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.