Tuesday, January 31, 2017

The Real World

I've been doing some research on the social experiences of people with disabilities in "community living." Now I haven't narrowed my research at this point, as I will soon, to people with intellectual disabilities, so I've just been browsing around reading, often upsetting material. One that I'm reading right now discussed 'situational vulnerability' for people with disabilities and described this as being certain hotspots where violence is likely to occur. I leaned forward when I got to this section, I was really interested to see what was listed and particularly, and more importantly, what wasn't listed. Where, in our community, are people with disabilities less likely or not likely to be targeted for violence and hostility.

Here's what was listed: on the street; in and and around home based settings ... ; in institutional settings, in schools, colleges and at work, and on public transit.


There's another expression for this: Pretty much everywhere.

It's disturbing to see, written in black and white, that situational vulnerability, means that there is virtually no situation under which people with disabilities can expect to feel safe from targeted violence and hostility.


This is one of many reports I've read recently that result from major research project that paint a bleak view of the community and what it means. A British study showed that a large number of people with intellectual disabilities make adjustments to their movements in the community or adaptions to their schedule of activity out of fear of being targeted and hurt while being out, just being out. An Australian study showed that 56 percent of people with disabilities experienced barriers to social inclusion and community participation. An American Study that a significant number of people with disabilities report experiencing abuse and victimization 'too many times to count.'

These are large important studies. They raise significant issues that demand by the sheer size of the problem to be noticed, to be used in discussions of where we actually are in our movement towards full citizenship.


Silence. I don't hear this being discussed in conferences or at tables where planners plan things that need to be planned. I don't hear concern expressed about what this means to actual individuals who deal with these issues daily.

I think there is a fear that if we talk about the community, and what it's really like, that people will decide to take community away from us. Protect us from this thing called 'freedom'. That's the knee jerk response. But what about, what about, maybe helping to transform people with disabilities, through skill development and through confidence building and through self protection strategies and what about transforming police and other protection services through the voices of those who have discovered their own power and their ownership of the right to be and live free. What about beginning by coming together and speaking honestly about the problem - without fear of consequences for that honesty.

What about ...?

What about ... ?

Monday, January 30, 2017

Just Say It!

"Say it," I said. I knew I was being forceful, but she just wouldn't say it. I wanted her to say it and the tone in my voice made that clear.

I'm doing this more often, and I may have written about this before, but I'm liking this new strategy, new kind of reasonable stridency regarding my freedom of movement, my access and welcome and my realistic expectations of businesses and community offerings.

I had called to ask if a restaurant was accessible.

I was told that it was.

"Do you have an accessible toilet?"

"Well, no."

"Then you aren't accessible."

"No, no, we are, we have a flat entrance and you can easily get to our tables."

"But I can't go to the toilet when I'm there."


"And this is a restaurant?"


"And do many customers use your facilities on arrival or before leaving?"

"Yes, most,"

"But I  wouldn't be able to?"


"Then say it.

"Say what?"

"We are not accessible."

"But we are."

"No, you are not. What are we supposed to do after having something eat and drink and we need to go to the washroom."

"I told you we don't have an accessible toilet."

"Then you aren't accessible."


"No, you aren't."

"Just say that you aren't accessible and I'll hang up the phone and leave you alone."


"Just say it."


This happens a lot. They don't want to say they aren't accessible even when they aren't. Isn't it odd. They make it that we have to call them and talk to them about the toilet because they aren't honest in their answers about accessibility.

I want them to have to say it.

Or refuse to say it.

Either is good with me.

Sunday, January 29, 2017

His Name Was Christopher

"Yes, I know."

"Yes, I'm sorry."

"Of course, you are right, I can't understand."

A few months ago I was in conflict with a woman who was the mother of a child with an intellectual disability. She and I had been in discussion about the sharing, or in my opinion, the over-sharing, of the private details of children with disabilities lives by parents on social media. I thought it was a discussion we were having. It wasn't. She got angry really, really, really, quickly. She let me know that parents had every right in the world to share information about their children, that "parents know best" and that "parents needs support too" and finally that I would never understand because I'd never been a parent.

The situation we were in was semi-professional and I understood that I needed to, at that moment, stand down. I didn't change my opinion, because I can't do that on command, but I did apologize for having an opinion when, apparently I had no right to one. Because I'd never been a parent.

Those words flew out of her mouth with the intention of putting me in my place. They were spoken with a freedom and a privilege that she simply didn't understand. My job was staying calm while she called me out, called me down and spat out her observation about something incredibly personal. In the back of my mind I screamed the words: HOW FUCKING DARE YOU!!!

I am a 64 year old gay man who has been in a relationship with another man for 46 years. Do you know what that means? Do you? It means we lived at a time when it wasn't okay to be a couple. When Joe and I met, our love was a crime. A fucking crime! Do you think we even spoke about children? Do you think we'd ever be allowed to adopt a child. We came from the time when we were all called pedophiles and accused of all being child molesters. We came from that time. HOW FUCKING DARE YOU!!!

Did you know that years ago, by chance, I was working, weekends, providing recreational service to children with physical disabilities when I met a little boy who had been abandoned on the street by his parents? A boy who needed medication every single day to live? Dumped. Too much bother. No meds. No food. No clothing. Dumped. He was 6. I took him on an outing to the CNE and when going on a ride with him he said, "They think you're my dad," pointing at the staff at the ride, "I wish you were my dad." He cried a little. I comforted him and cried when I got home.

We actually spoke to a social worker about adopting him. No one wanted him. He was 6. He had a disability. He needed pills every day. He would probably die very young. We got through the paperwork. The social worker said that there had never been a gay adoption in the province but she would try. He needed a home. We had one. The visits happened. We answered questions, insulting ones, fully.

Then, the parents showed up. They were apologetic. APOLOGETIC! They dumped him on the street. Alone. He was found by a police officer. He talked about pills, needing his pills. They took him to a hospital. Then, to where I met him. But hey, they apologized. They were given him back. Because a weak straight apology was better than a strong gay home.

He died, months later, because they didn't feel like giving him his pills.

He'd just turned seven.

So no.

I don't have kids.

No I will never have kids.

Yet you shoot your mouth off assuming that only you have a story. That only you have history. That only you have feelings. I am a professional. I support. That's what I do. So I fucking apologized.

But let me be clear ...

... in my mind ...

... and in my heart ...

... and in my soul ...

... I screamed: HOW FUCKING DARE YOU!!!

Saturday, January 28, 2017


It may seem a small and petty thing. Even knowing that it probably is small and petty, however, doesn't make the feeling go away. We were leaving the movie theatre and when we went to the elevator it was broken down. No panic, we know they have service elevators in the back as this has happened before. We approached a staff who radioed someone telling them of the situation, a voice crackled through saying, "You can take the wheelchair and the other guests down the staff elevator."

Did you notice what what said?

The wheelchair and the other guests.

The fellow, a nice guy himself, given permission started leading us over to the elevator while saying "I can take you all down." I stayed put. He looked back at me questioningly. I said, "I'm not sure what I am supposed to do?" He explained that the elevator would take us down. I said, "But what am I supposed to do? Wait here?"

