Thursday, February 11, 2016

Hard On Purpose

Image description: The word 'HARD' in black and white block letters
This will take some describing. We were unable to get a picture because it was so freaking cold! I'd gotten out of the car and had turned my manual chair to face the door we would enter. As I mentioned in an earlier post, everything was in the wrong place. The curb cut was centred between two lovely large doors, however when the doors opened the door jamb that separated the two entrances came right down the middle. It would mean a quick push up a fairly step curb cut and then an immediate right. Why right instead of left? Well it's because the auto door open was way over on the other side of the left door and was set to open the right door. They must figure all disabled people have massively long arms, (All the better for hugging strangers who need to feel better about themselves.)

I said something to Joe that has been bouncing around in my head for a few days, "Sometimes I think they make it hard on purpose." I knew that I had heard that expression at a different time in a different place, and I knew that it was something that I had found important, had learned from.

After a while of chasing for the memory. I gave up. Memory doesn't like to be pursued, I find as I get older, it likes to show up at it's own time and pace. So, as I said, I let it go.

I saw a couple, downtown, walking together through the mall, she had Down Syndrome and he Cerebral Palsy. He drove his chair with a kind of scary, shaky skill, and she walked beside him with her hand resting lightly on the back of his chair. A lovely intimate scene.

And I remembered.

It was many years ago, I had been called to consult on a situation where a man and a woman had been separated by their support team because they were concerned that, as they had a disability, they were unable to consent to sexual behaviour. That they each lived, on their own, with minimal support didn't play into their figuring at all. To prove their point, one of the staff had developed a sexual consent test and both of them had failed. But, good for them, their persistence paid off and I was called in.

After meeting with both of them in turn, I felt it odd that someone would think they were non-consenting or that they weren't able to consent. They were very capable people and, in chatting with me, knowing it was about sexuality and relationships, they both seemed determined to prove to me that they knew what was what and what went where. They both said, with great emphasis that the test they took was unfair. The agency was really loathe to share the test with me but I insisted, couldn't do a report without it you know, and I was shocked when I saw it.

It was handed to me by a secretary who popped into the room where I was meeting with both of them. I began to look at it and my face must have changed in some way because the fellow said, "They make it hard on purpose." And, they had. There were words like coitus and fellatio and zygote ... words that I have never used in any sexual context at all except in situations like this when I write the words for some purpose. Sexuality is a plain language subject if anything is. No one ever says, "Would you like me to perform fellatio before we engage in coitus?" No. One. Ever.

I took the test, translated it into plain language, this was before the plain language movement, by simply using words that were easy to understand. They passed with flying colours.

They make it hard on purpose.

Another memory.

I had just started working in the field and a woman was running a bed making program on a (not with a) woman who lived in the home. I was new so I was shadowing staff, agencies should be really careful about this approach to training, and I watched the woman undergoing bed making training quickly and efficiently make her bed. She was told that she had failed to meet criteria because the pillows weren't placed properly. I was surprised because I figure if they are at the top of the bed, they are in place. The woman being trained looked deflated.

The program had been running for a couple of years and while she could make a bed, she hadn't met criteria. I asked the staff who let me in on a secret - set the criteria really high and you can keep a program running for years. If the program succeeds you have to write another one. This way was easier.

Oh.

Wow.

Great training.

They make it hard on purpose.

I wonder how much of this goes on. People with disabilities being kept from sexuality or relationships or free community access or job opportunities by people who have made entrance hard on purpose.

I think back to that door. I think back to how easy it could be for me to have gotten in. Instead, Joe ran pushed the door opener then ran back and helped me up and then a quick turn to the right to get into the door before it closed on us. It could have been easy. Really easy.

But it was hard.

I'm not sure if it was on purpose.

Or if that even matters.

Wednesday, February 10, 2016

Freedom?

Image description: Angie Nethercott and myself posing beside each other each holding a framed award. 



Last night at the banquet hall of a large hotel here in Toronto, Angie and I represented our respective agencies, Hands The Family Help Network and Vita Community Living Services as we received an award for the Direct Support Worker newsletter that we co-edit. It was nice to receive the recognition but it was even nicer to roll around and chat with people, some of whom I have known for 30 years and hadn't seen for 29. Catching up with people, seeing how they are doing and where they are now in their lives was so much fun. Neither Joe or I are highly social people but we both talked and laughed and 'made rather merry.'

So, before the awards were even handed out, we'd had a great time. Both Angie and I ate our meals with a bit of anxiety because it's not easy to get up and get an award and say something meaningful in just a couple of seconds, I freely admit that Angie managed that much better than I did. But we got the award and were able to thank our agencies that support our work on it and continue to believe in the importance of making the information freely available.

I don't often use WheelTrans for other than going to work. I don't often stay up after 8. So I was tired when it was all over, well past bedtime, and we waited in the lobby for the bus. When it pulled up we went out and were loaded on by a driver who was fast, and fun and funny. We were out of there as quick as safety allowed.

