Sunday, December 15, 2019

locked out

I like where I live.

I am lucky, really, really lucky. I have a fully accessible home, a rarity where I live. This means that I have everything I need to be comfortable and safe. And not just inside ... we also have neighbours that watch out for us and help out with things that we need help with, in the back yard and out front when it snows hard.

I am happy here.

Right now our Christmas tree is blazing, traditional carols and hymns are playing, and I've a heater beside me keeping me toasty warm. It's nice. It's lovely.

I am trapped here.

My wheelchair just can't handle the snow, not like we are getting this year. We got up this morning with plans, and this evening we were going to over to the community center for a senior's holiday dinner, but this morning, early, the snow began to fall. By the time we were ready to go out Joe would have to grab a shovel and start shoveling. I'm not having that happen.

So I'm writing this.

To all those who are in when they want to be out, to all those who depend on weather, others, or spoons, to those who know that captivity is captivity no matter who the kidnapper.

But I am lucky.

I like where I live. And I live there a LOT.

Saturday, December 14, 2019

Permission

I was sitting at an event right beside a woman with an intellectual disability. I'd seen her around and we'd chatted a couple of times but it would be a stretch to say that I knew her. Wheelchair users seats are pre-determined, we sit in spaces that have been predetermined. That day it meant that she was sitting beside me.

We chatted like we normally do and then the event started.

Over the next half hour, she asked me for permission to:

get more popcorn

go to the bathroom

say hi to someone she just saw come in

scoot around the back of my wheelchair to get something she dropped

Now, only one of those needed my permission but all the rest certainly didn't. I used up my store of:

it's up to you

do whatever you want

you don't need my permission to do that

It was shocking the degree to which she handed her power over to me. Without thought of the dangers of that move. Without thought regarding loss of autonomy. Without thought about who I might become if I consumed her power.

It would have been easy just to give her permission, it would also have been quieter because my approached caused her a bit of panic. It would have been easy to fall into that role.

But, she's about 5 years older than me.

She is my elder.

It's time that she take the reins of her life.

And gallop.


Friday, December 13, 2019

Flipping It Off

I made it to the door. It was cold. Really cold. My fingers were stinging from having to grab cold metal to push myself along a sidewalk that was heavily salted. It had been a hard push. But I was at the door, warmth waited inside. I pushed the automatic door opener and ... it didn't work. Joe was meeting me there so I was on my own, shit. I pushed two or three more times thinking that maybe one more try will magically open the door.

Finally, someone came out and saw me and offered immediately to hold the door for me. I eagerly accepted their help and headed in throwing thank you's over my shoulder. When I was in I spoke to the manager to report that the auto door opener wasn't working and the difficulty it would cause disabled customers.

He told me, and this will stretch your WTF muscles to breaking point, that the door worked it just wasn't turned on. He showed me the flip switch that would activate the door. He told me that he'd leave it on until I had left. And then you will turn it off, I asked and he said that's exactly what he intended to do.

Why? I asked

He explained that it annoyed him and a few of the other staff that it was used primarily by non-disabled people out of sheer laziness. It was put there for disabled people.

I said that this policy had meant that I sat out in the cold unable to enter. He again said that he was sorry.and then said that he didn't have very many disabled people as customers so he didn't worry about it much.

Ok, forgive me but this is just plain stupid.

Why did he care if non-disabled people used the button, maybe they had boxes and bags, maybe they had baby strollers or were holding on to the hand of a child, maybe they just liked using it.

Seriously, who cares.

Well, he does.

I swear that when it comes to accessibility people are just plain weird about it, and who needs it, and who uses it.

When we left, he came right out to switch the auto door off.

I simply don't get it.

Thursday, December 12, 2019

Freedom Too

I don't think anyone heard us.

We were speaking quite low.

But what was happening was that three of us were talking about materials to teach someone about anal sex, after lunch, and over a sharing plate of sticky toffee pudding.

We all laughed when we realized what we were doing.

We all stopped when we realized why.

People with disabilities, even those who have grown up in the community, are still far removed from the opportunity to slowly grow into their adulthood. People's opinions aren't just opinions they can actually be immovable barriers. Agencies policies aren't just policies they are commandments that can bow even the strongest back. Peer rejection isn't just rejection it can be an act of bigotry that locks an invisible gate behind which the shadow of the institution remains.

Freedom.

Freedom from.

Freedom to.

There is much to celebrate, we were after all talking about training that would happen, training that was sought out, and more, training that is being allowed.

