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P. J. Cushing 2003 7.0 Negotiating Mutuality Across 7.1 Introduction
All L’Arche assistants share
two things in common whether they stay or leave, and whether their experience
there was nourishing or difficult. The first is their shared experience of
learning to be more open to people who are very different from themselves, to
appreciate, and eventually like, the endearing qualities of people with
intellectual disabilities. The second is the near-universal skeptical response
that assistants get from people outside of the organization or field when they
say that they value and enjoy these relationships. It is very hard for people
to imagine how such a relationship could really be anything other than
charitable, professional or sustained by pity. People who visit the communities
or meet an assistant and core member out grocery shopping will tell the
assistant, “You are a saint,” or “I don’t know how you do it but God bless
you.” Assistants tend to bristle at such suggestions, and offer up some sort of
corrective like “No, no. Peter’s great; he
puts up with me!” or “Hey I wouldn’t do it if I didn’t enjoy it.” The assistants’ discomfort with
the dominant view of people with disabilities (reflected in people’s sympathy)
is at once evidence of their subjective transformation and their subsequent
naturalization of it. The capacity to get behind difference and disability to
know the person is learned not natural, or at least it must be relearned by adult assistants who grew
up learning standard stigmas about disability[i].
Their new subjectivity emerges not by chance, but from experiencing difference
framed within the powerful counter-cultural L’Arche ideology. This transition
often gives the assistants a sense of having grown. The tendency in L'Arche to
naturalize such relations can unfortunately rob them of that feeling and dampen
their initial sense of radicalism and social injustice, an otherwise potent
source of motivation[ii]. These
relationships are still unusual in
our world even if they are common in L’Arche, and this should not be forgotten. There are many important
configurations of relationships in these communities, but in this chapter, I
focus on the relations between caregivers and people with intellectual
disabilities[iii]. These
relations are at the core of the L’Arche mission and embody their key
spiritual, moral and political aims. In addition, such relations are not well
understood in the literature and form an illuminating case of working with
diversity[iv]
(see also Pottie 2001). I evoke a sense of assistants’ subjective transition in
openness towards these mutual relationships. While the instrumental value of
better caregiving relations to the
“client” has been well-established (Amado 1993a, Heal 1988, Phillips and Benner
1994, Steinhoffsmith 1999; Cushing and Lewis 2002), the value to the caregivers
is less thoroughly understood and I take that as my focus here. Whenever
I spend more than a few hours at the Shalom House, it is a sure thing that
Frank, one of the first core members in L’Arche in Canada, will gently take his
pipe out of his mouth, turn his steady, blue-eyed gaze towards me and ask,
“What does your father do, Pamela?” After considering my response for a moment,
he then asks me, “How long have we known each other?” No matter how many times
he asks me these questions, it still makes me smile. I do not know for sure
what it means to Frank to ask people these questions, but there is something
direct about them that make me, and many others, feel touched that he cares to
ask, and to remember. During dinner conversations where a question comes up
about a former assistant, people often turn to Frank for the answer.
Invariably, he recalls that name that no one else can remember. In
Chapters 5 and 6, I discussed assistants’ motives for being in L'Arche and the
process of enculturation for them into its alternative approach to care. These
represent the individual and organizational preconditions for what kind of
caregiving and relationships can transpire. Analyzing and illustrating what
actually happens is the subject of this chapter. I use ethnographic examples
from observation and interviews, to evoke a sense of what mutuality looks like
in the actual relationships possible in a framework of care. I outline the barriers
to these relationships and how people with disabilities help caregivers there
to overcome some of the barriers. There are many ways to define, conceive of, and assess the benefits of mutuality. There is some disagreement on whether it is desirable or ethical to promote mutuality between people who are different and unequal. I discuss formal and vernacular definitions of mutuality. Regarding why some caregivers (in and outside of L'Arche) want to have such uncommon relations, I share various ethnographic stories that illustrate their experiences and movements towards a new way of being and eventually to mutuality. Finally, I sketch the power dynamics inherent in these relationships, revealing the richness and challenges of negotiating mutuality in practice. 7.1.1 Themes
On a thematic level, this chapter is
about three things. Fundamentally it addresses the question of what to do with
difference. It does so by examining a sub-culture that revalorizes difference
and creates a viable rationale for a sociology of acceptance and diversity that
does not rely on the tired normative aphorisms about how people “really ought
to” behave. Second, the
stories in this chapter illustrate how contingent and false the
culturally-constructed stereotypes about people with intellectual disability
are. As I outlined in chapters three and four, many tales have been fashioned
about them that construct and then reproduce stigmatizing axes of difference,
which also function to keep them marginalized and physically separate. This ethnography
illuminates an alternative reality through discussing perceptions and relations
that can and have transpired under a different ideology. Finally,
this chapter is about the valuable contribution made by adding caring about through relationships to
the caring for process. This is not a
new assertion (see also French 1985) but I address two uncommon aspects through
this case. First, caring is often argued for on the grounds of its benefit to
clients (Taylor and Bogdan 1989:33; Amado 1988a, b; Phillips and Benner 1994)
while I emphasize how relationality also enhances the caregivers’ experience
and makes them better caregivers. Second, caring is often seen as a
complementary but separate, non-essential addition to the curing and technical
(scientific) competence (Good and Good 1993:91; Chambliss 1996; Phillips 1994).
My analysis however, suggests that while analytically distinguishable, in
practice, caring relations can be integral to treatment efficacy. As Bellah put
it, “The distinction needs to be drawn between caring as a sentimental
psychological attitude and caring as a responsible practice, aware of its own
limits” (1994:21). Although the L’Arche approach to relations is not a fully
realizable prototype for most mainstream settings, where caregivers do not live
in, and the caregivers and clients may not share common ground regarding
community and spirituality, (see also Pottie 2001) their experience offers a
challenge to dominant views of difference and the distancing practices they
sanction between the people with disability and their caregivers. 7.1.2 Ethics and interpretations
Three
points about the ethical delicacy of discussing stories that include people
with intellectual disabilities need to be reiterated. L’Arche increasingly
realizes the importance of protecting the privacy of people in their care.
