29 May, 2008

"The doctors told us you'd never amount to anything, Jane. But look around..."

I have realised some of the reason I am so intent on the specific project I want to do. Not just that it naturally combines all my nerdy interests. Not just that I'm happy to have a clear picture and am reluctant to go back to the drawing board.

Those who've been reading my blog for a while might remember the post I wrote for a friend who recently died, a woman named Alia. l'Arche, for those unfamiliar with it, is a network of intentional communities centred around men and women with developmental disabilities. You don't go to work at l'Arche. You go to live at l'Arche. Not just "live" in the sense of sleeping and eating there - you go to live life in all its complexities, joys, and sorrows. The point of l'Arche is to be a friend, to learn from the disabled core members, to allow yourself to simply be human. It is not a "job" you can leave unchanged.

I was only there at l'Arche Daybreak for two four-month terms, hardly any time at all in l'Arche terms. But those eight months sparked an interest in disability as a concept, a social force, an academic study. Some of the earliest books on disability I read, in the community's library, opened my eyes to the reality that people with intellectual impairments were (are) often treated differently, even prejudicially. I realised that it was (is) common practice (especially in certain protestant denominations) to deny baptism to mentally disabled children and adults.

I read A Place to Hold My Shaky Heart, a small book of mini-biographies of some of the core members in the community. In it was the story of Carol, a woman who I was living with at the time. When Carol was born, she wasn't baptised. She was placed in a large government institution instead. No one bothered to teach her to talk. When she came to Daybreak (in her 40s, I believe), she still could not talk. One of the other core members in her new house taught her to sing "Happy Birthday" (an excellent song for any occasion), and she learned a few other words. Eventually, the people living with Carol decided she should be given the opportunity to be baptised. I honestly do not remember how they discerned the answer, but I can tell you from experience that "non-verbal" people are perfectly capable of expressing themselves, if you know how to listen. Carol was baptised, and she was radiant. She had finally been welcomed into the community that should have been her birthright. She knew that she was no longer on the outside. Now, I've just paraphrased an entire chapter of a book, and if anyone was moved by my clumsy retelling, I highly recommend the whole book.

Mike and Francis are two men I lived with as well. They, and other members of the Daybreak community, are the altar serves and Eucharistic ministers at the community chapel, the Dayspring. Services at the Dayspring are unlike any other. In a world where an autistic child can be barred from his church, people at the Dayspring are welcome to wander, to cry, to wail, to laugh, to dance, and to pray aloud as they see fit. They occupy places of respect and honour.

One final story. During my first term at Daybreak, I lived with a woman named Jane. She was stubborn, loud, opinionated, and she was my sunshine. She drove me nuts, many times, but I still consider her one of my dearest friends. There is not time or space here for me to describe how she changed my life. I remember her 59th birthday, though. In this house, it was customary that the food part of a birthday celebration be followed by an exodus to the living room, where everyone gathered would have a chance to celebrate the birthday person. A memory, a prayer, a story of how a person had been changed, anything was welcome. The room was packed, with people sitting on the arms of the couch, standing in the doorway, sitting on the floor, and after we'd been around the room, it was her father's turn to speak. He told us how when Jane was 4, the doctors had told him she would never amount to anything or be anything, and he would be best off sending her to an institution. Not knowing any better, and trusting the doctors, he did so. "But look around," he said. "Look at all the people whose lives you've touched, Jane. Look how important you've become."

These people made me who I am. Their lives and stories have been the inspiration for my academic ideas. It is their exclusion and marginalisation, followed by their inclusion and centring, that prompted me to ask "What happened in the medieval period? Carol, would you have been baptised, then? Would the Daybreak core members be offered the Eucharist, as they are now?"

This project isn't just academic curiosity, for me. It is answering a deeply personal, and even spiritual question. The story is important.

My dear Daybreak friends, this is just one more small part of your legacy.

1 comment:

Rachel said...

This is beautiful! :) So much in here to which I can relate quite personally. Thank you for sharing....