The Symbol

Photo Description: Wheelchair access symbol going up a ramp with a directional arrow below.

 Joe and I spent the Labour Day weekend doing nearly nothing. We went out every day for at least 20 minutes, as we had to say 'hello' to the world, and both of us need to feel fresh air on a daily basis. But for the most part we celebrated Labour by avoiding it at all costs. Much of our days were spent binging on post apocalyptic televisions series. We like those. Mowing down zombies is perfect fodder for relaxing the brain while contemplating how tasty and organ it must be.

We took a break from the zombies, as one must, and watched a couple episodes of a murder mystery series we've been watching over the past many months. There are a lot of seasons and a lot of shows, so we know the characters well. But then something happened while watching it which shook me up just a little bit. One of the characters was standing on a sidewalk outside a building, she was bantering with her partner. A very typical scene for the show. But I noticed over her shoulder a wheelchair access sign. It had the wheelchair symbol, the blue badge person, and an arrow underneath it pointing, presumably to the wheelchair entrance of the building.

That was it.

But I've been watching this show over several seasons. Several. I've never seen a disabled person in it. Not as a main character, something I'm familiar with, but, and maybe more importantly, not even in a background shot. You know the 'people milling around' shot or the 'people walking by' shot or even the 'people gathered around the police tape' shot. Never. Not one.

I thought through most of the television shows that I've seen and, again, I can't recall m/any where someone with a visible disability just happening by. Just being part of the crowd. No crutches, no walkers, no wheelchairs.

I don't need to watch zombie shows to see a post apocalyptic world. I see it in every show. People with disabilities, disappeared. The symbol, the person in the chair, is like a hieroglyphic, it represents people who don't exist any more. In TV world maybe we've all been 'mercyied' away. In TV world maybe the ugly laws are back and we are shut away from the camera's eye. In TV world, they'll show the symbol but not the people.

On the bus this morning, we had several pick ups and drop offs on my way to work. It was comforting to see, we still are here. We still exist in the world.

That symbol is only a symbol.

Not a sad reminder.

Of a people gone missing.

Labour Day: Alchemy - Revisted

I have been asked several times today to repost this from last year in acknowledgement of those who work for the freedom of others:

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

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

Seeing her was good.

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

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

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

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

They work today.

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

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

So today.

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

Reluctant Jars

Photo Description: Two hands, one cradling a jar of pickles, the other taking the top off.

Yesterday we were in the lobby waiting for the elevator. One is off service, waiting for parts to arrive. Another was being used for someone moving in. The remaining one is alone in service of 27 floors. When the elevator doors opened I moved towards it, pausing to let an elderly woman off, but then noticed that it was continuing down to the basement.

The woman was holding in her hands a brand new mop head. She headed over to the security desk and asked the guard, a woman about my age, if she had strong hands. The guard was taken aback by the question and didn't answer. I spoke up, "I have very strong hands."

Everyone looked at me. The lobby was much fuller now, many waiting for one elevator. I said, "I'm in my power chair now but I push myself in my manual chair, I have very, very, strong hands." The elderly woman said, "Could you help me with this?" She handed me the mop head. "The mop has to click into place here," she said said pointing to where it clipped in, "I have tried and tried, but I can't get it in."

I took it from her and looked at it. I put my fingers on the rim of the mop, and pressed, hard. There was a resounding "CLICK" which echoed in the lobby. There had been a fair bit of resistance but, then, I have strong hands. I looked it over and saw one other part than needed to be pressed in place. I did the same thing there and it was done.

She looked at me, shocked. "You did that so easily." I told her again that I use my hands to push  myself, and I'm not light, down hallways and through parking lots, my hands are very strong.

The elevator arrived, Joe got on, as we were next in line, she got on and I backed in. We rode together upstairs. "Do you think I could bother you every now and then when I need strong hands?" she asked.

"Yes," both Joe and I answered together. We gave her our apartment number as I told her that I was expert in opening reluctant jars.

"Funny," she said, "I wouldn't have asked you."

"Yeah, I understand," I said, "people tend to think I'm disabled all over."

