"Let me say it straight: this book is beautiful. And I could say nothing less, because Patrizia is my friend, and God help anyone who touches her. I followed these 188 pages even before they were published, backing the crowdfunding campaign that made the book possible. When I finally held that orange book in my hands, I devoured it in one sitting. I laughed, I cried, I thought, I marveled—and it felt as though I were walking alongside her through her extraordinary life. Reading her story was like stepping quietly into her room and discovering its secrets. Patrizia held nothing back. She wanted to try everything. With strength and determination, she overcame her very real difficulties. And she leaves us asking: what exactly is disability? Is it what makes life hard for us, or is it the way others look at us?" (Monica Leggeri)
We decided to interview Patrizia Ciccani after reading her book, encouraged by our mutual friend. You can find the review in our Books section.
Did you struggle to write it, given the need to expose so much of your inner self?
Not at all. Perhaps because for some time I had wanted to write my story. In my work, it was essential to put myself and my lived experience at others' disposal. My disability has been and remains an educational tool.
Though disability has shaped your life so profoundly, many of the experiences and emotions you describe in the book aren't really different from those of people without disability: in that sense, your life seems quite ordinary. I'm thinking of school days, first loves, difficulties with friendships—and later, the struggle to find work. Is that perhaps suggesting something about equality?
I think that's exactly the book's central point: my story is an ordinary one. So why does it provoke surprise? Because disability distorts, amplifies, deepens—makes worse or better—what for others is simply normal. When disability becomes just one characteristic among others, when it no longer marks a boundary, then a story like mine will seem rather less exceptional.
The theme of prejudice, which you've often felt victimized by—but also, occasionally, complicit in—suggests that no one is entirely immune to it. It seems profoundly human: knowing what drives our behavior, something we need to understand—which is why the "circles" you mention in the book matter so much—but perhaps it can never be fully eliminated?
Prejudice is an "economical" way of responding to what we see. We open mental and emotional drawers and find instructions on what to think, what to do, even what to feel about the person before us—and I'm not just talking about disability. We receive these instructions from people who matter to us, and more broadly from the culture we're immersed in, especially during the years when our personalities form and our deepest convictions take root. In that sense, no one is immune. Prejudice changes depending on the culture. Educational work is the only thing, in my view, capable of eliminating it entirely. I'm talking about work that reaches both the mind and the heart, knowledge alone isn't enough—we also have to reckon with the feelings that arise when we meet another person.
When facing someone with a disability, it's easy to act clumsily, intrusively, provocatively, or with indifference. You describe how some blunt, direct comments about your disability wounded you at first, but later led to real friendships. Is there a "right" way to look at someone, a "right" approach?
The right look is one free from fear—on the part of both the person looking and the person being looked at. It's natural to be curious about what differs from our own experience. A look wounds when the person at its receiving end hasn't made peace with themselves. For me, things truly changed when I strengthened my sense of self-worth, partly through my work with children. After that, looks—and certain approaches—simply rolled off me.
At the end of the book, you say you've put down roots nowhere, that disability is the only constant across your family, work, and love life. Is there an inevitable link between these two things?
I don't think so. My desire to explore and try new things keeps me from committing to any single theory, belief, or philosophy. I take something from each experience, transform it, add my own touch—and I think that's independent of my disability. Besides, I don't know who I would be or what my life would be like without it.
Your phrase "the numbers add up" struck me, in the context of the reasoning that it's more likely a disabled person will be loved by another disabled person. Less likely, the thinking goes, that having a disability would give someone the ability to see "beyond" disability itself. Which reasoning is more realistic in your view?
Neither is realistic. Both statements rest on false assumptions that have nothing to do with love. We fall in love because—it's hard to say—but it's not about seeing beyond disability, since disability is an integral part of the person. And it's not about better understanding either, just because you live the same situation. That's what people think who are terrified of falling in love with someone who has a disability. Some people do fall in love and run away. But fortunately, reality shows us many couples who never ask what weight one partner's disability—or both partners' disabilities—carries. They simply live.