How Digital Storytelling Can Enhance Health Training, Research, and Advocacy: An Introduction

Editor's Notes

1. INTRODUCE SLIDE: Rather than going over in our principles for ethical practice in Storywork in detail, I’m going to define each one very briefly and then let interested participants look later at the material on our web site, which can be accessed at the bottom of the slide. FIRST BULLET POINT: The first principle centers on storyteller wellbeing. I’ve included a link to a nice article about our work some years ago with Ugandan women who have experienced obstetric fistula, which really highlights the concrete benefits to participating storytellers. This principle is a way of expressing that we believe that storytellers’ physical, emotional, and social wellbeing should be at the center of all phases of a project. Facilitators should have the ability to meet/work with individual participants where they are. A quick example of this is offered by the Syriaza experience, in terms of the decision to support survivors of human rights abuses in narrating their lives holistically and not merely recounting their suffering. SECOND BULLET POINT: The second principle expands conventional practices for requesting “consent” from storytellers, by: - Providing them with the information they need to make choices about participation and release of materials, particularly in terms of protecting their safety and dignity; - Supporting them in making decisions they feel good about, regarding the content, production, and use of their work; Making sure they understand they have the right to withdraw their stories from public circulation at any time, recognizing the technical constraints of removing digital material from electronic forms of distribution. Basically, consent must be viewed as a process, not a one-time activity. THIRD BULLET POINT: The third principle centers on the multiple connotations of knowledge production and ownership. In other words: Storytellers have the right to represent themselves as they see fit, in the language they prefer to use and with images of their choice. They should be provided with the space and flexibility to describe their own experiences within the parameters or thematic concerns of a given project. Alice’s experience offers a good example of how we approach this topic. My co-facilitator at the workshop spoke with her at length, during the workshop, about her memories of learning the origins of FGM, about her decision to protect her girls from the practice, about her advocacy work. Allison, the co-facilitator, then worked with her to identify what would make the greatest impact with local audiences in Northern Kenya. FOURTH BULLET POINT: The fourth principle emphasizes the need for local relevance. An example here is the approach used by Syriaza, to find interpreters. Rather than going with professional Arabic-English interpretation, they reached out to a Syrian immigrant / refugee rights organization based in Spain and brought them in. This allowed for a high level of trust, in the interpretation, even if it wasn’t always as thorough or quick as it might have been with trained interpreters. In this case, the trust piece was much more important, given the subject matter and the sensitivity of some of the stories that were shared. The link here is to an article about our work in 2011 with survivors of Gender-Based Violence in Nepal, which took a similar approach, working with young women university students, as interpreters, who were age and gender-peers with the storytellers. FIFTH BULLET POINT: The fifth point I think is self-explanatory. It’s meant to underscore that ethics must be understood as a process that involves ongoing dialogue among storytellers, facilitators, and project partners about how best to design and implement an ethically responsible project, in terms of goals and objectives for WHY a storytelling approach is desired. SIXTH BULLET POINT: And finally, the last point addresses what happens to stories after they’re created. Our view is that story distribution should be rooted in the needs of and designed to benefit local communities first and foremost, rather than serving the agendas of distant viewers, organizations, or funders. NEXT SLIDE