I Was Diagnosed With Leprosy and Removed from Society

This article originally appeared on VICE Brazil.

Between the 1920s and 1980s, it was common practice in Brazil to forcibly isolate and quarantine people suspected of having Hansen's disease, more commonly known as leprosy. The disease was feared by society and often considered to a divine punishment. The government built hospital colonies called leprosários ("leprosariums") to house the sick; in compulsory isolation, patients were separated from their families, friends, and even their children. The few that were released were often alienated from society, barred by the stigma the disease carries. This attitude caused many patients to continue living in the hospital colonies, even after the end of compulsory isolation in 1986.

Rita de Cássia, 63, is one such patient. Ms. Rita, as she is known at the Hospital Colônia do Curupaiti, was hospitalized in the gigantic complex, which is located in the Jacarepaguá neighborhood in Rio de Janeiro, when she was 20 years old. Having lived there for 43 years, Rita told writer Marie Declercq her story.

I didn't see anything wrong with me and didn't understand why I was "excluded." I asked [the doctor] why, but in response was told that I should go to the health clinic. As soon as I left the room, I overheard her tell the nurse that she should take away anything I'd used, or had come into contact with me, and put it in the incinerator.

I was 20 years old, pregnant, and alone. I was outraged by [the way I was being] treated. I complained to the doctor right away and [threatened to] sue her. She told me this was the way it had to be. As soon as I left the Hospital do Servidor, I wanted to kill myself. I didn't know what was happening to me, but I asked God for the strength to take care of the daughter in my belly. The next day I took a bus to the health clinic, but they didn't tell me what I had either. They just [sent] me to another place. I never imagined it would be where I live today.

When I arrived at the men's ward, I saw a man in a wheelchair in the hallway. His appearance was monstrous. He had no legs, no arms, and a very aggressive haircut—like a mohawk. His face was deformed. His eyes [were locked] on me, and he started to talk to me aggressively.

A girl in a white lab coat asked me what I was doing there. I was crying. I was terrified by this sad world. She took me by the arm and pulled me out of the men's pavilion. I wasn't in the right place after all.

The girl in the lab coat took me to different part of the hospital. A doctor came by and told me I would have to stay in the hospital, that I would not be able to go home. It was all very fast. The doctor spoke to me, and they took me to another ward and let me get in touch with my family. Even then, no one told me my diagnosis. I was still [entirely] in the dark.

Sobbing from the pain, I asked to hold my newborn daughter. They didn't let me. They took her away, and all I was told was that she was born perfect, and that's why they removed her from me. They didn't even explain why. I could only see Giovana's face because the nurse felt sorry for me, and showed me the baby from ten meters away.

That was when I found out I had leprosy.

I calmed down when my mother came to see me. She couldn't stay long because my father was in a psychiatric hospital, and my brother João Carlos was in prison. Besides, she had to care for my siblings. I remember when she left, promising to come back later that week.

[With the exception of] my mother, the nurse was the only one who [kept me informed] about my daughter's situation. She told me Giovana would be referred to Educandário Santa Maria, [a boarding school] in Jacarepaguá. I signed the papers for her to be transferred there, since my mother already had plenty of people to take care of in the family. After signing the documents for her transferral, my mission was to try to get out of the hospital as soon as possible and find her again.

I started treatment right after I had my daughter, and started working in the ward three months after I'd arrived at Curupaiti. There, I helped with something called "packing." I didn't know what it was until I was called into a room one day, where a lady had just died. "Packing" was nothing more than wrapping the dead body in a white sheet. I also saw a lot of people suffering—everything from body wounds, red lumps, unblemished red skin. They screamed in pain. Because of sheer pain, high fever, and poor nutrition, death was common in the ward.

My mother didn't approve of my decision to send my daughter to a boarding school when she came back to see me a week later, but I explained it was my choice. I asked her to visit me along with the rest of the family and [look into] bringing my daughter with her too. I already knew that I was segregated from [the rest of the world] in here. I'd learned that once you entered, you couldn't leave.

[Editor's note: de Cássia's case of leprosy was caught early and treated before before it got worse. The only symptom she ever had was the skin abnormality they found during her original exam. But at the time it didn't matter how bad you had it, you would be kept in compulsory isolation regardless.]

