Six mothers of young people with severe disabilities gathered at Mariangela's home to listen to and discuss a radio broadcast from ROMA 3131. The speaker was Irma, another mother like themselves, whose words—born of desperation and bitterness—moved them deeply. Below are excerpts from Irma's broadcast and the mothers' responses.
Irma: When I hear people say "these young people give us so much," it makes me sick. That phrase is meaningless. It's empty. It fills your mouth but gives you nothing.
At a conference, I even heard: "The disabled make society human again, in a world that has lost all humanity."
But then I ask: Why? Why are we mothers eternally alone? And when we die—and we die first, because we're exhausted, broken—they end up in institutions. So let's say it once and for all: it's not true that we love these people. It's not true that we accept them. It's not true that we want them near our children. That's all lies. The reality is completely different. I'm a coward. I should have killed myself and my daughter rather than accept this. Courage to live? No. I need courage to die.
The support teachers always have the same excuse: "We weren't trained to work with the disabled." But I ask: Was I trained when my daughter was born? Was my other daughter trained to spend her whole life with a sister like this, sacrificing her own future? Were we trained? No. And what does medicine do to prevent these things? My daughter's disability came from Rh incompatibility. When I was pregnant, did the doctors tell me anything? Did they warn me? No.
Olga: Irma spoke from the heart. She told the truth about her experience. It bothered her when she heard that disabled young people give much to society. And honestly, if someone says that without doing anything for anyone, I get angry too. I can't stand people who pontificate when they know nothing, who've never lived what we live. But if a group of young people who spent twelve days at a Fede e Luce camp comes back exhausted and tells us "they gave us so much," then I believe it. It doesn't bother me at all.
Here's another point: "Do they give much to society?" They could. But in practice, they don't—because our society is broken, and we know it. In a broken society, our young people give nothing. They could give, but only if society were able to receive what they have to offer. The gifts our young people have are very hard to accept. It's very hard to understand what their gifts are. You have to do a lot of inner work—spiritual work, Christian work, human work, whatever you want to call it. You have to grow a great deal to understand what gifts they can give us. The outside world, society in general, hasn't done that inner work. So it doesn't see our young people as gifts. Sometimes it sees them as a way to make a living. That's the reality. Occasionally, among all these people trying to earn a living, you meet a saint. There are quite a few saints in this field: one in ten, one in a hundred. I know many personally. People who have practically become saints. But it takes a long time.
Luisa: After everything Olga said, I have little to add. She spoke beautifully, brilliantly. She put her finger on the wound. The woman on the radio is sincere. But what bothers me is when I see those television programs with so-called experts who aren't experts at all. The real truths come from parents and from people living inside the problem. Those friends who have truly taken these situations to heart—they're the authentic ones.
"The gifts our young people have are very hard to accept. You have to do a lot of inner work—spiritual, Christian, human—to understand what gifts they can give us."
Mariangela: Beyond the sincerity, did you agree with everything she said?
Luisa: I didn't agree with the negative parts. I've never accepted those. Thoughts like that may cross your mind, but certain things must be rejected.
Rosa: When Irma says our children actually give nothing, I disagree. It's hard to understand, hard to see right away. I only began to understand it when I discovered Fede e Luce and all their friends.
Mariangela: Did you understand that right away or little by little?
Rosa: Little by little.
Mariangela: Before you went to Fede e Luce, how did you see Davide?
Rosa: I saw him as he might have been. The way I wanted him to be.
Mariangela: You had such a strong wish to see him different.
Rosa: I was completely... I thought with physical therapy, with eye surgery... he would become normal. Just illusions.
Mariangela: Illusions and disappointments everywhere. How old was Davide when you went to your first Fede e Luce camp?
"The doctors gave me no help at all. In fact, they went against my instincts. If they had responded to what I was asking, maybe they could have helped more."
Rosa: Eleven years old. I met Rita first, and through her I found Fede e Luce. It was there that I learned to see Davide differently. To see what my son could give me—to accept him as he was and to receive what he had to offer.
Nadia: Everything that woman on the radio said is absolutely true for me. Maybe my situation was even worse. But I tried to keep going, to do everything I could for my children. Life destroys you slowly, and honestly, they give you nothing. You accept them, you love them, you care for them, you do everything for them—anything. But there's no payoff. It's an enormous, enormous sacrifice. Some nights you go to bed and realize you never even sat down all day.
Rita: The words from that mother we heard were filled with tremendous bitterness—the bitterness that comes when there's so much rage inside. I've felt that rage too. I wanted to consume the whole world. But why does this woman suffer so much? I think it's because she's alone. And that loneliness has bred rage against everyone around her. But what did Pablo give me? He made me turn inward. He taught me to see others. He taught me to understand another person by looking at their face when they're suffering. He showed me my own weaknesses, my own limits. And because of that, when I look at another person—as long as they're not attacking me—I can be understanding. I can wonder what's behind their words, their behavior. That's the greatest thing Pablo has given me.
Rosa: The truth is, families are completely alone. There's no support from doctors or anyone else. Practically speaking, we're alone in every place we're forced to go. You don't know certain things, and you waste so much time. You could do so much more. Those early years are precious—that's when rehabilitation therapies work best. Later it's too late, and the damage stays with our children, our families, society itself.
