Simon Duffy

Thoughts, Bemusements & Arguments

Tag: Vanier

Why Is It So Hard? It’s Time for Action

Last year I was lucky enough to attend a ceremony in London where Jean Vanier received the Templeton Prize. Vanier (the founder of L’Arche and many other great initiatives) said to the assembled audience:

“There is a revolution going on. We are beginning to realise that everyone, every human being is important. We are beginning to see that every human being is beautiful. At the heart of this revolution are not the powerful, the wealthy or intelligent. It is people with disabilities who are showing us what is important – love, community and the freedom to be ourselves.”

This is so true. Despite austerity, despite confused and damaging Government policies, despite a culture of consumerism and ongoing prejudice – people with learning disabilities and their families continue to show that they not only belong, but they can lead the way to a better, more civilised and respectful society.

John O’Brien and Beth Mount, in their brilliant book Pathfinders, describe how the leadership that only people and families can provide, is constantly undermined by systems that keep people poor, drain them of energy and limit their potential. Yet even still, the sun keeps breaking through, for instance, they cite research from Canada where families were asked about the impact of the child with a disability in their lives:

  • More than 70% said their family was stronger
  • Almost 90% said that a wonderful person had come into their lives
  • Almost 90% said they’d learned what was really important in life
  • Over 50% said that they now laugh more

My rather childish response on first reading this was to shout: “Suck on that Peter Singer!” [Peter Singer being the eugenic philosopher who wrote Should the Baby Live? The Problem of Handicapped Infants.]

But it can still seem so hard. It can still seem so unfair. There are so many odds stacked up against families. Money continues to pour into dreadful institutional services – demeaning and abusing people. The system continues to control people, to place barriers before them and burdens on their backs.

Why is it so hard? Why do so many of the systems that should be there to help people get in the way, often doing harm, rather than good?

One concept that many of my friends and colleagues use to describe this problem is Serviceland – they picture the strange systems and assumptions of professionals, managers, social workers as a peculiar world unto itself. A world divorced from community, a world where limited assumptions have become normal, a world where small problems become huge barriers to change.

But while I recognise the truth of this description I also worry that if we are not careful we can end up further burdening families by failing to challenge services and professionals to offer the right kind of support. It may not be normal, but it is still quite possible for professionals to:

  • Listen properly and offer good advice
  • Form meaningful and supportive relationships
  • Organise assistance which the person and family can direct
  • Reduce the burdens on people’s backs

In fact I know many people who are doing this and I know many people who welcome this kind of respectful and effective support. Service providers and professionals are not the enemy – even if they spend too much time listening to the system and too little to people and families.

The question is then how can we get better at offering good help and assistance?

The most important answer to this is to put the person and their family in the driving seat. Professionals can only lead the way in emergency situations and for very short periods – ultimately power must reside with the person.

New systems of control, like direct payments and personal budgets, have made a difference here. It is now possible for people to take control and organise the support they need. This is good – it is a valid option – but surely it cannot be the case that the only way people and families can get good support is to do everything themselves.

We know that some service providers are able to offer what I’m going to call Personalised Support:

  • They work with the person to help them get a good life that has true meaning
  • They listen to the person and put them in control, but don’t leave them without support
  • They help people pick and manage their own assistants, and don’t force them to be employers
  • They create systems that are tailored to the person and keep them safe
  • They respect and protect the person’s money, they know that they work for the person

I know that there are organisations and supporters working like this all over the world. I’ve met them in Scotland, England, Canada, the USA, Finland, Australia and New Zealand and I’m sure they are many more elsewhere. There are not enough, but these kinds of organisations do exist and we need to develop more of them.

It is for this reason that the Centre for Welfare Reform has decided to start actively supporting the kinds of change that will make a real difference to people and families. Not just for people with learning disabilities, but also for older people, children, people with physical and mental health problems and many more. It is time for us to start to learn from each other – to share best practice and to set our standards higher.

