First Class and Second Class?
I don't mean this as criticism of you, but I've noticed that people with intellectual disabilities seem to get more coverage than those who have cognitive ability but cannot move or speak. My daughter is 36. A severe lack of oxygen at birth left her with spastic-dystonic tetraparesis. She cannot walk. She cannot help with anything around the house, large or small, because she cannot use her hands. But she understands every word, every whisper. She expresses approval or disapproval with various sounds—no words, no real speech. I see so many articles in your magazine about Down syndrome and people with intellectual disabilities, but very few about people like my daughter. What advice exists for her autonomy? This isn't meant as criticism, only as something I've noticed, and it weighs on me. Does a hierarchy exist even among the disabled? Forgive the outburst, and thank you anyway for all you do.
Gabriella Grossi
Thank you for this fair point. We will remember it and try to write about and help people like your daughter. Believe us, this is not about first and second class. Years ago we devoted entire issues to people with cerebral palsy, but it's true we haven't done so recently. We apologize—and we look forward to hearing from you.
How Far We've Come in This Boat
Two days ago I received "our" book (In the Same Boat, editor's note). I thank you endlessly. You sent me tumbling back through time in the most beautiful way. Reading it again, feelings I thought were asleep stirred awake. I could see how far we've traveled together, holding each other up. How many times, when my spirits sank, the arrival of Ombre e Luci lifted me—made me feel connected to everyone. The book's cover is beautiful, and so is the typeface. The stories hold pain, but they carry a powerful message of hope born from sharing, understanding, and the courage to love. I'm certain the message will reach people. I'll do everything I can to make it known and bought. Is it in all bookstores? Or are there specific ones?
Rita Ozzimo
I'm Reading It Now
I want to express my gratitude for the book In the Same Boat, published recently. I read it with admiration and also with the feeling of being so small before such great acts of love. Here—in the stories of so many parents and their children—I find a living witness to the Resurrection of Jesus and the power of his love. The Resurrection truly celebrates life over death and over every force that diminishes existence. It is also testimony that every limit, every disability, every suffering is taken up and transformed.
May the Lord give you his peace and the joy of being joy for others.
Fra Carlo
That Very Silent Minority
I am the mother of Flaminia, a 24-year-old with cerebral palsy, and I want to respond to Maria Rosa Oneto's letter, published in issue #1 of 2002.
I believe Ombre e Luci should absolutely continue—but, and here I agree with the reader from Rapallo, it should work harder to give voice to our needs, which must adapt to a world that is always changing. There is no doubt that the difficulties we face today, and our hopes, are very different from those of twenty years ago, when the magazine published its first issue. That said, I do want to object to Maria Rosa Oneto: Ombre e Luci defines itself as a Christian magazine, so it seems entirely right that it speaks about faith and spirituality.
I was shocked when I read: "In a time when most of us have, or aspire to, a dignified job and equal, participatory social integration…" As I reflected on those words, I realized the letter writer doesn't understand the reality of the disability that Ombre e Luci primarily addresses. I'm talking about that very silent minority who don't have and never will have "a dignified job," and who objectively cannot aspire to "participatory integration." It seems Maria Rosa Oneto doesn't know that this humanity exists too. They can count only on fair laws that protect their rights and improve their quality of life, and on the selfless affection of those with the courage to understand and offer friendship to people who struggle even to express their boundless need for love.
It's sad for us who live this every day to realize that we aren't considered—even by those who should be most sensitive, who know the problems of disability well, as this letter implies with its phrase "most of us."
Paola Pulieri
Silvia's House: Our Dream
We want to thank all those friends who, sharing their stories through this magazine, help us accept and live with the daily anxieties and fears, and who also show us the joy and immeasurable love in the heart of each of us. A friend recently gave us a book just published called "In the Same Boat," which collects the powerful testimonies of parents with special children. We read it with curiosity and wonder. As we turned those pages, we realized that each story was also our own, and together they wrapped us in a embrace of authentic feeling and connection. In those letters is the attempt to make us face the problem of "what happens after we're gone"—perhaps the most painful question for parents like us, something we've asked ourselves many times.
Most of us alone cannot free ourselves from our own fears. But if there were a network of friendship—a way to receive support from others and to give support in return—we could face questions of such weight with peace, knowing that our children's future depends on what we build for them now.
We are a couple in our fifties. Years ago, fate took from us our Silvia, our special daughter in every way. An summer that promised better health and a brighter future turned into a calvary of suffering that ended in tragedy.
It seemed everything was over, that our destiny was to drag ourselves through dust to the end of our days. Then we thought of our little Silvia, of the dream that "after us" there would be a family to hold her and love her with the same tenderness. We let her guide us, let what she always put in our hearts guide us, and we decided to become adoptive parents. Nearly three years now, Giuseppina—our special child—has been with us. The beginning was hard, especially for Angela, because my work kept me away many hours. Now that I've retired, we share the load. Giuseppina has come to understand we love her, that she can count on us always. She's calmer now, tender and affectionate. We don't know what her future holds, but we will do everything to make it the best it can be. Our dream is to transform our home into "Silvia's House." We've begun, but the road ahead is long. What troubles us a little is that we haven't been able—whether from our own limits or from difficulties we'd face—to take in another special child, even temporarily, to help in emergencies. These few lines don't pretend to start a debate or offer advice. We simply want to say: in the great Fede e Luce family, we're here too.
Angela and Dario Orsanigo (Treviglio)
That Very Silent Minority
I am the mother of Flaminia, a 24-year-old with cerebral palsy, and I want to respond to Maria Rosa Oneto's letter, published in issue #1 of 2002.
I believe Ombre e Luci should absolutely continue—but, and here I agree with the reader from Rapallo, it should work harder to give voice to our needs, which must adapt to a world that is always changing. There is no doubt that the difficulties we face today, and our hopes, are very different from those of twenty years ago, when the magazine published its first issue. That said, I do want to object to Maria Rosa Oneto: Ombre e Luci defines itself as a "Christian magazine," so it seems entirely right that it speaks about faith and spirituality.
I was shocked when I read: "In a time when most of us have, or aspire to, equal, participatory social integration…" As I reflected on those words, I realized the letter writer doesn't understand the reality of the disability that Ombre e Luci primarily addresses. I'm talking about that very silent minority who don't have and never will have "a dignified job," and who objectively cannot aspire to "participatory integration." It seems Maria Rosa Oneto doesn't know that this humanity exists too. They can count only on fair laws that protect their rights and improve their quality of life, and on the selfless affection of those with the courage to understand and offer friendship to people who struggle even to express their boundless need for love.
It's sad for us who live this every day to realize that we aren't considered—even by those who should be most sensitive, who know the problems of disability well, as this letter implies with its phrase "most of us."
Paola Pulieri