Hmmm, The Future?

As I mentioned yesterday, Joe and I had arranged a leisurely day off between traveling and lecturing. We got up that morning and had time to read, mess about on the computer, linger over tea and breakfast, it was a great start to the day. We then decided that we'd catch an movie, the one we wanted to see started at 11:40 am, a perfect time for us, so as it got closer to the time, we headed out.

And ended up having a very odd, a bit disquieting, but wonderfully hopeful, adventure.

The mall, itself, was perfectly accessible. I mean PERFECTLY. For example, when you pushed the auto door opener, both large doors slowly swept open leaving lots and lots of room to go through.We felted as if the mall had thrown it's arms open to us, welcoming us in. We headed to the movie theatre and saw Everest, a literally chilling movie, and then had a late lunch and wandered about. Here's what we encountered:

- a restaurant that had a sign up stating that they were able to substitute veggie chicken for real chicken in any of the dishes that they had. Their menu was varied and fully catered towards meat eaters, vegetarians and vegans.

- in the same restaurant seating was available at various heights, making it perfect for me in a tall chair.

- a tee shirt store that had all sorts of tee shirts hung up on display, two of which had rainbow flag motifs with the word 'pride' on them

- a movie theatre that had it's accessibility policy displayed right at the box office, including stating that for persons with disabilities who had a support staff, the support staff would not be charged

- staff in store were the picture of diversity, and that picture, as isn't typical, included those who had both physical and intellectual disabilities

It was simply, and oddly, amazing.

I say it was disquieting because I'm not used to being in a place where welcome is just naturally present. Nothing seemed forced, nothing was done to draw attention to the various ways that the mall was inclusive. It just was.

It just was.

As Joe and I were stopped in our tracks looking at the LGBT tee shirts, I said to Joe, "I don't know how to feel, I'm so used to feeling unsafe as a gay person or unwelcome as a disabled person that I don't know how to react to this place. It's disquieting in a strange way."

Joe agreed.

It's like this is the future we imagined, we fought for, and now that we stumbled into it, it's hard to believe it's true.

But it was.

It was hard to leave to go back to the hotel.

Necessary Silences

Another hotel room that isn't quite accessible. Another round of adaptations. In some rooms I can do this ... in other rooms I can do that ... in rare rooms I can do both. This time we came down a day early so that Joe and I could have a quiet day together. We don't get many of those so we were looking forward to it. When I saw the room, I knew that there were going to be some real problems. I also knew, from hearing the front desk answer a phone call, that the hotel was sold out. So there was no possibility that we could get another room.

Yesterday morning I tried to do a routine thing and almost fell. Almost to the point that my hear beat wildly in my chest as I grabbed for a bar while praying it would hold. It did. Today, I decided not to do that thing and to do something, not as good but at least possible. I'm here now, ready to go to work.

None of this I told Joe.

None.

He won't know until this mornings drive to the venue about the near fall. He won't know about the adaptations and the decisions I made. Like, I decided not to speak to anyone at the hotel about the problems with the room. Which is something I always do.

Why?

Because our day would have become completely about the room and the issues and the problems. And so, I kept my mouth glued shut.

Because sometimes I want him, I want us, to come first. We planned this day. We looked forward to it. And we had a wonderful day. Together.

Now it's work time, now I'll fess up, but only because I'm telling you, and I don't talk behind his back.

Sometimes, my disability needs to take a back seat to my marriage.

And yesterday, it did.

I Am What I Am But He Isn't

I am a proud gay man.

I am a proud disabled man.

Both of these things are identities.

The difficulty is that one of these is much more valued than the other. It is not uncommon for me to read articles that reference sexuality which respect the identity that people feel with how they express their love, how they exist in the world. In fact, that difference, that identity, is often celebrated with flags and slogans and marches down the street.

It is also not uncommon for me to read articles which reference disability which do everything they can to make the 'disability' not real, not important and certainly not an identity. "Label Jars Not People!" is a slogan that's been around for a long time and just won't die. "He doesn't let his disability define him!" "She doesn't consider herself disabled!" These clearly indicate that DISABILITY is something that people are rewarded for disidentifying with and triumphing over. The idea of acceptance of one's difference, unlike every other minority, is no where in sight. Further, the idea that disability as a difference from which a prideful life can be lived is simply laughable to many.

These two things came together in an article and a video that I just read on the LBGT website: Pink News. I'll give you a second to go read it ....

...  OK. Did you watch the video? Read the article?

