Dec 10, 2013
Tony Platt on Rebecca Skloot’s Life of Henrietta Lacks
Posted on Apr 9, 2010
By Tony Platt
Some of the personal revelations about the Lackses are relevant to the book’s purpose. Skloot provides vivid descriptions of the family’s initial suspicion of her motives and locates their resistance to her investigation in the long history of academic and scientific abuse of African-Americans. Similarly, she effectively makes her case for the endemic hypocrisy of the United States by contrasting the widespread and profitable use of HeLa with the enduring health problems of the Lacks family and their chronic medical indebtedness. Henrietta’s husband gets paid off a humiliating $12,000 by Bethlehem Steel for a lifetime of asbestos-related illnesses acquired on the job; three of her children suffer from tuberculosis; and Deborah is endlessly sick. “If our mother so important to science,” says one of Henrietta’s sons, “why can’t we get health insurance?”
But why do we need to know about Henrietta’s unhappy sex life, vaginal bleeding, gonorrhea and the tumors that invaded her bladder and lungs? Or that her father was a “squat man” who beat people with his cane? Or that she started having sex with (and later married) her cousin when she was barely a teen? Or that one of her children died in a state institution after weeks of “self-induced vomiting”? Or that after her death, her children were virtually imprisoned by an abusive relative who starved them and “beat them all bloody”? Or that one of her children “grew into the meanest, angriest child,” did time for stabbing a man to death, and later in life “smashed a forty-ounce beer bottle over a woman’s back and pushed her through a plate-glass window”? Or that Deborah’s cousins tried to “have their way” with her; that Deborah was molested and beaten by her guardian’s husband, then abused by the first husband, and mistreated by her second; that a son was jailed for robbing liquor stores; and that she took 14 pills a day as her illnesses mounted, and died impoverished? How do these selective facts—reported as examples of individual pathology rather than social injustice—contribute to the book’s argument?
Skloot tries to present this pandering to voyeurism and schadenfreude as an argument for plucky resistance. She resorts to an Oprah-like truism about black women as indestructible, making over Deborah into “one of the strongest and most resilient women I’d ever known.” But we are told very little about this process of survival and redemption, and the knee-jerk assertion of agency is sentimentally wishful rather than persuasive. There is nothing uplifting about watching a woman take a literal and metaphorical beating.
If Skloot is interested in addressing the structural roots of the racism, inequality, sexism, imprisonment and ill health that devastate black communities, she should look for social rather than individual solutions, and work with the Lacks family’s community to organize itself into an effective campaign for justice for Henrietta. It’s a start that the author helped Deborah to find out what happened to her institutionalized and abandoned sister; that she shared some of her research with the family; and that she has established a scholarship fund out of the profits of her book for Henrietta’s descendants.
These well-meaning but safe gestures are echoed in the book’s last chapter, in which Skloot skillfully lays out the “complicated” policy issues but ducks taking positions on them. Should the medical profession be required to get informed consent if a patient’s tissues are likely to be used in research? Should patients receive economic benefit from parts of their body that are used for profit? Should Johns Hopkins University take responsibility for how it exploited its patients’ ignorance and practiced Jim Crow health care in the liberal North?
“Like it or not,” concludes Skloot, “we live in a market-driven society, and science is part of that market.” Unfortunately, Deborah, who died before this book was published, is not around to say, in her own dialect of course, what she thinks about her friend Rebecca sitting on the fence and airing her family’s dirt in public. I don’t think she’d like it.
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