What role does humor play in your family?
It seems to me that humor—or at least laughter—has always had a place in our family, and even more so since our son was born.
Humor helped us step back from what we were living through, releasing the laughter we needed to escape now and then from the reality of his disability. Like a deep breath that prevents suffocation and lets you recover your strength. Treating serious or heavy things lightly allowed us not to retreat into ourselves, to put suffering at some distance, simply to decompress. Humor isn't necessarily tied to joy, but it can't be separated from the comic, which is where its healing power comes from. Laughter releases tension, stress, anxiety. It's universal and contagious. With Sebastiano, it has often helped us transform a certain inertia tied to his slowness, his distinctive rituals, his difficulty understanding things.
Can you laugh with Sebastiano about his disability?
It's happened a few times—to help him reflect on himself, to help him gain some distance from his little "habits." But it's delicate ground that can easily hurt. It all depends on how you do it. Sebastiano has sleep apnea, and for several years now he's had to wear a mask over his mouth and nose, connected to a machine.
At first it wasn't easy for him to accept. But we were able to laugh with him by comparing him to his superhero Spider-Man, who also wore a mask. I think that helped him bear it better!
His difficulty speaking clearly and making himself understood—which we listened to with all the patience we could muster—has led to real bursts of laughter, even when his cousins his own age were around. It's so beautiful to see this bond with people who know how to love him as he is, disability and all. Sebastiano can laugh. He has these fits of laughter. He has a sense of humor—I didn't think it was possible. It brings us great joy to laugh with him.
Where do you draw the line?
You can't, of course, laugh at the fact that he's disabled. His disability is certainly unacceptable. But you can help the person living with it to cope with it "well," to overcome certain difficulties that are part of it—difficulties that sometimes prevent him from growing, from being more free.
We worked with him through humor on some of his repetitive gestures—like shaking a branch or string for hours—and on certain things that fascinated him, like water fountains. Little by little, he was able to gain distance from these aspects of his disability that were "isolating" him.
Has your approach to humor changed as your son's disability has evolved, or your desire to laugh at certain situations?
I think it has. It's easier now than when he was small. We were still very overwhelmed by his disability then; Sebastiano was a very agitated child. He's changed so much since then. He's become calm and settled, and within limits, he's become aware of his disability. Through humor, he's learned to step back from himself.
An anecdote that made your family laugh particularly hard with Sebastiano?
Sebastiano has quite a sweet tooth. One day, at the end of lunch, there were two ice creams left in the box and he was trying to help himself again. How do you explain to him that eating too many ice creams isn't good for his waistline? I promised to save those two ice creams for the next meal. To convince him, I found a marker and wrote on the box: "Sebastiano Friday…" promising him that the two ice creams were reserved for him on Friday and that no one would touch them until then. He accepted the deal.
A few days later, at dinner, there are green beans, which he doesn't much like. He keeps them sitting there in front of him, untouched. Suddenly, without saying a word, he gets up, goes to his room, finds a piece of cardboard and a pencil, and writes: "Sebastiano, Friday!"—then puts the whole plate in the fridge.
Interview by S.R., 2014
from Ombres et Lumiere n. 192