Tuesday, October 30, 2018


Sometimes the most powerful conversations need only a message, not sound, not words, not speech, just a message.

We went to the mall after work today because I'd been so sedentary all day and wanted some physical movement. We arrived, we parked, we went in. As we moved through the mall the bag on the back of my chair slipped off one handle and was dangling from the other. Neither of us noticed because we were deep in conversation about Christmas. We didn't even hear when my notepad of paper fell to the floor behind me.

I was lucky because there was nothing on the pad, no notes, no thoughts, it was empty. I could have easily just lost it and never known what happened to it, but it was picked up by a man with an intellectual disability. He broke away from his staff, ran to get the pad and then picked it up and ran again to catch up with us and give me the pad. When he appeared beside me with the pad, I was momentarily confused. I didn't realize it was my paper and that it had fallen from my bag. He pointed at the back of the chair and instantly both Joe and I knew what happened.

I was thanking him when his staff arrived.

They seemed pretty good because they didn't jump in between us and begin to explain everything. I understood the story just because of the bag, the pad and his retrieval of it. When I finished saying thank you he made a slight bow in return.

He wasn't done. He pointed at my chair and then pointed at himself. I asked tentatively, "are you saying that we both have disabilities?" he smiled.

Then he pointed at himself and me, back and forth three or four more times. Then he raised his arm and made like a bodybuilder showing off a bicep. He did that twice, back and forth between him and me and then the bicep.

The staff were fighting to keep silent, and they won the fight.

They knew this was his conversation not theirs.

Knowing what belongs to you and what doesn't is the most important working skill that direct support professionals need.

I ended the conversation by pointing back and forth with him and then making a muscle.

I wanted to say, "together we are stronger" too.

He smiled, turned to his staff and indicated he wanted to go. They went along with him into the mall itself. I saw the staff a bit later near the food court, now there were two others with them. They must have been somewhere else in the mall and meeting up here.

He saw me, smiled, and made a muscle.



And we are.

Monday, October 29, 2018

And Again

I don't mean to bore you with my take on life with a disability but there are themes that are ever present in our lives. If we were a symphony we'd be 'Bolero' where the same melodic strain repeats itself over and over but faster and louder each time.

So, here we go again.

We go in to the resto/bar one building over from our hotel. We are told that if we were going to be seated at the bar, which had been our request, that we could just seat ourselves. We found a spot, pulled out a chair to make room and I pulled in. Now it was a high bar, but I'm used to that, don't mind it at all.

The bartender rushes over to us and tells us that they have a lowered bar on the other side. He then disappears and we can see him asking people to leave that space so I could have it. I don't want them to be disturbed, I don't want to be the issue. I signal to them and then to him that I'm fine where I am.

He shakes his head and leaves the bar area.

A few seconds later the manager appears beside me to tell me about the lowered bar and tells me that I will be more comfortable there. I tell him that I may be physically more comfortable there but I am not comfortable with moving several people so we can use that section of the bar. He tells me that they won't mind, how he knows this I don't know, and that the lowered bay was installed for disabled guests. I say, essentially, thanks, but no thanks, I do not want to become part of their story about being at the bar and being required to move. I am fine where I am.

Annoyance all round, but we are finally served.

I ask you this: if they installed this for disabled people why, when almost the whole rest of the bar was empty, did they let non-disabled people choose to sit there?

I further ask: Why does this happen all the time? Why does the music just go faster and faster?

We left after one beer for Joe and one tea for me and we left with quizzical looks at our backs from people who wondered why I wasn't compliant to the demand that I sit where I'm told.

Fuck compliance.

Sunday, October 28, 2018

the issue

A few days ago I had to go down to Service Ontario to renew my driver's licence and my health card. When I got there the line up was out the door. I had made time for this and though I was tempted to just come back later, later usually turns into "Oh my gosh, my licence has expired." So I got in line.

Shortly after I took my place a woman comes flying out of the door and headed straight for me. "I've told them that you are here and they are going to come and get you so you don't have to wait."


