Stairways in Unexpected Places

I had an appointment to see a specialist down in Toronto today. I'm always full of anxiety when I have to do this, it involves whole new people who I don't really have time to establish trust with. Walk in, drop trou, and let strangers examine my bare legs. I had fought against this consultation, figuring I didn't really need it because everything is pretty much under control and improving. But I was surrounded by a wall of insistence and simply gave up the fight.

So we arrived and the traffic around the hospital was horrible, just horrible. We finally found the address of the clinic and, to our shock, found that there was no sign of an accessible way in. Figuring that there must be (mustn't there?), we parked and Joe got out to scope out the situation. He returned saying that the entrance was only available to those who could climb stairs and we were to go back to the hospital and work our way in from there.

We had parked across, directly across, from the clinic. We had plopped down our 25$ payment. And now we were a long way from the accessible entrance. I double-checked our information from them. It was very detailed about what I needed to bring, what time I needed to be there, where I should park, it was all there. All but information about accessibility and the accessible entrance. This is a HOSPITAL.

I wheeled myself down the sidewalk, crossed over the street, and made my way to the entrance. The place was packed, everyone wore masks of course but, wow, there were a lot of people there. We had to do the COVID lightning round and then were sent to the information booth to find out how to get to the clinic.

Once there we realized that our leaving early paid off because, with all the bother about entrances and such, we were just on time. I was taken to a room by a nurse who was both all business and kind at the same time (as I keep insisting is possible). I undressed and put on a housecoat that I brought from home and got on the bed.

When she came back, I reported that I had a complaint.

I told her and she realized immediately that there was a problem. She told me what she was going to do about it. She ensured me she would effect change.

Then the flood of professionals came in and the consultation began.

Dirty (yawn) Dancing

 Last weekend we went to a drive-in movie, we haven't done that for years. We went because it was a fundraiser for Vita, and because Ruby and Sadie love the movie. What was the movie? It was Dirty Dancing. Neither Joe or I had never seen it eschewing as we do heterosexual romantic movies. Of course we've seen some, but this one was not one that we were interested in.

The movie started and I want to tell you some thoughts that ran through my mind.

1) Oh, my gosh, this is white.

2) None of the facilities were accessible.

3) A hotel full of waiters and not one of them gay.

4) A girl goes from wanting to save the world to wanting to save her man.

5) Does Patrick Swayze own a shirt?

I could think all this because I was essentially bored.

But when the lights went up, Ruby and Sadie were asking if we enjoyed going to the movie, the phraseology of the question gave us both an out, I would discover later that Joe had similar wandering thought, so we said we'd had a great time. And we did. Seeing the girls really enjoy a movie and sing along with the songs. Being out all together, feeling like family, acting like friends, wouldn't have missed it.

But we didn't say a think about what we really thought about the movie.

You know why? And this is a lesson learned over a lifetime and serves us well now.

You don't shit on someone's joy.

Safe Spaces

This has been bothering me for a couple of days, so I thought I'd write about it.

We went to the VanGogh exhibit on Friday and before we entered we were given some rules. We were told that we'd see circles on the floor and we were allowed to go into a circle together and advance only as other circles emptied. It was well thought out and executed and what's even better, people followed through with social distancing in this way.

Joe and I got to a circle where we were happy to stay for the whole exhibit, which happens all around you, and stayed there. People were popping into and out of circles trying to get a better view and enjoying doing so. Soon another couple came and stood in a circle just in front and to the side of us.

After a few minutes she leaned back into his chest and he folded his arms around her. It was a lovely gesture.

And there Joe and I stood, beside each other, together approaching 55 years. I wanted to feel his hand on my shoulder or to slip my hand in his.

But I couldn't.

I don't feel safe anywhere were straight people predominate. Where straight people define as their own. Now I'm not suggesting a squad of Van Gogh lovers would race us down and attack us. But I'm also suggesting that it's not outside the realm of possibility.

A few miles north of where we live, two men, walking along a lakeside path, were attacked for holding hands. Beaten.

Throughout all of our lives, I've never felt completely safe being completely gay outside my home or a gay bar or club.

So I sit, wishing Joe knew how I felt at that moment.

And knowing that merely telling him was not good enough.

Let It Be / Pay Attention

 We had finished grocery shopping and I told Joe that I was going to head over to the big box store at the other side of the strip mall. To do this I had to negotiate 7 or 9 really difficult curb cuts. The went from the road right up to the wall, so anyone in a wheelchair crossing them would have to push hard and fast to get across, using primarily one are to push and the other arm to hold the chair straight. After a couple, I had gotten the hang of it and was making pretty good time. My goal has always been outdoor pushing so this was a good chance to do that.

About a third of the way along there were a bunch of kids with skateboards, all young and at the age where nothing matches, their arms too long, their height not fully kicked in, the feet, huge. As I pushed some of them noticed me. One after another when rolling by asked if I wanted help. I'd say no, they'd say cool. This happened over and over again, never being asked twice by the same kid.

I was fading when Joe came up to me. He'd loaded the car with groceries and driven over to meet me. I made it in and relaxed a bit. I was not the sole person in a wheelchair in the place. A man, about my age, with an intellectual and physical disability, was there too. His staff was stopped talking to someone on the phone. He. sitting in an elaborate wheelchair was reaching over to grab a bag of chips. This was hard for him and he was working. Getting his body in position, reaching, his fingers came so close, I knew he was going to grab it. 

Then the staff noticed what he was doing and grabbed the chips and threw them in the cart as he threw himself back in his chair, defeated.

Goals are what are set around a table with professionals.

But some people have their own 'in the moment' goals. His was to get the chips and put them in his cart. Mine was to make it unassisted from one side of the strip mall to the other. I got offered help, my refusal was listened to. This fellow had help thrust upon him which made him a being incapable of doing what he's capable of. His goal ignored, his success denied.

We are not masters.

We are servants.

So we should ensure that we do.

What we are asked to do.

And

We should not do.

What isn't necessary to do.

Well Groomed Young Man

 We were in a line-up. We stood behind the red line which designated the appropriate social distance. In front of us were a mom and her son, a teen with Downs Syndrome. They were right in front of us and they were speaking loudly so we could hear. It began when Mom grabbed him, he had been standing in a reverie so he was startled, then she pulled his head down and gave him a big old kiss. She said he looked like he needed it.

He said, "Don't mom, I don't' like it."

She said, "Oh yes you do, and grabbed him again, he resisted but she was forceful and she kissed him again calling him her little boy."

He said, "Mom Stop! I told you before not to do that."

She said, "You can't tell a mother not to love her baby."

He said, "I'm not a baby, I'm a man."

She grabbed at him again, laughing, he fell backwards into the wall trying to avoid the coming kiss. He failed.

That was it for him he just gave in. He was deflated.

I leaned forward in my wheelchair and said to the mom, "no means no." I thought that was the shortest way to get to her to make her stop to think.

Wrong move.

She said, "You don't get to tell me how to parent my son. And it doesn't like you ever said 'no' to cake, think about yourself first and leave me alone."

Her son was watching her and seeing her anger wash over me.

He seemed relieved to be left alone for that period of time. He mouthed the words, "Thank you," to me, and then they were called into the store.

People with disabilities are over-compliant.

People with disabilities are statistically more likely to be abused.

Her son was setting boundaries, she was breaking them.

She was preparing him to be a victim.

Sometimes it isn't just the perpetrator that grooms victims 

Having Time Is a Privilege

 This is a story about going poo.

I am so unsurprised that disabled people can talk about toilets and needing toilets and using toilets with such unabashed abandon. I think it's because, in a sense, they rule our lives, our bodily functions need a place to function. It's like what would happen to you if you went to a bar and discovered that both toilets had broken down. Besides touching yourself in a manner of a 5-year-old, you'd talk about toilets.

Fridays Joe does volunteer work at the Food Bank, work he loves, and on top of that he really likes all the people there and enjoys getting out of the house - and I'm sure he also enjoys a wee break from me. We recognized after I fell on Friday and was on the floor for over two hours before he came home and found me covered in sweat and blood. So, we got me a phone.

What I usually do, note the word usually, is put the phone in one of the pockets of the walker and take it with me wherever I go. Well, this morning I was up and fully dressed by 6:30 because when Joe comes home we are rushing down to see the Van Gogh exhibit. I had to go poo so I got up and grabbed my walker and forgot to take the phone.

When I had done my business I pulled my pants up to my knees and suddenly felt something scraping my toes. I looked down and found that my suspenders (braces) had lodged themselves between my big toe and the one next to it. I tried and I tried and I tried getting it out. I simply couldn't do it. I had no phone to call for help and even if I did, this seemed like a silly reason to call. Finally, I decided to unclip my suspender (brace) and let it fall to the floor. I reasoned I could stand up and then pull the suspender free.

