There is unsettling truism in these statements: “you don’t count until you are counted” and “what gets measured tends to get done”.
This was why it was important that, as persons with disabilities, we participated in the recent second UN World Data forum in Dubai not just to be counted, but also to set our agenda based on actual data.
In implementing the Convention on the Rights of Persons with Disabilities (CRPD), states need data to draw policies on inclusion of persons with disabilities. But this data has be available, accurate and timely— and, of course, disaggregated by among other indicators on disability.
At the forum, the participants— a group of more than 20 leaders with disabilities participating in the Training of Trainers of Bridge CRPD Sustainable Development Goals — got the opportunity to learn best practices on data collection from different contexts in addition to bringing in the voice of disability in the discussions.
Data is crucial in measuring progress towards achieving Agenda 2030 whose goal is not to leave anyone behind in development.
We need data to measure the level of inequality that persons with disabilities face compared to those without disabilities, determine policy needs, design, budget for and implement policies, evaluate policies and programmes, monitor trends and track equalisation of opportunities.
For example, how much do people with disabilities use public services or access support and benefit? How many children with disabilities are in school compared to those without disabilities?
How many workers with disabilities are in formal employment compared to those without? What are the barriers? What will it take to achieve equality? This is especially important in resource constraint settings where budgets for disability inclusion are minimal.
With such data, no one person will be left “uncounted” even when it’s realistically not possible to count everyone.
For instance, during the a session on counting the excluded, the poorest and the most vulnerable who have been left behind especially in urban areas, it was quite alarming to learn that there are millions of groups of people who remain “uncounted”.
According to researchers, undercounting and those not being counted is a challenge with the most affected groups being pastoralists, the homeless and persons in institutions because they are usually not captured in national samples.
Uncounted populations miss out in programmes to advocate for implementation of the SDGs, especially on calculations on poverty. But even more important than collecting data is the need to ensure data “speaks”. Data has to be actionable to the ordinary person .
It is good that Kenya used the Washington Group Short Set of questions in the pilot census in August, thanks to advocacy by disability groups. Now, Kenya is preparing for the 2019 national census.
The Washington City Group Short Set of questions has been recommended by UN agencies, organisations of persons with disabilities, civil society and independent experts to ensure international comparability.
Data should be used to improve lives especially that of people living with disabilities, who are often uncounted, thus left behind in development.
—The writer is a disability rights activist and Fellow with the International Disability Alliance