My lived experience is valuable, and I know that; I am someone who will not let other people knock down my values, I am confident that what I have to say is important and meaningful. But to the organisations that want it, the value of my lived experience is dependent on its social acceptability.
Once, I was a care leaver sleeping under a bus stop with a carrier bag of clothes. But this lived experience alone is not valuable. It is given value because I now have secure housing and a mortgage. Because I am intelligent and educated to degree level. Because I am one of the 14% of care leavers who made it to university. Because I am one of the 22% of autistic people in employment. Because, despite spending ten years under secondary care mental health services, and having fifteen admissions to inpatient mental health units, I have worked in mental health services as a professional. My lived experience is valuable because I have gained power and privilege; what I have to say is perceived as meaningful because of what I ‘made’ of my lived experience, and how I am able to showcase it.
In society, these factors and other measures of privilege determine who has value, and transfer onto organisations and their employees who are able to label patients and write them off based on their characteristics. It was decided for me by professionals at a young age that I would not succeed in life, but I wanted to prove them wrong and because I did, what I have to say is more likely to be heard. I was never meant to beat the statistics, and I am lucky I did, but I am also angry: who wouldn’t be after spending years trapped in the care system and mental health system only to be failed? And when I am angry or if I swear, when I communicate differently or when I am acutely unwell — my lived experiences become less valuable.
So, for others to listen to me, I have to mask. I have to pretend I am not autistic, I have to carefully curate my language so that others listen and value my experiences. I don’t get to be me. I make myself appropriate. I make myself socially acceptable. Often, services will say they got an autistic service user to contribute to their project, patting themselves on the back. I don’t feel good when my contribution is based on masking. We know that autistic masking increases suicidality. So why should they feel good that they heard my voice, at the expense of my mental health?
I am still glad I get to share my lived experiences; it is exhausting, but I have a strong sense of justice and don’t feel able to let go. I gave up on the idea that I would be helped by services, but I made many friends in the systems I existed in, some of whom are no longer with us. I am angry, and I don’t want other people to suffer in the way I have. So, I feel I must continue. But what about the people who cannot do this? Lived experience involvement and engagement is designed to ensure service users feel understood and represented, but many of these users have characteristics that mean that their lived experiences will often not be heard or represented. For example, some autistic people, people with learning disabilities, or acutely psychotic people may not be able to communicate their views in a way where professionals will listen and understand.
I am part of some lived experience involvement groups. I observe that those who communicate their views in a way that is not perceived as intelligent leads to them being shut down. This is not fair, and lived experience involvement and engagement should be adapted to include anyone who wishes to participate. It should be an equitable experience but often is not. What this means, is that collectively as users of these organisations, we will never really get justice, as so many important views are excluded.
So, when we think about the concept of ‘us and them’ – where people with lived experiences make up ‘us’ and the organisations who ask for our experiences make up ‘them’ – we are at the mercy of ‘them’ to listen and value what we have to say. So, who decides if someone’s lived experience is valuable? I think it is them, not us.