Interpersonal connections, friendships, and belonging play important roles in a person's emotional and physical well-being. However, recent studies reveal that persons with developmental disabilities often live with few connections and friendships within unwelcoming communities. Through this qualitative study, we enter this relatively unexplored area of friendships between persons with and without developmental disabilities by interviewing four existing friendship dyads in the intentional community of L'Arche. In this research these friendships are described, factors that foster or inhibit their development are identified, and communal influences on the relationships are discussed.
In this study we investigated friendship relationships between persons with and without a developmental disability. We consider reciprocity and the ability and desire to recognize the gifts of the other essential aspects of friendship. To further ground the nebulous notion of friendship, we chose an Aristotelian conceptualization that depicts friendship as a choice to engage with the other, goodwill (positive action, friendly disposition, affection, trust) towards another, goodwill reciprocated, and a shared recognition of the reciprocated goodwill by both persons (Aristotle, 1963).
Our purpose in this explorative study is to describe friendship relationships between persons with and without a developmental disability and identify factors that foster or inhibit these friendships. In the course of examining these friendship narratives, we also illustrate and attempt to interpret the role of the milieu (L'Arche community) in these relationships.
Enormous change has taken place in attitudes toward and care of persons with developmental disabilities (Amado, 1993b). These changes are seen in the implementation of person-centred planning (Browder, Bambara, & Belfiore, 1997; Hagner, Helm, & Butterworth, 1996), the building of social networks (Amado,1993a), and the inclusion of a person with a developmental disability in his or her community (Snow, 1994; Turnbull & Turnbull, 1996). To raise these approaches beyond the policy page, each requires committed personal relationships. The problem is that many persons with a developmental disability have impoverished social networks (Brown, Raphael, & Renwick, 1997; Lord & Pedlar, 1991) and few relationships outside their family and/or formal caregivers (O'Brien & O'Brien, 1993).
Although research suggests that persons with developmental disabilities have limited social connections and few friends, many do have an assortment of relationships with formal caregivers. In her three accounts of friendships between caregivers and persons with developmental disabilities, Lutfiyya (1993) identified two interpersonal events as critical in the friendship-forming process: relocation of the caregiver and transcending the caregiver/friend role conflict. What remains unexplained is why and how caregiving relationships change into these uncommon alliances (Bogdan & Taylor, 2001; Lord & Pedlar, 1991; Lutfiyya, 1993).
The caregiving relationship is potentially and ideally personal (Sumarah, 1989), and the social service system shapes how a caregiver disposes himself or herself to a relationship (Amado, 1993a; Lord & Pedlar, 1991). Lutfiyya (1991) suggested that the largest barrier to the development of reciprocal relationships is the practices of the human service system, which she found curtailed opportunities for the development and maintenance of these relationships. Apparently, these relationships are facilitated or and inhibited by the cultural attitudes of a particular agency, community, or family (Carruth, Tate, Moffett, & Hill, 1997; O'Brien et al., 1993).
Relational satisfaction in caregiving is identified as an important aspect in reducing the burden of giving care (Heller, Miller, & Factor, 1997). A key contributing factor appears to be recognizing reciprocity in the relationship (Carruth et al., 1997; Horwitz, Reinhard, & Howell-White, 1996). Studying the relationships between caregivers and persons with severe mental illness, Horwitz et al. (1996) found that higher levels of reciprocity within the relationship reduced stress and increased satisfaction within the relationship. Carruth (1997) highlighted the importance of contextual factors in her research on a caregiver's perception of the carereceiver's action (e.g., expression of gratitude, affection, requests of assistance, reaching out for relationships), and how these perceptions are influenced by interpretations (judgments) made by other family members.
Our Aristotelian definition of friendships cannot be understood independent of the relationship between justice, giving care, and the community context (Badhwar, 1998). Contextual proximity (community) increases the demands of justice as lived out in caring reciprocal relationships; the act of cultivating these relationships fosters community for all members (Dokecki, 1992; Newbrough, 1995; Vanier, 1989). Bogdan and Taylor (2001) argued that for persons with developmental disabilities to become full community members, caring relationships have to become the keystone of our communities. Because of the importance of these contextual factors, we have situated this study in the caregiving community of L'Arche.
