Friday, April 18, 2014

Panis Angelicus

(originally printed in Mouth Magazine; reprinted in "A little behind: articles for challenge, change and catching up" and published again here with permission of Diverse City Press)

Butter tarts. She was making butter tarts. I leaned up against the counter and watched. Impossibly slow, incredibly precise, she fair burned with purpose. I was expected elsewhere in the building, to have another meeting about something important, I'm sure. But something bad me watch. As realization dawned, her experience became mine. This is what it had all been for, the years of toil and struggle. The captive is freed. And lady liberty moves, slowly filling the pastry shells , one after another. Not a drop was spilled, if it was I didn't notice. All I could see was a graceful ballet of movement.

Butter tarts. Really. Butter tarts. She was making butter tarts. Her hands, the ones that had mixed the batter, were women's hands. I could tell that hers had not been cared for, seldom scented, maybe never even held. Gentleness, she dipped the spoon into the batter with such gentleness. As if she wanted, more than anything, to never cause hurt or harm. Her hands, at least, could promise a peace she may never have known. I had worked once in one of the places that caged people like her for the crime of difference. I smelled the scent of captivity. Her feet still did the institutional shuffle, as if the shackles of that time had disappeared but not fallen away. Time slowed around us as she turned a mundane chore into a hymn to freedom.

Butter tarts. Do you realize the importance of butter tarts? And yes, that she was making them. Sweet batter, unnecessary calories, a smell of luxury, all in a frivolous food. Panis Angelicus. Not on a diet or menu plan anywhere in the world. Butter tarts, two words that freeze the heart of every nutritionist. I remember the pinched faces of those who disapproved or any pleasure or warmth for them. I remember locking doors behind me and going home, leaving them there. I remember being watched through caged mesh as I walked to the car. I remember emotional poverty. But now, butter melts, sugar runs dark with sweet. She was making something rich though her clothes were little more than threadbare. Her manner was of servitude. Her posture of meekness. And yet she was making something rich. The thin souls of those who live to deny, shiver. She was baking a revolutionary food, a declaration of independence from those who know better.

Butter tarts. With raisins. She was making butter tarts with raisins. There were other people in the room with me but none seemed to notice her. Sound swirled around her but but couldn't penetrate her concentration. Her eyes followed every raisin's fall into the delicate pool of sweetness. Twice she stirred the raisins deep into the batter. Hidden treasures, she smiled, in anticipation. I looked at the others in shock. Why couldn't they see the glint in her eyes as the raisins fell and as she slowly filled each small pastry shell. None ran over. They don't need to anymore. Because and only because she was making ...

Butter tarts. With raisins. On a pan full and waiting only for her. This was her job. Not mine. She didn't meed me, my help, my intercession. This was hers. It needed her hands. We were in a kitchen. It had a sink. A fridge. Stove. It was like a thousand kitchens in a thousand homes. Unremarkable really, except maybe to her. She alone may notice what others do not see. She would see the unlocked doors that led only outside. The windows without mesh or bars. It had only people who knew her name and who used it kindly. She was here because she wanted to be. This was a choice. Freely ... unbelievably ... freely made. Her hand showed no tension from rush, or fear, or force. They simply worked at their own speed in creation of the sweet hereafter.

Butter tarts. I want to call down the corridor of time. "Come one. Come all. Quick come see. The village idiot is making butter tarts. The institution's moron is scooping batter and the school's imbecile watches the raisins fall. The denied child -- her touch knows sweet. The refused communicant -- her heart knows bitter." How long, I wondered had her hands been held captive in that place with the long corridor. How long had she waited, and endured, and prayed for today. The day that she would make ...

Butter tarts. With the poetry of motion she was eloquent. She moved in freedom as if its air had the buoyancy of water. In wisdom we had locked her away for the crime of learning slowly. She will again, I know be called a R#tard by those who know better. She will face those who are embarrassed by her presence. She will struggle, every day, against bigotry to live with dignity. But the battle is won. Because now, and all we really have is now, she is sitting on a comfortable chair and waiting.

