Why do we need evidence about global disability? Expert perspective

Well, in 2011, we wrote the World Report on Disability and the state of the evidence was pretty poor back then. And we had very much hope that in 10 years it would have been transformed. But we haven’t got there yet. I know that when Hannah Cooper did the evidence and gap map on disability, she found very few solid, strong pieces of evidence. Currently, I’m doing a systematic review about evidence on CBR for mental health conditions, and really it’s still very poor. The World Health Organisation estimates persons with disability to be over 15%. That is 1 billion people with disabilities throughout the world. But the challenge with this is that we depend majorly on estimates.

And most of the countries do not have reliable evidence on persons with disabilities. With evidence about disability, there are some areas where we have really good evidence. So we know that there are lots of people who have disabilities, maybe a billion people, and that disparity has huge impacts in people’s lives. And people are excluded and left behind often. Where we lack evidence is what’s most effective about what to do about that and which interventions and programmes we should be implementing to try and realise the rights of people with disabilities and make sure that they’re not left behind.

There’s a lot of great literature out there, but very little that’s published that’s of good quality and allows for learning to be put into practise.

We need to know the incidence, we need to know the prevalence, and who is it affecting more. Is it men or women? We also need evidence on disability for advocacy purposes. We need to document evidence to inform the literature and knowledge, in terms of the capacities and capabilities of persons with disabilities. And also, we need to involve persons with disabilities throughout the design of evidence-based practises in order to promote disability mainstreaming. Evidence helps in promoting accountability and monitoring among member states. And it’s part of the obligations stipulated under the UN Convention on the Rights of Persons with Disabilities.

Sharing our experiences majorly helps, in that, people get to know what we’ve gone through because we’re the only ones who understand what happens in our world of disability. But we know where we’re going, but we don’t know how to get there. So it’s very important to understand what are the evidence-based policies. Whether it’s for inclusive education or for livelihoods. What works best to achieve our goals? There’s a big debate about the quota approach to employment. Is it good that there is a reserved quota for disabled people? What does actually make things worse? We don’t know. Depends on the setting. I think it’s recognising that people with disabilities represent a significant proportion of the population.

And that they are often missed out from development interventions, either intentionally or, more often, inadvertently. These efforts need to be evidence-based to ensure that they go beyond good intentions and into practise, which ensures people with disabilities benefit equitably from policy implementation alongside their peers. And evidence of what works is really critical to achieve them. If we try and have a policy that’s not based on evidence, we might do the wrong thing. For example, I could say, do you think we should teach young children how to swim? And the obvious thing would be to say, yes, of course, otherwise they drown.

But the evidence, which you can see in the WHO World Report on Child Injury, is that if you teach small children under the age of five to swim, they’re more likely to drown, because they have a false sense of confidence that the water is safe, and they swim more and they drown more, sadly. So there we are– our common sense view, completely wrong. And I think that’s an extreme example of, I’m afraid, what’s often the case. We don’t want to waste money on things that are not going to work. We don’t want to put people at risk with the wrong approach. The answer is understanding, as best we can, the evidence of what’s successful.

By having this research, we could then make a case, or governments, nonprofits could have the confidence to say that we need to invest more in hearing impairment. Because even though we can’t see these children, we now know that this many children have hearing impairments. There’s enough of them in these regions that we can assume that there is a certain prevalence beyond. And we can confidently move forward in that direction and be more inclusive of children with hearing impairments in our interventions. So at the start of the COVID pandemic, it became clear that people with disabilities are probably more vulnerable to mortality. Because on average, they’re older, they often are excluded from health care services, and they may have preexisting conditions.

So we sort of knew that. But recently in the UK, the Office for National Statistics produced hard evidence that show the people with disabilities are at least twice as likely– perhaps three times more likely– to die of COVID compared to their peers the same age without disability. And there’s a very big difference between hypothesising and thinking that there’s going to be an association and showing hard data. And once you show that hard data, it’s much easier to persuade people to act and to think meaningfully about how to include people with disabilities in COVID programmes.

In SightSavers political participation projects in Senegal and Cameroon, evidence was gathered on how people participated in several aspects of the political process, from birth and electoral registration through to active participation in local political roles. In fact, those responses were disaggregated by disability, status, and by gender. And the results were, in some cases, surprising, demonstrating real contextual differences between the two countries, and even within the two countries, and a really clear interplay between gender and disability. And that really showed us the assumptions that we would or could have been traditionally made and would have led to a poorly targeted set of interventions.

So the availability of that evidence, those direct responses of people’s experiences and people’s realities, has allowed for a far better targeted project and should lead to a more effective set of outcomes than would normally be the case.