Two Reasons

Some of the best things happen just because they should. I have no idea how I came to know about the seminar 'Ableism and the Question of the Human' but when the flier fell into my hands, I immediately blocked off my calender. I was looking forward to it for a couple of reasons. 1) It looked awesome and 2) I seldom get to go to an event and NOT present. I wanted just to listen, to learn and to soak up the atmosphere.

When we got there I knew that I was in the right place. There were people with disabilities everywhere. EVERYWHERE. We all got in and got settled. I think way more people showed up than they expected because the room was packed. Jam packed full. That in and of itself is a wonderful thing. People came from across Ontario, from Ireland and even from Winnipeg.

I got to listen.

And think.

Listen some more.

Think some more.

It was incredible to listen to work from disability scholars who were producing works that were as insightful as they were radical. They took me to ideas that I had never thought before. They gave validation to some of my own thoughts. They held us all in rapt attention.

At break I ended up in conversation with a woman, new to the disability experience, and a woman born with a disability. We had a lively chat. Intimate without being intimate. We were able because we were disabled, to start in the middle of the sentence. Shared experiences will do that. It was freaking awesome.

I left feeling rejuvenated.

I left feeling less alone.

But more importantly, I left realizing that the fight, the daily fight, for inclusion and for access and for respect - is a good fight.

I always knew that.

But sometimes it takes a good reminding.

Layers

A woman was walking her child to school.

A normal everyday occurrence. The two were clearly close. He held tightly to her hand. She chatted with him, making him laugh. He might have been five or six years old. She stopped a the red light, waiting for it to change, when it did they crossed.

They were greeted with stares.

And looks of concern.

And rampant disapproval.

Why?

She was using a white cane, swinging it in a gentle arc in front of her.

People actually gaped.

Two took photographs on their cell phones.

The boy was wearing a bright orange vest, carrying a knapsack on his back. They crossed the street, turned the corner and were on their way.

She clearly knew what she was doing.

He clearly felt safe, his hand in hers.

But you could see, as thought bubbles appeared over each persons head, the various catastrophes that could have, might have happened. Heads shook. Some stared to see if the boy, too, was blind.

They saw everything BUT a mother walking her kid to school in the morning.

They couldn't just see that.

Of course they couldn't.

Because they had to layer over what was there with what wasn't there - incompetence, danger and, oh my God, chastity.

Those people don't have sex do they?

Those people can't care for children can they?

Those people shouldn't be allowed out alone, should they?

The boy was too young to notice the effect they had on the world around them. He will one day. I wonder if he'll tell her? I wonder if she'll tell him, in return, that of course, she knew.

And The Truth Shall ... Well, Maybe Not

I don't want to sound ungrateful.

I don't want to seem unmannerly.

I don't want to strike you as unappreciative.

But I want to tell the truth.

I'd like a day where I didn't have to say 'thank you, thank you so very much.'

I'd like a day where I didn't have to overtly show my gratitude.

I'd like a day where I didn't have to carry the burden of gratefulness.

But I'm afraid to tell the truth.

I was brought up to say 'yes, please.'

I was brought up to say 'no, thank you.'

I was brought up to show gratitude for what was given.

But truth is bursting inside of me, it will out.

Today I said 'thank you' to a clerk who moved a trolley, of stuff to be put on the shelf, dead centre of an aisle that I needed to go down. Others, those who walk, shifted to the side and went on their way. Silent. Not at all grateful for the ease of their passageway. Me? I waited for the clerk to come, labouriously unlock the wheels, and push the cart away. Then they looked and waited, for the gratitude to flow. And I said 'thank you' I like saying 'thank you' I like showing appreciation. But it was the thousandth time I've had to do that. I want to pass in silence. I want to simply go in and out. I simply want to do what others do, they take for granted, I take with gratitude.

Today I said 'thank you' to one in a stream of people who stopped to let me use the ramp. The ramp is right by three stairs. The ramp takes up about a quarter of the space - the stairs are wide an inviting. But everyone wants the ramp. Some run up it. Some jump in front of me, not wanting to slow their pace, not wanting to take the stairs. Some simply are oblivious to me, with no option, waiting for a break in the stream of people. When someone finally stops to give me passageway, they look at me, expectantly, and I say 'thank you, thank you very much.' And I do mean it. I really do. But sometimes I want to simply go up the ramp that was made for access. Sometimes I want the one option for me to actually be an option for me. Sometimes I want to silently ascend.

Today I said 'thank you' to a group of people standing and talking on a sidewalk. They stood, confident in their privilege to take up as much space as they want. They left a bare minimum of space along side. Others, those who didn't need extra space just slid along side. I couldn't. I stopped. I waited. I began to ask them to move, I was shushed. SHUSHED. I waited until the woman with the finger up, teacher to unruly student, master to servant, nobility to nobody, finished what she was saying. Then she looked at me, granting permission to speak. I asked them to move over so I could get by. They did. Waiting with eyes that waited for a signal, a sign, of my gratefulness. I said 'thank you' but I didn't mean it. But it didn't matter if it was meant. Some people are completely comfortable with the forced gratitude of the lesser - it's like oil to the flame of superiority.

I want to tell the truth.

I'd like a day where I could have gratefulness in my heart but not constantly on my lips.

I'd like a day where I could silently accept the gift of access, silently make my way in and out, down and through, across and over.

I'd like a day where I could feel what people feel when they simply expect to go where they want to go, do what they want to do, have what they expect to have.

Yes, I'd like a day like that.

Just one would do.

A vacation from the expectation that I live for the gratification of the needs of others to profit, in any way, from my needs.

I've told the truth.

But, oddly, it hasn't set me free.

Spontaneous Acts of Solidarity!

There are moments that I'm just really proud to be a member of the disability community. Really proud. When I mentioned this to a non-disabled co-worker she assumed that my pride came from the 'insperational' stories. The 'I climbed Mount Everest! If I can do it, you can do it!' kind of thing - which I hate holus bolus.

What moves me into a state of awe is when I see generous kindness from someone with a disability, to anyone, but also to others with disabilities. It seems that there can be a hierarchy within the disability community - I care about my access, not yours! I care about my liberation, not yours? There can be as much prejudice directed at one part of the disability from another part of that same community as there is from the general populace.

So when spontaneous acts of solidarity happen, I am moved.

This morning I was moved.

Andrea had left a comment on my blog about the radio program that I appeared on. She asked if there was a transcript that she'd be able to read. I admitted that there was not, I had in mind to ask someone to make a transcript so that I cold post it. Then, this morning in my email, from one of my readers, was the full transcript, it came with a request that I send it on to Andrea. I did so immediately.

I decided that I wanted to write about this and wrote to the person who'd emailed me the transcription. They wanted, needed, no acknowledgement.

So, for those who needed the transcript, here it is ...

David Hingsburger on CBC Radio Interview on The Confessional, Episode Five - "Faking It" edition.

Interviewer: You're listening to the Faking It edition of The Confessional on CBC radio One and across North America on Sirius satellite radio. I'm Chrissy Holmes.

Interviewer: Dave Hingsburger is an advocate and spokesperson for people with disabilities. In public seminars he teaches others how to stand up for themselves, but Dave confesses that a three-year-old girl named Ruby made him realize that he'd been faking a big part of his personality for years.

Dave said it all started at a poolside table at a resort in Walt Disney World, alongside his young friend.

Dave Hingsburger: So she came back to the table and I gave her a towel, and during the period of time that they would have been in the pool, another family had come and they were seated maybe four or five tables off to the side. And there was a mom and dad, and there was a young teenage boy, and then there was a little girl of around Ruby's age. And Ruby noticed that little girl, and she's very social, and she was glancing over at her, and she started making her way over. And as she did I had noticed that they have been talking and laughing but I hadn't been really paying much attention to it. As she was getting closer I was listening and I realized that what they were talking and laughing about, was me.

They were making fun of my weight; they were making fun of the wheelchair; they were using  words that I had heard my entire life: fatso, lard ass, pig face; they were making pig sounds. And they were finding it very, very funny.

