Bright Red Lipstick

Wisdom.

Sometimes wisdom sneaks up on you and bites you on the butt. That happened to me yesterday. I noticed a few more comments on the blog that I wrote about Ruby's first day of school and went to read them. Mike had left a comment in which he reflected on the fact that he and I were both teased at school, that we both turned out 'ok'. Then he said something quite, for me, profound: I guess the bullies were wrong.

Well, slap me in the belly with a wet fish!

You know I always knew that it was wrong for the bullies to bully me. Always. From the get go. I understood that they were mean, nasty, kids - drunk on their own popularity. I got all of that. But somewhere deep down I thought that while they were wrong to tease me, they weren't actually wrong about me. That they just shouldn't point out my obvious flaws, failings and flab.

Even to this very day. Coming come a couple days ago we passed by a patio bar with a bunch of young men. All sitting with their shirts off displaying tattoos up and down arms and back. Why eagles are instinctively driven to land on men's nipples I'll never understand - I need to watch more 'Discovery' channel. We were almost by when one of them shouted, for me to hear, 'Hey, look at the big fat dude.' Instantly I was twelve years old, instantly I was back in a hallway scented with sweatsocks. Instantly I was angered. I knew what he thought about me. I knew he was right I AM a big fat dude. I just thought he was mean to point it out.

But he wasn't pointing out my weight. He was pointing out my decreased worth. He was pointing out that I wasn't worth his respect. That I wasn't worth the respect of others. That I had less value than him and his chums.

And you know what ... he's wrong.

The bullies from my past weren't just wrong to act hatefully. They were wrong to devalue me. They were wrong about my worth as a human being. They were just plain freaking, fracking, fucking wrong.

They should put on bright red lipstick and kiss my ass goodnight.

Yeah!

Thanks Mike.

A Warm Morning on a Cold Day

On a cold morning, I felt warmed. I was picked up by WheelTrans a little earlier than usual and as a result had a groggy head. The driver was nice, as she strapped the chair down she told me we had a long ride to the next pick up. It was a very long ride. I was lulled by the movement of the vehicle and eventually fell quite sound asleep. I woke as we slowed to turn and pick up the next rider. We parked outside a lovely suburban bungalow. A man a few years younger than myself was waiting, outside, for the bus. He walked with a walker. His steps were slow and careful. He gave a huge hello to the driver and brushed off her apology for being a few minutes late. He got on the bus and said ‘Hello, there buddy,’ with warmth and a natural friendliness. I greeted him as well.

The driver was busy getting him settled and strapped in. In those few minutes several people came by the side walk all of them calling out, ‘G’morning Leo!’ He answered back, calling each by name. One little girl, holding her mother’s hand, paused and said, ‘Have a good ride, Mr. Leo’ with a very serious tone in her voice. He thanked her and told her to be good at school. She assured him that she would be. She walked away and he said to the driver and me, ‘Nice kid.’

Finally we were on our way and as we drove by the bus stop several of them waved and called out, ‘Have a good day Leo.’

I said, ‘Everyone here seems to know you.’

Leo said, ‘Yeah, I suppose.’

‘That’s very cool,’ I said.

‘You know how they say, ‘it takes a village’ …’ he said.

‘Yeah.’

‘Well, it does.’

The 4th 'R': Ruby Goes to School

We called her first thing yesterday morning. It’s a big day for her. It’s a big day for all of us. Ruby’s going to school for the first time. She came on the phone her voice still crackling from sleep. As she woke into the conversation you could hear that she was excited about going to school. She’s going to take her lunch. She’s going to wear a new outfit. She’s prepared. And I hope she is.

Yes, Ruby is going to school and she can count to ten, reliably, most of the time. She can spell her name and, if you accept a pretty spacey Y, can write it out. She knows all her colours and can identify animals from around the world. She plays alphabet games, counting games, colour games and has the ability to focus on what she is doing for a long time. She likes learning and has occasionally brought things to her parents or to us and said, 'Teach me.' Yeah, she's prepared. I really hope she is.

But there are other things to prepare besides school lunches. Yeah, she's got to be prepared for the four 'r's' of school. Reading, 'riting, 'rithmatic and ridiculing the different. School was not easy for me. I did not fit into the social swirl of school and spent most of my time in fear of bullies and in search of allies. Friends seemed out of the question, I just wanted people around me that I knew wouldn’t hurt me. I was fat. I was ‘sensitive’. I was ‘stupid’.

Often held up for mockery by teachers – I made an easy mark for those in school who liked using social power as a weapon. I made my way fearfully down hallways. I found learning difficult in an atmosphere that made me blame my difference for the cruelty I received. It was a time of wishing. Wishing to be anyone other than me. Wishing I was anywhere else but here. Wishing the ground would open up and swallow me whole. But life continued and I went to school with sweat running down my back, year, after year, after year.

I cannot protect Ruby from bullies.

No.

But I talked to her about them.

She in the wisdom of a 4 year old, that wisdom that eludes us as we age, said, ‘But it’s bad for people to be mean.’

What I did want to do, God forgive me for saying this … is protect others from Ruby. Right now she is a truly loving kid, she looks to help where she can and most importantly, she is kind to others. But school can breed cliques and insensitivity. School can teach chemistry and cruelty. We all want Ruby to have a strong sense of values going in - she will need them to guide her.

Mike and Marissa have taught her well. For me and my part, I wanted to ensure, as much as I could, that she would not fall into those early habits of exclusion and snobbery.

When she asked me about my weight. We talked about it. Openly. She came to understand that I was just bigger than others. My ‘bigness’ doesn’t affect her ability to love me, to enjoy my company, to look forward to seeing me. Fat people must be OK.

When she asked about my wheelchair. We talked about it. Openly. She came to understand that I move differently than others. My ‘disability’ doesn’t affect my ability to buy presents, my ability to make her laugh, my ability to make her feel safe when frightened. Disabled people must be OK.

Ruby’s classroom will not be the same as the one I had. Then, people with disabilities were hidden away, educated elsewhere. But they are home now. They are here now. And they will be in her class. I wanted to ensure that she understood a bit more about diversity. She already lives in a building with people from other countries who have differing faiths. She already plays with kids who speak English accented with spice, who celebrate different holidays, who wear different clothes. She thinks its fun that other kids do things differently.

So she’s started school. And before she enters the door she’s already passed Diversity 101 and Difference 102. I’m guessing she’s on her way to discovering all that education has to offer. Including other kids.

Where's Here?

We were frustrated. We'd gone to an exhibit at the Art Gallery of Ontario and the elevator that went right to where the show was held was down for repairs. We were sent into the museum to find another elevator. We asked a guard who was nearly hostile saying as if we were incredibly stupid, 'I can't tell you where the elevator is until you tell me what floor you want.' I wondered if this was in an employee rulebook or something but I simply said, 'We're going to the second floor.' She pointed to the elevator which was just a few feet down the hallway she seemed to be guarding.

We got up to the second floor and there wasn't a sole around to give us directions, no signage was in place, we felt completely lost. After wandering around for a few minutes without orienting ourselves or finding anything in the way of directions when we started asking other guests of the museum. None knew where we should go. Finally Joe remembered that we were given a map to the building and pulled it out. This is funny in and of itself as Joe can't orient himself in our apartment after dark. But I, as a dutiful spouse, kept my mouth shut.

Joe studied the map for a few minutes and said, 'Where is 'you are here'?' Tessa and I looked at him in incredulity. Joe said, 'What?' I said, 'How can they know where you are when you look at the map? They can't put 'you are here' when they don't know where 'here' is.' Suddenly Joe got it and it struck him funny. He collapsed against the wall laughing. Tessa and I joined in and we howled for several minutes. We were a bit raucous for the crowd there but we couldn't stop.

This moment got us by the whole visit. When we finally found the exhibit, I spoke to the woman standing beside the sign letting us know that we'd arrived where we want to be. I suggested they put up a sign by the elevator indicating where the exhibit was, after all, it was the major exhibit. She said, 'But it's just off the elevator.' I said, 'The elevator is under repair.' She said, 'Oh.' I said, 'You need to put up signs or have someone give directions to people who have to use the elevator.' She said, 'We do have signs.' I said, 'Where?' She pointed to the sign beside her. I gave up.

All the way through the show I had a choice, to remember her dismissal of my suggestion or to remember Joe collapsed against the wall under an imaginary sign, 'You are here'. I chose the latter. It was a good choice.

Digest This

I was shouted at. Loudly. For a very long time. We were coming along Dundas Street from the AGO and crossing University Avenue. The light turned green and as we headed for the median, I noticed that it was a very poor curb cut. There were several inches between the tarmac and the ramp. My power chair does not do well with those kinds of cuts and I avoid them if I can. I decided that I'd zip around the median and thereby avoid the badly cut curb.

