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'Kissing Bug' Tells A Personal Story About Race, Sexuality And A Deadly Insect

TERRY GROSS, HOST:

This is FRESH AIR. I'm Terry Gross.

Summer means mosquitoes, those vampires of the insect world. We're going to talk about another vampire insect that is probably less familiar to you. It's known as the kissing bug, which sounds kind of lovely, but it doesn't kiss. It bites and feeds on the victim's blood. Those bugs live in warm climates and are mostly found in South and Central America and Mexico. The bite can carry a parasite, which in some cases can lead to the destruction of the heart, esophagus or colon. My guest's aunt was a victim.

Daisy Hernandez is the author of the new book "The Kissing Bug: The True Story Of A Family, An Insect, And A Nation's Neglect Of A Deadly Disease" (ph). Hernandez was raised in New Jersey by her mother, who's from Colombia, and her father, who's from Cuba. When Hernandez was 5, her aunt, who was living in Colombia, came down with a mysterious ailment that caused her large intestine to swell so much people assumed she was pregnant. The aunt's sisters flew her to New Jersey to care for her and get the medical help she needed. It was too late to completely stop the progression of the disease, which eventually killed her after many surgeries and years of suffering.

Hernandez's new book is in part the history of the disease, a history that includes Charles Darwin, who may have had it, and a research experiment very similar to the notorious Tuskegee experiment. The book is also part-memoir, about growing up in an immigrant family and coming out as bisexual, which her aunt was never able to accept.

Hernandez is a former New York Times reporter who writes about the intersections of race, immigration, class and sexuality. She's the author of a previous memoir called "A Cup Of Water Under My Bed" and is the co-editor of the book "Colonize This! Young Women Of Color On Today's Feminism."

Daisy Hernandez, welcome to FRESH AIR.

DAISY HERNANDEZ: Thank you so much for having me.

GROSS: You know, I should start by saying I've seen the name of this disease written, but you should pronounce it so we all know how to say it.

HERNANDEZ: Yes, the actual name is Chagas disease.

GROSS: And it's named after the doctor who discovered it.

HERNANDEZ: Dr. Carlos Chagas from Brazil, who discovered it in 1909.

GROSS: So your aunt got very sick when you were 5 or 6. You - she was flown to America by her sisters. She lived with you, right?

HERNANDEZ: She did. Yeah, she did. It was quite a gamble at that point for her to come because doctors in Colombia had told her that she maybe had a year or two to live. They were not able to diagnose her with the disease. My mother and my auntie did not have a lot of money, but they believed in all things American, including medicine, and so were just taking a gamble in the hope that they might find a doctor here who could help, and they did.

GROSS: So you grew up watching her be in and out of hospitals, be nauseous, be sick, be unable to eat. Her colon had swelled up. Her esophagus was becoming destroyed. How old were you when you learned that this was because she was bitten by a bug?

HERNANDEZ: So I learned about the kissing bug when I was probably around 12 or 13. And I think it was pretty horrifying, and it probably cemented my fear of insects for the rest of my life at that point. I also learned that another family member, another auntie, had died in Colombia when she was very young not from contact with kissing bugs, but probably some kind of hookworm or something like that.

So I learned at a really young age to be terrified of the natural world, you know, and to be terrified of what could happen to me out in a rural area because that was the connection as well with these insects is to rural areas of South America.

GROSS: So can you describe what the bug, what the kissing bug looks like?

HERNANDEZ: You know, there are more than a hundred species of kissing bugs. It's about five of them that are very - considered to be very dangerous. And they vary in size but are around an inch long. And can - you know, sometimes they'll be described as very large beetles. Sometimes people describe them as a variety of a cockroach, actually. I think they look very distinctive, actually. I don't think they look like another insect. They have a cone-shaped nose. They have very large eyes. They have a proboscis that is very straight, so that needle part of their mouth is very straight. They also have - they have wings, but they are very weak flyers. So in Quechua, they're actually called - they're called vinchucas, which means - in Quechua means the bug that falls, or one that falls down, because they actually kind of scuttle down the walls of homes when they're trying to get closer to a victim. And, yeah, they're pretty - I think they're pretty terrifying-looking.

