8 - Conclusion

P. J. Cushing 2003

L'Arche is a community and a caregiving organization with multiple dimensions and ideas. It holds together a substantial diversity of caregivers who have different interpretations of where L'Arche should be headed. They all agree, however, that their experiences in L'Arche touch and shape their lives in deep, inexpressible ways. A social science perspective on their experiences of becoming and being assistants in L'Arche is inescapably partial. Social sciences are grounded in the particular traditions and beliefs of rational Western thought, making them inadequate purveyors of the full import or holism of deep spiritual experiences. This study is thus limited in its capacity to evoke those deeply significant parts of assistants’ experiences in L'Arche. My strategic choice to focus more on morality than spirituality in the communities adds to that issue. For perspective, after reviewing a chapter of this thesis, one assistant wrote:

I understand the real value of an attempt to explain L'Arche in academic language, and the analysis certainly rang true to my experience there; but at the same time, after reading it, I felt like something was missing. There are parts of L'Arche, and being an assistant that simply don’t make sense- they’re nonsensical if you will; I suppose it just doesn’t all lend itself to reason or explanation.

Nevertheless, the ethnography provides insightful perspectives on many other aspects of the L'Arche world. In this conclusion, I review the key questions on which the research was based. I then discuss each of the chapters briefly. Following this, I outline the areas to which this ethnography contributes: anthropological theory, transferable ideas and approaches for the disability and caregiving fields, and, specifically, implications for the future of L'Arche. I close with a discussion outlining possible directions for future research.

8.1 Research questions

In a return to my original research questions, it should be recalled that with this inquiry I aimed at the following examination: 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 for people with intellectual disabilities?

I also presented three component areas of inquiry regarding the manner in which L'Arche: facilitates the personal growth of people with intellectual disabilities; revalorizes disability, difference, and inequality; and makes care-giving morally, spiritually and politically meaningful for the caregivers. I have shown that L'Arche has developed a local moral sub-culture within which it stimulates the moral imaginations of the assistants as part of the process of enculturation into its ethic of care and alternative approach to disability and difference.

L’Arche achieves these aims through a combination of its compelling moral and spiritual perspective on disability and caregiving with extensive opportunities for direct experience with people with intellectual disabilities. Although the ideas and ideology are powerful, knowing them intellectually is only a first step. The daily practice of caregiving is essential to assistants’ development; it is transformative for them precisely because L'Arche has succeeded in imbuing it with greater moral and spiritual meaning. It is in the practice of care, and the relationships which grow out of that care, that assistants actually grow and change.

8.2 Chapter summaries

Chapter Two presents two major goals regarding relevant ethnographic methods. The first was to make the complex and variable methods of participant observation and interpretive analysis as transparent to the reader as possible. In order to accomplish this goal, its inherent strengths and weaknesses are named, in addition to limits arising from my errors or oversights. The second goal was to illuminate the complexity of the ethical conundrums involved in performing research on people with intellectual disabilities and the need for social scientists to think through the issues involved. Issues of consent are paramount here; however, related issues of representation and voice are also critical. Anthropologists are well-positioned to contribute to this discourse given the field’s extensive literature on such concerns.

In Chapter Three, I illustrate the compelling history of the cultural construction of intellectual disability as a medical category and a stigmatized social category, how these processes can not solely be blamed on caregivers or technologies of care. The technologies generally arise out of, and are reflections of, widely-held social values. I describe the progress made by the current, dominant approaches to caregiving and disability in the field, as well as ways in which they could go further to improve the conditions of life for people with intellectual disabilities. I use the literature to show that genuine social integration for people with intellectual disabilities is far from a reality in spite of their physical relocation into our communities, and that family homes and smaller care facilities do not necessarily eliminate the neglect, condescension, and abuse that have scandalized large institutions.

I suggest that one of the principal reasons that deinstitutionalization and community living have not radically altered the dominant public view of disability as a deficit is that the ideologies that they are based on have not given the public or caregivers a clear rationale for a positive valuation of disability. The L'Arche philosophy of difference and disability offers a unifying ideology for the field. Its approach to care offers strong evidence of the moral and practical value of proper supports for caregivers.

