Diana Torres He is 30 years old and four years ago he was diagnosed with thoracic outlet syndrome, a condition that does not allow him to carry heavy objects or abuse his physical body much, because it causes pain, fatigue and even immobility. With the passage of time, the editor and researcher from Quito has learned to be empathetic with this condition, and even made it possible to create body, under the El Hipopótamo publishing label.
This book brings together other people who, like her, live every day with a not so visible disability. “There were days when I had to stop writing because my hands hurt so much,” reveals. “I have two mini ribs on top, and some days I’m fine and others I’m not, because I slept badly, because the nerve was imprisoned and I can’t move my hand, or you feel that the nerves are stretching you and there is tension above,” he says.
Torres says that the idea for the project arose after attending a conference on Peruvian huacos, in which he thought about trauma. “When you have a sick body you have multiple traumas, everywhere. The personal trauma, the social trauma, the medical trauma,” he says.
She immediately contacted a friend to tell her her idea, and together they began searching for the people who would write in the book. “I didn’t want people to talk about the illness being the center, but rather everything that comes with being a person with a disability, with all the notions that this implies: how it affects you, how it goes through you,” he says.
When Torres started the project she had already been diagnosed three or four years ago. “The grieving part had already passed and I was precisely seeing what could be gained from this. How can we interfere in realities? says.
In this way the voices of Cristina Mancero, Mauricio Montenegro, Gina López, Valeria Galarza, Danny Sornoza, Vivian Rodríguez, Juan Secaira Velástegui, and Torres. “I told them that it had to be done carefully, patiently. That’s why there wasn’t a super strict deadline, because you can’t try to impose this rigidity on your body, which will only be fine one day and the next you don’t know,” refers.
Through this book and the honesty of its authors, readers are immersed in a universe where pain, illness, rejection, misunderstanding, anguish, shame, hospitals and medications are part of everyday life.
This 161-page little book was written by people with different ailments, such as heart malformation, voice disorders, deafness, syndromes, neurodegenerative disease, endometriosis, among other disabilities. And with the intention of showing diversity and difference, it is not pigeonholed into a single genre: there is a story, an essay, and poetry.
“Each one approached from the format that seemed most accessible to them, which also seems like a great thing to me because it reflects this diversity that exists within disability, “We are not homogeneous,” says the head of the project.
Of the eight authors, only three are men. Torres says that it is due to their lack of willingness to tell their story. “TO Many men are afraid to talk about their disability because of this sexist society. in which we are, in which man is always the one who has to do, the one who has to take care of, the one who has to carry, but what happens if your body cannot take care of itself in the physical way that society tells you? to do it?” he asks.
Secaira, author of nine books of poetry, opted for this genre to give verses for the first time to his amyotrophic lateral sclerosis, diagnosed two years ago. “It was hard to face myself. and understand many things that at first always tend to be denied to the patient,” he declares. “There is a lot of anger, irony and bravery in the authors,” keep going.
“I think that body It should be a reading for young people, for children, so that they don’t see us strange on the street. when we go there,” adds the man who lost his right hand, uses a wheelchair and dedicates himself to painting. “We are people who go through a lot of sensitivities and a lot of decisions that must be respected,” says.
More empathy for disabilities
Disability not only faces the pain of the disease itself, but also the invisibility and exclusion condemned by the lack of access, tools and empathy in society and health in Ecuador.
Secaira lives in Quito and narrates the social violence that lives in the streets and that makes his mobilization difficult. “I don’t have ramps for the most part, I go down the street with one more car, with the dangers that entails, or the taxis don’t want me, or so many difficulties that they think that one no longer exists, when one is alive. “I think there is an element of negativity,” he says.
Another problem that the book also exposes is the inefficiency in diagnoses, in most cases the response arrives very late. This is how Torres explains it in his work. “We have all gone through a journey to reach our diagnosis, years pass, and they are years that you are in pain, they are years that you are on medication, they are years that generate too many traumas,” says the researcher.
“It is a very corporatist medicine, which only gives the patient something so that they recover as soon as possible… to the extent that the body is functional, it will receive more or less attention,” he adds.
body It is available at the La Casa Morada bookstore in Guayaquil. (YO)
