Living together: discourses on home and competence in an inclusive community in Kent Caroline Bennett Submitted in partial fulfillment for the degree of Master of Arts in Visual Anthropology School of Anthropology and Conservation, University of Kent 2011
Living together: discourses on home and competence in an inclusive community in Kent Caroline Bennett 15,297 words
Submitted in partial fulfillment for the degree of Master of Arts in Visual Anthropology School of Anthropology and Conservation, University of Kent 2011
Freedom of choice in how to live your life does not sound revolutionary. However, in the lives of many people with learning disabilities, other people often make these choices for them. L’Arche Kent is a community in which both people with and without learning disabilities ‘choose to live and make a home together’ (L’Arche Kent 2011: emphasis added). Undertaking fieldwork in this community, this project explores concepts of home and community, and examines wider discourses associated with choice in this matter -‐ concepts of competence affecting notions of human status and personhood. This research shows that it is through living together in a community that recognises and accepts difference that L’Arche Kent is able to support people with and without disabilities to become integral parts of that community, and it is through this participation that people are recognized as competent adults, capable not only of making choices and decisions, but also of directing their lives and the relationships within it. The production of an integral ethnographic film enables a collaborative ‘shared anthropology’, which attempts to dispel some of the stereotypes surrounding people with learning disabilities as people requiring pity and care, people to be admired (Shwartz et al. 2010), or people who are ‘less than human’ (Jenkins 1993: 17).
This project would not have been possible without the help and support of so many people who are too numerous to name but who were integral. If your name is not mentioned here, please read it between the lines.
I am, of course, indebted to the community of L’Arche Kent. Thank you for opening your doors and making me welcome. I am especially grateful to everyone at Cana House for never allowing me to feel anything other than at home.
Thank you to the anthropology department at the University of Kent, in particular to Glenn Bowman for his invaluable input and support throughout the year, to Mike Poltorak for his continued encouragement, and to Matt Hodges for forcing me to question everything and accept nothing.
And of course to my family and friends who never stop listening.
In the words of Disraeli: I feel a very unusual sensation -‐ if it is not indigestion, I think it must be gratitude.
A note on language
Research aims and questions
A note on consent
Analysis and feedback
Background and methodology
The houses of L’Arche Kent
The people of L’Arche Kent
A ‘family-‐like’ environment
Challenges to creating home
Home and community
The benefits of community
The risks of community
On competence, equality and normality
What is normality?
Can there be equality?
On home and community
Introduction In September 2010 I visited a photographic exhibition held by a community of artesans living and working in Canterbury. Nothing unusual in that. Except that this community was L’Arche Kent: a community where people with and without learning disabilities ‘choose to belong and create a home together’ (L’Arche Kent 2011). Having worked in supported housing in the past, I recognised the uniqueness of a community where people with learning disabilities choose their home and their companions in the same way as do non-‐disabled people, and where non-‐disabled people choose to have their home with disabled people rather than being only employed carers and companions.
Despite social and legislative drives in the UK towards ‘independent’ living, advocacy of equal opportunities, and the widespread adoption of the argument that disability (both physical and intellectual) is a social production not a medical fact (Feldmeier White 2002; Ward & Flynn 1994), people with learning disabilities remain disempowered, often still being viewed as ‘less than human … [as people with] perpetual childhood and innocence’ (Jenkins 1993: 17); people whose competence does not afford them full adult human status and the rights associated with this.
Independent living for many people in the UK with learning disabilities involves living in Supported Housing, choice of which is usually made by guardians (Clear & Horsfall 1997). Non-‐disabled people in these communities are primarily paid personnel, and relationships between staff and residents are therefore 6
controlled and constrained by professional boundaries. L’Arche however, values friendships and relationships within the community, and believes that ‘it is people that matter; to love and care for the people that are there, just as they are.’ (Vanier 1979: 20: emphasis added). The community is constructed on the ethos that every individual is a valued contributing member of the community, and difference is to be acknowledged and accepted.
As Jenkins (1993: 20) states:
Wherever they live… people with learning difficulties will continue to have to contend … with beliefs and practices which undermine or deny their dignity and value as persons. These illuminate deep-‐rooted cultural concerns about the definition of humanity….
L’Arche Kent offers a unique opportunity to explore a portion of the UK population where perhaps this is not the case: where people with learning disabilities are ostensibly afforded equal status with non-‐disabled people. This presents the opportunity to explore concepts surrounding the attribution of human status to individuals, of personhood, competence and choice for people with learning disabilities; if and how these are constructed, reconstructed, reinforced and maintained through living in the community of L’Arche.
Disability and the place of disabled and other excluded people within society has long been a personal interest. This research builds on that conducted for my undergraduate degree (Bennett 2000) and on other previous research undertaken on disability and inclusion (Bennett 2004).
Little research has been conducted previously research on living choices for disabled people; although Rodman & Cooper (1995) examined the affect of accessibility discourses on the identity of disabled people living in co-‐operatives in Canada, Morris (1994) explored independent living for people with physical disabilities, and Davies & Jenkins (1993) looked at discourses within families when people with learning disabilities leave home, there is a need for research examining the choices surrounding home for people with learning disabilities, and what this can tell us more generally about attributes of humanness in the UK, because it is in the study of the particular that wider comments can be made (Abu Lughod 1991). This study aims to fill part of this gap along with an identified gap in learning disability research: that of participatory multi-‐method research examining life experiences of people with learning disabilities rather than simply investigating professional practice (Connor et al. 2011).
This dissertation consists of two parts: this written thesis, and a short film about the L’Arche Kent community1. These can be viewed as stand alone entities but also as complementary formats of dissertation presentation. The film was produced collaboratively with the community: in particular with one disabled member. Submitting a collaboratively produced film as part of this dissertation fulfils four aims of this research: to provide an alternative form of knowledge transmission and understanding; to produce an accessible form of the thesis to give back to the research community; to enable the community of L’Arche Kent to direct and control the knowledge being exported about them;
1 The film Living Together is included with this dissertation.
but most importantly, to enable the voice of a perhaps otherwise excluded minority to be heard and thereby to discuss competence in an alternative form through shared production. The written thesis meanwhile offers a more theoretical discussion and is aimed at a more academic audience.
This written thesis is separated into five main sections. After a brief outline of research methodologies, I will introduce L’Arche Kent: the international community of which it is part, the institutional set-‐up, daily routines, and the people who call it home. Following this I will examine concepts of home and community within L’Arche Kent, before exploring notions of competence, equality and normality. Findings will be discussed within each section, before drawing conclusions to the research.
As this study will show, it is within the community that identity can be expressed, and where people are recognized for their individual attributions rather than by their disabilities. The community is therefore central to the acknowledgment of competence and personhood of people with learning disabilities. How it achieves this is explored in both the film and written thesis.
A note on language
Language is difficult. As Jackson (1995: 5) comments ‘life cannot be pressed into the service of language’. And yet it is our main form of expression in academia and so must be used.
Definition and labelling of people is unavoidably discriminatory, done as it is by one group of another (ibid: 14). An adequate term to describe the plethora of disorders and impairments that constitute learning disabilities does not exist: acceptable terms are debated throughout the world and even within populations definitions are inconsistent (Davies & Jenkins 1997). The term learning disability is itself problematic. Disability implies negative capacities: a problem: a difficulty. Learning meanwhile suggests that the impairment is with the ability to take on new information. In many cases this is true, however, there are also cases where people learn very well. The term was introduced in the UK to replace ‘mental handicap’, although other terms are also commonly used: People First, an advocacy group for people in the UK uses the term ‘learning difficulties’, whilst professional agencies in the UK argue that ‘learning difficulties’ and ‘learning disabilities’ are different (BILD 2010). In academic literature the term ‘intellectual disability’ is becoming more common, and internationally the term ‘mental disability’ or even ‘mental handicap’ can still be heard2.
For a more in-‐depth debate on the term learning disability readers are directed to Sleeter (2010 ) and Connor and Ferri (2010).
Within L’Arche the language used is very deliberately chosen to prevent segregation and hierarchy: people with learning disabilities are ‘core members’, whilst non-‐disabled people are ‘assistants’. For the purpose of this thesis I will use the terms ‘core member’ and ‘assistant’ when referring to people within the L’Arche community, and ‘people with learning disabilities’ for more general points, where a learning disability is defined according to the World Health Organisation’s definition (2001):
a state of arrested or incomplete development of mind… significant impairment of intellectual functioning [and] significant impairment of adaptive/social functioning.
Background and methodology
Until recently, the anthropological literature on learning disability remained sparse. Much of the literature that exists explores discourses on identity (for example Brueggemann et al. 2001, Feldmeier White 2002, Jenkins 1993, Moser 2006, Woodill 1994). Transitions into adulthood are another favoured topic, as this indicates the moment of individuation in the eyes of many non-‐disabled people. In their study of young adults with learning disabilities, Davies and Jenkins (1997) showed how self-‐identity is primarily formed via embodied experience, whilst external discourses had no great effect. This is in direct contrast to people with mental health issues (Desjarlais 2000), or physical disabilities (Abberley 1994), who are not only aware of the external discourses surrounding their identity, but actively engage or disengage in these. However, there is very little existing that examines the life experiences of people with learning disabilities. Even within the field of disability studies, virtually no literature exists on this subject, and in an examination of research within learning disabilities studies (for which at least four specific academic journals exist), Connor et al. (2011) found that in 2008, 91% of articles used solely quantitative research methods, primarily to examine professional practice and special educational theory, and only two articles involved people with learning disabilities in the research.
