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The Importance of Lived Experience in Making Change

***There is a content warning for this post as it briefly mentions self-harm***

I am a mature student entering the 3rd year of my degree, joint honours psychology and criminology. My choice in academic study (and hopeful career path) is largely informed by my own life experiences which have and will continue to be one of my biggest strengths.  I have been in mental health services as a patient since my pre-teens and I have worked in a variety of mental health settings including inpatient forensic mental health and rehabilitation. My criminological interest was piqued after being a victim to violent crimes as an adult. All of this, as well as some conversations I have had with lecturers and peers over the last 2 years, has me thinking about the influence and importance of lived experiences in our academic and career choices, and the opportunities that lived experiences create for making change and battling adversity.

When we experience anything in life, big or small, positive or negative, we can gain incredible insight about ourselves and the world around us in a way that we would never have done if we didn’t have those experiences. It can change or set the trajectory of our lives. When we are in the correct place in our lives, our recovery, our minds to be able to pour from a cup that isn’t empty, we can find ourselves in an amazing place where we can help others and inspire change for those who have experienced or are likely to experience what we have. Perhaps even the ones who never have and never will. All equally as important.

Every system, service, or organisation needs to have the input from those who have experienced it from the other side. We need to know how the work is being perceived at the other end. It can be really difficult to collate feedback, especially the positive stuff, or see end-to-end results and we find that if no-one speaks up, what will be done is the easy thing, the cheap thing, or the well-intentioned but mismatched thing. Of course, we may be able to go beyond advice and become a part of a service or a voice ourselves and ‘be the change.’ We can inspire change by instilling more trust in others that we truly understand their predicament and that we have moved or are moving through it, showing them that it is possible or that they’re not alone. It can be refreshing and a huge learning experience for others in the service, as a user or provider, who may be stuck, going through the motions unequipped with knowledge of how to make change for the better, especially in sectors that can be particularly challenging day-to-day.

If I may give a personal example from when I worked on a psychiatric ward for forensic rehabilitation. I worked with many patients who felt as though it was staff vs patients, that we couldn’t possibly know what it was like for them, that we were only there because we were paid, and because they were detained against their will, we had to keep them there. I didn’t hide my personal experiences, my real reasons for being there, but no one really asked so I didn’t shout about them either. When the COVID-19 pandemic hit, for reasons of infection control, I had no choice but to obey a rule, ‘‘bare-below-the-elbow.’’ That meant I had to wear short sleeves on the ward. It meant revealing to my patients the scars I bear from self-harm. This prompted lots of questions, some less awkward than others, but it opened up so many wonderful conversations and breakthroughs. I spoke with my patients about knowing how that feels, that I’ve been on the medication they’re struggling with, and I’ve done the therapy they’re reluctant to try. It connected me to my patients and my work in such a wonderful way and meant my patients trusted me more, trusted the process more and engaged in ways they haven’t before. It meant that when decisions were made about patient care or ward processes, I could advocate from a place of empathy and understanding and in cases where people have their rights reduced or taken away, detained against their will, are vulnerable, are disadvantaged, we can’t do it enough.  

Being loud about our experiences means raising awareness, breaking down stigma and stereotypes to create more inclusive and accepting societies, building supportive communities, and helping people along their path. It can serve as inspiration for people who may never have even given a thought to their experiences, things they witness or people who experience hardship and keep it under wraps.

Perhaps this even serves as a little nudge to be open to the experiences of others, to recognise and challenge your own biases, the things you may or may not understand. If you find yourself in a position to decide who to hire, interact with, which project to run; find the lived experience, consider the people who just need a little more support and feel like a little risk, because you never know what it could do. We can apply this to healthcare, criminology, charity, or anything that feels like it is our calling.

It can be such a tough and slow process, it won’t always be welcomed, it might not always work out. There may be people, services and societal norms or stigma that have an agenda or goals that don’t align with yours, not everybody likes change or will be willing to put in the effort. We may not always get the answers we are looking for because of the complex world we live in. But that doesn’t mean we shouldn’t try, right?