Turning Down An Unwanted Gift

Image description: 5 word bubbles sayin: no thanks, no, uh, nope, no.

We had finished our shopping and, as is our habit, I left Joe to go through the line and pay for the groceries while I headed over to a small shop to buy the week's lottery tickets. It costs exactly 14 dollars to buy one of each of the tickets for the draws which occur through the week. Added to this I picked up a couple of 'scratch and lose' tickets as well.

There was a new fellow working at the desk and his nervousness showed when it came to figuring out the cost. He counted it out in his head and then, after bagging the tickets, he pulled them out and did it again on the computer. He apologized, I told him I was in no hurry.

Once he was sure of the price and I'd paid him. I took the bag from the counter. A fellow, just a couple years younger than me, was standing off to my right. He had been politely waiting, and I nodded a thanks to him when he stepped back a bit to allow me to move the scooter.

Then out of nowhere ...

Because of course people feel free to make comment on people with disabilities who dare to be out in public ...

Because our lives are invitation for intrusion ...

Because difference is a magnet for inappropriateness ...

He said to me, indicating with a glance the bag I held in my hand, "Do you ever think about how easy it would be for someone to rob you. I could grab that bag and be gone into the subway, you'd never catch me."

I didn't know then and don't know now what the appropriate response to that should be. No witty rejoinder comes to mind.

 Of course I know I am more vulnerable than others. I know it personally because I feel it deeply. I know it statistically because I am aware of the research on crimes against people with disabilities. I know it. Everyone with a disability knows it.

But, of course, I don't feel vulnerable all the time. I wasn't feeling vulnerable until he spoke. I was feeling safe, in a store I knew, following a routine I've done a hundred times or more.

You may be wondering what I said to him. I said nothing. That's right nothing. I just stared at him. Like really stared. I wanted to really see him. This ordinary looking man, in ordinary looking clothing, doing an ordinary task, who felt he could be extraordinarily cruel to a stranger, who was he? My stare made him uncomfortable so to deal with it, he asked me again, this time laughing like he'd made a joke. My stare didn't waver, my lips didn't smile. He broke the moment by stepping forward and asking to buy some lottery tickets.

I backed out of the store.

On the way home I told Joe about what happened and then, I paid attention. By the time I got home I can say definitely that not once on the trip back did I feel especially vulnerable. That man's words stayed with him, they didn't come with me. He didn't manage to 'freak me out' as I would have said many years ago. He didn't manage to make me feel fear. I had managed to reject his gift of anxiety.

I may be vulnerable in many ways, but apparently no longer to the bullshit of strangers.

Moaning and Complaining

Image Description: Cartoon of a man saying "I complain therefore I am!"

My wheelchair is very ill.

They had thought that it was just the battery, so they came and 1000$ later, I had two new batteries. (An aside, what makes wheelchair batteries so freaking expensive. Given that they only last about a year and a half, that's a lot of money from a population which is not typified by being extremely wealthy.) So, Joe and I went out and for about a block things went well. I could feel that it had extra power, but when we went into a small mall, my ability to safely negotiate was hampered by really sluggish response to the joystick. We went right home. The more I drove it the worse it got, by the time I was home my heart was going crazy in my chest, I didn't know if I could get it into the apartment.

In a fit of self pity, I said to Joe, "You know, it's never easy for us. Never. It's never "just the battery". It's always just expensive. It's always about money.

So I called the repair people and described the symptoms again and was told that it's probably the motor and that's serious and possibly very, very expensive. Now, remember, it's 1000$ for batteries, so as a baseline for expensive, that means the cost is going to be significant.

They wanted me to bring the chair in, but I don't have a wheelchair van and I needed them to come and get it. They will come next Wednesday. If the repair is possible without needing parts, I could have it back a few days later, if it requires parts, it could be a very long time. Great.

Now I have the scooter, but the scooter is very old and has limited range and because of it's design it can't go on the subway. So my world has become very small. I know I'm lucky that I have a back up, I appreciate the back up, but it's just back up - it's not a replacement.

So, as the chair is almost seven years old, it's been suggested that I apply for a new chair, which means a reassessment and application. Today I begin that process with a phone call.

Fun.

Wow.

Shut down, Shut in

Image Description: A finger, on a switchbox, is turning the power off.

I didn't realize, when writing yesterday's post, that today was coming.

Today, we have to stay in to wait for the wheelchair repair people to come and take a look at my power chair. I am desperate to have it back even though I have my back up scooter. The scooter doesn't have the capacity to do the distances that my chair does, and it's too cumbersome to take on the subway, so I've been limited to just my neighbourhood. I'm grateful, don't get me wrong, but I'm looking forward to being back up to full power.

Yesterday I wrote about staying in, choosing to stay in, today staying in isn't a choice. What a world of difference. It's barely 8 and I'm chomping at the bit to go out. We had our first real snow last night and I'd like to go out in that and wander about a bit. But repair people come when they come and you don't want to miss them. So. We're in. And the walls close.

I remember many years ago, seeing an angry staff dealing with a kid in a wheelchair who was tantruming. There was no question that the kid was upset and angry and difficult. But what kid hasn't been in that spot? The staff, in an act of a revengeful kind of punishment (and don't even try to suggest that kind of thing doesn't happen) reached down and disconnected his power wheelchair such that it could not longer move.

The kids temper tantrum moved up a notch from temper tantrum to a riotous rage at the violation he felt. I spoke to the staff about it and she just said, "That will settle him down." I was new and, if you can believe it, shy about speaking up. I saw the wrong and I questioned it without protesting it and thought that that was enough. (I am different now.) But even though I saw the wrong then, I didn't understand it. Now I see this as purely about establishing, in a literal way, who had the power and who didn't. The act of taking away the power of movement was an act of heirarchy in the most blatent way it can be. I have the power to shut your power down. It's terrifying in it's implications.

Now that I use a wheelchair, I remember these things but through a different lens. I saw it as wrong, I didn't see it as what it was ... cruel. Taking away mobility from someone ... you'd never tie a kids legs up because he was having a tantrum, or you wouldn't do it without being reported to children's services. It's so clear now.

I know it's a huge jump from having to stay in for a wheelchair repair person's visit to a kid tantruming in a power wheelchair that has been purposely shut down. But I think, when we remember moments in our past we should look for connections that allow us to learn from memory rather than just visiting memory.

To that kid, whose name I don't even remember.

I'm sorry I wasn't stronger then.

You were right to rage.

I hope you still do.

Full Stop

Image Description: The words FULL STOP painted in orange on a metalic gray wall.

For the last two days, we've been cosseted in our apartment, with virtually no contact with the outside world. Once the door closed, on Christmas day, behind the last of our guests leaving, a silence fell in the apartment that was profound and deep. We went to bed, that night, full of plans for the morrow.

But we got up, and by 3 in the afternoon, we realized we weren't going to do any thing that was on our list of plans for the day. Well, there's tomorrow. But tomorrow came, and again, late in the afternoon I was still sitting in my housecoat, bundled up, in my chair in the front room. In two days we watched 11 of the LGBT films that Netflix has to offer. Our own little film festival. We watched them, talked about them, ranked them, and, in a couple of cases, learned from them.

It was a wonderful couple of days but, there is always a but isn't there, I kept having a variety of different feelings about the day. Those feelings were as a result of having to push away, or push back, the intense drive to go out, to BE out. I'm not sure but I think there was a kind of fear behind that drive.

The hospital visit that ended with me in a wheelchair started with me in intensive care. I was in a room, with no windows, in a special bed which had an kind of air mattress where air blew, through tiny holes, constantly around me. I used a bed pan, as I couldn't walk to the toilet only a few feet from the bed. The tremendous relief I felt when then came in and turned off the air on the bed and let the mattress settle down so I could get out and, with assistance, walk to the bathroom, was indescribable. The excitement I felt when the wheelchair came into the room for the first time, signalling the opportunity after several days doing little but sleeping, that I was to leave the room I thought I was going to die in, brought me to tears. During those days, I developed this need, buried deep down in my soul, to get out, to go do, to be somewhere, that has never left me.

