good will

I am not a biblical scholar and would never pretend to know the Bible beyond a few verses that I particularly like and, of course, beyond my meager understanding of the message. But I am going to dare to quote something here, and change a word to fit our times.

"Peace on earth to those of good will."

Now, this is translated in differing ways but this is the translation I'm going with today. I first noticed the distinction between this and "Peace on earth and goodwill to all" years ago when I foolishly agreed to read a passage at a service. The very specific nature of the actual wording 'to those of good will' struck me. This isn't a platitude, it's a challenge.

In order to have peace on earth, it must be made, created, struggled for. It is something that happens when we DO something, FEEL something, ACT on something, it's what comes when we develop good will to others, to our world, and to our mutual goals. 

It isn't a gift or a given. 

Something is required of us.   

And you see it don't you. When people wear masks, their eyes show their intent on keeping people, their neighbours, and their community safe. Contrast this with those who are fighting and spitting and swearing and disrupting and ignoring the reasonable request to wear one. These are not those of good will, and that is not peace.

And you see it don't you. When people stay at home, just with those with whom they share a household. When people zoom call to connect without contagion. When  people actively work to flatten the curve. Contrast with those who party in large number and then justify, justify, justify, by talking about my rights and my home and no goverment will tell me ... ignoring that the government didn't tell them, science did.

And you will see it tonight. There will be those who hunker in and hunker down and pop champagne in a room that will not roar a cheer in response. There will be those of good will, taking care of business quietly. But then again they are contrasted by the strident, angry, statements about covid only killing the weak, not the strong, so who cares. Well, maybe the weak.

So happy new year to those of good will, if there are enough of us, maybe it will be happy. But I fear those who aren't of good will, not even that, those who are actively of ill will. 

I type this alone in my room.

I type this joining in with the good will of others. 

Simply because I wish for peace.

The Gift

 Before I even open a package.

I am reminded.

Of the gift of difference.

I did not always see it as the blessing it was. I blamed the hurt I felt from being so visible on my differences, not other people's prejudices. I was able to see, close up, how people who thought themselves kind could act in ways that were cruel. Seeing that could lead to bitterness. But it didn't. Because my differences became something that allowed me to see those others who didn't believe that difference should mean deferance. Those people who had whose open hearts lead to an open mind. 

My parents held a Christmas party once that I remember. They moved the furniture so that there could be dancing. They arranged for food to seem endless and booze to be abundant. I was maybe 12 years old, I didn't understand why they were having the party, I dreaded it. My house was the only place that I could be sure that I would not be bullied or teased or mocked, now people would be trotting in. My social sanctuary invaded.

The guests arrived. I didn't know most of them. I may have known their children but I didn't know the parents. About a half-hour in a coarse remark was made about my weight and apparently, it was hilarious. Soon after I retreated to my room, which was just off the front room where the party was happening. About a half-hour later came a small knock at my door, I reluctantly got up and answered. A really pretty young woman in a lovely dress stood there.

I looked at her with a question on my face and she said, "Your father tells me you want to be a veterinarian," she said and I nodded. "He tells me you have quite a collection of dog figurines," she continued. Again I nodded. "May I see them?" she asked.

I opened the door and she came in. The door stayed open and the sounds of the party were loud and the scene raucous with dancing and partying. She sat on the bed and I gave her a tour of the hundred or so dog figurines that I had. She talked about them at first and then slowly switched over to chat with me about other things. About every 15 minutes she was asked back to the party by the man who'd made the remark. She just said, "No, I'm good here."

She stayed with me showing interest in me for well over an hour. She left, closing the door behind her saying, "Don't let what people say make you feel like you can't achieve something in your life. Don't give them that."

 I had been repaired.

I am reminded.

Of the gift of difference.

Ymir Hill

Photo Credit (used with permission): YmirPhoto Dotca
Photo Description: A photo of the road into Ymir and the sun over Ymir Hill

It was my birthday. I had just turned 7 or 8 years old. As my birthday fell so close to Christmas, I'd never had any luck with birthday parties, kids just didn't come. I told myself that it was because so many other Christmas activities pulled them away, but I knew in my heart that this wasn't true. I wasn't a popular kid. My weight and my discomfort around others led me to be at the butt of the jokes and the subject of bullies. So this Christmas we had decided to go sledding down Ymir hill. Ymir was a short drive away so we piled in my brother, my mother and I and headed for the hill.

We got there and there were only a few kids around, most of them playing up by the water tower. I've always been a screamer, shut up, so let out a happy scream on my first run down the hill. I got to the bottom, fell off the sled and laughed. My brother was next, braver than me, he just laughed all the way down, as we trudged up the hill ready to make our way down again. The kids at the tower had disappeared. On the next run down, they were back, sleds and toboggans being dragged behind them. Now there was a bunch of us, I was please to not be the only screamer, going down the hill.

It got out that it was my birthday that day. The kids all wished me a good day and we continued trudging up and racing down the hill. It was a really fun day, a really fun party. It wasn't one that was planned and it wasn't one with people I knew. Just a welcoming bunch of kids, willing to join in a celebration that they were unaware of. 

I often think of that birthday as one of the happiest memories from my childhood. It is one where I learned something that would serve me well one day. Community happens. Inclusion happens. Welcome happens. It isn't created or manufactured or planned. It just happens. There is a magic to it. It is made when a drop of welcome is added to a drop of opportunity are added to a cup full of shared interest. 

This party had nothing to do with the disability that I would one day have.

This party had nothing to do with the sexuality that I would one day proclaim.

This party had nothing to do with the difference I felt.

These kids didn't come as an act of charity.

They came to get and in the getting give.

That night when we got home and were ready to cut the cake, I felt less alone in the world. I got a sense of the world that I would one day live in.

That's all I needed to survive.

No One Cancels Christmas

 I met him about two weeks before Christmas and after about 5 minutes I was sure I was speaking to a very large version of one of Santa's elves. His joy was exuberant, as all joy should be. It lit up the house. To say it was infectious would be a stretch because the staff had seemed to have caught only a very mild version of it. I went home that day with a bit of a grin on my face. I love Christmas, the presents, the tree, all of it. 

But I'd just met someone to whom Christmas meant the world. And I could understand why. He had told me about spending the Christmas holiday with a couple he had met from his church, he'd known them for years. Every year, he told me, he would go to their home and celebrate with their family. He knew the names of all their children, he knew what they all liked and were hoping for under the tree. The level of detail drew me in, I felt like I knew them after he'd told me about them. "I love them," he said simply.

The next visit was a bit different. He was near vibrating with excitement. But I was there as an answer to a call from the supervisor of the home. I sat down with her and her eyes were brimming, I thought she was going to cry right then and there. "What's wrong?" I asked. She told me that he had been invited to their home for Christmas every year since he'd known them and when it came time for them to pick him up, he'd be packed, but they never came. He'd never even been to their home. And yes, every year he was crestfallen. Every year he seemed to hurt a little more.

They'd see him the first Sunday after Christmas at church, they'd greet him with love and affection, but without apology or explanation. He never knew why they promised and he never knew why they never came. The staff had been told that they couldn't bring it up because he 'was lucky to have someone in his life' and there was a worry that their interference in any way would drive them away.

"What happened on Christmas Day," I asked, wonder how he handled being at home, being without family, without his church friends. "He is so resilient, he always looks forward to the day and we do what we can to make it special but his two housemates go home to their families, so it's just him and the staff."

"He still celebrates?" I asked.

"Oh, yes he does," she said, "he's a strong guy."

Christmas comes.

It always does.

A Couple of Pivots

Stay with me, I'm going to make a real pivot with this blog. A couple of days ago the girls were over to help decorate the tree. Sadie and I had a really funny moment in the kitchen. She had come in to get some canned pasta that she likes. Grabbing the can out of the pantry, I asked her to get a pan out to heat the pasta. 

She looked at me with confusion all over her face. "A pan," she said incredulously. I said, "Yes, you know where they are." She said, "Dave, a pan. A PAN?" I am now confused and said, "Of course." Looking at me like I might have lost connection to the earth, she took a bowl slowly out of the cupboard. I watched her as she dumped the contents of the can into the bowl and then take it to the microwave. 

I can't tell you how old I felt in that moment. I know that microwaves have been around forever but I don't use them much. They aren't the first thing that pops into mind. When I got it and Sadie saw that I understood we both burst out laughing. 

Pivot one.

So, what had I done? I posed an old solution in a new environment. There's nothing really wrong with that in this situation but I think that is the explanation for a lot of the problems that we face. People providing old solutions to new problems or bringing past expertise into new situations. The world changes quickly and we can be caught lagging. I know someone who has a bad relationship with her youngest boy because she is seen by him as demanding and diminishing. She acknowledges that and yet she did it with her daughter whom she is close to. She has a new situation and is using an old solution. 

I know that I bring into my relationships with other people a set of experiences and expectations that I have to shake off to be in the present with someone who doesn't know my rulebook. This is the challenge in the modern age, being willing to let go of past solutions and develop new strategies. People complain about bones aching when getting older, I'll take that over having to do mental and emotional gymnastics with a mind that wants to be set in concrete. 