There was already someone on the bus heading off somewhere and on the way we stopped an picked up someone else who had been out for dinner with friends. Everyone was quiet on the bus, including Joe and I, all alone with our own thoughts. I was thinking about the evening and how nice it was to receive recognition for the work that we had done. On the top of the award were the words, "Making a Difference." I hope I do. I think we all hope we do.

When we arrived at home, the driver was equally quick and equally funny when getting us off the bus. Joe got off first and I followed. Once down the ramp I turned to him and said, "Thanks for doing what you do, you make my life freer." He looks startled and then said, jokingly, "We're all free, man, we're Canadians." I was on my way into the building as he said this so I just waved and continued on.

But I had meant what I said. His job does make me freer. People need to understand that though work in any kind of human service is a job, it is work, the work has a powerful meaning. In fact, his service does make me freer. WheelTrans isn't just a company, it's a company that makes a city accessible, it grants a freedom to people with disabilities that we wouldn't otherwise have.

And Canada may be Canada but there are many who are not free. Many who still live in institutions, many who, because of lack of services or support, don't have a freedom of movement, many who, in one way or another, are held captive for the crime of needing supports.

I hope he thought about it.

I hope all that do the work to free people, to make community, to create change remember that we are in one huge vast civil liberties movement. We are continually working towards a better freer society. Canada, indeed there isn't a single country in the world, that is presently free ... and no matter how loud we sing our anthems proclaiming our freedom that won't be changed.

But what he did made my life freer.

Because freedom comes in the doing.

Tuesday, February 09, 2016

A Visitor Comes To Ruby's School

Image description: A blackboard, surrounded by an orange border with the alphabet inscribed on it and with an apple and a pencil at the bottom right corner. On the blackboard in white letters are the words SCHOOL DAYS.
I was on the phone to her mother when Ruby arrived home from school. She called out, "Is that Dave and Joe?" Her mother told her that it was and, I think, was just as curious as to why Ruby was so excited. A call from us isn't uncommon but her excitement over it was. She came rushing on the phone.

She started, "I told my teacher about your blog!" she said, and then stopped herself. We've been playing this game for quite a while now, as I am a story teller, and the girls like hearing 'Ruby' stories, or 'Sadie' stories ... I want them to tell me stories too. So without even prompting, Ruby took a pause and told me a story.

"At school today we had a visit from a boy and his mom. He had a disability and he talked to us about what happened to him. He had something happen to his brain and he was in a coma for a long time. Now he has some tubes and he told us about how the tubes have to be changed really fast when he goes to bed. His mother was there too and she showed us how some of the things worked. He was really nice and it was fun to listen to him. When it was over, I told my teacher that you had a blog and that you write about being in a wheelchair. I told her that she should check out your blog and that she can even watch you get married. She said that she would read your blog."

So, in the happenstance that you are visiting to read my blog, welcome Ruby's teacher.

Ruby and I talked a bit more with Sadie filling in from the background. She was really glad that they had had a visitor come to the school and to talk about disability. I remembered back to Ruby's first day of school, when she went to Junior Kindergarten. I asked her that day if there were any kids in her class who used wheelchairs. She sighed a deep sigh and said with great disappointment, "No they all just walk." Ruby likes and welcomes diversity and notices it's lack.

It was a fun phone call, I was pleased and proud that she wanted the teacher to read my blog and that she recognized that the young boy in her classroom, talking for himself about his disability and me here writing this blog about my disability are members of the same community. That she sees the community and sees the connection pleases me no end. So many refuse to acknowledge the community, the kinship and the connection between disabled people - even many with disabilities, that her immediate, without question, ability to see how what that boy did there and what I do here are connected.

We rung off with Ruby's excitement in my ear.

Congratulations to the school for creating this opportunity for their students and for their visitor. Congratulations to the boy's mom and if I may speak to you for a second let me tell you why ... because Ruby spoke of you and your voice too but primarily she spoke of your son and how he represented himself, that is remarkable parenting.

Change comes.

Monday, February 08, 2016

Over Easy

Image description: A yellow ball with the words 'over easy' the over is written upside down and placed atop the word easy.

On Friday, my mind was full of concerns and questions and worries. Joe and I were driving off to the hotel where we would stay the night before the Saturday presentation to parents. We didn't chat much, which is unusual for us, we rode quietly together. I had told Joe that I was tired, and, at the time, thought that I was telling the truth, I was, indeed tired. But the real truth for my silence is that my mind was fiddling with worries and toying with questions and attempting to find ways through concerns. I may have looked like a man relaxed into a car seat going for a ride, but I wasn't. I was highly active.

When we turned the corner and first saw the hotel, I also noticed a small outlet store about a block away. Joe pulled in to place and said that he'd get my wheelchair out, I asked him if he could just take the luggage to the room and then we'd go back to the outlet store. Joe isn't a shopper, it's not something he enjoys like I do, I could see that he was tired and he didn't want to go but he sighed, he won't admit to that, and said that he'd be back as quick as he could.

Next we parked at the outlet store and laughed at the accessible entrance. They had everything they should have; a cut curb, wide doors, an electronic opener, but they were all in the wrong places. It would be impossible for someone, even in a power chair, to easily make it in, but between the two of us we got in the mall. I started shopping immediately. Joe wandered along with me, and like many husbands, would often sit on a bench in the mall while I was in a store looking at stuff.

