Tuesday, June 28, 2016

Corner to Corner: Intersections

Image description: An intersection with words at each corner: 'hello?' 'anyone listening?' 'is it just me?' and 'am I alone here?'

She stopped me at the pasta sauces. I had stopped to let someone pass and she caught up with me, "Excuse me," she said. I had noticed her in the store, she too was shopping in a power wheelchair, she too was putting her purchases in a shopping bag like I was, she too was big, not me big, but big. "I don't want to intrude on your day," she said. I said I didn't mind and we moved to a space where we would be out of the way.

"I want to know how often you are accused of shoplifting, when you are still in the store, because you are putting stuff in your bag."

I told her that I've never had that happen. I've had people tell me that I shouldn't be buying what I'm buy either because it's sweet or because they think it's frivolous and a waste of benefit dollars. But I've never been accused of shoplifting while still in the store.

She told me that it happened to her all the time. "People in scooters have their baskets, but I can't use a basket, I need to use a bag. I get stopped at least once or twice a week with people assuming I'm stealing."

"That's horrible," I said.

"Being black and disabled, I get the worst of every bad stereotype."

We chatted how my weight had people commenting on my shopping and, she at a different intersection, gets something entirely different even though we were performing the exact same behaviour.

She said she'd been waiting to see someone who shopped like she did, someone a bit bigger, she said kindly, someone who used a bag, and when she saw me she had to ask.

After our brief chat I told her that, oddly, I felt better. She said that she did too. While we both had different experiences we could still talk about those in a context of understanding. It was if she crossed the road from her corner of the intersection to mine.

I wonder why we don't talk more about disability as an experience in multiple diversities, more often. We all talk a lot about 'community' and 'access' and 'welcome' ... so maybe we need to be a community wherein all have access and feel welcome.

Intersections? A great place to stop for a chat.

Monday, June 27, 2016

Stranger: Four of Five

Image description: A drawing of a shirt becoming yellow from a dark brown.
I had just done a workshop for self advocates that was difficult, emotionally draining, and, paradoxically wonderfully rewarding. I was tired. I sat in the lobby of the hotel while Joe went up to get the car keys to take me out for a drive. We were in Halifax and I just wanted to go to one of those spots where your breath is taken away by the sheer beauty of the place.

The reason I waited in the lobby was because I knew that if I went to the room, I would collapse on the bed and that would be it. I didn't want that. I wanted beauty, I wanted quiet, I wanted to sit in the quiet embrace of my relationship with Joe. I had worn my yellow shirt for the first time that day. Many of you know the 'yellow shirt' story and I won't tell it here. But it was the first time I'd sat in public wearing a shirt that was anything but dark. I had all the shades of dark, but dark was the overall theme.

Engrossed in my book, which I'd brought because I wanted to both do something and to send a message to others that I didn't want to engage in conversation. The workshop really was draining, and I really was tired. Because I was reading, I didn't see her coming. Suddenly there was a shadow over my book. I looked up and saw an elderly woman standing blocking the light. She reached over and touched my shoulder.

She said very quietly, "You shouldn't wear yellow. We can see you when you wear yellow."

I sat there stunned. I watched her walk away. She looked so frail. But as frail as she may have been, she had the ability to deliver a blow to my heart, my mind and my soul. I hurt. Really hurt. I suddenly felt stupid. Stupid because I had chosen to wear a shirt that was bright, that brought light into a room, that pointed an arrow at an outsized person.

When Joe came down I begged him to get me out of there right then. He did. I got in the car, slumped down, and we drove away.

That was many years ago.

Much has happened since then.

I had worn that shirt, then, in confidence. I believed that I had been mistaken, in my dark browns and blues, and that I could begin to move out of the shadows. I could take my place, take my space, where ever I was, whatever I was doing. I had been wrong.

I missed the step before confidence. I needed to begin wearing the yellow shirt, the light green shirt, the electric turquoise shirt, the soft lavender, in defiance. I needed to go out knowing that I would be more visible, more easily seen. I knew that I was making myself more of a target. I knew that in breaking convention, I was spitting in the eye of the beholder - and that sounded good to me.

There has been a credible threat against the pride march here in Toronto. I have been clearly stating that people with disabilities who rely on assistive devices to get around need to consider two risks. The first is the risk that everyone else faces, that there might be someone there wishing us more than harm, they are wishing us death. Like the eugenicists, they think we are better dead than gay. Without disabilities, you can clamber over the barriers set on the street to separate the crowd from those in the parade. People with disabilities, like me, will be trapped. Joe and I have talked this through and looked at what possible strategies might be. We have a couple, just in case.

I am wearing my yellow shirt.

Because I want to be seen.

I want my presence there noted.