First, the headline. I've never seen an article about any gay person anywhere on any website that ever said about sexuality, about being gay, "He never let being gay define him." In fact, typically, 'being gay' and identifying, or as it's called, 'coming out' is celebrated. But in the context of his disability, this seems like something that can be said ... in marked contrast to what Paul said in the video, right up front, "I am homosexual." That sounds like a very clear statement of identity, that sounds like he is proud to be 'out' and proud to claim that identity.

Later in the video, it's said that "Paul's family has made an effort not to label their son." Well, that shows too, while Paul speaks openly about his sexuality he never mentions, even when asked a direct question about difference, his disability. I find this disturbing - particularly in a video that is primarily trying to get people to see people with disabilities as worth of respectful language. But when someone with a disability can't or won't use respectful language in reference to themselves or their disability it reeks of shame.

Now I need to be very careful here, this was written and edited by someone other than Paul or his family and it was written to convey a particular message. I don't know what was left on the cutting room floor, or whatever they have now in the digital world. So I don't want to be talking about them in any way, or criticizing them in any way. I'm looking at the product that was created and put out for public view. That product, that video, not the people in the video.

By stating that the 'r-word' should never be said, then creating a video where no other word for disability is shown, the viewer is put in an odd place. Further by suggesting as the video does that people with disabilities need to be respected and then never show how self respect is manifested, the viewer may be led to the belief that the best way to deal with disability is with silence and pretence. Never speak of this shameful thing. When you meet someone with a disability pretend that they aren't.

I admire the intent of the video, I don't like the result.

The headline disturbed me, but then the video explained why they when where they went. In trying to  respect the message of the video, they write about a man with no identity, no pride, no community which to call his own. I think that's unutterably sad.

Meet Francine

Today, I wish to share a video with you that touched me deeply:

Thermometer

Photo description: Hand drawing of a thermomiter.

I don't know if they felt it but I did.

I was showing someone something on my phone, something I wanted to share with them. As I am in my 60's I operate my smart-ass phone with the full knowledge that it has an obstinate mind which loves to battle with me. Younger people seem to have better control over the beast that lives beneath the screen. Anyways, in order to see what I was doing and to see what I wanted to show, a sort-of friend of mine came round behind my chair.

She started to give me advice, much welcomed, about how to get where I wanted to go, and I carefully followed her instructions. She acknowledge that she thought the phone and I had issues that needed working on. However, eventually I found what I wanted and I enlarged it so that she could see it better. I was about to hand it to her when I felt her put her hand on the handle of my wheelchair, something she has never done before, and lean in to see.

I felt that touch on the handle of my chair as much as I would have felt a touch anywhere on my shoulders or back. In the seconds that it took her to look at what I was showing her I evaluated how I felt about her hand on my chair. Went through the gradients of reaction to this kind of touch and ended up with the fact that it felt OK. That I liked her and I trusted her and I was really OK with her hand on my chair.

This signalled to me that our relationship had moved from sort-of friend to actual friend. She had always before respected my chair, never intruded on my space and in that concept of space she had included as people should, my chair. She never asked for permission to put her hand where she put it, it was just a natural move, as if she, like me, was indicating that our relationship was different, was deeper.

It's like the handle of my chair is a thermometer that measures the warmth of my relationship with others.

To me, that's kind of cool.

Do others feel that way?

Himalayan Hotel

Photo Description: snow covered moutain part of the Himalayas

We were presenting in a hotel for, as it turned out, a wonderful group of people. However, when arriving at the hotel we couldn't find the disabled parking. So we drove up this enormous ramp, it was so big that it wouldn't be wrong to call the ramp up one side of the entrance and down the other a massive hill. Joe parked off to the side at the crest of the hill and then came out, having established that this was the right place, and got me out. He said we would ask about disabled parking as we went in.

As we went by front desk, I stopped and politely asked about the disabled parking. We were told that it was at the bottom of the hill off to the side. We asked if there was another way in from there rather than up the ramp, she seemed confused by the question and said that there wasn't.

I said, "So you put the disabled parking at the bottom of a massive hill that would be impossible to push yourself up? ..." I was going to suggest that she mention to management my comment so that they might look at disabled parking in a more practical way. But she leapt to something I hate as a response. She got all offended, "Well, I didn't plan the parking."

I had used the word 'you,' meant in reference to the hotel and the hotel planning people, it's easier in speech. She knew that I knew that she was the front desk clerk and had nothing to do with planning - but this is a favourite way of ending a complaint, become the victim and ignore the complaint.

I said, "I know that YOU didn't personally do it but it was done and maybe it needs to be talked about."

No effect, she was fully in the 'you attacked me for something I didn't do' mode and I looked at her and gave up.