Thus, while I try to keep each person’s unique character intact, I provide
minimal particulars of their medical and personal histories. This does not
compromise the value of the stories and reinforces the maxim that asks us to
see them as people first, not cases. Interpreting the meaning of non-verbal
people’s expressions is an uncertain and iterative process that a caregiver
learns over time and through multiple indicators (Tronto 1993:137; Kittay
1999:157). Several of these scenarios involve non-verbal or verbally-limited
people and I restrict interpretations of their motives to what has been
deciphered with relative certainty by the caregivers involved. 7.2 Defining mutuality in caregiving relations
“Normative mutuality is a relation in which all who participate bring
out the best in each other and help each other to live fully.” (Steinhoffsmith 1999:21) “When I say my people, I don’t mean that I am their shepherd and look
after them; I mean that they are written in me as I am in them; they are mine
as I am theirs. There is a solidarity between us.” (Vanier paraphrased from Spink
1990:151) Mutuality is a condition of mutual
respect, understanding and support that can be cultivated between two people in
a relationship. By definition mutual relations are fruitful or growthful for
both people. Mutuality can arise in a normal relationship between friends or
family, but can also be developed in relations with instrumental or political
dimensions, such as those between caregivers and their charges although these
present more layers of complexity. My discussion of mutuality is centrally
concerned with caregiving relationships where difference, inequality, and
professional ethics and obligations play complicating roles in how and why the
relation develops, and which usually require greater effort and nurturing to be
sustained. There
is no simple definition that adequately explains what is meant by mutuality in
caregiving at L’Arche, so I take the next few pages to disentangle the elements
of it. This basic explanation is illustrated with ethnographic examples in
sections 7.4, 7.5 and 7.6 of this chapter. I also address what motivates the
caregivers to be willing and able to enter into these intensive relationships
with people with disability who are, sadly, not normally considered worthy
candidates of such relational engagement with typical people. In L’Arche, mutuality is both general and particular. It is promoted
as a general way to approach all relationships (including caregiving) in a
spirit of openness and respect, especially in regards to reaching across
difference and inequality. General or ideological approaches, however, can lack
in depth and specificity. L’Arche leaders learned from experience and from
observing many new assistants, that mutuality is most effectively developed or
deepened in the particulars of specific relationships. In other words, mutual
care means caring for and about a specific, unique person rather than as a
category of client (see also Steinhoffsmith 1999:182-6). Charles Taylor concurs
and adds that good caregiving is motivated by respect for the particular
person, not just abstract ideals (1994:183; see also Phillips 1994:14-15;
Thomasma 1994)[v]. Clinical
experience in pastoral care convinced Steinhoffsmith that engaged,
co-operative, “interested” care as mutuality is more effective than
disinterested charity, which can end up condescending to the recipient
(1999:184). Caregiving relationships are
invariably occasioned by the clients’ need for assistance from the caregiver.
It must be acknowledged then that this is always initially and fundamentally an
instrumental relationship based on
the caregiver’s ability to meet the client’s needs. Their relation is thus
never free from the inherent imbalance of the instrumental motive, even though
their mutual feelings may grow to encompass much more than that. That inherent
imbalance has been the basis of debates in moral philosophy and practical
medical ethics about what kind of relationship is possible, and whether it is
even ethical or desirable to nurture one. The professional prohibition of
relationships between therapists and their clients is a common touchstone for
these debates. Hingsburger argues that when the caregiver, therapist or healer
initiates a relationship with a client, the client is put in a position where
they may feel unable to refuse the friendship for fear of jeopardizing the
quality of care they receive[vi]
(2001a). This is an important point and the clients’ freedom does need to be
protected. However, in the case of people with intellectual disability who are
so lacking in social contact, it is hard to see the logic in prohibiting
relationships with their caregivers as well. The cure would be iatrogenic; worse
than the risk or potential problem. It seems more appropriate to put checks and
systems in place that monitor whether these relations are voluntary and
healthy, as L’Arche does. Philosophers
who have postulated the conditions for “ideal friendships” have typically
argued that instrumentality or inequality preclude the possibility for true
mutuality (Aristotle 1976, Buber 1970, Lewis 1960). Feminist philosophers and
psychologists would argue that these so-called ideals are not natural but
rather rooted in particular, contingent values and a world-view salient for
[some] privileged white males, but not the majority of people (Gilligan 1982;
Jordan 1991). Those ideals assume that total autonomy (or lack of instrumental
motive) is possible in life, and desirable in relations, whereas theories of
the centrality and unavoidable place of relationships in our lives (Jordan
1997), and of our moral connectedness in social networks of relations (Kittay
1999; Chambliss 1996:2-4), significantly unsettle those assumptions.
Instrumental motives and interdependency need not be pathologized or treated as
sub-optimal ways of being. Finally, the model of mutuality at L’Arche is not
even focused on such “ideal relations” but rather on the process or movement
towards mutuality. The notion of mutuality in
relationships at L’Arche is concerned with the process or subjective shift of learning to be open to the value of
difference, more so than with its ideal end product, or outcome which is a mutual relationship across that difference.
Their books, sermons, and emphasis on daily practice all reiterate that the
movement towards openness to mutuality is an end in itself. Vanier often
emphasizes this daily openness as primary (Swanekamp 2000; Pottie 2001:30-32), whereas Martin
Buber (1970) emphasizes the “heightened moments” of connection possible in
mutuality. There are thus degrees of mutuality (Buber 1970:178; Berry 1985:41). Most
people at L’Arche would agree if heightened moments do emerge, they are usually
the fruit of the daily openness. Most stories about relationships
that assistants tell informally or formally, are not about extraordinary or
mystical events per se, but are rather ordinary interactions that are made more
meaningful through the assistants’ interpretation of them within the
L’Arche-Beatitudes paradigm of “the weak” as teachers of the “strong”. Since
most assistants are enculturated with Western values, such interpretations are
not immediately obvious or natural, but need to be re-learned. The
fourth element of this explanation of mutuality involves looking at the
embedded models of reciprocity. Mutuality and reciprocity
both refer to a flow of giving and receiving between parties and are often used
interchangeably. Some have argued that reciprocity as a model for social
relations can hurt marginal or disadvantaged people who cannot return what is
given “in kind” and are not then “due” anything (Gewirth 1996:77). Similarly,
Kittay is concerned with what counts as a “return” gesture since people with
intellectual disability “cannot reciprocate the care or concern the dependency
worker” gives them in an equivalent form (1999:54). Mutuality has been used to
refer to systems that attempt to include a wider range of gifts (often
intangible) in their notion of exchangeable units (SteinhoffSmith 1999; Carruth
1997). These analyses are progressive and thoughtful, but they still employ
exchange theory, although their concern is relationships, not things. After observing the interactions
between caregivers and people with disability at L’Arche, I argue that this
“exchange reciprocity” script also exists in how caregivers think and talk
about what they are doing, even though they are also engaged as employees.