Founded in 1964 by Jean Vanier, L'Arche today is an international federation of 117 nondenominational communities, in which persons with and without (staff members) developmental disabilities strive to create inclusive community by living, working, and sharing their lives together (Vanier, 1982, 1989, 1998). A common Charter and an international constitution that specifies the structure, vision, support, and authority for membered communities unite these diverse communities. An excerpt from the Charter of the Communities of L'Arche (General Assembly, 1993) exemplifies their vision:
Whatever their gifts or their limitations, people are all bound together in a common humanity. Everyone is of unique and sacred value, and everyone has the same dignity and the same rights.… Since the deepest need of a human being is to love and to be loved, each person has a right to friendship, to communion and to a spiritual life. If human beings are to develop their abilities and talents to the full, realising all their potential as individuals, they need an environment that fosters personal growth. They need to form relationships with others within families and communities. They need to live in an atmosphere of trust, security, and mutual affection. They need to be valued, accepted, and supported in real and warm relationships.
L'Arche communities work to create a different lens through which to view persons with developmental disabilities by purposefully speaking of their gifts, telling their stories, and valuing their friendship (Coppersmith, 1984; Mosteller, 1996). We believe that studying friendship dyads within this context will inform us about the formation of these relationships and suggest ways to encourage these relationships within society and other caregiving contexts.
A qualitative field research methodology was chosen to encapsulate and analyze the friendship stories. Our goal was to describe how these friends attribute meaning to their experiences, situate themselves in their cultural (community) life, and symbolically communicate this in their shared stories.
We chose to interview friends as a unit rather than individually, as has been done previously (Hutchison, 1990; Kronick, 1996). We anticipated that the dyadic interviews along with the researchers' familiarity with the culture of L'Arche would facilitate participation, especially from the person with a developmental disability, and overcome a noted weakness in Lutfiyya's (1991) study of a similar design. Given the constraints of this project, we took the method used by Crabtree and Miller (1999) and used a criterion approach to create a more homogeneous sample that controls for context and diversity; offering the opportunity to explore and understand a select group of individuals. The criteria used to select our four friendship dyads were: same-gendered dyads in which each member considered the other as a friend (Lutfiyya, 1993); the dyads had known each other for at least 1 year; both friends were recognized members of a L'Arche community. To represent the ranges of abilities and disabilities, one of the 8 friends had a severe developmental disability.
The narratives were collected through observation, in-depth semi-structured interviews with the dyads, and a key informant interview. The observational data on each dyad was collected during a commonplace event (a shared meal) and during the in-depth interview. We chose a meal time as a significant event to observe due to the importance attributed to these times in L'Arche (Sumarah, 1983).
The collection of observational data was guided by an adapted version of Knapp's (1980) Global Analysis of Human Communication. During the initial phase we attended to details in the environment and to characteristics of the participants. In the interaction phase we observed touching behavior, facial expressions, eye behavior, posture/position, vocal behavior, physical movement, and verbal behavior.
Semi-structured in-depth interviews were used to generate descriptive narratives that focused on what facilitated or inhibited these friendships and the place of the community in these friends' story. The interviews followed an interview guide comprised of explorative questions loosely based on the literature review of reciprocity and friendship, the Psychological Sense of Community Index (Chavis, Hogge, & McMillan, 1986; McMillan, 1996), and our personal experience of the culture of L'Arche communities.
A particular challenge was the inclusion of a person with very limited verbal and expressive communication skills in the narrative phase of this study. To facilitate our understanding of the person's nonverbal communication, we conducted a separate semi-structured key informant interview. Based on the method of Gilchrist and Williams (1999), we selected a key informant who was fully enculturated and active in the community, able to be reflective and articulate about the person's style of communication, and approved by the friendship dyad. We relied on both the friend and the key informant to incorporate the nonverbal friend's behavior, expressions, and experiences into the narrative.
In analyzing the narratives, we focused on identifying themes and categories to provide a rich description of the friendships, identify the friends' perception of the community's role in their friendship, and identify factors that have facilitated or inhibited these relationships. According to Crabtree and Miller (1999), making sense of the data during the analysis is an interpretive dance that occurs in five interwoven stages: describing, organizing, connecting, and corroborating/legitimating. In the analysis process we used, we were also influenced by Bogdan and Biklen's (1998) detailed discussions on coding data.
Selecting the best way to represent the findings was the final stage in this process. In both the data analysis and in the description of each theme and subtheme, we have tried to attend carefully to the “voice” of both the person with a developmental disability and the person without. It was here that the value of interviewing the friends together became apparent; in each other's presence, elements in each friendship were revealed that we may not have perceived had we interviewed the friends separately.
