Wednesday, March 21, 2018

it hurts because

A long time ago, when I first became disabled, a little boy stopped, looked at me, and asked, "Does it hurt?" I knew the question was about my disability and my use of a wheelchair and I was touched by the softness in his voice, he was young enough, still, to care for everyone's well being. I told him that no it didn't hurt and that the wheelchair could even be fun. He smiled. He was glad.

But now, years later, I'm going to tell the truth about disability, "Yes, it hurts."

I am lucky because, for me, my physical disability isn't accompanied much by pain any more. That has reduced significantly over time. So when I say that it hurts, and it really does, I mean a different deeper kind of hurt.

The kind of hurt when you find out at the last minute that the room you booked for that night isn't wheelchair accessible as you were guaranteed. The painful panic that accompanies the next 10 phone calls to be told over and over again that there's no room in any inn. And when you end up having to stay 40 kilometers away from everyone else, in a small town that has a hotel with a room.

The kind of hurt you feel when you've planned to go to an event and have been guaranteed that the place is accessible so you plan to go with a bunch of friends. Only to find out that accessible means a step and a narrow entrance and suddenly you are the problem and everyone's concerned about your feelings and you are tired of having people feel for you and want it all to stop.

The kind of hurt you feel when you find out that people simply don't ask you to join them simply because they don't want to have to worry about accessibility and it's just easier. When you find out they've talked themselves into believing that you don't really want to belong anyways.

Disability hurts.

I lied to that little boy.

I hadn't meant to.

But yesterday I bashed myself around for even being disabled. I didn't want to have to go through the frustration and the energy and the whole whack of shit that comes with needing what people don't care to give, with dealing with sham guarantees, with dealing with the sudden panic of being suddenly a problem again.

I have to keep solving the same problem over and over again.

It hurts because it shouldn't.

It hurts because it shouldn't.

It hurts because it shouldn't.

Monday, March 19, 2018


On Sunday Joe and I, along with Marissa and the girls, went to see 'Love, Simon." For those of you that don't know, this is a movie about a teenage boy who is dealing with coming out as gay. The movie has the critics strongly on its side and the gay community holding its breath waiting to see if anyone will go. As elders in the LGBTQ+ community, Joe and I went in a little unprepared for our emotional reaction to the film. That it exists. That it tells a story that we can relate to. That it's a love story. Those things, which we knew going in, well, the experience was more powerful than the anticipation. Something that is almost never true.

But I wanted to write about the fact that there were a lot of teens in the theatre. Both young men and young women. We heard them chatting, too loudly. We heard them eating, too loudly. We heard them switching seats, too loudly. They took up much more space than the seats would have predicted. But they were there and we were glad of it. Glad that they chose to come to this movie, and glad of the support that their presence would mean to the box office. If we want more of these, we need money in the registers, we know that.

Throughout the movie Joe and I just didn't look at each other. We didn't decide this going in but we both knew that it was the best approach. We didn't want the kids to see us laying on the floor crying. So we held it together and just cried and cried and cried. I can't explain to you why if you don't already know. The movie was bright and funny and moving. But wow.

The thing was, at the end, at one of the pivotal points of the movie, the teens who had been silenced by the story they were seeing, starting applauding and cheering. Out of the blue, and their cheers were authentic, they, like us, were unused to seeing what we just saw. And they cheered.

Throughout the last few minutes there was more cheering and hooting and applauding, these kids were into it. When it was over, there was a final burst of applause and then the noise started as they talked about the film and how brilliant it had been.

We loved the movie.

But we loved it even more that teens could go and see a movie about a fellow gay teen and react with love and hope rather than with jeers and revulsion.

Because that has been our journey. And "Love, Simon" is another stop along the way.

Saturday, March 17, 2018

The Powerful Act of Just Living

We arrived at the hotel yesterday after a long ride and were looking forward to getting out of the car and into our room. The lineup to check in was simple and we had our keys in moments. We'd asked for help with our luggage and the porter followed us along towards the elevators. The elevator is at the top of a mucky big ramp and I asked him to go along with Joe and I'd follow behind. He said that he would hurry back to help me up the ramp.

Um, no. I grabbed the handrails on either side and was at the top of the ramp before he had a chance to park the luggage cart. Then he suggested that I go up with Joe and he'd follow. We've had our luggage disappear on us once in a hotel years ago and we never leave it unattended. I asked him to go with Joe and I would follow. He agreed but he had this shocked look on his face.

When the next elevator came I was on it and up to our floor and pushing towards our room. When I got there the door was propped open and he was unloading the last piece of luggage. He turned and saw me and almost jumped out of his skin. "You're here," he said, shocked.

I waited for him to get the cart our of the room so I could enter and we wished him a good night. Joe told me that he was stunned at my ability to get around and to be 'out there alone.' Joe said that I don't really need a lot of help.

He made noises about learning something every day.

And you know what, I hope he did.

Thursday, March 15, 2018

The Rescue

I could feel it in my hands, even though it wasn't there. I was sitting in my wheelchair, alone and overwhelmed. I felt my inadequacies keenly. It's in moments like these that I come closest to despair. It's in moments like these that I question who I am, who I'm supposed to be, and feel that the world has been cheated by getting this Dave and not that Dave.

I was immobilized. Not by my disability. Not by the wheelchair. But by the weakness of that comes when the darkness within cast shade on any possible light. I knew I had to do something.

This is not the first time that I've experienced this.

I've had messages for most of my life about my worth as a human being.

Not good enough.

Not smart enough.

Too fat.

Too ugly.

Too stupid.

I hear the words attached to those messages. I no longer wonder if those who used them realize that I, by the nature of my construction, would have to bear their weight my whole life long. I think not of them, but of me. And what I am.

It's in moments like these that I forget that I have it. Hidden away. Far away and deep inside, I have kept it safe.

It's a photograph, not the kind taken by cameras but the kind taken when a moment in time intersects with magic and flashed by joy. I have a few of these. But there is one. It's far to personal to describe, but it's there. I look at it sparingly because the light from it hurts me. Like when a bandage closes a wound, it hurts.

I felt it in my hands, this picture.

And I looked at it.

From the photograph slowly came strength. Slowly came a new language into my mind. Language that suggested that I do have strength, that my own voice is as powerful as the ones that ripped me down, that I can go and I can do.

And that.

Of course.

Doing Damns The Darkness.

Wednesday, March 14, 2018


It was a demonstration of drumming and the kids, at least 70 of them, were totally into it. The instructors were having fun and were clearly well trained in both drumming and how to control a mob of kids. They taught them a rhythm for stop and another for start. The kids loved understanding the message of the drum, probably tired of voices and instructions and things that felt like school. Ruby and Sadie had a drum and a rhythmic noisemaker which they shared between the two of them.

There were enough for every kid to have something but the drums were the most popular. When they were distributed a young girl with Down Syndrome's mother helped her carry the drum to a space on the floor. Mom had just got her situated on the drum and returned to sit in a chair when two kids, also girls, who had noisemakers saw her as an easy victim. They headed towards her with the obvious purpose of pushing her off the drum and taking it from her.

When they got there they told her to get of the drum and give it to them. Mother is now alert but she didn't get up, she just watched intently. The little girl with the drum looked at the two towering over her and said, clearly, loudly and firmly. "No, it's mine."

One of the kids reached to take the drum and the girl with Down Syndrome stood up, the drum held in place with her feet. She said, "I said NO!" Several people turned now and saw the confrontation. Mother had risen about half an inch off her chair ready to dash, but she didn't move.

The standoff was only a microsecond long but it felt longer. The girls who had come over to this 'easy victim' backed down. One even said, "Sorry."

And it was over.

That little girl.

That mother.

That family.

They all understand the importance of the word 'no' and 'mine'. People with disabilities have a right to both those words. NO! MINE! All kids have a right to those words. Parents need to teach and then after teaching, trust their child to fight their own battles and only intervene when necessary.

Mom's teaching had been needed.

In the moment, she had not been needed.

I salute parents who do the job of getting kids strong enough to use the voice they have and to stand alone and strong when they need to.

When it was all over the little girl with Down Syndrome got to beat the drum she was given, the drum she didn't let be taken away.

It's not a minor victory.

Tuesday, March 13, 2018

Daddy Daddy

Joe was in a long line up. I would have been with him but the area was cramped and I didn't feel like having people towering above me. One of the shocks of becoming a wheelchair user is that my 6'1" frame is always folded down into a seated position so I went from being TALL to being not tall. Joe jokes, sometimes without much humour, that he never used to have difficulty finding me in a store but, now with my disability, he really has to search for me. So, didn't want to be there, and because I didn't have to be, I wasn't.

After only a few seconds of waiting, I indicated to Joe that I was going to go for a run. He nodded. I turned the chair and looked at the long stretch of the mall in front of me. There were few shoppers about, and I gave the wheels a shove and went on a joyride in my chair. I love it when I've got the space and the time to just fly in the chair. I'm no paralympian by any stretch of the imagination, but I'm not slow either I can create breeze.

When I reached the end my muscles knew that they had worked. My chair is old and clunky and now has a very poor roll. My push isn't aided by the chair any more but that doesn't mean that the engine isn't able to make up for it. It took a second to get my breath and then I flew back. I was going so fast that I couldn't hear the words of those I passed by. People startled by a wheelchair passing them are sometimes unkind, the world turned upside down for a moment.