Although the market or commodity economy legally defines these caregivers’
contractual relations, much of the discourse in L’Arche reflects notions of a
“gift economy” in how they talk about giving
time, love or extra effort for the core members over and above what might be
expected or required of them based on their financial compensation.
Interestingly, this discursive strategy included the paid administrative and
accounting staff, who are not “community members” but still felt that they
“gave” more than what was professionally required of them, out of their sense
of caring and morality. French and English assistants commonly say that an
attitude of mutuality involves gratuité,
which they define as “giving without counting the cost,” or “without
expectation of return”. While that is an admirable ideal, it seems inhumanly
angelic, and I did not observe that to be necessarily true. Given the low wages in this field of
work (Braddock and Mitchell 1992) and also in L’Arche, many caregivers across
the field resist (legitimately, I think) some requests by employers to engage
in often draining emotional labour on
top of the physical care that they are “being paid to do” (Rhodes 1993,
Chambliss 1996). So when they do give more, it is not surprising that this is
often accompanied by a tacit and even pre-cognitive or intuitive feeling of
wanting some kind of return for their effort, even if that is just
acknowledgement from the client or colleagues. At L’Arche for example, this is
currently manifesting in long-term assistants’ expectation to be financially
supported in retirement (Lukeman 2002). In
Parsons’ theory of the sick role, a patient could return the “favour” of the
privileges of temporal liminality that a healer affords him, by complying with
his role obligations to seek help, get better and be thankful (1951:436-7).
“Society is willing to legitimize sickness as long as one follows culturally
determined conventions of being ill, such as trying to regain health as quickly
as possible, or accepting medical help in overcoming the illness.”
(Christopoulos 2001:2)
This model is insightful in pointing out the roles and expectations by which
typical people are operating when temporary social disequilibrium is created as
a result of someone getting sick[vii].
Ideally, patients and healers
together restore equilibrium through compliance and treatment. However, when
the patient’s condition or illness is chronic—as in the case of the aged,
people with severe cognitive injuries and people with intellectual
disabilities—they are in a state of permanent liminality and more or less
permanent dependency which does not allow them to fulfill the sick role
expectations[viii]. The
tension arises from the unresolved imbalance created because while the
caregiver is constructing her narrative using a reciprocity script, the person
with intellectual disabilities is either not aware, cannot, or does not want to
fulfill their tacit role in that script[ix].
This imbalance is uncomfortable for
both parties over time and is why some corrective mechanism is needed. While
many caregivers feel resentment or burnout from the imbalance, the care
receiver can also experience his inability to give in particular ways as
painful, shameful and unbearable. The power and pleasures of the giver have been discussed by many
authors (Mauss 1954; Vanier 1998; Appadurai 1986:11-13; Silverstein 2000:141).
The impact of the imbalance on the receiver was addressed in a sermon by Joe
Vorstermans at a L’Arche retreat for new assistants. Joe urged them to look
beyond their initial concern with the value they
provide, to imagine how hard it must be for core members to feel that they
do not have much to give that anyone wants to receive. Joe suggested they
reflect on how the core members that they live with enrich their lives, or help
them, and to remember to name and acknowledge that “gift” to the person
directly[x]. This idea serves to resolve the
tension of imbalance for the caregiver in that she now has an immediate and
ongoing source of reciprocity in the gift of the core member’s life/presence.
In this way, L’Arche has effectively created a new unit of value by broadening the definition of value and what counts
as reciprocity to include “gifts of self” that do not require intentionality,
equivalence or transfer of ownership. The unit has value only because they have
invented meaning and a need for it, but this is also true of most value
assignments (Silverstein 2000). This echoes the notion of generalized
reciprocity in allowing for diverse sorts of returns, but differs in that the
expectation or timing of return is not deferred indefinitely (Sahlins
1972:185-195). So
this model does not go beyond exchange theory, but rather accommodates it along
with the clients’ unusual gifts. The fifth element of mutuality in
L’Arche flows from the previous element and that is the way in which mutuality
is in part a moral, spiritual and
political project of solidarity with those who are marginalized. In daily
life and interviews, L’Arche assistants described mutuality in caregiving as
aiming in part to reach across difference and inequality to know (connaître) and support the
disenfranchised person. It is a daily mode of relating to people that seeks to
find and cultivate common ground to acknowledge their shared humanity. Erickson
calls this sense of commonality “co-membership” (1975 in Kingfisher 1996:43). As
Adam, a community leader, put it, “Mutuality is about intentionally staying open to the diverse people that come into our
lives in community.” The subjective shift towards mutuality usually takes time
and effort to develop and sustain, and is more likely to last if the caregiver
and person with disability have access to proper emotional, spiritual or
psychological supports (Vanier 1989; see also Kittay 1999, O’Brien and O’Brien
1993, Taylor and Bogdan 1989, Pottie 2000). Empathic understanding across difference
is not natural for us[xi],
requires ongoing effort (Geertz 1994), and is the basis for good relations. Feminist psychologists such as Judith Jordan highlight how mutuality should mean respecting and supporting each other in and through differing oppressive conditions (1991:4). The myths of our “neutral” public sphere (Fraser 1994), and the fictional equality of the liberal political tradition force weak or marginal players to express and negotiate using the (hegemonic) terms of the dominant group without acknowledging the handicap that it puts on them ( Bishop 1994:21; Tannen 1994; Turkle 1995) . For
mutuality to be present, socially constructed inequities between people must
instead be recognized. A
commitment to recognizing and trying to diminish the systemic inequities of
difference is a pre-condition for a relationship between people separated by
difference, especially when they are operating within a normative framework,
such as a care-giving relationship, which normally reproduces structural
inequalities. The political project of solidarity
and mutual relations should not overshadow the fact that what the caregivers
are doing is still labour, and needs
to be credited as such. This work faces multiple devaluation by being
classified as women’s work, emotional work, “low-skilled” work and work for
people with intellectual disability—none of which have been traditionally well funded. The practice or labour is inherently
asymmetrical, and needs to be seen as such in order not to dismiss the critical
value of caregivers’ work (Kittay 1999:53-55). Thus, while “care as labour and
care as relationship,” are interwoven and mutually enriching (Tronto 1993:108;
see also Kittay 1999:155-7), it would be wrong to conflate the
relationships—the vehicles for potential mutuality—with the physical care,
which is not directly reciprocated. This point is elaborated in the final
section. 7.2.1 Caregivers’ motives for mutual relations
