Sunday, February 24, 2019

Oh Well

The noise caught her attention first. She wasn't startled by it, not at all, but it did call for her to look over towards the door. We were entering the mall through a different entrance than we normally use. As we went through the  center set of doors, I made the comment that every entrance should have electronic doors. Joe said, "Oh, this one has it too," and went over to push a button on the big door to our right.

And then all hell broke loose.

There was an explosion of sound.

Gears grinding. Metal popping. Blasts and banging.

The door didn't open at the end of all that.

We were stopped still, afraid that something was going to explode out of the machinery. Seriously, it sounded dangerous. It stopped. Joe looked at me and said, "I think we'll use this door, and we went through.  As we did so the staff who had initially had her attention pulled by the sound was long gone.

Only later did I realize that her boredom, after her initial attention, wasn't just about her job but about the situation as well. She had known the door didn't work, had heard the sounds before, and they were meaningless to her.

That's a big part of the problem that we have as disabled people. The issues that have a dramatic impact on our lives are meaningless to those without disabilities.

Who cares that the door doesn't open when I can easily open and enter myself?

Who cares if the cut curbs are in bad repair when I can easily step over rough patches of pavement?

Who cares if the options are reduced for disabled people when they are never reduced for me?

The things that impact our lives as disabled people seem frivolous to the point of meaninglessness. No one in that store has done anything about the door, and they probably all know about it. There is no sign of intervention. No sign of repairs under way. No suggestion that other doors be used. Nothing.

That's left to me.

That's left to some other disabled person.

That's left to some family member or support person who needs the door to assist with entry for their child or the person they serve.

It's already work enough to be different in a world built for exclusion. A world where the word 'modifications' means that a gift has been given, that the 'typical' has been 'adapted.' Shouldn't access be the norm rather than result from the norm being modified?

Oh, well.

I'll call on Monday.

Saturday, February 23, 2019

And I Wonder

We were waiting to go into a clinic where I've gotten an appointment to see a nurse. There are a number of people waiting and we'd had a difficult time finding a place for me to park my chair. I'm very wary of 'sticking out' or 'being in people's way,' so Joe and I have to move a chair out for me to get in, sounds simple, often isn't. But I'm there. Waiting.

A fellow comes in, like me a wheelchair user. He has no difficulty in sticking out and just backs up against an existing chair. He is a talker and he starts to chat with Joe who is sitting right beside me. I make a few attempts to join into a conversation that I found interesting and was firmly rebuffed. Nothing was said but it was as if I was nothing and nowhere and he wouldn't even look at me. Not a glance.

He talks about his wife and then describes the accident which led to him becoming a wheelchair user and they talk. I give up, pull out my phone, and start to play the game I've just downloaded and am fascinated with. I get it. I'm not wanted in the conversation.

And I wonder.

Why do we do that? Why do we do to each other what other people do to us? Why do we take the worst of how we are treated and instead of rejecting it instead of fighting against it, why do we do that to each other?

I am on line. A woman with a disability has just written a post about something related to her disability and her experience. She never claimed that what she was saying applied to anyone but herself. Her post described her lived experience and then outlined what she took from that experience. It was a good post.

But then, in the comments, oh my. People were out for blood. They attacked her. They accused her of her experience not being real. They accused her of taking the wrong things from her own story. They said that her reality wasn't their reality. They accused her of trying to speak for others. It was cruel. There was a level of meanness as people jockeyed for top spot on the heap. What's up? This is us!

The next day she had deleted her post.

She had been silenced.

The people commenting were also, primarily, women with disabilities. A few men thrown in there as well, and while some thanked her for her honesty and insight. The attackers outnumbered them at least 4 ro 1.

And I wonder.

Why do we do that? Why do we, who have been silenced, we whose voices have often not been heard, strike down one of our own and disallow her from speaking her own truth, her own reality and call into question her own ability to learn from her life. This is us!

