Saturday, July 30, 2016

The Door Arm-y

I'm not sure what it is about the bump that makes it one that is really difficult for me to negotiate. To be sure, I get over these kinds of things in other places, in other doors. But the one here, in the entrance to my own apartment building, it's just brutal. I've been lifting weights since February 1st, I can push myself uphill, I can get myself up and over the small bumps that accompany almost every curb, but the threshold of that front door simply doesn't want to let me in.

I've developed the only technique that works, because that's what people with disabilities do, we encounter barriers and figure out how to manage them. That technique is to hold the handrails on both of the front doors, tilt my chair to a 45 degree angle, then act all Olympic bobsled rider at the top of the run. Back and forth a couple of time then a huge push through, the chair careens towards the threshold and pops over. Works almost every time, when it doesn't I almost throw myself out of the chair. Because of that Joe watches me do this with a mixture of humour and horror. Humour because he finds everything funny, horror at the idea of getting me off the floor and back into the chair.

We manage, that's the message here. But we manage when I do this the way I need to do this. I've written before about the problem I have when people want to hold the door for me and the difficulty I have in getting the door back so I can use it. When they hold the door open, I quite literally, can't get in. For the most part people in the building have learned to listen to me when I request something, rarely, or ask them, politely, to not help.

But couple days ago I found myself in the middle of a kindness fight between two men and one woman all determine to hold the door open for me. One fellow came out, saw me rushed to get the door, before I could stop him another guy came by saying to the first guy, 'I've got it.' The both held on a second later a young woman was coming in and reached from behind and said to the two guys, 'you guys go ahead, I'm on my way in.' For a second they all just held the door in silence. A kindness competition was going on, and me, sitting under all these arms.

In that silence I found opportunity, 'I need the door so I can use the handrail to get in.' A choir, 'No, it's OK.' I looked to Joe who also saw the absurdity of the situation and had started laughing. They glanced at him, and though his laughter he explained how I got through the door, unable to speak most words he mimed them while ha ha ha-ing through the explanation. I looked up at them they looked down at me. Then we all just laughed. They let go of the door, I grabbed the bar, I already had the other one in my hand and I pushed back and forth a couple times and then shot into the lobby to their applause.

The oddest entry into my building I've had yet.

Life in a wheelchair - expect the unexpected.

Life in a wheelchair - develop a sense of humour.

Life in a wheelchair - there are moments when taking a bow is appropriate. 

Friday, July 29, 2016

The Situation Ain't Me

"I'd curious, do you blame God, or genetics or your own poor health habits for your present situation?"

I was reading an article on the stabbings of disabled people in Japan, an act of domestic terrorism, and a hate crime targeting those of us with disabilities. The article was written by a person with a disability, you could tell that simply because the terms 'hate crime' and 'domestic terrorism' were used. I still have not seen those terms used in mainstream media written by a non-disabled person. I DID see an article in the Japan times using the term 'mercy killings.' So there we have the great divide, those of us in the disability community and those who simply see us, to greater and lesser degrees, as burdens of one kind or another.

I read comments here on my blog and on my Facebook page with great interest and curiosity, I like seeing how this community of readers and those with whom we have agreed to call ourselves 'friends' on Facebook react. In both places, there are wonderful people who discuss, disagree and sometimes debate issues and topics that I raise. But, reading comments in other forums is a very different thing.

For example, I posted a video of one of the mother's who's son died in the Orlando massacre at the Pulse nightclub as she spoke at the Democratic National Convention. I went to the comments and was shocked at the hate and the vitriol aimed at her. People even claimed that the massacre never actually happened but was staged by the anti-gun people. Mostly the called her the 'B' word, mostly they accused her of simply being a bad actress paid for the performance. Mostly they assaulted her in any way, using any argument they could. I get very cold when I read these kinds of remarks.

The same was true when I read the remarks of a disabled writer writing about a disabled issue and bringing in a disability lens. I was shocked. The attack on the writer was astonishing. Oddly they'd attack him, verbally victimize him and then challenge him on playing the victim card. Wow. But one of the comments that struck me was the one I opened with.

"I'd curious, do you blame God, or genetics or your own poor health habits for your present situation?"


 The reader simply didn't get the situation. The situation, as in the case of the murders in Japan, which was the topic discussed, isn't disability. The situation is the atmosphere of prejudice, ableism and disphobia in which people live. The situation is the lack of access not only to buildings, to justice and to simple respect, not the disability at all. The 'situation' that transgender people find themselves in, when confronted by a gang of bigots with weapons on a street, isn't the fact that the person is transgendered, it's the fact that there are people with weapons on the street.

The present situation is something that we as disabled people experience is something that I'd dearly like to discuss. But how can that conversation be had with people who think that we, ourselves, are the situation? How can we speak with people who filter our words through pity and hatred? How can we be heard above the white noise that our difference and our disability create in the minds of those who believe that the noise is cause by our discordant lives rather than their disgust at our bodies?




Health Habits?

No, buddy, you ... you are the situation.

Thursday, July 28, 2016

Running Out To Do A Chore: Dialogue

Really, I'm fine.

No, I don't need someone to be with me.

No, you don't need to call anyone.

Please, could you move out of the way of my wheelchair?

Seriously, I an fully independent.

OK, yes I need help with some things, but not with being out on my own.

I'd like you to move so I can get by you.

Really, you don't need to call the police.

No, I don't have a minder.

Really, I don't need a minder.

I don't have a staff at home, I have a husband there.

Yes, I'm allowed to be gay.

No, he doesn't have to be with me when I go out.

Please get out of the way of my wheelchair.

I'm not answering that question.

If you don't move, I'm going to call the police.

There's a security guard, 'over here, over here.'

This woman has me trapped here and won't let me move because she thinks I need a minder.

No, I don't need a staff.