I told her that I was in the line up and I wasn't going to jump the line. "They don't mind," she said, indicating the staff inside. I said, "Well, they all do!" indicating people in the line up. And, of course, everyone turns and says that they don't mind if I go ahead. Shit. Why does disability turn people into liars? Of course they would mind, people who jump lines are loathed in the moment, it's a natural phenomenon. The first moment cave dwellers put up ropes so the people could line up to see the 'wall art' the distaste for line jumpers was born.

I said again that I would wait my turn. She said, not hearing me, "They will come and get you soon."

Now, I have everyone's attention. I'm a problem. I'm not the cripple they want me to be. I stay in my chair wondering why the hell she thought she needed to intervene.

Then, they do come for me and tell me that I could come next. There are still lots of folks in front of me. I explain that I will stay where I am, wait my turn, I don't want any special treatment, I don't need any extra care. "Your choice," the clerk said, and I said, "Yes, it is."

I'm surrounded by tension.

Again, against my will, I'm the issue.

I want to stop being the issue and just be an individual.

Is that really so much to ask?

Sunday, October 21, 2018

Ableist Privilege Explained

We were going to meet friends for lunch, Joe wanted to pop up to the room to drop off stuff we didn't need. I pulled over and waited, not realizing that I had backed into place beside a luggage cart. As soon as I saw it I fled and parked much further away. I sat there with my heart beating in my chest. Panic.

I noted that beside the luggage cart was a popular place for the non-disabled to wait for each other. Three or four people did so in the time I waited for Joe. I knew that with the conference in the hotel the elevators caused a bit of a wait time. So I watched them stand there, no anxiety. No fear.


I have been mistaken for luggage.

I have been treated like luggage.

I have been transformed into a thing to be moved.

I know what it's like to assume my humanity when others do not.

I have had my chair grabbed and shoved, against my will.

I have been made to move to get out of the way when I was already out of the way.

I have been referred to as a tripping hazard by overzealous security guards.


I am not luggage.

Here's the thing. Ableist privilege is being able to stand by a luggage cart with the surety that passers by can see the difference.

The. Difference.

Saturday, October 20, 2018

Alien. Human

Okay, at this conference I presented on Disability Informed Treatment (Support) which asks service providers or clinicians to firstly acknowledge disability in a real way and then to see the disabled person in context of the system that supports them, the society that rejects them, and the power dynamic you are in with them. It's a big ask, made particularly difficult by so many peoples' reluctance to acknowledge disability as a real, lived, phenomenon. We are not 'just like every one else." We are different and we live in a different physical and social reality. But I'm getting off track here. Disability makes a difference in many ways is what it all boils down to. I thought that this was a difficult concept because it upsets as many people as it enlightens. 

Then this happened.

I wanted some exercise, real exercise, and as it was a beautiful day, headed out to go for a push over to the Pacific Centre Mall and then do a tour of the mall. It's not far away but I have to push up a steep incline and then make it, as it turns out, along a very difficult few blocks. Every single curb cut is bad. Twice I had to take the feet off my chair, get down, put them back on and then make it across in the remaining 3 seconds. Once across I have to make it up curb cuts that are very steep and which catch either my foot pedals or my anti tip thingies on the back. It's a journey.

We make it.

Once in the mall we wander around and then decide to stop for tea. We want to go back to a place that we saw but couldn't remember how we got to it. We stopped and asked a young man at the information desk in the mall. He quickly gave us directions and we were on our way. Nearly there I stopped and said to Joe, we should have asked him a different question. I wondered if there were an underground passageway that would go towards the hotel and bring us up further along. Could we remove some of our outside journey and reduce travel on those curb cuts?

We went back to him. We joked with him about returning so quickly and then asked the question. He told us that what we had envisioned didn't exist we were as far as the underground would take us. We had mentioned the curb cuts and he acknowledged that they weren't great on Georgia Street. He then offered the first of two solutions. He suggested taking the Skytrain over one stop. After he gave us directions I asked him how big the gap was onto the train because my chair has very small front tires. He didn't know and saw that that could be a problem.

