Friday, November 30, 2018

At The Pool


I was chatting with a friend who was telling me about going swimming with his kids at a public pool in Toronto. He goes there regularly and he and his kids love it and the time they get together to just play. He was telling me about something that happened, a funny 'you'll never believe what my kid did' story when he paused. "Have I told you about the guy with Down Syndrome?" he asked. I told him that he had not.

"I've been meaning to," he continued. He dropped the story he was telling and started a new one. He told me about this man with Down Syndrome who goes swimming at the pool. He sees him there all the time and he seems really serious about his swimming, spending most of his time doing laps and swimming hard.

The story wasn't about a guy with Down Syndrome swimming. It was about the fact that he's there at the pool without staff, without family, without anyone. He's just there swimming and doing his laps. He knows the lifeguards and fist pumps them when he sees them but beyond that he's in the pool swimming, lapping back and forth using various strokes.

When he leaves he waves to and says hello to those he knows and then, he's gone.

What's the deal.

My friend said that he had never before seen a person with an intellectual disability alone, happy, and completely independent. He's only every seen people with intellectual disabilities accompanied by staff or some other form of supervision.

He remarked that, unlike those with staff, this guy seemed to just be so free.

He wanted to know if freedom was ever the goal for people with disabilities or did we as a system always set goals that kept us in some kind of control. I bridled a bit at the question but said that I think that we collectively have defined freedom for people with intellectual disabilities in a slightly different way.

But freedom is freedom.

This guy in the pool, no matter what happens during the rest of his life is free there. In that space he's his own person.

Someone, somewhere, parents, staff, friends, who knows, maybe it was just him, decided that liberty was a concept open to him.

It's strange that this is still a radical idea.

But it makes a radical difference.

Tuesday, November 27, 2018

Weight or Burden?

Yesterday we were at an event with Ruby and Sadie and their mom. It turned out not to be a really 'safe environment' for me. I was subject of both whispered comments and stares. There wasn't a moment, the whole time, even when the main activity was going on, that I wasn't being examined, probed and judged by intense stares of others. It was also an environment that it would have been totally inappropriate for me to confront any one, or indeed, the room as a whole.

But what I noticed wasn't so much what was happening to me, but what was happening to Ruby and Sadie. They were there with me and as such were also stared at. The questions the eyes seemed to be asking of them, "Why are you with that big thing there on wheels." I state it that way because I don't believe I was fully human to any but mine during that time.

But the kids bore it all. It didn't deter them from spending time with me, posing for pictures at various spots in the room, laughing, joking and posing and just being kids.

But I could see that it was work.

I could see that it was intentional.

They knew better, and therefore behaved better, than anyone could have expected them too. I was proud of them for their courage, their defiance and their characters.

Difference brings with it challenges.

For the Different.

And for those who dare to love them.

My difference can be a weight on their shoulders but that doesn't mean I'm a burden. There is a difference. A weight is simply carried and burden is resented.

And so they carried me.


That's not true is it.

It's what we tell ourselves.

And so they carried the weight of other people's prejudices. They stood tall refusing to be bent under the pressure of peers.

They are not exceptional kids.

Loving or caring for someone with a difference or a disability doesn't make someone exceptional.

They are, in stead, kids with fully functional hearts and minds and souls. They are kids who decide for themselves what they will and will not accept. Me the accepted, prejudice they did not.

When I got home I relaxed into the comfort of our home. No stairs or stares in my place. I'm safe. But I took a moment to think about what happened.

One can get used to the courage of those who surround you with love, one can forget the courage it takes to stake a stand every time, every place, every occasion that they are out with you. i don't want to get used to, or forget this. I want to SEE the whole experience of disability and difference and I can't do that unless I see my experience in relationship to those with whom I am in relationship.

Disability makes a difference.

But not just for me.

Monday, November 26, 2018

If you have a mind to ...

