Sunday, February 19, 2017

My Rule Book

We headed over to the theatre with some real anticipation, we were looking forward to seeing "My Night With Reg" at a theatre just down the street from where we live. We are very familiar with the seating plan and, even though they insisted on taking us to our seats, we found our way easily. The theatre was filling quickly and people were pouring down the aisle. The accessible seats are at the very back of the house so after we were settled we just watched the crowd arrive.

Then beside me was a woman, a really large woman, with a really bid walker, appeared beside me. She got to her seat, which was at the end row, an aisle seat, just a little ahead and to the right of us. She got into her seat with some difficulty and an usher folded up and took her walker away for her. The seats are small and she looked uncomfortable, but she was in and seated, I knew what that felt like.

A moment later, the barest moment later, two women came who had seats in the same row as she was sitting in. She looked up at them with the question, "What happens now?" on her face. They pointed to where there seats were and she said, "Okay, but you'll have to climb over me." They abjectly didn't want to. After a long pause, she said, "Well, I could get up if that's what you want." 

The two women looked at each other and then gamely tried to slide by her without her getting up. She was very, very, big and there was no room. The amount of body contact between them all was considerate. I had to look away. When I looked back up, the two women were in their seats and it was almost time for the lights to go down.

I discovered, in myself, that I have all these rules for how to be fat in public and how to be disabled in public. These rules that I live by. Without question. I live by them. They exist to make me comfortable but also, to an even larger extent, to make people without disabilities feel comfortable with me being in their space.

This woman broke almost all of those rules.

AND I HAD A REALLY HARD TIME WITH IT!!!

I felt embarrassed for her.

I felt the shame that I thought she should feel.

I had empathy for those getting by.

I had, well I don't want to tell you what I had, for the woman at the end of the aisle.

I discovered, again, as I do over and over and over again, that I have deeply buried prejudices in my heart and soul. I have a judgemental vein that robs me of the ability to be compassionate or understanding or even a little bit forgiving.

When it was over, Joe and I waited until the aisle had cleared. Another rule I follow. She didn't, she got up as the usher unfolded her walker, leaned on it, stopped the flow of those exiting to join in and head out. Finally, it was our turn to go.

We turned north out of the theatre to head home and as we did I noticed the big woman walking alongside the two women who had climbed over her. They were all amicably talking about the play and what they had thought about it. Friendly strangers chatting about what was important, what they'd seen, not how they were seated.

Thank God those women had bigger hearts than I did.

Thank Heavens they had a softness in their soul that I lacked.

But me, I've still got my rule book. I can't help it, but I do. I'm not giving it up, I worked to hard to write it. I just want to realize that it's MY rule book.

And mine alone.

Saturday, February 18, 2017

The Announcement

I saw the announcement on Facebook.

A woman with Down Syndrome that I met a few years ago is getting married. I was so happy for her and immediately wrote my congratulations. She's a lovely woman, will make a lovely bride and the groom, a man I do not know, is a very lucky man. I scrolled away from that post to others and eventually took a highly scientific quiz to determine the name of my inner sprite. "Facebook keeps me informed," I tell people, when in fact its cheaper and more scientific that introspective therapy.

It was almost a day later when I realized that, for the first time, the news of a person with an intellectual disability getting engaged and looking forward to marriage, was just news. It wasn't long ago that any announcement of any kind of romantic relationship between those with intellectual disabilities would stop me in my tracks. It was big news. Not that the news of the woman that I've met getting married isn't big news, it is, of course, it's life changing news. But I mean BIG news, news that shocks rather than surprises.

I'm no longer shocked to see people with intellectual disabilities getting married.

I need to say that again.

I'm no longer shocked to hear about people with intellectual disabilities getting married.

I remember a young man named Dale who, when I was talking to him several years ago, distracted me simply because he was wearing a wedding ring. I couldn't take my eyes off it. I'd never seen one on a person with an intellectual disability. This was several years ago but not a long time ago.

That ring and these announcements and their resultant expectations are the result of a lot of different things. They are, of course, a testament to the parents who parented adults, parents who saw their child's potential to grow into relationships, parents who were willing to push by medical and societal predictions and prejudices and just parent the child that the got, not the child they were told they had. They are also a testament to those who supported these children as they grew into real adulthoods, a major victory, the teachers, and teacher's assistance, the direct support professionals, the behaviour therapists, the specialists and the generalists and everyone in between, who managed to dust off and actually use the tools that would lead to a real life in the real world.

