Simon Duffy

Thoughts, Bemusements & Arguments

Month: March 2015

The Marriage on the Mountain – Independent Living and Person-Centred Support

This is my fourth and final blog – written in honour of the Social Care Ideas Factory’s (SCIF) event – We Chose to Climb. This event has been one of the most interesting and positive events that I have ever had the honour of being involved in: great people, great talks and great conversations.

The event was, I think, an effort to bring together many threads of thought and action – and to bring together many different groups. I cannot do justice to the full wonderful human complexity of it all in this short blog; but I did get a feeling that, at last, we might be on the cusp of achieving two important marriages – marriages that have at times seemed so unlikely and yet marriages that would be so natural.

The first potential marriage is between the ideal of independent living and the ideal of person-centred support. These are not quite the same things, and they certainly have rather different histories; but there is, at their heart, such a commonality of purpose, that a marriage could be possible.

Independent living is a philosophy of being and action that has been developed by people with disabilities (for audiences outside the UK) or disabled people (for the UK audience).

[The hazards of forming this previous sentence give some indication of how difficult it is to write about any of these matters in a way that won’t upset someone, but I think it’s important that we remember that these ideas do exist in a global context – particularly as people with disabilities have worked very hard at ensuring that independent living is linked closely to the UN Convention on the Rights of Persons with Disabilities (UNCRPD).]

People with disabilities have been advocating for independent living for about 50 years – this is not an insignificant period of time.

There are some subtle differences of definition that can occur. Independent living is certainly very closely aligned to the idea of rights. As such it is an assertion that we have socio-economic rights (an idea that the current UK Government seems to have abandoned, but which is fundamental to the UN Charter on Human Rights). But it is also an assertion that these rights have to be sensitive to the many forms of discrimination or disadvantage that occur for people with disabilities. Perhaps most importantly, it is a challenge to the welfare system, that was developed in the era of Human Rights, after World War II, that these rights must be designed in ways which respect individual choices about lifestyle, relationships and identity.

Practically, independent living was the philosophy used, by many people with disabilities, to insist that they should not have to suffer institutional living, just because the welfare state had now absorbed institutional ‘care’ services.

The philosophy of independent living is also closely, sometimes perhaps too closely, identified with all sorts of positive service developments: personal assistance, accessible buildings and transport, direct payments or individual funding. These developments have all been very good, but one danger is that we confuse the philosophy of independent living with a particular mode of living – say, living in your own accessible flat, using direct payments and employing personal assistants. Independent living, in its true sense, means living as you wish, in the way that makes most sense to you, to your relationships, to your community and to your values – it is certainly not a prescribed lifestyle.

The concept of person-centred support is not the same as independent living; its roots are more diverse, and it is rarely treated as an explicit political goal in the same way as independent living has been. The term has taken root in counselling, in support for people with intellectual disabilities and in the world of dementia. As this suggests, it is an approach that seems helpful for people who might be disadvantaged because they have difficulty expressing themselves, making choices or find the right lifestyle for themselves. In practice, whether it is through planning, therapy, conversation or action, it is an effort to respect the identity of a person who might otherwise be ignored and erased from proper consideration.

Now I must be careful here – when I say that these two concepts might marry I do NOT mean that these concepts are the same or that they might be merged into one concept. Anyone who thinks that has not been married or has not paid attention to what a marriage is. A marriage is (or should) be a respectful union of two equals. Marriage involves, negotiation, love, mutual support and joint effort – for a common good. What I mean by marriage is that these two ideas might be used to complement one another and to develop a better understanding of common problems and shared solutions.

However, it is quite natural for many people with disabilities to be suspicious of person-centred support; for it may appear to be yet another ‘trick’ of the professional establishment to prod, poke and interfere with their lives. Accepting person-centred support might appear to be a false and unnecessary admission of weakness: Don’t give me person-centredness, give me control!

Yet the greatest danger of completely rejecting person-centred support is that it can narrow the world of disability considerably. Given natural human diversity and all the inevitable frailty of the human condition – all of us need assistance and those most like to face the barriers of disability are those who need assistance with communication or decision-making, those who are locked in anger, fear or sadness and those who suffering from illness or chronic health conditions. If our idea of disability is dominated only by the image of the wheelchair then the world of disability has been radically reduced.

At the heart of person-centred support is the bold assertion that everyone has value, everyone’s life is meaningful, everyone has something to contribute. This assertion is part philosophy – an ethical commitment to the equal value of all human beings – and part methodology – start by assuming value and you will find it.

So, my claim is, independent living needs person-centred support  because, without it, there is a grave danger that too many people with disabilities will be exiled to a place where they are deemed too disabled to be disabled. This is not right and it not helpful.

I also think that we must be careful not to rely too heavily upon our rights. Rights exist because duties exist – and human history tells us that, far too often, societies can quickly become blind to their duties and responsibilities. An awareness of right and duties does not flourish unless we are also aware of ourselves as interdependent beings, with innate value, and with multiple capacities to contribute – including the contribution to community that we make when we need assistance.

But person-centred support also needs independent living. There is a grave danger that person-centred support – which does just lack the same authentic roots as independent living – will morph into another professionalised approach, and will lose its way. We’ve certainly seen signs of this in England, where the institutionalisation of “person centred plans” as the new “care plans” promised so much, but has delivered so little. Person-centred support can open up new possibilities and offers the means to nurture mutual respect; but it is no replacement for robust rights, collective political action and practical peer support.

