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.

VDAY

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.

Completely.

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?!"

Waiting

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.

Unarmed

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."

OK.

Thanks.

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.

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.

Hello,

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.

Respectfully,

Dave Hingsburger

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.

THERE ARE NO LESSONS TO BE LEARNED.

WE ARE NOT EXCEPTIONAL IN OUR NEEDS.

SPECIAL PEOPLE FULL OF THE MILK OF HUMAN KINDNESS ARE NOT NEEDED TO PROVIDE CARE FOR US.

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.

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!"

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.

Mistake.

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 ...

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?

OFFENDED

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.

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

Creepy Weird Me

So.

Yeah.

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?

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.

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.

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.

F.O.G.

"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.

With Evil Intent

Waiting for Joe to bring the car up to the entrance, I just watched people come in. I saw a young couple chatting away. He was a tall black man and she was a plumpish, but not fat, white woman. They were probably in their early twenties. He was behind her pushing her wheelchair and as the passed where I was sitting, they were laughing about something she said. He stopped, leaned over, and kissed her and then they were on their way. Lovely.

The woman, maybe 50, sitting on the benches across from me said to her friend, loud enough for me to hear, said "Disgusting!" I was angered by her remark. Let's get this straight:

Love is never disgusting.

So, as silence isn't an option, I spoke up. I said that I thought they looked happy and that their love for each other was evidence, "What does race have to do with it?" was the question I lobbed at her.

"Race," she said, "I am NOT a racist. I don't care about their colour I care that he's going to burden himself for his whole life if he marries something like that."

"Something like that!!!" I said. So you think that people with disabilities are 'Things." She wasn't even embarrassed. "And what if they have kids like her?"

"And what if they did?" Do you not believe that people with disabilities have a right to be here.

"Not if I have to pay for them."

"You realize that you are a bigot right, please tell me that you know that."

"I am not. I'm logical. If you contribute, you belong, if you can't you don't."

"So death camps?"

"Maybe, but we'll get to a point where we eliminate you and your kind."

"Next week, when you fall and break your hip, when you have to use a scooter, You want to be euthanized then?"

"Don't be silly," she said.

"I'm not."

And I went for the car.

A New Love

Photo Description: a well used wheelchair that is missing one arm rest and where there are noticeable tears on the seat.

My wheelchair is old, very old. It's traveled to 4 different countries with me, every state in the US but one and every province in Canada but one, every territory in Canada but one. It's got mileage. It shows the wear and tear. And probably most bothersome is it's now a bit big for me, so the arms get in the way of pushing and leaves welts on one side or bruising on the other when I go for long pushes.

We went to the Disability Expo in Toronto a couple of weeks ago and I was pushing by a vendor who had very cool looking chairs. He and I talked for quite a bit and then he let me sit in a chair a size down from mine and 7 years newer. A lot has happened to wheelchairs in seven years. I made the transfer and then pushed. It was smooooooth. I was immediately struck by how easy it was to get around. My chair is wider, heavier and is hard to push partly because it's old and tired.

This was amazing.

It, of course, is wildly expensive. I can't afford it. So that means a long process of applying for government funds to help me get the chair. I want that exact chair. It fit me well and it increased my ability to get around. It's also made of carbon fiber which, I'm told is stronger than steel, but it's very light. Joe loved it because he could lift it with no effort at all.

So the process begins.

It's hard knowing there is something you need but that it will take months and months to go through the process. But it helps that I love this old chair, I love where it's taken me, I love what it's allowed me to do.

Let the assessments begin.

He Hit Me!

I was sitting in my chair waiting for the hallway in to the toilets clear. Joe was trying to convince someone, who was being polite, to go first so I could get in. It was marked as accessible but it was very, very, small with little room to maneuver. And I had to PEE. The fellow finally relented, seemed to now be a bit embarrassed that his politeness was a barrier for my entrance. He nodded to me, I nodded back. It was all good.

I reached down and undid the breaks on my chair and was about to push in.

Let me stop here and tell you where I was sitting. I was right outside the bathroom facing the door. This put me a wee bit into a large corridor. I certainly wasn't blocking anyone. People had been flowing by me the whole time, most choosing to give me more space than I needed. That wasn't a problem because it was, as I said, a wide corridor.

But then suddenly, a fellow chose to walk towards me and directly behind me. No problem. I could wait for a few seconds longer. He approached, walked behind me and ...

struck me.

He struck me.

Two punches, hard, on my back.

He spoke.

"Don't back up!" As if he figured that I was going to back into him. I had been stationary the whole time, I had seen him coming. I knew he was going to be close behind me. I stayed stuck to the floor, waiting for him to pass. There was no chance he thought he was in danger.

But, I didn't think I was in danger.

But he struck me.

This only took seconds and he was gone, down a busy to the point of teeming, corridor.

The shock, and the pain, of being hit silenced me for a moment. He had hit me hard, really hard, and he'd hit me intentionally.

He walked towards me to strike me.

It was purposeful.

And I am left to figure how how to incorporate this into my world view, into my sense of safety outside the door of my house.

I am left with dealing with the fact of the punches.

There's furniture in my head that needs to be moved. Work I don't want to do, but work I have to do.

