Sunday, May 31, 2015

Lucky for it All

I'm feeling like one of the luckiest people alive.

This is not an unusual feeling for me, I have it many times over when I'm with Joe and we are laughing. There was a moment, a couple days ago when we were in Vancouver, in the evening, in our hotel room, when Joe asked me how things were going to change once we're married, I responded, "I'm gonna let myself go." And then we laughed for nearly five minutes as we built on that one statement back and forth, with each other. I felt lucky to get to have this relationship and be laughing at full force 46 years in.

But that's not what I'm writing about today.

I am a wheelchair user, who flew to Vancouver, went over to the island and visited with family. On our way over and back we took the ferries and I got to roll around, unimpeded throughout the boat. I saw the beauty of islands and coastline and had time to chat with people on the boat in the way that strangers chat with strangers. On our way back we went down to the car deck early and I rolled myself to the back of the ferry and along with a few others sat in the sun, watching the present become the past as we headed forward. I had thought when the wheelchair rolled into my hospital room eight years ago that this was over for me. It isn't. It has never been.

But that's now what I'm writing about today.

I attended and spoke at the Inclusion B.C. conference. I did two sessions for them and then was part of a panel that served as a plenary session for everyone attending the conference. It was a panel that was about language, the power of language and asking how language should frame our movement and our future. It's an interesting and timely talk. When it came my turn, I rolled to the front of the stage and looked out over a sea of faces, six, seven hundred faces, and I began to speak.

This is why I'm feeling lucky. To be given the opportunity to say my piece in front of a crowd of people. To be seen as someone with something to say. To have a chance to influence discussions and spark debate is an astonishing honour. I rolled off that stage feeling so full of the experience that I was near bursting.

Later, when it was over, all over, Joe and I went out to a small place we found near the hotel for a tea and a beer. We sat together and watched people pass by on the street. We were both quiet. Joe, of course, knew, without me having to say, what was going on in my head. "A long way from the hospital room aren't we." I told him that it was. But that it was even a longer way from the hallways of the schools where bullies called me names suggesting my worthlessness and teachers predicted a future with no future.

It's a long way.

Many times in my life I wondered why the road I've been on has been so hard. I'm beginning to realize it's because the destination required the journey.

On that stage, in that moment, I realized that something else. Yes the destination required the journey, but the destination was worth the journey.


I'm feeling lucky for it all.

Every last bit of it.

Friday, May 29, 2015

An Afternoon at the Movies: Wow

Part 3

When we got to the van that was parked beside us, I asked Joe for a pen to write down the name that had been branded on the door. Inside was a woman who I asked if she was waiting for a couple of people in the theatre. She was. I felt sure I had found the right organization and was already planning the letter.

I got into the car and waited while Joe loaded the suitcase. Walking towards the van were two men with disabilities with a support worker who was patiently waiting for them. I looked again. The van wasn't a wheelchair van. I asked the woman in the van if she was waiting for people who were wheelchair users, she was not. Then I looked at her again.

I had seen her.

She had been with a fellow in the same movie.

About midway through the movie, when it was getting really good, she had left with the man she supported. I thought that maybe he was going to the washroom, but he hadn't come back. She and he had waited in the van for the others. He hadn't wanted to stay so she simply followed his wishes and left.


She knew that he was going to the movies, she was not. She was supporting him at the movies, not going to the movies with him. She was there to meet his needs, not hers.


Further, he had not sat with the other two who had attended from the same organization. The two of them sat in a different place. There was no effort put into having the staff sit together surrounded by people with disabilities. They each, the two staff, sat in different places with different people. Clearly the people they supported made their own choices regarding seating.


The best of support.

The worst of support.

And how easy it is to see the difference.

(Continued tomorrow.)

Thursday, May 28, 2015

An Afternoon at the Movies: It continues

Part 2:

The movie started. Once the woman next to me was finished with being helped to eat. The support worker with her jumped up and went over and sat with the staff at the other end of the row. Left alone, the woman soon began very low sounds. These sounds over a 5 or 10 minute period became louder and louder. Eventually they were loud enough for her staff to come back to her and sit with her for a few minutes. She quietened down immediately. After three or four minutes of quiet, the staff ran back to her seat beside her co-worker and then, shortly, the low sounds began again. This went on through the entire movie.

I was not bothered by the sounds the woman was making. I was, however, bothered to distraction by the behaviour of her staff. The pattern was so clear. Sitting alone ... low noises becoming louder. Sitting with someone ... no noise at all. Alone -noise. Not alone - quiet. I don't know this woman, I don't know what her disability is or what kind of support needs she has. But I do know that her sounds meant, 'Please sit with me, I don't like being alone here.' It was as clear as any communication I have ever seen from even speaking people.

I had already had a confrontation with the coworker for pulling her phone out, letting it's bright light shine throughout the theatre. I asked her to put her phone away. In fact I asked several times for her to put her phone away. Finally she turned the phone to me, showing me only bright light, and said, "It's not a phone! Now watch the movie.!!" She still saw me as a person with a disability whom she had a natural right to order around. I said, again, "Turn off your phone!" She did. I was aware that this interchange had interrupted the movie for others. I didn't, now, want to start a fight with the other staff for using abandonment as a staffing approach.

On the way out I saw the staff who ran back and forth between the seat beside the woman who wanted company and her co worker. I spoke to her. I asked which agency she worked for. When I told her, in answer to her question, that I wanted to report terrible support for people with disabilities. She started to speak about her co-worker, who was in the bathroom with the person she was with, and that she was just trying to help me find a seat.

She looked shocked when I told her that the person I wanted to report was her. I told her that she abandoned a woman who clearly wanted her to sit with her. I told her that she was not paid to go to the movie with the co-worker but to be with and provide support for the woman she supported. "Didn't you hear her call out for you, over and over again?" She became flustered and started to answer using nonsense words.

I realized that we were blocking the pathway and people couldn't get in or out of the theatre. I left. Joe rushed forward saying, "Maybe we'll see a wheelchair van in the parking lot with the name of the organization one it."


There it was.

Parked next to us.

(continues tomorrow)

Wednesday, May 27, 2015

An Afternoon at the Movies: The First of Many Parts

Photo Description: a big red star, outline in gold with the words The MOVIES written across. 
Yesterday we had a day off, with nothing we had to do, So, of course, we went to a matinee. We love catching the first movie of the day, There are fewer people there and it leaves a fair bit of the afternoon to do other things. We got to the theater, got our tickets and headed on in to the auditorium.

