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Stories told together

Through sharing stories, people with profound disabilities and those who communicate verbally can find out about each other and build relationships, say Nicola Grove and colleagues.

When we recognise our own experiences through anecdotes, we learn from each other and build networks. Storysharing (https://storysharing.org.uk) involves finding good stories we can tell together and react to, using all the communication resources available to us.

It has been used to create enjoyable, meaningful reminiscence for groups of people with high support needs in residential homes (Harwood, 2011).
The idea was developed about 20 years ago after it was observed that staff told stories about and sometimes to people they cared for but rarely, if ever, with them.

Growing stories

Two charities in south London – One Trust (https://onetrust.co.uk) and Generate (https://generate-uk.org) – took part in a project to explore how people who communicate non-verbally and have complex needs could tell stories together with those who communicate verbally.

Two employees (Luke Ottridge and Josefina Odonkor) and two members (Gary Scott and Michael Jenkinson) volunteered from One Trust. From Generate, one staff member (Chiloshe/Chiz Kaluba) supported two young people (Kai Mavour and Rio Merrett). I facilitated the group.



We have been meeting online each week for an hour since March. Recordings of the meetings are used to evaluate sessions and plan for the next. At the start, the partners were given a Bigmack communication aid, and sessions focused on ways of communicating. We quickly established a structure.
Sessions begin with Jenkinson checking everyone is happy to be recorded, holding up an image of a record button. Next, each partner poses a question, pre-recorded on their Bigmacks.

These started as simple “What did you do this week?”, but soon developed into stimuli for stories: “What was the best thing that happened this week and what was the worst thing?” and “If you were an animal, what animal would you be?”

A main starting point was making memory boxes. We shared likes and dislikes, and some of these went into the boxes, which the two Generate advocates made for themselves, and One Trust staff made with Jenkinson and Scott.

We wanted to uncover the stories behind them. For example, football was a passion shared by Jenkinson and Mavour, who both support Chelsea, but it got a definite thumbs-down from Merrett, who had been hit in the face by a mis-kicked football and lost a tooth when she was 8.

At the end, we recap and make plans for the following week, with staff offering time and imagination to prepare, collect resources, make boxes and remind the advocates of what we are doing.

Often a story emerges spontaneously. Having a new haircut was an important event for Scott, as looking smart is central to his identity. A worker said his hair had been “un-combable”. Recording this word on the Bigmack meant Scott could provide the punchline to his own story (while touching his hair), which he did at the right moment then repeated, with everyone laughing in encouragement.

Mavour used his Bigmack to ask: “What style would you like?” to which Scott spontaneously replied: “Uncombable!”

Achieving such spontaneity is both challenging and necessary if people are to become accomplished co-tellers.

Talking to build advocacy

In peer or group advocacy, people with a shared interest support each other. Relationships need to be based on deep knowledge of each other and trust. Sharing stories enables relationships to be built naturally, and provides the foundations for tackling difficult issues.

One such issue raised early on was loneliness, which is common in people with learning disabilities. Mavour had a story for his memory box about how isolated he had felt during the pandemic. Merrett, who is a drama student, improvised loneliness by wrapping herself in a duvet and looking sad. We are also exploring stories of independence and choice.

“I really enjoyed sharing experiences with Gary and Michael, which then helped us all to tell stories together,” says Merrett. “I learnt that Gary and Michael have many interests that they were able to communicate and share with us. For a project like this to work, you need a Bigmack – and you need openness and creativity.”

Mavour says: “I have learned that Gary and Michael love coffee. When I met Gary and Michael, I would have never thought they would like coffee. For this project to work, you need trust and friendship.”

Ottridge and Odonkor have said Scott and Jenkinson look forward to attending each week – both raised arms and smiled when we discussed this.
“We have been really surprised by how successful the storytelling together has been. It’s been such fun and we really want to do more here,” says Ottridge.

Although the process is simple and intuitive, it involves careful observation, an open attitude, commitment to equality and imaginative preparation.
With the right support, people with very high support needs can share actively in telling stories – their own and those of others. They teach us how to pause and value small things, like enjoying coffee.

We are continuing to meet, now with a focus on how we can reach out to others to share what we have learned.

For more about the project or training, email info@storysharing.org.uk. Free introductory courses are available at https://storysharing.thinkific.com

The co-authors are Michael Jenkinson, Chileshe Kaluba, Kai Mavour, Rio Merrett, Josefina Odonkor, Luke Ottridge and Gary Scott. Nicola Grove is the founder of Storysharing