Friday, September 20, 2013

"People believe us now."

On Tuesday, the Ontario government settled a class-action lawsuit with former residents of Huronia Regional Centre, a massive institution for men and women with intellectual disabilities that was operated by the Province of Ontario for 133 years, and that finally closed in 2009.  The thousands of men and women who were incarcerated there, for the crime of being born with a disability, suffered tremendous physical, emotional, and sexual abuse.  They were sterilized, forced into hard labour for no pay, denied the basic freedoms we take for granted, and made to believe they were sub-human.  To hear from some Huronia survivors, you can listen to David Gutnick's excellent radio documentary The Gristle in the Stew, from the CBC's Sunday Edition.  There are numerous articles about the details of the recent court settlement, a couple of which you can find here and here.

When L'Arche was founded 50 years ago, the dream of liberating people from institutional care was at the heart of our story.  So many of our people came from the "land of the long corridor", as David Hingsburger so eloquently describes it.  They came from padded rooms and too much medication, dormitory bedrooms and bathrooms without doors, nursing stations and blaring televisions, dining halls and never going outside.  They came from suffering and neglect and powerlessness and violence. 

And yet they survived.  And not just to exist, grateful to be free from that life and content with whatever they were offered in their new lives at L'Arche.  They survived to live - to celebrate and love and argue and grieve and demand what they wanted.  They survived to embrace the whole of life, the abundance that is sometimes wonderful and often excruciating.  They survived, and keep surviving, and that is amazing.

My boys, both of whom have intellectual disabilities, will never live the horror of institutional life.  They are included in their school, welcomed in our neighbourhood, loved fiercely and unconditionally by everyone in our family.  But the story of Huronia and so many other awful places that have existed and continue to exist is their story, too.  The men and women who endured institutionalization, and who fought to end it, are their ancestors, their predecessors in the struggle for disability rights.  My boys need to know that story - we need to teach them that story - so they can be proud of what their people have accomplished, so that they will not be afraid to demand what they deserve: a society that respects, listens, honours, and welcomes them.


Thursday, August 1, 2013

Chromosomal Controversy


Today's edition of The Current contained an excellent piece about Down Syndrome, particularly regarding potential implications of recent research on the 21st chromosome.  You can listen to the piece here.  Following is a letter I sent to The Current in response.

I want to congratulate you for your piece this morning covering the recent research on the 21st chromosome, and its potential implications on the life and the existence of people with Down Syndrome.  As the parent of two kids with Down Syndrome, and a long time member of L’Arche, my life is full of interactions, relationships, humour, and struggle centred around that extra piece of genetic material.

To hear both the scientific perspective, and the opinions of two articulate and passionate parents, was a refreshing shift from the typical media coverage of disability, which inevitably assumes that disability is bad, and thus eliminating the disability must be good.

Most importantly, your decision to talk with an individual with Down Syndrome was what made your coverage exemplary.  Too often, debate and decisions about people with intellectual disabilities happen without their participation or consent. 

In 2011, researchers at Boston’s Children’s Hospital published three studies about individuals with Down Syndrome and their families.  Among other results, their studies reported that nearly 99% of people with Down Syndrome indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they look.  Before we push ahead in our efforts to eliminate Down Syndrome, perhaps we ought to spend a little more time and effort hearing from people who are proud of who they are, regardless of their genetic differences.

Thursday, June 20, 2013

Betty Anne Gagnon

This week on the CBC radio show The Current, they aired a documentary called "What Happened to Betty Anne Gagnon?".  It tells the horrific story of a woman with an intellectual disability who was brutally abused, neglected, and eventually died at the hands of her own family.  The story is disturbing.  But it is also true. I wrote the following note to The Current in response to the story:

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I listened with anguish, but not disbelief, to your documentary about the tragic life and death of Betty Ann Gagnon.  As well as being the parent of two boys with intellectual disabilities, I am also a long term member of L’Arche, an international federation of communities, founded by Canadian Jean Vanier, creating home and work with people who have intellectual disabilities.  After more than 20 years of involvement in the disability field, I am more convinced than ever that people with intellectual disabilities are the most devalued and voiceless in our society.  Often unable to articulate themselves using traditional means, they rely on others to speak for them, and as such have little or no power over their own message. 

In L’Arche, as in People First and CACL, we are deeply committed to advocating for the rights of people with intellectual disabilities.  Our advocacy is rooted in the passionate conviction that these individuals, often marginalized, overlooked and abused, are not a burden on the social safety net.  Rather, they are full citizens with something to say and something to offer.  And we ignore their contributions at our peril.  If we desire a more welcoming, compassionate, and creative Canadian society – and I think we do – these men and women can be our teachers and our leaders.  But as long as our systems continue to push them to sidelines their voices will remain unheard and their lessons unlearned.   And they, like Betty Ann Gagnon, will be the victims of our collective neglect.

Wednesday, June 12, 2013

The Still, Small Voice

An investigative team from the school of journalism at the University of Kings College released an in-depth article yesterday on the crisis in housing for people with intellectual disabilities in Nova Scotia.  The piece, which you can find here, is thorough, well-researched, wide in scope, and heartbreaking.  It seems that the primary struggles of the individuals profiled in the piece are not their disabilities per se, nor the way those disabilities might affect their mobility, learning skills, or emotional health.  Instead, the suffering they endure arises from the way the provincial "support" system treats them as a result of their disabilities.  They are reduced to their diagnoses, their difficult behaviours, their classification level.  They languish on endless waiting lists with no idea of the future, then are hurried into last-minute crisis placements at warehousing facilities.  They are forced to fit into an existing (outdated) system; the system is not expected to change to fit the needs of individuals.

This is not news to any of us who have friends or family members with intellectual disabilities, or who have been involved in this field for any length of time.  Our people are overlooked, patronized, ignored, devalued, and abused.  Their voices are not heard.  But boy, do they have something to say.

Lindsay and Tanya, both of whom graduated from high school and hold down full time jobs, would say that they deserve the right to stay home alone and watch TV or read a book or relax on the couch for a couple of hours every now and then.  But because they live in a provincially funded group home, they are denied this dignity of risk and are forced to join whenever their housemates leave the house.

Mary would say that she wants to live in her own apartment, eat what she wants when she wants, choose her own movies, stay in her PJs all weekend when she feels like it.  But the provincial system only allows a few agencies to provide independent living support, and since Mary does not live near any of these supporting agencies, she isn't eligible for that kind of help.

Carroll would say that he wants to stay in his own home, where he has been living for 23 years, even though he is getting older and his needs are changing.  But since that home is a provincially funded group home, Caroll has to leave and move to a nursing home facility an hour away to live out his last days in isolation, surrounded by strangers.

There are hundreds of stories like these across our province and across our country, hundreds of people whose voices are not being heard.  I applaud the families and individuals who are standing up and speaking louder in response.  I pledge to do the same.





Thursday, May 23, 2013

The Right House

Last weekend, the CBC Radio program Maritime Magazine aired this 30 minute documentary about the plight of Nova Scotians with intellectual disabilities fighting for for appropriate living situations.  I sent them this letter in response.

Dear Ms. Brunelle,

I wanted to thank you for shining a light on the injustice faced by so many people with intellectual disabilities in Nova Scotia.

Many of your listeners may not be aware that Canada has ratified the United Nations Convention on the Rights of Persons with Disabilities.  This Convention states, among other things, that "persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement."

The Convention guarantees that people with disabilities are entitled to receive "the assistance necessary to support living and inclusion in the community".

Your story clearly illustrates that this is not happening for many people with disabilities in this province.

After 20 years supporting people with disabilities in L'Arche, it is my sense that the solutions to these issues are not as elusive or complex as our governments would have us believe.  There are many individuals with disabilities, families, and supporting agencies who are eager to design and deliver the type of support that is needed, often with much less money that the government currently spends on outdated, custodial care. Unfortunately, it is often the systems that are meant to support our people, and the bureaucrats who administer these systems, that get in the way of the innovation and creativity of the people "in the field".

A key concern for me is whether those in positions of power see people with intellectual disabilities as a problem to be solved, or if they actually value the contributions that these individuals can bring to our society if given the opportunity to do so.  It is my hope that the remarkable people I have met through my involvement with L'Arche and other like-minded organizations will continue to announce their value and refuse to be defeated by a system that has lost touch with the needs of the most vulnerable people in our society.


Sincerely,
Jenn Power
L'Arche Atlantic

Wednesday, May 15, 2013

Pilgrim's Progress

Recently, I was with a diverse, committed, and long-suffering group of disability activists.  We had the ear of a couple of government employees who were seeking input on, among other things, how best to support people with disabilities in our province.

There was no shortage of ideas.  (No shortage of frustration, either, in having to repeat AGAIN the feedback that's been offered to a seemingly endless stream of bureaucrats over the years.)  One issue centred around the requirement of folks with disabilities to "progress".  They are subject to a constant stream of (well-meaning) growth plans, goals, behaviour strategies, incentives, and on and on.  The consensus around the table was that people with disabilities should be allowed to be lazy, too!

Dennis fights for this right with a passion that is anything but lazy.  Having lived in a group home for many years, Dennis announced in words and with actions that he did not want to live with a crowd anymore, that he wanted - needed! - his own space.  So with some creative planning and negotiation, we were able to build a bachelor apartment for Dennis where he can have mornings and evenings on his own, but still be with friends for the times he enjoys - mealtimes, outings, etc.  In his apartment he can sleep in, have executive decision making power on what movies get watched, leave dishes in the sink, take a sick day from work, stay all day in pyjamas.

The program that we squeezed Dennis into in order to access funding for him values accomplishments, progress, and improvement.  Over his first few years in the apartment, Dennis pushed against the expectations of his caseworker and support team, choosing not to do things like learn to manage his own medication, take cooking lessons, or join service clubs or interest groups in the wider communtiy.  This worked well for Dennis, but it did not sit well with the decision-makers who signed the cheques for his (meagre) funding.

