P. J. Cushing 2003

2.0 A Statement on Method

“Simply take yourself, in all your singularity, importance, complexity, and love—and multiply.”

Annie Dillard (1999:47)

2.1 A protean project

Describing human experience is a formidable task, and the reflection of novelist Annie Dillard points to the risk of misrepresentation when a writer loses track of the distinctiveness of individuals in the process of generalizing. General accounts and large numbers can lead to a loss of perspective and “compassion fatigue… At what number do other individuals blur for me? Vanish?” (Dillard 1999:131). The ethnographic methods I employed were designed to hold onto both sides of the story: the lives and creative agency of particular caregivers, as well as broad patterns in their collective response to the L’Arche cultural system. I observed and examined how the caregiving services are organized in L’Arche, and how caregivers behave in their natural settings, but also asked the caregivers individually about their perceptions and experiences of daily life in the homes. Eventually, I set this data within a broader operational context using secondary sources from a literature review in chapters 3 and 4.

In this chapter, I discuss the original and eventual research design for the project, and key issues that I encountered in the process. Section 2.2 traces the trajectory of the project from my original inspiration to the early negotiations for a research site and subsequent shifts in my focus. In section 2.3 I discuss my principal method, participant observation, and three key themes that orient my approach to anthropological fieldwork. The discussion in section 2.4 turns towards defining and evaluating the specific methods I used and their place in the overall research design and chronology. The final section (2.5) addresses two concerns that emerged over the course of my fieldwork: the ethical issue of obtaining informed consent for research from people with intellectual disabilities, and problematic aspects of conducting research in one’s own culture. Ethnographic fieldwork is a highly variable research method. My aim in discussing issues I faced at this site is to make the strengths and weaknesses of the process transparent.

2.1.1 A brief theoretical orientation

My primary theoretical approach in this ethnography is interpretive anthropology, combined with some aspects of symbolic interactionism, and critical ideas from feminist and post-modern theory regarding reflexivity, representation, voice and fieldwork that respects the people being studied, not objectifies them. These latter critical ideas are further elaborated in section 2.3.2.

A straightforward starting point for defining the goal of anthropology is: “to describe and explain the regularities and variations in social behaviour,” or cultural description, and this is accomplished primarily through ethnography (Spradley 1980:13). An ethnographer attempts to describe and analyze “the meaning of actions and events to the people we [anthropologists] seek to understand” by studying “what people do, what people know, and the things people make and use;” cultural behaviour, cultural knowledge, and cultural artefacts (Spradley 1980:5). Geertz (1973b) defined culture as a socially established (shared) system of meaning “in terms of which people engage in social action” (Nanda 1994:56). Spradley suggests that culture can be explicit (what people can tell you) or tacit (what they know intuitively but most can not articulate), but either way, “culture is the acquired knowledge that people use to interpret experience and generate behaviour” (1980:6-7). So in this minimal definition, culture is learned and shared.

Many developments in theory since the early 1980s have challenged the definition and usefulness of the concept of culture for building cross-cultural understanding. In the post-colonial period, feminists and post-modernists in particular have challenged anthropologists to reflect critically on issues related to power asymmetry in the ethnographic process: voice, representation, inclusion and exclusion, exotifying and essentializing difference, and the objectification of research subjects (Clifford and Marcus 1986; Marcus and Fischer 1986; Abu-Lughod 1991). A full review of these issues is beyond the scope of this thesis, but I discuss those arguments that are salient to my project in section 2.3.2 on “partial knowledge.” For now, I briefly outline the main idea of interpretive anthropology.

Symbolic interactionists posit that cultural meanings derive from social interaction and thus they “seek to explain human behavior in terms of meanings” (Spradley 1980:8). Interpretive anthropologists believe that “human behaviour is symbolic: It has meaning—it signifies something—to those who engage in it” (Nanda 1994: 56). To understand these cultural meanings an anthropologist observes people in their natural settings since “it is through the flow of behaviour, as social action, that culture is articulated” (Nanda 1994: 56). Interpretive anthropology moves away from a view of cultures as “abstract systems” and encourages a focus on the often “messier,” but fruitful approach, of examining “the experience of being a member of that culture” (Marcus and Fischer 1986) [i]. This approach has helped promote an understanding of culture as multi-dimensional, differentially shared among its members, and as dynamic, not static. In this thesis, I show how the L’Arche cultural environment has undergone many changes and continues to change in response to both internal efforts and externally imposed conditions, and also show intra-group differences in perspective and experience among assistants.

The interpretive paradigm fostered many questions about the effect of inherent human biases on fieldwork and interpretations, power asymmetries in our relations with “the other,” and what implications these suggest regarding research objectivity (Nanda 1994: 36). In attempting to grapple with these questions, anthropologists’ professional self-awareness and reflexivity have been heightened. Reflexivity in ethnography means being aware of and accountable for the effect of your personality, culture and feelings on your research and analysis (ibid:37). Throughout this chapter I use reflexivity to elucidate how I enacted the interpretive approach. This discussion provides an overview within which the rest of the more specific sections below operate.

2.2 Negotiating the topic and field site

The general idea for this ethnography grew out of my previous research and experiences, but changed once I chose a research site and began my fieldwork. In this section, I trace the trajectory of the project from my original inspiration, to the early negotiations for a research site, and finally the proposal and agreement struck with L’Arche. The multi-sited fieldwork lasted just over a year, and in the end comprised many research methods and sites of engagement, under the organizing approach of participant observation. Methods are elaborated in section 2.3.1 on participant observation and in 2.4 on research design.

The topic for this project originally grew out of my interest in questions about how people change themselves, why they want to or think they should, and what cultural beliefs are at play in helping to direct how they think they should or could change. In previous ethnographic research, I examined similar questions about personal change through applying the rites of passage model (Turner 1964) to self-narratives that I co-produced with students, before and after their three-week experiential wilderness courses at a school where I worked, called Outward Bound (Cushing 1997a, b). Since Outward Bound’s primary objective was to promote personal development, I was interested in how their local cultural belief system encouraged and supported people towards that end. I examined three dimensions of the efficacy of the program in encouraging personal change: the content or nature of change, intensity or degree, and longevity[ii]. Many students experienced positive short-term effects like greater confidence, empathy and openness, but afterwards, even those who indicated that they were trying, seemed to find sustaining these changes very challenging.

Based on interviews three months post-course, I argued that there were five contributing issues to this problem, and one of those is the most salient to the origins of the present ethnography[iii]. Briefly, one key issue was the lack of a compelling motive to sustain the change(s); their own desire was simply not enough to inspire them to the extra effort required off-course to overcome blocks such as peer pressure and absence of support. One student, Jeremy, who was still trying at the time of the post-course interview, disclosed that he was tired of letting his mom down with his delinquent behaviour, how he was desperate not to end up stuck in his hometown, and how much he wanted to do something more with his life than attend house parties. The source of those ambitions is less relevant here than the role they played in bolstering his desire to sustain his changes. These comments represent a set of broader, long-term, and partly other-oriented concerns that seemed to be buoying his spirit and providing him with a meaningful rationale for continuing to make an effort to grow. This insight led me to consider whether Jeremy’s situation was common. My initial research problem for this study was the following: Are personal change projects enhanced or prolonged when interwoven with relational and existential goals, or guiding purposes?

I wanted a research site where I could delve further into this question. I was particularly interested in whether a person’s goals for being involved with social change or social good projects could have a spin-off positive effect on their capacity to develop and sustain personal changes in everyday life. My personal agenda was the hope that if I could illustrate this relationship, it would provide a compelling motive for people to get more involved in volunteer and community work. L’Arche met my research needs since its philosophy endorses both a socially progressive approach to caregiving, as well as the importance of caregivers’ growth towards maturity. I first learned of L’Arche in 1998 in a fortuitous conversation with a friend, Ann Osler, who is a long-time associate and supporter of the Daybreak community.

After a series of inquiries, I was invited by the community to dinner at one of their eight homes in October 1998. My nervousness was alleviated by Russell, an elderly core member, who gave me a house tour replete with detailed stories of his family tree and his connections within the church! A young assistant included me in dinner preparations, and later one of the long-term assistants shared her thoughts and suggestions about researching personal transformation based on her experience in L’Arche. The casual, comfortable manner and tone of the evening allayed my concern about feeling uncomfortable in a religious community.

Over the next two months, I met and discussed options for the project with two long-term assistants, Matthew Marosszeky (Human Resources) and Carl MacMillan (Development and Outreach). Both men helped me to understand more about the organization, and about being sensitive to protecting the privacy of the people with intellectual disabilities in their homes. Together we developed a mutually beneficial plan by combining my research objectives with questions that were of interest to the community. For example, L’Arche communities nationally were interested to know more about assistants’ reasons for working there, in order to assist their incipient recruiting efforts.

Given the research site, I developed other goals, such as understanding the fields of intellectual disability and caregiving, and how L’Arche was situated within them, as well as how their position might influence people’s decisions to become a caregiver there. These factors are elaborated in Chapter 3. Carl and Matthew’s prime concern was to minimize the disruption my presence would cause to people’s home lives, and achieve an acceptable balance between individuals’ privacy and my ability to access various people and situations in L’Arche. They obtained approval for my proposal (see Exhibit 2.2) from community council, which allowed me to be trained as an assistant and to be able to participate actively in the homes in that capacity part-time. I was given a bedroom upstairs in the Big House, which also houses the community’s main office. I was officially “connected to” one of the regular community homes, Shalom House,[iv] which means that I was there for most meals, social activities and caregiving tasks. Assistants are always connected to a particular home, which facilitates familiarity with care routines and interpersonal connections. I lived at L’Arche four to five days a week, and at my home for the rest. It was agreed that taking regular days away would help prevent me from becoming overly drawn into the needs of the community at the cost of the research. Initially, the time was split between two days to be scheduled as an assistant, and two to three days for interviews, surveys, observation of meetings, assisting on committees, and field notes.