They had two spaces where people with disabilities could sit next to someone and two spaces where there were spaces for people in wheelchairs but no seats for anyone without their own chair. There were already two people with disabilities there, both with significant disabilities, who were with staff. The sat on either end of a row with their staff sitting beside them. OK those spots were taken.

Joe and I began to look at where we'd take up residence. One of the staff calls to us and tells us that we can sit 'there.' We looked to see where 'there' was and saw that it was at the far right of the theatre. I could back my chair up against a seat and Joe would sit in the remaining chair. I could immediately see several problems with this arrangement:

It was at the far right of the auditorium which doesn't give a great view of the screen.

It wasn't designed for wheelchair seating so I'd be sticking way out and thought I wouldn't be in the way, I don't like sticking way out.

It still wouldn't be possible to sit beside Joe as he'd be behind me in that seat.

I told the staff that I didn't want to stick out and feel that I was in the way. She spoke up and began to tell me, in more assertive tones, that I wouldn't be in the way and that I should sit there. I said, again, that I didn't want to sit there. She started up again, trying to coerce / convince me that that's where I should sit.

I wanted this to end. I am capable of picking a seat. I said, "Thanks but I don't need your help."

She sat back in her seat as if slapped.

She was annoyed.

A disabled person hadn't done what she had instructed them to do.

This upset the natural order of her day.

Joe and I chose where to sit. He sat in the row behind and over my left shoulder and I sat in the row in middle front nearly but not quite directly in front of him in one of the other spaces for wheelchair users to sit. It was a good solution, the best in the circumstances.

Joe, once we were in place, leaned forward and said one word, "Staff."

"Yep, she's staff," I said, "the power kind."

Tuesday, May 26, 2015

Stop. Just. Stop.

Lydia Brown holding a sign protesting the use of contingent electric shock.
I've written, in the past, about the use of contingent electric shock. I written about the smell of burned flesh. I cannot imagine that this kind of treatment is seen as treatment and not as what it is, a blatant exercise of power permitted only because of the perceived subhuman nature of those who's lives, movements and choices are dictated by pain. I remember when the instruments of torture were called what they were 'cattle prods.'
Under the name of treatment people are hurt, humiliated and had their humanity erased.

Isn't it time to listen to the voices of self advocates and stop?

Isn't it?

Monday, May 25, 2015

Sunny, Sunny, Day

Photo description: A sunflower in a meadow looks to wards the sun.
I am sitting in the sun, reading a book. I am parked, in my wheelchair, at the edge of the sidewalk, to catch the rays. Joe is seated beside me. Behind us is a laundromat where Joe has got clothes washing. My wheelchair is locked. I am firmly in place. My hands hold the book I am reading. Joe, beside me, sitting on a florescent orange chair borrowed from the laundromat, is checking emails on the phone. It's Sunday. The pace is slow.

I feel him coming, I don't know where this sense comes from, I didn't have it when I was non-disabled, but it's true, I can actually feel him coming. I look up from my book and over to him. He's heading straight for me. I don't want intrusion or interruption so I telegraph that to him by going back to reading my book. Though I am reading, I know he is still coming. I am sitting, in the sun, in a locked wheelchair, reading a book, beside someone who is also sitting and engaged in reading an email.

He arrives.

"Do you need help?" he asks.

I look at him. "No, I don't, thanks," I say. I want him to just go away. I don't want to educate or enlighten him. I don't want to engage with him at all. I want ... I want ...

I want to sit in the sun, in my wheelchair, and read my book.

To his credit, when I politely refused his help, he smiled, nodded and went on his way.

I told myself, because I now had to stop reading and deal with the interaction, that he meant well and that I didn't want to punish him for a gesture meant in kindness.

I went back to reading.

But I couldn't.

I realized that if I looked helpless and in desperate need for help, from a stranger, when I was sitting, in the sun, in a locked wheelchair, reading a book beside someone who was obviously with me and capable of helping if help was needed, I would never, ever, ever, ever, be safe from the intrusion and the interruption, caused by strangers thrusting offers of help into my day. That I would never be anything but an object to these people.

An object that has only one purpose, to take help.

I was not a person, sitting in the sun, in a locked wheelchair, reading a book. I was an object awaiting the kindness of a stranger in order to continue my day. I was an object that simply waited, Waited for help. That's was I was. No, that's wrong, there is no 'I' here. 'I' don't exist. It does.

It does.

The thing that waits in the sun for help.

The thing that doesn't read, that doesn't enjoy quietly sitting in the sun, that isn't attached to the person sitting next to it.

"What did he think you needed help to do?" Joe asked, looking up from his email.

"Exist," I said.

Sunday, May 24, 2015

Inclusion in Words

Photo Description: A word blog with the middle words "Be a fan of RESPECT" are surrounded by the words INCLUSION, ACCEPTANCE, UNITY and FRIENDSHIP.

Sometimes small acts of thoughtfulness and inclusion really matter. I worry writing this because, like some other blogs about things that I find hurtful or bothersome, I fear being judged petty. For me it's 116 times more distressing to have people think that something that mattered to me or made me feel all warm inside is, somehow wrong or ridiculous. But, that being said, as I'm writing this you already know I'm going to tell you.

We are in Campbell River visiting family. We both have family here so, including the family we have down island, it's going to be a busy few days. Yesterday I didn't even get into the hotel room until quite late because the visiting started pretty much on arrival. It was fun though, we laughed a lot, chatted a lot and just generally reconnected. We'd been up for a long time but forgot our tiredness in the midst of conversations.

This morning I got up to an email from niece Shannon about meeting up for a cup of tea this afternoon. In the note she told us that she's checked and the place that we were planning on meeting was closed on Sunday but there was another option. She then set about giving us directions to the alternate place.

After the directions were done, she said that we could meet her there or she could come to the hotel and we could "st/roll" over together. I know that, or I'm making a good guess that, as she wrote the word "st/roll" she was smiling. And she should smile. It's cute. I'd not seen this particular play on words and I thought it clever.

That was my first reaction.

My second reaction was quite different. I was really touched. I thought it was more than clever, it was 'inclusion in words' ... it was a nice way of acknowledging that I move differently in the world It was a way of communicating that difference doesn't automatically dismiss togetherness.

In the end I've opted for the st/roll, not because we need help finding the place, but because it's now something I want to do.

Let's go for a st/roll together.




Saturday, May 23, 2015

Not Today

Photo description: On a blue backgroun with a white strip, the word 'blog' is written with a curser arrow pointing to it.
OK, I give up.

I'm not writing a blog today.