 Pivot two. 

 I think this is one of the things we see with people with disabilities. Particularly those who learned how to survive in institutions. I don't know that we think enough about the trauma that institutionalization brings with it. I don't think we think about how in harsh environments strategies for living are burned into the pathways of thinking. I don't think we give those solutions the respect they deserve. 

In many cases, we want to rip those solutions away from them, or we pose nasty attributions to the character of the person, forgetting that at one time those solutions worked, forgetting that this isn't about you, forgetting that someone's triggers may result, like pain when shackles are released, from freedom itself.

As we have to keep ourselves nimble. We need to teach people with disabilities, first that they are safe from harm,(if they are) and then how to be in a new situation where old strategies aren't necessary. Maybe, just maybe, our job is to create the space where wounds heal first and then with a breath people can begin to experiment with new ways to be.

All this from a can of spaghettios. 

Opinions

(Image from Harvard Business Review - image has drawing of two people on the lower right and left of the image. From the person on the left is a speech bubble, from the person on the right is a huge speech bubble with teeth eating the other one.)

I was surprised when the contestants were introduced. We're fans of the British game show "Pointless" and we watch an episode every morning while having breakfast. It's been on the air for a long time so there are lots of episodes to pick from. This time we were watching Celebrity Pointless and when the camera panned the four couples I saw immediately that one of them was a woman with a disability. She was a wheelchair user like me and she sat comfortably perched on her power chair.

She was with another woman, non-disabled, and over the course of the show, something kept happening that really bugged me. The standing woman put her hand on the back of the powerchair, which I saw as a real invasion of space. It ended up with the woman leaning hard on the back of the chair, yikes. I mentioned it to Joe and he had seen the same thing. We've been married and done all sorts of naughty things to each other but he doesn't touch the back of my chair without my permission and certainly never leans on it. Ever.

It ended up when they lost a round and were off the show I felt relieved because of the tension that I'd had building in my stomach watching this. I really, really didn't like it. Then I started thinking about how people watching knowing nothing about etiquette and wheelchairs might think that was appropriate behaviour. The woman, a disability reporter and advocate, didn't use the platform she was given to demonstrate, without lecturing how to be around someone in a chair.

Days pass.

I thought about it again.

Who the hell did I think I was? Why on earth did I place on her something that doesn't belong to her? I know nothing of their relationship. It's not her responsibility, as it's not mine, to be constantly teaching. She has the right to set boundaries for herself irrespective of what a fat guy in Canada thinks she should be doing.

Sheeeeeit.

Just another time that my opinion leaps ahead of my thoughtful consideration.

Little Acts of Rebellion

bad drawing of two hearts, both the same, with the words 'the disabled heart' pointing to one, and 'your heart' point to the other, with the words 'so stop it' underneath the drawings. The drawing and words are in one colour: lavender.

When you are disabled people discount your relationships and see only what they want to see. In their eyes, Joe becomes my support worker. It's easier for them that way. It fits into their assumptions about sexuality and disability. They will it away, they make it invisible, they mask it with words. They do the same to children with disabilities. Their relationships with their parents aren't the same as typical kids. Love and affection, freely given to those born right are seen as burdensome tasks for those born left. They don't want to see disability and relationship in any way possible.

This makes it easy for them to kill us, or want us dead, or leave us at the bottom of the list when it comes to rationing health care. This makes it easy for movies to show loving parents shoving their children underwater in a bathtub for their own good in such a way that the audience identifies with the killer, not the victim. This makes it easy to see news reports of COVID crowded hospitals turning away disabled people because there are only so many beds, and those are reserved for the worthy. 

We are people without relationships. People without attachments. People who fill no hole in another's heart. We are unnecessary.

We have to stand guard against this.

I saw something that showed a friendship between a man with a disability and a regular dude. The friendship to me looked real, looked reciprocal, looked even joyful, but the spin suggested that this man, was saintly for his relationship, giving of his time, a volunteer of the highest order. I call SHIT!

In our own way, I engage in little acts of rebellion.

 I use the word husband, in reference to Joe, because that's what he is. But I also use it because it signifies that I have a relationship beyond friendship with him. A physical relationship. I use the word sometimes when it fits but is unnecessary because it never is unnecessary.

Because you see, every time.

Every single time.

You see the impact of the words.

Oh. OH. OOOOOH.

And it's not because we're gay, no that's left in the dust, it's because he walks and I roll. It's because his body is more acceptable than mine is. It's because they have to see me differently. They have to think differently. They have to dust off the dusty ideas about disability and give them a good cleaning.

Relationships are important for people with disabilities. And those relationships will change attitudes over and over again.

It's a little act of rebellion, but rebellion nonetheless.

Mistletoe: An Admission

(This image is owned by Raw television series. It is the word 'Raw' in red neon with the R and W being capital letters and the A replace by a flame.)

I think, yesterday, I experienced my first sense of what COVID may be doing to my mental health. Let's admit it, this is a tough time for those of us who are following the guidelines. Joe and I don't understand those who don't, can't see the virtue of their arguments, and fear that they may end up doing us all in. So, compliant sheep that they may think we are, we are pretty much in lockdown. 

We only see three other people who are in our bubble and that's always done thoughtfully. No coffee get-togethers, no quick lunches, no anything, especially no touch. We see this as our patriotic duty and it's harder than I thought it would be.

So we, like most everyone else, are binging on television series and the latest is an Irish drama called "Raw". It's compellingly written and the characters are fully developed. One of the storylines is about a gay couple. They aren't the feature of the show but they are integral to all the other action that goes on. We've been gripped by this series and really care about the characters, all of them.

The episodes are an hour long and we don't watch television during the day, there are too many other things to do. This means that we can only fit two, maybe three, episodes in an evening.

So, back to COVID, I find myself feeling isolated from people. Oh, there are zoom calls, but chat on zoom isn't the same as chat in person. People have a sense about them, for lack of a better word, an aura. It's the hug that a person's presence gives you. People, I find, are also less likely to tell the stories of their lives over an internet connection so we skate over the surface of our lives. In the end, we sound more like Christmas letters, information-packed, but lacking a real warmth. We become generic versions of ourselves.

Gosh, how I miss people.

Last night I couldn't go to sleep. You know why? Because I was really worried about a couple of characters in Raw. Would JoJo marry the man she loves? Would Pavel and Geoff get back together? I mean really, sincere worry. I knew it was a scripted show, I knew that it was years old and still I worried.

Why?

Because I needed to care about something, someone, outside of my bubble. Because I needed to be enmeshed in some else's story.

COVID has robbed me of that.

I'm missing it.

I woke up this morning well-rested, I did sleep finally after all. But I feel this is the first gunshot warning. "Take care of this Dave, now." And I will.

I'm only telling you this because I think it does us all well to look at where we are right now, with COVID, and our mental health. Yeah, we are coping, but at what cost? How do you take care of the needs you have, and the life you are missing? How do we get through Christmas in our small little bubbles? And is that the sound to the mistletoe market crashing?

Three Little Words

(badly hand drawn picture of the wheelchair symbol with 1- 8 items only sign directly beneath. The wheechair symbol is blue and the sign below is in red.

I've fought with grocery stores so often and told the stories so regularly that I've pretty much given up. The fight. And writing about the experience of being a disabled man trying to do grocery shopping. They don't care. The idea that the accessible lane should always be open seems beyond them. It's the one that everyone can go through, so it should be the priority, this simple logic seems to bedevil grocery store managers. They want to manage me, when I make a complaint, rather than manage the store.

Now, I'm just pushy.

For most of the stores I go to the accessible lane is also the lane for 1 to 8 items. With Joe in deep discomfort at breaking this rule, I just get in the line-up and explain to people that it's the only one I can use. Then we have wacks of people really pissed off at us as we empty a really full cart onto the belt.

Today, I didn't feel like being hated.

But I also wasn't going to give up on participating in taking my cart through and paying for my groceries. 

The store I was in has two accessible aisle's, one is purpose-made, and one is accidentally accessible. It's till 10, the last one and it's a bit wider by chance. We were just about finished and we'd seen that 10 was open and Joe was rushing me to get to the line-up. But sure enough, it closed just as we got there. I headed up to customer service, which is where the marked accessible (but only for 8 items) aisle was. Joe was behind me with a huge cartful of Christmas grocery shopping.

There was a woman there that I'd not seen before. I told her that till 10 had just closed and it's a wider aisle that I can use and there was a long lineup for the accessible (1 - 8) aisle. I don't mind lineups but I knew that when it got to be my turn good old Christmas impatience would be targeted at me.

I didn't feel like being hated.

So, I asked her if 10 could be reopened and that would solve the problem. And do you know what she said to me?

"Of course, sir."

The three little words of excellent customer service.

She was pleasant and came down and got us through and chatted with us as if we were the good customers that we were. There was no hint of aggravation.

It was amazing.

Of all my experiences of fighting for full access in grocery stores that was by far the most unusual. In fact it was singular.

