Monday, August 31, 2015

A Different Day

Yesterday I faced a decision. Buskerfest, which is an event that I love, was happening. We weren't able to go on Saturday because we had other things that needed to get done. We'd been away for a few days up at the lake and we had to settle back into home, so there was stuff to do. On Sunday we spoke about going to Buskerfest. I faced a decision.

As much as I love the event, I didn't want to go. It was a hot day, the crowds were out on the street and, in previous years, Buskerfest was almost impossible for me to navigate through. People intent on having "FUN! WOW"can be the most impatient and therefore quick to anger. I didn't want to get into a situation that would simply be unpleasant all the way around. There are days that I'm really up to the challenge and the people and the mood of the crowd - and there are days I'm not.

I didn't want to go.

I know Joe enjoys Buskerfest too and I didn't want to take that away from him, because even though he could go without me, I knew he probably wouldn't. I bit the bullet and told Joe that I just didn't feel up to manoeuvring my chair through the crowds. Joe, being Joe, understood and we planned for a very different, much quieter time out.

Throughout the day though, I had to stifle my concerns about how disability affects not my life, but Joe's. I try as much as possible to do all the things that I did before, even if I do them differently. But, I can't always. I CAN do Buskerfest but I have to be up for it, I have to be in the right frame of mind, I have to be feeling really confident in my chair. If any of those things aren't there, I can't. Or. Maybe I won't.

We had a nice day. I'm sure we did. We talked and we laughed and we had a wonderful veggie hot dog from a vendor a few blocks away. We sat in the shade to eat our dogs and people watch. We prepared for the girls coming down for the week to go to summer camp. We felt the sun on our backs as we walked home - something which hasn't happened often this summer in Toronto.

So we didn't go to Buskerfest.

... this year.

Sunday, August 30, 2015

His Voice, Another's Words

Photo Description: Handwritten words in capital letters reading: Tomorrow you'll have to live with the things you said.
I understand the difference between coincidence and causation, I do. Even so, it's hard, sometimes, not to jump from one to the other. I'll admit, in this instance, I did.

We were on a brief vacation and though the weather was unseasonably cold the whole time, we had a good time. One day we were out walking with Ruby and Sadie, heading over the the museum, when we walked by a car filled to the brim with children and noise and chaos. Suddenly something smashed to the ground and an angry father appeared out of nowhere. "You stupid, stupid boy!!! You can't do anything right!!" Tears flowed silently down the boys face. I felt Sadie's hand slip into my own, it seemed that she had been frightened by the man's voice and felt his anger reverberate through the air. I too felt the narrow timbers that hold up my self esteem tremble as words, not aimed at me, nonetheless echoed within.

They were gone.

Car and all.

When we walked back.

Today Joe and I were headed down to do our grocery shopping. We like to go early so that the store isn't packed and the streets are quiet. We walked by a young man, sitting on the pavement where he'd slept the night before. His head was down and his voice a mumble, his face was hidden by the brim of a baseball cap, tattoos of red dragons chased each other around one leg. Just as we passed by the mumbles got louder. A block away, his voice exploded into the air. It was an angry voice, a harsh and hateful voice, his voice, saying another's words, "YOU STUPID, STUPID BOY!!!! YOU'LL BE NOTHING. NOTHING! NOTHING!!" Silence. Then. A sob.

I had change in my pocket on the way back.

But he was gone.

As if he'd become ... nothing.



Saturday, August 29, 2015

Howdy Sailor

We were visiting the Grace and Speed Muskoka Boat Museum with the kids and wandering around looking at the exhibits. They have a newly installed 'kids zone' where the girls had had a wonderful time on a flight simulator for a small plane, working on a water table the demonstrated how locks work, and putting on a puppet show where the plot was thin until the tiger attacked the cow and ... well ... there was blood.

We came upon an 'officer' welcoming people aboard a replica of a steamship. He was a friendly looking sort:

Photo description: Joe with his arm around a life sized cut out of a sea faring captain.
I immediately thought of a fun picture to take and I got Joe over to the cut out and had him put his arm around the captain's shoulders. He did. Then looking to see that no one was around, I asked him to give the fellow a kiss on the cheek. Just as he was about to do this another couple came into the area, Ruby and Sadie were inside the replica watching a short film. I quickly said to Joe, "Wait, wait," and indicated that others were around.

Joe looked at me, quizzically, and said, "Who cares?"

He was right. I still have what I call 'closet hangover' where I worry too much about how others may respond to our relationship. We were there having fun. The place is designed to have fun. I'm sure the cardboard fellow has been kissed any number of times.

But never so well.

Photo Description: Joe kissing cardboard cut out of a sailor man.

Friday, August 28, 2015

Last Day

While there is the weekend yet to go, today is the last day of our vacation. We've been away since Monday on our annual trip up to Muskoka. This was the first year of many that the weather's not been great. It's been grey and cold and damp the whole time. We managed to fit everything in; the trip to Santa's village, the annual night out to Boston Pizza, the scavenger hunt, but we did these with an eye to the sky the entire time. Rain threatened every day and we became masters at getting out and staying dry.

A big part of being here is strolling the boardwalk around the lake. It's a beautiful walk with places that are perfect to stop, with the kids, and look for wildlife and be amazed by the nature around us. One spot is a small bridge, very small bridge, where the girls can stand on tippy toes or crouch down to look through the slats, and count ducks or heron or beaver. This year beautiful lilies are blooming amongst the pads.

I love these walks. There is something about that walk that seems to relax everyone who makes it. Since the get go, it's been a welcoming place. Everyone greets everyone else. Either a nod of the head or, more commonly, a hello and a few words of conversation. It just feels so nice. Everyone acknowledging everyone. Those with dogs are stopped often and dogs, when permission has been given, get lavish attention which they revel in.

Me, I love the fact that, on these walks, I'm spoken to, equally and inclusively, with the rest of my family. The chatter flows naturally and people seem to both acknowledge and forget my differences at the same time. I like this.

I will miss this.

When I get home.

I will miss the sense of being fully human, fully different, when we are out. I will miss having time and space where I feel safe and welcome all at the same time.

I say we come up here for the kids, but I realize, that's not completely true.

Thursday, August 27, 2015

OMG put to good use

I was following the natural flow of people as we all got off the elevator. Joe and I always get off last when the small space is crowded so there were several people ahead of me, all going towards the lobby and outside. The flowing line passed by a woman, with a walker, slowly walking on our right. As we neared the lobby a woman and her friend stopped to chat, interrupting the flow and suddenly blocking me as they stood right in my way.

They saw me and indicated to the woman with the walker to get out of the way. She wasn't in the way, I was nearly by her. THEY were in the way. When the woman with the walker didn't immediately respond, one of them reached forward, past me, and grabbed the sleeve of her coat pulling it, again indicating the she was in the way. She now noticed, saw me, and moved a quarter inch to the right, she was right by the wall, she had no room to manoeuvre but she tried anyway.

The two women looked at me, apologizing for the other woman's behaviour, and then headed out. Joe was right behind me. We got out and I was fuming. I swung my chair around and said to Joe, with the loudness that anger gives voices, "Did you see that? Did you see that?" The two women who had blocked my path stopped at their car, looking back at me, questions in their eyes. They had no idea why I was upset.

"There is the assumption, always the assumption, that the disabled person is in the way. IN THE WAY|!!! That poor woman with a walker was made to feel as if she was the problem, that she was in the way. I know exactly, EXACTLY how she feels. Those two women," who were still listening, "stepped into the flow of traffic, expected everyone to move for them, never thinking that maybe it was they who were creating the problem. No they identified a disabled woman who WASN'T IN THE WAY as the problem. They TOUCHED| her, PULLED AT HER, made her the problem. What the hell is wrong with non-disabled people anyways. Why do they assume all space is theirs and any we disabled people take up is somehow STOLEN FROM THEM?"

Somewhere in that rant they got in their car. But they didn't drive away. They sat there talking animatedly with each other.

I don't know what they said to each other.

I probably don't want to know.

But I hope it was anything that follows first realization and then the words, "OH MY GOD ..."

