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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 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. 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. |