Photograph: Daniel Rocha
For a quarter of a century, in the centre of Portugal there existed a “smiling village” where those with leprosy were forced to live. In this place, flowers covered barbed wire fences and babies were taken away from their mothers as soon as they were born, so they could never be touched.
If you could see these children from the outside, on the days they were taken in that grey round-hooded van, you would see the little girls impeccably dressed in pleated skirts, white blouses with collars and cardigans, frilly socks and shoes with silver buckles and a big bow in their hair. The boys would be neatly presented in shorts, shirts and cardigans, socks and lace-up shoes. Without knowing a thing about these children you could gather, only by looking at them, that this must have been a very special occasion. So it was.
Before the children arrived, all the wooden benches, on both sides, were already occupied by those who were there just to see them. It is as if they were waiting in anticipation for a show, waiting for the opening scene to unfold. The door would open and the very well-dressed children would enter the central rectangle with walls made of transparent glass, as if it was a display, an aquarium of a sort where the children were led periodically, some once a week, others once a month, twice a year, once a year, once in a lifetime. Never.
Inside, the supervisors who brought the children, indicated to the parents, seated on the other side of the glass window as a sort of family audience, who their children were; to the children they pointed out their respective parents. Some parents said they wished to pat them, to kiss them. The supervisors granted them their wishes: they would hold the babies up against the glass so that their fathers and mothers could kiss them. In some cases these tiny visitors would put their little hands onto the glass, so that the parents could touch the same spot on the other side, the closest gesture they had to holding hands.
The parents were able to ask questions of the older ones but they came out muffled, the glass windows had only little holes to let out the sound. It sounded as if they were speaking from afar and not standing right in front of them: “So, are you okay?”, “Have you been behaving yourself?”, “Do they treat you well?”. Classical parent questions. And the very well-behaved children would answer “yes” to all the questions. The parents were comforted by these answers.
At the end of the viewing, some parents would show to the children the goodies they could take back with them, so they would be reminded of their parents when they were out of sight. Two hand-knitted woollen sweaters, one yellow, another one rose, almonds when it was Easter, candies, a black fountain pen. And so ended the visit to these people they were told were their parents.
The infants would then be removed from the glazed rectangle, the door would close and they would all re-enter the grey Peugeot van, to do the opposite route and be returned to the place that was so close, only two kilometres away, but that seemed so distant. It was the place where all the children lived in the middle of the forest.
The smell of parents
Francisco Santos’s first childhood memory is of the place with the glazed walls, he must have been around 4, he is now 49. He remembers being picked up so that his face would be level with the faces of his parents, his mother sat behind a pane of glass to the right, his father behind a pane of glass to the left, the two separated from each other by the visiting parlour in the middle: “I would lean my head against the window for them to kiss me. They kissed the glass, not me. Each of them was crying. They just wanted to touch us. It’s a horrible image”. He recalls feeling the coldness of the glass and of seeing their lips squashed in the spot he placed his cheek. He spent his entire childhood not knowing what parents smelled like, what it felt like to touch them. “We missed out on touching our mothers and fathers, their bodies. My childhood was empty.”
You could say that Fátima Alves, who is now 52, was one of the lucky ones. Her family was one of the ones that asked to see their children more frequently. She felt special for being a part of the Pedrosa Alves family, for receiving attention and all those gifts, but the adults who were pointed to as being her parents were never more than strangers, “glass parents”. It was not possible to build a relationship during these collective visits. It was daunting, with the supervisors listening to all the conversations. It was a childhood made out of “window memories”, as Fátima’s brother, Pedro Alves, 51, calls them.
The description of that place with the glass windows made it sound terrible, nonetheless, this was the place where Maria da Conceição Jesus Silva, “Zota”, as she likes to be called, dreamed of being taken, but never was. Except once, the single visit from which she still retains the image of the woman in a wheelchair she later realised was her mother. “I would so much like to remember her face”.
The only time they talked to Zota about her mother was when she was told to write an annual letter saying she had passed that year in school. Zota would seize the opportunity to add that “she really loved her; she thought a lot about her and that one day she would love to live with her”. She never got an answer. Parents were supposed to be forgotten.
These were the “healthy children” of the leprosy patients at the Rovisco Pais Hospital-Colony, near the village of Tocha (district of Coimbra, in the centre of Portugal), and to remain as such – so read the propaganda – they had to be separated from their parents at the precise moment of birth.
