Involving disabled people in research

For this installment in our series on involving ‘seldom-heard’ people in research, we have picked a big topic: involving disabled people in research. To help us steer our way through the complexities of this topic, we roped in Gordon McCullough, CEO of the Research Institute for Disabled Consumers (RiDC). RiDC runs a whole range of research projects with its consumer panel of over 1,600 disabled people. We had a chat with Gordon about how to get it right and how to avoid the pitfalls.

Community Research: (CR) Hi Gordon – thanks for joining us. We know that your work almost always involves disabled people. Why is it so important that we do involve disabled people in research?

Gordon McCullough (GM): When we’re looking at how to improve products and services that are used by disabled people, we must involve disabled people. Even if you’re an (non-disabled) independent expert who knows something about disability, you don’t have the credibility or legitimacy of someone with lived experience. Unless you involve disabled people, you can’t truly understand when a product or service is not accessible. ‘Disability’ is sometimes tacked onto research briefs, but it’s also important to see a disabled person as someone with agency and a voice who can actually help shape things, and not just as a research ‘subject’.

CR: We recognise that ‘disabled people’ are not a single well-defined group, but have a huge range of conditions, experiences, perspectives and needs. One of the particular difficulties concerns language, definitions and terminology. What’s your perspective on how we talk about disability to ensure disabled people (or is it ‘people with disabilities’?!) feel included?

GM: You’re right – language and terminology are very sensitive. For someone who is disabled, language defines them and shapes how they see the world and how they are seen by the world. Initially, I was of the opinion that – regardless of how you define someone – the important thing is the outcome: that we want to make a difference and make the world more accessible and more inclusive. But I’ve changed that view.

It’s really important that you listen to how people like to be referred to. I think people are held back by a fear of saying the wrong thing, or they want to avoid having important conversations with people on their terms. If you want to have open and honest conversations with people about their lives and how their lives can be improved, you sort of need to get over that and speak to them as a person, not as a person with a disability. Also, if you don’t get the subtleties of the language right, or if you use euphemistic language, you lose trust. Our panellists trust us to understand that they are a person first, and are disabled by the world they live in, not as someone with a disability or a deficit. So yes – we talk about ‘disabled people’, not ‘people with disabilities’. Oh, and we never describe non-disabled people as ‘normal’!

CR: And what about the practicalities of involving disabled people in research? A lot of researchers want to make sure that their research is inclusive. In days gone by this meant just making sure the venue was accessible and had an alternative to stairs! These days, we are using remote and online methodologies too. What do we need to be thinking about?

GM: If you do it well, you create the right environment to enable people to contribute, so you get the most out of people. You obviously need to go through all the usual considerations like accessibility of the venue, whether there is BSL and so on. All these are standard considerations, but they do still get forgotten.

We often theme workshops by disability. Although this runs the risk with ‘groupthink’ and people not hearing a wider perspective, it does makes it easier to meet people’s needs and manage from a practical point of view.

With the online research, there are actually advantages for some disabled people, for example, if it means they don’t have to travel. However, others do need face-to-face. So ultimately, a hybrid model might be the best way forward.

And then there are some things that we wouldn’t know about without speaking to disabled participants, particularly with invisible disabilities. For example, we know someone with a brain injury who can’t concentrate for large chunks of time, which means we need to build in regular breaks. It’s just about asking people and not feeling awkward talking about this.

CR: What about sharing the findings from research with disabled people? We try really hard to think about how we can help non-disabled audiences connect with and understand the views, experiences and needs of disabled participants. As you mentioned, it can be hard for us – as non-disabled people – to have the credibility and legitimacy to present those views.

GM: It’s very easy to go down a tokenistic route, adding quotes from disabled people on top of what we found as professional researchers just to add flavour. This partly happens because the majority of researchers aren’t disabled and don’t have that lived experience. On one side, that means we don’t bring a bias to the research, but it also diminishes our legitimacy to talk about this. Ultimately, we need to be mindful of how we can make sure that our findings are grounded in the view of a disabled person foremost, and that the voice of the researcher doesn’t dominate.

There are ways you can do it. Every year we have a research exchange, where we bring together some of our panellists with some of our clients as well so they can get to understand each other’s perspectives. And we have previously used video to bring disabled people’s experiences and views to life.

However, I don’t think we’ve necessarily got it right yet. Research should be the voice of the disabled person first, describing the problems that they’ve had, with much more of a narrative from the perspective of the individual. That’s the ultimate goal.

CR: Thank you so much for your time and sharing those pearls of wisdom, Gordon. We agree – involving disabled people right through the lifetime of a research project is definitely the goal we should all be striving for to help create a more inclusive and accessible society. I think we’d both welcome more discussions with organisations about how to make this a reality!

This article is based on a conversation between Gordon McCullough and Community Research in June 2020