Choose Joy

One of the core values of L'Arche is "Live in Joy".   This comes naturally to us in L’Arche – we are people of celebration, of music and birthday parties and rejoicing in the small moments of everyday life.  But we are also people of suffering, of rejection and institutionalization and unfulfilled dreams.  What I am learning more and more is that being joyful – really choosing joy – can happen even in the midst of this pain and loss.

Like all lessons, I have to learn them over and over.  My most recent teacher in the lesson of choosing joy is Jannette.

Jannette is a woman in her early fifties, who lives alone in a small, one bedroom apartment on the west side of Saint John, NB.  She has a welcoming smile and a witty response to just about every situation, and has been a faithful member of L’Arche Saint John since its founding as the New Dawn community more than 20 years ago.  She can always be counted on to come to prayer, community night, and just about any other event L’Arche Saint John hosts.  Last spring, despite her limited income, Jannette made the trip to Halifax to join the Altantic Region for our Draw the Circle Wide event.  On my last visit to Saint John, Jannette invited me over to her place for tea.

Her apartment is small, and it is full – full of collections of angels, spoons, dolls, and other knickknacks.  (On the top of her kitchen cabinets, among other treasures, there is a bronzed piggy bank bust of John F. Kennedy!)  Jannette keeps all her collections meticulously clean, and can proudly share the story behind each and every piece.

During my visit, Jannette also openly shared with me some of her own life story.  If you are looking for a story of grief, you need look no further.  Jannette grew up in foster care, in a home where more than 1000 children came and went over her childhood years.  She never met her birth father, and lost a brother to suicide.  As an adult, she had a deep desire to connect with her birth sister, and although she did find her, living in an institution in the Maritimes, her sister died before they could meet.  Jannette told me all this, and more, over tea.  When I expressed surprise that she shared so freely, Jannette said that telling her story is like her therapy – a way for her to cope with the struggles she has lived, and to learn from them.

As I got ready to leave, Jannette brought me a piece of paper and a pen, and asked me to write a prayer, along with my name, and drop it in her “prayer jar”.  She explained that she asks all her guests to do that.  Then, on evenings when she is eating alone at her tiny kitchen table, she takes a prayer from the jar, reads it, and prays for the person who wrote it, and their intention.  That person is her companion for her solitary meal.

As we live this daily life in L'Arche, is there a better teacher than Jannette?  As she opens herself to others, and chooses to live in gratitude and joy, she invites me, and all of us, to do the same.

For the Love of A Good Woman

Twenty one years ago, I arrived at L'Arche Cape Breton on the East Coast of Canada.  I was 22 and I had lots of experience with people with disabilities.  I had been living on my own and fancied myself a pretty good cook.  I had a university degree in psychology and plenty of confidence in my own abilities.

I was welcomed to Asha House by the incredible Cariosa Kilcommons, and many other lovely people who were delighted by my arrival and who did all they could to make me feel welcomed and at home.

And then there was Mary.

I was terrified of Mary, and with good reason.  Born deaf and with Down syndrome, Mary was the youngest of 13 children.  When both her parents died suddenly within a span of just a few months, Mary's older siblings all went to live with aunts and uncles around the province.  But Mary was sent to live in a local institution for people with disabilities.  She was three years old.  She lived in that awful place for 31 years.

With her age and her disabilities, Mary had to find a way to survive institutional life.  And survive she did - with a vengeance.  It was during these years that she earned the nickname Bomber - as in explosions.  The moniker was well-deserved, as I dare say many would have rathered diffuse an actual bomb than face one of Mary's explosions.

Bomber came to L'Arche in the very early days of the community, a time when our founder's philosophy was to never welcome anyone bigger than him.  That way, he figured, he'd always be able to keep things under control.  Let's just say Bomber blew a big hole in that philosophy.

So, there I was, thrilled to be at L'Arche but terrified of Mary.  And so God, in her infinite wisdom, decided that Bomber and I should be roommates.