That did work, it flew behind my food and then I put my foot back down my heal right on the head of the suspender (brace) and pain shot through me and I fell against the wall and began sliding down towards the floor. The idea of laying for hours in front of a toilet that's just been used was beyond me. So I grabbed out at the bar, ceiling to floor, that we have for a grab bar and it held my weight and suddenly I was standing again. I made it back to my chair, completely exhausted and overwhelmed. My mind was full of:

1) fear of falling

2) a worry of what-ifs

3) loathing of dependency

4) relief that I was done

That's a lot.

I'm reminded here about people with intellectual disabilities who have days or situations when their mind thusly fills. Frustration upon frustration, disappoint upon disappointment, everyone experiences that, but people with intellectual disabilities might experience that a little bit more in ways that are invisible or unthinkable to others. Many of you never have to worry about pooing, about mobility, about falling, and hospitalization. I'm also reminded that they, unlike myself, have staff whose job it seems at times is to push and prod them, we call it encouragement, they might experience it as cruelty. How many times have all of us screamed, "I'VE HAD ENOUGH, LEAVE ME ALONE, I NEED A SECOND TO GATHER MYSELF". We all know that there are times when being left alone is the most powerful gift we can give someone.

Once my mind had settled I was able to move on. I put my phone in my walker, I came here to write this blog and my day moves ahead. Because I gave myself the time I needed to pull myself together.

Time that belongs to me.

Suddenly Karen

 It was like I was suddenly Karen.

We had gone to a patio to have an iced tea. We'd spotted a table and I rushed towards it, Joe didn't follow because I didn't need him to. He went to get the tea. A table was set up in the corner and I pulled out one of the chairs and pulled my knees under the table. Seconds later the door that was beside me slammed open smashing my wheelchair and startling the hell out of me. I said, "You smashed my chair." In these situations, I worry first about my chair and then about everything else.

She started saying that the doorway couldn't be blocked. Now several things. In the days of COVID there are lots and lots of closed and locked doors. The table was set up by the staff and before I moved the chair it was directly in front of the door. Finally, I'm highly visible and it was a completely glass door. She apologized profusely, way too much, saying she didn't mean to bother me. She didn't help me to move the table, move the chairs and create space in front of the door that she had slid out of.

I kept saying, because she kept talking, "I'm not bothered, I was started and, you smashed my chair."

Then the man at the next table turned and said with huge hostility, "Well, you were sitting in front of a door, what the fuck did you expect?"

Who is this man, why is he in the conversation, and what's up with the hostility?

I said, knowing he had seen me arrive, "The table was set up in front of the door, I just moved a chair to get in."

He told me that I was being fucking rude.

I hadn't sworn, I hadn't gotten angry, and I hadn't yelled at her except the first time when my chair was struck, with force, by the door. Now other people were weighing in. I'd sat in front of the door. If my wheelchair had been broken it would have been my fault. I felt all this weight of their anger and I couldn't understand why this had gotten out of control

All during this, she kept apologizing to me. I wanted her to just stop, it was overkill. I told her it was okay, but she wouldn't stop.

I don't think I was a person then, I was simply someone, not quite human, where they could dump their frustrations. I think difference is a magnet for socially inappropriate behaviour. I think that's why things could get dangerous for us out there.

Then, Joe arrives with iced tea. He looks around at all the players and his presence seems to silence them. Joe looked at me and said, "I'm guessing you are glad to be blogging again soon huh?

Careful Now

 Be really careful about how you read this.

Be really careful about how you respond to me.

I'm even uncomfortable writing this because I fear how people will react. But I want to be transparent about my life and since I don't take pictures, this blog is my personal record of my life.

So.

Today.

It was my first day of retirement and it got off to a bad start. We'd stayed up past midnight watching 'Away' on Netflix and just before going to bed our smoke detector went off. Oh. My. Does that make a noise! Joe got out a stepstool and gingerly got up on it with me shrieking "Good God Don't Fall'. He was unable to do anything. The thing beeped in a pattern, one, short pause, three, longer pause, one, then a fairly long pause. We went to bed after shutting the bedroom door to block out as much sound as possible. We both had shitty sleeps.

Once up, we got the thing fixed and then faced the day. It was my first day of retirement and I had something special planned. I've been seeing a nurse every week and she's been teaching Joe how to do a treatment for my legs that has made me more stable standing and less of a risk when using the walker around the house. Three weeks ago, I started some leg and butt exercises that were aimed at getting me up and moving a bit more with my legs, not my wheels.

I had set it up in my mind that today I would go for a walk in the mall. I would roll in with my chair, Joe would carry in the walker, and then we'd go to a place in one of the very large stores where there are usually very few people. Sitting at my desk after that horrible sleep, I almost gave up the idea. But I asked Joe if he could fix my legs and if he was up to going out. I hadn't told him my plan, that was to be a bit of a surprise. He didn't understand why I wanted my walker brought along but he was tired and asked no questions.

We got to the area and there were more people there than I expected and again I almost gave up. I don't like to be watched or stared at. But, I locked my chair and stood up. I took the walker and instructed Joe to follow quickly behind me hoping if I fell, I'd fall back into the chair. I looked up, set a goal, and headed towards it. My walk was slow but my gait was steady, I made it to my goal, turned around, and walked back. About halfway to the start point, I flagged. I had to stop several times to catch my breath and relight the pilot light on my determination. I made it.

Just before I sat down a group of three very young teens bolted over to that area playing some sort of catch and release game. They came to a stop when they saw me. I could see their eyes take in the whole scene. Me, a huge man, with a walker, and a wheelchair just behind me. They started laughing but slowly the laughter died, it was like they took a second to realize that this was a sacred moment for me and the wind left them, then they left me alone.

Why am I worried how you will read this and how you will respond to it.

Decades ago I worked in a school with kids who had physical, not intellectual, disabilities. One of them was a wheelchair user and after one summer he came back walking with the use of crutches. I walked with him to his first class and when he went in everyone applauded and cheered him.

That made me uncomfortable.

My walk today doesn't mean anything really.

It doesn't mean that for those few minutes when I was up and walking that my status had changed, I wasn't more worthy, I wasn't fundamentally changed.

But walking has become, to many, the deal-breaker. "I survived a terrible accident and I was left 'confined' to a wheelchair." "I can't imagine not being able to walk."

Walking is like the very limit of human imagination - there is nothing of value beyond it.

What I did today was a different type of exercise. In fact, I was slow and my steps were labourious - my movement in a wheelchair are quick and graceful in comparison.

So, please.

Don't cheer.

The Wave

 We were out for Mike's birthday, sitting on a patio, in the middle of a pandemic. The girls were with us because our car is too small to have 4 people in the back seat. Mike and his girlfriend Joss were following in a cab. We arrived at the restaurant first and were seated on the patio, with goodly distance from others there. We sat Mike and Joss arrive and hop out of the cab on the opposite side of the street. I waved to get their attention.

In truth, I was thinking that I just wanted this to get over with and then go home. I'd had a busy day in the office, there was so much to do. I'd had an emotional day in the office as well, we had driven down right after my virtual retirement party and I'd seen some people that I didn't realize how much I needed to see them. So I was drained. The prospect of a very late lunch or a very early dinner with all the noise that accompanies birthday parties was daunting.

As I was waving to Mike, an elderly homeless man was going by. He was dressed in a sweat suit and never had the name been more appropriate. He caught my wave out of the corner of his eye. A wary smile pulled at his mouth and he turned towards me. I saw him and didn't see him at the same time because I was trying to get Mike's attention across the street. He had fallen out of focus.

Mike waved back and I relaxed into my chair and it was then I noticed that he had started walking towards us on the patio. He was hesitant as if each step he took was a risk. There was a question in his eyes? Me? You were waving to me? I realized what he thought and I smiled and called, "No, I was waving to someone over there?" I pointed where. His face fell, the smile disappeared, faint hope was gone. He apologized and turned and continued on his way.

I thought two things:

How often do I feel inconvenienced by thinks that I should be grateful for?

That interaction with that polite old man left him hurt. Accidentally. But hurt nonetheless. I've been wondering what I could have done, at that moment to make him feel valued and less alone. Ideas? 

Coming Soon: Blogging the Continuation

 Hi, I'll be back to blogging a week after labour day. Hope some of you will pop by again.

What Grandma Wants

We've all made it.

Now can we all do it?

2020: The Year of Hindsight.

I've been thinking about that over these last few days. How wonderful it would be to be able to look back over time and see the decisions I've made, the hurt I have caused and the joys that I experienced. How wonderful it would be to be able to see, with clarity, where I am on my journey through life. How this is an important opportunity, not for resolutions but for a double check on the state of my values. Have I lived according to what I believe? Have I acted in concert with my vision? Have my values been an anchor for me?

