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Community Power in Population Health Improvement: Proceedings of a Workshop (2022)

Chapter: 6 Community-Led Transformational Narratives

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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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6

Community-Led Transformational Narratives

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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During the fifth session of the workshop, participants highlighted place-based initiatives in creating health equity, discussed effective methods of leveraging power at the community and state levels, and explored the interplay of personal narrative and community power building. Gary Gunderson, vice president for faith and health at Wake Forest Baptist Medical Center, and Arvind Singhal, endowed professor and director of the Social Justice Initiative at The University of Texas at El Paso (UTEP), co-moderated the session.

AGENCY AND COMMUNITY POWER

Gunderson introduced the panelists as agents of community power who navigate power relationships in community settings that are marked by dramatic inequity along predictable lines of race, ethnicity, language, and legal status. He referred to his religious tradition’s use of the Greek term dunamis to describe the demonstrations of community power evident in the programs led by the panelists. Framing the process of community building as power has not been entirely welcome, even within the National Academies, said Gunderson. Community building is often simplified to a process of creating venues for programs offering best practices, as defined by academic evaluation. This conception overlooks the multi-relevant phenomenon that is power.

The Leading Causes of Life framework centers the agency of every individual in its conceptualization of community (Gunderson and Pray, 2009).1 The universality of this energy, which some call “spirit,” is responsible for the development of morals and individual accountability for choices, said Gunderson. Individual humans, neighborhoods, institutions, and political bodies all have agency. He remarked that this session’s speakers facilitate, nurture, provoke, evoke, and align that universal energy—which cannot be introduced to a community; rather, it must be summoned from within the community. At times, this process can be described as “getting institutions of privilege to remove the knee off the neck of community,” he said.

Gunderson offered an example from a webinar he had recently participated in, which brought together representatives from public health, a major community coalition, and a health care system in Saint Paul, Minnesota, to discuss how a group of 60 community organizations—most of them faith based—could support the COVID-19 vaccination effort. Curious, he asked the organizer how far her office was from the site of George

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1 This assets-based framework focuses away from deficits and causes of death, instead identifying strengths in the following areas: agency, coherence, connection, intergenerativity, and hope.

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Floyd’s murder.2 He learned that her office was 10 blocks away from the killing and her clinic was burned during the riots. All 60 organizations were deeply involved in the community’s power dynamics, and joining in the community rage and resistance gave them credibility in advancing effective vaccination efforts, Gunderson posited. In spite of this power dynamic’s relevance to a major public health effort, the webinar did not discuss it. This session of the present workshop was designed for agents of community power to transparently describe their labor and the art of manifesting community power. Gunderson noted that these stories are not entirely safe to tell nor entirely safe to hear.

Singhal said El Paso, Texas, the border town where he lives, is a magical, bilingual, bicultural, binational environment. Of the 25,000 students attending UTEP, 70 percent are first-generation college students and about 10 percent live across the border in Mexico. The university is near the Walmart where 22 people were killed and 26 were wounded during a shooting on August 3, 2019. El Paso once again made national news in November 2020, when one of the worst COVID-19 surges in the United States required the use of refrigerated morgue trucks. Singhal said health inequities and the number of multigeneration homes contributed to the community’s virus surge. Nonetheless, El Paso met the pandemic with action. He recounted recently receiving his COVID-19 vaccination on campus in a campaign organized by the UTEP Schools of Pharmacy and Nursing. The person who administered his vaccination—while mentoring an apprentice in the process—described living across the border and having to leave home at 6:30 a.m. to arrive at work on time. This agency in action is the power and spirit of community, said Singhal, and it is often not mentioned in the national news. He noted that each of the panelists were requested to present an image that represents their efforts to bring forth that energy in their communities.

THE POWER IN HONORING CULTURE

Rashida Ferdinand, founder and executive director at the Sankofa Community Development Corporation, is from the lower Ninth Ward area of New Orleans, Louisiana.3 In 2008, she started her organization with the goal of improving the quality of life for people in her neighborhood by addressing systemic barriers that cause health inequities and dis-

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2 George Floyd was killed on May 25, 2020, by a Minneapolis police officer who pressed his knee on Floyd’s neck for nearly 9 minutes. Video footage of his death led to worldwide protests for racial justice and an end to police brutality. In Minneapolis-Saint Paul, protests escalated to riots that involved arson and looting.

3 More information about Sankofa Community Development Corporation is available at https://sankofanola.org (accessed March 6, 2021).

