Not everyone's experience will be the same, but the letters we received from siblings of disabled people surprised and moved us. Here are some of the recurring questions on this subject:
- Why do I always have to be better?
- They say we're all equal… but I'm ashamed to go out with him… and I'm ashamed of being ashamed
- Why do I have to bring my disabled sister to my friends' parties?
- Oh, how I'd love a vacation without her!
- When my parents die, will I have to take care of him?
- Every time I mention the idea of moving out on my own, my parents lose it. They keep saying: but what about your brother?
What follows are some of the testimonies we've collected.
Together, With Plenty of Laughter
Sofia, 17, older sister of Gianluca
Our family is always quite a sight: we present ourselves as a loud and motley crew of people, trailed at a safe distance by a large German shepherd and led by a brave and valiant commander. His mission in life is to shout and laugh for the good of the world. His name is Gianluca. Gianluca, or Uaua as he prefers to be called, is my younger brother. He lives with a disability that shapes both his life and ours. Our relationship has always been fantastic, though more protective than purely sibling-like. I laugh and joke with him, sure, but we also fight sometimes or comfort each other. I have to admit, though, our favorite pastime is burping contests. And because there's strength in numbers, together we've even managed to beat the unbeatable Shrek!
On My Side
Francesca, 10, his younger sister
"It's wonderful to have a brother like Gianluca!" Francesca says of her disabled brother, who is four years older than her. "He's the only one who lets me watch TV in peace, even though he's a bit annoying because he's such a perfectionist and always wants Mom to hold the remote. He's kind because when Mom scolds me, he throws a fit to defend me. Sometimes he even makes me look good in front of my friends because he can burp in a way they really like.
He's taught us a lot, especially to respect people who are different. If it weren't for him, I never would have accepted that Livia, a girl with Down syndrome, could be my friend. When she was made fun of at a party, I cried because they didn't respect her.
In a way, I know he's my older brother, but I feel older than him because he can't do all the things I can do."
(edited by Valeria Mastroiacovo)
The More We Distance Difference, the More It Frightens Us
Francesca, 36, sister of Giulia
It all started twenty-four years ago, when my brother and I waited with nervous excitement for our sister to be born. Right away, our father told us the baby had an extra chromosome. He explained what was happening in his own simple, honest way.
Our father is very good at explaining things to children. He has a gift for making even complicated things clear and simple.
Knowing immediately made a real difference for us. It let us face reality directly, helped us stand beside our parents, and let us participate in and support their initial confusion as much as we could.
I remember with such emotion Giulia's early milestones—those small, enormous steps that meant even more for her. "She follows the ball with her eyes. She rolls over. She stands up. She takes a few wobbly steps." Even now, we laugh remembering how little Giulia used to say our names, and when asked, "Who's your family?" she'd answer: "Daddy (always first!) Mommmmm (with that classic Neapolitan accent) Jejé (my brother Gigi), Checcà (that's me), and Lillillà (her, Giulia, always pronounced with extra emphasis!)."
Looking back over these twenty-four years, so many memories come to mind. For me, Giulia has been a truly special younger sister.
There's almost twelve years between us. From when I was small, I'd take her around with my friends—a bit like a mascot. She was always close to my friends and whenever she could, she'd join in our parties and celebrations. Of course, I also wanted my own spaces without "the siblings," like every girl does.
Time passed. Today Giulia is grown, a young woman with her own interests. She's built, with effort and dedication, her own circle of friends. After secondary school, though, a difficult moment came. The old structure was gone—school, classmates, teachers—and it seemed hard to find spaces to socialize outside the family where she could form real friendships. Fortunately, opportunities slowly opened up. First came a group of kids from the parish who welcomed her fully into their pizza nights, parties, and gatherings.
Later, my sister enrolled in a clown therapy training course. It wasn't just an engaging learning experience—it gave her a place in a clown association that still operates in the Naples area. She attends meetings, takes part in training seminars, and works alongside other clowns during their visits to hospital children. A particularly important role in Giulia's life has been played by the Italian Association of People with Down Syndrome in Rome. Through their youth club and leisure agency, she became part of a group of young people with Down syndrome. She could share her experience with them, have real friendships, take part in vacations and weekends together, and calmly navigate her own and others' differences.
Today Giulia comes to Rome once a week to see her friends at the association. She sends them emails, has invited them to Naples several times, and never misses a vacation with them. I knew the association because I'd worked with them on various projects. I had a decisive role in bringing my sister and my parents into the fold and involving them in their activities. Sometimes, as her sister, my role has been to push my family and Giulia toward opportunities I learned about that I thought could matter for her.
