The Arm, The Shoulder, and Accessible Space

We had gone to the Royal Ontario Museum to see three exhibits. That is a lot to fit into a visit there, but we were determined Ruby and Sadie and their mom, like us, had been looking forward, like us, for awhile. We started with the spider exhibit which was simply amazing. It was so interactive. It was packed with information. It was well worth our time. For the most part the exhibit was accessible but there were a couple of spots where people in wheelchairs couldn't enter, which was unfortunate because it was a structure built for the exhibit, so they could have, but didn't, which is a message that I simply refused to hear. I didn't want to be on accessibility patrol, I wanted to have fun.

After lunch we went upstairs to see the other two exhibits, Transforming Fashion and Transforming Space. Half way through the fashion exhibit Sadie had to take a bathroom break and her mother went off with her so Joe, Ruby and I wandered further into the show. At one point Joe broke off and said that he's wait there to let Marissa and Sadie know where we all were.

Ruby led and I followed, she knows the museum inside out, and turned a corner into a small space that was showing a movie about the designing fashion exhibit. When I came round the corner I saw two men, sitting closely together, one with his arm around the other. Ruby sat down, I parked beside her. One of the men glance our way and immediately took his arm away from the shoulders of the other man.

My heart broke.

They felt danger with us there. The touching, which was no more than any straight couple would do, had been tucked away into a quiet corner of the exhibit.

I wanted to scream.

Not at them.

But at the world that they live in.

Where fear is an automatic response to being seen.

I couldn't watch the movie, all I could think about was that the touch stopped. I constructed things to say to them, but it all sounded good in my mind but would sound silly or patronizing coming out of my mouth. I couldn't reassure them that it was safe with us to be affectionate. But I don't own space and it's not for me to grant accessibility in my presence.

There are all different kinds of accessibility and they are all about access and welcome and safety. It's too limiting a concept to reduce it to a ramp and a lowered counter. We, as the disability community, need to begin promoting accessibility in all its forms in an inclusive manner.

Its a challenge for us to be as inclusive with the concept as we can. We may be routinely left off the diversity bus, but we don't have to return the favour.

Accessibility doesn't belong to us.

But we sure as fuck know how it works.

And what it means.

And what it can do.

It transforms lives. We have the concepts up, dusted off, and ready to go. So, let's lead.

Is She Safe?

Yesterday, after the gym, we went grocery shopping. Maybe I should rethink that routine. However, I got out of the car and into my old chair. It's the one I use in the gym because it's already beat up. After using the new one for quite a while now, this one feels like a clunker, it's heavy, it doesn't glide, it challenges me to get it where I'm going. It's like it's annoyed that I dragged it out of retirement just for the silly purpose of getting toilet paper and wet wipes.

Anyways, I was pushing uphill towards the store and working hard to do it. The traffic stopped awaiting my passage over the pedestrian marked route. A woman saw me, saw the traffic and headed towards me. Joe, who often intervenes in these situations had stayed behind gathering our cloth bags to pack the groceries in. He arrived to see her headed towards me, saying, 'Would you like some help?' with a determined face. I said, "Thanks, but no." She stopped, to her credit, didn't press, a testament to her ability to listen, turned and left walking the stiff walk of the mightily offended.

We got into the store and a short time later I was behind an elderly woman, holding on to her cart for dear life. She had stopped. I asked her if I could pass by and she startled for a second and pulled over to the side. She and I chatted a little bit as I went by, a lovely lady.

Over the course of the shopping trip, my chair grumbling all the way, we kept running into each other. She always had a quip or comment to make. She was funny. She was also, I realized, accompanied by the woman who got annoyed and offended by my refusal of help.

And that scared the shit out of me.

You see, I think if someone is impatient with me, for simply wanting to be independent, what do they do to those in their care. What needs do they get from helping and are those needs healthy? What will impatience turn into when no ones watching. Anger? Frustration? And what will those emotions translate into when they become actions.

Is she safe?

You may think this a stretch. I do not. I think good staff see the word 'no' in relation to an offer of help as welcome. They see it as a sign of independence and effort and even self esteem. I think that good staff feel honoured when someone they serve isn't afraid of their power and their temper and their prejudices.

But.

I help you because I need to help you because I have a hole in my soul that needs filling with your dependency on me. Your vulnerability and weakness is necessary for my feeling good about who I am. Pushing you into the store excuses me from pushing myself into a fuller life.

She may be safe.

I hope she is.

But I fear she's not.

