Life Among Siblings

The phrase "life among siblings" carries two meanings. On one level, it describes the relationship with one's disabled brother or sister. On another, it names the bonds that form between people who share the same existential condition: being the sibling of someone with a disability. To understand this fully, we must look at it from two angles at once—the personal and the communal. I'm 36 years old and the third of four children. Giovanni is 39, Raffaella is 37, then me, and Maria Claudia is 30, with Down syndrome. Maria Claudia was born when I was almost six. I was thrilled about the new sister arriving soon. Several days passed before she and our mother came home. My father brought her into the bedroom. His face was dark. He held back my childish eagerness—I just wanted to see my long-awaited sister. I wanted to meet her, welcome her, bring her into the family. But clearly something was wrong. In the days that followed, I asked Giovanni, my older brother. He explained that Maria Claudia was sick, that her heart wasn't working properly, that soon—small as she was—she'd have to undergo a delicate heart operation. When I asked if she'd be healthy afterward, he said yes. That was enough for me. Time passed—I couldn't say if it was months or a year—and our family began using a strange phrase: "mental retardation." Raffaella explained it to me the way Maria Claudia's pediatrician had explained it to her. "You know in Mickey Mouse cartoons, when a character gets an idea, understands something, and solves a problem, and a lightbulb goes on over his head?" she asked. "Yes," I said. "Well, Maria Claudia gets that lightbulb too," she said, "but after. A little after. Maybe much after..." That was "mental retardation." (...) I grew up knowing Maria Claudia had Down syndrome. I remember the afternoons we spent doing the "obstacle course," guided by Raffaella, who knew all the planned stimulation activities. Maria Claudia and I would crawl along the hallways of our house so she could learn to move her limbs in a coordinated way. We did "information units" too: we'd cut images and photographs out of magazines and glue them onto white cardboard backing. We made I don't know how many cards. Basically, we'd sit in front of Maria Claudia and say the name of whatever was in the picture, flipping through the cards quickly. The idea was to help her connect the sound to the image so that when she later encountered the real objects, she'd find it easier to say their names. As a child, she did say some words. But for several years now, she's hardly spoken at all. I often went with my mother to the various medical appointments Maria Claudia needed. As we got older—though our mother, it must be said, worked herself to the bone—the rest of us siblings had to step up and take Maria Claudia to appointments with one doctor or another, or to the various places where she did activities that got her out of the house. The AIPD Rome section's Leisure Time Agency, for instance.

