Jean Vanier on accepting who we are

Last summer I visited L’Arche (The Ark) in Trosly-Breuil, France—the birthplace of a community that brings together adults with intellectual disabilities and young adult volunteers known as assistants. The model, conceived by humanist, philosopher and theologian Jean Vanier, now operates in 40 countries. In a phone interview on Monday I asked Jean what he’s learned living with people with intellectual disabilities. I was struck by the beauty of how Jean speaks and listens.

BLOOM: Is intellectual disability the most stigmatized of disabilities?

Jean Vanier: I think it can be considered one of the most stigmatized because it touches something very profound. Many people define human beings because of their capacities and success and so on. Aristotle would define someone as a ‘reasonable’ person, a person who can think, a person who is capable of doing things. He would talk about the intellectual component. And of course people with intellectual disabilities are wounded in their intellectual component, but they have another component which is very much alive, which is their capacity to love.

Somewhere in their deepest personhood they are rejected. This is the story of people with intellectual disability over the whole of history. They were considered as a punishment from God. We see this even in the Gospel of John, when the disciples of Jesus see a man born blind, one asks: ‘Is it because of the sins of the parents or his sins?’ For someone to be born without seemingly a capacity to be fully human is seen as something horrible, and therefore these people are hidden away. People don’t realize that the secret of being human is the capacity to understand, but more than that, it is the capacity to love.

To be human is to bring the head and the heart together. Individuals with severe intellectual disability have the extraordinary capacity to enter into relationships, to trust, and to love, and that is maybe the great secret of the human being. It is love that will unify the human family. We need to learn to love each other, not just to have a good head where we’re proving that we’re better than others.

BLOOM: How has your thinking about life changed as a result of living with people with intellectual disabilities?

Jean Vanier: I think what I’ve discovered living with them is about the primacy of relationships. The important thing is to be in communion with people and from communion rises up joy and fiesta. We human beings are made to have fun, we’re made to be happy, we’re made to be people of joy and joy flows from communion and unity. Anguish and violence comes from all the forms of disunity.

So human beings are called to become one and to be together. People with disabilities call forth what is most beautiful in me and others, which is the capacity for tenderness, but they also call forth difficulties, to see my own difficulties in relating and call me to work on them.

BLOOM: I often feel that my son’s disabilities are shining a light on all of my weaknesses.

Jean Vanier: That I really understand—showing a light on our weaknesses, showing a light on what it means to be human. The danger in our society is to pretend that we’re strong and powerful. We can do things, but we are all human beings. We were born in weakness and we will die in weakness. We were born to grow strong but also to grow weak. Discovering our weaknesses is about discovering who we are. The fundamental thing for human beings is to accept ourselves as we are, with our strengths and also with our weaknesses. And weakness is not something bad. It implies: ‘I need your help.’ That brings us together, because I’m not able to do everything myself. I’m calling out: ‘Can you help me?’ Fundamentally, we human beings, what we need most deeply is to know that we are loved and accepted.

BLOOM: We live in a fix-it culture where no one is ever good enough as they are. I think for parents of children with intellectual disability, there’s a real conflict between accepting your child and trying to change your child so that your child will fit into the world better.

Jean Vanier: That is a tension even for us here in L’Arche. The great fear of parents is that they don’t want their child to be looked down upon and rejected, so they want them to be as capable as possible and accepted. All of us have to go through this tension between showing we are capable and accepting ourselves with our weaknesses.

BLOOM: My son is 19 now, and sometimes I’m tired of the pressure to always be working on things with him. I feel that I miss out on enjoying the moment.

Jean Vanier: What I hear also, and I find it beautiful, is taking the time to enjoy the moment, to be together, to have fun together, so that he discovers that you love him—not because he can change and be better, but just as he is. To rejoice, to be together, each one of us as we are, that is fundamentally important.

BLOOM: It’s often assumed that people with intellectual disability can’t have a good quality of life, particularly in the medical world.

Jean Vanier: I think richness of life comes from richness of relationship. If we view richness of life from the point of view of success—power, a beautiful marriage, two cars and a house, having two children—the reality of human beings is not that. You can have all the riches of the world and still be terribly upset because no one really loves you and accepts you in your fragility.

