The Odds. (the restaurant part one)

I was asked to follow the hostess to a table in a restaurant. There were 6 in my party, including me, and I was at the head of the line up. The hostess walked too quickly for me to be right behind her, I had had to back my chair up and turn it round to go into the room where she had gone. I saw her at the far end of the restaurant waiting, impatiently. I looked around me. There were a few empty tables and then a really, really, long table fifteen seats long, on either side.

A waitstaff saw me look and said that they had a really large group coming in and the table had been set up for them. I looked back to the route that I was to roll. Even now it was a narrow passageway and there were no customers seated at the large, long table, and no one at the few smaller tables on the other side.

Instantly my mind pictured what it would look like in just a few minutes. I could see that the passageway would become completely blocked and any attempt to either go to the washroom or to leave would mean asking every person seated to pull in their chairs or otherwise make space for me. That would be 15 at the least and more if there were people seated at the tables.

The question that formed in my mind?

"Is it possible for there to be 15 to 20 people seated at tables that would be gracious or generous enough to move chairs without negativity or hostility?"

Sadly, I decided, that this was not possible. That it was a pipe dream because the odds aren't in my favour. My experience as a disabled person in requesting space for safe passage has taught me that I am tolerated but not welcomed in places like this. My experience has taught me that, though I can get into places, those that have ramps or flat entrances, getting in is not the same as welcomed.

We sat on the patio.

And I said none of this to the people I was with. It's not always about me, even if, in my mind, there are significant ramifications to my understanding of myself as a 'community member' ... and my realization that I still have to put quote marks around that phrase.

What happened on the patio?

That's for the next post.

Stop Over

It's been a few days of figuring out, of planning, of phone calling, of double checking. What I mean to say, I guess, is that it's been a few days of being disabled and living in a world where accessibility of space and in attitude is neither promised or guaranteed. It's all the result of a mistake.

We were asked to do a presentation in a small city in the United States. We checked and found that Air Canada, the only airline we fly, had a non-stop there. When we booked the tickets though, we found that Air Canada flies there on their summer schedule not their fall and winter one. We have to a stop over in an airport that we consider, from our experience, not wheelchair friendly. We also have to transfer to an airline that has caused us problems in the past, the plane is fine, the attitude isn't.

So now we are faced with travelling to speak at an event that we would have turned down if we knew about summer and winter schedules of the only airline left that we trust.

More than that, we've moved. Our old solutions for getting to the airport are no longer options and we have to develop new ways to get ourselves back and forth, from here to there and back. Our initial ideas simply didn't work when we sat to figure and others were way to expensive.

For two or three hours over two or three days. Calls were made. Flights were booked. Seats were chosen. Transit was planned. Then began the double checking. Rooms, accessible. Timing for transit set. Calls to ensure accessibility and understanding about the wheelchair. Painstaking work. Tiring work.

Travelling with a disability means planning and troubleshooting and having emergency strategies tucked in your pocket. Travelling with a disability means being ready, willing and able to deal with gate attendants or flight crew who don't think you should be there at all.

Travelling while being disabled and fat - well that means dealing with sitting at a gate with everyone hoping that they are seated no where near you. Sunscreen protects from cancer, self esteem protects from corrosive attitudes, they both sometimes need to be slathered on thickly.

So, it's done.

So, we are trusting our planning.

While both being quietly terrified of what happens next.

10:00 O'clock Pear

I had my 10 o'clock pear at 8 this morning. I live a lot of my life like that. The cool thing is, I get to make that call. I get to feel the regret for eating the pear now, when 10:00 hits. But right now the pleasure of the just ripe, just right, pear is still tickling at my taste buds. So, I'll cope at 10. I will. I've learned to, because I make tiny little decisions that have tiny little consequences all the time.

The other day I heard a mother say to a teen aged child with a disability, "No, you know you don't have snack until 2." It was 1:45, I shit you not. The girl, looked defiant for a couple of seconds and then sat back into compliance.

Really?

That mattered?

Really?

I know, I know, I know, that I don't know the people or the situation and there very well might have been a reason for the 15 minute delay. So don't. But can we all realize that people with disabilities are over programed, over scheduled, over controlled and worst of all, over ruled, all the time. All. The. Time.

Simple requests get called behaviours.

Realistic disagreement gets called non compliance.

There's a lot more names that we call people with disabilities, isn't there?

But when you live in a world where you:

Have to ask for a snack when others your age simply get what they want from the fridge.

Have to eat on a schedule you didn't set and probably weren't consulted on.

Have no flexibility on that schedule or any other schedule.

Isn't there a need for even the tiniest of rebellions?

"Speak up!" "Disagree!" "State Your Point!" I yelled all these things in my mind.

But she doesn't need my voice.

She needs her own.

I pray one day she'll have one.

Apologies

Apologies are interesting things. I am familiar with giving them, I'm human and I make mistakes. I'm always careful with my words, I know that apologies matter and I know that for any kind of reconciliation they have to be sincerely meant. Years ago I read a witticism, "This job requires sincerity, once you can fake that, you've got it made." We all know, and most of us detest, insincere apology.

The apology I dislike the most:

I'm sorry that you were offended.

Apologies that place the blame on the recipient annoy the heck out of me. But I have a new one to add to the list.