The American writer Anne Lamotte says that when God is going to do something wonderful, She always starts with a hardship; when God is going to do something amazing, She starts with an impossibility.  My relationship with Bomber was an amazingly beautiful impossibility.

This little woman - who couldn't read or write, had never gone to school, had no family experience to speak of, and who would certainly never be a mother - this little woman raised me.  She raised me from a cocky, naive kid who thought she knew everything into a slightly less cocky, slightly less naive woman who is quite certain I don't know anything.  I could write a book about the lessons I learned from Bomber, but in the interest of brevity I'll stick to just a few highlights.

St. Augustine says that only three things are needed to be saved - humility, humility, and humility.  If this is the case, then I can thank Mary for my salvation.  Bomber taught me to be humble.  If she could speak, she most certainly would have said (over and over) "You're not the boss of me!"  And I wasn't.  Bomber sat where she wanted, wore what she wanted, ate what she wanted, and went where she wanted.  And she did it all at her own pace (which was excruciatingly slow!).  She forced me to let go of my need to be in control, and to accept my own powerlessness.

Bomber also taught me to stand my ground.  She showed me that even someone with a story like hers - a story of loss and and weakness and abuse and abandonment - even someone with her story can take a stand, and people will listen.  In our province, the government decides who can and cannot live at L'Arche.  When people get older and their needs change, they can be moved, against their will and the will of their family and the community - to nursing homes.  Bomber was old and sick, and the powers that be decided she would be better off in a nursing home.  But she had already spent too many years in what David Hingsburger would call "the land of the long corridor", and she wasn't going back.  And so, on the day that her file was to be officially approved for nursing home care, Bomber died.  She died at home, in her own bed, surrounded by tearful friends.  Even the government wasn't the boss of her.

But most of all, and perhaps unexpectedly, Bomber taught me about tenderness.  About how to forgive someone seventy times seven times, about the need to show mercy to myself and to others.  Through all the conflicts, the tears, and the wounds (and they were not just figurative wounds), Bomber was always the one who came back to say "I'm sorry".  She always reminded me, signing with her arthritic little fingers, "You and me are friends".

And we were.

But that's not the end of my story.  In my twenty one years at L'Arche, so much has changed.  I don't live in a L'Arche house anymore.  My roommate isn't Bomber anymore - it's my husband.  And we have four very noisy and very demanding kids.  A lot of the people who were my teachers in L'Arche have passed away.  And lot of my friends who are still around aren't too interested in coming to spend time with me, on account of those noisy, demanding kids!  And if I am truthful, over the past couple of years things haven't always been easy in my community, and that tenderness that Bomber taught me has hardened a little into a heart of stone.

I can't rely on my twenty year old story of transformation.

And then along came Barbie.

Barbie arrived in the community in June from a loving and supportive family.  Barbie loves chaos.  She loves dance music in the living room, unexpected things ("Surprise, surprise!" she often exclaims), iPads, and things that make noise when you press a button.  In other words, Barbie loves my house!

And Barbie's excited "Yes!" when I invite her over for supper, the way she runs from her house to my van when I come to pick her up, a goofy smile on her face, the way she is adding "Jenn" to her small arsenal of names - in all these ways Barbie is healing me.  She is replacing my heart of stone with a heart of flesh.

The 14th century mystic Julian of Norwich has been the source of much consolation for me over the years.  I will finish with words of hers that I think sum up what I have learned - and still need to learn - through my relationships in L'Arche.

"And thus will I love.  And thus do I love.  And thus I am safe."

