Call me Francisca | Translation

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Translated by MC Editorial

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[Daniel Alarcón]: This is Radio Ambulante from NPR. I’m Daniel Alarcón.

It was March 2002, and she was 20 years old. In her hands she held a home pregnancy test. She was alone. Back then, she still did not call herself Francisca, as the newspapers, prosecutors, and judges would later call her, and as we will also call her to protect her identity. For the same reason, the voice you will hear is the voice of an actress. We do not alter the words or the tone in which she said them.

Francisca was about two days late, and having a child was a dream.

[Francisca]: I always wanted to have children. I wanted to be a young mom, so I could enjoy it. I wanted to have a large family as I had growing up. 

[Daniel]: She grew up in a rural area, in the Maule region right in the center of Chile. She is the youngest of nine siblings, and that was her idea of happiness: children running through the fields, playing under the open sky. They lived in an adobe house, they went to a small school in the area and, aside from that, they worked the land with their parents. At night they lit the wood stove to protect themselves from the cold. 

It was a simple happiness. They had little, but they did not need much. And when she got married at 18 and went to live with her husband, she dreamed of repeating it. That day in 2002 when she held the test with shaking hands, she had been trying to get pregnant for over a year.

[Francisca]: And when I saw those two lines came out, wow, I was jumping on one leg. There was no shadow over me that day. I was already loving that little baby who was inside me. 

[Daniel]: She went to the nearest health center, desperate to get a blood test to confirm it. With the results, she called her parents and her eight siblings to tell them. Everyone was happy with the news. Then the nurse told Francisca that she had to have more tests to confirm that the pregnancy was OK.

[Francisca]: In other words, to prevent any problems, I was going to do all the exams, everything the midwife asked me to do. All I wanted was to have a normal pregnancy. 

[Daniel]: Among the exams, there was one that she had never done: the ELISA test, to detect HIV. All Francisca knew about the virus was the little she had been told at school—practically nothing. Maybe a brochure, the vague idea that it could have to do with promiscuity, prostitution or homosexuality . . . the prejudices about its transmission that existed in the area where she lived, and in much of the world, during those years.  

She knew so little about HIV that she even believed anyone could get it just by touching someone, and from that moment on the person would only have a few months to live. None of this is true, but it was what she thought when the nurse told her that she had to do the exam again. Francisca went to the medical center, not fully understanding what was happening. And it was there that she received the news that would change her life. The nurse told her without much preamble.

[Francisca]: “Listen,” she told me, “You know what? The HIV test came out positive and, well, you have HIV.”

[Daniel]: She said it like that, in the most natural way. And she went on to say . . . 

[Francisca]: “We are going to register you so that you can start taking the… the medicines, the medications so that your child is born without HIV . . .”

[Daniel]: Francisca could hear, but the words began to be little more than noises.

[Francisca]: She was talking, but like uuuh, I left just like that. I didn’t hear anything else . . . Yes, as if they were playing orchestra music, like this (hums a melody), just like you’re somewhere else. Just as if you were listening to Beethoven. Just as you go up, go down, with the same notes.

[Daniel]: She felt as if she had entered a parallel reality, as if everything were a movie where she was the actress, and suddenly the music exploded. She saw the nurse in front of her, moving her lips, saying words…

Tests… precautions… treatment… risks…

Stunned, she left the place without fully understanding what was happening. The only thing she knew is that nothing in her life would be the same. 

We’ll be back after a short break.

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[Daniel]: We’re back with Radio Ambulante. Our producer Lisette Arévalo and our editor Nicolás Alonso investigated this story. 

This is Nicolás. 

[Nicolás Alonso]: Francisca left the medical center devastated. As she tried to get home, she felt an anguish that she had never felt before. She had understood from the nurse that she had to go to the Curicó Hospital, located in a larger city in the area, where she would begin treatment so that her child would be born without HIV. But to her, those were empty words. She believed nothing could go right.

[Francisca]: Fear. Anger because I didn’t know where it came from, why it had happened to me. I felt pain because I didn’t know if I would ever get to know my child and I thought that maybe he wouldn’t even make it. 

[Nicolás]: When she got home, she collapsed.

[Francisca]: Crying a lot. What I am going to do? Darn it, my dreams. And now this happens, I’m going to be left without a child. My child is going to be an orphan, maybe I won’t even give birth, maybe I won’t even get to meet him . . .   

[Nicolás]: Francisca could only imagine tragedies. But when she broke the news to her husband, he barely paid any attention.

[Francisca]: “No, oh . . . well. What can we do, well, we have to keep fighting.” That was the answer. And I said, “Hey, and what’s with him?” I said, “He doesn’t have . . . what is going on?”

[Nicolás]: Francisca couldn’t believe that her husband, whom we’ll call Sebastián, didn’t say anything else . . .  and he didn’t even ask her any questions. Although it wasn’t the first time his behavior threw her off. She barely recognized the man she had married two years earlier. 

They had made the decision to marry after being together for less than a year. Francisca’s parents were overprotective and didn’t like her being in a relationship. They allowed her to see him for only an hour a day, at her house. One day, she told Sebastián she wanted to go to work, and he told her that instead, they should get married. He said they would be much off better that way, without her parents on her back all the time. To Francisca, the idea of having her partner, her house, her children, sounded like freedom. Without much thought, she agreed.

[Francisca]: I thought he could be a fighter just like me. In other words, we were going to fight together and it was going to be easier for me to get to that world that I wanted, and all that. 

[Nicolás]: In that world she dreamed of, she would no longer live in the countryside and perhaps she could study to be an architect. It was a wish she’d had since she was a child, when she walked through the nearby towns and she saw that all the houses were the same. Square, with the same triangular roof, all next to each one. There was something about that uniformity that she disliked. She wanted to build round, irregular houses that would break up the monotony of the landscape.

But that idea began to fade very quickly.  

[Francisca]: It was a very abrupt change; he became very . . . very possessive or very chauvinistic. And I wanted a partner; I didn’t want to be a slave. I was never a slave in my house, nor did my parents demand anything of me.

