Storytelling for Policy Advocacy

PoppyStoryTimeWhen I tell people that my work focuses on narrative advocacy, they mostly look at me funny and ask, “What’s that?” It is a more concise way of saying ‘storytelling for policy advocacy.’

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 Berkley, 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:

 

 

 

 

 

 

 

Selfie-Healthy Health Care

IMG_1897 - Version 2What does Obamacare/ACA mean to me in terms of my personal health care now that the 2014 roll-out is officially in place?

I have the same job-based health insurance through the same health insurance company that I’ve had for the past two decades. I’m sure that they have continued to raise my deductibles and co-pays this year as they have in most years, but, truthfully, I have ceased to pay much attention to those details.

The biggest change that certainly has gotten my attention was a recent mailing I received with the following highlighted in bright orange: “Premium surcharges and a wellness incentive are coming! Take action on the four steps below.” I knew these were coming and had already taken their wellness survey back in December just for grins (see blog post My New Year’s Resolution: Avoid Wellness Programs, 12-30-13). As the blog post title implies, I had planned to ignore this Big Brother naughty or nice-style intrusion on my sense of privacy, but then I read the next highlighted item on the mailing: “What happens if I don’t respond…?” Answer: I’d start being charged a $25 per month tobacco use surcharge (even though I am a never smoker) and I’d forfeit a $125 reduction on my 2015 medical deductible. Opting out this year would cost me $425. The ACA/Obamacare allows employers to offer larger health/wellness incentives, up to 30% of the cost of coverage, so my health insurance company could hike up these ‘incentives’ (penalties?) considerably in the future.

Begrudgingly, I signed onto their website to attest to not using tobacco products. Then I chose a primary care provider (who I haven’t seen in two years because she is too popular/busy/on her way to becoming another burnout statistic). Then I had to re-take their silly, non-evidence based health assessment. It still tells me I need to stop eating a high-fat diet when I’m a vegetarian. Finally, I registered for one of their wellness program activities: doing at least 90 minutes of moderate to vigorous physical activity per week for at least 10 consecutive weeks. Walking, swimming, cycling, yelling profanities at my health insurance company and our health care system…..Great. OK. Go away you silly premium surcharge/personal wellness incentive that raised my blood pressure!

Just when I thought I was done with all of that for the year, I got an e-mail invitation from my insurance company inviting me to enter a HealthieSelfie photo contest on their Facebook page. All I have to do is ‘snap a selfie’ of my wellness goals and send it to them, to what? share with all their other selfie health care absorbed health plan enrollees? The ultimate of (flat, fit, no flab allowed) navel-gazing healthism? An example of medical sociologist Deborah Lupton’s imperative of health? A fun, harmless, effective way to use social media to promote personal health (and thereby enable the health insurance company to reap more health plan profits)? Yes to all of the above.

Having never taken a selfie before, my first attempt resulted in a photo of my thumb. I find deep symbolism in that. The photo here is my second attempt, and shows me ‘doing’ my 2014 selfie-wellness goal: Less time trying to figure out our crazy health care system and more time in my garden playing with my Corgi.