Everyone has noticed how little we talk about fathers in the world of disability. As my husband used to say, even Ombre e Luci forgets them far too often.
It's true—but it was far worse in the past, when fathers stepped back, sometimes too far, until they vanished altogether in some cases, leaving the entire burden to the mother.
"She understands him better, she knows how to care for him, I can't manage it..." And mothers often preferred to be alone in this role, ready to make enormous sacrifices for their child, yet forgetting that the husband—that unspoken father—still needed, perhaps now more than ever, some attention of his own. By feeling incapable, or because he truly couldn't manage, he was forgotten. Sometimes even unfairly blamed for leaving everything to her.
Yet it's also true that some fathers were involved from the start, dedicating themselves generously to their difficult child. They rushed home from work to be there for bathtime, dinner, doctor's visits, pharmacy runs. They took the night shift when their son refused to sleep...
And so it happened that in some families, the marriage fell apart, with all the painful consequences we can imagine. In others, though, the presence of a disabled child brought unity, solidarity, and selflessness—ensuring that the weight didn't fall on one person or the other children alone.
But how are things now? There is more support today, we can't deny that. The isolation families once faced has eased—through school integration, through more attentive friendship and community participation.
In this Christmas issue of Ombre e Luci (or shortly after!), we want to talk about fathers of children with disabilities—today, in 2005.
From what little I see and hear, it seems to me that much has changed—perhaps because fathers in general are now more present and involved in family life. Perhaps I'm mistaken.
Why not help us put together this special issue, dedicated especially to fathers who are normally far too silent and withdrawn? Ask the younger fathers you know for an article, a letter, their reflections, their struggles and misunderstandings...
Ombre e Luci will always be a small magazine, but we want to keep giving voice to those who feel forgotten and alone.
Mariangela Bertolini, 2005