Tuesday, October 30, 2012

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). 

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: Thankful Tuesday: 'Tis People, 'Tis People


This is Tuesday, so I am joining in the Thankful Tuesday party over at Micha Boyett’s blog, Mama: Monk . These thankful Tuesdays are the just the kind of weekly discipline I sometimes need to shake me out of the cave I occasionally hole myself up in. Like the discipline of meditation, the discipline of being thoughtfully thankful has its own sweet blooming, no matter what you plant or subsequently feed it. So , having emerged from under the dark duvet and having secured the flyable items that are potential storm projectiles, I am sitting down here to focus on the graces and blessings that I think I missed being thankful for this last week. Mea culpa. Alleluia. We are indeed an Easter people!

And I am grateful especially for:
  • Our local Down syndrome association, which hosts the most amazing annual general meeting and dinner dance where everyone is full fed (for free, both cash and gluten) and loudly served the hottest dance music that keeps everyone—from the tinnies to the grandparents—dancing. 
  • The fulsome tribe of DS mamas and their wry edgy humour and bear-like love of their babies, even when they are babies no more and are exploring where their raging hormones are leading them. These mamas who laugh and share and snark and gently correct the clan of adolescents at the table, while nodding vigorously in recognition at some tale of poor or sketchy mothering. Who, in nodding, give new breath and energy to the going forward, to trying new strategies, and most importantly to laughing at our own foibles.
  • Parents of the young dancers taking Kids Propeller dance who come to Jessie’s defense when she arrives late and we complain, a bit, just a bit, about her lack of responsibility. They all, each and every one of them, share small stories, bits of her teaching that we never get to see or hear about, that demonstrate her care and growth in that role. The ways their children relate to and love Jessie. The ways that she encourages this care. May all adolescents have such defenders and fans as they separate from their parents. 
  • My friend CG, who drags me out to small town Ontario to eat pulled pork in Irish pubs and sit in old leather-backed movie theatre chairs in a small theatre with an even smaller audience to listen to the compelling and richly plaintive voice of Lyn Miles singing sad coal mining and forlorn love songs. My friend who drives through rain with me and listens to me rant and whine and is still game for a conversation about God and churches and Greek philosophers and vegetarian cuisine. Who will read my blog and email me offering home and hearth and a place to work while the workers work on our house, complete with delicious dinner, including dessert and maybe even candlelight if the power goes out. Who also throws in reassurance that my daughter will in fact be fine, will live a good life, and we will get to see that sooner than we think . . . and so she offers me comfort in all the broken bits and places that need a bit of tenderness. So I am immensely grateful for my tenderizing friend, CG.

That, I realize, is a lot to be grateful for, and more than reason enough to crawl out from under the duvet. So. What are you thankful for?  

Monday, October 29, 2012

31/21: Bittersweet


Yesterday’s Retro Jessie postwas bittersweet. In typing it up again (the whole series was done on a different and incompatible computer system), the irony of re-posting a letting go piece from 1996 just when we are struggling with that same process right now, left me deflated and somewhat depressed. Perhaps, if it weren’t so close to Halloween or the days were lengthening instead of taking on those long November shadows, the reposting would make me laugh, or just refocus me on the love part.

Instead, my sadness was fed by a Sunday morning sermon on Job and a car full of CDs by women singer-songwriters with dark and love-lost stories of loneliness and aging regrets.  I came home, went to bed, and pulled the covers up over my head. I let my family fend for themselves (I think this made them happy) and in my head argued that I was regenerating positive energy. Or not. Whatever.

Let us just say that there are points in the transition years where I have no idea whatsoever about what we are doing or where we are going. While there is the Jessie-defined North Star—a clear and welcoming vision of a bright and loving future—the getting there is a very bumpy ride with many detours and sinkholes and one-lane reductions. I am very slow at learning what I am supposed to be learning (and obviously have not learned it yet). I know it has to do with letting go, and letting go again, but I also know, because it is Jessie, it has to do with support, and that particular mix for an adult achieving independence is a particularly tricky concoction. 

Oh I wish we still had that Harry Potter potion maker that Jessie got one Christmas, and that in addition to elixirs of life, polyjuice potions, and veritaserums, there was a nicely package potion for parenting into adulthood. But, alas, we sold it at the last garage sale and I am not sure we had any potions left.   

At heart, this transition bit makes me see just how much I struggle with loving and letting go. And I read about other families going through a similar process and find them all so much more, well, positive. And energetic. And loving. And witty! Oh I long to write about this period with wit and humour and good grace. But mostly I just yell. Or answer cell phone requests for redirections after getting on the wrong bus. Or drive to pick up said lost traveller.  

So, for today, I will not detail the yelling Saturday morning we had trying to let natural consequences reign, but will leave you with the only photo we managed to take at the previous evening’s Down Syndrome Association’s annual  general meeting—which is a wonderfully attended dinner dance (free for members!) for families and friends of all ages. 

Jessie and drummer boy sat at a table of more than nine young people their age, and we had to drag them away at the end of the evening. It was a Halloween theme; I can’t remember exactly what drummer boy and Jessie were, except that there was some underlying punk theme. I will post another time about having to read the riot act about dirty dancing at a family dance.      

Sunday, October 28, 2012

Retro Jessie: Life With Jessie 11: Falling in Love Again [fall 1996, 6 years old]


The last of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98 and re-shared here as part of 31 for 21.

I’m still reeling from the expanse of a full day before me, trying to adjust to Life Without Jessie, since Jessie is in grade one and at school all day. I miss her more than ever this fall because something wonderful happened over the summer. I fell in love with her all over again.

