Are we truly “Listening” – a reflection on the work completed by Dr Beverley Samways 

Book – Unspoken Stories: Learning to Listen to People with Intellectual Disabilities who are Non-Speaking 

Content note: Some aspects of this article may be upsetting for readers. In reflecting on Beverley’s experiences, I draw on her own words and observations, alongside my personal reflections on what she has shared.

I have recently been thinking a lot about communication, language and the ways in which this can and certainly does influence those we support but also those who are asked to offer support. I am a clear advocate of responding to the wants and needs of the individual, BUT how do I truly know that the approaches that I am supporting or advocating are meaningful to the individual? I have worked alongside many individuals who are able to clearly able to tell me what they want, and why they want it, (another BUT incoming) BUT what about those who may communicate without words or who are non-speaking. How do we make sure that their voices are heard, and how does this change the “listening” journey that should be embedded in my opinion within any person centred/led approach and certainly emphasised within the context of a rights based approach (another passion of mine!).  

I found my listening journey both challenged and enlightened by the book by Dr Beverley Samways. This book is based on her PhD studies and the interactions that she shared with “Cassie” and “Owen”. Differing interactions and relationships are explored by Beverley and similarly I found myself asking “What happened next” but I am fully aware that a study timeline does eventually come to an end. It also made me reflect on the many individuals that I have worked with where I have said “Goodbye”, where I have moved to new job roles or discharged individuals to move my support to the next person. So, in review of my thinking related to Beverley’s book and my thoughts in relation to how they align to our PRICE Principles I wanted to start with a comment from Beverley where she reflects on her choice of an ethnographic approach (not something I will define here!) but one point really emphasizes my own thoughts;  

“Ethnographers generally start by being open and reflective about themselves. This shakes off the idea that the researcher is some kind of human “blank slate”, and means you understand a little of what they are bringing into the process. All of this helps us to remember that the most effective way of understanding each other well is not through objective experiments, but through relationships.” 

Those comments very much resonated with me around my own personal and professional approach where I always try to be open, and reflective, recognising that I bring something to this situation but also that the importance of developing “relationships” cannot be underestimated. 

From this point I wanted to share my reflections and thoughts on aspects of Beverley’s book and journeys with Cassie and Owen from the perspective of our PRICE principles.   

1. Always practice within a human rights and person centred framework 

Beverley shares a number of examples and what appear to be challenges to this principle with both Cassie and Owen appearing to lose out on the practice and experience of both a human rights understanding but also a person centred approach. The sense of safety seems to be a key reflective point here, for Cassie there are examples of her sharing her sense of loss and how this made her feel emotionally unsafe. Cassie shares with Beverley what appears to be her experiences of loss such as in relation to her housemate “John” who although she continued to see at times did continue to be a loss for her to process. Cassie’s loss however was not just linked to “John” who she clearly missed from the observations but also carried the loss of her Dad who had been sick and sadly died.  

When reflecting this in terms of our PRICE principles I reflect on not only Cassie’s rights under the Human Rights Act 1998, but also the “human” right to be able to grieve and process loss, and as such be supported in a way that is person centred and meaningful to “Me!”. Cassie like many others need those around them to be “listening” to their loss, what may appear small or manageable can build as the person begins to experience multiple loss (family, care staff, routine, familiarity!). With that in mind I reflect on the principle and it reinforces within my mind that practicing in a way that ALWAYS considers humanity and the person will support the protection of the person and their rights in care environments.  

2. Have an understanding and awareness of the needs of those being supported.  

There is a moment in Owen’s story where Beverley speaks of a moment shared between Owen and Patricia. This moment is linked to Owen looking at pictures of himself, tapping them and responding to Patricia’s questions about “Who is that?” and both making the point of “It’s me!”. Patricia sharing that moment with Owen for me reflects the understanding and awareness that they share of Owen and what he needs at times to be supported. I read this again as part of my reflection and I find myself smiling. But I also find myself thinking about the important of that connection, that ability to shape and share that conversation without words.  

On reflection knowing who, where and how Owen wanted to share his conversation in pictures clearly cannot be underestimated and Patricia was able to show that she understood and had a good awareness of his needs, importantly she “listened”. This feels naturally aligned to our PRICE principle related to having an understanding and awareness of the needs of those being supported. At that moment Patricia and Owen shared that understanding and awareness, but importantly it was also a great moment to support a wider moment which could be shared and learned from in terms of how that supported Owen. In my view Patricia “Listened” to Owen and his voice without words.  

3. Plan and prioritise for the use of primary secondary and non-restrictive.   

As we develop an understanding and awareness of the individual and how they wish to be supported then this will enable us to meet the person at their pace and time. But we also need to have that same understanding and awareness when things are moving in a direction that is difficult, distressing and may need a differing approach.  

