A landmark report is calling on institutions to better recognise, resource and sustain Lived Experience Leadership. Convened by Morgan Cataldo in partnership with RMIT University and collaborators Robyn Martin, Perrie Ballantyne, Suzi Hayes and Kelsey Dole, the On Our Own Terms project brings new visibility to the hidden costs borne by leaders in this space.
The first phase of the project, funded by the Paul Ramsay Foundation, highlights that leaders grounded in lived and living experience of adversity, marginalisation and systemic harm are driving social change at significant personal cost - and that current institutional approaches do not adequately recognise, resource and sustain their leadership.
On Our Own Terms: Systems Change through Lived Experience Leadership presents findings from in-depth conversations with ten Lived Experience leaders working across health, social services, advocacy and community settings in Australia. The report represents the first phase of a broader project examining how leadership grounded in lived expertise is reshaping and challenging social systems.
Photo: Fellipe Ditadi Transformative ambition, hidden toll
The leaders who participated in the study draw from diverse communities and standpoints, including experiences shaped by family and gender-based violence, mental ill-health, homelessness, incarceration, racial discrimination and LGBTIQA+ stigma. Without exception, they described a clear and uncompromising commitment to systemic change.
Alongside that ambition, the report describes a 'lived experience tax' - the sustained emotional, psychological and financial toll borne by leaders who repeatedly share their experiences in institutional settings, absorb harm on behalf of their communities, and navigate systems that have often caused them harm in the first place.
As Lived Experience practitioners, we hold one shield fending off the system, another fending off the organisations we have to work with, and then another defending the people we represent - and then we don't have anything left for ourselves," one leader told researchers.
Facing the scale of the challenge
Project Convenor Morgan Cataldo said the findings point to a fundamental gap between how institutions talk about Lived Experience and how they engage with the leadership it embodies.
"These are not peripheral voices being invited in for symbolic consultation," Cataldo said. "These are leaders with deep expertise, political clarity and a genuine vision for systemic transformation. And yet institutions routinely fail to compensate them fairly, acknowledge the harm they experience, or stay the course when the work gets uncomfortable - and are often unwilling to be shaped or changed by the leadership they seek to engage."
The report suggests institutions rarely apologise for the harm they cause to Lived Experience leaders, even when that harm is direct and documented. It calls for restorative approaches and genuine acceptance of responsibility, backed by concrete action and long-term commitment.
Photo: Spencer Plouzek A movement, not a trend
The report also pushes back against a growing tendency to co-opt or dilute Lived Experience, stripping the term of its political and collective roots and reducing it to personal testimony. In doing so, institutions risk absorbing it into frameworks that limit its transformative potential.
Professor Robyn Martin, Associate Dean, Social Work & Human Services in RMIT's School of Global, Urban and Social Studies (GUSS), who co-led the research, said the study made clear that Lived Experience Leadership is a social movement with radical ambition, not a workforce category.
"These leaders are building coalitions, imagining entirely new systems and refusing to let their communities' struggles be reduced to input on a consultation panel. We need to catch up to what they're already doing," Martin said.
The report calls for dedicated investment in community-led infrastructure - including forums, networks and resourcing - to connect Lived Experience leaders with one another and sustain their wellbeing and collective power. It also challenges universities, government agencies and social sector organisations to resource radical imagination, slow down reform timelines, and follow the lead of communities rather than directing it.
A second phase of the On Our Own Terms project is planned, pending funding, which will engage a broader group of leaders - including a dedicated cohort of First Nations Lived Experience leaders - to deepen and test the report's findings in ways that honour distinct knowledge systems and leadership.
The report is now available here.
The first phase of the On Our Own Terms project was made possible through the support of the Paul Ramsay Foundation.
The project was also supported by the RMIT Social Change Platform.