Over the course of working on this book, I came to see ways that they might look a little pretty because around their abdomen or their back, a lot of the species will have different colors, including sort of shades of red and orange. It kind of looks like they're almost wearing a skirt, which is very unusual.

GROSS: So the parasite that causes the destruction is transmitted by the kissing bug, but it's transmitted by the bug's feces, not by the bite itself. Could you describe this phenomenon?

HERNANDEZ: Yeah. It's a point of confusion. You know, we associate so much bug bites with the transmission of disease, but in this case, the kissing bug will bite a person, and then there's a lag time before there's fecal material that's deposited, and that actually makes - can make a pretty big difference. So if they bite you and they also expel their fecal matter, which is carrying the parasite because the parasite has gone through a whole process inside of this kissing bug - to be transformed, it has several stages. So when it's coming out in that fecal matter, that's actually what ends up in either the bite wound, or it can end up in a person's eye or nose or mouth area. And sometimes it's simply because the person is asleep, just feels a little itch and starts to rub at the wound site or starts to rub around their eyes or their mouth. And so they can actually - you know, the person themselves can actually introduce that fecal material into their own body

GROSS: By touching the bite and then rubbing their eye.

HERNANDEZ: Exactly.

GROSS: So most Americans, I think, have never heard of Chagas disease or of the kissing bug. How widespread a disease is this in the areas where the bug lives?

HERNANDEZ: That's what was shocking to me because growing up, I thought it was an incredibly rare disease. We never met another family who knew about this disease or had a family member with this disease. So it was really shocking for me to find out that this is a disease of the Americas. So as you said, it's mostly in South America, Central America and Mexico. It's about an estimated 6 million people who have this disease in the Americas. In the United States, however, there's 300,000 people who have Chagas disease, which is an incredible number. And all of those people are similar to my auntie in that they are immigrants from this part of Latin America.

GROSS: Watching your aunt suffer, the unspoken rule was, like, you don't talk about it with her. Why wouldn't she talk about it? And what was it like for you to not be able to acknowledge the obvious thing that was in control of her life?

HERNANDEZ: I think that a large part of why we didn't talk about it was that kind of intersection of immigration and public health. So my auntie came here in 1980 and was here in the '80s. So we were growing up, and she was getting to witness the start of the AIDS epidemic. And so I think and suspect that, you know, she really saw the kind of stigma that people suffered with that disease, and, you know, not because we knew someone in our family, but simply by just, you know, we - I mean, we lived through it. So watching the news, reading the papers, the way people talked about it, I think she was really afraid to be stigmatized. She very much saw herself, you know, as a new arrival in the United States. And here she had this disease that no one had heard of that, you know, by all accounts sounds really scary.

And I also think she was a very ambitious woman. She came here when she was 30, and she wanted to stay, actually, after her initial surgeries. She wanted to stay. She wanted to continue the teaching career that she had started in Colombia. She was the first person in her family - the first girl in her family to go to college. And I think she very much saw that if anyone knew about this disease, it would interfere with that kind of ambition that she had for her life because she was so determined that she was going to get well and that she was going to overcome this.

GROSS: Was she able to teach?

HERNANDEZ: She was. She did, actually. She ended up becoming a Spanish teacher in the Jersey City public school system and taught everyone from kindergartners to third- or fifth-graders Spanish, actually. And a lot of the students were themselves from Latin America, so she was actually helping them to preserve their language.

GROSS: She managed to get good medical care. Your mother took her to Columbia Presbyterian Medical Center (ph) in Manhattan. Would she have been able to get that medical care today? She wasn't a citizen. The family didn't have money.

HERNANDEZ: She would not have been able to receive that level of care today because of her citizenship status. She came on a tourist visa, and she stayed, so she was undocumented. I have no indication from any family member that her doctors or anyone actually in the hospital ever asked about her status. They treated her as any other American who did not have health insurance at that time. Today in the U.S., I mean, just by being undocumented, she would not have been able to receive that level of care. She would've had to rely on emergency rooms and safety-net hospitals.