You know, the terrible twos lasted a long time for us. About four and a half years to be exact. And while my love and delight in Jessie never stopped growing, it certainly hit a number of rocky patches. Patches where the thought of waking up and battling over getting dressed, or walking to school, or brushing teeth just made me want to stay in bed. But this summer I can honestly say I finally reached a point where I found her persistence admirable.

It has allowed her to learn to swim, to get on the swings by herself, to talk to other children, to continue to try to play tag and hide and go seek when she can’t quite keep up. And this summer Jessie and I were actually able to do things together without either of us insisting on going in different directions.

Perhaps it’s because she has the skills to be more independent now and doesn’t need as much support—she can get most of her clothes on by herself, get her own breakfast, look both ways before she crosses the street, answer the phone, get out her paints  . . . she doesn’t always have to ask for help or have me in there interfering in her life. Or maybe it’s because I eased up this past summer.

Not by choice, mind you. I had grand plans: swimming lessons, summer camp, reading, writing. We were going to get a head start on grade one and really work on developing friendships. We were going to have a “productive” summer.

But just as our productive summer was about to start, my aunt began to lose her battle with cancer. My Aunt Kathy. I don’t know how to describe who she was or what she meant to me, except to say that she was a perfectly ordinary woman with an extraordinary impact on my life. She loved me. But I mourn the space that her dying has left in Jessie’s life. A space that has no real meaning to Jessie, but that strikes me hard and at awkward moments. Jessie needs people who just love her. People who will continue to love her and support her through the different stages of her life. And Kathy won’t be one of those people, which is unfortunate, because Kathy knew how to love unconditionally. That was one of her gifts.

So this summer I spent as much time in Montreal as I could, needing and wanting to be with Kathy and our extended family. Trying to give back a small measure of what she had given me, and scrambling to learn how to love as she did.

When I was at home in Ottawa, a bit dazed and saddened and thinking, that way that you do when you are losing someone you love, about life, I found myself watching Jessie. Not with eagle eyes, but with open curious eyes as she splashed and giggled and did tricks in the pool, or as she transformed herself into a princess and demanded that I be the frog. “No, not that way. You have to hop Mom.”

I listened as she tried to join in on conversations with other children and invented a brother and a sister that lived with her in her house. “A long, long time ago my brother and my sister . . . .” And instead of seeing the falseness of her conversational offerings, I was impressed with her ability to understand that she had to share something that was on topic, which, in this case, happened to be siblings. Searching for something appropriate and finding only what her imagination could conjure up, she boldly offers it and waits for a response. I don’t intervene right away because I don’t want to interrupt the flow of the conversation, the back and forth jangle of 5-year-old banter, in which my daughter is an active participant.

It felt so good to watch her get excited by the prospect of a new day, of going to the pool, of painting , of having a friend over. It felt so good to watch her being happy. I had forgotten, in our struggles over process, just wat a joyous, curious, excitable, perceptive, and creative child she is. I hate to admit it, but I had forgotten to let her be happy, to let her be. And Kathy’s dying made me more aware of just how important it is to be.

The summer passed, not without pain, but certainly with a lot of love.

Jessie drew many pictures for Kathy. Pictures that surrounded her at home, in the palliative care unit, and when she died. Pictures of family, of birds and sunshine and rainbows. The last picture Jessie drew for her was done in bright green paint—a picture of Kathy in bed in the hospital. And beside her she drew pictures of all the things that she thought Kathy would like with her: “Toys, a book, coffee, a ball, and you and Grams. She would like you and Grams to be there. But oh, there is no room . . .” and she pointed to the full page and looked at me with disappointment as she struggled with how to get two more figures on the page. “That’s okay,” I said. “Our spirits are with her.”

While Jessie might not have known exactly what those pictures meant to all of us, she certainly put her heart and her love into them. I was reminded, between Kathy and Jessie, that the most powerful and enlightening force is love.

I fight for Jessie. I advocate for her. I speak to doctors and students, I sit on committees, I stay up late reading and stay out late at meetings, I find resources for teachers, I struggle with existing systems and for changes to the system . . .  because I love my daughter Jessie. That is the underlying force, the ghost in the machine. Sometimes I forget why I’m doing all these things, and they take on a life all their own. Sure, they’re all noble and challenging commitments, often they’re necessary parts of planning for Jessie’s inclusion. But this summer I began to realize that if all these other activities only lead me away from loving Jessie, from having Jessie know and feel that love, then I’ve got to stop doing them. I get tired of having to struggle and be polite and find ways to support the people who are supposed to be supporting us. I get tired of being an advocate and want to shout, “Just let me be a Mom!”

Jessie loves grade one. She gets off the bus smiling, ready to play or paint or do homework. Happy to see me, but also happy because school has been such a delight. She proudly shows me her home reader and says “We have homework” then she pauses and looks at me “What’s homework?” As I explain it to her, I realize that she has been doing homework all her life. It’s time to play. To follow her lead and delight in the messy black paint we are using for the witch’s tower she has created or to act out, once again, the story of Cinderella.

This morning on the way out the door to school, Jessie and I pause for a moment on the front porch. The wind chimes that Kathy gave us tremble and gently ring in the cool wind. “Listen Mom. It’s Aunt Kathy’s spirit,” Jessie says with joy and delight. And I think about how much I miss Kathy, and how much I miss Jessie. Sometimes you have no choice but to let go. And it’s only in the letting go that the joy and delight shines through.  

Saturday, October 27, 2012

Retro Jessie: Life With Jessie 10: Happy Endings [1996, 6 years old]

Part 10 of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98 and re-shared here as part of 31 for 21. The series will be re-shared and posted here on the weekends through the month of October 2012, as part of the 31 for 21.

Jessie is six years old. She has lost her first tooth, can write her name if you help her with the s’s, mastered the tuck jump, told me to change my attitude, and is learning to read.

