A case study of an intentional friendship between a volunteer and adult with severe intellectual disability: “My life is a lot richer!”

ABSTRACT

Background Friendships between people with and without intellectual disability remain elusive. Little is known about factors that support the development of such friendships and what services can do to promote the likelihood that contact will develop into friendship.

Method A case study approach was used to explore the qualities and development of a long-term friendship between 2 women, 1 of whom has severe intellectual disability. Qualitative methods of data collection and analysis were used including interviews and field notes from participant observation.

Findings The relationship progressed through 3 stages of introduction, consolidation, and autonomy supported by the working practices and culture of the disability support organisation. Individualised activity, the role of a connector, and a culture of positive expectations underpinned the growth of the friendship.

Conclusions Friendships do not happen by chance but require thought, attention, dedicated resources, and commitment to long-term outcomes to be achieved.

KEYWORDS:

• friendship
• social inclusion
• individualised activity
• participation
• service culture
• severe intellectual disability

Introduction

Friendship is an ambiguous concept challenging easy definition but from a philosophical point of view is understood as integral to a good quality of life. Friendships of all kinds, each with their own set of complications, make valuable contributions to our lives. Friendship between a person with and without intellectual disability has a particular set of challenges to negotiate, which, because they are rare, are poorly understood. Assumptions by people unfamiliar with such friendships are that they lack the depth and reciprocity of more familiar friendships (Reinders, 2008). In this small exploratory case study we challenge such assumptions and demonstrate the ways in which the lives of the two people involved were enriched through their relationship with one another. This case study was designed to identify the qualities of a friendship between two women, one of whom has a severe intellectual disability, and understand how their friendship flourished. This knowledge can be used to inform social connection and friendship-building endeavours by community service organisations. The two women have been friends for over 10 years: Dorelle, a retiree in her mid-70s, and Heather, a 50-year-old woman with severe intellectual disability who requires a wheelchair for mobility and doesn’t communicate through speech. They met through Dorelle’s volunteer activities at an inner-city day service for people with disability.

Friendship unfolds with “no predetermined instructions for assembly or project for growth” (Vernon, 2005, p. 6), and is characterised by unique and self-defined relationships. What constitutes friendship is best understood subjectively from the perspective of participants (Lutfiyya, 1993), which is to say a friendship becomes a friendship when those engaging in it define it as such. Different qualities have been attributed to friendship, including mutuality, equality, and shared interest (O’Brien & O’Brien, 1993); a sense of caring and identification with the good of the other (Hunt, 1991; Reinders, 2008); and benevolence, reciprocity, and vulnerability, understood as being open to personal change (Wadell, 1989).

Friendships occur for different reasons and serve different purposes. Aristotle differentiated three types of friendship (Vernon, 2005): where people are useful to each other (such as work colleagues), where there is some shared pleasure or enjoyment, and where people love each other because of who they are in themselves. It was this third type of friendship where “it may be their depth of character, their innate goodness, their intensity of passion or their simple joie de vivre” (Vernon, 2005, p. 3) that Aristotle deemed the most important and more likely to be sustained over time.

Friendships between people with intellectual disability and those in the wider community remain elusive (Kozma, Mansell, & Beadle-Brown, 2009). People with intellectual disability continue to live in a distinct social space (Clement & Bigby, 2009) with a critical boundary operating between themselves and others (Amado, 2014). Their social networks are small and often restricted to paid staff, families, and peers with disability (Amado, 2014; Bigby, 2008; Emerson & McVilly, 2004). For example, one Australian study found 62% of group home residents relocated from an institution had no one outside the service system who knew them well or monitored their wellbeing (Bigby, 2008). In a review of international research over a 10-year period, Verdonschot, de Witt, Reichrath, Buntinx, and Curfs (2009) reported that people with intellectual disability had an average social network of 3.1 people, with at least one of those usually a paid staff member. A UK study of 1,542 people with intellectual disability found that, over a 4-week period, participants reported a mean of two activities shared with friends with intellectual disability and none at all with a friend without disability (Emerson & McVilly, 2004).

