Researching people’s experiences of disability is important. It can help public bodies, like the NHS, better understand the needs of people living with disabilities and help them shape services accordingly.
Yet research survey questions are often informed by pre-existing understanding – or ‘conceptual models’ – of disability. It is not always clear what assumptions underpin the questions, nor if this impacts the answers people give.
At NIHR ARC North Thames, we have been exploring this with people living with disability through our award-winning Understanding Disability Research project. We were curious to know: of the huge number of survey questions that exist in relation to disability, which questions can be linked to different ‘conceptual models’ of disability? And how might this influence the ways in which people with disabilities answer these questions.
Bringing lived experience into disability research
As part of this work, we worked with members of the public who have lived experience of disability to try to answer this question in a series of workshops. We explored the medical, social, and biopsychosocial models of disability and how they might shape the question wording and answers.
Karl Leowe was one of these participants, and below he shares his reflections on his involvement in the work.
Thanks for talking with us, Karl. First it would be great to hear: Why were you drawn to participate in this project about Understanding Disability?
The project was one that really resonated with me and my passion at that time.
Becoming disabled through a motor accident as a young person brought a lot of changes in my life. It is something I was not prepared for and it changed my outlook on life. Projects like this – and all the other things that I have channelled myself into – serve as a purpose for the second life that I have today.
There’s this resilience that I have now to talk about disability, especially for young people. I can help them understand that it is not the end of their life – that who they are still makes sense, and there is also a whole lot more they can do with themselves, you know?
The Understanding Disability project was one of those avenues for me to come up and talk about my experience. I could use my experience to shape the project so that it could be helpful and impact people.
It sounds like you contributed a lot. Did anything stay with you about the experience?
I learned a whole lot of new things on this project.
From my experience, disability was something that I viewed as exclusively mine. I did not think about how it relates to my social environment: the people around me, interactions with support systems, all of that.
Also, the representation in the group was diverse. So, I really liked seeing people bringing new perspectives to the group.
That gave me a lot of insight about how different people from different cultures might perceive disability. Some may conceptualise disability from a medical perspective where it is just seen as a physical impairment. Some people may see it from a social model, where it is more about your environment and experiences.
Given what you have contributed and got out of the project, what impact do you hope it will have?
I think the impact that we hope that this project will have is to help shape understanding of disability more broadly.
Also, we want there to be a repository of all questions about disability, stored with information about those questions and how they have been informed.
That way, you will be able to help people ask the right questions when you are interacting with disabled people. Because if you are asking the right questions, then you are getting the right answers.
Explore our research summary feature
Read Karl's interview and further feature pieces about this work in Understanding disability research: How our questions shape our answers