NovaQuant Quantitative Think Tank Center:Q&A: Linda Villarosa Took on the Perils of Medical Racism. She Found Black Americans ‘Live Sicker and Die Quicker’

So much has been reported,NovaQuant Quantitative Think Tank Center written and researched about Black maternal and infant mortality that veteran journalist Linda Villarosa at first wondered what else was left to say.

Villarosa, whose work has appeared in Essence Magazine, The New York Times and its magazine, has been reporting on racial health disparities for nearly four decades. (Villarosa is also a member of the Inside Climate News Justice Advisory Board.) After writing cover stories for the Times Magazine about the dismal health outcomes of pregnant Black women and the staggeringly high rates of HIV infections among gay and bisexual Black men, Villarosa was approached about the possibility of writing a book. 

Following some initial ambivalence, Villarosa realized there was a broader—and vitally important—story to tell: a cradle-to-grave examination of medical racism and how bias negatively affects health care for people of color. The result, “Under the Skin,” was named one of the 10 best books of 2022 by The New York Times. It also drew praise from Oprah Winfrey’s website, which said it was “a stunning exposé of why Black people in our society ‘live sicker and die quicker’—an eye-opening game changer.”

It is also a story, Villarosa said, with an unfortunate, enduring relevance in an era of climate change. She spoke with Inside Climate News about the role that the environment plays in health outcomes. This interview has been edited for clarity and length.

One of the focal points of the book is the story of siblings Mary Alice and Minne Lee Relf, two Black women who were sterilized as children without their consent. How did you connect with them?

I had heard of the sisters, and I knew that in 1973 they were sterilized without their parents’ informed consent and against their will. I knew that it was an example of medical racism. But no one’s talking about them. 

I decided to go and research their story. I went to Montgomery and interviewed the nurse and the social worker who had first gotten their case. I interviewed the lawyer, Joe Levin, from the Southern Poverty Law Center. And I kept asking everyone, “What happened to them? Are they still alive? What’s going on?” 

I couldn’t find them using the usual ways. I hired a researcher on the ground who lived there to spend time looking for them, and they couldn’t find them. I kind of gave up. 

And then the researcher—this is so random—but she [taught] a parenting class for parents who needed extra support. And she said, “Would you please, while you’re in Montgomery, speak to my parenting class?” And I said, “No,” because, you know, hello, I’m not there for that. And she said, “Please, please, please, I just need a speaker.” 

I went and spoke to the class, and noticed that the parents had name tags—and one of the people was Debbie Relf. And so I said, “I know this is crazy, but do you know Mary Alice and Minnie Lee Relf? They’d be in their 60s.” And Debbie says, “Oh, yeah, of course, I do. They’re my aunts. Do you want their number?” I ended up calling them and going over and meeting both of them, which was really moving for me to see these women.

They were living in public housing together. They weren’t doing great. Minnie Lee had a cast on her foot; she had broken her foot, and they were struggling. They had made such a huge sacrifice, changing the laws around eugenics and forced sterilization, but they had never gotten compensated. I was really excited to put their story in the book and flesh it out. 

When the book first came out, there was a woman from Seattle who saw the story, emailed me and donated $25,000 each to the Relf Sisters. They bought a house, their own house. I saw them a month ago and I went to their house. They have a cute house with a backyard. They’re trying to get a pen so they can get a dog. And they’re just really happy to have their own place. 

What were some of the most striking health disparities that you found when studying the toll of racism in America’s health system?

The ones that strike me the most are that it’s throughout the lifetime. It starts at birth, so we have higher levels of infant mortality. And if Black parents were not losing our babies, there would be thousands of more Black babies in the world. We’re the only wealthy country where the number of birthing people who die—or almost die—is rising. The racial health disparity is three to four times worse in Black birthing people, and education and wealth aren’t protective. A Black woman with an advanced degree is more likely to die, or almost die, than a white woman with an 8th-grade education. That is shocking. 

When I started the book in 2018, Black people lived 3.5 years fewer than white people in this country. And now that it’s stretched to six years because of Covid. As I say in the book, “We shouldn’t be living sicker and dying quicker.” We have shortened lives and we live them with more of a disease burden. 