When I think of the richness of life I think of someone like Antonio, who was here with us. He had an incredibly beautiful face and eyes and smile. He couldn’t walk, he was as fragile as you could imagine, but he had a capacity to trust us and to enter into that relationship to be with him. He changed people’s hearts.

He brought us to the place of rejoicing that we are human beings together. So if the richness of life is viewed only from society’s view of success and power, then people with intellectual disabilities do not have that. But in reality, if we accept them as they are and if they accept us as we are, we can enter into this beautiful relationship which is a relationship of celebration.

There is a beautiful story of a young man in the Special Olympics who wanted to win the 100-metre race. He got into the finals and he wanted to be first. The guy running in the next lane tripped and fell and he stopped, picked him up, and they ran hand in hand, and finished last. He was accepting not to have the prize, but to live community and solidarity.

BLOOM: The neurodiversity movement has been looking at advantages of different types of brain wiring. Do you think there are positives that come from the way people with intellectual disability think and see the world?

Jean Vanier: I think we have to be careful. People with disabilities are so different from one another. What is absolutely certain is that their fundamental need is to be loved, and to enter into relationships.

The danger of many human beings is that we’re caught up in the idea of success, of power, of doing more and more and having more. We do have to help people with disabilities to progress—to be better in the world of communication, to be able to do things to become more autonomous. But what is the most important is this incredible capacity for friendship and love, and the way they can throw themselves into our arms and be as they are, simple and loving.

People like your son can be caught up in this fear of not being accepted by society, and at the same time being very sensitive to love. I’m sometimes touched by the suffering of people with disabilities who are caught up in the same dilemma or tension as many mothers: wanting to be better, wanting to do things and be acclaimed, but at the same time accepting to live in the moment of tenderness and love and celebration and dancing.

BLOOM: Do you think our culture will ever change to the point that people with disabilities are accepted?

Jean Vanier: I think there will always be a tension. I think something has to be done in schools. I think if one can teach right at the beginning of school, not just the need for success and to go up the ladder, but the need for being together. I was at a school in Calcutta where they were in a circle and the ones who were better were helping the ones who were doing less well. It’s to help children to discover the power of love. That togetherness is something incredibly beautiful.

The fear is that our schools are being run on the power system and children are not learning to be together in a place of happiness and love. This is the problem of deep individualism.

But of course parents are struggling with this. Parents of assistants at L’Arche are struggling with this. I was speaking at a school of one of our assistants and one of the parents said ‘What are your problems at L’Arche?’

I said one of the problems is that you’re very happy if your child comes to stay at L’Arche as an assistant for six months. But if your child wants to stay longer, you’re upset. Because you say ‘staying with people like that is degrading.’

There’s a whole change needed and let’s begin at the school level, to help children so that they no longer despise a child in the classroom who’s weaker, but they can see that it’s a benefit to everybody and it brings forth the beautiful qualities in children.

BLOOM: I was amazed when I visited L’Arche in Trosly-Breuil last summer to speak with an assistant who’d been living there for 36 years.

Jean Vanier: People discover a new way of being. They discover how their qualities of love have grown, and how they’ve grown, and how fundamentally they’re deeply happy here. We have fun together. It is good to be together and there are many people here, in this particular community, who have been here a very long time.

Amazingly, there are a number of young couples aged 28 to 40 who are asking to come to L’Arche as assistants because they have experienced all of the conflict and difficulties for a family in the ordinary life of society. These are young couples who are leaving society, where there’s all this tension to go up the ladder, all this stress, to live here in community and to raise their families here.

BLOOM: What advice would you give parents of children with disabilities?

Jean Vanier: My idea would not be to give too much advice but to be with them and to listen to them and to hear first their pain, and to gradually help them discover that their child has values that they have not yet seen in him.

I would encourage them to come to a L’Arche home and to see the fun and happiness that people have. But as I say, I’m wary of giving advice. I like to be with people and I really understand parents who in some ways feel crushed and hurt, because they were hoping so much for a child that would grow up and have children, and the parents would be grandparents. So, first of all, I would understand the pain of people. There is pain. But then to walk with them and help them and to discover that their child is really very beautiful. It can take some time for parents to come to that place of rejoicing.

BLOOM: Do you find that parents’ perceptions of their children change after they come to live at L’Arche?

Jean Vanier: When a child comes here there’s a joy and a pain. Pain because their child is no longer living with them, but a joy because they know that when they, the parents, die, their children will be well.

