Community participation and inclusion: people with disabilities defining their place

Abstract

Disability‐related public policy currently emphasises reducing the number of people experiencing exclusion from the spaces of the social and economic majority as being the pre‐eminent indicator of inclusion. Twenty‐eight adult, New Zealand vocational service users collaborated in a participatory action research project to develop shared understandings of community participation. Analysis of their narratives suggests that spatial indices of inclusion are quiet in potentially oppressive ways about the ways mainstream settings can be experienced by people with disabilities and quiet too about the alternative, less well sanctioned communities to which people with disabilities have always belonged. Participants identified five key attributes of place as important qualitative antecedents to a sense of community belonging. The potential of these attributes and other self‐authored approaches to inclusion are explored as ways that people with disabilities can support the policy objective of effecting a transformation from disabling to inclusive communities.

Keywords:

• community participation
• social inclusion
• social policy

Introduction

I guess I know the outside of Invercargill, but not much of the inside. (Marie Meikle; 4 June 2004)

Marie is 28. She had lived in Invercargill, a small rural town on the coast of New Zealand’s South Island, for 10 years before her involvement in the Community Participation Project. As part of the project Marie volunteered to author her own story, narrating her experiences of living in the community as a person with a disability. The researcher supporting Marie’s narration suggested that they might begin the process of framing her story over a cup of coffee. After the awkwardness of not knowing what coffee to order had passed, Marie disclosed that it was the first time she had been in a coffee shop. Marie preferred the large, busy mall, where her invisibility and more obvious cues to appropriate action made her feel less exposed. The story Marie wrote, however, was full of hope, signposting a journey symbolised by our exchanging the anonymity of the mall for the intimacy of the coffee shop. The journey Marie aspired to was one that took her from being an outsider looking in on her community to contexts which affirmed her place within the social fabric of a small, rural New Zealand town.

Marie’s personal journey finds expression in the trajectory of disability‐related public policy, and especially its contemporary emphasis on community participation and social inclusion. Current policy is informed by the social model of disability, which identifies structural barriers to participation as socio‐political disablers (Oliver 1990) and interlaced notions that an ability to participate in the spatial, economic, political and social life of one’s community is a prerequisite to citizenship (Ryan 1997). Hall (2004) has argued that reducing the number of people experiencing exclusion from mainstream society is the unifying principle of social policy in the UK. Civil rights and social inclusion bookend four principles identified by the Valuing People White Paper as instrumental in people with disabilities living ‘full and purposeful lives’ (Department of Health 2001, 76). The New Zealand Disability Strategy is the White Paper’s social policy equivalent in New Zealand. The vision at the heart of the strategy is a transformation from a ‘disabling to a fully inclusive society’, with progress similarly benchmarked against the participatory presence of people with disabilities in mainstream activity (Minister for Disability Issues 2001, 1).

It is still possible, however, to detect the threads of antecedent social policy within the inclusion discourse. The New Zealand Government imposed a moratorium on institutional admissions in 1974 and, in keeping with international trends, finally announced a policy of community living for people in long‐stay institutions in 1985 (O’Brien, Thesing, and Capie 1999). This moment represented a rapid and radical departure in the disposition of the state towards institutional segregation as the most appropriate social policy response to the welfare needs of people with an intellectual disability. The philosophies of normalisation and social role valorisation galvanised the residential reform by de‐emphasising the unique characteristics of impairment and elevating the importance of the presence of people with disabilities in the ordinary spaces and rhythms of community life (Buell and Minnes 2006; Perry and Felce 2005) In the process of depopulating total institutions ‘the community’ became an epithet for places that looked least like the segregated spaces that were the historical experience of people with disabilities. Milner and Bray (2004) argued that this paradigmatic understanding of ‘community’ predisposed policy‐makers to emphasise spatial presence over other indicators of inclusion, with derived service outcome measures acting to further entrench the paramountcy of location. As part of their service contracts, for example, New Zealand vocational service providers are only obliged to forward to the Ministry of Social Development the ‘total hours service users are actively participating in the wider community’, with the wider community defined as any activity which occurs ‘outside of the provider premises’.

