A family like this needs help—special help—more than most.
That, in essence, is the argument made by one mother in the opening article of this issue, and by another mother's testimony in a piece titled "Your Name Is a Trap," one of the books we recommend this time around.
It's almost a commonplace thesis, I thought, for readers of Ombre e Luci. Some of you might even say: "So what? Don't we already know this? The trouble is, it stays just words and nothing more."
True enough. After all these years of saying the same thing, it can sound worn out. But is it actually true that this help doesn't exist? Weren't families with a disabled child at home in worse shape years ago?
It seems to me that much has changed. Home care services, for instance, have brought real relief to parents who can access them. People have started to pay more attention to disabled people, thanks in part to school integration—though that certainly needs more work. Conferences, debates, television programs and films discussing these issues have multiplied, slowly shifting the culture we live in.
Yet to parents, these changes always feel like too little. Perhaps they had hoped, reasonably, for something faster and more concrete. Perhaps they're anxious about their child's future and don't notice these improvements. Some feel exhausted from carrying too heavy a burden for too long. Others seem not to see the help being offered to them, sometimes freely given.
I think of so many young people from Fede e Luce and other associations who have learned, over the years, to share a day, an evening, a few vacation days with friends who are a bit different.
To them, for once, I want to send my affectionate greeting. Not a thank-you—they don't want to hear that. But I feel compelled to say: don't stop. Don't grow weary. Don't give up the fight. Your small help matters more than you could ever know. Let me remind those who don't know or have forgotten: years ago, when we started the first Fede e Luce camps, there were no summer programs run by local governments, and school integration didn't yet exist. Your brave "vacations together" are still remembered as one of our pioneering achievements. Some mothers know this well.
Stories like this are possible thanks to the commitment of a small team of volunteers who have dedicated years to telling the story of disability in a new way. If you'd like to help us keep doing this, please consider supporting us today.
Many parents, when they speak of their difficult lives, say their days were without light until you came. You helped—without even realizing it—to change how they see their child, someone often viewed as nothing but a tragedy.
And then there's the profound joy of families who watched you receive Confirmation, side by side with their son or daughter.
It's worth remembering that years ago, at big family celebrations—baptisms, first communions, weddings—there was always a certain awkwardness about inviting that relative, that one who might bring along "that one." You, friends, broke that spell wide open. At your own weddings, you invite a whole community of "those ones," and by their presence they have given your celebration a larger breath. As for me, I'm still moved when I remember certain gestures from some of the older friends toward my daughter. Those gestures will live in my heart forever.
Be brave, then. Don't tire of being who you are—not "volunteers," not "caregivers," not professionals, but simply friends. Friends who, as friends normally do, sometimes see each other, get together, sometimes disappear because you have other things to do, and then come back. Sometimes you wish you could do more, but you can't. Just like real friendship works.
So it seems right to ask parents—who might wish to see you more often beside their children—to recognize that, small though it may be, your help has been and remains precious. And to remember, now and then, that your own lives aren't always easy either.
- Mariangela Bertolini, 1996