Help

We needed help with something here where we live so we called Marissa to see if she'd come over to give us a hand. She arrived with the girls in tow and she and Joe set about doing what needed to be done. We would not have needed help if I wasn't a wheelchair user, but I am. This used to bother me. Not any more. People need help all the time. I need it much less than people think I do and sometimes much more than I'd rather. I wonder if we all have complicated relationships with being helped, probably so.

While they were doing that the girls and I went out to play basketball. We live on a circle, a little roundabout, with a basketball hoop  set up at the edge of the circle. So we went out and tossed the ball around a bit. Then we set about shooting for a basket. We play a game. You shoot until you get a basket and then you count the number of baskets you get in a row. The one with the highest number of baskets is the winner. I never win, but I'm not always last. Since I was horrible at the sport in the school, I feel great victory when I score.

Another thing I do is time the girls, one at a time, running around the circle while dribbling the ball. Sadie didn't feel like doing that this time. Ruby did it in 17 seconds.This time for the first time, I wanted to try, sans dribbling of course, and it took me 50 seconds. I pushed hard and some of it was downhill.

After a while Joe and Marissa came out to join and I asked if someone would walk with me as I pushed over to the sidewalk and then up to the lights and then back along the running path to the entrance to where we live. I am planning a very long push in a couple of weeks and I wanted to see how I managed on the terrain. The uphill was a bit of a struggle, one that I was left alone to have, but I made it.

Why am I telling you this?

Well.

When I was first disabled and we had to call for help because I wasn't able to assist Joe with something, I went dark. Very dark. I felt useless. I felt unnecessary. I felt the weak link in the relationship. I hated it. Sometimes, depending on what the help needed was, it could affect me for days. I found it hard to make peace with interdependency  even though I preached it in the lectures I gave. I wasted so much time.

Yesterday we needed help. We asked for it. While it was happening I played basketball. We were laughing, urging each other on, and competing hard to win.

I didn't come close to winning.

I came last.

But, this time, in life, I came first.

lady liberty

A woman with a disability stopped by my office briefly today. She said that she wanted to talk to me next week and we set a date and time to sit down and talk. She told me a bit about what was going on so I'd know what she wanted to talk about. She told me about things that were coming up that she was scared of ... and she told me of changes she wanted to make. She looked emotional and completely engaged in what she was saying. 

I listened.

And I listened hard.

This is a woman I met when she was living in a huge institution. There people feared her. There people avoided her. There life passed her by.

Her eyes.

When I met her.

Were dim like the dark that comes when life is no longer fuel.

Her voice.

When I met her.

Was soft, and distant, as if she'd given up the idea of being heard.

Now here she stood. Fire in her eyes, strength in her voice. She is fully engaged and takes each breath like it matters, really matters, that she is living.

She held no torch.

But she is lady liberty.

Her road has been long and hard. But is it is her road. For better or worse she decides which turns to take. And she wants to talk to me, again. She remembers the first time we spoke. She remembers me being there, in that place, she remembers the captivity.

So we will meet and she will have things to say, stories to tell, demands to make.

Not just because she is alive.

But because she is free.

And the lights turned back on.

f**k

Note: I was unable to download the video to the blog, see the link below.

I was challenged yesterday to explain my involvement in this video. The challenge came because the person who was upset with me 'thought I knew better.' Words flowed like 'inappropriate' and 'vulgar' and 'offensive.' What I wasn't able to find room to do was what they asked me to do, explain why I had written this, when requested by Open Future Learning, to write short vignettes about support, about service, about disability and about ableism.

Several years ago, working in Ireland, I was teaching people in their early 20's about sexuality and abuse prevention. All the participants had Down Syndrome. At one break I referred to a young man as 'just a kid.' Now I did this because I was way older than him, I meant no disrespect. But disrespect was taken. He turned on his heel and stated clearly and loudly, "I am a man!" I felt the slap he intended. My usage of that word in his presence, my calling him that word, ignored a lifetime of being considered 'a big kid' and having his adulthood diminished. That was the starting point of me really looking at whether or not I was able to see people with disabilities as adults.

When it came to writing some vignettes for filming, I sat down and thought about a variety of situations. The theme of adulthood, and asserting adulthood kept coming to me. I remembered speaking to a couple with intellectual disabilities who were having trouble in having their relationship recognized as legitimate. It was called 'cute' and 'sweet' and there were a lot of subtle put downs. They felt like they were treated like two kids in kindergarten that got a crush on each other. He joked, "If they only knew we fucked." We all laughed.

Hence, the video.

I am not unused to controversy. Over the course of my career, I have been the cause of much of it. Being pro-sex and pro-adult at a time when that was not a popular view was a bit of a rough road. Some of the reaction to this reminds me of that.

