By Carolyn Rouse
When Mamie Till Mobley chose an open casket for the funeral of her lynched son Emmett Till, the images of Till’s mutilated body sparked outrage and some would argue, galvanized the Civil Rights Movement. A closed casket in 1955 might have sown doubt about the extent of the adolescent boy’s torture. Without Jet Magazine’s photographic evidence, the narrative might have been highjacked to place blame on the victim. Sixty-five years later, horror generated by the unedited and uncut video of the murder of George Floyd had the same power to mobilize resistance. In both cases, the evidence of racist, systemic, anti-black violence was undeniable.
The potential of data to transform the world is why Trump signed an executive order to purge certain health data from federal websites including the CDC and the NIH. For an autocrat, these data threaten his power because they expose inequities linked to racist discretion in policing, medicine, and education. They also highlight the links between the reproduction of inequalities and generational wealth, nepotism, red lining, and the historical theft of land by the state. For a man who has contributed to and benefitted from structural racism, but who wants to be seen as a self-made business genius, these histories and data undermine his legitimacy.
In many ways, the statistical data he’s trying to hide is more of an inconvenience than a real threat to his power grab. As a petty autocrat, this is largely about ego. We know this because in 2019 he used a black Sharpie to alter the NOAA hurricane forecast to align with the false information he gave the public. While Trump sells lies and merchandise to shore up his base (which he treats more like a “consumer base” than a political base), he siphons taxpayer funds as people fight over the remains of a political project that began in the 1960s to expand diversity, equity, and inclusion. People will die because of his greed fueled, mean-spirited governance, and without data the cruelty unleashed will go uncounted, unrecognized, hidden.
This data purge hit home because I have spent three decades studying racial health disparities. As a graduate student in the 1990s, I worked on anthropologist Cheryl Mattingly’s Maternal Child Health grant “Crossing Cultural Borders.” For that work I followed black families in and out of pediatric occupational and physical therapy clinics. For treatment to be elective, practitioners and families needed to find meaning in what they were doing to develop the best long-term care. In the early aughts, I worked with sickle cell disease patients who were often presumed to be malingering or drug seeking and therefore, denied pain treatment. Now I am studying contributors to high rates of morbidity and mortality in a predominantly white rural community to compare it with my prior research on racial health disparities.
While I am a qualitative ethnographer, I have spent countless hours in the statistical data trying to interpret a single racial health disparity using CDC, NIH, and other national or state health data. Mostly I am trying to understand what a health difference means in relationship to other contextual data. There are so many variables that, in general, the causes are far more complex and nuanced than race alone.
Recently, for example, I was swimming in health data to make sense of differentials in suicide rates by race, ethnicity and region. While I know the racial and ethnic categories used in statistical research are insufficient, and sometimes beside the point, I take the data as one of many realities that need to be addressed to make substantive social change. I throw all the information I can at trying to understand health disparities because, as Autumn Womack wrote in her book, The Matter of Black Living: The Aesthetic Experiment of Racial Data, my research “emerges at the nexus of aspiration for recognition and refusal to be circumscribed within the production of racial data.”
I had no idea how attached I was to this data until I was speaking with Jax, my primary interlocutor from this community. I had avoided checking websites because something told me I might not be ready for Trump’s data purge, but Jax gave me the courage. So, I clicked on a CDC website that once had data on racism in healthcare, and the data was gone. In an instant I began crying.
As terrible as the statistical data purge is, let’s remember that the most galvanizing civil rights moments in the last 65 years – Emmitt Till and George Floyd – were inspired by stories not numbers. Cultural anthropologists tell stories for a reason. The statistical data help to understand the scale, but ethnographies have the potential to change minds by contextualizing people’s struggles. Black life has always spilled beyond the statistical data, something W.E.B Du Bois understood when he tried to make sense of the “Negro Problem” in his Atlanta University Studies. His research went much further than social surveys. He tried to represent black life in a novel, data visualizations, statistics, and ethnographic stories.
The loss of federal data showing the scope and scale of the problem is a real loss even for those, like me, who do not valorize quantitative over qualitative data. With that loss anthropologists must fight back by pushing their ethnographic research out in any available formats. The stories of LGBTQ+ folks and women hurt by anti-choice legislation need to get out. The experiences of those struggling with environmental racism, racist policing, ableist discrimination, genocide, civil war, and ethnocide need to see the light of day in a variety of genres, from analytical writing to poetry. And I encourage every healthcare institution to resist by collecting and publishing their own demographic data. We need to create a site for pooled data that the government cannot touch.
We still live in a world where disparities in sentencing, education, housing, income, wealth, and health still exist based upon people’s immutable characteristics. The elimination of data on racism and racial differences will not make the problems go away any more than the Dickey Amendment (1996) restricting federal funding for gun violence research curbed gun violence.
Instead, the response across the country has been to teach children to duck and cover if they hear gun shots in their school. Like the gun violence data, the latest purge will conceal from the public increases in morbidity and mortality. People will die from unfunded vaccine rollouts, clinics refusing services to pregnant women in distress, and untreated chronic illnesses. The majority of these victims will be black, brown, indigenous, LGBQ+, and poor. Without data and stories, their deaths will go unrecognized, which was the plan all along.
Carolyn Rouse is professor in the Department of Anthropology at Princeton University. Her work explores the use of evidence to make particular claims about race and social inequality.