I Remember Too: A New Year's Eve Post

New Year's eve for us is not what it once was. There was a time we flew away to celebrate New Years in New York, or San Francisco or Vancouver. We' bar hop and then get very, very, drunk and stumble back to the hotel and crash into the bed. Then, as we got older, we stopped traveling and celebrated at home in Toronto, again by going out to bars and carousing around. Now, years and years later, we celebrate a United Kingdom new years. As they are 5 hours ahead, we celebrate, with the Queen, at 7 pm here, and then are in our bed without our books not long after that. 

Last night, as I readied for sleep, I remembered an incident from years ago, that happened at a New Year's Eve party at a straight bar downtown. We typically celebrated in gay or gay friendly places, but this even we'd gone out with friends to a bar we didn't know but that they really liked. I wasn't in a wheelchair back then, but I've always been fat, so at most points in my life I haven't really fit into the places where I lived, worked or socialized. I felt a little uncomfortable because Joe and I were at least a decade older than everyone else and we weren't sure that our relationship, should it become known would make us targets.

But as the evening wore on and drinks were consumed, we all began to relax. Then at one point a woman at the bar, like me there to buy drinks, turned to me and said something unspeakably cruel to me about my weight and after lobbing that at me she laughed hard, like she'd been funny. She was on the outskirts of drunk but not quite there. Even though what she said had hurt, I paid her no attention and began using strategies I have taught myself to deal with situations like these.

About five minutes later she dragged her boyfriend over to me and told him that I was the guy at the bar she had told him about and then turned to me and said the same thing again. She laughed. He looked amused but also like he wanted to get her away from me quickly. This time I didn't stay silent. I said, and I remember this clearly, "You are a horribly mean and cruel woman. I suspect your friends fear you more than they like you." My words caught her and she looked as if she had been slapped. 

Then her boyfriend managed to get her away and back to her crowd. It took several minutes for me to get my breath back. Then I saw her coming back to me, she was crying. She said that she wasn't cruel or mean and that she wanted me to accept her apology for what she said. I looked at her and said, "No, I don't accept your apology and I don't take back what I said. You attacked me, a stranger, just because I'm different. Get away from me."

Twice more she returned, each time more desperate for me to say that I understood she was joking, that she wasn't mean or cruel, that she was sorry for what she said. Twice more I asked her to leave me alone. Twice more I said that she had hurt me for no reason and I have no reason to accept that her apology is real.

Maybe a half hour later her boyfriend approached me and said that this whole thing was ruining her night and would I please just accept her apology. I looked at him and said, "No." I told him that it wasn't just her night that had been affected by this, but mine too. I asked him if they could just now leave me alone. He nodded.

At midnight as people were kissing she approached me for a kiss and I refused it. To be fair here, I don't kiss people I don't know no matter how drunk I am. But I really didn't want her to touch me, touch the body that she found funny, touch the body that she had held up to ridicule. 

And then it was over. I said to Joe, who was of course aware of all of this, I hope she remembers this night and remembers how words can hurt other people and that those she sees as being below her can fight back.

All of this memory flooded back into my mind and I could remember everything, the sounds, the smells and, of course, her words.

But.

Then there was me.

I refused her apology several times. I knew that she was distressed and wanted absolution and I didn't give it to her. I had been hurt. I was angry. I wanted to hurt back. And. I did.

I value kindness.

Kindness for all, not just the deserving, but for all.

I had said, almost as if cursing her, that I wanted her to remember that night, remember what she said to me, remember how it hurt me. I wanted her to reflect on the impact of her actions.

I didn't realize that I'd also cursed myself because I still remember that night. I remember it as the night that I was unkind and unforgiving and even cruel in reaction to someone who hurt me. I don't like the man I remember being very much.

Every year, for many now, my only resolution is to live in such a way that my memories are of a 'me' that I respect and a 'me' that operates in the world with some kindness, and some forgiveness, and some compassion.

I don't always succeed. I didn't yesterday.

But that's the thing with resolutions, you make them and make them and make them until you finally make them.

Enjoy your new years eve. Where ever you are. Make memories that will bring smiles to your faces ten or twenty or even thirty years later.

Poverty of Being

"You don't need that!!! You are too fat already!" said a sharp and harsh voice. Though the comment wasn't aimed at me, though I was only rolling by, I felt slugged in the gut. I'd heard those words before. I'd heard that tone before. The shame I felt for a very long time rose afresh. I thought I'd buried it deep, I thought I'd conquered it, but no, here it was again filling me. Nausea coiled in my stomach, sweat broke out on my back and shoulders.

Ahead of me was a little girl, with her mom, the girl held in her hands a sugary cereal, her face looked freshly slapped. Her cheeks stinging with red. She was frozen to the spot. "Now put that back." She did as she was told. Her body, not her mind, followed the instruction. Her face was blank as if she had stop existing in her body and only a dull fear shone out her eyes.

Her mother saw the hurt.

She looked ..

She looked ...

Triumphant.

"I only say these things for your own good."

The tyrants ready excuse for inexcusable behaviour.

I saw in the face of the little girls mom what can only be called a little thrill of superiority. She not only powerful because she was older, because she held the purse, because she wore the title 'Mom,' but because she was thin and pretty. Her daughter was an easy victim. She had bought her status as fat and ugly - even though those things weren't actually true - so she didn't fight back.

Rolling by I had a thousand things to say. And I said none. My voice. A fat voice speaking round vowels would not be heard. I knew that. I also knew that for a child fearing a lifetime of being less than because she was a bit more than, I am not an advocate she would want. Finally, I was afraid that the mother's cruelty would be reignited and the little girl's soul was still freshly bleeding.

As I continued away I thought of the triumphant look on the mother's face. I wondered at her poverty of being. That one gets affirmation from inflicting hurt on a child, your child, seems to me to be an almost desperate act from someone with a heart full of nothing. 

In a week, the mother will have forgotten this interchange.

I can say for certainty, that that little girl, never will.

It will be packed in her luggage when she leave home. It will colour the stories she tells about her childhood, the way she remembers her mother. Because power is coming to her. She doesn't know it yet.

But it is coming.

