Over the last decade Scotland has undertaken a considerable amount of work at policy and practice level to embed a human rights based approach in the care and support of people who use social care services. This has reached a peak with the adoption of National Health and Care Standards and a new service inspection framework for care homes, both of which are clearly rooted in human rights principles and practice.
You might ask what all this means in the 70th year after the formation of modern human rights practice when the countries of the world signed the United Nations Declaration on Human Rights in New York on 10th December 1948.
Human rights are many things to many people but I would suggest that they are about relationship, about dialogue and about being human.
All too often when people hear the words ‘human rights’ a set of legal principles and potentially even a litigious court process comes to mind. Undeniably our human rights frameworks across the world give citizens legal protection and the ability to have recourse to the courts if you consider that your human rights have been limited or abused in any way. But the creation of any law usually arises from a failure of people to properly and maturely relate to one another. A rush to the courts when things go wrong is rarely something which benefits anyone. Human rights in their very essence have to do with how we relate to one another. Creating a set of Standards or a process of inspection of dementia services is not about creating a set of new regulations for people to hold against one another but it is about determining what is intrinsic to receiving support that should act as a barometer for a service to be judged by. Human rights have to do with how I relate to you as someone with different needs, hopes, dreams and desires, than I may have myself. Human rights are a description of living with others, being with another, and of caring for someone who might be at a real point of vulnerability in their life. Human rights are about the space between us, they are a language that help us relate and talk to one another, they are a way of learning to be with others, they are a relationship teacher.
The problem with any relationship is that people are all very different. The challenge of a care relationship where someone might be living with the changing and contradictory dynamics of dementia is that the relationship can be a very hard and fluctuating one. Communication is therefore essential. Developing the gist of being with another, to learn the lessons of how and what they say, to discover through gesture and movement, through sound and silence, what another wants and needs is the essence of all good dementia care and support. So too that is what good human rights work is all about. Human rights are not the world of black and white, where answers to challenging questions, come in pre-packaged, linear and easy formats. Human rights are a field where the colours are subtle hues, where there is nuance and fluidity, where the answers are arrived at by working together. Any human relationship needs for there to be dialogue, conversation and discussion. So too in the dynamic of care and support and that’s where human rights work at their best. They are a set of broad principles which enable and allow us to relate better to one another – by having a dialogue, by seeking to arrive at a point of agreement, and by reaching out to grasp a consensus and to commit to a way forward.
In any interaction there are usually more than just one or two people, and so working in a human rights way allows us to consider the words, thoughts and feelings of all those affected within any dynamic we are considering. At their best human rights enables us to create space and place where people can enter into dialogue even on the hardest issues of choice, morality and capacity. For dementia care and support human rights enables a dialogue with a whole set of actors, the individual, the paid carer, the family, others living in community in a care home and many more. As a community in dialogue, holding one another in mutual regard and love, human rights can enable us to answer the challenges which living with dementia can create.
In 1948 the leaders of world had gathered together with the painful scars of a war that had recently obscenely incarnated what it was like to be ‘in-human’, a world where through torture and annihilation, through extermination and holocaust, people had learned the depths of hatred to which humanity could sink. Human rights are the polar opposite. They were created to be a sign and light of what the world could grow up to become, of where the nations could journey to, and how our peoples could choose to be with one another.
They are about being human, about living with dignity, understanding what allowing another to be themselves means, and about what true humanity should strive to be.
There are times in life when we are not always true to our better selves, there are moments when systems and organisations can become so distanced that they act in ways which limit human potential, there are even occasions when with the best aspirations of care and support, the way we care for people with dementia has served to distance and demean their voice and contribution. That is when human rights come to speak into the middle of the dynamic of our care and support.
Human rights in dementia point us forward to a set of behaviours and ways of being with another that serve to enshrine our humanity. What does it mean to allow another’s beliefs to be respected? What does it mean to truly listen to another? What does it mean to work together to enhance freedom, embed choice, give control and to enable decision-making? What does it mean to nurture dying which is personal and an end of life which is individual? These are the questions on which principles of human rights are tested and incarnated, these are the themes of the dynamic of care that gives a human-rights based approach meaning and substance.
Human rights are undeniably about a high set of legal standards by which we are guided and inspired in our work in dementia care and support, but at a very ordinary, local and personal level, they are also about how we relate, how we listen to one another, and how we discover what it means to be human as we live with dementia to the end of that life.
Dr Donald Macaskill
Chief Executive, Scottish Care
Dr Donald Macaskill is presenting at this year's International Masterclass on Dementia Care, Design and Ageing. Book your tickets to hear Donald, and other experts in the field of dementia and ageing, here.