This project has the potential to help fill those gaps. In a community of both disabled and non-‐disabled people, both were given equal attention and access 12
to the research, but more significantly, the filmed thesis was produced in collaboration with someone with learning disabilities.
Research aims and questions
This project aims to explore concepts of home and community and how these relate to notions of competence and the attribution of human status to individuals within L’Arche Kent. Exploring experiences of both disabled and non-‐disabled people, the following questions were asked:
How do people live their lives in L’Arche Kent? How does this reflect ideas of ‘home’ and ‘community’?
How is competence constructed, reinforced and experienced in L’Arche?
Does living in L’Arche Kent tell us anything more widely about ideas of competence, independence and human status for people with learning disabilities?
The research explores whether ideas of individual competence relate to the value and status of people with learning disabilities as autonomous individuals. This enables a wider discussion of the concept of personhood; the factors necessary for its attribution to other people, and differences in attribution between disabled people and non-‐disabled people. These facilitate a broad examination of the idea of equality of disabled people, which is so often advocated, but rarely achieved.
Based on fieldwork conducted between April and July 2011, multi-‐variant research methods were used to provide a holistic study that is of use to the collaborating community as well as the author, and provides equal access and opportunity to both disabled and non-‐disabled people to participate in and direct the research conducted. The research took place in four stages: initial participant observation and informal conversations; filmed observation and semi-‐structured interviews; data analysis, and film editing, write up and feedback.
The L’Arche Kent community consists of 102 people across the county. I was keen to involve a wide proportion of this community within my research for two reasons: because the community is the central defining feature of L’Arche Kent, and because despite a shared ethos, each of the separate houses works very differently, and individuals within the houses even more so.
Unlike some (Sixsmith et al. 2003), I had no issues accessing the community. I was fortunate that Cana House, a house of 12 people in Eythorne, Kent, welcomed me from the beginning and provided me links within the community. I was immediately given the role of assistant, companion, escort and friend. It is from this house that the majority of my observations derived and my key informants were identified; three people here became key collaborators: two
assistants and one core member. I also visited other houses, community gatherings, and was fortunate in being able to attend a gathering of L’Arche UK in Manchester in July.
Because the wider imagined community of L’Arche is so integral to this research, I was keen to reflect this and the ethos of welcome within L’Arche by involving whoever wished to participate. I sent invitations for interviewees out across the community and was contacted by several people. In addition to my key informants I interviewed 13 other people, two of whom are core members. All these interviews were filmed. Names were kept on the film but have been changed throughout this written thesis. The interviews consisted of a mixture of individual and group discussions: several people wanted to be involved but did not want to be individually interviewed and so took part in group discussions. This reflects two aspects of the research: the presence of a camera made some people uncomfortable and they felt more secure within a group, but more significantly, people within the L’Arche community lead busy lives often surrounded by noise and chaos, and group interviews enabled the research to be conducted without taking too much time out of rest and private time.
I found group interviews to be a useful technique in encouraging people to think through their own thoughts in the short timescale required by this research. Whilst I was unable to interview many people more than once, interviewing in a group enabled people to bounce ideas off one another and question each other’s answers. It also enabled me to avoid ‘directing’ answers, 15
although of course it did not prevent other participants from doing this. Group discussions enable an insight into people’s shared understandings, although there can be a risk that people will not provide negative information, especially if the interviews occur with supervisors or leaders (Bernard 1995: 226; 227). To help negate this I ensured that where possible group interviews took place between contemporaries of equal working status.
A note on consent
Informed consent was a concern during my research. I was often questioned on this issue from people outside the community: Whom had I sought it from? How did I ensure I was not exploitative? How did I ensure consent was maintained throughout the process?
These inquiries are telling about wider attitudes towards people with learning disabilities. No-‐one seemed to doubt that for non-‐disabled people decisions would be individually decided and respected. However, there was a wider assumption that core members would not be able to understand what I was doing and why, would not be competent in making decisions of participation, nor would they remain competent in this decision-‐making.
I approached consent in the same way for everyone whether they are disabled or not: if I was filming I asked permission of each individual, assumed each was capable of making this decision, and respected the decisions made by not then checking them with anyone else. In fact consent was one of the first areas
where the attribution of full competence of people with learning disabilities was apparent within L’Arche: I was never once directed to managers or assistants for consent, but to each individual separately. To me this formed an important part of my own work: I was committed to providing a platform for people with learning disabilities to be involved in their own research, and this was only possible if I respected their competence in this matter.
The use of visual research methods was particularly important for this project. Some of the members of L’Arche Kent are non-‐verbal and non-‐literate, consequently a method was required which enabled collaboration in a non-‐ textual / verbal format. Film allowed this, and encouraged a more equal contribution from people who speak and those who do not. Film has also been shown to be an effective method of dispelling stereotypes of disabled people (Schwartz et al 2010), as well as offering a means of representing the visual acquisition of knowledge that occurs in non-‐verbal people (Pink 2003). The production of a collaboratively produced film therefore enabled the community to voice their own opinions, and also to effect, control and consciously direct the knowledge being exported elsewhere (Pink 2007). This helps balance the ethnographer-‐informant relationship, as well as the view of people with learning disabilities as ‘less-‐than human’ (Jenkins 1993: 17). Filming therefore allowed people to engage in the research in a way that a text-‐based project would not, especially in the case of non-‐verbal and non-‐literate people.
It was important to me that the filming was a collaborative affair and did not intrude too much on people’s lives. I spent several weeks within the community before I started filming and I was lucky that many people were keen to be involved. In addition to my filming, two core members borrowed cameras to film their own lives, and many other people took part in the filming on an ad hoc basis. The resulting footage is not only used in the filmed thesis, but will also form several short films to be used on the L’Arche Kent website.
In addition to the filmed material I kept a fieldwork diary and regular notes on my findings. Analysis of all the material was important for elucidating the findings of this research.
Analysis and feedback
All interviews were transcribed for analysis. The footage filmed by the two core members was particularly important: it provided insight into what each individual views as important, and offers a view of how each sees the world and the community within which they live.
Feedback was an essential part of the research process for this project. Because the filmed research was collaboratively produced, it was important to me that the edited film was screened to the community for feedback before submission. This ensured two things: that the community was comfortable with the information about them being portrayed to others, and that they could identity any gaps that as an outsider I may have missed.
Working with a mixed community of disabled and non-‐disabled people presented a challenge in ensuring that all people were given equal access. This was particularly important for non-‐verbal members of the community. This difficulty was overcome through the amount of time I spent in the company of core members within the community: from the beginning I was assigned the role of companion, in particular to Chris: an 82-‐year-‐old member of Cana House. Spending time with him and seeing how he lived his life became an important part of my research on how home and community are constructed within L’Arche, and how competence is assigned and respected. In addition, one of the core members, Sarah3, who borrowed a camera is essentially non-‐verbal; analysing her footage provided important insights into how she views her home and the community. Because of this her filming became an integral part of the filmed thesis.
The short period of fieldwork limited the depth of research possible, however, the advantages conferred by being a ‘native anthropologist’ helped negate this. Although critiqued by some, native anthropology confers certain beneficial advantages: it can enable rapport to be built quickly and rapid assimilation to a group due to shared understanding of language and underlying rules of the community (Jacobs-‐Huey 2002). It can also encourage greater participation from informants who may feel an ownership of a project in and for their own
3 Because Sarah is so prominent in the filmed thesis, her name has not been changed in the
written thesis when discussing aspects of filming.
community (Kuwayama 2003). With fieldwork of only 10 weeks, rapid understanding and assimilation was necessary for this research: working as a ‘native’ anthropologist went some way towards negating the difficulties inherent in this limited fieldwork time. These limitations were also reduced by making myself useful in the community: at the beginning of my time in Cana I made no attempt at structured research, instead I helped out in the house where extra support was needed due to a shortage of assistants. This, along with the mixture of research methodologies used, meant that not only were people willing to take part in my research, but they somewhat unknowingly did, by allowing me to be part of the community from the beginning.
The fact that the community were happy and in many cases keen to be involved in this research negated many of the limitations of this project, and the continued process of involvement and feedback allowed the community not only to feel involved, but also to direct the research where deemed necessary. This provided ownership to the project from the community itself, and it was this, more than anything else, that enable this project to proceed successfully.
