Tuesday, April 29, 2014

A Moment of Community

We were just two blocks from home. Sitting at a red light watching people on the crosswalk as they followed the chicken to the other side of the road. Near the end an elderly woman, in a power wheelchair, worked her way through the crowded crosswalk to the curb cut on the other side.

There she found another crowd, standing, blocking her way up onto the sidewalk. She looked up. Everyone saw her, but no one responded to her presence. My window was down a bit, to let in the nearly warm weather, and I heard her ask for space so she could pass by. Everyone, then, moved to make a pathway for her.

As she came by me, she spotted me in the car, saw my wheelchair sitting behind me, and smiled. A real genuine smile. Then she pointed, with a gesture of her head, to the crowd behind her and rolled her eyes. We both laughed.

She gave me a big wave, and she was off.

I love these little moments of community. Moments where you know, absolutely know, that another has had the same experience and totally gets what that experience means.

There can be an isolation that comes from being alone in an experience. That isolation is lifted in the briefest of encounters.

I could see by her grin that it was lifted for her.

I hope she could see by mine, that it was lifted for me too.

Monday, April 28, 2014

The Other Side of The Bottle

There is a man who lives in my apartment building who, in two ways, frightens me. Most of the time when I see him he is overtly hostile to me, sometimes making rude comments about either my disability or my weight. I brace myself when ever I see him get off the elevator, or when he's waiting in the lobby as I get off the elevator. Mostly he just glares at me are points at me and rolls his eyes. I've been the brunt of this kind of thing all my life, in one form or another, and have learned some coping skills to deal with his toxicity. He's mean. I get that.

Oddly, with what I'm about to say, this is how I prefer him. I prefer the predictable hateful guy, who makes predictably cruel remarks or engages in a kind of tiresome, routine, boringly repetitive nastiness that can be predicted on sight. I prefer him this way. Even though deep inside I find the sight of him disturbing and somewhat frightening. I can deal with this level of fear.

I had heard, from someone who wanted me to understand that his behaviour is because he's had it tough, that he was an alcoholic who had been sober for several years. There was more to the story but I need not tell it here. I get that people have had it bad, I don't get the idea that this gives permission to be randomly mean to other people.

Well, his sobriety ended a few weeks ago.

Now he's less predictable. When he gets off the elevator, and he's been drinking, he lumbers over to me, leans in and in a very patronizing way attempts to be friendly to me. He gets so close that the alcohol in his breath burns off the hair in my nose. "How ya doing, buddy?" is his most common greeting. I back away from him, he doesn't notice, nor does he notice that I don't answer, he expects the same kind of response to his friendliness from me as he would one of the pets who lives in the building. A look, a back away, and that's it.

This guy frightens me even more. His friendliness, I figure, can turn into hostility in a second. The lurching unpredictability of his mood and his manner has me fearing for my safety in a new and different way.

As he's done nothing that's actually reportable, or considered particularly notable by the powers that be, it's up to me to come up with strategies to deal with our random meetings. And that's what I'm doing. I'm developing ways to be safe in potentially dangerous circumstances. I'm actually pretty good at this, I'm feeling confident.

Creating safety in unsafe situations is something that people with differences need to be good at. It's a skill. It can be learned and it can be taught. And it should be, because, gosh, it's a skill I use over and over and over again.

Sunday, April 27, 2014

Ruby's First Communion

For Ruby on the Day of Her First Communion

Yesterday, I met a woman
Who told me
That the world had turned her bitter.

Yesterday, I met a man
Who told me
That the world had turned him hard.

And I understand
The world can be hard
Hurt can turn bitter in our mouths.

You know already, Ruby,
That people can be mean.
You know already, Ruby,
That people can be kind.

You know already, Ruby,
That life gives you choices.
You know already, Ruby,
That choices can be hard.

Yesterday, I met a person
Who told me
That the world was a cruel place.

A place where difference
Is a crime
And hurt the penance to be paid.

A place where kindness
When offered
Is an oasis in the desert of castaway eyes

Today, Ruby, you take
and you make a promise of

Communion with God
Communion with the people of God

Communion with your faith
Communion with your fellows

You taste with your tongue
Your promise

Your promise to be
With God
With People

Your promise to be
The hands of God
The voice of compassion

You promise to
Walk into the desert
With kindness to offer

You promise to
Meet the bitter
With sweet

The hard
with gentle touch
and warm welcome

It is not easy for us, Ruby,
To remember God
In our hearts

It is not easy for anyone, Ruby,
To turn the other cheek
Rather than be the one that strikes it

But I pray, Ruby,
That as you grow
You hold on tight

To the little girl
Who used three year old hands
To help me put the footrests on my wheelchair

To the little girl
Who dropped her change
In the homeless woman's cup

To the little girl
Who super soaked
The crowd at the pride parade

Hold on tight
To the little girl
Who loves to help

Hold on tight
To the little girl
Who is unafraid of diversity

Hold on tight
Don't let go
Of what you know now

You know that
The world is made
Of difference

That the world is made
Of the diversity
Of colour and of texture

That the world is made
By God
Who loves what was made

And you know
that today as you eat
at the table of God

That you promise
To be in Gods world
To do what God puts into your heart

That you promise
To be the oasis
Not the desert

That's a big promise
But you have a big heart
Where God has always lived.