Yes, I have ID but why do I have to show you ID? I just need your help to get out of here.

No, I don't have a certificate that says I'm allowed to be out on my own.

I'm done, I'm calling the police, and you sir are in real trouble. Your job is to help me from a woman who has clearly trapped me, a wheelchair user, in a corner and is blocking my free access.


(Everyone leaves)

I go on, alone without assistance.


Wednesday, July 27, 2016

That's What Matters

"That's where I had my accident," she said, pointing to a bus stop, " I got off the bus, took a couple steps and fell straight back." We, the driver and I, were a little surprised to hear her voice as she had sat quietly while he and I gabbed about disability politics and ableism - he's really into all that stuff. We then listened to her tell her story of the day she became disabled.

She didn't know that what happened would lead to her using a power wheelchair right off. It took a couple of weeks before the damage that had happened during the fall to become fully evident. She spoke of having to adapt her apartment, make sure that she could shower and do all the bathroom stuff that people do, get used to a new way of getting around. Learning the ropes of navigating the world in a wheelchair.

Clearly she had been listening to our conversation because she started talking about her experiences with prejudice as a woman, as a visible minority, and as a wheelchair user. About how people treated her when trying to access the subway, how they yelled at her and cussed her out using her gender, her race and her disability equally in their verbal attack on her.

Then quietly, she spoke of how she resisted pressures to give up her home, to move in with relatives, to be taken care of ... she would not be anyone other than who she was. Some would see her and see fragility and they would be wrong. She had a will of iron and a determination to live her life on her own terms. That's who she was before, that's who she was now.

It's odd, she reflected, to be able to point exactly at a place and exactly state a time when life changed, but she said, "my life changed, I didn't. That's what matters.

And it is, isn't it?

Tuesday, July 26, 2016

Japan, Hate and 12 Days

Purposely planned.

Specifically targeted.

Openly avowed.

The hate killing of disabled people in Japan is a chilling story. Let's go over a few facts, all of which are reported in the Guardian in clear detail.

1) the man turned himself in stating that 'it's better that disabled people disappear.'

2) he wrote a letter to a politician wherein he outlined the need to kill disabled people, the Guardian reported that:  "In the letter, Uematsu argued that the government should permit euthanasia for disabled people, said he would be willing to carry out such killings himself, and detailed how he would do it."

3) a direct quote from the letter:  “I envision a world where a person with multiple disabilities can be euthanized, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities.”

4) he planned to kill 470 disabled people, though he also said he'd turn himself in after killing 260 disabled individuals.

5) all this was known when he was hospitalized, involuntarily.

6) a man with clearly stated goals of mass murdering people with disabilities, a man who had planned it out, who made it abundantly evident that he had a desire to eradicate disabilities from society, spent 12 days in hospital before being released. (12 days! Less than 2 weeks. I guess mass murder of people with disabilities, clearly stated and planned, isn't that much of a mental health concern. 12 days!)

The discussion of and public endorsement of the concept of mercy killing of people with disabilities had taken root in this man with alarming ferocity. No doubt he will be spoken of as someone who has mental health issues, and maybe he does, but when you read what he says, what he says isn't far from what most people have come to believe. His statement to the police upon turning himself in that 'it's better that disabled people disappear' isn't a deranged rant by someone out of control, it's a calm statement of fact that echos the sentiment of many in society. People with disabilities know this sentiment, we hear it, we experience it and we have come to fear what it will do. Our lives are devalued, are needs seen as special and therefore burdensome, our rights are declared to be gifts rather than guarantees.

But there's more.

A specific, targeted attack aimed at eradicating a group - a mass murder of a group of people because of who they are, and no where does anyone speak of hate. No mention of this as a hate crime against people with disabilities. No. Where. I have not read every paper of course, but in my searches on the Internet the only time that 'hate crime' has been used to describe this event it's by a disabled writer on a disability blog or on a Facebook post.

Why isn't it a hate crime?

I think the answer goes deeper than 'they don't get it.' I think it's because, maybe a little, people see the logic of what he's done.

And that scares the hell out of me. 

Monday, July 25, 2016


The line up for the light was long, we knew it would change over several times before we could make our turn. There was a man, hat out, walking the line of cars, asking for money. I had no change at all and was out of Tims cards, which I usually give out to people who ask for cash, as I made a mental list to pick up some more, Joe was digging in his pockets to find what change he had. When the fellow arrived at our car, Joe said, "This is all the change I've got, sorry it isn't more."He took the change and said, "Listen, man, you don't owe me anything, I'm grateful for anything you give."

Joe laughed, as he does, and wished the man a good day. He didn't leave. He smiled and said, pointing to the line up of cars behind us. "These people in these cars, they don't owe me anything either,' then he paused, 'but you know what I wish they understood?" He paused again, "I wish they understood that anyone of them could end up where I am today, I wish they understood that even if they don't want to give me money, they could still give me respect. I hate it when people act as if I'm not there, or as if just looking at me would make them dirty, if they don't want to give me money, say no, I'm good with that. Just don't make it like I don't exist."

I spoke next, "I use a wheelchair and it's the same, people either stare at me or they pretend I don't exist. It's one of the other. I get just wanting respect. I really do."

He thanked us again, "For the change and for a moment's break from being just a beggar.'

I understood what he meant.

Everyone who lives with difference does.

Sunday, July 24, 2016

Wendy on His Way

Yesterday we stopped into the pub for a quick couple of drinks before heading home. I've written about this place before, for me it represents one of the few places of real welcome out there in the community. Real welcome happens when the place itself is structured to be wheelchair accessible and where the people who are there ensure that any blockage of a passageway because of placement of chairs or other stuff in the aisles are moved and where the locals make way at a crowded bar for a couple of others. I like going here even though we don't get there as often as I'd like.