Participants and the L'Arche Context
All the participants were associated with a large, established L'Arche community located in urban Canada. Approximately 200 people are involved in this community in a variety of residential, employment, and/or volunteer capacities. The community has 12 homes, two day programs, a sheltered workshop, supported work, and a community gathering/spirituality center. The homes, where 6 to 12 persons with and without disabilities live, are situated in residential neighborhoods. The provincial Department of Developmental Services provides primary funding for the community's residential and work options. Characteristics of each participant are shown in Table 1. Names of the participants are pseudonyms.
The research findings clustered into three categories: contours of friendship, facilitating friendship, and L'Arche: a community context.
Contours of Friendship
This category identifies themes that sketch an outline of these friendships as we came to know them through the stories themselves and through the process of their telling.
A certain amount of security: Trust, tension and growth
This theme refers to the friends' experiences of safety and the tentative growth of trust within the relationship and in the community. In all four of the friendships, there appeared the sentiment, either spoken or communicated nonverbally, that the friends trusted each other enough to feel safe and secure in the other's presence and in the relationship generally.
Danielle: I think with some people in the community I am still working at friendships, [but] when we're together I feel that there is something there, I don't have to be nice. Well I still have to be respectful, but I don't have to entertain you. I don't have to—we just can be, and the conversation can be that way. We might talk about what we had for lunch or breakfast or whatever, but there is a feeling of feeling rooted and connected that makes me feel peaceful. I think that is there between us.
Another aspect of feeling safe in a relationship was the ability to struggle through moments of tension that arose when one friend disagreed and challenged the other. Moments of tension and challenge were scattered throughout all four of the friendship stories.
Tomas: Sometimes other people have difficulty dealing with conflicts they have with Harvey. Harvey, sometimes you can be pig-headed…
Tomas: Sometimes other people have difficulty knowing how to deal with your pig-headedness.… Do you think that's true, or you don't think you are pig-headed?
Harvey: Ah, well I am not saying I am, and I not saying I'm the easiest person.
During the interview, there were also occasional moments of disagreement or tension as one friend asserted him or herself over the other. We experienced these friends' ability to speak freely with each other about these struggles as an expression of the security each felt with the other.
In three of the four friendship stories, one or both of the friends mentioned moments of personal growth and/or a movement towards a new acceptance of who he or she was as a person. The trust the friend experienced in the friendship, and within the community, permitted him or her then to take the risk of growing into his or her voice.
Stan: We are all going to have something we are afraid of, and then we all have something that helps us regain our strength, and say, this is how it is. When we know that we have someone that trusts us, then it helps us say yes we can do it, and we… believe we can do it. I think César and Bill have that in me, they believe I can do it, so I took their trust… knowing that I could [do it], and that's what really helped me.… [Before] I guess I didn't really believe that I could do it, and I was still thinking about the past when I couldn't do anything for myself. So because of that I couldn't really, but now I think I can.… I never knew I had a voice of my own until I started speaking up for myself.
There was a need for a certain amount of security, the knowledge that there are flexible boundaries and walls that both protect and leave enough space to grow into. Speaking about Kate and how she has grown over the years, the key informant commented that Kate had been like “a fish growing to the size of her fish tank: the more room she has the more she has grown!”
Interactions: Learning to dance together
This theme conveys the interpersonal movement in these relationships. What emerged was respect, communication without words, invitation and participation, and the need for a structure.
In the storytelling, a pattern of verbally seeking permission emerged, most frequently enacted by the person without a developmental disability, that conveyed a sense of respect for his or her friend. We interpreted this as sensitivity to the power dimension of the relationship and an effort to include the other in the interaction. During the interviews, interactions such as these between Renée and Kate or César and Stan were common.
Renée: Is it OK if I go ahead and talk? Do you want to do a talk? I won't say anything that we didn't talk about last night, is that OK?
César: We don't have to go into the details of it…
Stan: No, I'd rather leave that out.
Emerging primarily from field notes was evidence of nonverbal exchanges that conveyed both affection and respect and demonstrated another approach to including the other person in the conversation. Although it was often the persons without a developmental disability who took the lead in interpreting their friend's behavior, they also acknowledged that most of what they know in the area of nonverbal communication was taught by their nonverbal friends. The following field note depicts this:
Kate frequently looked over and up at Renée. Renée frequently turned her head towards Kate, leaning towards her as she was talking, touching Kate's wheelchair and occasionally her arm, or moving her hair out of her eyes. Renée seemed to do this to include Kate, or as a way to allow her to participate (by touch or by association) in the conversation. Renée spoke to Kate with the assumption that Kate could understand what she was saying—this also conveying a sense of respect for Kate. The general pattern of the conversation was that Renée would speak for Kate. However, Renée would use her posture, touching, tone of voice, and rhetorical questions with the seeming intention, and having the effect, of including Kate in the response Renée was offering on Kate's behalf and in the conversation as a whole.