Having outlined the various elements
of mutuality in caregiving relations at L’Arche, I need to address the question
of why caregivers are motivated to enter into such relations. Some readers may
feel that the answers to this question are obvious, but in fact, research shows
that social stigma against people with intellectual disabilities makes it
difficult for them to make friends. The question is also salient given that
what is at stake for the caregiver is significant. Being engaged in these
relations involves power-sharing, openness and vulnerability and hence entails
risking certain loss for uncertain gains. In teaching pastoral care,
Steinhoffsmith discerned three traditional motives to “help” among pastoral
care workers: self-interest (income), self-esteem (status), and altruism (sense
of doing something of value by serving others) (1999:14). He says that since
these are rooted in a one-way conception of care, they often lead workers to
give until they burn out. By inviting people into relations of mutuality,
L’Arche is highlighting that care is two-way, or interdependent, and that both
people share responsibility for well-being or healing. I follow Ortner
(1984:151-3) and Geertz (1973) in assuming the need for multi-sided
explanations of complex motives like this that draw on both interest theory, (where the motive to
act is to further one’s own interests) and
strain theory, (the motive to act originates in some external source of
pressure or change that requires the subject to respond). I discuss initial
motives and motives that arise out of experience. Finally, lest the caregivers’
degree of agency seem too muscular, I discuss how the L’Arche culture at least
partially structures the emergence of these relations. Humanitarian
The humanitarian or moral motive,
which is part of most L’Arche assistants’ reasons for being there, contains both
strain and interest dimensions. Some argue that moral compassion and empathy
almost invariably arise out of being witness to others’ suffering (strain
theory) and compel caregivers into supportive relations with them
(Steinhoffsmith 1999; Kittay 1999). While I agree that people can be moved enough to enter into an
engaged relationship with a person with intellectual disability in this way, it
is clearly not a common occurrence, given the continuing low incidence of such
relations in our society. The objective reality of care, with its limited
resources, is also a powerful deterrent to any humanistic impulse the
caregivers might have (Pottie 2000:140; Chambliss 1996:2), and as I discuss
below, there are many other naturally occurring structural barriers to such
relations. Still, when someone begins with a
moral, spiritual or humanitarian project wherein she seeks to enter into
relationships with a marginalized person or group out of a desire to be in
solidarity with them against their social rejection, that is clearly a strong
motive for relational mutuality (Taylor and Bogdan 1989; O’Brien and O’Brien
1993). This project can be heightened through actual experience and interaction
with them. In that sense, the humanitarian motive is a response to conditions
that one finds unacceptable. It also reveals North Americans’ need for
relationships that feel more authentic and meaningful, and thus more personally
satisfying. Interestingly, Bellah found that Americans are “almost ashamed to
admit that they might do anything out of altruistic motives,” and so usually
explain their motives in terms of individual self-interest even where there are
other things at play (1994:23). Pleasure
It is important to name motives
which are not moral or serious in any sense but rather grow out of people
seeking experiences that are pleasurable (interest theory). When caregivers
have good, caring relations with their charges, they feel better about
themselves and are more satisfied with their work (Stephenson and Coughlin
2001). Caring for people is of course what many people who entered the field
wanted to do in the first place. But it is not just about caring. Angie, who
was an activist for other causes for years before joining L’Arche, said that in
her experience, “marginal and unusual people are simply more interesting to be
with than your average person.” That outlook predisposed her to be open to
people with intellectual disabilities who often say and do things that are
strikingly out of the norm and can be refreshing. Daniel, a director known for
his humour and his good relationships with core members, describes this as
their “wacky individuality.” His stories reflect how he enjoys being around
people who often have dramatic idiosyncrasies. It
is often people with intellectual disabilities’ incomplete grasp of typical
social norms that leads them to act more naturally, or as some would say, from
the heart, with less social inhibition than most people (Vanier 1989;
Wolfensberger 1988). In a characteristic inversion of dominant logic, Vanier
writes that rather than make people with intellectual disabilities change to be
“normal,” we should allow ourselves to be challenged by the dissonance
their difference creates in us (Vanier 1998 cited in Pottie 2000:19). Vanier
has an uncanny way of framing communitarian or civic goals in a way that
appeals to a modernist, individualist and even self-interested sentiment. In a
similar vein, Geertz wrote that while difficult and unnatural, growing beyond
ethnocentrism (or here, able-centrism) is desirable because it augments our
self-understanding by expanding our imaginations and mitigating our illusions
about how we fit into the world (1994:460-5). Sam,
an assistant said, “When I first got here, one of the things that blew my mind
was to sit there beside Deb, who gets her face right up close to yours, like
really challenging you. And I would stare right back at her and just wonder
what on earth she was thinking. It’s just amazing to be in a place that can
handle so much difference.” For most people though, appreciating difference is
“a skill we have to arduously learn, and having learnt it, always very
imperfectly, to work continuously to keep alive,” (Geertz 1994:466). Experience
There
are also tensions that arise out of the lived experience of direct care for
people with intellectual disabilities, which create a need to rebalance the
relationship in some way (strain theory). Mauss (1954) wrote about how the act
of giving ironically raises your status and accords you power, and new
assistants usually talk about how being able to meet the urgent needs of others
is a fulfilling experience. One director, Daniel, describes it as “a bodily
experience of your worth as a person; so it’s more than just an abstract
thought—it’s
something solid.” But this part of the
experience does not keep people engaged for long as it eventually feels too
one-sided and imbalanced for most people. That is where the concept of
non-traditional gifts of relations can be helpful. Jeff, a former assistant,
said that relationships with the core members had compelled him to admit his
own weaknesses, and need for others, surfacing how the “absent cry of the rich”
is part of why we seek relations. Indeed, Charles, an LTA, said that upon
seeing a video about L’Arche, he was struck by how absent that deep kind of
relationship was in his own life: “I thought to myself—I want to learn to love like that—and be loved like that. I realized how much
my heart needed to grow.” Trevor, a director, averred that good relationships
make the simple practices of caregiving meaningful and sustaining for
assistants. Just what we do
As noted, I do not wish to overplay
the degree of activeness[xii]
or deliberation of these caregivers in how I describe their motivations to
enter into relations with people with intellectual disabilities. While most
assistants do actively think about these things, the behavioural
environment and norms at L’Arche also influence them in imperceptible ways.
