After

There is a peculiar type of silence.

It is the quiet that happens after noise departs.

It can be welcome, a relief.

The streets after a riot.

The dictionary says that peculiar means 'exclusively belonging to ..'

It says that silence means 'the absence of sound.'

So there is a peculiar kind of silence.

That happens, each year, at our house.

Suddenly the noise of joy.

The explosions of laughter.

The ripping of wrapping paper.

The jokes over dinner.

Suddenly the noise of comfort and closeness.

Of people happy.

Stop.

With the closing of the door.

And we sit.

In our chairs.

Listening to that very peculiar silence.

That tells us that we are loved.

A Voice Worn Gentle: Christmas Eve Post

For many years now, Joe and I have made our way to the Roy Thompson Hall to see The Toronto Symphony Orchestra and The Mendelssohn Choir perform "The Messiah." When we lived in Toronto we took the bus there, now we drive. After learning last year how and where to park, we did just that. We backed into a disabled stall at the same time as another older couple.

He needed his walker and I need a chair. As she was getting the walker out she noticed Joe pull my chair out of the car. "That looks like it's light," she said. Then Joe explained that it was a carbon fiber chair and that it only weighs 8 pounds. I asked Joe, while I was still sitting in the car, to tell them both the make of the chair. He didn't hear me.

When I got out and in the chair, they were just done and also ready to head up into the hall. I rolled round and told them the make of the chair to ask for, she looked at me and said, "And clearly it can hold a lot of weight." Now, I had been in a good mood, I had been looking forward to just going to the show and enjoying the music. I keep forgetting that I have to deal with shit like this all the time.

"Thank you for pointing that out!" I said, as if I was shocked at the revelation that I'm fat. She heard the tone of my voice for what it was and scrambled, "I was .. I was ... I was just trying to congratulate you," she said. I didn't respond because I was done. Yeah, right she was congratulating my chair not me, I thought, but didn't say, not wanting to prolong the conversation.

When the elevator came, there was room for all of us but they said they'd take the next one. We'd offered, they declined, it was done.

I thought.

When we got to the top and got out I had to push into a crowded room. The door had not opened yet. So we were all kept warm by each other's presence (which would have been a nice topic for a Christmas Eve blog). They arrived and were right behind us.

Suddenly, the fellow, her husband, reached his hand out and touched my arm. I turned to him and he asked if I could repeat the name of the company we bought our chair from and the name of the chair. His voice was gentle, softened by age, so I told him again, told him everything, including the name of the salesperson to ask for, the best there. I could see her off to the side taking notes. I was glad to be of help.

Just as we finished the conversation he said, "Thank you for being so gracious, it's hard to always rise high, isn't it?" I said that it was. "This time of year, it's the gifts that are hard to give, that we end up remembering. Trust me, I'm much older than you."

I could see in his eyes that it mattered that I heard him.

And I did.

So I say to you what I said to him and his wife, "Merry Christmas."

What Compliance Does

We went to see a broadcast of National Theatre Live's production of The Madness of King George III yesterday at our local cinema. I love how small and accessible the world can see sometimes. This is a play that I'd not heard of but one whose title intrigued me. Well, in fact, I kind of hated it. One of the reasons is the, much lauded by the non-disabled press, performance of the lead in the role of King George. He played madness as if it were kind of a frenzied cerebral palsy. It was an insult to both people who struggle with mental health and people with disabilities. It was over the top awful.

It was also, kinda, boring. The one dimensional king was hard to relate to, hard to feel for, hard to take as fully human. So without him it was like The Madness of Someone Not Very Interesting.

But.

I'm glad I went.

Because there was a line of dialogue that came during a scene where a doctor had come in to consult on the king and his behaviour. The doctor talked about the stressors that come with the royal role. He said something that slammed against the back of my mind and pinballed around all sides. It left me momentarily intellectually reeling. I love it when that happens.

I wasn't much engaged in the play so I had time to think on it. Now this is probably a really poor paraphrase of that dialogue:

The mind and heart cannot flourish fed a steady diet of compliance.

!!

I say again.

!!!

That is big stuff right there. It's not just a quote but a mental meal. See then he went on to say that people need other people to stand up to them, to disagree with them, to put them in their place, but those whose roles prevent that from happening end up with a mind that languishes.

Holy Shit!

Look at what we've done.

By training, programming, and otherwise beating non-compliance out of people with intellectual disabilities we have denied their freedom and damned our own growth.

We've done damage all round.

In the face of constant compliance we learn only that we are right all the time, that we are good all the time, that our actions don't hurt even some of the time.

Our minds and hearts grow lazy.

And lazy minds plus lazy hearts are the one's that lead us to cruelty, and a feeling of our own rightness to rule over the lives of others.

The mind and heart cannot flourish fed a steady diet of compliance.

I'm glad I went to the play, I'm glad that I was feeling bored of the performance, because it allowed me to both hear the dialogue in such a way that I could feel it sink into my soul a little bit.

That's what art, even art you don't like, does.

Conversation / Confrontation / Conflict

"Sir!"

"Sir"

"Sir"

I look to see who's calling out.

He's headed towards me.

I am pushing uphill towards the mall.

He's walking quickly but with great effort.

Hus legs work differently than others.

He is a member of the disability club.

We have eye contact.

"Can I give you a push?"

"No, thank you."

"I don't mind."

"I do, So NO."

"You're doing good. Keep it up."

I stop just before the door.

He catches up.

"What are you doing?"

"What?"

"You have a disability too. You know how people view and treat us. Why are you doing what they always do? Why did my 'no' not matter to you?"

"I don't see myself as disabled."

"Well, everyone else does"

"I am not disabled."

"Well then you are a jerk."

"What do you mean? I was only trying to help."

"You were only trying to help a man who was, with ease, pushing towards a door. Helping me doesn't make you less disabled you know. It's not a feather in your cap."

"Fuck off."

"Have another day of pretending you aren't what you are. You need to come out, man."

"I hate you, you prick."

Well, then, at least I was treated as if I have one. Disabled people who don't have a disabled identity need a bigger closet with wider doors and no mirrors.

Fortune's Child: a 66th Birthday Post

It doesn't happen often, it may seem so because I've written about weird things that happen at the gym, but by and large I'm treated with respect and given the gift of invisibility when I work out at the gay. I don't want to be stared at when exercising, and I'm not, with rare exception. But things do happen. Yesterday an older fellow stopped, tall, lean, and smiled at me. He obviously wanted to say something so I stopped.

He said that he was moved and inspired by seeing me there. I was, he said, obviously working hard because I was struggling a bit. He said the he only did some weight lifting, with small weights, to keep himself toned. Because I run, you see, that's what I do. OK, I thought, done now? Nope. He went on to say that he saw me and realized how fortunate he felt that he could run. "I guess you make me realize how lucky and fortunate I am.

Then.

"I don't consider you as more fortunate than me. The very idea is insulting. Why do you think that what you do is better than what I do? Why do you think that you have more joys than I do? Why do you think that fortune gifted you and left me a lump of coal. Let me tell you, being disabled has its own joys, its own magical moments, its own gifts. Go off and run. Go off and feel better than me. But realize you are simply jerking off using pity as a lube. "

Is what I said an hour later in my head.

Sometimes I'm stunned into silence.

But, this morning, waking up and laying in bed for a few moments while I woke up. I realized that this man, the one I inspired, had given me a great birthday gift. We have a day in which celebrations are planned that I'm eagerly looking forward to, but in my waking moments he created an opportunity to think about my life. To ask myself a fundamental question.

Am I happy?

He assumed that, because he didn't have a disability, he was fortune's child. He assumed that, because I do have a disability, I am not.

Is he wrong?

I'm 66 today. That's a lot of candles. I have only been disabled for about 14 of those years. My life before and my life after seems almost eerily similar. I still like the same things, I still think fart jokes are funny, I still think that value isn't a gift given by others but a gift given by birth.

But my life did change. It changed in ways that changed me. I have learned lessons that I never would have before. I have lived at the very edge of people's tolerance and dead center in the eyes of people's disdain. I have seen extraordinary kindness and outrageous bigotry. I have seen 'community' and been frighten by it. I know now what battles need to be fought, I have learned how, in my own small way, to fight them.

There are days when Joe, standing beside me, and casually puts his hand on one of the handles of my wheelchair. He doesn't notice it, it's a natural move. It's a move of intimacy. It's a move of warmth. It's a move that acknowledges his love of me, as who I am, in a powerful way.

Does that make me fortunate?

Yes.

But.

Not more fortunate than any one else.

I don't know what joys you have in your life. I don't know where your path has taken you. I don't. So I don't assume that my journey relates to yours in any way. We each have our own paths, we each travel different journeys. What is the worth of considering who's more fortunate?

Yes, I'm happy.

That tall lean man who burst into my day, without consent or permission being asked, that man who felt that his privilege gave him the right to speak to a disabled person working out in a gym, disrupting a routine, and disparage him by being 'inspired to feel more fortunate,' that guy -- thank you.

 I got up this morning to the realization that I am happy. I feel comfortable in my own body. I feel satisfied with where I am and who I'm with.

Thank you.

Thank you for making me think.

I am fortune's child.

Like everyone is.