I was trained as an assistant in how to spend social time with core members, do personal care and health/medical routines, household chores, and other outings like church, shopping or going for coffee. After a few months, I shifted a greater share of my time towards those aspects of the research that involved less active household participation, such as interviews, and so reduced my in-home assistant commitment to roughly one day. Still, since I took all meals with Shalom House, I continued to spend considerable time there in a less active form of participant observation, and simply for fun. I was also involved in committees and meetings outside the home in order to help out, but also to be involved in different aspects of community life for observation purposes. My formal interviews began after a few months once I had established a familiarity with community life. Finally, I was given permission to do short-term, comparative fieldwork in eight other Canadian L’Arche communities that differed from Daybreak in various ways (age, size, region, language, and orienting religion)[v].

After a short time living in the community, I was aware that some assumptions of my research problem did not jibe with how the assistants understood and acted in their world. Assistants on the Shalom House team were especially helpful in pointing out my assumptions about them, their lives and what was important to them that were inaccurate as far as they were concerned. Although I initially resisted their direction, with greater experience in the community I came to see the relevance of their insights through findings which surprised me. One surprise came around key terms like personal change and social good. Several interviewees for example, insisted (though not in so many words) that the personal change that they were most proud of was learning to “be myself” or getting back to “my old self,” or even learning to be content just “being” or being alone. None of these squared with the typical terms of personal change literature with their additive or developmental notions. Another insight around change was that it seemed to happen almost as a side-effect, or requirement of other goals and practices. Some explanations implied that while in retrospect they felt they had grown or changed as an assistant, at the time, the issue and the process of change had been painful and not something that they had sought.

It is not uncommon for anthropological definitions to be derived in an ongoing, inductive manner, as new information from informants and insights arises from fieldwork (Barrett 1996:220) (see for example Pool 1991). For example, assistants resisted my inference that they were sacrificing self-interest to do this socially beneficial work; instead, they insisted that they received as much as they gave up. This is not to say that I took their statements about what they do and why only at face value, which would be naïve. But participant observation and social engagement revealed that these were not merely image-oriented claims; they reflected important aspects of the moral order and theology of L’Arche, and of the processes of everyday life there.

Although I continued to gather information on personal change and the cultural construction of disability, I eventually broadened the scope and nature of my research questions to include why assistants chose to be in L’Arche, and what their experience there was like. I could access both their reported experience in interviews, as well as observe their conduct and experiences firsthand. Although also concerned with individual assistants’ experiences in L’Arche, I became interested in patterns to their collective response to the process of socialization into this new sub-culture: What specifically did people respond to, or resonate with in the messages and daily practices of L’Arche? What did it mean to them to be there, and to live according to the theology of L’Arche?

In his classic discussion of religion as a cultural system, Geertz supports this genre of research on the meanings and symbols that comprise religion, in addition to the common focus on religious behaviour (Geertz 1973c:125). He argues for more detailed, empirically-grounded analyses of how sacred symbols actually accomplish the mediation of meaning in people’s daily practice, that allows religion to “miraculously” achieve “an aura of factuality” about its particular ethos and worldview[vi] (ibid:89-90). To loosely adapt Geertz’s phrase, in retrospect, I wanted to examine how people in L’Arche produced their faith or belief in L’Arche theology and approach to care, as they practiced it (ibid:114).

2.3 Orienting themes and method

There are many ways to conduct fieldwork and to construct ethnography. The extended and extensive nature of fieldwork, and participant observation in particular, mean that there are innumerable small decisions and judgements made by the ethnographer every day regarding what kinds of observations to include or exclude and how to interpret differential responses of the subject group towards the ethnographer. In an attempt to make the process more transparent, I define my main methodological approach, participant observation, and outline three themes that animate and orient my personal approach to this method. I conduct fieldwork under the assumption that all knowledge is partial, which implies that a researcher’s perspective is but one among many possible ones. As such, I try to remain consciously open to persuasion by what informants believe and tell me about their worlds and how to make sense of them, albeit with a critical awareness. Through experiential learning I was exposed to a similar process of socialization into the unique L’Arche ethos as the assistants. This facilitated an understanding of how they experience L’Arche as a “moral order,” not simply an agency (Kleinman 1995a: 117).

2.3.1 Participant observation in the field

Fieldwork is “the firsthand, systematic exploration of the variety of human cultures by anthropologists” and ethnography is a written account of that exploration, usually about one particular society or group (Nanda 1994:23). Although sometimes used interchangeably, “All participant observation is fieldwork, but not all fieldwork is participant observation” (Bernard 1994:137). In other words, people can be doing fieldwork, that is, going into the field to gather data and observe, without being participants. Fieldwork and participant observation both include a range of data collection methods (interviews, checklists, questionnaires, etc.), and is largely open-ended and inductive. Fieldwork concerns how people act and talk in their natural settings.

Although participant observation is a “foundation of cultural anthropology” (Bernard 1994:136), there are different ways of describing its nuances and key features. Below, I include several variants. Bernard and Spradley specify degrees of participant observation, and evoke a sense of how it differs from regular observation, while Barrett names the analytical elements of the process. They are paraphrased except where there are quotation marks.

A participating observer goes to the field, hangs around, listens and talks to people like nurses, but does not do the work of a nurse. An observing participant becomes qualified to do what his or her subjects do, like become a jail guard, then actively does the same things as them, (part-time) while also observing. Subjects should be informed of your research (Bernard 1994:138-9).

The four levels of participation are: passive (spectator), moderate (disengaged role), active (do what they do), and complete (go native, or research where you are already a native). Non-participative fieldwork could involve observing at a distance, email, or interviews (Spradley 1980:58-62).

The active participant seeks to do what other people are doing, not merely to gain acceptance, but to more fully learn the cultural rules for behaviour. Active participation begins with observations, but as knowledge of what others do grows, the ethnographer tries to learn the same behaviour (Spradley 1980:60-1).

From the time of Malinowski onwards, anthropologists have proceeded in the same rough fashion: gathering data, getting hunches, checking them out, generating tentative hypotheses, rejecting them as contradictory data emerge, arranging their data into categories, searching for themes and patterns, and conducting comparative research (Barrett 1996:215).

My dominant mode in the field was as an active or observing participant, but at different times I was also engaged in the other modes, with the exception of “complete.” In a recruiting meeting, or in the home for example, I was actively participating and had a role and responsibilities to fulfill. When I attended an all-assistants meeting in a new community however, my involvement was moderate, since I usually did a presentation of my project at the meetings, but was otherwise simply observing and remained disengaged from the meeting issues. In all of these modes, a participant observer attempts to become “explicitly aware” of the environmental details and behavioural patterns that people tune out in regular life (Spradley 1980:55).

I also engaged in all of the grounded, analytic activities that Barrett insists need to be an integrated part of the fieldwork. Since this was my first major project as a full-time, long-term, participant observer however, I do not think I used the reflection tools as adequately as I could have to narrow my topic down while still in the field (Barrett 1996:190). I invested substantial time and energy in gathering data about a wide variety of situations, which was fruitful, and also a way for me to give something back to the community. In retrospect, I see that this broad perspective and empirical breadth came at the cost of depth and focus in the latter half of the fieldwork. My notes at the mid-way point of fieldwork reveal that I was considering the change in focus, but I did not formally revise my questions, and redesign my methods to ensure adequate data would be gathered on the new questions. Fortunately my field was not far away and I was able to have several additional interviews and informal conversations with research participants during the writing stage.

Simply asking people for their own account of what they believe and do and why, can also be highly instructive and I did this extensively in interviews as I outline in section 2.4.4. Still, if conducted thoughtfully and ethically, participant observation can yield rich and different kinds of data. Participant observation produces an unusually wide variety of data types and helps a researcher develop an intuitive understanding of a culture and form “sensible” questions (Bernard 1994:140-43). Research shows that 35-50% of what informants report about their behaviour is not true (Bernard 1994:114)! Since people usually try to present their best selves in self-narrative or self-report, methods that track actual behaviour provide a different perspective (Wikan 1995:265). Participant observation helps illuminate “the difference between what people say they do, feel, and think, and what kinds of action they take.” (Nanda 1994:29).

My final point about participant observation relates to ethics and privacy. If the description of this method thus far sounds potentially intrusive, that is not inaccurate. All of the authors I have discussed here mention the necessity of subtle deception and obfuscation of aims that many ethnographers engage in, in order to put their subjects at ease and achieve access to “back stage” information. Ethnographers have an ethical responsibility to disclose research intentions to their liaisons and participants, and I did this regularly in homes, interviews and group meetings. When the written report includes elements of analysis that are not explicitly part of the original proposal for the research, as is my case, it seems reasonable to at least discuss the changes with the liaisons. My liaison has read the entire thesis and others in leadership at L’Arche have read different parts during the writing process, including the final draft. All interviewees were given an opportunity to review the thesis and provide feedback generally and for passages where they have been quoted. Participants were invited to input on both my accuracy and interpretations (see survey[vii] in Exhibit 2.4). Since they have encouraged me to write honestly about their organization, it has been a constructive process so far.

2.3.2 Representation and multiple, partial, situated perspectives

“Ethnographic truths are thus inherently partial—committed and incomplete.” (Clifford 1986:7)

With that famous dictum, Clifford urged ethnographers to take certain limitations of fieldwork and writing seriously. The crises of representation, realism and difference in the discipline are forcing each anthropologist to consider how they are positioned in the field through personal history and commitments, and how that circumscribes what they see and choose to focus on. An anthropologist “seeks and highlights, notices this but not that” (Peacock 1986:66). Methodologically, I tried to mitigate this mono-perspectival tendency by incorporating different ways to participate and observe in the community, and interviews with a range of people in different L’Arche communities. This is not to imply that I established an all-knowing perspective; I occupied a grounded, partial position along with others, and was implicated in their world through relations and professional commitments[viii]. Although having multiple experiences and perspectives does not guarantee better understanding, it does nourish critical insight by bringing to light counter-examples, internal conflicts of interest, and the actors’ interrelations, which can in turn, illuminate “what is at stake for particular participants” (Kleinman 1995a:98).

Cultures or particulars? Difference or similarity?