Some will say they are offended at the language.

Some will say they found the use of the language in that situation rude.

Most won't identify the patronizing tones of the women commenting on the couple who were right in the midst of othering the couple as maybe needing to be brought up short with the fact of the adulthood of the couple in question.

Advocacy against the subtle and not so subtle ableism that rides behind and against adulthood, sexuality and the right to be respected and it cloaks itself in words that turn the everyday into clinical terms 'inappropriate' the word that has been used to bludgeon people with disabilities into submission, 'unprofessional' another tool to target those who work towards freedom and respect for the people they serve.

But in the end.

I think the video is funny.

I think the video makes it's point.

I think the actors had a blast making it.

I'm good.

Ruby's Ooops

Diversity!

Difference!

Disability!

These words have been in my vocabulary for a very long time. I live those words, I love those words. I think each of them as something that adds to the very fabric of what we call community.

I notice, particularly on Facebook and other social media, that the call to express your truest self, your deepest self, your unique self, is strong. There are memes about each of us being different and these are presented either as funny, but serious, or as assertive and aggressive. Either "Ha Ha Look at me, funny, silly unique me," or, "This is me, damn it, and you can like it or lump it." Those memes and the comments about them seem to really declare our love of our own difference and a claiming of difference.

Hmmm.

I have always thought that the deepest fear we each have is that we are deeply ordinary thus the internal pressure to find something, anything, that we can cling to and say 'This make me uniquely me.'

So I cry 'Difference' not with shame but pride.

Here's the thing.

Kids hear us.

Ruby has heard me blather on about diversity, difference and disability her whole young life. In fact everyone in her life has expressed an honoring of difference and diversity and disability. Those are the messages she has gotten.

And, exactly how well did that serve her?

She tells a story about going to camp with a bunch of kids. They did an activity wherein each child was given a piece of paper with one of the group members names on it and they had to write down a statement about what they liked about them. So the papers flew around the group, each child pausing, writing, and passing along.

For one of the children, Ruby wrote, "You are different," she read it again, she thought of it as a really positive thing to say, but in her ear was a warning, there was something telling her that this might not be taken the way she meant it, so she added "... in a good way." She felt a bit silly doing that because different was just different, not good or bad, but for safety and clarity she felt better adding those few words.

The reaction?

Not positive.

It seems we want to declare our own difference, we may not want it pointed out.

But, then, why?

If we truly live a mile past shame's house, then difference is just difference, something to be honoured and claimed. But many memes fall apart when tested in the real, not virtual, world.

Difference is not honoured on the mean streets of our community.

Difference is a slur used to belittle others.

In the safety of the virtual world, it's what gives us cache.

How sad.

It's the real world that needs to claim the difference that each of us have and in the real world we need to claim who we are.

Differences and all.

Go ahead and call me different.

I'll thank you for it.

Joe

Yesterday evening Joe did something, that he always does, and it annoyed me as it always does.

But lets start with the morning.

Two nights ago, the day before yesterday, Joe sat down on the side of my bed and told me that he had been experiencing shooting pains just under his rib cage for several days. I lay there, incapacitated by the news and the realization that he'd not mentioned anything of the sort for all that time, listening to him describe deep, sharp, pains that were almost unbearable and which had been increasing in frequency.

The reason he had told me was that, as we had the girls for the weekend, he wanted to go to emergency on Monday. We had planned to go to the ROM spider exhibit and the kids were looking forward to it. He thought the next day we could go to the hospital.

That's not what happened.

I called Marissa, we arranged getting Joe and I to the hospital and back. She would come straight from her over night shift and pick all of us up and drop us off and come back with the girls to get us once we were done.

After checking into the hospital and moving from waiting room to waiting room, Joe had been down for three tests. On our way back from one of them, I heard the nurse, on the phone, arranging yet another test, a big, expensive one. My mind went into deep panic. Let's not kid ourselves, I was panicked from the moment he spoke to me. I am the one that gets sick, albeit not for a long time, in this family.

We waited again for the final test and were told that we'd see the doctor in about an hour. By then we'd been there for about 4.5 hours. We chatted and talked like we were waiting for a movie, met and chatted with people in the same waiting area as if this was one big social event. But it wasn't. It was our way, all of us, from keeping worry at bay. It didn't work.

I can't worry small stuff, I worry big stuff only. I'm good at catastrophe so that's what my mind automatically does. My tension goes through the roof and the pictures in my mind are drawn from every medical show I've ever seen.

Finally we were called into a small area and Joe's going to be fine. It's nothing serious and we went away with a bit of advice and a prescription.

