Tuesday, December 31, 2013

Wow, He Said

I told someone I was gay the other day.

Out of the blue.

Bang! There I was saying, "You know I'm gay, right?"

His face registered shock, "You?"

"Yes, me."

I don't do this often because I don't have to - pretty much everyone knows. So it felt odd, pushing the closet door open and letting it bang shut after me again. This time, though, I came out strategically. I was just in conversation with a man with Down Syndrome who was talking with me, struggling with the fact that he was attracted to, and had kissed, another man. He thought he was in love. He was aching with pain, it was all wrong, he was dirty and sinful.

I couldn't bear watching him.

I couldn't bear remembering the pain of feeling shamed for feeling loved.

I couldn't bear watching him hurt.

So, I said, "You know I'm gay, right?"

After he expressed his shock, I asked him if he had noticed Joe - the man who was often with me. He said, immediately grasping, "Joe is gay too?" I told him that we were both gay, we both lived together, we both loved each other. I did this in the calmest most matter of fact voice that I could muster. I wanted it to be presented as if it was just another simple fact, not some big revelation.

"Wow," he said.

There was a long pause as he thought. Then he said, "I kissed a man." I nodded, knowing he wasn't done. "He's my boyfriend." His eyes flicked to mine looking for something. I said, "Joe is my boyfriend too. I kiss him too."

"Wow," he said.

We then chatted a bit and he learned that I lived a regular life, in a regular apartment and did regular things. I just did them with another man. He asked not a single question about sex, he just wanted to know about the pattern of our lives - did we have friends; did our families mind; were we happy. I asked the questions simply and honestly.

When we were done, his questions answered, I sat there and thought about this conversation and about how much I would have loved to have had it when I was a young man, I wished for such a conversation. I felt an honour, and a privilege to be in a position where I could initiate the conversation that I needed then, now. Then, as he was getting up to go he turned to me and shook his head in amazement.

"Wow," he said.

Monday, December 30, 2013

The Fall

I was being assisted into the office when I fell.

I don't fall often.

I know the danger is always there, my balance being what it is.

But I fell.

Mid-fall, I felt two strong hands catch me. I felt the fall slow down. As quickly as I could I began to move my feet under me. Those hands held me in place, held my weight, held my fear, while I grabbed towards the wheelchair.

My feet.

My hands.

Found purchase.

I slammed into the side of my chair.

But I didn't hit the floor.

The driver, who'd accompanied me through the door, picked up one of my shoes that had fallen off and, though offered assistance for it to be put back on, I had him put it in the bag.

He wished me a happy new year that he just guaranteed that I'll have.

I thanked him.

It took twenty minutes for the shaking to stop.

Twenty minutes for the fear to diminish.

I fell.

But I didn't hit the ground.

May it ever be always for everyone.

Sunday, December 29, 2013

Answering the Impossible Question - Part One

In a heated discussion several weeks ago, when I was trying to discuss access to someone who thought that a store with only one step was accessible, this question was shouted at me: Just what do you disabled people want anyways?

I figure when I stop being 'Dave' or stop being 'the other person in the conversation' and become 'you people' the chat is pretty much over.

Funny, I can feel some of you trembling right now, but not to worry I'm NOT going to try and write anything that attempts to answer the question "WHAT DO DISABLED PEOPLE WANT?" I am aware of the fact, and am reminded from time to time, that I am NOT a spokesperson for 'people with disabilities' or 'people who are gay' or 'people who are fat'. It's impossible for anyone to speak to the collective experiences of a 'people,' I resolutely remain simply a person who is each of those things who writes in a personal, not collective, voice. I'm going to give you some examples of what I want as a person with a disability - complete with examples. This is going to be a five part series. Here are the first four things I (that's me, Dave Hingsburger, speaking in my own voice about my own perspective) would like:

Yesterday we went to the Royal Ontario Museum to see several exhibits, one of which was the Wildlife Photographer of the Year exhibit. When we showed our membership upon entering the museum I asked the young woman where we'd find the exhibit. She gave me directions. Now there are several different pathways to get to the exhibit but the directions she gave me put me on the one accessible pathway. She didn't say, "Oh wheelchairs go ..." She just answered my question with information that would work for me as a wheelchair user.

1) I would like to be able to ask for information and get information that is pertinent to me as a person who uses a wheelchair. It's astonishing how often I ask for information and am given generic information that works for everyone but me. I've been sent to stairwells that I'd tumble down and die if I tired to navigate. I've been sent to washrooms that are not accessible. I've been directed to places where there is simply no possible entrance.

Getting on the elevator I got in a politeness tussle with a man who insisted that I get on first even when I said, "We'll all only fit if I get on last." Then he said, "I'll take the next one." I said, "There's no need there's lots of room, it's just that you need to get on first." Finally he got on and then when I backed in he said, "Oh, I see why you wanted me to get on first.

2) I would like to be seen as an expert in my own disability needs, my own space needs. If I say, you need to get on first, or could you open that door, not this door, I'd rather not have an argument or discussion of any kind about it.

While on the elevator another fellow, who had heard me say that we were going to the Wildlife exhibit began to chat with me about the exhibit. He was enthused about it, was going back a third time, talked about how spectacular it was. Asked what my interest was in seeing it. Listened to my answer. It was a delightful chat between two enthusiastic museum goers. He got off first, as I'd asked him to, and as he left he waved a cheery farewell as he spirited off to the exhibit.

3) Chatting about something held in common, person to person, that doesn't devolve into a discussion of my disability in any way - why that's just lovely.

In the exhibit, which we got to moments after it opened - we do this to avoid crowds. There were about 15 others there looking at the spectacular display. Really spectacular display. Within about ten minutes we'd figured out each other's pattern of viewing pictures and accommodated everyone for pace and space. I thanked others, others thanked me, for consideration.

4) Civility and common courtesy comes, at least in part, from a willingness to adapt to those around you. It was odd, to the point of being shocking, for others to recognize that while they were adapting for me, I was also adapting for them. Negotiating space and pace is something that is never done for one person in a crowd - although the way people talk about it you'd think that when they do it for me, it's adaption, and when they do it for each other it's not.

Saturday, December 28, 2013

"Don We" Indeed

Yesterday, late afternoon, we decided to out to the pub with a friend. I had cautioned everyone that, though we go there fairly regularly, we hadn't been in months and I had no idea if, considering Christmas decorations, I'd be able to get in. It isn't a big place so I could imagine one tree taking out complete access. We came up the sidewalk and some of the men in the window, men who I only know as nodding acquaintances, saw me coming. Action started before we reached the entrance.

They had put a small table in the vestibule to create space for the tree, beside the table was a snow shovel and a bucket of sand and gravel mix. No way I could get in. But Joe and Mike and the other pulled together and in less than a couple of minutes I had entrance. I got in and turned to see the bar packed full. Every table was taken. Someone I knew from long ago suggested we pull up beside the buffet table and use the corner of his table. Within seconds we were in space. It took about five minutes for me to get over the sensation that I was in the way for people needed to get to the buffet table or the toilets which were down the long hallway behind me. But I was in.

We had visited David's Tea and I had two cups of hot tea on the table in front of me. One a lovely sencha tea and the other a milky oolong. Beer was purchased for everywhere else and soon we disappeared into the atmosphere of the place just chatting and laughing and telling stories that were bigger than life but smaller than lies. It was fun. I hadn't noticed that the bar had grown even fuller in the time we were there.

This is a place where we tend to visit earlier in the afternoon when it is much less than full, I looked at the way to the door, full of people chatting. It's a bar where the primary customer base is, like Joe and I, gay men of a particular age. So we started, as soon as the guys saw me coming they were off their chairs and moving things around, creating an exit that we easy to make. It was kind of the gay bar version of the parting of the red sea. Everyone wished upon us a happy new year, and we wished it back. I got to the vestibule which was hung with bamboo curtains to help keep out the cold. I'd have to get through those, and turn an immediate and sharp left to then get out the main doors. I had two men holding curtains, another one holding the door and another one asking people to wait while I got outside.

I waved 'thanks' and got a myriad of voices, some slightly slurred, wishing me a good evening.

It was awesome.

Really awesome.

It was my 61th Christmas  on this earth and I finally understand why everyone is asked to don gay apparrel.

Friday, December 27, 2013

At The Movies

Yesterday I spoke with a manager about changes that have been made at the theatre he oversees.

Accessible space has been lost.

Easy access is gone.

They gave me one elevator to get upstairs.

And took away the space to get to it.

They've blocked the way with a snake line of walking people standing getting tickets. They wait impatiently, wanting to get to their leisure. I see them when we arrive and start praying that the movie I am seeing is playing on the first floor.

My prayer.

Like many of my prayers for access.

Is not answered.