We are up, very early, and rushing around to get everything ready for WheelTrans to pick us up and take us to the airport. We fly to B.C. on the first flight out this morning. I took a few moments to sit and write a blog. I knew what I was going to write about but I just couldn't focus, what with Joe running around getting last minute things packed and with me remembering, this and then that.

I need to be able to focus to write. Mostly I write my blog is absolute quiet, actually, I write most of the things I write in silence. Both kinds. The silence around me and then the silence within me.

But it's hard to have silence when you've got a plane, a car and a ferry ride ahead of you all in one day. It's hard to have silence when you are going to see people you haven't seen for a long time. It's hard to have silence when you have Joe saying, "Will you get off that computer and help me, please!?!"

So, I'm sorry.

No blog today.

I'll, no doubt, have 'oh my Gosh' stories from the travel day to day. But I pray for a day, where not a single blog happens to me. I think you get what I mean.

Friday, May 22, 2015

Casting ... What ... ?

Photo description: A poster reading "Vote Yes: Love they Neighbour" over a background of a blue and pink triangle.
Does anybody ever wonder?

Really wonder.

What it's like to be a member of a minority required to sit back while neighbours get to vote on our relationships. Total strangers going into a voting box and determining what the course of your life will be. What it's like to hear the rhetoric around the subject of your relationship, to hear people blame your love for earthquakes and hurricanes and droughts. What it's like to have preachers, who claim to follow a loving God, say that that loving God punishes you for your love and for your life. What it's like to have a lifestyle when everyone else has a life.

Does anybody ever wonder?

Really wonder.

Why they have the right to vote on another's life.

In some societies they throw stones at gay people, in others they cast ballots.

Does anybody ever wonder about that?

Really wonder.

How it comes to be that love is ranked, measured and valued differently.

Why is your love for your partner more beautiful than mine for mine?

Why is your heart, which beats in time with mine, the one that the world dances to?

Why is your relationship sacred and mine profane?

Does anyone ever wonder?

Really wonder.

Why we humans have the need to sit in judgement on another's worth.

It must be a need.

It seems we never turn down the opportunity.

Today, Ireland votes on the 'issue' (it's an issue, think of that, an issue) of gay marriage. We may win. We may lose. But even if we win, I will look at all the no votes, the ones cast, not against gay marriage but at me, and at every gay person they know, and wonder who they are. I no longer fear them. But I don't understand how they could reconcile the act of going to a voting booth and voting about the hearts and lives of other with their belief in freedom and liberty and justice.

Thursday, May 21, 2015

Reviewing, Remembering, Readying

Photo Description: A signpost reading 'Memory Lane'
 I hadn't imagined that getting married would be such hard work. Oh, I knew there was busy work with lots to be organized. But, I also knew that we weren't going big, and that we were taking a fairly casual approach to everything but the ceremony, where we are placing most of our energies. But the 'other' work, man it's tough. I don't know if everyone goes through this, but as we plan and get ready for the date, I have been spending time thinking back over our 46 years together and remembering times, the wonderful ones, the tough ones.

Today on the ride to work I thought a lot about the day I became disabled. When I knew that I wouldn't be walking at Joe's side any more. When I knew that I would need Joe in a different way than I had needed him before. When I knew that being with me would mean that he would never be free of the effects of my disability on his life.

I'm, lucky, I suppose, because I never, once, not even for a moment, thought that Joe would leave me because I was in a wheelchair and because that wheelchair had to be lifted into the trunk. I did wonder, however, if, over time, he would come to resent the work that he had to do and the unequal nature of our relationship as a disproportionate amount of our 'living together' tasks would fall to him. Would I, as people wonder and worry, be a burden to him.

I can write this now, without crying, but only because I'm looking back in time. I'm looking from the perspective of someone who rode through these concerns on wheels. I'm OK. He's OK. We're OK. But I didn't know that then. Then, I worried. Then, I cried. Then, I feared. Let's face it, the worries and fears are real, you never know how a situation will be handled until it's handled. You never know someone mettle until it's tested.

As the bus pulled up to work, I realized that my life, after disability, went on. With adaptions, with losses, with changes and, most importantly, with Joe.

This marriage thing is an interesting journey. Everyone told me about the difficulty in coping with the details, no one mentioned the other work, the hard work, of remembering and reviewing and reevaluating past events in light of the present. That warning I could have used.

Wednesday, May 20, 2015

Political Pants

Photo description: An elderly heterosexual couple both well dressed. He is pushing a bright red, brand new walker, she is wearing matching bright red pants and shoes.
Joe and I met them as they were coming out a door I was going in. I saw them, then waited for them to come through. When I noticed the matching pants and walker, I said to them excitedly, "That's great, that's just great, you look awesome!!" They looked, um, startled. The continued past me and went down the ramp and I went into the building.

I asked Joe to run back to them and ask if he could take a picture. He said, "I'm not doing that, if you want a picture you go ask them." I knew he meant it. I knew he knew I'd asked him to do something I was too nervous to do myself. But I wanted that picture. So I screwed up my courage and rushed through the door and down the ramp and then raced towards them. I caught up to them, called out "Hello!?" and they turned to me and came to a stop.

Words tumbled out of my mouth. I said I hoped they didn't think that this was really weird but I wanted a picture of them. I took a breath to explain and in that pause she said, quietly, "Why?" OK, I thought I going to tell the absolute truth. "I am a writer and lecture on disability issues, I think a lot about disability and disability pride. When I saw you with the new red walker and you," I looked at her then, "with the matching red pants, well, it's so out there. It's a statement about who you are and the love you have for each other and it's about not hiding and about there being no shame in being disabled and using a walker. I love it. I really would like your picture."

He had been smiling the whole way through, I didn't know if it was a polite smile or a real one. When I'd done, he said, "You go ahead and take the picture." She, looked at him, with such love, and then said, "Yes, take the picture." They stood together, as I took a couple of shots and thanked them.

I love this picture.

I love what it says.

I love that they understood that their choice of a bright red walker and her choice of bright red pants were political choices. I love that they didn't think my request was silly. I love that they never questioned, and therefore clearly grasped the idea of, disability pride. I loved that I was asked why and was made to respond. I loved that they listened hard to what I was saying and made the decision to let a writer, lecturer take their picture. I love the life they have together.

Revolution happens in small choices.

Like bright red pants matching a bright red walker.

Tuesday, May 19, 2015

Doors, Voice and Frustration

I'd like to describe two incidents to you and then chat a bit about what happened. So let me take you on the journey of one day of being out while in a wheelchair.