So for the past two days I've been grappling with that demon. I had nowhere I needed to go and nowhere I needed to be, I simply wanted to be 'in' ... and 'being in' and 'being shut in' are different things. I had the luxury of choice. But I've not chosen like this before. And it was hard.

I realized that disability makes things different - because things have meaning attached to them like they didn't before. BD, before disability, I'd stay in without a thought about it. I would have seen it as simply a decision I made that had no other possible meaning. BD I had never experienced the fear that one day, staying in, might not be a decision.

It's been a great couple of days. I feel right and truly rested. But today, I want to go out, we're out of bread, we need a few things, and it'll be nice to feel fresh air on my skin. But it's my choice. I've not given in to that fear. I see it, I recognize it, and I even respect it, but I won't live my life with it at the till.

Nope.

It's still my hand that determines the course - even when that course involves a full stop.

Rudolph, The Greek Prime Minister, and Me

photo credit - the straits times
photo description - Alexis Tsipras, the prime minister of Greece,  standing in front of microphones

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Photo Description: Rudolph The Red Nosed Reindeer, head and shoulder shot, looking at his own glowing nose.

When I was a child, in the early grades of school, I loved the song "Rudolph The Red Nosed Reindeer." I knew all the words to it. I mean, I knew them. Other kids may have sung them or memorized them, but I knew them. I knew that the song was about a bullied reindeer, treated hideously, because exclusion is it's own class of cruelty, by all the other reindeer. I identified with him. I silently cheered when it got to the part of the song where Rudolph, who had been cast aside by others because of difference, was needed precisely because of that difference. I knew it was a fairy tale, of course, life doesn't work like that - even fat kids in grade two know that - and that difference was and always will be what it is ... difference. And difference is rarely welcomed.

As I got older, I found the song annoying. Not because it was played so frequently to be tiresome or because it's lyrics can get stuck in your head for days, but because of how the song ends with a celebration of the other reindeer. The reindeer who rejected him, who laughed and called him names, who never let poor Rudolf play in any reindeer games, they become the centre of the song. They get to 'love' him, they get to call out about Rudolph's legacy and achievement.

Where's Rudolph?

How does he feel about those that tormented him now celebrating him? We are supposed to imagine that Rudolph is gladly receiving these tributes from former tormentors. We are supposed to picture Rudolph basking in the fact that he'd become useful to them, therefore worthy of their notice. We are supposed to feel the warmth of their, very belated, welcome.

I knew, just knew, that I would not have been so forgiving. I knew that I would have been angered at the simple fact that, if it had been me, I would have been expected to have just suddenly forgotten that my new 'besties' were my former 'bullies.' I couldn't have done it.

Because something was missing.

I feel this strongly. To this very day. When I hear people who once were full of anti-gay vitriol now rushing to embrace gay marriage and, like they had never thrown a fist, or thrown an epithet, or thrown aspersions on an entire community of people. And, of course, at me. I find it hard to join them in their 'reindeer games' as it were.

Because something was missing.

I remember, clearly, a young girl with Down Syndrome, who had been tricked, her whole family had been tricked, into believing that she was popular and well accepted by a group of girls at her school. I remember the devastation that followed the realization that she'd been set up and used in a cruel joke. I can still see her face, while listening to her mother, crying, telling me what happened. I can see her reach out to comfort her mother. Apologize to her mother for what had happened. She hated herself in that moment. At the intervention of the school and of dedicated staff, she went back to that school and when the group called up to ask her out, like nothing had happened, she rebuffed all pressure, and there was pressure, by the adults for her to act like nothing happened and rejoin the group. She didn't. It shocked the other professionals that I stood with her. And I did so for a reason.

Something was missing. Something was really missing.

A couple days ago I read an article about the Greek Prime Minister, Alexis Tsipras, speaking about a civil unions law that will recognize LGBT relationships for the first time. The Prime Minister must be quite a guy, because he understood something of vital importance. He understood, not only what the new law meant, he also understood what the lack of such a law had meant.

He said that the day was, "not befitting celebrations but apology."

"Apology."

He said it. "Apology." He further said, “With the legalization of civil partnership for same-sex couples, a cycle of backwardness and shame for the Greek state is closing."

He recognized that people had been hurt, that there was shame attached to that hurt, and that shame had to be dealt with through the only possible action - apology.

Forgive me, but I think Rudolph was owed an apology. I think he deserved one. I don't think that celebrations and inclusion can happen, for all the Rudolphs of the world until apology is fully and completely given.

I think that young girl with Down Syndrome recognized what no one else did. That new found welcome is suspicious without sincere and meaningful apology. She was hurt. Set up. Devastated. You don't just move on from that. The bullies think you should shake it off and shake the hand, freshly unfurled from fist. She didn't. I think that she was wise.

And me.

Well.

Like Rudolph, like that young girl, I wait.

For apology.

When I read the article about Prime Minister Tsipras I got chills. Because he understood. And because of his apology, I believe this man. I would shake his hand.

Why all this on Christmas Day?

Because of Rudolph.

Because as we get together as families, as groups of friends, I'm guessing that there are those who need something more precious than any gift. Something they've been wanting for a long time.

A fresh start.

With you.

With me.

And that begins with a simple, "I'm sorry I hurt you, forgive me."

Doing Christmas

Photo Description:A night scape with a star beside the words 'TheGift of Presence' written in the sky.

The elevator door opened and the drama began. I was next and even though there were many waiting, no one rushed the door. I approached and saw that the elevator didn't have room for my scooter as there were still several people on board. I stopped and, backing up, said to a woman, who was next in line, that she could go ahead.

She was elderly and unsure on her feet. Her walker provided her a stability that she would not have otherwise. She slowly moved towards the door, Joe held it so it wouldn't close on her. As she slowly stepped into the elevator a man had had enough. He burst by her, knocking her on her shoulder, if her grip had not already been strong on her walker she would have gone flying.

Storming out by the crowd, waiting to use the elevator, he snarled, to no one and to everyone, "I simply don't have time for this!"

I think we were all supposed to commiserate with him. I think he thought that we, all of us waiting, would identify with him, the inconvenienced rather than her, the inconvenience. I think he was sure of that.

But that didn't happen.

Those on the elevator were very concered about the woman, in the walker, crying. Crying, not because she  had been nearly knocked over. Crying, not because she had been hurt, Crying, because she had been 'in the way,' a 'bother.' Kind words assured her that she had been no bother at all. The door closed on her upset and their kind words.

The woman next to me, looked at me, and said, "You know the really ironic thing about all this?" I shook my head, "He was carrying a Christmas gift. A Christmas gift! What does he think Christmas means?"

I managed to get on the next elevator, but not without help. I thanked people for their patience, they all nodded and smiled. It seemed that they were intent on doing Christmas rather than just buying it.

In Heaven, Smiling

Photo Description: A Christmas ornament of a fat angel hanging on a Christmas tree.

I got up yesterday fearing the worst. But, I'm the kind of person, and I don't think this is uncommon, who, when I buy a lottery ticket, knows that I'm going to lose but can't help but imagine winning - so I had hope. My power chair has broken down and the repair people can't come until the 29th. I've chosen to use my holiday days now and didn't want to be housebound through the whole season. But ...

... we have a scooter. The scooter came to me in an odd way. I had been waiting for the elevator in our building and a woman I'd never met, or even seen before, approached me and asked me if I wanted a scooter. I looked at her, as I sat in my fairly new power chair, startled. She pulled me aside and told me that she was on a bit of a mission.

Her friend, a lovely woman I'm told, had just passed away. One of the things she was in charge of was clearing out her apartment. Most of the stuff in the apartment she could whatever she wanted with. However there had been a specific request. Her friend was a fat woman and the scooter had been a life changer for her. It opened the world up and allowed her to really enjoy her last years. She didn't want it trashed. She asked her friend to give it to another fat person who might need it.