I get ready to start begging strangers for space. They will have to back up, or step aside, or wait a moment. I have learned that this is too much to ask for. I have learned that little gifts of civility are saved for others more deserving than me. I feel their eyes weigh me. I see their faces judge me. I hear tiny whispers that come from minds shouting - diagnoses and assumptions - and each whisper sounds like:

lazy

slothful

ugly

But they move because I have learned to ask politely and proceed as if the answer is or will be 'yes'. Some cede space, allowing me to pass because they see the quandary I am in, they see the elevator, they see the lineup that blocks it, and because of those things they move quickly and willingly, some even smile letting me know they get it. Others cede space not seeing why they should, they don't smile, the move as if their limbs weigh more than they think I do, they back up as if they are an army retreating, as if they are losing something that's rightfully theirs.

I make the elevator but I am drenched in sweat.

I sit cold watching a movie that only one part of my brain can comprehend. There's too much noise. Noise raised by the part of my brain that worries about getting out. About being boxed in. About never getting home. Home will be dependant on the mood of other people.

I see him just as we are about the exit.

The manager.

I roll up to him and ask if I can talk about accessibility.

He sighs.

SIGHS.

As if this is a conversation that he's had before and doesn't want to have again. As if I am taking up part of his day with trivial complaints.

But I tell him.

About how the new layout makes me a beggar.

About how I have to plead and suffer through a gauntlet of prejudice.

About how once access was free. How those who have so much were given the only thing I needed - a little space.

He talks to me about space, and configurations and tells me why things can't change. He didn't even spend a moment thinking about how it might be made different, needs to be made different.

I told him that the conversation has left me hopeless.

Hopeless.

Bereft of hope.

He sighs again and tells me that he'll bring it up at a managers meeting. He looks to me for gratitude and finds instead my retreating back.

Blog Announcement

I will be on 'The Confessional' a CBC Radio one program at noon here in the eastern time zone (I believe it is time delayed so that it's on at noon in the various provinces) ... I'm talking about institutionalization and freedom - in the context of a Christmas story.

You can 'live stream' the program here: http://www.cbc.ca/radio/ at noon EST on the 27th after that, it should be up on the Confessional website.

Thursday, December 26, 2013

Hard Decisions and Limited Options

One of the hardest decisions I ever was called to make, I made just the day before Christmas. We were picking up some final things we needed for Christmas dinner. After getting all we needed, we headed to the deli to pick up a few things for that night's dinner. We'd realized that we had focused so much on THAT dinner that we had forgotten that the was other meals we had to think about. As we picked out a few things, a woman came into the store sputtering and raging. Tis the season to be out of sorts so I didn't think much about it.

Until.

She headed towards the deli and I could hear her more clearly. She was cussing and swearing loudly and under her breath at the same time. Some of the things, that she said, which accompanied the cursing, led me to believe that this wasn't someone just having a rough day, but this was someone who was dealing with mental health issues. She got in line up behind me and continued cursing and exploding in anger, at the world not at any one in specific. I noticed the people at the deli notice her and they looked tense and concerned but not frightened.

Then.

She started talking about weapons. About taking a gun and shooting people.

The store was crowded. A panic would end up in several people being trampled. Our order was handed to us and we headed off towards the till. I spotted a manager. I made the decision. I rolled over to him and mentioned that there was a woman at the deli counter who was cussing and swearing and exploding into short bouts of anger, all that was fine, I said, but my concern was that she'd started talking about weapons. I wanted to explain more but the manager burst into action. It was like at the mention of the word 'weapon' he just vapourised.

On our way out of the store I told Joe that I'd found it a difficult decision to make, I didn't think she was a danger but I am not a psychic nor am I always well able to read the danger in situations. I thought it best. Maybe my actions will help her.

Joe said, grimly, "Yeah, and maybe the cops will shoot her."

That brought me up short.

Oh, my, god. The police haven't been showing a lot of cool or a lot of compassion for people with mental health concerns - several shootings have really brought that to the fore.

What have I done? I wondered.

I still don't know if I did the right thing.

Wednesday, December 25, 2013

The Chosen Day

What I love about Christmas is what it teaches me.

It teaches me that we, all of us, can take an ordinary day - just an ordinary day - and imbue it with meaning. We can create traditions around it, and we can celebrate it, and we can treat it as the most special, the most wonderful, the most exciting day of the year. We can choose to make something ordinary something special - just because we choose to. Some give this day a meaning from religious tradition, even though know one knows the precise day of the birth of Jesus - this day was chosen to be that day. Chosen. Selected. Some give this day meaning from a secular point of view as a day of family and a day when the hearts of children are uppermost in our minds. But no matter how it is seen, when I look out my window I see a grey day, with the sun giving little light and little warmth. It would be a day, any other time of year, that would be drab, featureless.

This teaches me that we have the power, collectively, to determine something special, something to be celebrated, just because we want to - and because we want to we call will it into being. We can tell stories about it, we can make it part of our faith, we can make it part of who we are as a society.

Would that this could be done again. Would that we could determine, collectively, that we will honour and we will celebrate the diversity of our families, the complexities of our communities, the differences between us all. Would it be that we had an intense desire for everyone to be at the table, everyone have a voice to share. Would it be that this was our collective desire.

Would it be that we could will it into being.

Would it be that we would want prejudices to fall away.

Would it be that we would make ourselves vulnerable to inclusiveness.

In a few moments children are going to be racing around me excited that it's Christmas morn, they won't notice that it's a grey and cold day. They will notice only that this day has been made special, they will participate in a day chosen to be special. May they be the ones to take this day, make it bigger, make it longer, stretch it into cloth that can be set upon the table of humanity, and may they cook the first feast of inclusively, the first feast where none are less, none are more and none live in want of warmth, of love and of belonging.


Tuesday, December 24, 2013

Hands

We got on the elevator with a woman we see about every now and then. She often stands on a corner, not far from where we live, asking passersby for change. We use debit so much that we often have little in the way of change, or cash of any kind, that we often can't give. When we do we do, she knows that. Seeing her inside was a bit of a surprise as we've never seen her where there isn't weather. The elevator we got on has three main destinations. The main floor where we entered, the basement where the grocery store we shop at lives and the second floor where there are courtrooms and lawyers and police and the people who are compelled to be there.

As we all waited together for the lift, I asked her to get on at the same time as Joe so I could then back on between them. She looked a bit nervous when I got on but I reassured her that I wouldn't back into her. She reached out and patted my shoulder saying, "No, I know you are a good driver." We pushed the button for the basement, she pushed the button for the second floor. These elevators are easily confused and sometimes go from floor to floor, in the right order, but without the doors opening. We went down first, then we started up, she said, "Are you following me?" We all laughed. Then it went down again and I asked her if she was stalking us and we all howled.

Several times when we were laughing she reached out and touched my shoulder.

I don't much like it when strangers touch me.

But this seemed different. I didn't mind it at all. I saw that the hand that touched me needed a good wash, I could see that they were hands that reached out, mostly, asking for charity. The skin on the hand was chapped from the cold and aged by poverty. Yet when she touched my shoulder I didn't react like I normally react when a stranger touches me. Perhaps it was because the context was one of friendly strangers on a bus that had broken down.

When we finally got off, it was on our floor first, we wished her well with the door opening on the second floor above. She patted my shoulder again and said that this was the first time she'd laughed this season. We all agreed that it was nice to have moments to pause and simply laugh and simply share times, even times with strangers.

I felt her touch on my shoulder as I drove away.

Normally when I'm touched by strangers I feel, somehow ... forgive me for simply stating what I feel ... used, or that something has been taken from me. My boundaries as a man feel violated somehow. Like I'm touched like a child, not an equal. Like I'm touched because I'm sitting and not standing. Like I'm touched with some kind of motive that I don't like.

But her touch was different.

It was a touch that seemed to want to give, not take.

A touch that wanted to enrich not impoverish.

And I imagine that hands that reach out to receive must have a desperate need to reach out to give. I felt as if those moments laughing on the elevator were a wonderful moment in day, in our whole season, and I consider that hand on my shoulder as we said goodbye and wished our Merry Christmases to be both a gift and a blessing.

The magic of the season begins ... 

Monday, December 23, 2013

Oh Come, Oh Come

Yesterday afternoon we went to a small Christmas event in our neighbourhood. It is a small event where carols are sung and people mix and mingle. This year, like last year, I saw a man with Down Syndrome attending the event along with his mother. She has aged a lot in the last year and is now using a manual chair, which he pushed with great care. I said hello to them as they passed by, we've chatted several times before, and they greeted both Joe and I warmly.

Shortly afterwards I heard an elderly woman say to her husband, "I don't know why she would bring him to something like this, it takes away from the spirit of the event." That sentiment is shocking on so many different levels. She made variations of the comment several times to several people as they arrived and before the singing started.

I seethed.

I stewed.

I silently screamed inside.

I looked at Joe, who'd heard all this, he looked back at me knowing what I was asking, he simply said, "Do it."

Rolling over I caught her eye, instantly I could tell she didn't think I belonged either. I rolled up and said, "I'm not going to make a scene, but I'm going to tell you that I think you are a bigot and a bully. You are a bigot because you can't see anything but stereotype - they are here together, if anything, he's bringing his mother. You are a bully because you are saying horrible things loudly enough for us all to hear. You are beating us with your prejudice and daring any of us to take you on. Let me tell you this, if I hear you say that kind of thing one more time, there will be a scene."