The children were, at the end of the day, fortunate, so they were told when they were old enough to understand, because they would never become like some of the parents they saw through the window, some seriously deformed, without the tip of their noses, their fingers, with sore arms. Leprosy is a disease that mainly attacks the skin and the nerves.
The parlour they were taken into to be seen by their parents was attached to the main door of the hospital-colony, where they were never allowed to enter. The world of disease was set apart from them; it was limited to these short glimpses.
The building with the glass windows had not been there from the beginning. At the start, the national leprosarium was founded in 1947, parents saw the children outdoors, only separated by a hedge of thorn bushes that covered the barbed wire, recalls the oldest patient still living in Rovisco Pais, Abel Ferreira, 88, who was admitted when he was a teenager.
The hedge was not enough, says Ana Maria Silva, a social worker who joined the staff in 1948 and is now 88. “The parents could not help kissing their children through the fence. They wanted to grab them, to kiss them. This had to be avoided”. So, the building was built, there was a need for it. “And, you know, the people who were passing by on the road could see everything, all the children on the street, the toddlers. It was not a pretty sight”, she adds.
Hence, with the construction of that building, everything could happen in a more discreet manner, away from the eyes of those passers-by who might not properly understand “the good faith” that was behind the building. This “good faith” was that the parents and their offspring could see one another without the risk of contagion, pursuing what was one the concerns of the creator of the institution, the doctor Bissaya Barreto: “May the misfortune of the parents carry no weight on the lives of these children”, quotes the book National Leprosarium-Modernity and Ruin at the Hospital-Colony Rovisco Pais (Leprosaria Nacional-Modernidade e Ruína no Hospital-Colónia Rovisco Pais).
There was no interest in explaining to the little ones what they had witnessed in the visiting room. “We didn’t understand what the hell was going on, people crying. I was afraid to go there, if it was up to me I would never have gone there”, says Francisco Santos.
Photograph: Daniel Rocha
What is that, lepers?
“The first time I heard about leprosy I was 5, I thought it was a toy”, remembers Zota, 60. Until the day came when someone told them they were the “children of the lepers”. “What is that, lepers?”, she remembers asking a supervisor one day. “She turned her back on me. They wouldn’t say a thing.” No one ever explained to her that the place where they lived when they turned 4 was the preventorium, so called because it was meant to “prevent” the spread of the disease to the children.
Those visitations were meant to please the parents, they were not aimed at the children, who just played the role of well-behaved infants. They were meant to reassure the adults and convince them that their children were better off, very well treated.
“They accepted the separation very well. They understood, they knew it was the best for their children”, recalls Ana Maria Silva, who delivered the first baby who was placed in the nursery a year after it opened in 1948. The baby subsequently became her godson.
The baby was born in the delivery room and was separated from the mother without a single maternal touch. The parents had previously been informed that the infant would be taken to a place set apart, two buildings separated from the hospital: the nursery, where the baby would remain until it was 3, with a later move to the preventorium, supposedly from the age of 3 until they were 10, but some would stay until they were older. The place for the children was designed to be a corner of purity, a paradise away from the disease, the “healthy area”, where they lived surrounded by greenery.
It was said there was a scientific justification for such a radical divide. Compulsory confinement for leperosy patients, and separation from their offspring, was established at the 2nd World Leprosy Conference, in 1909, states Alice Cruz, anthropologist at the Social Study Center of Coimbra University, who did her Masters and Phd thesis on Rovisco Pais and leprosy. What was known at the time was that the Norwegian doctor Gerhard Hansen, who had discovered the disease’s bacillus in 1973 (Mycobacterium leprae), had decided to isolate the patients in a leprosarium, so managing to reduce the incidence of the disease in Norway. It was not clear at the time whether this reduction was due to the isolation of the patients or the improvement of their life conditions, but it was his idea, at the conference, to make patient isolation compulsory, hence, the consequent separation of children from their parents.
All over the world, this model was replicated, with variations. In some cases leprosariums were, in themselves islands, so that the isolation was absolute, like Kalaupapa in Hawai, that only stopped isolation in 1969, or Spinalonga, in Crete (Greece), which was closed in 1957. Some leprosariums even had their own money (coins), so much was the fear that money itself could be the transmitter. The belief, at the time, was that leprosy was transmitted by physical contact.