Chapter Four positions L'Arche in social-political time by demonstrating the confluence of several factors which aided its emergence. I outline the key pillars of the L'Arche philosophy and how it is distinct in the field for its revalorization of disability and its equal emphasis on relationships and independence. It is also important to clarify two things in L'Arche’s history which are often vague and sometimes intimidating for young assistants today. First, the ideas, philosophy and spirituality, that L'Arche is now famous for, evolved over time through experience, effort, prayer, and relationships. In order for new assistants to learn how to live these precepts, it is necessary that they have time and practice. Second, Jean Vanier spent many years in contemplation, service, prayer, and study before he was at the stage of personal and spiritual development from which he could give himself over to the life of an assistant. He understands that this journey takes time and feels that people should discern a path that works for them, not feel tied to a perceived L'Arche ideal. Although people tend to focus on his messages about being and belonging, Jean is also a model of becoming in certain areas where he continues to expose himself to new risks after almost 40 years of L'Arche. For example, he regularly agrees to speaking engagements with non-L’Arche audiences who see the world differently.

In Chapter Five, I use self-narratives of assistants and volunteers with L'Arche to lay out a multi-dimensional picture of what it means for them to be in L'Arche and why they wanted to live and work there. The language patterns they use to talk about these questions are also analyzed. My analysis points to three main themes. The first of these involves the question of whether assistants come to give or to get (i.e. altruism or self-interest) and animates much of this discussion, as is often the case with research into what motivates caregivers. It is apparent that motives reflecting the analytical concepts of altruism and self-interest appear to co-exist, overlap, and be regularly reassessed by assistants. However, what they consider to be in their self-interest often shifts substantially once they experience L'Arche. Second, for many assistants the meaning of living in L'Arche was connected with their desire for a more authentic lifestyle, or a way to live their values. The work thus held particular moral weight as an enactment or embodiment of beliefs. Finally, I seek to emphasize the degree to which assistants expressed humanitarian and grassroots political desires as part of their motivation to join L'Arche, and the implications this has for retention of staff.

Chapter Six presents my findings on the central issue of the thesis: motivating and enabling assistants to reproduce L’Arche’s radical ethic of caregiving. I examine five key, interdependent elements of the ideology and process of enculturation in order to illuminate both their positive outcomes and unintentional side-effects. Overall, I endeavour to show that, while the ideals and leadership are important, the success or failure of new ideologies of care can rest largely on the willingness and ability of direct caregivers to enact them. New ideologies often neglect to address ways in which their goals for ameliorating the lives of clients often involve demands of caregivers; demands which are in direct conflict with the caregivers’ own needs. Convincing caregivers of the ideological rationale behind the need for changes, and supporting them to sustain the changes over time, is essential to achieving real change in attitudes and care.

By describing in detail the structures and uses of space and time in L'Arche, I show not only the powerful effect of reproducing organizational ideals in elements of daily life but also the real challenges with executing such radical ideals. The discussion of redefining productivity to include time for relationships contributes to the importance of practice in assistants’ moral transformation. Among caregivers, informal story-telling about their experiences with people with intellectual disabilities is shown to produce a sense of commonality and to humanize perceptions of disability through emphasis on each person’s particularity. The stories help to indirectly establish what counts in L'Arche; they help assistants learn to recognize the unconventional gifts of people with intellectual disabilities. Finally in Chapter Six, I show how the L'Arche model can be translated into a more general case for the social value of diversity and inclusion of people with intellectual disabilities.

One of the most difficult tenets of L'Arche to understand, for people new to the field, is the belief that rich relationships of mutual growth are possible with people with intellectual disabilities. In Chapter Seven, I examine this aspect of L'Arche directly, including why such relationships are considered unusual in the first place. I begin by laying out a six-part vernacular definition of mutuality as it is broadly understood in L'Arche, in order to clarify what they do and do not mean by the term. They are, for example, not claiming that what is given by each person in a relationship is equal, but of an incomparable quality. Caregivers’ physical labour is not reciprocated in kind but L'Arche assistants feel that they are enriched or compensated by the core members in other ways. I present diverse stories of the relationships that have developed; the kinds of lessons the assistants feel that they have learned from being near to the core members and how they have learned to recognize the core members’ prophetic capacity. I also emphasize, however, that the daily process of learning to be open to these relationships, across difference and inequality, is perhaps just as vital. This process transforms assistants’ basic attitudes towards difference and continues after they have left L'Arche.