Although recent recalibrations of public policy have increased their presence in community spaces (Emerson and Hatton 1996; Young et al. 1998), three decades later people with intellectual disabilities remain absent from the intimate social and interpersonal relationships characteristic of community membership and belonging for other community members (Emerson and McVilly 2004; Hall 2004; O’Brien 2003; Todd, S. 2000; Walker 1999). Various disability writers have described people with disabilities as living ‘in but not of’ their local community (Bray and Gates 2003; O’Brien 2003) affirming Todd, G.E., Evans, and Bayer’s (1990) earlier invocation of Georg Simmel’s spatially proximal yet socially distant ‘stranger’ to describe the social position of people with disabilities.

This paper discusses findings from the Community Participation Project, in which people with disabilities reflected upon what community participation meant to them. A summary of the way adult vocational service users described their own spatial and social geographies prefaces a discussion about how participants’ deconstruction of the meaning of community may help us navigate the journey Marie describes as moving from the outside to the inside of her small rural town.

The Community Participation Project

In 2003 a national New Zealand disability service provider, CCS, commissioned the Donald Beasley Institute to conduct a participatory action research project to explore the community participation of people with disabilities. The project’s overarching aims were to develop shared understandings of community participation and to describe the implications that a more sophisticated understanding may have for those who use, provide and fund disability services. Three different stakeholder groups collaborated during the research process: adult vocational service users; support service staff; a team of six disability researchers.

All adult vocational service users in five CCS administrative regions throughout New Zealand were invited to participate in the research in any or all of three ways: focus groups; semi‐structured individual interviews; self‐authored stories. As shown in Table 1, 17 male and 11 female service users participated. CCS is one of New Zealand’s largest providers of vocational support, incorporating support contexts that range between purchased assistance to achieve specific individualised participatory goals and the management of sheltered workshops. Sampling across five administrative regions ensured that participants brought experiences drawn from within the spectrum of possible vocational support contexts. Research participants had a wide range of sensory, intellectual and physical disabilities. The age of participants ranged from 25 to 56 years.

Table 1. Adult service user participant profile.

	n	Age (years) (mean ± SD)	Funded support (hours) (mean ± SD)	Years supported by CCS (mean ± SD)
Male	17	37.7 ± 6.77	13.1 ± 10.83	17.3 ± 12.9
Female	11	40.8 ± 11.22	8.1 ± 6.17	14.1 ± 11.3

Project data from the focus groups included researcher notes, a digital recording of the dialogue and flip charts used during sessions. Semi‐structured individual interviews were audiotaped, transcribed and returned to the participants for self‐editing. Self‐authored narratives were compiled over a series of days with service users and a research team member working together to create a story that captured the service users’ reflections on the various ways they experienced a sense of community. Authors chose a variety of narrative forms, incorporating photographs, archival records, schematic representations and prose. As shown in Table 2, 19 people took part in four facilitated focus groups, 13 volunteered to undergo individual interviews and 4 informed the research by writing self‐authored narratives.

Table 2. The way adult service users contributed to the project.

	Focus group (n)	Individual interview (n)	Self‐authored narrative (n)
Male	11	7	2
Female	8	6	2
Total	19	13	4

CCS vocational staff in two administrative regions also informed the project by reflecting upon the initial analysis of service user data at two facilitated focus groups.

Data from the interviews, service user and staff focus groups and self‐authored narrative texts were thematically analysed by the research team to identify common and contradictory themes through an iterative process of reflection and discussion. These themes provided the framework for a coding structure for a second thematic analysis, which was organised using the HyperRESEARCH qualitative software package. A draft report that summarized adult service user and staff findings was sent to all participants with plain language chapter summaries and a structured feedback form for comments, which were later incorporated in the final report (Figure 1).

