Ibram Kendi writes, “We are surrounded by racial inequity, as visible as the law, as hidden as our private thoughts. The question for each of us is: What side of history will we stand on?” (How to Be an Antiracist, p. 22).
In preparing to teach population health nursing and health policy and politics again this coming academic year, I am working with the good folks at StoryCenter to develop media literacy content utilizing digital storytelling videos. And, since our University of Washington Health Sciences Common book will be Kendi’s How to Be and Antiracist (not to mention the current moment in terms of racism in our country), I plan to use digital storytelling focusing on racism and bias in nursing and health care.
Nurstory, working with StoryCenter, has some excellent digital storytelling videos by nurses across the country, including nurses with the Nurse Family Partnership. Dr. Raeanne Leblanc and her colleagues at University of Massachusetts, Amherst, completed a Nurstory project on social justice. My plan is to work with our students on the use and making of digital stories related to racism and bias. Since I believe that I should practice what I preach (or teach in this case), I recently made a digital storytelling video on my experience of racism in various aspects of nursing, including nurse education. Titled “Relics,” here it is:
“I want people to think of me as being this thirteen-year-old little girl that raised myself on the streets and survived through a lot of stuff like the Green River Killer, and other people that were crazy and through me shootin’ dope and never died. Cleaning up my life and having my kids and doing the best I can do.” Erin Blackwell, street name “Tiny” in a 2014 interview with the late master photographer Mary Ellen Mark (1940-2015)
I am revisiting the story of Erin Blackwell, a Seattle woman who, as a then thirteen-year-old prostituted teen in downtown Seattle, was the focus of an influential documentary and accompanying book on the “street kid” phenomenon of the 1980’s: Streetwise(1984) by Martin Bell (documentary) and Mary Ellen Mark (book). I also am revisiting and extending my thinking about the complex ethics involved in storytelling, whether that is through photography, film, or—in my case—writing.
Specifically, I am wrestling with the ethical issues involved in my research and writing of my current Skid Roadbook project’s chapter, tentatively titled “Streetwise” (now retitled “Threshold”) and based on the story of Tiny. Since my book project is a narrative history of homelessness and health in Seattle, all of my previous chapters have focused on the story of a ‘real life’ Seattleite who lived and/or worked at the intersection of health and homelessness. But all my my main characters up until “Streetwise” are now dead. The fact that they are dead obviously does not let me off the hook from being respectful of who they were as people—respectful of their memories and their legacies, including living relatives.
But Tiny—Erin Blackwell, who is very much alive and still living in the Seattle area. How do I go about ‘using’ her story as the basis of exploring the complexities of the homelessness crisis—particularly the youth homelessness crisis— in our nation and in Seattle in the 1980’s and 1990’s?
Since I moved to and began my work with Seattle homeless youth in 1994, I have come to know a fair number of the homeless youth depicted in Streetwise. I’ve also worked with social workers and other care providers who were involved in one way or another with Streetwise. Thus, I am privy to insider information, much of which is not in the public domain. That, I know, will not make its way directly into my book but it will end up in it at least indirectly. I have completed ‘official’ oral history interviews with the health and social care providers. I’m still wondering whether or not I want to try to interview Erin for this chapter. Somehow it does not feel right to ask her to expose herself more than she already has.
More information on Streetwise and “Streetwise Revisited: A 30-year Journey” exhibition in fall 2016 at the Seattle Public Library can be found at Seattle University’s excellent Project on Family Homelessness website.
Once upon a time, as a child living on land in Virginia where the Powhatan had lived, I dressed as an Indian princess—Pocahontas most likely—and tried to learn to paddle a canoe, silently, “like an Indian.”
Once upon a time, as a young teenager, I was dressed in white flowing robes and a feathered Indian headband, paddled out into the middle of the James River at Jamestown at night (amidst a raging thunderstorm), and brought back to the bonfired beach as the Spirit of Chanco to the amazement of the group of Episcopal Church campers gathered there. Even more bizarrely, I was then blindfolded, placed in the back of a white-painted hearse, and roughly driven around Surrey County as some sort of initiation into the inner circle of place. Writing that now, I see the echoes of the KKK—although, of course, I was the ‘wrong’ gender for that. Ironically, the ‘real’ Chanco was male.