After a few years of ongoing back-and-forth discussions about this so-called problem, Dennis was summoned to a meeting to consider the future of his independent living arrangement.  I accompanied him to this meeting, held half an hour's drive away in a building he had never seen before.  There were six (six!) bureaucrats/social workers/residential support workers waiting for Dennis, all of whom had clearly already decided that Dennis was not a good fit with this apartment program.  They suggested as such to Dennis, in a manner that felt more than a little like a firing squad.  But Dennis would not budge.  He firmly responded to every question that what he wanted was to stay in his apartment, with the support he already had, and without having to take on any more self-improvment projects.  But, the deciders insisted, you aren't making any progress.  And if you aren't making progress then you can't stay in this program.  And if you aren't in this program then there is no money for your apartment.  So no progress, no apartment.

Wait a minute, Dennis insisted.  I do so make progress.  You know I had a fridge that used to ice up all the time, and leak all over my apartment floor.  Me and my mom defrosted it, and Roddie fixed it, and now it doesn't ice up anymore.  That's progress.

Dennis still enjoys his apartment living.




Tuesday, April 23, 2013

She's A Fighter

Sandra is in the hospital. And not just for observation, or to get some treatment for ulcers, or to get IV antibiotics for pneumonia. Sandra is in the ICU after having had cancer, then major surgery, a stroke, internal bleeding, a second surgery, and now forced sedation to prevent swelling in her brain. The woman who almost never stops talking is now forced into silence by a neurological "incident" and a breathing tube down her throat. The woman who lives to model new outfits is now dressed by strangers in a never ending parade of plain blue johnny shirts that are anything but stylish. The woman who makes her way to work every day, despite illness that would drive others to their beds, now just agitatedly mutters "Monday, Monday, Monday" in her brief periods of wakefulness, worried, no doubt, about losing her job because of her extended absence.

There are so many reasons to be sad about Sandra. And we are. Last night at prayer I could see the exhaustion, confusion, and latent tears in so many eyes. I could hear in people's prayers ("I pray for what's best for Sandra...") their uncertainty about where this is all headed and what we should be hoping for. Sitting with Sandra and talking with her family I heard so much anger and frustration - Sandra's life started when she came to L'Arche, they said. An explosion of joy, pride, opportunity, maturity...how could it all be at risk after just a year and a half? And in my own heart I feel all these emotions, too. Anger, fear, sadness, grief. Sleeping with the phone under my pillow in case there's a call. Searching the faces of the people who are managing Sandra's care for for some hint of what is in store for her. And for us.

Then yesterday I sat with Jamie, a newcomer to Sandra's house and one of her most fervent admirers. We talked about how sad it is that Sandra is sick again, and I described how serious the situation is. It was quiet for a minute, then Jamie said, "But she's a fighter, you know. She'll fight hard, Jenn."

Yes, she will.

Sandra has been a fighter all her life. Born with an intellectual disability in the 1950s, yet never doubting her own value. Losing her dad, her brother, and her mom in the span of just a few years yet still seeing the beauty of life. Having to leave her home with just a few days notice to move to the country with a bunch of people she'd never met and whose customs were, in Sandra's own words "pretty strange". And yet embracing our community, and all of us in it, with gusto and generosity and love. Sandra fights because she believes in life, in life lived with abundance (but not vegetables). Sandra fights because she knows she has something to offer to this world, something like humour and music and hard work. Sandra fights because if she doesn't, who will fight for her?

Well, Sandra, we'll fight for you. In a very short time you have talked and sang and cried and demanded and charmed your way into our hearts. And now that you're in there, we won't let you out. We will fight with prayer and laughter and patience and hope. We will fight by shopping and singing and eating apple pie.

And we will be there for you when you need us.  However you need us.

Monday, September 12, 2011

Catherine (Cathy) Brady January 14, 1956 - September 8, 2011

Today we say goodbye to my sweetheart – and your sweetheart – in fact, everybody’s sweetheart, Cathy Brady. Although we have become, sadly, very seasoned at saying goodbye to people we love, our grief is not diminished nor the depth of our mourning lessened today. There is a loneliness that I know we all share today and that will undoubtedly be our companion in the weeks and months ahead. There is some comfort, though, in knowing that as another of our “icons” makes the passage into the communion of saints, she is welcomed by a whole host of incredible people who have gone before her, including her beloved Mommy and Daddy, and at least a couple of Old Hens. Picturing that heavenly reunion does make me smile.

It is no surprise that as we have shared stories and memories of Cathy over these past few days, we have spoken so much about what a sweet and loving woman she was. We have talked about her hugs, the ways she comforted us in our sadness, her sweet little laugh, the many times she tilted her head and said “I love you” or “You’re cute” as she gave us a little pinch on the nose. The condolences that have poured in from Cathy’s friends around the world have called her lovely, gentle, beautiful, tender. And so she was.

Of course, this is not to say she was without her stubborn or even harsh side. Apparently, while still in Bras d’Or, what we knew as Cathy’s walking stick was used in a less angelic way – for vigorously berating whoever was the latest person to anger or disappoint her. She would stomp furiously up and down Brady Drive, wagging that stick in the air and getting all the irritation out of her system, likely at Ricky for not being home when she arrived for one of her twice daily cups of tea. And there was at least one assistant who felt the sting of a slap from Cathy when he stood between her and plate of nachos at a community gathering. You did not mess with Cathy and her food.

But it’s a fine line between stubbornness and independence, and Cathy fell solidly on the independence side. She knew she could do it herself, whatever “it” happened to be. And more often than not, she could, and she did. Everything from opening a Cadbury crème egg to putting away her own clothes to climbing up on the counter to reach a tasty treat on top of the fridge, Cathy was determined to be the master of her own affairs. Having never had the opportunity to go to school, what a testament this is to Cathy’s family that she grew up with such a fierce belief in herself and in her own abilities.

And what a testament to them, too, that they knew their sister well enough to understand her need for growth and friends and a life of her own. To each of her siblings, especially to her dear Patsy (whom we all know by name, if not by sight) I want to say thank you for trusting us with your sister. Patsy told me this week that the decision to have Cathy come to L’Arche was one of the things she did in her life that she could be proud of. I hope it has been clear these past few days all the wonderful things that have come of this courageous choice.

I imagine it was at home, too, where Cathy learned her incredible work ethic. Sure, she liked to relax on the couch and read a magazine – often upside down. And she liked her cup of tea and a cookie, but only as a break between the important work of the day. When we would travel to give talks about L’Arche, Cathy made us seem like more of a work camp than an intentional community. According to her, she spent her time at Corinthian House washing the dishes, cleaning the bathroom, sweeping the floor, and making the tea. This was actually true, of course, but only because it was what she loved.

The work she really loved, though, was at our clothing store, The Ark. How many hundreds of hours did she spend, sitting on an orange chair at the baby bin, folding those tiny clothes just so, with her tiny just-so hands, and just barely tolerating the insolence of the customers who dared rifle through the bin, messing up her work.

When we thought it was time for Cathy to move into retirement, we suggested a day a week at our seniors’ program. When Thursday mornings rolled around, though, Cathy would frequently hide from the van run to avoid the drive to the dreaded Siesta Club. Eventually we relented and she went back to her full time job at The Ark. It is so fitting that, on the last day of her life, when offered the chance to spend the day at home, she chose instead – and quite firmly – to wheel off down the lane to work. You can’t keep a good woman down, and Cathy Brady was a good, good woman.

And more than just a woman, Cathy was also a lady – I think maybe the only one we’ve had around here. She was proper, polite, and had a clear sense of right and wrong. She would feign embarrassment when her picture would show up in a slide show, or cover her mouth demurely should a burp unwittingly escape. She would admonish people with “that’s gross” or “that’s really rude” when she felt they weren’t minding their p’s and q’s. Of course, sometimes that admonishment was self-directed when she just couldn’t hold back from wiggling her behind at the audience in the middle of an otherwise graceful and dignified dance.

Our charter identifies “simplicity” as key to the vision of L’Arche. Cathy embodied simplicity in the very best sense of the word. She did not need big things to impress or satisfy her. Her deepest joy and fulfillment came from a good cup of tea (or even a bad one, for that matter – she wasn’t particular), a snuggle on the couch with a friend, a haircut, a piece of pie with a just a taste of ice cream. She found beauty in a solo walk, either around Brady Drive in or doing the loop of the lanes around Corinthian House. She would somehow saunter gracefully, even on those little tiny legs, trailing her walking stick and swinging her head back and forth to the music within.

And sometimes the music made it out, when she would take a pit stop on the swing and just let loose with whatever tune was in her heart. It was a rare gift to hear her, though, since as soon as she caught sight of a spectator she would immediately stop the song and wait to be alone again. She clearly wasn’t in it for the audience.

This week I read a Hopi Indian saying that “To watch us dance is to hear our hearts speak.” Cathy did not talk a great deal, and when she did it could sometimes be tricky to understand what she said. (Her lips moved in a way that bore almost no resemblance to the words that came out!) But when she danced she said things that words could never express. She danced in the Chapel, in the lanes, at churches, and on stages all over Nova Scotia. She danced to Enya and the Rankins and church choirs and Silas’ guitar and the music inside of her. She twirled in graceful circles, her arms thrown in the air and her eyes always lifted to heaven. And although she danced in front of hundreds of people, and almost always got a standing ovation, I don’t think she was dancing to perform. I think she was dancing to pray. To offer her gratitude and praise and rejoicing for the beauty of her life and the life around her. She danced from her heart, and every one of us who saw it got a glimpse of that heart.