Nadia: You get nothing from the family. They come for an hour, tell you what to do, and leave. But they don't know that some nights one of your children can't breathe, or they're having seizures. Then in the morning you have to be on your feet, washing them, feeding them. And the sacrifice of being stuck at home—never getting out, never finding anyone willing to help because everyone's always busy. I spent eight months in the hospital with my son, completely alone, and no one ever said, "Stay home today." I was twenty years old! So I don't want anyone telling me what to do with them now. "Take them here, take them there." I don't want advice. I won't accept it anymore.
"The family is completely alone. There's no support from doctors or anyone else. We're alone in every place we're forced to go."
Olga: It's incredible what we've done—some of us for sixteen years, some for twenty-seven. When I look back, I think: How did we do it? I don't know. I survived all of it. What Nadia said brought it all back. I prefer not to remember the early years too clearly. They were truly a tragedy. I never slept. My nerves were shattered. I studied how to kill myself, how to kill Sabina first and then myself. I was on the fifth floor. I thought: If I jump headfirst, maybe I won't die right away—maybe I'll just end up disabled too. I didn't do it. I practically measured it out, thought about how long it would take to die. "Maybe I'll take some aspirin—will a hundred be enough? What if the dose doesn't work?" I thought about the gas oven: "Maybe some air escapes under the door and it doesn't work." And I had a normal son who was a year and a half older. I thought: What if he comes home and finds me broken, covered in blood? I couldn't do that to that boy. So I didn't do it. Now I've gotten past all that, and I prefer not to remember.
Luisa: The loneliness is immense. The only thing I want to add is that the doctors gave me no help at all. In fact, they went against my instincts in a way that seemed obsessive. I would point out things I was seeing in my daughter, and they would tell me to be patient, to wait. They wouldn't listen. I don't think that helped Elena's progress. If they had responded to what I was asking, maybe they could have helped more. They could have known her case better, found the right therapies—physical and psychological. And there should have been support for the parents, because that was absolutely necessary.
"After those first years of tragedy and total darkness, at some point I discovered that others were near me—but I couldn't see them."
Rita: What I want to say is that I felt betrayed by God. So I blamed myself, as if I wasn't equal to the situation. But I did everything for Pablo. I sang while I cried. I made sure he loved life, because he had to love it—it's beautiful. I did everything to make others accept him. I accepted him as he was, but there was no one around me. My parents love me, I know they do, but they didn't do much. My mother just called sometimes.
Mariangela: After those first years of tragedy and total darkness, at some point I discovered that others were near me—but I couldn't see them. Our eyes were clouded. Others were there, ready, but they didn't know how to take the steps necessary to knock on the door, come in, find a way to reach us. It's true—it's not easy to enter a family with these situations. Young mothers especially tend to say, "Everything's fine, everything's fine." That's an answer we need to know how to read.
Rita: Yet now that I think about it, there was one mother—younger than me. We lived nine years, me on one floor, her on the one above. She would come down with her daughter in her arms. I ignored her. She'd come in and stand by the window. I ignored her for a long time, but she kept coming. She just kept coming, and she became my closest friend. It was beautiful. When I got pregnant with Daniele—three months along—I also wanted to turn on the gas and end it all. And you know what stopped me? It wasn't right for me to take Pablo's life. I wasn't the most important thing. He was there. Clearly he was meant to be. It wasn't such a profound thought, but I felt I couldn't do it. I thought: Who are you to take another person's life? And she, my friend, was always there.
Mariangela: So you agree our eyes are darkened?
Rita: Yes, I've agreed for a long time.
Mariangela: I've felt this deeply. I had brothers, sisters, friends all around me. But I couldn't see them, couldn't feel them. I couldn't see or feel my husband either, or my son.
Olga: We parents are in a very particular position because all the weight falls on us. From the beginning we're unprepared—I mean, I'm prepared now, after twenty-seven years, but you married at twenty. That's too young to carry such a massive responsibility. It's absurd! How can you ask a girl of twenty-two or twenty-three to take on something like that? So I think many parents are truly destroyed by this abnormal weight. Many marriages are ruined. Many men have run away from it, leaving their wives alone. We parents should have a real choice: to keep them at home, if we can, with good social support—maybe someone in the house full-time in those early years, until they go to school or a day center. But we don't have that.
Mariangela: I want to pause here and look ahead. What happens today to mothers who find themselves with a disabled child in those early years? Because it's not true that they aren't born anymore. Nothing is more grave, and no one is more alone, than a mother and father who are told their child is disabled. And then they're left alone. Everyone is afraid to ring the doorbell and say, "I'm here." Out of respect, they say. I won't say more—respect covers a thousand other feelings. They say: out of respect, it's better not to inquire. But we should at least ask those inside: "Is it better this way? Is it right for us to stay outside your door?" In my view, this gathering—and I thank you for saying what you've said—should be a launching pad for new initiatives. A parent education program. Contacts with hospitals. Dance therapy for parents. Whatever we can offer. But remember: one of our core purposes is this. Our duty now is to "enter," to draw close, to share with people who, like us, are still being struck by this experience and living in dramatic isolation. Families are completely alone. I could argue about this for hours, because I'm convinced that they're not just alone at the beginning, at the moment of diagnosis—and maybe something is being done there—but it's our responsibility to push for these families to be connected with organizations that can help, since doctors and nurses can usually do very little. It's our job to make those connections. I know it's hard for us to talk with parents of newborns with disabilities, because we tend to share what we're living now, not what we lived through. That's a challenge we need to face.
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