If you have a mind too, check out my birthday fundraiser:

Monday's Coming

Related image
Photo Description: A bearded wheelchair user in a blue shirt is in his wheelchair on an 'ergonometer' and exercise machine for people to develop upper body strength. It's used by turning two handles, against resistance, one on each side of the machine in a circular motion. 
At the gym yesterday, I don't think I'll ever get over the weirdness of saying that, I was on the ergonometer and working hard. The one at my gym is different than this one and has the capability to be connected to the internet so you can watch things on YouTube. I typically watch and episode of 'Eggheads' a UK quiz show and then a few music videos until I'm done.

The Eggheads had crushed a team and now I was watching a playlist of 'Gay Love Songs' (don't judge me) and know most of them by heart. I try my hardest to not hum or sing along as I am so tempted to do. One of the videos started and somewhere mid video the man singing presents himself with words written all over him. The words were negative slurs about being LGBT+.. I noticed movement over my shoulder and immediately felt incredible fear. Was I going to get the shit beaten out of me?

Calming myself I noticed that a boy of about 14 was standing behind me his eyes glued to the screen. The video progressed and by the time the two singers, a man and a woman, had washed horrible words off their bodies, he was standing beside me, as if I wasn't there, watching the screen. He couldn't hear the music, he had no idea what was being said.

I'm done mid way thought the video, my arms don't feel like doing another turn but I dug down and we watched the video together neither speaking to each other. When the video was over, I took out my earphones and unplugged them.

"I wish I could do that," he said, "wash the words away, I mean."

"Is it bad at school," I asked.

He nodded.

"It gets better," I said feeling the triteness of those words, the future looms large for those with power and privilege, they vision themselves in a future that's bright and shiny. The future for those who are being hurt flickers like a light just about to die.

He turned to leave, and I said, "I'm sorry, that wasn't helpful. Let me try again. 'What is happening to you is wrong, those who do it are wrong, they are jerks whose aim is to hurt you and to humiliate you. They need to see you weak. Try on pride, it's the only weapon you have right now to protect yourself. If you can find someone safe to talk to, find them, talk to them."

His smile, when he thanked me was so sad.

It was Sunday.

School was tomorrow.

Words hold power.

"No Bullying Tolerated."

Words mock themselves when in saying them, the system believes the work is done.

Sunday, November 25, 2018

A Demonstration and A Suggestion

I'm going to tell you what we did yesterday, but I'm a wee bit worried about doing so. I don't want you to think I'm bragging or showing off in any way. That's not the point of this post. I just want to demonstrate one thing and suggest one thing. First I want to demonstrate how living life is an education, if you pay attention, that can change behaviours and create new patterns. I'll make the suggestion at the end of this post.

Yesterday as we went into the grocery store the police were there. They were outside the store at a table and they had parked a huge cruiser of some kind in front of the store. Interestingly, they parked it exactly between the ramp up in and the ramp down out. That impressed me. They were doing a food drive saying that they wanted to fill the cruiser to the brim with food for the food bank.

I pushed past them and returned their hello as I did so. Immediately inside the store they had pre-bundled bags of food in various price levels. This store always does this and we've bought them before and the have the three p's of poverty in the sack. Peanut butter, Pasta and Pasta Sauce. I pushed on into the store as Joe went to get a cart. I turned to face the door and wait for him, I saw him pick up a couple of bags and I waved at him to put them back. I had had a flash of memory and I wanted to do something different. He returned the bags to the shelf and came in with a question on his face.

"Do you remember," I asked him, "when we were in San Francisco earlier this year, in our usual grocery store?" We had gone there to pick up some groceries, it's in an area of town known for the obvious homelessness and poverty of some of those in the area. Joe had nodded in response to my question. "Do you remember what they locked up and what they told us about it?" We had gone to buy some shaving cream and found that the whole aisle of personal hygiene products were under lock and key.

This store had a whole aisle stuffed full of booze, but it was the deodorants, the shampoos, the feminine hygiene products that were under lock and key. When we asked why this stuff was locked up we were told that these were the most often stolen by people in need. They wanted them for when they were trying to get a job or trying to get clean or trying to keep their kids clean. This was a revelation to me.