Over the past couple of years, Cathy’s health began to fail. She started to rely more and more on her wheelchair, and to learn to accept help gratefully and gracefully from her friends. She seemed to understand some of her limitations, and took the responsibility of gently teaching the young men at Corinthian House some of what she had learned about community life. And those of us who loved her, and who had seen others make the same passage, were acutely aware of the importance of savouring every moment with this remarkable woman.

So during the sing-a-long at our Community Retreat back in the spring, there was not a dry eye in the Chapel when Cathy took the microphone to sing “Working Man”. That was Janet Moore’s song, and Janet, Cathy’s best friend, had died just a few short months before. But Cathy sang that song without a waver in her voice or a tear in her eye, but with tremendous strength and deep, deep love.

Then it was time for “Swing Low”. For this one, she put down the microphone and struggled to get up from her wheelchair to dance. I will never forget the image of Cathy standing in the centre that day, Gray kneeling behind her and holding her up for an incredible moment of beauty and transcendence. It is such a powerful image of what we all did for Cathy – we held her up with our love and our friendship and our care. But even more it is an image of what she did for all of us.

Rest in peace, dear friend.

Wednesday, June 15, 2011

Flowers for a friend

Arriving at the office on Monday morning, Bernadette and I met up in the parking lot, as we often do. I was coming to work; she was out for her morning stroll, heading up to visit Linda before going to catch the van run. We exchanged the usual pleasantries - "Beautiful morning, eh Bern?" "YES! It's supposed to rain tomorrow, though." (Alas, she speaks the truth.)

I noticed that, in her hand, she was clutching four fragrant and fully bloomed lilacs, picked, no doubt, from the tree outside her house. I commented on how pretty they were, and she informed me that she had picked them as a gift for Linda, so she could put them in a vase in her office. Sweet.

And that was the extent of our interaction. It was, certainly, a pretty ordinary exchange - small talk, flowers, off to see a friend. But that simple encounter has stayed with me ever since and I find myself returning to its lessons over and over. Bern has been living community life for almost 30 years. She has suffered and rejoiced and learned and grieved. And still, she picks flowers for a friend on a Monday morning. She is not too jaded or worn out or busy to recognize the beauty outside her door and be moved to share it with someone.

People are often inclined to compare our people, people with intellectual disabilities, to children. I immediately react - justifiably, I think - against this comparison, as it is disrespectful and misguided. But on Monday I was struck by how Bern's gesture was much like something my own 8-year-old daughter would do. And Bern's simple joy in the gesture was just like what Maggie would show when handing Mom her hand-picked bouquet.

So today I think it is okay to be grateful for the childlike values that Bernadette has managed to hold on to, in the face of all the reasons she has had to let them go.

Wednesday, February 9, 2011

A Match Made in...Community

It's Winter Carnival week here. "Frosty Frolic", we're calling it this year. It's a simple idea, really - set aside a week in the dead of winter to be silly and play in the snow. Put a little work into reminding one another that winter is more than just the inconvenience of shoveling and keeping track of 25 hats and 50 mittens. Winter can be fun!

And so it has been this week. We're just halfway through, but I can say in all honesty that wearing my pajamas to work, dressing up in a Newfoundland flag, and dancing to "Sudbury Saturday Night" in my oversize gold shirt and purple dollar store wig has been just what the doctor ordered. I can feel the good vibes seeping through my thick skin of impatience and discouragement and giving me a little spark of the all-too-elusive hope. Thank God for that.

There have been lots of little moments that have contributed to this mini-transformation. Jurgen carved a huge bench in the snow outside Asha House so folks would have a spot to sit at the opening bonfire and fireworks. Joan, Judy, and Bern were table-dancing at the Fire Hall, to gales of laughter and thunderous applause. David wore a Toronto Maple Leafs cheerleading outfit - complete with pleated skirt! - to work yesterday. When the opening notes of the Black Eyed Peas' "I Like To Move It" blasted from the speakers at the dance, Gordon's face lit up with a smile and he jumped across the floor exclaiming "Madagascar!". And the list goes on.

But the moment that moved me most was simple. If you weren't paying attention you could miss it. It was on the dance floor at the Frosty Frolic Ball, where everyone was all dressed up fancy (including me in the aforementioned gold ensemble). Coralee was out on the dance floor, wheelchair left in the dust, boogie-ing down holding the hands of a young German assistant for support. She looked young and hip - which she is - and happy. While I was watching her, Julian, a handsome young assistant in his second year with us at L'Arche, approached her with a smile. Any girl would be thrilled to have this guy seek them out on the dance floor. Julian, towering over Coralee, reached out his hand and asked her to dance. She turned her head up to say yes (duh!) and there was just this little moment that passed between them. It was as simple as a smile, but it was a smile that didn't come from the mouth, or even from the heart. It came from some other mysterious place where two people who shouldn't have even met manage to cross paths and share a life and find in the other something neither of them knew they needed. I couldn't help but be overwhelmed by how lucky each of them were, and how lucky I was to be a witness to their relationship.

Sometimes I take this life for granted. But sometimes something happens that reminds me of the gift of L'Arche. Julian and Coralee reminded me of that last night. Thanks.

Monday, November 8, 2010

My teacher, my friend

Mary Cecilia (Bomber) Leblanc
November 10, 1950 - November 4, 2010

And so, again we gather here in our little Chapel to say a last goodbye to a sister, an aunt, a co-worker, a friend. Just a few days ago, many of us sat in these same seats on All Souls’ Day, the altar covered with pictures of our community members who have died, remembering and giving thanks. Mary sat in our midst, snoozing on and off in her wheelchair, enduring the wet weather to be here among friends. Now Mary has gone to join those saints and it is her picture that sits in the place of honour.

To remember Mary’s life is surely to remember a mystery. Mary was a small woman who was larger than life; a silent woman who spoke volumes; a deaf woman who spent an awful lot of time telling people to be quiet!

One thing we can say for sure is that the story of Mary’s life was not without pain and suffering. Her family, many of whom we are so grateful to have with us today, know only too well how Mary’s early life was touched by tragedy, losing her parents when she was only three and then moving suddenly to institutional care.

But clearly, somewhere along the way she made a decision – that she would not let the circumstances of her life define or limit her; that she would stand up to those who tried to keep her down and say, albeit without words, “You’re not the boss of me!” In the disability field today there is so much emphasis placed on self-advocacy – truly, Bomber was a self-advocate before her time.

Some of us have heard stories from her 30 years in institutional care – that the only way staff could get Mary from place to place was to have two or three men toss her in the laundry bins and wheel her; that janitors were forced to wax floors with Mary sitting on the waxer, as they were unable to get her off; even that employees who worked with her threatened to strike unless they were paid more for the stress and strain of dealing with her demands. I suspect many of these stories are apocryphal, but even if the details are exaggerated, the point they illustrate is true!

Those people who lived and worked with Mary during her first 20 years at L’Arche can vouch for that. Many people – myself included – were afraid of Bomber, nervous of the inevitable disagreement over seating arrangements, utensils, wardrobe choices, bedtimes, or a host of other seemingly inconsequential matters. Monica speaks of hiding in the kitchen at Thomas House, lights off, hoping against hope that Mary would stay in the living room; Rachel has been held hostage in her car outside Waycobah House, Mary refusing to exit the front seat despite the best efforts of a crowd of assistants surrounding the vehicle. And Mary has left her mark – literally – on many of the assistants who have supported her over the years.

Over time, we all learned some of the tricks to get us out of a stalemate with Mary. Laughter was one option, and the most reliable way to elicit a laugh was generally to feign serious injury. More than one person has been shot by a stray bullet just to convince Mary Leblanc to get on the van! Another possible peacemaking solution was to offer Mary sympathy, sticking out your lower lip and showing her that you were sorry.

Of course, many of us immature assistants resisted both these options – we knew we were in the right and we didn’t just want the incident to end, we wanted to win! We wanted Mary to be the one to surrender. We soon learned that was not going to happen. And why should it? Mary had had enough of being on the losing end of life’s battles – why should she let some kid take another piece out of her dignity and self-determination?

Of course, Mary’s fierce streak could sometimes work to your advantage. When you were in her good books, she would go to the wall for you – that little leg swinging out to protect your seat; pillows flying through the air at others in your defense; those fat, arthritic fingers flicking water across the table (although not before shaking off all the excess so it wouldn’t make such a mess). The problem was , you never knew when you would be in her good books, or how long that would last. It was Mary’s prerogative to change her mind.

I like to think that Mary’s death was her final act of defiance. For some months now we have been in discussions with the Department of Community Services about whether Mary’s needs would be better met in a nursing home. Her family and her community were strong advocates for supporting Mary in her home at The Vineyard. And yet, the process was moving forward. On Thursday, November 4th, Mary’s case was being heard, and it seemed obvious that she would be placed on a waiting list for nursing home care. Instead, on Thursday, Mary died – the first thing in her life she ever did in a hurry. A pretty powerful act of self-determination.

But Mary’s tough streak did not define her. For people who stayed with her – and we did – there was such tenderness, humour, and beauty within her.

How many of us were the privileged recipients of her speeches when the candle was passed at a birthday party? On the outside, each person got the same delivery – the lips moving, that barely perceptible sound, a slight smile every now and then, a little laugh. But each of us who received that speech heard something different – we heard in her unutterable words our own beauty, the faith she had in us, her words of encouragement on this tough road of life.

And how many of us felt that soft tickle of her breath against our faces as she whispered unknown secrets in our ears, then pulled back to see her put her hand over her mouth, eyes wide, encouraging us to be just as scandalized as she was about the secret she had just shared?

How many of us heard that incredible laugh, the laugh that she couldn’t hear but that she certainly felt, the laugh that bubbled up from her toes when she really got you good, or when things got silly on the couch and there was wrestling and tickling and all sorts of foolishness.

How many of us saw her wearing a big goofy sign around her neck, announcing “Kiss Me! It’s my birthday!” and the delight in her eyes when you leaned in for hug and a smooch.