In this section, I review issues of representation that I tried to mitigate in the field, or which emerged in the field. These issues often begin with questions about how to define, study and represent the cultural. One polemic against the traditional anthropological sense of culture argues that it tends to exaggerate inter-cultural differences and down-play intra-cultural differences by presenting cultures to have “homogeneity, coherence, and timelessness” (Abu-Lughod 1991:154). Indeed ethnographers have seemed reluctant to show differences, disagreements, and change among members of a cultural group[ix]. Instead, Abu-Lughod calls for ethnographers to attend to the equally important project of finding similarities and common ground on which to build cross-cultural understanding (Abu-Lughod 1991:154). I tried to follow this orientation in my writing. For example, in Chapter 5 on assistants’ motives for joining L’Arche, I try to present them as individuals and whole actors, so that parts of their lives and beliefs might resonate with the reader’s own experiences. Further, I try to de-mystify L’Arche in Chapter 4, by dealing with the particulars of Vanier’s journey to founding L’Arche, and revealing the familiarity and universality of his hopes and fears, rather than reifying him and L'Arche.

Abu-Lughod’s solution for how to enhance attention to cross-cultural commonalities instead of differences is “ethnography of the particulars” that takes as its subject the changing lives of particular people and relations, in particular places and times (Abu-Lughod 1991:149). Two factors inhibited my ability to construct the whole thesis as an ethnography of particular people in particular situations within the culture in the evocative way that she did (Abu-Lughod 1993). When my analytical focus shifted away from the self-narratives of change at the writing stage, I found that the data I had gathered on other areas of daily life did not include enough detail on the movements and challenges of one or two assistants in one community to write thick, multi-scenario accounts of the same people. Since there are fewer roles, and varieties or classes of experience in L’Arche than in a full-scale ethnic group such as she studies, I feel that my broader account is not therefore weak. Still, an analysis that more systematically separates out the particular experiences of short-term and long-term assistants, a sort of “class” analysis, could yield interesting insights.

Part of the reason that I did not gather detailed particulars was my perceived conflict between gathering detailed ethnographic particulars about two or three people and respecting their privacy—a privacy, I hasten to add, that they had the power to insist on. I was never unaware that the community could easily ask me to leave if some assistants felt that my inquiries were inappropriate[x] (see also Pool 1991:68). I was thus grateful to my housemates for agreeing to let me partake so intimately in the ups and downs of their home life, even though this compromised their privacy—a sensitive concern in L’Arche[xi]. Barrett’s research suggests that this feeling of vulnerability among subjects of qualitative research is not uncommon or unfounded (1996:197). I thus made a conscious effort not to track all daily movements and challenges of my housemates while still attending to patterns in use of time, core member-assistant interactions and decision-making processes[xii].

Partial and co-constructed truths

Anthropologists’ privileged role as representatives of “the truth” about those they study has been robustly challenged. Criticism has been levelled at the “culture as text” metaphor and the inference that anthropologists are better positioned to “read” that local text, than the locals themselves. Post-modern and feminist theorists point out how the textual metaphor obscures the fact that power asymmetries mean that cultural knowledge is differentially shared and understood within the cultural group, and that therefore anyone in it, including the anthropologist, can only ever speak from their own positioned, and thus inevitably partial perspective (Clifford 1986; Narayan 1993:678). New metaphors emerged to “reconceptualize cultures as fields of overlapping and juxtaposed discourses” which emphasize that anthropological discourse is one among many possible partial truths, and is not superior to a particular native’s angle (Lambek 1991:47). Proponents of this more modest role for ethnography insist that it be “self-conscious, serious partiality” not relativistic (Clifford 1986:7). The ethnographic voice can contribute to the polyphony through the fresh perspective and different, if equally resilient, commitments and interests it brings to bear on issues than locals hold.

These partial truths were also revealed to be co-constructed with informants, rather than “discovered” solo by the anthropologists’ cleverness. Notions of accuracy and a single truth are misleading because they ignore diversity of locals’ and informants’ perspectives. They also falsely assume that segments of cultural knowledge are “there, ready in the natives’ head to be called up and expressed in discursive statements” and “collected” (Pool 1991:70, 75-6) (see also Tyler 1986). Instead, some have suggested ways to be clearer about how ethnography results from an ongoing co-production of cultural knowledge about how a particular group of people makes sense of themselves and others (Fabian 1990; Pool 1991:75-6). Dialogical anthropology and multi-vocality have been proposed as ways to redistribute authorial power and improve ethnographic texts’ capacity to convey cross-cultural understanding. While such formats are not perfect, they do evoke a sense of the fieldworker’s position, her native concepts, confusion, relationships, and management of conflicting data (Pool 1991:72-3).

I am drawn to the rich possibilities of multi-vocal projects. It is worth noting that doing so is not always solely up to the anthropologist. I tried to share power in my fieldwork, and it was often fruitful, but a few factors worked against realizing it as fully as I had hoped. Most assistants were very busy and it would have been impossible for one of them to spend extensive hours with me, answering questions and co-interpreting interviews, like a typical “key informant.” While there were about three people with whom I did have extended discussions informally about the community and my research during and after fieldwork, they did not have access to the interview material. In addition, while most assistants were highly amiable, co-operative and informative, they are not members of an oppressed group, yearning to have their voice or their story heard. They thus had less at stake to motivate them to be highly involved in my project than perhaps an indigenous person whose rainforest is being destroyed, or a psychiatric patient who wants to explain the iatrogenic effects of institutionalization. I therefore tried to spread out discussions of my many questions and theories among a handful of assistants whom I considered insightful and honest, so as not to overwhelm any one person.

I did initiate a collaborative writing project with six women assistants and four core members that began with a jointly-conceived format that would minimize my mediation of their voices to produce a polyphony of experiences in one article. I would provide the necessary background and weave their independently-conceived and written sections together at the end[xiii]. While the assistants were enthusiastic and encouraging, it became clear that they did not want to actually write their own sections. Competence was not the issue; they were all university-educated. They simply wanted to share their stories, and have me write them up with any necessary context and interpretations. They seemed genuinely unconcerned about giving up control to me (when I mentioned it), since they knew me, we had agreed on the theme, and they could edit the written product. Informants are not necessarily interested in, or ready to commit time to such collaboration (Barrett 1996:195). Other researchers (Acker et al. 1983:429) found that “they could not avoid assuming the privileged position of experts. In fact, the women in the project” insisted on it (Barrett 1996:196). The article was published with explicit reference to assistants’ contribution but no pretence to multiple authorship (Cushing and Lewis 2002).

2.3.3 Openness and engagement in the field

“After all, what would be the value of the passion for knowledge if it resulted only in a certain amount of knowledgeableness and not, in one way or another and to the extent possible, of the knower’s straying afield of himself?”

(Foucault 1990:8)

The choice of participant observation for this research was not an accident; it was a way to get underneath a superficial understanding of the life of assistants in L’Arche. I felt that fieldwork and interviews alone would not allow for that. I also wanted to experiment with what I perceived to be key advantages of participant observation over other forms of research: its iterative, or open-ended nature, and its attempt to translate deep, experiential understanding of a cultural system into analytically useful insights. Jackson proposes that ethnography is unique because it involves the “turbulent merger” of different kinds of knowledge: rational inquiry and intense, engaged experience[xiv] (Jackson 1995:170).

Initially, I hoped that participating would improve my analysis, but I did not imagine how it could connect me to the people I was interviewing (Mohanty 1989). Nor did I consider how I might grow (other than in professional skill), or learn from people in the field. Once at L’Arche however, I did become close to a few people there, and certainly grew, and became personally invested in the overall project of the communities. When I cried in a meeting where I learned that three of my housemates would be leaving the house, I felt that perhaps I had become too involved and might lose perspective. Other researchers, however, suggest that forgoing objective distance and becoming engaged, vulnerable and open to personal change in the field is vital. It moves an anthropologist beyond relativism and “sentimental charity” to genuine understanding (Mohanty 1989:10-16; Jackson 1995; Scheper-Hughes 1992:24; Narayan 1993:680).

The surrender to engagement and experience did not necessarily feel more comfortable or safe, especially as I still had to negotiate multiple identities in the field such as researcher, caregiver, consultant, critic, and friend. Remaining in character as a “researcher” does afford one a certain safe distance from questions that one does not want to answer, relationships that entail responsibilities and challenges to one’s credibility. Becoming a participant in community life opens you up to all of these. One assistant from another house who had a rudimentary sociology background, came to our house for dinner more than once, insisting that I explain my hypotheses and methods in detail, only to (supposedly playfully) suggest that I must have other hidden agendas about “stereotyping” them. Being open to changing both my research ideas, and in some ways, myself, was at times also arduous, exhausting and disorienting.

This disorientation followed by re-orientation was important to ensure that I didn’t overlook things that seemed familiar to me given that I was doing anthropology “at home.” It pushed me to become aware of at least some of my false assumptions. One such example arose in an informal conversation about personal change with Raoul, a short-term assistant. To summarize, I had assumed that all assistants came to L’Arche with an idea about one or more ways in which they might like to grow. Raoul disagreed based on his own experience; he insisted that he could not have planned to work on particular things at L’Arche because he did not know enough about it. It was only after living there that he could seriously assess how this environment and work could assist him to grow. While this did not necessarily apply to every assistant, his thoughts certainly problematized my assumptions around personal change and motives.

2.4 Research plan and discussion of fieldwork methods

“Life in the field is itself fragmentary, not at all organized around familiar ethnological categories such as kinship, economy, and religion.”

(Tyler 1986:131)

This ethnography is the fruit of a myriad of research settings and tools. As was described through section 2.3, I hoped to experience, observe and listen to people talk about different types of activities in the communities, and the diverse ways that people choose to engage in them, and the meanings they associate with them. In this section, I outline those elements and tactics of the research design that were planned, as well as unanticipated opportunities for particular sorts of inquiries that emerged in the field. The elements were designed to achieve a balance between assistants’ explanations of their experiences and their (diverse) perceptions of the meanings of symbols and processes in L’Arche, and what I could observe was actually happening on a day-to-day basis. Below, I outline the main elements of this multi-sited, polyvalent approach and their chronology. I begin with a chronology of the entire fieldwork period for perspective, followed by two sections on participant observation in and outside of the home. I close with a discussion of the formal interviews conducted with assistants in all communities.