So, we didn't buy the prepackaged stuff that would guarantee that only a few of the food back shelves would be full. We hit the hygiene aisle hard. Tooth brushes and tooth paste, deodorants, body washes, shampoos, toilet paper and soap all flew into the cart. Then we went for the feminine hygiene products and stood there, two gay men, who have never bought these in our lives, looking at a wall of choices and having no idea where to start with choosing. In other circumstances when I need to make a decision, I ask people. I felt that stopping a woman who was shopping and asking her to explain to us what might be the best choice for an anonymous recipient was a tad inappropriate. So, we picked on that we both agreed the commercials for assured us that, while using, they could ride and bike and wear a white bathing suit. After that we bought a bag of dog food and a bag of cat food, people do have pets. Finally, the only food we bought was three huge boxes of cereal. Family economy size suckers that looked like they'd feed a family of six for a millennium.

When we were done we did our own shopping and then headed to the check out. There had been lots of sales in the store that day so our donation dollars had gone a long way. We sorted our groceries into our cloth bags and the donation stuff into plastic bags that we could hand over. There were 7 bags, the toilet paper and the cereal taking a number of bags.

We went back out to the police and by then they were surrounded by the pre-packaged bags. We needed their help in getting the stuff out of the bag and keeping everything sorted. I told them about what had happened in San Francisco and why they were picking up the stuff they were picking up. They knew, of course, of the need for these things.

They thanked us.

We thanked them for doing the drive and helping us to remember this part of the holidays.

We got in the car and felt good, we'd done something completely different than we'd ever done before and we did it because we paid attention to what we learned this year. We knew that the stuff we bought would be appreciated.

I am NOT saying, "Don't buy food for the food bank." I am also NOT saying, "Don't buy the pre-packaged bags." Of course food is the major part of what FOOD banks need. And pre-packaged bags are easy and convenient. I'm just suggesting that when you do buy for the food bank, maybe throw in some deodorant and shampoo, or some feminine hygiene products, or anything really that someone may not be able to buy because they spend all their resources on food or housing. Poverty takes a toll on everything.

We'd had fun doing the shopping, it felt like Christmas, and we felt like we'd taken a key to that locked up stuff in the store that we'd gone into and said, "go head, grab what you need."

That's an awesome thing to be able to do. 

Saturday, November 24, 2018

Blood On The Beach

"I feel stupid all the time. I didn't feel stupid today."

This may be the best compliment I've ever gotten from someone with a disability who attended one of my self-advocate sessions this year. We had a short conversation after that statement was made. It was bit of a rush because the class was over and their ride was impatiently waiting for them to come. What made them feel stupid wasn't the regular kind of challenges and obstacles that are put in front of people with intellectual disabilities, no, this person lived within a system, with paid support providers, who made them feel stupid all the time.

I watched them leave and I saw the angry face of the staff who'd been kept waiting a few moments. Those few moments, the face showed angrily, were an inconvenience. The person I'd been speaking to was an inconvenience. Paid time or no, that time did not belong to the individual in service, it belonged to the staff who clearly had better things to do.

It concerns me that our system is set up to serve people with intellectual disabilities but ends up serving others needs:

- for employment

- for power

- for paper

- for social contact with other staff

- for control of the unruly

Of course I know that there are good staff out there, a lot of them. I know that. This person must have in their lives staff who are sensitive and who take time. That's the scariest part of this. The deep, deep, caring of of some of the best people in the world wasn't enough for them to feel relief from a sense of inadequacy. It's not enough that some are good. It's not enough that many are good.

We all know, from living in the real world, that sometimes it can take just one person to make us feel small, and stupid, and ugly, and worthless. We all know that no matter how many people love us and support us, that that feeling of being utterly and completely unworthy can dog us for a lifetime.

Intentional goodness.

Intentional respect.

This is what needs to govern our days.

"I pledge today that I will control my temper and my prejudices. I pledge today that I will make time to make others feel valuable and worthy. I pledge today that my tone will flow from my intentional desire to be respectful. I pledge today that I will watch my words, govern my actions, and control my impulse to impatience. I pledge today, to be a good person in relationship to those I serve, those I work with, and myself."

I read this every morning when I get up.

It's simple.

But I need to be reminded.

Because I am a human being and human beings have a penchant for cruelty and domination and anger. Human beings who have power over other human beings most often abuse it. I know that.

I've been hurt before.

That is lesson enough.