Saturday, April 26, 2014

A Desperate and Disturbing Read

Reading is one of my chief pleasures. Joe, too. Because of this we are both very particular when we go shopping for books. We like a variety although we have a real love for Nordic crime fiction and historical novels. We are even more choosy when it comes to choosing gay novels and have a good track record of reading amazing books. Dante and Aristotle Discover The Secrets of the Universe, for example, is simply one of the best books we've ever read, gay or straight. When we travel we try to take enough books with us to 'do' the trip. On our last trip to the Maritimes, we ran out. We hopped immediately over to the bookstore after work and I picked up a book, The Desperates by Greg Kearney. It looked like fun.

It wasn't.

Somewhere in the book something happened. It was a choice the author made that made him too present in my reading of his writing. I began thinking, not of the book, about about the man who wrote the book. On one page, somewhere in the first third of the book, we are told about a young gay man's experience of bullying in school. The stuff that was there was sadly unsurprising but surprisingly well written. However, on the exact same page, the SAME page, the author uses the word "R#tard" for comic effect. Something he does a few times in the book. Later on he uses another disability negative word, again for humour.

I know, I know, I know, people yatter on an me about how sometimes that word is used to tell us something about the character, sometimes the word is used to be authentic to the speech patterns of a particular group, sometimes the author is using the word for literary reasons. I've had that speech, along with the wagging finger many times over. And because of that, it took me a long while to decide to write this. I thought it through. I don't think that's what was going on here, I think the author genuinely thought it was funny. Worse, he wrote with a kind of surity that we'd all find it funny too.

What really shocked me, though, was the R-words appearance ON THE EXACT SAME PAGE, of a passage that existed to let us know how tough gay kids have it in school,  Readers are expected to react with empathy for the gay kid and simply find funny a word which makes school lethal to kids with intellectual disabilities. The same page!!! Only a few lines apart.

Think about it. (Because I sure did.) The R word appears before passages of school bullying, this means that the author must have been gearing up for it, getting ready to writing about school victimization, thinking about all the harm that is done by bullying and in that frame of mind pops out a word that people with intellectual disabilities have stated clearly is HURTFUL and DAMAGING.

Later on in the book when other disability negative words appear, I'm not surprised, numb to them being there. I finished the book because I finish books I start. I could have stopped, but that would have helped the cause how?

Normally when I read, if it's an excellent book, I don't think about the author much. It relate to the story, I get swept along by the narrative and I love the ride. But this time, that decision, to use the R word right before writing about the effect of words on young gay people, brought the author right into my mind. I looked at his picture on the back flap of the book several times. I tried to imagine a conversation with him. I wanted to know why he felt it was acceptable to bemoan the bullying of one while engaging in bullying of another. Why did he make that choice?


He's off my 'too read' list. I feel like I've met him and didn't like him. I feel that if I met him he'd go away and write about fat guys in wheelchairs and get a real laugh out of it. I feel that if I met him, he'd not be interested at all in the effect of disability negative words on my reading experience. These are all assumptions of course, I did try to find way to contact him, I wanted to write him a letter, I wanted to ask him some questions while hiding my fat disabled self behind a computer message. But that wasn't possible.

There are consequences to the things we do and say. It may not be much of a consequence but Mr. Kearney now is filed in my mind as both an author not to read again and as someone who has an egocentric approach to pain - if it hurts me and mine, it's bad; if it hurts you and yours, it's kind of funny.

But the book has been closed for a couple weeks.

Now, with this, the chapter is closed too.

Thursday, April 24, 2014

Blacks Is Photography

It took a little while to think of where to go. We'd always just gone to the big Sears store down at the Eaton Centre to get our passport photos done, but it closed a few months ago. Suddenly we remembered that there was a Blacks Photography store only a couple of blocks from us. I was a little concerned because I'd shopped there before and it's a small store. But we could think of no where else to go, so off we went. I had to get passport photos done, not for a  passport but for a new piece of 'disability ID' that I need in order to access a new service being offered in the city. We'd been putting off getting it all done. Today was the day to get the photos.

As we entered the store I saw a sign for 'Passport Photos' in far left corner of the store. Great! Then when we got closer I could see that it would be difficult, if not impossible to get my chair into position to have the photo taken. Great. But I told the clerk that I wanted a photo, we paid for it, and then we started trying to get me in position to be able to have the photo taken. My chair was just a little too wide to back into the space I needed to be in.

