The following is based on a contribution to the inaugural session of the Human Rights and Social Care Forum created by Dr Caroline Green, Kings College London, which was held virtually last Tuesday.
If not here, where?
The recent past has cut itself into our hearts like a sore wound. There will be other opportunities to more fully reflect on the wider and detailed lessons of what the last two and half years mean for our society, for the way in which we value older age and in particular dementia as well as the relative priority we give to the resourcing and recognition of social care and its workforce. There will be time to reflect on what I have elsewhere described as the conscious and unconscious inappropriate limitations of human rights – not on all occasions but at some specific times and moments.
It has been a time of hard harrowing and a winnowing of our hopes.
But I want to look both forward and back in the space I have been given, not least as I strongly believe that the legacy of such pain and terrible grief should be healing and if required deliberate and focussed action and purpose. If we do not plot our future we are much more likely to navigate into trouble and trauma.
I have a fundamental question to ask this afternoon about human rights in care homes and indeed elsewhere. The question I think we have to ask and answer is –
How do you enable someone to ‘realise, fulfil and flourish in their human rights, to be treated with equality and in a manner that recognises their unique dignity, and which fosters their sense of independence and identity?
There will be numerous responses and answers to that but for me it has to be about a rediscovery of the individual as the central focus of the human rights response.
We need to rediscover an individualised and personalised approach to human rights.
The reason I am saying rediscover is that the pandemic has shone a cruel light on the way in which we have collectivised our response to human rights to a cost of very real pain and loss.
At heart we have – and by we – I mean society in general, politicians in particular, clinicians and epidemiologists, and those who provide care and support services – we have failed to treat individuals as unique and distinct and not part of a collective – our whole emphasis has been on keeping everyone safe rather than letting the citizen decide and lead.
Now doubtless some might hear these words as a utopian illusion and that in a critical situation of unparalleled threat it was necessary to a degree to sublimate the wishes of the individual and to focus on what would bring fastest remedy, safety, and security. There is much truth in such an assertion. If you are in a capsizing boat then it is often desirable to have strong, directive almost dictatorial leadership, from someone who knows how to rescue the situation – quite literally. But that appeal to emergency and urgency, the vestige of defence from hindsight and a lack of knowledge in the moment, can become a casual excuse for failing to act in an emergency or crisis in a manner which upholds individual rights and yet still protects the majority and fulfils the desire for response and safety.
I am not suggesting that every piece of clinical guidance during Covid should have gone out for extensive consultation, that the only way to uphold rights is to act in a manner which delays response, but I am saying that the presumption that you do minimum engagement, and that you develop guidance and introduce intervention without involvement is an erroneous and dangerous approach. The individual resident, family member or staff members and manager are the experts in the care home environment.
Moving forward I do not think ever again in pandemic response – oh and in passing was there ever a human rights impact assessment undertaken on the pandemic planning processes? (which were themselves wholly inadequate and lacking inclusiveness) – I sometimes doubt it.
Moving forward – there cannot be again a one size fits all approach to pandemic response. For me this was critically illustrated by the approaches to public health and especially to infection, prevention and control measures. In the early days there was a failure to properly contextualise approaches for preventing infection which may have been appropriate and attainable in an infectious disease hospital within an acute health environment but which paid all but lip service to the environmental dynamic of a care home, to the fact that this was primarily someone’s home where they lived not where they were treated or cared for, and to the critical importance of attachment, association, or simply plain love, being with family and having contact, routine, ritual and a diversity of experience. It was – and to a considerable degree – still is a process of IPC which puts the collective, the environment before the individual and the person. We can, must and should do better not just in any future Covid outbreaks but in facing any future risk from an infectious disease.
But how can we protect the individual rights of the person who lives in a collective or group dynamic such as a care home?
This was before the pandemic the central question often ignored, during it was a continual cause of pain and upset, and now and into the future I think is the singular most important question.
