Bagpipes, Drum Majors and Another Kind of Pride

Right now it is quiet.

Really quiet.

For the entire weekend we've been surrounded by friends and family and festivals. And. Of course. Noise. For the most part it's been a joyful noise, but it's noise nonetheless. We actually planned today to do quiet, peaceful things. We enjoyed the mayhem of the street festival and the fun and the frolic of the parade, we enjoyed it all. But we're 61 year old men, who go to bed at 8pm and who live, mostly a very quiet life. So today - we're going to one of the museums near us and we're going to eat leftovers from our traditional anniversary dinner (hot dogs and potato salad).

Oddly, amongst all activities that went on, I think I'm going to remember two moments that happened, very quietly, with two different men that we met. While we were waiting for the parade to begin, it was a long wait, a fellow came by wearing a kilt and carrying bagpipes. Both Ruby and Sadie have been showing interest in bagpipes, so, as he passed by I asked him if he had a few minutes. He stopped, said that he did, so I told him of the girls interest and asked him if he could show them how the pipes work.

He then set about doing a little workshop about bagpipes for the kids. He took some of it apart and showed them how things worked and where the sound came from. The kids were rapt by his presentation which he did lovingly without rushing through. A tremendously nice fellow was he.

Then, as we continued to wait we moved over to be in the shade and found ourselves next to a military band. Ruby noticed the drum major practising with the mace with which he would lead the group. She was fascinated by the smooth movements and the intricate way it was used. Again, as he came by I asked him if he had time to explain to the girls what it was he was doing and what some of the movements meant. He let each girl hold the mace, showed them the position it should be placed when saluting and they each practised. They had questions, of course, just like they did for the fellow who taught about the bagpipes. The questions, again, were answered without rush.

The weekend was so busy and so frantic and so fast paced that it was nice to find that people were still willing to take time and share their interests with a couple of little girls. Joe and I, both admit, that we learned stuff about bagpipes and military bands that we didn't know before.

They took their time.

To share their pride in what they do ... at a place where they had gathered to show their pride in who they are ... that, to me, is cool.

Blessings for the Day

Church Street is the epicentre of the Pride activities. Though the parade is today, yesterday was a massive street fair. We started and the north end and headed south, somewhere in there we stopped for lunch, for ice cream, to buy toys that, on the pull of a trigger, sent bubbles flying everywhere. Ruby and Sadie were having a terrific time. Sadie got up on stage at one point and danced her feet off - winning a wonderful prize for her efforts. Ruby threw the perfect ball and sent a man deep into the dunk tank.

The streets were packed and yet everyone was in a deep mood of graciousness. When I needed space to get by, people just made it happen. I encountered nothing but well wishes and people who treated me as if I was a welcome part of the throng. I spoke with another disabled person, a woman also in a wheelchair, and she said the same, "It's like I'm suddenly visible and pathways simply open up." It was, indeed, and unusual experience for wheelchair users in crowded spaces.

After the girls got their 'bubble guns' they had a wonderful time spraying bubbles that soared into the air, all of them making iridescent rainbows in the bright sunlight. I noticed a fellow, a tall man, slowly making his way up the street. When he got near us Ruby ran over towards him and sprayed bubbles everywhere. The wind carried the bubbles up and over him. I saw a slow smile form on his face. I said to him, "You've just received a bubble blessing!"

Those words hit him. Hard. He stopped, looked at me, eyes moistening. "I haven't been blessed for a very long time. Thank you and thank the little girl too." I said, quietly, that I would thank Ruby. It seemed right that he know her name.

I felt a deep sadness for a few moments afterward, that sadness was replaced with a deep sense of gratitude. Spending the day with Joe and with Mike and Marissa and Ruby and Sadie as we simply enjoyed the day was one of the many blessings in my life. One of the many, many blessings.

Today is our 45th anniversary, Joe's and mine, and we are going to spend it with our 'little family' and we'll march in the parade with my work family and we'll exhaust ourselves laughing and sharing moments together. Today I will remember how incredibly blessed I am. Today I will remember that 45 years ago I met a man who, together with me, craft a life of purpose and meaning and fun. 45 years ago we began our life together, as a couple, holding on to each other tightly, in a hostile world.

Just before we stepped out of the heat and into the cool of a restaurant to get something to drink, Ruby and Sadie ran round us shooting bubbles into the air, their laughter at giving us a 'bubble shower' echoed in the air above us. I looked up and through the bubbles and the rainbows on their surface I saw Joe laughing. And I knew that I had again, as I have been constantly, blessed.

Old Dog: New Trick

While we were out walking today, with Ruby and Sadie, I was holding Sadie's hand as we walked across a busy intersection. She told me she liked coming down to the city. I asked her what her favourite place in the city was. I expected to hear the Royal Ontario Museum, the Aquarium, the subway, all places I know she loves. But she answered quickly and confidently, going in an entirely different direction: the nail salon.

No question the girls like going over for mani-pedis. I have to admit that it wasn't long ago when I didn't know what that term meant.  As it happened, our plan was to go to the salon that day. The girls were going to get their hair done and then get their nails done so that they were all ready for the big Pride parade on Sunday. We'd talked about their nails and our plan, well ... kinda really my plan ... was for them to get rainbow nails, a different colour on each fingernail.

