Within Issue 110
Welcome to the Spring issue of PMLD LINK and the all-important focus on ‘Being Heard’. We introduce this edition with a dedication to Samir El-Ziftawy, who sadly died at the end of 2024. Samir was no stranger to the pages of PMLD LINK, but usually because we were sharing happier news of his campaigning activities. As a member of Campaign 4 Change Samir was a mover and a shaker, a real influence for change, particularly in the area where he lived – he was genuinely heard. We feel privileged to share insights into Samir’s legacy here, with the generous endorsement of his family.
It will come as no surprise that our theme of Being Heard proved to be of such great interest to our readers. We were very fortunate to receive so many contributions, each sharing so much of value and from such a diversity of key perspectives.
In our current times (and avoiding politics), it feels certain groups of people appear to be given less value; their views and lived experiences ignored. We know people with profound and multiple learning disabilities continue to be amongst the most marginalised in society and their voices go unheard, and so too by association, their families and even their paid carers and supporters. This means they are often overlooked or forgotten by policymakers and services and their needs remain unmet.
The many articles in our Spring journal offer such valuable insights and practical ideas to create the ripples of change needed. They highlight the important issues, such as relationships and trust being a vital part of getting to know those with profound and multiple learning disabilities really well. Articles demonstrate that active listening helps us learn more about the very unique ways they communicate what’s important to them as individuals, particularly when we involve those who know them best, to ‘translate’. Sharing potential interpretations of responses and behaviours, allows us to begin to attach meaning to the repeated responses we might see; these expressions may even become meaningful and intentional by the individual too. Being creative with the variety of activities we offer enables us to see which opportunities enables them to interact and empowers their voice, or which situations lead to them to experience a greater sense of understanding or control in their lives. Sadly over the years (decades even) changes to government agendas and long-term underinvestment in services, has meant that vital opportunities for training and support in such fundamental approaches to promoting communication are no longer a given. This makes PMLD LINK’s role even more important to share and signpost the most relevant information and ideas. Thank goodness so many of you are still forging the way and making a difference!
In this issue you’ll notice, even the items in our News and Report Back sections focus on the vital role of those with lived experience being heard. As a consequence, the limited space here means we still have more to share on this topic, in future journals.
We encourage you to dive into the Spring journal with its theme of Being Heard and enjoy the richness and breadth of ideas and reflections shared on these pages. How ‘being heard’ may not even involve language, but simple connections of touch, sharing space or having a presence. How that sense of acknowledgement and reciprocal human togetherness is what’s important.
We’ll finish by stealing a line from the article by Gabriella Walker and Tussie Myserson. They quote from Don Mclean’s song, Vincent: “They did not listen, they did not know how. Perhaps they’ll listen now”