Why

Yesterday was my first day out of the house for five days. I'm the kind of person who doesn't like to be indoors for long periods of time. I love my home, but I also love being out, in the world. But I'd been laid very low by a cold and cough that left me bent over and weak. I started medications last Friday and slowly began to get better. I tried going out on Boxing Day but couldn't. But yesterday I was determined.

The cold wasn't my only reason, though. The snow has seriously decreased my mobility and independence and increased my need for help. I don't like either of those things, but I'm going to have to learn to cope. I don't want to, but I have to. It's not a step back, I tell myself, it's just a different circumstance leading to different and new solutions.

All that to say, I went out.

We had a few chores to do, things to pick up, so we plotted a map and set out. Wherever I could manage to push myself I did, and wherever I couldn't I didn't. It was hard not to let my spirit be dampened by this, but that's how it is.

We were just going into a store when a woman with a disability, a wheelchair user like myself, was being let off at the door by the local disability transit bus. She followed us in and went through after me while Joe held the door. She thanked him for making her access easier. I turned my chair to wait for Joe and in doing so greeted her as well. "Winter's tough on chairs isn't it?" She said that it was. I mentioned my difficulty in needing more help.

She said, "Do you feel guilty using the disabled door buttons?" I told her I didn't. She said, "they are help too. If they aren't a big deal why would someone holding the door open for me or giving me a push when I need it be any different?" Then she was off to work.

Why?

I think the disabled button helps me without diminishing me. It's just there for a purpose.

But why do I feel diminished in some way?

I don't know, do you?

Favour and Grace

"Those less fortunate."

This is a phrase that I think I first heard as a small child being explained the meaning of Boxing Day. I was told that Boxing Day was created so that people could box up old stuff, having got new stuff at Christmas, for the poor. The poor would be delighted to have the old stuff and we should remember that we can make their lives better through acts of charity. This all confused me because no one I knew boxed up old stuff and gave it to anyone. But then I was told that's the tradition that started it and now we get the day off but aren't expected to give anyone anything. So, in the end as I understand it the poor stay poor, we keep even what we don't need, and we get a day of to celebrate an act of charity that we don't do. To my child's mind, that made no sense at all.

I have been sorely tempted to look up Boxing Day on Google but I'll do that after I write this. I'm just going on how I felt then and how I feel now. Then it bothered me that out of our bounty charity did not flow. Now, and perhaps because of the times, the phrase, 'those less fortunate' sticks in my craw. So now I'm more concerned how people are portrayed in speech than I am the miserliness of turning a holiday set aside for charity into another day for shopping.

But, words matter.

When I see pictures on television about those less fortunate, I see that the phrase cuts a broad swath through the community. The poor, the disabled, the sick, the disenfranchised, the lonely, the immigrants and shutin-igrants. This is only a portion of the list of those that fortune is supposed to have disowned. 

This rankles me as I sit here in my wheelchair being judge by many as less fortunate because of my disability. It's like the phrase, 'there but for the grace of God ...' which implies not only have I been shunned by fortune, I have been denied the grace of God. I think it rankles because it sets up an idea of this hierarchy where those with God in one and and Fortune in the other look down on us, the unworthy of both, and the mere act of looking down confirms their rightful place in the world. The believe in a kind of trickle down economic approach to how their charity can effect my salvation and, if I'm grateful, raise my worthiness. Because now I have a purpose, they can raise me and thus raise themselves.

So they can dance with a woman with Down Syndrome at the prom, film it, at put it on the Internet to let people see how good they are. She get's a moment of pretend value and you get a lifetime of praise.

So they can show up at the house of a single mom, turkey in hand, and take selfies that show the turkey, the tears, and the porcelain smiles of those that give.

So they can 'like' a picture of a child with disability and differences that asks for a million likes to show her that she's loved and then share the picture to ensure that friends can get the feeling without actually loving anything.

BUT

In considering fortune and the fortunate, in thinking about those with and those without the Grace of God, the assumption is that they are and we aren't, that they have and we don't.

They don't know what we have.

The don't know who we are.

They don't know the lives we live.

They don't know that our self worth and our self value are real and are substantial and stand in opposition to the idea that value comes from wealth or walking or wellness.

We have a secret that we've been keeping.

Maybe it's time we box it up and send it on up to the more or less fortunate.

I would.

I really would.

But I've got shopping to do today.

The Signature

First we had a problem.

Then we had an idea.

The problem was with Santa, or more precisely with his signature. The girls are of a suspecting age and Santa is discussed as a possibility and as a, maybe not. We all think that kids should be kids as long as they can be because adulthood is a long, long road. So, we had some gifts from Santa that needed to be wrapped and needed tags signed, "From Santa."

Joe, for the life of him, can not fake a signature. He really can't. He has lovely handwriting and can't bring himself to change the nice neat round legible letters of his signature to anything else. My writing is not the best. I have to transcribe notes within an hour or two or I can't read them myself. I can't even print neatly. We figured that typing would be a dead giveaway.

So what to do?

Then we realized that that afternoon we were going to Handel's Messiah and that the crowd's average age is death minus three maybe we could find a Santa there who would sign the cards. It struck us that we had a need and an opportunity. We could give the gift of being Santa to someone there who might just love to have that story to take home.

It will not surprise you to know that I think that stories are important.

We looked around as people were getting seated. I sat in my wheelchair at one end of a shortened row and an elderly woman sat in a wheelchair at the other end. Her husband had not been able to get seats for them together so he sat right in front of her. He stayed with her until the last possible moment and then took his seat. She sat stooped over in her chair and he saw right away that she might have difficulty seeing over him so he leaned over as far as his body would let him to give her a better view.

Nice man.

A Santa kind of guy.

At intermission I had the tags in my hand and I waited until he was just in front of me. I caught his attention and I started to mention the need for Santa's signature and I didn't have to go further. "I understand completely and I'd be delighted." He stood there and signed from Santa and told us a little bit about his life, he was a man who clearly loved his wife. He finished and went over to his wife and we could hear him telling her about signing the cards and she laughed with delight. They were complicit in keeping Santa alive.

He didn't take his seat when intermission was over, he sat back further, just over a bit, so that his wife would have an unrestricted view of the performance.

We'd chosen well.

On their way out, as the went behind us, I heard them both wish us a Merry Christmas and then a soft 'Ho Ho Ho' came from a woman whose face was wrapped with a smile.

