Part One: Lifetime Networks’ role as a Change-Agent for Community Development

Last year the ever gracious folks at Lifetime Networks in Victoria were nice enough to let me use their organization as the basis for a paper for a class in Community Development that I was taking.   It was so much fun to look at what they do and put it in to this context.   It’s a long paper so I’ll publish it over three months.   Thanks, Wendy-Sue Anderson and LN for permission to share your great work!    Aaron

Lifetime Networks’ role as a Change-Agent

for Community Development

“There is no more ancient idea of society than a circle of friends.  And there is nothing more predictable than the discovery by a group, who have come together to support one among them, that the one in need is somehow helping them.”  John Ralston Saul

‎“The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed.”
Carl Jung

Why Are Support Networks Important?

Who Are Support Networks Important To?

How Do I get a Support Network?

How Could Agencies Support Networks?

An investigation into the idea of a “support network” that assists someone with a disability in various ways leads one to see that there are many variations on this idea, and varying ideas about why it might matter and what they might do.   What network members won’t, or shouldn’t, do is much more clear.   Stories of what they have done demonstrate the possibilities.   My concern here is to examine how the general principles work from a theoretical and organizational perspective, and how they might be incorporated into the work of more service-based agencies by contextualizing L.N.’s work, and that of similar initiatives, in terms of concepts of Community Development models and the effectiveness of the network model as a vehicle for change.

Lifetime Networks (L.N.) is a small agency in Victoria, B.C., that at its core facilitates supports for about 25 focal individuals with disabilities through actively involved networks of family, friends, volunteers and committed others.  This grassroots community development of small groups occurs through an outside facilitator arriving, by request, with a plan to bring the network together, and an intention from the first meeting to decrease their facilitative role as the group gains strength and leadership (L.N. “Manager”).   Using loosely woven principles of invitation, conversation and narrative the L.N. Manager creates a circle of caring allies who “do not replace the services of professionals . . . [but] provide the friendship and support usually given by friends and family.  . . . [to] help the individual to gain access to services and monitor the effectiveness of their delivery” (L.N. “About”).

Rubin and Rubin, in Community Organizing and Development, after a whirlwind review of C.D. initiatives from local to global and from personal to large groups suggest some commonalities in community development focused organizations: 1) “infrastructure,” referring to a “repository of knowledge and expertise on what to do, an expanding pool of experienced activists,” 2) people who are “trained, dedicated individuals,” 3) supportive organizations that “spearhead direct actions” and 4) stories that “spread the “Narrative of the Possible” – to engage, inspire and teach (26-31, Rubin and Rubin).   In L.N. we see evidence of how variations of these parts work together to create community development in one variant of what John McKnight refers to as,

. . .a new worldwide movement . . . made up of people with a different vision for their local communities. They know that movements are not organizations, institutions or systems. Movements have no CEO, central office, or plan. Instead, they happen when thousands and thousands of people discover together new possibilities for their lives. They have a calling. They are called. And together they call upon themselves. (McKnight, 2009)

While it is somewhat challenging to tease out how the works of organizations like L.N. operate as “community development” they are excellent examples of the process of calling, being called and calling upon oneself – that McKnight cites.  Such groups of people don’t adhere to labels, but are “groups of local people who have the courage to discover their own way—to create a culture made by their own vision . . . a handmade, homemade vision.”   McKnight’s feeling is that this is a time of powerful, potential change rising from revelatory new ways of organizing ourselves in intimate networks, which McKnight calls a “not so wild a dream”:

. . . at the heart of our movement are three universal and abundant powers. The three basics of our calling are:

The giving of gifts—the gifts of the people in our neighborhood are boundless. Our movement calls forth those gifts.

Second, the power of association—In association we join our gifts together and they become amplified, magnified, productive, and celebrated.

Third, hospitality—We welcome strangers because we value their gifts and need to share our own. Our doors are open. There are no strangers here. Just friends we haven’t met.

Ours is the movement of abundance. There is no limit to our gifts, our associations, and our hospitality.

We have a calling. We are the people who know what we need. What we need surrounds us. What we need is each other. And when we act together, we will find Our Way. The citizen’s way. The community way. The democratic way.

We are called to nothing less. And it is not so wild a dream. (McKnight, 2009).

A Brief Rationale: Support Networks for People With Disabilities

The “ancient idea” of a circle of friends, as John Ralston Saul notes, is, in terms of Community Development models, the basic unit of how groups of people initiate and mediate personal and community change.   In the context of people with disabilities, best practice would suggest that supports be normative: what is common to the lives of those of a similar age, or in a similar place, should be present in their lives as well.   One of the most immediately concerning gaps from this perspective is that the social circles of people with disabilities networks are typically “smaller, with proportionately fewer friends, less reciprocity and . . . a large proportion of service providers” and a reliance on family, particularly mothers (Krauss et al. 1992).   This has many implications in terms of physical and mental health, but one of the most telling gaps is that of aspiration.   “Isolation is a dream killer,” writes Barbara Sher, and the lack of vision when one is not surrounded by people who care, greatly reduces one’s power and leverage.   I think of this in terms of holidays – if one was to tell one’s friends each year that yet again we’re off to an annual weekend at a local resort, eventually someone would say “you know, there are other places to go you might check out and you could go for a week or two or three.”   Talking about holidays and sharing stories of new experiences is a read conversation between friends.   Without such conversations, or access to them, one ends up doing the same things year in and year out.   In the lives of people with disabilities who have networks that are briefly documented here we see qualities of continuous personal growth, aspiration and accountability that are similar to those in the lives of people without disabilities.

