Tuesday, September 30, 2014

A Stranger's Nose

Last night, after work, we went to pick up tickets for a show that we've been wanting to see. On the way home I was confronted by some construction that makes it difficult to get from the street to the sidewalk. They'd lazily made a 'sort of ' ramp that is lumpy and bumpy and more steep than I like. But needs must and I headed on up, two elderly women stopped at the top to give me room, something I appreciated. I glanced at them to say 'Thank you' and I was immediately cast back in time. Falling into memory like I'd tripped into a well. All that and I had to still get my chair onto the side walk and moving along.

One of the women had my grandmother's nose. Grandma Neilsen had a very distinctive nose and it was disconcerting to see it, there, perfectly replicated on another woman's face. This has happened to me before, a couple years ago I remember seeing my Uncle Jim's eyes, there was the time I saw Bob's moustache on the upper lip of a man who looked nothing like him. Each time this happens I'm suddenly knee deep in memory.

Grandma Neilsen was my Grandfather's second wife. His first, my Grandmother by blood, died before I was born. I only knew Grandma Neilsen, or Elaine as she was known to her friends, as Grandma and never thought of her any other way. I remembered several things about her immediately:

She was the worst driver possible. Watching her drive away one prayed for her safety and for there to be no other traffic on the road.

She loved writing letters. She and I exchanged letters for many years as a child. I wrote very long letters and I heard her comment, once, to my mother that my letters were ... she paused ... newsy.

She always had 'city airs' even though she lived on farmland.

I remembered the time, after Grandpa had died, that I was in her house and she was showing me pictures in a photo album and one of them was of Grandpa in his casket. I was shocked, I never seen such a thing before, but she sat there looking at it and crying. I'd never seen her cry. I put my arm around her, something I'd also never done, and we sat there together.

I remember once when she was in a mood I made a crack that I thought was funny, everyone froze waiting for Grandma to respond, and to our surprise she just laughed.

All this and more swirled through my mind and it felt like I was visiting her all over again. It was nice, seeing Grandma's nose ... it was nice to revisit our times together. It was nice to be pulled from now to then, to remember that my life is one continuous story, that now will soon be then, that I want to have a story that's full and that's meaningful and that's fun.

Because one day someone will see my nose on a stranger's face.

Monday, September 29, 2014

That Pain Thing

A number of people have emailed me, or messaged me, or texted me; I never realized that there were so many ways to get in touch until now. Anyways, the upshot was that I had written about pain management and how that was all going. I had written about going to the doctor here but not followed up. They were right, I hadn't.

I'm still new to talking about this experience and still a little shy about the whole thing. I don't know why it causes me discomfort but it does. I guess, as I said before, I am worried that it will affect how people understand and process my disability. I had thought that having a disability was a personal experience, I hadn't realized that disability is also a social and political experience. People will layer their own personal views, fears and anxieties about disability on you. People will also layer their political views about disabilities about costs and funding, about access and about resources, and therefore, eventually about the worth and worthiness of your life. Pain seemed to me to accentuate people's fears while lighting a flame under the 'let us remove that pain by assisting you into heaven' people.

So, being open about the pain thing concerns me.

I have indeed been prescribed pain medication, it's not strong, it's not addictive, but it's quite effective. I take one at night time and several things happened all at once. First, I thought the pain wasn't constant but it kind of was, I was just used to it - it felt so strange to be pain free. Second, my sleeping improved to the point that I actually slept through the night. I typically get up very early, but that first night I slept through right until 5 in the morning. Unthinkable.

I feel more refreshed.

In the end I'm glad I went to the doctor, glad he took the time to really listen to what I wanted and what I feared. In fact, he did this twice. I was so concerned after the first consult, I went back for a second. He was good about that and, I think a bit surprised that I was being so cautious about this new step in my health care.

There were are, the update. I should have just written it, not waited until I was prodded. But there you go, I'm cautious.

If anyone is waiting, like I did, if you've got a good doctor that you trust, go ahead, ask. It's an amazing thing to sleep and wake without pain.

Saturday, September 27, 2014

Dave and Joe on our BGW

Sometimes you just get to be at the right time and the right place.

Some background: Joe and I have had the weekend planned for a while. It's our Big Gay Weekend. This is probably a little less exciting than you might be imagining. On Friday we saw two movies, one in the theatre, Pride, and then one that evening, Free Fall. Saturday we're going to Love Is Strange and then Sunday we're off to our local gay theatre company to see Freda and Jems Best of the Week. Rah! A week in gay culture.

So after seeing the movie, "Pride" on Friday we decided to go out for a beer. Along the way we ran into someone who we hadn't seen in a while. After we caught up, he began telling us about his son and the difficulties that his son was having. It turns out that his son has what dad called, a "mild intellectual disability," and that began a longer conversation. He had questions. I tried to answer them the best that I was able to. He was a well informed dad but hadn't been able to ask some questions that truly needed to be asked. He also needed to have verified that his worries were real, the dangers his son faced, socially, were worth attending to. I didn't tell him anything he didn't know, but I was able to give reassurance that action needed to be taken and strong advocacy for the appropriate supports, services and education needs to be undertaken.

It was a good conversation.

It had seemed just chance that we made our way to the pub in the way that we did, it had seemed just like a spontaneous decision to go for a drink after the movie, but after that, it seemed like we were needed to go and be in a particular place at a particular time.

We were in the middle of our Big Gay Weekend, and here were were talking to a father about his son, sharing information, listening to the stories he had to tell. And, oddly, it fit right in, because, of course, a Big Gay Weekend doesn't mean anything more than understanding that the world is big and diverse, that people need people and that love, whatever kind of love is needed in whatever kind of situation, is what makes us all human.

So here's to love, humanity and happy circumstances - we hope for more of those on our Big Gay Weekend.

Friday, September 26, 2014

Ken Jennings: Another Day, Another Bigot

It is not surprising, tragically, for me to read of another famous person saying another stupid and hurtful thing about people with disabilities. This time it's Ken Jennings who, for no particular reason than the thought that bigotry and prejudice was funny, tweeted this message:

"There is nothing sadder than a hot person in a wheelchair."

There was an immediate, and good for us, and thanks to our allies, reaction. People clearly let Mr. Jennings know that his remark wasn't funny and that it certainly wasn't appreciated. Many of the responses from people with disabilities were filled with more hurt than outrage. The message to Mr. Jennings was clear and unequivocal - apologize and take the tweet down.

