Lived experience: not what happened, but what is known because of it.

People with lived and living experience (PWLLE) are those who have lived their life and personally experienced the issues we are professionally interested in as social worker, policy makers and strategists. Their experiences provide them with unique opportunities to understand that experience with no formal training, and in many times to analyze that experience, and provide sound advice to others who either pass through it or deal with it.

The term “lived experience” brings a social problem tone to it: poverty, mental health challenges, addiction, homelessness, incarceration, or systemic discrimination. The association of “lived experience” primarily with negative or marginalized experiences is a reflection of how society defines “expertise” and whose voices have been excluded from formal decision-making.

It is in the best interests of us as leaders, especially if we do not have lived experience ourselves, to engage PWLLE because they have  direct, personal engagement with the systems, services, or barriers with  critical insights that cannot be captured through data alone.

Why Should We Engage People with Lived Experience in Policymaking?

1. Engaging those directly affected ensures that policies are better aligned with real-world needs, constraints, and cultural realities. They help identify blind spots and bring nuance that traditional data may miss.

2. When individuals see their own experiences reflected in public policy, public trust increases. Engagement signals inclusion and respect, especially among communities historically excluded from decision-making.

3. Solutions co-developed with people who use services tend to be more practical and sustainable, because they are shaped by the lived realities of those navigating the system.

4. Including lived experience is a means of redistributing power, valuing knowledge beyond professional or institutional credentials.

PWLLE are being vocal that engagement with them needs to be thoughtful and ethical. Be mindful of tokenism without real influence or decision-making power. Also ensure that PWLLE are protected from re-traumatization and also having them share traumatic or personal experiences without fair compensation or support. Before you engage them, assess your culture and team and ensure they are trained on stigma.

One of the highest risks, is to overburden them with the responsibility to represent the trauma of their entire communities.

I am learning from PWLLE on how to do this inclusively and ethically every day. The best lessons I learned are:

-          PWLLE want to be engaged in the process of how they are engaged and not only on their lived experience.

-          Compensation is needed but it is not only financial- peer support, psychosocial support and career support are other forms of compensation.

-          Trauma-informed approach is a must in engaging PWLLE. Accessibility is a must too.

-          From the get go, let PWLLE know how, when and where their input will be used  and to what extent it can influence decisions. Be transparent and realistic.

-          Lived experience is not monolithic. The stories I heard on the same topic were told differently across race, gender, and age groups.

I have wishes:

My wishes for the future of work with PWLLE is expanding the use of the term beyond crisis and harm. Lived experience has positive components including the elements of learning, resilience, and leadership.  

I wish that engagement of PWLLE is not only to "fix" broken systems, but as a source of creativity, and divergent thinking to policy making.

Before we engage with PWLLE to extract a narrative from them, we need to recognize  that lived experience is not what just happened to people , but what they know because of it.