Once upon a time, quite recently in fact, as I was writing a book chapter about Chief Seattle’s daughter, Kikisoblu, also known as Princess Angeline, she began to appear to me in dreams. Her voice whispered—okay, sometimes yelled—over my shoulder as I tried to honor her story. Her story, at least as I have heard it, is layered with the stories of so many other Native American girls and women who have lived with—and in too many cases, died by—gender-based violence. Honor their stories.
My own heritage is white European- American and not Native American. I recognize the danger inherent in cultural appropriation and the long tradition of “stealing stories.” I also recognize the responsibility of using my privilege as a white academic writer to amplify stories and voices.
Abigail Echo-Hawk, Chief Research Officer for the Seattle Indian Health Board, states: “I always think about the data as story, and each person who contributed to that data as storytellers. What is our responsibility to the story and our responsibility to the storyteller? Those are all indigenous concepts, that we always care for our storytellers, and we always have a responsibility to our stories.”
Echo-Hawk goes on to talk about what she decided to do with the results of a CDC-funded 2010 study on the experience of sexual violence by Seattle-area Native American and Native Alaskan women. She states, “The Seattle Indian Health Board had decided to not publish this information because of how drastic the data was showing the rates of sexual violence against Native women. There were fears that it could stigmatize Native women, and that would cause more harm than good. But those women had shared their story, and we had a responsibility to them, and to the story, and I take that very seriously.”
Stories beget stories, so be careful of the ones you tell—or listen to or share.
This past week I was a participant in the StoryCenter‘s webinar “Defining Compassion in Nursing” based on the Nurstory digital storytelling project founded by Dr. Sue Hagedorn from the University of Colorado School of Nursing. I was intrigued by the title of the webinar as well as by the opportunity to learn how digital storytelling is being used in nursing education and advocacy.
Digital storytelling (DS) refers to short video segments (typically 3-5 minutes in length) personal narratives that incorporate digital images, music, and voice-over narration by the person making the video. They are typically created within a workshop-based process that includes a Story Circle to share, critique, and refine stories-in-progress. Developed in the early 1990s by media/theater artists Dana Atchley and Joe Lambert and promoted through their StoryCenter (formerly the Center for Digital Storytelling), DS has been used for public health research, training, and policy campaigns (such as the powerful Silence Speaks global women’s health/human rights campaign); community building (such as the now archived BBC Capture Wales program); literacy programs; and reflective practice with health science students. DS is increasingly used as an innovative community-based participatory method that is especially effective at informing program planners and policy makers about the lived experiences of marginalized people.
Besides the fact that not all stories can or should be told in a nice, neat, linear 3-5 minute format, there are numerous ethical issues to consider. A brief overview of some of the ethical issues with DS is included on the StoryCenter website under “Ethical Practice in Digital Storytelling.” And, with their permission, here is an excellent overview by Kelsen Caldwell (formerly in the University of Washington School of Medicine, Health Sciences Service Learning and Advocacy group) of ethical considerations of storytelling in health advocacy work with communities: “The Ethics of Storytelling.”
I have worked with groups of people experiencing homelessness, as well as with health science students working on community-based service-learning projects that include homeless people, and have helped them to make some of their own DS videos. I completed a participatory digital storytelling video workshop in August, 2015 with a group of homeless youth through the Zine Project Seattle (sadly, no longer in existence). With their permission I share links to two of their videos here: “Harm Reduction is Good” and “Tug of War.”
I have concerns about how empathy and compassion are defined by nursing and how we as nurse educators have our own unpacked, unexamined, uncritically looked at stories of what nursing should and should not be. Who gets to decide what is a “proper” nurse story of compassion? Shouldn’t it more properly be Nurstories instead of the singular Nurstory? That said, after viewing all of the DS videos on the Nurstory website, I am struck by how powerful and even subversive several of them are. Rawaih Faltatah’s “Circle of Care” is an ode to her older sister, a nurse, and the effects of her caring and compassion on her own life and choice of a career in nursing. A more difficult to watch and listen to, yet subversive and important DS video is “Invisible Touch” by Kate Clayton-Jones.
“Stories matter. Many stories matter,” states author Chimamanda Ngozi Adichie in her powerful TED talk “The Danger of the Single Story.” Adichie points out that listening and clinging to a single story—about a person, a place, a situation—creates stereotypes, and, in her words, “the problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story.” She goes on to say, “The consequence of the single story is this: it robs people of dignity; it makes our recognition of our common humanity difficult; it emphasizes how we are different rather than how we are similar.”