First, we had gone into a grocery store to get something that we wanted to make for supper. They didn't have it, I pouted a bit because it's what I wanted, then suggested to Joe we go to the grocery store we usually go to, even though it's further away, because I knew they had it there. He was totally good with that because, well, he was pouting too. He took the cart back and I followed. I stopped on the way and found some chocolate covered, maple peanuts boxed as Canadian Bear Poo. What a find! We're giving the girls each a stuffed Paddington Bear and thought this a perfect accompanying gift. Joe said he'd take it through the checkout line. I said I'd go ahead over to the other store to get what we needed and he could meet me there.

I got to the store, hit the button for the doors to open. I like this mall because when you push the button both the large doors open and entry is really easy. I come in and a fellow, in his twenties, sees me and holds open both doors. The problem is that the only way to do that is to stand between them and hold them open with both arms. He had ear buds in he couldn't hear me saying, "Could you just push the button please." He's glaring at me because I'm not going through. I can't go through because, obviously, he's right in my way. I'd have to go through him to get through the door because he's standing right in the way. The doors are open but he's in the middle. Finally a woman, closer to my age, comes under his right arm, walks around the door and pushes the button, the doors open wider, freeing him, and he, gives me one more glare and stomps off. I go in the building. Frustration built up inside me to the point that I was almost drowning in it. But I was in, I distracted myself with doing what I was there for.

Advance about an hour.

I am crossing the street, at a light. As I approach the curb a woman begins the back and forth dance - the one that indicates she doesn't know where to stand that would be best for me and as a result she's stepping forward then back. I don't need to do anything because I'm turning and crossing the road, as she is set to do, therefore won't come anywhere near her. When I get close to her I say, rudely, "Settle yourself, I'm turning here too." She said, breathlessly, "I just wanted to make sure you had the room you needed."

We waited for the light.

I had this feeling that I'd just been an asshole. I was rude to her and didn't need to be. Just before the light changed I turned to her and said, "I think I was rude, I didn't mean to be, I just didn't need you to move for me, I should have spoken more kindly." She, again, smiled and said, "Really, I just wanted to ensure you had the space you needed." I said, "I know."

I don't want to turn rude. I don't want to turn into what others would think is a bitter cripple. It's just that I get frustrated, really frustrated with interacting with people helping me, particularly when help, as it often does, actually is a barrier to me getting where I want to go, getting done what I want to do. Sometimes the frustration with one situation will come out in the next situation. I have to try and ensure that I have more control, to make each interaction the first interaction, start fresh every time I approach a situation.

But, I'm finding that hard.

Does anyone else?

Monday, May 18, 2015

Intentional, Flowery but Warm, Welcome

Photo description: Ladybug siting, in the sun, on a daisy.
There was a ramp up to the door of Ladybug Florist but when I looked at it, and glanced inside the shop, I decided that the fact that my chair was wider than normal and I wasn't sure of my ability to get up the ramp and through the door, I'd wait outside. It was one of our first really warm days and I was enjoying the feeling of sun on my back and the warmth that the sun seemed to generate in passers-by. Finally Joe came out and told me that we'd be speaking with the owner of the shop in a few minutes.

We waited and talked, we had a clear idea of what we wanted in flowers for the church at our wedding and we were hoping we'd be able to get the image in our head into the head of the woman from the shop. As we waited a couple of staff from the shop popped their head through the door and gave us updates on her pending arrival. As she came out carrying two wooden folding chairs and asked us if we'd like to meet in the park that was next door to the shop.

Finding a bit of shade, we sat down and chatted for a few seconds, getting to know each other, and then it was down to business. She is a quick thinker and she's done this before, so she easily caught what it was we were trying to do. She felt that it was possible and that she'd love to do it for us.

I was completely impressed at how she handled the disability factor in our business together. I could have gone into her shop but she respected my wish not to use the ramp that was there. No jolly hockey sticks 'you can do it' stuff at all. She said, as she carried the chairs out to the park, how glad she was to get out of the shop and thanked us both for the opportunity to be outside. I know that what she was doing was telling me that the adaptation she was making to meet with us was something that she, personally, welcomed in her day.

As we spoke she listened to both of us. Unlike maybe 70% or 75.273% of our initial interactions where, before I demand inclusion, I am physically there but conversationally eliminated, we started at equal and stayed there throughout. We all ended up parting on a cheery note. Probably more cheery if we'd been inside the store. I think the weather played a bit of a part in that, but I think that intentional welcome is what made it such a good experience.

Intentional welcome.

Now there's a business strategy I'd like to see more often. You?

Sunday, May 17, 2015

The Accessi-glance

Photo description: Young man in wheelchair glancing over his left shoulder.
Joe was in paying the florist so I headed across the street to pick up some beer at the Beer Store. After crossing the street I headed up towards the store. I noticed, as I was passing, a new Mexican restaurant had opened. I love Mexican food and have been looking for a really good Mexican restaurant for some time. When I realized what the restaurant was I did a quick glance back at the door to see if it was accessible.

As I did so one of the fellows eating in the restaurant, beside large open windows, said to me, "You're an expert in the accessi-glance, I see." I laughed at the term and stopped my chair. He told me that his husband had used a power wheelchair the last few years of his life and he too did the accessi-glance all the time, "He'd notice a place he wanted to go in and he'd take a quick look, it only takes a second to see if a place is accessible."

I told him I was sorry about his loss, I could see that talking about his husband was still a bit painful but I could also see that he was enjoying the memories. I agreed that it only takes the briefest of looks to know. "He called it the accessi-glance, and it's funny because even though he's gone now, I still do it myself. I always feel a bit guilty going places where he couldn't." I didn't know what to say, so I said instead, "Well, I thank you for the new term, I'm going to use 'accessi-glance' all the time, because I do it all the time."

"Do you think he'd be pissed at me for going places like this, that he couldn't get in?"

"Did he love you?"


"Then, no, I don't think he'd be angry, after all you still notice and you still remember."

"He was a remarkable man."

"So are you," I said, leaving him wrapped in memories.

Saturday, May 16, 2015

Being Bejewelled

Photo description: a purple bejewelled hearing aid worn in an ear with two piercings

I was watching television last night and saw an advertisement aimed at the senior crowd. It was for a 'discrete' brand of hearing aids and it was clearly demonstrated that, when worn, it was virtually invisible. Now the nice, pleasant face, honey voiced senior man who was pitching the product made it clear that this product would make voices more distinct and conversations easily heard. The benefits were clearly stated, hearing wise. But it seemed that the primary pitch was that no one will know, that the product hides the shame of using a hearing aid. It was all very subtle, but it was wild to watch how carefully they phrased everything. If the fellow could have whispered and been heard, he would have.

