Understanding and Defining the Roles

Lived 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 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 Lived Experience informed work/perspectives include:

Peer, Survivor, Service User, Consumer, Mad Studies 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 Experience role’?

Lived Experience workers have had life-changing personal experiences with mental health and/or alcohol and other drug use, accessed support services, had periods of healing/recovery, and are employed in diverse roles to use their ‘lived’ expertise to help other people accessing services.

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, and alcohol and other drug use, to improve outcomes for people accessing services. 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 Experience roles?

Challenges with 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. 

+

Personal identification with and experiences of service use

Note:

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.

The majority of our already published studies have focused on roles informed by direct or personal experience of service use and so the definitions so far focus on roles informed by direct experience.

As our studies/articles which have explored roles informed by experiences of supporting someone else become available (are published) we will up-date both the definitions page and the research summaries. 

What makes Lived Experience roles effective?

Lived expertise, not just having a lived/living experience but what has been learned through that experience and how it’s applied

Links with and understanding of the wider Lived Experience movement 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

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

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

Being an advocate/change agent

Strengths-based, focused on the relationship/person

Willingness to potentially face discrimination/negative attitudes as a result of being ‘out’ about their experiences

The role of unions in Lived Experience Workforce development 

Another emerging direction influencing Lived Experience Workforce development is the current and potential role of unions. As a grassroots member-led movement, the development and history of unions has parallels to the consumer movement. 

Potential benefits of unionisation are:

  • Assistance in developing whole-of-workplace policies that support mental health and wellbeing in the workplace and specific policies to support Lived Experience workers
  • Advocacy for workplace conditions. This may include concerns about fair treatment, discrimination, workplace adjustments (also known as reasonable accommodations) or the impact of the emotional toll of Lived Experience work and re-traumatisation
  • Support to develop industry awards or enterprise bargaining agreements that support the development of the Lived Experience Workforce within mental health and other sectors.

Currently there is no union dedicated to the Lived Experience Workforce. There are many unions in Australia that specialise in providing support and representation according to workers’ occupation, industry, employer and/or location. Unions charge different membership fees and may have different ways of providing support and advocacy.  

 

‘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.