What's Really Scary?

We were sitting and chatting, a seven year old and a four year old and I, about Hallowe'en. I was hearing about costumes while the kids were decorating our apartment with black and orange streamers. There were skulls and flashing eyeballs to be placed, just right, around the apartment. I had to work to ensure that my wheelchairs weren't wrapped up in orange and black! The girls were talking about really scary things ...

vampires ...

witches ...

zombies ...

mummies ...

Both girls like scaring themselves a bit so they went over the top, if that's possible on Hallowe'en, about ghouls and ghosts and things that go bump in the night. Interspersed with all that were giggles and laughter. Finally the apartment looked suitably scary, it kind of looked like parts of the apartment were behind spooktacular crime scene tape.

Later, we went to get their nails done, there is a wonderful salon nearby that is really welcoming to the girls and they have women there who can paint designs on tiny little finger nails. Ruby opted for black polish with webbing and spiders, Sadie opted for even pumpkin faces painted over orange polish. Again, when we left the store, we chatted about scary things.

At one point I asked the girls, "What do you think the scariest thing in the whole world is?" Ruby didn't take a second to answer, she said, "Bullies." Sadie thought for a moment and said, "Ruby's right bullies are really scary."

I have to admit, this wasn't the answer I expected. It was the answer I should have expected but, even so, it took me by surprise.

Bullies: people who are mean on purpose.

Bullies: people who hurt others deliberately.

Bullies: people who intentionally demean others.

I understand why the girls felt that way. Mummies and zombies and vampires and witches, all of whom they will see tonight as they go out to gather candy in big sacks, they are the fun kind of scary. It's real people who do really mean things to purposely hurt - that's what's scary.

Almost immediately after Ruby's answer and Sadie's agreement our attention was caught by something else. We continued on our way.

I disagree with the girls about the scariest thing in the world. To me, bullies aren't the scariest thing ... what scariest is the inaction of those who can but don't take action when bullies bully. It frightens me that bullies seem to act with tacit acceptance of their behaviours. It frightens me that bullies even have the slightest opportunity to frighten two little girls.

Give me a zombie, give me two ... but save me from those who won't do what they should do to stop hurt, harm and fear.

Here's to a night of ghastly spirit's and the howling of yawning graves ... let's just make sure that on the morrow, we confront the every day evil of purposeful hurt.

What I Wore to Work on Monday

Several months ago I switched my hours at work. I started coming into work somewhere between 6:30 and 7:00 in the morning. I had tried for the more traditional 9 o'clock arrival but I was always late. I take WheelTrans to work and the demand for arrivals at 9 is very high, traffic is incredibly heavy and the number of stops between home and work is formidable. So I always got in late. Going in really early means little traffic, few delays and usually a solitary ride north.

Monday, I had an incredibly early pick up time. Incredibly. Now I'm normally up early anyways but yesterday I struggled to get up, struggled to be ready on time. After showering I reached and grabbed a comfortable old shirt, I had no appointments scheduled so I was working on projects and didn't need to wear a spiffy shirt, and the nearest pair of jeans. Shortly thereafter I was in my chair, jacket on, and heading down to the bus.

The ride was smooth, the driver nice, unusually we had one pick up - a lovely woman. After she was dropped off I arrived at the office at just before 6:30. I locked the door behind me and went up to my office (I love my office) and pulled the chair in place. I pulled off my sweater, headed to the washroom, turned on the light ...

and saw myself ...

Oh.

My.

The old shirt I'd grabbed should have been put into the laundry, not left on the chair beside the bed. It was the shirt that I'd worn when we were making Joe's birthday cake:

(photo description: Dave in his manual wheelchair in the kitchen with Ruby standing beside him holding a bowl of cake batter and Sadie sitting on the counter stirring the batter.)

My shirt was covered in splatters of batter. There was a fine spray of droplets across my chest, a result of a stir going wrong. There were a couple big drops on the bottom of the shirt that I remembered having happened when the cake made it's perilous way from bowl to pan. But not only that, there was:

(photo description: Ruby who is seven and Sadie who is four each enjoying icing. Ruby is holding a spatula and Sadie a wooden spoon.)

I had a four inch line of chocolate icing right in the middle of my chest. It looked like it had been drawn there, I don't remember how it got there, but get there it did. My shirt was a mess!

Then, I looked down. The pants I was wearing didn't fare much better. They were covered in:

(photo description: Sadie standing at a potter's wheel with her hands covered in wet clay, her clothes turning from purple to grey as they become more covered in mud.)

Grey dust that came from:

 (photo description: Dave in his power wheelchair carrying Ruby and Sadie walking along beside the chair holding on to the armrest.)

Giving rides to the girls on my chair when they were still covered with the remnants of the pottery class they'd taken at the Gardiner museum. I hadn't realised how easily the mud would jump from them to me. So my shirt was covered in batter and chocolate from baking Joe's Popcorn Snake cake:

(photo description: Ruby and Sadie holding a cake in a glass pan, the cake is iced with chocolate icing and popcorn is placed in the form of a snake on the top. Two candles are the eyes of the snake.)

So I had started my week with an early Monday morning ride to work, wearing clothes that hadn't made it into the laundry basket. I sat looking at clothing that was marked with memories. I decided on the spot that I'd chosen my clothing quite correctly. I smiled every time I noticed a splatter of cake, a line of chocolate or a patch or mud.

I always park my wheelchair right at the door. It's folded up and rests there for the day while I use my office wheelchair. At one point in the day I made the connection between the mess on my clothes and the happy memories that came with them and my chair. My lovely, lovely chair. The one that gets me from one place to another. The one that can be in my kitchen making cakes with kids and the one that gets me from home to work and back. Then there's my power wheel chair that turns me into kind of a RoboDave who can carry kids for blocks and blocks and blocks.

I had always realised that the chairs were liberators, that they freed me to move. They carry me from place to place. But they are more than that, they are part of the relationships that I have in my life. Relationships made possible by the chair, by the things it lets me do with others. As I was thinking about all this, looking at my home chair, folded up neatly and napping against the wall, when I noticed that on the left armrest was a huge streak of chocolate.

I guess the kids and I weren't the only one's to lick the bowl.

Becoming Ordinary

I rolled into the store, like I have many times before, I was greeted, warmly. This stands in stark contrast to my first visit to the store. On first entering, that first time, people weren't rude, but they clearly hadn't seen a man of my size, in a power wheelchair, going about his business. I was gawked at by several of the store employees. No one was outright rude, but no one was outright welcoming either. When I purchased something, that first time, I chatted briefly with the clerk who had that, "Wow, he's kinda like everyone else," look of surprise on her face.

Now? Well, now is different. I'm part of the neighbourhood, part of their customer base. Some know me by name, all know me by sight. I'm greeted always, gawked at - never. I've gone through the transformation from extraordinary to everyday ordinary a thousand times over. In my home neighbourhood, the construction guys building the condo next door simply say 'hello'. They no longer nudge each other and whisper comments to each other as I pass by. The folks at the grocery store know me too, the manager always immediately looks to ensure that the accessible aisles are open because he knows, if they aren't, we'll be chatting about it ... again. The gay guy at the liquor store always has a joke for us. Pretty much everywhere I go, when I go alone, pretty much everyone says, "Where's your partner?"

We've created a few blocks of welcome simply by being out, and doing what we need to do, and engaging people in polite, humorous, banter. They've come to think of Joe and I as 'those nice men'. I'm thought of, I'm sure, as someone who's pleasant but who also expects accessibility and who isn't quiet when it's not available.

