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.

Why is your Yoga teacher trying to sell you something and does it matter?

Is it just me or is almost every post on Instagram trying to sell me something? Whether it’s a ‘conscious partnership’ with an unethical clothing brand, discount codes for adaptogens you don’t need or their next ‘sacred community offering’, it feels impossible to escape the barrage of sales and marketing.

How did we get here?

A practice that is inherently anti-materialist in nature has been appropriated and commodified into what we now know as the modern wellness industry. Yoga as it exists today, especially in the west, is inextricably linked to capitalism and consumerism and we only need to look as far as your favorite yoga teachers’ most recent insta post brand deal drop to see this in action.

We probably can’t talk about this subject without briefly addressing the cult of the yoga teacher, the rise of celebrity within the wellness industry and social media. As the reach and influence of teachers has grown so has the commercialization of the practice. Naturally, brands will want to leverage this influence to sell their products and teachers use this recognition to establish credibility and attract further opportunities. When a teacher aligns themselves with a product, they align this product with yoga. This can be a confronting truth to accept.

Power, Influence & Exclusion.

A lululemon ambassador won’t explicitly say that you need a new matching set every season to practice Yoga, and although implicit, the message is very real. For people that supposedly deal with energy as their craft, there seems to be some difficulty around acknowledging the existence and impact of these unspoken assumptions. I guess it’s easier to plead ignorance than to confront the massive cognitive dissonance required to speak about nonattachment while being the face for consumption.

To make matters more insulting and ridiculous, often the people having their labor exploited (and their human rights violated) to produce those new sets every season are the same people from which the practice of Yoga originates.  

The Yoga studio might not have a sign on the door that says ‘NO lulu NO entry’ but this is how it can feel to so many people. When it seems that there are certain unspoken conditions of entry to a club, if you are unable meet those conditions, you probably won’t try to come in. The studio didn’t exactly say you can’t come in, but the implicit barriers mean membership inevitably becomes less diverse, and increasingly less welcoming to diversity as this process continues to recycle. I’m not just talking about leggings.

Spirituality & Capitalism.

Matthew Resmki the author of ‘Surviving Modern Yoga’ and ‘Fascist Yoga’ talks about spirituality being downstream from material conditions.  He means that inside of capitalism, a spiritual culture will be forced to reinvent and repackage itself in new ways if it wants to survive. He gives the example of yoga studios’ sky rocketing rents forcing the proliferation of teacher trainings into an already saturated market, and yoga teachers feeling pressured to consume these products to set themselves apart in a bloated workforce.

We tell ourselves that we love it, and that it’s not work because of that. This might be true to an extent, but our best friend cognitive dissonance is here to save us from insanity again. It’s depressing to acknowledge a reality in which we are at the mercy of a punishing and unrelenting system of labor exploitation and consumption. It is much easier to say we like it, and to simply pass the buck on to the next consumer down the line.

If we can stick with the river analogy for a second, the next consumer downstream is the Yoga student. For many students, a Yoga teacher is someone to admire, perhaps even someone to aspire to be.  When this power dynamic is not explicitly addressed and challenged it means how we conduct ourselves carries huge influence. What we wear, what skin care we use, what we eat and how we look becomes associated with Yoga and under capitalism, these are all things that can be brought. Wait, you have discount code for that? How convenient!

Now, back to my original question.

Why is your Yoga teacher trying to sell you something….and does it matter?

Brand partnerships give teachers more reach, visibility and perceived credibility and as a brand themselves this helps set them apart in a bloated market. Capitalism is inherently competitive and given the opportunity, most people will want to move their little monopoly piece forward if they can.

As I mentioned earlier, Yoga is a practice predicated on anti-materialism. Do I want the person teaching me about such things to also try to sell me stuff I really don’t need? Yoga is an ethical framework. Most brands won’t align themselves with loud and disruptive voices. These voices are usually the ones speaking up for social justice and for human rights. These are usually the voices taking a critical lens to the way we engage with Yoga, demanding for us to do better.

I want my teachers to be congruent in what they say and how they live, and when that isn’t the case, I want them to be capable of interrogating how they can do better. It is not congruent to teach non-harming and then promote brands that exploit South Asian workers. It is not congruent to teach non-stealing and then make money off indigenous cultures and practices without acknowledgement or payment.

So, does it matter? To me, it does.