Simon Duffy

Thoughts, Bemusements & Arguments

Tag: self-directed support

Why We Are Launching Citizen Network

Hütia te rito o te harakeke, kei hea te kömako e kö? 
Kï mai ki a au, ‘He aha te mea nui i te ao?’ Māku e kï atu, ‘He tāngata, he tāngata, he tāngata’. 

If the heart of the flax is pulled out, where will the kömako sing? 
If you ask me what is most important in this world, I will reply, ‘It’s people, it’s people, it’s people.’Maori Proverb*

Last Thursday, in Auckland, at the international conference on self-direction, brilliantly hosted by Manawanui In Charge, we launched Citizen Network. I think this might be the most important initiative that I’ve been a part of and I want to explain here why we’ve come together to create Citizen Network, and why we hope you will join us.

The idea of Citizen Network began at the Vancouver Conference on self-direction in 2015. We wanted to find a way to connect up all the positive initiatives, around the world, that advance citizenship for people with disabilities, and for the many others who face oppression, stigma and exclusion.

Many of us have spent a good part of our lives working on important system changes (like closing institutions, creating community supports or developing systems of self-directed support) and we want to build on all of this. We want to get better at recognising and supporting positive innovation and be more effective at advocating for these changes within our societies.

However we also feel that these system changes are not enough. Even the best system can be corrupted when we lose sight of the deeper values that inspire our work and our own integrity in helping change to happen.

We need to understand what we are really trying to achieve and why it is important. So we have focused not just on self-direction, but on the broader goal of citizenship for all.

For while it would be simpler to have a narrow focus, on systems of self-direction (important as these are) we feel that this will fail to address the real challenges that we face. Even more importantly, we would fail to tap into the hunger for justice and for true citizenship that had originally inspired deinstitutionalisation and the creation of positive innovations, like systems of self-direction.

It is the values that inspire and fuel our appetite for making change happen. We believe people are ready for a more ambitious and hopeful vision of the future.

Now is a good time to stand back and think about the bigger picture. Now is a good time to break down the barriers, silos and categories that so easily divide us. Now is a good time to go deeper and seek the true source of our values. For so many of us want to live in a world where

  • difference is not just accepted, but rather it is cherished and celebrated,
  • where we don’t just treat people as if they were equal, we know that they really are equal, and
  • where everyone can be a true citizen, living a life of meaning, supported with love.

There is no better time to express these hopes and to try and act from them. The election of Donald Trump, Brexit, politicians pandering to hatred and vicious austerity policies (especially in the UK) are all signs that the old ways of thinking are not working.

We cannot be satisfied by just focusing on changing systems when the world as a whole is going backwards towards increased social injustice. We must see our lives and our work in the light of this bigger picture – no matter how challenging that may feel.

So how can we respond to the challenges ahead?

Of course it is important for all of us to play our part in the ordinary political processes in our communities, to get involved and to support those advocating justice and citizenship for all. But even if we win the occasional victory in this way this won’t help us if we do not also understand the cause of our current problems. Winning power is only helpful if we know what to do with that power.

Those of us who have been fighting to close institutions, to advance disability rights, to promote self-direction and community lives, have a special responsibility to share what we’ve learned with others. We have two generations of learning about what it takes to support real citizenship. We must share that and try to reshape the assumptions of the political landscape around it.

For instance, we could make common cause with those who face others kinds of exclusion from citizenship. The migrant, refugee or asylum seeker, fleeing terror or just trying to build a better life, faces hatred and exclusion, just as have many disabled people. Can we not work with those communities and learn from them about what they are doing to achieve true citizenship? Can we not help them stand up against xenophobia and racism?

Also, if we do advocate inclusion into community, then surely we must also pay attention to the real state of those communities. We do not want to include people in communities that are rife with poverty, insecurity, inadequate welfare systems or where there are no decent democratic structures. Citizenship is a problem for all of us; we are increasingly living in an elitist society where the only source of value is a paid job. This is bad for all of us, and in our changing economy it is hard to see how this is even sustainable. Inclusion is not enough. It must be inclusion, with justice, that we seek.

Perhaps, at a deeper level, this is also about the kind of people we want to be. Do we think the worship of money, status and power will lead anywhere good? Lives of meaning and love, lives of citizenship, are possible for all of us. But we must leave behind the shallow values and insecurities that feed our fears and tempt us to blame other people for our problems.

We must be citizens, true citizens, thinking and acting with integrity and with a concern for other people and the natural world. We must value citizenship – and explain its value to others. We must act like citizens – cooperating and taking responsibility for the communities in which we live.

We must grow and safeguard the heart of the flax – the communities that nurture and sustain us.

This, at least, is our crazy dream; and this is what led us to form Citizen Network.

You can find out more by visiting the Citizen Network website. You can join for free, and groups or organisations who want to become part of a community committed to the values of citizenship will be listed on our world map.

It is early days, there is much to do and we are bound to make some mistakes. But we have already established networks in Australia, Scotland and England and we hope to have several other countries join us shortly.

