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.

Thursday, February 14, 2019

This Post Is Not About The Gym

Yesterday I gave my first lecture of 2019. I've had a long time off from travel, and even this was just an hour and bit away, it still counts. Hotel rooms, supper via delivery guy, room full of people looking at me. The longer I take off from lecturing, and this was the longest time ever, the more nervous I get about the whole thing. But I arrived at the hall, was greeted warmly on a really cold day, and as the hall filled I went about my rituals for calming down and right at the right moment I popped my anti-anxiety.

The audience was receptive and as I got going I realized, again, that I was enjoying being there, enjoying teaching, enjoying the questions that came my way. In a blink of an eye, it was lunch time.After Joe and I had eaten I said to him that I'd like to go to see the gym in the community center that we were in. We headed off and up and arrived there to look around.

It was packed with machinery and I rolled around looking at it. My own gym was having members fill out a form suggesting new machinery or other ways to improve the experience. They had come to me and told me about it in case I knew of other machines that had been made accessible. I thought I might get an idea. There wasn't any, not one, and I was surprised. I spoke to the guy there and asked if this was a city run gym in a community center or if it was like a Planet Fitness or something. He said it was run by the city.

I asked him, then, where the accessible machines were. He said they had one where the seat could be pulled out. It was over near a corner and though it was cool it was hardly enough for someone with a disability to bother. I asked him why there weren't options for people with disabilities, in a taxpayer funded place shouldn't all taxpayers have access.

Now, for those who wish I'd shut up about the gym and going to the gym, here's where the switch happens. The post isn't about the gym but about what he said in response to my question. So what did he say in answer to my question about why there weren't options for disabled people? In a firm tone, "This gym is for the general public."

I stopped still.

He looked back to see me no longer behind him in chatting distance.

"I am a member of the general public," I said.

He looked confused and started talking to me about some other place with the word 'ability' in it's name where I might be able to go.

What part of Community in 'Community Center' did he not understand? 

But, I had to get back and go on with my lecture.

He had flat out told me that  I don't belong, I am not welcome, I am not one of 'us' ... I am not part of the general public. I am something else that should go somewhere else.

Sometimes ableism and disphobia is so deeply ingrained that people don't even understand the impact of their words. They don't even understand the depth of their prejudice. The can say clearly, 'not you, not here' and still think they offer service to the general public.

There is work to be done.

So much work to be done.

Tuesday, February 12, 2019

Accessibility ...

Accessibility is Attitude because Attitude leads to Action because Action conquers Architecture.

Did I mention that I love alliteration?

Actually, I'm not at all trying to be cute. I believe every word of that sentence. Access comes from an attitude that believes that people with disabilities have a right to exist in all spaces and participate in any activity of their choosing. Existing in all spaces is still a wild dream for many of us with physical disabilities.

But this morning I was remembering how terrified that I was when I heard that my doctor's clinic was moving to a new building. I went and looked at the building and saw that it had one step up into the lobby. One step that left me sitting, outside, in my wheelchair. I liked my doctor, I liked feeling safe receiving healthcare, where was I going to find that again. When I mentioned the step to my doctor he simply said, "We haven't moved yet, and yes, you will continue to have access." I shouldn't have worried, I shouldn't have had to worry though either, but in truth I do, we all do, those of us who need adaptations.

A restaurant in Toronto, at it's own expense, builds an elaborate ramp so that disabled people can come up and enter the front door. They wanted to. They did. Sadly the restaurant lasted only a couple of years, but here's the thing. As soon as they moved, the ramp was taken down. The new place didn't think that we were a necessary part of the community and they showed it. In a museum about prejudice they show signs that deny entry to various racial and religious groups. It's a powerful reminder about attitude and access. But I suggest they need to put up at least one picture of a building with a single step in and see if visitors can guess what this image means. My guess is they won't. My guess is that few people even noticed that the ramp was gone. Except us, of course.

So if attitude can conquer architecture, why is it so difficult for it to create welcome. Getting in simply isn't enough. Once in can we expect that welcome naturally awaits. No, because attitudes also creates barriers. They can take space that is accessible and make it not so. At a whim. Without thought, they say, but they're lying. There is always intent when a table moves that blocks access to disabled people. Always.

I am writing this because I went into a store yesterday that is normally quite accessible and I was unable to get into the store because of how they had arranged items for a big 'sale'. I spoke to a manager who refused to see my point and then when she did, I was persistent, diminished it, "It's only for a couple of days."

