The Fetishisation of Lived Experience…

Fetish n. any object, idea, etc., eliciting unquestioning reverence, respect, or devotion. (dictionary.com)

You have lived experience, don’t you? In the respect that you have experienced your own life. My guess is you would consider yourself an expert on your own life — an expert by experience. Another guess: some (or maybe a great deal) of your experience, the experience of living, has been difficult. You’ve had struggles — maybe you still do. If your life is not especially difficult currently, it probably will be again. The likelihood is there have been times, or still are times, when you needed help. You might not have received help, or the help you received might not have been as, um, helpful as it could have been. You might believe you would have been better helped by someone who’d experienced difficulties similar to your own or, at least, by a professional and/or service that had been informed by some people with similar experiences. You might be right.

Although, having had difficult experiences that are, or appear to be, similar to other people’s doesn’t necessarily mean we know how to help them or what they might want and need. Also, sometimes we don’t know what we need — we might need someone, an expert by, for example, study and professional experience to help us understand. I think the previous two sentences might jar on some. In fact, I briefly considered deleting them. This is odd, because they’re self-evident truths. However, it is equally true is that, for a long time, what are sometimes called the ‘helping professions’ have been rather paternalistic — ‘experts’ telling people who need help what is ‘best’ for them. Leaving people disempowered and feeling ‘done to’. This has not been very, um, helpful. Perhaps worse than this — some types of, really very hard, lived experience have pretty much been ignored.

I have a type of lived experience, which, after a very long time of being almost completely unacknowledged, now has a small amount of currency (in the UK at least). There have been recent government reviews and, over the last few years, increasing interest from the mainstream media. The lived experience I have is called care experience. I don’t know if I am brave enough to attempt a definition — it seems to mean anyone who spent a period of time, or multiple periods of time, during childhood living with and being cared for by people who were not their parents. This requires quite a big umbrella. For example, it would include a profoundly disabled child who lives with his committed and loving parents, but who spends planned periods of time each year in residential respite care. And it would include a child removed from the care of her parents due to neglect and intra-familial sexual abuse, who has 10 sets of foster carers before before being bounced around residential children’s homes through her adolescence. It is pretty difficult to argue there is any meaningful commonality in these two examples. It’s not possible for anyone to claim that via lived experience they are an expert on all aspects of the care system.

Nowadays, after many years working in children’s homes, I am a child and adolescent therapist. In this role, I see a number of children and young people who are in care for weekly therapy sessions and I support others who are involved with children in care to think about those children and their needs. Does my own experience of being in care help me in these roles? Does it make me ‘better’ at them? Hard to know for sure — there isn’t a non care experienced version of me working as a therapist with children in care to measure myself against. I have friends who are also therapists working with children in care, they did not grow up in care but in conversation they often have insight into the impact of care experience, I know this, in part, because occasionally they help me to understand aspects of myself — perhaps their greater distance from the issue can actually be helpful?

(As a side note, I also see children who have grown up in relatively ordinary families, cared for by both parents. I do not have this type of lived experience. Nevertheless, I hope I can offer them something of value).

During my long years working in children's social care, I have seen many examples of lived experience being actively problematic — either carers, social workers, and so on, over-identifying with young people or, conversely (and more commonly), people defending against thinking about the impact their own childhood had on them, therefore leaving them unable to acknowledge the impact of trauma on children they have responsibility for. I have witnessed some breathtakingly thoughtless and unempathetic practice from people I know had horrific childhoods.

That said, my own clinical supervisor tells me I have a particularly strong understanding of the wider systems around children, especially those in care, and the impact of those systems on children and young people. More explicitly — how those systems are experienced by children and how this effects them. I guess I think my supervisor is right. I think this understanding comes from having worked in the care system for a long time before becoming a therapist, and because it is a preoccupation of mine (in other words, because I think about it). Which begs the question — why is it a preoccupation? It would be facile to suggest it has nothing to do with my experiences when I was growing up.

I think, perhaps, seeing children and young people experience these systems might resonate with me in a way that is different to other people who have not had these experiences and that, sometimes, this can be helpful. That is probably about as far as I am willing to go in claiming some kind of added value that my lived experience provides in my work as a practitioner — now as a therapist, previously as a residential child care worker. It is, I think, unknowable how much my lived experience has impacted on my one-to-one relationships and work with children in care, but having someone with some understanding of how they are experiencing the system around them operating within that system is probably helpful. Maybe it is useful to have someone who has, say, a visceral understanding of what it is like to be shipped from one foster carer to the next, or what it is like when you never see your mum, and so on, present in meetings and having informal conversations with colleagues. But none of this means I am a ‘better’ psychotherapist (or previously residential worker) than those without care experience — they will have different qualities and attributes to me and, indeed, their own lived experience. Their own pain and loss — just like you do.