"Hindsight is 2020," is an expression I first heard from my grandmother as a child. I didn't really understand what 2020 meant, it was unusual for my grandmother to speak to me in riddles. She said it to comfort me as a child. She wanted me to know that I couldn't always determine the outcome of my actions and that when I did something that caused me hurt or embarrassment, I could always see the inevitable outcome afterwards and the decision I should have made became clear when looking back.

I did come to understand the meaning of the phrase. It wasn't a riddle at all. It was a challenge to look back and see how I got to where I was. It was a challenge that I didn't take up all too often. Such clarity hurts and erases plausible deniability. Yes, I did what I did. Yes, where I am is a result of where I came from, decisions made in the past.

I work with people who are vulnerable to the every-day casual assumption that others know best how they ought to live their lives. People who are served by people who need, desperately, to look back, to review how they've used their power, people who need to course correct regularly.

I am surrounded by people who need the best of me. At work, at home and in the world. I need to ensure that's what they get. Am I the best of me, have I compromised my self for the expediency of acceptance as such is expected by the different?

I don't know.

But, I'm gonna look.

It's what Grandma would have wanted.

The Fight Is The Gift

Yesterday we went to see a performance of Handel's Messiah at the Roy Thompson Hall, it's a tradition of ours and we both really enjoy it. We left early enough to get lost in the streets of the financial district, another tradition, even with all that we were in our seats about a half-hour before the oratorio and we both busied ourselves reading the program, seeing who the soloists were this year. The mezzo-soprano had a dynamite resume and the tenor's was unusual in the frankness it dealt with his sexuality and his involvement in the LGBT movement. We had seen him before in Hadrien, a new work by Rufus Wainright and knew that he had a stellar voice.

The lights dimmed, the crowd fell into an anticipatory hush and then came in the first violinist, the conductor and the 4 soloists. The mezzo was wearing something a bit unusual, I'm not good at describing clothing. She wore a kind of flowing golden brown trousers and a black top. After some applause, they sat down. She sat with a straight back and her legs were comfortably set, apart, not pinched together.

People were non-plussed by this. Even after she sang, with a voice that could bring down brick and mortar, It was stunning to hear her sing. I greedily looked through the program counting out the number of times she would be singing. She brought passion and artistry to the stage. When the tenor got up to sing, several people glanced at his bio and realized that he was out and proud and gay. The pointed to the bio and passed it around, while he was singing beautifully.

At intermission all I could hear people talking about was how 'distracting' her posture was and how they wished they hadn't read the gay man's bio - "that stuff shouldn't be shoved in our faces." I sat back in my chair and grinned. Being oneself is still controversial. Being different is still an act of defiance.

The fact that these people were roiling in judgment at an oratory called, "the Messiah," you know the dud that hung around with people that most would ignore.

Another gift of the season, seeing people, of remarkable talent, dare to be who they were. That's what the fight had been for, and those that follow us, are still fighting, in arenas we never thought possible mere years ago.

Birthday Blog: An Unexpected Gift

We were at Dave and Busters in the arcade after having had a birthday lunch, complete with a home made purple birthday cake from Marissa and the girls, playing games. Joe and Ruby were in some contraption called "the Typhoon" and having a blast. I was sitting off to the side watching the screen. I noticed a man with an intellectual disability who moved in ways different than others come and stand behind to watch. He seemed fascinated by the game and the machinery it used. In his right hand he held a card, like all the rest of us he had a playing card used to pay for games.

He, it turned out, wasn't alone. He was with another man who was close by who seemed to simply follow him about. He, the other man, also had a game card in his hand. Then I noticed the staff who was with them, he was watching a third man playing a game. If I wasn't in the sector, I would have found it difficult to identify the staff. I couldn't SEE him. He was right there, he wasn't a small man, but I couldn't SEE him.

Because he didn't do anything 'staffy'. He didn't control the cards, he didn't control the choices, he wasn't hovering about worried about the sensibilities of those uncomfortable with difference. These men were together but untethered. They moved about freely. FREEly.

I approached the staff and asked him if was supporting these men. He said he was and I said, "Well I want you to know you are doing one hell of a job! These men have their own cards, play their own games, make their own choices, it feeds my soul to see this today. I then told him my name and what I did for a living and I asked what agency he worked for and he told me. "You have given me the best birthday present ever," I said and meant.

I will not congratulate the agency. Not yet. That's premature. I congratulate HIM. He works in the system but has not been infected by it. He sees these men as capable as citizens as choice makers. One day the system may catch up to him but for now I'm just glad he's in it.

In every way imaginable Direct Support Professionals have power in the lives of people with disabilities. Some choose to use it, some choose to misuse it and some give it back. This man and his easy-going nature was diligent without being belligerent. There are probably those in his agency that don't like their jobs, that blame 'the system' and 'the supervisors' for everything ... those whose attitudes sour the days of those they support.

I have them ask me questions when I give lectures, "How can I do these things when my boss blah, blah blah?" This man has a boss. This man has expectations placed upon his shoulders. This man navigates the same system. And yet he know how to be free of it. He knows how to create freedom for those I support.

For someone like me, who has been part of the movement towards adult rights for adult people, for human rights for human people, for disabled rights for disabled people, it feels good to see the realization of what once was a lofty goal.

It feels good.

Really good.

Happy Birthday to Me.

Gratitude?

We were leaving the mall heading for the car. My wheelchair legs are a bit low and often scrape the ground when I go down cut curbs. As a result, I simply turn the chair around and go down backward. I do this so often it's automatic and done with ease. Joe was walking with me, helping me to watch out for cars, but once I hit the pavement I swivel back around and continue on my way.

There were a lot of people heading out with us and I was amongst the last to make my way across to the parking lot. A truck was stopped waiting for the way to clear. I only noticed the truck, I didn't see the driver. I didn't even look, like everyone else I just crossed the over to where I could see our car.

But I'm not like everyone else, as the world seems to want to remind me on a constant and ongoing basis. As the truck went behind me the driver called out to me, "Hey, you fat fuck, how about showing a little gratitude." And he was gone.

Let's leave aside the issue of what he called me and talk about what he expected of me. Unlike everyone else who crossed the street, I was supposed to show gratitude for his waiting. As if it was an expectation for everyone else and a gift to me. Why can't I simply expect to use public space in exactly the same way as everyone else?

I like to think I am grateful.

Yet I don't feel that I owe gratitude to anyone. Disabled people are expected by some to be 'grateful' for simply being and doing. We who were exiled, who lived at the margins of society, now must bow our backs in gratitude and supplication to anyone and everyone whose sight is besmirched by our presence.

No.

Gratitude is mine to give.

And there is power in withholding.

Family

Occasionally when out in the car we will pull up to a set of lights that are places of employment for those who ask for money. Their signs usually tell you what they need, and those needs are the really fundamental ones: a hot meal; a place to stay; warm clothing; take care of my family. Joe and I always, if we have money on us donate. It's hard work doing what they are doing and because of that, we imagine the need is equal to the effort.

Recently we pulled up to a light and a fellow held a sign up: Disabled Trying To Survive Ford. I pointed to the sign and though it was probably supposed to elicit a laugh, it's really not funny. I pulled out something to give him and Joe catches his eye and he heads towards us. He walks using arm brace crutches and he rushes to us nearly tripping a couple of times. He's only got the space of one light to make it.

He gets to us and took the bill from Joe's hand and then sees my wheelchair in the backseat of the car. "That your's he said to Joe," on hearing that it wasn't "That your's?" he asked me. I said that it was. He held up the bill and said "Any part of this from you?" I said that it had come from my wallet.

"It's not charity then, it's a gift from family!" he said, kissed the bill and then called God's blessing down on us as we drove away.

Air Hockey

Sometimes existence is a political act.

Being different in public space requires an act of defiance and a reclamation of ownership. I belong here. I dare to exist, as I am, as all that I am, here. There is a reason that the word 'community' has both a 'U' and an 'I' in it. I belong too. Nothing you can do can eradicate my right to this space nor my right to be different in this space.

After the movie, I headed straight to the arcade, I was in the mood for a blistering game of air hockey. The arcade was empty when we arrived so I grabbed my spot at the end of the table and Joe went to buy tokens to play. Seconds, after he left tons of children poured out of a movie and overwhelmed the arcade. A couple of the kids were very disappointed seeing me plucked in place, they wanted to play so bad that they eyed the table with longing.

Joe came back and popped the tokens in and we set about playing. We play the game hard because each of us wants to win and we've been married long enough to be bloodthirsty about it. The puck flew back and forth and the score stayed close through the game. I was laughing at one point because I had scored against myself for the second time in a row.

I heard one of the kids say to the other, in reference to me, "I thought they were all just sad." It was like he was having a revelation that disability and joy and laughter weren't mutually exclusive. That disability and playing to win were both possible.

I do not exist to be anyone's lesson, but I'm not unaware of what it means to be out and disabled and participating in activities that I enjoy. I'm not unaware that existence is political.