Joe was nearer the front of the line when I got back, panting, at the start point. It felt good. It felt good to have a run, it felt good to just enjoy the chair and the pushing and the work it took.

People misunderstand wheelchairs.

They misunderstand life in a wheelchair.

But not kids. The one comment that I heard as I passed a father and his little boy was, "Daddy, Daddy, I want one of those." his finger pointed solidly at my chair.

Monday, March 12, 2018


We had taken our seats in the movie theatre and were enjoying the trailers. People were still pouring in and choosing seats whispering louder than a normal speaking voice. I love the movies, I love being in a room full of people there for the same experience. I was relaxed into my wheelchair and just enjoying the feel of being there.

Most people chose to come in, turn immediately to their left and go up the stairs to choose their seats. But two women entered, the one in the lead chose to cross in front of us and go up the far staircase. When she passed in front of us I recognized that she had an intellectual disability and was being accompanied by her staff. Just past us she stopped and looked up at the seats.

You can tell the quality of service that an individual gets almost instantly. The first words that come out of a staff's mouth, the tone, the texture, the content and the feel of those words will tell you everything. The staff leaned into her and said, "Where do you want to sit?" The woman considered for a moment and then pointed at seats that would have been about midway up the theatre. She lead and the staff followed.

That was it.

That was the whole interaction.

Those were the only words spoken.

But I know a lot. I noticed that the woman had a choice and she showed no fear or hesitation in making that choice. She didn't look back at her staff for affirmation that she'd made the right choice.

There is no choice where there is fear.

I noticed that the woman led the two into the theatre, she was not guided to a 'right way' of finding a seat. She didn't follow the crowd and was not expected to nor was she urged to make the same choice.

There is no choice where there is expectation of conformity.

I noticed that the woman's sense of leadership, the sense that she was at the helm of her own ship, was not once compromised. The staff was comfortable with supporting without leading. supporting without questioning, supporting without lessening. She was not diminished by the fact that she needed support. She is vulnerable to the ability of staff to know how to assist rather than insist and that vulnerability was not preyed upon.

When you support someone, you are always being watched.






Sunday, March 11, 2018

A Little Bit of Poo

I was rolling over to one of the exercise machines at my gym when I noticed a young woman, new to the gym I think, struggling to use the cable machine. She was having difficulty figuring how to move the 'do-hickies' up and down. I don't know what they are called. She glanced around and saw me and asked if I knew how to move them. I said that I did and I told her that she had to swing them either towards her or away from her to release the grip and move it. She still couldn't do it.

I pushed myself towards her to show her when from far far away a man comes running towards her to help her. I was almost there and he was still coming. He saw me about to show how it works and he began talking, over me, to explain the was to move the thing. I turned to him and said, 'I was asked, I know how it works.' I didn't say it with anger but I did say it with firmness.' He stopped in his tracks like he'd been struck. He deflated and went back to far far away.

Within seconds I had shown her how to do it. She got it right away. She said thanks, I said, 'Thanks for presuming I might know.' She thought for a minute and said, 'I get it. I really get it.' I went back to what I was doing she went back to what she was doing and my workout simply continued.

I was, indeed, shocked that she asked me. No one ever asks me for help. All sorts of people offer me help, but until this happened yesterday, no one has ever asked for help. I think that's mostly because people seldom ask anyone for help there. Most know what they are doing and the staff are great for demonstrating how the machines work. But help is asked for, occasionally, but never from me. I was grateful to be seen as competent.

I was also shocked that the fellow ran from far far away trying to get there before me and give assistance that he wasn't asked to give. I was not surprised to be talked over, this happens a lot to me as a disabled person. But his intrusion really pissed me off, not because I wanted to show of my knowledge, not because I was a man and she was a woman and I wanted to strut what I know around, but because he invisiblized me. I was clearly there and clearly not at the same time. Again this happens to me as a disabled person a lot, as the song puts it 'so visible easy to miss.'

Non-disabled people so often, so freaking often, make themselves part of the story of my day, the story of my life, without any thought of the damage they do to the story I have to tell at the end of the day. The constancy of being overlooked, under heard, and completely removed from consideration wears down the spirit a bit.

This would have been a nice story. About the presumption of competence and how good that feels, but instead it's about him. I can't rip him out of the story because he's there like a tiny bit of poo that transferred itself from dog to sidewalk to the wheel of my chair.

A little bit of poo.

Saturday, March 10, 2018

Box Forts and Unthinkable Exclusion

I don't know who he is but some YouTube guy has taken over the imaginations of both Ruby and Sadie. We saw one of his videos and he makes box forts, that's it box forts. It's been a couple weeks now that we've been invaded with cardboard, tape and razor sharp focus.

We live in an accessible townhouse with a full basement. The basement is not accessible, it's down a flight of stairs that might be considered a good place to practice for Everest. I've never been down there of course and am happy with the idea that I will never be. But all this vacant space is great for the building of a giant box fort prison.

From the moment they started Ruby and Sadie, when they come upstairs, come up with pictures of the construction of 'basement Alcatraz' so that I can see the work progress. It's becoming kind of monster sized. I get to sit upstairs and listen to them laughing and talking excitedly as they come up with ways to make tunnels and secret passageways and 'the story.'

'The story' varies from time to time but the subject is about how Ruby and Sadie, from their separate cells will manage to escape from their prison. The have to deal with the cameras and the alarm systems and the guards. Marissa and Joe are the bad guards. I, I am informed, am their 'outside guy.' Their plan, for the day that the break occurs, after the construction is done and the action begins, is that they will face time me on the phone and I will help them with ideas for breaking out and keep an eye out for the dastardly guards.

Some will see the story that I told as an example of inclusion.

I don't.

I see it as a story that demonstrates what happens when exclusion is unthinkable.

There is a difference.

No one told the girls to include me.

No one suggested that they make sure that I'm part of it.

In their minds, from the start, I'm on the team and I'm part of the project. I think they would be offended if someone suggested that they 'did a good job of including me'. They do it because they can't imagine not doing it.

In our fight for a better world for people with disabilities and difference, we need to fight on two fronts. The world that we live in now, as it is presently socially constructed needs to be challenged to become inclusive, to intentionally make inclusion happen. It's hard work. It's good work. But we also have to be focused on raising kids, both as a responsibility of families but also of schools, such that exclusion isn't ever an acceptable option. Not through lectures, but through active demonstration, every day, that all kids matter, that all kids deserve kindness.

Ruby and Sadie have been raised around all sorts of difference, but they've also been part of the discussions we've all had about accessibility for me and the planning it takes for us all to do what we all want to do. They've only ever heard the message that we're all in.

Fight for Inclusion.

Create Aversion of Exclusion.

That's the path to the future. I'm sure of it.

Thursday, March 08, 2018

A Woman, A Rebellion and a Glass of Milk

When I was growing up, I lived in a small town in the Rockies. The house next door was rented for awhile by a couple, one of whom had a disability. She was able to walk but when she did she had a very exaggerated gait. I remember her mostly because her personality was vibrant and her engagement with me was warm. I liked her.

I remember her husband as kind of a thin, bland, man. I have virtually no memories of him at all. I do remember that the two of them had applied to adopt a child but that the adoption was denied because the adoption workers didn't like how she walked. They were convinced that she would drop a baby if she were to have one in her arms. She would not have.

They were the focus of much talk. Well, mostly he was. It was all about what a wonderful man he was for marrying her. Disabled, unable to bear children, she was not considered a catch. There was little talk about how a bland man who left no impression was lucky to find a woman who's light at least gave him a shadow.

Then they moved away. I knew my parents were still in contact with them but I no longer saw her. I missed her.


My parents who would have normally kept this stuff away from us, were so shocked because she had left her husband and 'shacked up' with another fellow. Wagging tongues brought on a tsunami of condemnation. How could she have done that? How could she have left a man who gave up everything for her? (What he gave up was never specified but I assume it was a non-disabled, fertile, bride.)

I never saw her again, but I heard her. I came home from school and when I came in the kitchen door, I heard her speaking to my mother in the front room. I heard my mother asking her why she would leave such a good husband, why she would throw it all away.

Her voice grew strong, "Because one day I realized that I don't have to expect less, I don't have to be satisfied with getting less, I don't have to be less just because I am a disabled woman. I don't want a man who loves me and pities me at the same time. I want more. I'm taking more."

I admit to being a bit shocked. I had never heard a woman speak like this before. I had never been challenged about what it was to be a woman, to be a disabled woman, and to simply want more than what was on offer. I've thought about her and her words often over the years. As I grew into a gay man, I realized what it was to be offered less, as I lived with a man who was so much more handsome and fit than I, I knew what it was to have others wonder why he would choose me, as I grew into a disabled fat gay man, I know what it means to simply 'taking more.'

And on International Women's Day, I thank her for the words she said to a young boy, with a glass of milk in his hands, standing in the kitchen, listening. I thank her for the seeds of rebellion that she planted in my heart. I owe her.

Wednesday, March 07, 2018



There is a lot of talk and some fiery headlines about the 'proms' for people with intellectual disabilities. I've read a number of them and they all say pretty much the same thing and make the same points. All suggest that these events should celebrate all teenagers and that people with intellectual disabilities should be dancing next to typical peers in an integrated event rather than by others with disabilities in a segregated event.

