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 loneliness and isolation. Indeed, a recent report by the UCL Institute of Health Equity (IHE), who are led by Professor Sir Michael Marmot, has found that largely due to poverty, poor housing, social isolation and bullying, people with learning disabilities are dying 15-20 years earlier than the general population (Rickard & Donkin, 2018). It is important to note here that the probability of an early death from loneliness is about 45%, which is a higher risk than that of air pollution, obesity and excessive drinking (Cacioppo, 2013).
Furthermore, mainstream health and care services continue to be plagued by cases uncovering fundamental failings, which at worse, have led to appalling abuses of people with learning disabilities. The most recent of these to occur on the social care landscape was the 2011 Winterbourne View scandal in which the BBC current affairs programme, Panorama exposed the terrible abuse that was taking place at an assessment and treatment unit (ATU) for people with learning disabilities in Bristol. Not only this, but following the Panorama investigation, it was soon uncovered that the use of ATUs and other inpatient settings for people with learning disabilities, autism and mental health conditions was both routine and wide spread across England (Department of Health, 2012; Bubb, 2014).
So why, when the health and care sector itself can be deeply flawed, is the Camphill way of life that has successfully enabled people with learning disabilities to flourish for over 60 years become viewed by some as inappropriate, segregated and breaching people’s right to a ‘normal’ life?
The 2011 Winterbourne View scandal became a focal point for opposition to any form of care that might be described as ‘institutional’. The realisation that such abuses were happening in English services, and in the 21st century, shook the social care sector to its very core. Provider organisations are profoundly concerned about being associated in anyway with accusations of not complying with the standards set by the care regulatory authority, the Care Quality Commission (CQC).
Responding to Winterbourne View, as well as other health and care sector scandals such as that of Mid-Staffordshire Foundation Trust in the late 2000s, standards set by the CQC have been increasingly influenced by the Human Rights Act, legislation that places fundamental importance on the individual, and autonomy as the primary means by which people’s quality of life should be judged. The belief is that focusing on the individual rights of people in receipt of support can both empower them with control over their lives and also mitigate safeguarding risks, such as abuse and neglect, which people who rely on others for support can be vulnerable to.
A good example of how this autonomy is conceptualised in mainstream services is through paid work, as is outlined in similar legislation, the UN Convention on the Rights of Persons with Disabilities (CRPD). Article 27 of the Convention ‘recognises the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities’ (United Nations, 2006).
The type of work that is being promoted in mainstream services is overwhelmingly focused on defining the individual as a separate entity to those around them. This contrasts fundamentally with the Camphill ethos at Botton and some other (but not all) communities, where work – and so the individual – is thought of differently.
Work in Camphill includes biodynamic farming and landcare, work and workshops including woodwork, candle and glass making, baking and cheesemaking as well as restaurants and cafés that offer organic food. Work is something that virtually everyone contributes to as part of a whole. It provides a communal and material benefit to that whole. The aim is to remove the boundaries between able and disabled so that experiences of ability and disability do not define social relations.
Crucially, too, the work at Botton, as well as other Camphill communities, is not just the work on the land and in workshops, but also the work of living with others; of learning to understand, respect and ultimately accept even those with whom it may be testing to do so. It is these, often difficult and ongoing challenges of daily life, which are taken on and embraced under the Camphill ethos.
Which is why what has happened at Botton over the last few years, leading up to the court action and recent split, has been a very bitter pill to swallow for those members of the community who are devoted to continuing this way of life. What once was a thriving working community at Botton has been severely curtailed. The farming and workshop work is now very limited. The creamery that is renowned for its award-winning hand-crafted cheeses is struggling to meet demand from artisan shops around the country after milk production from the dairy herd has been slashed.
The CVT has cited safeguarding concerns as their reasons for restricting these activities that were previously the foundations of Botton community life. The abandoned land and workshops stand as a physical symbol for what is wrong with the contemporary concept of people with learning disabilities living the good life.
These tensions between different imperatives of care came to the fore elsewhere when in February 2018 the CQC attempted to stop the expansion of a provision for people with autism run by Centurion Health Care Limited (Centurion Health Care Ltd v CQC, 2018). The case was brought on the grounds that the service would be based in a rural setting and so would be restricting people from accessing mainstream and normal community life. The CQC first won, but then in October that year in a High Court appeal, Centurion was successful in overturning this decision.
This case elucidates how the regulator’s concern over the inappropriateness of congregate settings – that they can lead to loss of individuality and increase safeguarding risks – do not always take contextual factors into account. As a society – indeed, as human beings – what value measure should we use when we are attempting to support people to live what we view as a normal and good life? The service in question was planned for adults with autism who, because of their condition, experienced difficulty in engaging in busy environments. As such, situating the service in a rural setting, which was less than a mile away from a built-up town, suited the needs of people who would be receiving support.
The exposure of what happened at Winterbourne View, as well as many other settings around the country, has bolstered the existing ways in which health and care services are shaped by the philosophy underpinning individualism. This has also left a desire for better regulation and tighter safety rules in the social care sector and one way of achieving this has been to clamp down on places like the Camphill communities where shared living is preferred and there is less of a professional distinction between people giving and receiving support. This is understandable, but it raises important questions about what we mean by inclusion and a normal life.