Two women were walking and talking together, I said, 'Excuse me.' They did not hear me. I said, 'Excuse me!' They did not hear me. We were almost at the median so I zipped up and cut in front of them to get around them. I must have cut it a bit close. Though I didn't hit them, I think I frightened them. One of them yelled out at me. Loud enough for Tessa and Joe to hear the commotion. 'You people take up the entire side walk. Like it's your right or something!!' Her friend must have shushed her because she continued, 'I don't care,' she said speaking to her friend, 'it's true they take up way to much space.'

I was mortified and when I got to the other side, with them and their anger behind me, I said to Joe and Tessa, 'Let's go.' They had stopped to wait for me, I didn't want a confrontation, I just wanted to get going. So we went on, Tessa asking me why I was being yelled at. Tessa drives a scooter and is more stable on curb cuts like that one but even so she noted how tall the lip on that curb was.

At first I felt badly. Like I had done something wrong. But then, as I calmed down from being embarrassed, my feelings began to change. Why are people who walk so oblivious to their surroundings? Anyone who had any experience with wheelchairs would notice that the curb was dangerous and difficult. But when you step over things, you seem to also be willing to step over people, over issues, over accessibility. If they can get around, everyone of importance can get around.

Now I wish I'd stopped and said something. Now I wish I'd faced that anger with reason. Not that it would have made a difference but I'd feel differently and maybe that's difference enough. People don't often 'out' with their prejudice - as soon as I stopped being a random wheelchair user and became 'you people' I knew I had tapped into a deeply held prejudice. As soon as I became an anonymous member of a devalued group, I became a target for pent up anger. As soon as I became a non-person, it became OK to harangue me on the street.

One of the difficulties in writing this blog is that those who choose to come here will get it. I think it's called, 'preaching to the choir'. I'd love to write something that she might read.

I wonder if 'Asswipe Digest' is taking submissions.

A Ridiculously Good Blog Post

So, I had a confrontation over something I didn't care about because of something I did. Does that make sense? Well, maybe I'd better explain. The headquarters for the Canadian Branch of Scientology is near to where we live. Near enough that we occasion by there at least two or three times a week. They often have people out on the street pressing passers-by into going in for an IQ test of some kind. Other times they simply pass out some kind of literature about their organization. Now I have my own private thoughts about Scientology, let it simply be said I would turn down the offer of a IQ test and I wouldn't want to take the literature. But they don't know that.

Why?

Because we've gone by there hundreds of times in the years that we have lived here and I have never once been offered a test or a brochure. They often ask Joe, who is right beside me, but act like I don't exist on their planet - which, I just realized, might just be the case. Anyways, over the last few weeks it's begun to really piss me off. Like when I was in school and there was a clique that I didn't want to be in but because I was never asked they never got to know that I wouldn't join them if I could. They couldn't be stung by my rejection because they got there first. Ouch. Yes, I'm petty sometimes. And so are you, over different things I'm sure, but we've all got the 'petty gene' it comes with the 'human not ape' gene. But the bigger issue for me was purposeful, or what seem purposeful, exclusion of people with disabilities. You don't have to look far for an issue to fight over if you are a wheelchair user.

As you can guess we were sailing buy and a woman who approached proselytizing like a bored waitress making minimum wage in a diner with backed up toilets offered a brochure to Joe. I bristled but did nothing. We were going to check the menu on a restaurant nearby to see if they had anything vegetarian in case we wanted to go there sometime. We looked. They did. We turned to come back. I scooted up ahead aiming for said proselytizer. I told her what I told you that they never, ever, ever, offered me information. I wanted to know if Scientology was deeply prejudiced against people with disabilities. If she'd been chewing gum, she'd have cracked it in the pause before speaking. 'Um, no,' she said. 'Hmmmm,' I said, 'then followers of Scientology must be uniformly bigoted against people with disabilities.' 'Um, no,' she said and offered me a brochure.

'Um, no,' I said and felt ridiculously good about it.

Grinning

A few moments from my day yesterday.

Moment One:

I arrived at work to find two boxes of Exceptional Family magazine on my desk. I was excited to have it because the first of an 8 part series co-written by myself and various members of the 'Personal Development Committee' at Vita was in this issue. The 'Personal Development Committee' is made up of staff members who, along with their regular jobs within the agency, provide training of topics of vital importance to members with intellectual disabilities. Self Esteem is the first topic and it was written with two young staff who run the classes. I had the great pleasure of giving one of those staff a copy of the magazine and watch him see his name in print for the first time. I didn't know a face could grin so broadly.

Moment Two:

We went over to our grocery store and found that the wheelchair aisle was wide open and waiting for us. As I went through one of the tellers called to me that it's been open every moment since I registered my second complaint regarding the need for it to be available. She finished checking out someone and as there was no one else in line she came over and told me that she has decided that she would make it her personal cause to remind the managers to keep the lane open for all to use. I thanked her and she grinned as wide as she could grin. I liked that she got it and that she wanted to be part of the solution.

Moment Three:

After picking up some groceries for supper and on the way out I was just starting to make my way down the ramp from the mall to the sidewalk. At exactly the same time a fellow in a manual wheelchair being pushed by another guy, started up the ramp. We saw each other at the same time. He waved for me to come down and they backed up. As I passed them the wheelchair user, a man maybe ten years my senior, said, 'We're always in the way aren't we?' I came to a halt and we talked about the 'in the wayness' we experience as people with disabilities. We didn't know each other, had never seen each other before, probably live very different lives - but still we had a connection that only he and I, at that moment, understood. It's awesome to have those times of connection wherein someone else just 'gets it'. I knew he liked it too because, you guessed it, he grinned at the short interchange and waved me a friendly goodbye.

Moment Four:

I came home and read the comments on the blog yesterday. Whoa! I didn't expect such a response! I was pleased at the discussion, for the most part, and loved the support from all of you. I felt myself, grin. For that I thank you all.

Flabbergasted - Need Your Opinion

I had an odd confrontation, though that may be too strong of a word, with a friend of mine who is a loyal blog reader. She and I don't see each other very often and when we do - she knows pretty much everything that's gone on in my life because she stops in here daily. We ran into each other by chance yesterday afternoon. Joe and I had tea with our neighbour Tess and then went shopping. Joe had to go buy a box, something that didn't interest me, so I told him I was going to go on a 'run' in my power chair.

I headed down the ally that runs behind our apartment building then popped south for a half block and then went over to Yonge Street. I cruised north looking at the store windows. I kept my pace up because I needed to be back in the time it took for Joe to buy a box and then walk home. As I was looking in a window that had been newly dressed, she called my name. We talked briefly. She told me that she had just been diagnosed with Diabetes and said that she'd been meaning to call me, knowing that I've been diabetic for a few years now.

A couple of months ago I had set about the idea that I wanted to reduce my insulin and begin following the doctor's dietary advice a little more rigorously. As a result of this, I've been off insulin for a month and I've cut my need of one of my diabetes' medication in half. My blood sugar is now almost one hundred percent of the time in the normal range. I rushed to tell my friend about this.

Instead of taking the information in the manner I thought she would, she was totally pissed off. She felt that I had kept this information hidden from blog readers and that I had an obligation to document the journey I'd been on with reducing and then eliminating some of the medications I am on for 'the sugar' as my friends from the South call it.

She left the conversation abruptly, very, very angry. I've sent her an email telling her that I was going to write about this but not, of course, mention her name. I wanted to think about her assertion that 'I owed' something to this blog and the readers. I didn't think I'd signed a contract and I didn't think that I gave up the right to privacy. I weigh what I want to tell here and often tell about my observations of the world and my reactions to what I see. This is different than telling what's going on personally in my life.

As a result of this there's lots I don't tell you, lots I don't think it's appropriate to tell you, lots of stuff I simply don't want to tell you. Human beings, I have always believed, have a huge right to privacy, a need for privacy and, I believe, that privacy is necessary for good mental health. This means there must be boundaries. All this went on in my head but then I began wondering what is going on in your heads, reader dears. Do you believe that blog writers have a responsibility to you ... if so what is that responsibility?

I have been painfully aware of the lack of privacy, in almost every aspect of their lives, that people with disabilities who live in systems experience. I have written about, lectured about, wrote programs about the issue of privacy. It is my fundamental belief that we share what we wish to share and we keep private what we wish to keep private. That's true in relationships with co-workers, with spouses, with blog readers. To me ...

Her response flabbergasted me. I felt a little unsure of how to proceed. I hadn't kept the Diabetes information from the blog for any particular reason, maybe I just didn't think it was all that interesting. I thought I'd come to you for your opinions about the issue of blogs, expectations and privacy?

Hey Sit Still

It's one in the morning and I'm up. In fact, I'm just in. We drove straight back from Boston after getting off work yesterday. We are both suffering from highway hypnosis and I'm having trouble even typing these words. The trip was uneventful, we ate in the car and stopped only fill the car's tank and to drain our own. There was the stop at duty free because we wanted to pick up some cheap beer and they had a Tim Horton's that was still open.

Home. Safe.

No blog until tomorrow. My post did make it on to www.foxnews.com - click the opinion button and maybe leave a comment. Lots of people disagreed with my point of view, add your voice to the discussion.

