Monday, May 25, 2015

Sunny, Sunny, Day

Photo description: A sunflower in a meadow looks to wards the sun.
I am sitting in the sun, reading a book. I am parked, in my wheelchair, at the edge of the sidewalk, to catch the rays. Joe is seated beside me. Behind us is a laundromat where Joe has got clothes washing. My wheelchair is locked. I am firmly in place. My hands hold the book I am reading. Joe, beside me, sitting on a florescent orange chair borrowed from the laundromat, is checking emails on the phone. It's Sunday. The pace is slow.

I feel him coming, I don't know where this sense comes from, I didn't have it when I was non-disabled, but it's true, I can actually feel him coming. I look up from my book and over to him. He's heading straight for me. I don't want intrusion or interruption so I telegraph that to him by going back to reading my book. Though I am reading, I know he is still coming. I am sitting, in the sun, in a locked wheelchair, reading a book, beside someone who is also sitting and engaged in reading an email.

He arrives.

"Do you need help?" he asks.

I look at him. "No, I don't, thanks," I say. I want him to just go away. I don't want to educate or enlighten him. I don't want to engage with him at all. I want ... I want ...

I want to sit in the sun, in my wheelchair, and read my book.

To his credit, when I politely refused his help, he smiled, nodded and went on his way.

I told myself, because I now had to stop reading and deal with the interaction, that he meant well and that I didn't want to punish him for a gesture meant in kindness.

I went back to reading.

But I couldn't.

I realized that if I looked helpless and in desperate need for help, from a stranger, when I was sitting, in the sun, in a locked wheelchair, reading a book beside someone who was obviously with me and capable of helping if help was needed, I would never, ever, ever, ever, be safe from the intrusion and the interruption, caused by strangers thrusting offers of help into my day. That I would never be anything but an object to these people.

An object that has only one purpose, to take help.

I was not a person, sitting in the sun, in a locked wheelchair, reading a book. I was an object awaiting the kindness of a stranger in order to continue my day. I was an object that simply waited, Waited for help. That's was I was. No, that's wrong, there is no 'I' here. 'I' don't exist. It does.

It does.

The thing that waits in the sun for help.

The thing that doesn't read, that doesn't enjoy quietly sitting in the sun, that isn't attached to the person sitting next to it.

"What did he think you needed help to do?" Joe asked, looking up from his email.

"Exist," I said.

Sunday, May 24, 2015

Inclusion in Words

Photo Description: A word blog with the middle words "Be a fan of RESPECT" are surrounded by the words INCLUSION, ACCEPTANCE, UNITY and FRIENDSHIP.

Sometimes small acts of thoughtfulness and inclusion really matter. I worry writing this because, like some other blogs about things that I find hurtful or bothersome, I fear being judged petty. For me it's 116 times more distressing to have people think that something that mattered to me or made me feel all warm inside is, somehow wrong or ridiculous. But, that being said, as I'm writing this you already know I'm going to tell you.

We are in Campbell River visiting family. We both have family here so, including the family we have down island, it's going to be a busy few days. Yesterday I didn't even get into the hotel room until quite late because the visiting started pretty much on arrival. It was fun though, we laughed a lot, chatted a lot and just generally reconnected. We'd been up for a long time but forgot our tiredness in the midst of conversations.

This morning I got up to an email from niece Shannon about meeting up for a cup of tea this afternoon. In the note she told us that she's checked and the place that we were planning on meeting was closed on Sunday but there was another option. She then set about giving us directions to the alternate place.

After the directions were done, she said that we could meet her there or she could come to the hotel and we could "st/roll" over together. I know that, or I'm making a good guess that, as she wrote the word "st/roll" she was smiling. And she should smile. It's cute. I'd not seen this particular play on words and I thought it clever.

That was my first reaction.

My second reaction was quite different. I was really touched. I thought it was more than clever, it was 'inclusion in words' ... it was a nice way of acknowledging that I move differently in the world It was a way of communicating that difference doesn't automatically dismiss togetherness.

In the end I've opted for the st/roll, not because we need help finding the place, but because it's now something I want to do.

Let's go for a st/roll together.

Equality.

Inclusion.

Welcome.

Saturday, May 23, 2015

Not Today

Photo description: On a blue backgroun with a white strip, the word 'blog' is written with a curser arrow pointing to it.
OK, I give up.

I'm not writing a blog today.

We are up, very early, and rushing around to get everything ready for WheelTrans to pick us up and take us to the airport. We fly to B.C. on the first flight out this morning. I took a few moments to sit and write a blog. I knew what I was going to write about but I just couldn't focus, what with Joe running around getting last minute things packed and with me remembering, this and then that.

