P. J. Cushing 2003

7.0 Negotiating Mutuality Across

Difference and Inequality

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 accessible, and vulnerable (Miller and Stiver 1991:3). In my fieldwork, I found that being open or accessible was instrumental in how quickly assistants learned to enjoy aspects of being with a core member.

Straight and on the left

Of course there are also people who never really make that transition, and I talk about them more in the final section on limits to mutuality. Some assistants are not ready or interested in the changes L’Arche prescribes, and some resist all or part of what they see as misleading or manipulative organizational beliefs. Usually, if assistants do not like it, they leave since there are not many ties holding them there, especially at the early stages. Further, there is a fairly wide range in how an assistant can interpret and live the organizational mission in the house. Some choose to lead a very relaxed life of hanging out in the house with core members, listening to music or television, and doing the basics. Others are more energetic in organizing outings or cooking special meals, and being involved in prayer groups or planning committees. I found no rigid formula for what made a good assistant, friend or leader. There seemed to be consensus that living in an intentional community required all sorts of people and that diverse styles and approaches made the whole thing more liveable (see also Vanier 1989:50-3).

Some regulation of how to “be with” core members obviously has to go on in order to ensure that assistants are working and living in a way that is respectful and reflects the philosophy of the value of diversity. The L’Arche didactic mechanisms tend to be indirect. In the Ottawa community, James, a long-term assistant from the Caribbean, asked me to set the table with Shelly, a new and non-verbal core member who was having trouble adjusting to the home, mainly because L’Arche was trying to reduce her sedatives dosage. She tended to shriek loudly when anyone talked to her, and was otherwise vocalizing or grumbling fairly constantly. Based on my initial impression, I was surprised that Shelly would be interested in, or capable of, this task and I said as much to James. His answer and comportment seemed designed to normalize the situation and encourage, or teach, me to do the same; to not let the screaming disable me from being able to see Shelly as a capable person.

“Oh, she’s fine—just ask her to come in and get the cutlery—she knows what to do.” Seeing my quizzical look, he laughed and offered indirect guidance; “Oh, it will be fun—she is a very creative table-setter.” In this way, he conveyed to me that, “yes, you are right in what you are thinking, that she can’t set a table normally, but you are wrong in thinking that that means she shouldn’t do it anyway”. In a subtle way, he was suggesting that I change the values or standards by which I assess table-setting away from the assumption that what is normal is right, to valuing the creativity or fun involved. As she moved around the table groaning, she would pause, possibly in consideration, and then lay each utensil down in a random (to me at least) position. At first I kept correcting her placement, and then, reflecting on what James said, I came to accept that people would find their forks and knives either way and I let go of the inconsequential expectation that forks should go straight and on the left.

Stories are made of the daily things that happen between assistants and core members, or even just in the attitudinal shift of an assistant, and these stories are passed around. Seth admits, though, that even after hearing many stories and instructions, it took him a while to slow down and see that “getting tasks done” was not the only goal or product of caring labour:

What impressed me most in L’Arche was the quality of relationships; to see people finding ways to celebrate and be happy in spite of so many impairments. I liked it, but, boy, it took me time to learn—sometimes I would rush through someone’s bath trying to be efficient, and people would say to me ‘Non, non, non—pas comme ca!’ ‘You must take your time; get the temperature right, make sure the towels are good, help the person to be ready for this because it is a vulnerable, intimate time so you must talk first to show respect.’ And really for awhile I thought—‘My God what is this place?’ But you know eventually I settled in and found there was a whole other world to discover.

You can learn to be with people through various shifts in how you think about things that they do, but those adjustments do not always work. For example, it was difficult to get used to Shelly’s screaming, which, in addition to being the result of reduced medication, seemed like a release of so much anguish. As Vanier says, when you open yourself to a person who has faced so much social rejection because of their condition, you can feel overwhelmed by the degree and urgency of their pain and needs. I have sketched here the process wherein assistants learn how to simply be with people, even when this creates tension. I further discuss how inequality affects these relations below in section 7.5 on power. First however, I give some examples of the way in which assistants feel that the people with disabilities that they live with are teachers for them because this also speaks to assistants’ sustained interest in the relations.

7.4.2 Lessons for life

Along with the process of learning to be with people, there are also lessons that come out of this culturally-framed, daily practice. These lessons help an assistant to be a better, more empathetic caregiver, and also to be a better person. As noted, it is common at L’Arche to say that the people with disabilities can be teachers—a notion that derives from the biblical lesson that “God chose those who are weak and foolish in the eyes of the world to confound the wise” (I Corinthians, 1:21). This idea is counter-intuitive for most people and even if they buy into the spiritual or moral ideal it represents, it is still hard to integrate into how you actually live and interact with people across difference and inequality. It is thus easy for stories about these lessons to seem like caricatures or even projections to people who have not experienced them. I want to tell two stories here in detail so the reader can see that who a person with intellectual disability is, or what he does or says, can truly be a pivotal lesson.

There are three key points to bear in mind here. First, the actions and choices of core members can be intentional, (e.g. Loretta’s hair style) or they can be involuntary and related to their conditions (e.g. Shelly’s screaming). The distinction is often impossible to ascertain unequivocally, but what can be said is that their intentions in most scenarios are related to their own desires, not to teaching the assistant a lesson. Still, by just being themselves, the core member’s “unapologetic vulnerability” can put an assistant in touch with negative feelings about their own weaknesses, and lack of self-acceptance (Frascetti 2001).

