Disability & Society

Vol. 24, No. 1, January 2009, 47–62

Community participation and inclusion: people with disabilities

defining their place
Paul Milnera* and Berni Kellyb
a
Donald Beasley Institute Inc., Dunedin, New Zealand; bSchool of Sociology, Social Policy
and Social Work, Queen’s University Belfast, UK
(Received 14 November 2007; final version received 1 April 2008)
Taylor and Francis Ltd
CDSO_A_353709.sgm

Disability
10.1080/09687590802535410
0968-7599
Original
Taylor
102009
24
paul.milner@stonebow.otago.ac.nz
PaulMilner
00000January
&Article
Francis
&(print)/1360-0508
Society
2009 (online)

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 Partic-
ipation 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

*Corresponding author. Email: paul.milner@stonebow.otago.ac.nz

ISSN 0968-7599 print/ISSN 1360-0508 online

© 2009 Taylor & Francis
DOI: 10.1080/09687590802535410
http://www.informaworld.com
48 P. Milner and B. Kelly

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 citizen-
ship (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 identi-
fied 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 partic-
ipatory 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.
 Disability & Society 49

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 administra-
tive 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.
Project data from the focus groups included researcher notes, a digital record-
ing of the dialogue and flip charts used during sessions. Semi-structured individ-
ual 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.
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.
Table 1. Adult service user participant profile.
Age (years) Funded support (hours) Years supported by
n (mean ± SD) (mean ± SD) 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
50 P. Milner and B. Kelly

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

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.

 

 
¥ People with Disabilities

¥ Representative of CCS Policy Team

¥ Disability researchers

"    
#$ 
  
   
¥ Focus Groups (23)

¥ Individual Interview (13)

¥ Authored Story (4)

  
   

    
¥ Focus Groups (17)

Disseminated through CCS website

www.ccs.org.nz/information

 


   
 
   
¥ Structured Feedback

Photo Courtesy of the     !  (22/9/05)

Figure 1. The Community Participation Project research cycle.
 Disability & Society 51

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 conse-
quence of accumulated time in place, home and the vocational centre were familiar
and predictable places people said they knew ‘inside out’. They also described them-
selves 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, swim-
ming, 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 profes-
sional 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
52 P. Milner and B. Kelly

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 accord-
ing 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
 Disability & Society 53

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 inclu-
sion 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 quali-
tative 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 under-
scored service interpretations of ‘community’ versus ‘segregated’ settings and readily
reflected an understanding that public spaces were the ‘correct’ location for commu-
nity 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.
54 P. Milner and B. Kelly

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 libera-
tion 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 acknowl-
edge 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 differ-
ent 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
 Disability & Society 55

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 attrib-
uted 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 anonym-
ity 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 expe-
rienced a sense of membership and belonging and of excluding themselves from other
settings.
56 P. Milner and B. Kelly

Emulating self-authored geographies of belonging

When participants spoke about where they experienced a sense of belonging the accul-
turative 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 expe-
rienced 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 chal-
lenge implied dependence. They also emphasised that finding ways to reciprocate
 Disability & Society 57

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 volun-
teered 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
58 P. Milner and B. Kelly

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 participa-
tion that radiated from service settings were diametrically opposed to those of places
participants said they felt they belonged.
Altering social practices within service settings to approximate the ways people
Figure 2. Service and personal understandings of meaningful community participation.

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 indica-
tors 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 expe-
riential 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 disabil-
ities 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

The experience of community The attributes of participation that

participation from service settings seed a sense of belonging

Fleeting and irregular visits A sustained presence likely to lead to a

valued
 


Public spaces Access to  
 worlds of intimacy
Moderated by staff Equal,    

 , unfettered
by professional understanding
Timing and range of activity controlled by Self authored, 


  


service
Out of cadence with the rhythm of Being Ôinside communitiesÕ at
  
ordinary social activity
   
Money is the medium of social exchange Relationships bound by mutually
understood and 

    
 
Passive role of service consumer Active member 






Person with a disability the foci of Collective community source of reciprocal
supported support

Figure 2. Service and personal understandings of meaningful community participation.

 Disability & Society 59

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 margina-
lised 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’ partici-
pants 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 commu-
nity. 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.
60 P. Milner and B. Kelly

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 great-
est 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, involv-
ing 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 back-
packers 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 understand-
ing 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 imagin-
ings’ 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.

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