To begin this process we have launched an international survey to begin to map and measure good practice in Personalised Support around the world. This first survey is targeted at service providers – we want to find out who out there is trying to do this right and what they’ve achieved so far. We want to understand the problems people face – so we can begin to work together to move things forward.

If you are a service provider then please complete our survey.

[No longer active – survey is finished – report due soon]

If you know a good service provider or an organisation trying to change then please share the survey with them too.

We are already well into the 21st Century. We cannot keep waiting for change to begin. We must start acting according to our values and beliefs. If we say that people are full citizens, if we believe in inclusion and community, then we need to get organised and start to do the work.

There is a Revolution Going On

There is a revolution going on. We are beginning to realise that everyone, every human being is important. We are beginning to see that every human being is beautiful. At the heart of this revolution are not the powerful, the wealthy or intelligent. It is people with disabilities who are showing us what is important – love, community and the freedom to be ourselves.

This was the message of Jean Vanier as he received the Templeton Prize – at St Martins in the Fields on Monday evening. His acceptance speech was powerful and direct.
For me it was a blessing to feel the blast of his optimism. As he said, in 1945 we had Hiroshima and the uncovering of Auschwitz; and of course we don’t have to look too hard to see further ugliness. But surely he is right to claim that something of importance did happen then – a new chapter did open. Not only did we begin to recognise the importance of human rights but also – slowly, all too slowly – we began the liberation of all those ‘others’ who had been trapped in institutions, deemed unworthy, by a society that had lost its moral compass.
This is a particular blessing only a few days after a UK General Election when the worst government in 75 years – a Government that has targeted disabled people for cuts and chosen to impoverish the poor – has been returned to power. Vanier captures exactly the fundamental flaw in the thinking and behaviour of the powerful – they behave as if the point of life is to climb higher and higher, to even clamber up upon the backs of the weak. But where are they going? What will they find when they get there? They will be empty and alone.
What must we do about our leaders, who are lost? Well – to begin with he suggests – we must pray for them.
A powerful message for me at least – for I know my own pride is such that I’d like nothing better than to enumerate their many failings. But he is right. They are lost. They know not what they do. Their cleverness is ultimately at their own expense – however many years in power they gain, however big the pile of money they amass. There is no joy in it. There is no beauty in it.
Despite our current problems I do not believe the current attack upon the human rights, the welfare state and justice will succeed. We have come too far to turn back to the hell that we’ve left behind. There are still signs of hope, amidst the darkness.
I have been particularly inspired by how many people have come together to support Learning Disability Alliance England since its creation in the Autumn of 2014. In just a few months we’ve united hundreds of people and organisations in a movement to stick up for the rights of people with learning disabilities. And this movement has been led by people with learning disabilities – friends like Karen Flood, Simon Cramp and Gary Bourlet have called upon different people to unite and work together. They have welcomed the respectful support of families, professionals and other allies. They’ve shown how much can be achieved when we come together in community.
This was so striking when we ran the Citizen Jury event to mark the political parties. It is true that the Conservative Party refused to attend (given their record this is not too surprising); but the others who attended, including Labour’s disability spokesperson Kate Green, engaged in an intense and respectful debate with people with learning disabilities and their families about the details of policy.
An old friend of mine, Virginia Moffatt (now at Ekklesia) reminded me that back in 1992 when she’d suggested that there be a hustings for people with learning disabilities in Southwark (where we both worked) that she had been faced with blank incomprehension. Today we are capable of having real and important debates with senior politicians. The election result may not have gone the way LDA England would have liked – but life is not always about winning and getting what you want. This development still marks another important step towards full citizenship for people with learning disabilities.
I am also encouraged by an event just a few days away – the wonderful punk rock band PKN – a band made up of people with learning disabilities – will be representing Finland at the Eurovision Song Contest. [Please cast your vote!] Again people with learning disabilities are refusing to be held back by other people’s ideas about what they can and cannot do. I have also just learned that Gavin Harding, a leading self-advocate with learning disabilities, has just become Mayor of Selby.
For me Vanier has already had a tremendous impact on my own thinking. In his commentary on the Gospel of St John Vanier writes:

Frequently it is only when those who are powerful experience failure, sickness, weakness or loneliness that they discover they are not self-sufficient and all-powerful, and that they need God and others. Out of their weakness and poverty they can then cry out to God and discover God in a new way as the God of love and tenderness, full of compassion and goodness.