Friendships are strongly embedded in the eight domains of quality of life conceptualised by Schalock et al. (2002), both as integral to the domain of interpersonal relationships and an enabler of other domains such as social inclusion and emotional wellbeing. For people with intellectual disability friendships are an important avenue for confiding relationships and opportunities to exercise some autonomy (Ramcharan & Grant, 2001). They offer companionship, acceptance as an individual beyond the disability, and opportunities to be actively engaged in the world sharing interests with others (Amado, 2014; Ashman, Suttie, & Bramley, 1995; Bigby, 1997; Matheson, Olsen, & Weisner, 2007), all of which matter to individual wellbeing.

Some of the quality of life outcomes associated with friendship are mirrored in volunteering, which represents a fine balance between altruistic aims and personal benefit (Dolnicar & Randle, 2007). Within Australia, approximately 36% of the adult population are involved in some kind of volunteering activity with the highest number of hours contributed by the 2.9 million volunteers aged over 65 years (Australian Government, 2011). In bringing together people who may not otherwise have the opportunity for contact, volunteering offers the potential to increase the social inclusion of those who are socially isolated. Being a volunteer helps reduce feelings of personal isolation, offers people new skills, builds social contacts, and supports a greater sense of self-worth (Volunteering Australia, 2012). Organisations with well-managed volunteer structures providing support and ongoing skill development are more likely to successfully engage older volunteers (Warburton, Paynter, & Petriwskyj, 2007). One Australian study found, for example, that older women volunteers in particular, many of whom have a history of feeling devalued in their paid work, are best approached directly to take on new tasks and then be supported as they learn the new skills (Warburton et al., 2007).

In conclusion, people with intellectual disability remain socially isolated despite relocation from institutions to community settings, and friendships with people without intellectual disability are rare. Some disability day support services are moving toward models of individualised service delivery, relying on volunteers as well as paid support workers. In doing so they create opportunities for meaningful contact between people with and without intellectual disability, enhancing the prospect of increased social contact and perhaps friendship between the two groups. Evidence suggests that meaningful contact, facilitated by organisations, that creates opportunity for frequent personal communication, promotion of equal status, and cooperation in working towards shared goals leads to socially inclusive outcomes (Novak & Rogan, 2010; Pettigrew & Tropp, 2006). Structured tasks requiring cooperation are vital, when the growth of the relationship cannot depend on conversational ability alone in, for example, situations where one party has severe communication impairment (Antaki, 2012; Novak, Feyes, & Christensen, 2011). Doing things together enables personal interaction and the opportunity for potential friends to appreciate each other as unique individuals.

The friendship described here developed with the support of structured tasks and volunteer support available in a day service. The qualities of a friendship between two women, one of whom has a severe intellectual disability, and how their friendship developed are detailed. The research questions were

1. What are the qualities of friendship between a person with severe intellectual disability and a person without intellectual disability?

2. What factors supported the development of the friendship and enabled it to be sustained?

Method

Research design and theoretical grounding

The theoretical lens was social constructionism (Crotty, 1998), which adopts the stance that social phenomena can be understood in multiple ways depending on the experiences and perceptions of key players. Consistent with this approach, and in order to gain an in-depth understanding of the multiple factors at play in friendship, a case study methodology was used (Yin, 2009). Case studies are suited to exploratory research questions that ask what with a view to developing hypotheses and propositions for further enquiry (Yin, 2009). This is particularly the case when the phenomenon under study is rare or unusual as are the circumstance and growth of friendships between people with and without intellectual disability. Qualitative methods of data collection and analysis were used. Ethical approval for the study was given by the Human Ethics Research Committee of La Trobe University (14-033). All the participants and organisations have been de-identified through the use of pseudonyms. No formal relationship exists between the researchers and the organisation that proposed and contributed financially to the research. The organisation, in its quest to develop best practice supported by independent research, approached the Living with Disability Research Centre, La Trobe University, to undertake the study.