One day last month, as we were approaching the school yard, Jessie looked up at a street sign and stopped. “Mommy. Look. I know that word! It says school.” She beamed from ear to ear. “School. I know that word!” She had stopped underneath the sign that said “School Bus Loading Zone” and the delight in her eyes mirrored a sudden revelation that she could read not only the word, but the world.

Nothing, however, quite matches my pride as I watch her learn. She has a sight vocabulary of at least 100 words and we just moved into families of words: the “at” family, as in cat, hat, mat, and bat. What amazes me is her ability to play with word order and meaning. The unrestrained delight in her eyes as she turns a simple sentence into a silly one by switching one word and then waiting for me to laugh.

I spend my evenings cutting out pictures, writing words in bold black print, creating books, and making up games. That Jessie would read was never a question, at least not in our minds. Our house is filled with books and if any child had it in her genes to read, it would be Jessie. Reading and writing is what both Dan and I do for a living (if you could call it that) and for sheer pleasure. But I never thought it would be this easy or this much fun.

Some people would say, well, ya, sure, but she’s high functioning. I’m getting tired of that phrase. Sure, integration works for her because she’s high functioning. High functioning . . .  just exactly what does that mean? Sometimes it means that it’s more difficult for other kids to figure her out. Because at six, kids are into mastery. Who’s better than who. And there’s a general order that they have figured out that is closely hooked to age. When you lose your first tooth, when you turn six, all these rights of passage are tightly tied to the ability to do something. To read, to ride a bike, to draw a figure, or write your name.

Pushing Jessie on her tricycle the other day we met Tim on his two-wheeler. “Why are you pushing Jessie?” he asked. “Because she’s just learning,” I replied. Tim looked at me for a moment, then up at his Mom for support. “She can’t ride a bike? But Jessie is six!” This is inconceivable to him.

If Jessie were just always behind, if her effort and difference were just a bit more pronounced, I sometimes think the other kids would have an easier time of it.

“How come Jessie can read?” asks Tess one day at our house. She was a little put out because she’s used to being better than Jessie at most things. Having finally figured out that even thought Jessie turned six before she did, Jessie was really like somebody a bit younger, she now had to reassess her whole world because Jessie could do something that she couldn’t. I could see her little face struggling with this new view . . .  exactly where, then, did Jessie fit in? That is the million dollar question, and the best “educational opportunity” any of us will ever have.

For Jessie continues to be an enigma, a child who is and is not a peer. She knows her colours in French better than most of her classmates, can recognize a variety of birds, can read many of the signs around the classroom, but she can’t  ride a bike, doesn’t run very fast, and still grabs toys as a way of getting attention. She can, however, do the “Macarena,” a kind of line dance that’s a bit hit in the school yard. And while the Macarena might never show up on her IEP, it’s an important part of her education. An education that she could never get in a segregated setting.

The hard part is not so much in the day-to-day things, but in the things that go on outside our immediate lives. The undercurrent of cutbacks, legal battles, dealing with therapists, preparing for grade one, making myself clear.

There is an air of desperation these days, that makes me very nervous. People are losing their jobs, school boards are claiming that they can’t afford the services our children need. Never mind that integrating children into their neighbourhood schools actually costs less than putting them in a segregated setting. Parents are being told that their child can get an integrated placement, but they can’t promise any supports. But without supports it’s not integration, its dumping.

Jessie would never survive and thrive the way she is without supports. I am so proud of Jessie, of her classmates and her teachers, and of the school community. But there are moments when I get this weird vision that Jessie and others like her will only be this weird blip in time, this strange generation of kids who grew up and went to school together and learned something about meaning and value and caring. I shake my head and clear my eyes. I cannot believe that what we’re doing in not right, is not a step forward, and I can’t bring myself to think that at some point Jessie or the children following her will be forced into segregated settings. Settings that maximize their difference, that deny them the day-to-day opportunity to make friends, to feel good about what they have to offer the world. It’s not that we don’t struggle with how she fits in, it’s that we’re taking the chance to figure it out. Whitout that struggle, we would not have the moments that make it all worthwhile.

The best moment, the moment I would trade all others for, is the moment when, hidden in the closet behind a sheet and amongst the pillows and stuffed animals that I was ordered to supply, Jessie and Claire got the giggles. Singing funny troll lullabies in their own imitation of how a troll would sing, they began to giggle with each successive phrase as each one topped the other in silliness. Nestled there among the pillows in the dark cave of the closet, they wriggled and giggled and I stood quietly in the hallway, holding that moment to my heart. They are so few and far between and I want, more than anything, Jessie and her friends to know what these moments feel like. Moments of connection and delight. Moments when Jessie’s sense of humour and playfulness are appreciated and treasured.

That night, as I was tucking Jessie into bed, she turn to me and said, “Mommy, I like happy endings, do you?”

I do Jessie, I do.

Jessie and Claire went through elementary, middle, and high school together. Claire received funding to do a documentary about Jessie, and has gone on since then to study film in Toronto. Here is a link to this first short documentary, done in 2007.

  

Friday, October 26, 2012

Jessie Flips: About Being in a "Regular" Class


Two weeks ago Michelle asked: “. . .  I have a question for you about when you were in the regular education classes—aside from how the students treated you at times, how did you yourself feel sitting in the regular education classes? Was the work too hard? Was it over your head? Did you understand what was being taught? Did you have modified work? How did it make you feel if you weren’t doing quite the same work as your classmates? . . . I’ve been told that during some of the time in the regular classroom the teachers/administrators feel like since the work is too hard for her right now and she’s not doing 3rd grade level work, that it’s just making her feel bad about herself and as she gets older will cause low self-esteem."