We've worked so hard to rid disability of the stigma that comes from shame and sadness, with all the integration and inclusion that I read about, I expect more from children. In my day, I'm 67 I get to say things like this, we never saw a disabled person anywhere.

I wonder if we are now in classrooms and school hallways but are not yet seen. Not yet understood. Our lives left to the imagination of people without enough imagination enough to make us human.

The game ended in a tie: 5 -5.

But for me, it also ended with a win.

My Good Opinion

Joe went to get the car as I waited just inside the door of the mall. As soon as I caught a glimpse of the car's blue, I headed out the door. I was about half way to the car when a young man, maybe 20, said, "Can I help you?" I was too tired for annoyance, so I just said, "No, really, I'm good." I smiled at having to refused clearly unneeded help.

He caught the look on my face and he grinned back at me.

Then peppered me with offers:

Do you want me to clean the salt off the walkway?

Do you want me to help with your bag?

Do you want me to wait here with you?

I then saw that Joe had parked in such a way that I'd never be able to get in. I waved to him to roll down the window. I said to him, " Just pull down there and I'll meet you there," and I indicated a vacant space that we could use. Joe didn't hear me and indicated so.

"Oh, do you want me to get a message to him? I can run back and forth?"

That did it, I started to laugh. He was mocking himself. It was like he knew better and had slipped up. He wanted me to have a good impression of who he was.

I told him that I'd be fine but thanked him for the laugh.

"We're good then?" he said.

"We're good." I answered.

I raised my voice so Joe could hear me, he saw where I was indicating and pulled the car away. I then headed down to meet him.

This was an extraordinary experience for me. This young fella was worried about what I thought of him, most of the needless helpers are performing because they want the approval of others and I'm just their prop. Here, I mattered.

He wanted to be held in my good opinion.

And, he is.

Dave Goes On An Outing

Before we left we decided which of the two movie theatres we'd go to, how we'd get me in, and how we'd deal with the slope when we got home. Accessibility is a participatory sport, you need to plan and you need to adapt at any given moment. 

Once in the car, we headed out. The first thing we noticed was that all of the curb cuts, every single one of them, were buried under mountains of snow and ice. Non-disabled people had difficulty getting over them. Even on sidewalks that had been shoveled, the curb cuts were left. On days that they were needed more than ever, they were simply gone.

When we got to the theatre we noticed that the parking lot had not been recently shoveled. You could see pavement from where cars had parked and packed snow and ice between the parking bays. We decided to let me out,, right at the curb cut, which was free of snow because it was under the theatre's marquee. It was a difficult maneuver, and I felt that I was going to fall a couple times. But I managed to get into the chair and then into the lobby and finally into the movie.

Victory.

I hadn't been out for two days, it felt good.

On the way home Joe stopped to pick up a couple of things we needed at the grocery store, something I'd normally join him for, but I waited in the car. Beyond it being too much work, it was also a little dangerous: I could fall; Joe could fall when helping me get through the ice; the force needed to get my chair through the ice and snow could damage my chair.

So I waited.

By myself.

"But," I told myself, "I'm out, not in. We accomplished our goal."

That had to be victory enough.

locked out

I like where I live.

I am lucky, really, really lucky. I have a fully accessible home, a rarity where I live. This means that I have everything I need to be comfortable and safe. And not just inside ... we also have neighbours that watch out for us and help out with things that we need help with, in the back yard and out front when it snows hard.

I am happy here.

Right now our Christmas tree is blazing, traditional carols and hymns are playing, and I've a heater beside me keeping me toasty warm. It's nice. It's lovely.

I am trapped here.

My wheelchair just can't handle the snow, not like we are getting this year. We got up this morning with plans, and this evening we were going to over to the community center for a senior's holiday dinner, but this morning, early, the snow began to fall. By the time we were ready to go out Joe would have to grab a shovel and start shoveling. I'm not having that happen.

So I'm writing this.

To all those who are in when they want to be out, to all those who depend on weather, others, or spoons, to those who know that captivity is captivity no matter who the kidnapper.

But I am lucky.

I like where I live. And I live there a LOT.

Permission

I was sitting at an event right beside a woman with an intellectual disability. I'd seen her around and we'd chatted a couple of times but it would be a stretch to say that I knew her. Wheelchair users seats are pre-determined, we sit in spaces that have been predetermined. That day it meant that she was sitting beside me.

We chatted like we normally do and then the event started.

Over the next half hour, she asked me for permission to:

get more popcorn

go to the bathroom

say hi to someone she just saw come in

scoot around the back of my wheelchair to get something she dropped

Now, only one of those needed my permission but all the rest certainly didn't. I used up my store of:

it's up to you

do whatever you want

you don't need my permission to do that

It was shocking the degree to which she handed her power over to me. Without thought of the dangers of that move. Without thought regarding loss of autonomy. Without thought about who I might become if I consumed her power.

It would have been easy just to give her permission, it would also have been quieter because my approached caused her a bit of panic. It would have been easy to fall into that role.

But, she's about 5 years older than me.

She is my elder.

It's time that she take the reins of her life.

And gallop.

Flipping It Off

I made it to the door. It was cold. Really cold. My fingers were stinging from having to grab cold metal to push myself along a sidewalk that was heavily salted. It had been a hard push. But I was at the door, warmth waited inside. I pushed the automatic door opener and ... it didn't work. Joe was meeting me there so I was on my own, shit. I pushed two or three more times thinking that maybe one more try will magically open the door.

Finally, someone came out and saw me and offered immediately to hold the door for me. I eagerly accepted their help and headed in throwing thank you's over my shoulder. When I was in I spoke to the manager to report that the auto door opener wasn't working and the difficulty it would cause disabled customers.

He told me, and this will stretch your WTF muscles to breaking point, that the door worked it just wasn't turned on. He showed me the flip switch that would activate the door. He told me that he'd leave it on until I had left. And then you will turn it off, I asked and he said that's exactly what he intended to do.

Why? I asked

He explained that it annoyed him and a few of the other staff that it was used primarily by non-disabled people out of sheer laziness. It was put there for disabled people.

I said that this policy had meant that I sat out in the cold unable to enter. He again said that he was sorry.and then said that he didn't have very many disabled people as customers so he didn't worry about it much.

Ok, forgive me but this is just plain stupid.

Why did he care if non-disabled people used the button, maybe they had boxes and bags, maybe they had baby strollers or were holding on to the hand of a child, maybe they just liked using it.

Seriously, who cares.

Well, he does.

I swear that when it comes to accessibility people are just plain weird about it, and who needs it, and who uses it.

When we left, he came right out to switch the auto door off.

I simply don't get it.

Freedom Too

I don't think anyone heard us.

We were speaking quite low.

But what was happening was that three of us were talking about materials to teach someone about anal sex, after lunch, and over a sharing plate of sticky toffee pudding.

We all laughed when we realized what we were doing.

We all stopped when we realized why.

People with disabilities, even those who have grown up in the community, are still far removed from the opportunity to slowly grow into their adulthood. People's opinions aren't just opinions they can actually be immovable barriers. Agencies policies aren't just policies they are commandments that can bow even the strongest back. Peer rejection isn't just rejection it can be an act of bigotry that locks an invisible gate behind which the shadow of the institution remains.

Freedom.

Freedom from.

Freedom to.

There is much to celebrate, we were after all talking about training that would happen, training that was sought out, and more, training that is being allowed.

Because that's where we are still at ... people with disabilities not having rights but allowances. I will decide, your team will decide, the agency will decide, your parents will decide if you have the right to ask for and receive information about your body. Your body is not yet yours. Your body is a political thing. Your body is a territorial thing. Your body is not under your control.

But even still.

It's important to celebrate those three people leaned in over sticky toffee pudding and talking about anal sex and how to teach it.

Because that means someone, somewhere, said, "Yes, go do this."

And while that voice and those words still must come from others. It's a welcome voice. But even welcome voices need to become unnecessary voices when it comes to the body of another.

Freedom.

Freedom to be an adult.

Freedom from the power of others.

Speak For Yourself

On Sunday we decided that we needed to inject a tiny a bit of class and culture in a weekend Netflix 'Dynasty' haze. To meet that end we went to see Shakespeare's "A Winter's Tale" which was being broadcast live from England. It was playing in a movie theatre neat us, Shakespeare and popcorn! We arrived to find the disabled parking quite flooded from melting snow so we stopped at the ramp leading to the theatre and Joe got the wheelchair out and I got in. He turned to help me get through the doors when someone appeared saying, "I'll hold the door for you." Joe said, "No, we're good, we have this routine down. "It's okay, I don't mind." Joe again, "Please just let us do this on our own." No, I'm waiting for my brother in law who is in a wheelchair too."

And then she said it, "So I know what it's like."