He hit me.

Does It Mean Us?

Photo description: Nurses from th early 1940's Germany standing in front of large wooden doors set into and old brick building.

Joe and I went to see The Evidence Room at the Royal Ontario Museum.  The exhibit presented the architectural evidence that Auschwitz was purpose built for death. We had been meaning to go for a long time but, for each of us and for different reasons, we found ourselves a bit frightened of the intensity of the experience. But, it closes next weekend and we dug down and made the decision. We would not miss this. We would not allow ourselves the convenient "we were too busy" excuse that people use to avoid what needed to be done. So. We went.

The exhibit was not large, but it didn't need to be. The museum was packed yet we were the only ones there. And while we were there, no one else came in. Before entering a note asked visitors to be respectful of the space, it was impossible for us not to be. I wanted to write about a particular moment for me when I was going through the exhibit, I choose to keep my internal emotional reaction private, mostly because I don't really have the words. But there was a moment.

As I looked at the architectural plans they noted that there were stairs down to the corridor that lead to the chambers. Stairs. Now I know that lots and lots of disabled people ended up at the camp. One picture tells that story:

Photo description: colour photograph of adaptive mobility devises taken from prisoners with disability on arrival at Auschwitz.

But the word 'stares' took me to what I knew of disability history. I went to look for information on Hadamar and the Hadamar Euthanasia Centre. Here was the headquarters of the T-4 program that ordered state elimination of people with disabilities. Now go back up and look at the picture at the top of this blog. You will see the 'nurses' who staffed that center. These were the people who were tasked with the death of individual people with disabilities, tasked also with the elimination of the people who were disabled. They smiled for the pictures with swastikas tattooed on their hearts.

They don't look like monsters.

They never do.

Now let's take a look at some of those that they killed. Some of our own. Our people. Claimed people. They are embraced as part of our history and need to be remembered in order for their story to be repeated not repelled.

Photo description: Picture of three young boys with disabilities who were killed, very possibily by the nicely dressed, smiling for a photograph nurses in the first picture.

Rolling out of the exhibit, rolling away from what is now past not present, what is remembered not lived, I realized how dangerous hatred is when it finds a spokesperson, when it finds a permission giver, when it finds a champion. I realized that I roll myself in freedom, not captivity, into life, not death.

But I don't roll into a future where I am convinced that 'Never Again' means us.

Unalone

We were just leaving the 'Abilities Expo' pushing up by a number of vendors. We'd had a really good time. Then out of the corner of my eye I noticed something wonderful happening. There were many vendors with vans made accessible and things to make van's accessible, Joe and I didn't spend any time there because we have no hope of ever affording something like that. But as we passed a van that had a passenger seat that lifted out and a long arm brought it out and down to the ground. We saw a young girl of about ten, with a grin that made the Cheshire Cat look depressed. Before the seat it the ground, she had already taken off her safety belt and made herself ready to transfer.

Her parents stood to the side watching. Mom had that I'm happy, I'm proud and I love you look in her eyes. Dad, embarrassed kept pushing his tears aside. The little girl didn't take her eyes off the goal. She transferred with help from her father, into the passenger seat and then was lifted up. Seconds later she was sitting in the front seat of the van.

For a moment her joyful sounds told everyone that she was happy, deeply and profoundly happy. We were by the area now but as we approached the door we could hear her again as she was being transferred out. She was having a blast.

I had seen people with all different kinds of disability talking to vendors, meeting up with each other, everyone comfortable in their own skin. Difference was valued here in ways that it isn't 'out there.' I met and spoke with at least 10 other disabled people. We didn't have long conversations about disability and the disability experience. It was like seeing something at the same time and both saying, 'That's cool shit' at the same time.

And I found something there.

But that's a story for another day.

We had fun. We learned things. But I, felt unalone ... I got what I came for.

Only One

Today I'm going to the Disability Expo here in Toronto and I'm wild excited. I am looking forward to this for a variety of reasons:

I work with people who have disabilities and I think I'm responsible for keeping up on what's out there to assist me people with mobility, with communication, with having fun. Devises themselves can have an important meaning: Wow, a devise that enables skating for people with wheelchairs to skate. Wait?? What?? Skating? Disability? WTF? Yep devises have messages.

I'm also excited because I spend most of my days being 'the only one' ... the only wheelchair user in the mall, in the grocery store, in the movie theatre, in the gym ... in the virtually everywhere. Even with the friendliness and even with a welcoming attitude, I'm still the only one.

Now I'm going to a place where there will be others, like me, rolling around, or making their way around using whatever they need for mobility or for processing the place to get around.

I won't be alone.

I won't be the only one.

So, I'm getting ready to dive into the disability gene pool for a few laps. And I can't tell you how nice that's gonna feel.

In The Pool

We went south to meet up with a friend for coffee. He goes to a gym and had suggested that we have coffee in the small coffee shop in the gym complex. I was interested to take a look at his gym to see if, like mine, they had the same range of accessible equipment. They didn't. We had our drinks, green tea for me, and chatted and laughed and caught up.

When it came time to leave,  I pushed by the swimming pool towards the door. I waited at the door for Joe to go get the car and then  I would roll down to him. It surprised me to see that the pool was taken up by a small group of people with disabilities being supported by their stafff.