Hi Michelle this was a great question I’m glad you asked. Here’s my answer:

In the regular education classes I felt fine and comfortable. Sure, the school work was hard but I had asked them to adapt the work to my strengths and to my level. The work was exactly the same they just modified it. And it actually made me feel like I can learn. It really helped me a lot. And I learned a lot of new things. I remember in Geography class in high school, we were learning about different kinds of rocks and the work wasn’t adapted so I raised my hand and I asked my teacher to try to adapt the work to my level. Then the next day in class we all used all sorts of visuals that my mom had made to help me learn, and it was really fun. 

This should NOT make you have low self-esteem, or make you feel bad about yourself, you need to adapt the work and if they can’t do that then what you should do is to fight for it. And if the work is too hard try to strike up a compromise where your kid / child can learn. And if they have quizzes or tests then you can use those regular pullout sessions to the resource room as extra time for your kid or child to finish the quiz. Then when they’re done, your kid or child can go back into the classroom.  Your child or kid is learning. No child should be denied the adaptations to learn. They need to learn. They have the right to have an education.

In a segregated classroom it’s hard to learn, in a segregated class you’re not really learning and you’re not really making new friends, and your separated from your friends that you grow up with and play with. But in a regular class you are learning, in a regular class you are making new friends and being with your old friends. In a regular class you feel a sense of belonging and being connected with all the students. In a regular class you work all together. Other people can learn from your strengths and gifts.

Nancy’s says: if they are saying the work is too hard for her, then they have identified what they have to do—modify it! The first response should be modify, not remove. Inclusion is NOT and never has been about everyone doing the same thing or working at the same level. 

This seemed to be something I had to reiterate with Jessie’s teachers: OF COURSE she won’t be doing the same level work in every area. She is not in a classroom with her peers because I think she is exceptionally bright or because I think that she doesn’t have an intellectual disability. She is in a regular classroom with her peers because I think that is the best place for her (and her peers and her teachers) to learn and to create a learning community. 

The bottom line is that including all students teaches all students (those included and their peers) that all persons are equally valued members of this society, and that it’s important and worthwhile to do whatever it takes to include everyone because everyone has something important to contribute. There are always exceptions and variations, but I think the starting point has to be inclusion. And inclusion only works when we accept that we have diverse learners in our classrooms and diverse people in our society. 

I think being fully included all the way through school gave Jessie two key qualities: resilience and a very strong sense of herself as a valued member of a community. While you could call it self-esteem, I think it goes much deeper and stronger than that and is related to her place in the world. 


Thursday, October 25, 2012

LWP Is PDG


Today was our appointment with Allison from LiveWorkPlay. This is Jessie’s Takeover (I wrote “take on it” but she changed it, fittingly, to “takeover.”)

Today at 1:00 in the afternoon, I had a meeting with Live Work Play’s Allison Moores. Allison talked a little bit about what LiveWorkPlay is and then we moved on and talked about my goals and dreams for my life now and for my future. My main goal and dream that we had talked about was moving out into a supported living setting where I would live with my friends.  And through that she had told my mom and I about how Live Work Play would help me and my family to help carry out the supports to help me achieve that goal. It was really fun and I really loved it. I’m finally really excited about what’s happening.

So. We get to move forward with a bit more support. A chance for me to back off and for a mentor/advisor/person to step in and work a couple of hours a week with Jessie, setting goals based on her dreams and helping her find the supports and strategies to be able to move forward. That means its someone else who gets to help her delve into the world of making choices, setting goals, and following through. That’s a big sigh of relief (for me) and a huge vibrating grin (for Jessie).

Relief for me, because I feel like a load is being shared, and while Jessie has a good rich and active life right now, there are areas that need to be explored further (education, career, a home) and I’m just not the right person to direct and drive it.

A huge vibrating grin for Jessie, because she gets to share her vision with someone who won’t roll their eyes when she sets her long-term living goals as moving to California with her boyfriend so he can pursue his wrestling star dream and she her acting dream. Someone, she likes to say, who is her personal assistant. Well, we’ll see how that works.

But, we have all agreed that the goal will be moving out (target=before she’s 25) and that the focus will be on all those things that will help her achieve that goal (anything from organizational skills and meeting and talking with people who have moved out and are living with friends or on their own, to researching areas in the city to live and budgeting).

We will meet again next week and Allison will bring Lisa, the person who will be supporting Jessie. In the meantime, we fill out forms, brainstorm more ideas and questions, and step back for a moment to breath and give thanks.

So. LWP (LiveWorkPlay) is PDG (prettydamnedgood). It is a work in progress, but with LWP I’m feeling a bit more hopeful about the progress!        

Wednesday, October 24, 2012

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!


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.

Tuesday, October 23, 2012

Thankful Tuesday: Hitting Empty


It was a long weekend. A weekend that ended in me “quitting” my job as organizer, driver, reminder, finder, money lender, food maker to my lovely daughter with something extra, which, during these transition years, seems to be mostly attitude. By Sunday night, I am afraid, I had let her reduce me to tears. There is not much that can reduce me to tears, but my daughter has always been able to find the right combination of obstinacy (on better days, persistence) and mess (on better days, creativity) that will do so. 

I am never proud when I quit (as you can see, I’ve done this before), because I know it won’t last very long. It’s just a last-ditch effort to get a measure of compliance (about doing chores, cleaning up, following through, completing tasks, honouring commitments) or even just a smidgeon of respect. I would never go as far as to expect thanks. Because I am, after all, a mother of a twenty-something year old daughter and we mothers of children of that age have to forgo gratitude (except from fathers/husbands/other mothers/family members) for a number of years as a kind of Buddhist test of detachment. Or maybe it’s our tempting time in the desert. Whatever the metaphor or path, I pretty much suck at the transcendental part of it, and always seem to emerge bruised and dazed instead of transformed. I fear that I will be given the opportunity to do it over and over again until I get is right, and I’m not sure that will be in this lifetime.