"How wrong we all are," she said, and wished us a good day as we got off the elevator.

On the way down the hall Joe said, "You earned lots of brownie points today." And I did, because, I've got strong hands.

'they' and 'them' thinking

I panicked.

He had seen me, waved as I waved back, and then looked north and stepped off the curb. The traffic flow wasn't exactly heavy but it was steady. He was now in the middle of the road. Standing on the yellow line, looking south.

I saw a huge truck heading up the street.

I was sweating.

The truck passed, there was room for him to make it all the way across. He stepped on to the sidewalk beside me.

I felt like I could breathe again.

I joked about being freaked out when the truck came north. He laughed and said, "It was big, wasn't it?" We then chatted about what he was doing downtown. He told me he was doing some errands for his mom and, in fact, was heading down to the bus station to catch a bus to visit her where she lives in a small city about a mile north.

We shook hands goodbye, I told him how nice it had been to see him. He wished us well and was off.

Some of you might have guessed that the man I was speaking to has an intellectual disability. I worked with him many, many years ago and now occasionally run into him on the street. Back when I worked with him, he wasn't allowed to be in the community on his own for a whole variety of reasons. But, he's in the community now, alone, and doing fine.

My problem is that I still have a bit of  'them' and 'they' thinking. If any other of my non-disabled friends had crossed the street in the same way. I wouldn't have had any reaction other than, well, waiting. In fact  I've crossed the street in similar ways in my power chair, I jay walk all the time. It's simply a city skill. Even though it's against the law, and even though it's more dangerous than crossing at a stop light, I do it and know I will continue to do it.

In just the way he did.

He did it as safely as it is possible to do.

He did it confidently as if he's done it a lot before.

Why did I immediately think about his decision and his safety in a different way than I would have ANY OTHER OF THE PEOPLE I KNOW without disabilities? Because of 'them' and 'they' thinking.

"People with disabilities, they should cross the road safely, following all the rules of the road."

"People like them may not recognize street hazards in the same way we do."

When I write those things down, they are ridiculous.

They don't seem ridiculous when I think them.

But.

I'm proud of this: I kept my mouth shut. I treated him like I would have treated anyone else.  He didn't need a lecture. He didn't need to be told he wasn't competent to do what he just did. He needed something from me.

And I gave it.

Respect.

When There Are No Words

I was just checking my email before settling down to write a blog post for today. I was knocked of my pins when I read an email from a colleague who is fighting the battle of his life with lung cancer. The prognosis isn't good.

Suddenly.

I have nothing to say.

The Alchemist's Tool

It's funny, what's funny, years later.

Last night, walking back home, I found myself telling Ruby a story from my high school years. It was a story about a moment of acute embarrassment that happened because I did something in a desperate attempt to fit in with the other boys. I wasn't telling the story with the intent to educate or illuminate any point. I was telling the story because it really fit with the moment and with the conversation.

I'm not going to relate that story here, it needs a context to be understood as funny. I never thought that I'd tell that story, ever. And I never thought I'd tell it and laugh. But I did. I told it. When I got to the end of the story - the punch line. Ruby burst out laughing. So did Joe. And oddly, so did I. It got funnier and funnier as we walked and our laughter filled the air around us. Passersby smiled wondering what on earth had been said or what on earth had happened.

I need to remind myself, on occasion, of the Carol Burnett quote: Comedy is tragedy plus time.

Time isn't just a healer.

Time is an alchemist. And humour is it's tool.

After I got in bed last night, I thought about that moment, in high school, where I wished I was dead. Where I had embarrassed myself - no one had done it to me. I'm betting that none of the people who were there at the time remember it at all. The thing that I thought was so big and so vast and so devastating became what I never thought it could. Nearly forgotten.

And miraculously, really funny.

The Fence

Every day, after summer camp, we pick the girls up and head straight for the ice cream truck. This is a wonderful part of the day because Ruby and Sadie are full of stories from the day, telling us all they've learned, all the crafts they've worked on and about who dodged dodge ball best. Yesterday, after cones were eaten and stories told, it was time to walk home. Joe and I have decided that we'd walk home a different way every day. There are many routes, there's no need to use only one.

