• Focus on Disability: A chance to fill the data gap

    Sue Coe


Speed read

  • Disabled people are often excluded from data gathering, and this hinders decision-making

  • Disability awareness training and accessible facilities and surveys are key

  • The debate on the post-2015 development goals offers a chance to boost inclusion

A recent report by the UN Economic and Social Commission for Asia and the Pacific says improved statistical capabilities — especially in developing countries — are central to the post-2015 global development agenda. It argues that better statistics will help governments make more effective decisions.
The need to understand underlying reasons for poor health is cited in the news article on the report as an example of where statistics can inform decision-making and resource allocation. This is a laudable aim — but only if everyone is included in monitoring.
Many disabled people are not. Inaccessible buildings or communications and discriminatory attitudes often exclude them from accessing health services where these data would be recorded. I have seen many examples, across Africa and Asia, of disabled people suffering because they can’t access such services.
The implications go beyond healthcare and local record-keeping. Last week, the UK parliament’s International Development Committee inquiry on disability and development raised the data case for disability inclusion. [1] If disabled people are not routinely included in statistical collection, policies and resource allocations will be inappropriately made.

“Questionnaires should use accessible language and communication formats. Questions should be phrased so they don’t ignore or exclude issues pertinent to disabled people.”

Sue Coe

One inquiry witness said his organisation has to report data to DFID on gender and environmental impact, but not disability — even though the organisation’s mission is to work with disabled people.
In the news item, a UN statistician says there isn’t consensus on how national statistical capacities should be measured. The debate on the post-2015 development goals is a great opportunity to ensure that statistical systems are inclusive of people with impairments, and involve disabled people in data collection processes.
There are simple ways of doing this. For example, questionnaires should use accessible language and communication formats. Questions should be phrased so they don’t ignore or exclude issues pertinent to disabled people.
People collecting data also need disability awareness training so they not only avoid excluding disabled people in surveys where local stigma prevents their participation, but also proactively include disabled people. In my experience, authorities responsible for delivering goods or services will not consider disabled people in their decision-making equation — even where the data show it’s important to do so. 
For example, the landmark World Report on Disability collated the best data evidence about disability and its impact on millions globally, but this has affected few aid agendas yet. [2]
Health facilities where data collection happens should also be accessible — considering the needs of people with sensory, intellectual as well as physical impairments. And decision-makers must commit to including disabled people in their plans and resource allocations.
Sue Coe has worked in international development for 25 years across Africa, Asia, Europe and the Middle East. Now a development and disability inclusion consultant, she previously worked for World Vision, Practical Action (formerly ITDG), VSO and Action on Hearing Loss (formerly RNID). Coe can be contacted at [email protected]