Citizen Politics

...But its population, like that of other homes, has shifted in recent years toward those who are infirm and disabled...

...The Lazarus Project is a four-year-old effort to develop an alternative to the medical and therapeutic models that typically govern decision making in nursing homes...

...their lack of attention to context thwarts innovation and creativity...

...Teaching civic concepts develops competence in critical thinking, debate, and reflection...

...The way residents and staff addressed a near-universal nursing home complaint—slow staff response to resident "call lights"— illustrated this pattern...

...Moreover, the best community organizing has posed citizen capacitybuilding as a central theme...

...The authors appreciate the help and insight of a number of readers, including especially Gil Cleary, Pam Hayle, Peg Michels, and Michael Walzer...

...About 20 percent of current admissions are designated as "terminal," which means that the residents are expected to die within thirty days...

...Departments such as nursing and therapeutic activities now have much more open negotiations about issues such as staffing patterns and hours...

...For many residents, this first experience in institutional living comes after a life dedicated to "serving others...

...The paradox is that as caregivers seek to establish nurturing, caring relationships, their very intensity reinforces staff control...

...this nullity imagines that it has attained a level of civilization never before achieved...

...Lively democratic politics is a give-and-take, messy, everyday process of public work through which citizens set about dealing with the problems of our common existence...

...The focus is on care, nurturance, and rehabilitation, not on solving common problems...

...Though they may actively demand solutions and services, most Americans also look to large systems and professional experts to provide them...

...They embody our tendency to cede authority to experts and to institutionalized services...

...Activist groups and leading reformers in nursing home care were tied to the experiment, as well as educators, researchers, and regulators...

...This approach to leadership development is different from most organizing training, which stresses techniques and skills (how to chair meetings, write leaflets, put on public hearings, and so on...

...But residents talked about wishing to be in charge of the process of dying, even if this meant not complying with staff expectations or rules...

...From the beginning the Lazarus Project made many connections to wider publics...

...In contrast, residents (defined these days, in the language of Total Quality Management, as "customers") are the recipients of services...

...Through conferences, training sessions, and public discussions, staff at Augustana interacted with others in the Project Public Life network who were undertaking civic organizing initiatives in widely diverse settings, from 4-H SPRING • 1994 • 209 Health Can Reform members to school teachers, from low-income parents to public service employees...

...Yet in this case, residents organized public forums to discuss the use of call lights to summon help, involving staff and residents alike...

...Scientific knowledge in health has brought great benefits, but reliance on expertise has also tilted the American health system strongly toward acute care rather than prevention and self-help...

...Augustana is a large Lutheran nursing home in Minneapolis that employes an administrator, fifteen managers, and five hundred staff members for its three hundred and seventy residents...

...In Augustana, 85 percent of the residents are women...

...The move to a nursing home is often a traumatic life transition, perceived as a "last stop...

...CMCA has found that citizens are eager to be challenged to see their own roles in broad and multidimensional ways...

...The Pew Health Professions Commission's extensive sifting of polling data on health issues over the past thirty years shows a notable shift...

...The question is how to renew civic spirit...

...Despite erosion of public life, signs of civic ferment on health issues have begun to reappear...

...The committee convened a large public forum to discuss death and dying, with staff, residents, and others connected to the nursing home participating...

...Louis, Miaisha Mitchell, community affairs director at Central Medical Center, an acute care, historically black hospital in the inner city, similarly found wide responsiveness to the civic organizing approach of Project Public Life when she attempted to change the hospital's relationship to the community...

...In strong community organizations today, an extensive political education is crucial: what people learn out of any particular campaign about power relationships, accountability, negotiation, public presentation, and understanding of the diversity of interests and perspectives is as important as resolution of the issue itself...

...Such an approach stresses the importance of ongoing discussion about core civic ideas, deepened and integrated as people apply them in daily work...

...Such experiences illustrate new possibilities for health reform...

