Sunday, April 30, 2017

My Wedding Ring

I lost my wedding ring.

We got back to our room in the hotel in which we were lecturing and I pulled off my wheelchair gloves and noticed that it was gone. We searched everywhere. We spoke to the hotel manager and the conference staff and the organization manager and I announced it to the audience, but, no ring.

This whole thing is my fault. Over the past several weeks the ring had become very loose on my finger. I don't know if it's because my hands have become quite hardened to the work of pushing my wheelchair long distances, up impossible ramps and down long carpeted corridors, but my fingers got smaller and my ring didn't. I had said, the day before, that when we got back, I needed to get the ring sized.

Here's the thing though. Neither Joe or I were really torn up about it. We were saddened of course, and then there's the fact that the ring wasn't cheap, but we reacted like we'd lost some thing, nothing more, a thing. It's a thing that is symbolic in its way, but we have lots of symbols. Joe said, "Losing the ring is one thing, losing the commitment would matter. The commitment is still there, the loss of a ring doesn't change that." He had put into words what I was thinking. It had been bothering me that it wasn't bothering me the way that I thought it would.

Having lived together for so long without the ability to get married. Having faced what we faced, without wedding rings on fingers, without wedding bells in a hall, without wedding vows hastily made before the party afterwards, the ring struggled to be anything but a ring.

I hope I don't sound cold here, I was sad. But I wasn't devastated. And we were both reconciled to the lost ring by morning. If it turned up we'd be happy, if it didn't we'd drive away one ring less.

As we were rearranging things for the flight home Joe found the ring I used to wear, before the wedding. It had been tucked away in a pocket of the computer case. I slipped it on my ring finger and we were good to go.

No ring, but still Joe.

I can handle that.

Saturday, April 29, 2017

A Good Tired

The last several days have been exciting, challenging and frightening. I don't know why but I decided, when invited to speak in Minneapolis and Rothschild, that I would do three new lectures, one of the them a full day one. I had grown comfortable with the day long lectures that I do, I was perfectly happy with making small moderation to the shorter lectures, I'm 64, I was into coasting. But there was something pulling me, or pushing me, or motivating me in some way to branch out and challenge myself, to say out loud to an audience what I was saying deep inside to myself. So, months before I would have to do any of these things, I agreed to the topics and wrote up the blurbs for them.

Problem is, what you think is doable in four months, looks a lot less doable and a lot more frightening when time arrives. I kept saying to Joe how angry I was at myself for doing this to myself. It was like back being a novice speaker, getting materials ready and reviewed before going to bed, getting up really early the next morning and rewriting the lecture notes out long hand. Trying to figure out timing and not really knowing if I had enough, too much or if the whole thing hung together.

Every day, after finishing, I would be exhausted. Luckily I always had more material than I needed but unluckily that meant that I never got the 'whole' of the message in, with the exception of the day long lecture. Thing is people don't know what they didn't hear so I got away with it, but I knew what I'd wanted to say and made notes of where to cut and where to expand the next time, if there is a next time, I do these topics.

We fly home tomorrow, being done now, and it felt good. The lectures were well received but more than that, it felt good to get out of my comfort zone and tackle some new issues. The introduction of Disability Informed Therapy, in the day long lecture, for example, gave me great pleasure. Saying what I really, really, really wanted to say about how we approach and understand service to people with disabilities felt so incredibly good. That people responded well was gravy, or icing on the cake, or in my case sugar free strawberry jello.

In doing this I rediscovered something in myself. I was able to remind myself that at 64 I'm still growing and learning, I'm still in need of a challenge and I need to be wary of ruts that weary.

So, I'm going home.

With a good tired.

A tired inspired by taking chances, risking failure and renewing my relationship with professional vulnerability.

A real good tired.

Friday, April 28, 2017

Not Yet

Every now and then I am reminded, with a shock, that the world isn't what it used to be for many people with intellectual disabilities. Over the last few days I've been reading posts from or chatting with some people with disabilities that I met a long time ago. These are all people who I met at conferences or who had attended my trainings, or who had been introduced to me by their staff at some point or another.

