“That Time When Reading Against the Odds Book Discussion Group Tackled The Immortal Life of Henrietta Lacks”

Because tonight is the HBO premiere of the movie “The Immortal Life of Henrietta Lacks,” -featuring Oprah Winfrey as Henrietta’s daughter, Deborah Lacks – I wanted to post about the rich experience I had four years ago with Rebecca Skloot’s book of the same name. At the time I was facilitating an adult literacy book discussion group called Reading Against the Odds (RAO) at Literacy Chicago.

students hold copies of The Immortal Life of Henrietta Lacks

Reading Against the Odds (RAO) was created in 2007 by Dr. Jaye Jones* with the support of June Porter, Director of Adult Literacy at Literacy Chicago, and funded by a grant from the American Association of University Women (AAUW) for its first year. The idea was “to enhance the reading and critical thinking skills of adult literacy learners by introducing them to books that were intellectually challenging and encouraged discussion around a range of personal and sociopolitical concerns.” – Elyssa Shildneck, from the American Association of University Women (AAUW) blog.

In 2012, when Jaye became the Director of the Adult Learning Center at Lehman College in New York, I took up residence at her former desk and found a box of copies of The Immortal Life of Henrietta Lacks by Rebecca Skloot that had been donated to Literacy Chicago by the World Book Night 2012 program. A piece of paper taped to the opening flap read “Read this with RAO students!” scribbled in Jaye’s handwriting.

What follows in this post are a few things I found and was reminded of when I revisited the binder I kept during the Winter/Spring 2013 session – that time when Reading Against the Odds tackled The Immortal Life of Henrietta Lacks.

Note: The age range of RAO participants was between 18 and 70; their reading skills ranked between 1st and 6th grade levels. Even though The Immortal Life of Henrietta Lacks was challenging, all students read aloud from the text in order to practice fluency and confidence. Often, we listened to the audiobook while following along in our personal copies of the book.

from my journal notes 1/23/2013:
“After going over today’s vocabulary (agnostic, ethical, Nobel laureate, and metaphor), we listened to the audiobook and followed along from pages 6-10 of the book. Students were very engrossed, and really enjoyed the page “Deborah’s Voice”.

When it was time to discuss, the points of interest were about the differences in background between Deborah Lacks and Rebecca Skloot; what are “voodoo” and “hoodoo”? and how many people consult medicine men and women and people considered to have “supernatural powers” rather than go to a doctor? They also found it interesting to learn that during Rebecca Skloot’s decade of research, she would encounter “a cast of characters that would include Nobel laureates, grocery store clerks, convicted felons, and a professional con artist.” 

Students keep circling back to their awareness that the reason why Henrietta Lacks and her family were treated unethically is because Henrietta Lacks was:  black, poor, uneducated, rural, and a woman their words!

my journal notes from 1/28/2013:
“I wrote “The Mortal Life of Helen Lane by Rebecca Smith” on the board to see if students would notice and correct my errors, and they did. We did review and this is what students remembered:
*Henrietta Lacks was poor and black;
*Rebecca Skloot researched cells and Henrietta Lacks;
*Mr. Lacks said he remembered NOT giving permission/consent
*Medical research industry made millions of dollars from HeLa cells, the Lacks family didn’t even receive a dime;
*Deborah Lacks became sick when she learned about these things;
*Henrietta Lacks had cervical cancer and many other illnesses;
*Her cancer spread so fast and it led to her death;
*Deborah believed that Henrietta’s spirit lived on inside her cells;

Students asked the following questions, which we said we would pay attention [to] in our reading to find the answers:
*How old was Deborah when her mother died?
*Who took care of Henrietta’s children?
*Did being a tobacco farmer contribute to Henrietta’s cancer?”

from my journal notes for January 30:
“After reading the line “The Lacks children sat up in the colored section next to the projector, which clicked like a metronome through the whole movie.”(page 22), I asked if anyone knew what a metronome was. No one did, until I began to describe it. Some students realized they had seen one, before. Cheri asked if it was inside of a Grandfather Clock? And then Harrold volunteered to draw a Grandfather clock on the board, showing the mechanism that goes back and forth; while I drew a picture of a metronome, showing the mechanism that goes back and forth (one keeping the time of day, the other keeping rhythmic time).

A number of students talked about growing up on farms in Mississippi, Jamaica, and Belize. Charles dispelled the myth that all large farming families were undereducated, saying that his grandfather insisted on his children getting a college education. Harrold dispelled the myth that all blacks were exploited by white landowners in the sharecropping system. Students talked about being pushed into upper grade levels and out of high school before they were ready.”

At the end of class, Aaron came to me and asked if it was true that having epilepsy – like Henrietta Lacks’s eldest daughter, Elsie – contributed to one’s having learning difficulties. He was concerned because he is epileptic. This reminded me that Flaviano said that he was prone to seizures, I can’t remember what kind. I would like to look up some information regarding epilepsy to share with the class.”