Soo... til tomorrow.

What Outsiders Know

It will not surprise you to know that I can be assertive. I've cultivated the skill of being firm without being angry. I use this a lot on children who stare at me. It astonishes me that parents often do not intervene in situations like this. Don't tell me they don't notice, they do. I am old enough to now begin to bemoan the lack of basic social skills training in children who stare at strangers, in children who play video games during breakfast, in children who whisper on phones in church. OK, sue me. Typically I look at the child, without hostility, and say in an informal but educational way, 'Don't stare, it's rude.' Then I break gaze and go about my business. It works one hundred percent of the time. Not once have I had a parent say anything to me about what I've said. I figure it's my contribution to the future.

Anyways, the other day, before coming down here to Boston we stopped in Belleville to celebrate Mike's birthday with his son Joseph, his girlfriend Marissa, and his two daughters Ruby and Sadie. We went out to a Chinese Buffet place and were eating and clowning around. It's sensational the way, 'I got your nose' and 'pull my finger' are such great games. Ruby was sitting next to me and I managed to figure out a broccoli game that actually got some of the stuff in her mouth and down into her tummy. We laughed, a lot. There was pandemonium at the table, babies being passed from lap to lap, little girls crawling over people and under chairs, teen aged boys finally getting some of the innuendo's we'd been making over the years.

It was so busy that it took me a while to notice a boy of about 10 standing and staring at me. When I saw him I immediately went to my 'teacher voice' but I did not speak, something in his eyes stopped me. I just went back to having fun, very conscious that the stare continued. I glanced up and I noticed the table with his parents. They were fighting, viciously. I heard faint sounds of swearing, while their voices were soft their body language was hard. These were people in the midst of a huge fight. They didn't even notice their boy leaving the table and standing staring at a big man in a wheelchair with a little girl's nose in his right hand and a little baby smacking him on his left side.

I saw his eyes again. There was such deep sadness in his eyes, no, no, there was longing there, no, no, there was a painful envy there. He wasn't staring at me, he was wishing he was there, part of it, he was immobilized by his imagining of having dinner where people ate, not fought, talked, not argued, played, not hurt. He was imagining being part of a family.

I hate being started at with hostility but it hurt to be looked at with envy. I knew what that boy wanted because when I was that age, I wanted the same thing. To be included. Odd how we in the disability field fight for the inclusion of people with disabilities into everyday lives, we fight for what we assume everyone else has. But it's not true. We need to fight for the inclusion of all. That people with disabilities might use the language of exclusion and the fact that we have articulated the meaning of inclusion - to bring these concepts forward so that they can be used to begin to heal a society wherein loneliness begins at home. Where family exists as a flicking figment on television. Where belonging is a marketing strategy. We as people who have known what it is to be separate need to use what we know to lead ...

not to follow ...


but to lead to a world where 'all' means 'all', where no-one is assumed to be part of the whole, where welcome is extended.

From the frontiers of bias we discovered the need to live within the community. We came home only to find that community no longer exists. Instead of wanting in, we need to build, to create and then finally, to welcome.

All.

Even lost little ten year old boys, who live with the unfulfilled desire that someone will sit down for supper and steal his nose.

Breaking News: Fox News

I have just given permission for my blog post The People Who Are will be up on the Fox News Site tomorrow. Now, here's the thing. They may change their minds, I don't know for certain. They just said that it will probably be there tomorrow. To see if they decided to post it and the reaction it gets, go to the site and then click the Opinion button.

See you tomorrow with a new blog post on inclusion.

The Sherpa

I noticed them go by. Joe and I were sitting having a cup of tea on a patio somewhere in downtown Boston. It was lovely as we were completely shaded and there was a tiny bit of a breeze. The three of them slowly walked by. He was a distinguished looking grey haired man who looked as if he was new to, and uncomfortable in, a wheelchair. Two young women were with him, they all looked enough alike to suggest they swam in the same gene pool. There was a brittle silence amongst them.

About half way through my green tea they came out of the store they had gone into. One woman was pulling a large square box on a dolly, a large, long, rectangular box lay resting across the arms of the wheelchair. They slowly made their way towards us. When they got close enough, I called out to the guy in the wheelchair, 'You know, man, they are totally using you right now.' He looked at me startled. I said again, 'Really, man, they are so using you.' Slowly his mouth formed into a small then larger smile. He got and he liked the joke.

The woman with the dolly walking ahead turned and there was a gasp from her. She said, under her breath, 'I thought he'd forgotten how to smile.' As he was passing he said something that I couldn't hear. But the woman pushing the chair did and she screamed with laughter. He was still looking at me and I knew he'd got a good one off because now he was chuckling. Sometimes I laugh just because someone else is laughing. Suddenly Joe and I were curled up laughing.

They made their way down the street.

Sometimes I regret my impulsively.

Sometimes I don't.

At that moment, I absolutely did not.

10 Rules of Engagement: How To Self Adocate

Again!

Accessibility promised not delivered.

Again!

Frustration and anger.

Again!

Confrontation and resolution.

If you are going to have the audacity to have a disability, you are going to need the ability to effectively advocate for yourself. It is imperative that you know how to use your voice, how to control your temper, how to ensure that you control the flow of the confrontation and resist the impulse to be placated or bought off. From me to you, my tips on advocating when angry.

1) Breathe: It is important to think through the situation, you need some clarity, take a breath and slow down. The heart is probably racing, the blood pressure is high, the situation has caught you unawares. You need to be able to be firm, not hysterical. You need to be plain spoken, not vulgar. You need to be clear on what the issue is, not jump from topic to topic. So take a breath, when you know what you want to say, start - you have the opportunity, sometimes, to control when the confrontation happens. If the timing doesn't allow that, take a breath anyways, focus your mind quickly and ... start.

2) Respect: You want respect not pity. The issue is almost never your disability, it's inaccessibility. Make this about their attitude, their behaviour or their environment not your disability. Remember we are most often disabled by external factors. I once flew across the ocean, got in a car and drove 200 miles, only to arrive at a hotel and suddenly become disabled because they didn't bother to honour my request for an accessible room - they disabled me. So keep it clear, this is about them primarily.

3) Don't Barter: Often you will be offered a free room, a free meal, a certificate for the future. OK. Fine. But that's not good enough. Let them know that you are not complaining because you want financial compensation, you want moral compensation. You want to ensure that this doesn't happen to another person with a disability, you want the situation rectified, you want to know what they are going to do to change things so that accommodation offered is given. You want a 'right now' fix and a 'long term' solution. I get the impression that most managers think you are just doing this for a free ride - let them know that's not the case.

4) Respect: Yeah, this is here twice. don't hammer a clerk who has no power and is paid minimum wage. Speak to the manager. Even then, don't do to them what you don't want done to you - don't swear at them, don't call them names, don't cast aspersions on their character. This drives them nuts! They want a reason to dismiss you, don't give it to them. Be angry, be frustrated, be firm but be respectful at the same time. Even if they are not understanding or, ultimately, accommodating - don't give in to the urge to 'poo on their heads'. Go higher, go postal - write a letter or an email. They are more afraid of those who go forward with complaints based on anger and reason rather than anger and vitriol.

5) Power: Manage what power you have well. Saying, "I'll never do business here again," means that once you are out of the door - problem solved. Saying, "When I come back I don't want this experience again," means - oh, my, this is someone who will be back and will be expecting change. Too, speaking loud enough to be heard by others is great, they don't want to look like they are upsetting someone with a disability or a parent of a child with a disability. But screaming just pisses everyone off, even those who would be your allies. As well, create enough of a problem that they can't get on with other things until this is settled but don't be purposefully obstructive to others. It unsettles them if you say, 'I'll wait while you deal with this other customer.' The other customer will appreciate it and your credence as an opponent grows.

6) Platitudes and Apologies: Don't let them say, 'I understand' ... because if they do not have a disability, do not have a child with a disability, they don't understand. I hate it when non-disabled people use that line on me. They can imagine what it's like to live using a wheelchair but they don't know and because they don't know they don't understand. Stop them with a clear, 'You don't understand, don't patronize me!' They are using some crap training to try to get you calmed down and on side. Don't let them do it. Apologies are attempts to derail discussion and make it look like you've been heard - the only apology worth anything is change. Be clear on that.

7) Respect: It's back for a third visit. Always speak respectfully of your life with a disability or your child with a disability. Now is not the time to pull out the word 'cripple'! Don't go on about how hard life is for you. That makes disability the issue again. Speak of yourself and your life with respect - if you go for pity, you move them into a position of superiority. Then what they give you will be out of their magnanimity rather than because you are due your rights as an equal.

8) Settle: They say 'never settle' ... I disagree. If something can't be done in the moment, settle for a promise and a plan for something changing. If something can be done, once it's done, it's done. Carrying on and on about it once it's over is counter productive and makes it seem that all you are doing is attention seeking.