Rather than focus only on the positive side of these relationships, I also discuss how difficult they can be in practice. I show how much energy is required of the caregivers as they constantly try to negotiate the relationships across substantial difference and inequality in power and capacity. I demonstrate that assistants and core members continually and actively renegotiate the possibility of relationship in the daily life of the home, particularly in situations where their needs, desires, or responsibilities conflict. Growth can emerge from the conflicts as well as from the enjoyable times, when they are interpreted and experienced through the lens of the L'Arche philosophy.

8.2.1 Contributions to knowledge / anthropology

In this ethnography, I have primarily attempted to use anthropological theory to illuminate the local moral world of L'Arche, rather than the opposite. However, it is important to indicate the ways in which this ethnography, and the L'Arche experience, contributes to the field of anthropology. There are six relevant contributions that I identify.

This ethnography presents a strong case for the cultural construction of perceptions of people with intellectual disability and the significant degree to which the constructions determine how people with disabilities are understood and treated. The contingency of the deficit model of disability from which those ideas work is dramatically revealed in the fact that L'Arche has achieved such a shift in attitudes and relational possibilities between people with and without intellectual disabilities. Related to this is the contribution that this ethnography makes to the anthropological project of heightening cross-cultural respect and awareness. I achieve this by articulating the way in which L'Arche represents and enacts a strong case for the social value of diversity. This concept moves beyond cultural relativism or liberalism to show how worthwhile it is for both parties to build bridges across the cultural divide between people with and without intellectual disabilities.

My analysis of the negotiation of power-sharing across inequality in the relationships in L'Arche provides a compelling case for an organization that is attempting to make the rhetoric of “patient empowerment” a reality. It reveals two things; the regularly neglected fact that this approach requires the power to come from, and be given up by, someone else, namely the caregivers; and how L'Arche is attempting to compensate them in innovative ways.

Another contribution of this ethnography to anthropology is the analysis of the process of enculturation and how people experience that process as transformative. Humans are all enculturated from childhood into a given cultural belief system. However, the L'Arche case is particularly interesting because it seeks to teach adults an alternative set of beliefs, parts of which conflict with their existing set. This case contributes to the anthropological interest in facilitating cross-cultural understanding and how to assist people in integrating into new cultural settings. My emphasis on moral aspects of the enculturative process makes the case relevant to a variety of scenarios involving ethical differences.

Narrative theory has been a growing area of interest for anthropologists as we examine more deeply our analytical methods which often involve narratives of various sorts. In this ethnography, I discuss how self-narratives are framed and shaped by the particular organizational culture in which people find themselves. Principally, however, I present a detailed examination of the productive and didactic power of informal narratives told among caregivers about people with intellectual disabilities. These stories shape the construction of knowledge and health care in L'Arche by putting a human face on disability and difference. In this account, individualized, nuanced stories emerge as a powerful counter-point to the typical homogenizing, deficit-focused conceptions of disability. I also talk about the issues with narratives as a primary enculturative tool, given their ambiguity and covert cultural biases.

This thesis also contributes to the study of work and, in particular, the meaning that some people place on being a caregiver. While the discussion of L'Arche assistants’ motivations and beliefs about their work is not fully generalizable to mainstream care, there are likely several overlaps in substance, if not degree.

8.2.2 Contributions to the disability field

Overall, the thesis shows that while the L'Arche model in its entirety is not a universal solution for the disability field, aspects of it could be highly useful in helping move the mainstream care organizations further in their goal of promoting the well-being of people with intellectual disabilities. Below, I outline five key lessons for mainstream care providers that the experience of L'Arche suggests.

The primary lesson that I hope to illuminate for mainstream readers is that a secularized version of the radical L'Arche approach to disability and difference could provide a strong foundation for uniting several contemporary movements. It could heighten their effectiveness by providing a compelling ideological route out of the deficit model of disability that dominates the public imagination, that reproduces a devalued social role for them, and that considers them primarily as a cost and a social burden. A modified version of the L'Arche revalorization of difference would help mainstream agencies to speak more effectively to the sociological imagination of the public through its rationale of the social value of people with intellectual disabilities.

