Children learn what they live

To say that childhood experiences shape our lives is, I suppose, stating the obvious. As the poet Gerard Manley Hopkins observed (in less inclusive times) "The child is father to the man". I have been ruminating on this fact more than usual over the past little while.

Right now there are seven kids being raised in our community of L'Arche. Seven kids, all under six, three of them less than three months old, whose early lives are being lived out in what is unfortunately a very unusual environment. Seven kids who daily encounter wheelchairs, sign language, foreign accents, many shades of skin colour, and grown-ups who need lots of help with lots of things. When my daughter gets home from school (and has her ritual milk and cookies) she trots off next door to visit Amy, Angela, Rod, Haley, and the rest of the folks at Korban. In the mix are two wheelchairs, two people who don't speak, three people who grew up in big institutions for people with disabilities...and that's just the tip of the iceberg. Maggie doesn't see this as anything out of the ordinary. But surely it is!

I wonder how the little kids growing up in this magical, crazy place will turn out? Will they be a part of a societal sea-change, a revolution that will reveal the gifts of people with disabilities and enable them to claim their rightful place in the world? Will they continue to value difference as a part of what makes the world turn in the right direction? Will they take Jesus back from the hands of the fundamentalists and use his words and example to make the world a more compassionate and welcoming place?

Right now Maggie wants to grow up and "live in a L'Arche community". Sounds pretty good to me.

She's the Bomb!

We have company this week. Our friend Mary is staying with us until the end of the month. Mary is a little woman with a big presence. She's closing in on 60, with a great smile, an eye for detail, and an appreciation for the absurd. She also has Down Syndrome, rides in a wheelchair most of the time, and doesn't hear at all. She communicates with a heavily adapted version of sign language that accommodates her arthritic fingers, complimented by some pretty clear body language.

Mary is a regular visitor at our house, and it is such a treat to welcome her, in particular because of how much she and the kids enjoy one another. The boys are very physical beings, always creating some kind of spectacle, be it wrestling under a blanket in the middle of the living room floor, balancing sideways on the back of the couch, or moving their high chairs across the floor by ferociously bouncing up and down during meals. This kind of entertainment is right up Mary's alley and she watches, fascinated, with an amused smile tinged with just a hint of disapproval. The boys seem to know that she loves them, pointing to her and announcing her nickname in their husky, slurred little voices, "Bomber!"

Maggie is fascinated with Mary's communication style, and loves the challenge of trying to get her point across to Mary, as well as to decipher what Mary is trying to say.

And so Mary fits right in, rounding out our crazy family with her years of wisdom and peaceful, centering influence. At the end of the day when the kids are settled, she sits with me on the couch and smiles. She looks in my eyes and reminds me of our years of friendship and all that has changed for both of us since we were roommates many moons ago. Even though now I am all grown up (thanks, in large part, to Mary) I still feel like a kid in comparison to Mary's life and experience. She is like a silent mentor who, without saying a thing, reminds me of who I am and what is important.

Pinky Dinky Doo

Last week a student at Central Kings Rural High School in the Annapolis Valley, NS, arrived for his first day of Grade 9 excited about beginning a new year at a new school, and wearing a pink shirt. One might think the colour of his attire would be an irrelevant detail of the story, but sadly, this was not the case. The teenager was singled out by a small group of students and harassed about his wardrobe. The local papers politely described that he was called a "homosexual" and, along with being verbally abused and mocked, was threatened with physical violence.

Two Grade 12 students, David Shepherd and Travis Price, heard of the incident and took matters into their own hands. After school, they visited local stores and purchased 75 pink tank tops and an assortment of pink hats, scarves, armbands, and other accessories. They circulated word of their plan via the internet, and met fellow students before school the next day to hand out the duds. By the time school started on Thursday, approximately half of the 830 students at the school were wearing pink in support of the bullied student and the principles of human dignity and human rights.

Of course their actions completely turned the tables on the bullies, and spoke volumes to the victimized student of his value as a member of the school and his place among the student population.

I have not been able to stop thinking about these guys since I heard this story a couple of days ago. Talk about the Gandhian principles of truth and ahimsa and the peaceful resistance of Martin Luther King, Jr. These two high school students have made a profound and powerful statement, one that hopefully will be heard far and wide. As Silas commented, if you pass a car accident and you jump in to pull someone out of the vehicle, you'll be lauded as a hero. It takes a lot more courage to take a stand against your peers, especially when your peers are high school students!

John MacKnight describes true inclusion, true welcome, as "standing at the centre of our communities and saying, in a voice that can be heard at the margins, 'We need you'". These guys captured that voice with eloquence, and without violence. Good for them.

A picture tells a thousand words

Last night I rearranged the pictures on the walls and mantles in our house, moving the old, outdated portraits of the kids and replacing them with the ones we had taken this summer. It's such a lovely chore - time to look at those old pictures and try to remember what the kids sounded like, what they did at each of those stages. And I am a bit of a framed photo junkie - Silas gets frustrated with that by times - all our blank wall space filled with pictures, all our flat surfaces covered in propped-up framed memories. But as my friend Brenda would have said, I can't help it; I was born that way.