For butter tarts.

Thursday, April 17, 2014

Three Kisses Plus One

We were seated, at a window, having a cup of tea when I saw them. Two young men, barely past their teens, stopped, just on the other side of the glass. In greeting they hugged and then kissed each other. They walked away holding hands.

A revolutionary kiss.

Revolutionary because it spoke of the pure humanity of those two boys. It was a kiss that expressed their deep love, their absolute affection, their spontaneous expression of joy. I watched them walk away and I felted deeply honoured to have simply been witness to a time that made this possible. Many are horrified at Public Displays of Affection. I am not. I do not feel comfortable with public displays of sexual behaviour. But these days people mistake sex for intimacy and sex for affection. Public Displays of Affection remind us of the transformative power of love.


I was a new staff, taking a group of people to the 519 Church Street Community Centre when they hosted the Friday Night Club, a club by and for people with intellectual disabilities. It was a blast and the people who I was there to support dumped me as soon as they entered the room. I wandered about and finally found a place to sit amongst crowded tables. It was early in the evening and the DJ has just started. One lone couple got up to dance. They both had Down Syndrome. They held on to each other, dancing a slow dance to fast music. Then she put her hand behind his neck and drew his lips to hers. They kissed.

A revolutionary kiss.

Revolutionary but it spoke of the pure humanity of that young couple. It was a kiss that would have been disallowed by almost every policy of every agency of the day. It was a kiss that easily could have lead to punishment, a stern talking to and a forever ban on dancing. But none of the punishment, none of the upset and none of the meetings could ever erase what had happened. A kiss had happened. An expression of love had happened. Two lips touched and our certainty of the place in the world that had been created for people with disabilities was shaken. Public Displays of Affection remind us of the transformative power of love.


I sat and listened. She had made herself a coffee, spilled some milk into it, lit a cigarette and began to tell me a story. It was part of a conversation that had been ongoing for several months. I was the behaviour therapist, she was the mother of a young girl with cerebral palsy and an intellectual disability. The room was one that was full of the evidence that this child had accessible play. She was a good mom, she had a good husband and together with their child they made a strong family. But the story she was telling me was about the moment that she realized that she would have to take a stand regarding her relationship with her child. She had been in a doctors waiting room. Other young mothers were there, their kids crawling all over the place. Her child did not crawl, She sat beside her mother in an adapted stroller. The eyes of the other mothers showed pity, which barely veiled hostile sentiment. They were glad of theirs, thankful they didn't get hers. "I picked her up from her stroller, held her in my arms and I kissed her." It was in that kiss she recognized that her love for her child would have to be seen. It would be seen in her affection but it would also be seen in her advocacy for her child's right to be seen and treated and respected as human. "That kiss told those women exactly what they could do with their pity," she said stubbing out her cigarette.

A revolutionary kiss.


I lay in my hospital bed. Surgery behind me. Uncertainty in front of me. I had just woken from the anesthetic. Joe was there. He leaned over the rail of the bed and kissed me.

A revolutionary kiss.

A kiss that said, now is like then, all is well.


The world is changed when we are changed.

And sometimes it starts with something a simple and as powerful as a kiss.

Wednesday, April 16, 2014

A Big Day

Today is kind of a big day for me.

Many of you know, because I wrote about it here on "Rolling Around in My Head," that I had to cancel my trip to the UK this year because of a health issue that had to be taken care of right away. I started treatment right away and I hope for a quick recovery. What I got was a slow but steady improvement. I had an upcoming two week trip booked, 4days lecture, three days off, 4 days lecture. Well, that was approved by my 'Health Support Team' yesterday, and today, I booked the tickets.

I really enjoy, not the travel, but the opportunity and indeed the honour to share information and to present a 'point of view' regarding service provision to people with intellectual disabilities. That that is now back on the table, I'm relieved and, in a very simple word, happy.