At Rovisco Pais, the visiting days were special for another reason. “The first time I put on shoes was to go and see my parents”, remembers Conceição Marques Fernandes. “We would put the shoes on only to have them removed”. Out of their parents’ sight, away from the transparent compartment, they would return to the preventorium, where the pretty warm clothes would be stripped off to be replaced by their day-to-day garments, “A smock and open sandals, whether it was winter or summer. I was always very cold.”
As for the presents they had received from their parents, “as soon as the door had closed, bye, bye”, remembers Fátima, who never forgot the black fountain pen that Uncle Ilídio brought for her and that was retained by one of the supervisors. This episode epitomises how powerless the people on either side of the glass were, because a higher power was in place, that of the doctors and staff.
Photograph: Daniel Rocha
In her current house, in Coimbra, there is one object Fátima likes to show as a symbol of her make-believe childhood. It is a clown. She had asked for one in the letter she wrote to baby Jesus, and there he was. “I had him in my hands, against my chest”, but during the Christmas party there was a child that asked to have it and so the toy was taken away from Fátima to be given “to the doctor’s son”. The clown sitting at the house, sad faced, square tie matching the lining of the jacket and trousers suit, and big yellow shoes, was given to her as an adult by a friend she once told this Christmas story. “I hate Christmas. Christmas is for people with money.”
The rosy cheek on the front cover
For about 20 years of its 30 year history, the hospital had its own publication, Rovisco Pais-Portuguese Magazine for Hansen Disease [the modern term for leprosy]. In a 1967 edition the front cover shows two photogenic babies inside two overly ruffled swinging cribs, blue for the boys, pink for the girls. Another cover presents a cheerful little girl wearing a pink smock, another one shows a classroom with a girl dressed in a yellow dress doing sums on a slate blackboard, another one portrays boys playing football in a field. Children were often chosen as subjects to illustrate front covers, rosy cheeked and healthy in appearance. They were supposed to be the evidence of the kindness of the institution towards patients, showing the affectionate manner in which they assisted “their little children”.
Articles in newspapers at the time wrote about the “endearing” environment where the little ones grew up. “It’s described as endearing?”, asks Francisco dos Santos. Yes it is. In an article of Diário do Minho, 1949, the “beautiful christening” of two of these children is described. The article explains how, “to prevent contamination, the little ones are, immediately after birth, looked after in a special way and put in a daycare centre where childcare assistants play the role of a second mother.”
It’s true that their cribs were just as ruffled as the ones in the photo, so pretty. It was in them they rocked the babies to sleep. Francisco Santos was told by his mother, when he was already an adult, that the institution was so short on staff that the overseer had to tie a string to each one of the cradles to rock them collectively to sleep.
If you are around Francisco Santos long enough you can tell he is constantly oscillating his weight from one foot to the other, like a boat. He is convinced that this self-rocking movement that he can’t help doing is a product of his time spent in the institution. He has seen it in other “brothers”, the name he gives to others who have lived at Rovisco Pais’ nursery and preventorium.
Photograph: Daniel Rocha
But Francisco Santos was, according to Abel Ferreira, one of the oldest leper patients still living in the hospital, “one of the lucky ones. ‘You did okay because you left early. You are a whole man”. He believes the institution saw the patients children, like little calves that you remove at birth”. “A child is not a machine, it needs affection. They were well-fed, but the main thing was missing – a mother’s lap, a father, a family. They are psychologically scarred. All the children have problems.”
Abel Ferreira insists on how fortunate Francisco was because when he was 4 he was given to a nurse, a friend of his mother, who raised him outside the hospital. One of Francisco’s sisters was less fortunate. “She was given to a family of farmers. They turned her into the slave of the house.” When Francisco met his sister she was 8 years old, very thin, “her skin sore with little holes” and his “godmother” nurse accepted her as well. At the time, there was no adoption law and the children’s files only mention “delivery terms”. “A blue sheet of paper and the child was adopted forever. There was no social security. We were raised like battery chickens. There were no rules”, Francisco, who made a living as a goldsmith, comments.
Madalena Rico, a social worker, 69, who is viewed by the patients and children as “a mother” says that at least when she entered the institution (in 1969) things were not as Francisco tells it. The hospital social workers visited the children to see how they were doing. They would first be placed with relatives of the patients, and if this was not possible would they try placing them with “foster families”, but parents had to give their permission.
