P. J. Cushing  2003

 

 

 

 

 

 

 

6.0 The Enculturation Process of a Local, Moral World

 

 

 

6.1 Introduction

 

 

L’Arche has created a local, moral world in its communities[i]; a provocative cultural space for imagining and practicing an enriched way of living with the kind of personal and group differences that are usually devalued in mainstream, Western society. Within this cultural system, L’Arche seeks to expand the scope and principles of caregiving by producing elements of care that are not normally included in a caregiving agency's mandate. In this chapter, I elaborate on several enabling factors that L’Arche has developed in order to achieve those elements or outcomes. I discuss the constructive effect of these factors, but also their unintended and sometimes harmful side-effects.

The L’Arche objectives for creating such a system are described in Chapter 4. Here, based on my analysis of their mission statements, observations and interviews with informants, I identify three important outcomes that must be generated in order for L’Arche communities to reach their goals. These outcomes are: core-member well-being, the creation of mutual relationships across difference, and transformed caregiver subjectivity. These outcomes are intertwined and mutually enabling.

The first outcome is the well-being of the people with intellectual disabilities who come to live in the L’Arche homes and communities. Well-being need not mean that every person in L’Arche is entirely content. Like anyone else, people with intellectual disabilities have ongoing concerns and projects related to their home life, relationships, work and general emotional state that require support and effort. Well-being refers to, but is not limited to, legislated elements of care such as housing and feeding people and providing basic skills training (L’Arche 1993; Rioux 1994). L’Arche aims to create a safe place for people with intellectual disabilities to live and work where they can learn to feel that they are accepted for who they are as whole persons, and with, not “in spite of,” their disabilities. Once they gain a greater degree of confidence and self-acceptance, they are then supported to grow and move outwards into wider social networks in their workplace and in the regular community. Although this goal is fundamental to the mandate and governmental rationale for the existence and funding of L’Arche, I do not evaluate it directly in this thesis[ii].

The second outcome L’Arche requires is healthy mutual relationships across difference. The model of care applied within L’Arche communities involves people sharing home life together and reducing the social distance that has become the norm in caregiver/patient relationships. Since most people with intellectual disabilities in L’Arche and elsewhere will always require some form of paid-care relationships, L’Arche asserts that effort is needed to ensure that they do not experience themselves as dependent, devalued or inferior in these relations. Having mutual relationships requires recognition, especially by the more powerful person (i.e., assistants), that the caring and benefits flow both ways. When assistants acknowledge what they receive, they contribute in a small way to changing the negative conditions under which all people with disabilities live. I illustrate the nature of these mutual relationships in Chapter 7.

The third outcome, transformed caregiver subjectivity, encompasses the professional role of the caregiver, and their sense of self as a person within and outside of the L’Arche homes. Coming to terms with both the community aspects of living and working in L’Arche, and the new experience of being with people with intellectual disabilities can be likened to culture-shock for many new assistants. The stigmas that surround people with intellectual disabilities mean that most adults feel uncomfortable around them (Murphy 1990:86). Being able to be touched by, or learn from them then, does not come naturally for most people[iii]. Assistants need inspiration, role models, and supports to move from a simply compassionate and subjective position to a subjectivity with the emotional, moral, psychological, spiritual and technical skills required to turn the compassion into an active, living practice. An extended period of adjustment and learning or enculturation is thus needed.

Given that the realization of the first two outcomes requires a certain type of participation on behalf of the assistants, the processes involved in their enculturation into L’Arche are extremely important. The subject of this chapter is that enculturation process. I identify and describe two important tactics (spatio-temporal organization and storytelling) and three key strategies (redefining productivity as fecundity, revalorizing difference and providing care for the caregivers) that L’Arche uses to enculturate assistants in their approach to caregiving, and through which assistants negotiate everyday interactions, tasks, and relationships in L’Arche.

6.2 Tactics that support the enculturation strategies

 

In this section, I examine two tactics—spatio-temporal organization and storytelling—that L’Arche employs to achieve its strategies and goals, including the enculturation of new caregivers. Tactics are “manoeuvres used, or plans followed, to achieve a particular aim or task” (Sinclair 1994:1569). In other words, tactics are not important as ends in themselves, but rather for how they serve other strategic ends, in service of the organizational goals. Tactics are as vital to accomplishing aims as any other part of the plan even though they operate at the micro-level. Though they are not theoretically complex, without them, a plan or goal would remain unfulfilled. The first tactic, spatio-temporal layout, includes how space and time are arranged within the homes and the communities, and how activities and projects are prioritized. By sketching out a typical “day in the life” of assistants, I show how spatio-temporal factors are often intentionally used to influence how experience is constructed for them.

The second tactic used at L’Arche is storytelling. Transforming one’s caregiving and relational experiences into narratives, is a vital didactic mechanism for enculturation into the local moral norms and caregiving approach within L’Arche (Cushing 2002). Although storytelling is a widespread practice at L’Arche, in my observation its power is undervalued and has been given little critical consideration at an organizational level. As such, it is a prospective area for analysis regarding both its challenges and its potential to improve training and L’Arche’s effort to relay its message more broadly.

6.2.1 Spatio-temporal layout

 

Shared space and decisions

 

Cooper (1994:110) has argued that the design of buildings can partially “structure the parameters of people’s daily lives.” There is an ongoing dynamic between built structures, spatial discourses, and people’s experience of them which feeds back into changes in the meaning and uses of built space (Cooper 1994:93, 110). Vanier intuited that the space one inhabits can both reflect beliefs and affect one’s sense of well-being within it. This intuition led him to invite Raphael and Philippe to move from the institution into his home; it is also reflected in his belief that living together, in the same conditions, is necessary for caregivers to develop genuine solidarity and relationships with core members. The moment when Vanier and the men moved in together was “when a meaning was given concrete form in space.” (Cooper 1994:94).

New meanings can be produced in the ongoing dynamic between spatial discourses, built structures, and people’s experience of them (Cooper 1994:93, 110). Sharing living space changed how Vanier perceived the core members, and bore fruit in his evolving notions of mutuality, but has also influenced more recent decisions about spatio-temporal layout in L’Arche. Core members are now asked for greater involvement in planning and decisions, even where that adds substantially to the length and complexity of the process. One Canadian home that needed a new, fully accessible bathroom for people with diverse impairments, held extra meetings involving the core members in discussions and demonstrations (of options) with the architect, plumbers, physiotherapists and technicians. This kind of engagement is progressive (Rodman and Cooper 1989), and is an example of a shift in assistants’ sharing of power by conceiving of the home as a space to be shaped by each person in it.

            These same principles continue to be applied today, where assistants live full-time in the homes, at least for the first three years that they are involved with L’Arche, and often for much longer. Assistant and core member rooms alternate throughout the homes and are similar in size, furniture and access to amenities like bathrooms, which are shared. It is difficult to emphasize how significant this single design variable is in realizing the L’Arche ideology and lending a feeling of personal “authenticity”[iv] to the assistants’ project of living and working in a way that “makes a difference.” This is a classic example of how “places [can] produce meaning and that meanings can be grounded in place” (Rodman 1992:643).

Most homes in a L’Arche community are typical of urban or suburban houses. One spatial design principle that developed, once L’Arche was in operation, was that each home should contain an eating area that is large enough for everyone to eat together, and a comfortable, welcoming, common living room area, large enough to hold house members and friends. The belief is that the physical space would facilitate (by virtue of existing) occasions for coming together to share stories about the day and celebrating life’s milestones. This is a spatial design principle that was noted by outsiders as unique and effective when it was introduced (Wolfensberger 1973).

Symbolism in décor and scheduling

            There is not enough space here to outline all of the ways in which L’Arche designs their space and time/schedules to reflect their ideology. Instead, I name some salient ones to evoke a sense of how life in L’Arche feels and looks quite different from mainstream group homes and institutions. Candles on the kitchen table and in the common space are often cited as an essential element of a L’Arche home. When I arrived for a visit in Hull, Quebec, I gave them a large, autumn-scented candle, and a long-term assistant at the table smiled and said, “Ah tu comprends déja L’Arche!” In common areas, candles are often simply set on a table, or they are included in a small altar, around which people sometimes gather to share quiet time, stories or prayer after dinner and on special occasions. The candles are incorporated into many rituals and the lighting and snuffing of the candles provides a ritual beginning and end to dinner.

Candles are also utilised in private spaces, reproducing the group emphasis on reflection and ritual. Many assistants and core members have candles and some also have personal prayer spaces in their rooms. When lit, the candles suggest a slowing down, a quieting of the mind, and a turn to reflection on the travails and gifts of the day, however small. In this sense, spatial and temporal principles overlap, as the candles also symbolize a change from the time of day when everyone is involved with their own activities, to a time when they are open to being more connected with the group, be it in sharing food, stories, prayer or laughter.

            Temporal principles are perhaps best illustrated by a few aspects of scheduling and time priorities in a typical day for an assistant. Most assistants live in the homes, although across Canada an average of 23% eventually live out, some of whom have spouses and children (Lukeman 2001). The scheduling of a typical day for a live-in house assistant is perhaps the best illustration of how L’Arche ideology is reflected in the temporal principles of L’Arche homes. The assistant typically wakes early in order to get house tasks and routines underway before helping core members to get ready for their days. The assistants in Ontario’s Green House begin with the laundry and then undertake various kitchen-based tasks, such as getting out the breakfast foods, brewing fresh coffee, and packing lunches for core members to take to work. In other homes, such as Unity House in British Columbia, the core members do most of these tasks for themselves and are simply guided by the assistants.

The efforts made to have core members participate in as many of the daily operations of the house as possible, can be used to illustrate how temporal priorities are used to enact the L’Arche ideology in the homes. Although assistants aim to facilitate core members’ inclusion in household chores in order to maximize their sense of independence and control, it often requires more of an assistant’s time and energy to support a core member to do a chore than to do it himself. This is an issue of skills, but also of core members’ desire; over time, many core members seem to have either gotten bored or decided that laundry is not really a meaningful task and would prefer that an assistant does it while they, themselves, do something more interesting.

As a result, many of the household chores are sites of ongoing negotiation of rights and responsibilities between core members and assistants. There are at least four intersecting and conflicting interests at play here: the organizational goal of supporting people with intellectual disabilities to grow in skills and minimize dependence on others; the well-being of the people with intellectual disabilities, which includes where possible their desires (e.g., not to do chores); the assistants’ well-being, including the chance to do more than housework (e.g., to support others to learn the skills, have time to plan outings, etc.); and the reality that negotiations and supportive training are necessarily bounded by the limited time and number of assistants available to undertake these tasks.

In my observation, such complex situations were always resolved through some micro-negotiation of the particular priorities at hand between the assistant and core member, and often consultation with other assistants as well. For example, in my house, watering the plants was Donna’s (a core member) responsibility and she liked it. It took her a long time and she needed an assistant to be with her. When we had enough assistants in the home for other vital tasks like making dinner, we would support Donna through this chore. If we did not have the time or people to support her in a way that did not rush her and make her agitated, then one of us would water the plants. An assistant must constantly make micro-decisions like this. They must develop a facility to quickly weigh the competing claims of multiple ideals within the parameters of ethical practice and resource realities. The second tactic, storytelling, helps assistants learn to navigate this moral domain (see section 6.2.2).