Interviewer: So what happened when Ruby went over there?

Dave Hingsburger: As she got closer, and they saw her come from my table, they didn't stop. As a matter of fact I think they picked up a little bit. So when Ruby got close enough, she heard the words for the first time. And she looked over at me, and there were tears in her eyes, but I was very, very pleased she didn't cry. And she looked at them, and I, and she just planted herself to the ground. And she took a breath and she said, "Dave!" And then there was a pause, so she took a breath again and she said, "Dave," and she pointed at me and said, "Dave, Mine!" she said.

And in that moment she just, she claimed me. And she claimed me knowing who I was, but also knowing how I was seen by others. And she ran back to me and I gave her a big hug and I was crying. And it had some profound changes in my life and even in how I present myself to the world.

Interviewer: How did she make you feel in that moment?

Dave Hingsburger: I've been fat my entire life and I'm not just fat, like you know, when people say, "Gosh, I feel so fat," and really they just need to burp. Like I'm actually truly extraordinarily fat. Okay? And I'm also a wheelchair user. It's interesting people make a connection between the two, but there is no connection between the two. 

Every single time I go out into the community, every single time, I receive staring, people make remarks. Total strangers do remarkably cruel things to me, including today on the way to the studio. And to a certain degree you grow a bit numb to that.

I guess when that happened, and she said what she said, I understood that not only was it possible for Ruby to claim me, it was possible for me to claim me, in a different way.

Interviewer: Now, people who know you might be very surprised to hear that you were so deeply affected by this. Tell us why that is.

Dave Hingsburger: Well, I think it's a bit because of what I do. I have worked in the disability industry for very long time. And I work with people who have intellectual disabilities not so much people who have physician disabilities; I have published several papers; and I have written several books; and I give lectures on an international level. I think a lot of people who see me assume that there are certain things that are true because of what I do. And that is that I must be full of self-confidence, and that I must be full of self-esteem, and I must have those magical ingredients that apparently you are supposed to have if you put yourself in front of people.

And I don't think that most people know the degree to which it's a battle for me. I have extreme anxiety, particularly when I'm going to be lecturing in a place where I've never been before, because I know the moment that people come into the room and they see a fat guy about to give a lecture there is an expectation that it's going to be bad.

Interviewer: Do you feel that you'd been faking your confidence a bit?

Dave Hingsburger: Oh gosh! I still do, but less so.

Interviewer: How did that moment change you? What did you realize about yourself after that happened?

Dave Hingsburger: Let me answer that in a little story.

Two days later, I needed to buy some, some clothes, because I need lecture clothes. So I went to a Mr. Big And Tall. So I got in my wheelchair just in the door, and they had a bunch of the kinds of shirts that I wanted to buy hanging up on the wall. And, and the fella said well just point to the ones that you wanted. So fat people know how to dress. I mean we wear black, and we wear dark brown, and we wear dark green, and we wear dark gray. Fat people wear dark colors, and I've been told that my entire life. And that's all I have ever worn. And there was a bright, bright yellow shirt. And I asked the fellow if they had it in my size, and he said that they did. And he actually came all the way across the store, all the way across the store, and leaned down and whispered to me. He said, " It's yellow." And I'm like, "Yeah, I know." You know? So I bought the yellow shirt. I didn't think I'd ever, ever wear it. And then, when I was back home, I was going to be telling some people the story about Ruby and what happened. And I wanted her to hear me tell the story. So I wore the yellow shirt that day. And when I finished the story, she came and gave me a big hug. And she said, "It's like being hugged by the sun!"

And you know I now dress exactly the way that I want. I'm wearing a shirt today that actually has yellow in it. I don't care so much. You know I mean? I think, now  I'm totally okay with being seen. You know? I'm loved. I'm claimed. And it was wonderful that Ruby claimed me, but the next step was for me to claim me, and that's sort of what happened.

Interviewer: Dave Hingsburger lives in Toronto.

Ring Around Shoes

I remember, back in the day, how difficult it was to get used to a new pair of shoes. I wore Birkenstocks for most of my adult life, and, even then, getting a new pair threw me for a loop. Literally. I'd trip over them. I'd get blisters in them. It would seem to take forever to get the hang of hanging ten in my sandals. Thus, sitting down in a wheelchair, had a side benefit. I was no longer confined to shoes. Hosanna and hallelujah!

A week or so ago Sadie was having trouble with her shoes because they just weren't comfortable on her feet - she decided a ride with me on my wheelchair was the better choice.

An hour or so later Ruby announces that her feet are tired in her shoes so she made the, obvious, decision - she decided that it was time for a ride in my chair.

Joe, after standing for awhile on sore feet made a decision - he decided to rest his tootsies by sitting in my manual chair when I was riding in my power chair.

So it seemed to me that the chair had benefits that, though people would rather be dead than in a wheelchair, aren't often acknowledged. In this case, freedom from feet binding.

But then ... today ... I bought a new ring. I don't wear a lot of jewelry but I decided that I'd buy a ring that was on sale from a local store that's going out of business. Once paid for, I slipped it on my finger and out the door we went. Well, that's almost what happened.

Yikes.

My manipulation of the joystick on my chair changed completely. I had to actually THINK about what I was doing and where I wanted to chair to go. It was EXACTLY like wearing a new pair of shoes. Well, without the blisters.

For the next day or two, I'm going to have to try and get used to how the joystick feels with my new ring on.

And for the next day or two, I'm going to feel sorry for my two footed walkie friends who have to go through this over and over and over throughout a lifetime.

Poor dears.

The Confessional

Several people have asked about my appearance on the CBC radio's show The Confessional. You can still hear it if you go to their site through the link. There are three stories. I'm the third. Look for Episode 5, Faking It, and hit the play button. I'll let my voice be my blog for the day.

Missile

He was walking with a slight limp, and, he was heading straight for me. I was sitting, quietly, waiting for Joe to arrive. Maybe my size creates some kind of planetary gravity that draws people directly to me, this happens all the time. He sits down and begins chatting, almost like we had been only briefly interrupted rather than never acquainted. His story, at least is interesting, although I began to grow uncomfortable when I realized that he was there to make a point.

He is new to walking. He used to use a wheelchair, then he used a walker, then he used crutches, now he is walking with only a slight limp. Several years ago he had surgery on the bones in his legs and after that surgery and with hours of work with a rehab therapist, he was able to move into a walker. Three surgeries later, many falls later, he is now walking fairly comfortably. He still needs one surgery, which he hopes will fix his limp.

OK.

Great.

But he went on and on and on and on about how hard it was in the wheelchair to go to the bathroom, to wash his face, to get pen and paper when on a call to Rogers, yada, yada, yada, all the stuff that I would, obviously, already know. The story of the surgery was one thing, this was quite another. He wanted something from me. He wanted me to acknowledge that he'd escaped disability status, that he was 'moving on up' and, I think, he wanted me to envy him.

I told him that I was pleased that he was happier.

But I didn't envy him.

Not even a little.

I thought it was interesting that he could have chosen dozens of other people to talk to, dozens who would have been, I'm sure, inspired by his story. But he didn't want that, he wanted my envy. At least that's what it seemed that he wanted. He kept prompting me to say something like, "Wow, lucky you, wow, poor me for not being you."

I didn't.

I honoured his journey and what it meant to him. I just made it clear that his journey was just that: his. My journey is just that: mine. It's a simple concept.

In the end he fell silent.

Bored with his own story.

Frustrated because I only listened, which to me is gift enough.

Then someone else with a disability came in, riding a vibrant red scooter, he was up and on his way. He was like a need seeking missile - I felt relief that he'd gone and wished that there was some universal, secret, sign between people with disabilities that indicated - "Beware Something Odd Is About to Happen to You."

