Lived Experience is Expertise: How Engaging Community Members Builds Better Collaboratives – Diane Sullivan
By Miriam Castro, Program Manager and edited by Susan Martinez, Program Associate, Data Across Sectors for Health
Diane Sullivan’s presentation at the All In National Meeting was an honest, level-setting gut check about the unintended consequences of how we engage with communities and people with lived experience. Diane Sullivan is a mother, a grandmother, and an activist with lived experience in poverty, homelessness, and hunger. Throughout her presentation, Lived Experience is Expertise: How Engaging Community Members Builds Better Collaboratives, Diane shared examples, stories from her own engagement work as both an activist and someone asked to participate in community engagement tactics that can help us better engage people–community experts–with lived experience in our work. As All In Members, public health practitioners, community organizations, and groups working in multi-sector collaboration and data sharing, she continues to learn how to engage people with lived experience authentically, her insights have brought a lot of clarity. Here are my high-level insights from her presentation and some great quotes that I hope you find as inspiring as I did:
1.Understand that this work is traumatic.
A word that Diane frequently used throughout her presentation was “Traumatic.” It can be a traumatic experience for people with lived experience to rehash their (already traumatic) stories to people who are not authentically engaging with them. Diane suggests working with people like herself, who can help ensure that processes and procedures don’t traumatize people and use appropriate language when crafting documents, website language, or registration forms.
2. Acknowledge people with lived experience as experts. And pay them.
Sometimes we refer to community members’ input as volunteer time, but Diane reminds us that “volunteers” are putting in technical, real work, and they should be appropriately compensated. “Nobody should be expected to show up and not be paid. You wouldn’t show up for your job and not be paid.”
Diane’s story about her work on a Food Access Gaps focus group in Boston, where community members and people with lived experience were asked to share their stories, resonated with me. Diane learned that community members were being paid 1/6th less than the people hired to administer the survey, which she found unjust (and is!).
“Those who sacrificed so much by sometimes being asked to share their most traumatic experiences in their lives and their intellectual property with complete strangers were paid one-sixth less than the people who were being asked to collect and store this data. [If] we value data so much, then can some please help me understand why do we fail to extend the same grace to those who provide this data we all hold so dear?”
Diane pushed back and called attention to this glaring inequity in hopes of holding the space for a moment of self-reflection. Listen to her epic response at 13:30 where she asks, “what is the overhead and the value of trauma and when does that come due and can we get that retroactively adjusted for inflation?”
3. Make time for equity and include community experts at the onset.
Diane’s following piece of advice ties nicely with the next point on building relationships: “So often we’re in a rush to meet deadlines and get reports out, whatever is demanding our time, and it’s easy to let go of equity. Equity takes time, resource, but you need this to connect with your community in a meaningful way.”
This advice is not new to All In. Sharon Arline-Bradley, Founding Principal of R.E.A.C.H Beyond Solutions, LLC and our instructor for the All In For A Shared Racial Equity Vision Training, said, “…Often, we get into our practice, space, tenure, and leadership, and we forget that the community we say we’re a part of brings assets to the table that many of us do not have. We can’t do the work collectively if we don’t start out with that support and humility.”
Making time for equity also means taking the time to thoroughly and authentically engage community experts in decision making. Diane said, “Don’t be an already-in-motion-can’t-derail-well-intended-train. Don’t set the agenda, and then invite the community to show up and squeeze us into your comfortable and convenience pre-built-comfortable-for-you-box. And don’t play ally while hearing your agenda in the echoes of our words. That’s not transparent, not equitable, indeed what that is, is manipulation and that’s exploitation.”
4. Build genuine relations with people.
Diane asks us to think about how people show up to the work that we involve them in. And are they giving us what we want to hear because of a gift card? Probably. When we build genuine relationships, that will show up in the work more so than any gift card. How we set up space and how we structure compensation is all part of this.
5. Be brave! Push back. Create spaces for self-reflection in the groups you organize and the groups you are a part of.
When I listened to Diane’s presentation I looked back on my professional experience, and I realized that I had made similar mistakes in my community engagement career. And as a Latinx woman of color, I, too, have had my own traumatic experiences. I’m grateful to Diane for her inspiring presentation, which can help us be better at our work and all the areas and ways we show up.
Diane stated that she welcomes the opportunity to have these types of conversations with people who feel differently. I admire Diane’s bravery and am encouraged to lead by example when she said, “I don’t want to be calling folks out any more than they want to be called out. And as easy as it is for me to make people uncomfortable, honestly it’s traumatizing me and others like me, over and over again.” She also encouraged us to have honest conversations, strive for openness and transparency, and look for ways to hold personal reflection spaces.
Some action steps you can take:
- Create more seats at the table and share power.