For awhile there was speculation that Mr. Jennings' account had been hacked. But as time passed,  that proved to be untrue, as the tweet stayed up and as Mr. Jennings acknowledged writing the tweet in this interchange:

Follower: Probably your best.

Mr Jennings: The Internet does not agree.

In that statement Mr. Jennings acknowledges both that the tweet is his and that he is aware of the reaction that the tweet caused. To be sure some of those who reacted were non-disabled people clearly saying that the joke wasn't funny but many, many, more were from people with disabilities making sure that Mr. Jennings clearly got the message that his tweet was hurtful, untrue and that it expressed attitudes that further the cause of discrimination towards people with disabilities.


Given the opportunity to reflect, he does not apologize.

Given the opportunity to act, he does not take the tweet down.

Let's take a look at what he said:

"There is nothing sadder than a hot person in a wheelchair."

I need it to be clear that he said 'person' not 'woman' because many of the responses seemed to think that he was addressing his remarks towards women. He was not, he was targetting his remarks at we, the people, who have disabilities.

His assumption, clearly, is not an uncommon one. The sexuality of people with disabilities confuses the non-disabled. There are a lot of assumptions about us and what we do with our naughty bits. His tweet simply confirmed a lot of stereotypes:

1) We are non-sexual.
2) We do not have the capacity to be sexual even if we wanted to.
3) Our disability immediately makes us unattractive.
4) We live lives of quiet desperation and loneliness longing for the touch of a non-disabled partner.
5) Disability cancels out 'hotness.'
6) Ugly people deserve to be disabled.
7) Disability makes people ugly.
8) "Hotness" is wasted on people with disabilities.
9) If we are sexual or want to be sexual - ewww, gross!
10) Our sexuality and our attractiveness is a subject acceptable for public speculation.

This tweet, once tweeted, tells us little about Ken Jennings. It simply tells us that he, like many people have confused and archaic views of people with disabilities.

This tweet, staying up in the face of heartfelt protest, tells us a lot about Ken Jennings. It tells us that he does not take our sentiments, even powerfully expressed, seriously. It tells us that he does not value the voices of people with disabilities in the same way he would value protests from other minority groups. It tells us that Ken Jennings bigotry runs deep, like ugliness does, to the bone.

Should you wish to enter into this latest attack on our essential humanity, please tweet Mr. Jennings, or leave him a message on his Facebook page.

I suggest that those of you who wish to, contact Mr. Jennings publisher: Little Simon and let them know what you think of someone with Mr. Jennings attitude towards people with disabilities publishing children's books. The link will take you to the contact page.

I suggest that if someone has the contact information from Jeopardy, you send it to me or put it in the comment section so that I can add it here ... write them and find out how they feel about their show being attached, in every news piece about this story, to Mr. Jennings' name. Why haven't they spoken out?

Mr. Jennings, if you ever read this, be comforted that I am a fat gay dude in a wheelchair - and even at that, I wouldn't touch you even if you had a ten foot pole.

Thursday, September 25, 2014

A Turquoise Wrap

On my way home yesterday we stopped at a traffic light. We noticed a young woman walking with her father, her face was light up in a huge smile. Her dad, laughing. A nice scene. As she rounded the corner and came into view, we both noticed that her left arm ended an inch or two below the elbow. That's not what drew our attention to her, it was her and her father's very animated conversation. After her father said something, she started laughing out words and using both arms to help with her description. Natural, beautiful and free.

She then looked ahead.

Her face changed.

She was wearing a bright turquoise blue tee shirt, loose and baggy. Instantaneous and simultaneous with her eyes locking on something further north, her arm quickly dropped to the hem of the tee shirt and pulled it up, wrapping her arm, making her difference less noticeable.

She didn't look fearful.

She didn't look ashamed.

She looked angry.

The light changed, we drove away. But that small movement, that covering up, that defensive gesture has stayed with me. I don't know what she saw, I don't know what was head of her - but at the same time I did. So do you.

Just a teen.

And she knows the world isn't always safe for those with differences and disabilities.

I understand her anger. I just hope that her anger will be appropriately directed. I hope that she is on her way to a wonderful life, full of joy and full of moments like she was having with her father. I hope all that. But I also hope that her anger will turn to advocacy. I hope that she will find the way and the words that she needs to do more than survive, more than prevail.

I understand her anger.

And I know what she saw.

Wednesday, September 24, 2014

Doors (Part Two)

We were at an event with a lot of other people. Hundreds of other people. I had difficulty finding the accessible washroom so I asked one of the people working there and was surprised that she didn't know. She went and found someone who was able to direct me. Joe headed off with me, both because I needed his help and because he's 61 and never misses an opportunity to spend a penny. We found the restroom exactly where we were told it would be.

Now, I need to describe the doors. There were two.They looked like when they were open they would create one large space, but instead they were actually two separate doors. So when both were open, you'd have to go through one side or the other, the door jamb blocked anyone from entering the middle. I hope you have this pictured, I just spent 20 (!) minutes looking for a picture of this on the web and couldn't find one. Saw lots of doors though - kept trying to find meaning in it, poetry even, but sometimes doors are just doors.

Over the several hours we were there I went to the washroom three times. (See what you get to know about a person?) Each time we'd approach the door, open the one I was going to go through, and someone would be coming out of the other side. They'd see me coming towards the door and they'd hold their door open. To NO effect because their actions didn't make my door any bigger or my entry any smoother. Even when either Joe or I said, "Thanks but we're good here," they continued to hold the door until I was through.

Joe and I laughed about it each time. It was silly. The door they held wasn't the door I was going through. They'd be able to see that it was actually a separate door. But they held it anyways.

Here's the thing.

I got to thinking about this. It was weird but they guys doing it weren't. They all seemed nice. I say 'all' because this happened every time I entered and exited the washroom. 6 times. 6 men. None of them stared at me, expressed a need to watch me go through, or did anything even mildly odd. Except hold a door that didn't need to be held.

I began to wonder if these particular guys, and maybe some of the others who have helped in equally odd ways, we acting out of some deep seated, learned as a child, set of manners and morals. Perhaps they'd be taught to be helpful, to be aware of the needs of strangers, to be willing and step in and step up when assistance was needed. Maybe it was kind of a chivalrous action, carefully taught and deeply learned.

Maybe it was less about me.

More about them.