We've connected now on Facebook and I follow their posts and, on occasion we catch up by messaging each other. This is such a normalized behaviour for me now that I don't think about it much. There's a lot of people who I interact with in this way. I don't automatically break these connections down into categories of people ... they are people I know.

But sometimes, when things happen fast, I do notice. I notice not the disability in particular but the life the person with the disability is living. I notice the engagement that people have in their world or with others in their community. I notice that they are caught up in life, in the best way possible. I think this is noticeable to me because I grew up in a world without disabled people in it. I began work in an institution because community services didn't exist or if they did they were in their infancy. No one could have imagined what was coming down the pike, no one knew that freedom was on its way.

I notice casual comments about going off to choir.

I notice pictures of quilts made that are on display in an exhibit.

I notice the announcement of being in a new relationship.

I notice countdowns to vacations to Spain.

I notice pictures, very funny pictures, from pub nights.

I notice pictures taken at family events.

As life is what life is, not all the posts are about things being done or people being met, there are also posts that speak of the human condition and of what it is to be living a real life, no longer under the forced protection of us, the others.

I notice painful breakups, love betrayed.

I notice jobs lost or jobs not got.

I notice loneliness.

I notice sad comments about being bullied.

I notice grief at family who aren't family.

I read through these, comment or like when necessary, chat when appropriate, but mostly I am bear witness to the fact that people with intellectual disabilities, who given freedom, live it. Freedom has it's joys and freedom has it painful moments, but freedom's opposite is captivity. And while captivity would have all the pain of freedom but none of it's joys.

There are people with disabilities who still live captive. Who still hear keys jingle in every pocket but their own. I am reminded, when I notice the lives lived by those with intellectual disabilities that I am connected with, that not everyone yet has the opportunity for freedom.

Our work isn't done.

Because there's someone, somewhere, captive who, given freedom would make a chocolate cake for the bake table at their community bazaar. Someone, somewhere in captivity isn't meeting a new boyfriend today at the chippy shop. Someone, somewhere, waits, to experience the highs and lows of freedom.

Our work isn't done.

The lives that people with intellectual disabilities claim, when free, shouldn't fill us with a kind of desultory sense of satisfaction and a sense that we're done now.

We're not.No

Wednesday, April 26, 2017

Unremarkable Remarkable Freedom

It's a weird thing to be thankful for, but I was, deeply.

We are in a small city in the middle of Wisconsin where we arrived after a several hour drive from Minneapolis. When we checked in, I had to set up to do a webinar for Vita and for The National Alliance of Direct Support Professionals. I'm always nervous before one of these and was glad of the time I had to prepare for the hour long 'conversationar' which is really what it is. Once a month we go on air and chat with the author of the most recent article of The' International Journal for Direct Support Professionals. The conversation, as always we engrossing and the hour up quickly. They make me nervous, these things, but I love what I learn while doing them.

Afterwards I told Joe that I'd like to get out and go to the grocery store to pick up supper. Our hotel room has a fridge and a microwave so we can cook our own supper. We headed to a store not far from the hotel and went in. Now this is a small city, everyone seemed to know everyone, and then in we come. Me, with my weight and my chair, arriving anywhere new is like throwing a massive boulder into a pond. People look, they stare, they make comments. I know I'm facing that going in so I can prepare.

One of the reasons I wanted to go to the store was because I'd felt cooped up, I'd spent the day in the car or our new hotel room working. I wanted a bit of a 'run' in my chair. So I started whipping up and down the aisles getting in as much speed and distance as I could. The exercise made my shoulder feel good, my back stretched out, it was all great.

But what was awesome was ... though there were people in the store, none took much notice of me. It was like they saw big men on wheels zipping around their local grocery store on a regular basis. Several figured out what I was doing, this never happens, and made sure that I had a clear pathway to get up speed and race down the aisle. It was strange just to be in a place and just doing what I needed and wanted to do, and have it not be remarkable.

