Telling the story of trauma—of survival—may have the capacity to at least aid in healing at the individual level, but then there is the added danger, once the story is 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.” (1)
An intriguing example of a stolen story is the one explored in Rebecca Skloot’s narrative nonfiction book The Immortal Life of Henrietta Lacks, a book that tells the story of the cervical cancer cells “stolen” from an impoverished and poorly educated black woman in Baltimore in the 1950s. Scientists at Johns Hopkins Hospital subsequently profited from culturing and selling these HeLa cells—cells which killed Henrietta Lacks, cells which neither she nor her family members consented to anyone using or profiting from. Skloot, a highly educated white woman, has also now 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,” written 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 you own in this world are your name, your word, and your story. Be careful who you tell your story to.” (2)
**The above is an excerpt from my chapter/essay “The Body Remembers” from my book Soul Stories: Voices from the Margins (San Francisco: The University of California Medical Humanities Press, 2018) page 81.
- Arthur W. Frank “Tricksters and Truth Tellers: Narrating Illness in the Age of Authenticity and Appropriation,” Literature and Medicine 28 no. 2 (Fall 2009): 185-99, page 196.
- Vanessa Northington Gamble, “Subcutaneous Scars,” Health Affairs 19, no.1 (February 2000): 164-69, page 169.