Stealing Stories

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Kris W. “Wall of Distraction” Photograph on canvas. 2011—Youth in Focus/ On display at the UW School of Social Work, Seattle

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).

On (Over) Exposure

 

Version 2A 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.” 

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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:

 

 

World Storytelling Day: Wishes

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World Storytelling Day 2015 logo. Design by Mats Rehnman.

Once upon a time…Happy World Storytelling Day. Happy first day of Spring for those north of the equator and happy first day of Autumn for those south of the equator.

The theme of this year’s World Storytelling Day: A Global Celebration of Storytelling is wishes. The fun logo (shown here) for this year’s events is by the Swedish professional storyteller Mats Rehnman. What a fun job title to have!

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.

Here is a stanza from Rudyard Kipling’s poem (published in 1919 yet so very relevant today)  The Gods of the Copybook Headings:

“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.

The End.