Sunday, April 20, 2014

He Is Risen

(originally published in Mouth Magazine, reprinted in "A Real Nice But: articles that inspire, inform and infuriate, from Diverse City Press)

Snow fell, four inches deep. Sweeping it off the car was not the way to celebrate Easter and usher in a new season.

My feelings were jumbled from a conversation days earlier. I had been consulted on the rape of a young woman with a disability.

We were faced with the fact of the rape, the fact that the courts wouldn't believer her and that society doesn't take crimes against people with disabilities seriously. The day was a hard one. At the end of the day I was challenged.

The staff who had been there almost from the moment of the rape and through all the events that followed, mocked me. She asked, "How can you believe in God, in Jesus, in Easter? How can you believe that whole story of death and resurrection? How can you not see that it was simply a story built to explain and humanize the magic of Spring.

"How can you look into the eyes of a woman, raped and brutalized, and say that you believe in a compassionate God?

"Fool." She actually called me a fool.

Driving to church, I desperately looked for signs of spring. It became important for me to see a bud, some green, or hear the sound of even one bird. No colour, no sound, just the white of new snow. Easter. Spring. Hope.

How can I believe?

I thought of her, a woman with Down Syndrome who trusted too often, too quickly, staring at me when I asked her to tell me what happened.

I have no trouble believing in the betrayal of trust. I know that some early Judas could betray a man who trust too often, too quickly. I know that the world is full of those who simply can't be trusted. I know that friends can hurt and family can bruise. I have no trouble believing in the betrayal of trust.

Turning the corner towards the church, I turned on the car radio for distraction and heard that the trust fund to liberate a man who murdered his daughter because of her disability had reached a significant amount. I heard that support for his cause was strong.

I heard that a young boy with a disability had to fight for a lung that the hospital thought would be wasted on him. I heard that when it was announced that the transplant would be done, members of his town, his province, tore up their organ donor cards not wanting to save the undeserving.

I thought of her eyes. Eyes that knew, instinctively that the law just wasn't there for her. A society that sees murder as kindness for those who are disabled will not care much if one is otherwise brutalized.

I have no trouble believing in the hatred of the crowd. I know that people often call for the death of an innocent. I know that society can be convinced to hate those who are blameless. I know that millions will march lock-step behind any who preach of an Aryan race. I have no trouble believing in the hatred of the crowd.

She told the story with quiet and calm. She told her story again and again. First to us. Then to the police. Then to the doctors. She told of how the man had hurt her. How he had forced her to the flow. How he had made her take off her clothes. How he had pierced her. Her eyes filled with tears the third time she told the story. I thought the tears would never stop.

I have no difficulty believing in crucifixion. I know that there are those who pierce flesh with bullets. I know that there are those who would pierce hearts with vicious words. I know that there are those who would pierce souls with messages of hatred and bodies with iron rods of power. I have no difficulty believing in crucifixion.

There it ends. I know that Christ was killed, blameless. Snow falls on Easter. Spring buds hid from the cold. Parking, I cried. "Fool." I had been called a fool.

I remember hearing that the doctor stood her on a cloth and had her strip. Her body searched as they prepared evidence. Her pubic hair combed, the wounds inside her measured and documented, hair pulled from her body to be matched.

Then, thus ritually "cleansed" of evidence, she was bundled into sheets and then taken home. She had finally run dry of tears. She allowed herself to be bathed and then lifted to her bed. She dropped into sleep as if dead.

I have no trouble believing in death. I know that death comes as a relief to most who struggle through this life. I know that most die crucified in one way or another by cruelty, indifference or pain. I know that for those who commit suicide, death is the portal to a world free of hurt. I have no trouble believing in death.

Remembering the phone ringing the next morning I had woken from a troubled sleep. Sleep filled with anger and hate. I heard her voice. She was up, refreshed and strong. She said that she didn't care if the police didn't believe her. She said that she wanted to go to court and tell the world what he did to her. She said that she wanted everyone to know that she was not a liar.