There’s always a tension with parents, and the more disabled the child is, the more the parents have grown to love him, to hold on to him, to nurse him, to care for him or her and then the idea of losing control over the child or losing that relationship is sometimes very painful.

But parents are there not to hold on to children, but to help them be well and to grow according to their own gifts.

BLOOM: As a parent I’m fearful when I hear of stories of abuse that takes place, not at L’Arche, but at other homes for adults with disabilities.

Jean Vanier: L’Arche began when I took two men out of an institution which I considered violent and not good and not really attentive to the needs of people. There is, let’s face it, the whole history of humanity has been a long history of abuse and violence towards people with disabilities.

People don’t want to have people with disabilities around because it reminds them of their own disabilities and capacity to die. There will always be a struggle and parents have to realize that and we have to work together, not just for people with disabilities, but for people with old age, with Alzheimer’s, with other illnesses.

And there’s a whole reality between those who are rich and those who are poor. I was in Chile some time ago and going from the airport to the city and my driver pointed and said: ‘On the left are all of the slum areas of Santiago. And on the right, all of the rich places, defended by police and military. And nobody crosses the road.’

This is a bigger challenge than just people with disabilities. We have to discover that to be a human society we have to be intensely present to those who are weak and in need. A society can only be human when the strong and weak come together to celebrate life.

BLOOM: It’s funny that we’re all mortal and yet so often we go through life pretending we’re invulnerable.

Jean Vanier: We praise the strong, we praise those who are winners, and we tend to despise the weak, or we feel despised if we are weak. The greatest pain for human beings is humiliation, to be despised and put down.

The greatest fear of people who are strong is that one day they will be humiliated and won’t succeed as they wanted to succeed. We need to understand that our treasure is not in our power, but in the deep acceptance of who we are, and who we are is different but we are all people. If we try to be who we are not, that tension will someday explode.

Everybody is frightened of the word death. We’re taking that away and instead accepting that we are born to live and born to die, we are born to grow strong and born to grow weak. We are a harmony of strengths and weaknesses but it’s because of our weakness that we need help and we need relationships. The magic words are always: ‘I need your help. I need to be with people.’

Stepping out: Moms move from cautious to confident

Five children who attend Holland Bloorview's Play and Learn nursery school are participating with their moms in an adapted kids' version of a Toronto triathlon called Family, Fun, Fit on June 1.

The idea came from Andrea Haefale, a phys-ed teacher and marathon runner whose daughter Bella, 4 (above), has developmental delay and autism.

The kids' triathlon is a 15-minute event that begins in the wading pool, moves to adapted trikes, and then walking or wheeling in wheelchairs.

It's a bold step for a mom who used to hold her daughter back from public places.

"I wasn't so open about my daughter a year ago," Andrea says. "I wasn't confident to bring her to a place like the Science Centre or zoo. I was worried people would be asking: 'Why doesn't she walk? Why doesn't she talk? Why is she still drooling?'"

Andrea says that after her daughter's diagnosis she had little contact with other parents of kids with disabilities. "We were alone. Then when I brought her to Play and Learn and met the other parents there, it was like 'Wow, I'm normal. I have problems and some of these people share the same problems I do.'"

Andrea says that talking with other moms in the hallway, going for coffee while their kids are at preschool, participating in Play and Learn parent discussions and having playdates has been "almost like a support group for us. Meeting other moms really helped me be able to come to an acceptance that hey, there are a lot of other people living the same life that I do. And these moms want their children to participate in things other kids do. We want to bring awareness to other parents."

Andrea says the acceptance she's found at Play and Learn has extended to other parts of her life. "This is the first year where I'm able to talk about my daughter openly with my colleagues and friends, and have the confidence to go out, too. I used to be so embarrassed because Bella drools profoundly and still wears a bib. But now if someone asks me about it I can say: 'Yea, she drools a lot.'"

Andrea says she's no longer cautious about letting Bella try new things. "I want to introduce her to as many activities as are out there. I want to give her an opportunity to try it, and if she doesn't like it, we've tried our best."

Andrea received a flyer about the triathlon and contacted the organizer to find out if they could adapt the event for children like Bella. This will be the first year children with special needs participate, she says. "All these people are willing to have us be integrated into this race successfully, and for our kids to be active."