Giulia is a major reference point for me. She has taught me in real life that the precious things in living are the small things and daily victories. Most of all, she's shown me that the more we distance difference from ourselves, the more it frightens us. I hope to hold these lessons always in my mind and pass them with love to my daughters. Thank you, Giulia.
Francesca Sauro
How I Grew Up—By Necessity
A., 61, sister of R.
I'm 61, married for 40 years, with three sons. My husband, Franco, left us in 2001 from cancer.
I was left alone with the boys—they were 20, 24, and 28 then. There's no point saying that losing Franco's support turned my world upside down. I didn't know who to turn to for all the problems the boys threw at me day after day.
My elderly mother and my older sister—who has suffered from schizophrenia since age 20—live in an adjoining apartment.
I was alone, responsible for five people. To protect them, care for them, serve them, comfort them, push them forward.
How do you live peacefully when the task in front of you—one you never chose—is simply too hard and too heavy?
I was hardened by this when I was barely fifteen, when my only sister began to fall ill. These were times when mental illness wasn't treated except with hospitalizations and shock therapies. My parents did the best they could, but they were overwhelmed by the shame of the era. It was a disease people didn't talk about. And there were no decent places to send your daughter.
Instantly—she was my sister—I felt I should step in where they couldn't. I remember a doctor at a clinic where she'd been admitted. When I arrived alone asking for news—I was seventeen!—he said: "What are you doing here? I can't tell you anything."
So I became "grown up" fast. And fortunately Franco came into my life—my beloved "savior," my adored husband, the devoted father of my children.
With him, everything became easier. Even the hardest moments felt more peaceful. Franco seemed sent from above to dry our tears and, above all, to calm the storm we seemed trapped in. With him beside me, life started over: the children—as they do—brought chaos and joy; work brought satisfaction. Happy in our marriage, anchored from the start in faith in God's care, we could stand beside my sister's illness. Surrounded by this joy, she let herself be led toward improvement, helped also by new medicines.
Then Franco became ill. He was immediately aware of how grave it was, and until the end he wanted to prepare for death with us. To me, it felt like falling back into an abyss. I listened to his peaceful words with some skepticism. I trusted him and tried to believe in the beautiful things he spoke about—things that became his legacy. He left us, yes. But we weren't left alone. He walks with us still, helping us live despite everything, with hope and faith in God that were the foundation of his life.
A. L.
Without Knowing It, She Led Me to the Heart of the Gospel
Sister Chiara, 49, sister of Maria
In our home, Mother was always the heart of the family. At some point in her life, she left teaching pedagogy—which she loved deeply—to dedicate herself to us. Along with our father, with an attentive eye and great love, she guided each of us through growing up and progress. I'm the youngest of five daughters (the first died a few months after birth, as often happened then). I was born three years after Maria, my disabled sister.
To tell the truth, I've never gotten comfortable calling her that. I've always struggled to place Maria in that category, because deep inside, I've always felt her on the border between normalcy and disability. Perhaps because I never accepted her disability. Or perhaps because I see in her a heart and courage I don't have.
As a child, I remember her physical differences stirred questions I couldn't answer: Why is she like this? Why is she different from other children? Why is she in our family? Later the question changed: Why is she like that and not me?
Only a few years ago, my parents told me about the moment she was born. Father suggested calling her Maria—to entrust her to the Virgin Mary and welcome her into our family without reservation.
I wasn't there for Maria's earliest years. I believe those were the hardest for my parents. The doctors said Maria would live a week. She was born with macrocephaly and webbed fingers and toes on both hands and feet. In those painful years, walking through deep darkness in a great trial that demanded more faith, love, intelligence, and courage than they thought they had, they received unexpected answers. The Cottolengo would say: "To those who trust extraordinarily, God provides extraordinarily." They grew in a wisdom of life they passed on to us every day.
Maria's life turned out almost as full as ours. After her first years in a special school—living in a large city like Milan helped somewhat, offering more possibilities for disabled people, though the time for mainstream school inclusion hadn't arrived yet—for us sisters, it was natural that she be in the Scouts like us. The Malgré-Tout group, which welcomed disabled kids, had just started then. It was obvious she'd work toward employment like everyone else, after taking an evening ceramics course that suited her talents. She began to build her own circle of friends. When Faith and Light came along, her friendships grew even more.
All this normalcy was possible because my parents, despite everything, kept making choices that fostered her independence. Today Maria lives with our aging mother (Father died two years ago at ninety-five), works, and in our parish is an active community member. She serves on the pastoral council.
