By Yolanda Roary, Shemekka Ebony, Keylynne Matos-Cunningham, Somava Saha
In her TED talk, “The Power of a Single Story,” Chimamanda Ngozi Adichie says:
“It is impossible to talk about the single story without talking about power. How [stories] are told, who tells them, when they are told, how many stories are told, are really dependent on power. Power is the ability not just to tell the story of another person, but to make it the definitive story of that person. The Palestinian poet Marie Bagouti writes that if you want to dispossess a people, the simplest way to do that is to tell their story.”
In our civic life and in our community transformation processes, we are often fraught with single stories. These stories are often grounded in stereotypes we unconsciously or consciously perpetuate of those who are poor as those who are “needy/vulnerable”—and therefore need us to save them—without an understanding of the strength, resilience, assets and resourcefulness community residents can offer.
Lived experience is defined as expertise that doesn’t come from training or formal education but rather from personal experience with an issue or challenge. People with lived experience of inequities (PLE) know a system, process, or issue from the perspective of those affected by or trying to engage with it. Because they have experienced the issue in depth, they can often identify solutions others might not. They also know what is not likely to work or what might be modified to give improvement a better chance. They often, especially collectively, are knowledgeable about what resources (formal or informal) may be available to advance desired changes. Lived experience is a way of knowing that offers core and different insights into any major policy or community improvement process.
Often, those on an equity journey integrate one person with lived experiences of inequities in a room full of people with professional backgrounds and experiences. This can lead to tokenism (where the group feels better to have included someone at a surface level, but the absence of a shift in power dynamics or a process which integrates key ideas leads to persistent marginalization of both the person and their ideas) or idealization (where it is assumed that that one person's experience represents that of a whole group). It can at worst lead to toxic inclusion, which can be harmful for the person who has to bear the responsibility of representing a whole group (which they cannot do). It rarely leads to the kind of relationship that is needed for honest multi-directional feedback to emerge. It does not create space for people to all place their pieces of the puzzle on the table.
Adichie goes on to say, “The single story creates stereotypes, and the problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story...the consequence of the single story is this, it robs people of dignity. It makes the recognition of our equal humanity difficult. Stories matter. Many stories matter. Stories have been used to dispossess and to malign, but stories can also be used to empower and to humanize. Stories can break the dignity of a people, but stories can also repair that broken dignity.”
A commitment to intentionally integrating lived experience into our community and civic change processes through a diversity of voices and stories can help to address this by bringing multiple stories into the room and helping us to be in relationship with the people behind the stories. This includes both the stories and insights carried by community residents as well as the stories of system stewards who themselves bring a rich body of insight from their own lives and work. Together, they can see the whole picture.
Investing in proximity, storytelling, and relationship-building
Often groups seeking to integrate people with lived experience into their processes jump straight to inviting community residents to their tables without changing anything about whose table they are sitting at, how the table is set and by whom, how others around the table are prepared to integrate that lived experience, how multiple stories can emerge (including their own stories), or how the process is structured to value and integrate both lived experience and other forms of knowing together. A process of engagement that builds trust, led by community champions who already have trust within the community can help to offset this and build a pathway for engagement. This kind of pathway is possible to build—and perhaps especially important to build—in the context of policy change.
Case Study: Building a national policy agenda together
As part of developing a database for an Equitable Economy Policy agenda for the Well Being In the Nation Network, WE in the World decided to engage in a process of community storytelling and dialogue, hosted by community residents with lived experience of economic inequity. WE in the World had already conducted a thorough landscape of existing recommendations written by leading organizations centering equity around the nation. The intention to include Persons with Lived Experience was to ensure that the policy agenda and database included perspectives from the lives and stories of people from diverse socioeconomic statuses, race, ethnicities, regions, and generations.
From the beginning, community residents with lived experience of economic inequities, as well as organizations who held constituency with these communities, were engaged in the design and stewardship process guiding the effort. Dialogue guides with open-ended questions that serve as a loose guide were created by lived experience leaders, together with Community Initiatives and the Local Voices Network, bringing together skills in facilitation and common sense experience.
Dialogue hosts were recruited who held trust within their community. They participated in Local Voices Network Facilitator training to ensure skills in motivational interviewing, open dialogue, facilitation and use of the Hearth technology to directly uplift the voices of the unheard. Dialogue hosts recruit six to eight participants who have experienced economic hardship for their dialogue (over 60 diverse voices and stories across the nation). Both hosts and participants are paid an honorarium for the time and expertise. Participants are asked to give their consent to having their voice recorded and to be true to their story and experience. The intent is to understand these multiple stories—some of strength and resilience, some of insight about how the system fails, and some that reflect opportunities to shift policies and systems.
Once the dialogues are complete, a team including PLE is engaging in a systematic process to review each transcript and highlight quotes in the words of residents which are then mapped to impact areas and policies in the policy agenda. Dialogue hosts will have the opportunity to review these and add further input. The voices of community residents themselves—the clips mentioned above—are added to the policy database created for this effort that will be publicly available through Community Commons.