I must say that for myself it has been a transformation to be in L’Arche. When I founded l’Arche it was to “be good” and to “do good” to people with disabilities. I had no idea how these people were going to do good to me! A bishop once told me: “You in L’Arche are responsible for a Copernican revolution: up until now we used to say that we should do good to the poor. You are saying that poor are doing good to you!” The people we are healing are in fact healing us, even if they do not realise it. They call us to love and awaken within us what is most precious: compassion.

Trying to ‘do good’ can quickly be a trap – it becomes about us, our pride, our glory, our achievements – and we can quickly tire and turn to blaming others. When we’re tempted in this way, we must see how empty all of this is. We all know we must die, and all our moments of power and glory are just vanities – that quickly pass away. What abides – is love.
Personally I am interested in exploring further what this Copernican revolution might look like for the welfare state as a whole. How can we live together in a way that accepts and honours mutual dependency? How can we invite contribution and challenge from those of whom society expects too little? How can we live in community? As Vanier says we need community, but real community is mucky, a little bit crazy and often quite annoying. But it is only this kind of community that can create the beauty, truth and the love we all need.
These kinds of questions demand that we reconsider many of our common assumptions about how best to organise society and the welfare state:
Income security – Does it make sense to impose the highest taxes on the poorest, and to load people with stigma or try and control them with sanctions and the patronising Work Programme?
Education – Why do we need to regulate teachers and schools as if Whitehall knows best? Why do we rank and exclude children who need more help to learn?
Health – Why do we heap unrealistic expectation on doctors and nurses? Why do we keep people in hospital when they would thrive better at home or in community?
Disability – Why do we force people to give up freedom just because they need some assistance? Why do we load special taxes on disabled people and the elderly?
Housing – Why are only some able to buy their own home? Why is it acceptable that some people can no longer be able to afford to live in their own communities because prices or rents have gone up?
The social problems we face today reflect the challenges Vanier describes. Justice means not just a fair set of rules and rights which individuals enable people to live decent lives; much more it means living together, valuing each other and creating a better world.
I will end with the Benediction (blessing) which was composed by Jean Vanier’s sister Therese and which ended the award ceremony:

May oppressed people and those who oppress them, free each other.
May those who are disabled and those who think they are not, help each other.
May those who need someone to listen, touch the hearts of those who are too busy.
May the homeless bring joy to those who open their doors reluctantly.
May the lonely heal those who think they are self-sufficient.
May the poor melt the hearts of the rich.
May seekers of truth give life to those who are satisfied that they have found it.
May the dying who do not wish to die be comforted by those who find it hard to live.
May the unloved be allowed to unlock the hearts of those who cannot love.
May prisoners find true freedom and liberate others from fear.
May those who sleep on the streets share their gentleness with those who cannot understand them.
May the hungry tear the veil from those who do not hunger after justice.
May those who live without hope, cleanse the hearts of their brothers and sisters who are afraid to live.
May the weak confound the strong and save them.
May violence be overcome with compassion.
May violence be absorbed by men and women of peace.
May violence succumb to those who are totally vulnerable, that we may be healed.

Amen

Who is Strong and Who is Weak?

This week I was lucky enough to be invited to hear Jean Vanier speak. For those of you who do not know of Vanier, he is the founder of the L’Arche movement that encourages people with and without learning disabilities to live together as equals. He is also a Christian philosopher and he was joined on the platform by Cardinal Vincent Nichols and Archbishop Justin Welby.