[Nicolás]: Cooking, cleaning . . .  in a second, everything became part of her tasks. Only hers. And it bothered her, but at the time she felt that, once married, she had no choice but to stick with her husband. 

[Francisca]: I don’t know, but it’s like: you did it and now you put up with it. I mean, like . . . there’s no turning back.

[Nicolás]: They had been together only a few months, and now they had almost nothing in common. The only thing they agreed on was that they wanted to be parents, although Francisca had a hard time getting pregnant. That’s why, the day her pregnancy test came out positive, her body could barely stand so much happiness. Then the exams results came, the fear, the uncontrolled weeping, and her conversation with her husband, when he didn’t say anything.

[Francisca]: In other words, I thought that the father of my child was also going to say, “Well darn, it’s not my fault. It wasn’t me” . . . I don’t know, but no, no, he didn’t react at all.

[Nicolás]: He didn’t even react when she told him that he had to go to the hospital also, to get an ELISA test. He just replied, all right.

The first two weeks after the diagnosis, Francisca kept wondering how she had gotten HIV. Sebastián also tested positive, and Francisca began to suspect that it had been him. Before starting their relationship, he had been working in different parts of the country. But she had no way of knowing and he didn’t seem willing to answer any questions. Francisca lived in tears. but soon she realized that she could not go on that way. 

[Francisca]: I could either cry, or . . . or start taking care of what I wanted so much, my pregnancy. And go forward, and what happened in the past or whose fault it was . . . well, it didn’t matter.

[Nicolás]: It became a subject that Francisca did not talk about. She made the decision not to tell anyone what was happening to her—not her parents nor her friends. Sebastián seemed increasingly distant. And Francisca was already beginning to understand that she would have to go through the process that was coming by herself, both with the virus and with her pregnancy. 

The bus ride to the Curicó Hospital, where her treatment would begin, lasted just over an hour. Once there, one of the doctors took a blood sample to measure her HIV viral load, and told her that if she followed the treatment properly, her child would not be born with the virus. But he didn’t explain that her medications were also protecting her. 

It is something that may sound obvious today, but it was not then, and less so in a rural area. Since the late 1990s there have been effective antiretroviral treatments against HIV that prevent the patient from developing the acquired immunodeficiency syndrome, or AIDS, which only appears in the final stage of the infection. What leads to death is not HIV, but rather AIDS. But with adequate and timely treatment, patients can not only have a completely normal life, but also become “undetectable”—that is, because of their low viral load, there is no longer a risk that they will transmit it to others through sexual intercourse. 

[Francisca]: In other words, if you take care of yourself and take your medication, you’ll be fine. They didn’t tell me that. I suffered so much during the pregnancy, so much. I cried so much because I thought I was going to die. And I said, why didn’t they give me all that information, why didn’t they let me enjoy that pregnancy?

[Nicolás]: Between 1990 and 1999, the rate of infections per 100,000 inhabitants in Chile nearly tripled. But pressure from conservative groups kept the subject taboo in many places, among educators and doctors.   

And what Francisca felt the most was guilt and shame. She was scared, nauseated, weak from the medication, so the pregnancy she had longed for so long became torture. But the hardest thing was loneliness. Sebastián never accompanied her to any checkups; he said those were women’s things. And Francisca didn’t ask anyone else to go with her.

[Francisca]: Because I was afraid that it would be known, that someone else would know about it. 

[Nicolás]: In the area where she lived, almost everyone knew each other, and she was terrified that they would discriminate against her. For this reason, she also did not approach any HIV foundation to get a better understanding of the virus or meet others in her situation. She did not work, because her medical checkups were very frequent and she could not justify them, so she had almost no money.  Sebastián— who was a seasonal worker—provided for the round-trip tickets to Curicó for the medical visits. 

At those appointments, they measured the viral load in her blood to ensure it remained at an undetectable level, and thus the risk of transmission to the baby remained low. And her tests showed that the treatment was working perfectly.

 In the midst of everything, knowing this made her feel a little better. And that’s how Francisca spent those months, coming and going to and from the Curicó Hospital. There were days when she managed to feel happiness again at the prospect of being a mother. Other days, fear consumed her. To minimize the possibility of the baby getting HIV, the delivery would have to be via C-section. So she scheduled it for November 2002. 

The day another life would begin for Francisca.

Francisca traveled to the Curicó Hospital two days earlier, in order to be prepared for the intervention, which would be on a Tuesday. 

[Francisca]: And with the movement, on Monday afternoon my water broke and . . .  and my delivery came early. 

[Nicolás]: It was around 8 p.m., and the doctor and nurse who had always cared for her, with experience with HIV patients, were not there. So Francisca was received by the nurse on duty. She told her that she would have to take her to another room, where they would administer serum with some medication to protect the baby during the procedure. That walk through the hallways of the hospital, carrying her own bag, was the first sign of things to come. Suddenly, the nurse began to say:

[Francisca]: That people like me couldn’t have children, that we should be sterilized, that when I found out I was pregnant and HIV-positive, I should have had an abortion. I should not have continued the pregnancy. 

[Nicolás]: Francisca didn’t answer anything. She could barely walk because of the contractions, which were getting more and more painful. But the nurse continued . . . 

[Francisca]: What kind of a future was my child going to have, that he was going to be an orphan, that perhaps I didn’t think about that because my child was going to die. 

[Nicolás]: Francisca tried to concentrate on breathing and controlling the pain, while they continued looking for a room. They could have gone to the maternity ward, but they didn’t take her there. Francisca thinks it was because they didn’t want her to be around other pregnant women. They spent about fifteen minutes like that, wandering around, until they returned to the same gynecology room where they had started. 

The nurse placed her away from the other patients and began to administer the serum. Francisca still didn’t say anything, but at that point she was already terrified.

[Francisca]: I didn’t have much information about anything, so I didn’t know if holding my baby inside my belly for a long time could cause him any harm. So I had many fears and I had no one to ask. 