9) Close: Finish when you are done, this should be at least 3 or 4 minutes past their toleration. They should be uncomfortable with the interchange. At some level you have to make them feel. Learning happens when emotions are put with facts. You want them to fear this happening in the future, you want them to do everything they can to avoid other firmly angry, appropriately aggressive disabled people. So, control when it ends. Leave the situation with calm and dignity, storming off makes you look like a two year old. Be adult all the way through, right to the end.

10) Follow up: Go postal, as mentioned earlier. Write an email, write a letter, communicate in some way that you expect change. You will, when angry, be tempted to say, 'I'm going to call your head office.' The reason you say this is that it is a really good idea. Don't threaten and then not do - they will come to not believe that you will have the gumption or the energy to follow through. It takes only a few minutes to put thoughts down on paper or in an email message. Take the time and, of course, copy it to the establishment in question.

I've gotten really good at confrontation, I don't like it, I don't want to do it, but I'm disabled, so I have to use my voice over and over again. It's part of what it is to be different in a world that honours uniformity. So, what tips do you have because I'm sure I'll have to do this ...

Again.

Bob and His Contest

I got so excited when I saw them, I just simply forgot. In the joy of discovery that only those with the true 'shopper gene' have, I rushed to purchase. I pictured my pleasure being ultimately reflected on the face of two others. Gift giving is cool, particularly gifts for no reason - just because. What did I find? I found six tins of sugar free mints each with a different logo from a different British Football Club: Chelsea, Arsenal, Manchester United, Celtic, Liverpool, Rangers. We were visiting Mike's son, Joseph, who is a huge football fan and were going to give them to him almost right after buying them. The other set I bought for Bob, the superintendent of our building.

Only after buying them and rolling out to the car did I realize that Bob died a few months ago and our building has a completely different set of staff. Odd, though, how in the joy of the moment, someone came alive again, vividly alive. Odd, though, how people stay stuck in our minds. How people, unstuck, live again for a few moments. I remembered sitting waiting for the WheelTrans bus outside chatting with Bob and having him remember his time in the UK and how Football was something he really, really, enjoyed.

So I had a gift of six tins for Bob. Somehow, I think Bob is somewhere laughing, both at my folly and at the sheer pleasure of being remembered, again.

What would Bob have me do ...

I think he would want me to give them to someone who loves Football. So if you are a Football fan anywhere in the world, write a comment and I'll put everyone's name in a hat and pull out a winner and send them to you.

This reminds me, 'Home Safe: Keeping people with disabilities safe in services' has just been released. I owe someone a copy of it, someone who won a cover contest, you know who you are - could you send me your address again and it will go out in the next days mail. Sorry about this but I am not only physically disabled, I am also organizationally impaired.

Good luck to those who enter ... how about this, I'll take entries for four days.

Fathers and Sons

Riding the transit system in the 'special bus' is interesting. Given that every morning I go a different route, I get to see different parts of the city. Given that every other person on the bus has a different life, we go to vastly different places. I now know of services that I never knew existed. It's cool to be plunged into the diversity that is disability.

The other morning I was on the bus with two women. One in a power chair, the other with a walker. Neither were chatterboxes and responded with civil grunts to my 'Good Morning'. I am constantly reminded that being a morning person I can be outright annoying. We dropped of the woman in the power chair at her work place and then we drove for a very long time to get to the next drop point. Here we pulled into a big parking lot and we drove by a 'Pain Management Center'. The bus turned around and then pulled right up beside it's door.

The woman with the walker got up and I could see in her careful movements a long history of living with pain. She glanced at me and wished me a good day and then let the driver guide her down the ramp. I looked out then and saw a father and son heading towards the door. The boy turned to look at the woman getting off the bus and I saw that he was maybe 6 or 7 years old. Even so, he walked old. He walked like little boys should never walk - as if life itself hurt. His dad, a big strapping man, was being bright and cheerful and joking with his son as they headed towards the door. The boy turned to his dad with bright eyes and then for a moment stopped and laughed at something his dad said. I'm sure I saw tears form in his father's eyes as he watched his little boy just stand and laugh.

The laughter over the long, long walk to the clinic began. They, father and son, made that walk together as I watched.

It's not fair.

We shouldn't live in a world where 6 year old boys live in pain.

We shouldn't live in a world where father's watch their children suffer.

But we do live in that world.

Pray God that we all have someone walking beside us making us forget, for just a moment, while we laugh.

Count Down and Out!

I can barely type!

My very fingertips are sore.

For some reason, beyond my typical reason, I ordered a wheelchair aerobics DVD from Amazon. It came the other day and I decided to try it yesterday morning. My. Oh. My. The 'warm up' ended with me 'worn down'. I quit with everything hurting. How does it come to be that stretching hurts! I didn't know that a 'head roll' could be so noisy. So this morning I got up with the intent of getting past the warm up and into some of the exercises. I made it about 10 minutes longer than yesterday and then had to stop.

This surprises me a little bit because I can push my self a fairly long way. Over the last few months I've been concentrating on asking for Joe to push me less and for me to push over carpet and up hills more. I figured it was my only exercise and I should at least try. Now I can easily push myself right from the apartment down a carpeted hallway, through two sets of doors and down to the road and be sitting waiting when the car pulls around to pick me up. This is a vast improvement. I think that's what gave me the courage to order the DVD.

But. My. Oh. My. This perky blond woman looks out at me from my computer screen and then tortures me with 'three more' ... and of course 'three more' is actually more like six or seven. Never let an aerobics instructor do your taxes! My perky instructor doesn't even break a sweat nor look like her shoulders are screaming in pain. My less than perky self, however, is grunting and groaning and forcing my arms to do what she does.

One of the nice things about getting up ridiculously early in the morning is that there is no one around to watch me punch the air, three more, two more, one more, let's do it again ... So I sit in the faint glow of the computer screen doing head rolls and shoulder rolls all so that I can roll more effectively.

My favourite part is where she talks about pulling your stomach in so that my belly button touches my spine. Um, got a yardstick dearie?

I've got to go shower and then get to the bus and hope that the drone of the engine will drown out the echo of ...

three more, two more ...

To Jennifer From Dave

Dear Jennifer Aniston,

I wasn't going to write you this letter. Really, I wasn't, even though readers of this blog asked me to publicly and privately. Most wanted me to put into words the anger that they felt towards you and the controversy that your insensitive use of 'R#tard' had sparked. To me your lack of public apology told me everything I needed to know about you. Until yesterday I thought I had said all I had to say.

But then I learned of him.

Of Ernie Hernandez Jr.

You don't know his name do you Ms Aniston? That's no great surprise. Ernie lived his life quietly being distinguished only by his desire for do a good job, his love of his personal independence and his manner of contributing to the lives of those he cared about. But his freedom came at a cost Ms Aniston, do you know why? Well his mother reported that he would come home and tell her about people in the mall teasing him, taunting him and calling him 'r#tard'. He was fearful but his fear didn't stop him. He had the kind of courage that you and I can only dream of. He wanted to live in the community and he would do so even though there were bullies out there who attacked his very existence.

You may wonder Ms Aniston what this has to do with your casual use of a word. Well, here's the thing. You made the word 'cool' to talk about, your defenders loved the opportunity to tell everyone that you had a God Given Right to speak your mind. Here's some of the company you find yourself in, I am not altering or censoring the words written, their impact may hurt other readers, you, of course, may not care:

You people are retards that are spinning this into something offensive and not politically correct

This PC has gone too far. It is friggin retarded. Unbunch your panties you liberal pricks.

i act like a retard so come slam on me now....piss off everyone is human and says and does things in there life thats others might not think are "right" fredom of speech people we are in AMERICA.

You all need to fuck yourselfs and the retards you rode in on.

Lovely.

Does that give you a sense of what Ernie Hernandez Jr. experienced when he was out for a walk or meeting with friends? Does that give you a sense of what happens to people with disabilities? You see no one much takes the word 'r#tard' seriously. No police officer, few teachers, probably no security guards would intervene. It's a word that everyone uses, even America's Best Friend, Jennifer Aniston. You normalized hate speech. You took a hateful word and trivialized it's impact. You brought out the hate hyena's to bay all over the Internet, all over neighbourhoods, all over schools.

Do you know what happened to Ernie Hernandez Jr., Ms Aniston?

Well the police report stated that the murderous attack on him was violent and vicious. He was stabbed multiple times. He died in the community that he had fought to live in. He died after reporting time and again about being called names, being taunted, hearing 'r#tard' echoing on streets and in passageways.

Modesto California has lost a citizen.

We, people who have disabilities, have lost a brother.

Ms Aniston, you and your thoughtless, meanspirited, language made his life a little harder. You have made our battle longer.

I did not know Ernie, but I mourn him. I mourn that he died too young. I mourn that he experienced social and verbal and finally physical violence. I mourn that the world he wanted to live in did not embrace him.

Ernie, brother, rest well.

Dave Hingsburger

In Good Hands

(Today we have a guest post from a friend of mine - Susan. She wrote this a while back and I've asked her permission to reprint it here. I like this post a lot. So, enjoy another voice today.)

"I'm scared, Mom."

