Unconquered Care: the human right to independent living

This week’s blog is an adaptation from an address I gave at the Scottish Care Homecare Festival a couple of days ago.

It has been said on several occasions – that we are at a key point – as a nation – at a crossroads as a society – perhaps that is inevitable given the trauma and the pain of the pandemic

There are two major legislative proposals which are likely to come before the Scottish Parliament in this coming term – the first are the plans for a National Care Service and the second are the proposals for Scotland to have a new Human Rights Act. I want to talk about both.

I’ll take the latter first – we all know that human rights are often mentioned and there are few who perceive the broad concept of human rights in our culture in a negative sense – but it is one thing to make constant reference to human rights it is quite another to really embed rights but if they are to be more than a fob to liberal conscience they need to be rooted in practice and in reality, and critically in legislation.

I am today calling for the new human rights legislation to have on its face – a right to social care and specifically a right to independent living. I have written a lot about why social care should be seen as a distinctive human right and not just subsumed into the right to health. Social care as we all know is much broader than a narrowly defined acute physiological or even psychological health definition – it is about the enabling of wellbeing, it is holistic, it is about relationship, connection and citizenship.

If we are creating a new Human Rights Act – then I would hope as a nation we can be adventurous enough not just to take the easy parts from the Convention on the Rights of Persons with Disabilities and the Covenant of Economic, Social and Cultural Rights – but to seek to push these to their ultimate and to be progressive and visionary.

The CRPD has a famous section which is Article 19 which recognises

‘the equal rights of all persons with disabilities to live in the community, with choices equal to others’.

The CRPD is the first legally binding instrument to give explicit recognition to the right to live and participate in the community. While the recognition of this right is an important step, having it in legislation is not sufficient. Successive governments have been criticised for their failures under the CRPD whether through the bedroom tax at UK level or other measures such as the failure to fully implement Self-directed Support in Scotland. They have been criticised for failing to live up to the requirements of the Convention. Bringing it into national law would be a huge first step for Scotland but it cannot be the last one.

Article 19 of the CRPD provides a clear vision for the future – that people with disabilities can live in the community as equal citizens. But simply being present is not enough – presence requires support for it to become belonging.

It is also important that older person groups and advocates see themselves within the scope of this legislation and come increasingly to recognise that these provisions if incorporated into national law give them added recourse and opportunity. We might argue till the cows come home about whether for instance ’dementia’ is a disability but that nicety should not be at the cost of empowering our older people communities.

And in passing I hope our political leadership will finally have the courage to create a Commissioner for Older Persons like Wales and Northern Ireland have and critically support the United Nations in its work in developing a Convention on the Rights of Older Persons.

But more than that I want to see a right to social care and a human right to independent living on the face of any new legislation brought forward to create a National Care Service. Unless it is there – unless it is enshrined in statute then the ability to achieve what Feeley hopes for which is a real re-orientation of power and influence away from the system to the supported person, a re-design which puts the individual rather than commissioner at the centre, will not be fully achieved.

We have had plenty legislation in the past – and it has been effort wasted in large part – Feeley made clear the extent of the implementation gap – I think it is a chasm not just a gap between aspiration and real life. It would be unforgiveable if we fail to achieve the vision of Feeley because there is not sufficient legislative intent to give citizens the ability to challenge and where necessary have recourse when things go wrong or do not meet what they consider to be their human rights.

This is not just a semantic suggestion. Incorporating a human right to social care in both pieces of legislation would show that our politicians are serious and not just playing to the crowd. It would bring with it a set of duties and accountabilities on a range of stakeholders and the ability to seek redress and to ensure all duty-bearers live up to their responsibilities.

So, what about this right to independent living – why is this so important? Why is it so important that people can be who they are in a place they call home, in a community they know and love, with people they wrap around themselves with familiar grasp and touch?

One of the first roles I had in social care was working alongside people with learning disabilities who were living in long term institutions or hospitals. My job was to support them to become more independent but also to support the staff they would work with to help them in the journey from closed hospital ward to open community.