I'm sure that when someone leaves and says, "You all did a good job she doesn't run after them and say, 'I'= wasn't here when you checked in it wasn't me.'" I'm sure she understands the corporate 'you' from the personal 'you.'

But then, when people don't care about disability issues, they do what they do to avoid any discussion of it - and make us, who have been polite, the aggressors.

Sheesh.

second fiddle

Photo description: Man's hands playing a violin (fiddle)

Just about to leave to go give a lecture.

Have been organizing my notes.

Have been doing my stress inoculation to deal with anxiety.

Let me with no time to write a blog.

Sometimes writing has to play second fiddle to real life.

Which is something that annoys me no end.

See you tomorrow.

Just One Too Many

Photo Description: A poster reading: SILENCE the Violence

Today's blog will contain swearing. I try not to have too many cuss words in my writing, although I think my definition of a cuss word may be different than a lot of other peoples, but, without question, I'm going to use a word that everyone agrees is a cuss word. I'm going to drop the f-bomb. So, be ye warned.

It's awful to say but I am accustomed to street harassment. While my wheelchair is a magnet for social inappropriateness, my weight is a magnet for social violence. I know the use of the word 'violence' in this context may be shocking to some, but I don't think that the word 'bullying' conveys the sense of what it's like on the receiving end. It feels like an act of violence so, in my mind, it is an act of violence. That it is violence most often done with words doesn't diminish the impact. So, I am accustomed then to the consequences that come from being different, from living out loud.

Sometimes, though not often, I simply forget. Like yesterday, I was sitting in the car with Joe driving and I was excited. I'm starting a new project that I've wanted to do for over 15 years. The universe aligned, and because of a talented teenaged girl, it's going to happen. So I was chatting wildly about what had just happened, the meeting, the people, the project, the everything. I forgot, which I don't usually, that I am in a car with windows. As I was talking I noticed movement in the passenger seat in the car next to me. I glanced over and saw a man, who looked to be in his seventies, he'd written a message in pen on a piece of paper. It said, "You are disgusting!" As I looked he was pointing at me and my body. Well, gosh, thanks.

But I want to tell you about the day before, we were going down to meet with Luke, a fellow from the office, who we were going to map out our agency 'Accessiwalk.' We were both excited about what we were doing and talking about it. I forgot, in the excitement of doing something that I'm really happy about, that I was out that I could be seen and that the world isn't ever, not ever, really safe for me. I rolled by a young man, all cool, with a bunch of his friends just outside the Ryerson University building. I don't know if he was a student there, but there are lots of young folks around that area. I say this because he could be heard and spoke as if he desired to be heard. He made a crude comment about my weight, forgive me, after writing what was on the piece of paper in the paragraph before, I can't write down another hateful epithet.

It stung of course. It also drew the attention of all the other young people in the area. All of whom presumably had been in bullying classes, all of whom, I'd guess, had learned not just to be a silent bystander. Well, if they had taken those classes, what they learned didn't stick. Their response was silence and staring. Staring not at the person who openly and without fear of reaction, threw abusive words at a stranger, but staring and me for being a stranger with a difference. But that day it hit me hard, I spun around in my chair and said, "Fuck you! OK? Fuck you, you asswipe!!" He was shocked. Not embarrassed, but shocked. He tensed as if he was going into fight mode and I saw no more because I had turned my chair and was on my way.

And you know what?

It's a big secret.

It felt good.

Really good.

I don't want to become like that and I don't want to do that often. But it felt like I was saying it to all the people who'd done similar things before. Like his was just one too many to bear. So, I don't apologize. I don't think I should have too. So the clock is ticking, the sign in the car window the next day is tucked away and, I'm guessing, I'll tell him off in a few months through a good and well placed 'Fuck You!' to someone who hits me when the bruises are still to tender to bare one more punch.

On The PATH To Inclusion

Photo Description: Logo with the letters P (in red) A (in orange) T (in blue) and H (in yellow)

We had a wildly fun morning yesterday. Vita will be having a CN Tower climb, as many agencies do, to raise funds for the United Way. Because that particular fund raiser is so high profile and because there are many who would like to particpate but cannot physically take the challenge, a parallel activity is being planned. It's to be an 'accessiwalk' through the tunnels, up and down ramps, through sky walks and sky ways, through malls and through parking lots, up elevators and down elevators, through train stations and convention centers and which ends right at the base of the CN tower. The two groups would then meet and go out for lunch together.

The challenge was to find a route that was completely and fully accessible. The PATH, which is Toronto's underground walkway isn't completely accessible as some ways are blocked with stairs. So we had to actually walk it and map out a route. There were many options:

Photo Description: Map of the underground walkway.