We were chatting with two guys, one who had sprained his ankle dancing the night before and one who was talking about a twisted knee, I sat there listening and said, 'I can't wait for my turn cause I'm going to win this one without breaking a sweat.' They suddenly realized what I meant and we all laughed. When my disability is fair game for a joke, I know that I'm in a good and safe place.

Just before we left a nice fellow we've known for years, Wendy, was getting ready to leave and I saw him make his way over to a walker. We hadn't seen him for a long time and were surprised to see the walker. Wendy is one of those guys who just never seem much to age and always has had a quick wit and a friendly approach. I never realized until then that I never knew his birth name, he has been nick named Wendy for all the years and years we've known him and I can't imagine calling him something like Charles or Henry. He's neither transexual or into drag, he's just a guy called Wendy. Anyways, Wendy had a walker.

He stopped to chat, as we knew he would, and he told us the story of getting the walker after having a few severe health problems this year. He laughed as he told the story of being in a coma for three weeks and how he collapsed at a New Years party ... and he made it all quite funny. As for the walker, his transition from walking freely to walking with a walker was made with such a matter-of-factness that I was startled. No complaining or carping about now needing a mobility device, instead he saw it just as simply a means to getting out and getting on with his life.

I sat in my wheelchair, talking to him in his walker, and there was a new kind of understanding between us as we spoke about the things we use to get around. 'It's part of me now,' he said, 'and it keeps me free.'

Wendy was free before and he's free now.

That's the point of mobility devices, you know. The only point that matters. The free stay free, the captive are let go. I wish people could understand that as easily as Wendy did ... but then, maybe, in his youth, he spent time with Peter Pan.

Saturday, July 23, 2016

Doing Damns The Darkness

Life is such an odd thing. Right now, on several different fronts, I'm going through a really tough time. As such when we drove to Saint Jacobs on Thursday night for a fundraiser for Choices in Fort McMurray on Friday in Kitchener, I felt very little like traveling, staying in a hotel, or getting up to do a lecture. I just wanted to sit in a corner and give up.

But, that not being an option, we got to the hotel. Joe went and got a few things we needed while I did what needed done on the computer and then, when he got back, he dragged me out for a walk. I enjoyed the fresh air and that frisson of excitement you get when crossing a busy road with cars that refuse to slow to let you pass, and it was simply nice to get out.

Getting up and sitting on the side of the bed, I wondered how I was going to give a lecture, particularly one with some humour in it, when I felt humourless and washed out and just tired from life. But the clock ticks and you have to get to it. So, I did. Soon we were in the car and then at the venue.

The moment we went in and joined in the buzz of excitement from the team from KW Habilitation who were putting on the fundraiser, things began to change. We watched the bake table get set up, Joe snatched a strawberry and rhubarb pie right off, we met the a fellow with an intellectual disability who was going to be selling 50/50 tickets and he was into sales from the get go, we saw the preparations for the lunch that was going to be on sale. We talked with people about what the fundraiser was about and why it was important.

For those who don't know Vita organized a (we hope) province wide fundraiser for Choices Association for Community Living in Fort McMurray. We called them to see how the wildfire had affected people with intellectual disability in Fort McMurray given the devastation to the town. What we heard was distressing and we received permission to go ahead and attempt a big fundraiser along with other service organizations serving people with disabilities across the province. Communities Support Communities, we called it - and this was part of that initiative.

By the time I was to start I had picked up from the mood of the room, from the determination to help others, from the general excitement that comes from an audience that's at a lecture on a Friday for a good cause. For the whole day I was away from cares and concerns and worries. It was a wonderful break.

Doing good things, and the right time, can have a remarkable effect. "Doing Damns the Darkness," for me is more than a phrase on this blog, it's a reminder to me that I can take action against anxieties and worries and 'things that go bump in the day'.

I have another, the last one, on Thursday, and now, I know it's there to help others, but it's going to help me too.

I'm good with that.

Friday, July 22, 2016

Strangers: An unanticipated post

I don't get tired of it. I've had the power chair for many years now and I don't get tired of the independence it gives me, the way it allows me to make a contribution to my life with Joe. We had arrived home and were expecting company in just under an hour. I had to run up to the bank and Joe needed to unload the car. I hopped in my chair, came down the elevator with him and then while he headed to the car, I headed to the bank.

We are together a lot. Even so, I still love these moments where it's just me doing what needs to get done. I went to the bank, bought a lottery ticket, and then headed home. I decided to come along the north side of Bloor Street to avoid the construction constriction of narrow passageways on the south side. I regretted it almost immediately. I was like a tiny little boat going west as a tidal wave of young teens came east. There were hundreds of them. All packed together, leaving very little space for anyone else on the sidewalk.

There was nothing to do but go forward. I'm not fond of being surrounded by kids this age, I have uncomfortable memories of being that age that I don't think I need to explain. Anyway, I headed on. An odd thing happened. Three times.

I was noticed by a small group, and they immediately started the pointing and the taunting. IMMEDIATELY. I tried to maintain dignity and keep going. But, only seconds later someone near them, someone their age, a peer, turned and told them to shut up. The voice was stern, not angry, and firm, not emotional. It was just a statement. SHUT UP. The voice carried authority. I looked at the young woman that spoke and she was pretty and petite and powerful. Her voice brooked no opposition and they silence. One even mouthed to me, 'Sorry.'


Then it happened again. Another group started and another voice, male this time, spoke up. 'That's not cool, stop it,' he said. Again, a voice of authority. A voice that said, 'I mean this.' And, amazingly, they did. They did stop. I looked at him, again, a handsome fellow, athletic looking, I nodded a thanks that he brushed away.

Wow, encore.

And then it happened one last time. They were almost by. I'm not kidding hundreds. A young woman made a fat joke to the girl she was with, I heard it. I won't repeat it. The girl who spoke was as shocked as I when her friend turned to her and said, 'Why are you being mean? No need. No need.'