The second point follows, therefore, that when assistants at L’Arche say that a core member taught them something, they are not using “taught” in its traditional sense of intentional, directed instruction. They usually mean that they (assistants) chose to read a certain meaning or life-lesson into how the core member lives his life. As discussed, these constructed meanings are also encouraged and facilitated by the cultural beliefs and values promoted within L’Arche that revive the normally-forgotten gifts of people with disabilities.

Third and finally, the encounter(s) with the core member is not usually the only factor or influence on what the assistant learns. There is, in other words, no illusion of a single magic bolt of lightning. Usually a variety of experiences and reflections, alone or with accompaniment, have already transpired surrounding their question or personal issue. However, it is generally reported by assistants that there is something unique about the honesty, rawness, and distinctness in how people with intellectual disabilities act. This can heighten or clarify the message for an assistant in a way that a direct teaching rarely can. In other words, it is partly because the person with disabilities is not trying to teach or tell anyone how to be, that people feel more open to the message inherent in their example. When I shared this idea with Adrienne, a long-term assistant, she agreed, adding: “Core members don't set out to teach us—that is what makes it so accessible. It's free of condescension and expectation—it is not preached or lectured.  It is more like mirroring something to us about ourselves that often touches a deep place because it goes beyond the thinking process.” L’Arche leads the field in espousing the idea that people with disabilities are teachers and have gifts, but they are not alone in this belief. Research with parents of people with disabilities frequently indicates their role as teachers[xx] (Kittay 1999:181; Hauerwas 1982:56-7; Landsman 2001).

Early on, for example, I was mildly frustrated with Donna who seemed uncooperative to me during her hygiene routines. It was hard to ask her to explain what was wrong as she was non-verbal, and at the time, her other means of expression were not familiar or obvious to me. I shared this at a house assistants’ meeting hoping to elicit suggestions for how to get Donna to change her behaviour, an approach that seemed logical to me. Instead, my concern was met with their stories on learning to be “in sync” with her. While empathetic, they encouraged me to spend more energy on discerning what legitimate conditions or issues might be pushing her to respond like that, such as pain, illness, sadness, or if something in her routine was out of order, rather than “change her” per se. Other stories gently suggested ways to change the meaning (for me) from “non-compliance” to seeing how inspiring it was that in spite of the trauma and pain she had been through in her life, she continued to grapple with articulating and insisting on her desires. This traces how I learned through others’ external cues new ways to see Donna as an agent and teacher rather than an object of care. This viewpoint relies on me believing or choosing to accept the system of belief that constructs her that way, and on me relinquishing having total authority as caregiver.

Being able to find or see the gifts in these people and relations is a learned skill. In a general way it is akin to a decoding process where an assistant learns new grooves of understanding that can be applied to different interactions or people. But it is also highly particularistic and what one assistant learns from being around Donna might not be relevant or clear to someone else. Again this is why daily practice is so vital—it takes the idea out of the realm of cliché or truism and makes it accessible, polysemous, believable, and liveable. How someone understands the phrase “We are all broken” alters completely when he has to face his own limits or pain in the intensity of a relationship with someone who has faced similar issues but does not have the same means to mask or gloss over them as he does.

Jack came to L’Arche in his late thirties, with a strong background in various eastern philosophical beliefs and meditative practices. He knew something about these beliefs and practices was not working for him, but he was not sure what. Eventually, he said:

I admitted to myself that I can’t do this [life] on my own. There was real humility in that for me. You see with Buddhist meditation, or yoga, a lot of it is on your own. You are in a community, but you meditate alone and you have to … And being in L’Arche has just been incredible in terms of being with the core members and realizing that Joe, Eric, the guys I live with—they live with so many limitations and yet they find joy and are great to be with. I mean they can be miserable too but just—they appreciate the spirituality of living day to day. Jean talks about how we are all broken but up until recently I was like, ‘I’m not broken—I have these struggles but I will get over them and become actualized and all that.’ That was my paradigm for a long time. In some ways it is wonderful and I still like meditation, but it is very focused on the self. Coming here I guess I have a sense now that my journey is less about me alone and more about God and other people too.

Recognizing that relationships can be good and healthy parts of life and not just restrictions on one’s independence is a liberating lesson that many caregivers in L’Arche talk about. Theo explained to me that he thinks that growing up we all learn not to admit that we need other people because that is seen as a weakness. In trying to live through some leadership issues in his community in Nova Scotia, however, he was pushed to the point of “humility and learning to let go and learning that I can’t do it all, and I need to ask for help.” Direct care workers are exposed to relational needs in a way that reveals the contingency of the myth of hyper-individualism. As Theo put it: “People need people at least some of the time. I guess it is more poignant at L’Arche because there are people who could die if you don’t feed them, right? It’s very ‘in your face.’ But it isn’t just the case for them; I realized we all need each other.”

Adrienne discovered a similar lesson in her relationship with Rachel. In particular, she came to recognize general relational patterns she had developed which were stopping her from growing. Adrienne struggled for years to identify her own needs, and she felt that her sense of self was defined largely by helping others. While she knew that this did not feel nourishing, she was not sure how to change without feeling that she was letting others down or being selfish. While living with Rachel, a core member, who was going through some profound changes after leaving the institution (Mosteller 1996:40-49), Adrienne found the model she needed for how to help and to be helped in part by accepting her own limitations. Rachel’s gift was in how her persistent effort to overcome hardship and get what she needed could teach Adrienne and others that this was possible. Their friendship is an exemplary case of how asking for help (explicitly or implicitly) can itself be a relationship-building process (Pottie 2001) as Adrienne narrates below[xxi].