"Give me a minute," he said, and then paused and thought.

Then after thinking about travel in a wheelchair, curb cuts and the need to have a decent surface to roll on he said, "If you go down to the end of the mall, you can take the elevator up and be on Robson street. There is a lot more pedestrian traffic on Robson and the city does much more upkeep on that stretch of road so I'm guessing the curb cuts will be in better shape and the sidewalks easier to move on. Then you just have to turn on your street to go down to the hotel."

I stared at him.

We both did.

This might have been the very best advice I've ever gotten from someone in an information giving capacity in a city anywhere. He thought through a potential solution. He looked at my request from the point of view of travel in a wheelchair. He bothered to think about it. My question mattered to him. He gave it attention. Even if it turned out not to be helpful, it was amazing for someone to give disability informed advice.

So, we did what he suggested, we hit Robson. Didn't have a problem with a single curb cut. The sidewalks were in good repair. We made it back to our street in minutes. I kept on going along Robson, Joe called out that I was going the wrong way. I kept going, I didn't answer because I was a bit breathless, he caught up to me and I explained. "I always have to push indoors because outdoors is so inaccessible, I'm going to keep going for a bit just for the joy of it." So we kept going.

When we were both a little tired, we turned around and headed back and got to the hotel with no problems.

Because someone bothered to think about my question. Because someone valued me as a person worthy of giving some thought to. Because someone actually gave a damn about their job as an information giver. Because it wasn't difficult for him to see that my perspective was different but not alien. Human.

I'm going to contact the Pacific Centre Mall and send them this blog. 

This happened on October 19th, between 3 and 4. He was on shift alone but was then joined by a co-worker.

Please thank him for me will you.

Friday, October 19, 2018

Why I Called Them Bigots

The conference I am at is spread over two hotels with sessions happening in each. The morning session I had chosen yesterday, the one following the keynote, was in the other hotel. To get there I had to go out and push up a fairly steep hill for a fairly long way. I made it on my own, with Joe protecting me from the inflictors of help, as I used all my strength to get me to the top. We crossed the street and now faced a problem.

Where the hell was the accessible entrance? We could see where the stairs were, but we could see no hint of a ramp. We ping ponged around and finally discovered where the accessible entrance was. It was out of view, there were no signs indicating that there was even the possibility of entry. 

I'm angry.

I'm late for the session, I wanted to get there early and be in the room so I could make a place for the chair because hotels, universally simply don't set up rooms with the idea that a disabled person might come in. But, no, I'm late and the session is started.

I went to the desk and asked if I could speak to the front desk manager immediately. He came out and I let loose. I told him of what we faced when we came to the hotel and looked for the invisible access entry. He immediately nodded and agreed there should be signage. 

"This is not news, it's obvious that this signage should be there, but it's not, tell me why?" He stared at me, lost. "I'll tell you why. It's not there because you don't consider the needs of disabled guests as equivalent to those of your non-disabled guests. You see us as lesser people. You provide several entrances for the non-disabled and one, hidden away one, for those of us with disabilities. You know what it's called when people see others as lesser? It's called bigotry. Plain and simple bigotry. You already agreed, instantly that signage should be there, you weren't surprised by my pointing this out. BUT IT'S NOT THERE. Now I have to go late to a session I wanted to be in and I've had to find my way in here, and I've had to speak to you because that's my moral responsibility as a disabled person. Just to remind you, I know that I've told you and I know nothing will happen. Because bigots don't care about feedback from disabled people."

And I went to the session.

On fantasies.

And while there had one, but it wasn't about sex, it was about simply being able to go about my day with full access to the world in which I live. What a sad and pathetic fantasy. What 'they' get every day falls into the category of fantasy for me.

Thursday, October 18, 2018

Mary's on Davie

Joe and I had to do laundry when we arrived off the boat in Vancouver. We found one that was near a gay bookstore, so Joe went to do laundry and I went to browse around the store. The book area of the store has fairly narrow aisles but I was, if careful, able to make it around to most of that part of the store. I can, and did spend a lot of time looking at books. By the time I made my purchases, Joe had finished the laundry. I was pleased to be of assistance, for keeping myself entertained while he does this chore is, ultimately the gift he wants for that moment.

