Unreasonable Canadians: Judith Snow

As part of the 31 for 21 challenge, every Wednesday during October I am celebrating an unreasonable Canadian who has inspired me with their courage and vision—through their writing or their advocacy for a world where all are welcome, and safe! Today I celebrate Judith Snow.

Judith is so unreasonable, she dared to break out of a long-term chronic care institution with the help of a group of friends that evolved into a unique circle of support known as the Joshua Committee, and went on to pave the way for individualized funding for attendant care, get an MA, advocate for inclusion and change, teach and mentor families and individuals to name and reach their dreams of living in community, have a play written about her, go kayaking,  become a visual artist, and in her most recent incarnation, start a unique visual arts program called Laser Eagles.

"Red" copyright Judith Snow, http://www.lasereagles.com/assets/thumbs/d90aa_judith_red_8x10.jpg 

I first met Judith at a week-long institute on inclusion at McGill University in Montreal, when Jessie was only two years old. Judith held me spell bound and in great awe as she shared her vision, her acerbic wit, and her sharp, and I think brilliant mind with those of us gathered from around the world to leran more about inclusion and to support each other in the journey. 

Find out more about Judith by reading any of her provocative and insightful writing. What she is saying is so simple (listen) and radical (listen with your full attention). 

Creating What I Know About Community 

The Quiet Voice  

Stories andHealing 

Or order Behind the Piano and What’s Really Worth Doing and How to Do It from Inclusion Press. Circles of support and person-centredplanning really started with Judith. So we owe this highly unreasonable Canadian a great debt!

31/21: Unreasonable Canadians: Dave Hingsburger

As part of the 31 for 21 challenge, every Wednesday during October I am celebrating an unreasonable Canadian who has inspired me with their courage and vision—through their writing or their advocacy— for a world where all are welcome, and safe! Today I celebrate Dave Hingsburger.

Dave Hingsburger is so unreasonable, he insists on seeing people with intellectual disabilities as sexual beings. He educates them about healthy relationships and abuse prevention, and gives them the tools and training to educate each other.  

A renowned sexuality consultant, author, lecturer, trainer, speaker, and daily blogger, Dave travels the country and the world empowering people with intellectual disabilities; training the people who support them to honour and teach self-determination and health boundaries; and advocates, designs, and delivers abuse prevention and other workshops that continually sell out. He also works providing direct service to people with intellectual disabilities—as a consultant for schools, parents, and agencies and the Sexuality Clinic at York Simcoe Behaviour Management Services—and is the Director of Clinical and Educational Services for Vita Community Living Services in Toronto. 

Dave writes on many topics and has a keen eye for injustice and stupidity. He also notices some of the simple interactions that make us all stop and rethink our assumptions. He celebrates being and challenges us all to notice the world with a bit more passion, compassion, and outrage. While I have many favorite blog posts, my absolutely most ever favorite about Down syndrome is one that I think should be required reading for all parents. I have his permission to reblog it here, but you can go to the original here or bookmark his blog here. Thanks Dave!

Down Syndrome, Off The Clock by Dave Hingsburger

They make, if not the best, a very serviceable eggplant parmigiana. We don't go there often, but when we do, we each always get lunch from the same vendors. As they are at the start of the food court, we grab a table right at the entrance. It's perfect for people watching, eavesdropping and is almost always the source for amusement. The parmigiana comes from the vendor right at the start of the court, Joe gets soup from the vendor next door but one. I grabbed a table just two in, with a chair removed, there is enough room for me to pull in and be out of the way.

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

(Realize that I would have listened irregardless of the boy's Down Syndrome. I would have listened if it was a couple having a spat, if it was a businessman mumbling to himself, if it was someone having an animated conversation on a cell phone. That's what I do.)

So, aside, aside, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

On our way home, chatting about just stuff, I realized that at that moment I didn't feel disabled, it wasn't part of my consciousness. I knew that everyone saw me in my wheelchair but what they saw, what they thought, didn't impact what I felt. I'm only disabled sometimes, when things are out of my reach, when aisles are too narrow, when a curb blocks my way. The rest of the time I'm just - me.

31/21: Unreasonable Canadians—Jean Vanier

As part of the 31 for 21 challenge, every Wednesday during October I am celebrating an unreasonable Canadian who has inspired me with their courage and vision—through their writing or their advocacy— for a world where all are welcome. Today I celebrate Jean Vanier.

Jean Vanier  was so unreasonable, in 1964 he dared to welcome two men from an institution for people with intellectual disabilities to live with him in a little home he called “L'Arche,” after Noah's ark, in Trosly France. This small act of faith and daring was the beginning of L’Arche, a movement that grew quickly as this new way of sharing life together in community with people who would otherwise be shut away in institutions attracted many young people. And Vanier himself began traveling and speaking about his own life-changing experience of coming to know people with developmental disabilities. Today, there are 130 L'Arche communities in 30 countries on six continents.