Of course.

I'm sorry.

Was the response I didn't give.

I am writing this because I went into a clinic for an appointment yesterday. I was treated as a bother. I've never gone into a medical clinic where there was a space left open for a wheelchair user to park a chair. This place was overflowing with chairs, put there for those without the foresight to bring their own. I was a 'bother' ... chairs had to be moved, space had to be made, it was, for a moment like theatre as they acted out their annoyance to a group of people who seemed to agree, by their silent consent, that I didn't belong in that space.

Of course.

I'm sorry.

Was the response I didn't give.

Attitude can defeat architecture but it also can create barriers not built but that are built, brick by brick, out of privilege and prejudice.


Monday, February 11, 2019

Fear and Loathing

Acting scary and being scary are very different things. I noted this the other day when Joe and I went out for lunch. We'd finished our meal and decided to stroll around the mall window shopping, otherwise being described as 'between paydays'. I noticed a young woman of maybe about 14 sitting on a bench, rocking, flapping her arms, and making what I would describe as happy sounds. She seemed overwhelmed by happiness. A woman stood beside her, not in the least trying to stop her, but she was smiling broadly too.

Now, let me tell you what brought this little scene to my attention. It was the looks of horror and fear on the faces of others who rushed by them, as if they fled contagion. They feared her. I have always liked the term 'disphobia' because I think we, as a community, have never really addressed the deep fear and loathing that disability generates in a remarkably high number of alt-normal community members. This word says that much more profoundly that ableism in my mind.

Her presence, her manner, her sounds, her public presentation was evaluated through a lens of panic at who she was and what she represented and what they feared for themselves or their family.

People were afraid.

Later.

We stop at the food court for a cup of tea. His black, mine green.

At a table, two down, and three to the right. Sits a young teen woman, interestingly about the same age as the woman instilling fear into those who receive it openly. She is alone. She is pretty. She is quietly eating a burger.

No one fears her.

But, yet, moments ago she said something unbearably cruel to a girl who had been sitting with her. She said it loudly. She said it intending to be heard. The other girl fled the table in tears. I don't know where she went. She didn't come back.

Sometimes acting scary and being scary are very different things.

Sometimes acting scary is really just acting differently, and it's difference that's scary.

Disphobia, the weight of prejudice ladened by fear and loathing behind the word, is dangerous - they would have wished her away.

And scary people, those, most often, get a free ride.

Sunday, February 10, 2019

Ruby's Smile

The girls are staying with us this weekend. We have a routine we all like. It starts with Saturday morning hoping in the car and heading over to the center where I go to the gym and Joe and the Ruby and Sadie go to the pool. We're there for 2 hours. When we're done we go do something - movies, mall, games. This weekend we headed over to the community center near by us. They were having an after noon of making Valentine's crafts. We thought we'd pop in and see what was going on. We ended up staying right until they were cleaning up!

First up cards were made. I made Joe the first Valentine's card of our 50 years together. It would take too much explaining to go into why we don't celebrate Valentines so let's not go there. But we are firm believers that the girls get to make their own decisions about these things, there has to be room for their opinions and perceptions. Sometimes we just shut up. I admit, however, having fun making the card and watching the girls go at their crafts with abandon.

One of the activities was decorating cookies. The two choices were heart cookies or bear cookies. Ruby worked really hard on her cookies, making a cookie each for Joe and I and then for her mom and then finally for herself. Hers was a bear cookie. When it was done she brought it over to me and showed it to me. It was really well decorated, wearing pink overalls and heart shoes.

The first bite.

She looks at the bear and then me and said, "Ooops, now he'll need crutches."

The second bite.

"Now he's going to need a wheelchair. He can use a manual chair like yours."

The third bite.

"There can be a colostomy bag put in here," she points with a grin.

The fourth and fifth and sixth bite.

"He'll need a wheelchair like in 'the Upside,' that he can drive with his chin or," she thought, "he could have prosthetics."

The sixth bite.

"He's just a head now but he can tell whoever is pushing him where he wants to go."

The last bite.

"Bye bear."

I listened with fascination. She just kept coming up with the adaptations the bear would need after each bite. I was totally impressed with the range of her knowledge of what kinds of things people with disabilities need in order to continue to go about their business. Taken to the ridiculous, of course, she was playing around. But she was playing with knowledge of the subject. She never missed a beat in determining something that could be used or done for bear to slay mobile.