When I rearranged things last night, I hung all the old portraits of the kids (we have them taken once a year) on the wall above the landing at the bottom of the stairs. So when I descended the stairs, bleary-eyed and bushy-haired, this morning, I was greeted by so many smiling faces of our three kids. Talk about starting your day off right.

The photos of the boys seemed especially poignant. My boys, Jacob and Josh, are twins, both with Down Syndrome, who we adopted when they were five months old. Their sweet, mischievous faces smiled out at me from behind the glass of the picture frames, reminding me of so much...getting the call from Children's Aid that there were twins - TWINS! - with Down Syndrome who needed a home...meeting them for the first time at their foster home when they were still sharing one crib...the times when we could plop them on a blanket in the middle of the living room floor and they would actually stay there, balancing on their bellies with their arms and legs outstretched like little airplanes...big sister Maggie singing "I love you forever..." to her brothers in their cribs at bedtime...the list is endless and fills me with warm feelings and gratitude.

And those memories stand out today because of something I read on Chewing the Fat, Dave Hingsburger's blog. (If you don't read this blog, you must. Trust me. The link is posted on the sidebar of my blog's front page.) Apparently, in Italy there is a recent case of a couple who were expecting twins, one of whom was discovered, in utero, to have Down Syndrome. So the couple chose to have that fetus aborted. After the abortion, the doctors discovered they had aborted the "wrong" baby. The "healthy" child was aborted and the child with Downs survived. So, of course, a second abortion was performed.

The tragedy described was the one of the mistakenly aborted "healthy" child, never given the chance to be born and thrive and live a productive life. This morning I looked at the photos of my beautiful boys and thought about the real tragedy. The tragedy of discrimination, the tragedy of the medical model of perfection, the tragedy of lives lost to what masquerades as progress.

Rita and friends

This summer Janet turned 60. This is a big birthday for anyone, but for someone with Down Syndrome, already showing signs of Alzheimer's and other age-related health issues, and who has to date buried three close friends who also had Down Syndrome and who all died long before making it to 61, well, the significance of this milestone cannot be overstated. Add to that the fact that Janet begins counting down for her July birthday sometime in early August the preceding year and you get a sense of the level of enthusiasm we are dealing with!

Among the myriad of ways Janet celebrated her birthday this year was one particularly special event. Thanks to her friend Mary (it's good to have connections!) Janet and 10 of her closest friends were invited to Big Pond, Cape Breton, for lunch at Rita MacNeil's Tearoom. Now, the biscuits alone at Rita's Tearoom are sufficient to warrant a certain amount of eager anticipation. But Janet was not invited just for the biscuits. Janet was invited for lunch with the star of the show, Cape Breton's superstar, Rita MacNeil herself.

Like many people I know with Down Syndrome, Janet is a Rita MacNeil uber-fan. Her CD collection includes all Rita's titles, her wardrobe has Rita T-shirts in the double digits, the walls of her room are plastered with pictures of the Cape Breton singing sensation, and at any opportunity for a performance, Janet will find the closest thing to a microphone (a ladle, a rolling pin, a twig) and belt out "Working Man" with unequaled passion and gusto. Janet and I were fortunate enough to live together during the run of Rita's Friday night CBC TV variety show, "Rita and Friends". Friday nights from 8-9pm were sacrosanct. We gathered around the TV in the basement, popcorn at the ready, listening to Rita's powerful singing and sweet, self-conscious banter with hushed reverence.

And now a "private audience" with Rita. Amazing.

I was touched to be invited by Janet to join her for this lunchtime event. Those of us who love Janet were more than a little apprehensive as we prepared for the celebration. Janet is getting old, and showing her age. As with so many people with Down Syndrome, dementia is slowly creeping in and stealing Janet's peace, her humour, her independence, her ability to enjoy life. Intense emotion can overwhelm her, and this day would surely be filled with that. Having to keep to a rigid schedule, once something she demanded and loved, can now leave her in tears. So we crossed our fingers, surrounded Janet with people she knows and who know her, and off we went.

The brilliant sun over the blue waters of the Bras d'Or as we drove through Eskasoni and East Bay seemed to be a good omen. We arrived at the Tearoom in good spirits, having sung along with Rita on the CD player the whole drive down. With a friend on each arm, Janet plodded up the ramp into the Tearoom and we presented ourselves to the waitress. There was a little confusion about who we were and when we were expected, so we wandered around as we waited for things to be sorted out.

Before long, Janet caught sight of Rita. She squinted up her eyes, as she often does to help her focus, and tilted her head slightly to one side as she worked to connect what she must have imagined was a mirage with what evidently was becoming a reality. As everything clicked into place, she quietly, and with a sense of disbelief and wonder, exclaimed, "Rita!" In a manner fitting her age and the occasion, Janet slowly walked toward her idol, looked closely into Rita's face to make sure she wasn't dreaming, then gently wrapped her arms around Rita's shoulders, placed her head on Rita's chest, and smiled. This smile did not dim or fade once during the two hours we spent with Rita at lunch!

And the lunch was lovely. Rita was an absolute gem, making small talk with our strange crew of friends. She had no trouble joining in Janet's typical teasing - "chicken legs", "old hen", "you're cracking up". Although Janet simply would not stand for anyone to call Rita an old hen!

