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When is counting important?

Gwynnyth Llewellyn and Eric Emerson describe why it is important to count disability at national and global scales, and how this data can be used.
MAN: FutureLearn. [THEME MUSIC] UNSW Australia. When is counting important?
GWYNNYTH LLEWELLYN: The question of whether we should count the number of people with disabilities there are in the world, well actually, we know. We don’t have to go and count, because the World Report, which is 2011, WHO and the World Bank, quite categorically was able to tell us that around 10% of any population, it varies between about 10% and 15%. 10% to 15% of any population will be people who have an impairment, such that, in interaction with the environment, they’ll be disabled. Because that’s what being disabled is. It isn’t something you have inside yourself.
It’s actually if you have an impairment, or a health condition, that’s likely to last 6 months or more, and then in interaction with your environment, that you are disabled by that. So we know those figures. However, all around the world, people think they have to go and count. And actually, there is a good reason why. Because in many of the less, lower resource settings, people have done surveys. The way they’ve done surveys about people with disabilities, they’ve already predetermined what they think disability is. So then they do a survey. And they find there’s only maybe 2%, or 5%. Well it’s actually not accurate, because as I’ve just explained, it’s the interaction between the person and their environment.
So yes, we do have to count. But just counting numbers according to particular conditions that people think are disabilities, doesn’t work. So what WHO, the World Health Organization has done, is develop what’s called, The Model Disability Survey. And what it does, is actually ask many, many, many questions, which allows you to understand what is the interaction, and what particular environments people are disabled in. So that’s now being rolled out in countries all across the world. Which will give us a much better idea of the living circumstances of people with disabilities. That’s the reason we count, to know what inequities there, at the moment, is in their lives. And so we can monitor over time whether in fact those inequities change.
ERIC EMERSON: A lot of the work that we’re currently doing both in the UK and here in Australia, could be described as using big data. First, it provides the kind of evidence that governments want, and are willing to act upon. Because the first question, whenever we’re lobbying government for doing something, is well, what percentage of the population is going to be influenced by this? And what big data can give, is the kind of evidence that people in the treasury will view as credible evidence. And that’s one of the main reasons we’re doing this, to be honest. We can say something about the situation of people with disabilities in Australia, in a way in which, really, people can’t argue with.
Because the information we’re using is government funded, very large scale surveys, which are designed to precisely provide information about what’s happening to Australians. And we do the same in the UK. So if the aim of research is to influence policy, and for me, that is the aim of research, is to influence policy, then big data, or using big data, is a very useful weapon to have in the armoury, as it were. You need good arguments, but you also need information which is seen as credible by politicians, and seen as credible by senior civil servants. And big data is generally seen as credible data. The second reason we use it, is because it’s there.
And a lot of time and money has been invested in collecting information, in very large scale surveys, in censuses, in information systems. And to the extent that using that information can answer important questions, it just makes sense to use it. rather than do a new study which collects the information, actually the information might already be there. And in a sense, we have a responsibility to use information which is there, if it will answer the questions that we want it to do, rather than reinvent the wheel over time.
And I think the third reason that we use big data, is a bit more technical. It allows us to answer some kind of questions, that it’s really, really hard to do without using big data. So for example, we used big data. We used information on every school child in England, 5 million of them, to try and untangle what’s the relationship between ethnicity, poverty, and risk of intellectual disability. We couldn’t have done that. We could just not have possibly have done that any other way than using the big data that was already collected by our Department for Education.

In this video, several expert researchers explain why it is important to count disability, and why it matters how disability is classified.

Of course, statistics are about more than individuals. National data can help countries to better support the disabled members of their population. In fact, for countries that have ratified the UN Convention on the Rights of Persons of Disabilities, there is an obligation to gather information about people with disabilities:

Article 31. 1.
States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention.
Statistics tend to be “top-down” — that is, they are about finding out the underlying patterns behind large numbers and the general evidence that this provides. But being counted is also something that happens to many of us all the time — whether through automated monitoring of social media usage, email surveys or customer feedback.
In some cases, disability is “taken notice” of, and sometimes ignored. But this may mean that services are poorly designed for people with disabilities.

Talking points

  • When is it important for data about individuals to be recorded?
  • Who should make the decisions around what data is recorded and how?

Some additional resources are provided in the See Also section below.

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Disability and a Good Life: Thinking through Disability

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