How many times have I heard those words hide a deep longing for autonomy, for independence. And how many times, sadly, there simply wasn't time—or worse, there wasn't patience and attention enough to make that longing real. Yet how often, when someone did take the time and care, we watched unexpected abilities bloom, or saw faces light up with the pure satisfaction of finally doing something alone.
"I'll do it!" "Me! By myself!" "I'm good!"
I've seen these magical moments most often at our camps, where people are willing to pay attention to one another, to "spend" a little extra time on the small daily tasks. The faces and occasions crowd my memory.
I think of Claudia, after a New Year's camp that had been turbulent for her and for us. Her petit mal seizures had alternated with outbursts of violence toward us and toward herself. Sleepless nights had given way to escapes and chases through the village. On the last day, everyone was busy with the final cleaning. Claudia asked if she could sweep the floor. We were nervous—Claudia with a broom in her hands—so we suggested she wipe the tables instead, with a cloth. Rather than get angry and withdraw, as she usually did when plans changed, she took the cloth and got to work. Once the tables were done, Claudia grabbed a large broom, a bucket, a rag, and a scarf she tied on her head like a housewife from another era. With a zeal we certainly didn't possess, she began washing the stairs, threatening anyone who dared step on her masterpiece. Given what we'd seen before, we all obeyed. In the end, the stairs and tables were the only truly clean things in the house.
Of course, the young people's eagerness to help doesn't always work out so conveniently for the rest of us. Two years ago at camp, Carlo—spastic, in a wheelchair—whom his family rarely lets do anything, especially chores, insisted on washing dishes. We tried, but it wasn't working: either Carlo was just watching, or the kitchen turned into a soaked battlefield. Someone suggested he wash the pots outside in the garden, in the sun. Carlo loved it, and so did the friends on chore duty. From then on, Carlo demanded to wash the pots every single day. It was his moment! But we had to create a separate pot-washing roster besides the dish one. Because for Carlo to wash pots required: carrying out a big basin of soapy water, putting Carlo in a bathing suit (and not just him), rinsing the pots after Carlo had wiped them his own way, then rinsing again properly. To rinse, one person had to hold the soapy pot up in front of his wheelchair while another directed the pump spray toward it with Carlo's help. Despite the effort involved—dishes get washed during siesta time, which meant giving up our rest—no one backed away. Carlo's smile more than made up for the lost nap, the soaked clothes, the back-and-forth from the kitchen.
Often, by asking someone to help with a task, we give shy people a way to step out of their shell, and we can build real relationships with people who are handicapped.
Marie Hélène Mathieu
What matters, though, isn't the work that gets done. It's the chance to feel useful, even if in our eyes the usefulness was highly questionable. Like the time Pablo and Monica chose to stay at camp with a couple of friends preparing a fruit salad for dinner while the others went for a walk. Pablo handed the fruits one by one to the people cutting them, and Monica decided that carefully folding a kitchen towel (which she immediately unfolded) was the most valuable help she could give—even though, with care, she could use a knife. The fruit salad was a hit, and the applause was divided equally and happily among all four "workers."
I could go on with stories and anecdotes for a long time, but I don't want to chronicle my years at Fede e Luce. Claudia, Monica, Carlo, Pablo, and so many others want to tell us just one thing: the essential is not to decide beforehand, not to take for granted what the other person—especially someone handicapped—can do and give. But with humility and great patience, accept their proposals and suggestions so they too can be the main characters in the adventures that make us more like friends, day by day.
- Barbara, 1993
What becomes of the meaning of life for an adult with intellectual disability? His life?
How does he experience it? How does he measure it?
Does he too want to live it fully, richly, to make something of it that's worth doing, to succeed, to make it fruitful?
* * *
I have often found myself thinking that a civilization will deserve to be called Christian only on this condition:- to recognize "full citizenship" for the person with a handicap, whatever his condition;
- not to treat him as a child (one who does not speak) but as an adult (one who expresses himself and is heard);
- not to surround him only with our compassion, but also and above all with our respect.