Disability Data Initiative (DDI) Launches Comprehensive Dataset to Advance Disability Rights
The Disability Data Initiative (DDI) has launched two pioneering databases to address one of the most significant barriers to disability inclusion: the lack of reliable, disaggregated data. This initiative, led by Fordham University in collaboration with the South African Medical Research Council (SAMRC), provides critical insights into inequalities affecting persons with disabilities worldwide. By equipping policymakers, researchers, and advocates with comprehensive statistics, these databases lay the foundation for more inclusive policies and tangible improvements in the lives of persons with disabilities.
The SAMRC, through its Gender and Health Research Unit, played a critical role in developing the DDI. The organisation analysed thousands of international surveys and was instrumental in designing the databases’ user-friendly platforms, ensuring accessibility for policymakers and advocacy groups alike. This collaboration underscores the importance of global partnerships in advancing disability rights and driving data-informed decision-making.
“Disability data is more than just numbers—it reveals who is being left behind in society. Without accurate statistics, governments and organisations cannot effectively tackle education, employment, healthcare, and social participation disparities. People with disabilities face disproportionate challenges due to stigma, discrimination, and systemic barriers,” said Bradley Carpenter, a scientist at the SAMRC.
According to the World Health Organization (WHO), individuals with disabilities are twice as likely to experience conditions like depression and diabetes, 15 times more likely to face transportation difficulties, and twice as likely to be exposed to intimate partner violence or HIV. Yet, until now, limited data has prevented the creation of effective, evidence-based solutions.
The Disability Statistics – Estimates Database (DS-E Database) and the Disability Statistics – Questionnaire Review Database (DS-QR Database) change that. Covering 40 countries and 6,584 subnational locations, these databases offer interactive maps, tables, and globally comparable disability statistics. For the first time, users can easily analyse disability prevalence and disparities in education, economic security, health, and poverty. The DS-QR Database evaluates over 3,000 national surveys and censuses, tracking whether countries include internationally recognised disability-related questions—essential for generating consistent, comparable data.
At the launch event, Sophie Mitra, Founder of the Disability Data Initiative, stressed the urgent need for such tools: “The data confirms what disability advocates have long argued. Persons with disabilities are consistently being left behind. If we are serious about inclusion, we need to measure inequality and act on it. These databases provide the evidence base necessary for policymakers to prioritise disability-inclusive strategies.”
Gertrude Oforiwa Fefoame, Chair of the United Nation Committee on the Rights of Persons with Disabilities, highlighted the databases’ potential impact: “These databases will enable advocates to prioritise the most pressing issues for persons with disabilities, strengthening the case for targeted policies and programs. It will also allow advocates to explore intersectional disparities, such as the compounding challenges faced by men and girls with disabilities or, let's say, populations in rural areas as examples. It, therefore, equips advocates to move beyond too little evidence to become evidence-based.”
While disability data has often been fragmented or missing altogether, these databases consolidate and standardise information, making it easier for decision-makers to track progress and identify gaps. The DS-E Database, for example, shows that approximately one in six adults worldwide has some form of disability. It also reveals significant inequalities in education and economic security between persons with and without disabilities, both across and within countries. These findings make it clear that governments must take urgent action to address these disparities.
Yongyi Min, Chief of the SDG Monitoring Section at the United Nations, reinforced the databases' importance: “Data is the foundation for transformative change. So, we need to prioritise investment in robust data collection systems that reflect the realities of persons with a disability across diverse contexts. The SDG monitoring frameworks must be strengthened to ensure that no groups remain overlooked. So, I commend the effort of the Disability Data Initiative, and all partners involved. And I urge a continued collaboration to close data gaps and empower decision-making that truly reflects the diverse reality of all individuals.”
By making these tools publicly accessible, the DDI is empowering researchers, activists, and policymakers to drive change.
The databases are available on the DDI website alongside detailed analyses, infographics, and policy briefs to support advocacy efforts. With these new resources, governments and organisations can move from rhetoric to results, ensuring that disability rights are not just acknowledged but actively advanced.
To explore the databases and learn more about the Disability Data Initiative, visit https://www.disabilitydatainitiative.org/
For more information please contact:
Dr Bradley Carpenter
SAMRC Gender and Health Research Unit
Bradley.carpenter@mrc.ac.za
Or
Yolanda Phakela
SAMRC Corporate and Marketing Communications
Yolanda.phakela@mrc.ac.za