[Nicolás]: The pain had become almost unbearable, but she tried to put all her energy into her baby, into having it be born well, into making everything turn out well. 

At midnight, the nurse finally took her to the operating room, where she would have a C-section. Then the doctor on duty came in and there, in front of Francisca, she began to give instructions to the staff: 

[Francisca]: “Now, please, everyone here be careful, everyone with their gloves on, everyone with their corresponding protection. Nothing is to be touched, because she is HIV positive. So you know what the protocols are. And everything that is used here needs to be thrown away.”

[Nicolás]: They were so covered with masks, gloves, and safety gear that she couldn’t see the faces of any of the five people in the room. Francisca felt she was being treated like a highly infectious patient. 

[Francisca]: As if I were a high-risk person. That is, as if touching me or touching any of my clothes would get them infected.

[Nicolás]: The protocols for childbirth of a woman with HIV are not very different from any other: a clean room, appropriate clothing and precautions in contact with fluids. But the doctor seemed uneasy about having to do the C-section.

[Francisca]: The doctor asked, “So, what’s going on? And why, if there is someone specialized in this—I don’t handle these things.” In other words, if he had a patient with HIV, he was not going to take care of her because he was not trained for it.

[Nicolás]: Francisca started to cry. She had never felt so vulnerable in her life. A male nurse came over to reassure her and wipe away her tears. It was a single kind gesture, just before they put the mask on her and asked her to start counting until she fell asleep. Francisca did as she was told: one, two, three, four, five . . . 

And everything got dark.

When she opened her eyes, the first thing she heard was her baby.

[Francisca]: I heard him cry. And then they told me that they were going to sew me up, that everything was fine, and he had been born well . . .  And that now they had to take him to neonatology because of the whole issue of risk. They told me they were going to sew me up and the next day, depending on how everything was, I could see my son.

[Nicolás]: But Francisca wanted to see him right away. One of the nurses came over for a moment with the baby in her arms. It was a boy. So, half asleep, with her abdomen still open, she saw her son for the first time, before he was taken away for tests. The doctor stitched Francisca up and she soon fell asleep again. 

She woke up about 7 hours later, around 8 am, in the recovery room. She felt distressed. Sometime later, when a nurse came to see how she was doing, Francisca began to ask about her son. The nurse replied that she should not worry, that he was fine, that he did not have an HIV viral load, and that she would be able to see him soon. 

And she added something that Francisca did not expect. 

[Francisca]: “Don’t worry, everything went well,” she tells me. “Your sterilization is perfect,” she said . . . 

[Nicolás]: Your sterilization is perfect. 

[Francisca]: “And you won’t be able to have any more children . . . So everything is OK.”

[Nicolás]: And you won’t be able to have any more children. 

At first, Francisca did not fully process what the nurse had said. She said it so naturally—like something minor, almost routine—that she imagined this must be the normal procedure, what the law indicated for all pregnancies like hers. Something that simply was not to be questioned. In fact, Francisca would believe that for a long time.

At that time, her anxiety only allowed her to focus on one thing.

[Francisca]: I had the pure need to be allowed to see my son. I wanted nothing else. It was the only thing that concerned me: that they let me see him. 

[Nicolás]: When she was taken to neonatology, they said that she only had 15 minutes to see him and that she couldn’t move him from there. He was still under observation.

But those 15 minutes were enough to be happy.

[Francisca]: I couldn’t stop . . . looking at him, watching him. Figure out his features, the details about him, everything. I mean, I did the . . . a full scan. 

[Nicolás]: That day, Sebastián went to visit her and meet their son. Francisca told him that she had been sterilized, and when she said it for the first time, she felt a sadness that she had blocked until that moment. Her husband also regretted the news. Despite the problems they had, they dreamed of a large family. 

That was the only visitor she received during the three days she was in the hospital. She did not want anyone to see her child in the neonatal ward. She was in pain and still feeling the effects of the anesthesia, but she had to manage on her own. It seemed to her that nobody wanted to have any contact with her.

[Francisca]: The nurse didn’t even touch me. In other words, “Here are the dressings, and you can go to the restroom and clean yourself up.” I had to prepare everything by myself, there was no support at all. 

[Nicolás]: Luckily, she shared a room with five other women who supported her and gave her advice. What hurt her the most was not being able to breastfeed her child, having to give him formula to protect him from HIV, which can be transmitted through breast milk. After her discharge, she was happy to finally be able to enjoy him without glass or rooms or nurses separating them, but she was also afraid. 

[Francisca]: I mean, they told me I had to keep everything separate. Everything that belonged to my son had to be only for him, and my things only for me. 

[Nicolás]: She had been told that at the hospital.

[Francisca]: I didn’t use the boy’s cup. I didn’t use his towels. His clothes were all washed separately; I didn’t wash them with mine.

[Nicolás]: HIV is not transmitted that way, but by direct contact with blood and other body fluids such as semen, vaginal fluids or, as we said, breast milk. The virus only enters the body through wounds or mucous membranes, so there is no risk from hugging, sharing food or other everyday situations. This was already known in 2002 and had been known since the 1990s. But Francisca followed all the instructions she had been given at the hospital. At times, she felt that her very existence endangered her child. And the words that the first nurse had said to her while they were looking for a room to give her the saline solution kept echoing in her head. 

[Francisca]: It wasn’t a whim that I made up, no. It was a nurse who was telling me I was going to die and how could I have even thought of such a thing. So a year later I still felt guilty for having had a child and . . .  and that I was possibly going to leave him an orphan.

[Nicolás]: And with so much anguish that she carried, she didn’t even think about what the other nurse had told her—that she wouldn’t be able to have any more children. It was as if she didn’t have the ability to care about it. Even the fear of catching a cold was a more urgent fear. 

[Francisca]: So I was making the most of everything that had to do with him, because I didn’t want to miss a single moment of, of his life, because I thought I was going to die. 

[Nicolás]: She had convinced herself that she would not have more than a year to live. She even thought about who would take care of her child when she was gone. A conversation with someone with no prejudices who knew about HIV would have been enough for those fears to vanish. But after the way she’d been treated at the hospital, Francisca would not open up to anyone.

