“I am story”.

In a very real and deep sense we are all of us wired into storytelling and story. It feels as if it is part of our DNA, wherever we are and whoever we are in the world we are surrounded by story.

Today marks the start of National Storytelling Week which before the pandemic had taken place in theatres, museums, schools, hospitals, and increasingly in care homes. In a virtual way the coming week will provide folks with a fantastic way to share their own story, or even invent something entirely new. National Storytelling Week is celebrated by all ages and celebrates the power of story to entertain and engage, to inform and include, to conjure mystery and to coracle sadness.

I have written before in these blogs about how I have always loved story and the tellers of tales which have inspired and encouraged me in my life. But at the start of a week where children will paint word pictures of adventure, where some will use words to express emotion and others will simply have fun, it is worth reflecting a bit on why story is important, perhaps especially in these pandemic times.

The best answer to that question, for me at least, comes in the work of Jonathan Gottschall, who in his book, “The Storytelling Animal: How stories make us human” suggests that human beings are natural storytellers—that they can’t help telling stories; that they turn things that aren’t really stories into stories because they like narratives so much. Everything—faith, science, love—needs a story for people to find it plausible. In the world of marketing and elevator pitches, of twitter and text – no story, no sale. Gotschall has said:

“We are, as a species, addicted to story. Even when the body goes to sleep, the mind stays up all night, telling itself stories.”

Stories provide a way of understanding our place in the world by giving structure to what is happening around us. That is the very nature of the big myths of humanity which from the dawning of time sought to explain the unexplainable and to give truth to chaos, safety to fear.

Stories root us in an on-going stream of history – they provide us with a sense of belonging and help establish our identities. Long before the written word there was the spoken word; the oral story constructs the text.

That is why every community, every people, every family has a heritage of stories which have become the truth for them and have helped to foster connection and meaning.

Gottschall argues that just as the brain detects patterns in the visual forms of nature – a face, a figure, a flower – and in sound, – so too it detects patterns in information. Stories are recognisable patterns, and in those patterns we find meaning.

Everyone then has a story.

Life is one long story … it takes us the whole of that life to tell it to its conclusion … Some spend their lives waiting to tell their story… waiting for someone to listen …

It’s not that folks don’t tell tales or share parts of their self but there is a deeper story which is more than just the amalgamation of a set of anecdotes.

It is the story which was told before fire discovered the cave wall, or pen discovered ink, or teenager discovered text … it is the story of who we are, the individual behind the identity we show the world.

This is the story that we want someone to listen to … to really attend to with their whole interest and self … because we may only tell it once, it might only be in fragments, it might only be through the whisper of a silence … but it is the story we NEED to tell.

So if for a moment we accept that story is fundamental to what it means to be human – as many psychologists suggest – what does all this mean for care and in particular what about story and its telling in Covid times?

The week that has passed has tragically seen the reckoning of two statistics – 100,000 people in the UK and 6,000 people in Scotland have died as a result of Covid having tested positive within the last 28 days before their death. Deeply heart-breaking and horrendous.

One of the most tragic aspects of the pandemic is that for thousands upon thousands of individuals their story has been cut short, the next chapter of a life has been left unwritten, they have not had the chance to say goodbye or to finish what they started in their loving and living. But what strikes me as just as sad is that because of the policies of exclusion we have adopted for now eleven months for too many in hospital and care home there has been no-one they have known present to hear their last words, no-one other than a loving stranger to hold their hands in the midst of fear. They have not been able to tell the story of their life and love, of their truth and tear, of their regret and delight.

When I heard these statistics this last week I could not help but think of the hundreds, the thousands, who have died in our care homes, locked away from hands of touch and love, from the presence of family and friend, for these never-ending months of time. I could not help but think of the pain and anguish of family I have spoken to and know and of the anxiety and fear of staff and frontline carers. And we have to remember that during these months we are numbering not just those who have died from Covid for we have had hundreds dying during lockdown. No one wanted or wants this nightmare to be and to continue.

My great inspiration the poet Maya Angelou once said:

“There is no greater agony than bearing an untold story inside you”.

Care is the incarnating of compassion and love so that it enables another person to flourish to their full humanity. Good care allows and frees an individual to tell their story, to be open and honest, vulnerable and authentic. Care is the listener and storyteller in equal measure. Covid has robbed countless thousands of the ability to tell their story, and of the presence of those who loved them to listen to its telling not just at the point of life’s ending but in the days and weeks before. We have been left with a harvest of hurt and harrowing regret which will take years, if ever, to overcome and which has and is traumatising so many today.

