Dr Carys Banks PhD argues that we need to redefine what we mean by inclusion and a 'normal life' if we are to tackle the crisis of loneliness for people with a learning disability
In February 2014, a national news story broke about the problems facing the 60-year-old small rural community of Botton Village in North Yorkshire where support and work opportunities are provided for adults with learning disabilities in ways quite different from the mainstream model that currently exists in government-led UK-based social care support.
This story was of interest to me because it intersected with my own research area: exploring how UK government policy is experienced in the everyday practice of learning disability support settings. In discovering more about Botton, and the Camphill community of which it is a part, I came to realise that what was – and still is – happening to the Camphill movement stands as an important symbol of our time for so much of what can be wrong with mainstream conceptions of care and support in the 21st century.
The Camphill movement began in the 1940s when Karl König, an Austrian paediatrician and escapee from the Nazis, set up the first pioneering community in Scotland. Today, there are around 120 Camphill communities in over 20 countries and Botton Village, established in 1955, is the flagship of nine communities run by the Camphill Village Trust (CVT) charity.
Inspired by the philosophy of Rudolf Steiner, König wanted to emphasise the value of all human life and importance of social solidarity by showing that children and adults with learning disabilities – individuals considered at that time to be defined and limited entirely by their disability – could live meaningful and purposeful lives when they were supported in holistic educational and working environments.
A crucial aspect of this environment involves people with learning disabilities working and/or living alongside the people who support them. In the traditional Camphill ethos the people providing support known as ‘co-workers’ are not viewed and do not regard themselves as conventional employees. They work on a voluntary basis in exchange for accommodation, food and expenses. For some in Camphill community life, this distinction has been crucial as it defines the relationships with people with learning disabilities in terms of love and mutual respect rather than through a contractual obligation.
I was intrigued to learn that this ethos was viewed by some – both within and outside the organisation – as inappropriate and not in keeping with the mainstream models of support which champion individual autonomy and self-sufficiency as primary routes to the good life for people with learning disabilities. There was a view that Camphill community life was stopping people with learning disabilities from thriving in the community on their own terms.
In the context of mainstream services that tend to actively avoid personal relationships being formed between staff and people in receipt of support, there were also concerns about safeguarding risks for people with learning disabilities in an environment where the usual distinction between ‘cared for’ and ‘carer’ was blurred.
These and other pressures within the CVT led to the community of Botton being broken up into two separate villages in 2018, following a bitterly contested High Court action brought by families and co-workers who accused the management and Trustees of the CVT of abandoning the core principles of Camphill. As part of a mediated agreement, a new community under a different provider, the Avalon Shared Lives scheme, was formed and became known as the Esk Valley Camphill community. Geographically situated alongside the original CVT community in Botton, Esk Valley continues to adhere to the traditional Camphill ‘life-sharing model’.
It is worth noting that this tussle between one approach and others, which are determined by different regulatory pressures, has led to a variety of ways in how Camphill communities are now organised and run both in the UK and Ireland as well as across the world. In attempting to comply with government regulation whilst also retaining the core values underpinning their way of life, the Camphill movement is currently experiencing a challenging period of flux and evolution of how these values can be expressed in the 21st century. The friction in Ireland where there are a dozen communities is especially intense.
The clash between the Camphill ethos and mainstream approaches overlaps with my research which has been exploring how contemporary mainstream social care policy aims to empower people with learning disabilities, as much as possible, with certain kinds of independence and equal access to community life (Department of Health, 2001; 2009). There has been a large emphasis on enabling people with learning disabilities to become both active and responsible members of society: as active consumers with the ability to choose and purchase their care and support services in the marketplace, as well as responsible citizens with political rights in relation to the state (Department of Health, 2009).
Yet, despite these developments in policy, many people with learning disabilities remain extremely excluded from society, experiencing chronic lonelines