A boy with an intellectual and physical disability sits listless in his chair. It's a bright green chair and he's wearing a striped tee shirt of a matching colour. He is maybe 6. He looks bored. He looks lost. He looks alone. He sees me rolling towards him and his had lifts and waves, there is a brief smile. I wave back. He is with his parents. His mother and father are behind him. They have stopped to talk with another couple. Their conversation swirls over his head and to the back of him. Even if he twisted he would not have been able to see what was going on.

I push by. They are talking about inclusion! They are talking about how the school board does a terrible job with inclusion. They talk about how their son is rarely really included. They do this behind his wheelchair, out of his sight, they leave him alone and lonely on the edge of the group, looking out.

And I wonder.

Why do we do that? Why do we fight for an inclusion that we don't practice ourselves? Why do we developing ideas and ideologies about disability and see them as things that others should do? Why do we so easily leave out those who we love the most? Come on. This is us!

This is us.

THIS IS US!

and we know better

Friday, February 22, 2019

All of Us: A Gay Man's Response to Jussie Smollett

I do not apologize for believing Jussie Smollett.

There is a growing chorus of people who, delighted at the idea that his beating and abuse was faked, are taking control of the discussion of racism and homophobia. They feel they are in the driver's seat now, as if they haven't always been, and are making it clear that claims of institutional and confrontative  prejudice doesn't exist, or if it does, it's minor and even then, exaggerated.

They laugh at those of us who had hearts that hurt at hearing Mr. Smollett's story. The talk about 'confirmation bias' as if we are always sniffing around looking behind shrubs and trees to find the rare and brittle branches of bigotry. While they exult in this moment I wonder if any of them will wonder why I believed Jessie Smollett.

If we were so easily tricked, why would that be? We are people who hang up the phone when robocalls warn that the police will come if we don't pay up on fictitious taxes. We are people who know better when fast talking cons try to sell us our own shortcomings. If we were tricked why were we tricked.

"Because you want to believe in racism and homophobia so badly that anything that confirms your world view you scoop up like baked brie!" is the suggestion.

Racism.

Homophobia.

Those aren't things I believe in. Those aren't abstract unproven hypotheses. They are concrete and deeply embedded historical realities.

Why would I believe Jussie Smollett?

Why would I believe that 'outrageous' story?

Because I've lived it.

Not all of it.

I am a white, gay, disabled man.

I only speak to what I know. Homophobia exists.

I shook hands with prejudice a long time ago. I grew up and before I knew who I was I knew who I was was wrong. Do you realize that people have to come out because they've been locked in? We hear the words said around us. "Fag!" "Sissy!" "Gearbox!" "Pansy!" We hear them as children and innately we know what those words mean, and we know that we need to find a shady spot to hide ourselves in. Shame makes a good blanket under which we hurt ourselves. We are our own first bullies. We are intimately connected with violence. We use it to punish our difference.

Leaving 'Buddies' a bar in Toronto years ago required walking a few steps down an alley. It was terrifying to enter and terrifying to leave. People were beaten around there. People were hospitalized around there. And no one told. Silence was the only option when discovery would cost jobs, and family, and even lives.

It wasn't hard for me to believe Jussie.

Marching in an early pride parade, long before corporate sponsors, long before pride was a product, Joe and I walked side by side. A rock is picked up. It whizzes by my face and hits Joe on the shoulder. No damage was done, except it's odd that its that same shoulder that Joe has trouble with to this very day.

It wasn't hard for me to believe Jussie.

Crossing the English channel in the Volkswagen beetle we meet a young black woman. She is bright and funny and told one helluva story. When the boat docked we invited her to ride with us to London, she took us up on the offer. We talked and laughed on the drive. We watched night fall and when we arrived in London we started looking for places to stay. We had some sort of student guide to where travelers could get good rooms cheaply.

When Joe and I went into get us a room, we mentioned that we were traveling with a woman who also needed a room. Rooms were available, the price was right, and we were signing the register when she came into the lobby. Suddenly there were no rooms. They made it clear that they hadn't realized that she was, 'you know.' This happened at every stop. At one point, three refusals later, she became really upset and yelled at the manager. Called him a racist pig. He, in turn, called the police. They arrived instantly, the colour of her skin being a magnifier of the concern. The hotel guy over described what happened, said that he wasn't racist but what was he to do - being the manager of a place with disappearing rooms, it's just so hard.