When Rachel first came to our house from the institution, she spent most of her time rocking and yelling and not allowing anyone to touch her. Her history of trauma seemed to have left her uncertain about who, if anyone, she could trust to take care of her needs and so she simply did not express them to anyone other than through resistance. She also had medical problems which had contributed to chronic undernourishment, lack of energy, and physical deformity. Over time in our home, we worked to figure out what supports she needed to grow, beginning with the necessary surgery for her to eat, and trying to provide her with the constant empathetic presence of others. Slowly it seemed that she began to trust that people could respect her needs. The first indications of this were the delight she took in eating more than liquids once this was made possible. This also gave her more energy and possibly confidence. Eventually in her mid-20s she learned to literally stand on her own and walk upright despite her major back problems!

This led to additional small, but significant efforts to express what she did or did not want. For example, while still somewhat guarded about the physical touch of others, she began leading people by the hand to the sink when she wanted a glass of water, or to pull them off of the couch when she wanted to sit there. Rachel’s courage and persistence continually impressed on me that it was really possible and good for someone to learn anew to identify her needs. It has taken years, but I am learning to find and value my needs amidst those of everyone around me and I often think of Rachel’s steps in that direction when I find my own faltering.

Rachel has ways of consoling and helping people out directly as well. Once, when I was hidden crying in a side room about an argument I’d had with another caregiver, Rachel came in, crawled up on the bed, put her arm around me and laughed. I was not used to letting other people help me or even see that I might need help, but for some reason I didn’t mind it coming from her. In fact, I was struck by how much better it made me feel. Her courage to reach out and accept her need for some support is my constant reminder of how much relationships help me too.

Daniel looks back on 15 years in L’Arche and the changes he has undertaken and been supported through. He talks candidly about a Catholic upbringing that left him with a great sense of the importance of service for others. Still, as he put it, there can be a risky corollary to giving to others; “I learned from the women in my family to do for others and not ask for things for yourself.” Looking back, he thinks that he probably hoped that living a life of service in L’Arche could somehow make up for (or hide) the other things in himself that he felt were not good enough or spiritual enough. A similar theme was present in the reflections of several assistants that I interviewed. The intensity and unavoidable intimacy of life in a small community, however, made it difficult to hide those things. That, combined with giving himself so wholly to serving others, pushed him to exhaustion[xxii]. As he tells below, the community was highly supportive, and certain core members were especially helpful in teaching Daniel to accept himself as he is.

The particular gift of many people with intellectual disabilities is that they are often irrepressibly themselves. Obviously this is more true when they are somewhere they feel it’s safe to be so… I lived with Marjorie, who had her share of issues, but she had spunk, and wit and she was charming in spades. It is hard to describe—she wasn’t given a lot to work with—but her family must have worked to make her feel special and that stayed with her—she loved to be special, like a grand dame of the stage. A friend of mine called her my Beatrice, as in Dante, because, in her insistence on her own importance and needs, she was a model for me[xxiii]. We [in L’Arche] need to talk more about the power of their individuality—of their just being themselves.

In the end, this is probably the biggest thing that the core members taught me—that I am okay the way I am. I don’t have to become a priest, or give so much that I don’t sleep to be loved in God’s eyes and by other people. And it is not just accepting yourself or tolerating your flaws—it is about celebrating yourself. I learned that while I could not be or do some things, I had many other gifts and the core members helped me see them and value them in myself by holding onto me and forgiving me when I got angry or tired out. That has also been affirmed in leadership responsibilities for me here. At the end of the day, they will always be handicapped and Jean says strongly that rather than being ashamed of their lack of ability, we need to create space to help them claim their gifts. Ironically, doing so is often healing for others too.

While self-acceptance can be an illusory or never-ending project, Daniel’s experience reflects how this balanced sense of self can emerge as a side-effect of loving and serving others (Vanier 1989:46). A degree of self-awareness and acceptance helps assistants to be well in caregiving or other relationships. Here we have looked at the opportunities created by L’Arche’s philosophical turn towards revalorizing difference. In the next section, I introduce some of the struggles that arise as both parties learn to negotiate within the ambiguity of caring in an inherently imbalanced power relationship.

7.5 Negotiating power in caregiving relations

The L’Arche vision of care creates a rich site for exploring how people negotiate caregiving relationships across significant personal and professional differences and power inequalities. The power asymmetries intrinsic to that dependency relationship influence the flavour and parameters of it. Still, the physical tasks of care are only part of what is happening and being exchanged between the dependency worker and her charges. Through negotiating this uncertain terrain in practice for over thirty years, L’Arche has found ways to encourage relational connections while acknowledging the terms and limits of the power differential that partially structures those relations.

One question that needs to be asked is, “What is at stake for the caregivers?” What do they stand to lose and gain by agreeing to be open to sharing power with their charges? To avoid idealizing mutuality or how it is engendered in L’Arche, it is important to speak of the insecurities and loss that can be part of the experience of care as mutuality for caregivers. For those positioned as more powerful in any relationship, mutuality clearly means giving up some control over the conditions and outcomes of care. Also at stake are unchallenged authority and autonomy in decisions, the efficiency and simplicity that were traditionally valued, the caregiver’s safe emotional distance from the deviance stigmas of illness, and any solid self-concept as the healer or hero that can inhere in traditional one-way care relations.