We decided to stroll down the street a bit and grab a bite to eat. We found a small diner with a flat entrance and headed in. I love diners but a shocking number of such places are simply inaccessible. This one wasn't. We took the first table after coming through the doors because there was the perfect place to park the chair. The waiter, who was tasked with seating us simply let me tell him what I needed and made it happen.

Throughout the meal we were served with humour and a side of welcome. At no point did I feel that the waiter was serving me in any way differently than anyone else. He even looked to me, not Joe, to place my order. The food was good, the atmosphere was better, the service was exceptional - exceptional being simply equivalent to any other customer. I didn't feel 'included' because that implies that the staff there did something intentional, exceptional, to make inclusion happen. We've come to see inclusion as something that someone does to someone else. It isn't, inclusion happens when no one does anything and welcome still happens.

We liked the experience so much that we went back the next day with Joe's cousins and are going back to day to meet friends for lunch. I will not be the only wheelchair user at the table today. I'm curious to see if my friends notice that welcome without stretching a generosity muscle is part of the charm of this place.

We will see.

Saturday, October 13, 2018


Something kind of wonderful happened on the flight over from Toronto to Vancouver. I've been a wheelchair user for a little over 12 years. While I didn't lose as much as I feared I'd lose, I did gain more than I expected. They never talk to you about that part. I feared I'd lose my ability to fly and to lecture and to make my away about the world. I haven't. I've learned to adapt, do things differently and deal with worries specific to disabled people.

One of the things in the loss column was sitting by the window. I had always preferred a window seat to an aisle seat but my disability forbade it. I simply didn't have the ability to make my way down between the rows of seats and get into that seat. Couldn't do it. So, I adapted, I sat on the aisle. I was good with it, but even all this time later, it was in the loss column.

Yestereday we ended up in the bulkhead seats. This was an accident, we never buy these seats because they are made narrow by having no arms that lift up. There is plenty of room to walk in front of the seats because there isn't a row right in front. We were about to speak to someone when I said to Joe, I'm going to try it. I sat down in the window seat. It was tight, tighter than what could ever be called comfort. But that's all it was. Tight. I did a few exercises with my feet to see if circulation was cut off, didn't seem to be. Joe took his seat.

I remember a time when I simply could not have fit, where it would not have been tight, it would have been impossible.


I was sitting by the window after all these years.

After a half hour of sitting in the seat my body settled in distributing itself into available space. It got more comfortable.

So, I watched us take off. I took bad pictures out of the window. I watched us land.

For now, sitting in the window is still in the loss column but it's also in the maybe one day column. A small but might shift.

Thursday, October 11, 2018

International Coming Out Day

Today is International Coming Out day, which is a day designated to celebrate people within the LGBTQ2S community who have self identified as members of that community. Today Facebook made it an option for those of us who have done so to mark it as a life event.



Coming out isn't a singular moment. That is unless you consider the moment one comes out to one's self - the first and most important coming out is entirely silent within but always accompanied by tears or relief or fear or a myriad of other emotions appropriate to the situation you live in.

In this context, Coming Out day is about the day you revealed yourself to the world. I'm sorry, that moment doesn't exist. I don't know a single person within my community for whom Coming Out was a moment or even a day, it was a process. For me I came out when I was 16 to some and then didn't finish until, um, geez, I'm not done.

Because of the assumption of heterosexuality, I have to tell people on a routine and regular basis. I have to be ready every time for the reaction I get. It's never particularly easy. It's a moment of revealing a part of myself that other's often feel they have the right to approve or disapprove. I hate those who respond with approval only slightly less than those who respond with disapproval. It's information, a fact. Facts don't require the gift of approval, they just are.

So, I support anything that raises the profile of my community, and I celebrate those who have come out to themselves and to those in their world. I celebrate the courage it took.

And I celebrate the courage it will take for each of us to keep coming out over and over and over again.

