Public attitudes towards learning disabilities (LDs) are generally reported as positive, inclusive and empathetic. However, these findings do not reflect the lived experiences of people with LDs. To shed light on this disparity, a team of co-researchers with LDs created the first online survey to challenge public understanding of LDs, asking questions in ways that are important to them and represent how they see themselves. Here, we describe and evaluate the process of creating an accessible survey platform and an online survey in a research team consisting of academic and non-academic professionals with and without LDs or autism. Through this inclusive research process, the co-designed survey met the expectations of the co-researchers and was well-received by the initial survey respondents. We reflect on the coresearchers' perspectives following the study completion, and consider the difficulties and advantages we encountered deploying such approaches and their potential implications on future survey data analysis.
Accessible summary
We are members of an arts organisation who support the creative talents of people with learning disabilities and autistic people.
We have been working on a research project at “The Hub” at Wellcome Collection in a team consisting of academic and nonacademic professionals with diverse abilities.
Because of coronavirus, we all had to stay home to stay safe. To carry on with our research project, we participated in 28 creative research meetings on Zoom.
In this paper and accompanying video, we will tell you how we did it. We will also tell you how we felt about moving away from “The Hub” and trying to do research remotely from home.
We hope our project has shown that people with learning disabilities can transition well to working online when there is trust and mutual respect.
Abstract
Background
As part of “The Hub” project at Wellcome Collection, a team of eight co‐researchers with learning disabilities along academics created an online survey to challenge public understanding of learning disabilities. Using creative and arts‐based methods, co‐researchers remotely co‐analysed the survey results amid COVID‐19 lockdown challenges. Here, we explore our unexpected “transition” journey from the physical “Hub” to the digital space.
Methods
We organised 20 sessions at The Hub and used audio/video/photo recordings to capture key moments. With the lockdown, we ensured that every co‐researcher had access to and support for digital technologies. Throughout 2020, we organised 28 Zoom meetings involving all co‐researchers. In June, Lilly (a multi‐media journalist and she lives by the motto striving for equal opportunities for people with disabilities and fairness throughout) and Sue (an independent Leadership Coach and Mentor) conducted Zoom interviews with the co‐research team to reflect on our transition journey. In this creative video‐form submission accompanied by an accessible report, Lilly puts together a story of how we transitioned and felt throughout this process.
Findings
We identify that trust and the social bonds established at The Hub are the key components of our transition to the digital environment. There is the tension between longing for in‐person contact and trying to make the most out of the situation to maintain these relationships. At the heart of this is the motivation to “change the world” and strive for social justice. Having time and opportunity to improve, and co‐researchers’ steady growth in confidence are equally important.
Conclusions
The determination for maintaining friendships among co‐researchers and the motivation to “change the world” overcome COVID‐19‐related challenges in continuing co‐research.
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