Monday, June 24, 2019

Jean Vanier on Accepting Who We Are.

RIP Jean Vanier and thank you.

I am sharing a post from Parenting Kids with Disabilities blogspot from Wednesday, May 22, 2013.



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.’


Thursday, June 20, 2019

What Ever Happened to Michael and Valerie Kroenke?






As a recent immigrant back in 1980, I was placed in an English as a Second Language (ESL) group in my first grade classroom at Wilton Place Elementary School, one of a handful of schools nationwide with a dual Korean language immersion program.  While most of the children worked on  typical classroom assignments, a small group of kids who spoke little or no English were segregated into a long table where we wore headphones and learned vocabulary words and the correct pronunciations for them.  All except one child were immigrant children with limited English.  Michael Kroenke, whose name I never forgot, was the only caucasian student in our group and I am not sure why he was with us as he spoke fluent English.  I remember him being a very scrawny, skinny and a soft spoken little boy who always had a runny nose.  His clothes were not always the cleanest and his straight limp hair was usually oily .  He had a funny way of speaking due to his two buck teeth and he was usually seated next to me.  I considered him a buddy who I used to tease and he would do the same to me and we both laughed at our own shortcomings. I am assuming he had a learning disability and this was the only setting the administration could place him.  Maybe there were no appropriate programs for a child like him and he was just stuck with all the kids who didn't speak much English.  I think he was the first child with a disability I came across but didn't realize at the time.  In junior high school, I found out he had an older sister named Valerie who was intellectually disabled.  When she walked across campus, the cruel boys would jeer, laugh and make fun of her and although delayed in many ways, I think Valerie knew she was being ridiculed and often times she would loudly sob like a baby which made the boys laugh even harder.  I felt so bad for her but did nothing to reach out to her and neither did any of my classmates. We only saw her in passing between recess time as she was segregated into special classrooms where we had no interactions.

Once, I ran into Michael, Valerie and their parents at Sears and I remember feeling so much pity for them even as my own childhood was pretty crappy and pitiful.  The family looked poor and the parents seemed a bit "off" themselves and I wonder now if whether they had mental health issues. I remember feeling pity for them but also feeling glad and relieved that they had each other to lean on.  I wondered what it must be like to be them: to be made fun of, ridiculed, not respected, poor and vulnerable. And, I wondered if there were people who saw me, a marginalized, minority immigrant kid who spoke little English, just as I saw the Kroenke family.  On occasion, I wonder what ever happened to Michael and his family and I pray they are safe.

In junior high, I had a classmate whose sister had cognitive delays and she would have frequent tantrums, headaches and maybe even seizures.  She went to a special school but once I visited my friend at her house and I saw how awful it was when she had one of her spells.  I felt sorry for her mom and felt embarrassed for my friend.  I never showed much sympathy for her as I was a self absorbed and ignorant junior high kid -  not that I was ever mean or overtly disrespectful but I tried to distance myself from her in fear that associating with the "uncool" people  would hurt my chances of ever being "popular" or at least accepted; and being accepted by my peers at that age was a very big deal . I realize it was stupid, childish and even hurtful and I cringe at myself when I think of how shallow I was as a teenager even though I was being influenced by other "friends" whose acceptance I so badly wanted.  In my heart though, I knew there was something not right about the world, those jeering kids, my group of friends and the pressure I felt to fit in. I don't remember anyone from my first grade but I've thought about Michael and Valerie on and off for years and even do so to this day.


 Through that experience and reflecting back on those days, I have a greater compassion and  understanding for people who are oblivious to their own hurtful actions or words shown out of ignorance.   We are all at different levels of understanding and no one can make anyone learn anything.  Wisdom, insight comes as a result of experience and maybe that is why God brought us into this world; to gain wisdom and insight through our varied experiences; the sublime, the mundane, the grotesque, the tragic and everything in between.  What I realize in hindsight is that nobody will every judge my stupid actions or thoughts as harshly as I judge myself, not even God.  When I encounter people who abuse or belittle others, I cringe at the thought of what their own judgment of themselves will be like once they achieve a higher level of understanding, either in later years or at the pearly gates, I have compassion for them because I know how uncomfortable that can feel.