We got to the salon and Ruby quickly picked out five colours, making sure she was getting rainbow colours. Sadie on the other hand picked out two, blue and sparkly red. When she handed them to the woman who would apply them, I said, "No, no, Sadie, get three more colours so you can have a rainbow." She said, "I want blue and purple." I said, "But what about the rainbow," my tone a little (or maybe to her, a lot) insistent. She said, "My rainbow has only two colours."

I leaned down to hear getting ready to encourage her to pick three other colours. Then I saw her. Really saw her. She was clutching those two colours, she looked excited about getting them on her fingers, she also looked a bit ready to dig her heels in. I took a breath and said, "Sweetie, if you want just two colours, I think that's a really good choice." She burst into a grin and grabbed out towards my hand, which was hard to do with the blue and the sparkly red bottles in her hand.

She went off and had a lovely time getting her mani-pedi in her 'favourite place in Toronto.'

All those years, all those years, when working with people who made choices that were different than what I thought the right choice was - all those years of 'talking people into what they didn't want,' all those years of getting caught in power struggles about things that don't matter. I've learned from those years. Ultimately whatever colour she has on should be the colours she wants, ultimately her experience of going and the excitement of picking out colours for her nails needs to be respected and maintained. Ultimately she needs to know that when she uses her voice over things that are a choice, her voice will be heard.

Everyone had a great time and Sadie was really happy with her nails.

And I was really happy that I resisted the urge to 'know better' what she wanted and to let go of what was in my head and let what happened come from her head.

When  we got home and I was sitting in my chair in the front room, she came running over to show me her nails for the hundredth time. I said they were beautiful and she gave me the biggest hug.

I don't think it was for my compliment.

Calls

My job has become more interesting of late. My job title is Director of Clinical and Educational Supports and as such I oversee the various treatment programs in my home agency. It's a job I enjoy and I get to work with wonderful people who are part of the team delivering these services. I know many of the people served through various events and through having done a lot of abuse prevention classes years and years ago. Others I know through the Rights Group, our self advocacy group, as I was there at it's inception and I helped facilitate the Bill of Rights for our agency, which was done under the leadership of the Rights Group.

But here's the thing. A change is happening. I'm getting independent calls from some of those who are being served who want to come and discuss what's going on with treatment and ideas that they have for making their lives better. Some come with disagreements with a decision that was made. Others come with suggestions as to how things might be better tailored to their wants and needs.

I have one word to say about this: Awesome!

The fact that people with disabilities have free access to pick up a phone and call a director and ask for meeting times to discuss their lives, the treatment plan in place and their future is simply awesome. To a one they come in well prepared, they state their case without anger or frustration, they work through with me what their concerns are and, as I am briefed before these meetings by their therapists, we come to an understanding, make some changes or adaptions.

What's even cooler is that their therapists encourage them to do this. It's not seen as 'going over my head to my boss' but as 'developing appropriate self advocacy skills.'

I have two words to say about that: Freaking Awesome. (I love my team.)

Remember, I'm old. I've been doing this for a long time. I come from a time and place where people with disabilities weren't even at the table when discussing issues around goals and around programs. The journey from there to where we are now has been astonishing.

Maybe we are, indeed, on our way to the day where treatment will work because the change process has become a partnership not an imposition.

eDave

I have just finished doing a series of lectures, via webinar, for an organization that provides state wide training. I'm not particularly comfortable with all the technical stuff and every time I had to present I had to figure out how to connect my bluetooth headset to my phone. Every time I had to slowly work through how to connect computer and phone to the network, turn my camera on, and the be set and ready, on time, to do the presentation.

It's a different kind of phenomenon training this way. I wasn't able to see my audience and there wasn't much discussion but I was able to feel them there, oddly, and feel them listening. I sat there in my office chair at home, lecturing to sites all over a state that's far away and to which travel would have be complex. It was, in the end, kind of a wonderful experience.

I like the idea, as a teacher or as a trainer, of having the opportunity to share information and insight and maybe even spark some debate or discussion afterwards. I also like that I feel a future here that technology may be able to make me a part of. It's no secret that travelling with a wheelchair and other equipment that makes it possible for me to get, comfortably from one place to another, can be difficult. While, now, I can still do all that, and, now, I still enjoy doing all that. There may become a time where that is more difficult.

My future, in my mind, does not think of retirement. I don't know how you retire from a 'cause' or from a 'mission.' So, when this series was all over. When I realized that I was able to set it up and then deliver the training - I thought maybe, just maybe, I'm going to get to do what I like to do even when I need a different way to do it.

I've got several trips lined up over the next year or so and I'm thrilled about that. I like meeting people, I like learning from my audiences, I like seeing new ways of doing things. And now, maybe, just maybe, I can like doing that for a very, very, very, long time.

Wanna Guess?

Life is an odd thing isn't it?

I was pushing myself towards the restaurant where I was joining friends for dinner. Joe had gone back to the car to get his glasses, he'd left them on the dash. I was enjoying the exercise that comes with the rhythm, push - roll - push - roll. I rolled by a group of people watching the World Cup on a screen set up in the mall. One of those watching broke from her group and approached me saying, "You are Dave Hingsburger aren't you?" I said that I was. She then told me how much my work had meant to her and how she thinks about her job supporting people with disabilities differently after having read my books and articles. It was a quick affirmation. I thanked her and we shook hands, then she was gone back to her group.

Nice.