I didn't catch her name so I can't write to the store and tell them about her.

They should know.

I'll figure out how to make that happen tomorrow.

Got a lot of groceries to put away.

His Eyes

 Today, I needed to ask a stranger for help. I do everything I can to avoid this, but life is life and situations are not always under our control. The only person that was around was an elderly man, with a face that looked like it had set in concrete. His mask may have covered his nose and mouth, but my those eyes. He looked hard. He looked old. He looked angry. But, I've learned not to read too much into resting faces, my face at rest also looks like I'm suffering through a really bad day.

He turned out to be a wonderfully gentle man. We only had a brief conversation when I let him know that I needed assistance we chatted while he helped out. I thanked him as we said goodbye and he brushed my thanks away. The whole encounter was instructive to me. He managed to help me, not in a showy way, or a condescending way, not to a background of angels singing hallelujah. In fact, I didn't feel lessened by the interaction. To help and to not diminish in the helping is an art.

I thought about him and told Joe about what had happened. Sometimes being disabled and needing help does not hurt. I pointed him out to Joe when I spied him as we were about to leave. I pushed my chair hard chasing up to where he was walking towards the door.

I caught up to him and he turned to me in acknowledgment. I stammered out that I wanted to say that he was a tremendously kind man. His head dropped as if I'd punched him in the gut. He looked away from me, not letting me see his face. He just said, "It's a long time since someone called me kind." And he walked off.

I don't know his story. I don't know his journey. I don't know about his relationships with the people he loves. But I do know that I'm glad I told him. Even though I'd felt a bit embarrassed to do so.

But he'd given me a gift.

And I wanted to thank him for it.

International Day of Disabled Persons

 As you all know I live at the intersection of sexuality and disability. I've been disabled now for coming on to 17 years, but I've been gay my whole life. I've been out for all of my adulthood and as such sometimes that really matters. I was at home when the phone call came, it was late. It was a social worker that I barely knew and did not work with so I was surprised to get his call. 

He told me that he called me because he knew I was gay and worked in a sexuality clinic for people with intellectual disabilities. He knew my philosophy about providing service to adults was quite simply that we provided service to adults. In his work with people with disabilities he came across three men with intellectual disabilities who, not being allowed to have relationships in their home, were cruising washrooms and parks.

They knew almost nothing about safer sex and no one had even ever explained condoms to them in a way they understood. Condoms were for pregnancy protection and they certainly had no worries there. They had heard about AIDS but didn't understand it. After he explained the seriousness of it, they all agreed to get tested. I was to be the link, he hoped, to an anonymous testing site near where I lived. They were open and showed no prejudice based on any kind of disability.

The date was set and they came down to 'a movie'. That was their excuse for coming to the city, it was an outing provided by a selfless social worker. I met them just outside the testing center and went in with them. They were somber and scared. 

They didn't know how to be angry at a system that completely ignored their sexuality and their sexual needs. They couldn't rail against the system that would allow policies to forbid love and banish relationships. They couldn't give voice to the very deep prejudice that runs through a system that support humans in need but without a shred of humanity in it's heart. 

They couldn't because they had only known repression and denial. 

They couldn't because their dreams had been governed and policed without mercy.

They couldn't because the life they wanted was kept behind doors built of privilege and power.

On the second trip down to get the results, they were all negative, we stopped at a gay bar, they wanted a beer. None of them had ever been in one. As they came in and slowly realized that most of the people they saw were of their community, a sadness overtook them. 

It's hard to see people living freely in the life you want.

It's hard seeing what you will never get.

It's the International Day of Disabled Persons. This is supposed to be a celebration and we are supposed to 'build back better' ... but we are a forward movement because back was always bad. 

Until adulthood really means something for people with intellectual disabilities it will remain a community wandering in the desert.

Pray God someone get them a glass of water at some point before I die.

WAD: Steve

 It was the height of summer, a blistering blue sky, a breeze through brightly blond hair. Our names shouted across a busy street. A wave. A smile that felt more like a hug. We waved back. He made the sign of a telephone. We nodded. And that was that.

 We called him, his phone rang without answer.

The call did come.

About a week later.

Steve was dead.

We hadn't known that he was sick, he didn't tell people. He was ashamed. He worried about what people would think of him, what people would know about him. He was dying. And he lived in fear. 

It was during those days when people were terrified of anyone who had contracted HIV. Gay people were still reeling from the shock of the new illness, the plague. We knew little one day and could debate doctors the next. Steve was one of the first.

I think of him, always in the winter. I'm not sure why. The memory warms me. In those brief moments of hello. In that smile that pulled you in and embraced you. In his joyous voice. 

I think of him.

And I think of his worry.

In the dark days, he feared us fearing him.

And we didn't.

He wasn't our first loss and would not be our last.

We would have held him if he needed us.

But that day and those times are gone now. The pandemic is something that everyone is fighting and because of that, it's different. We are called to fight this together.

Then, we were left to fight it ourselves.

You don't know Steve and that's sad, but that you would not get the chance to know him, that's what's tragic. Because he would have waved to you, from the other side of the street and you would have felt loved.

That's the work we do

 I was at a meeting the other day and we were listening to a town planner speak. As he spoke he used a phrase that I'd not heard of before, he talked about planning for 'complete communities.' He went on to explain that the term meant that planners had to consider 'all' and by 'all' it was clear that he was speaking about everyone including the long list of minorities. For him, it wasn't an access issue for people with disabilities but an access issue for everyone.

I drifted off a bit because he was, after all, talking about town planning. I began to think of the term 'complete community.' I had interrupted him to ask if that was a term that he used or was it a common phrase in town planning. He said it was a common phrase, I told him that I liked the term and would be stealing it. What I like about the term is its shadow. If there are complete communities, there are incomplete communities. Communities that don't welcome, that don't embrace and celebrate difference, communities whose barriers are as much social as they are physical.

I have only once or twice been at events where there was a complete community of attendance. Those times were amazing and they seared into my brain an image of what the world could be like. We are needed. Without us there is no community, it's incomplete, unfinished, a cake that failed to rise.

After the meeting was over, I shut down my zoom and began to see how planning for and building a complete community is necessary. It doesn't happen spontaneously. It must be made.

And that's the work we do. 

What Joe Said

 Today just a silly post.

Joe and I were talking, recently, about the ways in which people refer to disability. We are both plainspoken and we both prefer the word disability to any of the bafflegab that people come up with. Diversability and Special Needs are words that shame uses to cover up what they consider monstrous. Yeah, we are opinionated about this. Yeah, we get that a lot of people disagree. And, yeah, we think it's fine that disagreements exist. I'm okay with knowing I'm right and I'm comfortable with you thinking you are. Ta. Da.

Anyways, we make something for Christmas that we give out as gifts. Joe was showing me what he wanted to serve it in and I thought it way too big and would cost way too much. So Joe said, thinking hard, "I guess we'd better get something differently sized." He said it not even noticing it.

We had been in the kitchen and I was at the stove when the words hit, the giggles started. Soon, I'm hanging off the edge of the stove 'differently sized' you just said 'differently sized' and then I lost it. HAHAHAHAHAHAHA 

When I came too, I felt so good. I looked at the clock and I'd been laughing for over 15 minutes. Well, I'd kind of stop and then start up again over that time. Joe laughed too, at first tenuously and then full-throated. 

I don't know what it was about that moment, but I think we are all living in stressful times and we need to find humour. And when we do we should allow ourselves just to go with it.

Here's hoping you have a differently sized day today.

Three Stories from the life of a Disabled Man: Story 3

 I showed up to get blood work done. I was surprised that there was no line-up, I'd been a month or two ago and what with COVID keeping people out of the waiting room, we stood dutifully six feet apart in a queue that moved incredibly slowly. I thought I'd gotten lucky because of the time of day. I was welcomed in and I took a seat.

Then I noticed nearly a dozen people being turned away. I couldn't hear why they were being sent packing. On my way out, I ask and found out that it was now appointment only and those I'd seen turned away were, like me, people without appointments. My disability, I was told, was the deciding factor in letting me in. It's hard, apparently, for me to make my way around so they 'bent the rules' for me.

I didn't know how to feel about what had happened. I was glad to have gotten my tests done, true. But I don't have difficulty getting around, we have a car, we are retired, it's not tough. This was done without my knowing. People did things without me being informed or giving consent.

I ain't gonna lie: I was glad I didn't have to go home, make an appointment, and come back.

But I'm also not sure I was happy to learn the truth behind what happened. It made me wonder what other things are happening for me and to me because of my disability that I'm not aware of, I see prejudice when it's nasty but do I see it when it comes wrapped in kindness? Or being made the exception to rules others have to follow? Or, or, what?

Joe says I overthink these things.

Maybe I do.

Maybe sometimes I just need to let shit happen.