We're about to go away for a couple of weeks, we'll be in 9 different cities, not all for work, some just stops on the way from and to, and I need to get ready for the trip. Of course there's all the organisational stuff that needs to be done. But there's also the psychological preparedness. I'm leaving a neighbourhood where I've become ordinary and going to places where gawking will be the norm, discomfort will be the tone of many interactions. Beyond that, I KNOW, inside and out KNOW, every access point to every place that I want to go. I'll be going to places where this is all unknown. Most websites don't mention accessibility. It's all up to chance and a thousand phone calls.

This isn't to say that I don't want to travel or don't like to travel. I'm looking very much forward to the trip, very much forward to the work. It's just that I've got to get ready. Joe will be packing our stuff. I'll be packing the resources I need to cope with being the odd one - out.

Grisly Hallowe'en: A Quiz

Is it just me?

As the awareness dawned on me I didn't know how to feel, beyond horror. And not the kind of horror that they were going for. I was shopping for some Hallowe'en decorations for the kids who were coming for the weekend. They both like decorating our place, no matter the holiday, and we like seeing the buzz of concentrated activities as streamers get strung and decorations get artfully placed. So, I needed some spooky stuff.

The store I was in had some unusual looking skeletons so I went to take a closer look. They were hanging, in a row, on a long peg. The first one struck me as very funny. It was a skeleton with fishnet stockings, high heels and a jaunty hat. I'd not seen them presented this way before and thought that the girls might find it funny. Then I went through the rest of the stock to find the one's in male garb.

There weren't any.

Not a one.

Suddenly the display, the row of dangling dead women became something much different to me. Something horrifying. Something not funny at all. I then thought about the fishnets and the high heels - oh my God what am I seeing here?

I had thought it was 'ye olde time' clothing. Maybe I was wrong. I had expected to find skeletons with chaps and a cowboy hat. But no ...

... it was just a row of dead women ...

... in fishnets ...

... and high heels ...

I hung the one I'd taken down back up in the row. I left the store disturbed. We had two little girls coming to visit. I want them to grow up in a world where women are safe, women are respected and where women have powerful voices.

Not a world where dead women hang on a peg in a store - bargain priced.

Am I over reacting, as I've already been told I am?

Snakes on a Plain White Cake

As Joe's birthday fell midweek and both Ruby and Sadie are in school, we'd celebrate on the weekend. Mike and the girls came down Saturday and we will meet up with Marissa today to go to the Gardiner Museum's show Animal Stories, then have lunch there (they have an amazing restaurant), then afterwards the girls would go down with their parents to a pottery class. It's a busy weekend, but it's full of stuff that we enjoy all doing together.

Today's big adventure was making the cake, we'd decided on an orange jello cake with chocolate icing. We're vegetarian of course so we used a vegan alternative. To make this we sent Joe out on a chore, then we set about working in the kitchen. We made the cake from scratch and there wasn't a part of the cake that the girls did not take part in. They cracked eggs, they scooped flour, they measured out the vanilla, they whisked and they stirred and when it was done, they helped get it into the pan. We chatted all the way through.

After the cake came out of the oven, we let it rest for 15 minutes and when that was done we set about attacking the cake with long cocktail sticks, there was a frenzy of stabbing activity going on, the cakes would have shocked a coroner. Then we mixed up the orange flavoured jelly crystals with hot water followed by cold water. Then, it was poured all over the cake and we watched as all the liquid went down the holes we made.

It set for two hours and then was ready for icing. In that two hours we went out to get the girls nails done. Ruby has black nails with spider webs painted on thumb and little finger and the spider itself painted on the middle finger. Awesome. Sadie chose to have evil pumpkins so she had her nails painted orange and she has four pumpkin faces spread over four different fingers. The women who do this are incredibly talented.

It was back to the cake, Ruby slathered on the chocolate icing, Sadie had decided that she'd join us for licking spoons but wanted to finish colouring something. Ruby was Martha Steward efficient with spreading the icing. I always get crumbs mixed in. Not Ruby! I was in awe of the speed and confidence she showed in getting that icing to where it should go. Sadie then joined us for licking the spatulas and spoons.

Now the big piece of work. Joe hates snakes and the girls love surprising him with snakes. We took a bag of popcorn and used it to create a snake winding around the top of the cake. We put in two candles for eyes and one for the tale and one in the middle just for show.

All this means that I was surrounded through the whole process with laughter and with a joy. The girls love participating in making the cake. They loved the hands on experience. They loved licking bowls both of batter and of icing. It was awesome.

It's times like these that I realise I need more laughter in my life. I need to have moments where I am concentrating on things that are simple, and homey and joyful. What with the work that I do, with the advocacy I get involved in, with the stories I read about violence against people with disabilities. The world can get very dark.

I can forget that you can pour orange jelly on cake, that you can make popcorn into snakes and that it's nearly impossible to wrestle a spoonful of batter from two little kids.

I said, almost ... though I think they let me win once.

(lots of pictures were taken, but Mike took them, I'll post some when he sends them to me)

Hiding Between The Pages of a Book

I am reading a novel, set in 13th century Norway, written in 1925 by Sigrid Undset. The Master of Hestviken is a four book set that takes the reader into a world long ago and far way. It's easy to connect with the characters because they experience their world intellectually and emotionally much like we do. God is present in their world in a way that we no longer experience, but then the same could be said about 'community' - which means something very different to what we now know it to be.

But what I found interesting in a book written almost 90 years ago is that Ms Undset created a main character, I won't tell you which, who was a deeply closeted gay man. I'm sure that the closet door was deep because she was writing at a time where gay characters were not written about with accuracy and compassion.. Further, she's writing about the 13th century where men and women would be slaughtered for their attractions.

I've been very moved by the existence of this man in the book. I've been even more impressed that the author created him without relying on stereotype. He is never publicly 'outed' by any other character. She lets him live, as a gay man would have then, hidden behind veils of secrecy. Even the words she chooses when describing him have letters big enough for him to hide his heart behind.

It makes me realise, deeply, what freedom means. What it is for me to live my life, openly. To write here of Joe, the failed boycott of my blog - threatening that if I continue to write about my relationship readers would stop reading - a couple of years ago, notwithstanding. To have Joe join me at work, and even help out on some committees and events that I'm involved in. To have the ability, in conversation to speak of my life - without filters. These things were hard won rights.

So as I read, I feel a sense of gratitude. That the boycott failed. That my workplace is welcoming of diversity. That my friends accept me and 'us' both.

There were times when I wanted to reach out to the man in the book and say, "Times will change." But he wouldn't believe me. In fact, the idea would frighten him, perhaps, to death.

Ms Undset writes of worlds that are experienced differently by women, by LGBT people, by disabled people ... I don't know if she did it as a warning or simply to chronicle what was. She's a author of fiction but she writes of real lives and real people.

These books are difficult reads. They take a lot of time. And there are a LOT of pages. Though it's daunting I'm glad to have met this man. Glad to have been reminded, for a moment, not to take for granted what it is I have, what it is I need.

The Captive, Freed

(subtitles are embedded into the video, done in such a way to represent Alonzo Clemons' speech patterns)

I believe that this video needs no commentary from me. (Thank you Susan for sending it my way.)

Gratitude Anonymous

At the push of a button, two doors swing open.
Though I need only one, I appreciate the extra space.
She is standing there, wanting me to look at her.
I do, I see her indicate that she is going to step to the side.
She is going to go out the other set of doors, not the one in front of her.

I begin to say, "There's plenty of room."
She keeps staring at me, keeps willing me to see her.
Wanting me to watch her step aside, make room for me.
But I don't need that room, there's lots and lots of space.
It seems that she's waiting for something, her foot taps.

Her eyes burn as the look at me, I see need there.
I see craving, an addict needing a fix.
Moving through the door, the door with plenty of space.
She continues to wait, her hand indicates a message
I AM GOING THROUGH THE OTHER DOOR, THANK ME.

