Sunday, January 25, 2015

The Ride Home

I hopped on the subway, heading home. The moment I entered the car two out of the three people who were sitting in the parking area for wheelchairs got up and folded up their chairs. The third, the one at the end, did not. She was sitting in the primary seat that allows access to the space, with her there, even with the other two empty, I cant get into the space. I ask her, nicely, if she could move so I could use the space. She takes her ear phones out, looks at me, puts them back in and stays seated.

I roll back and hold on to another rail, extremely aware that I was a bit unstable and that I was in the space of a lot of people. Fortunately for me, not her, the energy and focus in the car was directed towards her sitting in that seat. Suddenly, she began to cry, not loudly. She wiped at the tears on her face looking extremely embarrassed. We came to the next stop, I had to scramble to get out of the way of the door to allow others out and others in.

At this point a woman sitting in the next row got up, reached over to her, tapped her on her shoulder to get her attention and then pointing at the wheelchair symbol, prominently displayed, and then indicating that I needed that space. She got up quickly and moved. I moved into that space, it felt good to have a good grip and to be out of everyone's way.

I felt terrible when I saw the woman sitting there crying. I had no intention of upsetting anyone. I hadn't been rude, I hadn't made comment to her, I just moved to another space.

Joe said that he thought the tears had nothing to do with what happened.

And even though I don't understand what happened, I think that the tears were a result of our encounter, my request, her refusal.

Sometimes I want to simply ride the subway. Get on, get into the designated space for wheelchairs, and ride. Too often needing specific space, even space clearly designated, brings with it interactions. Some requiring and deserving thanks. Some requiring a bit of assertion and conflict. Some, like this one, that are just baffling.

All I want is to ride, like everyone else, in silence and anonymity.

That's all.

Saturday, January 24, 2015

Unmovable Resistance

There was a crush surrounding the table. Ruby and Sadie had managed to make it up to the front to both see and touch real fossils from a dinosaur hunt in Alberta that had led to the discovery of a whole new species of dinosaur. We'd just previewed an episode of a new television show Dino Hunt so everyone was excited to see in real life what they had just seen on the screen.

As is typical it was hard for me to get to the table as people simply stepped in front of the wheelchair, such is living in that weird state of being highly visible and completely invisible at the same time. But I'm used to this so I was just slowly inching my way forward, being careful not to hit either parent or child. It was as I was doing this that I noticed two girls, I'm not sure if they were friends or sisters, but whatever they were they looked to be the same age. One was blond, the other had dark hair, both were very thin and beautifully dressed.

The blond one noticed me and leaned forward to say something to the girl with dark hair, who glanced at me while the blond continued to whisper and laugh. The dark haired girl noticed me notice them looking at me and looked away quickly. She said something back to the blond girl and a tussle ensued. The blond girl grabbed the dark haired on by her shoulders and tried to force her to turn around towards me. She met unmovable resistance.

Giving up, knowing that she was not going to be successful, she grabbed her phone and held it up to take a picture of me. Not wanting to be a young teen's Internet sensation I began turning my chair around. Before I could do so, the dark hair girl stood in front of the camera, denying the shot. This little battle continued only for a few seconds more before they were both called away by a woman who had been standing further away talking to a friend.

I do not wish to comment on the behaviour of the blond kid.

I wish to comment on the behaviour of the dark haired child.

Her behaviour is so commendable that I don't have the emotional vocabulary to say what it meant to me. Further, her behaviour demonstrated the power of 'one' to stop, to interfere with, the power of a bully. She took her role seriously, she saw wrong and she acted.

This takes courage.

Real courage.

This is a child that has the potential to grow up an into someone who will make a difference. I know that because she already has.

Friday, January 23, 2015

Today I Remember, Today I Pledge

Every now and then, in the moments just before sleep, I will remember standing in the centre of a graveyard for people with intellectual disabilities. I don't remember if I was there in winter or summer but it's always, in my mind, a cold day. One tree stood, in lonely vigil, near the centre of the land. There were no gravestones. No crosses. No markers. There was nothing there to indicate that was holy ground. Those who drove by would have seen what looked to a man standing in the middle of a small field.

The gravestones? They had been torn down and removed to be crushed and then put to industrial use. There was no one, they thought, that would want to grieve, that would want to remember. I could see evidence of this massive vandalization when searching the ground closely. Bits and pieces of gravestone could be found.

