The following is a repost from Josephine Ensign’s Medical Margins Blog. I first met Josephine a few years ago at the University of Iowa’s Examined Life conference, which she mentions in the post. She presented there on a topic I had not heard of: narrative advocacy. I’ve since read numerous examples of the genre, simply defined as stories told to move a reader to action. A beautiful example is her essay “Next of Kin,” on her work as a nurse with a homeless man, in the 2013 anthology I Wasn’t Strong Like This When I Started Out: True Stories of Becoming a Nurse, edited by Lee Gutkind and published by In Fact Books. My colleague Jim Stubenrauch and I now require this book in our narrative writing courses at the Hunter–Bellevue School of Nursing. Josephine Ensign is a nurse practitioner, a writer, and an associate professor of community health at the University of Washington School of Nursing in Seattle. My thanks to her for this post and for her ongoing work as a writer, an advocate on behalf of marginalized patients, and a teacher using narrative to help nurses tell the stories policymakers need to hear.—Joy Jacobson, CHMP senior fellow
A common definition of narrative is a story with a teller, a listener, a time course, a plot, and a point. Storytelling is as old as campfires and cave-dwelling. (The photo here is of my father telling Appalachian ‘Tall Tale’ stories to his grandchildren.) Storytelling is how we learn about our world, about ethical living, about history, about ourselves. Within the healthcare arena patients and family members tell their stories to nurses and doctors and other members of the healthcare team. It is still a truism that something between 80-90% of the information needed to make a correct medical or nursing diagnosis comes from the patient’s history, from their story.
Storytelling and story-listening are not only important at the individual patient level. They are also important at the community and public health level. Stories can be effective ways to educate and persuade the public and lawmakers on a variety of health and policy topics. Storytelling (pathos) is part of Aristotle’s three essential components of rhetoric: the art of persuasion. The other two components of rhetoric are logic/reasoning/facts (logos) and the credibility of the speaker (ethos).
Several years ago at The Examined Life: Writing and the Art of Medicine Conference at the University of Iowa, I co-led a workshop “Narrative Advocacy: Writing Lives, Making Changes.” My co-leaders were Marsha Hurst, PhD, a core faculty member in the Program in Narrative Medicine at Columbia University, and Carol Levine the director of the United Hospital Fund’s Families and Health Care Project in NYC. Here’s the abstract of our workshop, which I still refer back to as my own guide and articulation of what I am passionate about:
Narrative advocacy is the practice of using narrative competencies to advocate for improvements in care. It involves moving beyond the individual stories, to include the connections made within the wider community, and acting upon common interests in order to effect positive change in clinical care, in institutions of caring, and in health policy. In the U.S. there is a long history of health advocacy built on narratives of lived experience of illness and disability, and more recently, grassroots narrative advocacy has expanded through the use of social media. For health care providers and students in the health sciences, narrative advocacy can be a powerful avenue for engagement in health policy because it connects the unique individual experiences with larger issues. As powerful as narrative advocacy can be to engage and persuade policy-makers, it can and has been misused. It is important to have both knowledge and skills in how and when to use narrative advocacy responsibly and ethically.
This past week I had the opportunity to participate in an excellent online training “The Role of Narrative in Public Health” sponsored by the Center for Digital Storytelling located in Berkeley, California and facilitated by Amy Hill. She gave four reasons personal stories are so powerful: 1) stories are universal and typically follow a familiar structure, 2) stories are intimate and touch the heart in a way facts/figures can’t, 3) stories are honest and aren’t as slick and sensationalized as they often are in journalism, and 4) stories don’t (typically) tell us specifically what to do. The Center for Digital Storytelling uses a participatory media and group process to help people create and share their personal stories. Working in groups makes the individual stories more powerful, and the process can be empowering and healing for the participants.
The Center attends to the ethical practice of digital storytelling (would be the same for any type of narrative/storytelling work I think). They ensure storyteller well-being, use principles of cultural humility, and adhere to a set of guidelines in working with people impacted by trauma. They point out that consent is an ongoing process, that the question of story ownership and of sharing and distribution of the stories should be clearly addressed from the very beginning of the project. Amy showed us several powerful digital stories from their various projects. My favorite was on motherhood and women’s rights from their “Silence Speaks” project: Dear Ayhan by Rawan Bondogji. A perfect story for Mother’s Day. It is beautifully done.
Here are some additional narrative advocacy pieces that I use in my teaching:
- The WHO project “What’s Disability to Me” series, but especially Rachael’s story (UK nurse and her story of overcoming discrimination within the health care system including nursing school) and Faustina’s story (Tanzania).
- Joshua Bennett Poetry Slam/Performs at the White House, an amazing poem about his relationship with his sister Tamara who is deaf.