I hear this freaking phrase far too often. People speaking of 'knowing' what disability is like because they, pick one:

1) had to use a wheelchair when they broke their leg.
2) had a relative of some sort who had a disability.
3) went to a training where they had to undergo a simulation of disability for 15/20/45/60 minutes.
4) once worked at a camp with disabled children.
5) presently work with adults with disabilities in some capacity.
6) saw this documentary or psa about disability, and oh how it made me cry
7) have a child with a disability - of any age.
8) once saw a person with a disability across the street.

This is theft.

This is silencing.

This is erasure.

I don't care if you worked with, lived with, parented a person with a disability you don't "know what its like." You know your experience, but that's YOURS not mine. A parent doesn't "know what it's like for their child;' a staff doesn't 'know what it's like for the person they serve; and using a wheelchair for a week or two doesn't give you the slightest clue as to "know what it's like."

Speak for yourself. Your experience is valid and valuable in the discussion of disability but your experience is just yours. Disabled people who live 24/7 with their disability are the only one's who "know what it's like." But even there. I know what it's like for me, I know what my disability means and doesn't mean. But I speak only for me and my experience. I do not speak for and cannot speak to the experience of someone who has a different disability and different life realities.

So.

In any and all situations you need to 'speak for yourself.'

And, no one else.

A Challenge

Kindness.

This month's issue of 'The International Journal for Direct Support Professionals' is one that I wrote on what it means to be, or do, kindness. It was published this month because on Nov. 13 we celebrate World Kindness Day. In the article, I challenge people to spend an entire day being kind in all situations, with everyone.

I am taking the challenge myself, knowing that I'm going to fail, sometimes, get it wrong other times, but I'm going to try. Kindness is an action not an attribute so that means that this will be a day that will exhaust me.

So I challenge you to take the challenge and then come back here and tell me all about it!

Moving Forward

It was the morning after the first snowfall of the year. Much more fell that we expected and, as we were up early getting ready for me to go to work, the plows had not yet been through. We took a second to turn on the television to get the Toronto, where my office is, weather report. We found the station and then listened as a poor reporter stood out in the freezing cold talking about the snow and ice.

The reporter was down somewhere near Union station and you could see pedestrians quickly scooting by. Then a man entered the screen to her right and walked off screen to her left. He never looked at her, or the camera, he was solely focused on moving forward.

He had Down Syndrome.

He was alone.

He was going somewhere.

I've always thought that disabled people by the very nature of disability, ableism and disphobia live our lives as an act of open revolt. The very fact that we are shopping, and going to movies, and going to work, and going about our business instead of plummeting from bridges and over-passes gives the lie to the idea that disability is a life unworth living.

So there he was.

Walking across the screen like an advertisement for 'Not Dead Yet' he simply was.

When I write things like this, people often comment that his triumph is really our own, as parents and teachers and support workers. We so want the taste of victory to be our own. But no one can understand what it is to be him there, except, of course, him there. No one can know the stares he faces, the names he's called, the spaces closed to him.

We do what we do.

But it's his walk.

And he made it, in the very early morning of the first day of ice and snow.

He will arrive at his destination with freedom in his wake.

What The Dog Wants

Photo Description: Close up photo of a gentle faced doberman /German shepherd mix

Right now, as I'm writing this, Lucy is sitting beside me. It's taking a long time to type these words. You see right now, Lucy has decided that her need for affection and affirmation is the only thing I should be attending to ...

excuse me ...

be right back ...

OK Lucy is now full up on hugs and love.

I admire this about her. If she could get up and debate with behaviour therapists, she would want to make the case that love isn't contingent ... if it is it's toxic.

I have always maintained this, I wrote 'the 10 Commandments of Reinforcement' a long while back wherein I stated that rewards could be contingent but that love should never be. Lucy here is a follower of that philosophy.

Lucy has no difficulty in seeking out affection when it's needed. She has no problem in communicating exactly what it is she wants from us in that department. "Scratch behind my ears" is different from "stroke the underside of my throat."

I wish I had the skill of asking for affection when I needed it.

I wish that I didn't feel embarassed at how much I need it.

But there you have it, Lucy the pooch, believes she deserves it any time she wants it. Maybe that's why she seems so much, so very much, more at peace with herself.

Damn dog.

Today We Vote

Photo Description: Three maple leaves one brown, one yellow and one red are placed over the words "Happy Thanksgiving. Credit: This work was found on the internet here: https://dayslee.ca/2017/10/07/happy-thanksgiving-day-canada/

Today we vote.

The advance polls open just a little after breakfast time. Joe and I are away, in Edmonton, on the day of the election so we've planned to get in the car and drive over to the center and mark our ballot.

Those who know us, and even many who don't, know how we are voting. We have one of those lawn signs in front of our place, and in a mammoth tribute to our neighbour's practice of diversity (for isn't diversity something that is done?), there isn't a single mark on it.

But that doesn't matter here. What matters is that, on Thanksgiving Sunday, we are given the privilege of voting. Of participating in the responsibilities of citizenship. Of raising our voice in regards to the direction we want to see our nation take.

I remember our neighbour Tess. An American citizen who lived most of her life in Canada. Near-death, she decided to become a Canadian. Shortly after she went through a process, sped up because of the circumstances of her health, and became Canadian, a Federal Election was called. On voting day she was carried out of her apartment on a stretcher. The poll was in the lobby of our apartment building and she made them stop so she could get a ballot and vote. All while laying on the stretcher.

She wanted to become a Canadian to honour the life that she had lived in this country, she wanted to vote because she wanted to be counted, at least one more time, before she died.

I remember speaking to my father, him too in a hospital bed, about the war years and listen to him, for the first time, tell stories of the war. My father was not a man to ever show pride in accomplishments, but pride did slip into his voice as he spoke of being one small man in one great big war. He had served his country and that mattered to him. He was quietly proud of his grandson, my nephew, who also serves.

He and my nephew served and serve this country, keeping us safe and free.

And all that's asked of me is that I vote.

And I will, in a few hours, in Thanksgiving for the freedom on this day of giving thanks.

Ready

The last item was scanned and the clerk turned to me and asked, "All ready for Thanksgiving now?" I looked over the bounty packed in bags; turnips, carrots, potatoes, acorn squash, the Tofurkey roasts, and was about to say that we needed not a thing more, we were ready, when I noticed the store had created some prepackaged bags that could be donated to the food bank.

I grabbed one and passed it to her and when she scanned it, I said, "Now I am."

Joe took the bag to run it up to the drop off while the last small items were packed.

Behind us was a couple, probably in their late 20's. He wore those kind of glasses that made his eyes look a little bit bigger than they were. He and those eyes were staring at me. And he was crying.

He turned to the woman he was with and said, "To see such generosity from someone given so little."

The obvious inappropriateness of his remark was such that even the cashier blushed. Joe arrived back from dropping the food off and we were ready to go.

I didn't say anything.

Because I've been given much, and much beyond a life lived with purpose, a life lived with love, and a life lived with adventure, I've also been given an extra dollop of restraint to use, at will, when I needed it.

Happy Thanksgiving to all who celebrate the occasion. 

The Misters Buttigieg

I hear a lot of straight people congratulating themselves on the presidential run of Pete Buttigieg. Even here in Canada people who speak of the American election often borrow from what they hear on American television, "It's a sign of how far we've come."

We?

We?

Who is 'we'?

Joe and I have been following Mr. Buttigieg's campaign fairly closely and therefore I can assure you, 'we' haven't come that far at all. Just take a moment to read comments on news about the 'gay candidate'. It doesn't matter Fox news or CNN and you will find vitriol. Absolute violent vitriol. Mayor Pete's last name starts with the letters 'Butt' so you can imagine the kind of hateful, homophobic remarks stem from that little coincidence.

Mr. Buttigieg is where he is because he fought to be there. He's pulling America forward. He's making it thinkable that gay people can achieve high office. It's down to him. I get up every morning and go on line to check to see if he's been assassinated, that's how deep and terrifying the comment columns are. The fact that Both of the Misters Buttigieg are up to this challenge and rise to every day possibly being the last, and this shouldn't be minimized by talking about 'how far we've come' as if 'we've arrived.'

No matter what happens, these two men have changed history and changed how gay people see themselves. But, I want him to win. I think he's a deep and thoughtful man. I believe he would be an awesome president.

Homophobia, however, can look like reasoned debate.

"He is so light on policy." Um, it is possible to be gay and to be profoundly ready, we 'light loafered' people aren't all ditzy with glamour, Buttigieg's policies and proposals are easy to find and are well thought out solutions to the problems faced by his country.

"He can't make his voice heard." After debates, where he has put in strong performances, often the wrap up news won't mention him at all. They will focus on other candidates as if he weren't there. It's as if a distinguished and erudite gay man isn't worth mentioning. But his voice is being heard, visit Team Pete in any of its iterations and you'll find people listening, and amplifying his words. And anyone really paying attention should notice that some of his early rhetoric has made it into the mouths of other candidates who by claiming it as their own when they speak, lie.