In the situation yesterday, help hurt. Not physically hurt, but hurt my ability to go through the doors. By holding the door he disenabled me from getting out the two doors. I had to intervene and I had to get him to stop so I could go about my business. His need to watch me, I'm sorry, is creepy to me. I wouldn't ask any stranger to watch anything that they were doing no matter how curious I was. That's different.

But maybe it sprung from the same source.

I think I have to be more careful in understanding what people are doing, and why they are doing it, maybe I just need to focus on being heard when I need to be heard. By the time we were ready to go, I had stopped telling the men holding doors I wasn't going through that their help wasn't needed. They weren't in my way, their desire to be helpful was kind but unnecessary.

Unnecessary kindness is to be preferred to unnecessary cruelty.

But maybe it wasn't unnecessary - because what it did, I realize only now as I write this, is let me know, that if I did need help, if there was an emergency, there were 6 men there who were, soul deep, ready.

Tuesday, September 23, 2014

Doors (Part One)

I don't know what I'm taking from them. I'm not sure why a simple, polite, "No, I'm good, thanks any ways," becomes a slap in the face or a humiliating rejection. I want to yell, and I'm going to be graphic here, "It's just a fucking door!"

One of my first big accomplishments as a wheelchair user was to be able to exit my apartment building on my own. There were two differing barriers to be overcome. First is the lobby door. It is a single door that is locked at all times. From the lobby it opens with a push on a lever, I have to do that while pushing the chair forward to get the door slightly open, once done it's a big push to get it to swing open and then another to get over the bump on the floor created by the frame. This is easy for me now. More difficult is the double doors that are the entry and the exit from the building. For this I have to position my chair such that each footrest faces a different door, then, another big push. I cannot go through that door with only one door held open. The balance isn't right, I just can't do it. In this case, help hurts.

So, this guy, a nice guy, holds one of the doors this morning. I'm just through the first door, I'm holding it for him. I say, "No, I'm good, thanks anyways ... I'll hold this one for you." He says he's not in a hurry. I actually am in a hurry, I want to be out by the time Joe comes round with the car. I say again, "No, really, thanks."

Now I get the hurt look.

And a refusal to move.

He stands holding the door.

I explain, I tell him that I can't get out the door with only one getting held, that I can do it on my own but I need both doors to be closed. He begins to reach to hold the other door. I tell him that if he does that I'll have to go out under his arm pit and I really don't want to do that. He smiles at my little joke but continues.

Finally I simply tell him that I appreciate it but if he really wants to help he'll just let go of the door. Joe has now pulled up and I want to get out. He lets go of the door reluctantly. Then he says, "Can I watch how you do it?"

I don't like being watched doing things like this. My day is just starting and this is wearing me out. I shrug my shoulders and push out the door easily.

He's all excited, "Wow, man, that's awesome!"

This is how a fat man in a wheelchair makes porn, inspirational that is.

Monday, September 22, 2014

How It's Done

There was a lot of planning involved. Tickets, always the first hurdle, were cumbersome to get. We were going to a dinner show and the website allowed only one 'special' option. "Vegetarian," was one, "Accessible seating," was another. So, a phone call was made, everything was booked, now we just waited for it all to go wrong. Now don't you call me a 'Negative Nellie' - expecting problems is just part of life when you use a wheelchair to get around.

In fact, it all went incredibly smoothly. We got in, no problem, seating was no problem, vegetarian meal was no problem. More than that, the staff were welcoming. From greeting to seating we were treated with the same degree of welcome that was accorded everyone else. We were both impressed.

The place was packed.


800 people sat at tables round the stage.

Near the end I whispered to Joe that I'd like to get to the washroom before the crowds descended on them. He agreed and we snuck out. In the bathroom we discover that the accessible stall doesn't have bars. It has a tall toilet. It has lots of room. But no grab bars. Yikes. Without getting into a description of what happened next, lets just say it was, um awkward. And, of course, unnecessary.

We went back in. Caught the rest of the show. Cheered for the performers when it was over. As I sat there I thought about the experience. They were clearly welcoming to disabled guests. They ensured, in an interactive show that we, in the furthest seats away, were involved and included. Their attitude and manner were accessible, what's going on with the toilet.

I decided I'd write a note, I didn't want to ask to speak with a manager because, I'm guessing that some of the people that we go out with get a little tired of that. But, as it happened, as I was leaving I got a little separated from the group I was with. I saw a man looking very managerial standing at the exit doors.

I approached him and asked if he was the manager, he was.

I said, "I am going to make a complaint but first I want to say that I had a terrific time, your staff are awesome and welcoming, you've created a wonderfully accessible experience and I appreciate all of that." I paused, reading to move on to toilet talk, in that pause he thanked me for the positive feedback, particularly about the staff. "Because of all this sense of welcome, I was really surprised to go into the bathroom and see that the accessible stall had no grab bars around the toilet. It makes it for some difficult to use, for others impossible to use. I looked at where the toilet was, this is a really easy fix, so could you fix it."

I was momentarily annoyed when I finished and he picked up his phone and began typing. I waited. I wanted to hear what he had to say. When he finished typing he looked up and said, "We've just had the toilets all redone, the handicap bars must have been left off when that stall was redone. I'm sorry. I've just texted the maintenance department, I'll have that done tomorrow."



What? No defensiveness? No explanation as to why it can't be done? No rolling eyes and patronizing promise of some vague future fix?


That, my dears, is how a complaint needs to be handled.


Sunday, September 21, 2014


Gosh, it's been an unusually long time since I've written a blog. I apologize for the unannounced break. We are all fine here.

I thought, or believed, or bought into the stereotype that when you get older things slow down and you have more time to enjoy life.



I had an extraordinarily long week. Working 10 or 11 hour days ... dealing with unmovable deadlines ... being asked to make big decisions on big issues ... getting on the bus at 5:45 am ... takes it's toll. Now I love what I do, but, and it's a big but, there are times that there's too much of what I do to do.

It may sound like I'm complaining. I'm not. I'm explaining. I simply couldn't fit the act of blogging in with all that AND having some kind of home life at the same time.

In reality, when I get overwhelmed like this, a part of me is grateful.

When I first became disabled, when the wheelchair was first wheeled into my hospital room, I had to actively fight off the worry that I'd never be as fully involved in my life and work again. I knew it wasn't true! I knew people with disabilities who's lives were full. In fact, when I thought about it, every person with a disability I knew had a life that fitted them well. Even so, the larger societal stereotype of 'disability' as 'disaster' and as 'disenfranchised' filled my head. I fought depression by pushing away fear with certainty. I KNEW different and, even so, it was a battle.

