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

May 1, 2011

Lifetime Networks Victoria is preparing for their annual gala!

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

Often it is easier to see how those with disabilities might benefit from a support network than how those in the network, and the communities they are part of, might benefit.  Jim Diers, former head of the Seattle Neighbourhoods Department, discusses a “service exchange” program called Fremont Time that allowed neighbours to exchange jobs preferred by each individual (thus allowing them to demonstrate their gifts) for exchange credits as a means of connecting neighbours, building social capital and encouraging reciprocity.  One leader of the initiative, Carolyn Carlson, “believed that not only the person but the entire neighbourhood gets shortchanged when someone with developmental disabilities is not involved in his or her community . . . [bringing] wonderful abilities, skills, knowledge, creativity, and personalities that could enrich any neighbourhood that welcomed them” (36, Diers).  With everyone doing what they were best at, people with disabilities earned credits for their contributions, which they were able to exchange with neighbours.  One woman exchanged her credits for scribing support from a local journalist who helped write her story (36 – 39, Diers) and they became great friends.   This program and others like it in Seattle led to connecting people with and without disabilities as actively engaged participants in community development.   A person with autism and an eidetic memory for buses, shelters and schedules went on to sit on the Seattle transit board, to the benefit of the executive board, the city budget and transit users.  In “every instance,” Diers writes, “the key was to find a ‘connector,’ someone who would serve as a link between the individual and the organization and take responsibility for making the relationship work” (39, Diers).  A related factor, of course, would be the leadership of people like Carolyn Carlson who had an initial vision of connectedness and contribution, and then figured out a methodology of implementing.

A network also has uncommon and personalized accountability and creativity.   Using a similar model to that used by L.N., but in another place, “John’s Personal Story” is an example of the transformation of an entire circle of family and friends through intentional conversations.  When John was only nine, his far-sighted “parents began talking with friends and family members . . . asking: ‘Who will need to know him, and what kind of experience will they need to have with each other so that someone in our circle will offer him employment when he leaves school? What do we need to be doing together over the next ten years for this to happen?’”   This led to the creation of an empowering circle of friends:

. . . John’s parents knew that it was important to do a good job with their personal community – not with “the community” at large, but with the people who knew John, who loved him, and who knew that he would be part of their futures, forever. . . . A small amount of formal support . . . could support a much larger commitment from their friends [as an intentional support network], but John’s future wouldn’t be dependent on the operation of the system.

John’s experience is briefly contrasted to that of other families who focused on working with professionals, leading to “54 families [who] marched on our Legislature, stridently complaining that the ‘vocational rehabilitation system’ had not made preparations for their children’s graduation from high school. Some of their sons and daughters had been sitting at home for over a year.”    The writer continues:

. . . [John’s mother] helped us understand that the march on the Legislature had three meanings:  First, it was true that the ‘system’ had not done a very good job of planning for these young men and women as they approached high school graduation – somehow they had not been ‘planned for’ or ‘budgeted for’ on their way into the adult system. · Second, it meant that for eight, ten, or even twenty years, 54 families had been systematically convinced that their children’s futures would somehow emerge from the service system. They were told that the most important work that they could do as families was to pay attention to the interface with that system – educating, challenging, advocating, and hoping against hope that the system would do its job when their sons and daughters emerged from school. · Third, and perhaps most importantly, it meant that 54 sets of friends, extended family members, members of faith communities, colleagues at work, schoolmates and neighbors – literally hundreds of people – had never been asked to think about what they might do to welcome these young men and women who they already knew, into the world of work. A great opportunity had been missed [“John’s . . .”].

In a singular way, this focus on personal, shared narratives of not “the community” but the experience of a network of family “friends, extended family members, members of faith communities, colleagues at work, schoolmates and neighbors” who have a relationship with John, is essentially politicizing.  While safeguarding and enhancing his potential, the network is growing awareness of issues on a larger scale.   Concurrently, the perceptions of the widening group of John’s friends, defining him by his assets, instead of his deficits, create the conditions for a ripple effect.