***

I am raising money this year ... here is the link if you are interested ... https://www.facebook.com/donate/428944460976140/1093891917458984/

Gift to Myself

I left Joe to wait at the door as I headed to pick up the final thing on my list for him. The mall was busy but there were stretches where I could go all out. Push my chair as fast as I could. I was over enough that someone coming out of a store wouldn't be in my pathway, even so I kept a very watchful eye as I soared through the mall.

A couple of people, maybe even several, really noticed my speed as my arms pumped hard to accelerate and race through the space. Some disapproved. Many didn't. They just smiled.

For me, their reaction wasn't particularly important. I don't care why some disapproved and others enjoyed what I was doing.

What mattered was that I was getting to use my strength just for fun. I've been working out for almost a year and I'm pretty strong now. My chair is lighter and more agile and, well, so am I.

Sometimes I feel a need to just play with my chair, play with my strength, enjoy feeling strong and enjoy feeling fast.

We all work so hard for things in our lives, sometimes we forget to enjoy them.

I've worked hard to get strong.

I've worked to get fast.

And today I enjoyed that.

This is a gift I give to myself.

Another Gift

It is sometimes hard to Christmas shop for Joe because when I'm in a store or mall, he's usually beside me. We do a lot of this together. He gets to do his during my work hours, because he has time to wander the shops, but me, not so much.

Gotta be careful that there isn't a spoiler here - he reads the blog.

I went into a store and asked Joe not to be with me but to wait outside in the mall. He agreed and I went and got a bit of help from the staff, who were really friendly and welcoming. This surprised me because this is the kind of store where, when people with disabilities shop there, we face criticism about how we spend our money. But I took their friendliness and attitude as simply meaning they weren't assholes who felt they had a right to control my finances.

I made the selection and headed over to the cashier. When I got to him, I found that he was equally cool with everything. I tapped my bank card on the reader, it was paid for and I was good to go. I asked him if he could put the parcels in my wheelchair bag and he agreed. When he got beside me he said, "These are the kinds of things that people like to steal. The bag tells them what's in it and I'm worried that your wheelchair bag is open. Do you mind if I push these to the bottom of your bag? I believe you will be safer if I hide them a bit. Don't want you to have them grabbed out of your bag. Also as a disabled person people may figure you for an easy mark I wouldn't want for you to be mugged for those gifts."

So, he saw how my wheelchair bag is pried open by the way it hangs, he saw a potential danger, and asked my permission to do something to keep me safe. Clearly this is what he thought that I should do, but he didn't inflict that on me, the choice was mine. I thanked him and asked him to shove the parcels deep into my bag. When done he said, "There, no-one is seeing that!"

After I thanked him, I headed on my way.

There are certain dangers that peculiar to each of us with disabilities. This fellow managed to give me disability informed advice.

1) You're bag is open, people may steal from it easily, I should make sure the package can't be seen. 

2) You have a disability, people may see you as someone easy to target, I should ensure that you are safe if I can.

How awesome.

I've literally never had this kind of interaction in a store, ever. Not once.

I'm getting a lot of gifts early this year.

No 'Splaining

So this happened yesterday.

Background: My doctor is fully aware of my distrust of the medical system and in accessing health services. He has never challenged or doctorsplained away any of my concerns or fears. He knows I come with a long and vast history of interactions that were disrespectful because of, first, my weight and second, my disability. I put them in that order because I was fat long before I was disabled. In one instance early on in seeing him he actually sat at his desk, shook his head, and apologized for something that had happened that he didn't do. It's unusual to be believed. It's unusual to be taken seriously.

So, as Joe and I hadn't seen the doctor for a while we both had little lists. We went through them and for one of my concerns he's decided that I need to see a specialist. He asked me about my experience at one hospital, how had I been treated, how safe did I feel. Then he asked about the other hospital where I'd also received service.

He wanted to take my experience into account when deciding where to send me. Ultimately he will choose where he thinks they have the expertise needed, but all things being equal. My opinion weighs in.

I am astounded by this kind of support.

I am astounded that my voice matters.

I shouldn't be, but I am.

I think of this in relationship to the people I support. Do they get asked often enough? Do they have their voice heard and valued rather than heard and dismissed? Do they still live, like I do, with feeling grateful for being involved in the decisions made regarding my health and my care?

I hope so.

I really do.

Because I was astounded.

And I shouldn't be.

Any decision now made by my doctor, I will have faith in, I would have anyways, he's a good doctor, but now the level of trust in a system that has often served me poorly, has risen just a little bit.

Which is, in my case, just a teensy bit miraculous.

Accountable

He may have been about 14 or 15 years old, out with a bunch of his friends. They were a noisy bunch, banging into each other as they walked, laughing loudly, and generally being boys drunk on their own testosterone. I'm not fond of groups of teens, they so often see me as an easy target, I tensed up when they came alongside where I was sitting. Joe was at the car, having forgotten something, and I was waiting for him.

Predictably, the boys turned their gaze to me, there were some whispers followed by guffaws, there were overt stares. I saw a woman with Down Syndrome approaching from the other side. She saw them and looked scared. I turned my chair, there is much more of me to see from that angle, and then I took my coat off. My display and my actions distracted them from raising their gaze from me to her. She escaped safely.

"We take care of ourselves, we take care of each other." (From the pledge of personal power)

They were beginning to jostle and move forward. I watched them leave. One of the boys, maybe a bit younger than the rest, turned to look at me one last time. I looked straight in his eyes. I wanted him to know that I had seen him. And I don't mean having seen his behaviour. And I don't mean seeing his cowardice. No, I mean that I had seen him. A boy willing to participate in cruelty towards a stranger, a boy who went along instead of standing up, a boy who could have chosen differently but didn't. I had seen him and his easy cruelty and his weakness.

He mouthed, "I'm sorry," to me.

I shook my head.

It wasn't enough. He knew better, they all knew better. I'm done with easily given apologies. I'm done with letting people off the hook, I'm done with being judged as inhuman yet being expected to dig into my humanity to find a way to make those who hurt me feel better about themselves.

He looked distressed.

I may have ruined his Saturday.

But I hope I improved the rest of his life.

A Holiday Miracle

I rounded the back of the car and pushed myself up the cut curb. I think the crunching of salt under my tires caught his attention and he looked over at me. The school's principal waved and commented on the mild night, I did too. He didn't break his gait when he saw me, he kept on going towards the door as quickly as he had been before. We chatted about nothing, as people do, as we approached the door. It was clear he was getting to the door before me.

He hit the automatic door opener and the door swung open and he walked through. He did the same with the interior door and he walked through that too. All I saw was his back as I pushed through both open doors myself. Once in he asked where we would be sitting. I told him and he followed me to where we traditionally sit for the Christmas pageant. He moved a couple of chairs aside and then carried them away, entreating me to enjoy the show as he left.

Who is this guy?

I can't tell you how awesome it was to meet with and chat with and follow into a building someone who simply didn't react to the wheelchair. Almost everyone does something, slow down, speed up, step aside, make a huge arc around, something. He did nothing. Almost everyone would have made a big deal about the door, holding it, getting in the way holding it, flattening themselves against the wall while holding it, something.

But I followed him in, saw only his back.

Like.

Like.

Like I was an adult.

Like I was competent.

Like I was independent.

Like I had the skills to get myself around unaided.

Like I lived a life wherein I didn't need the kindness vultures, circling above me, swooping in to aid in every task.

But mostly like I was an adult.

It was a great start to a great evening. Ruby and Sadie did well and I watched them with a kind of awe. Who are these lovely kids, how did they grow so tall?

Also, I got to see a kindergarten Mary and an Angel get into a shoving match over who got the mike. Mary won and said her piece unapologetically. Go Mary.

But the best gift of the evening was the principal's back.

Ahead of me.

Going through the door.

A Holiday Miracle.

His Place

She is upset. Very upset. She sits down to talk to me during the morning coffee break. She is attending a conference wherein am presenting to staff at an agency in the morning and will be presenting to people with disabilities they serve in the afternoon. I usually prefer doing it the other way round but that wasn't possible this time. She came to speak to me because she wanted to give me a heads up about some of the people they serve.

She told me that 'they don't understand our role' and 'they don't understand that they are disabled and need our support'. Whoa! I asked her to give me an example. She said she could and I noticed that she was getting teary. She told me of an encounter with one of the men that she supports.

His doctor had told him that he needed to lose 20 pounds and had put him on a diet. She had been at the consult with the doctor and when she left she told him that she would help him achieve the goal. He said 'No,' and she thought he was just upset by what the doctor had said. (When in fact he meant what he said 'No.')

He refused to change his eating pattern and she told him that she would 'put him on a program.' He told her that he would go on a program only if she did too. He said that she was a bit heavy too, so if he has to do it she has to do it as well.

She was furious that he had spoken about her body. I asked her if she had ever talked about his body, she said that she had but it was just joking like calling his belly a 'spare tire' and telling him he looked pregnant. She didn't make the connection so I did for her. "Well you made comments about his body and he made comments about yours. In fact I think what you said to him was ruder than anything she had said that he had said."

Then it slipped out.

"He just doesn't understand his place."

His place, HIS PLACE! His place which is obviously to be subservient, silent and submissive. He clearly stated that he didn't want to diet and when pushed said, "I will if you will."

All that needs to happen for someone with a disability to become problematic is for them to become rightfully assertive.

She brushed my comments away and said, "Make sure when you teach them about their rights you teach them about ours too!" She stormed away from me.