The Ride

Becoming a service user is an awakening experience for a service provider! At least it has been for me. This morning while waiting for the bus, I noticed that when it drove into the driveway, I looked carefully to see if I could see who was driving. It didn't take long for me to have a list of favourites, those I looked forward to riding with. This is a more diverse list than you might think. Some are chatty, some are not; some are morning people, some are not; some drive smoothly, some do not. My favourites, then, are similar only in the way they present themselves to me and the way they interact with me.

Similarly, when I get a driver I don't know or have never had before, I begin immediately assessing them. I assess them for a couple of things ... mood and manner ... predictors of how they may interact with me. And, man, do I want to be able to predict! There are things I prefer, routes that I'd rather not take, hints about the lane way beside my office ... things which I'd like to point out or ask for or inform about. But I've found that my input is welcomed only with those who have an interest in me as something more than cargo.

So this morning, getting on the bus, I did a quick check. Mood? Manner? And as I did so I began to think about all the people in service, all the children waking up to parents ... everyone who is dependant, at least in part, on the mood and the manner of someone in their lives.  Do people realize that there are those who assess them, those who are trying to determine if their day will go well or their day could go pear shaped at any moment.

Hmmm ... maybe those of us who have support providing or care giving responsibilities need to be the first to check our mood and our manner, maybe we need to realize that, in small ways, every day, we are being checked out - assessed. Our character and our dangerousness are being calculated to determine risk.

Because the one thing I have learned as a service recipient - in relationship with any service provider, of any type ... there is always risk.

Elevators

A few days ago someone sent me a link to this video:

I loved the video. I think the man has a truckload of talent and I enjoy watching people do what they love to do. What I found disconcerting though, was the number of people who have responded to this video by saying things like:

"I wouldn't call him disabled."

and

"Who say's he's disabled?"

They mean this as a compliment! I'll admit, I've had it said to me too. Usually as part of a compliment after I've given a lecture or in an email from someone who was moved by something I've written. I know I am supposed to take it as it's meant - the highest form of flattery. Like I've moved out of the class of beings who cannot and into the class of beings who can. Rah!

I don't take this as a compliment, however, I find it, in fact, quite insulting. Firstly, I AM DISABLED. Secondly, I'm OK with that. Thirdly, my status of being a disabled guy isn't temporarily lifted when I do something that someone else admires.

This may shock you but when I hear that kind of compliment, given to me or given to someone else with a disability, what I hear is the depth and breadth of prejudice and bigotry behind it. What it means is that the speaker, the compliment giver if you will, has such a narrow definition of what it is to be disabled that they cannot include in that definition what they have seen, what they have heard or what they have experienced. So instead of stretching their minds to include within their conception of 'disability' this new experience, they artificially 'lift' or 'elevate' someone with a disability into the status of someone without a disability - into the 'norm.' Yikes.

This doesn't just happen to people with disabilities, of course ... I remember hearing some guys talking about the first woman welder at the mine where I worked summers during my university years.

"She's just one of the guys."

and

"When it comes to welding, I don't think of her as a woman."

Um, but she is. She is BOTH a woman AND a welder. But we can't have that can we? That would mean that we'd have to reconsider what restrictions we have in our minds about what it is to BE a woman. Rather keep the stereotype and 'elevate' her into the status of 'honourary man.' I call 'bullshit!'

But then this also happens in reverse.

When I wrote about the woman who sat in my wheelchair someone commented that the woman must have had a disability or some other "difference". It's like the definition of "normal" can't include someone who is privileged, who is selfish, who is inconsiderate. Therefore, instead of stretching one's mind to include within the understanding of the length and breadth of of "normal" behaviour someone with negative characteristics, one simply "demotes" them into the "dis" part of humanity.

You see this all the time. When someone commits a crime, or when someone does something cruel, people interviewed, usually neighbours who blink into camera's and say:

"That's just not normal."

and

"She seemed so normal."

It distresses me that typical people are constantly encouraged to see themselves as being at the peak of evolution. They have no need to think about their behaviour, to think about the fact that "normal" includes cruelty and selfishness and unkindness. That "normal" people can bully and abuse and rape. That "normal" people need to be on guard against their own natural impulses - which aren't, no matter how much you may want to believe it, always towards charity and love and generosity of spirit.

That disabled people can be disabled and talented and that "normal" people can be mean and cruel should simply be obvious.

But it isn't obvious.

It's a challenge to how those with bias see the world. It's the essential ingredient behind ableism and disphobia. But then attitudes that have "disability" as lesser than "normal" are so ingrained that the minds of many have installed elevators ... not, unfortunately, to increase access ... but so that those who "inspire" can be lifted up from one status to another, and those that don't can be moved down.

Yeah, the guy can dance. Yeah, the guy has a disability. Get over it.

Inclusion Happens Over Time

Joe goes in first, to put my tea on the table we're going to sit at, then comes to open the door for me. Through the door then a quick and really sharp turn to the right then another to the left. It's a small room with tall tables lining both walls, except where the stage is, and though there is a natural pathway to the bar and the bathrooms at the back, it's often cluttered with chairs. People move the tables and chairs to fit whatever size group happens to gather together - this means that patrons need to pick their way by tables and chairs to get to the bar at the back, or to the washrooms at the end of the hallway past the bar.

The moment I enter through the door, or the moment someone recognizes Joe as the 'advance man,' chairs start to move and the aisle way is magically cleared. I get to my table with ease, I get to the bar with ease, I get to the accessible bathroom at the end of the hall with ease. Sometimes people need to scoot this way, or maybe that way, and some need to stand to this side, or maybe to that, but whatever, I make it to where I'm going, no muss, no fuss, no questions asked. It's nice.

It wasn't always this way. When I first went there, having heard there was a gay bar that was accessible, people didn't quite know what to do when I entered. Everyone was nice and all but there was a bit of chaos created as people figured out how I could get from where I was to where I was going. The first few times I felt embarrassed by all the manoeuvring that had to happen for me to get to a table and, god forbid, pee.

But because people were as welcoming as it is possible for strangers to be, we kept going. Now we pop in a little more frequently, because, of course, we've all learned to manage the space. Even those who have never seen me before do it naturally because they are prompted by seeing how the regulars make tiny adjustments. It's easy. Really easy.

It actually surprises me, now that we've all learned how to do it, how easy it is to do. It doesn't require more than a smidgen of adjustment. This chair turns that way, that table slide this way, I park a little off centre to make sure that people can pass me easily on their own journeys to the bar and bathroom. It's easy. Very easy.

We stopped by there last night on our way home from the movies. It was a little later than normal, there were more people there than typically, but we sailed in, found a spot, and got a beer. The owner knows I don't drink, he's totally fine with me bringing a tea in from across the street, so all is good. Joe hops up on a stool, I sip on my tea and we chat. With each other or with others in the bar. It's just a nice neighbourhood pub.

I'm not used to having people willingly and easily share space. I'm not used to being just another guy at the bar. My size, my chair, my tea, was noticed a few times and then, well, became uninteresting.

It's nice being a local at your local.

For me I'd say this is a case where familiarity breeds content.

Yesterday and Today

I shared a ride with a woman today. When I got on the bus she was visibly upset. The driver strapped me down, took my token, confirmed where I was going and then hopped back into the driver's seat. I looked over at my fellow passenger. She was seated in a light green scooter, wads of damp Kleenex were tucked into her purse which was itself tucked into the basket on front. I took a breath, deep down not wanting to do what I was about to do, and asked, "Are you OK?"

She told me that she was facing a decision about her dog. He had been her loyal companion and he was still her best friend. She told me that with the advent of her disability friends pulled away from her and her children sometimes made her feel like a burden. But her dog ... she cried when she said this ... "loved me anyways." She talked about him and told me stories about when he was a young pup and it was easy to understand how this dog had taken residence in her heart.

I told her that I understood how easy it was to bond with an animal. I mentioned my dog Eric and how much I still missed him. That's all I said, she understood that I understood and that was enough. The rest of the trip she mused out loud about the nature of relationships. Why some stay. Why others leave. Why children she carried resented carrying her groceries. She was terrified that, in a bare few days, she would discover real, true, aloneness. Tissue after tissue made it's way into her purse.

