What is Lived Experience?
Oxford dictionary defines lived experience as personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people.
The US Health & Human Services defines it as knowledge based on someone’s perspective, personal identities, and history, beyond their professional or educational experience.
In Braiding Sweetgrass, Robin Wall Kimmerer shares this story as both a definition of lived experience and why it matters:
“I once met a student visiting from Europe who told me excitedly about going “ricing” in Minnesota with his friend’s Ojibwe family. They were on a lake by dawn and all day long they poled through the rice beds, knocking the ripe seed into the canoe. ‘It didn’t take long to collect quite a bit,’ he reported, ‘but it’s not very efficient. At least half the rice just falls in the water and they don't seem to care if it's wasted’. As a gesture of thanks to his hosts, a traditional ricing family, he offered to design a grain capture system that could be attached to the gunwales of their canoe. He sketched it out for them, showing how his technique could get 85% more rice. His hosts listened respectfully, then said, ‘Yes, we could get more that way. But it’s got to seed itself for next year. And what we leave behind is not wasted. We’re not the only ones who like rice. Do you think the ducks would stop here if we took it all?’”
Why is Lived Experience critical in social change work?
At Just Possibilities, we are firm believers that meaningfully engaging people with lived experience is not only the right thing to do, but that it’s critical in creating impactful and innovative organizations that can evolve to solve the most complex social problems facing us today. Over the course of my career, I have personally witnessed the following transformations take place when organizations center people with lived experience:
Measurable and sustainable growth that preserves the integrity and effectiveness of programs and services. One of the first things social impact leaders and their board of directors ask in the strategic planning process is how to grow. Growth is critical to achieving our missions and attracting funding. The danger in growth, however, is that too many organizations view growth as a binary choice between quality and quantity, compromising and sacrificing the impact and effectiveness of interventions that can lead to true social change.
I recently worked with an organization that wanted to serve the academic and social emotional needs of more low-income Black and Brown students. However, they knew that simply putting more kids in a classroom for the sake of growth would compromise the fidelity and quality of their highly individualized and evidence based programs. Organizational leadership didn’t want an either/or choice, they wanted a both/and. To accomplish this, they engaged and centered students, their families, and front-line classroom staff in problem solving. Their ideas and solutions led to strategic priorities that right sized the staffing model, addressed pay equity, invested in the recruitment, retention, and development of staff, and built a recruitment pipeline that hired directly from the community served. Through embracing and integrating the wisdom of lived experience into their strategic priorities, the organization is now serving 60% more students in just two years, has an active waiting list, and spends no money on marketing and recruitment efforts due to word of mouth referrals within the community served. The organization is also attracting new funding because of their success centering community, equity, and quality programming.
Research that leads to innovative solutions while also increasing participation, building trust, and streamlining resources. Another organization I worked with wanted to improve health outcomes within a historically marginalized community. Instead of defaulting to the status quo by relying on outside "experts", the project redefined who an expert in community health can be. The project engaged and empowered community members in defining health; designing, collecting, and analyzing community health data; and developing interventions that improved health outcomes and invested directly back into the community.
While I worked on this project over ten years ago, many of the interventions are still going strong today, with several of them becoming self-sustaining and entrepreneurial endeavors. The interventions reached more people, built local leadership, and also reduced bureaucracy and operational obstacles.
The creation of impactful policies and practices that lead to successful implementation, social change, and leadership development. Another organization I worked with wanted to engage youth in policy change. When we initially shared the organization’s desired policy change with youth stakeholders, youth told us they thought the idea was “stupid”. Instead of forging ahead, we continued to convene youth around policy change ideas and solutions of value to them. Youth brought a deeper and more holistic understanding of what mattered to young people, identified obstacles and creative opportunities for implementing the policy, and became active leaders and advocates in their own right.
How to center lived experience in your organization?
Through lifting up and centering lived experience, every organization has the potential for truly transformative work. When embarking on this journey:
Build and cultivate a lived experience infrastructure. Create opportunities to integrate the wisdom of lived experience at all levels of your organization, from board and organizational leadership, to staff at each level of your organization, volunteers, and members from the communities served. If you don’t have people with lived experience at each level of your organization, find out why. Engage the community you serve to learn how they perceive your work and the honest opportunities and obstacles they see or have experienced with your organization and include this in your strategic plan priorities. This will help your organizations develop a deeper understanding of the issues and the communities you serve, allow for richer discussions and analysis, and invite new ideas and perspectives to solve complex and long-standing problems.
Treat people with lived experience as change makers and redefine who is and who can be an “expert”. Commit to moving beyond simply inviting input and invest in the ideas and solutions shared by those closest to the work. This will help you avoid tokenism, help guard against biases, and ensure that the needs and perspectives of the communities you are working with are well-understood and resourced.
Create accountability by defining the organization’s values around lived experience and include the value of lived experience in your organizational decision-making processes. Engage people with lived experience in creating a values scorecard* or decision-making rubric that provides accountability across the organization. This will allow the organization to work from a shared and transparent definition of lived experience, how it is centered within the work, and establish and uphold trust. Integrate the scorecard into all organization decision-making processes. This is a key step in partnership building as it demonstrates your organization is willing to move beyond lip service and put values into action.
Invest and nurture a lived experience culture. Take the time to listen, learn, and revise. Admit what you know, what you don’t know, and where you need help. This demonstrates an example and commitment to redefining who can be experts within your work. Reflect, both as a leader and as an organization, on the opportunities and challenges of centering and upholding a lived experience culture by building a continuous feedback and engagement loop. This will help ensure your organization moves the needle on becoming a truly transformational and inclusive culture.
Just Possibilities provides values and equity-based strategic planning, organizational assessments and recommendations, values decision making scorecards*, and leadership and change management services to organizations dedicated to the social good. You can learn more or schedule a free consultation call by visiting www.justpossibilities.com
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