We were brought to the police station.

We were let go.

She was held.

We didn't get a room for that night. We parked outside the station and waited til morning. She was let out. She looked like a different woman. She looked defeated.

We drove her in silence to where she was to catch a train.

Said goodbye.

And she was gone.

It wasn't hard for me to believe Jussie.

I don't apologize for believing a story I've heard before, a story I've lived before.

I have no claims to understanding the experience of racism, I have observed it, I know it's real, but that is not my story to tell or the pulpit on which I choose to stand.

I do have claims to understanding the experience of homophobia, heterosexism, disphobia, and ableism. I get those.

I don't believe in them.

They are facts.

And until they are not facts.

I will always give my heart out to those who have the courage to speak.

I don't care what happens next.

Cause this isn't about Jussie.

It's about us.

All of us.


Thursday, February 21, 2019

The Power of Fact

Some think that researchers are people who sit behind computers and dream up studies of little consequence. We have come to be a society that has discarded facts and lionized opinion. But research can do something magical with their statistical wizardry if it asks important questions. Questions that have the potential for real life impact. As such is a recent study done by H-CARDD  (Health Care Access Research and Developmental Disabilities) here in Toronto. Here is an infographic from their latest research:

 

 I just wrote the team there and this is what I said to them. (I hope they don't mind.)


Hi, could you please pass along to the H-CARDD team my thanks and my congratulations.

Congratulations for completing and publishing this report.

My thanks, both as a professional and as a disabled person, for doing radical research that ‘speaks truth to power’ … you are constantly creating facts in an arena where opinions and anecdotes used to reign. Because of your work people in general, but most importantly, people in power can’t ‘not know’ this. It matters. It shows that the lives of people with intellectual disabilities are on the line. It affirms the idea of both ableism and disphobia as a constant theme and a constant threat in the lives of people with disabilities.

I am in awe of your commitment and your courage.


Now the opinions in the letter are mine and the reading of the report is filtered through my understanding of the world. But this is what I took from reading the report.

Research like this gives us ammunition with which to clearly state our case when we want to advocate or inform or make policy. It allows us to confirm what we've seen as a real phenomenon.

I invite you to read the whole report which you can link to from the one I've provided.

Take the time.

Become informed.

It matters.






Wednesday, February 20, 2019

The Ramp and The Woman In The Cobalt Blue Sweater

It was hard going.

I was pushing uphill, on carpet, and was working very hard. I could feel my muscles burning, I could feel forward motion. "This is what it's all for," I thought, as I crept slowly towards the top of the long ramp. The hours in the gym, the hours with dumbbells at home, the aerobic exercises I follow along with on-line, all of it, it's for this. I don't mind that I'm struggling. I don't mind the challenge, As long as I'm moving forward.

She was wearing blue. A nice cobalt blue sweater. That's what I remember seeing first. She had been standing near the top of the ramp speaking to a friend. I know they noticed me. I could see them react to the sight of me coming slowly up the ramp, I could see them pause and decide what to do, I could see them relax into the idea that doing nothing was probably the best option. I also knew that if I had asked them, they would have been there in a shot. But I didn't. I didn't want their help. I appreciated their decision to simply let me do what I was doing. Being disabled means gratitude when people don't take an interest in you.

The ramp was long. It was carpeted. The carpet was plush. My shoulders were burning, my breath was coming short, I was tiring. I was only a few feet away from the top. I don't know why but with every long ramp I've ever gone up, it seems like the last few feet are at a steeper grade. I stop for a second to catch my breath. I look at how much of the ramp is left and I begin to feel defeated. Will I need to ask for help.

In my pause, the woman in the blue sweater finished her conversation with her friend and started towards me. "No!" I thought, but did not say, but my hands tightened around my wheels. I would not be pushed. I would not have this taken from me. I wanted to finish. I prepared for the confrontation between interference and independence.

But, in the end, I took her help.

In the end, I was grateful for it.

Because what she did, for me in that moment, mattered.

She got close to me, leaned down and whispered, "You got this!" Then she turned and left.