"Who do you think you ..."

"I know who I am and I know who you are. Trust me. There will be a scene if you say anything like that about him again. I will not stand by." I know my voice was cold because my intent seemed to freeze her expression.

It wasn't until this interaction that I realized that when people use hateful language aimed at someone else they are bullying that person and bullying everyone of kind heart that hears the words. We are being DARED, DARED to take them on. Our silence is both consent and agreement. Consent for hate to be spoken, and agreement with hateful thoughts.

It was hard to get back into the event. But, right up front, a carol or two in, they sang my favourite traditional carol ... it's one that, since childhood, brings me a sense of quiet and peace. So I sang it, with a voice that began shaking and ended strong.

Sunday, December 22, 2013

My Shopping Assistant

After swigging down a Booster Juice each we were all getting dressed to head home. As I was putting my coat on, I asked Ruby if she could come with me to help me finish my Christmas shopping, I had one store I had to go to before I was done. Sadie was busy planning with Joe to get the stuff ready for making my birthday cake and kept grinning at me about the 'big secret' about my cake. So we were off, Joe and Sadie to prepare cake makings and Ruby and I to finish my shopping.

Ruby is very comfortable around my wheelchairs, both my power chair and my manual. She, from a very young age, was able to put the legs on the manual and about a year ago demonstrated an amazing ability to judge space in relation to both the width and length of my chair. So I had chosen a shopping assistant wisely. I was going to a store that I shop at often. It's long and narrow. At the best of times I have to be careful. However, the staff there are astonishing. They are really helpful and they do everything they can to make the store accessible to me.

I had planned on just getting through the door and then asking a staff to help Ruby find what I wanted and I'd wait and watch as they did what they needed to do. The store was, predictably, really busy and this seemed to be the best solution. This wasn't what Ruby had in her mind. I got in and said to Ruby, "Let's wait until the clerk is free." She looked at me and said, "No, let's go look, there's lots of room." I didn't see the 'lots of room' but she had that 'determined' look that brooks no compromise. I headed into the store. Ruby was a little human plow as she went ahead and politely asked some of the shoppers to let me pass. They all seemed a bit started at the pleasant but firm request from a seven year old girl - and they all moved.

The movie we were looking for wasn't in the racks and I needed to turn around. This is always dicey because there is just exactly enough room which means I have to do it exactly right. I asked Ruby to watch to make sure that no one stepped into the way while I was turning. She stood there like Galileo assessing the heavens as she looked at the space around me and said, "lots of room." I heard her ask someone to wait for a second to me to turn, "Don't worry," she said, "he's fast."

I found a clerk and asked if they had a Christmas section for movies. She said they did and headed off leading us along to where the display was. We found the movie, then we picked up Joe's gift, then we were in the line up. I was a bit out of reach so I gave her the money and she paid. I watched her as she handled the money and dealt with the clerk. Her whole demeanour in the store had been one of quiet determination. She took the role of helping out seriously. She demonstrated a keen understanding of my right to shop, my right to space, and my right to a little bit of help. She's seven.

For some reason, maybe because everyone seems to have such trouble with the idea that we, as disabled people have the right to access and the right to participate and the right to a bit of help when necessary, that it was a really hard concept. Ruby is a bright child, no doubt, but she's also seven.

Seven. 

We left the store, she happy that she got to help out, and me, a little more wiser about the 'why' behind people's (purposeful) confusion about the word 'rights' in relationship to the word 'disability.'

Saturday, December 21, 2013

Thoughts on being 61

61 is a very big number.

When you are young, you never think you are going to get THAT old. I remember all of us in high school, all very young and very cool. We pictured ourselves so world weary. Hadn't worked a day in our lives, hadn't seen how the world really worked, but we knew all, knew everything, and felt above it. Were we all in for a shock.

Life is hard.

Loving is hard

Living is hard.

It takes work to make a life. They never told us that. Never even really hinted at it. Or, more probably, they yelled it to us bust we couldn't hear those messages. One of our gang kept saying she wanted to die before 40 - you can say those things when you still consider yourself immortal - and we all nodded in complete agreement.

I was luckier that most as Joe and I met in high school. 16 year old boys who would live a life together. I have a companion/friend/lover for all of my adult life. That didn't take away from the reality that:

Life takes work.

Loving takes work.

Living takes work.

Somewhere back in time, I had two catastrophic illnesses. Both were serious threats to my life. Suddenly the 'poetic' idea of kicking the bucket at 40 seemed, um, undesirable because even though the journey through our lifespan meant making a living, earning the respect of others, doing drudgery - working every day, doing vacuuming, paying bills - the payoff for doing those things was pretty high:

Life is worth it.

Love is worth it.

Living is worth it.

The second of the two illnesses took walking with one hand and gave me a wheelchair with another hand. In many ways, that no one could possibly understand but others who've had the same swap, a fair trade. People spoke as if my life was over, as if my life wouldn't be worth living, that I was now less loveable. They were wrong. Really wrong. I think you have to live a bit to get it. You have to have worked until there are blisters on your soul, you've had to do drudgery until you just can't wash another dish, you have to love through and past the conflicts that come when there are two and only one is right. You do. Then you learn bit by bit ... but for me, at 61 a fat, old, gay, disabled man:

Life is hard and because it takes work, it's worth it.

Love is hard and because it takes work, it's worth it.

Living is hard and because it takes work, it's worth it.

Friday, December 20, 2013

How I Want To Be

I get to work very early in the morning. I am usually the first one in, although there are other early birds who sometimes get there before I do. Yesterday I arrived at work and as the bus pulled up, I got my wallet out. I carry the key to the building in my zippered change compartment on the back of my wallet. I have never lost it. I have never misplaced it. I am very, very, particular about putting it right back where it belongs after I unlock the upstairs doors.

It's a dark, dark, morning. I was picked up by WheelTrans, before six and it's now a little before 7 - the ride was uneventful. I enjoyed looking out the windows and seeing the decorations on many of the houses. Children's hands had created an army of snow men along with a few decidedly busty snow women. It's the kind of scene that makes one long for a hot chocolate and the sound of sleigh bells. We arrived at work and I was getting myself ready.

I pulled out my trusty wallet, the one with the monkey face on it that I love but can't find a replacement for, worn and tattered as it is. Zipping open the change compartment, I am stunned to see that the key isn't there. My apartment key is there. But the key to let me in is gone. The driver is coming around to open the ramp. I can't get out, it's cold, I'll freeze, it's very early, I'll freeze. What do I do?

As the ramp is being unfolded, I say to him, "I'm sorry but I have a real problem." I explain to him about the key. I go into way too much detail, talking really fast and somewhat breathlessly, about how I always put the key back when I use it. I decided he even needed to know that I've been coming here for over seven years and I've never made this mistake. He stood there. patient and listening. He didn't interrupt me or try to deflect the flow of words. He let them trickle to a stop.

"Well, what would you like me to do? Any solutions to this?" His voice was patient.

I started to talk about a Tim's being around the corner, maybe he could let me off there and I could call for help. He nodded, told me it was a good idea, and folded up the ramp. I was on the phone trying to call Joe when I remembered where the key was, I'd put it in the small pocket above the big pocket in my pants. Then, with a shock, I remembered I was wearing the same pants.

When my fingers touched the key, I felt such bliss! I called to the driver, who hadn't cleared the end of the driveway yet, explained to him that I had the key and loved the sensation of the bus backing up. I got in to the building easily and was soon up in my office.

I have to say, the driver's patience, and understanding, and lack of upset, and willingness to find a solution that worked was notable. He was exceptional in his dealings with me. I never felt a bother. I never felt stupid. I never felt that he was, in any way, angry at the disruption to his day and to his schedule.

He's the model for how I want to be when I provide service. Hell, he's the model for how I want to be period.

Support that doesn't diminish - that's my personal goal.

Thursday, December 19, 2013

Climbing Up the Heirarchy Chair and All

I came around the corner and into a mass of people. I was going to be doing consultations in the far room but there were lots of other meetings, lots of other things happening there that day. As a result there was a melee of care providers and people with intellectual disabilities. I smiled and waved to a few of those with disabilities that I'd met before, they waved back, some calling out, "Hi, Dave!"

A young man, a staff, was sitting, angled on his chair, partly blocking my way. He was madly texting on his phone, I said, "Good morning," in advance of asking him to move but that became unnecessary because he looked up, right away, saw my, and said, roughly, "Yeah, yeah, hold on, I'll just finish this and move." He continued to text for a few second more - but how odd it is that those seconds feel so long. Then he moved. As I went by, one of the supervisors came into the room saw me, and called out, "Hey, Dave, how was your drive in this morning?" I told her that Joe was parking the car and that we'd made it in just fine.