I am disabled, I am often expected to give thanks for help I don't need.
I don't want to say thank you, I'm not miserly with praise.
But this is silly, she is inconveniencing herself for no purpose.
There is lots and lots of space, but not now.
She moves in front of me, now my way is truly blocked.

I look at her questioningly, we've yet to speak a word.
It's a military ballet, I move and she counters.
Now she steps out of my way, now I am compelled.
"Thank you," I said unwillingly and with a bit of resentment.
And I see it, really see it.

The gratitude of the disabled, that's like a bump of crack.
It stabilises the sense of superiority, and makes giving getting.
The gratitude of the lesser, that's an addiction.
She had her fix, my thank you took away the fire in her eyes.
And left it burning, deep and hot in my heart.

61

Today is Joe's birthday.

We met when we were 16 and in high school. He is now 61 and I am 60. For two months I will enjoy being the youngster in the relationship. The jokes I make over the next few weeks I will make the same kinds of jokes that I have made for nearly 45 years. Joe will laugh at them, even though he's heard them all before, because that's what Joe does. He finds a lot funny.

I'm lucky that I found someone with both a sense of humour and a sense of kindness. Those two traits make Joe an exceptional person. I was speaking the other day with someone about how relationships fall apart when the spectres of disability or disease raise themselves. When she mentioned this I hadn't even thought that I should count myself either lucky or fortunate. It had never crossed my mind. Joe's just not that kind of man.

He's the kind of man that's kind, and funny, and patient ... and who can piss me off faster than anyone else alive.

He's the kind that Harumphs.

I'm the kind that pouts.

The neighbours think we're quiet.

Neither of us do much for our birthdays, we never have, it's hard to think of something special to do when you figure that every day is kind of special - and I'm not being trite. I think we've never taken our relationship for granted because we became a couple when the world demanded that we live as singles. We never had the approval of church or state. We never had to return the extra microwaves, still wrapped in wedding paper. We never listened to those who said it wouldn't, couldn't, shouldn't last. We just made sure it did.

So we'll do ordinary stuff today.

Just ordinary stuff.

But it will be special simply because he's a year older than me. I'm a year younger than him. And in a relationship like ours, that's fun enough.

Wrong Track

We spent a fair bit of time in museums last weekend. There were several exhibits we wanted to see and, for once, we had some time go get to them. I was almost through one of the exhibits, Joe takes a little longer to get through as he is compelled to read every single word written either on displays or on little information cards. I am not thusly inclined. Just as I was about to leave I was approached by a woman who I knew was one of those that gave tours of exhibits at the museum. I'd been on a few of her tours in the past. She headed straight for me, by several other people, and arriving said, "I'll be offering a tour in about fifteen minutes if you'd like to attend." I thanked her for the offer but said that Joe and I would be leaving before the tour started.

As I waited for Joe to catch up, I wondered, "Why did she head straight for me? Why was I the only person that she personally invited to attend the tour?" I had seen that she'd not asked anyone else, instead she was gathering up what she needed to be ready for the tour to start. My thoughts ran down a well worn path - my disability makes me special and people often want to show exceptional welcome to prove something to themselves and others. I began to be disgruntled.

Then I thought: If I wrote this, many blog readers would say, "You should have asked, you have no idea what was going on in her mind, you are operating on assumption." I had time and I had the inclination so I went over and said, "May I ask why you kind of singled me out with an invitation to your tour?" She looked flustered for a moment and then said, "Most of the time I give tours, people show interest but they are very shy of asking questions or engaging me. It gets a little boring just listening to myself, you always ask questions and some of them can be quite challenging."

I knew what she meant and remembered once when she showed a portrait and asked that we notice the diversity of people shown. I asked if 'diversity' really is the right word for a group of people that all looked well fed and despite other differences, none had any kind of disability at all. We then engaged in a discussion about what diversity means both in art and literature. It was fun and many on the tour became involved. So, yes, I do ask questions.

"I saw you here," she said, "and I thought it might be nice to have someone along that I know will ask questions and maybe even spark debate."

Oh.

OK then.

Had nothing to do with my disability at all.

Slowly backing away from that train of thought. 

Allies Unaware

We looked out and saw that it was raining so hard that the puddles danced in celebration. We like walking home, up Yonge Street, from the movie theatre, but the decision was made for us when we watched people come into the lobby completely soaked. We'd take the subway home. This was more daunting a decision than you might imagine. During peak hours, or during poor weather, it's really hard to find space on the train for a wheelchair, particularly one as big as mine.

The platform was completely packed, even so we made our way to where the very front of the train would come to a stop. For some reason it's always less crowded here, and for us it made sense because at our stop, the elevator up would be right outside those doors. We waited and waited and the space around us become more and more filled with waiting passengers.

When the train came, the front carriage was nearly empty, but there were a bunch of young teens who were leaning against either side of the door. They were either talking or using electronic devices. Those on two feet hopped ahead of me into the train, Joe was on, but I realised that it was too dangerous to get my speed up to get in with the space made narrow by legs in baggy jeans.

I managed to catch one young fellows eye and he immediately saw the problem. He batted the friend next to him and the one across from him and, at the signal, they scattered, leaving plenty of room. Once on, the disabled seating was taken by three children whose mother, when she saw me, shooed them off the seats so that I could pull into that place. I did, thanking her for making the space free.

It's a short ride, of only three stops, but during that time I thought about how nice it was to simply have people notice AND THEN RESPOND. I didn't have to say a word, other than 'thank you' which I did several times, first to the youths and then to mom and kids, to get what was necessary.

It wasn't about the space, it was about how the space was used, how the space was allocated. I feel oddly, quite valued, if I'm just given space. Those kids and that mom probably thought that they were doing nothing more than what's right. But, really, their behaviour communicated that they saw me as having equal right to access and equal right to space.

They may not have thought that they had made a statement about the rights of people with disabilities to share and use public space, but they did.

They may not know that they demonstrated themselves as 'allies' to access - but they were.

And maybe the fact that they did it without thinking about what it means, makes it an even more powerful political statement.

The Drama in The Theatre

We entered the theatre. They have only two disabled seating spaces. The one on the right, the side we'd entered, had been taken. I raced across the theatre to get to the other side and managed to grab the space. When you go to see a play or the opera broadcast from afar into your local cinema, the crowd tends to be a fair bit older and the disabled seats are hotly contested. I was in place, Joe and our two friends had seats right beside me. We were in and we were staying put.

The play we were going to see was Macbeth and it was being broadcast by National Theatre Live and the showing had sold out. There was a fair bit of action around us as others tried to find seats. A bus load of seniors had arrived with a 'minder' (which is something quite different from a 'support staff') who kept treating them like an errant group of kindergarten children who constantly defied her will. The seniors simply didn't listen to, I saw one turn his hearing aid off - letting everyone know that he wasn't going to listen to her instructions about how to go to a movie with a large group of other seniors - they were a defiant bunch.

Her goal was to get them all together in the theatre, row up on row of seniors. They, however, had other plans. The got into the theatre and scattered. Sitting in pairs, sitting alone, sitting in small groups of three or four. Some sat down near the front, others in the middle near us, some in the seats lining the walkway, but one, rebel that she was, climbed the stairs to sit much further back.

I know all this because when everyone was in and scattered, the minder came forward, a few rows ahead of us and counted them all, like you see them do with groups of kiddies on an outing. I get the need to know everyone is in and none have gone missing. I do. It was the very public way that she was off to the side and pointing and counting. I know it can be done discretely because I've done it discretely. You don't need to make a show of yourself and when you do, it's usually because you want all about to know that you are a 'carer' out 'caring' and ain't that special.

The reason I know about the woman who climbed the seats to sit further back and higher up was because the 'minder' couldn't find her in the count. Eventually she spotted the woman up in the bleacher seats and said, "Oh, she's gone up the stairs, we were all supposed to stay down in these seats here."

