We heard and reflected on stories of the history, purposes, structures and benefits of five local initiatives that move human talent and modest amounts of service system money across the boundaries of the human service system and into civic space (the initiatives are identified on the diagram above). Each initiative benefits people with developmental disabilities and their families through their direct participation. Each is energized by active involvement with other local resources outside the DD service system. Each receives some financial support from the Dane County DD system. All except TimeBank originate from purposeful efforts to organize people with disabilities and their families. The story of Movin’ Out was told in two parts: its origin from a small group of parents who no longer function as a group and its current form, which demonstrates how modest initial investments in civic engagement can grow and multiply over the 21 years since the founding group decided to partner with Dane County and available housing resources from outside the DD system and created an organization to increase the stock of affordable and accessible housing available to people with disabilities in Dane County. More information on the four currently active initiatives is available at the web addresses on the diagram above.
The Contribution of Civic Engagement
In services to young people and adults, Dane County’s DD system prioritizes supporting individual integrated employment. This deserves the priority it receives because employment offers many potential benefits and engages people as productive workers in the cash economy. However, paid work seldom fills all of a person’s time. Neither does it provide people with all the opportunities possible for belonging, enjoyment of shared activities and the development and contribution of individual capacities and gifts. This is especially true in Dane County, where citizen associations and cooperative structures that act from positive values are abundant and occupy many citizens outside their job roles and private lives.
The stories we heard exemplified different kinds of civic engagement. TimeBank provides a structure for exchange outside the cash economy that offers people with developmental disabilities the opportunity to participate as they choose in a large and diverse network of people and organizations to give from their capacities as well as get some of what they want. Gardening for Good offers people the chance to participate directly in a neighborhood group organized to grow and share healthy food. LovDane joins families and people with developmental disabilities and creates spaces in which new ways to join members interests and assets can grow. From near its beginnings, Movin’ Out has mobilized housing resources by forming a network of alliances and partnerships with resources that people with disabilities and their families would otherwise have difficulty accessing.
The different kinds of Civic Engagement these initiatives demonstrate are important ways to embody two principles for action that are important to living the New Narrative well:
- Invest the human energy and talents of people with disabilities, their families and allies and service staff and the financial resources of the DD service system in creating ways to multiply those energies and resources. Multiplication happens when networks of participation engage new people, organizations and resources in ventures from an exchange of TimeBank hours to a real estate development partnership in Stoughton.
- Intentionally invest in increasing the variety of opportunities for valued experiences: membership and belonging, engagement in valued roles that promote respect, use of common community places and resources, meaningful choice, and making a positive difference to others. These experiences offer people meaningful activity, expand the horizon of possibilities, and increase confidence collaboration pays and that their actions matter.
These are modest initiatives. They are not for every person or family. They don’t come near fully replacing paid services for many people with complex needs for assistance. They don’t come with guarantees. Some of the particular opportunities arising from these five initiatives have sustained themselves, others have been stepping-stones. All depend on continual investment of human energy in both the actions that bring people together and the structures for organizing those relationships.
As we finished the day, Deamon Harges, a visiting practitioner of Asset-Based Community Development from Indianapolis, reminded us that, though they may be small, flawed, and potentially fragile, these initiatives matter because each makes a just claim on opportunity in common space for people who are typically excluded from that common space. Because it confronts the forces of exclusion and devaluation, this claim is a healing exercise of power that is energized by love. Deamon quoted Martin Luther King:
Power without love is reckless and abusive, and love without power is sentimental and anemic. Power at its best is love implementing the demands of justice, and justice at its best is power correcting everything that stands against love.
What we learn from the stories
- These initiatives are created by their participants, not delivered to them as a consumable service. Gardeners eat what they collectively grow. What people get from the TimeBank is usually a function of what they give. People organized by LovDane support one another to invent better ways to live their vision. People and families who find their way home with assistance from Movin’ Out have to make a home and a neighborhood as well as pay the mortgage or rent.
- Creation is energized by shared care based in individual passions. The stories we heard reveal powerful, almost archetypal themes:
- Growing & creating together by incorporating diverse gifts and capacities
- Sharing, mutual support and cooperative effort
- Neighborliness and good homes
- Celebration of the local and homegrown/homemade
- Facilitating exchanges outside the cash economy
- Relationships based on shared concern for a common activity or issue have a great potential to be equal and allow the expression of “power with”. Typical service relationships are more susceptible to inequality and “power over”.