I need to be able to focus to write. Mostly I write my blog is absolute quiet, actually, I write most of the things I write in silence. Both kinds. The silence around me and then the silence within me.

But it's hard to have silence when you've got a plane, a car and a ferry ride ahead of you all in one day. It's hard to have silence when you are going to see people you haven't seen for a long time. It's hard to have silence when you have Joe saying, "Will you get off that computer and help me, please!?!"

So, I'm sorry.

No blog today.

I'll, no doubt, have 'oh my Gosh' stories from the travel day to day. But I pray for a day, where not a single blog happens to me. I think you get what I mean.

Friday, May 22, 2015

Casting ... What ... ?

Photo description: A poster reading "Vote Yes: Love they Neighbour" over a background of a blue and pink triangle.
Does anybody ever wonder?

Really wonder.

What it's like to be a member of a minority required to sit back while neighbours get to vote on our relationships. Total strangers going into a voting box and determining what the course of your life will be. What it's like to hear the rhetoric around the subject of your relationship, to hear people blame your love for earthquakes and hurricanes and droughts. What it's like to have preachers, who claim to follow a loving God, say that that loving God punishes you for your love and for your life. What it's like to have a lifestyle when everyone else has a life.

Does anybody ever wonder?

Really wonder.

Why they have the right to vote on another's life.

In some societies they throw stones at gay people, in others they cast ballots.

Does anybody ever wonder about that?

Really wonder.

How it comes to be that love is ranked, measured and valued differently.

Why is your love for your partner more beautiful than mine for mine?

Why is your heart, which beats in time with mine, the one that the world dances to?

Why is your relationship sacred and mine profane?

Does anyone ever wonder?

Really wonder.

Why we humans have the need to sit in judgement on another's worth.

It must be a need.

It seems we never turn down the opportunity.

Today, Ireland votes on the 'issue' (it's an issue, think of that, an issue) of gay marriage. We may win. We may lose. But even if we win, I will look at all the no votes, the ones cast, not against gay marriage but at me, and at every gay person they know, and wonder who they are. I no longer fear them. But I don't understand how they could reconcile the act of going to a voting booth and voting about the hearts and lives of other with their belief in freedom and liberty and justice.

Thursday, May 21, 2015

Reviewing, Remembering, Readying

Photo Description: A signpost reading 'Memory Lane'
 I hadn't imagined that getting married would be such hard work. Oh, I knew there was busy work with lots to be organized. But, I also knew that we weren't going big, and that we were taking a fairly casual approach to everything but the ceremony, where we are placing most of our energies. But the 'other' work, man it's tough. I don't know if everyone goes through this, but as we plan and get ready for the date, I have been spending time thinking back over our 46 years together and remembering times, the wonderful ones, the tough ones.

Today on the ride to work I thought a lot about the day I became disabled. When I knew that I wouldn't be walking at Joe's side any more. When I knew that I would need Joe in a different way than I had needed him before. When I knew that being with me would mean that he would never be free of the effects of my disability on his life.

I'm, lucky, I suppose, because I never, once, not even for a moment, thought that Joe would leave me because I was in a wheelchair and because that wheelchair had to be lifted into the trunk. I did wonder, however, if, over time, he would come to resent the work that he had to do and the unequal nature of our relationship as a disproportionate amount of our 'living together' tasks would fall to him. Would I, as people wonder and worry, be a burden to him.

I can write this now, without crying, but only because I'm looking back in time. I'm looking from the perspective of someone who rode through these concerns on wheels. I'm OK. He's OK. We're OK. But I didn't know that then. Then, I worried. Then, I cried. Then, I feared. Let's face it, the worries and fears are real, you never know how a situation will be handled until it's handled. You never know someone mettle until it's tested.

As the bus pulled up to work, I realized that my life, after disability, went on. With adaptions, with losses, with changes and, most importantly, with Joe.

This marriage thing is an interesting journey. Everyone told me about the difficulty in coping with the details, no one mentioned the other work, the hard work, of remembering and reviewing and reevaluating past events in light of the present. That warning I could have used.

Wednesday, May 20, 2015

Political Pants


Photo description: An elderly heterosexual couple both well dressed. He is pushing a bright red, brand new walker, she is wearing matching bright red pants and shoes.
Joe and I met them as they were coming out a door I was going in. I saw them, then waited for them to come through. When I noticed the matching pants and walker, I said to them excitedly, "That's great, that's just great, you look awesome!!" They looked, um, startled. The continued past me and went down the ramp and I went into the building.