I never imagined, though, that what was coming was coming.

Instead, I have found that my disability has now informed my work and informed the decisions I make about what I prioritize.


That has made me very busy.

Good busy.

But busy.

So, again, I apologize for being away, especially after the last post.

We are well.

Our lives are full.

And we go on because, of course, doing damns the darkness!

Wednesday, September 17, 2014

Oscar, Twinkies and Closed Doors

I had an experience, yesterday, that once again reminded me of the vulnerability that comes with having a disability. I mean, I know this, I've known it for a long time, but occasionally I am reminded, in real life, in real time, of the simple fact that there are dangers that are unique to my status as a disabled person. What happened yesterday is still too fresh to write about, I need more time and more distance, I need to be able to write about it without fear making my fingers type the wrong words with the wrong keys.

I've studied the research on violence against people with physical disabilities, with intellectual disabilities and those at the intersection of both. I know that people with disabilities are much more likely to be victims of crime - almost every kind of crime from physical assault to sexual victimization to financial abuse. I knew this, once, at an intellectual level. I know this now on an extremely personal level.

My experience yesterday made me want to write about my initial response when I heard the story of 'the Blade Runner,' Oscar Pistorius. The first media report simply reported that he was in a bathroom, when he heard an intruder and panicked and as a result of that panic he fired a gun through the bathroom door striking and killing his girlfriend. After this report much more came out about the case and there are all sorts of pundits, many gifted ones from the disability community, who are looking askance at the verdict and asking hard questions about the facts of the case.

I do not need to or want to do that kind of analysis here.

I just want to record my reaction to what I first heard.

My reaction beyond horror. My reaction beyond decrying guns and the myriad tragedies that happen when guns are readily available. My reaction beyond the deep sorrow of another woman killed at the hands of another man.

That very brief news report, that first one, only spoke of a man with a disability fearing intruders, feeling vulnerable, reacted with panic.

That's all I knew.


I immediately remembered my own first few days as a disabled man. We had moved to Toronto from the country, we lived in a place too small for mapquest or a GPS to find, and I was alone in the bedroom, sitting on the side of the bed, slowly getting dressed. My disability was new and everything was a new experience. It took me a very long time to get dressed. My legs simply didn't do what they had done only days before. I refused help with this task, I would relearn by doing, I resisted help. The same with walking. Today I can walk, short distances fairly well, but I have to be near a wall so that I can orient myself in space by touching the wall with my hand. I fall over in open spaces. My walking, that day that I sat dressing myself, wasn't something I did easily yet.

Joe had left and had anticipated being gone for an hour or two. I knew that just getting dressed and getting out to my desk in the office we'd set up in the dining room would take most of that two hours. I'd be fully occupied doing something that once would have taken me only five or six minutes. Suddenly I heard the front door to the apartment open. Or at least I thought I did. I sat there, listening hard. I called out Joe's name. We were new to the apartment and hadn't learned yet that voices don't carry from the bedroom to the front room. I kept hearing sounds. Movement. I began to panic. I knew that Joe was to be gone for at least another hour and a half.

Who was there with me?

Who had keys to this apartment?

Who lived here before?

I knew I couldn't run. I wouldn't be able to stand up and defend myself. I felt utterly lost, alone and vulnerable. For the first time in my life I looked for a weapon. I'd never done this before. All I could find was my reacher. I'd be able, if necessary, to reach out and tweak the nose of my assailant. Then I heard footsteps coming down the hallway.

"Who is it!!" I screamed, panic filling my voice.

"It's me," Joe said, "I forgot my wallet, I had to come back."

I dropped the reacher and felt relief flood my body.

I tell you all this not to justify in any way someone who fired a gun through the door at unknown persons. I tell you this not to make any kind of comment on the Pistorius case at all.

I tell you this because I'm worried about the commentary I'm hearing about the case. The dismissal of the idea of vulnerability and disability. The dismissal of the fact that with disability is tied to vulnerability at all. I would have loved it if, rather than it being used as an excuse or a defense, someone had begun to look at the very real dangers that people with disabilities face. I would have loved it if it had led to a discussion about violence against people with disabilities.

Instead I think the Pistorius trial has done damage, in the public mind, to the real life experiences of men, women and children with disabilities. Vulnerability and disability has been spoken about almost like the 'Twinkie Defense.' The real people behind the statistics of abuse have real stories to tell and now will tell them under the shadow of a man who reached for a gun and fired through a closed door. That closed door may now be firmly shut in the minds of many to the realities of the lives of those who live with violence and abuse and neglect solely as a result of their status as people with disabilities. 

Monday, September 15, 2014

Strawberries and Dilemmas

We were coming home, a grey and grizzly day, cold seeped into our bones. Yes, summer in Canada can include days that feel like early winter. As we were walking home I suddenly thought of our next door neighbour. We don't really know her that well. Just the usual neighbour kind of interaction - we'll take parcels for her, she'll take them for us.

Recently Joe ran into her and she told him that she was having more and more difficulty getting around and she was fearful of becoming house bound. I mentioned to Joe that we were not in a rush and asked him if we should call her and see if there is anything she needs or wants from the store.

Then began the discussion. We worried that she would feel our call intrusive. We worried that she would regret having said anything to Joe. We worried that she would think that we felt sorry for her. We worried that she would misinterpret our act in some way.

We were almost home when it was decided that we'd just ignore our worries and just make the call. If it annoys her, it annoys her. So, we called. Her voice was wary until she recognized my voice. I told her we were on our way home and wondered if she wanted or needed anything.

She paused.

I waited.

"Strawberries," she said, "and cream."

Another pause.

"I would love to have some strawberries and cream."

There was nothing else she needed. So we headed off and picked the finest basket of strawberries we could find. We got the cream. On our way home we called her with the amount, as she had asked, so she could get the money ready.

Arriving home, Joe helped me into the apartment and then headed over to her place to give her her little package.

It was such a simple thing to do. But we felt enriched by the whole thing.

I wish I worried as much about the things that come out of my mouth when angry or annoyed. I wish I worried about the feelings of others who are at the blunt end of my words and actions when I act from impulse not thought due to frustration or anger or annoyance. I wish I spent the time worrying and wondering and figuring then.

But no, I worry kindness.

