Wednesday, January 01, 2020

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.

Monday, December 23, 2019

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.

Sunday, December 22, 2019

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.

Saturday, December 21, 2019


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.


Gratitude is mine to give.

And there is power in withholding.

Thursday, December 19, 2019


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.

Wednesday, December 18, 2019

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.

Tuesday, December 17, 2019

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.