Sometimes in having a need, one can give a gift.

I Was Chosen

I went into the pharmacy on the ground level of the building that houses my doctor's office. I wanted to get some nose spray for the way home. It's a small store and I was unable to get in because a really big service dog came over to sniff at my chair. He was a lovely dog just checking out where I'd been. His master noticed him and called him back. "He's a great dog but he loves to sniff things some times," the fellow smiled as he spoke. I told him that I loved dogs and I loved being in the presence of dogs so not to worry about me.

The clerk guided me to where the spray was and they only had one brand and it's one that I don't use. I rolled out of the store and past the man and his dog who were now at the counter. I went to the outer lobby where Joe had designated for me to wait while he went to get the car. The man came by and again the dog stopped and looked at me. He didn't sniff, he just looked at me. The fellow then began to speak about his dog.

He told me that he was HIV+ and that his dog had saved his life several times. He said that he had been fighting depression and the dog who cares for him also needs care from him. "He gets me up every day and gets me out every day. Without him, I'd simply die alone on the couch." I started to speak but he cut me off and began telling me about how he's been dealing with both his physical and mental health.

I admit here shamefacedly that I was annoyed.

I had wanted to speak.

I had something to say.

I pushed that annoyance aside with the sudden, overwhelming realization that yes, I did have something to say but I also had people to listen. Just listen.

So, I listened. I contributed by showing that I was attending closely to what he was saying, nodding in agreement or shaking my head in incomprehension at the cruelty of others, it was like a dance, he led, I followed.

Then the words stopped.

He was done.

He asked me if I was waiting for WheelTrans and I said that I was waiting for my husband and as I said that word Joe appeared at the door. Given that it's winter and given I was in my manual chair, I need a lot more help. The two of them worked to get the door open and keep it open while I went backwards down a steep ramp. Everyone wished each other a Merry Christmas and we went out separate ways.

That dog knew.

He sniffed me out.

Then he sought me out.

He just stopped walking and looked at me as if to say, "could you be a human being right now?" He knew his master need to talk to someone, to make contact with someone.

I had been chosen.

More.

I had been chosen by a dog. In my mind, there is no higher compliment and no greater honour.

It's Christmas Eve, let's give the gift of listening, really attentive listening, to each other.

It's what the dogs of the world want.

The Taste Of Something Sweet

My 65th birthday taught me something, or maybe it's better to say, it caused me to focus on something that has always been just slightly out of my view. I'm still working out the implications for my work and for my life. Yeah, it was kind of big for me. Let me tell you what happened.

I've been unwell, really unwell, for a week now. I should have gone to the doctor earlier, but I didn't. So as my birthday approached, I was feeling really tired. Tired from coughing. Tired from lousy sleeps because of coughing. Tired enough to make everything, including things I like, seem burdensome. Even celebrating my birthday, which I had looked forward to, seemed like work to me.

But plans had been made. It wasn't going to be a big deal but it was going to be fun, and delicious. The girls and their mom were coming over and they, along with Joe, would make a huge batch of pancakes. Half blue berry and half chocolate chip, I was on the blueberry list, I'll leave you to guess who was on the chocolate chip list.

When they arrived I had moved from mys spot in my wheelchair here at the computer over to my big chair in the front room. Joe and I had been watching television and when the doorbell rang, he got up and when the door opened the noise began. It was happy noise. It was 'we're here' noise. It was welcomed noise. In they came to the front room and the first of many 'Happy Birthdays' was wished. We all talked together for a few minutes and then it was time for the kitchen.

Ruby and Sadie followed Joe to the kitchen and soon pancakes were underway. Marissa stayed and talked with me a bit and then, coming to a call from the kitchen, she went along to check on the progress and see what she could do for help. This left me alone. The room was darkened, purposely, so the Christmas lights could do their job of making the place seem warm and welcoming.

I took the moment alone to push back in my big, soft chair, and close my eyes. I could feel the warmth from the heater, I could smell the pancakes cooking, I could here the gentle sound of industrious children excited to be doing something for someone else. I could hear the sound of all of their voices, a soft symphony of instruments all perfectly tuned.

And I felt loved.

I felt embraced.

I felt hugged.

But more than that, much more than that, the sounds and the smells and the warmth combined with the weaving wonderful sound of voices in harmony with each other, I felt safe. Completely and utterly safe.

I seldom feel safe.

But there I sat, just a bit apart hearing the world around me and knowing that in no dark corner of my house, in no dark corner of anyone's mind, lurked danger. No one would hurt me tonight. I felt that. I knew that deep down inside me.

I rarely to never feel completely safe. As a person who lives at many intersections regarding disability, and sexuality and weight I am easy prey for a wide segment of the population and I have often shrunk deep down inside my body, hidden myself away, making who I am seem to be what they see and knowing that they are wrong. This is how I protect myself.

But I could rise up from that hidden place. I could inhabit all of my body and all of my differences because they are known here, yes, but they are cherished here as well. No one here would wish me different.

I was safe.

The next day I began to think of the people we serve who have significant disabilities, who are often those who experience life from other rooms of awareness. Who hear sounds. Who hear voices. Who smell smells. Who experience welcome though senses and through a lifetime of learning. Their mental age is the chronological age, people learn from the lives they live and should be respected for who they have come and how they have managed to survive.

Can we create moments where people who may seldom feel safe, completely and totally, in their body and in their mind and in their soul safe?

How do we do that?

How do we use what's at hand to create at first moments and then, perhaps even, lifetimes of feeling safe, and warm and welcome? How do we make it safe for people to rise up and live fully in their body, fully in their world?

I think the answer is easy.

As easy as the smell of blueberry and chocolate pancakes.

As easy as warm lighting.

As easy as the soft sound of voices around them.

As easy as the taste of something sweet.

Shut In, Shut Down

Sometimes having a disability isn't the primary diagnosis in regards to my mobility, my energy level, or my ability to get things done. Sometimes disability is a very, very distant second. Sometimes the primary reason I can't do what I normally do is because I have a cold, a really bad cold. That's what's been going on with me. I have an energy sucking, motivation robbing, cold that leaves me wanting to do nothing more than sit in a chair, wrapped up in blankets sipping tea. That's where I am and have been for several days.