It was particularly nice because when we'd parked, in one of the disabled parking bays, we were right in front of a huge statue that sits outside the mall. The statue is on a raised piece of land and there are a few benches around it. On one of those benches sat a woman, maybe 50, who noticed me get out of the car and into my chair. She stared one long continuous stare as I made the transfer from inside the car to standing beside the car to sitting in the chair to putting the leg rests on to turning to leave. The stare was accompanied by a slow shaking of her head, in quiet disapproval. Her face was disapproving and judgemental. I was someone she disapproved of, deeply disapproved of. She knew I'd seen her, she wanted me to see her. Disapproval isn't worth it's salt if it doesn't flavour someone else's day.

Not nice.

My life often ping pongs between approval and disapproval, value and worthlessness, honour and hatred. But it doesn't usually happen so closely, one to the other. What troubles me, and I may be alone in this, but I know that in a week or two I'm going to remember one of these two interactions. One of these two women will stay with me longer than the other.

Wanna guess which one?

Because the answer to that question is one of the tragedies of my life.

Flowers

 

(photo description: a bouquet of rainbow coloured flowers)

It was time. Early on, in Pride Week, we make a point of visiting Ron's marker in front of Ron's tree. When Ron passed away, his 'loving companion,' George Hislop had the city plant a tree in Ron's memory. Originally the tree was planted behind the 519 Community Centre but was moved to the George Hislop Parkette, one of the cities small urban parks downtown. We go by the tree often, and we always stop, but once or twice a year, we like to spend a little more time with Ron, and we like to bring flowers as a gift to Ron and as a means of saying to anyone who passes - 'this man is still loved and still remembered.'

 

(photo description: The maker in front of the memorial tree. It reads: Dedicated to the memory of Ronald Shearer July 6, 1932 - April 15, 1985 Loving Companion of George Hislop.)

We were close friends of George and Ron for many years. I had first seen them in the Star Weekly magazine when they did an early, and controversial, interview about their lives as a 'homosexual couple.' I read that article over and over and over and over and over again. I was barely 16, just months from meeting and falling head over heals with Joe, and that article gave me hope. Hope that I, one day, might be loved, might be less alone, might be happy. Until that article I had pictured a bleak life ahead for me. I kept the magazine article until it fell apart.

Meeting Ron and George for the first time was a remarkable moment. I wasted no time, telling them, stumbling over my words as I spoke, about the effect that their courage had in my life. How they had rescued me from despair and from hopelessness. We were well aware, by then, of the work that George had done in the gay community through advocacy and through the sheer force of his personality and his conviction. We saw something else too. We saw that Ron had a pivotal role in the work that George did, always quietly in the background but with a strong hand on the helm. Ron kept George focused and Ron mapped out strategy and helped with every speech, every word, that was to be said. He, like George, had an iron will when it came to gay liberation. He, unlike George, would never receive public recognition of his work. But he didn't care, George knew, and he loved George, so that's all that mattered.

Joe and I, like many young people those days, had no idea how to be 'gay' ... how to establish ourselves in a hostile world ... how to simply be comfortable in our own skins. This was work that Ron took on. Over time he came to understand that he was a mentor in our lives, he took the role seriously. He was interested in my career, he encouraged me to use my voice and to develop an intolerance for injustice. He felt that too many people gave in to the temptation to a 'selfishness' when it came to activism. 'I protect me and mine, to hell with you and yours.' Ron abhorred the idea of the silent acceptance of the oppression of anyone. When I would tell him of an outrage I'd seen in my work, his response was an immediate 'Well, what did you do?'

(The bouquet of flowers, on the marker, in front of the tree.)

But it certainly wasn't always deep conversations and heady discussions of social justice. Mostly, we simply had fun together. Ron and Joe and I would sit laughing and chatting at a bar table while George was off, being George, chatting up everyone in the bar. When George would return, we'd all spend the evening just enjoying being out together. George, like Ron, was interested in our lives and the two of them became a little more than simply mentors, they became really good friends.

I had the honour of speaking at Ron's funeral. It was one of the hardest things I have ever done. We were with him throughout his illness and there with him, sharing strawberries, the night before he died.

I can still hear him laugh.

I can still hear him try to tell a joke - he never could.

I can still feel the touch of his hand on my arm.

I can still see his arm resting over Joe's shoulders.

And so, because I believe that remembering people is part of the job we have as those who yet live. We, yesterday, took flowers to Ron's marker, in George's parkette, and left flowers. There were a few people in the park who watched with curiosity. But we didn't care. While the gay community owes Ron and George and permanent place in the history of the movement, we owe them a personal place in our history as people.

From the moment I met them in the paper to the moment I met them in person to the moment we placed the flowers on the marker these men have always been part of the man we are, as the couple we became. They opened their hearts to us, they bade us welcome. We had been so unused to welcome. So very unused to welcome. That it felt, finally, as if we'd come home.

Flowers are such a small gift.

But our gift wasn't the flowers, they were only the symbol.

Of our ongoing thankfulness that two men chose to give their time to two boys who had a lot of growing to do.

Kenzie's Dance

Someone sent me this clip. Watch for this lovely man's lovely daughter's smile at the end. This man demonstrates what's best about being a parent, what's best about being a dad.

Sometimes commentary is simply unnecessary.

Assault!

So.

Hear this.

Assault is assault.

I was going north up Yonge Street, I saw a man with an intellectual disability coming south. He was with a staff or some other kind of care provider. As he passed me he reached out and slapped me twice, hard, in fact very hard, on my stomach. He made a comment that wasn't understandable and when he swung back to hit my stomach again I told him firmly 'don't do that again.' I spoke firmly and it was clear I meant what I said.

