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.