Last October in Genzano, families and friends from Fede e Luce communities across central Italy (Kimata) gathered with experts to explore the law on life after parental care—what Italians call the "Dopo di Noi." The training day was called Raise the Sails!
The room was full. Parents—even some who rarely come to these things—and friends. So many of them. And I was grateful then, and I remain grateful now. Because the challenge being posed, to devote part of a weekend to the delicate subject of what happens after our parents are gone, demanded an audience that included friends; friends who don't offer you answers but will hold your hand when you have to find them. The more difficult or far-reaching the decision, the firmer and more conscious that hand must be. That Saturday morning we had people who were specialists and deeply knowledgeable—by profession, by role—ready to speak. But how should I introduce them? How could I broach a subject that touches the deepest wounds in the hearts of our families without some preamble? I decided to speak as a sister, as a friend, as a daughter. Because that is who I am within my community and within Fede e Luce.
And so I thought about our boat's journey—a long and rich one, not just in the forty-plus years we have lived here in Italy, but in how we have learned to transform ourselves into a vessel that gathers an entire region of different cultural and social realities, held together by the same ideals and principles, and finally—an invitation to raise the sails toward the future.
Then I stumbled into that black hole made of fear. A fear that sometimes paralyzes. Of things left unsaid. Of the unknown. The kind of black hole that makes anyone tremble—especially those of us aboard that boat, without exception of role. Family members. Young people with disabilities. Friends. I want to underscore the role of family, because the future of a person with disability embraces the whole family, just as the present does. And I want to underscore again the role of friends, an irreplaceable emotional anchor. That black hole of "what comes after"—it is a problem we all know. Cardinal Martini, who understood so many dimensions of disability and was a true friend to Fede e Luce, spoke of it clearly in his preface to In the Same Boat: "Among the greatest worries for parents is what will happen after we are gone. Who will care for our children's lives, and where? Who will love them and help them as we have, protecting them from harm? Who will truly understand their pain, the things they cannot speak? How will they navigate the move to a different family life, when they are so accustomed to their home, their room, their belongings? All of these are troubling questions, heavy with suffering and anguish. We can draw some comfort from the testimony and experience of others. But often that is not enough. Real problems need real answers. Yet those in difficulty often do not ask for a solution so much as something more personal—nearness and friendship as a sign of true solidarity." That was August 2001.
Today we have a law that bears this name, and we must all reflect on it and learn about it, because each of us has a role to play. I believe the heart of it is this: to ensure that each person sets out to sea, raises the sails, each with their own strength and their own capacity, each with their own role—the parent, the sibling, the person with disability, the friends. It may sound paradoxical, but the law, read carefully, invites us to respect the will and the desire of our special children, siblings, and friends. It asks us to follow that instinct of nature that moves the mother bird to push her chick from the nest. To set out to sea. To take flight. To raise the sails. To make your own life a place where you are the main character.
My brother Raffaele taught me this. My special brother. Despite the vague and unspoken plans my family harbored for a lonely, sad future for him—dependent on caregivers and sisters—he deliberately chose to go and live in a group home.
When he asked, I felt guilty. I was afraid. I wrongly thought there was no room for any decision of his own. I was wrong, and I am ashamed of it. From that moment on, I changed course in how I saw him too.
But if I was able to bear that separation emotionally, if I managed to give that fledgling—who was wiser than I was—a push from the nest, it was because Enrica, Giovanni, Alberto, and Matteo opened my eyes. They helped me understand the freedom in his choice, the dignity of his path. A dignity that my brother was, in some way, offering to me—far more than I was offering to him. My brother was teaching me that you can change your life. And to understand that, I needed the friends of Fede e Luce. They showed me that his choice for freedom and autonomy was the greatest life lesson among all the many lessons my brother was giving me.
I remember dinners at the Nucci home, and the loving wisdom of Giorgio, to whom I dedicate these few lines.
Letizia Lanzetta, 2018