Their philosophical approach to care promotes relationality as the norm and as
such it becomes largely naturalized. It is, in other words, just what people do
in L'Arche. As I discussed in Chapter 6, new assistants are socialized into
this way of being through informal experience in practice and shared stories as
much as through personal reflection and wilful agency. Research in other
settings also suggests that good relationships can just happen in the right
environment (Taylor and Bogdan 1989). They can be intentional as noted above,
but are also part of the normal routine once you are there. 7.3
Historical attitudes to relationships and caregiving
Although feminist psychologists made
their first inroads in women-specific studies of relationships (Gilligan 1982),
there is increasing acceptance in the literature of the importance of
relationships in many aspects of both men’s and women’s lives (Miller 1991, 1993; Jordan 1990, 1991a, b).
In a caregiving setting, there is growing interest in the benefits and
challenges of improving client-healer relations from both the perspective of
the client and the healer (direct caregiver, doctor, nurse, rehabilitation
coordinator). Relational mutuality involves the client more and thus can
lighten the burden of care (Heller et al. 1997; Steinhoffsmith 1999).
It can increase caregiver satisfaction (Carruth 1997) and can provide the
opportunity for feedback in client responsiveness (Tronto 1993; Kittay 1999).
Nurses told Chambliss that having time for caring, inter-personal interactions
was what used to make the other hardships of their jobs bearable (1996). And
yet, in spite of all of these advantages, the relationship between client and
caregiver remains a controversial issue in health care, often for good reasons.
Here I outline the historical trajectory of this controversy, followed by barriers
to relationships in the care of people with intellectual disability. These
areas involve structural issues, persistent attitudes and stereotypes, and
finally the real, intrinsic challenges to such relations. 7.3.1 Impersonal but fair: a paradigm shift in caregiving
models
The
indifference and personal detachment characteristic of late modern or
post-modern citizens’ ideal self is by now a well-worn cliché. In a recent
article, Rimke provides evidence of this through his analysis of burgeoning
self-help literature in which, as a general rule, social relations and
interdependence are not just considered undesirable because they limit
“freedom,” but are often pathologized with labels like “co-dependency”
(2000:65-7). In effect, social relationships are medicalized and formalized
through the particular modern, liberal, political notion of the self as ideally
autonomous and free of ties (2000:65-7). It is against this backdrop that some
people are trying to bring the relational aspect back into caregiving. Feminist
psychologists and moral philosophers of care are pushing for recognition of the
powerful role of relationships. For example, Chambliss has shown that ethical
decisions in organizational settings are most often made by networks of related
people, not by the fabled individual “autonomous ethical actor” (1996:3-11). A
historical overview shows how we arrived where we are now. The professional but often
impersonal system that now dominates mainstream healthcare arose in part from
good intentions. While the older health care system was more personal and
relationship-oriented, Phillips argues that it too fostered various injustices:
sentimentality, pity-blame equations, disenfranchising certain people,
paternalism, controlling caretakers, caring motivated by guilt or shame, and
religious doctrines that sometimes promoted unhealthy submission and
self-sacrifice (Phillips 1994:2-6). These systemic problems all lead
practitioners and patients to want a system with less room for human bias;
something more “fair and just” that deals with everyone equally and protects
(inherently vulnerable) patients and caregivers from those issues (Phillips
1994:2-6). Those good intentions have
accomplished much; for example, Chambliss points out that with the new system a
criminal or a socially non-normative person likely gets better treatment as
staff try to treat people “fairly” (1996:128). But many argue now that the
changes went too far. Foucault (1973) showed the great increase in control we
accepted in return for improved scientific understanding of our illnesses, and
Goffman demonstrated that the iatrogenic effects of being in the impersonal
institutional environment could become more harmful than the original illness
(1963)! “Stripping [caregiving] relations of significance is only one radical
and risky way of guarding against the ravages of personal insecurity and
ambition.” (Phillips 1994:3) In
a reference to efficiency of mass production, Phillips suggests that “detached
simplification” can work for inanimate objects but not for caregiving of people
(1994:3-4)[xiii]. Other researchers have also discussed the
harmful effects of the professionally-sanctioned distancing and othering
strategies that health care staff often employ in their roles to avoid personal
relations with clients (Murphy 1990:117; Barham 1992:77). Most current
practitioners were trained to see caregiving as one-way only and to believe
that distance and objectivity are necessary preconditions of therapy. They are
wary of relations that cross that boundary (Benner 1994:58-9). As is often the
case, the extreme version of either system presents danger, be it the
distortions of partiality or the disheartening effect of depersonalization and
disengagement (Phillips 1994). Ideally, we need to find a way to evolve an
ideology and caregiving structure that encompasses both the fair,
depersonalized system and morally-based care (Phillips 1994:6). 7.3.2 The
structural privileging of technique over disposition: competence vs. caring The classic social science debate
over structure versus agency can be brought to bear on the issue of barriers
that prevent mutual relations between caregivers and the cared for. Jenkins
convincingly rejects structural determinism by showing how in Bourdieu’s model
(1977), actors can only be epiphenomena of structures, which provide no means
to explain change (Jenkins 1992:17). De Certeau (1984) has built a strong case
for agency in showing how people’s actual tactical moves are often subjectively
driven and unpredictable. Still, de Certeau believes that even as agents,
people act within structurally-limited parameters, or their objective reality.