I left stunned and shattered.

First that these graves existed at all. That the institution, a huge one, which wrapped two arms around the graveyard, had been full and teeming with life. That people had been pulled from their families, pulled from their communities, and housed here. That people longed for freedom and instead ended up a few feet away, resting in a graveyard with neat graves in a row, like an eternal ward.

Then that someone, somewhere, sitting in an office writing a memo, after a meeting of other someones sitting in other offices, calling for the destruction of the markers, calling for the 'good sense' use of the material in other, more valued places.

It seemed that they counted on no want remembering, or, probably more accurately, no on wanting to remember.

Well I did.

Well I do.

Today is the International Day of Mourning and Memory.

Today I remember those who lived longing for freedom and getting, instead, captivity.

Today I remember those who while living in freedom were bullied to death.

Today I remember those who came to the community to find violence not welcome.

Today I remember those people who fought, and fought hard for the closure of buildings and and end to institutionalization.

Today I remember those people who fight against violence against people with disabilities.

Today I remember that there is work yet to be done.

Today I pledge to be part of the community of those who fight against violence and who resist the segregation and exclusion of people with disabilities.

I know today, that in that field, there is a memorial to those who were buried there. A memorial that was the result of others who came together to fight, and fight hard, for the right for people with disabilities to be remembered and to be mourned.

Thursday, January 22, 2015

Being Needed Con't

Yesterday's discussion was wonderful!


I don't have much new to add to what's already been said, and said well, in the comments. I just wanted to acknowledge the obvious, that the 'need to be needed' or 'the need to feel helpful' are needs that exist outside the paid care provider role. I think we all need those things, I think it's part of who we are as people. I know for myself that the things that I do for others, the things that make me feel needed, are amongst the most important reasons I have a good sense of self esteem and self worth - it just plain makes me feel good about myself to be helpful, to be needed, to have skills that are valued by others.

So when the care provider said, in the scene I presented yesterday, "I just need to feel helpful," they were simply being honest with the motivation behind their action. I think we all agree that the 'needs' that need to be met here are the individual with a disability who is being supported. But I think, too, that it would have been possible for the worker to have their needs, specifically the need to feel helpful, fulfilled too. This isn't an either / or situation.

Let me explain. For a brief time when I was back in University I did some work with kids in a special school. I giggle at those words now because, whatever else it was, it decidedly wasn't special, but I didn't know that then. I found that those moments when I was able to hold back my hands, hold tight to my tongue and simply be there as a supportive presence while kids did things on their own - to be there to see their faces turn to me, glad of a witness to their success, and smile was such an amazing thing. The teacher there, who had a face that never looked kind and a heart that always was, said to me, sometime the most helpful thing you can do, is wait.

We tend to see help as an action, as something done. Anyone who works with people who are learning new skills or developing independence needs to know that help occurs when inaction replaces action. Where waiting for a bright shiny new skill to show itself and be demonstrated. Those outside this field of endeavour simply wouldn't understand the joy behind this sentence:

I went to the store with JJ today and I stood there and did nothing while he paid for it himself.

Both needs could have been met.

Only one was.

That's the tragedy.


I want to address a comment made by Feminist Atavar, which was picked up by others later. The question was asked, "Why did I say anything at all?" The suggestion was that my statement could have, even though I didn't intend it, put pressure on both of the others in the store line up. That comment made me pause and think, 'Why did I speak up?'

I don't know the experience of other power wheelchair users, but my experience is that with my gender, my weight, and the way the power chair increases the sheer 'bulk' of me that people often feel pressure for some odd reason. As an example, on going, underground, between two halves of a mall, there are two ramps on either side of a step down walkway. When I appear at the top of one and look to see if it's free, it's narrow so only one person can use it at a time, if someone sees me up top, they nearly start running! Even people using walkers!! That's when I say, 'Don't rush, I'm comfortably seated,' or 'Take your time, I'm comfortably seated,' and typically people then slow down.

So when I'm in a line up and someone sees me behind them, I say it as kind of a joke, but also as a signal that it's OK, I'm really not in a hurry. I had hoped that was what happened here in this situation. However, I can see where maybe it wasn't helpful.

That's what I like about these kinds of discussions - I'm asked to think differently or more deeply - which is always a good thing.


Thanks to all who participated in the comment section!

Wednesday, January 21, 2015

Essay Question: What do you think?