So, we can use both ideas, they are not the same, but they each offer something valuable and distinct.

There is a second marriage that would be useful, and that is the marriage of people and professionals. Again I do not mean to abandon the obvious differences that might exist between many millions of people on either side of that line (and the very many who stand with one foot on either side of that line). Self-identification as a person with a disability or in whatever group is useful, remains an essential first step toward claiming our rights. However, there are several reasons why a marriage between such diverse groups, might be advantageous.

First, there is the obvious political issue; for there is currently no assurance that there will be any professional services, of funding for personal assistance or for personal budgets. In England ‘adult social care’ has been cut by 30% in just four years – there is little point debating the niceties of the organisation of ‘adult social care’ or ‘personalisation’ when the whole edifice is crumbling around us.

Second, there is the call from many – both people and professionals – to drop many of the professional barriers, bureaucratic systems and undue regulations that make it more difficult for everyone to lead the best lives they can. These intrusive and ineffective controls have grown progressively over the years as trust between the front-line, management and politicians has declined.

The welfare state has become bureaucratic welfare. This situation will only be reversed when people with disabilities, families and professionals – together – start to insist upon and demonstrate the value of low-bureaucracy solutions.

Third, there is the fact that the capacity to collaborate collectively, across the professional boundary, will unleash some of the greatest innovations, support and community change. I see this in all of the best social innovations today – they are all the combination of a little money, a few employees, and a great release of creative action – rooted in community action.

The challenges of these marriages – of ideas and of people – are tremendous. They mean overcoming decades of mutual suspicion and misunderstanding. It means being able to think about problems from multiple perspectives. It means including others who might seem ‘too different’ to be included. But the risk of not achieving such a marriage is even greater.

Today, at the end of the conference, SCIF launched their next collaborative project – the Sherpas Union. This project will attempt to build an international movement of all those endeavouring to improve lives, for themselves, and for others. Perhaps it could be one means to promote the courtship between these different groups and these different ideas. It’s too early to predict, but I for one will try to do all I can to help out, and I have already applied to join.

On the Mountain – Roles or Relationships

Today the theme of second day of We Chose to Climb was clear and strong – not power – but relationships. The event itself was full of wonderful content – stimulating and moving – and again and again the presenters made the same point: what makes a positive difference is the reality of the relationship between two people.

And, after all – as Nick Andrews said: Who is helping who?

  • If I am Nadia’s personal assistant, am I helping her to get about and to communicate, or is she helping me to learn more and to earn a living?
  • If I am a social worker trying to establish a fair individual budget for Nadia, am I helping her or is she giving me an important paid job and the opportunity to develop?
  • If I am a senior manager organising disability services, am I helping her or is she giving me the means to have status and influence?

The answer is obvious – both are true – we help each other.

But actually that is not the critical question. The critical question is: Do we each behave as if we know that both are true?

I am afraid I have used this quote before – it is one of those observations I find so powerful:

He [Rebbe Shmelke] said: “The rich need the poor more than the poor need the rich. Unfortunately, neither is conscious of it.”

That is, interdependence is the only human reality. But if we don’t see our relationships as interdependent then we run the risk of creating a sense of worthless dependence on the one side and prideful disrespect on the other.

Of course good practitioners and professionals avoid this trap – everyday – they work with proper humility and respect – they understand the value of the other human being – in any circumstance.

What I think Self-Directed Support offers us is the opportunity to be more explicit about the true nature of that relationship. It does not aim to give the people who need assistance undue power over those who support them; instead it is as an effort to ensure that, when you need assistance, then you know that you are entitled to receive it and direct it. Receiving assistance should not feel like getting a charitable gift where the assistance is defined and controlled by someone else.

Rights are not at war with relationships – rights can restore us to proper relationship.

Self-directed support might be said to rebalance power relationships. Or perhaps better, self-directed support gives us the chance to build new forms of power together – in a relationship of equality.

But this is only the first step.

It is the human quality of that relationship that matters.

Sarah Taylor cited Martin Buber, one of the key thinkers of the twentieth century, who proposed that we can distinguish two radically different ways of relating ourselves to others:

The world is twofold for man in accordance with his twofold attitude.
The attitude of man is twofold in accordance with the two basic words he can speak.
The basic words are not single words but word pairs.
One basic world is the word pair I-Thou.
The other basic word is the word pair I-It; but this basic word is not changed when He or She takes the place of It.
Thus the I of man is also twofold.
For the I of the basic word I-Thou is different from that in the basic word I-It.

What Buber argues, in his classic I and Thou, is that there is all the difference in the world between seeing another person as just an object (may be a clever, active or pleasant object) and seeing them as a true person. For Buber this is connected to a theology that sees an element of God in everyone. But, even the non-religious, might recognise that, when we really connect with another person, we must be open to the power – the light – that burns within them.

This may seem a long way from the day-to-day realities of self-directed support, social work or personal assistance. But, up on the mountain, is this not the critical factor:

  • Can we rely on each other?
  • Do we trust each other?
  • Can we listen to each other?
  • Will we look after each other?

As Jamie Andrew explained to us this morning – the mountain can be beautiful, but it can also be a very dangerous place. You can die on the mountain. So – we need each other. But our pre-defined roles and expectations, our processes and our regulations, may simply not hack it on the mountain.

The only true security lies in our relationship with each other.

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.

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