1 - Introduction

P. J. Cushing 2003

1.0 Introduction

“It is not a question of doing extraordinary things,

but rather of doing ordinary things with love.”

(Jean Vanier)

In an important but controversial discussion of the liberal democratic ideal, Habermas argues for the social value of full inclusion of all citizens and its potential realization in what he calls the bourgeois public sphere (1962). Ideally, this public sphere is the discursive arena in which differences among citizens are bracketed, so that the contributions of all actors are accepted and valued without them having to conform to dominant norms (Fraser 1994:74-7). Historians of sub-dominant groups like women, blacks, or the working class, however, show that in practice this ideal was rarely actualized. This is evident in the degree of conformity to normative styles that has been required of “others” if they wished to be heard or included (Fraser 1994:77; Tannen 1994; Cushing 1996). This expectation to conform is perhaps most evident in the case of colonized, indigenous people who, as a condition of their acceptance and even existence, have been pressured and coerced into “performing normal” as per the colonizers’ definitions (Povinelli 2001). While competition for power and resources is obviously at play in issues of inclusion and recognition, it has also been argued that cultural relativism, or a non-judgemental appreciation for people who are different from us, is neither natural nor easy for humans to achieve (Geertz 1994). Indeed, the beliefs and behaviours of others often partially conflict with our own or even call ours into question, creating discomfort, uncertainty, and sometimes hostility.

As an example, last year I took my seven-year-old cousin Vera to the cinema. As we headed in with our super-size popcorn, I noticed a man with significant physical impairments using a wheelchair manoeuvred by the breath of the user. Having seen this marvellous invention recently demonstrated elsewhere, I was excited to see someone making use of it and I wanted to share this discovery with Vera. Vera and I have a light-hearted friendship but when I suggested that we go over and ask the gentleman to show us how the chair worked, she balked: “I don’t want to,” she said. Undeterred, I started to move in that direction while assuring her that she would find the chair interesting. At this point she was visibly distressed. Her grip on my hand tightened, her body went stiff, and she pleaded, “Noooo- please – I don’t want to meet him!”

Whether you agree with my desire to ask this stranger about his wheelchair or not[i], the point is that I was struck by the degree of aversion, and even fear, expressed by this otherwise friendly and inquisitive child. This was perhaps not an ideal setting for an educational experience but there was more going on. Robert Murphy, an anthropologist who himself became profoundly impaired mid-career, vividly described similarly awkward and tense encounters in familiar settings with able-bodied adults, colleagues, and even old friends (1990:86). Murphy wrote candidly and bravely of the shame and embarrassment that even well-intentioned people can perpetuate by inadvertently reproducing pity and condescension in what they say, or do not say, to people with disabilities. Often, people simply do not know what to say or do.

1.1 The challenges of full inclusion

Biological, cognitive differences obviously limit the capacity of people with intellectual or developmental disabilities to participate in society. Such limits, however, are, in effect, exacerbated by the social rejection and stigma attached to the particular ways in which they are different; many of people with intellectual disabilities ways of being in the world transgress some of our culture’s core value ideals such as intelligence, independence, productivity, and beauty (Goffman 1963; Murphy 1990; Vanier 1995; Wolfensberger 1975). How we experience and interpret people who are different from us is, by and large, culturally mediated and not natural; experience is pre-conditioned by how we have been socialized to understand certain categories of people (J. Scott 1992a). Vera’s reaction can, I think, be fairly said to reflect a socially-learned predisposition. Contemporary socio-political movements and laws effectively advocate for the rights of people with intellectual disabilities to decent caregiving, equal opportunity, and physical inclusion in society. And yet, as Ignatieff writes, people cannot be legislated to care about others (1984). Without inspiring that caring or interest, however, genuine inclusion and integration can hardly be achieved. How might public interest and understanding of people who are different in devalued ways be encouraged?