So I remind myself what it is to be in relationship to others. To be in service to others.

Because one good person isn't enough.

Two aren't enough.

We need to strive for there to be enough voices within the social service system that give the message of worthiness and value and importance to those who get constant messages of disapproval and unwelcome out there. We need to be safe harbour.

We. Need. To. Be. Safe. Harbour.

We are or we aren't.

I choose to try each day to end the day, without blood on the beach.

Thursday, November 22, 2018


The existence of ramps and cut curbs does not guarantee the existence of accessibility. Ramps and other adaptations are there because of legal requirements in regards to disability and need for access. Getting in and being welcome when you are in are different things.

We live in an era of contradictions.

We are aware that 'no' means 'no' but we continue to act as if 'no' means 'press on.'

We are aware that white men are most likely to commit mass shootings but black men are most likely to be shot by the police.

We are aware of privacy but post pictures of fat people eating in food courts with witty one liners under the photo.

We are aware of and even laud the concepts of 'welcome' and 'generosity' but we post memes against refugees and those of other faiths.

We are aware of the need for kindness and yet post pictures ridiculing scooter users in Walmart.

We are aware of bullying and yet we continue to do so at every turn.

We live in an era where we 'tut' the behaviour of others and spend no time governing our own behaviour.

Nothing changes.

Awareness doesn't mean change.

I have been travelling a lot. I have been working hard a lot. My job here in Toronto and my job that takes me great distances are both demanding. I get tired. I am tired.

Today I have to be out a lot.

I have to go into the world and push around places and go to appointments and do all the things that people do. 

And I don't want to.

I don't feel up to it.

The physical aspect of going out is something I'd enjoy. I like pushing myself long distances. I like feeling powerful in my ability to get where I'm going. I can push up ramps and roll down cut curbs. It's all good.

But I don't feel up to the other shit.

In a world where people are scandalized by reports of brutal bullying in schools and universities and work sites, scandal exists to titillate not illuminate the pervasiveness of the problem.

I am going out today because I have to.

There are things that need to be done.

But I don't feel up to the stares, from people who know that staring is wrong.

I don't feel up to the intrusive comments about my body, from people who know that shaming is wrong.

I don't feel up to the casual dismissiveness of my humanity from people who claim to have no prejudice.

So I'll go up ramps, I traverse cut curbs, I'll do all that.


Aware does not mean Awoke.

So, I'll need to dress up.

Put on my self esteem.

Pull up my self respect.

Put out my self regard and wrap it round me, tight.

Because I'm going out into the world, feeling vulnerable to those I meet. And I will protect myself. I know that I have value. I just hope and pray when I get home tonight, I'll still believe that. 

Wednesday, November 21, 2018


Travel back 25 years in time. Maybe a few years more. I was a Behaviour Therapist working with people with intellectual disabilities primarily in residential settings. I had been invited for dinner at one of the homes and had eagerly accepted. I wanted to just sit and be with people rather than have an agenda for every moment.

Every one of the people with disabilities in that house was fully verbal and very able to communicate their lives in stories. When dinner began it was much different than I expected. The food was good, and plentiful, people were eating it with relish. But there was no conversation. None. All social contact or requests for help were directed solely to one of the staff or myself. They looked at each other for nothing. One person, wanting the salt, asked the staff for salt even though it wasn't near her, it was across the table right by the elbow of one of the other people with disabilities who lived in the home.

Integrated with staff.

Isolated from others.

When I first mentioned this it was suggested that this was normal because they wanted to interact with the valued, not the devalued. It was further suggested that this was healthy behaviour and evidence that we needed to move quickly towards integration. It was finally suggested that my feelings that something was wrong here suggested that I was stuck in the old model of serving people with disabilities - that 'Normalization' meant that people with disabilities shouldn't be relating to one another or forming attachments with one another.

Not for the first time in my life I thought 'fuck normalization.'

I went back to the home and sat with with the people who lived there and talked to them about what they wanted. They were clear that interactions with each other had been discouraged and interactions with non-disabled people, only, had been encouraged. They were afraid to talk to each other and didn't even know how anymore.

That stopped.