The problem was that the space was between a counter and a wall which was had hooks all over it with products hanging from those hooks. They stuck out several inches making an already narrow space even narrower. I just couldn't get into position. I tried getting out of the chair and standing but I was too tall, I forget, because I don't stand very often that when I'm up I have a lofty view. The clerks, the three of them, began talking about options.

They decided that they'd just take the hooks and the product off the wall which would create much more space and I could then back into it. I protested because that would be a lot of work but they brushed the protest aside and just started clearing the portion of the wall that had blocked my entry. Once done, sure enough, I was able to back into place, get my picture taken and be done with it. We were told that the photos would be ready in 20 minutes, so we went off to do the rest of our chores telling them that we would be back.

When we got back I looked at the pictures. They were fine, I always look like I'm angry for having got caught in the middle of a mass murder in these pictures, but they were fine. I then took a moment and thanked them all for doing what they did. They could have easily said, "Sorry," and sent me on the way, an address for another store in my pocket. But they didn't. They were solution oriented, they were pleasant, they acted as if they WANTED to do what it took to provide the service.

They said that my 'Thank You' wasn't necessary, but it was. We all know that most often 'accessibility' is an attitude, a willingness to welcome, a creative approach to service. Well, all three clerks showed that they were willing to be accessible and that's what made it possible for the store to also be accessible. That, in my mind, deserves a thank you.

I got home and looked up Blacks on line and found them, on the bottom of their page, they have a link to their Accessibility Policy and in it it states: At Black's we value diversity and inclusiveness and support a work environment where all individuals, including those with varying abilities, are treated with dignity and respect. Our workplace culture extends to our customers, together with a commitment to accessibility for all.

I've read words like these a thousand times before. Usually, they are words that don't action into meaning. Today, at Blacks, they did. I've got the pictures to prove it.

Wednesday, April 23, 2014

Cookie Stat!

I was stumped at what to do next.

I have this big job, I have that tough task.

I couldn't choose.

So I sat here stumped.

Then I knew what to do.

I poured a cup of tea.

I got a cookie.

A low sugar, high fiber, I'm in my 60s, cookie.

But it was still a cookie.

And I dipped that cookie into my tea.

I held it there until it softened.

It took a while.

Then I plopped the steaming hot cookie into my mouth.

And let it sit there, sweet and gooey.

Tasting like a regular cookie rather than a cookie to keep me regular.

I didn't think about the big job.

I didn't think about the tough task.

I just enjoyed the cookie.

It didn't make the choice easier.

Cookies don't have that power.

But ... it took the pressure off the moment.

And ... it took the pressure off the brain.

And that did make the choice easier.

I think life should give everyone a cookie PRN order.

Tuesday, April 22, 2014

Perseveration Much?

The movie was better attended than we thought it would be. That surprised us. What didn't surprise us was that the one accessible seat, with the symbol all over it, was taken. There were lots of other seats available, but that one was gone.

I asked the woman sitting there if she realized that the seat was an accessible seat. She said that she did not and immediately got up and grabbed her stuff. She looked back at the seat, once she stepped out, and said, "I honestly didn't notice the wheelchair symbol." She then took a middle seat in the next row forward. We thanked her for her immediate willingness to just move a little forward.

It had been a simple and pleasant interchange.

Or so we both thought.

As we sat through the trailers and munched our popcorn, we noted that the woman seemed to be a little bit upset. I wasn't sure why. It had been a simple and pleasant interchange. She had chatted a little bit with her new seat mates, she had an empty seat on either side of her so she wasn't wedged in next to anyone. It all seemed to be so easy and so, I'll say it again, pleasant.

The movie started.

About ten minutes in, she stood up and dashed out of the theatre.

I watched the movie while running through the request I made to make use of the accessible seat space. I thought of the little chatter that happened with us, both our thank yous, the chatter she'd had with her new seatmates. It had all seemed so easy and so friendly.

This morning, I got up to write about this and realized while doing so ...

What if this isn't about me at all?

What if this has nothing to do with our interaction?

What if the two things, my asking, her leaving, have nothing to do with each other?

Why am I not trusting that my memory and Joe's confirmation that it had all been pleasant and friendly?

Is there a danger of making connections that may not be there?

Is disability sometimes not really part of the story at all?

And the most important question: Why am I still thinking of this four days later?

Monday, April 21, 2014

Reporting, Permission and Expertise

Sometimes what's Rolling Around in My Head comes Tumbling Out of My Mouth:

A new convenience store has opened around the corner from us. It's a big one and it would be really handy to shop in. I knew they were doing renovations to the store so I went over to look and see if they'd made it accessible. It's easy to do because it has only one shallow step and then an long entranceway. A ramp could be put there, except for the work, easily. Instead I found that they'd fixed the long crumbling step by pouring new concrete and keeping the step there.