So today I had to make the arrangements for travel, calling the airline, working with them to get the seats booked, deal with accessibility issues and have them do a thing or two that meets my unique needs as a traveller. I have sometimes found this the most arduous part of any trip - other than the travel day itself.

Today, though, I got through to an Air Canada agent, whom I had called because I can't book on line due to some of the things I need to be able to travel. The agent, once I explained to her what I needed, said, "That's not a problem, all that can easily be done, but I'll have to call several departments and it might take a little time." I told her that I had time and over the next hour she came back from hold to ask a question or two, and then, an hour later, it was all done.

Easily done.


This has sometimes taken me the most part of a day! But the agent was helpful, knowledgeable, full of good humour and incredibly reassuring along the way. She apologized for the wait and stayed with me on the phone until the tickets arrived via email.

Air Canada, from me to you, THANKS! For me, as a traveler with a disability, you almost always get it right.

I feel so happy about my health, about the future that I could almost, no I think I will ... fly.

Tuesday, April 15, 2014

Wrestling with Bunnies

Photo description: Ruby and Sadie with Chocolate Easter paintings of bunnies in various activities.
I have a bit of a thing with the Easter Bunny.

To me, Easter is the holiest of the Christian holidays and I've always thought that the cultural celebration with bunnies and chocolates trivialize one of the cornerstones of my faith. So you won't be seeing me chowing down on Easter eggs - I'm lacto - ovo vegetarian so I'd be allowed - over the holidays. I'm not into it. Don't care for it. And, of course, it's easy to simply opt out.

Even so, when the girls came to visit last weekend, Joe and I had picked up some Easter chocolates for them. They love the 'bun' they love the 'eggs' they love the whole fun of the whole thing. While I enjoyed watching them try to eat the various colours: Ruby, "I haven't ever had green chocolate before in my whole life!" Sadie: "The bunny is an artist like I am!!"

One of the benefits of having worked with people with intellectual disabilities over the years is learning the difference between: what is mine and what is not mine; fact and opinion; my rights and your choice. Many of these lessons have been very hard ones for me. Many of these lessons have been written on both my heart and my soul. These lessons have taught me that I don't need to subjugate someone to my point of view to make my point of view valid. That I don't need to assert my will to prove that I have a will. That force accomplishes nothing.

Neither of the girls asked why we weren't eating Easter candies. We didn't make a show of our abstention, we didn't want to subtly draw them away from their fun and into a discussion of our point of view. There is time enough, when they are older for them to come to their own conclusions about their faith and their traditions.

Of course I think that children need guidance, but knowing what they need guidance about, and when they need it is part of any adult's relationship with children. For me, and for Joe, wrestling a fictional bunny to the ground in front of two children seems a bit ... a bit ... unEastery. If that isn't a word, it should be.

Monday, April 14, 2014

Thanks for Nothing

Years ago I wrote an article called 'Culture to Culture: Issues in Deinstitutionalization.' In it I remarked that people with disabilities can get 'gratitude fatigue' from the constant expectation of their 'forever gratefulness' that they were home, in the community, from the institution. Some of what I wrote in that paper was considered a little controversial and a little outrageous. It's all old hat now, and, indeed, I hadn't thought about the paper for a very long time.

I did on Saturday.

Joe and I were leaving the aquarium, long ahead of the rest of the family, as I was uncomfortable in my chair and I was tired from steering my chair around so many people. The concentration involved in getting around and not slamming into someone is almost superhuman. So, we said our goodbyes just as the kids were about to experience SHARK BITE.

The exit out of the aquarium is, conveniently, through the gift shop. We picked out two tea shirts, that came with matching tiaras, for the girls. I waited just outside the store, just in front of the exit gate marked with the disability symbol. There were two mid thirties women and one man, of the same age, who were standing outside, also waiting for someone. When I saw Joe clear the line up, I pushed the gate open and exited. I was being watched by the group, I am a travelling entertainment extravaganza, I smiled at them hoping that would end the observation.