He was lost.

"Well, you're taking the wheelchair and the other guests. What about me? Do I wait here?"

Realization dawns on his face.

"No, no, he meant that all of you could come down."

"But he said, 'the wheelchair and other guests.'"

He was pretty quick on his feet, "Well, that's what he said, I said we could all go down together." He's right, he did say that. We went down.

We went down.

Not "the wheelchair and other guests."

This doesn't happen often, but when it does it irks me. I feel invisiblized, which is a word that doesn't exist but it should, people with disabilities and those in other minorities will understand it's meaning instinctively.

"Petty and over concerned with language from people who don't mean anything by it." I know that's what will be said. But the fact that you don't place meaning on your words doesn't mean it's not there. Ever think of that?

Friday, January 27, 2017

Turkey In The Fridge

To those I have ever dined with, to those I will some day dine with: I don't care what you eat.

Joe and I are vegetarians. We don't discuss this fact with people unless they ask and we are always careful with out answers. But, for the purposes of writing this, I need to be more open. We are vegetarians for both ethical and health reasons. We are careful in our purchase of foods, we read labels, we ask questions. In restaurants we always ask if their vegetarian vegetable soup has a beef or chicken stock in the broth.

When we moved in to this apartment, we had a new fridge and stove. No meat has crossed our threshold since moving in. That is, until recently. Well, actually, today, about 5 minutes ago. Not only that we've not purchased meat or meat products for 26 years. That is, until today, about 30 minutes ago. We are both having a great deal of difficulty with what's just happened.

What happened?

Our neighbour has become increasingly disabled over the past few years. In the last year, the progress of her disability has sped up a bit and she now manages to get out to work, and home, and that's it. She does her bulk shopping for groceries on line, but we always call her when we are going out to pick up groceries to see if she needs anything. She was uncomfortable at first with asking for help. (Been there.) but now she'll call and ask if we could pick stuff up for her when we're out.

Mostly it's been bread, and eggs, and milk and that kind of stuff. Today she asked for us to pick up sliced turkey breast and minced lobster meat. OK. Well. What do we do? Both of us blanched at the request. It was left on our voicemail so she wouldn't have heard any hesitation in our response to the request. We've not purchased anything like that for well over two decades. Decades.

Then, we talked. Had to get by a little bit of upset before any real discussion could be had. Now, if  either of us were her staff, if we were paid to support her, it would not be an issue. Her home, her choice, our service, that's how it works. But we aren't her staff. We are her neighbours. We don't have to do anything we don't want to.

Do we?

As we talked we realized we'd said, "Yes," to helping her and shopping for her. We never set any boundaries on that, we just said it wasn't a problem and we didn't mind. And, yes, she has a disability and she needs the assistance. But that need shouldn't give us the power to impose limitations on her choices, should it? But her need shouldn't make us do something that we are uncomfortable in doing, should it?

You know already, because I've mentioned it. We picked up what she wanted. It's in our fridge until she gets home from work.

We didn't buy meat.

She did.

I know that with my mind but gosh, in my heart, I don't really feel that. The complex interplay between needs and power and choice and morality make it all seem very messy. That is until we decided that ... we said, "Yes," to helping her. And that's all we did. We helped. Our values are not compromised because they had nothing to do with the transaction. Why? Because we were not the prime movers, we were not the decision makers, we were simply two people using someone else's money to buy someone else's groceries, that's it.

What do we value more: the ability to help someone out or the ability to proscribe someone's choices?

That's an easier question to answer than we ever thought it would be.

Thursday, January 26, 2017

The Road Rorschach Test

I am a bigot.

This acknowledgement causes me pain. I'm making it public because I want to change.

Sometimes it's hard to be intentional in your interactions and even harder in your interpretations of your world. The instantaneous judgement you make of another, the judgments that happen, seemingly before thought, certainly without thought, those, where there is no time for intentionality.

We were driving home after work. We were approaching a very busy intersection. There is construction, the road narrows, cars are everywhere. Because of the construction and because of the slow traffic there has been an increase in pedestrians zig zagging through the cars from one side of the road to the other. We're used to this and Joe is very cautious before moving forward. They can dash out right in front of you. Often we say things that are quite vulgar when we get startled by the sudden appearance of a fellow human in front of the grill of our car. But that is usually that.

Yesterday, the same thing happened.

With a difference.

Or rather the pedestrian had a difference.

She had Down Syndrome.

She stepped in front of our car, waited and then dashed through two more lanes of heavy traffic, just like all the other pedestrians have done over the weeks that this construction has been going on. She made it safely to the other side.

My assessment?

My instant reaction?

Well, it wasn't to swear or make a nasty comment like we do with other pedestrians who scare us that way.


I immediately questioned if she should be there at all! Who did the travel training with her? Didn't she recognize the danger? Why wasn't she crossing appropriately at the lights? That's the safe way to cross this road. Has anyone monitored her skills and seen that she was no longer following safety rules.

Now, no one who crosses the road like that is following safety rules and not one other person that we've seen do this has made me question their right to be in the community on their own without supervision. But, her disability prompted me to put her in a special category where suddenly her freedom was up for grabs. Where her right to make the same decision that hundreds of other people do was eliminated. Where liberty, and choice and rights were no longer part of the equation.

What the hell?

In my defence I was sick about my reaction moments after I had it. I recognized that I was seeing her differently, thinking about her differently and evaluating her as a citizen differently.



How do I expect to challenge people's preconceptions of what disability means, if I haven't managed my own.

My own instantaneous thought showed me the depth of the bigotry and prejudice I hold.

I'm lost, I don't know how to fight this.


Wednesday, January 25, 2017

The Shore (Let's Talk)

Let's Talk ...

Today in Canada is Bell Let's Talk Day. It's a corporate fundraiser where Bell donates money for calls and text to support mental health initiatives. One of the goals is to fight the stigma that surrounds mental heath and the prejudice which is inspired by the assumptions that come with that stigma.

I understand the sensitivity about discussing mental health from a personal perspective, from an experiential point of view, because I've felt it myself. When I became physically disabled, I worried about loss of income and loss of status and loss of personal freedom. I was forced to deal with each of these things because you can't hide a two hundred pound piece of machinery attached to your ass and hauling you around. It's visible. And because of that I had to confront my own internalized disphobia and ableism while at the same time dealing with those twin barriers in my social and professional worlds.

When, however, I first faced the devastating effects of anxiety, the panic attack that led to my life shutting down, it was easier to hide. Silence, I became convinced, was the way to deal with the fact that I had lost control of my life. Fear pervaded everything. Finally, because I simply couldn't take it any more. I went to my doctor. I have never, ever, cried at a doctor's appointment. But I did that day because it hurt so much. The fear that gripped my heart hurt and but the pain of saying the words was even worse.

It was the best thing I ever did.

I didn't find judgement I found compassion. I found support. And most importantly I found help. I learned new strategies. I learned how to pinpoint the triggers of my anxiety. I learned stress inoculation, a cognitive strategy I use almost daily. And I was given the appropriate medication. I now take that medication only a few times a year, but having it, knowing it will help me, lessens my need to use it.