The young man, who had spoken, not rudely but roughly, earlier, spoke up, "Hey sorry, I didn't realize ..." and then he was stuck. The end of the sentence would have been "... that you didn't have an intellectual disability." Of course he can't say that, he can't say, out loud, that the level of manners that you use, the modulation of your tone of voice, the approach you use to communication is determined by your perceived worth as a human being. I was annoyed but I didn't think that here was the appropriate place to address this.

It was the third appointment of the morning. The door opened an a older guy with a disability came in to speak with me. After about 10 minutes I asked him a question that he wanted his staff to help answer, "Can I go get my staff," he said. I looked at the woman who was in the room with me, my colleague and she nodded agreement and then, so did I.

When he came back he brought the young man who had spoken, roughly not rudely, to me. He saw me there, behind the table, with my note pad out, my fancy pen in my hand, and a senior player on their clinical team sitting to my right. His face froze for a second. We went on and did what we needed to do, his manner now was professional, and open, and quite friendly. His manner with the fellow with a disability was also, not surprisingly as it was under observation, quite supportive and warm.

Once done I asked if I could speak to him privately. My colleague took this as an opportunity to have a cigarette. He looked nervous as the door closed. I won't go into detail about the conversation because it was private but we talked about hierarchy and behaviour and about power and manners. We spoke about the 'better thans' who work with the 'lesser thans' and about the phrase, "I give him all the respect he deserves." The idea that we can determine an amount of respect deserved by another human being, is concerning - it's even more concerning when you buy into the fact that there is a "better" and a "lesser."

He sat there mortified. He only said once, "I didn't know who you were." After I explained that this wasn't the point - the point was that his level of respect, and friendliness and warmth went up with every rung I climbed in his mind. I suggested it would be easier just to assume everyone's on the top rung and everyone deserves respectful interaction. He agreed, apologized. He did ask if I was going to tell his supervisor. I asked what would happen if I did. He paled. I said, see being the "lesser than" isn't fun is it. No I won't tell.

I came back a few months later and saw him there. He's a supervisor now. He said that they'd noticed a big change in him and his attitude - he said he's never told them what happened, one day he might. I told him that the secret was safe with me.

(PS this happened a long while back and is written with the young man's permission)

Wednesday, December 18, 2013

I'll Wait Here

I don't know what's wrong with me.

It's almost like I've just given up.

Or maybe ... more like I can't be bothered to bother.

Since we've been back from our last trip Joe and I have been out a fair bit in our local community doing things that need to be done to prepare for the holidays. This means, primarily, shopping. There are a couple of stores that Joe and I go to regularly, we both enjoy shopping there and we know the stores well. One of the stores and I came to an agreement a long while back, after I threw what they probably called a 'hissy fit' and I probably called 'impassioned advocacy,' that there would always be at least one open aisle that would cross the entire store and one that would go the length of the store. This is a promised made about holidays and holiday displays and I'm pleased to say that even with, now, three change of managers, the promise has been kept.

So, we were outside this store, getting ready to go in. I was feeling a bit tired from all the travel and from some of the expectations for work that I still had to fulfil. I looked into the crowded store, I could see what I've come to see as 'my aisles' there, free of displays, waiting for me. I thought about the fact that even with these open aisles, the crowds of people, the tremendous care that I have to take not to knock anything over, and it all just seemed too much. I asked Joe to go on ahead and I waited elsewhere in the mall.

I've done that three times this season.

I just can face the difficulties in getting by things and people.

This is a season where people are either extra nice or extra nasty depending on whatever stressors they are facing. Although annoying sometimes, I prefer the extra, and often unnecessarily, nice ones - even the ones I need to thank for help I didn't either want or need to the nasty ones. But the idea of the spinning the 'human spirit' roulette wheel can just seem to chancy. So ... I stayed out.

I don't do this.

This isn't like me.

I worry that I'm simply going to become content with waiting outside.

I worry that I'm going to give over spaces that I've fought to be in.

I worry that I'm building a barrier, in my heart and mind, that's bigger than any in the real world.

Or ... maybe I just need a rest.

Or ... maybe I just need to give myself a break.

Or ... maybe I'm just gathering steam.

I hope.

Monday, December 16, 2013

Storm Warnings

The last couple of days have been harrowing. We set off home after work on Friday knowing that we'd make it just shy of half way - we aimed for, and got to, Binghamton in New York. When we pulled in to the hotel, Joe went in to check in and came out looking grim. "They are expecting a foot an a half of snow tomorrow, starting early in the morning." We still had five and a half hours to go and, according to the weather channel, all but a few miles would be in the area affected by the winter storm. We comforted ourselves by telling ourselves that the weather predictions always exaggerate.

They didn't exaggerate.

The first couple hours of the drive were hellish. We left early, before the plows had been able to do much with the snow, and for long stretches we were the only vehicle on the road. After we turned west at Syracuse, we got a break from the storm, we hoped, and prayed, that we were done with the snow.

We weren't.

At Buffalo it started falling and once we crossed the border we knew we were in for a difficult ride. About Hamilton I told Joe that the whole way I'd been worried. There are times that my status as a disabled person causes me anxiety because of a feeling of vulnerability. Driving through the storm, seeing cars off the side of the road, many abandoned, I knew that if something happened to us, if we slid into a ditch, I wasn't getting out of the car. We had rented a wheelchair van and I sat strapped to the floor on a vehicle that I'd not be able to get out of without a lot of struggle, a lot of effort.

Yikes.

Joe then told me that he'd been worried about exactly the same thing. He felt the responsibility to get us home safely, a normal thing, but that feeling was intensified because of my disability. He said that whenever he saw people standing outside, in the blowing cold, looking at their vehicle buried in snow - he wondered if there were passengers, who couldn't get out, left in those cars. He worried for the panic they'd be feeling.

We got home.

Safe.

But the trip took five hours longer than it should have. And not just five hours - five BIG hours of worry and stress.

But we're home safe.

And we're here now for awhile.

Friday, December 13, 2013

Moving To the Radical Side

Right now Joe is in the shower and as soon as he's out, I'm in. We are rushing around getting ready to go to the new venue for my last training of the season, in fact, my last training of the year. I'm lucky that the training I'm doing is to teach other trainers to teach people with disabilities about abuse prevention. We begin by having the new trainers watch me train people with disabilities who have agreed to participate in the day. I've been blessed for two days now by having awesome people with disabilities who fully work with me in order to make the training effective - both for themselves as for the 'new trainers' watching. There have been a lot of laughs.

I like ending my training year by doing sessions that involve people with disabilities. I got into this field because I wanted to work directly with people with disabilities and throughout my career I have managed, no matter what else I did or what position I held, to have direct contact with people with disabilities. I never want to be too far from my roots and too busy to have real time and hear the real concerns of people who live in care. It's refreshing but it's also sobering. I am reminded, every time I do one of the abuse prevention training sessions, of the joys and pains of community living as expressed by people with disabilities in the training.

During the training I feel like I'm honoured to hear the concerns and the fears of the group, I'm honoured to hear the hopes and the dreams. I carry away with me a renewed sense of commitment ... we need to do more that service delivery, we need to engage in societal change ... we need to confront bigotry and eradicate social barriers created by bias and ignorance. We need to do more. But we need to do more under the leadership of those who speak so eloquently of the lives they live and the goals they have in the community - to feel safe, - to feel respected - to be given a chance. Not much to ask for ... is it?

I'll be home late tomorrow. I'll be at work on Monday. And I'll be thinking all through the season about what I've heard, what I've been reminded of ... and about the need to recommit to the radical side of service delivery - making change happen. 

Thursday, December 12, 2013

Next Time

He seemed nice at first. He was pushing a grocery cart full of items to be stocked onto a shelf. He saw me come into the store and veered over to say hello to me. I was in my power wheelchair and I thought he'd just wanted to say 'hey' disabled person to disabled person. I was almost charmed by the gesture. I went about my business in the store and began noticing him often in the same aisle as me, with his cart, looking at me. After this happened three or four times, I began to get a little creeped out by him. He never stood close enough to me so I could speak to him quietly and ask him what was up or ask him to stop. I would have had to call to him loudly. His intellectual disability already centred him out, I didn't want my behaviour to add to it.

Then.

I turned an aisle and he was right there, he came at me with his cart, missing me by inches and on his way by he said something absolutely brutal and cruel to me about my weight and my disability. I was stunned breathless by the hurt and the surprise. I sat on the spot for a minute or two and then continued on my way. Thoughts raced through my head. I thought about speaking to the manager. But then, I knew if I did he'd probably lose his job. It's Christmastime do I want someone to lose their job at Christmas. He has an intellectual disability and it was probably hard enough for him to get this job, let alone another one.

Thoughts changed tracks, but raced along at breakneck speeds. I'm tired. I don't want to have to call a manager. I don't want to always have to be doing this kind of things. I'm tired. I don't want the emotion that will come from all of this. I'm tired. I haven't been home in days, I don't want to be bothered with this.

Thoughts. What he did was horrible. He hurt me. He scared me. This behaviour is unacceptable. If he was non disabled I wouldn't stand for it or question what I would do. BUT. I'm tired.

I didn't do anything.

I didn't report him.

