Wednesday, September 02, 2015

The Fence

Every day, after summer camp, we pick the girls up and head straight for the ice cream truck. This is a wonderful part of the day because Ruby and Sadie are full of stories from the day, telling us all they've learned, all the crafts they've worked on and about who dodged dodge ball best. Yesterday, after cones were eaten and stories told, it was time to walk home. Joe and I have decided that we'd walk home a different way every day. There are many routes, there's no need to use only one.

Our route took us back by the ice cream vendor and the entrance to the camp. Along the sidewalk there is a low fence, set a perfect sitting level, where people who get ice cream or hot dogs often sit to eat and chat. We had gone to the front of the building to sit on the seating provided there. Most people were gone and no one was sitting on it. Sadie was the first to decide to jump up on it and walk along the narrow bar. She waved Joe over, took his had for balance and then, like a tight rope walker, carefully made her way forward.

Ruby, thinking the idea was a good one, jumped up too. She's a little older and she has tremendous balance so she didn't need to hold hands. She wanted me to ride close by her so she could reach out and grab my shoulder if she felt that she might fall. I pulled my wheelchair up close, Ruby stopped, touched my shoulder and said, "That's perfect!" Then she set on her way. It's a fairly long fence with a couple of turns but Ruby only needed to used my shoulder twice, both times to momentarily regain balance. The rest of the time I concentrated on simply going along side, shoulder ready at any moment.

As I watched Joe and Sadie, a few steps ahead, and glanced at Ruby concentrating on her walk, it felt wonderful to be in their lives and trusted to be there to make hard things easier, to make risky things safe to try. It's an amazing thing to be freely and easily handed the trust of a child. I felt honoured, I could see Joe did too.

But as we walked, I thought of the work that we do, those of us who work to support people with disabilities. This is what we do, isn't it?

To be the 'shoulder' when a 'shoulder' is needed.

In any way that it is needed.

Both Ruby and Sadie were thrilled to make it all the way to the end of the fence. "I didn't think I'd make it ALL THE WAY!" Sadie said excitedly. "I didn't fall once!" Ruby said, proudly.

It's amazing how far people can go, when they've got the right support.

Tuesday, September 01, 2015

Service, Support and Success: September Issue Released


The new issue of Service, Support and Success: A Newsletter for Direct Support Professionals is out. This month looks at 'the power of a growth mindset' ... If you'd like a copy or a free subscription, please just email me at

Today's blog follows.


This is such a nostalgic time of year for me. I imagine that there are those, like me, who find September and the beginning of the fall season more like 'New Year' than 'New Years.' September for so much of my life was the start of school, in Salmo then in Campbell River, then in Victoria, then in Toronto. I loved the sense of a new start, I loved the nice clean books with pages left blank for me to fill with notes, with drawings and doodles, and with, tucked in margins, hopes and dreams.

We were walking through the U of T campus near us and saw all the young students rushing off to destinations they hadn't found yet - not realizing that this would be the way it will be for their entire lives. We saw parents teary goodbyes, we saw boxes and boxes and boxes of Kraft Dinner. Excited chatter contrasted with solitary anxiety as various students with various ways of dealing with change unloaded cars and vans and trucks.

It's hard not to envy them. It's hard not to wish to be amongst them and feel the feeling that the life yet to come holds so much promise and so much uncertainty. Even though I like the life I'd leading, I like the direction I'm going, I like the predictability - inasmuch as it can be - of my life. I know where I'll be in November - giving a keynote in California. I have a calendar and there are all sorts of things listed to do, people listed to meet, reports listed to be written, meetings listed to be had, travel listed to be done. I'm good with that.

But. Still. I kind of like the idea of a new start, of blank pages, of pens yet unclicked.

So for those like me, who are feeling this feeling.

Happy (Real) New Year

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 ..."