I got my life back.

Without question I know that this will be something I deal with for the rest of my life. But I also know that if I stay the course, I can live well and happily and successfully, if I actively work at maintaining my mental health.

I exercise for physical health.

In the same way, I work to maintain my mental health.

It makes sense.

Let's Talk ... let's all talk about life as it's really lived. Let's go behind all the happy pictures on Facebook, the public mask we all wear. Mental health affect us all in one way or another. Maybe breaking silence is the best way to reduce the stigma - if we're all in the same boat, let's all row towards shore.

Tuesday, January 24, 2017

Not Only Now

We were leaving the movie theatre with the girls and just outside the door was a fellow, sitting on the ground, bundled up against the cold. He had a sign that simply said, "Please help, I am hungry." In front of him he had placed a small receptacle for people to toss change in. I rolled over to him and Sadie, knowing I was about to get a Tims card out, said, "I want to give it to him!!" He watched this and you could see amusement touch at the corner of his eyes. It changed his face dramatically.

He spoke to Sadie, his voice was softer than I expected it to be, and asked her how her day was going. Sadie heard the question but didn't answer. She was waiting for the card. She was focused on getting the card and giving it to him. I said, "Sadie, you were asked a question," she turned to him immediately and said that her day was going good. Now, when we're on the telephone with Sadie, that's pretty much the end of a conversation about how school went, how skiing went, how the weekend was going. To Sadie, that answer is quite fulsome and descriptive. But, she read the interest in this stranger's face and continued on talking about the movie we'd just seen and how good it was.

Then, the card was out of my wallet and I handed it over to her to give to him. I started to remind her what information he needed about the card and she put her hand up to stop me. She knew the drill. She told him what it was and how much money was on the card and she added, "You can sit and be warm too."

We were about to leave when he said, "Thank you for the card, I will get a coffee or a hot chocolate later today. But thank you even more for spending a few minutes talking to me, that mattered even more." As we pulled away, I heard him say, to no one there, "I have a little girl your age too." When we turned to go north I looked back and his head was down and it looked as though he was crying.

Every one of us has a story, is on a journey, and seeing someone simply in the now is an injustice of larger proportions than I think I ever understood before.

Monday, January 23, 2017


There is a small convenience and news store that I like and when I'm nearby I always pop in to buy my lottery tickets. It's very small and yet there is room for me to move around in so I can be in front of where the trays of scratch and (usually) lose tickets are kept in big trays. If there are people in the store I don't attempt to get in front of the tickets, the store is simply too small and people move so erratically that I might accidentally cause hurt.

In those times where it's too busy for easy entry I pull up beside the cash register and the fellows who work there pull the big trays out from under their protective shield and hold them over for me to pick out tickets. Typically I ask them to just pick tickets and to not bother bringing out the tray. Usually they agree and grab a few of what I ask for. But yesterday I pulled up and asked for a few of the scratch tickets and asked him to just pick them for me. It was a new fellow and he said that no, he'd get the tray. He said that part of the fun was picking the tickets and he didn't want me to miss out on that.

He held out the tray and I went about picking out tickets. I joke with him saying, "How's your arm holding out?" He smiled and said that he was fine. After a pause, he said, "It is my privilege to serve customers and my duty to do that with kindness." I had finished picking the tickets and he put the tray back. I paid for the tickets and wished him a good afternoon. He did the same.

I looked up "duty" to find out exactly what it meant. Several meanings were given but two were:

- a moral obligation

- something you feel is the right thing to do

As always, in these kinds of moments, I thought about the work that I do with people with intellectual disabilities. Do I always remember that it is a privilege to serve them and that it is my duty to do so with kindness? Do I always remember privilege and duty when it comes to how I do what I do? I'm not sure that I do. I think sometimes it's a job, sometimes its a job that I love, sometimes it's a bit more than a job, it's a privilege that comes with a duty.

I left that store feeling respected and cared for by a stranger, someone I've never met before, and, that felt good. Really good.

Maybe if I remember how it feels to be served with kindness, I'll remember that that's how I can make someone else feel.


Sunday, January 22, 2017

The Trouble With Diversity

I've been asked, several times by different people, why I haven't written more about Trump. I've been chastised a couple of times form not bringing a disability perspective to the phenomenon of Trumps rise from 'can't win' to 'did win' in the states. My only response has been, thus far, is that there are already a lot of people bringing a disability perspective to the slow and steady rise of hateful rhetoric about those Trump perceives as having a threatening difference. You know, anyone but certain white able bodied males. And besides, I remind them, I am not 'the voice' of all things disability and I have a responsibility, in writing this blog, to write only what I am moved to write.

It should be no surprise to anyone that I am appalled and frightened by the very idea of a Trump presidency. I was one of the ones who was not surprised that he won. I have seen how hate stir into action while love likes to steep. Love got up an hour late and the election, it was done.

But I want to write about my person Trump problem. I have a lot of Facebook 'friends,' most of them I don't actually know. Most of us are connected by our own relationships, personal or professional, with disability. So that means I have a very diverse group of people I'm connected to and whose posts I read in my daily feed. For the most part this is great. I feel up to date and informed about what's going on in Australia and the United Kingdom and, of course, the United States. I hear of things on Facebook before in the media, and more importantly I hear of things that are never covered by the media. The media has no special interest or drive to cover disability issues so this link for me is tremendously helpful.

What this diversity on my feed also does well is bring forward a wide variety of points of view. Most I agree with, some I do not, and that's lead to great discussions and I find, more often that I would like, I find myself recognizing my own prejudices or flaws in my line of reasoning. Good. I grow. So I'm not uncomfortable with divergent opinions.




There are those who post very pro-Trump messages and memes and who are really, solidly, behind the man and his philosophy of the 'forgotten people' of America. He's not talking there about gay people or women or people of colour or people with disabilities - we're the one's whose attention has pulled away from 'regular Americans' (here read white heterosexual able bodied people). To suggest that I'm not a regular Canadian because I am gay or because I have a disability is a slight that would bring me to fight. To suggest that there is a 'regular citizen' is to suggest there are 'irregular citizens' and that's the divide that I find terrifying. Being set aside, culled from the group, upsets me. But ... here I am, off track. But I get off track in thinking and talking about this.

What I was trying to say is that they post things that are pro Trump and I believe, anti me. I don't know how the reconcile those two things. But I don't know what to do either. I don't want to just unfriend people, I don't want to not hear their voices, but I've also found that engaging them isn't particularly helpful. You can't talk to someone who is already ready to scream.

I see their posts, read as much as I can and move on. I don't like the posts so I don't 'like' them. But other than that I'm just going on. I value diversity, but, my good heavens, that can be a difficult way to live. I guess you can sum it up by saying: The trouble with diversity is that it's diverse.

Saturday, January 21, 2017

My Stupid, Stupid, Heart

Not sure if it's because of the number of times my mother washed my mouth out with it but I developed a taste for soap. Now you won't find me wandering the aisles of fancy toiletries shops sniffing at gently scented find milled bars of soap produced from the milk Yaks who only ate clover. You will however find me in Winners or Marshals along with others who are as unaware as I about the effect of clover diets on a bar of soap. I like a nice soap.