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
×

parities. The organization’s mission is to build healthier communities for generations to come. She presented the image of her organization’s logo, which features a drawing of the mythical Sankofa bird turning toward its tail feathers. The organization adopted the concept of the Sankofa bird from the Akan people in the Ghana and Sierra Leone areas of West Africa. This mythical creature is said to look over its tail while walking forward, symbolizing the process of looking at the past while finding a future path. The name Sankofa was generated from multiple words that have been joined together vernacularly, and it means “go back and fetch.”

The Sankofa concept is relevant because people bring culture, history, and knowledge they want to pass on into efforts to move the community forward, said Ferdinand. The people, memories, experiences, and connections within a community form a rich foundation that her group strives to acknowledge and appreciate. While projects, metrics, outcomes, systems, logistics, financials, and all the details of running an organization are at play, the core intention of the work is to focus on people and the quality of their lives, which involves inclusively honoring and respecting where people come from. Ferdinand stated that honoring ancestral culture is a universal concept, and the Sankofa bird—which she has been drawing since she was a child—is one way to symbolize it.

Singhal responded by highlighting a quote he attributed to Nelson Mandela about never forgetting where one comes from and never forgetting about where one is headed: “We owe it to our ancestors” and “we owe it to our children.” He noted Ferdinand’s acknowledgment of where she came from, where her community is, and the desired generational outcomes for the future.

GO AUSTIN/VAMOS AUSTIN COMMUNITY INITIATIVES

Carmen Llanes Pulido, executive director at Go Austin/Vamos Austin (GAVA), presented a collage of photos from the last large gathering of its coalition in Austin, Texas, before social restrictions related to the COVID-19 pandemic were put into place.4 The collage included images from a variety of settings, including classrooms, homes, and neighborhoods. One photo captured a walking tour given by community members to institution representatives that highlighted infrastructural challenges faced in the neighborhood. This tour is part of GAVA’s community climate resilience work. Other pictures captured house meetings and school events at which participants collaborated on place-based efforts to build community power for health equity. Solutions are designed for the locations

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4 More information about Go Austin/Vamos Austin is available at https://www.goaustinvamosaustin.org (accessed March 6, 2021).

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
×

where people live, work, learn, play, and worship with the goal of making healthy living accessible and equitable in relevant ways.

Despite much work being performed remotely during the COVID-19 pandemic, GAVA has had a busy and productive year responding to community needs such as access to healthy food and safe physical activity, said Llanes Pulido. The COVID-19 pandemic has disproportionately affected many of the neighborhoods that community organizers are working in, making this work all the more relevant. Llanes Pulido noted the significance of the National Academies of Sciences, Engineering, and Medicine hosting a workshop focused on power, which she viewed as a reflection of the progress achieved through a tremendous amount of action toward community building.

Singhal shared a filmmaker’s comment that “The camera denies the existence of what it does not see.” If the camera animates and explicates the photographer’s focus, he added, GAVA’s collage emphasized the importance of conversation and the power of engagement. Gunderson commented that no one in the collage is looking at the camera, instead looking at each other in earnest dialogue. Singhal replied that this reflects “ubuntu,” the African philosophy of “I am because we are”—that one’s sense of self is shaped by relationships.

CHURCH-BASED COMMUNITY SERVICES

Daniel Sostaita, pastor at Iglesia Cristiana Sin Fronteras (ICSF), spoke about the work his ministry carries out in Winston-Salem, North Carolina.5 He commented that while people may view Jesus as someone with all the answers, he was actually a man who asked many questions. Notably, Jesus approached others with the question, “What can I do for you?” Striving to follow Jesus’s example, Sostaita said he centers his practice around that question.

ICSF is part of a coalition that provides a number of services to the community. In collaboration with Wake Forest Baptist Health (WFBH), mobile health clinic services—including COVID-19 testing—are available at the church on a weekly basis. Through a partnership with two local hospitals, WFBH and Novant Health, a mammogram program is offered at the church twice per year to women who lack health insurance because of their undocumented status. Additionally, the church hosts events offering free flu shots, hot meals, a clothing closet, and, during the COVID-19 pandemic—free face masks. In collaboration with Love Out Loud, Second Harvest Food Bank, and other partners, ICFS provides grab-and-go meals.

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5 More information about Iglesia Cristiana Sin Fronteras (Christian Church Without Borders) is available at https://www.iglesiacristianasinfronteras.org (accessed March 4, 2021).