And so this is what I began to write Monday morning as I thoughtfully tried to prepare for the Thankful Tuesday blog.    

“I am determined to pull thankfulness from me. Bit by bit, thread by thread, and hope that it is not my unraveling. 

I am determined to find thankfulness within me, underneath the dark place of tears and frustration that is my daily dwelling, and hope that this thankfulness is more than a trite platitude that will wither in the light of day and reason.  

I am determined to let go of this determination, and let all that is wash over me, let the psalms arise from my heart, psalms of joy, of pain, and be grateful that I know that there are psalms that I can let pray for me.”

And then the phone rang.

And I answered it.

It was Alison. Alison whom I didn’t know.  From LiveWorkPlay, an organization that supports people with intellectual disabilities to have a good life with a very person-centred and inclusive approach—saying that there was a spot for Jessie in their Foundations program.

And I laughed out loud and said, “Okay, who is this?”

And it was still Alison, from LiveWorkPlay, only now she sounded a bit confused.

And then I gushed, I think, and said “Really? Are you really sure?”

And when she reassured me that she was really sure, I almost hung up the phone in my excitement to share the good news with all those who love me and are worried about my sanity.

Now the back story of supports for people with intellectual disabilities in our region is rather long, but can be summed up quite nicely as: pretty meagre pickings (unless you have a lot of money and can pay for and create what you want). While Jessie has a good life, it is fraught with certain planning and funding challenges, particularly as much of what she wants to do (and is good at) doesn’t completely exist and needs to be patched together in increments by her parents, whom she resents because she has this burning (and, I keep reminding myself, natural) desire to do what she wants, her own way, without them telling her what to do.    

So, just to make sure you understand completely the miracle that occurred, Alison was offering Jessie a spot in their Foundations program—a program where ANOTHER PERSON would help to plan and support her transition from a school-based to a community-based life. It’s the OTHER PERSON here who is key (just in case you didn’t get the meaning of the caps). There will be a NOT MOM person helping plan, set goals, and connect with community (where she is very connected already, but needs some help managing all her commitments). Some NOT MOM helping her fulfill her dreams and goals, and maybe convincing her that following the actual steps in a recipe is a good idea, that adding events to your calendar is a good idea, that getting up on time so you can eat breakfast before you go to work is a good idea. Some OTHER PERSON drawing supports and community connections together to help support Jessie in her dream of moving away from home. Some OTHER PERSON (did I say that?) doing some of the things that I now do, and doing them with much more cooperation from Jessie, because that other person is not ME!    

As soon as I got off the phone, I called Dan at work and shared the exciting news.

“Look Nan, I know I make fun of it sometimes,” he said, “but do me a favour. Keep going to church.”

We meet with Alison on Wednesday.

In the meantime, I am continuing with the burnt offerings. 

Monday, October 22, 2012

Retro Jessie: Life With Jessie 9: Dancing at Dinner [1995, 5 years old]


I am ready for school to start. It’s been a long hot summer and I am tired. Tired of doing battle with a very stubborn 5 year old. Dan says she comes by it naturally and looks at me sideways in a knowing manner. Okay. Okay.

But my greatest fantasy is to wake up, see Jessie’s smiling face, say good morning, and have her say good morning back. Instead, the first words out of her mouth, to me, are “NO!” It doesn’t’ really matter what I say, I just provoke this automatic response in her. She has also taken to stamping her foot, turning her back to me, and sticking her noise in the air in an attitude of “you can’t make me do anything!” I am exhausted with my very concentrated efforts at patience and consistency. And when I lose it  . . .  well, I know what the Queen of Hearts in Alice in Wonderland is based on. That overwhelming and irrational cry of “OFF WITH HER HEAD” is a very good likeness of me around dinnertime at the end of a long, hot summer day.

I go to bed at night with parenting books trying to figure out my options. The most appealing is a long holiday by myself, which is just about as likely as winning the lottery. So I find solace in other mothers of five year old daughters. We remind ourselves that five is a difficult age as our daughters strive for independence and separation. We trade ideas on how to give them responsibility that they can manage without causing anyone bodily harm and brainstorm natural consequences. We all agree on one thing. When our daughters reach adolescence, we’re leaving home.

My biggest battle with Jessie has to do with her sense of time, or lack of it. As a toddler, I didn’t expect her to fully grasp the concept. After all, wasn’t it her job to explore every diversion between home and playgroup or the park? The double acorn, the crooked front steps, the feel of grass as you lie looking up at the sky and can’t  figure out why your mother is closing her eyes and counting to 10. Playgroup starts when you get there. Isn’t that the way the world works? Oh, if only it did. Any transition, any movement from one location to another could last as long as three or four hours if we went on Jessie’s schedule. And then she would miss so much—like school, playing at the park, and swimming lessons.

Jessie loves swimming. This summer she took lessons every morning and finally mastered this breathing thing. Fearless as she is in the water, flailing and grinning with wide open eyes, it has taken her a long time to realize that you take a big breath before you put your head in the water.

But when you finish swimming you have to get dressed and go home. Well, I guess you don’t have to, but hanging out in a locker room for a couple of hours every day is not my idea of fun. I guess I’m too driven, in too much of a rush to get on to the next thing. But I would like, just once, to be able to go from point A to point B without having to plan for each step in order to avoid a battle with Jessie over: getting out of the pool, getting into the locker room, not going in the whirlpool, getting in the shower, getting out of the shower, going to our locker without climbing inside very other locker (there are more than 100 of them), putting on each piece of clothing, and so on . . . One day I followed her lead and we got out of the locker room two and a half hours after her lesson. And while I’m willing to do this sometimes, there is no such thing as sometimes with Jessie. If you change the routine or don’t follow the well-mapped out plan and forget to be consistent you are right back where you started—prodding, reminding, ignoring, coercing, and on really bad days, yelling.

