It's Hard to Understand My Brother
I was only a year old when Mario was born, and I remember almost nothing of our childhood: I remember crying at Tiburtina Station, watching him board the train to Lourdes in our mother's arms. I remember nights when I'd climb out of my crib to check if Mario was sleeping in our parents' bed. I remember the evening Mario nearly choked on a piece of parmesan he'd swallowed whole, and my attempts to copy him with an apple.
Until my adolescence, Mario was a stranger to me—someone who had stolen all my affection. He wasn't just my younger brother; he was gravely ill, and I couldn't bear it. I couldn't stand telling anyone I had a handicapped brother, because I thought people only felt false pity, and I didn't need that.
Then I started to know him little by little and to understand that it wasn't his fault, that he hadn't come to take from me but to give me something.
I don't know when this happened, but I know that when our father died, I thought Mario was the only one who could understand how I felt. For the first time, I thought of him as my brother—not as a sick person. Since then, it's been a series of small moments of knowing each other, ordinary sibling conflicts, and infinite tenderness.
Sometimes I think I didn't look after him enough, that I was shallow in our relationship. But I think that happens to everyone, not just to us because of our special situation. Now Mario has grown, and he's more violent: anyone who's felt his pinches or bites doesn't forget them.
It's not easy to understand him, and even harder to sense his approval or his contempt, his joy, his pain.
It's impossible to see his tears, and for whoever stands beside him that's terrible. He's always like a child discovering the world, and his small gestures become great conquests. When those dark days end—days of nothing but silence and violence—his "beep, beeps" sound better than gentle music to our ears, and his smile means more than a thousand words.
Faith and Light came into our family about ten years ago, and I have to say we all received it with suspicion. But our friends were more stubborn than we were, and little by little they won themselves an irreplaceable place in our lives.
I admit I'm not always at Faith and Light meetings, but it's not from lack of interest. It's because I like to think Mario has friends who care for him—friends he's introduced to me. I know it's hard to understand, but anyone with a younger brother could explain it to you.
Donatella Dominici
My Son's Difference Still Wounds Me
Many times, after reading your editorials, I've wanted to write to thank you for your gift of expressing with clarity and honesty so many feelings I've had—or had in confusion, like molten magma filling my heart and drowning it.
You have the ability to step back and say in a simple, calm way a "lived experience" that, at least in my life, I can only either "shout" about or keep silent. Thank you, especially, for the article in issue 1 of 1994 ("Why Have You Abandoned Us?") and the one in issue 4 of 1995, where you speak of our children's outward appearance, which doesn't always fit society's beauty standards.
I must confess that it made me reflect on my own resistance to change, because I too—even though I'm the mother of a handicapped son—care about the external appearance of my A. He was born nineteen years ago, four years after L., with various malformations, some serious. Among them is the clearly visible absence of eyes, which remain closed as if he were always sleeping. The great miracle is that despite this "absence," he has normal intelligence, which allowed him to complete high school in languages. He walks when accompanied, does exercise. In short, outwardly he's like everyone else because he studied in regular schools, but overall he's insecure, clumsy, and has difficulty with hand movements. He can read and write in Braille, but he's isolated—partly because of his closed, shy nature, partly because we live outside the city, partly from lack of real friendships, and partly from our difficulty as a family in opening to others. Often we're exhausted, or we feel perpetually different, weighed down by the endless problems—both health and relational—that A. has and we face with him.
As you see, I've slipped into the dramatic and too pessimistic a tone, because it hasn't always been all "difficult" and "ugly," and we've lived through many moments of serenity, satisfaction, and rest.
Our closest relatives—parents, sisters, grandchildren—all live in Rome, so that has separated us from them. A. is very close to one grandmother, but not to his cousins, who are much younger. His relationship with his brother is somewhat ambiguous: apparently affectionate, but with fits of strong jealousy.