Even with some of the pathways not accessible to me in the wheelchair, we easily found other ways, primarily because we met several of the nicest security guards you can imagine who quickly, and proudly, pointed out how we could get to our destination.

So we had an awesome fun time, our little committee and me, and we've come up with a really fun parallel activity that can be done by all. I'd never tackled the PATH before and had a grand old time, I think I was grinning all the way through. Partly because of the fun, and partly because at the attempt to make an event, with choices, that allows for everyone who wants to, to participate in some way.

How incredibly awesome is that?

The Other Chair

Photo Description: Book Cover with the title The Brainiest Insaniest Ultimate Puzzle Book!

One of the first things you would notice about our front room is my chair. It's a beast! It's oxblood red, odd for a vegetarian I know, it sits on four huge cinder blocks, it has a wide seat and even wider arms. It's tall. It's comfortable. It's a bit imposing. It's also clearly, my chair.

Sometimes when we've been on the road for a very long time, I begin to long for 'my chair' in order to get out of 'my chair.' My wheelchair has comfortable seating but after hours and hours in it my body gets tired of the feel of it. If that makes any sense at all. So getting home to my chair is wonderful. Everyone who visits knows that that's my chair - not because I'm selfish but because I can't use any of the many other chairs in our front room.

Ruby and Sadie both love puzzles. All different kinds of puzzles. I love puzzles. All different kinds of puzzles. Joe and I went in search of a puzzle book suitable for kids but with challenging puzzles to work on. We found a perfect one, well, except for the title, which I did not notice, really notice, for a couple of weeks. It is full of the kind of puzzles the kids love.

So, when the visit, as the just did, when we get home from somewhere, instead of turning on the television. They grab the book, one or the other of them, sometimes both of them, and then climb up on to the arm/s of my chair. And we do puzzles. We laugh a lot while doing them. We discuss how hard they are. We agonize over when to give up and go to the solutions at the back.

I love the look on their faces when they find something in a puzzle. We last did one where you had to find what seemed like 15,000 things in a picture that ended with the letter 'O'. Sadie glanced at it, pointed and shouted 'Volcano!' Her face lit up with pride and a sense of achievement. I kept that picture in my mind for a long while after. Ruby, too, gets excited. She looked at one of the differences in two pictures and saw in one that the little boy had lost his head and then found his face on a balloon flying high. "Gruesome!" she announce, "Awesome!" I still laugh about that.

Last time we did puzzles, I was in my wheelchair while Ruby sat on the arm of my other chair and Sadie leaned over the back of the chair. The three of us were concentrating hard because they had to go home in a few minutes. "We can finish it," Ruby announced. They cheered each other on as we searched the puzzle and counted the things we found that began with the letters, "Dr". At one point Sadie, draped over the back of my other chair said, "Dave, you've got the bestest chairs ever."

And I do.

I've got one on wheels.

I've got one on blocks.

They both serve me well.

The Flying Sisters!

They were sitting together in the front room and guessing.

Ruby and Sadie both knew that our big birthday gift was an activity, not a wrapped present, but we had not told them what it was. They knew we were leaving to go to wherever we were going in about an hour and were now putting their heads together to try and figure out the destination. I was at the computer, checking on the address for iFly Toronto, which was where we were going, and listening to their wild guesses.

"The CN Tower."

"The swimming pool."

"Hot Air Balloon."

"Swimming with the Dolphins."

Then something kind of wonderful happened. Ruby said to Sadie, "I think we're going horseback riding." Sadie got all excited and said, "I love horseback riding," then she paused and said, "But how will Dave go horseback riding?" Ruby said, "We have to figure out how to make horseback riding accessible for him."

The ideas flowed. "Build a ramp up to the horse's back." "Get a strong horse with a big back and then Dave can ride on it like they do on elephants." "Put in a little elevator so he can get up to the horse." "Have a horse trained to lie down so he can get on it then." Their ideas continued, half joking, half serious.

It felt wonderful that they were thinking like this, that they automatically assumed that I would be fully part of the activity and that anything could be made accessible if only it was thought about.

Suddenly it was time to go, they still didn't know where they were going. They still didn't know that soon they'd be flying. After their conversation though, they could not possibly fly higher in my heart.

Mine ... and Then Yours

Photo description: A cartoon drawing of a donkey's head.

Joe was going down to get the car, I was getting off at the lobby to go out and wait for his arrival. Our building is near the university so every September we have a new batch of students living here. The are almost, to a one, lovely kids. As we rode down one of these new students, a young fellow, was riding with us. I got out of the elevator first and said to him, "Do you mind if I follow you out?" He understood immediately that I wanted him to hold the door for a second so I could come through. "Sure," he said, eager to be of help. I could see he was a nice kid.