Networks: A Ripple Effect

A central question might be how does “growing” a circle of friends around someone with a disability lead to more wide-spread community development?   While establishing the network of a vulnerable person can be defined as community organizing in terms of defining and facilitating relationships, introducing new allies, and giving the network substance through intentional conversations about one focal individual, the leadership skills of the focal person, the network members and the network facilitators is also continuously growing and adding to the community’s strengths.   Seth Godin describes the idea of a “linchpin,” a “genius” who is “someone with exceptional abilities and the insight to find the not so obvious solution to a problem,” who “looks at something that others are stuck on and gets the world unstuck,” who sees “a way to make something work that wasn’t working before,” and, specifically, can make “a personal connection with someone who was out of reach to everyone else” (loc 52):

Our society is struggling because during times of change, the very last people you need on your team are well-paid bureaucrats, note takers, literalists, manual readers, TGIF laborers, map followers, and fearful employees.   The compliant masses don’t help so much when you don’t know what to do next.

What we want, what we need, what we must have are indispensible human beings.   We need original thinkers, provocateurs, and people who care.   We need marketers who can lead, salespeople able to risk making a human connection, passionate change makers willing to be shunned if it is necessary for them to make a point.    Every organization needs a linchpin, the one person who can bring it together and make a difference. . . . . [loc 147, Godin]

This connector role of L.N. and like-minded organizations, both as network managers and as agency leaders, seem like excellent examples in Community Development of a “linchpin” community leader helping one vulnerable person at a time join a “tribe,” which will then create opportunities for other joinings, other connections, and the sharing of gifts and art:

. . .  A priceless gift [an emotional experience as a kind art] has been given, one that can never be valued monetarily or paid for or reciprocated.    The benefit to the artist is the knowledge that you changed in some way, not that you will repay him.   And so your only possible response is to make the tribe stronger.

. . . you then have two obligations: to make us closer, and to pass it on, to give a gift to another member of the tribe.   Gifts don’t demand immediate payment, but they have always included social demands within the tribe.    [italics mine, Loc 2,787, Godin]

It is important to remember, in the case of L.N., that there is a built in mechanism for downloading this “linchpin” role to a network member.  As well as leadership, the transformational process of belonging to a network has been seen to increase awareness and community accountability for all members (Newton).   Such focused engagement has also led women and minorities to go on to other kinds of  leadership roles in Community Development (“Circle”).

Part of the ripple effect is the demonstration of a different method of joining forces.  The very action of network development as a method of social change through a focus on smaller conversations is in itself a radical shift, Margaret J. Wheatley writes, using the metaphor of an organism.   The network organism “chooses to be disturbed” (85) in a new way.  Members, having become habituated and somewhat immune to typical organizing forms – a committee, roles, terms of reference, outcomes – are inspired to action by re-focusing on authentic, relational networks and the methods (feelings, conversations, dreams, inspirations) of these more organic processes catch us up:

Life changes its forms of organization using an entirely different process.   The process can’t be described in neat increments or sequential steps.  It occurs in the tangled webs of relationships – the networks – that characterize all living systems.   There are no simple stages or easy-to-draw causal loops.   Changes occur quickly but invisibly, concealed by the density of the network.

. . .

Some part of the system . . . chooses to be disturbed by this.   Chooses is the important word here.   No one ever tells a living system what should disturb it (even though we try all the time).   If it chooses to be disturbed, it takes in the information and circulates it rapidly through its networks.   As the disturbance circulates, others grab it and amplify it.   . . . all the time it is accumulating more meaning.   Finally, the information becomes so important that the system can’t deal with it.   Then and only then will the system begin to change.   It is forced, by the sheer meaningfulness of the information, to let go of present beliefs, structures, patterns, values.   It cannot use its past to make sense of this new information.   It truly must let go . . . [85-86]