Second, the L'Arche example demonstrates that in order for deinstitutionalization and community integration and living to be effective, leaders and advocates in the disability field need to make a special effort to bring about a cultural shift; to teach the public and caregivers how to unlearn old stereotypes about disability, and to learn to appreciate and like people with intellectual disabilities. This appears to require the use of a “pull strategy,” which would create interest, in opposition to the typical “push strategy,” which transfers people with intellectual disabilities from institutions into communities without attending to the strong, if latent, public will to keep them out. There is certainly enough evidence now that it will take more than physical relocation of bodies to convince the public that they ought to change how they view people with intellectual disabilities.

Third, L'Arche’s approach provides several tools such as alternative uses and priorities of space and time in congregate care. It also promotes informal story-telling among caregivers, which, as noted above, could be employed in the process of shifting attitudes. This could be accomplished by altering the framework within which caregivers interpret their experience of people with disabilities.

Fourth, the tools provided by L’Arche pave the way for a heightened emphasis on promoting better relationships between caregivers and those receiving care. Independence has reigned as a sacred value in mainstream care since the early 1970s. However, because the data increasingly shows how lonely many people are who live independently or in small care facilities, some practitioners are shifting to a promotion of “autonomy”, which includes a sense of the importance of relationships. Without a shared home life the relations possible in mainstream care would not likely be as deep or common as in L'Arche, but could still move in a positive direction. It is possible to create an ethos in which caregivers are given serious training in ideological and practical tools that would help them to open up to an appreciation of the unique and unconventional character of people with intellectual disabilities; to see them as individuals who share the same kind of hopes and needs as the caregivers. Clearly, with any vulnerable population like this, there would need to be checks in the system to prevent abuse; however, this is not an insurmountable issue. In order to not burn-out meeting others’ relational needs, caregivers would also need to be supported to place limits around the relationships.

Fifth, this work provides valuable evidence in support of claims by feminist philosophers and psychologists about the importance of articulating an ethic of care that would reflect the particular experiences and moral pressures faced by people who do “dependency work.” L'Arche is an example of an attempt, albeit an imperfect and evolving one, to care for the caregivers in a way that enables them to do their work well, on a sustaining basis, without them all becoming run-down and personally depleted in the process. Programs that seek to improve the quality of care provided, without considering what supports the direct providers of that care will need in order to give more of themselves, are bound to fall short of expectations.

Finally, in the discussion of research ethics, I highlight the importance of bringing researchers and practitioners together with people with intellectual disabilities in order to work out a set of research ethics for dealing with people with intellectual disabilities; a set of ethics that is more specific and prescriptive than what is currently available[i]. The complexity of the issue and the tough questions that are involved has meant that most researchers have avoided clarity in their consent process; whether the caregiver or client was answering the questions and on what basis s/he did so. Ideally, some set of guidelines could be set up as a standard. Researchers could, in the future, discuss ways in which they might adhere to the standard or vary from it for valid reasons. At the very least, standardized guidelines would provide a minimum expectation of respect and consent.

8.2.3 Contributions to L'Arche specifically

“The punishment of wise men who refuse to take part in the affairs

of government, is to live under the government of unwise men.”

(Plato 360 B.C.)

In L'Arche, I had the privilege of seeing new assistants learn from compassionate, skilled leaders. They learned to think about difference and disability in new ways. It was an honour to watch as the moral imagination of young people was ignited, brought to life, and enriched. This shift in moral perspective, and the mutual relationships it fosters, is discussed at length in the thesis, as are some of the issues with the organizational culture. These discussions offer specific and lengthy suggestions for L'Arche. A synthesis of these findings follows, accompanied by an examination of how they inform the key questions about the mission and the revitalization of the organization that the L'Arche communities are currently considering. I propose a re-radicalization and re-politicization of the organization by calling forth the energy of all community members and friends towards a shift in how the mission is being lived.