And give harshness free reign.

I've got that wrong.

Do me a favour, buy someone strawberries today.

You know who would like them.

You know who needs them.

So just do it.

Executive Functioning: Deliberate Indifference

Today we release the second issue of Executive Functioning: A Newsletter for Senior Leaders in Human Services - the topic is 'Deliberate Indifference' - if you'd like a copy, or to subscribe, simply email me at dhingsburger@vitacls.org . Too, we are attaching NED talks to each newsletter (Network of Executive Directors) as you see above.

Saturday, September 13, 2014


At the intersection of Yonge and Bloor there are three pedestrian crossing possibilities. North <-> South. East <-> West. And then there's 'all ways' crossing where traffic is stopped in every direction and people can cross from whatever corner they are on to whichever one they wish to go. It's kind of cool when you get there and it's 'all ways' because it still feels kind of wrong going both North and East or South and West both at the same time.

Yesterday we were one of the cars stopped right at the crosswalk when the 'all ways' crossing blinked on. We saw a woman in a wheelchair with bright red hair; brightly multicoloured stilettos on her feet; fashionably cool clothing and with the most amazing cape draped over the chair behind her back. She entered the intersection and then wandered in a lazy kind of lovely meandering route. She looked to be simply enjoying the chair and enjoying her ride out and enjoying the opportunity to do a wheelchair ballet in the intersection. Joe had classical music playing on the radio and it was the perfect soundtrack to her movements.

She made it to the curb and continued on her way, the light changed, and we were off. But I was so glad that we had stopped there. I was so glad we had seen even for a few moments. She managed, in front of an audience of cars and fellow crossers, to demonstrate that wheelchairs free us. Free us to move. Free us to travel. And more than that ...

... free us to dance.

Friday, September 12, 2014

Started As a Blog: Ended as a Rant

I do not like Rob Ford's policies or politics.

I do not like Rob Ford's interactional style.

I did not and would not vote for Rob Ford.


That's clear.

Let me make something else clear.

I wish Rob Ford the best in dealing with his latest health scare.

I hope he does not have to drop out of the Mayor's race.

I send him and his family positive thoughts as they face a difficult time.


Now that's clear too.

I follow Toronto politics fairly closely, reading most articles in most papers about the various candidates and their positions regarding issues that matter to me and to other Torontonians. I sometimes, though not often, stray down into the comments section of a particular article. I always do this with trepidation because, WOW, can people be brutal. With Mr. Ford, the comments veer from the very nasty to the outrageously nasty. Pro and Con - both sides tear at each other.

With the health scare, though, I see so many people who either say outright or pretty clearly imply that Mr. Ford deserves the tumour he has been diagnosed with because of his weight. "He didn't take care of himself, he's fat, what did he expect?" is the essence of these kind of comments. There are a lot of these kind of comments.

It's clear that fat people don't deserve sympathy, they deserve blame.

It's clear that fat people ask for every bad thing that happens to them.

It's clear that fat people ultimately deserve some kind of punishment.

A lot of these kind of comments are written as if the writer thinks they are funny. They are not.

Others think they are original. They are not.

People tell me that I shouldn't pay attention to these kinds of comments and dismiss them as 'written by trolls' or that people are just 'trolling' or that people under the cloak of anonymity don't need to be taken seriously.

I disagree on all counts.

I think these comments are a good way to get a sense of what people think but don't say and feel but don't reveal. I think anyone in any social movement needs to read these as kind of a free glimpse into the reality of our social world.

Racism - alive and thriving.

Sexism - bigger and badder than ever.

Homophobia - white hot anger continues.

Ableism and Disphobia - disturbingly violent.

Fat prejudice - completely ubiquitous.

Rather than ignoring these kinds of comments, these kinds of attitudes, I think we need to use them to prepare ourselves to live in the world as it's truly socially constructed. But I think we also need to use them as a means of understanding how to target appropriate pathways to social change.

In my work with people with disabilities I am always careful to teach about the world as it is, and how to live safely in that world. It isn't an easy world to navigate but it becomes safer when you understand that it's unsurprising that teens would dump feces and urine and slop on the head of an autistic kid. Don't you read the comments about autism? Don't you read the ignorance in newspapers? Those kids need punishing, kids with autism need to be better prepared to live in a world where that is entirely possible to happen.

Parenting, or otherwise supporting people, of any age, with differences means that an awareness of the intolerance, nay, hatred, of difference in our social world needs to be part of that training. Learning how to mistrust - trust and mistrust as skills as much as they are feelings. Learning how and when to be non-compliant - non compliance is a skill not a behaviour. Learning how and when to use your voice - we don't give voice, we suppress voice, it's time to help people discover the voice they've had all along. These are the jobs we need to do.

Just read what people have to say about Mr. Ford to be reminded that people who are different DESERVE PUNISHMENT ... and you know exactly what we have to do in order for people to live freely and safely in the world.

Thursday, September 11, 2014

Words Do What Words Do

I had a bucket of cold water thrown in my face the other day, and it was only partly because of an 'ALS' ice bucket challenge. I have watched a number of these and find them alternately funny, creative and moving. This one began with someone I know making a joke, wording approximate, about how someone had suggested he was a 'girly man' and that he was going to prove that he wasn't a 'girly man'. I stopped watching there. I grew up in a small mining town and tended towards what was called 'sissy' behaviour. I didn't like sports. I didn't like trucks. I didn't like rough and tumble play. I was called a 'girly boy' for several years and it is a term that, now I see, is offensive both to women and to gay men.

I left a comment, in the comment section, saying this. I felt it was a fair comment. After all the term was used, it was acknowledged that it was a negative term and there was clear need to prove that that term did not apply to the man in the video. Now, I know this guy, I know he would never intentionally hurt anyone, I know he doesn't have a homophobic nature, I know all those things. But. Words are words and words do what words do.

He was a total gentleman, and I mean that in the literal compound parts of the word - gentle man - about it. He called me up and apologized. Said he had no intent to hurt or to use terms that hurt. The next day the post was taken down. Simple.

Not so simple.

I have gotten, and still continue to get, messages on Facebook, where I saw the video, from people telling me to apologize and to ask for the videos return. I've politely said, 'no' and firmly said, 'no,' and am moving to an angrier, 'no.' I have been called thin skinned, I have been told that I'm over reacting, I've been told that I attacked this man and should apologize humbly and publicly and ask his forgiveness. No.

