Within Issue 96

Our call for articles for this issue of PMLD LINK was at an unprecedented time, one that will go down in history. Almost overnight Covid-19 brought the world to a standstill and our lives changed beyond imagination. For some this was a time to slow down and more mindfully appreciate their lives, some enjoyed opportunities that had previously never existed but for others, this virus removed the vital supports and human connections that enabled them to live their lives or, it brought great suffering and loss. These consequences were identical too for people with profound and multiple learning disabilities (PMLD).

At this unimaginable time, we posed an open question to readers, to reflect on the lives of people with PMLD. We simply asked – What matters?

Whilst our pages don’t directly reflect the complete picture of their lived experiences over the past six months, the indirect, ‘hidden content’ of the articles and extensive pages of ‘resources’ do. Although very different, they each offer inspiration and challenge, but they also share some important common themes. Every item in the journal depends on human connections, for a meaningful quality of life. In usual times these social, emotional and physical interaction are always face to face, close up and personal. Moving forward we will continue to need to be creative in how we achieve that, whatever the restrictions, to ensure people do not become socially isolated.

Be inspired and challenged by what you read here, but we encourage you to look beyond these pages and explore everything signposted in this issue. Follow up the links and downloads, create your own stories or try out the activities, view the videos and listen to the recordings – these will uncover the real innovation of the contributors. But mostly, appreciate and understand the real stories behind these contributions – about the real lives of people with PMLD, their families, carers and support providers.

Currently, with a real possibility that ‘lockdown’ and shielding is prolonged, this group will remain invisible. In her blog about their library of podcasts, Lucy Garland from Frozen Light reveals the biggest danger;

‘…. the overwhelming response to lockdown coming from the families and friends of our audience was, “Don’t forget us” ‘.

It is essential we learn from these coronavirus experiences, by considering the losses and the gains. To do that, we need to ask again – what matters?