What will it do?

Well to begin with I think the focus will be on innovation and advocacy.

There is much we can do already. There are great people out there doing brilliant work. We need to learn from each other. So Citizen Network will act as an international cooperative of people and organisations who are willing to learn and share with each other – share and share alike. We hope to end the pointless competition which so often closes down innovation. Instead we will focus on how we can help make positive change happen together. Events, webinars and practical projects are likely to be early first steps.

There is also much to challenge. Sometimes we need to change systems, change laws, combat injustice. Often this is too hard for one person or one organisation. But through cooperative international action we may have the ability to exercise more influence on behalf of justice. For instance international surveys can help us better understand where progress is, and isn’t, being made.

And of course self-direction and individualised funding will still be a very big part of things – it is still our strongest suit. I very much hope we can build on the great work started in Vancouver and continued in Auckland. Perhaps we can set a new date for an international gathering.

It’s early days, but I know that others will join us. There is a hunger for a more positive vision for society and we can play a part in helping to define and share that vision.

When times are hard and when so many seem to have forgotten the meaning of citizenship and justice then we must stand up and we must reach out to each other. We must not join in with those lost in hatred, nor can we stand by, expecting someone else to solve our problem.

Perhaps the triple call of the Maori proverb is to remind us that

People are valuable – there’s no place for rejection and exclusion

People are special – each of us can live a life of love and meaning

People are powerful – together we have what it takes to build a better world

Citizen Network may not be able to solve all the worlds problems; but together we can create a world where we recognise that everyone is different, everyone is equal and everyone matters.

Join Us

* By visiting Auckland library I discovered that the kömako is most probably the bellbird and the metaphor of the flax is related to the fact that new life comes from the heart of the flax bush; to pull out the heart of the bush is to leave the bush sterile and incapable of bring forth new generations.

Coming Down the Pyramid or How to Give up Power

Today I was part of the We Chose to Climb event, created by the Social Care Ideas Factory. It was a stimulating affair, and I really enjoyed being there – seeing familiar faces, catching up and meeting new people. I was also greatly encouraged by the presentations and the thinking I heard expressed. There is still a long way to go to make self-directed support a reality in Scotland – but there is a maturity and reality to the approach in Scotland which I found very encouraging.

The day was too full to do justice to everything I heard, but the image I was left with was that of Alison Petch: It may difficult to climb the pyramid; but it is even more difficult to climb down.

Added to this was Charlie Barker-Gavigan’s observation that more people died coming down the Matterhorn than going up it. Descending from a position of power is a dangerous business.

All of this tallies with a well-known historical fact: the risk of a revolution tends to increase, not decrease, when regimes start to show weakness and try to reform themselves. Alexis de Tocqueville, the great French political theorist put it this way:

“Revolutions are not always brought about by a gradual decline from bad to worse. Nations that have endured patiently and almost unconsciously the most overwhelming oppression, often burst into rebellion against the yoke the moment it begins to grow lighter. The regime which is destroyed by a revolution is almost always an improvement on its immediate predecessor, and experience teaches that the most critical moment for bad governments is the one which witnesses their first steps toward reform.”

So – indeed – nothing seems more dangerous than to give up power.

Yet, self-directed support does seem to depend on some kind of giving up of power. It is only real if there is some shift in authority – if people can make more decisions and exercise more freedom in their own life.

However, I think we must careful here. We must be careful in our thinking about power: power is not like a cake, which we can buy from the baker, and divide at our own choosing. Making power is not a zero-sum game – it is not a matter of winners and losers or the distribution a finite object.

Hannah Arendt, in her wonderful essay, On Violence, distinguishes true power from the violence that we often confuse with power:

“Violence can destroy power; it is utterly incapable of creating it.”

For Arendt, power is made when we come together as free people and commit ourselves to create a world of collaborative action – in other words, true power is the expression of citizenship and community. We make power together and the sign of a decent society is that it is overflowing with power.

We become confused because sometimes the powerful can deploy violence, and this can lead ultimately to the corruption of power into terror or tyranny. But in a sense, such a world is a world without power – power has been replaced by violence.

What we can learn from this is that, we can make our descent down the pyramid safer if we start to release our capacity for the creation of new kinds of power – the powers that are released when we come together to create new and better ways of being together as equals.

Connected to this was an observation by Susan Eriksson, who was commenting on the slippery nature of the power shift in self-directed support in Finland. Susan noted that, while there were new and positive changes for people, it was also clear that professionals also used self-directed support as a way to reassert their role and to develop new accounts of their professional purpose.

Now this may sound rather suspect; but I actually think it is essential, if we are to achieve the shift to self-directed support. If we want people to descend the pyramid then we must try and make it safe for them to do so. This means working together to help that group to find new roles and develop more productive forms of power relationship.

Commissioners – for example – need to be welcomed into a new a more collaborative definition of their role.

At its worst this process can be corrupted and no real change takes place – but at its best – as my friend Suzie Fothergill sings: we will find that there is room for all of us in this world.

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.

© 2017 Simon Duffy

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