Words Matter

Guido and Velia were childhood friends of my parents. They reconnected after several years, and one Sunday they came to visit. Guido introduced his two teenage daughters to us children this way: "This is Nené and Cecilia. Cecilia is a bit sui generis." He said nothing more.
Cecilia was the first person with intellectual disability I ever met. More than sixty years have passed, yet I remember that introduction still. Not because meeting Cecilia troubled me—she was a sweet, kind girl, actually—but for the opposite reason: the delicacy of how her father presented her. Sui generis. I didn't know exactly what it meant then, but it sounded important because he'd used Latin. Later I understood he meant "she's made a bit her own way." This didn't seem like something grave or negative.
As a child, I knew no one—adult or young—with intellectual disability. The only disabled people I remember, the ones who struck me, were war invalids and people with physical conditions. Children with any kind of disability were described with pitying ignorance as unfortunate, more or less depending on severity. A person with even a mild limp was said to be "a bit unfortunate, or afflicted in one leg." Cecilia had no physical disability. Her father had called her sui generis, so she couldn't be unfortunate.
Over the years, both personally and through work, I met many disabled people. And if we look at the terminology, after the unfortunate, there were subnormal children, mongoloid, retarded, spastic, polio, handicapped, disabled, and differently abled—almost all terms that, over time, became insults. The same happened with the word negro, how we once described, without any mean intent, people with dark skin. Because racism and discrimination don't live in the word itself, but in the mind of the person using it. (As a boy, my son asked if he could say "carrot" instead of curse words. I said of course—carrot isn't a curse word. For a while afterward, I heard him calling his friends "carrot" whenever they fought!)
I believe the term we use matters little if we use it with respect. What matters is how we see and feel toward the child, the friend, the person with disability. Do we still see them as unfortunate? In late 1969 I began a professional internship at a rehabilitation center, where they hired me afterward. I worked there three more years. I remember visiting the center for the first time—one of the few in Rome that took very young children—I kept a professional face, but inside I swallowed tears. Then I got to know those children well. Many made me cry afterward. But what I gradually discovered in them was joy and a will to live, the innocent unconsciousness of any other child, their beauty. Before leaving to work elsewhere, I took photographs and, as we did then, put them in the family album. Someone seeing those children, sometimes with uncertain expressions, in braces, some in wheelchairs, asked why I'd put such photos in the album. The first time, I answered, surprised, that they were photos of children I was particularly fond of, nothing more. Many understood. They looked more carefully and finally saw the children, not their handicap. Others turned the page.
With disabled people, as with hospital patients, something often happens: when someone is hospitalized, they're no longer Mr. Rossi or Mrs. Maria, but the gallbladder in room 12, the hip replacement in bed 3. At school I remember some teachers saying: "In my class there's a child…" then lowering their voice: "handicapped." They described that student by everything he couldn't do, his misbehaviors. It was hard to get them to say what he could do, his ability to communicate and connect with classmates. This was the vision of the unfortunate. And some parents thought it wise to shield their own children's eyes lest they become saddened.
Today that image of wretchedness has much faded, thanks to greater integration of people with any kind of disability. This doesn't mean disability is seen as fortune, but certainly it's no longer something to hide, and it's not the only thing that defines the person who carries it. Yet despite this, it's often the first thing said about someone, always with negative connotation and regret. You begin to sense a shift among young couples, especially mothers, who look at their child not only with love but with pride, as they do with all children. They speak of disability with less embarrassment. If a child hears his mother speak of his affliction as misfortune, how will he build confidence in himself? That very thing—self-regard—he'll need more than others, burdened as he is by handicap. What view will he have of himself?
This new vision of disability spreading among us we owe partly to disabled people who, with courage, stubbornness, and joy of living, have shown themselves and others how to face even grave difficulties. Bebe Vio is one example. So are many young people with Down syndrome—people who, as Alex Zanardi said, learned to look at "the half that remained, not the half that was lost."
If it's true that nondisabled people must learn to know and recognize the value, beauty, and gifts of a person with handicap, and welcome them knowing and accepting that everyone is sui generis and we all have limits (let's not fool ourselves), it's also necessary that families with a disabled member help others by recognizing and sharing that person's positive qualities. Not everyone is ready to see the disabled person in the best light. Many don't know how to act around disability. Once in a café I stroked a beautiful boy with Down syndrome and said, "How beautiful you are." His mother looked puzzled and said nothing. I don't think she was sure I meant it. Another mother would have smiled, pleased. She didn't. Maybe she wasn't used to it.