Executive Summary

A woman uses the tricycle she received from HI to transport her goods to the market.

Image description

A woman uses the tricycle she received from HI to transport her goods to the market.

End of image description

The Inter-Agency Standing Committee (IASC) Guidelines on the Inclusion of Persons with Disabilities in Humanitarian Action (2019) set out four ‘must do’ actions to identify and respond to the needs and rights of persons with disabilities. They are: 1) promote meaningful participation; 2) remove barriers; 3) empower persons with disabilities and support them, as well as development and humanitarian actors, to develop their capacities; and 4) disaggregate data for monitoring inclusion. Developed through a participatory process over three years, the Guidelines enjoy strong moral and policy support in the humanitarian community. Two years after their launch, the question is how and to what extent they have started to find practical application in the field.

This study investigates how humanitarian organizations implement the four ‘must do’ actions in South Sudan. It shows that mainstream and inclusion-focused organizations actively promote their implementation to make disability inclusion an integral part of humanitarian action, investing heavily in capacity-building and awareness-raising at all levels of the response. Thanks to these efforts, tangible progress is being made. Humanitarian actors promote the meaningful participation of persons with disabilities and the establishment of organizations of persons with disabilities (OPDs) and self-help groups, while dual-mandate non-governmental organizations (NGOs), working in both the development and humanitarian sectors, also invest in the capacity-building of OPDs. Moreover, humanitarian organizations are removing barriers by making their distribution points and service facilities more accessible and by addressing attitudinal and institutional barriers within their organizations, for example by recruiting persons with disabilities. They also invest in the empowerment of persons with disabilities and capacity-building. Furthermore, humanitarian actors increasingly incorporate the Washington Group Short Set of Questions (see Box 1) into their monitoring and evaluation tools, including needs assessments, as well as collecting data on barriers and specific risks that persons with disabilities face.

Nevertheless, serious gaps and challenges to disability inclusion remain. Humanitarian organizations still do not recognize the diversity of disability and lack strategies to include persons with intellectual and psychosocial impairments. Moreover, persons with disabilities rarely participate in the project design phase and seldom contribute to programme development due to persisting attitudinal, environmental and institutional barriers. Furthermore, the Humanitarian Country Team in South Sudan has no systematic approach for the collection, analysis and use of either disability-disaggregated data or information on risks, capacities and unmet needs of persons with disabilities. This results in important information gaps on barriers to inclusion. In addition, communication barriers and lack of ‘reasonable accommodation’1 in consultation meetings hinder the full and effective participation of persons with hearing, visual and other types of disabilities and make them dependent on family members and caregivers.

Thus, more efforts are necessary to achieve the full inclusion of persons with disabilities. It is crucial to support meaningful participation, establish accountability mechanisms, and strengthen national OPDs so that they become independent from their international partners and gain more influence as advocates for their rights. This entails encouraging the establishment of OPDs outside the capital Juba and investing in capacity-building. Moreover, international and national humanitarian organizations, in partnership with OPDs, should continue their awareness-raising activities among local traditional leaders, communities and their own staff to reduce stigma and misconceptions, particularly against persons with intellectual and psychosocial impairments. In addition, more action is necessary to offer consultations in accessible formats so that persons with all types of impairments can make their voices heard. Finally, the Humanitarian Country Team and cluster leads should approach data collection on disability in a systematic fashion to close important data gaps and encourage humanitarian actors to use this data for inclusive programming. Otherwise, the risk of persons with disabilities being excluded and left behind will remain high.