Racial "care gap" in healthcare

PBS Newshour ran a great piece April 5, entitled "Is there a racial 'care gap' in medical treatment?" I especially love when Dr. Satin, one of the interviewees, summed it up: "I teach the medical students, look, it’s not your — it’s not your fault that you have these implicit biases. You grew up in society. We all have these. But now that you know, it’s your responsibility. And we have some interventions to try to reverse [these implicit biases]."

This segment was of particular interest to me because I've just been reading Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (Harriet A. Washington), and there were a lot of resonances. For instance, that whole "people of color feel pain less than white people" is apparently long-standing: it's referenced in both the book and the PBS segment.

The book was super interesting, and I would certainly recommend it--although I'd recommend it "with a grain of salt." I think it's one of those books, sort of like Gloria Anzaldúa's Borderlands/La Frontera, which are groundbreaking and true-in-sum, although less true in detail. What now? Well, the overarching narrative is broadly true; some of the specific examples are suspect, not fully elaborated, and/or undocumented and bordering on conspiracy theories.

I hate that, because it just makes the books less convincing to--and this sounds damning--"people who are sticklers for the facts" and people who just plain aren't inclined to believe you and will take any excuse not to. Anzaldúa way-the-heck overstates the length of American occupation; that doesn't mean that Hispanics/Latin@s/Chican@s should be marginalized as second-class-citizens, but it does mean that her SPECIFIC statements are not exactly literally true, although the big-picture she presents is valid.

Similarly, Washington makes some SPECIFIC claims that are a little squishy--for instance, page 235, wherein she claims that people of color, specifically people of African descent, cannot generally be treated with total-body irradiation for widespread cancer, because it is harder to find a matching bone-marrow transplant donor for them, and the TBI kills the patient's bone marrow and will kill them without a bone marrow transplant. Based on my recent reading of The Emperor of All Maladies, however, though, it sounds like this doesn't entirely hold water because one can self-donate bone marrow (e.g., it's extracted prior to your chemo or irradiation and then transplanted back into you post-treatment). My inclination is, if it's appearing in a a book written for a lay audience, she should probably also be aware of it, given her academic credentials and affiliations. Obviously I'm not a doctor, but again, if I can learn about it through a book for a lay audience and she acts like it's totally not even a reality, I am unsure if there is some reason that I'm missing that she is just not explaining, or if she's ignoring this possibility in order to hammer on her point--that black folks don't often reap the benefits of their participation in medical research/experimentation--more.

I also found her documentation to be uneven, which was a real shame. Again, I accept her premise, but it would be a much more compelling argument if I could refer to the same sources she's working from. She does footnote a lot, but often, not the things that I really needed to see cited.

And then, of course, there are gaps--intentional and otherwise--in the archival record. When the author questions the veracity of the archival record in the case of secret testing of biological or chemical agents on predominantly black communities, it is entirely possible that she is correct and that the records were not kept, were falsified, or were intentionally destroyed. I mean, I've been an archivist and I've been a (student) anthropologist, and yes, it's entirely reasonable that things that weren't considered "important," like informed consent from people of color, would not have been recorded or retained or even asked for--and the latter is her contention. But when you admit that the documentation just isn't there, it is really hard not to step into conspiracy theorizing. And I'm not saying she does, but I just wish she had more rigorously cited documents for issues for which records had not been--from her representation--intentionally destroyed; it would make the overall argument better able to bear the parts that cannot reasonably be documented due to the destruction of records.

(For more on the "squishiness" of the archival record, I would totally recommend Ann Laura Stoler's Along the Archival Grain: Epistemic Anxieties and Colonial Common Sense. And obligatory shout-out to Foucault on varieties of knowledge, including that which is discredited.)

One final wish: The book repeatedly refers to its partner website. I tried to go there, hoping I'd find more...anything. More resources, a "suggested reading" list, etc. But it looks like the website is no longer maintained--I couldn't find it, at all. (Based on what I found from Wayback Machine/Internet Archive, the site was only harvested between 2007 and 2012, so I think it's probably really and truly gone: here's one of two times the site was crawled in 2011).

So, in summary and in conclusion, high marks for drawing attention to a very serious social issue, historically and through the present day. But less enthusiasm for less-than-rigorous citing, which I guess is fair game for a book for general (rather than academic) audiences, but which I personally felt detracted from the power of the work as a whole.