Should the response to terrible scandals be to remove those remaining aspects from social care support that cannot be regulated or predicted, such as informal and intimate relations? Those types of relations that the Camphill communities pride themselves on being able to achieve within safe and accessible environments that foster togetherness. Paradoxically, it is this community inclusion that mainstream services have continually tried, yet failed, to attain for people who they support. Indeed, Sir Michael Marmot’s report mentioned above is a worrying indicator of how far this is from being achieved.
This is not to say that keeping people safe and empowering them as individuals in their own right are not necessary and important expectations in the context of learning disability support. Though perhaps we do need to consider the downside to overwhelmingly focusing on professionalism and individualism in care and acknowledge that these things can inhibit the human interaction that is key to reaching and helping people through knowing them in meaningful and important ways.
From my own research experience of spending time in learning disability support settings, I have observed how regulating and organising caring relations in ways that situate professionalism and individual autonomy as paramount can mean that those aspects of care that can be so central to wellbeing and sense of self, such as providing reassurance and comfort – for example, through something as basic as a hug – can potentially get removed from these relations. My research has shown how current policies may be unintentionally depriving people with learning disabilities from important emotional connections in their lives. Indeed, this is significant as there is some compelling research that discusses the importance of physical touch for not only social bonding, but as also being crucial in how we establish a sense of our human self in the world (McGlone, Wessberg & Olausson, 2014; Geddes, 2015).
What struck me about the events at Botton is how it speaks to wider issues in 21st century society relating to how we define care. As a society – indeed, as human beings – what value measure should we use when we are attempting to support people to live what we view as a normal and good life? Camphill, the communal setting, as a way of life is not the only way. But neither is it outdated. People should be allowed the option of a range of services, and living in a Camphill community should be one of these options.
Many vulnerable people, such as people with learning disabilities, will need support throughout their lives. There can be a problem with presenting what is good here in terms that set user autonomy as the central focus. The positioning of services in this way requires the people in receipt of support to make informed decisions about what is best for them. Part of the problem with this is that it assumes people will be able to know from the start what kind of care and support they want, need and will make them happy.
Alternative processes of care, ones in which the person along with the people supporting them work together in partnerships over time towards a shared goal are less about autonomy and choice and more about developing relationships through mutual human respect. Moreover, no matter what model we choose, the type of work involved in supporting vulnerable people will always be bound up in social relations that we cannot fully control, despite our benevolent desire to do so. There will always be potential for these relations to be undermined, and at worst exploited. But, perhaps this is the trade-off that we must accept if it means that people are given the opportunity to experience meaningful connections with others.
Importantly though, this is not about attempting to mask the ways that people’s disabilities can make them vulnerable and dependent. Rather it is about acceptance on a fundamental level of how vulnerability and dependency are integral to so much of what it is to be human. Thinking in these terms stops us from trying to conceal the lived experience of learning disability and instead enables the possibility to think about what is important in the lives of people living with this condition and then to put that at the centre of social relations. We must not be impeded by fears of risk, but rather take heed from communities, such as Camphill who, driven by the darkest moments in modern history, have fought to assert the value of all human life, and to define it in terms of authentic loving relations.
Carys Banks was the recipient of the 2016 Radcliffe-Brown/Sutasoma Award from the Royal Anthropological Institute (RAI).
Bubb, S. (2014). Winterbourne View - Time for Change. Transforming the commissioning of services for people with learning disabilities and/or autism. NHS England. Available from: https://www.england.nhs.uk/wp-content/uploads/2014/11/transforming-commissioning-services.pdf
Cacioppo, J. (2013, September 9). John Cacioppo: The Lethality of loneliness [Video file]. Available from: https://www.youtube.com/watch?v=_0hxl03JoA0
Centurion Health Care Ltd v CQC (2018). 3264.EA.
Department of Health (2001). Valuing People: a New Strategy for Learning Disability for the 21st Century. London, The Stationery Office.
Department of Health (2009). Valuing People Now: A New Three-Year Strategy for Learning Disabilities. London, The Stationery Office.
Department of Health (2012). Transforming care: a national response to Winterbourne View Hospital. London, The Stationery Office.
Geddes, L. (2015). Why your brain needs touch to make you human. New Scientist 3010. Available from: https://www.newscientist.com/article/mg22530100-500-why-your-brain-needs-touch-to-make-you-human/
McGlone, F., Wessberg, J., & Olausson, H. (2014). Discriminative & Affective Touch: Sensing & Feeling. Neuron 82: 737-755.
Rickard, W., & Donkin, A. (2018). A fair, supportive society: A social determinants of health approach to improving the lives and health of people living with disabilities. Available from: http://www.instituteofhealthequity.org/resources-reports/a-fair-supportive-society-summary-report/a-fair-supportive-society.pdf
United Nations (2006). Convention on the Rights of Persons with Disabilities. Available from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/optional-protocol-to-the-convention-on-the-rights-of-persons-with-disabilities.html
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