L'Arche takes this question seriously. L’Arche was formed in the 1960s as an apostolic, intentional, faith community to create small group homes with people with intellectual disabilities, who would otherwise not have a home. L'Arche now has 131 affiliated communities with an average of three homes each, in 29 countries. One of the founders, Jean Vanier, believed that in order to work against the prevalent negative and dehumanizing stereotypes of people with intellectual disabilities, non-disabled people[ii] needed to have a chance to get to know them as individuals; thereby recognizing their shared humanity. In particular, he felt that in the safety of an accepting environment, the unconventional gifts[iii] of people with intellectual disabilities could be called forth. This would create a basis for mutually growthful relationships between them and those non-disabled people who came to live with, and care for them. But, as Vanier and others in the communities soon learned, it takes more than just putting people together to create a sense of commonality and engagement and a desire to understand one another (Vanier 95: 61). In order to facilitate these mutually growthful relationships, L'Arche evolved into a local moral community in which an alternative set of values and priorities came to prevail.

Recently, Vera and her family came with me to a large interfaith social gathering at L'Arche. Vera’s parents wanted her to have a positive experience among people with intellectual disabilities. Initially, Vera was somewhat overwhelmed by the diversity of this animated group and spent some time watching, wide-eyed, quiet, and nervous, as some of the people with disabilities spoke, gestured or behaved in ways that were quite unfamiliar to her. By the end of the night, however, she was visibly more at ease; less awed by the people around her, and had even spoken with a few people. Her family’s supportive presence was undoubtedly reassuring but her sense of comfort was likely also assisted by the normalizing effect of the L'Arche cultural environment where disability is treated as normal and unremarkable.

Many L'Arche assistants and volunteers shared similar stories with me about their own awkward transition when learning to be comfortable with people with disabilities. For some people, it was simply a matter of becoming accustomed to how people looked, or to their often unusual manners or behaviours. For others, there was something deeper that required a shift. In one community, an assistant named Lea told me that while she had always considered herself a caring, liberal-minded person, for years she felt extremely uncomfortable around the people with intellectual disabilities in two agencies at which she worked. She insisted that it was only once she got to L'Arche that she learned a new way of “seeing” and being with people with intellectual disabilities and was able to move past her negative feelings towards them. Lea attributed her shift in attitude to the atmosphere of normalcy in the L'Arche milieu in which people with intellectual disabilities, staff and volunteers interacted for work, social and spiritual activities. She said that this allowed her to see them as people who laugh and cry and who have needs similar to her own.

1.2 Failure to account for and deal with the challenges

Stories like these, of the awkwardness and tension that difference and disability occasion, are not uncommon. And yet, what is striking in the history of policies and programs for people with intellectual disabilities in the latter half of the twentieth century is the seeming refusal of scholars or leaders to design programs which recognize and deal with this reality. Since the late 1960s, there has been a liberalization of professionals’ attitudes towards people with intellectual disabilities. Bureaucrats and directors have executed the deinstitutionalization of residents with an apparent assumption that the residents’ physical placement in urban community environments would somehow transform the public attitude from fear and moral condescension into interest and welcome[iv]. In other words, they believed that if the residents are in society, they will become part of society. Most assessment research, however, flatly refutes this assumption. The impoverished social networks of people with intellectual disabilities are a strong indicator of lack of change in public attitudes towards them, and the failure to achieve full integration (Pottie 2001, Brown et al. 1997, O’Brien & O’Brien 1993, Desjardins 1998). In spite of important progress in formal procedural and contractual rights, people with intellectual disabilities remain misunderstood and under-appreciated by the public. In Chapter Three I assert the contingency of these stigmatized images by reviewing the stages of their cultural construction by directors, politicians and state planners who advocated moral hygiene and eugenics policies.

Canadian employees or volunteers, who want to work overseas, are often given cross-cultural training to familiarize them with the cultural values of the people at their destination. Similar training is also available to teach men and women how to co-operate across their broadly gendered approaches to problem-solving (Tannen 1994). This kind of orientation provides a framework within which the different beliefs and behaviours of “the other” are given meaning and logic, to help avoid negative responses to difference. People with intellectual disabilities constitute in some ways a particularized “cultural” group. Their cultural differences are also exacerbated by the inequality of capacity and regular asymmetry of power between them and non-disabled people. And yet, directors and direct caregivers are not given much formal orientation in the common ways and characteristics of people with intellectual disabilities and even less likely to be provided with a positive framework in which to appreciate the value of their differences in order to counter the default deficit model of disability (Taylor and Bogdan 1989).

