Why is evidence needed on disability?
Imagine that you felt unwell, and went to visit a doctor. The doctor would ask you about your symptoms, examine you, and perhaps run a number of tests. This evidence would help her to diagnose your condition. She would then select a treatment for you, perhaps medication or exercises, guided by the available evidence on what is effective for your condition. She may follow-up with you at a later date to check your symptoms again to make sure that the treatment had worked.
In a similar way, evidence is needed to understand and meet the needs of people with disabilities.
First, we need to know what the main issues are facing people with disabilities, so that they can be addressed. In other words, we need evidence to diagnose the issue. In one setting, for instance, we may find evidence that children with disabilities often don’t attend school. If we examine the evidence more closely, it may show us that children with intellectual impairments are particularly left behind and excluded. So, the problem is exclusion from school, particularly for particular groups of children with disabilities. We now know that action is needed.
Next, we need evidence on which intervention to recommend. From the above example, it is clear that actions are needed to improve school attendance among children with disabilities, in particular for children with intellectual impairments. There are many different approaches that we could take to try to solve this problem. For instance, we could offer parents money towards the costs of schooling or transportation to encourage them to send their child with disabilities to school. Or we could train teachers about inclusive education, to make the school more accessible for disabled children. Another option is to provide teaching assistants to support children with disabilities. We need evidence of which interventions are effective in order to choose between these different options. The effectiveness of these options may vary for children of different ages, different types of impairments and in different settings, and so we need evidence on these issues also. Without evidence, we are in danger of wasting resources by offering ineffective programmes, or targeting the wrong group.
There is a third reason why we need evidence on disability. Countries face many different competing needs. As an example, there may be gaps in health services, poor transport infrastructure, lack of water and sanitation, high levels of gender based violence, and so on. Yet, the amount of money available to tackle all of these problems is very limited. Governments and donors need to make difficult decisions about what services they will fund, and what they will not. Evidence is therefore needed to justify investment in disability. Investments in disability-inclusive or disability-targeted services are more likely if there is evidence to show that the prevalence of disability is high, the impacts great on the person and their family, and interventions are effective. Evidence can therefore be used to advocate for better services for people with disabilities.
In summary, it is often said “What isn’t counted doesn’t count”. We need evidence to advocate and plan for interventions for people with disabilities, in order to meet their needs, maximise their quality of life and make sure that their fundamental rights are realised. And we must also remember the adage “Nothing about us, without us!”, meaning that people with disabilities should be included, or lead, the generation, interpretation and use of the evidence.
© London School of Hygiene & Tropical Medicine 2020