Finally I called the doctor to see if I could sneak in an appointment. I was put on a cancellation list and of course, no one cancelled. Why is everyone out to get me??? (That's the sick me talking.) But I did get in for this afternoon. It's at an inconvenient time and we're going to have to figure out how to get me there. We've not been since we moved and I've never made the trip in my manual. There's a first time to figure out how to get over street car tracks in an intersection, and this will be it.

I am lucky to have a good doctor who has good people working for him. When we called for an appointment there was an immediate attitude of let me see if we can help. While one thing wasn't possible another was. They can't do what they can't do, of course, but 'no' isn't their first thought in dealing with patients.

We had considered going to the emergency room, or one of the walk in clinics, but I was too afraid of who we'd get. Chance hasn't always rolled me up winners. I might think that the issue is that I have a bad cold that won't go away, they might think the same thing but feel compelled to speak to me about my weight and my disability and my activity level first. I don't trust that won't happen and I don't trust that I might lose it and chase them down the hallway in my chair hurling the AFA bomb at them.

You know the AFA bomb?

Arrogant Fucking Asshole.

So we're going down to an office where I have always been treated as welcome, and to a doctor who sees me as a patient that needs his help not a thing that needs a lecture. 

I hope to get back to blogging regularly, I've missed the time that blogging gives me to reflect on what's happening around me. But, to be clear, sitting in a room, swaddled in blankets, sipping tea, watching Netflix isn't inspiring stuff that can easily be turned into tales to tell.

My Saturday Outing

The Christmas pantomime has become a tradition for us and we were looking forward to it. Because it's nearly the holidays, I got sick, of course. It's my second cold this season. Fa La La-cough cough cough. I decided the night before that I was going, cold or not. In the morning the whole thing seemed daunting. And let's stop here to for a bit of frank honesty.

It takes a lot more work, and a lot more worry, to do stuff like this when you have a disability.

There.

I said it.

I worried, let me count the ways:

1) would we get a disabled parking space anywhere near the theatre
2) would the restaurant that we chose to go to beforehand be accessible, toilets and all
3) would there be a lot of snow on the sidewalks making the trip treacherous for both Joe and me
4) once at the box office would the tickets really include a disabled space, they often mess up the tickets, theatres do.
5) if we do get accessible seating, we know where it is, it's down a huge and quite steep, sloping aisle, will I get down safely in my manual chair.
6) how the hell am I going to get back up
7) if we didn't get accessible parking where am I going to get picked up
8) how many people will be bothered about the space I take on the 8 different elevator rides I'm going to have to take to make this happen
9) will I find a place to pee somewhere in between lunch and the show starting
10) will my being in a wheelchair cause inconvenience or stress for the kids.

I've stopped there because I think you get the point. We had managed everything, including an excellent parking spot and half the elevator rides. We were at our seats and the next big thing was going back up the really steep aisle between the hill of seats that rose behind me.

During intermission I asked Joe how he thought we should tackle it. I'd never been to the theatre in my manual, we'd always come in my power chair before. I knew I couldn't go up forwards, I've been working out, sure, but it's really steep and it's thickly carpeted. I wondered about walking up a couple of steps, sit and then try again. I'm a wall walker and a wall was there to be used. Joe said, "Just go up backwards."

This is something I've been doing for a while now on very steep ramps or curbs that don't have a level entrance. I'm pretty good at it.

We waited until there was room and then back up I started, going backwards all the way. Joe, Marissa, Ruby and Sadie, helpfully called out the number of rows I had yet to go, which was encouraging for me to hear the numbers steadily go down. I use my arms, my hands, my feet and my legs, and they all worked smoothly. I crested the top and, though I had to stop and catch my breath, and have a coughing fit, I made it.

We had had a wonderful time. Nothing I'd worried about came to be.

But, and let me be clear.

Every disabled person reading this knows, 'well, that's this time,' the next one is the next one and there is no predicting that the ticketing would be right or the parking available or the sidewalks passable.

It's part of having a disability.

But then, again, I realize that ... doing damns the darkness ... and it was true, my memories of the whole trip will be bathed in the light created by the sound of the kids BOOing the mean character and cheering the good one, or the sound of them singing along to an 'A Christmas Carol' version of YMCA while making the letters with their arms, or their groans at the bad puns.

But I also have a private memory, one I'll share here, it's of cresting that long, steep, carpeted aisle and realizing I'd made the top. I still had my power chair, but this time the power source, was all me.

All me.

"But," He Said

"Who design's this shit anyway," he said angrily as I asked him to move so I could get through the passageway from the restroom and into the restaurant area. I was taken aback because he had been nice and accommodating when I'd asked him going in. He had to know I'd be coming back. He saw the look on my face and said, "No, no, I don't mind moving, don't worry about it."

"But," he said, "it's got to be awful for you to have to ask ten or twelve people to give you space when you want to go pee." He was right, of course, it was awful and even when people are nice, it's still awful. This particular set up had a counter with tall chairs on one side of the corridor and small tables on the other. They were making space every where they could for people to eat. On the way in, it was completely impassible because the people in the tall seats, they were all full, and the people sitting on the corridor side of the tables all needed to move over a bit for me to be able to get by.

And I had gotten by, I had asked each of them individually, because each of them waited to be asked, unlike some situations where people see and move and create a path for me to get through. Then I only have to thank all of them. This time however it had been a ask and thank situation with each person, except the guy who spoke who had simply moved his chair when I was on my way in.

"They know that the disabled washroom is down here, they know disabled people come to this restaurant, who the fuck designs it so you have to ask strangers to help you out when you go to the restroom?" I was gawking at him a bit and he said, "What?"

"You get it," I said, "I don't encounter that often."

"Oh," he said, flummoxed by my simple statement.

I then asked him if he had a sibling or relative or friend who was a wheelchair user, he said that he didn't. "Then how did you even notice?" I asked thinking it a reasonable question, usually people who have at least a hint of understanding have had some sort of experience with disability or with mobility issues.

"How did I notice?" he laughed, "I've got eyes and common sense, that's all you really need isn't it?"

I wished him good day and thanked him for understanding which he brushed off with, "You don't have to thank some for decency, or at least you shouldn't have to."

I shouldn't have to.

But I'm made to.

All the time.