Over at the mall, I was rolling around in my power chair. A handsome man, with a body he liked showing off in a tight tee shirt, saw me pull around a corner. He burst out laughing when he saw me and then pointed me out to someone that he was with. They, too, laughed. This is not uncommon for me, for those who have mixed meanness with sense of humour, I'm a perfect target. They saw that I saw them, it didn't matter.

Days later we were back in the mall but I was in my manual chair. I was pushing myself around, stopping and looking in shops and doing what one does in a mall. Joe and I had separated when he headed for the bathroom. I saw him up ahead coming towards me so I sped up and was pushing fairly hard to get to him. I rolled by the handsome, slightly cruel man, on my way. He called out to me to stop. I was startled, but I did.

He came to me, smiling, friendly now. He said that when he saw me in the chair he imagined that I was another lazy disabled person but now that he saw me in my manual chair and pushing myself independently and quickly he realized he had made a mistaken assumption. He stressed how impressed he was by my speed. So, he apologized for his behaviour.

"So it's okay for you to laugh and make fun of some people, because they deserve it, and others don't?" I asked, seriously interested in his answer.

His face hardened and he said, "I apologized, okay."

That was the end of our conversation.

I don't like apologies that come with the suggestion that it was wrong to be rude or mean or cruel to me because don't belong to a class of people who deserve it.

Really?

Apologies are supposed to involve some reflection aren't they?

I had thought so.

What He Called Me

I was rolling to the gym. I had rolled from the parked car over rough pavement, up the curb and uphill to the entrance and was now easily pushing over to the gym. I was thinking about my workout, deciding if I wanted to try for a personal best on the armergometer or if I wanted to focus on weights. Joe had gone on ahead to check in for swimming so I was enjoying mentally preparing for the next hour and a half.

Suddenly a voice, directed my way, "Can I help?" A man is veering towards me from his wife and child.

I am startled, pulled out of my thoughts, and said, "With what?" I couldn't imagine why he was asking me. I was pushing quickly, I clearly knew where I was going, I was making my way, just like he was. I saw that my question, not asked with hostility had upset him, which was not my goal, but it all happened so quickly. So, I said "Thanks anyway." He smiled but wasn't mollified.

When I got to the gym I was telling some people about it and I said, "Here I thought that I cut the figure of an independent man and instead all that he could see was a cripple. A cripple who would always need help from others." Again I could see that I'd upset people. They didn't like the word 'cripple' and I could see they didn't think I should speak that way about myself. One said, "At lease he didn't call you a cripple." I said, "Oh yes he did, you can call someone a name by how you behave toward them."

It is entirely possible to call a woman a 'b-word' by the tone you use.

It is entirely possible to call someone the 'n-word' by the attitude you adopt.

It is entirely possible to call someone the 'r-word' by the ease with which you step up the hierarchy.

So yeah, he called me a 'cripple' or he related to me as a 'cripple' in exactly the way that non-disabled people use the word. I can use whatever word I want, I can tell the story from my own perspective, I can relate to my disability, my way.

I don't think anyone really got it.

People feel good that they don't say certain words, and to that I say, it's time to up your game. How about eliminating hate from words and discrimination from behaviour?

Now there's a challenge.

Still don't know what the hell help he though this particular cripple needed.

Help Me Write A Letter

I went to a movie the other day, one that I had looked forward to seeing. I was enjoying myself and then something happened. One of the characters in the movie, played by an actor I really like and one that I respected as a person, used the R-word. By the time this happened, I was well and truly into the movie and enjoying myself. We had chosen this movie because we wanted an escape from real life. We wanted to just get away, take a mini holiday from everything. The movie had started well and we were packed and on board.

And then.

That word.

That hateful and entirely unnecessary word.

It's a word whose elimination enriches vocabulary rather than restricts speech.

I was pulled out of the movie, my bags went flying around me, and I was back in the real world. The one with bigotry and intentional hurt and social violence and complete disrespect for the people who have intellectual disabilities. That world. 

I'm angry.

A screenwriter, presumably one with both a dictionary and a thesaurus, presumably one who lives in the same world that I do and is aware of the hurt caused by words, who is paid to write to entertain and, maybe occasionally inform, lazily stuck a word into a script that would toss passengers off the train. I am not a highly paid Hollywood screenwriter and I could have come up with a whole pack of words that could of been used and would have elicited laughter like the R-word was intended to, but didn't in the theatre that I was in. 

The actors must have read the script before and did any of them say, "Hey, this word here, not a great word to be using, it will hurt some people in the audience, it will take away from the pleasure of our movie." I don't know if they did or if they had power to change a word in the script, but I'm guessing that they did.

So, I'm sitting in the theatre no longer a part of the movie but simply watching it. Part of my mind is following the story and part is thinking about what I can do. I can leave. I can complain and get my money back. But I've done that before and I don't believe there is any impact at all. I don't believe that anyone knows and that there is any outcome from doing that.

I stayed. I worked to get back into the movie, and I did, my baggage was left in the theatre waiting for the movie to be over, but I did manage to hop back on.

I'm going to write to the actor who said the word. I'm going to ask him to think about it when reading a script. I like this guy. I like the stands he's taken and how he represents himself, I'm going to tell him that.