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Furthermore, the church is part of a task force composed of organizations such as FaithHealth, the Forsyth County Department of Public Health, Red Latina (CBF NC), and Radio Onda de Amor (Wave of Love). The task force provides outreach services in which food, face masks, and health information are offered in various neighborhoods. A weekly program on Radio Onda de Amor provides radio listeners with conversation and resources around health. ICFS partners with the Winston-Salem Foundation and the Jefferson Christian Church to provide financial assistance to undocumented immigrants for needs such as food, rent, and utilities. The church also links specific populations, such as women who have experienced domestic violence and boys who have substance abuse needs, to therapy services. Sostaita said he centers Jesus’s question of “What can I do for you?” in organizing this range of support.

Gunderson described Sostaita’s work as releasing the power of the community to counter oppression. He offered an example of Sostaita organizing 250 community members to hold the school system accountable in regard to the radical disparities seen during the COVID-19 pandemic. Therefore, Sostaita goes beyond organizing services for the community in amplifying the community voice to hold local politicians accountable for educational administrative decisions. Gunderson said the art of encouraging the flow of community power is versatile, sometimes involving partnering to provide mobile health services at the church and other times influencing the school system to hire more bilingual staff. All of these actions are expressions of agency and of power.

POLICY ADVOCACY FOR HEALTH EQUITY

Christine Petit is an active leader in the Long Beach community who served as founding executive director at Long Beach Forward (LBF). She discussed her experience with the Building Healthy Communities Long Beach (BHCLB) project, an initiative through The California Endowment that led to the creation of LBF. Petit presented a photo taken a decade ago of tables of people reviewing drafts of a governance document for BHCLB. While the initiative also hosted outdoor community events, spent long evenings at city council meetings, and organized protests, she chose to highlight this image because it features people with different connections to the community working together. Three women sit in the forefront of the photo: one was a representative from the mayor’s office, another was a community resident and leader, and the third was an organizational leader. Petit described LBF as the glue that brings together residents, community organizers, and decision makers, providing them with the tools and resources they need to create positive change. LBF supports community leaders and works to advance equitable policies. The

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
×

organization operates from the belief that everyone in Long Beach should be able to influence the decisions that affect their lives, but often low-income communities of color are left out of decision-making processes.

The ability to influence decision-making processes can literally be a matter of life and death for Long Beach residents because there is a 7-year life expectancy disparity between zip codes in Long Beach, said Petit (City of Long Beach Department of Health and Human Services, 2013). She added that this gap expands when comparing census tract data, which reveals that the life expectancy for residents in whiter, wealthier zip codes is as much as 17 years longer than in areas largely comprising low-income people of color. LBF works to ensure that residents who are typically left out of decision making are heard on matters of environmental justice, economic inclusion, equity in education, and more. While advocates are not always understood or welcomed in city hall or at the school district, BHCLB and other initiatives have successfully changed more than 40 policies and practices in Long Beach, remarked Petit. This coalition of more than 50 organizations achieved these changes by shifting the narrative from exclusion to inclusion, highlighting systemic inequities, and uplifting the experiences of people most affected by these issues.

Singhal commented that the photo shows several people absorbed in thought and others engaged in animated conversation, which indicates it was a space where various groups and different voices could co-create moments of reflection and of conversation.

COMMUNITY-CENTERED REVITALIZATION

Michelle Carrillo, director of programs and community solutions at Humboldt Area Foundation, is from Del Norte County in northern California.6 While this region has been Mee-shvm-dvn—or a place of plenty—for the Indigenous Tolowa people since the beginning of time, the community has also experienced great losses in the forms of genocide and a boom-and-bust economy over the past 150 years. However, the community members help one another in times of disaster, including during the current COVID-19 pandemic. Her predecessors had the forethought to collectively build a community founded in service for the benefit of future generations, said Carrillo. Reaching across arbitrary county and state lines, they have worked toward a vision of a thriving, just, healthy, and equitable region.

Carrillo described the area as a “small, predominantly white, rural, conservative community where the redwoods meet the sea,” and it has

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6 More information about Humboldt Area Foundation is available at https://www.hafoundation.org (accessed March 7, 2021).

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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been a place of change, growth, and perseverance toward achieving a greater purpose. In 2011, Del Norte County ranked 55th out of 58 counties for health outcomes in the state of California (University of Wisconsin Population Health Institute, 2011). At that time, Carrillo was 22 years old and had just returned home from college to begin her career. The 2008 Great Recession was still affecting this rural community, and the perception that success could only be achieved by leaving the area was common. However, she saw returning to her home community as a path to a meaningful career and livelihood. Even while navigating life as a single working mother, she found deep connections with people who believed in her and invested in her development as a leader in systems change for health equity. That year, community leaders began a decade-long journey to build a healthy community by way of The California Endowment’s Building Healthy Communities initiative.