Figure 1 The Community Participation Project research cycle.

Present amongst us? The spatial geography of service users’ lives

The people with disabilities who collaborated in this study generally described lives that oscillated between two contrasting types of community spaces.

Home and the vocational centre were at the epicentre of participants’ lives. Most of their lives unfolded in these settings and almost all activity radiated out from them. Many expressed feeling vulnerable to the social isolation they experienced beyond service settings, reporting spending long hours bored or alone at home. The vocational centre was often a welcome respite from their lack of social connection. As a consequence of accumulated time in place, home and the vocational centre were familiar and predictable places people said they knew ‘inside out’. They also described themselves as being ‘known inside out’ in these settings, deriving comfort in knowing their support needs tended to be anticipated and unremarkable when there.

Within most narratives people described pushing out from segregated contexts to places they understood as being the opposite to time spent in segregated centres. However, regular forms of participation were typically organised and moderated by the support service and a narrow range of activities were pre‐eminent. Boche, swimming, 10‐pin bowling, the gym and crafts featured in all people’s activity patterns, appearing to reflect the horizons of service culture rather than individual aspiration.

Interviewer: What do you like doing?

Trevor: Working on cars. Boche, No, I’m not keen on boche.

Interviewer: Who decides what you are doing in the day?

Trevor: CCS do it for me.

Interviewer: How about fixing cars? You said fixing cars was a hobby.

Trevor: No! I don’t get to fix cars.

Beyond service settings the community tended to be experienced as fleeting and irregular visits to unfamiliar public amenities, trips to the shops and walks which broke up the routine of service provision. Staff usually accompanied service users into the community and generally controlled the timing, destination and resources required to make public places accessible. Service users also reported having limited access to staff support at night and during weekends. Out of cadence with the ordinary social life of the surrounding community and lacking a self‐determined compass, the boundaries of participants’ community tended to be defined by professional social practices. Given the way community participation was organised, most people perceived a presence within their community to be an element of service delivery. Many, like Kelly, spoke of ‘doing community participation’.

Kelly: Well, basically you go out, or if you don’t do what you’re told, you get told off, but no, they basically want you out in the community.

Strangers amongst us? The social geography of service users’ lives

Common to the narratives of most participants was a sense of being socially dislocated beyond service settings. Most participants considered they had few friends and said their sense of marginalisation from the world of interpersonal intimacy greatly compromised life quality.

Wendy: Well, I like to get out and meet people, get to know people, and people can get to know me. I have said to the Polytech students, if there is anything you want, give me a ring. I have even given them my number, but there is nothing out there. I wish I could get out more, meet more people, get other people interested in me.

In speaking about the absence of social connection in her life Wendy’s plaintive evocation of trying to get ‘people interested in me’ summed a more generalised sensitivity to the limited number of friends people believed they had, in spite of their determination to forge social connections. Family and staff were most often identified as people’s most important social relationships. Relationships within friendship circles also tended to be bound to one particular setting. To Trevor the vocational centre was a place to share a joke, to add value to others’ lives, but, most importantly, to flirt with ‘the girls’. His friendship with the women at the vocational centre, however, found no expression beyond that setting.

Interviewer: Who would be your friends?

Trevor: The girls.

Interviewer: Do you ever meet them anywhere besides CCS.

Trevor: No! No.

Interviewer: Why is that?

Trevor: They don’t come to my house. No one comes to my house.

Like most participants, having a relationship required an act of migration by Trevor, away from the people and places he knew best, to public or shared community spaces. No one, Trevor said, made an equivalent journey to the places he was most intimate with. People generally described feeling that their impairment dislocated them from more general levels of interpersonal intimacy and of being further restricted by smaller interpersonal networks that offered more limited exposure to new people and places.