Sometimes I feel like giving up, but I don’t because I want, so much, for her to be independent, to do the things that she can do by herself. And the look on her face, when she gets her bathing suit on by herself or gets the paints out, is worth every one of my own personal battles with frustration, anger, guilt, and exhaustion.

This summer seems to have been extra hard on both of us, and when Dan comes home from work, I just want to go to bed with a good book and dissolve into somebody else’s world.

But dinner is the time for us to be together as a family, share moments of our day and reconnect. It’s  a time I would like us to savour and enjoy. It doesn’t always happen. We’re tired, it’s hot, Jessie wants to play trolls with Dan, and there’s Mom with this image in her head of the happy family around the dinner table.

It’s Dan’s turn to do battle with Jessie about staying at the table until she is finished. I’ve given up.
For the seventh time she pushes her chair back from the table and just as we are about to tell her that her place will be cleared, she says “I will dance for you.”

Dan and I close our eyes, weighting the consequences. We should say, “You can dance if you are finished your dinner,” we should be consistent, we should follow through. Instead, Dan turns up the volume.

We sit and watch Jessie dance. She sways and moves her shoulders and turns and pirouettes. Her eyes are half closed as she listens to the rhythm of the jazz and is moved by it. Some of her awkwardness is transformed into a delightful quirkiness that is both cute and very serious.

As I watch her dance in the fading summer light, I realize with a pang how much she has grown. She’s developed her own way of moving, of listening to the music that is this life around us. My only hope is that we’ve given her enough courage and comfort to always want to dance at dinner.

The music stops. She bows and looks at us expectantly, defiantly, with pride. Waiting for us to clap. We do. Not because the dance is finished, but because it continues.  

Sunday, October 21, 2012

Retro Jessie: Life With Jessie 8: School [1995, 4 yrs]


Jessie is in junior kindergarten at St Margaret Mary’s school. What a simple straightforward sentence. I can say it and people nod and smile. Off to kindergarten—how fast they grow, how cute, how wonderful. Off to kindergarten, like I’s just another step, one that happens naturally, without effort.

But, just like Jessie’s first step, it has not happened without a great deal of effort, angst, and emotion. Generations of effort, angst, and emotion in fact. Because if this were 1964 not 1994, Jessie would never have been allowed in our local school, would never have had the chance to play and learn with her neighbours, and would probably not have shouted “I’m not your friend anymore, at me when I told her it was time for bed. Oh the delights of integration!

I look at the picture of Jessie’s first day at school and cry. There is nothing in the picture itself that would make you cry, just a proud little girl with her backpack standing on the front steps, ready, just like any other child for her first day of kindergarten. She has not yet got that ticked off look that she gave me when I was hovering too close at snack time or helping her to line up for recess. The look that said—get out of here mom, I know what I’m doing and you’re bugging me.

And while Jessie knows what she is doing and is perfectly confident about where she belongs, I still cry when I look at that picture. It represents five years of struggle and growth. Five years of questioning our own values and figuring out what we believed in. Five years of getting to know Jessie and finally realizing that all we wanted was for her to have the ability and opportunity to feel at home in, to have a sense of belonging, to a community.

When Jessie was born and we were told that she would have to go to a special school, a segregated school for children like her we didn’t question it. Let’s face it, school was the least of our concerns at that point. And while it’s still true that Jessie belongs in school with children “like her,” what has changed is how we define “like her.” Like her doesn’t mean other children with Down syndrome or a developmental delay. Like her just means other children—her peers (some of whom may, or may not, have a disability or even Down syndrome), her neighbours, her friends.

We’ve learned to look at Jessie’s needs, not just her special needs. And the ones that take precedence are those that will contribute to her sense of self and belonging. Those that will give her the chance to lead a challenging and rich life and will allow her to share her very unique gifts.

When she was small, I was committed to the idea of integration for Jessie and for anybody else who had the courage and energy to fight for it. I knew that integration meant that Jessie would be able to reap the benefits (and the heartaches) of being a part of our community.

But maybe the point is that our community, our schools, need to have the chance to reap the benefits (and the heartaches) of having Jessie as a full-fledged participant. The focus shifts from just Jessie and her needs to include our needs as a community. While Jessie needs to feel a part of our family and our community (and that’s a pretty basic human need) our own family, our friends, and our neighbours, deserve the chance to re-evaluate and strengthen their own feelings of acceptance, love, understanding, and self-worth.

I’m passionate about this issue, not just because I love Jessie, but because I‘ve seen and felt the effect she has had on others, myself included. She offers us the chance to build caring, creative, and fearless communities from within. The problem is, some people see inclusion as a product. It works or it doesn’t. But it’s not a product, it’s a process. And like all processes it can be messy.

Those first few weeks of school were hell. Not that anybody would have noticed, because I was so very careful about being nonchalant, relaxed, easy going. I felt this tremendous pressure to just kind of go with the flow and keep all doors open. Jessie is the first child at St. Margaret Mary’s with a developmental delay and I wanted to make sure that I appeared relaxed and comfortable enough for everyone else to take their lead from me. But underneath I was a seething mass of tension and fear.

What if . . .  the kids make fun of her, no one understands what she’s trying to say, she pushes all the time, they don’t tell me what’s really going on in the classroom, they don’t give her enough time to respond . . .  But St. Margaret Mary’s has lived up to its logo: the little school with the big heart. Soon everyone (all 115 students and 6 teachers) knew Jessie and all the other children in junior kindergarten. Her peers and big buddies run to greet her when she enters the school yard and they don’t even seem to mind that she won’t look them in the eye. When Jessie pushes, she gets pushed back; when she grabs a toy in the sandbox, Alex has figured out that she just want to join in and finds a way to include her.