L'Arche seeks to reveal the particular gifts of people with learning
disabilities who belong at the very heart of their communities and who
call others to share their lives. (L’Arche Charter: L’Arche Kent 2011)
L’Arche Kent is an intentional community: a community ‘formed with a specific purpose in mind’ (Love Brown 2001: 3), belonging to the much larger community of L’Arche International. It is constructed on the idea that all people, regardless of ability, issues or problems, are valuable human beings and that the best way of encouraging this recognition is through building relationships with marginalized and excluded people (Vanier 1979; 1992; 1999). This originates from a Christian ethos of acceptance, and ‘walking with the wounded’ (Vanier 1992: 16). Although established and based on Christian roots, L’Arche opens its doors to ‘people of all faiths and none’ (L’Arche UK 2011), and whilst spirituality is still an important principle of the community, this spirituality is now more about acceptance of all people than it is specifically Christian.
Originally conceived at a time when institutionalization of disabled and mentally-‐ill people was losing favour, and care in the community was emerging as a favoured social care setting, L’Arche has grown from one house of three people in 1964, to an international community of over 5,000 people living in 137 communities across 40 countries (L’Arche International 2011). Its founder Jean Vanier remains living in the original community at Trosly-‐Breuil, and although he recently stated that in contemporary society he would be as likely to start a
community for elderly people or the mentally ill (Jean Vanier 2011), the fact that L’Arche currently provides a home for over 5,000 people indicates a continuing need. L’Arche is based on the idea that living in community not only provides a safe and rewarding environment for people with learning disabilities to live -‐ somewhere they can be valued and given dignity as human beings -‐ but also that it is through ‘simple shared lives’ lived ‘in communion’ with vulnerable people that others can grow, express themselves, and live a virtuous life (Vanier 1979; 1992; 1998). These concepts are central to why people come to the community, why people stay, and how people view the homes within which they live.
L’Arche Kent was the first L’Arche community in the UK. It was established in 1974 by Thérèse Vanier, sister of the original founder Jean Vanier. Of the founding members of L’Arche Kent, three (including Thérèse Vanier) remain within the L’Arche community. Consisting of five shared houses (Cana House in Eythorne, Rainbow, Faith House, and The Harbour in Canterbury, and Little Ewell in Barfrestone) two workshops (St Radigunds in Canterbury and the Wellspring in Barfrestone), and three people living in flats (sometimes classified as a sixth house), the community is home to approximately 82 people: 22 core members and 60 assistants. It also counts a further 20 volunteers and friends as part of its larger community. Assistants come from all over the world to live and work in L’Arche Kent: at present there are people from Canada, Estonia, Ethiopia, Germany, Hungary, India, Kenya, Mauritius, Morocco, Nepal, the 22
Philippines, Poland, Romania, South Korea, the UK and the US. Over two-‐thirds of the community are female, more than three-‐quarters are over 30-‐years-‐old, and just under half of the assistants have been in the community for three years or longer. When first established the community consisted of a mixture of core members, assistants who lived and worked in the community, and members who lived in the community but worked elsewhere. However, in present times all members of the community live and work within L’Arche Kent. The community is physically linked via a minibus and carpool service, allowing people to travel between the different projects both for work and recreation. Primarily statutory grant funding in the form of supported living income for core members finances the community, although a small portion of its income (approximately four percent) is from charitable donations.
The houses of L’Arche Kent
The shared houses within L’Arche vary in layout but all essentially follow the same pattern. Individuals within the house have their own private bedroom (with the odd ensuite where necessary), but everything else within the house is shared4. The downstairs of the houses have the kitchen, dining room and at least one lounge (although Rainbow, Cana and Little Ewell have two lounge areas), a small office and at least one accessible fully fitted bathroom. In Cana House four people also have bedrooms on the ground floor. Upstairs are the bedrooms, bathrooms and additional toilets: numbers depend on the house. 4 This was not always the case: in the initial days of L’Arche Kent some assistants and core
members shared rooms. Contemporary care standards and changing expectations do not however allow this today.
Although the ideal of L’Arche is for everyone to live under the same roof, practicalities mean that this is not always possible: although four of the properties are owned exclusively by the community (Rainbow, Little Ewell, The Harbour and St Radigunds workshop), the remaining properties are leased from Sanctuary Housing Association and hold with them the related constraints of leasehold. Cana House for example, has room for eight people within the main building; however, twelve people call Cana home, so four live in a nearby house. Likewise at Faith House. In addition to these standard layouts, Little Ewell has a chapel on the ground floor. This may reflect the history of L’Arche Kent: Little Ewell was the original house for the community when it was more strongly based in its Christian roots. Rainbow too had its own dedicated chapel, however, its use was recently re-‐assigned when changing support needs meant that a member of the house required a downstairs ensuite room. Each house also has a garden, usually no more than a mixture of grass, flowerbeds and vegetable patches. Residents are free to come and go as they please, although those core members with particular support needs will always be accompanied.
As with any household or establishment, each of the houses in L’Arche Kent has daily, weekly and annual routines, which help provide stability and structure to the lives of the people within the community. The following routine is from Cana House where I was based for my research; however, the other houses follow a similar pattern.
During the week ‘Rise and Shine’ occurs at around 7am: one assistant wakes core members and helps them get ready for the day, whilst another prepares breakfast. Breakfast is eaten together and consists of the usual selection of cereals and breakfast foods. At around 9am the community minibus or car arrives to take people to work or drop them off at other houses. In Cana all core members work except Chris, who at 82-‐years-‐old has long since retired. During the day houses are cleaned, gardens tidied, and meetings take place. At around 4pm the minibus returns to drop people back home. A pot of tea is prepared and everyone comes together to talk about their day and look through their record books5. In the evening people relax as they choose or undertake their necessary chores: laundry, tidying and so on. Assistants take turns preparing dinner, often with help from other members of the house (core members and assistants). Dinner is eaten together, usually around 6pm: at the beginning and the end of the meal grace is said. Whilst dinner is being prepared other assistants spend time with those core members requiring high levels of support, whilst others in the house relax as they choose. People go to bed anytime after 9pm, although one assistant stays awake in case of any support needs. The weekend is a relaxed affair with only rough meal times structuring the leisure time.
The daily routine is organised by rota, on which both assistants and core 5 As a residential care home L’Arche Kent has certain statutory obligations that it must undertake.
One of these is the daily recording of activities, moods and general status of each core member. These records are split into four sections: morning, daytime, evening and night. In order to keep core members involved in their own care, L’Arche Kent provides each with a book for these recordings. They help assistants fill in each section, and also show it to other assistants. Reading the books has become an integral part of the daily routine and is an important aspect of competence attribution as will be discussed later in the dissertation.
members are included. The rota is displayed visually in one of the communal areas; photographs are used to illustrate those responsible for each job. This allows non-‐literate members of the community to keep track of who is around in the same way as literate members. In Cana one of the core members, Steven, is responsible for updating the weekly rota; he also keeps a watchful eye on it throughout the week to keep people on track.
In order to keep everyone involved in house and community plans each house has a weekly meeting that everyone attends. This usually occurs one evening after dinner. At this meeting people discuss upcoming plans, issues arising, and the diarised appointments for the next week are shared, keeping everyone updated.
There are also annual events, although these are more flexible than the daily and weekly routines: holiday celebrations, a pilgrimage and summer holidays.
These elements of routine and inclusion help to provide stability and support to all members of the community. They are also an important way that inclusion and competence are supported within L’Arche Kent, as discussed later in this dissertation. Hallrup (2010) argues that although routines within institutional care settings provide structure, they also restrict behaviour and autonomy because of the rules they necessarily entail. This may be true where there are strict boundaries of power between residents and staff as occurs in many care homes. However, in L’Arche all members of the house are involved in setting the routine, and it therefore becomes like the rules and routines of any
household, rather than a strict structure set by one group for others to conform to. In L’Arche Kent having this routine appeared to make people comfortable and feel at home; knowing what to expect at any part of the day gave them the opportunity to relax without worrying about what might happen next6.
The people of L’Arche Kent
People come to L’Arche for many reasons, something that will be discussed later in the dissertation. Some come only for a few months; some have been there since it started in 1974. Some came following recommendations from family or friends, others because they were seeking a different way of living – one where people are valued for who they are rather than what they can do. Some core members come to live in the community on placement by Social Services, others fight to come to live somewhere that they view gives independence in a supportive ‘family-‐like’ environment. There is no set pattern to who comes and who stays (although there are theories – one assistant told me there is a common perception that if you come over the age of 30 years and then stay for more than five years you must be running away from something), however, throughout my time I found similarities amongst many of the long-‐ term members of the community: I was told on several occasions that people felt ‘out of place’ in the wider world and in L’Arche they find a community that accepts people for who they are, accepting differences as part of the norm, and acknowledging the support that every human being is thought to need. This 6 Several of the people in L’Arche Kent are autistic or have anxiety-‐related disorders. For many
people therefore a lack of routine and unexpected occurrences has the potential to cause a great deal of stress and upset, whilst routines provide security and stability.
applies as much to assistants as to core members of the community.
There are many individual stories that gave substance to my research in L’Arche Kent, but which are however, too personal to publish here. However, this introduction to the community should help provide some background for the theoretical discussion that follows in the next chapters.