She said that even if he goes free he will know that she knows. She spoke so clearly that  I couldn't hear her disability through the complex notions of which she spoke.

Tears again. I felt ... Joy? Sadness? I don't know. But for the first time I understood Easter. I understood Spring. I understood Hope.

The miracle of Easter is not that Christ died for His beliefs. We have sacrificed ourselves since the dawn of time. We can all imagine dying for at least one principle.

No, the miracle is not that Christ would die. The miracle is that he would want to rise! The miracle is that he would get up and go on. The miracle is that into a world where there is betrayal, hatred, crucifixion and death, he would rise again.

The miracle is that a woman, despised by society and brutalized by one she trusted could get up in the morning and go on. Resurrection. Rising again.

Maybe I am a fool. But I see a woman rising on the day after rape as resurrection. I believe that Christ wanted us to know that there is always hope. There is always a reason, every day, for rising. Resurrection.

I opened the car door and stood. Hope, to go on again, resurrected for the thousandth time into my own life.

Come, spring.

Saturday, April 19, 2014

Tripping over a Trigger

Joe and I had gone out for lunch with friends and, on the way home, decided that we'd stop at Shoppers Drug Mart to pick up a couple things we needed. As it was Good Friday, we were surprised to see them open and even more surprised to see that the store was doing a very brisk business.

As we roamed around the store getting the few things we needed, we both reminisced about when we first moved to Toronto and, even on a typical Sunday, everything was locked up tight. When we finally had all that we needed, we got into the line up. It was a fairly substantial one but neither of us was in a rush so we chatted quietly and waited our turn.

When we got up to pay, we put our things down on the counter and the woman working there quickly and efficiently began to ring them up. I decided I wanted to pick a few scratch and win tickets from those displayed on the counter. The woman, who was really charming, pulled them out and I was in the middle of picking five tickets when it happened.

A voice came from the line up behind us.

"Hurry it up will you!!"

Then.

"Come on, come on, don't take all day about it!"

I grabbed the tickets and grabbed my wallet in preparation to pay. I had begun to sweat. My heart was going in my chest, anger and fear and outrage, stole my words. I've had this happen before, It's gone very wrong before. I just wanted to get my stuff and get out of there. I had shrunk down so that I was experiencing this completely alone and completely in my head. I looked up to the cashier and saw that she was laughing. WHAT??? Why would she laugh about this? I'd thought she was charming. Now she's laughing at me too? I feel sick to my stomach. I don't even want the stuff anymore, I just want out.

I turn to look at Joe, HE is laughing too. If anyone understands these situations, Joe does. And he's laughing. He had been beside me, he had taken a step back and was looking back in the line up. Now he's TALKING to someone. I move my chair slightly, it's a fellow who lives in our apartment building. I don't know him at all but I do know that Joe knows him. Joe, who works from home, has come to know almost everyone in the building.

Joe looks at me, sees my face, twigs to what's happening in me. He says, "He always give me a hard time."

Oh. My. God. He wasn't even talking to me. He was talking with Joe, that's the way they are with each other. They joke around.

I just thought it was me.

Not because, it's always about me, but because it usually is.

I'm used to being seen as in the way, as not having a right to the space or the pace that I take. I am used to being the subject of rushed mutters from people living artificially busy lives. I am used to being the road block, the cause of the detour and I know that taking a step around me is seen as a long and unnecessary journey.

But it was just a joke.

A joke.

On the way home, Joe notices that I've gone quiet. I tell him, "I didn't know it was a joke. I thought I was getting yelled at again."

Now it doesn't matter that it was a joke.

All the same reactions happened, all the same emotions sprung forward, all the insecurities that came with my disabilities, and others from before, came out in force. They were triggered by a joke, made to someone other than me.

We came home and I spent sometime just quietly, and slowly, telling myself, that this time, it was only a joke.

But that fact, that simple truth, in all honesty, didn't really help.

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.


XOX


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.


 XXOXX


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.


XXXOXXX


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.


XXXOXXX


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.

Wow.

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.