I worked in the ward for close to a year. I learned a lot about how the disease itself functions. I didn't have the appearance I saw daily [in other patients]. I left the ward, worked as a maid, and then went to the laundry room. I learned everything inside the hospital: how to change the dressings of a wound well, how to administer oral medication. I had some difficulty learning how to inject medications, but otherwise the rest came naturally.

The head of the ward was named Elsa Sampaio, and he was very cool. The salary was meager for the sick patients who worked at Curupaiti, and we waited a long time before we actually received [any pay]. We were stuck in there, but it had everything. It had a beautiful movie theatre that drove me a bit mad. I loved movies, and they were good: we forgot about all the pain we were in when we watched movies. I've seen so many that I can't remember their names. I even got a boyfriend named Jesus, and we'd go to the movies together. I'd say I went on more movie dates than ever before. We went two to three times a week.

I began to know the world of Curupaiti outside the sick ward. That same year, I went to live in a different ward called Mangueira, where you shared the room with a few other occupants. I don't remember how long I lived there exactly, because I spent a good amount of time working in that ward too. I made friends with everyone, including people who lived in the nearby village who weren't actually sick. One of these people became a good friend. Her name was Rosana.

It was a city—I mean, it's still a city. But there were things [in the hospital] that I didn't have access to before I lived there. I'd go to church, the movies, carnivale, summer parties, and the theatre. I loved the parties and the birthdays organized by older patients. Everything inside the hospital was similar to the world that exists outside it, but I was calmer here because I didn't need to expose myself. The beginning of my life at Curupaiti and Mangueira was crazy because I had to stay away from my family and my own daughter. But, like anything difficult in life, we have to overcome.

In the years I spent working at Curupaiti, I thought of my daughter every day. When she was four or five years old, I wanted to be able to see her—but not through a glass, like the one time it had happened before. In 1979, I more or less fled Curupaiti. I went to a health clinic and asked to take a vaccine. I used my sister's name, put my picture in the vaccination log to [get the appropriate documentation], and then ran, disguised as a student, to visit my daughter.

With a wig and glasses, I finally got to see Giovana. My dear, dear Giovana. I looked at her and said, It's your mother. We cried a lot. She tells me that she remembers that moment to this very day, but she never told anyone except for her grandmother in order to not get in trouble.

Giovana was the youngest child in the school. Everyone took care of her there, especially one girl named Dona Maria. It was like a second family. We lived like this, me coming to visit her in disguise, overcoming the Curupaiti barrier. When Giovana became too old to continue living in the school, she ended up going to live with my mother for a period of time. We'd meet for ice cream and some candy.

Today, there are about 3,000 to 4,000 people still living in Curupaiti. The hospital has changed a lot over time. As former patients moved to live elsewhere or passed away, others came to live in the hospital; many of them are relatives of the patients themselves. We have a small community here. It's a home that houses many people, [many generations], from sons to grandsons. Eventually my daughter came here to live with me with my grandson after my own mother passed away.

I continued working at Curupaiti. In 1990, I was hired to work as an employee in the hospital, and was promoted to a higher position a year later. At that time, I found out I had cervical cancer. I underwent a painful surgery, which I worried would be made worse by the chronic bronchitis I also had. In the end, I managed to get over it. I retired from the hospital administration shortly thereafter.

Giovana was with a very good man, who is like a son to me. When she told us she was pregnant, it was wonderful. But during a doctor's appointment in the eighth month of her pregnancy, she was told her pregnancy was "high risk," and that she'd have to give birth to Jonathan that same day. I'll never forget the day my grandson was born. I could hold him. I was able to hold him on my lap at last. I wasn't able to hold my own daughter after she was born, but now I'd had the opportunity to do so with my grandson. It was one of the most important moments of my life.

My story is a positive one. Many people who also lived in this hospital didn't have the same happy ending that I do. Today, I have a big house [on the hospital grounds] where I've lived for about 20 years. It's a good house, and so it's good that I have the title to it after several years of living here. When the time came that I could ask the Brazilian government for compensation because of the [compulsory] isolation, my ex-husband Sebastião and I submitted the request. He passed away before the compensation came, but I had the right to receive his share of it in addition to my own. That's how I was able to get the title to my house and have it remodeled. I also was able to help my family.

If my story is of any use, I'd like to talk about the importance of cinema in our lives. The first one in Jacarepaguá is completely abandoned, which is a pity since it was such a great theater. I started a small theater group [in the community] called "Urban Culture," to help kids [stay away] from using drugs and put some culture into their lives.

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