Because, that lady in the lobby was right. They can see me when I wear yellow. The lady in the lobby was also wrong. She assumed that since they didn't want to see me, I should grant their request. Fuck that. So let them see me. Clearly.

I'm here, I'm a queer on wheels. I'm a fat guy on parade. And that bright yellow shirt, it's a shirt, not a target.

People need to get that. Those with guns, those with judgements, those with insults and those who would abuse me.

I've thought about it a lot since that stranger approached me in the lobby. I think I've learned from it. Here's what I want her to know:

It's a shirt.

Not a target.

Sunday, June 26, 2016

Invisibility: The Cure

Image description: A Tim's card with the words 'great coffee' above and 'cures invisablity' below. On each side of the care is the word 'Magic' surrounded by pink fairy dust

She was sitting in the sun, resting her back on the base of a streetlamp. Her hat was in front of her with a few meagre coins in it. The corner she was sitting on was at one of the wealthier intersections of the city. People, with shopping bags full, swarmed by her, not seeing her, not stopping. I, however, was headed right towards her.

I've written here before that I keep 5$ gift cards for Tim Hortons in my wallet to give to people on the street. In winter they can get something hot, in summer something cold. And if you're not Canadian, you need to know that here in Toronto at least, you are never far from a Tim's. I have been criticized for giving the cards, not cash, but, it's what I do and it's what I'm comfortable with.

Just as I got to her a group of men and women stepped right in front of me. Right into my path, as if I wasn't there. They stood there at the light, waiting. I was in a bit of a hurry and so I said to the couple who stood between me and the woman, the couple that was part of the group who somehow couldn't see me, "Excuse me ..." They looked back, saw me and stepped over a bit, as if I was jockeying for a place at the curb.

Instead, I leaned down and said to the woman, "Hello!" She looked up and responded, "Hi!" All the while we chatted about the weather, and the crowd waited for the light to change. I pulled my wallet out. I handed over the card to her and explained that it had 5$ on it. She said she was needing something cold and carefully, very carefully, put it in the pocket of her pants.

I didn't notice, because I was focused on talking to her, that we had made those at the curb very, very, uncomfortable. I know this only because as the light changed she said to me, "Did you see what happened when you spoke to me?" I said that I didn't, I had been looking at her. "Suddenly people could see us. We were both invisible and then we became really visible. They were so uncomfortable with us both being human and being kind to each other." I wondered, I said to her, if maybe it's okay to make people a bit uncomfortable some times.

"Thank you," she said as I left.

"Enjoy the card," I said.

She said, "I will, but that's not what I'm thanking you for. Thanks seeing me. Thanks for making me visible. I felt like I mattered for a few minutes."

"You do," I said.

Joe told me that he had seen the same thing. He had stood and watched people react with real discomfort as my act of giving was held in stark relief to their act of not caring. I told him what she had thanked me for and then said, "But the thing is, I was invisible until I spoke to her, it's like we both, for a moment, became real, flesh and blood, people. I wish I'd thanked her, because, for a few moments, she made me visible too."

Saturday, June 25, 2016

The Time of Her Life

Image description: A clock face with the 12, 3, 6 and 9, diving the face. Between 12 and three the word 'congregate' is writting in red and underlined with the words 'for your own good' written in lavender. between 3 and 6 the word 'segregate' is written in red and underlined and in purple below are the words 'for the good of others' between 6 and 9 the word 'restrict' is written in red and underlined and the words 'for the good of the system' are written, and between 9 and 12 the word 'freedom' is written in red and underlined with the words 'for your good from your voice' are written.
This is beginning to happen more and more often. And because of that I can testify that dreams, even impossible dreams, do come true. I am not writing this as an 'inspirational story' I want to be careful to assert this right up front. This story isn't about anything other than how wrong we, who are professionals, and we, who are parents, and we, who are paid to assess, can get things very wrong. This story isn't about anything else but how the voice, clearly spoken, of someone with a disability can be buried under the opinions of others, smothered by stacks of paperwork and silenced by expertise. That's what it's about. It's about running into people, years later, and seeing the life they had now, and what we predicted then.

I don't want to even remember how long ago I met her. Let's just say I've been doing this now for over 40 years and it was near the start of my career in the community. I wasn't long in institutional care, so very near the beginning. She was known to be "non compliant" at the time, which just meant, and I did see that then, that she was what my Grandmother would have called, "contrary." She didn't willingly submit to the authority of others. She wasn't "out of control" even though everyone thought she was. She never lashed out physically, never broke anything purposely, never spat, or kick, or slapped anyone. She did break rules, but only the ones she thought were unfair.