Three Stories from the life of a Disabled Man: Story 2

 We were going shopping for groceries. We both thought we'd come at a time early enough to avoid lineups but we were wrong. About ten people were stood in line waiting to get into the store. When I rolled up, approaching the end of the line, one of the staff at the front door called over to me, very loudly, "Hey, you in the wheelchair, you can come straight in." Every eye in the line-up looked over at me and I felt immediately on stage. None of them looked perturbed or in the least upset by this blatant favoritism. I called out, "No, it's okay, I'll wait in line like everyone else."

He ignored the, "like everyone else" part of what I said and called out, "It's okay, it's store policy." I was at the end of the line now and called back, "I'm okay here." Shortly thereafter a staff came out the other door behind the line-up and said to me, "You can go to the head of the line." I said, "No, it's okay." Then the woman in front of me turned to me and said, "Boy do they want to get you into that store!" I nodded smiling. She turned back towards the front of the line and then turned back to me, she said, "I think they're just trying to be nice, but it isn't really is it?"

I told her that I immediately felt on display and singled out, I knew the store policy and have always ignored it. She said that she turned immediately to look at me when the loud call to me was made and she got that made me kind of less than everyone else. I was blown away that someone got it. We chatted until it was her turn to go in. When we were invited in, one of the guys said, "We let wheelchairs in first," as if he was giving me information.

"I am not a wheelchair," I said, "I'm a person who uses one. There's a big difference."

"Soooorry," he said as if he was talking to someone who was way too sensitive. And maybe I am, but after it happens for the thousandth time, it gets wearying.

We bought cake.

Three Stories from the Life of a Disabled Man: 1

 I was at the gym and just finished working out on the cable machine. There are only ten people allowed in at one time and the place is huge so I didn't notice anyone watching for me to finish so they could use the machine. When I was done one of the bodybuilder guys was right over to the machine and did only two or three different exercises and was done in about ten minutes. I felt immediately bad, I don't want to be seen as someone who hogs a machine, even though I guess that's what I was doing.

I thought to myself that I can't be held responsible for knowing what someone else wants, that true if it's Joe but it is especially true if it's someone that I don't know. I thought about this as I was doing the ropes - badly and when I was exhausted from them I had decided to speak to him. Now I don't usually speak to others, especially bodybuilders, who exercise in their own space. But that is what I intended to do.

I caught him as he was headed to the door, I rolled up to him, keeping social distancing in mind and asked him if I could speak to him. He stopped and I began explaining, cause it's not readily apparent to non-disabled people, that there are only two machines, and the ropes, available to me all the other machines are inaccessible. 

Midway into my planned spiel, he interrupted me saying, "It's okay, don't worry about it, it's okay."

Anyone who knows me knows I like to finish my thoughts, I said, "Wait a minute," and then continued, "So I'm on that machine for about an hour. If you need to work through that machine to finish your workout or fit it into your machine, just ask me, I'm old, I'll enjoy the rest."

He hadn't heard me, "No, it's okay I can do other exercises to compensate when I can't use the cable machine, it's fine, don't worry about it.

"Please wait and listen to me, I want to be part of the gym community, I don't want to be a machine hog, I want people to work through when they need to, like everyone else. So just ask, okay? He started to speak, and I interrupted him, "Please don't just keep saying it's fine." He looked at me for the first time and said, "Yeah, okay, if I need it, I'll ask you, hey, what's your name?"

Sometimes community exists but sometimes a little push is needed to gain entry.

Why is the Window not Open?

 This story is about a hospital. Let me say this again, it's about a hospital. When you come in there are usually wheelchairs everywhere. So they are familiar with the rolling classes. We arrived early enough for me to have a fight if I wanted one.  I was going for a test that I knew would be uncomfortable so my nerves were already frayed. But when I rolled in and was directed to the desk where I would be screen. There were two windows open. Both of them were set for people who were walking, I could only crane my neck up. As a result, they spoke to Joe who was accompanying me.

Joe knows that I don't like this happening but he was responding to the structure of the place. I couldn't hear their questions and they couldn't hear my answers. The frustrating thing is that right there beside them was a window set at an accessible-height clearly marked with a Blue Disability Sign. When done, I rolled back and told them that I had been to the hospital for tests several times in the last few months and I'd never seen it open. That made no impact so then I asked bluntly. Why is that window not open?

You know the answer they gave me?

I shit you not.

"It's not open because no one is sitting there."

If they thought that an answer or explanation, they were going to be incapable of understanding. If they have it but don't use it, they don't have it. They get to be happy and get to point out on tours by any of their funders that they are accessible. But they don't get the idea of accessibility, the will to be accessible, the desire to serve everyone equally. 

Wouldn't you think that a hospital would always have that one open? It's accessible to everyone. But we aren't a part of 'everyone' we are a part of those barely worth notice. As a disabled person, entering a healthcare facility, nervous and maybe a slight bit afraid seeing this kind of structural barrier, right beside something that would be workable but isn't used because the staff prefers not to use it. One wonders if that kind of bigotry will carry through to the doctors and nurses that will serve you.

The great thing is that the doctors and nurses at this hospital are amazing people. Not only are they really smart, not only are they way more than competent, but they are also kind and welcoming, and treat each person as a person.

So once past the barrier of indifference and subtle hostility, it was a fine visit. My test was done and I was told my results ... I'm fine.

Laughter

 Laughter.

That's what I will remember from this weekend. Ruby and Sadie are old enough to take care of themselves and therefore haven't been staying with us on weekends as they have done for many years. This weekend, cause we were really missing them, they came to stay.

They bring with them, even in the dark times of the pandemic, something bright and brash and bold. From the moment they enter our home, it's like a piccolo played by an elephant, with noises both surprising and chaotic. They are, after all, still young. We, on the other hand, are old. Or 'near death' as they would have it. 

Sunday we settled down for a good old games afternoon. We played crokinole in teams. Ruby and I took on Sadie and Joe. We are all, by nature, competitive, so a games day is something less than a blood bath but something more than a blood feud. We were nearing the middle of the game when Sadie had declared that she had scientifically scoped out the board, demanded that we all take our arms off the table and that we be completely quiet. We looked at her as her brow formed in concentration. Then. She took her shot.

Somehow she hit the playing piece in a manner that threw it simultaneously up into the air and back into her face, hitting her in the forehead.

An explosion went off.

Everyone laughed with abandon. Joe was leaned by in his chair crying he was laughing so hard. Ruby was bent over and Sadie had collapsed on the ottoman and I was sat upright laughing as loud as I have ever laughed.

To me suddenly they were 'the girls' again. Their laughter had freed them from the burdens that being a 'young woman' puts on them. The little girls we loved were in our home again.

About an hour later I noticed Ruby walking down the hallway towards her room and she, once again, was a beautiful young woman, her height and her carriage signifying her status as an 'almost grown-up woman,' glancing at Sadie and she too was back in her body a tall and graceful girl. We love them too. We love watching them grow and become powerful women.

But oh my, it was nice visiting with 'the girls' again.

Talking to Me

 COVID has had an odd effect on seemingly a lot of people. All disabled people know the phenomenon of total strangers smiling at or greeting with a friendly (like to a Labrador dog), "Helllllllo.' This has skyrocketed and I'm greeted by strangers at a near-constant rate. Something about the lockdown has people trying really hard to be overtly nice.

But they aren't addressing me.

They are addressing DISABILITY writ large.

That I'm in the chair versus anyone else in my chair is irrelevant.

When people say that they are just being kind, you can't actually be kind to a wheelchair or the abstract concept of disability, you are kind to people, living things. And that's not me and it feels weird to be acknowledged and not acknowledged at exactly the same time.

But a few days ago, I was finishing up on the cable machine at the gym, a total stranger stopped on his way by. I've seen him many times before but we'd never spoken. That day he stopped said hi and asked if I'd missed the gym like he did during the last lockdown. I said that I did and we chatted for a wee second or two.

I enjoyed that because he didn't speak to my chair or my disability, he spoke to me as a fellow gym member as someone who shared something with him. Human to human.

It's this kind of social contact that I miss.

The other kind makes me feel lonelier than I've ever felt before. 

Singled out and disappeared is an odd act of violence that I'm not sure the privileged understand.

So it felt good to be referred to like another human rather than the occupier of space within a wheelchair.

Gym Tales: 11 at 11

 It was near 11:00 AM when I was finishing with the cable machine and switching over to the ergonometer. Joe was switching from the ergonometer to the standing bike. I approached the staff to ask them to shut the music off or a moment of silence and found that they had already planned that and someone was just there to click off the radio that blasts through the place. When 11:00 hit, the radio was turned off, and even though there had not been an announcement that it was the 11th hour of the 11th day and that was the moment that Remembrance Day is officially marked.

I was astonished to see that everyone stopped. Weights had been set down. People got off the machinery and stood silently beside it. Just then, a man with an intellectual disability got off the bike which faces away from the room,  which he was on and turned and headed towards the stand to get cleaning wipes for his machine. His footprints echoed loudly in the silent room. And then. They stopped. He had looked around, seen all of us still and silent and he, too, did not move a muscle.

A deep silence now filled the space.

No words.

No movement.

No trumpets.

No prayers or parades.

Just silence.