When she was done, I got naughty.

I said to her when she was done, "You know what that bear is going to say in about an hour and a half?"

She looked at me with that pre-teen look that said, go ahead but I know it's gonna be a groaner.

"What a poopy day I've had," I said and laughed. Because I never matured in that area and still find poop and fart humour hilarious.

She won't admit to it I'm sure.

But she did smile.

Saturday, February 09, 2019

Meaning? A story in which there is yelling

What does disability mean?

Sometimes nothing, nothing at all.

I think this may be the most surprising aspect of the disability experience. Sometimes it means something. Sometimes it doesn't. 

We went to the mall for lunch the other day. We like food courts. This court has tables designated for disabled patrons, they are a little taller so those using mobility devices and fit comfortably under them. 

When sitting at the table, having lunch, my knees well tucked away under the table I don't experience my disability at all.

Not. A. Bit.

I don't think, during those moments of my personal disability, I'm just eating and chatting and enjoying the 'je ne sais quoi' of the place.

But sometimes disability means a lot.

Like when we go to the mall and those table are taken, even though the disability symbol is right on the top, by other people, non-disabled people, who seem oblivious to the obvious sign on the table. They see us, with me in the wheelchair looking suspiciously like the symbol on the table. Well, a little more rounded than that person perhaps. And they don't move. Empty tables everywhere and they don't move.

Then, I feel disabled.

I can eat at the other tables but my chair doesn't fit comfortably under them so I have to sit all askew.

I feel disabled all through lunch.

Why don't I just ask them to move?

BECAUSE I'M OUT FOR LUNCH NOT FOR A FIGHT, NOT FOR THE EDUCATION OF OTHERS, AND I AM SURE AS HELL NOT THERE TO ADVANCE THE CAUSE ... I just want a crape!

Last week we were there and those tables were full and we began searching for a place that I could get to, which was hard because many were in the middle which meant wending around people and packages. One of the staff hired to clean up after everyone saw us looking. She stormed over to me, "You want a table?" she said without waiting for an answer, "follow me."

We did as we were told and when she got to the table she said, "So, all of you, look here!" she said loudly while pointing to the wheelchair symbol. It means "Get your privileged asses out of these chairs so the people that need them can use them. And DON'T YOU LET ME SEE YOU SITTING HERE AGAIN!"

We had lunch.

She was one of the best doctors I've ever had.

I didn't feel disabled any more. 


Thursday, February 07, 2019

Floored

So now that I'm a gym bunny, I've taken to writing down weights and reps so that I can keep track and push myself. It turned out that I had been going every week and doing the same thing thinking it was more. So writing it down helps. Today at the gym something very funny happened. I pulled the book with pen attached out of my wheelchair bag and in doing so dropped the pen to the ground. "Oh, shit," I thought, "I really want to record what I'm doing." I searched for another pen in my bag but it was a fruitless endeavour. I rolled back until I could see the pen. I turned the chair so I was beside the pen.

Now.

I have never been able, since I started using the wheelchair, been able to bend over sideways and touch the floor. I'd never even actually gotten close to the floor. But I leaned and as I did so I saw about 8 people in the gym come to a full stop. It was like they were frozen in time and space as their eyes were glued to my hand as I reached down. The further I went down I could feel them willing me to get the pen while fighting their own desire to run over and pick it up for me.

There was a gasp.

My fingers brushed the top of the pen and for a second we all thought, as we were all of one mind now, that I'd gotten it. But it rolled away from me a bit.

I leaned over further my fingers stretching to their fullest length and I managed to roll the pen back.

They were still with me, all of them and a couple more who stopped to see what they were looking at and then decided to stay. I don't normally like being watched but I didn't find their eyes intrusive, this was a gym, they all know about pushing to reach goals.

My goal was just a pen on the floor.

But it was goal enough.

For everyone.

Then, pen in place I leaned over, I could feel the stretch, my muscles moving, and I caught the pen between my forefinger and middle finger. I had it. I lifted it up. And it was over.

This all took only seconds but it felt like a long time.

But I have to say I admire those who were their, I could feel them silently cheering me on.

But what I admire more was the incredible resistance they showed. They held themselves back from helping. They exercised restraint, a muscle not so often used these days.

Everyone was all smiles after it was all over.

They wished me well.

And they showed it.

