"When Valeria was born, I asked myself: is being a father really this easy?" But for Antonio Bini, 53, from Monopoli, it had been anything but easy—before Valeria, there was Anita. Anita is 20 now, four years older than her sister. Born with asphyxia during delivery, she has a severe psychomotor delay. She attended public school only through fifth grade, and even then reluctantly—she couldn't adapt to the schedules and discipline. "My relationship with the school is still an open wound," her father 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 headmaster to let her come in later. The doctor said Anita needed to learn to do what everyone else does. Things only got worse. I still believe they could have tried."
Antonio's whole life is an effort to make things better for Anita. "Today my problem isn't my daughter's disability—I've accepted that. We were lucky, actually, because we discovered her condition gradually. We didn't have the sudden shock that parents of Down syndrome children experience. But sometimes I despair when I try to take Anita out, see people, do normal things, and she refuses. When she says no, it's no. Then I start thinking the problem isn't her disability but her laziness, her lack of will." In other words, Anita does only what she wants to do. Her father does everything else. "When you have a problem like mine, you push it out of your head and throw yourself into what needs doing." Antonio's family is active in the parish youth center—and that's one of the few things Anita does willingly. Beyond that, he has immersed himself in an organization called "Per loro" and will run the information desk on disability at the Monopoli town hall. "Parents need help, but they can't wait for miracles from heaven. They have to go out and find it, standing up for their rights. The laws exist, but to enforce them you have to push hard." Antonio is passionate about spreading this message to mobilize parents together. "There are so many mothers and fathers of disabled people in Italy—maybe they could found a political party and send someone to Parliament!"
This way of being a father—so focused on action, on participation, on speaking up, this anxiety of a father-citizen who wants his daughter to lack nothing that a civil society can offer someone disadvantaged—paradoxically it means he has to be away from home, away from Anita, more than necessary. "I have no free time for myself," Antonio says, "because the organization takes so much of my time, and my wife sometimes reproaches me for it." He knows the burden of the family falls mainly on the mother. "When we're both there and Anita won't leave the house, one of us goes and the other stays. But when my wife is alone, which is often, and Anita resists, just getting out becomes a drama. And it's always, entirely her drama to bear." The conversation with Antonio ends here. He has to go. He has an important meeting and can't miss it.
by Vito Giannulo, Ombre e Luci no. 92, 2005
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