'Demand The Impossible': How Lived Experience Leaders Make Systems And Policy Better

(MENAFN- The Conversation) There's a growing awareness policy works best when shaped by the people and communities who have lived through the issues it aims to address.

If we don't listen to and learn from those who have experienced issues such as homelessness, family violence, distress or trauma, we risk building systems that misunderstand the harm and the hope within those realities.

Across social and public sectors, new roles are being created for people with what is often called“lived expertise”.

These are people whose personal experience informs work to improve policy, practice and research. They are advising government departments, helping to design services, informing inquiries and guiding community initiatives.

But while lived experience is often invited into the room, we still know little about what it is like to work from that experience across distinct issue areas – and about the emotional toll, risks and challenges of trying to make change inside systems that actively resist it.

To explore this further, we spoke with ten lived experience leaders as part of our research, released today.

Deep commitment

The lived experience leaders we spoke with work alongside a range of communities – for example, First Nations peoples, incarcerated women and girls, those experiencing mental distress, young people, people from LGBTIQA+ communities and those impacted by family violence.

Our research revealed that these lived experience leaders are deeply committed to structural change. They carry hard-won knowledge and a strong determination to ensure others have better experiences.

One told us:

Another said:

Influencing from the inside and outside

These leaders work across, between and beyond institutions – sometimes from the inside to influence change, other times building power outside them.

As one leader said:

Moving between these spaces is not easy.

Another leader said:

Leaders are often drawing on collective experience, not just their own, and feel deep accountability to others, particularly those who share experiences of injustice and harm.

As one said:

Their approach intentionally challenges dominant hierarchies. They lead alongside others, guided by the quality of relationships they build – and by care, accountability and connection. One person told us:

Hazards, harms and hope

Lived experience leadership can also carry risks. Many leaders spoke about being invited to contribute or“have a seat at the table” without being genuinely heard, or seeing action taken from their insights.

Participation often feels like a compliance exercise. Tokenism, they said, is still common. One person told us:

Another said:

And yet, many leaders also spoke about hope. One person told us:

Where to from here?

Our research shows lived experience leadership holds real potential to address the complex problems traditional approaches struggle to solve.

But this potential can only be fully realised when institutions recognise their own capacity to cause harm and begin to share power with those most affected.

Real progress means more than inviting lived experience into rooms or at tables – it means taking responsibility, acting on what's heard and being changed by it.

As one leader urged:

Lived experience leadership isn't about earning a seat at someone else's table.

It's about questioning who built the table in the first place – and creating new spaces where power, decision-making and design are genuinely shared.

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