Lived and Living Experience roles exist in diverse organisations and settings, spanning entry level to executive leadership roles. While it’s true that everyone has some experiences of distress and adversity, not everyone has significant challenges that take their lives in an entirely new direction. Lived and Living Experience roles are primarily informed by life-changing challenges and experiences.
What’s in a Name?
Language in this space is evolving and will continue to change over time. There are differences in the preferred language for Lived Experience informed roles in some settings and countries.
Terms to describe personal Lived Experience informed work/perspectives include:
Peer, Survivor, Service User, Consumer, Mad Studies and others.
Terms to describe family/carer Lived Experience informed work/perspectives include:
Carer, Supporter, Family, carers and supporters and others.
At times we use different terms in our research studies depending on the terms common to particular settings or countries. For our broad work we favour Lived Experience, but acknowledge this is not everyone’s preference and respect other terms as part of the multiple perspectives central to this work.
What is a ‘Lived and Living Experience role’?
Personal Lived Experience workers have life-changing, first hand challenges with distress and adversity, accessed support services or attempted to access services, had periods of healing/recovery, and are employed in diverse roles to use their built or lived expertise to help other people accessing services.
Family/carer workers have life-changing experiences witnessing, walking beside and/or supporting someone with significant challenges, service use or attempts to access services, periods of healing/personal recovery, and are employed in diverse roles to use their built or lived expertise to help other people who are supporting family or significant others.
Lived Experience roles are not only informed by an individual’s experience with adversity, service use or even recovery, rather it’s how those experiences are contextualised in relation to Lived Experience concepts and literature, as well as shared issues of marginalisation, loss of identity and impacts on personal agency.
Ultimately, Lived Experience work is about how experiences are understood and applied to benefit others.
Lived Experience workers are commonly employed in settings and services focused on: mental health, disability, suicide prevention, harm reduction, and alcohol and other drug use, to improve outcomes for people accessing services, their families and significant others. Increasingly Lived Experience roles are also being established within the wider workforce, in industries such as mining, construction and energy to improve the wellbeing of workers.
Lived Experience roles are varied and include positions providing; direct support, advocacy, management, research, education, training and/or consultancy.
What is the lived experience needed for Lived and Living Experience roles?
Challenges with distress and adversity (e.g. mental health and/or alcohol and other drug use) that significantly impact a person’s life so much they redefine their idea of themselves, their vision for the future and their place in the world.
Experiences supporting someone else with distress and adversity (e.g. mental health and/or alcohol and other drug use) that significantly impact the supporter’s life so much they redefine their idea of themselves, their vision for the future and their place in the world.
Personal identification with and experiences of service use or attempts to access services.
Similarities and Differences
In some contexts and settings ‘Lived Experience workforce’ as a title has come to include both roles informed by personal (direct experience) as well as experiences supporting others who are accessing services.
However, these are still recognised as distinct workforces with different roles.
In summary – roles informed by Personal or consumer Experience require first-hand experiences and perspectives of service use and diagnosis, often first-hand experiences of loss of personal freedom and identity. These roles work primarily with people accessing services for themselves, and hold a greater emphasis on personal autonomy and confidentiality.
Roles informed by Family/carer perspectives draw on experiences and perspectives of witnessing, walking beside and supporting another person. People employed in these roles work primarily with family or significant others of people accessing services, are more likely to experience complexity at times in questions of safety and risk vs autonomy and choice, and often hold a greater emphasis on ‘relational recovery’ – i.e.: a family-inclusive approach to recovery.
What makes Lived Experience roles effective?
Lived expertise, not just having a lived/living experience but what has been intentionally learned through that experience and how it’s applied to benefit others
Links with and understanding of the wider Lived Experience community and concepts including Lived Experience-led research/training
Work that is values-based and authentically Lived Experience informed, person-directed and aligned with recovery principles
Being an advocate/change agent
A focus on human rights and systems change
Greater flexibility and ability to be responsive to the person accessing services
Significant understanding and ability to use personal story effectively and appropriately for the benefit of the person accessing services
Show that recovery is possible and it’s not a linear journey – it’s natural to have ups and downs and that’s okay
A bridge between organisations and people accessing services/supporting people accessing services
Trauma-informed: awareness of the role and impact of trauma and wish to respond compassionately and sensitively
Ability to challenge power imbalances and provide more equity in support
Strengths-based, focused on the relationship/person
Willingness to potentially face discrimination/negative attitudes as a result of being ‘out’ about their experiences
‘Lived Experience’ and ‘lived experience’
You may notice we alternate between capitalising and not capitalising ‘lived experience’. The capital Lived Experience refers to the professional: designated roles and workforce issues, non capitalised lived experience refers to the personal: having a lived/living experience but not necessarily working from that perspective or building Lived Expertise from those experiences.