I wonder if you could help me write this letter. Tell me some of the things you'd like included. What does this experience do to you when you are watching a movie. I often find in my comments here and on Facebook ideas that I wish I had incorporated into my writing, so if you could help me again now, that would be awesome.

Milestone

I just crossed the 3.5 million page views mark for 'Chewing the Fat' ... 'Rolling Around in my Head' ... 'A Battered Aspect'! Thank all of you good and faithful readers over the 7 years that this blog has been around.

The Question

When I moved here, one of my first calls was to the transit system to set up wheelchair services to get from work to home. I discovered that the system here is different than the one in Toronto in one significant way. In Toronto I get on a specialized bus and they take me to work. Here they use an 'integrated' system and I would be picked up by a specialized bus, taken to the bus station and then take two regular buses with typical passengers and then land at a spot where a specialized bus would pick me up and take me to work. The process takes a very long time. So, it's not going to work for me because they can't get me to work at the time I want to be at work.

However, I wanted to, perhaps, use the system to get me to other events locally on weekends or evenings. I have not used the integrated system but I have traveled on many occasions on the subway in Toronto right along with regular passengers. I have always found this daunting. In no particular order I found people annoyed by:

my very presence

the space my chair takes

my very presence

waiting for me to get on or off

my very presence

needed to use the disabled spaces they were sitting in

I have found myself, on more than one occasion feeling unsafe because of the mood of the passengers around me, particularly during rush hours where people wouldn't let me on the system at all. I only managed once to get on and that was with the assistance, firm assistance, of TTC staff.

So, I asked the transit people here, the ones who work with people with disabilities wanting to access services, a question. "Given the research that people with disabilities living in the community and accessing community resources are likely to be victims of violence, intolerance or social disapproval, what have you done to keep us safe on your system. I know that you will have trained drivers, I'm not worried about the drivers, I'm worried about my safety in simply getting on and off the bus.

Now I think this is a legitimate question that people with disabilities need to be asking frequently. The research is pretty solid, we aren't often greeted with welcome. So it's important to know when entering a new environment that claims accessibility, or when you are about to start receiving service from a new organization, to ask, "What have you done to keep me safe within this new environment or with the staff I will be dealing with?"

They should be able to answer the question.

It's a simple one.

Do you know what they said to me, after suggesting I ride, alone, and vulnerable, on two buses and transfer between those two buses without any assistance?

"You'll find that bullying and that kind of behaviour is more of a Toronto problem. It doesn't happen up here."

WHAT!!! THAT'S AN ANSWER????

I told her that I'd already been to the mall and been the subject of stares and other forms of social discrimination.

I was told then that I'd need to speak to a supervisor.

I haven't.

I will but I haven't yet.

Why? Because I think I can already predict how the discussion will go.

My F**king Home

I love my new home.

There are a number of reasons I'm happy there but chief amongst them is the fact that, for the first time since becoming disabled, I am in an accessible apartment. The amount of freedom and independence that I've gained is immeasurable. I feel for the first time in 12 years that I can fully relax in my own home. There are no words to tell you what that feels like.

So ...

Understanding that, listen to this ...

A visitor to my home was commenting on the place. This visitor is non-disabled and is typically quite a polite person. In conversation about the rooms and the paint jobs and the artwork on the walls they said something like, "The only thing is that the bathroom is really quite institutional, you know, really medical."

I was thunderstruck.

All I said was that I liked it. No witty comeback, just a defensive, and slightly pathetic, statement.

Later, it angered me.

I'm tired of disabled lives being evaluated by non-disabled standards.

The person who made this remark has a home that I can't even fucking enter. It's completely and totally, and from every perspective, inaccessible. Yet they feel they can make a remark about something that makes my home HOME!

What does a non-disabled person even understand about the word 'institutional'? A word that justifiably sends shivers down the spine of those of us with disabilities. A word that has a history of hurt behind it. A word that has been used to subjugate and separate us. What do they know about what that means?

Why do non-disabled professionals get to tell people with disabilities about how our homes should look, how our lives should look, how our relationships should look?

Why do standards for our housing and our inclusion and our relationships get to be set by people 'understand' our disability when they clearly place rolling under standing?

I don't have an institutional bathroom.

I have a lovely accessible bathroom painted in the coolest shade of light green that you can imagine.

And if you don't like the bars around the toilet and the roll in shower or the stand assist or the cut out under the sink ... then mind your manners and shut the fuck up.

Basted Words

We were having brunch at the food court. Gay men can brunch anywhere. I had picked up my tempeh wrap and was taking my seat. One table over there was a guy, about 30, with Down Syndrome. His head was down and he was shaking it slowly.

Two tables on the other side were a husband, a wife and a family friend. They saw the fellow, head down, sadly shaking his head. And wow did they go to town on him:

how sad he must be to be Down Syndrome

how difficult things must be for him

how his parents must be such brave and special people

how lonely and desolate he looks and therefore how lonely and desolate his life must be

they called him a boy when they spoke of him, even though he was clearly a man

They were eating burgers but gorging on pity. And they were loving it, loving basting their words in prejudice and preconceptions.

