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Deborah refused to talk to Skloot for nearly a year after their first conversation. During that time, Skloot would send Deborah updates on things she had learned about Henrietta. Finally, Deborah called Skloot and told her that she would help as long as Skloot made sure everyone knew Henrietta’s correct name, all five of the Lacks children were mentioned, and that the book told the story of all the Lackses, good and bad. Deborah emphasized that she wanted to know what happened to her mother and sister.
When Deborah and Skloot met, Skloot showed her an image from a Hopkins researcher named Christoph Lengauer. After reading an article Skloot had written for
Johns Hopkins Magazine
, Lengauer sent Skloot a photo of a gene mapping technique he’d developed using HeLa that, under a UV light, lit the chromosomes in beautiful colors. He also invited the family to visit him at Hopkins to look at the cells. Deborah thought the photo was beautiful, but noted she had more photos of HeLa cells than her mother. Nevertheless, she wanted to learn about how HeLa cells had helped people. Unlike her brothers, she had given up on any hope of making money back from her mother’s cells. For Deborah, so many of the stories about her mother and HeLa seemed so incredible that it was difficult for her to distinguish fact from fiction.
Skloot finally explained to Deborah that the blood samples McKusick had asked for were not for cancer screenings but DNA research. Deborah was frustrated that he hadn’t explained it to her and that he’d given her an autographed copy of his book that she couldn’t have hoped to understand.
The effects of Hopkins’ and journalists’ lack of transparency had left Deborah extremely paranoid, and she occasionally lashed out at Skloot. At one point, Deborah accused Skloot of trying to steal Henrietta’s medical records.
Skloot was nervous to meet Zakariyya because of his violent reputation, but Deborah assured her that he was ready to talk.
At this point, Zakariyya was near fifty and living in an assisted living facility for his partial deafness and near blindness. Deborah promised to watch the conversation from a distance and intervene if things got tense. Zakariyya began to rant about how angry he was at George Gey for taking Henrietta’s cells. He noted that the Lacks family couldn’t afford care and the only people who benefited from the treatments her cells created were people with money. Zakariyya believed he was mean because he had to start fighting in the womb because of cancer. He concluded that despite the good Henrietta’s cells had done, he would have rather she had been alive to take care of him. Deborah noted that most journalists didn’t want to let Zakariyya speak because he was angry and abrasive but that it was important to hear him too.
Deborah showed Zakariyya the photograph Lengauer had sent, told him she wanted him to have it. Zakariyya began to cry. Skloot explained that Lengauer wanted to meet the Lacks children and show them the cells. Zakariyya agreed.
The day after the visit with Zakariyya, a man invited Deborah to ride on a HeLa float in a black rodeo. Deborah mentioned the book, and the man told her to beware of white journalists. Lawrence agreed, and so Deborah called Skloot to say she would no longer participate. However, Deborah quickly changed her mind.
Meanwhile, Skloot and Deborah gradually became friends. They read science books together and took trips with Deborah’s children to science museums. Because Skloot couldn’t compensate the family both due to her student loans and journalistic ethics, she vowed to set up a scholarship fund for Henrietta’s descendants. Deborah believed that if she had access to education, the ordeal with HeLa cells would be less frightening.
Deborah began to google “Henrietta Lacks” and “HeLa” at night when she couldn’t sleep. Deborah explained that doctors and psychiatrists had diagnosed her with multiple conditions, and that treatments were expensive. She didn’t want to try and sue Hopkins, but she wished that she could afford the medical care HeLa helped create.
The president of the National Foundation for Cancer Research invited Deborah to speak at their 2001 conference, which would be held in Henrietta’s honor. Deborah was thrilled, and decided that she would take Lengauer up on his offer first so that she could comprehend more of the scientific discussions at the conference.
Ultimately, Deborah agreed to work with Skloot because Skloot is the first person to freely offer her the answers she had been looking for. The journalists who talked to the Lacks family prior to Skloot were not focused on who Henrietta was as a person, but in how the cells had been taken from her. In some cases, like that of the BBC documentary team, they explicitly declared Deborah’s questions and concerns to be off topic. Scientists like McKusick thwarted her ability to understand HeLa cells by not taking the time to explain the science to her, giving her answers she couldn’t make sense of. The Lacks family also didn’t like to discuss Henrietta or Elsie, meaning that Deborah’s own family kept her from learning about her mother and sister. We can infer that Deborah decided to work with Skloot in part to understand her past and her family in ways that no one would explain to her. Even before Deborah agreed to Skloot’s request, Skloot shared the stories about Henrietta that she had learned from the Lacks cousins, demonstrating her willingness to be transparent and help Deborah.
Zakarriya’s rage is significant because it reflects the unresolved trauma of the Lacks family, which is as much a part of the story of HeLa cells as the triumph of scientific research. Skloot doesn’t shy away from Zakariyya’s anger over the mistreatment of his mother and family by doctors and scientists, and his perspective emphasizes the importance of including the complex range of emotions and responses from the Lacks family despite some of them being bitter and difficult. This inclusion also demonstrates Skloot’s commitment to Deborah to be transparent and make her family part of the story, good and bad. Furthermore, Zakariyya’s anger symbolizes the long-term negative effects of mistreatment, including structural racism, which do not have easy solutions. Unlike Deborah, whose desire for knowledge and understanding makes her a likable figure for a mainstream audience, Zakariyya’s rage can be unsettling or difficult to understand, and therefore easier to dismiss. His statement that he would rather have had a mother than a world with HeLa cells may sound selfish on the surface, but reflects the deep pain he’s felt through life as a victim of abuse, poverty, and mental illness.
These chapters demonstrate how Deborah’s poor education, caused by lack of access, made the ordeal surrounding HeLa all the more difficult. Journalists like the BBC documentarians disregarded Deborah’s opinions, priorities, and concerns because she did not have formal education. Similarly, doctors and scientists dismissed her or treated her with condescension, and did not provide the information she had a right to as Henrietta’s daughter and as a person. We can infer that this lack of transparency about science and medicine from researchers contributed to Deborah’s confusion and stress because she had no experts to trust or turn to. Deborah had a difficult time distinguishing science fiction from science fact because it all read as fantastical to her, which added to her stress because she believed terrible things continued to happen to her mother through the experiments on HeLa cells. Deborah’s belief that Henrietta’s cells felt pain also underscores that for Deborah, there was no clear distinction between her mother and HeLa cells, both because of the emotional connection and because of her scientific illiteracy. At the same time, Deborah’s conflation of her mother and the HeLa cells is a symbol of Henrietta’s personhood and the importance of acknowledging this personhood.
Even after they establish a friendship, Deborah has a difficult time trusting Skloot because of her traumatic history. Skloot struggles to earn and maintain Deborah’s trust, but her refusal to give up and her consistency in honoring Deborah’s wishes, especially in sharing information with her, demonstrates Skloot’s ethical convictions as a journalist. Skloot does not blame Deborah for mistrusting her, partly because their friendship also applies pressure on Deborah’s relationships with her family members. Deborah faced the disapproval of her brothers over working with Skloot, which put her in the difficult position of balancing her own desire to learn about her mother with the pain and fear her family has suffered as a result of Henrietta’s death and ongoing mistreatment from medical, scientific, and media professionals. As a white journalist with a science background, Skloot looked and sounded a lot like those who had hurt the Lacks family before, which justified their suspicion and put the onus on her to earn their trust.
Ace your assignments with our guide to The Immortal Life of Henrietta Lacks!