...The intimate quality of such relationships, in the absence of more public practices, generates an obligation on the part of the resident, who is expected to respond with appreciation...

...Given the huge vested interests of the health system, this will not generate the political energy necessary for major reform...

...When asceticism was carried out of monastic cells into everyday life and began to dominate worldy morality . . . fate decreed that the cloak should become an iron cage...

...Staff had been convinced that the subject would unduly upset residents...

...Yet power relationships in health settings are different than in most environments familiar to progressives through labor or community organizing or advocacy campaigns...

...Such groups have challenged the professional monopoly of power and authority, seeking to relocate authority for health care to "amateurs" and to those with health problems themselves...

...I don't know any other institutions you would be in, other than the army, where you are as regimented as you are in a nursing home," observed Pam Hayle, director of therapeutic activities at Augustana...

...Grievances about re Health Care Reform sponse times normally result simply in unanswered demands for increased staffing...

...Many feel overwhelmed by the needs of increasingly frail elders...

...it leaves little room for residents to make contributions to the setting...

...Against such a background Lazarus Project has asked, "Can staff, families, and residents learn broader civic identities and assume new roles in helping to create their environments...

...But their success rests upon keeping in focus a framework larger than specific issues...

...But to us it seems a natural part of the process of moving into a nursing home...

...For all their strengths, both community organizing and self-help groups largely neglect strategies for changing the roles and power relationships within health provider organizations themselves...

...These include mushrooming networks that support self-help and mutual aid, community prevention campaigns, and wider public discussions about the need for a balance between common sense and technology on questions such as the prolongation of life...

...Today, advocates of reform in professional health education and practice address the power dynamics of expert-client relations from the provider side...

...In Project Public Life, a grass-roots civic organizing and education project that is part of the Center for Democracy and Citizenship at the Humphrey Institute of Public Affairs (University of Minnesota), we have seen ordinary people bring about change in their institutions and communities in relation to health in a variety of environments...

...Most important, they dealt with deeper issues for which there are no easy solutions, such as feelings of dependency and overwhelming responsibilities...

...New staff get much more explanation of the reasons for patterns of staffing, and supervisors report higher morale...

...For staff, a common goal is to "empower clients," but empowerment is conceived in individual and psychological terms, a condition one can "give" to another...

...Managers have sought a less personalized and cautious style of interaction, showing that one can disagree in public and still maintain respectful relationships...

...Effective long-term problem solving requires robust civic participation—challenging the expert model for reasons of practicality as well as for reasons of equity and fairness...

...beginning in the eighties, there was a strong countertrend showing support for civic agency in many forms...

...Self-help efforts draw important attention to the healing capacities of those with disabilities and to the power of mutual support and communal contexts for achieving independence...

...For instance, decision-making authority about residents is typically claimed by the staff members who "care" the most for residents...

...If the conversation remains a technical one about what we get and how, concerned only with access, financing mechanisms, and cost containment, most people will be cast as consumers whose "power" consists of individual market choices...

...Feelings of powerlessness pervade nursing homes...

...Talking about these led to more effective use of call lights by residents and more attentiveness by staff...

...Civic Organizing The challenge of citizen politics in health settings is how the different actors—providers, regulators, educators, those cast as clients, family, or community members—can develop more collaborative practices...

...In Starr's terms, popular health practices have lost public authority...

...Through the seventies, people expected their health to be taken care of by experts...

...This greater openness has infused many staff, resident, and family interactions...

...There's more conversation now," said Kathryn Kading, director of nursing at Augustana...

...SPRING • 1994 • 211...

...Nursing homes vary according to size, urban or rural location, and affiliation with a community or ethnic or religious tradition...

...Augustana has not undergone a complete transformation as a result of the Lazarus Project, but it has seen notable changes...

...Yet the introduction of civic concepts can also work dramatic change...

...Marie Klinghagen, an organizer for CMCA in Hutchinson, Minnesota, observes that "people feel very left out of government and public problem solving today...