This approach to care replaces the one-way “power discourse in which one gives, helps, and does not learn from the other,” with an ideal of mutuality (Phillips and Benner 1994:ix). It thus requires certain risk and loss in return for uncertain gains. The gains are also different for each person, and are thus hard to generalize. The L’Arche philosophical and spiritual framework broadens the caregivers’ definition of professional and personal goals. Negotiating the inequality requires the powerful to share power and resist the asymmetrical, dichotomous roles that form the automatic framework within which such relations exist[xxiv]. Sharing power is a radical ideal in a field where elsewhere most workers are tacitly trained to value patient compliance over agency, independent thought or idiosyncratic behaviour in their charges. These relations symbolize an implicit commitment to shift the terms of power in caregiving (see also Taylor & Bogdan 1989).

Loretta now lives in L’Arche, but talks about control in the institution; “Sometimes I hit people because I was angry. I don't like the [institutional] staff tell me what to do sometimes. I stole because I feel angry. So the staff drag me in the room. I didn't like it.” The definition of control is subjective and variable, and assistants continually learn to monitor their assumptions about what is “best”, and how to support people to make decisions themselves. Vanier, says that at first he assumed that he knew what was best for the men:

I thought I had the right to tell Raphael and Philippe what to do… I didn’t ask their opinion about that [attending church] or anything else. It took time for me to understand that I had to listen more and that they had their own lives, their own expectations and their own desires (Vanier 1995:19).

7.5.1 Pro-active sharing of power

Assistants in L’Arche are encouraged to share power with the core members over decisions that involve or effect them, including house and community issues. Simone, who is now a director, talks about how this is much more complicated to do than it sounds. For two years, she and her husband lived in a L'Arche home with their newborn baby. One time, Simone had to go upstairs to do something while her baby slept downstairs. She asked Jane, a core member to let her know if the baby woke up, since Jane often helped out in this regard. But when Simone came back down, the baby was crying away and Jane was peacefully doing her crossword puzzle. While giving people responsibilities is a chance for them to grow and learn, it can also jeopardize safety so the caregiver must weigh these issues carefully. As Simone explains:

Many people with disabilities have been very protected and not given much opportunity to make mistakes. I realized that as long as an assistant was there, everybody [core members] held back. They didn’t answer the phone or manage the kitchen. So I felt that it was good sometimes for me to be in the background more so they could take more initiative. In so many ways you have to take leadership though, and so it’s a hard thing to take it when you need to but [at the same time] encourage them to take it too… Ideally, I think we should do the dishes and cooking and stuff together because it is for both of our lives. We’re learning more about this… We have put the skill emphasis somewhat differently than standard group homes. Their main thing is getting people life skills for independent living, whereas we also work on things like including people in decisions about community life, or supporting their spiritual life.

Simone’s story reveals the complicated path to balancing power-sharing and being responsible. It also raises the important point that the question of what aspects of their life people most desire power over is not self-evident or homogeneous. Skills leading toward independence may be desirable but so are opportunities for social contact and input into the workings of the home, the menu, or even how one’s birthday will be celebrated[xxv]. For another core member in Ottawa, Ian, the community felt that if he could learn how to use public transportation, it would increase the range of employment that he could seek. It would also provide him with a new measure of freedom and confidence to be responsible for getting to and from work himself. There were assistants who were very concerned about what could go wrong and if he could get hurt, as he had “never done that before”. Ian himself did not seem to feel strongly either way, but some other assistants felt that he was ready for this growth and that the risk would be good for him.

Eventually Ian decided that he would try and he did learn how to use it and started a better job as well. But one day he did not come home on time. As his friend and long-term assistant Calvin tells the story, the assistants were all worried, but eventually learned that Ian had simply missed his stop while watching the bustling crowd with interest. Calvin exclaims, “What better example is there of why we need to keep pushing ourselves to support our people in taking the risk to grow. We have to let go of control. Then you get this stuff like Ian out there enjoying himself, having an adventure, and being his own person. His life is so much fuller riding on public buses rather than in one of our vans every day.”

Ian and Simone’s stories echo my earlier description of the paradox of care at L’Arche in which assistants are asked to simultaneously accept people for who they are, and encourage them to develop to their full capacity[xxvi]. As outlined in section 4.4.2, these aims seem contradictory but can be jointly achieved if held in tension in practice. Long-term assistants in L’Arche would say that the first priority is that the core member, or the assistant for that matter, feels valued, accepted, and eventually loved for who he is, but that this should not be a womb to hide in but rather a strong centre from which to step out of and develop as an individual. There are power and control tropes in both scenarios. The accepting womb holds the danger of producing over-protective, controlling assistants, and the push for growth is perilous if it becomes so central that the person feels inadequate and devalued for who they are. I have two more examples that touch on these complications of power-sharing and interdependence in caregiving relations.

Loretta has lived in L’Arche for 18 years and over that time has been supported to move away from impulsive, angry reactions to things that hurt her feelings, towards trying to express why it hurt her to the person in terms that they can hear. This is still a challenge for her but she now talks in terms that reflect her sense of self-worth and dignity; “I like who I am as a woman. I'm smart. Good power I have. I don't want to be treated as a little girl.” Loretta is active and participates in many downtown activities like shopping and dancing. Her experiences though, are not always pleasant. When some kids insulted her in a park, she and Sandra, the assistant with her, talked through what to do together. Loretta explains:

Some kids called me retarded. I don't like people to call me that ’cause it hurts. I got me power there with me. Sandra [caregiver] was with me and we walked. I told Sandra I hate the kids calling me that name. I talked to Sandra about the kids. I cried. She helps me [with] my control. She asked to me that I stay calm. So I stay even. Then I talked to the kids. I told the kids, ‘Stop! My name is Loretta.’ And I shake hands. They apologized.