The spoken and unspoken narratives of community participation

In disability‐related social policy ‘access’ and ‘participation’ have become synonyms for inclusion (Wilson 2006), with people with disabilities being located somewhere along the exclusion–inclusion continuum within ‘mainstream’ cultural spaces according to their level of visibility.

Critiques of the policy understanding of inclusion, however, argue that it is the sense of community connectedness through relationship that represents the heartland of life quality (Cummins and Lau 2004), with ‘the colonisation of people’s informal lives’ (Furedi 2004) necessary to effect a change from people with disabilities being ‘in’ the community to their becoming ‘of’ their communities.

Despite placing the social model of disability at the cornerstone of The New Zealand Disability Strategy (Minister for Disability Issues 2001), limited progress appears to have been made in advancing the social inclusiveness of New Zealand communities since the policy decision to close all New Zealand institutions in 1985 (Bray and Gates 2003; O’Brien 2003; O’Brien, Thesing, and Capie 1999; National Advisory Committee on Health and Disability 2003). Attempting to tackle exclusion by removing the structural impediments to economic and spatial integration without confronting the wider social construction of impairment (Johnson and Traustadotirr 2005) or the impact of social marginalisation in spatially inclusive settings (Hall 2004) may account for this lack of movement. Silence about how an embedded sense of difference affects the experience of being in place represents a potentially oppressive denial of the experiential reality of disabled lives and a paradoxical blind spot within social policy and disability discourses.

Clement (2006) believed a culture of silence exists to insulate human services from values within wider society perceived as disagreeable to their overarching paradigm. He cited Saeterstal, who argued that forms of intellectual separatism that bury the negative aspects of impairment beneath a plethora of affective policy aspirations are intellectually dishonest. Perhaps to escape the shadow of the total institution, service providers rhetorically cite values like ‘community inclusiveness’, ‘full participation’ and ‘participatory citizenship’, which bear little relationship to the social segregation of people with disabilities or the experiences of families and others who support them (Clement 2006). The less palatable reality for many people with disabilities is that they often take significant psychological and sometimes physical risk being in many mainstream contexts because – as Reid and Bray (1998) observed, their spatial and economic inclusion also includes the ‘normality’ of discrimination, abuse, intolerance and more subtle forms of personal exclusion (Clement 2006; Hall 2004; Reid and Bray 1998).

The second, unspoken reality is that framing community participation and inclusion as occurring only within the communities where people with disabilities tend to be absent blinds us to the value of the multiple communities to which they have always belonged (Wilson 2006). Limiting the ‘appropriate’ contexts for inclusion to spaces of the social and economic majority perpetuates the assimilative logic of antecedent social reform and places legitimate community beyond the experiences that shape the values and social practices of people with disabilities. Not only does this devalue the community of peers, family and other support relationships in which a person is embedded, it excludes the ‘alternative imaginings’ of people with disabilities from the discourse of inclusion (Hall 2004).

Making public the experiential realities of spatial inclusion in ways that also accommodate the alternative imaginings of people with disabilities requires the phenomenological geography of people and place to be overlayed upon the more accessible topographies of space and time. The following sections summarise how participants described experiencing their life spaces, including outlining five qualitative antecedents to a sense of membership and belonging identified by service users.

How service users experienced the places and people in their lives

Participants were acutely aware of the values, policies and assumptions that underscored service interpretations of ‘community’ versus ‘segregated’ settings and readily reflected an understanding that public spaces were the ‘correct’ location for community participation and that involvement with other people with disabilities implied a less valid form of community connection. In their vernacular the community was ‘anywhere not at home or the centre’ or ‘out there!’ in spaces that offered liberation from service settings. The ‘publicness’ of more assimilative spaces appeared to be important. For many the community only existed in spaces occupied by both disabled and non‐disabled people.

Richard: The community is about getting out there and getting accepted for who we are.

John: I feel lucky because when I go out, I am accepted. People know who I am and my chair is not a big deal. I love it when people wave and toot at me.