Then, and this was magical, his wife returned from the bathroom. She saw him with his head down and shaking it. "What's wrong my honey?" she asked.

He looked up from the paper in his lap and said, "I don't think the Leafs have a chance again this year."

I couldn't help it.

I burst out laughing.

I glanced over at the table from which waves of pity had come. They looked confused. Really, really confused.

I love that kind of shit.

Really love it.

Me, My Legs and I

It's hard for me to write about my own relationship with my body. My body has been the subject of so many posts, but always as the object of other people's either revulsion or derision. I want to claim some space and some air time and in doing so I push aside:

what happened in the mall yesterday when I got off the elevator to the horrified expressions about my body by mother and daughter

what happened in the gym when, for the first time another member, one that I've not seen before, came out of the weight room, saw me exercising and burst into laughter

what happened that made me have Joe move to block the view of people openly gawking at me when I was waiting in line to make a purchase

It isn't easy to push these aside. They all call to be written about, but that's not what I want to write about. I want to write about me, and my relationship with my body. It is after all mine and it makes sense that I would have my own issues with where I live.

Many of you know that I've been exercising. Most of the work I've been doing is upper body work but I've been moving into, very limited, lower body work. I discovered I can 'march in place' while sitting in the wheelchair. I can do leg lifts and foot circles. I can, when standing, lean against the wall and do some standing leg exercises. I have to be careful because falling is definitely an option with these ones. So, I am exercising as much of me as I can.

About a week or two ago I encountered a big ramp, long, steep and, I thought, impassible. Then without thinking I turned around and placed my back wheels at the base of the ramp. I lifted the foot pedals to give myself room. Then using my legs and my arms I started. Pushing with my legs, pulling with my arms, I quickly, really quickly, made the top of the ramp. I wasn't even breathing hard.

Later when thinking about it, I discounted the achievement. I had done it with the help of my legs, it didn't count. I used the same technique in a couple of other places and again, I dismissed these as non-accomplishments, I'd used my legs. In my mind, and I was set on this, it's only the arms that matter.

It was then I realized that I was angry at my legs.

I remember the exact moment my legs failed me. I remember having to leave 3/4 the way through a day long presentation because I'd lost the use of my legs. I remember getting out of bed to go to the bathroom and falling down, knocking furniture every which way. I remember being so frightened when I woke up in intensive care. I remember all of that. My legs gave out. My life changed.

Please do not read this and interpret it into the typical disability narrative, I am happy with who I am as a disabled person, I'm even grateful for this journey and what it's meant to me, but standing one day, falling the next takes some adjustment.

In all the busyness of hospitalization and the introduction of the wheelchair and the getting home and reestablishing new routines, I never had much time to think about my legs and their failure and the impact of that failure on my life. And because I didn't, I've discovered a kind of residual anger at my legs. I kind of developed an 'okay, you aren't going to work, I'll show you I don't need you' attitude. It's an attitude that served me well, but it's an attitude that needs both examination and resolution.

My legs don't do what they originally did. But they can add to my mobility, and that's okay. It counts. It matters. Getting up a long, steep, ramp, is getting up a long, steep, ramp. That's all. It doesn't matter how it's done, it's still my body doing it, it's still my independent action that got me to the top. It's still me doing it.

So, I'm working to make peace with my legs.

To accept them as possible solutions to impassible terrain.

And to have it matter to me that my arms and my legs can work together to get me further.

I have legs.

They help me sometimes.

I need to get over that.

A Visit From a Dog

We have a dog visiting us today. He's a big one, about a year old, and is a combination of coiled muscle and impulse decisions. It's nice to have a dog in the house. It's nice to be reminded of a dog's ability to check out the environment and the people in the environment. Here's what I noticed.

1) He immediately set about finding out what the boundaries were. Where he could go and not go. What doors he could push open and which remained closed. Who he could jump up on and who he couldn't. It's important for a dog to know these things. He was an expert and had it all sussed out within about 5 minutes.

2) He then had to determine where his stuff was, the things that gave him pleasure and comfort in equal measure. He found the ball. He found his stuffy toy. He found his bedroom. You could see him relax knowing that what was important to him was here.

3) Then he set about measuring up the people around him, especially the two new people. He cared little for any of the superficial things. He wanted to know who was the easiest touch for a treat. Who was a sucker for his eyes, when he made them look sad. Who was willing to put things down to pet him. Who took instruction well about where he wanted to be scratched. Who had a safe touch. What had a safe tone. Who would care for his needs - get him outside and let him back in. He had that done quickly too. Smart dog.

The dog entered our home with no prejudice. He simply wanted to know who we were and how safe the place was. He did that by our behaviour. What we looked like. Who could walk. Who was fat. Who was bald. Who had the most refined nose. None of these things matter.

He looked at what we did.

He looked at how we responded.

Then he determined if this was a safe place to be.

Funnily enough, as a disabled person, I realize, I need to do exactly the same thing.
Talk is talk. Words can be beautiful. Mission statements can be read with the national anthem playing.

Beauty is just beauty and it doesn't mean anything else. People act like it does, but it doesn't.

It's what we do that mattered.

Now excuse me, he's here and looking at me with big eyes ... he knows I'm the treat guy. Can't let him down.