Now we are in the outer lobby and I said to him, "I'll do the next doors by myself but thanks for holding this one." He nodded and then opened the next doors, which are double doors, and looked back holding the right door open. I smiled and said, "No, it's OK, I can get through on my own."

He said, "Oh, I see, you need both doors held open. I can do that." Then he moves to hold them both open which, of course, has his body blocking the way. He holds it like this for only a second and then he begins to laugh. "You can't get through me now can you?"

"Well, no," I said.

"I should have just listened, right?"

"Well, yeah."

"I'm sorry, sometimes I try to hard, causes me all sorts of problems." He continued to laugh.

I laughed with him and said, "My disability has me sitting on my ass ..."

It took him a second and then he exploded with laughter, "... and mine makes me an ass!!! That's wild, that's wild, that's just wild. I'm going to use that all day today!"

Then, with a wave, he let the door go, I pushed my way through, and got settled to wait for Joe. When the young student got to the sidewalk he turned, waved, and I heard him start to laugh again.

As I said, nice kid.

Multiple Messages

Yesterday I was sitting on stage, waiting to begin my presentation, when I was asked about my introduction and if it was OK for Joe, who was setting up the book table, to be introduced as well. The woman introducing me knew that Joe and I had married earlier this year and I knew that she'd be introducing Joe to the audience as my husband. I quickly, and without reservation, agreed that he too should be acknowledged as he too was working there that day at the book table.

I watched the audience as the word 'husband' registered in their minds. I saw no discernible reaction, other than pleasure to have heard that we had married. Several people came to congratulation one or the other of us over the course of the day. Others mentioned that they knew about the wedding from reading the blog or from watching it on YouTube.

While I have always mentioned Joe in my presentation, he's in a lot of the stories, and I've never hidden my relationship in any way - there is something powerfully clarifying in the use of the word 'husband' that I have come to like. There is no room for wilful misunderstanding of the nature of our relationship.

During the day I needed Joe's help from time to time and I noticed that a few people noticed the kinds of things I needed Joe's help for and the way we interacted when we were accomplishing goals ... like getting up and down the ramp or transferring between chairs. I'm used to that kind of notice anyways but this was a little different. It seemed that people were watching both from a disability curious perspective and also a relationship curious perspective.

I had a brief moment alone at the end of the day and a person from the audience came to me, shook my hand, and got all choked up when thanking me for being out and open about my relationship. They fear being fired. They fear massive rejection. "But you being so natural with your relationship ... um ... and my boss admires you, I think it may be better," a pause, "I hope it gets better. They say such awful things."

I left hoping people had learned from the lecture and, maybe also, learned from seeing two old men in relationship, in love, with each other.

Weaving Through People

We went into a restaurant. It was the kind where you go up to the counter, read the menu on boards above the till and place your order. We chose it because we heard they had lots of veggie options, and the rumour was true, they did. When we entered, we were the only one's in the line up. After we ordered we turned to see that there were fifteen to twenty people lined up behind us. We had just beaten the lunch rush.

After paying we were given glasses to go and fill up our drink from dispensers located on another counter just kitty corner to the till. We did that. There were now near thirty people lined up, another cashier had come to help take all the orders. We went to get a table and this was when I realized that I couldn't get into, or through the tables because they were so closely packed together. We had planned, on entering to sit at the raised area at the window at the front of the restaurant, and had noticed lots of room to move around there. I didn't look closely enough at the rest of the place primarily because there was no one there.

The only way I could get back to where we could sit was to go back down the entry way, now filled with customers waiting to order and be served. I grit my teeth and headed over. I asked politely for people to let me by. They all did. They were all really nice about it. I asked over and over again, of course, because many were talking amongst themselves and weren't noticing me coming through the throng of people. Even so, as I said, I asked and every moved. I said 'Thanks' and pretty much everyone said 'No problem.'

So nothing bad happened. 

People were nice.

But even with that I found myself exhausted from the experience. Having to ask, needing people to help out, constant thanks on my lips, the incredible sense of being in the way, all these things are part of the high social cost of being disabled.

I sat there and watched everyone else filter through the maze of tightly packed tables to a place to sit and simply continue on with their chats or with their phones or simply with their lunch. I had had at least thirty more interactions than they did to get the same result. I'm not sure why I don't feel myself enriched by that difference, but I don't.

I get tired.

Does anyone else?

Accessibility On The Road

Phot description: Part of a sign with only the word 'accessible' showing.