Wednesday, August 26, 2015

Fred and Me

Photo Description: Fred Flintstone holding a steaming foot after he'd used as brakes for his car.
It was colder than we expected it to be. The skies threatened rain. But we were undeterred, we headed off to  Santa's Village for our annual pilgrimage. We've been going since the Ruby was a toddler and Sadie a babe in arms. We got there and found that there were fewer people than in previous years, kept away by the cold I imagine, and we and the other families there had the run of the place. We started with the girls taking 16 rides on the roller coaster in a row. They'd get off, get in the short line up, and go again and again. It's wonderful seeing kids so happy.

I love going there for a couple of reasons. First, and most importantly, it's an amazing place to take kids. The admission pays for the rides so there's no fuss, no line ups to buy tickets, no hassle with keeping track of or counting out payment once inside. Second, it's a lovely place for adults. It's like taking a stroll through a beautiful park while the kids burn up energy darting from place to place.

We crossed over to Elves Island and found that they'd installed a new climbing devise and Ruby and Sadie were braving it. We watched as they traversed various challenges ten feet up in the air. They were completely absorbed. And that's when the rain finally began to fall. This was our last stop in the park anyway so we were about to head back to the van. We spoke to Mike and said that we'd head back and get in the van, as it takes time, and he could follow with the girls once they'd done their adventure.

At the gift store there is a longish ramp down to the walkway out. I've done this every year, no problem. But this year, I didn't take into the equation that the ramp might be slippery. I headed down as I usually did, and about half way down, I lost control of the chair, it tipped forward off it's back wheels, and I began to slide. Panic took over and I shot my leg out, being tipped over I could easily reach the ground with my foot. I Fred Flinstoned the chair using my foot as a break. Now, I don't wear shoes, only socks, so I could feel every bump on the ramp, Pain shot through my body but I kept my foot there until it had slowed the slide and my chair fell back into proper position.

When I was at a stop, Joe rushed up to me, having watched all this, which took only seconds to happen. I told him my foot was screaming with pain. The friction between my sock and the ramp must have been hot because steam was rising like from a bonfire from my foot. My sock had been worn through and my toes were peeking out trying to figure out what just happened.

Once back in the van and transferred into my manual chair, which I use for riding in, Joe took a good look and I manage to loose a sock but sustain no injury to my foot. Just then the family arrived back at the van and it filled with stories of the day. I listened, glad to hear the chatter and the laughter and the excitement of discussing what comes next.

Me, I was just pleased to be reminded that in an emergency, even with panic, I still can rely on my wits and my body to help me through. My feet may not walk much, but I can put the brakes on when necessary.

Tuesday, August 25, 2015

The Cancellation

Photo Description: A flock of birds forming a heart springing from a woman's hands.
Sometimes my rides to work are very, very, very early. When a morning person uses the word early, they mean it. When I'm picked up somewhere after 5:30 I know that I'll be sharing part of my ride with a wonderful woman, a delight to chat with, who goes to the gym on a near daily basis. She uses a scooter and talks very frankly about her experiences as a woman with a disability, as a scooter user and as someone with a serious and complicated and life threatening illness. She has fought hard to have the life she has, she has lived longer than anyone ever said she would and she bridles as the idea that it's 'inspirational' to want to live and to want to live well.

I like her.

This morning when I was on my way to work, early, I asked the driver if we were going to pick her up next. He told me that she was indeed on the route and would be picked up next. I leaned back in my chair and enjoyed the ride. I had a story all lined up to tell her, and a question I wanted to ask her. I like the moments shared with others who have a disability and who consider, like I do, that the disability community is a rich resource and who are proud to be part of it.

About ten minutes before the turnoff from the freeway towards her place the driver announced, "I'll be taking you straight to work. The next pick up has been cancelled." I thanked him for letting me know but ...

... my heart dropped out of my chest.

Was she OK?

She's never cancelled before. I didn't want immediately to go to 'health' as a reason because I hate when people do that to me. But then, I don't have the same kind of medical issues, she shared with me quite openly about her battles for good health and against disease. I wondered if she was battling now.

I didn't know what to do.

We have never shared phone numbers.

We have only ever shared rides.

It's none of my business. Except for the fact that 'Mankind is my business," to paraphrase Dickens. I care about her. I wanted her to know what she would never know, that I was on the bus. That I was thinking about her. That I thought she was a wonderful woman. That I enjoyed every minute of our rides together. That I wanted more rides with her. That I want her to win and win and win her battles for health like she's won and won and won.

I wanted her to know that she enters a space and brings warmth and light and welcome.

I wanted her to know that on a dark morning ride, someone was praying for her.


And hoping she didn't mind.

Monday, August 24, 2015

The Kiss

Photo Description: Two men kissing in a photo booth in the 1950's.
I remember, many years ago, sitting in a bar with a group of people I knew from work. The mood was tense. Our beer sat on the table slowly going stale. None of us were in the mood for drinking. We were here because none of us wanted to be alone. We all worked for the same human service agency, we all had a passion and life vision to work with people with intellectual disabilities, but we were all, at that moment, reconsidering who we were, where we were and what our future might hold. Two of our number had been fired that morning. Called in, accused, fired. The union didn't care. In negotiations the year before it had bargained away the demand that would have made sexual orientation a prohibited grounds for dismissal. We were, utterly alone. All of us terrified that we might be next.

They were dark times.

It might be difficult to imagine this now. For those who didn't live through it, it may sound almost unreal. For those who didn't live through it, it may be difficult to imagine what it was like to speak without pronouns, to have to lie to live, to have the magical ability to be amongst your co-workers while being completely apart from them. To listen to their truths and respond with lies or silence.

They were dark times.

Last week I ran into a woman with an intellectual disability that I hadn't seen for a long time. Since the dark years, in fact. She still lived with the agency I worked for back then. An agency  that would now never think of firing or, better, not hiring, someone who was LGB. (I've left the T off because I'm not so sure that Transgender Rights have kept pace. There is so much yet to be done. Still so much darkness.) I approached her to say, "Hello." It took her only a second to recognize me. I'm fatter, balder and in a wheelchair so I was surprised she recognized me at all."

"DAvid," she said. She had always put such emphasis on the first portion of my name. We talked a bit and she caught me up with her life. She introduced me to her support worker, a nice looking young man of about 20. He was very good as support, he stood aside while we talked and only entered in when she asked for his help in remembering something. He was a 'support' worker. Then I asked what they were doing there. As I came by it seemed like they were waiting.

Her support worker spoke up, "It's my fault, I forgot my keys at home and I'm waiting for them to be delivered to me." Just as he finished speaking another young man, of about the same age, showed up. He shyly passed the keys to the support worker, leaned over, gave him a quick, affectionate peck on the lips, and waved goodbye as he left. I said to the blushing support worker, "husband or boyfriend." He laughed and said, "Fiance."

The woman I knew said, "I can't wait for the wedding, I'm giving one of the toasts!" She and I talked for a moment more. I wished her well. I said goodbye to the support worker and congratulated him and wished him well on his wedding.

It was simply nice.

I happened near noon.

On a Saturday.

In the open.

In the light.

I left thinking about the two women who had been fired. The one's that were the cause of us gathering in the bar. The one's who had been invited but did not come that evening. The one's who had had their careers cut short, their lives battered by the trauma of being targets of hatred and bigotry. I never heard from them again. Don't know where they are.

But I hope, where ever they are, they are in the light.

Being kissed.

Sunday, August 23, 2015

My Mouth and I Get Tea for Two

Photo Description: Tea being poured from a glass pot into a glass cup.
Odd encounters come unexpectedly. They catch you off guard. Let's face it, for disabled people, and I imagine but do not know that it's the same for anyone considered different, it's gets harder and harder to be caught unaware. Silly comments, inappropriate intrusions, and downright bigoted interactions aren't, like, um, rare. But, even so, I was caught off guard.

Joe and I were out for breakfast. He was over at the 'order eggs and hashbrowns' place and I'd gone over to a separate 'order tea and coffee' place. I waited in line up. Money crushed in my hand, like an excited 4 year old waiting to pay. I ordered our usual. Yep, 'usual' we come here often. I ordered one large cup of black tea and one large cup of green tea.