The Word Made Flesh

At our weekly community worship, we frequently listen to scripture  - and talk about it, and sing about it, and act it out! – to discern what the word of God is saying to us today.  But what we discover in community is that it is just as important for us to be the word of God for one another.  At this week’s worship, I had a chance to share some of the moments in my story where God spoke to me through my brothers and sisters in L’Arche…

Last winter I was visiting at McKim House at L’Arche Saint John.  A new Starbucks had opened not too far from the house, and, being a Starbucks Gold card holder, I was more than a little excited.  With a few minutes free, I thought I’d take a trip out for a venti Caramel Macchiato.  “Okay guys”, I announced to the folks in the living room, “just tell me what you want – it’s my treat!!”  Debbie had been sitting quietly in her regular spot, an armchair in the corner, knitting.  Upon hearing of my generous offer she looked up at me and smiled.  “I’ll just have a hug,” she announced.

In May of this year, I was invited by the community of L’Arche Lethbridge to lead their annual Community Retreat.  The talks I prepared for the event drew heavily on stories of some of the most profound lessons I have learned in L’Arche, and my most important teachers.  Many of these wise folks – Mary, Janet, Angela – have passed away.  So by the time we got to the footwashing service of the retreat, I was feeling quite tender and vulnerable, thinking of my old friends, and wondering if my words had done them justice.  I sat in the circle, watching this sacred ritual of care and service, listening to the Taize chants in the background, and as much as I tried to keep them in, the tears snuck out the corners of my eyes.  As I was struggling to keep my emotions discreet, Dana got up from her chair across the circle and walked slowly towards me.  She took the chair next to me, leaned in close and said, “I want you to know that the things you said this week really touched my heart."

To be a long term member of L’Arche is to say a lot of goodbyes.  It is a necessary and painful part of our mission – to open ourselves over and over again to relationships of authenticity, transformation, and honesty.  Even after 20 years, I still struggle with anger and sadness when someone I have come to love makes the decision to leave.  Jamie was one of those people.  Jamie came to L’Arche to learn some skills so that he might be able to achieve his dream of living in his own place someday.  But community came so naturally to him – he thrived in our midst, and he helped us to thrive, too.  So after two years of sharing life with Jamie, when the news came that there was a supported apartment available for Jamie, and that he wanted to move, I was devastated.  Just before his departure date, we gathered in the Chapel for our traditional prayer of blessing for someone who is moving on.  Jamie had a chance to share a little about where he was moving, his new job, and his hopes for the future.  As he finished he acknowledged that he was sad to leave us, and that he knew we were sad, too.  “But I know that you are happy for me, because that’s what friends do.  They are happy when good things happen to people they love."

The word of God that we hear through scripture nourishes and sustains us.  But it has been my experience that, in L’Arche, this word becomes flesh and comes alive through our relationships, and through the wise teachers that are in our midst.

The Right to Choose

Last week the Harper government decided to pull the plug on a long-standing contract with an Ottawa based program for adults with intellectual disabilities.  The folks did mainly shredding work and were paid an average annual stipend of $2000, just enough to keep them under the limit of an allowable income without jeopardizing their Ontario Disability Support Program payments.  I heard about the closure via Facebook and Twitter, both on the feeds of L’Arche friends and those of the Canadian Association for Community Living.  The following two samples of what was posted represent the two key reactions that I witnessed:

This is an absolutely horrible decision by our Canadian government. Please contact your MP and inform her/him and ask that this decision be reversed.

Good to see a sheltered workshop closed.  We need employment - real jobs for real pay.

Then yesterday, Andre Picard wrote an opinion piece for the Globe and Mail entitled You Don’t Help Disabled Workers by Hiding Them.  Picard argues that workplaces like the one operated by the Ottawa-Carleton Association for Persons with Developmental Disabilities (OCAPD) are “outdated and counterproductive, a concept that the federal government should be working to eliminate, not perpetuate.”  He points to the injustice of people with disabilities being forced to work for less than 10% of the minimum wage, and the fact that there are almost 800,000 people with disabilities in Canada who are able to work but cannot find employment.

Picard also says that “instead of sheltered workshops that isolate people from mainstream society, workers with disabilities should be provided with supports for employment that help them integrate”.