As discussed earlier, de-institutionalization and community integration have
not led to much improvement in the relationships of people with intellectual
disabilities. So what structural factors are still inhibiting better relational
opportunities for them? One
reason for the lack of opportunities for better relations that emerges
frequently in the health care literature is that mainstream structures of care
have not been designed to provide the time or occasions to facilitate such
relationships (Lutfiya 1991; Tronto 1993; Pottie 2000:140). Resource shortages
and pressure for efficiency and productivity leave staff minimal discretionary
time to use for things like a caring conversation–considered “trivial” or at
best a secondary priority to the science and physical aspects of care (Good and
Good 1993). The chief of an emergency psychiatric unit told an ethnographer
that his advice to medical interns is clear: “The closer you are to the
patients, the harder it is to be good.” (Rhodes 1993:140) For this doctor,
“good” is defined out of necessity (limited beds) to mean a combination light
on compassion but heavy on speed and resourceful tactics for achieving
patient-transfers into non-emergency assignments (i.e. emptying beds) (Rhodes
1993, 1991). This is just one example of where the structure is reproduced (via
the doctor), in newly trained people to bypass relations in order to succeed
and survive. These values are exacerbated by resource scarcity and
bureaucratization at L’Arche and elsewhere. Medical historians point to the
discovery of microorganisms and bacterial causes of illnesses like
tuberculosis, cholera, and typhoid in the nineteenth century as how “excellence
in medicine became more closely associated with rigorous scientific knowledge
than empathic bedside manner,” (Lupton 1994:84 in McKay 2002; Christopoulos
2001). Anthropologists at Harvard Medical School discerned how the curriculum
enculturates students in a dual discourse: caring and competence, with the
latter privileged and fetishized while the former is effectively neglected
through simply not being taught (Good
and Good 1993:91-3). The Goods’ research shows that the production of medical
knowledge is biased a priori in a
school setting that equates science and competence with “real medicine” and
relegates humanistic and affective dimensions of care to the level of
afterthought (1993). Other
structural factors pull against relationships. Caregivers of all sorts[xiv]
are also, understandably, responsive to what they perceive to be what the
system rewards them personally for.
Research shows that many doctors consider themselves to be caring at heart, but
they feel frustrated at a care system that “discourages the development of a
close relationship between doctor and patient,” (Swaby-Ellis 1994:85; Chambliss
1996). Caregivers are consistently cited as feeling an irresolvable “conflict
between the vocation to care for persons and the industry of caring for
manageable parts,” (Phillips 1994:2). “Caregivers are rewarded for efficiency,
technical skill, and measurable results, while their concern, attentiveness,
and human engagement go unnoticed within their professional organizations and
institutions.” (Phillips 1994:1) Research reveals the unintended, yet logical
outcome of this narrow, if efficient, version of care: the majority of hospital
nurses could not recall any particular
stories about specific clients (my
emphasis); “They had become technicians doing tasks rather than practitioners
engaged in care and restoration.” (Benner 1994:58) 7.3.3 Persistent negative
attitudes towards difference and disability
While public and professional
attitudes towards people with intellectual and physical disabilities are not as
overtly derogatory as they were pre-1960s, there are indicators that
underneath, things are not that different. It seems that the prevailing
attitude continues to hold that relationships with people with intellectual
disabilities are likely motivated and sustained by either charity, sympathy, or
a desire to help. While we recall with disdain the mass popular support historically for eugenics in Canada,
and across Western societies (McLaren 1990:28, 79, 91), one does not have to
look far to find those ideas persisting in today’s supposedly more enlightened
times, somewhat like scratching the surface of a pentimento[xv].
Scholars like Hauerwas (1986) and Wendall Smith (2000) are concerned with the
prevalence of neo-eugenic logic that is not uncommon in pre-natal genetic
counseling, and bioethics reflections on who deserves to live. An extreme
example of this is controversial Cambridge press ethicist Peter Singer’s
“utilitarian” position that people with disabilities are not fully human, do not
deserve the social resources they require, and should all be aborted at
diagnosis or killed at birth (1979:127-38). It is not solely a problem of the
policy-makers, however, as many expecting parents, after an amniocentesis
revealing Down syndrome, hemophilia or other disabilities, are making the
individual choice to terminate the pregnancy (Jones 1998; Hauerwas 1982)[xvi].
Relationships and integration are inhibited by a fairly one-sided focus in popular and professional accounts on what people with intellectual disabilities can not do, and what support they need from society. This is often called a deficit or deviance model of difference (Pottie 2001:125-7; Taylor and Bogdan 1989). Such negative slants and stereotypes not surprisingly curtail typical people’s interest in having relationships with people with intellectual disabilities (Barham 1992; Taylor and Bogdan 1989; Bercovici 1983), not to mention exacerbate discrimination and their socio-economic isolation (Hanna and Ragovsky 1991; Lutfiya 1991). The socially
constructed stigma even inhibits some people with disabilities from wanting
relationships with each other[xvii]
(Epp 2000b; Hingsburger 2001a; Hauerwas 1986:171). An attitude shift
towards a greater consideration of the social benefits of enhanced social
diversity through inclusion and attending to different people’s gifts would
open up relational possibilities. A few self-advocates (Epp 2000a, b) and
researchers are beginning to point to this need (Amado 1988b:305; Benner 1994:59) and some parents of
people with disabilities have long recognized their value
(Hauerwas 1982). Others show that such relationships can happen even when one
is not necessarily looking to make that happen; for example, a relationship can
blossom when someone has frequent interaction with a person with disability
either through family, school, professional caregiving, or other forums (Taylor
and Bogdan 1989). This is probably the principal area in which L’Arche
philosophy can contribute to social change because it provides a concrete,
relevant and actionable system of beliefs and approaches to relations across
difference in practice, not just an ideal. 7.3.4 Intrinsic
difficulty of relations across difference and inequality
Any relationship across such
difference and inequality is bound to be challenging and laden with uncertainty
and both people need to be well supported to sustain it (Kittay 1999; Phillips
1994:8). It is important to try to understand and accept “the other”, and
fieldwork is a good place to learn that deep understanding usually entails
relationships. Typical people are often reticent to establish any close
relations with people with intellectual disabilities because of an intuition
that their weakness and helplessness will touch parts of their own experience
and be uncomfortable for us (Hauerwas 1986:175-6; Downey 1986:74; Vanier 1998).