How many of us were at The Vineyard or Thomas House when her family would come to visit, laden down with enormous bags of cheezies and new clothes, and see the pride in Mary Cecilia as she claimed her people, and showed them off to us.

How many of us saw her wearing headphones, snapping those little fingers and grooving to a non-existent beat?

And surely, all of us were well aware of Mary’s altered sense of time. An hour went by like a minute, and no amount of time was too long to spend rearranging the place settings just right, moving the pillows on the couch ¼ inch this way or that, getting those hospital corners just so on her freshly made bed.

As Mary aged, the hard edges of her personality softened more and more. She became increasingly a woman of vulnerability, a woman who liked hand and foot massages, who drew people to snuggle on the couch, who graced so many with her gentle smile and tender hugs. She let go of the details – of finding every hole in every sock or every chip in every plate – and instead chose to focus on the bigger things: loving and being loved, sitting vigil with friends making the passage to the next life, holding hands with friends she loved, teaching the young men in the community how to be tender and how to cry. Indeed, when Mary died and we were washing her body and getting her dressed for visitors, there was a line-up of five young male assistants waiting to sit with her, heads bowed and eyes brimming. Because of Mary Leblanc, they will never be the same. And neither will we.

One of the former assistants who wrote to us about Mary this week said that, for her, Mary is an iconic person, in a literal sense – her life points to some greater, ineffable reality. The truth that Mary has revealed through her life is indescribable. As Helen Keller once said of beauty, it cannot be seen or even touched. It must be felt with the heart. And Mary taught us how to feel it.

Our little community of L’Arche Cape Breton has lived with tremendous grief and loss these past few years. Sometimes I wonder, is this what I signed up for when I said yes to L’Arche? Saying goodbye over and over to people who have become my family? Looking around and knowing that this journey of grief before us is still long? Sitting with a friend in the Chapel as he struggles to understand the mysteries of life and death, tears falling silently down his cheeks, and knowing that I cannot take away his pain? Bringing my kids to wakes and funerals and wishing things were easier?

But then I think of Mary. How can I compare my suffering to hers? How can I wish to have not lived this pain, if it means not to have known her? How can I say that I want to walk this journey with our people if I am not willing to embrace everything about the journey? I need to trust that the silent example of Mary Cecilia Leblanc will give us all strength to continue to love, to struggle, and to open our vulnerable hearts to each other.

Mary hated the light, hated opening the curtains first thing in the morning or driving without the visor down. She would demand her hat and sunglasses, or squint those little eyes against the assault of the sun. Just before Mary took her last breath, she did just that - screwed her eyes tightly shut. I think she saw the light, and in typical Mary fashion, it really bugged her. But I imagine that Janet Moore was there to beckon and reassure her, and that Marian Turnbull is holding her hand, and that, when it comes my time, there will be Bomber, leg swung across the seat next to her, saving me a spot.

Tuesday, August 24, 2010

Don't swear to God...Janet Moore is up there!

The end of August is always a transition time. In L'Arche, it's the departure of one crop of assistants and throwing open the doors to welcome a new crew. In the family, it's buying pencils and duo-tangs and new jeans for the much-anticipated back to school. And in nature, the evenings get cooler and the leaves, regrettably, start to show hints of turning colour.

But even though I am an old hand at the end of summer change, this year I feel that transitional dis-ease in much deeper way. Over the past few months, I feel like I have been confronted with all these "opportunities" to look at myself and my life in a deeper, more honest way. Am I satisfied with where my life is today? Am I an active participant in deciding where I am headed, or do I just let the current carry me along?

For sure the event of the summer that really stirred me up happened in July. My friend Janet died. (I've written about Janet before, here and here.) More than a friend, Janet was a babysitter, an entertainer, an inspiration, and the founder of this community that has become my home. Her death, and also the days and weeks leading up to it, marked a passage in my life and the life of my community, and has pushed me to live up to Janet's example of a life of intention and engagement.

Janet's death was not a tragedy. She lived a good life, and she had a peaceful and sacred passage from this life to the next. We supported Janet with dignity and helped create an environment where she could reveal her gifts and thus transform the people and the world around her. But still I am sad. I miss Janet. I don't want her to be gone. I want her to me at my house, snuggling with my husband on the couch when I pop in for lunch asking me "What are you doing here?" I want her sitting next to me in the Chapel, holding my hand and checking me out for a good long time before realizing, "Jenn Power! It's you!" I want her to reach out for kisses and hugs from my boys, to marvel at Maggie's accomplishments, to ask, "Today Thursday?"

Instead, she lingers just at the back of my mind and the middle of my heart, reminding me to stand my ground; choose life; allow others to help me, even when I don't want to; be faithful to my friends; celebrate every small victory; be silly at least once a day; give my kids a lickin' when they deserve it. Janet Moore set the bar pretty high and now I need to do my best to reach it.

There is so much more to say about Janet. Maybe I will just post the Words of Remembrance that Silas wrote and shared at her funeral. He said a lot. Here it is:



Janet Evaline Moore
July 17, 1947 – July 16, 2010


I am deeply honoured that Wilma and the rest of Janet's family have trusted me with the task of remembering Janet in words. It is a privilege and it is also a burden. These words have been difficult to write. Writing them means I am saying goodbye to this woman, and goodbye is the last thing I want to say.

I am not unique in holding Janet so dear. As we sat with Janet this past week and more we have been overwhelmed by the messages and visits we have shared with her. So many people, from her own baby sister to the priest who is celebrating this service with us today, to the many children she has “lovingly and firmly” babysat, to the dozens of former L'Arche assistants who are spread across Canada, England, France, Germany, Poland, Finland, and Australia, say they wouldn't be the person they are today if not for Janet.

How is it this one little woman has meant so very much to so very many people?

Janet had many qualities that made her who she was. She was a woman of character, a woman of charisma. She was a woman with dignity and stateliness, a sense of self-worth that was not grasping or competitive (Of course she also knew how to be silly.). Janet was a woman of determination, and a skilled negotiator. Crossed eyes and a furrowed brow were never so eloquent or effective as on Janet Moore. Janet was a woman of music and of laughter (“There's a snake on your back!”).

If all I had to do here was to tell the stories we've been sharing these last days, I could keep you here for a week. I never knew a woman who had so many stories told about her.

Some stories are just one word. Janet had a way of making up her own words, especially names. My name, by the way, is “Salad.” Over there you see Vince Smith, or “Prince Sniff.” Neither of those is as much fun as her old minister, Wim Creeft, who went by “Wimp Creep.” (“I saw my missiner today, Wimp Creep!”).

Some of Janet's stories are just one line. Janet's lines were very important to her. Good luck becoming Janet's friend if you hadn't learned her language. “You old hen!” “Wash it, you're older than me!” “Are you cracking up?” “I cracked up two weeks ago.” “Now you're cooking with gas.” “Put that in your pipe and smoke it.” “I can't smoke!” “Sorry about that, chief.” “Are you feeling okay??” “I swear to God, Janet.” “Don't swear to God.” “Why?” “My parents are up there!”

Other stories are summed up in one line, although really there's more to tell: how she began her university talks with “Good morning boys and girls, my name is Miss Moore.” How she described her nephew: “Michael George, he works in the army. Yep, he shoots people.” Or: “That Anne Gunn, she's preg-a-nant again.” Or: “That weatherman should be shot. We should take him to Louisbourg.”

Some stories really are stories, and they need to be told. When our community was in its infancy, with just Janet and Tom and Anne and a few kids, Jim and Elsie came to Corinthian House for a meeting. They had trusted Tom and Anne with their daughter for one month, and this meeting was a chance to sit down and see whether that trust had been well-placed. Toward the end of the meeting Tom asked Janet if there was anything she would like to say. Well, yes, there was. With all the earnest gravity of her 34 years and her extra chromosome, Janet looked her parents in the eye and said, “Mom, Dad, Tom Gunn took advantage of me.” As Tom's heart sank into his boots, along with his shattered dreams of community, Jim and Elsie knew that for Janet, being taken advantage of meant that she hadn't always gotten her way, but had had to learn to compromise. Trust well placed.

There is another story that I think says even more about Janet, one I heard just this week. Janet always valued official processes, and having her voice heard by the authorities, and as we all know, she would get most exasperated with the people she was the closest to. On one of her weekends with Wilma and John, Janet complained so much about her housemate Angus that finally John said, “You know what, Janet? I'm going to put him in the book.” He took out a little book that had the Nova Scotia Power emblem on the cover, and wrote down Angus' name. Well, that was just what the doctor ordered. For some time thereafter, whenever Janet would get especially frustrated with a person or a situation, John would write it in the book, and Janet's troubles would be over. One fateful day, Janet's baby sister Wilma got her name in the book, I'm sure for being too cranky, or for bossing Janet around one too many times. But touchingly, before she went to bed that night, Janet came to John and made him take Wilma's name out of the book.

We can all be grateful that Janet was a woman of family. She was loved well her whole life long. At a time when parents were given no encouragement or guidance whatsoever about disability, Jim and Elsie somehow knew in their bones that Janet was theirs, that she had value, and that she belonged at the heart of their family. Wilma has described to me how she and Janet grew up more like twins than ordinary sisters, sharing a room, sharing toys, sharing friends, sharing walks to the store or to Sunday school (and later, sharing boyfriends, if Janet had had her way). Janet was loved much and well.

Janet was a woman of family, and therefore, a woman of community. Janet knew she was the Founder, and she carried that role with dignity, as a responsibility rather than a title or a privilege.