Sandra says:

At first Loretta wanted to ‘hit those kids in the face’. As we sat there talking it through on the bench though, she moved through her anger to a place that seemed to me to be beyond ‘letting it go’, a phrase she often uses to help her leave difficult things behind. The way that she gathered up her courage and risked further ridicule by going back to the kids and telling them that they had hurt her, made a lasting impression on me.

Sandra and Loretta were clearly negotiating power in the decisions of whether to go back and stand up to the teens, and how to do so. Sandra was worried about going back and said so to Loretta, but when Loretta said she was ready to stand alone, Sandra chose to stand back. Risking failure also brings the opportunity for success and the positive experience of actively making decisions. While power will inhere in any relationship, freedom can be measured by one’s ability to transgress the limits of the directives (Lamb 1995:452-55). Loretta demonstrates this freedom by choosing to go back and challenge the kids against the suggestion of Sandra.

More often, the negotiation of power-sharing transpires over much longer periods of time and in smaller, everyday kinds of choices. Often many people are involved in decisions that a core member is trying to make, which is a good check to ensure that no one person controls or decides for the core member, and also brings more wisdom to bear on the question. For example, around health issues, there is first the collective knowledge of the core member, the assistants and other core members in the home. In addition, they will consult appropriate external health care professionals like doctors, nurses, psychiatrists, physiotherapists, nutritionists and so on, as well as other long-term assistants who have lived with that person before and may have useful historical insight. Where verbal communication is limited, assistants and health professionals monitor the person’s behavioural and physiological responses to a given choice to see if it is acceptable to her.

One example of this group approach to sharing power voluntarily, happened in the case of Frank, a core member who was having challenges with getting to the toilet during the night. This process occurred over a year and I was impressed with how committed the team seemed to be to taking time to find a solution that worked for, and “honoured” Frank, rather than rushing to the “control option,” which would have saved them a lot of work. I was told that initially there were only occasional incidents and the nurse involved determined it was not treatable medically. In discussions with Frank, the assistants shared the options with him, which were either to wear adult protective briefs, or to be woken up for a bathroom trip at night if he felt the need. He chose the latter, which worked for awhile, but more often than not, he chose not to get up, even when it was necessary. His choices obviously resulted in significant extra clean-up work for the assistants he lived with, and they felt he was increasingly confused, embarrassed and anxious about it. But several discussions with him about getting up did not yield any change.

In the house meeting among these assistants that I observed, they talked together with the part-time community nurse and spent substantial time trying to understand what underlying feelings or stresses on Frank could possibly be contributing to the issue. They also addressed how to help him through changes in his life and work environment and proposed new solutions that reflected empathy with Frank. They supported each other to believe that continuing to work with Frank was still the right and plausible thing to do; that there were still avenues to explore before moving to the stage of requiring him to wear protective briefs at night. I do not know how this situation was eventually resolved, but the story is a clear example of discussions that I listened to in many L’Arche homes where the assistants were committed to finding ways to pro-actively share power and decision-making, even when it added to their own responsibilities, and even when the outcome of the process was not sure to yield a better or different solution. The process itself was seen as an outcome of care in that it yielded dignity and respect to Frank and allowed him the time and space to work towards a solution in the same way that any of us would.

7.5.2 Being forced to share or use power

How power is shared and used is not only in the hands of assistants in L’Arche. There are often instances in which a core member can force the assistant either to share power in a situation where the assistant did not intend to, or to use power to enforce a decision that the core member is resisting. L’Arche is able to rely primarily on a “soft approach” to authority and power (less regulation, medication and restraints) in large part because the people with disabilities who live there are generally content and cooperative. But not all people with disabilities who come are content or co-operative all or any of the time. Scenarios involving these people provide special insight for understanding how mutuality can work because they involve greater deliberation, frustration, confusion, and reflection on the assistants’ part about what a legitimate use or sharing of power is, and when they must draw the line for legal or personal reasons. I purposefully did not put these scenarios in the next section on “limits” to mutuality because in L’Arche, long-term assistants tend to view such conflictual scenarios as still having the potential to be relationship-building and mutually growthful when handled well, as discussed below.

Such conflicts of interest are usually found in the little ways in which many core members resist a decision that an assistant has made and is trying to enact or impose on them. The most common instances of this seem to occur around when to go to bed and when to get up for work or a day program. Some core members do both on a regular schedule and seem very comfortable with this routine or rhythm to their day as are most people who work full-time. It provides a sense of control and predictability. For some people with intellectual disabilities and/or mental illnesses, a break from routine can be quite disruptive and anxiety-provoking. Others are unhappy about it almost every day and refuse to get up on time, and complain once they are up, and generally give the assistant a very hard time about it. This forces the assistant to step out of the L’Arche cultural ideal role which attempts to strive for co-operation, understanding, and equality in decisions and to use his authority in the home to prod, convince, and argue with the person to get up.