After meeting with staff and meeting with various people who wanted to have a say in whether or not disabled people could talk to one another, I was given the approval to go ahead. It took but a week to get conversation going at the table that included everyone and excluded no one.

Why am I telling you this now?

At Vita, where work I happened by a group of people with disabilities together, waiting for an event to start. They had all gathered before I got there, as I approached I heard this buzz of conversation and the occasional burst of laughter. This was a group of people who enjoyed each other's company. When I turned the corner I saw that it was a group of people with intellectual disabilities. Not a staff anywhere in sight.

It's moments like these that affirm the rise of the disability community. It's moments like these that affirm that pride, and identity are at heart of the disability movement. It's moments like these that make it clear that, despite our philosophy and ideals, the people who have disabilities are becoming a people, a community and a movement.

Some days it's great to go to work.

Tuesday, November 20, 2018

Bullied by Kindness

We went to the movies the other day, to see Bohemian Rhapsody, and when I got to the door of the theatre it was being held open by an employee there with Down Syndrome. I've seen him before and greeted him with a quick hello and a thanks for holding the door. I entered. At the bottom of the carpeted ramp up into the theatre I stopped to brace myself for the climb. Several people coming by asked if they could help, I said 'no,' and all respected my desire to climb unassisted.

It took a while to get to the top so I heard how the man with Down Syndrome was spoken to. He was essentially bullied with kindness. Soft tones asked him how he was doing, patronizing tones thanked him for doing such a good job with door holding open behaviour,  sad tones - communicating that his life is a tragedy - asked him how he was doing. He was stoic in his silent response.

Finally the last person that was coming in that stream was in and I was nearly at the top of the ramp, he caught up to me just as I crested the hill. He walked by with a dignity that others simply couldn't see. He was a man at work, doing a real job, with a real purpose. He wasn't the child/man, the infant mind/adult body, that he'd been treated as. No. He was an adult at work.

What he must bear.

What control does it take to make it through a shift?

We talk about bullying and name calling. But there is another kind of bullying isn't there? The kind where kind words cut down, where soft tones hit hard, were perceptions of 'less than' have motivated a sympathy not needed at all.

Bullied by kindness.

Or what they call kindness.

It's just a matter of perception, I'm guessing he'd call it cruelty.

Sunday, November 18, 2018

... is me: the final post

It comes to an end.

The saga of my chair being stolen, please don't tell me it wasn't, from the door at the airplane is done. For better or worse, it's done. I have letters to write, I have complaints to make, I have compliments to send, but that's simply wrapping it up.

When I got home I spoke to Ruby and Sadie and explained everything that happened to us. They already understood how hard the trip was because we came home to a bouquet of flowers welcoming us safely home. But now armed with the facts, the physical and the emotional ones, I asked them to come up with a way of cleansing the chair from the touch and presence of the woman who had sat in it.

They were all for it.

We held the ceremony last night.

I don't know if it worked.

I haven't sat back in it yet. 

But I do know that we all tried, we all cared, and we all were brought together.

We needed to be.

Because I have been traumatized and, to be honest, I don't know if our little ceremony was for the chair or for me. And what people will never understand is, much of the time, the chair is me.

I am not my chair, but my chair most definitely is me. And it is that me that was there last night, us together, hoping for a bit of a miracle. I want to be alone in my chair.

But we'll see what the morrow brings.

(Thank you for enduring the story of what happened, this is the final post in that series.)

Saturday, November 17, 2018

What Rosa Did: Second To Last Post on My Stolen Chair

The first guy offered me an apology.

He was there to help get me from one place to another and, after finding out what had happened, that my chair had been stolen, he understood why I was so upset. I know he wanted to do something, anything, to help my spirits, or to make a connection. He offered me apology.

I pushed back my anger.

I didn't want his apology. He didn't take my chair. He wasn't responsible for it going missing. I didn't need his apology, and even as I understood that apology was the only thing he could think to do, it only served to add fuel to the fire inside me.

The next guy offered me sympathy.

He, too, wanted to offer me something, to let me know that he understood that something big and traumatic had happened in my life. So he told me how sorry he was that this had happened to me. But, I didn't want sympathy, I wasn't sad. I didn't want sympathy because it didn't fit. It, like apology, added fuel to the furnace heating up my anxiety and pushing calm far from shore.