In L'Arche we talk about three pillars of community life: welcome, celebration, and forgiveness. Even after 27 years, and who knows how many people had come and gone from Janet's life at L'Arche, she still invited people in. She still delightedly told everyone “You know what? I got a new girl!”. (This year, as it grew harder and harder for Janet to learn names, Tommy was surely glad when Freda arrived, so that he was no longer Janet's “new girl”.) Could anyone celebrate like Janet? Who else could take so much delight in a meal, in a song, in a tuppa tea, in a balloon birthday hat? As for forgiveness, although she may not have been good at choosing the words (“I'm sorry. Now don't do it again.”), in her heart she forgave us over and over again. How else could she keep opening that heart? Janet took the love she received from her family and brought it here. Now look what it has grown.

Janet was a woman of generosity, with her love, especially for babies, with her home and her community, always glad to share it with someone new, and with the spotlight, which she loved but which she also loved to share.

She was a woman of faith and faithfulness, a member of the United Church who mainly attended Presbyterian services, and who got a blessing at every Catholic Mass she could get to, and who is finally being celebrated today by a Catholic priest and an Anglican.

Finally, Janet was a woman of strength and of weakness. At L'Arche we often speak of the weak or the poor, two words which I think apply poorly to Janet Moore, at least in her prime. But she did always have her worries – anxiety about whether it was Thursday, whether it would rain, or God forbid, whether there would be thunder. So much of Janet's life was a search for security, an attempt to keep her fears at bay by drawing good people toward her, people she knew would help her to be safe. She brought people together through her reliance on them.

In her latter years, Janet became more and more a person of weakness. As she grew older, Janet gradually lost much of her sight, most of her words, and almost all of her independence. These were often difficult times for Janet, as her anxieties did nothing but grow, and her ability to communicate those anxieties, or to receive comfort, diminished. But they were not without their beauty.

Over this past year I have been touched again and again by the tenderness of this woman, who had always been so tough, tolerating no nonsense, and certainly no mushiness. I first noticed how our early morning banter, as we left her house each Wednesday for our babysitting day, went from joking to serious. I used to call out, as if I were Janet's voice, “Goodbye, Katie! Goodbye Tommy! I miss you! I love you!” and Janet would say, “Oh stop it. You sound 'idiculous.” But this year she hardly ever crossed the threshold without saying it herself, “Goodbye! I love you!”

As Janet needed more and more help to get through her day, much to our surprise, this independent woman accepted our help with grace and gratitude. She held fast to the tiny accomplishments of an ordinary day, where just getting into the van, or making it from the couch to the table, was something to celebrate.

At a certain point in my relationship with Janet she began to need help in ways I never thought I would have to help her. I had to choose between my discomfort with intruding on Janet's dignity, and my desire to preserve our time together. I chose for us to stay together, and one day, as I was helping Janet, and feeling awkward and embarrassed, Janet turned to me, and with eyes brimming, said simply, “I love you. I love you. I love you.”

Janet lived through her death just as well and wisely as she lived her life. Bathed in the love of family and friends, and surrounded by music, Janet quietly, peacefully, held on for all she was worth. I've been joking this week that I never knew someone who came to her own wake before. But that's what she did – she gave all of us a chance to say goodbye.

Cathy Brady had a chance to sing, to pray, and to weep over her. Ed had a chance to make up a new song as he sang it to her. And Mary LeBlanc made her love for Janet complete, and this will be my last story. Mary's own health is not strong, and her communication is limited, as arthritis has all but eliminated her ability to sign. She gets things across mainly by facial expression and by literally digging in her heels when she needs to. When Janet took to her bed at the end, Mary, whose room was across the hall, refused to sleep. For four nights running, Mary didn't sleep, and none of us knew what to do. Finally someone thought of putting a cot beside Janet's bed, and there Mary happily lay down and slept like a baby.

Last night we waked Janet at home. As the evening grew later we tried to help Mary to bed. Three times we wheeled Mary down the hall, and three times Mary dug her heels in and refused to go to her room. Finally Jenn asked her if she wanted to go to Janet's now empty room instead of her own. Mary happily agreed, and then just as happily got in to Janet's bed, where she spent the night.

I don't believe Janet would think much of this eulogy, neither the length nor the sentimentality. Janet was always matter-of-fact about death, and I will close with the few words I have heard Janet say about many a dear friend who has “gone up to heaven” ahead of her. I believe she would say: Whissht! Up she goes! Now don't swear to God, because Janet Moore is up there.

Friday, February 26, 2010

"It's the eyes that I have..."

Tanya and Coralee and I get together in the lounge at The Angel’s Loft, a room of quiet in the midst of a hectic (noisy!) workplace. I choose the armchair, and Tanya and Coralee settle themselves on opposite ends of the fancy leather couch to share with me their thoughts on friendship and each other.

Tanya and Coralee met earlier this year, when Tanya arrived as a participant in our day program. Although neither of them can recall the exact moment when they were first introduced, they both agree that they have become friends over these past few months, meeting at the numerous parties and celebrations that inevitably pop up when you get involved in L’Arche.

Although they still seem a little shy, they are happy to share what they appreciate about each other. "She’s funny and kind," Coralee says when I ask what she likes about Tanya. Tanya looks skeptical.

"Well", she replies seriously, "kind, but not funny."

"What do you like about Coralee?" I ask.

"She looks beautiful!"

"Yeah, I do. It’s the eyes that I have." Coralee knows how to accept a compliment.

"Plus, she’s kind and friendly, and laughable! She jokes around," Tanya continues.

"Yeah, I like to laugh and carry on. I always tease people. I tease either Rebecca or Rodney. Rodney is the biggest teaser I know!" Tanya smiles as Coralee entertains us with tales of the mutual poking fun that happens at Korban House.

As we talk more about what friendship is, Tanya and Coralee agree that a friend is someone to keep you company, someone who is always there so you don’t have to be alone. Friends are there to help you, to laugh with, to go for walks and play games. Friends can go shopping together. "For underwear and socks and bras!" laughs Coralee, "pink lacy ones!"

Tanya is scandalized, "I wouldn’t wear those!"

They also recognize that friendship can sometimes be a struggle. "They are hard to come by," Tanya notes. "Some people might be your friends for a little while but then they turn out to be the opposite. That happened to me. Made me feel confused. I don’t want to say I hate them, but it was upsetting."

"Or sometimes friends die." Coralee speaks from experience.

Tanya nods in agreement. "Yeah, like Michael Jackson, he’s gone. He was a good singer, a good dancer too. Although he screwed himself up pretty bad."

Our time is drawing to a close and I ask the ladies if they have anything else they would like to add. Coralee is anxious to get back to work, but Tanya wants to make sure I have it clear. "I’d be lost without Coralee and all my friends. Ever since I came here there are so many friends, it’s like home."

Monday, January 18, 2010

Sticks and stones may break my bones, but words can REALLY hurt me

On top of all the discussion (and it has been such good discussion) about disability and cures, what it means to be human, the value of a life lived with Down Syndrome, the human need for "perfection", the past week has also opened up an exchange about the use of the word "retarded". Let me come out strongly and vigourously against that word, right off the bat.

What arose this past week revolved around the use of the word "retarded" in a CBC radio comedy sketch. Someone (thank goodness!) wrote in to express their disappointment that the CBC would allow the use of such a hurtful and discriminatory term. In response, a couple of listeners wrote in to oppose that individual's opposition. They suggested that "the problem is not with the word, but with people's attitudes". One of them argued that "politically correct language doesn't change the seriousness of conditions like Down's [sic] Syndrome. I would hope that CBC would strive to use language that accurately describes reality rather than language that obscures difficult facts in euphemisms."

The phrase "person with an intellectual disability" is not a euphemism that obscures a difficult truth. People with disabilities suffer such discrimination and marginalization in our society that we don't need to worry about disguising any harsh realities - they know the cruelties of life first hand, and face those harsh realities from the day they are born. Of course, neither is "person with an intellectual disability" a perfect term. For example, it still contains the term "disability", a label with an inherently negative connotation. Who else among us is defined by what we cannot do?

But like all knowledge, language is always evolving. As Silas wrote, "Try reading almost any book written more than 30 years ago without noticing the glaring use of only masculine pronouns, where today we would write "he or she". This change in language both reflected and extended a change in attitudes that took place as our society began to recognize the equality of the sexes. Language changes all the time. Sometimes we have to do it consciously and explicitly, so our language can catch up with our politics." Hopefully someday we will find a way to talk about people with Down Syndrome or people with autism that won't immediately conjure an image of a damaged, limited, less-than-whole individual. Hopefully we will find a way to talk about our people as, well, people. Of course, that will only happen as our attitudes toward these devalued groups of people change, and that change won't happen unless we speak out.

In the meantime, let's follow the example of People First, one of the only advocacy networks for people with intellectual disabilities which is totally run by the people for whom they advocate. For them, people first language is so critical that they chose it for their name. We need to listen to this too-often unheard voice of people with intellectual disabilities, who always have people speak for them and about them, but so rarely have the opportunity or the ability to speak for themselves and actually be heard. (You have to look hard to find folks with intellectual disabilities weighing in on this particular issue. But this five-minute video is a wonderful example of self-advocacy.)

Again, I quote Silas: "The deletion of the words "retard" and "retarded" from the English language is long overdue. These words belong to a bygone era, a time when the medical community, and society, regarded people with disabilities as diseased errors, subhuman. Today they are nothing but schoolyard insults, dripping with hatred and oppression. Sure, some people who use them don't mean it that way, but most do. We should respect the right of people to choose the term that will apply to them. If you wouldn't call someone a "cretin", an "imbecile", or an "idiot" (terms with a similar history as "retarded"), if you wouldn't say "negro" or "Jap", then don't call someone "retarded"."

Friday, January 15, 2010

The Motherlode

So, through a series of connections that are not quite clear to me, my post from Contrarian about a possible "cure" for Down Syndrome was picked up by the New York Times blog on parenting, called Motherlode. Quoting me as well as Dr. Salehi, the author of the original research study, the post asks "If there were a cure for your child that would fundamentally change who he is, would you welcome it?"