Um, no. If I was going to teach that, I'd have to start with her. Having rights is one thing, having power is another, added together many people end up with entitlement. He had called equal in a situation where equality wasn't welcomed.

In a place where equality wasn't welcomed.

With a person for whom equality wasn't welcomed.

Just before I was to start to teach, she reminded me of what she said. My response was 'Good luck on that diet, hope you both do well."

Encore

Have you ever had a behaviour that you wanted to get rid of, an impulse you wanted to control or a goal you wanted to achieve? Have you ever tried everything for change but find that you keep making the same bad decision over and over and over and over again?

That's me.

Right now.

That's me yesterday.

I firmly had a view as to how I would handle a high risk situation full of prompts and triggers and history. I did self talk and affirmations. I told myself a social story with victory at the end. I reviewed my strategies. I was confident. Even with all past failures, I was confident.

But.

All the preparation was nothing.

Trigger.

Old habits, old reactions, bad decisions and worse choices returned. Like a song that you'll never forget, "La La La La La La you're total failure, Oh Oh Oh Oh you're a total fool" that little ditty that goes round in your head chastising you.

That's me.

Right now.

That's me yesterday.

I freaking know better.

I freaking want better.

I freaking an really trying.

But it's so hard. Just so hard.

Changing behaviour is hard.

And consequences, there are many but the worst is the words I now allow myself to call myself and feel justified in doing so.

Everybody can learn new ways of doing things.

I believe that.

Pity that belief doesn't mean squat when you dance to old rhythms does it.

There's always tomorrow.

Always another humiliating failure coming down the pike.

I need another strategy, maybe one that acknowledges that failure is part of journey.

Oh. Gosh. Doesn't that sound like crap?

Think I'll just beat myself up for a few more hours, why not, it's never worked either.

Oh, Oh, Oh, Conversations with Cripples

Three conversations:

1.

At the gym, for exercise, I go up and down the ramp somewhere between 10 and 20 times. I'm not travelling for a bit so I want to do exercise that keeps my 'pushing' skills at their max. It's a long ramp, a good grade, and it really works my muscles. I arrive at the top to a question from a fellow member who had just come over to work on the cable machine at the top of the ramp:

"So, why do you push yourself up and down the ramp. You'd think you'd be tired of pushing all day."

"So, why do you run on the treadmill?"

(pause)

"Oh."

2.

I am at the till having made a purchase, there is a little bit of a line up behind me. I had taken my gloves off so I could complete the transaction. When done, I take a moment to put my gloves back on. I never push without gloves, today it's even more important because my wheels are both wet and dirty. The clerk, looks up at an impatient line-up (putting Christ into Christmas is way easier that putting Christ into fellow shoppers) and asks:

"Why do you wear gloves anyway?"

Gloves on, I roll back to where I can look down at the tellers feet.

"Why do you wear shoes anyway, you're indoors?"

"Oh.

3.

At an informal gathering people are chatting, someone I don't know is there and they are asking their friend about who I am and what I do. Their friend and I aren't friends but we have friends in common and they answer by describing a bit about what I do. Later I am asked by the same person who asked the first question (lots of points if you followed all that) in a mammoth act of ignorance about disability, benefits and the poverty line:

"Can I ask you why you work, surely you could live off the benefits?"

"Do you work?" I ask.

"Yes, I love my job, I ..." when they finish I say.

"I don't understand why you work, surely you could live off unemployment and other benefit packages."

"Oh."

Question for all of you. Are we that alien to them? Are we so far from the norm that they can't see any typical motivations for us? How do people grow so ignorant about people who live in their midst? But I guess this also explains racism, sexism, homophobia, Islamophobia, disphobia, and ableism, huh?

and I'll throw in a 4th one for free:

"Why do you write a blog?"

"Because I enjoy typing."

One of Those Times

So we were headed to the elevator when one of the three women, all pushing their babies in strollers, used the 'R' word in a sentence. As it turned out they ended up right behind us as we waited for the elevator to arrive. The door opens. I turn to both back in and to face them.

Now, you may find this hard to believe but I find it very difficult to confront strangers in situations like these. My heart was pounding in my chest. And the reason I continued, the reason I spoke up, was because my heart was pounding in my chest. I care about this. Nervous or not, I care and my voice is necessary.

I said calmly, "Excuse me," I spoke to them as a group even though I knew which one had used the word, none of them stopped her, which meant all of them did it, listening without complaint is no different than saying it yourself, "I don't mean to enter into your day but I have to, I heard you use the "R" word and I'm asking you as a disabled person to think about the words you use. That is a really hurtful word. It can devastate someone's spirit. So please don't."

They were thunderstruck.

The elevator door was trying to close but jumping back as soon as it started, as if it were scared of me too.

Then one of them, one who did not say the word said, "It wasn't us! I would never, ever, use that word. Ever!"

I had no intention of pointing out the one who had spoken the word, I could see the emotion in the group and felt that now was the time to leave it to group dynamics. I said, "Oh, if it wasn't you, I apologize. I heard the word used behind me and I feel that, as hard as it is, I need to speak up. Everyone deserves to be safe in the world."

I backed in and the door closed.

Even though they denied it and I knew that one of them had said the word, I apologized. It was important to simply not look like an asshat at that point. I didn't want them to easily dismiss me.

Working towards social change sometimes takes more courage than I want to have and the ability to appear calmer than I ever feel.

But there are times when our voices are needed and necessary.

This was one of those times.

Bullies and Bigots and Big Mouths Beware

Social Violence. That's what I call the day to day interactions with bullies and bigots and big mouths. Those people who intrude into my day to make comment on my body, my disability, and my way of being in the world. It's a daily occurrence that I could do without. But, I realized only recently that somethings changed in me.

I've been teaching people with intellectual disabilities about their inner voice and the power they have to down out the sounds of social violence with their own thoughts, their own perceptions and thereby become their own master. They can school themselves about who they are. Often I have had to teach about language of self-positivity to people who are used to reinforcement and praise for behaviour but have not idea about the need we all have for personal acknowledgement. There is a difference. I love teaching this. I love watching the effect of new language on old wounds. I love seeing, sometimes, and almost miraculous response to the training.

I've been teaching this, because I've been doing this for years. Intentionally responding to hateful comments, to words that violate boundaries regarding language of the body, to the purposeful, targeted, attacks in regards to both difference and disability, with new words, different words, coming from a different voice - my own. That voice started out with the volume turned down. It was if I was afraid to wake the anger that grew inside of me, so affirmations were whispered. But now, that voice has become strong enough to do it's job.

The words of others no longer teach me who I am. I had let that happen. I had let them tell me that I was ugly and stupid and fat and useless, and I accepted those words for what they seemed to be - information for me to process. Declarations, in absolute terms, of how I should see myself. Those words did not wound me, they described me, they gave me a language with which I could refer to myself. It was only later, when they coalesced into something dangerous, that I understood the mistake I had made.

The view of other no longer instruct me about what I need to do and who I need to be. I had let that happen. I had tried to fit in. I had tried to blend in with the bland and tone my difference down. I had tried to walk the path set before me and in doing so lost my way. But now, I need no instructor, I alone see my path and I alone determine the speed at which I travel.

This Christmas, out doing shopping and other holiday things, I keep hearing the words and the comments made. The social violence is still attempted. But I am not longer tempted, even slightly, to listen.

I am not done yet.

But I am me, and I have arrived at a stage in my life when that's good enough.

I am not done yet.

But I alone know what needs to be worked on, the goals I have for myself.

Let the bigots and the bullies and the bigmouths have at it, the community is mine too, I cede no space and no territory. You  can't drive me into hiding. I am OUT and now understand exactly what that means. It means that the world is mine as much as it is anyone else's.

And for what they have to say, STFU, no one's listening any more.

9 Years Old: International Day of Disabled PErsons

"I'm bored talking about this, can we talk about something else?" Sadie is only half joking as she's listening to Joe and I talk about how difficult it had been for me to get an egg salad sandwich because of some physical barriers that made it impossible for me to hear the sandwich maker and for her to hear me. Sadie slumped back into her chair and then asked for the topic to be changed.

I get it.

I understand why she wanted the conversation to change. We go out a lot with her and her sister and this is a conversation she has heard over and over and over again. She's 9 years old, an expert on access and accessibility, and she simply doesn't want to hear another conversation about another barrier encountered.

In her opinion access is simple.

She's 9.

She's right.

International Day of Disabled Persons is today. It's not on the news. There were no stories connected with the day. I've seen, outside my own organization, no advertising about anything happening in the city around me. There may be. But it happening in whispers.

Sadie thinks they should just make things that work for everyone.

Sadie thinks that conversations about inaccessibility should be obsolete.

Sadie thinks that we should be able to talk about what we are doing, not the struggles involved.

At Vita, where I work, we will be having an open mike where people with disabilities can come and say what they please about whatever they want. No non-disabled speakers will participate from the podium.

Here's our measure about an event like this:

1) Did disabled people plan it?
2) Did disabled people set the rules?
3) Are all disabled people welcome?
4) Are non-disabled people welcome but made realize it's not their day?

It's simple.

I'd like to go out with the kids and not have that conversation ever again. Not because we are avoiding the topic but because the topic doesn't come up.

International Day of Disabled Persons:

Our voices.