I didn't write the manager of the store later to express my upset.

I let it go.

And I was wrong. Completely wrong.

Tired or not. Disabled or not. He verbally abused me - and scared me along the way. This behaviour is simply not acceptable. Who knows who he's going to approach next time? 

And there will be a next time.

He is the only person responsible for his behaviour.

And I'm responsible for mine - I will bear some of the blame for what happens ... next time.

Wednesday, December 11, 2013

Space Invaders

There is an end to my patience and to my generosity of spirit. I don't often reach the end of it ... but reach it I did after spending two hours shopping in a mall full of Christmas shoppers. Anyone who uses a mobility devise of any kind can tell you that it takes intense concentration to get through people, get by barriers and get purchases purchased. People move in odd, unpredictable, ways when in a crowded space. Darting left, darting right, coming to a complete stop after racing ahead, gathering in groups just inside our outside doors. All of it requires that I, who am operating a moving vehicle, focus, really focus on keeping everyone safe. It can be exhausting.

I had been nice and polite for a very long time, smiling sweetly and ensuring that I wasn't in anyone's way. I find it interesting that few seem to care if they are in my way. Some people seem to actually put themselves in my way so I can ask and they can give. This happened more than once. I was, for example, leaving a store, the only way out was a space between a mannequin and a display table. I was nearly there to go through when a woman dashed ahead and stood in that place. Just stood there, looking at me, waiting for the question. I asked if she'd let me through, she said, "Of course, dear." She called me dear! Anyways, as they say a wheelchair is often a cue for socially odd behaviour.

So, I'm nearly done. I am leaving a store. The aisle has just enough room for me to go one way and others to pass by me going in either direction. As there was no one there, I was going down the centre of the aisle. A late teen girl started down the aisle and I pulled over to the right, leaving plenty of room on my left. She saw me do this and also pulled over, coming straight at me. When we met, I came to a stop. She looked perplexed. I was in her way. There was ample space right beside me but she turned to 'scoot' by me. I said, calmly, "You aren't going to do that, there's not enough room." She said, "It's alright, I don't mind." I said, "Well, I do. You'll be right in my space and that will make me uncomfortable." She said, "What am I supposed to do?" I looked at the ample space beside me and back at her and said, "If you can't figure that out on your own, I'm worried about you."

It was like she suddenly saw the space. She's now embarrassed and jumped over to the other side and rushed by me. Easily rushed by me I might say.

Sometimes the problem isn't me.

Sometimes the problem isn't mine.

Tuesday, December 10, 2013

The Apology

Yesterday I wrote about the apology to be given by Ontario's Premier to people with disabilities who suffered through institutional care. I am about to post a verbatim record of that apology but wanted to say that the Premier did something that really made a difference to me. Several people with intellectual disabilities were there, in the legislature to hear the apology. Before making the apology, Premier Wynne, walked through the gallery in order to meet those who were there, speak personally to them and shake as many hands of as many people with disabilities as she could. It was as if she wanted to say something to them personally before making the public statement. I am a little in awe of the fact that Ms Wynne make the apology more real by speaking with and honouring those who were there. Then, during the reading of the apology Premier Wynne kept looking up into the gallery so that it was clear she was directing the apology to those who were there and to the people they represented.

The apology, regarding institutional care in Ontario, given by Premier Kathleen Wynne:
Mr. Speaker:
One of a government’s foremost responsibilities is to care for its people, to make sure they are protected and safe. And therein lies a basic trust between the state and the people.
It is on that foundation of trust that everything else is built: our sense of self, our sense of community, our sense of purpose. And when that trust is broken with any one of us, we all lose something – we are all diminished.
I stand to address a matter of trust before this house and my assembled colleagues, but I am truly speaking to a group of people who have joined us this afternoon and to the many others who could not make it here today.
I am humbled to welcome to the legislature today former residents of the Huronia Regional Centre and Rideau Regional Centre in Smiths Falls and to also address former residents of the Southwestern Regional Centre near Chatham, along with all their families and supporters.
I want to honour them for their determination and their courage and to thank them for being here to bear witness to this occasion.
Today, Mr. Speaker, we take responsibility for the suffering of these people and their families.
I offer an apology to the men, women and children of Ontario who were failed by a model of institutional care for people with developmental disabilities.
We must look in the eyes of those who have been affected, and those they leave behind, and say: “We are sorry.”
As Premier, and on behalf of all the people of Ontario, I am sorry for your pain, for your losses, and for the impact that these experiences must have had on your faith in this province, and in your government.
I am sorry for what you and your loved ones experienced, and for the pain you carry to this day.
In the case of Huronia, some residents suffered neglect and abuse within the very system that was meant to provide them care. We broke faith with them – with you – and by doing so, we diminished ourselves.
Over a period of generations, and under various governments, too many of these men, women, children and their families were deeply harmed and continue to bear the scars and the consequences of this time.
Their humanity was undermined; they were separated from their families and robbed of their potential, their comfort, safety and their dignity.
At Huronia, some of these residents were forcibly restrained, left in unbearable seclusion, exploited for their labour and crowded into unsanitary dormitories.
And while the model of care carried out by this institution is now acknowledged to have been deeply flawed, there were also cases of unchecked physical and emotional abuse by some staff and residents.
Huronia was closed in 2009 when Ontario closed the doors to its last remaining provincial institutions for people with developmental disabilities.
Today, Mr. Speaker, we no longer see people with developmental disabilities as something “other.” They are boys and girls, men and women, with hopes and dreams like all of us.
In Ontario, all individuals deserve our support, our respect and our care. We must look out for one another, take care of one another, challenge ourselves to be led by our sense of moral purpose before all else.
Today, we strive to support people with developmental disabilities so they can live as independently as possible and be more fully included in all aspects of their community.
As a society, we seek to learn from the mistakes of the past. And that process continues.
I know, Mr. Speaker, that we have more work to do.

And so we will protect the memory of all those who have suffered, help tell their stories and ensure that the lessons of this time are not lost.

Monday, December 09, 2013

Breaking the Silence - Today History is Made


(photo description: black and white photograph of Huronia Regional Centre. The institution sits like a large castle with turrets atop a hill. The grounds of the facility are in the foreground.)

Today is a an historical day.

Today, in Ontario, for the first time, in any jurisdiction in the world, a government leader, the Premier of the province, will apologize to people with intellectual disabilities for the conditions in the institutions and for the lives that they had to live there. It will be an acknowledgement of a historical wrong. It will also be a very public acknowledgement that those with intellectual disabilities are a 'people' who have their own history, their own political concerns, and their own identity as a minority that suffers prejudice.

Today an apology will echo through the land of the long corridor. It will be heard in places where pain was used as a tool of domination. It will be felt in places used to isolate and separate humans from humans. It will be seen as an acknowledgement that the first brick built with the intent of making captive those who had only committed the crime of difference was a mistake of the heart, a mistake of the mind and a mistake of the soul.

It was a mistake that affected the lives of those who lived and suffered through years of separation. Years of the pain of knowing 'in' while desperately wanting 'out'. But it was also a mistake that affected every single member of society. When one single group of people are removed from our midst, we are no longer community, we CAN'T be community. Community, if it means anything, it means 'all of us here together.' Community, cannot exist when some are hand picked to be cast away, set apart, to live invisible lives. We, as a society, excluded and by exclusion hurt the lives of others, hurt the lives of children who did not have siblings, parents who did not have their children, stores, their customers, churches their parishioners, schools their students.

I will hear today, a whisper, a whisper of blame towards the families who made the decision for their child to live away and apart. I WILL NOT HEAR IT. I WILL NOT. Families needed support and what they got was advice to put their child away in a place that could care for them. Families needed help and what they go was guilt - 'if you love your child you will put your child into the hands of those who know how to care for them.' Families needed acceptance and what they got was blame - 'the sins of the father;' and shame - 'what did you do to deserve this?' Families were rent apart by forces too powerful to resist.

Yet some did.

Some said 'No!'

And because those few did, because those who did built resources that weren't there before. They created to basis of what would be one day called the 'community living movement.' And it would be the community living movement that would lead us to today.

An apology.

The first apology ever given to people with disabilities, from a government, anywhere in the world. This apology breaks the silence.

And in doing so I hope it echos through the hallways of every institution everywhere in the world. I hope it echos in the hearts of those who endured separation, of those who lost what they can never get back.

An apology matters.

An apology will be given.

May it shake the foundations of ableist thought and disphobic intent.the world over.

Sunday, December 08, 2013

Waffles

I didn't know.

I couldn't tell.

It made my morning.

We had gone down to the breakfast room of the hotel we were staying in. Joe had done reconnaissance and had come back reporting that there was no one there! Well, it was a snowy Saturday morning, maybe people were sleeping in. I had made the toast, gathered my food, and helped Joe bring the odds and sods to the table. We were seated such that I was facing away from the small buffet that was provided as part of the cost of the room.