Two days ago, Joe placed a new bar, a nice one made from goats milk just in case you want to know, on the tray in the shower. He set it on the stub left from the other one. That one had been a black soap that produced the nicest lather. I remembered, when I saw the new bar, all nice and plump, sitting there tempting me, about the first time I'd washed with the other soap. How clean it made me feel. I started to feel a bit sorry for it. I mean there was more left, it would last another week or so, it still had much to give.

I reached for it and it dropped from my hand and slid to the drain. It was too far away for me to reach. Again, I felt almost pity for it. I did. Really. But I grabbed the new soap and began my shower routine. When I was done I noticed the old soap, all soggy from being submerged in the flow from the shower, I called to Joe to rescue it and put it back on the tray. It didn't deserve to be treated that way.

A few days later we were out and about and we came upon a old fellow, sitting on cardboard, leaned against the wall of a building, with his cap out, asking for money. He had an old sign beside him, but it was so covered in grime that it was illegible. I carry with me $5.00 gift cards for Tims, a coffee shop that's easy to find pretty much where ever you are. I stopped and gave him one of those cards, he smiled and said that he'd use it to go get a coffee and to get warm when he couldn't take the cold any longer.

He opened a little bag, resting by his side, attached to him by a long strap over the opposite shoulder. He wanted to place the card carefully among the stuff he had in there. We were still chatting and I notice a small stub of soap placed lovingly in his bag.

A stub of soap.

My stupid, stupid, heart.

I realized that I had got all attached and imbued an inanimate object with feelings and humanity, a piece of soap for heaven's sake, and yet, even in this interaction, even with giving him the card, even with our brief chat, I didn't feel those things for him. Not really. Not deeply. I sat there stunned.

Accused by a piece of soap.

My stupid, stupid heart.

I discovered that humanity is something that, in my mind, I have the power to grant to people, to things, to the lonely tree behind my apartment building. And because I have the power to grant it, I also have the power to withhold it. Not anyone's actual humanity, but my willingness to accede to it in how I see them.

I don't want that to be under my power, my wish.

I want the ability to see the humanity of every person I meet hard wired into my brain. I don't want to be able to separate some from the herd.

But I am able.

And I do.

Because of my stupid, stupid heart.

Friday, January 20, 2017

Well, He Asked

I'm at that age where I've been around for a long time, not just on this earth, but in the work that I do, that people will come to me to ask questions. The problem, sometimes, for them is that I'm also at the age where I watch my mouth just a little bit less than I did a few years back. I just don't have the strength, or maybe it's desire, to hold back my immediate reaction.

It happened that I ran into someone who recognized me and in the midst of an 'Oh, hi' kind of interaction that the fellow thought that maybe I would have time for a quick question. I did have time and I like quick questions. I like to stay nimble on my mental feet so I told him to go ahead.

He told me that he was working with someone with an intellectual disability. She is being bullied because she has hesitant speech. It takes her a few moments, sometimes between words, for her to gather her thoughts and then get them out. It's not a real problem for her, but it can be irritating to others. One of the women that she meets at Bingo sometimes makes a big deal about not wanting to sit next to her because she talks like a 'r-word' and the fuss that this woman creates is really hurtful to his client. What should he or she do?

"Well, first," I said, "everyone needs to realize that her speech isn't irritating. Her speech is her speech." I wanted to begin there because I so often hear that someone is being bullied and then there is a 'sort of excuse' given to the bully because the person is described as 'a little annoying' or 'can be a bit pushy' or 'really is fat' or 'does dress kind of provocatively.' All that has to stop. It's blaming the victim and excusing or giving a rational to a behaviour that is simply unacceptable under any circumstances. Teasing and bullying are forms of violence. Period. No excuse. No reason. Violence.

Then the fellow jumped in to say, "I should have said that the bully is another person an intellectual disability."



And that should make a difference to my response?

"What difference does that make?" I asked.

"I just thought you should know?" he said.

"Why?" I asked.

"Well, my agency supports both women," he said.

"Do you think that causes a conflict of interest?" I asked.

"Yeah, well, maybe, I'm not sure," he said. I could tell he wished he hadn't asked the question.

"Have you been aware of this for some time?"

"Yes, it's been going on a long time?"

"And what have you done?"

"We've talked to both of them?"

"And what have you said?"

"We told the woman being teased that she should ignore the other woman and we told the other woman that she shouldn't tease others."

"Did it work?"


By then he was out of time and had to go, I gave him my email and asked him to write me so we could finish the discussion, he said he would, and he did, and he's given me permission to write about our first encounter.

I wanted to write about this, however, because I worry that we care about bullying and teasing differently when it's done by a staff, a community member or some other non disabled person than we do when it's done by a person's peer within an organization. Then, it's often just not taken as seriously as it should be or there's a 'well what can we do about it?' attitude. Other times I hear people talk about the bully with compassion - telling their story and how hard they've had it, as if that explains lack of action on the part of the supporting agency.

I don't like that people have had it tough but I don't think that gives them an excuse to harm or perpetrate acts of social or physical violence on another.

Disability is many things but ...

Disability isn't an excuse.

Thursday, January 19, 2017

My Problem

I have a problem.

I think I've had it for quite a while, but I don't think I've really acknowledged it to myself or to anyone else until now. Let me give you a three examples and then I think you'll understand.

We are having a 'see you soon' gathering at my next team meeting for someone going on leave for a few months. I am in the liquor store picking up a couple bottles of wine, not to consume at work of course, but as gifts. I'm pushing myself carefully not wanting to knock over display towers. A passerby makes a comment about using benefit dollars to buy booze and about how he, as a taxpayer, resents my use of my money in that way. I spring to my own defence and say that I am fully employed and that I am, like him, a taxpayer.

Sitting in a food court holding the table for Joe. He eats much more slowly than I do so he gets his food first and then I get mine. I still finish first but there's not as much of a gap. Anyways, I'm waiting. Another anonymous comment comes my way about being fat and lazy and in a wheelchair, about how I let everyone serve me and the burden I've become. Apparently if I rise up and walk, I'll become thin, productive and those around me won't secretly wish I'm dead. I immediately make it clear that I push myself where ever I go and I participate actively in all my relationships.

It always surprises me when I'm out with Joe, Ruby and Sadie that sometimes people see only me and not me in relationship to the people I'm with. We were all, together, in a line up, getting tickets to a movie, and a comment is made about how sad it must be to be alone all the time. I rear up and say, quietly because I don't want the kids to be involved in another scene, that I'm not alone and that I'm with the people I'm with and, for God's sake, shut up.

You see the problem don't you?

In my mind I'm going after ableist and disphobic assumptions about people with disabilities. In my mind I'm educating people about who people with disabilities are and the lives we lead.

But that's not what I'm doing is it?

Every defence that I use, buys into their measuring stick about what it is to be a person of value.