Our choices.

It's really, really, simple.

She Was Exhausted

Mall.

Shopping.

December.

Yikes.

We were doing some last minute shopping for parcels that need to head west on Monday and the place was packed. This makes pushing my chair arduous because I have to be hyper-alert for the walkees who legs seem to simply not know which way they are going next, like the brain whose pilot is on a break and who detached the legs on the way out. Then there's the one's who see me and freak, the dart on this side and then that side, panic in their eyes, trying to be a good person but simply not able to make up their minds which side they should walk on to keep themselves safe and to give me room. All the dashing back and forth is dizzying to watch and nearly impossible to navigate. Sometimes I just stop and say "Please go ahead" and wait until they and their panic have passed before beginning again.

But what I wanted to write about was what I saw happen, and when I intervened, at one of the areas of the mall where people who don't have chairs are given some, they willingly adapt the environment for walkees, so they can rest. I saw a woman with an intellectual disability with her staff. There were two possible places for them to sit. Conveniently the two seats were facing each other. The staff was desperate to give the choice of the two seats to the individual being supported. Now that's cool. But the desperation and eagerness can simply make people slightly wacky.

The staff was in front of the woman with a disability saying, do you want me to sit here, or here; here or here' here or here. Each time she offered she moved her body slightly to indicate which chair her butt would sit in on the simplest command from the woman with the disability. Every time she moved the woman with a disability made an attempt to take a seat but was then blocked by the staff going back and forth and offering a choice in chair.

I couldn't take it.

I have been often blocked by people trying to help me and it's funny. At first.

I stuck my head in, uninvited I know, and said to the staff, "Just offer the choice and then stand still." The staff looked at me, affronted for a second and then, realizing, started to giggle. She offered a choice the woman with a disability sat down, looked at her staff and said, "That was exhausting."

We all laughed.

Hard.

Yep, sometimes our desire to be helpful makes it impossible to see how very unhelpful we have now become.

Fear. It's Coming Again. A Post for World AIDS Day

Fear.

Is lessening.

Because.

We aren't listening.

We, the LGBT+ community, aren't listening to our own history. We've been distracted by the progress made, medically, the advancements made, scientifically, and the benefits resulting, from the research. These are things to celebrate. They are things that have been life giving, life sustaining and life extending. They are modern miracles created in labs by people of determination. We, the LGBT+ community, fought for this, fought for our survival, and to the extent that these are available, we've begun to feel like we've won. But.

Fear.

Is lessening.

Because.

We aren't listening.

We are not listening to our history. We are not listening the the lessons learned from the dark times. We are blinkered by the hope of better medications and new scientific breakthroughs. But the history of this disease isn't only a history of scientific inquiry. It is also a social and political history.

It is a history of abandonment.

It is a history of our disposability.

It is a history of hatred.

People didn't care. Remember that? People just didn't care. We were dying by the thousands and people didn't care. Our lives mattered only to us. Our community was devastated both by disease and by the indifference of others. AIDS became a joke attached to our community. Remember those ugly one liners? Remember the laughter. We were dying and they were laughing.

Punishment. They called the disease a just punishment. For the sin of loving. For the sin of forbidden touch. Our world was falling around us. We couldn't keep up with the deaths. And we were told it was our fault. We were unnatural. We were singularly sinful. We were hated by a just God who finally was taking his wrath out on us. We were dying and they were delighting in our deserved fate.

Research and resources were made available grudgingly. "Let them all die," was the angry response to spending dollars to find a cure or a way to extend life after diagnosis. We had brought it on ourselves with our filthy lifestyle and dollars shouldn't be spent that would end up just encouraging more of that behaviour. The behaviour of loving.

It was the behaviour of loving that galvanized us to fight back. Activists took to the streets. People living with and people dying of AIDS became spokespeople, advocated with a strength that astonished everyone. We took each others ungloved hands, and we marched forward. The behaviour of loving is an amazing force.

Fear.

Is lessening.

Because

We aren't listening.

History tells us that attitudes towards us can turn on a dime. We may have pride parades, we may have become a consumer group, we may be able to marry - but all it takes is a crisis. Of any sort. And the hatred is back. Hurricanes his Florida? Gays caused those. Earthquakes shake the west coast. Gays cause those too. We even have the power to cause freezing cold weather. 

The hate isn't gone.

It's just parked.

It's just waiting to be mobilized.

It's waiting for our complacency. 

But the lessons of our history, remembered today World AIDS day, are important. We need to remember the strategies of resistance, the methods of channeling outrage into change and the ways of coming together. We need to remember the feel of our hands joined together in community. We need to remember those that were lost, those we are still losing, and we must remember them in context of the times in which they lived. The time of laughing and hatred and blame. They died, many of them, to the scorn of the world.

We must remember their scorn.

We must remember their hatred.

We must remember their cruelty.

Because it's coming again.

Fear.

Maintains vigilance.

When.

We've listened.

At The Pool

Independence.

I was chatting with a friend who was telling me about going swimming with his kids at a public pool in Toronto. He goes there regularly and he and his kids love it and the time they get together to just play. He was telling me about something that happened, a funny 'you'll never believe what my kid did' story when he paused. "Have I told you about the guy with Down Syndrome?" he asked. I told him that he had not.

"I've been meaning to," he continued. He dropped the story he was telling and started a new one. He told me about this man with Down Syndrome who goes swimming at the pool. He sees him there all the time and he seems really serious about his swimming, spending most of his time doing laps and swimming hard.

The story wasn't about a guy with Down Syndrome swimming. It was about the fact that he's there at the pool without staff, without family, without anyone. He's just there swimming and doing his laps. He knows the lifeguards and fist pumps them when he sees them but beyond that he's in the pool swimming, lapping back and forth using various strokes.

When he leaves he waves to and says hello to those he knows and then, he's gone.

What's the deal.

My friend said that he had never before seen a person with an intellectual disability alone, happy, and completely independent. He's only every seen people with intellectual disabilities accompanied by staff or some other form of supervision.

He remarked that, unlike those with staff, this guy seemed to just be so free.

He wanted to know if freedom was ever the goal for people with disabilities or did we as a system always set goals that kept us in some kind of control. I bridled a bit at the question but said that I think that we collectively have defined freedom for people with intellectual disabilities in a slightly different way.

But freedom is freedom.

This guy in the pool, no matter what happens during the rest of his life is free there. In that space he's his own person.

Someone, somewhere, parents, staff, friends, who knows, maybe it was just him, decided that liberty was a concept open to him.

It's strange that this is still a radical idea.

But it makes a radical difference.

Weight or Burden?

Yesterday we were at an event with Ruby and Sadie and their mom. It turned out not to be a really 'safe environment' for me. I was subject of both whispered comments and stares. There wasn't a moment, the whole time, even when the main activity was going on, that I wasn't being examined, probed and judged by intense stares of others. It was also an environment that it would have been totally inappropriate for me to confront any one, or indeed, the room as a whole.

But what I noticed wasn't so much what was happening to me, but what was happening to Ruby and Sadie. They were there with me and as such were also stared at. The questions the eyes seemed to be asking of them, "Why are you with that big thing there on wheels." I state it that way because I don't believe I was fully human to any but mine during that time.

But the kids bore it all. It didn't deter them from spending time with me, posing for pictures at various spots in the room, laughing, joking and posing and just being kids.

But I could see that it was work.

I could see that it was intentional.

They knew better, and therefore behaved better, than anyone could have expected them too. I was proud of them for their courage, their defiance and their characters.

Difference brings with it challenges.

For the Different.

And for those who dare to love them.

My difference can be a weight on their shoulders but that doesn't mean I'm a burden. There is a difference. A weight is simply carried and burden is resented.

And so they carried me.

No.

That's not true is it.

It's what we tell ourselves.

And so they carried the weight of other people's prejudices. They stood tall refusing to be bent under the pressure of peers.

They are not exceptional kids.

Loving or caring for someone with a difference or a disability doesn't make someone exceptional.

They are, in stead, kids with fully functional hearts and minds and souls. They are kids who decide for themselves what they will and will not accept. Me the accepted, prejudice they did not.

When I got home I relaxed into the comfort of our home. No stairs or stares in my place. I'm safe. But I took a moment to think about what happened.

One can get used to the courage of those who surround you with love, one can forget the courage it takes to stake a stand every time, every place, every occasion that they are out with you. i don't want to get used to, or forget this. I want to SEE the whole experience of disability and difference and I can't do that unless I see my experience in relationship to those with whom I am in relationship.

Disability makes a difference.

But not just for me.

If you have a mind to ...

If you have a mind too, check out my birthday fundraiser:

Monday's Coming

Photo Description: A bearded wheelchair user in a blue shirt is in his wheelchair on an 'ergonometer' and exercise machine for people to develop upper body strength. It's used by turning two handles, against resistance, one on each side of the machine in a circular motion. 

At the gym yesterday, I don't think I'll ever get over the weirdness of saying that, I was on the ergonometer and working hard. The one at my gym is different than this one and has the capability to be connected to the internet so you can watch things on YouTube. I typically watch and episode of 'Eggheads' a UK quiz show and then a few music videos until I'm done.