The title of the talk was “Living together for the common good: why do the strong need the weak?” and the event was sponsored by Together for the Common Good – an ecumenical movement to advance social justice.

However Vanier’s starting point is not ‘What makes us strong?’ instead he asks ‘What makes us human?”

He reflects on the Enlightenment account of humanity, with its ideal of the rational, competent and goal-achieving human. This ideal is central to modern thinking about the self, morality and politics – it is the all-important ‘rational I’. But he observed how self-defeating this ideal becomes. The more an individual advances, the more he must leave others behind; the more we worship such individual striving, the more people we must condemned to be left behind. We think we are building, while we’re merely destroying.

Instead, for Vanier, we must begin with acceptance and love as St Paul understands it:

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.” [1 Corinthians 13:4-7]

For me this was one of the most memorable points in the evening, where Vanier – using a text that is so often rushed – points out that what comes first is patience. The modern view of love so often misses this point – it slips into that dangerous Enlightenment mode where all the focus is on what we do in the name of love. Love becomes another badge that we try to award ourselves.

We strive to do, to change, to improve – yet so often we fail to just be with each other, to meet each other and to accept each other. Movingly, Vanier told the story of a male prostitute in Australia, who, dying in the arms of a member of L’Arche, said:

You’ve always wanted to change me; but you’ve never met me.

In the process of fixing others we lose sight of our very humanity – our essential fragility, our need for love, for belonging and contribution. Humanism becomes inhuman.

This reminded me of my first experience of people with learning disabilities, in an institution in the south of England. The place and the behaviour of the staff, struck me with horror, but the more important experience for me was that it offered me a different way of being human. I was a highly competitive young man, with some modest academic abilities, and a raging desire to work, to achieve and to win. Yet, here were people taken out of that rat race, and yet fully human. Here was goodness, calmness, dignity, care, curiosity, play, challenge, suffering, and fear. Here were people who were certainly different, but wonderfully so.

For me this experience challenged my notion of who I was and what was the purpose of my life. However, paradoxically, it also turned into a mission which, for better or worse, has driven most of my decisions over the last 25 years. So I worked to help people leave institutions, take control of their lives, make friends, contribute to community – to become full citizens. It became a project – and in the light of Vanier’s critique I can see that this project is also full of dangers. It can lead one into a feeling of self-importance and it tempts one to see others as the means by which your goals can be achieved.

Vainer’s approach is different. As he put it, the mission of L’Arche is less about what it achieves (although it achieves a lot) but more about the message that is inherent in its way of being – that we must meet together as fellow humans. For in the meeting of the ‘strong’ and the ‘weak’ each are transformed. The weak may be supported, but the strong also get the chance to find out what really matters and who they really are.

In fact nobody is really ‘weak’ or ‘strong’. Instead the desire to be amongst the strong, and to avoid the weak, is just a symptom of a society’s failure to welcome all and to comprehend the true value of each individual. We are like little kids wanting to be picked for the team we think will win – and so we allow ourselves to be judged by the wrong values. We even score ourselves by these distorted values – forgetting what is really important to us, focusing instead on what is important to ‘them’.

The discussion after Vanier’s talk was also fascinating – less for its content, more for the tensions and paradoxes it revealed.

The setting was important. We were tucked away in a corner of the Houses of Parliament, surrounded by images of splendour and power. The room was packed with famous faces – journalists, Lords, politicians and others from amongst the powerful. The discussion was led by Sarah Montague – of Radio 4’s famously combative and Westminster-centric Today Programme – who, revealingly, said she thought she knew most of the people in the room (although she certainly didn’t know me, and I met one Lord who certainly didn’t know her). In other words, we were at home, amongst the strong.

