Saturday, 12 March 2011

The Curvature

Book Review:
The Immortal Life of Henrietta Lacks
by Rebecca Skloot

by Cara

There’s a photo on my wall of a woman I’ve never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It’s the late 1940s and she hasn’t yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her — a tumor that would leave her five children motherless and change the future of medicine. Beneath the photo, a caption says her name is “Henrietta Lacks, Helen Lane or Helen Larson.”
No one knows who took that picture, but it’s appeared hundreds of times in magazines and science textbooks, on blogs and laboratory walls. She’s usually identified as Helen Lane, but often she has no name at all. She’s simply called HeLa, the code name given to the world’s first immortal human cells — her cells, cut from her cervix just months before she died.
 Her real name is Henrietta Lacks.

– The opening words of  "The Immortal Life of Henrietta Lacks" by Rebecca Skloot:

Henrietta Lacks was a poor black woman, a tobacco farmer. She knew that something was wrong when she went to seek health care at the free “colored” ward of Johns Hopkins Hospital. She was diagnosed with a highly aggressive cervical cancer, and during her treatment — without her consent or knowledge — they cut out a piece of her. The cancer cells they cut are still alive today, are growing as I write this, are growing as you read it, are being bought, being sold, and being used for so many different kinds of research, I doubt there’s anyone who could name them all.

Henrietta Lacks died an excruciatingly painful death in 1951. And her cells have helped to develop seemingly endless medical advancements since then, and continue to develop them now. But just like Henrietta Lacks was never told that they cut out a piece of her cervix, her family was never told that here cells were still alive. The Lacks family only learned through a long series of events over 20 years later. Though those cells have made billions of dollars for various companies — both directly through the selling of HeLa to researchers, and indirectly through the selling of medicines and treatments HeLa has been integral in developing — they have not made a cent for the Lacks family. Indeed, at the time the book was written, many of Henrietta’s children and grandchildren continued to struggle financially, and several did not have health insurance to access the care that only exists because their mother and grandmother died.

The Immortal Life of Henrietta Lacks, written by Rebecca Skloot and released in 2010, is about all of this.

The Immortal Life of Henrietta Lacks is a piece of creative non-fiction, which  means that while it is entirely fact, the author heavily relies on narrative to get those facts to the reader. 

The narrative of the book alternates between the scientific history of the HeLa cells and the personal story of the Lacks family, particularly Henrietta’s youngest daughter Deborah, who was desperate to learn more about her mother and see her get the recognition that she deserves. The book is not a “feminist book” in the sense that it does not offer a feminist or otherwise gendered analysis of the events it describes — though some relatively small race and class analysis is included. But I imagine that few who have even a passing understanding of the ways that gender, race, and class intersect and operate in U.S. society could manage to read this book non-politically.

Indeed, what was done to Henrietta Lacks and her body is as impossible to divorce from her gender as it is to divorce from her race and her class. It’s impossible to separate the violation and violence of removing a part of a woman’s body — a part of her cervix, no less — while she is unconscious, and without even bothering to ask, from the continued sense of public ownership over women’s bodies and reproductive lives, black women’s especially. It’s impossible to divorce that violation from the ongoing history of sexual violence against women, and sexual violence against black women by white men in positions of authority specifically. It is as impossible to divorce her treatment from her gender in the same way that it is impossible to divorce it from the history of non-consensual scientific experimentation on African Americans or the history of slavery or the context of segregated hospital wards. It is as impossible to render her gender irrelevant just as it is impossible to render irrelevant the notion that doctors felt poor patients owed the “donation” of their bodies for scientific research as a form of payment for their care.

The point is not that they would not have stolen from Henrietta Lacks’ body if she had been a man, or if she had been white. The book presents evidence, in fact, that they likely would have. The point is that context matters, especially when at stake are not only individual senses of trust and safety, but lives. Violations don’t occur in a vacuum. This violation was committed against the backdrop of racism, classism, and misogyny, as did the ongoing violations committed against her family.