There were 6 people with disabilities and 2 staff. One of the staff, a young man, was playing catch with 4 of those with disabilities, they were having fun and he clearly knew how to engage people and all were laughing and grabbing for the ball and generally doing what people do in pools. The other two with disabilities were in the hot tub. Two staff were there two, both, again, young people. Those two staff just talked to each other. It was like they were in their own little world.

The two people with disabilities, a woman beside the female staff and a man beside the male staff sat, not existing, while they laughed and talked and enjoyed each other's company. It was clear that they were busy with each other and completely unavailable to those they were with. Not once did they glance at or speak to those with them, not once did they notice the their colleague was working, having fun and communicating to each person their about their value and worth and the respect he held for them.

Outside the pool beside me sitting on a bench were two women my age. Just as Joe pulled up one of them said, "Do you think it would be safe to be in the pool with them? The one fellow seems to think so but those other two look a bit scared to even talk to them."

People watch you.

You communicate value.

You communicate respect

Or.

Not.

Really not.

Power, Disability,Sexuality: The Courage of 14 Million People

In an article on Gay Star News, one of three sites I go to for news about LGBT issues, Shannon Power wrote an article on Churches in India writing an open letter calling for the decriminalization of homosexuality. She wrote that: "The National Council of Churches in India represents about 14 million people." I know it's odd to hear of support from Churches for the inclusion and welcome of LGBT people. However, in their letter they said something that applies directly to people with intellectual disabilities who live in service systems. The beauty and power of the words had a profound effect on me.

Here's what they said: "This repressive legal code further reduces human body and sexuality into 'colonies' that can be invaded, tamed, and redeemed with the display of abusive power."

KAPOW! Doesn't that hit the mark?

This is such a description of the experience of so many people with disabilities. The tyranny and colonization of the body and sexuality, the utter control sought over the heart, mind, soul, and sexuality is clearly an abuse of power and abuse at the highest level. And this abuse is often built right into policy. The 'system' has the ability to criminalize and punish health sexual expression.

I remember a man with a disability who had been 'caught' with his boyfriend and was punished so severely that he never, ever, recovered. He thought himself dirty. He thought his desires sinful. He thought that his desire to touch was evidence of Satan in his life. No matter how much work was done, nothing could shift those views. He lives a desperately sad and lonely life.

I remember a woman with a disability who, when she was discovered in a relationship with a fellow that she'd met at the sheltered industry (as they existed back then) she was attacked and called the names expressly used against women with sexual agency, and now sees that, and this is a direct quote: Love is wrong, people hurt you for it."

I remember the guy whose mother burned his fingers on the stove to punish him for masturbation. His fear is deep and his fear is legitimate.

I know that this article was about the decriminalization of homosexuality, something that a gay man really matters to me (and it should you too if you believe in freedom and equality) but it also gives a language to what was done with our power. What was done to people with intellectual disabilities. It reminds us when we believe that service systems, or parents, or guardians, or any other person believes that they have the right of ownership over another persons body, another persons heart and another persons choices.

"This repressive legal code further reduces human body and sexuality into 'colonies' that can be invaded, tamed, and redeemed with the display of abusive power."

Demonstrate Deserving

When I first saw it I felt a twinge on sadness approaching despair. It is impossible as a Canadian not to be overwhelmed by the news flowing north of the border, it is impossible not to be shaken by what we hear and see. The most recent comments by the President of the United States of America regarding 'shithole' countries was more than appalling, it was disturbing. It also resulted in a wave of responses from those who, and it shocks me that it's not all of us, that kind of racism expressed by someone in high office, though not, as many Americans think, the leader of the free world.

One of those responses was a video wherein people from those 'shithole' countries talk about them and their accomplishments and their and their families contribution to American society. They speak with passion and with pride and with a clear message of 'we belong.' They list the successes they've had, the contributions they made and it's, in its way, moving.

But as a gay, disabled, person I worried about the message behind the message, "We're good ones!" I found that myself first as a gay man, when I would list the accomplishments of the LGBT communities and would freely list people like James Baldwin, Bayard Rustin, Oscar Wilde, Christine Jorgenson and Sally Ride. There are many many more. My message, "See these famous LGBT people? See the contributions?" Then I'd list some of my own contributions." It never worked, all I was doing was saying that we LGBT people don't naturally belong we have to demonstrate deserving to belong. We aren't just Canadians, we are people who need to prove worth.

Of course, the lesson didn't stick, when I became disabled, I began, very quickly to do the same thing. I could list all sorts of famous people with disabilities. I researched to find them and would use them in arguments with people whose 'death before disability' ideas frightened me. To that, I began to list my achievements after disability. See, I still contribute, see, I still earn a living, see, I'm still worthy.

Again I was struggling to demonstrate deserving.

Again I felt that my citizenship wasn't a given.

Again I built a ramp so I could push myself up to equality.

But I am Canadian.

Recent immigrants to Canada are Canadians, they don't need to go on television and prove themselves worthy of their citizenship.

American immigrants don't need to display accomplishments before a leader who will never see them as mattering.

What matters is that you are American.