The likelihood that this will be read by either of the Misters Buttigieg is very, very, small, but if they do, I want them to know that to a elderly, disabled man in Canada and his husband of 50 years, you are changing more than America, you are showing what gay courage means every day you rise to fight your battles.

And we thank you for it.

What I Did At Work

I am a believer in fiction. In the power of stories, true or not, to change our lives or change our perspectives.. I have a friend who only reads non-fiction and believes that non-fiction books are 'education' and what I read is 'entertainment.' But we've dropped the subject between us because neither was budging.

Books, movies, comedians all use the power of stories to open different pathways in your mind. When Joe and I went to see "The Peanut Butter Falcon" an entirely fictional story, I wasn't expecting to laugh, to cry and to learn so much. The movie which stars an actor with Down Syndrome grabbed me right at the start and in telling the story brought me face to face with vestiges of ableism that I had tucked away, hopefully out of sight.

Arriving at work the next day I began the process of turning this movie into a training opportunity. In the end we had nearly 30 staff come to an early afternoon viewing of the movie and then we all trooped back to the office for a discussion about what we'd seen, felt and learned while watching the movie.

The movie touches a lot of emotional chords and it was easy to see that people were deeply affected by what they'd seen. We heard a lot of voices and a lot of perspectives and soon we were learning from each other as well as learning from the movie.

It was awesome.

On top of that, we are an organization that serves people with disabilities, we near filled an empty theatre to see a new kind of disability story, supporting this kind of movie in any kind of way is certainly part of our mission vision and values.

I had a good day at work.

Opening My Mail

I had been requested by a woman with Down Syndrome that I had come into acquaintance with to attend a meeting with her father and her sister. Her mother had passed away a few years earlier and the passage through grief had brought them all closer together. There was resistance to my being there, but she was a strong self advocate and stood her ground. Besides herself there would be her family, a social worker from her agency, and me.

The topic?

Love.

Or more accurately, love with the possibility of sex.

As a young woman she was romantic. She dreamed of a boyfriend, of a wedding and of a life beyond that with the man she loved. These dreams were tolerated, not supported, until she met a man. She was in love. That's where I came in, she knew that I had worked for many years in sexuality and that I believe that people with disabilities have a right to a full adult rights.

When I was introduced to her dad, all he said was, "I googled you."

Immediately I wondered what he had found, I hadn't done that for a little while. But he would find what he would I'm not ashamed of my body of work.

The meeting went as anticipated, except for the fact that I had nothing to say. She had invited me to help speak the case for love, but she was doing that just find on her own. She knew what she wanted and she knew she loved her boyfriend and she was determined that this relationship would grow.

Father and sister were equally adamant that the relationship be stopped 'before more harm was done.' She clearly couldn't handle an adult relationship and didn't understand the full implications of love.

It all ended with her bursting from the room in tears. 'You talk, talk, talk, but you never listen, listen, listen,'

It was now that they all looked at me and asked me for a professional opinion. I said that the woman who had been at the meeting, the woman who had plead her case, was articulate and clear about what she wanted. She wanted love from her boyfriend and she wanted the relationship to be supported and celebrated by her family. In no way did I notice a deficit in her ability to be family.

I asked the dad one question, "Wasn't your daughter born with a hole in her heart?"

"Yes," he said, thrown by the change in topic,, "but she had that fixed."

"Oh," I said.

"What do you mean 'Oh'?" he was annoyed.

"Well, I'm wondering why you want to put another hole in her heart? It seems like you are upset because it's working properly."

I was asked to leave.

Yesterday's mail brought me an invitation to her wedding.

Grey Matter

Several of the hotels that we stayed in over the last few days on the road to and from St. Louis had renovated or 'updated'. They all looked great, but looks can be very deceiving. In the first one I got off the elevator to turn towards the room and sank into porridge soft carpet. I'll bet it felt good to walk on if you were fully able to balance. But the wheelchair protested every inch. My shoulders were screaming by that time I got to the hotel room. The first time, Joe stood at the door holding it open but I asked him not to because it was disturbing to see him slowly age in front of my eyes.

That was hard! I said using a lot more adjectives.

The same was true of every updated hotel we stayed at, the carpet rose in opposition to my presence, my wheelchair sometimes groaned under my effort. I didn't let Joe push because if this is the new norm I need to be at a new norm. Fun, wow.

It was good to get home and back to being able to push easily. But on our first day back we went to buy patio furniture and I asked a clerk a question. I could tell immediately that he didn't want to deal with me, he looked for and found Joe and headed to him to answer my question. I am assertive in these situations and pointed out that he would deal with me, I asked the question. Getting the information out of him was like rolling across the soft grey matter of his brain.

Give me bad carpet any time.

Theft

We were having lunch at a small cafe in a mall near the hotel in which we were staying. The food court was a few feet down and around the corner from us. We we chatting over our meal when Joe's face froze. He said quietly to someone other than me, "Put the fucking phone away."

I turned to see a woman with a disability trailing behind her staff who was walking far to quickly and whose face was in her phone. If she had put her phone away she would have noticed that the woman with a disability was having a great deal of difficulty with the pace that she had set. The disabled woman's face was flushed and sweaty. The effort she was making to keep up and walk beside her staff showed all over her expression.

She never caught up to her staff. Not that we saw anyway. She was about 4 feet behind her. Her desperation to be with the staff was lost in the staff desperation to be somewhere else, somewhere where 'likes' from strangers were worth more than the 'would like to walk with you' from the woman with a disability.

People were watching.

They saw an uncaring staff whose message of "I can't be bothered, even for pay, to spend time with the likes of the woman with me." was strongly delivered

They saw a disabled woman whose message of "I want to feel involved and included even by those who disrespect me." looked pathetic and weak.

Everything was wrong with what we saw.

Everything.

After some thought I realized that that staff was thieving from the agency that hired her. She was thieving from the woman with a disability who probably waiting for this 'outing' and was desperate for it to be fun and fulfilling. She was thieving from the community that witnessed this, a community that should have been learning that disabled people have value and that staff provide a service.

Agencies may be very concerned about petty cash and how it balances.

They should be more worried about the theft of time and dignity from the people they serve.

Time and dignity.

That's what she stole.

But I'll bet she handed in the receipts pronto.

The Wrong Ramp

We'd had dinner in a packed restaurant, with waitstaff that had no idea how to sit a disabled customer, and were on our way out. I came through the / doors and saw that a huge truck had used the cut curb to pull back up into a parking space to unload and store equipment used in the water show that was happening just off the docks beside the restaurant. I could see that a young man had been assigned to watch over the equipment so I headed over to speak to him.

But that's not the only thing I was doing right? I was stoking the fires of injustice and feeling the violation of my space, the only cut curb anywhere near where we'd parked the car. So by the time I got to him I was in fight mode. I told him that the truck was parked over the disabled access point and that I couldn't get to the ramp. But as I spoke there was a roar from the crowd attending the event and he smiled and said, "No I don't think I can let you do that?" "What," I asked.

The truck had a long and steep ramp, used to assist with getting the equipment on or off the ramp. He repeated himself laughing as he said that he didn't think he could let me try rolling up the ramp.  I said, "No, no, I was saying that the truck is blocking the accessible ramp and I can't get down to the car. "Oh, sorry," he said, "give me a second to organize and I'll move the truck right away."

And he did. He kept giggling about his mistake and kidding me about actually trying the steep ramp. There wasn't a moment where I felt that he was resentful of all the work he had to do to move the truck. He had to move equipment that was leaning against it, he had to disassemble the ramp, he had to tie down some of the stuff in the truck. But he did it in good humour and I didn't mind waiting in an atmosphere of 'I got it, I get it, I'll do it.'

And, of course waiting there allowed me the time to put out the fire that I'd set for a fight that I didn't need to have. But you can't tell before hand, can you, when it's going to be needed.

The truck was moved, I got out, he called after me, "Sorry, man, thanks for your patience." I gave him the thumbs up sign because it was all good.

Late Lunch

We got to the restaurant a little later than we had planned. But what's a vacation for but to make plans and then freely set about to mess them all up?

We were greeted by a woman with a disability, she used a cane for stability and for assisting with movement. She was warm and friendly and set about setting up a table for 5, all were set for 2 or 4, with skill and ease.

The most important thing to me was that she set it up exactly right for my wheelchair. No muss, no fuss, no notice, just an accessible table whipped up for us.

I don't know if her disability played into how she provided service, but I'm guessing it might. And right then I was really thankful for her and her skill and her competence and her welcoming attitude. It isn't always so when I'm out.

There are those people that seem to be set in the way of your life, those people you are destined to run into, those people who you will never know and, after a few minutes, never see again, but those same  people can have a real impact on us and our lives. She showed me it's possible to be seated in a restaurant without show or complaint. No one noticed what she did. And that's the point. No one but me, and that, for today was enough.