GROSS: Let me reintroduce you here. If you're just joining us, my guest is Daisy Hernandez, author of the new book "The Kissing Bug: The True Story Of Family, An Insect, And A Nation's Neglect Of A Deadly Disease" (ph). We'll be right back. This is FRESH AIR.

(SOUNDBITE OF RUDY ROYSTON'S "BED BOBBIN'")

GROSS: This is FRESH AIR. Let's get back to my interview with Daisy Hernandez. Her new book is called "The Kissing Bug: A True Story Of Family, An Insect, And A Nation's Neglect Of A Deadly Disease" (ph).

Have the treatments for Chagas disease gotten any better than when your aunt had it?

HERNANDEZ: Not yet, unfortunately. There are two treatments that are used for Chagas when it's in the acute stage. So that acute stage lasts for about two months after the bug bite. And if you're an adult, that's the time to get treatment. However, very few people know that they have been bitten, know that it's dangerous. And so there's really - they're not getting treatment in that acute phase. Those drugs, though, are also effective for children, so anyone under that age of 18, even after that acute stage. And researchers don't know why exactly it's so effective in children and not necessarily in adults once it goes into the chronic stage, but it's incredible that it is. And one of those drugs has actually been approved by the FDA for use in the United States at this point. Also, the parasite can be transmitted from mother to child.

GROSS: During pregnancy.

HERNANDEZ: During pregnancy can be transmitted from mother to child. And so when that baby is born, that baby can be treated with those medications and essentially be cured. The other thing that can happen is that a woman who is thinking about having a child and has maybe been - you know, is infected herself, she could receive that treatment, and it seems to lower the chances of passing the parasite on to her child. But once it's in the chronic form, like it was for my auntie, there isn't a cure. It's managing the disease for the rest of your life.

GROSS: You write that Charles Darwin probably suffered from Chagas disease for years. Why have researchers or historians reached that conclusion or that hypothesis?

HERNANDEZ: Yeah, yeah. It's very much a hypothesis, and it can get controversial depending on who you talk to. Charles Darwin was in South America in the 1830s. He was a young man. And he ended up getting pretty sick. He ended up - when he was back in England, he spent decades suffering from different gastrointestinal disorders. He was often nauseous, vomited, had headaches and suffered on and off. Actually, when I read about his life, it was a little strange how much it reminded me of what my auntie experienced.

Part of the reason that some historians have thought that there was a link to Chagas disease is because he came into contact with the kissing bugs in Argentina and also in Chile. And he documents that very well, of course, in his notes. He spent a night actually sleeping on the ground, just, you know, out in the open, of course, feeling the insects, the kissing bugs, all over his body. And he didn't sleep that night because he was basically fighting them off. So the fact that he had these gastrointestinal disorders that could not be - were never diagnosed and that he had had contact with the kissing bug has led some historians to think there could be a connection that he may have suffered from this disease.

GROSS: One of the very disturbing things in the history of Chagas disease and the kissing bug is that in the 1940s, a very unethical research study similar to the Tuskegee syphilis study, the Tuskegee experiment, was conducted on a young Black man. And bugs were planted on him so that he could get the disease so that they could study it. Tell us a little bit about this experiment.

HERNANDEZ: Yeah. This did happen in 1940. A researcher was actually sent to Texas to investigate possible cases of Chagas disease, and he was not able to find cases of the disease at that point. And what he ended up doing was - he worked with what is now the Austin State Hospital, and this was a psychiatric hospital in Austin, Texas - and took a patient, a young Black man. He was 24 years old and, as you said, purposefully infected him with kissing bugs that were native there to South Texas. What he wanted to see was the progression of the disease. He wanted to see if the kissing bugs in the United States were similar to those in South America because at this point, you know, news had already come out of Brazil about this disease and out of Argentina. And he wanted to see if the insects in the United States could transmit the parasite, could cause disease. And so he experimented on this young Black man.

And indeed, two weeks after infecting him, the young man had swollen lymph nodes. He had a swollen eyelid. He was running a fever. He was very sick. And four weeks after that, the researcher needed to confirm that the parasite was actually in his body. And so what they did at that time - because this is 1940, at that point, we don't have antibody tests. So what they would do is they would take kissing bugs that had been raised in the lab that the researcher knew were not infected. And they basically placed these bugs on the young man's body so that the insects could feed and then be dissected, and then they would look for parasites. And so four or six weeks after he was infected, there were parasites in the insects, which was a confirmation for this researcher that the insects in the United States could transmit this disease. It was a really horrifying part of the history. I had never expected to come across this.