This stands in stark contrast to a teen girl I saw walking with friends wearing two brightly turquoise hearing aids. Her hair was cut short. They were plainly visible, more than that they called out to be seen. They, and she, were simply beautiful. Her choice of those hearing aids, I believe was not casual. The sheer brightness of the turquoise belied that assumption. They were there to be seen. They were worn with purpose. Purpose made fun, purpose made fashionable, purpose made turquoise - but there was purpose there.

The stark contrast of this young teen proudly displaying, even calling attention to, her disability gives me great hope that, maybe, a change is coming. Older people who are discovering they need assistance want to cloak and shield that need from view. It's as if they want to jump into the disability closet and hide away. They come from a time when shame was attached to disability.

And it still is.

But less so. People with disabilities who are growing up and into an era where disability pride has begun to raise awareness of the need to eschew shame and embrace difference are making very different choices. I wrote a long while back about seeing a handsome man on an airport shuttle wearing bright yellow and blue elbow crutches that just screamed for visibility. That was the first time I'd seen brightly coloured crutches. But ...

Photo Description: Four brightly coloured elbow crutches, green and blue, blue and yellow, black and green, black and brown.

... they come in many colours, fitting a variety of personalities and a myriad of outfits. They've become something that can be considered both a fashion accessory and a helpful aid for walking.

So, just from watching that commercial on a day I saw a young girl proudly wearing her hearing aids ... I have determined that shame is lifting and change is coming.

I hope I'm right.

Friday, May 15, 2015

His Words. Not Mine

Yesterday Joe and I ran into a fellow with an intellectual disability downtown. We hadn't seen him in in a few years. When we told him, in answer to his question, "What's new?" that we were getting married, we were given the warmest wishes and the most sincere congratulations. He's a cool guy, in truth I wondered how he would react to the announcement of our upcoming nuptials, and he became even cooler as he demonstrated that he approached us with no prejudice or judgement. I could see that Joe was really moved by what he had said and how he had said it.

He asked a few questions about the wedding, said he would try to be there, and as he turned to leave he said, "I can't get married until my mother dies, she won't let me have a girlfriend, she gets mad when I talk about it. I love my mother. I don't like the feeling, sometimes, that I'm waiting for her to die so I can be a man."

I didn't have a blog yesterday. I wrote the two paragraphs above yesterday, they were to be the introduction to a commentary on what happened, what was said. I couldn't find words to write what I wanted to write. I gave up. I'm back this morning. I still can't. I have decided that what he said needs to stand alone. It's his voice, I want heard here. Not mine.

Wednesday, May 13, 2015

What's Mine

Photo Caption: the word "MINE" in flaming capital letters
I often ride to work with people with disabilities who are going out shopping to large 24 hour stores. As I go to work so early, often being picked up just after 6 in the morning and arriving somewhere between 6:45 and 7:10, I was surprised that people would be up and shopping so early in the morning. One morning I watched as a woman, in her 60's, got of the bus and rode into the bright lights of an empty store. She looked very small and very alone.

The other morning I was on the bus with a youngish woman, maybe late 40's, who, in answer to my question about whether or not she was going to work, said, "No, no, I'm going shopping." By then we'd been chatting and I knew that she, like me, liked to chat. I decided to ask her why she went shopping so early. The question stopped the conversation and I felt that I'd crossed into 'none of your business' territory. I do this more often than I'd like to admit but I always pull back right away, and that's what I did, "If that's just none of my business, I get it," I said.

She said, "No, it's not that, it's just hard to talk about. I go shopping early, even though I hate early mornings and it's harder for me to go in the mornings, because it's safer. I finally got tired of going to stores and being the odd person out. The person that everyone needs to watch. The person that everyone feels sorry for. The person that strangers need to comment on, loudly. The person that people feel free to touch, to advise. The person that takes up too much space. The person who ..." she paused, "isn't welcome. I couldn't take it any more."

I said, "I know that's a lot of social violence and it's tiresome, and truth to tell, it hurts."

"Social violence," she exploded, "that's it, that's what it is."

"So, it's easier in the morning?"

"Yes, there are fewer people and their either tired or wired and pay little attention to me. I can wander about because no one is making me feel that I shouldn't be there, shouldn't take up space. I don't have as much fun shopping, because I'm tired too, but it's easier." She paused again, "I guess I just gave up."

"You didn't give up, you were forced out, don't blame yourself for what others did to you," I said, "I find that there are times I just don't go out. Sometimes for several days, besides going to work, I just come home and stay home. Sometimes I just can't face it. I don't think that's weakness, I think that's wisdom. Knowing how to take care of myself when I live in a hostile world."

She looked at me and said, "I never thought about it that way, I just thought I was weak." She started to cry a little. I said I was sorry but she brushed my apology away. "No," she said, "it's not my fault, I thought it was, I needed to hear that."

The bus arrived, she got out, at the bottom of the ramp she said, "Next time I'm going when I want to, it's time to take back what's mine."

Tuesday, May 12, 2015

The Unfairness of Chairs

Photo description: A collection of chairs, in black and white.
"You sit all the time Dave," said Sadie, looking at me with great seriousness. She's 5 years old now and is ready and willing to serve up her view of the world to those around her. I love this. She makes comments about what she notices about things and about people and she does it without prejudice or judgement. It's just factual. She tells us because she wants to make sure that we've noticed what she has seen.

"Yes, I do." I said. I didn't want to quibble with the fact that I can walk, unsteadily, a little bit.

"You sit in this chair," she said, pointing to the front room chair that I use, and then she pointed to other chairs, "and you sit in the wheelchair at your desk and you sit in the big wheelchair." The big wheelchair mentioned is my power chair.

"Yes, I sit in those chairs, but I sit in other chairs too."

"What other chairs?" she asked, seriously.

"I sit in my wheelchair at work, I sit on the car seat, which is kind of a chair, and I sit on an airplane seat, which is another kind of chair."

"Oh, that's a LOT of chairs."

"It is. But you sit in a lot of chairs too. Like your chair at the table at home and the chair in the front room and the chair at your desk in school and the school bus seat, which is a kind of chair, you sit in lots of chairs."

"Yeah! I do."

"You will spend your life walking from chair to chair. I spend mine riding from chair to chair."

(Long pause)

"That's not fair!" she said.

She's non-disabled, she's going to have to accept that fact sometime, might as well start young.