The main childhood memories of Conceição Marques Fernandes, 57, are from the preventorium in her double capacity of being a child and a child that had to take care of other children. “When I was 11 years old I had to cook for 65 children”. She remembers very clearly how she had to learn to handle those gigantic pans filled with milk. Her list of chores included polishing the terracotta tiled floor on her knees, ironing, waiting on doctors and interns whenever they had meetings. The only task she enjoyed was taking care of the babies and when she remembers these moments it sounds as if she is talking about dolls: “I would feed the little ones with the bottle, clothe them, feed them porridge, change their little nappies. Each dormitory had 50 cots.”
Fátima recounts the same experience in a less tender tone: “When I was only 10 I was responsible for 20 children. It they wet their beds or diapers I was beaten because I didn’t take them to the potty.” In the preventorium it was one of many “misconducts” attached to some sort of punishment.
It was so confusing to figure out what was an infraction from what was not, that when Conceição Marques Fernandes got her menstruation she thought that it was going to get her punished, as was the case when one wet the bed, so she hid it as long as she could. The list of punishable actions was unpredictable: singing the multiplication table (even if it was correct) instead of saying it, being a girl and playing football with the boys, biting your nails. Examples of punitive measures included: tape on the mouth, kneeling on the floor with your hands under your knees, drinking only water and eating bread for two days, “one night in the ‘cubicle’, where garbage was kept and there were mice”, “sleeping naked under the bed”. When the infringement was peeing on the bed what was bound to happen would be very specific: they were pulled out of bed to be plunged in a cold water tub, and then they had to run several laps around the building carrying the dirty mattresses on their back.
“What life is today and what it was in the old days”, muses Conceição Marques Fernandes, as if history was enough to justify all the work overload and endless punishment of her childhood. Fátima, the only one who managed to complete high school, has a less gentle version of those days. “What we endured has a name”, she says angrily: “it’s called child exploitation, child abuse, child labour”. Every time she hears someone saying that a child needs to be punished to be well-raised, the images of her childhood come to mind.
But this is Fátima talking, because if you ask her younger brother, Pedro Alves, who had the same childhood, he looks at it very differently. He smiles when he listens to Fátima, outraged, even today, singing mechanically the hymn they all had to know by heart, every time “important people” came to visit: “Hospital Rovisco Pais/ You’re like a tender mother/ Always with your arms open/ Assisting the poor patients/ Oh Preventorium, Oh our sweet home/ You were built for our good/ Surrounding it there is a beautiful garden/ With rosebuds/ Let us sing along.”
The brother listens to the verses she utters in such anger, the feeling that explains why she hasn’t forgotten a word of the lyrics, unlike him, who tells us that he chose to erase it from his memory. He says to Fátima, placidly, “it was like that in those days in every boarding school, Fátima, it was the system.”
Ana Maria Silva, who did not work at the preventorium, is not aware of the child abuse that the children mention, although she thinks they might be referring to “that old time foolishness”, a time when children where raised with strategies that involved “the dark room” and scaring them with the “boogie man”. But, if you think about it, “there had to be order. They surely were up to no good, a preventorium full of children, more than full.”
The building where the children were shown to their parents is presently a chaotic warehouse where objects of that era are stored. One of them is a framed photograph of the Portuguese dictator Oliveira Salazar as a young man and a picture of the “miracle” of Our Lady of Fátima with the three little shepherds kneeling before her. On paper, the leprosarium ended in 1996. It’s the year when it was turned into what it is now, the Rehabilitation Medicine Centre of the Centre Region-Rovisco Pais. Its current users are polytrauma patients, some with neurological injuries, amputations, but some of the old buildings still stand, many of them completely abandoned.
“An environment of wonder”
Here, next to the entrance of the hospital a different world started, it was where the “diseased parents of the healthy children lived.”
The doctor Bissaya Barreto describes the long promenade that started in the visiting parlour as “wide, open, cosy, giving a smiling invitation to those who were supposed to enter. Surrounding it there is only a bush where flowers abound.”
Strolling down the path that starts in the gatehouse means going down a long avenue. “It was beautiful, all in pink and white, full of oleanders. Professor Bissaya Barreto loved oleanders”, recalls Ana Maria Silva. The purpose of the place was to have “a smiling village” from where no one would want to leave. “Our desire is that patients run to the leprosarium and not run from it”, wrote Bissaya Barreto. After all, what other place in the Portugal of those days would provide its inhabitants the chance to have an open air cinema? A private lagoon? A private forest? Inside there was also a chapel, a football team. In this miniature world they also had “a little prison”, recalls one of the children, Francisco Santos.