Parker Donham, Contrarian blogger (and my father-in-law) contacted me to give me a heads up about the post, in particular to warn me that there were reams of comments on the NYT post, all of which were firmly entrenched in the opposite position to myself. He was afraid I would be hurt. I had no such fear. I know that my position is a minority one. When you throw your lot in with marginalized people, you get marginalized. I understand that. And I would suspect that NYT readers might be particularly unsympathetic to an argument that asserts the value of people with intellectual disabilities.

But booting up my computer the next day and clicking on the Motherlode link, I was surprised by my own reaction to the comments I read. It is not easy to hear people, even strangers, call you selfish, patronizing, uncaring, a bad parent. Especially when people call you that in very articulate, well-written letters to the New York Times. I will admit, I was hurt. I couldn't make it past the first page of comments. And aside from being hurt, I was unsure of what to do next. Do I respond and open myself up to further criticism? Do I ignore it, knowing that the online attention span is even less than the proverbial fifteen minutes? But what about my supposed commitment to advocacy? Do I cut and run as soon as it gets difficult?

Well, thank God for Silas. Just as invested as I am, Silas took the bull by the horns and posted his own comment to the NYT blog. (His is the only comment, by the way, to be highlighted by the author of the original post.) He also contacted other friends and activists to ask them to weigh in on the conversation, in hopes of providing some balance.

If you go the Motherlode blog you can read the original post and the comments. You might even want to register and make your own comment. Following you can read what Silas wrote. And further down in this blog you can read my original post that has caused such a stir.

I should say that I think I am over my original shock and hurt at the harsh critique of my position. I have heard from people, both directly and indirectly, who share my unfortunately minority opinion. And I have seen even more clearly what a dangerous place this world can be for people with intellectual disabilities.


Silas's recent post...

First, the disclosure: I am Jenn Power's husband, father to Jacob and Josh, and son to contrarian.ca, the blogger who got all this started. I have spent my adult life living and working intimately with people who have intellectual disabilities.

Many of the contributors to this discussion seem to be imagining a magic pill without risk or side-effect that would remove the intellectual impairment associated with Down Syndrome. Medical treatments like that do not exist. Of course Jenn and I want our children to have every advantage, and the fullness of potential, which is available to them. Our boys have glasses, they have tubes in their ears, they attend school as well as physio-, occupational, and speech therapy, a clinic that focuses on eating difficulties, an adaptive swim program, a youth group, church, friends' birthday parties, etc. I home-schooled them for a year to get ready for regular school. But we would not let an enthusiastic medical researcher take a potential chemical blender to their brains in infancy. Thank you, no. In that sense, our boys are just fine the way they are.

Many of you have posed questions from the imagined viewpoint of a person with a disability: if you had Down Syndrome, wouldn't you want to be "cured"? Can you imagine a person with no legs NOT wanting a treatment that would give him legs? It is a sad observation that the voices of actual people with disabilities are usually absent from discussions of this type (thanks to Ingrid in San Francisco for bucking that trend). In fact, their answers to these questions are often not what you would expect. I first contemplated that idea when I heard a CBC radio piece produced by Dave Hingsburger, a counsellor and disability rights activist in Toronto. Over the course of a two-hour program, Hingsburger talked to many members of the disability community, including people with Down Syndrome, as well as a man who has no legs. At some point in the course of other discussions he asked each person he talked to whether, if presented with a pill that would get rid of their disability, they would take it. Without exception, they all said no.

At the time, this was an earth-shattering notion for me. But the fact is that I know many people who have intellectual disabilities. No-one I know sees themselves as diseased, suffering, or in need of a cure. So who is really imposing their viewpoint here?

Jenn framed her response to this medical research in terms of the benefit she has received from her relationships with people with disabilities, and the benefit society as a whole stands to gain from them. Unfortunately some of you have construed that to mean that people with disabilities should be kept in a limited, suffering state so the rest of us might benefit. Several of you even made the very hurtful comparison between our boys and "therapy animals".

Perhaps it is a symptom of the way people with disabilities are devalued in our society that we so often feel the need to justify them by naming the benefit other people receive from them. No other group in society needs to do this. However, that is not the basis by which we make decisions about our boys' lives. Everything we do (including the hypothetical rejection of experimental brain treatment) for them is with their best interests at heart. And to respond to other posters, we have not forgotten what might happen to our boys when we are no longer around. That is why our whole lives are devoted to people with intellectual disabilities, from our parenting to our professional lives with L'Arche to our involvement in the local school to our involvement in discussions such as this one. A society that recognizes the gifts of people with disabilities is one that goes beyond inclusion and tolerance to real relationship.

People are complicated organisms. Tinkering with one aspect affects a host of others. As a society we tend to overvalue independence and intellectual competence. These things do not bear a linear relationship with happiness or quality of life. There are a lot of independent people who lead very lonely lives. In my experience of people with intellectual disabilities, the ones who are more capable and independent are often the ones who have the hardest time finding a place of belonging, and who therefore lead lives of greater suffering. I don't mean to say that capability is a bad thing; I just mean that it is complicated, and that makes the ramifications of this treatment hard to predict.

We don't know whether this potential brain treatment will lead to greater quality of life for people with Down Syndrome. We don't know what its risks and side-effects might be. We do know that people with disabilities are undervalued, insufficiently supported, and too seldom consulted or in control of the decisions that affect their lives. Why don't we put more work into supporting the weaker members of society, combating bullying and abuse, and discovering and learning from the experience of people who have disabilities, and get less excited about expensive, unproven treatments that may do more harm than good?

Sunday, November 29, 2009

Two Maggies!

I have always felt that a person’s name should hold some significance. I love to hear the stories of how people were named, who they were named after, what inspired their parents to choose that particular title. So, when my daughter was born, I wanted to choose a name that would help to express my hopes for her, a name that would give her a great story to tell in a few years, when she is sitting around the circle at a L’Arche new assistants’ meeting.

And so, my daughter’s name is Maggie, a symbol of my hope that she will grow up to embody some of the qualities I love in her namesake and my friend, Maggie Rose Sutherland.

Maggie Rose is a woman of beauty – rich brown eyes, thick dark hair, a figure that most 50-something-year-olds would give their eye teeth for. But her beauty is not just in her killer looks. Maggie’s beauty extends to where it matters most- the inside.

Maggie has tremendous inner freedom. She expresses her joy with exuberance, and her anger with a similar level of abandon. She is not afraid to be sad, or lonely, or elated, or eager. With such radical self-expression, there is often friction between Mags and those around her. Luckily, Maggie also knows how to forgive, and how to accept forgiveness from others.

Maggie knows what she needs: good fiddle music, visits from friends, root beer, time at Waycobah House, constant encouragement and reassurance, someone to keep her company, things to look forward to.

Maggie has a great sense of humour (slapstick being her favourite), an eye for detail, a winning smile, a gift at the microphone, and an ability to make a grand entrance. Not surprisingly, she is widely known and fiercely loved by some pretty incredible people. If you are on that list, you know how good it feels to be friends with Maggie Sutherland.

If my Maggie can catch even just a little of that spunk and style, she’ll be a lucky girl.

Thursday, November 26, 2009

It all comes down to people

I wrote this as a response to a posting on the blog "Contrarian" about news that "a Stanford University research team has made headway toward a potential treatment for the intellectual impairment that is one of the symptoms of Down Syndrome". You can read a brief description of the study, and the resulting blog post, at Contrarian.

As you know, I have many years of history supporting people with intellectual disabilities. Through my connections with these remarkable people, both personal and professional, I have become more and more convinced of the fundamental human dignity present in each person, the vital importance of diversity among the human race, and the particular and irreplaceable role that folks with intellectual disabilities play in creating a more humane, compassionate, and hospitable society. It is clear to me that, as a society, we need what people with intellectual disabilities have to offer.

Before we welcomed Josh and Jacob into our family, I might have had a much easier time responding to this particular piece of research. But as a mother of two little boys with Down Syndrome, boys whose identity, personality, appearance, is linked to that extra chromosome, my ability to rationally argue my point is seriously compromised. I find it hard to read this article without hearing a judgment on the value of my children, children who have transformed my life and the lives of many others – for the better – with the help of an extra chromosome.

In the debate surrounding disability – prenatal screening , euthanasia, etc. – there is an assumption that we all agree on a definition of what is good, what is better, what is the ideal. Who decided that smarter is better? Who decided that independence takes precedence over community? Who decided that both the individual and the society are better off without Down Syndrome? I would assert that something important is lost as our genetic diversity diminishes. I would also assert that people with disabilities may not themselves choose to be “cured”. Bioethicist and disability activist Gregor Wolbring, who happens to have no legs as a result of the effects of thalidomide, asserts that, if given the choice, he would want to remain “disabled”. He feels it gives him an evolutionary advantage, even, as it allows him to weed out the “jerks” who treat him differently as a result of his disability. He poses the compelling question, “What exactly is the problem? Is the problem that I have no legs, or is the problem that I live in a leg-dominated society?” Similarly, what exactly is the problem with Down Syndrome? Is the problem that my boys have a low IQ, or that they live in an IQ dominated society?

I believe that our lives are lived not only for ourselves, but for others. My experience with people with intellectual disabilities is that their lives enrich the lives of others, and of the world around them, in significant and irreplaceable ways. I see this everyday in the school where my boys are in Grade Primary. I see how their presence brings out compassion, kindness, even tenderness, in the older kids at the school. How much money do we pour into anti-bullying strategies? Why do we not see the important ways that kids with disabilities help to reduce bullying in schools? In my position as a member of a L’Arche community, I hear over and over how the witness of our people with intellectual disabilities, and the relationships they have with those of us who support them, enrich the lives of the people around us. People speak- often with eyes filled with tears – of how our people help them understand truth, hospitality, and freedom. American disability activist Jon MacKnight can give example after concrete example of how people with intellectual disabilities have enhanced the efficiency of hospital communication, improved performance of local symphony orchestras, even lowered the crime rate in major American cities.

