Story Sharing

Everyone should be able to share their stories

Nicola

WHAT MATTERS TO ME… 13/3/25 Launch

WHAT MATTERS TO ME… 13/3/25 Launch at House of Commons of the Challenging Behaviour Foundation project for young people with severe and profound and multiple learning disabilities

What Matters to Me directly engaged with 11 young people over three years, working closely with their families and support circles. The aim was to gather the experiences, preferences and views of young people to influence policy and practice as they made the transition from child to adult services.
This process is too often viewed as ‘too difficult’ if the young person has limited or no verbal communication. The project used innovative approaches including art, music and Storysharing®, and provided opportunities for the young people to meet and socialize with their friends.

The project findings will be shared via a multimedia manifesto
consisting of photography and films, guides, case studies and resources.

“It can be done. It just needs society just to take a little bit of time and see how these young people express their needs.”

A speech from one of the parents highlighted how
Storysharing® had opened up family conversations.

“We had a fantastic session around story sharing with Nicola Grove. This session actually helped us as a family to think up new ways of talking with our daughter about past experiences and activities. It’s difficult to know what she does remember but thanks to this session we now have several photo books that we share with her. Each photo book focuses on an individual trip out, occasion or holiday and it gives us the opportunity to chat with our daughter about past experiences.”

More information about the What Matters to Me project,
including the four films launched at the event, can be found at:
https://www.challengingbehaviour.org.uk/what-matters-to-me/

Ethics webinar February 2025 – Follow-Up & Recording

Ethical issues in sharing online images with people with PMLDs: consent, awareness and representation. 

13.00-15.15 Online Webinar Rix Centre Webinar, 20/2/25

How can we enable people with profound and multiple disablities to be part of online communities, without compromising their agency and their safety? Social media is now a primary channel for chat, information sharing and marketing – and its use is advancing and changing with the introduction of AI faster than we can track it. We wanted to bring out the ethical challenges involved in sharing photos and videos, identify good questions to ask, and lay the foundations for some practical guidelines – and we think we succeeded in meeting our aims.

Over 130 people signed up to hear from our keynote speaker, Professor Màire Messenger Davies, and a panel made up of families, professionals, and researchers. Professor Davies provided a fresh perspective from her research on broadcast media, press regulation and on the views of young children on their participation. The panel presentations provided food for thought in sharing values, practice and challenges. Everyone enjoyed and respected the views of one teenager on her feelings about social media, represented through the skilled use of a Talking Mat. This is only the starting point – we will be writing a paper, and sharing some draft thoughts for further collaborative action. We look forward to more stimulating debates in the future.

To view the recording, visit our website:
https://www.rixinclusiveresearch.org/ethics-seminar-20-02-25/

Ethics webinar February 20th 2025

Ethical issues in sharing online images with people with PMLDs: consent, awareness and representation. 

13.00-15.15 Online Webinar Rix Centre Thursday 20th February 2025

https://www.eventbrite.co.uk/e/ethical-issues-in-sharing-online-images-of-people-with-pmld-tickets-1088523696679?aff=oddtdtcreator

In a fast changing online world, we need ethical guidelines for the sharing of images and information, with people who lack capacity for informed consent.

Social media is now a primary channel for chat, information sharing and marketing. People with lived experience of profound disabilities have the right to participate and to be represented online. How can we engage them so that they have some agency in these decisions? 

Join us to share your ideas and good practice. Short presentations will be followed by discussion in breakout rooms, ending with a plan of action.

Keynote talk.  

