The term ‘lived experience ‘ has been on my mind recently. I have been mulling over the term like rolling a marble between my fingers, but have struggled to articulate the tension I feel about it. The definition of ‘lived experience’ in the sense I am discussing is, ‘Personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people’ (Oxford Reference Dictionary).
This concept and label has gained traction in the charity sector, as well as in research, to refer to the expertise individuals develop by experiencing issues first-hand themselves. The type of experience valued depends on the organisation’s aims- but charities may seek to include those with ‘lived experience’ (also called victims or survivors depending on perspective and preference) in their activities, events, planning etc. The extent varies, but the attitudinal shift is typified in the slogan ‘Nothing about us, without us’, broadly meaning that policy work should happen with the involvement of the people it directly affects.
One of the common rebuttals to the term and concept is the idea that everyone who has lived has some form of lived experience. It’s a term that privileges some lives over others. And indeed, it is meant to, it was developed as an idea to include those without the formal qualifications say in domestic violence practice or law etc, but instead centres those who have lived and breathed it. So, the idea was that lived experience was given a status.
But recently, for various reasons, I have been taking issue with the past tense of this phrase. Lived. it implies the past. Over. Ended. A life survived and reflected back on.
And let’s face it, many charities who book a ‘lived experience’ speaker, or ‘expert by experience’ don’t expect someone actively (currently) affected by trauma. It is this distance implied by the term that makes it able to be professionalised or packaged. To be able to tell stories of the past. And I have considered this myself in research planning. We consider whether to invite participants who have had distance between themselves and the traumatic event, so they are more able to cope with talking about it. We don’t want to cause further distress.
The connection between the lived experience of the past and the future has been linked through the ACEs study/findings. It gained traction precisely because it forged links between issues of childhood adversity and an increased likeliness of a range of impacts, such as mental health problems later in life. This suits risk-assessing culture and practice, but I don’t see much recognition in general healthcare or workplaces. Remember, the study was initially carried out for private healthcare insurance to predict future costs. It wasn’t designed for compassion over a lifetime.
Anyway, as I have been chewing this over, I’ve been left wondering… What about the middle bit between, also known as ‘the dash’ in the poem about life and death by Linda Ellis. ‘Lived’ experience could explain past trauma and ACEs can predict the future impact. What about the messiness of life in-between?
I’ve been thinking about this as the stone dropped into the river and the ripples.
Now I want to think this through specifically for child survivors of DVA. We have the pebbles dropping in childhood. Then the ACE’s framework gives us some understanding of the ripples on the outer edge with the oft cited facts such as that those with 4 or more ACEs have 2x the level of liver disease, 3x the level of adult smoking, 4.5x more likely to develop depression etc etc.
But what about the water and ripples in-between the incident and the outcomes. The dash. Life lived.
Recently I have thought that we all too often assume that this middle part is the time of healing, or recovery. We expect the effects to lessen, and the sting to go out of the tail.
But many of the complex issues that arise in families where there is DVA do not go away. Are not grown out of. Abusive parents don’t cease to exist when you grow up. Neither do the myriad of complex issues which can also exist in ‘chaotic’ families and can accompany DVA (NB. not always though, of course). Mental health issues, substance misuse, addiction, poverty, co-existing child abuse, emotional harm or unavailability. Whether they have been caused or exacerbated by the experience of DVA is an open and individual question.
The term ‘lived experience’ feels inadequate when thinking about child survivors who are no longer children but are still actively dealing with these issues, ongoing. What about those who are dealing with ongoing abuse, or parents continuing to be in abusive relationships. The past tense doesn’t resonate here. It’s not about what has been ‘lived’, ‘survived’. It is their family reality.
When we discuss ‘lived experience’ we really need to recognize that many adult child survivors of DVA are still living and breathing the ripples of it. Distance is impossible.
When we talk about being ‘trauma-informed’ are we really expecting/including the possibility it could be continuous, reoccurring?
The past tense ‘Lived’ experience gives a reassuring distance between us as adults, as professionals, as researchers, from the trauma. Problematising this would also require us to face up to the pitiful lack of services for adult child survivors of DVA.
I suggest that for many people affected the experience is not just ‘lived’…
it is an experience which is often alive, living.
For a helpful book on this topic see Hague, 2012
Hague, G. (2012). Understanding Adult Survivors of Domestic Violence in Childhood. Jessica Kingsley Publishers.