2.4.1 Fieldwork chronology

The principal component of this ethnography was an extended period of participant observation with one L’Arche community, Daybreak. This time was complemented, however, by shorter stays in eight other communities across Canada with the main aim being to test some of the insights gained in one community to see if they were applicable to various L’Arche settings. The latter component was strongly endorsed by my liaisons at L’Arche given their awareness of regional variations as well as other axes of difference amoung the communities.

The total fieldwork time stretched just over a year beginning in February 1999. My primary research site and home base was at the original and largest L’Arche community in Canada, Daybreak, which has a section in Toronto, Ontario with four homes and the original section north of Toronto with eight homes. I lived in the northern section of Daybreak for almost nine months in total, with visits and interviews in the southern section (see Exhibit 2.1). The balance of fieldwork time was spent organizing and travelling to seven other L’Arche communities across Canada for approximately one week each. In them, I observed the diverse ways that the L’Arche mission can be enacted and lived, which helped to strengthen the research relevance. I was also able to test and re-work certain insights that I had developed at Daybreak. These communities varied in size, (from three to eight homes, with two to six core members in each home), in age of community (10 to 30 years), and in regional ways (government regulations and funding, language, cultural and religious differences). The particular flavour of each community is also strongly influenced by the individuals that comprise them, from core members and assistants to the leader.

The eight communities that I visited in addition to Daybreak included: Ottawa, and Toronto, Ontario; Trois Rivières and Hull, Quebec; Wycocomagh (Cape Breton) and Antigonish, Nova Scotia; Burnaby, British Columbia; and Calgary, Alberta. These short-term visits occurred after I had lived at Daybreak and were opportunities to refine my theories and test their relevance in different L’Arche settings. Prior to the visits, I worked with the directors and their assistants to arrange interviews with a variety of people and to set up a schedule of attending different meetings, prayer services, social events and also house visits during my time there. I lived in the communities and took most meals in the homes, including socializing, cooking and clean-up afterwards. I attended their all-assistants or community meetings in order to introduce the research, solicit feedback, and openly signal myself as a researcher, not just a guest. I also attended a sample of house and team meetings, and community events in each community depending on their schedules. The core components of these visits were the formal interviews that I conducted with people whom the community leaders worked with me to choose and invite. The five categories of people I wanted to interview were: the community leader, one to two long-term assistants, a short-term assistant (one to two years), a board member and a former assistant.

These shorter periods of fieldwork were highly useful for various reasons. Although the trust built up in extended fieldwork is often discussed, less has been said about the advantages of short-term visits for someone already familiar with a culture. My limited time in the other seven communities meant that in some ways, I had neither a history nor a future with them. This served two purposes. First, I was not seen to be aligned with any one group, person, or attitude in the community and this “neutral” status meant reduced barriers for people to engage openly with me in discussions and interviews. I was struck by the richness of these interviews given that the interviewees had often only met me moments before. In extended research, one often forms alliances (intentionally or by default due to gender, class, etc.) that hinder or restrict one’s access to other people within the sub-group, who dislike or differ from your allies or sponsors (see for example Abu-Lughod 1993; Duneier 1999). Second, since my time was limited, my impression was that people had a greater sense of urgency about conveying their thoughts to me. On these visits, several people sought me out to share stories about L’Arche, positive and critical, or to teach me about things that they felt I needed to understand better. Certain others were highly candid in interviews about their experiences and concerns with L’Arche, in spite of their overall admiration for the organization. There could be a range of reasons for the urgency and openness, but one seemed to be that people felt greater freedom to be candid knowing that I was not going to be there every day for another year.

2.4.2 Distribution of time at principal research site

“Ethnography … holds the possibility of a way of knowing more valid to the dialectical structure and contingent flow of lived experience than reductionistic forms of knowing that by definition distort the existential conditions of life.”

(Kleinman 1995a:99)

The largest part of the ethnography was conducted while living at the northern part of the Daybreak community. In this section, I outline the ways in which my time was spent there, divided between participant observation inside the homes, and in other settings in the community. Interviews are discussed in section 2.4.3. I discuss becoming familiar with the community and learning to listen to their suggestions about what was important to them.

On my first night sleeping at the Big House, I found a hand-drawn welcome sign hung on my door as is the L’Arche tradition. Over the next several months, the two other assistants living there posted various other signs, playful and serious about rules of the house, requests of me, and welcomes. A later tongue-in-cheek sign for example read: “Big House Rules: No smoking * No sex * No long phone calls.” I painted and decorated the room and many people from the office downstairs dropped by to welcome me and see the colours. Although I did presentations to various configurations of community members to explain who I was, and what I was doing there, I think that small things like casual conversations, painting the room, or cooking a nice meal were in the end what really positioned me in people’s minds. I suppose research can seem distant and curious to what people live. When I concluded my presentation by saying, “So I guess I’d just like to understand better what L’Arche is all about,” one long-time core member, Frank, got up and teased “Oh good, Pamela, because I’d like to understand it too!”

Originally, I wanted to use the first few months to familiarize myself with the cultural norms of the community through participant observation in the home and community. As it turned out, I was also involved with other projects, as I discuss in the next section. Still, I spent most of my time in Shalom House. After roughly two and a half months I began to conduct my formal interviews, and spent slightly less time in practice of care at Shalom House. My participant observation mainly took place at Shalom House where I became a part-time house assistant for two days a week. This meant being scheduled to do the direct labour of care or tasks component of this occupation. As one of the primary caregivers in the house, I had to undertake chores as well as take time to simply be with the core members socially. I was also involved in the latter during many non-scheduled times, and this kind of hanging out is both enjoyable and a skill. As Bernard notes, learning to be with people and listen well without jumping into the questions is vital to understanding the processes, norms and meanings of your site (1994:151). The tasks of caring centred on the personal health care and daily routines with core members but also included cooking and serving dinner meals, general house cleaning/laundry, accompanying people to doctors or church, shopping and miscellaneous errands in the house such as making cards or going for walks or swims with core members for exercise. I was given basic training in areas of core member hygiene, safety and medical care.

Field notes are essential ways to record close observations in the field. I was intentionally obvious about taking field-notes in order to remind people that I was doing research, since I was otherwise indistinguishable from my subjects. I found the note-taking method of quick jottings in the moment to be socially awkward and thus ineffective in informal settings. People seemed to stop doing what they were doing when I started writing. I did still use this method during meetings and group events. I had a mid-size, five-section notebook to record various types of data whenever a comfortable opportunity could be found. I had detailed descriptions of goings on, conversations, interactions, or scheduling of time. If I was just observing a meeting or event, I recorded descriptions in the moment, but otherwise I did this from memory soon after the interaction or conversation. At night and at the end of each week, I recorded some interpretation of those descriptions. I also had sections in the notebooks for general reflections, new hypotheses, stories, and interview notes and reflections.

I learned how helpful it could be to be responsive to feedback from assistants about the method or research focus. Early on, for example, the Shalom House team suggested that if I really wanted to understand how assistants experience L’Arche, then I needed to become more grounded in the daily rhythm of the home. They felt that I was missing things because of external projects at the office that fragmented my attention and energy. At the outset, I was prone to think that the “real action” would be happening in the offices and meetings. Later I understood that certain kinds of action do of course happen in the meetings, but that the home life was without question at the heart of why the experience was powerful for people. Following their suggestion made an immense difference; I found that the quality of my relationships in the home improved and I began to enjoy the experience and people more.

Although being involved in activities outside the home was sometimes distracting, it was also an effective way for me to see how the L’Arche philosophy was or was not lived out in the practice of meetings, committees and decision-making. Others have reported on the personal and professional value of establishing multiple sites of engagement while in the field (Bernard 1994:155). My main external activities were working on committees and research surveys. The three committees I partook in were recruiting, marketing and training. I was able to become involved in them because of my prior work experience in those areas. Although my initial intent was to be quite involved in them, the advice from the Shalom House team directed me not to get too involved there at the expense of deepening my experience in the homes.

In tandem with the recruiting committee, I designed and executed a mail-out research survey to the 12 summer interns for 1999 before they arrived (see Exhibit 2.3). This methodological tool was intended to establish a sense of how assistants would describe why they were coming to L’Arche, and what they hoped to get before they actually got there. As I discuss in Chapter 5 below, once assistants have been in L’Arche for a few months, their descriptions of these things often become highly influenced by prevailing L’Arche norms. Nine out of 12 surveys were returned with complete responses. I discuss the results in Chapter 5, but it is of note that their candid, and often practical responses obliged me to rethink my original conceptions of their primary motives as social justice oriented.

I designed, administered and interpreted another, longer qualitative research survey (see Exhibit 2.2) through my collaboration with a group of long-term assistants at Daybreak who were initiating an innovative new extended training project in Ontario called Growing in the Mission. The training was intended to assist three- to five-year assistants in discerning their vocation and learning to live community life well. There were three one-week periods of training and reflection with multiple instructors or guides as per the model from L’Arche France: Eau de Vie. The committee wanted some objective tool for gauging how useful the assistants had found the project and how they felt about their place in their community afterwards. It was immensely instructive for me both to analyze the results, and to discuss my interpretation of the results with the long-term assistants, and hear what they agreed or disagreed with. I was also involved in conducting a few sessions, given my teaching experience.

2.4.3 Formal interviews

The original research questions that motivated my research centred on the intersection of personal change goals and other-oriented goals of relationships and social justice. It was thus important for me to interview individual assistants about the trajectory of their lives to gain a sense of their particular paths. Interviews are a standard part of ethnographic fieldwork and are a better tool for eliciting private information than large group settings. The interviews were intended to gather a number of self-narratives about what different assistants’ lives were like before they came to L’Arche, and how that led them there, as well as what their experience in L’Arche had been like. In this section I discuss the interviews, their advantages and disadvantages, and some weaknesses of my interview design and style.