Not one stare.

Not one silly, or rude, comment.

Nothing, not even, thank heavens, encouragement.

No one was inspired!!

I don't get to go out and just be out. I don't get to take off the coat of armour that I wear to keep me safe.

But after about 20 minutes, I did, I took it off, I felt safe. It's been years since I've dared to do this and I couldn't believe how much the protection I carry weighed. I felt free for a moment. I noticed a long pathway, with no one in it, right near the end of my run. I decided to hit it and hit it hard to see if I could really make the chair fly.

It did.

I did.

Because I was free.

It's hard to be disabled and feel free.

It shouldn't be.

But it is.

We've closed institutions but not opened minds.

Except for today.

And it was good.


Tuesday, April 25, 2017

The Treadmill

When my power wheelchair last broke down, which it has again, I was visited by an assessor kind of person who has to sign off on my need for a new wheelchair. Foolishly, when my chair was repaired, I rescinded the request and now will have to go through it again and, of course, pay for it again. But when she was there, and when she learned that I was a wall walker, she asked if I had thought about using a walker, she thought that I'd be safer that way. I told her that I didn't think I needed one at this point and we moved on to the rest of her evaluation.

So, we spent the weekend between gigs here in Minneapolis in a hotel that has a small gym. I noticed someone using the treadmill and holding on to it as if it were a giant walker. I got an idea. I told Joe that I would like to try using the treadmill as long as he was there with me, as long as I could step up on it, as long as it didn't go fast and as long as I could grab on to something sturdy that would keep me from falling over. Joe looked a bit fearful at the idea, having been there for a couple of nasty falls in the past, but agreed.

We set out.

The room was empty and I rolled my chair right up beside the walker. I got out and stepped up on it and then we had to figure out the controls. I got off the treadmill and back in the chair as we tried to suss out what all the buttons were for, I didn't want to go flying off and I admit that I didn't want to embarrass myself. Finally we understood how to work it and I got on again.

With great fear we started it up and it went really slowly, just perfect for me. It was sturdily built and I was able to lean down on it hard, holding myself in position as my feet moved below me. It wasn't comfortable and my arms tired more quickly than my legs did, and I have strong arms. But I managed seven whole minutes. Over the weekend I got that up to ten minutes at a slightly quicker pace.

Getting back in my wheelchair felt like the most welcoming thing. I felt stable and in control and the fear of falling was, of course, gone.

I know that the idea of me on a treadmill is comic to some and, oddly, a betrayal to others, but it was just me trying something new, trying something I didn't think I could do. Do I imagine myself one day running on a treadmill? No, of course not, I'm good with that not being in the cards. Do I imagine using it again? Yeah, I do. Why not? I'm a wall walker, I'm simply using an electronic walker.

See the things you get up to when away from home for a weekend. I would never have predicted this, and, my friends, that's what made it fun.

Monday, April 24, 2017

He Didn't Believe Me

I followed them into the store, they, to a one, briefly looked back and saw me. Most dismissed me right away only a couple let their eyes linger and their giggles bubble forth. There were about eight of them. Boys and girls, all in their very early teens and all out for an afternoon in the mall. I had seen the store before I saw them heading there, it's one where I wanted to pick up a gift for a friend, and when I noticed them, I nearly turned around. But, I reminded myself, this is my mall too, this is my space too, it is my right to be here. I think I might shock you if I told you how often I have to remind myself of those simple facts.

Once in the store I saw that there was a mom there with a boy, maybe 8, with an intellectual disability. He saw the other kids come into the store and made a bee line for the back of the store. His mother called to him, and called to him, and called to him to come to the cash register and pay for his purchase. I'm sure that she heard the kids chatting amongst themselves loudly about 'special needs' and though they didn't say the 'r word' they communicated their view of him as other and as different and as less.

In their chat, they mentioned having been dropped off at the mall after church. I would not normally mention this however if you are going to be loud about your church attendance then you need to realize that you have chosen to represent your faith and your god, their casual and nearly joyful cruelty was terrible to see.

