#AsIAm #12... Santos and Pipe

L'Arche Internationale has done it again -- another lovely and quirky video in the form of a Latin American docu-telenovela. It's a bit longer than usual (3 parts) but definitely worth watching. Enjoy!

https://www.youtube.com/watch?v=Qv19_Qd0C_U&list=PL0_C91MnwZxQci8leGRgwLf39re21IgQr

As I Am #9 --19 paper cranes

L'Arche Internationale's little videos about the beauty, goodness and truth of people with disabilities and their caregivers never disappoint. The most recent comes from L'Arche Japan and features Sachiko, a woman who lives a beautiful life and creates beautiful paper cranes to carry beautiful souls to paradise. If you haven't seen this yet, I highly recommend it.

https://www.youtube.com/watch?v=s2hpNbELFHo

#As I am #6... If I Were a Color

When you have a disability, people with small hearts can be cruel. That's why it's wonderful when people with disabilities are cared for in a loving community like L'Arche. Nagat's story from before L'Arche and her smile now say it all. I especially like the last line of this video. Enjoy!

Darren* makes my day

I've been working from home since the end of November, and I hadn't been to the L'Arche Community Centre in well over a month. But there is a board meeting this week and I went in to prepare for it, and received a wonderful reception from my friends. I didn't realize they missed me as much as I miss them when working in my kitchen.

As I walked into the Day Program room, I wished everyone a Happy New Year, and received immediate affection. My sister Alice chided me for taking so long to come and wish her a Happy New Year. Leanne snuggled in and gave me a hug, Lucy called me over to her wheelchair for a hug, and even Darren made eye contact. I teased him, saying, "My hands are cold, Darren; can I warm them on your neck?" I slowly reached out my hand, and my non-verbal friend took it and gave it a gentle kiss! What a charmer!

How many people do you know who get that kind of a welcome when they return to work?

*I use pseudonyms for my L'Arche friends with disabilities.

“My son who was dead is alive...”

Here's a true Easter story, a resurrection (of sorts) that I learned of while working on the history of our L'Arche Edmonton community... or perhaps it's more the story of The Prodigal, with a most unlikely wayward son...

Gerard was the youngest son born to a monolingual family in a rural Francophone area north of Edmonton in the mid-to-late 1920s. He had Down Syndrome and never learned to talk. His feet were misshapen and gave him trouble all his life, so he wasn't very good at walking either. But he had the world's best smile, and he was loved by his family.

When Gerard reached the age of 14, they took him for a long drive to Michener Centre in Red Deer, where he could be with other people like him, as was recommended in those days. After that, Gerard’s oldest brother watched out for him, and organized family excursions to visit Gerard twice a year. During the Depression, they borrowed a car from their neighbours because they didn't have one, and they made the trip over a weekend.

Gerard continued to receive visits from his family at regular intervals, until Gerard’s two oldest brothers went to war. They fought in the same company, and when the eldest was injured, and dying of wounds he received, he made his younger brother promise to continue caring for Gerard. Unfortunately, family excursions to see Gerard didn't happen for quite some time after the war, because the younger brother was a broken man when he returned from overseas.

It was while he was still recovering from Post Traumatic Stress Disorder that Michener Centre's administrator decided it would be a good idea to determine what to do with the personal effects and estates of its clients should they pass away unexpectedly. An official-looking letter in this regard was sent to Gerard's mother... who mistook it for a death notice. In those days, death was a private thing, and with the second son still incapable of sorting things out, the language barrier, and the family’s understanding that Gerard was dead and likely already buried in what was probably an unmarked grave, what could they do but grieve and carry on?

Meanwhile, life at Michener Centre wasn't anything like life at home for Gerard. When he tried to bite one of the nurses, his teeth were pulled – hard to imagine now, but that was standard procedure in many institutions for people with disabilities in those days. Gerard soon spent all his time in a wheelchair because the staff found that he walked too slowly. He became something of a night owl, which was his way of adapting to the fact that staff members were too busy during the day to spend any time with non-verbal people who didn’t call attention to themselves.