Dynamics of personal hygiene routines

            Waking people and providing help with personal hygiene routines and dressing are other key aspects of life in a L’Arche home. A few core members need only minimal help with this. Many need to be supported through the whole process in the morning and again at night. Routines are often occasions where the organization’s values are reflected in temporal structures. In formal training and, ideally, in the role models provided by long-term assistants in the home, the message is that routines are not merely a task. Rather, routines are an opportunity for a profoundly respectful human interaction with the person who is being cared for, and a time for assistants to recognize how difficult it must be for core members to experience such vulnerability in the bath every day, with different caregivers over time.

            The assistants are encouraged not to rush people through their routines like an assembly line, but rather to try to be sensitive to how the core member is feeling and to make it as comfortable for them as possible. If the core member’s ride to work is waiting or some other issue emerges, expediency will prevail. In my observations, however, the idea of routines as requiring and deserving extra time, is commonly respected. Indeed in interviews and informal conversations with assistants, particular stories about this are frequent, as I illustrate in the next section on storytelling.

            The intimacy of routines, again, tends to create many delicate situations and conflicts between the parties involved. For example, for those core members who are not “morning people,” their desire to stay in bed is often a source of stormy confrontations with assistants who are responsible for supporting them to make it to the bus and to work on time. In so doing, the assistants help the core members learn to balance their responsibilities and their desires. Once again, I observed many multi-factored scenarios that required that the assistant and core member negotiate the terms and parameters of acceptable choices.

            Sometimes the daily squabbles and mini-power struggles are not connected to health issues or more significant concerns. In these cases, assistants support each other by sharing tactics that help make the process less quarrelsome. For example, Henry likes to curse at the assistant who is with him, as he sometimes feels that it is the assistant’s fault that he must get up. To diffuse the tension, prevent the escalation of the behaviour, and to give Henry, who has a good sense of humour, something else to focus on, the assistants and Henry now commonly accentuate the humour in the predictability and frequency of the scenario. For example, if Henry calls the male assistant a name, he might joke that Henry was being too easy on him; “Is that the best that you can come up with this morning? Boy! Guess you did not sleep too well!”

In cases where this reluctance or refusal is out of the ordinary for a core member, the behaviour is taken more seriously as it might signal that something else is possibly bothering the person, such as a health or emotional issue. Such unexpected behaviours are especially helpful in flagging concerns for people who do not use words to express themselves. One such refusal led the team to realize that a man had a toothache that he could not articulate, and another revealed a core member’s distress over the departure of an assistant that she had liked. Taking the time to be attentive to someone in routines is thus also a practical way to help identify and resolve issues that a person is facing[v].

Meetings and decision processes

            Among home team members, informal discussions about the meaning of events that are points of conflict within a home are on-going . These issues also become an important focus of the weekly team meeting. Although in relational matters and recreational time there is an attempt to minimize the staff-client distinction, there are also set times when the assistants in the home come together to plan a weekly schedule and discuss any issues salient to people’s well-being. L’Arche meetings usually reflect and reproduce aspects of the community philosophy. In this way, participation in the meetings functions secondarily as a means of socialization for new assistants. There are three main emphases of home meetings: establishing the status of, and contributing factors for, core members’ well-being; attending to the well-being of individual assistants; and organizing administrative responsibilities.

            The meetings always begin with prayer. This often, though not always, includes a time for individual petitions and a short silent time for reflection. Long-term assistants explain that these rituals serve many functions. They quiet people’s minds, bring their thoughts fully into the space and purpose(s) of the meeting, and they re-establish a front-of-mind awareness, among those present, of the broader framework of faith and social justice in which their labour operates and derives significance. For many assistants, prayer also calls on the power and presence of the spirit to be there to guide the discussion. This ritual is usually followed by a “group check-in.” Assistants may speak of personal, familial or professional topics. They can choose to mention something that is going well, or something challenging or sad that is weighing on them. The aim of sharing is to provide people a chance to be heard and to help the team be aware of each other’s state of mind so that they can support them or give them space, as needed. Making time for these practices contributes to caregivers’ well-being.

The bulk of meeting time is spent discussing the well-being of core members including their medical health, efficacy of medications, psychological and emotional health, sociability and opportunities for physical fitness. These categories are often significantly overlapped and each person tries to share information and interpretations to help create a holistic picture of the person’s overall well-being. Core members are not treated as a group. Rather, they are discussed as individuals with highly particular ways of being in the world, desires and responses to particular triggers. For example, if a team plans a birthday party with guests for one core member who loves to socialize, they might need to also ensure extra support for another core member for whom a party will be anxiety-provoking.

The rest of the meeting is taken up with scheduling the presence and activities of people in the house to ensure that enough assistants are around to take care of basic responsibilities throughout the week and month. This process is fluid: efforts are made to accommodate the varying needs of everyone in the house, although compromises are often needed. They attempt to make the daily routine similar to those in a regular home. An assistant’s scheduled day away can change in response to either a house need or the assistant’s own desire. This flexibility reflects their philosophical emphasis on minimizing the institutional rigidity of the milieu.

Issues of sustained liminality

            The space-time structure of L’Arche communities bears some parallels to the liminal phase of the rites of passage model. In this model, there are three stages through which initiates proceed: entry (symbolic and spatial separation from regular life), liminality (period of learning and growth), and exit (re-integration) (Gennep 1960; Turner 1964). Although this model is generally not appropriate for understanding experiences of people in complex, modern societies (Cushing 1999), it can be used to understand two aspects of L’Arche communities. First, while L’Arche ultimately does not intend to be a “time out of time” or temporary space, assistants do frequently speak about their entry into L’Arche in terms of a separation from the “real world.” Second, the L’Arche moral sub-culture regulates and rewards behaviour in different ways than mainstream society, and in this way can be likened to the liminal phase of the rites of passage model. The potential for change inscribed in the L’Arche philosophy generates a sense of urgency, energy and vitality, similar to the liminal phase, that inspires people to take chances and experiment in ways they would not normally feel open to (Turner 1986). This is part of what makes it such a growthful time and place for many people.

There are at least two unintentional and negative outcomes for assistants that arise as a result of the liminal quality of life in a L’Arche home. These are burnout and feelings of separation from society. The first problem arises because there is no real temporal limit to the liminal phase of life in L'Arche, other than leaving permanently. Whereas traditional rites of passage last for a very short period—generally a week—all assistants at L’Arche stay for much longer than a week, many are not sure how long they will stay, and some stay longer than five years. Therefore, they spend extended periods of time in an environment that is partially structured to reproduce the restless, dynamic energy of a liminal period. Yet, it is nearly impossible for one to sustain that kind of energy over an extended period. This problem is complicated by the fact that assistants are called to balance the drive for change with a grounded sense of a safe home. This balancing act is difficult in an environment where there are always people in need. Consequently, many assistants who stay a year or more experience some degree of burnout, emotional exhaustion and feelings of inadequacy. Finding a better balance involves identifying one’s limits, learning ways of disengaging from the liminal space for periods of time to recuperate, and reflecting on when and how to engage again.

The second disadvantage of the felt liminality of the communities is that it encourages a continued separation of its members from the rest of the society. This unintended outcome reduces L’Arche’s ability to make their message relevant to a broader audience, as I outlined in Chapter 1. Rachel, a well-regarded assistant of two years agrees, saying:

Yes, I agree that the separation is a problem. I love L’Arche and I love the people in my house, but the longer that I live here the less connected I feel to the rest of the world. That was not what I envisioned when I came here, but it gets so busy that it is hard to make time for external connections—personal or professional.

 

The result is that assistants do accomplish a degree of growth, as any initiate should, but then they are not provided any clear exit or reintegration rituals that would specify a time to settle, take stock and integrate the growth into daily routine. Exit and reintegration rituals could also foster dialogue with other professional disability or caregiver associations to give assistants opportunities both to share the knowledge and experiences they have gained at L’Arche, and to learn of further challenges and opportunities in the field. This, in turn, might decrease their sense of separation or stagnation, and would likely return vital energy and new ideas to their L’Arche communities as well.

6.2.2 Narrative: informal storytelling 

Following Wikan (1995:263), I define narratives as “stories or talk that have intention, characters, and plight.” This definition aptly describes the stories that are commonly shared among L’Arche assistants. In fact, informal storytelling among L’Arche assistants is so common that most assistants seem to find it natural and enjoyable, but unremarkable. In this section, I examine the forms that stories take in L’Arche and the contexts in which they are told in order to highlight the role of stories in the production and reproduction of knowledge and cultural norms (i.e., enculturation). I argue that informal, everyday narratives constitute productive activity insofar as they endorse or undermine particular social realities and structures of L’Arche ideology (see also Kingfisher 1996). Ethnographic stories are used to illustrate the common uses and intended aims of these stories, and to demonstrate the effectiveness of narrative as a didactic tool. I also discuss how the prevalence of informal narratives in L’Arche can have unintended and sometimes detrimental side-effects for the assistants, their relationships and, indirectly, the quality of care for the core members.

            The prevalence of storytelling among L’Arche assistants probably originated from listening to Jean Vanier, who is an eminently gifted storyteller. His convention of formal storytelling at retreats has become a common element in most L’Arche community gatherings, training sessions, spiritual retreats and some meetings. In this section, however, the focus is on informal narratives that are shared frequently in the homes and in daily interactions. While this practice goes on among all members of their communities, including core members, I focus on the workings of this process primarily in assistant-to-assistant interactions. I think it is important to identify the vital teaching role that assistant-to-assistant stories are playing because the tendency in L’Arche has been to underplay that role in favour of highlighting the teaching role of core members[vi]. While the core members’ role is vital, I try to show here that other techniques are at work in helping an assistant become open, and able to learn from core members.

            For context, I note that narratives are not commonplace in the landscape of busy mainstream healthcare systems, where the lack of resources and taboos on intimacy with patients often result in a substantial loss of engagement. One striking example of this comes from research showing that a majority of American state hospital nurses in the study could not recall any particular stories about particular patients in the preceding month (Benner 1994:58). Other research suggests that when specific stories are told, they are often about incidents or non-compliance with section rules. Thus, stories often function solely to justify further constraints or, indirectly, the lack of attention given or rehabilitation achieved (Rhodes 1991; Young 1993; Chambliss 1996).

The lack of shared stories about clients with intellectual disabilities can be particularly problematic. Typically these people are under long-term care, many are non-verbal, and the agencies that care for people with disabilities generally have high staff-turnover rates. The result is that there are large gaps in individualized understandings of how to give the best possible care, as much that is learned about an individual client is never written down. Preferences that are discovered by one staff person over the course of a year, such as where someone likes to go for a walk, who she enjoys spending time with, or what kind of juice she likes with her medications, are often lost when that staff member leaves the agency. Informal storytelling has become a key tactic through which L’Arche works towards holding and passing on a person’s history.