Wednesday, October 10, 2018

Porn Star Dave

The one day, during my time off sick, that I felt strong enough, and motivated enough, to go to the gym was a Saturday. The girls were spending the weekend with us and love to go swimming on Saturday morning and, at their insistence over time, it became a ritual, it's just what we do. So that explains the motivation to go. We arrived and they signed in to swim and I signed in to exercise.

I had finished with the wheelchair adapted machines and then headed over to the cable machine to begin my personalized circuit of exercises. I was working hard, concentrating hard, and constantly keeping my mind on how well my body was feeling. I had been quite sick after all.

I was interrupted by a woman maybe 20 years younger than me. She smiled and introduced herself. I was a bit flustered because this just isn't done. When people are working out, working hard, you don't push into that without a really good reason. But, I'm disabled, people interrupt the flow of my life all the time. I live my life with described audio. So, I stopped and asked her how I could help her.

She asked me if it would be okay for her to take a picture of me. She saw me recoil from her request and then, as they do, started talking quickly. She told me she had a friend who was supposed to show up to work out at the gym and she wanted to take my picture and text it to her with the words, "If he can make it to the gym, surely you can."

Inspiration porn star, that's me.

I was so flabbergasted at the whole interaction that I was left literally speechless. I just said, "Get away from me," over and over again. She talked faster, not in apology but in an attempt to get the freaking picture. She eventually stopped. She went back to her workout pouting.

Now I don't feel safe. I cut out all of the exercises that have my back turned to the gym and only complete those where I can keep an eye out.

I do not want to become a meme.

I do not want to be splashed onto her social media.

I'm sure someone famous said this, "I want to be alone."

It's not a big ask.

Tuesday, October 09, 2018


I am going back to work today.

As you know I've been quite ill and as a result had very low energy for almost 10 days. Getting up this morning was really difficult because I'd had a poor sleep. I went to bed with the feeling of being a child about to go back to school in September. I was excited.

I'm very fortunate that I'm able to keep doing what I love doing. I love the sense of purpose that I get from working with people with disabilities, my team in clinical services and Vita the agency I work for. There is something powerful in having a day full of meaning. Yes there are frustrations and disagreements, but those are usually founded on two people who care clashing over how we can best support one. Clashes aren't to be sought out, but they aren't to be feared either. If the outcome is better service, how can that be wrong?

It will be a long drive down, first day after a long weekend, but I'm even looking forward to that! Just being back in the routine. Listening to the news on CBC, listening to classical music to calm us down after listening to the news on CBC, that's our tradition. But mostly it's the feeling of being, forgive me for my age, back in the groove. Back to real life.

I'm still a bit weak. I'm still a bit tired. But I am healed. So, no more days focused on getting better, the focus now goes to being better. That's sometimes a harder transition than I'd like to admit.

Monday, October 08, 2018


Ruby and Sadie both needed new housecoats. This meant that we got to go shopping and we headed over to the mall. After dining at the food court, we headed on our quest. The first two stores didn't have robes, the third one did. They each picked the one in their size and they put them on. As I sat in my chair looking at them I couldn't really see if they were a good fit or not. I thought both of them looked a bit too small.

They had flung on the robes over their street clothes and while Sadie was still picking hers out, I looked at Ruby wearing her choice.She was struggling to get it to hang right, I called her to me and said, "I'd like to see if this fits properly, do I have your permission to pull the coat from behind you so it wraps all the way around." She nodded. I did and it fit. Next up was Sadie and she had the same problem with the robe not naturally falling over her street clothes. I called her to me and asked her the same question, I wanted her permission to just pull the robe further around. She agreed. In this case, Sadie's was too small so she got a larger size.

I hadn't noticed that the sales clerk was standing off to the side.

She was crying.

I hate to say this, but I think I know why.



Don't assume you have it.




It isn't hard.