Besides simply being tiring, this so-called non-compliant behaviour challenges the assistant’s self-concept as a friend, and reminds both parties of the inescapable power imbalance. Again, there is a particular, direct honesty in how people with intellectual disabilities act in the world. My interpretation of such commonplace acts of resistance or complaining is that, at some level, the core members are well aware of the ultimate, if tacit difference in authority, and more willing to admit it than the assistants who have more invested in trying to meet the L’Arche ideal of “sharing life with” as opposed to just caring for people. Indeed, the assistants are so committed to living that ideal, that I noted regular instances like this where the assistants would ultimately privilege the core member’s “right to choose” not to go to work or program. They did so even when that meant that they were then unable to attend assistant meetings or have their short afternoon break time because they had to stay at home with the core member.

While I did not think to directly ask assistants during fieldwork to say which sorts of relationships or which kinds of core members had taught them “the most,” I now suspect that for many assistants, the times or people they learned the most from were the ones who were difficult to get along with; relations that were intense and ridden with conflicts of power, authority, will, values, and/or desire. Ironically, the core members who are the easiest for you personally to get along with (and this is different for different people) are often not the ones from whom you learn the most. This is not always the case, but quite often, in interviews and in daily conversations, I found that people were most excited to tell me (or each other) stories about situations that involved more conflict, complete with the drama of disagreement or moral confusion, turning points, and resolutions. These stories are not often written about in L’Arche’s official literature, but I have a few stories to illustrate how fruitful this genre of conflict can be.

Sebastian was an older man who had been in Daybreak twelve years, but only after several decades in an institution that were filled with some painful experiences[xxvii]. While most people would agree that Sebastian loved the increased freedom and integration into the world that he got at L’Arche, there were still many ways in which he expressed anger and what was probably resentment at the years of forced custody. Sebastian had habits like swearing, tearing his clothes, and yelling at new assistants. But assistants and core members who had lived with him during his many years in L'Arche, cared about him deeply, and when he died the community came together in a colourful celebration of this rowdy character.

Many assistants talked about the intensity and frustration of trying to have a relationship with Sebastian and to co-operate with him since he often did not want to co-operate with them. It forced them to greater efforts of compassion and patience, and reflection on why he was how he was. Their efforts were aided by their understanding of the pain and abuse that he had suffered in institutions in the past, but also thwarted when he cursed them or refused to co-operate with them and insisted that another assistant help him with his routines, as if they were not good or trustworthy enough. A few assistants explained that through Sebastian they learned to speak their minds more honestly about what they need. Many were inspired that he still had so much chutzpah after the tough life that he had. Importantly, these life lessons derive directly from negative aspects of his impairments, not gifts that he had “in spite of” his impairments.

Some people with disabilities who went to live in L’Arche arrived as people with significant challenges around controlling their violence, anger, and need for affection. Their entry into L’Arche, a place that offers people greater freedom to decide how to be or behave, begins an unpredictable journey that can be overwhelming for them. The decisions they choose to make with this freedom are not always progressive and are sometimes harmful to themselves or others that they live with. Matthew is an assistant who has been in L’Arche 14 years and is a big, fun-loving, no-nonsense man. I talked about him at some length earlier in the chapter on motives as well. He told me a story that made me think about how active a role the core members play in determining how power is used and shared. It bears repeating at length. Matthew lived with Robert, a core member who had diabetes and was physically very fragile, but was in other ways very strong.

Robert would walk around the house as if he was king of the world—he had an air, a grace… an integrity that made you respect him for who he was even when he was driving you nuts. Well, as an assistant you have a lot of power, you earn that. But Rob had a way of just turning that upside down. For example, in hygiene. He just hated washing his hair but it would get to the point that you would have to make him, because you couldn’t have him looking like that in public... people would not welcome him looking like that. He’d make a huge fuss and we’d fight the whole time I was washing his stupid hair, and it made me feel like a huge ogre for making him do it. But then I’d wrap the towel around his head and then he’d walk back down the corridor with this little smile as if to say ‘Didn’t I put you through shit!’ He would get me every time! …

But I felt that act, that departing smirk, was a great act of forgiveness in a way… as if he was letting me know that he knew that this was a game and he understood why I had to do that, and that I shouldn’t take it so seriously or feel badly.

Matthew shows here how this fragile, handicapped man could invert the normative power imbalance between them, both through his resistance, and his forgiveness, which he seemed to know that Matthew wanted. It is a good example of how we all have both the patient and the healer within us, and how a healer does well not to put so much distance between him and the patient so that he forgets that the patient is not helpless, and the healer is not devoid of needs (Guggenbuhl-Craig 1971:16-20, and 78; Steinhoffsmith 1999:75). Robert forced Matthew both to share power with him (by deferring his hair-washings) and to use his power of authority when he did not feel comfortable to (wash the hair). It is clear that out of these struggles Matthew was growing in how he understood and reflected on the meaning of their conflicts and their relationship simply as people, beyond the normative caregiving structure that was imposed on them by the situation. He had to consider deeply on what grounds he could “make” Robert wash his hair and whether he was indeed acting in a way that exhibited caring for Robert and Robert’s interests.

He also talks about the capacity that Robert had to call people to prayer, even when they were rushed and even when, a year later, he experienced kidney failure. “His prayer was really putting me in touch with my own need for prayer. And my need to slow down and take time with my prayer.” Their struggles continued, and fed their close connection but Matthew feels that Robert’s real gift to him came in the final days of his life.