Here, I extend the argument which has been alluded to throughout the thesis. I believe there is an imbalance in how the communities are currently living out the L'Arche mission. The dual mission of L'Arche involves two radical goals: 1)creating homes and relationships with people with intellectual disabilities, and 2)being thereby a sign of hope to the world for the social value of diversity. Taken alone, neither aim is necessarily radical: creating homes can become simply reformist, and simply signalling or talking about diversity can become merely liberal. Sharing life with people with intellectual disabilities in the homes, assistants are intimately exposed to individuals’ experience of dependency and suffering. Without this, the L'Arche message would be flattened and diluted for the assistants and the public. Most long-term assistants agree with this. I contend that the radicalism of life inside the homes is also diminished when it becomes severed from the reality of its society. When assistants are not taught, and regularly reminded of the unusual nature of their lives in the homes, their work also suffers a loss of broader meaning, energy, and moral significance.

The two elements of the mission are radicalized when they are combined because assistants’ experiences in the homes can galvanize an understanding and compassion that can fuel sincere, grounded efforts for social and political change. Vanier noticed early that the pain of rejection faced by people with impairments or other stigmatized differences often felt worse than their physical suffering. In a radical framework, assistants feel that the energy spent on creating homes is not merely an amelioration of the quality of care for a few people with intellectual disabilities. Rather, they feel it is an important component of the broader effort to change the conditions that produce the stigma and rejection of people with disabilities in the first place. I do not mean to imply that what is done in the homes is unimportant or less important than externally-oriented efforts. Indeed, the homes are the central place from which these grassroots efforts would need to come. But in my interpretation of the mission, L’Arche was not meant to only help those inside of it; they wanted the example of their relationships to inspire broader change in how our society perceived and treated those who were different from them. In order for this to happen, other people need to become aware of those relations.

Over time, the “homes” element of the mission has grown to be more central than the “sign of hope” element; the former utilizes most of the resources of the communities. There are, no doubt, good reasons for why this happened. Perhaps the organizational tasks of managing growing communities were more complicated than originally expected. Alternatively, L'Arche leaders may have thought that mainstream care agencies had already gotten the message since they had planned big changes in the 1970s. It is now obvious that those changes have helped but that much remains to be done. In North America, where the normalization ideology was very strong, L'Arche was not always well-received by those agencies, possibly because of its refusal to make independent living, instead of relationships, its primary rehabilitative goal. The most significant reason for the homes emphasis however, was probably that while the founders wanted to create broader social change, this goal was likely in constant tension with factors which pulled the energy and focus of assistants and leadership inwards to the pressing, practical, daily concerns of the homes.

L’Arche tries to keep both elements in play for assistants. However, my research suggests that, in reality, the broader, symbolic vision is often sidelined by the urgent and compelling concerns of daily life in the homes, as well as by the operational and spiritual value placed on the importance of the little, daily things, over grandiose claims. This cultural belief is grounded in experience, an experience that has shown that living out this new paradigm of care is difficult, requires an ability to focus in the present and take comfort in the small consolations that are offered, rather than hoping for major changes. As valid as that belief is, it inherently diminishes the perceived importance of unpopular, and politically challenging, moves and thereby discourages interest in them. But the two elements are interdependent and each is essential to the force of the other.

The problem is that the two elements, homes and signs, seem to suggest conflicting priorities and courses of action. I argue however, that L’Arche needs to work harder at holding the two aims in tension rather than continuing to leave the “sign of hope” element underdeveloped. Radical activism[ii] becomes unworkable and dogmatic when unmoored from the urgency of daily life. However, reformist action, that disregards critical reflection on its broader purpose, lacks energy, direction, and conviction. The communities need to think about how to create opportunities in order for the two aims of the mission to be realized together. For example, the homes could be encouraged and trained to develop, as a team, practices which would have the core members and assistants connect with the broader public, rather than just being in public places. This is not an easy task, but my research indicates why L’Arche should make this effort; it would be helpful to society as a whole, the assistants and their caregiving, and L'Arche as an organization.