In the end, for me, this all comes back to people. Josh, Jacob, Mary, Cathy, Kate, Janet…these people have Down Syndrome. These people are my family, my friends, my teachers. Without the benefit of that extra chromosome, they would not be who they are. Their intellectual “impairment” gives them an insight and an emotional intelligence and maturity that I can only aspire to. They do not need a needle in their brain to make them more functional, to help them find their car keys. What they need is a society that values what they have to offer. I would like to think that I can be a part of creating that society.



Silas also weighed in on the topic:

A person's view of this type of medical research depends on whether one sees Down Syndrome as a disease or as a natural genetic variation, like left-handedness or hair colour. Most people in our society fall into the first group, but then, most people in our society don't know much about people with intellectual disabilities. I suspect most people in our society wouldn't imagine the second group exists. It is my experience that most people who have Down Syndrome, and most people who have a close personal relationship with someone who has Down's, fall into the second camp.

This is related to one's ability to appreciate the unique gifts people with Down Syndrome offer to those around them. We do not see them, nor do they see themselves, as people who suffer from a debilitating disease, or as incomplete attempts at humanness. We see them as complete human beings who have a unique experience and viewpoint. Trying to "cure" this condition seems as foreign as trying to cure maleness, left-handedness, or homosexuality.

Contrarian asks why, if we would fix a cardiac problem which is related to Down Syndrome, we wouldn't we do the same for a cognitive impairment. A cardiac problem can be fixed without much effect on the patient's personality, but a cognitive impairment is quite a different thing. Try putting the question of Down Syndrome aside. Imagine your son or daughter has just been born, and an enthusiastic and brilliant doctor proposes a radical new treatment that will enhance your baby's cognitive abilities. "All we have to do," she says, "is regularly inject this
chemical into your child's brain. It will radically alter his/her ability to think and learn. We can't predict what else it will do, as we've never tried it on a human subject before."

To agree to such a radical and risky treatment a parent would have to see his/her child as someone profoundly defective, that the probable course of that child's life would be one dominated by unbearable suffering, without redeeming value. That is simply not the reality of Down Syndrome.

People with Down Syndrome are important and healthy members of society. My life is filled with stories of people whose lives have been altered by their relationships with people who are weak and dependent, and who, partly by virtue of that weakness, have something unique to offer those around them. In a world where no-one is weak, how can we learn co-operation, humility, and compassion? These values are hard to quantify, and therefore they are hard to stack up against the very concrete "deficits" attached to disability.

Our society tends to place an exaggerated value on independence, and to do a poor job of including people who are different. A society that over-values youth, strength, and beauty has something to learn from people who are weak. If there is a suffering that flows from having Down Syndrome or a similar disability, it has to do with inadequate support, lack of inclusion, or the devaluation of people who are
physically or intellectually dependent on others. Research like this does nothing to alleviate these problems.

One of the folk wisdom expressions I learned at Contrarian's knee is this one: "If all you have is a hammer, everything looks like a nail." I would paraphrase it thusly: "If what you have is medical training, everything looks like a disease." This whole debate about a "cure" for Down Syndrome is analogous to the much more widespread question of pre-natal testing and abortion. In most developed nations, the abortion rate for fetuses with Down Syndrome is around 90%. Since people with
congenital disabilities are not generally born to like parents (In terms of marginalized groups and politics within the family, people with disabilities have a lot in common here with people who are homosexual.), parents in this situation are extremely dependent on their doctor's advice. But there is nothing in the doctor's medical training that puts them in contact with a non-disease-oriented understanding of disability. This dramatic eugenic shift is taking place in our society right now, and neither people with Down Syndrome, nor the people close to them have any voice in it.

One final point I would like to make is this. When we get into a debate about the eugenics of prenatal testing, or a "cure" for intellectual disability, the rebuttal arguments (as I've demonstrated) usually focus on what people with disabilities have to offer our society. "Don't change them! Don't get rid of them!" we trumpet. "WE need them!!" I would just like to point out that there is no other group in our society that needs to demonstrate their worth to other people in order to secure their right to exist unmolested. If life with Down Syndrome was really filled with intrinsic, unbearable suffering, people with Down Syndrome would be dropping from our skyscrapers and bridges like flies. If you really want to know the worth of a life lived with Down Syndrome, ask someone who has it.

Friday, July 24, 2009

I do!

“To love is to reveal to another person that they are beautiful.” We hear Jean Vanier speak these words often as he proclaims the message that L’Arche has to offer the world, and we live these words in small, simple ways in our homes and programs every day. But is rare that we have the opportunity to celebrate them in recognizable, public ways. On July 18th, 2009, when we gathered to celebrate Angus and Heather’s wedding, that is just what we did.

As I stood among the 300 plus people at the church in Inverness, I was struck by what some have called the “layers of significance” I was witnessing. I was aware of how many other people with intellectual disabilities have been told that their dream of love is unattainable, who for many reasons cannot fully express the love that lives inside them. I felt the importance and meaning of the sacrament of marriage, and the injustice done to so many who are denied participation in this institution. And, most importantly, I was aware of the significance of this moment in my friend Angus’ life. Angus, a gentle man of few words, has been a member of our community since its founding. And he has always been very aware of his place in the social order. When Angus first arrived at L’Arche, he wanted to know why he did not have a nickname, a common practice for virtually all other men his age in Inverness County. So, when he helped peel the logs for the Gunns’ cabin, he became “Angus Peeler”. This nickname was, and remains, a source of pride for Angus, a recognition of his value, of the fact that he belongs.

After the wedding ceremony and reception, Angus and Heather approached the microphone at the front of the hall to say their thank yous. Angus, in his trademark whispering voice, thanked people for coming and for making it such a beautiful wedding. Then he glanced toward Heather and said, “Now the wife is going to say a few words.” Or course, there were gales of laughter, and we have recalled that moment several times since with a smile. It only took about two hours for Heather to become “the wife”! But I think there are layers of significance to this comment as well. Angus knows what it means to be married, to be a husband. Not only in terms of loving and taking care of each other, but also in terms of how husbands and wives relate to each other, and how they relate to the community around them. I think Angus was waiting his whole life to take on the role of “the husband”, which is why he so easily refers to his beloved as “the wife”.

After the wedding, Angus said it had been the best day of his life. Marriage may not be the answer to everyone’s deepest desire, but it certainly seems to have filled a void for Angus and for Heather. I feel so privileged to be a part of their journey, and a part of the journeys of so many others who are seeking love and fulfillment. Whether it be their own apartment, a new job, to be celebrated on their birthday, to have their photo framed on the wall, to have a best friend - I give thanks for being a part of a community that, every day, seeks to reveal the beauty in each person, and in so doing helps me see the beauty in myself.

Monday, June 1, 2009

I AM...

Last night we hosted "Springfest", a dinner theatre to raise money for L'Arche Cape Breton. Original entertainment - song, dance, and theatre - was created and presented by members of L'Arche and was meant to share a bit of who we are with the world around us. We shared about love, grief, laughter, and celebration, about relationships that transform and about the value of every person.

At the end of the evening we presented a video featuring six of our people sharing about themselves. I think that those seven minutes were a profound experience of insight and transformation for many of the 200+ people at the Judique Hall last night. Watch the video at the link below, and I think you will understand the comment that one of the guests made to me last night. He was a 65+ year old man, born and raised in Inverness County, likely not someone who "emotes" very well or very often. But after the video he spoke to me with an obvious lump in his throat and said, "The people in that video, they were telling the truth." Well said.

Now click here and watch the video.

Monday, May 25, 2009

The Year of Magical Thinking

Today marks the first anniversary of Angela's death. I found this piece that I wrote about her back in 2002:

At a Community Night a year or so ago, we managed to get a hold of a karaoke machine. We could play any song we wanted on this giant stereo, either on tape or CD, and it would play the instrumental part of the song, but mute the vocals. We plugged a professional looking microphone in to the back of the machine and sang the vocals ourselves. It was a great evening, and we discovered hidden talents in many of our community members!

But none so astounding as Angela. Angela had arrived in the community a couple of years before, having lived a part f her life in a very difficult situation with her mom, and the past few years in a residential facility in another area of Nova Scotia. She came shy, timid, and reluctant to talk to anyone she hadn’t lived with for a while. She seemed unable to call anyone by name, that being too substantial an expression of connection, even intimacy, with another person. She rarely answered questions spontaneously, but rather waited to be given clues as to the desired answer. Only then would she take the risk of offering her view, even on something as simple as to whether or not she was having a good day. Few people had heard Angela speak more that a few simple words, although we all knew that she understood everything we said, and that she was very capable of using language to the full.

Angela also seemed very self-conscious of her big, clunky, motorized wheelchair, which she depended on so heavily for her independence. Without it, she couldn’t move more than a finger, yet she seemed almost resentful of its presence in her life. It both offered her incredible freedom, but also served to inhibit her even more.

And, so, on that night in the Lodge with the karaoke machine, everyone’s curiosity was piqued as Angela motored up toward the microphone. As assistant in her house cued up a CD, and Angela tentatively cleared her throat in preparation. From the stereo speakers came the swell of the orchestra, and right on cue, Angela opened her mouth and began to sing. And not just “Twinkle, Twinkle, Little Star”, either. No, Angela’s debut was to the powerful Celine Dion masterpiece “My Heart Will Go On”, from the soundtrack of the movie “Titanic”. As her voice got louder and she reached to hit the high notes with style and class, jaws were dropping open all over Lodge. This woman could sing! By the time her voice faded on the ending notes of the song, there wasn’t a dry eye in the place. We had all witnessed Angela’s moment of transformation, and it seemed that we were transformed as well.

