It's a warm evening in early June. I'm tidying up the last things before bed, after a long day. Tomorrow, as always, there will be much to think about: construction work starting on one of the Carro buildings, the whole household family leaving for a seaside stay, Covid protocols to update, and all the daily tasks—family and community—that fill my life.
Suddenly, a message appears on my phone: "Roberto has flown to heaven...." His sister Mariangela is writing to me. My breath catches. The news is so sudden, so painful. As my eyes fill with tears, in an instant I'm back at the beginning of 1978.
I've just started medical school (I see myself becoming a psychiatrist; Franco Basaglia is my lodestar). For two years I've been immersed in the experience of the newborn Fede e Luce movement. Following the early summer camps at Alfedena, we are now trying Sunday gatherings at "Casetta" in the Nazareth Institute in Rome, spending entire days with our disabled friends who most need to get out of the house, giving their parents a break. There's a boy not yet thirteen—lively and charming—who speaks only in a few scattered words, walks poorly, and has an unusable arm. He seems locked in his own private world. I quickly learn his surprising abilities: Roberto (that's his name) has an incredible knack for mischief. His good arm moves with supersonic speed to strike any surface—human or otherwise—causing maximum chaos. He also seems to have a "preference" for people smaller or more fragile than himself as targets for his fun, which makes him all the harder to approach.
I don't know what draws me to him. Probably the mystery of his mind, the hunger and ambition to enter it, to make a connection that goes beyond the need to control him. I begin spending time with him, visiting his home. The first time I walk in, I notice things: electrical outlets and switches torn from the walls, damaged wallpaper, furniture in disrepair. I understand the daily struggle his family faces. An incredible family: a Sicilian military father, a Venetian mother, two older siblings and a younger brother—each one sweeter than the last, full of love for their lively son and brother, possessing a sense of acceptance and dignity that is, frankly, astonishing. They carry this weight almost alone. I see their patience, their effort not to provoke him, their worry when in his worst moments he turns his destructive energy on himself, biting until he bleeds, thrashing about.
Over the course of that year, with other young friends, we begin organizing outings for him—taking him swimming every week, always at least three of us. My relationship with him deepens. We begin to know each other. I start to read his moods, especially to anticipate signs of distress. This allows me to feel more calm and at ease, even when I start spending time alone with him. Meanwhile, he's growing, becoming a teenager. Compared to the year before, he's much bigger. But now our relationship is on equal ground, physically and emotionally. We begin taking him to Fede e Luce camps—his first times away from his family, the first breaks his parents have had since he was born.
By now I'm almost family. One day I decide—perhaps rashly—that Roberto and I are ready for another step: to travel alone together in the car to "Casetta," without other escorts. After thinking about it long, I decide Roberto should sit in the front seat beside me, where I can watch him constantly and be ready for any behavioral crisis. Yes, his good arm is right there on my side. But I'll be calm and very careful. During the drive, I'm tense. At one point, as I slow down for a red light, I see Roberto's arm moving toward me. I brace myself, waiting for the blow. Instead, his hand descends gently onto the parking brake and pulls it. "Semaforo..." he says—traffic light. My relief and surprise are equally intense. That day I discover, perhaps once and for all, his intelligence and his "presence," trapped behind an anxiety that makes him sometimes destructive. That day, in those months, my first true calling is born: that my future—my human and professional choices—will have Roberto and others like him at its center.
In that day, in those months, my first true calling is born: that my future will have Roberto, and others like him, at the center of my human and professional choices.
In the years that follow, my relationship with him grows closer, especially with his family. His mother Lina shares her stories, her struggles, her anxieties and losses, but also her hopes, her dreams, her visions for Roberto's future. By now he's attending a local cooperative, with home support services, spending at least part of each day outside the house. This experience, combined with what he's been living with Fede e Luce for years, is gradually teaching him more appropriate behaviors—at least when he's with people who know him, whom he trusts, and with whom he can find harmony, even in respecting certain rituals that calm him.
My own life is changing too. My personal search for meaning is leading me to unexpected, radical choices. In 1990, I choose to live in community with the foundation, co-founding the "Carro" community, where I will live with other people, including those with serious disabilities, to create a family home. Perhaps a circle is closing: with Lina, with Mariangela Bertolini, the founder of Fede e Luce, I have spoken and dreamed many times of seeing family homes with the spirit of Fede e Luce. What seemed like a dream is beginning to become reality—small, but real. In my vision, in the depths of my heart, there's always the possibility that one day it could become Roberto's home too. I know his mother harbors this hope, that it gives her light for the future. Lately that light has dimmed: Carlo, Roberto's father, has fallen gravely ill, moving in and out of the hospital. With Ivana, my fiancée and companion at the Carro, we arrange for Roberto to spend a few days in the community. Across all of Rome, there are no facilities that can provide emergency care like this. Over a few years, the Carro will create at least a dozen such places. It's during one of Roberto's stays at the Carro that his father dies, surrounded by his family.
In 1994, when Ivana and I marry, Lina is my wedding witness. By now I'm almost a son to her. After his father's death, and given the logistics of not being able to house him full-time at the Carro, Roberto is fortunately placed in an experimental residential program through his local health authority. Meanwhile, the Carro itself evolves and moves to a new location. In the new plan, one of the residential units is meant specifically for people with needs like Roberto's—people who still have no place to live beyond their families. Of course, after some years in his new situation, it would be wrong to think of moving Roberto again, even though his mother continues to believe the right place for him would be at the Carro.
Years have passed. In recent years, I haven't been able to see Roberto myself. I've stayed in touch through his mother and siblings, through occasional photographs. Then Lina too passed away a few years ago. From time to time I'd receive news or photos of Roberto from his siblings. A couple of years ago he was hospitalized, and came home with even more serious disabilities. But I didn't know he had gotten worse again.
Dear Roberto, the emptiness you leave in my heart matches the fullness you gave my life—an indelible, beautiful mark for which I thank God every day. I thank Him too for your sweetest mother, and for all the "special" mothers who have been and are the light of the Carro, born from the desire to support and ease the anxieties and worries of the "after us"—worries all the more serious the more their children need special care and attention. They have allowed me to become, in some way, a brother to their beloved children.
Goodbye Roberto. Live your new life with your mother and father, happy and free. Thank you, my friend and brother forever.
