Wednesday, April 16, 2014

A Big Day

Today is kind of a big day for me.

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

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

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

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

Easily done.


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

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

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

Tuesday, April 15, 2014

Wrestling with Bunnies

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

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

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

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

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

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

Monday, April 14, 2014

Thanks for Nothing

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

I did on Saturday.

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

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

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

Again, from me, a smile.

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

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

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

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

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

But no.

I had to be grateful for being not helped first.

Sunday, April 13, 2014

Mani Petty

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

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

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

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

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

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

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

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

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

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

No bell rung but I won that bout.

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

Saturday, April 12, 2014

Inclusion: Small And All

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

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



A Contribution with Worth.

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

It would have easier to have just made them ourselves.

But it would be wrong.

Because exclusion is, isn't it.

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

Friday, April 11, 2014

The Guys at The Conference

Hey Guys:

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

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

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

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

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

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

So, guys, I'm sorry.

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

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

Thursday, April 10, 2014

Dinner Without The Show

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

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

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

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

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