“Please send me the link for tomorrow, María” human-rights based participatory research with people with learning disabilities via Zoom

Abstract

Background

This paper describes the experience of conducting a co-researched project with people with learning disabilities in Madrid, Spain, during the COVID pandemic and lockdown. I discuss the advantages and limitations of working online and challenges encountered while coordinating and facilitating the research.

Methods

Our research project was on the impact of COVID on the lives of people with learning disabilities, which the eight co-researchers chose. As part of my PhD, I offered my services as researcher to work together with persons with learning disabilities. Eight people took up my offer. We worked together from January 2021 to March 2022 virtually and I recorded this experience. I have written the paper, but as part of my co-researcher agreement, I have shared my reflections and work with my co-researchers, and we have co-written a section to share our findings.

Findings

In this paper, I discuss the advantages and limitations of working online, challenges I encountered while coordinating and facilitating the research and the work together. Remote work enabled the group to work on a biweekly basis and with members from different parts of Madrid. It saved people time and effort getting around town, yet we had to introduce express times and spaces to socialise and create a working relationship that is less natural than during in-person interactions and breaks. During our fieldwork, we found that the pandemic had spurred the access to digital devices and programmes, but people may still be reliant on their environment, carers or supporters to facilitate it. I included a section written with my co-researchers, in which we reflect together on the experience of working online and how we reached out to their peers during our fieldwork. We identified limitations due to our online research methodology such as lack of owning a digital device, the difficulties having access to a private space from which to connect online and the joy of meeting other people to exchange experiences.

Conclusion

Human rights based participatory research can be done online. There are different ways of overcoming barriers to participation. However, there are people with no access to the internet or without digital skills that are being excluded and we must ensure that we reach out to them as well.