It's always a real adjustment. No matter how many years I've been doing this, it's always a bit of a wrench when it comes to the first road trip of the fall. After the summer, where I spend most of my time at home or in my office, the packing and travelling and the consulting and the lecturing and the hotel rooms and the restaurants and the issue of access constantly in our minds comes as a bit of a shock. What makes this bearable is that I love what I do and I love the opportunities that travel gives me to meet people and to learn and to share ideas.

We've been really lucky on this trip because everything has been perfect so far. Everything has been perfectly accessible. It's weird to use the word 'lucky' when meticulous planning, and phone calling, preceded the trip - but we've learned that these don't guarantee a problem free trip. Luck does. One day I hope luck has no place in the vocabulary of a disabled traveler!

I wanted to mention a stop that we made on our trip. We've stopped there before, to shop and to eat, and we know it to be physically accessible but have often found the customers to be less than welcoming. We go there anyways because it's the perfect location for a pit stop on many of our trips and, though the customers aren't particularly welcoming, the staff are great.

We noticed it right off, on entering, a change. People were just being nicer. If I was behind two people chatting, they moved without a fuss and even spoke to me, jokingly about their carts. I thought that maybe some new people had moved into the neighbourhood of the store. But that couldn't be it because throughout my shopping I experienced a kind of informal welcome that hadn't been there before.

Then I noticed a fellow, nice looking older dude, working in the store. He was helping out a shopper who was looking for something. This guy had the gift of the gab, chatting away, laughing with the customer, they were clearly enjoying their hunt for a particular product. Later I saw his picture on the wall as being the store manager 'on duty'. That he was in a wheelchair couldn't be seen in the picture, but there, in real time, in real life, he was on the job.

He, later, helped us find the applesauce packets that the kids love, I had to work hard to keep up with him as he flew down the aisles, never coming close to crashing into anyone or anything. My power chair was panting when we arrived where we were going. He joked that he was giving me a good run. Charming guy.

My guess?

He went into that store and made it fully accessible - fully. It was physically accessible, but it wasn't fully accessible. Attitudes had changed. People reacted very differently to one disabled person because of the work of another.

I think that's such a big part of creating inclusive spaces.

Best intentions can't do it.

Education can't do it.

Only people with disabilities can do it - by being there, by facing attitudes down, by normalizing the experience of having a disabled person in the same space.

The world has been made more accessible and, as a result, more welcoming in the way it's done. One space at a time.

Lectures on Language

It's frustrating, sometimes, that the desire to be true to who I am, results in such resistance. Let me explain. I was talking with someone the other day and I said something like 'speaking point of view of a disabled, fat, guy,' and I was stopped and given a wee bit of an angry lecture. Before going on, I was making the  point because I thought that the 'disabled, fat, guy' point of view was illuminating to the discussion we were having. We two professionals in the disability sector of service provision, that is.

The lecture I got made these points:

1) I needed to use person first language when referring to myself.

2) I needed to stop 'being down on myself.'

3) I needed to have a more positive view of myself.

4) How do I expect other people to treat me with respect when I don't respect myself.

Comically, I think it's funny to be lectured on how to be disabled and how to speak about myself as a disabled person by someone who does not have a disability.

Not funny was the implications of what she was saying.

In essence she was saying that what I am is automatically bad and has to be framed in a particular way and couched in particular obscuring language. It's like I'm supposed to assume that shame is attached to words because others have made that assumption.

Well.

I don't.

I am fat.

I am disabled.

I am those things, I have experiences as a result of those things. I want to bring those experiences to the table. 

I begin to wonder if there is a need to silence the voices of those whose very acceptance of who they are threaten whole systems that are built up, not to eradicate shame but to embed it into how we understand and how we relate to disability and difference. To control how others speak of themselves is, kinda, the ultimate form of control.

At one point I was told that I was 'putting myself down' by using these words.

Really?

This tells me more about the woman I was speaking to than it does about me or my representation of myself.

She thinks that disability is a bad thing and to openly identify as a disabled person is to a 'put down' ... fat ... yep, a 'put down.'

Well, we've been 'kept down' but our being isn't the reason why.

I continue to be who I am, openly, and I continue to speak of and write of myself in whatever manner I chose.

My body.

My language.

Officially A Prommer

Photo Description: Royal Albert Hall packed full for the Last Night of the Proms

Yesterday afternoon Joe and I, along with two friends Belinda and Susan, kept a tradition alive by attending The Last Night of the Proms. Wonderfully, given the time change, it's really, the Last Afternoon of the Proms for us here in Canada. Broadcast live, we get to catch the excitement of the event along with a packed movie theatre full of other Canadian Prommers.

