"When Valeria was born, I asked myself: is being a father really this hard?" For Antonio Bini, 53, of Monopoli, it had been—very hard. That was before Valeria. Before Anita.
Anita is 20 now, four years older than her sister. Oxygen deprivation at birth left her with serious psychomotor delays. She attended public school only through fifth grade, and reluctantly at that—the rigid schedules and discipline made it impossible for her to adapt. "School is still an open wound for me," Antonio says. "In elementary school, the main problem was the start time. Anita can't handle waking up early, so I asked her doctor to request permission from the principal to let her come in later. He said Anita had to learn to do what everyone else does. Things only got worse. I still think they could have tried."
Antonio's entire life has been an attempt to make Anita's life better. "Today, the problem isn't my daughter's disability—I've accepted that. And we were lucky, actually. The discovery of her condition was gradual. We didn't have the sudden shock that parents of Down syndrome children experience. But sometimes I feel despair when I try to take Anita out, to see people, to do normal things—and she refuses. When she says no, it's no. Then I start thinking the problem isn't the disability at all. It's that she's lazy, unmotivated." In short, Anita does only what she wants to do. Her father does everything else. "When you're dealing with a problem like mine, you push it out of your mind and throw yourself into what needs doing."
Antonio's family runs the parish oratory—one of the few activities Anita actually enjoys. Beyond that, he has poured himself into an organization called "Per loro" that will manage an information desk on disability at Monopoli's city hall. "Parents need help, but they can't wait for miracles from heaven. They have to go and find it, by standing up for their rights. The laws exist, but making people follow them takes work—a lot of work." Antonio is passionate about getting this message across: parents need to mobilize, to demand.
"There are so many mothers and fathers of disabled people in Italy—maybe enough to start a political party and send someone to Parliament!" This fatherhood of his, entirely focused on action, on participation, on speaking out—this anxiety of a citizen-father determined that his daughter lack nothing a civil society can offer someone disadvantaged—sometimes, paradoxically, forces him to spend more time away from home than necessary. Away from Anita. "I have no leisure time for myself," Antonio admits. "The organization takes up most of my time, and sometimes my wife resents it."
He knows the weight of the family falls mostly on his wife's shoulders. "When we're both home and Anita doesn't want to go out, one of us leaves and one stays. But when my wife is alone—which is often—and Anita resists, getting out becomes a battle. That battle is always hers, always falls on her." The conversation with Antonio ends here. He has to go. An important meeting. He can't miss it.
edited by Vito Giannulo, 2005