The Eggheads had crushed a team and now I was watching a playlist of 'Gay Love Songs' (don't judge me) and know most of them by heart. I try my hardest to not hum or sing along as I am so tempted to do. One of the videos started and somewhere mid video the man singing presents himself with words written all over him. The words were negative slurs about being LGBT+.. I noticed movement over my shoulder and immediately felt incredible fear. Was I going to get the shit beaten out of me?

Calming myself I noticed that a boy of about 14 was standing behind me his eyes glued to the screen. The video progressed and by the time the two singers, a man and a woman, had washed horrible words off their bodies, he was standing beside me, as if I wasn't there, watching the screen. He couldn't hear the music, he had no idea what was being said.

I'm done mid way thought the video, my arms don't feel like doing another turn but I dug down and we watched the video together neither speaking to each other. When the video was over, I took out my earphones and unplugged them.

"I wish I could do that," he said, "wash the words away, I mean."

"Is it bad at school," I asked.

He nodded.

"It gets better," I said feeling the triteness of those words, the future looms large for those with power and privilege, they vision themselves in a future that's bright and shiny. The future for those who are being hurt flickers like a light just about to die.

He turned to leave, and I said, "I'm sorry, that wasn't helpful. Let me try again. 'What is happening to you is wrong, those who do it are wrong, they are jerks whose aim is to hurt you and to humiliate you. They need to see you weak. Try on pride, it's the only weapon you have right now to protect yourself. If you can find someone safe to talk to, find them, talk to them."

His smile, when he thanked me was so sad.

It was Sunday.

School was tomorrow.

Words hold power.

"No Bullying Tolerated."

Words mock themselves when in saying them, the system believes the work is done.

A Demonstration and A Suggestion

I'm going to tell you what we did yesterday, but I'm a wee bit worried about doing so. I don't want you to think I'm bragging or showing off in any way. That's not the point of this post. I just want to demonstrate one thing and suggest one thing. First I want to demonstrate how living life is an education, if you pay attention, that can change behaviours and create new patterns. I'll make the suggestion at the end of this post.

Yesterday as we went into the grocery store the police were there. They were outside the store at a table and they had parked a huge cruiser of some kind in front of the store. Interestingly, they parked it exactly between the ramp up in and the ramp down out. That impressed me. They were doing a food drive saying that they wanted to fill the cruiser to the brim with food for the food bank.

I pushed past them and returned their hello as I did so. Immediately inside the store they had pre-bundled bags of food in various price levels. This store always does this and we've bought them before and the have the three p's of poverty in the sack. Peanut butter, Pasta and Pasta Sauce. I pushed on into the store as Joe went to get a cart. I turned to face the door and wait for him, I saw him pick up a couple of bags and I waved at him to put them back. I had had a flash of memory and I wanted to do something different. He returned the bags to the shelf and came in with a question on his face.

"Do you remember," I asked him, "when we were in San Francisco earlier this year, in our usual grocery store?" We had gone there to pick up some groceries, it's in an area of town known for the obvious homelessness and poverty of some of those in the area. Joe had nodded in response to my question. "Do you remember what they locked up and what they told us about it?" We had gone to buy some shaving cream and found that the whole aisle of personal hygiene products were under lock and key.

This store had a whole aisle stuffed full of booze, but it was the deodorants, the shampoos, the feminine hygiene products that were under lock and key. When we asked why this stuff was locked up we were told that these were the most often stolen by people in need. They wanted them for when they were trying to get a job or trying to get clean or trying to keep their kids clean. This was a revelation to me.

So, we didn't buy the prepackaged stuff that would guarantee that only a few of the food back shelves would be full. We hit the hygiene aisle hard. Tooth brushes and tooth paste, deodorants, body washes, shampoos, toilet paper and soap all flew into the cart. Then we went for the feminine hygiene products and stood there, two gay men, who have never bought these in our lives, looking at a wall of choices and having no idea where to start with choosing. In other circumstances when I need to make a decision, I ask people. I felt that stopping a woman who was shopping and asking her to explain to us what might be the best choice for an anonymous recipient was a tad inappropriate. So, we picked on that we both agreed the commercials for assured us that, while using, they could ride and bike and wear a white bathing suit. After that we bought a bag of dog food and a bag of cat food, people do have pets. Finally, the only food we bought was three huge boxes of cereal. Family economy size suckers that looked like they'd feed a family of six for a millennium.

When we were done we did our own shopping and then headed to the check out. There had been lots of sales in the store that day so our donation dollars had gone a long way. We sorted our groceries into our cloth bags and the donation stuff into plastic bags that we could hand over. There were 7 bags, the toilet paper and the cereal taking a number of bags.

We went back out to the police and by then they were surrounded by the pre-packaged bags. We needed their help in getting the stuff out of the bag and keeping everything sorted. I told them about what had happened in San Francisco and why they were picking up the stuff they were picking up. They knew, of course, of the need for these things.

They thanked us.

We thanked them for doing the drive and helping us to remember this part of the holidays.

We got in the car and felt good, we'd done something completely different than we'd ever done before and we did it because we paid attention to what we learned this year. We knew that the stuff we bought would be appreciated.

I am NOT saying, "Don't buy food for the food bank." I am also NOT saying, "Don't buy the pre-packaged bags." Of course food is the major part of what FOOD banks need. And pre-packaged bags are easy and convenient. I'm just suggesting that when you do buy for the food bank, maybe throw in some deodorant and shampoo, or some feminine hygiene products, or anything really that someone may not be able to buy because they spend all their resources on food or housing. Poverty takes a toll on everything.

We'd had fun doing the shopping, it felt like Christmas, and we felt like we'd taken a key to that locked up stuff in the store that we'd gone into and said, "go head, grab what you need."

That's an awesome thing to be able to do. 

Blood On The Beach

"I feel stupid all the time. I didn't feel stupid today."

This may be the best compliment I've ever gotten from someone with a disability who attended one of my self-advocate sessions this year. We had a short conversation after that statement was made. It was bit of a rush because the class was over and their ride was impatiently waiting for them to come. What made them feel stupid wasn't the regular kind of challenges and obstacles that are put in front of people with intellectual disabilities, no, this person lived within a system, with paid support providers, who made them feel stupid all the time.

I watched them leave and I saw the angry face of the staff who'd been kept waiting a few moments. Those few moments, the face showed angrily, were an inconvenience. The person I'd been speaking to was an inconvenience. Paid time or no, that time did not belong to the individual in service, it belonged to the staff who clearly had better things to do.

It concerns me that our system is set up to serve people with intellectual disabilities but ends up serving others needs:

- for employment

- for power

- for paper

- for social contact with other staff

- for control of the unruly

Of course I know that there are good staff out there, a lot of them. I know that. This person must have in their lives staff who are sensitive and who take time. That's the scariest part of this. The deep, deep, caring of of some of the best people in the world wasn't enough for them to feel relief from a sense of inadequacy. It's not enough that some are good. It's not enough that many are good.

We all know, from living in the real world, that sometimes it can take just one person to make us feel small, and stupid, and ugly, and worthless. We all know that no matter how many people love us and support us, that that feeling of being utterly and completely unworthy can dog us for a lifetime.

Intentional goodness.

Intentional respect.

This is what needs to govern our days.

"I pledge today that I will control my temper and my prejudices. I pledge today that I will make time to make others feel valuable and worthy. I pledge today that my tone will flow from my intentional desire to be respectful. I pledge today that I will watch my words, govern my actions, and control my impulse to impatience. I pledge today, to be a good person in relationship to those I serve, those I work with, and myself."

I read this every morning when I get up.

It's simple.

But I need to be reminded.

Because I am a human being and human beings have a penchant for cruelty and domination and anger. Human beings who have power over other human beings most often abuse it. I know that.

I've been hurt before.

That is lesson enough.

So I remind myself what it is to be in relationship to others. To be in service to others.

Because one good person isn't enough.

Two aren't enough.

We need to strive for there to be enough voices within the social service system that give the message of worthiness and value and importance to those who get constant messages of disapproval and unwelcome out there. We need to be safe harbour.

We. Need. To. Be. Safe. Harbour.

We are or we aren't.

I choose to try each day to end the day, without blood on the beach.

Contradictions

The existence of ramps and cut curbs does not guarantee the existence of accessibility. Ramps and other adaptations are there because of legal requirements in regards to disability and need for access. Getting in and being welcome when you are in are different things.

We live in an era of contradictions.

We are aware that 'no' means 'no' but we continue to act as if 'no' means 'press on.'

We are aware that white men are most likely to commit mass shootings but black men are most likely to be shot by the police.

We are aware of privacy but post pictures of fat people eating in food courts with witty one liners under the photo.

We are aware of and even laud the concepts of 'welcome' and 'generosity' but we post memes against refugees and those of other faiths.

We are aware of the need for kindness and yet post pictures ridiculing scooter users in Walmart.

We are aware of bullying and yet we continue to do so at every turn.

We live in an era where we 'tut' the behaviour of others and spend no time governing our own behaviour.

Nothing changes.

Awareness doesn't mean change.

I have been travelling a lot. I have been working hard a lot. My job here in Toronto and my job that takes me great distances are both demanding. I get tired. I am tired.

Today I have to be out a lot.

I have to go into the world and push around places and go to appointments and do all the things that people do. 

And I don't want to.

I don't feel up to it.

The physical aspect of going out is something I'd enjoy. I like pushing myself long distances. I like feeling powerful in my ability to get where I'm going. I can push up ramps and roll down cut curbs. It's all good.