Eventually the minder took her seat, alone, opened the big binder she was carrying and began checking through pages and making notations. This was her workplace and we would all see her work.

In all this though, I was impressed by the spunk and the spirit of the seniors, who wouldn't be told, wouldn't be corralled, wouldn't simply follow the rules set for them. They simply went about doing what they wanted to be doing and let the 'minder' adapt to them. None of them were rude while breaking the rules, but they all broke the rules.

And we all know, don't we, that some rules simply beg to be broken.

Announcing the Turn: a blog for parents of kids with disabilities

Many years ago I worked with a young family who were dealing with a little boy with Down Syndrome who, much to their surprise, had become a toddler who could be a real handful. Mom acknowledged to me, back then, that somehow she didn't expect the 'terrible twos' from a 'heaven sent child'. I agreed, knowing the reference, and said that her son certainly didn't fit the 'meek and mild' qualifications. She laughed.

I guessed at, but never knew, the journey that this family had been on. She was a young mom, they expected one thing but got something different. But they both, father and mother, loved their son and wanted to do best by him. He was a challenge to work with, as a behaviour therapist, because he was a master at getting what he wanted and by shamelessly 'playing disabled' to get his parents sympathy. Once they saw through his gambit, things got better quickly.

Over the years I ran into them at conferences and other gatherings. The most recent was seeing him, the boy, as a full grown man, at a self advocacy conference. I know I'm getting older, not because I feel so much different, but because these damn children I know keep growing up. It was nice to see him and I gave him wishes to take to his mother. He must have delivered them because we had a few emails back and forth to catch up after.

Then, yesterday, and I write all this with at her request, I received an email from mom. She wanted me to know that her son, the man I'd met as a fully confident self advocate, had died. She was grief struck. Even through her grief she wanted to write me, she wanted a safe place to send her anger. So she wrote it down, pushed send, and it arrived in my in box.

Many people, those she has known for most of her life, have said to her that she must be "relieved" and "it's better for him," and "now she doesn't have to worry about him," and that her "burden" has been "set down." She is astonished at what they are saying. "They KNEW him," she screams in her email. Instead of condolences, she getting an odd kind of congratulations. "Well, that's done now." "You've survived that."

Some have reminded her at the shock she had when he was born. She and her husband had a tough few weeks at the beginning coming to accept their child. There were tears and there were accusations and there was guilt - one of them must have done something wrong. But they got through that, they met their child, discovered they loved him, and that was that. There were difficult times along the way. After all I ended up in their home, my behavioural bag of tricks with me, and they had the usual squabbles with schools and with teachers and with random prejudices in the community.

"It is as if because I grieved when he was born, people are surprised that I need to grieve his death," she wrote. She didn't realise that the memory of her shock and grief at the beginning of her sons life would negate the need for it at his life's end.

She wrote me, partly because she wanted to tell me, but she wrote also because she reads this blog. She didn't want her letter printed her, she's approved the quotes I've used, because much of it is much to personal. But she wanted to say to you, through me, that she wishes she'd sat her friends and family down, at some time, and told each of them - "I've over the shock." "I love my son." "I didn't mean some of the things I said when I was first told that he had Down Syndrome." She had just thought that they could SEE and HEAR her love for him. She thought that her husband's obvious joy and pride in the man his son became was CLEARLY evident.

"We haven't been patiently waiting to be rid of the burden of our boy."

After reading the email, I called. We chatted. I cried. She cried. Her husband cried. He was a great kid and he was, as I so clearly remembered, an awesome adult. They'd done good.

I reassured them that their love was obvious. I'd seen it the moment I met them.

But it wasn't obvious to others.

So, I'm doing as I was asked. Writing a blog for parents of kids with disabilities. "Tell everyone that you love your child." If the first few days and weeks were rough, as you adjusted to the role you were about to take on, you might have expressed a kind of grief and mourning, this is often part of the journey for parents of kids with disabilities. It's part of the journey for those who are newly disabled. It's part of the journey for many people for many reasons. It's normal. Just make sure that, when you turn the corner, towards hope and joy and embracing love, you let people know. Drag them round the corner with you - make them see the same thing in new light.

Now, the blog is done, now it's time for me - to join mom and dad in mourning a wonderful life, lost.

Membership?

I was in a store, crowded with after work shoppers. I normally try to go either earlier or later but, today, I had no option. I spent my time, gently and carefully and respectfully, making my way through other shoppers. I said:

Please may I get by...

Would you mind if I slipped behind you...

I need to get just over there, if you wouldn't mind moving your shopping cart, that would be great...

I smiled.

And smiled.

And SMILED

I said thank you

thank you so very much

thanks I appreciate your help

As a result of this obsequiousness, I managed to get what I needed in my shopping bag and hand turned to head out. I noticed the woman first. She was coming into a crowded store quickly. Because I'm lower down, sitting in the wheelchair and all, I didn't see until people parted allowing her through, that she was pushing a monster baby stroller. It was freaking huge.

I watched in awe as people simply let her pass. They said:

Here, let me get out of you way...

Oh, hold on, let me move my cart for you...

Why don't you come by here, there's lots of room...

And they SMILED

She went through the store as if she had the RIGHT OF ACCESS. People seemed to welcome her presence into the place.

I had thought this was about SPACE. About my needing extra space, my needing the cooperation and the assistance of others to make a little more SPACE. I understood that as I needed something from the other shoppers that I needed to proceed, as much as possible in a mannerly and thankful manner.

But it isn't about SPACE.

It's about who's allowed to have SPACE.

Because, trust me, Mom with the stroller wouldn't have noticed a crowded store because she was welcomed into the crowd, she was made part of it, she held membership. And. Membership has it's privileges.

I left the store, with my purchases, and with a new understanding of my place in the world.

Melting Down The Golden Rule: Blog Action Day - Human Rights

I worked up the courage to have a confrontation. Those who read this blog may think that I like confrontation or even seek it out ... but I don't. I have become acclimatized to confrontational advocacy where necessary. If it's about a cause, or about what I consider to be a justice or access issue, I will write letters, I will go nose to nose with someone. However, when it's about me, even when I feel like I'm seeking justice or access for myself, it's a much different issue. I suspect many people find themselves similarly conflicted about advocacy - for someone else, good; for self, not so good. But in a certain situation recently, I managed to convince myself that I needed to clearly speak out about my feelings and about how I perceived I was being treated. This interpersonal stuff is really difficult isn't it?

During the discussion that resulted from my initiating the confrontation, I encountered an interesting use of "the golden rule." You know it, everyone knows it: you need to treat others the way you would like to be treated. I would have had to say, up until this discussion I accepted the logic of that sentiment without question. It made sense to me. But the person I was in dispute with said, of what had transpired, "I believe in the golden rule, I treat everyone the way I would want to be treated. It's hard sometimes but you have to follow through. When I'm down in the dumps I need and want someone to give me a good kick in the ass. I  don't want sentiment and I don't want sympathy. So what I did, I did for your own good. It's what I would have wanted."

Oh.

My.

The 'Golden Rule' became a way to supplant my rights with her wants.

It became clear to me. People are always doing to other people what they want done to them - and are then constantly upset that gratitude doesn't flow. This is done on the smallest scale possible - between two people; and on the largest scale possible between nations. Everyone is doing to everyone what they think is in the other's best interest because it's "what I would want if I, horror of horrors, were you."

As a person with a disability I am often given what others would want if they were me - and it's decidedly NOT what I want and NOT what I would do for anyone else. I think the whole movement towards societal embrace of the murder of people with disabilities by care providers comes from that sentiment. I have heard a thousand times over, "I'd rather be dead than in a wheelchair." Oh. OK. Then could I have a taster on hand before I eat dinner at your place?