Then, they were by me.

I don't know who they were, where they were from, what brought them together. But I do know that there are some parents, or teachers, or mentors that should be really, really proud of the work they've done. I also know that there are some very cool teens who have discovered a way to break the code of silent acceptance of casual cruelty.

And for that, I'm thankful.

And for that, I'm hopeful.

Tuesday, July 19, 2016

A Big Deal?

Joe pulled into the parking spot and I climbed out of the car as he unloaded the wheelchair. He had to gather some stuff in a bag so I headed on to the nearest mall door. Being able to push up a slight slope over a bit of distance has really freed me to get about my business while Joe is doing what he needs to do. I got up the curb cut and was heading to the door.

There were two sliding doors so I chose to enter the one closest to my approach. I noticed as the door opened that there was a fellow with cerebral palsy walking along the sidewalk towards where I was entering. I nodded. He nodded. In I went. I had just gone through when I was faced with another set of doors.

Before I could register where would be easiest to get through, the door behind me opened and a voice said, "go to the door on your left, it's hard to tell, but it's automatic." I turned, and thanked him. He smiled. "We've got to have each other's backs," he said. I agreed.

I went through the door that he had recommended and it indeed slid open for me, and I was inside the store. Joe then joined me and we headed about shopping for a birthday present for a friend.

It's tempting to say something like 'such a small thing can make such a big difference.' And, in fact, that was my first thought about the whole thing. But, I realized, when I thought about it, that it wasn't small at all. In fact, I think we make things like this 'little' ... like a 'little act of kindness' or a 'small gesture of welcome' ... when they aren't little or small at all.

Thoughtfulness isn't natural and it's always intentional. People may say otherwise, but I don't believe it to be true, I believe people need to see where their actions could make a difference and then after noting it they have to act on it, that, in and of itself, is astonishing. People may brush aside their actions by saying 'anyone would have done it, when in reality, very few would have.

However you want to frame it, he affected my day, my evening and my next morning. I can still hear his voice in my mind. It's a big deal.

It mattered.

And I believe he meant it to.

Monday, July 18, 2016

So Cool It's Cold

At our beach picnic on Saturday, we had some issues with accessibility. All of which I kept my mouth shut about. We were out with Ruby and Sadie and they know well enough about access and access issues, sometimes I want it to be just fun.

The problem we had was that the benches alongside the boardwalk weren't attached right to the boardwalk. Some of them were, all taken, but most were set off to the side. So there was no access from the boardwalk to the bench. I began worrying that we'd have no where to sit. But then I noticed, way up ahead, a spot where there was a connecting path between the boardwalk and the bike trail. I zoomed up, rode down to the bike trail and then approached a bench from behind. I got us landed.

Now there was this huge barrier between me and the beach itself. I hadn't planned on going on the beach, sand and wheelchairs along with my weight do not for a good roll make. But the barrier was glaring and made me feel like I was sitting much lower than the boardwalk and looking over it, because, well, that's what it was. But I kept ;my mouth shut. We were here to have fun and, in fact, I was having fun.

So were the kids they were in and out of that cold Lake Ontario water getting closer and closer to jumping in each time. They both made it right under the water and then ran pell mell up onto the hot sand and plopped on it, soaking up it's warmth. They loved the contrast between the cold water and the warm sand.

At one point Ruby ran up to the boardwalk, crossed over and jumped down to where I was. She was full of stories about how cold the water was and how hot the sand was. I listened to her tell the story while she was covered head to toe in sand and not minding it one bit. Then she said, 'I have an idea.' I watched her run back to the beach grab the sand bucket and run to the water. She scooped up the water and ran back to where I was, jumping down and sloshing water everywhere. 'Put your hand in the water,' she commanded. I complied and remarked that it was indeed really cold.

She was gone again. This time she just crossed over the boardwalk and then dumped the water and found a spot and scooped sand into the bucket. Back she came, jumping down to me and holding out the bucket, and said, 'Put your hand in the sand.' I did and felt the warmth.

'There,' she said, 'you got to feel exactly the same things that we get to.'

And she was off, back across to where Joe was standing and I heard her explain to Joe, 'Just because Dave can't come over here doesn't mean he shouldn't feel the lake to touch the sand.'

And, of course, she's right.

There's all sorts of ways that a place can be made accessible.

And by the way, after all these years of living here, that's the first time I've ever touched Lake Ontario.

That's so cool it's cold.

Sunday, July 17, 2016


We were having an amazing day. We'd been the the beach and had a picnic. As always we brought both chairs, the power chair and the manual, which was used to haul stuff and to give me seating options. When we arrived there wasn't a picnic table available we pulled up to a bench, I transferred into the manual, we lifted the arms on the power chair, put the table cloth over the seat and voila. It was great.

Sadie spotted the ice cream truck just before the bus was to arrive to pick us up so I asked her if she could wait til we got home and then we'd go out for ice cream. She agreed just as she spotted the bus turning in to pick us up. Our ride home was fun, the whole day had been lovely.

Once home and showered, sadly there's less of a beach left for other people because a couple of buckets of sand washed itself down through our bathtub drain, we left to get ice cream. I held the table on an outdoor patio a couple blocks from our home. It's my favourite patio for having tea and people watching and I smiled as I watched them cross over to me, hands full of cones and sundaes. Joe then headed in to get us each a tea and the seconds later was back.

Everyone was in a brilliant mood, Ruby and Sadie were at their best, sharp, funny and inventive in their story telling of the day. We played a game to see who could give the meanest look that had us all howling. It was awesome.

Well, to us at least.

An elderly woman had come out and sat at a table furthest from us. She was clearly in a cranky mood and looked over at us and the kids with annoyance. Let's face it, this is Yonge Street, right down town, it's not a fancy table at a tea shoppe in a meadow in Wales. It's noisy. And we were noisy. We laughed a lot.