But I don't feel up to the other shit.

In a world where people are scandalized by reports of brutal bullying in schools and universities and work sites, scandal exists to titillate not illuminate the pervasiveness of the problem.

I am going out today because I have to.

There are things that need to be done.

But I don't feel up to the stares, from people who know that staring is wrong.

I don't feel up to the intrusive comments about my body, from people who know that shaming is wrong.

I don't feel up to the casual dismissiveness of my humanity from people who claim to have no prejudice.

So I'll go up ramps, I traverse cut curbs, I'll do all that.

But.

Aware does not mean Awoke.

So, I'll need to dress up.

Put on my self esteem.

Pull up my self respect.

Put out my self regard and wrap it round me, tight.

Because I'm going out into the world, feeling vulnerable to those I meet. And I will protect myself. I know that I have value. I just hope and pray when I get home tonight, I'll still believe that. 

FN

Travel back 25 years in time. Maybe a few years more. I was a Behaviour Therapist working with people with intellectual disabilities primarily in residential settings. I had been invited for dinner at one of the homes and had eagerly accepted. I wanted to just sit and be with people rather than have an agenda for every moment.

Every one of the people with disabilities in that house was fully verbal and very able to communicate their lives in stories. When dinner began it was much different than I expected. The food was good, and plentiful, people were eating it with relish. But there was no conversation. None. All social contact or requests for help were directed solely to one of the staff or myself. They looked at each other for nothing. One person, wanting the salt, asked the staff for salt even though it wasn't near her, it was across the table right by the elbow of one of the other people with disabilities who lived in the home.

Integrated with staff.

Isolated from others.

When I first mentioned this it was suggested that this was normal because they wanted to interact with the valued, not the devalued. It was further suggested that this was healthy behaviour and evidence that we needed to move quickly towards integration. It was finally suggested that my feelings that something was wrong here suggested that I was stuck in the old model of serving people with disabilities - that 'Normalization' meant that people with disabilities shouldn't be relating to one another or forming attachments with one another.

Not for the first time in my life I thought 'fuck normalization.'

I went back to the home and sat with with the people who lived there and talked to them about what they wanted. They were clear that interactions with each other had been discouraged and interactions with non-disabled people, only, had been encouraged. They were afraid to talk to each other and didn't even know how anymore.

That stopped.

After meeting with staff and meeting with various people who wanted to have a say in whether or not disabled people could talk to one another, I was given the approval to go ahead. It took but a week to get conversation going at the table that included everyone and excluded no one.

Why am I telling you this now?

At Vita, where work I happened by a group of people with disabilities together, waiting for an event to start. They had all gathered before I got there, as I approached I heard this buzz of conversation and the occasional burst of laughter. This was a group of people who enjoyed each other's company. When I turned the corner I saw that it was a group of people with intellectual disabilities. Not a staff anywhere in sight.

It's moments like these that affirm the rise of the disability community. It's moments like these that affirm that pride, and identity are at heart of the disability movement. It's moments like these that make it clear that, despite our philosophy and ideals, the people who have disabilities are becoming a people, a community and a movement.

Some days it's great to go to work.

Bullied by Kindness

We went to the movies the other day, to see Bohemian Rhapsody, and when I got to the door of the theatre it was being held open by an employee there with Down Syndrome. I've seen him before and greeted him with a quick hello and a thanks for holding the door. I entered. At the bottom of the carpeted ramp up into the theatre I stopped to brace myself for the climb. Several people coming by asked if they could help, I said 'no,' and all respected my desire to climb unassisted.

It took a while to get to the top so I heard how the man with Down Syndrome was spoken to. He was essentially bullied with kindness. Soft tones asked him how he was doing, patronizing tones thanked him for doing such a good job with door holding open behaviour,  sad tones - communicating that his life is a tragedy - asked him how he was doing. He was stoic in his silent response.

Finally the last person that was coming in that stream was in and I was nearly at the top of the ramp, he caught up to me just as I crested the hill. He walked by with a dignity that others simply couldn't see. He was a man at work, doing a real job, with a real purpose. He wasn't the child/man, the infant mind/adult body, that he'd been treated as. No. He was an adult at work.

What he must bear.

What control does it take to make it through a shift?

We talk about bullying and name calling. But there is another kind of bullying isn't there? The kind where kind words cut down, where soft tones hit hard, were perceptions of 'less than' have motivated a sympathy not needed at all.

Bullied by kindness.

Or what they call kindness.

It's just a matter of perception, I'm guessing he'd call it cruelty.

... is me: the final post

It comes to an end.

The saga of my chair being stolen, please don't tell me it wasn't, from the door at the airplane is done. For better or worse, it's done. I have letters to write, I have complaints to make, I have compliments to send, but that's simply wrapping it up.

When I got home I spoke to Ruby and Sadie and explained everything that happened to us. They already understood how hard the trip was because we came home to a bouquet of flowers welcoming us safely home. But now armed with the facts, the physical and the emotional ones, I asked them to come up with a way of cleansing the chair from the touch and presence of the woman who had sat in it.

They were all for it.

We held the ceremony last night.

I don't know if it worked.

I haven't sat back in it yet. 

But I do know that we all tried, we all cared, and we all were brought together.

We needed to be.

Because I have been traumatized and, to be honest, I don't know if our little ceremony was for the chair or for me. And what people will never understand is, much of the time, the chair is me.

I am not my chair, but my chair most definitely is me. And it is that me that was there last night, us together, hoping for a bit of a miracle. I want to be alone in my chair.

But we'll see what the morrow brings.

(Thank you for enduring the story of what happened, this is the final post in that series.)

What Rosa Did: Second To Last Post on My Stolen Chair

The first guy offered me an apology.

He was there to help get me from one place to another and, after finding out what had happened, that my chair had been stolen, he understood why I was so upset. I know he wanted to do something, anything, to help my spirits, or to make a connection. He offered me apology.

I pushed back my anger.

I didn't want his apology. He didn't take my chair. He wasn't responsible for it going missing. I didn't need his apology, and even as I understood that apology was the only thing he could think to do, it only served to add fuel to the fire inside me.

The next guy offered me sympathy.

He, too, wanted to offer me something, to let me know that he understood that something big and traumatic had happened in my life. So he told me how sorry he was that this had happened to me. But, I didn't want sympathy, I wasn't sad. I didn't want sympathy because it didn't fit. It, like apology, added fuel to the furnace heating up my anxiety and pushing calm far from shore.

Then came Rosa.

She strode over to me. She listened hard to what I had to say. She listened to me talk about my present dilemma, and my worries about what happens next, what happens when I get home, what does my immediate future look like. I'd had my legs severed from my hips. I was BLEEDING.

First she offered me empathy.

She let me know that she felt with me. When she leaned down to look in my eyes, I knew she felt what I was feeling. She listened in such a way to give me permission to talk, not just about the chair and the theft but about my fears and anxieties and worries about my whole life. She said things that let me know that she was feeling with me, not for me.

Then she offered me compassion.

She allowed me to feel what I was feeling without question or comment. Her tone remained professional, but kind; she let me know that there was someone, now, involved in this crisis whose job it was to help that actually cared. Cared from the perspective of getting what this meant to me, how big it was.

Then she offered me a little bit of outrage.

This should not have happened to me. It was wrong for someone to take my chair. She was the first, and maybe the only person, who didn't try to give the thief an excuse "They probably thought it was an airport chair." She didn't ask me to understand or care about the person who took my chair. She let it be known that this angered her too. Oh, how I needed to hear that.

Then she offered me a promise.

If there was a way for this chair to be found. She would find it. She would be single-minded in her determination to help me. And I believed her. I believed her because SHE had the fire in her eyes. She took the fire from my heart and lit it in her own. I didn't believe that my chair would be found. But I believed that she would exhaust all avenues in the search for it.

When I finally left the airport, Rosa had brought me down to a place where I could function, I could think, I could talk, I could take action. She gave me back me. Chair or no, I was back in my body. Traumatized, yes. But I was back.

Homecoming: What Happened Next

A knock comes on the door.

It's room service.

I am still sitting in the old wheelchair. I don't want to get used to it. I don't want my body to give in. The room service person is efficient and friendly. It was hard to bear.

GET OUT OF THE ROOM YOU ARE THE WRONG PERSON.

Seldom do I lose my appetite. The food looks good but I don't want it. I pick up the phone to call the airport again when there is a sharp rap at the door.

Joe opens the door to find a smiling young man, who seems to understand the importance of what's going on and is glad to be part of the drama. "I have one wheelchair here for you."

The chair looked wounded.

Like it wanted to cry.

Sitting alone in the hallway.

We swapped the old chair for my chair and then, I was sitting in my own chair. 7 hours later we are reunited.

I didn't sleep well that night. Something was bothering me.

The next day I am pushing around, going to my meetings and various events. Something still bothers me. The chair feels different. I get out and we examine it from top to bottom. It seems fine.

Then, as I'm pushing, I realize.

My wheelchair has only been sat in by people I love. Joe. Ruby. Sadie. Marissa. No one else. Not a single other person.

But now, when I sit in it, I can feel a presence.

No. I can. Really.

A presence of someone who did this to me.

I'm not sure how long it will take to go away, if it ever does. But my chair doesn't feel quite like home anymore. It's not quite mine anymore.

