Henrietta Lacks

I recently listened to a talk given by Karla Holloway at Georgia Tech University.  In her talk, Holloway discusses Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, now destined for HBO, courtesy of Oprah Winfrey and Alan Ball.  In her book trailer, Skloot herself confirms that it is the characters that basically make this science book readable and riveting to a general audience.  Henrietta Lacks, known by the medical/science industry as HeLa, was a poor black tobacco farmer whose cells were taken without her knowledge in 1951 for developing what we now know to be the vaccine for polio and the central tools for cloning, gene mapping, in vitro fertilization, and more.  Her cells have made billions of dollars but her family, then and now, do not have even health insurance.  The story is now widely known and was even dramatized/re-mixed by one of the Law and Order episodes.  What Skloot’s book does though is take us deep into the interior of this family, putting her, rightly so, in the direct line of Holloway’s fire.

In her talk, called “Henrietta Lacks and the Ethics of Privacy,” Holloway asks a compelling question: “which bodies have earned the public presumption of the right of privacy and which are available, reasonably available, for public scrutiny?”   Her own research shows that it is blacks and women who are most “readily rendered up for public storytelling,” what she calls a “persistent loss of privacy” where privacy is a “right” only granted to some audiences.  Holloway connects Skloot’s book to shows like the Real Housewives series and their exploitative representations of women, Maury Povich’s media publication of paternity cases, and Jerry Springer’s public consumption of community and family dysfunction.  She sees these media empires as the motivation and subtext for the ways in which Skloot invades and publicly showcases the lives, medical records, and stigmatized diseases of Henrietta Lacks and her family.  The most intimate medical histories are made public in this book, alongside a kind of voyeuristic unveiling of Deborah Lacks’s (the daughter) challenges with understanding medicine/science, the details of one of Lacks’s son and his time in prison, and even the amount of Deborah’s disability checks. Deborah Lacks actually dies before the manuscript was published so there clearly was none of what we qualitative researchers like to call “member checking” on the final product here.  Holloway reveals that she herself is uncomfortable in even summarizing Skloot’s book because it would mean participating in the very violation of this family’s history that the book exploits. What Holloway clearly shows here is a kind of parasitic relationship between a wealthy white journalist mining the stories and family histories of the Lacks and to brilliant fanfare given how well the book has sold and been awarded.  In sum, Henrietta Lacks’s body was “stripped” as a spectacle, first, in the name of science research, and now in the new telling that Skloot engages.   Holloway doesn’t hesitate to connect this history of violence and exploitation on black bodies in the name of academic research and public spectacle to James Marion Sims and his experiments on black slave women (Sims invented the speculum, made of bent spoons, to see inside of women’s uterus) and Katherine Stockett’s imagination of race in The Help.

What Holloway also compellingly shows me is that the focus on crafting a tantalizing, evocative narrative about black women’s bodies is rooted in historical white violence. A story is not good because it is widely read by and marketable to a general public already mesmerized by the likes of “Real Housewives,” Maury, Jerry Springer, The Help, and the general set of pathologies and dysfunction under capitalism.  This is not to say that black people do not themselves choose to offer their bodies and stories up for public spectacle, only that there is a history of white supremacy and consumption that makes this thinkable and desirable.

I am compelled by Holloway’s discussion as both a qualitative researcher and a writing teacher.  How you write, what you say, how you say it, who you talk about, and what you say/include are always deeply political and enmeshed in the ways that the culture tells you to consume black bodies. If the narratives we write as and about black women do not take as their first call of duty an unflinching critique of the unjust systems in which our bodies get defined and used, including the marketing and/or academic systems that tell/sell our stories, it seems to me that we are just being served up again as a James Marion Sims’s experiment.  Holloway has a stunning critique of these unjust systems and points us toward new directions in how we analyze, write, and talk about those systems too.