Interview with Federico Girelli which appeared in the weekly magazine Grazia 21st April 2003, nr. 42. ME AND MY SISTER The story of Federico and of his intense, touching relationship with Maria Claudia, a person with Down’s syndrome. It is a story of complicity, weariness, old games and new ways to stay together. Because, says he, “siblings” means “all your life”. By Stefania Rosotti Photographs by Stefano De Luigi/Contrasto

Standing, with her arms wide open like in a dance: lonely, silent. Maria Claudia rocks herself in a rhythm that only she can feel: right, left, slowly. She moves her fingers in the air as if she were drawing something, something transparent. Almost never lifts up her head. And when she does, it is only to cast short, witty glances. What has she seen? What has she understood that we don’t? Maria Claudia has Down’s syndrome. She is 26, and she is so tiny that she does not look much older than a child. Federico is 31, good-looking, a steady university career before him, a dark-long-haired fiancée. He often smiles as he talks: the agitation of a boy and the elegance of a gentleman. Federico and Maria Claudia are brother and sister. And that is all. Because, as Federico says, there is no longer relationship than that: it begins when you’re not even born and ends when you end. Today they are at home, here in Rome, to be a little while with us. “Yesterday we had a glance at “Grazia”, just to let Claudia be familiar with your magazine,” says Federico. “I wanted to see if she likes it”. Does she? “Alright, she looked at it and then came back to take it. That means she got curious. Claudia knows perfectly well what she likes and what she doesn’t”. Claudia knows, but does not speak. “When she was very young she used to speak a few words which she lost later on,” explains Federico, “I remember that I and my other brother and sister used to write long letters to our grandparents: an accurate update about her new words, about all Claudia’s attainments”. The (older) siblings are Raffaella and Giovanni now living somewhere else. “It was Raffaella who explained Claudia’s condition to me. When she was born I was five: I did not understand what had happened. I saw my father nervous, my mother upset. I knew Claudia suffered from a heart disease, but I also knew she would have recovered after an operation”.
So? What was the problem? “The name of the problem was, generically, mental illness. An euphemism that, by the way, I could not understand. So then Raffaella (at ten or so) explained it to me. She said: ‘Remember Archimedes of the comic-strip? Every time he has an idea…wham!, a bulb glows on his head. Well, Claudia’s bulb turns on much much later’”. So this was mental illness…wonders of a siblings’ alliance. Prodigies of a solidarity made of shared fears, frights sedated with ‘logical explanations’ found in the comics. Federico’s story is made up of a thousand of these memories, moments to share the sorrow, the weariness (and also the responsibility) of helping Maria Claudia with her brothers and sister. “I remember whole afternoons spent holding paperboards with big coloured drawings on. Claudia had to learn to match objects and words which we distinctly pronounced one at a time. Then,” he adds laughing, “there was the ‘war path’”. What’s that? “Claudia had to learn to move her right arm and her left leg in synchrony (and vice versa). And to do so she had to sneak through the corridor: face to the floor, just like a marine of the storm troops. Therefore we played it all. Raffaella said: one, two, three, ready, go…And we launched an attack on our imaginary enemy”. The ‘war path’ is an intricate labyrinth of rooms and corridors of this big apartment. To reach Claudia, who has taken refuge in her room in the meantime, you do get lost. Is Claudia tired? Is she fed up with us? “No, not at all, she’s cheerful today, but sometimes she likes to be alone”. Claudia’s moods capture her brother’s attention: he can feel them and decode them. Now, for instance: it is difficult to say how he understood she is fine with our visit. Federico asks and then tenderly interprets his sister’s motionless answers. There is something symbiotic connecting them, something very close to the tie between a mother and her newborn baby: she knows what it can’t say. How can she? Silly question. And profane.
Claudia comes back to the living-room, sits by her brother but does not touch him. “Sometimes I would lie beside her. To breathe a bit of her silence, of her quietness. She doesn’t mind, but after a while she pushes me away,” says Federico while laughing. “Then, when she feels like it… There’s been a time (a bad time) when Claudia couldn’t sleep. At night she wandered awake through the house as if it were daylight. To make her sleep again I shared my bed with her. I slept next to the wall, while she finally relaxed and took all the space. The day after I woke up crumpled and I began to study. It was a weird and, in a way, weary time. In the day, when everyone was out, there was only Claudia, me and silence. I felt her presence in the other room and it was hard to concentrate. I had to take an exam, but I also had to take care of her. I had to isolate myself, but I couldn’t leave her alone. Priorities constantly turned upside down in my head. She would only calm down by means of compromise: a little studying, then we would make a cake together… A few pages more, then we would go and buy an ice-cream, or to the garden to wash my scooter, or to the park for a walk…”.
There is a lot of harmony and a certain anxiety in Federico’s words. There is worry, but not for the future (“We will take care of Maria Claudia. That’s the way it is: no one says it, but disabled people are bound to spend most part of their life with their brothers and sisters, they are supposed to carry on when their parents go”). Federico seems more worried about the present and its melancholies. “Claudia knows, she understands there’s something that doesn’t go in her. She knows she can’t do what the others do effortlessly, she knows she can’t get to where the others get to. And sometimes this awareness fills her with anger and sadness. Sometimes not. There’s gratitude in her. On Sunday morning, when I dress her up (clean, scented) I notice that she looks at me as if I gave her a gift, helping her out with something she can’t do alone. Those are nice moments, in which we can ‘tell’ each other many things”.
Federico and his other brother and sister have grown knowing that they had to take care of Maria Claudia. “The parents of disabled children usually have two opposite reactions. Some tend to ‘defend’ the other children, hiding their little sick sibling off their eyes and their worries. Some choose the way of responsibility instead. At times even excessively, far too heavily… So one afternoon you happen to think: ‘Do I really feel like going for a walk with Claudia’, then you hear your mother say: ‘please: take care of your sister’. Then you don’t feel like it anymore, you feel like running away instead”. Federico shared his sorrow of “sibling” with a group of friends. They began to meet six years ago, boys and girls with one thing in common: a brother or a sister with Down’s syndrome. From then on they formed a self-help group (see box). “One day (a day I will never forget) one of us said: ‘I have a Down’ and I, for the first time, could finally say to myself: I have one too, I have a Down too. I’m down too. I have a problem too. Not only my sister, not only my mother. All this is weary for me too. I know I am lucky. For instance, nobody ever discriminated against me because I have an ill sister (it happens to many, though it seems impossible to believe). Besides, I’ve always managed to live my relationship with Claudia kind of serenely: it always seemed normal to take care of her. Still I had to wait a long time (and the other “siblings” like me) to be able to confess my suffering to myself”. It’s getting dark, Maria Claudia is, again, back to her little exile in her room. Standing before us, with her slow dance, she is trying to say something. Federico asks her: “Are you tired? Do you want to out for an ice-cream?”. She sees him through him with her piercing look. Federico got the message: “You’re right Claudia. No ice-cream: you’re no longer a child…”

By Stefania Rossotti

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