The inclusion of research participants’ self-narratives in ethnography is one way to share authority with them. Narayan suggests that the narrative stance is ethical in that it can shift the representation of participants from (mere) informants about cultural data to “subjects with complex lives and a range of opinions” (Narayan 1993:681). This stance reminds the writer and reader that what people tell the researcher is not an unsponsored truth, but a positioned perspective that is usually coloured by their interests and agendas, including what they think the researcher is interested in hearing (see also Pool 1991). I wanted to elicit a sense of the assistants’ lives that was organized around the markers and themes that they considered important. As such, I used a formal, semi-structured interview guideline with a set of topic areas.

The advantage of this method of interviewing is its flexibility to be guided by the interviewee’s priorities (Spradley 1980:123-7). I think its casual feel also increases interviewee comfort. Indeed, I found it highly effective as I was honoured with hearing incredible details and moving stories about people’s families, relationships, hard choices and peak experiences. I was moved to tears and laughter by several informants’ stories. Since I have grappled with some of the same issues that many of the assistants talked about, I also grew in my capacity to understand and think about my own experiences through these interviews.

There are three issues with this open-ended style of interview that I discovered upon analyzing my transcripts. First, when I started reading the transcripts out of the field, I realized that my own personal interest in their stories, and in certain issues that they brought up, had led me to allow too much discussion on their pre-L’Arche lives, and on questions of interest to them or me, but which were not salient to the research topic. Because of this, other directly relevant research topics were not discussed in sufficient detail in some interviews. In particular, I found that in the end, I had not gathered even basic census data in many of the interviews about factors such as ethnicity, religion, religious changes, age, years in community(s), number of homes lived in, and so on. This made it difficult for me to do useful comparisons on certain points in the analysis. In future, I intend to be more aware of not letting my, or their, extraneous personal interests take up as much time, even though this often adds to both of our comfort levels and trust. In addition, I would have a structured component regarding basic questions at either the beginning or end of each interview to ensure that basic facts are gathered.

People also led full lives prior to L’Arche and many expressed that it was enjoyable to reflect on them. Towards the end, however, I was beginning to realize that I was going to shift my research topic, and that I was perhaps not gathering enough information on the details of their L’Arche experience. As a likely result of this, I found a few places in my interview transcripts later in the fieldwork, where I was less-than-subtle about trying to redirect the discussion when I (apparently) felt it was getting off-track. In future, I think a better alternative would be to work harder at structuring questions so that the interviewee is clear up front about how much detail I am interested in on each question. In reviewing a few other transcripts, I noted some moments where I challenged an interviewee’s claims of adherence to certain L'Arche “party lines” and pressed them to articulate a notion in their own words. This was my way of trying to unsettle, or get underneath the public story or myth. In retrospect however, an open-ended, casual interview format is vulnerable to allowing this kind of pressing to go further than intended, precisely because of the lack of structure.

Once I had established a basic understanding of the community life, I conducted one-on-one interviews with a range of assistants between May 1999 and February 2000. In sum, I conducted 66 interviews about people’s self-narratives, of which 26 were with people connected to the north and south Daybreak communities, and 40 were with people from the seven other Canadian L’Arche communities. The discussions ranged from one to seven hours but averaged two hours. All interviews were transcribed and translated for analysis. The interviews were distributed as indicated in the following table:

Table 2.1 Interview distribution

	Daybreak (2)	Other communities (7)
Community leaders	2	7
Long-term assistants	9	9
0 to 3 year assistants	6	6
Former assistants	3	7
Board members	2	11
Administrative staff and volunteers	4	2
Totals	26	40	= 66

The sample of interviewees was developed in three ways. At Daybreak many people volunteered after hearing my presentation. I also asked some assistants to be interviewed in order to achieve a representative balance of assistants across the categories of age, gender and tenure in L’Arche. Various insightful people contributed greatly to my understanding of L’Arche outside of interviews. In the other communities, the community leaders assigned most people for me to interview, and I reaffirmed each person’s willingness when I arrived. Most former assistants that I interviewed were recommended to me by someone in the community. I followed the appropriate research ethics guidelines[xv] for research with human subjects. I was as interested in people who seemed to be model assistants as those who were less enthusiastic, competent or well-liked; interviewing people in different positions vis-à-vis the community norm enhances the research by indicating the intra-group diversity, and the kinds of stakes people in different positions have (DeLauretis 1990:139; Barrett 1996:190).

The interviewees were either Canadian or had been living in Canada for a significant period of time (eight to 50 years). Only three interviewees were new to Canada (0 to four years) and I found that they provided helpful perspectives on Canadian priorities and preoccupations. All interviews were voluntary and were unpaid. All interviews were confidential, recorded on audiotapes, and conducted one-on-one in a private location of that person’s choosing. Most were completed in one sitting, but fourteen required multiple sittings due either to length or interruptions. In general, people gave the impression that they enjoyed these discussions and the chance to reflect on their lives and their experience in L’Arche.

A final piece of research, which I decided to include at the end, was a personal evaluation of my work. I sent a survey to each community, for the people I interviewed and lived with, asking them to evaluate my fieldwork presence and interview style in order to help me understand ways in which I might have spoken or acted inappropriately and to what degree people felt that they could trust me with their stories (see Exhibit 2.5). I used their anonymous responses (15) to help discern how I can improve my technique in future research.

Having outlined the main tenets of the research process, it is now important to discuss significant problems and dilemmas that I encountered in the field in order to clarify why certain approaches were necessary, and so that others might benefit from a discussion of the elements at issue and how they were resolved.

2.5 Problematic aspects of fieldwork

Fieldwork is a layered and unpredictable process and invariably presents the anthropologist with problematic procedural, ethical and interpersonal situations that he or she has not considered before, at least in its particular manifestation in that site. In my L’Arche fieldwork, I encountered two central issues that have undoubtedly been raised in other settings and which presented difficulty for me: issues related to doing research “at home” and the problematics of the ethics of consent with people with intellectual disability.

2.5.1 Research at home

Anthropologists working with people in their own country or cultural group face a different set of challenges in the field. “In studying their own culture, anthropologists must try to maintain the social distance of the outsider, because it is all too easy to take for granted what one knows” (Nanda 1994:37-8). Doing research with people with whom I shared many traits and experiences, influenced the research and my experience as a researcher. I discuss some of the effects below.

People doing research in their own culture have a variety of labels applied to them by other anthropologists including insider, native or indigenous anthropologists. Insider anthropologist is “the term applied to anthropologists from dominant ethnic groups who do research at home,” while native refers to those studying their own ethnic minority group and indigenous usually refers to Third World academics studying their own country (Barrett 1996:201). In some ways, you could say that I was an insider since I was studying others, most of whom (although not all) were also Canadian, white, university-educated, middle-class and raised in the church. I shared other less tangible traits with them too, such as an interest in social justice issues, canoeing, soccer and music. On other important axes though, I was quite different; not just in my mind, but in theirs. For example, in a community defined by its attempt to raise the “value of the heart” above the western privileging of intellectual skill, a PhD student is not really seen as being in the same state of mind. In fact, although several assistants had advanced degrees, most of those individuals were not keen to connect with me on this basis, perhaps because of the cultural emphasis on other virtues in L’Arche. Narayan has written about this issue and argues that both anthropologists and our subjects have “many strands of identification available, strands that may be tugged into the open or stuffed out of sight” (1993 :673, 676). Narayan undermines the myth of insider knowledge, arguing that it is based on a misguided assumption of heterogeneity among the group, and it misses the fact that there are always grounds for “sameness and difference” between us and informants (ibid:676-80).

Reports that deal with the methodological concerns of doing research at home commonly claim that familiarity is the source of both advantages and disadvantages—the former being that “they [researchers] have better rapport, greater linguistic competence, and a greater capacity to appreciate the nuances of non-verbal, subjective data. They also are less likely to construct misleading stereotypes of people.” (see also Spradley 1980:161; Barrett 1996:201). On the other hand, this familiarity makes it “harder to recognize cultural patterns that you live every day, and you’re likely to take a lot of things for granted that an outsider would pick up right away” (Bernard 1994:154, 149).

Since most L’Arche assistants are university educated, I found that I did not have any kind of mysterious status or respect just by virtue of my project. Occasionally certain assistants liked to inquire deeply into what philosophical or psychological literature I had used in forming my ideas, often showing me issues with my questions based on their own readings. And in various situations, assistants followed the underlying meaning or assumptions behind my questions closely, and would thereby make their own assessments and judgments of me, and the level of development of my understanding of L’Arche. Their responses would sometimes include not just the content or answer I was interested in, but an additional commentary about the nature of the question, and advice about whether I was on the right track. This contrasts with the reports of some researchers who suggest that the locals or natives take their own cultural assumptions for granted (Spradley 1980:11). In fact, the assistants’ comments were often vital catalysts to my critical understanding of L’Arche.

One issue that arose with participant observation was the difficulty of balancing the participating side of things with the more passive, observing aspects of research. This issue is not exclusive to research at home but was exaggerated due to my overt resemblance to the assistants. Hanging out, observing, taking notes, re-reading and adding to one’s notes in the evening, and quiet reflection are all essential parts of fieldwork, but they do not always look like “work” to those with whom you are living (Bernard 1994:151; Nanda 1994:29). When I was in the home or office and doing one of these more passive-looking tasks, I was often asked to assist with some project or task related to care or the community, or invited to do something social like go for a swim with Donna, a core member. In the house, especially, I found that I had more requests made of me, and I often felt as if I should help more than was probably good for the research. Although the requests were always polite and mostly hesitant, it got so that it was difficult for either them or me to keep up the supposed distinction between when I was officially scheduled to be on or just observing. The impulse also came from me; I often wanted to help anyway, or do someone a favour, and sometimes being involved put me in a better observational position on decision processes or conflict management than if I had been just observing.