At best, ideologies of normalization and rights theories suggest that people with intellectual disabilities are worthy of respect because they are on a continuum with us (i.e. almost normal) or simply because of the sanctity of all human life (i.e. in spite of abnormalities). But neither of these ideas, which dominate the contemporary disability field, offers caregivers, much less the public, a rationale for accepting or liking people with intellectual disabilities as they are; with their differences, not in spite of them. People are therefore left to learn from their direct experiences of people with intellectual disabilities. Since experience is culturally mediated, however, our interpretation of our experience tends simply to confirm and reproduce existing negative stereotypes. Thus, while new social movements for people with disabilities advocate for treating and thinking about them in new ways, they do not necessarily provide caregivers with the tools or training they need to genuinely adopt a new perspective and carry out these goals.

This is an important oversight given that caregivers are not merely executing the same care in different physical locations; they are also being asked to engage with people with intellectual disabilities more as human clients and not as objects of care, and to cede significant power and decision-making authority to them (Roeher 1996, Phillips and Benner 1994, Bogdan and Taylor 1992, Rioux 1994a). In other words, caregivers stand to lose power and status in the new models of care. This fact alone suggests that articulating some rationale for why this is the best overall solution could greatly facilitate their acceptance of the shift in care ideologies. Since caregivers are themselves a vulnerable, underpaid economic group, they have not been effective in voicing these concerns but research on the issues in the caregiving systems indicates the caregivers’ dissatisfaction and how that impacts the quality of care they are able to provide (Ungerson 1999, Braddock and Mitchell 1992, Bauman 2001, Amado 1993b, c).

1.3 Research questions and themes

The preceding discussion of inclusion, difference, and caregivers provides the broad context for the questions I examine in this thesis. In Chapter Three and elsewhere, I point to issues in the disability care field generally because these issues are part of what makes L'Arche worth discussing. My ethnographic focus, however, is centred on what L'Arche is doing. I indicate what they do well, how some of their strategies are transferable outside L'Arche, and what can be learned from the unintentional issues that have developed for them with this unusual approach. Although the L'Arche philosophy is clearly religious in origin and spirit, assistants often talked about it as a radical moral alternative and this ethnography reflects that emphasis.

The fundamental question that I address in this ethnography is: How does L'Arche motivate and enable people to become the kind of caregivers it needs in order to carry out its radical ethic of care with people with intellectual disabilities? Motivate denotes how to attract and interest people in the philosophy; enable indicates how to support them to enact and sustain that interest. Fieldwork enabled me to develop several subsidiary lines of inquiry that were salient to the overall research question. Below, I list the three component areas of inquiry which in the end made the most fruitful contributions to the purposes of this ethnography:

· How does the cultural environment of L'Arche encourage “the unique value and vocation” of people with intellectual disabilities to be called forth and nourished?

· How does L'Arche bring about a revised and revalorized ideology of disability, difference, and inequality in practice?

· How does the L'Arche philosophy imbue the basic labour of caregiving with greater moral and political meaning for the caregivers?

The main thrust of my analysis examines the manner in which L'Arche has developed a local moral sub-culture with which, by stimulating moral imagination, it is able to enculturate caregivers into its alternative approach to disability and its ethic of care. L'Arche stimulates their imagination by combining its compelling moral perspective on disability and care with extensive practice and opportunities for direct experience with people with intellectual disabilities in both work and social settings. The actual daily practices and relations are central in L'Arche and it should be clear in this ethnography that it is in the practice of care that caregivers grow and change – not in simply learning the philosophy intellectually.

The daily practices, however, are transformative precisely because L'Arche has succeeded in imbuing them with greater meaning and moral-spiritual purposes. As Geertz stated: “It is in placing proximate acts in ultimate contexts that makes religion, frequently at least, socially so powerful. It alters, often radically, the whole landscape presented to common sense” (1973c:122). Geertz also argued that anthropology needed closer attention to the processes, not just the outcomes, of religion; to study how symbols, especially sacred symbols, actually accomplish the mediation of meaning in daily life that allows religion to achieve “an aura of factuality” for its particular ethos and worldview[v] (Geertz 1973c:89-90). The interpretive analysis of this thesis follows that line of thinking, although with greater emphasis on the moral dimension than on the spiritual.