Participants and recruitment

Participants were identified and recruited by invitation from the chief executive officer of the organisation. Initially, consent was obtained from Dorelle and Heather to participate in the study and later from all other informants, including both organisational staff and facilitators of the community groups observed. Heather was unable to give informed consent and, following the usual procedures for decision-making in her life, consent was obtained from her mother for her to participate. Other participants were Heather’s sister, two staff members from the day service who were interviewed, several other staff members, and participants in community groups whose comments were recorded as part of the two periods of participant observation. All participants had seen the friendship between Heather and Dorelle develop or knew one of them well.

Data collection and analysis

Semistructured interviews, approximately one hour in length, were conducted with two day service staff, and Heather’s sister. Several attempts were made to meet with Heather’s mother, who cancelled each time due to illness. A 2-hour recorded interview was undertaken with Dorelle, and the second researcher met with her for lunch and conversation later. Interview questions were open ended and non-directive seeking information about the nature of the friendship between Heather and Dorelle, how it had developed and changed over time, and what had influenced it from the interviewee’s perspective. All interviews were recorded and later transcribed by the second author. Two meetings were held with a support worker and the CEO, which were 1 hour in length and not recorded, but extensive notes were taken at the time and later transcribed. The second author was a participant observer in two periods of group activities with Heather and Dorelle, a coffee club that met in a shopping centre (2 hours) and a church social group (3 hours). Field notes were written after each of these about the interaction and communication observed between Heather and Dorelle and their interactions with other group members. In addition, a diary kept by Dorelle that contained mainly factual notes about her contact with Heather, and client and other agency records about Heather held by the day service were reviewed.

Grounded coding techniques described by Charmaz (2006) were selected as a way of developing an analytic frame within which to build the analysis. Because this was an exploratory study that sought to understand what was happening from each participant’s point of view, coding was inductive and open to all possible theoretical directions. Coding began on a line-by-line basis, with the initial descriptive codes becoming more focused over the course of analysis. Codes were related back to the research questions about how friendship looked, what drove it, and how it changed. For example, Dorelle responded to the way people related to one another in this environment: “I was struck by the loving kindness of staff and thought I wanted to be part of that.” This was initially coded as “first impressions of warmth.” When combined with other statements she made it was interpreted within a process of focused coding as attraction. Codes were then displayed within a time-ordered matrix (Miles & Huberman, 1994) with memos against them in order to describe the sequence of events and to determine features in the environment that supported their development. For example, attraction was seen as the first step of Dorelle’s engagement, which had grown out of her perception that the environment was welcoming.

Codes were refined in discussion between the two authors and initial findings shared with staff from the service as a form of member checking for credibility. NVivo 9 was used as a tool for management and retrieval of data, with tree maps being developed to reflect analysis. The findings had a sense of “ringing true” (Miles & Huberman, 1994, p. 279) with staff and with the research literature about the meaning of friendship for people in the wider community. The use of observation as well as interviews with a range of people with different connections to Heather and Dorelle enabled the data to be triangulated and thus supported its confirmability.

An exploratory case study design was used to describe an unusual phenomenon. As with all qualitative research the findings presented here cannot claim broad applicability but rather identify patterns and dilemmas for further exploration and a point of comparison for future studies.

The findings are in three parts: first, background information about Heather and Dorelle, then a descriptive account of the qualities of their friendship, and, third, an analysis of the stages through which their friendship progressed and the factors that supported its development.

Findings

Background

Dorelle is single, lives alone, and has no children. She spent her working life as a bookkeeper but experienced a sense of being undervalued in predominantly male workplaces and lacked confidence in her ability to be a “people person” rather than a “numbers person.” When she retired she wanted to be involved with others and thought participation in meaningful volunteering work might be one way of avoiding social isolation. When she came to the day service she wanted the opportunity to be “accepted by others … to matter to someone else … to give and receive affection and intimacy … and [have] someone to touch.”