On home and community
On the outset of this research I aimed to explore how people, both disabled and non-‐disabled came to choose to live in L’Arche, and what this illustrated about the construction of competence within the community. However, it soon became clear that these were the wrong questions: the choices within L’Arche, especially for core members, come not necessarily from choosing to live there in the first place7 but in how they choose to live their lives once in the community. This choice and understanding of home is inextricably bound up in the community of L’Arche Kent and its construction in the wider ‘imagined’ community of L’Arche International.
The idea of ‘home’ is a socially and culturally constructed category, multifaceted and continually reinvented (Lemelle & Kelly 1994), an ‘imagined community’ (Anderson 1991) involving aspiration as well as well as actuality; a source of identity and social acceptance (Rodman & Cooper 1995). L’Arche Kent promotes itself as ‘a body of people – people with and without a learning disability – who choose to belong and create a home together’ (L’Arche Kent 7
Although people coming to L’Arche Kent now are supported to make this decision themselves, many of the core members within the community did not necessarily choose by themselves – some were placed by Social Services when local institutions closed, others had L’Arche chosen for them by their families and guardians, whilst others came there serendipitously. I was told this story about how one of the residents came to L’Arche many years ago: on establishment, the founders of L’Arche Kent went to local institutions to tell them about the community and see if there was anyone who would benefit from moving there. One of the founders, Thérèse Vanier, had previously been in the habit of visiting people in one particular institution, and on arriving there again she was recognized by one of the residents, Charlotte. Charlotte was so excited and happy to see Thérèse that it was decided she should go home with her. And so Charlotte came to L’Arche Kent.
2011). This concept of creating a home together is a central defining characteristic of L’Arche, but home is an elusive idea that is hard to explain for many people, and the extent to which it is achieved varies between individuals. For some people L’Arche Kent is a temporary home; for others it is viewed as a home for life. Home can be the house in which they live, or the wider community of L’Arche as a whole. Some assistants view the community and the individual houses within it as home for the disabled members of the community but not for the assistants, whilst others told me that whilst it is their home, ‘it is home for [core members] first’ (AA: 18-‐04-‐2011). And some people, despite having lived in L’Arche Kent for many years, feel rootless and disconnected, not yet at home:
When I came to the community, after a few weeks I knew that I won’t be coming back to my family home. And like probably after a couple of years I stopped referring to my mum’s home as my home. So, now I would rather refer to myself that either I have a home here or I’m homeless. Because I don’t have a home; this is the only home which I have. (BB: 06-‐07-‐2011)
However, despite these variances, there were many repeated themes that arose in discourse and that I noted when watching people in their construction of home within the community.
A ‘family-‐like’ environment The idea of family life and building a family was one repeated theme:
Home is a place where, well for us it is happened that we found an apartment and get married or buy a house and we have our own children. And we see different parents from one side and the other side. So it is building this family? Yes it is building a family…. when I came here from Poland I didn't know anybody, so I found the family here.... so firstly because I was lonely, by myself, that was I think myself, the family wasn’t here, so they became my family because everyone needs closeness, relationships…. (JJ: 28-‐06-‐ 2011)
This idea was put forward by both core members and assistants, and was given as the reason for some core members coming to live in the community in the first place:
Why did you come to L’Arche Kent?
I wanted to see what it would be like, what a family-‐like atmosphere
would be like and whether it would be best for my future. (CC: 27-‐06-‐
One of the aspects of living within a family is that for the majority it is a protected environment, where people feel free to express themselves without being judged. For people with learning disabilities the family has been a central support unit throughout history and until recently the family was viewed as the ‘natural’ place for someone with learning disabilities to live (Digby 1996). In their research on reaching adulthood, Davies & Jenkins (1993) noted that the family environment was one of the few places that people with learning disabilities are afforded competence, personhood and individual identity.
Ablon (2002) makes a similar observation. Having grown up together, the family can see past the outer markers of difference that many outsiders react to.
The non-‐disabled members of L’Arche Kent are essentially care workers in another form: they are expected to support the disabled members in all aspects of personal care and support needed. However, the family-‐like atmosphere created extends to this care: I was told by many people that the care is the same as you would provide ‘for a family member’ who needed help:
You care for them because you know them, and because they are, you know, a good person with their own individual qualities, and not because they’re your client, or because the government is paying you and you’re sanctioned to do that sort of work. (AA: 18-‐04-‐2011)
During my time at L’Arche Kent there were many occasions when I was reminded of my own family, in particular of the relationships between me and my siblings: that love-‐hate-‐irritation that only someone with whom you have lived for many years and are totally comfortable with can provoke and provide. The core members of Cana House have lived together for many years, and this is obvious in their relationships and the rhythm of the house.
This idea of home and family has been noted in other research on people within care settings, for example in her study of institutional care workers in Sweden, Hallrup (2003: 23) noted that care workers felt connected to the residents ‘as though they were all members of the same family’.
There are positive and negative aspects of creating a ‘family-‐like’ environment. One assistant I interviewed commented on the similarity between the role of assistant and that of parent:
I guess it’s where does responsibility begin and end? Where does it start with the person with disabilities? You have to step in and it’s sort of almost like a parenting thing. (DD: 03-‐07-‐2011)
This effectively extends the view of disabled people as non-‐competent adults, albeit with the best possible intentions. However, for the majority of people within L’Arche Kent, the family-‐like environment extends across the whole community, not only towards core members, providing security in the form of a home and a safe environment in a country often far away from home and all things familiar.
Another aspect of creating ‘home’ that was both reported and observable was the ordinary life that every person within the community takes part in. It is taking part in these everyday activities, usually together with other members of the community that makes people feel like they are at home, and that their home consists of all the members of that house:
For me it’s the little things…I like evenings after supper. When we finish all things, like we finish cleaning, washing up and we can just sit down and rest for a little bit. I like the things like when you are watching some programmes or some sport even, with everybody, like Simone, Margaret, Chris, Steven. And it’s like really nice when Chris is telling something. After that Margaret is responding, Simone, Steven. And no one even agrees! (EE: 06-‐07-‐2011)
Me and Graham used to do a house shop … we’d go around, have a huge long list of stuff to buy and … do the shopping and you’d come out with your bags and load up the car. JJ taught me to buy something nice to have for the car when you finish. And Graham works very hard and he sort of gets a real sweat and stuff and you come out and you sit by the car, you load up the car; it’s all done and we sit there and we have your can of coke or a bottle of coke…. And it was just a really nice moment of silence between the two of us … sort of a brotherly kind of moment (FF: 29-‐06-‐ 2011)
It is these shared activities of everyday life that extend the family-‐like feeling within the community and also allow competence attribution to individuals within the community, something that will be explored in the next chapter.
In his study on Israeli and Japanese immigrants to Canada, Magat (1999: 120) argues that the construction of ‘home’ is ‘the ultimate manifestation of … independence’. However, what constitutes home is difficult to elucidate individually let alone within a group of disparate individuals as often resides in L’Arche. The idea of home is ‘made and remade on an everyday basis … [in the] social realm of security, familiarity, community and … a ‘sense of possibility’ (Jansen & Löfving 2007: 10). It is an ‘ideal’, and Hage (1997: 103) argues that in reality people live within its ‘approximation’. How then do people approach this approximation of ‘home’?
Within L’Arche Kent it was immediately noticeable that people made themselves feel at home by surrounding themselves with identifying
possessions: things that reminded them of who they are, where they come from, what they like, who is important to them:
My first year didn’t feel like home, but when I went back to Morocco and
then I came back, I brought some spices with me. So, I thought, well
that would make the house feel like home. And it did. So, yes: some
cumin, some Moroccan pepper, a teapot, a tagine.
So, those kinds of familiar things that remind you of…? Yes, familiar things, it felt like home. (GG: 06-‐07-‐2011)
This is no different for assistants or core members. For Chris in Cana House, the walls in his room are covered in posters of things he likes: John Wayne; military aircraft; his family. When he showed me his room he picked up and showed me those things that are important to him: a model aircraft by his bed; a beefeater teddy bear; a torch in the shape of an owl. Another core member took me around her room showing me the things of particular importance to her:
What’s really important to me is my photos: my family photos. Like when my sister got married and I was a bridesmaid. My nephews. Me and my sister and me when I was younger and my nephews. My DVDs, my stereo. My cards, my lights. My pictures of my friends. (CC: 27-‐06-‐2011)
However, whilst possessions are an important part of making people feel at home, the community members were a more important aspect for many people. Filming with Sarah and analysis of her filming showed that her home is built of herself and the other people within in it. Initial attempts to get Sarah to show me her room proved futile: after spending some time together I realized
this was because for Sarah her room is primarily a place to sleep and store her things; her preferred aspects of home are the companionship to be found in other people. Part of this is the fact that people feel comfortable to be themselves within the community and accepted where they might not otherwise have been. It was recognised by most people that this is due to the people within the community so these aspects combine to provide a feeling of home. Jackson (1995: 47) too noted this in his explorations of home, writing that ‘home is where you feel free to be yourself without apology or doubt’. Part of this is being able to spend your time at home in whichever way you please. In L’Arche people do exactly this: Chris sometimes spends all day in his pyjamas8, people sit in different rooms because they want to watch different TV programmes, people laze in the sun together, go out to local shops or the pub, and generally spend their time in any way that you would expect of people at home and comfortable. If you compare this to the usual model of supported living, where this level of relaxation rarely happens communally, you start noticing how it is that L’Arche creates home.