Sometimes there was a stronger political motivation to being ‘out there’. Many saw their public presence in community spaces as an affirmation of their right to be there. Helen described repeatedly walking an alleyway where a group of young boys would congregate after school as a way of confronting ‘funny looks’, which she interpreted as a challenge to her right to be in the community.

Feeling ‘out there’ was contrasted with an antithetical feeling of being ‘shut away’. Being in the community was initially perceived to be diametrically different to being ‘stuck’ or ‘hemmed into’ the cardinal spaces of home and the vocational centre. When Marie reflected on the relationships she had in service settings the language of liberation changed to that of capture.

Marie: It is a community, but it’s a closed community. We are all closed in to one big room.

By locating community both beyond of the ambit of their ordinary lives and beyond interpersonal intimacy, adult service users’ initial reading of ‘community’ is at odds with the broader, societal understanding of the construct. It also failed to acknowledge a quieter valuing of their disabled peers and the people and places they shared. As discussion progressed stories of the importance of being in segregated spaces or alongside other people with disabilities gradually threaded their way into narratives. The commitment of others in the vocational centre to finding ways for people to express themselves was highly valued by participants. Sometimes this required levels of perseverance that were absent in other contexts. Being in a place where bodily difference and support needs were unremarkable and anticipated added to people’s sense of personal safety. Manu was enjoying training to be a social worker, but had made a deliberate decision to take computing classes with his disabled peers.

Manu: We are all more comfortable because we all have disabilities and that. If I go to other courses, everyone is able bodied and it’s a bit of a barrier for me after all. … I get used to it because I know things are going to be different for abled and disabled people and I’m going to get a lot of stares because they wouldn’t know what’s wrong with me.

Interviewer: So are places like this good?

Manu: Yes. I can be comfortable, relax and just get on with the learning.

Like Manu, many service users spoke of the importance of having places that offered a place to escape public gaze and respite from feeling different. People also told us that relationships at home and in the vocational centre were characterized by levels of intimacy they had struggled to replicate elsewhere. People said they felt most able to disclose their private selves and express their hopes and fears in these settings. For some it was also one of the few contexts where they felt able to add value to the lives of other people, which could be as simple as acknowledging the importance of relationship with a cup of coffee.

Interviewer: What are the good things about being [at the centre]?

Trevor They know me

Interviewer: What other things are good about going there?

Trevor: We go to have a cup of coffee in the morning. I make everyone a cup.

Michael enjoyed the sense of common purpose, mentoring and encouragement he experienced around people with disabilities. Kelly spoke of the self‐effacing humour that seemed especially definitive of her friendships with other people with disabilities and Stuart attributed the support and insight that came from being alongside other people with disabilities as important to his personal development.

Stuart: Being with other disabled people has been important. I have said to myself, I recognise the disability kind of in myself and I said, grow up and move on. It’s just part of the personal struggle that I guess we all have.

Such recognition that places where they could be in the company of other people with disabilities contributed to life quality contrasted with participants’ earlier conviction that mainstream settings were the only legitimate site for community. Indeed, the emphasis placed on contexts beyond the disabled community made it difficult to recognise or articulate a sense of belonging as an ‘insider’ within a culture.

Interviewer: So what places do you feel a sense of belonging? Where do you feel it is right to be?

Kelly: [Vocational centre] CCS.

Interviewer: What gives you this sense? How do you know you belong?

Kelly: Don’t ask me! I just know I do.

Less difficult to articulate were moments of not belonging. As described previously, many participants said they felt dislocated from interpersonal relationship and attributed the absence of friendship and intimacy to public resistance to engaging people with disabilities Experiences of social othering in mainstream contexts punctuated narratives. Everyone had stories of being teased and of experiencing particular community spaces as unwelcoming of, even hostile to, bodily difference. The psycho‐emotional effects of such moments often influenced patterns of community use. Marie described spending her adult life piecing together self‐esteem lost at school and of avoiding places she thought might threaten a fragile sense of well‐being. The anonymity of large department stores made them accessible, but contexts that required greater self‐disclosure or more intimate knowledge of the social ordering of spaces were places she avoided.