- Efforts at civic engagement meet competing social values that promote injustice and exclusion: devaluation of disability; ambivalence about dependency and asking for help; neglecting the local and underestimating the power of grassroots efforts and what those efforts require to thrive; overlooking the personal and relational in favor of impersonal transactions; over-focus on the cash economy which leads the state DD system to “waiverize” and “manage care” and thus to entanglements with compliance to external system rules. As the stories show, it is possible despite these competing values to organize very local action that struggles to embody more positive human values.
- These initiatives require sustained effort to organize and maintain the relationships that create their benefits. Organizers support LovDane and TimeBank; Movin’ Out invests substantial time in building new partnerships. Organizing is work that deserves compensation. Modest investment of public DD funds can be worthwhile, especially when this investment is multiplied in partnership with other resources for organizing or leads to new assets.
- Dane County is fortunate in having a social climate that favors civic engagement. There are many potential partnerships available. Partnership is created on the basis of common or complementary purposes, not on a demand for privilege based on disability. Partnership is found outside the boundaries of the DD system by people who are active in conversation with people who often begin the relationship with no appreciation of the the contribution that people with developmental disabilities can make.
- People and families benefit from the opportunity to clarify what really matters to a good life, to consider the contributions and limits of publicly funded human services, and discover opportunities for participation in civic initiatives. For many families, learning through conversation in a group with other families is an important medium for clarifying direction. This conversation requires continual renewal as new generation of people with developmental disabilities grow up. The parents who met as Movin’ Out came to the understanding summarized in the diagram below. As they thought about their own sons’ and daughters’ future, beginning from what they didn’t want, they arrived at a positive vision. With their family vision in mind, they identified what gave them the best chance at living that vision. They concluded that sustained involvement and investment by family members was critical to a good life; that one valuable family investment was in increasing the number of people who committed themselves to support a good life for the person and family; that lack of suitable housing for people with disabilities was a community issue whose resolution would make it more possible for more people to live the vision of having their own home; and that the human service system had a primary role in funding and assuring the supply of capable, committed workers to provide necessary assistance. It’s clear that adequate public funding for services is necessary and continuing political work is necessary to sustain that funding, but no matter how big the DD budget, work outside its boundaries is critical.
- There are people who currently can’t count on family involvement and investment. There are families who may be incapable of high levels of investment. These people depend on their own resources, their brokers and the staff who assist them. If they are focused, capable and willing to move outside their usual pattern of work, greater civic engagement is possible regardless of family involvement. Gardening for Good demonstrates this.
- The families that came together to create Movin’ Out and LovDane have the same range of demands, difficulties, competing concerns, fears and reasons to be tired and pessimistic as any other group of families might have. Much of the time, for most of them, the effort they put into civic engagement is a source of hope, support and resourcefulness.
- The point is not a one size fits all solution. The point is to multiply opportunities for civic engagement by acting purposefully on things that people care about outside the boundaries of services.
- Civic engagement offers people with developmental disabilities and their families real benefits regardless of the level of public investment in supports. By and large, these benefits are the same as those experienced by any other citizen.
- The work that families and people with developmental disabilities have done through LovDane shows that organizing together can multiply opportunities for people with small service budgets.
- TimeBank has even more potential than we are currently using. It is both a source of exchanges that could offer people, families and organizations new, non-cash resources, a platform for further innovation and partnership, and a source of knowledge about developing community.
- It makes sense to favor opportunities for investment that are based on shared interests and assets over those originated in a perception of disability related needs. The desire to try out belonging to a diverse group of gardeners is a better foundation for learning than composing a group to occupy people so their families can have a break and the people can socialize. Those who garden will also socialize and have time out of the house; they will also encounter new people and new experiences and spend time as one of a group of equals rather than someone cared for or supervised.
- The world of waiver-funded services trends toward applying expert knowledge derived from published evidence. These initiatives create knowledge in a different way. Expertise comes from reflecting on experience in trying things together that are guided by a positive vision. Knowledge is generated in conversation, shared in stories, grown from telling, re-telling and updating stories, and encoded in practices that have worked.