Let's give kids who don't speak tools to succeed

How many words would the average, middle-class three-year-old child hear spoken to her in the course of a year?

"About 6 million," said Pat Mirenda, an expert on augmentative and alternative communication (AAC) who referenced a related study during a keynote talk at the Bloorview Research Institute's Pursuit Awards yesterday.

Pat said we could expect a deaf child of deaf parents to watch about the same number of signs over a year.

But what about kids who can't speak or sign and use a voice device or pictures to communicate? How often would a young child see these symbols used around them in a year?

"Zero," Pat said. "Zilch. We're not in a symbol-using community and children rarely see others using the same symbols they use, yet we expect them to magically be able to know what to do."

We know that children need to absorb vast amounts of language before being able to express it, Pat said. We know that modelling of AAC is important. But this is an area where we aren't translating research into practice.

"We don't routinely do it," Pat said. "We don't teach teachers they should point to symbols when communicating, we don't teach parents to point to symbols, and we don't teach educational assistants and peers."

Another gap occurs when we assume children who use AAC can't learn to read. "If we can teach a child to manipulate 26 letters, they can say whatever they want," Pat said, noting that expression isn't dependent on the number of symbols programmed into a device.

"But literacy is not a routine practice, still, in Canada, the U.S. and elsewhere in the world." Too often professionals have low expectations for complicated kids and make a decision, at age two to five, that literacy isn't a goal. "We should just teach them to make sandwiches," she said.

In an earlier interview, Pat said this sets children who use AAC up for exclusion. "They're the ones in self-contained classrooms who often don't get literacy and language instruction, and people just say 'that's too bad.' It's kind of stunning in 2013 that people still think they can tell a book by its cover.
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"We know how to teach children to become literate, but we're not doing it," she said at her keynote.

Historically clinicians have decided what type of AAC system a person uses, and the individual had no input, Pat said. 

She talked about the importance of self-determination for people using AAC, which she described as including the following:

Autonomy, which means being able to act according to your own preferences, interests and abilities. For example, if a child wants four-letter curse words programmed into his device, he should get them.

Self-regulation, which involves problem-solving, goal-setting, self-monitoring, decision-making and self-evaluation. Of course clients won't always make good choices, but that is true of all of us, Pat said.

Psychological empowerment, which is about helping children see they can make things happen in their own life. It's about "learned hopefulness," rather than "learned helplessness," she said.

And self-realization happens when you understand your strengths and challenges and can capitalize on what you're good at.

Pat said the focus must be on what a child needs to communicate in settings that are "important and motivating to the child."

She said that too often voice devices are programmed with words for "wants and needs" but not for everyday socializing which is the foundation of friendship. Being able to tell jokes, make comments, and use phrases related to games are important to kids. "Relationships" are the ultimate prize, Pat said, and if an AAC system isn't helping a child maintain and enhance their social network "what are we doing?"

Pat is a professor in the department of Educational and Counselling Psychology and Special Education at the University of British Columbia. She is also a board-certified behaviour analyst.

My son's climb is steeper than most

By D. Christine Brown

Our 4-year-old son is recovering from severe brain inflammation 20 months ago. Although he's now developmentally delayed, has an irregular EEG on the left side of his brain, and also has a resulting autism diagnosis, he's been looking progressively more "neurotypical" as his brain heals. It's been a journey of hope and optimism for his future.

But a few recent events planted some seeds of doubt in my mind. First there was the story of the parents who could no longer care for their 19-year-old autistic son, so left him at a government office. The boy is at the developmental stage of an 18-month-old, which includes unrolling the toilet paper, then trying to shove it all into the toilet.

Then I attended Silken Laumann's BLOOM speaker event. She mentioned worrying that her 17-year-old autistic stepdaughter could at any moment throw a jar across the room at the head of one of her biological children.

I'm also finally reading Bad Animals after seeing author Joel Yanofsky speak at Indigo last October. In it, he describes how you have so much hope when you first get therapy for your child after an autism diagnosis. Then, at some point, you realize that he's starting Grade 5 and maybe this is the way things are going to stay.

I began to picture our lives going forward. What if Lucas doesn't fully recover? Will these examples become our reality once Lucas is too big to pick up and move around?

I decided to give a music playgroup a third try. It was the same group we had started just before my son's brain inflammation, just over a year-and-a-half ago.

