The misuse and co-optation of the term ‘lived experience’.

Frequently and increasingly, I see this term incorrectly used. The term ‘lived/living experience’ is not just something you might say to describe any personal experience, it specifically refers to firsthand experience of mental health challenges and the distinct experience of marginalization that occurs as a result.

Mental Health & Civil Rights.

VIMIAC, the peak Victorian organization for people with a lived/living experience of mental health challenges defines the term as - the firsthand experience of using mental health services. This includes navigating, surviving, and often being harmed by a system that has historically failed the very people it was intended to support.

Sometimes we need to be specific with language and definition. This is not for the purpose of excluding or erasing other people and their stories of distress and survival, but to preserve the clarity and focus of our movement and the work we continue to do.

The Consumer Movement (ex-patient/survivor movement) began to take shape in the 1960’s & 1970’s alongside other civil rights movements. The focus was advocating for the rights of individuals who had experienced mental health treatment, particularly highlighting issues of forced treatment and inhumane practices within psychiatric institutions. Self-determination, agency & empowerment were key goals, and it influenced the introduction of recovery-oriented practice, holistic systems of care and consumer led/co-produced services. From the momentum of the Consumer Movement a new need emerged within services for designated lived experience roles held by individuals with specific knowledge of the process of mental health recovery, and a new mental health discipline was born – the Lived/Living Experience Worker.

Nothing about us, without us.

I am a Lived/Living Experience Worker (LLEW) sometimes known as a Peer Support Worker. This means I use my firsthand experience of mental health challenges, navigating mental health treatment and recovery to support others facing similar challenges.

The experience of stigma, discrimination, violence and violations of human rights is not unique to people with lived experience, but the specific expertise of those who have lived through it is.  

People with lived/living experience continue to have their voices trivialized and ignored and misuse of this term contributes to the dilution and minimization of their experience.   

The term has been co-opted by government and services particularly in relation to mental health reform, often diluted beyond recognition from its radical origins in the Consumer Movement, instead serving as a superficial token rather than a commitment to genuine accountability.

Beyond this, on an organization level the role of the LLEW has also been co-opted and disfigured beyond recognition in some cases. Again, serving as nothing more than a tokenistic figure head of change and evolution, while performing the function of a traditional mental health role. This is not only damaging to the movement but individually harmful to the LLEW who’s values rooted in mutuality and advocacy are in often in direct opposition to the structure of a traditional mental health role.

Many organizations define ‘lived experience’ in a way that suits them, often excluding voices that are ‘too challenging’ or deemed as ‘unprofessional’. The result is sanitized version of lived experience, that is easier to market and control within institutional frameworks, and a perpetuation of the ‘perfect victim’ archetype.

It’s even become common for people to weaponize the term to silence criticism in debates based simply on the notion that their personal truth or ‘lived experience’ somehow trumps everything else.

“The only source of knowledge is experience." Albert Einstein

Peer Work is brave work. Not only does a LLEW have first-hand experience of the oppression and marginalization that commonly accompanies mental health challenges, but they are also frequently belittled and devalued by their colleagues because of their disclosure of lived experience. This sort of stigma and discrimination is a symptom of the still dominant medical model of health care that sees diversions from ‘normal’ as diseases to be fixed regardless of an individual’s wishes, reduces people to labels and shifts power away from consumers.  

When someone asks what a LLEW does, it is tempting to answer with all the things we don’t do, like diagnose, prescribe or give advice. I choose to answer in a way that confidently declares the worth of my experience and the depth of my insight. My answer is focused solely on the unique and highly valuable expertise I have - ‘I am an expert in recovery’.

You lived through your experiences, that goes without saying. Our lived experience is not the same thing.