As we get vaccinations rolled out, and accurate testing, and PPE and proportionate infection control practices there simply must be a restoration of the presence of family into our care homes. I write that in full acknowledgment of the fear and anxiety, the terror and concern of those staff, managers and operators who have protected folks for so long that they are terrified of the virus infecting and destroying. In the days ahead as Government, providers, staff and families we all need to work together to ensure the restoration of safer visiting into care homes; we need to address the fear not ignore it; we need to remove the anxiety of staff and managers of liability, prosecution and culpability for any act whereby greater access may bring about harm. We need to recognise that life is about risk and relationship as much as it is about safety and protection. We need to work with those family members who are so anxious about visiting loved ones for fear of bringing hurt with them just as much as working with those who are desperate for the touch of love and to simply be with their relatives.

The pandemic has stolen the story of too many, it has corrupted the care we know which brings restoration and put up barriers which have blocked compassion. We have an opportunity to write a new story. We have the chance in coming days to do different and be better. We have within all our communities, by acting one with the other, not in criticism and condemnation, but in solidarity of shared concern, the capacity to write a conclusion worthy of our humanity to what has been a nightmare for too many. We have the power to write a new end.

When the story of this pandemic is finally written will there be space in its pages to tell of the lives of the thousands who are numbered and not named, will there be a space to allow us to grieve for lives unfinished and lost loves?   This pandemic is not just about statistics and science, political action and policy positions. The future should not just be about immunology and vaccines, it has to be about shaping our humanity to the stories of the last eleven months.

Will there be a chapter which shows that when we could we changed and worked hard together to allow people despite the fear of the virus to be together, to better balance protection and presence, to allow people to have folks to listen to the stories of their last months, days and weeks in care home and hospital?

Story is a moment marker and memory holder. We have the power not just in Storytelling Week but in all our hours, months and years to write a story which pulls us forward to a better humanity.We have the power to release the stories untold and to enable a listener to be present.  Let us therefore take up the pen and create it.

Donald Macaskill

The past week has been one of moment and history making. In a sense the Inauguration of any American President is something which tends to stick in the memory – although some of them maybe for the wrong reasons!

So it was that I sat down to watch Joe Biden being inaugurated after weeks of turmoil and anxiety, and amidst all the tradition and formality, I was moved and inspired by the powerful eloquence and rhythmic beauty of the words of the Youth Poet Laureate Amanda Garman. More of that later.

Joe Biden has been around American politics for some time and with age he has gathered a gentle wisdom and insight together with a steely ability to achieve consensus from disharmony. I first began to read a bit of what he had written when he won the election in November and I have been especially impressed by the honesty with which he has come through personal tragedy and the way he speaks about loss and grieving. He has also been someone who has long articulated how important human rights are to him and how they cannot be an add on but must be central to all decision-making, both at a local and international level. In that regard he has written:

‘human rights and fundamental freedoms are each — equally — the entitlement of all. It makes no difference where we live and no matter how we look, how we pray, or whom we love.’

On Thursday last week Scottish Care published a paper which I had written about human rights – it was a continuation of a conversation started a bit more than a year ago when I argued that we should see social care as an inherent part of the human right to health. In this new paper I attempt to do two things. The first was to describe what I believe are some of the key principles that must be present in a human right of social care. The second was to illustrate what that human right of care might look like in practice.

I want to reflect briefly on what that might mean fin these days of the pandemic.

I believe human rights are the foundation which enables us to create a social care sector fit for the future, worthy of the inheritance of hurt we have endured, and a legacy to the hopes, aspirations and dreams of those who work, run and live in our care homes and who work in homecare in our communities.

One of the reasons why human rights speak to me is that they enable us to get closer to articulating a ‘social dimension of social care.’ This is not a play with words but I believe it is important because I feel that in the last eleven months we have seen a creeping clinicalisation or medicalisation of the way in which we support and care for people both in the community and in care homes. That might be partly inevitable in a pandemic, but it must never be our future. We need a recovery of the social dimension of care, a dimension that sees support and care as enabling people to fulfil their potential as citizens, to belong to communities and to enhance their contribution. That is what is social about social care – it is connectedness, community and active participation. It is just as important to finance and resource helping people play a part in their community as it is to repair the fractures of their bones.

Social care is about enabling the fullness of life for every citizen who needs support whether on the grounds of age, disability, infirmity or health. Social care is holistic in that it seeks to support the whole person and in that they it is about attending to the individual’s wellbeing rather than simply their physiological health. It is about removing the barriers that limit and hold back and the fostering of conditions so that individuality can grow, and the independent individual can flourish.

