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UCSB Reads 2011: 4. Laury Oaks, Feminist Studies: An Analysis of the Author's Approach

Thoughts and Responses

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An Analysis of the Author's Approach

Comments on Rebecca Skloot’s The Immortal Life of Henrietta Lacks

Laury Oaks, Associate Professor*
Department of Feminist Studies, affiliated in Departments of Anthropology and Sociology
March 3, 2011

 

My reading is shaped from the perspective of my anthropology and public health training at none other than Johns Hopkins, as well as having done interview research in race/class residentially segregated Baltimore with Black and white folks about health-related issues. Skloot herself states that the book “raises important issues regarding science, ethics, race and class” (x), and these and other social categories – such as gender, age, ethnicity, sexual identity, and body size – are crucial to understanding how health inequalities are simultaneously linked to social inequalities.

I could not help but read this as an anthropological tale – the classic sort that has endured decades of criticism – of the white (in really classic texts, white male, accompanied by wife who received no co-authorship recognition) anthropologist who seeks to understand the exotic Other. More specifically, the trope of “salvage anthropology,” often employed by anthropologists studying Native American tribes, is present here. Skloot sets up her narrative with urgency – she must collect information before the extended family members and research sites “disappear.” She must work with “recalcitrant” “natives,” cajoling them to receive the information she needs and that she thinks they should want. We get small, curious snippets of who Skloot is: she failed her first year public high school because she “never showed up,” but then was in college biology classroom because her alternative high school was too easy when a professor wrote the words Henrietta Lacks on the board (2-3); we also learn she was married and divorced within the 10 years of this book project (7). Her quest is a personal one alongside one “on behalf of” the Lacks family. Propping up the “salvage ethnography,” with a possible excessive flourish of “innocence,” at the end of the book, the town of Clover, Virginia, actually has disappeared (305). (No one there called or wrote to tell her, and she didn’t read internet stories about it changes in rural Virginia?)

My reading brings me to ask: who is the book’s audience? It is dedicated to her family members – both biological and by law – who tolerated her own “disappearance” to research and write this book and supported her perseverance (“They all did without me for far too long because of this book, but never stopped believing in it, or me”). The Lacks family – the one that took Skloot away from her own --  is recognized in the acknowledgements, “First and foremost, I owe endless thanks to Henrietta Lack’s family . . . I feel deeply honored to have been part of [Deborah’s] life” (329). An anthropology volume appropriately titled When They Read What We Write: The Politics of Ethnography (ed. Caroline Brettell, Bergin & Garvey, 1996) takes up the audience question: how does representation change if the author thinks that the “subjects” of the book will not read it? Deborah Lacks dies before she can see the book or know of the wide recognition it is receiving.

Who else had done research on the Lacks family, with which audiences? Skloot tells us in the 1970s, Ebony and Jet ran stories about the anger at misinformation and injustice the family felt (5). The scandalous and unethical Tuskegee Syphilis experiments inevitably, and rightly so, in my view, frame how many Black folks view the politics of health research. Skloot picks up on Deborah, Henrietta Lacks’ daughter, with the “cat-like eyes” in a photo, and notices that she was “voiceless” in journalists’ stories (6). Skloot’s corrective is that DEBORAH’S VOICE begins the book proper, in all caps. Here, I must note that silence itself can be powerful resistance; the idea that researchers “give voice to” marginalized Others has been criticized by feminist researchers as a centering of researcher power and assumption that if the researcher does not act, a voice/silence does not exist. Indeed, Deborah’s “project” differs from Skloot’s: “I just want to know who my mother was” she demands (9). In anthropological terms, Deborah becomes Skloot’s “key informant.”

Skloot courts, hounds, tempts, and pursues Deborah over the course of the book, and Skoot survives the trials of daily phone calls, rejection, hostility, and going to the dangerous “research field” in racially segregated Baltimore neighborhoods and the more idyllic Clover, Virginia. Other journalists did not succeed, and the reader is told that many tried: “This is where we take scientists and reporters wanting to know about our mother. It’s where the family gangs up on them,” Sonny Lacks states (158). Skloot acknowledges Deborah as “one of the strongest and most resilient women I’d ever known. We’d form a deep personal bond, and slowly, without realizing it, I’d become a character in her story, and she in mine” (7). Is this a sisterhood? Does the reader ever learn how Deborah feels and thinks about Skloot, “her reporter”? Why is Skloot unaware of Deborah’s death until months later, missing the chance to fulfill Deborah’s wishes that Skloot “read the hard parts” to her (307), and, did Deborah mean emotionally difficult, or “hard” to understand because she is not the intended audience of this book? It is represented that Deborah dies before Skoot tells her that Clover has disappeared, too, poignantly because Clover represented Deborah’s view of heaven (307-9). In great contradiction to her mother, Henrietta, Deborah “was happy when she died” (308).