At one point, after several really nasty looks, she'd have won the contest, hands down, I'd had enough of her sighs and her cursing under her breath. I looked at her, and said, "Oh, come on!" That's all. I wanted to know that she'd been seen and that, really, she's upset about kids laughing?

Kids should be laughing all the time. Childhood should be full of laughter. I was laughing. I should be laughing more. Joe was laughing, his life needs more of that stuff too. We were all getting a lot of oxygen and exercising our senses of humour.

The interesting thing was, as soon as I said what I said, her face changed. She stopped. She looked over and saw the girls curled up in laughter as Joe was trying to make a mean face, which he was hysterically bad at, and her face softened. It was like she connected the noise, which was irritating her, with the source. He whole body seemed to just relax.

I caught her a couple of times smiling when the girls said something funny. Like Sadie's dramatic announcement that's she's having a really, really, bad day and that we had to treat her nice with extra ice cream. And Ruby's commentary on the actions of the security guard.

She said, 'Bye,' when we left.

I've never had that kind of encounter before. I expected her to become more hostile or to turn her chair completely away. Even so, I wanted to let her know that her actions were completely out of proportion to what was going on. But it was like throwing cold water on an unnecessary fire. She just, suddenly, became a nice old woman.


Yet I know I've been called on my behaviour and immediately changed.

So, maybe not so odd.

Saturday, July 16, 2016

Being The Trigger

"Do you have diabetes?"

As a question from a stranger, it's way too personal. But as it was a conversation that I just fell into and as we were both talking about general health and wellbeing, it didn't seem out of place, or out of context, so I answered that I did indeed have diabetes. I am no longer insulin dependant, because of the diet and exercise program I've had myself on for several months, but yes, I have diabetes.

It was then that I remembered why I don't like telling people this fact.

Everyone has a story about diabetes, it seems. And every one of those stories is a horror storry. She, my conversation partner, launched into a very detailed story about her sister in law who has diabetes and stubbed her toe.

"Just stubbed her toe, a silly little thing like that."

Boom Boom Boom, it's coming, Boom Boom Boom.

"And three months later she lost her foot."

From that she went to a huge generalization, "People with diabetes just don't take care of themselves."

I called her on that one.

But, here's the thing, why would you just automatically tell someone, who has any kind of illness or disease the most outrageous and tragic (in your mind) story you have to tell about that diagnosis?

My response was, in my mind, 'shit why did I tell her.'

I have heard, when telling someone about having diabetes, about lost digits, lost limbs, lost mobility, lost lives. Yikes and double yikes, it's like every story I hear is about this Boom Boom Boom tragedy that lurking around the corner waiting to strike me. And, I kinda know that might be true, but I don't need to hear it every single time I mention that I've got 'the sugar'.

In fact, when I was telling a group of friends about this experience and complaining about always being told a tragic story when mentioning the diagnosis, one of my friends jumped in with a tragic story about someone losing a leg. Right. Yea. Glad you were listening.

Does that happen to anyone else? Are you the trigger for a 'tragic story' to be unfolded on your lap?

Sheesh, I'd like to hear once, just once, about some who has diabetes and 'you know is managing pretty well!'

Right, in my fricken dreams.

Friday, July 15, 2016

My Mount Everest (and a note for DSPs)

To you, maybe it's a ramp, to me it was Mount Everest.

All the disabled parking was taken. There were virtually no other cars in the parking lot, but the 10 disabled bays were jam packed full. So Joe let me off at the front of the building and went to park further away. I turned my chair, I was in my manual, and considered the ramp.

It was long, so long that they'd put a four foot flat space about 2/3 the way up, a place to stop and rest. It was steep, really steep, I'm sure it was legal, but I'm also sure that mountain goats would have rested comfortably on the slope. I rolled over to the bottom of it and looked up. Way up.

I knew I had time because Joe was parking, as I said, a fair distance away. I've been lifting weights, I am noticably stronger, but this was a big ramp. Suddenly I knew I had to try. I started.

Yikes. And yikes again.

Steep ramp, long ramp, fat guy in a wheelchair, those three things combined suddenly to make it really hard work. I'd gotten about half way up the first incline when I just knew I couldn't do it. But if I let go I'd go flying backwards down the ramp. Unpleasant images formed in my brain and I knew that option was out. I pressed on and made the rest spot.

This is good enough. I've proved my point. I'm much stronger than I thought I was. But the top was so close, I'd rested, I looked and still no sign of Joe. I edged to the edge and then pushed. This was the steepest part of the ramp. I'm quite high up now. the ramp makes up for about a dozen stairsteps to the ground. I pushed and was now midway up that part of the ramp.

Joe sees me and reacts with shock to where I am on the ramp, which is only a few feet from the top. He comes up behind me, he knows better than to simply grab and help. He waited. My arms were straining and I was really tired. Yep, I asked for help.

We cleared the top.

No I didn't climb Everest but I almost did.

And here's the thing.

Almost is good. Really good.

Especially when 'not possible' is the starting point. I think we forget that when we are working towards a goal. I think we consider failure as our 'go to' definition of how we are doing when we don't quite make a goal on an attempt. For me, failure would have been the lack of trying. I not only tried, I got almost to the top. Next time, the top, or if not the top, closer. I feel great.

I've learned to change the definition of success. And because of that, I'm so much happier and so much more likely to continue on. This morning I added 7 minutes extra into my exercise routine using a higher weight than I'm comfortable lifting. It's just 7 minutes, but I know I need to get even stronger and I can see the top of the ramp. I need a bit more strength. So for now 7 minutes more of a weight that I struggle with.

For you direct support professionals reading this. Remember if you are working towards a goal with an individual reward effort over accomplisment. It's a fundamental when teaching someone, it's the trying that gets to the succeeding so it's the trying that needs the reinforcment and acknowledgement. Succeeding is its own reward.