The woman brought them to me individually and I asked her if she could put them in a tray so that I could easily carry them. She did, cheerfully, and said, "So you like having both kinds of tea." I was confused, "No, I drink the green tea the other tea is for my husband." "Oh," she said, "I thought you were on your own." She thought I was alone. I buy two freaking teas and she thinks I'm alone, her assumption is that someone like me is alone. Evidence for two becomes a pity party for one. I practise my 'happy place' imagery while my calm yourself breathing strategy isn't working my breath comes ragged like I about to give birth to twins.

She didn't blink at the word 'husband' score one for her, but she said, "He lets you get tea by yourself? You could drop it!" She shook her head. SHOOK HER HEAD!! What kind of man must I have married that he'd let me, all on my own, without his ever present help, carry two teas on a tray across a room? She continues sarcastically, "Must be quite a guy you've got there."

One the teas were snugly in their tray, I was backing up in my power wheelchair, I stopped at her 'my guy' statement. "Yeah, in fact, after a blistering, passionate Friday night, I can't walk for days!!"

I couldn't read her look. Shock? Horror? Envy?

I didn't care.

Saturday, August 22, 2015

Welcome Hands

When I am about to receive service from someone, as a person with a disability, for issues regarding my disability, I am filled with anxiety. I do not trust, and I don't think I'm alone in this, that the person, who will be randomly selected to serve me from the cadre of people on shift that day, will be:

1) happy in their job
2) free of prejudice against disabled people
3) free of bigotry against fat people
4) have a core value of kindness
5) able to understand my fear and how to handle it

Some of that list may surprise you. "What? Someone working with people with disabilities who is prejudiced against people with disabilities? How can that be?" I assure you it can be and I'll leave you to speculate how that comes to be as it's a question I wonder often, in my many capacities around the subject of disability.

The other day I received service from someone. I felt the anxiety. Didn't know how I'd be treated, didn't know if I'd be respected, didn't know if I'd come out the other end battered or bettered. But the service I got was simple, quietly reassuring, gentle and even a bit playful. No one thing was exceptional in and of itself, but the service was offered in a way which had me feeling relaxed only a few minutes in.

My brain said: I'm safe here.
My heart said: I'm safe here.
My body said: I'm safe here.

I left struggling to figure out exactly what "behaviours" were done. I couldn't really find any. I've received this service before, and will again, and there wasn't anything really unique this time.

Then I thought of the "attitude" with which I was served and then it was easier to figure out there was an attitude of:

1) welcome
2) competence
3) warmth
4) shared humanity
5) understanding of my sense of vulnerability

These attitudes shaded the work that was done. It filled the tone of voice, it put a cushion of careful gentleness between those fingers and my body, it communicated reassurance through demonstrated competency.

Two hands can touch, in the same way, doing the same thing, but the touch can be received in very different ways. Both hands doing the same job, but one pair of hands can leave me feeling supported, the other pair of hands can leave me feeling judged.

I was lucky.

I received wonderful support - from someone for whom welcome was an art.

Friday, August 21, 2015

The Gift

When I got to work this morning there was a nice little present for me. Someone had written in to subscribe to Service, Support and Success: The Direct Support Workers Newsletter, and had attached to the subscription request a short note as people often do. She told me that she had heard me lecture many, many years ago and was shocked, at the time, at what I said about sexuality, relationships and the right to love in relation to people with intellectual disabilities.

Her background, she described, was very conservative and the things I said shocked her both because of the subject of sexuality and frankness with which it was spoken of but also because of the idea embedded in the presentation that people with intellectual disabilities had a right to, and would inevitably grow to adulthood. At the time she brushed off my presentation, saw me as another 'all talk' presenter.

Part of the reason for her reaction was because she and her husband had had a young son with intellectual disabilities and as they struggled to teach him some basic skills, they couldn't imagine him in a relationship, living on his own, being a fully contributing adult. My talk had shaken her up but not enough to change her views.

I didn't need to do that.

Her son did.

She said that he did eventually and inevitably grow into adulthood and he did have expectations of living a large life, much larger than she and her husband ever imagined. She said that today, he's going to ask his girlfriend to marry him. She is excited for him, her husband, she says with a couple of lols can't talk about it without crying.

I've written her back and asked her to let me know if her son's girlfriend says, "Yes."

I really want to know.

The email made me realize that those of us who provide education and training regarding people with intellectual disabilities need to realize that the real teachers, the real change-makers are the courageous and bold and strong people with intellectual disabilities who will live the life they want and will make their way in the world.

At the very end of her email she said, "If you want to write about this on your blog, please do." People know me so well.

Thursday, August 20, 2015

The Toy

It's been a hard few days. Remember when I say that, as a human being I have hard days like everyone else, not all my hard days relate to or have anything to do with my disability. The fact is some times life is more difficult than at other times. I am desperately looking forward to the weekend and to a few days off work.

Yesterday I was waiting for the bus to come. I go in to the office early so I catch the bus even earlier. I'm used to the early hours, I am an early morning person, but, even so, I was feeling hard done by. This, for me, is a natural reaction to having a bad patch.

When the bus pulled into the driveway, I sat up in my chair, got my feet on the pedals and was fully in 'start' position for when the bus stopped. The driver got out, greeted me, opened the door and set down the ramp.

In a sudden fit of whimsy, I pushed off.

The is a small landing in front of the building, there's a bench, two big pots of flowers and a place where smokers can put their butts. The landing is flat but when you push off you there is a long slow drop, almost like a natural ramp. I cleared the lip and let myself sail down towards the bus.

I felt like a kid on a slide.

It would have been appropriate for me to have gone WEEEEEEEEE! if I'd been, say, 60 years younger.

The driver, watching me, smiled. She saw that I was just having a moment of fun on the way over to the bus.

When on the bus, I recognized that I felt better. That the moment of wheeled playfulness helped.

Sometimes being in a wheelchair has a side benefit, if there's a hill, or a ramp anywhere in sight, you've got a toy under your butt!

I have to remember that next time I have a rough couple of days.

Wednesday, August 19, 2015

The D Games!

Today Joe and I had to marshal all our energy, all our expertise and enter into, sound the trumpet, "Ultimate Sports: The D Games!" Yes, we woke to the sound of birds chirping and sun creeping through the curtains. This was not typical, panic set in, "Joe, what time is it," he answered, "it's o'shitno o'clock." We'd slept in. We never do this. It takes a few seconds, because doing math upon first waking up takes time patience and a painkiller. We had 25 minutes until I was to be on the bus.

We've got this down pat, it takes us 1 hour and 12 minutes and 47 second for us to be fully ready to head down to the bus. Our time was short. Let the Disability Games begin. We had to pare away everything that we could from our routines. Joe had to shorten the tasks he needed to do, I needed to use less help than I normally do. Even with that we know something: Disability. Takes. Time.

The clock was ticking.

We had no time.

In a sudden shot of inspiration I figured a way, by using my reacher and a clip from my suspenders (Braces in the UK) to do something I previously couldn't do without help. OK. Done. I stumble from the bedroom fully clothed.

We've got to be out the door in less than five.

Lunch and breakfast thrown in bag.

I decorate myself with jewelry setting a new personal best.

We are out the door.

5 minutes to go before the bus leaves.

I push myself down the hall as Joe gets the door locked.

We are are on the elevator.

3 minutes to go before the bus leaves.

Bus is in driveway, ramp down.

I push to the door held open by Joe.

I push through the door held open by the driver.

I'm in.

One minute to spare.

Only 24 minutes before I was in bed sleeping soundly. Now here I am on the bus, smelling fresh, wearing clean clothing and a slightly bewildered face.

Yep, we won the Disability Games - now wears my medal?

Tuesday, August 18, 2015

An Elegant Ramp

We went shopping yesterday in a store that, only a short while ago, I would not shop in. It's kind of a high end store, the kind where we feel that our sole job is to bring down the tone of the place, where there was something quite specific that we wanted to pick up. I had planned on ordering it on-line from a different retailer, because the store in question was back door, garbage chute, accessible. I really, really, really, don't like going in where the garbage goes out, so, I don't.

I was reminded to order on-line when we were walking by the store. I noticed, and made a joke of, the fact that they had an accessible door opener, with the little wheelchair dude painted on it, set beside the front door. I knew, from past experience, that once you were in, you were greeted by several steps up and into the store. I said to Joe, "Look, accessible entrance to an inaccessible space." Joe, however, said, "Maybe they've become accessible, let's take a look."