It was “an environment of wonder”, “gifted with horizons” and “natural charms”, said the doctor, quoted in the same book. The intention was that life in that enormous 144 hectare compound (the size of 144 football fields) would be of “relative freedom”, meaning that one wanted to remove the “jail appearance”, so the barbed wired was concealed with graceful greenery.
Even if the purpose was to make the place as agreeable as possible the system in place was, in any case, of compulsory confinement. The so-called “mobile brigades” covered the country searching for ill people in their houses, with arrest warrants and accompanied by the police. People reported on leprosy patients. Francisco’s father always told him that he didn’t have time to say goodbye to his family, that they broke down the house doors. There were separated couples, children that came with the parents and others that stayed behind, families torn apart in the middle of the night. “It was pandemonium in the beginning”, recalls Abel Ferreira.
Ana Maria Silva remembers the arrival of the first patients. “How can I forget. They arrived at night, in special trains, wrapped in blankets, they were from a place called Alcains. I wept when I saw the first woman, who had left her house, husband, children. They were brought in at night to avoid farewells, so as not to be seen, and some because they did not want to come.” “In came people with no noses, no eyes, no teeth, no mouths, fingers falling off. It’s indescribable.” It was a time when there were villages that had entire families affected by the disease who barricaded themselves in their houses, Ana Maria Silva says. Among the patients there also children who were infected and, for her, that vision made the need to separate babies from infected mother even more compelling.
The institution was not able to capture all the patients. Madalena Rico remembers anecdotally that there was one man, from Albergaria, “who climbed up a pine tree like a cat. They were never able to capture him”. In the patient file archive two drawers are dedicated to the “patients on the run” or “on irregular leave”.
Alice Cruz, social researcher at the Social Studies Centre at University of Coimbra, says there was no “active and frontal resistance” from the patients against the system, but that resistance was translated into “small actions that subverted the model”. One of them was when patients escaped to get married outside and then came back (inside, relations between the sexes were officially forbidden). Francisco’s father, for example, was not resigned to seeing his children with a glass window in between so he sneaked out of the enclosure through the forest and lurked there, watching his children from afar. Alice Cruz calls these actions evidences of the “beautiful art of survival”.
Up the Rovisco Pais promenade a cluster of small traditional houses arises. Dividing the precinct there used to be an invisible line that separated this world into two sexes, explains the book Leprosaria Nacional. The hospital-colony was conceived so as to create a sterile world. Even the chapel had separated naves so that, not even in mass, men and women could be together. The place was, in theory, devised to contain and lead to the extinction of the disease, deterring patients from reproducing. But this type of contraceptive measure never sufficed.
To some of the people that were born here the parents told them they were conceived in the pine forest within the colony, in hiding. For impregnating his mother Francisco’s father was in the leprosarium jail for 23 days, which was a punishment for the fact that they were both single. It continued to happen. After a year and a half, his mother was pregnant again and they had to let them marry. They wound up having five children inside the hospital and as a result they ended up granting them one of the little yellow houses that only married couples were entitled to.
They surrounded themselves with pets. For Francisco this was a way they found to fill the void left by the absence of all their children from whom they were forced to be separated and whose childhoods they did not witness, aside from small episodes that filtered through to them. When Francisco was grown up his mother retold him the two incidents of childhood mischief she had heard about and that she repeated. Once was when little Francisco was caught next to a sugar bowl he had devoured by himself, the other time was when a doctor with a beard visited the nursery and Francisco suggested his face was dirty and needed to be cleaned.
Photograph: Daniel Rocha
No one can account with certainty how many children and teenagers were born there and lived apart from their diseased parents, who had reached a total of 1200. It is an established fact that the nursery was built to house 50 babies, the preventorium was meant to have 120 children up to 10 years old, but they ended up staying longer. In a list kept in the hospital’s archives only 78 babies were registered in the nursery in the year of 1960, while in the following year 90 children entered the preventorium.