It was done.

I fought tears for much of the day. The sense of helplessness and the realization that I could do nothing to help combined to grab a cold fist around my heart. It took a couple of hours for me to calm down. Joe too relaxed and we had a fun evening with the kids.

So when Joe did his annoying habit that he's been doing for years, I realized, I'm glad he's with me, annoying me, that's the best possible outcome.

________

PS our hospital was wonderful in the way they reacted to us being a couple and being married. Once that was established there was no question about me sitting in, accompanying Joe to different parts of the hospital for tests, it was all good. We both remembered the days when LGBT people could not visit their partners in the hospital because they weren't family. We were recognized and treated as a legitimate family from the moment we arrived. Thanks to Southlake for that.

Phone Calls

So we're planning a trip, an actual vacation, and I'm getting myself familiar with the area from a visitor's perspective. I've been everywhere that I'm going before, but always for work, this time is for fun. Any of you who use mobility devices know that travel for fun is, quite simply, work. Websites still refuse to mention accessibility for the most part, or if they do it can be really hard to find, so I have to make a lot of phone calls. Let me present one of the calls to you.

Hi I'm calling to find out if your attraction is wheelchair accessible.

Yes, it is.

OK, to be clear, I'm actually in a wheelchair. Will I be able to get in all three of the attractions.

No.

Which one is wheelchair accessible.

Well, none.

Why did you say it was accessible?

Because I didn't want to make you sad.

And another:

Hi I'm calling to find out if your site is wheelchair accessible.

Yes.

So someone in a wheelchair can get in.

Yes.

You are sure.

Yes.

Can you list the attractions that I can actually get into and enjoy.

Well, there aren't any.

But you just said ...

... (cuts in) it's wheelchair accessible, you can roll around the attractions but you can't use them. But we sell our wheelchair customers a lower fare ticket because you can't use the attractions.

But I can watch.

Yes.

So you have a 'Voyeur" ticket price.

Well, I wouldn't say that.

You also didn't say that it wasn't accessible.

It is sir, you can get onto the grounds you just can't access the ...

(sound of me hanging up)

That, right there, those two calls, that took my energy for that day, today, I'll try some more places. I wish disabled not welcome places just say that on their websites, a little wheelchair person with a slash through it, this is my time that you are wasting.

Dust

From my eyes, the view is quite nice. I see my life clearly. I see purpose. I see love. I see meaning. From my eyes, I see straight ahead of me, I see the journey that I'm on, I see the battles to be fought, I see the joys to be had, I see moments of play, I see moments of frustration, and they are all headed my way. From my eyes my life is just my life. I'm lucky to be happy with it. From my eyes, I see what tasks were crafted for my hands only. What a privilege.

It startles me what so many other people see, when they see me. When they look into my eyes they don't see the reflection of journey to come, they see the reflection of something much different, much sadder, much lonelier. When they look at me they see a body and a chair. When they look at me they have their own narrative about what that means. They have assigned that image unshakable meaning.

"So sad that you are confined to a wheelchair, it must be so hard," said to me by someone who knew that I lived in Canada and that, at the moment, was in another country. That's not very confined. They had never left their state, not gone but 50 to 60 miles from where they grew up. But in their narrative, I'm confined. It suits them better for some strange reason. I try to explain the wheelchair as a vehicle for liberation. I meet dead eyes.

Watching a clip on Facebook of a young girl who is an astonishing gymnast. She has one leg and uses a prosthesis to enable her to participate. The narrative used to present her was that she hasn't let the prosthesis stop her from accomplishing her goal. I harrumphed at her story being stolen from her. The prosthesis exists to make her dreams possible. It does nothing to hold her back. Without it she'd not be doing what she does. Why is her journey and her story not see from her eyes.

What we see, as disabled people, when we see our lives, seems to stand in harsh contrast to what people see when they see our bodies, our disabilities, and enabling adaptations.

Part of the reason I write this blog is simply to remind myself that my journey is my journey and my life is my life. To remind myself that I don't live in the reflection of another's eyes, but I live in the world I see from mine. 

We have barriers, as disabled people, both attitudinal and structural, but we also face barriers when trying to tell our own stories, to have them heard and understood. We have been mythologized into sad creatures who do well to gather dust. As we fight for a world that's accessible we also have to fight to be seen, really seen, and to be heard, really heard, because it matters that we are real, vital, people who never, ever, ever, need dusting.

Feeling

After seeing that man with Down Syndrome take control of a situation wherein unwanted touch and belittling attention was plied on him, I left the situation feeling ...

and that was hard to say ...

... don't yell at me but I was inspired ...