Then came Rosa.

She strode over to me. She listened hard to what I had to say. She listened to me talk about my present dilemma, and my worries about what happens next, what happens when I get home, what does my immediate future look like. I'd had my legs severed from my hips. I was BLEEDING.

First she offered me empathy.

She let me know that she felt with me. When she leaned down to look in my eyes, I knew she felt what I was feeling. She listened in such a way to give me permission to talk, not just about the chair and the theft but about my fears and anxieties and worries about my whole life. She said things that let me know that she was feeling with me, not for me.

Then she offered me compassion.

She allowed me to feel what I was feeling without question or comment. Her tone remained professional, but kind; she let me know that there was someone, now, involved in this crisis whose job it was to help that actually cared. Cared from the perspective of getting what this meant to me, how big it was.

Then she offered me a little bit of outrage.

This should not have happened to me. It was wrong for someone to take my chair. She was the first, and maybe the only person, who didn't try to give the thief an excuse "They probably thought it was an airport chair." She didn't ask me to understand or care about the person who took my chair. She let it be known that this angered her too. Oh, how I needed to hear that.

Then she offered me a promise.

If there was a way for this chair to be found. She would find it. She would be single-minded in her determination to help me. And I believed her. I believed her because SHE had the fire in her eyes. She took the fire from my heart and lit it in her own. I didn't believe that my chair would be found. But I believed that she would exhaust all avenues in the search for it.

When I finally left the airport, Rosa had brought me down to a place where I could function, I could think, I could talk, I could take action. She gave me back me. Chair or no, I was back in my body. Traumatized, yes. But I was back.

Friday, November 16, 2018

Homecoming: What Happened Next

A knock comes on the door.

It's room service.

I am still sitting in the old wheelchair. I don't want to get used to it. I don't want my body to give in. The room service person is efficient and friendly. It was hard to bear.


Seldom do I lose my appetite. The food looks good but I don't want it. I pick up the phone to call the airport again when there is a sharp rap at the door.

Joe opens the door to find a smiling young man, who seems to understand the importance of what's going on and is glad to be part of the drama. "I have one wheelchair here for you."

The chair looked wounded.

Like it wanted to cry.

Sitting alone in the hallway.

We swapped the old chair for my chair and then, I was sitting in my own chair. 7 hours later we are reunited.

I didn't sleep well that night. Something was bothering me.

The next day I am pushing around, going to my meetings and various events. Something still bothers me. The chair feels different. I get out and we examine it from top to bottom. It seems fine.

Then, as I'm pushing, I realize.

My wheelchair has only been sat in by people I love. Joe. Ruby. Sadie. Marissa. No one else. Not a single other person.

But now, when I sit in it, I can feel a presence.

No. I can. Really.

A presence of someone who did this to me.

I'm not sure how long it will take to go away, if it ever does. But my chair doesn't feel quite like home anymore. It's not quite mine anymore.

But it's here with me now.

Thursday, November 15, 2018

Again, Silence: What Happens Next

The airport wheelchair feels wrong to me. It holds me without supporting me. It has angles I'm not used to. It fulfills a function, that's all. I ask Joe if we could go to the bar. I want to be out of the room, out where there is some noise and distraction, out where there are people just living ordinary lives and not appreciating what that means. People who don't have to be grateful every moment of every day for the mobility they have.

I insist on pushing this clunker of a chair, it's hard, it's heavy and it's not built for speed. The extra weight has me sinking into plush hotel carpet, but I push myself anyways. I will not, in that way, be defeated. We get to the bar and order, tea for me, a draught beer for Joe. The bartender asks about our day. Well she asked so we told her. She was shocked and horrified.

The phone rings three times! It never rings that often at that time of day. Once it was our pharmacy about a pick up. Once it was from a phone company wanting to talk to us about service. Once it was a wrong number. Each time my heart did a flip. Was it information about my chair? Was it information about what was going to happen when we returned home? Was it about a replacement wheelchair to use for now?