Although a reliance on nonverbal communication presented certain frustrations, the struggle to communicate with and for the friend who has developmental disabilities was paired with respect and an appreciation for the friend's ability in the arena of communication without words.
We noticed actions of stepping back, creating space for the other to move forward, that invited the friend to participate more fully. One friend might leave a moment of silence, or wait for a response, giving the other space to enter into the conversation. This was done by simple actions, such as paying attention to the seating arrangements during a mealtime, explaining to a visitor how the person says yes or no, or facilitating the conversation. These behaviors varied in degree and form across the four friendships and, at times, extended to the community, as the following dialogue illustrates:
Danielle: So being part of committees and groups and meetings just isn't your thing. So, but we found ways that worked because people who have lived with you know that you have really good ideas, so for example you were on [community advisory] Council for a while, right?
Danielle: You were kind of ad hoc, which means you never came to the Council meeting… people would go and talk to you and get your opinion on things, right?
Danielle: Or you have a quote in the brochure.… It was just people talking with you and that's how [the quote came about]… and you do art work?
Being in a close relationship with another person was often difficult for one or both of the friends. Respecting the importance of structure (e.g., Danielle respecting Loretta's need for routine or Tomas helping Harvey structure his thoughts) helped the friends negotiate some of their interpersonal challenges. Often, the friend without a developmental disability maintained this structure, giving rise to the question of how individual choices are respected and how the person with a developmental disability experiences the power imbalance in the relationship. The only discernable resolution was the friends' continuing choice to respectfully struggle together with this issue.
Danielle: Yeah, so we, I think we had to learn, there was a bit of a struggle about how to be friends in a way that we respected boundaries and we didn't get too focused on each other.
Loretta: Yep, no.
Danielle: That kind of stuff. Yeah, so we are not, you know how, like, some friends can be kind of, like, huggie and kind of warm and cozy and fuzzy, that kind of… and our friendship isn't like that, and it isn't safe for us to be like that.
Danielle: But, so the struggle was, how do you love someone and how do you be close to someone without that, I don't know, that warm fuzzy way of being. So we found ways though, right?
Danielle: So, ways that if it was kind of hard to get connected we might do something like really little [touching their pinkie fingers together], like that, yep, that reconnects us.
Faithfulness: Maintaining the bond of friendship
The theme faithfulness includes factors important to sustaining the bonds of friendship. These factors include frequency of contact, personal values, a personal quality of fidelity, and elements within the community. Frequency of contact and the opportunities to just “bump into each other” during the many community events were often mentioned as important factors in maintaining the relationship.
Stan: Um, just by, like I said earlier, um, it is when he comes to our place and visits or I come in here or we just sort of bump into each other and we don't expect it, it is like, wow! [laughter]
Tomas: I think the most important thing is coming together for meals at the house. We do go on holidays and weekends together, and participate in celebrations, but really what allows… us to know what is happening in each others lives and be able to talk about those events is meeting a couple times a week.… It is a chance to have an hour to hear each other's news and the news of the other people in the house—to maintain contact and share in common relationships really keeps our relationship alive.
For the friends without a developmental disability, personal values and a commitment to the community's vision were central in their faithfulness to the relationship. As Renée noted: “I realize how counter cultural L'Arche is at some level, and in some ways it motivates me to live well what I am living. I know that I am trying to witness to the value of each person.”
The persons with developmental disabilities often lived out their faithfulness to the relationship through particular behaviors that nurtured the friendship. These included such habits as phoning or inviting the friend to supper, praying for their friend, showing signs of concern or caring, and being able to let their friend go (e.g., move out of the house or community). The key informant offered the following description of Kate's fidelity to Renée:
Kate is very faithful to Renée.… Her faithfulness is that in the early years it was hard for Kate to let people in [to a relationship with her] she was very guarded. Kate was also very selective of who she would let be with her. Initially when people left, she would be very angry at you for leaving. Now she seems to have grown into a real maturity—she was able to support Renée in her decision to not live with her and move downtown. Kate just loves Renée, it is pure gift—and when she is with Renée she is there and enjoys her, and when Renée is not there she enjoys other people reminding her of Renée and their relationship. Kate has grown in a real freedom to love [Renée] and let her go.
