Interview by Sebastian Galbo, Co- Editor of the Literature, Arts and Medicine Database
Linda Villarosa is a contributing writer to The New York Times Magazine and director of the journalism program at the City College of New York. She is a graduate of the University of Colorado and, before completing graduate studies at CUNY Graduate School of Journalism, held a one-year journalism fellowship at Harvard T.H. Chan School of Public Health. Previous work experience includes serving as health editor for The New York Times, as well as executive editor of Essence Magazine. Her investigative journalism focuses on race issues and disparities in American healthcare. Major published stories include “America’s Hidden H.I.V. Epidemic: Why do America’s black gay and bisexual men have a higher H.I.V. rate than any country in the world?” (The NYT Magazine, June 6, 2017 and, most recently, “Why are black mothers and babies in the United States dying at more than double the rate of white mothers and babies? The answer has everything to do with the lived experience of being a black woman in America” (The NYT Magazine, April 11, 2018).
Our Email interview-correspondence took place in July 2018.
Please describe why you choose to focus your reporting on the intersection of race and disparities in American healthcare.
That’s what I’m interested in. I usually spend months and months on a story, so it’s important for me to care deeply about the issues and the people whose stories I’m sharing. I also think the intersection of health-care disparities and their connection to race is misunderstood and underreported.
How would you describe Arline Geronimus’s theory of “weathering.”
Weathering is the idea that the bodies of people of color, especially black women, age prematurely because of the lived experience of race and the impact of racism, bias and discrimination. This “perfect storm” creates a kind of toxic stress that leads to health problems. I love the poetic term, weathering. To Dr. Geronimus, it refers to both the idea of a storm weathering a house—chipping away the paint, beating against the windows—but also how a house weathers the storm, which is a kind of resistance and resilience that many of us have.
This process of weathering stems from a complex web of social and cultural relations and anxieties that influence stress levels, a consequence of what you describe as “the lived experience of black women” in America. Geronimus’s milestone research found that “The stresses associated with living in a race-conscious society may lead to early health deterioration in Black women through a complex mechanism that includes telomere shortening.” Specify exactly what this race-conscious experience is and how you understand it to impact infant/material mortality.
A number of researchers have made the link between racism and poor birth outcomes. I was struck by the findings of the Black Women’s Health Study, an ongoing research project out of Boston with 64,000 subjects. The scientists in this study asked subjects about every-day racial insults, like: Do you receive poorer service than others; do people act as if you are not intelligent, are dishonest or that they are better than you or afraid of you? They also included a set about more hard-core discrimination: Have you ever been treated unfairly due to your race at work, in housing or by the police? The findings showed higher levels of preterm birth and other conditions among women who reported the greatest experiences of racism.
Plenty of thorough and irrefutable research documents the realities of weathering, though this scientific evidence has its detractors. Why are systemic racism and its impacts, as driving forces of African-American infant and maternal mortality, an explanation that people quickly discredit?
People do not like to talk about racism and discrimination because it can feel assaultive and accusatory. But it is simply a part of our society, culture, history and language and has been largely unexamined. I think it’s important to talk about it, both within the health-care system and in our society, in order to move past the problems that it creates. Within medicine, people don’t go into the field in order to hurt people, and hard-core racists shouldn’t be caring for patients. But examining and facing the unconscious bias that is baked into the structures of our society should be an important part of medical training, for people of all races.
The NYT discussion board of your article presents a mixture of commendation and skepticism regarding your research. Many readers, for example, blame a dysfunctional culture, abusive relationships, diet deficiencies, and poor decision making (i.e. having multiple children with different male partners) as contributing to birth issues. This view, however, excludes any mention of the complex role that living in a race-conscious society has on the female black body. How do you address these types of responses that hold the individual culpable for poor birth outcomes?
I feel offended by comments like that, which by and large, I chose not to either read or address. I think it’s less interesting to read the negative comments to my article, and more fascinating to go through the tragic stories shared by dozens of black women in a follow-up article to my piece – and also on Dan Rather’s Facebook page.
For example, Simone Landrum is a good person who I respect and care about. For her, trauma began early; she has had a very difficult life; she almost died as a child, narrowly escaping Katrina, which without a doubt, was a tragedy that disproportionately affected African-Americans and was not related to “poor decision making.” She had to flee in water up to her chin; was that a dysfunction or choice? The dysfunction in this case was the choice to abandon black people in New Orleans and leave them to die.
Simone decided to allow me to follow her, attend her birth and tell her story, because she wanted to make a difference and help other people. It takes two seconds and no class to post a judgmental, negative comment about a person you don’t know and blame her instead of showing compassion. It takes courage to share your story in order to contribute to social change and help save the lives of other women and their children.
Studies show that a black woman with an advanced degree is more likely to die in childbirth, almost die or lose her baby than a white woman with an 8th grade education. So, something clearly is going on here that is beyond poor choices and cultural and lifestyle factors.
Because I knew some people would judge Simone, I interviewed a number of educated, professional women who had suffered the loss of a baby or almost died in birth – or both – though I am personally not as focused on these class distinctions. One, who didn’t make it into my piece, almost died giving birth to her son. After her baby was born, she began to hemorrhage; to save her life, doctors gave her a hysterectomy. She lives in a gated community in Florida, is highly educated with a husband, and was meticulous about her health during her pregnancy. She is devastated that she cannot have another child. Another, an Ivy-League-educated medical resident, who I interviewed but didn’t include, also almost bled to death during childbirth. Her baby was born at just under three pounds and survived. I included my own story in the piece as well. I was a high-level editor at Essence magazine with access to the best medical care. I was in great shape, eating healthfully, taking care of myself, but I had a low-birthweight baby. No one can explain why. I mentioned this to a black acquaintance last week, who is an M.D. and college professor, and she shared that she had two pre-term babies, born at 29 weeks. Again, no one knows why. But, clearly, if thousands of white women and white babies were dying or almost dying every year, including doctors, professional tennis players and college professors and their children, people wouldn’t be posting comments blaming them for their “dysfunctional culture.”
