Making memory sites : extending opportunities for people with profound and multiple learning disabilities to participate in life story work

Abstract

People with profound and multiple learning disabilities (PMLD) experience considerable difficulties communicating and develop idiosyncratic repertoires of communication that are understood and interpreted only by those closest to them. It is difficult to access their stories or to find out how they are living their lives via orthodox life story research practices and consequently their experiences remain hidden from history. This practice-led research was driven by the need to address a lack of methodological tools that enable the inclusion of people with PMLD as participants in life story work. The research sought to contribute to: 1. An understanding of the barriers, challenges and benefits of doing participatory life story work with people with PMLD. 2. The development of a range of methods that invite people with PMLD to participate in life story work, with specific, but not exclusive reference to rich media and digital tools. 3. A broader understanding of the every day social and cultural lives of three adults with PMLD. Researching alongside three adults with PMLD and their circles of support for an extended period of time using a qualitative mix of life history and ethnographic methods - including the shared examination of personal archive materials, participation in every day activities and interviews with close family and friends - revealed opportunities for them to engage in their pasts. Barriers of access and communication were identified and addressed. The deconstruction of narrative norms together with framing participatory life story work within a cultural, as opposed to an individual, context invited a reinterpretation of what it means to participate in life story work. Thematic analysis of the rich body of material generated by the project identified that opportunities to participate in life story work were dependent on particular qualities of people, time and environment. Participation in life story work was found to be beneficial to the participants with PMLD because it challenged perceptions, demonstrated their value as people living socially and culturally rich lives, provided a platform for shared remembering and was a catalyst for new narratives. The findings indicate possibilities for including people with PMLD as participants in other research areas including mental health and wellbeing.