Time to enjoy life: Celebration
Prevalent in every friendship story were times of celebration, tales of shared travels, and moments of humor. The funny and embarrassing times together were warmly remembered. It appeared that often the person with a developmental disability was the one who brought and/or permitted the expression of humor in the relationship. Humor was identified as a gift and an important characteristic in these relationships.
Renée: Kate has a great sense of humour, and I was quite attracted to that way of being, you like it when people are silly.… There is a photo at the house, I think there were eight of us and we had gotten a new bunch of bibs so we all have bibs on our head being sisters and you know, and Kate thought it was a hoot! Putting new people in the lift to teach them how to use the lift and what it feels like, and that was kind of a bit of a standing joke for us, and initiating people with syringes of water, right [to Kate], squirting them with water?
Celebrations and vacations formed other important moments in these friends' narratives. Stories of successful vacations and those gone awry were both fondly remembered.
Tomas: It was a fun trip to Calgary. We stayed in L'Arche Calgary for a while and then we stayed in a place not quite in the mountains but in the hills… it was a very pleasant trip.… We have been on holidays a number of times since then. We've been to Newfoundland together.… We've been to PEI together, and we've been to a cottage together.
Tomas: And we've been to the Netherlands and France together and Boston. So community holidays have been part of our relationship together.
Tomas: And do you remember where we stayed in Paris? Do you remember the name of the place we stayed in Paris? [smiling]
Harvey: The Three Ducks. [smiling]
Tomas: The Three Ducks was a complete dive, and we later learned that their motto was the cheapest beer in Paris, though we didn't know that at the time! [laughter]
You really supported me: Ways of helping
A central characteristic of these friendships was the variety of ways in which each friend supported the other. The practical and physical supports that the persons without a developmental disability gave to their friend easily stood out. This form of assistance was most evident in Kate and Renée's relationship because Kate was completely dependent on Renée and others for her care. In the other relationships practical support was offered to the friend with a developmental disability in smaller ways, such as reading a menu, telling the time, or helping to cook.
Loretta: Danielle is a good friend, we go out for dinner together, we have a good time, and I pick the video, it is my turn tonight, and what else? She goes to the hardware store.… she comes to G House and is helping me to cook.
A closer look revealed that the person with a developmental disability also provided support and assistance to his or her friend. These friends spoke of the importance of the emotional support expressed through kind words or gestures, affirmation, and encouragement.
César: That means a lot to me that you feel responsible for me and that you care a lot about me.
Stan: Yeah, I want to share what you are carrying…
César:… and you really supported me in my [job] selection.
Stan: Oh yeah.
César:… I wouldn't be able to do it if you weren't so faithful.
The act of supporting the other in his or her need was not separated from the friendship but, rather, was integral to the building of the relationship. This emerged as Renée spoke of the intimacy that developed between her and Kate as she helped with Kate's physical care, as Stan and César spoke about the process of making choices they helped each other through, as Danielle spoke about creating a home with Loretta, and as Tomas helped Harvey live well with other people.
The final theme in this category points to an essential characteristic in these relationships: the friends' ability to value differences in one another and, conversely, their ability to see their similarities beyond their obvious differences.
Whereas giftedness is often seen as the ability to do something well, these friends held a broader definition that included elements normally considered problems or dis-abilities. Here, a need for assistance was considered a gift that they have come to appreciate. The implication was that this gift, concealed as need, slowness, or unclear speech, was often seen as a request to enter into relationship.
Renée (to Kate): I think you teach [me] a lot about being at home, just because people have to slow down to be with you… I think one of the things that has been good is that sense that we sometimes have to wait for you to give an answer, which is a good reminder around communication in general.… [You] heighten that awareness that we communicate in different ways, so it has been good, the gift side of the challenge.
The following interview quote illustrates Tomas' appreciation of Harvey's gift, hidden in his sometimes awkward, sometimes playful, “rearrangement” of glib phases:
Harvey: Carol is like one, she is not, she got one set of values and we've got the other set of values. We're not like two peas in a pod, we can't mix onions with tomatoes.
Tomas: You can't mix onions and tomatoes.
Harvey: It's very hard to mix Carol with a good dressing! [laughter]
Tomas: One of the things I have enjoyed about you over the years, Harvey, is your incredible way with a phrase! [laughter]… and last night you wrote a speech to read at Allan's farewell, Allan is a friend who is leaving L'Arche, and you said Allan came to L'Arche and lived in various houses and he was happy and then he got married.