Heather had lived at home with her parents until she was 29 years old when she had moved into a group home. Heather has Rett syndrome and is now unable to walk or communicate with words. She has highly impaired motor skills and is reliant on others to help with personal care and tasks of daily living. Heather flourishes in environments where she gets individual attention and, as Francesca, her primary support worker, said, she “gets lost” or is “not noticed” when part of a group. Heather may not be able to talk at all but was recognised as “a gentle soul people warm to” by one staff member. In recent years contact with her family has reduced; her father died and her mother, who has early dementia, is unable to travel to see Heather. Apart from her family, Dorelle is the only person outside of the service system who knows Heather well or monitors her wellbeing.

Qualities of their friendship

Friendship is an abstract concept, embodied through the things that people do and experience together. For Heather and Dorelle these included nurturing, affection, shared activity, reciprocal participation, opening possibilities for change, advocacy, and community connections.

Their friendship created the chance to nurture. As Heather’s sister explained, Dorelle “paid a great deal of attention” to Heather’s appearance, trimming her nails, and making sure her clothes were clean. For Dorelle, nurturing another person in this way allowed her to experience something that was missing in her own life. She said about her friendship with Heather, “my life has been a lot richer. God yes! I never had enough faith in myself that I would be up to all this. Good enough for this. I don’t deserve that level of trust.”

Similarly, staff commented that the friendship gave Heather the chance to nurture another person. The service manager said,

I remember it so clearly as we all got so excited about it. Heather has great difficulty in moving any part of her body with any kind of certainty or control. Dorelle was coughing this particular day and Heather stopped what she was doing and reached out – very difficult for her – with her right arm and put it up onto Dorelle’s shoulder. Now, this took an incredible amount of effort for her to do that. … That is not an accidental thing at all. It is a deliberate attempt by Heather to show some comfort and compassion to Dorelle. Now, I have known Heather for 15 maybe 17 years and I have never seen her do that with a paid staff member. Never.

Through nurturing each other came opportunities for mutually shared affection, captured in this extract from the field notes:

Dorelle several times gently stroked Heather’s cheek, pushed back her hair or kissed her hands. She calls her “Hettie” and uses terms of endearment like “darling” and “sweetie” … Heather holds Dorelle’s hands at times, and looks at her often. Smiles.

Participation in activities together, such as swimming, a coffee club, church friendship group, and a choir, provided opportunities to share enjoyment in each other’s company, without the need for spoken conversation. Doing things together also enabled both of them to participate in groups that they may not otherwise have done. As the field notes indicated, Dorelle became Heather’s voice in the church group:

A game was being played with two teams across the table and Dorelle said, “Heather and I will ask the first question.” She suggested to Heather what their question might be. This was followed by bingo with Dorelle moving Heather’s hand so she could place the counter on the number.

Dorelle was described by several staff as shy, and Heather acted as a conduit for her participation in groups. As one staff member said, “I don’t think she’d go along to something by herself but this way she goes with a friend and they rock up to a café or whatever together.” The leader of the community group they attended noticed this too and said she thought that Heather gave Dorelle a focus for conversation as well as a friend to go along with, as the following field note extract shows:

As Dorelle moved away Jenny [group leader] said to me that she thought Heather provided Dorelle with a way of being part of a group like this. “By bringing Heather along she has a reason for engagement too. I think she would find it hard to come along on her own.”

Their friendship had enabled both women to take risks, which by exposing their vulnerability had opened up possibilities for change. A staff member said about Dorelle, “she used to be so different to how she is now.” She described Dorelle as having a new identity as a “people person” who was competent, appreciated, and someone to be consulted by others about Heather’s preferences. She reached this point by being encouraged to take risks, such as holding Heather afloat in the water, visiting Heather at home when she was lonely, and managing the seizures. Similarly, Heather changed becoming, as described earlier, someone who could nurture another person, and, according to staff, able to distinguish between friendship and a paid carer. Heather’s interactions with Dorelle challenged her family’s perception of her as totally dependent. As her sister said,

Perhaps we looked on her as so dependent we were passive with her … but her response with Dorelle is just delightful. She leans towards her, focuses on her, and responds to her voice. Someone has found a way of tapping into something in Heather.