Many anthropologists experience conflicting pulls on their time and need to balance multiple roles of researcher, community participant and friend. At L’Arche though, there is an intensification of that pressure since relationships and serving others is central to L’Arche philosophy. In these moments, I somehow felt as if just saying that I supported what the community was about was not enough; my actions would speak louder than words. It was also often the case that I preferred doing the other social activity more than my research tasks. Although the notes and reflections were sacrificed, it did give me an experiential understanding of how caregivers at L’Arche and elsewhere are vulnerable to the pressure to defer their needs in the face of others’ more urgent needs (Kittay 1999:48-53) and how hard it is in practice to create boundaries around your time. In this way, it was vital that I did live in that tension to some extent—trying to do both. The assistants’ role requires a certain surrender of self in learning to “be for others” and it can be a growthful experience. My involvement also made it clear that many situations require compromises or sub-optimal solutions. This highlighted the fact that what the assistants did was not always what they preferred—resource constraints were also at play.

2.5.2 Ethics of consent

Ethical dilemmas are familiar ground for anthropologists who are being increasingly called to accountability for how they represent others in their writing, and the potential effects of their writing. While many research subjects are now able to exercise a degree of control over their story and its representation, others cannot exert that control, because of intervening factors like distance, resources, language, and intellectual impairments. All plans for research with humans must be approved by governing bodies like university ethics boards, and, especially in health research, a similar body at the research site. The boards are guided by professional codes such as the Anthropology Guidelines, and can require changes to the research as necessary (AAA 1999). These reviews are especially important in the case of research with people whose ability to exercise control is limited, such as with people with intellectual disabilities. In this section, I review the ethical rationale and written agreement, which ultimately guided how I would represent people with intellectual disabilities in this thesis, and the process of consultations with L'Arche and the literature through which I came to this position. I discuss it here in detail in order to be clear with the reader about the particular resolution that was jointly developed for this project. However, I would argue that these issues are far from resolved generally, and require more urgent attention from researchers and agencies.

Anthropological researchers must expect to encounter ethical dilemmas at every stage of their work, and must make good-faith efforts to identify potential ethical claims and conflicts in advance when preparing proposals and as projects proceed. A section raising and responding to potential ethical issues should be part of every research proposal. (AAA 1999:Sec. B.1)

The preamble to the American Anthropological Association’s (AAA) ethical guidelines notes that dilemmas often arise between the competing ethical claims on research from the scholarly community, the people in the study, and the funding bodies (AAA 1999). The AAA rightfully prioritizes the safety and protection of the subjects of the research first, and “informed consent” is the principal tool for ensuring the safety for human subjects. The main ethical concerns in fieldwork should be “acquiring the consent of the people to be studied, protecting them from risk, and respecting their privacy and dignity” (Spradley 1980:20-5; Nanda 1994:41) Matysiak and others note that “The ability to give informed consent is always a concern, but especially with people with intellectual disabilities” (Stalker 1998; Swain, Heyman et al. 1998). (Matysiak 2001:194). AAA insists that its ethics guidelines must also be reconciled with “the ethics of the country or community in which the research is pursued” (1999), in this case L'Arche in Canada. Still, even after working with a team at L'Arche to combine the AAA and L'Arche guidelines with other professional recommendations on obtaining informed consent from people with intellectual disabilities I was left with some procedural and ethical uncertainty, as the discussion below reveals.

My original proposal to the university ethics review board at McMaster University did not include a discussion of the ethical issues surrounding research with people with intellectual disabilities because my original intention was to restrict the focus of the study to the caregivers. Although my committee, the review board and my liaisons and housemates at L’Arche all raised the question with me of protecting the people with intellectual disabilities’ right to privacy, I did not yet understand how the assistants’ growth and development were catalyzed primarily in relationships and experiences with specific core members (and specific assistants), rather than by the experience as a whole. Lacking experience in the field of disability, I also did not foresee the wide diversity of impairments and etiologies subsumed within the umbrella of “intellectual disability,” nor did I grasp how idiosyncratic personalities are often essential elements to the power and meaning of assistants’ stories. Lacking this awareness, I proposed to L'Arche and the review board that any information about core members would be conveyed through composites, or their identities would be made unrecognizable. My field notes include information about core members since they are the focus of life there, but I intended to obfuscate the identifiable details at the writing stage. At the writing stage, however, when I began to seriously think about what to include in the ethnography, I began to realize the importance of the particulars just noted, as well as other representational concerns. Before discussing the ensuing process of negotiation with L'Arche, I will provide background on the more general issues.

Background

There are myriad scenarios in which the question of whether to obtain, and how to ask for, “informed consent” directly from people with intellectual disabilities is raised and worked out, including for research, medical procedures and financial or legal decisions. Family or institutional legal guardians have most commonly been asked to give (or withhold) this consent, but there have been increasing efforts to put the decision-making power back in the person’s own hands whenever possible. First, I discuss the various degrees of disability and why this creates confusion or lack of standardization around procedures for consent.

The medical category of “intellectual disability or impairment” varies widely in degree and form. I discuss the medical history and cultural construction of the label in detail in Chapter 3, but I want to give a sense of its vast range. A person can have more than one intellectual impairment as well as one or more physical impairments. In addition, people with intellectual disabilities also have high rates of mental illness—often the iatrogenic consequences of poor conditions and treatment in institutions, and the stigma they face in society today. (Langness and Levine 1986; Edgerton 1993 (1967); Lunsky 2002). Old categorizations such as mild, moderate, profound or severe degrees of retardation are no longer in fashion, particularly in rights and self-advocacy discourses, but an awareness of the grades or degree of impairment, and how that affects what kind of life, activities, independence, consent and health are possible is still useful and in use (Langness and Levine 1986; Ferguson 1994; Kittay 1999). The question of informed consent then, involves different issues depending on the nature or degree of impairment of the individual being asked. In an attempt to formalize the “recognition that impairments in one area of a person’s functioning do not by definition mean that all areas of functioning are affected,” British Columbia has developed new guardianship legislation through Representation Agreements (Matysiak 2002). Instead of the previous blanket agreements where a person was declared incompetent, “Representation Agreements allow people to identify specific areas in which they would like or need help to make decisions” (ibid).

This discussion is primarily concerned with consent for research, not medical or financial decisions. A general discussion of two core members whose stories are included in this research should help illuminate the range of situations at hand. Alfred has profound intellectual and physical impairments and does not use language to communicate (non-verbal). However, he has lived in the same home in L'Arche for many years and as such, several assistants in his community have known him a long time and a certain base of knowledge has been accumulated about his preferences. The four primary ways that the assistants use to determine how he feels about something include: the tension in his body, his grumbling/vocalizations, his level of excitement expressed in agitated head or body movement or yelling, and his eye movements, where looking up often, though not always, indicates agreement. Information from these sources is gathered, and passing or temporary theories about his preferences are developed, to be tested repeatedly in new situations.

For example, assistants noticed that when the singer Sarah Harmer[xvi] came on the radio, Alfred often became excited, and when one particular song of Sarah’s came on, he almost always got very agitated and excited. The assistants feel fairly certain after years of this kind of behaviour, that Alfred likes Sarah’s music, and he likes that song, but they do not know why, or what in particular appeals to him, and it is even possible that he detests the song, although this is considered unlikely since when he has been asked if he wants it played, he usually looks up, indicating yes. But at other times, he did not look up. This generates irresolvable uncertainty over whether he is not looking up because he does not want to hear it, or because some intellectual or physical process is preventing him from responding in that moment. Part of what I am exploring in this section is what kind of procedure for consent would be the most respectful and realistic with Alfred or others with similar degrees of impairment?[xvii]

There are other people with intellectual disabilities in L'Arche whose impairments are moderate. As with Alfred, though, while assistants are fairly sure about some of these people’s preferences, in other domains, the best they can do is develop a working theory about what the person wants and balance that with what support workers and family determine is in the person’s best interest and possible/affordable. Even this can be vague though—assistants and agencies differ in their personal and organizational biases, such as whether they should turn to pharmaceutical or therapeutic approaches to solving core members’ concerns. Other people with intellectual disabilities have only mild cognitive and physical impairments and can have discussions and regularly make choices about what they do and do not want to do, as will be illustrated throughout this thesis. Henry, for example, is talkative and understands what books are, and he knows that he has been included in other writing, as well as in helping to present his life story at retreats for assistants. He likes attention and is happy to be talked about, and to have other people learn from and empathize with what he has lived through. He is very kind and sociable and has given me permission to talk about him and use his picture in my work. But in this thesis, along with saying nice things about him, I include a story about how hard he can be on the assistants who care for him. I am not sure that he would like that, and I wonder about my ethical responsibility to go back and explain to him exactly what the story implies. However, I would not do the same for an assistant since it is standard practice in social science research for the researcher to be willing to make change related to accuracy, but not to interpretations simply because the participant does not like it. Should the protocol be different for people with intellectual disabilities? What kind of ethnography would result then if people were able to remove all trace of their less likable sides[xviii]?

Another factor in this issue is the relationship between the researcher, or a social worker or caregiver who is facilitating the process of requesting consent, and the person with intellectual disability. What is important is not so much the actual pressure on the person with intellectual disability to say yes, as the possibility or likelihood that they perceive pressure or obligation to be wrapped up in the process. Some researchers can ask a person directly for consent, but most research is undertaken in organizational settings and so this process is normally facilitated by a caregiver, social worker, parent, guardian, or friend who knows them better to heighten comprehension of their response, and to help protect them (Stalker 1998). Both of these procedures (direct and assisted requests of the person themselves) have the advantage of including the person in the decision, which can be empowering and respectful. L’Arche assistants are trained in ways to involve core members in decisions that affect them, but how this is accomplished in practice is complex, highly iterative, and often not definitive. Still, it is considered a valuable reminder that people with intellectual disabilities are fully human beings who have rights and preferences and deserve inclusion, even where their ability to understand or respond is ambiguous. Although this procedure can be effective, it is also possible that in some situations the person’s response is more an indication of their relationship with the person making the request than their feelings about the research. Vanier has written extensively about how lonely and loving many people with intellectual disabilities often are, and how this habitually leads them to want to help or please people in order to establish a connection (Vanier 1979; Vanier 1998). Many are also very trusting, although, as with any group, there is a range of personalities. With some of the people who gave me consent, I could not say for sure whether they said yes to be pleasing, or because we were friends or acquaintances, or because they approved of the research. They may also assume that as a “friend” (or at least someone their caretakers apparently trust), the researcher would only write good things about them.