I think Maria's presence in my life is a grace I'm not yet fully aware of. Without knowing it, she led me to the heart of the Gospel: "Whatever you did for the least of these brothers and sisters of mine, you did for me" (Matthew 25:40). She invites me never to forget the smallest, to stand with them and stay at their side, because the kingdom of heaven belongs to them.
Twenty-six years ago, when I entered the monastery, leaving behind the beginnings of a psychology career and the chance to help others, I had understood that Jesus was calling me to follow him in a way through which I could reach not just someone, but everyone. Father gave me a holy card on which he wrote: "We are near you in thanking the Lord and we wish you a path of joy with humble and generous courage." Those words remind me of my parents' faith, the family climate in which we grew up.
In our charism—I am a contemplative nun in the Cottolengo tradition—and in our spirituality, I found this love for the smallest. The deep breath I learned in my family. Perhaps someone will rightfully wonder: but how can you live this love in enclosure? Jesus told us: "The poor you will always have with you" (Mark 14:7). A monastic community, through prayer of praise and intercession, mysteriously reaches everyone. It carries and makes its own the sufferings and joys, the anxieties and hopes of every sister and brother. Yet within the community too, there are always the smallest—those who by age, illness, or grace have become so. For "unless you become like little children, you will never enter the kingdom of heaven" (Matthew 18:3). Bernanos writes in The Dialogues of the Carmelites: "Once we leave childhood behind, we must suffer long to return to it."
Life is a great surprise. Each of us carries inside the resources to grow, to be happy, to leave something beautiful for others—even the smallest among us. From life's trials, accepted completely, flow rivers of hope for us and for others. "A brother helped by his brother is like a fortified city" (Proverbs 18:19, LXX). My parents carried this trial together—welcoming a disabled daughter into their lives—and with the strength of their love, they involved us in this adventure. They made it possible for Maria to be a happy person.
So to conclude: Am I responsible for my sister Maria? I would say rather that Maria is responsible for who I am today. To her, to her presence in our family and therefore in my life, I owe much of my long path of inner growth. Thank you, Maria.
Sister Maria Chiara Goffi
Did I Really Have a Choice?
Anne, sister of Natalie
My sister Natalie and I were born prematurely on the evening of August 14, thirty-nine years ago. I was placed in an incubator. She wasn't. Since then she's lived with severe intellectual disability. I couldn't help but feel responsible for her in all the small daily things, since we shared so many activities. In kindergarten, I defended her from those who mocked her. I protected her greatly, took her under my wing. Soon I developed a special attentiveness to her and to others who aren't like me.
Our mother's illness and death, when we were only sixteen, only deepened this. I was there, for example, when Natalie had her first period.
Later, Father—fortunately he found a group home for my sister—never stopped, very naturally, sharing his worries and concerns about organizing her life and the choices to make for her. So when two years ago we all gathered with Father, brothers, and sisters to plan Natalie's future, it seemed natural that I take responsibility for her. Normal: "the twins" had always gone forward together. From the first moment, I felt I had no choice. It was simply obvious that's how it had to be. Life and what happens in it make it so you can't or won't ask questions. And yet.
When the day comes that you want—or can—face the problem, we siblings have the right to question everything again, to look at the situation afresh, to try to find other solutions. This requires real letting go: recognizing your own limits and accepting help. We aren't indispensable. Others can do things just as well as us, if not better. We're allowed to find this responsibility too heavy. We have the right to rebel, to cry out. As Marie-Odile Réthoré, medical director of the Jérôme Lejeune Institute, says: "Brothers and sisters, speak, speak, speak. Don't carry in your hearts problems that have no answers just because no one's ever asked them."
As for me, I slowly became aware—though without real rebellion—that I carried a weight too heavy and for too long. For instance, when my first children were born, I realized I'd felt responsible for someone younger than me for a long time. My childhood had been taken from me. Fortunately, life gave me a real push when I met the man who would become my husband. Love for him convinced me to follow him and leave home, despite Natalie's sadness: "You're abandoning me! You're lucky, you can get married and have children." Love and life made her blame me.
Recently I decided to talk about it simply with my brothers and sisters. For the first time, I didn't spend vacation with my sister. Natalie was hosted by one of my brothers. Also, for the past few months, I've been thinking about entrusting her guardianship to a specialized institution. It's not abandonment but a new way of living my responsibility and being a sister. I've become convinced that what I lived as a burden can be something else. There's no fate here. We have to equip ourselves.
There is joy in feeling responsible: the joy of accompanying someone you love and care for, of seeing them grow and mature, of spending good moments on vacation together, of watching my husband and children get along wonderfully with her. For her part, Natalie has made me grow a lot. She's helped me develop a deep capacity for listening, for welcoming, for attention to others. And I'm not alone in this. It's remarkable how siblings of disabled people recognize each other instantly at a gathering or wedding—by our ability to get to what matters, to reach the other person.