 

Narrative theory, intended aims and roles of stories

            Before I discuss the functions and genres of informal narratives among assistants at L’Arche, it is necessary to outline the theoretical strands that informed my analysis of these narratives. I am interested in how the narratives provide a window into the ongoing dynamic between the ideology of L’Arche and the agency of its assistants. The ideology of L’Arche functions like that of other institutions, which, to paraphrase Young is to “convince people to do what they would not otherwise do; subvert and devalue rival perspectives; [and] serve important interests by changing or overwhelming resistances” (Young 1993:116)[vii]. Narratives are clearly sites of reproduction of the L’Arche ideology, but they are also rich sites of creativity that assistants use, intentionally and otherwise, to adapt and personalize the ideology. Assistants also use stories to achieve other self-interested and community-building goals. The assistants’ informal narratives convey information—often positive—about themselves, which speaks to both their wholeness as actors with multiple projects, and their agency or capacity to enact those projects[viii]. Their agency is not limited to self-interest. Stories that assistants share about experiences and relationships also create a sense of commonality, continuity and connection with other assistants, and within the community as a whole, and mutual support. 

            This is not the place to do a comprehensive analysis of the construction of these stories, but I outline some common norms. As Bruner explains, the Russian formalists identify three aspects of all stories: the theme (mythic plight, moral leitmotif), discourse (plot; variation on the theme), and genre (language, position) (1986:17-18). The five most common themes of informal L’Arche stories overlap and support each other. These are: commonality and difference; the relations between the strong and the weak; personal responsibility for unjust power imbalances; the power of spiritual faith; and the importance of the little things.

The discourse or common plot lines are more numerous, but usually focus on the inversion of expected roles for people with intellectual disabilities. Typical of any good story, “to be worth telling, a narrative must run counter to expectancy” (Bruner 1996:139; Bruner 1986:19). The most common stories revolve around what an assistant learned from a core member, often through the course of a difficult experience. Such a story inverts the social assumptions that i)caregivers teach the clients and ii)difficulties are always bad. For example, one talkative young seminarian often tells people the story about spending one practicum week in a L’Arche home where none of the core members used words to express themselves. The twist in his story is that at first he thought that this would be a painfully uninteresting experience for him given his love of conversation, until someone helped him to see the opportunity to enjoy the gifts of quiet time implicit in the core members’ silence. Other peoples’ stories that I share in this thesis, reveal instances when the core member has been the wise sage or exhibited extraordinary humour, good sense or absolute cunning.

Functions of informal narratives

Informal stories shared in L’Arche have four primary roles or functions that relate to sociability, problem-solving, identity and their utility as a didactic tool[ix]. The roles overlap in significant ways. They are primarily analytical constructs that I’ve developed, not everyday discursive categories of assistants (although a few assistants use them). Narratives can play overt or covert roles, or both. The covert roles are not always intentional. Rather, they can emerge as a culturally normative practice that is sometimes reproduced with little thought. The first two roles are somewhat self-explanatory, and do not directly contribute to the chapter’s aim of elaborating on the reproduction of the L’Arche ideology and the process of enculturation of assistants. The discussion below, therefore, focuses on the roles of narrative in a) teaching and b) identity production.

a) The use of narratives as a didactic mechanism

            In this section, I demonstrate how storytelling is effectively used at L’Arche to reproduce knowledge of the agency’s ideology of caregiving. I also point out ways in which narratives sometimes fail to produce desired effects and can result in problematic side-effects. New assistants are subjectively reconstituted as they listen to, and learn to tell stories in a particular manner. Participating in exchanging stories also changes their relation to the core members, who are the objects of narrative knowledge—usually a positive shift. This teaches them to be the particular kind of caregivers and people that L’Arche needs.

Bruner argues that in narratives, action is always portrayed as happening for a reason (1996:136). He observes that what “people do in narratives is never by chance, nor is it strictly determined by cause and effect” (Bruner 1996:136). People tell stories when the protagonist, (who is also often the teller), could have made other choices, but did not, and he wants the listener to know that. Conveying what he did not do, (for example, taking the easy way out), can be as important to the purpose, force and meaning of the story as what he did do. Narratives are thus intended to tell the listener something about the teller, the actors and the culture, as well as the event or explicit object of the story. Narratives contain information about what constitutes unacceptable or acceptable behaviours or actions in a particular scenario. Many stories are formed around an instance where the assistant telling the story made a poor choice, and the core member plays the role of demonstrating or teaching them why this was unhelpful or inappropriate.

Narratives can teach moral lessons. While spirituality is fundamental to the origins of L’Arche, and many assistants experience spiritual growth and conversion (Hyrniuk 2001), the subjective transition of assistants is also significantly a moral shift, made possible by providing them with an alternative moral framework. I argue here that the most significant role of storytelling in L’Arche is that stories fire the moral imagination of the caregivers. Stories always hold in tension the details of a particular event and the often moral, universal themes within which the stories make sense, and to which they speak. The particulars of an event help stories to resonate with caregivers’ everyday experience and make the ideology liveable for them. Details also humanize and individualize people with intellectual disabilities in a way that formal ideology and training never could because they are inherently generic. Stories allow the few L’Arche principles to be continually re-told, re-lived and re-produced without seeming “tired” because they are freshened with new characters and particulars[x]. As Charles Taylor has noted, it is in the particulars that genuine compassion is forged (Taylor 1994).

The following story exemplifies how the narrative is used to teach lessons and morals in L’Arche homes. Jacob has lived in his L’Arche community in Ontario for over twenty-five years. When he first came, the community had farmland and he loved to work with the animals. He still works at another farm nearby on some days, while on other days he does various jobs around his L’Arche community such as delivering the mail from the office to the houses. When Jacob arrives in a home, he calls out for an assistant to come and read out the names on each piece of mail. Assistants usually enjoy this ritual for a few weeks, but then most seem to grow tired of it and try to avoid going through it. What often turns their behaviour back around is a simple story that has been told innumerable times. If experienced assistants are around, they will often tell their version of the “why it is important to read the mail with Jacob” story to the new person[xi]. The premise of the story is that, unlike some people with intellectual disabilities, Jacob is very aware that he is different from the assistants, and he is conscious of the imbalance between them. This consciousness pushes him to be very independent. For example, he rejects assistance with his daily hygiene routines. He also often does nice things for other people, and assistants who have known him a long time think that this is partly his way of restoring some of the balance to his relationships. Doing the mail together is another way to acknowledge the productive role he plays and therefore to restore some balance.

            An assistant who hears these stories about Jacob, with their embedded moral lessons, now has an alternative interpretive framework for understanding Jacob’s actions and his motives. Ideally, she uses that framework to inform her own (now) moral decision about how to respond to Jacob’s mail visits more empathetically. Joanne, a former assistant, told me that she still thinks about Jacob yelling “Mail!” and how it always reminded her of how important it is to acknowledge what other people mean to her, and to spend time with them when she can, rather than rushing around. The assistant also learns more general lessons from this story about the L’Arche approach to caregiving, including how to talk about experience and how to interact with core members. 

            Neil is a former L’Arche director. He often tells new assistants a story about a significant conversation he had years ago with his friend, Frank, who is a core member. The context for the story is that high staff-turnover rates cause constant disruption in routines and relationships for people with disabilities (Braddock and Mitchell 1992). Many assistants leave at the end of the summer to go to school. One year, Frank was finding this exodus particularly hard. Frank is thoughtful and very expressive, and he and Neil had a good conversation about how they both found this situation sad. Neil relates how he wanted to encourage Frank to see what had been accomplished, not just the loss, in saying:

You know there is also the good side. You really changed those assistants’ lives by welcoming them to share your home. Many assistants have told me how much they learned from your example, and who you are as a person. Frank paused to think about that for awhile. Then he looked up and said, “If that’s true, Neil, then how come no one has ever thanked me?

 

This conversation happened years ago. L’Arche is much more conscious now of cultivating a spirit of gratitude among assistants. Still, the story contains lessons that might never grow old. Neil claims this story as a turning point in his understanding of how to be a better L’Arche assistant. He also uses the story as a didactic tool to convey those embedded lessons to new assistants. The story conveys particular details about Frank and his response to staff turnover that would be important for people who live with him to be aware of. It also evokes a way of perceiving a person with intellectual disabilities that is not obvious to new assistants. For example, the story indicates the depth and complexity of Frank’s emotions, and his awareness and potential vulnerability in relationships. It also reveals that Frank’s feelings about at least some of his caregivers have grown to surpass employee status. This all highlights the unavoidably moral nature of engaging fully in dependency relations (Kittay 1999).

i) How narratives teach

            This story also reveals something about how narratives can teach. Bruner argues convincingly that narratives are rarely innocent or “unsponsored”(1996:136-8). To grasp what he means, we must first consider how we learn to think about and interpret experience, and how we learn to evaluate experience in moral terms. Neither one is natural or obvious. Reiff (1966:261) suggests that what “is moral is not ‘self-evident’… [but] becomes and remains self-evident only within a powerful and compelling system of culture.”[xii]  L’Arche is clearly a cultural system, in that it prescribes moral norms, but a cultural system’s effects go even further. It also provides the categories of thought that construct how we experience life, and how we make sense of it. This in turn influences what parts of the flow of our lives we come to consider narrative-worthy, meaningful experiences. “What counts as experience is neither straightforward nor self-evident” (my emphasis) (Scott 1992b) (see also Turner 1986:35). So experience itself is always already an interpretation, and that interpretation has been partially shaped by listening to more experienced people’s narratives, which indirectly teach the listener what is significant.

Narratives thus teach through indicating, and thereby reproducing, the norms and parameters of a particular cultural system. Narrators choose to include certain experiences or events and not others in stories, which tacitly teach new caregivers what counts as experience or moral behaviour and what does not count (in this particular moral world). It is as important to attend to what themes are not included in stories. As Wikan argues, what is not said can be as telling about cultural values as what is said (1995:266). For example, in L’Arche, it is rare to hear conversations about a core member’s etiology, medical or psychiatric diagnosis or private history outside of team meetings dedicated to this purpose; this is considered disrespectful. This reinforces L’Arche’s desire to help others see them as individuals, not as their disability, and to mitigate against the tendency for people to see them as chronically sick or abnormal.

However, this unofficial narrative regime also has its shortcomings. Along with the sincere attempt to heighten assistants’ awareness of the gifts and lessons of core members by encouraging stories about them, a corollary tendency has developed whereby assistants seldom speak about their gifts or contribution to the home and the people they care for. Assistants’ gifts are discussed in annual reviews, or if the assistant is going through a hard time, but they are only a minimally sanctioned topic of everyday, informal stories. Some assistants found this lack of acknowledgment hard over time, and some felt it usurped their ability to feel good about their work and presence in the home. As one former assistant explains:

I guess the thing I found hardest was that there was little care or attention paid to the assistants, who were mostly these young, idealistic, searching people who were sacrificing a lot of themselves… [but] life mainly revolved around the people with disabilities … and not the needs of the assistants.

