Storytelling for stigma reduction: Researcher and peer reflections
In today’s post, Elise Carrotte (she/her) and Jeanette Chan (she/they) reflect on working together on the On the Same Wavelength podcast, which features people living with complex mental issues speaking candidly about how stigma has affected their lives. Elise is a psychologist and researcher completing a PhD at the University of Melbourne School of Psychological Sciences in collaboration with SANE, and Jeanette is an economist, public policy professional and mental health advocate with a lived and living experience of complex mental health issues.
ELISE
Although we have made great strides in reducing stigma for people living with mental health conditions such as depression and anxiety, stigma remains a huge problem for people living with complex mental health conditions such as schizophrenia, bipolar disorder, OCD and PTSD. Concerningly, some research indicates that attitudes are actually getting worse.
Over the past few years, I have been researching how podcasts can be used to share messages about stigma and discrimination. Podcasts are a unique medium, and can foster intimate and immersive listening experience around difficult topics.
On the Same Wavelength
On the Same Wavelength is a new six-part podcast designed and produced through my research. Each episode features real stories from SANE’s Peer Ambassadors – people with lived experience – who speak candidly about how stigma has affected their lives. The podcast aims to reduce stigma, and its impact is currently being evaluated.
The podcast was informed by a co-design study, across a series of focus groups. Participants included people with lived experience, media professionals, healthcare professionals, and people with an interest in workplace mental health. Co-designers worked together to inform the focus of each episode, storyboards, and how the podcast would centralise people with lived experience.
Storytelling and the Researcher’s Responsibility
Media engagements can be empowering for speakers – but they also have challenges. People with lived experience have spoken about issues including their stories being sensationalised or co-opted for other purposes. The storytelling process itself can also be distressing at times.
Creating this podcast required balance between authenticity of peer stories, creating an engaging episode, and staying true to the co-designers’ vision for the podcast. Prior to recording, I engaged in a clear consent process with guest speakers, providing information in advance covering the purpose of the podcast, how their stories would be edited, and their right to withdraw their podcast episode in the future. I met each speaker via phone call prior to recording, and we talked through any questions or concerns.
While scripting episodes and working with my editor, I remained mindful of the power I hold as a researcher who is using peer stories for a specific purpose. In my narration, I aimed to stay true to the key moments of each speaker’s story, whilst aligning with the storyboard and theme of each episode. Each speaker had the opportunity to listen to a full edit of their episode prior to release, and provide feedback, which I incorporated.
Working with Peer Ambassadors like Jeanette was truly a privilege, and I am honoured that they trusted me with their story.
JEANETTE
As a mental health advocate and Peer Ambassador with SANE, I have been involved with countless opportunities to share my lived experience. Sometimes I am the primary storyteller, sharing through speech or the written word. And other times, my story’s narrative is shaped more strongly by someone else – which has often been the case when I have worked with journalists.
Handing your story over to someone else to tell is always a scary and vulnerable experience. Imagine, you are entrusting your attempt at a coherent narrative of an incredibly complex and messy life to, more often than not, a total stranger. And you generally find out how your story has been told along with the rest of the world, anxiously listening, or reading and hoping that no part of it has been misconstrued or sensationalised.
Working collaboratively with Elise on On the Same Wavelength was a refreshing change. In reflecting on our experience working together, I am reminded of how grateful I felt to be genuinely seen and heard throughout the process.
I felt empowered to tell her when something was not feeling right or when I no longer felt comfortable publicly sharing an aspect of my story we had recorded. Feeling that uncertainty is one thing. Feeling fairly confident that she would listen, consider and incorporate my feedback is another. And I felt confident.
It is uncommon to feel that you can genuinely voice your needs as part of the storytelling process. For me, this podcast serves as an important example of how we can intentionally and effectively work with people with lived experience to cultivate safe spaces for them to share their authentic stories. In doing so, we can hope to provide a glimmer of hope or chip away at the stigma people living with complex mental health conditions experience every day. In the same way seeing myself in other people’s stories through podcasts has held space for me on my journey, I hope too my story has been able to do the same, in some small way, for others as well.
Listen to Jeanette’s story here.
Content moderators: Antipoverty Centre and Sue Olney