With my background and all, I do not take compliments well. I was just the worst as a young man, I did terrible things. But I could charm my way out of any trouble—and so I guess I just figured that when other people said nice things, that they were like me … I can see now that I did not, [could not] trust what people said … And I don’t know, I wouldn’t have said this at the time, but I didn’t see myself as worthy of love or loving… There was a lot of self-doubt underneath although people would not have seen that, I don’t think. But this thing with Robert, well it broke that open—took me to the point of seeing myself as loveable.

Robert was dying. He was in and out of the hospital and we’d [assistants] do 8-10 hour ‘shifts’ there to keep him company. Anyway one night, days before his death, I was there twelve hours with him. It was a bit like being by the ocean, in that I found a sense of solitude beside him that didn’t bother me. Still, between that and all the rest, [at the house] I was exhausted. He was in and out of sleep and kept waking up seeing me there. [Then he just] turned to me and said ‘Baphew, Go home now.’ (that’s what he called me), and I said ‘No mate, it’s okay, I’m here for you.’ And we argued back and forth and then he said to me; ‘It’s okay Baphew, I love you.’ This just blew me apart. I’m with this man who is my age, and he is dying and somehow he picked up on something that I didn’t.

Again, it’s like he was forgiving me for all our arguments and conflicts, saying I’m loved anyway… See, I could take that on board coming from Robert—it was so pure and raw- just no agenda. I could believe that he meant it … in a way that I never had before. And my students did- looking back I can see that… but I never took it on board… But there was more too—this transformed me because it made me recognise how important it was to tell people I was close to, how I felt for them, and I did. It opened up possibilities in my relationships that I can’t even express to you. [xxviii]

7.6 Conclusion: The limits of mutuality at L’Arche

Aside from the way in which striving for mutuality can produce fruitful conflicts to be resolved, there are also times when it must be admitted that mutuality has limits for one reason or another. It can be a particular response to the professional power imbalance, the fact that some things are just about dependency and not mutual or particularly meaningful. Sometimes an assistant is tired or out of sorts and only wants to undertake the task, not the relational connection. And sometimes a core member and assistant simply do not get along. There are, alas, limits to our capacity for acceptance of difference, and it is important to name those times as such, rather than forcing the issue; forced mutuality is, of course, not mutuality at all. None of us likes every person we meet or work with and the same is true for caregivers. Rather than making blanket statements like “I love the core members”, assistants at L’Arche talk almost exclusively in particular terms, about particular people whom they enjoy, conflict with, learn from, or really do not get along with. While a decent level of professional and moral acceptance must prevail in all interactions, an assistant who is relationally engaged, is bound to like some people better than others. In other words, caring as mutuality does not mean that you have to like everybody equally.

L’Arche aims to transform or shape people’s hearts to be more open to relations across difference. While assistants regularly report success on that count to some degree, there is no guarantee that they will actually have such a relationship at L’Arche; their shift in attitude may blossom more fully elsewhere. For example, Angie says that former assistants tend to make very good parents. Reasons for not coming to mutuality at L’Arche vary. Some found themselves in a home where they did not get along with the other assistants. A few never got to the point of feeling that there was “room” for them on the proverbial stage when the core members in their home were already attached to or comfortable with existing assistants. Others do not stay long enough to find their place or to get past some of the normal awkwardness. Some people simply do not feel cut out for relations with people with intellectual disabilities.

Some folks that I interviewed suggested that there were also structural issues at L’Arche which prevented or at least slowed down the development of good relations. Kevin was frustrated with how many times he had been asked to “say yes” to helping with a need in another house, which meant that he had to move homes and start over again, leaving behind incipient relationships. L’Arche Canada undertook two surveys in the last eight years, and in both cases, long-term assistants expressed concern that increasing bureaucratization and government administrative requirements were encroaching on the time they could spend being with core members and building relations (Davis 1995; Lukeman 2001).

As has been noted earlier, some aspects of the labour of care as practiced at L’Arche and elsewhere also need to be respected as plain old dependency or physical labour. In other words, part of giving someone a bath or making them dinner, is just that. Kittay argues that while it is important to talk about the reciprocity in the relations, this should not be used to further devalue the component that is labour and needs to be rewarded as such (1999:53-5). Kittay points to the moral pressures on caregivers to continually defer and subordinate their own needs in favour of meeting their charge’s (more urgent) needs (1999). This suggests some limits of mutuality and the need to recognize how these relations are irreducibly dualistic in nature, even when also mutually enriching.

Mutuality cannot be forced and there are core members who are only too aware that an assistant, however kind, fun and helpful, is still an assistant and thus not a “real friend” by some definitions. However much a researcher wants to make the definition of friends nuanced and inclusive of many configurations, people with intellectual disabilities generally see things like this in more plain terms. Sebastian, who spent decades in an institution, never rescinded his incoming understanding that caregivers belong in a particular category in relation to him. Even though he had good relations with several assistants, most people who knew him well told me that he drew a clear distinction between assistant-friends and outsider-friends, with the latter having ascendancy. Raoul and other assistants’ working theory was that Sebastian was frustrated and embarrassed by his own need to depend on assistants and so for him there was freedom, or different possibilities, around people who did not look after those aspects of his life.