Our route took us back by the ice cream vendor and the entrance to the camp. Along the sidewalk there is a low fence, set a perfect sitting level, where people who get ice cream or hot dogs often sit to eat and chat. We had gone to the front of the building to sit on the seating provided there. Most people were gone and no one was sitting on it. Sadie was the first to decide to jump up on it and walk along the narrow bar. She waved Joe over, took his had for balance and then, like a tight rope walker, carefully made her way forward.

Ruby, thinking the idea was a good one, jumped up too. She's a little older and she has tremendous balance so she didn't need to hold hands. She wanted me to ride close by her so she could reach out and grab my shoulder if she felt that she might fall. I pulled my wheelchair up close, Ruby stopped, touched my shoulder and said, "That's perfect!" Then she set on her way. It's a fairly long fence with a couple of turns but Ruby only needed to used my shoulder twice, both times to momentarily regain balance. The rest of the time I concentrated on simply going along side, shoulder ready at any moment.

As I watched Joe and Sadie, a few steps ahead, and glanced at Ruby concentrating on her walk, it felt wonderful to be in their lives and trusted to be there to make hard things easier, to make risky things safe to try. It's an amazing thing to be freely and easily handed the trust of a child. I felt honoured, I could see Joe did too.

But as we walked, I thought of the work that we do, those of us who work to support people with disabilities. This is what we do, isn't it?

To be the 'shoulder' when a 'shoulder' is needed.

In any way that it is needed.

Both Ruby and Sadie were thrilled to make it all the way to the end of the fence. "I didn't think I'd make it ALL THE WAY!" Sadie said excitedly. "I didn't fall once!" Ruby said, proudly.

It's amazing how far people can go, when they've got the right support.

Service, Support and Success: September Issue Released

Update:

The new issue of Service, Support and Success: A Newsletter for Direct Support Professionals is out. This month looks at 'the power of a growth mindset' ... If you'd like a copy or a free subscription, please just email me at dhingsburger@vitacls.org

Today's blog follows.

!!!HNY!!!

This is such a nostalgic time of year for me. I imagine that there are those, like me, who find September and the beginning of the fall season more like 'New Year' than 'New Years.' September for so much of my life was the start of school, in Salmo then in Campbell River, then in Victoria, then in Toronto. I loved the sense of a new start, I loved the nice clean books with pages left blank for me to fill with notes, with drawings and doodles, and with, tucked in margins, hopes and dreams.

We were walking through the U of T campus near us and saw all the young students rushing off to destinations they hadn't found yet - not realizing that this would be the way it will be for their entire lives. We saw parents teary goodbyes, we saw boxes and boxes and boxes of Kraft Dinner. Excited chatter contrasted with solitary anxiety as various students with various ways of dealing with change unloaded cars and vans and trucks.

It's hard not to envy them. It's hard not to wish to be amongst them and feel the feeling that the life yet to come holds so much promise and so much uncertainty. Even though I like the life I'd leading, I like the direction I'm going, I like the predictability - inasmuch as it can be - of my life. I know where I'll be in November - giving a keynote in California. I have a calendar and there are all sorts of things listed to do, people listed to meet, reports listed to be written, meetings listed to be had, travel listed to be done. I'm good with that.

But. Still. I kind of like the idea of a new start, of blank pages, of pens yet unclicked.

So for those like me, who are feeling this feeling.

Happy (Real) New Year

A Different Day

Yesterday I faced a decision. Buskerfest, which is an event that I love, was happening. We weren't able to go on Saturday because we had other things that needed to get done. We'd been away for a few days up at the lake and we had to settle back into home, so there was stuff to do. On Sunday we spoke about going to Buskerfest. I faced a decision.

As much as I love the event, I didn't want to go. It was a hot day, the crowds were out on the street and, in previous years, Buskerfest was almost impossible for me to navigate through. People intent on having "FUN! WOW"can be the most impatient and therefore quick to anger. I didn't want to get into a situation that would simply be unpleasant all the way around. There are days that I'm really up to the challenge and the people and the mood of the crowd - and there are days I'm not.

