In 2010, the English journalist Charlotte Raven, learned that she was suffering from a neurodegenerative disease known as Hungtington’s Disease. She had it in her body but the symptoms hadn’t yet appeared. She then decided to face her imminent future by researching on the subject, focusing on Venezuela, the country with the highest concentration of people with this disease in the world, in the midst of an unhealthy environment of poverty and scarcity of medicines and attention.
Raven was a columnist for The Guardian, the newspaper that contacted the Venezuelan documentary Vladimir Marcano to accompany Raven and make the photographic record of this investigation. Barranquitas and San Francisco, locations of the Venezuelan state of Zulia, where this genetic focus is concentrated, were the selected destinations for the investigation of the Saint Vitus Dance, as the disease is popularly called, a serious and rare neurological, hereditary and degenerative condition, which is deadly and has no cure.
Raven’s work, which meant for her to witness what would happen to her body in the future, was only the beginning of the photographic essay Marcano titled El Mal. The Venezuelan documentalist recalls the beginning of the project: “I was not sure what to do with this material, an exhibition, sell it as a reportage, but the idea was to spread this story in depth. Paolo Gasparini, through his Mal de Ojo publishing house, became interested in making a publication and put me in touch with RM in Mexico. They were interested in it because it was a real story. Then I contacted Charlotte again and told her I was interested in her writing something for the book, and she happily agreed,” he said.
By the time we were writing the prologue of the book, Raven already had the symptoms of the disease. The first paragraph of her text is devastating: “I first discovered I was at risk of developing Huntington’s Disease on July 7th, 2005. A family friend rang to tell me about my father’s diagnosis with the illness. I had never even heard of Huntington’s Disease. As I soon discovered, HD is a genetic disease that affects people in midlife, causing damage to the nerve cells in the brain. Symptoms of the disease include altered personality, jerky movements, irritability, and mood swings. These symptoms grow progressively worse. As I write, there is no cure for this illness. I was thirty-six years old when I found this out. My daughter Anna was a few months old. I was terrified.”
Visiting Barranquitas and San Francisco, communities where one tenth of the population suffers from Saint Vito’s disease, meant that Raven had to undergo the act of seeing herself in that mirror, but in adverse conditions to hers: “Some of the sufferers wander in the streets, looking for food or simply trying to escape their torment by moving around. The sight is extraordinary for anyone who has never had contact with people afflicted by the disease, whose jerky, uncontrolled gaits and grimacing faces are a testimony to their toughness,” recalls Raven in her testimony, which interweaves memories of her current life with those of her father, and that intersect with those of the characters in this document, who live in scarcity, in very poor conditions, unlike the writer, who has provided the necessary support to face the consequences that a disease like this brings for her and her family environment.
“The sufferers in these pictures have nothing. Their lives would be difficult even if they were not ill. The environment is antithetical to living positively with Huntington’s Disease: the unrelenting heat, those tin shacks, and the lack of social infrastructure. I cannot imagine anything more terrible than being poor and suffering from HD. Poverty amplifies the tormenting elements of this illness at every stage”, recalls Raven to mark the contrast between these two worlds that are affected by the same genetic condition.
So, little by little, Maikel, Maybelis, Limardo and Jorge begin to appear in the text, opening their homes and their lives to Marcano and Raven, photographer and writer, to share their tragedy, the same as thousands of people who for more than 100 years have suffered from HD in this region of Venezuelan Zulia. Marcano also shares his reflections on the subject in the forewords of his book: “Generations of sufferers have died in Barranquitas of this terrible illness, many of them determined to put an end to their own lives in the depths of Lake Maracaibo, unable to endure the inevitable outcome of their condition without adequate food, medicine, or attention, and without even governmental support. In the village, this combination of poverty and disease have created an apocalyptic scenario: I ask myself if it will ever end.”
El Mal, Vladimir Marcano’s book, is the product of an editorial alliance between Mal de Ojo, Ecléctica Editorial and RM. It has 120 pages with 74 color photographs. The format of the book is 28 × 28 cm and its design by Álvaro Sotillo. The first edition of 1000 copies is bilingual (Spanish / English) and was recently presented at Paris Photo.