Lived experience and experience experts are increasingly recognised as valuable contributors in social domains, healthcare, and justice reform. From mental health and substance use care to reintegration programmes for formerly incarcerated individuals the involvement of people with firsthand knowledge has the potential to transform policies and practices. However, drawing on lived experience must be approached with care to ensure ethical engagement, prevent exploitation, and safeguard the well-being of those who choose to share their personal stories.
My own journey: from lived experience to becoming an experience expert
As a person with lived experience, I have personally navigated the complexities of this landscape. Over the years, I was frequently invited to contribute to articles, projects, and media programmes as someone with firsthand knowledge of the justice system. Sometimes, these opportunities were beneficial, providing networking possibilities, financial support, or a sense of purpose during difficult times. However, I also encountered empty promises,offers that suggested my participation would lead to job opportunities or professional development, only for these assurances to disappear once my contribution had been secured.
There were moments when I worked extensively on projects, dedicating countless unpaid hours, only to discover that other professionals involved had received significant financial compensation. In some cases, I was assured anonymity, only to be made identifiable in publications. Such experiences underscored the importance of informed consent, fair compensation, and the need for structured pathways for people with lived experience to transition into professional roles.
I was fortunate to break free from the limitations of being seen solely as a “lived experience” contributor. Through education, skill-building, and collaboration with professionals, I evolved into a professional, a professional with lived experience, an experience expert. I founded Stichting Sileo to help others make the same transition, to ensure that people with lived experience have the opportunity to develop into professionals if they choose to, but also recognising that not everyone may wish or be able to take this path. Lived experience is a valuable perspective in itself.
The value of lived experience and experience experts
The shift from a “repair” model to a “recovery” model in social and healthcare sectors has emphasised the importance of lived experience in ensuring a deeper understanding of systemic barriers and personal resilience. Organisations such as RESCALED and Sileo advocate for embedding the voices of those affected by the justice system into reform efforts. When applied ethically, lived experience enhances policy design, strengthens reintegration programmes, and offers unique insights into the lived realities of people navigating complex social systems. The role of experience experts, in the criminal justice sector, is increasingly formalised, with structured training programmes ensuring that their insights contribute effectively and ethically to policy and practice.
The risks and exploitation of lived experience
Despite the growing appreciation for lived experience, risks remain. Too often, people with lived experience are invited to share their stories in ways that can be exploitative. NGOs, journalists, and documentary makers may approach people during vulnerable moments, requesting personal narratives without ensuring informed consent or considering the long-term effects. Many people do not immediately grasp the consequences of being publicly identified as a former incarcerated individual or someone with a troubled past, labels that can follow them indefinitely and hinder their reintegration.
Sometimes, people with lived experience are offered opportunities under false pretences leading to the belief that participating in a project, interview, or initiative will come with paid work or career opportunities, only to find out that their contributions are undervalued or unpaid. Meanwhile, professionals involved in the same projects often earn substantial fees. This creates an imbalance in which the very people whose experiences are being leveraged receive little to no compensation or professional advancement. After release, their stories and experiences are often the only resources they possess, leaving them vulnerable to further exploitation.
Another challenge is the tendency of some people to reduce themselves to their lived experience. When lived experience becomes an identity rather than a perspective, it can trap people in a cycle of self-definition that limits their growth. Instead of seeing themselves as professionals with a broad range of skills and contributions, they may be pigeonholed as “ex-detainees”. This narrow framing not only affects personal development but also reinforces societal stigmas that hinder long-term reintegration and empowerment.
Furthermore, there is a crucial distinction between those with lived experience and experience experts. While people with lived experience have valuable perspectives, expertise goes beyond personal history—therefore experience experts are people who have developed critical insights and professional expertise alongside their lived experience. Experience experts are not merely about sharing a personal story, but about using personal experience and developed professional skills as a foundation for systemic change.
The path forward: ethical and sustainable inclusion of lived experience
To realise the ethical and sustainable inclusion of lived experience, as well as experience experts, it’s important to consider the differences as an organisation/NGO, also taking in account the individual aspects such as motivation, expectations and abilities of the lived experience. For the experience experts it’s important to have an approach by the equity method that acknowledges the circumstances from which they came, while also upholding the same standards as other professionals.
To truly harness the power of lived experience while avoiding and managing its pitfalls and risks, several key measures must be taken:
- Fair compensation: People with lived experience should be paid equitably for their contributions, just like any other expert or professional.
- Informed consent: People should fully understand the long-term implications of sharing their stories, including potential social and professional repercussions.
- Development pathways: Structured programmes should be in place to help people transition from lived experience to experience expertise, ensuring that experience is combined with professional knowledge and expertise, ultimately resulting in a sustainable career.
- Protection against exploitation: NGOs, media, and institutions must be held accountable for ethical engagement with people with lived experience, ensuring that they are not used merely as a “token voice.”
- Collaboration with professionals: Experience experts should work alongside professionals as equals, combining insights from lived experience with evidence-based practices to drive systemic change.
By prioritising ethical engagement and structured pathways, we can ensure that people with lived experience and experience experts are empowered, not exploited. The voices of lived experience must be amplified in ways that lead to long-term impact, professional growth, and societal transformation. We invite all relevant parties within the criminal justice system to join us, so together we can continue building a future where lived experience is not a label, but a stepping stone towards expertise, leadership, and meaningful contribution.
Stichting Sileo contributed to RESCALED’s position paper Lived Experience at the Core – Embedding Voices, Knowledge, and Expertise in the RESCALED Movement.
The paper stresses the meaningful inclusion of people with lived experience, uniting diverse perspectives within one framework and centring the individual. It calls for lived experience to be embedded as a foundation for systemic change, a vision Sileo fully supports.
