We were here: sharing stories of local support
People are telling their stories through mobile interviews and life journey maps. These stories can help them remain in their communities, say Sue Ledger and Lindy Shufflebotham
We are the experts on how things worked – it was us who were here.” So said Otis Robinson, one of nine people with learning disabilities who told stories of how they were supported to stay in their communities.
The Staying Local research project drew on unexplored life stories to better understand what supported people to remain local. Taking the lead from life storytellers, the project developed mobile interviews and map-making to support people who use few words to communicate to tell their stories. Life stories were analysed alongside accounts of local support from 36 others closely involved, including families, frontline staff and managers, as well as information from documentary sources.
Our article in the spring issue of Community Living (Ledger, 2019) reported what we found out about how people stayed local. In this article, we explain the project’s life story methods.
Staying local
Keeping people local is a key policy objective (NHS England, 2015). Sadly, progress has been limited, as the previous edition of Community Living showed (Jarrett, 2019). Children and adults placed at a distance often feel that it is their fault that they have been sent away – when it is the system that has failed them.
At the start of Staying Local, both authors were working to strengthen local support and prevent out-of-area placements being made in a crisis. Consultation with self-advocates, families, health and social care practitioners, commissioners and service providers made us ask: how did some people remain local?
This gave rise to Sue Ledger’s Staying Local PhD Research project. This aimed to find out what enabled people to remain in their communities through listening to those who had made it happen.
Why recover and record life stories?
Sharing stories from our past is a good way of telling people about ourselves and is important in building relationships. Yet people with learning disabilities often find it hard to share stories. Some do not use words; others experience problems with remembering dates or putting information in the right order. As people move away from their families and rely more on services or paid support, many stories are lost forever.
We explored how people could recover and share their life stories and, in doing so, answer our questions about how local support had worked for them. Life stories are important to staff, managers and commissioners if they are to provide genuinely person-centred support and help people stay connected to the people and places that matter to them.
Tracing family photos and putting them in date order
Government policy states all people with learning disabilities should be able to live in their communities. Yet we found very few accounts of local support told from their perspective. The voices of those with complex needs – at the greatest risk of being moved away – were very rarely in evidence.
Raymond (above) pointing to his old school and(top left) choosing pictures for his map
Reconstructing and recording life stories
None of the nine life storytellers had any form of life story recorded. There were significant gaps in explaining what had enabled them to stay local – where they had lived, when, who they had lived with and how crises had been resolved. The missing information was accessed through people with learning disabilities, their families, friends and support circles, in addition to documentary sources. Former staff were sometimes contacted.
Mobile interviews
We completed 14 mobile interviews, which involved walking or going on car journeys to support people to recover and share their life stories.
Mobile interviews were trialled as a means of supporting people with less verbal communication to share their life experiences. Their value first became apparent when we accompanied Lenny Smith to photograph the house where he had lived as a child. As we drove through the streets near his former home, he became very animated and pointed to one building, saying, “K Club”.
This turned out to be a former youth club for people with learning disabilities – Smith’s naming it prompted his family to remember how this club was also a source of support for siblings and parents. Being mobile enabled people with less communication to lead researchers and physically point out places of significance. We decided to use mobile interviews with all participants – they were equally productive with highly articulate people.
We gave people cameras; they took their own photographs or we took them on their behalf. The subjects included places they had lived, schools, playgrounds, friends’ and neighbours’ homes, and learning disability services.
We planned the interviews once we had enough information about key places in a person’s life. Familiar buildings and places provided context to support remembering. Sharing such detailed local knowledge would not have been possible in a traditional, static interview. As we did more interviews, people became more confident in taking charge by giving directions, pointing out and leading researchers to places of interest and indicating what they wanted to photograph. Eight people suggested new places to visit and photograph.
Benito Bianchi said: “Go this way, yeah, go down there … my gardening scheme and my old house.”
Smith took a researcher by hand, led us across the road and into a park. We stood by the football pitch and he smiled. His brothers later explained this was where they played football together as children.
Being mobile meant people could show the way and point important places out
Making life journey maps
After the mobile interviews, people wanted to share their photos and stories with staff. Many staff knew little local geography so found it hard to follow the life stories people were trying to tell. Therefore, we developed a mapping tool.
Making the life maps involved choosing images and superimposing them onto street maps to show their journey. Images were loaded onto a computer with a large screen, then people chose the images they wanted. As well as from mobile interviews, pictures came from personal collections, local archives and the internet.
The maps helped improve staff’s local knowledge and find out more about people’s stories, and supported people to share and organise their information.
Otis Robinson and Raymond Sterling’s life journey maps.They are played by actors, and names and places have been changed to preserve confidentiality
Evaluation
We held focus groups with storytellers and three staff teams to evaluate the use of the maps. Storytellers said:
“We have all lost parts of our past” “It’s good to have everything in one place and in the right order.” “The maps helped me talk about the moves I’ve had.” “The map helped me to tell people about myself and my family” “It’s good to choose my own photos.”
Staff said:
“Case files concentrate on diagnosis, treatment and support, so we don’t know these stories.” “The maps and stories highlighted the things we have in common, like losing a parent, rather than the disability.” “We don’t know much about people’s backgrounds. The maps helped people tell us about this.” “It was great to see photos from people’s pasts.”
Life story accounts from people with learning disabilities – including those with high support needs – help us identify patterns of support and services in the lives of those who stay close to home. As hundreds of people continue to be moved away from familiar areas, they make an invaluable contribution to understanding what we need to do to stop this.
Mobile interviews and life journey maps support the recording and sharing of life story information. Without a recorded life story, the extent of people’s networks and attachment to the local area are at risk of remaining hidden, leaving people more vulnerable to being moved away.
Life journey maps and the stories in them are a powerful statement of local belonging and are a way to support to people to state their right to stay near the people and places that matter most.
As Robinson observed: “We have all lost part of our past … That is not right. Your history is what makes you who you are. It’s very good to have it here like this. It belongs to you.”
Names and places have been changed to protect confidentiality, and pictures are posed by actors Paul Christian and Rufaro Asuquo from the Access All Areas theatre company
References
NHS England (2015) Building the Right Support. Jarrett S (2019)
The sorry failure of an ambitious plan. Community Living. 32(3): 10-11
Ledger S (2019) Stories show the way to stay home. Community Living. 32(3):12-13