The few staff who may have wondered why Gerard's family stopped visiting moved on to other workplaces. Since he couldn't tell newer staff members that he had a mother, brothers and sisters, or where they lived, it was eventually assumed that he had no family at all. Records of family contact were somehow lost as well.

In the late 1970s, after the Shalom Community (L'Arche Edmonton) was fairly well-established, someone from the community visited Michener Centre to see if any long-term residents with no family might like to come and live in a L’Arche family. Something about Gerard caught the visitor’s attention, perhaps the funny little ‘thumbs-up’ signal he gave, the twinkle in his eye, or his dazzling but toothless smile that lit the entire room. At any rate, an invitation was made to Gerard, and the Michener staff followed through and brought him to Edmonton, though they couldn't imagine why anyone would want him to come and live with them.

Gerard loved car rides. He enjoyed the drive, and surprised the Michener staff member when he patted a dog that lived at the L’Arche home he visited. It had never occurred to staff at Michener that he would even knew what a dog was! After all, as far as they knew, he had lived his whole life in the Centre.

Gerard seemed to like visiting Shalom, and the people at L'Arche liked him. After a couple of visits, it was agreed that he would join the community. He arrived with no records other than his name, and his garbage bag of possessions included a pair of slippers, three ancient pairs of pin-striped overalls, and no outerwear of any kind -- in short, no clothing that could be considered presentable, because Michener staff didn’t expect that he would be going out -- simply because people like Gerard didn’t have anywhere to go. He hadn't been out in public since he left home.

To say that Gerard blossomed in L'Arche wouldn't be an exaggeration. Though he never did learn to talk, and he moved only at Gerard-speed, he began to walk again, went on outings and vacations, and enjoyed his interactions with other community members and friends. A woman who volunteered with the community loved to have tea with Gerard every week because, as she explained to the community leader, “His heart is an ocean of peace.” Just being in his quiet presence was an immense gift to her.

Gerard's sense of humour also began to shine. The first time it snowed after he arrived in the community, he refused to wear his boots. Instead, he took them to his bedroom. His house leader fetched the boots and explained to Gerard that he couldn't attend his sheltered workshop unless he wore his boots. He then hid them under his bed. The house leader found the boots again, explained the situation once more, and the phone rang. While she took the call, Gerard hid his boots in a more difficult hiding place. Eventually the house leader found the boots and explained that without his boots, Gerard’s feet would freeze. No matter – he hid the boots for a fourth time. By this time, his ride to the workshop had come and gone. It took a few more games of boot hide-and-seek before he slowly put on his boots and his house leader drove him to work. As she wryly noted when she was telling me this story, she had to give Gerard credit – his boot-hiding spots got progressively more difficult!

When the Shalom Community celebrated its 10th anniversary in 1982, it began looking into its past, contacting family and friends from its first decade. One assistant decided, on a whim, to see if he could track down someone related to Gerard. By cold-calling people in the phone book with the same last name, he eventually reached Gerard’s brother, who had recovered from his war injuries. At first, the man thought the assistant was a crank caller, but finally, he was convinced that the person on the other end of the line had Gerard beside him, and he was alive!

The assistant took Gerard shopping for some special clothing to wear to the anniversary celebration. From all reports, he was the prince of the party, looking very dapper in a tuxedo and soft Italian leather shoes – especially with his smile! No one was prouder or happier than the brother who was finally able to keep the promise he had made to look out for Gerard.

As it turned out, Gerard's mother was still alive, so a special homecoming was planned for her long-lost son, who wore his tux and special shoes for his first visit with his entire family in over 30 years. It was a jubilant, and very French, celebration. Did they kill the fatted calf? We don't know, but Gerard's mother was every bit as happy as the prodigal father, overjoyed to see the offspring she had thought dead. She showed to Gerard’s assistant the letter she had mistaken for a death notice, and thanked him many times for bringing her son home. 