Wednesday, June 25, 2008

The Big 4-0!

Last night, Dennis turned 40, ("the big 4-0", he proudly announced to everyone he happened upon) and celebrated his 15th anniversary as a member of L'Arche Cape Breton. Faithful to his loves, the day was built around food and people. 22 of us went out to the local greasy spoon, where Dennis' excitement level nearly prevented him from finishing his meal, he was just so full of chatter and questions. Then back to the Lodge where dozens of people waited to wish him well and celebrate with him. We watched a movie that Silas had made for him, full of music and good wishes from friends and old pictures of Dennis. Next, Maria arrived with two authentic German black forest cakes and the day was complete.

All day, Dennis was so happy, so thrilled with the plans and the menu and the possibility of cards and presents. It was good to see him full of smiles and laughter and glee. But what was even nicer was to see how touched, how emotionally moved, he was by the movie and the nice words and love of so many people that filled that film. That softer, gentler side of Dennis is one we rarely see, but it is so much a part of who he is.

Everyone deserves to be celebrated. When we make the time to give thanks for each person, we often see parts of them we would otherwise miss. We can get to know people in new ways - their beauty is revealed to us. For people with disabilities, who are so seldom celebrated, these times of gratitude and celebration are essential, not just for them but for the world that is so in need of their contribution.

Thursday, June 19, 2008

Michael Hector Steele, August 2, 1962 - June 16, 2008

You remember 2008?......June?......16th ?......

That is a date I remember, a date I will mark on my calendar, commit to memory, recall often, and remind others of. That is the date that I sat with a great man as he made the passage from this world into the loving embrace of a merciful God. That is the date that friends and family, drawn together by the love of a simple man, sang songs and said prayers and drank a toast (dark rum in medicine cups) to a true peacemaker.

You know Cleveland?......You know Charlotte and Roddie Steele?......You know their son, Michael?......Well if you did, consider yourself blessed.

Michael Hector Steele was a man whose life was full of riches. Some of his riches were because he could never seem to “find” his wallet when it was time to pay the bill, some because he was light on his feet, could move quickly when he needed to, and couldn’t resist the temptation of money just sitting there, unattended, and nobody looking. But mostly Michael’s life was full of the riches of family.

As is the mystery of so many things in life, this richness began with suffering, when Michael lost his mom when he was just a little boy. But that early loss enabled Michael to belong to two families – the Steele’s and the MacDonald’s. And so Michael was doubly blessed.

Gerri and Floyd’s courage in welcoming this little boy in the first months of their marriage was a leap of faith that yielded rich rewards. Mike was raised in love, by a family who treated him as he deserved to be treated – just like everyone else. They loved him and irritated him, they teased him and forgave him and tried to hurry him up. They believed in him and they taught him to believe in himself. They gave him one of the most important gifts that a person with a disability can be given – a strong sense of self and a confidence in his own worth as a human being. Michael knew he was worth something, and he expected to be treated with dignity and respect. And so he was. He was a son and a grandson, a big brother, an uncle, a groomsman, a brother-in-law. (He never got to be a dad, although according to Judy, if she had her way, he would have!) Many people have commented on how lucky Michael was to have had such a wonderful family. Although this is certainly true, it was Susan who said that those folks had everything backwards – they felt lucky to have Michael.

Michael’s family loved him well, and he loved them back just as fiercely. To see that famous grin threaten to split his face right in two when one of his brothers would burst into the room and make some boisterous remark about “Steely Dan” would do your heart good. He loved to tell stories of his family, and although the stories were often excruciatingly long, it was a joy to sit and listen and watch his face as he recalled his family in Cleveland and Creignish. Truly, when he told stories of his family, Michael was telling the story of his heart.

Over these past weeks, many of us have been so moved by Gerri – her strength and strong will, her refusal to take no for an answer. When Gerri came to Korban House, Michael sat up and took notice. If Gerri said he had to eat something, he ate. During his first stay at the Baddeck Hospital, we could barely get Michael to sit up in bed. But when Gerri came, he was walking up and down the hospital corridors. I saw the same dynamic at work yesterday, as Gerri traveled from Steele to MacDonald, sticking nametags on lapels of reluctant family members so everyone would know who was who during the wake. “Resistance is futile”, one of the kids commented. And yet for as long as I have known her, this powerful woman, this “force to be reckoned with”, cannot speak of her son Michael without the tears coming. As she begins to talk about her gratitude for Michael’s presence in her family, for the way he helped to teach her kids to be good people, people of compassion and sensitivity and welcome; as she asserts with absolute certainty that welcoming Michael was the best thing she ever did, her emotion wells up and spills over and she seems so fragile. This is the power of Michael Hector Steele.

But even after a rich and full life in Creignish, loved and cherished and cared for, Michael’s arrival at L’Arche was a new life for him. He was so proud to do what his beloved brothers and sisters had done before him – move away from home, get his own place, land a “real” job with a weekly paycheque, a social life independent of his relatives. That same sense of generosity that made it possible for Gerri and Floyd to welcome Michael as a boy now enabled them to share their treasure with us. And uncovering that treasure over the past eight years has been a blessing and a privilege for all of us at L’Arche Cape Breton.

There is popular saying that I have seen on greeting cards, wall plaques, and fridge magnets - Live well, laugh often, love much. Typically this sort of pop culture wisdom rubs me the wrong way. But as I have had occasion to reflect on the life and times of Michael Hector Steele over the past few days, I am struck by how fitting this little phrase seems to be.

Michael lived well. He knew to appreciate the gift of each moment – a good cup of tea, a piece of F-U-D-G-E, a visit on the couch with a friend. He took his time. (Although it think it was Graham who mentioned that the folks who thought he always moved at a snail’s pace never watched him as someone across the room was pouring a drink of rum and coke ) Many people have talked of how much Michael loved to dance, and how much they loved to watch him dance. He did the steps and the square sets his own way – slowly and a little lopsided – but with total freedom and without a shred of self-consciousness. Quite the opposite, in fact. He claimed his place in the middle of the floor, right in front of the stage, whenever the fiddlers gave the nod for the really good dancers to show their stuff.

Michael laughed often. He laughed at his brothers when they teased him about being lazy or cranky or any number of sins. He laughed when his friends made jokes about things he considered scandalous. He laughed at his own jokes. Like the time he persistently beckoned one of the assistants at Asha House to “come here”. He wouldn’t stop until Joe was merely inches away from Michael’s nose, at which point he grinned and said “Shut up!”

And Michael loved much. He filled up with emotion when a friend would give him a kiss, or grab him in a waltz and dance across the floor. He relished the opportunity to take one of his many lady friends out for a meal or a drink. And once he let you into his heart, he never let you out.

Many people have been touched by the way Michael was loved during his last days at Shalom. Someone wrote us a note saying that “L'Arche has a role in teaching the world how to live the passage of dying with grace and compassion.” I believe this is true. But I think that the reason we are able to live this passage well is because we are open to the example of the “unlikely teachers” in our midst, people like Michael Steele. Our people live with vulnerability and weakness, a fact which these last months of Michael’s life illustrated so clearly. And even though our world teaches that this weakness and fragility is to be avoided, we know in L’Arche that we are called to walk with people on these difficult roads, to accompany them in suffering as well as celebration. And we believe that in this suffering there is somehow the mystery of Jesus’ presence among us.

Until recently, the closest any of us got to helping Mike with any personal care was knocking on the bathroom door begging him to hurry up! But over the past few months all that changed and Michael needed us to care for him in very obvious, physical ways. He needed us to help him eat, to move him, to bandage his feet, to help him get washed and dressed. These were difficult times for Michael and for us. And as I looked at his little body lying there in his bed in our house of prayer, I kept picturing the body of the crucified Christ, so tiny and vulnerable, so broken. I imagined Jesus friends standing at the foot of the cross, witnesses to suffering, crying out in disbelief and despair, as we did, seeking some explanation for why their dear friend had to suffer, and had to leave them so soon. Just as the passion and death of Christ remained a mystery to the disciples until Jesus was revealed to them in the resurrection, so Michael’s suffering and death is still a mystery to us.

There are so many stories about Michael – too many to tell today. There are stories about Michael as a toddler, running into the side of the house as he watched with delight his shirttails flapping in the wind; about finding a stash of dried up banana peels behind his bed; about threats of having to walk to Bingo if he wasn’t ready on time; about too much "Murder She Wrote" leading Michael to create all sorts of sordid mystery stories of his own; about broken arms and missing fingers endured without complaint; about frosted cinnamon rolls snuck into pockets and eaten in the privacy of the bathroom; about "Steeles not drinking beer"; about Michael making the arduous trek to the top of the waterslide at the Delta Hotel pool, ceremoniously making the sign of the cross, then screaming like a girl the whole way down.

But the story that remains with me today is the one of Michael in a L’Arche summer vacation group going on a whale-watching tour in Pleasant Bay. The day was windy and the whitecaps on the dark green ocean looked ominous. But with some convincing, Michael reluctantly agreed to join his friends on the boat. As the vessel ventured out over the rolling waves, Michael’s face got greener and greener, and his knuckles whitened as they gripped the side of the boat. As Gillian, trying to lighten the moment, leaned in close and said, "Are you ready for a rum and coke yet?", Michael looked at her scornfully and said, as only he could, "What do you think?" When the boat finally came safely ashore and Michael’s feet were once again on solid ground, he was jubilant. He raised both arms high in the air and shouted "Amen! Amen!"

What a metaphor for the last months of this man we loved so much. Michael has been on rough seas, anxious and worried and often in pain. But now I can picture him at the pearly gates, sitting with Charlotte and Roddie and Floyd, surrounded by half moons with the fiddle tunes dancing in the air, a jillick clutched in his hand, and his arms raised high in triumph shouting, "Amen! Amen!"

So long, dear Michael. It’s been good to know you.