Perhaps, and I shake at the fact that I'm about to edit the golden rule, we need to do it differently: you need to treat others the way that they would have you treat them. Shouldn't someone be able to decide on how they'd like to be treated. In my dealings with others, does it matter how I'd like to be treated? Perhaps it might be better if I learn to ask another before moving forward. If I am to support rights, shouldn't I also support voice and choice?

I once got a gift for Christmas. It was a complicated electronic thing that I'd never asked for, didn't want and would never use. It was given to me by someone who really wanted that complicated electronic thing - they said that they knew I'd love it because it was what they really wanted. I didn't ever use it - but it was around for years and was used only when the gift giver dropped by. I said, "thank you" of course, because it was a gift. It just wasn't a gift to ME.

Maybe we all, as people and as nations, would do better if we began at a different starting point. Instead of listening to the inner voice to help us know how to help, to assist, to intervene we need to recognise that WE DON'T KNOW simply because we are only we and I am only I. The start point may be at listening to the voice of others and treating other people as they wish to be treated.

In my heart, gold has lost value.

The golden rule needs to be viewed like the golden calf, an object falsely worshipped.

Begin by asking.

It would have saved hurt feelings and a confrontation between my friend and I. That's a small thing. But imagine it on a larger, much, much larger scale. Imagine it done between peoples, and between nations, and between faiths. Maybe we'd be closer to living an a world that understands what it is to be human and what it is to have rights if we'd just ...

... begin by asking.

The Morning After The Holiday Weekend

The alarm went off too early.

The water is running in the shower, warming.

My work clothes are set out on the bed.

All these things signal to me that the Thanksgiving weekend is over and it's time to get back to work. But I don't want the weekend over, I don't want the season of Thanksgiving to draw to a close. Joe and I have enjoyed the time and even if we haven't overtly spent time chatting about our gratitude and thankfulness about the lives we lead, the opportunities we have and the purpose we share - it was there in the background.

In the middle of the day yesterday we were phoned by someone who wanted to say thank you to us for a small act of kindness we had done a few weeks ago. It was nothing really. The call surprised us and delighted us, not because of the gift of thanks but for the gift of time - we hadn't really spoken at length for a while.

It struck me at how brave it was for her to pick up the phone and call us to say 'thanks.' We all think we live in a world where thankfulness and thank you's are the norm. But we don't. It seems, sometimes, that we are encouraged to think that we deserve all the good things, all the acts of kindness, all the bits of generosity that come our way. Saying 'thank you' demonstrates an understanding of our place in an interconnected social universe. We rely on others, even when we think we don't. We depend on others, even those we don't know. We expect from others, even without knowing

Thanksgiving is knowing.

I don't want to leave the season of 'knowing' behind.

I don't want to forget the interconnectedness I have with my world.

And, right now, most of all, I don't want to forget to say "Thank You" to the readers, faithful and occasional, of Rolling Around in My Head. I appreciate your comments and I appreciate the opportunity to learn from you.

Thanks.

Nobody!!!!!

"Nobody Cares!!!!!"

"Nobody Cares!!!!!"

"Nobody Cares!!!!!"

She was walking, slowly, stopping to violently slap the wall as she screamed, "Nobody Cares!!!!!" For a moment, everyone stopped, frozen, watching her advance. "Nobody Cares!!!!!" I've not seen her before, she looked to be living rough, on the street, but that's only an assumption. Her face was twisted in anger and in sorrow and in desperation as she screamed, "Nobody Cares!!!!!"

Most people watching were either sitting at tables in the food court having lunch or carting bags teeming full of Thanksgiving groceries. She kept advancing, albeit slowly, screaming, "Nobody Cares!!!!!" Suddenly, as if as one, we all incorporated her into the landscape, we all slotted her into the part of the brain that deals with people and situations that cause discomfort. The sounds of living joined the sounds of desperation, "Nobody Cares!!!!" She no longer had the prophet's voice, the one crying in the wilderness. Hers was just another, louder, voice in the crowd.

"Nobody Cares!!!!!"

I sat there, watched her. I saw the distress on her face. I saw the violence with which she struck the wall. I thought to myself, "I Care."

I wanted to tell her that I cared.

But I was afraid.

A little of her ... what if she attacked me?

But mostly I was afraid of what caring might cost me. Joe and I had to get home. I had time to care, but not for long. I didn't have a lot of money on me to give her. What if she wanted or needed time or money that I didn't have? What if she began to make demands on my caring? What if she wanted proof that I cared? What if I couldn't meet her expectations? Her distress was towering, my caring would seem so puny as to annoy rather than assist.

"Nobody Cares!!!!!"

I wrestled with myself. I wanted to roll over to her and say, "I Care." I wondered if she just needed to hear a human voice saying that she was cared for. But then, I thought, my caring is simply an abstract thing. I do care, in general, about other people. I do care about people in distress. My caring comforts me, it lets me know I am a good guy - I care. My caring, would not comfort her, she doesn't want to know of my character she wants to know of my compassion.

Then.

They came.

The security guards.

It was clear they'd dealt with this situation before. They were kind but they were firm. She needed to leave. She left with them. She put her hand on the arm of the security guard. Like mother and son, the touch seemed to calm her. She even smiled up at him.

They stepped into the elevator and the door closed.

And I was left.

My caring in my hand, unoffered.

As I joined the ranks of  "Nobody Who Cares!!!!!"

Thanksgiving

A bright blue sky, a cool fall day, sitting in the sun, waiting.

Joe is in the line up waiting to do banking. I take the opportunity to go outside and sit in the sun. I find a place where I can tuck myself away. Fall is my favourite season. I love the sun in fall. I love the sensation created by cool air and warm sun. People are smiling. They are rushing like usual for this time of day, but, they are smiling.

I notice a man I've seen often over the five years we've lived here. Today he walks with a walker. Slow determined steps. When I first saw him, he used a cane. But as the years have passed, he moved from cane to crutches, from crutches to walker, from walker to chair. Now he moves either with walker or chair.

He's maybe thirty five. I don't know how he comes to disability, but I knew when I first saw him, that the experience was new. His clothes tell me that he has both money and taste. He is lean, just shy of tall, and has a face with strong features which seem to reflect a strenght within. A man to be reckoned with. He is passing in front of me. I nod. He nods. The recognition is new. Maybe a month ago, he returned my nod for the first time. I don't know why, but I felt honoured that he did. There's something about the way he carries himself that makes me want his respect.

A few feet past me he stops. Slowly he turns his walker around. He sits down, tired. I don't speak to him. I am enjoying the cool, the warm and the quiet. He is too. I notice him again when I notice a woman, beautiful, stopped and looking at him. She was about his age. I slide on her gaze over to him. He is sitting, his head tilted slightly towards the sun, his eyes are closed. He is basking in the sun. There is a slight smile on his face that tells me that he is also basking in the moment. He, simply, looks happy.

She stands there. Unaware that people are swirling around her. Some glare at her for being in their way. But she doesn't move. She simply looks at him. Her hand slips into her purse and takes out a tissue and dabs her eyes. They glisten in the sun. She brightens her smile and moves towards him. He opens his eyes only when her lips touch his.

He see her. Embraces her. Stands. Takes his walker. She takes his arm. They walk on.

I do not know what long journey brought him to be there. Sitting on his walker, waiting in the sun. I wonder though if he knew, whenever he was told that his life was going to change, that he'd have days like these. I wonder if in fear and in dread of an unknown future he wished away having a future. I wonder if he could imagine a day, where he would wait, peacefully, in the sun, for the woman who loved him.

I love the sun in fall.

On a Thanksgiving weekend.

the shame filled apology

I made a joke. I said it without thinking. I thought it was funny. The person who was with me when I made the joke didn't laugh, but we just continued on with our conversation. That's how it all began. A comment made, thought humorous at the time, entered into an otherwise ordinary conversation. A simple beginning.