My first response to reading that particular argument is a burning sense of outrage. The suggestion is that people with disabilities are more valued when they are near or with those without disabilities than they are when they are near or with the non-disabled. I shudder at that thought. The idea that the non-disabled just walk in to a room of disabled people and suddenly those there are transported to a place of value and worth appalls me.

The other thing I notice in reading articles like these is that they never, ever, interview people with disabilities who were at the events. No, they interview other disability experts, including people with other kinds of disability, who pronounce condemnation on segregated events but don't pronounce condemnation on the lack of the voices of those who have experienced them as part of the debate.

My second response is, I do! I want and need events or social opportunities with other people with disabilities exclusively. I don't have that, I never have that, but I want that. I get really lonely as, typically, the only one in the room. I would love an opportunity to share experiences and tell stories and relax into my body without fear of attack.

Occasionally I run into another wheelchair user who is willing to chat about the disabled experience and I'm in heaven. It's so nice to be able to say things out loud knowing that you will be understood and validated rather than corrected and have your experience explained away. It takes the aloneness and isolation away.

Who is it to say what disabled people want except disabled people?

Do I like the idea of the 'proms' ... no, I don't.

Do I like events where pity is woven through the fabric of their creation ... no I don't.

But that's not what I'm writing about now. I want to express the danger in determining that all disabled people want to be constantly in the company of the valued. I fear that the teaching that - others with disabilities, less worthy - others without disabilities desired friends - leads to both self hatred and complete isolation.

Every community seeks solace in places created by and for themselves. Gay bars, women's clubs being obvious examples. Do they need to exist? Do people need to self segregate. I'm guessing, maybe, yes.

How that is done may be a question.

That it needs to be done is not.

Tuesday, March 06, 2018

Annie's Story

Today I'm giving the mike to Annie, a young woman I met when I was a classroom aide in a high school in Toronto. We became friends and then, over time, lost touch. Here's her story of memory and reconnection:

I often hear people dissing Facebook. “Good Lord no! I’m not on Facebook! It’s trash! I don’t want to know what you (or anyone) ate for breakfast!” (Confession: I think I’ve twice posted my breakfast menu on fb – my first morning in my new apartment, post divorce; and the decadence of having [and being treated to] a “real” chocolate ├ęclair on my birthday of 2017.) Yes, I am the sole culprit for trivializing Facebook! Shame on me!

But seriously and on a more positive note, I want to tell a truly amazing and incredible Facebook story. Actually, this story gave birth to the name of this particular blog.

Yes, I am an avid Facebook user. I admit it. I like its Messenger (chat) to easily and quickly contact friends. I feel connected when I see friends post special milestones. I like being reminded of someone’s birthday. (This single feature alone has saved my butt more than once.) To relax, I enjoy playing “Words With Friends” and I’ve actually made good friends while playing WWF, whom I now regularly chat with on Messenger.

So, here’s the awesome story that I promised you….

Back in November of 2017, (November 12 exactly) as I scrolled through the Summer Institute on Theology and Disability fb page (an organization that I’ve been involved with and am a great fan of) a poster’s name caught my attention. I consider the last name somewhat distinctive and many, many, years ago I had a good friend with the same name as this poster.

I smiled with the thought “Could it be….. No! It can’t be!….. But….. What are the odds?..... And even if it is, would he/they remember me?” Life had gone on for all of us. I had since legally changed my first name; gotten married; moved several times; lived in two additional provinces; and divorced. So what were the odds?

I reviewed his page enough to be pretty confident that it was indeed him, but would he remember me? And even if he did remember me, would he even want to hear from me, or would I be an unwelcome intrusion from a distant past?

I thought carefully, but this guy and his partner were two of my best friends when I was in my teens. I had several “firsts” with them: my first gay bar (I was under age – haha); my first time seeing The Rocky Horror Picture Show, Harold and Maude (which is still one of my all time favourite movies. I l-o-v-e Cat Steven’s music!) and I’ve long forgotten the name of the third movie in the triple feature – something to do with an all boys school – with much nudity; my first ride on an inaccessible subway, with a broken-down escalator; and countless other ‘firsts.”

I also very much remember New Year’s Eve 1978 (going into ’79). Dave and Joe and Joan had invited me for dinner and to stay over, since I was now living in Burlington, which Dave had taken a liking to nicknaming “Spot” because of Burlington’s population when compared to

Toronto. We spent many weekends together back then and I always slept downstairs at Joan’s apartment. As Joan was also a good friend, she gladly volunteered to help me in an attendant capacity. We all did things together, shared many conversations, had fun, laughed a lot – we were tight.

After supper that New Year’s Eve, Dave asked me to come sit with him in the living room and said that he needed to talk to me; that there was something important he had to tell me. When he sat on the couch, I moved my wheelchair close to him.

I no longer remember Dave’s exact words, but the next several minutes went something like this:

“Annie….. there’s something I have to tell you.” He seemed nervous and serious.

“ok. What?” I asked.

Dave seemed to hum and aww a bit, which seemed unlike Dave.

“You know that you are one of our closest friends, right?’

“Well yehh! And so are you guys to me.”

“Well Annie….. I hope that will always be true. I hope you’ll always consider us friends.”

“what????? Why wouldn’t I??? What…..??? What’s going on? What’s wrong?”

Dave was now literally shaking and trembling.

As my mind and heart started racing, it finally dawned on me that neither Joe, nor Joan were siting with us. They were in the kitchen. I was suddenly aware of pots and dishes clanging, things occasionally being dropped, the odd “damn!” and maybe one or two “Ohh come on will ya…..!”

I became fearful….. imagining the worst. “Ohhh, my God, Dave! You’re not sick, are you?’

Dave may have smirked slightly. “No. No…. Although some would…..”

I interrupted. “Joe?..... Joe’s sick?..... Joan?..... Ohhh my God no!...... Is it Cancer?..... What kind of
Cancer?..... Is it treatable?..... No…….. Wait!!! Ohhh my God!!!!! You guys are moving away!!!...... You’re moving back to BC and I’ll never see you guys again!..... Is Joan going too???”

“Annie….. Annie….. Slow down! No we’re not moving. And no one has Cancer.”

“Well what?????” I asked. “What’s wrong??? What is it?????’

Dave was now shaking and trembling sooooo badly. He was sweating and barely able to get his words out.

“Annie………. Annie………. I….. I mean, we’re….. I…. We’re…… Joe and I…..”


“We’re….. We’re….. WE’RE GAY!!!!!..... OK!!!!! We’re gay.”


“Look! Maybe you hate us now! Maybe you’ll never speak to us again! Maybe…..”

I looked right at Dave’s face. “Wait, are you not still Dave?”


“The guy I knew 20 minutes ago? That same Dave?”


“Are you still my friend?”

“Yeh….. Of course!.... I hope I am anyway……?”

“Well….. What’s the problem?”

Just at the second Joe came flying around the corner from the kitchen. “I can’t stand this anymore! What did she say?..... WHAT DID SHE SAY?????”

Dave looked up at Joe and simply said. “Yeh…. So? She said, Yeh…”

Whenever I recall that evening, which over four decades I have many times, I always only have one dominant thought: “No one….. but NO ONE should EVER be made to feel so much fear in revealing their true selves. I mean, what the hell is wrong with our society to make ANYONE live with that kind of fear?
So on this night, 11/12/2017 10:42pm, our conversation began again. “Is this the Dave Hingsburger who worked at West Toronto Secondary High School in the mid 1970's? If so, do you remember your friend Annie ("Gerry") Hull?”

Then a second try on 11/17/2017 9:15pm, “Now I know it's you guys! Yaaay! Wow! Do you remember me? We were good friends in the mid-70's. It's sooooooooooooooo good to "see" you and Joe again. I bet he still has that awesome laugh that grows from the very pit of his stomach and just keeps growing. I still remember that infectious laugh. I am really interested in your work on abuse. I know a little about it. After 30+ years of marriage, I had to end it when my ex became highly abusive. The only way I could end the abuse was to end my marriage, so I did. Anyway, I'd love to hear from you guys if you want to message me back.”

And on 11/24/2017 7:48am, contact: “Hi Annie, of course we remember you. Of course. I'm sorry I haven't responded before, I travel a lot and lecture and I get behind on stuff. I tried hard but I couldn't get that picture to enlarge so can't really see it. I am so sorry to hear about the abuse ... you deserved better than that. I hope you are okay, inside and out, after suffering through that. I have so many other questions for you. Let's start, where are you and what are you up to??? (You were the first person to introduce me to the idea of disability pride and as a disabled person now, I thank you for that a thousandfold).”

Disability pride? What? Why on earth is Dave thanking me? For what? I don’t understand. I talked about disability pride? I mean, it’s an awesome phrase, and it does sound like something I’d come up with. I probably heard the (then) new term “gay pride” starting to be commonly used and in thinking on my own positive beliefs about my own disability and disabilities in general (which is a whole other article by itself), I simply combined the two concepts.

After chatting online with Dave, I now kinda remember my nattering about “disability pride” but clearly Dave remembers it much more than I; and I’m soooooo glad that when he needed those two simple words for strength, he remembered them and kindly thought of me. I’m also very happy that I can now return a huge thank you to Dave.

