Mondo Down

Andrea Fucà

“Down World” is a project that began in February 2022, aiming to depict the reality of those born with Down syndrome, or as it is now preferred to be called, trisomy 21, by delving into the most intimate aspects of their lives. Today, most people are aware that many individuals with trisomy 21 are able to lead normal lives, working and forming relationships. However, few (probably only family members and professionals) are aware of the efforts behind achieving this goal. Down syndrome can encompass a wide range of experiences, but all are characterized by a strong sense of belonging to a true community and an identification that seeks an active role within society. My journey within trisomy 21 spans three countries: Italy, Cuba, and Morocco. In Italy, most of the individuals I have met are very aware of the disabilities caused by their syndrome, which often leads them to have a great sensitivity and emotional depth towards the world around them: a continuous whirlwind of emotions, often volatile but always sincere. This is the result of extensive work that goes beyond schooling, often carried out by family associations, which organize activities aimed at integrating individuals into society and stimulating their psychomotor skills from a young age to make them as autonomous as possible. The situation for individuals with Down syndrome, or intellectual disabilities, in Cuba is quite challenging. The state provides so-called special schools, divided into categories according to the individuals’ disabilities, which accompany and educate them from kindergarten to high school. However, there is no program to assist them outside of the school curriculum. After turning 18 and completing their education, the responsibility for these individuals is entirely left to their families, who, where possible, continue their educational journey, receiving only a small financial contribution from the state. The absence of family associations, as seen in Italy, leads to a significant deficit for these individuals, who are accustomed to interacting with their entire family and social circle but have no interaction with peers, leading to a form of isolation. Moving on to Morocco, where the situation is even more complex, as the country has only recently begun implementing integration policies for people with intellectual disabilities, including Down syndrome. Until about a decade ago, Down syndrome was a taboo for Moroccan families, and individuals with Down syndrome were considered shameful. Today, the country is undergoing a transformative change, with the King of Morocco promoting integration policies, opening both public and private schools to individuals with trisomy 21 and striving to integrate them into the workforce. However, very few Moroccan children with trisomy 21 actually attend mainstream schools alongside their peers. The majority of them receive education and support from associations, partially funded by the government, providing professionals such as speech therapists, educators, psychologists, and teachers. Despite the significant achievements of these associations, including facilitating some individuals’ entry into the workforce, there remains a significant barrier to fully integrating these individuals and permanently removing them from isolation.

“Down World” is an anthropological research project to truly discover who people with Down syndrome are in the world, digging into their emotions and seeking understanding through their small gestures, embraces, and the most intimate aspects of their daily lives.”

My work began in Italy almost two years ago, thanks to the support of some associations that believed in the project and connected me with the individuals in their association. For the first few months, I spent a lot of time with the association members, participating in their activities to truly get to know individuals with trisomy 21 deeply, all without ever using a camera but simply observing, trying to understand who they were and what they felt. In May 2022, the work delved into the lives of Stefano and Marta, a couple who have been together for 7 years and have been living independently for three. Through Stefano and Marta, I explored the concept of autonomy for people with Down syndrome, and to this day, I have continued to follow them in all aspects of their lives, accompanying them with friends and during their weekly activities, even attending personal events like Marta’s 30th birthday. Subsequently, my research shifted to those who neither live independently nor with family and often end up living in communities, starting with Mara’s story, a 48-year-old woman living in an apartment with Anna, another woman with Down syndrome, and Caterina, a 50-year-old with some cognitive deficits.

In July 2023, I traveled to Santiago de Cuba, curious about the lives of people with Down syndrome in this country, to understand if it could be compared to the experiences of those in countries like Italy. The Cuban part of the project focused on four different characters: Rudi, a 52-year-old woman living in extreme poverty cared for by her 58-year-old sister; Enrique, a 41-year-old man who, despite attending special schools, struggles with communication; Jenny, a 22-year-old who lives with her mother and grandmother; and Maria, a 19-year-old dancer who finished school a year ago and lives with her mother. 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 she put on in the streets of Santiago. I met Enrique, who, with his mother’s help, allowed me to enter his world of small gestures and actions. Lastly, I learned about Rudi’s story, the most heartbreaking of all, living in an extremely small house with her sister, sharing a bed due to their poverty.

Finally, in March of this year, intrigued by the significant integration initiatives Morocco is undertaking, I went to learn about the realities of an association working in the city of Mohammedia. There, I met many people with trisomy 21 of various ages, from as young as 5/6 years old to as old as 34. I documented the great work these individuals do with people with trisomy 21, despite limited funds, allowing Taha, a 10-year-old, to pursue a normal education by enrolling him in public school or addressing the severe language problems of eight-year-old twins Amin and Reda, who previously attended another association where they reportedly suffered abuse.