By letting me do well.

Wednesday, January 23, 2019

Calling To Random Strangers

Coming out of the theatre with Ruby and Sadie after seeing the movie "The Upside," we made our way down the ramp and into the long hallway to the lobby. We were playing in theatre furthest from the lobby which meant two things. Carpet and it was closest to the accessible loo.  Sadie was ahead of me, Ruby was beside me on one side and Joe on the other. I called, not loudly, to Sadie and asked her to hit the accessible door button. I did this for two reasons. It would make my entrance easier and find me a child that doesn't like to push buttons, of either kind.

As soon as my request was out of my mouth, the trajectory of 4 or 5 people's journey towards the lobby shifted significantly as the moved towards the button on the wall. Now I hadn't shouted a general request for help or assistance. I had asked Sadie, by name, to push the button. I wanted to stem this tidal wave of helpers so I did call out loudly, "No! No thanks, I was asking Sadie," who everyone would have seen as she was, ever competitive, heading with determination to get their first, towards the button.

That stopped all of them.

But one.

She kept going and it was clear that she was going to race a child.

"No! Please!" I called again.

"I don't mind," she said as if the fact that I do doesn't come into it.

"But you aren't family, she is, I asked her," I said.

She stopped and looked and saw that I wasn't alone, as was her assumption, and I suppose the assumption of everyone who had gone to help.

We lead surprising lives, we disabled people.

But one of those surprises shouldn't be, we don't call out for help with any part of the toileting process to random, passing strangers.

Surprising, indeed.


Tuesday, January 22, 2019

Teach Them Well

We pulled up to an elevator where a family with a baby carriage was also waiting. We were all chatting about the -21C temperature and trying to find ways to describe it. The elevator door opened and we all waited for the family to take it up. It's not a large one so we knew we'd be on the next one. However when the husband got on he maneuvered the carriage over and then I was invited to pull in beside them. The wive and son, who would have been about 4, said that they would take the stairs. At first I politely refused but they were insistent, so I got on and Joe and the girls took the stairs.

On our ride up I thanked the husband for what the family had done. He told me that he and his wife value compassion and good citizenship as traits that they want their children to learn. "It's hard to teach these things, you have to do these things and then hope they see," he said, then he smiled and said, "so having children has meant that my wife and I started out pretending to be much better people than we were, but it's becoming more of a habit."

We both laughed and I admitted that a lot of the time when I was out and in public was spent in pretending to be the person I wanted to be, not the person I was.

I told this anecdote to a few people and several of them remarked something like, "Wow, if that's true, I can't imagine what was held back." I talked to them about this and they reminded me of times that I spoke up or spoke out. They thought, I guess, that being a good citizen or being compassionate was about being polite or being calm in all circumstances.

This floors me.

Thinking that citizenship is about being quiet and acquiescent? What? When I said what I said I was thinking not about being quiet those times I spoke up in the face of either prejudice or bigotry, but those times I didn't. I need to pretend to be stronger than I am much more than I need to pretend to be quiet and simply let things pass.

The hardest thing to shake off, in the real, tangible, face to actual face, world is complacency. Outrage and verbal smack downs on line are nothing like real world encounters. Being good at one does not translate into being good at the other. On line I can respond in an instant, in the real world I have to take a breath and steel my resolve before speaking up. Silence is the hardest material to break when it's the most important time to break it. I know.

Good citizenship and compassion are shown when you make space for another, at a cost to yourself, on an elevator. It's also shown when you ensure that a voice is heard when a voice needs to be heard.

Both are hard.

Both take work.

Both make us better people.

Those kids have amazing parents because for at least 4 years they have been turning complacency into kindness in order to teach their kids, and change themselves.

Wednesday, January 09, 2019

That's What It Means

"She called me that word," she said pointing at a woman about retirement age. "She said I should be out alone. She said that she shouldn't have to see people like me when she goes out." Her distress came from a deep dark place. She was one of the people who had lived much of their lives locked away from society. One of the ones kept out of public view. It was obvious from where I sat that she was devastated.

The staff who had been nearby had only heard the woman use the 'R word,' but was insistent that no other conversation had happened. That the woman in question didn't say anything about being out alone or being locked away. The staff thought that his client was, at best exaggerating, or, at worst, telling a lie to get attention. The staff was annoyed.