When it rings a fourth time I'd become immune but then I notice it's an Arizona number calling. I answer. The woman who was helping me with all of this was on the line. She had news. My chair had been found, abandoned in the rental car center. Without the cushion, and sitting on Velcro, it must have been too uncomfortable for their use so they dumped it. The tag placed by the airline was still on the chair.

"I will talk to your airline and get it back to you asap."

I stumble to thank her.

I try not to cry again.

But I do.

We finished our drinks and rushed back to the room. We didn't want to miss the chair's arrival even though we knew it hadn't left the airport yet.

An hour and a half later, the chair was still not here.

The hotel is about 20 minutes from the airport.

We stare at the phone.

It doesn't ring.


Wednesday, November 14, 2018

Silence: What Happened Next

As is my habit, upon arriving at the airplane door, I spoke to the lead flight attendant. I pointed out that I was using my own chair, that it would go down to the belly of the plane and then be brought  back up for me. I told her that twice before people have attempted to steal my chair and asked her to keep an eye out when the chair comes up. She, as people do, dismissed what I said telling me that no one would do that, I assured her that they would and they have.

Our seats were in row 43 of a 42 row plane. I'm not kidding. We landed and waited for every single other person to get off. When I get to the front my chair is not there. I talk to the people who brought chairs up, I was told that my chair was taking by a woman with long hair and a man travelling with her.


I pointed at the woman who I had spoken to when boarding and told her that I held her responsible. I had informed her, she was at the front the whole time and she simply watched as my chair was taken away. The folks who work in accessible services at the airport bring me a kind of chair that I can't sit in. Finally one is found and I am taken up to the gate area. Several people surround me, I am extremely distraught. My chair is new, I love it, it was my first custom built chair.

People are sent running down to baggage to see if they can find the chair down there. The come back empty handed. I don't know what to do, I'm a long way from home. I don't know how to get to my hotel and what I'm going to do when there. I ask a manager type person if I could use the airport chair for a few days and bring it back. He calls and speaks to a director.

I await her decision.

Sitting at the conveyor belt watching luggage come up I am suddenly overcome and overwhelmed and I break down. I am sobbing in the airport chair. I know people are staring. Joe puts his hand on my shoulder and just lets me grieve for a few minutes until I can put myself back together.

I speak to a manager from the airline, a voice from Winnipeg trying to figure out if I need a new chair to replace the others how she could facilitate that, and then it comes to filling out the forms for both my chair and our luggage which hadn't arrived. Before the forms were filled out, our luggage was returned.

It's been a long time, there is no sign of my chair. Joe goes and gets a rental car, from a company that had lost our prepaid reservation, and arrives after they find a car that I can get into. I have been allowed to take the airport chair with a promise to bring it back when we fly home. It weighs about 35 pounds, versus my stolen chair which weighed 8 pounds.

We get to the hotel, we'd requested an early check in, and are told our room isn't ready. The check in time is 4:00 and we don't get the room until after 5:pm.

After arriving in the room.

We both sit quietly.

No TV.

No Internet.

Just silence.

Tuesday, November 13, 2018

A Hellish Day: Part One

We are safe. But not yet quite sound.

Yesterday morning the alarm didn't go off, my fault, and we were then in a panicked rush to get to the airport. Finally made it through bag drop off, security and then customs. Made it to the plane just in time for boarding. Discovered a mistake on the ticket regarding seating. The attendant who assisted me worked really hard to find us a seat that we could use. She did and we made it onto the plane.

This was a plane we'd not been on before and it was cramped. Really cramped. I sat down in my seat and got ready to leave. A fellow, a good looking guy, came and sat in the seat in front of me. Maybe 10 minutes into a 5 minute flight he flopped his seat way back. Now, I'm in pain and he knew it because I yelped when the seat crushed my knee. He simply wouldn't budge. It was a morning flight, no one else had their seat back except the guy in front of me.

Not only that he would throw his body back against the seat like he was telling me that I had to move my knee. I couldn't. He seemed to intentionally want to physically hurt me. No, I didn't speak to him about this. It's his right to put the seat back, and, frankly, I was really tired from just trying to get to the airport and onto the plane.