That full citizenship does not happen by accident and for some people it has to be nourished and enabled by social care supports. That is why social care is more than just keeping the clock of life ticking over, it is about filling days with purpose, meaning and value.

Intrinsic to a human right of social care is the ability to enable individuals to be autonomous – this is not a crude individualism, but it is what allows a person to be psychologically, spiritually and physically their fullest self – it is what enables people to flourish into the fullness of who they are as human beings.

If that is true then there is also a truth in that we have stripped out autonomy too often in our response to the pandemic. There is still too little space and place for the voice of those who receive care and support to be heard. There are still too many instances when we do to and advocate for, rather than being attentive to hear the insights, needs and command of those citizens we support in social care and health – even in an emergency pandemic situation. Yes we are in a once in a lifetime emergency – but when do we start to enable people to grow into their individuality rather than restrict them to the conformity of our commands? When do we give control to the individual who receives care and support in care home and own home?

Good care and support are grounded in the realisation that regardless of any cognitive or physical impairments that every human individual has the right to exercise choice, control and autonomy to the best of their abilities and capacity. But that choice has to be rooted in a diversity of options to enable it. A one-size-fits-all model or approach, a take it or leave it offer, does not enable choice, individuality or personal control – it is the State-knows-best attitude which denies authentic autonomous citizenship and corrupts community.

In social care and health care it has become one of the core ethical standards that an individual must be involved in decisions about their own health and wellbeing; must have ultimate control and say in that decision-making and must have an ability to exercise informed choice. So it does indeed matter that I have choice over which care home I want to live in, which worker enters my house to deliver personal care, which service best meets my individual needs.

Choice in social care is not a consumerist added-extra but rather it is the heart of the enabling of the individual to be heard and valued through the way we work to support them. I’m not convinced at all that we have done all that we could have to protect individual choice and personal control during the pandemic.

Now of course, we do indeed use all the right language –  I have read libraries of books about person-centred care over the years – that sense that we put the person and individual at the centre of our compassion and care – all of which no one could disagree with. But a human rights basis of social care is about really empowering individuals and communities. It is about ensuring that the professional is there on tap not on top – ensuring that the primary direction is from the individual. That is always a challenge perhaps especially in environments like a care home where we are living one with the other not as a company of strangers but a community of friends.  What would it take for the system to give real power to the citizen? How can we change to adopting the principle and effect of person-led care and support which empowers an individual to take control and to be autonomous, to exercise real and meaningful choice rather than what happens to be available or what another decides is best for them?

There is a great deal of debate about the future of social care in Scotland and no doubt in the days and weeks to come that will become a loud, partisan and party-political debate. I hope it also becomes one where we all can play our part and have our voices heard. This is everyone’s business – how we develop a social care system fit for the future is far too important to be left to our politicians alone.

The future of social care is I believe, one that has to be grounded on key principles which advance the human right to social care. It might be challenging especially during a pandemic, but these are principles which value the social just as much as the clinical, they enable the autonomy and control of the individual, they offer real meaningful and informed choice, and they foster independence and personal fulfilment in community, care home and own home. I want a social care system in Scotland that is properly resourced, that values the workforce by trusting and rewarding them appropriately, that nourishes skills through education and learning, but which more than anything else is at all times led by the person who uses that care and support, not politicians or policy makers, not worker or provider, not processes or targets, not budgets and finance, but by people whose outcomes truly matter.

I mentioned the inspiring Amanda Gorman who’s poem at the Inauguration stole the show – ‘The Hill We Climb.’  As I listened to it I felt that it could well be a description for the future of social care as a human right in our own nation. This will not be easy, there will be the sweat of energy spent as change is achieved, there will especially in these days of pandemic fear and anxiety, be a sense of being overwhelmed but …

The way we care for those who require to be supported in their citizenship is the truest mark of our identity as a nation – it is nothing short of the fulfilment of society, the enablement of community, the ownership of citizenship – it is about connecting, communicating and celebrating in togetherness.

In the words of Amanda Gorman:

When day comes, we ask ourselves where can we find light in this never-ending shade?
We will rebuild, reconcile, and recover.
In every known nook of our nation, in every corner called our country,
our people, diverse and beautiful, will emerge, battered and beautiful.
When day comes, we step out of the shade, aflame and unafraid.
The new dawn blooms as we free it.
For there is always light,
if only we’re brave enough to see it.
If only we’re brave enough to be it.

(There are many places to see the full text https://www.townandcountrymag.com/society/politics/a35279603/amanda-gorman-inauguration-poem-the-hill-we-climb-transcript/ )

Donald Macaskill