GROSS: And just to briefly explain part of the research, the insects pick up the parasite by feeding on an animal or a person who is already infected.

HERNANDEZ: Absolutely. Yes, yes.

GROSS: So I had never heard of this experiment. It is very disturbing. How documented has it been? Is this this kind of, like, secret that you managed to uncover?

HERNANDEZ: No, it was mentioned in one book that looked at infectious diseases in the United States by the parasitologist Robert Desowitz. That's where I first heard the mention. And then I basically - I wanted to find out everything that I could. So with the help of librarians who helped me to access correspondence and by reading the article more carefully, I was able to piece together that this young man had been a patient at this hospital. There was a reference in some of the letters with the researcher that there may have been other patients involved, as well. I could not find more evidence of that. But no, it hasn't been well documented at all.

One of the things that I tell people, especially now in light of the coronavirus and the hesitancy in the Black community, is that even though this was a case where - that is not well-known, it's really hard for me to imagine that word did not get out in some way - you know, that this young Black man's story was not known at least among other patients, among staff who worked at the hospital, by his family, perhaps, you know. So there are just so many stories of medical racism that we don't hear about, but that I think get known in the community.

GROSS: What makes this story so horrifying, too, is that this is somebody who likely had some kind of mental health issues because he was recruited for this study at a mental health hospital. And so you're already suffering from some kind of mental health issue, perhaps paranoia, and then somebody is putting this, like, deadly insect on your body to feed on you. I just - it's unimaginable.

HERNANDEZ: Yeah. And by 1940, what I was able to find is that a high number of patients were either suffering from what today we would call schizophrenia or bipolar. So it's exactly as you say. There was probably, you know, already certain levels of paranoia. And then to be subjected to this is just horrifying.

GROSS: Well, there's so much more to talk about here, but we have to take another break. So let me reintroduce you. If you're just joining us, my guest is Daisy Hernandez. Her new book is called "The Kissing Bug: A True Story Of Family, An Insect And A Nation's Neglect Of A Deadly Disease."

We'll be back after a short break. I'm Terry Gross, and this is FRESH AIR.

(SOUNDBITE OF AARON GOLDBERG'S "ISN'T THIS MY SOUND AROUND ME")

GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to my interview with Daisy Hernandez, author of the new book "The Kissing Bug: A True Story of Family, An Insect, And A Nation's Neglect Of A Deadly Disease." It's about the disease Chagas disease carried by the bloodsucking insect known as the kissing bug, which is found mostly in South and Central America and Mexico. This disease killed her aunt, who's from Colombia. The aunt lived with Hernandez and her parents for years while she was treated for the disease, which eventually killed her. The new book is both a history of Chagas disease and a memoir about growing up in an immigrant family, helping care for her aunt and coming out as bisexual, which her aunt was never able to accept.

In the research that you did about Chagas disease - the disease caused by the parasite, carried by the kissing bug - and in your own experiences helping taking care of your aunt who had this disease from when she was living in Colombia and came in contact with one of these bugs, what did you learn about the kind of economic health divide, not only between people, say, in the U.S., but between countries?

HERNANDEZ: Yeah. So this is a disease that disproportionately affects very poor people in Latin America, and that's usually folks who have spent time in rural areas where these insects are found. It really varies throughout Latin America, the kind of health care systems that are in place. I really focused on the United States and what was happening here, in part because I realized that if my auntie had come to the U.S. more recently, she would not have been able to access any kind of health care because of - she would be undocumented at that point. So I realized her situation was really unusual.

And when I started interviewing and finding families like mine in the United States, the really big struggle that they had had was accessing health care, either because they were undocumented or because - I interviewed a number of people who - they had green cards. But if you have a green card, you still have to wait five years to qualify for Medicaid. And so these are folks who are not working jobs that come with health insurance and so yet to access Medicaid. Even if they do have this deadly parasitic disease, they have to wait quite a number of years. So I really had a chance to see that, yeah, we have policies in place that make decisions about who we take care of.