When planning for her future she stated that she wanted to live independently. Everyone thought this was a very bad idea. They came up with all sorts of reasons why it was an 'inappropriate dream,' as if there is such a thing, but, though no one said it, her gender made the difference. I'd like to say, remember this was nearly 40 years ago, but I'm not sure that the same kinds of decisions aren't being made today. They came up with the 'excuse' of vulnerability. It was an easy sell. They talked about her vulnerability from only one perspective: the world is more dangerous for women than for men. They didn't talk from the perspective of disability: people with disabilities may well be safer walking down the street in their neighbourhood than they are in the group home in which they live. Now we are working to change that now, but we weren't doing jack shit about it then.

From the very first, I have worried about the conception of people with disabilities being vulnerable because they have a disability. That makes us lazy. "Well, can't change that, so we're done and dusted." I've always thought that because we didn't teach safety skills and abuse prevention skills and self advocacy skills, we were kind of responsible for at least some of the issues regarding vulnerability. I had not, at this time, developed 'The Ring of Safety' which are the skills people with disabilities need to learn in order to live more safely both in services and in the community, so all I could do was suggest that given her skill set, she needed to learn skills that would allow her to fulfil her dream and move into the community. Here's what I hate writing, because of immense pressure, not from the agency I worked for, but from the team supporting her. I did add a line in the report about her vulnerability.

This is something I regret.

I have not always been strong enough to do my job both ethically and well.

Well, she did well on her behaviour plan, primarily because the plan looked at how staff needed to respond when 'behaviours' occurred and when resistance was met with reasonable discussion, a new kind of relationship was begun with the staff in the home. I don't know what happened in the intervening years, because I was done, and I was gone.

Then, the other day, I noticed a woman in a scooter, headed towards me smiling. I thought I recognized her, so I waved. She pulled up beside me and said 'Hi.' It was the voice. I remembered her voice. We pulled off to the side to talk. She told me that she'd been using the scooter for about a year and laughed and laughed as she talked about the things she destroyed learning to drive it. I asked her where she was living and she told me about her apartment a bit nearer the top of the city. She paused and looked at me, "I'm in my own place. I've had it a long time."

I was thrilled. I knew this was her big dream, her professionally determined, psychologically assessed, 'impossible dream' came true. I asked her what it was like to have her own place. She looked at me strangely. She said, "People ask me that all the time and I don't know what to say. How do you like having your own place?"

You know I don't think at all about 'liking having my own place,' I like my place but that's a different thing. I never assumed I wouldn't have my own place so having it was kind of immaterial. What I had taken for granted, she had had to fight for, tooth and nail.

We spoke a few more minutes and then she said, "Do you still work at the same place?" I told her I didn't. Then, I said, "I want you to know I'm different now, I listen better and I have more courage about what I need to say and when I need to say it."

"Good," she said, "good."

Friday, June 24, 2016

Stranger: Three of Five

The presentation was over. It had gone well. I'd enjoyed the audience and the audience had seemed to enjoy my presentation style. I was packing up, getting things ready to go back into my wheelchair bag or into my briefcase, a few people had asked questions afterwards but the room was nearly empty now.

Then, she came in. She was a young woman, I had noticed her right from the start. She had a unique and quite beautiful tattoo wrapped around her upper arm. I also noticed that she was one of the people who had reacted emotionally to a lot of the stories I told and was also one of the few who had the daring to ask a question. I say daring because, the larger the group, the fewer the questions. There are risks in asking any question, but those risks increase where there are more there to hear the question and then judge you for asking. It's odd that those who come to an event to learn can be very judgemental about those who participate in their own learning process.

All that to say, I recognized her. Joe tells me that I sometimes explain too much, I tell him, "yeah but it's interesting right"? Joe gives me a look that I've yet to really be able to interpret.

She approached me at the table and I could tell, which surprised me, that she was quite nervous. She'd seemed so confident during the lecture itself. When she got to the table she put her hand out for me to shake, which I did and she introduced herself. She didn't introduce herself by name, or by occupation, as most do, she introduced herself by gender. "Hello, I am a woman," she said. I was nonplussed because, though I am a gay man I recognize women with a fair degree of accuracy. I said, "Clearly, you're going to say something to me that makes that introduction necessary." She nodded, gravely, without a smile.

I had told the story of Ruby in Florida when she was 3 as the closing story in the lecture. She said she liked the story and asked, "Am I correct in assuming that you love that little girl?" I said that I did and that I had mentioned that fact in the story.

"Well, then, she said, this total stranger, "I noticed that you used the word "B*tch" in your lecture a couple of times. I nodded, that I had.

"I have a question, how are you going to feel the first time Ruby is called that as a name simply because she's a woman?"

I didn't have to think.

"I'll be angry."

"Then why, during lectures to make it an OK word for people to say? Why do you make it easier for a little girl that you love to be hurt by such an ugly word. You recognize it's an ugly word right?"