What matters is that you are Canadian.

What matters is that bigotry is always a wrong.

And that your existence is always a right.

I am who I am and I am fully and proudly different. Bigots may lash out. The prejudiced may get in my way. But I am, with all of my difference, defiantly flying the flag of my citizenship.

I belong.

And I don't need to prove to anyone why that's true.

Gravity my PA

When we got to the center Joe parked as close to the door as possible. I got out and began to push myself up the slight hill to get to the door. I have done this for a long time and it's now a fairly easy push for me but this time I was pushing uphill, on a surface covered in slush and a ridiculous amount of salt. It was hard,  I went slowly but I made it into the building. I hadn't been bothered by offers of help because I was lucky enough to come in when there was no on else around.

A couple hours later, when we were preparing to leave, I went over to the doors to watch for Joe who was bringing the car to come get me. The parking lot was busy and there were lots of cars dropping people off so I knew that it would take some time so I sat back in my wheelchair relaxing while I was waiting.

"Excuse me, are you waiting for a ride?" came the voice of, as it turned out, a young man in his early 30s.

"Yes, I am," I said.

"Would you like me to wait with you and help you get to your car?"

"Thanks, but no, I'm good."

"I don't mind," he said a bit earnestly.

"No really, it's okay, I don't need help."

"It's no bother," he said.

I sighed, bored by a conversation I've hand thousands of time, "Look outside, it's downhill, I'm on wheels."

"But ..." he said.

I interrupted, "It's down hill, I'm on wheels, I've got gravity on my side, really, seriously, I don't need help."

He looked so disappointed, but he acknowledged my 'no.'

But I think he went away wondering why I would let gravity help me but not him.

Joe pulled up and I went through the door and rolled downhill barely needing to touch my wheels except where the salt lay in big bunches on the pavement.

Wheels.

Downhill.

Seriously.

The Intersection

In my work to develop Disability Informed Therapy, I've been looking at disability as a social phenomena. We need to understand that my physical experience of the world is different from those without disabilities, but that my social experience is equally different. These are not small differences, these are huge. Non disabled people, even those who 'had to use a wheelchair when I broke my leg' don't have even the slightest idea. Understanding that disability is more than a physical manifestation of difference is only the beginning. It's much, much, more than that.

So, I keep my eye out for studies that look at disability and the experience of disability that go far beyond ramps, accessible language and wider doors. So I came upon a study that stumbled upon the criminalization of disability. In this study they found that 43% of people with disabilities are likely to be arrested before they hit their thirties as compared to 30% of non disabled people. The rate jumps to 55% for black men with disabilities, the group most likely to face arrest, as compared with 28% of white men without disabilities.

I am not at all surprised by these numbers.

People with disabilities live in a different social world and face different dangers than do non disabled people. That's one of the first things I realized when I became disabled. I found that I felt vulnerable all the damn time. That took some getting used to and it took time to develop the skills I needed in order to reduce the feeling of being a target. Further, I found that my voice no longer mattered in the same way it did before.

In my two experiences with police and security agents, one with a security guard at an airport and one with a police officer in Toronto, I realized that I couldn't get my voice out of their perception of me as a person without significance. In both instances I feared for myself and my safety. My complaints were 'dealt' with but had no consequence.

Our challenge as adults with disabilities is to teach ourselves what we need to know, develop the skills we need to have, because no one is going to do it for us. Parents of children with disabilities need to drop the 'just like everyone else' mantra and recognize that their children have disabilities and therefore different social realities. Parents need to teach their kids about the community that they will face as disabled people, not the bright shiny welcoming community that we all want to believe in. There are dangers unique to disability, just like there are dangers unique to race, and gender, and religion. It's neglect not to teach the skills that children with disabilities need.

There is a need for overwhelming social change.

Yes.

The police who are called to the intersection of disability, race, gender, clearly see what they expect to see and hear what they expect to hear. Voices are dismissed or translated by expectation, visual perceptions of difference are coded into a combination of stereotype and prejudice. To quote from the abstract for this article: Police officers should understand how disabilities may affect compliance and other behaviors, and likewise how implicit bias and structural racism may affect reactions and actions of officers and the systems they work within in ways that create inequities.

It matters to meet that the author said 'create inequities' as it seems she is clear that when it comes to disabilities, even though we are all treated as if we are not quite really fully human, that that message is aimed at creating an inequity that doesn't exist.

So if you can create inequity it stands to reason that you can create equity.

That's our job.

Compassion Doesn't Have a Circle

Growing up, I remember an incident on the playground that involved a pratfall and, of course, the inevitable teasing. When we got back into the classroom, many were still giggling. The teacher, whose name I don't recall, directed us to silence. Then we heard a passionate speech, from the teacher, about compassion and concern for others. "Others," we were told, "included but was not limited to friends and family. Others meant everyone. EVERYONE. Compassion is without bias."

This is one of the really memorable moments of my school years. I remember it making me think. I also think this was the first time the word 'bias' entered my head in a meaningful way. This teacher and those words must have been bubbling under my consciousness the last time we went shopping because they quickly sprang to mind. A woman was pushing a stroller through a small crowd of 5 or 6 other shoppers and they moved quickly and without comment for her creating a passageway.

