Recently, I had the opportunity to speak at the European Commission’s high-level event on equality data, where I shared Inclusion Europe’s perspective on why better data is needed for achieving equality for people with intellectual disabilities.
Data plays an important role in shaping policies. It helps decision-makers understand people’s experiences, identify inequalities, and measure progress. However, for many groups, including people with intellectual disabilities, significant gaps remain in the data that is collected at national and European level.
When people are missing in the data, they are missing in policies.
Filling the gaps
For years, Inclusion Europe has highlighted the lack of reliable information about the lives of people with intellectual disabilities. This is one of the reasons why we developed our Inclusion Indicators, which provide data on the lives of people with intellectual disabilities in key areas of life such as employment, education, and independent living.
The Inclusion Indicators help to fill important gaps in existing data collections. They show what’s hidden when people with intellectual disabilities are grouped together with other disability categories or excluded altogether from surveys and research.
However, the Inclusion Indicators were not developed as a long-term replacement of the national and European data collection.
Instead, people with intellectual disabilities should be fully included in mainstream national and European data collection efforts from the start.
The role of civil society organisations
As data collection becomes more inclusive, civil society organisations will continue to play an important role, helping to resolve important issues:
- Gaps in existing data. For example, some recent housing surveys did not include people living in institutions. Yet these are the very people who are the most in need of housing. Excluding them creates an incomplete picture and leads to ineffective policies.
- Accessible data collection. Surveys and questionnaires need to be available in easy-to-read formats, and researchers and data collectors need training on how to communicate accessibly. If questions are not understood, the resulting data will not accurately reflect people’s experiences.
- Importance of analysing data in a more detailed way. Disability is not a single experience, and broad statistics can sometimes hide significant inequalities.
A good example is employment. The employment rate of people with disabilities is often cited as around 50%, highlighting the gap compared to people without disabilities. While this is an important indicator, our Inclusion Indicators show a much more concerning reality for people with intellectual disabilities, whose employment rate can be below 10% in most countries. Without more specific analysis, these inequalities remain invisible and are not addressed through targeted policies.
Data must lead to action
Collecting better data is not an end in itself. The ultimate goal is to improve people’s lives.
That is why we will continue to advocate for policies that address the barriers and discrimination people face every day. Better equality data can help policymakers understand the challenges, but political commitment is needed to turn knowledge into action.
People with intellectual disabilities must be visible in the data, heard in the process, and included in the solutions. Only then can equality data truly support equality for all.
Inge Volleberg, Researcher