What Opinion Isn't

I was harshly criticized recently for publishing something on my Facebook page that someone else thought was 'inspiration porn'. I admit that when I posted it, I saw that it could be taken that way, but there was something about the intense dignity of the child, who was the subject of the video, that I wanted to share. No, I didn't talk about that on my posting, I had this rash feeling that I was tired of always having to explain myself and my reaction to things. I am allowed to have multiple motivations and I am allowed to have a dissenting opinion and I am allowed to see things differently than anyone else. So I posted it.

Now, I'm always open for debate and disagreement. I'm also open to being wrong. I don't find admitting error to be losing face, I find it to be liberating. However, I don't, can't and won't engage with someone who opens with an attack. I also have difficulty engaging with people who decide that they can decide on me, or be disappointed in me, or to dismiss me, because of a single post. I am more than one blog, one post. I am my history, as are you. There are people I'm still friends with even after we've had a really big disagreement or argument precisely because they are more that that moment, they are part of a history. Is it possible for one single disagreement to end a relationship - I would imagine so, but it would have to be a big one.

What I have loved about the readers of this blog is that there have been disagreements in the comments section here and on Facebook, but people have been, by and large, civil and willing to discuss the issue. I can't tell you how important that has been to my own growth, I've changed my language and my practice simply because I've learned from disagreements that lead to discussion. I can't learn when people are shouting at me.

In this particular interchange the person said that they needed to 'knock me down a peg or two.' I laughed out loud, literally actually, because I'm already a fat, gay, wheelchair user, I don't have a lot of pegs to be kicked out under me!

Sometimes it matters that we all treat each other like we matter. I find it unsettling that in a world of such hostile ableism that we can be so mean to each other, over something that really, in the end, is a matter of opinion.

And if we should be learning anything from the times we live in - opinion is not fact.

Silent Night: A School Pageant

We arrived at the school with Ruby and Sadie in tow. We wanted to be there early so we could get the disabled parking and I could get inside before people started streaming in. The kids needed to be there early too, so we picked them up and they rode with us. Ruby and Sadie ushered us into the gym and Sadie pulled out a chair in the front row so I could fit my chair in. Then Sadie disappeared upstairs. Ruby heard me mention to Joe that I'd forgotten my glasses so she picked up the program and read it to me. In doing so she pointed out three things: which one Sadie was in and which ones she was in. Then, she pointed out a third, simply called 'Silent Night' and said, 'You are going to really like this one.' Now she disappears.

The gymnasium of the school was packed. Standing room only. We joked with Marissa when she arrived that we could have sold the seat we held for her for over a hundred bucks. We all noticed the buzz of excitement in the room, it seems that everyone there had a 'star' in the show and were eager to get it started.

When the show began it was a bit more like a rock concert than a Christmas pageant. The crowd cheered at the end of every performance and that buzz, electric buzz, was there. We all joined in and were part of the sound in the room as comments were whispered about the songs, the acts, and the performers. The teachers all sat on a small stool directly in front of their classes and provided direction and support as needed. They were a show in and of themselves, all walking away incredibly proud as the room cheered the children on the stage.

Teachers create opportunities for their students to shine. I hope everyone there let a little of that light fall on the shoulders of those who made this happen.

I was curious about the third performance, why had Ruby said, "You are going to really like this one." We waited as they got ready behind the curtain and then the curtain opened. There were three or four rows of students sitting in white shirts and black pants. They looked like what the were, a choir. The music started and a lovely version on 'Silent Night' played. The whole class sung the song in sign language. Real effort was put into this because the kids signed in virtually perfect unison. The sheer beauty of the song in sign did something to the room. The buzz was gone. There was quiet. The students had captured the attention of the entire room.

Me, I had to fight back tears. I don't expect inclusion or recognition of disability any more. Here, in this pageant the kids had sung in French, and Italian, and Spanish, and Sign, as well as English of course. It matters that they did this. It matters that the teacher thought of if. It mattered that the kids performed it. It mattered that they respected sign language as a language just as they had done with the other languages.

Social change comes from moments like these.

Civil liberties comes from moments like these.

I'll bet at least half, but probably many more, of the families driving away in their cars will talk about that one performance. They will talk about being surprised at the complexity of the signs, they aren't just gestures, and the idea that one can sing in silence, that there can be beauty in difference, that deaf people have a legitimate language that needs respecting.

When it was over Ruby asked me, before she asked me about how I enjoyed her performance, Sadie's performance, what I thought of Silent Night. I told her she knew me well. Then we all chatted about the show and the kids performances, which were awesome, and made our way towards the door.

I had an opportunity to speak both with the principal and the teacher who lead the signing choir. I told them both about what it meant to me and how pleased I was to see that particular performance. The teacher told me that she'd tell her class and that they'd be happy that it had meant so much to me.

I like going to the girls pageant (after I got over myself ... but you'll have to rove back through the blog to find out what I mean) because it's a friendly and welcoming school, fully accessible to me, and because they seem to actively work at respecting diversity. It's nice to roll through the doors into a building with the full assurance that those on the other side of the door are truly glad you are there.

'Me' Matters

Well, it's official, working out does not help when your tires spin uselessly no matter how hard you push. I found it really frustrating to be stranded midway down the driveway between the car and the house. I had forgotten to put on my hat and I'm sure steam was rising off my head as what hair I have froze from the little damp that was left from the shower. I literally had frosted my hair.

I haven't been using my powerchair over the past many months, partly because I've been having trouble getting a new cushion and partly because I enjoy, really enjoy, pushing myself. The powerchair would handle the snow with no problem, but it increases my dependence on it's motors rather than my arms. I don't want to lose strength and then in the spring have to face a difference kind of immobility.

We're going to look into ways that we may be able to deal with the mobility issues but if anyone has ideas I'm ready to listen.

Tonight we are going to the kids Christmas pageant and even though I wouldn't miss it for the world. I have to admit the thought crossed my mind about the snow and the getting in and out of the building. I had to actively stop my thoughts in their tracks.

I have an odd way of being in this world, if it's something I'm fighting for that I believe in, I'd never entertain giving up. But when it comes to me, I have a long history of just giving up. Maybe, I realize because I don't really believe in me, in the cause of 'me', in the need of 'me', maybe I give up on the person who was called a loser for many years of his childhood. Maybe I feel safer fighting for someone else, than I do for myself.