"Forgive yourself for not knowing what you didn't know until you lived through it. Honor your path.  Trust your journey.  Learn, grow, evolve, become, heal." -unknown


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Monday, June 3, 2019

Disability Advocacy and "Scaling Down"


Where's Luki?


 Advocacy for my son and his disability comes by way of making sure IEP goals are appropriate for him at school; enrolling him in summer programs as those offered through AbilityFirst where kids of all abilities are encouraged to swim, explore the community and make friendships; making sure our family gets in home supportive services, acquiring MediCal benefits so that he can get diapers/medical equipment as well as be eligible for numerous other government benefits; and keeping an eye open for any programs offered through organizations such as the Regional Center that help him with social development and promote inclusion in the community.   I show love and support for my son by treating him with gentleness and making sure that he is fed, clothed, groomed, well rested and treated with love and respect, every day.  However, I haven't had much time, energy nor resources to tackle bigger and grander projects that help bring disability awareness and acceptance to a large audience.  I see so many amazing parents of special needs children doing grand and laudable things like launching an international support organization, serving on the board for these organization, raising thousands of dollars through fundraisers, establishing media empires for those with disabilities or opening adaptive play gyms as a business, and I feel a bit inadequate and wonder if I am doing enough to support my son and promote the Dup15q community.


During my one year study abroad at the University of York, England in my senior year of university, I remember taking the train to a more metropolitan neighboring city, Leeds, to do some weekend shopping.  On the train, I encountered a small boy with Downs Syndrome around the age of 10 accompanied by someone who may have been his grandmother.  They were so happy and excited to be going somewhere.  Were they going to a party? Or, to meet a long lost relative or friend?  The lady didn't treat the boy badly or differently in any way which I thought would be the case.  I remember thinking how beautiful it was to witness such an interaction because up to that time, I had always imagined living with a family member with an intellectual disability as being full of sadness, shame, disappointment and unhappiness. How can one possibly have a happy and fulfilling life when one can't achieve any of the good things that society deems good/ successful/ beautiful?   Peeping into that beautiful moment in the bus opened my eyes to how happy and excited one can be despite living with a disability that society defines as being shameful and sad. It showed me that intellectual disability was nothing to be fearful of at all and that meaning to any experience comes down to how one sees a situation. It made a far greater impact on me than any celebrity who speaks to thousands of people to bring awareness and charity to a cause.


I am reminded of Charles Eisenstein who wrote a beautiful essay on the importance of doing good deeds on small levels without there being great fanfare, pomp and circumstance. Click here for link to essay:  Scaling Down


  He said doing things on a small scale was just as important as grand and ambitious projects done to earn fame and fortune.

"The logic of bigness devalues the grandmother spending all day with her granddaughter, the gardener restoring just one small corner of earth to health, the activist working to free one orca from captivity. It devalues anything that seemingly could not have much of a macrocosmic effect on the world. It devalues the feminine, the intimate, the personal, and the quiet." -C.E.

"When I focus on the small, intimate realms of life, taking the hours to tend to a relationship, to beautify a space, perhaps, or to enter the timeless child’s world with my youngest son, I am subject to an unease along the lines of, “There is something more important I’m supposed to be doing.” The logic of bigness devalues the very heart of life." -C.E.


I hope he is right.  It would relieve me of much guilt and feelings of inadequacy.  Just knowing that as I cuddle my boy or play with him in a gentle and kind manner with no one to witness the act is just as meaningful as reaching thousands of people through celebrity or ambition.

 "For me, scaling down implies a kind of trust that it is OK to do just this, right here, right now. Letting go of controlling the macroscopic outcome, action becomes a kind of prayer, a kind of aligning oneself with the world one wants to see." -CE