It was hard but also such a rewarding experience. One person I remember well and who I go to know so well – summed it all up for me when I asked him why it was so important that he was moving into his own home. He turned to me and said: “Donald – I now have a name – for the first time in my life I have a name and a place I can call home. Now in his seventies he had entered that institution in his teens decades before. He was probably someone who we would now describe as having emotional and behavioural challenges. But for that he spent decades institutionalised. And of course, he was there in a time when quite literally we gave people numbers not names, categorised them by diagnosis, and really failed to see rehabilitation or recovery as in any sense necessary approaches. Because he had been there for so long, he had remembered the days when he was just a number on a patient file, a reputation, a diagnosis…now he had a place to call home.

For most of us being able to be who we are; to be with those we want to be with; to be able to create our own pattern and time; our own rhythm, and moment – is the essence of what independence is.

It is all about life and living on our own terms – a life free to find its own fulfilment

But it does not just happen. For so many who need support whether because of age or disability, condition or disease, circumstance or event,  independence must be resourced and supported – planned and prepared.

That is the real essence of social care at its best – not a system or process, but the developing and nurturing of a support relationship that transforms a life – that gives it a name like no other name.

Social care support allows us to belong – to be a vital vibrant citizen in our community; to have our words heard and to make us feel we matter; we have something to say that should be heard and which can make another love us or even to change society. Paradoxically true independence is not separation from another but closer connection to others.

That is why a human right to independent living is so important.

For a party of Government that prizes the goal of independence for the country – the Scottish Government should commit to embedding in legislation the right to independence for each citizen regardless of disability, age, or circumstance. You cannot foster an independent nation without nurturing an independent people.

And if we created a social care system, a National Care Service, rooted in the human right to independent living – then we might be able to work together to build a homecare sector which was founded on the principle of enabling independence to the fullest and what a change that would be…

It would give people the ability to question the obscenity of commissioned care visits which are task oriented and functional in nature; it would enable a citizen to challenge the presumption that their worth and value can be calculated in 15-minute timeslots.

It would help the whole sector – both the health and social care system – to revert to a preventative, relationship based, dignity infused model of dynamic care delivery rather than the embarrassment of indignity that we now too often are forced to deliver.

It would really help to empower people to be the directors of their care support rather than passive consumers of a take-it off the shelf care package, pre-determined by commissioners and delivered by providers with little scope for change. It would put real muscle and meaning to the talk of person-led rather person-centred care support.

It would help to foster and encourage innovation, which was able to be delivered because all providers, across all sectors were treated with equality and all citizens regardless of diagnosis or age were treated with fairness and equity.

When Nelson Mandela was imprisoned on Robben Island, he often recited a poem to his fellow prisoners. That poem was written by the Victorian William Henley and followed the loss of the lower half of his left leg: he was determined to remain ‘unbowed’ and ‘unconquered’ by this physical setback. The poem is called Invictus – and inspired not only a film by Clint Eastwood, gave its name to a male cologne but a new movement for injured veterans in the form of the Invictus Games. Invictus is the Latin for unconquered. It was a poem which for Henley made sure that he would remain independent, the master of his own fate, the director of his own life-story.

It was also a poem which my friend had in a frame over his bed in the first place he could call home – it described his own determination to be independent and not to be bowed or overcome – in a place where he was not a diagnosis, a number or reputation but a man with a name and a story – at last.

‘Out of the night that covers me,

Black as the pit from pole to pole,

I thank whatever gods may be

For my unconquerable soul.

 

Beyond this place of wrath and tears

Looms but the Horror of the shade,

And yet the menace of the years

Finds and shall find me unafraid.

 

It matters not how strait the gate,

How charged with punishments the scroll,

I am the master of my fate,

I am the captain of my soul.’

The prize of a reformed, reshaped, and re-invigorated care at home and housing support sector in Scotland are transformed lives in a transformed community. That is why the human right to independent living matters and why it needs to be at the heart of any new legislation for Scotland’s human rights and social care future. We need through independent living to give every person who requires support a name they can call their own.

Donald Macaskill