On July 12, 1971, Siete Días Ilustrados magazine published a photo of a scantily clad woman on its cover and five titles. One said: “Discoveries. Macondo is in La Rioja”. Already within its pages, in its index, the publication told a little more about what it promised on the cover: they talked about Aicuna, a rural town in that province in which, the magazine said, “almost all the inhabitants are part of the same family (the Ormeños).” Siete Días also claimed that The town was plagued by a phenomenon that the magazine did not hesitate to define as “its curse.”: “Because of the high level of consanguinity, the town is characterized by high proportion of albinos, a thousand times higher than in the rest of the world”.
The effect was immediate: Aicuña, who It was never inhabited by more than 350 peoplewas visited by curious people from close up, from not so close and from far away who wanted to see and above all photograph what Siete Días magazine had told them, which also wrongly suggested the existence of relationships that bordered on the incest.
The reaction was also immediate: the residents felt the invasion and the gaze of those who sought every trace of strangeness they could find in its only street, which winds and steepens from 1,500 to 1,800 meters above sea level. The albino residents – of which there were and still are – felt the invasion more strongly: all eyes were pointed at them and the magazine had described them as a “curse.”
In the nearby towns and cities, the conviction began to grow, informally but powerfully, that Aicuña was “the town of albinos” and that that, in itself, was a potential tourist attraction of the place. It was even promoted that way in some official publications.
The statistics supported and still support the superiority of Aicuña with respect to the world in terms of the presence of albinos. According to estimates by Johns Hopkins University in the United States, In the world, one in every 17,000 births has this condition. In Aicuña, the average rate throughout the 20th century was one in every ninety births. It’s an abysmal difference.
In the town, between the end of the 19th century and the present, forty-six people with albinism were born. Currently and as confirmed to Infobae authorities of the Department of General Felipe Varela, on which Aicuña depends, out of a total population of 220 people, three are albino. This is one person in every 73 who live in the town.
“It is true: in previous times this greater proportion was talked about as a tourist attraction. But We no longer point to that to talk about Aicuña. We see it badlynaturally it was something that made many people in the town feel very bad, albinos or not,” he tells Infobae Hugo Páez, mayor of General Felipe Varela, the Rioja department in which Aicuña is located.
“To talk about Aicuña and its tourist attractions, we can talk about its beauty, the microclimate that exists despite the aridity that surrounds it, its proximity to the Talampaya National Parkof its production of walnuts of great quality,” adds the official, and adds: “Over the years, the rate of albino population in the total population has been maintained, which is effectively much higher than in the rest of the world.” In recent decades, the population of Aicuña decreased: many residents left for larger towns or cities -especially to Chilecito, a two-hour drive away- to access better job opportunities.
“There was a lot of talk at the time about ‘the people of albinos’ but very little about albinismabout how to try to help our children if they are born albinos, as is my case,” Delia Oliva tells Infobae. She was born in Aicuña, she is the mother of Agustín, who is 14 years old, and they now live in Chilecito, from where together they promote Albi La Rioja, an organization to raise awareness about this condition, and that will carry out activities this Thursday, International Albinism Awareness Day.
“There is a look at the albino that can be very difficult to bear, very frustrating, and I think that arose when Aicuña began to be spread as that ‘phenomenon’. It is the look that appears when someone suddenly sees that an albino person is with more clothes than other people, more covered up, even in a pool you can have pants, a shirt and even socks. Then a look appears that seems curious but goes further: it is like an inspection,” explains Delia.
Agustín, his son, has the most common albinism in all of Aicuña: oculo-cutaneous. “At the moment of conception, due to the genetic combination between mother and father, that baby does not develop melanin. So has no pigmentation in the skin, eyes, hair“, describes Delia, who learned much more about the subject after the birth of her son in 2010.
“They have limitations, they always have to have skin and eyes well protected from the sun, but the family has to do the work so that they do not feel that everything related to their care is a burden, that they have to pay attention to sunscreen every three or four hours. That gaze that inspects them does everything to make them feel bad and to keep in mind what distinguishes them from others,” Delia continues.
Dismantle that view and also fight for, for example, a law that contemplates photoprotection as a medical treatment and not as a cosmetic product -and, therefore, that there is some coverage by the health system- is part of what Delia and Agustín promote in Albi La Rioja. On this special day, declared by the UN a decade ago, and also daily.
“People still come with the curiosity to see ‘the town of albinos’. And they find a beautiful town, a mountain oasis, with warm people. They are surprised that We are much more than what they defined us with several decades ago.. It is true: here there are, proportionally, more albinos than elsewhere. But that is not what defines Aicuña, our town,” says Nélida Oliva de Ormeño.
She is the protagonist of “Lo de Nelly”, the place where she sells artisanal wines from the region and, above all, products made with the Aicuña nut: caramelada, walnut chocolates and walnut flour alfajores. Her husband and her seven children carry the same surname as 70% of the inhabitants from this corner of Rioja that is reached after driving five and a half hours from the provincial capital, on asphalt and then on land.
“It was said a lot that relatives married very close relatives here. And that is why there are many people with the same last name and also many albino people. But that’s not how they told it,” says Nelly just after giving her married name, the one that is repeated along the entire 23 de Julio Street, surrounded by cacti and hills.
In this town, founded as Aicuña just over three hundred and fifty years ago, almost all the houses have a clay oven and almost everything is done on foot, although the little ones prefer to come and go by donkey. In addition to walnut trees, there are quince, peach and apricot crops. It is reached after detouring about eight kilometers along a dirt road from the Miranda Hillan area of Route 40 that was paved just nine years ago. From Buenos Aires to the capital of Rioja, by plane, it takes two hours. From that city to Aicuña the delay is between five and six hours.
They are lands that have history. A history crossed by blood, disputes over inheritance and also genetics. In colonial times, Spanish Pedro Nicolás de Brizuela He bought the ranch of Aicuña – which includes not only the town but other smaller places around it – in order to leave an inheritance to one of his out-of-wedlock children.
That son had no right to the inheritance, but the Spanish general decided that these lands would be his way of ensuring his future. A future that the legitimate children he had had under the wing of marriage could not claim.
In his testimony he explained it well: “So that this poor person, because he is poor, can enjoy a piece of land with which he can sustain himself, and if any [otro] my son tried to take it away, incur my curse as one who goes against the will of God and his father.” But he was not enough with his promise to curse: several of his legitimate children – there were eight in total – tried to appropriate those lands. And the children of those children, and the grandchildren, too.
Attempts at usurpation lasted for centuries: The last one was in 1955. Generations passed and the need to resist these attempts was inherited. The geographical isolation of the town, which until not too long ago was even more pronounced, was combined with the instinct to maintain a presence in the land to defend it. And the result of that was a population that, for centuries, did not move from where it was: it was in that context that Families began to grow and, perhaps, cousins of cousins, after several decades, formed new families with each other..
The illegitimate son who inherited the land was not albino. But two of his brothers – those who had the right to inherit – did, as documented. That is enough to confirm that the father of all, The Spanish general carried the gene for albinism in his genetic makeup., and that then the first lieutenant of Aicuña also had it in his DNA. From then on, that gene expanded as that original family grew branches.
In such a small population, so isolated due to its geography and the threats it suffered throughout its history, this gene occurred – and continues to occur – with a much higher frequency than usual. That happens in Aicuña. The town of walnuts, of the steep street, and of the inhabitants who do not want people to take photos of them as if they were taking an x-ray.