... I was also really moved by his steadfast refusal to be the 'happy, huggy, Down Syndrome' guy they wanted him to be.

... I was impressed at the mere idea that someone had taught him these skills and ensured that he was able to use them in the real world.

All of those were true.

But that wasn't it. Deep down, that wasn't it. I sometimes have to go past my brain which tells me what I saw and assumes what I feel and get down into where my feelings generate.

I felt stronger.

That's it!

I felt stronger.

This is something I think we can do with each other as people in general and disabled people in particular. Seeing another's strength, hearing about it, makes us stronger, as an individual and as a community. You realize that that couple may never approach a person with Down Syndrome with the certainty of a 'hug outcome' again. Rah him He made his community stronger. He made my community stronger. And yes.

He made me stronger.

Tell stories of strength.

Create narratives of power.

Acknowledge reality but hammer it home when a triumph comes your way.

I need to hear it.

We all do.

A Man At Work

Just as we were finishing our lunch and I was popping the last of the burrito into my mouth, an employee came into wipe down the tables. He was quiet and unobtrusive and I didn't notice, either by his behaviour or the behaviour of others, that he had Down Syndrome. He just quietly and efficiently went from table to table to table.

Most of the customers seemed like regulars and took absolutely no notice of him. I can't emphasize the degree of welcome and acceptance that comes with anonymity in carrying out acts of everyday life. He was just doing his job. They just let him do his job. Several nodded to him, he nodded back, but that's as far as it went.

Then into the food court comes a young woman, with her boyfriend, who noticed him big time. Suddenly he was surrounded by patronizing, childish tones about what a good job he was doing and about how proud they were of him. He looked mortified ... not pleased to be centered out at all ... mortified. When the woman went to hug him he stopped her.

"No," he said, "I'm at work, you are a stranger."

She pressed on and he said, "No, I am a man. I am not a child."

They were, predictably offended. They told him that they were just being nice.

He said, and shock ran through my soul, "It doesn't feel nice, it feels disrespectful."

Then they were gone. During this whole thing, several in the food court turned to watch, it seemed like they all had his back, but they didn't interfere, they let him handle what came his way.

One of the women in the food court, one he had nodded to, fist bumped him on the way out.

Then he went back to his job.

Quietly.

Efficiently.

My Burrito

While in Atlanta Joe and I went to a shopping mall. We wanted to see if we could pick up a few gifts to take home for the kids. As we wandered around we decided to head to the food court for lunch. We got there and there were only three or four vendors.

Joe decided on Chinese because they had a picture of a tofu dish that looked good. I had decided on a burrito that I would get from a different vendor. I waited with Joe as he placed his order. When he was done, the woman behind the counter said,, "That's two orders?"

Joe said, "No, it's just for me."

She became visibly upset, "What about him?"

Stunned by the question, he said nothing for a second and she launched in again. "What about him, doesn't he want an order too?"

I spoke up now and said that no I didn't want an order, I was going somewhere else to get something else.

When I spoke she literally seemed to jump out of her skin. Her eyes widened. It was like she'd seen either a ghost or a puppet speak unaided. Then, "So, that's two orders?" she said turning back to Joe and trying to understand what one person and one non-person would want for lunch.

I just gave up and told Joe I was going to go order my burrito, I rolled over the the Mexican place and placed my order with no difficulty at all. The guy let me choose without question or comment what I wanted wrapped inside. It was easy.

In his presence I felt fully human again.

I wonder if people realize that disabled people do have feelings and sensibilities in relationship to what happens around us. I can leave a situation feeling like my humanity, my personness, has been diminished or I can leave a situation feeling my humanity has been affirmed.

And yes.

Someone listening to me, without commentary, as I choose what I want in a burrito is enough to make me feel like a welcomed fellow human.

Disabled people don't ask for much.

But it seems hard for many to get the word 'people' after 'disabled.'

Another Jump

Yesterday, a little later in the afternoon, we decided to pop into a grocery store to pick up some fruit. As to the heat, well, I've decided that I have to be a really good person and follow my faith because I surely would not cope with hell. I noticed a car pull by us driven by a man about 20 years our senior. His wife, around the same age as her husband, sat beside him. Their windows were up tight and you knew that the air conditioner was running full blast.

We found parking at a disabled bay and turned in. I saw the old guy pull his car up right in front of the store. Then he opened his door and got out. I thought, smiling to myself, that he was getting out to open the door for his wife and then he'd go park the car. He rounded the back of the car and headed into the store. I had to admit to disappointment. 

