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Community or Community: Presence or Belonging?

March 1, 2015
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If we talk about “community living” but we don’t know what we mean by “community” we end up confusing everyone, including staff who provide supports, those who manage them and the neighbors we hope to befriend. Liat Ben-Moshe, in a paper called “The Contested meaning of Community,” writes that, “If one defines ‘‘community’’ as a binary opposite of ‘institution,’ for example, the course of action would be to advocate for the closure of institutions or institutional reformation to improve their quality. But if one defines ‘community’ as the building of human relationships and not locale of services, then the effects of what became to be known as ‘community living’ should be rethought and problematized given that one can be quite isolated while living ‘in the community’” (Ben-Moshe 243-4).

CommunityConfusion

In a new paper that summaries the research and conversations on this subject, Angela Novak Amado, one of the foremost researchers in our field, and Stancliffe and McCarron, write, “As more individuals with intellectual/developmental disabilities are pbysically included in community life, in schools, neighborboods, jobs, recreation, and congregations, the cballenge of going beyond physical inclusion to true social inclusion becomes more apparent” (Amado, Stancliffe and McCarron 360). A half century after beginning the process to close institutions and bring people back to “community” – when the word may well have just meant the opposite of institution, we need clearer, shared definitions. It’s really surprising once we start looking into the research at the lack of definition of something so many of us put so much energy into.

Measuring successful inclusion strategies and outcomes has been so challenging for our field that in an extensive Literature Review, “Community participation of people with an intellectual disability: a review of empirical findings,” the researchers Verdonschot, de Witte, Reichrath, Buntin and Curfs, found that “on the basis of empirical evidence . . . little is known about community participation” of people with disabilities (Verdonschot, Witte and Reichrath 303).   In Australia, Clement and Bigby write that, while the “goal of ‘inclusion’ has been central to policies that have shaped services over the past 30 years . . . [i]t is an ill defined concept with disagreement about its meaning, [and] the problems it seeks to overcome and how it should be realized” (Clement and Bigby). and van Houten and Jacobs in another article found that “community” is “a contested concept . . . often used without explicitly mentioning who or what one is referring to” (Houten and Jacobs 643).

If our supports aren’t clear about what we mean when we speak of community, we need not respond to the gap between the intention and the reality. In fact, it is hard to respond. The fluidity of what “inclusion” and “community” gets more confused by continual re-languaging and rhetoric. For example, in British Columbia a group of service offerings for global contracts is now called “Community Inclusion,” meaning that whatever happens within some such funded programs even if they are segregated group programs far away from typical community members, is “community inclusion.”

It is worth looking at the histories of the words. Community comes from the late 14 Century Old French comunité, indicating “community, commonness, everybody . . . society, fellowship, friendly intercourse . . . common, public, general, shared by all or many,” and it’s Latin forbearer, communitatem indicated “fellowship, community of relations or feelings,” and this is what “community” means to some of us. However, later on the same word was used to indicate “a body of fellows or fellow-townsmen” in the same way as “Universitas” was a university, a place AND a place where certain people came together to share their lives (Harper, “Community”).

It is in this split between community as persons in relationship, sharing common attributes, and the idea of community as a place that many difficulties and misunderstandings occur.

As increased research into quality of life studies of people with disabilities accrues in different places, we accrue more data, it becomes clear that if we don’t know quite what community inclusion is, we know when it is not occurring. For example, in British Columbia’s “IncludeMe” campaign in which self advocate interviewers, supported by researchers, interview peers about quality of life, the lowest average scores across all quality of life domains for self-reporting people with disabilities in the province was 5.93 out of 10 for social inclusion (Howard Research & Management Consulting Inc. 8). These results are similar to those of other quality of life evaluation projects focused on people with developmental disabilities (Alberta Human Services).

Even this gets a little problematic if when this question is asked it is then defined by examples of segregated activities such as dances, or a program centre, when for others our real question is whether or not you are involved in choirs, co-oops, church congregations and various kinds of inclusive groups to the extent that you want to be.