...Augustana has traditionally been a site for retirement of relatively healthy older people and continues to have many people who are not incapacitated...

...From the perspective of democratizing health care, community organizing also has limits...

...Efforts at civic reform in nursing homes offer insights for the reintroduction of civic agency in health...

...A serious conversation about death developed...

...Staff members themselves express frustration at their inability to deal effectively with increasing demands for physical and emotional care...

...Strategies for democratization need to include more than conflict and struggle...

...In these service systems, roles are generally categorized in two ways...

...The Lazarus Project A nursing home setting vividly illustrates how civic action can affect the issues that must be addressed if democratization of our health care system is to be achieved...

...More subtly but perhaps most important, it generates the kind of robust political self-confidence that has been lost in modern life, but which is especially critical to any process of democratizing information and service environments...

...She developed an initiative called "The Saturday School for Children Program," which involved teenagers' learning and also teaching concepts such as public and private, power, self-interest, and citizenship, and applying organizing strategies to issues that they have a stake in, such as drug use and teen pregnancy...

...Government regulations and traditions combine to constrain residents and staff alike to narrow, scripted patterns of interaction...

...Civic concepts are especially difficult to introduce and bring to life in a nursing home...

...But to date the debate reflects the dynamic described by Max Weber, through which a spreading pattern of technical rationality and expert-client relationships has hollowed out the civic culture of everyday life...

...There are immense barriers to individual and collective agency within the therapeutic cultures of long-term care institutions...

...Intellectual historian Thomas Bender has described this as the shift from the nineteenth-century "civic professional," who interacted with a hetereogeneous public in the civic culture of particular places, to the "disciplinary professionalism" of today...

...Care providers' primary function is to serve the residents...

...Authority in health resides in knowledge often assiduously acquired, which cannot quickly or simply be transferred...

...it testifies that people can be theorists of their everyday experience and of the larger world...

...In CMCA, strategy 210 • DISSENT Health Care Reform teams represent a wide array of community interests, including young people, who spend considerable time in defining what "the problem" of underage drinking is in the context of their specific communities...

...In response, staff spoke of their anxiety when what they thought of as "best possible care" conflicted with resident wishes...

...More broadly, the regulatory environment emphasizes standardized, unimaginative actions...

...Staff describe how working with "my residents" fills emotional needs "to be appreciated" and "to make a difference in someone's life...

...An array of self-help organizations, independent residential centers organized by and for people with disabilities, and women's health projects express this trend...

...Health care has been shaped by broad patterns of urbanization, the growth of the corporate economy, and the SPRING • 1994 • 205 Health Care Reform development of mass communications systems, all of which have undermined communal authorities and popular self-confidence about citizens' role in public affairs...

...they rarely see themselves as responsible, creative actors in any policy setting...

...Its point is to build "power organizations" that involve large numbers of people and have an impact on centers of political and economic power...

...Strict reliance on disciplinespecific principles, they argue, can thwart professionals' own aspirations toward problem solving, effectiveness, and craft...

...This requires the development of generalist abilities to work across disciplines, with a variety of community interests, in a collaborative style, with more attentiveness to specific contexts...

...Reformers call instead for a new professional practice that involves a more reciprocal relationship between client and practitioner...

...Such experiences and ties created a civic stage for work at Augustana...

...By itself, a rights approach can lead to an increasingly dense regulatory environment that further limits innovation and experimentation...

...Yet generally they have a stark, institutional quality that reinforces regimentation and dependency...

...The story of health care recounted by Paul Starr in The Social Transformation of American Medicine illustrates civic erosion...

...The dilemma for professional reform is not simply how to increase skills but also how to change identities: as in other professions, health providers learn to derive their status, visibility, and material rewards—their public goods— from what are essentially private reference groups of fellow professionals...

...Residents responded, "We know the topic is hard for the staff...