I was standing there stunned. To be honest, I'd not thought about the word anywhere near as deeply as I was being challenged to think about it. My first response, as it always is, was defensiveness. But I got over that fairly quickly, I think, primarily, because I really love Ruby and Sadie, who came along a little later.  I said "I'll think about what you've said."

She nodded, a bit of disappointment on her face, she didn't understand that when I say, 'I'll think about it' I really will.

As she reached the door I called to her. "OK, I've thought about it." She smiled, surprised. "I won't use that word ever again in a lecture and I will take it out of my speech and out of my writing. You're right, I love those girls, I love my women friends, I respect the women I work with, I need my language to show which side I'm on."

I've kept to my word. I've slipped a couple of times, and I've apologized when I've done so. Further, it's out of my spoken language now, pretty much for good and I haven't written the word since.

A stranger, with courage in her heart, came and challenged me.

And  I was made different.

She may never understand how deeply that confrontation changed me, how it made me think about the simple things we can do to make the world safe for women. I learned to be intentional in interacting with the world that those two girls are growing up in.

Love, isn't just an emotion, it's a responsibility.

Thursday, June 23, 2016

A Different Coming Out

Sometimes there is a depth of sadness that comes with disability that is frighteningly deep. I felt it today coming home from meeting with and speaking to wonderful people up in Owen Sound. We were driving up Church Street and there's a place that I would desperately like to go. If you don't mind I'm not going to tell you where that is, it's kind of personal, and I'm not sure that, if you heard where it was you would understand why I felt like I did. Anyway, I glanced over and saw it.

I knew it was inaccessible. I realize it anew every time I go by. My first thought is always, "Oh, I'd like to go there." My second thought is, "Oh yeah, it's not accessible." People speak about accessibility and inaccessibility all the time, I have have done so myself many times here. But, I'm coming out. I'm going to state, categorically, that sometimes the experience of wanting to go somewhere and not being able to because it has one step, as in this case, or ten steps as in many other cases, is devastating emotionally. In short, it hurts. Really hurts.

Today I had the 'Oh, I ..' and the 'Oh, yeah ..' experience again and suddenly, felt like weeping, just letting go and crying. The sadness I felt at the simple fact that I can't go somewhere that I really want to go because ... and here's where this thinking is dangerous ... I have a disability.

I had to wrench myself away from that thinking. That's thinking that will lead, for me, to depression. I had to remind myself that the source of my sadness is the inaccessibility, the concrete barrier, the prejudice built into design, that I was faced with, not the wheelchair I sat in. The wheelchair that carried me up to Owen Sound, the wheelchair that made the lecture possible, the wheelchair that gave me the life I have.

But none of that matters.

What matters here and what I want to say, is that there is a deep sadness, a barbed sadness that hurts when you swallow it down, that comes from watching others step in to where you can never go.

I've pulled myself up from where that feeling left me, but my emotional muscles will be sore tomorrow.

Inaccessibility isn't just inconvenient, it hurts.

Really. Deeply. Hurts.

Wednesday, June 22, 2016

"I really don't mind," she said.

We were in a real hurry, Joe had picked me up from work, rushed me home, and because we were so pressed for time, we changed our routine. Normally, Joe comes in with me, helps me into the apartment and then goes and parks the car. I am so much stronger now because of the weight lifting that I thought we could try something different. I asked Joe to help me into the building, we don't have disabled access doors, and then I'd get to the apartment, and in, myself. He agreed.

Once in, I pushed the button for the elevator and was alone when one came. With Joe there I back in, I realized I couldn't do that alone because the door would close before I got in. No one else was there to let on first so I began to roll in, I got in, turned so I could push the button, and was surprised that the door wasn't closing. I thought maybe I hadn't pulled in enough. I turned to look and a woman was holding the door open. I saw her and she said, I swear I don't make this shit up, "That's OK, I'll take the next elevator."

Now, the way I was in did preclude her getting on, but, what?

I said, "Thanks."

She said, I swear, "I really don't mind waiting for the next elevator." Her hand was firmly planted such that it blocked the door from closing.

I said, "Thanks."

She said, I really do swear, "It's really OK for you to go by yourself, I can take the next one."

Her hand didn't move and the elevator was now protesting the blockage and beeping.

I said, "Thanks, could you let the door go now please?"

She said, do I have to swear again, "I'll just wait here in the lobby and take the next one, you go on up yourself."

I'm now frustrated. I want to get up, because I've got to get in, eat a really quick lunch and head out for a meeting downtown. I said, "Let. The. Door. Go."

She said, even to my incredulity, with the elevator beeping loudly, "You go ahead then, I'll wait for the next one."

I sat there. I didn't look at her. I didn't engage with her. I just let the elevator say in it's own dialect, 'get your hand of my freaking door.'

That worked.

She let go.

And presumably, though I'm guessing here, waited for the next one.