I didn't want to go.

I know Joe enjoys Buskerfest too and I didn't want to take that away from him, because even though he could go without me, I knew he probably wouldn't. I bit the bullet and told Joe that I just didn't feel up to manoeuvring my chair through the crowds. Joe, being Joe, understood and we planned for a very different, much quieter time out.

Throughout the day though, I had to stifle my concerns about how disability affects not my life, but Joe's. I try as much as possible to do all the things that I did before, even if I do them differently. But, I can't always. I CAN do Buskerfest but I have to be up for it, I have to be in the right frame of mind, I have to be feeling really confident in my chair. If any of those things aren't there, I can't. Or. Maybe I won't.

We had a nice day. I'm sure we did. We talked and we laughed and we had a wonderful veggie hot dog from a vendor a few blocks away. We sat in the shade to eat our dogs and people watch. We prepared for the girls coming down for the week to go to summer camp. We felt the sun on our backs as we walked home - something which hasn't happened often this summer in Toronto.

So we didn't go to Buskerfest.

... this year.

His Voice, Another's Words

Photo Description: Handwritten words in capital letters reading: Tomorrow you'll have to live with the things you said.

I understand the difference between coincidence and causation, I do. Even so, it's hard, sometimes, not to jump from one to the other. I'll admit, in this instance, I did.

We were on a brief vacation and though the weather was unseasonably cold the whole time, we had a good time. One day we were out walking with Ruby and Sadie, heading over the the museum, when we walked by a car filled to the brim with children and noise and chaos. Suddenly something smashed to the ground and an angry father appeared out of nowhere. "You stupid, stupid boy!!! You can't do anything right!!" Tears flowed silently down the boys face. I felt Sadie's hand slip into my own, it seemed that she had been frightened by the man's voice and felt his anger reverberate through the air. I too felt the narrow timbers that hold up my self esteem tremble as words, not aimed at me, nonetheless echoed within.

They were gone.

Car and all.

When we walked back.

Today Joe and I were headed down to do our grocery shopping. We like to go early so that the store isn't packed and the streets are quiet. We walked by a young man, sitting on the pavement where he'd slept the night before. His head was down and his voice a mumble, his face was hidden by the brim of a baseball cap, tattoos of red dragons chased each other around one leg. Just as we passed by the mumbles got louder. A block away, his voice exploded into the air. It was an angry voice, a harsh and hateful voice, his voice, saying another's words, "YOU STUPID, STUPID BOY!!!! YOU'LL BE NOTHING. NOTHING! NOTHING!!" Silence. Then. A sob.

I had change in my pocket on the way back.

But he was gone.

As if he'd become ... nothing.

Words.

Hurt.

Howdy Sailor

We were visiting the Grace and Speed Muskoka Boat Museum with the kids and wandering around looking at the exhibits. They have a newly installed 'kids zone' where the girls had had a wonderful time on a flight simulator for a small plane, working on a water table the demonstrated how locks work, and putting on a puppet show where the plot was thin until the tiger attacked the cow and ... well ... there was blood.

We came upon an 'officer' welcoming people aboard a replica of a steamship. He was a friendly looking sort:

Photo description: Joe with his arm around a life sized cut out of a sea faring captain.

I immediately thought of a fun picture to take and I got Joe over to the cut out and had him put his arm around the captain's shoulders. He did. Then looking to see that no one was around, I asked him to give the fellow a kiss on the cheek. Just as he was about to do this another couple came into the area, Ruby and Sadie were inside the replica watching a short film. I quickly said to Joe, "Wait, wait," and indicated that others were around.

Joe looked at me, quizzically, and said, "Who cares?"

He was right. I still have what I call 'closet hangover' where I worry too much about how others may respond to our relationship. We were there having fun. The place is designed to have fun. I'm sure the cardboard fellow has been kissed any number of times.

But never so well.

Photo Description: Joe kissing cardboard cut out of a sailor man.