He was scared all right. I could see it in his eyes and in his body movements. We were walking through the new Terminal 1 at Pearson International Airport. He had just checked his baggage and we were heading toward the departure gate. He was wearing the new jacket I had bought him at Costco on the way to the airport. It was the top half of a rain suit, perfect for English weather. The bottom half was safely stowed in his duffel bag and on its way to the belly of the giant air bus he was about to board.

"I'll be praying for you," I said. "You'll be okay. God's brought you this far..."

"Yeah," he said with quiet resolve. "I'm scared, but I'm still going…"

David had just finished his second year at Queen's University in Kingston. While at school that year, he learned about the opportunity to go to England for a study term and had thoroughly and carefully explored the possibility. He applied for a bursary to help with the cost and filled out all the forms on his own, calling us often for reassurance and affirmation that this idea was a good one. We talked to him about the difficulty someone on the autism spectrum would have getting through airport security, finding the right seat on the right plane, and then finding his way around a strange airport in a strange country and ending up, finally, at the right destination but where everything was new and there was no structure in place ahead of time. We thought it would be best if one of us traveled with him. David knew he needed some help, but he didn't need our help. Instead he approached Disability Services on the Queen’s campus and got the name of someone his own age who would also be going on the trip - someone who would watch out for David and was willing to provide any support he might need. "Peer support". He was identifying for himself what his needs were and building his own support system around himself. Yup, our Davie was growing up.

We met El-amin at the airport, just under a massive grey pillar marked "J" and next to the Air Canada counter. It was still half an hour before they could register for their boarding passes so we had a bit of time to get acquainted with him and his parents. Like me, they had come along to see their son off. El-amin was an only child, I soon found out from his lovely, doting mother. Her head was elegantly wrapped in a beautiful scarf. El-amin was very self-assured and told me that he was a philosophy major, just finishing his third year.

"Do you believe all that stuff they teach you?" I smiled at him.

He laughed in reply. "No, not any more. I did during my first year, but it didn't take long to realize that all these cool things that sound like the truth, can't all be the truth. You have to sort things through for yourself."


We visited for a while and then his friend Emily arrived who was also going on the study trip. She was just as friendly and accepting as El-amin. I stood and visited with her parents while the three students procured their boarding passes and then stood in line to check their baggage.

We parents were all excited and obviously apprehensive a little about sending our children across the ocean, even if it was just for six weeks. We exchanged stories and got to know each other a bit. El-amin and Emily soon led David through the baggage checking process and I was relieved to see them take his bag across the counter, having feared all this time that it was overweight and not knowing what we'd do if it was.

Rejoined by our children, we left the baggage checking area and drifted over to Gate 8, where we would be saying our final goodbyes. We were joined by a few other students who were on the same study trip and knew each other from school. We all hung together for a bit longer, looking at the planes out the window, and then suddenly everyone was hugging and kissing, and saying their farewells.

I couldn't believe what a warm and wonderful young man was El-amin. His parents told me that one of his jobs on campus was to welcome International students helping them to adjust to life in Canada on a strange campus. He seemed instinctively to have just the right idea of how much support David needed, while at the same time giving him enough space to maintain his self-esteem.

"C'mon, Dave. This way." El-amin and Emily waited for David to catch up before they all three disappeared behind the sliding doors where they would undergo their security checks. David turned to give me a characteristically stiff hug and then he was gone.

We parents all looked at each other, suddenly bereft of our children. I could see worry and concern behind their smiles and in the reassuring comments they made to one another.

"They'll be all right," they kept saying over, and over.

I had a sense that I wasn't quite fitting in to the situation somehow. I was actually feeling a bit guilty that I wasn't more worried - like these other parents so obviously were. Here was my kid with a fairly significant disability headed across the ocean for six weeks. Wouldn't a "good" parent show the same concern as these others? My kid has a disability and I wasn't worried. Yet, all the parents of these "typically developing" kids obviously were.

I thought about it as we all parted ways and I headed back to the parking garage, but it wasn't until I was telling the story to my friend Belinda on my cell phone on the way home that all my feelings began to gel. David had matured enough to realize what kind of support he would need, and took the steps to arrange for it himself. God had provided El-amin - and Emily – the perfect traveling companions for him and would he not meet all of his other needs as well? What did I have to worry about, really?

David is often overwhelmed with anxiety sometimes to the point of being temporarily incapacitated. He struggles in social situations. And he was headed for England. We, his parents, who had been the primary buffer between him and the rest of the world, were staying behind. But unlike the other parents in that terminal, I was confident my kid would know Who to call on in times of trouble when I'm not there. And I know exactly in Whose hands ultimately he is in.

Godspeed, Davy-boy!

Small C, Big P

Something's been bothering me. I've tried to push it to the back of my mind, primarily because of the pigs. But last night as I lay in bed trying to sleep it kept raising into my consciousness and even pigs swimming a synchronized ballet couldn't push it back. Nanny McPhee (small c big p).

Clearly I've changed between seeing the last one and the new one that's just opened. I loved, without qualification, the last one. I did this one too, for about a day. I laughed, like a delighted child, at the antics of the pigs and at the burping crow and at the pen stealing elephant. I liked the idea that children were learning lessons which were taught with magic and fun and love. I was thrilled by the cameo performances of some big stars, Fiennes deserves an Oscar for his few minutes on screen.

But.

Perhaps it's best to tell you a bit about the plot (no spoilers here). Nanny McPhee (small c big p) shows up and she's got a distinctive face. We're supposed to think it ugly. She's got moles, a unibrow, a thick nose and one tooth that escapes her mouth only to take rest on her lower lip. People make jokes about her appearance yet she goes happily on her way respected by all who know her. However, as the children learn their lessons she becomes more traditionally attractive, moles disappear, eyebrows separate, magic rhinoplasty alters her nose and so forth. By the end of the movie she has a traditionally beautiful and somewhat radiant face.

I was delighted to see her again when she showed up on the screen. I was delighted moles and all. Knowing who she was from the last film, I found myself liking that face - the first face. I already knew that she had a beautiful character and that character shone through her eyes and informed mine. When the moles began to disappear I was disturbed. I closed my eyes and wished them back but, no, they were gone. As she grew more conventionally attractive I grew more disenchanted with what I was seeing. I didn't NEED Nanny to change to find her beautiful. I didn't NEED her to be anything but 'Nanny In The First Place'.

I know, I know, films and literature constantly say, out loud, that beauty is only skin deep - but then most stories give a different message. Ugly is criminal, ugly is deviant, ugly is repulsive - it's beauty, not the beast, that is holy. Isn't it possible that attractiveness is about more than clear skin and sculptured brows? Isn't it possible that we as viewers, could have come to see her become magically more beautiful WITH moles - wouldn't that be more like the miracle of true transformation. That the appearance of beauty happens in the heart of the viewer rather than on the face of Nanny McPhee (small c big p).

Emma Thompson, the star of the film also wrote the film. I challenge her to make Nanny McPhee (small ... oh you get it by now) part 3 - but this time do something magical. Let her true beauty stand out - let her in dignity be 'Nanny With The First Face.' It's a face we already love - we don't need it different.

The People Who 'ARE'

It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about products that protect from fire. Last I looked there's only ever been protests about the use of a word that demeans a group of people.

No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt.

People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so? The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others?

It's time to recognize that the 'R' word is an attack against who people with with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the word and the attack it represents is simply a result of the fact that they do not take the 'people' who wear that label seriously. The concerns of those with intellectual disabilities have always been diminished and trivialized. There is a sneaking suspicion that they 'don't understand, poor dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified.

The people who 'ARE' what the 'R' word refers to have a long history.

They have been torn from families and cast into institutions.

They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.

They have been held captive, have been enslaved, have had their being given over to the state.

They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts.

They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt.

They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.

They are the least likely to ever be seen as equal, as equivalent and entirely whole.

They are the victim of some of the most widespread and pervasive prejudices imaginable.

They are those that the Nazi's thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats.

They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out.

They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship.

That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world.

That they are a 'community' is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future.

That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat.

They are a people.

They ask for respect and receive pity.

They ask for fair play and are offered charity.

They ask for justice and wipe spittle off their face.

They ask to silence words that brutalize them and their concerns are trivialized.

They ask to walk safely through their communities and yet bullies go unpunished.

They ask to participate fully and they are denied access and accommodation and acceptance.

And this is NOW.

This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice.

It is a voice not yet heard.

It is a voice not yet respected.

It is a voice not yet understood.

But it is speaking.

And when it is finally heard. The world will change.

The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

The Battle!

Three days ago we went to our local grocery, which had just opened after going through a several month closure due to renovations, and I noticed something slightly odd and yet wildly infuriating. They have 7 or 8 checkout aisles, one of which is designated as a wheelchair lane. It's a lovely lane for me especially when I am in my power wheelchair. I'm wide, it's wider, the lane is widest - a lovely fit wouldn't you say. It's so much better than what they had before. So, anyways, back to being annoyed - which through a mammoth act of will I manage NOT to be all the time. They had all the aisles open, that's ALL of them, except the wide wheelchair aisle.

