Can we publish inclusive research inclusively? Researchers with intellectual disabilities interview authors of inclusive studies

Abstract

Accessible summary We are a group of 17 inclusive researchers. Some have a disability, some work in the university, and some are support workers. In this paper, we interviewed 11 people who wrote inclusive research to find out what they thought. We asked how do you write inclusive research? Then, we asked two more questions: how were people with intellectual disabilities included in writing inclusive research? And, what got in the way of people with intellectual disabilities being included in writing inclusive research? We found that inclusive research is a process of learning together: listening and including people's experience of disability. The main finding was that writing and publishing inclusively in peer‐reviewed literature was hard. Few researchers knew how to write or publish with people with intellectual disabilities. It will need more research to figure out how best to include people with intellectual disabilities in writing up studies. Abstract BackgroundThis study aimed to explore how researchers with intellectual disabilities were involved in writing up and publishing inclusive research, particularly in peer‐reviewed journals. It was conducted over a year by members of the Centre for Disability Studies Inclusive Research Network representing 17 co‐researchers (with intellectual disabilities, university and support agency staff) doing research together. Materials and MethodsThe research focused on facilitators/barriers to inclusive research. The main research question was as follows: “how do you write inclusive research?” As in, what did authors who had written inclusive research articles find helped people with intellectual disabilities get involved in the publication process? Also, what, if anything, got in the way of people with intellectual disabilities being involved? The group interviewed 11 university scholars with varied experience publishing collaboratively with people with intellectual disabilities (one self‐identifying as disabled). Content analysis identified common themes. ResultsFor the participants, inclusive research meant listening to and supporting people with the lived experience of disability. Researchers encountered numerous challenges in publishing, linked to what they perceived as “complex” and “unfair” universities, systems which governed funding. Instead of peer‐reviewed articles, inclusive teams created many other outputs and focused on outcomes. ConclusionsThe main finding was that writing and publishing inclusive peer‐reviewed literature was prohibitive. It would appear that those working in inclusive research are only at the start of devising ways to include their co‐researchers with intellectual disabilities; it will need more research to articulate common strategies to include teams of people with intellectual disabilities in joint publications.

The Two of Us project: An exploration of the relationships of people with intellectual disability in different social contexts

“…While the introduction was mainly done by Seren, most of the article was written together. It is rare that researchers with intellectual disability are included in the writing process to this extent (Riches et al, 2020; Strnadová & Walmsley, 2018). Unfortunately, when it came to making revisions, we did not have the time to fix everything up together because we were no longer working together at CDS.…”

“…Researchers have different ideas about whether it is important for people with intellectual disability to be involved in writing up research results. Some say that people with intellectual disability should be involved in every step of research and some say that people with intellectual disability should only be involved in the steps that are meaningful to them (Riches et al, 2020). When researchers with intellectual disability are included in the writing process, they often just give feedback on what an academic researcher wrote or have some quotes from them included in the article (Riches et al, 2020; Strnadová & Walmsley, 2018).…”

“…We decided to write together, using the word ‘we’ throughout the article to show that we did things together. A lot of the time this is not done in inclusive research because it is a lot more time consuming (Riches et al, 2020; Strnadová & Walmsley, 2018). Seren wrote the introduction and read over it with Jack to get his opinion about whether the information was easy to understand.…”

Developing visual tangible artefacts as an inclusive method for exploring digital activities with young people with learning disabilities

“…Inclusive research should include participants in the research process as coresearchers, where keywords are collaboration, mutual learning, knowledge sharing, negotiation (Burke et al, 2003; Flood et al, 2013; Nind & Vinha, 2014) and support (Keyes & Brandon, 2011; Seale et al, 2018). A collaboration among people with and without learning disabilities may mean collaborative data collection (Schwartz & Durkin, 2020), coanalysing (Nind & Vinha, 2014) and/or codissemination (Riches & O'Brien, 2020). Fulfilling these standards can be challenging, and the researchers and participants must cooperatively create a democratic ‘third’ research space (Nind & Vinha, 2014; Seale et al, 2015).…”

The digital communities of young individuals living with cognitive disabilities: Mapping the use and meaning of digital technology with capable youth

“…In addition, inclusive research has to be collaborative between the individuals living with disabilities and the researchers without disabilities, for example, by using techniques of co-researching, mutual learning, negotiation and supportive roles (Burke et al, 2003;Chappell, 2000;Flood et al, 2013;Goodwin et al, 2015;Keyes and Brandon, 2011;Nind and Vinha, 2014;Riches and O'Brien, 2020;Schwartz and Durkin, 2020;Seale et al, 2018). The literature also emphasises that training the individuals living with disabilities who are involved in the study to become coresearchers has proven to be beneficial in many research settings (Mikulak et al, 2021;Tuffrey-Wijne et al, 2020).…”