What We Both Saw

Zero tolerance for bullying! I hear that so often, and when I hear it, it is said with determination and there is fire in the eyes of the speaker. They say it. They believe it when it's being said and they know it's the right thing to say.

But that's the problem with all of this isn't it?

Words.

Sometimes they have meaning.

Sometimes they don't.

I was watching kids playing in a pool, it was a summer camp activity. I knew this because there were camp staff with them in the pool. I could easily identify them as camp staff because they all wore singlets with the words 'camp staff' on them.

Right in front of me I saw a bully standing under a devise that, when full, dumped a blast of water on whoever was below. He was centered directly under the dump bucket and was taking, to his delight, the full impact of the water. There were kids around him, pushed in close, who were taking the left over splash. The brave ones tried to get closer and the bully elbowed them hard and they moved back. This was his and he was keeping it.

This was seen.

I clocked three of the camp counselors notice this.

But nothing happened. They made no move. Two shook their head in disapproval, but that was the extent of their action.

But there was a boy, with a disability, who was in the pool, several feel away, who saw what I saw. A bully using force and entitlement to take from other kids the experience of a direct blast of fun. His elbows and his attitude were his weapons, his expectations of inaction by the staff was an integral part of his strategy for domination of that area of the pool. The kid with a disability saw all this.

He was accompanied by a staff. He got their attention and he pointed. It looked, from my viewpoint on the other side of the glass, that he didn't use words to communicate. He pointed, they saw and looked away, he pointed again, and they looked away again. He was getting frustrated and it showed.

"Tell the staff,""Tell someone in a position of authority" is one of the strategies we teach children, people with disabilities, and each other. It's a common sense strategy. If you see or experience bullying, or violence, or abuse, report it.

But bullies, and aggressors, and abusers, know that 'zero tolerance' often means 'zero acknowledgement' that people will simply 'not see' what they 'don't tolerate.'

That child, the one with the disability, was the one kid in the pool that did what needed to be done. He clearly took responsibility and because he did he SAW what was happening and he took action.

But that's where the action stopped.

Then, the whistle blew and the kids clamoured out of the pool.

I saw the bully standing, smiling from the fun he had. I'm not sure if that fun was the water bucket or the fact that he had it to himself.

He won.

Everyone else lost.

And he knew it.

Zero tolerance doesn't exist if there is zero determination and willful, purposeful, refusal to see what won't be tolerated.

And maybe we need a new strategy.

Maybe we should be promising something different, not 'zero tolerance for bullying' but 'zero tolerance for inaction' to the issue of bullying, abuse and social violence.

That's what I'd like to see.

That's what I'd like to experience.

That's what may make the world a little bit safer.

A Story Unprompted

My father joined the Canadian Forces when he was 19 and served overseas during WWII. This was something he never really talked about with me, even though, as you can imagine, I tried. I was interested in where he'd been and what his experiences were and he was interested in not talking about it. I understand many vets were reluctant to tell their stories and my father was one of their number.

During his time in the hospital he did talk a little more about being in the war. I had brought up the movie "Dunkirk" and he said that it was good for people to remember. Then he talked a little more about his experiences, not much but more.

I want here, in this last post I'm going to write about my Dad, for now, I want to remember a brief conversation I had with Dad about the war when I was just becoming a teenager.

First though, let me say that I never heard my father utter a racial epithet. I'm not saying he never did, I don't know that, I was a boy and know only how he spoke around children, I no nothing of how he spoke around other men, but I never heard him. This is noteworthy because, of course, I heard those words elsewhere and I heard them used unchallenged. It was somewhere around 1964 when I was about twelve that I had a conversation with Dad that I have always remembered and in a sense, it has guided me.

We were speaking about a report on television about racism. Out of the blue, and without any of my persistent questioning, Dad told me a story. He said that when he enlisted he expected to find camaraderie amongst his fellow recruits. He did. This was a war with Germany. His was a German last name. He found himself expelled from the social life of his unit. There was another fellow experiencing the same thing. A black man, also Canadian, also enlisted, also excluded. They hung around with each other at first by chance and necessity and then by choice. They liked each other. But my dad notice that while he was socially excluded, his friend experienced exclusion accompanied by force. Dad never felt endangered, but he knew that his friend did. He hated that.

My dad said that the saw first hand what prejudice did to people. He had tasted it but he'd seen the full measure of its cruelty inflicted on someone he cared about. 

That was it.

I wanted more.

I didn't get more. I don't know what happened to this man. I don't know what his name was. I don't know if he made it through the war.

I did know, though, that war changed my father. Both on the battlefield and in the barracks my father got a glimpse of the various kinds of horrors that humans do to humans.

I'm not sure why he told me that story that day.

But it mattered to me.

Then.

And now. 

My Father's DNA

I don't know why I found it so hard to ask, but I did. It took me several weeks, or maybe even months, to make the call. But I did.

A little over a year ago I joined a big study done through one of the major hospitals in the city of Toronto. It was a study involving what doctors lovingly call 'morbid obesity' and I had been approached to be part of that study. The study consisted of filling in a lot of questionnaires about life and weight, some of the questions being quite personal.It also involved an interview and a blood test.