I asked Joe to run back to them and ask if he could take a picture. He said, "I'm not doing that, if you want a picture you go ask them." I knew he meant it. I knew he knew I'd asked him to do something I was too nervous to do myself. But I wanted that picture. So I screwed up my courage and rushed through the door and down the ramp and then raced towards them. I caught up to them, called out "Hello!?" and they turned to me and came to a stop.

Words tumbled out of my mouth. I said I hoped they didn't think that this was really weird but I wanted a picture of them. I took a breath to explain and in that pause she said, quietly, "Why?" OK, I thought I going to tell the absolute truth. "I am a writer and lecture on disability issues, I think a lot about disability and disability pride. When I saw you with the new red walker and you," I looked at her then, "with the matching red pants, well, it's so out there. It's a statement about who you are and the love you have for each other and it's about not hiding and about there being no shame in being disabled and using a walker. I love it. I really would like your picture."

He had been smiling the whole way through, I didn't know if it was a polite smile or a real one. When I'd done, he said, "You go ahead and take the picture." She, looked at him, with such love, and then said, "Yes, take the picture." They stood together, as I took a couple of shots and thanked them.

I love this picture.

I love what it says.

I love that they understood that their choice of a bright red walker and her choice of bright red pants were political choices. I love that they didn't think my request was silly. I love that they never questioned, and therefore clearly grasped the idea of, disability pride. I loved that I was asked why and was made to respond. I loved that they listened hard to what I was saying and made the decision to let a writer, lecturer take their picture. I love the life they have together.

Revolution happens in small choices.

Like bright red pants matching a bright red walker.

Tuesday, May 19, 2015

Doors, Voice and Frustration

I'd like to describe two incidents to you and then chat a bit about what happened. So let me take you on the journey of one day of being out while in a wheelchair.

First, we had gone into a grocery store to get something that we wanted to make for supper. They didn't have it, I pouted a bit because it's what I wanted, then suggested to Joe we go to the grocery store we usually go to, even though it's further away, because I knew they had it there. He was totally good with that because, well, he was pouting too. He took the cart back and I followed. I stopped on the way and found some chocolate covered, maple peanuts boxed as Canadian Bear Poo. What a find! We're giving the girls each a stuffed Paddington Bear and thought this a perfect accompanying gift. Joe said he'd take it through the checkout line. I said I'd go ahead over to the other store to get what we needed and he could meet me there.

I got to the store, hit the button for the doors to open. I like this mall because when you push the button both the large doors open and entry is really easy. I come in and a fellow, in his twenties, sees me and holds open both doors. The problem is that the only way to do that is to stand between them and hold them open with both arms. He had ear buds in he couldn't hear me saying, "Could you just push the button please." He's glaring at me because I'm not going through. I can't go through because, obviously, he's right in my way. I'd have to go through him to get through the door because he's standing right in the way. The doors are open but he's in the middle. Finally a woman, closer to my age, comes under his right arm, walks around the door and pushes the button, the doors open wider, freeing him, and he, gives me one more glare and stomps off. I go in the building. Frustration built up inside me to the point that I was almost drowning in it. But I was in, I distracted myself with doing what I was there for.

Advance about an hour.

I am crossing the street, at a light. As I approach the curb a woman begins the back and forth dance - the one that indicates she doesn't know where to stand that would be best for me and as a result she's stepping forward then back. I don't need to do anything because I'm turning and crossing the road, as she is set to do, therefore won't come anywhere near her. When I get close to her I say, rudely, "Settle yourself, I'm turning here too." She said, breathlessly, "I just wanted to make sure you had the room you needed."

We waited for the light.

I had this feeling that I'd just been an asshole. I was rude to her and didn't need to be. Just before the light changed I turned to her and said, "I think I was rude, I didn't mean to be, I just didn't need you to move for me, I should have spoken more kindly." She, again, smiled and said, "Really, I just wanted to ensure you had the space you needed." I said, "I know."

I don't want to turn rude. I don't want to turn into what others would think is a bitter cripple. It's just that I get frustrated, really frustrated with interacting with people helping me, particularly when help, as it often does, actually is a barrier to me getting where I want to go, getting done what I want to do. Sometimes the frustration with one situation will come out in the next situation. I have to try and ensure that I have more control, to make each interaction the first interaction, start fresh every time I approach a situation.

But, I'm finding that hard.

Does anyone else?