The friendship was characterised by the new role Dorelle adopted as Heather’s advocate within the community groups they attended, at the day service, and in Heather’s group home. She passed information on when necessary, spoke out when it was needed, and kept in regular contact with Heather’s mother. The field notes recorded, for example,

Dorelle was telling me about problems they had had with group home staff who don’t wash the towels. “These casuals who just don’t provide the same level of care.” She said she’d had times when yesterday’s dirty towels were still in Helen’s backpack. “I’ll have to remind them again!”

The friendship brought both women an increased sense of community connection. It enabled Heather to participate in mainstream community activities, meet new people such as Dorelle’s neighbours, and be able to bring a friend along to events in her own life. Dorelle gained a sense of being accepted and valued at the day service and within the community groups. For example, Dorelle meets other volunteers at the regular events held by the day service and felt a sense of connection with them through their shared involvement in the lives of people with intellectual disability. Dorelle said too that as Heather’s friend, she is often in the spotlight as “their star performer.” The field notes recorded, for instance, Dorelle’s invitation to attend the local city council volunteer awards night after being nominated by the volunteer coordinator.

From volunteering to friendship

At the time of this study Dorelle and Heather had known each other for 11½ years. Their relationship had moved through three stages as it progressed from a volunteering relationship into close friendship. Progression through the stages of introduction, consolidation, and autonomy was supported by the working practices and culture of the day service and are summarised in Table 1.

Table 1. Stages in relationship development from volunteering to friendship and supportive organisational features.

Stages of relationship	Supportive features	Centre feature of relationship
Introduction (17 months)
Attraction Affection Bonding	Hospitable, appreciative environment that values and supports volunteering Opportunity for meaningful contact Connector role of worker	Engagement in and commitment to “hands-on” volunteering
Consolidation (18 months)
Familiarity and time Contextual skills	Individualised coaching Shared activity Support over time	Confidence, skill formation, sense of personal expertise, and competence
Autonomy (8.5 years continuing)
Dyad boundary formation Advocacy Independent activity	Individualised and personalised planning Inclusive planning and decision-making processes Shared vision prioritising relationship building (taking risks) Worker as soundboard and back-up support	Friendship

Introduction

The introductory phase included attraction, affection, and bonding. Attraction was to an idea and a place rather than to a person. In July 2003, when Dorelle began as a volunteer bookkeeper at the day service, she said she was attracted to “the loving kindness of staff and volunteers towards the Heathers of this world [and knew she] wanted to be part of that.” On its own, the attraction Dorelle felt to the values she saw being enacted would not have been enough to move her from her bookkeeping role and into direct contact with Heather. Twelve months later the role of “connector” played by Francesca, Heather’s primary support worker, created opportunity first for fleeting encounter and then meaningful contact between the two women. Francesca, who befriended Dorelle when she was doing volunteer bookkeeping, had a “hunch,” based on her recognition of their mutual needs, that Dorelle and Heather would be compatible. Francesca said:

I was thinking she [Dorelle] would be able to help us. They [Heather and Dorelle] would get along just so well. I knew they would and, well, you have to match people up don’t you? I knew she had no one at home and there was more for her within this organisation … I am a bit of an opportunist like that and I’ve done it with others too.

Dorelle recalled:

Francesca asked if I would mind sitting with Heather and a couple of others while she did some timesheets or something … the next week I brought an old tape recorder from home and I played them Peter and the Wolf and Mozart. They loved it!

Seeking to develop their contact further, in February 2005 Francesca asked Dorelle to come to the swimming pool as “bag lady” for the swimmers and explained:

Then after a couple of weeks I said, look, why don’t you get in and swim with Heather? She said, I’d be too nervous, and I said, I’ll be right in the water next to you.

Francesca’s gift for bringing people together was supported by the culture of the day service. She felt empowered to use her own initiative to create opportunity for meaningful contact, putting into practice the organisational vision that states, “We believe that people with a disability should be able to live in an inclusive community, supported by people who genuinely care for them, and have the same opportunities to participate in community life.”