I told the fellow who made the video about this and he said that he was pleased to have had the comment and that he learned from it.

Well, clearly, others didn't.

What surprises me and disheartens me is that the people who are after me about this would be the same people who would be writing and commenting positively if I stood up to someone who used the 'r word' or someone who used a racial epithet. The same people. The very same people.

The same people who, if someone said, 'oh he didn't mean it that way,' about a star who used the 'r word' would not accept that as an acceptable reason for using the word. They know, in a different context, that words are words and words do what words do.

Why can't they simply see that it doesn't matter who a word hurts, it just matters that a word hurts?

It seems simple to me.

But, like a bucket of cold water in the face, I realized that for many, it's just not simple.

This all is especially sensitive to me right now, as I've written about, because I've had to see my doctor about ongoing pain that results because of my disability. As I wrote, a couple of days ago, all the 'girly boy' stuff has come back to haunt me and taunt me just for admitting publicly that I can no longer deal with the pain on my own, I need help. This morning, I received a message on Facebook about the incident with the video. I was a bit surprised because it's died down quite a bit and I thought it might be over.

Here is the text of the message: "Hey girly boy, where's the apology?"

Now this comes from someone, a professional woman, who does this without the cloak of anonymity. That's how deep the anger was towards me for having spoken up, and more probably because I spoke up to a particular person.

The intent of the message was to hurt me.

I am surprised to say, it didn't. It shocked me. It appalled me. It annoyed me. But it didn't hurt me. Over the last weeks dealing with physical pain, dealing with my own history of being taught that men don't feel or admit to pain, of being taught that only sissies need help.

Well, this sissy needed help, this sissy asked for help, and this sissy says, "sling your shit at someone else, cause you can't hurt me any more."

Wednesday, September 10, 2014

Oh. Shit. Sorry.

After a meeting, one of the women hung back a bit and then told me that she is dealing with a medical situation that is slowly leading to her needing the use of a wheelchair. We talked about that for a bit and then she asked me how I found my wheelchair. Her question was like pushing the button to launch a rocket.

I told her that adapting to the wheelchair would be much easier than she might imagine. Her world would get bigger not smaller, she'd be able to do things and go places that, right now, might seem unimaginable. Learning to negotiate around people and other barriers would become second nature to her. If you can manage to walk, you can manage to roll.

She looked at me, with what I thought was interest. So. I continued.

I told her about the social change. People would perceive her differently. I gave a few examples about 'disappearance' from the social sphere, about loss of voice. I told her that, for me, I had to really be ready to be assertive, not aggressive, so that I would be considered in interactions, that I would be 'seen' in line ups, that I would be 'heard' in placing my order at a restaurant. Managing a wheelchair was one thing, managing the social aspect was another. But, I reassured her, that she had all the skills necessary to assert herself as a person with a disability because she had learned to assert herself as a woman in business.

I was done but she still looked at me with interest. So. Of course. I continue.

I told her about choosing a wheelchair based on it's 'rollability' and told her the test I used when buying a chair. I talked to her about the various kinds of barriers the chair would face, carpet being a big one. Other physical barriers would also need to be considered, she needed to think about the width of the chair and the width of her doors at home. The wheelchair would open up her world but it would also close down some of it too.

I was running out of things to say, but she was still looking at me. So. I stopped.

She said, "I meant where did you buy it?"

Tuesday, September 09, 2014

Pain Times Two

Tomorrow looms large in my mind. I'm going to have my first discussion with my doctor about pain management. I've not really talked to him much about pain, mostly our visits have focused on issues other than anything directly related to my disability. I don't know where the reticence I have about seeking help for dealing with pain comes from. I don't know why it bothers me so much. Pain is simply pain, I know that. Asking for help to manage the pain is, or should be, simply a logical next step.

But for me.



I had hoped that by making the appointment the pain would just go away, the way a toothache disappears in a dentists waiting room. But, it didn't. It's been mostly manageable. But just mostly. I've startled Joe sometimes with a sharp intake of breath when the pain gets difficult to bear. He's not said but I know he's glad that I'm going to see about getting some help.

My wheelchair helps me get around, I see that.

The grab bars in the bathroom helps me stay clean.

The reacher that sits beside my desk make the floor accessible.

All those are fine for me.

Why is this bothering me so much?

I grew up in a small mining town where men were men! The worst thing you could be called, as a boy, was a 'sissy' or a 'girly boy'. I was called those. Often. I didn't like boy things, like trucks, dirt and baseball. I learned that boys didn't cry. I learned that boys didn't admit to pain. Break your leg? Shake it off man! These lessons were taught often and failure to learn lead to social punishment of the highest order. You could shame your family by crying in public.

Maybe all these years later I'm still fleeing from the idea of my 'sissy-hood' ... even though I don't buy into those stereotypes. Even though I know that the term 'girly boy' is equally offensive to women and to men. Even though I know that pain is just pain and help is just help. I can't help but feel that tomorrow, in asking, I will somehow be less.

Sexism hurts everyone.

Monday, September 08, 2014

The Tale of Two Tickets

Sometimes being disabled take just so much time and so much work. Let me give you an example. Joe and I wanted to make reservations for a special dinner show. I went to the web site, scanned it for information. All I wanted to know was simply, is the venue accessible? I went to the FAQ section and found tons of information but none that told me if I could get in, and if  got in could I get to a table and if I got to a table, would I be able to use the 'toilet facilities' while there. Nothing. NADA. Not. A. Word.

Oft times I give up at this point. Let me rephrase, I decide to 'boycott' (that sounds better) because if you can't be bothered to put relevant information on your website, why should I both coming. But really, I usually just give up. But this time, we wanted to go fairly badly, so I went to the contact us tab. Here there don't give you an email address to write, which is often the case, you have to fill out this long form giving them your name, your address, your phone number and your email address before you can fill in the little box with your question. That seems like a lot of personal information to be giving away when you just want to know if you can pee in their toilet.

So that done. I got an email back telling me that I just needed to put 'wheelchair access' onto their on line form for a reservation. OK. Good to know. I set about to do that, have the form nearly filled in when I go for 'special accomidations' and find that I can select either 'wheelchair access' or 'vegetarian meal' but not both. Wheelchair users simply can't be vegetarian on this form. I decide I'll call them the next day.

