"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.

Research adjustment

Being a "research student" is something of an adjustment. On the whole, I enjoy it a lot, though there's something comforting and familiar about classwork.

I am responsible to myself. I have to keep myself organised and motivated. On days when I don't feel like doing much, I still need to push myself. I also have to direct myself as to what to do. Do I look at this? Read that? What's most important? It's interesting, to be sure. Last week was a little slack and confusing, but I have a game plan for next week, which will help.

I like the general lack of pressure.

It's strange, having advisors. When I worked with David, I knew him well enough that I was comfortable just asking random questions and learning from him. I still am, and I still do. It's weird trying to form that sort of relationship now by necessity. Yes, I can ask questions when I feel in a jam, that's what they're there for.

I've got a lot I can learn from them about how to do research for this sort of massive project, where you have to be able to account for just about everything and anything marginally related. You might not write about it, but you have to know about it, in case someone asks.

Oh, and I'm not the only one to want to throw Piers Plowman against the wall in a bewildered rage. I'm comforted to know that.

Dear You (pl.)

Please, please let me do my thing. I'm finding stuff that really excites me, and it's exactly what I'd hoped for. I feel like I've been give a jigsaw puzzle without a picture on the box. When all the pieces got dumped out, some were face down. I'm starting to get some turned face up, so I can at least start looking for pieces to go together! Don't make me read any more tales, I'll get to them if they're relevant, I promise.

Just let me keep turning pieces over.

My background in religion is merging with my time working with Excellent David and his insights, and even that horrible philosophy class from last year. My codicology and my social history classes have added to me. And my palaeography time with Excellent David leaves me able to puzzle out a good portion of script. I'm so ready to just jump in, please let me.

Sincerely (really!),

Your supervisee

Why

Voices of Self-Determination. Why am I so passionate about disability issues and disability history? Go find out.

السلام عليكم

As-Salāmu `Alaykum, Alia.

Alia Qureshi died 19 December, 2007. Alia and I lived together at the l'Arche Daybreak "Green House" in 2003. I remember my time at the Green House with mixed feelings. On one hand, it was a joy to be at l'Arche and among people I loved. At the same time, it was hard being separated from people I loved, and un-l'Arche-like politics clouded the time.

Through the months I was there, I remember getting to know Alia. I remember arriving in the house and feeling quite intimidated by this tiny woman in her wheelchair. I wondered how we'd relate to each other, how we would communicate. Others seemed to enjoy a bond with her that transcended the words she couldn't speak. I was scared.

Then I got to know her a bit better. I enjoyed the time we spent together in the mornings and evenings, and bath time, which was really more like spa time. We would listen to music together; she had a tape deck and a number of Muslim music tapes. Sometimes we would listen to "A is for Allah," and I would learn about the Arabic alphabet. More often, we would listen to Dawud Wharnsby-Ali's tape, The Road to Madinah.*

Gradually, as we spent more and more time together, I remember feeling overwhelmed. At one point, I was the only person in the house doing routines with her on a regular basis, I had injured myself, and the general mood in the house was tense (for many other reasons). Meals could take upwards of three hours, and Alia would still be feeling sick through them. Looking back now, I wish I had been able to joy in the time better, but then I was exhausted. I wish I had known her better.

I remember her as a dancer, primarily. The sickness was a disguise. It shadowed her, and when she danced, her real self was allowed to shine. When she danced, her wheelchair was transformed from a necessary encumbrance to a vehicle for her art and her spirit. Many nights when she was well, would would dance in the dining room together, wheeling her in loops and circles in time to the music she loved so much. She would throw back her head and laugh: a deep, whole-body laugh that made you laugh as well for the sheer joy of it, of life and living.

I remember doing so much to try to coax her to laugh. Until this very minute, I was wondering if our relationship had ever been very deep, but remembering her laugh, and all the times I made noises for her to giggle at or danced with her, I realise how much her laugh meant to me. It was infectious, and a delight when it was heard.

Ali-Liu Qureshi. Daybreak core member, daughter, sister, friend. Loved by her family and the many people who lived with her, danced with her, or simply saw her dance.

I compare my time with Alia to my time at Oaklands. At Oaklands, bathing is often done as quickly as possible. There are too few staff for too many residents, and it's a good day when we have time for bubble baths. With Alia, it was simply the way things were. It was important to spend the time together, to relax. It was not a matter of business, it was facilitating a bath that was as much as possible the bath I would wish to be given. It's an interesting thing, and a good thing, for me to remember.

I don't know if other people have trouble thinking of acknowledgements or thank-yous, when it comes time to affix them to a dissertation. I know mine will be a simple matter. To Alia, and Keith, and Jane, Mike, Carol, Francis, Peter, Whitney... to all of you, living or departed. Thank you for opening my eyes and teaching me to love.

Carl MacMillan, the community leader, wrote a wonderful tribute to Alia on the Daybreak website, and I recommend reading it.

As-Salāmu `Alaykum, Alia.

Farewell

Yesterday morning at approximately 1030hr, Keith passed away.

Keith was one of the residents at the centre where I work. I knew him when he was in House 6, so I think I got to know him a little better in some ways than the folks in House 7 did, since his routine changed dramatically when he moved.

He was noisy and kind of gross. Some days, very gross. He wasn't very personable and didn't interact that much.

For some reason, I still liked him. I've no idea why I had the soft spot for him, but I did. I'm going to miss him.

Rest well, little guy.

Foreboding...

A SSHRC plan of study is two pages long. Two tiny pages.

Yet here I am, just staring at them. I'm so sick of them I never want to see them again. I want to throw them away, delete them, burn them, and enter the world of low-paying mindless drudge work.

On second thought, I don't. I have heard so many people say "I got started at Oaklands to pay a few bills, figured I'd be here a few months or a year, tops. That was 17 (5, 22, 30!) years ago." I don't want to ever hear myself say that. I'm motivated!

I have seen the poop-eaters, each to each. I do not think that they will sing to me.

I have to finish this app!