But it's here with me now.

Again, Silence: What Happens Next

The airport wheelchair feels wrong to me. It holds me without supporting me. It has angles I'm not used to. It fulfills a function, that's all. I ask Joe if we could go to the bar. I want to be out of the room, out where there is some noise and distraction, out where there are people just living ordinary lives and not appreciating what that means. People who don't have to be grateful every moment of every day for the mobility they have.

I insist on pushing this clunker of a chair, it's hard, it's heavy and it's not built for speed. The extra weight has me sinking into plush hotel carpet, but I push myself anyways. I will not, in that way, be defeated. We get to the bar and order, tea for me, a draught beer for Joe. The bartender asks about our day. Well she asked so we told her. She was shocked and horrified.

The phone rings three times! It never rings that often at that time of day. Once it was our pharmacy about a pick up. Once it was from a phone company wanting to talk to us about service. Once it was a wrong number. Each time my heart did a flip. Was it information about my chair? Was it information about what was going to happen when we returned home? Was it about a replacement wheelchair to use for now?

When it rings a fourth time I'd become immune but then I notice it's an Arizona number calling. I answer. The woman who was helping me with all of this was on the line. She had news. My chair had been found, abandoned in the rental car center. Without the cushion, and sitting on Velcro, it must have been too uncomfortable for their use so they dumped it. The tag placed by the airline was still on the chair.

"I will talk to your airline and get it back to you asap."

I stumble to thank her.

I try not to cry again.

But I do.

We finished our drinks and rushed back to the room. We didn't want to miss the chair's arrival even though we knew it hadn't left the airport yet.

An hour and a half later, the chair was still not here.

The hotel is about 20 minutes from the airport.

We stare at the phone.

It doesn't ring.

Silence.

Silence: What Happened Next

As is my habit, upon arriving at the airplane door, I spoke to the lead flight attendant. I pointed out that I was using my own chair, that it would go down to the belly of the plane and then be brought  back up for me. I told her that twice before people have attempted to steal my chair and asked her to keep an eye out when the chair comes up. She, as people do, dismissed what I said telling me that no one would do that, I assured her that they would and they have.

Our seats were in row 43 of a 42 row plane. I'm not kidding. We landed and waited for every single other person to get off. When I get to the front my chair is not there. I talk to the people who brought chairs up, I was told that my chair was taking by a woman with long hair and a man travelling with her.

Panic.

I pointed at the woman who I had spoken to when boarding and told her that I held her responsible. I had informed her, she was at the front the whole time and she simply watched as my chair was taken away. The folks who work in accessible services at the airport bring me a kind of chair that I can't sit in. Finally one is found and I am taken up to the gate area. Several people surround me, I am extremely distraught. My chair is new, I love it, it was my first custom built chair.

People are sent running down to baggage to see if they can find the chair down there. The come back empty handed. I don't know what to do, I'm a long way from home. I don't know how to get to my hotel and what I'm going to do when there. I ask a manager type person if I could use the airport chair for a few days and bring it back. He calls and speaks to a director.

I await her decision.

Sitting at the conveyor belt watching luggage come up I am suddenly overcome and overwhelmed and I break down. I am sobbing in the airport chair. I know people are staring. Joe puts his hand on my shoulder and just lets me grieve for a few minutes until I can put myself back together.

I speak to a manager from the airline, a voice from Winnipeg trying to figure out if I need a new chair to replace the others how she could facilitate that, and then it comes to filling out the forms for both my chair and our luggage which hadn't arrived. Before the forms were filled out, our luggage was returned.

It's been a long time, there is no sign of my chair. Joe goes and gets a rental car, from a company that had lost our prepaid reservation, and arrives after they find a car that I can get into. I have been allowed to take the airport chair with a promise to bring it back when we fly home. It weighs about 35 pounds, versus my stolen chair which weighed 8 pounds.

We get to the hotel, we'd requested an early check in, and are told our room isn't ready. The check in time is 4:00 and we don't get the room until after 5:pm.

After arriving in the room.

We both sit quietly.

No TV.

No Internet.

Just silence.

A Hellish Day: Part One

We are safe. But not yet quite sound.

Yesterday morning the alarm didn't go off, my fault, and we were then in a panicked rush to get to the airport. Finally made it through bag drop off, security and then customs. Made it to the plane just in time for boarding. Discovered a mistake on the ticket regarding seating. The attendant who assisted me worked really hard to find us a seat that we could use. She did and we made it onto the plane.

This was a plane we'd not been on before and it was cramped. Really cramped. I sat down in my seat and got ready to leave. A fellow, a good looking guy, came and sat in the seat in front of me. Maybe 10 minutes into a 5 minute flight he flopped his seat way back. Now, I'm in pain and he knew it because I yelped when the seat crushed my knee. He simply wouldn't budge. It was a morning flight, no one else had their seat back except the guy in front of me.

Not only that he would throw his body back against the seat like he was telling me that I had to move my knee. I couldn't. He seemed to intentionally want to physically hurt me. No, I didn't speak to him about this. It's his right to put the seat back, and, frankly, I was really tired from just trying to get to the airport and onto the plane.

I had to get up a couple times to use the toilet and did so by slithering up the back of my chair pulling my body away from his chair. A remarkable feat of engineering I'd say. When I got back I had to speak to him. I asked if he'd put his seat up so I could get into my seat. He looked up and stared at me, I could see he was deciding if he'd do it or not. For a tense 5 minutes I wondered why he was so angry at me, why wouldn't he respond to a civil request. He turned from me raised the seat and I sat down. Then he slammed the seat back as hard as he could and, for a moment, the pain was unbearable.

5 hours I sat in pain.

When we landed I was jubilant, but this would turn out to not even being in the running on my list of things that went wrong that day.

On Our Way to Ellen's

When in New York City, we stayed at a hotel in Times Square. We did this for a couple of reasons, one was we love the energy of Times Square and two was that it was only a short walk to go to Ellen's Stardust Diner. We try to go there every time we go there. It's touristy and the line ups are long, but it's a fun place where young people studying voice and acting can work and earn some money while going to classes or auditions. They serve tables but they also get to sing and perform for the customers there. We make an appreciative crowd. So, that was our goal.

Lots of the curb cuts have been renovated from dangerous drops to smooth transitions. It's an uphill push on fairly slanted sidewalks so it's not easy. Further, some of the curb cuts, the further you got from Times Square had not been renovated and were steep and in poor repair. One street corner had no cut curb at all. But we were taking it all in stride and Joe walked with my as I fought to get there under my own power.

Then one of the curbs I was pushing up was really steep. I was making my way up. This is where I find that my right arm is stronger than my left arm and because of that my chair turns slightly. What I do then is just get the right side of the chair up and then use body motion and the left arm to finish the job. However a fellow going the other way, sees me struggle and leans right over me to grab the handle behind me. He is right in my face, and because of the way his body was poised at the moment he had no strength to help. I asked him, my lips very nearly touching his sweater, to let go of me.

It took several asks but he did finally let go, annoyed he hadn't helped an annoyed that I'm annoyed. But we say nothing to each other and he's gone. But now I'm stuck, I have lost momentum and my left arm just isn't going to make it. People are gathering to watch. I let out a grunt and pushed as hard as I could and I popped onto the sidewalk and we went on our way.

We got to the diner and when it was our turn we were taken in, the place was packed. We were directed to a table and as I turned to follow the waitstaff, one of the other staff reached to 'help' me push there. She was cut short, "Did he ask for help?" "No." "Then leave him alone, you don't have consent." The speaker was one of the waitstaff who would be performing later. I don't know where he learned what he learned, but I'm glad he did. I had not seen the 'coming help' but he had and he spoke up.

This post is not about the man who tried to pull me up a curb.

This post is about the man who insisted on my right to consent.

Two different men.

Two very different people.

Anna One

We were in Time Square in New York City just before a street show was about to start. An area had been made clear so that 5 or 6 performers had room to move. And move they did. They did a mix between gymnastics, dance and acrobatics. They had a smooth patter that was fun and engaging. They poked fun at, with probably more dexterity than any physical move they made, racists and racism. They were strategic and they kept us laughing so that we wouldn't realize that we would have to think of them and their words on the way home.

All of the performers were black, were lean, and very, very strong. Their physical prowess as they did some of the moves was literally awe inspiring. One of the fellows that I thought was a support guy was suddenly yanked into the limelight. He was big, much bigger than the others. They acknowledged, as he did, that he tended more to fat than to lean. The group encouraged him to dance and the audience, on cue, started to laugh. He was obviously not a peer of the others. So, he got down and did a couple of somersaults, awkwardly, and the crowd was now laughing with more derisive tone.

Then he returns to where he was when he was shoved back out. The music went up and he danced and moved and owned the space he was in. I was, for a moment, in love with him. He had played the audience. Played to the stereotypes they coddled in their minds. He let them be openly prejudiced and then shut them down, shut them up. It was A.W. E. S. O. M. E.

I love moments like that.

I love people like him.

That right there is civil liberties work.

What they did there is as important as any speech anyone has ever made.

Change begins with challenge. Doesn't matter that it's set to music.

Conversations

Sometimes the most powerful conversations need only a message, not sound, not words, not speech, just a message.