His wife opened her door and got her feet out but sat, in the blasting heat, with her feet on the pavement. She didn't seem rushed or hurried. Then her husband came out with a grocery cart. He walked up to her, turned the cart around, then helped her stand. She was using the grocery cart as a walker to steady herself. She kissed him on the cheek and then he came back round the car and got in and drove to park.

She walked slowly and steadily, holding on to the cart for support, into the grocery store.

I felt a bit ashamed for how quickly I judged him. I had in mind what I thought he should do, or would do, but I had no idea what he needed to to. They had worked out together a solution that works for them. He hadn't callously left her behind, he made it possible for them to be together and do things together.

See that conclusion floating in sea waters down amongst sharp rocks? Hear how it calls to me? Why the hell do I keep jumping?

4 scenes: 1 day

One:

We have rented a car that only a few months ago I would not have been able to get in. It's much taller and therefore it's a lot more difficult for me, but the thing is, difficult is okay today if yesterday was impossible. So I'm getting into the car and I get advice.

"I think you shouldn't have bought that car, it's too high for you."

Two:

I'm pushing into a movie theatre from a spot far, far away. All the disabled spots are taken, the lot is nearly full. Joe had offered to drop me off near the door but I thought I could use the exercise and we were in the middle of a conversation I wanted to finish. I'm pushing my way towards the theatre. It's hot. It's wet. It's like nature has draped a hot, wet, shawl around my shoulders. I'm sweating. I get some advice.

"I don't think you should be doing that, a man your size, it's too hot."

Three:

We stop at a grocery store to pick up some things for the trip. I've wandered away from Joe who is buying dish soap. I see something I want and I put it into the bag on the back of my wheelchair. I heard running, I get some advice.

"I don't think you should be doing that, shoplifting raises the cost of stuff for all of us. Put that back or I'll call the manager."

Four:

We go to dinner at a pub across the parking lot from where we are staying. We order, chat, eat, chat, then pay the bill and get ready to leave. Joe goes ahead of me and holds the door, a man bursts out and pushes Joe away, telling Joe that he'll hold the door. Joe is shocked and befuddled. As I go by he gives me advice.

"I don't think you should be out by yourself, what would you do if you needed help?"

Living with a disability = Living at the blunt end of other people's opinions.

Seriously.

Shut up.

What He Said: A Moment To Remember

We don't know the Atlanta airport at all. Thus we ended up stumbling around a bit trying to find our way. We wanted to get to the car and get going because we had a long drive ahead of us. Finally we were pointed in the right direction and found ourselves the first in line for an inaccessible bus that was heading to the rental car centre. We asked the driver about accessibility and he told us to just wait for a second and he sprinted off coming back with a very friendly and helpful woman.

She told us that she had called for one of the accessible buses and that it would be there in about five minutes. She explained that the older buses were not accessible but the new ones were. I was skeptical, not having much luck with buses in the past. But sure enough it showed up and pulled over to the curb. The driver opened the door, asked us to stay back, and then she engaged the ramp which folded down enabling us to board. This was all still theoretical to me because I was wary of the turning space and then the ability to maneuver my chair into it's assigned space.

They offered to help me up and respected me when I said that I wanted to do it on my own. With the folded out ramp continuing to a ramp inside, there were two differing slopes, the first grade was easy the second much harder. I gave the chair a strong push going up the steeper grade and felt it tip back slightly, felt the anti-tip bars engage and in a second I was under control again. I made the turn in, rolled down to my seat and backed in without a problem.

It was great.

My first good experience on a bus as a wheelchair user.

Here's the interesting part and I hoped you kept reading because this post isn't really about that entry onto the bus, it's about getting off the bus. We arrived and the ramp was engaged and I easily slipped into place and got off the bus. There was a crowd of people there waiting to board. The driver asked them to wait and then hopped into the bus and pushed whatever button that causes the ramp to disengage and turn back into a step.

While she was doing this and the ramp was moving she couldn't hear the non disabled people, all with their luggage on wheels calling for her to leave the ramp down. One man, a tired looking, sweaty from travel, businessman was almost frantic. He wanted the ramp down. But it was put away and people were getting on, all having to lift luggage of some kind. He got to the door and said, nicely, that he could have used the ramp.

Others around agreed.

He looked at me and said, "You guys fought for this, but everyone can benefit, so thanks."

Okay.

That was the first time that a non disabled person has ever even hinted at an understanding that, first, we fought for access, and second, that access is universal.

I'm still in a bit of shock from the remark, and don't really know what to make of it.

But then, sometimes I think it's okay to just enjoy the moment.

So, that's what I'm doing, here in the hotel, hours later.