After a field trip to a biology laboratory at Roosevelt University:

a student’s evaluation of our trip to a biology laboratory (photo by Leslie Reese)
a student’s response to my vocabulary mash-up worksheet (photo by Leslie Reese)

We were able to get the [then] Director of Education at the Epilepsy Foundation of Greater Chicago, Tracy Schultz, to be a Guest Reader/Speaker and my journal notes from that day read: “We listened to the audio book and read along from page 49-52, and then Tracy read from page 52-53 and segued nicely into First Aid and Epilepsy education [by talking about how Elsie, Henrietta Lacks’s eldest daughter, had the condition during a period when the medical community and general public was pretty ignorant about it – that being the reason why Elsie was sent away to Crownsville State Hospital].”

“She really did a descriptive job of explaining what is happening in a person’s brain when they have an epileptic seizure. She explained that there are various kinds of seizures and said that a person’s learning can be impacted as well as their memory and concentration. We learned that seizures usually last between 1-3 minutes but should not last longer than 5 minutes—this would qualify as a medical emergency. She explained identifiers and how to help.”

Epilepsy Foundation brochure

Because Reading Against the Odds was the recipient of an Innovations in Reading Award in 2012, we were fortunate to welcome National Book Foundation board member Steve Leveen as a Guest Reader/Speaker as well!  During Steve’s visit he talked about being a child and meeting Jonas Salk.  That led to some discussion about having connections to people and events before we are old enough to understand, or before history has deemed them “noteworthy” and “significant.”

copy of a worksheet I made shortly after Steve Leveen’s visit (photo by Leslie Reese)

Another Guest Reader/Speaker that year was Jesse Smith, who worked in the security department of the building where Literacy Chicago was located. (They have since moved to the Literacenter).
Some of my journal notes from his visit:

“Everyone in the class introduced themselves to Jesse Smith, and then he introduced himself to us. He talked about having earned an Associate’s degree; and that he reads several newspapers each day. He described himself as being a “voracious reader” and a “news junkie.” He talked about the importance of knowing what is going on in the world: not just about killings and violence but about science and culture. Jesse told us that he reads the New York Times every day, and that they have a section devoted to Science every Tuesday. He expressed his admiration for Rebecca Skloot for bringing the story of Henrietta Lacks to light. He said that she had performed a great service.”
“When students observed aloud that Jesse always said “quote” and “end quote” when he read sentences inside quotation marks, there was a brief discussion about quoting people, and people taking credit for other people’s sayings and work. Students drew the parallel to scientists and physicians taking credit for developing HeLa cells without acknowledging Henrietta Lacks or her family.”

clippings Guest Reader Jesse Smith brought to class from the NYTimes and Wall Street journal (photo by Leslie Reese)

Towards the end of our experience reading and discussing The Immortal Life of Henrietta Lacks, I asked Reading Against the Odds students to share the words that they now associated with the book. I wrote everything that they came up with on the dry erase board.

I would love to have published the many photographs I took of the students, Co-facilitating tutors (Tyrone Marshall, Aja Williams, Alana Toolie), and Guest Readers during this great adventure in literacy with RAO, but I hesitate to do so without having everyone’s permission/consent.

*Dr. Jaye Jones is currently the Director of the Institute for Literacy Studies at Lehman College.

Learn about The Henrietta Lacks Foundation here.


  1. This post just gripped me from start to finish, my friend. I teach adult learners for my online school, and so, so many of them just don’t want to read. I encourage as much as I can from my computer the connection between strong writing skills and a good reading regimen, but it often goes ignored. Many simply want the degree and move on. I can’t blame them for this–after all, these are people with their own kids and jobs, and they’ve taken on school to build a better life. But there is SO much to be learned in reading, especially in books such as this. You have a gift for bringing students together and make them PASSIONATE about learning through reading. I need to look up RAO and see what else you’re up to! xxxxxx

  2. Leslie, for the life of me, I don’t know why I kept tearing up while reading your post. I had to take off my glasses. Perhaps it was due to how Ms. Lacks had been exploited and how this unfair treatment impacted on her family. Maybe seeing the efforts of the participants caused me to become emotional.

    Once more, you’ve shown the importance of documenting our experiences and telling our stories. Who would’ve thought that that book discussion group and your journal entries would add to the light that has revealed another “hidden figure”!

    Keep on telling your stories, oh griot. We need them. This world needs them now like never before.

    P.S. The book is now on my TBR list.

    1. Dearest Nadine – You are an alive and sentient human being, and that may be why you were moved by the post. When I first read about Henrietta Lacks, I cried, too, and if I sit and think about her and her family for a few quiet moments more tears find their way to the surface.