This is essay day on Rolling Around in My Head. I'm going to give you a brief scene, which I witnessed a couple days ago, and I'd like you to respond in the comment section. I'm doing this because I'd like to hear other's reactions before I weigh in with my own. So, here goes:

He was being very methodical, and, in truth, taking a bit of time. I was in line behind him, with no one behind me. I was not in a rush, and said so using my favourite line in these circumstances, 'Take your time I'm comfortably seated.' The support worker with him watched with growing impatience and then reached over, took his wallet from his hands, retrieved a bill from the wallet and handed it to the clerk. The clerk looked, as I did, a bit shocked.

The young man said to his staff, "I can do it on my own."

The staff said, with a laugh which seemed intended to lighten a suddenly tense situation, "I know but I just need to feel helpful."

OK, Discuss!

Tuesday, January 20, 2015

Preparing for the International Day of Mourning and Memory

I arrived early, and that's why I began my day mourning a man I'd never met.

Years and years ago I was doing a lecture tour in the United States. One of the stops was a large institution, the size of a small town, where I was going to be lecturing in the chapel. I like to arrive early and did so that day. There were no cars in the parking lot save one parked in the space reserved for the pastor. I pulled along side and parked.

With my stuff clumsily gathered in my arms, I entered the chapel. My footfalls echoed as I moved from the outer door to the door to the sanctuary itself. When I did I noticed a coffin, set on a pedestal, just in front of the altar. I immediately felt like I was intruding, even though the room was empty, save for the coffin. I sat at the back and waited, but not for long. A short, chubby woman entered from a door just off the front, wearing robes and a sorrowful face. She looked up, noticed me, smiled in acknowledgement. She made her way to me.

She welcomed me and asked me what my relationship was to the man who had died. I told her that I was early for the lecture I was to give in that space in just over an hour. She said, "I was really hoping that someone would come." She invited me to come to the front and be there as she conducted the short service. I followed her up. She showed me a picture, laying on the top of the coffin, of the fellow who had died.

It was one of those pictures that, once seen, are not forgotten. It was an old picture, he was crouched on a bench in a large open ward. Wearing only pyjama bottoms, he was impossibly thin. One arm was wrapped around his waist, the other was held forward, a cigarette dangling from his fingers. He did not look at the camera. It wasn't the picture of a person, it was a picture of despair and neglect and loneliness.

The service began. It was, as she said it would be, short. It ended with her placing both her hands on the coffin and bowing her head in deep prayer.

I found myself crying.

January 23rd we mark the "International Day of Mourning and Memory" where we remember those who spent their lives in institutions and those who fought for the right to live in the community, to live with freedom.

It is a day where you are invited to spend some time thinking of the journey, the struggle, the fight for civil liberties and freedoms for people with disabilities and recommit yourself to the vision of a world beyond inclusion, a world of welcome. It is a day where you are invited to spend time talking with others about our history; of congregation and segregation; of bullying and violence. It is a day where you are invited to remember those, you personally remember, who never lived long enough to be free.

Monday, January 19, 2015

Martin Luther King's Diverse Legacy

Today is Martin Luther King Day in the United States. In celebration of his legacy I would like to share a video created, last year by people with disabilities, in honour of the many lives and many movements that have bee influenced by Dr. King:

The video has no dialogue, instead 'We Shall Overcome' is sung throughout:

We shall overcome, we shall overcome,
We shall overcome someday;
Oh, deep in my heart, I do believe,
We shall overcome someday.

The Lord will see us through, The Lord will see us through,
The Lord will see us through someday;
Oh, deep in my heart, I do believe,
We shall overcome someday.

We're on to victory, We're on to victory,
We're on to victory someday;
Oh, deep in my heart, I do believe,
We're on to victory someday.

We'll walk hand in hand, we'll walk hand in hand,
We'll walk hand in hand someday;
Oh, deep in my heart, I do believe,
We'll walk hand in hand someday.

We are not afraid, we are not afraid,
We are not afraid today;
Oh, deep in my heart, I do believe,
We are not afraid today.

The truth shall make us free, the truth shall make us free,
The truth shall make us free someday;
Oh, deep in my heart, I do believe,
The truth shall make us free someday.

We shall live in peace, we shall live in peace,
We shall live in peace someday;
Oh, deep in my heart, I do believe,
We shall live in peace someday.