GROSS: And your mother used to go to a health fair for some of her health care needs and for her mammograms.

HERNANDEZ: Yeah, all the women in my family did. I grew up without health insurance. My mother and my father both worked in textile factories in New Jersey. This was back in the '80s and early '90s. And so those jobs also did not come with health insurance, so the way that we would access health care is through health fairs that would sprout up periodically throughout the year. Sometimes they would be - they would happen at a church parking lot. Sometimes they would happen at a local park. And they would kind of offer basic services like screening people for cholesterol and diabetes.

My mother would also go - we found a hospital in Manhattan that offered free mammograms. So I remember when she was in her 40s, I would go with her to interpret because she only spoke Spanish. So I would accompany her to get that testing done. And the same was true for me. I grew up - I was luckily very healthy as a child. I did need to see the dentist quite a bit, so we used a dental clinic at a school, a dentistry school near my home. And yeah, so I grew up very much with a family that did not have access to health care, which I think gave me another understanding when I finally did start to interview other families with Chagas disease, the kind of struggles that they were going through to get care.

GROSS: Your aunt, who had Chagas disease, lived with you when you were growing up. She was like a second mother to you, but you were in conflict much of the time. She didn't approve of you. And she didn't approve of you even before you came out as bisexual. What were the points of conflict?

HERNANDEZ: I think she - this is, of course, my version of the story.

GROSS: Right.

HERNANDEZ: I think she brought with her to United States ideals of what a proper Colombian child would be like and would behave like. And I was - I did not meet those ideals. I was very outspoken as a child. I did not believe in being quiet and cordial. I was not interested in learning how to pour coffee for people. So I - you know, I did what she considered to be talking back and I thought of as expressing my opinions. I was - and then as I became older, even in high school, I was also very interested in politics. And again, just pretty being pretty outspoken. And she wanted me to be polite and demure and obedient. So I write in the book about, you know, when she would call me, when she would call for me, she wanted me to respond with si senora, which would be like, yes, ma'am. You know, so very, very polite, even within our own family.

GROSS: And formal. That sounds very formal.

HERNANDEZ: And very formal, yes. Yes, very formal. And I was, you know, I was watching American TV shows. And the teenagers pouted and shot back. And I was in love with Madonna, you know. And I wanted to dress like Madonna dressed. And so, yeah, even before I came out to my family, we had these points of conflict. And we had a lot in common, too. I loved school and very much wanted to go to college. And so we had a lot of points of similarity. So sometimes I think it was also a little bit like looking in a mirror, but not quite seeing yourself fully, for her.

GROSS: It sounds like she wanted to be very independent and to pursue a career, to be the first person in her family to go to college, but that she still insisted on the standards of girlhood, of traditional Colombian girlhood, of, you know, being, like, polite and learning how to pour coffee in the proper way and not talking back, being quiet.

HERNANDEZ: Absolutely. I think she herself, even though she never expressed it to me this way, I think she herself was a little bit in between both cultures as well, between what she wanted for herself and then the kind of experiences that she wanted to cultivate. And these were not actually experiences from her own family. Her own family was quite poor in Colombia. So I also think that it's what - she was striving for another kind of class experience than the one that she had growing up.

GROSS: Did she get that from TV (laughter) - from TV in Columbia?

HERNANDEZ: Yeah, I actually suspect that it was probably from the infamous telenovelas, the soap soaps operas and I think from magazines, from women's magazines of that time period. And - yes - and fantasies of what that lifestyle would be like of a more formal, elite family life.

GROSS: So I think I read this correctly, that in 2000 when you were filling out the census and - you had to put how you identify ethnically. Your mother urged you to write that you're white.

HERNANDEZ: My mother - yeah, absolutely - she sees us all as being white.

GROSS: Can you talk about that and how you perceive it and how she perceives it and what that means?