Last Day

While there is the weekend yet to go, today is the last day of our vacation. We've been away since Monday on our annual trip up to Muskoka. This was the first year of many that the weather's not been great. It's been grey and cold and damp the whole time. We managed to fit everything in; the trip to Santa's village, the annual night out to Boston Pizza, the scavenger hunt, but we did these with an eye to the sky the entire time. Rain threatened every day and we became masters at getting out and staying dry.

A big part of being here is strolling the boardwalk around the lake. It's a beautiful walk with places that are perfect to stop, with the kids, and look for wildlife and be amazed by the nature around us. One spot is a small bridge, very small bridge, where the girls can stand on tippy toes or crouch down to look through the slats, and count ducks or heron or beaver. This year beautiful lilies are blooming amongst the pads.

I love these walks. There is something about that walk that seems to relax everyone who makes it. Since the get go, it's been a welcoming place. Everyone greets everyone else. Either a nod of the head or, more commonly, a hello and a few words of conversation. It just feels so nice. Everyone acknowledging everyone. Those with dogs are stopped often and dogs, when permission has been given, get lavish attention which they revel in.

Me, I love the fact that, on these walks, I'm spoken to, equally and inclusively, with the rest of my family. The chatter flows naturally and people seem to both acknowledge and forget my differences at the same time. I like this.

I will miss this.

When I get home.

I will miss the sense of being fully human, fully different, when we are out. I will miss having time and space where I feel safe and welcome all at the same time.

I say we come up here for the kids, but I realize, that's not completely true.

OMG put to good use

I was following the natural flow of people as we all got off the elevator. Joe and I always get off last when the small space is crowded so there were several people ahead of me, all going towards the lobby and outside. The flowing line passed by a woman, with a walker, slowly walking on our right. As we neared the lobby a woman and her friend stopped to chat, interrupting the flow and suddenly blocking me as they stood right in my way.

They saw me and indicated to the woman with the walker to get out of the way. She wasn't in the way, I was nearly by her. THEY were in the way. When the woman with the walker didn't immediately respond, one of them reached forward, past me, and grabbed the sleeve of her coat pulling it, again indicating the she was in the way. She now noticed, saw me, and moved a quarter inch to the right, she was right by the wall, she had no room to manoeuvre but she tried anyway.

The two women looked at me, apologizing for the other woman's behaviour, and then headed out. Joe was right behind me. We got out and I was fuming. I swung my chair around and said to Joe, with the loudness that anger gives voices, "Did you see that? Did you see that?" The two women who had blocked my path stopped at their car, looking back at me, questions in their eyes. They had no idea why I was upset.

"There is the assumption, always the assumption, that the disabled person is in the way. IN THE WAY|!!! That poor woman with a walker was made to feel as if she was the problem, that she was in the way. I know exactly, EXACTLY how she feels. Those two women," who were still listening, "stepped into the flow of traffic, expected everyone to move for them, never thinking that maybe it was they who were creating the problem. No they identified a disabled woman who WASN'T IN THE WAY as the problem. They TOUCHED| her, PULLED AT HER, made her the problem. What the hell is wrong with non-disabled people anyways. Why do they assume all space is theirs and any we disabled people take up is somehow STOLEN FROM THEM?"

Somewhere in that rant they got in their car. But they didn't drive away. They sat there talking animatedly with each other.

I don't know what they said to each other.

I probably don't want to know.

But I hope it was anything that follows first realization and then the words, "OH MY GOD ..."

Fred and Me

Photo Description: Fred Flintstone holding a steaming foot after he'd used as brakes for his car.

It was colder than we expected it to be. The skies threatened rain. But we were undeterred, we headed off to  Santa's Village for our annual pilgrimage. We've been going since the Ruby was a toddler and Sadie a babe in arms. We got there and found that there were fewer people than in previous years, kept away by the cold I imagine, and we and the other families there had the run of the place. We started with the girls taking 16 rides on the roller coaster in a row. They'd get off, get in the short line up, and go again and again. It's wonderful seeing kids so happy.