The intentional creation and facilitation for people with disabilities of what are variously called circles of support, support networks, personal networks, micro-boards, circles of friends or just friends, is a dynamic process – to lead, always preparing to fade, to foster, but not direct, support but not monitor, to dream and call for commitment from others without oneself getting enmeshed.   This important role of connector, and the mission to foster inclusion through networks, is often not recognized or understood, and unheralded:

When the right kind of relationship exists between the community and people with disabilities, it means that they are in roles in which they are valued, respected and supported [through] . . . the facilitation of people with disabilities becoming more fully a part of their communities.

The very simplicity of the efforts often masks their true value, and for this reason it is important to recognize their significance . . . (67, Kendrick, 2009).

If there are many unexamined questions about the different roles of in network facilitation, what is known is that the connector’s role is key.  I suspect it is only the shadow of institutionalization and other kinds of professionalized service-roles that keeps those who support people with disabilities from being called community organizers.  Griet Roets talks about a Foucaultian theory of “nomadology” in relation to people with disabilities – as they travel through life their experiences are in a state of constant re-location depending on how empowering their companions are: a different companion in the same place could mean a very different experience, determined by the ability and intention of the companion to empower (Roets).

Minimally, vulnerable people are protected by a circle of caring people and for many this is the main function of developing a network.   As people with disabilities returned from institutions, with stories of systemic abuses, attention was paid to the safeguards inherent in community presence.  Willard Gaylin has stated, “To be vulnerable is not to be in jeopardy. To be vulnerable and isolated is the matrix of disaster.”   “Care cannot be provided, managed, or purchased from systems,” write John McKnight and Peter Block, but it is the responsibility of an “abundant community” to realize that no problem is specific to any group (no “youth problem,” no disability issue) but everything is “a neighbourhood problem . . . [which] is our greatest challenge and our most hopeful possibility” (4, McKnight and Block).

Of course, this is not only an issue for people with disabilities, but isolation is often perceived as one of the most pressing problems of our time.   Books like Peter Lovenheim’s recent In the Neighbourhood: The Search for Community on an American Street, One Sleepover at a Time document the writer’s realization that he and his neighbours had become not only isolated but inured to isolation: they had forgotten there could be connection between neighbours.   His experiment to see what would happen if he asked neighbours if he could have a sleepover (as a child this was how he got intimate knowledge of his neighbours ) but in the end: “I met a woman living three doors away who was seriously ill with breast cancer and in need of help. . . .  My goal shifted: could we build a supportive community around her – in effect, patch together a real neighbourhood?” (xviii, Lovenheim).   If Lovenheim had lived in Victoria, B.C., he might well have called Lifetime Networks and they could have given him a method.

Similarly, often support networks focus on a single thing that might be changed.   One network member supports the focal person to, for example, hand out the church newsletter every Sunday and after a while such consistent showing up to contribute in a valid social role leads to connections with other congregation members, who then become friends on days other than Sundays.   By getting to know focal people more intimately, over a period of time, network members discover strengths and gifts in the person as well as their own capacity to provide leadership and support.

An important rationale for networks of support is that they lead to healthier members, creating a naturally reciprocal relationship.   Concurrent research in expanding new fields of sociology, community development, informal education, Social Neurology and Sociological Epidemiology have demonstrated how networks can and do come together, and also the implications of the opposite of social-connectedness, loneliness.  This new information which informs us of the necessity of networks means that we can no longer plead that we don’t know how, or that it’s impossible, or that such networks are just “the icing on the cake” of a “good enough” life, but actually now need to be accountable for the health-promoting effects of social-connectedness, and that the brain’s executive capacities are enhanced, thus making good-decision-making more possible and bad decision-making less likely (Cacioppo and Patrick).   In situations ranging from the singular and dramatic (for example, in preparation for disaster, the first recommendation of authorities is to develop a support network (“Emergency”)) to longevity, quality of life and access to normative associational groups, networks are perceived as key elements.   Thus, the active engagement of supportive networks becomes something of a moral imperative.   To not support a vibrant, responsive network of friends and families reduces life-expectancy, quality and quantity of life and capacity, and actually increases disability.   Robert D. Putman states that nowhere “is the importance of social connectedness so well established as in the case of health and well-being” and that decades of research demonstrate that the “more integrated we are with our community, the less likely we are to experience colds, heart attacks, strokes, cancer, depression, and premature death of all sort” (326).   Isolation “represents one of the nation’s most serious public health challenges” (327, Putnam).   Experts have posited that the costs of supporting connectedness would be far less than the costs of the health-care that isolation incurs – a few thousand dollars directed at social-connectedness now could save hundreds of thousands in health costs later (Putnam, McKnight and Block, Cacioppo and Fletcher).