Power and Love
Author: Simon Duffy
Thoughts on intentional community
I was surprised, but pleasantly surprised, to be approached by the Camphill Alliance to chair a seminar in Westminster: Choice for Intentional Community and Shared Living. My own life has been very much focused on helping people with learning difficulties to gain power, to achieve citizenship and to become part of mainstream society. I am certainly no expert on intentional community or shared living, but it was fascinating to explore together what we can learn from each other.
For those who don’t know, Camphill was founded in 1940 by Dr Karl Koenig, a Jewish Christian and a refugee from Nazi Austria. Koenig was also an 'anthroposophist,' that is a follower of the thinker Rudolf Steiner. Koenig was a doctor who was inspired by working with people with learning difficulties, and he went on to create distinct communities, where people with learning difficulties could live and work with others, as equals. There are now 100 Camphill communities in 23 countries.
Partially inspired by Koenig, Jean Vanier began the L’Arche movement in 1965 as an act of Christian vocation. He and others chose to help people with learning difficulties move from institutions into the community by sharing their own lives with them, and by growing and learning together. L’Arche also does not think of itself as a service provider, instead it aims to be a community of equals. L’Arche is also an international movement and supports people who either live together or who live in community networks.
The seminar brought together a wide range of people, including people with learning difficulties who lived and worked in these communities, along with families and other experts. For instance, one of the most striking presentations was given by Dr Marcus van Dam, a GP who serves Botton Village in North Yorkshire (a Camphill community). He described some of the health benefits experienced by those living at Botton in 2010:
- Instead of the average 28% rate of obesity for people with learning difficulties, Botton had a rate of only 15%
- Instead of the average 40% rate of mental illness for people with learning difficulties, Botton had a rate of only 15%
- Instead of the average 30% rate of use of psychotropic medicine by people with learning difficulties, Botton had a rate of only 12%
Dr van Dam suggested that these significant health improvements were probably the result of the collective lifestyle at Botton: where people worked together, ate together and lived together. [Research by Dr van Dam and others can be found at the Camphill Research Network.] However, worryingly, some of those health statistics had recently worsened, and Dr van Dam believed that this might be because of negative changes in the development of Botton Village.
James, Lucinda and Frank are three people with learning difficulties who live at Botton Village and they were very clear that they liked their lives. They valued its traditions and the opportunities it gave them to contribute and participate fully in village life. They valued the relationships they had formed and the length of time they had known their co-workers. They regretted that houses were starting to become empty and that the co-worker model was being changed. Lucinda even proposed that Botton should offer homes to Syrian refugees. Given that Camphill was founded by a Jewish refugee, during World War II, this seemed like a very powerful idea.
Dr Stuart Cumella shared some of the academic research on the benefits of village communities. For instance, Dr Cumella cited the important 1999 research, carried out by the team led by Professor Eric Emerson. I remember this research very well, for it had a big impact on the policy battles we were having with government. At that time campaigners disagreed between each other about which were the best models for people with learning disabilities. In particular, many of us felt that NHS campuses should be forced to close. NHS campuses were the institutions that had survived the first phase of deinstitutionalisation and the closure of the long-stay mental handicap hospitals. In reality they were often just new housing, sited on old institutional sites. Many of the old institutional practices remained firmly in place.
However defenders of the NHS campuses argued that these institutions were really ‘a kind of community’ just a different kind of community. But Professor Emerson’s research fatally undermined their case. The outcomes associated with NHS campus services were significantly worse than the outcomes of other 'services'. Eventually the Government was forced to accept the argument for closing NHS campuses; and it then began a (very slow) process of deinstitutionalisation.
However, as Dr Cumella observed, while the Emerson research was influential, nobody was very interested in the very positive outcomes that it demonstrated for people living in village communities. Nor I do remember hearing any voices from Camphill or L’Arche in those debates. Perhaps they were treated a special case: Christian organisations that could not be easily replicated in a secular society.
For many campaigners the end of the NHS campuses was also the end of their long battle against the institution - job done. But for others, like myself, this felt like just the beginning. We argued that institutionalisation did not end with the large institutions, but that it was rife in so-called 'community' services, or what the researchers had called ‘dispersed housing schemes.’ We believed that what people with learning difficulties wanted, needed and were entitled to was not ‘models of dispersed housing’ but:
- Relationships and love
- Work and contribution
- Real housing rights, including the right to own your own home
- Citizenship and full disability rights
- Self-determination, individualisation and empowerment
Instead of proposing new or better models of housing - we were argued that every person should have the right to make their own decisions, to control their own life and to live as they saw fit. In a sense, and this seems to me to be the fundamental point, we disagreed with the assumption that government and professionals should decide how people with learning difficulties lived. Rather, it was for people themselves, with the support of family and friends, to make those decisions - in the same way that everybody else does. It was not models people needed, but real lives.
The logical consequence of this different way of thinking was to propose that people needed an entitlement to social care that they could then control. In other words, this is why I developed ideas like personal budgets, so that everybody could decide, with the support they need, the best support solution for themselves. In fact, although I was a critic of residential care, I argued that, so long as residential care was legal, then it must also be a possible option for people with learning difficulties to choose. In fact, in one of the first pilots for personal budgets, 15 people in residential care used their budgets to leave residential care and move into homes of their own; however 1 person changed their minds and moved back into residential care.