Although most readers, after reading the ethnographic stories herein, will likely conclude that L'Arche provides a high quality of care for people with intellectual disabilities, I do not attempt to evaluate the outcomes or quality of care specifically. I focus on identifying and explicating the processes that L'Arche has constructed to achieve those ends and on evoking assistants’ experiences of them. A direct evaluation of the quality of care in L'Arche would be a worthy project but would require extensive research with the people with intellectual disabilities themselves, which I did not do here.

I deal with several questions and issues in the ethnography and they operate at different levels of complexity and generalization. At the most general level, this ethnography attempts to contribute to various theoretical areas of concern as alluded to in the prior discussion: the development and evolution of a social movement, the contingency and cultural-construction of medical knowledge, representations of disability, the management of difference and inequality, processes of (re-) enculturation of adults, the meaning of work, and the ethics of care. At the middle-theory level, my principal aim is to name and elaborate on those ideas, practices, and structures in L'Arche which seem most effective and most transferable to outside organizations. Some of the key strategies that I describe and analyse are: a strong case for inclusion and revalorizing difference, the emphasis on mutuality in caregiving relations, the use of story-telling to humanize the caregivers’ understanding of people with intellectual disabilities, the ideologically-informed use of space and time in the homes to facilitate interaction, and the L'Arche attempt to care for the caregivers.

Finally, the ethnography works at the local or site-specific level. I use the analysis to name, and pull back, some of the veils which currently prevent the organization’s attempts to understand the causes of the strain and confusion that some of their caregivers feel. In particular, I address questions related to the recruiting and retention of caregivers (assistants) and the connection of these questions to the mission of L'Arche. The two-fold L'Arche mission is to create homes and live in solidarity with people with intellectual disabilities and to thereby be a sign to the world that diversity is possible and desirable, implying that socio-political change is necessary. Both aims of the mission are radical in the field but as I will show, the first aim has, over time, come to dominate the time, energy, and resources of the communities. There are good reasons for why the emphasis worked out in this way and it has had many fruitful effects. In the end, however, I conclude that this imbalance in attention ignores the fundamental interdependence of the two goals; how they inform and fuel each other.

My interpretation of the tone and concerns of the assistants in Canadian communities today is that, as a whole, many assistants feel that the communities are too inward-looking, too politically conservative, and not connected enough with the developments and issues in social justice generally or in the field of disability in particular. These themes were most common among assistants with 1-5 years experience, but were also present among a sizeable share of the long-term assistant group. Restlessness, and eventually dissatisfaction with the limits of the role, and their potential to grow and make a difference (within the current inward-direction), was a commonly noted precursor for leaving L'Arche; much more common in fact, than any intrinsic issue with the community or role per se. Generally, assistants did not want to give up the important home life and L'Arche relations, but they expressed a need for a greater sense of connection with the broader field and community as well. This is notable given that L'Arche could not survive if all assistants saw the home role as a mere stepping stone. Instead, they wanted to learn to do both. A number of assistants expressed a desire for ways and means, however small or simple, to work from within L'Arche to effect greater change in the general social conditions affecting the lives of people with intellectual disabilities.

1.4 Approach to the research problem

This ethnography is based on a year of fieldwork in L'Arche communities across Canada. The principal component of the fieldwork was active participation and observation in the communities. In these communities, I divided my time between being a live-in L'Arche assistant (caregiver), initiating other research activities such as interviews and observations, and participation in community events. I interviewed and spent time with a wide range of L'Arche assistants who differed in age, location, experience, and roles in the community as well as some who were no longer with the community. This breadth of research was an advantage because it exposed me to the manner in which assistants’ perspectives can deepen and shift over time; in particular, as they learn from and experience new ways of dealing with the inherent challenges of community living. I elaborate on the details of the methodology in Chapter Two but I provide some reflections on the process here.