It's not hard to imagine that Gerard smiled his beautiful, room-brightening, heart-melting smile, and gave his special thumbs-up sign all around. Maybe he even danced.

An Easter story if I ever heard one!

Telling an amazing story

More and more, I'm realizing that I really am a writer. I mean, anyone can sit down and write, but a lot of people have a hard time with syntax or grammar or misplaced modifiers. I used to be that way, too, but after over ten years of writing an actual manuscript that I hope will be published and sell many copies (see last Tuesday's moodling), I finally understand how words work, how necessary good spelling is, and the importance of varying sentence structure. Not that I'm perfect, and not that my prose is at all poetic. It is readable, and after having a few people say, "you're a good writer," I'm finally starting to believe it.

So now that I've finished one major writing project, I've gotten myself into a pickle. My boss and the Board Members of L'Arche Edmonton asked if I would consider writing the history of the Edmonton community over the last 40 years. Because I love the community, and I believe in the importance of knowing from where we have come, I didn't even think twice before I said yes! What could be more interesting than getting into the how and why of a community made up of people with and without disabilities who live together, family style, and who offer society a completely different understanding of the value of those who have long been denigrated and misunderstood -- labelled "retarded" and other, even harsher names -- but who have the most to teach us about loving unconditionally? (And am I really a writer, after that ridiculously long sentence??)

Eight years after L'Arche was founded in France, Doris and George Myers bought a duplex in Sherwood Park and welcomed one man with disabilities and four assistants to what eventually came to be known as the Shalom Community, or L'Arche Edmonton. It was that simple.

Within a year, the community numbered 35! You see, it's an amazing story that I have been asked to tell. In reading previous versions of the history written by others, and through interviewing people who have been involved over the last 40 years, I am getting a picture of something very challenging, and extremely beautiful. L'Arche Edmonton has had no shortage of visionaries who have helped the community along, giving their time, energy, and many talents toward creating "home" for people who, in the not-so-distant past, were left in psychiatric wards even though their only issues were intellectual disabilities. If you don't know what I'm referring to, just reread the story of Thomas.

The community has also had its share of struggles. As with any family, personalities sometimes clash, and the fall out can be messy. Different people have different ideas about what needs to be done, and how to do it. There were several times that things almost fell apart entirely, but for different people coming along with fresh perspectives, willing to compromise or try things a little differently. Like any ideal, L'Arche has yet to be fully lived in some respects, but members continue to try to reach the ideal -- a life where people with disabilities are valued and understood to have just as much to offer the world as those who don't. I suspect the challenge and the beauty of living that ideal are similar in every L'Arche community, from El Arca Buenos Aires in Argentina all the way to L'Arche Zimbabwe and every other corner where L'Arche can be found.

In L'Arche communities around the world, there are probably hundreds of thousands of life-changing and mutually life-giving encounters between people with and without disabilities that are nothing short of inspirational. It's my task to capture a few of the local ones. Interviewing past members of the community and sorting out the details is turning out to be a mammoth challenge for someone whose writing abilities were forged in fiction, but it is a challenge I am enjoying nonetheless -- I find myself in a very positive pickle. I only wish that everyone in L'Arche Edmonton could be with me as I talk with people about our history, as I'm seeing that there is no way I'll be able to do justice to all of the amazing events and people from the past 40 years! And I'm only writing the first chapter! The hope is that the history will be ready in time for L'Arche's 50th Anniversary in 2014, but we'll have to see how things go.

Stay tuned, as I suspect a few stories from this positive pickle I've gotten myself into -- or, rather, this labour of love -- will appear here, simply because they're too good not to share!

The Boy in the Moon... and an amazing dream

These days I'm reading a wonderful book called The Boy in the Moon: A Father's Search for His Disabled Son by Ian Brown (2009, Random House of Canada, ISBN 978-0-307-35710-6). Ian, a feature writer for the Toronto Globe and Mail, tells the story of his son, Walker, who was born with a disability known as cardiofaciocutaneous syndrome (CFC). Ian is a gifted writer whose truthful, matter-of-fact prose borders on poetic even as he discusses how difficult it is to have a child who exists outside of what's considered normal, how hard it was to provide constant care, and how much anguish went with the decision to find a group home for Walker.



