Disability data to leave no one behind

The Sustainable Development Goals (SDGs) have ensured disability is on the development agenda. It is referenced in five goals and seven targets, and there is a clear commitment to ensuring that people with disabilities are not left behind in global progress.

This level of recognition for disability is essential as the 2030 Agenda for Sustainable Development (Agenda 2030) will only be a success if it really does ensure that no one is left behind – and that means we must focus on those at a greatest risk of being so.

There is a fundamental logic at work here:

• to ensure that everyone is included you must have data on the whole population – without it, you cannot tell who is missing
• to target policies and resources on people left behind you have to know who and where they are
• to monitor progress on inclusion you need disaggregated data – averages for whole populations just won’t do.

The good news is that effective and sustained advocacy on the issue of disability, and subsequent political interest and investment in disability data, has started to pay off. The UN Statistical Commission group on disability is larger than any other. Its painstaking work to develop internationally comparable census questions on the severity of disability has meant that we now have standard questions that can be and are applied in lots of settings and by lots of organisations.

The census questions mean better data on the number of people with disabilities and this makes the impact of disability much more visible. Significantly, the census questions seek to identify the impact of disability not in an on/off sense by asking whether somebody is a person with a disability or not, but by capturing the extent and severity of a person’s difficulty with sight or hearing, mobility, care, language. Importantly, they enable the data to be joined up.

In Uganda, we can use the disability data along with survey data to better understand the extent to which disability results in exclusion from progress. The association of severe disability and lack of education is unsurprising but still shocking.

Level of education by severity of disability in Uganda

Source: Development Initiatives based on Uganda Demographic and Health Survey 2011

The same data and method can be used to explore, for instance, if disability is concentrated in particular areas within a country, in rural or urban areas, in households with or without toilets and so on. The chart below is an example of the differences experienced in walking by region for Uganda. The same regional pattern can be observed for seeing, hearing and other impairments.

Level of difficulty experienced with walking by region in Uganda

Source: Development Initiatives based on Uganda Demographic and Health Survey 2011

So the value of standards for disaggregated data is clear, but the key issue is use. How can this data be used to ensure that persons with disabilities are not left behind? Well first it can draw attention to scale: it can help to identify places, people and characteristics that lead to exclusion. But – equally important – it can also challenge the attitudes and discrimination that keep people invisible and poor because of some aspect of their identity. For example, the blind child whose teacher cannot understand what use education would be to him so suggests that he just sits at the back of the class or goes home, or the trader whose customers insist on paying a lower price simply because she is a wheelchair user.

While there is still a very long way to go in getting consistent and complete disaggregated data on disability itself, there is another challenge to keep in mind. People have many identities and characteristics and it is often the combination of these that result in intractable exclusion and poverty.

The acid test of Agenda 2030 will be whether people in the P20 – the poorest and most excluded 20% of the world’s population – are included in progress. At a minimum we need data that is consistently disaggregated by income quintile, gender, geography, age and disability along with civil registration of births and deaths. Making sure people are visible and counted is a necessary condition for ensuring no one is left behind – and counting those people most likely to be excluded from progress is the first priority.

Read the other blogs in this series:

Why aid data needs to say more about persons with disabilities

Disability and aid spending: Can we use the DAC’s peer review mechanism to ensure aid is inclusive of persons with disabilities?