The people running the study, well I guess I should say the nurse who is my contact to the study, is a truly kind individual who has never treated me with anything but real respect. She is easy to talk to and takes a genuine interest in me as a person. A while ago I was informed that they had found something in my DNA that they were zoning in on as it seemed to be present in others like me as well. So I was asked to consider asking my family to participate in the study by providing DNA samples.

Yikes.

That's a really personal request to make of someone.

And, it would involve me making myself quite vulnerable in talking about the study, about my weight and about the process of gathering DNA.

I finally made three calls.

I called my mother first. I explained to her the study, I explained what she would have to do, I explained why I thought it was important.

She agreed. Quickly and absolutely.

I called my father next. He was in the hospital and I could hear the sounds of the daily goings on in the ward behind him as we talked. I told him all he had to do was spit in a tube and that was the end of it. He said, "I guess I'll spit anywhere you want me to." That was that.

Then I called my brother. I left him for last after informing the nurse that my parents had said yes and did they want my brother. They did, I called. He like the others agreed quickly and easily.

As my father grew more ill, my brother called and said, "If you want Dad's DNA sample you better have them send the equipment quickly. I wrote the nurse and email, gave an address and encouraged her to send the DNA kit quickly.

It was clear, to all of us, that Dad would not wait for the mail to deliver the parcel with the materials that were needed for the study.

The night before he died, my brother, his wife and my mother had stayed at the hospital in the evening leaving the next morning. My brother sensing that he should go back, did. An hour before my father died, they discussed the DNA test and how much it seemed to mean to me.

They called the nurse and explained the situation. They asked if it would be possible for them to collect a sample of my father's DNA for the study. The nurses at Campbell River Hospital have been incredibly kind and compassionate through my father's long stay and they didn't blink an eye at the request. The nurse hurried out and then came back and took the sample.

It was done.

Minutes later my father died.

This act of generosity on the part of my brother and my father, in the minutes before my father's death astounds me.

Astounds me.

My Father's Slippers

When I was a boy. An immature boy. I had no idea of what real adult love was like. And I had no idea of how my own cruelty would stay with me, permastamped in my memory.

This is a story of the boy I was.

And the man that my father was.

It was Christmas. I had bought, probably with my mother's assistance, my father a pair of slippers. I am convinced that, if not for slippers, fathers may never get a gift. Anyways, they were wrapped and put under the tree. On Christmas morning my brother and I woke to a bounteous harvest of presents under the boughs of the tree.

I remember little of the gifts that I got, or the dinner that we ate, or the activities of the day. I remember only one scene. It was of my father opening my gift and putting on the slippers. I was delighted by the fact that they fit perfectly. My father expressed how he'd never had a pair of slippers fit quite so well.

I was chuffed.

I noticed when Dad got up to go to the kitchen that it looked like the slippers were much too tight. When he sat down, he took them off and discovered that there was paper tucked into the toe of each slipper. He pulled them out and I laughed at him. I thought him silly. I thought him dumb. How could he have not noticed that the paper was in the slippers. I acted like an arrogant, foolish, bully. My dad said nothing of my behaviour, but I remember the look in his eyes when he looked from the slipper to me.

It was only later that I realized that my father had pretended a good fit to please me. He wanted me to feel happy about the gift that I gave him. He wanted me to have a good Christmas and so he put up with a bad fit, he was acting gracious and kind.

And I mocked him.

As an adult I understand how, sometimes the gift we want to give to others is our appreciation, our gratitude, even if the fit is a bit tight.

As an adult I understand why my father did what he did.

And because I understand that, I understand how mean and stupid I was in response to my father.

But I learned.

The pain I feel for having been that boy at that moment has taught me something.

About grace.

About kindness.

About how to be a good man.

The Gift

I remember the exact moment that the picture was taken. Joe and I had been visiting my father in the hospital and just before we were leaving, I asked if I could have a picture taken with him. He agreed and that set about the monumental task of moving things around, in a tight space, so that I could get myself and my wheelchair into position. So, while that happens, let me give you some back story.

My father, when he died, was 93 years old. Joe and I have been together for 48 years. That means when we got together in 1969, a few days before the Stonewall riots, my father was 45 years old. They were different times. In our corner of the world the preferred slur used about gay men was 'fucking gear boxes,' and, though it may not seem it from reading the words, they were always spoken with implied violence.

It was a time of hiding. The idea and concept of 'coming out' was foreign. But there Joe and I were, barely 17 years old and living, hiding, in plain sight. We denied any accusations regarding our relationship. Good friends and buddies we were. Our first year together we both decided not to go home for Christmas, to break away early, to establish ourselves both as independent and as a couple. It was a rough holiday with a lot of people very angry at us. We had a lovely dinner.

So, in my home, there was simply silence about Joe, about our relationship. The silence was absolute. I couldn't live with so much silence and with so much of my life being hidden away, so I went home less and less often. Other things played into that but I need not go into that here.

I told my parents when Joe and I got married a couple years back and the response was that they thought we already had been married. I said that I wouldn't have gotten married without their knowledge. The silence had finally and forever, been broken.

When Joe and I visited my father in the hospital Dad treated Joe with respect and ensured that he was always included in the conversation. It may have been the first time that I saw Dad fully comfortable with Joe and it felt good. Then, I asked for the picture.