Challenges to creating home
The houses within L’Arche Kent are legally classified as ‘Care Homes’. Used in this context the word home has very different connotations than when talking about an individual home. The term ‘Care Home’ often has a negative
8 In fact Chris spending all day in pyjamas has caused issues in the past: on more than one occasion
well-‐meaning neighbours, not realising that he had chosen to stay in pyjamas and that this choice was respected within L’Arche, rang Social Services reporting that core members were being neglected.
association as a place of helplessness, despair and incompetence. The idea of being ‘put in a home’ is filled with dread for many people, and with recent negative publicity about care homes for people with learning disabilities (for example the case of Winterbourne View9) this label holds all sorts of negative connotations. This, along with the statutory requirements attached to being a care home mean that for some assistants it is hard to feel ‘at home’:
It’s a bit challenging to create home in a context where it is a CARE home … to be a care home is a, it sort of has a deeper meaning than might be normally associated, but no: I do find it very challenging to create HOME in a place where, you know, we have to record everything… it’s difficult like, to say ok we’re a family, and it’s home, when it’s so clear that it’s not so strictly that. (AA: 18-‐04-‐2011)
However, L’Arche attempts to overcome this by involving core members as much as possible in their own care, and making the recording and reporting that is part and parcel of running a care home just another part of everyday life, alongside cooking and cleaning.
People in L’Arche Kent come from all over the world, and although many stay for some years, a larger number of assistants come for only a year or two. This provides its own challenges when trying to promote a comfortable home and family-‐like environment; not only is it unsettling to have members of the house
9 Earlier this year a reporter for BBC Panorama spent five weeks filming undercover at
Winterbourne View, a privately run residential care home for people with learning disabilities. As a result of the abuse caught on film (aired as Panorama: Undercover Care: The Abuse Exposed (Chapman 2011), a Government enquiry was launched, and four members of staff from the home were arrested.
changing frequently, but it also produces its own challenges in meeting the expectations of all members of the household:
It makes us a really strange home actually if you look at us in the close up. Because we were like ten or 12 people from… at some point we were like five continents. And trying to bring all these cultures and expectations which you have, how home should look like. It’s just the numbers and juggling it between ourselves and trying to compromise and find the one way, because we had just one table as well. (BB: 06-‐07-‐2011)
Rather than trying to meet the many different expectations, L’Arche instead attempts to mould the expectations of new community members into ones that meet both the community ethos, and also the particular style of each house. Of course this does not always work and although there is a certain level of flexibility within the community to move between different houses and workshops, the expectations of some people are incompatible with the community. These people usually stay for only a short time; despite asking for a one-‐year commitment from assistants, some people find this impossible10.
Home and community
The idea of home and creating a home within L’Arche Kent is intimately woven within the concept of the community of L’Arche: not only in Kent but also as a global organization. For many assistants in L’Arche Kent the choice of home came not from a particular house or location, but from a desire to be part of this particular community. 10 During my time at L’Arche at least three people cut short their stay: one to three months,
one to four and one to six months.
Although small (102 people), L’Arche Kent is spread across the county of Kent, and it is widely regarded to consist not only of those people living and working in the community, but also the large number of people who dip in and out at different times. In addition L’Arche Kent is part of the wider community of L’Arche UK and a member of the federation of L’Arche International, a global community of over 5,000 people (L’Arche International 2011). This global connection is central, not only to the construction of the community itself, but also to the sense of identity and belonging felt by its individual members: it conforms to Anderson’s (1991) definitions of an ‘imagined community’ where shared interest and identity form the community rather than any territorial aspect. In L’Arche, the shared ethos is that of ‘building communities with people with learning disabilities’ (L’Arche UK 2011) where personal relationships within the community are central. One of the founding principles of L’Arche was to provide a ‘place of belonging where people are earthed and find their identity’ (Vanier 1979: 13). Although this was originally conceived specifically for community members with learning disabilities, who, it was felt, were prevented from establishing individual identities due to the de-‐humanising effect of isolation and institutionalization (Vanier 1999), this concept holds true for many members of the community today. A repeated theme that arose in discourses on the community was one of belonging: to the group and to each other. Indeed, whilst attending a gathering of L’Arche UK, a repeated mantra was ‘I belong to you, and you to me’. This was also expressed in many of the interviews I conducted:
I came to L’Arche because I wanted to live in community…. It’s about belonging -‐ the idea of belonging to a group of people. (HH: 05-‐07-‐2011)
It’s not even a matter of space, because I’ve moved like ten times in the community. I think it’s more about belonging and feeling that here are people who are part of your home. I can put my boxes anywhere. (BB: 06-‐ 07-‐2011)
A great deal of time and energy goes into the maintenance of a community identity and connection in L’Arche. There are monthly community gatherings at which readings are given on the importance of community and working together, weekly newsletters, activities organized in the different houses and whenever something special is happening invitations are sent out across the whole community. Gatherings of the communities within L’Arche UK are held every few years, and there are bi-‐annual meetings of L’Arche International. Within each house and at the workshops there is a photo book showing all the members of the community, and these books are easily available and regularly flicked through by people in idle moments. There also exists an international ‘L’Arche Prayer’ (see Appendix one). Written in 1974, this prayer has been adapted for each of the communities of L’Arche, and is recited at most communal gatherings. Anderson (1991) argues that the recitation of poetry, songs and other anthems, including prayers, provide an aspect of ‘unisonance’ to the community, providing ‘occasions for unisonality, for the echoed physical realization of the imagined community’ (ibid.: 145). The ‘L’Arche Prayer’ serves this purpose within L’Arche: reminding people that they are part of an international ecumenical community of welcome.
The notion of community is undoubtedly constructed and reinforced in this case, but it can also argued to be constructing (Magat 1999: 125). Many of the people I spoke to within L’Arche Kent identify very strongly with the concept of L’Arche (where people with learning disabilities live on equal status with people without disabilities in a family-‐like environment) without necessarily identifying it as their home. When a person first comes to live in the community they undergo a three month long induction programme, the main aim of which is to mould the person’s behaviour and ideologies into one that matches those of L’Arche. This, along with the actions mentioned above, serves to reinforce the importance of the community and the necessity to maintain it to those within it. As a result many of the people I spoke to within L’Arche Kent perceive an importance in the maintenance and development of the community, and in the rapid assimilation of outsiders into this:
We don’t have many big things happen. Like normally in life big things are happening around you. Most of the time we have little things. So, this that we make a point to celebrate the little things helps us to build communities. Because we don’t have this natural time which you would have in normal life …. People come and before you get to know them well they are gone. So, all these things which we do somehow helps to make community quicker. (BB: 06-‐07-‐2011)
However, despite these very deliberate and consistent efforts, some assistants within L’Arche Kent feel disconnected, and although they connect to the wider L’Arche ethos, the actualities of creating a community across a whole county is quite different. This was especially true for assistants who had come from other smaller L’Arche communities: 41
Everything is so separated so it’s difficult to all get together. I think that’s just a natural thing that happens when things aren’t close. Where I was -‐ the community I was in [before coming to L’Arche Kent], there was just one house, so, you know we could have an entire community meeting in our living room, and it would be like 13 people, and you know, it’s just very different to… Yea, I think it’s just easier to make something feel like community when there’s so few people and you see each other on a daily basis. (AA: 18-‐04-‐2011)
However, there is a definite connection within the international L’Arche community. People from other communities are viewed to be ‘like ourselves’, as people to be connected to and with whom time can be spent. There is an understanding within the L’Arche Federation that people belong to a large, international ‘family’, and as such, people from one community are welcomed in another: something many people take advantage of on their holidays by staying in other communities:
There is something that if each one of us would like to go and sleep in the other community, we would turn up there. They would do their best to find a place for us. So, there is this sort of security that they – there are people, we somehow belong to the same community. It’s like having relatives all over the world. (BB: 06-‐07-‐2011)
One thing that’s special for me about L’Arche is that it’s kind of a worldwide family really. I helped on a retreat for L’Arche assistants in Europe last week. And I met people who knew people that I’d been with here over 20 years ago.… I met a Polish person who knew a Polish person who I’d known 23 years ago and it was really special … it’s amazing: it’s an incredible family really. (II: 29-‐06-‐2011)
This idea of a world-‐wide family is part of the maintenance of the L’Arche
identity across the globe, and thereby the wider international community. Maintaining this connection serves two purposes: by reminding people that they are part of a larger movement it convinces people of the worth of their endeavour, and therefore encourages them to stay and contribute to the community, and it extends the supportive and protective environment of L’Arche for vulnerable people through enlarging the ‘family’ within which people are better able to cope with their vulnerabilities (Ablon 2002).