I love going there for a couple of reasons. First, and most importantly, it's an amazing place to take kids. The admission pays for the rides so there's no fuss, no line ups to buy tickets, no hassle with keeping track of or counting out payment once inside. Second, it's a lovely place for adults. It's like taking a stroll through a beautiful park while the kids burn up energy darting from place to place.

We crossed over to Elves Island and found that they'd installed a new climbing devise and Ruby and Sadie were braving it. We watched as they traversed various challenges ten feet up in the air. They were completely absorbed. And that's when the rain finally began to fall. This was our last stop in the park anyway so we were about to head back to the van. We spoke to Mike and said that we'd head back and get in the van, as it takes time, and he could follow with the girls once they'd done their adventure.

At the gift store there is a longish ramp down to the walkway out. I've done this every year, no problem. But this year, I didn't take into the equation that the ramp might be slippery. I headed down as I usually did, and about half way down, I lost control of the chair, it tipped forward off it's back wheels, and I began to slide. Panic took over and I shot my leg out, being tipped over I could easily reach the ground with my foot. I Fred Flinstoned the chair using my foot as a break. Now, I don't wear shoes, only socks, so I could feel every bump on the ramp, Pain shot through my body but I kept my foot there until it had slowed the slide and my chair fell back into proper position.

When I was at a stop, Joe rushed up to me, having watched all this, which took only seconds to happen. I told him my foot was screaming with pain. The friction between my sock and the ramp must have been hot because steam was rising like from a bonfire from my foot. My sock had been worn through and my toes were peeking out trying to figure out what just happened.

Once back in the van and transferred into my manual chair, which I use for riding in, Joe took a good look and I manage to loose a sock but sustain no injury to my foot. Just then the family arrived back at the van and it filled with stories of the day. I listened, glad to hear the chatter and the laughter and the excitement of discussing what comes next.

Me, I was just pleased to be reminded that in an emergency, even with panic, I still can rely on my wits and my body to help me through. My feet may not walk much, but I can put the brakes on when necessary.

The Cancellation

Photo Description: A flock of birds forming a heart springing from a woman's hands.

Sometimes my rides to work are very, very, very early. When a morning person uses the word early, they mean it. When I'm picked up somewhere after 5:30 I know that I'll be sharing part of my ride with a wonderful woman, a delight to chat with, who goes to the gym on a near daily basis. She uses a scooter and talks very frankly about her experiences as a woman with a disability, as a scooter user and as someone with a serious and complicated and life threatening illness. She has fought hard to have the life she has, she has lived longer than anyone ever said she would and she bridles as the idea that it's 'inspirational' to want to live and to want to live well.

I like her.

This morning when I was on my way to work, early, I asked the driver if we were going to pick her up next. He told me that she was indeed on the route and would be picked up next. I leaned back in my chair and enjoyed the ride. I had a story all lined up to tell her, and a question I wanted to ask her. I like the moments shared with others who have a disability and who consider, like I do, that the disability community is a rich resource and who are proud to be part of it.

About ten minutes before the turnoff from the freeway towards her place the driver announced, "I'll be taking you straight to work. The next pick up has been cancelled." I thanked him for letting me know but ...

... my heart dropped out of my chest.

Was she OK?

She's never cancelled before. I didn't want immediately to go to 'health' as a reason because I hate when people do that to me. But then, I don't have the same kind of medical issues, she shared with me quite openly about her battles for good health and against disease. I wondered if she was battling now.

I didn't know what to do.

We have never shared phone numbers.

We have only ever shared rides.

It's none of my business. Except for the fact that 'Mankind is my business," to paraphrase Dickens. I care about her. I wanted her to know what she would never know, that I was on the bus. That I was thinking about her. That I thought she was a wonderful woman. That I enjoyed every minute of our rides together. That I wanted more rides with her. That I want her to win and win and win her battles for health like she's won and won and won.

I wanted her to know that she enters a space and brings warmth and light and welcome.

I wanted her to know that on a dark morning ride, someone was praying for her.

Quietly.

And hoping she didn't mind.