In recent weeks (and months) I’ve needed to shift my focus to self-employment. In doing so, I’ve been given the opportunity to avail of a few very good mentors and I’ve had some discussions around the concepts of “branding” and “self-branding” – i.e. creating an identifiable brand that would become associated with me.
Speaking with all humility, I do sincerely believe that one of my best gifts is writing. I love to write and I write in a few different genres. (I love to tongue in cheek say: “Writers write, right?” Hahaha!) I’ve also pretty much always (from an extremely young age) viewed my disability in the positive. I feel I was meant to be as I am, because much good can be demonstrated from me just being the me that was I created to be. I’m soooooo comfortable with my disability that I simply think of it as just one aspect of all the parts that make up who I am and I wouldn’t be “me” without it. That’s not to say I don’t have times of frustrations and challenges. I certainly do, but all in all, I would not remove it from my life.

When thinking about an identifiable brand for myself, a natural “brand” became as clear as the cleanest glass – “Disability Pride!” and if Dave had not reminded me of that term…… Now disability pride feels purposeful, full of strength, with much good to come through it.

So first, THANK YOU DAVE!!!!! Thank you for remembering two simple words from a relatively know-nothing 16 year old who most certainly then thought she knew it all.

This piece is from Annie's site.

Monday, March 05, 2018

The Shoulder

I knew I was about to fall.

They look so small, and frail, not sturdy at all.

A couple of weeks ago, I did something stupid, and really over stretched the muscle in my right hip. It reminds me daily.

She is so young, still so little, with so much growing to do.

I haven't been really steady on my feet since then.

She giggles, tells silly jokes, and claims to have a thousand different voices - her favourite is the Queen.

My greatest fear. Absolute greatest. Is of falling. Of the hurt that would follow. And the need to get up afterwards.

She is fast, and light, quick silver has nothing on her.

Falling. Terrifies. Me.

She is also loyal and determined and brave.

And I was about to fall.

She is what my mother would call 'a wee slip of a girl.'

I had stood and turned too quickly. My balance left me.

She builds forts in our basement with her sister with walls a thousand hundred feet tall.

I didn't cry out. I didn't have time.

She loves stuffy animals and always needs just one more.

I looked around, panic struck.

She has hair that is styled by an angry Greek goddess.

All I saw was Sadie, an 8 year old girl, playing with her sister.

She loves being a girl, she loves what it means to be a girl.

"Sadie, give me your shoulder!!!"

She knows when to be serious, she knows when to help.

She ran to me and let me take her shoulder.

She knows that she has an important place in the family, she knows she is loved and needed.

I managed to right myself.

She's a little girl, a child, a puff of air. 

I felt her gather her strength and stand firm, her shoulder never moved.

She is strong when she needs to be. Very strong. Shoulders not frail at all.

Never underestimate, the weight that a girl's shoulder can bear.

She smiled up at me, seeing me steady, and ran back to play.

Never underestimate the power of a girl.

Sunday, March 04, 2018


Pringles were on sale.

Perhaps I should have written that sentence with a few exclamation marks. Let me try again.


Ruby and Sadie came into do some grocery shopping with us completely uninspired by the idea of, in their minds, drudging around the store while we shopped. We got a cart, one that was hard to push, and the girls took turns pushing it, enjoying the challenge of just trying to get it to turn. We came up with a couple of games, 'Spot the ...' is a great game for finding stuff in a store. Find the diced tomatoes in this huge mess of canned tomatoes.

But things lit up when we went by a bin full of PRINGLES ON SALE. And apparently PRINGLES ARE THE VERY BEST KIND OF CHIP AND WE LOVE PRINGLES SOOOO MUCH. Sometimes children speak in ALL CAPS. So the deal was 2 for 4 dollars. They both love the Cheddar Cheese Pringles more than any other flavour and they could cope with the regular ones if they couldn't find the cheese. Then it began.

They tore into that bin pushing the tubes this way and that on a treasure hunt, for real, each of them burrowing into the bin. I sat back and enjoyed them enjoying the hunt. Some people came by and looked at me and then at the kids and of those some had sad smiles and shook their heads at my lack of concerns about two girls half buried in Pringles tins. But, me, I didn't care. They weren't loud. They weren't in the way. They weren't doing any harm. And they were having fun. And a lot of it.

When they came up for air they had found the one cheddar cheese tin in the bin and the one regular tin. Victory. They would have preferred two of the cheese, but this would do. Sadie and Joe headed off to get something and Ruby and I took the cart and turned to go down another aisle. It was then that Ruby noticed that there was a shelf full of nothing but cheddar cheese Pringles. Laughingly the swap was made.

I rolled along thinking of the looks I'd gotten for being lenient about their frantic search. (Again, big deal. It's a bin of Pringles.) I remembered Ruby telling her mom about being somewhere where the adults supervising were strict and took the fun out of things. She was bemoaning what happens to adults that makes them that way. Joe and I protested. She said, "Not you guys, you're not adults, you're ... you're ... you're really old kids."

We laughed a lot at the description.

And we decided that that's a pretty good way to be thought about.


Saturday, March 03, 2018

No Apologies

There were a few moments yesterday where I felt that it's all going to be okay. I hadn't felt that for a couple of weeks and it was a relief. One day this week I was making veggies and eggs for breakfast, something I've done a lot and suddenly, I was overwhelmed and couldn't think of what to do next. It was that point that I realized that I needed to create some space that didn't have pressures from work, either job, or the mountain of writing I have to do. I need to breathe.

Taking care of oneself isn't something that comes easily to many of us. There are other needs, more important needs, that take precedent. Then things get shoved aside, for the first time since I started going I haven't gone to the gym for two weeks, haven't done that at home exercises either. Too tired, too stressed, too much stuff I have to do in the evening.

I don't burn out, I wear down.

And that's what I need to deal with now. In two weeks I've not only not been to the gym, I haven't been out at all. Home, work, home, work, home ... two weeks.

I'm going to the gym today.

I'm going grocery shopping.

I'm going to the mall.

I'm going to the movies.

All this weekend. I'm filling it with stuff I like to do. I can't fight for community living and lose the experience of it at the same time.

So bring on the weekend.

Take away the stress.

If you are there, at a spot of being burned out, worn down, or run ragged ... take a breath. Join me. Make this weekend about you, apologetically.

Friday, March 02, 2018


Photo description: Black boarding set up with seven pieces of white paper displayed. "Mourn for the Dead And Fight for the Living" is written in read above the sheets of paper. The sheets of paper are fully covered by name."
Yesterday afternoon we went over to Newmarket's first vigil in honour of the International Day of Mourning for People With Disabilities Killed by their Care Providers. I'd never been to one before and was intent on making it there this year. It was a beautifully simple vigil with a brief introductory talk, two reading, but the focal point was the reading of nearly 1000 names.

I have always believed that the names of disabled people are important. People with disabilities have been buried in graveyards and marked with their file number. Their names might identify who they are and who they were related to, they were buried, nestled in their coffins next to shame. Names break through and state "This is who I am." Names challenge "And this is what you've done to me."

There were so many children. Babies. I winced when I heard their names, how could this be? How does this come to pass? How deeply are we feared and hated? It gave me some kind of comfort to know that they are not forgotten, those of us who never knew them, those of us who now will never meet them, hear their names. Once a year they are spoken of.

They say that you die two deaths. The first is the death of the body. The second death happens the last day your name is ever spoken. We could not stop the first death, but by God we can delay the second. Their names were spoken all over, wherever a vigil was held. Candles may have been burning during the ceremonies, but it was their names that lit the room.

Tuesday, February 27, 2018

What He Said

Having gotten another winter cold, I've been watching a fair bit of television and getting toned and tanned from surfing the sunny beaches of the internet. I noticed that there has been a resurgence of posts about the 'r' word that either decry it's usage or offer other words to use instead. Knowing, from deeply personal experiences, how hurtful words can be, I've long supported the use of careful language. I have found the elimination of some words from my vocabulary has actually increased my ability to express myself. I don't need to use words that hurt when there are a billion words that don't.

Then I watched a series on Netflix and in it the 'r' word was used, as it is always used, as a pejorative, a put down. I bristled and considered watching no further. I could see that the writer was using this word as a means of showing the character of the person speaking. It was a commentary on his nature that he'd use such language. Later on in the show, the primary character speaks up and states that the 'r' word isn't an okay word to use.

But all that's just introduction.

There was a scene where a character who has an intellectual disability, is involved in helping the primary characters out of a jam. When the plan is successfully executed he said something like, "Nobody expects anything from the 'r#tard'" as his explanatiion as to why the plan worked. He's right of course, but, I had a very different reaction to him using the word. He used the word in reference to himself, he used it as a person with an intellectual disability. And to me, that seemed acceptable, not that anyone needs my approval or anyone's approval to speak of themselves as they so choose.

I have never been criticized by another disabled person from using the word 'disabled' in reference to myself or to use it without the person first structure. Lots of non-disabled people tackle me on it. But I have always felt free to say what I want about myself and to me the words 'cripple' or 'gimp' are up for grabs - with or without your opinion.

In the context of the scene, I felt the same for the character with a disability. His mouth, his voice, his choice.

I'm not sure how you would all feel about this, but I think it's worth talking about. Who gets to say what in the disability world - and is there a limit on choice for people with intellectual disabilities which doesn't exist for other people with disabilities?