Now it doesn't take a lot of deep thought or even a strategic plan to figure out that if only one is open it should be the aisle that EVERYONE can use. But, no, they were all open EXCEPT the one that everyone could use. I ask to speak to a manager. He comes out. How do people that young get to be managers, he seemed be be seven days older than sperm. Anyways I talk to him and explain the principle of access for all and that if one lane is open it should the the one that everyone can use. He nods gravely and says, 'I'll get that fixed by the afternoon.' This was first thing in the morning and it was going to take him several hours to move a cashier from one terminal to another. I nodded stupidly because I was at a loss for anything else to say. He did promise me though that from that day forward the accessible aisle would be open. OK.

So we go back today after lunching with a friend. We'd had a lovely time at lunch, laughing, talking, and solving the problems of the world. So we went shopping with a lovely feeling of having had good food and better conversation. Arriving at the store I see ALL the aisles open except the ONE for ALL. I ask to speak to the manager, hoping against hope that I was going to get the same guy so I could yell. But the only manager on was the grocery manager. He came over to speak to me and I pointed out the 'problem'. I asked, 'Is this the store's way of communicating to people with disabilities that you'd rather we not shop here?' He assured me it was an oversight. I told him that I'd already made this comment to the manager a couple days before.

He had the aisle open within a few minutes and I was able to both shop and check out.

You know what kind of pisses me off. There are so many bigger battles for us, as people with disabilities to fight, that we shouldn't be worn down by stating the obvious to the oblivious. We shouldn't have to whittle common sense to a point at one end and then use a mallet to smash into the ears of those who neither think or, it seems, listen. We should be fighting the big battles of rampant un and under employment of people with disabilities, the rampant physical, sexual and financial abuse of people with disabilities, the constant nasty remarks of friends like Jennifer Anniston. We have big battles but we also have strong wills and loud voices - but we grow weak and hoarse trying to pay for our freaking groceries.

Sometimes I simply despair ....

A Blog For A Slow Day

I get asked a lot of questions about being in a wheelchair. The most common is about my gloves. Why do I wear them? Is there something wrong with my hands too? Wouldn't things be easier if I didn't wear gloves because then I wouldn't have to take them on and off, this one is usually asked, impatiently, when I take my gloves off in a line to pay and then put them back on when I leave.

In all my borne days I would never have thought that gloves were such a conversation starter. Too, I find it interesting that people will just out and ask me questions about something that could be personal without a moments thought about intrusion into my day. No one ever, that's not ever, asked me anything about my clothing before I sat down in a wheelchair. But nonetheless, gloves seem to be a curiosity.

So for those desperately wondering. I wear gloves for the same reason you wear shoes. For transportation, for protection and for comfort. I also use them for brakes. I use them when I want to accelerate. They aren't, though fashionable, a fashion accessory.

All this is in aide of telling you, especially those who push their own chairs, about these gloves I found. I'm on my 5th or 6th pair of gloves since I started using a chair. When my last pair ran out I was in the States so we stopped at a Wallmart (sorry) and I went looking. I found these wellslamont gloves. I tried them out in the store and it was awesome. My grip on the wheel is stronger, my ability to brake is increased to the point that I can go down really steep grades. They are perfect for wheelchair use.

I bought a set in every colour. They are really durable and I think they'll last me at least several years. So bring on the hills. Bring on the long stretches. I'm set to go ...

"Hey, so why do you wear gloves?"

And odd question, don't you think, from someone wearing shoes.

Hair Today

Here's something weird.

I have to go get a haircut this afternoon. I go to a barbershop a couple blocks from home. The first time I went there I got my hair cut by a woman who did an OK job. Just OK. Now, I don't have much hair, so OK isn't really good enough. But now, every time I go there she insists to the other barbers that she alone is my barber. I'd really like one of the others to have a go but don't have the gumption to say so. Without a doubt, today, I will get an 'OK' hair cut.

Yet I'm the guy who writes politicians and 'letters to the editor' and makes phone calls to assert my point of view. To me that's much easier than saying, 'I'd rather someone else cut my hair.' I don't know why that is ... I can't even imagine saying that to her. I don't want to hurt her feelings even though I don't like her work. Like I'm sure she spends any time worried about me at all!

Assertion is a funny, funny, thing. For me it's easier to assert myself over an issue or a point of view than it is for something personal. It's easier to protest over the treatment of someone else than it is about the treatment I get. In fact some of those on the 'other side of the issue' might find me a bit of a bulldog when it comes to sparring over an issue. I admit, it's true, I can be pretty passionate about what I believe - I just can't do it with a barber! I'm sure some of you readers are the same way.

So barring going to another barber shop entirely - which is hard because I go where I go because it's the only accessible shop that doesn't charge me an outrageous fee, I'm getting the same cut from the same barber. Some of the places near me charge 30 bucks for a hair cut - that's, like, 25 cents a hair. I tried negotiating at one place and the fellow looked down at me, which happens a lot when you are in a wheelchair - both literally and figuratively, and said, 'We do quality work.' Well, yeah but cutting an acre lawn is surely more expensive than trimming a postage stamp yard.

Oh well, today is hair cutting day.

And if nothing else, I got a blog out of it.

Breaking News

I'm sitting here crying.

Actually crying.

I just went to the Ford on Ford website and the postcard using the 'r' word is gone.

Gone.

This means ... we've won.

I've not heard anything from the Smitherman camp about the postcard being removed. In fact I checked an hour ago it was still there, then just before bed I checked and it's gone.

I've said, 'Change is the only apology that matters.'

So Smitherman and his team, I accept.

I know that what they were trying to do was highlight the kind of statements that a fellow candidate has made in his career. I know that it's difficult to educate about prejudice without demonstrating it. I know all that. However some words are beyond tolerable. Slurs against an entire people belong in that category.

It is important here to acknowledge the support of Rolling Around in My Head readers. I also want to especially thank Vita Community Living Services and Special Olympics Ontario for weighing in with powerful letters of support. It takes courage to stand and be counted. You all did. These agencies did. Rah you. Rah us.

We, as disabled people, as allies of disabled people, need to continue to use our voice productively and creatively. We need to discover the power we have as a community and as a movement. People have often said that those of us with disabilities had to discover voice, I disagree, we have always had voice. It's just that others needed to discover their ears.

George Smitherman and his team discovered theirs.

And for that I am well pleased.

People are safer right now than they were only short minutes ago.

I'm still crying.

God's Gone Out for a ...

We were driving home on a beautiful, sunny, breezy and cool afternoon. Work had gone extremely well and I was feeling good in that 'worked hard' and 'achieved much' kind of way you do sometimes. Too, the windows were down and we had music playing, we were just a couple of dudes driving through the city. We came to a stop at a pedestrian crosswalk, a zebra crossing as the Brits would have it, and a young woman began a slow journey across the street.

She walked carefully, as if she'd fallen before and wasn't intending to repeat the experience, but she also walked with the clear purpose of crossing the street without holding traffic up any longer than necessary. About half way cross she was tiring and we saw her slow. I felt the breeze on my arm and I smiled at her, knowing she couldn't see me, but I wanted to add a smile to the mix. I love people with disabilities who still do what they want to do in the way that they do it. Like every act sometimes is both an act of politics and and act of poetry at the same time.

Now the guy in the very tall vehicle next to us, was fuming and getting more impatient with the moment. He reved his engine a couple of times to let everyone know of his growing anger. He must have been a vitally important person and he must have had a vitally important destination. A couple of times his truck seemed to almost buck as if the engine itself was tired of waiting for some careful and slow walking pedestrian.

I looked at his angry face and thought to myself, "I wonder why God gave up smoting? Perhaps for His health?'

When she reached the other side he squealed tires and shot across the intersection, I screamed because I saw her almost topple backwards into a horrible fall as the sudden sound took her by surprise. But she grabbed hold and stayed upright. Joe was stunned and took a few seconds to regroup and then pressed the petal.

We turned the corner onto Davenport and what to our wondering eyes did appear? A flashing light, a police officer, and the truck parked quietly off to the side of the road.

Sometimes the world rights itself.

Campaign Update: A Three Minute Protest

Note: for those late to the party ... the Smitherman has taken down the offensive post card. See update.

I don't want readers to keep coming back only to read what's going on with the word 'r&tard' coming out of candidate Ford's mouth and ending up in candidate's Smitherman's material. So I will update as I can. I did hear from the Smitherman people who assure me they do not endorse the word they are just educating people about Ford's character. They cannot and do not seem to be able to understand the concern about perpetuating the use of the word ... oh well.

So, I have another idea, go to the Ford on Ford site, click to send one of the post cards, click again on the offensive post card, which is called 'signs' and send it back to Smitherman at info@georgesmitherman.ca with the message: Please remove this from the website. As I see it the website encourages people to send the email, why not send it back to him. Almost done now go back and send one to Rob Ford at rob@robfordformayor.ca and ask him to apologize and .'take the pledge' not to use the word again. This takes less than 3 minutes to do! (You know how I know!) Let's get the message across in a different way as letters have not seemed to work. Just note here in the comment section that you've done it please.