And I realized that I did, I did have it in me to finish.

I began pushing again, harder, like my muscles had fed on the encouragement. And I made it to the top.

Yes, the hours in the gym paid off. Yes, the hours of time at home on the wheelchair treadmill paid off. Yes, my dedication to making myself stronger paid off.

But a word of encouragement.

That's the kind of help I really need from time to time.

I have learned from this. Sometimes the only help people need is our belief in their ability to do it on their own. Sometimes the only help people need is room to succeed. Sometimes, not always, but sometimes. In our busy lives we can forget to give what's needed and simply take other's victories from them as if they were unnecessary bother.

"You got this," she said.

And I did get it, in every possible way.

Saturday, February 16, 2019

I'm Good With That

It lay there on the floor.

I was standing. I can stand. I can walk a bit. But I have to have something to steady me, a wall, a railing, and arm or shoulder. I had put my clothing in the laundry hamper and a receipt had fallen out of my pants pocket. It lay there, on the floor, looking like it needed to be picked up and put away.

I stood there and looked at it.

It's only been in recent months that I can reach down and pick something off the floor. I still have to be careful because of balance, but mostly, I can do it.

But I haven't had to do it for a very long time simply because I couldn't do it. In fact for nearly 13 years the floor and I have only had passing acquaintance. I could wave to it, to no effect because it never waved back, but that was it.

For years and years and years, I would simply let Joe know it was there and eventually, usually sooner than later, he'd pick it up and deal with it. He never minded, he was good with helping me where I needed help.

It's a complex thing being disabled. Because though I thought I wanted the skill of bending over and picking up things I'd dropped. It was really easy to simply let Joe do it. And 'easy' is something I can get used to.

I had a decision to make, pick it up, or leave it for Joe. If I didn't pick it up, he would never know that this was now about my laziness turning his help into servitude. He'd never know. But, shit, I would know.

I picked it up.

I'm no hero here, the reason I'm telling you isn't to point out how I made the right decision and Joe's day was lightened by a tiny little bit.

No.

I'm wondering if it happens with disability that habit destroys motivation. If it's just a habit that you help me with my shoes, then why would I be motivated to use the skill once I'd learned it. It's easy to live the easy life.

I remember working in a school tying the laces on the shoes of a little boy who simply let me do it. It wasn't until another staff told me he could do it that I realized that he had tricked me by my own need to be helpful and my own stereotype of what I thought he could do.

Teaching a skill and then giving the privilege of using it.

Discovering one's own personal power.

That's cool.

Very cool.

Joe won't know until he reads this that I had that little debate but I know when he does, I'll be picking shit off the floor for the rest of my life!

And ... I'm good with that.

Friday, February 15, 2019

One Word

There are times when powerlessness is the only sensible reaction.

Joe and I were watching a television program and just as it ended, building up to an emotional climax, one of the characters uses the 'R-word.' 

It's like a sucker punch, the whole of the ending is thrown off, our understanding of the characters involved is knocked off course, the time we've enjoyed watching the show is now thrown into question.

Powerlessness.

Nothing I can do will ever fix this.

We are left sitting feeling like we've been slapped by our own trust, the trust we'd given to the writers of the program.

Breathlessness. 

I'm told that I'm too sensitive in my reaction to that word.

I don't understand why I'm expected to be able to let purposeful hurt, purposeful hatred, roll off me.

And I don't know what to do.

 I know people who can be brought low by that word, can be torn up by that word, can be left bleeding by that word.

I know that their pain is real.

I know that their tears are wet.

And I don't know what to do.

I watch people forced to apologize for the language they use because the language they use is hateful.

But disabled people are expected to expect pain.

It's their just reward.

We have people sign pledges, but only good people who already know sign pledges, we need something bigger and louder and stronger.

But I don't know what that is.

This is a ramble.

And I'm sorry.

But sometimes I'm unguarded and sometimes I trust and sometimes I'm stunned by how quickly one word changes everything about a moment.

One word.

One powerful word, so powerful that it drinks up the power from all those who hear it.

So.

What do I do?

Talk to you.

Thanks.