One of the women called over to me, "We knew you could get through that gate yourself."

Again, from me, a smile.

And a thought, "Why am I in this conversation with strangers."

She continued, "We didn't help because you didn't ask."

I said it, I didn't want to, but I did, "Thanks."

Shit now I have to be grateful when people don't do a freaking thing! I wrote about gratitude fatigue and now I'm experiencing it.

Don't go all hyper-critical on me. I am grateful. I think gratitude is a wonderful thing. But what's really tiring is having gratitude pulled out of me. I just wanted to go through the gate, join up with Joe and head home.

But no.

I had to be grateful for being not helped first.

Sunday, April 13, 2014

Mani Petty

Yesterday Mike, Joe and I split up, all off to different duties. Marissa and the girls were off getting something called a mani-pedi or some such thing. Joe had gone home to make a quick lunch, Mike was heading back to be with the girls when they finished, and I went to do some banking as Joe and I needed some cash. As always, my wheelchair made being an equal participant a given.

I entered the bank and saw the long row of bank machines with only one being used. The accessible machine, of which there is only one, was right next to the two young men using the other machine. I thought nothing of it. I prefer this machine, though I can use other machines, because it's accessible and as a result is MUCH easier for me to use than any of the others. As I was alone, I didn't want anything to happen for which I might need help.

When I pulled into place at the bank machine, I first heard the chat between the two young men stop and then felt their activity cease. These bank machines are in a long row, all tucked up to each other. Between each of them was a small barrier. I began to tense up. Questions about safety came to mind. Why where they no longer talking, no longer doing their banking.

One of the men spoke, breaking the silence, "Why, when all the other machines were free, did you come right over by us?" Then the other spoke, "Yeah, what's up with that?" I felt their hostility flow over me, and, to be frank, didn't understand it. I backed up and turned towards them, "Why are you even talking to me? I'm just doing my banking."

The guy who spoke first said, "There were all those," indicating the long row of machines, "and you came to this one beside us. What's with that?"

I said, "Really?? You are really asking me that?"

Now they are both standing in front of me now. In answer I just pointed to the wheelchair symbol. "See that?" Then I pointed to my wheelchair, "See this? I don't know how far you got in school but I'm sure you passed matching one thing to another."

They were quiet so I continued, "So, I answered your question, let me ask you one. Why did you choose to come and stand right by the disabled access one when you had a lot of other choices, are you looking for easy victims or something?"

Now, I don't care that they stood where they stood, but they had questioned my motive and I was then in the mood to do the same. Turn about, fair play. They stumbled an apology.

I didn't feel very good about this interaction. I didn't like the feeling of vulnerability that came with being alone, in the vestibule with the bank machines and facing two young inexplicably angry men. I didn't like the sudden need I felt to get back at them.

No bell rung but I won that bout.

But, I didn't feel even slightly like a winner.

Saturday, April 12, 2014

Inclusion: Small And All

Last night we all packed into the kitchen. Ruby and Sadie, their dad, and Joe and I. We were all set tasks that would result in individualized pita pizzas. The girls wanted to be involved in all aspects of production. From putting on the pizza sauce, cutting the vegetables, shredding the cheese and assembling the entire thing.

Even with such a small kitchen, there was room for all of us, room for eveyone to make a contribution. The girls loved being involved in the whole process, and, of course, so did all of us. It's wonderful to everyone acknowledge everyone's desire to participate, everyone's opportunity to try things that interested them, everyone to feel valued and to feel like they were wanted, welcome and that their contribution had worth.



A Contribution with Worth.

It's not much to ask for. Children who had been previously running and playing and laughing, now were highly focused on the task of making dinner.

It would have easier to have just made them ourselves.

But it would be wrong.

Because exclusion is, isn't it.

If we can make inclusion happen over just a pizza, surely it can be done on a larger scale over justice and peace.