Looking more deeply at self advocate voices can be instructive in terms of understanding what “community” is. When self advocate leader Peter Park speaks of his experience of institutional life he talks about years gone missing: “I’m fifty-nine . . . take 18 years off that, and that’s my right age . . . . That’s the way I look at it, I’m only forty-one” (Park). In the isolation of institutionalisation he simply stopped existing. What’s interesting, though, is that the language and concepts that people talk about don’t change very much when they talk about segregated programs. Paul Young, another remarkable leader and a person with a disability, talks about segregated activities as creating “the cocoon of impossibility, meaning sheltered, segregated classes, workshops, the traditional services that people with intellectual disabilities receive,” in which people are protected from perceived risk by not being allowed access to normative experiences Young.

Marie Meikle, interviewed by Milner and Kelly, says of her place in her New Zealand community, “I guess I know the outside of Invercargill, but not much of the inside” (Milner and Kelly 47).   When she agrees to narrate her own story to the researchers as a person with a disability living in the community, there is first some awkwardness because they suggest a cup of coffee at the local shop:

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. (Milner and Kelly 47-8)

Invisible, cocooned, anonymous.  These are the words that self advocates describe their experiences of exclusion in not only institutions but community inclusion programs.

CommunityVennDiagram

Milner and Kelley, in their paper, “Community participation and inclusion: people with disabilities defining their place,” interviewed program participants who spoke of “doing community participation”: “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” (Milnera and Kelly 51). In a section titled, “Present amongst us? The spatial geography of service users’ lives,” they state that participants “described lives that oscillated between two contrasting types of community spaces” which were their homes and the vocational centre they attended, and “places they understood as being the opposite to time spent in segregated centres,” even though their participation in these places was “typically organised and moderated by the support service and a narrow range of activities were pre-eminent.” It is here that we see how the element of choice influences people’s perception of whether they are engaged in “community”:

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 . . . and generally controlled the timing, destination and resources required to make public places accessible. . . . 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.

Sometimes, people talk about group programs as if they are small sub-communities which participants have freely chosen to be part of and enjoy, yet these participants didn’t express this to independent researchers and also talked about “feeling vulnerable to the social isolation they experienced beyond service settings, reporting spending long hours bored or alone at home” (Milner and Kelly 51).  However, another interesting aspect of this paper was that a thing participants liked about their centre based day program was that it gave them opportunities to help each other – the importance of reciprocity was clear.  This would mean that in the best examples of community inclusion people have choices about where to go and what to do, and that some of those choices incorporate the opportunity to make contributions.

CommunityMeetingPeople

Is there hope beyond “bored or alone at home”? One of the things we absolutely know is that it is pretty much impossible to facilitate interaction between a group of folks with disabilities and most community members, whereas making it easier for one person with a disability to get to know others is relatively easy. In a local example, when a few people started having lunch at a neighbourhood house and were getting to know the other participants and staff, somehow more people found out about it, and saw it not as a place to share interests and meet people but as a place to have lunch, where it was warm and there were bathrooms. Carloads began to arrive, and the formerly friendly participants and staff went from “nice to meet you” to “why have they moved a day program into our neighbourhood house? We don’t have the resources to support this.”

“Community” as an affiliation of people with similar interests and aspirations doesn’t have a limited sense of “resources.” Michael Kendrick once told us that if you know what someone is interested in, you can always find others with the same interests – even if they seem quite odd to you. Soon after, I was at a local airport, and I noticed a couple sitting at the window having lunch, talking about the arrival of different planes from different airlines and whether they were on time or not. I assumed that, like me, they were waiting for someone. As they finished up their lunches and got ready to go, more people arrived and said, “I guess our shift is starting!” and began to chat with them and I realized they were part of this loosely knit unofficial group of people who track what happens at their small airport. They discussed it with way more enthusiasm than I would have ever have imagined.

Who is harmed by a lack of definition? People with disabilities who end up not having networks of support because they have few or no opportunities to meet others who are outside of their services. Communities that end up not having access to the strengths and gifts that people with disabilities bring to us all. Staff, families and agencies who steadfastly work towards one thing and then are told years later that they were working for the wrong thing, as in Alberta when programs were radically cut because a government official said “Loading people on the bus and taking them to Tim Hortons at 2 p.m. in the afternoon is not community inclusion” (Komarnicki).

An interesting program in England is the “Stay Up Late” initiative. Community members realized that folks with disabilities were not getting out to see bands they liked or be part of their local pub communities because they needed to be home by a certain time for staff scheduling reasons. They began matching up people with disabilities who liked certain music or activities with others who were going to those things anyway (http://stayuplate.org/gig-buddies-project/). In one recent update I read that the organizers had met someone who wanted to go out and see the stars at night and they felt sure they could find others who were already doing that and would welcome new friends.

