Breaking down models of perfection, accepting one’s diversity, clearing the topic of rare diseases: these are the messages of the book “My ears speak” Of Alessandro Coppola, a special boy suffering from Usher Syndrome 2, a rare disease that led to deafness and will lead to blindness. It is a story of how pain can be transformed into constructive energy and an invitation to affirm one’s uniqueness against all forms of discrimination with determination and extraordinary willpower.
A varied audience of all ages confronted each other, generating an interesting debate on the occasion of the presentation of Alessandro Coppola’s book. This event is part of numerous activities alongside CESVI’s “La Casa del Sorriso” in San Pietro a Patierno. A reality born in 2023 in collaboration with the Cooperativa Il Grillo Parlante Onlus which deals with wide-ranging situations of marginality and exclusion in vulnerable contexts, in particular children and families. “The presentation of the book is part of a series of events – in collaboration with the Department of Social Policies of the Municipality of Naples – which address social issues such as disability, marginalization, discrimination and diversity – comments Renata Molino, CESVI project manager in Naples – Alessandro’s story makes us reflect on the search for one’s identity and respect for otherness”.
Valeria Anatrella, president of the Il Grillo Parlante Onlus Cooperative, introduces the debate, underlining the importance for the community of promoting beautiful stories where a positive narrative emerges even in difficulties, while Stefano Piziali, general director of CESVI, highlights the value of hospitality in complex contexts as a resource, as places of aggregation and connection between different generations, attitudes and experiential backgrounds. Moderate Luca Trapanese, councilor for social policies of the Municipality of Naples, who emphasizes the importance of opening up to the dialogue of diversity, to give those who do not know these realities the opportunity to understand them, and adds: “We often don’t know how to deal with disability, we find ourselves unprepared, especially when it comes to of ‘invisible diversities’ as in Alessandro’s case, and adds: “Let’s start from our imperfections and make them become superpowers”.
In the book, Alessandro recounts his childhood lived in a loving and joyful atmosphere, surrounded by the love of his family. Then comes the bolt from the blue: the little one doesn’t seem to turn around when the teacher calls him. From here the investigations, the diagnosis and the sentence begin: “Medium-severe bilateral sensorineural hearing loss on the right and profound on the left”. At just 4 years old, the battle against deafness began, then the second diagnosis in 2019: a rare degenerative visual genetic disease, which will lead to blindness. All this makes him live more intensely, he enjoys every moment and finds beauty in the little things. But there is much more in the book: a message to his generation, a criticism of those models of perfection that social media offers us and which often do not represent us, making people and young people feel inadequate. Everyone has something unique and special that needs to be told, comments Alessandro. And again he talks about the gratuitous malice of those who bullied him for his disability which forces him to go around in a sweatshirt and hood even in August, the pain, the difficulties in dealing with the disease. But also beautiful moments: the memory of the teacher, a point of reference for him, because as he says she never made him feel like “the only disabled person at the banquet”, then his friends, his family, his mother: friend, manager and port safe place to take refuge, always. Despite the difficulties, no one is able to undermine his strength. Alessandro is cheerful, extroverted, he takes a bite out of life, travels, goes to London and Barcelona, passes his high school exams brilliantly, is good at sports, dancing and is also a model of “inclusive” advertising campaigns to communicate to everyone the beauty of the imperfection that is in each of us. Furthermore, he carries out his personal mission with commitment: sharing his message in schools, juvenile prisons and sports clubs. And he concludes: “I’m not angry with life, being angry would mean being angry with my parents who gave me life, and it’s the greatest gift anyone can give you.”
CESVI Foundation is a secular and independent humanitarian organization founded in Bergamo in 1985. For almost 40 years it has brought the heart, generosity and industriousness of Italians to emergencies and the poorest places in the world through projects to fight hunger and major pandemics, for the protection of people and the environment. CESVI acts by providing tools and skills so that the populations helped can then be architects of their own future. Awarded three times with the Budget Oscar for transparency, it is part of the European Alliance2015 network. For info: www.CESVI.org
Tags: Books ears speak fragility strength