Soon we were at her drop off point. She got off, pausing at the door, and said, "I will remember your kindness for a very long time."

All I did was listen.

All I did was understand.

Sometimes that's enough.

That's what you all did for me yesterday.

"I will remember your kindness for a very long time."

Bull's Eye

This may be the most emotionally difficult thing I have ever written about; perhaps the most emotionally devastating thing I have ever realized. Bear with me as I try to put in words ... I wish I could write with text the colour of bruise.

Joe and I were nearing the corner, just down the street where I live, when there was a sudden commotion and then a huge bang. The sound came from a big bag of garbage hitting the post I was passing. It hit about three feet over my head and then split open. Garbage exploded from the bag and rained down on me. I was hit only by dry garbage, the wet stuff landed just in front of me and just behind me. Joe, who had been walking behind me because the sidewalk space, as I go past the post, doesn't allow room for both of us, was able to jump out of the way entirely.

People, who were crossing the street, all turned to look for the source of the sound, saw me covered in litter frantically trying to get it all off me. Their eyes then noticed the angry man yelling at someone out of sight. I turned the corner, finally free from the trash that had rained down on me, looked at the man and said "You threw garbage at me, I don't even know you, what the hell were you thinking!" He glared at me and said, "You should be watching where you are going." Then, because Joe was insistent that we not stop and engage him, it was over. So apparently I'm supposed to be on alert for bags of garbage flying at me. I suppose that, along with watching the ground for obstacles and watching out for pedestrians who aren't watching where they are going, I'm supposed to add 'flying bags of trash' as well.

Believe it or not, this isn't the bad part of the story.

Later, when we were in the pharmacy picking up medications, I was chatting with the pharmacist and I told her what had happened, I was laughing as I told her. She looked at me horrified, absolutely horrified. A fellow shopper, a tall thin man who I've never seen there before, overheard the conversation and joined in saying that what happened was outrageous and unconscionable and the two of them expressed surprise at my relatively calm telling of the tale.

I was calm.

And I was a bit surprised at the vehemence of their response.

I should have left it at that.

But no. That's not me. I have to worry it and worry it until I figure it out. Why wasn't I outraged? Why wasn't even slightly experiencing hang-over anger? Why didn't it really, really, really bother me? Or even just really bother me?

And then I knew.

And knowing hurts.

I am used to people throwing things at me. I'm used to people rolling down windows of cars passing by so that they can lean out to throw 'piggy piggy' sounds at me. I'm used being hit by trash, regularly, 'fatso,' 'lardass,' 'pigface.' I'm used to people throwing stares at me, I'm used to glances turning into lances and cutting me open. The other day it was so bad I had to touch Joe on the arm and say, "I've got to get out of here." And I fled home. Eyes down. I couldn't take it that day. I wasn't emotionally strong enough to be me and to be out and to be the easy target. That day, about twenty minutes before fleeing for cover I had waited in the record store near my place as Joe made a purchase and three women walked by, one glanced in the door and saw me and yelled out, "That guy in there is a big fucking horse!" The others, who had passed by without seeing me, were pulled back into view and then they all stood looking at me saying things like, "How the fuck did he get like that," and 'I feel sorry for the fucking wheelchair," I was right there I could hear them. I was right fucking there.

They fling, fling, fling shit at me.

The wheelchair made it worse. I didn't think it could get worse. It did. People attack my need of space, my need of time, my need of air. People huff and puff because it takes me a moment to back into an elevator. Impatience mixes with hatred to create a toxic mix - that I am expected to drink with a thank you on my lips. Attitude aims and prejudice pulls the bow ...

They fling, fling, fling shit at me.

And when I talk about it I'm told I'm too sensitive, I'm told that I am misreading what happens around me, I'm told that I have to be tolerant of people who purposefully hurt me because they don't know better. THEY FUCKING KNOW BETTER!! I'm given advice that would never work, I'm told by the teller that they would handle my life and my situations better than I do. BETTER!!! I am a fully employed, fully contributing, fully involved person who only rarely cuts bait and runs. BETTER??? I am in a long term relationship. I attempt to make the world better. I invade public space even when, every time I do, it's dangerous. I am no coward.

A bag of garbage exploding over my head. Trash flying around me and raining down on me. That's nothing man. That's fucking nothing.

I'd rather have a boxful of garbage burst over my head every day than experience what I experience each and every fucking day that I live. Every time that I go out.

Never once, not once, in the last 7 years, since I became a fat wheelchair user, have I gone a single day in public space without many someones engaging in social violence. Bullying isn't strong enough a word, it's social violence, plain and simple. Not one day. Not one fucking day. Not one. Ever.

"He's fat and lazy and that's why he can't walk," one mother explained me to a son who hadn't asked a question.

"You better be careful or you'll end up like him," one friend says to another ordering a doughnut.

"God, they shouldn't allow people like him out, it wrecks your day," says one passerby to another.

I CAN FUCKING, FUCKING, FUCKING, FUCKING HEAR YOU!!!!

But I know that they know and I know they don't care.

It doesn't matter because I don't matter.

So when that trash burst over my head, I was a bystander, an accidental victim of another's rage. And it was just a relief not to be the target.

Because I'm always the target.

Bull's Eye.

Space, Could I Have Some Please?

We went out for dinner. I scooted on ahead, carrying Ruby after a complicated negotiation had resulted in Ruby being carried to the restaurant and Sadie being carried back, to get a table. I arrived and two young men were acting as 'hosts'. They asked what kind of table I wanted, I said, "I don't care what part of the restaurant we are in, or if we have a view or not, I only care that I'm placed in such a manner where my wheelchair and I are comfortably out of the way." They nodded.

(You know where this is going already, don't you?)

The other's arrive. We are then taken to a table that's not a table, it's a booth. Everyone would sit in the booth and I would pull into to the table along it's edge. I immediately didn't like it. It was at the end of a row of booths and I would be clearly sticking out. I already, just by being, draw enough attention to myself, I don't need more. I said I didn't like it. So I was told we could wait at this table and then when they cleared another set of tables we could move. Would I like that, I was asked.

So now, here's the thing, great they were offering me a solution, not so great that they put me in a situation of having to move 5 people, including two kids, plus all the stuff we had with us. I'd made it clear when I came in what I wanted. I don't want to be a bother, I say, 'I don't like it, it's not what I asked for, but, no, we'll stay.' That settled that.

Five minutes later I'm steaming. It turns out that I'm not only sticking out, I'm in a high traffic area for the wait staff. They rush by me. One of the two men I spoke to on coming in, you know when I said I wanted to be comfortably out of the way, stumbles over the back wheels of my chair ... twice. Every time this happens I'm jolted in my chair, I can now picture someone going ass over tea kettles with a tray of food. Thing is it will be deemed my fault for being where I didn't want to be and asked not to be.

I.

Am.

An.

Intruder.

In.

Public.

Space.

So, after the second time he trips, I tell them I'm not happy being tripped over, I'm not happy in a high traffic area, I want to move. They set up a table, wipe it so sloppily that it's drenched with pools of water, and we move, trying to mop up the table with our napkins. No, we didn't leave in a huff, no, we put up with it ... the girls like the food there and I hadn't checked out to see if other, nearby, restaurants were accessible.

After we dry the table and get settled, we end up having a nice time together. I again, pack my annoyance in a box, set it aside, and enjoy the food and the chatter. Sadie does something funny that sets Ruby off on a riff that she found so funny that she could barely speak for laughing. It was awesome to watch the two kids play off each other that way and for all of us to be included in the hilarity. It turned into a nice evening.

But it took work.

And every time I have to do it, it seems a bit harder.

The Hostile Chair Woman

I was sitting in the shade of a tree gazing over a beautiful lake. It was lovely. I was enjoying a bit of down time between rides and splash pads and bouncy castles. Joe and Marissa were off with Ruby and Sadie doing something, somewhere. We had brought both wheelchairs. We've discovered that having the manual chair along is great for carrying stuff on the back and it's a good place for Joe or the kids to sit when they get tired.