I work. Okay, big whoop-de-do for me. My response says that I agree with how they determine who should spend what on what and that I have the right to spend my money the way I want because I earn it. Well, I don't agree. I don't think it's anyone's business to tell anyone else how they should spend the money they have no matter how it comes their way. So while challenging stereotype I'm reinforcing hierarchy.

I can physically push my chair. Okay, hold a parade in my honour. My response says that there are lazy people with disabilities but that I'm not one of them. I don't belong to THAT CLASS of disabled people. I am physically strong enough and have the dexterity to be able to push myself, at my weight, in my chair. Well, I don't think that 'lazy' is why people are in wheelchairs. I think that's a stupid notion and my response should tackle that, not reinforce it.

I am married and have relationships. Okay, ain't I special? My response says that there's something about me that makes me able to have relationships and that by having relationships, I have more value. Well, shit on that. I know people with disabilities that for a variety of reasons are not in sexual relationships and have little in the way of social relationships. Leaving out a discussion of why that may be, the question is, does that make them less worthy of respect? No. It doesn't.

I don't know why I want the respect of people who are ignorant or mean towards me. I don't know why I feel a need to protect myself by saying 'I'm not one of those kind of disabled people, you know the kind that don't deserve respect and welcome.' My inner disphobic self maybe peeks out at moments like that.

But, and this is not a defence, I don't know how to respond any other way. I don't want a discussion with someone who said something with the purpose of hurting and degrading me. But I also don't want to justify, in my response, their measure of value and of worth and of humanity.

I have a problem.

Wednesday, January 18, 2017

The Bump and I

Tomorrow my power chair comes back. I am conflicted. Not by the 900 dollar repair bill, which was enough to knock the wind out of me, but by the fact that I'm wondering about how to incorporate it back into my life. This stands in stark contrast as to how I felt when they took it into the shop. Then I almost mourned its loss in my life. Everything suddenly seemed either harder or impossible.

But then, as disabled people do expertly, I adapted. But oddly, I didn't just adapt, I thrived. I pushed longer and longer distances and began to conquer steeper and longer ramps. I began liking the strength in my arms and the delicious sense of tiredness that came from really hard physical work. After a few weeks, I didn't much miss the chair.This was helped by the fact that the weather was really cold out and the WheelTrans buses were warm inside.

So yesterday Joe and I talked about the chair and it's return. I think I might have surprised him when I said that I wanted to use it, but use it less. I picked out some places where we've had to do a lot of organizing with rides and where there 'push potential' is small. Those places, where we go to a lot, I'll use the power chair. But places where the 'push potential' is significant, where we also go a lot, I'd like to stick with the buses and my manual chair.

I realized that I have relied on my power chair more than I needed to. It's easy, it's quick and it's fast, but it also takes away from me my ability to do things for myself and my potential for growth. Just the other day I forgot that I couldn't do something and therefore, I did it. It took me by surprise when I realized what had happened. The only reason that it happened was because, physically, my arms are stronger, my body is more flexible and I have more confidence in trying things previously out of reach.

900$ is a lot of money. I'm still shocked at the cost. But overall, I'm glad this happened. I'm glad that I was forced to adapt and change. What I thought was going to be a catastrophic event was only a bump in the road, a bump I now have the strength to get over.

Sunday, January 15, 2017


Because the word 'invalid' sounds different when it references an argument or a point someone is making than it does when referring to people with disabilities. That little bit of difference makes it sound like it's two different words with two different spellings, it isn't. I'm not going to go off on a rant about the use of the word 'invalid' in language, I practically never hear it used in reference to disability any more, even the dictionary says is archaic and it's offensive. 

What I want to talk about is those moments in life where I feel like I'm simply invalid - using the meaning of 'not valid'. A really small moment happened in a store where Joe and I were making a deposit on our retirement plan and picking up lottery tickets. I had rolled in, I was making the order, Joe was standing in front of me simply watching the ticket seller punch buttons. After buying the 'machine tickets' I also wanted to pick up some scratch tickets, the maybe a vacation this year tickets. But when I said, "I'll get some scratch tickets now," the man completely ignored me, I wasn't there. He totalled the tickets bought thus far and looked to Joe for the money. All this as if I was invalid - as in having no part to play in this transaction.

I spoke up saying, "I'm buying the tickets, not him, please listen to me." His wife, who works in the store with him heard the tone of my voice and rushed over. He was now flustered and was pulling trays of tickets out and shoving them at me. I hadn't yet told him which ticket types we wanted. I had to wait for the flurry of activity to die down, I then told him which tickets I wanted and he put back two trays and held out a third, to Joe, as if I wasn't there. As if I was invalid - as in an argument serving no purpose.

Again I directed him that I was picking the tickets and he shoved them at me, I was upset, so was he, but I picked and paid for the tickets. On the way out I told Joe that we would never purchase there again. Joe simply nodded, he got it.


It's a word that means 'of no consequence' ... 'wrong' ... 'incorrect' ... maybe it's a word that also describes the feeling that we have,sometimes as disabled people.

Maybe that's why, on occasion I have a deep, deep yearning for validation.

Maybe that's what we can all do for each other.

Saturday, January 14, 2017

= equals =

"It's nice," I said, "because I thought that being without the power chair would decrease my independence and in fact it's increased it." I was talking to someone about the fact that, with my power chair in the shop, I had expected to do less, to go to fewer places, to have my life significantly impacted. Well, I was wrong on many counts. It is very true that it takes way more work to simply 'be' where I want to be. Booking  WheelTrans to go a couple of blocks over to the nearest mall takes time but it also took effort to get over the guilt of going somewhere that close. I apologize, even now, to every driver. They are all very clear on the fact that the service exists to get me from place to place no matter where that is.

It's also a lot more work because I am pushing myself where I would have normally have simply motored along. But even there I'm using this as a challenge and my strength is increasing my ability to do ramps and to go long distances is also on the rise. I just finished, as an example, a 1.3 km lap around a mall in less than 40 minutes. For me, this is extraordinary. But, back to the conversation.

I gave as an example of my increased independence a moment when Joe said a version of, "OK, I'm going to go over here to do this, why don't you go over there to do that, and we'll meet at Tim's for a tea afterwards." Now this was a situation where before, in my manual chair, we would not have been able to split up and I would not have been able to push myself over to where I needed to go, do what I needed to do and get back to the coffee shop afterwards. It felt good that Joe was confident that he could make that particular suggestion.

Here's where the conversation took me by surprise. The person I was speaking to said, "So,it's becoming more of a relationship of equals then?" I spluttered about in giving an answer primarily because I had never thought, at any point in our relationship, even in the early days, that we weren't a relationship of equals. I'd not equated my status as a disabled person either lessened me nor elevated Joe in any way. We've always worked as a team and at no point has that changed.

It made me think about how people see disability. Every single person with a disability adapts to their life as a disabled person in a whole variety of ways. Every single person with a disability can contribute to any relationship that they are in in a whole other bunch of ways. Human relationships and the capacities for humans to give to one another simply aren't affected by, well, anything. While its true that people can and do value their relationships with disabled people differently but that's a choice, not a natural result of disability.

