That Project Is Wrong
I have been receiving your magazine for several years and have always read it with interest, finding in it ideas and material for reflection. The topics you cover and the information you provide matter to me because I have a son with intellectual disability—he's thirty now—and I work actively in the field of disability advocacy. Even when I disagreed with something in your pages, I have always considered you intelligent people.
I was therefore surprised by the entirely uncritical way you presented the "Progetto Complemento" in issue 50 of Ombre e Luci—a project ANFFAS intends to build in Rivarolo Canavese.
Without dwelling on other concerns I could raise about the Rivarolo structure and its history, I want to share some reflections our coalition of disability organizations developed as soon as we learned of this plan.
It is deeply troubling that anyone would propose concentrating thirty families in one location—families united only by having a disabled child. Add these to the thirty who already live in the three existing group homes, and you have sixty intellectually disabled people in a single facility with all the hallmarks of an institution: a perimeter wall, locked gates, a centralized building with shared services rather than small independent living units. This project uses an unfinished wing of the existing structure.
What guarantees exist that residents will remain in their group homes after their parents die or become unable to care for them? There won't be room for everyone. Then what? Further expansion of the institution, or moving the young person elsewhere—so much for limiting the trauma of separation? And who will care for aging parents who can no longer manage on their own? Perhaps the Foundation. But in that case, we're looking at creating a residential facility for elderly and disabled people with a capacity of 120 beds (if we end up with sixty parents needing full-time care).
It is already reprehensible that the regional government would propose such a thing. But that a disability organization would—I find that scandalous. I don't know the terms of entry into this project: what families pay, what agreements exist, and so on. But I suspect families will face unpleasant surprises. There are far better solutions for supporting families before and after a parent's death.
Maria Chiara Ciglioni
Parma, September 23, 1995
On our seventeenth wedding anniversary, we felt the need to celebrate with the old friends from our Parma group.
Yes, with them—the people who brought us together so long ago, in 1975, on pilgrimage to Rome for the Holy Year.
We met on the train that carried us to the great Fede e Luce celebration, and from that day on we never parted. But we owe a special thanks to our friend Roberto Renassi, who was supposed to travel with his mother, but felt ill at the last moment. His mother had to give up the trip. So I, Beniamino, was called to take his place. That substitution was a gift: my husband, Gabriele.
Over the years our family has been blessed with two more gifts: Diletta and Letizia. With them, we thank the Lord for leading us to Fede e Luce, and we pray that He will give us the strength to be, always—especially in difficulty—witnesses to His love. Thank you, Roberto. Thank you, Fede e Luce.
Beniamino Carretta, Gabriele Carboni
Please Publish the Addresses
I have been a subscriber for several years and follow your work closely. The magazine is excellent and engaging—I often read it straight through without stopping.
I find especially valuable the experiences shared by friends who live with disability firsthand. These accounts are tremendously helpful for those facing similar struggles that can sometimes feel overwhelming—especially when you lack the chance to talk with others who understand.
Through your magazine, you get advice that others simply can't provide.
I've read about positive experiences at day centers for young people with disabilities, and that prompted a reflection: many families with a disabled child—whether mildly or severely disabled—don't have adequate information about activity centers available in their own area.
It would be genuinely useful—and I hope feasible for you—if you could publish, region by region, a list of these centers with their addresses and phone numbers, whether public or private. A directory of disability resource centers would also be invaluable.
I am deeply grateful for all you already do, and I send you my warm regards.
Lucia Guglietta
Your suggestion is excellent and we will work to realize it. For now, we are publishing addresses for several documentation centers.
We thank Annamaria Tanci and her son Giulio (pictured) for the names they sent us to help spread Ombre e Luci.