Nothing About Us Without Us: Disability and Citizen Data for Change

Read about this commitment “Strengthening the collection, analysis, and use of data on persons with disabilities, including citizen data efforts led by organizations of persons with disabilities” by International Disability Alliance; CBM Global Disability Inclusion; Stakeholder Group of Persons with Disabilities here.

In 2024, International Disability Alliance (IDA), CBM Global, and the Stakeholder Group of Persons with Disabilities (SGPWD) committed to strengthening data collection, analysis, and dissemination of data for persons with disabilities. This commitment includes advocating for the inclusion of disability data in monitoring SDG progress, ensuring that persons with disabilities and their representative organizations are consulted in all parts of the data value chain, training enumerators on disability data collection, and strengthening data literacy skills for organizations of persons with disabilities (OPDs). These actions will lead to more data that reflects the reality of the lives of persons with disabilities, increased recognition of citizen data, and policy changes targeting persons with disabilities.

IDA, CBM, and SGPWD have made great progress towards these goals by hosting and participating in several international events advocating for the importance of data on persons with disabilities and citizen data efforts led by OPDs.

The panel at the event 'Gender Just and Disability Inclusive Climate Action.' The panellists are behind a desk and behind them is a screen for the audience.

CBM’s side event at SB62 advocating for the importance of gender and disability inclusion in climate action

Advocacy for a Disability-Inclusive Future

IDA, CBM, and SGPWD advocate for data that is not just about persons with disabilities but produced by and in consultation with OPDs. CBM’s Pilot Study of Deaf Indigenous Bolivian Women’s Health Experiences examines the disparities that deaf indigenous women face, especially in reproductive and sexual health. This work was highlighted at the Global Disability Summit 2025 at a side event titled “Deaf Indigenous women’s access to health: the power of citizen data and culturally designed training on SRHR.”

A group photo of six diverse speakers and participants standing in front of the Global Disability Summit 2025 backdrop in Berlin. The banner features logos of the German Federal Government, International Disability Alliance, and the Government of Jordan. The group includes both men and women, including a woman with a white cane.

Advocating for deaf-led research and data at the “Deaf Indigenous women’s access to health: the power of citizen data and culturally designed training on SRHR”

Advancing Disability Data and Inclusion at the Global Stage

July 1, 2025 – African Gender Statistics Forum: Elizabeth Lockwood, Representative for CBM at the UN, presented in a session titled “What does it take to build inclusive gender data systems?”
July 1, 2025 – FFD4: IDA co-organized the side event “Monitoring Social Development and Inclusion at the Local Level”
June 10-12 – COSP18: CBM presented in four events:
Elizabeth Lockwood and World Federation of the Deaf presented on citizen data and the research on deaf Indigenous women in Bolivia in side-event titled “Monitor the Rights of Persons with Disabilities at the Local Level: Evidence from Diverse Data.”
Lockwood spoke on access to justice in the context of SDGs at event titled “Legislation as a driver for change – a disruptive approach to the CRPD’s Article 13.”
Lockwood and Laisa Vereti from Pacific Disability Forum presented on disability data at “Accelerating Change: Evaluating the Impact of Global Disability Summit Commitments on Advancing CRPD Implementation in the Global South.”
CEO of CBM UK Kirsty Smith spoke on CBM’s work with OPD-led citizen data in the Philippines at “Innovation Financing on Care Economy, Social Protection, and Participation of Persons with Disabilities in the Formal Economy.”
June 19 – UNFCCC SB62: CBM UK Director of Advocacy Mark Barrell was a panelist in the side event “Gender-just and disability-inclusive climate action,” discussing solutions for an inclusive, climate resilient future.
April 2-3 – Global Disability Summit 2025: IDA co-hosted the Global Disability Summit 2025, where thousands of representatives from OPD, governments, and civil society convened to discuss the importance of disability inclusive development and the crucial role of OPDs. This summit included several events on data, including “Deaf Indigenous women’s access to health: the power of citizen data and culturally designed training on SRHR” and the Disability Data Forum.
January 22, 2025 – Citizen Data Around Persons with Disabilities: At a session organized by Collaborative on Citizen Data and the SGPWD, Lockwood moderated a discussion where CBM Global-partnered OPDs shared examples of OPD-led citizen data projects from around the world.

IDA, EDF and IDDC staff at the conference

IDA representatives bringing disability inclusion into every conversation at FFD4 in Seville

What’s Next?

IDA, CBM, and SGPWD continue their research and advocacy efforts globally, fighting to increase financing for disability data, implement policy changes for persons with disabilities, and ensure disability data is used in monitoring SDG progress.