I know much better than to attempt the same thing so I headed around. Another wheelchair user, a woman much younger than myself got herself caught between the small crowd and a shopper behind her wanting to get past. She pushed through and I heard her "Excuse me" several times and saw the request ignored. Finally she tapped one of the shoppers on the arm and they grumbled and complained as they made space for her.

Compassion for some but not others doesn't exist.

Honouring privilege and practicing discrimination does.

The incident on the playground involved one of the classroom misfits, a group to which I belonged, and there is no question in my mind that if it happened to one of the other popular kids there would have been an approach by the other kids that involved the words, "Are you okay?" I also bet that there would have been a helpful reaction devoid of the kind of teasing that had actually happened.

Maybe I'm wrong.

But my heart, after having been schooled in living with differences, tells me that I'm probably not.

Many people feel compassionate and caring because they are there for their friends and family and they are supporting of those in their circle.

Compassion doesn't have a circle.

I learned how to add and subtract in math. But I also learned how addition and subtraction worked in the world outside the classroom window. I learned that some people have added value that leads to the privilege of expecting the best of the world. Others have their value subtracted and minimized that leads to an understanding of the world as a place without compassion and welcome.

Compassion doesn't have a circle. I need to remember that. 

For as much as some can't see it, I'm human too.

Me Matters

The turn was sharp, the passageway narrow. I was just making the turn when an man, about my age, grunted in frustration behind me. I then heard him leave, hurry around the side and enter the back entrance. There were two tables left, he took the corner table, I aimed for the one next to it. I caught his eye when he looked up at me, with annoyance in his eyes, and I said, "I'm sorry, it took me a second to make the turn. I'm sorry that I slowed you down for a moment. I'm sorry that I exist in the world and take up space in the world and that I inconvenience important people like you." I said it loud enough for everyone in the coffee shop to hear but I didn't shout, I simply spoke firmly.

He was stunned. Then he started being overtly nice. "Would this table be better for you? I could switch tables? I really don't mind." He was desperate for me to accept his charity and make it all better. "I don't need your table," I said, "I need respect as an equal human being. Respect. Not charity."

I then moved the chairs around such that my back was to him, this wasn't easy, but I was done with him and the interchange. Joe then arrived with the tea and the first thing he said was, "Why is the guy at the next table so angry." Given he asked the question, I explained loudly enough for him to hear what happened and how it pisses me off when people treat me as a thing in the way rather than a person who needs and has a right to space and time.

The fellow behind drank his coffee quickly and left quickly.

Did he learn anything? I don't care.

I did.

And sometimes me matters.

A Dangerous Thing

Joe and I are members of a 'walking club' at the mall. Our mall has two levels, and it's 1.4k to do the top and .6k to do the bottom. We joined in July of last year and have tried to get over and do the circuit a few times a month. We stopped by the customer service desk to find out what our totals were for last year. It was interesting as she went through the data, you could tell which months we traveled and which months we didn't. We were having a delightful chat with the woman at the desk when a young fellow came from outside and up to the desk to ask a quick question.

As he approached, he turned to me, and said, "You don't need to be in that wheelchair," he then shook his head and said, "you are just willing yourself to be disabled." He said it with a combination of hostility and disgust. The three women at the desk were flabbergasted. After he left I told them that this kind of thing happens every day, every time I go out in public. They were horrified.

We went back to discussing how far we'd gone. I'd done 22 kilometers and Joe 18. I know that's not a lot but there were months we traveled so much we'd only done one or two walks at the mall. But here's the thing, it isn't nothing and that's what matters. So when we were done Joe and I prepared to leave.

The woman said, "I'm sorry that happened to you."

And I swear on The Joy of Cooking I'd completely forgotten about it. It's such a commonplace experience, that I'd let it go. It wasn't even the first time that day that someone had done something to indicated that I was neither welcome or wanted in the mall. I looked at the others at the desk and they too were still horrified.

It was a good reminder.

What we get used to, what we end up putting up with, is unacceptable. It is NOT the cost of living in the community. It is NOT the natural state of being disabled, being different.

Loss of outrage is a dangerous thing.

A dangerous thing.

Summertime

On 'the lecture' that broke my career wide open and boosted my lecturing from evenings in church basements to giving presentations at conferences and seminars I ended up making an enemy. There were three of us presenting and I was to go last. We'd met a couple of times and I was finding it hard to be listened to or heard. I was used to this because, being fat, dismissal is a fairly common experience. The two other presenters had PhD's and the lead presenter was a well dressed very fit man. Even though I wasn't taken seriously I did push into their conversation to mention what the topic of my presentation would be. We had an hour and a half session and we broke it into thirds and, after that meeting, we met up again on the day of the presentation.

I had decided that I was going to try some physical comedy into the presentation, something, with my body, I'd never done. I wanted to demonstrate the many pressures on direct support professionals as part of my presentation about DSP's as partners in the clinical role. The day came and I was really nervous, I was only a couple years into lecturing and most of that was low key affairs doing parent or staff training to very small groups. This was a big conference, really, really, big. The audience would be over 100 people and I'd never spoken to that many people ever.