Over time Joe and I have relied on one another, sometimes more in one direction than another, sometimes the reverse is true. Like any relationship there are ebbs and flows in regards to who needs what and who gives what. If you want to look more specifically at the course of our relationship during the time period of my disability. There have been ebbs and flow there. At first Joe had to do everything pretty much to support me, but then I was learning how to be disabled and how to reestablish a relationship with my body and the abilities that were possible. Years later, I still need help, true. But do you honestly believe that Joe hasn't needed me, even once, over a 10 year period? Do you honestly believe that my very visible needs have invalidated our sense of equality? 

So, no.

I don't believe that 'now there is a greater sense of equality' and I don't accept that if I learn to do something else or require less help in a certain area of my life, I gain equality, I do gain, but not a sense of being 'more' in a relationship where there has never been a person with more and a person with less.

Cause human beings have the ability, through all of their lives, to connect and where there is connection there is equality.

Friday, January 13, 2017

My Mom or My Battles

People thought him funny. And because they thought him funny, they laughed at him. All he had tried to do was to be assertive and stand his ground. In fact, he had done that, but in doing so he made himself ridiculous in the eyes of pretty much everyone around.

What had happened was pretty simple. It's something we've all experienced but I'll bet that it happens with more frequency and with open intent to people with disabilities. He was standing in line, he was aware of the stares and the curiosity his very presence caused. Being disabled in public is always cause for bored eyes to light up and to burn a hole into out self worth. He had Williams Syndrome, for those of you who want to know, but any difference would do. A fellow, the suit and tie type, stepped in front of him when he was clearly next to be served.


He spoke up. (Good for him.) He protested. (Good for him.) He recognized that he had a right to his place in line and a right to be served when it was his turn. (Good for him.) He said, "Hey, it's my turn." (Good for him.) The fellow told him to be quiet and wait. (Asshat.) Then the man in line said, with fury, "I'm going to tell my mom on you and you'll be in big trouble." (Oh, no.) People burst out laughing. He was instantly humiliated. He left the line up, crying, his hand over his face.

"I'm going to tell my mom on you ..." Let's look at this statement. He's saying that since he wasn't listened to and since is simple protest wasn't enough, he was going to call in his mother who would fight his battle for him. "You'll be in big trouble ..." My mother is a powerful advocate and she will let you know precisely why what you did was wrong and how you discriminated against me.

I think what he said translates into, "My mother is my advocate, she speaks for me, she protects me."

Right up until he said he was going to report the man to his mother he did really well. He was appropriately assertive. He did what a lot of people, disabled or not, would not have done. He used his voice to protest how he was being treated. So he's got all the basics covered, he has a solid foundation for being his own advocate and using his own voice to deal with the world as the world deals with him.

He had so many options besides retreat, besides stating that the REAL ADVOCATE would deal with this situation. He didn't seem to have the skills to take the encounter one step beyond. He had three or four options available to him, all of which he has demonstrated that he could use. But he didn't.

His skills grew, but then, for some reason, they stopped growing.

"I speak for my child."

"I am my child's voice."

"My job is to advocate for the people in my care."

I worry more and more and more about the theft of the voices of people with intellectual disabilities by those who, while they have good motives, take what's not theirs.

And if you don't like what I've said, "I'll tell my mother on you."

I'm not saying that to mock the fellow with a disability but to demonstrate how that sounds coming from me. It's not a strategy, it's a set up for being teased, ridiculed and maybe even worse.

Thursday, January 12, 2017

"I" versus "He"

They arrived at the top of the ramp, started down, and then spotted me, racing down towards them, and pulled back to wait. The disabled access to the north mall means going under Bloor Street so there's a long ramp down and then a long ramp up. I enjoy this ramp because it's got hand rails on either side and it's set up so I can go really fast down one and then use the momentum to get up the bottom part of the other. After that I can just pull myself up to the top. So they watched me race down and then pull up. When I crested the top, where he had waited along with an assistant, he was grinning. He'd liked what he'd seen.

"Thanks for showing me how to do it!" he said. He was about to speak again but before he could, the worker with him said, "Do you wear gloves to help you, I didn't see?" I was about to answer when he spoke, his voice softly frustrated, "I was going to ask you what kind of gloves you are using ..." he'd obviously noticed my glove. Her voice entered again, "He's looking for a good set of gloves to use." His face closed down as she spoke.

I backed up, because I was just a little far ahead to be in a comfortable position for he and I to talk. He had spoken first, he had initiated the conversation, it was to him that I would speak. Besides I'm much more interested in 'I' than in 'he'. Once in position I showed him the gloves that I was using. "He's looking at getting biking gloves," she said leaning over him to look at the gloves. I said, to him, "I use these because they are good all weather, winter or summer, they have a good grip and they really protect my hands." He leaned over to look and she gently pushed him back so she could see better.

I didn't know what to do. It's his job to direct her support. I don't know the dynamic and I don't know what my speaking up would do. I don't know if it would endanger him. But I don't know what my silence would mean either. I simply don't know what to do. Except finish up the conversation.

He spoke from behind her head, she had bent down to get a look at them. "What brand are they?" I told him the brand and was relieved to have her stand back up so I could see him. Her voice again, "Where ..." He cut in, his voice a little stronger, "... did you get them?" I told him the store where I'd picked them up and told him I buy three or four at a time because I can't always find them.

"So am I going to see you racing down the ramp any time soon then?" I asked. He smiled and said, "I suppose it depends on ..." She began to speak again, cutting in. "Please," he said, "let me finish." It was not a request. She hushed. She didn't like it, but she hushed.

There's revolution and rebellion in him, once he makes friends with those, his life will begin to be his own again.

Wednesday, January 11, 2017

Fake Issues

Photo Description: a person, whose face cannot be seen, is wearing a white tee shirt with the words: WHY BE RACIST, SEXIST, HOMOPHOBIC OR TRANSPHOBIC WHEN YOU COULD JUST BE QUIET?

I am writing this post feeling cautious and I think that I'd like to begin to ask you to read it with caution as well. Please understand that I am not attacking and I do not wish to attack the teenager who made and wore the tee shirt in the picture. Further I think the kid who did this has his heart in the right place and, further, has the courage of his convictions and I think that's extraordinary. Even so I want to use the sentiment stated on the tee shirt to talk about a much larger issue.

Spending a little time reading the comments on this young man and the shirt he wore was really instructive. It again showed the incredible divide between those who decry 'political correctness' and those who felt that the young man had a real point to make. Some saw it as an attack on free speech and others saw it as advancing a more compassionate world. This is to be expected. In total I read over 300 comments about this shirt, its creator and the sentiment expressed. Not once did anyone say 'Hey, great shirt but maybe ableism or disphobia should have made the list. After all, the mocking of a disabled reporter and the recent beating on a man with an intellectual disability has been in the press a lot recently. But it didn't make a difference. When I posted a couple of comments regarding the oppression of people with disabilities, the replies to my comment included someone who said that the including "fake issues" would "water down the effect of the statement." Fake issues? Water down?