At the start of the process, the notion that Del Norte could succeed in collaborating across party lines, systems, governments, and nations to address health equity seemed unlikely, said Carrillo. The vision of a community that fosters the dreams of every child sounded radical and unattainable; nonetheless, the work was carried forward. Setting universal goals around literacy, food access, and other critical intervention points, the coalition adopted an empathetic lens in understanding the barriers and systematic oppression many community members were experiencing. They created space to reimagine the future and to co-design solutions to realize envisioned possibilities. Today, Del Norte is ranked 45th out of 58 counties for health outcomes in the state (University of Wisconsin Population Health Institute, 2020). Carrillo said her community has achieved progress by shifting the way people think about themselves, their neighbors, their community, and their future. Singhal remarked on the value of acknowledging predecessors, creating spaces, holding conversations, and drawing upon personal narratives.

DISCUSSSION

Personal Impact of Community Power

Gunderson asked the panelists what they have learned about themselves and about community power building from the communities they serve. Referencing Carrillo’s narrative of returning home and being blessed by her community, Gunderson posited that communities trust leaders seen as being transformed by their membership in the community. He asked about the personal effect the power of community has had on the panelists.

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
×

Ferdinand responded that Gunderson’s statements are consistent with the empowerment narrative of the Sankofa organization. Rather than viewing the organization as empowering others, the staff at Sankofa see the organization as part of an ecosystem in which everyone is working and learning together. This enables Sankofa staff to understand the wisdom of the community members with whom they work. They are able to understand the importance of the work beyond the confines of studies, theories, or public health datasets. People at Sankofa are themselves transformed because they operate at the ground level to create work that the community relates to, said Ferdinand. The work is centralized around collaboration, not merely based on preset concepts of Sankofa’s identity and agenda. The organization uses a community health ambassador model, in which community members, leaders, and other stakeholders formulate programs, plan systems, and make decisions for future efforts. This type of communal decision making creates transparent approaches that foster project sustainability, Ferdinand stated. When work belongs to the larger community, power and space are created to facilitate it. This signifies the difference between holding onto power and building power with one another. Singhal commented that this perspective of leadership looks beyond “Who am I?” to “Whose am I?”

Llanes Pulido remarked that she has learned to pay attention to what is said explicitly and what is omitted. Power dynamics and systems of oppression should be discussed explicitly in conversations about power, she contended. She shared GAVA’s origins as an initiative before its independent incorporation. Inspired efforts funded by The California Endowment (TCE) and increasing statistical findings nationwide indicating that zip codes are better predictors of health outcomes than genetic codes, the Michael & Susan Dell Foundation catalyzed a 5-year, place-based childhood obesity intervention. Llanes Pulido recalled constructive critique from an equity specialist who grew up in Dove Springs, a neighborhood in southeast Austin at the center of GAVA’s work. This colleague asked the initiative’s catalyst funders, “When you say, ‘zip codes,’ what are you not saying?” and followed this with additional questions about the commonalities among people living in those zip codes and the reasons why they live there. Aliya Hussaini, the lead catalyst program officer, knew from her practice as a pediatrician that to be effective, the initiative would have to move beyond trying to influence individual behaviors, and look at community access to the resources people need to take care of themselves in a healthy manner. Llanes Pulido said the funders were curious and flexible in allowing the project to adapt to community needs, but they still ran against constraints and found tension among partners with each shift in addressing root causes.

A few years later, GAVA became an independent organization and began explicitly talking about power and antiracism in an intersectional

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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way. This created space to discuss neighborhood stability and climate resilience as essential lenses in driving longitudinal health outcomes and the associated long-term sustainability of communities. Llanes Pulido said short- and intermediate-term health initiatives are of limited value if people continue to be exposed to forces that are negatively affecting them, or if they are displayed from the communities that support their health. This shift in focus made it more difficult to secure funding as a place-based health initiative among traditional funders of childhood health, she noted. However, by using creativity, community organizing, and collaborative strategic planning, the organization worked to galvanize power not only across residents, but also across institutional partners and philanthropic funders taking the lead from frontline communities addressing health equity.

Singhal remarked that Bobby Milstein, director of systems strategy at ReThink Health, often says that growth takes place in the direction of the questions asked, which not only involves asking the right questions, but also being aware of what is not being asked.

