Disability and Data: from Marginalisation to Empowerment
During the UN Data Forum in South Africa, which took place between 15th-18th January 2017, we raised awareness about the need for disability-aggregated data.
Data is power
Data is power; everyone, including governments, uses it to allocate resources. So it is a major worry when people with disabilities – including school-age children, those living in remote villages, and those looking for jobs – are overlooked in official statistics. The sad truth is, millions of people with disabilities, of all ages and all walks of life, are simply not being counted. Who are these people? Where do they live? How old they are? Do they have access to health services? What about school and other education? Are they in work? Are they being treated as equal members of society? In too many cases, questions like these remain without reply. The UN Data Forum in Cape Town, South Africa, was a great platform for data experts and disability advocates, including Light for the World, to come together. We joined with partners including the International Disability and Development Corporation and the International Disability Alliance to call for disability-aggregated data and research to ensure the voices of people with disabilities are heard.
Why is there little data on people with disabilities?
There are two main reasons for the lack of data on people with disabilities, according to the Conference of States Parties to the Convention on the Rights of Persons with Disabilities. Firstly, disability is hard to define and measure. Secondly, people with disabilities have not been prioritised in policy making.
Why does it matter?
This matters because resources are not being allocated where they are most needed and many people’s voices are not being heard. "One example can move emotions, but response programs are moved by data. Data is crucial towards making education and development programmes disability-inclusive and lifting people out of poverty,” explains Nafisa Baboo, Light for the World’s Inclusive Education Advisor.
Has there been any progress?
Through the active participation of disability organisations, like Light for the World, in major policy decision making processes during the past few years, a big step forward has already been taken. One example is the adoption of the UN Convention on the Rights of Persons with Disabilities. Using the motto “Nothing about us, without us”, the Convention defines core principles of non-discrimination and inclusion of people with disabilities worldwide. The Convention helps ensure people with disabilities are no longer viewed as objects of charity but as equal and active members of societies. “The Convention has changed our language—from marginalisation to empowerment, from discrimination to inclusion and from disability to ability,” explains Light for the World’s Senior Advocacy Officer Yetnebersh Nigussie. Tools for improving data collection on disability, such as the UN Washington Group on Disability Statistics, have also been developed. They provide a short set of questions to better measure and identify disability.
So what next?
Despite major steps forward, like the UN Convention, there is still a long way to go to collect the right data on disability which will ensure the voices of people with disabilities—especially those in low income countries—are heard. Light for the World is continuing to work towards this goal. In Burkina Faso for instance, we have started an initiative to ensure that people with disabilities are included into the national census which will take place later in 2017.
Watch this space!