I was sitting in my power chair and my manual was beside me, maybe a foot away. It had coolers, and other necessary stuff, hanging off the back. Other adults, also waiting, were sitting in other spots around me. It was kind of a natural place to wait or rest.

Suddenly I notice that a woman, in her thirties, had plopped herself down in my manual chair. I was horrified, "That's my wheelchair," I said. She looked at me with hostility, "Well, you're not using it are you?" I was aghast. I sputtered, "No, but it's still my wheelchair ..." before I could finish a fellow calls out to her, "Get your ass out of his wheelchair." She got up and left, huffing and puffing like there was a house made of sticks to blow down.

I still don't understand why she would sit in my wheelchair. I don't understand why she would presume to have the right to do so and to be hostile in response to information. My head had done a quick calculation which was ... no one would ever do this, maybe she thinks it's a random chair left around the park like you see at airports ... so I gave her information ... "That's my wheelchair." Her response told me that she either knew or didn't care. What she also didn't care about was my protest.

She got up and out of the chair because she was told to by someone else. Some non-disabled guy hollering at her to get out of my chair. My protest didn't matter. His did. In fact her response to his demand was almost immediate.

In the end I was upset that she plopped herself down in my wheelchair. I don't know how other's feel about their wheelchairs but mine is mine. I have no problem with my very close friends or my very close family sitting in my chair, but no one else and certainly not without permission. Heck, even Ruby and Sadie ask if they can sit in my chair - and they are kids!

But I was also annoyed, a bit, with the fellow who took over the interaction and spoke for me. True she valued his voice more than mine, but still I can fight my own battles and I don't need rescuing. I am pretty confident that, once I'd realized that I was dealing with someone who had done something purposeful, not accidental, I was ready to ramp up the interaction. I would have, I think, been able to make my voice heard.

Then the kids were back laughing full of stories of what they'd done. I used their laughter as a remedy to stop to ruminations in my head. It was time to get back to fun.

On The Radio - Blog Announcement

Hi all, just to let you know that I will be appearing on 'the confessional' a CBC radio show, the 22nd of July at 7:30 pm ... it's on CBC Radio One. You can listen on line at cbc.ca/theconfessional , if you get the chance take a listen and let me know what you think.

Today's post follows.

Intruder

It may be a really, even ridiculously, small moment.

But it mattered.

As I've been fat all my life, I've always been aware of my size and the space I take up. As far back as I can remember in school other kids, skinny kids, would press themselves up against the walls in passing me, indicating that there was barely any room to get by me. This was considered very, very, funny. I got the message. I take up too much space. As a result, I am always very aware of space, always alert to where I am and what space is around me - not for me, but for others. I have always felt like an intruder in public space.

This was magnified when I became a wheelchair user. People throw themselves out of my way on sidewalks and pathways even when there's lots of room. I have never been able to figure out if they were simply unable to see the space that was available to them or if they were continuing the commentary that was begun in grade school - continuing to let me know that I take up too much space.

A habit began very young. 

I apologize. Sorry, sorry, sorry, sorry ...

I explain. There's lot of room, there's lots of room, there's lots of room, there's lots of room ...

I.

Am.

An.

Intruder.

In.

Public.

Space.

A moment - I was just off the little bridge on the boardwalk. I was turned around and looking down into the pond. Marissa and the girls, along with Joe, were lined up along the side of the bridge, also looking into the pond. There were several ducklings swimming about. The girls were captivated. So were the rest of us.

I heard the sound of a bike coming and I looked up and saw a woman several feet from me. Even though there was lots of room, I began to move my chair to create even more. She called out, a smile in her voice, "It's OK, there's lots of room."

Tears sprang to my eyes.

That doesn't happen to me.

A Handy Fellow

Yesterday I played pick up sticks. I played the game Operation. I went kite flying. I wandered along the boardwalk and stopped to watch the ducks and ducklings in the pond. I raced two little girls until one said, "I'm tired, I'll ride with you and you chase Ruby." I ate hot dogs and played an odd ketchup game. I was the hero who found a place that sold ice cream after dark. It was a good night.

And I feel terrific this morning!

We are up in Gravenhurst where I have meetings over the next couple of days AND, when not doing that, Joe and I will be doing stuff with Marissa, Ruby and Sadie. We love being up here and its really a great place to bring kids. Marissa and I sat and chatted, last night, sitting on the boardwalk while we heard the girls and Joe laughing and talking as they explored the piers. That's living, real living.

This trip is a little different though because we found a company that has wheelchair vehicle rentals. We called them up, booked the MV1, they delivered it to our home, they will pick it up when done, and now it's parked in the parking lot. My power chair is resting from it's vigorous exercise last night and all is good. Having my power chair here has already changed the experience tremendously.

When the girls were kite flying, running as fast as they could, kite flying high after them. I was assigned to run along side them to provide assistance for when the kite crashed and to ensure that they didn't run somewhere dangerous. I discovered I'm good at kites. I didn't know. In the grocery store, where we all met before going to the hotel, I had the girls with me, alone, for a good period of time. I think they know, "Dave loves shopping," and for a kid, an adult who likes to shop is golden. We went and picked flowers for the room, we stopped in the cookie aisle and debated the best cookies to have on hand - we ended with a delightful selection. When we ended up meeting up with Marissa and Joe, I had the truly important shopping in my arms.

After my meetings today we'll be going to Santa's Village which will be a very different experience in my power chair. I know I'm going to be cured of any need to hear Jingle Bells or Rudolph for the next million years but it's going to be fun and the girls are wildly excited.

After our walk yesterday, Sadie was explaining to Joe how when she got tired she got a ride with me. She didn't realize I was behind her listening, it was great to hear her say to Joe about me, "I'm glad you brought him along, he's handy!"

So there you have it. I'm a handy guy to have along, you have it from an unimpeachable source.

Reflecting

Sometimes the hardest thing about needing help is needing help. After years of being in the role of 'helper' I think I can say, with some authority, that the burden of needing help is greater than the burden of giving it. Giving help puts one in a position of 'gifting', giving help elevates, even those paid to do it, into the position of benefactor, giving help gives power. I've written a fair bit over the years about power and the fact that those in support providing roles need to be ever vigilant in their exercise of that power. But, the message behind that is that support providers get to be vigilant because they get to be powerful. Managing power begins, simply, with the fact that you have power in the first place.

Living with a disability means, for me, needing help. I think one of the reasons that people fear disability is just that simple fact. Needing something from someone else means entering into a relationship dependent upon, even when it's paid for, the good will of another. It means that every time one receives help - even graciously given - there is a relief that the asking's been done, the help's been given and, if you haven't been diminished in the process, you can simply move on.

For a long time, at work, when I'd leave my office to go to a meeting in the board room, I'd leave my tea on my desk. I couldn't carry it, I couldn't ask someone to take it for me, I'd just go without. Now, I always ask, people always help, it's never a problem. Occasionally, though, I'd wonder if people did it because they were nice, because I was a director, because they felt they had to, because they didn't mind ... the 'because' part of it sometimes would drive me to distraction. I knew I was over thinking something simple, but at the same time, it's not so simple. They get to manage their power while I am constantly learning to manage my powerlessness - these are very different things.

"Here, let me get that for you."

"Don't mind at all, really don't mind."

"No thanks needed."

They get to say those things.

I get to say ...

"Thanks."

"Thank you very much."

"How very kind."

It's better to give than receive is true because giving means something much different than receiving. The giver determines the gift. The giver controls the moment. The giver gets even while the gift gives.

She was crying. Hard. She had been referred for self injury. I had been working with her for about six months when one day we found ourselves simply talking. She told me of a moment, a hard, hard, moment, when she had heard her mother, on the phone, talking about how hard it was to have a daughter with a disability. How much work it was. How frustrating it was. How tiring the effort was. "I thought she didn't mind," she said through tears, "I thought she didn't mind helping me. I didn't know she hated it."