I heard them arrive and turned to see a young father, who looked as if he were in the military, usher in two children. I caught sight of the girl, about 9 but only heard the boy who Joe told me later was probably about 6. It was quite the production, them getting their breakfasts. They worked as a team. Dad was amazing, he guided them but did not command them. Both kids wanted waffles and he helped each of them use the machine after telling them rule number 'uno' was DON'T TOUCH THE WAFFLE IRON. Then first the girl, then the boy, made a waffle. He supervised, and joked with them. Sister asked brother to get her something from the far side of the buffet, he did, she thanked him. He asked her to reach something out of his reach, she did, he thanked her. These were great kids. This was a great dad.

Once they had their food prepared, each child carried their own plate and he carried a plate full of food for two. They weren't eating in the breakfast area but going back to their room. It was then, when they passed us, coming into view, that I saw the boy turn and say something to his dad that I noticed that the little boy had Down Syndrome.

I didn't know.

I couldn't tell.

There was nothing in the manner of his sister or in the tone of his father's voice that gave a clue to the fact that he had a disability of any kind. Throughout their time getting stuff, and it took time, they chatted and laughed and supported each other equally. Equally.

When I'm at an event with people with disabilities and their care providers, I can almost always tell, when a care provider is speaking, if they are speaking to a co-worker or a person in their care. Almost always. This is true both for parents and paid workers. Now, true, I work with adults, and true, those adults grew up in different times - but still - and I mean this - this was a remarkable experience.

I don't work with children with intellectual disabilities. I hope what I'm describing is the common experience of children growing up now. I hope that they are learning the lessons of respect from the get go. I hope something more though. I believe that the most important place for integration and inclusion is in the family. It's kids, like the one making waffles, who may well one day be the one. The one who leads a movement towards a society that is as inclusive as the family he grew up in.

Saturday, December 07, 2013

What I Missed, Why I Missed It ...

This week we will sleep in seven different hotels. We will spend hours in the car driving through all kinds of weather. We will eat food that is available rather than food we want. All of this is just part of the job when you travel for work. People often say that they would love to travel for work and neither Joe or I do anything more than nod - we recognize it's a romantic notion that travelling for work is glamorous. It isn't, it's arduous. Don't get me wrong, I'm overwhelmed with gratitude that I have the opportunity to get up in front of people and share my ideas and experiences. I take the responsibility which goes with that very, very, seriously.

But ...

And it's a big but ...

There is a cost to what we do. Last night I missed Vita's annual holiday party. I missed the one opportunity I have in the year to be with hundreds of our staff on a social basis. I have really enjoyed these in the past and as we were driving last night, through snow and roads that were becoming increasingly icy, I would check my watch to make sure I caught the time the party started. I'm not sure anyone noticed but when it was due to begin I closed my eyes and sent warm wishes to those arriving in the cold. I said a prayer that all would be safe there and on their journeys home. It wasn't much, but it was all I could do.

I am fortunate, very fortunate, to have a strong team in my department. They are a group of some of the most talented people I know. They are all thoroughly competent, they are all incredibly kind, they are all, each of them, willing to pick up any slack that's left when I'm away for a period of time. We stay in contact through email and, when necessary, through phone calls - but I know it's not the same. I try to be a support, at a distance, and across time zones, and for the most part, because they are who they are, it works.

Equally I am blessed by having a good solid relationship with the other directors, and ED, who keep me informed and involved over the time that I am away. They both understand and encourage me to continue to travel, and learn and bring back amazing ideas that I get from my experience with others. Learning always flows both ways. It's astonishing to have this level of support.

It was hard, though, last night. Sitting in a hotel eating delivery food and watching television in a hotel missing people that I am honoured to know and even more honoured to work with.

I wasn't there in body.

But I was there in spirit.

I hope that my presence was felt but not missed.

Today we get in the car again, heading to another hotel in another city. I hope what we do, out here, matters. I hope that the keynote I gave yesterday will have made a difference. I hope the work, upcoming, will create better service for those with disabilities.

It's this hope that has me here, in the early morning darkness, thinking about both what I missed and about the honour it is to have the opportunity and support needed to try, in my own small way, to make a difference.

Friday, December 06, 2013

Norman and Edwin Bluemien - A Picture of Two Men

(photo description is part of the blog)

I am in a hotel, checking emails, when I look up and see a picture directly over the desk. The photo looks to have been originally in a news paper and is of two elderly men in wheelchairs sitting on their farm in front of a barn and silo. There is a caption under the photo which gives their names and ages, Norman 87 and Edwin 84.

I am in a wheelchair accessible room, of course, and seeing this here intrigues me - a lot.

Was this part of the decor selected BECAUSE this is a wheelchair accessible room?

Was this just a funny coincidence?

On my part, I liked it being here. I like the idea that it was planned, not an accident. As a wheelchair user I find the picture of these too men fascinating. Edwin, the younger brother, is up front leaning back, lounging almost in his wheelchair, he's wearing a Detroit Red Wings baseball cap smiling into the camera. His older brother is sitting a little more 'portrait primly' in his pose. He too is looking straight at the camera, smiling. There is a real casualness in this photo. Both of them look completely comfortable with being who there are, where they are and how they are.

Awesome.

I've been in hundreds, maybe thousands, of hotel rooms. Many are like this one, decorated with a 'ye olde times' theme. For seven years my rooms have always been wheelchair accessible. In all that time I've never seen any social indicator of disability in a room I've stayed in. I'd never even thought about it before now.

But.

I think it's cool.

What do you think?

Thursday, December 05, 2013

And I Didn't Even Sneeze

I was holding the door open for an elderly woman who was having difficulty catching her breath after walking up the ramp towards the entrance. I was not in a rush, and even if I was, it only took a few seconds of waiting. She came through the door, looked at me and smiled. She thanked me, made a joke about what a 'gentleman' I was and then said, with meaning, "May God Bless You." I thanked her for her blessing. It was a nice moment between strangers. I believe she meant what she said, that she wished blessings upon me. I believe she meant it in the kindest possible way. And. Frankly. I liked it.

I do not always, as a disabled person, have an easy relationship with being 'blessed' by others. Only a bare couple of weeks ago, here in Toronto, (Toronto!) I was stopped by someone who wanted to pray for me, wanted to ask God to Bless me, wanted that blessing to heal me. I felt insulted. I felt violated. I felt belittled and devalued. I was not rude to the person who wanted to foist her blessings on me, I simply said that I was good with what God made. When she began to protest that God wouldn't have made ... I hushed her and told her that if she finished her sentence I would no longer react with patience and calm. She looked surprised! She hadn't seemed to notice that I was restraining myself in my dealings with her.

I believe that, in many ways, my life has been blessed.

I believe that, in many ways, my life continues to be blessed.

When the elderly woman at the door offered God's blessing, she did so as a means of offering me something important, something that would enrich my life. She offered it to me out of kindness and generosity and a sincere reaction to me as a fellow human being.

When the other woman offered me blessings it came from a very different place. Similar words completely different intent. This was not an act of generosity but an act of aggression. It was not an act born out of kindness but out of prejudice. She was wanting to use God's blessing to scrub the stain of disability off my soul. Um, no thanks.

Having a disability means figuring out, in many interactions, who you are to the person you are speaking to. Am I a fellow human? Am I less than human? Am I more than human?

After all that, trust me when I say, I hope you all have a blessed day - a day where you get to just be human, without guesswork, in every interaction you have.

Wednesday, December 04, 2013

The Awards Show!

Joe and I joked, as we drove away, about how many people were out after dark! We go to bed, pretty much every night, at eight in the evening. We had decided to go the "Abilities Award" which were being held in celebration of International Day of Disabled Persons. When we arrived we had to wait a bit as there were several accessible vehicles ahead of us, all with passengers to let off. There was a buzz of excitement about the place. It felt like it was supposed to: a gathering, a coming together, of a community.

Once in greeted the host of the event Jaime Castro and shook a bunch of hands and chatted with a fair number of people I knew. The room was full of people with disabilities and the first sense I had, beyond the buzz of 'fun' was the sense that I was in a safe place. A place that had been made purposefully welcoming, purposefully respectful. This is a rarer experience than it should be.

Justin Hines opened the show, I love this guy, with a couple of songs - and as always, he was brilliant. Then, the award show began. I had settled back into just enjoying the experience and then, when the second award was given for "Exceptional Disability Advocate in the city of Toronto" my name was called. Yikes! I didn't know I'd been nominated, I was there for the spirit of the event, I had no expectation of actually receiving an award.

Luckily we, award winners, were not expected to give a short speech. I did what was expected, went up, got the award, got my picture taken by those who'd announced the award - two city councillors from Toronto - and then zip back to my seat. It felt good to get the award from my own home community - the acknowledgement of peers.

The evening continued and there were an amazing array of dignitaries, politicians and leaders in the room who had come to join us, to participate with us, and to celebrate our achievements. There were people with a variety of different disabilities there - for an evening it seemed to be that the 'disability hierarchy' had been invited out of the room allowing us to be as inclusive within our community as we want the community - out there to be.

It was a lovely evening.

I was surprised and honoured to win the award.