[Francisca]: I thought, “And this is going to happen every time I go to a hospital? Are all the people going to be so afraid of touching me?” And I didn’t search for more information, either. It was very discriminatory, so I couldn’t expose myself to anything.

[Nicolás]: But she had to go back to the hospital every three months or so for her son’s checkups. They took blood samples to assess if she had a viral load, and to monitor the effects of the pills she was taking to reduce the risk of transmission. In Francisca’s new life, nothing was more important than those appointments.

[Francisca]: Even so, and with all the fear that I had of the hospital and all that, I kept going forward, making sure he received the best care and that no one would take him up. In other words, I don’t know where I got the strength and the courage to say, “Not so fast, no way. They did this to me, but they won’t touch him.” So I protected him with all my strength. 

[Nicolás]: She was not going to let anyone discriminate against her son.

The appointments always went well. The pediatrician congratulated her because her son was healthy and strong, and Francisca was also being examined. It was during one of those hospital visits that someone first helped her feel more at ease about her condition. They had to draw blood, like many other times, but the nurse who attended her that time seemed relaxed, she didn’t even wear gloves, and Francisca found it strange . . . so she asked her.

[Francisca]: “And you,” I asked, “aren’t you afraid?” And she replied, “No,” she says. “Why should I be?” she asked. “You are a person like me; there is no risk. I don’t have any injuries, so there is no risk,” she says.

[Nicolás]: “You are a person like me.” That phrase, which the nurse said as something obvious, meant a lot to Francisca. For the first time, someone treated her like a regular person who was just going to get examined.

[Francisca]: The truth is that I felt a great relief. I said, “At least she is giving me another point of view on this. It’s not so bad and . . . and I can live and carry on with this.” 

[Nicolás]: A year and a half went by like this, coming and going to the hospital. When she went for her checkups, she didn’t usually talk to anyone, but she began to notice that in the waiting room there was always a young man watching her. He was there when she went in and out of the doctor’s office. On one of those visits, the young man approached her to talk, and told her that he belonged to a network of groups called Vivo Positivo, which was engaged in providing information and accompanying people with HIV. 

[Francisca]: He was kind of watching me, he was watching me, and as I went to the consultation, he was waiting for me and little by little he started talking to me, he was asking me things, and little by little I started to open up to him. 

[Nicolás]: Every time she went to the office, she met him and they talked for a few minutes. Until one of those times, he asked her a question. 

[Francisca]: “Well, and what protection do you use?”

[Nicolás]: He was referring to what contraceptive method she used. 

[Francisca]: I told him, “No, they sterilized me because with the pregnancy . . . ” “What do you mean?” he asked. “Why did they sterilize you?” “I’m not supposed to have any more children because I’m HIV positive.”

[Nicolás]: The young man looked at her with surprise and interrupted:

[Francisca]: “No, that is totally illegal. They shouldn’t have done that.” 

[Nicolás]: By that time, Francisca was convinced that it was the usual procedure for all mothers with HIV. She had gotten that idea because of the way they communicated it to her and because no one asked her if she consented. She had not signed any documents, nothing at all.

Francisca froze, trying to connect the dots in her head. The young man saw her so confused that he told her the best thing was for her to go to the NGO’s office in Curicó. There she could tell her story in peace, in a safer environment. It was not the first time they had heard such a testimony. Just then, they were preparing a report that included cases of women like Francisca, sterilized without giving their consent.

Knowing there were others like her gave Francisca the strength to dare to speak, for the first time, about what had happened to her. She wanted to know the stories of those women, to know if they had been told the same things, if they also lived in fear of being discriminated against by the health system.

It was the first step. She had no way of knowing everything that would come later.

[Daniel]: We’ll be back after a short break.

[MIDROLL]

[Daniel]: We’re back at Radio Ambulante. I’m Daniel Alarcón. Before the break, we heard how Francisca, a Chilean woman with HIV, sterilized without her consent, learned that she had been the victim of something illegal.

And that there were other women like her, in other parts of Chile. That gave her the strength to dare to talk to strangers about her story.

Our producer Lisette Arévalo picks up the story.

[Lisette Arévalo]: Francisca told her husband what the young man had told her in the hospital, and they went to the NGO in Curicó, where she talked for the first time about everything that had happened to her. A month later, they traveled to Santiago to meet Sara Araya, the manager of gender issues at Vivo Positivo, a network of various foundations throughout the country that provided counseling and support to people with HIV.  

Sara is a nurse technician and had been working with the network for five years. She still has a very clear memory of that first meeting with Francisca.

[Sara]: At that time, Francisca was . . . very quiet. She didn’t have much information about what was going on. They knew that they were people living with HIV . . .  and that they had to take a medication at that time and nothing else. 

[Lisette]: Sara explained to them that it was not strange that there was still a lot of misinformation about HIV and its treatments in far-off rural areas, even within the medical field. She told them that, although work had begun on medical protocols on HIV since 1990, the taboo caused some doctors to give incomplete or wrong information about how to live with the virus. Many things that Francisca had been told were wrong. There was no need to separate her utensils or wash things separately.

Francisca could barely contain her tears when Sara explained those things. Almost everything she said was a relief, but at the same time, she felt anger—all those years living in fear of touching her son too much, of making a terrible mistake when cooking, washing, or any other domestic task.  All those years feeling that she was going to die.

[Francisca]: I suffered a lot; I suffered a lot with everything. The discrimination, everything, like they punished me too hard this time. Just for being HIV positive . . .  The suffering and pain they put me through was too much. 

[Lisette]: After Sara resolved her doubts about care and risks, they came to the topic for which they had traveled there: sterilization. Francisca told her everything: the nurse’s cruel comments, the doctor’s attitude, her anguish the next day, how casually they had told her, as if it were just routine. And how she, confused by everything, had not even complained. She had not even gotten angry. 

[Sara]: We told her that what they had done to her was a violation of her sexual and reproductive rights, that she should not have been sterilized, regardless of her HIV status.