I share Picard’s outrage at the systemic discrimination against people with intellectual disabilities, and the devaluing of their contributions to society.  But I felt similar outrage upon hearing of the government’s cancelling of the contract with the OCAPD and the injustice foisted upon the employees at that Centre as a result.  It strikes me that, when it comes to work for people with intellectual disabilities, a more nuanced argument is called for.

First of all, I bristle at the use of the term “sheltered workshop” to describe all the group settings where people with intellectual disabilities spend their work days.  In my experience at L’Arche, workplaces are anything but sheltered.  They are vibrant, challenging, creative places where a diverse group of people come and go and offer their skills.  These programs are integrated into their neighbourhoods, and provide meaningful places of connection not only for people with intellectual disabilities but for local artists, seniors, young people, and friends.  These workplaces mitigate the very real isolation that people often live in their homes, which tend to be the more dangerous “sheltered” locations.  Folks without access to public transportation, living in rural areas, who need enhanced medical or behavioural supports, or who thrive in and choose communal settings should not be condemned for working in group settings.  The workplaces that are sheltered – closed to society, treating people with intellectual disabilities as children, limiting choice and control, and failing to be creative in drawing out people’s passions and skills – these are indeed “outdated and counterproductive” and should go the way of the dinosaur.

I am also uncomfortable with the implication that any program involving a group of people with disabilities is by definition a problem.  Is there a reason why we encourage young people to gather in youth groups or centres, artists or musicians to gather in creative spaces, seniors to have clubs or tours, but we are so uncomfortable with people with disabilities choosing to work together?  Disability is nothing to be ashamed of – it a naturally occurring part of human diversity, and many people with intellectual disabilities share common interests and experiences and therefore want to be together.  The fact that we are so threatened by this says more about our own prejudices, I think, than about the rights of people with disabilities.

In my experience, many people with intellectual disabilities have a heart and a passion for art in all its forms.  For evidence, look to the L’Arche International online art exhibit launched in 2014, or Hearts and Hands at L’Arche Antigonish, the work of Joan MacDonald or Gordon Mills or Lisa Leuschner or Heather Pinneo or other folks too numerous to mention.  If making minimum wage is the only way to judge the value of someone’s work, artists are in trouble.  How many artists earn minimum wage?  And how many of them would jump at the chance to have their basic needs met by the social safety net in order to make their art possible?  How many of them would be thrilled to have the opportunity to work in an art collective with a diverse group of artists and a community that welcomed what they create?

People with intellectual disabilities should have a diverse range of employment options to choose from.  And whatever those options are, they should be well-funded, fulfilling, and integrated into society.  Supported employment only works when it is supported; workshops don’t help people at all when they are sheltered.  I join Andre Picard and others in calling for fair compensation for the contributions of people with intellectual disabilities, as long as that funding honours the diversity and the choices of the people it is meant to support.

The World this Week

What a week.

On Monday, I discovered “Bigger Dreams, Inc.”, a non-profit group in Florida who plan to purchase a recently closed state prison, once home to almost 500 prisoners, and convert it into housing for people with intellectual disabilities.  Segregation, isolation, incarceration – is this to remain the destiny of people with intellectual disabilities?  Have we learned nothing from a century of institutionalization?  From Huronia?  From Willowbrook – the “last great disgrace”?  Those who cannot remember the past are doomed to repeat it.  Please, let us remember.

On Tuesday, Irish Catholic Bishop Kevin Doran, in a train wreck of an interview on a breakfast radio program, argued that homosexuality was not something God intended.  It would be ludicrous to suggest otherwise, he claimed, as ludicrous as suggesting that Down syndrome was something God intended.  And everyone knows that there’s no way God would ever create a child with Downs, right?  That’s obvious.