In a thoughtful reflection on research, Foucault questions the value of knowledge that does not also result in “the knower’s straying afield of himself” (1990:8). The experience of simply being part of the world of L'Arche was powerful for me personally; it awakened me to new ways of understanding and dealing with people and issues that had bothered me for years. To give just one example, I found that lessons that I had heard for years about the value of forgiveness came alive for me in that context through the observation of many examples of both the people with intellectual disabilities (core members) and the assistants. Again, the combination of ideas and practice and the chance to observe other people in practice made the experience especially potent. The research process itself also yielded to me many insights that helped me in ways that reached far beyond the project. Various assumptions I held about human nature and motivation were questioned and proven wrong by the assistants and core members.

These lessons often came through most clearly during formal interviews in which I was struck by the questions and challenges that I shared in common with the people who volunteered to share their stories with me. I was particularly moved by the complexity of individuals’ struggles with religion and the generous acts to which it had often moved people. The similarities I shared with the people I was attempting to research sometimes made achieving distance difficult (see Chapter Two). Nevertheless, similarities also helped me to avoid a common pitfall in self-narrative research: taking too literally what people say they are. Having some shared background, I was well-positioned to “go beyond the words” as Wikan put it, to attend to “the intent they are trying to convey,” and who they are trying to be in the world (1992:466).

Ethnographic methodologies were especially fruitful in this research for a number of reasons. Participant observation produces an unusually wide variety of data types and helps a researcher develop an intuitive understanding of a culture as well (Bernard 1994:140-3). The grounded and engaged nature of fieldwork provides anthropologists with unique insights into the daily reality of people and how that often differs from their official accounts of life and their stated ideals. This was useful in L'Arche where the ideals are respected and aspired to by most assistants. As such, there is much pressure on them not to question the standards which are called for, even when the expectations seem unrealistically high and lead them to feel inadequate. In official discussions of L'Arche, the sacrifice and hardship borne by assistants in fulfilling the aims of the mission are usually off-camera. This is a result of the organization’s desire to show the positive side of interacting with people with intellectual disabilities. While that desire is admirable, it creates umbral areas for the leaders when they try to understand the roots of assistant-related issues. For example, since stories of positive relations with people with intellectual disabilities are vastly more common than negative ones at L’Arche, assistants who are having normal difficulty with the transition can mistakenly feel that they must not be cut out for the position. They should be helped to see that others before them have faced the same issues and learning curve in dealing with people with intellectual disabilities.

Sherri Ortner suggests that good ethnography should examine both the “meanings and the mystifications” which form the basis for people’s decisions and actions (1995:188). Meanings refers to people’s official accounts of why they believe or do what they do. Mystifications refers to those reasons which are at a less conscious level for people or even intuitions and beliefs which are not “reasons” at all but still exert a powerful influence on choices. Ortner further notes the danger when anthropologists fail to put all of the pieces of an ethnographic puzzle together, either because they want to protect the subjects’ reputation, protect their own relations with the subjects, or to present the subjects in the best light for advocacy-related reasons (e.g. land claims, reparations, rights negotiations, social assistance benefits, and so on). While these are not bad motives, she insists that the resulting “interpretive refusal” is ultimately illogical because basically, it makes for poor analysis, which can only lead to poor solutions (Ortner 1995: 176-79). In other words, she argues that in the long-run, our interpretive refusal is an avoidance of our professional responsibility to do analyses which strive to provide vulnerable subject groups (and others who can assist them) with as accurate an understanding of their history, situation, and issues as we can (Ortner 1995)[vi]. While this ethnography presents many positive aspects of L'Arche, I strive to name and illuminate some of the unintentional shadow sides and detrimental effects of the L’Arche approach to caregiving and community.