So, the fit guy in the suit, PhD and all, gave his presentation. It was a bit dry. The second PhD gave his presentation and he was a little more animated. Now it was my turn, I'd been sitting there through their two presentations just filling myself with anxiety and when  got up I released that energy. I did the physical thing to start, it worked, I had the audience and then I went for it. It was awesome. I wasn't thinking about anything but the material and the stories I was using and staying on track. I didn't notice until it was over and the room stood to applaud that the first speaker, was staring at me with hostility and contempt.

He accused the organizers of 'setting him up' that I had lied about my presentation. I hadn't but we didn't talk style of presentation. Then he said to the organizer, "Look at him, I expected nothing out of him. I should have been warned."

"Look at him, I expected nothing out of him."

That's an interesting sentiment. It's one that, in the world of the internet comes out really often. When Susan Boyle or Paul Potts came out to sign for the first time on their televised talent shows the audiences and judges were shocked to hear their voices because their eyes had told them that these were ridiculous people who could have no talent at all. Then they go wild at their performance more out of shock than out of approval for the song that was sung.

There is an idea that the eye can tell who is gifted with talent and intelligence and who is not. In my sector you will hear staff say, "Don't underestimate her, she's not as disabled as she looks." We have this idea that we know more than we know but let's face a fact ... the eye cannot diagnose, the eye cannot predict failure, the eye cannot determine where talent lives.

Now, to the video that I have attached to this. It is a video of an elderly, disabled, homeless man who stops to sing a song with a busker. The song was Summertime and when the mike was passed over, the man sang it beautifully and soulfully. That's what happened. but the article that was attached to it was one of those "YOU WON'T BELIEVE" kind of article's that outlines the shock people will feel at hearing him sign. Here's a direct quote from the article:

Words certainly can not do his spectacular vocals justice, you really need to listen to this to (sic) for yourself to find out, it just goes to show that sometimes, talent can be found in the most unlikely of places.

Really?

Why is it unlikely?

Because he's homeless?

Because he's a wheelchair user?

Because he's elderly?

Because he's poor?

If you think that any of these is a reason for believing this man has no talent or is not worthy of talent, you have to look at who you are and why you think the way you think. Pre-determining who you think will have talent and worth is simply prejudice. Until you can make peace with the fact that talent lies where it lies and you lose that sense of shock that something of beauty can come from anyone, anywhere, regardless of who they are, what they look like, or how others value them - you will remain, simply, another prejudiced person, ripe for articles to 'shock' you by showing you, simply what this video showed.

"Man sings Summertime."

But that wouldn't be click bait would it.

But in fact that's all the video shows.

Can't But Do

Yesterday we woke into a morning that was -38° when the wind chill was factored in. It was a day where we had planned to go to the gym and to do some other errands. We had breakfast slowly, each knowing that when it was over, it was time to go. It took force of will but we got dressed in layers and headed out to the gym.

I've mentioned before that pushing is really hard in the winter. The dust from the salt that covers the ground gets on my gloves and makes getting a grip difficult. To get to the gym I have to push uphill, over tons of salt and it's really hard. Several people offered help, and as much as I was struggling and as much as I needed the help, I said that I was OK and all but one respected my no. The last guy didn't hear no, kept saying he didn't mind, and just before he grabbed the handles on the back of the chair, I shouted, "Don't touch me." Those words sent him fleeing.

I rolled back and forth on carpet four or five times to get the bulk of the salt and grime off of my wheels and then headed to the gym. Joe, who had been parking the car, joined me there and helped me get set up. We did the Canadian Strip Tease, hat, ear muffs, gloves, scarf, coat and under-scarf and Joe put them in a locker. The guy helped me by taking the seat out of the ergometer and I got started. Joe left to go swimming.

After a little over 3k I left the ergometer and went to the cable machine. It had been busy all morning and I wanted to get my crack at it, so as soon as I was over 3k I left to grab it when it was free. I spend about 50 minutes on this machine and one of the exercises I do is to sit backwards to the machine, then grab hold of the handles and do boxing, pulling weights up as I do. I do 30 down, 30 in front and 30 up twice.

I was on the second round, sweating like a cold beer on a hot day, when a young man walked up the ramp turned the little corner where the machine was and into my view. He could see me as well, that's how it works. And he just stopped. He seemed to be watching, not staring but either way, I didn't like it. So I stopped what I was doing. I said, "Can I help you?"

That woke him up and he realized he's stopped and had intruded into my workout and he said, "Sorry, I was just ..."

"Just what?" I prompted.

"No, it's just that I was thinking that how good it was to see you out. I mean, to see someone who can't do anything, out doing things. Like I never .. Well, it's just great."

Now it was my turn to stare at him as I watched him walk away shaking his head as if he was fully baffled.

"... to see someone who can't do anything out doing things." There's one I've never heard before. I wonder if he'll ever think about what he said and realize the massive contradiction within those few words.

Yes.

I am now someone who can't do anything out doing things.

Are there cards and tee shirts for those of us who can't do but do anyway? There should be.

The Sad Pooper

Outside right now it -34°. Yes, you read that right. It's so cold that I can't push my chair in my regular gloves, I use another pair that, because of the lining inside of them, is harder to grip on my wheels. The dust from all the salt gets on my gloves and on my chair and makes them very slippery and I have to work way harder to go relatively short distances. I need more help.