At no point is this made more clear than through the story of Elsie. Elsie was Henrietta’s second child and oldest daughter. Elsie had both cognitive and physical disabilities, and required a full-time caretaker. Henrietta was the only one available to act as her caretaker, but she had four other children, including two babies — so after years of resisting, she did what doctors told her was best and sent her to the Hospital for the Negro Insane. She visited Elsie every week until she got sick, and then no one visited her. Elsie died a few years after Henrietta.

Elsie’s story is not told within the context of the devastation that Henrietta felt at relinquishing her daughter, but rather what was done to Elsie after she was committed. It is eventually revealed that she not only lived in horrific conditions marked by abuse, and died a horrific death, but also that she was the subject of abhorrent, non-consensual human experimentation because of her disabilities and institutionalization. They drained the fluid surrounding her brain and pumped air into her skull. They inserted metal probes into her brain. She would have suffered extraordinarily. These things were done to her because she was black and disabled. Because no one ever thought that she or her family might have a right to say no. Because no one cared.

What was done to Elsie matters simply because it does. It matters because she matters. But it matters within the context of the Lacks story for the way it illuminates the climate of abuse and brutality that the violations against Henrietta Lacks were committed. These violations were far from isolated. And they were also far from extreme by the standards of the day. What was done to Henrietta and what was done to Elsie existed at two ends of a spectrum, but they were both a part of the same racist, dehumanizing system.

The cruel irony is that Henrietta’s cells, too, have been used to do highly unethical testing on unknowing patients, largely those with disabilities. Though paling in comparison to the literal torture committed against Elsie, HeLa cells were injected into unknowing, non-consenting individuals — mostly those with disabilities or serious illnesses — in order to see if they would develop the same cancer that Henrietta had. Henrietta was not just violated at the hands of this system; her violation was also used as a means to further its abuses.

Without being pedantic or even particularly explicit, Skloot beautifully weaves together these two “separate” historical stories. Overwhelmingly, the point of telling the stories of the Lacks family’s many misfortunes is not to show what evils HeLa cells brought on their lives. Though the Lackses did experience trauma as a result of their connection to the cells, it is not the direct cause of most of their problems. Rather, their story serves to reveal that a great deal of their problems did stem from Henrietta Lacks’ death — and to remind us that it was only because a woman got extremely sick and died that so many of us have had access to treatments and vaccinations that have kept us alive. It’s to remind us that while Henrietta did not donate her cells, they were stolen from her, she and her family did make an unchosen sacrifice. It’s to remind us that researchers didn’t just take a part of her — they took the part that killed her. And she, and her family, are real people. Real people whose lives matter, too.

But they have been treated repeatedly as if their lives mean nothing. As if Henrietta’s life was not worth anything. As though the horrors those cells have imposed on their lives do not matter in the face of the medical advancements. As if their mother and grandmother did not have a right to her own body, and they do not, as her descendants, have a right to it on her behalf. As though their bodies mean nothing, too — and they do not, with their frequent lack of health insurance, have the right to access the care that only exists because their mother or grandmother died.

It’s long past time that Henrietta Lack’s story was told, that her family’s story was told. For the fact that it accomplishes that vital justice, and for the eloquence and sincerity with which Skloot tells the story not only of Lacks by the history of ethics in biomedical research, I couldn’t recommend The Immortal Life of Henrietta Lacks more strongly. This is a story that needed to be told, and that needs to be read.

Sadly, it is also long past time where things could ever truly be made right. Years cannot be undone, dead family members cannot be brought back to life. But the remaining Lackses do still deserve that which has always been rightfully theirs, as well as our gratitude, though it seems that those who most owe it to them are not going to be the ones to provide it.

As promised to Deborah Lacks while she assisted in writing the book, Rebecca Skloot has set up the Henrietta Lacks Foundation, which provides funding for education and health care to the descendants of Henrietta Lacks. Again, while billions have ultimately been made from Henrietta Lacks’ stolen cells, her family has never seen a single cent from their use, and family members are often without health insurance, and without access to the funds needed to access higher education.

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