In recent years, many fathers have spoken and written about their deep love for their disabled children. They have not shied away from their pain and anger, but instead have shared new ways of being present with their sons and daughters, inventing activities and spaces where their children can find some measure of independence after school. One of the most recent books on the subject—which we will review here—is Alla fine qualcosa ci inventeremo (We'll Figure Out Something in the End), by Gianluca Nicoletti, father of Tommy, an autistic boy. Nicoletti takes on the grave anxieties that fathers carry about what comes after they are gone.
Online, fathers have found a powerful platform. Many describe their experiences openly. One father spent the summer walking the Road to Santiago with his two sons, ages twelve and eight—the older one autistic—to raise awareness about the right to movement, accessible transportation, and participation in cultural, recreational, and sports activities. Some fathers have founded associations and taught their children entirely new skills: carpentry, delivery work (see "The Emotion Has No Voice," issue 125). The attention paid to fathers has certainly grown.
Last spring in France, director Nils Tavernier released the film De toutes nos forces (With All Our Strength), inspired by the true story of a father and son with neuro-motor disability. The two made their struggles public by competing in numerous triathlon races across the United States. Also in France, the magazine Declic, the French association for fighting myopathies (AFM), and Leroy Merlin have organized, for several years now, a competition rewarding fathers skilled at DIY projects and creative mothers for their innovations in daily care and independence for their disabled children—with genuinely impressive results. We don't know if Italy has anything comparable. Perhaps one of you can tell us.
The truth is, speaking openly about living with disability has never been easy for anyone. But for fathers, it was harder still—especially in the past. In thirty years of Ombre e Luci and 126 issues, only two or three have been dedicated to fathers. One father put it this way: "I am a father, and I have learned to remain unseen" (P. Bertolini). It is also true, of course, that many fathers have resisted their relationship with a disabled child more than mothers have.
Perhaps something is changing. With Mariangela, we had already decided it was time to speak about this again. We are trying to do so now, with the help of some fathers who have agreed to share their experiences and feelings with Ombre e Luci.
All of this speaks to the hope that animates a father who stands beside his children, despite the mistakes and limits of each of us—a father who cultivates and guards the possible dreams, for them and with them—and who in doing so bears witness to "hope for life, for the good that exists in it, in spite of all the evil and pain we experience daily" (F. Nembrini), giving meaning to the presence in the world of every child.
Cristina Tersigni, 2014