- Break down barriers and perceptions based on white supremacy and acknowledge that we are holding these systems up.
- Ask yourself the following questions: why are you here? Why do you do this work? Is this just a career? Are you doing it for the paycheck, or you want to make a change?”
Some excellent breakout sessions that exemplify Diane’s presentation and showcase community voice and leadership include the following:
- CHIP: Putting Communities in the Driver’s Seat (Recording / Slides) with Karen Nikolai (Hennepin County Community Health Improvement Partnership) and Idil Farah (Hennepin County Community Member)
- From Engagement to Co-Disruptors: Community-Anchored Processes to Drive Health Initiatives (Recording / Slides) with Lauren Pennachio (Health Leads), Jo Bruno (Delta Peers)
- Amplifying Community Voice in Population Health Initiatives (Recording / Slides) with Bilal Taylor (Nemours), Nancy Hamson (Yale-New Haven Health), Allison Logan, and Millie Seguinot (Bridgeport Prospers)
Moving Forward for Truth & Equity- Liz Dozier
By Esther Babawande, Communications Assistant at Data Across Sectors for Health
“ COVID-19 has been our report card on racial equity, and we have failed.”
As Liz Dozier presented her assessments of the current state of data and race at the Fourth Annual All In Data for Community Health National Meeting, those striking words resounded through the interface.
Long before she spoke at the virtual public health data conference, Liz Dozier was known for taking a “public health approach” to address the violence prevalent in what used to be the nation’s poster child for a violent urban school. The year Dozier became principal of Fenger High school, located on Chicago’s Southside, 200 students were arrested. As a principal in a school others had forsaken, Dozier overhauled the accepted system of doing things with courage. Three years later, fewer than a dozen students faced the same fate as the initial 200.
When Dozier presented 300 data scientists with a report card for the nation based on racial equity, we all saw fierce Principal Dozier again. Like many parents she visited, personally, audience members felt the same need to do something about this country’s failure.
The first step in eradicating these inequities starts with evaluating power and the misconceptions of the powerless. In a world where knowledge is power, it’s easy to believe those with the data have all the answers. Dozier challenges that notion entirely. She boldly shared examples that illustrated that those with power don’t always have the answers. Echoing the sentiment of fellow keynote speaker Diane Sullivan, Dozier shone a spotlight on persons with lived experience’s ability.
She pushed folks to see how persons with lived experience give figures a face, a story, a meaning. Instead of infantilizing those with lived experience, we must accept that they alone have the perspective to make sense of their situation. To tap into the wealth of that perspective, Dozier advises leaders to ask the right questions.
Years ago, at Fenger high school, Dozier shared how she employed the discipline of never asking students that were behaving violently and in opposition, “what’s wrong with you?” Instead, she started asking, “what happened to you.” For her, in doing so, she got to understand the sources of behavior. She found that once the question shifted, the solution changes.
Shifting school systems and thought processes with the right questions is how Dozier leads, and in doing so, she lifts others to do the same. Her purpose: uprooting and changing the philanthropic space. As the founder and CEO of Chicago Beyond, Dozier and her team have invested more than $30 million in community-led initiatives and individuals fighting for all youth to achieve their fullest human potential in Chicago and beyond. Dozier showcases the importance of funders trust’ in nonprofit visions. Where others see ‘risk’ in funding Black and brown leaders and work in black communities, Chicago Beyond realizes that the communities have the power. They get to choose, and we as funders must take risks to effect change truly.
Dozier concludes her speech by sharing her best practices as a funder. These significant insights include:
Seven Inequities Standing in the Way of Equitable Research
- Access: Could we be missing out on community wisdom because conversations about research are happening without community members being meaningfully present at the table?
- Information: Can we effectively partner to get to the full truth if information about research options, methods, inputs, costs, benefits, and risks are not shared?
- Validity: Could we be accepting partial truths as the full picture because we are not valuing community organizations and community members as valid experts?
- Ownership: Are we getting incomplete answers by valuing research processes that take from, rather than build up, community ownership?
- Value: What value is generated, for whom, and at what cost?
- Accountability: Are we holding funders and researchers accountable if research designs create harm or do not work?
- Authorship: Whose voice is shaping the narrative, and is the community fully represented?
Source: Chicago Beyond Guidebook: Why Am I Always Being Researched?
These seven inequities are held in place by power and offer seven opportunities for change. There is a deep-rooted well-founded mistrust in research and being researched. By being intentional in our processes, we can change that in our generation. We can democratically collect data. For Dozier, nobody indeed loses when we give up or relegate power if the goal is equity.
To experience Liz Dozier’s complete address, watch the video here.
For a complete listing of all the recordings and handouts, visit this site: https://www.allindata.org/resources/all-in-national-meeting-2020/