1.5 Chapter Summaries

I begin the thesis with a thorough discussion in Chapter Two of the evolution of my research questions, the theoretical framework for the research, and the methodology and research plan. I outline why the methods, plan, and theories that I employed were appropriate to the problems I wished to explore and to the site where I wished to explore them. In the interest of making the qualitative research process and, in particular, participant observation more transparent to the reader, I also outline errors in my research design and the ways in which I executed the methods less effectively than I could have. Identification of such weaknesses helped me to recognize various inaccurate assumptions I had made about the beliefs of the assistants and to base my analysis on the more thorough aspects of the research data. Finally, I outline key ethical and methodological issues that I faced in the field related to conducting research in one’s own country, with caregivers, and with people with intellectual disabilities.

Although this thesis is focused on the L'Arche assistants, it is essential, for context, to lay out a general history of people with intellectual and developmental disabilities and how they have been cared for. In Chapter Three, I explain how this category of person and medical classification emerged as well as the culturally-constructed stigma associated with the label. I outline the history of changes to the official definitions of intellectual and developmental disabilities over time, the known causes of the impairments, the existing treatments, and estimates regarding the size of this group. I discuss at length the different forms and ideologies of care for people with intellectual disabilities over time as well as the issues which each of them present or, at least, fail to resolve. Chief among these are deinstitutionalization, the theory of normalization, the bio-medical model, independent living and the disability rights movement. I argue that while contemporary movements have achieved progress in procedural inclusion and the material conditions of life for people with intellectual disabilities, these movements have not been able to achieve much change in public attitudes towards these people. This is partly because most models do not radically, or credibly, challenge the deficit model of disability. Generally, the continuing existence of issues in the field of disability is what makes L'Arche, and its alternative approach, worth discussing.

I build on that broad history by re-constructing an extensive analysis of the story of L'Arche in Chapter Four. L'Arche developed at the confluence of several important changes in society, religion, and public beliefs about the utility, efficacy, and humanity of large, congregate care facilities in the late 1960s. I discuss the evolution of the origins, philosophy, and radical mission of L'Arche communities in France and later in Canada and abroad. I attempt to show that “History is not simply something that happens to people, but something they make” (Ortner 1984:159; my emphasis). I begin by outlining the lives of the founders and, later, how their personal aims are distinct from the organization’s aims today. I situate the L'Arche philosophy in the context of the field of disability care in order to highlight how it differs philosophically and in practice from dominant models. L'Arche offers stimulating alternative ideas to the field, particularly in its strong case for the social value of greater inclusion of people with disabilities.

L'Arche shares many beliefs and practices with mainstream care organizations in Canada but also offers a distinct vision of care and well-being (quality of life) through its inversion of various conventional therapeutic aims. This does not mean that L'Arche is a universal solution that meets the diverse needs and desires of all people with intellectual disabilities. L’Arche does offer, however, a potentially unifying ideological rationale for helping to shift mainstream public and caregiver attitudes about people with intellectual disabilities. Historicizing the emergence and development of L'Arche also illuminates some early structural and philosophical origins of current L'Arche-specific concerns.

In Chapter Five I tackle the question of why people want to live and work in L'Arche as assistants, in Canada today. I begin with a review of whom L'Arche would like to have as assistants, what they think about whom they get, and ways in which the L'Arche culture has prevented a better understanding of the serious recruiting and retention issues that they face. My focus is on what it means to these young people to choose this line of work, especially in a moral sense, and what this tells us about who they are trying to be in the world. I examine what assistants expect from their time in L'Arche and I analyse the blend of self-interest and altruism, or social concern in their motives and how people mediate the tension between them through both talk (discourse) and action. Being an assistant is a multi-faceted choice, but many people have political or social justice motives for engaging in this type of work, fuelled by a desire to make a difference in the world. Consequently, a certain feeling of moral authenticity seemed to be imparted to their identity through this sort of work and lifestyle. Nonetheless, I also show how the socio-political goals, which many assistants enter with, are not given sufficient opportunity to blossom in L'Arche; this is an important, but heretofore unidentified, reason for people, who otherwise like L'Arche, to leave. I believe this is tied to an overemphasis in daily practice on the “homes” part of the mission (i.e. being, belonging) to the detriment of the symbolic, political, “hope” (i.e. becoming) aspect and a subsequent ethos of personalism, anti-politicism, and inward focus in the communities.