Monday, May 11, 2015

Benefit Lecture in Barrie June 11th

For those in the Southern Ontario area, I am doing a benefit lecture in Barrie, I'm attaching the flyer. All of those involved are donating their time in order to raise as much as we can. I'll be doing my lecture on communication ... which looks at power and its influence on both sides of the helping paradigm ... it's fast and fun and active ... please come if you can, hopefully you'll get something out of the day AND you'll be helping out someone at the same time.For more information take a look at the flyer ... hope to see some of you there!

Today's post follows:

Signs - A Win, Win, Win, Win, Win Opportunity

Picture description: Signs, a restaurant and bar, pictured from the front showing a ramp installed from the sidewalk and up three steps.

I have wanted to go to Signs restaurant for a very long time. Signs is a restaurant where all the wait staff are deaf. You are seated by a hearing host who introduces you to your server, shows you their 'cheat sheet' for signs and then lets you at it. When it first opened I expressed dismay at it not being accessible but I was assured by management that they too were distressed by the lack of accessibility and were working on it. True to their word, they installed a ramp. I was a bit uncomfortable with trying the ramp because it seemed steep to me, but I threw that aside as we planned, along with the girls and Mike, to take Marissa out for Mother's day brunch.

Mike helped me get up the ramp and into the restaurant, it was a victory over my own expectations of failure. I really didn't think I could do it. I was massively wrong. We took our seats and looked around. they had a full wall of the signed alphabet, which looked, amazing when seen as art. They had some larger pictures of people doing various signs, like the one for 'thank you.'

Photo description: Woman signing 'thank you.'

Our waitress was warm and charming and endlessly patient with the kids who decided they wanted to finger spell everything. They had both learned how to finger spell their first names before coming and then learned how to introduce themselves. They were very proud to show this skill off. After a short time the experience became a wonderful Mother's Day brunch. The food was amazing, AMAZING, and we ate ourselves silly. The atmosphere was one that other restaurants dream of ... absolute welcome. It is close to the warmest and friendliest restaurant I've had as a disabled diner, but beyond that, it wasn't just me who commented on this aspect of the restaurant. Everyone at my table mentioned it in one way or another. And let me say again, the food was great.

To get out, I back down the ramp, which looks quite dramatic I know but it's actually easier than coming up the ramp in regards to the sharp turn that needs to be made. We were out, the rain had stopped and Mike snapped another picture before we headed home.

Photo description: Ruby striking a happy pose in front of the ramp and the restaurant.
It was a great experience. I heartily recommend the restaurant for anyone who wants to:

1) have a really good meal
2) in a warm and friendly environment
3) while having fun learning a bit of sign language
4) supporting a restaurant that provides employment to deaf staff
5) in a place that worked to become fully accessible

It's a kind of win, win, win, win, win, situation. How often does that happen for the cost of a meal.

Sunday, May 10, 2015

Fierce Love

There is an agency I have visited, every now and then, over many years. They have a wall that honours people who have given, materially and financially, as one often sees in non-profit organisations. There is a spot on the wall, however, that is a permanent mark of gratitude to three women, who came together, and formed the agency many years ago. Women who fought for community before community was conceived. Women who's desire to have their children receive quality education and training in their home communities ran counter to the dictates of the time. The institution called but these women, their husbands and their families, did not answer.

It's like this everywhere I go. Organisations founded by women, who would not see their child taken from them.

I work in a movement founded by the love of mothers.

Not the gentle caring love that you see on commercials.

But fierce love.

Love that took action.

Love that would not be denied, would not be diverted and would not be shamed.

Love that, in the hands of women, built buildings, built services, built a future for their children.

Love that, in the minds of women, stared down doctors, stared down social workers, stared down anyone who would take a pen and write their child's name in the margins.

Love that, in the souls of women, created a new language about disability, about possibility and about hope.

Love that created a movement, a civil liberties movement, for the freedom of their children with disabilities.

Gentle loving mothers on commercials belie the fact that there is power in that love.

Power to transform.

From someone who works in a field established and created by women, mothers, who loved their children. I honour all those who are not named on walls, not honoured on plaques. I pledge to remember that you wanted your child treated with respect and with compassion. I pledge, in your honour, to try every day.

Saturday, May 09, 2015

Me, Me-ness and Forgetting

Photo Description: The words I am, in capital letters with the word enough superimposed on the letters. The letters in I AM are made up of other words regarding ethnicity, sexuality, disability and other positive aspects about being.

I forgot."

I wrote those words yesterday when referring to being a speaker at a conference, doing what I loved with people who liked an respected me. I wrote that because of that kind of welcoming inclusion, I forgot. In the comment section, here on the blog, and in a discussion on Facebook, some people thought that I meant that I'd forgotten I had a disability. Though subtle, a question came through about 'what's all this about disability pride when you long to forget you have a disability?' Now be clear, no one said this, but it's a good question, as I hadn't written clearly, and it deserves an answer.

I don't often forget my disability. When I'm engrossed with doing something or when I'm fully involved in interaction with someone, I don't think about it much, but that's not the same as forgetting. After all, I'm pretty much always in a wheelchair. I pretty much always need adaption to the environments that I'm in. I pretty much need help every day to do things others take for granted. My disability is there. It's real. It calls attention to itself in ways that can't be ignored or forgotten.

Too, I don't have a huge wish to forget my disability. My disability, now that I'm 8, nearly 9 years in, has become part of my identity and part of how I see myself as a person. It just is. It takes, true, but it also gives. I have a disability community, of which I am proud to be an active member. I have a new point of view that has enabled me to see the world in a very different way. I believe I am better at my job because I have a disability. I believe I write different lectures because I have a disability. I believe that some of the experiences I have had that are unique to having a disability have changed me in a deep and profound way.

When I wrote that I forgot. I didn't forget my disability. I meant that I was in a place where disability had a different meaning to those around me. It didn't mean that I was worth less. It didn't mean that I deserved the harsh light of uncompromising attention shone on my life, my weight, my relationship. It didn't give permission to be touched or talked to or interacted with differently. I was Dave in a chair, and that's it. So. I forgot that I lived in a world of prejudice and bias and bigotry. So, I forgot that people who don't know me, know my Dave-ness feel they have permission to touch me, speak to me and interact with me in ways different than those who walk.  So, I forgot that the moment I got out of the van, and went into town, I would be noticed, and stared at, and valued differently, and that people's faces would say the words that they congratulated themselves for holding back.


I forgot that I lived in an ableist world with ableist attitudes and with people who are inherently disphobic.

And it was nice.