Sostaita emphasized the importance of listening to the needs of the people. He offered an example from ICSF’s early days when traffic stops (checkpoints) deterred immigrants from coming to church. Police would stop people in their neighborhoods who lacked driver’s licenses because of their undocumented status. ICSF partnered with several organizations to encourage the police department to move the checkpoints. Sostaita added that relationships can create a strong community. In another example, the police department shortened the amount of time in which one could apply for a U visa (abuse or violence), which caused some people to lose the possibility of resolving their immigration status. Through a relationship with the chief of police, ICSF, along with the North Carolina Latino Congress, successfully advocated for the time period in which one could apply for a visa to be extended to 5 years. He commented that many people are on the “dark side,” and he works to build bridges to bring them to the light. Sostaita said this work has changed him, because he has come to share in the needs and sadness of the people with whom he works.

Petit said that she has been transformed by this work through watching people who have lived in Long Beach their entire lives begin to understand how power moves and how decisions are made in their community. As they learn how to organize to affect decision making, they found their power. She described being particularly inspired by youth organizing, as the lessons these young people are learning will stay with them throughout their lives. These efforts shift the narrative from an expectation that the status quo will remain in place to people using their voices

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
×

for change. Furthermore, health can be a through line for discussing inequities. Redlining policies and other racist practices led to zip code–related health inequities, said Petit.7 She noted these issues extend beyond Long Beach to the nation at large. LBF has worked to be more explicit about race and class, and it organizes around a vision in which race, class, and income do not determine one’s future in Long Beach.

Carrillo remarked that centering race in this work has been an evolving process, especially in her area of northern California, where many people do not acknowledge the continued relevance of race. While inequities exist, systems have been built to mask them, she said. Traditional community engagement can be transactional, with quantifiable goals created around event attendance and survey completion. Community engagement becomes meaningful when power is discussed and listening is prioritized. For instance, organizers seeking to help children develop literacy skills can visit with mothers in their homes on the tribal reservation, learning about the daily lived experiences of the mothers and their children. The organizers and mothers can then co-design solutions together. Rather than approaching mothers with interventions, Carillo added, this work involves acknowledging the barriers built by an entire system of oppression, including lack of access to preschool, healthy food, and transportation. Having resources in place enables people to make decisions for their children that foster success.

Power as Health

Gunderson suggested that power can expand beyond working toward health to being an embodiment of health in and of itself. For instance, empowered communities may be more likely to mobilize vaccination efforts. He posited that this expression of agency and the energy it generates are healthy, and he asked Ferdinand to comment on this concept of “power as health.” Ferdinand responded that Sankofa has made health the core aspect of its programming and approach to the work, because people may not perceive themselves and their health as primary. For instance, in moving through daily activities, people may not pause to consider factors that are affecting their quality of life, longevity, and propensity to become chronically ill, as well as leading to disparities that affect health outcomes. Health is core to all those aspects, and one’s quality of health is contingent on access issues, said Ferdinand. This includes access to tangible items like healthy foods, as well as more abstract elements, such as a safe, stable living environment. Living situations involving stressors and trauma not

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7 Redlining is a discriminatory practice in which financial services such as mortgages, insurance, and loans are systematically denied based on race or ethnicity.

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
×

only affect biometric health, but they also affect social and mental health, parenting decisions, and family and community dynamics.

The Sankofa organization originally focused on food and community, noted Ferdinand. In 2008, only a few years after the community was devastated by Hurricane Katrina, the organization’s initial project was a monthly marketplace. The creation of a venue for people to gather and engage with one another while buying fresh produce was rooted in an acknowledgment that healthy behavior extends beyond diet. The act of communing with one another and exchanging stories and love with neighbors can generate hope and yield health benefits, said Ferdinand. Environment also plays a role in health and community. To this end, Sankofa is involved in a project in which 40 acres of underresourced, neglected green space is being transformed into a community wetland park. Additionally, a commercial space in the neighborhood will be repur-posed into a Fresh Stop market that will sell fresh produce and feature a learning kitchen for the community. Other opportunities for community revitalization are enabling residents to develop and own their own businesses. Ferdinand remarked that a variety of approaches to supporting health outcomes can be used. For example, transforming vacant, blighted land into commercially viable space and enabling people to learn and develop business skill sets can simultaneously support their health.

Gunderson added that public health and health care commonly refer to communities such Ferdinand’s as “underserved,” with the implication being that they have not received adequate services. He suggested that the way she discusses her community might better be described as “underliberated.” Rather than needing additional services, communities need governments and institutions to remove the barriers that impose challenges to communities’ ability to solve their own problems. Gunderson asked Ferdinand to discuss served versus liberated language. She replied that she does not use the term underserved, and prefers to describe the lack of equitable resources in her community as underresourced. Long-neglected, large disparities exist in the resources her community can access compared with those available in other parts of New Orleans, said Ferdinand.