The benefits of community
It seems that ultimately people come to L’Arche Kent because they are attracted by the idea of community. A number of people I spoke to referred not to living in ‘the community’ but to living ‘in community’. Omitting the determiner ‘the’ results in a stronger emphasis being placed on the word community, highlighting that the important aspect is not necessarily living in L’Arche Kent, but the fact of living in community at all. This parallels the writings of Jean Vanier, founder of L’Arche, who often writes of living in ‘communion’ rather than ‘community’ (Vanier 1979; 1992; 1999). Communion denotes a profound relationship between two entities: in this case a person with learning disabilities and a person without.
The positive aspects of community living were repeatedly illustrated for me. In particular, community is viewed as somewhere to find protection, comfort, friendship and recognition from other people regardless of whether you are disabled or not. Assistants discussed the advantages of community living in
reference to themselves, but in particular as a safe and protected environment for core members to live in:
I’m getting more from community than I’m giving, and the idea of supported living or living by yourself: totally not resonates with me. Because I could live by myself, but I don’t want to live by myself. It’s lonely to live by yourself. It’s lonely even when you have friends…. So thinking about core members who have usually less social contact than other people because they don’t go out as often, because of their limitations -‐ they don’t have so many opportunities to meet new people: there is such huge risk of being isolated and lonely. (BB: 06-‐07-‐2011)
I think when you are not well and something bad happens being in the community it makes you better much faster than when you are on your own. That is also on my side. But for core members it is better because society is not very accepting of people with disabilities and even though they are not really... I know we are sort of like sheltered from the world but I think in a way they are able to experience this positive relationships in the smaller world… the positive sides are that yes they are accepted. (JJ: 28-‐06-‐2011)
Amongst the core members whom I interviewed the community was described as being a safe environment in which to live, and most people spoke about the friends they had within L’Arche who helped provide this atmosphere. This aspect of recognition, acceptance, and being one large family was notable in my observations at L’Arche: not only within L’Arche Kent, but within the wider L’Arche UK community as well. For one weekend in July there was a gathering of the ten communities that constitute L’Arche UK11. Throughout the weekend
L’Arche UK consists of communities from Brecon, Bognor Regis, Edinburgh, Inverness, Ipswich, Kent, Lambeth, Liverpool, Manchester and Preston.
people wandered between different groups: core members who wandered to a group outside their community were immediately accepted in the new group because they belong to part of the wider ‘family’.
The risks of community
Evidently, the community of L’Arche Kent is a constructed, intentional community of people with similar ideologies and a shared desire to live both ‘in community’ and ‘in community with people with learning disabilities’. However, it exists as a protected bubble within the wider population of Kent, something that now threatens the community. Very few people outside the community know of its existence -‐ even within Social Services and support systems for people with learning disabilities few people are aware of its existence12. This has led to a funding crisis because the community relies almost entirely on Social Service funded living places for core members. This threat is recognized within the community, and was debated throughout my time there. For some this isolation from the wider community is negative due to funding pressures, for others it is positive because it provides a safe environment for core members to live, and until recently the size of the community and connection to the wider L’Arche International community meant that people were not isolated within one small house or group of people. Some assistants focused on the impact on their own social networks, and not withstanding
12 Over the past couple of years several core members have sadly passed away. The
community has found it difficult to fill these spaces due to a lack of knowledge in support services of their existence.
funding issues, this was the major negative point expressed to me by most of the people I interviewed: the danger of being consumed by the community:
A social life can be completely within L’Arche, easily, yeah. It’s also the international system, I mean the fact you’ve got retreats and gatherings … they fit into the nice community where there’s lots of great people there. There’s not a lot of need or ability to go outside the community anyway. And [assistants] will carry the core members with them wherever they go. (FF: 29-‐06-‐2011)
However, the funding crisis caused by this isolation now threatens the fabric of L’Arche Kent: in the last two months one of the workshops has temporarily closed and the minibus service has been reduced. As a result movement is restricted and core members now have to remain at home for five days a week. Although limited activities are offered in the houses, this change threatens to turn L’Arche into a more traditional residential home, where people spend the day confined with little stimulation. This potentially undermines not only the vibrancy of the community, but also the equality and personhood afforded to people with learning disabilities: there is a risk of people becoming inert and disinterested through boredom and inactivity and therefore seemingly less able. It also threatens relations within the house13 and therefore the very ethos of L’Arche: that it is within the personal relationships built in community that happiness, worth and humanity are bestowed and maintained.
Whilst people within each house mostly get along well, being contained within one building with the same people for over 70% of time is bound to cause stresses and feuds. This is especially likely where relationships are already strained and being managed by others around them, as sometimes occurs in any household or community.
It appears that despite its best intentions of providing a community where people with learning disabilities are included and supported as valid human beings, L’Arche Kent has in fact separated itself from the wider community of Kent, and thus unconsciously continued the practice of excluding or secluding people with learning disabilities. Many of the people I spoke to told me of the difficulty in building community relations:
We are quite isolated actually as a community because people don’t want to somehow… We have few friends who are somehow coming to see us, usually ex-‐assistants. But it’s very difficult to build relationships with the neighbours or with people who don’t have some immediate reason to be in touch with us. (BB: 06-‐07-‐2011)
As argued above, this segregation not only has potentially negative impacts for core members, but also for the community as a whole. At such a time of crisis the imagined community of L’Arche becomes integral in the preservation of L’Arche Kent: a community under threat requires a strong belief in its existence in order to keep people within it and working for it (Bauman 2001).
The reasons that people come and remain in the L’Arche community are manifold. For most people, both disabled and non-‐disabled it often centres on the security and companionship offered by living together with other people. For assistants, it may also centre on the concept of living and building communities with people with learning disabilities. It is this shared aim that unites people from around the world, of different religions, ages, sexes and interests, and it is ultimately this that consolidates the central identity within
L’Arche Kent. However, there is something more than just this: people also recognise in this acceptance of people with learning disabilities an acceptance of difference, and L’Arche thereby appeals to some non-‐disabled people who feel like they do not quite fit into the wider society, as a place where they too can find acceptance and recognition for their own worth:
There’s a spirit of welcome in L’Arche, which applies not just with people with learning disabilities but to the assistants as well, so each person can find their place here, can feel valued. Each person has something to give and something to receive. We all learn from one another. We’re all different and yet somehow we form one body where each part of the body is important, and, as I say, there’s something to give and something to receive from the others. (II: 29-‐06-‐2011)
It is in this spirit of acceptance and identity consolidation that competence is created and attributed, and where equality resides within the community, as will be examined in the next chapter.
On competence, equality and normality
In the UK, full adult human status and the rights attached to these (such as voting, control of bank accounts, owning property) is attributed according to competence, measured on intellectual capacity, along with the ability to learn social rules and norms (Jenkins 1993). Given that someone with learning disabilities is defined as having ‘a state of arrested or incomplete development of mind… significant impairment of intellectual functioning [and] significant impairment of adaptive/social functioning’ (WHO 2001) it is plain to see that they will struggle to fulfil these expectations.
Developing from the theory of ‘normalisation’ in the 1980s, there exists an advocacy that people with learning disabilities deserve the same rights as ‘normal’ people. This involves the rights to make decisions about their own lives, and to be offered the opportunities other people within the community receive (Emerson 1992), something which includes the choice over where and how to live their lives.
However, the concept of equality derives from concepts and standards of ‘normality’, based on forensic and popular definitions of milestone achievement, where normality describes the ‘average’ or ‘typical’ person (Moser 2006). In this scenario, people with learning disabilities ‘are neither average nor normal’ (Jenkins 1993: 17). This idea of abnormality still pervades much of the UK (Abberley 1994), and leads to the conception of people with
learning disabilities as intellectually and socially incapable; incompetent and therefore unable to live complete lives. As a result, despite an ethos of ‘independent living’, many people with learning disabilities remain living at home, or live in supported housing with paid personnel to provide both care and friendship (Clear & Horsfall 1997: 129).