The Kiss

Photo Description: Two men kissing in a photo booth in the 1950's.

I remember, many years ago, sitting in a bar with a group of people I knew from work. The mood was tense. Our beer sat on the table slowly going stale. None of us were in the mood for drinking. We were here because none of us wanted to be alone. We all worked for the same human service agency, we all had a passion and life vision to work with people with intellectual disabilities, but we were all, at that moment, reconsidering who we were, where we were and what our future might hold. Two of our number had been fired that morning. Called in, accused, fired. The union didn't care. In negotiations the year before it had bargained away the demand that would have made sexual orientation a prohibited grounds for dismissal. We were, utterly alone. All of us terrified that we might be next.

They were dark times.

It might be difficult to imagine this now. For those who didn't live through it, it may sound almost unreal. For those who didn't live through it, it may be difficult to imagine what it was like to speak without pronouns, to have to lie to live, to have the magical ability to be amongst your co-workers while being completely apart from them. To listen to their truths and respond with lies or silence.

They were dark times.

Last week I ran into a woman with an intellectual disability that I hadn't seen for a long time. Since the dark years, in fact. She still lived with the agency I worked for back then. An agency  that would now never think of firing or, better, not hiring, someone who was LGB. (I've left the T off because I'm not so sure that Transgender Rights have kept pace. There is so much yet to be done. Still so much darkness.) I approached her to say, "Hello." It took her only a second to recognize me. I'm fatter, balder and in a wheelchair so I was surprised she recognized me at all."

"DAvid," she said. She had always put such emphasis on the first portion of my name. We talked a bit and she caught me up with her life. She introduced me to her support worker, a nice looking young man of about 20. He was very good as support, he stood aside while we talked and only entered in when she asked for his help in remembering something. He was a 'support' worker. Then I asked what they were doing there. As I came by it seemed like they were waiting.

Her support worker spoke up, "It's my fault, I forgot my keys at home and I'm waiting for them to be delivered to me." Just as he finished speaking another young man, of about the same age, showed up. He shyly passed the keys to the support worker, leaned over, gave him a quick, affectionate peck on the lips, and waved goodbye as he left. I said to the blushing support worker, "husband or boyfriend." He laughed and said, "Fiance."

The woman I knew said, "I can't wait for the wedding, I'm giving one of the toasts!" She and I talked for a moment more. I wished her well. I said goodbye to the support worker and congratulated him and wished him well on his wedding.

It was simply nice.

I happened near noon.

On a Saturday.

In the open.

In the light.

I left thinking about the two women who had been fired. The one's that were the cause of us gathering in the bar. The one's who had been invited but did not come that evening. The one's who had had their careers cut short, their lives battered by the trauma of being targets of hatred and bigotry. I never heard from them again. Don't know where they are.

But I hope, where ever they are, they are in the light.

Being kissed.

My Mouth and I Get Tea for Two

Photo Description: Tea being poured from a glass pot into a glass cup.

Odd encounters come unexpectedly. They catch you off guard. Let's face it, for disabled people, and I imagine but do not know that it's the same for anyone considered different, it's gets harder and harder to be caught unaware. Silly comments, inappropriate intrusions, and downright bigoted interactions aren't, like, um, rare. But, even so, I was caught off guard.

Joe and I were out for breakfast. He was over at the 'order eggs and hashbrowns' place and I'd gone over to a separate 'order tea and coffee' place. I waited in line up. Money crushed in my hand, like an excited 4 year old waiting to pay. I ordered our usual. Yep, 'usual' we come here often. I ordered one large cup of black tea and one large cup of green tea.

The woman brought them to me individually and I asked her if she could put them in a tray so that I could easily carry them. She did, cheerfully, and said, "So you like having both kinds of tea." I was confused, "No, I drink the green tea the other tea is for my husband." "Oh," she said, "I thought you were on your own." She thought I was alone. I buy two freaking teas and she thinks I'm alone, her assumption is that someone like me is alone. Evidence for two becomes a pity party for one. I practise my 'happy place' imagery while my calm yourself breathing strategy isn't working my breath comes ragged like I about to give birth to twins.