...Thus, civic renewal in health has the double challenge of taking on the general problem of civic disengagement and the formidable institutions and ingrained patterns of action that render most people spectators of health care, consumers of services...

...The decline of civic involvement in public life means that people lose a sense of their stake in society...

...The Lazarus Project has sought to create an alternative "public community" that integrates civic concepts into the everyday work of staff and residents...

...On the consumer side, community action groups often take up health issues—environmental questions such as toxic waste and lead paint, preventive campaigns such as childhood immunization or teen drug and alcohol use...

...After the first year, we realized that the issues were the dessert, not the main meal," recounted Andres Sarabia, first president of the COPS group in San Antonio...

...It also differs from a newer approach, which seeks to mobilize communities around policy changes devised by professionals...

...Some staff thought that discussion of death might threaten the image that Augustana wished to project, as a place for living...

...The nursing home is associated with a larger campus of four hundred apartments in four adjoining high rise buildings...

...It illustrates the energy and power of public life, even where least expected...

...Concepts include politics itself, public spaces and their difference from private environments, the diversity of interests, and power conceived as interactive and relational...

...Democratic change in health settings necessarily involves conflict and difficulty...

...Health providers necessarily worked with people rather than simply on them...

...Ways to develop rituals and richer conversations about death and dying are now incorporated into Augustana's planning process...

...Mitchell was able to involve dozens of community organizations, from African-American sororal and fraternal groups to churches to Alcoholics Anonymous, in community outreach efforts on preventive health...

...Though they may have answers and insights, no one has asked them...

...that's why we don't talk about it...

...The forums provided space to air varying points of view and to generate solutions that neither staff nor residents alone had imagined...

...The problem is that their stance is that of protest, looking at medical authority as simple usurpation: issues tend to get posed in Manichaean terms reminiscent of sixties' protests...

...Today's health system reflects the rise of specialized knowledge as the basic currency of public problem solving...

...A therapeutic culture sees people in terms of their needs, not their capacities...

...The effort was funded 206 • DISSENT Health Care Reform through a capital campaign in 1989 that had as one of its goals to build a more "empowering community...

...Of this cultural development, it might well be said: "Specialists without spirit, sensualists without heart...

...Though popular and "nonofficial" medical practices have reemerged, they remain a subterranean, largely overlooked dimension of health care in the present debate...

...Groups that have made civic competence central, such as Communities Organized for Public Service (COPS) in the barrios of San Antonio, East Brooklyn Churches in New York, or Shelby County Interfaith in Memphis, Tennessee, have dramatically affected local development patterns, taxes, housing, health care, and many other policies...

...Modern health systems grew from specific political and social dynamics as well as the broad tendency toward the rise of expert authority, patterns in higher education that increasingly privileged a "scientific" model of professional training and credentialing, doctors' own skillful self-organization, and the removal of health care from communal and informal settings to highly structured institutions...

...Confrontation alone can rarely bring about lasting change...

...Citizenship, taken seriously, involves responsible public action...

...For instance, Communities Mobilized for Change on Alcohol (CMCA), a joint project on teenage alcohol use in seven counties of Minnesota and Wisconsin—undertaken with the Department of Epidemiology at the University of Minnesota—differs from customary campaigns on such issues, which mainly target individuals for "education" about the deleterious consequences of drinking...

...In nineteenthcentury America medical and health practices included many contending and diverse strands, from home remedies, Native American medical traditions and popular healing practices to more formally credentialed medicine...

...Yet in this session an earlier discussion of the concept of public spaces as arenas for talking about difficult problems led to a breaking of the silence...

...their lot is to express satisfaction or grievance...

...Changes in roles and identities are required, as well as changes in institutional arrangements...

...In St...

...Yet the intrinsic nature of bureaucratic regulations is at odds with the particularities of individuals and environments...

...Such a stance has generated a wide focus on patients' rights within institutional health settings, on the view that people need protection from the system, but it does little to democratize the system...