Saturday, February 24, 2018

The Death of Tolerance

"It's just my opinion, you need to respect my right to my own opinion," he said. We were having a conversation about Billy Graham and his death. I had put something up on my Facebook page and have since been embroiled in the real world with discussions that began with upset at what I was saying. I had said, and this is really lazy, it's early, I'm still not fully awake, and I don't feel like flipping over to get the exact quote, something about wanting people to understand my reaction to Graham's death in the context of my life. Then, I quoted Graham: All homosexuals should be castrated.

Later someone pointed me to an article that stated that it is 'unproven' that he made that statement. Bad on me, I should have done a double check. However, I then read about his statement "AIDS is God's punishment on gay people." Well, swapping castration for death, as it was conceived at the time, isn't a step up. He did later apologize for that, not because of offending gay people but for representing God as acting in that kind of manner. There are others, many other comments made by Graham that shows his homophobic way of thinking, so, even though I posted an unproven quote, the sentiment behind it is true.

Back to the discussion of opinions and my need to respect your opinion and your need to respect mine. This is a fine idea but, in many cases, it's not possible. Because, of course, not all opinions are equal.


Coke Zero is the best diet cola, in my opinion.
No, I like Diet Pepsi.

These two opinions are equal no one is hurt by either one, it's a disagreement, even a FUN argument to have. I love those kinds of debates because it involves developing a clever argument and verbal sparing with another.


Gay marriages are just 'parody marriages' and not comparable to the beauty of a marriage between a man and a woman.

I am married to another man and I believe my relationship is equal to yours.

By the way I used 'parody marriages' because the GOP in the United States of America in some state or another, they have so many of them, is calling all LGBT marriage 'parodies'.

But this is an unequal opinion. Why, because holding one can cause hurt to the other. For example, my opinion does not hurt you, does not threaten you, does not declare you a lesser being. The other statement does. It's an opinion, yes, but it's also an attack.

You expect me to respect your opinion that I am less.

You expect me to honour your right to an opinion that is marching towards my undoing.

And you resent my anger and passion and tell me that it's "Just my opinion." Well, as I said to one of the many who I disputed with over the last day or so, "It was also my opinion that you were my friend and that you respected me. I guess I held an opinion proved wrong." Then it got really nasty. Endings often are.

I do respect the opinion of others.

But I demand that others allow me the right to change my opinion about them and our relationship and about what happens next.

I was asked "Where is that tolerance you always speak about?" I didn't react by saying that I never talk about tolerance, I don't want tolerance I want equality.

"In this case," I said, ending the conversation, "it died."

Thursday, February 22, 2018


We planned it well, even though by accident. The Campbell Museum in Newmarket is currently hosting a traveling exhibit on the Underground Railway and we really wanted us all to go. It's an important and powerful story of bravery and the incredible call of liberty and freedom for the enslaved. We knew that there were many powerful women involved and hoped that their stories would inspire the girls, to know that they can have an effect on the world in which they live.

We picked them up and the schools and headed over to the museum. Marissa got there first and we pulled our car into the disabled spot. Once in, the tour began. There were several people there to help out and answer questions and to take us through parts of the exhibit. They were warm and friendly to the kids and they respected them. They didn't try to soften the story of slavery because of the kids age or gender. It was inhumane in capital letters, unthinkable in red letters and a bruise on history that will never fade. It was serious stuff.

The journey round the exhibit had interesting activities, like deciphering the code words in spiritual songs or learning how to read the picture book of symbols on a quilt (that was remarkable).  Ruby who loves codes and decoding took singular interest in that quilt and within moments understood all the symbols and meanings in the squares and was able to read each one of them.

Afterwards, a bit emotionally exhausted, we all went out for dinner.

We don't think of it often enough do we? What it is to be free?

We don't think of it near enough do we? Given and circumstance and a time, who would we be and what we would do.

Knowing what we as humans are capable of both the brutality and the bravery should challenge us to constantly evaluate the world we live in and the impact we want to make on it.

Then came into the restaurant a man with a disability, probably 10 years older than me. He was being pushed, bizarrely by a big guy wearing an orange coat adorned with yellow reflective material. As he came by the table he gave me a brief wave and a huge smile.

This was a man reveling in his freedom, soaking in it.

What is it to be free?

And what do we do with that freedom?

Wednesday, February 21, 2018


It happened again.

We were at the ROM, which was full of kids activities for the Family Day long weekend, in a large hall with various tables set up to do various activities. It was full but not packed so we could easily move around. There were a group of kids, two boys and a girl, who were running around together having fun. They were careful how they ran so they weren't bumping into people. They were kind of fun to watch.


I pushed myself round a small crowd gathered at the fortune telling table, the oldest kind of fortune telling was on show, it is a museum. Then I noticed that the kids had stopped running. A little boy, maybe six, was standing with his parents. They were waiting in line and chatting. his back was pressed up against his mother's leg. He looked terrified. The run-around kids had stopped in their tracks and were staring at him.

They talked as they stared. They wondered what was wrong with him They thought and said clearly stated that it must be awful to be him.

He had a facial difference.

He knew stares.

He knew ignorant comments.

But he didn't know what to do right then.

He may have been taught, but it's hard to practice skills when you are pinned in time and space by piercing stares. I know this.

I pushed myself slowly until I was in front of them, the kids. Let them stare at me, I thought. Let them. The boy, once partially hidden behind me, immediately turned and buried his face in his mother's skirt.

I asked him if he was having fun.

A stupid question in that moment, I know, but I didn't know what else to ask. I just wanted his face back out, he has nothing to hide, difference is just difference.

Brave kid peeked out at me and smiled. "Most of the time," he said.

The kids were gone. I waved goodbye and so did he. His parents never noticed a thing. This is not to suggest that they were bad parents, not at all. It happened in seconds. They were in conversation like other parents there. But they were here. With their kid with facial differences, together as a family.

Families know.

People with disabilities know.

That this is rebellion.

My take is that since I know what it is to be stared at. Since I know what it can feel like to be alone with your difference in a crowd. I have a responsibility to act. Not make a scene. It's not my scene to make. But to do what I can to take action, to provide support, no not do nothing.

Then I went to have my fortune told, joining Joe and the kids in the line up and was told that I should avoid lawyers. I kid you not. Everyone else got prosperity and I got a lawsuit.

Monday, February 19, 2018

Taking Gifts

The drop off for disabled people at the Royal Ontario Museum is a fair piece from the front door. We were there right at ten when it opened so the side door, which opens an hour later, was locked. That's the door that's closest. I have made this push several times, it's hard. To get from the drop off to the front door you have to roll uphill on a fairly steep slope. This means I have to use my right arm to push up and over and my left hand to hold the other wheels steady so I don't swing downwards. I can do it, but it's work.

Ruby and Sadie were walking with me as Joe drove off to park the car. Normally they ride with him because I like to be able to focus just on making it to the door. Mind and body are all involved in this. But I've done it a few times, so when they wanted to get out of the car and come with me, I thought, "Why not?"

Once and passerby took a step towards me to help, I caught his eye and shook my head. He was cool because he quickly stepped back and gave me a thumbs up. This happened so quickly that the girls didn't even notice. Wonderful.

Then suddenly my pushing got a lot easier. Sadie had come behind me and decided to help me. In an instant I had to think through this. I wouldn't let Joe do this. Sadie isn't Joe. I wouldn't let anyone do this. Sadie isn't just anyone. Then, I heard the girls laughing behind me and I asked why. Ruby said, "Sadie is pushing you and I am pushing Sadie."

So there I was an old fat man in a wheelchair with two children behind me pushing as hard as they could to get me to the door. And wouldn't there be a line up? Yeah, there was. A gathering of gawkers. I needed, I knew, to make a decision and to do something. I felt the pressure of their eyes, I felt the pressure to prove myself able, I felt the pressure of my pride pressing hard against the shame that lives at the back of my mind. I had to do something.

That's what I did. I decided that the something I needed to do was nothing. The girls were helping because they wanted to help me. I help them all the time. This is reciprocity. An act of giving back. And they were laughing while they did it. Gawkers gawk so gawk they did but they often never see what's in front of them. I am not responsible for what they see or how they see or how they will describe this later.

They pushed, I pushed with them. we were one in rhythm.

When we got to the door, I asked the girls to give the control of the chair back to me so I could turn and get over the bump into the lobby. I explained, in the lineup to drop off our coats, that they couldn't push me in the building because I needed sole control of the speed and direction of the chair so I didn't run into people.

I saw a new idea form in two sets of mischievous eyes but they agreed.

I don't know what those who saw the girls get behind and push me.

And I say this with complete and utter honesty, I don't care.

When children want to give, when their impulse is to help, when their heart is in the right place - you take their gift. You honour that gift. You cherish that gift. Because the privilege of being able to watch hearts grow is one not to be taken lightly.

Saturday, February 17, 2018

Internal Alchemy

I was in a mood. Grumpy. Unhappy. Depressed. I think if Joe were describing it he may have used the word 'Unhinged.' He'd be right. Things that would have annoyed me simply enraged me. I felt put upon. I felt the world was against me. Me, a vegetarian, bit Joe's head off - that's how bad it was.

We got home. Instead of going in I asked Joe to pick up the gifts we picked up that needed to get wrapped and put in the mail to be sent off to birthday parties. He got them, along with scissors and tape and we headed over to the mall. I pushed myself up the slope into the place and then got to where we usually start our mall walks.

When Joe got in after parking the car, I asked if we could do a mall walk. We've been doing this a little less because I've changed in shape a little and now bruise my right forearm when pushing hard for long distances. But we both decided to go. My argument for going: I need to get my head right. Joe thereafter readily agreed. 