I'm going to have to call the city to find out the rules about this. It seems to me that if a building can be made accessible and it's being renovated it should be made accessible. But, I'll give Rob and call and see if he calls back.

Later that same day, Joe and I were crossing the street up at Yonge and Bloor. A fellow was handing out flyers announcing the fact that the new convenience story was now open. He handed one to me. I said, "That store is inaccessible. When they renovated, they didn't bother to remove the step. It's inaccessible to me and to anyone with a mobility device." He put his hands up as if he had been attacked, I didn't yell, I used a conversational tone of voice, I wanted him to have this information. "I didn't have anything to do with that, they just pay me to pass these flyers out ." I nodded. I understood that.

As I was crossing the road a woman, who had overheard the conversation, told me that I'd been unfair to the man. That he "couldn't have known it was inaccessible," and isn't responsible for the decision of whomever rented and renovated the store. I said to her, "I only informed him of the inaccessibility. I wasn't rude."

"And what is he supposed to do with that information? Magically make it accessible?" sarcasm dripped from the words.

"No," I said after taking a breath, "I think it might be wise for him not to hand the flyer to those who can't use the store. If a store disallows a part of the population access, then you shouldn't invite them to come visit."

"Well," she said, considering, "you have a point."

"And may I point out, to you," I said extremely calmly, "that I don't report to you. That disabled people don't need permission from the non-disabled to speak out about something affecting our lives. I don't need your direction. I don't need your input. When it comes to my life as a disabled person, I'm the expert OK? I'm shocked that you felt that somehow you had the right to give me corrective feedback."

"I was just trying to help."

"So am I," I called to her retreating back.

 All this and we were just going for tea. As we sat down, Joe passed me my tea and said, "Ah, just another lecture tour of the neighbourhood."

"Ha, ha," I said.

"It wasn't a joke," he said, smiling.

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 believe 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 trusted 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 floor. 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!!"


"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.


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.

Friday, April 11, 2014

The Guys at The Conference

Hey Guys:

I don't know if you read my blog or not, but if you do, I'd like to apologize, just a little bit for our brief chat yesterday. I'm sitting here and trying to figure out which college you said you attended, but I think it was Fanshaw. We met just as I was getting ready to leave the conference site, which was just after I had presented with my team, Chanelle and Donna, on the topic of 'Determined Indifference'. A session which you had attended.

You stopped and told me that you were students and that you really liked one of my books, 'Power Tools' - one of you even said it was one of the best books he'd ever read. You joked and said that I was kind of like royalty down at the college, another said something about a 'rock star' we all laughed. It was nice. I made a silly joke and then we were all on our way.

In moments like that, I often don't do or say what I'd really like to do or say. I have always been a little shy about praise or notice, it wasn't something I grew up with or have grown used to. As a result, I get flustered and use humour as a way out of it. I would have liked to have said something much different.

I would have liked to have told you that your impulse to stop and give someone positive feedback is wonderful. What's even more wonderful is that you did it. You had the courage to be positive publicly. So many compliments, so much praise remains unspoken. Almost all positive feedback is left unsaid. We think these things, we, many times, do not move from thought to action. Keep fresh your ability to act on positive thoughts and impulses. One of the things I'm sure you are learning is about the positive approach ... well, you all demonstrated that in one fell swoop.

More than that, I would have told you that you have chosen a field in which there are far fewer men than women. I know when I chose to work with people with disabilities there were those who thought that 'caring' was the job of women - that men didn't do 'that kind of thing'. They couldn't be more wrong. This is a field that needs people who have kindness, compassion and a drive for social justice. I can think of many men who fit that description. Good on you for your choice. Good on you for following your own path. It's a path that I have walked, and then rolled, for over forty years. Forty very good years.

I also would have told you that what you said really mattered to me. I like to know that my work has made a difference, that my writing is being read. It makes it all matter.

So, guys, I'm sorry.

I should have said those things, and more, but didn't.

Hope you enjoyed the conference, hope you had lots to talk about on the way home. Glad to have met you all. Really!

Thursday, April 10, 2014

Dinner Without The Show

Joe and I had dinner last night with Chanelle and Donna (alpha order) last night. We are here to present a conference session today. I don't often get the chance to present with others and I'm looking forward to the experience. I'll be using POWERPOINT - something I never do - and they've promised to help me through the experience. Joe and I are staying at a different hotel, one that we have stayed at before and knew about its approach to accessibility. It's about a five minute drive from the conference hotel - which is nice but much older. We didn't want any problems with the various 'definitions of accessibility' so we are staying off site.

