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Including everyone: Strengthening the collection and use of data about persons with disabilities in humanitarian situations

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Abstract

To ensure that persons with disabilities are protected and assisted during humanitarian emergencies, reliable and upto-date information is needed on the number of individuals with a disability in the affected population and the barriers they face. The fact that disability-disaggregated data are scarce – especially in humanitarian situations – has garnered considerable political commitment to further improve data availability. However, United Nations agencies, States Parties to the Convention on the Rights of Persons with Disabilities, and humanitarian non-governmental organizations are still in the nascent stages of improving their data collection processes in humanitarian action to conform to the Convention’s article 11 (protection and safety of persons with disabilities in situations of risk) and article 31 (collect appropriate information, including statistical and research data).

The slow progress towards improving disability-disaggregated data in humanitarian situations is partly a result of the wide diversity of the crises themselves. Different types of emergency contexts pose varying challenges for data collectors and impact persons with disabilities in different ways.

This publication presents four humanitarian case studies: the 2015 Nepal earthquake, the ongoing humanitarian response in Somalia, the Rohingya refugee operation in Bangladesh, and the European migrant and refugee crisis. Each example provides perspectives on the importance of disability-disaggregated data in shaping humanitarian actors’ planning and implementation processes.

Current humanitarian needs assessment frameworks and guidance are also examined, considering the extent to which disability data disaggregation plays a part. Coordinated data collection efforts, such as the Joint Intersectoral Analysis Framework now under development, can be a useful starting point for improving the assessment process from the perspective of persons with disabilities.

This publication briefly documents progress in policies and guidelines related to disability data in the humanitarian sector and reviews the existing tools and mechanisms for gathering data on persons with disabilities. While there is growing commitment towards greater inclusivity in humanitarian action through better data on persons with disabilities, the question remains on how to do this. The existing tools are neither well adapted to data collection concerning persons with disabilities nor sufficient to address disability as a crosscutting issue. With humanitarian actors working side by side in diverse settings, common data standards are needed to allow comparability and meaningful data exchange.

When data collection approaches are standardized, disaggregation of data by disability in humanitarian action is possible. Currently, only 6 per cent of the indicators in the United Nations Inter-agency Standing Committee register can be disaggregated by disability. The recommended approach for producing comparable disability data is the use of the tools developed by the Washington Group on Disability Statistics.

The ongoing reforms of the international humanitarian system offer a unique opportunity to redefine and standardize disability-disaggregated data within the humanitarian programme cycle.