The staff, finally wakes up, and says to me, 'He doesn't mean anything by it.'

I looked at the staff and said, 'He struck me. Twice. It means something to me.'

I sat there for a second trying to decide what to do next. I wanted to call the police but I was also supposed to be meeting Joe in a couple of minutes. I said to the man who'd struck me. 'I'm not going to call the police this time, but what you did is against the law. You can't hit people like that.'

The staff began, in front of me, to tell him, 'Everything is all right.'

I said to the staff, 'Everything is not alright. This behaviour is criminal. If he doesn't learn that he can't hit random strangers, he's going to get in very big trouble. Why aren't you providing him the support her needs.'

The staff said, 'Most people don't mind.'

Shit, thought I, he's done this before, and often. 'Most people DO mind, they are just letting him get away with it, like I'm about to do. You need to make sure that support and training are done properly.'

To the man who hit me: Stop hitting people! People don't like it! I DON'T LIKE IT!!!'

Then he said a word, slowly, that I understood, 'Sorry.'

People with intellectual disabilities have a right to learn how to behave in the community. Their disability doesn't give them a 'pass' for aggressive or assaultive behaviours. Trouble is, most staff think the behaviour is simply 'inappropriate' rather than what it is ... 'criminal.'

It's the next morning and I still have red marks from where I was struck by this guy. Shit.

UnUnFriended

You know the feeling. Someone has used the 'R word' or has used 'tard' as in combination along with another word and you, because you promised yourself you would, know you have to speak up. A feeling of 'oh shit' I'm about to be tagged as 'over sensitive' or 'insensitive' or as the 'word police' or as 'against free speech'. I'm about to be told 'I didn't mean it that way,' or 'I wasn't referring to people with disabilities' or 'you are taking it the wrong way.' And, of course, I expected to be 'defriended' virtually or 'unfriended' socially. But, that's the shit that goes with the territory.

So, in response to someone's comment using a combo word, on the topic of gay price, I wrote this:

I work with people who have intellectual disabilities, who until very recently have had their sexuality monitored, their relationships destroyed, their bodies subjected to surgery without consent to eliminate the possibility of parentage, lemon juice shot into their mouths - or contingent electric shock to stop them from even masturbating. The use of the word 'tard' in part or the longer 'R*tard' continues the idea that this is a group that it is acceptable to hurt, harm and disparage. I would suggest that if we want it to 'get better' for those in our community subjected to bigotry or bias we may want to act in ways that communicate we respect and support others also struggling to find acceptance and safety within society at large.

Imagine my surprise, then, to find that I wasn't unfriended. In fact the person whose facebook page this happened on called me a 'lovely person.' I almost fell over dead at that reaction. I expected, and am used to, some kind of debate wherein I'd face a shitstorm of reaction.

Imagine my further surprise when the person who wrote the comment to which I responded. Flat out apologized and said:
 
Dave: you're absolutely correct. I apologize for my poor choice of language and insensitivity. I should know better.

Who ARE these people??

I can say, definitively, that in all my years of challenging the use of disability disparaging dialogue that I've never, once, had this reaction.

Never.

Once.

Ever.

But ... I liked it.

It has always seemed obvious to me, as a person who grew up being called a 'gear box' (I never understood that one) or a 'pansy' or a 'sissy' or any number of names that calling someone a name or using someone's identity as a put down was simply wrong. Obvious. Yet, I'm used to having to defend my defence of something indefensible.

Not this time.

I immediately liked the person, who I do not know, who apologized. They are obviously very cool if they can react calmly with apology when called on something. I immediately respected the person whose page this happened on who immediately supported me and my expression of opposition.

Who ARE these people?

The only answer can be - decent, thoughtful souls.

Debating Words

Last night we went to the mayoralty debate on disability issues. On the way there, on WheelTrans, we picked up another fellow going to the debate. He and I chatted about issues around disability and politics and identity. We spoke disabled man to disabled man quite comfortably, it was an interesting ride and a great way to spend time when stuck in downtown rush hour traffic.

During the debate itself we heard the candidates say pretty much what you'd expect them to say when trying to win votes from a specific group. I did find myself impressed with a candidate that I hadn't planned on voting for and am considering switching my vote as a result so I'm glad I was there to hear what everyone had to say.

However, something really annoyed me, after the planned questions were asked, one of which was one that I had submitted, there were questions from the audience. An audience member, I could not see if they had a disability or not, insisted that the candidates not use the word 'disability' but 'different abilities' instead. Based on that one person's statement the candidates struggled to comply, their answers becoming more laboured with this new, and unfamiliar term to them, being artificially stuffed into their thoughts.

I was seething. Why is there always the assumption that one speaks for all? I don't like these kinds of ways that we verbally euthanize the word 'disability'. Disability is, it simply is. On the bus we spoke, my fellow rider and I, about the disability community - it wouldn't even make sense to talk about the community of people with different abilities - what the hell would that mean.

I HAVE A DISABILITY.

I AN A DISABLED MAN.

I AM A MEMBER OF THE DISABILITY COMMUNITY.

There is no shame, in my mind, with those statements and I don't need people to verbally tiptoe around who I am and the identity that comes with the territory.

Good God at a debate of disability issues the word disability suddenly became unwelcome. How freaking odd is that?

Here, Now

I was at a meeting the other day where one of the speakers was saying that some of the work had been put on hold because ...

because ...

because ...

the self advocate who is part of the team is on her honeymoon.