You know, some people say to me that 'once people get to know you, they forget that you are disabled and interact with you in typical ways.' I find that disturbing. Firstly, I don't want them to forget that I have a disability, I do, I'm not ashamed of it, it's not a fact about me that needs forgetting. Secondly, why is it the burden of disabled people to go out and meet people so that they can have a transformitive experience and become more decent in relation to disability? Why can't disabled people, en masse, simply expect decency? I don't like the idea that, as a minority, we are so different from the norm that the norm has to have some kind of personal awakening to the personhood of someone with a disability. I don't like person first language because it panders to that idea. Let me tell you that I am a person first and that I have a disability second. I'm forced in language to place disability as secondary to personhood when, in life, I see it as equal to or no different from personhood. Disability doesn't have to come second when respect comes first.

I am a disabled dude.

I am a gay dude.

I am a fat dude.

I am all of those things. I don't think about them all the time, but it doesn't mean that I've forgotten them. It's just that, at some times, the situation doesn't call the identity to the fore. That's all. I am not ashamed of who I am.

I can be ashamed about what I do.

Some things that I've done deserve forgetting.

But me, and me me-ness, nah, I'm good with all that.

Friday, May 08, 2015

The Shift

Description: Two overlaping cricles with an arrow to the overlap with the message "Nothing fits here!"

Sometimes the shift is hard.

Yesterday I spoke at the OASIS conference and the day began by meeting with my co-presenters for breakfast and to go over our notes. Even though we were all a bit nervous because it was a new presentation, we were in good spirits and I had fun.


I forgot.

We went to get ourselves registered and wandered through hallways where I knew a lot of people. The morning was filled with warm greetings and the occasional short chat. At the registration table, we got what we needed and we headed back, towards the presentation room. Again warm 'hellos' and a feeling of welcome.


I forgot.

Then at presentation time, we went in got set up, were introduced, then started. It went better than we all expected. We moved back and forth seamlessly. The fact that we like and respect each other I think came across during the presentation. So, in the end, it was fun to do. The feedback was good.


I forgot.

Afterwards Joe and I and the presentation team joined people from Vita for lunch and we laughed and chatted with each other. It was really fun to be with people you work with simply having lunch together and having nothing on the agenda to achieve - other than to be together. They say these moments build relationships, I think they are just nice and don't want to think of them with any purpose at all. Food was good, company was better.


I forgot.

We got home and decided to go up to the Bay to check out to see if they had flower girl dresses there. We want dresses that are fun, are cool, and can be worn again. I hit the street.

And remembered.

And was reminded again and again.

That I am different.

That I am disabled.

That I am worth less.

Slammed into my face.

They don't know, like I do, that welcome is possible.

I should never forget, ever, that difference and disability is a canvas upon which people draw their own conclusions.

Thursday, May 07, 2015


I'm up way early. Have been up for a long time. I'm doing a new presentation, one I've never done before, with a team of presenters, it's a first for all of us. We've met once. We'll meet again this morning. Then, we're on.

So a combination of nerves and catastrophic thinking got me out of bed.

Isn't there going to be a time when I can approach this stuff with confidence? Yikes. Joe says that if I'm going to push myself to grow and develop and present new information - then nerves go with the territory. Right supportive is my Joe.

I know he's right.

Which makes it worse somehow.

So, my mindset isn't into writing a blog right now, I'm gonna go back to bed to see if I can squeeze in two more hours and then get up and have a fun presentation. I'm sure it will go well. (That's what I tell myself, leave it alone.)




Wednesday, May 06, 2015

The Letter

Yesterday I received a letter informing about a film/book/project that they sender hoped I'd be interested in and as a result of that interest write about it. I get these all the time and, if you are a regular reader, you know that I only seldomly use this space to push any kind of product. I have done. I may do again, but I have to be really struck by the material.

I didn't even get to the material.

I couldn't get by the letter.

In it, when speaking about the primary person involved, it is said, "He doesn't see himself as disabled.

Think about that for a second, a letter is written to a disabled writer telling him about a fellow who, also a wheelchair user, doesn't seem himself as disabled. Oh, so, this guy doesn't want to identify with people like me, disabled people. This guy wants to make it clear that 'I'm not one of those'. Well. I am. This kind of statement from disabled people is lauded. It's seen as plucky and resilient but what it is is another subtle way of indicating that the disabled status is something that people, this person in particular, does not want to embrace. It indicates that whatever has been done or achieved has been done for the eyes and hearts of non-disabled viewers, 'I will denigrate the status of having a disability, even though it is clear that I have one, because that INSPIRES you non-disabled people.' That statement says that whatever has been made, or written by this person will act to reinforce prejudice rather than challenge it. No need to re-think disability - it's so awful that even disabled people won't admit to it.

Later in the letter the term 'differently abled' is used. Let's be clear. I am not differently abled, I do not have special needs, I don't have a diversability. In fact, let's be clearer. "Barf!" Again these terms, terms to make disability, which is a real thing, into a euphemism. I DON'T NEED EUPHEMISMS!! I am disabled. Get over it. The use of euphemisms when it comes to disability is a way of saying 'what you have, what you are, is so freaking horrible that it can't be plainly spoken.' I am a disabled man, who is part of the disability community, who has a point of view and life experiences that are rich and add to the human narrative. Do eradicate my voice by making me into a euphemism.

Finally it said that he met people who 'defy being defined by their disability.' Oh, freaking, rah. Nobody is defined by any one characteristic about themselves. I am not defined by being gay and I am not defined by being engaged, and I am not defined by being disabled. But that's not what the statement means is it. It means something darker. It means that people with disabilities should not allow their disability any meaning whatsoever. Well, dears, my disability has meaning. It reveals a different side to my character, that I didn't know was there, and it has changed, for the better, my understanding of my self in relationship to the world, my self in relationship to others, my self in relationship to itself. Disability matters, it matters in a wide variety of ways.

I raised these concerns to the person who wrote the letter and received a very respectful letter back and an opportunity to take some of these issues up with the person involved. I don't know if I'll hear back. I informed the letter sender that I was going to write about this on the blog but assured her that I wouldn't identify either the fellow or the product being spoken about. I don't do attack blogs in that way. I'll go after things like this but not the people behind them.

I believe we are at a time where we need disabled leaders and role models and spokespersons who will stand loud and proud and address the world as a proud disabled person. In a time where Peter Singer can say that disabled babies should be killed as part of medical policy, we need different voices, speaking of disability in a new, a different way.

And to do that, you need to be who you are and wear it comfortably. Disability needs to be a word that you can say, without flinching, without embarrassment and without embroidery.


Try it.

I'm disabled.

Get over it.

Tuesday, May 05, 2015

A Poop-Tastic Blog

Photo description: Pillow with the words, in capital letters: LIVE LAUGH POOP

I was scraping some poo onto a stick and then smearing the fecal material onto a card, surrounded my the smell of my own waste, when I thought, "This is how my day starts?"