She wanted to follow her friend's request but didn't know how to go about finding a fat person to give the scooter to ... and then she walked in and saw me. Did I want the scooter? I hesitated only for a couple of seconds and then said, "Yes."

Joe and I headed down to get it. Joe rode it home. Years and years later, it's been here with us. I used it only once, sparingly for a day or two, when my scooter first went in for repairs, a couple of years after getting it. Joe has used it several times for several parades like gay pride and St. Patricks. The girls like riding on it with him.

But now I wanted to use it for several days, I wanted to go some distance in it, and I haven't used it except, as I said, sparingly for a couple of days. I was concerned about the battery which has to be 10 years old. I was concerned about it's ability to carry me up and down Yonge Street, which I needed to do. Last time I just stayed in the neighbourhood, fearing to travel too far in it.

Yesterday morning I got in. And off we went. The first trip was over to get a hair cut. The chair did this easily. I was reassured. The next was down to see my doctor, Joe and I both have coughs that won't go away. This would be the test. I'd never gone that far in the chair. The trip down didn't worry me but the trip back did. It's uphill all the way.

The upshot is ... I'm ready for my vacation! The scooter, as old as it is, is still ready and willing to take me where I need to go.

All because a fat woman wanted to help another fat person.

I don't know her, I never met her, don't even know what she looked like, but, I hope she is in heaven, smiling.

Being Ready

There was a small cluster of people standing around the family washroom, all waiting quietly in line. There were Joe and I, along with Ruby and Sadie, there was also a staff of some kind with two very shy girls. We'd all just seen 'The Good Dinosaur' - a somewhat disturbing animated film. The girl, with her staff, a child care worker of some sort I imagine, looked a bit shocked when I asked her if she liked the movie. As she spoke, it became clear that her facility in English wasn't great but that she really wanted to answer my question.

"I got scared," she said.

When she spoke, the child care worker, stopped, for a second, from whatever he was doing on his phone, and looked down at her and then up and me and smiled. Then he went back to his phone, checking out his Facebook page.

"I got scared too," I said, not being patronizing, some of what the movie about is scary, "Which part scared you?"

She very quietly and working to express herself in English, told me that she was scared when the dad dinosaur (spoiler alert) was swept away and killed. Her eyes filled with tears, "I didn't know what happened to him. I kept wanting him to be found, to come back."

"Me, too," I said.

Before I could say more the worker looked over at me and said, "Wow, she's talking to you, it's very hard to get her to talk."

I don't like speaking about someone when they are right there. But I simply nodded. His comment seemed to silence her and she looked away from me breaking off the conversation.

"I wonder why she's talking to you," he said.

"Maybe," I said, "because I'm not on my phone."

I don't know the stories of the two girls he was supporting. I don't know where they came from or what they experienced. But I know that at least one of them has a lot to say. If we want to hear, we have to appear ready to listen, we have to take opportunities to open doors, we have to disconnect from electronics so that we can connect with those who we support.

We communicate what we value all the time.

That's so important, let me say it again.

We communicate what we value all the time.

And we communicate it to everyone.

Finding Rudolph

Photo Description: Rudolph the Red Nosed Reindeer

This morning I was thinking about Santa.

I was trying to remember how old I was when I learned that there wasn't a Santa in the suit and reindeer sense. I think I was 9 years old. Most kids in my class had told me that there was no Santa, teased me for still believing, and acted all sophisticated in their certain knowledge that Santa was a made up story for kids. But me, I had no trouble believing when others didn't. I had no troubled with their sense of certainty. I think that year, Santa, or the Spirit of Santa, was morphing in my mind to the idea of Santa.

This is an odd thing, I suppose, to be thinking about on your birthday. But, when you are born at a time of trees and tinsel and carols and cookies, it's hard not to be overtaken by that other kid's birth. So I sat on the end of the bed, all freshly showered, getting ready to shave, and thought about Santa. I thought about how at certain ages we are supposed to stop believing in certain things - the fairy tales of life.

I thought about how many people suggest that by thirty you no longer believe in kindness, by forty you no longer believe in love, by fifty you no longer believe that anything matters, by sixty you no longer believe that you had a purpose at all. Call me naive, many have, but, like with the idea of Santa, I still believe. I believe it all matters, somehow, that we all matter somehow and that God or not, Heaven or not, here is still here and my responsibilities here are still responsibilities.

My power chair broke down this weekend. Suddenly my life became so much smaller. My world shrunk and ended at the apartment door. Joe and I have chatted about options and strategies over the next few days. I have things to do, things that only my hands can do. I need to do them, I want to do them, because there are people depending on me, needing me, expecting me to fulfil my role in their world as they fulfil their role in mine. Santa has a role in my life, but then so does kindness and love and believing things matter. And because of all that my broken down chair needs to take it's place, in proper proportion, in my life. It's an inconvenience, I don't like any of the strategies or solutions we've come up with, but I'll use them.

Because the chair can't tell me to give up or get down.

It's just a chair.

Santa wouldn't give up on Christmas because, say, it's foggy. He'd find Rudolph.

And, feeble as it may be, that's my plan too.

An Entirely Decent Man

Photo Description: Two pictures of Chris Herbert, one on him on the floor wearing a pink tutu and white shorts with a plastic shark set to look like it bit off his leg, one with him standing with his dog.

Chris Herbert is an entirely decent man. You may not recognize his name right off, but you have probably heard his story or read his post which has gone viral. You may have seen the hysterical picture of the plastic shark 'attacking' and 'eating' his missing leg. He's a dude with a sense of humour and at peace enough with his disability to make fun of it is an overt and public way. He looks to be the kind of cool guy that it would be great to have a pint with. Now, let's get to the decent part. He wrote a post on his Facebook page which has been widely shared. I am sharing the post here, for you, which hopefully he won't mind, because I'd like to look at what he said from a slightly different perspective.

Chris Herbert, Facebook post, Dec. 8, 2015:

Getting frustrated by some people expecting racism from me, because I got blown up. 

Here it is:

Yes. A Muslim man blew me up, and I lost my leg.

A Muslim man also lost his arm that day wearing a British Uniform.
 
A Muslim medic was in the helicopter that took me from the field
 
A Muslim surgeon performed the surgery that saved my life
 
A Muslim Nurse was part of the team that helped me when I returned to the UK
 
A Muslim Healthcare Assistant was part of the team that sorted out my day to day needs in rehabilitation when I was learning to walk
 
A Muslim taxi driver gave me a free ride the first time I went for a beer with my Dad after I came home.
 
A Muslim doctor offered my Dad comfort and advice in a pub, when he didnt know how to deal with my medicines and side effects.

Contrary to that,
 
A white brit spat in my girlfriends face for 'fucking a cripple when you could have me [him]'
 
A White brit pushed my wheelchair away from a lift so he could use it first.
 
A White brit screamed at my Dad for parking in a disabled bay when I was in the services coming home
 
(Although, alot of people helped in my recovery! I dont hate white brits either! hahaha)

Point is, fuck off. I know who I dislike, and I know who I dont. I know who I appreciate, and I know who I dont. If you want to hate an entire race of men and women for the actions of a few dickheads feel free, but don't push your views on me, thinking I am an easy target because one douchebag decided it was my day to die.

Blaming all Muslims for the actions of groups like Daeshe and the Taliban, is like blaming all Christians for the actions of the KKK or Westboro Baptist Church.
 
Get a grip of your lives, hug your family and get back to work.

See, I told you, thoroughly cool and decent guy. The reaction to this post, that I have seen is, rightfully, universally positive. He makes a great case, maybe the best I've read, for seeing people as people and for not succumbing to stereotypes.