I had to get up a couple times to use the toilet and did so by slithering up the back of my chair pulling my body away from his chair. A remarkable feat of engineering I'd say. When I got back I had to speak to him. I asked if he'd put his seat up so I could get into my seat. He looked up and stared at me, I could see he was deciding if he'd do it or not. For a tense 5 minutes I wondered why he was so angry at me, why wouldn't he respond to a civil request. He turned from me raised the seat and I sat down. Then he slammed the seat back as hard as he could and, for a moment, the pain was unbearable.

5 hours I sat in pain.

When we landed I was jubilant, but this would turn out to not even being in the running on my list of things that went wrong that day.

Wednesday, November 07, 2018

On Our Way to Ellen's

When in New York City, we stayed at a hotel in Times Square. We did this for a couple of reasons, one was we love the energy of Times Square and two was that it was only a short walk to go to Ellen's Stardust Diner. We try to go there every time we go there. It's touristy and the line ups are long, but it's a fun place where young people studying voice and acting can work and earn some money while going to classes or auditions. They serve tables but they also get to sing and perform for the customers there. We make an appreciative crowd. So, that was our goal.

Lots of the curb cuts have been renovated from dangerous drops to smooth transitions. It's an uphill push on fairly slanted sidewalks so it's not easy. Further, some of the curb cuts, the further you got from Times Square had not been renovated and were steep and in poor repair. One street corner had no cut curb at all. But we were taking it all in stride and Joe walked with my as I fought to get there under my own power.

Then one of the curbs I was pushing up was really steep. I was making my way up. This is where I find that my right arm is stronger than my left arm and because of that my chair turns slightly. What I do then is just get the right side of the chair up and then use body motion and the left arm to finish the job. However a fellow going the other way, sees me struggle and leans right over me to grab the handle behind me. He is right in my face, and because of the way his body was poised at the moment he had no strength to help. I asked him, my lips very nearly touching his sweater, to let go of me.

It took several asks but he did finally let go, annoyed he hadn't helped an annoyed that I'm annoyed. But we say nothing to each other and he's gone. But now I'm stuck, I have lost momentum and my left arm just isn't going to make it. People are gathering to watch. I let out a grunt and pushed as hard as I could and I popped onto the sidewalk and we went on our way.

We got to the diner and when it was our turn we were taken in, the place was packed. We were directed to a table and as I turned to follow the waitstaff, one of the other staff reached to 'help' me push there. She was cut short, "Did he ask for help?" "No." "Then leave him alone, you don't have consent." The speaker was one of the waitstaff who would be performing later. I don't know where he learned what he learned, but I'm glad he did. I had not seen the 'coming help' but he had and he spoke up.

This post is not about the man who tried to pull me up a curb.

This post is about the man who insisted on my right to consent.

Two different men.

Two very different people.

Monday, November 05, 2018

Anna One

We were in Time Square in New York City just before a street show was about to start. An area had been made clear so that 5 or 6 performers had room to move. And move they did. They did a mix between gymnastics, dance and acrobatics. They had a smooth patter that was fun and engaging. They poked fun at, with probably more dexterity than any physical move they made, racists and racism. They were strategic and they kept us laughing so that we wouldn't realize that we would have to think of them and their words on the way home.

All of the performers were black, were lean, and very, very strong. Their physical prowess as they did some of the moves was literally awe inspiring. One of the fellows that I thought was a support guy was suddenly yanked into the limelight. He was big, much bigger than the others. They acknowledged, as he did, that he tended more to fat than to lean. The group encouraged him to dance and the audience, on cue, started to laugh. He was obviously not a peer of the others. So, he got down and did a couple of somersaults, awkwardly, and the crowd was now laughing with more derisive tone.

Then he returns to where he was when he was shoved back out. The music went up and he danced and moved and owned the space he was in. I was, for a moment, in love with him. He had played the audience. Played to the stereotypes they coddled in their minds. He let them be openly prejudiced and then shut them down, shut them up. It was A.W. E. S. O. M. E.

I love moments like that.

I love people like him.

That right there is civil liberties work.

What they did there is as important as any speech anyone has ever made.

Change begins with challenge. Doesn't matter that it's set to music.