Marie: At school, they used to make fun of me. Those things just stuck with me because they hurt. It stopped all my confidence.

Interviewer: The Warehouse is okay but the coffee shop isn’t?

Marie: I feel uncomfortable, because I am doing it on my own and I am scared to get out there and give it a go. I am scared they will judge me. That’s it, they will judge me. … It goes back to when I was younger and I felt people were always thinking what kind of person I was.

Participants’ patterns of community use imply an active process of community construction and maintenance. Everyone spoke of the pull of places where they experienced a sense of membership and belonging and of excluding themselves from other settings.

Emulating self‐authored geographies of belonging

When participants spoke about where they experienced a sense of belonging the acculturative status of settings became less important. What mattered most to people was not where but how they participated. Five key attributes of place emerged as important qualitative antecedents to a sense of participatory membership and belonging.

Self‐determination

The most highly valued forms of participation were self‐chosen activities that people undertook with a degree of autonomy. Authoring the process made the experience of being in places qualitatively different. During his interview Trevor explained how he might be getting a new job. Other people, he said, had found jobs for him before. What made this different was that he had seen an advertisement in the paper and taken the initiative and organised his own support.

Trevor: I’m getting a cleaning job anyway. A cleaning job! First time. I hope I get it. I applied!

Conversely, the absence of control over the timing or form of participation was experienced as demeaning and disabling. Being able to decide where, when and with whom they were in public settings with was the key determinant of the level of comfort people reported feeling in the company of staff or other people with disabilities.

Social identity

People gravitated towards relationships and places where they felt known. Louise had great difficulty walking and her frail health and limited support hours meant that she seldom went out into the community. When asked to rate her level of participation however, Louise volunteered ‘eight out ten’, on the strength that her continued use of the local shops had, over time, led to her becoming a recognised community figure. A small number of sites were nominated as places people said they felt embedded within the social history of a location. Participants’ families, places of worship and a limited number of recreational settings were contexts where some participants had established positive social identities through continuous presence. Participants’ stories also suggested vigilance in scanning for forms of participation that offered them the prospect of sustained interpersonal contact.

Martin: I help out at the 10‐pin bowling centre and that’s a good way to meet lots of people. And get to know people. And you get recognised. Not for your disability, but for who you are.

Reciprocity and valued contribution

In volunteering to help at the 10‐pin bowling centre Martin employed two strategies to challenge the negative attitudes of people who prioritised impairment as a way of knowing him. His ongoing presence allowed Martin to infuse moments of interaction with assistance, which increased the potential for interpersonal as well as cultural knowing. Participants consistently identified reciprocity as an important way to challenge implied dependence. They also emphasised that finding ways to reciprocate within relationships was both the glue that bound friendships and key to humanising important relationships.

Wendy: Doing value is more important to me.

Interviewer: Doing things for you or for others?

Wendy: Doing things for others makes me feel real.

Interviewer: Do you get many opportunities to do that?

Wendy: No.

Wendy’s reflection that it was difficult for her to add value to others lives was echoed by other service users, who told us that their efforts could be thwarted not only by their more limited access to material and practical resources but also by the reluctance of service providers to acknowledge the importance of reciprocity or the less quantifiable benefits of social connection for non‐disabled people.

Participatory expectations

Limited expectations were universally perceived to be amongst the most disabling barriers to community participation. Finding opportunities to ‘prove’ oneself was a common theme in interviews and accessing the community spaces and relationships people felt marginalised from was advanced as the way people with disabilities could undermine debilitating expectations.

Marie: They had me wrapped in cotton wool and I couldn’t break free. I wanted to prove myself and show them that I can. They made me feel as if I was useless by telling me you can’t do this.

