Doing the work of the heart

About to turn 80, the pioneer of care for the disabled opens a dialogue with The Globe's Ian Brown

Ian Brown

From Saturday's Globe and Mail

Everybody with a seriously handicapped person in their life knows this fantasy. The fantasy is a place, somewhere the handicapped person will be able to live and be cared for, not as someone handicapped but as a participating member of the world, for as long as they survive.

It's a fantasy, but a compelling one.

In the fantasy, there are no run-down group homes on the edges of cities, out where the housing is cheap but not exactly uplifting, where there are always too many extension cords snaking across the floor.

Instead, in the fantasy, there are communities of people, preferably in the country or perhaps by the sea, living in gorgeous, architected houses - because (fantasy thinking goes) the handicapped have so few satisfactions, don't they deserve to live in a beautiful place as much as any of us?

Another thing about the fantasy is that there are no distinctions between the handicapped and the professional social workers who care for them, between the normal and the broken, no wall between Them and Us.

There are simply people who live together and help each other. The workers do the physical work, the handicapped do the work of the heart.

In the fantasy, these communities have a noble and respected history and last as long as they need to, without recurrent funding problems. Because even in the fantasy, everyone knows the handicapped never go away.

The strangest thing is, the fantasy almost exists. Forty-four years ago, in the village of Trosly-Breuil 70 kilometres northeast of Paris, as an alternative to the vast, stark institutions that were the order of the day, the community of L'Arche was founded by Canadian-born Jean Vanier, who turns 80 on Wednesday.

Its beginnings were humble - a derelict house Mr. Vanier bought for himself and two seriously handicapped men, one of whom couldn't speak. (A third man proved too severely disabled to live with them, and moved out within days.) There was no indoor plumbing, no running water and no operational plan beyond an intention to "live together, travel and have fun." A world view and a global movement nevertheless sprang from that simple commitment.

Today, L'Arche is 130 communities in 34 countries on six continents, and Jean Vanier is the world's most significant thinker on the subject of disability. But the original sign - the word "L'Arche" carved by hand into a piece of wood - still hangs in Trosly.

The central principles of L'Arche are unchanged as well: that the handicapped help the able-bodied more than the able-bodied ever help them, because the handicapped remind us of our greatest assets, our weakness and humanness.

History is tucked everywhere between the quiet villages of this region. The French armistice with Germany was signed in a nearby forest, as was Germany's less-honourable armistice with France, in 1940. A siding in the forest not far from here was one of the loading points for trains bound for concentration camps in Eastern Europe.

But there are heroes too. Jean Vanier still lives in a tiny, four-room house in Trosly, steps from the original foyer (the name L'Arche gives to its homes). Tall, white-haired and vigorous even in his 80th year, he still rises every morning at 6 and still sees visitors every day after breakfast. He still eats lunch and dinner with the residents of L'Arche, still greets them in the street as friends. It's often impossible to tell if they're handicapped or not. But Mr. Vanier still considers the handicapped to be "among the most persecuted people on earth."

Last April, I visited Jean Vanier in his house in Trosly. We spoke on and off for two days, in the paper-strewn study off his kitchen. The talk ranged widely - from my handicapped son, Walker, to the crippling guilt parents feel when they give their handicapped children over to the care of others, to what a handicap means in contemporary society.

They were astonishing conversations, and I had suggested we broadcast them or put them on the Internet. But Mr. Vanier demurred. He preferred letters, a quiet correspondence.

"I don't want to be a bigger authority," he said. "I want to be less of one, as I get older and more frail. But I can write about where I am - here, in this small place, about my friends. About the garden." And indeed, the more we talked, the more Mr. Vanier spoke of his own private journey - toward old age and weakness and death, the universal steps everyone takes.

"Are you afraid of dying?" I asked him one morning.

"I'd say I am not frightened of death," he replied. His voice is light, raspy, a surprise in such a big man; his manner is natural and unaffected, a surprise in someone so famous. "But I can be frightened of anguish."

Everyone knows anguish, he explained: Anguish is sudden fear, but also regret, the experience of looking back at our lives and wishing we had seized this or that chance to be more human, more fully ourselves.