He pushed the button, the door opened we went in and were greeted with a ramp. A lovely beautiful ramp. An elegant ramp, even. So up we went into the store, we found what we were looking for, we got in line, and made the purchase. When buying the item I spoke to the clerk and said that they were getting our business and our money because they had become fully accessible. She started to talk about the back entrance, in an attempt to say they were always accessible, and I said, before she finished, "So disabled people not being allowed through the front door and being required to go in the back door is acceptable?"

"Well, if you look at it that way," she said, a bit miffed.

"There isn't really another way to look at it," I said, because there isn't.

But I didn't want this to be a negative encounter. I put my smile back on and said, "I just wanted to make sure that you know and, if you wouldn't mind passing the message on to your supervisor, everyone knows that I appreciate the ramp and because of the ramp, I'll be shopping here more frequently. Accessibility, real accessibility makes a difference.

She nodded.


"You're right, back door isn't good enough."

Another pause.

"We had lots and lots of complaints. I didn't understand why until now."

"Thanks," I said, picking up my purchase.

Hooray! Slowly but steadily my area of town is becoming more accessible. Front door accessible. I made one of those complaints, but clearly others did too. Others who, like me, want equal access. Front door access. Sometimes I think that writing a letter, or making a complaint, will do nothing. And I'm probably right. However, when we all do, when we realize that our letter, our complaint, our voice will be added to others, our chances of being heard and making change increases.

We have a lovely ramp.

Thank you to the invisible but not silent minority of the disability community.

Monday, August 17, 2015

Commenting on Comments

Some of you will have noticed that this blog has been receiving a number of comments recently asking me to write about a particular topic. Those comments have a vaguely threatening tone and the writer seems purposely unwilling to recognize that "Rolling Around in My Head" is a personal blog. Demands are being made for me to write about issues that, while it might be different some day, have not arisen in such a way that makes the topic relevant to a personal blog.

I am very careful with moderating this blog. I started it because someone made serious threats towards me and said that they were going to dominate my blog through comments. I turned on moderation and the attack never happened. I left it on because I was able to filter out a lot of spam which, I think, makes reading the comments a much more pleasant task.

Even so I have very seldomly ever refused a comment, even those wishing to hijack the conversation and force me to write material I had no intention of writing. I recieved two comments in the past few days that I couldn't figure out of they were spam or they were actual comments. They involved telling me that someone had claimed I was involved in some kind of devious attack on them, that I was coordinating it, even though the acknowledge I'd only spoken to them once. I read the name, didn't recognize it at all, and after much mulling I deleted them. They have not reappeared.

As a result of all this though, I've decided that I need to update my comment policy. It now reads:

Thank you for your comment. Disagreement with the blog post and heated debate about issues raised are welcome. However, comments which personally attack or bully another or comments which are not relevant to the blog post or the blog theme may be removed.

There have been many, very many, times when readers have written to say essentially, "I know this isn't about your post today but I wondered if you'd seen or heard about ..." Then they'd share something related to disability or disability awareness. Those, of course, are still welcome because they reflect the overall theme of the blog.

I don't like becoming stricter about the comment section, but I know that the comments have been upsetting to a number of readers, I want to acknowledge their concerns, and, frankly, the comments have been disturbing for me to read as well.

So please note the new comment policy. It goes into effect immediately.

Sunday, August 16, 2015

Golden Girls

We noticed others notice. Several people on the other side of Yonge Street had stopped, a couple were pointing, several were waving. It took a few minutes for them to come into view and when they did, they generated the same kind of excitement around them. They were four women, wearing Team Brazil tee-shirts, all pushing very sporty wheelchairs. The stretch of the street they were on had them pushing uphill, which they all did without even a hint of effort.

Brazil has owned the Pan American Games here in Toronto this year. They took an early lead in the medal count and then never looked back. Canada came in a strong but distant second. Next year Brazil hosts the Olympic games and they have, understandably, poured money, effort and time, into training athletes for those games. It showed here. They were amazing to watch.

I don't know what sport these women played, I don't know if they played as part of a team or if they competed on an individual by individual basis, it didn't matter. What mattered was that they were here for the games, their country did incredibly well, and they were our guests in a city and a country we love. As they went by, I gave them a thumbs up, and cheered their country's performance. They didn't stop, which I didn't expect them to, but they all smiled and acknowledged the recognition.

It was awesome. I felt, even though we are people living in different parts of the world and clearly have different experiences with that world, that they represent something powerful about the disability experience. I'm not suggesting the tired 'inspiration' theme, I'm suggesting their demonstration that their mastery of skill and athleticism is a result of the increasing range of choices available to people with disabilities.

Later we saw them again. This time I was following them into the mall where we do our grocery shopping. Where I turned to go to the elevator to take me down, they turned to go into a clothing store on the main level. It was funny because, though the doors have auto openers that hope, wondrously, both doors, the two sets of double doors were held open, each by one man. Each man grinning and congratulating them as they went by. I followed on their heels, I said to the first guy, "I'm clearly not the athletic type", he laughed.

Downstairs I heard several people talking about them. Now what I heard pleased me but may offend others. They were often described as "disabled athletes," and they were described that way in respectful, even awe-full, tones of voice. I don't ascribe to the "see the person not the disability" kind of crap. I prefer the "see the disability and the person" point of view. I dearly hope no one corrected the people who were excitedly talking about what they saw.

The word 'disabled' in conjunction to 'athelete' is what allows perceptions to be challenged and puts positive mental pictures into people's heads about what disability means and what it doesn't mean. It was great, no it was freaking fantastic, to hear conversation, in a public place, amongst excited strangers about disability in a positive framework. For a second it pushed out that horrid, outrageous, attitude that, "I'd rather be dead than disabled." For a second it made disability something that was part of a larger story, a story that wasn't about tragedy, a story that wasn't about charity, a story that wasn't about pity.

Those four women, I don't know if they won gold, chances are at least one of them did, but if not ... take a gold star from me. You gave me an awesome moment, in public, as a disabled man.

Saturday, August 15, 2015

A Dangerous Man

He stopped and chatted with us as we arrived home from work. I was in my wheelchair waiting for Joe to get the foot rests, and he was just heading out. I don't know how to 'be' in conversation with him. So, I'm "friendly cool". I don't mean friendly in a cool way, but friendly in a frosty way.

You see for several years when we ran into this fellow on the elevator or in the lobby, he'd chat with Joe and ignore me. This happens. I tried to enter into a few brief neighbourly conversations over that time and was firmly shut out. Even when Joe tried, as he did, to involve me, it didn't happen.

Then something happened. I was in the lobby, as it was winter, waiting for the bus in the morning. The elevator door opened and he came out. He greeted Joe, who was sitting on the couch beside me, ignoring me completely. I had stopped saying hello to him as he never, ever returned on. I thought I couldn't become uninvisible and I'd stopped trying.

That morning he asked Joe what we were doing there so early, Joe answered, "Waiting for the bus to take Dave to work." That one sentence change everything. He turned to me, which I was unprepared for, and said, "What do you do for work?" I was so startled to be asked I answered, something like, "I'm the Director of clinical services for a large service organization."

His face showed shock. "I thought you were on benefits," he said.

I said, "No, I've never been on benefits of any kind."

Then he started talking to me. Then I started practising my "friendly cool like frosty" way. I really didn't want to engage him. I thought about it and I didn't want to have a confrontation with him either. Maybe I should but we live in the same building. There are already people hostile to wheelchair users here, I want my home to be a stress free as possible. I don't need to be everyone's educator.

Here's the issue for me. As soon as he knew about my work, his sense of my social value changed. I was now worthy of his attention. I've always been very wary of the idea that social role should have any impact on value at all. Aren't people simply valuable because they are people? Do we really think that a human being becomes more and more valuable as they get promotion after promotion at work? My father worked as a miner. He worked hard. He worked underground. When he shook your hand it would feel like you were touching the rock he mined. Hard, strong, hands. If your father was a doctor,  would your father be more valuable, as a person, than mine? I know that they would get differing amounts of pay and differing amounts of social respect ... but I'm not talking about that ... I'm talking about value as a human being.