When talking to the woman, she was confronted. Yes, someone who had just suffered social violence isn't supported but confronted. The staff asked her bluntly what the woman had said to her. Again she said the the woman had used the R word and that she shouldn't be out alone, and the she shouldn't have to see people like me.

"I was with you, you weren't alone."

"She didn't see you with me, she saw you on your phone."

"I may have been on my phone but I did hear her speak to you, and the only thing she did was call you a bad name."

"It isn't just a bad name."

"You need to just take a breath here."

"No, I need to scream."

"She did wrong, she shouldn't have called you a name, but the other stuff never happened."

"You don't understand do you?"

Puzzled look.

"That what the word RETARD means!" she is crying now, "It means I don't belong, it means I should be shut away, it means that I shouldn't be out, it means that I deserve everything that happened to me. It's a word that hurts me, deep."

"Oh, you are making too much out of this. Outing is over, let's go home."

***

Some people don't listen. Some people don't learn. Some people don't care to listen or learn.

Tuesday, January 08, 2019

Two Men, One Woman, Your Opinion

It was hard not to notice her.  I was in a hotel gym that had a cable machine. This is something I can use and do a wide variety of exercises. I was about half way through my routine when I noticed her. I have a habit of closing my eyes when I am doing an exercise as that helps me stay focused on what I am doing and to not be distracted when counting reps. She had come in when my eyes were closed.

I only saw her back. She was a petite woman, on an elliptical machine and she was working hard. I'm gay and all but that doesn't mean I don't notice when a woman is really fit and strong. She was. I went back to what I was doing knowing that I had only a few minutes more before I had to go upstairs and shower and change and get ready for the lecture day.

My eyes were closed and I was counting, very near done, when I heard two men talking about the woman on the elliptical, about what 'a  nice ass' she had, and mooning over her figure. I'm thinking, 'ah, shit, leave her alone, she's just doing exercises.' Then, they burst out laughing, 'Holy shit man, Holy shit."

I finished my count and saw what they saw. She had finished her routine and was getting ready to use another machine. She had Down Syndrome. She was quite beautiful. She was really in shape. The two men immediately shut down their sexualized talk about her.

I'm conflicted. I'm not comfortable with sexualized talk about anyone by anyone in a public forum. I may be a prude but I figure that people need to just keep their mouths shut about other people's bodies or attractiveness when out in the world. Fat bodies, thin bodies, fit bodies, different bodies, all need to be able to just be and that means that others just be quiet.

The reason for my conflict is that their understanding of her as an adult woman, with Down Syndrome, shouldn't eliminate the fact that she is hot. That she is attractive. That she is an adult sexual being. That doesn't disappear because she has an intellectual disability.

Some may disagree with what I'm saying here. I have been accused of sexualizing people with disabilities, I tend to think that I'm suggesting that people with disabilities have been de-sexualized in the minds of the systems that support them and many of the parents who raise them. For me it's a simple equation. They are human, they are sexual, that's it.

I understand all the risks of victimization, trust me.

I hear stories of exploitation, a lot.

But here in this situation, it seemed to me that a woman's disability simply erased her sexuality, erased her attractiveness, erased her adulthood, and erased her full humanity.

What do you think??

Monday, January 07, 2019

Choose Movement: A Blog Not About Exercise

A lot of you know that I've been working at becoming stronger, going to the gym, parking far away from the mall entrance, using my wheelchair treadmill at home. I think a lot of people who do this come up with their own slogans, Nike did extremely well with 'Just Do It,' but that didn't really work for me, so I didn't borrow, I developed my own, 'Choose Movement.' This was powerful for me when thinking about my life - I'm naturally a sedentary person, I typically choose to be passive, not active. Going to the store, sit in the car while Joe runs in, that was my choice. But I 'Choose Movement' when it's offered to me. This really works for me.

But.

I ran into someone I hadn't seen for a while and we stopped an chatted. She asked me if I had noticed that she no longer commented on my blog. I said that I had and that there is an ebb and flow to people commenting on it so I didn't think about it very much. She said that something in my writing style had changed and she didn't feel as comfortable as a reader as she had in the past.

I asked her to tell me what she had noticed.

She asked me if I really wanted to know.

I said 'Yes, of course.'

Then she gave me her feedback. It was quite critical, and I have to be honest, it stung. I am old enough to know that if feedback stings it's because you recognize the truth in it. I listened, asked questions to clarify and make sure I understood, and when she finished, I thanked her for her feedback. Then, as we parted, it started.