In stark contrast, people with disabilities tended to influence each other’s participatory expectations through processes of mentoring and encouragement. Achieving one’s potential and not giving up were pre‐eminent themes in the advice participants volunteered as useful to other people with disabilities.

Psychological safety

Participants said they experienced a sense of belonging when other members of a community valued what they had to say and expected them to contribute to the well‐being of the community. Many people suggested that their lack of self‐confidence coupled with historical experiences of social othering were significant barriers to community participation, but that sharing spaces with other people they trusted was the most effective way to cross feared thresholds. Stuart had a group of disabled friends he met every Friday night. Sometimes they would go to local events, but most Fridays they seemed to end up at the same pub. The first visits took collective courage, but over the years Stuart and his friends had become part of the bar‐scape and their boisterous humour had been osmotically incorporated into the social history of that community space.

Incorporating geographies of belonging in navigating towards a more inclusive society

Collaborating to build individual geographies of belonging illuminates how public policy and support practices that emphasise location as the most informative indicator of social inclusion fail people with disabilities. In describing the experience of being in settings described as ‘out there!’ participants reported being escorted to community spaces as fleeting and irregular visitors. Being in the community in this way precluded the sustained presence they said helped others see beyond impairment and for them to become assimilated with the social history of mainstream community settings. Community participation supported from service settings tended to be steered towards public spaces rather than the private social contexts where people were more likely to experience a sense of psychological safety and interpersonal intimacy antecedent to a sense of belonging. Figure 2 summarises how the attributes of community participation that radiated from service settings were diametrically opposed to those of places participants said they felt they belonged.

Figure 2 Service and personal understandings of meaningful community participation.

Altering social practices within service settings to approximate the ways people with disabilities daily seek out and nurture common community is an obvious way to advance the policy aspiration to move from a disabling to an inclusive society. Seeing community as experiential and, therefore, augmenting utilitarian quantitative indicators of inclusion with qualitative understandings of relationship and people’s sense of ‘being in or out of place’ will be central to the transformation. Constructing an experiential geography of belonging using the five attributes of place participants chose as their metric reveals how far we have to go, for against their own indicators it was the segregated vocational centre that stood out as a beacon of relationship and knowing.

A partial explanation for this finding can be found in the way human support services tend to pursue the goal of community participation. Chaperoning people with disabilities to an array of civic amenities or a programmed exodus to a café in the mall (Figure 2) will always fall short of delivering the social proximity that participants clearly sought and that critics of public policy assert lie at the heartland of life quality (Cummins and Lau 2004; Furedi 2004). Current practices still left people with disabilities feeling like strangers in their community (Todd, G.E., Evans, and Bayer 1990) by failing to empower service users to locate themselves within communities beyond the centre where they are able to experience the attributes of place identified as seeding a sense of community belonging.

That said, we ought not to equivocate about the place of imposed segregation within the discourse of inclusion. The participants in the Community Participation Project could not have been clearer about the danger of becoming ghettoised within disability settings. Their historical experiences of feeling unable to escape disabling identities in professionally authored contexts and their frustration at being marginalised from mainstream economic and political spaces underscored a determination to make visible the unequal access people with disabilities have to the ordinary life of their community. Participants also told us that being present in community spaces was necessary if they were to challenge the social othering they often experienced in mainstream spaces.

However, after deconstructing their own understanding of ‘community’ participants also claimed that what mattered most was not the acculturative status of settings, but how people experienced being there. Echoing the experiences of other people with disabilities, participants reported that being in mainstream settings tended to include the normality of discrimination, intolerance and more subtle forms of personal exclusion (Clement 2006; Hall 2004; Reid and Bray 1998). Participant narratives argue that privileging location over other indicators of inclusion may represent a potentially oppressive denial of the experiential reality of their lives. Broadening our understanding of inclusion in ways that accommodate qualitative indicators and grounding that understanding within an ever shifting dialogue between people with disabilities and society has three important benefits for all partners to the conversation.