Nearly a full day later I was thinking about the conversation and, into my mind, popped the comment that I made. Suddenly I was no longer thinking about what was said in our chat, I was thinking about what I had said in jest. From the distance of time, I heard that comment, the one where I was just joking, differently.

It was mean.

It was cruel.

It was disphobic.

It was completely unnecessary.

The realisation hit me hard. I couldn't believe I said what I said. I know better than that. I, obviously wrongly, thought I was better than that. The memory of what I'd said. The realisation of how deeply offensive it was. Began to bother me. I knew that if I'd heard someone else say it, I'd have blogged about them and their demeaning attitude towards people with disabilities. Case in point, that's what I'm doing now. Only the subject is me. It was me I overheard making an ass of myself.

A couple of days pass. I worry now about the only other person who knew I said what I said. She is someone I respect and someone who's respect I would like to have. I wondered if she noticed, then I knew that of course she did. Did I really want to draw a lot of attention to it? No. But I couldn't let it pass.

Then.

Just as I was leaving work I saw her in the hallway near my office, I stopped her and said, "I made a comment that I thought was funny at the time but now I realise was mean and cruel. I shouldn't have made it. I wish I didn't. I want to apologise to you for having said it. You may not remember what I said, I'm to ashamed of what I said to repeat it again, so I'm not going to. Anyways, for subjecting you to a joke that really was just mean. I'm sorry." It's hard to explain the depth of shame I had while making this apology. I didn't ever want to have to do something like that again.

She was kind. She said she didn't remember. She said that she'd done that from time to time, made a remark and then regretted it later. I appreciated her response.

I felt better. I could have gone on and let it go but then I wouldn't have let it go. The apology was given, and, in fact, deeply meant. The act of saying out loud to someone who heard me being less than I want to be that I was sorry to subject her to the part of me that still harbours disphobic sentiment mattered. She heard me. That's important. But I heard me too.

I think, maybe, I learned something in all this.

About me.

About the depth of ablist thinking and disphobic attitudes that still live somewhere at the back of my mind.

About my need to watch for the prejudice in me as much as I watch for it in others.

Recommended Without Reservation

I have just had to make a lot of hotel reservations in the last few hours. we are embarking on a fairly long trip that will have us hopping from city to city and sometimes hopping from hotel to hotel within the same large city. This used to be such an arduous task. We'd have to call hotels and go over my accessibility needs and hope that whoever we spoke to understood that WE WEREN'T JOKING. We typically stayed at the Marriott chain because they have an ADA desk and if the reservationist isn't sure or can't guarantee a room, they put my call through to one of the accessibility specialists who spends time with me, getting to know what I want and then they call the hotel and ensure that the room we want is available. Nice.

Nice, but a bit cumbersome.

I always wanted to be able to just book on line like everyone else.

Well, my wish has come true. The website for booking rooms at the Marriott allows me to simply click a button called "room and accessibility options," I can select what I need and go from there. It lets me know if the room type is guaranteed and if it is, we're good to go. Sometimes when you click on the button, no options appear, that usually means that the exact room type you are looking for doesn't have any accessible options left. All that means though is that you go from 'King Bed' to 'Two Queens' (shut up) and click the options there. It's usually possible to find the kind of room that has what I need.

Awesome.

I booked 12 rooms, with the accessibility needs I need guaranteed AND I NEVER SPOKE TO ANYONE. All done quickly and easily on the computer. In other words, I book the room just like everyone else does. It's one of the few websites for booking anything that actually considers people with disabilities as potential customers.

Joe and I want to book some tickets to a couple of shows here in the city. I can't do it on line, I have to phone someone. This means that I can't do it at midnight. I can't do it at 4 in the morning. I have to do it during working hours, I have to wait on hold, I have to spend more energy than any other single person who will be going to the show.

This website, which allows me to tap, tap, tap away on my keyboard with dark of night around me, and end up with what I want and need from the hotel of my choice.

They consider that disabled people might just be a customer - wow.

12 rooms.

All accessible.

Booked.

On the computer.

Awesome.

Picture This Bozo

So, we just wanted to pop into the mall to go to the post office, to pick up medications at the pharmacy and to get a few things for supper. Simple. But on arrival at the ramp I found that the ramp was blocked by someone who'd strapped their bike to it. Here take a look:

This lovely bike blocked so much of the ramp, what with the cool straight handle bars, that there was simply no access up the ramp. Now, there is another ramp up to the mall, and it wasn't much further along, but I was really annoyed. This part of town has all sorts of places specifically for bike riders to lock their bikes to - so there are options. But this selfish person decided that it was OK to block all scooters, wheelchairs and strollers. Their needs are more important than anyone else who might have use of the ramp.

What gets me is that it is impossible NOT to see that the ramp was made inaccessible to any who need use it. It's clearly in the way. It's not inadvertently done, it's purposefully done.

What is this?

I don't know how to think about it.

Is it ignorance?

Is it prejudice?

Is it arrogance?

Don't tell me it's thoughtlessness because I don't accept that - it so obviously blocked the passageway that it had to have been done with a degree of 'knowing'.

Don't tell me that they thought they'd be just a moment - it was there when we went in, and we did all what we expected to do and where in line ups at each stop - we were there a while. It was there on the way out. And yes, we stood in line as soon as we got in to report the situation to the security folks.

I'd like your take on this ... what's happening here?

What does this picture mean to you?

Cause let me tell you it means something to me.

The Seer and the Seen

I saw a young man with Down Syndrome, maybe 8 years old. He was with both his mom and dad and they were having a good time. He was happy. I know those kinds of moments. I have them all the time. Moments of complete and utter inclusion, where disabilities and differences of all sorts just drop away. Lovely, lovely moments. He looked to be having one of those.

Then, out of the blue, two women, passersby, notice him and his family. They stop and stare at him. One is shaking her head while talking to the other. His parents don't notice, they are facing away from the two women. He, though, the boy, notices. He is yanked from the moment. Like someone lassoed his difference and pulled him from inclusion to display. Difference was what they looked at, difference was what they shook their heads at, difference was what stopped them in their tracks.

The boy? He looked completely unsurprised at their stare. He looked weary of it. He's only 8 and already he knows that look. He probably knows other ones as well. Ones of positive affirmation, ones that all children get. But this one, I know this one. Everyone who is valued differently, valued as less, knows it too.

He's too young to have the weight of that look on his shoulders.

He's too young to have to bear the burden of prejudice and bias and bigotry.

He's too young to have to do anything other that grow and learn and laugh and play.

I watched him helplessly.

Then I saw a twinkle in his eyes. He made a V sign with his forefinger and his middle finger and then he did the "I'm watching you" move by pointing that V at his eyes and then at the two women.

They were caught.

It was like a shock ran through them.

They must have thought he either wouldn't notice or wouldn't understand. With one single gesture he showed them that they had been seen, caught, and that he had completely comprehended their actions. They scurried away.

He glanced at me. I silently applauded him. He did the same thing to me, 'I'm watching you' ... but this time he was grinning.

So was I.

Ow!

Well.

That's was interesting.

This blog is going to take me a very long time to type. I type over a hundred words a minute, but this is being typed one letter at a time. Why? Because everything freaking HURTS!! Our first trip with me taking over more of the work and Joe lifting and pushing differently. Because of Joe's therapy and restrictions we've been travelling with my power chair in tow. So I haven't been pushing. I've gotten out of the habit of pushing myself down long hallways and up long aisle ways.

Today I've pushed myself farther than I have in weeks. I conquered a carpet that was thick and plush, great on the tootsies, terrible on the wheels. I felt my muscles strain as I made my way over the carpet. I swear that the carpet offered more resistance than Joe did on our first date. It was brutal. I helped get the chair into the car, I helped in the grocery store, I wheeled for freaking miles.