A process of bonding began early in the relationship, stemming from Heather’s response to being held in the water by Dorelle. Dorelle described how her nervousness and lack of confidence in communicating with Heather changed as Heather responded with indications of affection, allowing herself to be “whooshed through the water while I sang songs to her from my childhood.” She said:

I think in a funny way I just fell in love with her. Not anything dicey! But I felt that love for her. You’d pick her up and you’d hold her up and she actually put her head down on my shoulder and fell asleep. Imagine! If that’s not trusting. It was beautiful.

Dorelle continued going to the pool each week, gradually shifting her time as volunteer bookkeeper to hands-on volunteer with Heather. In the background, Francesca took other opportunities as they arose to encourage them to spend more time together in activities that Heather had indicated she enjoyed, and in August 2006 they began taking part in independent activities unsupervised by staff. Francesca said:

One of the other ladies had participated in choir practice on Tuesdays but changed her mind and there was another opportunity for Heather and Dorelle to do something totally by themselves [i.e., individualised activity away from the group]. So I suggested that and Dorelle started pushing Heather over there each week as it was in Dorelle’s local community.

Dorelle realised that she had something important to offer, referring to these early encounters, “well I thought, I can give her affection. I had the chance to give affection! Everyone needs to do that and she was definitely willing to receive it.”

Consolidation

As they shared activities together Dorelle and Heather learned to communicate. With Francesca’s help, Dorelle’s confidence in responding to Heather’s needs increased as she learned the practical skills she needed. Francesca used interpretation of cues and behaviours rooted in real contexts to teach Heather about providing support, ranging from, initially, “how to hold her head up in the water” to how best to manage Heather’s seizures and understand the subtlety of her communication. She said:

Dorelle understood that she had to be Heather’s voice when she took her somewhere. I used to show her, like, if people in the group were talking to Heather through Dorelle then very gently, of course, I used to say to Dorelle just put your head towards Heather and ask her directly. Then others will do that too. Redirect what they say. Then people will learn to talk directly to Heather. It wasn’t easy at first but got easier over time.

Shared mutually enjoyed activities allowed them to develop rapport and ways of communicating that did not depend on verbal communication. Their time together grew as they began to attend a choir together, formed Heather’s coffee club in a nearby shopping centre, where people who knew them would call in for coffee, and attended a “Gold Group” friendship circle at a local church.

The consolidation of their relationship occurred as Dorelle increased her understanding of Heather’s needs and they found ways of expressing themselves to each other. As Francesca remarked,

Look how long it took for me with Heather and Dorelle. Months! It took months to build the connection and friendship. When they are with someone who is non-verbal it takes a lot of support to help the volunteer. For someone like Heather they will sit there and think, is she happy? Am I doing the right thing here?

A commitment to the long haul of consolidating relationships was embedded in the work practices and culture of the day service, which prioritised long-term engagement with service users, their families, and volunteers. Structures such as regular volunteer gatherings support them to get to know one another, feel part of the organisation, be relaxed around staff, and feel “at home” within the premises. For example:

We returned to [the day service] and Dorelle took me through the staff offices chatting with several people about Heather’s cold hands that day. My impression was how very much at home here Dorelle was. She got the key to unlock the book cabinet to find a pamphlet she wanted me to have. When she couldn’t find it she went to find Damien [services manager] and they both hunted together. “I am sorry Damien to drag you out of your meeting but I wanted to find this.” He suggested they go get his copy and photocopy it.

Autonomy

This phase of the relationship saw the development of its own dyadic boundary, reaching the point where it no longer depended on the encouragement of others to grow. One form of boundary formation was the growth of possessiveness and exclusivity described by Dorelle:

I had a sense of being in control … I just took over like I came up with the house [group home] having to put Heather’s swimsuit on before she came rather than us do it. … I have the emails here that is my trying to get things to the attention of Patricia [group home manager] letting them know about what things have to be adjusted … I was getting rather possessive of her at times. I used to grab Heather away from anyone else who was pushing her, you know.