The Siblings Group

The Siblings Group Onlus, an association of brothers and sisters of people with disabilities founded in Rome in 1997, works by organizing mutual-aid support groups for siblings. The Siblings Group is composed entirely of and run by brothers and sisters of people with disabilities, organized through a steering committee. We exist to help people recognize the role siblings play in the lives of people with disabilities. To the parents here, I want to offer a suggestion. Have you asked yourselves what's going on in the head of your other child—the one without a disability? I'd recommend reading *Birthday Party* by Paula Fox. The book's main character isn't Jacob Coleman, a boy with Down syndrome. It's his older brother Paul. What's original is that the author tells the story of Jacob's early years through Paul's eyes. Rather than centering the narrative on Jacob's "progress," Fox lets Paul tell his own story, making his inner growth the real spine of the book. With a kind of bluntness, we see the thoughts and feelings of a boy whose life was turned upside down by a brother's birth—a brother he calls "defective" and decides to ignore. In just eighty-two pages, the book captures not only the small, well-intentioned mistakes parents make, but also the crucial role that a capable grandparent or a true friend can play. Paul's story ends with a delicate, unsentimental happy ending—which fits perfectly with the book's style and is one of its great strengths. The Siblings Group began with a phone call more than a decade ago. Giulio Iraci, who is the brother of someone with Down syndrome, asked if I'd be willing to meet with five other siblings at least three times to talk "about us." If the experience went well, we could keep meeting. If not, after the third meeting, everyone would move on. Well, we met not three times but many, many more. A mutual-aid group had been born. Each of us could talk freely about our own experience. We said things we'd probably never told our parents, our best friends, or our non-disabled siblings (it's better that siblings from the same family don't attend the same group). At first we didn't even know each other. Yet there was something we all shared—something that made us open up in ways we never had before. This first group was possible thanks to the idea and support of Dr. Anna Serena Zambon, who to this day, with her characteristic grace, is willing to offer her counsel when needed. After our experience, we decided to give other siblings the chance to untie their own "knots" and stop feeling alone. (...) Every sibling has their own story. It's different for someone who, as the younger sibling, experiences the "overtaking"—that moment when you realize that even though you're still the littler brother or sister, you've become the older one in practical terms. It's different if your disabled sibling is your only one, or if you share the same sex. And there are all the social, economic, and cultural factors tied to each family's unique history. Yet there is a *something*—a shared inner experience that brothers and sisters of people with disabilities have in common. When the conditions are right for us to talk about it, something shifts. The conversation becomes natural. You truly feel your listener understands what you're saying because they're "in the same boat." At first, with help from the AIPD Rome section, we reached out by phone—not without difficulty—to other siblings of people with Down syndrome. Later, through connections with other AIPD sections, the Siblings work expanded to other cities. Because we grew and spread across Italy, we created a mailing list for siblings only—because very delicate and intimate things are shared there. (...) The website www.siblings.it was both a finish line for us and a starting point. Once we went online, contact from other siblings grew exponentially. Now we're a significant national organization and beyond. Since the website came in English, we've been in touch with siblings from other countries. This meant more and more siblings of people with disabilities other than Down syndrome asked to join. Our core idea is to focus on the sibling without a disability. While each case has its own particulars, we've seen that the typical sibling experience—the lived reality of being a "sibling" as such—carries common patterns regardless of the specific disability. It stems from the real condition of difficulty the disabled sibling faces, whatever form that takes. The Siblings Group wants to emphasize that family support services can't target only parents or the person with a disability. Families include siblings too, and their needs and contributions matter. A sibling without a disability who finds peace will naturally improve the relationship with their disabled brother or sister—and their disabled sibling benefits as well. Our mutual-aid groups involve mainly adult siblings—those near or past eighteen—because the topics are delicate. For very young people, we think such work should be guided by trained professionals and psychologists. To show how disability looks different depending on the perspective you take, I want to share one of these experiences, told by Alessandro Capriccioli and titled *Everything's Fine*: "The moment I'm about to tell you about had to come sooner or later. About twenty days ago, I'm sitting with Alberto and Andrea, my three- and six-year-old sons, at a beach kiosk table at Circeo eating a sandwich, in the middle of one of the fifteen vacation days we have together. We're chatting, waiting impatiently for the fried supplì to arrive, and while I steal a sip of cold beer before the food comes, Andrea asks the question I've been expecting for a while now. 'Dad, does Uncle Antonio have a sickness?' I handle the beer's path down my throat consciously, swallow, cough, recompose myself. Good thing I was ready. 'Not exactly a sickness, buddy. Have you noticed something for a while and only asked me today, or did you just figure it out?' 'A little while ago. But does he have the same sickness as Maria Claudia, Federico's sister?' I put together what I know about Down syndrome: first of all, precision, even in the simplicity the moment calls for. I start the conversation I'd imagined beginning many times, and I need to ease into it because the words come out fairly clear. Andrea seems interested and even Alberto stops complaining about the delayed supplì and listens with a serious, thoughtful face. Not quite a quarter hour later, my explanation ends. A couple minutes of silence follow. Then Andrea comments. 'So, he can't talk, he walks kind of badly, doesn't do sports, doesn't work, doesn't go to school, doesn't have a girlfriend, but other than that everything's fine, right?' I smile. That's a good way to put it. Maybe better than mine." Federico Girelli, President of the Siblings Onlus Committee, 2009

This article reproduces part of a presentation given at the conference "What Life Plan for the Person with Down Syndrome?" organized by the AIPD Belluno section on November 29, 2007. The full text of the presentation is available at www.siblings.it under "Our Activities—Meetings and Conferences."