We all got in just before it started, I said hello to a fellow wheelchair user that we often see at these events, and settled into our seats. I really enjoy this particular tradition. We don't see our friends often enough so the Proms is both a reason and an excuse to get together. We have lunch, then we gorge on the music and the atmosphere.

I am not the classical music enthusiast that some of the others are. I enjoy it, but am not rapsodized by it in the way, say, Joe is, so for me, the Proms is perfect as it's kind of like a classical variety show - there's something for every taste. This year, though, I was truly swept away by the music.

There are things that are going on in my life that are pulling my heart and my mind and my attention in such a way that I feel, often, distracted and disorganized. Grief. Anxiety. Excitement. Annoyance. Frustration. Hopefulness. Anticipation. Worry. Anger. Joyousness. Pride. Devastation. All of these emotions jockey for prominence and sometimes I fell tossed from one to another as if my emotions are playing catch with my soul. I manage to stay on top of things by a sheer act of will. On top of all that my disability is changing slightly and I'm having to focus a bit more on things that I thought had been resolved. All of these things individually are minor - but when combined together is overwhelming at times.

Then this 23 year old kid, Benjamin Grosvenor, walked on to the stage and played Shostakovich’s 2^nd Piano Concerto, something I've never heard of before, and something that I would have joked about with Joe - couldn't composers who wrote pieces with thousands of note come up with an actual NAME for what they wrote? Anyways the piece was unutterably beautiful.

And for a moment.

I wasn't me anymore.

My life wasn't mine.

I was transported away from emotion and from to do lists and from worries and, mercifully, from hopes and dreams. It was as if the music came into my mind and pushed the furniture out of the way so that the pathway to my heart was clear again. It was wonderful to be able to be led to a place where I existed and didn't exist at the same time.

There were several other moments, in what I think was the best Proms we've seen, where I was fully engaged by the performances and by the atmosphere both there in Albert Hall and the theatre here in Toronto. The moments of escape from the 'daveness' of my life were so incredibly powerful.

As the camera panned the audience in other venues across the UK, I saw another fellow in a wheelchair, only one, who was with two women who were talking. He looked, like I think I looked when the Concerto played - as if ramps were being installed in his mind.

We hugged as we parted and went our separate ways. I felt ... ready.

And that's all I need.

Two Legacies

I was simply going through my messages. One by one, dealing with the requests or responding to questions or, simply taking in the information. It's what we all do. I opened an email, from a colleague, expecting a typical friendly note. Instead there was a message, sent to a number of different people, telling us that he was dying. A few details were given about his illness, it was clear that the end was in sight and that we were both being informed and being asked to respond with prayers and thoughts but not emails and calls. We were also asked to keep information as to his health as confidential as we could so that, while he lived, he could control the flow of information about him, and his illness.

Even though he and I have only met a few times, those times have always been rich with laughter and with leaning and with the kind of love that comes from two hearts and two minds who share one passion. Put simply, he is a great guy. I will miss him.

Then I thought about his contribution. He's made a great deal of difference in the lives of people with disabilities. He came up to Toronto as part of Vita's Masters Series and was hugely popular with our staff and with the staff that attended from other agencies. He could train. Man, he could train. He was always welcoming to Joe and recognized, deeply, our relationship as a real relationship. He gave lip service to nothing, if his words said it, his heart believed it.

As I was thinking through his list of accomplishments I remembered something. Manuela, at that time, before she passed away, was the ED of Vita. We, she and I, were to go to a conference together in New Orleans. At the last minute I was unable to go. Manuela had not been to that conference before and was disappointed that I wasn't able to go because I could have introduced her to people there.

On her first day there she said that she'd run into this fellow and recognized him from when he was up at Vita. She said that he immediately embraced her, brought her into his group and made sure she felt welcomed and included and she had fun.

I found it interesting that as hard as I tried to keep my mind on his contributions, via his work and his passion, I kept coming back to how he was in the world. How he treated people.

I think there are two kinds of accomplishments that form our legacies. What we did and who we were while we did what we did.

He will leave a legacy of commitment and caring and change for people with disabilities.

He will leave a legacy of commitment and caring and change for everyone who knew him.

That, in my opinion, is the mark of a well lived life.

I shall miss him.

What's Cooking???

Photo Description: Students from the culinary arts program at Humber holding a plate with a fine looking burger and yummy looking fries.

It's September, so it's busy on the bus again. During the summer there are fewer people up early in the morning so I often travel alone. But BAM! come September that changes. I get to meet, and chat, with some new people. I enjoy it. Not only does it make the ride go faster, I listen and learn from others who experience and live with various disabilities.