The constant erasure of the oppression faced by people with disabilities from public discourse is one of the most worrying aspects of  being involved in the fight for disability rights and the battle for full inclusion. The shirt is great, good for him, but the fact that no one sees an obvious omission is so disheartening. That people with disabilities face discrimination and violence and exclusion is well documented. That people with disabilities have a history of being erased which includes forced removal from public streets and public schools and public access by being thrown, against their will, into institutions where abuse reigned supreme, all done with the permission of those in society who had control and those in society who didn't wish us to live in our home neighbourhoods, is evidence enough of our status as outsider, and the degree to which we need to be on guard, our freedom is considered a gift not a right.

I recently looked at hate crime statistics regarding people with disabilities and found that, where that information is collected because we are included, it's going up. Pretty much everywhere. And there is no alarm, there is no warning bells going off, because people seem to refuse to admit or are wary of admitting that we face prejudice and violence and exclusion.

Watching the news here in Canada about Meryl Streep's speech at the Golden Globes caused me so much distress. On every news station where it was reported, with the exception of one, the clip of her speech began with 'violence begets violence...' and the context of where that statement came, the mocking of a disabled reporter, was clipped out. It wasn't seen as important that viewers saw the 'why' behind the statement. This was done in showing a speech where the press were called to a higher standard of reporting. Is that irony? I don't know I don't really understand what irony means. What I do know is that the wilful erasure of "disability" from minority status, from statements about oppression, from the mainstream media is concerning.

They took us out of society.

They welcomed us back reluctantly.

Now, they simply speak and act and live, like we don't exist.

The ultimate act of violence.

Tuesday, January 10, 2017

Something and Nothing

Sunday was a big day for me. As many of you know, my power wheelchair has been in the shop for several weeks now and as a result I've been pushing myself a lot more than I normally would during the holiday season. We've tried not to let the break down slow down what we would normally do. So between WheelTrans and my arms, we've managed to keep the exact same pace as we would have typically managed.

I've put a lot of distance on my arms and back, no question.

So the mall closest to us takes the bus about 3 minutes to get to. I always apologize and explain about my power chair break down and the drivers always say that their service exists for just that reason. I still feel guilty about it, but guilt shmilt I used the service anyway. So I learned on my first trip there that I could manage all the ramps that had hand rails on either side of the ramp. I had the strength to pull myself up with no difficulty at all. That was good.

The other ramps, without hand rails, even though it was hard work, I could manage it. It felt good and I felt strong. But, I knew, that I had been successful because I'd been selective. There is one ramp, on the main floor, just after coming into the building, that I avoided. It's steep. It's longish. It has only one handrail on the left side. I avoided it. I'd go down the elevator, cross over underneath and come up the other elevator. Whatever, it worked.

So Sunday, we arrived early and there were few people around. I rolled to the bottom of that ramp and looked up. I told Joe that I knew I'd not make it all the way up, that I'd like him to walk behind and not help until I asked, and we'd see how far I could make it and then I could really work on my strength so that I could make it all the way.

I started.

Immediately I knew that this was the hardest ramp I've ever tried to do alone. After two or three pushes I devised a manner of pulling with my left hand on the rail, and pushing with my hand on my right wheel. It was hard. I knew I was being really loud because people turned to stare. I grunted like a man with constipation after a cheese tasting party. It was work and I couldn't stop making the sound. I was sweating, but I kept at it. Suddenly I knew and I said to Joe, "I'm actually going to make it!!" Cresting the top I felt victorious. Really victorious.

Ha ha, this post isn't about me pushing myself up the ramp. Fooled you!

It's about Joe not helping me.

People stared at me grunting my way up that ramp, using every bit of my strength to manage it, but they also stared at Joe. Why the hell wasn't he helping me? There was anger and disgust on their faces as they watched him. They thought that he wasn't doing anything. But, they didn't know that their stares and their unspoken negative opinion of him was really hard on him. Joe, like everyone else, likes to be liked. I knew he was fighting his own battle, I knew he was struggling not to help me as I was struggling. I knew that this was not something he was comfortable with doing. But he did it. In doing nothing, he'd worked harder than I think he's worked in a long time of helping me. In doing nothing he did something of tremendous importance.

In the International Journal For Direct Support Professionals, in December, an article was published on 'holding space.' It's in many ways one of the most important articles I've read in a while. It talked about the importance of creating space for people to grow, for people to feel safe in, for people to simply be. That's exactly what Joe did, he made this a safe experiment for me, he was there to support if and when I asked for it. I didn't worry about rolling back or about losing control, that allowed me to focus entirely on pulling with one arm and pushing with the other. It allowed me to succeed.

I wonder if people with disabilities begin to lose skills and abilities or aren't taught skills and abilities simply because of the 'need to help' and the need to be seen as 'helpful'. I wonder how much people are limited by what people believe their roles are? The article talks about doing something by doing nothing.

I did something.

Joe did nothing.

And both were hard work.

Monday, January 09, 2017


Memo to Two Disabled Women:

All I was doing was being friendly. I had caught your eye as I entered and I nodded to you as I rolled by. The two of you were stopped and had pulled your power wheelchairs off to the side. You weren't talking, it looked like you were waiting. My nod was greeted harshly and then, you, the one in the light pink parka, said that "We don't acknowledge lifestyle disabilities." Turning your chair away from me was your way to put an exclamation mark on that statement.

I've not heard the term 'lifestyle disability' before, and I don't know exactly what you meant by it, but my guess is that you were making reference to my weight. And if you were you'd be mistaken, my weight is what most people connect to my disability and most people would be wrong. My disability is a result of a catastrophic illness which led to several surgeries. But, I really don't think that matters.

Let me say that again: I don't think that matters.

I agree that the disability community is a community as diverse as it can possibly be. I also agree that it's not so diverse as to include everyone. I abhor the 'We all have a disability in some way' sentiment as it's intended to be a mark of humility but it's simply a means to disavow privilege. I see our diversity as a strength of our community, I see it as a challenge for all of us to open our hearts really, really, wide. I see it as a potential source of incredible strength, and power and knowledge and insight. You're disavowal of me as a member of that community based on your own set of prejudices, saddens me. And, yes, if you meant to, and I know you did, it hurt.

This is not the first time this has happened to me. Several years ago, maybe two years into being disabled, I won a Canadian Blog award and then was attacked by one of the other nominees who thought I should get an award in the 'fat' category not the 'disabled' category and she stated, clearly, that she did not think that disability status should be given to those who choose to be disabled. She was angry.

Luckily, I haven't had this experience often. And perhaps that's why your words cut me so much. I didn't expect anything back from you, I didn't expect a nod or a greeting, I just acknowledged you and left it up to your will as to any kind of nod back. I don't just nod to people with disabilities, I should say, I nod to people who catch my eye, all of them, it's habit.

You lashed out at me with such anger. You wanted me to know that your community doesn't include me. Well, okay, forgive me for being really good with that. But, I'm sorry to tell you, you aren't the gatekeepers to this community, and like it or not, I'm in.


Sunday, January 08, 2017

Two Boys And Their Questions



Bang! Thud! Bang! Thud!

