Human rights as the hill we climb: a reflection on social care.

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 )

Donald Macaskill