Dorelle’s role as a key support person for Heather was recognised and appreciated by Heather’s family, as she kept them informed about the small details of Heather’s life. Nevertheless, Dorelle’s presence created some dilemmas for the family. Heather's sister suggested that the relief Heather’s mother felt about another person being involved in Dorelle’s life was juxtaposed with a sense of loss that she could no longer do it herself and had to leave the care to another person. She wanted to “be there for Heather but lessened her visits because she was so upset because Heather was not too sure who mum was anymore.” Heather’s sister believed there was risk in this type of close relationship for the person with disability, saying,

Well, if that person [volunteer] burns out for some reason, it gets too much there is a risk of more damage than help done in the long run. … It is easy to come in and go full on feeling gratified because you are helping and that you are with someone who is enjoying your company. But [you have] to be able to do this at a reasonable pace, and at a pace you can maintain over time.

The day service staff recognised and nurtured the relationship by adapting their own roles to recognise those now occupied by Dorelle. Francesca, for example, described herself as becoming more of a “sounding board” to Dorelle. Staff acknowledged Dorelle’s commitment and her expertise about Heather’s wellbeing by including her in planning and decision-making about Heather’s program of support. For example, prior to the interview with Dorelle one staff member suggested to the researcher,

Other people have come in and tried to tell Dorelle what to do … She gets irritated when other people think they know better than she does what is better for Heather or what she should be doing. The main thing is to listen to her and let her tell you about what she has learned and her experiences with Heather.

Discussion

It can be difficult for people who are not familiar with intellectual disability to imagine what a friendship between someone with and without intellectual disability might look like (Reinders, 2008). This case study has demonstrated such friendships are both valuable and complicated. Dorelle and Heather’s relationship had all the hallmarks of genuine friendship. It grew out of their shared interests and needs and had an inherent reciprocity, mutual caring, and identification of the good of the other (O’Brien & O’Brien, 1993; Vernon, 2005).

It is not possible to understand the real meaning of the friendship for Heather, but there were indicators of an improved quality of life with enhancers such as the opportunity to engage in individualised activity, to be nurtured, have her wellbeing monitored, companionship, and enhanced personal dignity (Schalock et al., 2002). For her part, Dorelle was changed in many ways by the experience of this friendship; it challenged her own negative self-perception and gave her an opportunity to nurture another and to matter to someone else. She reflected on the experience of beauty and love that she encountered in this relationship. In first becoming a volunteer Dorelle had been seeking meaning in her life and a desire to belong; these are basic human needs that are shared by people with and without intellectual disability, which were embodied in their friendship.

All friendships are unique and there is unpredictability as to how they develop over time. This friendship did not happen by chance. This case study illustrates some of the effort that needs to go into tilling the soil, when a person has an intellectual disability, to give the seeds of friendship an opportunity to grow. The organisation provided a culture in which Heather and Dorelle could get to know each other and Dorelle could learn the skills she needed in order to respond to Heather’s needs. Some implications for organisations desiring to foster intentional relationships that might develop into friendships, and build social inclusion are clear from this case study. First is the creation of an attractive environment for volunteers, where they will want to be part of something that holds positive expectations about the potential for inclusion of people with intellectual disability. Being part of an environment that holds possibilities for meaningful contact is important to positive attitude formation (Craig & Bigby, 2015; Makas, 1993; Novak et al., 2011) but not enough on its own. Second is giving attention and resources to the actual practice of supporting connections to be made. In this case, this included the employment of a volunteer manager tasked with building confidence, rapport, and a sense of belonging among volunteers, and a culture that supported the initiative of natural connectors such as Francesca. Altruism and self-interest underpin volunteering (Dolnicar & Randle, 2007), and as demonstrated in this study, successful outcomes require that organisations create opportunities for both meaningful activity and personal growth. Dorelle, like many older female volunteers who lack confidence in their skills, needed to be directly approached and supported (Warburton et al., 2007). The bond between Dorelle and Heather was purposefully orchestrated by supporting participation in an individualised activity, initiating introductions, providing contextually based interpretation of cues and behaviours, and modelling the processes of person-centred active support described by Mansell and Beadle-Brown (2012). Those orchestrating these processes slowly moved out of the way, enabling Dorelle, the volunteer, to grow in confidence.