 

            Long-term assistants counter that they are aware of this concern but that a concentrated effort is required to enculturate new people into an appreciation of core members’ gifts. Moreover, they point to the fact that L’Arche is not intended to be a therapeutic community for assistants. I cannot resolve this issue here, but it is important to recognize both the constructive and limiting dimensions of the subtlety of a narrative regime.

ii) Unpredictable effects of narrative

            Assistants can have very different experiences in L’Arche in spite of the common culture. In this section, I discuss two caregivers whose time in L'Arche shared many common elements, and yet their responses to the environment were quite divergent. I argue that the enculturation of these two caregivers, or lack thereof, was in part the result of the strengths and limitations of applying narrative practices in everyday care. The first person is considered a L’Arche success story, while the second person’s situation is not thought to have been fecund for him or those around him.

            Raoul was 19 years old when he came to L’Arche after a year of university followed by a year working at small jobs. He became an assistant in Blue House, a home with a full complement of experienced assistants, in a community that was not facing any major issues at the time. Raoul thus received solid modelling by experienced assistants through stories, observations, retreats and formal training. By all accounts, his time as an assistant was fruitful for both himself and those he lived with and cared for. We had a casual discussion when he had been there for about a year. He talked about hearing a story, told by the pastor, Joe, that contained lessons similar to the story of Frank and Neil. I asked him whether that story affected how he interacted in the home with Jeremy. Jeremy is in his mid-thirties and loves country music, dancing with a partner who wheels him about, and being with friends. He uses a wheelchair as his body is significantly underdeveloped and his muscles very tense. He does not use words to communicate although he often vocalizes . The following passage is Raoul’s response to my question:[xiii]

            Joe’s story was pretty moving because he also talked to us about what we could do differently after that. But since being here, I’ve heard lots of stories from different assistants about core members. For sure looking back, all of it made me realise that Jeremy is a lot more than just someone that can’t eat by himself and yells a lot. You don’t think about that at first because you are just a bit overwhelmed by him. He’s so different from anyone I’ve ever hung out with obviously. So it was hard to know how to relate to him. Like at first in the bath, I just sort of did the bare minimum of what needed to be done, because it felt odd to be in there with him naked – I didn’t know what to do.

 

            But later Chris told me a story about a time when he noticed how incredibly relaxed Jeremy’s muscles and body got when he stayed in the bath longer, and how happy he seemed because the water eventually relieved the constant pressure on his joints. Still, he can’t be in there alone—someone has to stay with him so he doesn’t go under. Since he told me that, I’ve tried to stay in longer with him, and do different things to make it fun like playing guitar or reading, or even prayer. We both like music, and we’ve found one song to play that he really seems to like a lot! Anyway, I would definitely say that I am more in tune with him now—I can pick up on when he’s feeling anxious or uncomfortable, like if some guest to the house is staring at him … and I can respond to him better, I think. The same goes for other people in the house now—I am more creative now about trying to get inside their head to figure out what they’d like.

 

Raoul’s case is a classic example of enculturation through storytelling, but it also illustrates two other points. First, as I noted with Frank’s story, narratives teach particular details about caring for and relating to a certain individual well, but there is also enough interpretive latitude for the lessons embedded in them to be adapted to other situations. Second, it demonstrates how teaching through stories can give caregivers a sense that they are an important element in the caregiving mix, and not just doing physical labour. The latitude in stories helps caregivers to feel that their choices, interpretations and creative initiative will actually make a difference to the person’s well-being[xiv]. This is so because, as I wrote earlier, narratives imply that things could have been otherwise without the (moral) agency of the protagonist. Narrative provides the assistant with the space to decide how to apply the lessons in particular situations that are often morally ambiguous. As Raoul talks, he recalls negotiating and testing the moral terms of what is “due” Jeremy beyond basic physical care.

Liam was 18 years old and just out of high school when he came to the same community and house one year before Raoul arrived. In spite of living under similar conditions in the home and hearing roughly the same stories from the same people, Liam never seemed to grasp the ideas that were being conveyed to him in narratives. At L’Arche, there is a cultural reticence to give people direct orders on how to be or behave[xv], which seems to be a by-product of their commitment to diversity. With Liam, the issue was not that he did not perform his role well, but that he did so without actually believing in the value (for others or his own growth) of being that way. My aim is not to determine why that was so for Liam, rather it is to discuss how Liam and Raoul illustrate two important limits of narratives as enculturation mechanisms.

First, although narratives are often credited with conveying moral lessons (Narayan 1989), in many situations informal, everyday narratives are morally ambiguous. They gesture at a definition of appropriate behaviour but they do not provide rigid guidelines or prescriptions. In this case, for example, although a certain level of physical care and respect is required at L’Arche, the narrative form of teaching gave Liam and Raoul a degree of autonomy to decide what they felt was “morally sufficient” care for Jeremy. Thus, even when used as a didactic tool, narratives are generally used by narrators to hint at, rather than specify, the behaviour or belief they hope to evoke in their listeners.

Occasionally, the ambiguity of narratives plays a role in unfortunate scenarios with assistants. I interviewed a handful of people[xvi] who had tried to confront their respective communities about how they were being treated personally, or regarding concerns about how the lived reality in their homes did not match the official rhetoric. All of them, however, found it hard to argue their case about unmet expectations because the expectations laid down in the narratives are ambiguous to begin with. Assistants talk about how leadership uses that grey area or ambiguity to deflect criticism and avoid responding to it with clear answers (see also Johnston 1987:7). This issue deserves more attention than I give it here, but it seems to point to the need for a mechanism for processing anonymous feedback that would pose less risk to the assistant. For instance, keeping some kind of professional person who is associated with the community on a retainer fee to be available to listen to, and report back on sensitive issues and feedback. The person must be familiar with but external to L’Arche, (e.g. nurse, conflict management consultant, human resources consultant, therapist) and be broadly perceived as politically neutral and thus able to both hold the source of the feedback in confidence, and report back honestly and constructively on this issues. They should report to a committee of people from varying levels of experience in the community, including core members, in order to ensure openness and follow-up, or corrective, action.

To return to the two young men, the fact that Liam (intentionally or not) did not undergo or undertake the subjective transformation that most assistants do, suggests that narratives are not binding. Their efficacy is often based on the assumption that the listener is ready, or is willing, to accept the particular moral system that supports that reality. As has been explained in relation to the limits of the human rights model—you cannot legislate someone to care (Ignatieff 1984; Ignatieff 2000).

b) Identity production

             L’Arche assistants also use stories to construct their own identities or sense of self, within L’Arche. This function of the narrative is covert, as it is a sub-text of the stories, which conveys information about the teller. People craft themselves and hope to influence others’ perceptions of them through the role that they, themselves, play in the stories they tell (Kondo 1990; Wikan1992:464; Fulford 1999:14). This tool is particularly potent and popular in L’Arche, partly because it is an environment in which many traditional tools and measures for crafting one’s identity, status and achievements have been stripped away or are not culturally legitimate in this sub-culture that advocates anti-materialist, anti-competitive and anti-individualist values.

Whether intentionally or inadvertently, assistants regularly infuse their stories with messages that represent their beliefs, prove their growth, elicit affirmation and acknowledgement, or enhance their status, authority and credibility by showing competence in core L’Arche values like patience, forgiveness or spiritual growth. Most often this works very well because of the shared understanding that it is inappropriate to express their personal qualities and achievements in a more direct way. There are, however, two problems with this practice in L’Arche. First, because it is indirect, the competitiveness that can underlie such messages is not usually named as such. Competitiveness is not culturally legitimate in L'Arche, so assistants sometimes tell the stories as if the identity/competition agenda does not exist in order to create the effect of an unsponsored story. In such cases, their healthy desire to give and serve can become lost, or at least disfigured and insincere.

There are also cases where people present themselves in stories as if they continue to enjoy the role of assistant, when those around them experience them as becoming stagnant, closed to change, or dissatisfied, but unwilling (or unable) to leave. The tacit claim to wellness in their stories makes it difficult to discuss other options with them. A few assistants even take advantage of the story-telling practice by telling petty or unkind stories about another assistant, which is much less productive than dealing with the person directly. This is not terribly widespread.

            Second, the daily narratives often made the long-term assistants, appear destined for this vocation in their own stories. Although long-term assistants occasionally also share stories about times of confusion, these are infrequent in everyday settings, and tend to be shared in formal sharing or training sessions. While I am not suggesting that long-term assistants should reveal their vulnerabilities and uncertainties every day, I want to highlight how the relative infrequency of such stories inadvertently creates an image for new assistants that may be misleading and unhelpful to overall organization goals. Many short-term assistants that I interviewed expressed that they liked L’Arche very much, but that they felt inadequate in terms of their commitment to the ideology or their ability to have good relationships with core members in comparison with long-term assistants.

The part they are missing, and which I was privileged to hear in interviews with many long-term assistants, is that these people also went through times of significant conflict and lack of understanding with the ideology, the lifestyle, the people and other dimensions of this calling. Fulford (1999) explains that our habit of treating history like a story, “keeps us from understanding that the final result was not preordained… A story implies that events had to turn out the way they did” (Fulford 1999:38). Instead, we must remember how people experienced events at the time when “[the] future for them was a matter of contingency, accident, surprise … things we forget when we assemble events into stories” (Fulford 1999:38). Stories are powerful tools for engaging the imagination of caregivers and helping them to imagine themselves into a new way of being. Perhaps if long-term assistants had more systematic forums and forms in which they could relate their past experiences, they could be encouraged to add that layering dimension to how newer assistants perceive them. This concern deserves further attention from L’Arche given their current desire to extend assistants’ tenures and to address the reasons why many assistants leave after just one year.

            Other than helping people to position themselves in relation to others, the stories that indirectly tell us about the teller can be a healthy way for assistants to claim a degree of agency. Assistants use the stories to establish and express their interpretation of L’Arche ideology, or how they feel it needs to be adapted to suit a particular person, house or time period. Sam for example, considers L’Arche’s message about “accepting people for who they are” as essential. This is reflected in his behaviour with core members and assistants, and is also apparent in his stories, which tend to underscore his delight in people’s idiosyncrasies. Lisa believes that the L’Arche attempt to minimize sedative and mood-altering pharmaceutical interventions is symbolic of the overall respect for people’s rights, and her stories often reflect that belief. Everyday narratives help assistants to articulate, negotiate and express their agency, which lends intrinsic satisfaction to a vocation.

6.3 Strategies

 

            To achieve the outcomes described at the beginning of this chapter, L’Arche uses three core strategies—redefining productivity as fecundity, revalorizing difference and providing care for the caregiver—in tandem with the tactics (storytelling and spatio-temporal layout). I discuss the value of these strategies in supporting L’Arche’s goals through ethnographic examples, as well as the inadvertent side-effects that the strategies can engender in the culture of L’Arche. It is not meant to be an exhaustive list of L’Arche strategies, but rather an attempt to name those most salient to my analytical aims. Future researchers, with different questions and disciplinary backgrounds, could usefully add to these three. More space is given to the third strategy, care for the caregiver, simply because many examples and points related to the other two strategies are discussed elsewhere in the thesis. However, they are all equally important.

            Ethnographies should be concerned with revealing both the desperations and aspirations of those we study (Cassell 2000:619). For this analysis, I have taken this directive to mean that the research should reflect both what people are aspiring to be or accomplish, and what sort of desire, deficiency or desperation with the status quo is the source of their need to do something differently. The three strategies discussed here are all notable partially because they are not frequently undertaken or employed in our society. In this way, the strategies reflect the agency of the assistants in their desire to engage the world in an atypical way. These strategies are both conceptual and grounded in practice. They are adopted, adapted and sometimes rejected by assistants and core members depending on their own projects and particular aspirations.