We had done our first kilometer, a full turn around the whole mall, and I wanted to do it again, I felt better, but no internal alchemy had turned feeling like shit into feeling like gold. So off we went again. It was about 2/3 the way through that the bruise that had formed on my arm in the first go round changed, the skin had now been broken. That's not happened before. But, I needed to do this, so I did. We finished the second kilometer and then headed down the elevator to do a lap of that level and stop at the store to mail the gifts.

First we had to pick the cards. then the wrapping paper. A group of young teen boys came round behind me and one of them, with shoulders wide enough to brace the door for a politician's ego, bumped into a display sending chocolate bunnies to the floor, and I swear they immediately started multiplying. I said to them, "Great you know they are going to blame the cripple right?" Then to their shocked laughter, I said, "Wait let me get my phone out and take pictures to prove my innocence." Now they knew I was really joking and they started a low rumble of the laughter of boys whose voices have only recently changed.

Then cards and paper in hand, we went to Timothy's for a tea and a table. There we wrapped the gifts, wrote in the cards, finished our tea and headed to put them in the mail. After that we continued the downstairs mall walk, it's much shorter than upstairs but by the time we were done, the break in my skin was really sore and I decided not to do a second round. But it was okay. I'd burnt out the flame. I was feeling better, both because of the push and because of the time focused on sending a gift far away with the wish of happiness and good will.

Turns out that for me at least, I can turn shit to gold through exercising the body and exercising the heart at the same time. Aerobics may make the heart beat faster, but loving makes the heart beat matter.

Thursday, February 15, 2018


After work yesterday we parked at the grocery store and went in. It was time to do Valentines Day. This is a day that Joe and I used to call "Heterosexual Pride Day" as we watched commercial after commercial about men and women and love and adoration. "Nothing says love like a diamond," we were told in dulcet tones and I would quip, "well, nothing except a day treated with respect." Our love, then hidden, chafed at the manacles that chained us to the closet.

Over time, we just came to ignore it.


If I am found dead one February 14th with a Valentines Card in my hand, lock Joe up for murder because surely he knew the shock would kill me. We don't do Valentines.

At least, until Ruby and Sadie came into our lives. We were transformed into pinks and purples and princesses, oh my god the princesses, and, of course, Valentines Day. They love it! The cards the chocolate the whole messy thing, they anticipate it and explode with Valentines excitement. There are some forces where resistance is futile and a child's expectant face is one of them.

So, we went shopping for a card and a gift. We decided to forgo the chocolate this year and instead bought them each a mango, it's healthy, it's sweet and they like them. We got one for their mother too, what the heck once you start Valentineing it's hard to stop. We picked up cards, ones that weren't creepy when given by old men who are relatives - which were hard to find. But we managed.

Then we were off to drop the whole mess off at their home and to wish them all a happy Valentines Day. We got there just after the bus arrived and when they saw us in the driveway they literally jumped with excitement to see us. They hadn't known we were coming. That was their gift to us. And the cards were handed over, okay one red wrapped chocolate in each card, along with the wrapped up bag of mangoes.

We drove away tired.

I was just about to say "Happy Valentines" to Joe when he said, "Don't, I'm driving, you trying to kill us?!"

Tuesday, February 13, 2018


Photo description: a bright red welt on the inner forearm

I am waiting to be assessed.

I desperately need a new wheelchair.

I no longer feel safe in this one.

But who will the assessor be?

I've seen the wheelchair I really want.

I've tried it out and felt like I was floating.

It fit me instantly I felt secure.

But will they listen to me?

I know the chair I want is expensive.

It cost twice as much as the care I bought at 16.

It is light and easy for Joe to lifet.

But will they value my opinion, will it matter?

I get bruised from using this chair.

I rub my arm against the arm.

It takes only a kilometer before the pain starts.

But will that matter?

Who will my assessor be?

And I now I know how people feel

  when the assessor is me.

Monday, February 12, 2018


If we are all on the same side, why aren't we kinder to each other?

When I first became disabled, I knew of the disability community. From a distance it looked like a supportive community where it was safe to be different and safe to share struggles and safe to participate in the advancement of rights for ourselves and for those like us. From a distance it looked a lot like a Bette Midler song.

I have been attacked before, from within the disability community, for stances I've taken, for the way I've expressed myself, for holding divergent views. Some of these have been painful attacks seemingly motivated by anger and intent to hurt, but some others led to me learning and changing. I'm not opposed to debate and disagreement, I think they are healthy, but when laced with a kind of unfathomable hatred it's not debate and it's not disagreement it's emotional disembowelment.

I received one of those kind of attacks this morning about the post I wrote yesterday. I knew when writing it that the likelihood of success was somewhere below zero, but I also knew that because I was so touched and moved by "This Is Me" that I wanted to try. It costs nothing to try. It costs a lot to decide to lose before starting. So I wrote the blog and a number of people have, wonderfully, shared it. The chance of it being seen has moved up from less than zero to zero and that is a little victory in and of itself.

But, I was told that, "as usual" I was focusing on trivial issues with no chance of success and needed to face the real issues facing the disability community. Apparently I need to "focus my considerable energy" on what matters to the person who wrote me, who damned me, who ridiculed  my efforts. Firstly I was glad to find out I had "considerable energy" because it doesn't feel like it, day to day, in my real life. Secondly, I felt like I was being told that I was a bad disabled person doing meaningless things.

"Hold on," I responded, "aren't we on the same side?"

I learned then that I was a "shameless self promoter who does things for attention rather than for social change."



I've seen these kind of attacks happen on line to many disability activists from other disability activists. Infighting, it seems to me, takes time away from our job of making change. It gives an excuse for lack of action. I don't care what front you are fighting on, what battles you choose to pick, we are WARRIORS, and the battle is far from won.

I salute those of you who fight the fight in whatever way you choose to fight it.

You don't need to salute back, but maybe you could approach me unarmed.

Sunday, February 11, 2018

The World's Greatest Showman: An Open Letter

An Open Letter to Benj Pasekand Justin Paul, song writers; Keala Settle and Hugh Jackman, actors and singers; Lawrence Mark, Jenno Topping, Peter Chernin, producers.


I went to see The Greatest Showman not knowing what the story was really about. We went because we had two children to take to a movie and this seemed like a good fit for time we had available. I took my seat near the front, in one of the spots for disabled people. I am a wheelchair user and my choices for seating are both diminished and often made for me. We, along with the kids mom, took up a fair number of seats and got settled early. We love movies. We love the pre show and the previews.

The movie started.

I have been stared at all my life. Almost every day of my life. I have never felt part of the world around me. The messages I have gotten about my right to be, here, now, have been harsh and exclusionary. From looks of disgust to open mocking, I do not meet welcome outside my door. You can imagine how this movie struck me. It hit too close to home and it felt ... wonderful. Then the song came on 'This Is Me' and I sat quietly in my wheelchair and wept. This was for us, the different, the disabled, the visually different. It was our anthem, written with us in mind. I didn't know, then who wrote it, but I loved them in that moment.

I have showed the lyric video to almost everyone I know. I wanted them to see in there what I felt in my heart. Acknowledgement. Welcome. Understanding. And they did.

Then I watched a performance of Ms Settle in Melbourne I think it was. The performance was impeccable but ... the chorus was made up of beautiful, thin, able bodied people. Instantly we, the disabled and different, were eradicated. I wondered who made that decision? I wondered if anyone cared about that decision.

We already know that people with disabilities are underrepresented in entertainment. Vastly so. Here was an opportunity to diversify a performance in service to the performance and it was cast away. It hurt. It made me wonder if you all learned anything from the roles you played or the songs you wrote. But I believe you did, you couldn't have moved me like you moved me in the theatre.

Here's why I'm writing. Maybe you could do something for the disability community, those of us who wear the differences that live at the other end of pointing fingers. Maybe you could insist that when the song is song there is someone in the chorus, someone on stage, who IS different. Who embodies the meaning of the song from the movie you worked on.

Maybe the Oscar performance could have at least one disabled singer or dancer on stage.(I can send you a list). Maybe you could push the boundaries of Hollywood, maybe you could increase the chances for disabled actors and singers and dancers to get work.

Why not just say this song requires one of us, a talented one yes, but one of us on stage?

Reaching you will be difficult. Getting this read by someone that matters will be difficult.

But we are warriors.

And because of that, I'm trying.


Dave Hingsburger

Saturday, February 10, 2018

Lessons Learned

Lessons learned.

There is a fully accepted cultural myth about people with disabilities who live within service systems. That myth shows itself most clearly after an inquest or a newspaper report or a splash on social media about the often violent abuse or the deadly neglect experienced by people with disabilities by the people who are paid to care for them. To be fair, we live in a society that easily 'understands' the murder of a person with a disability by a parent, so society's expectation of care providers isn't a high bar to get over. But there are those situations where the abuse is so bad, the neglect so disgusting that it can't leap over the 'maybe better dead' bump in the road.

Then there is the faux outrage of the public. People say things like, those people who did that should be killed, or who could do that to a disabled child. "Child" is often used even if the reports are about adults in care. These are exactly the same words that people use about a puppy being beaten, or a cat being starved.  It's laudable outrage, but it's outrage waiting to move on.