Lucília Vaz Marques was infected with leprosy as a child. She entered the hospital-colony at 9, in 1951, and she left at 35, in 1977. She met her husband in the leper colony and she consented when they removed both her children from her in the delivery room, “it was the law”. She remembers distinctly the first time she saw her son outside the delivery room, he was a month old. She had dressed herself as if she was “going to a party. The dress was brown with yellow roses, almost new. I didn’t have much to wear, it was mostly what the female doctors and the nurses didn’t want”. The baby was so lovely, “all dressed in white”. She went to see him once a month. As she watched him grow up through the window he also answered “yes” when she asked “do they treat you well?”.
“Zé never told me a thing, the poor thing, he was afraid.” Until one day a patient started saying that he managed to see his son and he told him that they hit him. When she heard this, Lucília did what little she could. She talked to the priest who was her son’s godfather and asked him to remove the child from Rovisco Pais, he was 4, to a Catholic institution outside, a Casa do Gaiato. When she could finally leave the hospital and had the means to take him with her, when he was 8, he told her he preferred to stay because there he could at least continue to study.
Although there was another song they had to sing that reassured them that everything was possible – “Today we are young/ Tomorrow we will be adults/ If we study well/ In a couple of years we will be graduates” the girls were only taught to do embroidery and to cook, the boys learned carpentry. Fátima so wanted to study but she kept being interrupted to do domestic chores and, because she was a tomboy she was often told “you will be nobody”. Who she has became as a adult has a lot to do with being the opposite of what she lived at Rovisco Pais. “The tomboy that was going to be nobody” played football at União de Coimbra football team, never wore a skirt again her entire life, finished high school, has her own house and car and works in the restaurant business, Fátima recites proudly.
In the 1970’s the hospital got a minibus for the children of the patients to study outside the institution, at Figueira da Foz high school, recalls Madalena Rico. But she only remembers one boy that reached university “He became a priest” and has dedicated his life to helping abandoned children in Mozambique.
On paper the leper colony was only disbanded in 1996 but long before that its gates opened to those who tested negative to the disease, people that left the hospital cured, says Madalena Rico. Then along came the 1974 revolution that put an end to the 48 year Portuguese dictatorship. Fátima remembers that day saying they made their own little revolution going up to the roof top and writing in posters ‘Stop PIDE [Portuguese political police]. Down with the assistants”. But it didn’t end that day. They applied disciplinary measures to the protesters, the boys got their heads shaved, the girls had their hair cut like boys. Nonetheless, it was the beginning of the end of the preventorium. Fátima left in 1975, her brother in 1976.
Conceição Marques Fernandes remembers how in “her mistress’s house there was no work time-limit, so she fell asleep on the little kitchen bench waiting not to be needed for the day. Fátima will never forget the attempted rape by one of her bosses, a college professor, she was 14. For Zota working in a family home meant seeing for her own eyes what people called a family. “The family was beautiful! There was the husband, the wife, the three children.
Beautiful, beautiful”. It was all so beautiful she couldn’t handle how perfect those lives seemed. Her boss was aware that she was unwell when all the plates she tried to place on the table fell on the floor. “I took a handful of pills and swallowed them.” She was 21 when she tried to commit suicide.
Their existences were so bad inside that they imagined that, once they could leave, when they would finally be reunited with their “glass parents”, their lives would be wonderful, that they would finally find happiness with their true family. Things did not happen that way.
Social worker Ana Maria Silva has her own explanation: “Inside they were treated as rich infants. “Every opportunity was given to them, school, catechism, they did their first communion, high school.” As for the material part, “they had access to everything. Meat and fish of fine quality, bread there was very good, it was extraordinary bread”. After having “everything” they had trouble adjusting to the world, to the poverty of their family houses. But the problems adapting to family life had more to it. And Ana Maria Silva tells the story of twins that were admitted to the nursery at five months old and left as teenagers to rejoin the mother. It’s true that the house was poor, very poor, the interior room divisions were made out of fabric, but the “children she raised herself loved her so. The twins returned older and never adjusted. “Seeing your children is one thing, living together is another, it’s very different”.
Many of them lived disturbed by the constant tension that lay in the knowledge that their biological family was taken away from them and, at the same time, having the notion that their families of origin were poor and dysfunctional, or became dysfunctional by the segregation and separation from their children, and had very little to give them.
“I thought that once I left that world of suffering everything was going to be different, that my mother was a sweet woman who was going to smile at me all the time. We were never cared for. It was an illusion. I would never have been happy outside, if I had stayed at home with my mother”, Conceição Marques Fernandes, 57, admits. Her mother was an alcoholic and at home there was no food and no toilet.