But I'd like to focus on the second part of his post, where he describes how some people have responded to his disability. Even the violence of the reaction of the man who spat at his girlfriend and swore at him. To those of us in the disability community, none of that is a surprise. We all have stories about how the non-disabled have reacted to who we are, what we have, and the lives we live.

There is something distressing about how this post is being read. I have looked through a number of articles about this post and while some acknowledge the disability aspect of what he wrote, the do it in a way that makes it inconsequential, as if it's an interesting side note. I've not seen anyone who has stated clearly, that what happened to him as a disabled man is not OK. That people have no right to treat him in that manner.

Let's realize that this guy is a war hero. He went over in the defence of his country to fight for our freedoms and our rights. He comes home wounded from that experience and steps into a new life as someone with a disability and is greeted by violence and aggression and prejudice. This is NOT OK.

For those of us in the disability community who became disabled, rather than being born so, we all know the shock of the sudden change in status. The disability, well, we have to learn to live with that, develop strategies and new ways of doing old things. That's relatively easily sorted in comparison to the social and political aspects of having a disability. No one told me that I would face prejudice like I couldn't imagine.

This post represented a perfect time to get both messages that are contained within. First, what's with the rampant prejudice against people you don't know. Second, what's with the rampant prejudice against people with disabilities.

I would love it if someone simply acknowledged that there IS rampant prejudice. But people don't want to see it ... so they don't.

I think Chris Herbert is a brave man for writing what he wrote. He attempted, as a soldier would, to fight against the rising tide of prejudice against our neighbours, our doctors, our shopkeepers, our accountants who are Muslim. He attempted as well to bring into the discussion how people react to him, now, as 'other'. That he is experiencing the prejudice that he is fighting against - that which is born of ignorance and of hate.

To Chris: I don't know if you will ever read this, but if you do, know that a fat, old dude in a wheelchair in Canada, admires you. I admire your capacity to eschew hatred when it is thrust at you by those who would use you. I admire more how you chose to use your voice as a weapon against intolerance. And I thank you, as a disabled man, for bringing into sharp focus the kinds of prejudice that our community faces.

White Oaks, London

Photo Description: A large wall of windows with the White Oaks Mall logo in the top center panel.

I am in London, Ontario, right now, just getting up to get ready for a day full of meetings. Last night, on arrival, we headed straight over to The White Oaks mall to do a little bit of Christmas shopping. Neither of us are feeling well so we gave ourselves an hour to get some done and then pledged to go home. We kept to the time table.

As we were driving to the hotel, I mentioned to Joe how much I like shopping at that mall. I told him I wasn't sure why, it's a nice mall and all, but it is a mall. Joe said, "I think it might be because for some reason people don't stare at us there. They notice us, but that's it. They don't stare." I thought for a second and said, "I think you're right." "And," Joe went on being all perceptive, "if they aren't staring they aren't going to intrude in other ways, it feels a little safer than other places we go." Again, he was right.

We all know that places are accessible by both architecture and attitude. The place really was accessible, I had access to most stores, they had lots of merchandise but lots of room too. We, giving up on figuring out why this place was different, started coming up with 'it's in the water' ... 'it's full of university students so busy with their own lives that they haven't time to torment another'.

But then.

I remembered saying hello to a woman in a scooter who went by me in the mall. I commented to her about her Santa hat that she was wearing. She smiled and nodded at the compliment and was on her way. Then I knew. These places become accessible not by the work done by an architect but by people with disabilities going in and taking them. Being there. Being part of the community. Shopping and going about daily business. They, when the place opened, would have been the recipient of the stares and the intrusive questions. They did that work. They continue to do that work.

They made it possible for me to go somewhere and have a nice time without feeling freakish. These are the uncredited acts of community making that are very seldomly discussed and even less seldom honoured. One of the most dignified men I know is an old guy who uses a power wheelchair. He's been disabled all his life. I think he thinks me messy and unkempt and untidy but he saw me once take on a manager of a store over a needless barrier and he's always greeted me when he sees me. He told me once, when he was waiting outside the same store I was waiting outside. He talked about how different it was these days. Going out to malls and stores and movies and restaurants. When he was young, it was unheard of. Firstly, virtually nowhere was accessible. Secondly, even if it were, to go in was to be centered out and unwelcome.

But you went out, I asked.

Oh, yes I did, he answered.

Community building. The courage to take disability to where it hadn't been before. To roll over curb cuts and into people's lives. That's the stuff of legends.

So all this to say, we're nearly done our shopping.

What Kindness Isn't

Photo Description: the image of a broken window with the word Lies in red letters behind the break.

We pulled over and the driver opened the door and then stepped aside to wait for the woman who was making her way from the door, walking slowly, to the bus. When she got on I recognized her immediately but had no idea where I knew her from. She nodded at me, but did not speak. The driver got her to her seat and strapped in, she thanked him. The voice. I recognized the voice.

I have always been good with faces but bad with places. If a person is out of context, I have no idea who they are in relationship to me. I know I know them but from where. If you are wondering how I am with names - forget it because I forget them. But I knew I knew here.

Further.

I knew I liked her.

But where from. Although the rest of my life is messy, I have a fairly organized mind. I began to work. I knew that I didn't know her professionally, so slice off a huge group of people. I knew that I didn't really know her socially, never had dinner or anything. Slice of a much smaller group. I kept winnowing down. I knew I was on track when I thought through the category of people who I have regular contact with in stores, restaurants and the like.

Not a waitress.

Not a clerk.

Wait!

I was pretty sure I had it.

When I got off I turned to look at her and said, "Are you the woman who used to work over at the movie theatre?" She looked up, surprised, and said, "Yes."

I got excited, "I thought that was you, we really miss you over there!"

She frowned.

Paused.

"Are you just being kind? I find it insulting when people say nice things to be kind. It's an awful kind of lying."

"No, no, I'm not being kind, you must remember we always chatted when we saw you."

"Yes. I remember."

"Good to see you."

"You too, and thanks for recognizing me."

I thought it was an odd thing to be thanked for until I realized what I was being thanked for.

Another Fine Night Out

Photo Description: A spoon with soup in the bowl of the spoon and the letters AODA floating therein.

So you ever have this experience? You call up to buy tickets to a show you really want to see. You carefully and repeatedly ask questions about seating and about accessibility. You are told that where you are going is completely accessible, that they take pride in their commitment to accessibility. You are, foolishly, reassured by the earnestness of their promise.

Then.

You end up sitting in 'leper corner' where they've stuffed a chair, so someone can sit with you, but you are completely separated from those you came with and everyone else in the theatre.

Your complaints are met with a kind of polite indifference and a suggestion that you take your concerns write or contact someone else.

You go to the bathroom, push the accessible buttons, open two doors and come upon a bathroom with a huge post in the way. No way can your wheelchair enter and turn.

You then an guided with much fuss to another washroom in another place.

So, you bought a ticket to the show and then became the show. You bought a ticket for a night out and you come home with a business card in your hand, a letter to write, a complaint to make.

Yep, another fine night out in the land where the AODA (Accessibility for Ontarians with Disabilities Act) ensures our right to be treated with lies and pretense rather than outright hatred.

Welcome Home

Photo Description: PM Justin Trudeau welcoming Syrian refugees to Toronto last night. He is speaking with a little girl, in pink resting in her father's arms.

I woke up this morning and nothing had changed.

Nothing.

At all.

Canada, or the part of it I could see out the window, was unchanged. The larger Canada, the one that I hold in my heart that looks remarkably like the map from the grade 5 classroom with the provinces all different colours, was also unchanged.

The Canada, outside my window, looked just as welcoming, just as safe and just as free as it did when I went to bed last night.

The Canada, I hold in my heart, looked as if the map had been dusted and as if the colours were a little brighter, but has essentially not changed.

On the news this morning I saw that the Syrian refugees had landed in Toronto, only a few kilometres from my home, from where I sit and look out at Canada. I saw Prime Minister Trudeau and Premier Kathleen Wynne there welcoming the refugees. A camera catches our Prime Minister shaking someone's hand and saying, 'Welcome home.' To another, I see him leaning down and listening, his face goes grave, I don't know what was said to him, his voice, soft, "You are safe now."