In addition to seeing the other person as different, the friends without a developmental disability spoke of moments when they realized that they were very similar to their friend. Often, this realization came during times of struggle, and recognizing this commonality brought the friends closer together.
César (referring to Stan's struggle to speak up for himself): I think part of the reason, Stan, it bothered me so much, was because it was my same problem.… I didn't like seeing [this in] you… you didn't hide it very much. You didn't feel you needed to, but that is what I was hiding from.… A lot of people affirmed me for being a people pleaser because I was doing things like working really hard and never stopping working to make people happy and not tending to myself.… I saw you kind of living out some of the things that I was trying to hide in myself.
This second category of findings includes the factors that facilitated the development of the friendships, such as sharing daily life, walking together through life's major passages, and remembering shared history together.
All four friendships originated in a shared living situation in one of the L'Arche homes. Although none of the friends lived together at the time of this writing, this initial, often intense experience of sharing in life's daily tasks and of finding ways to live together provided a foundation for the development of each of these friendships.
Stan: Actually, it is through living together that we got to know each other better, and just by spending time with him and helping him when he needed it, and to be open and just to be myself.
César: That's true… living together was something that was a real foundation for us.
Danielle: So friendships are formed [in the home], there is something about being in the house—there is an intensity when you are living in the house—when you move out of it you don't have that anymore. Now we get together for a coffee, or for the worship, or when there is community event, [these provide] a chance to continue our connection.
Life's passages. Each of the dyads identified major life passages that, when shared together, deepened the relationship. These passages included coming to the community, death, and sharing in positive life events.
The notion of being taught by a person with a developmental disability, common in L'Arche literature, was mentioned by three of the friends. This appears to reverse the traditional caregiver (dominant)/carereceiver (helpless) relationship. Recognizing that the person with a developmental disability has something important to give, and at times to teach, allowed for reciprocity in these relationships:
César (to Stan): You literally welcomed and formed me with Kim and Jill and Malcolm because there weren't any assistants (staff) who'd stay. In the first week that I arrived I was made head of house and Sarah [the acting supervisor] moved out so [it was] you, Malcolm, Jill and Kim who taught me everything, literally, about how to run the house and what the traditions of the house were.
Scattered throughout these stories were important moments in each of the friends' lives, such as grieving the death of a loved one, making life choices, marriage, or adopting a child. These friends' willingness to share these life events deepened their relationship and helped knit each friend's individual story into a shared story in friendship.
César: [You] came down to the funeral [of my sibling].
Stan: Yeah, it was hard, but it was also good because I was supporting César at the time, and it was sad for César because his sister passed away from cancer. It was hard, but it was good for us to know that we were there for him, and to really help him out by standing by his side… to show that we really cared for him. …
César: It meant a lot to have you there. I was surprised how much it meant to me, your presence was more than just nice; you were actually quite strong, and you have a gift for a gentle presence that was really essential for us. It was something that helped the whole family grieve… and for my father most of anybody, it was quite profound.
Sharing our story
Significant in each of these friendships, and comprising this category's final theme, is the mutual recollecting of the path walked together. Sharing memories were opportunities to re-discover meaning in past joys and struggles in light of their current story; they were also times for the friends to acknowledge their importance in each other's lives. The interviews were one occasion for this:
Danielle: So those were, just sort of, like, ongoing memories of dancing and music, and then I remember you came to Winnipeg.… At Christmas, and met my mom and my grandmother and…
Loretta: Your sister.
Danielle: Yeah, and the dogs, Sally and Boxer. Yep, and that was really good for me, and then we missed the plane! Do you remember?
Loretta: Oh yes, I remember that.
Danielle: And I didn't have enough money, and my mother had to come, and I was crying and…
Loretta: Awww. [sympathy]… Then we went to shopping, and we got souvenirs, and I got a ring and I lost it.
Danielle: Yeah, and then you wanted a cappuccino. Remember? And we drove all over the city looking for a cappuccino, and then the guy came and you asked for a Diet Coke! [laughter]
Loretta: Um hum.
Danielle: That was overall a good experience, and made me feel rooted in my family—so it was nice to have you there. Ahhh, do you remember the skunks?
L'Arche: A Community Context
In this category we identified elements in this L'Arche community that influenced the development of these friendships. This category was separated into factors that have encouraged and factors that have impeded the friendships.