[Lisette]: Francisca listened carefully.

[Sara]: And that there was, there was a chance that we could take the case to trial.

[Lisette]: Sara told her that between April and May of 2002, Vivo Positivo, the ARCIS University of Chile and Flacso Chile had surveyed a hundred women with HIV.

Of these, 31 had been sterilized, 24 after receiving their positive HIV diagnosis. Like Francisca, four other women claimed they had never given their consent, and nine said that the reason for their decision had been pressure from health personnel. 

In the following years, that situation would be investigated by Vivo Positivo in conjunction with the Center for Reproductive Rights, an international NGO of lawyers and activists who defend abused women around the world. And they have documented cases of sterilization of women with HIV in the Dominican Republic, Mexico, Venezuela . . . 

This is Carmen Martínez, their manager for Latin America and the Caribbean. The Center had also been monitoring cases in Chile. 

[Carmen]: Although, of course, no policy has been identified coming directly from the Ministry, from state entities, issuing a mandate to sterilize HIV-positive women, what did happen is that, uh . . . within the institutional scheme of reproductive health services, there was a stipulation that has to do with cultural aspects. 

[Lisette]: According to Carmen, two central aspects influenced this: prejudice towards people with HIV and the idea that doctors could make decisions on behalf of their patients. Before 2000, even the law that governed surgical sterilization said so: it gave doctors the power to decide for their patients when it came to “serious cases.” Carmen explained that, at the time, the types of cases for which sterilization was suggested were not entirely clear, since the law allowed for the possibility of doing it for “specific medical issues.”

[Carmen]: Even though HIV was not explicitly included in the medical indications for sterilization, doctors usually interpreted “other medical causes” to include HIV, right? And they used this serious case provision to justify the sterilization of women living with HIV. 

[Lisette]: In the year 2000, the law changed: it was determined that sterilizations must always be authorized in writing by the patients, and the medical team must inform them in advance of other alternatives, possible complications, and the probability of reversing the procedure. The law even said that the person could retract her decision minutes before being operated on. 

But it is one thing to change a law and it’s another thing to change a culture. When Francisca was admitted to the hospital in 2002, none of this was enforced. 

That afternoon at the Vivo Positivo office, Sara explained some of those things to Francisca, who couldn’t stop thinking about all the terror she had experienced during that year and a half. They had taken away the possibility of having more children, and also of enjoying the only one she was going to be able to have. 

Sara told her that she believed the only way to bring about concrete change was to sue the medical team that treated her at the hospital. Her case was the most recent one they knew of, the time had not expired, and she had the elements to sue. And Francisca answered yes, she wanted justice. 

[Francisca]: The anger for what they did to me, for how unfair they were to me. And another thing: so it would not happen again. So that all this would end and no woman would go through it again.

[Lisette]: She set one condition: she would fight with them, but no one, for any reason, should ever know her identity. Not her face, nor her name, nor her family. She would not give television interviews, nor would anyone hear her voice.

From that moment on, she would be called Francisca.

They agreed that Sara would be the visible face of the case and speak for her. They had no idea what chance they had of winning, but fighting the battle could set a precedent. 

[Francisca]: In other words, the fact that there was already a known lawsuit, because it should no longer be a matter of the people—now women themselves would pay more attention when they were going to have a child. Or the doctor would think twice before sterilizing another woman. 

[Lisette]: From that day on, Vivo Positivo began to work closely with Francisca and her husband. They were invited to talks, consultancies. The first thing was to help them overcome their own fears. Francisca was eager to learn about HIV, but her husband had a harder time. Sara remembers that he did not want to take his medicine and they had to insist, over and over again, for him to do so. He couldn’t accept the idea of needing medication in order to survive. 

[Sara]: And we had to work with him and teach him that this disease does not discriminate against anyone. This disease reaches the rich, the poor, men, gays, sex workers . . . everyone. And it doesn’t warn anyone. 

[Lisette]: Preparation of the legal case was slow. Vivo Positivo did not have the resources to pay for lawyers, so the Center for Reproductive Rights offered to advise them and pay for their defense. 

One of the first steps was to take Francisca to a gynecologist, to assess what type of sterilization she had undergone. It was something very delicate, because with everything she now knew about HIV and its treatment, Francisca had regained her dream of having more children. 

[Francisca]: I had the hope the sterilization performed on me was operable and . . .  and that that tube that had been removed could be fixed but . . .  no, it was not possible. 

[Lisette]: There are cases where tubal ligations can be reversible. But not in Francisca’s case. Whoever operated on her made sure that it was not.

The doctor who examined her was categorical.

[Francisca]: The cut they did was very aggressive. The doctor told me, “It seems that they were cruel to you,” he said, “because they cut more than what was needed.”

[Lisette]: Francisca still has a hard time talking about it. She felt they wanted to make sure that she would never, ever, for any reason, be a mother again. Even so, she fantasized about the idea that if they won her lawsuit, they would have to help her somehow to reverse the operation. 

[Francisca]: All I wanted was to be a mother again. In vitro fertilization or I don’t know, some treatment, something . . . 

[Lisette]: It was what mattered most to her, what counted as justice.

As part of the lawsuit, they asked her to write a letter recounting everything she had experienced. The idea was to present that testimony to the judges so that they would know her story firsthand, without her having to be exposed. Francisca remembers that process—sitting down to put into words all the pain that she had experienced in recent years—as something cathartic. 

[Francisca]: I mean, I felt like I unloaded all my sorrow, my anger, everything. As if I had the hope that, that something would be achieved . . . and at least it would be noted that someone was fighting for their, for their rights, for their . . . for their rights to have freedom to decide.

[Lisette]: Francisca filed her criminal complaint in the Curicó Guarantee Court on March 2007. In it, she sued the doctor who treated her and the others responsible for her sterilization for “serious, very serious injuries.” The investigation lasted more than six months, and her husband, her doctor, and the nurses who treated her testified. But on the day of the hearing, in June 2008, Francisca’s defense received a surprise: 

[Carmen]: Well, what the doctor says is that she did give her verbal consent. Deliberately lying about what actually happened.

