Inclusion counts — why quality data matters

Dr Mark Carew

Dr Mark Carew, our Senior Researcher, talks about the impact of quality disability data.

The portal highlights that people with disabilities are being still left behind in many areas. It also shows that the availability of high-quality disability data is growing and will continue to do so.

Around 15% of the world’s population is made up of people with a disability. So you’d think there would be a large amount of good quality global data available to help us understand barriers and limitations. Sadly, this isn’t the case. Such data is essential in ensuring people with disabilities are not left behind. This is particularly important as work continues globally on the 30 Sustainable Development Goals. 

Existing data shows us that people with disabilities are typically more disadvantaged compared to people without disabilities. We know there are disparities when it comes to access to fair and equal work, education, healthcare and social support. So, there is no question that there is still plenty of work required to address these barriers.

Current approaches

Current approaches to data collection vary globally. This makes it hard to understand the true scale of these gaps. It also means there is a lack of good quality, comparable data. This makes it more difficult to track progress.

Some studies, for example, may not capture a representative sample of people. Yet the results get applied to the entire population all the same. One consequence can be that disparities may not seem so prevalent. As a result, people with disabilities can remain under-prioritised.

Without robust disability data it also harder to steer the political agenda. People with disabilities can feel more empowered when armed with hard evidence and statistics. Data can equip them with what they need to demand change within their countries. To be inclusive within systems and societies we need mechanisms to track progress.

This way we can see when it has stalled and keep people accountable to deliver inclusion. This uses a ‘human-rights approach’ to development. The approach suggests people with disabilities have the right to participate in all development activities.

In order for this to be achieved, societies must take action to remove any barriers. Disability data is essential to highlight and track progress towards dismantling these barriers.

Counting disability

One of the biggest challenges is actually how to ‘count’ disability. Disability can mean different things to different people. There is no universal definition of who is disabled and who is not.

Likewise, there is no “catch-all” question that will fully capture the correct number of people with a disability. In fact, asking individuals ‘do you have a disability?’ often leads to inaccurate data. One reason is that individuals often do not disclose their disability in surveys due to shame and stigma.

The Washington Group Question Sets (WGQ) aims to address the need for robust, comparable disability data. They avoid directly using the term ‘disability’ or any other language that may lead to biases.

Instead, the six questions use neutral language. They also ask about an individual’s level of functioning in six areas of daily life (e.g., seeing, hearing). The methodology acknowledges that disability is an interaction between impairment and environmental barriers.

How we collect data

Leonard Cheshire has successfully been working with our partners to collect disability data by using the WGQs. We have been using the questions on our project activities during our work with the Department for International Development (DFID).

The questions themselves have helped us collect a consistent, reliable set of data. This helps show the impact projects are making. It is also extremely helpful in informing approaches to future projects. Knowledge gained from data collection also helps ensure social barriers to disability are considered from the outset.

Leonard Cheshire have also recently developed the Disability Data Portal with funding from DFID. The portal collates existing disability data from 48 focus countries. Users can separate this data on several key indicators in areas like inclusive education.

The portal highlights that people with disabilities are being still left behind in many areas. It also shows that the availability of high-quality disability data is growing and will continue to do so.

Disability Data Lab

Dr Mark Carew will be talking in more detail about the Disability Data Portal and the impact of the Washington Group Questions on a panel discussion at the Bond and Disability and Development Group’s (DDG) upcoming Disability Data Lab.

Find out more information about the event