Community aspects that encouraged friendship
Traditions and times of celebration in L'Arche played a large role in all of these friends' stories. These included events such as birthdays, anniversary (of person's arrival in community), celebrations, meetings, community weekends, celebration of religious holy days, and community vacations. In addition to participating together in these events, these friends were often involved in creating and maintaining many of these communal traditions.
César (speaking to Stan about what helps him to remember their story): You did that, a drama, and sometimes at community weekends … we have times for sharing our stories with each other and other people in the group.
Stan: I think that's how we [do it].
César: We call it faith sharing, reflecting on our lives with God, or sometimes it is just personal sharing.
Stan: Oh yeah.
César: The kind of standard way of doing things in L'Arche, right? [laughter]
César: And at Council [advisory committee], when we have some time we share a story, there [is a] spirit there and they understand our story… We usually talk about gifts [at each other's birthday celebrations].
Elements in the community's vision and values influenced these friendships by shaping the way they lived times of celebration, conflict, and the everydayness of life. The culture of the community reflected a number of shared values, such as valuing the gifts of everyone and, in particular, of the person with a disability, valuing celebration, and valuing a shared life together that appeared to influence these friendships.
Renée: It's understood in places like that (at L'Arche retreats and community gatherings), and in other places people just don't get it (the importance of speaking about my relationship with Kate).… I know that I am trying to witness to the value of each person… It can also be very frustrating to have people not see your gifts, eh Kate, because they are just so obvious to me.… I think that is part of why I would stay at L'Arche because I know I need the support of other people who have that vision as well.
The friends without a developmental disability spoke more directly about the importance of the community's vision while those with a development disability spoke more of the tangible expressions of this vision, such as times of renewal/retreat, times of prayer, and the struggle to get along with each other.
Loretta: I like L'Arche, it is very involved with it [community], cause at S House we have to get along with people, like, who you live with in the community of L'Arche, and get to know everybody. Because I like my friends, [they mean] a lot to me.
The community made efforts to involve all its members in its various committees, meetings, and decision-making bodies. For the friends, this resulted in an increase in the level of participation, frequent chances for contact and the opportunity to participate in each other's membership circle.
Renée (speaking to Kate): You are one of the Spirit Movers, which is our liturgical dance group.… You were part of the committee, when we were designing the new [community centre], to make sure that it was accessible. You do a lot of speaking and things in the community. You went to a recent gathering for young people with Jean Vanier [as a community representative].… Kate was part of [the] re-confirmation of my confirmed membership.
Another subtheme was the sense of belonging that came from these persons' membership in the community. As a person progresses through the stages of community membership, an affirming, and sometimes challenging, circle of friends is assembled. Becoming a community member involves an intentional choice to belong to the community and to commit to the community, the other members, and a close circle of friends. The commitment of membership that the friends made to each other and the community buttressed these friendships.
Harvey: I started my first process just being a “beginning membership.” Then I became “choosing membership.” Just a couple of years ago they just brought me to choosing membership and it was good.… It means that you are trying to make, to try and make new and better decisions for yourself and your life. I have learned from choosing membership that I choose the right things that go with the right aspects of my life.… It has always been [important for me]; I have always taken membership and everything very strongly.
Aspects of community that inhibited friendship
Apparent in responses to direct questions and indirectly from the struggles described in these friends' stories were aspects of the community that inhibited the friendships. These factors included the gap between the community's vision and the lived reality, the frequent shortage and turnover of assistants in the community, the busyness of community life, the transition from living with to not living with their friend that resulted in less contact, the tension of being in a position of authority over one's friend, and the lack of privacy in communal living that can strain individual relationships.
Renée: But the reality is that sometimes we are busy, or, so you don't have the time that it might take [to listen to Kate, or take time with her personal care].… Our other reality at L'Arche is just having a turnover of assistants, so there is that constant teaching of people.… I think that we're sometimes in situations that we would rather not be, around that, having people come for shorter amounts of time or whatever.… I am sure there are times when Kate thought, “Why are you [Renée as House Responsible] telling so and so they can help me with my bath? They just got here, or I had a fight with so and so and I don't want them helping me!”
César: Where it comes in is that, to be an assistant [staff] that is in a role to help support you, that's not hard for me to do, that was easy for me. But, to be your friend in times when I would feel that you would not speak up for yourself to me, when I wasn't trying to bully you [as an assistant], those are harder.