Passing laws is one good and necessary step – and in Scotland the changes to the Health and Care Standards enabling a right to visit during outbreaks, and the incorporation of Anne’s Law into the new National Care Service which is being developed – both are positive steps – but let us be honest – we had wider human rights law at the start of the pandemic but a systemic failure to utilise, respond and to adhere to these. Law is necessary but not sufficient.
I am convinced what would make the difference is if all involved become confident around the embedding of human rights in aged care – not just aware – but confident. That can only come through increasing knowledge and awareness of what a human rights-based approach is not just on paper, in theory and text, but in practice, in daily care home life, in the dynamic of relationships.
And that of course is the heart of all this – human rights are about relationships not texts or codicils – their origin in the modern context following the horrors of the Second World War – was to put right the relationship between peoples but much more importantly to begin to reframe and understand again the rights of the individual in a time of crisis, in a community of difference, and in a society where you may not feel that you belong.
Recently I have been spending some time reading the writings and works of Eleanor Roosevelt who was such an inspirational leader at the time of the development of the UN Charter in 1948, and who later President Truman described as the First Lady of the World.
Her words are famous – perhaps the most famous is her sentiment that unless human rights happen in the small places, the ordinary interactions, the mundaneness of human living then they mean nothing. She said:
“Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere.”
But in other writings and this is why I think her words need to resonate today for care homes, residents, staff and others she wrote about how important it was that we did not so collectivise human rights ; not just to focus on what they mean for a country, a nation, a group, but that we always understood that we need to start with the individual and what human rights means for the person.
Signing up to the latest Charter, embedding a covenant in national law, proclaiming you uphold human rights and are a human rights nation means nothing unless it means something to the individual person.
That is why I think we have a real task in care homes. Because like it or not a care home can indeed become a homely place, but it is not identical to one’s own home, because in your own home – by in large – you have choice and control over who you live with, who is your company, who shares your space and place. A care home is inevitably a place of congregated living and exchange, a place where we might get on with the majority, but there might be some we would rather not spend time with.
How then do you do human rights in such a place? How do you as a manager deal with someone quite rightly asserting their Article 8 rights to family life and wanting family to be present but at the same time deal with someone else who for whatever reason, perhaps fear and anxiety, are not wanting you the manager to allow anyone in to visit during an infectious outbreak. Ask any manager and she or he will say – this is the stuff, the mess of ordinary living.
If we take a scenario outwith the pandemic – how do you manage competing interests in terms of activity, or leisure; disagreements over relationships and friendships, disputes in regard to all the other choices which we are asked to make in care home and collective living life?
We have I believe to find a way to restore the individual in human rights in general, and specifically within aged care facilities. But I do think that there is a potential for a human rights-based approach developed in a care home environment to be able to speak to the wider and more general question of balancing the individual and the collective.
Long before the pandemic the Scottish Human Rights Commission developed a project I was proud to be associated with. It was the Care About Rights work and it sought in all social care settings to embed a process of conciliation and decision-making where human rights, equality and inclusion were held in creative tension. It centred around a decision-making process called the FAIR model and I would commend it to you.
It is not easy – it has to do with the mess of living and loving; it will not always work but it provides a framework for talking and action, for reflecting and relating.
We are all diverse and different and in that is the glory of humanity. Care homes at their best are about enabling the flourishing of individual life first and foremost and through that the enabling of what it means to live in loving tension and growing community one with the other. They have the potential of being the best form of human community as we age and sometimes as we struggle with illness and conditions which limit our individuality.
Eleanor Roosevelt also said:
“Remember always that you have not only the right to be an individual; you have an obligation to be one. You cannot make any useful contribution in life unless you do this.”
Let us in her other words create a future where the individual is prized above all – in creative human rights-based intention in our aged care facilities. If we want to make human rights real then they have to be meaningful for the individual resident, family member, worker and carer in our care homes. If not here, then where?
I leave you with some of her other words:
“The future belongs to those who believe in the beauty of their dreams.”