Holy. Shit.
That was my feeling while reading and upon finishing this one. I wish I had been able to write my review immediately because now, having read many others, I’m at even more of a loss of how to do this one justice or best sum it up. I needed time to think about this one. It reads fast, like a thriller, though personally I found it more psychological in many ways than medical but then... those two are innately connected. How often, after all, are black, brown, female, queer, disabled, people blown off by doctors, told their suffering or pain is all in their heads?
I almost don’t feel it’s fair of me to review this because I’m in a space right now where I’m dealing with my own myriad issues and traumas with the medical system. I’m white (or as white as an ashkenazi Jew can be, which is a different discussion) but I’m female, young, impoverished, queer, and disabled. So there things I picked up and related to in this book and maybe other things that went a little over my head because of my own biases. I’m not sure. But I feel it would be dishonest not to mention this.
In reading others reviews I actually found it interesting how radically different they are. Some said not enough medical details (really?! I think these people are divorcing the medical from the psychological then and from all the other innately related aspects of race, financial status, etc) some loved the last third while others didn’t. (Me I’m in the camp that the last third- told entirely in letters, loses a little something), and lots of debate on how well this novel accomplished or didn’t it’s goal.
I was drawn in from the get go- Lena’s grandmother Toni has just died from cancer. Toni was more of a mother to Lena than her actual mother Deziree because Deziree has dealt with a mysterious jumble of severe health issues. All of this, the many medical treatments and the inability to earn enough while disabled have lead the family into extreme debt. Lena receives a letter inviting her to partake in medical research- and if she does it not only will she be paid but very generously but she will also get top notch health insurance for her mother. So it’s really no surprise that Lena chooses to do this and even to ignore the red flags that pop up early on....
So I have a few caveats just recounting the basics here. I really struggled to believe even the most dangerous medical studies would include medical insurance for family. Especially some kind of magic high end zero copay insurance. The cost of Deziree’s care alone would be enough for them to find someone else and not rake Lena (and this is a veeery real issue with work based health insurance overall. What happens when one of your workers has an extremely sick and resource intensive family member).
Then Deziree’s health issues this gets tied into the story in a way I wasn’t expecting, reality is so many women, so many minorities of all kinds but especially women, are dealing with complex and mysterious health issues and not getting what they deserve. So I’m not sure this needed to be tied into things in quite the way it ends up being. Because it may have told a wider reaching story in some ways if it hadn’t honestly. That the medical community fails black people and especially black women every single day. Even if they aren’t directly experimenting upon them.
But small critiques aside (and clearly I’m far too wrapped up in the utter brokenness of the american medical system) this book was gripping. And horrifying. And ironically I think it may have worked better for me than many precisely because of how well acquainted I am with the brokenness of the health care system. And the history. I like the juxtaposition here of this occurring in the present day, that poverty and societal issues (all so interconnected with racism) are what lead Lena into this study even though supposedly things like the Tuskegee Syphilis “couldn’t happen” in today’s world with informed consent and such. The book is proof that it can. And it does. And how much choice then did Lena or any of the other participants have when this was the only way to get out of debt and certainly the only way Lena could’ve afforded to help her mother with all her medical issues.
I’m rambling and I still don’t think I’m doing this book justice. But maybe this is exactly a sign of how valuable it is, that I’m jumping off on a thousand interrelated issues. It reads like a fast paced horror or thriller novel but leaves you with so much to think about and to discuss. I think it’d be an incredible book club pick and a really interesting book to discuss with a wide range of people because perhaps different aspects will jump out to different people. A lot of reviews seem so focused on the past but I think Giddings point is on the problems of the present or on things like my question of what does informed consent really mean if you’re in a situation like Lena’s. Is it fair to offer these kinds of monetary benefits for medical studies? So many questions here and racism in medicine is alive and well, not just a piece of history.
4 stars for the writing but rounded up as this is one of the most valuable books I’ve read in a long time for the sheer amount of questions and thoughts and issues it brings up.