  • Maíre Messenger Davies, Emerita Professor of Media Studies and Policy at Ulster University.  Key issues in sharing online content:

Panel presentations: 

  •  Ben Simmons, Reader in Inclusive Education and Disability Research, Bath Spa University
  • Catherine de Haas, Parent, doctoral student Southampton University
  • Julie Calveley, Director NAC-wellbeing, learning disability nurse
  • Gosia Kwiatowska, Director and Paul Watts Reader in Media,  Rix Centre
  • Liz Tilley, Professor of Learning Disability Studies, Open University
  • Rachel Barker Dorothy Goodman School

News 2024

“For everyone fighting for people’s rights to be equal citizens”. This book is unique- co-authored by people with learning disabilities, it describes lived experience of universal human rights enshrined in the UN Declaration. I was specially privileged to work with teenager Emily, her family and teachers to look at what citizenship means for her – now and in the future. https://link.springer.com/book/10.1007/978-981-99-5563-3

Neuroscience, Narrative & Profound Disability

 Professor Mark Solms’ theory of consciousness promises to revolutionise our ideas about the relationship between emotional and rational (cortical) consciousness. He argues that people with profound intellectual disabilities are emotionally conscious.. In our  upcoming webinar run with PAMIS (https://pamis.org.uk) we will be debating how we can translate his ideas into practice.  You can find a summary of his talk here https://storysharing.org.uk/wp-content/uploads/2022/05/Neuroscience-Narrative-PMLD-summary.pdf

Two speech and language therapists discuss his work in a 5 minute talk here..: Interview with Nicola and Charlotte.  The Hidden Spring is available on Kindle for only £4.74:Kindle: The Hidden Spring. And listen to Mark  talking about his life, work and music, here…https://www.bbc.co.uk/programmes/m0010nwy

Look out for further events where we will be discussing the impact of these ideas on how services are delivered

News for November 2021

Our courses are now available online by clicking here.

Storysharing Masterclass with Gunnar Vege December 2nd 16.00-17.30pm- tickets available now for a rare opportunity to see him demonstrate how memory for events can be created and shared with people who have complex sensory impairments, including those with PMLDs. Gunnar is one of the leading practitioners working with people with congenital deaf blindness.

Click here to buy tickets and email us if you are a parent carer who would like a free place.

On November 25th we have the Surviving through Story conference, sharing the experiences of people with learning disabilities during the pandemic (you will NOT want to miss the gorilla doing a charity run…) https://www.survivingthroughstory.com/post/surviving-through-story-conference

On October 12th with Julie Calveley of NAC we held a webinar to explore how parents think their children with PMLDs experience and express emotions. If you would like to be part of the working group, please email us at info@storysharing.org.uk. A short presentation can be viewed here https://storysharing.org.uk/wp-content/uploads/2021/10/Do-you-know-how-I-feel-presentation.pdf

More events planned for 2022 – so watch this space and sign up for our newsletter to learn more.

Download the September 2021 newsletter for more information about the above, and more.

Personal Storysharing with AAC

In this workshop, speech and language therapist Ashleigh Paddon and mum Jitka Jacubkova took us through a practical guide to creating and sharing personal stories with children who use aided communication – books and apps that are widely available. Certificate and powerpoint can be found below for attendees.

Finding a Voice through Sharing Stories in Sign

This interactive talk by Charlotte Parkhouse, Gareth Smith and Nicola Grove shared creative ways of using gesture and key word sign (eg. Makaton, Signalong) to promote narrative and discussion with young people who have learning disabilities. Our ideas come directly from our students, when we started observing closely what they were actually doing with the vocabulary we had taught them. We saw them holding the floor, innovating, and expressing their ideas directly in ways far beyond what we had thought they were capable of. A recording of the talk will shortly be available. Attendees can access the powerpoint and a certificate of attendance here. The research is described in the chapters we wrote for the book Manual Sign Acquisition by Children with Developmental Disabilities, now available in paperback and with individual chapter purchase. For 20% discount, use code special20 https://novapublishers.com/shop/manual-sign-acquisition-in-children-with-developmental-disabilities/

Movement, Touch and Story

Two great sessions exploring how The Story Massage Programme can be combined with personal stories. Thanks so much to Mary Atkinson (TSMP) and Gill White (PAMIS) for co-hosting these, and to all of you who joined. We are planning to learn more about the role of movement and touch in forming memories from colleagues working with Deaf blind people – watch this space! And our next workshop, on key word sign and story, will look at movement too. https://www.eventbrite.co.uk/e/finding-a-voice-through-sharing-stories-in-sign-tickets-136270309163?aff=ebdssbonlinesearch