Several times during lunch, Janet would gaze at the photo of Rita on the CD she clutched in her hand (a CD, incidentally, that Rita had given her, signed, as a birthday gift) and then look up at Rita, in the flesh, sitting right next to her at the table. This seemed to be a wonder that Janet could barely comprehend. And then she would tune into the music coming over the speakers, which was (of course) Rita MacNeil. She would look up at the speakers, at her CD, then again toward her host, in absolute amazement. This woman was even more incredible that Janet had imagined!

After a delicious lunch (which Rita graciously looked after - her treat) and what seemed like endless hugs, we prepared to leave. I linked Janet over to the guest book, where her shaking hand and deteriorating vision made it virtually impossible for her to write much. But she did her best, telling me she had written her name and "I love you, Rita." And on that note, we left to drive home.

I believe that we discover what is holy, sacred, mysterious, through our relationships with others, and those few hours with Janet were filled with holiness and mystery - and not just the mystery of how Rita could be sitting at our table and singing on the PA at the same time! But that visit to the Tearoom with Janet brought me back to what is means to live a life of gratitude, to be present to each moment, to embrace my own vulnerability and allow it to bring me closer to others instead of isolate me from them. And it opened me yet again to the gift of the life of a little woman who has, in ordinary ways, helped to make my life extraordinary. Thank you, Janet.

Possibilities...

This summer I came upon a T-shirt with the slogan "Nobody cares about your blog". This may or may not be the case, but in any event I persist in my endeavours to share my life and my thoughts with others. My motivation is not to elevate myself or my own experiences to something worthy of admiration - or even interest! Instead, I simply recognize the unique situation I am in as a member of a L'Arche community and the parent of two kids with disabilities. I know this puts me in the path of stories and experiences not everyone encounters or notices. It opens my ears and my eyes to unlikely teachers. It helps me to live a grateful, reflective, sometimes even contemplative life. I think it gives me something to say, and so I want to say it.

The following piece was written by my husband Silas for the August 2006 issue of Am Furan, the newsletter of L'Arche Cape Breton. I wish I had written it! It deserves to be shared.


“Dad, can we talk about possibilities again?” “You mean disabilities?”

Raising the little community of my family inside the big community of L’Arche offers some unique opportunities. I hope I am learning to make the most of them.

I’ve always been proud of the difference between my daughter’s experience of disability and the experience I had as a child. Kids with disabilities were not integrated into my elementary school, and students with disabilities in my high school spent their days in a special room. None of them ever came out and none of us went in. Naturally, I learned to be suspicious, even afraid, of people who looked, sounded, and acted different.

My daughter Maggie, at three years of age, has a couple of dozen friends she sees each week who each have a developmental disability. She knows people who use wheelchairs or walkers, people who don’t speak, grownups who need help with things like eating or getting around. She knows that people are different, as she knows who in her family is left or right-handed, or whose hair is straight or curly. But she has never heard of “disability” as a way of categorizing people.

But lately my wife and I have questioned this innocence. Maggie has always known that she grew inside her mother’s belly, but that her younger brothers grew inside someone else’s belly. She knows that we adopted her brothers. Why doesn’t she know that they have Down Syndrome? As Josh and Jacob grow up, won’t they, and she, do better if we raise them up to be conscious and proud of their difference?

To repeat a cliché, no-one gives you a manual when you have kids. How could I talk about disability in a way that a three-year-old would understand? Moreover, how could I talk about disability in a way that didn’t make it sound like a disease? Even the word, “disability”, means something is lacking, something is wrong with a person.

I know how much richness has come into my life because of people with developmental “dis-”abilities. I know how I’ve learned to think differently, to feel better, to relate to myself and to others on a deeper level, because of the relationships I have with people with disabilities. I don’t believe disability is a problem to be fixed. I believe it is a gift our whole society yearns for, but which most of us don’t know how to unwrap. But how to explain that to my three-year-old?

It was easy to explain disability. I talked about Buddy and his wheelchair, and how he has a disability because his legs aren’t good at walking. Then I talked about the people she knows who have Down Syndrome, particularly her brothers and Janet Moore. Her brothers took a long time to learn how to walk, and they only know a few words. Janet is a grown-up but she needs help to get up the stairs to our house, and she doesn’t know how to read a story for Maggie. But what about the positive side?

Here’s the best I could come up with: “Every week when Janet comes to our house she gives me a hug, doesn’t she? There aren’t many 50-year-old women I know who give me a hug every time they see me. But I know a lot of people with Down Syndrome, and almost all of them are really good at hugging. So that’s something that’s nice about having Down Syndrome.”

It didn’t really seem like a fair trade: the ability to read and to get around by yourself for a few hugs. I felt my explanation was stumbling. But then, after a pause and a distraction, Maggie brought the conversation around again: “Dad, can we talk about possibilities again?”

It took me a minute but then I caught it: “Ah, you mean disabilities?” “Yeah, possibilities.”

What a wonderful pun. Even if it happened by accident, and in spite of my explanation, I knew that my message had gotten through.