Skloot writes that she was transformed by meeting the Lacks family: “[they] challenged everything I thought I knew about faith, science, journalism, and race,” and it is intriguing to consider the selection and order of these concepts (7). Skloot positions herself as the key figure in the outcome: she declares the conclusion of the Lacks family’s “lifelong struggle to make peace with the existence of those cells, and the science that made them possible” (7).

But what would it take to arrive at this “peace”? Was education about cell biology; a trip to the underbelly of Johns Hopkins Hospital’s research labs; a trip to the terrifying institution where Elsie lived, was experimented on, and died; honorary lecture presentations by Deborah (that caused her great anxiety); and 10 years of this book project?

Or, would the Lacks family have found peaceful comfort in financial compensation; equitable access to health care; adequate gestures of recognition by powerful institutions of how their family’s genetic history has shaped scientific and health research? The made-for-Hollywood scene that Skloot I’m sure shared with the Lacks family might comfort – even if it didn’t happen – as Skloot herself implies, “. . . everyone I talked to who might know said that Gey and Henrietta never met” (66). However, Laure Aurelian, a microbiologist and contemporary of Gey’s, recalled, with vivid detail, “’I’ll never forget it . . . George told me that he leaned over Henrietta’s bed and said, ‘Your cells will make you immortal.’ He told Henrietta her cells would help save lives of countless people, and she smiled. She told him she was glad her pain would come to some good for someone” (66). Is this not the parable of the book – that the Lacks family’s suffering, and the pain of this book project too, “would come to some good for someone”? And, why does the title of the book come from this particular scene?

This brings me to other questions and comments from a feminist research point of view:

  • Does knowledge always bring power? Had the Lacks family members known about the fundamentals of cell biology, would their lives have been different? Better? Less angry? Less fearful?
  • At the conclusion of this book project, does the family know what Skloot does, that some lawyers say that the Lacks children could under Common Rule – in theory, at least – withdraw HeLa cells from all research (328)? The last paragraph of the book suggests that all the anger has been worked out, and the Lacks family would not take such a step, one that caused “every researcher I’ve mentioned [it to] to shudder at the thought of it,” including a Columbia University professor who estimated 800 billion HeLa cells underwrite his research (328).
  • What is the state of science education in the U.S. today, and how does it reflect, indeed, shape, broader social categories of gender, race, and class difference? What education/public awareness campaigns do we need to fully understand that science is not an “objective, impartial” way of knowing the world?
  • Why is the legal, moral, ethical topic of “consent” so difficult in our society? We see this very clearly being played out now at the federal level with opposition to health care reform riding on the argument that taxpayers do not want to “pay for” abortion services (HR 3, “No Taxpayer Funding for Abortion Act,” introduced by Christopher Smith [R-NJ]). Issues around sexual consent and unplanned pregnancy collide with consent over how tax money can be spent on particular budget items. Consent has figured prominently in feminist theories of oppression. Scholars argue that even when laws establish rights not everyone has access to avail themselves of those rights.
  • How can “tissue rights activists” (317) work with other activists to bring consent and use of body parts to public attention? How can we ensure that consent forms are understandable to everyone who must sign them? How can we not lose sight of the broader goal of reducing health disparities?

Skloot’s book commendably opens up many questions, and suggests actions that readers can take. Skloot set up a Scholarship Fund for Henrietta Lacks’ family, and some family members have benefited through funding for education and healthcare (http://www.nytimes.com/2011/02/05/books/05lacks.html). Indeed, we can see that as readers who have taken the time to read and discuss The Immortal Life of Henrietta Lacks, we are honoring her life, her HeLa cells, and the lives of her family members.

______________________

* Dr. Oaks earned her PhD in anthropology and population dynamics from Johns Hopkins University.  Her areas of study include reproductive politics; anthropology of health, medicine, and science; and feminist and community based participatory research.


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