Anyway, returning to appearance, I recognize rationally that it's only an aesthetic problem. But when I observe my son, I always feel a tightness in my heart for what he lacks—never hidden by glasses—and I can't accept that he has genetic baldness inherited from his maternal great-grandfather.
This last "absence" seems too much to me, and I want to accept it, but I know I won't unless I change my attitude and mindset toward difference. Other people's differences don't trouble me, because they don't affect me, but A.'s—my now-grown son—still wound me!!!
How can I "grow"? If I lived in Rome, I would come see you and perhaps, with your help, I'd find the way to help my son in the right way. Forgive this disjointed letter, but I wanted to overcome my fear of being judged and misunderstood. I wanted above all to "communicate" with you—however clumsily—and with your whole community to thank you for the warmth you bring through your magazine. It often moves me, because it makes me feel "in communion" with so many people living the experience of daily difficulty and future planning. Finally, I don't feel alone or unique!
Thank you for your faith, which is humble and at the service of humanity—never overbearing, but devoted to awakening hearts. I'm enclosing some addresses of people who will appreciate your magazine.
A Mother
Regarding "After Us" by Rivarolo C.
I'm responding to the letter from Signora Maria Chiara Giglioli (incorrectly transcribed as Ciglioni), "This Project Is Wrong," published in Ombre e Luci no. 52 (October-November-December 1995).
A kind woman from Rome, enthusiastic about the "mini-housing" project that the National ANFFAS Foundation "After Us" is carrying out in Rivarolo Canavese (Turin), introduced me to the magazine. She thought it worthwhile to publish for many families with disabled children in our journal.
The observations and insinuations of Signora Maria Chiara Giglioli, an old acquaintance of ours and former ANFFAS member affiliated with the Health and Assistance Coordinating Committee—now the Coordinating Committee of Turin Associations—confirm that for them Rivarolo has always been a target to destroy, no matter what we do. I don't intend to descend into their polemics or rehash old sterile disputes, but I feel obliged to set the record straight for readers.
For this reason, I invite people who love truth to come and check the assertions of Signora Giglioli, who shows she doesn't know—or only confusedly understands—how our Rivarolo facility has developed. She doesn't feel the need to verify the truth of what she writes.
The concrete wall? It doesn't exist and never did. Is the gate closed? Yes—just like the gates of any house, condominium, apartment. Centralized services? Heating? Laundry? A kitchen? What does that mean?
The thirty disabled youths with psychological disabilities—many of them severely disabled with very limited independence—are housed in three residential units of ten beds each. The youths eat meals, breakfasts, and snacks in their own homes. They go out regularly and live as much like other citizens as possible, with times for work activities and leisure.
In just three years of operation, we've placed two disabled youths in external work—one at a pharmacy, another at the Rivarolo civic library.
ANFFAS and the National "After Us" Foundation don't claim to possess absolute truth, nor do we intend to offer the "best" models. We try, humbly and with great care and effort, to give a concrete answer to the needs of families in difficulty.
We had the chance to offer anxious elderly parents—who in Turin and elsewhere had no residential communities for their adult disabled children—a portion of the Comunità La Torre structure in Rivarolo. We completed it with mini-housing units with the guarantee of welcoming their child if they died. And we did it.
For now we're completing house no. 2 with ten one- and two-bedroom units. The parents of disabled youths who accepted our offer are neither illiterate nor incapable of making their own choices.
All documents were prepared with a notary present and with approval from the family court judges. The guarantees we've given will be respected. I'd like to emphasize that our project is not a commercial venture but a unique opportunity to give some parents peace of mind and security about their children's future.
Wouldn't it have been more responsible for Signora Giglioli, instead of posing empty questions and instilling doubt in families already so tried, to suggest at least one truly better solution for the "before" and "After Us"?
I'm available for any further requests for clarification and documentation from your readers.
Rosina Zandano Coordinator, Comunità La Torre ANFFAS
Vice President, "After Us" Foundation