But most of all they are a testament to the driving force of the will and unbreakable hope of those with intellectual disabilities themselves. Throwing tantrums when treated with disrespect. Staring down the harsh glare of 'good enough' and demanding instead, 'better.' The grabbing of low set bar of  expectation and pulling them up in an exercise of power that would change their lives.

Parents can prepare.

Support professionals can teach.

But people with intellectual disabilities do.

All are important, but it's the doing that damns the darkness.

Yes, it's the doing that damns the darkness.

Friday, February 17, 2017

In Anticipation of Us

On Wednesday I arrived at the venue where I was going to speak and Joe went in to check it out. Sometimes there are better, closer, entrances for us to use. When he got back he told me that we were at the right place, at the right entrance and that he thought I'd like the hall. As we made our way towards the hall Joe was describing it as a lecture hall, complete with stage. I clenched inside. These often don't have ramps and I'm usually then cramped up front at the base of the stage, it's not a comfortable place to present from.

But I was wrong, not only did it have a ramp but a beautiful one that gave me easy access to the stage itself. Had the feeling from that moment on that it would be a good day. I remembered a couple years before using a rickety, improvised ramp to get to a stage and I had the room set up guy say, in explanation for there being no actual ramp, "No one expected disabled people to ever need to get up here." I don't think he realized what he said. Suggesting that people with disabilities would never need access to a lecture hall stage because people with disabilities had nothing significant to say, or if they did, they never would because of the shroud of shame we live under. I was offended for weeks about that remark.

But here.

I had been anticipated.

(Not me personally, of course, but people like me, all people like me.)

When I first became disabled, sitting in that wheelchair for the first time, I had many thoughts about my life to come, but one of the primary ones was about my future as a lecturer and a trainer. I suspected that the disability might change what I had to say, even if slightly, but I worried that suddenly, I'd never be on a stage again, never teaching, again. I have always known that it's a privilege to do what I do and get the chance to educate or challenge or inform, but I didn't want it whisked away because of my disability.

Clearly I have continued to lecture and continued to travel to do so and that I manage in whatever venue they arrange for me, with the exception of those that I couldn't get in because, in one case there were 7 stairs to the front door and in another 12. But for the most part, we adapted what wasn't adapted and really enjoyed those where no adaptation was necessary.

After lunch I rolled back down the ramp to the stage, rolled out onto the stage, and began to prepare for the afternoon. I watched as people strolled back in from lunch. I watched them take their seat. And I realized something, all morning, from the moment they all arrived. None of them were surprised to see a wheelchair user on a stage. Now some of them knew who I was, but many of them did not.

It seems that the idea of being trained by someone with a disability was simply unremarkable to them, as an audience. How remarkable that is, isn't it? How incredibly remarkable.

Wednesday, February 15, 2017

CRUNCH!

Until arriving at this hotel last night, I've done really well with using my own power to get myself around. It's something I'm proud of because it's a goal that I set for myself. Even yesterday, when the venue had a difficult pathway to the disabled entrance (it always annoys me when we are expected to go in a different door) I managed to push myself several meters on a steeply sloped sidewalk and then turn a sharp left to face the door and push through it. It was a tough push, but I managed.

When we arrived here last night, I immediately noticed the slope up to the door. It was ramped such that it was straight up to the door but, again, it was pretty steep. I got out of the car, got over to the bottom of the ramp, got my front wheels up over the small bump created by the fact that the curb didn't evenly touch the driveway. The on one push, I knew I was defeated. It wasn't the slope, although it was steep and I'm not completely confident that I could make it. It was the salt.

The entrance way was covered in a thick layer of salt. Big chunky pieces of salt. My front tire crunched on a couple pieced and then was stuck, I simply couldn't push through it. Joe was up at the door not really paying attention, and nor should he, I've been doing this independently for quite a while. I waited as I fought an internal battle. I knew I couldn't do it. I knew I didn't want to have help. I think this isn't an uncommon thing for people, I think maybe for disabled people that battle means something slightly different than it does for others, thought I could be wrong about that.

In the end I called out to Joe for help and we, together, got me up the slope and through the salt and into the hotel. Once through the door, though, my need for help was over and I went to register while Joe went to park the car.

For maybe an hour after I had to struggle with what happened. I had to examine myself to see if I gave up to easily, if I should have tried harder. Then I had to examine what asking for help meant and, then more reasonably, what it didn't mean.

Disability brings with it, for me, all these moments where my definition of myself is challenged and my own internal ableism and disphobia are up at the front of my consciousness. In a way, I'm glad of that. In a way I'm exhausted by it. I finally settled all the discussion in my head and was able to move easily away from that to figuring out, along with Joe, what we were having for supper.

