sessions mainly focus on disability mainstreaming in existing projects and programmes. One respondent explains:
Representative of an inclusion-focused NGO |
We make sure that we do not create separate programmes for persons with disabilities but that their various programmes incorporate disability, and that disability is considered in their various plans and the different programmes that they are implementing. We believe that this is an effective approach, which can have some positive results. |
There are two routes by which mainstream actors become engaged in capacity-building. First, they approach inclusion-focused organizations because their donors, senior management or even headquarters have requested the inclusion of persons with disabilities in programmes and organizational structures. Second, inclusion-focused NGOs approach mainstream organizations with whom they feel there is mutual trust and sincere commitment to change practices (interview with an inclusion-focused NGO). In 2019, for example, a United Nations agency began a partnership with HI on its own initiative because it realized that it lacked expertise on disability inclusion. One respondent summarizes:
Representative of a United Nations agency |
We had a bilateral discussion with HI back in 2019 to detect areas of work that can benefit from HI’s expertise on disability inclusion. We had strong support from the programme management and this helped us a lot in terms of becoming more inclusive. […] When we look at our new protection policy, inclusion is something that became a mandatory task in every part of our work. |
However, the extent to which the publication of the United Nations Disability Strategy and the IASC Guidelines in 2019 have influenced the decision to expand this partnership with HI are hard to assess.17 Interviews nevertheless confirm that United Nations agencies have been pushed to accelerate their efforts to include persons with disabilities:
Representative of an inclusion-focused NGO |
There are some organizations that are stronger and easier to work with because they are having a push, I think, within their strategies, within their own organization or plans to have inclusion in place. So, you will find organizations like IOM, UNICEF, WFP. Some have a big push towards inclusion. |
Disability and/or inclusion-focused organizations provide capacity-building to staff at all levels of the response and ensure that training and coaching is tailored to the needs and expectations of different departments and levels of programming. One respondent explains:
Representative of an inclusion-focused NGO |
When we engage with senior management, we tend to focus on inclusive programming, for example, on issues related to universal design18 and the participation of persons with disabilities in the development of programmes and projects. Whereas our engagement with frontline staff in various organizations focuses on inclusive language, for example, the language that they are supposed to use when addressing people with disabilities. […] We try to ensure that they have a positive language when they are dealing with persons with disabilities. |
Mainstream organizations evaluate existing cooperation with disability and/or inclusion-focused organizations positively, and some indicate that inclusion has become a priority in their work.
Representative of a United Nations agency |
Our organization has benefited a lot in terms of the capacity-building, trainings, and from gap assessment in terms of inclusion. It has helped us to come up with a new disability guide for the country office, which will inform our programming. |
Nevertheless, South Sudan is a big country with violent conflicts, a failing government and weak civil society. Consequently, the needs of the population are considerable, and most organizations have only recently started to work on inclusive humanitarian action. INGOs in particular, unlike United Nations agencies, cannot rely on technical support from their own headquarters, which means that inclusion-focused organizations have to invest more time and financial resources to train and coach international and national staff (interview with an inclusion-focused NGO). Inclusion-focused NGOs would like to invest more time and resources in capacity-building of humanitarian staff, but the amount of available funding is too small.
Representative of an inclusion-focused NGO |
We would be able to do quite [sic] more, but now with how things are, usually the allocation even from the donors, from the pooled funds, from most of the donors, the funding is usually small. |