A lived experience perspective on responses to trauma

A myriad of potential harm can arise from participating in research as a lived experience expert. One of the main risks is tokenization. I worry about how my views and my language might be adopted, especially if the research framework is grounded in a traditional medical model of mental health. My concern is that my perspectives, which challenge the medicalization of distress, might be tokenized or used to reinforce the same system I’m critical of, rather than lead to systemic change.

To mitigate these harms, I do my best to ask questions before I join a research project so that I can assess the extent to which alternative frameworks are being used or considered with an open mind. In an ideal situation, I’d love to work with other researchers who are open to co-creating the research design and making room for critical perspectives.

Once I am involved with a project, it’s vital to me to know what my boundaries are (in terms of what I share and how) and make sure that I stick within those boundaries. I also believe people with lived experience have a perspective that is hard-earned. Especially in mental health research, people usually become lived experience experts because they had an experience or an encounter with a system in which their needs weren’t met or they ‘fell through the cracks’, as they say. Researchers working with lived experience experts should remember that they are working with survivors and continually reflect on what that means in terms of power dynamics, meaningful engagement and support.

“Researchers working with lived experience experts should remember that they are working with survivors and continually reflect on what that means in terms of power dynamics, meaningful engagement and support.”