What a way to end the International Day of Disabled Persons.

Tuesday, December 03, 2013

Lasagna: International Day of Disabled Persons

We are having lasagna for dinner tonight.

This is how we are going to celebrate the International Day of Disabled Persons.

On Friday, last, we were with a group of self advocates who have become abuse prevention trainers. It was a day to celebrate, a day to refresh ourselves on our purpose and our mission. It was a great day, laughter and learning, community and communion, difference and diversity. One of the fellows who was doing a demonstration of his training style was someone new to me. With excitement I came to realize that he is part of the second wave. A new trainer - someone trained to be a trainer by trainers with disabilities. I had done the original training. I had not trained this man. He was awesome. Seeing this happen was, there is no other word, a blessing.

At lunch we had lasagna. Joe and I are very finicky about lasagna. We make a really, really, good one. Exactly to our taste, flavourful and rich. We tucked in to our serving and found that it rivalled our own. It was amazing. As it turned out, shortly after we both had remarked, one to the other, that it was really good, the young trainer appeared and asked us what we thought of the lasagna. We told him it was awesome. He then told us that he had helped make it. He works at a restaurant helping out with pretty much everything, a job he loves, and he had helped make the food provided for our lunch that day.

There was some left over and we were given it to take home. We put it aside in the fridge. We're having it tonight.

There was a time when people with intellectual disabilities didn't train trainers.

There was a time when people with intellectual disabilities didn't have jobs to brag about.

There was a time when the talents of people with intellectual disabilities were as caged as they were - behind institution walls and the low expectations of others.

Not now.

NOT NOW.

After dinner we are going to a big disability event where we will gather and celebrate and give honour to those who have provided leadership and vision and direction to the disability movement. We aren't going to the dinner, because we have plans, but we're going to the celebration afterwards. I want to be there and be part of MY COMMUNITY. I want to be refreshed and inspired. I can't wait.

I know we have far to go.

I know we have much to do.

I know we have barriers to knock down.

But today, I choose celebrate who we are and who we are becoming. We need more celebration. I need more celebration.

I hope you all, wherever you are, mark this day in the way you need ...

in celebration

in protest

in anger

in joy

in determination ...

the day is as individual as we all are. I just wish I could share a bite of my lasagna with each one of you, it would take a big lasagna but I've met a guy who's up for making a batch or two more.

Monday, December 02, 2013

The Gift I Didn't Buy

We had about forty minutes before the movie was to start. I decided to pop into a store to pick up a gift. I screwed up my courage and headed in. These days shopping is a real hazard because of all the extra merchandise in the stores, I have to be very careful to avoid displays, the extra volume of shoppers and aisles suddenly made too narrow for me to pass. But, I wanted to get the gift, so I had to shop for it.

As it turned out it was on the second floor of the store. I went over to the elevator only to find that they had placed several tables of Christmas cards right in the area in front of the lift. I spoke to a clerk about getting upstairs. She looked at a very narrow space and said, "Oh, isn't that wide enough?" I said, "No," while watching a woman with a small stroller turn back not even attempting to get through.

The clerk, grudgingly, moved some of the tables, making just exactly enough space. I mentioned to her that blocking the elevator was really bad planning. She said,  and I'm quoting here, "I'm not responsible for where they put stuff."

I stopped and stared at her.

She glared back.

I didn't move.

She began to look uncomfortable.

"What?" she asked.

"I get that you don't own the store, I get that you don't have the power to make decisions about what goes where, I do."

"Well, I don't."

"I know that, but you do have the ability to carry the message forward. You now see a problem, you don't just get to pretend it has nothing to do with you."

"It doesn't."

"It does. Your silence is simply acceptance of something that you know is wrong. I don't expect you to fix it, I do expect that you mention it, that you take it forward. I shouldn't even have to ask."

"Then don't."

"I won't."

I managed to get upstairs, I managed to find what I was looking for, but with the delay with the elevator and the painfully slow way past barrier after barrier, I was unable to pay for the purchase. I'd miss the beginning of the movie. I hate missing the beginnings of movies.

It's expecting too much, I suppose for someone to care. To take some action. The idea that "I can't do anything about it" is simply a cop out. It presumes that inaction is a reasonable response to a problem or a barrier. All she needed to do was say, "I have little power here but I'll use what I have to talk to the manager about the needless barrier."

Even if the manager doesn't listen.

Even if nothing changes.

Action is better than inaction.

Caring is better than apathy.

Losing is better than acquiescence.

Doing damns the darkness.

Sunday, December 01, 2013

I Wonder: World AIDS Day

I wonder if they know.

I hope they do.

I hope they don't.

We are sitting having breakfast in a busy cafe. There are people everywhere. The design is utilitarian. The tables, communal. Four or five long tables lined with chairs provide the seating. There is only one table, for two, set off to the side. No one ever sits there. Couples and small groups grab seats and make portions of the long table theirs. We sit at the end of one of the tables. Further down there are two children, waiting for their father to bring them breakfast from the counter. The boy knocks over the metal chair next to him, "It falled over all by itself, Daddy," he calls to his dad who didn't notice the tiny accident. We smile.

A young couple, boys really, come along with their tray packed with food, and sit at the next table over, both on the same side. I remember that age, thinking that I was all growed up not knowing that the growing continues for a very long time. They are casual with their relationship, little touches, loving looks, all indicate that they are in the throes of a new relationship. No one around much notices, no one around much cares.

I wonder if they know.

I hope they do.

I hope they don't.

I notice that the older of the two young men rests his hand on the knee of his boyfriend as they speak. Its such a natural thing to do. Its such a loving thing to do. It seems radical to none, except maybe, me. That move pulled me back, back in time. To our first few weeks of living in Toronto. Of going to watch the crowd of howling heterosexuals pelting tomatoes and eggs and stones at gay men, on Hallowe'en, going into the Saint Charles Tavern. Of police watching, smiling encouragement at those who managed to pelt filth or hurt on to those who braved the sidewalk. Single, solitary, men claimed the street. Later, much later, our city would become freer. Sidewalk by sidewalk, street by street, place by place. Later, much later still, would come touch. Touch like a hand resting on a knee in a restaurant full of families, full of the world.

I wonder if they know.

I hope they do.

I hope they don't.

It came from nowhere. We were dying. Our first walk down a hospital corridor. Andy was sick. The disease was still nameless, a dread that couldn't be spoken of except in rumours and whispers, he sat alone in a room, lost. He recognized us, but didn't know where he was. He kept asking us to take him back to his room. This was not his room. These were not his things. "Please, take me back." We were young, confused, we tried to reassure him that he was where he was supposed to be. He wasn't of course, so he didn't believe us. On our way out he grabbed my hand, "Do I deserve this," he asked, "is this my fault?" Their meal is done and now they are sipping on their coffee. Now they simply hold hands as they talk. Hold hands. Touch. Love.

I wonder if they know.

I hope they do.

I hope they don't.

Some say that no-one cared. That government didn't respond. That the medical establishment was uninterested at best, hostile at worst. I don't agree. They aggressively cared, they watched us die with grim pleasure. We got what we deserved. Preachers preached hate about love. We were held responsible. Our touch was lethal. Our love was punished. Two men were arrested at Yonge and Bloor, blocks from where I write this, for kissing. Just kissing. It was a crime. We were felons. The death penalty had been decreed on a whole community. There were those who openly cheered our deaths. There were those who watched simply silently pleased. Those who mourned, did so quietly. At first.

I wonder if they know.

I hope they do.

I hope they don't.

The younger man gets up and goes to the counter, he gets a danish. They laugh about how hungry they are. Their voices full of innuendo, their eyes full of each other, full of what the day will bring. The pastry is ripped apart, shared.

I wonder if they know.

I hope they do.

I hope they don't.

Someone, I don't know who, got angry. Suddenly the love we shared privately, alone, together, became the love we shared publicly in protest. There was a rising up. There was a chorus of dissent. This was a battle that would be fought. In the same streets where we had been pelted with filth and hurt, we now marched with conviction. Our lives mattered.

OUR LIVES MATTERED.

OUR LOVE MATTERED.

WE MATTERED.

Suddenly. Suddenly. I am back in the present. Joe is putting away the tray and the cups. He is knocking down my foot petal so we can be on our way. We've things to do today. We've tasks that need doing, we've lives that need living. We survived to see the day. This day where touch was touch and love was love and two young men moved about in freedom as if the world had always been thus.

I wonder if they know.

I hope they do.

I hope they don't.

Saturday, November 30, 2013

< 3 My Testicle and Me



The following article was published in Contemporary Sexuality, a publication of AASECT (American Association of Sexuality Educators, Counselors and Therapists) May 2013, Vol 47. No. 4. I am publishing it here with their kind permission.

A note about the following article. I could not copy their edited copy of my final draft. Their edits made it better, apologies for the uncorrected errors not found in the final copy.  Blogger refuses to let me put the symbol < right next to anything else, I've had to put a space between  it and anything else. I hope your eye simply removes that space.

