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Including people with disabilities in research

So that’s really about the principle of nothing about us and without us. So let me give you a scenario. You’re at an event, and a group of people are talking about, say, skydiving. You happen to be a skydiver and you think, oh, you’ve found your people, right? So you quickly realise that, while this group you’re talking to have attended skydiving events and watched it, and they know a lot about skydiving tactics and skills, nobody has actually been skydiving. Yet nobody seems particularly interested in your experience of skydiving. Even though, quite honestly, that’s the main part of it.
Now, imagine that a group of people are making decisions that affect your life, how much support you get with the additional costs you face because of your disability, or what’s the best way for you to learn something based on your impairment? And that those judgments are based on evidence that you’ve never seen and conclusions that do not incorporate your experience. And OK, some will say, look, we’ve surveyed x number of disabled people, spoke to x number of disabled people in focus group discussions. But that’s not full participation. That is box ticking. Because a lot can be lost and changed between the data collection and in analysis and interpretation stage of research.
But what nothing about us without us means is that disabled people are present throughout the lifecycle of evidence generation. And it’s crucial for us to do this, to be fully inclusive of persons with disabilities. There’s been such a history of non-disabled people doing things to or for disabled people. And really, it’s past time when we should have disabled people involved either as partners or participants in the research. Better still, as researchers themselves. Maybe as people who commission and manage research projects. We’re quite capable of it. So please, join with us in partnership to make this happen. If you include people with disabilities right from the beginning, then it enables you to have a different worldview, a different perspective.
And that can sometimes change or guide the way you develop questions. And I think it will enable you to have a greater depth and breadth of analysis. It’s also really empowering for people with disabilities to be engaged in the research process from the beginning because it helps to validate our experiences. It builds trust. It also leads to acceptance of research results. It builds new friendships, new networks. And also there’s that idea of making people feel confident and valued. Look, I really believe that any evidence that we need to generate on disability inclusion cannot be really valid unless we consult with persons with disabilities from the early beginnings of even defining what the research question is.
I always believe it’s not the question that whether we should or not. The question is how we would do it?
So for me, having things that are accessible so that– because I don’t– I’m deaf. So that can make, sometimes, events are not always accessible. So dissemination events sometimes I can struggle with because I can’t hear particularly well. The coronavirus, for example, it’s changed the way we do research. It’s making us lean more on remote methods, which is challenging in many settings in the world. Because in some contexts, people with disabilities have less access to technology. So these remote data collection methods are challenging in terms of their inclusiveness for all persons with disabilities. And I was part of a team with the WHO in Palestine.
So they sent to the Ministry of Health a formal letter with my name and saying I’m their lead researcher, I’m going to visit them. And the moment I went into the prime minister’s office– the moment he saw I’m a wheelchair user– you could sense, you know, this perception and attitude that, you know, his face spoke more than his words that he was like, already undermining what I will do and questioning whether I will do it or not. Of course, with time, that changed but that also something we need to be cautious about. And we need to open up opportunities for researchers with disabilities to have the chances to demonstrate their capability of being researchers.
As a researcher, myself, I’ve faced a number of challenges, including mobility. For instance, I’ve had to go to places that have stairs, they don’t have working lifts, but then your target group is there. For instance, it’s a big hospital in the capital city, you have to go up the stairs to go to a clinic, to go ahead and interview clients. I remember a really fantastic interview, where it was in Zambia in Lusaka. And the guy that we were interviewing, he lived at such a rubbly, sort of side road track that I didn’t think I could get down there with my wheelchair. And I couldn’t. And my co-researchers and driver took me– literally frog marched me– by each arm.
They carried me– my feet were sort of waggling on the floor– through down the street market and into this booth– small booth– smaller than this room I’m sitting in. And this disabled guy got a mobility impairment. So yeah, one of the things he said was, why do you want to interview me? Why have you come all the way from London, professor, to interview me? But his data was brilliant, his interview was fantastic.
We, as persons with disabilities, we feel that we can be partners in research as opposed to being treated as objects. So we can have space as researchers, as respondents, and as consultants. Having people with disabilities in your research team, as enumerators, as people leading focus groups, that can also make quite a difference. If you’ve got particular experiences that you share with your respondents, then that can help. That can enable your respondents, your participants, to feel a little bit more comfortable, perhaps to trust you a little bit more. Make disabled people your starting point within the disability research process, so particularly for decision making.
We always have a starting point where we ask the question to our DPA partner, how would you like to work with us? What would you like to get out of this research for your organisation? So that question happens at the starting point, and it happens every subsequent stage. I remember once when I worked with research groups of youth who were disabled and non-disabled on the research about civil society engagement between Palestinian civil society and the communities of civil society in Israel. It was a very political research, but the most important learning I got from that was– and the most interesting element was the analysis of the data. Because we really wanted them to own the analysis.
And, of course, it took longer time, but in the end, it was very exciting for them the moment. They started to group thematic– you know, common thematic areas, and they had to negotiate what are the priorities. And that, itself, I saw the change of those groups in terms of transforming the data and the findings into action later on. From my experience, what really works are the participatory approaches, because by default, you’re including everyone.

In this step, you will hear from researchers with disabilities Professor Tom Shakespeare, Florence Ndagire, Mark Carew, Lorraine Wapling, Queen Seketi, and Ola Abualghaib as they share their perspectives on the importance of including people with disabilities research that concerns them.

The concept of “Nothing About Us Without Us” is raised – which is a useful slogan that describes the idea that no policy should be decided without the full participation of members of the group affected by that policy. The same applies to research. It is important to reflect on this throughout the course as we learn about different research methods used to gather evidence on disability.

Enjoy hearing their perspectives on how and why people with disabilities can be included throughout the whole research process.

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Global Disability: Research and Evidence

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