Modos

How compensating lived experience helps organizations shift power, build trust, and design systems around real human need.

Organizations often say they want to be community-centered, equity-centered, or end-user-centered. The real test is whether the collected feedback or input changes the room, environment, community, and/or ecosystem.

Do they help shape the questions?
Do they influence the strategy?
Do they define what success looks like?
Are they compensated for the expertise they bring?

Too often, systems ask people to share their stories without shifting power, changing decisions, or valuing their time. Would a consultant provide key content, recommendations, or lessons learned for free or a gift card and a meal? The answer is no, yet organizations often exploit community members with lived experience by expecting them to take the bare minimum for their time.

If we want better systems, we need better ways to understand the people those systems are meant to serve. That means moving beyond symbolic participation and building structures that recognize lived experience as expertise.

That is where power, pay, and participation come together.

Compensation Is an Equity Practice

Paying people with lived experience is not simply a gesture of appreciation. It is a way to shift power.

Community members bring knowledge that institutions often cannot access on their own. They understand where systems create friction, where services fall short, and how policies are experienced in real life. Their insight can reveal the gap between what an organization intends and what people actually experience.

But when that contribution is unpaid, the imbalance remains. Professionals are paid to listen, while community members are expected to give their time, stories, and emotional labor for free.

Compensation changes the relationship. It communicates that lived experience is not charity, testimony, or a favor. It is knowledge. It is labor. It is expertise.

Start With the Need

Many organizations design from the inside out. We start with our programs, departments, funding requirements, and internal processes. Then we ask people to navigate what we have already built.

But people do not experience systems as org charts. They experience them as journeys.

Sometimes that journey is clear and linear. More often, it is messy. It is shaped by trust, timing, access, trauma, relationships, language, and history. That is why it helps to distinguish between the journey, the experience, and the system.

The journey shows the steps people move through.
The experience reveals what those steps feel like.
The system exposes the larger structures shaping what happens.

But none of those should sit at the center. The need should.

When organizations center the need, they stop asking only, “How do we improve our program?” and begin asking, “What is the person actually trying to access, solve, build, heal, or change?”

That shift opens the door to more human-centered design and more honest systems change.

From Frameworks to Practice

The NEED Framework — Navigating Experience, Engagement & Design — helps organizations stay grounded in the end user’s perspective while examining the journey, the experience, and the system. It keeps the underlying need at the center and helps teams choose the right tools before jumping to solutions.

This matters because organizations are often pulled by their own gravitational force. We become attached to our models, language, programs, and assumptions. We can be so close to our own work that we lose sight of what people actually need from us.

A useful framework creates enough distance to ask better questions:

What are we trying to understand?
What outcome are we trying to achieve?
Whose perspective is missing?
What need is underneath what we are seeing?

These questions move organizations from reaction to reflection — and from reflection to better design.

Lived Experience Deepens Expertise

Lived experience does not replace technical expertise. It deepens it.

In the presentation that inspired this piece, I shared the story of Christopher Mark, a former coal miner who later became a leader in mine safety. Having worked underground and nearly been killed by falling rocks, he understood the danger of roof collapses not only as an engineering problem, but as a human one. His lived experience gave urgency and context to his technical work.

That same principle applies across education, housing, workforce development, public health, philanthropy, and community systems change. People closest to an issue often see dimensions of the problem that institutions miss.

The work is not simply to collect their stories. The work is to understand what those stories reveal about the system — and then change the system accordingly.

Embedding Lived Experience

Good intentions are not enough. Organizations need structures that help lived experience shape decisions, strategy, implementation, and measurement.

The LIVED Framework offers one way to do that across five dimensions: Leadership & Culture, Insights & Innovation, Voices & Vision, Execution & Experience, and Design for Impact. Together, these dimensions help organizations move from episodic engagement to embedded practice.

The Embed Framework then asks where lived experience shows up across the organization: in experience and execution, data and technology, strategy, and culture and leadership. It pushes leaders to examine whether community voice is truly shaping how the organization operates, or whether it is being treated as an add-on.

The goal is not to create one perfect model. The goal is to build the habit of asking: Where are we centering lived experience now? Where are we only collecting input? Where does power need to shift?

Participation Without Power Is Not Enough

Many organizations have participation structures: advisory councils, listening sessions, surveys, interviews, and committees. These tools can be useful. But participation without power has limits.

If people can speak but not shape decisions, participation becomes performative. If they are asked to advise but not compensated, participation becomes inequitable. If their stories are used to validate strategies they did not help create, participation becomes extraction.

Real participation requires influence.

That means compensating people fairly, designing accessible engagement structures, being clear about what is open to change, and showing how community input shaped the final decision.

Trust grows when people can see the connection between their participation and what happens next.

The Work Ahead

Systems change is not only about improving programs or outcomes. It is about changing relationships — between institutions and communities, between expertise and experience, between data and story, and between those with formal authority and those with lived knowledge.

Power, pay, and participation are connected.

Power asks: Who gets to decide?
Pay asks: Whose expertise is valued?
Participation asks: Who shapes the work?

When organizations take those questions seriously, they listen differently. They design differently. They measure differently. They lead differently.

And most importantly, they become more accountable to the people they exist to serve.

Lived experience is not an accessory to systems change. It is one of the ways systems learn how to change.