It could be, then, that these intimate networks are through the development of  authentic caring relationships intrinsically politicized or ripe for becoming change-agents in that life, in the person’s home, their neighbourhood, and on to larger canvases.   Juanita Brown, of World Café methodology, says intentional conversations in which “small groups spread their insights to larger groups, carrying the seed ideas for new conversations, creative possibilities, and collective action” themselves “are action – the very lifeblood and heartbeat of social systems like organizations, communities, and societies.   As new meanings and the coordinated actions based on them begins to spread through wider networks, the future comes into being” (LOC 585, Brown).   John O’Donohue, wrote, “[t]here is nothing as un-neutral as a home.   Even the most ordinary home is an implicit theatre to subversive inner happenings” (81).   To enter the home and life of someone previously deemed “other” is in itself a political act.   Having accepted not “terms of reference” but hospitality, one is changed and accountable.   If it is difficult to know where the ripples end, it is equally hard to know when exactly they begin.

The Need for a Specific Network Focus

Canadian researchers and parents John Lord and Peggy Hutchinson, facilitators and community developers, in their recent book, Friends and Inclusion: Five Approaches to Building Relationships, co-written with their daughter Karen Lord, and using her life as an example of these approaches, break down successful practices in network development and suggest that “participation in family, school, neighbourhoods, and other places where people gather . . . [leads to] genuine caring relationships where people share common interests, love and respect each other, and want to spend time together.”  They continue, “Contrary to the idea that these kind of friendships can only happen naturally, our experience is that discovering and building real friendships requires intentional or deliberate action” [italics mine] which leads to “a textured life rich with friends is like a beautifully woven cloth” through the dedicated facilitation of a group by someone taking or being supported to take a leadership role (i-ii, Hutchinson, Lord and Lord).

If the fostering, management and facilitation of such individual networks is delicate and complex “weaving,” the workings of an agency or association that focuses on the supports for such network development is an almost unfathomable mixture of the practical and ephemeral, leadership and management, advocacy and service, marching band and jazz!   Such “jazz” is often antithetical to systems requiring reproducible, predictable outcomes and agency supports for people with disabilities often do not think of themselves as participating in Community Development, perhaps just as a hospital might not think of itself as such (this might be a last artifact of institutionalization) or it could be that the monitoring of the possible issues outside the agency’s control is too daunting.  In fact, a recent evaluation of Australia’s “The Circles Initiative” project which examines association between service-provision and a support networks project recommends clearly delineated and communicated differences in roles and intentions (22, Sherwin).

In more traditional service-orientated organizations the specter of professionalized services often means ending up in the same place simply from unquestioned assumptions about roles and how things work, and a culturally-ingrained desire to want to believe in the potential of systems of support.   In their new book on the power of families and neighbours, John McKnight and Peter Block write:

…  The doctor, the school, the police and the therapist thrive on our deficiencies and needs.   Deficiencies are the love song of the system romantic.   And any of us who believes that deficiencies are the point, and that systems can cure them, is the ultimate romantic.  It is for us that the love song is written.

Every time we surrender to that love song, the effect in the morning is that we have been colonized.   We are colonized by the belief that we are a diagnostic category; that we are a need, not a capacity; and that only a system, a product, a professional service can satisfy that need.   (loc. 960, McKnight and Block).

We are, in short, attracted to, perhaps even smitten with, the idea that systems can succeed for us all, despite evidence to the contrary, or the lack of any kind of logical measurement and accountability [Pallotta], just like those 54 families suddenly realizing their graduated children had, unlike John, no plan for their future.  “As soon as we approach people from the perspective of their disability needs,” says Michael Kendrick, “we are caught in an endless cycle of addressing those needs, when we might have been looking at gifts and capacity.”   What seems cruel, in an examination of such disparate methods, is that a family might give up so many years, and so many potential connections, to end up so disappointed and then still be led to believe that things might change through a system that has now “turned another page.”   It is no wonder that social services are typified by this change mentality.

