Bad Blood: The Tuskegee Syphilis Experiment (New and Expanded Edition) by James H. Jones.
The Free Press, Simon and Schuster, New York, 1981, my edition 1993 expanded reprint.
Adult non-fiction, 297 pages including notes and index.
The true story of the Tuskegee syphilis experiment reads like a work of fiction.
Normally I don’t read horror, but I’ll make an exception for non-fiction. This was a chilling read, made all the more horrific by the fact that it occurred in my own country in the fairly recent past. Sadly, some accounts of the racism and prejudice present in this study read like they could be happening today.
I bought this online for under $10. The design of the cover led me to think that it was a mass market paperback, but actually it’s a standard size softcover. Another surprise was the two sections of photographs in the book. They aren’t printed on photographic paper, but on the same paper as the rest of the book. These weren’t the clearest, but I doubt the original source photographs are much clearer.
Usually I have at least three non-fiction books going. One with short chapters or sections to read before bed, one for breaks at work, and one to keep in my car. The chapter length was perfect for bedtime reading, but the subject matter kept me awake. It wasn’t a topic I wanted to discuss at work either, and it was too interesting for car reading. Thus, it took me longer to read than it should have.
Each chapter title is a quotation from a primary source document or interview. The quotes are not identified, you have to read the chapter to find the quote within the context of the writing. At first this annoyed me because I found the added quotation marks excessive, but it won me over as I read, a bibliophile scavenger hunt.
While the main subject of the book is the Tuskegee syphilis experiment, we don’t get to this topic specifically until about a hundred pages in. First Jones carefully sets up the how and why. He tells us about the precursors to that experiment, and educates us on the state of medicine at the time, race relations, the intersection of medicine and race, and the particular area where the experiment occurred. With fascinating details and graphic depictions, he synthesizes a great deal of information into a highly readable account.
One horrifying aspect was the cooperation of the Tuskegee Institute. I was familiar with Tuskegee, but had no idea about this blemish on its history. Black doctors were also involved with the experiment, and an African-American nurse, Nurse Rivers, was essential to the practical continuation of the project.
However, the worst part of this experiment is not that it started. The deep South was not a good place to be a black subsistence farmer in the 1920s. The original plan included some limited methods of treatment and ineffective attempts at stopping the spread of syphilis. While even the original plan horrifies our modern sensibilities, Jones works through the reasoning and historical context to show that it was well-intended and sounded good to a wide variety of contemporary doctors and laypeople at the time.
The worst part is that this experiment then continued for the next half century and became a method of selecting promising doctors for advancements while the men, and their families, suffered, even refusing treatment for fear of losing the promised funeral benefit.
Nurse Rivers was intriguing. She was involved with the syphilis experiment for the length of the project, and did other public health and nursing work in Tuskegee also. At first, she came off as a villain, a black professional who did more than anyone else to advance the continuation of the experiment. Yet, in the chapter devoted to her (10), we see a more sympathetic and detailed portrait of a very conflicted woman, who loved her patients and gave them special treatment, but whose ownership kept them from life-saving treatment elsewhere. Much like Henrietta Lacks’ daughter, she has a multifaceted life, but this book gave a fair and balanced treatment of her.
After reading The Immortal Life of Henrietta Lacks, I wanted more general background on race and medicine. If you can stomach graphic descriptions of medical procedures, illnesses, death, and autopsies and the horrific true story of officially-sanctioned modern human experimentation, then I would recommend this book. It shows the intersection of these topics during the 20th century, since the groundwork was laid in the 1920s and the final chapter (about applications to the AIDs epidemic) was added in 1993.
Next I plan to read a happier book, The Good Doctors, and after that, Black Man in a White Coat for a 2016 perspective. Any must-read books about medicine and race I’m missing?