As human beings, we remember and share what happens to us in the form of stories. By doing so, we connect with our friends and family, we make sense of our experiences, and we can explore how other people deal with the challenges in their lives. Because people with severe and profound disabilities cannot tell us what experiences they remember, it is often assumed that they do not need, or can’t participate in these conversations. But in fact, they can – and by helping them to do so, their confidence, communication and engagement with life events will increase.

The approach described here is Storysharing®, developed through 20 years of research and practice, and is based on telling stories together.

What you need

• Most importantly – an experience worth sharing! This does not have to be anything spectacular but can be about ordinary day to day events. For example, about losing the car keys, the lovely unexpected phone call, the washing machine flooding…
• A few props – objects, smells or sounds that help you all remember what happened. Not too many.
• A communication aid like a Big Mack is really useful, but is not required.
• The ability to have fun and enjoy telling the story together.

Guidance and instructions

1. Notice what is going on
When something interesting happens, however tiny, draw the attention of the person to it and involve them in the experience – oh no, where are my keys? I’m sure I put them down…can you help me look? Under your chair? In my pocket? Oh, HERE THEY ARE! They were in my bag all the time….

You helped me find the keys. Thank goodness, now we can go out.

2. Communicate the feelings as you recap
I was really panicking.. help help! You were laughing, you thought it was really funny ‘cos you know I do this all the time…

3. Find a prop that a person can use
For example, the keys. Give them to the person to hold and shake at the appropriate moment.
(For a story about a washing machine… a grinding noise recorded on phone or communication aid OR wet sock OR spray; for a phone call, mobile phone, picture or video message from the person.)

4. Identify any possible contributions
What can the person do to join in this story?
For example, maybe they can say words or use signs like “oh no” “keys” “help”.
Maybe they can smile or laugh at the right moment.
Maybe they can mime the actions – looking down, putting a hand in your pocket.
They can certainly be prompted to produce the keys and shake them at the right moment.
If you have a Big Mack, you could record the word “keys” and get them to press it to produce the word over and over again in the story.

5. Tell the story together
Retell as soon as possible, encouraging them to join in. “So, before we went out, we needed the keys. I couldn’t find them. I was saying oh no, where are my keys?… I’m sure I put them down. Then you helped me look. We looked under the ……chair…no keys. In my…. pocket…no keys. On the …. table…no keys…and THEN we looked in my….bag. Hooray we found the KEYS. And I was panicking, but you were laughing ‘cos you know I do this all the time”.

6. Find another listener and …. tell it again….
We tell these stories repeatedly. The more we repeat them, the more we remember. This is also true for people with severe communication disabilities. At first, they may not join in much. But if you keep going, in a very naturalistic way, they are likely to enjoy taking part. New listeners who don’t know the story are important. They provide a reason to tell the story. Do share this guidance and explain to them that they need to respond and react, if necessary – oh no, wow, you didn’t? Just as they would to anyone sharing an anecdote.

7. Start with small funny stories – build up to important life events
When people get good at telling little stories that are fun, they will also develop the skills to share more challenging stories – such as an accident; breaking something; feeling disappointed. We know that taking part in storying difficult events can really help people understand, come to terms and move on – and this includes those who have severe disabilities.

8. Be careful not to ask questions as you tell.
We all default to asking… what happened next? Do you remember? This puts too much pressure on the person, and turns enjoyable story sharing into an interview! Try to avoid questions and just provide good prompts. If they don’t respond to the prompt, just keep going yourself.

What to observe, assess and record

Record the stories in a simple form so you build up a repertoire to share with other people… e.g. the Key Story, the Washing Machine story, the Friend Phones story. Make a note of the props and sounds and words you use.
You can make the best personal stories into sensory storybooks just as you do with fictional stories.

Observe how the person responds to telling the story, and any small thing they can do to contribute.

Research information and training for families, professionals and mentors with learning disabilities is available at www.storysharing.org.uk with detailed guidance on how to:

• find and record stories
• prompt co-telling
• set up and run groups
• develop self-advocacy and citizenship
• manage challenging stories
• work with recovery and resilience
• adapt styles of telling for diverse needs and abilities.

Contributors

© Nicola Grove, PhD, Fellow of the Royal College of Speech and Language Therapists
Katrina Arab and Flo Hopwood, specialist teachers, Three Ways School

For further information on the Storytelling team and resources, see Surviving through Story: Covid19 personal story resources for SEND www.facebook.com/survivingthroughstory/

For stories and personal experiences of the pandemic Survivingthroughstory.com

Created October 2020