A Hidden Infection

Daisy Hernández is a rockstar of feminism. The professor, journalist and writer co-created and edited Colonize This! Young Women of Color on Today’s Feminism —a thick collection of essays that’s included in women’s studies syllabi across the country. In her memoir A Cup of Water Under My Bed —a title that refers to a practice for removing negative energy— the former Ms. magazine writer and Colorlines editor unpacks her experiences as a queer Latina raised in the complexity that immigration and all its root causes stir.

Hernández’s latest book puts a disease — Chagas — on the map that U.S. medical institutions have ignored but that more than 300,000 people here are suffering. She shares the havoc Chagas wreaked on her Tía Dora, how it ate away her esophagus and colon. The disease, clinically known as trypanosomiasis, is spread by parasite-carrying bugs that leave bites around the mouth.

Born and raised in New Jersey to a Colombian mother and Cuban father, Hernández talked to IDAR/E about not only The Kissing Bug: A True Story of an Insect, a Family and a Nation's Neglect of a Deadly Disease, but also the impact of putting her and our stories out there, unconditionally.

Edited for length and clarity.

How challenging was it to raise awareness about Chagas amid the COVID19 pandemic?

What’s happened with the pandemic is that Americans are much more aware of racial disparities in healthcare, and so that actually gives readers some context for Chagas disease. Everything that I saw happen with the pandemic — from access to the COVID test to access to the vaccine, which was also being shaped by race and class—I saw all of that with Chagas as well. This disease disproportionately affects Latinx immigrants who are in poor and working-class homes, and who don’t have access to health insurance. And even when they do have health insurance, it’s often the case that they have to advocate for themselves with their healthcare professionals because medical schools still do not teach about Chagas.

I look specifically at Chagas, but if we look at other diseases, like tuberculosis, we also see how they are off the radar because middle class, white America is not being affected. Tuberculosis is still present in immigrant communities in the United States. It’s in communities where people have been homeless, or in prisons. When we look at HIV, some people think it’s been eradicated. But it’s an epidemic for the Black community in the South.

You would think that institutions that are in proximity to Latin American communities here would have some knowledge of Chagas?

Part of the reason is that this parasitic disease can be very silent in the body so that someone can live up to three decades and neither have symptoms nor realize that their symptoms are related to cardiac complications. This is not ebola. This is more like Lyme disease in certain ways, where the symptoms can be a little confusing for people. If doctors don’t know that they should be looking for Chagas disease, they could think that you have a heart problem of unknown origin.

[The lack of knowledge] is this combination of medical racism and medical neglect combined with the biology of how this parasite works in the body. Chagas is very good at being silent, making it difficult to identify, but once you know that, “Hey, there’s a 40-year-old man in your emergency room who’s having heart problems and he’s otherwise in good health. Oh, he’s from South America or he’s from Central America or Mexico,” you want to think about Chagas disease.

The CDC (Centers for Disease Control and Prevention) has been issuing grants over the last five to seven years to try to raise awareness about the disease. So the awareness is happening, but very slowly.

In your book and memoir, you share personal stories about your family. How does that go over with them?

I’m both blessed and cursed as a writer because my family does not read my books in English so I have to wait until they’re translated, and even when the books are translated, my parents still do not read my work. I think if someone produced a television show in Spanish about my book, they might watch it. If Jorge Ramos was interviewing me, I think my family would ask, “Oh, why is he talking to you about us?”

A Cup of Water Under My Bed was translated into Spanish and I did have relatives in Colombia who read the book and I found out that I had some very cool, feminist cousins. And then I also had other family members who read the book and never said one word to me about it. I learned to respect the boundaries that family members put around the work.

I don’t write my books for my family. I write them for versions of me that might be out there and need the book. I’m really clear about that and it makes a huge difference. Like with The Kissing Bug, I thought about that English-dominant reader who has a family member with, or who may have, this disease and wanted this information and story in a way that was accessible.

“I don’t write my books for my family. I write them for versions of me that might be out there and need the book”

You’ve written about working at the New York Times, about the paper’s centering of whiteness and privilege. Having that experience and given where we are at now with a reckoning around race and media, do you see any real shifts?

I feel like I’ve witnessed a shift almost on a daily basis just from listening to NPR Morning Edition. They’ll have a writer of color or they will have a segment on issues of race that doesn't have to do with just rehashing the past. This is so symbolic of two things: The fact that there are more journalists of color working today than ever before, which is exciting, and that they are working across media platforms. But also that they’re bringing their communities with them.

This was true when A Cup of Water Under My Bed came out. The people who reached out to me were either queer journalists or people of color journalists. They were the ones who were sort of waiting for this queer, coming of age, Latina story. I was realizing, “Oh, that did not exist when I first came into journalism.” We were not there in significant numbers.

Obviously, the institutions have not dramatically changed — a friend of mine at the New York Times said it’s still the same. But last year, I was paying a lot of attention to who the Times and other media outlets were sending into all these cities across the country to talk about police brutality and the killing of Black Americans. And I noticed how many outlets were sending Black reporters. I don’t know whether this was the case five or 10 years earlier. And in a way, it is different. It definitely happened in the 1960s and ‘70s, but here, they were sending reporters who have critical race theory under their belt, who have feminism under their belt, who have so much more knowledge and tools in terms of analysis than generations before had because those generations before were creating it for us.

I feel like there’s room to be optimistic, and then, of course, you have to have that fire in your belly because there’s still so much to be changed.

You and Bushra Rehman put out a second edition of Colonize This! a few years ago. What are the reactions you get from younger women?

The feedback that has stayed with me over the years has been hearing from young people of color that this is the book that helped them to feel less lonely. This is the book that helped them feel that they were not the only ones who were questioning everything, wanted to learn more, wanted to know more about their own histories and histories of their communities.

We sometimes forget when we were in our early 20s, or as teenagers, just how isolated we felt at times and how much we felt like the only person who was a raging feminist. Or that we didn’t even have that language. Or that first time we come across a book or a movement that speaks to our political selves — it’s just so incredible. That’s been just a huge honor — that our book is part of that experience for people.

Note: The interviewer is one of the writers in Colonize This!