The big joke in junior kindergarten this week is “1,2,3,4,5,6… banana!” All the kids are saying it and I’m sure none of the parents get it. But when it was Jessie’s turn to do the calendar, she began to count the days, got a little bit lost, and then turned to her classmates, grinned, and said “banana!”

When I see how the other children in her class and in the school have just taken Jessie in as part of their lives, I begin to relax a bit. And thank God for great teachers like Betty Clough. Great, not because she knows a lot about special needs or Down syndrome—which she didn’t before Jessie entered her class—but great because she knows a lot about children, and cares about them. I get the feeling that together, we’ll be able to figure things out and make this year a success for Jessie, her classmates, and the school. 

Saturday, October 20, 2012

Retro Jessie: Life With Jessie 7: To Barbie or Not to Barbie [1994, 4 years old]


I look around my office and see the paraphernalia that surrounds my desk. The stuff that lets you know that motherhood has invaded every part of my life. Sure, there’s the computer, the overstuffed filing cabinet, and the rolodex. But there’s also the vacuum cleaner, the old diaper pail, and tacked around my planning board a number of bright bold pictures drawn by my four year old daughter Jessie.

Then, there are my bookshelves. Heavily laden monstrosities filled with novels, biographies, reference books, and, if you look carefully, stand on your tiptoes and peak behind the old copies of Ms. Magazine, Utne Reader, and Today’s Parent, you will find my Barbie collection. My Barbies aren’t kept carefully in cellophane or displayed in neat rows. None of them have been loved much and many of them are missing their slippers or shoes or combs. There Barbies are no treasured. They are the disappeared.

These are not, technically, my Barbies. They aren’t the ones I played with when I was growing up. And I do have to admit to having played with Barbies. Although what I remember most is how much we coveted the GI Joe because he could wrap his arms around Barbie and give her a real kiss, unlike Ken.

Just to show you that I’m not totally out of touch, I do know that Barbie can now do weird and wonderful things with her limbs. I just happen to have a gymnast Barbie right here I think . . . . yup, just behind Gabrielle Roy’s Enchantment and Sorrow. She can move in ways I never dreamt possible when I was eight. But I’m not really sure what to do with her. Her and the other Barbies I have stashed in high out of reach places around my office. This is where all my daughter’s Barbies end up. Disappeared.

I always swore that if I had a daughter, she would not play with Barbie dolls. Our house would be a Barbie-free and gun-free zone. Of course that was back when parenthood seemed like a great chance to do everything right. To change the world by bringing up children free of sexism, violence, cavities, and inner guilt. But by the time our daughter Jessie was ready for preschool, our lives had been permeated by a different kind of struggle: inclusion.

Our daughter Jessie has Down syndrome. In addition to her bright smile, her inquisitive mind, and her love of a good joke, she has one extra chromosome. And that one little extra chromosome has made some things more challenging for her and us. Things like walking, cutting with scissors, doing puzzles, and making friends.

And our vision for Jessie has at its core, a contingent of friends. Friends to laugh with, fight with, never speak to again, go to her first dance with, and be there when her heart is broken. But friendship doesn’t always just happen and for some kids, like Jessie, it needs to be nurtured, practised, and practised some more.

I do know that Jessie loves being with other kids. “Let’s go visit!” is a common refrain, or “We  will have guests?” And she gets so excited when asked to spend the afternoon at Tess’s or Charles’s house. I thought the biggest hurdle would be making other parents feel at ease with Jessie, so they would even consider inviting her over. But that doesn’t even seem to be an issue, because they have now come to know us so well—from spending time in the playground, on the streets, and at preschool together—and they know that Jessie doesn’t require any special care of knowledge. She’ll let you know in no uncertain terms, what she likes and dislikes and she’s a pretty tough kid.

No, the real challenge is teaching her skill and, yes, preschool finesse, required to join in. Because as much as she wants, so much, to join in, she can’t always figure out how it works. Her current strategy is to wave one of her ever present trolls in a child’s face or to grab a toy from them. At first glance, this looks like an aggressive act. But all she’s really trying to do, in the only way she knows how, is to get their attention. It works. But it’s not really the kind of attention she had in mind.

So we practice alternatives. At home, when we’re visiting, at school, in the park. We’ll stop to watch children an talk about what they’re doing. Then, with a little bit of help, Jessie decides what she can bring to enter into play. Tess and Natalie are making a cake in the sand, so Jessie brings two sticks for candles and walks over to join them. Instead of stepping on the cake, she puts the candles in and starts to sing and sign happy birthday. Natalie and Tess move over to make room for Jessie. She plonks herself in the sand, looks at them both, and says “I can play?” They pass her a shovel and the grin that spreads across her face makes we want to climb to the top of the rope tower and shout across the canal “She can play! She can play!”

And play she does. When she has a few cues and understands the game or the rules, she and her friends have a lot of fun. They play dress up an store and bear hunt. They laugh, they fight, they ignore each other, they take turns. They’re friends. And somehow, through it all, they’ve come to know and understand Jessie. They’re more forgiving of her quirky social skills than I am.

But, some of these friends have Barbie dolls. Her cousin, whom she looks us to, has a Barbie. Laura got two aerobic Barbies for her birthday and offered one to Jessie. This was such a wonderful moment, I couldn’t say no. Barbie just ended up stuffed into my bookshelf. Disappeared. I couldn’t figure out how to explain to a four year old that I think Barbie promotes a hideous and distorted version of womanhood, but trolls, trolls are okay.

It brings up an important question though. Where do I draw the line? We’ve worked so hard to have Jessie take her rightful place in the neighbourhood, amongst her peers, but we haven’t worked this hard to make sure that she also takes on all the unwanted by-products of belonging. I never thought that integrating Jessie would involve such difficult questions: To Barbie or Not To Barbie . . .

