Maya Dusenbery’s Doing Harm was in a position to be a really important book. Dusenbery’s deep research into sexism in medicine stems from her own experience being (fairly smoothly and quickly) diagnosed with an autoimmune disorder, and then learning just how lucky she was, compared to other women in her situation.
I was excited about this book, and glad to see that Huffington Post published a fairly long essay by Dusenbery summarizing some of her findings. And then I was horrified to notice that the essay, which Dusenbery describes elsewhere as an excerpt, does not address the relationship between racism and sexism (including such important stories as the perils black women face in and after pregnancy, and the terrifying story of Jahi McMath). The table of contents and index of the book are available on Amazon; looking them over, I see that Dusenbery does mention racial bias: however, she devotes fewer than 10 pages of her 300+-page book to these issues. The index entry for racial bias is far shorter than, for example, the index entry for postural orthotic tachycardia syndrome. Without in any way reducing the importance of that specific syndrome, I have to worry about a book that focuses on it to a far greater extent than intersectionality in medical bias.
From what I can glean from the Huffington Post piece and my research on Amazon, Dusenbery’s research is good and her focus on autoimmune diseases in women is valuable.
[Since 1993, when the FDA permitted women to be included in medical research studies], the research community has largely taken ― as one advocate put it to me ― an “add women and stir” approach: Both men and women are usually included in studies, but researchers often do not actually analyze study results to uncover potential differences between the two. When it comes to pre-clinical research, male lab rats are still firmly the norm.
Dusenbery also treats some of the psychological history, starting (no surprise!) with Freud, and the range of ways medicine can dismiss [mostly] women’s symptoms:
It’s not surprising that it’s women who especially find their symptoms dismissed in this way since the typical patient with psychogenic symptoms has always been a woman. In the ’80s, researchers offered a mnemonic aid for remembering the main symptoms of somatization disorder: “Somatization Disorder Besets Ladies and Vexes Physicians.” These days, studies have estimated that up to a third of patients in primary care, and up to two-thirds of those in specialty clinics, have “medically unexplained symptoms.” And about 70 percent of them are women.
This needs additional text telling us what percentage of these women are black, or Latina. Substantial research (such as this) shows that skin color’s effect on symptom dismissal is intense and shameful. Women of color don’t only face far more roadblocks than white women in being taken seriously; they also face higher instances of some serious auto-immune diseases. In particular, systemic lupus erythematosis is known to affect black women at two to three times the rate it affects white women (and this number only takes diagnosed cases into account). However, Dusenbery’s index entries on lupus do not mention racial bias.
Trans people, by the way, merit four brief index entries, which seem to reflect no in-depth analysis whatsoever.
Judging from the quality of the Huffington Post excerpt, and Dusenbery’s well-deserved reputation, the book is probably full of excellent information, well-presented, and worth knowing. But unless everything I can determine from the excerpt, the table of contents, the reviews published on the book’s cover, and the index is all misleading me, and substantial treatment of intersectional issues is somehow present despite all the indications, Doing Harm is ultimately too flawed by privilege and bias. Anyone up for writing the book we need?