This is often the case and should not be downplayed; as Wuthnow has argued,
helping others always requires time and energy, and usually entails sacrifices
by the caregiver (1991:105 in Bellah 1994:23). But as he says, that is also
what makes it special, not token in nature. In western cultures, relationships
are often seen as antithetical to freedom, as measured in units of individual
autonomy. Jackson writes that relationships and freedom are twin desires but
always in tension (1995:120-6). Caregiving relationships involve what Kittay
(1999) calls “moral dependency” and as such are scary for us to enter into
because the dependency threatens to “undermine radical independence and
self-determination,” or negative freedoms, which we have come to value
(Phillips and Benner 1994:ix; Vanier 1995; Pottie 2001). These deep cultural
values thus also work against the possibility of relationships across
difference and inequality. 7.4 Journey of discovery
The assistants embark on a journey
of sorts by opening themselves up to relationships of mutuality during their
time in L’Arche. This passage or transition towards a new maturity in their
moral, spiritual and social capacity to accept and live with difference is
vital for the organization and profound for most of the individuals. While
researchers have examined this transition (Hyrniuk 2001; Sumarah 1987), it is
my sense that many communities could profit from attending more closely to new
assistants who are undergoing this passage. While the long-term assistants
achieved clarity and articulated the lessons this experience offered, they seem
to have also experienced a sort of group amnesia about how awkward their
journey to get that clarity had been. Without meaning to, they seem to have
also forgotten how valuable it was for them to have that liminal time in which
to make mistakes while resisting and struggling with these counter-cultural
ideas; to learn through experience, rather than simply being told how to be. As
Theo told me, “I recall hearing Jean say that he gets worried about any L’Arche
community that doesn’t have any window-breakers!” Bourdieu
(1977) wrote that “Habitus is history turned into nature and denied as such.”
Novelist Kundera reflects on the tragedy of how humans forget history as our
individual memories fade (1986). In this section, I show how powerful yet
delicate this phase of learning is, in order to encourage L’Arche long-term
assistants to recall that all of this richness was a surprise to them, and to
those who started L’Arche originally (Mosteller 1996:8). Each journey, with all
its turbulence, is a special gift of consciousness and needs to be recognized,
rather than naturalized. Daily
practice is vital to this transitional experience. Ideologies have their
effect, but as the stories below demonstrate, deeper learning requires getting
your hands dirty. Charles explained that the intense ups and downs of living in
L’Arche were what finally made the gospel make sense for him: “See, I’d never actually popped the
hood and worked on the car; I had really only ever read the manual!” Theo had
studied and talked a lot about humanist love and justice, but he said he came
to L’Arche to see if he could actually live it. Bourdieu was sceptical about
whether you could really change people’s everyday dispositions, (what he called
hexis) which were so embedded as to
seem thoughtless for them (Jenkins 1992:75). However, he did
allow that people’s awareness of their naturalized dispositions would increase
if countered by a competing ideologies (Bourdieu 1977:164). Through
ideology and practice, L’Arche introduces a new ideology and thereby unmoors
and de-naturalizes these assistants’ typical habits of thought, giving them a
chance to adopt, adapt or reject new possibilities. Some leaders in L’Arche
feel that perhaps the practice-intensive model of having homes is no longer
viable for them due to resource constraints and that perhaps a new way of
executing the charism is needed. While alternative modes are no doubt possible,
my analysis shows that practice, or lived experience, was a crucial point of
differentiation between those who read about, and support L’Arche, and those
who live in it. Experience constructs our subjectivity (Scott 1992b:27). Many
board members, secretaries, and long-time friends of the community who strongly
support the mission readily grant that the growth they felt did not approach
the order of change experienced by most live-in assistants. Vanier believes that
the experience of commonality radically alters the meaning of caregiving: If one remains the helper, healer,
or comforter, the other must necessarily remain the one helped, the one sick, the one comforted… When
we discover the true gift of the one to be consoled, such barriers and
distinctions begin to fade away. (Vanier in Downey 1986:50, 62) Again, this subjective transition is not
only serious; there can be humour and delight for the assistant amidst the
moral-political shift. I asked Sam, 27, a physics graduate and artist, to be
more specific about what he meant by “seeing things differently.”[xviii]
Okay, I can feel my consciousness changing
being here with the guys. Like when I first met Deb, there was just awe, she
just seemed so different… Later I got a bit more comfortable and I could find
people’s oddities amusing—like just let it wash over me… Now, I could really
tell you that I am proud to go to church with Alfred [a handsome man with
profound physical impairments]. And I think it is good that we don’t just stay
at our own little chapel, because out there more people can be exposed to his
reality; and maybe they’ll feel uncomfortable when he yells, but that’s part of
life... And I love feeling uncomfortable and uncertain and questioning things.