We were there just shy of an hour, I picked up a couple of things, got Joe and new shirt for a big event on Tuesday, and we made our way back into the car, over to the hotel and into the room. Once there, I thanked Joe for the trip, and then, I told him that I just needed to be distracted from what was going on in my head. I explained a bit and as I did Joe got this strange look on his face.

He said, "If you ever need to go do something just to distract yourself from stuff like this, just tell me. I didn't want to go and I know that I let you know that I didn't want to go, but that's because  I didn't know it was what you needed. Next time, just tell me."

I agreed.

It is so easy to just stop talking, stop communicating, isn't it? It's so easy to have resentment build where it need not even lay a brick. It's just so easy, years into a relationship, to assume that someone knows what you need.

It is so easy to just stop talking.

It is so easy to just stop communicating.

It is so easy to just assume your needs are understood.

I realized if I don't get over easy, life could become really hard.

Saturday, February 06, 2016

Hello Saturday! It's Meaning Time

Image Description: Test Reading GOOD MORNING Saturday, with flowers and sunshine and bees flying about.
It's Saturday morning and I'm up and nearly ready to head out and do my first presentation of the year. Today it is to a group of parents and I have to say I'm wildly excited about it. I enjoy presenting to parents, especially ones who get up on a Saturday morning and drive somewhere to hear some guy they probably haven't ever heard about, talk about sexuality and abuse prevention. I am prepared and hoping for a lively discussion and maybe even a little bit of friendly debate.

It's been some while since my last lecture, which was in early December, and I've enjoyed the down time at home. In fact it was a bit of a shock rolling into a hotel room last night. It was a 'oh, yeah, this is what I do!' As January is typically a really slow time of year for lectures and training, it's a welcome break from life on the road. Now I've done a few webinars, but I can do them from home, in my housecoat if I want, I don't but I could. I'm still mistrustful of technology and am sure that I can be seen.

As Joe and I settled into the routine we began talking of the places we will go this year, the people we will meet, and what new adaptions we may need to make to our life together on the road. It was a pleasant conversation and we're both looking forward to travelling the breadth of both Canada and the United States.

But, this is the start of a new year.

And I'm feeling blessed to be able to do this work.

I met with a professional, much younger than myself, much smarter than myself, who is mid career and we spoke about what we both do. He said that he's got to a point that he now wants to think about his career in terms of resume but instead in terms of impact. He wants his work to have real meaning. I understand that goal entirely.

I think we all do.

And for me, meaning, right now, is going out on a Saturday morning to talk to parents about their adult children with disabilities.

How cool is that?

Friday, February 05, 2016

A Radical Kiss

(Note: there is no voice over, the only sound is that of a guitar playing gently)

This morning I was on one of the two gay news sites that I visit every day. Both of them were lauding, and rightly so, Hallmark for producing a 'kiss' ad featuring a gay couple. I clicked on to watch the video. I didn't realize how short the ad was and before I knew it the next 'kiss' ad was playing.

I was thunderstruck.

This kiss was radical. Perhaps even more radical than the one with the two men. It features a fat man with the woman who loves him. It's gentle, powerful and holds, for me at least, great meaning.

I'm not used to seeing people who look at all like me on screen. If fat people do appear on television or movies, we are usually the butt of the joke, or a gluttonous villain, or the source of slapstick. But this, this was romantic.

Romantic.

Like he's worthy of love.

Like he's, and I can't type this without tears running down my face, beautiful.

Sorry ... that's all I can write today.

Thursday, February 04, 2016

The Zig Had Already been Zagged



Image description: a set of stairs, viewed behind a tree, that has a wheelchair ramp zig zagging through them.

When we were in Vancouver, out for a walk, many, many, years ago, we came across the Law Courts building  and it was there that I first saw what I thought to be then, the coolest set of stairs I'd ever seen, back in the very early 80's. Notice I said that I thought they were the coolest stairs, I was walking then, so I saw them as stairs with a ramp, I now see them as a ramp with stairs. Life changes vocabulary some times. I was impressed then, as I am now, with the seer beauty and the audacious brilliance of the 'stairs'. Even then, I was in the disability world as I worked with people who had both physical and intellectual disabilities. It amazed me.

Recently I have been seeing similar pictures on social media like the one below, also a ramp cut through stairs:

stairs with built in ramps for wheelchairs. Genius:
People are, rightfully, commenting on how clever this is. It is clever now, it was clever 36 years ago. Yes, 36 years ago. While I am pleased that people are seeing this image and realizing, again, that it's possible to be functional, accessible and beautiful. But it's important to recognize that, even though it is beautiful, the concept is not new. It's a concept that just simply isn't much used.

The ability to do this has been there for a long time.

The will to do it has not.

I drove buy a brand new building, here in Toronto, that has shopfronts on the bottom level. Not only could they have been built to have been easily accessible, some of them have been. Others have a step with an awkward narrow ramp that would be nearly impossible to use.

The choice was there.

For some reason the builder, or the builder's client chose not to take it.

So, it's the will not the way that keeps people with disabilities out.

Never forget that.