Which stories within health care are told, are shared widely, and which are not? Who holds the talking stick power to tell their stories and have them listened to? The ethics of storytelling about health, illness, and healthcare experience is an important and overlooked aspect of medical and public health ethics.
One current event case in point: The NYT editorial board published a compelling piece this past week, “How to Inoculate Against Anti-Vaxxers.” They highlight the fact that the World Health Organization has added vaccine hesitancy (or outright refusal) as one of the top ten global health threats for 2019. And they point to the outsized power of the singular (and scientifically inaccurate) stories of anti-vaxxers who use emotionally-charged personal anecdotes of the “horrors of vaccination” to persuade people not to vaccinate themselves or their children.
Not included in this opinion piece is the fact that this is a significant health equity issue since the overwhelming majority of anti-vaxxers are affluent white people (a story that needs to be told). Hence, the current event here in the Pacific Northwest of Portland, Oregon (the whitest city in the US) being the epicenter of a large measles outbreak—because Portland is a hot spot of anti-vaxxers. Washington State Governor Jay Inslee has declared a public health state of emergency over the measles outbreak that has spread from Portland into southwestern Washington State and now up to Seattle.
Something else that is not talked about—a story not told—is the fact that so many naturopaths and other alternative/complementary medicine practitioners are actively anti-vaxxers themselves and pass this on to their patients.
Nurses play an outsized and important role in educating people—especially parents—about the benefits of vaccinations. As the NYT article points out, the vast majority of parents who are vaccine hesitant are open to conversations with healthcare providers about the risks and benefits of specific vaccines. Taking the time to listen to their concerns and answer their questions—using motivational interviewing techniques—can help lead to a healthier future for everyone. Nurses and other healthcare providers can tell true stories of all the uneventful vaccinations that led to healthy children.
One of my first patients was a suffragette poet. She was 102 in 1981 when I cared for her in a Presbyterian nursing home in my hometown of Richmond, Virginia. I was a recent Harvard Divinity School drop-out working full-time as a nursing assistant, wrestling with the decision of whether or not I wanted to be a nurse. I was—and still am—a feminist. I was not sure I could be both a feminist and a nurse. Nursing seemed anti-feminist, steeped in the traditional subservient roles to which women were relegated.
I’ll call her Lillian because in my memory she stands out as steely kind and sharply intelligent as I imagine Lillian Wald, the founder of public health nursing, to have been. As a young woman “my” Lillian had met and worked with Susan B. Anthony. “My” Lillian had marched in suffragette demonstrations in Washington, DC and had written suffragette tracts and poetry and lobbied hard for passage of the Nineteenth Amendment in 1920 that finally granted women full voting rights. She never married and spent the rest of her life as a Presbyterian missionary in various African countries. Being a missionary was one of the few acceptable roles for single women at that time, along with nursing and teaching. (The drawing below is from my paternal grandmother’s 1919 college journal showing the “choices” she was considering for her life—ranging from Old Maid to Bride.)
In my research this past week I ran into an article written in 1904 in Seattle by a man named Honor L. Wilhelm. In between his serialized stories of his honeymoon to Victoria, BC, and guest articles on Native Americans, he wrote a piece titled “The Girl Alone” that made my feminist blood boil. He stated, “Motherhood is the acme of womanhood. The girl alone is a sinful, selfish, miserable, abhorred, ugly, wretched, hideous creature, whom to know is to shun and to meet is to pass by. She is an outcaste and a social parasite.” (p. 74, The Coast: Volumes 7-10, 1904)
The elderly suffragette poet I was fortunate to have had in my young adult life helped convince me that in becoming a nurse I did not have to trade in my feminist ideals and identity. I mainly worked evening shift at the nursing home. Late at night, once I had completed all my work, I sat beside her bed while she told me stories of her life and read drafts of poems she was working on. She gave me a hand-written poem which I treasure—a talisman of feminism.
A year later when I went back to school for my bachelor’s degree in nursing, I had no feminist nurse professors or role models. The sole feminist nursing student I knew dropped out of school in disgust after our first semester. I wish I had known about the work of feminist nurse Peggy Chinn and her colleagues who had just started Cassandra: Radical Feminist Nurses Network. Dr. Chinn’s work continues, including through her NurseManifest Nursing Activism Project. And the next generation of feminist nurse activists have started the Radical Nurses group.
March on. We still have so much work to do to help make our world a safer, healthier, more equitable place for all.
Someone asked me recently at a public forum if empathy has been diminishing among nurses (and nursing students). Excellent question. In my answer, I pointed out that empathy is being sorely tried and spread quite thin in our country currently. That goes for everyone, including nurses and physicians, and students and teachers. And writers.
The question was in response to my reading of excerpts of my essay “Walk in My Shoes” included in my recently published book Soul Stories: Voices from the Margins(San Fransisco: The University of California Medical Humanities Press, 2018). In “Walk in My Shoes” I explore empathy, including if it is always a good thing. Empathy is “feeling with” as opposed to the more distancing “feeling for” of sympathy.