Sunday, October 07, 2018


A couple of days ago, I put a message on Facebook: At 13 I thought I'd never be loved. I was wrong. I give thanks for not doing what I considered. People have been very kind in their reaction to this post, many telling me that I matter. The adult me understands this. The adult me understands that everyone matters. But the 13 year old that I was didn't feel part of 'everyone' he felt only that he was the 'only one.' Alone in my thoughts. Alone in my body. Alone in my heart.

At 13, for the first time, I had a crust on a boy in my class. This came as a shock to me. I had always felt that I was different in some undefinable way, but the unknown became known. I liked boys the way boys were supposed to like girls. Flooded with shame I took the secret and buried it deep. It made me an awkward child and socially inept. I was odd. It's hard to pretend to be normal. It's hard to pretend to be typical. It's hard to pretend to be a boy who likes girls. I lived a life of artifice.


of course,

I hated myself.


of  course,

I could see no future.


of course,

I wanted the pain to stop.

I have no desire to talk about what I did then. Because it hurts to much. Even the memories from those times are ones of horror. Maybe 15 years after graduating I drove to the school where I lived in fear every day. I had not seen it since leaving town. Fear of discovery. Fear of hurt. I had endured that school. But when I saw it from the distance of years I was shocked at how small it was. The building stood looking innocent of the things that occurred within.

It was that moment that I began giving thanks.


of course,

this was new to me.


of course,

I began to cry.


of course,

I knew I had survived.

Shame lies to us. It tells us that we are not worthy. It tells us that we are unnecessary. It hands us a means and show us a way to simply stop being different, being outcast, being at all. Shame needs to be silenced.

For those of you, this Thanksgiving,  who give thanks for the breath you take, for the lives you live, for the love you feel. I join you.

For those of you, this Thanksgiving, who give thanks for what you own, inside, rather than what you own, outside. I join you.

For those of you, this Thanksgiving, who give thanks for having the joy of making your way down the road to becoming. I join you.

I will dine with those I love.

That's the miracle.

That I thought would never come.

Saturday, October 06, 2018

The Soft, Deadly, Hands of Dr. Google

So on Thursday I had to go for blood tests. It's been a week of feeling weak. My primary contact has been with my primary health care team. So, oddly, going to get blood drawn was a wee bit of an outing. Rah!

When I was done, I was given a way that I could sign up to get the results on-line and was told they'd be up fairly quickly. They were. I had my blood drawn at 8:30 and the results were back in by 2:00. When I log in I see the tab for clicking on and viewing my blood work results. Alarmingly there is a big pictogram indicating that there was something wrong, or at least noteworthy, in the results.

My heart beating quicker than usual, I opened the tests. A few things were noted at the top. They were things that were a little low, but in reading the numbers I wasn't really concerned because they were just a wee tiny bit low. But then later on in the results, I see that something is higher than it should be, and to me, it looked like a goodly bit higher.

I don't know a lot of the words that were on the results but that didn't matter, I copied the name of the test and the reading that I got and pasted it into Dr. Google. Well, seconds later I wished I hadn't. Dr. Google basically placed a gentle, and surprisingly soft, hand on my arm and told me that I was going to die and that I would have a life of misery while waiting to do so.

I showed Joe what I had found and then started reading to see if there was anything I could do with diet or exercise or if there were prayers I could utter to slow my slow decline towards death. I spent hours. I had drawn up a list of foods that I could have and foods that I couldn't have. I was learning words that I'd never heard of before but I was good with that. I was in full research mode.

Then, my doctor called. His tone sounded casual but professional and he asked me about my infections? I'm thinking "Why are we talking about my infections, which are pretty much gone now, when he must have seen that my blood work had a little symbol, a picture of alarm, on it." So after we discussed that he started talking about my blood test which he said 'looked good.'

He spoke of the lows, I was right, just a wee bit low that should be watched but not really a concern. Then as he was preparing to go, I asked him about the test indicating hi. As he was looking at it on his screen, I could hear him scrolling, I was telling him about my research and my determination to try to alter my diet and what I'd found in my consultation with Dr. Google.