Buying into the idea that social role has a place in determining the value of a person is dangerous. It leads to, quite literally, death. Murdering this child is a travesty, murdering that child is charity. Assisted suicide for this person, suicide prevention work for that one.

Every time he talks to me, this man who now sees me as a fully human and fully equal person - he reminds me that others who would value the value of others are, perhaps, the most dangerous people to me, and I pray God they never, again, have power.

Friday, August 14, 2015

Forest Grump

A friend of mine was describing a vacation she was about to take. Her face went all smiley as she described going to a place where there's no wifi, no television, no cell phone service. She will be completely unplugged for two whole weeks. They are planning on hiking and boating and exploring the forest around the cabin they've rented. I told her that it sounded wonderful.

I wasn't lying.

It sounded wonderful - for her.

I had no intention of bring a disability perspective to the conversation because, it really wasn't needed. This was about her and her vacation, I could easily say, that it sounded wonderful because her voice told me it was wonderful, her smile told me that it was wonderful, they way she relaxed even as she described it told me that it was wonderful. For her.

Then she asked if I could unplug for a couple of weeks.

I said, "No, I couldn't."

"Not even if you were up at a beautiful cabin in the woods and on a lake?"

"No," I said. But I didn't want her to walk away thinking of my answer as being about my inability to 'unplug' ... because, that's not it. I didn't want her to think that I was a real life forest grump. So, I brought disability to the table, "You have to understand that if I rented the same cottage, I'd be stuck in the cottage. I'd not be able to hike, or explore the forest, or go boating. So, what I'd be doing is sitting watching the people I was with go do those things. It would be incredibly isolating for me."

While I get annoyed at people who are constantly on their devises, even when out walking on the street, making hazards of themselves because they aren't paying attention to their surroundings, you will not hear me go on and on about the evils and perils of the Internet. In fact, for me, the Internet holds many blessings. Beyond seeing cute inspirational quotes decorated by kittens and puppies, of course. The Internet reduces my isolation as a disabled person. It gives me quick and ready access to the disability community and allows me conversations that I would not be able to have in the real world.

I am surrounded by non-disabled people, for the most part. I am also surrounded by straight people for the most part. Now, I'm good with both those things, but sometimes I feel a bit lonely. But when I'm feeling like I really need to have gay conversations with gay people about subjects understood by lgbt people, I hop in my chair and go to our friendly neighbourhood accessible gay bar. However, there isn't such a thing for me when it comes to the disability community - except here, on the Internet.

I don't choose, or haven't yet chosen, to unplug from the support and the conversations and the humour and the insight and the warmth of the disability community, in all its forms here on line. Even when I stopped blogging for a month, I still connected through Facebook and through various other means.

I do not wish to be alone in a forest.

Or, really, anywhere.

Thursday, August 13, 2015

Letting Forgiveness Happen

I've ridden with her a few times. She's a little older than me, gets picked up soon after I am, which is very early in the morning, and we chat for the whole ride. I get off first and wish her well on her morning trip to Tim Horton's. We talk mostly about the stuff of being disabled, she has different frustrations than I do, of course, as she lives with a different disability, but the over-arching theme of our chats is how prejudice is made manifest in physical barriers. Neither of us think that architectural exclusion is all that accidental.

When she got on the bus the other day and told me, after I'd asked, that she was going to Tim's again, I wondered why anyone would get up that early to go a long way for coffee and donuts. I also noticed, for the first time, that we went by several Tim's shops on the way to where she goes. I asked her, "Why do you go to that particular Tim's? She told me that it's the transfer point between the Toronto transit system and the Vaughn transit. "Ooooooh," I said and then admitted that I'd wondered at how such a slim person could chow down on so many donuts during the week. We both laughed.

I told her that I'd never used the Vaughn system and asked how difficult it was to book connecting rides. She said, "It's very easy. My brother does it for me. I can do it myself, but I let him do it. It's important to him to do it, so, I just tell him where I'm going and he sets it up."

"Why is it so important for him to book the rides?" I asked.

There was a pause.

"When we were younger, he was very ashamed of me. He let me know it. He let everyone know it. He bullied me and teased me through most of my childhood. He was my big brother and I wanted and needed a big brother but I got a bully instead. For the longest time I hated him."

She paused again. The story wasn't easy for her to tell. I tried to give her the option to stop but she said that she wanted to finish.

"He came to my place one Christmas bringing gifts from the family. I could see he was upset. He broke down and told me that his wife had left him and she'd taken his children. He ended up staying at my place for a long time talking. He realized that he'd been a bully his whole life. First me. Then his wife and kids."

"After that, he changed towards me. He always wanted to help me and was frustrated that I no longer needed his help. One day I asked him if he could book a trip for me, an easy one, to my doctor's office downtown. That was it, from that day on he has booked all my trips. I don't need him to, but I let him. It matters a lot to him."

"I think that's his way of saying, 'I'm sorry," she continued, "my letting him is my way of saying, 'I forgive you.'"

"Forgiveness matters," I said.

She said, "So does repentance."

Wednesday, August 12, 2015

Golly Gee Willikers

I know what I'm about to say about her is wrong. I know what I felt when I saw her was also wrong. And though it's wrong, and though I know it's wrong, it didn't stop me from thinking it. And that's the point.

Anyone who has followed my work, or read my book, Just Say Know, will know that I don't like and won't use the term 'vulnerable populations' or ever refer to a specific group of people as 'vulnerable.' I think doing so is kind of a massive linguistic form of 'blaming the victim.' It makes 'something about them' the reason 'something happens to them.' It makes the assumption that a person is, and always will be, vulnerable due to a state of being. The only response to the 'status' of ' one of the vulnerable' is the 'status' of 'the protected.' The term focuses our attention on what we do to protect the forever, and ever, vulnerability of the other. The term focuses our attention away from the fact that 'we, the protector' are also 'we, the abuser.'

I'm proud of the fact that I was one of the first to write and suggestion that protection increases vulnerability. A person's level of vulnerability does not get established at birth but is created by opportunities for learning skills to stay safe, opportunity to practise and use voice, and, of course, for active permission to be non-compliant, even forcefully so. We the abusers protectors keep our victims charges ignorant and docile through our training and our traditions. It's a clever strategy.

Having said all that, when I saw her, she looked so vulnerable. She was 5 or 6 years old, small, thin, frail looking. She had Down Syndrome and her whole demeanour was one of shyness, perhaps even subservience. She was in a tight line up of children waiting for face painting. The line up was long. We had two kids in the line up, a few in front of the frail little girl, and we were told that we had another 30 to 40 minutes to wait.

So that's what we did.

Slowly enough to be torturous, the line moved forward. Just as Ruby was about to be painted, I noticed a brute of a kid stalking the line, she wasn't big, but she had set her body and her face to be intimidating. I became very alert when I saw this kid see the little girl already in the line up, with her arms wrapped all the way round her, holding herself as she waited. Stomping over, she said to the little girl with Down Syndrome, who had been waiting, "Thanks for saving my place," and began to push in to the line up.

Vulnerability, shmulnerability!

"No, NO! I don't know you."

The other girl did not listen and continued to push in. Seeing that her protest didn't work, she turned her body, put her hand up and said, "No!" At this point the other children, who had been aware of the bully but who had not acted, were spurred to action. "Yeah, get to the back of the line!" called out one. "We've been waiting already!!" said another.

The bully ended up at the back of the line, stayed there for a second, and then found her mother and left in tears.

I looked back at the little girl, who looked so frail. I understood something, because she looks frail, because she looks vulnerable, because people will see her that way, because predators and bullies of all kinds will hone in on the perceived vulnerability, she is in extra need of strategies of her own.

It was only later, much later, that I realized something.


Really, really big.

That little girls Mom and Dad, were there, I saw them watching her in the line up just like we were watching Ruby and Sadie. I saw her wave to them, excitedly. I saw them wave back.

When the bully approached, they didn't move in to speak for or to advocate for to to be the voice of their child. They let her handle it. They trusted their teaching and training and they trusted her to be her own advocate and her own voice.

It is never really possible to speak for another person. It is possible, however, to teach someone to speak for themselves.

Even if they don't speak.

Even if they appear vulnerable.

Even if the idea scares the golly gee willikers out of you.

