COSP-19 Side-Event: Article 31 at 20: Progress and Remaining Gaps on Statistics and Data Collection

Ambassador Porfirio Thierry Muñoz Ledo

Ambassador Porfirio Thierry Muñoz Ledo delivered opening remarks. Twenty years after the adoption of the Convention on the Rights of Persons with Disabilities, the remarks emphasized that accurate, timely, and disaggregated disability data are essential for advancing human rights and developing effective, evidence-based public policies. It highlighted the importance of using internationally recognized approaches such as the Washington Group (WG) question sets, to improve the collection and understanding of disability data. Mexico has strengthened its inclusive statistical system by incorporating the WG short set into its 2020 Population and Housing Census, estimating that 16.5% of the population—more than 20 million people—live with a disability. The statement concludes by reaffirming Mexico’s commitment to improving accessible and comparable data systems through collaboration with governments, international organizations, academia, civil society, and persons with disabilities to support more inclusive and equitable societies.

Ahmed Ghanem (United Nations Global Disability Fund Secretariat)

Ahmed Ghanem introduced the speakers and moderated this event.

Dr Elizabeth Lockwood (CBM Global Disability Inclusion)

Dr Elizabeth Lockwood provided a summary of progress and remaining gaps of OPD-led data projects, including citizen data initiatives, with CBM Global and key partners. Lessons learned and areas of continued focus were shared.  Article 31 and the 2030 Agenda have been key global tools underpinning the strengthening of disability data, including citizen data, led by organizations of persons with disabilities.

Dr. Daniel Mont (Center for Inclusive Policy)

Dr. Daniel Mont provided an overview of the development and rationale of various Washington Group tools, including those made in collaboration with ILO and UNICEF, as well as discussing current tools under development. We have a set of tools from the Washington Group on Disability Statistics to collect extensive, quality, internationally comparable data on disability, though certain challenges still remain. The presentation started with the Washington Group Short Set (WG-SS) of questions, then moved onto other longer Washington Group question sets that address WG-SS shortcomings, and then to modules to collect environmental information in different settings such as work or education.

Dulamsuren Jigjid  (CBM Global and Culture Centre of the Deaf Mongolia)

Dulamsuren Jigjid proposed the principle of “Nothing about us without data”. OPDs aren’t just data subjects — they’re key leaders in collecting, interpreting, and using disability data to ensure the lived experiences of persons with disabilities are accurately reflected in policies and decisions. Good-quality disability data is essential for putting the CRPD into practice. When OPDs lead data collection, they help make the voices of persons with disabilities visible, strengthening more inclusive, evidence-based advocacy and policymaking. 

Prof. Sophie Mitra (Fordham University and Disability Data Initiative (DDI))

Prof. Sophie Mitra introduced the initiative and shared results from the DDI’s Disability Statistics – Questionnaire Review (DS-QR) database showing that most countries have collected functional difficulty questions, including the Washington Group short set, in population censuses and household surveys. However, there remain disability data gaps in some countries and/or for some topics. Monitoring rights over time is often not possible due to piece-meal data collection. Disability data needs to be systematically and regularly collected so monitoring CRPD implementation becomes possible worldwide.

Dr Bradley Carpenter (South Africa Medical Research Council and DDI)

Dr Bradley Carpenter presented results from the DDI’s Disability Statistics – Estimates (DS-E) database. While many countries have collected disability data through population censuses and household surveys, often, the data has not been analyzed to produce disability-disaggregated statistics and therefore is not usable. Even when the disability-disaggregated statistics are produced, they may not be accessible by non-specialists. The DDI’s DS-E database has for 65 countries and 35 indicators disaggregated statistics in interactive and downloadable formats. Engagement with various stakeholders and capacity building are necessary for disability data to be analyzed and used for advocacy and policy.

Juan Ángel De Gouveia (IDA, RIADIS)

Juan Ángel De Gouveia stressed that disability data is to measure exclusion and to make inclusion unavoidable. IDA has worked with OPDs globally to generate evidence from lived experience and collective knowledge. Their experience shows that disability data becomes more truthful when persons with disabilities help produce it. But this requires investment. OPDs cannot carry the burden of evidence through unpaid labour, short-term projects, or symbolic consultation. They must be supported as researchers, trainers, enumerators, analysts and accountability actors. It was argued that as we look to the next twenty years of the CRPD, Article 31 must help us do more than count persons with disabilities. It must help societies see differently.

Iiro Toikka (Finnish Institute for Health and Welfare)

Iiro Toikka noted that Article 31 is not only a technical provision but a cornerstone of rights, participation, and accountability. While significant progress has been made through the Washington Group methodology and greater involvement of organizations of persons with disabilities, major data gaps and inconsistent use of data remain. Finland emphasized that meaningful participation -“Nothing About Us Without Us” – is essential to producing better data that informs policy. Ultimately, disability data must drive inclusion, remove barriers, measure progress, and strengthen accountability.