You remind readers that the doula consumer market has been largely dictated by the needs of white women. Historically, however, doula practice was originated by the black granny midwives of the South. A recent 2017 study, for instance, concluded positively that doulas may an effective resource for reducing birth inequities. The black doula today—particularly in the context of Simone Landrum’s case—seems to play an important twofold role, one of intervention and advocacy. Based on your experience talking with black women across the United States, why is professional birth support critical to the process of reducing black infant/maternal mortality?
Technology alone won’t solve the problem of maternal and infant mortality. Doulas—and their granny midwife ancestors and role models—simply put, help put the care back in healthcare.
Your article strongly suggests that doulas are much less a luxury than they are an urgent necessity. The National Black Doulas Association and the Black Women Birthing Justice, for example, provide doula directories and access to educational material for black birthing families and single mothers. To elaborate, what kind of emotional, physical, and educational support do doulas provide that mainstream healthcare institutions do not? How are doulas addressing the health needs of black women, specifically?
Doulas are often the buffer between our technical/clinical health-care system and a woman and her family as they go through what is essentially a human stress test: pregnancy, childbirth and the months following delivery. I witnessed the Birthmark Doula Collective in New Orleans doing the hard, low-paid heavy lifting that was the difference between positive and poor birth outcomes. First, black women are more likely than other women to enter pregnancy with health challenges, including high blood pressure and to suffer from pregnancy related hypertension, which points to the need for extra support. I’m also going to point to just two measures: black women are more likely to have c-sections – or be told they need them – than other women and also more likely to meet their doctors for the first time during labor. C-sections, of course, can be lifesaving but are also over-relied upon according to international guidelines and come with side effects. Those two facts alone, plus both anecdotal and research-backed disrespect during childbirth, make it more than luxury to have emotional, physical and educational support to turn this crisis around.
What surprised you most during your research and investigation for this article?
I was surprised that the black-white gap in infant mortality is larger now than in 1850 when black women were considered chattel.
Your article suggests that American medical schools are failing to prepare students to challenge biological essentialism that perpetuates certain stereotypes concerning black bodies. I’m referring, in part, to the 2016 University of Virginia study concluding that African-American patients receive insufficient treatment for pain compared to their white counterparts. This study also reported that white residents and medical students espoused biological misconceptions—such as blacks having thicker skin, dull nerve endings, and faster-coagulating blood. What needs to change in medical curricula to dispel these medical preconceptions before they influence practice?
I find this horrifying, but not shocking. Racial stereotypes are deeply imbedded in our society, and medicine isn’t immune to them. I find it appalling that black women, who face both race and gender bias, are often treated poorly by medical professionals who should be their healers. Simone Landrum’s doctor ignored her legitimate concerns, which lead to the death of her baby daughter and her near death. Serena Williams, who can afford gold-star health care and knows her body better than the average person, faced a life-or-death crisis after the birth of her baby—and again, her concerns were ignored.
I am happy, however, that growing numbers of medical students are demanding better medical education and a more textured, open discussion of race and racism in medicine and health inequality. I have seen it at some medical schools, at medical student conferences, and in groups like White Coats for Black Lives, a student organization with chapters at more than 50 medical schools whose goal is to eliminate racial bias in the practice of medicine and recognize racism as a threat to the health and well-being of people of color.
Many online readers commented that they encounter(ed) racism in other women’s medical specialties, not just prenatal and post-birth care. For example, one reader described her prolonged struggle to get her primary physician to refer her to an appropriate specialist to address matters concerning infertility, and expressed that “it’s extremely difficult to get white female doctors to consider their black female patients as equal to other patients” (Comment Posted: April 17, 2018). Based on your research and knowledge of similar case studies, how pervasive and ‘undetected’ are racial biases in the American healthcare system?
I think racial bias and inequality is embedded in the American medical system, as it is in American culture and society, and has been examined for at least a century and has been documented in thousands of published studies. To understand what is going on in our country more fully, study the work of Dr. David Williams, a professor at the Harvard T.H. Chan School of Public Health. As part of his exhaustive research dive into health-care inequity, “Miles to Go Before We Sleep,” he includes an 1899 quote from the scholar W.E.B. DuBois, which sums up the past and present poignantly: The most difficult social problem in the matter of Negro health is the peculiar attitude of the nation toward the well-being of the race. There have… been few other cases in the history of civilized peoples where human suffering has been viewed with such peculiar indifference.”
Where is the national will to address this issue? Why isn’t this a national priority?
I think things are changing, slowly, thanks to wider recognition of the problem. After my article appeared, I was very excited that, for example, New York governor, Andrew Cuomo, expanded Medicaid to cover doulas in order to address the problem of maternal mortality in black women. In June, the Senate passed a bipartisan appropriations bill that included $50 million to fund activities to reduce maternal mortality in the United States.
What it will take to remedy the high rate of African-American infant and maternal mortality?
I think it needs to be addressed on all fronts: We need more research into both the extent and cause of this problem and a deeper recognition and understanding of toxic stress and how it affects pregnancy and childbirth. Doulas and other birth workers should be expanded and better compensated, so they can provide emotional and informational support to mothers and their families in combination with improved, consistent protocols in the face of problems like hemorrhage. And a new generation of medical students and other healthcare providers should be made aware of racism that is entrenched in our system and taught how to address and combat it, personally and professionally.