X-posing Lived Experience with Brain Injury: A Photovoice Project with Long-term Survivors

Rehabilitation professionals have long advocated for gaining an insider or patient perspective on living with disability, including brain injury. This poster will provide an overview of a photovoice project with eight members of the ‘Amazing' Brain Injury Survivor Support Group in Framingham, MA, with support from the Brain Injury Association of Massachusetts and the State-wide Head Injury Program. The author co-facilitated this project with two brain injury survivors: the support group's founder and a survivor with experience with photovoice. Action research in the tradition of Kurt Lewin involves scholar-practitioners integrating science and practice in a dynamic group setting. Photovoice is an action research approach that involves asking participants to represent their lives, point of view, and experience using photographs and narratives. During the 10-week photography phase, from September to November 2006, brain injury survivors took photographs of living with brain injury from their perspective, discussed them together as a group, wrote narratives for selected images, and created an exhibit entitled “Brain Injury X-posed: The Survivor's Perspective.” Grouped into nine categories, including The Journey, Lost Dreams, Chaos, Comfort and Support, Acceptance, and Hope for the Future, the exhibit conveys these survivors' challenges, strengths, and sense of mutual support as they work to accept their different abilities and move on with their lives. The group continues to work together on on-going outreach efforts. This poster presentation will describe the project's participatory action research process and provide excerpts from the survivors' exhibit.