Our hotel is right next to a outlet mall and right across from a Boston Pizza. We all agreed to meet in our lobby and stroll over to the restaurant. I've worked with Donna and Chanelle (reverse alpha) for a long time and both of them have only ever known me as a disabled person. We work well together as part of a larger team but we don't often ever meet, like this, for dinner or other social kind of events. We had fun.

Part of the reason it was fun for me, and only part because this isn't in my consciousness at all times, was that they are so at ease with my disability. They knew how to help unobtrusively and they knew when to just let me do what I do in the way that I do it. We were taken to our table in such a way that I had to wend through a small pathway in a forest of chairs. And you know what I did, I wended through a small pathway. Neither Chanelle or Donna (alpha) rushed forward to help, bulldozing chairs over and out of the way as has happens far too often from those who don't understand that most of us with disabilities don't want to turn into the 'entertainment part of the evening' for other dinners. The show of helping makes a spectacle of disability. They didn't do that.

I'm often with people who I know as acquaintances and while I enjoy seeing them I sometimes have to grit my teeth because many are still at the stage that they think that they 'prove' their comfort by being a cheery helper, like Mary Poppins on speed. In the same situation, my short trip to the table would have been accompanied by levitating chairs and diners pulling chairs in dramatically - the special effects created, not by the magic of movies - but the kind created when people think your needs are special. Getting from the door to the table isn't, of course, a special need.

Anyways, it was a nice evening with lots of laughter and an ease of being that is sometimes difficult to find. I asked them to find out a couple of things about the hotel where we are presenting so that Joe and I know what kind of barriers there might be tomorrow. This morning I got up to a text message with two attached photos that allow us to see what we were asking for. Quick easy. Help when needed and asked for ... without the show.


Wednesday, April 09, 2014

Just Like Other Daughters - A Review

Today we have a book review by Karin Melberg Schwier! This came about because Karin emailed me about this book she was reading. Her emails about the book, and her reaction to it, had me asking ... why not write a review for my blog. Karin quickly accepted. There are spoilers in this review - lots of them - but I think they were necessary in order for Karin to discuss her reaction to the novel.

Just Like Other Daughters
By Colleen Faulkner
Kensington Publishing, 2013

Review by Karin Melberg Schwier

This is a fictional tale about a single mother in her 50’s and her daughter, 25, who has Down syndrome. We are told it’s about a mother’s struggle to support her daughter, despite her disabilities, to live a full life that includes marriage and a sexual life with a partner. I don’t think it is. And it made me grumpy.

Despite reviews I’ve read that paint this mother as a saint for devoting her life to her daughter, I think this novel a profile of a mother with a classic case of Munchausen’s by Proxy. She’s a woman with a constant need for others to see her as a martyr caring with supreme sacrifice for her daughter who, according to Mom, can never really care for herself. This mother fiercely “protects” her daughter with a disability, but from I could see, makes little effort to teach her daughter any real independence. Maybe I’m just grumpy, but Alicia is the kind of parent I am determined to never become. If you read on, there will be spoilers.

This story is described as “an unflinching yet heartrending story of mothers and daughters, and of the risks we all take, both in loving and in letting go.” Alicia Richards, the main character, is a single mom and college professor “trying to do her best” for her “Down syndrome daughter” Chloe, 25. Alicia terminated her first baby when she and her academic ex-husband had an affair (she was his student, he was married). “But my arms never stopped aching for the first child.” Big foreshadow. Then she and Randall married and had Chloe. Now her ex is still a serial womanizing department head who fools around with his students and, she says, is no help at all in her life. He barely sees Chloe long enough to take her to a fast food restaurant once a week. Alicia’s own father and stepmother are distant and can’t interact with Chloe. The reader is again and again reminded that Alicia must do everything herself. “I’m her mother and I love her more than anyone else in the world loves her. How can I not do everything for her until the day I die?” Well, giant red flag here. At first I hoped this character was just having a momentary martyr moment, but it just goes on. And on.

I started stewing when I began reading this book and have been stewing since I finished it a couple of nights ago. I should say I get that this is fiction. I think Colleen Faulkner is a skilled novelist. She weaves a good story and I was drawn in, irritation with the protagonist aside. In the author’s Q & A at the back of the book, Colleen notes that a friend who works in a group home informed her research about “these special people.” I found the not infrequent “factoids” and generalizations about “Down syndrome people” – a phrase that rankles – to be distracting and steeped in the custodial model of care. These were sprinkled throughout the story and felt like educational PSAs.

Or maybe I’m just totally ticked off at Alicia, the main character. I kept hoping her gay Jiminy Cricket friend Jin would grab her by the shoulders and yell, “This isn’t about YOU!” But it kept coming back to that, all the way through the story. Alicia presents everything she does in the guise of helping Chloe, of being a protective mother. She offers choices, but sadly they are choices between French fries or mozzarella sticks. Stop with the fast food already! Oh, she knows she needs more “me” time. She tries valiantly but just can’t establish a relationship for herself through on-line dating, but nothing works out. Besides, she sighs, caring for Chloe leaves her without any energy for any other relationship. We see Mark the “hunky plumber” obviously waiting in the wings, even if she can’t.