The late Marsha Forrest and Jack Pierpoint passionately described their vision of how such networks of support can lead to larger change, saying that the “key question as we initiate a new millennium is ‘How do we live with one another?’” and suggesting inclusion is part of the answer, “inviting parents, students, and community members to be part of a new culture, a new reality. . . . inviting those who have been left out (in any way) to come in, and asking them to help design new systems that encourage every person to participate to the fullness of their capacity as partners and as members.”   They continue:

Why does this humble proposal evoke such a strong reaction? Why is welcoming people labelled “disabled” seen as an activity of the “radical fringe?” Hospitality is not radical. Caring for our families and friends is not radical. In fact, hospitality and caring are foundations of our culture. So why the intense reaction about inclusion?

We believe that the Inclusion issue cuts directly to the core of our values and beliefs. Inclusion seems so simple, so full of common sense and yet it is complex. Inclusion sets off fire works in the souls of those involved. Inclusion challenges our beliefs about humanity and cuts deep into the recesses of our hearts.

Inclusion is not about placing a child with a disability in a classroom or school. That is only a tiny piece of the puzzle. Rather, inclusion is about how we deal with diversity, how we deal with difference, how we deal (or avoid dealing) with our morality.

How else can we explain the emotions unleashed by the presence of a tiny child in a wheelchair or the presence of a teenager with down syndrome in a local school in Canada, the United States, Britain, or Australia? Why do so many apparently “normal” adults lose their composure with the mere mention of including an excluded child. We conclude that the arrival of this person signals major change, and for many, change is something to fear, something fraught with danger.

However, in danger there is also opportunity for growth. Thus, schools and communities, teachers and citizens, who face their own fears and morality by welcoming all children instantly create the climate for a new kind of growth. Inclusion becomes an opportunity and a catalyst to build a better, more humane and democratic system.  [Pierpoint and Forrest]

If the rhetoric is exciting and full of potential, at the ground level many families who might want to move from a focus on professionalized services and what McKnight and Block refer to as the “romance” of the belief in systems, need a clear alternative, which is what Lifetime Networks provides.

Lifetime Networks as a Case Study

L.N.’s was incorporated in 1998 and its central mission, its “heartwork,” was and is the creation of networks of support.   A large part of the initiative to form the association was the concerns of families for the sustainability of life-long supports and services for their children.   “Who will be there for my child?” is a fair question from families who have participated in endless, often unsatisfying and undesired interactions in a system known for it’s long history of aggressive, un-communicated and absurd changes, interwoven with confusing bursts of passionate concern for consumer input (Stainton).  While L.N. has expanded on its original mandate with related services, the fostering and enhancement of circles of support is its central mandate.

The infrastructure of the agency is typical of a non-profit, with a volunteer board, the majority of which, according to its by-laws, are people with a family or network member who has a disability.  Monthly board meetings are open to the public and an open invitation is posted on the L.N. website, an initial keynote of hospitality and transparency that one comes to see as typical of the agency.

L.N. in 2009 employed three leadership-focused staff, about a dozen “network managers” focused on the support of 24 active networks, a number of arts and education teachers for about 100 students in ongoing art, theatre, life-skills and music programs, and other contracted staff who support “independent living” for individuals needing minimal support to live in their own homes.  None of the employees work full-time, including the Executive Director, the leaders averaging about 25 paid hours per week (Andrew).

Diverse funding sources include Veterans’ Affairs, B.C.’s provincial government automobile insurance program (I.C.B.C.), lawyer-trustees for individuals, individuals and their families (Andrew).    Only one of L.N.’s programs is funded through a small government contract.  One of the criticisms of “fee for service” programs is that they create a hierarchy of services, and L.N. negotiates this by ensuring activities are affordable.  Fund-raising allows for the support of two networks and other subsidies for people who have no families or friends or government funding (Andrew).

Because of this conscious distancing from government funds, L.N. is able to freely decide who to support and how, thus taking at least educative accountability as a model of support that does not let anyone fall between the cracks.   For anyone used to governmental strictures, this idea might take a moment to consider: there are no criteria except self-assessment of one’s needs and the idea that those needs might be met through L.N.s methods.  The focus on non-government funding also allows advocacy with governmental funding supports for individuals, as there is no real financial investment in pleasing funders, a significant difference to service agencies which began as associations of parent-advocates but are now reliant on government contracts to provide “services.”

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