"What does she know?"

"No one else feels that way."

"Not sure why she felt a need to attack."

This is what I do with critical feedback, at first. I have to get the hurt feelings out of the way. No one likes to be on the receiving end of helpful feedback. I did this for a couple of days.

Then, this morning, I lay in bed thinking about it. Her feedback suggested I needed to make a change in how I approached writing this blog. I had to think a little more carefully as to who my readership is and who I might be leaving out or leaving behind or criticizing by content. I thought about it and the phrase, 'Choose Movement,' came into my head. It's not just for getting my body moving, it's also about getting my mind moving, not becoming comfortable sitting in one place, getting my mind out of it's recliner chair and moving about and making change. I am, at 66, too young to get stagnant and stale. So I've dusted off my thinking cap and put it back on. To those who have felt distanced by the content of this blog, I apologize.

Choose Movement.

In every way that can be understood.

Choose Movement.

Saturday, January 05, 2019

Saving My Butt

It was rushed, it was chaotic, but finally it was done. The kids were in the car, their bags were packed in the trunk, my wheelchair was put away, and we were ready to go. It's amazing how, with kids, time both slows down and speeds up at exactly the same time. But we were on our way. I had a doctor appointment in the city and the girls were going to see their dad for the weekend. It made sense that they ride down with us.

We dropped them off, said goodbye and headed over to park in the lot of a mall that's right across the street from the doctor's office. We were well early so we decided that we'd do some grocery shopping, bring them back to the car, and then head over to see my doctor.

Joe pulled got the chair out and suddenly panicked. The cushion, the really expensive made for me cushion, wasn't where he expected it to be, where he always puts it. He tears apart the back seat and the trunk but no cushion.  We fold the chair up put it back in and drive up to a level where we got phone reception. We called Mike, did they accidentally take the cushion with them when they grabbed the girl's stuff? Mike checks, inside and then says he'll run down to where we parked to see if it's there. Got a text: Not here.

Next we call Marissa. We'd all gone out for breakfast before heading down, could she check the parking lot. We don't reach her but break all sorts of etiquette and leave a message. She calls us and tells us she is on her way to see if she can find the seat cushion.

We park and use cloth shopping bags and a towel for a seat cushion, and head into the mall. We get better reception there we wait. And talk. It's a winter day, a slushy one, if it's found, what shape will it be in. Joe must have, we figure, left it on the top of the car and, because of the panda and his monium, didn't do the final step of loading. We wait for the call.

Marissa calls to tell us that the cushion has been found. It wasn't where we parked and it had been run over once but she thinks it's still okay. She said she'd drop it off at our place and clean it up a bit. She assures us it's usable.

We go to the doctor's office only to discover that we've arrived a week early. My appointment was for the following Friday. Great! Suddenly our doctor appears in the waiting room and calls us in saying. 'One day I'll get some lunch.' I felt horribly guilty but then he assured me that it was okay and he was good with seeing us.

Finally we drove home.

We find the cushion, cleaned up and looking no different than the last time we saw it. It's just fine.

I call Marissa and tell her that she literally saved my ass.

We laugh.

That's the best way to end a story like this.

Laughing.


Friday, January 04, 2019

Low Weight

So this happened: 

I went to the gym today with renewed enthusiasm. I was excited because I'd done some research and found some exercises I've never tried on the cable machine. I found them on an exercise video on YouTube by a Paralympic athlete and both of them looked like fun and were reportedly good for developing muscles needed for pushing a wheelchair at top level. I have adapted most of my exercises from just watching how non-disabled people used the machines I can access. Needless to say many that I watched don't adapt to wheelchair users but a surprising number can be as well. I felt I had a pretty well rounded set but then, watching this guy's video, he mentioned a couple of exercises that I'd never done and that would, apparently, make me a stronger pusher. Awesome.

So I got there excited and I decided that I'd go through my regular routine and then try out the other three. The first was hard but doable, the second, well, it looked easy when he did it but when I tried it at what I thought was a reasonable weight, it was simply impossible, I didn't have the strength.

I kept lowering the weight to try and  find one where I could do the movement. I finally got down to a ridiculously low weight. My process of trying lower and lower weights was watched by a couple of guys who I see sometimes at the gym, they are so fit that even their poop has muscles, and, of course, as such, doesn't stink. Anyways, they chuckled as I dropped weight and ended with one that was really low.