I thought about Adichie’s wise words earlier this week as I moderated a hospital-based panel discussion on service provision and community advocacy to end commercial sexual exploitation and sex trafficking. The panel and the day-long training for health care providers included personal stories of survivors of sexual exploitation. None of the survivors remotely resembled Julia Roberts in the “modern Cinderella story” movie Pretty Woman, which reinforces the common stereotype of the high-class and empowered hooker. Instead, the survivors told stories of trauma and violence which both preceded and accompanied sexual exploitation.
In my introductory talk about why this topic matters, I linked to an important storytelling video geared towards healthcare providers on The Life Story website, “Medical Emergency.” I appreciate how this particular video weaves together the stories of women in their own voices. Advocacy is not about speaking for those less fortunate, less powerful, but of using our own power and privilege to amplify their voices, their stories. Our job as healthcare providers, as compassionate citizens, is to step back and listen respectfully.
Another powerful story came to me today via a colleague who sent me the link to this NYT Op-Docs Season 6 video “We Became Fragments” directed by Luisa Conlon, Hanna Miller, and Lacy Jane Roberts. Through their video, they step back, listen, and then amplify the voice and words of Ibraheem Sarhan, a young Syrian refugee now living in Canada. I love how this short video highlights the importance of competent and compassionate, trauma-informed teachers and healthcare providers. When one of Ibraheem’s teachers gives an in-class assignment to write about their family, the teacher gently points out to Ibraheem that he doesn’t have to write about his family if it is too painful a topic. The teacher must know that a bomb in Syria killed Ibraheem’s mother and siblings and left him with a shattered leg. Ibraheem tells us that when people ask him about his visible leg injury, “they don’t know how much my heart burns when I tell my story.”
Stories matter to the teller and to the listener. What we need more of in this world is for all of us to increase our capacity to listen to a multiplicity of stories and within those stories to recognize our common humanity.
The commodification and co-optation of stories—of individuals and communities—is something I have been thinking about lately at both a personal and professional level. Personal, as I reflect on the various critiques of my medical memoir, Catching Homelessness: A Nurse’s Story of Falling Through the Safety Net(Berkeley: She Writes Press, 2016). And professional, as I walk through the medical center where I work and notice the larger-than-life patient testimonials (read: advertisements) for the medical care they have received—and read the various gut-wrenching personal stories of people who will be adversely affected by the current Republican-led efforts to “reform” our healthcare system.
In addition, I am thinking about this issue as I finish final writing and editing of my next book manuscript, Soul Stories: Voices from the Margins. The following is an excerpt from the chapter/essay “The Body Remembers”:
“Telling the story of trauma—of survival—may have the capacity for at least aiding in healing at the individual level, but then there is the added danger, once shared, of it being appropriated and misused by more powerful political or fundraising causes. Stories can be stolen. Arthur Frank calls these hijacked narratives. “Telling one’s own story is good, but it is never inherently good, and the story is never entirely one’s own.”
An intriguing example of a stolen story is the one included in Rebecca Skloot’s narrative nonfiction book The Immortal Life of Henrietta Lacks, which tells the story of the “stolen” cervical cancer cells from an impoverished and poorly educated black woman in Baltimore in the 1950s—cells that scientists at Johns Hopkins University Hospital subsequently profited from through the culturing and selling of HeLa cells—cells which killed Henrietta Lacks and cells which neither she nor her family members consented to being used and profited from. Skloot, a highly educated white woman, has profited from the use of the Lacks’ family story, although she has set up a scholarship fund for the Lacks’ family members. I am reminded of the proverb that Vanessa Northington Gamble shares in her moving essay, “Subcutaneous Scars,” about her experience of racism as a black physician. Dr. Gamble’s grandmother, a poor black woman in Philadelphia, used to admonish her, “The three most important things that you own in this world are your name, your word, and your story. Be careful who you tell your story to.” (From “Subcutaneous Scars” Narrative Matters, Health Affairs, 2000, 19(1):164-169.)
See also my previous blog post “The Commodification and Co-optation of Patient Narratives” from February 11, 2011. Re-reading this blog post, I remembered that it was deemed too controversial and critical by a university librarian to include on our narrative medicine university-sponsored blog site (now inactive—the library blog, not the librarian).