It's that time again.

Actually it's been that time for several months. I've had the poo stick test kit sitting in the bathroom for a really long time. I've had 4 calls about the test, encouraging me to get it done. I thought, "Someone out there is really, perversely, interested in my poo."


It's that time again.

It's actually been in the bathroom so long that when I tried to open the envelope that I put it in, the one I'm supposed to send it back in, I had to rip into it, I thought, "I wonder if it's entirely legal to send poo through the mail? Through rain, through snow, through sleet, through hail, I will deliver envelopes full of poo!"


It's that time again.

I pulled out the card upon which to smear poo and the stick with which to gather the poo in order to get ready for doing the dump from which I would mine the fecal material. When I looked at the card and the stick, they looked kind of sad to me. I thought, "Did the card want to be a greeting card, did it fail at greeting card school and get sent to the shit list? Did the stick want to be a Popsicle stick, did it do something wrong, is being a shit stick punishment visited upon sticks from an uncompromising stick god?"


It's that time again.

I almost didn't do it. I almost put it all back. But I didn't want to disappoint the chirpy, happy voice of the woman who calls to find out if my poo has been mailed in. I didn't want to make another empty promise. I thought that would be a shitty thing to do to someone. So I sat down to make my own rare and apparently, highly collectible, stool sample. I got up, looked at it and thought, "Not a bad effort, I can comfortably say that I'd made one that was perfectly good for sending off to the lab."


It's that time again.

I've got two more to do and I'm done! I thought, "What will I do with my time now that I'm no longer farming poo?"

Monday, May 04, 2015

In Lieu of ...

I feel a little uncomfortable doing this but I've been prompted by a number questions and emails. Joe and I, as many know, are getting married on the 6th of June. A number of facebook friends and blog readers have said they'd like to send a gift or a card or do something. We don't need another toaster - we've had 46 years of toasters - so we're good for stuff. But if you want to do something we are asking people to make a donation to one of two charities. Here's the information: In Lieu of Gifts we ask for donations  to be made to

Metropolitan Community Church of Toronto (which was one of the leading forces in Canada in the fight for the right for gay marriage)

After you click here then go to ‘celebration’ and type in “Dave and Joe’s Wedding”

 or to

Vita Community Living Services (to forward the cause of self advocacy)

After you click here fill in the comment section “Dave and Joe’s Wedding”

Please do not see this as anything other than a response to those who have asked.

Today's post follows.

The Gift

Photo Description: two hands holding out a gift wrapped in a red bow.

I've ridden on the bus with him for nearly 5 years. I am always on the bus first, I've gotten to know some of his staff, saying hello to them as they bring him on the bus. The first time he got on I spoke to him saying only 'Good morning.' His staff, just trying to be helpful, said, "He doesn't speak." I said, also trying to be helpful, "That doesn't mean I shouldn't say 'Good morning."

I've since learned his name and I have continued to greet him when he gets on the bus, always saying 'Good morning,' followed by his first name. After about a year he started to turn to me when I spoke to him. He'd look at me for a bit then look away. I figured that was a 'Good morning' back and I was happy with it.

One day a couple years in, the driver accidentally dropped a clamp and it echoed in the bus. He almost leapt out of his chair and he looked to the driver with absolute fear. Terror claimed his body and he was curled up in his chair, crying, his face buried between arms that looked as if they were trying to protect him from what ever danger, what ever hurt, he was expecting to come his way.


So many people with disabilities live with trauma.

I don't know what happened to him, I only know that something did.

The driver that day looked as shaken up as I was. He felt dreadful that the falling clamp had caused such a violent withdrawal. The rest of the ride brought an end to tears and he only unfolded when the staff on the other end calmly reassured him that he would be OK. That no one was going to hurt him. I prayed that that was true.

This morning, I was given a gift.

He got on the bus and I greeted him as normal. He didn't look at me. Which was odd, that's his normal response.

Instead, he said, "Hi."

His voice was ragged and rusty from lack of use.

But it was, "Hi."

It took almost 5 years of saying good morning for him to feel safe to let me hear his most precious resource.

His voice.

Sunday, May 03, 2015

The Blog That Joe Should Have Written

Photo description: A drawing of a smiling face wearing a nurses hat.
I tried to convince Joe to write this blog post. He was steamed enough that I thought he might just do it, but, in the end, Joe is not a blogger. It's too bad too because anyone who's received one of Joe's emails when he's in a whimsical mood knows that he is a really good and really funny writer. But, he said no.

We were in the Calgary airport waiting for our flight. We had a bit of time so I spent it wandering around the various shops looking at stuff and generally having a nice time of it. I'd made friends with my manual chair again and was enjoying the physicality of pushing myself around. I typically use my power chair at home and have travelled a lot recently with it in a rented adapted van, so I hadn't used my manual for anything other than around the home or around the room travel.

I'd finished looking around and went to join Joe who was sitting, alone, at the end of a long bank of chairs. I put my brakes on and he said, "You won't believe what happened," he then thought better of it and said, "yeah, you will."

I was curious now and asked him what was up, I could tell he was steamed.

"I was walking by one of the booths in the middle of the hallway and one of the women called me over. She asked if I was with the man in the wheelchair pushing himself around. I told her that I was. She then asked me how you ended up in the wheelchair, what your diagnosis was." I could see as he told the story that he was getting angry again in the telling. "I told her that was private information and none of her business. She started to say something but I walked away from her. Can you imagine that, she asked me, about you and expected that I'd tell her. A collusion of two non-disabled people discussing a disabled person. I was supposed to be part of that!"

This is the first time something like this has happened to Joe. It happens to me fairly regularly, people feeling they have the right to information about my health and my disability and getting offended when I don't answer their questions. The auto-superiority of the privileged to privileged information is astonishing.

I remembered the time (Susan, Belinda do you remember?) when we were having tea with friends and a woman asked me about my diagnosis and I told her that was private information, she responded with, "It's OK, I'm a nurse." From that moment that phrase or variants of it have become part of the Dave and Joe lexicon. We are aware, of course, that most nurses are wonderful, compassionate people with a great set of boundaries, but that experience was one that really stuck with us, so, it became part of how we express ourselves.

I said to Joe, "Well ... maybe ..."

He finished, "... she's a nurse! Of course!"

People must have wondered what we found so funny.

A sense of humour folks, a sense of humour. If you are going to make it having a disability or loving someone who does, a sense of humour is necessary.

Take that as fact.

We heard it from a nurse!