Also, the winner of last year's Best Disability Blogger in Canada, has written a new post on the topic of leadership. Drop by and visit her. Thanks

Doubt and Reassurance

Sometimes, even with the affirmation of you out in blog land, I wonder if I'm over sensitive and tinge my opinions with self-righteousness. I don't want to be 'that guy'. I was thinking about my letters to politicians, my blog posts, my calls to others for help. I had just hung up from speaking with Special Olympics Ontario who were eager to participate in the campaign to demand public apology from one politician and a retraction of an electronic postcard with hateful language from another. I had a stunning moment of self doubt.

I remembered I wanted to pick up a book at the bookstore. I headed into the store and was steering carefully by a row of shoppers sitting and reading. One of them was a young man with a very pleasant face who was sitting looking like he was waiting for someone. I noticed something out of the corner of my eye. It took me a second to register. He was wearing a lime-green plastic bracelet, the kind that is used for both fundraising and awareness. A few feet later, it struck me ...

As Vita was gearing up the 'Words Hit' campaign we had some bracelets made up so that we could give them out at events like the Pride parade and eventually make them available on our website. The colour was suspiciously like the one the young man was wearing. It couldn't be ...

So I drove by a couple times, probably looking like a stalker so I pulled up to him and said, 'I notice you are wearing a bracelet,' before I could continue he began to speak. He told me that he'd got the bracelet at the Gay Pride march. I was thrilled that he could say that out loud, in public, without embarrassment or fear of reprisal, we've come a long way. He further told me that his younger sister has Down Syndrome and that he discovered that she was being brutally teased by other kids at school and that he wore it for her.

As we talked it was clear how much he loved his sister. He had been surprised, thinking everyone saw her as he did, that she was a victim of such verbal abuse. She was so concerned about her family that she never told them. He discovered it when he surprised her at school, waiting to pick her up. What he saw astonished him. They've had many discussions and he showed her the bracelet, she is thrilled he's wearing it.

Sometimes I doubt myself but then I remember ...

Words Hit
Like a Fist

The Insincere And Their Tricks

Note: the Smitherman campaign has removed the offensive postcard so hate will no longer be a click away. Ford, however, has not publicly apologized for what he said. It's now 10 to 3 in Smitherman's favour.

Trick Number One:

Have you ever had an argument with someone who said something hurtful and they ended up saying, 'I'm sorry if what I said offended you.' Doesn't that just piss you off? It's kind of like a passive way of accusing you of being oversensitive and then drawing attention to the fact that they are big enough to apologize for bruising your fragile feelings. I overheard someone once call me a 'fat pig' in another language, I knew the expression and when I called them on it they said, 'I'm sorry if that hurt you.' Um, and you expected it wouldn't? So you can be outrageously hurtful and then be surprised that something said to hurt actually did hurt. Hmmmmm. So that's an apology? A lovely trick. Apology without apology and no commitment to change. As it has been said, 'Change is the only apology that means anything.'

Here's what Rob Ford said in his letter to Joe (he's not apologized to me): If you were offended by my comments, I apologize.

Um, Rob, I'd rather you commit to change and pledge to refrain from hurting us further.

Trick Number Two:

The next big trick is to diminish the offense by pretending to be a maverick and passionate and accidentally stumbling into the politically incorrect. I love how you can diminish your act by changing verbal abuse, the use of what many people with disabilities consider hate speech and an act of bullying into something 'politically incorrect'. Don't shine my shoes with shit! Calling names is known by 4 years olds to be wrong. Four year olds don't come running into the house screaming, 'Robby was politically incorrect to me.' No, they say, 'Robby HURT MY FEELINGS.' Being a maverick, being outspoken, is not diminished by refusing to use racist, sexist, homophobic or disphobic language.

Here's what Rob Ford said to Joe: I have always been an outspoken Councillor while doing my best to stand up for the people of Toronto, and occasionally I have said things that weren't politically correct.

Um, Rob, people with disabilities are part of 'people' and yes, they live in Toronto.
Your statement in the letter that you have respect and empathy for people with disabilities is completely lost when you diminish our concerns.

Trick Number 3: Talking? Is someone talking?

As to the Smitherman camp. Not a single email. At least Ford had the gumption to answer Joe's and many of yours, to me he said, 'I read your blog, you do good work' or something such. As I didn't hear from Smitherman's office, I called them. I talked to two women one of which said that she understood my point.

Um, Smitherman, get your people to answer emails. Um, Smitherman people, if you understood my point you might be moved to action.

So here's the score ...

Ford, I'm awarding one point for answering his emails. I'm awarding another point for an attempt at apology. I'm awarding a final point for reading the blog.

Smitherman, I'd like to give a point to the nice woman I talked to but since I had to call to get someone to call me back - and even then they hadn't read the emails or the blog that outlined the issue, I can't in all fairness.

So for handling the issue thus far:

Ford: 3 points

Smitherman: 0 points

Vita Community Living Services has sent out an open letter to the candidates and to the media and I have spoken to some organizations who will be weighing in on this and joining our protest. Again, we want apology and promise from Ford, we want the postcard removed and an apology from Smitherman.

Blog readers, it's not to late to join in. Write a letter, write a blog, if you work for a service organization get them to write something ... the addresses are in yesterday's blog.

Outrage Out Loud

Note: I see from my stats that this post is being hit a lot due to Facebookers. Thanks for whomever is promoting my work. Just a note, however, that the postcard on the Smitherman FordonFord site has been removed. They have acted. Ford, however, still has not apologized publicly for his use of the word. Read on to see what the fuss has been about.

Warning: This post will be using a quote that includes the 'r' word. It is done only for the purposes of information and without the intent of promulgating the use of the word.

Toronto is less safe for people with intellectual disabilities now that people with disabilities are being defamed as part of the mayoralty campaign. I was innocently watching the news when a poster filled the screen. The poster had a picture of candidate Rob Ford beside a word bubble which said: You’d have to be retarded if you can’t see frickin’ water in front of you. I was brought up short. My heart started to pound and my teeth clenched. The 'R' word has a profound and negative impact on me emotionally.

I've always hated that word, or rather, the use of that word in hateful ways for the purpose of devaluing others. It's a word that is an attack on who people with intellectual disabilities are as individuals and an attack on the minority constituency to which they belong. It's a word that is outrageously harmful and it is used, no matter what people say, with full knowledge and intent. That the word hurts others has also been clearly stated by people with intellectual disabilities themselves, by their families and by the organizations that provide them support. This is not news.

At Vita Community Living Services, we were issued a challenge by our self advocate group. We were asked what we were going to do to make the community safer, to make the community a place where they could go without fear of hearing the 'r' word tossed about. We responded by creating a campaign wherein we distributed the words hit cards to all our members and all our staff, eventually we distributed them to self advocate groups and organizations around the world. We wanted to actively engage those who used the word. Further we developed a version of the card for Gay Pride where we marched for the first time. Our goal was both to confront those who use the word as well as to begin to build unity with other groups who have experienced negative taunts out of the mouths of bigots.

Then comes the campaign for the mayor's seat and because we live in modern times the discussion and debate has become nasty. The George Smitherman camp has decided to use words out of the mouth of candidate Rob Ford to bring him down. As such they created a website with electronic postcards that contain various quotes from the public record said by Rob Ford on various issues. One of the quotes uses the word 'retarded' in reference to signage. This campaign was everywhere. I saw it in the newspapers, I saw it on television, I easily found it on the web. I actually sent the electronic postcard to Manuela, Vita's Executive Director, both so she could see it as well as to find out how easy it is to simply forward this kind of hateful stuff onwards - it's easy.

I was angered.

At Rob Ford for using the word in this manner.

At George Smitherman for choosing this quote to highlight and as a result making the 'r' word so visible, so public, so accessible.

I was angered.

By the media for not bringing a disability perspective to the story. I can't imagine the media, had another word been used to disparage another minority, not interviewing or speaking to spokespeople wounded or damaged by that word.

I think Ford and Smitherman and even the Toronto media believe that we are a passive minority that might be offended but that will be silent. I think that all of us who have justifiable outrage at Ford's use of the word and Smitherman's promulgation of the word will simply shake our heads and go quietly away.

No more silence.

I immediately wrote both Ford and Smitherman. I demanded that Ford apologize for his use of the word and that he 'take the pledge' not to use the word again in that manner. I demanded that Smitherman take that electronic postcard off the site, apologize for choosing that quote and 'take the pledge'. I, of course, have heard nothing back from either side.

