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.