I've thought about that a lot over the years. I'm guessing, and of course I'm only guessing, that her mom was having a moment of her own vulnerability and was expressing that on the phone. I'm guessing that mom 'didn't mind' as much as it may have sounded at the time.

But I get how much that hurt.

Now.

Not then.

Needing help at home.

Needing help at work.

Needing help at all.

Means something.

And six years into living with needing, I'm still learning what that is.

Two

I can't tell you where this happened. Or when this happened. I have made official complaints to official bodies and am expecting an official response. I don't know if I'm allowed to talk about what happened, fully, during this process and I don't want to muck it up. I do want to tell you about an interaction that happened during the whole 'event'.

I was being barricaded from using the only accessible pathway to where I wanted to go. I was being told to do what I couldn't do, use an alternate pathway that involved two sets of stairs. I was loudly protesting that I couldn't do what they asked me to do and I didn't understand why I was being disallowed access to the accessible alternative. (I still don't.) One of the people involved was a security guard who was a black woman of about my age. She wasn't the person I was arguing with, she did not have the power to grant access, but she was carrying out the instructions she was being given by the powers that be. I could see that she was getting increasingly frustrated at the fact that I wouldn't shut up and I kept demanding to speak to those who could make alternate decisions.

At one point she made a comment about my behaviour and suggested I should quieten down. This sparked the following conversation:

To set the scene: Ruby and Joe were with me when this was happening, both of them off to the side watching.

Note: Ruby is not my granddaughter ... however, sometimes it takes way too long to describe our relationship so I use the word 'granddaughter' to shorten the discussion.

Me: What do you think my granddaughter is learning right now? Right now!!? Is she learning that people with disabilities have less options and that people can make arbitrary decisions to deny us our right to access?

Woman: No, she is learning that there are some rules that you have to follow even if you don't want to.

Me, incredulous: Is that what you would teach your granddaughter?? Really, is that what you teach her.

Woman: Yes, sir it is.

Me: You teach your granddaughter to be silent in the face of discrimination, to avoid conflict and accept what's wrong rather than speak out loudly and strongly. You teach her that?

Woman: I (pause) I (pause)

Me: I want my granddaughter to be Rosa Parks not Barbie! I want her to learn how to face down people who would stop her from having what's rightfully hers.

Woman: I ... (walks away)

A few moments later, she was back, she was on my side, and she helped me get done what needed to get gone, I still didn't get access but I did get a workable solution, not the best solution, but a workable solution. She ensured that those who were in power who didn't want me to have even that were told that I would have it, she would ensure that I would have it, that that was the end of it.

It felt like an important moment. Like a moment where two people connected on a different level. Two people who understood the struggle against oppression and bigotry - though both experiencing that struggle in different ways over different issues - both recognized an important bond.

It was like we became a coalition of two.

And that coalition was a force to be reigned with. One voice is just one voice but two voices is the beginning of a choir.

Two Women and What They Did

We all slumped into our seats. Early morning classes are loved by no one. The professor strode in with a canister under his arm. There was a slight buzz, it wasn't excited anticipation that we were going to see a movie, it was mutual relief that we'd be able to nap for a half hour or so. We didn't nap.

The movie was about syndromes. On screen a man in a white coat holding a pointer would talk about a particular syndrome and then another man, also in a white coat, would bring into view a naked person with that particular syndrome. Then, while talking, the pointer would point to various body parts as he discussed how the syndrome evidenced itself on the body of the naked person standing, looking at the camera with terror filled eyes.

Everyone seemed to think it was part of the natural order of things, they are the exhibits, we are the exhibitors; they the objects, we the objectifiers. The film disturbed me then, it's memory disturbs me now.

And this is was I thought about on Wednesday.

Joe and I were headed over to Ryerson University where I was going to meet up with a team of people who were going to present at the Disability Studies Intensive Summer Program. We arrived, went upstairs and then found the others waiting outside the room. Once we were able to get in, several of us chatted while the techie in the group worked with someone from Ryerson to get everything up and working. We all laughed a lot as we talked. It was a good way to get over nerves.

I had the easiest part. I was only doing a few minutes introduction, putting our presentation in context, and then the others would take over. I'd come back in for the question time at the end. After I was done, I rolled back to the back of the room and watched the presentation unfold. After about a half hour of talking the podium was handed over two women with disabilities who got up to demonstrate what was done and to talk a bit about its impact.

The subject had been the research that had been done to show the Advocates Against Abuse program had be successful. The program had set out to teach people with disabilities to teach people with disabilities abuse prevention skills. It had begun about 18 months ago and in that time, people with disabilities who had been interviewed and selected for jobs as trainers, had risen to the challenge, stepping by self doubt, and become excellent trainers. The research showed that those who attended learned what was being taught, but it also showed that they related to trainers with disabilities in a different way - there comments indicated that the fact that the trainers had disabilities made them BETTER trainers.

It's been exciting work and we are now at the point of presenting about that work. A few conferences in and the call came in from Ryerson's Disability Studies Program. One of the professors there had consulted with the team on the research design and therefore was aware of what was done. So, there I sat, listening and enjoying the presentation. And then something amazing happened. Two women with disabilities got up to the front of the room and began to teach university students. Many of the student were in the Graduate Studies program, all of them took notes.

It took a while for what I was seeing with my eyes to be seen by my mind and my heart. Here, in front of me, in a university, two people with disabilities lead the discussion - they weren't the subject of discussion. Two people with disabilities demonstrated how respectful teaching was done.

I thought about those people who were forced to stand naked in front of a camera, those who suffered the indignity of a pointer pointing at their bodies, those who looked at us beyond the camera with eyes that asked how we could sit and watch their abuse with academic calm. Nothing will ever apoligize enough to those men and women. But the moment that two self advocates got up in a university class to direct learning, to deliver content, to speak as experts, it was clear that something huge had happened.

The voice that had been denied those on film, spoke out loudly and clearly now. I imagine, because it comforts me to do so, those people, stripped naked and subjugated to the camera's eye, standing in the back of that room and seeing a miracle, something they wouldn't have suspected ... two women shattering the every myth that had made it possible for them to be at the end of the pointer.

It was a big day.

What's Really There

"Hey, how are you doing?"

"Fine, you?"

"Good."

A perfectly normal conversation, between friendly strangers, on a perfectly normal day. The only thing that is exceptional at all is that the fellow asking has an intellectual disability and the fellow responding has a physical disability. He works in a store that I frequent on a semi-regular basis and a couple of times I have asked him to help me out with reaching something. He's one of the few staff in the store who helps willingly so if I need help I typically go to him first. So we've become friendly strangers. We have a nodding acquaintance and, if I haven't been in for awhile, when he sees me we have a brief conversation.

The other day Joe and I stopped on a patio for a bevvy. Joe had a tall frosty beer and I had a cuppa tea. We sat under the shade of an umbrella and chatted. I didn't notice that my helpful store guy was there on the patio until he called to us, he knows Joe as well, to say hello. He got up and came over with his girlfriend to introduce us. He was clearly proud of her and completely smitten with her. She was a little bolder than him and she struck up an easy conversation, showing us her ring and talking about their plans to marry. Another perfectly normal conversation.

They returned to their table with our congratulations ringing in their ears. His smile was as broad as it could have been. He'd mentioned that not everyone had congratulated them, so he'd seemed thrilled with ours. They went about their meal, we continued to chat over our drinks. It was a nice afternoon.

We said our goodbyes to them, wished them luck on their wedding and future life together as a couple, and made our way back into the restaurant to pay for our drinks. Just inside the door were two women, my age, had chosen the cool of an air conditioned interior. They were staring out the window at the young couple.

"It's just so sad," one said to another, both nodding at the sentiment.

I was chilled by the statement. Chilled. It seems that maybe we've come to the point where the myths about disability and about living with a disability, particularly intellectual disability, are so strong that people can't see what's there without layering preconception and prejudice over what they see. OK, there are things that they couldn't see. They couldn't see that he has a job and maybe they couldn't see her engagement ring but it was what they didn't see that astonished and concerned me.