The only thing I'll tell you about that, was that I insisted, for my meal ... no salt.

Tuesday, February 14, 2017

Valentines, Actually

Today is Valentines day.

And I think of people with intellectual disabilities who live in systems that forbid them love and marriage.

Today is Hearts and Flowers day.

And I think of seniors residences that forbid husbands and wives rooms together.

Today is Chocolates and Candy Kisses day.

And I think of all the countries that kill, imprison or torture people for loving who their heart bids them love.

Today is Cards and Poems day.

And I wonder why, in a culture that proclaims love, in faiths that espouse love and in families that claim love, so many people are forbidden ...

love

and marriage

and kisses

and gentle nudges against the ear

And I wonder how many people with disabilities are driven by love into basements and garages to meet and touch and hold ... and how many seniors hold hands under tables and kiss when nurses aren't looking ... and how many people risk death or imprisonment or torture just to feel their pulse slamming  in their ears at the barest touch.

I wonder if love hidden, if moments forbidden, if dangerous meetings are the places where Valentines, today, actually happens.

Monday, February 13, 2017

Hearts and Flowers

Valentines day.

Flowers and chocolate everywhere. Plush dogs and cats holding plump felt hearts between tiny paws. I'm diabetic, there's nothing about this holiday that appeals to me. Neither Joe or I celebrate the day. Even so we aren't furry and green and need our hearts to grow three sizes for the one day a year that 'love' is fully on display. Ruby and Sadie both love Valentines so yeah, they got a stuffy and chocolates without either of us mentioning our thoughts about the day. I'd like to call that restraint but it's really respect.

Anyways, we don't Valentine.

Ever.

Never have.

Even though I love to shop, I roll by the 'seasonal aisle,' where for all other holidays I'm often seen prowling, without even slowing. I see tired people buying stuff and standing sort of embarrassed and sort of wondering why in line ups with their arms full of stuff that is somehow supposed to communicate, "I love you" better than words and I know that they know that nothing really does.

Today though, Joe and I had a particularly and peculiarly Valentines experience. Can't say I've ever had one of those before, and I will admit it felt nice.

We'd been doing some shopping to pick up stuff to make dinner in our hotel. We stay in hotels, when we can, that have kitchens because we like to have some control over what we eat and as vegetarians it's easier that 20 questioning delivery places about chicken stock and lard.

The fellow who was bagging groceries, a guy with Williams Syndrome was, not surprisingly, chatting with great animation with the woman in the line up in front of us. He spoke quickly, was very funny, and always looked to see how she was responding. She chatted right back at him, using his name, they clearly knew each other in one form or another.

Then we pulled into place he looked over to Joe, who was in front of me, and then to me. To our great surprise he said to Joe, "A happy Valentines to you and your partner!"

I saw him see the shocked look on our faces, I mean no one ever recognizes us as a couple, and I quickly said, "Thank you very much!" Joe added his thanks.

The clerk at the till, a young gay man, stopped, looked up from scanning and then scanned the two of us together buying groceries. He burst out into a grin and joined in the conversation.

It felt good. Not so much to be wished a "Happy Valentines" but to simply not be assumed to be either heterosexual or single.

I'll take that over chocolate or flowers any day of the week.

Sunday, February 12, 2017

Well, when ...

Joe waited outside with our shopping and I went in to go to the toilet. I checked the disabled stall and it was empty. Then I busied myself by getting the door open while turning my chair to back into the space beside the toilet. As I was doing this a man of about my age stopped to watch me do what I was doing. Others had come in, it was a busy washroom, but none had taken interest in what I was doing. He however was fascinated. I pretended he wasn't there because, well, what else do you do? I knew that I was seconds away from being in and closing the door.

Then he asked me a question, "How do you do it"

"He is asking me how I take a shit," I thought to myself, a bit shocked, and thought further "What a personal question."

"Pardon? I asked, incredulously.

"How do you do it?" he said and this time I heard what he said.

"How do I do it," I said looking at him in some earnest and he nodded, looking back and forth between me and the toilet, "Well the best way to explain is that when a daddy loves a mommy ..."

Suddenly he heard, in his mind, the question he'd asked. His face blistered with heat and he rushed to a stall. The guy standing at the urinal was laughing so hard that he said through his laughter, "Shit, I'm going to piss on my shoes."

Me? I was just happy that I had a new answer to that question, "How do you do it, really , how?"

Can't wait for the next person.