We went to the mall after work today because I'd been so sedentary all day and wanted some physical movement. We arrived, we parked, we went in. As we moved through the mall the bag on the back of my chair slipped off one handle and was dangling from the other. Neither of us noticed because we were deep in conversation about Christmas. We didn't even hear when my notepad of paper fell to the floor behind me.

I was lucky because there was nothing on the pad, no notes, no thoughts, it was empty. I could have easily just lost it and never known what happened to it, but it was picked up by a man with an intellectual disability. He broke away from his staff, ran to get the pad and then picked it up and ran again to catch up with us and give me the pad. When he appeared beside me with the pad, I was momentarily confused. I didn't realize it was my paper and that it had fallen from my bag. He pointed at the back of the chair and instantly both Joe and I knew what happened.

I was thanking him when his staff arrived.

They seemed pretty good because they didn't jump in between us and begin to explain everything. I understood the story just because of the bag, the pad and his retrieval of it. When I finished saying thank you he made a slight bow in return.

He wasn't done. He pointed at my chair and then pointed at himself. I asked tentatively, "are you saying that we both have disabilities?" he smiled.

Then he pointed at himself and me, back and forth three or four more times. Then he raised his arm and made like a bodybuilder showing off a bicep. He did that twice, back and forth between him and me and then the bicep.

The staff were fighting to keep silent, and they won the fight.

They knew this was his conversation not theirs.

Knowing what belongs to you and what doesn't is the most important working skill that direct support professionals need.

I ended the conversation by pointing back and forth with him and then making a muscle.

I wanted to say, "together we are stronger" too.

He smiled, turned to his staff and indicated he wanted to go. They went along with him into the mall itself. I saw the staff a bit later near the food court, now there were two others with them. They must have been somewhere else in the mall and meeting up here.

He saw me, smiled, and made a muscle.

Stronger.

Together.

And we are.

And Again

I don't mean to bore you with my take on life with a disability but there are themes that are ever present in our lives. If we were a symphony we'd be 'Bolero' where the same melodic strain repeats itself over and over but faster and louder each time.

So, here we go again.

We go in to the resto/bar one building over from our hotel. We are told that if we were going to be seated at the bar, which had been our request, that we could just seat ourselves. We found a spot, pulled out a chair to make room and I pulled in. Now it was a high bar, but I'm used to that, don't mind it at all.

The bartender rushes over to us and tells us that they have a lowered bar on the other side. He then disappears and we can see him asking people to leave that space so I could have it. I don't want them to be disturbed, I don't want to be the issue. I signal to them and then to him that I'm fine where I am.

He shakes his head and leaves the bar area.

A few seconds later the manager appears beside me to tell me about the lowered bar and tells me that I will be more comfortable there. I tell him that I may be physically more comfortable there but I am not comfortable with moving several people so we can use that section of the bar. He tells me that they won't mind, how he knows this I don't know, and that the lowered bay was installed for disabled guests. I say, essentially, thanks, but no thanks, I do not want to become part of their story about being at the bar and being required to move. I am fine where I am.

Annoyance all round, but we are finally served.

I ask you this: if they installed this for disabled people why, when almost the whole rest of the bar was empty, did they let non-disabled people choose to sit there?

I further ask: Why does this happen all the time? Why does the music just go faster and faster?

We left after one beer for Joe and one tea for me and we left with quizzical looks at our backs from people who wondered why I wasn't compliant to the demand that I sit where I'm told.

Fuck compliance.

the issue

A few days ago I had to go down to Service Ontario to renew my driver's licence and my health card. When I got there the line up was out the door. I had made time for this and though I was tempted to just come back later, later usually turns into "Oh my gosh, my licence has expired." So I got in line.

Shortly after I took my place a woman comes flying out of the door and headed straight for me. "I've told them that you are here and they are going to come and get you so you don't have to wait."

What?

I told her that I was in the line up and I wasn't going to jump the line. "They don't mind," she said, indicating the staff inside. I said, "Well, they all do!" indicating people in the line up. And, of course, everyone turns and says that they don't mind if I go ahead. Shit. Why does disability turn people into liars? Of course they would mind, people who jump lines are loathed in the moment, it's a natural phenomenon. The first moment cave dwellers put up ropes so the people could line up to see the 'wall art' the distaste for line jumpers was born.

I said again that I would wait my turn. She said, not hearing me, "They will come and get you soon."

Now, I have everyone's attention. I'm a problem. I'm not the cripple they want me to be. I stay in my chair wondering why the hell she thought she needed to intervene.

Then, they do come for me and tell me that I could come next. There are still lots of folks in front of me. I explain that I will stay where I am, wait my turn, I don't want any special treatment, I don't need any extra care. "Your choice," the clerk said, and I said, "Yes, it is."

I'm surrounded by tension.

Again, against my will, I'm the issue.

I want to stop being the issue and just be an individual.

Is that really so much to ask?

Ableist Privilege Explained

We were going to meet friends for lunch, Joe wanted to pop up to the room to drop off stuff we didn't need. I pulled over and waited, not realizing that I had backed into place beside a luggage cart. As soon as I saw it I fled and parked much further away. I sat there with my heart beating in my chest. Panic.

I noted that beside the luggage cart was a popular place for the non-disabled to wait for each other. Three or four people did so in the time I waited for Joe. I knew that with the conference in the hotel the elevators caused a bit of a wait time. So I watched them stand there, no anxiety. No fear.

But.

I have been mistaken for luggage.

I have been treated like luggage.

I have been transformed into a thing to be moved.

I know what it's like to assume my humanity when others do not.

I have had my chair grabbed and shoved, against my will.

I have been made to move to get out of the way when I was already out of the way.

I have been referred to as a tripping hazard by overzealous security guards.

But.

I am not luggage.

Here's the thing. Ableist privilege is being able to stand by a luggage cart with the surety that passers by can see the difference.

The. Difference.

Alien. Human

Okay, at this conference I presented on Disability Informed Treatment (Support) which asks service providers or clinicians to firstly acknowledge disability in a real way and then to see the disabled person in context of the system that supports them, the society that rejects them, and the power dynamic you are in with them. It's a big ask, made particularly difficult by so many peoples' reluctance to acknowledge disability as a real, lived, phenomenon. We are not 'just like every one else." We are different and we live in a different physical and social reality. But I'm getting off track here. Disability makes a difference in many ways is what it all boils down to. I thought that this was a difficult concept because it upsets as many people as it enlightens. 

Then this happened.

I wanted some exercise, real exercise, and as it was a beautiful day, headed out to go for a push over to the Pacific Centre Mall and then do a tour of the mall. It's not far away but I have to push up a steep incline and then make it, as it turns out, along a very difficult few blocks. Every single curb cut is bad. Twice I had to take the feet off my chair, get down, put them back on and then make it across in the remaining 3 seconds. Once across I have to make it up curb cuts that are very steep and which catch either my foot pedals or my anti tip thingies on the back. It's a journey.

We make it.

Once in the mall we wander around and then decide to stop for tea. We want to go back to a place that we saw but couldn't remember how we got to it. We stopped and asked a young man at the information desk in the mall. He quickly gave us directions and we were on our way. Nearly there I stopped and said to Joe, we should have asked him a different question. I wondered if there were an underground passageway that would go towards the hotel and bring us up further along. Could we remove some of our outside journey and reduce travel on those curb cuts?

We went back to him. We joked with him about returning so quickly and then asked the question. He told us that what we had envisioned didn't exist we were as far as the underground would take us. We had mentioned the curb cuts and he acknowledged that they weren't great on Georgia Street. He then offered the first of two solutions. He suggested taking the Skytrain over one stop. After he gave us directions I asked him how big the gap was onto the train because my chair has very small front tires. He didn't know and saw that that could be a problem.

"Give me a minute," he said, and then paused and thought.

Then after thinking about travel in a wheelchair, curb cuts and the need to have a decent surface to roll on he said, "If you go down to the end of the mall, you can take the elevator up and be on Robson street. There is a lot more pedestrian traffic on Robson and the city does much more upkeep on that stretch of road so I'm guessing the curb cuts will be in better shape and the sidewalks easier to move on. Then you just have to turn on your street to go down to the hotel."

I stared at him.

We both did.

This might have been the very best advice I've ever gotten from someone in an information giving capacity in a city anywhere. He thought through a potential solution. He looked at my request from the point of view of travel in a wheelchair. He bothered to think about it. My question mattered to him. He gave it attention. Even if it turned out not to be helpful, it was amazing for someone to give disability informed advice.

So, we did what he suggested, we hit Robson. Didn't have a problem with a single curb cut. The sidewalks were in good repair. We made it back to our street in minutes. I kept on going along Robson, Joe called out that I was going the wrong way. I kept going, I didn't answer because I was a bit breathless, he caught up to me and I explained. "I always have to push indoors because outdoors is so inaccessible, I'm going to keep going for a bit just for the joy of it." So we kept going.

When we were both a little tired, we turned around and headed back and got to the hotel with no problems.

Because someone bothered to think about my question. Because someone valued me as a person worthy of giving some thought to. Because someone actually gave a damn about their job as an information giver. Because it wasn't difficult for him to see that my perspective was different but not alien. Human.

I'm going to contact the Pacific Centre Mall and send them this blog. 

This happened on October 19th, between 3 and 4. He was on shift alone but was then joined by a co-worker.

Please thank him for me will you.