They are probably among our most visible and most invisible disabled children and friends. We're talking about people with cerebral palsy: children and teenagers with jerky, unpredictable movements we've passed on the street, or those in wheelchairs whose speech we struggle to understand—and then there's that word "spastic," thrown around casually and carelessly.
Yes, we know them by sight. We've encountered them, but we've often looked away quickly, because they make us uncomfortable, because they frighten us.
It seemed right and necessary, in this second issue of Ombre e Luci—through a mother's testimony, a doctor's explanation, a teacher's account, the voice of one of them—to understand better the particular struggles of those struck by cerebral palsy, often from birth.
Perhaps no other disability demands as much from those who stand beside the afflicted—parents, siblings, educators, friends—as this one does. It demands that we unite heart and skill to reach the imprisoned personality within.
Staying open to hope, without discouragement, without fear of wasting time, over stretches far longer than normal—this is not easy.
And as Gilles's teacher tells us so well: living alongside these young people requires something essential. It requires an unflinching openness to hope.
Hope in the child, the adult afterward, who must marshal every ounce of effort just to gain command of his own body.
Hope in the parents and educators who, endlessly, must help and also push, believe in progress, believe in results.
Staying open to hope, without discouragement, without fear of wasting time, over stretches far longer than normal—this is not easy.
What might feel natural and energizing when children are small becomes burdensome and hard when they grow up. We may find ourselves drawn to them as children, yet lose patience with them as adults—when they want to speak with us, or when we foolishly demand that they be something they cannot be.
Those of us who encounter them often feel a rebellion rising in us at the sight of their torment, their unjust imprisonment in their own bodies.
Would it not be better, for them and for us, to transform this just rebellion into a different way of seeing them? Would it not be better to turn it into an effort to draw close to them and to their parents, to understand them more fully, to slow our impatient pace to match theirs; to help them in concrete ways, to shoulder some small part of their unspeakable struggle, so that together we might hold hope more open?
And finally, who better than they, in this Easter season, to push us—indeed, to force us—to approach the passion, death, and resurrection of Jesus with fuller awareness?
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