And now.

I hurt.

I have to go to the bathroom but it'll have to fall out because I can't push anything more today.

This was a wake up call for me. I need to get back in pushing shape. It hasn't taken long to get out of shape with getting around in the chair.

Forgive the long pause but I had to put my hands in my lap and rest my arms. Holding them up to type, even with one finger, is more than I can bear.

So, good night for now, I just can't type another

Probe One

Over the past few weeks I've grown used to Joe laying in bed, of a morning, and doing a series of exercises. These were prescribed for him because of pain that he was experiencing in his hip and which resulted in a diagnosis of osteoarthritis. When he was assessed the therapist thought that if he were diligent in doing the exercises and other bits of advice that she gave him - she even taught him the right way to lift a manual chair out of the trunk of a car - that he would be pain free in a few months.

We've managed the last few trips by using the MV1, there is a company locally that rents them out, so Joe has neither had to lift a chair or push me in it. We wanted some time for him to really heal. Well we head out today for a one day trip. And, we are going in a typical car and using my wheelchair. This means that our trip will be a test of the treatment. Given that it's only one day he won't be carting lots of luggage and won't be hauling books around, but it's a good first step along the way.

I have worked out where I could decrease my need of Joe's assistance, Joe has practised his lifting and pushing skills. We're both a bit nervous about how it goes. The therapist is clear the he's not ready for a long trip with huge demands yet, but she's also clear that he's well on the way to be doing it, although doing it differently, again.

This phase of our life has had me being the one in the waiting room. Me being the one who worries about how he is. Joe's never even had a stay in a hospital, he's pretty solid, so this whole thing has caught me unawares. But it's what comes from ageing. I imagine more will be coming a few years down the line.

But we set out. We'll see how this day goes. Joe is up and confident. I am a little wracked with worry. I don't want him to do too much too fast. I can see, and he's told me, that he feels less pain and he feels confident in his therapists treatment. He said that she's open, interested and like to problem solve. He said that her little class on lifting a wheelchair out of a trunk was born after she listened to the question, asked a few questions, and then designed a 'lift' ... finally teaching it to him. He liked the fact that she saw the challenge in the question and was engaged by it, not dismissive of it.

So ... I'll let you know tomorrow how it went.

Who Holds The Camera?

Yesterday, on coming home after a really nice day, I spotted a man filming me on his camera phone. I was coming up a curb off a busy intersection. There were a lot of people at the curb so I couldn't make and immediate right and get out of the line of sight of his phone. So I had to simply come forward. He filmed me for a few more minutes, then moved away to where I could see him playing back the film, showing a friend who looked really uncomfortable, and laughing. I imagine that, right now, he's adding music or editing it to hit YouTube or some other social networking site.

For the past year or so I've done an image search for 'fat man in wheelchair' on Google and looked at YouTube videos to see if my image is in any of those places. I've been photo attacked before - I manage to frustrate the photographer probably 90 percent of the time because I've come to see them as just another hazard on the road that I have to watch for when I'm out in my wheelchair.

For a few seconds the existence of that man and that video ate at me, caused my stomach to churn and gave me the exact same back sweats that I used to get going down the high school hallway - anticipated bullying may be just as bad as the event itself. Then, I decided that I would think about this on the rest of the way home and that by the time I was home I would be done with it. I was not going to carry it around with me through the evening and into the days and weeks afterwards.

I thought about this two ways. First, the motivation that this man had to film me, to show that film to his friend, to laugh at what he saw, tells me all I need to know of him. This is a man who would rather spend time doing something cruel than something constructive. This is a man who thinks that pubic humiliation of another person - he knew I saw him doing it, he knew I knew he was laughing at me - was entertaining. This is a man who exists in a mind frame that I cannot understand, that I could not live in, that I have trouble even conceiving. He does not honour my personhood, I do not honour his - that at least is reciprocal. I don't need, or even want, his approval. The people who watch and laugh at this should it ever make YouTube, I need nor want little from them as well. they simply add up to the mass of human beings that willingly partake in cowardly anonymous abuse of others. I fear them, and the power they have to tyrannise, but I wouldn't want their approval had they had any to offer.

Second, I will not be terrorised out of living my life in the community. Joe and I had had a nice day, we were going to continue to have a nice day. I owe it to Joe, but mostly I owe it to myself to shrug off the experience - people can be cruel, I get it, I've learned that, I'm not surprised by that - and move on. I understand political terrorism. I have come to understand social terrorism. Both kill. One in spectacular numbers all at once. The other in spectacular numbers, one at a time. I will not be their victim because they have nothing I need or want, they can heap shame on me, they can call me names, they can equate my weight with my disability with my worth, I don't care. They can't hurt me.

I am loved.

I have been claimed.

I have purpose.

I live the best life I can, I do the best that I can, I want the best for others.

None of these things can be seen in a picture. None of these things can be seen on YouTube or Facebook or where ever else people post pictures. Those who see me without seeing me will be commenting on someone other than me. They will be commenting on the 'fictional me' that they create in their minds, they will write stories and biographies dipping their pen into the inkpots of stereotype and bigotry. They will hate the man who they think they know just from seeing a picture. I am not that man.

I am fat.

They think that they know what that means.

They don't.

I do.

That's why I win.

They lose.

Fleeing

I'd always thought it was just me.

I have that problem.

There is a fellow who I run into on a regular basis. The first couple times I ran into him, I nodded a silent acknowledgement. He's a power chair user, I'm a power chair user, it's an exclusive club, I figure a brief gesture of 'hello' is warranted. Both times, he pointedly ignored the gesture and sped up. OK, I get the message, you don't want acknowledgement. Perhaps it was because I was a stranger. Perhaps he doesn't hang with or want to be seen in any kind of, even fleeting, relationship to others with disabilities. Whatever, his reaction to me is fairly intense every time. Like he wants to get away from me before I go all 'greety' on him again. He need fear not, I'm good with respecting his wishes to go 'greetless'.

Downtown here there are a fair number of us in scooters and wheelchairs. Most of us nod to each other, a few of us don't. Cool. I've lived her long enough to know who does and who doesn't. I've been helped out by a few times having someone roll up beside me and tell me that my tire on one side needs air. I've done the same for others. I had a woman, once, stop me and tell me that a new store in the area had rearranged the interior and is now accessible. She was bubbling with excitement and bags hung off her chair. I thanked her for the information.

Yesterday Joe and I were going over to get our hair cut and as I approached the intersection I saw that there was a wamble of wheelchairs. He was directly in front of me. He was staring at the red light, willing it to change. I pulled up beside him. This may have seemed like I was purposefully trying to make him uncomfortable, but in truth, it was the only place I could go so I could leave space for pedestrians to pass behind me. He was surrounded.

Suddenly, I felt really sorry for him, he was hating it. I almost thought he was going to cry, he was so uncomfortable. Sitting in a small group of fellow four wheelers seemed almost painful to him. When the light changed he shot across the road. In fact, a car was racing through and there was a bare miss, a near tragedy. But he was gone. We all, the rest of us, looked at each other.

One muttered, "asshole."

The woman next who rode along beside me said, quietly, "He fears in himself what he sees in us."

I said, "Shouldn't he be seeing community."

She just shook her head and said, "Trust me, his definition of community is very different than yours and mine."

Once cross the street we all went our separate ways, one old fellow joked that we should 'parade' more often. We all laughed. It was nice, for the most part, to take over a corner even if it looked like the special bus had just dropped us all off for an outing.

I wish he could have joined the laughter - but he was long gone, and perhaps, too far gone.

