"Cuba Down" is a project that aims to investigate the reality of those born with Down syndrome in Cuba, exactely in Santiago de Cuba. The project delves into the most intimate aspects of their lives, seeking to understand, through their experiences, the social aspects of a complex country like Cuba.
The situation for individuals with Down syndrome in Cuba is quite challenging.The state provides special schools, categorized based on the individuals' disabilities, offering a specialized educational program from preschool to high school. There is no program to support them outside the school system.
After the education program, the responsibility is left to their families, who receive only a small financial contribution from the state.
The absence of family associations leads to significant deficit for these individuals, who are accustomed to interacting with their family, but have no interaction with others like them, leading to a form of isolation.
This project focuses on the concept of isolation, showing the nuanced aspects that Down syndrome can bring forth, analyzing them across various social classes, up to the extreme situation where lack of care and school attendance can lead.
The story includes three people: Rudi, a 52-year-old woman living in extreme poverty cared for by her 58-year-old sister; Jenny, a 22-year-old who lives with her mother and grandmother; and Maria, a 19-year-old dancer who completed her studies a year ago and lives with her mother.
"Cuba Down" is a project conducted entirely in the city of Santiago de Cuba, where I spent ten days following these individuals in their private lives, intimacy, entering their homes, their families.
I entered Jenny's home, welcomed by the warmth and kindness of her wonderful family, where I captured her moments of sweetness and everyday activities always accompanied by her mother. I followed Maria's life in the outskirts of Santiago, in a humble home with her mother, capturing her passion for dance and witnessing a small performance in the streets of Santiago. Lastly, I learned about Rudi's story, the most painful of all, living in an extremely small house with her sister, sharing a bed due to their impoverished situation, unable to afford another one.
These stories provide a glimpse into what Down syndrome truly is a condition that, if followed with the right medical and social attention, can allow for a nearly normal life. However, if neglected, it can be devastating and disabling.
My name is Andrea Fucà, and I was born in Palermo on November 20, 1991. I lived in Palermo until 2013 when I completed my Bachelor's degree in Energy Engineering. Since 2013, I have been living in Turin, where I earned a Master's degree in Nuclear Energy Engineering. I currently work in this field.
My journey into photojournalism began in Palermo as a self-taught photographer, where I started to document the neighborhoods of the historic city center. Unlike other cities, Palermo's historic center is not only elegant but also rich in working-class districts and historical markets. In November 2021, I decided to take my first photography course. participating into workshop in Milan organized by Leica Akademie, with Valerio Bispuri as the instructor. It was an intense workshop, with the aim of creating a narrative after a day of shooting, spent with a person chosen by each participant to tell their story through photographs.
In February 2022, following the workshop experience, I decided to enroll in Valerio Bispuri's long-term reportage and storytelling school, and I have been his student since then.
From that moment on, I began my long-term reportage project to tell the story of Down syndrome. Initially, the project focused on Down syndrome in Italy, but in July of this year, after another workshop with Valerio, this time in Santiago de Cuba, I decided to expand the scope of the project to portray the lives of people with Down around the world.
Phone number: +39 3804792389
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