I turn off my camera as the panic builds in the back of my throat. I leave the meeting the second everyone begins to say goodbye; all I want is to get up and pace around while the flashbacks cut across my mind like a film reel.
I am paid to sit there and ‘give my perspective’, though it often feels like it is less about my true views and more like my name and experiences are tokenised: used as proof of user-involvement and so-called co-production. Any time I bring this up, I am largely told how grateful I should be, for how different the system is now and that I am involved at all.
At the age of 19, my work as a “Lived Experience Expert” felt like it was healing me. Four years after my own experience of being institutionalised, I was angry and desperate to change the system that had broken me. Five years later, much of the work I have been involved in can only be described as re-traumatising, leaving me unsure how to live within this reshaped version of my trauma.
You cannot fix a system that is not broken, because it was built this way on purpose. It is a bitter feeling, to have believed so intrinsically that you could change the thing that broke you, only to leave feeling worse than when you started.
An “industrial complex” refers to a socioeconomic concept that describes how businesses become involved with social and political systems, with both psychiatry and autism services experiencing such an effect. I argue that lived experience as a concept is becoming its very own industrial complex, largely without the consent of its participants.
The psychiatric industrial complex, or mental health industrial complex, refers to the billions made through ‘treating’ mental ill-health, and through the biomedical model that sees mental ill-health, distress and trauma — and forms of neurodivergence — as disordered and often, a moral failing. It continues to oppress whilst racking in endless amounts of money. The autism industrial complex is similar: billions are gained through Applied Behaviour Analysis (ABA) therapies, cure research, and technologies that ‘support’ eye contact and social skills — much of which is done through persuading parents and the public that autism is something to fix. If lived experience does exist as an industrial complex, it is inherently intertwined with its counterparts, both the psychiatric and autism services industrial complexes that are embedded and normalised within society and fed by states, governments, and by the belief of individuals that they are necessary, rather than spiteful or based in inefficiency.
As lived experience experts or practitioners, or experts by experience, we are often at our most vulnerable. Our desire is to be seen as equal to our clinical peers and to make change that often is, from the outside, simply not possible, nor the true desire of the systems that have brought us in. Money is being funnelled into lived experience and co-production work, and rightly so, but in some spaces, this signals nothing more than the buying of a rubber stamp. They promise that they have engaged us in the work: “Nothing about us without us”, they say, invoking genuine survivor rhetoric as they ignore what we have to say.
The characteristics of an industrial complex include purporting to have a stated benevolence of ‘doing good’, while in reality, they are profiting off inefficient or ineffective systems — the more harm, the more business. Whether with intent or not, much of the way lived experience is used by the state can be seen to follow similar patterns.
We are left frustrated at the lack of change, whilst more money is pushed towards the creation of more and more “co-produced” work. Not only are our names and faces used to supposedly prove and celebrate such work, but more funding is given on the basis of our involvement, only for there to be no real change at a carceral or grassroots level.
But would we have put our names and faces into these projects had we known the reality of how they would end up, and how little they would listen to us? Would we ever have allowed them to celebrate their commitment to co-production, as their project perpetuates the carceral system that broke us in the first place?
Service users are left struggling, whilst trusts and systems attend huge award ceremonies on the basis of their ‘successful’ service user involvement. The cycle is perpetuated, as they receive more funding for ineffective co-production and nothing changes to the violence and coercion that is occurring by the system.
This is not to say every piece of co-production is bad — I have been involved in projects that have been genuine and caused change on the ground. But even genuine co-production efforts are not immune to the structural issue of pseudo user involvement, and should pause their celebrations to consider the wider system of potential harm.
And if the way that systems are using lived experience is not an industrial complex yet, the question is: how do we prevent it from becoming one? For now, my main objective is to stop allowing my name to be a de facto rubber stamp. My experience — both lived, and professional — will not be a cheap way to believe you have done enough.
The Limitations of Lived Experience
This blog is part of our “The Limitations of Lived Experience” series which was open for submissions from NSUN members in January 2025 and published from February 2025. All the blogs in the series are available here.