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.