Montague then endeavoured, with minimal success, to play devil’s advocate and to encourage a lively discussion in the normal style. However the Philosopher, Cardinal and Archbishop all refused to play along. Instead they reflected on the need for time, discussion and humility in the political process.

Vanier refused to play ‘political advisor’ or ‘expert’ and in this refusal he lived his principles. Yet for Montague, and I think for some others in this room, this seemed deeply disappointing and frustrating. They wanted answers, solutions and policies. They were the strong and they wanted something to give them more strength – whether it was food they could consume (the latest good idea) or at least a good argument, a test of strength.

For modern politics demands that the powerful are constantly mindful of their appearance in the media and they must, at all times, maintain the illusion that they are competent to solve any problem. The powerful are caught in an impossible trap – for they must present themselves as the answer to any question we might ask. They are the folk who stand atop the crazy pinnacle of the world that Vanier wants us to reject: a world where one can only advance by standing on the back of the other.

It is important to note that Vanier is far from attacking government, the powerful, the professional experts or the policy-makers. He is not saying they are wrong, stupid or evil. Instead he is acting out the very issue he wants people to understand: we must meet each other; we do not need to use each other.

For myself the event also cast some light on my own dilemmas. I set up The Centre for Welfare Reform in 2009 with the goal of creating an independent community to develop positive and just solutions for the problems of the welfare state. I wanted to protect and support the social innovators who were often squeezed and abused by a political system that doesn’t know how to respect the integrity of things. Yet, it has been much harder to do this than I expected.

Instead, since 2010, my work has been dominated by a goal that I certainly didn’t want – to campaign against the injustice of the current UK Government. I expected others to do this – yet I’ve found that there has been no significant defence against cuts and policy changes that target and abuse disabled people – including people with learning disabilities – even though disabled people are the number one target for cuts by Government. I wanted to be developing better solutions; instead I’ve found myself more often simply defending basic rights.

I’m not sure what this means for me personally, but the image of Vanier reminded me that the world is not a puzzle to be solved. We must live and act with integrity and love. We cannot hope to be the answer to every question. We must be true to our own gifts and find the role that is right for us.

If I had one frustration in all of this it was simply that it was so hard to challenge the rather strange assumption in the home of the powerful that that it was they – the powerful – who could be trusted to act in the best interests of people with learning disabilities.

Does it makes sense to assume the abuser will reform himself?

Today I am working as hard as I can to develop Learning Disability Alliance England – a campaigning group that brings together all the key organisations for people with learning disabilities. I do this because I feel that it is not enough to offer Government good ideas. It is not enough to wait for the powerful to want to do what is right.

I do not have enough faith that the powerful, on their own, can learn the necessary humility to transform themselves. I feel that those of us who are weak must organise ourselves to demonstrate that we are not irrelevant, redundant or unworthy. I remember the words of Rebbe Shmelke who said:

The rich need the poor more than the poor need the rich. Unfortunately, neither is conscious of it.

I do believe the ‘strong’ need the weak, but I also believe the weak need to find and express their strength – a strength which is greater than the strength of the strong if it is a strength founded in love, community and justice.

I think that Vanier’s challenge is right – his thinking and his actions maintain integrity in their humility and their orientation to the actual meeting of humans. But I also feel that the ‘weak’ cannot afford to wait for the ‘strong’ to wake up to their true needs. Mental handicap ‘hospitals’, like the one I visited, and which as Vanier rightly said “crush disabled people” had to be closed. The reason they were closed was because families, disabled people and their allies came together to work and to lobby to bring about their closure. It did not happen by accident or because of some politician.

Sometimes we do need to lobby, to organise and to join the political process. It may be dysfunctional and confused – but unless disabled people and families are present in that process too – just as they should be present at every other level of community life – then they will not be able to defend their rights or interests. The presence of people with learning disabilities within the political process may even bring some honesty and humility to that strange world.

One final thought: if you read this before 11th February 2015 please complete our survey to Quality Check Government. [Now closed]

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