As I saw it, our primary goal was to help people to get the necessary power in their lives to make their own decisions, in their own way. This was not because power or money was our ultimate goal. It doesn’t take much reflection on human nature to realise that most of us would give up all the power, money and fame in the world for just one spoonful of love. However, we need power in order to build the life that is right for us - and it is in this way that we are best able to build relationships of love, family and friendship.
In my book Keys to Citizenship I tried to describe this vision and to show the close connection between love and power. I encouraged people to take control of their own life and to explore all available options; but I also encouraged people to see that richer relationships and stronger community life were the proper end point for which all citizens should strive. You can’t be a citizen without serving your community; and you can’t have a real community without having free citizens who are willing build it. Or, as the great Jewish sage Hillel put it:
“If I am not for myself, who will be for me? But if I am only for myself, what am I?”
Personally, I have never lived in an intentional community, but I’ve always chosen to live with friends or family, never on my own. Also, while I don’t dislike cities, I would prefer to live in the country than the town. Most of my friends with learning difficulties have also wanted their own homes, and to live with people they choose, contributing to that messy and chaotic thing we call mainstream society. However I can also understand why some people might prefer to live in an intentional community like Camphill or L’Ache; and I certainly think people have the right to live in such communities.
What is power for if it is not to help us build better communities together?
Encouragingly, when we tested personal budgets we discovered that one of the main consequences of people having more power in their lives was, not loneliness, but community. This new found power gave many people the chance to strengthen their families, to form new relationships, to marry, to find friends or to contribute as citizens.
Power really did lead to community.
Yet, still today, most people living in so-called ‘community care services’ do not experience these good things and do not get the chance to enjoy community life; instead they lived in what Robin Jackson calls micro-institutions. For size was never the real issue; institutions are created when some people take control over the lives of other people (whether those people live together or separately). Size is not the issue, power is the issue; and we need decent communities in order to create and share power, in a spirit of equality and mutual respect.
Recent events have made me understand the importance of community even more sharply. Since 2010 the UK Government has targeted disabled people for cuts in income and support. As part of this process personalisation has unravelled and turned into a cost-cutting exercise. So far there has been little resistance to this. It is clear that people with learning difficulties - along with many other groups - cannot be truly empowered unless they can also resist injustice by the exercise of collective power.
If we want justice then we will need to work with trade unions, with other campaigners, and with community organisations. We cannot just hope that things that will just get better or hope that a nice politician will eventually win power. Oppression never ends on its own, it has to be resisted, and it must be resisted together. When oppression targets disabled people then resistance must mobilise disabled people, as disabled people. For as Hannah Arendt wrote:
“You can only defend yourself as the person you are being attacked as.”
It is in this difficult environment that we must welcome the desire of communities like Camphill and L’Arche to connect up and become part of a bigger conversation, and a bigger movement. They have so much to teach us. They are communities that have not forgotten that it is only together that we can be powerful. They are communities that know that an empowered individual is a contradiction in terms: we only create power together, anything else is bullying - not power.
And they are not alone. The story of intentional community does not end with these pioneering Christian movements. For instance, KeyRing was created by my friend Carl Poll (a committed atheist) who saw how powerful people with learning difficulties could be when they supported each other to live independently, connected in networks of peer support. More recent innovations like Local Area Coordination, Best Buddies and PFG in Doncaster, have also continued to demonstrate the power that comes when you start with community.
There is clear and strong evidence that the benefits of intentional community are very great. People flourish when they are in an environment of high trust, where taking risks is encouraged, and where their actions and contribution is welcomed and celebrated. People flourish when they feel secure and when there are in long-standing relationships where there is a real sharing of life.
This is a lesson that other organisations are learning. Last week I was lucky enough to be invited back to the organisation that I founded in Scotland: Inclusion. There I discovered that what people valued about support from Inclusion was the matching of personal assistants and the fact that Inclusion encouraged personal assistants to behave like human beings, to be open to sharing some or all of their lives together. Heresy as this is to some, what people valued most of all, was the relaxation of the professional boundaries. Sadly this is still all too rare in community services.
Of course this doesn’t mean intentional community is a panacea. History shows us all too clearly that the best idea and the most beautiful community can be corrupted. A particular risk for intentional communities is that they can lose perspective, by looking inward, and by becoming cut off from the wider community. I suspect that a good indication of a strong community is that it learns how to balance its need to take care of itself with a responsibility to look outward and to build bridges with others. A community that looks only inward will lose its identity and its integrity. Communities need other communities in order to truly thrive.
Today I hope we can move beyond a repetition of the old debates. We don’t need to decide who has the best community or the best service. Instead we must defend people’s right to get support and to choose the right solution for themselves.
In difficult times like these let’s not fall back on old fear and prejudices. Let’s risk reaching out to others and trying to build community together. Let’s celebrate and support all of those who seek to create community in all its many forms; but let us fight for our right to choose to build the community that makes the most sense for us.
Above all, let us welcome all of those at risk of losing community, losing citizenship, into our own communities whether they be people with disabilities or Syrian refugees.
The publisher is The Centre for Welfare Reform.
Power and Love © Simon Duffy 2015.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.