On ‘lived experience’

For years, I’ve thought that the expression ‘lived experience’ is an academic term. Lately, I’ve seen its emergence outside academia and, it seems, whoever can, they talk about lived experience. I want to comment on this, having wanted to this post for quite some time.

The straw that broke the blogger’s back was this tweet:

When I read it, I immediately started wondering who exactly is asked to apply. What’s the difference between mere experience of ‘addiction and mental health issues’ and their lived experience? Do you need a special kind of experience? Is it longer? Deeper? More profound? The advertisement doesn’t specify it at all and I am baffled. Is it possible that the phrase ‘lived experience’ is an equivalent of ‘experience’, except the former is somehow better?

As I said in the introduction, for me the phrase ‘lived experience’ has always been an academic term. Associated with ethnography and other qualitative research, ‘lived experience’ has always been narrative. In other words, the term has never been used in reference to what people actually experience, the inner psychological reality, so to say, but, rather, to what they say. Lived experience is about how people translate that ‘inner stuff’ into a story. And when I wrote this, I looked out for definitions of ‘lived experience’. It seems that what I’ve just written is not off the wall. Although some definitions refer to practices and actions, making it broadly representational rather than only narrative, many are happy with the narrative aspect of experience.

So, that’s lived experience as it’s been used in academia. But all of a sudden, the term is used to mean something different. Here are a number of quotes (with links) which I found after typing ‘lived experience suicide’:

  • A lived experience of suicide is having experienced suicidal thoughts, survived a suicide attempt, cared for someone through suicidal crisis, or been bereaved by suicide. (link)
  • People with lived experience are individuals who have experienced a suicide attempt, suicidal thoughts and feelings, or a suicide loss. (link)

These two quotes are fairly typical of what I found.  However, it’s a bit more confusing when I searched for and ‘lived experience mental health’. It seems everyone knows what it is, as I have found no definitions (but, admittedly, I didn’t look all that hard). Rather, I found circulars such as

  • We use the term ‘experts-by-experience’ in this report to include people who use mental health services, people with lived experience of mental illness, as well as those who care for them. (link)

Indeed, I found quite a number of definitions of lived experience as being an expert by experience and the other way round (another link here). I also found quite a number of references to lived experience without any explanation – it seems people just know what it is.

Before I continue, I would like to show a definition which is a bit strange, shall I say mildly. Consider (link):

  • We want the Lived Experience Panel to include:
    • Those who have previously attempted suicide or who have experienced suicidal thoughts/ideas.
    • Those who have lost a loved one to suicide.
    • Family/loved ones who support someone who experiences suicidal thoughts/ideas.
    • People from key risk groups.
    • People from a variety of geographical areas and diverse and cultural backgrounds.

It basically defines lived experience as anyone we say, making the whole thing fairly useless. Incidentally, I find the idea that there are key risk groups, as opposed to non-key, quite bizarre. Are we really saying that people experience of being in one (social) group, as opposed to another, makes experience of suicide or suicidality different?

Anyway, after reading more and more references to lived experience, I continued to wonder what exactly is gained by putting ‘lived’ in front of ‘experience’. And I continue to be none the wiser. It seems to me that most of the texts I found basically talk about experience. And so, I started wondering about sources of this. After all, it doesn’t just ‘happen’. All those people writing those texts, organisations adopting them must be happy to see references to lived experience, not just to the regular one. Lived experience must somehow be more attractive.

One reason is so simple that I dread to write about it. One document says:

  • The field, along with health and behavioural health care organizations, is now beginning to engage the people with the most intimate information about suicidal thoughts, feelings, and actions—those who have lived through such experiences. (link)

Could it be this, I asked myself. Is it really lived experience because you lived through it? I mean, could it be so banal? Of course, you immediately ask yourself how many of your experiences you haven’t lived through. I can’t think of one, I must admit, but perhaps people wiser than me (it’s not so difficult to be wiser or cleverer than me) can think of all sorts of experiences you have and haven’t lived through them. But then, I thought, but these are texts which are targeting people like me, you know, regular people. So, it would seem, lived experience continues to be just experience.

That wasn’t satisfactory. It didn’t really answer the question of the expression’s attractiveness. I had to come up with something better. And I might have.

I think that the attractiveness of the expression is in its mystery. We might not know exactly what it means, but, hey, let’s use it anyway. In such a way, we create a fake shibboleth – only people in the know can really appreciate the expression. If I use it, it’s like I am part of the in-crowd. I went further with the argument. I think it’s like with saying that ‘commit suicide’ is not allowed. ‘Die by suicide’ is better – another shibboleth defining those who really really care about suicide stigma (here is my earlier blog about it).

As I am writing this, I am reminded of a quote from Mikhail Bulgakov’s Master and Margarita (I’ve read it more times than I care to remember). Woland, the devil, says in the book:

I am part of that force which wills forever evil and works forever good. *)

I would say something similar. The phrases like ‘lived experience’ or ‘die by suicide’ are created by

the forces that forever will good and inclusion, but always end up dividing and excluding.

Please bear with the strength of the sentence, it’s meant to reflect Woland’s statement. Whenever you come up with yet another better way of saying things, like it or not, you immediately exclude those who disagree, who are not so unhappy with saying ‘experience’ or ‘commit suicide’. Or perhaps you exclude those who don’t really know what ‘lived experience’ is. And they’re either forced to pretend to espouse it, or, alternatively, must fall by the wayside. Whenever you introduce a new label for people’s experiences, you exclude those who don’t want the label.

No one owns the way we speak, not even the linguists (though some would certainly like to!). And especially when it comes to difficult, sometimes extreme experiences, perhaps it’s better to tread carefully. Without the new linguistic marzipan.

Note: It has been pointed out to me by Szymon Zdanowski that, in fact, Woland says no such thing. In fact, the quote is used by Bulgakov as a motto. It comes from Goethe’s Faust.

  1. My, perhaps naive, understanding of the meaning of ‘lived experience’ was as in contrast to vicarious /indirect experience? Shared experience is one of the foundations of peer support so in a research trial we found it important to set up separate groups for patients and their carers, even though both had experience of depression.

    1. Dariusz Galasinski

      I’d go along with this, but I don’t think there is any evidence that this is how it’s understood.

      I accept your example, but I am not certain the two groups of people would have mistaken each other’s reference to experience. Also, the moment you switch from nouns to verbs, things get easier, I think. While patients will say: I’ve experienced depression, their carers will probably not.

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