There are people who feel uneasy about how L’Arche advocates and interprets relations between people with intellectual disabilities and their caregivers. Noel, from Quebec, said that it was ironic how the core members, who are often focused on survival, came to the relationships with an honesty of need (even if grudgingly so) that assistants often do not or can not. He felt that assistants sometimes want to overlook that reality because they want to believe there is a friendship there that is not just about the labour of care. Billy, a director out West, felt that as an organization, L’Arche makes an unverified assumption that the core members want relationships with assistants and see them as more than just caregivers. His community asked a handful of core members about this informally, and were surprised to find that several of the core members did not see assistants as more than caregivers.

These concerns are all legitimate and could usefully be investigated further, but it would be wrong to conclude that these cautionary notes imply a need to end all attempts at relationship. Given the paucity of opportunities for relationships of any sort for people with intellectual disabilities, disallowing them care relations would do more harm than good. Furthermore, core members are rarely passive victims of unwanted attention; many of them have effective means of resisting or avoiding people that they do not want to be with. L’Arche leadership are aware of the concern that exists in the assistants’ needs, or the “absent cry of the rich” and are working out how to mitigate any negative effect that that might have.

Although my research examines assistant-core member relations, other relationship dyads are also important for assistants in L’Arche. Relations with core members have certain limitations given the assistants’ inherent professional responsibilities, and the lack of shared experience in certain areas, which circumscribes some conversations. Assistants often talk about the need for other kinds of relationships, either with assistants or people outside of the community, to keep their perspective and not become overly identified with L’Arche.

7.7 Endnotes

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[i] Thanks to Carl MacMillan, a L’Arche director for our conversation on this.

[ii] Pottie noted here that assistants themselves can tire of the radical agenda at times and pull back. People have multiple projects and desires, which shift in importance (Tsing 1994; Ortner 1995).

[iii] Although my impression is that core members valued relationships (see Chapter 2), I did not interview them directly. I now see this as a weakness with my research and I hope to do future research to correct for it. See Cushing & Lewis (2002) for an initial effort to incorporate their perspectives.

[iv] Research is needed on the challenges of assistant-assistant relations and on core members’ relations.

[v] “Care that is carried out without a sense of the real worth of the recipient is flawed in the most profound way. Such care can produce a sense of belittlement and, so, be destructive of the person toward whom it is directed.” (C. Taylor 1994:183).

[vi] This begs the question “What do core members think and feel about relationships with caregivers?”

[vii] These roles are not totalizing and research shows client agency and resistance (Friedson 1961).

[viii] Or in some cases to even be aware that such a script of role expectations exists.

[ix] Again, determining what the motive or agency is for a person with intellectual disability is a tricky business. Clearly, non-cooperation is not always intentional, but sometimes it is.

[x] It is also important to note that these relations occur within the web of relationships that makes up L’Arche communities and these provide another kind of support (Pottie 2001).

[xi] Again, as noted earlier, it is likely that we do have a natural capacity to relate to those who are different, but that we are socialized out of that capacity by the time we are adults like these caregivers.

[xii] Ortner (1984) cautions against this pitfall in discussions of practice.

[xiii] Of course books like Ong’s Spirits of Resistance and Capitalist Discipline (1987) show that for the people involved in mass production, detached simplification is not generally good either.

[xiv] In this history section, I use research that has been done with a variety of caregivers including direct care workers, doctors and nurses. I recognize that each of these careers involves very different training, experience and power, but the thread of the imbalanced organizational or systemic emphasis between caring and competence seems common throughout.

[xv] A pentimento is a canvas which has been painted over more than once but some of the paintings underneath show through. I borrow the metaphor from Rhodes (1993:131).

[xvi] The question of whether this kind of choice should even be made at the level of the (often uninformed, and always, initially shocked) individual is another major ethical and biological/evolutionary question. It also begs the obvious question of where will we (as a society) draw the “moral line” on what genetic disorders we deem okay (or not) to abort for as the capacity becomes available. Finally, given the increasing sophistication of how insurance companies discern between what “problems” they will and will not cover, I wonder whether health insurers might decide not to cover parents who “choose” to have a child (i.e. to not abort) that will invariably involve substantial additional health care costs/insurance payments.

[xvii] In most agencies the common expectation is that the people with intellectual disabilities will develop friends with “peers” (i.e. other people with disabilities), not staff.

[xviii] This is an edited version of a longer conversation but the phrasing is intact.

[xix] Loretta used to buy rings then decide shortly after that she did not like them, which became costly.

[xx] P.L.A.N. is an organization of parents and friends of people with intellectual disabilities separate from L’Arche which claims Vanier as their inspiration for an ideology and set of programs based on the belief that relationships with people with disabilities can enrich typical peoples’ lives (PLAN 2001).

[xxi] This passage has been edited for brevity but all ideas are Adrienne’s.

[xxii] For a psychological perspective on this kind of diminished ego experience in service, see Hyrniuk (2001) and Pottie (2001).

[xxiii] Daniel also notes that Marjorie’s confidence was double-edged. Sometimes she could be hurtful to her housemates. While that was not acceptable, her confidence still triggered his reflections.

[xxiv] Note that in the broader context of the work, caregivers themselves are often powerless in relation to their employers and are frequently underpaid (Kittay 1999:49; Braddock and Mitchell 1992).

[xxv] See also Stephenson and Coughlin (2001) where the aged’s main priority is not always independence.

[xxvi] This can also be a tension in regular relationships, but the power and authority dimension here adds a layer of complexity with who gets to make the decision.

[xxvii] Sebastian died in November 1999 while I was living in the community. Rest in Peace.

[xxviii] This facet of relations across inequality in caregiving could use more attention.