The music came on and it was clear that everyone had been quite moved by the moment, that a real tribute had been made. The man with the disability marched back to his machine - he was furious. He muttered something about not knowing.

But he need not have worried, his ability to read the room, to take in the expectations from his surroundings was remarkable. He wants to be part of the community, and in that moment, because of his skill and his skill alone, he joined as a full participant.

My Father's Wars

"Here's your mother ..." that's pretty much all my father would say upon hearing my voice on the phone. He never said, really, anything. No greeting. No question as to my well-being. No inquiry into my job. Nothing. He knew that I traveled all over the world, that I was prolific in my publications, that I was respected in my profession. I really wanted that to matter to him, it didn't. I wasn't one of those who whined about needing affirmation from a father, except, sometimes. I really did want to make him proud.

But the bar had moved so far away from his ability to feel proud of me, or even acknowledge me when he discovered that I was gay. We had no big explosion. We had no coming out scene. There was just this silent, quiet death of a living child. He didn't know what to say to me and he didn't seem to want to learn, so I became the call that was handed over to my mother.

Once, I made a comment to my mother about Dad's refusal to speak to me. It was made in a moment of weakness. I knew she would talk to him about it and I kicked myself for having been weak. I knew that any call that came would be one that he was forced to make. And he did call. The next day. I paused, stunned that he was on the phone, and I immediately felt sorry for him. I said, "Dad, you don't have to call me because mom told you to." I wasn't angry. I just wanted him to know that he didn't have to do what he was doing.

He became very angry at me.

Swore.

Hung up the phone. 

That was my last call from my father.

Years later I would talk to him when he was hospitalized and my brother was away. My brother was very dutiful towards my father and they had a very good relationship. But on occasion, I was called upon to talk to doctors and get information that I would translate to my father. My father never questioned doctors, but I did. Those calls were brief but cordial and I was relieved that we had seemed to resolve something.

But then.

My father became very sick. He was hospitalized and not expected to live for a lot longer. Joe and I traveled to where he lived and visited him in the hospital. On my first visit, I had determined to thank my father for something that he had done for me, something that changed my life, something I am today still grateful for. I had never done so and now seemed to be the time.

I nodded to Joe silently asking him to leave for a few minutes. Then my father and I were alone together. I told him that I had something to say and he braced himself. I thanked him, and started to cry when I was done, I said, "I thought you should know." My dad said, "Well, you certainly found your place in the world." Soon after Joe came back in.

Then we all talked. When I was younger I had asked Dad a few questions about his time serving in WWII and he had very little to say. He didn't like speaking about the war and kept his time there pretty close to his chest. But now, he began to tell stories from the war. He was a remarkable storyteller, I never knew. I never knew. He talked and we all laughed and it felt, like for the first time in years, that I actually had a father.

My father's war wasn't one that he talked about. But that day, on his deathbed, he shared some of the funny moments and talked about some of the people he remembered. I got the sense that every day was Remembrance Day for my father.

But then there was the other war. The one he fought right to the very end. The war that he had with his understanding of masculinity and a son who didn't fit. From the start, didn't fit. The son who at 16 had fallen in love with another boy, and who didn't hide it. The son who in kissing his boyfriend killed his father's hope.

He won that war, in the end. 

For about 20 minutes.

And then I had to leave. I was never to see him again, but when I called, he spoke with me.

"Like"

 I can't even tell you how much I hate them. They are exploitative, they are cruel, they allow people to gawk and then relieve themselves of guilt assuring themselves that they have love in their hearts as they press "like." You've all seen them, the most recent was a picture of a small child, with facial differences, looking up at the camera and smiling, and then the 'show me I'm beautiful' or 'no one will wish me a happy birthday, will you' or 'surround me in a circle of hugs.' I respond to each one of these simply stating, 'this is exploitation, stop it' and to my consternation, even that comment gets 'likes' from the poster of the image.

I wonder how many of the people who look at these pictures see, actually see, that most of the people within them, members of the disability community, are fucking smiling up at the person who is taking the picture. That's right smiling. They don't look desperately sad - although most of the viewers must think that they must be sad to be like that. And in an instant, those in the image are objectified, made unhuman, made different.

One wonders if the people who like the image would actually like the person in the picture, or even give them a chance. In the real world, people are prickly and demand respect, they are blood and tears and sweat and smells and challenging and unreservedly ungrateful for patronization. No, it's easier for the viewer to sit snug in their blankets and snugger still in their self-satisfaction and privilege. Oh, what it is to be the viewer, not the viewed.

The internet can be a cruel place. And it can allow cruelty to go unnoticed. The poster of the image gets to be the poster of the image. That means they've looked at the picture and seen something that isn't there - a need for anything from you, and instead seen something pathetic and pitiable and a lovely opportunity to munch on the realization, never spoken, that the like button has been weaponized to devalue someone different from you.

Fuck that.

I've Another Email to Write

 Today everyone seems to be attending Zoom meetings and though it takes a little getting used to, it's a safe and convenient way for us all to meet. (I sent out my very first Zoom meeting invite on my brand new Zoom account. Although I've actually had it for a while, I used it for the first time today, but I digress.) I found something interesting happened yesterday while meeting. I was meeting with a group of people only one of which I knew before the meeting.

In the meeting, I was an active part, something that should not surprise you, and about halfway through I 'came out' as a wheelchair user. I was sitting in my chair during the meeting but the camera does not catch the chair because, um, I'm in it. Something strange happened. Subtle changes, I acknowledged less often by the chair and my ideas were packaged and parked in that space between 'not recorded for the minutes' and ' would you please shut up.'

I tried to point out in the meeting what had just happened and that the big reveal of my disability diminished people's respect for my ideas. Gosh, they got angry ... at me. People don't like having their prejudice pointed out to them. People don't want to acknowledge the privilege of always being considered legitimate. So, I was seen as a disrupter. 

I received an email two days later saying, in effect, 'thanks for your contribution, we don't feel that it would be necessary for you to continue on this committee.'

Okay.

I was there as a volunteer from the start.

And now I'm not.

I guess we should just eat shit for dinner and thank the asshole that served it up.. That's not my way.

And this isn't over.

Baby It's Cold Outside

 You can tell winter is here.

The snow is the first hint.

The reduction of wheelchair prints in the snow is the second.

This is a tough time of year for me, The wheelchair being metal turns freezing cold in an instant. I managed a few years ago to sit in the chair, with my skin a wee bit damp from a shower, and freeze my ass to the frame. It was a comical few minutes as I detached from dignity in order to detach myself from the chair. It's not a mistake I made twice.

I was planning on going out yesterday but gave way to a need to nest in the warm. I stayed in. Today, I'm venturing out. We'll leave in a few minutes, I want my skin to dry. And I marvel in my choice to do what I will, even at the spur of the moment, I marvel that I get to make a plan and then reverse it, simply because I want to.

We talk about the rigidity of people with disabilities and their love of routines but we don't talk about how we react when a plan has changed, when a person says 'no, I don't think I'll do that today', or when someone abruptly changes their mind about something.

Then you see rigidity.

Then you see encouragement that looks like force, that looks like coercion, that looks a little bit like violence. Voices get louder, prompts get more insistent, verbal becomes physical.

I have the luxury and privilege to be an old man in a wheelchair married to an old man in slippers. It's pretty easy to make and change plans.

Community living is often seen as where someone lives and where they have access to - rather than who they are and what choices are available. A home in the community is one thing, but being home in the community matters too. Being in control of what happens within four walls as well as what happens outside of four walls.

I was freer yesterday than anyone 'encouraged' to be outside.

And I'm grateful for that.

Tut Tut

 Do you ever fall into the stereotype trap and not even notice you're caught. That was me. Today. It was freezing cold out and when I attempted to take my wheelchair for a run, my fingers almost froze off. The biting cold of the metal was making a feast of my fingers. I knew I was going to have to change into my bulky winter gloves and was sorrowful at the realization.

Then, once in the car, seat warmer on, my side of the car 5 degrees higher than Joe's side, how does that work, and feeling warmth creep back into my fingers. I noticed a young man with an intellectual disability making his way through the parking lot towards the mall. I've seen him before, always on his own, always walking as if he had very important business, which he may well have.

But in this instance he was in a flimsy jacket, open to the elements, and a light tee-shirt underneath. I wondered to myself, with some hostility, "Who let him go out of the house dressed like that? He'll catch his death." Then went back to enjoying the warmth in the car.

My brain tapped at my temple trying to get me to notice something. It wasn't for about 15 minutes that I gave in and thought about the day. Something was bothering me. I thought of my hands, the gloves, the hill, the car, the warmth and then I thought about what I thought about the young man with an intellectual disability.

"Who let him go out of the house ..." I'm assuming that someone let's him out, that he doesn't do that himself. I'm also assuming that it's someone else's responsibility to dress in a particular way. I also noticed that I see other, non-disabled teens and young people out dress similarly and I tut tut and leave it alone. I don't see them as under the care of someone whose life is centered around done up jackets and warm mittens. That's their responsibility and the teen years aren't big on responsibility.