Beverley speaks about a moment with Cassie and two staff who were not that familiar to her. This moment unfortunately for Cassie was linked to a period of sadness due to her Mum not being able to visit due to illness. The two staff were trying to offer activities that were of interest and meaning to Cassie, but the overwhelming emotion of sadness was not contained, and it spilled out in vocal distress. This led to another staff member coming and offering support alongside Beverley, using her pictures of family to explore her feelings and activities that for Cassie had a clear “beginning, middle and end”, in this situation it was episodes of “The Simpsons”.  

The activities offered to Cassie appear to be linked to what she would usually enjoy and as such there is a sense of planning and priority to the “primary” support that is meaningful to Cassie. However, what was also evident as Beverley’s observations grew was that there also needed to be some “secondary” approaches understood, prioritised and offered to Cassie. Beverley spoke with Cassie about her family, a very important group of people to Cassie but she was also offered something that could help her manage these emotions with activities that have continuity and consistency. There is clearly nothing that could have taken those emotions away and there never should be but recognising their importance and having “plans” and items that are meaningful to Cassie helped enable her to meet her needs at that moment in differing ways. From a PRICE perspective showing a non-restrictive approach that is based on recognition of when what we refer to as my primary needs are not being met or that I can’t find the energy to guide myself to them and as such having other activities that may be led and suggested by others can enable non-restrictive practice(s). We cannot plan or prioritise if we are not truly “listening”, and when we do we capture the essence of the person and respond in ways that are meaningful to them. 

4. As a last resort, only use approved restrictive and non-restrictive techniques.  

This is a key principle and features in many of the guidelines and reference points related to supporting individuals who may experience distress. The last resort principle is important as it is there to guide our thinking and decision making when we are responding to someone’s distress. We have already considered some of the non-restrictive approaches that can be considered and even when distress is high these can and should still be part of the response. However, at this point in my reflection of Beverley’s book I want to explore a situation that is shared where it appears unclear as to how “last resort” would be considered alongside all the other approaches that need to be considered before restrictive interventions are used.  

Beverley reflects on a conversation with a staff member when supporting and observing Owen. The discussion is led by the staff member requesting that Beverley always has Owen in front and never have them behind you as in the written word; 

“You never know what they are going to do next. No one understands him. No one can understand him.” 

This also leads to a further sharing of words with the following shared;  

“Its different with these kids, because they’re minors. If they attack you, even if they attack you badly, all you can do is put your arm up.” 

Continuing with;  

“It’s different in an adult mental health hospital. There if someone attacks you, you can just grab them and put them on the floor.” 

This is one of the most powerful parts of my reading and I have read this chapter many times to explore in my own thoughts what this means to the person saying those words and what their experiences are that led to this conversation. But as reflected by Beverley how would this be shown to Owen, and how would it influence the support being offered?  

I do not know the experiences that have been had, nor the training offered, but what I reflect upon is that this does not feel like a “last resort” discussion or thought process. This is the only aspect of Beverley’s book that clearly referenced discussions or reflections related to restrictive practices and to be fair that was refreshing, but this moment captured for me why all of our PRICE principles are so important. If we lose sight of the person, what is meaningful to them and how to support those moments then we may well find ourselves responding with “first resort” approaches. I am not naïve to think that at times we need to keep ourselves and others safe, but I continue to believe that we do that by “Listening” to the person in all of the ways that we truly can if we want to. 

5. Use reflective practice to change culture and reduce the use of restraint 

This is the final PRICE principle and yet for me it has fed into every aspect of my reflections on Beverley’s book. The power of reflection is for many underrepresented, under resourced and seen to many times as “another thing to do!”. But Beverley’s book gave me some time to reflect around a group of people who have certainly taught me so much about people and myself.  

So, to end this rather long blog (not my usual writing style), I want to use some of Beverley’s reflections that for me can and should enable us to position ourselves as the “listeners” to the stories of those who tell their stories without words. Using those stories to support our practice, to change our cultures of support and fundamentally enable us to respond to distress in ways that can reduce restraint and other forms of restrictive practices.  

For Cassie;  

“and I leave, not confident, but hopeful that the roar of her grief will be met by the roar of her resilience. Knowing that she is hard wired for connection, and will find others to connect with, not in spite of, but inside of her grief, magnetising the few others that cross her path who can swim with her in those deep waters.” 

For Owen; 

“this is Owen, thinker of thoughts, a holder of sadness, with home held inside him like a precious bear at the back of the flowerbed, rediscovered together with joy and defiance.”  If you get chance to read Cassie and Owen’s journeys with Beverley then please do, as for me it has supported me to reflect on my own practice and emphasise my thoughts of the importance of our PRICE principles and fundamentally giving strength to “Protecting Rights In Care Environments”.