By Thursday, the inevitable global outrage at Dolan’s comments had erupted.  Activists and allies of the LGBTQ community, myself included, railed against Dolan’s ignorance, his homophobia, his complete lack of understanding of the Gospel message of love.  But the undercurrent of the opposition to the Bishop’s hateful remarks was absolute indignation at his audacity to compare being born gay – a normal part of human diversity – to being cursed with a disability as awful as Down syndrome.  How dare he equate the two?  A journalist for Irish Central wrote that obviously God didn’t intend for “cancer and Downs syndrome and leukemia and insanity and a host of other terrible misfortunes to happen”.  Obviously.

And then, in the midst of it all, Jean Vanier, founder of L’Arche, builder of peace, lover of weakness, was awarded one of the world’s most prestigious honours – the Templeton Prize.  My Facebook page, my Twitter feed, my radio, were filled with “a beautiful recognition of people with disabilities”.  Jean was asking questions like “Where are the schools for love?  Who will teach us to love?  Who will help us to come out from the frontiers that we lock ourselves behind?”  He was describing people with intellectual disabilities as having “taught me more than all those teachers and professors in schools and universities that I have attended.  They have taught me about what it means to be human and about how our societies can be transformed to become more peaceful and unified.”  He was speaking of how people with disabilities had taught him a love that “rises above prejudice and fear of difference”.  And the world was listening.

I’m not sure what the moral of this story is.  But I know this much is true:  undoubtedly, the world is a cruel and hostile place for people with intellectual disabilities.  And undoubtedly, the world can change.

A Sad Reality

Recent CBC investigative reports (which you can find here, here, here, and here) reveal a disturbing reality in Special Care Homes in New Brunswick.  People who depend on these facilities for care (seniors, people with physical and/or intellectual disabilities) are subject to emotional and physical abuse, neglect, improper use of medication, and the worst kind of disrespect, all from the people entrusted to provide their care.

These reports should shock and scandalize New Brunswickers, but sadly should not surprise them.  The world can be a hostile place for the most vulnerable people in our midst, particularly men and women with intellectual disabilities, who so often cannot speak for themselves.

The New Brunswick government needs to address the broken system that allows these types of abuses to happen.  Are your listeners aware that the minimum staffing standards for these for-profit Special Care Homes in New Brunswick are vastly lower than in other Atlantic Provinces?  They may be shocked to find that homes like these can provide care for up to 6 people with just one staff on duty at any given time, and can support up to 14 people with just two caregivers.  In environments like this, is it any doubt that abuses happen? 

L’Arche seeks to support people with intellectual disabilities in an environment that fosters mutual relationships and personal growth.  We affirm the UN Convention on the Rights of Persons with Disabilities.  It is no wonder, then, that our little L’Arche community in Saint John, which provides care for five men and women with disabilities, fundraises over $70,000 per year.  This is necessary to provide a quality of life that is safe, fulfilling, and in keeping with what any of us would want for ourselves or our family members.  It is a shame that the funding provided by the New Brunswick government falls so abysmally short of allowing us to give people the care and the life they deserve.

The government would claim that waiting lists are short for people with disabilities waiting for care in New Brunswick.  Of course they are.  Who would wish their loved one to be subjected to an environment such as the one revealed in these incident reports?  It is time for the province to support organizations like L’Arche, who seek to raise the minimum standard of care for our most vulnerable citizens to a level that New Brunswickers can be proud of.

Possibilities...[reprise]

I’m always searching for the “elevator pitch” to describe L’Arche.  You know, the sentence that captures the essence of who we are and what we do, and can be delivered in the length of time it takes to ride an elevator.  It’s not easy.  Sure, L’Arche is an organization that creates home and work with men and women who have intellectual disabilities.  L’Arche is a worldwide movement that advocates for full citizenship for people traditionally left on the margins of society.  L’Arche is an intentional community that nurtures deep relationships between people of diverse abilities.

But L’Arche is so much more than that.

I’ve lived at L’Arche Cape Breton for almost 20 years.  I arrived upon completion of my university degree to be a live-in assistant (caregiver) for men and women with disabilities.  I came convinced that I had a lot to offer, and that L’Arche would be lucky to have me!  Turns out, I was the lucky one.  The education of the heart that I have received here, the skills I have developed, and the friends I have made, have tied me to this place for two decades, and I expect will keep me here for many more.