But at four year old, I think we’ll let her friends teach her about Barbie, because that’s what friends do.      

Friday, October 19, 2012

31/21: Jessie Flips About People First Language

This is Jessie's answer to a question from Erin last week about people first language. 

I Am Jessie

Language is what we speak, and we can choose what words we say and we can choose our words wisely. It’s wise NOT to use the “R” word, we probably all know that. And call out other people when they do. That’s hard but important.  Once at my church I had talked about ending the use the the “R” word. In general ,most people in the world say this word in casual conversations, and they don’t realize that it’s hurtful and offensive to other people. Especially all people of all abilities. We need to focus on the word Ability. And Respect.  We need to be careful of what we say and how we say it.

It’s just as important to use people first language. That means that the PERSON comes first. Sometimes people think that if it isn’t rude, then it’s okay. But I would never say I am Downs. I’m not, I’m Jessie! Down syndrome is a part of me, but it is not all of me. Here’s a poem  about  how I feel about having Down syndrome. This was long time ago when I was younger. (It was turned into a dance for the DandelionDance Company, we recorded me saying it and my cousin wrote the music for it) and we performed it all across the country!

You can share it. I’d love you to share it! But please say that it was by me. That I wrote it. So you can share it but say © Jessie Huggett, 2004 and say where you found it (at my mom’s blog, until I start my own). And if you do share it, could you tell me about it?

I AM 

I am 
I am Jessie.
Jessie.
I am beautiful.
I am graceful.
I am enthusiastic.
I am silly.
I am helpful.
I am loving.
I am brave.

I dream.
I dance my emotions.
My heart is filled with love.
I have.
I have Down syndrome.
Something extra.
A chromosome.

Sometimes when people look at me,
I feel that they don't see the real me.
They only see some kid with Down syndrome.
Down syndrome is a big part of me,
but it is not all of me.
It's not all of me.

I love to laugh.
I love to have a good time.
I love to fool around with my friends.
I like writing stories.
I like dancing and singing.
And I love people.

Be happy for who you are in your heart.
That is true!

People with Down syndrome should be allowed in schools.
They should be treated equally--equally in their hearts.
They should be involved in sports, like basketball, football.
They should dance and sing!

Sometimes people do not understand me
at all.
Sometimes I do not fit in.
At school sometimes people treat me badly and 
don't understand me.

They see a girl who has Down syndrome.
They do not see who I really am.

My personal feelings are:
be gentle, do no fight. 
And fight for your rights!

I am Jessie
I have 
I have Down syndrome

I have friends and people who love me.
I have emotions and laughter
and people who love me.

I give my gifts,
I give my beautiful thoughts.
I give my lovely dreams.

Come, share with me:
My dreams,
Your thoughts,
Together
We WILL change the world. 

© Jessie Huggett, 2004

(my mom says she would put an audio link in for the whole piece, if she could figure out how to do it!)


Thursday, October 18, 2012

Oh, The Things You'll Let Go Of!

There is a great deal of letting go required in parenting through transition. It is causing Dan to look at me sideways quite a bit. You know, like when I say: “Well, perhaps we should just accept that she is not a reader.”   

This is not about trying to teach her to read and after years and years of trying deciding that it’s just not something that she will do. This is about her being really, really good at reading, and then deciding that she would really rather do something else with her time.

You see, Jessie is actually quite a good reader and when in the habit, devours books. She was raised by two avid readers and writers and grew up surrounded by shelves brimming with leather and paper and hard-backed spines beckoning all sorts of adventure—from piglets and pooh bears to hobbits and dementors. Teaching her to read was my great delight and one of her proudest accomplishments; it seemed, to her, to offset a certain challenge with bicycles and offered her a coveted and honoured spot among her peers. And it opened up worlds and words that expanded her universe and allowed her discover her potential power. 

Roald Dahl was always a favorite, from George’s Marvelous Medicine to Matilda; unicorns, dragons, and river rats were as familiar and as loved as kindred spirits and life on the prairies. As she matured, so did the books, but still there was this attraction to magic—from Harry Potter to Twilight. Unforeseen climaxes would leave her shaking with grief holding on to a tree in our front yard, wailing “But Bella is going to DIE! And I’m NOT going to read any more!” Certain she was, that she could forestall that death just by not reading it.   

However, these days she chooses not to read unless forced to. And then it takes at least 3 days of “forcing” (i.e., you have to read for half an hour before you can go on the computer) before she switches gears and can’t be found without the book that she was “forced” to read. But given the amount of “forcing” going on and the amount of fighting and resistance that this engenders, and given that she is a relatively mature young adult,  I am thinking that I need to let go of who I want her to be (a reader) and love her for who she is (someone who reads sometimes, maybe).

It never occurred to us that Jessie would learn to read, to enjoy reading, and then choose to not read. Jessie learned to read when there were not as many resources about teaching reading to learners with Down syndrome as there are today. However, looking back I know that Jessie reading was not just a basic skill, it represented breaking down barriers, stereotypes, and prejudices. Jessie reading was a statement of liberation, of equality and equal rights. It was part of the road to freedom and self-advocacy.

So you can see why her choosing NOT to read, leaves us somewhat aghast. It’s hard to let go of something that big and deep. And then we have to step back, as all parents do (here is the equality) and let her follow her own road, her own passions and desires, and let her make her own choices, even if we think it’s an abomination! Here is the real test of how much we believe and uphold her right to self-determination, of how much we are able to really let go of our vision and commit ourselves to hers. Because, let’s face it, not reading is not a life-threatening choice. The only thing it really threatens is my sense of pride and some underlying intellectual snobbery. And maybe those need to be uprooted too.     

Wednesday, October 17, 2012

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.