One of the staff, Francesca, played a key role having many of the characteristics of a “classic connector” with a “special gift for bringing the world together and an instinctive and natural gift for making social connections” (Gladwell, 2002; cited in Cain, 2012, p. 62). Other studies have demonstrated similar approaches to nurturing the growth of relationships and the necessity of shared tasks or activities when one person has intellectual disability (Antaki, 2012; Stancliffe, Bigby, Balandin, Wilson, & Craig, 2015). Few, however, have taken a longer term view that traces regular contact or a friendly relationship to friendship. This case study demonstrated that consolidation of a relationship required commitment of resources over a lengthy period of more than 3½ years to enable the confidence, sense of personal expertise, and competence of the partners in the relationship to grow.

The case study highlights some of the dilemmas disability services face in supporting the change from volunteer to friendship, and more active engagement in the life of the community by their service users. This particular service put considerable energy into training volunteers to provide support, allowing them to spend time unsupervised by paid support workers and encouraging them to take on an advocacy role. All of these involve potential risks to the people to whom they owe a duty and to their own reputation. Heather, for example, had specific healthcare needs, such as management of seizures, which Dorelle managed unsupervised by staff. Dorelle and Heather went out alone together, to cafes or strolling through the local neighbourhood. Dorelle became the conduit of information between the day service, family members, and the group home. As she moved into the role as advocate she was at times highly critical of the group home care, making direct contact with staff when she thought Heather’s personal care was being compromised. Although having an advocate and someone to monitor wellbeing reduces risk of harm (Robinson & Chenoweth, 2011), it also has the potential to create tensions between services. Risks such as these are inevitable if people with severe intellectual disability, such as Heather, are going to be socially included and have relationships with community members beyond the service system. The challenge lies in recognising, managing, and sharing risk rather than avoiding it (Green & Skyes, 2007).

A crucial step in the development of the friendship described in this case study was the point at which it became an autonomous relationship within the organisation’s broader structure. Minuchin (1974), in his work with families, described the formation of bounded relationships as subsystems. He noted that such systems develop their own rules and roles for each individual in regard to each other and the outside world, describing how they can create tension if the way they function is at odds with the broader system in which they are encompassed. This case study highlights potential tensions between the authority of Dorelle as Heather’s friend, staff, and family members. For example, Dorelle attended planning meetings as an advocate for Heather. In this organisation staff members were prepared to defer to her recommendations and include her as a partner in their decision-making processes. Given the power of professional boundaries and tendency of staff to take on the role of “expert” (Martin, Currie, & Finn, 2009), such deference may not flow so easily in many disability organisations. Managers of this service felt they handled potential tensions well through careful recruitment and ongoing training of staff and volunteers. Nevertheless, the possessiveness Dorelle described highlights the need for services undertaking this particular model of service delivery to be prepared for the consequences of autonomy. Possessiveness and exclusivity are not normally an issue for organisations because these ideas run counter to professional boundaries, but the role of friend may well encompass such sentiments.

A final consideration to be drawn from this case study is the importance of individualised activities and personalised planning in the building of rapport between people with and without intellectual disability. Dorelle and Heather shared the sort of activities that mirror ordinary lives. Dorelle did not get to build a close rapport with Heather by being part of a large group of people with disability sitting together at McDonalds. Typically, in these scenarios, staff remain in charge, decide what is to be eaten, and the volunteers have little opportunity to bond with those with disability. In contrast, they went places, on their own, together, and participated in the kinds of things that friends do together.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCiD

Christine Bigby http://orcid.org/0000-0001-7001-8976

Additional information

Funding

This research was supported by an inner-city day support service for people with intellectual disability. The views expressed herein are those of the authors and are not necessarily those of the disability support organisation who commissioned the research. No restrictions have been placed on free access to or publication of the research data.