This has many effects. People with learning disabilities remain isolated from much of mainstream society, and people within mainstream society often regard people with learning disabilities as ‘eternal children’ (Hollowitz 2008: 92), with a widespread belief that most are not able to make competent decisions, and their opinions are not therefore valid (Jenkins 1993). This is something that was noted by many of the assistants within L’Arche: I was told that encounters with people from outside the community are often infuriating because of this, and it could be argued that this is one of the reasons that L’Arche keeps itself enclosed: to protect its members (both disabled and non-‐ disabled) from these negative encounters:
You notice when you are going out into the community with people, like for example going to a doctor’s appointment, they don’t – doctor’s don’t speak to the person with the disability, they speak around them, and in a way that even if they wanted to understand they couldn’t …. People are looked at as, I mean, they’re certainly welcomed and accepted, but they’re not still, there’s still that idea of …, more like children you know. Like, they’re welcome but we need to make sure that they’re behaving. (AA: 18-‐04-‐2011)
The description and treatment of people with learning disabilities as innocent and child-‐like has been recorded as far back as the seventeenth century in Britain. In his examination of social welfare provision for people with learning disabilities, Andrews (1996: 70) notes that the 1701 Bishopsgate parish records describe an adult with learning disabilities as ‘childish’, whilst Rushton (1996: 53) shows how the description as ‘innocent’ was used in Poor Law applications as a means of gaining relief payments for poverty stricken families14. This idea of a prolonged childhood ‘innocence’ has perpetuated to date, and it could be reduced to a capitalist argument where to be a valid and valued member of society, one should contribute productively in society. Those not engaging in productive activities are viewed either as ‘non-‐persons’ and therefore not worth consideration (Cahill & Eggleton 1995) or as a burden on the rest of society unless there is a valid reason for their lack of production. In the case of people with learning disabilities the explanation comes down to their purported intellectual and social immaturity. It is still common to hear someone’s disability being described in comparison to children: ‘he/she has a mental age of a 4-‐year-‐old’ for example. This continued discourse within professional circles reinforces and perpetuates the myth of the ‘eternal child’, which does nothing to improve integration.
14 Modern day social welfare systems in the UK have their roots in English legislation first
passed during the reign of Elizabeth I. Based in earlier legislation such as the Vagabonds and Beggars Act of 1495, the first ‘Poor Law’ was passed in 1536 (Slack 1995). The initial law gave the ‘impotent poor’ (those too infirm through age, sickness, or disability to work) license to beg, but this was followed in 1597 by the Act for the Relief of the Poor and the 1601 Elizabethan Poor Law which provided a system of relief in the form of food or money for these ‘impotent poor’ (ibid.). The relief was administered locally and depended on the assessment by jury of individual petitions and although petitions based on learning disability were rare, they did exist (Rushton 1996).
Ablon (2002) has noted that one of the few places within which disabled people avoid stigmatization is the family unit. With L’Arche shaping itself on this family unit, people with learning disabilities achieve recognition that they might not elsewhere. It could be argued that it is the everyday living experiences that enable people a deeper understanding of one another, and this was a repeated theory provided in L’Arche: that it is living together and undergoing everyday tasks that enables recognition of individual competence and adult status to all members of the community. Although some people have roles as assistants and some as core members, observation showed, and interviews confirmed, that everybody has a role within the community, albeit a role that fits their abilities:
Everyone kind of has their own specific role, like Margaret will often set the table and do the drying the dishes, and she likes to do the laundry. Simone will just sort of -‐ it depends on her mood -‐ will do all kinds of different things: she loves cooking and she often will help prepare desserts and things. Steven has various specific jobs that he does, and it’s important for him that he does. Like, we have the board: Steven sets that up every week. Every Sunday after dinner he puts all the faces on -‐ he gets that all sorted and he also takes out all the garbage, and so he’s got a lot of jobs. Everybody does, sort of what they want and what they can, but the idea is not to be like: ‘some of us are here to be served and some of us are here to serve’. It’s that we all try to live and as much as we can we do what we need to run a house and live together…. (AA: 18-‐ 04-‐2011)
In contrast to many other supported living arrangements, people in L’Arche Kent live and work within the same community, and it is this that was repeatedly suggested as the feature allowing core members to be recognised for who they are, rather than merely as someone with disabilities. This was something I found within myself from being in L’Arche: I initially overcompensated on my support of people, but soon learned that even the most seemingly disabled person was capable of some input, and they are expected to take part. It is here that adult status appears: not only in the recognition of a person as an individual valid human being, but also in the expectation of their participation in the community:
In some normal institutes maybe they are again differences between staff and core members. Sometime people not eating together, makes a difference. Stops to be everybody equal, the same. Do you think that eating together is an important part? Yes, I think all things that we do together in terms of living together. When you don’t eat together it creates this prison-‐like environment. You have people who eat and people who inspect the other ones eating. At home you eat together. (BB: 06-‐07-‐2011)
What is normality?
Beginning in the 1970s in Scandinavia, Normalisation Theory became increasingly popular in the UK, and was particularly influential in social policy formation in the 1980s. It argued that disabled people should be encouraged and supported to live ‘normal’ lives. Although aimed at enabling society to
adjust and support people of differing needs, and advocating for inclusion and integration of disabled people, some have argued that the wider effect of normalisation is to advocate for ‘normal’ behaviour and therefore to make adjustments to people deemed ‘abnormal’ (Campbell 2009; Connor et al. 2011). Although it is common in everyday discourse to hear the sentences ‘what is normal?’ or ‘who wants to be normal?’ there exists an expectation within society: of appearance, ability and appropriate behaviour, that leaves people outside this range labelled ‘abnormal’ and thereby subconsciously (and sometimes consciously) discredited and distrusted by many of those who interact with them (Goffman 1963). In L’Arche however, there is an advocacy and internalisation of the idea that everyone is different, and that instead of trying to mould people’s behaviour to one that is ‘acceptable’, provided people participate in some way in the community, differences should be accepted and acknowledged. For some people participation merely extends to eating meals as a group; for others it entails undertaking housework or helping organise community events. But through all this there remains a conscious discourse that normality does not exist and that difference is acceptable:
I find it so ... relieving is not the word… I think it’s very freeing in a way, living in a community where no-‐one is normal. Because very often when you’re in a community gathering you cannot recognise who is core member and who is assistant. And this to me is more normal than this what we are trying to achieve in the mainstream society when we are all theoretically ‘normal’ and inside there is madness going on in everyone. (BB: 06-‐07-‐2011)
This discourse on normality is emphasised through everyday encounters, and through the shared ethos and teachings of L’Arche, where it is recognised that every person has something to give to the community (Vanier 1979; 1999). In addition, there exists a notion that the idea of normality is threatening, because it will lead to exclusions:
The issue of normality is quite a dangerous subject really because if you look at history, if you look back and you see what happened… so who’s there to determine what normality is? I mean obviously there are differences in intelligence or in capacity, but if one sense is norm then the people who don’t fit into that category are going to get isolated by society. What effect does that have? It has the effect that people who don’t fit into this category won’t be able to lead fulfilling lives because they’re being discriminated against…. (HH: 05-‐07-‐2011)
These exclusions are not necessarily aimed solely at the core members of L’Arche. Many of the assistants within L’Arche came because they themselves felt out of place in the wider world. Community and support exists where people recognise shared aims and interests: in the case of L’Arche it could be argued that this shared interest is not only in living with people with learning disabilities, but also in living in a place where no-‐one is judged:
Some of the assistants we have, do come, they themselves are vulnerable or do have problems, do have relationship problems and they come into us because they think that in this community they might sort themselves out, and lots of them do. (FF: 29-‐06-‐2011)
In addition, L’Arche fosters a model of interdependence amongst the community: on each other and on the community itself. Assistants within L’Arche Kent consistently emphasised the fact that not only are core members reliant on help from others, but that they themselves need and appreciate support from others, albeit in different ways:
CARE to me is like such a big word, you know there’s like a lot of care that goes on that say, the Social Services and such wouldn’t be aware of, like Simone for example – her and I are really close and she provides care for me that would never be recognised you know in a, in a professional kind of a sense …
Can you elaborate on that?
Like she kind of does the same for me that I would do for John or whatever: she’ll bring me a cup of tea and she’ll, like she’s always just kind of thinking about what I might need…. She provides it in a way that only Simone would – she sees my shoes somewhere and, you know – I meant to leave them there, but she’ll say ‘Oh those are [my] shoes’ and she’ll pick them up and come and find them, and bring them to me because she sees that I’m without my shoes. You know, she’s just, very aware; looks after me more than anyone in my life ever has ever. (AA: 18-‐ 04-‐2011)
This fostering of mutual dependence has two main effects: it prevents people from viewing disabled people as needy and therefore lesser human-‐beings (because everyone needs help), and it keeps people reliant on the community as being the place where these needs, support, and interdependence are recognised and met. In a community that relies on good will of assistants to 56
stay15, fostering this shared identity and need plays a vital role in the maintenance of the community, especially in the face of social pressure towards independent and away from group living. This also links to the way in which identity is constructed and reformed through and within the community, both consciously by the community and individually through contact and interaction with other people and by fostering a shared identity within which people can access and provide support (Rapp et al. 2001). In addition, it provides a persuasive means of community maintenance at a time of crisis (as discussed in the previous chapter), a time at which an absolute belief in the community becomes necessary to prevent disintegration (Bauman 2001).
Can there be equality?