HERNANDEZ: Yeah. That was actually a really shocking moment for me because we had never spoken explicitly about whiteness and how we each identified. And I very much identified as brown, as Latina. I had mixed feelings about - I didn't feel comfortable identifying as mixed race. I don't feel like that's - in the U.S. context, I don't feel like that's the appropriate designation because it invokes usually a white parent and a Black parent. I think there's already ideas set like that. But there wasn't a box on there for me (laughter) - brown, Latina, diaspora Cuban Colombian. Like, that box didn't exist. But - so for me, it was shocking to realize that my mother very much identified as white. She actually identified my father as being even whiter than she is, which was also really surprising to me because he practices an Afro Cuban religion.

Part of what ended up happening later was realizing, yeah, I've actually have had a lot of privileges as a Latina. I usually - I don't get identified by anyone other than my mother as white (laughter). But I get identified - you know, people sometimes think I'm Greek. They think I'm Italian. They think I'm Pakistani. Like, there's - I've sort of been categorized. You know, depending on who I'm talking to, I've been categorized in different ways ethnically. But I don't get identified as being Afro Latina. And so I began to realize later, like, oh, yes, I've definitely have had an experience around privilege that we have not been talking about as a family, that I have not been recognizing myself either. But it was quite a shock to me to realize that she identified as white.

And, you know, years later - I haven't written about this - but I did - we did do the DNA - the infamous DNA test (laughter) with the saliva. And what was really shocking for me was I expected to turn up Indigenous. I expected that my mother would as well. I grew up often being told - and this is something that my auntie often said. There were oftentimes disparaging remarks about Indigenous people. And this was coming from Columbia, so I knew that I knew there was Indigenous ancestry. I was really shocked when my mother's DNA results came back and showed her to be half Indigenous, which means that, you know, somehow in this mix of her parents, there was quite a significant Indigenous ancestry, actually.

GROSS: Let me reintroduce you here. If you're just joining us, my guest is Daisy Hernandez. Her new book is called "The Kissing Bug: The True Story Of Family, An Insect And A Nation's Neglect Of A Deadly Disease." We'll be right back. This is FRESH AIR.

(SOUNDBITE OF BEASTIE BOYS' "TRANSITIONS")

GROSS: This is FRESH AIR. Let's get back to my interview with Daisy Hernandez, author of the new book "The Kissing Bug: A True Story Of Family, An Insect And A Nation's Neglect Of A Deadly Disease." The book is both a history of Chagas disease, which is spread by the insect known as the kissing bug, and it's a memoir about growing up in an immigrant family, helping care for her aunt who had the disease and coming out as bisexual, which her aunt was unable to accept.

You came out as bisexual to your family when you were 25. Your parents handled it OK, but your aunt did not. What was her reaction?

HERNANDEZ: She actually stopped talking to me. We didn't speak for about seven years. I...

GROSS: Oh, that's a really long time.

HERNANDEZ: It's a very long time, yes. Yeah, it's a very long time. And it was difficult because, you know, I've described it in my other book. I described it as being a kind of death because there was no connection at all. But I still knew about her life through my other - you know, through family members. And I sent her some gifts. She threw them away. She really struggled. And I don't think she struggled so much with my identity as being bisexual, but with the fact that I was having a relationship at that time with a woman because the moment that I started dating someone who was actually a transgender man - but I didn't tell my auntie that; she just saw a picture - and once she thought I was, like, you know, dating men again, whether transgender or not, she started talking to me again. We started having a relationship again. And we were able to be in contact. The last - I guess it was last two years of her life.

GROSS: You took care of her at the end of her life. You were in the hospital with her pretty constantly toward the end of her life. And I'm trying to understand what you must have been feeling since she didn't speak to you for seven years and she sent back your gifts. What was your relationship like with her at the end?

HERNANDEZ: It was actually quite beautiful. I think that I changed a lot in those seven years. I stopped needing her approval. I think I came to a place of acceptance that she was not going to accept who I was. I also - to be very honest with you, I did not expect her to die. I thought we were going to have many, many years together. So I think even when she was getting really sick, I did not believe that she would die. And I think that's hard to understand. But we had been with her in - so close to death so many times that it really just felt like that will never happen. You know, she's going to grow to be very old, so I didn't realize that they were actually the last years.