Here's where you come into the picture. I have a large daily readership. Many of you are faithful commenters. I would like you to take just five minutes from your day and contact both Ford and Smitherman and if you have time also a note to City Television which has a popular news programme here in Toronto. I'd also ask that you leave a comment here in the comment section to let me know that you've done this. It's a lot to ask. But we have to start using the muscle of our numbers and the motivation of our anger to make our voices heard. Don't worry if you are from outside of Toronto or outside of Canada, the international movement against the 'r word' needs to been seen, felt and most importantly heard. I have this wonderful image of those of you who live in parts of the world that are reading this just after publishing at midnight here in Toronto immediately writing letters, I imagine the Ford and Smitherman people openning their emails in the morning to discover international outrage. I imagine and I hope.

For those of you who have a personal blog, disability themed or not, who are looking for something to blog about, please join in and maybe we can blogswarm this topic. It's inappropriate for public figures to speak disparagingly of any member of the disability community. If you do blog about this, put the link in the comments so we can all visit and get a sense of the length and breadth of our community.

Here's how you get in touch:

Rob Ford who used the word:

Campaign Address
245 Dixon Road
Toronto, Ontario
M9P 3T4

Phone: 416.628.8576

E-mail: rob@robfordformayor.ca


The George Smitherman Campaign who is distributing the quote containing the word:

70 The Esplanade, Suite 201
Toronto, ON
M5E 1R2

T. 416.342.9674

E. info@georgesmitherman.ca

To a media outlet in Toronto:

news.to@citynews.ca

The world needs to be made safe for all - and we are finally realizing that we are part of 'all'.

Thanks 'y'all' for reading, for writing, for protesting, for expressing outrage.

Outrage OutLoud!

In Preparation

Today is the last day of my vacation and I'm going to take it off. Instead of a post today I am going to refer you to a blog written by my friend Susan who writes every Friday for the faith blog Whatever He Says. She writes about her gentle confrontation with a member of her family regarding the 'r' word. The only correction I would make to her post is that she states the 'words hit' campaign was intitiated by me. I'd love to take that credit but the campaign was actually started as a result of a request for community safety from a Vita member and then was designed in consultation with Manuela Dalla Nora, Vita's executive director and Vince Papa of Ancaster Pope Communications, along with various self advocates and staff.

I will ask you to read that blog in preparation for my blog tomorrow. I was going to write it today but I'm too angry and need to settle down a bit before writing it. I'll do so much later today after a period of time for reflection. Then, tomorrow, I'm going to ask you, maybe even beg you, for help. Action is sometimes needed. I believe it is needed now. But ... wait ... that's for tomorrow. For now, drop by and visit Susan ...

Ruby's Little Fingers

The breakfast area was full. Joe and I, in an effort to be flexible - which can be dangerous at our age, changed our usual routine to have a much later repast. Mike and family eat later when on vacation than our usual 6:30AM meal. But, what's the point of spending time together if you aren't spending time together? Yesterday was the last day for the others though Joe and I would be staying on. Most of the people who were here during the week had left and there were all new eyes in the breakfast area.

We managed to grab a table that was right by the toaster and almost in the passageway between two seating areas. Just as we took our seat all the others arrived. Ruby looked just up and was rubbing her eyes as she took her seat. She is too young to notice others notice us and for this I am thankful. She is used to me, my size and my disability. More than that she thinks wheelchairs are way, way cool.

We chatted as we had breakfast. I made Ruby my famous 'peanut butter roll up.' It's a slice of bread slathered over with peanut butter and then topped with 'red' jam, once the jam is on, simply roll up. Jam falls out of both ends so you have to constantly lick jam off the ends and your hands and your arms and wipe it off the floor. Ruby thinks it's fun food.

When done Ruby was getting fidgety and wanted to wander outside where it was warmer. I agreed that it was pretty cold in the air conditioning and Joe and I prepared to go outside with her and allow her parents and Sadie to finish their breakfast without 'nearly four year old' discussions. I pulled away from the table and Ruby noticed that I'd taken the legs off the chair when I pulled into breakfast.

'I'll get the legs,' she said loudly. Loud enough to re-engage the stares of strangers. I quietly smiled as I watched them watch her get first one leg and then the other, stopping to put each leg onto the chair with quick expert movements. She'd learned to do that on this vacation and loved the responsibility and the feeling of helping. Let's be clear, it isn't easy to put these things on. There are two holes which each need to be lined up with the 'thingy' that they go over. Then the leg needs to be swung and locked into place. Finally the footplate is pushed down and into place.

Ruby with ease does each of them in only seconds. The legs are heavy so she needs to hold them with two hands and then place the holes over the aforementioned thingy. Her little tongue sticks out as she concentrates. The eyes watched her move around the chair getting it ready for me. They watched her comfortable with the chair, with me, with the process of making me mobile. They watched someone who has the ability to help for the sheer joy of helping, someone who sees helping as something that enhances her without diminishing my value. To her I am not 'other', I'm just 'another'.

Someone unused to the concept of bigotry.

The Witty Drunk

Forgive me for being judgemental but I think you've got a problem when you are drunk enough to be a little out of control at 1:00 in the afternoon in the Walmart parking lot heading for your car. I have always, for my whole entire life, been the focus of those who imbibe a wee too much. Those people whom alcohol makes witty, full of rejoinders like 'hey, hey, big guy!' - what a knee slapper that! I was pushing myself out of the store while Ruby and Joe were paying for their stuff. I like pushing myself as far as I can and am developing a fair bit of strength in my shoulders and arms. It feels good.

When I got through the door there was a slight slope down to the car. We had parked directly opposite the door so I could go straight down. I give a big push over the lip at the bottom of the curb cut and then sailed on towards the car. It was fairly wide so I sat back and enjoyed the ride. Mr. 'too funny by half' Drunk stopped to watch me. I had noticed him in the store breathing alcohol fumes over people and being generally annoying, but in a wonderfully funny manner of course - he cracked himself up. Now he was standing, with a bit of a weave like a punching bag just before coming to rest, watching me.

'Hey big buddy!' he calls out.

I pretend not to hear him, many people think I can't hear them anyways so why not perpetuate that myth?

'Big buddy! Big Buddy!!!' he's calling.

I turn and smile.

'Can I use your wheelchair when you're in the car? I'd like to ride it down the hill, it looks fun.'

Shit. It's going to be a confrontation.

'No, I don't let other people use my chair.'

Drunks can turn fast, 'Awwwww coooooommmmmmmmeeee onnnnn.' Even Ruby doesn't whine like that. 'Man, I just want to borrow it for a minute.'

'No, sorry, I don't lend my chair.'

His face twisted, 'I want your freaking chair, I said.' (He didn't say 'freaking' but I figure the story isn't reduced by changing his words a bit.)

'And I said no,' by now I was at the car.

'Freaking taxpayers bought you that chair and I'm a freaking taxpayer. Give me the freaking chair,' he's loud now and others are noticing, most are afraid of helping, I guess drunks scare more than me. But now I was mad.

'My grandchild is coming out of that store in a few minutes, if she hears you talking like that to me I will rise out of this chair and I will make sure that you never bother anyone again, do you understand me?'

He stopped, stunned at the force of my anger. I saw his fist clench a couple of times then he said, 'OK, buddy, OK, just wanted to have some fun.'

He shuffled away just seconds before Joe and Ruby exited the store. She waved happily at me and called out 'Hi Davey!!'

When she got to the car I asked her for a hug, she reached up and I picked her up, and whispered into her ear, 'Thanks for giving me courage today.' I don't know what she thought but she squeezed harder.

Maybe Too Accessible

Our room in Gravenhurst is in a hotel that takes accessibility fairly seriously. We stay in a lot of hotels and this one meets my needs in ways that few others do. It has a room that isn't just accessible, it enables me. I look forward to staying here whenever we do, for business or for vacations. Our room in a one bedroom suite and we stay here often enough that we even know what room number we prefer and request it on booking. It's a great place, with great staff and maximum accessibility. Saying this worries me a little because someone with a disability different from mine may find it lacking, but for me, it's simply wonderful.

Mostly.

We'd had dinner and Ruby wanted to play 'Pop up Pirate' and she really wanted Joe to play. Joe was about to do the dishes (even though there is a dishwasher) but Ruby was being persuasive. She likes Joe playing because he finds the game very stressful and has a huge startle effect when 'that damn pirate' jumps out of the barrel. Ruby finds this very funny. In truth, so do I. So I was encouraging him to join the game and he was giving me that 'please no' look. I pretended not to see it.

Now at home our kitchen is small, my wheelchair can get in to the counter where I help prepare meals, but dishes are just not possible. It's become a job that only Joe does because only Joe can do them. But here the dishes are a task that is accessible to me. I noticed this without noticing the implication. You see Joe and I just fell into the old routine. I helped prepare the meal, Joe does the dishes. But, without thinking, I said, 'You play 'Pirate' and I'll do the dishes.'

You could see the realization hit Joe's eyes too. Ah, ha, dishes is now a chore to be shared, at least for this week, at least in this place. As I rolled over to the sink, I was thinking 'Damn, damn, damn, damn!' I heard Joe behind me saying, 'Thank you Ruby, maybe we'll play 'Pirates' every day this time.' She, delightedly, yelled, 'Yeaaaaaaa!'

I muttered something much different under my breath.