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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

You are the people who keep this venture alive with your ideas, challenges and expertise!

Lucy Cooke has just qualified as a Storysharing Tutor, submitting a really impressive portfolio to demonstrate how she leads training and implementation in her school. Lucy will be co-teaching a Creative Education webinar on gaining a voice through story with pupils who have profound learning difficulties. https/:www.creativeeducation.co.uk. Lucy will be posting some of her experiences on the site

Gill White is a parent, working as well with the PAMIS charity for children and adults with profound disabilities, in Dundee. Look at their website for fab resources and ideas…www.pamis.org.uk. Clare Cummings and Amy Meredith work at Three Ways School. Lucy O’Neill works at Wilson Stuart School. Rachel Barker from Dorothy Goodman School works with autistic youngsters and has been combining Storysharing with other relevant approaches – she will be writing about some of these ideas soon on this website. Thanks to all for contributing thoughts for the online course.

Our first online graduates were Ashleigh Paddon, Jess Meredith Wickes and Jade Cook. Ashleigh is a Speech and Language therapist who has a wonderful website at https://the-therapy-tree.com; Jess is well known to you all as one of the stars of Abbie’s hospital visit, and has been using Storysharing for some years; Jade Cook is the Director of Spectrum Community Arts (www.spectrumca.co.uk ).