“My sin was cooking with rapeseed oil”

of the State of which they feel victims and request that the President of the Government, Pedro Sánchez, receive and listen to them. «Past six hours from the beginning of our presence here, we will start taking pills. We have the necessary pills to get to rest that you do not offer us, “snapped the statement with which the association announced its protest.

But about an hour after its deployment, the police have evicted them, after having tried it before members of security of the museum. Two of them, Luis Miguel and Carmen, have been transferred to the police station, where they have been released after 2:00 p.m. with the charges of disobedience to authority and disorderly conduct. At that time, dozens of those affected by the toxic oil syndrome were still waiting in front of the Goya statue to receive them with applause. Although the day has concluded without having achieved the main objective that they had proposed: a message from the Government to summon them to a meeting.

The consequences for those who this morning have been planted for hours in front of the museum, however, will come tomorrow. “For us, a day like this means spending three days without getting out of bed, with pains all over the body and unable to move,” laments María Pilar Mudarra, 62, who contracted the disease when she was 22. Along with her, His 15-year-old sister also suffered from a disease that caused 40 years later they still have to fight. “I would have to go to the physio every week and I hardly go once a month,” he says while criticizing that they are not given the recognition of victims that people who have suffered other circumstances, such as terrorism.

Change of house

To Agustina rapeseed oil was given to him by some friends. “What would they, the poor, know,” he says. That weekend, when neither her husband nor her two middle-aged children were home, she stayed with her eight-month-old daughter, her oldest son and her mother. «That was my sinThat weekend I cooked with that oil, “he says. From there, everything was discomfort: back, breathing, pain throughout the body … etc. But also the stigma he suffered from society, starting with his children’s teachers, who called him to ask him to stay for a while without taking them to school. She also felt rejection by her neighbors: «When they found out they didn’t even say good morning to me. We had to change houses, “he says helplessly. Prejudices that have led her to the fact that today, in the building where she has lived for more than 30 years, no one knows that she is one of those affected by toxic oil syndrome.

A sensation that Preciosa Nogueira Luna shares, who until now he had not dared to speak publicly about his illness precisely because of the stigma it carries. “Years ago we felt like plagued, people have always looked at us like strangers,” he admits, unable to avoid crying. With the Covid-19 pandemic, she has also relived part of what she suffered when she was only 14 years old. «It has reminded us of what we live. That if the contagion, the oxygen, the affectation … everything, “he says. One of the first memories he has about his ailment is also representative of what happened with the coronavirus: complaints in the hospital, with stretchers passing with deceased people. “It was very, very hard.”

In her case, she was the only one in her family who suffered from rapeseed disease and has spent years “of effort, struggle and rehabilitation” to now be able to lead a life, as she says, “a little normal, if that’s what it can call normality », although with post-traumatic stress that drags through everything lived. Have neuromuscular problems and had to be in a wheelchair for a time, although little by little he managed to walk again. “We are fighters,” she cries out.

“The manzanita”

«There is not a day when you wake up that nothing hurts. And I have been like this all my life, ”explains another of those affected who prefers not to identify herself, as she continues to carry that stigma that even now prevents her from speaking normally about her pathology. «If it is not essential, I do not count it. Most of the people around me does not know“, recognize. Many times, in addition, as the saying goes, the procession goes inside. «Some of us are like a little apple. On the outside you see everything fine, with good color, but on the inside you find a worm », compares Preciosa.

In addition to being received and listened to by the Government, what they demand from the platform is to obtain “the dignity” that they believe would give them to be officially recognized as victims. “We want to be recognized as victims. Ours was State terrorism, “they point out from the platform. Although many of them they received compensation Due to what happened, they say that it does not cover all the necessary expenses for their day-to-day life. “We need physio, rehabilitation, even some who cut our nails because we cannot do it ourselves … and nobody sees that and nobody understands it,” they criticize.

As they explain to ABC, the last time they had contact with someone from the Government was when the Minister of Health was María Luisa Carcedo. After her there have been two more: Salvador Illa and Carolina Darias. But no communication from the Ministry of Health. «We have called, sent letters, emails … and there is no way. Are second-rate victims»They lament. As they estimate, there are around 20,000 people affected by rapeseed disease.