X-Ray Pants

This morning I had to have an x-ray, a great way to start a vacation, and, yes, everything is fine. We arrived to a long line up and a sinking feeling that we'd be there for hours. Turned out that we got through the process faster than we did at the drive-thru at Harvey's We registered, sat down and were almost immediately called in.

The technician asked if Joe could come in case I needed help she couldn't give. I agreed and we all went into the room. While I was still seated she explained what I had to do which included taking off my shirt and dropping my suspenders (or, in England, braces). I was scheduled for two, one taken with my back to the machine, one taken to the side.

The first one was easy to do because I could hold on to my pants, preventing them from falling to the floor, while in the position she wanted. The next one was going to be more difficult, I needed to have my hands up holding on to a grip she installed. This meant that I couldn't hold on to my pants and that they would definitely fall.

I asked her if Joe could hold my pants up while the picture was being taken. She 'leaded him up' which meant that he had to put on a costume that made him look part samurai and part Dirk Bader. He stood behind me, grabbed my pants and for the first time in our relationship held them up.

It was hard getting an x-ray while wanting to laugh at the absurdity of the situation. Disability can be a deeply funny way to live. 

Vacation

Today we begin a week's vacation. Our hallway is lined with suitcases. Packing is nearly done. This is all stuff that Joe does and I am the exceedingly grateful recipient of his expertise. This means that I get to sit and do nothing while he makes satisfied noises every time he remembers something he was determined that he'd forget. It's just what we do.

It is my job to make the reservations and ensure that we get what we want and need. This is made easy because the staff at the hotel remember us, know that I'm a wheelchair user and work to ensure that the whole process is smooth and that my only experience at check in is 'Welcome Back!"

They have the art of customer service down to an art. To a one the staff there seem to want to make everyone feel at home. They seem to realize that, because we need adapted rooms, our needs don't call for adapted interactions.

So when I called last night to reassure myself that all was okay, I knew that it would be. And it was. I didn't have to talk toilets to strangers. (And I bless them for that.)

After breakfast we will move into getting out of here and into there.

I am so looking forward to this!

Love Need Not End

A very, very, very long time ago I wrote about seeing an elderly woman being supported by her son with Down Syndrome. She was a wheelchair user, something that at the time seemed new to her, and he carefully guided the chair around people and other barriers. I wondered, then, if she ever, when he was born, imagined a time where he would not only be her world but allow her access to the world.

As it happened Joe and I were back downtown pushing through the mall where we used to see them. I had forgotten them, busyness and preoccupation can push everything else aside. We rounded a corner and there they were. They were sitting at a coffee shop enjoying the holy trinity of Tims, a chat, a coffee, and a doughnut.

Something was different this time though. He was not alone. He was with a woman who also had an intellectual disability who he loved calling his wife, she in turn used the word husband at every possible opportunity. His mother watched them as they chatted with each other and with her. They had done everything. Gotten the coffee and treat, found the table and made a place for her at it.

She looked so happy.

So deeply happy.

He was loved. He was loving. She had always known he had this capacity. But now he was using it to build a life that would outlast her.

I have met parents, a few, who refuse to allow their children to grow into adults who have relationships. I have met executive directors of organizations that have policies that disallow love burying it under a log jam of policy.

What they fear, what they forbid, is what freedom does.

She looked so happy.

So deeply happy.

His world was so much bigger.

Her loss will be keenly felt, but it will not mean the end of love for him.

Struggling

I sat down the other day to write a post, but I just couldn't bring myself to it. This is pointing to a problem I'm having with writing this blog.

Here's what happened that I was going to write about.

We were off the plane, home again in Toronto, and on to get the rental car that would take us home. To get to the rental car I need to get up a long, carpeted, ramp. What I typically do is get near the moving sidewalk and when ready, grab it. It pulls my right arm and with my left I push my right tire with my right arm. It's a bit of a dance of dexterity but I know how to do it and even enjoy doing it.

I was riding/pushing up the ramp when a woman came careening at me and grabbed the back of my chair before Joe could intervene. I lost control of what I was doing, my right arm nearly got pulled out of it's socket and I'm hurting. She kept, against our protests, insisting on pushing me and she simply wouldn't let go. It's getting a bit loud and now I'm the center of everyone's attention. In situations like this no one gets why I'm refusing help. Everyone assumes I'm an asshole.

Finally we got her to let go saying, (say it with me) "I was just trying to help." Then, before I could answer she continued, "I saw you struggling and just wanted to ease that." At that point, I gave up, I hadn't been struggling, that means she can't see me, she sees what she wants to see disability being the Rorschach test for how people see difference.

But I couldn't write this because, um, haven't I told this story a thousand times before?

Isn't everyone tired of hearing me go on about it?

You see it's the sameness of the experiences that I have as a disabled person that weigh me down, much moreso than an individual incident. I can predict this is going to happen several times a week.

Given the sameness of the experience, how do I write this in a way that's new for you. Every single day that there hasn't been a blog written, there was a blog to write - but I don't want to bore you.

So, I'm struggling.

JOB?

I would never feel comfortable doing a job interview in a coffee shop, but these are modern times. Two fellows met and clearly they had known each other in school. The applicant laid it on a little thick with the 'bonhomie' that came with past acquaintance. The interviewer kept good boundaries but was distinctly cool in his response to the warmth flowing his way. They sit. Neither has a coffee. 

The first question?

"This isn't on my list of questions for the interview today, but I want to start with it anyways. Are the words 'fag' and 'retard' and 'bitch' still in your vocabulary for interacting with people you feel better than?"

If they had had coffee that moment would have frozen in the cup.

Apologies toppled over a desperate plea for employment. The applicant looked destroyed but acknowledged it had been a fair question.

"I'm not that guy anymore," he said.

"Good, because I'm not hiring that guy, lets go through the rest of the interview."

What followed was a typical interview.

"Am I going to be considered for the position?" he asked.

"Yes," the interview said, "but I have to really think about it."

"That's fair."

"More than fair!" The words slipped out of my mouth without me being able to stop them, the two of them snapped their heads over to see me. 

I just waved and pretended to look at the paper.

Just One

We had arrived early at the airport for a flight that would be delayed. Rah! We wanted to grab breakfast and decided to go to a restaurant rather than a fast food place and we found a spot and then found a table therein. There weren't many there, the prices where prohibitive. But there were two men a couple tables over from us and across a small aisle way, talking loudly. They seemed very used to taking up a lot of space.

It began with one of them going on about his wife who had put on weight and how disgusted with her and didn't want to touch her. We all heard him. We knew he was speaking to the room. We knew he felt he had the right to speak to the room. His friend urged him on, throwing in sexist, misogynistic, fat shaming remarks that the both found funny. No one who heard them cracked a smile.

Then they moved on to a work colleague who they had dubbed 'The Retard.' I froze. I looked at the table it was the man who had added jokes to the hateful diatribe. I was trying to figure out what to do when two more customers arrived and were waiting to be seated. I turned around to see them and one of them was an older woman in her wheelchair. Her eyes were burning holes through the fellow who had just spoken.

When the hostess came and asked them where to sit. In an empty restaurant she pointed to the table right beside the two men. The hostess tried to dissuade her telling her that there were many open seats. "I want to sit there," she pointed and then began to make her way to the table.

The two men looked very intruded upon. The restaurant was near empty and this woman in a wheelchair and her friend were seated right beside them.

The two men fell silent.

She shut them up.

She made the whole place safe.

She won.

It only takes one warrior.

Just one.

My Place

"He just doesn't ... doesn't ..." pauses to search for words, "know his place."

That's not where I thought this was going to go. It was the standard situation familiar to many of us with disabilities, someone had offered unneeded help which I had politely declined.

Cue offense.

Even though I had cheerfully said, "No, I'm good, I've got it." Even though there was no hostility or impatience in my voice, I say this acknowledging that I'm not always good at handling these things, but this time, I was.

"I was just trying to be helpful."

God, spare me from another of these conversations. I really don't want to ever have to talk about the emotions of those who assume that their help is a gift and my rejection is rude. I really don't want to have to rebuilt the egos of those who, wishing to gain from my perceived need. Please not another.

I explained to her, and the woman with her, annoyance had made them twins, that it's important for me to do what I can for myself.

My need didn't matter.

Resulting was the comment one to the other: He just doesn't know his place.

And what place would that be?

Disabled people don't exist for the general public to get warm fuzzies from our gratitude for their time and attention and assistance.

I don't exist to meet the needs of anyone but my family and myself.

My place isn't segregated into the barren wards that exist in the minds of those illiterate in the nature of disability.

My place isn't to be a man-child lifted into worthiness by the time and attention of those who cuddle at night with disphobic hierarchies.

My place is here.

This space is mine.

And, for fuck sakes, no means no.

Popcorn

So.

This happened.

