I’ve not really had time to read into this, so putting it out there based on personal experience and as a hunch, to be challenged, explored and tested….
…in sum, I think people are hard-wired to seek control over their own day to day lives. When rendered an object, or left with a sense of limited power, people sometimes striveto exercise that control by withholding cooperation or through little acts of defiance or protest. These can in turn be misperceived as an absence of rationality or capacity and cited to justify further incursions into their agency and power by others in the name of ‘care’. This is because authorship of our own lives is core to establishing and maintaining our identity and our sense of self worth. I’m thinking in particular of people who have dementia – who are often deemed unable to exercise agency safely – but I think it probably applies to other people who require some degree of support. This includes children of course, among whom such acts of protest or defiance are accepted as staging posts on the journey to adulthood, as their personhood and identity takes root.
I was first struck by this when watching ‘The toddlers who took on dementia’ on BBC 1 a year or two ago. Several pre-schoolers spent a week hanging out with adults with dementia in a day centre, matched by their interests. By the end of the week, the psychologists noted how the adults had, to the best they could, reasserted their adult responsibilities. Remarkably, one woman, who had not uttered a word while at the day centre for 3 years, spoke fluidly to the children, giving them adult advice.
More recently, I was told of a visit made by a technology company to a care home in the West Country, to see how care home residents with dementia reacted to a humanoid type robot. As with the toddlers, residents who had not been speaking to staff or other residents began to talk to the robot, and became very defensive when during the demonstration the company rep pushed the robot over to show its ability to get back up. People’s sense of their own identity and agency appeared to be liberated when the power relationship shifted back in their favour or their own power and status was no longer threatened.
At the recent launch of A Better Way Network’s call to action, David Robinson spoke movingly about the importance of relationships in public services. He told the story of his 93 year old dad’s period in hospital, where a ward sister doing her morning round had sat down on his bed, held his hand, addressed him by name and asked how he was and David noted how his dad visibly brightened. He contrasted this with a nurse who later that morning came to take his dads blood pressure, which she did so without speaking to him, and how his spirit appeared to sink and later, apparently in protest, he refused to eat his lunch.
And I see it in my dad, who has Alzheimers and, despite needing an increasing level of support, deeply resents condescension and becomes positively uncooperative when sensing it. And rightly so.
What’s the lesson here? Well, if there is anything in these observations, it’s that a care system that withdraws control from people, through coercion, or the imposition of rules and regimes, power play or condescending behaviour is likely to face people who withdraw their cooperation, to the extent that the exhibit behaviours that are (at least sometimes) misread as declining capacity or capability. People such as Mark Neary have spoken movingly about this with respect to the Catch 22 faced by people with autism and/or learning disabilities in so called ‘assessment and treatment units’, where failures to comply with prescribed behaviours result in further coercion, restrictions on liberty and regimes and so on being imposed. The downward spiral continues.
What if instead real attention was paid to relationships of power when it comes to care and support? Not just personal budgets, or person-centred planning and so on, but in the everyday interactions people experience with others, where genuine respect for people’s identity, will and preferences provided the foundational principle of what good care and support is? This isn’t just about ‘kindness’ – though kindness is crucial – it’s about a constant appraisal of where power lies in relationships of support. Moreover, it’s about recognising that autonomy is relational: it rests upon the quality of our relationships with others; it does not exist in despite of them. As a result autonomy can be ignited, nurtured and – at least to an extent – maintained by focusing on matters of power.
I think this is what Julie Stansfield and colleagues at In Control are getting at with their ‘Be Human’ initiative and I applaud them for it, because its too easy to hide behind rules and regulations and professional jargon when the only thing that really matters is to ‘Do unto others as you would have them do unto you’. That means reversing the usual cycle of wrestling more and more power from those who require support, towards respecting, reaffirming and restoring it.
Happy New Year!