The world still needs L'Arche to pursue the “sign of hope” element for the benefit of people with intellectual disabilities. The public, and many caregivers, still need to hear the kind of message that L'Arche espouses about the value of people with intellectual disabilities. The social and economic conditions of life did not change for people with intellectual disabilities as much as hoped after deinstitutionalization. Stigma and social isolation continue to be a reality, in spite of some improvements in these people’s legal rights and material quality of life. Having been located in communities has not automatically or naturally led to changes in how the public truly feels about them. The L’Arche philosophy is well-suited to address these attitudinal issues. It offers and enables a new interpretive framework for understanding people with intellectual disabilities on their own terms, rather than forcing them to conform to standards of normal set by other people. Inclusion, contingent upon marginalized people performing as normal, is not an acceptance of difference at all; rather, it is a continued enforcement of sameness. By making grassroots efforts to extend awareness of that philosophy, L'Arche could contribute to changing social conditions for all people with intellectual disabilities, not just those within its homes.

Amplifying the energy spent engaging more often with the broader society would likely improve the satisfaction and motivation of assistants in L'Arche as well. Although assistants often indicate that working towards socio-political change is one of their motives for going to L'Arche (see Chapter 5), they rarely use such politicized language in their everyday conversations once they are there. The internal accent on spiritual life tends to transcend or even preclude the more political features of their mission. In addition, assistants’ priorities shift in the short-term because the immediate needs of the homes and core members pull their focus inwards. Over time, however, the ultimate meaning of the role fades; without regular contact with people and approaches of other agencies for comparison, what occurs in the homes is naturalized.

In short, L’Arche assistants lose sight of the radical nature of what they are living. The relationships and the spiritual life continue to be enriching and enjoyable but the connection between their activities and a social justice framework grows more ambiguous for most. This is unfortunate because knowing more about the L'Arche history, how its approach compares with the field, would lend greater significance to people’s activities.[iii] Most assistants want a chance to exercise more than simply their home-oriented skills. My research indicates that when some assistants do not have those opportunities, they become restless and tend to move on. Creating opportunities to bring forth these other energies found in L’Arche assistants enhances their growth or “becoming” goals and prevents stagnation, self-satisfaction, and boredom. Re-politicizing L'Arche represents a pushing of assistants to think of small ways in which the house activities could be more visible and engaged with the public. It could also mean giving assistants the support to attend meetings of professional caregiving and disability associations in order to learn about other approaches and share stories about L'Arche with them.

Providing these opportunities for assistants would also be good for L'Arche itself and for the core members. Improved job satisfaction of direct caregivers in other organizations has been shown to result in a higher quality of care and longer caregiver tenure (see Chapter Six). Tenure and quality of care are two important priorities for the community. My research indicates that L'Arche assistants, who are aware of, and develop their understanding of, the moral and spiritual significance of L’Arche’s message for society and the disability field, feel more satisfied with their daily tasks and are willing and able to stay longer in the role. A few communities encourage this already, and many others have made initial efforts to do so, but it could be more effective as an organization-wide effort. Communities could share ideas and success stories with each other. Opportunities to step outside of the L'Arche culture and observe other agencies would help to disrupt the routinization and naturalization of what assistants do in L'Arche. It would also revitalize their sense of wonder about their work and remind them that what they are doing is unusual. They should not stop asking, “Why does L'Arche have to exist?”

8.3 Directions for future research

This ethnography is somewhat evocative of life as an assistant in L'Arche; it does not achieve a detailed sense of the flow of life for particular assistants or core members over a period of time. Rather, I have shown mainly snapshots of their lives, beliefs, and behaviours through the use of stories, observations, or quotations from them. Given the initial sensitivity in the community about my presence as a live-in researcher, I do not think that it would have been acceptable to them for me to track particular lives in complete detail. As a result, I do not have the data to produce a rich micro-ethnography such as Abu-Lughod (1993) or Brody (1981). Relationships are of such importance in L'Arche that I think the ethnography I have written suffers somewhat for this; it does not adequately provide a sense of the ebbs and flows of an individual’s day, week or year; nor does it adequately represent the rich interrelations which animate the communities and are a vital part of why people enjoy being there. As a newcomer to L'Arche I may not have been able to achieve this goal; however, it would be a good project for someone who has lived there and who has established trusted relationships with people willing to participate in the endeavour.