I am aware of the increase of Islamophobia here at home in Canada because of the refugee crisis. I have overheard the conversations about 'taking care of our own first' ... conversations had over coffees that could fund a family of 5 for a week in countries desperate for help. People predicted that Canada would 'feel different,' would be 'made different,' would have our 'values disrespected.'

That last one always struck me funny. It's those who would lock the door that are disrespecting Canada's values, not those who would enter.

So, they've come. So more will come.

And Canada is just the same as it was last night, just the same as before the tires touched the tarmac, just the same as it's always been.

"Welcome home. You are safe now."

I woke up and nothing had changed. Canada was still Canada, and I am so incredibly proud of that.

A Community Christmas Tree

Photo Description: A Christmas tree made up of wheelchair users. Text: Merry Christmas, Thank you for supporting www.apparelyzed.com

I was sent  a link to this picture yesterday and I've come back to it several times. I, of course, checked out the link and found that it was for spinal cord injury, peer support. I also liked their tag line "enabling independence through social interaction." It's a site that clearly gets the need for disabled people to have a place and a space where it's safe to just simply 'be' without the burden that comes, so often, from care taking the feelings of the non-disabled.

Whoever designed this did a brilliant job of creating a clever image of community. The need we have, in the disability community to support one another, to support our community is still not widely acknowledged. I remember being at a conference when a speaker said that two people with disabilities had no more in common that two people with blue eyes. The speaker was trying to explain why people with disabilities shouldn't be allowed to go out in groups, or go out with each other, or be in any places where others with disabilities are. I got where he was coming from, I work with people who have been congregated and segregated simply because of their difference. But his, the blue eye guy, was a radical stance that people with disabilities really needed to be in relationships only with those without disabilities as that was and is the way to true social inclusion.

I shook that talk off quickly, particularly as Joe and I went to a gay bar afterwards. Really, is the concept of 'communities rather than community' that difficult?

So this tree, designed as it is to show something beautiful created entirely out of the lives and the support of people with disabilities - very cool.

Very cool, indeed.

Out X 2

Photo Description: X2 in a large font, the X green the 2 blue

"Sure, go ahead, write about it. I don't mind at all." He was shaking his head and laughing as he said it. I'd seen him around a fair bit, usually whipping by me in his chair, in various places downtown. He's young, a bit of a daredevil, and with sly good looks. We'd fallen into chatting because he chose to. He's someone that always acknowledged me when he saw me but never made any effort to stop or talk or connect in any way. So when he pulled up beside me and asked if I had a minute, I was surprised. I was lucky because, at that moment, I did have a minute.

I was further surprised to know that he read Rolling Around in My Head and knew who I was and what I did, and more importantly in this case, what I thought. He also told me that he's listened to a lecture I'd given that a friend had taped for him at one of my lectures - without permission I might add. It was after the lecture that he'd decided that he wanted to talk to me. He said that he liked my story and wanted to give me one more.

He said that when he came out to his parents as gay, he, wrongly, thought that it was the hardest thing he would ever do. He feared their rejection and instead met complete acceptance. "My parents have always been very supportive of me," he said, "or I thought they were." I asked him what he meant and he told me that they were very much of the 'the only disability is a bad attitude' kind of parents and they discouraged him from seeing himself as having a disability, discouraged him from going to activities for others with disabilities and actively encouraged him to speak of himself in a 'I don't consider myself disabled' manner. He loved this as a teen. He loved their insistence that he was not the thing he feared he was.

The upshot of all this is he's fallen in love, his boyfriend is, apparently, able to part the clouds on even the darkest morning. They have been dating for almost a year and he still hasn't introduced him to his parents. He's terrified to because his boyfriend also has a disability. "They accept that I'm dating a man, but they are going to have a lot of trouble with the fact that he is disabled. I know that they will automatically think that I can do 'better' as if the best can be bettered."

He told me that when he first read me here, talking about 'coming out as disabled' and then heard it again on the lecture, he joked that I bang on about it a fair bit, that he thought the idea was silly. But, now that he's faced with this situation, he's going to go home and tell his parents he's disabled and he's OK with it. That he has identified himself as a disabled man and has pride in that identity.

"After they get over the shock, and maybe some minor yelling," I'm going to bring my boyfriend home for dinner.

He said, "May I," asking me permission without me understanding why, then he reached over and gave me a hug. "Thanks," he said pulling away, "I just wanted to borrow some of your courage, I'm going to need it."

I told him that I thought he had courage enough, he grinned, nodded, and rolled away.

THWACK

Photo description: The word 'TWACK' in capitals in a comic book style font.

Thwack! His hand connected with the top of his son's head. "Do you know why I did that?" he asked.

I did.

It was because of me.

I was rolling into the lobby of a restaurant where we were joining friends for lunch, Joe was parking the car. I spotted the ramp up to the reception area and was headed over there when a boy, maybe about 7, saw me. He looked up to his dad, tugged his dad's sleeve, and said, "Dad, that man is really big."

Thwack!

He was struck.

When asked the question about why it was done, he said he didn't know. "Keep your opinions to yourself. You don't say things like that."

I wanted to intervene and say something but dad's face showed real anger. I didn't want to make the situation worse. Moreover, I have to keep telling myself that I'm not required to be an educational or inspirational moment for everyone, always. So I kept rolling.

What happened really disturbed be though. I didn't like the kid getting hit, even though it was only a bop on the head, even though it looked like it didn't physically hurt, I still don't like kids getting hit. Beyond that, I didn't like the fact that the issue was only the statement that the child made.

He wasn't judging me.

He wasn't mocking me.

He wasn't teasing me.

He had a simple, straightforward tone, a 'hey, look dad' tone. He was just describing me. Even his words, he described me as 'big' not 'fat.' Now I don't really have a problem with 'fat' as a descriptive word but I will admit to preferring 'big'. So he didn't use a word that's really emotionally charged for some people. He used a descriptive word.

And he was punished for it.

He's learned something.

I am unmentionable.

I am to be linguistically euthanized.

I am to exist in reality but not in language.

This scares me.

I am sure that the father was simply trying to protect my feelings. But. Really. I'm a 62 year old fat guy and I probably know that I'm big. So, as long as I'm being described not demeaned, I'm good with it.

I'm afraid that the next time the kid sees a fat person, he's going to duck, and look away, not wanting to see what can't be spoken.

A Party of One? International Day of Disabled Persons

(Photo Description: Disability Access Symbol in white on a blue background shaped like an arrow pointing up.)

Yesterday I was in a place where a lot of people with disabilities were. There were power chairs and scooters, there were manual chairs and walkers, there were white canes and crooked canes, there were people speaking in several languages - including sign language. I came through the accessible doors to find a lobby full of people who moved differently through the world.

I do not find that there is an automatic camaraderie when people with disabilities find themselves together in public spaces. There are some who immediately light up at the realization they aren't alone, there are others who seem embarrassed to be around others with similar disabilities. But even with that ... even with that ... there is a remarkable ability for us all to share space together without getting in each other's way. There is an amazing willingness to move an inch forward or backward to accommodate someone else's need to get through a passage way.

I did not realize I was in this place, with these people, on the eve of the International Day of Disabled Persons, as I was focused on the reason that I was there, the service I was needing, the expert who I was scheduled to meet. So, I made may way through those that walked and those that rolled, those with three legs and those with six, those who tapped their way by objects and those that were led by dogs, I signed "Hello," and "Excuse me," as I passed by a woman in quick conversation with her friend. I made my way by these people, in this place who's goal and mission is to provide service to those of us who exist a little differently in the world.

And.

There was nothing.

No banner hung proclaiming the day.

No slogans about rights, or access, or disability were up on the walls.

No mention of it was made by anyone.