Because that's where we are still at ... people with disabilities not having rights but allowances. I will decide, your team will decide, the agency will decide, your parents will decide if you have the right to ask for and receive information about your body. Your body is not yet yours. Your body is a political thing. Your body is a territorial thing. Your body is not under your control.

But even still.

It's important to celebrate those three people leaned in over sticky toffee pudding and talking about anal sex and how to teach it.

Because that means someone, somewhere, said, "Yes, go do this."

And while that voice and those words still must come from others. It's a welcome voice. But even welcome voices need to become unnecessary voices when it comes to the body of another.

Freedom.

Freedom to be an adult.

Freedom from the power of others.

Monday, December 09, 2019

Speak For Yourself

On Sunday we decided that we needed to inject a tiny a bit of class and culture in a weekend Netflix 'Dynasty' haze. To meet that end we went to see Shakespeare's "A Winter's Tale" which was being broadcast live from England. It was playing in a movie theatre neat us, Shakespeare and popcorn! We arrived to find the disabled parking quite flooded from melting snow so we stopped at the ramp leading to the theatre and Joe got the wheelchair out and I got in. He turned to help me get through the doors when someone appeared saying, "I'll hold the door for you." Joe said, "No, we're good, we have this routine down. "It's okay, I don't mind." Joe again, "Please just let us do this on our own." No, I'm waiting for my brother in law who is in a wheelchair too."

And then she said it, "So I know what it's like."

I hear this freaking phrase far too often. People speaking of 'knowing' what disability is like because they, pick one:

1) had to use a wheelchair when they broke their leg.
2) had a relative of some sort who had a disability.
3) went to a training where they had to undergo a simulation of disability for 15/20/45/60 minutes.
4) once worked at a camp with disabled children.
5) presently work with adults with disabilities in some capacity.
6) saw this documentary or psa about disability, and oh how it made me cry
7) have a child with a disability - of any age.
8) once saw a person with a disability across the street.

This is theft.

This is silencing.

This is erasure.

I don't care if you worked with, lived with, parented a person with a disability you don't "know what its like." You know your experience, but that's YOURS not mine. A parent doesn't "know what it's like for their child;' a staff doesn't 'know what it's like for the person they serve; and using a wheelchair for a week or two doesn't give you the slightest clue as to "know what it's like."

Speak for yourself. Your experience is valid and valuable in the discussion of disability but your experience is just yours. Disabled people who live 24/7 with their disability are the only one's who "know what it's like." But even there. I know what it's like for me, I know what my disability means and doesn't mean. But I speak only for me and my experience. I do not speak for and cannot speak to the experience of someone who has a different disability and different life realities.

So.

In any and all situations you need to 'speak for yourself.'

And, no one else.

Sunday, November 10, 2019

A Challenge

Kindness.

This month's issue of 'The International Journal for Direct Support Professionals' is one that I wrote on what it means to be, or do, kindness. It was published this month because on Nov. 13 we celebrate World Kindness Day. In the article, I challenge people to spend an entire day being kind in all situations, with everyone.

I am taking the challenge myself, knowing that I'm going to fail, sometimes, get it wrong other times, but I'm going to try. Kindness is an action not an attribute so that means that this will be a day that will exhaust me.

So I challenge you to take the challenge and then come back here and tell me all about it!

Saturday, November 09, 2019

Moving Forward

It was the morning after the first snowfall of the year. Much more fell that we expected and, as we were up early getting ready for me to go to work, the plows had not yet been through. We took a second to turn on the television to get the Toronto, where my office is, weather report. We found the station and then listened as a poor reporter stood out in the freezing cold talking about the snow and ice.

The reporter was down somewhere near Union station and you could see pedestrians quickly scooting by. Then a man entered the screen to her right and walked off screen to her left. He never looked at her, or the camera, he was solely focused on moving forward.

He had Down Syndrome.

He was alone.

He was going somewhere.

I've always thought that disabled people by the very nature of disability, ableism and disphobia live our lives as an act of open revolt. The very fact that we are shopping, and going to movies, and going to work, and going about our business instead of plummeting from bridges and over-passes gives the lie to the idea that disability is a life unworth living.

So there he was.

Walking across the screen like an advertisement for 'Not Dead Yet' he simply was.

When I write things like this, people often comment that his triumph is really our own, as parents and teachers and support workers. We so want the taste of victory to be our own. But no one can understand what it is to be him there, except, of course, him there. No one can know the stares he faces, the names he's called, the spaces closed to him.

We do what we do.

But it's his walk.

And he made it, in the very early morning of the first day of ice and snow.

He will arrive at his destination with freedom in his wake.