The bias that I have, even after all these years, can slip by almost without notice. I need to get better at getting disability, and I hope to do so before I see him again. 

A New Week Starts

 This was a stressful week. A lot of really early morning and a lot of online lectures, meetings and, webinars. One of them was a brand new lecture that I'd not done before that had me wild with anxiety, others were old friends revisited and updated. Because of the spacing of the events, I haven't been able to go out this week. I'm not one for going out after 5, I'm too tired by then.

I think it was Wednesday when my will collapsed and I gave up exercise and couldn't care about what I ate. Too, I think that's when I became a little bit grumpy. If Joe were writing this he may express that differently. Let's just say I wasn't the ray of sunshine he expected when we married.

Joe understood the pressure I was under to perform. He knew that I'm adapting to lecturing and not seeing anything but myself on the screen, not getting any feedback or energy from the crowd. He knew that I was terrified of bombing with my new material. He knew all that and was massively understanding all the way through. 

But I wondered near the end of the week how long his patience and forbearance would last. He's a great guy but sometimes my anxiety spills out of me in ways that involve anyone around me. I pulled it in and made it through the week still married and still comfortable in the love that I live with. But I need to remember that Joe's love for me isn't expected to be bottomless and I need to remember that I have to control myself a little bit more.

So I'm up early today. I can't be Little Miss Sunshine. But. I have polished my dome and can reflect any sun that come my way today.

Don't take for granted the love that you are given.

It's a gift you don't always deserve.

Discombobulated

 I slept in this morning. Until 9:00 AM. I woke up to Joe reading and before even rolling over I asked him what time it was. There was a disturbing amount of light in the bedroom. He told me that it was just past 9 AM and I panicked, really panicked. I got up right away and as quickly as possible I was dressed and ready to face the rest of the day. No time for exercise. No time for a leisurely breakfast. Yes, I'm retired but I still have expectations to meet.

Normally I'm up between 6:30 and 7:00, and I like that. I check emails, look at Facebook, Then choose an exercise routine to start the day with. By the time 9 rolls round, I'm fully prepared for the day. This is my routine. I like my routine. I was thrown for a loop by this change.

Joe says that I slept in because I needed the sleep.

He thinks I should just get over it.

But it really has rattled me.

You probably think, "There he goes making too much of too little."

I have a response to that but am too polite to write it here.

I have always understood the importance of ritual and routine. I have always enjoyed the structure they give my days and it makes me feel like I fit into the flow of my day.

But I hear that so many disabled people living in their own homes but under the control of others, that they are too routinized. In my history as a Behaviour Therapist I've seen so many referrals wanting us to introduce change into the lives of people with disabilities, get them off the dependency of their routines. What? When investigated this is always for the benefit of the staff and rarely for the benefit of others.

"He always goes to McDonalds."

"She always wants coffee from Tims."

Big whoop.

Who cares?

Oh, you'd like to go somewhere different.

There's a solution to that.

Your own time.

So much change swirls in the air around people with disabilities that their desire for routine is simply healthy and way to feel that they have some control, some predictability. I think I'd have a hamburger every day if I never had the same staff more than for a week or two, or if I get moved when my bed is needed for someone else and I'm moved without my consent. 

Leave people alone for gosh sakes.

Let them have rituals.

And don't try to tell me that my feeling discombobulated today is silly. But if you do, get ready for an unadulterated two word response.

The Stoop

 Weird how some things happen.

Three weeks ago I bought a set of three black masks that came sealed in a package. The mask I've been wearing was made by one of my staff at Vita, and I really like it. I bought the new masks because the one I use all the time is slowly losing its elasticity. But. Even with the new masks all sealed up in my bag, I never switched over and they just waited in my bag.

Until.

I was waiting outside the liquor store in the mall and had been for some time. The pandemic apparently isn't hurting the liquor industry. There were two other people waiting outside the store with me. One was an older fellow who spent his time on the phone, the other was a homeless man who had mental health issues. We all stood equidistantly about 6 feet apart. The homeless man was holding his shirt up over his face. This caused his body to contort because he had to pull his head down to get the shirt up over his nose. 

Finally, he slid to the floor, while holding his face covered. He pulled up his pant leg and there was a huge scabbed-over wound on the front of his right shin. It looked painful and there was relief on his face in getting the fabric off the unprotected wound. He and I waited in comfortable silence waiting. When Joe came out of the store, I turned to roll away from him.

But.

Though we had not spoken.

That did not mean that we hadn't connected.

I had seen him.

He had seen me.

I turned my chair back and said to him, "Would you like a mask? I have a brand new one in my bag if you'd like it."

His eyes filled with tears, "I would love one," he said, "you are an angel."

Joe got the package out of my bag, I ripped it open, and then Joe took one and gave it over to him. He put it on, immediately, and dropped his shirt allowing him to sit upright.

"Thank you," he said.

"You're welcome," I said.

And that was that. I wondered about the vague feeling of comradeship that I felt with him until this morning. At church, online of course, there was a reading from one of Harvey Milk's speeches and then the minister expounded on it. The topic had been Harvey Milk's belief that we all need to sit on the stoop together more. We all need to see and interact with our neighbours to stay real and to stay connected.

I think that was it.

We had each sat on the stoop, unspeaking, but sharing space and time.

In doing so, he became my neighbour.

And the expectation becomes the commandment, "Love thy neighbour."

Sofas and Couches

I was attempting something very difficult, something I'd failed at before many, many times over the course of my life. That I was making this attempt even shocked me, I'm still occasionally surprised at a decision my mind makes somewhat independent from me. I began with the expectation of failure and sure enough it was hard when I started, much harder than I expected. The was an old challenge that seemed new again.

Continuing on, I found that I had to push myself through the voices that formed in my head. The one's that told me I was stupid, that I was fat, that I was ugly and that I'll never amount to much. The one's that told me that I wasn't strong enough, I wasn't focused enough, that I wasn't good enough. The one's that told me that I was worthless, that I was useless, that I was nothing but a disappointment.

Those voices were loud. Really loud. For each one of them I heard the voice, knew the person who spoke it, and recognized the desire they had to pummel me into giving up.

Like many people, these voices live, and they become active when I begin to believe in myself, when I begin to try to become someone a little different, a little newer, a little prouder.

Once I was past those voices, they are always lazing and call at us from couches where they lounge eating chocolates, then it was clearer saying.

Why does the voice of every bully and every hater have space in my head?

Why does my mind allow this?

I think they are invaders send from a past time. I think they are from people who never think of us now, who may not remember why they decided that cruelty was the path they'd follow with me. Why are so many of them teachers and other adults who surely know better.

A new voice has taken a spot on the sofa, I managed to do what I've not done before, yes it was hard but also yes I will do it again.

I will for the rest of my life try to control the voices that sit too comfortably in my head.

Hills and Roads

 It's a weird thing to remark upon, but I have battles with drivers of cars in the mall parking lot. As I think you know I am trying to keep my strength up and get decent exercise by getting out of the car and then rolling way down a hill, further and further each time, and then pushing myself back up. I only rarely now get offers for help pushing myself, covid has made us wary of strangers and their touch. But when I arrive back at the car, I pull up to the road I need to cross in order to push up and into the mall.

It's a busy road but I've found the drivers really respectful of me and my need to cross. I don't like feeling rushed to cross and then heave myself up the curb cut. So, I usually wave people along to pass me so I can both catch my breath from the climb and wait for a legitimate break in the traffic. Sometimes this means that I have to wave by 5 or 6 cars.

And that's where the dueling begins. 

I wave at them to pass me.

They wave for me to pass.

I shake my head and wave to them again.

They smile and wave for me to go.

This continues while cars line up behind them. Once they've gone and are moving, the other cars are easier to shoo along.

When the case is clear, I have breath and power and then do the last big push uphill and into the mall.

I kind of think that this is a wee bit lovely. They are pausing and giving me time and space to pass. That's all I've ever wanted. That it takes a wave or two to get them to move is of little consequence. They are acting in good faith with me and I with them.

In these days of darkness, the pandemic clouding all of our lives, it's nice that we haven't devolved into screaming and ranting, it's nice to see the Canadian heart rise.

Because Love

I am getting reading to do a lecture/workshop next week on serving people with intellectual disabilities who identify as LGBTQ and am therefore running through my memories of those who I have served. I remembered in particular a man I was working with when I was in the sexuality clinic. The clinic was only into its second or third year and had an advisory committee overseeing many of the decisions that were made in service to people who'd made serious sexual mistakes or offended. He came to me one day and asked if he could speak to someone gay about being gay because he had some questions. He knew that I was gay, but I was also part of the system, a system that he didn't trust.

As an agency, we discussed this up, down, and sideways. We didn't want to be accused of leading people down the garden path to homosexuality, which is I believe, the only way you can get there. But finally all agreed that the request was independently made and we needed to honour it. I looked around and found no one who felt competent to talk to this man. His disability frightened people away - "I don't know what I'd say" to which I said, just answer his questions.