I met my husband here, and we’re raising our four kids in this incredible community.  Our children are growing up in a way that few others are.  They have a couple of dozen friends they see each week who each have an intellectual disability.  They know people who use wheelchairs or walkers, people who don’t speak, grownups who need help with things like eating or getting around.  They know that people are different, as they know who in the family is left or right-handed, or whose hair is straight or curly.  Difference is ordinary.

But I remember when my oldest reached the stage when we wanted to talk with her about disability as a particular form of difference.  It’s not an easy concept to communicate to a three year old, especially if what you want to communicate is that disability isn’t a disease.  It isn’t something that makes you less human.  It isn’t a problem to be solved.  My experience with people with disabilities in L’Arche has taught me to think differently, to see the world differently, to laugh more, to forgive easier, to live with compassion, to learn from unexpected teachers. 

We tried our best to explain all this in simple terms and crossed our fingers that at least some of it made it through.  A few minutes later, when we had moved on to other topics, she casually asked, “Can we talk about possibilities again?”  “You mean disabilities?”, her dad asked.  “Yeah, possibilities.”  What a wonderful mix-up in language.

Because of course my toddler’s  “mistake” is really what L’Arche is all about – possibilities.  The possibility that people on the margins of society can change the world.  The possibility that a university graduate and a person who can’t tie their own shoes can form a bond that lasts a lifetime.  The possibility that someone who was in a “special class” in high school can host their own radio show.  The possibility that embracing weakness and vulnerability actually makes us stronger. 

L’Arche has opened me up to a world of possibilities.  And that’s the best elevator pitch I could hope for.

Stand on Humble Ground

It has been about a year since Jamie first arrived at L’Arche Cape Breton.  Sturdily built and well over six feet tall, Jamie is a gentle giant.  He is generous and sincere, eager to know others and also to be known.  He is a community builder.

When Jamie finished high school, he saw his peers moving on with their lives – getting jobs, having girlfriends, moving into their own places.  In Jamie’s words, “I didn’t want to live with my parents forever.  I love them and everything but I want to learn how to be independent.  Every one of my friends is doing it.  I’m probably not going to be just like them but I want to be as close as I can to them.”

In a recent CBC radio interview, Jamie was asked what was the highlight of his starring role in the L’Arche Cape Breton Christmas production of “The Three Kings”.  While he admitted to being excited about acting, having a vocal solo, and being on stage, he noted that what he appreciated most about his theatrical debut was “just doing it together.”  In front of the audience on the day of the show, when talking about his first year at L’Arche, Jamie talked excitedly about meeting “German people, Indian people Kenyan people….but most importantly just a lot of friendly people.”

Jamie’s first L’Arche birthday celebration was “80’s Karaoke” at Corinthian House.  He relaxed on the couch, surrounded by an eclectic group of new friends, while the music played in the background and the words to Eye of The Tiger and other classics were projected on the living room wall.  We all struggled through a few verses of “Everybody Wants to Rule the World”, by Tears for Fears, and then Jamie requested “Who Made Who” by ACDC.  Without moving from the couch, Jamie belted out the most authentic, unrestrained, ear-splitting version of that rock classic that any of us had ever heard!  There was not a trace of self-consciousness, nor any need to be in the spotlight.  There was just a guy singing a song he loved, surrounded by people with whom he felt completely at ease.

After almost 20 years in L’Arche, I still have so much to learn.  And this twenty-something year old, hard-rock loving, Sydney Mines man is one of my teachers.  Jamie knows he doesn’t have all the answers.  He knows he needs help and he accepts it with grace.  He celebrates the good in others and in himself, and in so doing he creates goodness in the community.  Jamie stands on humble ground.

"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.

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 21^st 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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.