Other researchers have addressed directly how these relational concerns, as well as the inherent power asymmetries, leave them uncertain about how valid the consent can be considered. Matysiak for example, expressed her concern over “the issue of trained compliance or acquiescence which is a feature that may be present among some people with intellectual disabilities, especially with regard to requests made by non-disabled authority figures (Sigelman, Budd et al. 1981; Biklen and Moseley 1988; Sobsey 1994).” (Matysiak 2001:194). She admits that although all of her participants were legally able to give consent, and seemed to understand the nature of the research, she wonders whether, or how much, they were influenced to participate by the fact that she was an able-bodied staff member working in that agency (Matysiak 2001:196). In his research about sterilization of people with intellectual disabilities in Canada today, Desjardins argues that power and relational factors, such as wanting their parents’ approval, and their perception of medical authority, amount to such pressure on the people with intellectual disabilities to agree that it hardly constitutes voluntary consent (Desjardins 2000).

Key issues

At this juncture, I want to separate out several strands of the question of informed consent generally, and for my research in particular. In order to sort out what concrete procedures are appropriate, the intangible, ethical questions at hand need to be teased out. There are four key elements to the ethical dimension of this dilemma: conflicting notions of what is ethical, the right to privacy, potential for harm and appropriateness of representation.

a) Conflicting notions of what is ethical

The moral position one employs to decide what is ethical, and the historical period in which the case transpires, can greatly influence what is considered ethical. Deontologists establish principles to be universally applied, whereas a teleological position such as utilitarianism dictates that consequences be taken into account and that therefore, ethical means the greatest good for the greatest number. Furthermore, in the field of intellectual disability, the parents’, caretakers’ and governmental notions of what constitutes ethical practice and care have varied radically over time, as I discuss in detail in Chapter 3. Notions that many today (although not all) would consider quite unethical, such as involuntary sterilization, were at one time considered ethical from the utilitarian perspective of government-sponsored social and moral hygiene programs that claimed to be preparing disabled adults for parole, and protecting society from further unfit births (Tylor and Bell 1984; Ferguson 1994; Trent Jr. 1994; Smith 1997). Charitable campaigns run in the recent past by well-intentioned supporters, have now been criticized for promoting stigma by reproducing stereotyped images of people with intellectual disabilities as helpless and pitiable, in spite of the funds raised. It is likely that well-intentioned research today will be the target of similar revised understanding ten years from now.

b) Right to privacy

The second key issue is how to define the parameters and pragmatics of a person with intellectual disability’s right to privacy in such a situation. Basic research ethics guidelines say that it is the researcher’s responsibility to protect the privacy of those about whom they write. What is not always specified is private from whom, and for what reasons. In research about people who are using and sometimes cheating on welfare, it is clear that the person would want privacy from the state social workers, but not clear that the individuals need to be unrecognizable to their friends, with whom they often talk about claims and loop-holes (Kingfisher 1996). In this research, most of the stories that I use are in circulation in the communities and therefore already not “private” or secret, and if I use pseudonyms so that they are unidentifiable to people outside their community, (as I did for assistants), is this sufficient privacy?

“Anthropological researchers have primary ethical obligations to the people, species, and materials they study and to the people with whom they work ... To avoid harm or wrong … To respect the well-being of humans … To consult actively with the affected individuals or group(s)” and to “do everything in their power to ensure that their research does not harm the safety, dignity, or privacy of the people with whom they conduct research” (paraphrased) (AAA 1999)

c) Potential risk of harm

The third key issue is the potential risk of harm to the participant from being identifiable by strangers or by people who already know them. Possible sources of harm to people with intellectual disabilities in the process of being interviewed have been identified, (Swain, Heyman et al. 1998; Matysiak 2001) but my research with them was only indirect, that is, through observation and others’ stories. In discussions with L'Arche, we could not determine any risk of harm to the core members from writing stories about their relations and behaviours in the community, excluding their medical and family histories. Although writing something that exposes a weakness or fault arguably taints someone’s image, again these stories are generally known inside their communities. In any case, I did not afford the privilege of flawless representations to the assistants either. Duneier insists that accurate portrayals of people and events, even when unattractive, are essential to drawing connections between particular histories and unjust socio-political forces that act on them (1999).[xix]

d) Appropriateness of representation

The fourth issue is about representation and questions of voice. As discussed in section 2.3.2, anthropologists are working to develop better ways to include the voice of others in their research, as a way to open up authorial control. In this fieldwork, however, I did not interview people with intellectual disabilities directly because this was not my project. My project was to give voice to the experiences of assistants, and in the course of those interviews and daily conversations, the assistants told me many stories about the people with intellectual disabilities with whom they lived and worked, and how that person had affected them. So whose story is it then? If Zoe tells me a story about how powerful it was to work through a difficult relationship with Joe, a raucous core member, is Zoe’s consent sufficient for me to proceed? Certainly this is sufficient in most ethnographies of people without intellectual impairments.

Procedurally, there are two central issues: the quality of understanding resulting from being informed about the research, and the quality or meaning of the consent. In other words, to what degree does someone understand the risks and benefits of what they are agreeing to? Second, who decides what constitutes a valid yes (whether in gestures or verbally), and whether that yes means he likes the research, or that he likes the researcher or assisting caregiver, and is trying to be nice to them? As discussed, in each case there are degrees of quality of understanding and consent. In the case of research like mine that includes people of a wide range of abilities, should a researcher therefore develop a different process and tool for each person?

In the ethnography, there are two further issues: degree of consent and responsibility to revisit consent. If a person with intellectual disability gives consent in the form of a non-verbal expression of yes, does that mean I can write anything about her, including medical or abuse histories, or an interpretation that may not be flattering? Alternatively, should a gesture or verbal no mean never mentioning her, even if it is flattering or part of someone else’s story? Establishing a nuanced or limited consent would be very difficult in most cases, which leaves the decision largely up to the researcher or guardian. Finally, once the work is written, what responsibility does a researcher have to review it with a person with intellectual disability? Although I do not meet individually with the assistants to revisit their consent, they are ostensibly able to read the draft copies I provided for the communities, which core members could not do.

Potential solutions and their issues

A few solutions have been developed in the field but each of them has been critiqued from some perspective, or they are not suitable for this research project. It was difficult to determine what the most common approach in the field is because many articles and reports do not specify what method or ethical principles are followed. Since classifications and labelling are currently considered distasteful, it can also be difficult to assess the degree of intellectual impairment of people in some studies. My main concern is that it is often not clear to what extent a person with intellectual impairments is able to give informed consent even when they are willing to consent. The ambiguity of the term “informed” does not make it easier to clarify. How much does the research participant have to be informed of? Does consent to use someone’s story cover its eventual use to illustrate an argument that was entirely unimagined and unanticipated by the participant, and possibly quite undesirable to them? My impression is that this risk is rarely made clear to participants by any researchers at the time of the request for consent.

I outline the range of solutions that have been developed in the field, as background to my negotiations with L'Arche. In trying to develop an appropriate solution for this project at the writing stage, I consulted a range of sources including the AAA’s and the American Association for Mental Retardation’s (AAMR) ethics guidelines, the disability literature for other discussions of consent, conversations with researchers in this field about their approach (where it was not specified in their published work), L'Arche, and people from other agencies. The AAMR’s “Guidelines to Professional Conduct” do not provide any clear procedure for how to handle this issue, although it lays out some helpful principles. It urges practitioners and researchers to honour the needs and choices of the person with intellectual disability(s), to respect their “dignity, privacy and confidentiality” and to practice full disclosure so people can “make their own informed decisions to the best of their ability” (AAMR 2001). The AAMR cannot provide specific procedures for ascertaining choice or consent in every case due to the diverse possibilities. Principles like this are good for at least establishing a sensibility around the issue. For example, this principle makes it clear that if a person is judged capable to understand this concept and give consent, then the researcher should ask them directly. The ambiguity lies in who makes that judgement about capability; the person themselves, their legal guardian, their agency, or the researcher? The appropriate procedure for establishing consent then, depends on the degree of someone’s disability but also on the researcher and agency’s politics.

Several researchers in and outside of L'Arche feel that the most respectful approach is to discuss and obtain consent directly from the person with intellectual disability, but they were also all required to have consent from the sponsoring agency or group through which they had access to meet these people (Mosteller 1996; Porter 1998; Stalker 1998; Kittay 1999; Desjardins 2000; Epp 2000; Matysiak 2001; Pottie 2001). Matysiak, for example, wanted to do a focus group with people in the agency where she worked, all of whom, she helpfully specifies, “were legally able to give consent (i.e.) had not been declared incompetent. All of the people in the study were able to clearly indicate their choice as to whether or not they wished to participate” (2001:194). Still, she also sought approval from the agency sponsoring that self-advocacy group, and she worked in that agency herself. Her consent letter was written and read in “plain language,”[xx] but she reports that even this seemed “inadequate” for certain participants (ibid:195).

The most common legal solution for medical procedures or financial questions, is to get the consent of a person’s legal guardian. In research however, this would mean that a guardian (who may or may not be versed in different and new ways of thinking about intellectual disability and how to represent it), would have the power to restrict a researcher from writing anything that the guardian considered inappropriate. For example, something that revealed a side of their charge that they did not like, or an embarrassing part of how the family treated the person with intellectual disability, could be disallowed. Furthermore, a guardian’s decision can be biased towards self-interest, or protection of family history, rather than what might be in their charge’s best interest. This kind of veto could block a writer from presenting individuals as whole actors, with strengths and challenges, which is as important for people with intellectual disabilities as it is for others. It is likely even more important given a common tendency for them to be presented as a homogenous group based on medical diagnosis alone, and labelled with one-dimensional, polarized stereotypes (Trent Jr. 1994).

