Why speak of beauty while we speak of physical, mental, and psychological disability? Why place two such distant realities side by side? This question has troubled me for a long time—ever since I was stunned by what an elderly friend told me about something that happened to her as a child. She came from a large family with many brothers and sisters. Every Christmas, they would dress up, scrub themselves clean, and pose together for the year's family photograph. But that particular year, as the camera was about to click, her father said to her: "Erminia, you go to your room." Excluded. No explanation.
The reason? During a car ride with her father, she had been in an accident that badly scarred her right leg and left it disfigured forever. "That's why I always wear pants," she told me.
Or consider the story of a mother whose twenty-year-old disabled daughter had never before spoken of her pain at not being "a beautiful girl." One day the mother found her in front of the bedroom mirror, weeping and crying out: "Why did you make me so ugly? Why didn't you abort me?"
Many other examples could be offered to show—if there were any need—how disability, whether mild or severe, visible or hidden, provokes in others the opposite of what beauty provokes. Instead of pleasure, there is confusion, discomfort, revulsion, rejection. These reactions are rarely hidden well enough. Something always shows through, even in people who would never wish to reveal it.
This sometimes leads to devastating consequences. It fills those who bear a disability with profound distress, deep sadness, immense pain—the degree depending on each person's sensitivity—and this wound lasts a lifetime.
"Perhaps I could have shown that there was something good in me, that I could be loved, because I had worth and not just out of some confused sense of protection or guilt." (1)
Why speak of this, then? Readers of Ombre e Luci must be tired of hearing the same things repeated. I ask their forgiveness. But this subject is close to my heart, because it seems to me that with a little understanding and reflection, we could avoid needless and cruel wounds.
Yes, it is truly this way: for someone already wounded by a disability that makes them see themselves as unpleasant to themselves and others, it becomes a real insult to be "judged" for not fitting or not appearing to fit the standards of beauty.
For these already-suffering people, it is hard to understand that beauty does not depend on outward appearance alone. Hard to grasp that what pleases us in a person is the way they carry themselves, the smile that lights their face, how they relate to others, the joy of living they can pass on to those around them, the generosity and kindness they show.
Fortunately, many have been raised by thoughtful parents who, from childhood, taught them the "rules of living well"—ways of embodying a beauty that does not fade, but grows richer with time.
A dreary sermon? An unreality? A cliché? Perhaps. Still, I hope with all my heart to have opened a window for those who struggle to show sympathy to everyone who, because of a defect more or less grave, feels diminished and consigned to a lower rank for life.
For me, who have lived for fifty years surrounded by people with disabilities, for whom it has seemed so natural to care for them, it has become a categorical imperative never to gush foolishly over someone who "is beautiful"—child or adult—while I find it easy to point out the positive qualities of the disabled people I meet, whether friends or strangers.
I wish someone among you would write to me about this—something other than what I hear so often when I raise it: "But of course we're naturally drawn to beauty." That is true, and I grant it. Yet it does not excuse the many foolish things we all do in the presence of someone who is not beautiful.
I close with a meaningful story told to me by the mother of a disabled child in a wheelchair. It expresses what I am trying, poorly, to say: "Mommy," the boy asked, "why is everyone looking at us?" And the mother answered: "Because we're beautiful!"
Mariangela Bertolini, 2012