We all tend to be more empathetic to people who are similar to us. Climbing the socioeconomic ladder can diminish our empathy for people less well off than ourselves. It becomes easier to blame the poor and the homeless for their situations. Experiencing our own significant traumas can make us more empathetic to people who have experienced similar traumas—but only if we have had the resources to heal sufficiently.
In The Empathy Exams, Leslie Jamison describes empathy as “a penetration, a kind of travel. It suggests you enter another person’s pain as you’d enter another country, through immigration and customs, border crossing by way of query: What grows where you are? What are the laws? What animals graze here?” p. 6
I like this description because it includes the cognitive dissonance, the discomforting disorientation—and humility—that come with travel and with empathy as travel. It also highlights the healthy curiosity required of successful travel, successful empathy. Empathy takes work to gain and to maintain.
Empathy cannot be taught but it can be modeled and it can be nurtured.
What is a nurse? What images of nursing do you have? What images of nursing are portrayed in the media? What images of nursing do we want in the future?
These are just some of the many questions that can—and should—be asked about the profession of nursing. No matter where in the world you happen to be living, a healthy and positive image of nursing matters. Nurses constitute the largest segment of the healthcare workforce worldwide. Valuing the vital work they do—and can do when given the chance—is important for individual and population health.
Do we really want to stay stuck with the image of nursing portrayed by the lady with the (Victorian) lamp, Florence Nightingale? Do we want to stay stuck even further back in time to the monastic orders who provided nursing care? Do we want to stay stuck in the limiting hospital-based image of nursing portrayed our slightly more evolved TV soap operas (from General Hospital) of E.R. and Grey’s Anatomy or even Nurse Jackie?
In reviewing my own—literal—images of nursing that I have collected over the years, it struck me how few I have of hospital nursing. To be precise, I only have one photograph I took of a hospital nurse and that was quite by accident. I was taking a photograph of a shiny-surfaced piece of hospital artwork and a nurse happened to be walking past behind me. In contrast, I have numerous photographs I have taken of nurses providing foot care and health education in homeless shelters, tent encampments, and even under bridges. Intrepid, empathic, fearless nurses. They are my image of what nursing is and what nursing can become. They are from many parts of the world. Here they are and I hope they give you hope for the future of not just nursing. And check out the Nursing Now program, in collaboration with the World Health Organization and the International Council of Nurses, which aims to raise the status and profile (and image I suppose) of nursing.
Art and literature are powerful teachers if we open ourselves to listen to and see what they have to say. In reviewing the books I have read and the art I have seen during 2018, there is one book and one piece of art—that combined into one creation—has been the most impactful. The theme and lessons are quite timely given our current U.S. political climate. Walls and empathy. How can we grow the latter and tear down, or jump over, the former?
It seems the answer has to do with an alchemy of open-heartedness, willingness to reach across divides, courage, creativity, curiosity (the good, not prurient kind), and humor (the good, not the dark and destructive kind). And a good pair of shoes to wear in order to do this sort of essential and hard work.
First, the book and a few stunning quotes. One of the most powerful books I read this year was literally placed into my hands by nurse and bookseller extraordinaire, Karen Maeda Allman of the Seattle indie bookstore extraordinaire, Elliott Bay Book Company. Arlie Russell Hochschild’s Strangers in Their Own Land: Anger and Mourning on the American Right(The New Press, 2016) is a disturbing yet oddly hopeful book. Hochschild introduced me to the term “empathy wall” In her words:
“An empathy wall is an obstacle to deep understanding of another person, one that can make us feel indifferent or even hostile to those who hold different beliefs or whose childhood is rooted in different circumstances. In a period of political tumult, we grasp for quick certainties. We shoehorn new information into ways we already think. … But is it possible, without changing our beliefs, to know others from the inside, to see reality through their eyes, to understand the links between life, feeling, and politics; that is, to cross the empathy wall?” p. 5
With an obvious love of language and precision, Hochschild writes:
“The English language doesn’t give us many words to describe the feeling of reaching out to someone from another world, and of having that interest welcomed. Something of its own kind, mutual, is created. What a gift. Gratitude, awe, appreciation; for me, all these words apply and I don’t know which one to use. But I think we need a special word, and should hold a place of honor for it, so as to restore what might be a missing key on the English-speaking world’s cultural piano. Our polarization, and the increasing reality that we simply don’t know each other, makes it too easy to settle for dislike and contempt.” p. xiv (emphasis her own)
That I left this book sitting on the nightstand beside my bed at home in Seattle—unread— for many, many months (the paperback version has an ominous, off-putting cover), and that I finally read it after returning from a four-month stretch of living and working in a foreign to me country (Scotland), is partly why I found reading the book a profound experience. The disorientation of reverse culture shock with its own unique opportunity to explore ways across that empathy wall back into my own culture—with a changed perspective on it—was an excellent time to read about “strangers in their own land.” I can relate to that feeling. (Wait, we have this much visible abject poverty and homelessness in this city and land of plenty with its over-the-top consumerist tacky Christmas? Just one of the questions continuously running through my head since returning home.)