Now three days after first trying to make a reservation, I call. The woman is very nice and let's me talk first about how there should be information on accessibility on their website, that there should be multiple choices offered on the site for people with disabilities. That done, it's kind of obligatory isn't it, I was even kind of bored saying it. It was all done over the phone with the woman helping me. She was tremendously nice and provided a LOT of information about accessibility and seating, answering all my questions with ease.

We got the tickets. Yeah! But it took, time, effort and determination. Again, my disability is one thing but the needless barriers that we face as disabled people can just be freaking exhausting.

Now that we have tickets, we both wonder, what happens next. Because, accessibility seems to be a word with many definitions doesn't it?

Sunday, September 07, 2014

Where The Power Lies

We were at the pub yesterday, having a quiet drink, when we met someone we hadn't seen for years. It was like a ghost walking into the room. We'd thought for certain that he was dead. Last we'd seen of him he was, we thought wrongly, hopelessly addicted to drugs. As the addiction grew stronger, he was unutterably diminished. Then. He was gone.

We assumed the worst. It was tragic because he was young, vital, smart and compassionate. Even at the height of his addiction you had a sense that behind the fog was a man, trapped a screaming. He would have been offended by this sentiment, but it was how we both felt. And. He was gone.

But he walked into the pub. He expressed shock to see him, he expressed pleasure at seeing us. He got a beer and sat down. Over the next hour we talked about where his life had taken him. After he fell of the radar he went back and finished high school, then went on to University and ultimately got his masters. He had lived rough as a young man and he wanted to work with the homeless so he became a social worker for seven years working with people who needed a home within and a home to live within.

I asked him if I could ask a personal question. He made a joke and then, quietly, said, 'go ahead.' I asked him what had happened? How he had managed to grab the reigns of his life and drive through the fog. He said, "I suddenly realized that life was too short." I shook that answer off, I said, "People say that, they talk about hitting bottom, but I think that's just a simple way of explaining something complex. What was it that made you 'realize,' what was it that 'woke you up'?  He said that he didn't know but what he did know was that he had choices, choices he didn't realize he'd had before. And he could make one good choice after another.

Then he asked about my disability and being in the chair. He'd been honest with me, I was honest with him. I gave him a brief version of the story. Afterwards he said, 'I feel for you man." I told him that he didn't need to. My life was virtually the same as when we knew each other years ago. I still work, I still travel, I still lecture, I still write. In fact, I told him, I felt that I was now doing some of the most important work of my career. "But doesn't it make you feel bad being out there," indicating the world, "in a wheelchair while everyone else is walking?" I told him that it was the attitudes and assumptions of others that were the problem, not the getting about.

We'd now hit common ground. He knew, of course, the attitudes that people held to people who had histories like he did. He knew, of course, of the mistrust that comes from others about his own recovery. He knew those things. Then we moved to a discussion about how the prejudice of others had no place in our personal journeys. He had to shake off addiction and shake off others expectations of failure. I had to adapt to my disability and shake off the sudden devaluation of my life and purpose.

Different paths. Different journeys. But common ground. We left the bar feeling refreshed somehow, hopeful somehow. It was nice to see him and hear his story. It's nice to have seen the resurrection of a man thought long dead. It was a miracle of his own making. "The power lies within," I thought, "within the choices we make."

Saturday, September 06, 2014


For those who haven't used the subway system in Toronto, let me explain how I get into and out of a subways stop. On entry, along with several turnstiles where the bulk of those entering go through, there is a spot for wheelchair entry. You approach it, put in a token or swipe through a pass, and then a gate swings open leaving room for you to get through. Once through, the gate closes. To exit you approach the same gate, push a button, the gate swings the other way allowing exit. It's a simple and effective solution. It's, of course, used by all sorts of people; those with strollers, bundle buggies, large packages, bicycles as well as those of us who use wheelchairs.

Yesterday we headed downtown to go to the theatre and pick up tickets to go see the 'Last Night of the Proms' next Saturday. We wanted to be sure that we had tickets for the both of us and a couple of friends, it's become a tradition for all of us. The subway was packed on the way down, just packed. I was the last to get out and then just pulled over to the side for a few moments to let the throngs get out and get passed me. The subway platform is a little frightening to me and I fear that my joystick will get bumped in a crowd and send me plunging over the edge.

As the crowd thinned out I noticed a disabled woman, walking very slowly and carefully towards the exit. She wore a helmet, which looked like it had been battered and bruised by several falls, she used a complicated kind of cane that assisted her with a complicated kind of walk. She, like me, was being careful, clearly understanding what it is to be someone who moves slowly in a world full of people in a rush.

She got to the exit just before me. It looked like she was going for the accessible exit, but she did not. She stopped just beside it, at the turnstile next to it, then began a routine of dealing with cane and getting her body into position to go through the turnstile. I, being careful to not startle her, made a wide arc around her which took me to the accessible exit. I pushed the button for the gate to slide open as she pushed to go through her exit.

She spoke to me as she went through, "At least I don't have to use THAT exit. I can still get myself around just fine." She smile a superior smile, very proud that she wasn't a member of the disabled classes, and slowly moved on.

I felt quite stung. It's one thing to get that kind of attitude from the great non-disabled throng, but to get it from someone who has a clear and noticeable disability, was something else. I have always known, of course, about the 'disability heirarchies' .... the one they use and the one we use. She was clearly stating to me, "whatever you think, don't think that I'm one of you, I am more than you, I have value because I walk and I don't use adaptions." Well, except for the complicated cane and the helmet, perhaps.

The absolute need that some have to disavow their disability status strikes me as so sad and so unnecessary. I know we are surrounded by negative messages about disability, I know that we are targets of hate and hateful behaviour, I know all that. But pride beats prejudice every day of the week. Her need to slap out at me, letting me know that her exit through the turnstile allowed her entrance into a different world of respect and acceptability than mine, seemed to come from a deep place within her. A place where fear of her own difference gave her the need to punish that difference in others.

I fought the impulse to shoot back at her. She may have been mean, but anything that I said would be have been cruel. Even the mildest rebuke like, "Honey, look in the mirror, you are as disabled as I am" would, I think, have crushed her.

So. I said nothing. I let her have this moment. I expect she's experienced unkindness elsewhere, she didn't need it from me.

There are times my heart slaps hands over my mouth. This was one of those times. I hope though, that she can begin to embrace who she is, I hope she can lose the fear, I hope that she can experience, for a moment what it's like, to simple be herself.