This responsibility makes me feel coherent in my life. I couldn't go to Mass on Sunday and ignore my sister. There may be some residue of guilt in me—I realize there's still work to do for my heart to be at peace—but I see it more as a double choice. It's like deciding to organize a Faith and Light day in our city. It's a lot of work, but also great joy.
Anne De Verniette (O&L no. 166)
Now That I'm About to Become a Mother
Maria Paola, 34, sister of Daniele
My little brother is named Daniele. He has autism, which showed up around age three.
Daniele is an extremely sensitive boy—kind, attentive to everyone and everything around him, even if he hides behind an appearance of distraction. He loves colors, loves to write and draw, loves sweets and ice cream and playing with words. His real passion, his obsession, is time itself: the days of the week, studying the calendar, which has always been his favorite game (because he always wins there!). The passing of time gives him certainty and safety but also creates his greatest daily anxiety. He doesn't just need to know what he'll do today—he has to plan tomorrow and the day after and the day after that. But I think many of us are like that too. He just doesn't hide it.
His world, since I was small, has always fascinated me: so complex and imperceptible on one hand, so simple, spontaneous, without barriers and unnecessary constructs we often build for ourselves on the other. I remember coming home exhausted from my frantic routine and finding him in his room bent over his drawing as if nothing could touch him. It gave me an immense sense of peace and calm. I'd stop too and wonder whether all that daily rush even made sense. Then everything would start again and it was right that way.
Daniele, in his innocence and tenderness, is like an eternal child. As his older sister, I always want to treat him that way—protect him from everything and everyone I don't feel close to. That's probably my own limit. Now that I'm about to become a mother, who knows if I'll be just as anxious with my own child and how my relationship with my brother will change and grow. The truth is that even he, despite showing strong need for independence these days, likes to be cuddled and to be the center of attention with Mom, Dad, and his sisters. I hope we can help him understand that these "new lives" won't change the love we feel for him and maybe they'll be a chance for him to grow and discover the joy of being an uncle. Daniele is this and much more. He's always a new joy and discovery because his being special is a gift and a richness every single day.
Maria Paola Tosti
Brothers for Life
Imma, 20, sister of Pasquale
My brother Pasquale is 25. At four months old, meningitis struck him and left him with intellectual disability. I remember when I was four, my mother telling me about Pasquale, about his illness, how it had progressed, the therapies he went through every single day.
I was just a child, but even as children you feel suffering, often helpless to do anything. Well, one thing I did: pushed by my parents, I became the classic good girl, almost to balance out the injustice he'd suffered. I think being involved and informed lets us siblings face disability's external difficulties more calmly. Despite my parents' best intentions, my childhood was "stolen" from me by premature responsibility. But what they were doing in good faith was trying to be as normal as possible.
Pasquale has never spent a day in an institution. As a result, he's independent: he uses computers very well, knows all the new technology, has an extraordinary memory—he knows every single word of Ramazzotti's songs. Too bad he sings them every day, almost at the top of his lungs, at home. Living with someone who has a disability isn't impossible. It's actually quite fun—it's like always dealing with a child. I've always accepted my brother, and that's because of my parents. Even though I grew up with my grandparents because of their work with Pasquale (school, speech therapy, music therapy, horseback riding, other therapies), my thoughts went to him. In the evenings we'd find ourselves sharing a room and toys. We were never separated.
Because of his openness, Pasquale can't help but say what he feels, what he experiences. He's very affectionate and sociable. Sometimes it's hard for me to accept this because it can embarrass or bother people around him. But then I see the joy and the smile on his face and I let go. My emotional world, my personality, my life priorities have been, and still are, shaped in a radical and profound way by my brother's presence.
Not by chance, I take part with my family in the Faith and Light community, where my father holds a leadership role and I feel like a sister to all the young people. I'm the only sister present in the community, and maybe they see me that way too. In life I'm studying to be a social worker because my dream has always been to work with these young people. I know that Pasquale, one of the most important people in my life, will always have difficulties that will keep him from managing completely on his own. He'll always need someone to help and guide him. I'm happy to be that person because we're siblings for life.
Imma
What It Costs to Separate
Giorgia, 33, sister of Corrado
My story is the story of many other sisters who, from childhood, had to step back, make themselves "small" so as not to burden our parents, had to endure the invasiveness and misunderstanding of disability in our own home, in our own room, in a mother's embraces, at school, with friends.