The meeting went on but that simple statement was swirling around in my head. I had trouble focusing for a moment or two.

I couldn't help it.

Simply couldn't.

I sank into history.

Remembering the dark times of institutionalization and gender segregation.

Remembering the dark times of community agencies with policies that forbade relationships.

Remembering the dark times of parents who fought to forbid their child ever loving another.

And though I know ...

deeply know ...

That these times are not over.

That there are many battles yet to fight.

That there are those who still forbid, still punish and still tyrannize the beating of another's heart.

But here, now, she is on her honeymoon. And we have to wait, for her to get back, for the work that belongs to her to be picked up again.

Here, now, a heart beats and a pair of hands has meaningful work waiting.

Joe and Dave In Paint: The Church Street Murals

Thirty five years ago, as we were approaching our 10th anniversary, I decided I wanted to give Joe an unusual and unique gift. We both were avid readers of 'the Body Politic' which was the lgbt news magazine of the time and I thought that I'd like to put an ad in the paper wishing Joe a happy anniversary.

It wasn't as easy as it might seem.

When I approached them with the idea, by then I determined that I wanted to buy a fair sized ad, the request was met with some reservation. This was long before people rallied around the right for 'gay marriage' and there were some in the gay community that were actively hostile to the idea of marriage and who felt that gay people needed to redefine the nature of our relationships rather than simply 'aping' what heterosexual couples do.

Needless to say there was a lot of discussion about the ad and the politics behind it. I persevered and participated in the discussion not knowing if they would, in the end, publish the ad. I'm not sure who eventually made the decision that the ad would run, but the decision was finally made. When it came to the design, I wanted it stark and simple. There was a grey background and centred in the space were two lines of text, "Happy 10th Anniversary, Joe" and "From Dave".

When the issue came out I picked it up immediately, Joe and I were out having a beer in the gay bar that we frequented at the time, Buddies. I gave Joe the paper and watched for him to find the ad, he did, he loved it. Still one of the bests anniversary gifts that I'd given him.

Our anniversary is on June 29th. Given the length of time that we've been together, our anniversary pre-dates gay pride day which is now celebrated with some abandon. As it turns out that date is often the date where the world celebrates pride. This year World Pride happens in Toronto on our 45th anniversary.

Yesterday we received a call from someone we'd known many years ago, he told us about an article in Xtra magazine about the murals that were being painted around Church and Wellesley as part of preparations for World Pride. He then read to us about a mural that was based on research done by the artists. They'd gone through old Body Politic magazines looking for inspiration and found our anniversary ad. That gave them the inspiration for a mural.

So we looked around for and found an interview with the artists where they talk about the ad and their art. We've also left a comment on the Church Street Mural Project Facebook page. Our hope is to thank the artists for the coolest 45th anniversary present we could ever get.

What has been the nicest thing about all this is, of course, the remembering. Joe and I spent much of last night, after Walter's call, chatting about the ad and the times. We talked of Buddies and our hours spent there, of old friends long past and of a time where we were finding our own way, as a couple, through the various worlds in which we lived and moved.

Our anniversary approaches but we feel the celebration has already begun.

Class Dismissed

At the end of last week I had to go to a long waited for appointment with a specialist - nothing serious, just a continuation of the work on getting my leg back to better health. We sat in the 'waiting room,' never was a room more aptly named, and waited. When we were called we went to the room that was indicated for us and shortly afterwards a small troop of people came in. Introductions were done, two of the people in the room were students and my permission was sought for their presence. It was given.

In the discussion I was asked by a woman taking volumes of notes what I did for a living, I told her. She wrote everything down and said, "I meant 'what do you do now' not 'what did you do before the wheelchair.'" I told her that 'now' was the same as 'then'. "Oh, she said, "that's good, so many people give up after they get into a wheelchair." "Oh," I said, not knowing what to think about what she said and the assumption that she had made that I had, or must have, 'given up.'

When, for a brief moment I was left alone with the two students I took the opportunity to talk to them about attitudes and assumptions and that they need always remember that their patients were people. They didn't really take me seriously, at first, because they seemed to think that the idea of the humanity of patients was something that was so obvious that they'd never lose sight of that. I told them that, as someone who works in human services I could testify to the fact that it is quite possible for human service to become inhumane because those that do to, for get that those they do things to are fully and equally human.

"For example," I said, "when I rolled in here, what was your first impression."

Neither wanted to tell me.

"See," I said, "you saw and you categorized and you now don't even want to own up to what happened in your head. It's easy, too easy, to dismiss people as people. Try not to do that."

Then the team came back in with more papers and recommendations and it all went along smoothly.

I always say 'yes' to students, because I figure if they are there as students then need to learn that their teachers aren't always the ones wearing green or white.

A Bit of Marital Advice

I didn't say it to be mean.

I said it because I felt a responsibility to do so.

We'd been short of cash and, as we walked to the subway, we noticed a branch of our bank on the far corner. I told Joe I'd rush ahead, cross the street, get the money and then come back and meet him at the subway elevator. He nodded and I was off like a shot. There was no line up at the bank machine so I was done quickly and when I got to the corner, I'd just missed the light. So I just parked and waited.

A group of friends, two young couples, came to a stop beside me, also waiting for the light. One of the young men noticed me. A fine looking fellow, with an equally fine looking girlfriend, looked over at me and then leaned and said something to his girlfriend. She gently slapped at him while he laughed. He saw me notice this and so he said, "I just told her that you look like Jabba the Hut only fatter." He found this hilarious, me I've heard it before, often. She looked everywhere but at me, she was blushing wildly.