People with disabilities within the system however, do not. They wait, those who have been given the opportunity to be informed, to find out what a report says. A bunch of people get together and craft written responses. There are the public relations kind of people who write something for the agency that housed, fed, and watered the abuse. There are the people who craft together words to appear in a report, each tacking a different angle from a different respect, people who are able to turn a rampaging elephant into a slightly pissed off bunny.

And then they all say it.

"There are lessons to be learned here."

"We have to pay attention to the lessons learned."

The public buys it. The media buys it. Lessons have been learned - good we're done.

The myth is that we as people with disabilities are so exceptional, so different, so unimaginable in our needs that it takes real, deep, thought to craft a system to support us. That our needs are 'special needs' and therefore we need 'special' people to provide for those needs. That our exceptionalities are so exceptional that only exceptional people are gifted with the ability to deal with the ugly realities of who we are.

Look at the public worship of those who assist us. You must be so patient - as if we are very trying people whose needs are burdensome even when paid to provide them. You must be so kind - as if it takes an extra bunch of kindness to spend even a little time with us and our bodies and our faces and our words. This is followed by "I could never do that!" The suggestion is that you with your goodness you go do that but me, keep the grotesques away from me.

The lessons learned? Pablum. That's all pablum. Easy to digest. Easy to find profound.

Provide medical care when necessary.

Provide the basics of life.

Don't slap or beat the shit out of them.

And if you do, please clean it off the floor.

Let me make this clear from this disabled man's point of view: There are no lessons to be learned.




We need the basics. Food and water, shelter, clothing.

We need the basics. Good medical support from the health care system.

We need the basics. Respectful human interactions.

We need the basics. Opportunities to grow and develop.

Sure there are more, lots more. But they are all pretty basic. They aren't exceptional for anyone else so why are they called 'special needs' or 'exceptional needs?'

When will we have an inquest where the lessons learned about about the system and how hierarchy and power breeds violence and neglect. When will we hear about the system and not ourselves. When will the stories be about the dark dank places where we sit in our own feces and how they came to be? How did society allow it? How did management avoid seeing it?

Until then the lessons learned will use our bodies and our regular and ordinary needs as a way of justifying their actions and blaming us the victims simply for being.

Our being caused our abuse.

In a world that lauds our death on screen, in newspaper op eds about parents killing disabled children, in classrooms where children have to decide who to throw out of the boat, this makes sense to them.

This is how they see us.

Be grateful for care because, of course, you don't deserve it.

Friday, February 09, 2018

BS on the Corner

He was standing on a street corner waiting for the light to change. It was very cold. It was snowing. Walking on foot, or rolling in a chair, was dangerous for everyone. I had regretted taking the power chair out the moment I slid down the driveway. But, in true Canadian fashion, I just motored, on because we own winter.

After finishing at the mall I headed back and arrived at the corner along with everyone else. I noticed him because I'd seen him before. He has an intellectual disability, he is also completely independent, I've never seen him with a support person, sadly I've never seen him with a friend either. But there he stood waiting for the light to change.

There was talk around him, people assuming that if he has one disability he has them all including deafness. So the talk was loud and unguarded, he either couldn't hear them or understand them, so it gifted them with the right of commentary without considering him.

The commentary was about the weather and his lack of an 'escort' or 'you know, someone to make sure he's safe,' or 'a babysitter.' I looked at his face, he just looked weary. He didn't say anything.

I didn't want to step in for him.

I just said what I would have said if it was happening to anyone else.

"He can hear you, you know?"

They were all shocked. One leaned down and whispered, "Yes but I don't think he understands."

"And that makes it Okay?"

They looked at me the windy whisperers like I'd lost my mind.

"You're disabled, you don't understand that we're just concerned for him."

The light changed and all headed across, all I could do was shout out, "Bullshit!"

Thursday, February 08, 2018

Sans Wall

Yesterday morning, buck naked in my bathroom, I attempted to do an exercise that I had been shown the day before by a work colleague. It involved balance. I'm not good at balance. But she had made it look easy, forget the fact that she's been doing it for a year, and I wanted to try.

I'm a wall walker which means I can walk a short distance without falling if I have a wall to touch to help orient myself in space. This has something that hasn't changed no matter how much exercise I do, it just is. But in my head, naked in the bathroom yesterday morning, I thought I'd give it a try sans wall.


I would like to say I managed it for a few seconds but it was immediate catastrophe. There wasn't enough time for me to save myself or brace myself. I crashed into the bathroom counter leaving a first welt then bruise.

And it really. Really. Hurt.

In talking to my coworker she was all apologetic and I stopped her and said, "I'd rather have tried and been bruised than not tried and not know."

I feel like that about life a lot.

Particularly life as a disabled person. Limitations suggested by others are often very much lowered and I have had, and I know a lot of disabled people who have had, to fight to try, fight for the right to fail, fight for the possibility of succeeding.

It could have been that I didn't fall.

I did.

I know that now, no wondering.

Except if maybe one more time ...

Wednesday, February 07, 2018

Does It?

I don't want to offend anyone, and I'm not pointing out any specific person. I want to comment on comments that I've received about yesterday's post. Comments made to me personally by readers, comments made in written form and, as per usually, a pretty strong set of comments sent through email.

I had written about a woman interrupting my workout to point out that my shirt had rolled up and that my belly was showing, even though the shirt hadn't rolled up high enough to expose any skin. I had said that people intrude into my life because they see me and my weight as invitation to speak, interrupt or pull my attention towards them and their thoughts.

The comments made essentially said that she was probably like that everywhere with everyone. That I was reaching when I tagged her behaviour with my disability and difference. That it probably was personality, not prejudice. That I needed to start to take a more positive view of situations. That I needed to take a look at the larger picture rather than being so focused on my own experience.

In essence I was lectured.

I understand every single comment. I think that most people were attempting to be helpful, even uplifting, even if that's not how I felt about them.

One of the problems that minorities have, in my opinion, is that when they give an example of the subtle racism or sexism or homophobia lived with daily, people can brush it off saying, well that happens to me sometimes, so it can't be evidence of prejudice. Then they walk away assured that we all are exaggerating and their own sense of privilege goes unchallenged.

Here's the problem, we who live with difference or disability understand that our experiences of, say people stopping to comment on my body, on my weight, on my disability, is constant, not a one time incident. There is a pattern of behaviour, a frequency of behaviour, an intensity to the interactions that tell us the PREJUDICE IS THE BIG PICTURE. I don't hear non-disabled people or people without differences talking about the everydayness, the several times a dayness of public intrusion, of public reaction, of stares and of fearful glances.

So please realize that when I give an example, don't work so hard to explain to me that what it means to me, what it means in my life experience, goes far beyond what happened in that moment. It's another social kick with the power to bruise and bruise and bruise again.

It feels like dismissal.

It feels like a proclamation that prejudice exists in my mind only.

And I know it doesn't.

Does it?

Tuesday, February 06, 2018


I had put in a really hard workout. I'd gone 4.5 kilometers on the ergometer at a resistance level of 18 which was a new personal best for me. I was bathed in sweat from that but then I moved to the second part of my workout, the cable machine. I spend about 45 minutes on the machine doing a variety of different exercises. I enjoy this part because, unlike the ergometer, I change exercises every few minutes.

The last exercise I do is the only one I need to call for help from the staff. When I started I had to call them 4 or 5 times over the workout because I didn't have the flexibility to move some of the settings when the grips were too high or too low. Now it's pretty much just the once I need help. The staff are young and eager to help so it's no problem when I call them. I had expected, when I first came, a bit of resentment because of the help I needed but I met none. NONE.

But the last exercise I need the cable machine set on the highest notch and the long bar placed on the clips on each side. I like this exercise even though it's hard to do. I have to reach very high, which pulls me as upright as I can be. It seems to straighten my back and set my shoulders exactly right. I do thirty reps pulling the bar down to under my chin. Then I roll back and grab the bar, lean back, and do another 30.

I was on the last thirty. I was feeling good and powerful and healthy. When doing these exercises I close my eyes so as not to be distracted as I count each movement up to 30. I was at 26, I was almost done. I was flooded with feeling good about the routine that day and the new personal best on the ergometer, when I was spoken to ... "excuse me ..."

Opening my eyes I saw a woman, my age, standing and looking at me. I asked her what was up and she told me that my exercise shirt had rolled up and needed to be pulled down so people couldn't see my belly. Let's be clear here, nothing was exposed. My shirt had rolled up but it wasn't at the top of my pants, I was completely covered. But somehow my shirt needed to be pulled down to cover something that would be seen just as easily if my shirt as down.

"I knew you'd want to know," she said.

"I didn't, I was working out and focused on that."

"Well, sorry," she said.

And she was offended.


I don't have the right to be offended at the interruption of my life by a stranger. I don't have the right to a single moments privacy in a public forum. I don't have the right to simple be left alone.

But she has the right to be OFFENDED.

Why is it that our lives are there to be commented on??

Why is our gratitude an expectation??

You understand, she spoke to me about my body and that's okay? Because I'm disabled. Because I'm fat?

And she was OFFENDED.

WT Actual F

Sunday, February 04, 2018

Creepy Weird Me



We had a busy day planned. First up, after breakfast, off to the pool, for Joe and the kids, and the gym for me. After that was home for 45 minutes for lunch and then off to see The Greatest Showman. Because of the timeline we had to cut our visit at the Centre from 2 hours to an hour and a half. We agreed to meet in the lobby.

