On Erasure and Fragility

February 10, 2022

Note: This blog was originally posted on my medium channel. I have since deleted my medium account and migrated all my blog posts to this website.

The purpose of this note is to describe some of my feelings around the trajectory of the concept of “health equity tourism” and contextualize it in the broader phenomenon of erasure of Black intellectual contributions in academia, and public thought generally. To foreground this discussion, I want to start by saying that as a Black transgender woman, none of the things I discuss shocked me, but I challenge all of us to make erasure less commonplace for Black women in the future.

“Health equity tourism” is defined in my paper recently published in the Journal of Medical Systems and available here. I won’t reiterate it, because that’s not the point of this note. I’d rather talk about where it came from. The phrase is powerful because it so succinctly captures something that every Black scholar can describe immediately. The reaction we got from the pre-print, and even from Usha Lee McFarling’s STAT News article (which I will address), was one of Black people, particularly Black women, and many other people of color feeling seen. It’s like they “felt” it when they read it. That is the kind of validation that means something to me as a Black scholar. In that sense, we (Black folx) all wrote that paper, because we all live that collective experience and I stand on the shoulders of elders and ancestors who came before and mentor me now. We assembled our understanding of it over careers of watching other people study our communities, extract advancement from our pain, and more often than is just, get it wrong, with damaging consequences, all under the label of “health equity”. What I contributed was the creativity to capture it, and the thought leadership to define it in “academia” with my collaborators (particularly my mentor-colleague Monica McLemore, but other people who I closely admire, Dr. Rachel Hardeman, Dr. Melissa A. Simon, Dr. Whitney Irie, scientific writer Dalí Adekunle, nurse/infirmier extraordinaire Patrick McMurray and my scientific partner-in-crime and cofounder of the E² Social Epi Lab Emmanuella Asabor).

The concept of equity tourism was something I’d perseverated over for years as a scientist. It came to a head when a JAMA article by Dr. Christopher Bennett, a reductive version of my more sophisticated and comprehensive article and a clear example of health equity tourism, discussed in a previous blog post , brought me into contact with Usha. She interviewed me for her STAT News piece, an article which really launched this discussion and brought it into the scientific mainstream. In the course of that interview, I mentioned the “equity tourism”. Usha immediately interrupted and said “Wow, that’s good, I’m gonna use that”. I made a comment to the effect I was working on writing about it myself but I didn’t exercise the agency to make it clear that I wanted to save that particular phrasing for another time. I should’ve but I didn’t. In that moment, I knew exactly what was going to happen, Usha would be given credit for it, and I would be ignored or erased. To stymie that I wrote my medium post prior to the publication of Usha’s piece so that I’d be the first “on record”, but I knew that would be futile.

I want to stop here and say that Usha has followed all of the ethical practices of her field and that she is an excellent journalist with great intentions and good execution but I am still critical of some of the choices she made and I will itemize that as I go forward. When Usha read my medium article, she made a comment over the phone “You write so eloquently, you should write my piece”. (I also have to note that I had to actively choose not to perceive this as a microaggression because of course I write eloquently, I’ve been doing this shit for years). The comment was made in jest, but I responded in earnest “Would you like to share your byline?”. She glossed over it and moved forward.

There is an irony that I want to draw all of you into, and really drive the point home. The content of the article, equity tourism, is about White researchers parachuting into equity spaces and extracting without collaboration, redistribution, or expertise. Usha has plenty of expertise, but as a white-passing journalist (I do not know her ethnicity but her presentation is such that I hazard to guess that she is often racialized as a white woman), she missed the opportunity to redistribute and collaborate with people who are directly affected by the phenomenon she was writing about. This is where we have to highlight the tension between status quo and reform. The norms in journalism are not necessarily optimized for justice. How transformative would it have been for Usha to have co-written that piece with me, the thought leader whose language is clearly what has helped the article take off (You cannot argue that the title isn’t part of what makes it catchy, though it is quite well-written otherwise).

I do not begrudge Usha for following the norms of her profession. I immediately followed up her piece with an academic article that is finally in press at the time of this note. However, throughout the process and follow-up there were other opportunities where, I submit, she could have done better. There was an interview on NPR that would have been an excellent opportunity to step back and allow me or any of the other members of the story to be present. While she can’t control who NPR has, she could have refused to be interviewed without a co-interviewee or at all. You cannot wield power equitably without courage. Some norms must be challenged. The last issue I’ll raise is that, when my supporters discussed my erasure on twitter, most of whom made it clear that it was not because of the article but the reception of people thereafter, Usha reached out to me to help process her feelings. Placing an undue burden of making her feel better about benefiting from systems that I was being directly victimized by.

I’m saying this publicly to free myself from the resentment I’ve been feeling. I’ve already started a follow-up article on the topic, and in this year I’ve already published 2 other papers and by end of year I’ll publish 5 or 10 more. I’m also glad  Usha wrote her STAT News article, and I’m glad so much discourse has been wrought from it. But the whole point of this, the article, the academic piece, the concept, is that it’s not just what you do, but it’s the process of how you do it. I’ll not pretend my ego isn’t operating in my frustrations, but I am also reminding us that we need upend the norms that will otherwise continue to erase Black women.

This has also been an opportunity for people to really step up and show support and solidarity. Dr. McLemore and Dr. Hardeman are juggernauts in health equity research and they both carved out time to support my writing. Dr. Jesse Ehrenfeld, reached out to me as editor-in-chief of the JOMS where the paper is currently in press. He was proactive with reviewers to give feedback on the paper so it could get through the peer review process in a comparatively short time.

I’m thankful for the reception of my work. No one owes us their time or interest. I want us to center principles in how we re-imagine a more just world. Honor justice over status quo, care and integrity over speed, and people over advancement. I’m learning to do that in my work so let’s learn together. And to our allies, be less fragile when you come into our spaces. Your allyship is only useful if it reduces our burden and strengthens our causes.
  • I did not rigorously edit this note for grammar so do not take this as my best writing sample. :)