I was being hit by human cannonballs. It took me a second to realize what was happened, I'd been startled out of my reverie by the first bang against the back of my chair. The noise in the place echoed from wall to ceiling to the back of my brain. I was guarding a table in the overflowing cafeteria in the ROM. Joe, Marissa and the kids were foraging for food and I, blissfully, was not. Then, the bang.

At almost exactly the same moment that I noticed the two little boys bouncing off the back of my chair, using it as part of their game, their mother did too. Are all mothers capable of looking mortified and protective all at the same time. I, once I knew what was happening, thought it was funny. They were having a blast. She pulled them away from me, but I didn't want them to associate being pulled away with my disability and I had time so I said, "Do you want to ask me any questions about my wheelchair?"

They were promptly ushered over by their mom who said, "Go ahead and ask him anything you want." It was then she looked truly frightened. One boy asked me about my wheels. So I explained to him how I used them to get around and as I was doing so the other asked me about my gloves. He was a little confused at first when I told him that my gloves were like his shoes. They protected my hands as I wandered around in my chair. A couple of questions later and they were done, mother looked incredibly relieved. I'm not sure what she thought they'd asked but she'd clearly been asked some whoppers in her time.

I picked up my phone to check emails when I saw one of the boys, the older one, come back. He stood expectantly. I asked him if he had another question. He nodded really seriously. I told him to go ahead. I didn't hear him the first time because it was so loud and because he spoke really softly. Encouraged to speak up, he did, "Can I tear off this sticker," he asked, pointing to the brand sticker on the side of my chair that had been slowly peeling off on its own accord. I had been meaning to pull it off myself so this was a great way to get that accomplished, "Sure," I said. It took some doing but he got it off. He handed to me, again with great seriousness, and I told him he could have it if he wanted it. He shook his head and left smiling.

Then the younger boy was back. "Can I have the sticker please? I want it for my forehead." I laughed. I glanced up and mom who just shrugged her shoulders so handed him the sticker. It didn't stick as he'd hoped to his forehead but did quite well to the top of his head.

They got up to go just as Ruby appeared carrying a tray of food. "Why does that boy have your wheelchair sticker on top of his head?" she asked.

That's a question that I never thought I'd ever be called to answer.

Saturday, January 07, 2017

I Lied

I lied.

I liked to Joe.

And to Marissa, and to Ruby and to Sadie, I out and out lied.

But, of great concern to me, I lied to myself. It was an easy lie to tell. It was a lie the obscured a truth that I didn't want to acknowledge and I didn't want to confront. Those are the easiest lies to tell.

We were all talking about going to see 'The Illusionists' who were here in town, with their 'Direct from Broadway' show playing at one of the big theatre houses down in the district. The only time that everyone could make it was yesterday, Thursday. It was a work day for me so I said, "I'll organize the tickets but I won't be able to go because I have to work." It was an easy lie to believe because every word was true, or nearly true.

I got on the computer, found seats and purchased 4 of them. I was astonished at how simple the process was. I pushed a few buttons, filled in credit card information and wham, we had seats and seconds later the tickets themselves. I haven't bought seats on line for many years because accessible seats are apparently so difficult to arrange that you've got to talk to a person who talks to a person who talks to a person and an hour or two later you have seats. It was so efficient! Do non-disabled people even realize that their privilege seeps into everything, including buying tickets for a show?

There was also a sense of relief on Thursday morning when I started work knowing that they'd go down and get their seats and that would be that. I'd have been tied up in knots from anxiety because well more than half of my experiences in the big theatre houses in this city and in New York, as it happens, there has been a whole heap of bother when I got to the theatre about my seat. I've been moved to seats I didn't want because they didn't take out the seats for the chair, I've been made to sit across the theatre from those I've gone with, I've been humiliated by an usher yelling at me about going to the bathroom before the show. When it's good it grand when it's awful it's shit. Thursday morning no worries.

But then.

As I did the work that I was doing. It all started to unravel. I have vacation time left, none of the work I was doing was urgent even while it was important. I could have gone.

I could have.

But, I simply didn't want to go to the theatre while being disabled. I just didn't want to face it. I didn't want to spend hours on the phone finding tickets and then hours worrying about what's going to go wrong this time. I just didn't want to.

So, I lied to myself.

I made it easy for me to ignore the world I live in, the role that inaccessibility and sort of accommodations play in my life, the work and the worry that comes from being disabled as opposed to having a disability.

I can't do this.

I can't get into this habit.

I can't simply submit.

I can't let truth hide behind lies.

I can't.

And, I hope, I won't do it again although I suspect, I might.

Sunday, January 01, 2017

May You Have New Years Over and Over Again

No, I will not be making any resolutions today. Not a one. No, it's not because I don't believe in 'New Year's Resolutions,' not at all, it's because I do. But for me, today's New Year's is the result of a calendar flip. This may be cause for celebration but not, necessarily, in my experience, personal change. For me, personal change which results in a 'new year' comes from a moment, a situation, a devastation, a realization, that arises from every day experiences. In that moment I see myself, or my behaviour, in a new light, which, given the right resolution for change, can lead to a new day, a new year and a new way of life. Those are the only ones I've ever kept, or, more honestly, really tried to keep.

Like the moment when someone in my audience asked me a question that shook me to the core. It was after a lecture that went well, she was the last in line to speak to me, and then she did. And as a result of that question, I changed. I have worked really hard never, ever, ever, to use the B-word in reference to women ever again. Its been a rocky road, and I slipped many times, but success at changing is the result of a journey.

Like the moment I saw my face in the mirror when dealing with someone who had offended me, I had thought that I was being firm, and reasonable, and encouraging of discussion, but the mirror showed differently. I looked like an angry, bitter man. I had to be honest, I was angry, I was kidding myself and no one else. In that moment I resolved to be honest about what I feel, be aware of the power that I have, particularly when I'm feeling powerless, and remember the humanity on the other side of the conversation. I've been better at saying, "I'm really angry right now, but not at you, at the situation I find myself in ..." particularly when I'm speaking to someone who doesn't have the power to make change and certainly didn't have the power to cause the problem. I find myself more effective an advocate when I remember who I am and the power I have in interactions of high stress or heightened frustration.

Like the moment where I felt that I was being kind and realized that what I was doing wasn't kindness it was merely civility. That was a big one for me, and I see it a lot when people expect more thanks from me for holding the door than they do from Joe for doing the same thing. It's not 'just what you do' when it's for an equal and 'an act of charity' when it's done for someone not seen as equal. Yikes.

Like the moment, to personal to write about, that led, on January 31st last year that lead to me picking up some weights and begin to work towards an increase in personal strength. It doesn't mean that I don't have days that I just don't want to do it, but there are more days than not that I do it anyways. A new path, even with a slight grade, was made for me and my relationship with my wheelchair.

These moments and thousands like them have allowed me the opportunity to think and reflect and resolve to do different or do better. This means that I get to have new days and new years over and over again throughout any given year.

Tomorrow the calendar will flip to a new date, it's not cause for me to become a new me. For that to happen, life has to happen, realization has to happen, and then change, or the struggle to change, happens.

So happy new year and may you have many new years many new days and many new ways over the course of this year.