6.3.1 Productivity redefined as fecundity/generativity 

 

            One of the core strategic concerns of L’Arche is to present and promote an alternative, broadened interpretation of the common Western notion of productivity. Doing so helps to create a space for (re)valuing the lives, gifts and activities of people with intellectual disabilities. I provide a detailed description of their alternative concept below. This strategy is reflected in what is expected of assistants, how “success” is measured for core members, and in how the organization’s priorities are worked out. I discuss the ideological and spiritual history of this strategy at length in Chapter 4. Descriptions of how this strategy is enacted in L’Arche can be found in section 3.1 of this chapter, and in section 7.4.1. In this section, I briefly outline the strategy whereby productivity is redefined as fecundity, and describe how assistants understand the strategy. I then examine ways in which this notion of productivity contributes to some issues, such as the blurring of personal and work boundaries that can have an array of problematic effects for assistants.

In the following passage, Downey (1986:48) paraphrases Vanier’s central thoughts on the place of standard ideas of productivity in L’Arche:

In accord with the original aim of L’Arche, work productivity, and efficiency, important as they may be to the growth of any group, are seen as secondary to human and spiritual progress. For Vanier, this kind of progress is rooted in receptivity, respect, and a profound desire to see each person in the community achieve the fullest development possible.

 

Productivity is important but it is secondary to more humanistic concerns. Following Vanier’s early lead, L’Arche has come to advocate for the primacy of what the French commonly call “fecundité” as its alternative to productivity. Since fecundity is not commonly used in English, words like fruitfulness and generativity have been used in the English North American communities. Henri Nouwen, A Dutch preist who lived in L'Arche Daybreak used to say “When we die, God will not ask us whether our lives have been successful; God will ask us if our lives have been fruitful” (MacMillan 2001). In an interview, Diane, a long-term assistant explained:

I wouldn’t stay if I didn’t feel that my life was bearing fruit. I think this aspect of fruitfulness is an important theme in L’Arche… the fruitfulness of core members’ lives means acknowledging that they can give life to others.

 

Assistants are there to help create space within which to draw out those gifts. Fruitfulness is different in character from either merely producing physical care for people, or from a straight modernist notion of self-improvement. Jeff is particularly articulate about this. He is a former long-term assistant who lived with L’Arche in two countries. He says:

The whole idea of personal change—the majority of the time it’s utilitarian and feeds into the capitalist ideology where ‘better’ is equated with productiveness, so the more productive you are, the better, or more valued, you are… At it’s truest point, L’Arche is not intent to fix or better things, or make people something they’re not. It is about being yourself, and unbecoming all the false stuff that we carry around… Again it is the example of the core members that compels us into that honesty.

 

The brief dictionary definitions of productivity, fecundity and fruitfulness sound quite similar and the latter two actually include the word productive[xvii] (Sinclair 1994). In common parlance, the word productivity is more closely associated with capitalist enterprise and industry than the other two, and its definition is the only one including a reference to industry. In the West, the particular capitalist understanding of productive activities has become hegemonic since it is woven into our legal-political definitions in a way that limits other sub-cultural groups from choosing to follow an alternative way (Povinelli 1993).

            The Latin roots for productive and fecund are not dissimilar, meaning “to bring forth” and “offspring” respectively (Sinclair 1994). It is salient here, however, that the root of fruitfulness or fruit, comes from the Latin fructus or frui meaning enjoyment. This seems to capture at least part of what L’Arche is trying to achieve in its redefinition of productivity as fruitfulness, in that it refers to people enjoying each other’s presence and having the time to learn to see, appreciate and celebrate non-traditional gifts. Living in a L’Arche house reveals that most core members enjoy and appreciate simply having your company as much as anything like how great you cook, or how organized you are.

            Although I do not want to take up an analysis here of the validity of Erikson’s psychosocial developmental model, I do want to introduce the term generativity, which he uses as a marker of adult virtue[xviii]. It resonates with, and adds clarity to, the L’Arche concept of fruitfulness. Coon (1989) says that:

According to Erikson, an interest in guiding the next generation is the main source of balance in mature adulthood. This quality, called generativity, is expressed by caring about oneself, one's children, and the future… In any case, a person's concern and energies must be broadened to include the welfare of others and of society as a whole… Failure in this, is marked by a stagnant concern with one's own needs and comforts. Life loses meaning…

 

Moreover, McAdams (2001) argues that:

 

A growing body of psychological research shows that being highly generative is a sign of psychological health and maturity. People who score high on measures of generativity tend to report higher levels of happiness and well being in life, compared to people who score low. High generativity is also associated with low levels of depression and anxiety.

 

Jack’s (an assistant) experience echoes parts of the outward shift to generativity or fruitfulness:

I realize how much of my spiritual life before had been so striving-oriented; trying to overcome my own problems. Whereas now [after being in L’Arche] I see how much spirituality there is in the nurturing side of life. In making the choice to help others, and not just focus on my own stuff all the time… It also seems to bring out good things in me.

 

            The L’Arche redefinition of productivity as fruitfulness yields many positive outcomes for all members of the community, and certainly for the quality of care and relations that can be provided. Still, this strategy creates a number of problems for the community. L’Arche is regularly required to justify their access to government funds for care by accomplishing a set of government objectives and tasks that are based on an understanding of caregiving that is different in certain basic ways from that of L’Arche. In making the case for their approach and values, they are required to use the terms of dominant approaches, parts of which inherently preclude some L’Arche goals. In practice, internal research shows that the increasing time spent on requisite ministry paperwork and procedures impinges on the time that L’Arche assistants have historically spent just “being with” core members and getting to know them (Lukeman 2001), as I elaborate in Chapter 7. One house assistant, Kevin, explains his frustration with this situation:

There is so much paperwork now that heads of houses have to do all this bureaucratic crap. Who wants to sit down in the evening to do paperwork when you could be sitting down to be with one of the folks? And if you choose to hang out with the folks because that is important too, then you end up having to do the other crap on your day away when you should be resting!

 

Internally, the prevalent notion of fruitfulness often has the effect of blurring the line between what parts of the day constitute work and those parts that are discretionary time. Although L’Arche prefers not to use the term “work” when assistants discuss this particular subject, they usually make a clear distinction between “time on” and “my time” even when they genuinely enjoy being in the house. Although some of the intentional effects of this strategy are to create commonality and solidarity, the unintentional side-effects for assistants are not always healthy. Some feel that the blurring leaves them unsure of when it is legitimate to have time for themselves. If they are continually deferring their own needs, this can lead to exhaustion and resentment, which blocks their ability to care well. Noel, a former assistant, commented on this point, saying:

The difficulty I find with the foyer model is this lack of work/home separation. Yes this feels like my home, and I like people and I grow here; but it is also my workplace, even though we are not supposed to say that; but I give baths and do interventions for health and violence prevention, and I do the dishes and—you know, having them both so close together can get very tiring and confusing. You need space.

 

            Although most assistants find ways to create and manage boundaries for their time in order to mitigate this blurring of lines, many still reported that they perceived a constant pressure to rescind those boundaries. This concern is not unique to L’Arche. Other research with residential direct care workers revealed the tension they experience to defer their needs in favour of the clients’ needs for sociability and control (Ungerson 1999:586). Although, as an organization, L’Arche in Canada has officially conveyed to new assistants that self-care and boundaries are important, sometimes the tacit cultural messages tell them otherwise.

This problem is not just about time away—it also affects the assistants’ ability to feel a sense of accomplishment and confidence about the contribution or work that they have given. When the lines between professional responsibility and personal leisure are blurred, there is the danger that the labour, concern and responsibility of the assistant will go unacknowledged. Lack of acknowledgement can be an issue for many professions, but it is particularly hard for direct-care workers, who are asked to be emotionally engaged as part of their job, meaning that it is often not a choice. I do not want to overstate this point, or suggest that assistants are faking their enjoyment. Yet, not all aspects of work are enjoyable, and people have bad days that make even the normally-enjoyable, relational aspects feel like a burden. This fact should not be lost in the attempt to colour all of what the assistants do with a tone of fruitfulness.

6.3.2 Revalorizing difference

            The desire to revalorize difference and disability is a central theme in L’Arche. This theme is so interwoven into every aspect of what L’Arche does that many dimensions of it have already been discussed in earlier parts of this thesis. The revalorization of difference in and for relationships is also the topic of Chapter 7. However, because the L’Arche approach to revalorizing difference promotes two concepts that are anthropologically relevant, I elaborate on those concepts in detail here. The first concept is their promotion of the social value of diversity, and the second is the effort to achieve a balance of power in relationships between caregivers and people with intellectual disabilities.

            To begin, I describe the case that L’Arche makes for the value of diversity, and I situate it against two other arguments for diversity that commonly appear in the literature and public sphere. Then I outline how, within their moral sub-culture, L’Arche assistants attempt to shift the power imbalance that can occur in caregiver-core member relationships by making it their responsibility to learn to recognize the value of people with intellectual disabilities on their own terms. Such a turn in the regime of recognition helps to shift the terms of what counts as valuable. This strategy can also have the unintended side-effect of devaluing qualities that are required for strong leadership among L’Arche assistants. I close this section with a discussion of some of the problems that this situation creates.

Different forms of the case for diversity

            There are various ways to make a case for the value of diversity in our society. The disability field has employed many of these in its efforts to secure resources for people with intellectual disabilities, and to lobby for social policy changes in their favour. I briefly outline some of the arguments for diversity, and which one L’Arche is pioneering. L’Arche does not aim to ignore the material reality of the differences that intellectual and physical disabilities create. It does, however, attempt to change the terms on which these differences are considered. They point out that while society’s dominant values promote intelligence, independence, beauty and competition, these are culturally-shaped values that contribute to feelings of despair, inadequacy and exclusion at least as often as they produce happiness, regardless of whether one has a disability or not. Vanier writes that people with intellectual disabilities tend to embody another set of values, with which they are able to teach others about an alternative way of being in the world, if people are open to them (1995, 1998). Trevor, a L’Arche director, says that people with intellectual disabilities need a particular space in which to create this openness. Thus, he explains, “L’Arche is about creating community; a place where each person, Jack the banker or Alliya the core member can find a place to be respected and valued, and can use their gifts.”

            In order to contextualize the L’Arche position on difference, I outline three categories of arguments that have been made in the field of caregiving to protect or value diversity that stems from disabilities. The various types of arguments overlap to some extent, and approaches like community integration draw on more than one line of reasoning. I have tried to arrange the categories in terms of the degree to which they problematize the culturally-constructed stigma of disability and difference. I show that the aim of the argument in favour of diversity is to avert the stigma associated with impairment and to decentralize its place in people’s identities. Difference matters, but it is important not to trap marginalized people in their difference (Tsing 1993:18).