Chloe interjects her point of view in the first person periodically in the book (not enough, in my opinion). I felt Chloe’s voice was used as a reminder to us that she is really “just a child.” Chloe seems relatively capable, and expresses herself well. At 25, however, her mother treats her more like she’s 6. Alicia drops the ball in helping her daughter to mature; Chloe wears childish clothes, has temper tantrums, overeats junk food and drinks chocolate milk with alarming frequency because it’s genetic and, after all, “Down syndrome people” have “a zeal for food.” I got the distinct impression that everything childish and immature about Chloe was because that’s just the way “Down syndrome people” are and confirms all Alicia’s fears that her daughter will never grow up, really.

Alicia indulges her daughter, keeps her child-like and therefore dependent. Chloe weighs more than Alicia, who vaguely thinks about introducing a healthier diet, though she never seems to get around to it. Reluctantly, Alicia allows Chloe to attend a church day care (instead of volunteering or getting a job) and does crafts. Alicia hovers, following the bus to the church in her car, even showing up to sit at the back of the room, much to Chloe’s disgust. To her credit, Alicia worries that she might be too overprotective and discusses it with a therapist. Turns out, she and Chloe have been seeing a psychologist once a month for years because “it was my duty, as a parent, to see that Chloe got counseling.”

When Chloe meets Thomas Elden, she immediately develops a girlish crush and soon insists on getting married. There is no sexuality education, no real preparation for an adult relationship. Allowing Thomas to come over so they can watch Disney movies and kiss each other seems to be the biggest initial concession Alicia makes in “allowing” Chloe to have this relationship. When Chloe says she wants to get married “just like Beauty and the Beast,” maybe that would have been a clue for Mom to get some serious education started. Why it hasn’t happened yet is beyond me; Chloe is 26 for heaven’s sake. She searches the Internet for information on “sex and the mentally handicapped.” When Randall suggests “we need to accept that our daughter is maturing and she needs to be taught the aspects of adult sexuality,” Alicia feels he has no grasp on reality. “I’m willing to let her spread her wings,” she tells him (I seriously doubt that) and goes on to say, “But it’s my job to make sure she doesn’t fly to close to the sun.” Wow, talk about taking the moral high road.

Got to give it to Chloe, she persists in snagging Thomas and insisting she get married. The birth control happened, as far as I can tell, because Alicia was terrified that she would have to parent a child with disabilities, as if that was a forgone conclusion. The first doctor they visit (Thomas is not included in this) says he doesn’t want to prescribe birth control to someone who doesn’t seem to understand. Instead of seeing the opportunity to better educate Chloe (and presumably Thomas) not just about sex, but about relationships, the basis for all socio-sexuality education, she screams at the doctor about how catastrophic it would be for Chloe to get pregnant by her “mentally handicapped husband!” She makes a point to chastise the doctor by informing him that her title is also “Doctor.” Never mind that she teaches literature. Alicia says Chloe can barely manage the simplest of self-care, and still hands over birth control pills with minimal instruction. She just checks the pillbox to see if the daily dose has been taken. Spoiler: turns out Thomas was “eating” them.

In short, I found Alicia’s character to be someone who, instead of really working to help her daughter become a more mature, responsible adult, seems to relish her martyrdom. No one understands. No one loves Chloe more. Chloe’s father was a big disappointment (“I don’t think Chloe misses her dad; she certainly misses the chicken and fries.”) She feels the boyfriend’s parents are in “some incredible land of denial” about their son’s disability, “a place I wish I could go, if only for a visit.” Wow, again.

Thomas turns out to be a mama’s boy and a dud as a husband. Conveniently, they move away, take Thomas with them and give up all paternal rights before Chloe’s baby is born. They don’t even send Christmas presents. Leaving Alicia to deal with everything…yet again. “I realized then, that I’m strong. I never thought I was…I come to the full realization of my strength. I’m fifty-three. Young. I can take care of this baby and my daughter. We don’t need Thomas. We don’t need the Eldens. We don’t even need Randall.” On the other hand, she finds several online networks “dealing with parenting the mentally challenged” so she doesn’t have to “feel as alone as I did the first time around” and she laments being the only one who has to make “life and death decisions about Chloe all the time.”