I very often resent it when, in various ways, other people centre my care experience rather than my professional qualifications and experience. As if it is my childhood that gives me credibility and my experiences and hard work as an adult have less value. However, I am a bit confused here, aren't I? Because I have centred my lived experiences in this blog (and others), I have used them discursively, but also to give strength to my arguments and to make them more credible (I could have made the same points without mentioning my own experience). I am sort of suggesting: ‘You might disagree with this, but I am allowed to say it, because of my lived experience’.

Some time ago, I was explaining this tension, my discomfort that I might be ‘dining out’ on my childhood, to a friend of mine. My friend is kind and thoughtful, and he said: “Yeah, you need to get over that”.

I have been focusing on the value or otherwise of practitioners having lived experience, but it is perhaps an even more commonly held view that those with lived experience should be involved in designing services. Many charities and, increasingly, public bodies (with varying levels of sincerity) will make great play about lived experience being “at the heart” of service design and policy making — often called ‘coproduction’. Indeed, such is the current fixation with ‘experts-by-experience’ it would be very difficult for an organisation not to emphasise this. However, from afar it seems to me people with lived experience often come away disappointed and bruised by engaging in this type of coproduction. I wonder if this is because organisations are over promising. Perhaps, sometimes, suggesting coproduction is dishonest and it would be better to say: “we sincerely want to hear about your experiences and your thoughts and views on our service, but it is complicated and we can’t make any promises”. Of course, sometimes other forms of expertise must have primacy — if you’re designing a hospital you need an architect not a patient, but it might be helpful for the architect to talk to patients nevertheless.

The phrase ‘expert-by-experience’ is problematic, because while there might well be crossover with other peoples experiences, you can only really claim to be an expert on your own experience. Both organisations who have ‘expert-by-experience’ involvement and the the individuals themselves need to remember this. If you are an ‘expert-by-experience’ on a board, committee, project or similar and you imagine you are representing an entire group — especially one as large and diverse as, for example, care experienced people — then I would invite you to take a cold shower. Further, there simply is no way to make lived experience involvement in service design and policy making truly representative. There will always have to be a selection process, initially self-selecting of course — those with the desire/need/confidence to put themselves forward — and that narrow group will be narrowed further by the organisation's selections.

Why does an organisation or project select this individual and not that one? Is it, even unconsciously, because they think they won’t rock the boat too much? Increasingly it seems necessary to have experience of being an ‘expert-by-experience’ — shrinking the pool of people selected from even further. And what motivates those who put themselves forward? Likely a mix of things — some more conscious than others. No doubt a genuine desire to improve things, and perhaps try to make sure other people have better experiences than they had. Perhaps, too, a very legitimate desire to be heard after years of feeling marginalised and voiceless. But ego and vanity will be in the mix too — no one’s motives are as pure as the driven snow. Including mine. Why have I written this? I do think it is important or, at least I thought it worth saying, but I will also find it narcissistically gratifying if, out of the handful of people who read it, a few say nice things. For those who move up the ‘experts-by-experience’ career ladder, proximity to power can be seductive. Will they continue to focus on what needs to happen to improve services, or moderate their tone and views to keep their seats at the top table?

One area where lived experience, people telling their stories, is definitely necessary is raising awareness and campaigning. This could be with a very specific aim, say, greater disabled access on public transport, but it does not need to be. It is entirely legitimate for groups of people to shout “notice us” or “this is crap and needs to change”. It is not even necessary to state how it should change. It is perfectly reasonable to shout “fire” without knowing how to put it out, or want a role in doing so.

I guess all of this has been a long way of saying: “lived experience can be important, but here are a bunch of caveats to consider”.

Finally, when I was a child there were two phrases adults regularly used whenever I complained about something: “There are children starving in Africa” and, in response to any entreaty that something was not fair, “life’s unfair” (which, surely, begs the response: “why don’t we try to make it a little fairer then”). I found these phrases hateful then and I do now, so I do not want to imply any form of them, and, of course, some people’s lives are objectively harder than other people’s, but despite that, and as I alluded to at the start, it is worth remembering that everyone has lived experience and some of that experience has been hard.