Role of State Funding in Community Building

A participant working in a state health department asked for advice in funding place-based initiatives in communities working to use state-level power and federal funding streams to improve health equity and reduce health disparities. The participant asked how to leverage the power of a state health department to shift the flow of funding to the community without assuming a domineering role or violating community trust. Gunderson asked the panelists for examples of state departments

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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providing assistance without inadvertently hurting the communities in these efforts.

Carrillo replied that time and resources should be invested in deep listening with the community, for the community will generate solutions if given the space to do so. Institutions that approach the community with favored solutions and action items miss an opportunity to build trust and achieve the level of change that comes with community-generated problem identification and solutions. Many communities have repeated experience with this type of process—one that is done “to” communities rather than done “with” them—especially in rural and tribal areas. Furthermore, while access to data is at play, it is rarely talked about, she noted. Communities such as hers are often undercounted in the U.S. census and in data for funding, a process that can lead to community invisibility. In addition to improved quantitative data, qualitative data in which communities describe what is happening in their neighborhoods should be collected, advised Carrillo. Increased spending is required to collect the quantitative and qualitative data needed to understand the dynamics of a small community.

Petit stated that LBF has engaged with government partnerships in different ways, albeit with varying results. She advised that institutions relinquish control of structuring the process of addressing health inequities. Rather than acting as core leader, the funding institution should partner with organizations who are connected to communities at a grassroots level. Often the structure of government lends itself to working with one large organization or statewide body, but that approach does not result in resources reaching communities that are experiencing the deepest health inequities, said Petit. Instead, creative models are needed that funnel resources directly to communities and allow them to define success. As government is often the target of power-building change efforts, this approach can be challenging for government institutions, she acknowledged. However, a focus on policy and systems change is important in transforming health inequities.

Sostaita recalled a health screening conducted at his church in which an older man’s cholesterol and blood sugar readings were so high they called an ambulance. Afterward, Sostaita talked with the doctor performing the screenings and he voiced his concern that there may be many other people who are unaware they have high cholesterol or blood sugar. In building relationships with the local hospitals and the health department, Sostaita learned that the county health department had many resources available, but all were in English. He now offers weekly life-coaching classes to help community members seek out the resources they need, including the on-site health services he has organized, such as flu vaccines provided free of charge. Quoting Bible verse Matthew 7:7, “Ask

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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and it will be given to you; seek and you will find; knock and the door will be opened to you,” Sostaita said that if a person knocks, God will help. The partnerships health care providers have with the community are avenues for this help. Gunderson added that Sostaita is often “knocking on the hospital or public health door” on behalf of his community.

Llanes Pulido remarked that many decisions regarding health and education resources are not within municipal control in Texas. For instance, the city of Austin often attempts to enact policies that are considered progressive, but then receives backlash from the state. Proactive, grassroots organizing can interrupt this system by building and strengthening networks of people across Texas who are working toward the creation of just, healthy communities. She noted that the Texas corridor along Interstate 10 is experiencing the intersection of climate shocks and stressors—especially flooding and heat—as health equity issues. Politics can impede the efficient use of resources, and counties that collaborate with organizers are more likely to achieve gains during the COVID-19 pandemic, she suggested. Rural communities face additional challenges, given the comparative lack of nonprofit organizations in those areas. People in rural settings can begin organizing efforts by meeting in community centers, childcare centers, schools, churches, and with elders in the community to form a network.

Often, the very spaces for organizing and providing services to support health require protection, Llanes Pulido said. She recalled organizing in elementary schools about a decade ago regarding an unfunded state mandate to coordinate school health. While she worked to bring teachers and parents together in an effort to gain additional resources, massive teacher layoffs were taking place. Faculty were devastated that numerous colleagues were losing their jobs. In early 2020, her team had been working with childcare providers to ensure good nutrition and physical activities to benefit children’s longitudinal health outcomes. They learned that the Texas health department created a new regulatory unit responsible for identifying unlicensed childcare providers. Llanes Pulido said the majority of childcare providers in the neighborhoods GAVA serves are unlicensed, and the regulation was perceived as a potential threat to the childcare ecosystem. She said that while the focus should be on making environments as healthy as possible, energy is required to protect childcare environments from being closed down and to plan for the disruption of childcare centers. She suggested that systems-level conversations be used to recalibrate funding models to reduce harm and address changing needs.