Big spoiler alert—I stumbled across this as I read the publisher’s media release, so don’t read that either if you’re not ready to find out! After Chloe and Thomas’ marriage ultimately descends into spoiled brat pushing and hitting matches over whether to watch Aladdin or Toy Story  (what a surprise), Alicia makes another ‘factoid’ statement about people who support marriage between people with disabilities: they simply don't understand the ramifications, not like she does. They forget “the practicalities.” She underscores that when Chloe gives birth, is suddenly only concerned with having a drink of Gatorade. She doesn’t even want to hold the baby, something I found unbelievable. Of course, Alicia holds the newborn and expresses desperate relief that the baby doesn’t have disabilities, too. Moments later, in the ultimate martyr development, Chloe dies. Yep. And remember how Alicia still “ached” for that first perfect baby she terminated? Well, Chloe leaves Alicia with “my baby” who already “scored a perfect ten on his APGAR” and showed “no evidence of mental retardation.” Eventually, as in all good fairy tales, Alicia gets a “healthy baby boy” and remember Mark, the hunky plumber? The three of them live happily ever after with, undoubtedly, sweet sad memories of her “Down syndrome daughter.”

I’ve said before, Colleen is a good writer; that’s not my beef. This is a well-written piece of fiction with believable dialogue. There’s action to propel the reader forward. She’s fleshed out the characters in nice detail. But the morning after I finished this novel, I did my best time ever on the elliptical as I worked out my frustrations with Alicia. But maybe the author wanted to mess with my head. Maybe Colleen set out to create a martyred, self-indulgent character with all the earmarks of Munchausen’s by Proxy who doesn’t recognize or acknowledge what she’s doing. If so, she nailed it. But if this character is somehow to be held up as a model of good parenting, that scares me.

Chloe and Thomas’ marriage was doomed from the start. It reminded me of teachers who poo-poo inclusion because “we tried it once and it didn’t work.” Dropping a student with a disability into a classroom without support rarely works; the same goes for relationships. Instead of helping her daughter grow up, Alicia infantilized Chloe, and in so doing, made herself forever needed and forever heroic in the eyes of others. The thing that scares me most about this story is how easy it is for a parent of a son or daughter with an intellectual disability to do that. If I ever do, please send Jin over to give me a good shake.

(Karin Melberg Schwier is an author of several books about people with disabilities; she co-authored Sexuality: Your Sons and Daughters with Intellectual Disabilities with Dave Hingsburger (Brookes Publishing, 2005) which was translated into German, Italian and Korean. She lives in Saskatoon with husband Richard, a professor of education, and Jim, an 18-year veteran volunteer with the YMCA, who celebrates his 40th birthday in May. Jim has Down syndrome.)

Tuesday, April 08, 2014

Playing Hooky

Yesterday afternoon Joe and I played hooky. It wasn't really hooky as I'd finished the tasks assigned to me for the day, booked off, then caught up on work stuff when I got back. But sometimes one needs to feel irresponsible even if done in a responsible manner. Make sense? In our sixties 'roll playing' has a TOTALLY DIFFERENT feel - playing nurse and doctor now that we have both a nurse and a doctor on speed dial is, well, unfun. So, we make do with a kind of fake hooky.

We went to a Monday afternoon movie, popped into a pub afterwards, all the while checking our watches so that we'd be sure to home in time for Jeopardy. Yep. Fun. Wow.

But wait.

It WAS fun.

We had a great time.

Just pulling out of our regular routine, just making space where we don't normally make space, doing ordinary things at unordinary times ... was such a lovely little holiday.

We, Joe and I, like being responsible adults. We like following through on our duties and obligations. We'd had a real blow when we had to cancel our trip to the UK, having to undertake treatment instead of travelling was ... simply, awful. It sapped our strength and our morale was at an all time low. The progress we see, in the treatment, is there but slower than hoped for. We'd started plodding through our days. We shopped at Metro thinking 'We should be in Tescos.' I was overwhelmingly saddened when I used the last of my Marks and Spencer cologne. It's been rough.

Then, we played hooky.

We laughed.

We chatted.

We felt at ease with ourselves.

We felt at ease within ourselves.

And our spirits lifted. Really lifted. It's OK this life of ours. Setbacks will be setbacks but accomplishments will be accomplishments too. Maybe one of the biggest accomplishments is that two old men, can catch an afternoon movie and still feel naughty for doing so.

Whatever it was - it was a good day.

And we both feel the better for it.

Monday, April 07, 2014


Two agencies, Vita Community Living Services and The Centre for Behaviour Health Science, have worked together since November 23 of 2012 to create a new assessment tool: The Assessment of Levels of Knowledge - Sexuality and Consent. The tool can be used as a pre/post test for sex education or relationship training classes. It also can be used to determine if a person with an intellectual disability can give consent in the area of sexuality and relationships. The tool is designed such that if someone, undergoing a consent assessment, does not pass, the score will give information that will allow education to be pinpointed to the exact areas of need. TALK - SC will be released tomorrow, free of charge. Any clinician, educator or agency who wishes a copy of the assessment tool may simply request one by sending an email to dhingsburger@vitacls.org .