They Never Mentioned

We had gone over to the mall to have a very late lunch at the food court. The mall was packed, it being a cool spot in a very hot day. I was lined up to get my salad, yeah it depresses me too, when I noticed another wheelchair user in a different line up. He was young, maybe 28, and he was with his young daughter who kept him very busy. She was on his lap, then swinging on his wheel, then getting behind to push when the line was moving. To her, dad and his wheelchair, were simply part of her world. Oh. My. And when she looked at him, you could tell, she loved her father. Oh. My. And when he looked at her, you could tell, he loved her.

We found a table just as dad and daughter arrived at the front of the line. Then I saw him turn his head and look down past us and his eyes lit up and a smile broke his face into sunshine and then into view came his wife and two other daughters. She kissed him, his wife, when she arrived and then they ordered. Each of the kids, freshly squeezed, by their dad, played while they waited. Once the food ready, he placed the tray on his lap and wheeled himself over to a table following a child determined to pick where they would sit.

It was so lovely to see him and his family just being out and being family.

But, then, we are never 'just out' are we?

I was not the only one who noticed. The whole food court noticed. And stared. I know, I know,I should talk, but I promise you I just glanced. Conversations turned away from the weather, and you know how hard it is to get Canadians to talk of much else, to him and his children and his wife. It was like they'd never seen a family together before.

Questions about the wife swirled in the air. Why would she 'waste her life' or 'put up with the burden' or 'have to take care of 4, not 3, children? No one mentioned love.

No one mentioned love.

They mentioned his disability. They mentioned their irresponsibility for having children. They mentioned money, whose the taxpayers or their hard earned cash. They mentioned the poor children who would never get to really play with their father.They mentioned a lot.

But they never mentioned love.

They never mentioned seeing his eyes light up and his face shine at the sight of his wife and children.

They never mentioned the kiss.

The kiss.

I wonder if he knew, they knew, that they were having lunch and confronting bigotry at the same time. I hope not. Not right then. Not right in that moment. They have a right to simply be in their world with each other and barricade themselves from the attitudes of others.

The never mentioned ...

... love

... and that kiss.

Threatening the Cashier

So, after having my cherries tossed, by a stranger, onto the conveyor belt, I felt annoyed. Why do people presume to enter into my life? But that line of thought was knocked out of my head by the customers ahead of me. One of them, a woman of about 30, was shouting at the cashier, a woman in her late 60's. The cashier had asked them if they wanted help getting the groceries to their car. This is a standard question, we get asked it all the time. We simply say 'no thanks' and we're done with it.

But the younger woman took great offence to being offered and began shouting at the cashier, threatening to report her to the manager, threatening to get her fired, threatening a 'well deserved smack in the face.' The cashier looked shocked, at first, and then just really tired. When the woman had left, I saw that the cashier was really upset so I said, 'if you don't mind, I'd like to say something, but I can just shut up if you'd like.' She waved her hand, I think still too emotional to speak, I said, 'You didn't deserve to be spoken to that way, you did nothing wrong. I saw the whole thing. You did nothing wrong. I'm sorry that happened to you.'

She smiled and said thanks, she then tried to explain to me that she just was offering like she offers everyone, and by the way did we want help? We laughed and I asked if I should speak to someone. She thanked me but didn't want to put me to the bother. Just then a store manager walked by and I called over to her. She came quizzically, preparing for the worst. I just explained what I had seen, explained the explosion and the threats made. I testified.

I testified that the clerk had kept her dignity throughout the attack.

I testified that the clerk hadn't done anything to warrant the reaction.

I also stated that I didn't intervene in any way because I already thought it was too explosive and, as a wheelchair user, was trapped, with no escape.

The manager thanked me for speaking up.

The clerk was moved that someone did something.

It wasn't much.

But it helped.

I think because, I asked her first.

Thieves

We forgot the yogurt for the cucumber soup we were going to make.

I remembered halfway through the unloading of the cart. I sent Joe off to get it and said that I would continue unloading the cart.

These particular carts are a little hard for me because they are quite wide and the reach necessary, when I seated by the cart in my chair, is a bit long. I have to really stretch to get everything, but we'd just come from the gym so I was feeling pretty limber.

I was reaching for the last bits, a bag of cherries, a bag of grapes and a bag of plums. I had just plopped the plums down on the counter and was reaching to the way back corner, it's a tough reach, and when I was almost there, someone glided by my cart picked up the cherries and reached over and pout them on the belt for me.

She was startled when I said, "Why do you need to do that?"

"What she asked surprised?"

"Thieve from me."

"What?!"