At all.

I got up to Google this morning and Google has no graphic. About anything. It seems they couldn't find anything remarkable about today. Nothing to celebrate. Nothing of note.

But I am celebrating it here. On my blog and in my life. It's an important day on my emotional calender. I need these days. Days that remind me to stop and ponder. Days that remind me that I am part of something much bigger - a community of people, of voices, who have fought bloody but bloodless battles against attitudes and barriers. Those who lived and died locked away and those who flung open the doors.

I am here.

And I am not a party of one ... because

... we are here.

And that's reason enough to celebrate.

After Dark: A World AIDS Day Post

(Photo description: Thousands of candles making up the red ribbon that is used to memorialize people lost to AIDS)

Right now...

It's six o'clock.

In the evening.

The world has gone dark.

What I remember from the early years of the AIDS crises, is the silence. The long hours and days and weeks and months of silence from people in positions of power. Where was the response? Where was the concern? We expressed our outrage. We expressed our sorrow. Mourning filled the community.

And there was silence.

From anyone with the power to do something.

Really take action.

Demonstrate concerned leadership.

We got condemnation. We got blame. We got righteous hatred wrapped in brightly coloured rhetoric of love. We got used as tools to further an agenda of discrimination and dehumanization. The papers counted our deaths as if our deaths didn't count.

But mostly.

We got silence.

And we waited. 

As the world got dark.

I decided to write my blog this year, after dark had fallen. After many of you would have come to find silence here on my blog.

Because darkness and silence is what I remember.

I learned from watching my friends die.

I learned from watching my friends die in silence and darkness.

I learned that I had a voice and I had a responsibility to use it.

I learned that a voice could bring light to darkness.

I learned that with that kind of power - the power of voice and the power of light - each of the billions and billions of us on this planet has a responsibility.

And in the fight for justice and fair play and equality.

There is no excuse for darkness.

Or silence.

Ever again.

A Christmas Moment: Broken?

Photo Description: A black horse grazing. His front left leg is prosthetic.

The tree beckoned them. Their mittens and boots flew off as they ran in excitedly asking, "Can we decorate your tree!!??!!" Sometimes I think that the exclamation mark and the question mark were invented by parents of young children because I'm not sure that they would be able to speak without them. Our tree is up late this year because of travel and the lights had just been put on and we had not yet started to decorate so their offer was eagerly accepted.

They flew around the tree at speeds that were astonishing to watch. In seconds the tree looked happier. The ornaments were carefully taken out of their boxes and then quickly placed on the perfect branch. That such care and such speed could co-exist is a marvel. At one point Sadie pulled out an ornament of the winged horse Pegasus, and cried out, "His leg is broken off!"

She held it up to Joe to look at. Joe looked at the ornament and said, "Sadie, he's not broken, he's just disabled."

"Like Dave," she said, then thought further, "Dave's not broken."

The ornament went on the tree.

Glovittens

Photo Description: Hudson's Bay Olympic Collection Mittens. Black tops, with the Olympic logo and Canadian flag, red middle with CAN, in white on the top of the glove hand and a white maple leaf on the palm of the glove hand, then white tips at the top of the thumb and at the top of the fingers.

My hands get cold very easily.

A few winters ago I finally came up with a solution to that problem. I had bought various pairs of gloves, all promising warmth and none of them were capable of keeping me warm  while out and about using my power chair. Finally, in desperation, I tried something. I bought a nice pair of gloves that fit fairly snugly. Then I bought a pair of that year's annual Hudson's Bay Olympic mitts. When I first tried it, Joe looked at me quizzically with the 'what the hell ...' look on his face. I put the glove on, then shoved my gloved hands in the the mitts. Out we went. Victory! Warmth.

I'm telling you this now because, though my method keeps me warm it also creates another challenge which I face every year at this time. Driving my power chair with it's little joystick, that responds to the slightest pressure, with these gloves on requires tremendous focus and a couple of weeks of learning to drive all over again.

Not only that, learning to do this when there are more people out shopping, more things stuffed in the way, narrower passageways to get through. I do take my glovittens off when I go into a store, but as people are flowing in behind me I have to drive until I can find a place to stop and get them off. This means, like it did the other day, driving through the liquor store with new displays of fancy expensive bottles everywhere I looked, until I got to the back corner of the store where I took them off. I expected, at any moment, to here the crashing sound that a cut corner would leave behind. But I made it.

Today we're going out into that Black Friday weekend madness, we need groceries and to pick up a gift or two to send to people out west. My glovittens will be on, may the odds be ever in my favour as I make my way, with my joystick nestled between two layers of wool, completely unfelt my my hand.

Change is a Constant

Photo description: The word 'IDENTITY' in capital letters using a fingerprint font.

Last week in San Francisco I was honoured to give the opening keynote at the National Association for Dual Diagnosis annual conference. In talking with them as it was being arranged, I suggested that the topic be around the issue of identity for people with intellectual disabilities. I was thrilled when they agreed that this would be a good topic for a keynote.

In the keynote I talked about the importance of identity, positive identity as a disabled person, for people with intellectual disabilities. I related identity to good mental health and to good mental health practice. Separating people, even by language, from their identity gives people the message that there is something shameful in simply being authentically who they are. I was pleased that the keynote was well received, but that's not what I want to write about.

I received an email this morning from someone who had attended the conference and who said that they had been really challenged by the message that disability can be celebrated and be a source of both identity and pride. In her practice with people with disabilities she had never raised the topic of disability believing, somehow, that it was simply unmentionable. She had never questioned why it was unmentionable, it was, she said, assumed to be self-evident that disability was shrouded in silence.

She went home from the conference and in one of her first treatment sessions with someone struggling with depression and suicidal ideation she brought the issue of disability in at a point where it seemed natural to do so. She said that she used the words carefully and fearfully, afraid of the response. Instead, the person she was talking with took a big breath and said, "so, you know?" They then talked about how it had never been mentioned and the fellow thought that he wasn't allowed to bring it up. "I don't have to pretend anymore," he said, with relief.

The rapport that she thought she had had with him was a sham, it was based on his attempts to please her and accommodate what he thought she wanted from him. They were, she said, starting again, this time with honesty and acceptance. "I need to examine my attitudes and my prejudices," she said, "I think I have communicated a lack of real respect for the people I have worked with for so many years."

I am impressed that she was willing to question herself and examine her practice based on what she learned at a conference. I am always amazed when people are willing to embrace a new idea or a new way of doing practice. I try hard, when I'm at a lecture or listing to a presentation, to be open to new ideas - and I know it's hard to do when someone challenges ideas that I hold dear. So, my hat's off to the woman who wrote the email, she clearly understands that we learn as we live and therefore change is a constant.

She told me that I could write about this but she asked that I only quote from the email, not publish the email as written, which is what I've done.

Over Sharing? Maybe. Maybe not.

Photo Description: White writing on green background: I am who I am and that's all I can be.

I received some feedback about a lecture I gave recently. The person who filled out the evaluation really wanted me to know that they enjoyed the lecture, got a lot out of it but that there was something that bothered them. They thought I 'over shared' from my life. They listed three things that they knew about me from the lecture:

I am gay and my husband's name is Joe.

I am out and proud about my disability.

I am an anxious about my presentations and use anti-anxiety meds.

They thought this was TMI, as the expression goes and recommends that I consider removing the two that were not disability related from my presentations.

OK so that would be taking out the gay bit and the anxiety bit.

Hmmm.

I take feedback seriously and, so, thought about this a little bit. Each of those things in that list I have thoughtfully included in my presentation for a reason. Some of them caused me concern to mention, some of them were hard to mention. But I did and I do because of these reasons.

I know I lecture in places where being gay isn't wildly accepted with open arms and people fear rejection and unemployment if they were 'out'. By mentioning my sexuality and my relationship I hope to do two thing - get homophobes to rethink what they think about homosexuality and give the message to those from the LGBT community that they are not alone.