However, a contradiction exists in some people’s discourses on equality. Despite a concerted effort of the community to accept and appreciate the differences between people, a subconscious inequality remains between many of the disabled and the non-‐disabled members of the community which is notable in the language used by some assistants to talk about core members. In one interview an assistant commented that a core member was ‘like a normal person’ and then expounded that ‘maybe it’s wrong that I want to see her like a normal person’. In another, an assistant spoke about ‘parenting’ core members. However, these kinds of statements usually came from people whom had only been in the community for a relatively brief amount of time: in
15 Assistants come as volunteers to L’Arche Kent: they receive boarding and food for free and a
monthly allowance of £200.
the case of long-‐term assistants within the community (over five years) the language was much more inclusive and little or no distinction was made unless I asked specific questions:
Either people treat us without respect and without giving us enough attention or people treat us with pity and like going over the top where you think well, I’m actually normal. This is how I am. It’s like you don’t need to make so much fuss about it. (BB: 06-‐07-‐2011: emphasis added)
This reflects part of the teachings of L’Arche: that there should be no distinction in status between different members of the community (Vanier 1979; 1992). Of course this is difficult to achieve in a care environment with legislative reporting obligations, but as far as possible this lack of distinction is encouraged and maintained. Another aspect of this is in the inclusion of core members in the everyday management of their care and the statutory requirements related to this. In every house there is a photo-‐rota that informs both assistants and core members who is responsible for each of the weekly tasks. This includes core members. A further example is in the daily recording in books. It is a statutory requirement that each residential care home keeps a record of daily activities, issues arising and so forth. In most supported living arrangements this recording is carried out by staff and kept in files that residents never see and do not have access to. In L’Arche however, this has been integrated into part of the daily routine of people’s lives, and into something that core members appreciate and enjoy. Each core member has their own book in which these things are recorded, and they participate in filling in the records. Most core members are proud of the book: at different 58
parts of the day people will show others their book and many like to have it read and appreciated. It is these small elements of inclusion that help implement competence of people with learning disabilities in L’Arche: including people in their own care is a basic aspect of independence that has long been denied in supported housing.
The extension and construction of competence within the community is fostered between core members, assistants, between assistants and management, and between core members and assistants. Whilst layers of management exist, L’Arche attempts to run a non-‐hierarchical structure. This is maintained through the continued and repeated discourse that every person within the community has their role, and whether that role is one of managing the finances or of simply being a member of one household, it is viewed as equally valid. However, despite these measures many assistants believe there is not true equality, either between themselves and management, but more importantly, between core members and assistants:
Just the daily living with people and working alongside people, sharing normal life, ordinary life… gives more of a sense of equality. I don’t think people are equal but much closer to being equal than they would be elsewhere. (KK: 29-‐06-‐2011)
Do any of us have total choice? I know I don’t.… But I think what’s more important is that people are given the opportunity to express what they want and then they’re helped to get that within what means are available.… I mean I guess there’s never total equality perhaps but it really tries. (DD: 03-‐07-‐2011)
However, people repeatedly told me that the community tries its hardest, and I observed much behaviour attempting to deconstruct these hierarchies, for example, meals are eaten together by large numbers of the community however, should someone need some distance, be they assistant or core member, that wish is respected and people are given space. In spare time I observed behaviours that you would see in almost any home: assistants and core members hanging out in pyjamas; sleeping in the sun; smoking together. And this is where the real movement towards equality occurs within L’Arche: these shared behaviours are those of people who feel comfortable and companionable together, not those of professionally controlled client-‐carer relationships. Unlike many supported living arrangements, L’Arche fosters friendships between people, and in particular between core members and assistants. Whilst there necessarily exist responsibilities for assistants within the community, including a duty of care towards the disabled members of the community, there also exists an ethos that professional boundaries of client-‐ carer must be crossed and broken down to provide an inclusive and accepting environment for people with learning disabilities:
In a lot of ways we aren’t, you know, anything special or different than a lot of places doing the same things, but one thing that sort of sets us apart is that we are Facebook friends with core members and we drink beer with them. It’s like these two things that, that sort of pinpoints how the relationships can be a bit different, because in normal supported living it should be more professional, and you shouldn’t, sort of cross these lines, but in L’Arche we kind of have to. It’s good to do. (AA: 18-‐04-‐ 2011)
This reflects the reality of relationships in most cases of inter-‐personal care and support: supporting someone in such an intimate way produces complex interactions of personality and identity of both the carer and the cared for (Fritsch 2010). L’Arche differs from other organisations in recognising this boundary crossing. This in turn enables people living within the community to feel more comfortable with one another and helps enable the ‘family-‐like’ environment for which L’Arche strives. And it is within this family-‐like environment, where people share their everyday lives with one another, that individual identity, ability and competence can be realised for people with learning disabilities. This in turn is only possible because people choose to live within this community.
Throughout my time at L’Arche Kent people repeatedly commented that I must find their lives incredibly boring. Quite the opposite. As Klevan (2000) notes, it was through the observation of everyday life and its seemingly unimportant moments that I began to notice the ways in which L’Arche allows people to be people regardless of ability and difference. There are of course issues within the community; not least it’s self-‐seclusion within the wider population, something that could potentially threaten its very existence. But what I saw and heard throughout my time there was filled with hope: that people with learning disabilities can find a home where they will be accepted for exactly who they are, and that this could spread. The current UK government favours ‘independent living’ for people with learning disabilities. From my own experience of supported housing I know that in many cases this consists of a scheme where staff members sit in an office whilst disabled people stay in their rooms, and neither party is encouraged to mix with the other beyond professional duty or personal need, something that has been noted in other research on care settings (Antonsson et al. 2008; Hallrup 2010). L’Arche Kent runs a very different model to this. Sadly it is not a model that is favoured by much of Social Services: the houses are viewed by some as ‘institution-‐like’ and a ‘family-‐like’ environment is not encouraged. As L’Arche’s founder notes:
To walk with the [vulnerable] is to go against the current of society. To
work for them -‐ even to fight for their rights and to raise them into the
normality of society -‐ can be part of a culture. But simply to live with
them, to share their lives or to create community with them is not!
(Jean Vanier 2011)
People with learning disabilities are still widely viewed in the UK as ‘less-‐than’ people: as incapable; as people who need pitying and looking after, or, if living in the same way as non-‐disabled people, as people to be admired for their special efforts (Shwartz et al. 2010). Examining how people living in L’Arche Kent construct their home and community, this research examined discourses on these wider concepts of humanness, personhood and the value and competence attributed to people with learning disabilities. Further participatory research is needed involving people with learning disabilities: it is only through this inclusion that we can enable ‘another other’ (Kudlick 2003) and stop viewing people with learning disabilities as largely incompetent.
The community of L’Arche Kent constructs itself on the idea of home: of building a shared home for people of different abilities and interests from around the world: a home where everyone’s needs are supported and everyone within it is valued. This is only possible because of the community ethos of living and sharing lives together. Spending time in the community allowed me to start exploring how both disabled and non-‐disabled people live their lives within L’Arche Kent. Using collaborative filming I was able not only to explore these issues myself, but to include the community within the research, and in
particular to enable equal access to disabled and non-‐disabled and to verbal and non-‐verbal members of the community.
L’Arche Kent enables an environment where people with learning disabilities are not only free to be themselves, but where their differences to others are acknowledged and accepted. In acknowledging that people are different, L’Arche not only enables personhood and competence to be attributed to be people with learning disabilities, but it also offers a place for non-‐disabled people who find it difficult to fit in elsewhere in society. It is one of the primary teachings of L’Arche that community is not about forcing people to conform, but about uniting people with a common interest (Vanier 1979: 43). In L’Arche there are two primary shared interests: the concept of living in a community of welcome, and the idea of building communities with people with learning disabilities. It is by constructing and maintaining a community where difference is accepted and appreciated that L’Arche Kent is able to support people with and without disabilities to become integral parts of that community, and it is through this participation that people are recognized as competent adults, capable not only of making choices and decisions, but also of directing their lives and the relationships within it.
It is often assumed by people outside care communities that people working within them must be doing so because it is ‘rewarding’ and because they ‘want to help people’. Whilst working in supported housing I remember getting repeatedly irritated by people who’s response when finding out my job was ‘good for you!’ Statements like these are incredibly revealing about others’ 64
attitudes towards different groups of people, and it was this subconscious discrimination that irked me so much. Undoubtedly some assistants within L’Arche come there to help people. However, many more come because they are attracted to living in community and some for entirely different reasons. Within the community of L’Arche people recognise something of themselves within others and it is this recognition of shared interests, aims and personalities that keeps people in the community. However, despite a discourse of equality within L’Arche Kent, there remain distinctions between core members and assistants. Of course there always must: assistants have a statutory duty of care towards core members that core members do not have towards them. Nevertheless, most assistants within L’Arche Kent try their hardest to produce an environment in which people with learning disabilities are not only safe and healthy, but are also valued individual members of the community. And as one assistant said to me:
So long as someone’s trying, … what else can you do?
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The L’Arche Prayer
Father, through Jesus our Lord and our brother, we ask you to bless us. Grant that L'Arche be a true home, where everyone may find life, where those of us who suffer may find hope. Keep in your loving care all those who come. Spirit of God, give us greatness of heart that we may welcome all those you send. Make us compassionate that we may heal and bring peace. Help us to see, to serve and to love. O Lord, through the hands of each other, bless us; through the eyes of each other, smile on us. O Lord, grant freedom, fellowship and unity to all your people and welcome everyone into your kingdom. Amen.