Rosita turned eighteen. Almost every time I talk with my sister Lucia, our mother jumps in: "What's wrong? Leave her alone!" You'd think my words might kill her. If I were a stranger—a potential threat—her protectiveness would make sense. But I'm Lucia's only brother. We need to talk. We need to understand each other. Because when our parents are gone (God willing, not for a long time), I'll be the one taking care of her. How can I help her learn anything if she sees me as the enemy?
What makes me angriest, though, is this: when Lucia and I are alone, we get along beautifully. We laugh. We have fun. That laziness people say is built into Down syndrome? It vanishes. My words mean something to her. But when I watch my mother and Lucia talk, I see something else. Lucia acts like she's free to ignore her—like she thinks, "Mom will just give in anyway. She always does." She knows she can get away with it.
I've been fighting this for years. And I see it in almost every family with a disabled child. Parents can't hold the line. They give in to every whim, every demand. They tell themselves it's love.
Many parents respond to this by saying: "You try raising a child with that kind of pain. You try it." And I say back: "You think we siblings are happy about it? This burden will be ours one day. You have an obligation to make it lighter."
You have to be strong. Don't hide behind pity or compassion. Don't use your own suffering as an excuse. Because when you do, these kids learn to settle. They learn to expect nothing of themselves. And everyone around them sees only their deficits—not what they're actually capable of.
My sister is proof of this. She's sensitive. She's affectionate. She could do so much more. She could have real independence. But it's the parents who don't see it. The fathers especially—they check out. Maybe they think you can't reason with a child who has cognitive limits. Maybe they think a man shouldn't have to argue with his kids, especially not kids like these. So they stay silent.
Mothers are usually stronger than their husbands. That's the way it is. But they forget something: brothers are still brothers. We're often the same age. We can help. We want to help. But you have to let us.
So here's what I want to say: Parents, listen to us. Don't make us angry. Because your children's future depends on us.
- Stefano, 1996
===FINE===