[Lisette]: That’s Carmen Martínez again. 

[Carmen]: Even if it had been true, ah, that they had asked Francisca at the very time of the C-section just before applying the anesthesia, they are trying to get the patient to basically give consent by whatever means, right?

[Lisette]: Entering the operating room, with contractions and the fear of dying, treated as a high-risk patient . . . Francisca insisted and continues to insist that the doctors lied. That no one ever asked her. And doctors couldn’t make that decision: we must remember that after the year 2000, they needed written consent. 

During the trial, the doctor argued that it was common for sterilization to be requested at the time of a cesarean section. And that it was not until 2004 that the hospital began to have a form to request written consent. Almost all the nurses supported the doctor. For example, one said that she did not remember Francisca, but, in a second statement she stated that she remembered her verbal consent. She also said that she was asked several times before she had the C-section; another admitted that she, at least, had never informed Francisca of the procedure.

With all that on the table, the prosecution asked that the case be closed. 

[Carmen]: All the probative value, or weight, was given to the doctor’s testimony over Francisca’s testimony.

[Lisette]: The prosecution argued that the doctor acted under the scientific principles of medical practice and that Francisca’s rights were not violated. 

Francisca was not in court when the verdict was given, but Sara Araya was, along with the Vivo Positivo team. It was a very hard time for everyone.

[Sara]: Sad, sad for us as organizations. We thought that Chile was a fairer country then.

[Lisette]: Leaving the courthouse, Sara and her companions dodged the press, and once they made sure no one was following them, they met Francisca in a safe place, where no one could see them. She was crying. 

[Francisca]: Disappointed, but I also expected it. I already knew that I was going to lose the case in Chile because I didn’t . . . I mean, you’re in a discriminatory country, so . . . you are not going to win there.

[Lisette]: A few days later, Francisca’s lawyer appealed the ruling before the Talca Court of Appeals, arguing that Francisca had never given her consent, either in writing or verbally, that the sterilization was not necessary, and that her life was not in danger. But the appeal was rejected, and so the case was definitively closed.

Frustrated, Francisca did not want to think about the case anymore and focused on working, taking care of her son, and taking care of herself. She attended computer workshops and talks at Vivo Positivo on sexual and reproductive rights. She had lost hope in justice, but she kept dreaming of being a mother. 

[Francisca]: I kept that . . . dream in my head, that something could happen. I still thought I could beat that operation. I still felt like . . .  no, everything fails. How is this operation not going to fail?

[Lisette]: Meanwhile, the Center for Reproductive Rights was beginning to prepare a new strategy for her case. Since the Chilean justice system had ruled against them, the only thing left was to take it to international organizations. Submit it to the Inter-American Commission on Human Rights, the IACHR, and sue the State of Chile for not respecting her rights to a fair judicial process, not to be discriminated against, not to be subjected to cruel treatment, and to have access to information about her sexual and reproductive rights.

Of course, all that would be a long and very exhausting process. Sara recalls that it was difficult to convince Francisca. She was afraid that everyone would find out she was the woman with HIV who had sued the State. And her husband was not persuaded to continue, either. 

[Sara]: But at some point, we managed to convince her to sign and that it would be a benefit for her, for her son, and for many other women.

[Lisette]: However, by that time, her relationship with Sebastián had deteriorated greatly. He was becoming more and more aggressive, and they blamed each other for what had happened. When they separated, late in 2011, Francisca and her son went to live with her parents, in the house where she had grown up, where she had been happy with her eight siblings.

Sometimes she felt that she couldn’t take it anymore. That she didn’t have the strength to continue with the lawsuit, the attorneys, always thinking about the issue . . . In those moments, Sara tried to cheer her up, to remind her why they were doing it all.

[Sara]: Many times. And there we were. Darn: “We’ve been at this for so long, how can you give up now? But if you want to give up, we’ll drop everything now.” But she learned . . . she became very empowered. 

[Lisette]: Processes filed with the IACHR are slow. Each year, the agency reviews hundreds of claims of human rights violations in its 24 member countries. The Center for Reproductive Rights and Vivo Positivo presented Francisca’s case in 2009, two years later the State of Chile was asked to make comments, and it wasn’t until 2014 that the IACHR accepted the case for processing.

By then, Francisca had been sterilized for 12 years and was struggling to raise her son while doing with different, very demanding, jobs. Neither her mother nor her father nor her son knew that she was living with HIV, that she had lawyers, much less that she was suing Chile before an international court. That other life, her life as Francisca, was hers alone and no one else’s. 

[Francisca]: They were very complicated years to continue the case, because I kept fighting, kept insisting. And at the same time, I kept hiding. You have to hide all this and continue living and fighting at the same time. As if you didn’t have a face, as if you weren’t . . . It’s complicated, it’s very complicated . . .  

[Lisette]: In the lawsuit before the IACHR, Francisca’s lawyers asked for various forms of reparation. They asked Chile to design measures to reverse all discrimination against people living with HIV. And to provide training on sexual and reproductive rights, with a gender perspective, at health centers and in the agencies of the country’s legal system. 

They also asked for financial compensation for Francisca, for all the physical and psychological damage; as well as access to comprehensive health care for her and her son; and scholarships and support through job training or in entrepreneurial activities they might carry out, among other things. 

[Francisca]: And I started looking for welfare for my son; that is . . . if the Government had decided to . . . it had made a decision for me. So now, I said, well, now it’s their turn to help me, to ensure my son’s future. 

[Lisette]: Finally, they demanded that those responsible for her case be investigated and punished. And one more thing, which was very important to Francisca: that the State apologize publicly. Even if they didn’t say her real name.

Three more years passed until the hearing, which the IACHR set for March 2017, in Washington DC. With the date confirmed, the lawyers from the Center for Reproductive Rights began to prepare Francisca for what was to come. Because she would have to travel and speak in front of everyone.