Tuesday, August 11, 2015

The Easy Choicelessness of the Non-Disabled


They are good right?

I know they are.

But there are the 'disability choices' that I have to make. These are, often, the hardest kinds. In the split second before making them, I sometimes envy the easy way the non-disabled live with choicelessness.

I was in the hall yesterday morning. It was Monday. It felt like Monday. My bus pick up time was ridiculously early, at least 20 minutes earlier than normal. This has me in the hallway, up and showered and shaved and dressed, at 5:55 in the morning. In my chair I am making sure that my footrests are firmly attached and that Joe has remembered to put my lunch bag on the back of my chair.

One of my neighbours came out of her apartment. She looked like I felt. She nodded in dim awareness that we were there, turned and trudged down the hallway. Choicelessness. Easy, simple, choicelessness. She's non-disabled, she has no choice but to be non-disabled. She turned and walked down the hallway.

Me, I am realizing as it nears time to push off down the hallway that I have a choice. I can push myself. I can ask to be pushed. Or, thirdly, yes a richness of choices, Joe and I can push together.

My brain wants me to be independent. Every other part of me wants to just be disabled and let Joe push me down the hallway. It's easier and faster.

And aside ... I am often referred to as lazy when I'm in my manual chair pushing myself somewhere. People who walk using the big strong muscles of the legs thinking it's easier, easier, to push a wheelchair. They have no idea how much extra work it takes, how much more effort goes into it. Lazy freaking walkers.

Another aside ... I am almost never called lazy in my power chair. Neither chair is an experience in lazy lounging - one involves the significant work of pushing, the other involves the significant work of driving on narrow sidewalks full of oblivious two-footers. I think that because my power chair is so tall, and I sit tall in it, it's harder for someone to verbally and physically look down on me.

Anyways, back to choices.

I've seen other people with different kinds of disabilities make the same kinds of decisions, the 'will I be disabled today' kind of decision. There is a coffee shop we sometimes stop at which employs people with intellectual disabilities. I was there one morning, just after they opened. A bleary-eyed young woman with Down Syndrome was working the till. I ordered a tea and paid with the only bill I had, a 20. She punched in the numbers, saw the big number representing the change I need to get back. She slyly looked over at a non-disabled co-worker, trying to decide if she should just work up the energy to give me my change or ask for help. She made my change.

I said to her, "I saw what you did there, you almost asked for help." She blushed and laughed, "You saw that?" I said that I had seen it and that I only noticed because sometimes I have to decide to be disabled or not. "My mom still makes my bed," she said and began to laugh, in seconds we were both howling as I understood the implication of her statement.

Yesterday, I made the decision to push myself. As I do most mornings. The mornings where I choose otherwise, I'm not proud of ... but then, what the hell ... it's my choice.

Monday, August 10, 2015

Men. Doors. Children.

Sadie is an interesting kid. She knows her own mind. She makes her own decisions. She will, at all costs, want to do something she's seen done once, on her own,  without help. Discernment is one of her gifts, if she tries something, realizes she can't do it, she will, without hesitation, ask for assistance. But for her, it's really important that she be the one asking. I like this about her.

We left our apartment building and Sadie had determined that she was going to push the grocery cart, carrying all sorts of stuff, down the hallway, down the elevator and out to the car. It was just she and I, the others were going to follow. We both didn't feel like waiting for everyone to be ready, she had her shoes on, I had my power chair amped up Out we went.

When we got to the lobby we found it relatively full. One elevator was on service, another was down, which left only one working. It was miraculous that it came to us empty. We got to the door. Sadie said she would take the cart through first. Sadie is a little girl, she's five years old. She pushed at the door, got it open a bit, an accomplishment because it's heavy, and then she started pulling at the cart. It was half way through. I could see that Sadie was smelling victory.

She was having a good time.

She was not frustrated.

More importantly, she did not ask for help.

I got where Sadie was coming from. I struggled and struggled to learn how to get through that same door in my manual chair. It was important to me to develop this skill. In an emergency, I might really need it. Sadie wasn't thinking about emergencies of course, she was thinking about the "I DID IT ALL BY MYSELF!!" moment.

Glancing over at the small crowd in the lobby waiting for an elevator. Half were watching the elevators slow progress down, the others were watching Sadie. Two women were glaring at me, I saw them, understood what they were thinking and said simply, "She likes to do things on her own."

I should have kept my mouth shut.

My explanation spurred one of them to action, "She needs help, can't you see that!!!"

I did see Sadie and, no she didn't need help, she needed time.

I understood this. Part of my problem with learning how to do those exact same doors was the fact that people wouldn't give me time to do it. People would see me going out the doors, it involves intricate moves, well timed, and they would imagine I was frustrated. They would imagine that they were the solution to a problem that I actually didn't have. When they'd come to help, I'd have to say, "I'm trying to learn to do this on my own." That, by the way, never worked.

When the woman darted towards Sadie, she was almost done, three out of the four tires were out. The door was pushed wide enough for her to now get it out. I rushed towards the woman, got there, blocking her, I said, "Please, please, let her do it on her own. It's important to her." There was no time for me to explain that as a disabled person, I've really learned about help, when it's wanted when it's not. I've learned how unwanted help can hinder learning and damage self esteem. Being disabled gives life lessons just like paying attention can give you life lessons.

She spat at me, angry for a reason I couldn't understand, "I can't believe you would sit on your ass and not help that kid."

I wanted to scream, "I AM HELPING HER, SOMETIMES DOING NOTHING IS THE ONLY HELP SOMEONE WANTS." She leaned over me, actually bringing her body in contact with mine, and pushed at the door. It flew open and Sadie, thank heavens, didn't fall when the door suddenly swung away from her.

She got the cart out.

She looked angrily at the woman but didn't say anything to her, she said to me, teary voiced, "I almost got it out by myself."

"I know sweetie," I said.

Behind me, I heard the woman would had given unwanted help, who had violated my space in a serious way, say to her friend, "Men shouldn't be allowed any where near children."

Later, at the car, Sadie asked, "Why did she say that? You and Joe and Daddy take good care of me."

"I don't know, Sadie, I don't know."

Sunday, August 09, 2015

A Blog For Me: My thoughts on getting home

Getting home late Friday night, well late for us as it was past 10, and getting out of the car to wheel up to our apartment, I had that old familiar feeling. I've been travelling and lecturing for many, many years now. Decades. I remember, once, being taken aside by someone who told me that I was a 'flash in the pan,' the 'flavour of the month' and that my presentations were shallow without much in the way of meaningful content. I still remember that. Funny, now nasty sticks. I've received many, many, powerful bits of positive feedback but, shit sticks.

I never, back then, would have predicted a career that spanned decades and a list of lecture topics that would grow and grow and grow. I never predicted that I would develop and deliver workshops to large groups of people with intellectual disabilities. I never predicted that I would train people with disabilities to train people with disabilities. None of it was planned it all just happened.

I know I've written about this before, I predict I will write about it again, but last night, getting home. Standing outside the car while Joe pulled my chair out of the back seat, unfolded it and rolled it over to me, I felt this kind of intense joy. Intense!! The sight of the chair, the realization that I'd just had a blast presenting for a full day, on stage, in front of an eager audience, the understanding that, I hadn't predicted this either.

Being disabled wasn't on the radar back then.

But then, neither was being married.

Or working as a director in an agency.

None of it was.

I stood there, years ago, as someone insulted me and my trainings and presumed to know what my future was. I allowed them to place fear into my heart about what was to come. They pictured me crashing and burning because I didn't have enough fuel to travel the distance.

And now I look to the future and all I see is distance yet to go ... and I'm grateful. I love doing what I do. I loved it standing up. I love it sitting down. I love it.

People let me do it.

People ask me to do it.

People pay me to do it.

The "flash in the pan," "flavour of the month," me is now wondering why I listened and why I worried. I know shit sticks. But I also know where the soap is. Maybe it's time, I got it out.

Saturday, August 08, 2015

Three Boys

They, they were with their mother. She looked tired. Three boys, all under ten, all coltish and full of boundless energy. They looked like they should be running free in some pasture or playground somewhere, not following their mother through a grocery store.

