Developing ADLib: Co-producing accessible qualitative data collection tools with learning disabled researchers and participants

<p>Co-production is a collaborative process in which researchers, communities, and other interested parties work together to create knowledge and solutions to problems in society. Everyone involved in co-production is an equal creator and sharer of knowledge, and everyone’s perspective is combined to shape a shared understanding of the topic. In learning disability (LD) research, co-production is particularly important because it ensures that research is done with and for people with a learning disability. By engaging in co-production, the creation and sharing of knowledge will better represent the priorities of the community, and be more inclusive and accessible to their preferred modes of communicating and being. This collaboration helps address the longstanding “epistemic injustice” experienced by people with learning disabilities, whose knowledge and perspectives have often been overlooked or undervalued in research. This paper begins by introducing the Accessing Disability Library (ADLib). We then describe our multi-layered process of co-production on an 18-month ESRC-funded project focused on developing sustainable data infrastructure to support researchers in meaningfully including LD children and young people in their work. We present this process in four stages: (1) building the co-production team; (2) co-producing an informed consent approach; (3) co-producing data collection tools; and (4) co-producing the library. Comments and reflections from members of the co-production team are woven throughout the paper. By sharing both the challenges and successes of adopting a co-production approach in learning disability research, we hope to encourage other researchers in the field to move beyond tokenistic consultation. In doing so, we aim to support a shift away from epistemic injustice and towards more collaborative, inclusive research infrastructures.</p>