The commodification of lived experience

I have always been relatively outspoken about my experiences both within the care system and mental health services. I think a lot of this stems from having my voice silenced for so many years, but also from the normalisation of relaying personal histories and traumas every time a new practitioner would enter the picture. The truth is, the constant pursuit to be listened to is exhausting. But what is more exhausting is the constant pursuit from organisations to exploit this vulnerability.

I remember my first encounter with what would now be considered a participation group. I was 15 years old, anxiously tugging at my jumper sleeve in the CAMHS waiting room like I did every week, and a poster advertising a new youth forum for people with experience of mental health services caught my eye. I had never even heard of the concept before — that ‘adults’ actually wanted to listen to what we had to say, not beyond the stagnant compliments and concerns box in the corner of the room. I jumped at the opportunity to sign up and began attending the groups and ‘service user engagement days’, whilst simultaneously thinking what the blooming hell is a service user and why have they scrawled this on a certificate and sent it to me in the post??!! My enthusiasm was short-lived as I quickly began to realise that all my fantastic and forthright suggestions on how to improve the services being provided weren’t going anywhere. I may as well have shoved them in the compliments and concerns box after all.

When I was 17 I was approached by a BBC journalist on Twitter after a tweet I had written about my frustrations. I had just moved out of foster care into ‘semi-independent living’, left without a CAMHS or social worker for months on end whilst I waited for my case to be reallocated. When I was asked to share my experiences on the radio I was ecstatic, excited about the prospect of being on the radio but also because I was angry about what had happened to me. I was hurt. Once again I felt like I had been discarded, my voice had been swallowed whole by the silence of these services. This was time for me to take my power back, to reach inside of those who had swallowed my voice whole, whilst exclaiming “I am STILL here and don’t you dare forget it.” That was the plan anyway. So I did it, a 15 minute uncovering of my life, for everybody to listen to on their commute home. I had mentioned one particular (but not out of the ordinary) situation where I had been waiting at my local A&E until the early hours of the morning after a mental health episode only to be sent home without any assessment or actual psychiatric help. Unbeknownst to me until I heard my feature live, they had contacted the hospital for a statement in which they had denied that I had attended the A&E department. I felt humiliated. I had essentially laid out my soul on the radio only to be told I was a liar. Now that I am a bit older, this experience sits very uncomfortably with me. Whilst I believe that the journalist was well-intentioned, and actually just wanted to highlight the challenges young people face against these systems, we really need to be thinking more critically about how discourses concerning ‘participation’ and ‘influence’ often induce more harm than it prevents. I’m not sure how ethical it really is to reach out to somebody who is knowingly in a very difficult and vulnerable position, hold their hand and tell them that they can finally have their voice, they can finally be heard, for that same child to be sitting alone in their flat at 17 listening to the broadcast on catch up, feeling as lonely and unheard as they did when they first wrote that tweet. But they best be thankful to the adults for giving them a platform to speak on.

Our stories are not just stories. They are real experiences that construct the fabric of our very being; every thought, every action and every future experience. Many of us don’t ever have the option of escaping what has happened to us — perhaps fleetingly through carefully constructed defence mechanisms — but they soon come back to haunt you. Many of the professionals who listen to us ‘have our voices heard’ get to go home in the evening and never have to live with these experiences for the rest of their lives. They have the luxury of forgetting. Even more so, they get to leave that event with a wage lining their pocket and a sense of fulfilment, the most the young people might get is a £15 love2shop voucher and some food in their bellies. But they best be thankful for the finger food buffet and the voucher too because they haven’t got any food at home anyway and at least they can buy themselves a new pair of shoes that don’t have half the sole coming off.

I do not wish to criticise frontline workers because I genuinely believe that most mean well and that they want people in power to listen to the young people that they so fiercely defend. The problem is in the way that organisations commodify our experiences to fulfil their own agendas. We talk about child sexual exploitation and the commodification of children’s bodies so vehemently, yet we rarely bat an eyelid when children’s stories are commodified for the profit of organisations. We should not have to delve into the most intimate details of our lives for people to pay attention. We should not have to bare our souls to be heard, for it to be acknowledged that the way we have been treated is abominable. I am a firm believer in the power of shared experience and storytelling for healing, but you are absolutely kidding yourself if you think it is healing when the same organisations that are begging us to tell our stories do nothing to help us change the trajectory of our story. We are expected to keep telling and telling, re-traumatising ourselves in hopes of getting some sort of healing or thinking that maybe it will help someone else out there to feel less alone.

Here is what I’ve learnt this week: We have the power to tell our story, but we also have the power to select who is worthy of hearing our story.