In the room, there would also be a representative of the Chilean Undersecretary of Human Rights, a doctor from the Ministry of Health, and the ambassador, Óscar Alcamán Riffo. 

Francisca had to be prepared for everything. It would be the first time she would fly in a plane and her first time outside of Chile. And when she landed in Washington with Sara and her son, then 14, she would see a city covered in snow. Although Francisca was going to face the Chilean State, her son thought they were only going on a vacation. 

The day of the hearing, Sara and Francisca got up at 7:30 in the morning. They met with the Center’s lawyers for breakfast, and they talked about what would happen. They also went over everything they had to say at the hearing. 

[Sara]: Francisca was nervous, and we told her to be calm and that she was a brave woman. And we thanked her very much for having gone this far, to the end. And this was going to be the end because this was where Chile was going to be held accountable.

[Lisette]: She listened to them and tried to calm down. It gave her a little peace of mind to know that the IACHR had prepared a booth for her from which she could tell her story without being seen.  

[Francisca]: I didn’t know how it was going to turn out. In other words, I felt like I could be left speechless, I don’t know, I felt all the fears. I was afraid of not being able to express myself well.

[Lisette]: She was so anxious she could barely down her breakfast. The hearing was at 10 in the morning, so they decided to walk from the hotel to clear their heads a bit. When they arrived, the IACHR took her to the booth and assured her that her testimony would not be recorded. She would be heard, through loudspeakers, only by those who would be present at the hearing that day: her lawyers, Sara Araya, the IACHR commissioners, and those who had been listening to her for some time: the State of Chile. 

As soon as the hearing began, they gave her the floor. At first, she was uncomfortable, scared, but as she spoke, all that fear was turning into anger and also relief.

[Francisca]: It was a . . . like an outlet for me, the fact that there were people from the State in front of me, so I focused on that and looked at them and the only thing I wanted was for them to answer me and give me an explanation of why they had done that to me. 

[Lisette]: Why had she been discriminated against, sterilized, humiliated.

[Francisca]: Please explain to me why this happened, why they did this to me. That was kind of like the only thing I wanted.

[Lisette]: As she told her story, Francisca felt that she was being heard. And that meant a lot to her.

[Francisca]: I felt that they were understanding me and that they were being part of my pain and my anger, because I felt a lot of anger at that moment.

[Lisette]: When Francisca finished speaking, it was her defense’s turn. One of the attorneys from the Center for Reproductive Rights began to ask questions to Rafael Mazín, a doctor specializing in sexual health and HIV, summoned by the IACHR to analyze the case. What you are going to hear is the audio of the hearing . . . 

(SOUNDBITE ARCHIVE)

[Lawyer]: Since we have just heard Francisca’s testimony, where she basically narrated what the facts of her case were, how she had a life project of having a large family…

[Lisette]: They asked Mazín to state all the information that should be given to a pregnant woman with HIV. He said that the medical staff should explain her situation in detail, give her treatment so that the patient would maintain an undetectable viral load, and take care of the issue of transmission to the fetus. And finally, he added one more thing. 

(SOUNDBITE ARCHIVE)

[Rafael Mazín]: And furthermore, that information must have a very, very important purpose, which is to reduce anxiety and eliminate feelings of guilt and shame that people often have when they find out about their serological status.

[Lisette]: He was then asked what prenatal care should be like for a woman with HIV. And he replied that, according to WHO standards, it should be like anyone else’s: the usual treatment, without ever separating her from others, or making her feel isolated or like a danger to others. 

Then the attorney from the Center for Reproductive Rights asked him a key question:

(SOUNDBITE ARCHIVE)

[Lawyer]: When should sterilization be performed, and what should health care providers do to ensure full, free, and prior informed consent?

[Lisette]: Dr. Mazín was visibly shaken.  

(SOUNDBITE ARCHIVE)

[Rafael Mazín]: To protect health? Never ever. Sterilization is not an emergency procedure; it is an elective procedure. 

[Lisette]: And only in a context in which the patient has received all the information necessary to understand it clearly, and well in advance.

(SOUNDBITE ARCHIVE)

[Rafael Mazín]: And providing such extensive information means that the person is perfectly aware, perfectly aware and not under the influence of any pre-anesthetic or anesthetic medication.

[Lisette]: When Francisca’s defense was through questioning the doctor, it was the turn of the Chilean State. But instead of asking him questions, the representative of the Ministry of Health took the opportunity to give some clarifications about health protocols, and to say that she agreed with the doctor’s view regarding the management of patients living with HIV. 

When they finished, Francisca’s defense began to state their allegations and asked the commission to issue a report on the responsibility of the Chilean State in her case. This is Catalina Martínez, regional director of the Center for Reproductive Rights. 

[Catalina Martínez]: As well as measures to ensure that such serious events do not happen again, so that these events, as Francisca said in her testimony… so women in Chile can enter the public health system and be aware and fully confident that they will come out better than when they went in. 

[Lisette]: There remained only the closing statement by the State of Chile. They had listened to everything Francisca, her attorneys and the doctor had to say, but nobody knew how they were going to respond. If they denied them, the case would have to be submitted by the Commission to a final instance, the Inter-American Court of Human Rights, which would analyze the background and issue a binding sentence on the State.  

But Chile’s representatives quickly dismissed that possibility. The person who spoke was the ambassador, Oscar Alcamán Riffo:

(SOUNDBITE ARCHIVE)

[Óscar Alcamán Riffo]: The key word for us is dialogue. We are very interested in reaching solutions. And that is why I would like to raise here Chile’s openness to an amicable settlement.

[Lisette]: He said, on behalf of the State, that they were willing to review all the requirements to reach an agreement, and that they were working to improve the treatment of pregnant women with HIV in the country, as well as attention to sexual and reproductive rights for all Chileans. Dr. Paulina Troncoso, on behalf of the Ministry of Health, also spoke . . .  

(SOUNDBITE ARCHIVE)

[Paulina Troncoso]: Well, I would like to say that for those of us who work in health, this is part of a learning process, about the things we are doing wrong and how we have to do it better. And not only on this issue, but on many other issues . . .  

