Mountains, Pyramids and the Fate of Self-Directed Support

For me there is always something special about coming to Glasgow. Setting up Inclusion Glasgow in 1996 was certainly the most wonderful, exciting (if stressful) and ultimately rewarding experience of my working life. I still feel lucky - and a little proud - to have had the chance to do it, and I’m so thankful to those, like John Dalrymple, Julie Murray and Frances Brown, who helped make it possible.

This week I am here as a guest of the Social Care Ideas Factory - a great organisation - that seeks to build networks and innovations to promote social change. They are hosting a 3-day international conference on self-directed support, with the thought-provoking title - We Chose to Climb.

This is the first of four blogs that I committed myself to write in honour of their work and the work of all the participants at the conference.

The conference proposes the idea of climbing mountains as a stimulating metaphor for the task ahead - the twofold task: first, to help each one of us, individually, to make the most of our lives together, and second to develop new community-based approaches, to make self-directed support a reality. These are certainly mountains worth climbing.

And this image got me thinking. It reminded me of some my recent reading, it got me musing about my hopes for self-directed support in Scotland, but it also made me think about some of my fears, about what can happen to good ideas, when circumstances change.

Recently I have been reading about the ancient civilisations of the Fertile Crescent and Egypt, and of the birth of the Jewish faith. Mountains played a very important role in the experience of all these people. The mountain was a place where man could approach God, as Moses did at Horeb and at Sinai; and we find the same imagery in the Greek myths. Not only did the Greek gods live on top of Mount Olympus, Hesiod tells us that there was even a special god, Ether, who was present in the luminous fog, that hid the mountain tops. Mountains seem to symbolise both the presence, the greatness and the mystery of the divine.

In this light it is interesting that one of the most ancient structures was the Ziggurat - which seemed to serve as a kind of man-made alternative to the mountain. Not only does this bring the mountain down to size, it also tends to make access to God a matter of social and political organisation. Mountains are democratic - they will accept anyone prepared to climb them. Ziggurats, one suspects, were not open to all-comers.

Certainly the story of the Tower of Babel - Babylon - is the story of earthly hubris - man trying to reach God under his own power. It is also perhaps no accident that the downfall of the tower is the result of conflict and human diversity. The Egyptian pyramid took the ziggurat one step further. Instead of a platform by which the priest can meet God, the pyramid is a resting place for the dead Pharaoh-god. And the pyramid remains the classic symbol of political order, representing hierarchy and stability - it even adorns the US dollar bill.

The Jewish people of course rejected this deathly order. For them God could never be ‘brought down to earth’ in this way. For them the mountains of Sinai, Horeb and ultimately of Jerusalem itself, were symbols, not just of God’s transcendence, but also of our ultimate equality. We can all climb the mountain; no king, priest or leader can stand in our place.

Arguably, Jesus took this one step further. We are all lit by the divine light. Each of us can climb the mountain by ensuring that our light is held up high: “No one, when he has lit a lamp, puts it in a cellar or under a basket, but on a stand, that those who come in may see the light.” [Luke 11:33]

But what has all this symbolism and theology got to do with self-directed support in Scotland?

Something I think.

The proper purpose of self-directed support - why we chose to climb - was to ensure that each person, even if they have an impairment, even if they need assistance - can lead a life of meaning and value. Self-directed support is an assertion of human equality and of our rich human potential.

Yet self-directed support is also an attempt to wrestle power from a deeply hierarchical and meritocratic system. Often the hierarchy seem to win. Here are a few examples of what I mean:

1. Recently I have been doing some research into how idea that I first developed in Glasgow - Individual Service Funds - is being implemented in practice. Essentially an ISF is a simple innovation, it means that a service provider (and that term can be defined very broadly) acts as an intermediary for the person and helps them organise the support they need - flexibly and creatively. Yet, in practice, not only has take-up for this way of working been pitifully low (1% of all funding is spent in this way in England) it has also been bogged down in bureaucracy. For instance, many providers are contracted to work to a support plan that must be signed off by a social worker - the very opposite of the original concept.
2. In addition, ideas like person-centred planning, which were originally brilliant innovations, that helped people to think creatively, have now been turned into mandated, mechanical processes - now everyone must now have their own person-centred plan. The original idea has been converted from a tool of personal liberation into yet another government controlled system. This does not stimulate creativity or empowerment; it merely enriches those who are in the business of planning, training or facilitating plans. A gift of great minds has been turned, by government, into something grubby.
3. Standing further back, in England, self-directed support - or as it has now been renamed - personalisation, remains the official policy for ‘reforming’ adult social care. Yet, in the last four years adult social care has been cut by 30% with 500,000 fewer people now receiving care. So what does it mean to reform a system which is being cut like this? It is not encouraging.
4. Lastly, we have seen personal health budgets (PHBs), proposed as a reform to transform the NHS. This seems such a promising idea. For example, anyone who has seen the poor state of mental health services, to pick just one area, must want to see self-directed support be extend into the NHS. Yet, with privatisation and means-testing growing, will the extension of PHBs not quickly lead to an acceleration in topping-up and other invidious practices? Soon the best piece of the UK’s welfare system - free and universal high quality healthcare - might be eroded into a quasi-insurance system where people are encouraged to take out additional insurance to guarantee faster access, better care or ‘for the good of all.’ This was certainly not the purpose of self-directed support.

This is how mountains are turned into pyramids. Ideas that were developed in the name of equality and of justice, can be uprooted and put to other uses. It seems so hard to fight City Hall.

Yet we should not despair.

While neoliberalism and austerity do appear to be winning, they are in truth, feeble foes. There is nothing inevitable about their success.

However, it will take new kinds of strategies to protect the mountain; and I think that events like tomorrow’s conference show us what is necessary if we are to climb mountains, rather than be crushed by pyramids.

1. First of all, this event is about all of us - as equals - figuring out alternatives together. Our current problems exist because we’ve allowed power to become concentrated in the hands of too few. Together we have the wit and intelligence to challenge ourselves to take back that power. This means overcoming old barriers and distinctions - the divisions by which we are ruled - but we can do this.
2. Second, self-directed support, even done imperfectly, still works. Its power and impact makes it very difficult for bureaucratic inertia to win the day. If we can continue to make practical progress, then, in a few years, it will seem outrageous that we allowed disabled people to sold and re-tendered like slaves; it will seem extraordinary that we did not support families and disabled people to be in control of their own support; and it will seem absurd that so much of the voluntary sector was tied down in red-tape, contracts and regulations.
3. Finally, this event is in Scotland and Scotland has woken up to the fact that it is a democracy. It does not need to leave power where it is. Power can be reclaimed - in fact when the current elite so obviously lacks legitimacy in Scotland - taking back power is just a matter of time. I am sure a modern Scotland will begin to ask some very sharp questions about the kind of welfare state that is currently on offer and will start to move to something more in accordance with the principles of social justice.

Positive change is never inevitable; but the mountain will always overshadow the pyramid.