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Community Health Metrics

A participant noted that not everything that counts is countable, and not everything that is countable counts. Singhal added that there is tremendous power in the determination of what is counted, and that with deep listening, that power can come from the community. Llanes Pulido remarked that GAVA is in the middle of creating a community-driven evaluation framework. The organization’s initial 5 years as a place-based childhood obesity intervention endowed them with a set of 5-year longitudinal public health studies conducted by the University of Texas Health Science Center. The studies measured accessibility of healthy food and physical activity, utilization of community assets, health behaviors, and community readiness to address barriers to those resources. Llanes Pulido said that, while health behaviors improved and body mass index stabilized in adults with high exposure to GAVA’s efforts, troubling evidence emerged regarding the child body mass index readings being measured. It also became clear that there were omitted variables. For example, during the research period there was an increase in economic stressors and two catastrophic floods that impacted the area, yet these were not addressed or evaluated in the study.

To account for a broader range of variables, GAVA is developing a community-driven set of evaluation indicators around health, demographics, and the environment. Working with colleagues at the Lyndon B. Johnson School of Public Affairs at The University of Texas, GAVA is determining how survey data on those areas can be collected, both through randomized samples and from the people who live in the communities GAVA serves with various levels of exposure to GAVA’s community-based efforts. These data will then be used for multiple regression analysis to identify relationships among these interconnected variables. Carrillo added that the community is best equipped to determine the problems to address and goals to set; therefore, a community-driven approach is needed in determining metrics and learning focus areas. Furthermore, community input should be used to identify factors contributing to a desired outcome that is not yet being achieved as well as the changes required to arrive at a desired outcome. She described this process as continually evolving (it is an iterative process that deepens with relationship and trust over time).

Direction of Power

A participant noted that the U.S. federal government’s response to the COVID-19 pandemic is often characterized as being insufficient, ineffective, or inconsistent, which suggests that a stronger top-down approach is

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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needed. Singhal asked if the reverse might be true—that the problem lies in communities being neither adequately resourced nor trusted to develop their own responses to the pandemic. Carrillo said this is not an either/or situation, but rather a both/and situation. The needed change requires everyone to step into the power they have, and one cannot deny that the federal government has power. Power and responsibility exist at all levels, from grassroots communities to the federal government. She said that the focus should be placed on leveraging power at each level and working together across levels.

Llanes Pulido commented on assumptions that neighborhood stability and social cohesion support people’s health and their ability to withstand disaster. GAVA wants to further explore and challenge those assumptions. For instance, it is examining how the racial background of people living in the same zip code affects the perceptions of safety in regard to police interactions. This example represents a number of varying factors at the intersection of healthy food, physical activity, and neighborhood stability. An understanding that the people who experience effects are key to creating solutions has developed in the field of health equity, said Llanes Pulido. Allowing communities to lead conversations enables them to identify the underlying problems that organizations should be focusing on.

Notable Community Features

Gunderson suggested that as community organizers, the panelists are likely to be less focused on the quantitative measurements of indicators than on a systematic observation of factors. He asked the panelists what factors they pay attention to when visiting a community. Petit replied that she is interested in experiencing different neighborhoods and noticing who lives in them and what types of jobs they have. While giving some visiting sociologists a tour of Long Beach, she took them to the wealthy neighborhood of Naples in order to compare the 2.65 percent unemployment rate of that community to the 19 percent joblessness rate in central Long Beach. When people advise others to live in certain parts of town versus others, there is a story behind that, said Petit. She is interested in the story of what a neighborhood feels like, the history behind why groups of people live there, and why there are dividing lines between parts of town. Petit added that environmental health collaboratives have organized “toxic tours” that highlight the environmental and health problems created by the pollution from Long Beach’s large shipping port, oil refineries, and other aspects of the built environment.

Carrillo remarked that a tour of her community in northern California would involve both a bus and a boat. She would take visitors by bus

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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to different community centers, garden spaces, and other places where people have created growth in vitality. The tour would also include neighborhoods affected by disinvestment to compare these to the possibilities seen in the growth communities. Next, there would be a 45-minute boat trip up the Klamath River to visit the Upper Yurok Reservation. While a state highway connects to the reservation, there are sections that are still a one-lane road along a cliff. She noted that the school received access to electricity via a generator only 2 years ago. The level of disconnection and disinvestment from institutions is readily apparent in this area, said Carrillo. This is powerful, juxtaposed to the richness and vitality of the people, community, and natural landscape of the region.

Singhal said he would take visitors to the parking lot of the Walmart in El Paso where 22 people were killed in the shooting that took place on August 3, 2019. A Grand Candela (grand candle) Memorial has been erected at the site. Made up of 22 arcs to symbolize the victims who lost their lives, the structure emits light that traverses across the U.S.-Mexico border and is visible to all.