Chapter Six is an extensive description of the structure and process of enculturation that L'Arche provides for all assistants. Enculturation at L'Arche blends spiritual and moral ideology with practice, or experience. Enculturation creates a moral environment in which L’Arche’s alternative model of disability and ethic of care can thrive as well as creating caregivers who can reproduce that environment. L'Arche believes that good execution of their model of relational, mutual care requires a new kind of caregiver. What L'Arche asks of assistants is radical so most people need the combination of learning the philosophy and practicing it daily in order to grasp fully its ramifications. This transition in moral imagination takes time and requires significant supports to bring about and sustain because it is difficult and can be emotionally draining.

I discuss how L'Arche attempts to support and care for its caregivers in various ways and also how it provides them with a spiritual-moral explanation to give ultimate meaning to their proximate, daily hardship and sacrifices (Geertz 1973c:122). I outline how the communities attempt to revalorize difference and disability as well as to redefine what productivity means in this caregiving context. I also detail community tactics, such as the use of informal narrative and unconventional use of space and time to produce its ethic of care in practice. While these ideas powerfully reshape caregivers’ moral imaginations in positive ways, they have also had certain unintended unhealthy side-effects for some assistants. Discussing the side-effects of these sacred, and sometimes mystified, values in L'Arche should help to clarify the issues.

Chapter Seven provides an extensive analysis of perhaps the key reason for the credibility of the L’Arche philosophy and model: the common, and surprisingly mutual, relationships between assistants and people with intellectual disabilities in their communities. I discuss the cultural and systemic barriers that have historically worked against the possibility of such relations in the public and mainstream health care agencies, in order to show how unusual such relations are. Research shows that the lack of relationships is still a major issue for most people with intellectual disabilities in Canada and the USA. I provide a detailed definition of what L'Arche leaders and assistants seem to mean by mutuality and relationships using data from fieldwork and interviews as well as formal community documents. Defining these terms is essential in helping new assistants see the degree to which mutuality is a regulative ideal and long-term process and not, as they sometimes feel and are intimidated by, something that is expected of them immediately. I discuss how assistants mediate between mutuality as a regulative ideal and mutuality as it is possible to live in the homes. Further, I show how they are aided in this project by enculturation, which teaches them to learn the value of simply being present and to recognize the unconventional gifts which people who are different have to offer.

I discuss how both assistants and people with intellectual disabilities must actively negotiate the terms and conditions of mutuality across the unavoidable power imbalance inherent in the relations, an imbalance caused by structural inequality and actual difference. The success of these negotiations is predicated on whether L'Arche has successfully created a sense of solidarity, commonality, and appreciation of difference between caregivers and core members. Stories about particular relationships (successful and failed) between particular people are provided throughout the chapter in order to move this idea from the realm of liberal cliché to that of radical practice.

In Chapter Eight, the conclusion, I pull together the various pieces of this case of enculturation and radical caregiving. I offer thoughts on what lessons the experience of L'Arche provides for mainstream care providers and on implications of my analysis for the future of L'Arche itself. A secularized version of the L'Arche philosophy could provide a strong foundation for uniting several contemporary movements and heightening their effectiveness. This could be accomplished by helping them to speak more convincingly to the sociological imagination of the public regarding the social value of people with intellectual disabilities. It is already clear that this will require more than physical relocation of people with intellectual disabilities. This means actively encouraging a cultural shift in the understanding of disability.

I summarize the implications of my research for L'Arche questions around retention, the mission, and revitalizing its early dynamism. The latter two are particularly urgent issues given the anticipated diminution of direction and energy from their charismatic leader, Jean Vanier, as he ages. In the conclusion, I extend an argument which I build subtly throughout the thesis. This argument deals with what I see as an imbalance in how the communities are currently living out their mission. The dual mission of L'Arche involves the two radical aims of creating homes and relationships with people with impairments, and being a sign of the value of diversity and compassion to the world through their example. A lack of emphasis on the latter, externally-oriented part of the mission, risks allowing the former to lose its radicalism and become merely reformist. I finish by outlining the potential benefits of greater external, grounded political engagement for L'Arche, its assistants, and people with intellectual disabilities in general.

1.6 Endnotes