They didn't see two people with an intellectual disability out on a date on a sunny patio having dinner together.

They didn't see two people in love.

They didn't see two people living completely independently.

They didn't see two people enjoying a beer and wine with their meal.

They didn't see two adults, together, doing adult things, in an adult way.

I'm not sure what they saw, the pity crayon, when used to colour perceptions obscures most everything doesn't it?

If people can't see quality of life then they can't see equality of experience. "It's just so sad," they'd said because when they looked out the window they saw something that wasn't there. I agree with one thing, it was sad, sad that they couldn't see what it looks like when a young couple is simply in love.

The One Part of Some

I have spent the last half an hour frustrating myself. I was trying to find a link to a story that I saw referenced on a Facebook posting early this morning. I didn't read much of the story, just that a young person with Down Syndrome had 'snapped' on an airplane flight and attacked a couple of people. It was early, way to early to read this kind of article, I need to enter my day with positive affirmations and a cup of hot tea. I did notice the comment section of the post had people wondering what had happened before the outburst, what he might have been subject to, what the circumstances were that would explain this behaviour. The comments seemed to look for a reason behind the behaviour, which is laudable, but there was also a tone, in some, that once the reason was found then the behaviour would be excused or the blame located elsewhere.

I get this, and I get the concern. The very nature of difference means dealing with prejudice, means knowing that an act by one is seen as an act by all, means knowing that the whole story is never told - particularly if that story seeks to understand rather than inflame bias. A story about one young man with Down Syndrome who acts out on a plane becomes a reason for all people with Down Syndrome to be denied flights. If they applied that standard to movie stars and then first class would be empty most of the time.

It's important that we, as a community, keep the message clear. Inappropriate behaviour is inappropriate behaviour no matter who engages in it. The fact that someone with an intellectual disability in general or Down Syndrome in particular, engages in inappropriate behaviour is simply and indicator that that people with disabilities are just as likely as anyone else to have bad days, do bad things and have really bad moments. It's the 'one' part of 'someone' that people need to focus on. Just like when one person with an intellectual or physical disability climbs Everest means only that one person with an intellectual or physical disability climbed Everest. It doesn't mean more than that.

We are a long way from just being citizens representing only ourselves. I think of this some times when I'm dealing with someone. Will my behaviour or attitude or actions be seen as only mine or will they be seen as 'that's what people with disabilities are like' ... I don't want the burden of being poster boy for the movement, I don't think that anyone should bear that. We are all individuals, our achievements are uniquely ours, our idiosyncrasies are idiosyncratic.

This fellow on the plane, if the story is true, no matter what he did or why he did it - HE did it for HIS reasons. We are not required, as a movement, to explain away his behaviour or justify what he did - we do have a responsibility to ensure, as much as we can, that the full story is told and that his behaviour be seen in context. But cannot be seen to be saying that inappropriate and dangerous behaviour are acceptable when the person has a disability. We'll be our own worst enemies if we suggest that standards be lower for people with disabilities.

One person does what one person does.

That's really the long and short of it isn't it?

What I Didn't Do

We got to the Vampires R Us, otherwise known as the lab, and lined up with other people waiting to be drained of blood and urine. We were third in line, though as it got closer to 8 the line up grew extensively. The hallway is narrow and my wheelchair is not so when an elderly woman came along with her son, they scootched by me and headed to a small bench at the far end of the hallway.

When the door opened, there wasn't a mad rush to get in first, people honoured their place in line and those there first got in first. How nice. I was third in line, the elderly woman with her son were sixth in line. I went in, got my number and went over to park my chair off to the side. When mother and son came in, she was clearly confused and a little upset about being there. Her whole conversation with her son was about death and illness and her will.

On a side note, when she said to her son that she was angry at her daughter and wanted to take her out of the will and leave everything to him, he said, "Mom, you are only angry with her right now. You and she have loved each other for her whole life. People get angry with each other and then get over it. You wouldn't want to make a decision now that could hurt her (he said her name) for the rest of her life. Give it time." So, he's a decent guy.

Anyways they were sitting near me and my whole body, my whole mind, my whole SOUL was telling me to switch my 3 for their 6 and let them get in and out quickly. I wrestled with myself right up until the number 3 was called and I went in to get my blood drawn. I could still hear her talking with her son, anxious about the test, anxious about her will, anxious about her life. I could hear his calm voice wrap around hers hugging it with understanding.

Why didn't I give my number to them?

I didn't need to be 3rd, 6th would have been fine. I wasn't rushing anywhere. Ultimately I decided that in that moment, I lacked the courage to be nice. It takes assertion to be able to enter into a conversation with another, to offer something to them. It takes a strong sense of self to risk embarrassment and refusal. It takes something that I have some times and that I don't at others. I didn't then.

Now all I have to do is remember what it feels like to NOT do something you are willed to do by the inner recesses of self and soul. That might be motivation enough.

And I'll have another chance because they just couldn't get a vein and after 12 pokes, two in the hand that hurt like, well NEEDLES IN THE HAND (sometimes a simile is NOT necessary), I said, "I'm done."

Opportunities to be nice are as much opportunities for us to assert what we believe, that we are part of a community, that we watch out for others, that kindness matters. I lost that one. I really hope that opportunity knocks again.

Prepared!

I was rushing to meet Joe. He'd taken the short route up the stairs and I went around to the accessible entrance at the front. I whooshed through the automatic doors, rounded the escalator heading for the ramp. I came to an abrupt halt. An elderly couple was making their way slowly up the ramp.

He was slowly moving his walker up the ramp, she was walking behind him, arms out ready to steady him if he fell, and together they made it to the top. I was waiting, as patiently as I could, for them to clear the top of the ramp so I could head up safely. But a step or two from the top they stopped. He was obviously winded from the effort so he slowly locked his walker and turned round to sit.

Oh no.

I was completely blocked.

But wait ...

As soon as he was seated, she moved closer, took the brakes off the walker, and took hold of the handles. He, then, lifted his feet slightly and she began to push him along. It was slow, but it was steady, and soon I had lots of room.

Up I went.

As I came round them I caught his eye and said, "Nice ride you've got there."

They both laughed, I think they were a bit grateful I wasn't cranky about the wait. They'd known I was there. He looked at my slyly and said: No matter which way they come at us, we're covered!"

She laughed like she'd never heard it before, and, so did I.

That's attitude of the best kind.

A Quote from a Conversation

"Every time I go out, I am reminded that living with a disability, with difference, is like being surrounded by and forced to look into thousands of unkind mirrors. My reflection in the eyes of others is carnival misshapen. In one, I am a lazy drain on society. In another, I am ugly and bulky and belong indoors. In another, I am their worst fear come to life. Thousands of unkind mirrors, reflecting, me against glass warped by prejudice, and fear, and hatred. Sometimes I look at myself, in my own mirror, but when I do I must ensure that I can see who's actually there, without that twisted, grasping, ugly, needy thing that I see, in thousands of unkind mirrors, looking back at me."

Vein Hope

Today I got up filled with worry. I have to go get a blood test, routine stuff, but this is always a bit of an ordeal for me. I am what they call 'a difficult poke' ... I imagine that could be a compliment or an insult in various circles. So I go in knowing that I'm going to be jabbed several times. Occasionally when the moon aligns with mars they get it first time.

The worry, though, isn't about the poke. or pokes, that I am going to endure.

It's about the poker, the one wielding the needle.

The lab where I go has a variety of staff. Some take the frustration of getting me with ease and humour, some act as if my veins are acting under my direct command as they bob and weave to evade the needle. My experience of being physically poked isn't half the issue ... not even quarter. It's all about the attitude.

I have my favourites, of course, those I know who will take time and be thorough and will treat me as I'm a human being with veins rather than a vein surrounded by needless flesh and bone. It's not really possible to ask for a particular person as it's a pick a number, wait for turn, sit in a room, wait for who comes. When someone comes that I know is testy, I tense up. When someone comes that I know is kind, I relax. It's simple.