Power-Building Imagery

Gunderson recounted a visit to a group within the Cesar Chavez ecology of organizations. Chicanos Por La Causa is a community-based organization in Phoenix, Arizona, that began with union organizing efforts around outlawing the short-handled hoe. Farm workers organized to ban this tool that required the user to bend over, leading to chronic back pain and long-term health issues. The image of the short-handled hoe serves as a powerful reminder of the difficult circumstances previous generations of organizers have faced and puts current challenges in perspective, said Gunderson. He asked the panelists about images that symbolize the uphill battles that those who came before them have faced.

Llanes Pulido is a second-generation organizer who grew up during the galvanizing phase of the environmental justice movement. In 1992, low-income communities of color with a budget of approximately $2,000 were able to successfully organize efforts resulting in six transnational oil companies vacating a fuel storage facility in East Austin. She said that the struggle involved in this successful effort gives her a sense of solidarity with Nigerian activists protesting Shell Oil. Llanes Pulido repeatedly reminds herself that her work in politics and organizing is made possible by the elders and ancestors who blazed a trail before her.

Carrillo shared a drawing created in 2009 to represent a vision of opportunities for young people to have meaningful work and connection to community. It featured a girl wearing a t-shirt that says, “I love this place because I can make it great.” In one hand, she holds a toolbox

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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containing research, writing, policy, advocacy, media, and public speaking. In her other hand, she holds a plan that includes education, a healthy lifestyle, economic security, hopes and dreams, and a community where she can find a job she loves and a healthy place to raise a family. Carrillo noted that when this drawing was created, it seemed an impossible dream. However, 12 years later, she is working with young people who are the embodiment of this vision. For example, a transgender youth hosted a county commissioner town hall and created a radio program about racial equity with the mayor in a rural, conservative community. In addition, a 22-year-old is serving on the city council. Carrillo grew up hearing that success necessitated leaving the community, but now young people have hopes and dreams within the community.

Petit held up a large paper circle with a heart on one side and an angry face emoji on the other. About 10 years ago, she and other activists were watching the mayor’s annual State of the City address with frustration that much of what he said undercut the work they were doing. They decided to create a People’s State of the City forum for presenting information to the community that politicians omit. This annual event now attracts as many as 500 attendees from the community. Participants are given the circles as a tool to express how they feel about the information that is presented. She said the two-sided circle represents her community’s ability to definite its own narrative and priorities.

Sostaita said his dream is always to bring the community together. Regardless of whether people are members of his church, he views all neighbors as his community. He noted that many young people feel lost and unsure of what to do. His church works to bring families and individuals together into community, a place where people can experience the power of education, health, hope, and healing.

Ferdinand held up a photograph of her father and uncle standing in front of the house they grew up in. She described the house as a place she loved, charming with its cobblestone driveway and rose bushes. The neighborhood was devastated by the floods of Hurricane Katrina, and the house is no longer there. The current condition of the neighborhood, with more vacant lots than homes, is difficult to reconcile with the lovely image in the photo, said Ferdinand. In spite of that, seeing the photo and remembering how much love her father and uncle had for their childhood home gives her hope in working to create a stronger community. She also presented a photo of Wetland Park, which is across the street from the neighborhood where her father spent his childhood. The park features beautiful water and wildlife, and children play there. In spite of its proximity to homes, alligators, coyotes, rabbits, and other animals and plants are flourishing there. Ferdinand said the creation of a space that

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
×

simultaneously holds memories of ancestors and provides children with a place to explore, enjoy nature, and be free gives her hope.

Gunderson showed a painting that depicts a sun shining over places of worship from various religions. He stated that people come to worship in order to humble themselves before what they understand to be the ultimate power, and they leave places of worship ready to give of themselves in creating the future. The painting also depicts science, a field that continually provides new tools to use in imagining possibilities for our communities. Thus, this painting is a picture of power for him.

Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
×

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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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Suggested Citation:"6 Community-Led Transformational Narratives." National Academies of Sciences, Engineering, and Medicine. 2022. Community Power in Population Health Improvement: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26306.
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To explore issues related to community-driven power-building efforts to improve population health, the Roundtable on Population Health Improvement of the National Academies of Sciences, Engineering, and Medicine hosted a virtual public workshop, "Community Power in Population Health Improvement", on January 28 and 29, 2021. Participants discussed the different components and dimensions of community-led action around different population health improvement topics such as education, transportation, environmental health, healthy eating, and active living, among others. This Proceedings of a Workshop summarizes the presentations and discussion of the workshop.

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