I'm finally beside the bed and I lean over. I place my hand on the bed for support and was surprised to the point of shock that my father took my hand. He doesn't do that. Joe, never good with electronics, was struggling to take a photo. After a few desperate tries I could see his growing frustration. My hand was holding my father's hand the whole time and he made no effort to pull away while Joe fiddled with the phone. I then said, "Joe you'd better take the picture quickly or people with think we're on a date here."

My father cracked up. He laughed loudly and Joe snapped the picture.

I will remember that photo because it's of my father holding my hand and laughing at a gay joke.

Many people have commented on how happy my father looks in the picture. I think he was happy. Not just because of the joke, but because, for all his earlier misgivings, he knew that I was loved and cared for and he need not worry about me and my future. 

That was his gift to me and mine to him.

Dad

Photo Description: I am sitting beside my father in his hospital bed. He is holding my hand and we both are smiling.

My father died yesterday morning.

I went to visit him when he fell really ill a bit ago. During our visit we had a chance to talk and there was something, quite private, that I wanted to say to him. I don't think that we know what to thank our parents for until we are well into adulthood, I wanted to do that, and I did. That felt like an accomplishment, but it also started a series of conversations, over the phone with him. Conversations that I will now miss dreadfully.

Over the next few days I plan on writing a bit about who my dad was, or at least who he was to me, as his youngest child. But right now, I concentrating on learning how to live in a world without having a 'dad'. He lived so long that I almost believed that he's always be there.

A Moment

I was pushing towards the washroom, rushing, when I saw a young mom with her son. He was looking up at her talking. Then he looked and saw me. He came to a dead stop. His finger went up, pointing directly at me. He called for his mother to look.

She looked down and saw him, thunderstruck, then saw me.

"Yes, honey, he's different than you, she said, "He's wearing a green shirt and you're wearing a blue one."

He looked at her with a "What The Fruit Loops Is Wrong With You" look on his face.

She, however, just continued on, him in tow.

A Boy, A Dragon, And Magic

He was still young enough to be sitting is a car seat. He probably believes in dragons, and fairies and magic. He is the age where the world should be full of wonders, and fun and, unaware of the work of his parents to make it so, safety.

But the world isn't safe.

And he knows it.

Already.

He is standing outside the car parked outside the movie theatre. He is excitedly talking about the movie. But then he notices being noticed, being stared at, being singled out. He stops talking, he buries his face in his father's pant leg. Dad reaches down and picks him up. Mother quickly looks around and spots those who are staring. She looks a them with disgust. They turn away. Unashamed. Uncaring.

 I don't understand.

Different is just different.

Why the need for cruelty?

And no, it wasn't 'noticing' that happened. Noticing is an involuntary recognition of something or someone. I notice when people are tall, or red headed, or fit. So I of course expect people to notice that I am fat, or bald, or a wheelchair user. But notice turns away without judgement. It registers without evaluating. Noticing eyes don't linger, don't attack. Staring is a choice. An active choice. Seeing a little boy with Down Syndrome get out of a car in a movie theatre parking lot is one thing, staring at him is another. It may feed your selfish sense of superiority or pity or gratitude to your God. But it poisons the world for him,

A child who sits in a car seat.

A child who believes in dragons.

A child for whom magic will die too soon.

I push my chair past their car and the little boy notices me. He points, then smiles, then waves. I keep moving but wave back. I smile. I give him a wink. He laughs. His mom looks to me. I don't think she noticed at that moment anything much about me, but her eyes said 'thanks.'

They shouldn't need to.

They shouldn't need to.

They shouldn't need to.

Behind me

The argument happened behind me.

I was rolling up a ramp and paused to center myself and push over the door sill. At that moment a couple came out of the building and seeing me pause, the woman asked if I needed help. I said, "No, thanks but I'm good." She nodded and kept walking and I pushed up and over the sill and was continuing in. I heard this behind me.

"No," she said, "he doesn't need any help." I don't know because I didn't see but I presume her husband was going to grab the back of my chair to 'help' me.

"No, don't," she said insistent.

"I'm just going to help him."

"I asked and he said 'no'" she said.

"He probably didn't want help from a woman." he said.

"HE SAID NO!" she said loudly, angrily.

"Alright, alright," he said, "no reason to get upset I just wanted to help the guy."

"He said 'no' you were right behind me, you heard him, he said 'no.'

"Yeah, yeah, 'No means no,' I get it."

"No, no you don't," she said, crying.

They went through the door I went into the lobby, and it was over.

But let's review.

'No means no."

Review over.

What's Wrong With This Picture

I went to the movies yesterday. We rushed in, headed to the washroom, and then took our seats. Something felt wrong about the whole experience. I couldn't place it but something was missing. I pushed that aside because we were at a movie, Wonder Woman, that we had wanted to see a long time. Now was the time and I wanted to enjoy it.

And I did.

(Except did the villain have to be a bitter woman with facial differences? Talk about a group of people stereotyped as scary and evil. Shit.)

Then afterwards we talked to a few people about the movie and left. Again, going through the theatre I felt odd. Something wasn't right. Something was missing.