I never really thought before about bringing a disabled man who screams to
church. So it makes me think more. Adam, a community leader, echoed this
sentiment when I asked him why he feels that connecting with people with
disability is different for him than being with typical friends: “Well, when
you sit down for dinner regularly with people who look at the world very
differently than you, it makes you feel awkward and uncomfortable because it is
not natural. But for me, and I’ve seen this in many assistants, it opens
something up inside you that you never knew you had. It makes life fuller.” 7.4.1 Learning to “be with”
“What counts as experience is neither
self-evident nor straight-forward; it is always contested, always therefore
political.” (Scott
1992b:37) And yet, we generally do not
question our normative classifications or categories of experience because we
do not always realize they are contingent and political until they are revealed
as such in contact with different classifications (Bourdieu 1977:164). So it is
that people who come to L’Arche are not instantly able to switch over to the
L’Arche system of values where “being with” people with disabilities is
considered as vital to care as “doing for” them (Vanier in Downey 1986:ix; Hauerwas
1986:177). People need to learn anew what counts as experience. Mathew, a
personnel director, told me, “L’Arche is a very human project—the simplest
point of L’Arche is to give love, and learn to be loved.” This need not be
complicated, but it does take time, and can entail hard truths of
self-awareness. Simone, a homes co-ordinator, attends closely to how assistants
are doing in the homes. She knows from years of living in L'Arche, that time
and a certain degree of strain and hardship give richness and meaning to
assistants’ time there, but she wants a balance. “Effective caregiving
requires… skill, knowledge and being in relation with others in ways that
foster mutuality, empowerment, and growth.” (Benner 1994:45). Predominant negative cultural attitudes
work against our collective ability to be witness to the intrinsic value of
people with intellectual disability. At L’Arche, assistants get to know people
with disabilities whose lives implicitly contest the discriminating, limiting
stereotypes applied to them. Research shows that in safe environments, people
with disabilities can reveal myriad gifts that family, caregivers and others
can grow to appreciate and learn from (Taylor and Bogdan 1989; Kittay 1999;
Wolfensberger 1988). Learning to “be with” people means that “Assistants
in L’Arche are not there to make people with disabilities somehow ‘normal’, but
to help them to grow towards maturity... to blossom forth into freedom, to
encourage her to grow and to accept herself as she is.” (Vanier 1998:27). In situations where there are substantial
actual and perceived differences and inequalities, there is a greater need to
be intentional in finding connections. Sometimes their unique difference can
baffle you, but then later make you smile. One night I was asked to make dinner
at Asha house with Sister Helena who lived in the Cape Breton community. I was
there early relaxing with core members Tom, Ashleigh and Belle who had come
home after work. I had only been in the community a week, so I just knew that
Tom was a gentle older Mi’kmaq man who admired Ghandi, and liked to sing along,
ear to the speaker, with country classics. While I was getting the salad ready,
Tom came out of the bathroom brushing his teeth aggressively. Suddenly, Tom was
holding his mouth and yelling in anguish “I’m going to die—die and go to
heaven—see my mom and dad.” And then he collapsed on the floor, continuing to
scream and yell. Since we had just met that week, I was unsure about how
seriously to take this scenario. Helena came in and all was resolved when she
introduced the new concern of transportation—how will he get to heaven? Tom
looked at her and said, as if it were obvious: “In an ambulance, eh? With Jim
Reeves and Princess Leah.” Catherine
is a dynamic, dramatic assistant who loves to laugh and point out the humour in
daily life. Now in her late 30s, she had found her experiences with family and
with different jobs very hierarchical. This left her tentative about standing
up for what she believed in. Her relationship with Loretta, a woman with
intellectual disability, whom she lived with and cared for, has altered how she
thinks about those choices. This reflects the idea that self-development is an
ongoing process of growth in, for, and through relationships, not something we
do in isolation (Jordan 1991:11). She and Loretta have fun together amidst
their differences. Catherine explains: Loretta is so on the edge. I love this
about her. In spite of often feeling hurt or marginalized, she doesn't
constantly try to fit in or apologize for who she is. She has a sense of
personal dignity despite living in a society that generally does not value her
existence. You could say that she’s stubborn or you could call it being
determined. When Loretta wanted to shave her hair off, I counseled her against it. I thought she’d change
her mind like with her rings[xix],
but I was also scared that it would further marginalize her. She told me,
‘Catherine, it is my head, my hair, my choice, my decision!’
In the end, she did it and it looked great because it was so Loretta. In our discussion, Catherine said that
over time, incidents like these helped her to listen more closely to who
Loretta was saying she was, but that it could still be hard to hold back when
Loretta or other core members wanted to do something that their caregivers did
not think was best for them. She talked about learning to recognize how often
no intervention is needed—just a willingness to accept people for who they are.
L’Arche culture shows people how to
recognize non-traditional gifts in people with disabilities. Obviously every
person has particular gifts, but people who have lived in L’Arche for years
also attest to certain commonalities: “People with intellectual disability
often possess qualities of welcome, wonderment, spontaneity and directness.
They are able to touch hearts and to call others to unity through their
simplicity and vulnerability.” (L'Arche 1993a) This does not mean that
people with intellectual disabilities are simple or homogeneous, as discussed
earlier. What constitutes someone’s gift at L’Arche
is not always something nice or positive, as I discuss below (Vanier
1989:50-3). While Loretta’s determination can be inspiring, it can also be
frustrating or tiring in other situations. But in both good and contentious
relationships, many caregivers believe that the core members have fewer masks,
hidden agendas, and rigidity around social etiquette and they usually deal with
issues in a refreshingly direct way. Many assistants report finding that this
creates a relational space that allows them to be themselves too. A former community leader and assistant
for 15 years, Lisa talked to me about how she got used to being around Mary, a
core member who has advanced Alzheimer’s disease. While growing up, Lisa strained
under high family expectations because of her talent in school, and was
reluctant to express parts of herself that did not fit the image people had of
her. Mary’s freedom to be herself surprised Lisa at first. “Mary is truly
herself in any situation. She lives life fully without having the means that
most of us rely on, since her vision and language are really limited. Like with
music; whenever the music starts, she is the first person up to dance
irrespective of where we are.” Lisa explained how she grew to really respect
how Mary seeks small, but important ways to hold onto autonomy in her life in
spite of being totally dependent in terms of personal and home care. “Mary can
be very clear about what she wants by using her body to demand respect around boundaries
and space. She likes to be nestled in on the couch with pillows around her and
the coffee table pulled up close to the couch. If you sit down beside her, she
may well get up and leave you sitting by yourself if she doesn’t feel like
being social!” I heard many
stories about how assistants had their biggest insights about the value of just
spending time being with people revealed in interactions with non-verbal
people. It is usually especially difficult to know what non-verbal members want
or feel, since their communications are more subtle and ambiguous. Sara, a
friend and employee of the community, told me about visiting her friend Brent
in the hospital and at home when he was dying. When she talked to him, she
would hold his hand but he was not very responsive and so she wondered “What
does he really think? He has no choice that I am here—he can’t tell me to go,
or not to wash his feet or whatever. But I would still communicate with him.”
On three different occasions, she said that when she told Brent that she was
going to go, he squeezed and held her hand. “To me that was a time to realize
he does know I am here and he is glad—that is what I think he was saying
there.” Another assistant had a similar experience with Alfred after Alfred’s mom, whom he did not see too much of, had paid a short visit and Alfred seemed to feel sad. The assistant, Raoul, sat with him quietly for a bit in his room and prayed. When he thought that Alfred wanted to be alone, he got up to leave. Alfred made a soft groaning noise, which Raoul interpreted as calling him back, as Alfred, who often screams, had been otherwise silent. This happened several times and afterwards Raoul said that it was the first time he really understood or believed the L’Arche cliché about the importance of just spending time with people. Both of these experiences support the idea that mutually growthful relationships develop from people being connected, emotionally accessi |