The idea of being 'out and proud' about disability is still a new one. Talking about disability, my own personal experience with disability, from a pride and by using identity first language, I hope to challenge what people think they know about disability. Just because you work in the field of disability does not mean that you have disability positive attitudes.

The hardest thing to mention was the fact that I live with anxiety, and a lot of anxiety about public speaking. I knew that people wouldn't believe it because I do it so much. I felt, and I understand this was wrong but I felt it anyway, a bit of shame at having to take an anti-anxiety medication. It's that shame that drove me to speak about it, there is too much silence about mental health issues and the kinds of ways that we can be affected by mental health concerns. Silence equals shame and shame can lead to suicide. So, I speak up.

Now let's be clear, I MENTION these things, in passing, in the lectures. If you haven't seen me lecture or heard a recording of me lecture then you might be led to thing that I harp on about these issues. I don't. They come into the presentation when it's natural for it to happen.

So, I wonder, and this is unfair to do publicly but I figure that anonymous means anonymous so I can respond publicly without fear of shaming an individual identifiable person, if the request to remove those two things is the reason I need to keep those two things in. I wonder if the request was because my sexuality and my acknowledging that I have mental health needs and supports caused some discomfort that needs to be explored. I'm just guessing, of course, but I do wonder.

Gay and Proud, Disabled and Proud, Anxious and Proudly Coping. That's me. And because that's me, that's part of how I present myself to the world.

So, after thoughtful consideration, I'm staying the course.

History: A View From The Wrong Side

Discussing the issue of 'assisted suicide' with almost anyone outside the disability community is a difficult thing to do. There seems to be a general dismissal of the concerns that are being legitimately raised by disability activists and organizations such as Not Dead Yet.

I am, they assure me, 'making myself upset when there is no cause.'

I am, they insist, 'purposely misunderstanding the issue.'

Those that I have spoken to seem to think that, we as disabled people, are a bit addled and prone to upset. Perhaps there's need for a massive PRN that we need to be given, from time to time, to settle down our nerves. I argue, strenuously, and to no effect, that disabled people do see the issue and perhaps see it more clearly than anyone else. When that doesn't work:

I am, they tell me, 'on the wrong side of history.'

For a moment this does silence me. Because they are right. Disabled people have always been on the wrong side of history. We have been left in forests to die, we have been vilified by those who think that we are manifestations of sin, our 'final solution' though seldom acknowledged came first and genocide honed it's skills on our lives in the basement of institutions. We have been sterilized, brutalized, congregated, segregated, persecuted and destroyed. History isn't our friend, you've got me there.

I am, again reassured, that 'this is all in the past.'

When I'm not comforted by this, and when I suggest that past attitudes are influencing present legislation, I'm considered to be, again, 'purposely resistant to the real intent of assisted suicide, which is to end the suffering of people who are terminally ill.'

But that's not true is it? Diane Coleman from Not Dead Yet points out "Under the Canadian Supreme Court ruling, disabled people explicitly qualify for assisted suicide whether or not they are 'terminal'". 

So, just how does the court see people with disabilities? What faith can we put in legislators and law makers and decision makers?

Recently there was a ruling in a case where a teenager was convicted of the murder of a young police officer. During the commission of the crime the teenager became disabled. While you can argue the judges ultimate decision to not imprison the teen, I'm not going to comment on that. It's what the judge said about the young man's life as a wheelchair user. Justice Alex Sosna said, "... already serving a life sentence, imprisoned in his wheelchair."


"imprisoned in his wheelchair."

That's what he said. this educated, sophisticated, interpreter of the law and justice maker. His view of disability is the view that has been held of disability from the get go, we are imprisoned and our only release will be ... death. Justice Sosna's ignorance of the life that people with disabilities live is, if the power he has didn't make this so frightening, laughable.

Let me state clearly.

I am not assured or reassured that prejudice will not be part of decision making about our lives and our deaths.

I am very aware that the voice of the disability community is being purposely ignored by those who want laws that make our deaths easy to procure.

I am deeply frightened that one day, some one like Justice Sosna, will have a say over me and my life.

History.

Repeats itself.

Like a demanding child.

Until it's heard.

STK()TOYCG

We came through the door last night at 6:30, right at dinner time, and collapsed into the front room. Well, collapsed after the luggage had been brought in, my wheelchair put into place, our housecoats found and put on, and drinks acquired. Our trip home had been flawless, not a single problem of any kind. Our trip overall was memorable.

At the conference I was honoured to receive the Frank J. Menolascino Award for Excellencefrom the National Association for the Dually Diagnosed. I had been informed that I was to receive the award a couple weeks before the conference and was surprised that I'd been nominated and selected.

For those who don't know his work Dr. Menolascino was a giant in the field of intellectual disabilities and his list of achievements is long. But for me, I remember Frank because there was a moment when he offered me a kindness, that only he could have offered, in a moment where I truly needed the gift. My mind knows that Frank made a huge contribution to the field of Dual Diagnosis but my heart knows him as a kind and generous man.

We make much of, and we should, the idea of 'random acts of kindness' ... I love the idea of just doing something nice for some random someone. But, it's a bit easier to do a no-strings kindness to someone who's a stranger, someone you won't see again. There is another kind of kindness:

Specific, targeted kindness, in a time of need for someone in your life, that only you can give. It's acronym is STK()TOYCG. These are more difficult, aren't they. Kindnesses, within relationships, can be seen very differently, motives can be questions, debts can be felt - in either direction. Kindness, within relationships, involves risk. I have seen kindness offered from one spouse to another, in a moment of need and vulnerability, be swatted away with anger and hurt. I have seen the desire to do kindness die.

There are moments when Joe is tremendously kind to me. Accepting this kindness, in a moment of vulnerability, is really, really, hard. But I know that rejecting it is dangerous, I may need it again. Later, when the emotion is gone, I know that Joe's kindness was just kindness, it wasn't a statement about me, my disability or my fragility. It was just a STK()TOHCG.

And that's what Frank did for me. I am probably still a speaker and presenter because of Frank. I needed something from him and though it was hard to accept at the time, and though I felt diminished, not because of how he did what he did but because of how I felt about needing something from him. Later I was to realize that I wasn't diminished, I'd been made stronger.

Next time you do a random act of kindness, think about maybe the STK()TOYCG's that come you way. In the end, the real end, it may be what you would like to be remembered for.

Leaving Welcome

Photo description: A wooden fence held together by nails at the top and bottom of the individual planks.

Today is the last day of the NADD conference, which I have enjoyed immensely. I typically don't go to the conferences that I speak at, because of time constraints. But with this one two of my team are presenting and I wanted to be here with them to support them and to celebrate the work that they are doing. So, I've been attending sessions, enjoying chatting with people at breaks and last night I attended the wine and cheese gathering.

I was able to talk to a lot of different people, hear a lot of wonderful ideas, laugh at some really good stories. It was wonderfully social, wonderfully welcoming and wonderfully engaging. In short, I had a good time. Joe, too, was welcome and engaged. I was often rolling off one way while he went another. I could hear his laugh, which is uniquely his, across a crowded room. It was nice.

When last night was over and we came back up to the room. I felt a sense of real melancholy. I know after today's sessions, I will be with Joe as we pack the car and head to another hotel. We aren't flying home until Sunday, and this hotel is out of our budget, We are going to crash tonight and then hit the town a bit tomorrow.

Here's the thing.

I have to transition from this world, the world of the conference where I am known, as a speaker yes, but as a person too. I get treated as if I belong there, and respected there, and as if I would be missed had I not shown. Joe, too, gets treated as if our relationship matters and his support of me is appreciated.

Now I have to go into the real world.

And it shouldn't, but that saddens me.

I like just being part of a social unit rather than a thing to be stared at, laughed at and mocked.

But, I need to put up my defences, reconstruct them again - they've been down for a couple of days, and I'll be fine.

But I want more than fine.