I said nothing to him but leaned over to speak to her.

"Promise me you won't marry someone who is needlessly cruel to a stranger. God forbid this man ever have children. Abusers give hints before they give hits."

She looked at me shocked.

The light changed.

I sped across.

When I got on the elevator with Joe he asked, "What was that guy yelling at you on the crosswalk?"

"I was just doing some pre-marital counselling and I hope it worked."

Dead Centre

I am blocked.

The fellow in front of me is standing right in my way, leaving no room to pass on either side of him. He has centred himself such that the space he uses makes all other space unusable for people, like me, who use wheelchairs. Even for others who need to get by, others who walk, they have to twist themselves to make it passed him. He is with friends and they are all talking, animatedly, about the upcoming weekend. Laughter fills the area. I ask him, twice, at increasing volume, to please move over a bit. He doesn't hear me. Finally someone in his group does, she reaches over, pulls at his shirt, he is startled into awareness and turns to see me. He laughs, bringing me into the party, and says, "Sorry, I was overstimulated by all these little bottles of rum," he shows me several tiny bottles in his hands. As he moves aside I am laughing with him.

I am blocked.

The fellow in front of me is standing right in my way, leaving no room to pass on either side of him. He has centred himself right in the dead centre of the cut curb. The cut is narrow, not like some of the generous ones where I could easily get round one person standing. He is listening to music and texting on his phone, I call out loudly several times. There are people around, they turn, notice and turn away. I am in the street. It's a busy one and the light is changing. Finally, and it's always my last resort, I reach up and touch his shoulder. He swings round at my touch, anger in his eyes, he sees me, understands instantly, the requests and steps back letting me pass. He says nothing. I scoot by.

I am blocked.

The fellow in front of me is standing right in my way, leaving no room to pass on either side of him.
He is standing, reading a text or an email, in the middle of an aisle. I ask for room to pass. He doesn't respond. I ask again. He doesn't hear me. I look to see if there is room for me to turn around and go to another aisle. There isn't. I am about to reach out to tap his shoulder to get his attention when someone coming the other way, taps his shoulder. He looks quickly from her to me. This time the anger that enter his eyes doesn't leave. He says something so cruel that I choose not to write it here. The other shopper is shocked, I am not. There is a moment where I know that the decision is being made regarding what happens next. I have no control over what happens next. He decides to say something hideous to her and something threatening to me. The space is now free.

The stress is in the not knowing. A social situation that begins the same way every time has vastly different outcomes. It is impossible to predict how the negotiation of the use of public space will go. It's impossible to tell what the outcome will be. In these three examples, all recent experiences, the other person was male - it's even trickier when the other party, the one blocking, is female. Reaching out to touch another guy is very different than reaching out to touch a woman. Shoulder or not, the touch can be received very differently.

The stress is in the not knowing. While I have never been physically struck, it's been close. A woman reacted badly to the touch on the shoulder, her husband rose in defence of her. I got away only because I had the wisdom to disengage and to flee with my apology in the air behind me. My disability requires me to have interactions with more people than I would otherwise. I speak, on an average sunny Saturday, to probably 50 or 60 people as I make my way along a crowded sidewalk. Most times nothing happens.

But it's the not knowing.

The not knowing leaves me tired to the point of exhausted upon return home.

New Tool Available: Blog Announcement

New Tool Available

The Tool for Assessing Levels of Knowledge - Home Alone (TALK - HA) was developed because of a request made of the clinical team at Vita. One of our members wanted to have time, at home, alone. A simple request from someone who has nearly always required 24 / 7 support for a bit of independence a bit of privacy. The question simply became 'does this person have the skills to be on their own and if they don't what skills would we need to teach?' Thus the TALK -HA was born. The goal was to develop a tool that could specifically pinpoint areas of training necessary for an individual to be able to have time alone. As the assessment was being developed it was recognized that this could be used in a variety of different ways to meet different needs. Vita Community Living Services along with The Center for Behavioural Health Sciences worked as a team to create this document and, again, agreed to make it available, freely to those would feel that the tool may be helpful in their work to support people with disabilities to live the most freely and most independently that they can.

To recieve a copy, please email dhingsburger@vitacls.org and ask for the TALK-HA and it will be sent to you.

Dave Hingsburger
For the authorship team headed by Donna Lee

Gray Sweats

Many years ago, as I age I lose the capacity to place things in time so am left with only the choice between 'many' and 'a few' - in this case 'many' is really apt, Joe and I campaigned for George Hislop when he ran for city council. George had a high profile as an outspoken advocate for gay rights and was considered by many as one of the leaders of the gay community. He also had a passionate love for the city and knew it well. He served on important committees and was often consulted for his point of view on various issues.

Knocking on doors was part of the job, one that makes everyone pretty nervous, but we did it diligently. Those who answered broke down into thre categories: those that called him and us 'F*ggots' and slammed the door; those that would glance out and see that we were political campaigners and slam the door; those that would talk with us. In that third category were gay people who would talk about George and their hopes for his election. That third category also held others who were disenfranchised, others who understood why this was important to us and what George's election, should he win, would mean to us.

One of those people was a man with a disability who answered the door sitting in his wheelchair. He was dressed in gray sweats and had a sardonic smile. He put us through our paces by asking some questions about policy - we were thankful to have paid attention in our training and were able to easily answer him.