I'm not going back to regular use of my power chair because, I don't want to. I have it for emergencies, or to go down and get the mail, or off to a meeting here at the co-op, But that's it. I am determined that I will be the motor that drives my life and determines my speed and destination, even if that means I need a bit more help to get to where I can easily help myself.

This is not understood very well.

Where the ground is dry, and free from snow, can be hard to spot because it's all bleached white from the salt but I've learned to see it quickly. That I can do, even though I have to use the padded gloves, even though I have to fight against the salt slipperiness of pushing. Offered help is more insistent because people see me in danger of freezing, see me moving slowly, and want me out of the cold. But I persevere and get there eventually.

Next we are promised that we are getting weather in the range of the 'sad pooper' otherwise known as -4° (take a good look at it and you'll see the sad pooper easily) and that will mean that my chair will be warmer and the air will not freeze inside my nose and that I can be outside a little longer taking less help. I'm treating it as a reminder of summer. (Only Canadians can consider the sad pooper a warm day.)

One fun thing, though, is the sound the chair makes as it goes over big chunks of salt. It's like rolling over bubble wrap. I like it when it's quiet and I can hear the wheels grinding it up. I'm trying to eat healthier and my chair is on a high salt diet. At work you can track my passageway by white lines leading in and to the elevator. You can see the turns I make in order to get out of the elevator and in through the main doors.

Now I'm being told that the 'dew point' is -30° ... I don't know what that is.

But I'm going out today -34° or not.

So I have a deeper 'do point' than Mother Nature.

And that makes me so cool, I'm cold.

I Believe in Unicorns

Image description: Poster for a Mardi Gras party, will be described in the post below.

When people do it right, they do it right.I was sent this image last night and was stunned by the overt, intentional, inclusivity. I don't see it often and may never this clear. The three people pictured,, one dressed as a unicorn, one dressed as cupid and one dressed as a feathery fairy. The unicorn isn't white. The cupid has a regular body shape, not idealized, not 'ripped', the feathered fairy is a woman sitting in a wheelchair. The back of her chair and the feathers in her hair use colours from the trans flag and the other two display the colours of the rainbow flag. The woman in the chair is holding on to the wheel indicating that she self propels and the chair is fitted to her, it isn't one of the hospital kind of chairs. The image is remarkable.

Even more remarkable is that this isn't just a good picture. At the bottom there is a whole section on Accessibility, no need to go phoning people to get information, no need of sending email after email confirming ability to enter, ability to pee, ability to get through doors. It says: Wheelchair Accessible Venue. It also states, who are these people, Auslan interpreted shows. (Auslan is an acronym of Australian Sign Language.) And finally it states that there are Gender Neutral Bathrooms.

Joe and I don't go out to dances like this but I tell you, if we could do it, we'd fly to Australia just to go. I want to be in a place where I'm told before I go that I'm welcome. I'm used to going places with the hope of welcome but with the fear of simply being tolerated. We went to a restaurant recently and were 'welcomed' with an annoyed hostess who had to move a chair for me to get into the table and apparently it was a really big deal for her and not what she was paid to do and why did I expect that level of service. I just mentioned that she and everyone else expected chairs, what's the difference with me expecting space. Yes, we stayed, yes, we were hungry and no I didn't feel like going on a hunger strike at that moment. I put up with unwelcome but was rewarded with a very, very, good veggie burger.

So advertised welcome, that's a big deal.

And admit it.

It's beautiful.

I know I know, they are all youngish, they are all fit-ish, there is other diversity missing. I know. But give me this for me - I don't see disability represented in welcoming ways, I don't see disability included as sexual adult being, I don't see disability being given space at all.

And this, as a disabled gay man, moves me.

The Word Along With A Few Others

There is a word I have never heard used outside the disability community. I haven't heard it used by service providers, or by parents, or by politicians outside here in the real world where I sit and type this. It's a shadow word that exists within and is used to describe a phenomenon known to every disabled person alive. It's a word that we use to telegraph to one another an understanding and a sense of community. It's gives voice to our reality.

And I've never heard it spoken.

Or used in a sentence that wasn't typed.

I've read it. I've said it myself and have experienced the uncomfortable nods of those listening. It's like using a word that asks people to believe in a phenomenon that they dismiss and excuse. The few outsiders that know the word, often suggest that it comes out of a false sense of reality which arises from disabled people playing victim.

The word?

Ableism

or

Disphobia. Another word that I particularly like.

I've heard thousands of keynote speeches at conferences about disability from non-disabled experts, and I've never heard the word.

I've been at hundreds of meetings where the issue of neighbours not wanting disabled people to live next door and I've never heard the word.

I've been at countless meetings about people with disabilities being bullied and teased and socially brutalized and I've never heard the word.

Unless I say it.

The typical response is a brief, annoyed, nod and then a let's move on to the problem of winning over the hearts and minds of others.

You know another word I never hear?

Bigots.

Neighbours who don't want neighbours, people who bully others because of who they are, people who target for exploitation others based on an aspect of their being, are all seen not as bigots but as people who need education.