[Lisette]: This time, no one was questioning the truth of what Francisca was saying, and that alone was a victory. A partial one, of course: they still had to enter a negotiation stage for those words to become fact. Only then could there be an amicable solution. But it was a huge step.

But it was difficult for Francisca to feel this as a victory after what she heard. She had just told her story . . . and she was still hurting so much. All those years she had needed an answer—why her? —but now she knew she wasn’t going to get it. Instead, she was being offered a settlement between the two parties.

[Francisca]: It’s a very strange feeling, I can’t explain it, because it’s a feeling of anguish . . . asking yourself why . . . the explanation . . . and for them it’s like a simple settlement. Not at all what I was feeling.

[Lisette]: When it was all over and she met Sara, she couldn’t help crying. of joy, rage, confusion, pain . . . all at the same time.

[Francisca]: I had many mixed feelings, but at the same time I felt happy because I felt that I was reaching the end of a struggle . . . And at least I was showing up or fighting for what many women couldn’t do. Because a case could expire, because many were afraid . . . because it is difficult to carry on a case when there can be this level of discrimination, such as HIV in Chile.  

[Lisette]: She didn’t know yet that the fight would take years to end. The negotiation process had just begun—and it would not be easy—between the State and the Center for Reproductive Rights, with the presence of the Commission itself. 

Francisca went back to her routine, but she still had a big step to take. There was a conversation that she knew she couldn’t keep avoiding.

She had to tell her son. They had been through so much together—the hospital, the medical checkups, Francisca’s fears, the deterioration of her marriage. They had even traveled to another country, but he didn’t know why. She owed him an explanation of all those things . . . but she didn’t dare.

[Francisca]: I mean, I didn’t want to tell him because I was afraid he would say something like, “Oh no, my mom is sick, she has HIV.” So I sort of had to protect that until he was old enough so he wouldn’t spread it around.

[Lisette]: Finally, in 2018, when her son was 16, she decided it was time to tell him the truth. By then, Sebastián, his father, had passed away. They only had each other, and Francisca wanted him to find out from her, in her words, and not from a rumor or a conversation he wasn’t supposed to hear.

One day, the two of them were home alone and Francisca felt it was time. 

[Francisca]: He was in his room and I said to him, “There is something I have to tell you. I need to talk to you. But if the subject bothers you,” I said, “we can talk about it another time. I don’t know, but let’s talk about it.”

[Lisette]: Her son looked at her for a moment and said yes, let’s talk about it. Then Francisca told him all the things that for so many years she had been terrified of him knowing. And as she spoke, she had no idea how her son would react. Was he going to get upset, was he going to judge her?

[Francisca]: “Oh, I already imagined it,” he told me. “Well, the times I accompanied you to the hospital, the, the medications you take, and all that . . .  I just needed you to confirm it for me.”

[Lisette]: Francisca couldn’t believe it. After searching for the right words, the right moment, the right way to tell him the big secret of her life, and her son already knew it. But she needed something more.

[Francisca]: “OK,” I said. “And what’s your answer to all this?” “Well, nothing,” he said. “Just take care of yourself,” he told me. “It, it’s not something bad.”

[Lisette]: Her son, more than anyone in the world, understood her. 

[Francisca]: He just took it like that, easy, and that was it. 

[Lisette]: And that meant the world to her. 

The negotiations for the friendly settlement stretched out four more years, due—among other things—to the social outbreak that happened in Chile in 2019, and later due to the pandemic. That endless wait, in which Francisca had spent almost two decades, made her feel that her life was on hold. 

[Francisca]: It hurt me because it was like . . . when something bad happens to you, all you want is to try to forget it, but I couldn’t because I had to go back, I had to go back again and again and again. 

[Lisette]: Until, early in August 2021, she received an invitation email to sign the agreement. She traveled to Santiago, and she and Sara walked together to the Foreign Ministry, where State representatives were waiting for her. Carmen and the other people from the Center for Reproductive Rights who accompanied the case were connected virtually. Francisca was nervous, but happy. Finally, everything was over. 

The last time we spoke with her, in March of 2022, some of the points of the agreement were already being fulfilled. The First Lady had apologized on behalf of Chile in a private meeting. Francisca had received part of the compensation, and her son was going to school with support from the State. She told us she felt happy about that, and also about having met so many good people who supported her along the way. Although she still feels a bittersweet taste and maybe she always will. She knows that she will not have any more children, and no one will give her back the 20 years that she had to spend struggling and suffering between two lives.

[Lisette]: What would have to happen for you to feel, at least in part, that the damage the State did to you is being repaired?

[Francisca]: The day I feel there is no longer any discrimination, the day doctors have more information about, about HIV. The day that . . . that they treat us like equal people. That day, I will feel they are repairing all the damage they did to me. 

[Daniel]: Although the Center for Reproductive Rights has not learned of any new cases like Francisca’s in Chile, they will continue to work with the State so that situations like this are not repeated.

This story was produced by Lisette Arévalo and Nicolás Alonso. Lisette is a producer and lives in Quito, Ecuador. Nicolás is an editor and lives in Santiago de Chile. This episode was edited by Camila Segura and me. Sound design and music are by Andrés Azpiri. Désirée Yépez did the fact-checking. 

Francisca’s testimonies were recorded by Chilean actress Bianca Figueroa.

The rest of the Radio Ambulante team includes Paola Alean, Aneris Casassus, Emilia Erbetta, Fernanda Guzmán, Camilo Jiménez Santofimio, Rémy Lozano, Ana Pais, Laura Rojas Aponte, Barbara Sawhill, Elsa Liliana Ulloa, David Trujillo and Luis Fernando Vargas.

Zoila Antonio is our engagement intern. 

Carolina Guerrero is the CEO.

Radio Ambulante is a podcast by Radio Ambulante Estudios, produced and mixed on the Hindenburg PRO program.

Radio Ambulante tells the stories of Latin America. I’m Daniel Alarcón. Thanks for listening.