My workout was hard because it was the day that I decided to up the weights on the cable machine and increase the distance on the ergonometer. I finished up about 10 minutes before the meet up time. I knew that we were going home for lunch, and but I also knew that the girls really liked the chocolate chip muffins made at the snack kiosk there. I got in line and picked up 2 chocolate chips and one cranberry lemon, for Joe. As I was about to pay, one of the fellows, a middle aged guy, popped his head around the corner and spoke to the woman working there. I heard him say 'cup' and 'I'll pay you when I leave.'

Now, I had a moment.

I thought this a perfect opportunity to pay it forward and I said, indicating that I already had my money out, "I'll pay for you coffee, no problem." He looked startled, and said, "No, it's okay." Violating everything I know from being disabled, I said, "I don't mind." He looked embarrassed and said "Thanks." Then he left.

As this was happening I realized that he was just taking a cup to get some water in, not buying a coffee, and then he was going to return to get a coffee. I had just been a bit creepy weird. Anyway, I was in this and so I said to the woman, "Go ahead and add his coffee." She said, "No you don't have too." I told her that I wanted to, I had said I would and I would.

She said that he shouldn't have stepped in to speak to her when she was serving me. That it took her concentration away from me and I was her customer. I realized she was a bit upset. I thought to myself, "Don't be offended for me." I actually said, "I didn't mind at all." She said that she did.

I asked her again to pay for his coffee because if I didn't now I'd just look like an asshole. I mean creepy weird is one thing, and asshole who is creepy weird is scary. But she refused and that was the end of that.

I tried being nice.

I tried to pay it forward.

But instead I messed it all up.

The next time I get that feeling, I'm going to make sure I understand exactly what's going on and I'm going to listen to 'no' if it's said, and I am not going to be creepy weird.

Who knew that being nice could be so fucking difficult?

Saturday, February 03, 2018

Seeds of Discontent

I haven't written a blog for several days. Life doesn't slow down at 65 it speeds up, or maybe it's that it just takes a bit more energy to do what needs to be done. But I have been writing. In the last few days I've had to write letters and make phone calls.

1) I had to write a complaint into the police. A complaint that went completely unanswered.

2) I had to call the newspapers about that complaint.

3) I got by the news desk and was put to a reporter.

4) We talked.

5) She said we will talk again after she checks my facts.

Next ...

1) I had to write a letter to the mayor. It was unanswered.

Next ...

1) I had to write to a government agency to complain about a sub contractor.

2) They gave me a response that was so full of government babble that I actually didn't understand what it said.

3) I wrote and asked.

4) When I did understand the next email it meant that I ...

5) Had to write again and say 'you're kidding, right'

Next ...

1010 calls about my wheelchair.

All of these were disability related. All of these would fall under one of two categories - advocacy for disability rights and access and inclusion or self advocacy for myself as a disabled person.

Some times disability keeps you really, really, really busy.

I felt I was back in the day where I was protesting from a keyboard in all of my free time. The only trouble was back then I believed it would make a difference. Now I believe that I need to do it because silence isn't an option, but I've learned that it seems that not listening is. But my part is done. For now. We'll see what happens. Maybe, just maybe, change will grow from planting seeds of discontent.

Wednesday, January 31, 2018

Let's Talk

Let's Talk.

I remember it happening for the very first time. I was coming down a hallway towards an office where I was scheduled for a consultation. I'd done these a thousand times before and then, I stopped, frozen. I had never felt such intense fear, ever, and by then I was a person acquainted with fear. I fought for my breath, and I knew I was done. I knew I couldn't do the consultation, I couldn't finish the work day. I called Joe. I went home. We had driven over 500k to do that day.

From there my life went straight to hell. I soon lost the ability to go out in public, I now had a fear of collapsing that had turned to dread. I got to an airport, by force of will, about to fly to give a lecture. The noise and the rush was too much for me, Joe walked me back to the car, we called them and cancelled at the last minute. I had never done that before.

I knew I was going to lose my career.

I knew I needed help.

But I was afraid. Afraid of acknowledging that I'd developed a mental health problem. Afraid of it getting out and harming my career. Afraid of what that 'help' may entail. Afraid of being asked to dig to deep through the layers of fear to get at the source of the panic. But most of all I was afraid of appearing weak. Like someone who couldn't just take control and march on.

But an ultimatum came. I was scheduled to go on a lecture tour. This is what I did, I was in private practice back then, I had no other form of income.

I went to my doctor.

I cried before I spoke. Fear. Embarrassment. Shame. I felt all of them. I wasn't sitting alone in front of the doctor. Luckily she was a strong and patient woman. Finally, I spoke. I told her about what had been happening to me. She listened for a very long time. I felt unburdened. I felt heard. But I didn't feel judged.

I was one of the lucky ones.

But getting good care from a health professional shouldn't be luck.

She diagnosed me and introduced me to a procedure called 'Stress Inoculation' and she prescribed a medication for me to use and gave exact guidelines for it's use.

I got my life back.

I still live with those panic attacks, but they are milder and they happen now only just before giving a lecture. That's the only time I take that medication.

Yes, I have an anxiety disorder.

Yes, I have difficulty with depression.

Yes, that's true. It's part of who I am.

And I like who I am, all of it.

Today in Canada is Bell's Let's Talk day. It's when we are encouraged to speak about mental health, to work towards desigmatizing those who experience mental health issues or concerns. People like me. People like you maybe, or at least people you know.

Silence is never the solution to prejudice or stigmatization.

I broke my silence, will you break yours.

Let's Talk, and find commonality.

Tuesday, January 30, 2018

The Kiss in the Lobby

The first time he did it, I was taken aback. My first reaction was one of fear, was anyone watching, were we gong to be safe, from which direction will the attack come. My second reaction came simultaneously with the realization that we were completely alone, and because of that, we were safe.

I had been dropped off at work and Joe was preparing to head back home. He leaned over and kissed me goodbye. He'd never done that before out in public. It seems strange to speak of a deserted lobby in the dark early morning as public but it is, even when you think yourself unseen, you may not be. 

I have a deep seated fear of open public affection. I have held Joe's hand occasionally when we were buried deep inside a pride parade but even there I found myself tensing up, fearing retribution for the open display of our relationship.

Joe was hit by a rock thrown at him as we marched in an early pride march..

We were in a bus full of LGBT people that was attacked by a homophobic mob, we feared for our lives.

Growing up LGBT people were targeted hate filled language and hate fueled violence. We'd seen faces of people who had been on the other side of a police officers fist. We knew we had no protectors. We had to develop our own strategies. Joe and I, we were cautious, we went to bars, we went to marches, we protested when protests needed to happen, we did what we felt we had to do to show our solidarity with others of our kind. But, we never touched and kissing was out of the question.

But now is a different time. My head tells me that. My heart, though, after years of being told that it was defective, and sinful, and perverted, and lustful, and that it would be better for the world if it stopped beating at all, tells me that times change that oppression lingers always around the freedom of those called 'others'.

I see in the United States poll after poll showing the decline of public acceptance for LGBT rights. I see a married couple, two young men, taken into a safe house in Russia because they declared their marriage valid. I see the stats on the rising tide of anti-gay violence.

Amid all this.

Joe kissed me goodbye in the lobby of my workplace in the early morning.

And I didn't stop him.

Now he kisses me every morning, before he leaves and before I go upstairs to my office.

My fear is still my fear.

My fear is still legitimate.

But you know what's also legitimate.

My need to be kissed before I start my day.

Sunday, January 28, 2018


"That's who I am you can like it or lump it!"

"I speak my mind, if you don't like it, that's your problem."

"That's just who I am, if you can't handle it move on."

These kinds of comments abound through both the virtual and real worlds. Like there is culture of pride developing around "the wonderfulness of me now." Any challenge to that, any suggestion that maybe some self reflection is due is met with cries of denial. Unfollowed, unfriended, unliked, you can be cut from someone's life easily. "I DON'T WANT TO BE CHALLENGED ON MY WONDERFULNESS AND MY UNIQUENESS AND THE SPECIALNESS OF ME NOW," and if it takes getting rid of you, I will.

I'm 65, and me now, isn't anywhere near the 'me' I want to be. I'm closer, way closer, than when I was in my 20's (I don't like 'me then' very much, but he's the parent of 'me now' so I cope). I figure the challenge of life is constant, and sometimes painful, growth. I have been helped in this growth by many of my blog readers, many of my Facebook comments, by those who private message me to express their disagreement. I've kept a record, I've changed, over the many years of my blog, the text of a post over 40 times because of comments, people who shone a light on something I didn't know, or something that I'd written that was hurtful. As recently as yesterday I took down a Facebook video that I put up without researching the story behind the video, I was told, gently, to check it out. I took it down.

I'm not yet the man I want to be.

I am not too old for change, too special for change, too always right for change.

My life has me walking regularly through one F.O.G. after another (Fucking Opportunity for Growth) and though I resent the FOG every now and then, I'm usually glad that I got through it, glad for what I learned and glad to have been made different, more gently, more understanding, more compassionate, less judgmental, less harsh, less of me then.

I worry when people celebrate themselves to the exclusion of the idea of continued growth. When me now stops existing and you are stuck at me then for year after year. Arriving too early at 'done' means a kind of death of the drive to learn and grow and change. What next? The coffin's not lacquered yet.