But I'm working on giving up giving up on myself.

'Me' Matters.

I say that.

Not quite ready to believe it.

Winter 1

We had a few inches of snow yesterday. I love the beauty of the first few snowfalls of the year. However, once I became a wheelchair user, my affection for snowy days slowly dissipated. Manual wheelchairs and snow don't even belong in the same sentence. My power chair, with it's big ol' wheels, that's a different story, but only slightly, it is as likely to slide or fishtail as a car is but unlike a car, you're sitting on it, not in it.

With the snow yesterday came my first opportunity to go out in the snow and do some daily kind of activities. In my head I had this constant, "Yeah, this will be fun." I said it over and over and over again as Joe was getting the car out of the garage. When he came back in and said, "So, you ready to go?" My answer was, "No, I'm going to sit this on out. You go on ahead." Joe nodded and told me that it was probably a good idea because of the snow and headed out.

Winter 1 / Dave 0

I knew immediately as he drove away I'd made the wrong decision. Oh, it was nice sitting in a nice warm house doing work that I enjoyed doing, but I'd made the wrong decision. I wanted to go and I didn't go. I let my fear of the process of reorienting myself to pushing in the snow stop me. I try not to let fear make my decisions for me. But sometimes my judgement gets pushed aside and fear speaks loud and clearly.

Now, when I could have had the first time over, I'm going to have to have my first time today. I know it will be hard, and I will have to work to be careful. Rolling over snow is tough, rolling over spaces thickly carpeted with salt is even harder. But I'm going to do it. I'm stronger than I have been in many years and my skill with the chair is at its peak.

So wish me luck.

As long as my chair doesn't morph into a toboggan I'm going to be okay.

Ergometer

I was working out using one of the cable machines, it was set at a fairly significant weight, and my eyes were closed as I was exercising. All I was doing was counting the repetitions and, for me, that's easier to do with my eyes closed. I was at the number 28 when I heard a voice commenting about weight. I opened my eyes to see an elderly man, with a kind face, in workout kit.

Now I'm so used to people making comments about my weight, total strangers, that I put him in that category, what else could he have said. As the words started out of my mouth, my brain computed what he had said and it was 'You are lifting a lot of weight there." He was complimenting me on what I was doing and how hard I was working. But the 'retort' was on it's way out. I managed to stop what I was going to say but I was not able to turn the words into a statement that held any meaning. He looked confused, not about my words, which would have been understandable but by my tone, which I hadn't been able to switch, and it had been hostile.

So, I just behaved like a jerk whose words make no sense at all.

I continued on working out and waiting for an opportunity to say something to him, anything, to prove that I'm less of a jerk than he might think and that I can string a sentence together. None came.

This is no excuse but no one had ever spoken the word 'weight' to me in a complimentary manner. I had to realize that I was working with weights that are set at levels much higher than they were when I started and heavier that I though was possible for me. I was going to have to be careful.

Finally I saw the old guy using the machine I use every time I go, the arm ergometer, when he finished and headed back my way I said "That's a great machine, isn't it, great upper body workout."

"Yes, yes, it is," he said and smiled.

Nice old guy. Great that he's there. He's got the gift of encouragement.

I'm working to have better control over my verbal reflexes and to be more willing and more ready to think better of others as a starting point. 

Elevator

My office is moving in a few weeks and yesterday I was downstairs looking at the space the team and I will be moving into. We had a great discussion of set up and design and we talked about colour and furniture and all felt growing excitement about the move.

I mentioned that my only concern was the elevator and explained that how there wasn't enough turn radius when getting on at that floor because it's a smallish elevator. I had tried once before and simply couldn't do it. I'd have to take off my footrests to manage.

I offered to demonstrate, so everyone came over and I pushed the elevator button and then when the door opened, got on easily. I was mortified. After my big speech about how it was going to be something I'd have to think a way through, I got on simply and easily.

Over the next several minutes I thought about it. I had gone to that floor of the building only once or twice early on as a wheelchair user. It was really hard, impossible actually to get the chair onto the elevator without taking off the feet. I know that was true, I remember it clearly. The difference was that I am now a fully experienced wheelchair user and I know how to maximize space, even create space for the chair. It's something that happens naturally in my head.

I couldn't do it then.

I can do it now.

Now I have to wonder how many early tries and early fails have led me to decide that something is impossible not realizing that my skills would grow and being a wheelchair user is a skill based way to exist in the world.

I'm going to have to be careful about things I've dismissed as not possible. Oh, joy, more things to think about, that's work, but oh joy, maybe I've new experiences waiting behind doors I thought to narrow.

I'll Take Etiquitte for $2000, Alex!

Joe and I have watched Jeopardy, the TV game show, since we first got together. We both enjoy it. Joe is much better at the game than I am, he has a broader range of knowledge being one of those people who like history and geography, so he slays me every time. Sometimes our knowledge surprises us like when they recently had a category called "Disney Princesses" we hotly anticipated those questions. After Ruby drilled this information into our heads and then Sadie reinforced it, we are pretty Princess fluent. It was true to, Joe and I were hollering out "Jasmine!" "Aurora!" as we aced the category.

But, sometimes Jeopardy not only involves questions and their answers, sometimes in little ways it gives a glimpse into what kind of facts are important, what kinds of things are current, and what kind of things that people need to know. This happened a couple of days ago.

The category was 'Etiquette," we were doing okay with the different questions, and then the $2000 clue was revealed. I was gobsmacked and called Joe from the kitchen where he was making us tea. He too was taken aback.

Why?

It was a question about disability etiquette.

This is an approximation of the clue, "a wheelchair is the extension of someone's body and therefore it is part of someone's personal ..."

Now the answer is obviously, "space."

This was the $2000 clue which meant that the writers of the show thought that this would be the most difficult question of the category. One of the players got the answer and play moved on.

Jeopardy!

A disability etiquette question on Jeopardy!

We must be making headway.

Here's to Alex and the producers and writers of the show for a few seconds of recognition that we have bodies and we have space and we have a right to have those respected. I'm guessing that they did more in that one question than they will ever know.