Me, I was tired. I'd lectured all day in Butler and was stopping to pick up some frozen veggie stuff at the grocery store on the way home. I'd already gone by several families and had kid's heads swivel in complete circles as they watched me pass. I looked frantically around and, predictably, there's never an exorcist when you need one. In three different situations, Joe moved to stand in front of their stares so I could shop in peace.

These boys, however, were very different. The saw me. I saw them see me. They noted my difference. Then they worked very, very, very, very, very, very hard not to stare at me. I could see the effort it took. They knew, because clearly they'd been taught, that staring at people is intrusive, better. One of them, slipping up and having his eyes roam back to me, brilliantly segued into a bright and cheery, "Hi!" And I gave him a less bright and only somewhat cheery "Hi" back. He grinned.

Their effort is to be noted. Kindness takes work. Treating difference respectfully does not come easily or naturally. Each boy's effort was noticeable. I was proud of them. But I was amazed at the parenting they must have received. I was impressed with the desire they clearly had to make the world around them and around me safer. I was heartened by the work they put into controlling their natural inclination to gape at difference.

I wonder if they saw the other kids. The one's who's eyes, at such a young age, had learned to judge and to already weigh the value of others. The giggles and the pointing, obvious gestures of ridicule, forming a pattern that will, one day, form a pattern, a way of seeing others in the world, that will be hard to break.

These boys though. The boys who whipped around their mother's cart, who's flurry of activity was nearly unrestrained, they, they worked  at harnessing their eyes. They worked at engaging their hearts and minds into noticing and then accepting difference as simply, just, difference. Their feet are on a different path.

I saw them again later, gathered around their mother all looking at a book in the seasonal section of the store. They were laughing, all of them, together. And at that moment their mother looked a little less tired and a whole lot loved.

Friday, August 07, 2015

Checking In, Checking Out

Photo description: One large purple bruise and one smaller red one on left arm.

We stopped on our journey down to Butler, PA, where I will be lecturing tomorrow, to shop at the large Premium Outlet mall in Grove City. We had a list of things we wanted to pick up and as luck would have it they were at stores at either end of the huge mall. Because of the Parapan games in Toronto we were unable to rent a wheelchair van so I was using my manual chair. The distances were daunting and I wouldn't have been able to do more than one or two stores without Joe there to help push me and help me get through the doors, none of which have auto door openers.

Even with the long distances, we were having a really nice time. We were lucky in our purchases and managed to find really good deals and stores that weren't too busy. Once done we decided that instead of me going all the way back to the car, Joe would walk back to the car and drive over to pick me up. I spied an empty disabled parking spot right across from where we had been discussing our plans. I suggested I go and wait there and then Joe could pick me up there, it would be better than him stopping on the roadway alongside the sidewalk where we were presently.

Once in place, I wished Joe a good walk and got out my phone to check emails and such. I glanced up just in time to notice a woman, looking at me and  stepping off the sidewalk heading my way. I braced myself. This is almost never a good start to any interaction.

She arrived and asked me, in a whisper like we were speaking secretly, "That man who was pushing you, is he your helper?"

Now I need to ask the entire gay movement to forgive me. I could have clarified that Joe was my husband, but sometimes I feel like I'm different enough without adding another layer to the cake. I said, carefully choosing my words, "He helps me, yes."

She moved closer.

"I saw the bruising on your arm. Are you safe? Are you OK?"

My first reaction was anger. But my second reaction slowed down and stopped the angry response and replaced it with, "Oh, thank you for your concern, I appreciate you checking in with me, these bruises are from a fall on the bus, I really am OK."

"A fall?" she asked not believing me. 

"Yes, it's from my attempts to get up, more than the fall itself."

"OK, good, sorry to have bothered you," she said.

"No, no, it took courage to do what you did, if I'd needed help, what you did could be life saving."

She smiled, nodded, and said, "Someone asked me once. It changed my life." I noticed her blink away tears that were forming in her eyes, "I always ask, even though some people are angered by it."

I watched her walk away. Then realized I was blinking away tears in my own eyes.

Thursday, August 06, 2015

Risks and Evaluations

I've done it hundreds of times before.

No incident.

No problem.

No pain.

But on Tuesday, last, I got out of my chair to walk from the bus to the door of my office, and my feet somehow fumbled and over I went. I crashed to the ground. During the fall, which took until the middle of next week, I imagined hospital beds, bedpans and boring hours 'resting'. The impact, as you might guess from a man of my size, was, um, noisy.

I was briefly disoriented and slightly dizzy. It took a few seconds to gather my wits together and to survey the situation. I was on the floor. Getting off the floor was going to be an issue. I immediately began looking for options and strategies. (Anyone remember 'My dog Hamish has blue eyes"?)

The driver, who of course was very concerned, was doing everything he could to be a help. What struck me the most was how incredibly gentle he became in dealing with me. His voice didn't betray the panic he must have been feeling at seeing me seemingly helpless on the floor of the bus. He offered me choices, imagine that choices! I don't know what training he got but it must have been good, I respond, at moments like these to choices much better than I do to commands or to decisions made on my behalf.

I figured out a way to get up. I had him put the ramp back up, raise the bus from the kneeling position, I then scooted on the floor over to where I could hang my legs over the edge and go into a seated position. From there, with his assistance, I was able to stand. My first impulse was to ask to go home. My second was, "I'm standing, I am able to walk to the door of the office building, I've stuff to do." He ensured I was safe on my walk, got me back into my chair and then double checked if I needed anything before I went into the building. I assured him I was fine.

A few hours later I realized that I kinda wasn't fine. I began to feel pain from the fall. Bruises flowered on my arm. My 'angry words' which are usually held back by a strong filter, came through a couple of times, as if the filter had been knocked akimbo, and I was very short with a couple of people. (They got their deserved apology today.)

When I was getting ready to go home, WheelTrans, the company that runs the disabled transit in the city, called to see how I was feeling. I thought that a nice touch. I told them that the fall had been my fault, that the driver had been supportive, helpful and gentle. That I appreciated how it was all handled. I had planned on writing them to say 'thanks and I'm OK' that call saved me from that task.

I fell.

Here's the thing, people do fall over.

It happens.

It's kind of a human thing to do.

Slips and falls are, usually, slips and falls.

It's not a crisis.

Shit happens.

But there have been a number of people who have suggested that I should stop walking and rely, now, solely on my wheelchair. I don't walk much, but I do walk. On transit, I walk on the bus, I walk off the bus. I'm heavy, I don't want drivers hurting their backs from helping me. Besides, I CAN do it. I want to do what I can. I walk from my office to the washroom, I have the office closest to the washroom. I can can.

I'm not sure why having a disability takes an accidental trip and makes it into something it isn't, makes it into a sudden evaluation of risk and suggestions for how to avoid those risks. I'm not sure why having a disability makes the decisions I make require input and opinions from others.

I fell.

It happens.

Life goes on.

I don't need a meeting. I don't need an evaluation. I don't need a myriad of opinions. All I need is someone to get me tea when my bruises twinge or my knee throbs a bit.

And I already have that.

Wednesday, August 05, 2015

What's Mine

Joe and I were on our way home and had decided to go a slightly longer way so that we could walk a lovely path through some old University of Toronto buildings. We were very at ease with each other and as we went south on Avenue Road. There were few people out walking and we had much of the sidewalk to ourselves. It's at moments like these that I can look up and around rather than down at people's legs and packages. It's nice.

Just as we turned to go onto the University grounds I noticed that a huge tour was going through. From where I sat I could see three large groups of people each surrounding a young guide, talking and pointing at various statues. Joe, knowing what was going on in my mind said, "Should we just head down the road rather than going in on the grounds." I paused and said, "Yes, sorry, I don't think I can face all those people with cameras." I so easily become the exhibit and there's times I do whatever I can to avoid it.

I was backing up when it hit me.


A small quiet voice?

I don't know. But whatever it was the words came to my mind, "This is my space too, I have a right to it, I can't keep ceding what's rightfully mine."

I stopped, looked at Joe and said, "We're going the way we planned." Joe said, "Why don't you rush ahead so you can get by the first two groups and I'll meet you at the bottom of the hill." It was a tempting offer.

I said, "No."

