News

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

13.00-15.15 Online Webinar Rix Centre Thursday 20^th 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

“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

 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

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.