The Door

He was at a door that had swung shut behind him effectively locking him out. The door had a push bar on the inside which would have allowed anyone to help. The trouble is the anyone was me. I couldn't get to him. The stockroom was full of boxes and barriers which made it completely impossible for me to find a pathway to him. I was sitting in my wheelchair as he was gesturing, with increasing anger, for me to come and open the door.

I pointed to my chair and then to the blocked passageway. He didn't care he wanted me to come and let him it. It was cold. It was damp. There was no one around but I knew that some other employees were in the area somewhere. I had started loudly calling for someone to come and help. No one came. The area must have been fairly well soundproofed.

Now he's outright angry, furious that I wasn't coming to let him in. I felt horrible. I began to look if I could move or shift things to make a passageway. I tried but it was impossible, and even slightly dangerous, I didn't want stuff falling all over me.

Finally I heard the voice in the distance of the person that had brought me here to wait for them to try to find something for me. I shouted as loud as I could for "HELP!" He came running to see what was wrong and immediately saw his angry co-worked stuck outside behind a locked door. He immediately went to rescue him.

The door opened but the anger did not subside. He stormed passed me as I tried apologize and explain, because somehow I thought it needed explanation, that it wasn't clear, that I couldn't get to him because the pathway was blocked. He didn't even look at me, he just made a gesture brushing all what I was saying away.

I was left really upset.

I wanted to help him but couldn't. That is one of the most difficult feelings I have as a disabled person. Sometimes I'm in situations where someone needs something that I can't give. In an emergency I'm the one who needs not the one who helps. That's an ugly feeling. I would have loved to help. But boxes and barriers kept me for being able to. My ability to help, the thing that I really try to do, was compromised.

I don't know if he thought I could magically jump out of my chair and come and help. I don't know if he thought I was lazy. I don't know.

But I am disabled.

And I couldn't help.

I should be able to let this go but I'm having real trouble with it. What he needed was simple. So simple a child could do it. But I was not able to do even the smallest thing.

I hate this feeling.

Deep down I have to ensure that this feeling doesn't translate into anything more that it is. And that will be my work for the next several weeks.

Coming Out ... Going Out: An International Day of Disabled Persons Post

It was International Day of Disabled Persons yesterday and I wanted to do something to celebrate. I decided that what I would do that day, to make a difference, was simply: go out. For people with disabilities to come out, we simply need to go out. Existing in a public space is enough to challenge stereotypes and attack prejudice. To be different loudly, one need not say a single word.

We chose a mall that was a bit of a drive for us.I wanted to lap the mall so that I could both exercise my body while exercising the minds of those closed to the idea of disabled people being out and belonging in public space.

All the disabled parking spaces were taken so Joe dropped me off at the front of the mall, right beside a fairly steep and fairly long ramp. I got out, had Joe pull the car away so I could back up to give me space to build some momentum and then up the ramp I went. One fellow offered help but respectfully responded to my 'No, I'm good.'

I went through the large sliding doors with two young teens. One of them turned to me and said, "You should really be wearing a jacket." WHAT?? Disability is still seen as a diminisher by some. I said, "I'm old enough to be your grandfather, would you speak to him that way? And by the way, I'm a stranger, don't talk to strangers." So I begin my International Day of Disabled Persons by being chastised by a child for not wearing a sweater.

Then, the lap began. I've been pushing long distances for a while now and can really get up some speed. I was enjoying the physical movement. I was enjoying whipping around slow walking people and surprising them. I left them in my dust. It's International Day of Disabled Persons and I'M HERE, I'M OUT AND I BELONG. You may think this silly, but I don't.

Disabled people are in a continuous battle to claim public space and to claim belonging. Because we are diminished we are also dismissed as full human beings, with our own agency and with our own lives to live. I believe that every time one of us is anywhere 'they' are, we are agents of change.

Non-disabled people will never know what it's like to go out into the public realm and know, with certainty, that you will be constantly reminded of outsider status. Staring. Pointing. Giggling and then, of course, there are the weird kind of social interactions that come from people trying their hardest, and with great effort, to be kind. Like a young teen advising an adult man in a wheelchair about his clothing.

So I spent just over an hour lapping a large mall and purposely, intentionally, being OUT while I was out.

That's what I did on the International Day of Disabled Persons and that's what I do pretty much every day. Because I have to. This is my community, and I will claim it and claim it and claim it again, and I'll keep doing so until it's ours.

It's what we do, as disabled people, to make change.

There is an everydayness to the struggle for equality for people with disabilities and differences.

I saw lots of other people with disabilities in the mall we went to, simply going about their business, I saw people watching them in the same way they watch me. We are our own Public Service Announcement ... and people pay attention.

Which is why...

We will win.

Manda and the Day

Manda was a woman with Down Syndrome who I met years and years ago. If you read her file it would have said something like, "She was a lovely, kind and patient woman who enjoyed being included in conversations, being 'one of the crowd' with family and friends and being listened to when she spoke in her low growl of a voice." That being included in conversation, hanging with her friends and being listened to was seen as something to describe her, not every single person alive, it a big tell about how people with intellectual disabilities were seen back then.

She and I along with two others, were scheduled to walk up to a corner store, buy some snacks for the program and then walked back. This counted as both an outing and teaching about money. What it was was a walk. Manda was happy on the walk because one of her best friends, a much older woman with Down Syndrome was part of the group. She liked and admired her. They walked together chatting behind me. I had violated the 'you must walk behind them so they are in sight at all times' rule. I'd done this walk before, I could hear them behind me, I felt that every now and then a bit of privacy might be nice.

We got to the store and when we came in there were two other customers in the store, a boy and a girl, both in their late teens. They began snickering right away. They pointed at them and whispered jokes that they both found very funny. They were standing at the head of an aisle blocking the passageway. When Manda's friend tried to get by them, the boy said, "Say please you little retard," she started to cry. Manda walked quickly over to her friend to comfort her. She stopped for just a second as she walked by the boy who had said the foul word and who had spoken both with superiority and disdain she smiled at him and said something he couldn't hear. Her voice had always been a quiet one.

He leaned down to her to hear what she was saying, laughing all the while. When he was near enough she wound up and slapped him hard across his face. He screamed in shock, HEY! But he screamed to her back she was with her friend and she was comforting her.

His girlfriend turned to me and said, "Aren't you going to do something?" I said that I wasn't going to do anything. Not at all. "Isn't he going to do something?" I asked, when they looked blank I said, "Apologize."