...Community groups characteristically come at service institutions from the outside, as advocates and protestors, rather than as agents for change in the authority structure of health care itself...

...Augustana is a not-for-profit organization whose revenue sources are largely Medicare and Medicaid...

...The Lazarus Project also has lessons for grass-roots community action...

...So the usual coffeeshop talk is about the stupidity of government, schools, police, courts, and so forth...

...In other instances, too, people at Augustana have experienced an enhanced sense of power in situations that otherwise render them help less...

...The basic struggle for residents is to learn how to live within the system...

...The Lazarus Project has illustrated the importance of framing changes in providers' roles within more public contexts...

...The main meal was what people were learning about grass-roots politics...

...However much it goes against the grain, staff, family, and residents also desire a more open, public process of 208 • DISSENT conversation that brings difficult problems to the surface, instead of suppressing them...

...The therapeutic activites department has openly debated how to distribute allotments for salary increases...

...Nursing homes dramatize our inability as a society to deal in public fashion with issues surrounding infirmity and death...

...Democracy, understood as the renewal of a vibrant public life that can break apart Weber's iron cage, must come to health environments if we are to make lasting progress toward creating a genuinely healthy society...

...to an understanding of what we can accomplish by collective action...

...Augustana, like most nursing homes, avoided open discussion of death...

...It was undertaken by the Augustana Home in partnership with Project Public Life...

...And health addresses profound questions of our lives and our society: how we deal with aging, infirmity, violence, environmental health hazards, our power over our own destinies, death itself...

...Although these facilities provide longterm rehabilitation for men and women who eventually return to their homes, the majority of residents are frail elders, increasingly incapacitated, who remain in residential care until they die...

...many come from working-class backgrounds, where their public work involved church, community, and homemaking...

...Yet Project Public Life has found that the conceptual framework of "citizen politics" allows ordinary people and health institutions alike to develop new roles, identities, and power relationships around major issues...

...Power concedes nothing without demand, it never did and never will," Frederick Douglass once observed...

...The importance of creating larger civic contexts in which people can rethink their actions, clear in the Lazarus Project, is relevant to health issues more generally...

...Citizen politics confronts their inaction because it gives them a way to do something, and helps them appreciate having experts available [as 'on tap, not on top] rather than making fun of them...

...Perhaps most important, the public discussions helped establish a more open process in which residents and staff alike ask questions, share stories, and discuss struggles with dying...

...Skilled conceptual thinking about politics conveys the simple but transformative message that ordinary people as well as those who are credentialed as experts can think well and seriously...

...For many, this is the first experience in institutional living...

...A poignant example occurred early in the project, when a chaplain intern remarked to a joint committee of residents and staff that it was hard for her to see so many people die...

...The health reform debate needs to engage people far more deeply about the civic roles and responsibilities we all will have to take on as members of families, communities, and the nation...

...Their own sense of powerlessness, compounded by pressure to avoid mistakes in their work, limits their ability to experiment and take risks, to recognize the messy, ambiguous nature of much public work, to imagine change or to assume new roles...

...At the heart of the Lazarus strategy has been an approach to leadership development adapted from the most effective strategies in community organizing...

...Yet there are growing challenges to professional authority as well...

...More than six hundred federal SPRING • 1994 • 207 Health Care Reform and state regulations aim at "creating empowering communities...

...The project has demonstrated that even within highly structured, hierarchical environments such as nursing homes, staff, family members, and frail elderly residents are willing to take on more substantial roles in decision making and problem solving in order to shape the environments in which they live or work...

...Many recommendations emerged for changes in community rituals related to death...

...To create a workable health system in both the short and longer term means we will have to move from the question, "What's in it for me...

...If there is no struggle, there is no progress...

...Max Weber, The Protestant Ethic and the Spirit of Capitalism he Clinton administration has served the nation well by insisting upon the need for reform in our health system...