Gaps between strategies identified based on community residents’ dialogues will lead to additions to the 130+ policies that are present in the Equitable Economy policy database, especially if they emerge from multiple dialogues. Participating dialogue hosts and community residents who experience economic hardship will have the opportunity to vote directly as part of a Delphi process alongside policy makers and organizational leaders from around the nation. A diverse Stewardship group, which includes PLE members (including dialogue hosts) as well as organizational and policy leaders in the field, oversees the entire effort. These leaders are working together to get to know one another, share their experiences with one another, to develop a shared vision and approach, to learn how to lead together.
Having strong relationships with people with lived experience creates champions who will make sure that co-designed change ideas are well-received in the community. If people with lived experience co-design and co-lead improvement initiatives, they can help make sure that ideas the team put a lot of time and effort into are not rejected by the community. Focusing on relationship building further expands social networks, ultimately increasing the community’s ability to reach more people. It even leads to further cross-engagement in areas of mutual interest.
Reflections and lessons learned
1. Relationship is at the core
Integrating lived experience with other kinds of experience requires relationship building and an appreciation of each other’s shared gifts and assets. People’s natural gifts and contributions merge and an appreciation of these contributions develops. The relationships form at a level of trust that allows for greater listening and understanding. Early-stage connections create space to build familiarity, commitment, and trust, and to introduce activities toward stronger intentional relationship building. Relationship building is the nurturing of ongoing relationships from the initial collaboration meeting and beyond.
The trust and honesty needed to create this space increases insight into areas where both individuals and teams need to be authentically dedicated to community improvement and equity work. If an atmosphere of safety is established in the relationship-building stages, then the group will find ways to challenge each other when needed, for example, to decrease implicit biases and deepen its own commitment to the work. Increased attention to pre-relationship and relationship building pays off in the long-term with benefits such as less attrition in participation, meeting agreed-upon goals, establishing buy-in, and promoting advocacy when it comes time to implement change. When relationship building is prioritized, the gains in community and quality far outweigh the challenges of creating a product that everyone is invested in.
2. Growing together
Inviting PLE to the table must be a thoughtful and strategic process. PLE have suffered from some type of inequity, trauma, or prejudice and some may still be in the healing process. Implementing a fair process, inclusive of their voice and agency, without power dynamics is imperative. Many PLE are overcoming self-limiting beliefs and, if it’s not done well, a process that simply extracts their experience without offering support, healing and change can create stigma, mistrust, and faulty relationships. However, when you authentically and meaningfully engage their life, story, trauma, voice, and inequity, you empower and invite value and abundance.
Integrating lived experience is not about valuing only lived experience or a false deference to those who experience inequities. It is about having the skills and assets together to see and know the whole picture, to hear many stories and share our own. Fundamentally, it is about being in relationship, about repairing our civic body, about trusting and knowing that we need one another to see the whole and to be whole in order to have the many stories and experiences needed to see the whole picture. It is not an extractive process that draws out people’s trauma and their experiences for the gain of another group. It is a process of coming together for mutual healing. In the words of Prabhjot Singh,
“What is a way to say, in public discourse, “I love you and we can do this.”
Or, “We honor where you’ve been, and it’s an honor to be here with you.”
Or, “Tell us about the pain you feel, so we can find in ourselves the places it touches.”
Or, “Is there a way I can lift you up, where I too am uplifted by you?”
Or, “We can hold, and uphold each other, so long as we resolve to do so with integrity.”
Perhaps it's enough that we can do this with ourselves, and the people immediately around us.
Somava Saha, MD MS is a Baha'i who has spent over 25 years working to grow thriving people and communities in some of the "poorest" places in the world. She serves as the Founder and Executive Lead of Well-being and Equity (WE) in the World and Executive Lead of the Well Being In the Nation (WIN) Network.
Shemekka Ebony is Community Engagement & Equity Strategist, Co-Founder of IAmBrilliant.org and PLELeaders.org.
Yolanda Roary is the Founder of Total Grace Consulting and Co-Founder of PLE Leaders. She is the lead author of Engaging People with Lived Experience of Inequity: Relationship Building.
Keylynne Matos-Cunningham is a Project Manager at Well-Being and Equity in the World.
1 Roary, Y., Rumala, B.B., Coleman, S.E., Knuckles, D., Turk, A., Glaze, E., Canedy C., FallCreek, S. Engaging People with Lived Experience of Inequity: Relationship Building. Implementation Guide. Cambridge, Massachusetts: Institute for Healthcare Improvement; 2019.
2 Rumala, B.B., Coleman, S.E., Roary, Y., Canedy C., Turk, A., Knuckles, D., Glaze, E., FallCreek, S. Engaging People with Lived Experience: Pre-relationship to Relationship Building Assessment Tool and Resource Guide. Cambridge, Massachusetts: Institute for Healthcare Improvement; 2019.
3 Well Being In the Nation Network Equitable Economies Cooperative - https://winnetwork.org/ Last accessed 12/18/20
4 Well Being and Equity (WE) in the World Frameworks - https://winnetwork.org/win-framework-for-action Last accessed 12/18/20
5 Local Voices Network, Well Being In the Nation Medley - https://www.youtube.com/watch?v=TM7jalX-HjQ&feature=youtu.be Last accessed 12/18/20