I was thinking about my worry this morning and wonder if that's how those who receive service always feel. Do staff in group homes, or in hospitals, or in shelters ... know that they, if they chose, could be the presence that relaxes, the person who is looked forward to, the person that someone wishes for? Do people think about how others anticipate them?

There is so much under our control.

It's about how we set our minds, about how we allow our attitudes to frame our interactions. I hope I get the woman, who I now realized chooses how she will be, who makes the right choice, over and over and over again.

WTF?

"No, thanks, I'm good," I said voice dripping with sarcasm.

"You're on your own then," his voice said, annoyed.

"No, no, I'm not," I said to the closing door.

An unpleasant little interchange, I admit. One that could have been avoided, I could have behaved differently, but, my good heaven's, I just couldn't.

Joe and I have been to that theatre before and have the routine down for getting out at the end of the movie. I roll down on ahead of him, at the bottom, I pause he slips around me grabs the door and we're out. The pause is barely noticeable. Joe, could of course, go before me but for some reason, that's not how we do it. Anyway, I was rolling down towards the door, a fellow about my age went out in front of me and just as he was going to let the door swing shut, he noticed me. He said, "I'll hold the door for you, but you are going to have to ask!" I shook my head, afraid of what I might say if I spoke, "Come on, just say please," he said. I washed my voice of anger, got out everything but the sarcasm, and then said, "No, thanks, I'm good."  He was gone, Joe came round, I was out.

We went along in silence for a few seconds, oddly because we'd both loved what we'd seen, then Joe said, "I think that he thought he was being 'cute' and 'friendly'." I asked Joe if he thought I should have just asked him, "Nope, I wouldn't have either."

Then we chatted about "The Audience" and marvelled that we were able to see it in a theatre here in Canada. We've gotten used to seeing the Met Opera on the screen, but seeing this seemed very different than that, for reasons we couldn't quite determine.

As we strolled up the street I told Joe that I wanted to invent an 'asskicker' button for my wheelchair. I'd never use it, of course, but I'd like to have it nonetheless. Joe said, quickly, 'I'd use it.'

I realize, of course, that if Joe hadn't been with me, it would have been harder to have refused his 'offer'. Even so, I think I would have. There was room enough for me to pause, let others around until an offer was made that didn't involve begging.

I have a disability, true.

I need help from time to time, true.

But neither of those things gives anyone the right to force me to humble myself in order to get assistance. Maybe I'm too proud. But, in my mind, thank god for pride, disability or otherwise, because that's what motivates me to stand up, even while I'm sitting down, to someone.

The Faint Stirring of Revolution

We were having tea on a patio. The day was patio perfect, sun but not to much, heat but not too much, shade and just enough. We hunkered down to talk and to people watch. The table one over was taken by a couple of guys with intellectual disabilities, one of who had Down Syndrome, who were accompanied by a staff woman.

I think sometimes those in support providing roles need to establish themselves, to others around, that they work with people with disabilities, that they are the staff, so they do things to identify themselves as staff and disidentify themselves with any possible disability. I've heard, sometimes staff say, with real annoyance, that they had been mistaken for someone with a disability when they were on a community outing. So, to avoid that absolutely horrible and soul crushing assumption from being made, they become kind of uber-staff. This one was doing so by fussing and bossing. "You sit there, and you sit there," she said, to men much older than herself, as she busied herself around. Kind of like she was a mom who had given birth fifteen years before being borne. Finally she found out what they wanted and she headed into the store to get what they wanted, she paused part way there, and said, in that staff voice we all know and used, "don't go off anywhere."

Both men had been very patient with her. I believe they knew what she was doing. I certainly did. The sat quietly looking out at the street scape for a few seconds then one glanced over at the other and when their eyes met, they started laughing. The fellow with Down Syndrome whispered to the fellow with him, "don't run off now," and his friend responded, "and don't you slop tea all over yourself." Then they laughed. She came back and busied around enough establish, for those who hadn't seen the show's opening that established her role, that she was indeed a hierarchy or two above those she sat with.

That short discussion, the recognition of staff's need to subjugate them to upgrade her status, the humour they used to defuse the situation they were in, all of these things are important. It means that these two men had developed enough of a relationship to share these moments together, to check out their perceptions, to recognize that they were in it together, to support one another through was was social demeaning behaviour on the part of the staff ... all these things, which are, of course, the faint stirring of revolution are becoming more and more common.

I'm seeing this everywhere I travel. Seeing people with disabilities begin to talk about and notice the behaviour of those around them. Forming friendships that are as much for a sense of alliance as anything else. Openly talking with each other about the behaviour of those who are around them.

If you want to radically change yourself - first, you've got to acknowledge the problem.

If you want to radically change the world - first you've got to acknowledge the problem.

Radical change, of any kinds, always begins in the same place. The recognition and acknowledgement of the problem. These two men are there. They have recognized that her behaviour was at best silly and worst insulting and they had clearly already begun a dialogue about that.

I believe that every revolution begins with small conversations about small things. In the years I have watched Vita's Self Advocacy Group grow I have seen how small conversations can turn into action and action can turn into change.

The faint stirring of revolution continued. She got back and said something I didn't hear. Then she notice them rolling their eyes at each other. She asked what they meant by that. I couldn't hear the answer, but she looked startled and annoyed.

That's the typical reaction to any minority getting 'uppity'.

Picture Me

A quick story from the parade ... my big moment ...

I've talked to other's like me, who are considered grossly obese, and know that I'm not alone in this - going out sometimes takes combined acts of will and courage. We are not well received in the world and those of us who use mobility devises are even more reviled ... my wheelchair is evidence of how lazy I am in the minds of others. So, for me to march in a parade I need a double double ... extra fortitude and extra self esteem. But I march because I'm with Vita's self advocates and staff, because I'm with Joe and Ruby, true ... but I also march for me, to prove to myself that I understand, fully, my rights, and that I refused to cede ground.

On the route itself I hear people shout out, 'look at the fat guy, get a picture of the fat guy' often these people are in the crowd right beside me. I can hear them. But they are so intent on their picture that they lose all sense that they are in public, speaking loudly. I try as much as possible to avoid these pictures. I don't want to end up on Facebook with a horrible caption under my photo.

However, when I see these folks with I think, I am DOING and you are WATCHING ... I am PARTICIPATING and you are PASSIVE ... I am IN THE PARADE and you are AT THE PARADE. But they don't get it. Watching has become doing I guess. Anyways, I know what's up before I get in the parade and that's why I get in the parade. There are lots of ways to be proud.

But, going along the route I noticed a knot of disabled people sitting together on scooters and wheelchairs. They weren't in the designated disability access area, they were just together up at the barrier watching the parade. When one of them spotted me, he reached over and tapped the person next who called to the others. I had been seen. Several of them were large like me, others were simply regular sized mobility aid users. I got eye contact with the group and then they started cheering, wildly cheering. Thumbs when up, fists were raised, I spun my chair around to their cheers and then I shot them with my water gun.

It was a moment.

Community experienced within community.

I got the impression that they didn't expect to see someone shaped like them, who moved like them, who understood the world like them. But they did. I didn't expect to get that kind of acknowledgement, but I did.

It was my big moment.

An unexpected one.

Service, Support and Success

This month's issue of Service, Support and Success: The Direct Support Professional's Newsletter is out ... the topic was suggested by a self advocate ...'tell them not to say 'no' so much' ... If you did not get one you are not on the list. The only way to subscribe is to email me at dhingsburger@vitacls.org and let me know you'd like to get the newsletter.

Winnie Makes an Appearance

What a weekend!! Our anniversary on Saturday, Pride day on Sunday and now Canada Day on Monday. There is much to write about all the events of this weekend, but today, we're going to take the day off from responsibility and therefore, my blog today is short. I'm leaving you with a picture of one of my favourite Canadians ... You all know that Winnie, the bear who inspired the stories, was from Winnipeg, right? So here he is, the official flag bearer of Rolling Around in My Head ...

At request I'm adding a picture of the real Winnie ...