            The basic case for diversity is the humanitarian argument. It asserts that being human, alone, is the basis or criterion for worthiness of being treated fairly in society, regardless of a person’s difference or disability. In this century, this line of reasoning is reflected in early hopes to support people with intellectual disabilities to [re]enter regular life through “rehabilitation,” and later normalization, and most recently the disability rights movement. Clearly, however, caring for people in spite of this fundamental aspect of who they are leaves the negative construction of difference and disability unproblematized. This basic case continues to work from a deficit model of disability, although it argues that the person’s rights still supersede their disability. This position has been instrumental in generating significant gains in the material quality of life, integration and access to opportunities for people with disabilities, and has culminated in the Americans with Disabilities Act in the United States. These gains are a critical foundation for the moderate and strong cases for diversity.

            The moderate case for diversity is reflected in parent movements, self-advocacy movements, such as People First, and many spiritual and idealistic organizations such as Camphill, or L’Arche. The moderate argument differs from the basic case for diversity in two fundamental ways. First, it aims to change the wholly negative construction of difference by arguing that the disability or impairment need not be an insurmountable barrier to commonality or relationship. In other words, people with disabilities are about more than their disability, and have intrinsic, individual value beyond merely their humanness. Second, the moderate case moves toward an ecological style argument, which says that community integration creates social diversity that is good for everyone because it contributes to our long-term cultural adaptability. While this case is more hopeful, it still does not fundamentally undermine the culturally-constructed stigma tied to the impairment itself.

            The strong case for diversity assumes and endorses the first two cases. It goes beyond them, however, to say that the difference or impairment itself has instrumental value to enrich and contribute to mainstream society. Thus differences and/or disabilities are not merely tolerated or accepted because tolerance will not hurt, or because it is the “right thing to do.” The strong case also aims to undermine the belief that people with impairments always wish they did not have them or find nothing redeeming in them. This is not to say that people would wish for the impairment prospectively, but that they can see retrospectively how the cognitive or physical impairment is often connected with positive characteristics they have developed.[xix] From this position, L’Arche asserts that it is worth the effort (and cost) to support the inclusion of people with intellectual disabilities in broader society both for their sake, as in the basic position, but also for the broader social value generated for everyone. This seems like a more promising path for promoting genuine inclusion than asking the public to be nice.

Another perspective on the intrinsic value of difference comes from an aboriginal tribe who believe that individual differences, abnormalities and “idiosyncrasies are grist for the social mill” (Jackson 1995:100). Normalization approaches are effective in many ways, but they can go too far because they begin with the unsubstantiated assumption that what is “normal” in our society is also desirable for everyone (Vanier 1995:58-9). Difference matters and it need not be equalized or flattened in order for people to get along, if it can be seen as enriching. The local moral sub-culture that L’Arche creates is crucial for facilitating this shifted moral outlook. L’Arche socializes people to a new moral sensibility in which what counts as “value” is broadened. This encourages people to see and appreciate the value of non-traditional gifts of people with intellectual disabilities. In the next chapter, I show how L’Arche operationalizes this principle into mutually growthful relationships across difference, in which the person with a disability is often named as the teacher. In summary, the strong case for diversity tries to (re)naturalize and de-stigmatize (but not romanticize) difference and disability by showing ways in which they can be understood as a gift, not a disadvantage.

L’Arche thus makes a case for the revalorization of difference and disability, but there are further concerns. Who is responsible to make the case, and who decides whether it is convincing? I address these concerns below. 

Shifting roles in the regime of recognition

            Marginalized people are often required to perform for, and establish their worth to, the people who control access to resources that they need. Those with the power establish what traits are valued in what Povinelli (2001) calls the dominant “regime of recognition.” People with intellectual disabilities must conform to those norms in order to access necessary resources. The dominant regime asks the marginalized group to “show us that you/your culture has value as defined and calculated on our terms,” even when such terms devalue or undermine the validity of the other culture (Povinelli 2001). People with intellectual disabilities are not the only group that must adjust to such regimes. In fact, many groups do not simply adjust but choose to “protest, reinterpret and embellish their exclusion” (Tsing 1993:5). The cognitive impairments of people with intellectual disabilities, however, means that this group is less able than some other groups, such as women suffragettes or black power activists, to engage in such creative marginality[xx]. 

L’Arche ideology challenges the idea that the people with disabilities should always bear the burden of change by proposing that people without disabilities also be responsible for changing and learning to understand disability differently. L’Arche creates an alternative, local regime of recognition through their ideas, tactics and strategies that facilitate recognition and valuing of non-traditional gifts. This local regime shifts part of the onus of proving worth or value away from the shoulders of the core members and onto the assistants, who must learn how to operate in this inverted regime of recognition. Achieving this subjective shift takes time, practice and a conscious and concerted effort on behalf of the assistant. This is clear in Adrienne’s discussion of how she felt about her relationship with Patricia (a core member) during the initial stages of their relationship, and how her feelings were different once she, herself, became more open to the value of knowing Patricia. She explains:

     You know we stay away from saying that these are ‘staff-client relationships’. I’ve been staff in a group home and it is a whole different experience. It took me a long time to understand the difference here because initially I came in with this model of ‘Here’s this helpless, handicapped person that I’m going to help.’ That is what we’re raised to believe, you know? As much as I wanted to feel differently about Patricia, and I’d say things differently with my words, it wasn’t different in my gut or in my heart for awhile.

 

     Eventually Patricia just cut through all of my barriers without my realizing that I was changing. I was moved by her acceptance and over time, her trust of me. She saw all sides of me—I mean, when I lost my patience or was in a bad mood—and she still accepted me for who I was. [Adrienne]

 

            In undertaking this moral shift in perspective and responsibility, to learn to recognize the value in others’ ways of being, many assistants report an accompanying shift in their own self-concept. The daily practice of learning to seek out what is good and special in others seems to help them do the same for themselves. Hyrniuk’s (2001) research with L’Arche assistants discusses how this process helps assistants through regular developmental stages of overcoming feelings of shame, guilt and insecurity. The shift in the regime of recognition is an important step towards reducing the burden of stigma associated with intellectual disability.

Side-effect issue

            In the spirit of the Beatitudes and Corinthians[xxi] (1:27), L’Arche intends to raise the status of the weak and to remind people that the accomplishments and trappings of the mighty do not always make them wise or happy, and do not make them better than the little people in the world. This is a good intention that is largely effective in helping assistants to appreciate others who have more challenges to deal with in life. There are, however, unforeseen side-effects of the strategy of revalorizing difference that deserve some consideration as they may relate to the present shortage of people who are willing to take on leadership roles within L’Arche. Some would argue that within the current body of assistants there simply are not enough people with the skills to lead, and that the talents of these people lie elsewhere. Others argue that many of these people do have the skills but are not stepping forward to accept leadership positions. I can not speak empirically to the first possibility. My observations, though, suggest the latter, and that a cultural reason might be partly responsible for their reticence.

            In raising the value of non-normative characteristics and behaviours, such as those often embodied by the core members, there is often a corollary movement down the value scale for more traditional gifts and skills. Although Vanier and other L’Arche elders never explicitly endorse this corollary devaluation, it is in some ways unavoidable as it is built into the ideology. For instance, a significant part of the training, practice and theology is dedicated to promoting the virtue of leading with your heart or feelings (as people with intellectual disabilities often tend to). It is not unimaginable then, that assistants read into this a sub-text which says that leading with the head or reason is considered sub-optimal in this sub-culture. Obviously assistants do not apply such ideas unquestioned to their whole lives. If the sub-cultural norms are strong enough, however, they may be more easily convinced to acquiesce and apply them within L’Arche.

            I want to be careful not to overstate this point because the effect is subtle. In fact, people do discuss their talents and skills and also apply them within. Still, in many situations, I observed reluctance on the part of assistants to claim talents and skills, or to take the initiative to put them to use. Moreover, the “leadership crisis” as the leaders of L’Arche named the problem in the 1998 Annual Report, is evidence that this issue is widespread. A psychiatrist, who has worked extensively with L’Arche assistants, speaks to this issue, although very tentatively given her ongoing relationship with their communities. She wrote that among skilled assistants in L’Arche there is:

… a reluctance to actively use this [prior] training and formal knowledge, … an individual and organizational ambivalence toward knowledge and/or professionalism ,… [and that] there seems to be a need to undervalue knowledge and gifts validly earned—as if this pointed to some higher spiritual state (Johnston 1987:8-9).

 

            Many long-term assistants, who are in positions of leadership, agree that this cultural perception is part of the leadership issue. Some feel that the perception stems from a flawed interpretation of the ideology, however. As one community leader, Sam, told me:

I suppose that somehow we [leaders] need to be more clear with people that the idea of valuing the weak does not mean we want everybody to be weak! It is sort of like ‘each gives according to his ability’ … You shouldn’t resent or dismiss those who can’t give in traditional ways, or think you are better than them, but you also aren’t supposed to feel badly that you can lead, or organize outings, or pay the phone bill. You see what I mean? Assistants have to be encouraged more in sharing their gifts … Some do seem very reluctant to do so.

 

            Sam’s position seems reasonable. Yet, assistants commonly misunderstand this message. It may, therefore, behoove the communities to begin a dialogue concerning a more appropriate interpretation of the message around skills and leadership in order to allay people’s reticence.


6.3.3 Caring for caregivers

 

            I have outlined many ways, including the previous two strategies, in which the L’Arche philosophy and model of care are counter-cultural. In this section, I focus on a general strategy that L’Arche has developed to help support the assistants to live this atypical lifestyle. L’Arche’s third key strategy in the enculturation of its caregivers is the creation of a community of support. The community of moral support acts as a space in which people can develop, test, strengthen and question their nascent counter-cultural moral and political beliefs. After discussing the merits of this strategy, I identify two side-effects it can beget; first, assistants who occasionally get stuck in the supportiveness and second, tension from the sometimes conflicting needs and rights of caregivers and people with intellectual disabilities (see also Spink 1990:185).

            The definition of  “community” that I rely on comes from a classic ethnography of community and relational supports in the United States:

Community is a term that is used very loosely by Americans today. We [the research team] use it in a strong sense: a community is a group of people who are socially interdependent, who participate together in discussion and decision-making, and who share certain practices that both define the community and are nurtured by it. Such a community is not quickly formed. It almost always has a history and so is also a community of memory, defined in part by its past and its memory of its past (Bellah and et al. 1985:333).

 

            Several other authors have useful reflections on community that add to Bellah’s definition, including a sense of belonging and being important to each other (McMillan and Chavis 1986:11) (Bazinet 1995:19), and normalizing or legitimising the norms of your group (Kingfisher 1996:43) (Fraser 1994). Caregivers have been shown to require emotional, financial and respite support from a “community of concern” (Benner 1994:43; Kittay 1999), and the relational aspects of caring practices are now being studied and revalorized (Phillips 1994:10).

Some argue that since relationships between caregivers or typical people and people with intellectual disabilities are uncommon, there are extra pressures on such relations. A “community of resistance” can help; it is a “group of people who, among other shared interests, recognize the negative effects of common beliefs and practices on their friendships and their friends and support one another to get on with their lives” (O'Brien and O'Brien 1993:34-6). While a community of resistance also helps to contain and subvert the larger pain of stigma, they caution that it cannot remove the pain or fix everything (ibid.:35). Similarly, some anthropologists argue that by participating in “cultures of resistance,” people contribute to future possibilities for structural change (Kingfisher 1996:161; Ong 1991:300), but also, importantly, engender “a new sense of self” and alter everyday attitudes, even if they do not always achieve broader political change (Ong 1991:304-5).