Firstly, it leaves space for the alternative imaginings of people with disabilities to become incorporated within the discourse (Hall 2006). If people with disabilities are at liberty to negotiate their way of being in the community new interpretations of bodily difference and new forms of reciprocal association will emerge. Within the disabilities arts movement, for example, drama, cabaret, writing and visual media have been harnessed by people with disabilities to express views and experiences of impairment which run counter to mainstream expectation in a narrative controlled by themselves (Kuppers 2003; Swain, French, and Cameron 2003).

Secondly, we can reasonably anticipate that people with disabilities will find community in other ways that challenge the existing paradigm, perhaps within self‐authored segregated spaces and activities that celebrate the culturally distinctive mores of people with disabilities or harness their collective agency. Writing about self‐advocacy, Goodley (2005) argued that people with intellectual disabilities reclaim a sense of self within the outwardly dis/ordered and anarchic appearance of self‐advocacy meetings by stepping beyond the curriculum of service provision and challenging disabling rules and identities from the safe space of common community. Carnaby (1997, 1998) had argued previously that to achieve meaningful social inclusion a radical readjustment needs to be made in attitudes to the importance of peer relationships, including the transformation of inclusion from an individual to the collective goal of people with disabilities. Collective organization is not without historical precedent (Woodhill and Velche 2006) and in recent decades attempts to renegotiate disability and its meaning within the wider society have been reignited by the disability movement (Gleeson 1999). Lasting social change for marginalised populations has always been self‐authored from the socio‐political periphery (Carnaby 1998; Ryan 1997). Therefore, that recent shifts in public policy should have been wrought by people with disabilities themselves is hardly surprising. As Furedi (2004) provocatively observed, the policies of social inclusion have not thus far been a response to societal demand for greater social connection with people with disabilities.

When participants in this New Zealand study chose to adopt a collective strategy to community participation community spaces became more accessible physically and socially. Participants who named more people with disabilities within their social network reported feeling comfortable and participating in a wider array of community activities. Provided people chose when, where and who they participated with, many reported feeling more able to confront the social ordering of unfamiliar places in the company of other people with disabilities. Becoming assimilated within the bar‐scape and colonising the swimming pool through repeated visits were but two examples of how others who shared similar life and bodily experiences were uniquely able to support each other to change the community about them. The places where people appeared least able to be causal agents within their own lives were the collective spaces of home and the vocational centre. Whereas people commonly expect to exercise greatest agency within the spaces where they spend most of their time (Annison 2000), service users remained in the shadows of decision‐making in these settings. If services were to take the view that people with disabilities were able to define and resolve their own needs this need not be the way people with disabilities experience being together.

Finally, the assumption that the path to social inclusion is unidirectional, involving people with disabilities making a journey to mainstream contexts without any expectation that non‐disabled people need to make the return journey, should be challenged. When Trevor spoke about his life he said ‘No one comes to my house’. In many ways Trevor’s simple evocation summed up a shared reality that community participation for people with disabilities almost invariably involves a migration away from places where they feel known and validated to spaces in which they occupy positions of inferior cultural knowledge, expertise or social capital. Services that have inverted the conventional route to participation by inviting the community to engage people with disabilities within the spaces they feel safe do exist. Examples include a Danish project where people with disabilities were supported to run a backpackers hostel, hosting and orientating visitors to their community (Holm, Holst, and Perlt 1994), disability education and auditing services and community art centres run by people with disabilities. In the same way that disability art broadens understanding by inviting mainstream culture to see itself through other’s eyes, travelling to places authored by people with disabilities allows people without disabilities to see alternative reflections of their shared humanity. When people without disabilities experience being ‘out of place’ at a backpackers or are confronted by disability art or moments of collective agency they are permitted glimpses of the ‘alternative imaginings’ of community, permitting those on the ‘inside’ of society a chance to listen to and learn from communities on the ‘outside’ in our collective endeavour to construct inclusive ways of being together.