A few weeks ago I was asked to participate in a University of Washington Health Sciences fall kick-off event focusing on homelessness and health. This is, of course, where I work, and I was being asked specifically because they chose my medical memoir, Catching Homelessness, as the Health Sciences Common Book for Academic Year 2016/17. That is both an honor and a responsibility that I take seriously. So when they asked me to do a reading from my book for the event, I agreed. Then, the event organizer asked me to read a section of my book specific to the lived experience of homelessness. I decided to read a few passages from the pivotal chapter titled “Catching Homelessness,” about the time I had spiraled into a deep, dark depression that almost took my life. “Okay, sure, I can do this,” I thought to myself as I prepared for the talk.
It is one thing to write about some of one’s rawest, excruciating, and stigmatizing life events. It’s another thing to share that writing in a book that is published and read by people, including by many of my students and colleagues. But—as I discovered—it is altogether a thing in a different league to read passages about those events out loud in a crowded university auditorium.
I managed to make it through my reading without falling apart, but the next morning I wrote in my journal: “It went okay, but was a bit odd. Almost like I was some sort of display of homelessness trotted out for the students like a case study patient in medical Grand Rounds. It was really strange to just dive headfirst into the book—rip my chest open—read a few passages from when I was hitting bottom, lying on an old cot in a storage shed.”
It felt unkind to myself and unethical when I reflected on it later. Even though I tried to give my reading some semblance of a context, it ended up just feeling as if I had done a flashing freak show. Lesson learned: trust my instincts and my professional training as a writer and not be persuaded to read anything that emotionally raw.
But it also made me reflect on why as a society we seem to demand that sort of voyeuristic display. And it drew me back to a review of some of my favorite ethical guidelines on storytelling, such as these for digital storytelling on the Story Center website under “Ethical Practice in Digital Storytelling.” And here is an excellent overview by Kelsen Caldwell (formerly in the University of Washington School of Medicine, Health Sciences Service Learning and Advocacy group) of ethical considerations of storytelling in health advocacy work with communities: “The Ethics of Storytelling.”
I thought through some of these complex ethical and personal issues about the process of sharing my personal story of homelessness this past summer when I made my “Homeless Professor” digital storytelling video. It utilizes an excerpt/adaptation from Catching Homelessness and is linked here. And here is one of my favorite DS videos about homelessness by Wayne Richard: “Sofas.”
In addition to the DS videos linked above, here is a list of what I consider to be positive uses of narrative advocacy on health and homelessness—and yes, I am certainly biased in favor of the positive attributes of the first three:
Richard Kearney, in his gem of a book On Stories (Routledge, 2002), begins with, “Telling stories is as basic to human beings as eating. More so, in fact, for while food makes us live, stories are what make our lives worth living.” He then ends the book with, “There will always be someone there to say, ‘tell me a story’, and someone there to respond. If it were not so, we would no longer be human.” Kearney (Professor of Philosophy at Boston College and University College Dublin) also points out that all of us are in search of a narrative, a story–not only to try and make sense of this messy thing called human existence/life, but also because, “Our very finitude constitutes us as beings who, to put it baldly, are born at the beginning and die at the end.”
But on to this year’s World Storytelling Day theme of wishes. Wishes, as in the fairytale line “I’ll grant you three wishes”? Or wishes as in the Five Wishes healthcare end-of-life (end of the story) advance directives advocated by the U.S.-based group Aging With Dignity? The line ‘if wishes were horses’ kept coming to me this morning as I fished for wishes–for the meaning of wishes–for stories about wishes–in my head (pre-coffee).
The saying or maxim “If wishes were horses, beggars would ride” seems to be of Scottish derivation, first recorded in the 17th Century. It was–and is–an admonishment for hard work instead of ‘useless’ daydreaming/wishful thinking. It was used as a heading in copybooks for British schoolchildren to practice their penmanship with by ‘writing this out 100 times’ or whatever their schoolteachers had them do.
“With the Hopes that our World is built on they were utterly out of touch,
They denied that the Moon was Stilton; they denied she was even Dutch;
They denied that Wishes were Horses; they denied that a Pig had Wings;
So we worshiped the Gods of the Market Who promised these beautiful things.”
Tell a story (not a lie) today to a child or someone ill or dying or to a random person in your life who needs to hear a good story. Or to yourself. About wishes. About dreams (of the moon as cheese). About what it means to be human.