Establishing the need for support

            L’Arche assistants need a supportive community because what they do is counter-cultural (Bazinet 1995:15) and because their lifestyle is intrinsically demanding physically, mentally and emotionally. While I discuss such constraints in chapters four and five, I want to share some of the assistants’ thoughts in order to help specify the nature of the difficulties. I begin with two stories about the counter-cultural strains that impact the assistants, and which often come from external sources. Benjamin is an energetic director in Quebec, whose reflections on society generally, and on his own experience, are articulate.

     There are many reasons why it’s been harder for us to attract and keep assistants in the last ten years. The thing is, we’re not in the 70s anymore. Sociologically you see that at that time, [1960s] these ideas of resistance and poverty were all the rage, so people had models to follow. We don’t have that today. Plus religion is not seen as cool right now for a lot of people. I mean religion not spirituality. So L’Arche is at odds with those trends.

 

     After my time in L’Arche, France, I came back and started thinking about

my life differently. My friends had a hard time with my new ‘facts of life’ because

they weren’t in the same place, and they were all still thinking about money and

‘good’ jobs. When I told them I was going to turn down a great job offer at

a social agency to work for L’Arche when I graduate, they were all like;

‘Are you a weirdo or what?’ (laughs).

 

Renee has been involved with L’Arche in Nova Scotia as an assistant, a director, and most recently, as a board member for over twenty years. Her husband was socially involved, as well, but he worked primarily outside of L’Arche. They faced some difficulty in straddling the two worlds. In her words:

Ever since we got involved with L’Arche, we have faced people’s judgement about it. A lot of our friends are academics and they say ‘Oh it’s so airy fairy.’ People are anti-religious, or they’ve been hurt by the church, so they think it must be all fake and that we’re just projecting what we want on the core members. To be honest, this disharmony still bothers me. I like to fix things and I want people not to misunderstand, but I can’t explain it to them because they already think that I’m going to convert them! But in my prayer and my relationships in community, I come back to what is important—like the heart of John Frusciante[xxii] [core member] and I am happy to know him as a friend.

 

            There are also situations and working relations that arise from within L’Arche, in which assistants report feeling pushed to their personal limits and unable to resolve the conflict on their own. In my fieldwork, I observed many of the processes and mechanisms that L’Arche has put in place to deal with this. These seem quite effective given the complexity of most cases and the shortage of resources, which means that not every issue can be dealt with well. I discuss most of these mechanisms at length in Chapter 4, and in section 6.2.1 about spatio-temporal layout. The mechanisms include: accompaniment; small and large group meetings with time and space to share personal and professional concerns and grievances; short and long retreats to reflect and rejuvenate; regular team meetings where issues can be tabled; annual personnel reviews during which assistants are, ideally, helped to understand where they are doing well and where they need to make changes in order to stay well, inclusion in most significant decisions affecting their home and the community; support for them to seek outside counselling or medical help, as needed.

Particular scenarios of support

Each assistant has different things that they need to learn and areas where they need support. They bring some issues and needs with them when they come to L’Arche, and others emerge in the context of their particular home dynamic. Therefore, there is no formulaic approach to supporting people. In addition, people ask for support in different ways, if at all, while others resist help depending on where they are at in their capacity to face, and work through the issue. At this juncture, I want to share the thoughts of assistants who have found the support to be sufficient. Later, I share stories from those who have not. Renee explains that L’Arche has strategic reasons for supporting both the people with disabilities and the assistants. She says, “In the group homes where I used to work, they focused on the growth of the people with disabilities only, and not the staff’s growth at all. L’Arche uses the fact that we all have problems, make mistakes, and need to grow beyond them, to create common ground between everyone.” Benjamin explains that what he found most supportive was the guidance towards honesty and clarity with himself:

L’Arche was the first time in my life where I lived and worked in an environment that allowed me, or challenged me to ask myself real questions about my life. And that allowed me to find, slowly, answers that would help me understand my life and purpose. Why do I want to help others? Do I believe in God? Before L’Arche, nothing challenged me in that way. It was easy. And I guess I was ready for that… I liked how their culture was to look after people’s growth with accompaniment, retreats, training, praying in the home, or interactions with my head of house. All of these are part of the discourse of L’Arche and I learned from them.

 

            Anne-Marie was in an East coast L’Arche home and Shauna was in Ontario. Both were supported by the kind of guidance that Benjamin had, but for them the guidance was connected to particular situations of conflict in their L’Arche homes. Anne-Marie found the power dynamics between assistants and the head of her house hard to handle. Shauna went through an unhealthy period with a boyfriend and substance abuse that pulled her energy outside of the house and created tension. Although both explain that the support sometimes came in the form of hard truths about themselves that are difficult to swallow, in the end they could accept others’ guidance and grow from it, as they believed that it was given in a spirit of help, not judgement.

I stayed because of the core members, and because I felt at home here. And I stayed because it wasn’t easy. There were a lot of challenges and still are for me… But there are people I’ve lived with here who’ve cared for me enough to be honest with me; to tell me when they thought I wasn’t doing well, or to put challenges in front of me in a way that I felt okay with where the criticism was coming from … When you choose to live community, you are saying that you will try your best to be honest with yourself, and others, and try not to hurt people. I have been in meetings where very hard things have been said, but I think the most important thing if you’re going to say something, is to know exactly where it’s coming from. Why am I saying it? And if I can’t honestly say that it’s not personal, then I shut my mouth.  [Anne-Marie]

 

I can look back now and see how bad what I was doing was for me [boyfriend, parties]. I gained so much weight, I was always tired, and also I was incredibly distracted in the house. I was never fully there and people in the house would say to me: ‘You know it seems like you’re here physically but not mentally’. I was always waiting for the phone to ring and rushing the core members through their routines so I could go out for the night, or talk on the phone. It took me awhile because I am very stubborn, and there were a lot of angry words shared from both sides. But eventually I came around and I have to say looking back, it definitely helped that they kept at me about it. It felt like they cared about me, even when I was like—screw you, I don’t want your help! [Shauna]

 

            Some of the tough feedback that these assistants talk about is given in private meetings with a head of house or accompanier. As Anne-Marie explains, “In our community we assign an accompanier or friend for each new assistant; someone that has been here longer, and is good at listening to people. It is not like therapy or anything, it is more to have a confidential place that you can vent, or bring things you are struggling with, or questions. We think it helps to curb gossip too.” Shauna’s experience with her accompanier came at just the right time. She says, “She really took me under her wing when I was just feeling so crappy being there. I didn’t get along with the other assistants in my house then… She’s almost like another mom for me now.” Diane became an assistant after working for a few years and she appreciated the openness in the culture, to admitting when you needed help. In her words: “I’ve found it is a safe enough environment that if you come up against your limits, you are able to say so, and people will usually help you through and not make you feel like a failure. I think it is the core members that establish that tone, because they are not hiding their dependency or what they can’t do… Most of them anyway.”

            It is also important to note that it is not just other assistants or leaders who provide the support that people need. Assistants sometimes seek spiritual assistance or therapeutic assistance from outside the community, and core members are often an immense emotional support to assistants when they experience rough periods. I provide more extensive examples of this in Chapter 7, where I show how assistants, for various reasons, often feel safer with core members, when they are being honest about their sadness. Other research has insightfully illustrated the psychological aspects of the healing and transforming nature of this relationship in L’Arche (Hyrniuk 2001). Adam, who has been a director in L’Arche for many years, describes the potential growth in relationships between core members and assistants as follows:

I think that when it happens well, and it doesn’t always, then the assistants get a taste of what it feels like to have an impact; that they can make a difference for someone. And when they experience how the core people want to trust them, I think it helps them trust themselves, too. Especially when you’re young and insecure—that fundamental trust is a very significant feeling.

 

The ethics of care and the deferral of needs

A rich literature on the ethics of care has developed in feminist philosophy. One concern that has been raised is the need to look at who is caring for the caregivers. The disability rights movement has accomplished substantial gains on behalf of people with intellectual disability, but these ethicists also draw attention to the vulnerability of the people who are direct caregivers as well (Tronto 1993; Phillips and Benner 1994; Kittay 1999). They argue that we all need a degree of care and the direct caregivers, who are predominantly low-skilled, low-paid and women (Braddock and Mitchell 1992; Ungerson 1999:589) can be particularly disadvantaged when they engage in formal caregiver relations with people who are dependent on them. As Kittay argues, such “dependency relations” often make the caregiver feel morally bound to defer her own needs in favour of her charge’s because the latter’s needs are more urgent (Kittay 1999:181). Over time, this deprives the caregiver of her own freedoms and time for self-care, which ultimately leaves her unable to be a good caregiver for others, let alone an active citizen (Kittay 1999:181). Such theories are supported by research that shows that caregivers for dependent populations tend to be devalued (Ginsburg 1989:79). One North American survey of direct care workers revealed them to be at high risk of exploitation by employers (agencies and individual clients) who regularly use guilt to push the workers beyond their contractual obligations (Ungerson 1999:595). The workers capitulate both because they care, and because they do not want to risk being fired.

The pressure to defer your own needs is a contentious issue for some people in L’Arche, and this is a leading reason why people leave earlier than they would like to. Long-term assistants who agree with the current L'Arche model talk about how important and rewarding it can be to experience putting your own needs aside in order to be of service to others. Several assistants shared compelling, and verified stories about how their most significant personal transformation [their phrase] occurred during periods where they were significantly short-staffed in a house, and they were really pushed to their limits. Some claim this even when the experience pushed them to the point of exhaustion and burnout. They do not argue that new people should be pushed that far, but they feel that if new people are not allowed/encouraged to test and explore their personal limits, they will not have the kind of stimulating experience that leads to radical change and commitment. Jack is a good example of a new assistant for whom that belief resonated. He stayed on as head of house for several extra months, even though he was struggling with it, because the community needed him. What follows is his explanation for staying during that period:

I usually go with whatever I feel like, but in the house you can’t always do that—You have to be there for people. You know there are times when you don’t want to be there or you’re feeling a little out of it… I realized that the way I was going to grow (knowing my nature) is through commitment to others; that it would draw the best out of me, and it has.

 

            A few long-term assistants, however, expressed degrees of concern about the long-term implications of encouraging new assistants to defer their own needs where, as they see it, L’Arche does not adequately value or support the assistants. These long-term assistants feel that the community sometimes takes advantage of the goodwill and idealism of assistants, and then, ironically, wonders why they do not stay longer. This concern touches on a larger question for any community of support: Who are you supporting? In other words, when caregivers’ and core members’ needs are in direct conflict, how does the ideology direct people to resolve the conflict? These are significant questions. Noel, a friend of the community and former assistant, is articulate (if bold) on the subject:

     It is always approved of if you put the needs of the community first. The individual [assistant] is not seen as having needs that are as important as the community… We say to new assistants—‘Here is the structure and schedule we propose. Put your needs aside for the year. ‘No you can’t go to the movies at night’, and so on. And then after that year, we ask them to stay! But they’ve gotten the message that we don’t really care about them having a life, we care about the core members’ lives, but for assistants, just give us your service.

