Connection: stories not statistics

Abstract

When health professionals and systems reduce people who survive brain injury to their symptoms and “survivor narratives” they create The Isolation Industry an industry that perpetuates a feeling of difference and deficit that caps the potential of those who they seek to help. So, how might stories disrupt this? I think the sharing of survival stories should be sexy. Not to be confused with sexual I’m talking about making lived experiences of brain injury palatable, relatable and investible. Narratives that evoke empathy, understanding and excitement eliminate stigma and end isolation. This paper holds familiar themes drawn from values consistent with research found in Brain Impairment; the importance of listening to the stories of people with lived experience of brain injury. Within the journal, I have read the work of many researchers on this topic; fancy-pants people with lots of degrees, who know a lot about brain injury. I am not a researcher; I am not an academic. I am a stroke survivor, a storyteller and a community mobiliser with firsthand experience of empowerment built through story-sharing. Sharing (and listening to) stories is important, but the challenge for health professionals is to use these stories to improve their practice and the experiences for survivors. Through their research, Tevendale and Armstrong (2015) found that when survivors shared their stories with health professionals, it improved the health professionals’ understanding of issues affecting people with lived experience and helped to refocus their beliefs of what mattered most in assisting people living with brain injury. Stories invite an emotional response and offer a narrative that likely differs from the patient history engaged by some health professionals. This work is an attempt to use my early stories to cast a spotlight on the disconnection that can occur in the rehabilitation process. By sharing these, I hope to start a conversation about the isolation that occurs for people with living experience of brain injury and how health professionals, policymakers and the system contribute to this. I want to create a dialogue loud enough to inspire you to pause and reflect on the part you could play in building a more connected rehab journey. Let us create a stronger connection; one built through stories, not statistics. The rhetoric we use and the paternalistic approach we engage reduces survivors to their disability; disempowering engagement leads to more isolation and increases mental health problems. We can change these outcomes by creating safe spaces for peers to connect and build capacity, using supportive and empowering language, recognising the wisdom people with lived experience hold, and by making collaboration, not compliance, an industry standard. I know this because I live it and it has been my journey for the past 13 years. Some of the most oppressive interactions that halted my recovery journey involved members of my healthcare team, particularly those looking after my voice. My voice was my primary vehicle for self-expression: singing. Singing was my source of escape and self-soothing. It was my financial and spiritual currency. It was who I was. However, my brain injury and lifesaving intubation resulted in unilateral vocal fold paralysis and my voice was cut off.