Composite identities and pseudonyms are another way to protect people’s privacy. In discussions with the group of assistants at L'Arche, we considered both of these options. Composites facilitate a great degree of privacy, however they raise other issues. Composites can be objectifying, in that they can imply that anyone with a certain trait, (e.g., native, wealthy, disabled) is the same: generic, interchangeable, and having no relevant individuality. In an article that I co-wrote about relationships between assistants and core members, the Daybreak assistants requested that we limit the particulars provided about the individual core members in it for their privacy. Instead, we discussed general patterns of abuse and hardship that people with disabilities suffer to evoke a sense of what many of them had been through, without revealing their identities. Ironically, one of the three peer reviewers at the major journal it was eventually published in required that this composite approach be changed, or at least more clearly justified, in order to avoid the pitfalls just described (Cushing and Lewis 2002). Obviously the two ethical goals of protecting and humanizing people with disabilities were in conflict here.

The most compelling strike against composites in my mind however, and particularly for research with L'Arche, which promotes the value of individual diversity, is that composite figures can compromise integrity of identity. I need to share at least something of the character and complexity of the people with intellectual disability in this research because it is precisely their particularities that can transform them from stereotyped caricatures into fully human subjects for the unfamiliar reader. It also evokes how assistants experience them: not as a group, but as individuals. Their unique character or personality is often why they have such a strong influence in the lives of the assistants who live with them. It is also sometimes the frightening details of their history of abuse or neglect that are moving for assistants, (see for example Mosteller 1996; Vanier 1996; Vanier 1998). In my project however, I chose not to include stories that required personal medical data to be relevant, since it was not essential to make the same points.

L'Arche negotiation and agreement

In this section, I outline the procedure that L'Arche and I followed in developing a solution for this thesis, including additional factors specific to this community. As noted earlier, in my initial proposal and agreement with the community, I had their consent to observe and write about the lives of assistants in L'Arche, which would include general information about core members, but not specifics. Although I did presentations for everyone in each community, I only sought written consent forms from people whom I interviewed formally, and I did not interview any people with intellectual disabilities. Eventually I decided that it would be important, and in my judgement, ethical, for the ethnographic representation of core members to include salient particulars about their personalities and lives, as discussed above. At this point, I discussed the issue with my liaison, who felt the issue needed to be considered from different perspectives. He organized an ad hoc committee of long-term assistants with diverse experience and positions on such matters, and they asked me to write up a discussion of what I thought the key issues were, what I wanted their advice on and permission for, and a written sample. I did not anticipate any concerns given that other people had written about L'Arche core members in more detail than I intended to in books, article and theses, with and, more often without, pseudonyms. However, in raising the issue, I generated a forum for discussing concerns that had been on their minds.

L'Arche communities have a blanket policy that most core members’ legal guardians agree to in advance that authorizes L'Arche assistants or approved writers to write and talk about core members for internal and external audiences in line with their mission so long as it is respectful. This is common practice in other agencies as well. Most writers, primarily assistants and journalists, have community permission. They also usually ask the core member for consent directly or with an assistant as intermediary, but do not typically go to their legal guardians, or use pseudonyms. Many writers feel that using the person’s real name is a form of respect. Since most writing is done by L'Arche assistants with long tenures, good relationships with core members, and a commitment to serving them, there is a certain freedom around what they write, and indeed, most core members say they are proud and happy to be named. The writing focuses on the positive message L'Arche has about the value of people with intellectual disabilities, and on a pragmatic level, these spiritual writings are a significant means of attracting assistants and donations[xxi]. The writing tends to highlight the best sides of the core members, but sometimes what L'Arche, or these writers consider best, does not agree with what guardians consider best. In recent years, L’Arche has had a few cases of guardians being opposed to, and insisting on the removal of, information about their charge from articles and books. As a result of these changes, and the fact that my work is a scholarly work, apt to contain a more balanced, and thus in some cases, critical perspective on life in L'Arche, the ad hoc ethics committee determined to establish more specific guidelines.

After several iterations to my original writing sample and draft statement of terms and conditions, the committee and I agreed on a course of action that we considered was ethically appropriate, and could not lead to harm for the core members. I agreed to use pseudonyms for all core members, as was my approach with assistants. We distinguished between when the recognizable details were about their personality, or their medical and personal histories. I agreed that for most stories, I could include salient details of the core member’s idiosyncratic personality, but not details about their medical conditions or family and institutional history. For those stories where some detail about the core member’s medical history is necessary, or where a person’s attitude or behaviour is not flattering, I would change other details about them so that they would not be recognizable to other assistants who likely did not already know about that condition or behaviour. The exception is with stories that are already written about, or very well-known in L'Arche. We developed a revised general consent form outlining the terms and conditions that I agreed to abide by as listed here (see Exhibit 2.6 Terms). Although this agreement would not satisfy every possible criticism, it does better address the specifics of my approach, provides clear protection of privacy and makes the process transparent to the reader. I also committed to providing each community I visited a copy of the thesis to review, and give feedback on. In practice, I have shared several sections with different assistants throughout the writing process to ensure that the work abided by the agreement. My thesis committee at McMaster University also approved this form, agreeing that it dealt appropriately with the various ethical guidelines involved.

2.6 Conclusion

In this chapter, I presented a comprehensive outline of my theoretical orientation to ethnographic field work, my methodological approach and my research design. My aim in being transparent about how my information was obtained is to provide the reader with a firm basis from which to evaluate the quality of the ethnographic data. I also disclosed my reflections on weaknesses in my methodology, errors that I made, and dilemmas that I faced in the field, and how the issue and my approach compare with the experiences of more experienced anthropologists. In each case, my hope is to show how these minor and major problems influenced the quality of data that I gathered, but also to show what degree of self-awareness I had in the field and afterwards regarding the limits of my work. I learned a great deal about ethnography and participant observation by facing such concerns, making mistakes, hearing feedback from my participants and my committee, and in reflecting on the outcomes. My original research questions now seem impossibly broad and vague, and I see how this played out in the field where I cast a wide net, but did not have a clear map to help me narrow down what kind of information I sought. Fortunately, these issues have not been ruinous, as I was eventually able to discern a narrower writing focus.

What follows in Chapter 3 is the fascinating history of the medical changes, and cultural construction of the category of intellectual disability, and the different solutions to this social question that have emerged over time. Understanding this history provides the necessary grounding for the discussion in Chapter 4 about where L'Arche fits into the overall picture of the field. The basic history is also a necessary background for understanding what draws people to be assistants in L'Arche, which is the central concern of Chapter 5. People who come to L'Arche start off with a perception of people with intellectual disabilities that is at least partially based on common cultural representations of them. Therefore, in a less direct way, the basic history also informs my analysis of how assistants’ experience of L'Arche and people with intellectual disabilities is constructed, as I discuss in chapters 6 and 7.

2.7 Endnotes

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[i] Later in this thesis I discuss how other writers have problematized the notion of experience (Scott 1992b; Mohanty 1989).

[ii] It was not until the end of the project that I began to problematize the cultural assumptions and norms that make personal change desirable.

[iii] The other four issues that I identified were: 1) the experience was too short for them to experiment with, and fully integrate the changes into their self-concept; 2) many of the supportive cultural and relational factors on course did not exist in their busy regular lives; 3) the people they went home to, did not have a shared understanding of what the student had been through and were thus ill-prepared to support them in their change; and finally, 4) that Outward Bound’s course design failed to enact the necessary elements of a proper ‘exit’ phase according to the rites of passage model, leaving students unsure of how to reintegrate as their (partially) “changed self” (Cushing 1998; Cushing 1999).

[iv] Not the real name of the house.

[v] As the oldest and largest Canadian community, Daybreak was not necessarily representative.

[vi] Where ethos is the social group’s moral and aesthetic tone, and worldview is their perception of “actual reality” (Geertz 1973c:89).

[vii] Results will be made available later.

[viii] Narayan (1993:676) discusses the importance of acknowledging ways in which the research is connected with and implicated in the worlds of those they study.

[ix] See Ortner (1995) for a compelling discussion of other dangers of omitting internal diversity.

[x] Although L’Arche might be aided by my research, I think the chief reason that I was allowed to be there was their desire to help a student.

[xi] Intentional community means much of your life is public knowledge, so many assistants seemed protective (reasonably, I think) of their few hours of private time. Before I understood this, I would often ask assistants what they were doing/did in trying to gather information. Their responses ranged from candid to vague, which subtly indicated my overstep, and one friendly housemate was explicit about her discomfort with my questions about her time off.

[xii] I now see that other creative solutions to this dilemma are possible; at the time however, I did not think that the issue was worth pushing.

[xiii] Each assistant was to be paired with the female core member whom they felt closest to, and each pair was to work together to construct their joint story. Four of the five core members involved were not able to write or tell an unassisted story. T. Lewis co-wrote this article with me.

[xiv] Foucault explained that the French distinguish linguistically between the knowledge achieved or embodied in intense, initiatory moments, l’épreuve, and knowledge achieved via safe, rational inquiry, l’enquête (Miller 1993:269-73).

[xv] The ethics guidelines that I consulted were: Social Science and Humanities Research Council (SSHRC), American Anthropological Association (AAA), American Association for Mental Retardation (AAMR), and McMaster University guidelines.

[xvi] This is not the actual singer that Alfred likes, just a substitute for discussion purposes.

[xvii] Matysiak notes that traditional medical and rehabilitative researchers usually get consent from sources like the institution or a public trustee. This is thus mainly an issue for critical researchers who have tended to simply avoid the issue by not involving people with profound disabilities (Matysiak 2002).

[xviii] For examples which do not remove the negatives sides, see Kingfisher (1996), Duneier (1999)

[xix] Similarly, Ortner maintains that to cover up the unflattering aspects of our subjects’ lives is a disservice to them, and seriously impairs the quality of the analysis and representation (1995).

[xx] Plain language is an approach developed to help make requests for consent more accessible to people with intellectual disabilities. It means “a type of writing that is straightforward and jargon free, but is not condescending or simplistic” (CACL 1997). For example, consent is replaced by the simpler, permission.

[xxi] Stories in books by Mosteller, Vanier, and Nouwen are profound statements about the gift that the core members have been in many people’s lives (Mosteller 1996; Nouwen 1997; Vanier 1995; Vanier 1998).