Historical essay
Talking Back to the NIH

Talking Back to the NIH

J. Nalubega Ross

In January 2018, Serena Williams went public about how she almost died after giving birth to her daughter. Williams has a history of blood clots, and when she recognized the signs of a clot after her C-section, she walked up to her nurse and asked for exactly what she needed. But as she tells it, the nurse assumed that because of her pain medicine, Williams was confused, and dismissed her concerns. Even with Williams’s intimate knowledge of her own body, she almost died because of the nurse’s assumption.

Williams’s honest story reminded me of having my own child. It was a journey that included taking my white partner to every appointment. Yes, I wanted him to be a part of the pregnancy. But as a black woman who studies and has worked in the American health care system, I knew that the attending physician would dismiss whatever worries I had. As sociologist Dr. Tressie McMillan Cottom so eloquently put it, all the doctors would see was “an incompetent black woman.” I needed my white partner in the room to validate my concerns.

Serenca Williams sits in front of several microphones; the photo is from her shoulders up, she is wearing a gray top and gold ncklace, and her hair is loose and curly. She has a look of thoughtful incredulity on her face, or maybe sadness.
American tennis player Serena Williams during a press conference in Doha. (© Vinod Divakaran/Flickr)

On the heels of Williams’s story, all around the country the conversation shifted to the crisis of black mothers dying at rates much higher than their white counterparts. On social media, black women shared their own stories or those of loved ones who had died or almost died during pregnancy or childbirth. Throughout this collective storytelling, science, in particular health research, was largely silent about what was causing these deaths. In the United States, the National Institutes of Health (NIH) is the agency responsible for medical research meant to improve the health of Americans. As the agency responsible for funding research, it should allocate research dollars toward finding the causes of, and putting an end to, the deaths of black mothers.

In late 2019, a year after Williams’s revelation, the Chronicle of Higher Education published “Are Black Scientists Being Punished for What They Want to Study?” The article highlighted what many black researchers already knew: the NIH was not funding black scientists’ research. This was eight years after a 2011 study by Donna K. Ginther and colleagues, which found that even when taking into account a researcher’s educational background, previous work, and where they trained, black researchers were less likely to receive funding from the NIH.

The reason as to why black scientists were not being funded, according to a 2019 study, was the topics they chose to study. Black researchers tended to do research with the key words, “disparity,” “socioeconomic,” “ovary,” and “reproduction” – topics that the NIH were least likely to fund. It is not surprising that black scientists choose to study these topics. Black people in the United States are more likely to be of lower socioeconomic status and have limited access to health care. When it comes to reproduction, black women who get pregnant are eight times more likely to die from pregnancy and birth-related complications than white women.

Despite the continued failure to fund studies that would end the unnecessary deaths of black women during pregnancy and childbirth, the collective storytelling of women was generative. It has highlighted how, for years, black women have been advocating, organizing, and talking with each other about the issue of birth. During slavery, granny midwives were community healers who helped enslaved black women give birth. And after slavery, granny midwives continued to help black and poor white women. In 1994, African American women, part of the organization Sister Song: Women of Color Reproductive Justice Collective, created the framework for reproductive justice: the right to have a child, the right not to have a child, and the right to parent the children we have in a safe and healthy environment. By creating and defining reproductive justice, black women were responding to the lived realities of what it meant to be black, pregnant, and a mother, a reality that included being treated as incompetent and a drain on society.

In “Learning from the 60s,” a 1982 speech delivered at Harvard University, the writer Audre Lorde said, “I learned if I didn’t define myself for myself, I would be crunched into other people’s fantasies for me and eaten alive.” Black women giving birth and parenting in America have been defining themselves for centuries. And from their definitions of themselves, they have created a wealth of scholarship. By rejecting black scientists, especially those researching the deaths of black mothers, the NIH is ignoring this scholarship, scholarship that could help address the deaths of black women in America.

As of the writing of this article, the entire world is struggling with the COVID-19 pandemic. In the United States, the pandemic has led to the loss of over 100,000 lives. For black women who are pregnant or giving birth, the pandemic has made an already bad situation much worse. Serena Williams’s story showed that nothing could protect a black woman from potentially dying anytime during pregnancy and childbirth: not wealth, not education, and not even the presence of a wealthy white partner. For the NIH, which is responsible for research to improve the health of Americans, to deny black researchers investigating “disparity” and “reproduction” is disheartening. This research is not simply an intellectual endeavor, it is a matter of life and death. The question we must pose to the NIH, then, is: when will they join black researchers in doing this life-saving work?

Featured image caption: Pregnant. (Courtesy Public Domain)

J. Nalubega Ross is a Ugandan American living in the dry dry desert of Arizona. She is currently pursuing a graduate degree at Arizona State University. Their graduate work is concerned with how people from Africa living in the United States look for information about sex and reproduction. And once they find that information how do they use it make decisions about having or not having sex and whether or not to reproduce. When not reading books for graduate work and avoiding writing, Nalubega spends time watching and commenting on cartoons with her toddler and ranting to her partner about sex and reproduction in the United States.

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