"Why are you taking my independence away from me? Why do you need it? Why do I have to be helpless? I need to do things on my own. I need my own sense of my independence and you took that from me? Why? Why do you want me or need me to be helpless?"

"I have no idea what you are talking about."

"I'm sure you don't."

And it was over. I could have tossed the cherries back and then done them again, but I didn't. You can't claim back a moment that was stolen by another.

Thieves they are.

Thieves.

Ready

For the last two days Joe and I have been tucked up at home doing nothing but watching Netflix and napping. I haven't left the house, once, Joe went out each day to get the newspaper, not because we were low on news but because the papers have crossword puzzles. And that's it.

Partly this was because we both knew we needed rest. We've been travelling hard and have been all over the US and Canada in the last few months. For me, I kept in touch with my work for a couple of hours, at least, a day while away and returned to work immediately upon landing. I'm not complaining, this is what we do. But we were both really tired. We thought of all the things we could do with the time off that comes with the Canada Day weekend and then, we didn't do it.

I do feel more rested. We achieved our goal, I think.

But there's something else too. Travelling comes with it a sense of being 'out there' in a manner, for me, which can be bruising. Pushing through airports means being in a place where everyone is in a rush and everyone needs to get by you and everyone's need to get somewhere surpasses your need to get there too. Taking up space, public space, as I push myself from place to place gets me the requisite glares and comments and, sometimes, outright hatred.

Being in hotels with people who are not normalized to seeing fat disabled people as part of the crowd, also brings with it the joys of having your food looked at and evaluated and the click, click, click of calorie counters is almost audible.I often order breakfast for Joe and I while he loads the car. Sometimes he's a little delayed and the horror and the anger that I see on the faces of others when two plates of food arrive sometimes frightens me.

Simply pushing on sidewalks or in malls or in grocery stores where I have never been before and will never be again, reminds me how difference is unwelcome and therefore, so am I. The names called out. Random strangers attacking random strangers with very specific purpose is, I'll admit, both tiresomely common and sometimes terribly hurtful. 100% of the time, when I go out, I will experience social violence - repeatedly.

Part of these two days, being cloistered in my own home, not leaving, has been for rest. We needed it. But part of it is to give both of us a break from the world and the constant experience of hatred.

I think of all those people with intellectual disabilities who are forced to go out into the community because its on the schedule even when they are clearly saying, 'no, I don't want to' ... maybe, some of the time, they are tired of it too. Tired of walking into a community that doesn't exist to welcome them. Maybe.

I know I needed this time.

During this last batch of travel I was bruised pretty badly, my soul ached for weeks. But, it's better now, I've kept it safe from harm. And I'm ready to face the world again, I'm up to the task.

I'm back.

(For those reading this on Facebook, please don't use the crying emoji, this isn't a sad post.)

Breathe: Canada Day

I've had difficulty writing today's blog. It's Canada Day today, and I am a proud Canadian, so this should be easy for me. Canada consistently is listed in those lists of the most desirable places to live and work. We have a reputation for being kind. We are, often referred to by tourists, as polite and our streets proclaimed as 'so clean.' Not ringing endorsements, but we are a diffident people.

My problem is that Canada got so much of it wrong, we treated Native people with violence and disrespect, it's hard to get on the high horse about pulling children from their parents when that's a part of our history with the residential schools. Not only that, we continue to get things wrong, we don't fix what needs to be fixed in relationships with our own people. We strive but never never manage to actualize our potential for truly human and humane greatness.

We wrap ourselves in quilts stuffed with smugness and sewn in conceit. We are Canadians and that, somehow, is enough. We have come so strongly to believe our own press that we have lost the will to press forward.

Being Canadian isn't enough.

Doing Canadian is called for.

Introspection that leads to corrective action, any corrective action of any kind is all it takes. I want to be Canadian in the way that my country calls me to be.

I am free.

I have a voice.

Those two things are remarkable. It's part of what it means to have 1 part per 1000ccs of maple syrup in your blood. I live in a country that gives me power and then, sometimes, hopes I don't use it. That I will simply feel smug because we aren't as bad as other countries might be, in our somewhat biased, polite because we'd never say it, opinion.

I am called by the freedoms given to me to be Canadian to act Canadian. To DO something!

We protest our past by offering healing in the present.

We protest our past by learning it's lessons.

We protest our past by, each of us, doing something about it.

I am Canadian. I love my country, enough to see its faults. I am Canadian. I love my country, enough to do something that results in healing, in acts of repentance, in a determination to live the freedom I have, in the fearless drive to use the voice I was given.

Silence happens in Canada when smugness smothers voice.

I intend to breathe.