He told me that the number wasn't a concern. To give me an understanding he told me what number would be a concern, it was over 100, I was barely over 5. He then pointed out that the test could be quite variable and went over with my results from my last tests, none of which I'd seen on-line, and yes it had gone up and down and my number was lower than some and higher than others, but no where near the worrisome figures he'd mentioned.

I felt thoroughly calmed down. I thanked my doctor and wished  him a Happy Thanksgiving. We were done and I was fine. I wanted, however, to slap Dr. Google silly, but there is no way to really do that. Getting the results are cool, reading and understanding them is quite a different matter.

My doctor a long time ago bemoaned the use of Dr. Google, and I felt that he had adequately warned us about the dangers of internet physicians. But, guess not. Next time, I'm not sure what I'll do. Will I read the test? Probably. Will I wait for the doctor, the one who spent all those years in medical school, to interpret them? I really, really, hope so.

Friday, October 05, 2018


I am nearly 66 years old. Just months away from it. And yet I'm still a mixed up mess of insecurity and self-doubt. I'm not 16 any more. I'm not in high school. I'm way more than an adult, I'm living the post-adult life. I haven't grown out of some of the rages of adolescence that I was waiting so willingly to pass by.


Run into someone I haven't seen in some time. They make a quick joke. I make a joke back. My remark, meant to be funny, landed like a thud and made me look like someone whose social skills had died a slow and painful death by embarrassment.


I obsessed about it. Wondering if I should write a note saying, 'oops, sorry' not funny. But then thinking that they may not be feeling that way about it. But then thinking they may be. Then thinking what an ass I am. Then thinking, but were were in joking mode. Then thinking that I always take things too far. Then thinking that taking things too far is what got me as far as I've gotten in my work. Then thinking that I shouldn't be thinking about this so much. Then thinking that I needed to think about it until I got a sense of clarity about what happens next.

It's exhausting.

But not as exhausting as the sinking feeling in my stomach that I'd just made a big social mistake. Then pushing that feeling aside with the realization that it was just a moment, just a remark. Then letting my stomach fall farther from the propped up stilts I'd put to keep my stomach from dropping through my shoes.

It's humiliating.

I'm an adult. I'm post-adult. I'm further from being 16 than I am from death. Shouldn't I be past all this stuff. Why is it that I've never really grown up. Why do I worry so freaking much? Why do I let my insecurities and self doubt such a free range? Why won't they answer when I call them back. Why are they always barking at the base of my self worth?

I got home.

Needed a nap.

Took one.

Old people can do that at least..

Thursday, October 04, 2018

The Push

Yesterday I felt well enough to get out and do something. So, I went grocery shopping with Joe. When we got to the store all the disabled parking spots were taken. I pointed towards a spot a long way from the store but it was a place where we could park and no one could park beside my passenger door. I told Joe that I was really feeling the need for some exercise and pushing there and back would be a start on getting back into the routine of using my body, not just caring for it.

We parked and I got into my chair and zipped off to the store. As I anticipated, I enjoyed the push, enjoyed the crispness in the air, and the feeling of my arms and shoulders working. It took Joe a second to catch up with me, my chair is fast, and we began shopping together. We are not overly demonstrative, or demonstrative at all, in public. We leave that to the young, we came to adulthood in a different era. But I have noticed that people notice our relationship because of how we are with each other, how we talk about what we are buying and what we are planning for supper and that kind of ordinary couple kind of talk. That gets noticed. A lot. I don't care.

But that's not what this is about.

Sometimes Joe and I separate to do separate things, like yesterday. Joe went through the till and I went to the ticket checker to see if we'd won millions on our lottery tickets. We didn't. While I was checking the tickets a woman, my age, approached me and said that she'd noticed we'd parked far away and not in the disabled spots. I told her that they were full. She said that there were a lot of spots closer and I told her that I'd wanted a bit of exercise. I found myself once again in a discussion about life as a disabled person. She really had no cause to ask me questions about where we parked and why and I had no obligation to answer, but I get caught, I don't always notice when boundaries are being crossed.

But that's not what this is about.