I was told to Fuck off in a number of different ways.

Back in those days I knew little about the disability movement, about people fighting for freedom and access. I had never heard of an International Day of Disabled Persons. I was young. Very young.

Even all these years later, I remember this moment. The moment when a slap awoke in me the first understanding of rebellion against prejudice. It revealed to me that people with intellectual disabilities feel the actions of others and that words and attitudes can be as destructive as any other form of violence.

While this day, International Day of Disabled Person is tagged on the calendar today, it isn't limited to or by a time and date. It happens every time an action is taken that effects even a small part of the world around us. We to see that every day, every opportunity we have to make change, to fight prejudice, to actualize anyway we are part of an international movement. We are not alone.

The theme of this year's day includes the words 'leave no one behind.'

We watch out for each other, across the disability spectrum, ensuring that we all, like Manda, stand up for our friends, stand up to bullies, and strike a blow for respect and dignity.

On the way back to the program Manda asked me, "Are you going to tell?"

"Not today, and to no one here," I said.

She patted my arm.

In that moment, I was no longer staff, I was co-conspirator, and God that felt good. 

Help Unrequested

There is someone that I dread running into.

Just dread it.

It's not that she's a horrible person, in fact, most people just love her. They speak of her kindness and her thoughtfulness and her care and concern for other people. They suggest that there is a selflessness about her that they really admire.

I suppose that's all true.

To them.

Of course I see all those things about her. Before I became disabled I admired them, thought I should be more like her. Now, I still think that in many ways I should be.

But.

And it's a big but.

It feels very different being on the other side of her warmth and caring. Whenever I come into a room, and she is there. She practically bowls Joe over so that she can be a help to me. She inflicts care on me. I feel the intrusive nature, the needy nature of her actions. I'll turn my head to talk to someone and when I turn back there will be a cup of tea, a bowl of soup, a piece of cake, shoved into my face. We almost always meet at parties and social gatherings and when she and her help are there, my stomach falls.

People often tell me that I'm very negative about people's help and kindness. I don't think I am. I do need help. I do need kindness. But I only need them at my own discretion, not when people decide that I have no personal agency. Websters defines this as " the capacity, condition, or state of acting or of exerting power." To decide when I need help, what I need help for, how that help with be delivered and how I am supposed to respond to help unrequested, makes me someone different, someone moulded into an object, a thing, like a teddy bear being fed, or not by the whims of a child not on the wishes of the bear.

Help asked for, help given in response of a need I identify, I am so grateful for, like the woman who responded when I needed something that was just out of my reach.

Like the staff at the gym who help me 5 or 6 times a visit when I ask for help with equipment, with turning machines accessible, with adjusting the grips on the cable machines.

I need help from strangers.

I get it.

But do you. Help unrequested is something very different. I'm the acted upon. 

"She means well."

I'm told.

But does she?

I've talked to her about it. Told her that if I ever need her help and she's there I'll ask her. She looks at me curiously.

Like a teddy bear that just spoke.

Out Loud!

Today is a big day for me.

Many of you will know that I am the founder and co-editor of The International Journal For Direct Support Professionals, published in English, French and Spanish, which reaches a broad international audience. Out today is an article written by two miraculous people, Dr. Yona Lunsky and Dr. Anna Durbin, on the subject of supporting people with intellectual disabilities around issues related to HIV and AIDS.  This matters to me. Really matters.

Several years ago, at home, at night, I received and phone call from a social worker who worked far to the north of Toronto. He was desperate. He was supporting three gay men with intellectual disabilities. All of them had been having unprotected sex in parks and public restrooms in the small town in which they lived. When he began supporting them they all told the same story. They couldn't have condoms because if they were caught with condoms, and caught they would be because of the intrusive nature of supports, then they would be in trouble for being sexual and they might be discovered for being gay as well. For them, safe sex, was without condoms as evidence and done in secretive places like behind a public restroom door. They lived in fear. Fear of the agency for finding out they were sexual and that they were gay. Fear that they may have been exposed to HIV.

I was asked if I could, as a person, not as a professional, they had no trust in professionals with affiliations, support him is supporting them to get tested. I agreed to help. After contact was made with an anonymous testing site an appointment was set. The men were readied for the reality of the test and the possibilities of the results of that test. They were good men, they were responsible men, the wanted to know and they wanted to figure out how to change their situation so that they could reduce their own risk.

I met them.

We all went to the appointments and then ... we were done.

On the way back to the car, we suggested that they might want to stop into a gay bar. None of them had been in a place that welcomed  people who, like them, were LGBT. We went in and took a table and order beers for everyone but the driver. We sat and talked. As we did, the men talked about the test and their fears and what it was like to speak without whispering. They were awestruck at the place and at the easy way that people simply were who they were. The conversation was overheard by others at other tables. But there wasn't fear of the fact that others heard because the realization was that others knew exactly what they were feeling.

A couple minutes into their chat about their fears a gay man walked up to the table and dropped 5 condoms, one for each of us, on the table. He nodded, smiled and left. This started a parade of men coming by, dropping condoms, or wishing them well as they waited for their results.

Inclusion.

Welcome.

Belonging.

These three things brought their anxiety down. They knew the wait would be hard but they knew that they could do it, and whatever the result they would support each other and that their was a community that would support them.

Now these years later, we are publishing this newsletter today on World AIDS Day, we are bringing the discussion into the dark corners of the sector serving people with disabilities ... corners that still repress sexuality, repress education and force men and women into a lifestyle of shame and secrecy. A dangerous lifestyle.

If you would like to receive the article or subscribe to the journal (both are free) email me at dhingsburger@vitacls.org and let me know if you want subscription or single article.

We are also going to do a webinar on the newsletter hosted by the National Alliance for Direct Support Professionals.

Go to this link to sign up (and yes it's free too)


Please register for Let's Talk with Dave Hingsburger: December, 2017 on Dec 20, 2017 2:00 PM EST at:  

https://attendee.gotowebinar.com/register/7478734443151410179

After registering, you will receive a confirmation email containing information about joining the webinar.


I am thrilled that this is happening, and thrilled that those men, who all tested negative are now living positive lives fully supported and accepted. I never saw that coming.

Nor this.

Nor this.