I haven't wanted to put the book down. Ian's writing is compelling, not just because I have an uncle and cousin who have disabilities, or because I've worked with people with disabilities at various intervals in my life and  now work with L'Arche, a community where people with and without disabilities live together in relationship. Ian shows the pain and beauty of his relationship with his son, and the joys and struggles that go with it. Reading about Walker has made me realize that I may have known a person with CFC in the first group home I worked in back in the early 80s. And Ian's comment about his wife and daughter dreaming of Walker talking like a trial lawyer sparked a most amazing dream for me, too...

I was at a large L'Arche banquet, with Lucy on one side of me, and Daria on the other. Lucy normally communicates with a series of moans, and Daria with a few repeated syllables, but at this banquet, the two of them were chatting and laughing non-stop about everything. My jaw dropped at their conversation, and everyone around me was laughing at my reaction, because they all knew Lucy and Daria could talk and I wasn't in on the secret. It was a wonderful, happy dream, because for once I didn't have to guess at what my two friends wanted to tell me! I woke up laughing.

What I really love about The Boy in the Moon is that it is written with the awareness that, even though we would like to live in a world where no one has to struggle with disability, people who are disabled have many gifts to offer. Ian Brown writes eloquently about the bitter-sweet joy Walker has brought into his life. I understand that, though only from a niece, cousin, and friend's point of view, not as a parent. I sometimes wonder what the disabled people in my life would be like without their disabilities, and wish that disabilities didn't happen. But Uncle Louis is a dear man, and Sarah is my favourite disabled cousin just as I'm her favourite "oldest cousin in Edmonton." Every time I go to work, Thomas fills me in on the whereabouts of all my colleagues and their cars. Darren's preoccupation with arranging the lunchroom chairs in perfect rows around the table makes me smile. Harry tells me garbled but assuredly humourous stories that make him laugh, which makes me laugh. Jane informs me when there are babies anywhere in the vicinity because she loves babies. Sandy wants to help with whatever I'm doing, but especially with shredding. All of them would be very different without disabilities, but all offer amazing gifts to those of us who know and love them.

A simple Christmas pageant

In addition to finding ways to simplify our Christmas giving, our family also tries to take a few opportunities to remember "the reason for the season." One of my favourite events in this regard is the annual L'Arche Christmas pageant. Now that I work for L'Arche, I have all the dope on what's happening this year because I spent a good part of Monday spreading the word to various media outlets.

For those who have never attended a L'Arche pageant, it's an experience like no other. The story in the gospel of Luke is re-enacted by our community, with the starring roles of Mary and Joseph often played by our people with disabilities, assisted by people without disabilities. Last year, "Mary" had a "nursemaid" (our board chair) to help her with "baby Jesus" (our board chair's infant daughter). Naturally, the baby was more taken with her "nursemaid" than with being Mary's "son," so Mary gave up and wandered off stage for a time and had to be coaxed back to finish the play. Shepherds, angels and wise men all played their parts as expected, some from wheel chairs. The evening included a very special tradition -- the singing of Silent Night in all the languages represented in our community. Last year, there were verses sung in 22 languages; I'm not sure how many there will be this year.

So if you're in the neighbourhood, and want to enjoy hearing a simple and beautiful retelling of the ancient story that is soon to be celebrated by Christians the world over, you're invited. This year's Christmas pageant will be held at St. Thomas D'Aquin Church, 8410 89th Street, Edmonton, at 7 p.m. on Monday, December 13th. As the L'Arche Edmonton Mandate says, "We want to tell people about L'Arche. We want to have more friends." So feel free to bring your friends, and perhaps a donation for the Food Bank, if you like. We look forward to seeing you!