I hear the word education a lot.

I hear the assumption is that people with disabilities are so damn different that it's understandable that they would be treated horribly by those untrained in recognizing human characteristics in the different. They have the ready excuse, "I'm sorry I beat that disabled dude to death, but you see, I haven't been trained."

Ableism.

Disphobia.

Bigots.

Bigotry.

Those are the words we need to use. We need to push at the boundary created by the screen in front of us. The word must leave the tips of the fingers used to type them and enter into our vocabulary of spoken words. We need to write letters, makes statements that call out ableism. We need to chastize new reports that cover crimes and abuse of people with disabilities when they don't recognize what they are covering, when the don't use the vocabulary of our oppression.

I want to hear that word and those words used this year.

In a news report.

Spoken out loud.

I want the experience that we have as disabled people to enter into the vocabulary of those who are paid to support us, those that are paid to report the news, those that document our lives, those that stand at the podium and speak about our lives.

I know that we all use it.

I know that we all say it.

But it's time to get the word, and those words, out of our circle and into active circulation.

 Together we can do this.

Anecdotalize

I've been thinking a lot about the post I wrote on New Year's Eve about an event that happened years ago when a woman was purposefully and needless cruel to me, and whose apology I spurned that night. I've read all the comments on this blog and I've had several discussions about it with others. After all that, I decided that I wrote the wrong blog to make the wrong point.

Most everyone responded to the fact that she had been cruel and that if I had accepted her apology that night, she would learn nothing from the interchange. At the time, I felt exactly the same way. I wanted her to have something to reflect on, something that might give her a shove towards change. Even so, I'm left with me, not her, I'm left with me and my anger and my hurt and my steadfast refusal to accept her apology. She may have learned something about herself, but, then, I learned something about myself as well.

Kindness is easy when people 'deserve' it.

But here's the thing.

It's not my job to be an object lesson for others.

It's not my responsibility for someone else's growth.

It's not life's work to edify anyone.

Without wanting to sound selfish, shouldn't I be able to simply live my life for me, not the inspiration or education of others?

Shouldn't I be able to take the easy way out of situations so that I don't end up bruised, so that my soul doesn't grow a hard shell?

Why is she more important in that situation than me? Why is her edification more important than the way I will feel about this the next day and, obviously, years later?

Disabled people don't exist solely for the betterment of humankind, no matter what Tiny Tim said. Disabled people need to grab onto their our lives and live them defiantly. We need to take care of ourselves as we interact with those who would use us, those would would anecdotalize their interactions with us, those who would take from us will still thinking us beggars. We have stories too.

Stories that visit us at night, stories that always end up being about someone else rather than ourselves. It's hard, even for me, a storyteller, to place disability at the center of the stage, rather than something that is acted upon, responded to or drained of personal colour.

Forgive me.

Disabled stories matter.

Disabled lives need to be lived in such a way that we are each the protagonist in our own lives. That is a much harder task than you might think.

Fireworks

There were all sorts of warnings about the bitter cold that grips Newmarket so we bundled up warmly when we went out to the First Night party being held in a sports complex near us. We were to meet Marissa and the girls there. We were able, much to our shock to get really good parking because the disabled spots were virtually empty. I rolled in while Joe got our stuff out of the car.

People were flowing in through the door and when there was a break in the stream, I moved in and finally got into the warmth. My hands were burning from the cold. My wheelchair had only been in the trunk for less than 10 minutes but it was colder than ice and my gloved simply didn't protect me from the cold. But I was in and seconds later Joe joined me. 

Marissa called and said that she was having trouble finding parking but would be there soon. We took that time to check the place out and see what was there. A fellow in a wheelchair with a 'STAFF' shirt was sitting near the top of the stairs and giving people information. We lined up and when we got to him, I began asking about the various activities, like the bouncy castle kingdom that had been set up on the skating rink below. I'd seen that they'd covered the ice with wood but would I be able to get up an on to the ice. He explained what they had done to make it and other activities accessible. In short, there were no areas of the center that I would not be able to enter and be with everyone else. A good start.

We met up with the girls and their mom and the evening began. We went from room to room, mostly us adults watching the kids do their stuff and have fun. They were all over that joint and they bouncy castled for well over an hour. Then we went up to where a live band was playing and they danced and mimed and tried successfully to make us all laugh. 

We had a good time.

And.

Nothing happened. In a crowded building, I navigated through the crowds easily because people made space for me. No one paid very much attention to me at all. It was like they were so focused on their own evenings and their own good times that they simply left me alone. No weird comments. No inappropriate friendliness. No insistent offers to help. None of it.

It was one of the few times that, in a crowd of people, I began to relax. 

This is what I want more of - people who are interested enough in their own lives that they aren't compelled to enter into mine. I want more time in public space feeling if not safe, safe enough. Difference only attracts attention when it makes an unduly extraordinary impact on people who need something from it. Last night they needed something from the evening, not me. And what a relief that was.

We drove home after the fireworks, which we were able to watch from the car, sitting in warmth and having an excellent view.

And they were the only fireworks that happened, no social fireworks went off, even in a crowded space, even with my difference fully on display.

It was a great way to bring last year to a close.