Finally, thank you for those who have donated to my Movember fundraising attempt. I had aimed at ten donations and fell far short of that. I decided to go ahead and publish anyways and hope that some others would feel moved to make a small donation. Links to make a donation in a variety of countries can be found on an earlier post.

< 3 A Graphic Discussion About My Testicle

< 3

The first time I received an email with the notation < 3 on it, I was struck silent. The person sending me this is someone who thinks that “darn” is a curse word. He would never, ever, ever send a pictogram of testicles in an email. Imagine how disappointed I was to find out that < 3 represented, not testes but ‘heart.’ I desperately wanted to tell my correspondent how I first interpreted his email but, in a mammoth bout of self restraint, managed not to.

00

I have drawn probably at least a couple thousand sets of testicles in the last many years. I do a fair bit of abuse prevention training and, in one part of the training, those attending, people with intellectual disabilities, are presented with an outline of a body.  They are asked to call out the parts that need to be drawn on the figure. Now, in fact, they don’t often call out “testes”  or “testicles” … no, they use the words that we all use, most commonly, “nuts” and “balls.” There is usually a lot of laughter during this exercise. Of course we end up discussing words that are used to talk to doctors or to police and thus “nuts” morph, verbally, into “testicles.”

0

I am a man. There are many stereotypes about masculinity that I, as a gay man, don’t buy into. I don’t like sports. But some aspects of the stereotype I fit.  I do like balls – my own included. As someone who has strongly advocated for the rights of people with disabilities to be sexual I’ve always been kind of pleased to hear, “That Dave, he’s got balls man!!” Yep, I do, I’d think. Figuratively and metaphorically I < 3 my < 3.

((00))

I was standing in front of an audience of 300 somewhere in the wilds of Connecticut. I felt my leg begin to go numb, I thought it was about how I was standing, so I moved around a bit. At break I sat down to rest, I didn’t know then, that that moment would signify my transition from standing and walking to sitting and rolling. By noon, I knew something was very wrong. By two, I had to, for the first time in my career, halt my presentation before finishing and head home.

The first rest stop was alarming because I couldn’t get out of the car. Joe had to assist me. I’d hold on to him and then drag the one leg along. I knew I hadn’t had a stroke, but I knew something was wrong. We arrived home at about two in the morning. I’d convinced myself that I’d just gotten over tired, that I really needed rest. 36 hours later having fallen over in the bedroom, forgetting that I could no longer walk unassisted, we were on the way to Emergency.

They brought me a wheelchair so I could get into the building. I saw this person, then that person, all as part of the process of checking in and being assessed for what level of emergency I presented to them.  Finally, I’m changed into a gown; I’m laying on a bed in the hallway waiting for the physician to come. When he did he asked a few questions. In my answers I told him that I had a small infection on my upper thigh but it didn’t seem to be anything too serious.

He lifted my gown.

He took a good look.

He said, “Oh, my, God.”

And disappeared.

Twenty minutes later he returns and pushes me into an examination room. He isn’t alone. He is with about four other doctors. This is Sunday, these were probably all the doctors they had there that day! They look, they all look really concerned – and slightly fascinated – one said, “I’ve never seen this outside a text book.” Then they began talking about me, forgetting I could hear. It was clear that I needed surgery within the next few hours; I would not survive until morning.  They called someone, I don’t know what her position was but she must have been senior.  Could the surgeon be called in they asked her. I would die without immediate surgery. She authorized the call.

I wake from surgery.

Coming too was a relief. I’d signed a consent form  for surgery after being told that there was a “good chance” that I’d not wake. I saw Joe’s face. He looked tired. He looked worried. I asked him if everything went well. He didn’t nod his head. He glanced over to the doctor who was, by then, standing there. The doctor answered, “It went fine. You came through the surgery well.” Then, the doctor left. I saw Joe’s eyes follow the doctor, he looked shaken.

Something’s wrong.

00-0= 0

I fall back asleep. It’s a fitful sleep. I was feeling nauseous because of the anesthetic and I knew something was wrong.  I wake again and Joe is sitting beside the bed. “Tell me,” I said. He said, “They had to amputate one of your testicles. It couldn’t be saved.”

I was stunned. No one had mentioned to me anything about my testicles. The paper I signed for the surgery said nothing about amputation.  Make no mistake, I would have agreed – life with one ball is still life with one ball – but I didn’t know how or what to think, how or what to feel, how or what difference this would all make. I was completely confused and totally frightened. My body was altered, made different.

Masculinity and I have an uneasy relationship to begin with. As a boy I was chided, teased and bullied because I wasn’t “one of the boys.” I didn’t want to play ball, I didn’t want to climb trees, I didn’t want trucks for toys. I was a “Nancy boy” who “seemed normal enough.” I had to take a test at one point about my maleness and they asked questions like “Do you prefer the smell of a fresh caught fish or the smell of perfume?” Well, I think that fish are smelly, not good smelly, bad smelly, and I was at that na├»ve age that still thought that honesty was the best policy. The results weren’t good news for my parents … they were all surprised that I wasn’t wearing my mother’s clothes (they asked her that in front of me).

But I knew I was a man. By then I also knew that I found boys more attractive than girls and yet I liked to hang around with girls more than boys. My proof that I was a man?  < 3 plain and simple. I had balls, I was a boy, that was an easy equation to make and it’s one that gave me some comfort. Let others discuss my masculinity or my ‘maleness’ or my ‘gender identity.’ I knew that I was a man who thought other men were hot – and my self knowledge kept me sane while discussions about the fact that I thought hockey was boring swirled round me.

0                                                  -->0

Then someone threw one of my testicles in the trash.

It’s a new doctor now. An older man. He is followed around my young doctors, very young, as he comes in to see me. He’s gruff. His bedside manner isn’t for me; it’s to demonstrate to young doctors how to be imperial. He asks a couple of questions of me. I answer. He turns to leave. I ask if I can ask some questions. He looks annoyed but he stops to listen. I ask the other doctors to leave. He’s outraged. They are there to LEARN. I am now annoyed and I said, “Well, they can LEARN that patients have a right to some privacy.” They leave.

This isn’t the best way to begin the discussion. For all the times that I have drawn testicles, for all the times that I’ve taught about what they are for and what they do, for all the hours I looked at them in a mirror as a kid, I discovered there were things I didn’t know. Like – what happens when one magically disappears? So I begin and say, “When I woke up I was told that I’d had a testicle removed.”

What did I expect?

I don’t know – maybe too much. I expected to have this man to be a little sympathetic. I’d had an amputation for God’s sake. Further, I’d had my genitals disfigured, cut off, thrown away. I was feeling a little … DAMAGED. But I didn’t get sympathy. He actually said, “Yes, so?” I start to cry. I want something from him. I want reassurance. I want him to spontaneously answer all the questions that I have.

Will I still be sexual?

Will I still be able to get and stay erect?

Will I still be lovable?

Am I deeply disfigured and damaged?

I squeak out a question about my sexual abilities. He says, “What are you worried about, you’ve still got the other one.” And he walked out.

I lay in the room a long time.  My hand reaches down to touch where the surgery had happened. There are bandages upon bandages. I feel nothing, then I begin to weep as I realize that, where I’m touching, there’s nothing to feel.

-0

It’s gone.

I tried several more times with several more people to get answers.  My questions were dismissed. Worse, though, was that I was made to feel “unmanly” because I was feeling “unmanly” and that I was experiencing girlish emotions. One nurse said, “It’s not like you had a mastectomy.” I wanted to say, but didn’t, “Yes, it’s like I had a mastectomy, except, no one cared.”

And … I’m not supposed to care either.

< 3 = < 0

It’s taken a long, long time to process what happened to me at the hospital, both the amputation and the lack of care or concern for my reaction to the surgery. I wondered for the longest while why ‘I’ didn’t matter, why ‘my’ concerns were considered silly or foolish. I asked myself questions.

Was it because I am exceedingly fat – did that make me into a non-sexual, non-gendered being?

Was it because I was gay – did that make any my questions about sexuality irrelevant – I’m not going to make babies with my boyfriend anyways?

Was it my age – I was in my fifties, so who cares if an old geezer gets off?

Was it simply my gender – men don’t have feelings anyways, really, do they?

In the end, I don’t know why what happened happened. I guess I will never know. I do know, however that I was lucky to work in the area of sexuality, I knew where to get information, I knew, maybe more importantly, what questions to ask.

What I was left with, however, was a scar.

One on my body.

One on my soul.

It’s hard to completely not matter. It’s hard to look into the eyes of someone paid to care and recognize that they don’t.

At all.

It was a ball. It was thrown away. Get over it.

Well, I guess me writing this means that I did, eventually, seven years later, get over it. Up until writing this down, I’ve never spoken about the loss of a testicle or the journey that resulted because of it. I wasn’t ashamed about that tiny loss of weight, but I somehow felt unmanly talking about the fact that my feelings were hurt because my hurt wasn’t acknowledged.

Perhaps I am a ‘Nancy Boy’ after all.

And if I am, I’m good with that.

And I’m good with < 3ing my < 0.