This is where art comes in providing a visual and different take on the empathy wall. In London, at the Tate Modern Museum, I came across the work of the Argentinian artist Judi Werthein. In 2005, she designed and produced a sneaker, Brinco (“jump” in Spanish), that she distributed free of charge to migrants crossing the Mexico/US border. The sneakers included a flashlight, compass, pockets to hide money, and a removable insole with the map of the border area around Tijuana to Mexacali. At the same time, across the border in the U.S., she sold the same sneakers as “limited edition art objects” for $200 and donated the money to a Tijuana shelter for migrants.
The Tate exhibition of Werthein’s work was so effective because it included videotaped and written media coverage of this controversial “art activism” project, along with threatening letters she received from various people in the U.S. I lingered in this exhibition space long enough to observe a variety of reactions from museum visitors, including—of course— British supporters of Brexit.
“…manipulating our ancient fear of ‘otherness’ is a time-tested method to gain power and get wealthy, if you have a public megaphone. Well-known media personalities—and too many political candidates and officeholders—exploit a market that will yield returns as long as fear haunts the human heart, a profitable enterprise in relation to their own financial or political fortunes but one that can bankrupt the commonwealth.” p 58
My hope for 2019 is that we can individually and collectively climb—or jump—the empathy walls that surround us.
It struck me this week that curiosity—the time and space necessary for nurturing curiosity—has little to no place in our institutions. Not in the university or in our classrooms or in the hallowed halls of government or in our health care system. Instead of open-minded curiosity that can lead to innovative solutions to big problems like homelessness, we rely on snap judgements and decisions based on our close-minded, biased, preconceived notions.
Curiosity did not kill the cat. Curiosity is necessary for growth and survival and resilience in the face of adversity. Curiosity is necessary for empathy, for perspective-taking and imagination and creativity. Babies and small children are naturally curious, but as they grow up, formal education largely forces them to suppress curiosity. Students, and especially university students, are typically afraid to ask questions for the fear of appearing incompetent and stupid. We grade students based on their answers and not on the quality of their questions. University professors, including nurse educators, do not model a healthy valuing and practicing of curiosity. We are forced to specialize in a “focused area of study,” to become (or at least to pretend to be) experts with answers and not wise educators with yet more questions.
Tenelle Porter, Phd, a behavioral psychology scholar at the University of California, Davis describes intellectual humility as the ability to acknowledge (to ourselves and to others) that what we know is quite limited. She points out that university professors are not known for having high levels of intellectual humility, yet fostering intellectual humility (closely linked with higher levels of curiosity) in students leads to greater learning and later career success. In addition, intellectual humility is associated with a greater openness to hearing and considering different viewpoints—something that is sorely lacking in our society and in our classrooms.
What do old shipping containers have to do with creating community? They can be re-purposed to provide sturdy protection for indoor gathering spaces, such as one I visited this past week in London.
Pop Brixton is an indoor-outdoor community space in the heart of the ethnically diverse south London neighborhood of Brixton (of David Bowie and Eddy Grant/”Electric Avenue” fame). Built of shipping containers on a previously empty, unused city lot full of concrete rubble, Pop Brixton is an incubator for community pop-up cafes, music and art events, an alternative school, a shared office/workspace (Impact Hub Brixton), a community garden, and even a community/people’s refrigerator named Freddie.
One of the Pop Brixton design features that struck me as being most effective was its central dining hall space with large, communal tables. This space was winterized when I visited, being enclosed and well-heated with portable gas heaters. Local artists (along with children from the neighborhood) designed and made the colorful banners hanging overhead, as well as the cleverly-constructed “fireplace” at the heart of the communal space. The fireplace is made of a plywood frame/”flames” with orange paper and lights—shown below in the two photographs. There were a few people sitting around engrossed with the solo glow of their smartphones, but the vast majority of people were talking and interacting in positive ways.
Upstairs on the second floor (wheelchair accessible), was a lovely open seating area for quieter, more contemplative places for conversations (or nursing babies), surrounded by plants and more banners.
Out back on the ground floor is the community garden (near Freddie the Fridge), the school, and the office-sharing/community-building space of Impact HUB Brixton. All of the small businesses housed in Pop Brixton are independent, with the majority being owned/operated by local community members. They actively promote social enterprises as well as having a Community Investment Scheme where all members donate at least one hour each week to use their time and skills to support local causes.
One of the local agencies they support is Skye Alexandra House, a semi-residential home for vulnerable women aged 16-18 who have suffered abuse, imprisonment, prostitution, or disruptive foster care experiences. Pop Brixton supports their “Inspiring Butterflies” program, “a series of workshops that focus on personal development, life skills, awareness of sexual exploitation and domestic violence, bullying, money management, performing arts and enterprise.”
Pop Brixton is inspiring and welcoming and truly is a place where people make (positive, community-building) things happen. Out of boxes.