We tried it again last year, but he wasn't ready yet. I thought he might be ready this year so off we went to the indoor playground with the other parents (mostly mothers) and young toddlers.

My son towered over them, but they paid attention to the leader. They put their hands in the air on command, their knee up to balance during the appropriate part of the song. My son ran off to return to the slide and ball pit. There was zero participation on his part, aside from looking at everyone's face as he rotated around the middle of the room before racing out.

Towards the end of the class a father was leaving with his daughter and passed us on his way out. "Oh, he wasn't interested today?" he said, gesturing to Lucas up in the climbing structure. Here came the eruption of doubt.

"He's developmentally delayed," I said. "He's recovering from severe brain inflammation." The poor guy was sympathetic and asked if Lucas would recover. "Nobody knows," I said. "It's a wait and see." He commented on how hard it must be for us, and how he wished he could do something.

Tears welled up. "I'm sorry," I said. "I'm not usually like this, but in situations when I see other kids, it hits me." I also told him how Lucas has been recovering and making great progress.

"At least he looks really happy," he said. "He is," I said, then quickly scooped up Lucas, gathered our things and headed to the park before the rest of the class let out, wiping the tears off my face.

Lucas' behaviour has recently regressed a bit. He's mouthing and throwing all objects again for the first time in months. It's relentless; he's throwing everything in sight. As we walked to the park, I was in a cloud of despair, trying to be cheerful as I ran with my son through the grass on a beautiful sunny day, watching him kick sand and throw sticks. I was more discouraged than I'd been in a long time.

On the way home from hearing Silken Laumann speak, I heard philosophers interviewed on CBC about the moral obligation of helping others. One discussed the lack of difference between saving a drowning child in front of you and donating to famine relief in Africa: they're both going to make a difference in someone's life.

I thought about the misfortune of my son's brain inflammation and subsequent setbacks and how determined I am to facilitate his (full) recovery. He indeed, might recover. I thought about the children who don't. What about their parents? Some never get a break.

Our current reality is but a glimpse into the hardships in their world and it is draining. It is defeating. It isn't fair. Of course there are also gifts, insights and great moments, but how would I feel if my son escaped the fate that others don't? What if the day comes when my son no longer has disability status?

I know I can't go back to a normal life after all we've experienced.

It's my moral obligation and duty to advocate, and if my son recovers, I'll have the energy and time that others don't. I'm a researcher by profession and have gained a wealth of new knowledge since our road turned. I'm persistent and resourceful. I'll do what I can make to a difference: to promote and facilitate more understanding and support for other families living with disabilities.

After the failed music group, Lucas decided to run along the path surrounding the park. At the end there were only three choices: on to the road of oncoming traffic, turning back, or going up a very steep hill. Lately Lucas has enjoyed saying "too steep" about the slides at the playgrounds. I saw this as a great opportunity to incorporate another context for the word steep. "Lucas!" I exclaimed, "Look at the steep, steep hill! Can we make it up the steep hill or is it toooooo steep to climb up?"

He laughed, I grabbed his hand, and up we started. I suddenly remembered that as a small child I hated group activities. I didn't like to conform. Maybe Lucas just has my personality, I thought.

Lucas was laughing and giggling as we zigzagged up. It was exhilarating. At the top I stopped and held Lucas, looking down. "Look!" I said. "We made it!"

And then, BAM! It came to me: this was our last 20 months and we've made it to the top. Lucas is doing great. He's recovering and making tremendous progress. We don't have to compare ourselves to the other toddlers. Their hills haven't been as steep.

Do you have a physical disability? Want a job?

Teens with physical disabilities are about half as likely as typical teens to have part-time jobs. They may face discrimination and employers who aren’t willing to provide work accommodations or training.

Research shows that volunteer and work experiences during high school are predictors for finding well-paid work as an adult. Yet getting those jobs as a teen is harder. Many employers complain that young workers aren’t ready for work and lack the social- and problem-solving skills they need.

Holland Bloorview researchers are doing a study to learn more about the job skills teens with and without disabilities have.

We’re looking for high-school students in Grade 11 or 12 in the Greater Toronto Area to participate in a mock work interview and employment activities as part of this research. Teens with and without physical disabilities are sought.

Participants receive a $10 gift card, credit for volunteer hours and feedback. Please e-mail Sally Lindsay.