But, you know, I think for me, I had accepted that - you know, where she was at. And I focused more so on like, can we have a relationship of some kind, you know? I was living across the country at that point, so I wasn't getting to see her every single weekend. So when we were together, I was really appreciating watching movies, going shopping together, in some ways, actually having the kind of relationship we had not been able to have when I was younger. And I think a lot of that was that I changed my perspective about our relationship.

GROSS: Were you more accepting of her lack of comprehension of gender fluidity and sexual orientation, knowing the background that she was from and how she was raised?

HERNANDEZ: Yeah, I think that definitely made a difference. I think that - I think - although to be honest with you, I think a lot of what made a difference was, you know, having - creating my own chosen family and having friends in my life, both who were queer and allies, to kind of give me the support and love that I think I wanted from her that whole time. And so I think that made it possible to actually have more compassion for what she was going through and having friends and meeting people who had faced even worse situations with their family in terms of people who are in the LGBTQ community and who had been thrown out by family members, exiled from families - I think helped me to appreciate, like, OK, I'm not the only one who's gone through this. And it gave me a sense of compassion both for myself and for, like, our whole family.

And I think because of the disease, you know, as I said, she was so ambitious. You know, she wanted to have a better economic life than the one that she had grown up with. And I think I also finally was able to see, like, oh, she sees sexuality as part of that, you know? I was supposed to be an obedient daughter, and I was supposed to be straight and heteronormative, as well. It was part of a whole picture that she had for me and for her life, as well. And so I think I was able to have some compassion that, you know, she was not getting what she had wanted.

GROSS: Let me reintroduce you here. If you're just joining us, my guest is Daisy Hernandez. Her new book is called "The Kissing Bug: A True Story of Family, An Insect And A Nation's Neglect Of A Deadly Disease." We'll be right back. This is FRESH AIR.

(SOUNDBITE OF TERRY SLINGBAUM'S "WATER GAMES - RAVEL RE-IMAGINED")

GROSS: This is FRESH AIR. Let's get back to my interview with Daisy Hernandez, author of the new book "The Kissing Bug: A True Story Of Family, An Insect, And A Nation's Neglect Of A Deadly Disease." The book is both a history of Chagas disease, which is spread by the insect known as the kissing bug, and it's a memoir about growing up in an immigrant family, helping care for her aunt who had the disease and coming out as bisexual, which her aunt was unable to accept.

Can you talk about some of the generational differences in the Latino community over sexuality and gender?

HERNANDEZ: Sure. You know, the story that I often tell is actually when I came out to my mother, when I told her that I was dating women, that I identified as bisexual. And her response was - well, first, she almost fainted, actually (laughter). So I had to take a moment to make sure that she was OK. And when she finally regained her composure, my mother said to me, oh, this doesn't happen in Colombia. And I said, Mommy, there's queer people in Colombia. Oh, no, this doesn't happen in Colombia. And for me, it reminded - you know, it underscored that it was not only generational, but it was also in terms of countries, that she was not - my mother was going to say, OK, this has to do with the United States. My daughter being queer in any way has to do with the country that I've ended up in.

GROSS: Was that a way of saying - of your mother saying to herself, it wasn't my fault? It's not my daughter's fault. It's America's fault.

HERNANDEZ: Absolutely. I will blame this country (laughter) for doing this to my daughter. And, you know, it ended up being a wonderful educational opportunity. There's amazing LGBTQ activists in Colombia. There's definitely amazing progress that has been made on gender and sexual orientation in her own country. She just didn't know about it. As I said to my mother at the time, I said, you haven't been back in your country in almost 30 years (laughter). But she was holding on to a very specific idea of her home country from when she was growing up. And I think my auntie was, as well - talking about sexuality was very taboo for their generation. Even heterosexual sexuality (laughter) was very taboo. So the idea that I would - you know, I would not only identify as bisexual but that I would write about it, that I would speak about it publicly I think was multiple shocks from my mother's generation and my auntie's generation.

GROSS: Well, another thing that I think is very new is the use of the word Latinx, which is a gender-neutral nonbinary word that's been adopted by, you know, I think mostly younger people and people who are, like, gender queer. And so I'm interested in hearing about how you use that versus Latina or Latino or Hispanic, for that matter, and what kind of - like, what kind of reaction you get from people who are Latino and aren't so aware of the word or are resistant to a new word and think that the language is already adequate?