Finally, I found a gay Baptist minister (!) who was willing to meet with him. The day came and I met the minister about half an hour before the man who had requested the meeting was to arrive. We talked and he was a wonderfully gentle man and took what he was about to do seriously. When the time came I brought the two men together in a large office, I made to stay and was asked nicely to leave. My heart skipped but I acquiesced. 

They talked for about an hour and when the door opened I saw the man I supported smiling, he thanked the minister and then me. I asked him if it was okay for the minister to tell me what they talked about and he said that was fine. I closed the door behind me and sat down.

The minister told me that he had only one question, "Can two men love each other?" At first the question was misunderstood and the minister started to talk about sex and consent but he was stopped. "No, I asked if two men could love each other, not can two men have sex together, I know that."

Love.

That's what he wanted to know.

Can two men love each other?

It's a more difficult question than you might think because in an agency or a group home your rights to a sexuality are adjudicated by the people who say they work for you. Even today, years later, that can be a dangerous question for someone to ask. It can get you punished. It can get you hurt. It can get you marked for abuse and subjugation.

But.

Love, he was told.

Was possible.

He left happy, he left with his heart full, three years later he was in love and preparing to live with his boyfriend. Because love. 

The Cup on the Shelf

 When we went to bed last night Joe told me that if I was up first to be aware that the kitchen hadn't been cleaned up and I'd come in on a mountain of dishes. I told him that I didn't mind doing them, and in fact, I don't. 

Sure enough in the morning, I go into the kitchen and turn the light on, and organize the dishes and then do them. Now, I don't air-dry dishes. I like to dry them and put them away, I don't like a pile of dishes left to air-dry. I think it looks messy and I hate when going to do the dishes to find I have to put away all the ones left first. But that's me. Joe disagrees. We don't talk about it anymore, he does it his way, and I do it mine.

But that's not what I wanted to talk about. Something happened when I was drying the cups. I normally leave them on the counter for Joe to put away because they are on a shelf just out of my reach. But when I put the plates away, somehow, at that moment, the second shelf seemed almost in reach. I haven't tried for a very long time and I thought that stretching is a big part of my exercise routine.

I picked up the cup and reached, couldn't do it but I was close. I moved my wheelchair alongside the counter and tried again. Plop, the cup was on the shelf. I was jubilant.

Now here's the thing. If someone sat me down a year ago and asked me what my goals were, I'd never have said putting cups of the second shelf. I would have given other goals that would have me taking more care of our place, but not that one. I'd ruled it out. It's weird to say that my dreams weren't big enough to include one little task.

And there's the thing.

Dreams need to be vast.

Dreams need to encompass impossibles.

Dreams need to go from tiny to gigantic.

And my dreams do not need to meet your approval. You do not have the right to scrutinize and criticize my dreams. Saying, laughingly, "Hingsburger's big dream was to put a cup on the second shelf, what a loser," disqualifies you from being welcome in my life.

And here's another thing.

Dreaming has to be taught. It's a skill. People with intellectual disabilities, like a lot of people, maybe some of you, have had their dreams dimmed by a lifetime of reduced expectations and a thousand voices with a million opinions weighing down the lighteness of dreaming into the darkness of goals set for the needs of others. The burden of this bends the back of our will and stunts our ability to dream.

Here's what I'd like to see on a plan:

Teach dreaming.

Here's what I'd like to see done.

Dream following.   

Backed into a Corner

 We went into a shop, a small one, because we wanted to see something that had been displayed in the window. We approach the young woman who works in the shop only to find her quietly telling a man, who is not listening, to put his mask on. He is talking about an app on his phone and how wonderful it is. He opens the app and it plays a military kind of anthem. He keeps walking towards her, she keeps backing up, he's talking loudly to be heard over the music playing. Her hand is up. But stop did not mean stop to him and he kept advancing. She was being backed into a corner with no escape.

We took all this in in an instant. And it took an instant to respond. She was talking to him trying to take control of the situation. Would our help be wanted? Would we be intruding on a battle that she needed to fight on her own. I didn't want to take from her the victory that she would feel if she got it under control. Was my urge to intervene driven by sexism or by her actual need? Then I thought, hell, if I was a woman I'd probably intervene too. Then I thought I'm not a woman and can even presume to know what a woman would do.

All that thought took just enough time for panic to show on her face. She didn't even notice that we were there. And though we were in plain sight, neither did he. I rolled forward, Joe was right behind me. I spoke loudly "Hey, where is your mask" I figured it was safer to call him out over the mask than his behaviour towards the woman in the store. He turned towards me briefly and in that moment I saw her dash to the desk to call security.

Joe and I are not people who have threatening bearing. We look like shmoos, or maybe schmucks, who could throw a punch into a bowl. But he eyed us up, forgetting her for the moment, advance towards us and then brushed by us heading to the door where he was stopped by security.

The woman thanked us for intervening and helped us to see what we'd come in looking for. She rung us in and sent us on our way.

She looked very tired.

At home I wondered, was she tired because a man kept advancing on her in the store.

Or was she tired because we intervened in a situation that she felt in control of.

I don't know.

Speshul Indeed

 The gym that we go to has two entrances. We are expected to use the lower entrance because the gym is just inside the doors. However, while that entrance is technically wheelchair accessible, the experience of it isn't. It's made up of big square pieces of concrete that are pushed together like giant bathroom tiles. But the difficulty is that each of those has settled differently and a pushover them means being jousted around in my chair. Once I was almost thrown out of my chair when my front tires caught in a deep hole between the slabs. 

Because of this, we always entered at the other door. That entrance is extremely accessible. When the pandemic hit and when the gym opened again, it was determined that the rule was we had to enter via the bottom entrance. I spoke to them, told them of the issue I had with coming in that way, they were awesome. Really awesome. They went through the procedures we'd need to go through coming in the door we wanted and our names were put on a list that approved the really accessible entrance for me.

This worked well for weeks and most of the people who work that door know who we are and know to admit us without any questions except about covid symptoms. But yesterday someone new was at the door and she directed us to the other entrance. I explained to her that if she checked she'd find our name. She kind of made a big production of going with us and going to let them know at the other entrance, where we always check in again, that we were coming.

As we got on the elevator she made the comment that we came in that way because we were speshul. I grabbed the elevator door and said, "We aren't special, this door is more accessible," in a very stern tone. I was angry. Really angry.

"Special" is a term I hate in reference to disability and it's often used in that mocking tone that lets you know that your rights as a disabled person are seen as a gift or candy given to you to make you happy. My rights are not 'Special' in this case it was the right to access. When you consider what disabled people want, and I'm not speaking for all disabled people, none of the things on the list are "speshul".

Access

Opportunity

Equality

These aren't gifts that we want they are rights we demand. They aren't 'speshul' they are things that form the basis of the struggle of disabled people for a seat at the table, a piece of the pie, a voice that is heard.

I'd love terms like 'special' to go to the dump heap of history beside all the other words used to separate and denigrate people.

I'd love to hear from you about the words that you find galling or upsetting when used in reference to someone with a disability. 

With Maple Syrup

 OK, now I can start.

I had opened blogger to write this post when I saw out of the corner of my eye that last evening's dishes weren't done. Typically Joe does them before we go to bed, but as we've been staying up later and later because we realized that retirement doesn't have a bedtime sometimes the dishes aren't a high priority when a warm bed calls. I turned away from writing and set about doing the dishes. Joe had them organized, which is half the battle, and then I washed them, dried them, and put them away. I'm now back.

As I mentioned before, one of the fitness folks that I follow and work out with, he on YouTube, me on myself commented that as you gain strength and gain flexibility you need to use them in everyday life. He suggested that working out was worth little if it didn't change the rest of your life. So, I've been trying to incorporate into my day times where my strength or my reach is naturally needed. Doing dishes is one of those things. I notice how I can now reach higher into the cupboard to put things away, I notice I have the strength to lift some heavy items up an into a cupboard that has been out of my reach since we moved here.

Let me pivot here to our support of people with disabilities. We can spend so much time teaching them things in classes and then never let them use it in real life. One woman with a disability learned to make several meals during her cooking class at the day program but was not allowed into the kitchen of her group home. She had learned a skill that's important for two reasons, it leads to greater independence and it leads to a sense of contribution. I don't do dishes for Joe's thanks, I do dishes to contribute to the running of our home.

Skills matter.

Strengths aren't strengths unless they are used.

Why do agencies who forbid sexual behaviour pay consultants to do sex education classes?

Why do rights training when schedules and rules and staffing disallow or make impossible the free use of rights?

Now of course I believe that everyone has a right to learn about their bodies and everyone has a right to learn that they have a voice and they need to use it - but you can see the position that people with disabilities are put in. If they exercise what they learn they will be punished.

I know this because that woman who learned to cook, was home sick one day and the staff popped out to the store when she thought that the woman was asleep. She came back to the smell of French toast coming from the kitchen.

She lost 3 tokens on her program and the staff ate the toast.

Uddle

 I really had to go.