At the end he said, "Yeah, I'm voting for George."

He said it so casually, almost like he knew our candidate, so I asked, "Do you know him."

"No," he said, "I don't. But I know prejudice and discrimination, my vote can do something about that, so I'm voting for George."

George did not win that election. But his standing and his credible showing indicated that it was possible for someone identified with the lgbt community could run and could win.

I thought of that fellow, in that wheelchair, last night watching the MPP in my area, an openly gay man, win, and seeing Ontario elect an openly lesbian woman, win.

To be fair, no one throughout the election made Premier Wynn's sexuality an issue at all. It wasn't spoken of by pundits, or mentioned during the coverage last night. It was almost like a non issue.

And why?

Because people like George ran in a time where the police asked him to wear a bullet proof vest when he spoke - George never did.

Because there were people who understood that a vote could do something about prejudice and discrimination.

To that guy in the wheelchair and the gray sweats - thanks - You find family everywhere.

Every Where

We'd just seen a movie and were exiting onto a very busy street. People we swarming every which way. It took me a second to get my bearings, steering a large wheelchair carrying a large me isn't always as easy as it looks. After I got going I noticed a man, a very, very, very, thin man. A tall, thin man. He wore a light blue suit, used a light blue cane, walked in light blue shoes which matched his light blue hat. He walks slowly, very slowly, he looked like a sliver of sky trying to make it's way through a crowd that only recognized clouds.

In the time it took me to fall in behind him he'd been jostled twice by those rushing by. I made my decision when, on the second time, he nearly fell. The blue cane matched his clothes but met his needs and held him long enough for him to get his footing. I pulled up behind him, matched my speed to his. Now, like a breakwater, the flow of people had to go around me and he walked calmly on.

He crossed the street, people now seeing him, tall and thin and very blue, and me, behind, large and squat and very determined. Once across he headed towards the bus stop. Once there, I turned to leave, glad that he'd safely made it there. It wasn't until he spoke that I realized he'd known I was there.

"You find family, everywhere," he said, "Every where."

Out But Not Quite Up

Well.

Didn't that just knock the stuffing out of me?

Today's my first day up and scheduled to be back at my desk. I'm looking forward to going in, seeing people, and being part of the flow of things at the office. As one might anticipate, I've not been out doing much stuff, or actually, any stuff, so I've not had much to write about.

Well, I'm back and expect to be blogging again, regularly, in a day or two.

Thanks for your patience.

Training Announcement

Sex, Sexuality and Sex Education - a four day training - is taking place on July 10, 11, 17, 18 in Queensville, ON. I'll be offering this through The Center for Behavioural Health Sciences and for information you can contact patty.barnes@mackenziehealth.ca . I don't offer this program very often so if you are interested, nows the time.

Feeling Icky

It's sunny outside.

And I'm sick.

It started with a really sore throat.

Now it's the sniffles.

For as much as people think that people with disabilities are sick all the time, I don't actually get colds all that often.

But as such, I'm going to take a few rest days. I won't be here until I'm feeling a little bit better. I don't want the temptation I have, when sick, to whine and moan, to become the tone of the blog.

Wishing you all a better weekend than I'm going to have.

The Conversation: The Implication: And Danish in Heaven

He is thirty years old.

He had Down Syndrome.

He doesn't want to die.

He is telling me that he has to have a fairly serious operation and that he's really afraid. I understood, and told him so, operations are scary things. I've had my fair share and they always involve risk. So we chatted. Just chatted. He was please, I think, that I didn't brush his fear away, didn't try to tell him to NOT feel what he was feeling. As affirmation and validation often do, he opened up and talked to me about his fear.

He wasn't afraid of dying because he fears death.

He has faith and believes he will simply go to heaven.

He doesn't want to die for a different reason.

I know, as he tells me this, that at that precise moment, some family is being advised about the tragedy that a child with Down Syndrome will bring to their lives. Someone who knows about disability from a book, will take fearful questions and, in turn, make terrifying predictions. The list, the dreadful list of lies - the 'he will never ...' list, the 'she won't ever ...' list will be given followed by the 'best option for you ...' list - the list with only one choice will then be handed out.

I love my girlfriend, we are getting married next year.

I love my job, they treat me really nice at work.

I love my apartment, I like living independently.

He doesn't want to die because he hasn't had enough of the life he is living. He doesn't want to die because he wants more ... more time to enjoy being here and being him. He looks forward to the morrow, he anticipates the future, he expects that life will continue to be full of joys and sorrows and the wonderfully unexpected.

I love my mom and dad, I want them to be at my wedding.

I love my mom and dad, I want to surprise them at their anniversary.

I love my mom and dad, I want to show them how much I love them.

Denmark has stated that they will be Down Syndrome free by 2030 and the announcement was made as if they have achieved some kind of great accomplishment. The eradication of Down Syndrome is made possible by ignorance about Down Syndrome and about Disability. I am thinking of this as they young man is speaking to me. A young man full of life who wants more life. A young man who doesn't, as the geneticists may think, mourn his own birth.

Do you think I will have Down Syndrome in heaven? he asks me. I asked why he was asking the question and he said that he'd been told that there wasn't any disability in heaven. As I believe that in heaven the common language isn't Danish, I told him, I think we will all be who we are, really are, when we get to heaven.

Good, he said.

You read that right.

Good, he said.

