Defining lived experience of suicide
The following is an excerpt from a presentation delivered at the Mental Health Academy Super Summit, 2022, Sunday 16 October 2022.
It stems from discussions happening in the suicide prevention sector and evidence in the literature. This topic will be further explored in my PhD so stay tuned for more on this in the coming months.
In the suicide prevention sector, lived experience is inconsistently defined. Usually organisations define this as a personal experience of suicide such as;
having directly experienced thoughts of suicide,
made a suicide attempt,
cared for a loved one who is suicidal, or
lost a loved one to suicide.
This last one is often referred to as being bereaved by suicide. But lately there has been some who have asked the question, what about people who have experienced suicide in their job? Or have a lived experience that is not covered by these narrow and specific definitions? Some organisations like Suicide Prevention Australia, add on to the definition “touched by suicide in any way” and this has been a bit contentious, particularly with those bereaved by suicide, as they feel nothing can come close to understanding suicide without having a profound personal suicide loss.
So who gets to decide what a lived experience is? At the moment, it is organisations. Your organisation might have defined lived experience or maybe they haven't. If you look at lived experience job opportunities or key documents, you might see that organisations specify their own definition or refer to well known ones such as the definition by Roses in the Ocean, or the recent Aboriginal and/or Torres Strait Islander definition published by the Black Dog Institute. But who do you think should decide? Do you think organisations should set the definition and those with a lived experience should either fit into them or not?
Research has attempted to capture what people with lived experience think about these definitions and what it tells us is that definitions are important to people. There has been an interest in research that seeks to understand a suicide exposure continuum as it relates to bereavement. A continuum approach might go a little way to capturing the people like frontline workers and health professionals who are exposed to suicide and experience profound impacts. It also attempts to capture those who lose people to suicide who are further out on the social closeness scale and also describes why some people experience long-term and profound grief while others are able to return to some level of normal quicker following a suicide loss.
Some people that we speak to say that definitions are narrow and constricting and not necessary at all for this work. At CriticLE, we give the power back to people who identify themselves as having a lived experience. We believe that it is up to the individual to define and describe their lived experience in the way they choose and it is their right to say whether or not it constitutes a lived experience.
Lets jump straight to the voice of lived experience. Roma says:
“I'm not a great fan of binaries. They tend to perpetuate denial and overly simplify reality. There are clinicians with lived/living experiences of suicide. They are one of 'us' and also one of "them". How do clinicians engage with their "own", let alone us "others" ? The answer symbolises the nature and extent of the problematic culture”.
- Roma Aloisi, Lived experience advocate.
When I fill in a form that asks me which lived experience bucket I fit into and they don’t allow multiple choices, it is really hard to pick just one. This is really common! Having a previous lived experience of suicide is a risk factor for suicide and so it makes sense, that once you start collecting, its hard to stop! For me, having survived a suicide attempt was my induction into the world of suicide. Next up, I found myself supporting my partner who also attempted suicide. So I went from attempt survivor to carer and now the two experiences are integral to what I know about suicide. This is the intersectionality of experiences. How do these individual and narrow definitions intersect and change the way a person with lived experience uses their voice? We need to start having this discussion.
Next up in Roma’s quote is the way identities are formed. In the push for lived experience engagement, we have created an “us” and “them” dichotomy but the truth is, we are so much more than just our lived experiences. When we over define our experiences, we make them our identities and I have found that in the sector, people are increasingly being called “lived experience people”. By doing this, we make the sole contribution of people with lived experience, their lived experience when the truth is, they are so much more than just the story of their brush with suicide.
This moves into the next issue, and perhaps an alternative one that we need to have a sector discussion about. Recently I was talking to a leader in a mental health organisation about how to increase the number of people with lived experience in leadership roles that are not designated lived experience roles. They said “I have a lived experience and I'm in a leadership role” but they are yet to publicly disclose a lived experience and openly draw on this in their work. I am sure you know many people who are in the same position. Lots of us come to this work because we have lived experience but get roles that do not specifically require us to draw on our experience. Back to Roma’s quote, how do we enable clinicians to connect with their lived experience and bring it to their work? This is complex and probably comes back to dominant and unsaid cultures about “I am the expert and can't show vulnerability in my work”. We need to be talking about this in practice.