We went to see "Spiderman" and, unusually for us, we were a little bit late. We can't get our tickets from the automated stations because we use the Access2 card and need a real person help us do that. I spotted a young man at the popcorn station, a place where you can buy tickets as well, and we headed towards him. He knows the system really well and is able to process us through really quickly.

As it turned out the showing that we were going to required us to choose our seats from a seat map. Joe and I both roll our eyes at this ... it's a movie. The fellow showed us seats that he'd chosen for us, like he does for all customers, and when I looked I saw that it was in the middle of the theater and up several stairs. I said to him from my wheelchair: "Um, I'm a wheelchair user. I need the accessible seating."

He burst into a blush and an embarrassed grin.

"Ooops, my bad," he said, and then set about choosing different seats.

And that was it.

That's all that happened.

There is no more to tell.

What didn't happen was more significant than what did.

He didn't get all flustered and apologetic.

He didn't make a big deal about it.

He didn't draw anyone's attention to what was happening.

He didn't make himself the hero of the story.

He didn't make himself the victim in the story.

He didn't me into a victim of my disability.

He didn't do anything other than correct a simple mistake.

Isn't is marvelous when sometimes a disability is just a disability and not a reason for spectacle.

Morning

I get up first.

Pretty much every day.

I like mornings.

This morning I stepped by the fan that was attempting to circulate cool air into the bedrooms and headed towards my desk. I noticed then a little girl solidly asleep on the couch, covered in a light blanket, her face lit by the brightness of the morning. She looked as if she was safe and at peace as she slept.

Dancing beside me was a dog, a big one, waiting on her morning treat. She loves to get up with me and she rushes to my desk where she sits and waits for me to arrive. Her eyes flick up to the treats up on the top shelf, she wants me to know that she knows they are there, she wants me to remember the morning routine. I toss 4 into the air and she deftly catches all of them. Ritual complete she slips away to lie on my side of the bed.

I go through emails and check on a few things that I need to keep up on and then decide to go back to bed to read. I walk by a bedroom door that had been pushed opened by the dog on her rounds on her way back to bed. I see another girl, slightly older, sleeping on her back with a slight smile playing about her face. I wave, she doesn't wave back. She's dreaming of something that makes her happy, that enriches my morning.

Coming back into my bedroom to read I find the dog fully stretched out in my place. Joe is on his side of the bed still soundly asleep. I get the dog to move and pick up my book to read.

***

And people thought my life would be lonely as a gay man.

And people thought my life was over when I became disabled.

***

Life brings gifts to all of us.

Even those thought undeserving.

***

The quiet happiness of a Saturday morning.

Takes all shapes.

***

Even mine.

The Killer

Yesterday we paid $25 for just over an hour's parking.

YIKES.

Both Joe and I had an appointment with the doctor, we both go in together and even though the Doctor listens to each of us separately, it's like a real family visit. For example when the Doc had a question about my cough, he asked Joe to comment as well in terms of what he's noticed. I like the feeling of being treated as a legitimate couple who live legitimate lives together - even though we've just celebrated our 50th anniversary we find our relationship is never seen as 'real' as our heterosexual counterparts. All this to say, it's nice, but it's also not what I'm wanting to write about.

When it came to me the doctor laid out two possible courses of treatment, the risks and benefits of both AND the research behind the approaches. You can tell he's also a teacher, teaching at the local university, because he is able to lay out information in a manner that's easy to follow.

The reason he went into the detail was because he said that he felt that I was in the best position to choose which course I'd like to try. In fact, even before he said that I had decided which one made sense to me and was going to advocate for it ... but there was no advocacy necessary.

We talked about it a bit more, and we were done.

Our doctor has always made sure we were fully consenting to whatever treatment he was offering, he has always made sure we understood the approaches suggested and some of the research behind the recommendation. We've always felt in the driver's seat.

But this time was different, more overt, I'd guess.

So, we paid the parking fee and drove away. It's worth every cent.

We get our health care for free but the parking can be a killer!

A Destination and A Companion

It was sunny and warm and we were on a mission. We wanted to find a particular restaurant that we knew was somewhere near by. The street was crowded with people going, it seemed, every which way. We got out of the flow of pedestrians and tried to figure out which was to go. Once we had it figured, we set off.

I saw him almost right away, he was about half a block away and headed our way. He was a homeless man who had a shopping cart full to the brim with everything he owned. I paid attention to him only because with my chair and his cart we both needed to ensure that we had the room we needed to pass each other.

He did not see me until we were only a few feet apart, I know this only because I saw him see me. (Anyone who is different knows what I mean here.) His face changed into something akin to anger. And he charged me aiming his shopping cart right at me. It was only seconds before he was about to hit me, I saw the charge and waited until he was close enough that I could grab the front of the cart and veer it forcibly off to my left and away from me. It worked.

I sat there shocked.

I said to Joe, "That guy aimed right at me, he wanted to hurt me!"

He heard me and spun round and started to call me a 'fat fucker' and a 'God damned pig' and a 'lardass motherf#cker.'

I didn't like having those names shouted at me, nor did I like how they echoed between the large buildings around us, it was like the air agreeing with him. I didn't like how it drew everyone's attention, not to him but to me. I didn't like feeling what I was feeling about him.

I hated him in that moment.

I'm sorry.

But I did.

I know, or am guessing, that he has a mental illness, that he has a hard life, and I know that should matter to me in how I assess what happened and how I felt about it. I know that I should be working towards some kind of sensitivity to him and his situation. I can't imagine the life he lives. I know that.

I've waited for several weeks to write this. I thought that, over time, I would feel differently and be able to write a different kind of story.

And I know that I should.

But I don't want to contrive to be here in print who I'm not as I type this.

I have history too. I have hurts too. I don't want to compare and contrast with what his might have been, I'm just saying that I do. I have been a target for most of my life. I've heard words like that for all of my life. And they hurt me. They are words with sharp edges and their job is to cut, and to say they don't is to deny the existence and experience of both the dart and the board.

Joe put his hand on my shoulder and we turned back to our quest. At that moment I was so grateful for both a destination and a companion.

Two things that I have needed my whole life long.

Grandma's Trust

(first appeared in Canadian newspapers in 2011)

I was having a pee.

Thinking about my grandmother.

Thinking about my country.

We'd driven almost 300 kilometres through the wilderness of Northern British Columbia. That is to say, it was a long pee.

My grandmother was born in Canada in the late 1800s. In all ways she was a remarkable woman. She made the hard life of poverty and subsistence farming into a warm life of laughter, card games and home-fried doughnuts. She was a woman that I was always close to. I think I trusted her love of me more than others around me.

One summer I was staying with her in the old homestead. A barnboard shack on a gravel road. The family dreams lay like rusted dinosaurs round the property. Threshing machines that never threshed and tractors that never left a track. Big, hulks, that frightened and fascinated all the grandchildren. But inside those oddly clean sparkling windows, the light was warm. Inside the doors, the spirit was welcoming. That summer, I asked her a question. We had been studying in school the history of Canada. I had learned, with a shock, that at one time in Canada, in CANADA, women were not legally persons, that women could not vote. I had been stunned by this information.

I asked her to tell me about those days. She did. In stark detail. She said, "If you are old enough to ask the question, you are old enough to hear the answer."

She had married lucky, she said. A comment that might have seemed at odds with the surroundings of a life without riches. Water was pumped into the sink with an old hand pump, towels were stuffed around doors for insulation. But her husband, she told me, was never a violent man. He had loved her gently and respected her unceasingly. Other woman, many women, were not lucky. Their men, abetted by the society in which they lived, treated their women with less care than the cattle in their barns.

Women of her class, she said, never thought about the vote. They thought about survival. I asked her, hushed by her tone and battered by her honesty, how she coped.

She gave an odd answer: "Canada."

I asked her what she meant. She said that she always trusted that her country would get it right. That a young country would grow up. That one day a woman would be protected by law, not luck.

"Trust this country," she said, "it wills to grow and change."

It will not surprise you to know that my grandmother was the first to know of my sexuality. A woman of deep faith, she felt that the call to love me was stronger than the call to damn me. So she did. I was her gay grandson, that was that.

Once when telling her that I feared for my job, for my safety if others found out about who, and what, I was. After listening to me and consoling me, she said, "Trust Canada. Give your country time to grow. It will. It will because it wants to."

And it did.

Years later, I am driving long distances along a highway I had travelled in my youth. In those days the rest stops were barely more than "intensely rustic." I suddenly had to pee. We watched for a rest stop. Being a wheelchair-user now, rushing into the bushes is out of the question. I was terrified of what I'd find. Those rest stops in my memory were forbidding for those who walked. But we pulled into the stop and saw, proudly displayed, the blue wheelchair guy. I rolled easily to the door, and had the dignity of travelling in dry pants.

Canada.

I trust this country.

It grows.

Even when you aren't looking.