I nearly cleared the top. Months ago, I would have waited at the bottom.


Thursday, July 14, 2016

hatched detached

Just how alien am I?

Was I hatched, detached?

On Sunday we went to the museum with Ruby and Sadie to see the Chihuly exhibit, which was astonishing. To hear children gasp at the sight of something incredibly beautiful and fantastical and then watch their imaginations burst on fire is part of why we try to get the kids to shows like these. To be fair, it wasn't just the kids in the room that were reacting to the exhibit with awe and, often, stunned silence. One of the best shows we've see there.

Afterwards the kids wanted to go for a bite in the 'eatateria' as Sadie calls it. As we were there and as we had time we asked if the kids wanted to go anywhere else in the museum. We're a lucky group because all of us love the place, and when they both said that they wanted to stay and both had galleries they wanted to go and visit, we filled our afternoon there.

Finally we decided to go up and visit the bees and go through the bat cave again. There was a volunteer there who chatted with the girls about the bees and answered their questions in such a way that encouraged more questions, a rare talent. So I fell back a bit to give the girls their space and to get myself out of the way of the traffic of parents and kids going through the area.

So Joe was sitting on the ledge over by the kids, the kids were at the bee hive and I was off to one side. I can see how I might have looked as if I was on my own. As such, when someone approached me with that assumption I wasn't surprised. Then I realized they were a little suspicious of me being there. I responded by saying that I was with the girls who were looking at the bees.

There was a moment of surprise.

"Oh, you have family?"

My immediate response is to go defensive and say that I'm married and that, yes, I have friends and family, and yes, I have kids in my life, and yes, I'm part of an intricate web of relationships. But I said none of those things.

I just said, "Yes."

Being different, being disabled means always being on the spot to provide education to people both about disability and difference but also about who you are and how you live your life. But it isn't always education, is it, it's a kind of 'justification' of your existence as a fellow being.

When education begins with the question 'Oh, you have family?' you realize exactly how far we have to go.

Because apparently.

I look alien enough to be hatched detached.

Wednesday, July 13, 2016

ETA? Is there one?

Why is growth so painful?

I thought by now, I'd be at the point of my life where there's be a kind of 'grizzled wisdom' that comes with age. Where I'd be letting pearls of enlightenment fall from my lips. Where I'd smile knowingly at those younger than myself and gently guide them along.


Didn't happening.

I'm still mucking up. Making mistakes. Learning from them.

Gotta say, little angry about that.

Living life and being engaged with it, I suppose means a constant exposure to questions and situations all of which come with the potential of error and misjudgement and just plain fark ups.

Sometimes I want to just stop and yell at the sky - NO MORE GROWTH OKAY, I'M GOOD, I'M DONE.

But the sky would just look down with benign silence and life would move on and I'd step in a puddle on the way home.

I thought the train had arrived at the station.

But it hasn't.

The journey continues.

I'm wiser but, ouch, the bruise is still pretty colourful.

Saturday, July 09, 2016

Until We Cried

"We need a green pepper," Joe said as we headed home. We agreed that he'd run into the little local grocery store across the street from where we live. I can go in there but I never do, it's just accessible enough to be called accessible but the size of the store makes it such that it takes work and the cooperation of others in order to get around. I wait outside. So as we near the store, Joe veers off and I head to a small outdoor plaza area.

Just as I go up the ramp to the plaza I make a turn to my right. Doing this I cross right into the path of the man coming behind me that I didn't notice. It startled me when I saw him and realized that I'd cut him off, I said automatically, "Sorry." He, though he'd been cut off, also said, automatically, "Sorry." When he did this I made the remark, more to myself than him, "We're so Canadian."

It's probably a myth that Canadian's are a really polite people, but we are a people that readily apologizes. I once heard two fight attendants joking as they were walking to their gate, "Let's go through Air Canada's gate and bump into people, they'll all apologize to us." And it's true that's what we do. So that was the context under which I made my remark.

But my remark had a different effect.

The man stopped.

He turned and looked at me.

"What did you say?" he said, I could tell he was emotional and I immediately felt badly, what had I said.

"I'm sorry," I said, it's a good go to position.

"No, what did you say? When we almost crashed, what did you say?"

"I said, 'We're so Canadian' we both apologized and that's what Canadians do."

It turned out that he was a recent immigrant to Canada from Syria, he was Muslim, and he had been feeling that he wasn't adapting to the Canadian culture. Our little interaction was the first time he'd been called a Canadian, spontaneously, by another person. "I thought that the only thing that people could see when they looked at me was ..." He never finished, he was overcome.

He stepped towards me to shake my hand, I shook his. I said, "Welcome, eh?"

And we both laughed until we cried.

Thursday, July 07, 2016

Not Getting It Quite Right

From their web page I discovered almost everything I needed to know. They had a diverse menu, complete with both vegetarian and vegan offerings. They were located right near where we were going to meet our friend. They had really good reviews. I looked, found their phone number and called them.

A friendly voice answered the phone. I asked them if their restaurant was wheelchair accessible. "Yes, we are!" she stated with some excitedment. Then I was told about the flat entrance and the fully accessible washroom. "We are quite proud of the access we provide," she said.

I never know what to say when someone says that they are 'proud' of being accessible. At an earlier stage of my life with a disability I would have said something like, "and you should be!" I don't say that any more. I guess because I think accessibility should be a given not a gift. But, since she was in such a good mood about it all, I thought I'd press the point.

"Well, you aren't completely accessible," I said. She rushed to assure me that they were. "The thing is," I explained, "If you were fully accessible, I wouldn't be talking to you at all. I went to your web site, like any other customer, checked out your menu, like any other customer, and now I have to call you, unlike other customers, because you have no information about your accessibility on your website. There is still an extra step in the process for disabled people. If you want to be absolutely, fully accessible, you need to remove that last step."

