Paolo has spastic tetraparesis with athetosis (1). The article that follows was written using an electric typewriter and a helmet fitted with a pointer, which he operates to strike the keys; this is necessary because he cannot control his body's movements and therefore cannot use his hands to write.
I'm the "girl," Patrizia, whom Paolo mentions; I'm a home care assistant, as is Gianluca. I'm with Paolo during the school months, in the mornings; Gianluca follows up in the afternoons and during the academic year helps him with his studies. My work means staying beside him—recording assignments, taking notes, bringing him his typewriter, assisting during oral exams, giving him snacks, helping him walk during breaks. I enjoy working with Paolo very much; he's someone who puts everyone at ease. Through spending time with Paolo, I've learned a great deal—about respect and about difference. Our way of seeing the world is different, because, for instance, Paolo observes it from a wheelchair, with a body that often does what he doesn't want it to, while I observe it as someone who controls her own body.
Mine, of course, is the perspective of the stronger person—because it belongs to the majority, and because it holds more power. Through my experience with Paolo, I've come to see that even those of us who believe in respecting difference as a value to defend, there is always a risk lurking: the risk of making the other person's world fit our own. That risk grows greater the more difficulty someone has expressing themselves, or the weaker they are. Recognizing that risk, confronting it—these are the foundations on which to build, together, a world for all of us.
(1) Athetosis: from the Greek, "not connected." The limbs, especially the extremities, move in ways the person does not intend.
Let me introduce myself. Hi, I'm Paolo. I'm a classical high school student. I was born in Rome, at the S. Camillo hospital—that's where they created this masterpiece of mine... and here I am.
I'm 21. I lived for 12 years in Opera, near Milan, and came back to Rome for my future.
I lost my father, Michele, to cancer.
My school years were wonderful in middle school, but real problems started in ninth grade—disagreement, or better to say friction with the people at the front of the classroom... I'd better keep quiet about that! But my old classmates are wonderful; as we get older, they'll probably change for the worse, I hope not.
Now I'm in a different class; my relationship with my classmates and teachers is completely open.
Unfortunately I had to give up a love... she was wonderful to me and would kiss me and I would start to soar. One day we went to Pitigliano with Patrizia, nicknamed "the girl." If we'd gone on the trip earlier I would have cuddled with my love. My only wish is to win the pools and go on a cruise—not with Patrizia and Gianluca, but with my love.
I have two assistants, both from Tuscany. One says he's 30 but looks 3 without the zero; he's from Pisa. Patrizia looks 6 and says she's 23. Sometimes she's a little genius—she reads my mind; sometimes she's out of it.
If only Rome would put ramps on public transportation!
It's a shame that in a civilization and a city—a capital city—as advanced as ours, there's no way for people like me to get around. Sidewalks blocked by parked cars are another example. I get furious because I can't pass with my wheelchair, and there are crazy drivers flying down the street. I hope we can meet someday.
Bye,
- Paolo, 1990