Among the many daily struggles, one returns again and again: how "others" treat parents of disabled children, and how we treat them in return.
Three particular challenges seem to surface, especially on holiday, when we're forced to meet new people.
"What can we do when strangers don't know what to say when they see our child?"
Try to put yourself in their shoes. Think back to before you had a disabled child. How uncomfortable did you feel when you met someone who was suffering—that mother who had just lost a son, that friend paralyzed in a car accident?
You were so afraid of saying the wrong thing that you acted as if nothing was wrong. At best, you stuck to safe small talk. Maybe you were even afraid to get involved if the person revealed too much pain, if it meant you'd have to share it too.
So now, try to understand the unease of someone meeting you for the first time. If their apparent indifference stings, don't let it overwhelm you. Instead, be the one to take genuine interest—in their family, their struggles, their sorrows and joys. Talk about small everyday problems. Little by little, try to approach others with gentleness, to set the tone, a natural tone for conversation. Often, it will be your own child who builds the bridge between you and them. He becomes the link. He, whom you thought was the obstacle, becomes a sign of communion.
"There are people who, when they see me with Giacomo, cross the street to avoid us, or simply turn away pretending to look at a poster. Of course we can't say anything, but inside—how can we not feel hurt, and often feel resentment toward them?"
We have to do something harder: refuse to dramatize. Lift your heart up. There is often much discomfort hiding behind their apparent coldness. And many times those who wound us are terrified of wounding us. We should make the effort to wish them well, at least for a moment—perhaps by saying a prayer—and then, when possible, make the first move. It's remarkable how often you discover they were only waiting for that.
"What angers me most are those who show pity (I'd call it their dirty pity): 'Of course, you've had no luck…what a tragedy, such a beautiful child…We don't know how you manage to go on!'"
It's true that pity—the kind wrapped in paternalism, in a superiority that feels sorry for us—does anything but help. We want understanding, solidarity, sympathy that acts. Can we do something to draw out these feelings from others instead?
If we don't want to attract pity, we must stop pitying ourselves. It's a subtle temptation that creeps into us easily. Don't dwell on your own suffering. Don't savor your own sadness.
Often "others" tend to copy our behavior. They are with us as we are with our child. How do we see him? In what is broken, disfigured, diminished—or in what is unique, incommunicable yet known to us? A person capable of loving, secret as no other, as no other will ever be until the end of the world?
Those who show pity are looking for refuge in a conventional response. We should not let them settle for another convention, but initiate them into true love.
Those who saw Jesus pass by, carrying his cross, the man of sorrows—they didn't know what face to make either.
Among all these timid people, Veronica and Simon of Cyrene could be the patrons.