"There's a really interesting text in Genesis," he said, "which is probably the oldest book we have about the beginnings of humanity: At one point, Adam and Eve separate from God. And then God runs after them, and says, 'Where are you?' He doesn't say, 'You're bad!' He just says, 'Where are you?' And Adam responds, 'I was frightened, because I was naked. And so I hid.' "

"So," he said, and paused. The problem was apparently obvious. "Fear due to nakedness, which leads to hiding. And what is that nakedness we fear? It's our mortality. It's our incapacity. It's the realization that I'm not in total control of my life. I can go out here and fall on my neck, and you would have to bring me to hospital, and so on. We can have all the insurance we want, but still we move to death. Whether we like it or not, we are not in control.

"And so the whole point, the reality of my life as a human is to accept myself as I am. At the age I have. So that at the age of 80, I live as 80, and not as if I'm 40. Live and enjoy life and don't spend my time weeping, and saying, 'I don't have any more power, people are not coming to see me.' Don't spend your time regretting. Spend your time living."

This was something he had learned, he said, from his handicapped companions, from 40 years of living with the intellectually disabled. They accepted themselves - they just didn't have a choice in the matter. The trick was to learn from their example, do as they did, to accept "that I'm okay, and have gifts in me, and can use them, and can give life to others [by accepting them]. But as I get old, what will be the gifts that I can use?"

He stopped. (He thinks in real time, the way he speaks.) "I don't know." He stopped again. "It might be just to pray. To believe that all I can do is to pray."

I said: "I have a language with my handicapped son, who can't speak, where I connect to him by clicking my tongue." The whole half-assed idea just came blurting out of me. "And he recognizes it, and sometimes responds. Sometimes that feels like praying to me."

"That is praying." Mr. Vanier said. "You see, praying is not doing. It's a moment when we're clicking. A lot of people don't know that. And because they're not going to church on Sundays, they feel guilty. They don't know they're praying. Through compassion. Through peacefulness and thankfulness for who you are. For the body you have, for the age you have, for the family, for the flowers that you see outside. Gratefulness. Prayer is communion and gratefulness."

"So prayer," I said, "is a way of reminding ourselves to be who we are," he said.

Mr. Vanier sent me a postcard a few weeks later. The postcard was a painting by Sieger Köder, a German soldier and prisoner of war and priest who became a painter: Jesus washing the feet of John the Baptist.

"I am in a monastery in Belgium," Mr. Vanier had written in a tiny hand on the back of the card, the lines spaced and indented. Like a poem, and like a prayer:

A time of rest

Of heart

Of prayer

Walking in the forest

As I walk towards my

80th year

I am touched by your son

Maybe he is the only one

who makes

A bit of sense

You are a good father

peace to you

Jean

Beginning next month, The Globe and Mail will publish an ongoing correspondence between Ian Brown and Jean Vanier.

***

Vanier on 'The right to be a rotter'

I have always wanted to write a book called "The Right to be a Rotter." A fairer title is perhaps, "The Right to be Oneself."

One of the great difficulties of community life is that we sometimes force people to be what they are not: We stick an ideal image on them to which they are obliged to conform. We then expect too much of them and are quick to judge or to label.

If they don't manage to live up to this image or ideal, then they become afraid they won't be loved or that they will disappoint others. So they feel obliged to hide behind a mask. Sometimes they succeed in living up to the image; they are able to follow all the rules of community. Superficially this may give them a feeling of being perfect, but this is an illusion.

In any case, community is not about perfect people. It is about people who are bonded to each other, each of whom is a mixture of good and bad, darkness and light, love and hate.

And community is the only earth in which each can grow without fear toward the liberation of the forces of love which are hidden in them. But there can be growth only if we recognize the potential, and this will never unfold if we prevent people from discovering and accepting themselves as they are, with their gifts and their wounds. They have the right to be rotters, to have their own dark places, and corners of envy and even hatred in their hearts. These jealousies and insecurities are part of our wounded nature. That is our reality.

Jean Vanier, originally from his book "Community and Growth" (1989), reprinted in "Jean Vanier: Essential Writings" (Novalis, 2008).

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