Abstract

Persons with disabilities make up an estimated 16 percent of the world's population according to the World Health Organization, yet they remain among the least visible groups in official statistics. Where disability is measured, it is often captured through one-off surveys or questions that do not follow international standards such as those of the Washington Group on Disability Statistics. Disability identifiers are rarely carried across censuses, household surveys, and administrative records, which limits analysis of how persons with disabilities fare in education, employment, health, and social protection.

As part of this session, this intervention will respond to the findings of the Inclusive Data Compass, which assesses how national data systems serve six communities, including persons with disabilities, across data availability, openness, rights and safeguards, planning and data use, capacity, and financing. Drawing on extensive work with organizations of persons with disabilities, Dr. Lockwood will reflect on what the Compass shows about the gap between national commitments and the routine production of disability data, and on where the enabling environment falls short. She will consider whether disability data is treated as a core output of national statistical systems or as an occasional add-on dependent on external funding.

Building on the session's discussion of intersectional analysis, the intervention will show why disability is a critical test case. Women and girls with disabilities, older persons with disabilities, and displaced persons and migrants with disabilities face compounded barriers that disappear when data is disaggregated along one dimension at a time. Making these experiences visible requires consistent identifiers, adequate sample sizes, and analytical methods that national statistical offices can apply routinely.

The intervention will also address the growing use of AI in statistical production and public decision making. When disability is missing from the underlying data, automated systems treat persons with disabilities as outliers or leave them out entirely. Inclusive data is therefore a precondition for AI that serves everyone.

Dr Lockwood will make the case that closing these gaps depends on meaningful participation. Aligned with Article 31 of the UN Convention on the Rights of Persons with Disabilities, organizations of persons with disabilities should be active and meaningful partners in deciding what is measured, how it is collected, and how it is used. Their engagement, including through citizen data that complements official statistics, strengthens the relevance, legitimacy, and uptake of national data.