In the past researchers have pointed to the difficulty of including persons with developmental disabilities in their communities and suggested that friendships between persons with and without a developmental disability are unlikely alliances (Amado, 1993b; Brown et al., 1997; Lord & Pedlar, 1991). However, the findings of this study indicate that friendships between persons with and without a developmental disability do occur and can be reciprocal and meaningful.
These friendship stories echo Aristotle's conceptualization of friendship: choice, goodwill towards the other, recognition of the goodwill, and goodwill reciprocated. In these friendship stories, choice operated on two levels: choices made in the relationship and choices involving the community. For these friends there was the choice to live in the L'Arche community (although present for both, it was more apparent for the person without a disability) and the choice to recognize the gifts and goodwill of their friend. The goodwill present in each of these relationships took the form of respect, concern for the other's well-being, emotional and practical support, and affection. Apparent in the contours of friendship are both the diversity of expressions of goodwill, and the necessity for each friend to choose to acknowledge and accept the gifts offered by his or her friend.
The friends without a developmental disability, who were also in the role of caregivers, helped their friend in many expected ways, such as providing structure in their day, assisting them with their physical care, and helping with other daily tasks. This assistance was offered not only in response to the need of the friend but also with a desire to enter into a relationship that went beyond physical care. These friends' desire to include their friend with a developmental disability in the relationship reflects what Miller, Jordan, Kaplan, Stiver, and Surrey (1991) described as the search for mutuality, a belief that the other has something equally important to give in return and a recognition of their interdependence.
The dissimilarity of the friends' gifts did not prevent them from entering into meaningful reciprocal relationships with one another. What was important was how each came to know and value the other through their relationship. Taylor and Bogdan's (1998) sociology of acceptance echoes a similar sentiment:
A person is not determined by either the characteristics of the person or the abstract social or cultural meaning attached to the group of which the person is a part, but rather by the nature of the relationship between the definer and the defined. (p. 234)
These friendship narratives suggest that the relationships endured for 7 to 15 years because of the friends' intentional and continual choice to remain faithful to the relationship. A number of factors supported this fidelity, including frequency of contact, maintenance behaviors, community membership, and what was received in the relationship. Our findings support Kronick's (1996) conclusions and further suggest that community life, with its many opportunities for personal contact and involvement in common activities, offers a rich ground in which to develop friendships. The regularity of contact helps the friends remain committed to the relationship.
The findings suggest that it was often the person with the developmental disability who engaged in friendship maintenance behaviors, which included telephoning, extending dinner invitations, praying for one another, asking assistance, remembering important occasions, and offering support. Likewise, Kronick (1996) and Lutfiyya (1991) noticed similar occurrences in their explorations of friendships between persons with and without developmental disabilities.
Each of these friends held a recognized form of membership to the L'Arche community, and each had been involved in the other's membership circle (a group of community members who support the person while in the community). The community and the person's membership circle named friendships, carried the history of these friendships, and supported the friends to be faithful to each other. This community support was unique among caregiving settings and was vital to sustaining these friendships. Similar to Lutfiyya's (1991) findings, fidelity to the friendship was also facilitated by a sharing of common interests, the pleasure of remembering past adventures, and the joy of feeling known and accepted by another.
The relationships examined in this study were characterized by trust, life-sharing, respect, support, fidelity, and an affirmation of giftedness. As alluded to by Lutfiyya (1993) and Walmsley (1993), these characteristics involved moving beyond dichotomous caregiver/carereceiver labels to allow for the possibility of a different kind of relationship. As the friends discovered that the community was a place where they were valued for their distinct gifts, where they could connect with others, and where they felt a sense of belonging, each friend grew emotionally and spiritually. The community's vision, values, and structures provided a supportive environment for friendships between persons giving and receiving care. The community's membership circles called its members to reciprocal relationships, supporting these friendships and incorporating the friendship stories into the community's history.
Our exploration of these friendships stories suggests that caregiving relationships, when viewed as reciprocal and supported by a community, can become friendship. We conclude with the proposition that cultivating connections, fostering friendships, and constructing caring communities is relational work that is essential and beneficial for us all.
Authors:Colin Pottie, MEd, Doctoral Candidate (email@example.com), Virginia Commonwealth University, Psychology Department, 808 W. Franklin St., PO Box 842018, Richmond, VA, 23284–2018. John Sumarah, EdD, Professor ( firstname.lastname@example.org), Department of Education, Acadia University, Wolfville, Nova Scotia Canada B4P 2R6