Friday, September 05, 2014

Two Men, A Bus Ride, A Prayer

Often on my rides to work, because I go so early in the mornings, I end up at a hospital or two along the way. People going to early appointments, people being picked up from over night treatments, the bus fills and empties as it makes the long journey to my workplace, up on the edge of the city. Most people, at that time in the morning, don't chat. Virtually all give warm greetings and warm wishes of 'good day' or 'good health'. The bus is a quiet communal place, silence, I have learned can be warm.

At one of the hospital stops, it is possible to look out the windows of the bus and through the windows of the hospital. There is a seating area right inside and, trip after trip, I see people gathered there. Most of them are older. Most of them are with friends or family. It looks like a coffee shop, without coffee where most are wearing robes and gowns. It's easy to tell who the visitors are!

Over the past few weeks I've noticed a couple. They both look old, and given that I'm over sixty, when I say old I mean old. They sit together, in a hospital, talking and laughing. They are always touching, his hand over hers, her hand on his shoulder. It is like while they are laughing, they are holding on for dear life. She is wearing street clothing, he is in robe and gown. It is very early when we get there, she is always there. It gives me comfort to think that he has such warmth, love and companionship while he is there in the hospital. It gives me comfort to know that she has such warmth, love and companionship while he is away from home. Few notice that it works both ways. I do.

I had noticed two older men, maybe seventies, maybe older, who are always there as well. I hadn't noticed them on my first couple of rides because one of the two is a smoker and was often out front sneaking a cigarette. They must have caught him, or maybe he's quit, because now I see him sitting with the other man, who I had noticed before sitting alone in his wheelchair, in the mornings. They talk and laugh too but they never, ever, touch.

Until yesterday.

I was waiting as the driver assisted someone who is a very, very, slow walker, into the building. I glanced through to see who all was there. I saw the man and the woman, chatting, touching. I then noticed the two men. They both sat quietly. They both looked drawn and scared. Then someone came wearing hospital greens, he chatted with both me, then began to pull the fellow in the wheelchair away. I saw, but did not hear, a protest from the man left sitting at the table. The wheelchair stopped moving away. He lumbered up and came over. He leaned down and kissed the other man, who reached up and held on. They stayed like that for a long moment.

The driver was back, the ramp was folded. I was told I was the next drop off. I rode in silence. Thinking about those two men. I knew why the didn't touch, they came from an era where they learned that touch was dangerous, that touch could kill. I knew why they kissed. They no longer cared. One wouldn't leave the other without a kiss on the lips.

I could think of nothing to do but pray. They will never know that a gay man, sitting in a wheelchair, on a bus, bowed his head and prayed that they'd have more days. Many more days.

Or even one more day.


Wednesday, September 03, 2014



It's over.

I've got to go back to work.

We had a great vacation. A really great time. We did only what we wanted to. We kept it slow. We had fun. We laughed more these five days than we have in a while. We stayed home, we used the city well, we set a couple of goals for the time off, and didn't achieve them.

Once again I am so surprised at the way my disability didn't really enter into our consciousness in any real way. Perhaps because the city is increasingly accessible, perhaps, more likely, we've learned how to negotiate the city in consideration of the wheelchair.

Whatever it was.

It just didn't matter.

Sometimes when I am busy with travel or with work or with meetings and new spaces, I dwell a bit on my disability and the access issues that come with it. I need to do this. I know it's important.

But gosh was it great to get a break from it all.

From work.

From worry.

From experiencing disability as anything other than a different way of being, a different way of moving.

It was freaking great.

Tuesday, September 02, 2014

Update: SSS - September Issue Released

The September Issue of Service, Support and Success, the newsletter for direct support professionals published by Vita and Hands: The Family Health Network. This month's issue is about supporting people with Fetal Alcohol Syndrome. If you'd like a copy, or a free subscription, please email dhingsburger@vitacls.org and indicate if you'd like the single issue or a subscription.

Monday, September 01, 2014

Labour Day: Alchemy

This morning we were out a bit early, decided to grab a bite of breakfast out before fully starting the day. As we took our seat in the restaurant a woman with an intellectual disability came in accompanied by her support worker. She glanced at me and smiled. I smiled back. We didn't speak. I had worked with her several years ago, gosh more than several years ago, when she was experiencing some really dark times.

Her behaviour, then, was out of control rage for the years of abuse and victimization that she experienced. It was a long hard road that she and I travelled together. Eventually, through the support of a family that loved her, a group of dedicated staff that were committed to making a place of welcome and safety, and the strategies and coping mechanisms that she and I worked on together, she came to a kind of peace. Not with her past. Never with her past. But with her present and with her future.

Seeing her was good.

I saw surprise and warmth on her face when she saw me. These looks were followed almost immediately by worry. She glanced at her staff; a large woman with a stern mouth tempered by kind eyes. I knew that it was important that I not greet her. Our hellos had been said with eyes and with smiles. Nothing more was needed of me. Nothing more was wanted. Her privacy needed protected. Announcing to her staff that I was once her Behaviour Therapist would be a violation of trust. She hadn't needed me, or anyone in that capacity, for many, many years.

They sat at a table not far from us. I heard them chat. I heard them laugh. There was an ease in her laugh; there was genuine delight in the laugh of the woman with the stern mouth and the kind eyes. They were enjoying their morning, they were busy talking about the plans for the day. Labour day.

It was such a typical kind of scened someone who needs support, receiving support.

But it really struck me, on this Labour Day holiday, about the nearly invisible victories that direct support workers have almost every single day. They make community possible. They make connections happen. They take lives that have been damaged and turn them, through the alchemical properties of skill when combined with caring, into lives with a joy for living.

They work today.

Thousands upon thousands upon thousands of direct support professionals. They got up this morning, early, and left their families on this holiday Monday, to go out and make this thing called 'community living' happen. Their work, done well, doesn't look like labour. Their work, done well, is, however, work. It's the kind of labour that changes lives, changes families and changes communities. It's the kind of labour that requires dedication and self-discipline and determination. It's the kind of labour, done well, that is exhausting.

When we left the restaurant I turned to look, to maybe catch her eye to say goodbye, but she was too busy chatting with her staff and eating her breakfast to notice me. But that's OK, we'd said goodbye a long time ago. And since then, she has been supported, every day, by the labour of people who aren't often honoured for their work or for their achievements.

So today.

People with intellectual disabilities have never had a guaranteed right to freedom so, I salute all of you who are out there right now, making freedom possible.