Helping to Help

On driving home from work yesterday, I noticed him sitting on the street, with his back against a shuttered store, beside a beautiful tawny dog. I'd noticed them both before, sitting there, but they'd not been around for a few weeks. Every time I dropped change into the young man's hands, I always regretted not having picked up treats for the dog. We had already planned to go out, I put the plan in the back of my mind for safekeeping.

And promptly forgot. The busyness of getting home and doing emails, checking Facebook, unpacking stuff from work, just shoved the safe, which was keeping the idea, into a dark and dusty recess in the attic. So as we were heading up the street, I saw them in the distance and cursed my forgetfulness. After warning Joe I spun the chair around. We went to a local store where we knew we could get dog treats, picked up two bags, got some change and were back out the door. All in the space of less than five minutes.

Back on the street, I was prepared. I felt a tad uncomfortable as it seem presumptive to simply buy something for someone else's dog, but I'd rather make a mistake of generosity than a mistake of miserliness. I rolled up to him and spoke, "I hope you don't mind but we've picked up a couple bags of dog treats for you dog. He looked up at me and grinned. "Thank you so much," he said.

I then took the change and couldn't reach the small receptacle he had out for people to lean down and drop coins into. I handed the coins to him and said, "I'm afraid I'll have to give these right to you, I can't get at the cup over there." He said, "That's alright, I understand," and took my change directly into his hands. I said, "Thanks."

I backed the chair up in preparation to head forward again. He said, "We've all got to understand each other and help out don't we?" I said that we did.

Throughout the rest of the evening I've thought about that interaction, I needed his help to help him. He was glad to give it, I was glad to give it. What crossed my mind is that I think that's true in all relationships where care is given or received. For it to go well both have to contribute. The contribution of the care receiver is often hard to see - overwhelmed at we are by the actions of the care giver, but it is there.

Joe cannot help me with my socks, if I don't help him do it.

It's easy to see Joe's contribution, harder to see mine.

My friend, from years ago, who had a little girl with Down Syndrome who she was going to teach to read, by hook or by crook, did so. It was easy to see her helping her daughter reading, it was harder to see that her daughter eagerly got up and sat with her to look at books, look at words, find letters. Without the daughter's participation, which helped the process along, reading would not have been accomplished.

Help is almost never given if help isn't given.

Hmmm.

The young man's hand reaching up to receive the change I had to give him, may have looked like an action solely based on his need to have money, it's harder to see, and I'm not sure anyone did, that he was helping me to help him. A hand taking can be a hand giving - and perhaps often is.

I, now, can't recall anyone that I've 'helped' over the years, that didn't 'help' back. Why has that been invisible to me until now?

A Halloween Roll Model: That's Me!

"Mom, that's what I want to be," he said with excitement, while pointing to me motoring by in my wheelchair. I had never thought of myself being the subject of someone else's costume and had a variety of conflicting emotions, some positive, some fearful. "You want to dress up like you are fat?" mom asked. "No, no, no," the son said excitedly. "I want to have a wheelchair and ride around like a kid in a wheelchair."

The conversation evolved that the boy had a friend in school who used a wheelchair and he wanted to go with his friend's parents and his friend to a local mall that has a Halloween night in the mall and kids can collect candy and other stuff from the stores in the mall. I've seen those here in Canada, malls providing a 'safe environment for kids to run around in costume and get to holler 'trick or treat' at the top of their lungs. Mom was still unconvinced.

"Won't your friend think you  might be making fun of him using a wheelchair."

"No, mom," he said in that tone that communicates that mom's understand nothing, "we will both have costumes on. We thought we could both be, like, pirates and the wheelchairs be like ships. We talked about how to do that but he told me I'd have to get a chair, his mom says we can rent one if we wanted.

"Any you are sure he won't mind?"

"No mom, IT WAS HIS IDEA."

"Really, why?"

"Because you get more candy if you are in a wheelchair! ISN'T THAT COOL!!!"

Mom just laughed and the delayed the decision, "We'll have to ask your dad."

"As soon as dad knows there will be more candy he'll say yes," the child predicted with confidence.

Now there are so many ways to look at this. Me, I'm sticking with this being a story of two kids who are conspiring together to do costumes that will get them the maximum amount of candy. Like kids all over Canada are doing right now. The kid with the disability is suggesting a costume idea for his buddy, in the same way that kids suggest costumes for each other all the time - remembering that candy and treats are their reason behind it all. That and the fun of dressing up of course.

Part of me wanted to ask myself questions about this, "will the typical kid see the pity aspect of disability which is the probable motivator behind the extra candy," or will he just enjoy rolling around with his friend, thinking they are brilliant for coming up with the costumes with the maximum candy reward.

Then I thought, why am I analysing this at all? Why am I caring?

Two boys are friends and are planning similar costumes. That's all this is. "But that one kid isn't a wheelchair user ---" yeah, I get that, but he isn't a pirate either.

I'm guessing the that boy in the chair adapts all the time for the boy without the chair. Now it time, as happens in relationships and friendships, for adaption to flow the other way.

I see it as fun.

What say you?

Service, Support and Success: The Direct Support Professional Newsletter

This month's issue is now out. Due to computer problems it was a day delayed in being sent to subscribers. The topic is Cognitive Ramping: Plain Language and Accessible Communication ... if you want this issue please email me at dhingsburger@vitacls.org . Please indicate if you want only this issue or if you want to subscribe to this free newsletter. Requests must come to the email address in order for the issue to be sent to you, requests left in the comment section or sent to my home address can not be processed. Enjoy!

Today's post follows ...

The Flow Past: Careful, there's a quiz at the end!

We travelled this week with the MV1 which is, for those who don't know it already, a purpose built vehicle for wheelchair users. I like it because it's a cool looking vehicle but I love it because I get to ride in comfort and bring along my power chair. Using this increases my mobility substantially. The thing about riding around in the MV1 is that it attracts a lot of attention. Really positive attention. Those driving by often can be seen turned around trying to see an insignia that tells them what kind of vehicle it is. It doesn't look like anything else on the road.

When parked, cars will pull up beside us and drivers  will roll down their windows to ask questions about the vehicle. Many know someone with a disability, some are married to people with disabilities, and they ask a lot of questions. What surprises me is that they as JOE a lot of questions. Oft times they will be parked beside med, in the passenger seat, sitting in my wheelchair, and they will look across me to talk to Joe about the comfort for wheelchair users. In every way they use the right language about people with disabilities, that's good, but they seem to think that JOE would know best how it feels for people with disabilities to ride in it.

I will never be confused for invisible.

Joe never has to say, 'Ask Dave,' when the question is about the experience of those with disabilities in the vehicle because, without prompting, I answer even though I'm seldom asked. There are questions that are unique to Joe, about the driving and the handling of the MV1, but most questions are about the fit of a wheelchair, the comfort for the passenger and such.And I feel I am uniquely qualified to answer those questions.

Some are surprised at me jumping into a conversation that is flowing by me, from driver on my right, to Joe as driver on my left. But I don't care if it seems that I'm either rude or pushy. It's my experience they are asking about then it's my voice they will hear. One person listened to me answer a question asked of Joe about how the ramp is to ride down, then, when I finished, looked back at Joe and re-asked the question. It was as if I needed a non-disabled stamp of approval and authenticity to be believed.

Lately I've been wondering if there is a subtext, another layer of meaning, to the purposeful exclusion of my voice from a conversation about my experiences. Why am I almost never invited in to a discussion about a mobility devise, for that's what the MV1 is, between two people who have no need of the device themselves. What is being said, one to the other - what message is being sent - why do my receptors not pick it up. These are otherwise nice seeming people, they are asking the right questions, they seem to be concerned about their wife, their husband, their son, there friend with a disability.

Are they looking for care provider to care provider contact?

Are they looking to interact with someone in like role?

Are they needing something from the interaction that I'm missing?

I don't know, what do you think?