So I told her that I wanted the exercise and that's why we parked there. I can still see her putting her forefinger against her lips to indicate that she was thinking and then she said, "I've often thought that disabled parking just makes them lazy, you know, disabled people."

She 'often thought' ... 'often thought' ... she thinks about disabled people and our parking. Why on earth would that be something she was concerned about? Why did she think her opinion about it mattered? Why would she waste any of the time she has on earth thinking about disabled parking?

She approached me because she had noticed where I parked. Why would she look at me and think about parking? Why is my life under scrutiny and set up for the opinions of others? Why would she think that my reasons for parking there were anything more than my reasons?

"Makes them lazy" ... who is 'them' am 'I' 'them'? Aren't disabled people a widely divergent group of people with different lives and different goals and different ways of being disabled? Lazy? Lazy? What on earth? I push my chair with the small muscles of the arms and you walk around using the large muscles of the legs, you're lazy! My ability to push myself has nothing to do with another person's need for parking closely. I usually park in the disabled spots, but today I was good with parking far away. I'm not always up for that push. Disabled people get called 'lazy' all the time by people who have no sense of the high cost of disability, financially, socially and physically.

She walked away with her ears full of about 3 minutes of disability awareness. The startle on her face when she discovered that I was not complimented by her statement, being one of the un-lazy ones, but offended by her classification of disabled people and her assumption that we are all exactly the same was priceless.

I can feel the yesterdays push in my shoulders this morning and its a good feeling. It feels like health. It feels like life is calling me back to business. My own disabled life, different from every other disabled life, if I learned anything from that encounter it was to always recognize that I write only of my experience, and hope people relate, I speak only of my experience, and hope people understand, though each of us is seen as 'the voice' none of us are. We are we but we are also not we. Does that make sense?

Wednesday, October 03, 2018


I've been wrong about something.

Very wrong.

Both Joe and I have often said something like, "What does it cost someone to just be nice?" or "It doesn't take anything to simply be kind." There are other versions of the same idea - kindness only takes the thought, the inspiration and the moment. We thought, the both of us, that anger and meanness and hurtfulness took work, energy, burned calories.


At least for me.

I've been quite sick the last several days, I'm healing faster that the doctors expected but not fast enough for me. I've not been able to 'count my blessings' because the idea nauseates me right now. I don't feel like giving thanks for the fact that I'm getting better and that something that could have been very serious has been avoided by early detection and swift action. No, my heart is not full of warmth.

In fact, I've found it very difficult to 'be nice' and 'be kind' to people. I find that my tongue is desperate to spit out mean words to people who even just vaguely annoy me. I find that my feelings are hurt more easily and my impulse to lash out is strong. I find that, without the energy that comes with good health - kindness and generosity - and good will takes a lot of work.

And anger doesn't.

Anger's easy.

I need to say that I'm not giving in to the impulse to be mean or nasty or spiteful or hurtful, except when I slip occasionally at home (Joe gets it but doesn't like it). But not giving in to the easy impulse, the one to lash out, takes work. Further, with one hand I have to hold back the impulse to anger and force the other hand out in greeting and welcome. It's hard work.

Really hard.

Kindness isn't a virtue because of the good it does. Kindness is a virtue because of the good it takes. Pushing past the justifications waiting to excuse myself for my actions to taking action to simple be decent isn't always easy. In fact, I've found that for me, it never is.

So I've learned something while off sick.

I've learned that nice people aren't just naturally nice, they are nice by decision. And kindness isn't a character trait it's a series of decisions, big wins over pettiness, that someone has to active make.

I saw a woman the other day, stop, kneel down, and chat with a fellow holding out a Tim Horton's cup to collect change from passers by, he was smiling at her and she was laughing about something. Money went into the cup, he said thank you and she wished him well. That's a whole lot of decisions that she had to make, that cost her time, and energy, and money, and she had to endure the glares of others who disapproved of her actions.

What she did came from the heart, but it also came from the mind, and the body and the sheer will to be decent. That takes energy.

I hope as I get better I remember all this, because I want to have the energy it takes to be who I want to be, not who, I've learned, I very obviously am.