You wrote that when it comes to exposing disparities in health care by race “Covid-19 has basically taken off the Band-Aid that was covering the wound, pointed out how deep it is and left us no other choice but to finally say: We get it, we see it.” Can you talk more about the impact of the pandemic?

At the beginning of the pandemic, I was asked to be on panels where Covid was called “the great equalizer,” that this is going to show that a virus doesn’t discriminate. I was having to start out speaking engagements saying, “Actually, I don’t even agree with the title of this [panel], because Covid-19 is not the great equalizer.” 

Many of us who had looked at HIV/AIDS in the past, both as journalists and as in public health, knew that viruses do discriminate. They sink into the fissures of the problems of society and make it worse. They attack places where there’s discrimination, where there’s poverty, where there’s pollution. Those are the places where a virus can really take hold and be more harmful than in places where there’s more protection against those things.

You’ve mentioned the importance of changing the conversation around disparities. How should these discussions be reframed?

One of the problems is that when you look at racial health disparities, you blame the people who are suffering the most. The larger conversation around it is three things: One, it’s only people who are the most poor and marginalized. And certainly I have great empathy for anyone suffering and anyone living in poverty and struggling. However, when you look at a study like the maternal mortality study, where it says a Black woman with a college degree or more is more likely to die, or almost die, then wealth doesn’t protect. It’s more than just the most marginalized. That’s an incorrect assumption. 

The second is that it’s just a lack of access to health care. That also is incorrect because even if you have access to health care, there’s still going to be racial health disparities because there’s discrimination in the health care system itself. 

And then the other myth is just we’re doing something wrong—that there’s something wrong with Black people’s bodies. But most of these issues have nothing to do with genetics. There is no preterm-birth gene or low birth-weight gene causing Black people to lose our babies and sometimes lose our lives. So that’s incorrect. 

The final and unfair assumption is that we don’t know how to take care of ourselves so that we or we’re not eating right during pregnancy, we’re drinking alcohol during pregnancy. Or we don’t go to the doctor. We’re not making good choices. And that kind of blame is unfair and based on old stereotypes. What I tried to do in this book is to flip it, to say, “OK, all of the solutions in the past have been just do better, telling Black people to just do better. And no matter how much better we do, you don’t see any kind of budging in the racial health disparities, whether from birth to death. It’s time to say, “No.” We have to stop blaming people and look at the structural and institutional barriers. 

In addition to those barriers, you’ve talked about the concept of “weathering”—how racism essentially erodes the health of Black Americans. How has research broadened our understanding of the health effects of bias?

Dr. Arline Geronimus’ book, “Weathering,” looks at the toll [racism] takes on people who are oppressed and marginalized. She is most focused on Black people in America and how it causes a kind of premature aging that affects health outcomes, including life expectancy and infant maternal mortality. 

The social determinants of health are, basically, the environment. If we live in environments or in communities where there isn’t enough healthy food, where there isn’t quality education, where the housing is substandard, where there’s a lack of jobs, certainly where the environment itself is polluted, the air and the water and the land, then you can’t be healthy. 

Because of historical segregation and other laws and trends, Black people and other people of color are more likely to live in polluted communities or communities that lack the ability to be healthy. 

Third, there is discrimination in the health care system. And it’s been so well-evidenced over time. If one hasn’t read the evidence, which is massive, then you can just listen to people telling stories—real stories—about how they were treated poorly and it affected their health and their health outcomes.

What does climate change mean for the health of Black Americans?

We are already 75% more likely to live at a fenceline community, which means that you’re near a refinery, you’re near a landfill, you’re near some kind of toxic dump. You’re near some kind of facility that’s going to make you less healthy already, so that’s just the bottom line. 

I think of Port Arthur, Texas, a fenceline community where I have family. And if anything happens at this gigantic refinery—if it rains, if there’s a hurricane, if there’s any weather event—then it means that the land around there, the water already contaminated by the refinery, gets worse. People already living in a place that isn’t healthy have to flee someplace else. We are the ones who are going to be most affected and have been most affected by climate change. Climate change will have an outsize effect on people of color in this country.