Just a little more than ... fine.  

The Opposite of Horror!

Photo Description: Air Canada plane flying over a coastal area.

Joe and I approached our travel day grimly.

This may seem pessimistic because Joe and I have had such good service from so many people. But, here's the issue when things have gone wrong, they've gone wrong. Those incidents stay in one's mind and the 'list of things that can go wrong' gets longer and longer. For example, a few years ago a fellow group of passengers stole my wheelchair, which was waiting for me at the door of the plane. Security guards caught them as they were putting into the trunk of a car which had pulled up to pick them up at arrivals level. I got my chair back but the guards didn't know about chairs and therefore didn't get the legs back. It was horrid. Now, it's on the list of what can go wrong and I worry from landing until I'm in my chair. Oh, and then there's the time that the airport guy refused to bring my chair up to the door and sent it on to the luggage cart - causing no end of difficulty.

So, as I said, the list is long.

But we arrived at the airport right on time, even a bit early, Rah WheelTrans. So we got to the help desk well in advance of the flight. The good people there were welcoming and assured me that all my arrangements for the flight, where we sat on the plane, and the assistance needed at both ends was noted. They got us there quickly and with no fuss. They all seemed to know my name and addressed me in a really professional but also a nicely friendly manner. At the gate, the woman there, spoke to me about pre boarding and the fellow that came to help out were both intent on giving excellent service. Now we typically get great service from Air Canada but this was like everyone was having their best ever day at work. Even on the plane, when I spoke to them about the wheelchair and watching out for it so it's not stolen they took me seriously and then came to speak to me at my seat about accessibility options on the plane!!

So the flight was spectacular.

Best.

Service.

Ever.

By.

An.

Airline.

I've been reading horror stories about people with disabilities being treated poorly on airlines, well, whatever is the opposite of horror, insert that word here as an adjective for the way we were welcomed and treated by every single Air Canada employee.

Amazing.

There was a hiccup with the car, they gave us an upgrade, which is a car that I can't get into because the step in is too high. So we had to go back to the desk, going by the kind of car we asked for in the parking lot. We asked for that kind of car, was told they didn't have any, we gave them the space number for it, they went and checked, found it there, and gave it to us. It took a while but we were good. For problems, this wasn't the worst.

So we arrive.

At the desk I'm told we have a room with a roll in shower and I prefer an accessible tub, so I asked if they had one. The desk clerk gleefully said, you room has both options. When you go into the bathroom, turn left for the tub and right for the shower. I was thrilled, I've never had a room with that option before. Then he got concerned and said, "I'm afraid now that maybe this isn't one of those rooms, we only have two like that in the hotel." There wasn't a line up at the desk so he accompanied us up to the room to check and sure enough, there it was ... choices and options!

We sat in the quiet of the room, tired from travel. We were relieved to be there, like any traveler would be, but we were also relieved to be there as any disabled traveler would be. There is a difference in those two experiences, isn't there?

Packed and Ready (As I'll Ever Be)

Photo Description: Vintage tri-coloured wooden suitcases, stacked and packed.

It's a travel day today.

Though I look forward to arrival and forward to the things that are scheduled, it's this day I dread. I've spoke to a couple of disabled people today who are at the point of evaluating the true cost of travel. Not the monetary cost. The cost of that comes from being disabled, having to rely on the discretionary kindness of airport and airline personnel. The cost that comes from anxieties about chairs in airplane holds - will they come back up broken, will they come back up at all? The cost that comes from simply needing a bit of time and being surrounded by passengers who have no time to give.

It's travel day today.

I wanted to write something different this morning. Something more important than this long moan. But my mind is full of the 'oh no what happens nexts' that come with travel. I aim for the other side, for getting in the car (will it be the one we ordered because we needed, not wanted, it?). I have visions of our time there.

I distract myself with thoughts of the best Chinese food restaurant in the world ... the Wing Lum cafe.

I distract myself with visions of driving up Polk Street.

I distract myself with the knowledge that we have time to get to the ocean.

So, in the end, I can't write a blog today.

I will see you, on the left coast, tomorrow.

Paris: Mourning Us

Photo Description: Black tee shirt with white disability wheelchair logo.

Like everyone else I was shocked, appalled, and frightened when I first heard of the attacks in Paris. Like many others I went immediately to the television to watch the news and, simultaneously, went on-line to augment the television reports. I kept myself up to date as best I could, wanting to know the most relevant information as it became available.

But perhaps the most relevant information, to me, wasn't ever mentioned in a broadcast that I saw on television.I found it in two brief lines in an article made available on line from the the Telegraph:

Miss Wilson, 49, originally from New Orleans, also told how she witnessed the gunmen deliberately targeting concert-goers in wheelchairs. The gunmen hunted down disabled people who were sat in an area specially set aside for wheelchair users.

I have searched and searched and have managed to find no other information about the targeting and murder of disabled people at the Bataclan. Forgive me for finding that fact worrisome. The fate of disabled people during the 9/11 attacks was little discussed, though the implications for the safety of disabled people in multistory buildings is, and continues to be, enormous. And, here again, it seems that the discussion of the specific targeting of a particular minority group goes virtually unnoticed and with little to no comment.

Are our lives worth discussion?

Are our deaths considered equally tragic as those of others without disabilities?

Are there ever going to be an acknowledgement, and mourning for, a group picked out and murdered because of their status as a member of a devalued minority?

Are questions ever going to be asked about the extent and nature of ableism and disphobia?

I'm afraid to answer any of those questions. I'm afraid of what this means in terms of how deeply our lives and our voices are dismissed as irrelevant.

I'm simply, sad.

That's to be expected. People lost their lives.

I'm also scared.

That's to be expected. My community has been attacked.

The Baby and the Burden

Photo decription: A picture of a child after amputations carried out on his arms and legs, wording on the picture says: if u ignore u r heartless type amen if he is cute.

This is the first thing I saw this morning when I went on my Facebook page. I'm not sure what motivates this kind of post, I'm not sure what it's supposed to do, I am sure that the only benefit from typing 'amen' comes to the typist not the child in the picture. I'm quite sure that this little kid doesn't care two whits if you think he's cute. I wonder what he'll think of the picture when he gets older - I wonder if he'll wonder about who gave consent for his photo to be used in this way. Or was consent given at all ... was the picture, perhaps, taken by loving parents and then taken from them by someone who saw a poster instead of a child.

But people get to type 'amen' and feel good about themselves because they just proved they aren't heartless. Momentary warm fuzzy and move along to other business, humanity ensured.

I didn't comment.

I didn't know how to put my feelings into words.

So I come here, to write this, and hope that somehow I'll be able to do so.

And I find I can't.

That this little fellow has to pick up the burden of 'inspiration' so young. That he has to begin his life in the way he will have to live it, dealing with the immature emotional needs of those who chose to see him as being made for their benefit and be defined by their need for meaning, rather than to determine and strive to live a life that benefits him and his needs, that finds his own meaning in his own life, seems tragic to me. There will be those who say that he will be a burden. There are those of us that know he, instead, is the burden bearer.

Once again, I say, we need to get our stories out and our voices heard. When I look at this kid, I see a future that includes, school, graduation, love, marriage, children, work. Maybe it's best said that when I look at this child I see, without question, a life full of everything that everyone experiences. Cute or not.

I think that children like this little boy are in real and present danger. This photo doesn't prove that people have heart, it proves that they don't! It proves that they can look at a living human child presented as an object, a thing, without protest. Believe me there were no protests about the picture in the comments, just a meaningless list of 'amens.' He is in real and present danger because as was pointed out by Diane Coleman from Not Dead Yet "Under the Canadian Supreme Court ruling, disabled people explicitly qualify for assisted suicide whether or not they are 'terminal'". 

Other status, or as some put it, the status of being other, is deadly.

I want to do something, change something, make the world better for this little boy. Beginning with this picture, but I don't know what to do.

Help.