But, unless we are asking the right questions, in words that mean the same thing for all of us, we won’t look for such opportunities. Defining what we mean by “community” is an easy start to a bigger conversation about what is and has already been successful that we can build on.

CommunityPlaceOrFeeling

Works Cited

Alberta Human Services. “My Life: Personal Outcomes Index: Summary Report, Provincial Aggregate Final Report.” 15 October 2012. Persons with Developmental Disabilities Alberta . Persons with Developmental Disabilities Alberta Human Services. 22 February 2015 <http://humanservices.alberta.ca/documents/PDD/pdd-poi-summary-report.pdf&gt;.

Amado, Angela Novak, et al. “Social Inclusion and Community Participation of Individuals with Intellectual/Developmental Disabilities.” Intellectual and Developmental Disabilities 51.5 (2013): 360-375.

Ben-Moshe, Liat. “The Contested meaning of “Community” in Discourses of Deinstitutionalization and Community Living in the Field of Developmental Disability.” Disability and Community (2011): 241-64.

Clement, Tim and Christine Bigby. “Breaking Out of a Distinct Social Space: Reflections on Supporting Community Participation for People with Severe and Profound Intellectual Disability.” Journal of Applied Research in Intellectual Disabilities 22 (2009): 264-75.

Harper, Douglas. “”Community”.” 2001-14. Online Etymological Dictionary. 18 January 2015 <http://www.etymonline.com/index.php?term=community&gt;.

—. “Exclude.” 2001-14. Online Etymological Dictionary. 19 January 2015 <http://www.etymonline.com/index.php?allowed_in_frame=0&search=exclude&searchmode=none&gt;.

—. “include.” 2001-14. Online Etymological Dictionary. 19 January 2015 <http://www.etymonline.com/index.php?term=include&allowed_in_frame=0&gt;.

—. “Isolated.” 2001-14. Online Etymological Dictionary. 19 January 2015 <http://www.etymonline.com/index.php?term=isolated&allowed_in_frame=0&gt;.

—. “Segregate.” 2001-14. Online Etymological Dictionary. 18 January 2015 <http://www.etymonline.com/index.php?allowed_in_frame=0&search=segregate&searchmode=none&gt;.

Houten, Douwe van and Gaby Jacobs. “The empowerment of marginals: strategic paradoxes.” Disability & Society 20.6 (2005): 641-54.

Howard Research & Management Consulting Inc. My Life: Personal Outcomes Index: Summary Report. Final Report . Community Living British Columbia. Calgary, May 18, 2011 .

Komarnicki, Jamie. “Disabled support program slashed because it wasn’t working, says province.” 28 March 2013. Calgary Herald.

Milnera, Paul and Berni Kelly. “Community participation and inclusion: people with disabilities defining their place.” Disability & Society 24.1 (2009): 47-62.

O’Brien, John. “…to interact with non-disabled persons to the fullest extent possible.” Perspectives On “Most Integrated” Services for People with Developmental Disabilities . Reflection. Responsive Systems Associates. Lithuania, Georgia, n.d.

Random House, Inc. . “inclusion.” n.d. Dictionary.com Unabridged. Random House, Inc. . 19 January 2015 <Dictionary.com http://dictionary.reference.com/browse/inclusion&gt;.

Smith, J. David and Michael L. Wehmeyer. Good Blood, Bad Blood. Science, Nature, and the Myth of the Kallikaks. Kindle. American Association on Intellectual and Developmental Disabilities, 2012.

Verdonschot, M. M. L., et al. “Community participation of people with an intellectual disability: a review of empirical findings.” Journal of Intellectual Disability Research 53.4 (2009): 303-318.

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One Comment leave one →
  1. ewalker@iinet.net.au permalink
    March 1, 2015 2:53 pm

    ​Thank you Aaron!!!!!!!!! Aaah the synchronicity of life appears yet again.

    e.

    Ellen Walker
    PhD Candidate| School of Occupational Therapy and Social Work| Faculty of Health Sciences
    Curtin University
    Mob | 0401 502 551
    (International) +61 401 502 551
    Email | Ellen.Walker@postgrad.curtin.edu.au
    ________________________________

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