Disability Data: Does it add value to the cause of inclusion?

hundreds of lego people, white bodies with yellow heads are lined up like soldiers on paradeThe Australian Department of Foreign Affairs and Trade (DFAT) oversees the funding of Australian Aid projects and has has produced guidelines on universal design for all Australian aid projects.

In a world where a high value is placed on statistics and economics, when it comes to people with disability questions are asked such as, “So how many people are there with disability anyway?” and “Should we bother about a few people when there are so many other things to think about?” These questions also arise at home here in Australia. So what more could statistics add (or detract) from the inclusion agenda? What kind of statistics might matter most? Who is the subject of such data and how is it collected? Who is best placed to collect such data? And who decides on the questions to be asked?

Deborah Rhodes addresses some of these issues in a thoughtful discussion paper “Monitoring and Evaluation in Disability-Inclusive Development: Ensuring data ABOUT disability-inclusive development contributes TO inclusion”. Elements of this discussion paper provide food for thought for both development projects and policy development here at home in Australia. There are some key questions at the end of the paper that should be asked as there are many unspoken assumptions that all data is good data:

  1. What is the most important purpose for collecting data?
  2. Who is determining the reason for the data collection?
  3. What are other purposes for collecting data (that may or may not need to be prioritised)?
  4. How can we ensure that the data we collect is relevant to the policy, programming and attitudinal changes that people in the specific context seek to achieve?
  5. What information will tell us about the specific changes involved?
  6. Who will actually benefit from the information generated?
  7. What is the opportunity cost associated with data collection, i.e. would funds needed for the survey be better spent on raising awareness or responding to local priorities for inclusion?
  8. Will the data help to raise awareness of the costs of exclusion?