«Can we build a network among siblings of people with disabilities?" The question comes from someone we've known since 1991: Luciana Spigolon. "I live south of Padua with my brother Giorgio, 62, and my sister Cristina, 57. Both have severe disabilities and use wheelchairs. Though I've always helped care for them, since our mother died in 2012, I'm responsible for them completely." Back in 1991, we published a survey to understand the need for group homes. Luciana—now 61—had tried to connect her parents with local organizations, "but they weren't inclined to look beyond family and home. My siblings still lived at home then; we had no outside connections. They started attending a day center in 1998, only after I knocked on many doors. My parents came from a simple farming background with no money or education to spare. We were surrounded by suspicion and judgment from others. It was like that then; it still is now. The only offer came in the sixties—they could send one of the three of us (just one, so they'd have to choose) to an institution. When my parents saw the place, they said no. They wanted to keep their children at home. The priest, the mayor, everyone with an interest reacted like this: 'We help you and you refuse this opportunity?' My parents paid dearly for refusing to institutionalize one of us. But in that moment, they chose what was right: to save a life and keep it here."
How are Giorgio and Cristina doing now?
Giorgio worries me more—he's more fragile. Cristina is in good health. She rarely gets sick.
What's a typical day like for you?
Saturdays and Sundays we're here at home, the three of us from morning to evening. I care for them and the house. When they go to the day center, they're back around four. I get up at 6:30 to get them ready for nine o'clock.
We used to have a home aide who, together with the caregiver I paid for four hours, could get both of them ready in 40 to 45 minutes. But there was always turnover—someone would arrive, then leave, then someone else would come. Every time felt like starting from scratch. At some point I gave up because a service like that wasn't dignified. The caregiver was with us ten years, but then she left. Since then I've been on my own, and that's fine. On top of everything else there's the house, the paperwork. I have no one to talk things through with, so I make mistakes. I should ask for advice, but finding it is hard. I'm better with practical things. The bureaucracy weighs on me.
I really want to create a network with other siblings, to talk with them and share the beauty and richness of standing beside our brothers and sisters
I really want to create a network with other siblings, to talk with them and share the beauty and richness of standing beside our brothers and sistersHow did you come to make your vows with the Apostles of Charity?
I studied architecture for ten years—that was my father's dream. After art school I went to university in Venice, but it wasn't for me. A course in education came up—psychology and pedagogy fascinated me. Of course my parents fought it; they didn't want to hear about it. Those studies helped me understand my family, the difficulties, the failings, the sorrows they endured. I have nothing to blame them for. They had to make hard choices and live through real losses, in a time when there was nothing. After I finished my professional education degree, I wanted to go to La Nostra Famiglia. In the nineties I'd asked about my sister too, since she was younger and could be admitted. She did spend a couple of stays there. In 1995 I was on a personal spiritual journey, and at La Nostra Famiglia, I met the director—an extraordinary person, the right person. That's when I understood what I wanted.
You had a vision of a life community…
It's always been a dream of mine, but I can't find the right people. Building community today is different from what it was thirty years ago. Now I see it also as security for the future, so I won't be here alone when I die.
Everyone in your town has known you forever. What keeps them away?
People don't recognize that families with an elderly person or someone with disability in the home need support. The loneliness grows. A friend suggested I write a book during covid—to say that even in this life you can find light, that it can be a school of life. I wanted to show how disability and suffering can be a reality that gives life, moving past this idea of "misfortune." In the Veneto, people call it a misfortune. And we had so many misfortunes, by their count.
If you could change one thing, what would it be?
I wish I had the courage to leave everything and move to the Villaggio Senza Barriere in Bologna. We go three or four times a year. There, we're all equal and we're happy. I have more real relationships with those people than with anyone in my town. And I really want to build a network with other siblings. It would be so important. To talk with them, to share the beauty and richness of what we do—standing beside our brothers and sisters. The struggles, the obstacles we face—civil, bureaucratic, social. If needed, to speak up and demand change. To share knowledge and information. As the years pass, I feel more and more the weight of isolation. I want to do something about it. Our life as siblings is precious—with its darkness and its light, its victories and its struggles. I think of the things I've had to face in recent months, the unexpected crises. If I'd had friendships with others living my same life, they would have helped me, encouraged me. I don't think I'm the only one with these needs. Come on. Let's build this network. We have so much to share.