Mom wanted out of the store, her son didn't want to leave the back of the store. Joe comes in at this point and I have an opportunity to do something. I could see that mom didn't want a scene, she didn't want to confront the kids, she just wanted to make the purchase and get the hell out of the store. It had become toxic at the entry of the freshly churched children.

I rolled over by them and began telling Joe, loud enough for them to hear, what was going on. That these kids were mocking a disabled boy and, of course, me too, by how they spoke about disability with such disrespect. They heard me. I thought they'd care. They didn't. I had thought that I could shame them. I couldn't. They didn't care what someone like me said, what someone like me thought.

They also didn't stop. They began, under their breath, mimicking mom's desperate plea for her son to come to the cash register. I rolled over by him and then rolled back towards where his mother stood. He followed me, head down, like he was hiding behind me. There are times I am so freaking thankful to be tall and fat and in a wheelchair. This was one of those times.

Item is bought, mom and son are gone.

I'm in line with my purchase behind these kids. The clerk serves them and then wishes them a good day. I didn't understand why the clerk hadn't done something, he's the one in charge of the space, he's the one with the obvious power. So, I asked. I asked him if he'd heard the kids making fun of the young boy with Down Syndrome. He said that he had. He said that it disgusted him and that behaviour like that makes him want to vomit.

There was a truth and a vehemence in his words that surprised me.  He went on to say that he was in the special needs class in his school for many years, he told me of his own diagnosis and a bit of his journey. He said that he got teased daily, but that it wasn't at all like his classmates got. He said that when it happens in the store he just freezes, like he's 11 again, and alone and not knowing what to do. I immediately felt sorry for having, in my mind judged him for his inaction. Everyone has a story. Everyone has a journey.

I made my purchase and wished him a good day.

He looked at me and said, "I should have done something shouldn't I?"

I said, "You served the mom and her child with respect and with care, you were the only person in this store who modelled for those kids what dignity looks like. I think that's good, don't you?"

He nodded, but he didn't believe me.

Sunday, April 23, 2017

A Letter To Someone Who Will Never Read It

To The Handsome Young Man at the Movie Theatre,

I know what you saw.

Of course I do.

I have lived in my body and 'the community' for a very long time. I have seen myself reflected in the glass of the mirror and reflected in the eyes of those, like you, repulsed by me. So, yes, I know what you saw. 

You saw my body.

You saw my chair.

You saw my age.

But, of course, I know what you didn't see. You didn't see anything that even a warm greeting would have elicited. You wouldn't have heard the warmth in my voice as I responded to a casual hello, because, of course, you didn't offer one. Instead you offered me your face.

You probably know you are handsome. At 18 or 19, you have a good solid set of shoulders, you have blond hair dusted with bits of gold, you have the bluest eyes. I know you know that too. You will have seen it in the mirror, you will have seen your likeness reflected in the eyes of people, even strangers, who admire how you cut your way through air.

But, your face, when it shows judgement, when it curls into a sneer of superiority, when it sets hatred in concrete, is ugly.

Really, really, ugly.

I wonder if you know that.

I imagine you spend time in the mirror smiling at what smiles back. I imagine you check, maybe with some panic, for flaws and are pleased with finding none, or none that really matter. You probably have never seen the face that you showed me.

All I was doing was coming out of a door that you wanted to come through. You had to wait a second, just a second, but that was too much for the likes of me. People like me can't expect, of people like you, manners, or courtesy or decency. We are too low in your estimation. 

You made it clear who you thought you were and who you thought I was.

I am what you saw. but I am more than that.

I have a heart that loves and a heart that feels and a heart that can be generous.

But you forget, in your moment of superiority, that I see you too. But you don't think about that. You don't think about that face of yours, you don't concern yourself with the angularity of your movements when angry, you don't think of that fact that while you cannot, at that moment, see inside of me, I can see inside of you.

I am more that what you saw.

I hope, I really hope, that there is more of you than what I saw.

And yes.

You should worry about that.