I grew and moved through all of this, struggling to find meaning in difference, living with an injustice that haunted me for so long. But then, at some point, even if you don't understand the "why," you accept that it is this way and move on. Growing up, you realize that very few things in life really matter. And that brother who was so "invasive" and inconvenient becomes your own strength, your better part. You feel love for him beyond any incomprehension.
You feel you owe him everything. To be present, to care for him, to protect him, to be an extension of him. And as you do, he opens a world of love to you, becomes the gateway to life's small things that make God's existence vast. The difficult moment comes when you have to separate from all this—from this responsibility you feel and that sometimes goes beyond what you should bear.
It's the moment when we siblings have to "go," think about our own lives and cut the cord. I think there's one thing that connects all of us: guilt. It's a slow, constant gnawing from childhood. Guilt for having had more, for being able to have a normal life. And the fear: if you leave, "what will they do?!" Each of us, in our own way, feels we have to make amends, that we owe those who gave us life part of our freedom because theirs was taken away.
And it happens that while you're thinking about how your life will go, how you'll become independent, how you'll build your own family, you feel fear of living it—as if you're "stealing" something you can't have. That's not quite how I felt, but I always thought my place had to be beside my mother, beside my brother, that without me it would be too hard. I tried to delay separation as long as I could.
Today I have a life of my own. I've been living alone for a few years now, and now I live in another city. I think I managed because I had enough love for myself to feel that dedicating myself to my life couldn't be wrong. But still, every now and then, I have to brainwash myself to believe it. Still, today, I have to force myself not to feel guilty when I'm not there, when my mother has to rely only on her own strength. We want to give our souls to these parents, to these siblings who, however hard, have made life special for us. And that I can say above all else. Unfortunately or fortunately, you never completely cut that cord—maybe out of guilt! but above all out of love.
Giorgia Fontani
Could I Perhaps Do More for Sabina and for Il Carro?
Max, 46, brother of Sabina
Max and his wife have two young children he follows patiently ("In the end it's good I had them later because I wouldn't have had the same spirit years ago. I'm convinced now that children need personal attention"). His sister Sabina is a year and a half younger than him. She has severe sensory and intellectual disabilities and lived with their mother until fifteen years ago.
Though it's clearly difficult for him to talk about himself, with genuine warmth he tells us how he experiences responsibility for his sister and how the community where he lives offers connection with her rather than distance.
"I don't remember specific moments when I felt burdened by having a sister like Sabina. I lived in a building full of cousins and friends. I'd spend my afternoons outside with them, playing and talking on the street.
My parents always believed it was important for them to personally attend to each of us children's needs, including Sabina's. This meant I didn't experience her presence as a particular difficulty. Of course, maybe I've forgotten or repressed something. I followed her school situation: I knew which centers she went to and sometimes I was asked to pick her up, but always only in extreme cases when Mom or Dad couldn't manage otherwise.
When Father died, Mother took charge of the family and continued to personally manage Sabina's needs.
About fifteen years ago, the first group from the Il Carro community proposed taking in Sabina, along with two other young people. Mother was beginning to get older but wasn't yet thinking of a different arrangement than home. She was uncertain for a while. She even talked with me about it. It felt to her like abandonment. Then, getting to know the people she'd be entrusted to and the arrangement of care rotating every other week, she decided to take this big step.
When it came time to manage my grandmother's inheritance and knowing her wishes to help Sabina's needs, the family—my father's brothers and sisters—set up a foundation to manage these assets and put them to use by Il Carro. We worked quite a bit to weigh all aspects of a very complex situation. We needed to find a way to continue overseeing these assets while at the same time protecting the association, which eventually created two welcoming communities for about sixteen disabled adults.
For a long time, I kept away from the community's life, even though Mother encouraged me to come to the various gatherings. I began to get closer through the Christmas lunches the community organized with all the residents' families. For many years, those were the best part of Christmas for me—a holiday I've always found hard to enjoy. Now that for some time there hasn't been a space large enough to welcome us all, I truly miss them. I really hope this tradition renews soon.
Slowly, piece by piece, I began to take part in member meetings and the occasions the community offered to gather together—like olive picking. Before I had children, I participated in the fundraising group. After that, it became harder, and I often find myself wondering if I couldn't do more for Sabina and for Il Carro.
I don't think there's a better place for her. She's with people who love her, respect her, and know her better than I probably do. She's at peace, and it's not hard to tell. When our father became ill and then died, Sabina was really very angry and started pinching hard those who cared for her—though you wouldn't think it, she has ways of making her mood clear. Now her pinches are more playful, provocative, maybe a way of connecting. She always reserves a couple for me when I see her."
(edited by Cristina Tersigni), 2009