At the preventorium she always had turbulent sleep, she hit her head against the bed bars up to the point she injured herself. This situation continued when she became an adult but her husband found that it was enough to stroke her with his hand to calm her down. “That’s what she was missing, tenderness”, he says. Retired for psychiatric reasons since she turned 43, Conceição is a devoted housewife who waits on her husband willingly.
Fátima never got to kiss her father. She found out he had died when she reached 18, five years after she left the institution; she reencountered her mother when she was already 20. Her life project became to reunite the original family. “It was an illusion.” The bond with her biological mother was broken and no matter how much she wanted to mend it she couldn’t. It’s not possible to adopt a child as an adult, the tie is artificial. Her mother, who is still alive, only raised one child, the one Fátima calls “her true child”. Her younger brother was born outside, her mother breastfed him, watched his first steps, she was able to touch him.
Throughout the years, patients left the hospital as they were considered to be cured, as happened to Fátima’s mother, but no one cared enough to glue back together all the pieces that had been separated. “I don’t think the State provided for my wellbeing, I feel the State owes me something, it stole my childhood.”
Francisco only started to get to know his parents when he was already a teenager. He remembers visiting them in the little house in the leper colony where they lived all their lives and going to the movies with his father in the institution’s open air cinema. His father died when he was 17 after being run over by a car in the road that led from the institution to the nearest town. He slowly became aware that he had siblings, that each one was sent to a different place in the country and that they had all been in the nursery and preventorium at the same time, but no one bothered “to introduce” them. “Nobody told me I had any brothers and sisters there.”
Zota never knew who her mother was, other than the name on her birth certificate, Estela Silva. She envisaged that all her problems would vanish when, one day, someone would address her as “mother”, as she saw so many people doing on the streets. She says she was not picky, her first husband was 35 years older than she was, she didn’t care particularly for him, but she he is grateful to the man. When her daughter was born she couldn’t leave her alone in her crib, the baby slept with her on the bed, she weighted 2.96 kg. “My little Sónia. She was beautiful, blue-eyed. She didn’t look like any of us, very precocious”, she starting mumbling that one syllable when she was only 11 months, “Mom-Mom”. It was enough. “That ‘mom-mom’ made me cry every time”. My little Sónia, my Vasco, my José. It’s as if the possessive pronoun is part of the names of her children.
Francisco Santos remembers how he panicked when he realised he was going to be a father. “How can you love a child if you were never loved? I had to search for love.” He talks about his inability to say “no”, the “no” every parent has to be able to say. “I say ‘no’ but then I go around and say yes.” He lives with the constant dilemma of having to deny what he never had and wanting to give in excess. The few times he slapped one of his children he had to go elsewhere to hide his tears. “There is a constant struggle going on inside my head: if I didn’t have a father or a mother why should I discipline my children? Every attitude I have as a father stems from what my childhood was.” “I’m sure that anyone that was born in that place can relate to what I’m saying.”
Their lives are the result of this history, of the history of leprosy in the world, of the history of leprosy in Portugal. None of them questions the explanation for the fact that they had to live separated from their parents, to prevent contamination. They question the way it was put into practice, not the reason it was done.
They are not aware that in the decade when Rovisco Pais opened sulfone already existed, the antibiotics that meant that leprosy could be cured. Fátima, Pedro, Maria da Conceição e Conceição were all born after that. “In Portugal you have the paradox of having the inauguration of the national leprosarium in 1947, at a time when it was beginning to be clear that compulsory confinement was useless”, says Alice Cruz, adding that, at that period, people could already be treated in the community. “In 1940’s Portugal, when a treatment that provided the cure for this disease already existed, a megaproject to segregate opened its doors. It was all about politics, it was never about science”. This is also explained by the existence of “a political regime that treated poor people in the Portuguese population in a patronising fashion.”
“And you cannot say this was due to ignorance. They chose to maintain compulsory confinement. The medical director, Manuel Santos Silva, went to international conferences, he adopted the medication”, the scholar adds. Internationally speaking, the turning point was in 1953, with the 5th International Leprosy Congress, in Madrid, where “compulsory confinement and parent/child separation were abandoned”, she explains. “These were people that were deprived of civic and political rights with no scientific evidence.”