We went together, needing to ask both groups to move a bit to make space on the pathway, we sailed past them, chatting. Finally we were on the path by ourselves. "Good choice," Joe said, as we were both enjoying the trees, the lawns and the old buildings.


Sometimes they are really small while feeling really big.

Tuesday, August 04, 2015


We turned a corner and had to come to a stop. A small crowd had gathered around one of the museum exhibits and there was simply no way past. One of the girls, with a group of other girls, all around Ruby's age, saw me and said, loudly, "Ewww, he's so fat!" The other girls turned to me and began giggling.

I know that Ruby and Sadie have become aware of other people's reaction to my physical being. These other others see me, put prejudices into place, and feel they know me. They weigh me, not with scales, but with a set of shallow standards and find me lacking, find me less. Public ridicule to them is a natural reaction to a devalued difference. I am not used to it, thought I should be. I am not inured to it, though I've tried to be. I am not forgiving of it, though I want to be.

My fear has always been, as the children grow, that they will come to value the opinion of random strangers over the relationship they have with me. That they will, like me, grow tired of the stares and the random comments. That they will, unlike me who must, decide that they don't wish to live with it. That they will, finally, become ashamed of me and how being with me makes them feel.

"Ewwww, he's so fat!"


Ruby stepped in and turned towards me. Showing those girls her back. She talked with me, quickly, laughing, as if to distract me from what had happened. I don't want an 8 year old girl, no matter how mature she is, to feel she has to protect me from the world. I don't want her to have to step out of being a child and in to being a protector. But, she did. And she did it naturally. While it took courage, it didn't seem to take effort - this is the person she is becoming.

We continued on, she with her hand on my arm, showing connection, showing a kind of awesome defiance, and we went on. Past those children. Past the parents who heard and did nothing, and on into our day.

Leaving them fully and completely behind.

Monday, August 03, 2015


We had finished lunch in the cafeteria at the ROM. On our way out, heading up to see the exhibits, I had to go the long way round through the cafeteria because the side way was blocked. Sadie joined me and said, "I'm going to push your wheelchair Dave." She loves doing this, she takes hold of the back handles of my power chair and pretends to push me as I drive along slowly. I can't go anywhere near maximum speed because her little legs wouldn't be able to keep up.

I have seen our reflection in downtown store windows and, for what it's worth, I think it's really, really cute. I see a big man in a big wheelchair with a little girl in little flip flops tiny hands on handles pushing the chair with all her might. I love the contrasts and, forgive me for being soppy, I love the love in the image. Foolishly, perhaps, I thought others would see the same, or similar, things.

I guess not.

We were nearly out of the restaurant, easing by the end of long, very long, line ups of people waiting to be served. A woman approached. I saw her coming. My size and my disability give people permission, in some bizarre way, to approach me to say nasty things. I only had a second to brace myself before she was upon me, she spat out, "Just what do you think you are teaching that child."

Now this was a new one on me.

I should be more used to this, it's not uncommon. And I am, but her comment through me. I had no idea what she was talking about or what she was upset about. Her question made no sense to me. Was she upset about my weight and that any child who is in relationship to me will suddenly get fat? Was she upset about my wheelchair and that it's for lazy fat people so the child will get lazy? I had no idea. Usually I understand whatever bigoted question comes my way, but this one, no idea. So I stayed silent.

"Well?" she said staring hard at me. "What do you think you are teaching this child?"

She pressed in on me while I just kept on going, "WELL?"

Sadie, hearing her question and hearing that I did not answer, stuck her head out from behind and said "How to be helpful and kind.

She was startled by Sadie's answer. I looked at her and said, "Yeah, what she said."

The line in front of me blocking my way to the exit eased and suddenly we were through and the lady with the startled face, turned and walked back into her life of judgement and prejudice. I hope she was shaken, just a little bit, by the little girl who pushes a really big chair.

Sunday, August 02, 2015

The Other Ramp

There's a restaurant slash bar that's opened near us that Joe and I have been going to for a while. We were excited to see it, even in the renovation stages, because we could both see that the entrance was free and clear. We decided that we'd give it a try once the renovations were done.

One day while passing, we paused to see if there was an announcement of an opening day. The renovations looked nearly done. As we paused we were noticed by a man standing to the left of the door having a cigarette. He said, "You should come by tomorrow, we are open then." I was surprised by the warmth in his voice and even more by the fact that he spoke directly to me, not to Joe standing beside me. I said that we would drop by in the next couple of days, that we couldn't come the next day. I wanted to see how the whole thing worked for me in my chair.

When we dropped in, we found the place comfortable and welcoming and we had a great time. They have a juke box and that can keep me entertained for hours. I love juke boxes. They didn't have a lot of veggie options but promised that they were getting a veggie burger in shortly. They did just that and  the new menu has even more options.

That's the set up for the story.

Here's the story:

A few days ago we were dropping into the restaurant for dinner. A fellow in a manual wheelchair coming down the street, quickly waved at me. I paused to wait for him. He asked me about the accessibility of the restaurant. I said, "Oh, yes, it has two doors but the entrance is flat."  He said, "Yes, I can see that I can get in, but is it accessible?" It took me a second to understand what he was asking.

He was asking about welcome.

An atmosphere of welcome is an integral part of what accessibility means. Getting in, is one part. Being in ... and being welcome ... is another. I hadn't thought of it that clearly until he asked the question.

I understood why he asked me, a fellow disabled person, that question. Only someone in the disability community would be able to assess 'welcome'. Only someone who has a disability understands what it feels like when disability is 'unwelcome.'

I said, "The doors are flat and the attitudes are ramped."

He said, "Good, looks like a good place to go for a beer then."

I nodded and went in.

And was welcomed.

Saturday, August 01, 2015

Just Seen

She was shy, fighting back tears, and desperately trying to understand what was being said to her. She didn't notice me waiting. Neither did he. I could see that she was being trained to operate the cash register, I could hear that English was her second language and one that she was still just beginning to learn. Her teacher, the man who usually ran the kiosk, was brusque and impatient in his teaching methods. Finally, he noticed me, greeted me, I made my purchase. She noticed me too, I saw the kind of 'fear of difference' look on her face that we, who are different, see all the time. She noticed me noticing and looked away quickly.

The next time I went to the kiosk, it's where I buy lottery tickets, or as Joe likes to say, our retirement strategy, so I'm there weekly. She had the same kind of shocked and fearful expression, her English was halting but noticeably better than the week before, she served me, I thanked her. She looked at me again, this time with a bit of curiosity.

It's been over a year now of going to the kiosk and buying tickets. Now, it's different, she chats with me when I buy the tickets and she smiles genuinely when the talk gets silly about what we'd each do with the money from a win. I know, when I go there, I can anticipate welcome.

I saw her yesterday, I was going by the kiosk quickly, aiming to meet Joe downstairs. She saw me and waved and smiled broadly. That was the first time I saw how beautiful she was. She was standing tall, confidently, behind the counter, her gaze was direct and her smile was unrestrained. This was a far cry from the shy young woman who I first saw on her first training day.

I'm writing about her and our first encounter because of how I reacted that first day. The stuff that moved inside me when I saw that her first glance at me, even in the midst of the emotional struggles she was having as she struggled to learn to use the register, was one of fear and, of course, judgement. I moved from the empathy I felt for her as I knew what it was like to be overwhelmed when trying to learn something to the antipathy I felt towards her for the invalidating look she gave me. I had thought to myself, "I can get lottery tickets anywhere, I don't need to go here."

But then I decided several things: I shouldn't have to change my patterns because of someone else's reaction to me; she was in emotional stress and this may have effected the lens through which she saw me; if I decided not to shop in places where this happened, I'd never shop. And then finally, I thought, "give her a break" and that's what I did.

She's grown and changed. She sees me as a full person. There is no hint of prejudice or fear or judgement in how we deal with each other.

I've grown and changed. I'm learning that sometimes my reaction to one thing isn't a reaction to one thing, its a reaction built upon that thing happening over and over and over again. I need to be careful to see one person as simply one person - not as a representative of a whole pile of other people in other circumstances who have done the same thing. I know, now, that it's not be job to educate the community, but even so, I do it by being disabled, being fat, being gay and living in the world - it comes with the territory, get over it.

All this to say, it was nice to see her yesterday.

And it was nice to be just seen.