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.