There was a moment of silence on the phone.

I felt ice form.

Then, after that frozen pause, "OK, I've noted it down. I'll give that to the owners." Then I felt really bad, like I'd taken the wind out of her sails about the accessibility of the place. She sounded defeated.

I thought I was being an advocate but I was being a bit of an asshole. See it's this personal bugaboo of mine, I believe that it should be manditory that restaurants and bars have an accessiblity notice on their websites. I once spent an hour in Baltimore calling restaurants trying to find one that had vegetarian options and was wheelchair accessible. It pisses me off. I don't think I should have to call. I think they should just tell you on their site. I had brought all of that into a conversation with someone who was excited about the fact that the restaurant she worked in was accessible.

I don't regret mentioning it, but I could have done it differently. I didn't need to challenge her assertion that they were accessible, because I wasn't really doing that, I was challenging her.


Sometimes this advocacy thing is hard to get right.

Wednesday, July 06, 2016

In The Shade of Silence

I ran into someone the other day, we haven't seen each other in years.

A lotta years.

In fact, I didn't recognize him at first as he ran over towards us. We had passed a patio that he was sitting on and barely heard him when our names were called. We turned and watched him approach. I asked Joe quietly, "Do you know who this is?" Joe answered in a whisper, "No." We took his warm greeting and after a couple of seconds I knew exactly who he was. I used his name in a sentence so that Joe would catch the drift as well. But even as I said his name I could see Joe had remembered.

We're going back to when we first moved to Toronto, late 70's, that's a long, long way back. He'd been a bartender in a bar that we used to go to all the time. It was a different era and you had to go down an alley and then down dark back stairs to get to it. I always felt safe going in, we could see the alley plainly, but no matter how drunk we were, I left wary. Opening a door onto an alley when you are a hated minority is never an easy thing to do. We were very lucky to never have been assaulted there, others were less lucky. Safety should never be a matter of luck.

It was nice chatting with him, he's still way younger than us, by 11 years. Those 11 years don't show now as much as they did then.  He seemed like such a kid back then. We're all pretty seasoned now. As our chat grew to a close he said that he'd recognized us immediately because "Neither of you has changed a bit."


I'm sitting in a big ass wheelchair, I'll tell you for certain that it never went down those steep back stairs.

"We'll we've changed a bit," I said.

"No, not one bit," he said steadfastly ignoring the fact that I was sitting in a wheelchair looking up at him rather than on my feet looking down at him.

I pointed to the chair.

I didn't want to make further issue of it so I let it drop. We continued on and then it was time to part and we all agreed it was nice to see each other and catch up. And it was.

My guess was that he was 'being polite' and 'didn't want to mention the chair.' I have met with this before people 'being nice' and 'purposely not noticing the disability.'

Why is it polite, or nice, to erase a big part of my life. I have changed, yes. I have a disability now. It's OK, it's just change. It's just different. It isn't shameful. It isn't like a new piece of me that has to move back into the closet. For heaven's sake, I'm out about being gay and I'm out because I'm in a wheelchair.

It probably sounds like carping over something trivial, but to me it isn't. I don't like even a brush with shame, had enough of that in my younger years. That stuff stinks.

Pride is pride, isn't it? And it never blossoms in the shade of silence.

Tuesday, July 05, 2016

Stranger: Four Point Five of Five

There are moments of pure clarity.

Cradled in her father's arms she was brought over to where she had pointed. She had directed, father willingly followed. Joe and I were on a patio watching the activity around us. It was then we saw father and daughter making their way over to a big black box, but don't be deceived, the box produced bubbles by the thousands. They flew out and up and then every which way. Several had made their way over to us, we both, taking one of life's opportunities to be kids again, tried to catch them. She took catching bubbles quite seriously for a moment, looking surprised when they'd pop in her hand. One of them brushed her cheek and she startled. She was fresh out of babyhood and to her this was simply wonder. And then. Then. She laughed.

Father and daughter stayed for a few minutes more, then he kissed her, helped her grab a bubble or two more, and then headed off. She looked back over his shoulder, at the bubbles, and waved. I don't know where they were going, or rather, I don't know where she was going, this tiny little girl with Down Syndrome, but I knew, with certainty where she wasn't.

I knew that she would not grow up in a crib on an institution ward.

I knew that she would not be sent off to a segregated school to receive lessons in exclusion.

I knew that she would not be hidden away in a basement or an attic or a back room.

I knew that she would not live a life without goals, without successes, without expectations.

Her father's warm embrace, the gentle way he kissed her, the joy he took in helping her catch bubbles told me even more.

I knew that she would grow knowing love, expecting love, secure in love.

I knew that she would have a gentle, guiding teacher.

I knew that she would have a protector and an advocate as she grew.

I knew that while she would have battles to fight, she would fight on firm ground. Ground already won. The school - won. The playground - won. The community - won. She'd fight her battles but far, far, far from the starting line.

And I knew something else and I knew it with fresh clarity.

Those of us who work or have worked in the community living movement made it possible for a little girl's life to begin, differently. Every parent who cried bitterly after a fight with the school board. Every staff who listened carefully and then supported someone with a disability to do something magical. Every single person who volunteered, who gave time, who welcomed in, made it possible.

Sometimes when I'm tired I wonder if it mattered. The work I've done. The work we've done. Then, at moments like these, watching a little girl, safe in her father's arms reach out to play with bubbles, I know. Deeply know. That it matters.

I don't know about you, but I believe we need these moments.

I certainly do.

And I didn't know how desperately I needed it until I saw her tiny little stranger's finger determine the direction that she would go. So tiny, so young, and already confident enough to say, in the only way she could, 'there, I want to go there.'

May she be able to direct her life, for the rest of her life.