On Tuesday morning, the day after Labour Day, I was on the bus when we pulled to the curb in front of a building I didn't recognize. The driver put down the ramp and on to the bus came a young woman with an intellectual disability. She was travelling with her mother and it took a few seconds for the driver to get them both in and on. We all said our 'Hellos' and then lapsed into silence.

The silence didn't last long. Soon the young woman was talking about her excitement at starting her first day of college. She mentioned that she was going to the culinary arts program which is a collaboration between Humber College and Christian Horizons, an organization which serves people with intellectual disabilities.

I had followed the development of this program through updates on Facebook by a wonderful and vivacious woman, Irene Moore, who I have known on and off for many, many years. Irene often spoke of the vision of having this partnership and of the students getting real training of real value for real world employment through an opportunity for a real college experience. Her words, on her Facebook posts, came alive here, in the real world.

There was a day, not long ago, when it would have been impossible to even think about a person with an intellectual disabilities attending class at a college. There was a day, not long ago, when young people with intellectual disabilities looked to a future nearly barren of any hope for life or for work in a community to which they had membership.

The chatter on the bus between mom and daughter didn't have a disability framework, it was about college, it was about expectations, it was about hope. The fact of disability wasn't eliminated or eradicated or ignored, it just didn't have a place in what they talked about. It was the first day of a new stage of life. It was about nail polish. It was about fashion. It was about cell phones. It was about stepping off the bus and on to a college campus.

I heard about the vision from Irene on Facebook.

I got to see what that vision lead to in real time in real life.

What a thrill.

Congratulations Christian Horizons, congratulations Irene, you may never see what I saw -- bus ride, on the first day of school, with a young woman excited about her life and bursting to get at it.

Community.

Disability

Not incompatible terms.

Sex Education: An Open Letter to Premier Wynne

Photo Credit: Sign saying STOP SEX-ED with a red X through the words carried by a protester regarding the new curriculum in Ontario

An Open Letter to Premier Wynne and To Those Opposing The New Sex Education Curriculum,

Protection gives abusers permission. Put simply, that's been the experience of people with intellectual, and often other disabilities, whose access to information regarding their bodies and their right to refuse unwanted touch was restricted by those who claimed that ignorance of the facts about sexuality was protection from the dangers of sexuality. They were tragically wrong. I have been, and continue to be, an advocate for the right of people with intellectual disabilities to have access to information and the right to attend and participate in sex education classes. In the early days there were those who were convinced that the sky would fall the moment we taught someone with a disability the correct names for their body parts, what those body parts were for, and their right to healthy boundaries.

The sky did not fall.

But abusers were put on alert.

We found two things which, I think, illuminate the discussion that's presently raging regarding the new sex education curriculum in Ontario. The very first sex education classes I taught were to people with disabilities where the average age was in the mid forties, the group was very difficult to teach. Not because they have a disability related to learning but because, in the absence of information, they learned anyway. We discovered that each of them, every one, had been on a sex education curriculum designed by the media.

They learned about relationships from soap operas.

They learned about body image from commercials.

They learned that a woman's no did not mean 'no' - it meant try harder.

They learned that gentle men were losers and callous men were sexy.

They learned that force wasn't force it was passion.

They learned that it took seconds to fall in love.

They learned that love was expressed only, and best, by sex.

Each person in those classes came there fully informed about sexuality. Every time they turned on the television, they had learned. Every time they listened to a song on the radio, they had learned. Every time they opened a magazine, they had learned. Every time they saw a billboard, they learned. They had been surrounded by sexual information and sexual messages and as they had no accurate information with which to understand what they were hearing and seeing, they did what was reasonable. They believed the messages.

Premier Wynne, the result of 'protection' from information for people with disabilities had tragic consequences, beyond even this. Statistics have consistently shown that people with intellectual disabilities suffer extremely high rates of sexual abuse. Keeping people from information simply made them good victims.

They were denied the language with which to report abuse.

They were denied the understanding of their right to appropriate boundaries.

They were denied the information necessary regarding how to report abuse.

They were denied the right to use a powerful and informed voice.

As you know, this has changed in Ontario. People with intellectual disabilities are now required to receive abuse prevention training across the province. People thought the sky would fall when the legislation went into effect.

The sky did not fall.

But power shifted under the feet of abusers.

The courageous act of the government to tackle the issue of abuse by empowering people with information, with language and with voice has altered the landscape of service provision. I believe that the stated goal of the curriculum - that students become safer and stronger - is not only timely but a worthy goal of any government regarding the children it serves.

Stay the course.

Dave Hingsburger