The second limitation to the ethnography involves a lack of space to include a discussion of the cultural construction of health and illness for assistants at L'Arche. Burn-out, serious fatigue, and sometimes depression are common in L'Arche and the caregiving field generally, a field which can be emotionally, physically, and psychologically demanding. I originally intended to use medical-anthropological approaches to examine these idioms of illness in L'Arche: how they are shaped by the community’s central metaphors of service and relationship in ways that are not always healthy for assistants. As one long-term assistant explained: “It is sometimes seen as a good thing in L'Arche to show that you are giving of yourself to others; so, if you are so tired that you become burnt out, it sort of shows that you gave so much of yourself. But it’s not healthy for us.” More work is needed to interpret how particular illnesses in L'Arche may be an indirect way of communicating other messages of distress that are not culturally legitimate (Lock and Scheper-Hughes 1990). Although I address various sources of this issue in Chapters Six and Seven, space limitations preclude me from linking those findings in a coherent statement of the issue.

As mentioned above, I have put greater emphasis on the moral principles and perspectives involved in the L'Arche approach than on their religious origins. This was strategic, in the sense that I aimed to produce a document which would speak to the secular audience of academics and practitioners as well as the L'Arche community. However, it is clear that by stripping the discussion of some of the spiritual language and sensibility, my representation of L'Arche itself is partially obscured. Other academic analyses of the spirituality of L'Arche round out the picture well (Downey 1986, Hyrniuk 2001, Mellis 2002, Sumarah 1996).

With a complex organization like L'Arche, there are many possibilities for future research that could bring new perspectives and disciplines to bear on illuminating and evaluating what L’Arche does. It is more important than ever for L'Arche to think about building a case for the value of its unique approach; the cost-cutting agendas of several provincial health ministries have already led to threats of amalgamation and standardization of care agencies.

The most obvious research direction related to my work is a comparative analysis between caregivers in L'Arche and those in mainstream agencies, regarding their experiences of caregiving, capacity to provide good care, and attitudes towards people with intellectual disabilities. While current L'Arche research indicates that it would likely render a positive view of the L'Arche approach, this has not been compared directly or empirically. Demonstrating greater caregiver satisfaction could assist L'Arche in its recruitment of good people. It could also be used as indirect proof of quality of care, given other similar research studies[iv].

It would also be valuable for L'Arche to commission research directly with the core members. Empirical research that assesses the core members’ perceptions of their quality of life, and the quality of care provided in L'Arche, would give voice to what core members are feeling as a group and establish what opportunities for improvement are available from the core members’ perspectives. Given issues with power imbalance and prophetic interviewing noted in Chapter Two, it would be important for this research to be performed with outside help, from people who are not perceived by the core members to be friends of their caregivers. If this research could be conducted using measures and interview questions that resemble those used in current research on the same issues in the field (for example Brown 1997), it would provide a basis on which to compare L'Arche against other agencies and residential options for people with intellectual disabilities in these areas. This kind of comparative research could help L'Arche in building a case for the efficacy of its unusual approach.

Comparative research on L'Arche from a financial perspective could show whether it is a cost-effective service provision option relative to others available. Preliminary assessments from the Vancouver community indicates that L'Arche would stand up well in this kind of comparison. A human resources perspective could examine the various techniques and processes that L’Arche has developed in regard to consensus-based decision making, a process that includes core members in community decisions and conflict management in a co-operative paradigm.

There are often discrepancies between what assistants expect to give and learn and what L'Arche expects. It may not only be a difference in expectations but in ability as well. L'Arche should conduct research with people before they arrive, after a few months of residence, and even at their exit interviews. Again, in order to elicit candid responses to sensitive questions, outside researchers would be essential. The findings could illuminate how assistants negotiate between the two sets of expectations, and what they are willing or able to give.

L'Arche has undergone many changes in its long tenure in Canada and there are no thorough historical accounts covering the entire period. Many of the Canadian founders are still in contact with the communities and most communities have written and audio-video artefacts still on hand from their founding periods. A solid history, using secondary historical sources and interviews, could thus be constructed.

8.4 Endnotes