      When I remember how RAO participants took to this book – how eager they were to apply their varying levels of reading and writing skills; how eager they were to discuss and think critically and tell their own stories; how everyone went on our field trip to the biology labs – that moves me as well. I’m glad I journaled and retained copies of their work. Not only was The Immortal Life of Henrietta Lacks a riveting [as well as challenging] read, it allowed us to talk about family, ethics, education, health and medicine, history, racism, experimentation, money, foundations, and law, among other things.

      Thank you, Nadine, for bringing your heart and mind to reading my posts – it makes the sharing worthwhile❣️

  3. Leslie. My husband and I read this book and found it to be an enormously important work. Your post amplified and explains the importance of the book. Why don’t you share this post at the Senior Salon?

    1. Thank you for visiting my blog, Bernadette. I love that both you and your husband have read The Immortal Life of Henrietta Lacks. Thank you for the invitation to share this post at the Senior Salon; I’ll do it.

  4. Wow. This is a great post. And great choice for the book. I have not read it but have heard amazing things about it. Thanks for sharing your student’s response forms too. I hope the movie will widen the audience for the book.

    1. I’m glad you enjoyed this post?; I loved putting it together. To your point about the movie widening the audience for the book: just this morning I was chatting with some women at the gym and one woman was saying that now she’d seen the movie she felt moved to read the book. Another woman didn’t know anything about it, but I saw her looking at the trailer on her phone as I was leaving.

  5. Leslie,
    I love your writing, but I especially love this post! You’ve illustrated the innovative, energetic and creative instruction Literacy Chicago has provided for decades. Thanks to phenomenal teachers like June Porter, Dr. Jaye Jones and yourself. And then there are the students…my heroes. Enthusiastic adult learners who show up and do the work. Thanks for an inspiring post.

    1. Hi Andrea! Thank you for your comments. You know Literacy Chicago students well – READERS PLEASE NOTE that this commenter was the Lead Adult Basic Education Instructor at Literacy Chicago for over 10 years! – and so I’m glad that this post hit the right notes with you. I’m sure that you have boat loads of stories about Literacy Chicago students – whose determination, tenacity, ingenuity, and generosity continue to be a source of inspiration. You are always welcome to share your stories here?.

  6. Wow Leslie you are undoubtedly a fantastic teacher! Firstly choosing The Immortal Life of Henrietta Lacks was a brilliant way to convey history, science, and literacy. It’s great to see these adults are improving in reading and bettering their expression. I remember how much this book affected me psychologically. I was wavering from anger, to fear, and profound sadness. It was a lot. I didn’t sleep well for a while after I read it. I’m so glad Henrietta Lacks’ contribution to science under duress is finally being acknowledged. With hopes that, Oprah’s film will enlighten more Americans to her contribution to science. Thanks for sharing this post! I really enjoyed reading about how you teach reading and how you entice those readers into comprehension and interest for a subject that isn’t easy to explain.

    1. Hi Didi! You are so right about this book being a great vehicle for getting into topics of history, science, and literacy. I had read it on my own prior to reading it with RAO; but without Dr. Jaye Jones’ suggestion, I’m not sure I would have selected it to read with the group. I think that this book wraps around so many touchstones in personal and social history, don’t you?

      When you say that this book was “a lot” – I get it! Reading, learning, and discussing – communally – the Henrietta Lacks’s story was nourishing and healing even though we all felt dismay, anger, fear, and sadness.

      I agree with you that the film will bring even more people into awareness of this important and never-ending story. I read in this Sunday’s NYTimes Magazine where Rebecca Skloot was asked about “her top HeLa-Cell Medical Advances;” to which she responded “(1) Many chemotherapy drugs; (2) Gene mapping; (3) Stem-cell research; (4) HPV vaccine; and (5) In-vitro fertilization.”

      Thank you for reading and commenting❣️Love you lots!

  7. What a fascinating story- thanks for bringing my attention to it. It was lovely to read about your class too, and touching to see the responses to your questions which shows the impact classes had in opening up new worlds for the students. I’d have loved to see pics of the class too but understand your respect of their privacy. A well timed post, for readers who can watch the film.

    1. Hi Mek – well, you know me and time?! I literally pressed “publish,” like, 2 minutes before the movie aired! Thank you for reading and letting me know you enjoyed the post – it was difficult keeping this around the 1500 word mark.

      1. I don’t get alerts of your replies, so apologies for the late response. Did you end up watching it after publishing? It is hard to keep it short and sweet sometimes, isn’t it? Who cares about word count though, if the content is good? 🙂

  8. I really enjoyed reading this Leslie because of its historical nature. Reading about Henrietta Lacks is mortifying and also reading your notes is a sort of time travel in itself. Thanks for reminding me to watch the movie too 😉

    1. Thank you, Kathy. “Mortifying” is the word! Learning the Henrietta Lacks story is painful, but becoming aware and discussing it allows some light and air to keep that anguish from festering. Speaking of time travel, HeLa has a cameo in Nnedi Okorafor’s [futuristic] novel The Book of Phoenix.

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