But when I arrived at the accessible family room, it was occupied. I waited, patiently. For a very long time. I realize that time slows down when you are having a conversation with your bladder, but in actual literal fact, it was a very long time. I was just started to head over to the elevator to go up to the other one upstairs, calculating my ability to roll and hold at the same time. I watched with envy as people flowed in and out of the other washrooms, no line up there, and began to push. That's when one of the cleaning staff came along. She asked me if I had been waiting long. I said I had.

Instantly she pounded on the door. It opened right away and three teen girls came out of the toilet. The cleaning woman was having none of this. She stopped them and let them know that what they had done was act with pure selfishness. Did they see me a disabled customer waiting for the room? I piped up and said, you know there are only two of these here, using it when you don't need it can cause a disabled person to embarrass themselves. 

But the cleaner wasn't done. There followed a lecture and at a certain point I saw the initial shame the girls felt for using the space wantonly turn into anger and annoyance and I knew the cleaner had crossed a line and now the point would become the cleaner and not the original mistake.

That's the thing with advocacy, isn't it?

You need to stop when you've won the moment.

Also, if you are going to take on some teens about misusing a disabled space, you need to get out of the way so that the letter pee remains in the alphabet and not in a puddle..

A Warning

 One of the mistakes I made in my working life kind of intersects with my personal life. As I think about it, I don't really understand how it happened or, more precisely, how I let it happen. I worked very hard for many years and grabbed on to every opportunity that came my way. I remember reading a journal and thinking, "I have something to say about this." The journal had been publishing articles regarding deinstitutionalization because many provinces were moving toward decriminalizing people with disabilities, they had been locked up for the crime of difference and repatriating them to their home communities.

I had noticed something with the people I was supporting during this journey and that was that deinstitutionalization may have meant something very different to the people we supported than it did to us. To us it was an ideal, an advancement, but people with disabilities hadn't been asked they'd been mandated to move and they were expected to feel gratitude towards community staff for almost everything. The burden of gratitude can be wearing, we all know that. So, I wrote about deinstitutionalization from a different perspective and, wouldn't you know it, my first publication in a journal.

That's a big deal.

There's a shift in your perception of yourself.

There's a realization that some of the limits you've put on yourself are shackles and fetters that may be more self-imposed than one thinks.

And what did we do to celebrate this?

Nothing. 

We moved past it towards the next goal.

First book?

Nothing, I started another.

First award?

Nothing.

Now I don't mean that I didn't have a reaction to each of these. Of course I did. I always felt a boost, a change, and then I packed away the experience.

Now that I'm older, much older, and much is behind me, I ask myself why didn't I take the time, why didn't we as a couple make the time to celebrate. To crack a beer and toast the moment? Those moments are with me, but sometimes as a list of achievements that go in a resume that no one will read anymore.

Let me serve as a warning to folks reading this.

Take the time.

Make the time.

To celebrate your life. I've talked to all of my staff about this, warned them of a life that ignores accomplishments and celebrates none of them. I thought it would be 'too much about me' and that it was egocentric, it isn't. It's an honest celebration of an actual accomplishment.

Celebrate your life.

Celebrate your accompishments.

Live richly.

What Just Happened

 Just a couple of minutes ago we got off the phone having cancelled our Thanksgiving dinner plans. It was something that we were looking forward to and something that we'll miss but we felt was the responsible thing to do. Ontario's cases of COVID-19 are climbing and the government asked its citizenry to forego the Thanksgiving celebrations this year.

The one nice thing about this damn pandemic is that it is an opportunity to show our friends, our families, our neighbours and our country that we care about them, that we will take actions to protect them and that we are part of the active fight against this disease. My patriotism is not always on view. Now it's called for and it can be seen.

There is a mask on my face because I want others to be safe.

I wash my hand and publicly use hand sanitizers because I care for those working in stores and shops.

Quiet will rule at our house on Thanksgiving because I want to defeat this scourge.

The one nice thing about Thanksgiving, however, is that it can't be cancelled. No virus, no bug, no invisible army can put a stop to the act of giving thanks, of showing appreciation of expressing gratitude. No, that I do, that we will do together, and we will do it with the all the warmth our gay hearts can muster.

See my mask.

See my care for you.

See my sanitized hands.

See my commitment to your safety.

See our dinner celebrated just for two.

See my pride in being able to fight against this foe.

On Sunday, we will give thanks as we find ourselves awash in gratitude that we are still safe and alive and contributing to the world we live in.

Should We Become Aware

 Just reading an article that tells me that, in the United States, the disability vote has risen to by 20% since 2008 and that outstrips the mere 12% growth in non-disabled voters. If organized properly and if seen as a voting block, the disability community could hold the key to many states and districts, and potentially, the election at large. 

I found this interesting because, as I follow politics, during the United States election seasons, primaries included, I heard precious little in the way of discourse on issues that are specific to those of us with disabilities. Don't even suggest that most issues are of interest to people with disabilities because of course, I know they are but there are issues that speak directly to the disability community that benefits others as well.

But, I'd had to go looking for candidates' positions on disability issues. I had to double-check to see if there were any staff of any politician in the primaries that were prominent in their policymaking and visible in their presence. There were probably more but the one who had the highest-profile was a woman who was a wheelchair user who worked with the Buttigieg campaign.

In the future politicians need to be wary of ignoring a sizeable percentage of the population. We are growing not only in numbers but in awareness. As people shed shame and the obligation of gratitude, they become aware of something more powerful than even pride - rights.

Last mayoral election there were all candidates' meetings set up around disability issues. I attended those and found sizable audiences and a crowd that, to a one, had found their voice. A couple of politicians looked shocked like they thought we were a photo op, not a voting block.

Should we continue to find our place in the political discussions in the future, there's no telling, as we are a minority group that includes all minority groups, what we can bring to the table.

He Tells Me

 Without fail, I will hear from him at least twice a month. We met on Facebook when he requested to friend me and I accepted. When I accept someone I go to their page and if I see that they are involved in any way with disability or advocacy, or if they have some other commonality with me, I accept. I remembered him by the first visit to his page. He's a self-advocate with an intellectual disability and he's pretty outspoken. I liked that.

About a month later after I posted something, he sent me a message, "Are you gay?" he asked and I replied that I was. That was it. I didn't hear from him again for about six months. Then another message. "I'm gay too," he said. I said something about being out feeling good and again I didn't hear from him for a while.

Then again, "I'm gay," he said. "I know," I said. And that's when the pattern begins, he keeps telling me that he's gay. It's been a few years now and I have simply come to expect the message. Over time my responses have become more fulsome and I usually say something positive about being gay, and gay pride, and how much I love my husband.

But all I ever got back was, "I'm gay."

A statement.

Last time he wrote I asked him if he had a boyfriend, or if he went out to the clubs. I wanted to broaden our conversation a little bit.

He wrote back immediately.

"I'm gay."

"OK," I thought, "He's not going to engage with me." 

Then yesterday, two quick messages.

"I'm gay."

"They won't let me."

I wrote him back asking a few questions, but I've not heard anything back.

And now, I'm really worried about him.

"They" can be terrifying.

"They" can be cruel.

"They" who embrace their "They-ness" drink from powers segregated faucet.

A Committee of Five

 Yesterday, I had plans.

We'd booked time at the gym. We planned to get to the mall. There were some groceries to be picked up. 

It all came crashing down when I lay down to read for a few minutes in the morning. Suddenly the bed was warm, and outside was cold. Suddenly I relaxed deeply in ways impossible during employment. Suddenly, I was asleep.

Joe popped in and shook me gently. He asked if we should be getting about our day, and in that moment I realized that I was already getting about my day and I asked him to wake me in about half an hours. Two hours later I roused myself from a really restful nap.

I went from bed to chair, wrapped myself in blankets, set the chair to recline, and I snoozed through a movie I had trouble understanding because it was just a bit to the wrong side of artsy. The subtitles blurred and I was off again. Joe knows not to wake me when I'm asleep in my chair, so he simply let me alone.

Finally awake, we had tea and cookies and some companionable time.

We were going to cook.

We had leftovers.

What a joy it is to be in command of your own time. To have schedules be just schedules rather than objectives. To have the fluidity of the moment make a decision that can overturn other decisions, other plans. 

It was never more clear to me.

I don't live in a system.

Where my life belonged to other people and my time was governed by the needs of others. Where choices made on Tuesday were firmly nailed to Friday's door. Where my "now" was never a real possibility anyways. 

I don't live in a system.

Where my refusal is seen as behaviour, where my 'no' becomes 'yes' at the will of another, where there are real and dire, consequences to the choices that I make.

I don't live in a system.

Where the mood of another determines the course of my day. Where the notations made in a book determine the course of my evening. Where the graph determines what choices I am offered.

I don't live in a system 

Where choices are offered, and therefore can be denied. Where I get to do what I want only after I do what you want. Where my dreams are calibrated, then smashed into achievable goals.

No, I don't live in a system.

So I took a nap yesterday and snoozed my way through a day, that wasn't planned, that wasn't written on a list and, that wasn't approved by a committee of five.