Monday, July 04, 2016

Unanticipated Care

Yesterday, I simply couldn't take it any more. The night had been hell, the day didn't seem to promise better. I woke Joe up and said, "I have to go to the hospital." I had developed a small cough on Tuesday of last week which had gotten worse, day by day. I'm not someone who runs to the doctor, or anywhere really, I figured it was just a summer cold. But when I got up from that night, I knew I was really sick.

We got ourselves together and entered the hospital at 8:30 AM. I was sick, and scared. I absolutely trust my doctor, he's proven himself over and over and over again to be a smart, kind and compassionate man. I feel safe going to his office. I don't feel safe going into a hospital in a vulnerable state to be dealt with by strangers. My weight and my disability bring forth prejudices in all sorts of places, but, my oh my, have I had my share of a medical system that can't hear my symptoms because they've already determined them.

We see the triage nurse first. She is a bit surprising. She asks me questions about my cough, in response to the question, 'have you been out of the country' I answered, 'yes,' she looked up concerned, 'where?' I said, 'Pennsylvania' a small smile told me that this wasn't as 'out of the country' as she might have first thought. After a few more questions she told me I'd need a room and that they were stacked full but she'd get me in when she could.

Happy Pride Day!!

I realized I'd left my work phone at home so Joe went to get it. Vita was in the parade and I wanted to be in contact with them throughout the day. Just after he left, I was invited in, a room had become vacant. I'd been there, maybe 10 minutes. Once in the room, I had to organize it so there was room for both my chair and the bed. Joe got back, quickly having taken a taxi home and back, and just sat down when a woman came in with an ECG machine (the thing where they put sticky things around your heart and then attach you to it. It looked like they were doing an experiment on my left boob) and in a quick and friendly manner explained that she was not my assigned nurse but as my nurse was busy, she thought she'd help out. That done. Then blood drawn. Then goodbye. Two seconds later I was taken to the xray room where a really young woman, they are getting so very, very young, guided me through the process of getting an xray while in the chair.

Back in the room, we quietly read for about ten minutes when the doctor arrives. I have pneumonia. I told you I was sick. He wants to wait for the blood work but as I'm relatively healthy, he wasn't worried. He left promising a prescription, a note for work and a thing to take to my doctor.

All through that, all through, I was treated like a patient. I was listened to. I was asked questions about my symptoms not my body. I was spoken to with both respect and kindness. One by one my fears were proving, in this case, I'm not naive, to be groundless.

Just before 11 we were out. On the way out I wanted to thank someone, not just for the service but for how it was performed. I wanted them to notice, because good people don't, that they had been good people. They had treated me with respect.

But, when I came out of the room, there was no one there to thank, I went to the triage nurse but there was another person there. So, I just left, carrying my thanks in my heart.

I had not been degraded.

I had not felt dismissed.

I had feared for nothing.

I've mentioned him to you before, and I'm sad I can't remember his name, but just after becoming disabled I was giving a lecture in Glasgow somewhere. I spoke with a man who unlike me had been born with his disability. I asked him for advice, as from a mentor, he said, "Don't ever get in the habit of being grateful for what other people simply expect." That has really stayed with me. I see a wisdom behind it. But I failed him as I left the hospital, I did feel grateful.

I had been treated well.

And I was back on the road to becoming well.

All in a couple of hours.

Sunday, July 03, 2016

You Can Sit With Us!!

Image description: A green shopping bag with the slogan 'YOU CAN SIT WITH US' emblazoned on it above, in much smaller print, PRIDE TORONTO 2016

"You can sit with us"

I think everyone remembers a moment, some of us will remember many, when we wished, with all our hearts, that someone, anyone, would have invited us or welcomed us to a seat at their table. Those moments of sheer isolation are searingly painful, when the recognition that you are utterly alone, carries with it blame: 'you're different, your fault.' The drive to belong isn't just a drive to fellowship, it's also a drive to affirmation - I am likable, lovable, worthy.

"You can sit with us"

That's the slogan or theme of this year's Pride celebration in Toronto. It's the first I've really taken notice of, most of them haven't had much shelf life in my memory because, for me, they didn't really have resonance with the life I lived or am living. But this year, when I read the theme, 5 simple words, I felt an immediate connection. So much so that I had to gulp back tears. Oh, my, gosh, words that I longed to hear for years, the invitation that never came in time, oh, my, gosh.

"You can sit with us"

On so many levels this is a beautiful theme. It encompasses so much of what we long for as human beings, it counters the messages of rejection we hear too often and it offers embrace in place of rejection. More than that it is the solution to bullying, it is the solution to alienation, it is the solution to intolerance. Offering a place at the table, a voice in the discussion, a welcome into membership is risky business indeed. You can't offer a space beside you without being willing to create space, just a little more, within your own heart.

"You can sit with us"

I admire the theme. I admire the goal. I admire every honourable sentiment behind it. I even admire the fact that it was written without exclamation marks. It's written to be said, not shouted, spoken, not announced. But I hope for more. I hope that after the march today and the party tonight that people will wake up tomorrow morning and glance over at the tee shirt or shopping bag or sticker and see the 'You can sit with us!!' logo and, perhaps, think about it a little bit. There is a call there to become a welcoming community. There is a quiet urging about the words that should lead to a kind of self examination, are we as proud of our diversity as we are of our difference? Are these words we would really be willing to say, to someone, with different differences?

"You can sit with us"

I bought a shopping bag with the slogan on it. I wanted to be reminded of my feelings when I first saw the words. I used it shortly after, in a store near where I live, one of the clerks noticed my bag and said, "Well, you've got the right bag for the weekend." I agreed that I did, he then stopped, turned, and said to me, "Awfully big words, aren't they." "May they one day be true," I said. He nodded. I don't know his story, probably never will, but I know one thing. He once, like me, looked for a welcome he didn't receive.

"You can sit with us"