HERNANDEZ: Yeah, and it's true. This can actually be very generational as well. I love using the word Latina because I'm so happy to have a word that does away with referring to that kind of binary system of female and male. For a long time, Terry, I was actually using Latina to include men and everyone under that umbrella. So I would tell people I'm using Latinas, but that includes everyone because the expectation was that we would use Latinos with an O and that that would include women and folks who are gender queer or non-binary. But I actually really, in terms of using the word, I really pay attention to who I'm speaking with.

So when I'm back home with family extended cousins, I'm not necessarily using the word Latinx. And that's oftentimes because when you're in a family or in a community, you're not using the word Latina or Latino too often. You're actually talking about very specific countries. So, you know, my mother's from Colombia. My father's from Cuba. And when there are family and community gatherings, there's always references to very specific countries, you know, even teasing each other like, oh, that's so Cuban of you, you know. So it doesn't always necessarily come up.

And in Spanish, the word Latina never even really caught on when you're talking to someone in Spanish, especially people like my parents, who are working class - part of that working class Latinx community, they're usually in Spanish using the word Hispano or Hispanic. And if I'm, you know, it depends on what situation I'm in, but if I'm working as a journalist and I'm talking to someone, I'm listening and - for the words that they're using. So if they're using Hispano, I use that too. I don't feel like, as a journalist, that's my role to introduce new terms to them.

But in terms of my family, it just really hasn't come up, I think, because we're usually talking about such specific communities. But I think it's exciting. You know, I always tell people who are resistant to the word Latinx that I actually - I understand because I think we can get very attached to certain words. It's really exciting to actually watch language change as communities change and as experiences change.

GROSS: You know, it's funny because like, you know, French and Spanish, they're gendered languages. Like, table was a gender, and window as a gender. You know, like, all these inanimate objects have have genders. I found that very confusing when I was trying to learn French in school because, how are you supposed to remember what gender a table is, whether it's a leau (ph) or a la (ph)? And so I don't know. How do you deal with gender in languages where gender applies to objects that aren't even alive?

HERNANDEZ: That's a great question. I actually had a similar experience. I mean, I grew up speaking Spanish at home, but I would get the genders wrong. The one I remember is map. I would always la mapa (ph) and it's el mapa (ph), I think, if I'm remembering correctly. I would always sort of flip them around. And to me it seemed like I simply had to memorize the gender of different of objects. What's been funny for me now is - I don't know funny is the right word, but - has been sort of negotiating, you know, with my family in terms of language because my partner does not identify as female or male. And so when we first started dating, I couldn't use the word amiga, which is a friend, female friend. And it didn't seem - it wasn't also right to say amigo, a male friend. So I kept kind of referring to friendship. I have una amistad (ph) And that was sort of my way of like kind of getting around it for a little bit. But yeah, the languages have a lot of challenges. But I still think - I still stand by the fact that, like, it's exciting for us to figure this out.

GROSS: Well, Daisy Hernandez, it's really been a pleasure to talk with you. Thank you so much.

HERNANDEZ: Thank you.

GROSS: Daisy Hernandez is the author of the new memoir "The Kissing Bug." Tomorrow on FRESH AIR, we'll talk about the early years of the U.S. space program with historian Jeff Shesol. In his new book, "Mercury Rising," he writes about how American rockets were blowing up in test flights while Soviet satellites and cosmonauts soared through the heavens. He also describes the conflicts among America's first astronauts, in part over their personal conduct. I hope you'll join us.

FRESH AIR's executive producer is Danny Miller. Our technical director and engineer is Audrey Bentham, with assistance today Charlie Kaier. Our interviews and reviews are produced and edited by Amy Salit, Phyllis Myers, Sam Briger, Lauren Krenzel, Heidi Saman, Therese Madden, Ann Marie Baldonado, Thea Chaloner, Seth Kelley, Kayla Lattimore and Joel Wolfram. Our associate producer of digital media is Molly Seavy-Nesper. Roberta Shorrock directs the show. I'm Terry Gross. Transcript provided by NPR, Copyright NPR.