Born in 1928 in Switzerland, where his father was serving as a Canadian diplomat, he is the son of Governor-General Georges Vanier and Pauline Vanier, hence he is a Canadian and we are proud to claim him! Maclean’s magazine (September 4, 2000, p. 33) writes about Vanier: For nearly four decades, Jean Vanier has travelled the world fashioning a network of homes where people with developmental disabilities, volunteers and a sprinkling of staff live together in community. “Those we lock away and think worthless,” he says, “have the power to teach and even to heal us. We are all ‘broken’ in some way,” he believes. . . . “When you start living with people with disabilities,” he says, “you begin to discover a whole lot of things about yourself.” He learned that to “be human is to be bonded together, each with our own weaknesses and strengths, because we need each other.” Tall and stooped, Vanier radiates the strength of a man who has fought his own inner battles and surfaced with peace.

Vanier has written many books, including Becoming Human, Finding Peace, Made for Happiness, Encountering the Other, and Befriending the Stranger, and a wonderful refection that is pure poetry, Drawn into the Mystery of Jesus Through the Gospel of John. He has won many awards, but is mostly a kind, humble man filled with a gentle spirit and great insight into what it means to be fully human. His faith certainly unpins and drives his life, and yet there is something so open and inviting that even those without any named faith are drawn to him. His teeth are crooked, his eyebrows now wild, but his heart, I think, is as straight and true as God makes them.

In his introduction to Our Life Together: A Memoir in Letters, he writes:

People have described L’Arche as a radical movement. It was born in the mid-1960s when many young people, including myself, were looking for something different, searching for something to follow other than the ladder of material success and individual accomplishment. Choosing community life and a life among the poor may have seemed strange or radical, but to my mind it was radical only in the sense of the word that means “touching the roots,” the roots of our humanity.

L’Arche is rooted in love. We live in community with those with intellectual disabilities because as human beings we seek naturally to love and be loved: each of us wants relationships where our value as a person—with our frailties and poverty—is recognized, affirmed and celebrated. Each person, whatever his or her abilities or disabilities, strengths or weaknesses, is important and sacred. This idea is not unique to L’Arche, and it’s not new or revolutionary! It is the Gospel message. It is the essence of what it means to be human and to be Christian. We discover how we can be healed by those who are the most vulnerable. It’s not a question of going out and doing good to them; rather, receiving the gift of their presence transforms us.

I’ve never really considered myself a radical. I’m trying to live the Gospel message as best I can, and I hope always to be touching the roots. One of the strengths of L’Arche is that on the whole we are loved by many people. We are seen as being with the poor and the downtrodden. We are seen as a place of mutual trust. In L’Arche we trust each other: people with disabilities feel trusted and allowed to be and to grow, and feel that they can do things and work things out; and assistants, those who come to L’Arche to live with the disabled, learn to accept and to trust themselves in all that they are. Trust is founded on the belief that you are important, that you are precious.   

31/21: Unreasonable Canadians—Norm Kunc

A number of years ago, when I was working on a training program for youth advocates promoting healthy and active living for people with disabilities, I came across a great resource developed by Advocating ChangeTogether (ACT). One of their units was based on the quote by George Bernard Shaw (excuse the male-centric, and more than just slightly human-centric language):

The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore, all progress depends on the unreasonable man.

The point was to show self-advocates why they needed to be “unreasonable” to change systems and advocate for their rights. ACT gave great examples—such as Rosa Parks, who was so unreasonable that she wouldn’t move to the back of the bus and give a white person her seat; and Ed Roberts, who was so unreasonable that he thought he had a right to go to college even though the University of California told him “we tried cripples and it didn’t work.”

I think we all need unreasonable role models and need to make sure that our children know that they have every right to question authority; that compliance is not the always the gold-star expectation (more on that in another blog post). Here in Canada, where in many ways we are behind our U.S. neighbours in terms of entrenching disability rights into law, we have a great and wonderful tribe of under-celebrated unreasonable people. People such as Norm Kunc, Jack Pearpoint, Judith Snow, Jean Vanier, Dave Hingsburger, Bonnie Sherr Klein, Alan Shain, and Catherine Frazee (to name a few) who are recognized internationally for their insights and work advocating for disability rights and inclusion.

During October, I will share a few of my favorites with you, hoping that bits of their thoughts and writings will challenge and change you, as they have me.

I’d like to start with Norm Kunc, whose writing challenged me to think completely differently about inclusion and “helpers.” Particularly his articles Integration: Being Realistic Isn’t Realistic, where he moves just slightly outside the dominant narrative to show why advocating for integration based purely on “reasonable” arguments just won’t work and does a great disservice to each individual and community of learners; and Hell Bent on Helping—Benevolence, Friendship, and the Politics of Help, where he deconstructs the relationship between those helping and those who are supposedly being “helped.”

Norm and his wife Emma Van der Klift have been working together for more than 30 years, advocating for the rights and full inclusion of people with disabilities in schools, workplaces, and communities. A number of years ago they produced a powerful video that I used for many years in workshops and school meetings.

I dare you to watch this video and not be changed radically—in the true sense of the word, right at the root. Be patient. Watch it. Sit with it. And let me know what you think.

A Credo for Support