But once I got there, I did 30 reps and really enjoyed the feeling of my muscles doing the new movement. I understood in doing why this would be helpful to me as I self propel my wheelchair. They guys watching still found it funny, a big guy like me and a little weight like that.  I grinned to myself because I know something those guys don't. 

Where I start isn't the same as where I finish. 

I am here now but I won't be here in three weeks. 

Don't laugh at where someone starts, be impressed that they start at all.

I finished all the new exercises and am now looking at how to fit them into my regular routine. The one that belongs to me and no one else. Some people need to exercise their kindness and compassion more than they do their biceps and triceps. What's the point of big arms if not to hold up others, embrace others, and keep others safe? Isn't that what we're all in this for?

Thursday, January 03, 2019

Wishing To Be Who I Could Have Been But Wasn't

I've heard a number of people talking about New Year's resolutions over the past couple of days. They ask me if I've made any. No. I haven't. Not because I don't have things that I wish to change, I'd like better control over my addiction to sugar and I'd like to like kale. But these things are so trivial aren't they. I've not heard people making much in the way of resolutions about the big changes that need to be made.

I had to pee. Peeing is an issue for people with disabilities just because the architects wish it so. So we went to a men's toilet off in a dark corner, the lights being off as the stores in that area of the mall are closed. Once in the accessible stall was taken. The person in there knew there was someone waiting because he called out that he'd only be a minute when I pulled on the door. I waited 5 minutes and I was bursting for a pee. I called to him and told him that I needed to go. He called back that he was changing, that the stall right then was his home, he had nowhere else. "OK," I thought, "But I really have to pee."

I decided to make a dash to the other men's toilet. It was a long way away and I didn't know if I'd make it but I had to do something. We left and I thundered through the mall, up ramps down ramps and finally I pulled into the other washroom and there was another homeless man in there, also having made camp. There is NO OTHER PLACE to go in the area. I really, really, really had to pee. I spoke to the janitor and he came and pounded on the door and asked the guy to get out so I could go pee. I'm dying now. But he gets out, I get in, and I pee. It felt so good.

It didn't feel so good later. I had a right to a space to pee in. But my feelings towards both men weren't kind. Even though my mind told me that these stalls are bigger, roomier, and I could see how they could be used as sanctuary, I was still angry that they had taken 'my space.' I get that I have a right to pee but I also have to get that other people have other needs. I don't want to sound like a bleeding heart as I'm writing this, I just wish that in these moments I could replace the anger with understanding even as I need to assert my needs. My anger is just another reason to hide away in a bathroom stall for safety.

He sits down beside me as I'm working out. I've seen him before, I know that he has autism, I've heard that explained by a staff that's usually with him to people who inquire about his behaviour. I think that his diagnosis is no one's business but the staff seems to think sharing it freely is acceptable. Today he has no staff, he has never spoken to me before and when he does I'm a bit stunned. He makes a really derogatory comment about my body. I sit in silence because I'm stung. Going to the gym always puts me in a vulnerable place but most people, thank heavens, keep their mouths shut. Since I don't say anything, he makes another even more nasty comment. He does so in a regular speaking voice as if it were fact that I was what he said I was. And. Maybe I am.

But, even though I work with people with intellectual disabilities, even though I am supposed to understand, I didn't. I said to him, "What you said to me is really rude, please stop." This devolved to me telling him to just leave me alone. And finally, he did.

Again, I was unhappy with how I felt inside, how I responded. I do have a right to be left alone and people don't have a right to make very personal comments about my body, true. But it's also true that so many people with disabilities aren't given the skills necessary to manage their world. You will find fat people at gyms, it's a given, the staff have seen the clientele, so, teach to the situation. I'm guessing I'm not the first person he'd made these kind of comments to ... help him.

I tried to stretch my understanding but it's only so elastic and it broke. I'm sorry, I could have been way nicer in my interaction with him. I need to tamp down my vulnerability such that it isn't an excuse for me to react like a jerk. I need to acknowledge I'm still hurt by ugly comments about who I am and what I look like and that I react harshly when that hurt turns into a feeling of humiliation.

If I made a New Year's resolution it would be about how to become a finer person, how to be a little nicer, how to use understanding as a tool so that I react like in the present like I wish I would have in the future. Does that make sense.

I vow only to keep living an examined life.

And I thank you, readers, for joining me on my journey.