Today's post follows.

Hip Hip ...

The subway was down this weekend in Toronto. Joe and I had plans on heading down to Dundas Square on Sunday and the subway was part of that plan. We knew that buses had been put on duty to shuttle people on surface routes normally part of the subway run.

The big city buses intimidate me and I've never ridden them before. I've spoken to a number of others with disabilities who tell tales of horror the impatience and low level aggression from other riders who don't like the wait it takes to load a wheelchair onto the bus. In any case my chair, not surprisingly, is a big chair and I am not even sure it would be able to make some of the turns to get into the city bus. So. We were wondering about simply changing our plan.

Then Saturday morning we had to traverse a very crowded corner. There were masses of people lined up to get on buses and there were three or four people hired by the Toronto Transit Commission (TTC) to get people smoothly on and smoothly off. I could easily identify the supervisor there and made my way over to him. I asked him if the WheelTrans buses were part of the fleet that shuttled people back and forth. He said, quickly and without question, 'Certainly, I'll call you one now.' I stopped him and told him that we were planning on travel on Sunday and it was good to know we still could. He assured me that the TTC would get me there jokingly reminding me that it was "the better way."

As it turned out our Sunday did not include taking the bus to the square. We found a movie we wanted to see only a few blocks from us and we decided we'd rather do the movie and then pop over to the pub for an hour or two afterwards. Real Sunday stuff. So our plans changed, not because we couldn't do what we'd planned but because we changed our plan. My disability, my transport needs weren't included in that discussion.

I was impressed by whomever, at the TTC, planned it so that disabled riders had an option that fit our mobility needs. It still surprises me, in certain situations, we've been included in their planning. I know that I have been advised by my disabled elders to not fall into the trap of being grateful for what is, or should be, rightfully mine. And I'm not here. (Well, maybe a little, sue me.) But what I'm grateful about is the fact that at those meetings when they planned alternatives, someone said, some one person said, "We need to plan for people with disabilities too."

So whoever you were!

Hip Hip (Ouch) Hurrah.

Saturday, April 05, 2014

Disability in Language

I got thinking about words the other day. I had been sent an article which suggested 38 words from other languages that we really could use in English. I like these kinds of things, here are three of my favourites:

Iktsuarpok (Inuit)
You know that feeling of anticipation when you’re waiting for someone to show up at your house and you keep going outside to see if they’re there yet? This is the word for it.

Kummerspeck (German)
Excess weight gained from emotional overeating. Literally, grief bacon.

Tartle (Scots)
The nearly onomatopoeic word for that panicky hesitation just before you have to introduce someone whose name you can't quite remember.

Grief bacon! What a concept!

From there I thought that there needed to be some words to describe some situations or feelings that people with disabilities experience. Words that apply pretty much only to the disability experience and which, when used, would communicate to others with disabilities, 'yep, we have a communal experience of that thing/emotion/barrier.' It would also allow us to have a vocabulary with which to introduce the non-disabled to the world of those who live with and experience disability.

Here are some situations that I think need words:

1) The experience of really having to pee and you have to wait to get the wheelchair out of the car or bus or subway and you rush to a public washroom. You race by several open stalls headed for the disabled one. It's occupied. You wait and wait and wait and eventually a non-disabled person comes out of the stall.

2) The same as above but as you wait, you are thinking 'some damn non-disabled person is using the stall again,' but then someone with a disability comes out.

Let's get out of the bathroom.

3) The emotion you feel when you see someone park in a disabled parking space, get out of their car, and run over to a store. You check, they don't have a parking badge.

4) The NEED to check if someone has a parking permit.

Let's get away from parking.

5) The feeling you get when you take help, that you don't need, from someone because they really need to help you.

6) The sense of violation you get from being touched in patronizing ways by strangers.

7) 'You're so inspiring,' is something heard often - well this word would express the weird sense you get from being congratulated and help up as a person of awe when you are buying bread or doing something equally ordinary.

8) The assumption that others have that your life must be sad.

9) There should be a word that expresses the recognition, after hours of doing something, that 'oh, right, I have a disability.' It isn't a constant experience - there should be a word for that.

10) There also should be a word for the feeling of exclusion that comes from being with people and yet, even though they are friends or acquaintances, suddenly you have simply been removed from the conversation.

There are obviously many, many more situations, but we can start with these. Could you come up with some suggestions for words that fit these situations ... new words ... make up a word that expresses that unique situation. Or, add situations and put words to them. I'll gather them all together and post it sometime soon.

Please respond in the comment section here so all the words are collected together.

Please pass this to other people with disabilities or family members of those with disabilities. (I didn't do any family words here, figuring you'd have your own unique contributions to make.)