She didn't blink at the word 'husband' score one for her, but she said, "He lets you get tea by yourself? You could drop it!" She shook her head. SHOOK HER HEAD!! What kind of man must I have married that he'd let me, all on my own, without his ever present help, carry two teas on a tray across a room? She continues sarcastically, "Must be quite a guy you've got there."

One the teas were snugly in their tray, I was backing up in my power wheelchair, I stopped at her 'my guy' statement. "Yeah, in fact, after a blistering, passionate Friday night, I can't walk for days!!"

I couldn't read her look. Shock? Horror? Envy?

I didn't care.

Welcome Hands

When I am about to receive service from someone, as a person with a disability, for issues regarding my disability, I am filled with anxiety. I do not trust, and I don't think I'm alone in this, that the person, who will be randomly selected to serve me from the cadre of people on shift that day, will be:

1) happy in their job
2) free of prejudice against disabled people
3) free of bigotry against fat people
4) have a core value of kindness
5) able to understand my fear and how to handle it

Some of that list may surprise you. "What? Someone working with people with disabilities who is prejudiced against people with disabilities? How can that be?" I assure you it can be and I'll leave you to speculate how that comes to be as it's a question I wonder often, in my many capacities around the subject of disability.

The other day I received service from someone. I felt the anxiety. Didn't know how I'd be treated, didn't know if I'd be respected, didn't know if I'd come out the other end battered or bettered. But the service I got was simple, quietly reassuring, gentle and even a bit playful. No one thing was exceptional in and of itself, but the service was offered in a way which had me feeling relaxed only a few minutes in.

My brain said: I'm safe here.
My heart said: I'm safe here.
My body said: I'm safe here.

I left struggling to figure out exactly what "behaviours" were done. I couldn't really find any. I've received this service before, and will again, and there wasn't anything really unique this time.

Then I thought of the "attitude" with which I was served and then it was easier to figure out there was an attitude of:

1) welcome
2) competence
3) warmth
4) shared humanity
5) understanding of my sense of vulnerability

These attitudes shaded the work that was done. It filled the tone of voice, it put a cushion of careful gentleness between those fingers and my body, it communicated reassurance through demonstrated competency.

Two hands can touch, in the same way, doing the same thing, but the touch can be received in very different ways. Both hands doing the same job, but one pair of hands can leave me feeling supported, the other pair of hands can leave me feeling judged.

I was lucky.

I received wonderful support - from someone for whom welcome was an art.

The Gift

When I got to work this morning there was a nice little present for me. Someone had written in to subscribe to Service, Support and Success: The Direct Support Workers Newsletter, and had attached to the subscription request a short note as people often do. She told me that she had heard me lecture many, many years ago and was shocked, at the time, at what I said about sexuality, relationships and the right to love in relation to people with intellectual disabilities.

Her background, she described, was very conservative and the things I said shocked her both because of the subject of sexuality and frankness with which it was spoken of but also because of the idea embedded in the presentation that people with intellectual disabilities had a right to, and would inevitably grow to adulthood. At the time she brushed off my presentation, saw me as another 'all talk' presenter.

Part of the reason for her reaction was because she and her husband had had a young son with intellectual disabilities and as they struggled to teach him some basic skills, they couldn't imagine him in a relationship, living on his own, being a fully contributing adult. My talk had shaken her up but not enough to change her views.

I didn't need to do that.

Her son did.

She said that he did eventually and inevitably grow into adulthood and he did have expectations of living a large life, much larger than she and her husband ever imagined. She said that today, he's going to ask his girlfriend to marry him. She is excited for him, her husband, she says with a couple of lols can't talk about it without crying.

I've written her back and asked her to let me know if her son's girlfriend says, "Yes."

I really want to know.

The email made me realize that those of us who provide education and training regarding people with intellectual disabilities need to realize that the real teachers, the real change-makers are the courageous and bold and strong people with intellectual disabilities who will live the life they want and will make their way in the world.

At the very end of her email she said, "If you want to write about this on your blog, please do." People know me so well.