 

     There are specific ways that L’Arche supports and not others. It is a bit like a relationship. When you start you are in a certain place, looking for certain things and that is good and it works well. But at a certain point, if you say, ‘Wait, I am more than this; I have discovered this new thing about myself and I want to explore that.’—Well then there’s trouble. If that thing doesn’t fit with their ideas, they act like it ruins the symbiosis.

 

The need and challenge of limits with an ideology of diversity

In the passage above, Noel speaks with intentional rhetoric to make his point. Even so, he indirectly names a key challenge for L’Arche. An intentional community, by definition, is about achieving particular intentions, necessarily to the exclusion of other, often equally worthy intentions. It simply cannot accommodate every different way that people would like to live in community or it would fall apart[xxiii]. Since L’Arche is centrally concerned with valuing diversity, it is in an unusual ideological bind—which of the assistants’ diverse needs, ideas and opinions can it address, and which must be put aside? How diverse is too diverse for one place? Difference, it would seem, has its limits, even in L’Arche. I interviewed several former assistants, and heard stories about many more, who were disappointed and hurt that they did not receive the kind of support that they anticipated when they presented their divergent ideas and/or needs to their communities. At the time, they felt that their treatment was fundamentally incongruent with L’Arche’s explicit ideological commitment to accepting people for who they are. Although in our interviews a few people still felt that their community should have accommodated them, most had come to terms with what had happened[xxiv]. Either way, all felt that the worst pain came from a sense of injustice at what they perceived to be a subjective process, lacking in clarity and directness.

            The organization’s inability to admit or address this discord seems to stem from a tacit, collective aversion and refusal to name the limits of their capacity, as a single organization, to accept everyone. It is as if they feel (fear) that to do so would discredit their ideology. The opposite is true. The L’Arche ideological commitment to acceptance of diversity does not specify that it must all be accomplished within its four walls. For a small organization, it already contains tremendous diversity, but it cannot, and should not, accommodate people and needs that undermine its fundamental values. That is not to say that the organization should stop listening when individuals raise tough, but important issues, nor should it be implied that L’Arche cannot accept suggestions or criticisms at all. L'Arche simply lacks a clear organizational statement about its real limits. This means that people who are not being supported to stay, or supported in the way that they expect, experience this as an intensely personal rejection, as opposed to simply a lack of fit. With a clear statement in hand, L’Arche will be able to provide assistants with an unambiguous rationale for any decisions to limit their engagement of discussion of other issues.

The side-effects of a supportive community

            The final problem, which I see as being created by the ideal of a strong community of support, is that some members of the community stop looking outward—beyond the limits of the L’Arche community—for places to direct their energy, ideas and knowledge. There are two elements to this problem. First, I noted earlier that helping people to feel safe and comfortable in L’Arche has sometimes meant that assistants become unable or unwilling to step out of that environment and take on new risks, relationships and interests, whether inside of or beyond their home and community (Johnston 1987:8). When a house assistant stops growing and accepting new challenges, they are often less welcoming of new people or other changes in the home. It can be very difficult to bring that assistant to a place of honesty about why they are not stepping up to new responsibility. Simone, a director, feels that if long-term assistants do not model this energy and risk-taking themselves, they can not expect to inspire transformation in new assistants. Sara, a long-term staff member made this insightful observation:

Watching assistants over the years, I see that when you come to L’Arche, your horizons go ‘whooosh!’ [widening gesture], and you are way out there, and your tunnel vision is expanded and you see everybody and everything in a totally different light. But a lot of times, you stay on and your vision starts to do this [narrowing gesture], and then you only see the L’Arche point of view. The philosophy blows you out of the water when you start, but I think after awhile you have to find other ways to keep broadening your horizons.

 

The second concern that arises when assistants feel reluctant to venture outwards is that the radical aims of the mission, to seek to change the conditions of oppression for people with disability, are not transmitted to the larger, non-L’Arche community. If an assistant’s energy is all directed within L’Arche, they will almost certainly lose interest in the externally focused, radical socio-political aims of L’Arche that seek to change the conditions of oppression for people with disability. In her biography of Vanier, Spink briefly suggests that L’Arche has been criticized for being too personalist and conservative, and for its focus on individuals, as if change in social structure were out of reach (Spink 1990:185). Furthermore, if the assistants stop looking outside of L’Arche, they forgo the benefits of understanding their work within a broader context. Several assistants, and more than one board member whom I interviewed, noted that although they support L’Arche 100%, they felt that many assistants became too removed from “real life.” One board member, Sunil, was disheartened because he felt that L’Arche assistants sought assistance from the local community and neighbours but rarely offered reciprocal support for local community projects to help others.

            There were three key points in this section on the creation of a community of support. First, to ensure the long-term success of L’Arche, the agency should consider that support of its assistants is, in fact, an aspect of their mission; one that is secondary to, but necessary for, supporting the well-being of core members. Assistants are the single most important and expensive operating resource in a direct care organization. Therefore, it makes sense to invest in them, aside from being a progressive ethical decision. Still, L’Arche needs to invest energy into clarifying what kind of support they want and are able to give to assistants, in order to mitigate the anxiety and suffering of those assistants who are not supported to stay, and those who are still there and contemplating their future with L’Arche.

6.4 Conclusion

 

Findings in this chapter relate to the main question of the thesis: how to motivate and enable assistants to reproduce the radical L'Arche ethic of caregiving. I named five key elements of the ideology and process of enculturation in order to illuminate both their positive outcomes and unintentional, sometimes harmful side-effects. While the ideals are important, the willingness and ability of direct caregivers to enact them was shown to be as vital to successful implementation. New approaches to care often neglect to address ways in which their goals for improving the lives of clients often involve demands of caregivers which are in direct conflict with the caregivers’ own needs. It is important to provide caregivers with a reasonable ideological rationale for why they should enact the changes well, and then support the caregivers to sustain those changes even when challenging.

I described the structures and uses of space and time in L'Arche, to show how powerful it is when organizational ideals are reproduced in elements of daily life, but also how hard it is to execute. The discussion of redefining productivity to include time for relationships contributes to the importance of practice in assistants’ moral transformation. Informal story-telling among caregivers about their experiences with people with intellectual disabilities, is shown to produce a sense of commonality, and to humanize perceptions of disability through emphasis on each person’s particularity. The stories help to indirectly establish what counts in L'Arche, and helps assistants learn to recognize the unconventional gifts of people with intellectual disabilities. I also outlined the possibility of the L'Arche model of difference being translated into a more general case for the social value of diversity and inclusion of people with intellectual disabilities.

 

 

 

 

 

 

 

6.5 Endnotes

 



[i] I borrow the phrase “local, moral world” from Kleinman (1995a:96) to refer to a localized system of beliefs and behaviours in which participants develop a particular set of moral beliefs to suit their situation.

[ii] Other research has taken up this question (see for example Pottie 2001), but confidential research done with core members exclusively, and in particular an attempt to compare the well-being of L’Arche core members with clients in other agencies would be valuable.

[iii] Cross-cultural research shows that this discomfort is not universal (Ingstad and Whyte 1995), suggesting that part of why it doesn’t feel natural for most Canadians, is that we have already been socialized with stereotypes that shroud intellectual impairments with stigma. How we experience them is thus not unmediated or natural, but is rather already laden with interpretation. L’Arche tries to replace that interpretive framework with a different one.

[iv] I am aware that “authenticity” is a controversial term in current anthropology; assistants used it frequently though, to imply narrowing the gap between their values/beliefs and actions.

[v] It is important to note that detecting their problems can be very difficult; Canadian research shows massive under-diagnosis of health issues like mental illness or depression in people with intellectual disabilities (Lunsky 2002).

[vi] An interpretive refusal (Ortner 1995: 180-90) occurs when one does not name all the parts of a cultural process, (here, teaching by both core members and assistants) for fear that doing so would discount the power of one’s desired message, (here, that core members can teach). I believe that naming both elements here, will in fact make that main message more believable to sceptics.

[vii] While Young’s aim is to show the questionable outcomes achieved through application of ideological techniques, my aim is to show L’Arche’s use of similar techniques but for positive outcomes. See Geertz (1973) regarding how ideology as a concept has been cast unnecessarily negatively in anthropology.

[viii] Ortner urges anthropologists not to “dissolve actors” into groups or read their actions as if they were solely motivated by a single goal like resistance; ethnographies should name the multiple projects and differences among group members and include it all in analyses (1995:176-7). Agency is “the capacity of social beings to interpret and morally evaluate their situation and to formulate projects to try to enact them.” (Ortner 1995:185)

[ix] After I had developed these four categories, I came across a reference in a series of lectures on narrative that suggests that the categories may be common: Fulford wrote that “Stories are how we explain, how we teach, how we entertain ourselves, and how we often do all three at once.” (1999:9)

[x] Bruner suggests that good storytellers know how to create interesting variations on the same old themes and thereby make us “consider afresh what before we took for granted” (1996:140).

[xi] Some people might feel that having assistants telling the core members’ stories smacks of paternalism or appropriation of voice. That interpretation is ungrounded for four reasons; we all tell stories about ourselves and others all the time and core members in L’Arche who can, tell their own stories, and are listened to. Second, in many cases the people there cannot tell their own story and so having the assistants perform this surrogate role is the only possibility. Third, power issues decline when the storyteller is engaged in the same life path, accountable and vulnerable to the consequences of telling the story inaccurately or dishonestly (Stoller 1994). Fourth, stories do not exist in a vacuum; assistants can test for viability of a story against the actions or silences that they observe in the core member in other settings.

[xii] Rieff is discussing what was Freud’s assertion (Freud 1960).

[xiii] This is a reconstruction of the conversation from memory, not a transcription

[xiv] Jackson (1995) links human fulfilment to feeling that what you say matters.

[xv] Unless the situation was potentially harmful, of course.

[xvi] I group their stories together because I feel that giving more particular details is potentially harmful.

[xvii] Productive: producing or having the power to produce; industrial output; yielding results. Fecund: greatly productive, fertile; fruitfulness. Fruitfulness: bearing fruit in abundance; productive or prolific.

[xviii] See Hyrniuk, M. (2001) for a more extensive review of the model (Erikson 1980).

[xix] This thought was inspired by a conversation on Wendell’s research with narratives of pain (2002).

[xx] But see Desjardins, M. (2000) for a strong alternative perspective.

[xxi] “God hath chosen the foolish things of the world to confound the wise; and God hath chosen the weak things of the world to confound the things that are mighty” St. Paul.

[xxii] Not his real name.

[xxiii] Vanier recognized the need for limits early when he had to turn away some needy people (see Ch. 4)

[xxiv] Most came to feel that either it was not a good fit, or that L’Arche simply was not organizationally well-equipped to deal with certain sensitive religious issues (e.g. divorce, pre-marital living arrangements, and homosexuality). This does not mean that L’Arche was right, just that people have moved on.