Finally, A Smile

We stopped at the pub after doing a wee bit of shopping. When we entered we saw someone we hadn't seen for quite a while. We've not actually been friends, but we've been in the same circles, knew the same people, and, on the occasion we ran into each other, it's always been friendly. So we took the table next to him, said 'hello' and bought him a beer as he was nearly done the one he was drinking.

Bars, or the environment of bars, make it fairly easy to fall into conversation with someone. We all caught up on what we were doing, where we'd been and how we were feeling about the weather. He briefly, when chatting, mentioned the name of someone from our long ago past. We had very much lost touch with him, but often wondered whatever happened to him.

We all reminisced about how, in the past, the fellow from the long ago past, was wild and witty and quite wicked. In fact, he had a brutal sense of sarcasm and could leave a scar on someone's self esteem at 50 paces. Joe and I had been in his wider circle for a long time but we began to pull away because, while we could see much good in him, he became increasingly more angry. It was hard to see where the anger came from, it was hard to understand his need to tear others down ... life had given him so much. Over time, we simply saw him less and less.

And then, not at all.

We'd hear about him, of course, from mutual friends. Where he was working. How he was doing. Who he'd skewered with words and wit. So many people wanted to like the part of him, that we could all see, was lovely and gentle and kind. But, whoa, that inner anger, inner unhappiness - it was hard to get by.

Then we heard about him no more.

No one we knew saw him.

But we still thought about him..

So when we ran into someone in the bar that brought up his name, we were beyond surprised. Our bar friend started to whip through pictures on his phone saying, 'You've got to see a picture, you've just got to see a picture.' Then he found it and said, "Trust me, you're not going to recognize him."

He handed the phone to me first.

The picture was of a woman, quite a beautiful woman. I would not have recognized the person I knew. Not because of the dress, or the breasts, or the hair, or the make up ... I wouldn't have recognized him because I realized, when looking at the picture, that this may be the first time I saw a genuine smile on her face. She seemed happy. Not just 'taking a picture' happy, down deep, bone deep, happy.

Inside I was bursting with joy for her.

He had told no one about his inner conflict or unhappiness.

But now, she is the woman she was meant to be.

And I could tell.

Because of one helluva smile.

The Beauty and Power of Yes

The song started as soon as the movie, Maleficent, ended. Sadie turned to first Joe and I and said, "I am going to go and dance." Then she slipped over to the stairs and headed down to the area directly in front of the screen. We were in an IMAX theatre, so there were quite a few stairs. She carefully made her way down.

Once she was in place she started a slow dance in time to the music. The theatre lights had come up, softly, as they do when the credits are still rolling. One of those lights was directly above where Sadie was dancing. It looked as if a very soft and very loving spotlight had been placed there, with the specific hope that a child would come to dance.

The song was 'Once Upon a Dream,' which was from the original Sleeping Beauty film:

As Sadie dance, Ruby surprised us by starting to sing, knowing the words to the entire song. It would only be later that we found out Ruby had seen the original film so often that she'd come to know the words.

So Joe and I sat and waited as Sadie danced and Ruby sang. It was a simply magical few minutes. A young woman, who had come down the stairs, stopped beside me and listened to Ruby's voice, strong and confident in the lyrics and watched Sadie do her slow rhythmic dance. As it was drawing to a close, and there was a smattering of applause from the audience remaining, she turned to Joe and I and said, "Most parents would have said 'no' to her going down to dance and would have hushed the singing. I didn't know if she was correcting us or simply making an observation. So I said, "Sad, isn't it?"

She said, "Yes, I think so."

I have worked for too many years with too many people for whom the word 'no' was autocratically applied to situations where 'no' was neither necessary nor needed. If I've learned anything it's that 'no means no' but that 'no' can also be a word used to oppress and to suppress. 'No' is where we came from, 'Yes' is where we want to be.

The kids don't know that they came into our lives at exactly the right time. For them. And for us ... because we got to see a lovely song and dance act that we will always remember.

Exactly

As the credits were rolling, so was I. I stopped to watch for Sadie, who was coming up the stairs towards me (more on that tomorrow). I heard the sound of struggle and turned to see a woman with a disability struggling to get out of her seat. She had sat in the seat right behind a railing and was using it to help her rise. I turned away, I don't like people watching me when I'm struggling and I'm pretty sure she wouldn't like it either.

But even with turning away, I could hear that she had fallen back into her seat. Her breathing was rough and ragged. I didn't know what to do. Then I thought, 'Yeah, I kinda do.' I rolled over to her turned my chair so my strongest arm was the one most available. I said, "I have a very strong arm. It gets it's strength from pushing myself around in my other wheelchair. Would you like to use it to help yourself get up.' She smiled. And thought.

Then she said, 'I sit here so I can use the railing. It's still hard, but I can usually get up.' I said, 'OK,' and then before leaving, 'Did you like the movie?'

She said, 'Could you stay with me for a moment, we can talk about the movie while I continue to try and get up?'

I said, 'Absolutely.'

She took a couple of tries more but managed to get herself up. I didn't offer again, because she had said 'No.' And, in all ways, 'No means no.' She did love the movie and she chatted about the big scene and I admitted to her that it made me cry.

Sadie was up and beside me now and, as the woman was standing, I wished her well. I joked, 'I guess you didn't need my arm after all.' She laughed.

As I was pulling away, she called to me, 'I think you got it wrong. I may not have used your arm, but I used your strength. Thank you.'

As both a person and as a person with a disability, I understood exactly what she meant.

Exactly.