Once home I realized that there were no people with disabilities working in the theatre. Not one in a visible role. In my local theatre several people with disabilities hold jobs, a proud young man with Down Syndrome does whatever they do when they come into a theatre and look at something on the wall and leaves. An equally proud woman who does several things, including ripping tickets and directing traffic. I am used to seeing a diverse work force in the theatre.

The theatre I went to clearly had a different hiring policy.

And the sad thing is that those that go to that theatre to watch movies won't know what's not there because it isn't there. People are used to work forces that aren't inclusive. Because of that they may never ask why people with disabilities aren't given the chance for jobs there. They can't protest when they accept prejudice and discrimination as the norm.

Missing and disappeared - that never happens by accident.

NUTS!

Just before we crossed the border we stopped at the Duty Free. The primary reason for the stop was that I had to pee. We pulled in and I got out and then rolled down a hill, the enjoyment of that was tempered by the knowledge that I'd have to go back up, and then entered the store. We found the bathroom at the furthest reaches of the store and then Joe went shopping for a suitcase (a 24 case of beer for those of you who may not know Canadian idioms) and I wandered around.

They had an amazing display of liquour bottles and I was looking at some of the fancier bottles. I may not drink but I can still look at the bottles and recognize some brilliant designs. I was browsing. Then, feeling watched I discovered that I was being watched. A couple, a few years younger than me, were paused with their cart looking at me disapprovingly. 

I looked up at them and they weren't at all embarrassed to be caught out watching a random stranger in a public place. In fact they seemed relieved, now they could get their message to me. He pointed at the bottles while she wagged her finger at me. WAGGED HER FINGER. Like they had the power and the right to tell me that I should not be buying booze. Like they were fulfilling a public duty to keep cripples from intoxicating drink.

It made me want to wrap my lips around a big bottle of Knob Creek and take a swig. 

I didn't but WTF.

I joined up with Joe and then went in search of peanuts. I wondered if they'd approve. All I could find was maple syrup flavoured peanuts, and if there are Canadian Nuts, they aren't maple flavoured.

The constant monitoring, the constant need of some non disabled people to staff our freedom is remarkable. 

I went nutless into the car park, partly because they didn't have want I wanted, plain old salted ones, and partly because instead of doing anything at the finger wag I just turned and left. They probably felt that they had successful.

Part of me hopes they they drive away with maple nuts stuck to the roof of their mouths.

I mean, shit.

Disengage

Sometimes it just seems easier to disengage. I notice, at times, when I'm in a group of non disabled people who are actively not noticing my difference and the only way they can do that is by not noticing me, it's a real fight to speak up, to be heard and to be taken seriously. It can be exhausting being both highly visible and completely invisible at the same time. And sometimes, it's just easier to sit back in my chair and to disengage. Socially, for me, disability means disappeared an awful lot of the time.

I do have energy and I do have voice. But it takes extra energy and an almost strident voice just to make a statement that is incorporated into the broader conversation. Most people I'm sure have to work to make their voices heard but there is a 'standing supremacy' that leads to the privilege to dismiss people like me, with voices closer to the ground.

This doesn't happen to me at work.

It doesn't happen to me where my role is known and valued.

I'm speaking of ordinary social situations.

I don't expect people to defer to me, if that's what you are thinking. My disability doesn't make me more important than anyone else and it sure as hell doesn't make me less important. Sometimes I just want to be part of, rather that actively, purposely, intentionally, included. I don't want it to be 'work' to hear my voice and I don't want to work harder than anyone else for my words to have impact.

Sometimes it just seems easier to disengage.

We are, or it may be just my perception, not made welcome in public spaces. There are barriers to entry. Stairs to building is one kind of barrier to entry. Running the "gauntlet of stares" is another kind of barrier. But the barrier that seems most daunting is an unramped entry to social existance.

I Never Saw Her

She didn't stand out.

I didn't even notice her. I'm a people watcher, I'm curious, and a bit nosy, and I didn't even notice her there. I didn't notice him either. They were just part of the scenery, just part of the crowd.

That meant something that mattered.

She had an intellectual disability, though her disability would be invisible to others, and she was being supported by staff in a very busy mall. She may not look like she needs much support, but she does. It may seem that going to the mall might have not have been a really big deal for her, but it was.

She looked happy.

She looked successful.

I know this because they came into my consciousness when she and her staff stopped to say hello. I saw her smile and her sense of confidence and accomplishment. I saw that she had a shopping bag and he didn't. I saw that she enjoyed being out without being "out". I saw a staff who  managed to support and not diminish, to provide help without self aggrandizement, to be there for when she needed without being there and 'performing staff.'

She didn't stand out.

After we all talked and it was time for them to go. She turned and led the way. She did it like she didn't expect to be called back, she didn't expect to be corrected, she didn't expect that her leadership to be challenged. He quickly caught up to her and then they were gone.

She didn't stand out.

But he did. Not to anyone at the mall but as a role model to every staff who goes out, every staff who supports someone in the community, to every staff wanting to know what excellence looks like.

The hierarchy so often on display when we are in public with those we serve, or those we parent, can be the first finger to point difference and disability and diminished.  The hierarchy, well managed, can demonstrate, respect and value and worth.

She didn't stand out.

His power didn't stand out.

She led because she knew, that the support she needed, would follow.