Guest blogger Elly Chapple reflects on the Raising the Bar III National PMLD Conference at the University of Birmingham, and how we can continue to #flipthenarrative in our work as parents, supporters and professionals.
I had the honour of attending the latest Raising the Bar event at the University of Birmingham. Last year, I had shared our journey to #flipthenarrative and been inspired beyond words by the focus of the people attending on the day to will the change in attitudes towards those within our society who may need our help the most. People with Profound and Multiple Learning Difficulties (PMLD) are often missed within our daily view, and as the whole view is critical to all of us developing as humans, their presence and being is key to everyone understanding themselves more.
The work that Annie Fergusson, Joanna Grace, Michael Fullerton and Thomas Doukas have put into ensuring these people have a voice should be highly commended and followed. I know they would all say that’s not necessary, but they as a four took it upon themselves to raise the bar in our human view and ensure that everyone has a seat at the table. The Core and Essential Service Standards for supporting people with profound and multiple learning disabilities (PMLD) that they have created and shared widely are a must for everyone to read across education, health and social care – indeed life.
I attended with my reflective Studio 3 head on this time to listen and learn. In our busy world, sometimes being part of the background is essential to understand what we are doing daily. In fact, I’d go so far to say it’s a critical part of our understanding developing further. Really taking the time to reflect upon things develops our sense of our own states of stress, well-being, empathy and the understanding we afford to others, whose journeys differ to our own. In his book The Reflective Journey, Professor Andrew McDonnell really focuses our thoughts on what we need to be truly empathic and reflective practitioners, or indeed human beings. As Andy says, ‘If we are part of the problem, we are part of the solution’.
A theme that ran throughout the day was the message that people are not what we always assume, and often we aren’t listening or reflecting enough. It sounds simple, but listening to the parents that shared their stories, there was a commonality around the often lack of understanding of what their child could do, who they were and what we should expect. Sally Phillips (@sallyephillips) shared poignant thoughts that resonated with so many on the day – how we could #flipthenarrative around the public perception of people who are seen as different, because those walking with them know how amazing their life is:
‘Being in the world of learning disability can give you a whole new understanding of life. 'You think you've gone down a snake but actually you've gone up a ladder and the board was the wrong way round.'
The way we reflect as humans about others really is key to unlocking our understanding further, and seeing the world through enriched human eyes, hearts and minds.
This is further highlighted within Standard Five, as Jo Grace echoes the same message Andy gives throughout his book – that often it is about what we bring to the table, and how we respond that will inform the next step of the journey. The relationship we have with those we support, or live with and love, and our awareness of our own state within that, is critical to understanding the human connection that can thrive. When we remain conscious about how much we affect a situation with our responses, be those verbal or non-verbal, we see things differently.
Although my own daughter started out life being termed PMLD, she later lost this label, and I’ve thought a lot about what that meant and why. I often think the drive to understand something we do not, via an individual’s presentation – which is often how our children are seen - in medical appointments or during ‘assessments’, the whole context of their being isn’t captured. There can be many assumptions made due to the presentation of certain ‘behaviours’ which take us down one route, but we may have then missed critical information which was available had we remained reflective and curious. This starkly reminds us to be more human, and remember that those we are trying to understand are too. In Ella’s case, missing the vital information that she was Deafblind meant that assumptions replaced reflective considerations about her behaviour.
Mark Gray, who was the first person to see Ella for who she was, also presented on the day, reminding us about the importance of sensory loss and how that changes our understanding of communication, informs our view of ‘behaviour’ and presents situations that we need to be far more aware of to support our fellow humans well. Instead of connecting the dots about Ella’s visual and hearing impairments, the focus became about her behaviour, because that was what was seen first, rather than the whole human she is, or asking ‘why?’ That loss in both senses meant that the world did not make sense, unless she was supported to learn experientially by working with her, not doing to her.
Our sense and understanding of who we are, and who others are, is linked to our feelings of acceptance by one another in shared spaces. Do we belong? Professor Melanie Nind from the University of Southampton Education School discussed the importance of belonging during her talk, and our societal view of what this actually means. Often, we are excluding those who are perceived or assumed to be ‘too impaired’ or, to term it differently, those who we do not yet know enough about.
Being reflective about our understanding of who people are and their being in this world should not just focus on behaviours that challenge, but also our ability to see more than we did upon first glance. When your practice is reflective habitually, you will find that the world is not as it was originally. It is such a simple thing to do, yet it can be inordinately difficult to reframe our view and reflect, connect, listen and see more. Once we have more information and have considered where we sit within the view – our societal view, our ‘norms’, our experience - we stretch. In doing so, fellow humans that perhaps we viewed through one lens, become absolutely ‘worthy of moral parity’, as Eva Feder Kittay discussed, like anyone else. In essence, she states that what we then see is ‘the environment of inclusion: of welcoming many sorts of bodies and minds, seeing the world as enriched by this diversity, and embracing the possibilities as well as the challenges’.
Alison Pettitt’s talk will stay with me for a long time. She described painfully the journey that they had taken with their son, and the danger of not listening to parents who know their child, nor being reflective about why someone’s behaviour is changing. In her son’s case, his behavioural changes were due to inordinate levels of pain. He screamed daily in agony, but this was referred to as ‘behaviour’ and therefore his physical distress was ignored. After two years, his family were finally heard, and the few people who made a huge difference saw him as a whole person, recognising his distress. By working together with the family, his life and theirs was changed for the better.
Sally Phillips echoed the need to listen more, and shared that her son will play video games to block out pain, but to someone who doesn’t know him, this can be interpreted very differently. These stories drove home the critical need for our human reflective practice that encompasses the whole human view, listening not just with our ears but working with those who have the relationships and understanding that we have yet to gain. I’m reminded of something Dr Tim O’Brien (@Doctob) shared recently:
‘Listen’ is an anagram of ‘Silent'. When someone is distressed, listen. Sometimes you don’t even need to talk. You can just be present and listen. Be there for them.’
Our ability to listen comes in so many forms, and when we really attune ourselves the people we are trying to understand, the door is opened wider, furthering our understanding of one another.
It was a day that brought about so many differing views, conversations and reflections. A day that put humans first and assumptions last. The depth of understanding what we are about and how we are together in the shared space was quite overwhelming, and the rich diversity of thought and discussion created many links to so many things we face. It’s a reminder to remain committed to our reflective journey as human beings, to focus our efforts on understanding what we do not, and to continue to strive to see beyond a societal lens that is not yet stretched enough to encompass all of us and give everyone an equal seat at the table.
It was also a poignant and uplifting reminder that we can do that - we will do that – because humans are hard wired for change and we can re-frame our view. We can be better, and we were made for continuous development and improvement. This isn’t something that is solely for those we support in life. It is for all of us to remember that the lessons our fellow humans teach us every day are key to our own reflective, human journey.
Follow Elly on Twitter @elly_chapple!