The recommendation was followed differently and there are different experiences in each country. In Norway the national leprosarium, Saint George, in Bergen, only kept in-patients until 1946; in Spain the leper colony of Fontilles, which opened in 1927, started treating leprosy patients outside the hospital in 1964.
What we now know about “the most hideous of all the evils”, as Bissaya Barreto called it, is that it is, in the infecto-contagious diseases group, one of the least contagious. Although touch was seen as the primary source of contamination it is in fact residual. Leprosy is mostly spread by respiratory transmission, like common influenza, by sneezing and coughing. Also, more than 95% of people are naturally immune to leprosy. Nonetheless, leprosy continues to carry “a weight that was never its to carry”. “The Western vision of leprosy is inseparable from the idea of divine punishment, which comes from the Bible, that erroneously gives the label of leprosy to a vast array of dermatologic diseases”, explains the social researcher. “It became the disease of impurity, of filthiness.”
“Diseases are never just diseases, they are categories that allow us to organise society and where we choose to put people”. And you have “diseases so symbolically overloaded”, as essayist Susan Sontag phrases it, that “they become adjectives”, adds Alice Cruz. In the dictionary “leprous” continues to mean “disgusting”, “contaminated”, “corrupted”.
The Brazilian example
The date when the last baby was separated from his parents at Rovisco Pais is unkown. In Brazil the dates are well defined: there was separation from the 1940s until the 1980s”, says Artur Custódio, national coordinator of the Movement for the Reintegration of People affected by Hansen’s Disease [Leprosy’s modern designation]. In Brazil, 12,000 children with stories very similar to these Portuguese ones were identified. “Questionable adoptions took place, people grew up totally oblivious of their past and their parents.” Artur Custódio calls what was done to these patients and their children “State crimes and human rights violation”. The Brazilian government acknowledged this fact in 2007 by granting a lifelong pension to the people forced into compulsory confinement for having leprosy, a measure that had been put into place, for the first time in 2001 in Japan. The rationale for these decisions lies in the fact that confinement continued to be practiced even when there was no longer scientific evidence to support it.
“Now it’s the children’s turn, they are organising demonstrations all over the country.” The goal is that the Brazilian government also pays them an indemnity this year. But “just the fact that we are having this discussion is changing lives. By telling their story, their self-esteem is rising, some are writing books”. In her book “Born After”, Brazilian Teresa Oliveira mentions people like her, “orphans of alive parents”. The country continues to have high incidence of the disease, there were around 100 leprosariums working, many of them are being transformed into museums, as a result of a global movement against the eradication of these memories , explains the Brazilian coordinator.
The Rovisco Pais administration informs us that there is the intention to create a museological space inside the compound. But it rains inside the building where these children spent their childhood seeing their “glass parents”, the water falls directly onto the rusty archives where the files of the patients and their children are kept. The rust prevents many of the drawers from opening and mould is eating away at words and dates.
In the town of Tocha, about two kilometres from Rovisco Pais, little is known about the old leprosarium, the existence of these children is unknown. Without realising it, those who live so close to the former hospital for the treatment of leprosy continue to perpetuate the main ideas spread by the dictatorship’s propaganda: that it “was beautiful inside, that the gardens were lovely and it was the best hospital to cure the skin disease that was extinguished thanks to its existence”. The common belief is that “there are no such people anymore.”
Júlia Silva, Portuguese, 37, a cleaning lady from Guimarães (in the North) was diagnosed with Hansen’s Disease 15 years ago, she still has a hard time moving one of her arms. From 2009 to 2012 there were only 33 cases recorded in Portugal. Júlia is supported by the Portuguese Association of the Friends of Raoul Follereau, that organises an annual get together at Rovisco Pais with the old and new leprosy patients. She usually comes with her two daughters, and does the traditional visit to the “Hansen Disease patients” that have lived there for 50 to 60 years. She asks no questions. By doing so, Júlia is protecting herself, trying not to imagine what it would be like to have that same disease 60 years ago, up to the point of being disfigured, of being arrested, of being separated from one’s children.
She had Ana Rita 8 years ago, after being diagnosed with Hansen’s disease. She describes the day her daughter was born as “beautiful”. The delivery was so fast that she didn’t even need an epidural and she breast-fed until she had no more milk. That’s why she doesn’t want to know anything about that past. “I don’t want know how it was before, that way I won’t start wondering how it could have been.”